tag:blogger.com,1999:blog-61052737621083169712024-03-12T23:43:03.415-04:00Mommy and Daddy's Journey with our Son's LeukemiaTina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.comBlogger59125tag:blogger.com,1999:blog-6105273762108316971.post-14536880576123554352019-09-02T09:55:00.003-04:002019-09-02T10:42:35.410-04:00The Culmination of Learning in Wilderness Seasons<div dir="ltr" style="text-align: left;" trbidi="on">
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<span lang="EN-US"> This blog has been left open without an ending until I could share openly with the revelations of my life’s journey thus far. Today, I resolve to end this blog dedicated to my three children with the revelations and experiences I have learned along the way since I became a believer in Jesus Christ as a little girl. </span></div>
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Dedication:</div>
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<span lang="EN-US"><br /></span></div>
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<span lang="EN-US"><span style="font-style: italic;">I dedicate the entirety of this blog to my three children who have shown me how to love the moments and rejoice in all things. Thank you to my Heavenly Father for your relentless mercy and grace. Thank you for sending me your son Jesus as your greatest expression of mercy over my life and my children. I am proud of each of my children for the God-designed characteristics, compassion and kindness that each of my children exhibit. Gabriel has walked this planet with a story of adversity, but shined joy throughout all medical trauma he experienced. I have seen the power of God’s hands over His life. Simone is compassionate, empathic and kind that she would reach out to the hurting to say "I care and you are not alone." Yasmine brings humour, excitement, kindness and compassion woven together that shines the sun on any occasion. Each of my children have been uniquely woven together, but have a story of a life once led that brought pain, sadness, and fear. However, this cancer story brought us together as a family of intimacy and strength. I pray that my children grow to know they </span></span><span style="font-style: italic;">are “fearfully and wonderfully made.” </span><span style="font-style: italic;"> </span><span style="font-style: italic;">I pray that each of my children grow to honour, glorify and seek Holiness and Righteousness above all in this world. I pray they know they are each valued, significant, and worthy because of who God says they are and not this world. My three children are a gift beyond measure. </span></div>
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<i>Life... The Battles and the Lessons</i></div>
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<span lang="EN-US"><br /></span></div>
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It has been said in various blogs, movies, and social media posts that “God never gives us more than we can handle.” This statement from well- intentioned people is not in the bible. Furthermore, I would have disputed this statement during some of my most difficult seasons as a child when I was physically and verbally bullied, moving out at 16 years-old and going on welfare to complete high school, attempted suicide, self-injured, abusive first marriage, seeking love in the wrong place with a female, hardships in my second marriage, miscarriage, and helplessly watching painful treatments and fearing the loss of my son’s life as he battled cancer. 1 Corinthians 10:13 is a scripture that is often referenced to “God not giving us more than we can handle.” This scripture is often misinterpreted. Paul was writing to the Corinthians and was speaking to sinful temptations, and not difficult seasons. The scripture states, “He will not allow us to be tempted beyond your ability, but will always provide a way out.” We are all at risk of being tempted to sin as 1 Corinthians 10: 14 (amplified) tells us to “run from idolatry (anything that includes loving anything more than God, or participating in anything that leads to sin and enslaves our soul). However, there are seasons in our life that occur without connection to sin, which we see that through the example of Job’s life. My life exempflies the intermingling of both difficult seasons and choices I should never have made. As a believer in Jesus Christ we can understand that the enemy is prowling about tempting us to willfully sin even in wilderness seasons that are meant to refine and draw us closer to truth of the Word of God.</div>
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<span lang="EN-US">I wrote many journal entries over the course of my life, but one particular journal at 20 years old stated that “I believed God only placed me on this earth to test how much one could endure.” I <i>believed </i>God forsook me as I wandered the streets alone at night escaping the abuse in my first marriage and crying out in despair for God to rescue me. I never stopped praying or battling my life without God, but I can certainly see that I made choices that were sinful in amongst the betrayals, abuse and suffering. My life was complicated with confusion as most of my suffering in early life occurred within the church and Christian experiences, which Satan twisted and deceived my young mind easily as I was devoid of experiencing loving, holy and righteous influences during that time in my life. Yet, I knew in my spirit I felt conflicted, and continued to seek biblical truth. One night when I spent the night at my parents the Holy Spirit took me to Romans 7: 14-25 as I was on my knees praying for an understanding of my circumstances. God’s mercy came down upon me to validate my pain rather than condemn. He graciously wrapped me up in His arms to remind me of another way. Paul wrote: “I don’t really understand myself, for I want to do what is right, but I don’t do it. Instead, I do what I hate. But if I know that what I am doing is wrong, this shows that I agree that the law is good. So I am not the one doing wrong; it is sin living in me that does it.” The Lord’s mercy continued when He sent an angel to comfort me one night as I sat alone in Owen Sound on a park bench at 2 a.m. I sat alone in an open area where no person could be concealed. I was crying in desperation for this life to be different, but could not see a way out as I was entrenched with suffering in all directions from my family, church, husband (now ex-husband) and loss of friendships. I looked up to see an older lady who reached to comfort me. This comfort felt foreign as she provided something that was indescribable. It was as though I felt the touch of God’s love in a moment. During that time I was living a life filled with shame, but the Lord knew I needed His revelation of grace and mercy. This small moment was God’s tangible touch of mercy and grace for me as I recalled how quickly this person (angel) came and left. I was left with wonderment, as there was no spot for this person to hide. I believed it was an angel, but Satan was really great at creating doubt when I was younger. God graciously confirmed that it was an angel in 2018 (a story for another time). <o:p></o:p></span></div>
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<span lang="EN-US">I sat on that bench desperately crying out to God to be rescued from my life. I did not have a story of drugs, alcohol or parties, but I chose to chase after the acceptance and approval of people even if they hurt me. There came a time in my life after the end of my first marriage that I built walls, kept people out and was able to walk away from people that I felt would hurt me. I realized this was not a great long-term strategy, but this seemed like the best adaptive response.<o:p></o:p></span></div>
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<span lang="EN-US">I grew up attending church my entire life. I have a praying mother and father. I had a praying grandfather and grandmother. I had people coming to my residence each night praying over my apartment as I looked out my window. Many were praying for me. I understood trials; tribulations and living a persecuted life were attributes of following Jesus. I had already experienced bullying in elementary school and called stereotypical names “Jesus Freak” or “Bible Thumper” in High School. I knew I loved Jesus. I knew He would always be a part of my life. It was a choice I made at 12-years-old at a Christian camp. <o:p></o:p></span></div>
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<span lang="EN-US">My wilderness season continued in one of the greatest and traumatic experiences of my life. It was when I was blindsided with the words “your son has cancer.” I had been through enough pain (so I thought) that I could not understand why this journey was added to my life. During this season I went to study the book of Job, but the pain I felt and anger toward God became overwhelming. I battled with God. I felt things I could never have conceived feeling as I experienced the fear of my son dying. Yes, I was angry, sad and scared. I was in a fight for my spiritual life and saving the life of my son. It was the greatest spiritual test and battle of my life. In the years throughout I could not understand what was before me. The first diagnosis with my son left me feeling more anger and fear directed to God. It was during my son’s relapse in his Central Nervous System, Transplant, and Pneumonia without an immune system, and Graft versus Host Disease (GVHD) that had me on my knees. I turned to God in intimacy and relationship that brought me to a place of the revelation of who “He says He is.” I wanted an intimate relationship with the one who is my creator and the lover of my soul. My previous years leading up to this season of pain I did not have the revelation of Christ Jesus. I knew in my head about Jesus, but not in my heart. I needed a deep revelation of the Father’s love through His greatest plan of restoration. He sent His only son to die for me. I did not realize that the culmination of my life experiences would bring me to a place I had to make the ultimate choice. Will I follow Jesus Christ with all that I am even if it cost me everything even approval of humankind? Would I stop chasing the acceptance and approval of others to fix my historical pain as a child, youth and young adult? I believe this is a choice we will all face, but may surface in differet ways depending on our historical suffering.<o:p></o:p></span></div>
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<span lang="EN-US"><b>I slowly began to understand the call upon every believer: </b><o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He wants to be praised, glorified and honoured, as He is worthy to be our all.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He wanted/wants me (us) to surrender to Him throughout all adversity. <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">Praise Him even when it is hard and praise Him when it is good.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">Experience pain (sadness, anger, grief, etc.) with Him in relationship </span><span style="font-size: 12pt; text-indent: -18pt;">rather than outside of a relationship with God. </span><span style="font-size: 12pt; text-indent: -18pt;"> </span><span style="font-size: 12pt; text-indent: -18pt;">Relationships with people can bring comfort and support, but only God can restore circumstances that may not be, as we desire.</span><span style="font-size: 12pt; text-indent: -18pt;"> People are not meant to be a replacement of Him, but with the right support can be an extension of His love and truth.</span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He is our redeemer and restores all things. He brings comfort, peace and joy beyond all understanding.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He wanted/wants me (us) to surrender all that He designed in me (us) to serve Him. It was never for me. It is and always will be for the Kingdom of God.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He wanted/wants me (us) to choose His acceptance and approval rather than others. I learned that chasing acceptance in people who were just as fallible as me would result in a “dead end street” and entangle me (us) with pain. <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He wanted/wants sanctification that grows fruits of the spirit.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US">He cares more about HOLINESS AND RIGHTEOUSNESS above all.<o:p></o:p></span></div>
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<span lang="EN-US">February 2009 and onwards has been a time of deep understanding of how my history had unfolded from personal choices to seasons of refinement.<span style="font-style: normal; font-weight: normal;"> </span>I welcome this refinement even though it is hard.<span style="font-style: normal; font-weight: normal;"> </span>God reveals all blind spots as the seasons’ come and go.<span style="font-style: normal; font-weight: normal;"> </span>We will all enter into multiple wilderness seasons to refine us into a Holy and Righteous people.<span style="font-style: normal; font-weight: normal;"> </span>It hurts, “But take heart as God has overcome the world (Romans 8:28).” <span style="font-style: normal; font-weight: normal;"> </span>The greatest journey I am walking is the healing of my soul to become more Christ-like.<span style="font-style: normal; font-weight: normal;"> </span>He is healing, repairing and providing revelations of who He is. Today, I am still traveling this journey as God continues to draw out what may be hidden, but I having a willing and teachable heart that is allowing God to permeate and change me. Hardships and trials still come, but with a heart that pursues that almighty God it is a different path compared to a past filled with pride. The refiners fire creates "rivers of living water" that flows for the Kingdom of God. It has always needed to begin with me and not others. I am still growing and learning as we all are until Jesus returns. </span></div>
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<span lang="EN-US"><i><b><br /></b></i></span></div>
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<i style="text-indent: 18pt;"><b>Today:</b></i></div>
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<i style="text-indent: 18pt;"><b><br /></b></i></div>
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<span lang="EN-US">I am honoured that God uses me to restore hope in others as someone who has believed as a young girl, teen and young adult that I was insignificant and had no value. I am honoured and blessed to walk hand-in-hand with those that need a tangible presence of the Lord within the Body of Christ and the world that does not know the face of Jesus. Today, the intimacy and living with the revelatory knowledge of the One True God is beyond comprehensible. It took have a willing heart, surrendering and seeking Him in all times. He has been recreating me. Telling me that He has always had a plan for me, but has been waiting for me to fully accept His divine plan over my life. I sit fully immersed in Him with curiosity as to what He will continue to show me that remains unresolved or growth He wants me to achieve in Him and through Him. I won’t tell you I enjoy trials or wilderness seasons, but I do have a different perspective as I now see what He is doing in me from a Kingdom of God lens. I always ask the Lord to show me what needs “to get out of me” that does not reflect Him and what is He teaching me. The sanctification journey is hard, but so worth it as God is glorified throughout this process. <o:p></o:p></span></div>
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<span lang="EN-US"><span lang="EN-US"><i><b>I pray if you are reading this today that you experience a great revelation of our Heavenly Father's plan for your life that is unique to you. He desires you completely to trust in Him with all of your life. He is for you. <u>Remember</u>, emotions are your human experience needed to be supported and validated. </b></i></span><i><b>These emotions are fleeting and can deceive your soul by making your mind believe thoughts that entrap you. </b></i><i style="text-indent: 18pt;"><b>God designed you with emotions, but to be expressed in relationship with Him and the right people who always lead you to Jesus. Walk it out with Him. Trust in Him who brings comfort and peace, but speaks only truth beyond the emotions. Choose God's truth. Allign your will to His. He loves you so much! </b></i></span></div>
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<span lang="EN-US">I pray you choose to WALK A SANCITIFICATION JOURNEY with the only one that can PERMANENTLY change you, SUSTAIN YOU, and give JOY and PEACE beyond all understanding. Sending you all so much love and prayers. Bless you as you walk this Life awaiting Jesus' return.</span></div>
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-36181549393326237642015-06-04T01:38:00.001-04:002015-06-04T14:29:03.870-04:00The Truth Within..<div dir="ltr" style="text-align: left;" trbidi="on">
In February of 2009, I began to write in my blog to keep people informed. It was consistently helpful as everyone remained aware of the most up-to-date information. My blog continued thereafter to decompress.<br />
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It was never intended on being a place of vulnerability for me. It became this place for me as it allowed me to safely express myself, and receive the support from everyone that encouraged my heart. It was never a place where I cared whether I was grammatically correct as I just wanted relief. I discovered it was a place I could release my burden of thoughts, and the surmounting emotions that made me feel like I was drowning. I remember feeling tired, emotionally overwhelmed, and it was the last thing I wanted to do was to rehearse the traumatic experiences of our childhood cancer journey to each individual person. My blog became the best approach to share the days of this heart wrenching journey through a parent's lens. I never imagined that my blog would have been a place for me to authentically share the pain I experienced each day as I journeyed with my son observing helplessly when he was subjected to pain, needles, transfusions, anaphylactic reaction, serious infections, relapse, radiation, and transplant. I have appreciated those who read my blog and supported our family with kind words and love. My time with my blog has decreased, but that has not meant our journey is over. It continues...just different now.</div>
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Today, I write to share another vulnerable story. However, it is a different story. It is a story of the aftermath. It has taken me this long to share this story as I wanted it to be a story of healing, and a voice to other parents to normalize their experience. I believe that in my career, we can only become better Psychotherapists when we do our own work. I want it to be a story that encourages people to get help, and seek someone to walk this journey with you whether it be family, friend or even professional help.</div>
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In 2013, when most of the traumatic events of our journey subsided I began to individually suffer. I was strong through it all (as much as one can be), but in 2013 I began to see symptoms in myself that became overwhelming. The only person who knew of my pain was my husband. I chose to be present for every traumatic experience alongside my son, and not because I was trying to be heroic. Unlike my character in so many ways. I was present because I love my son and I was never going to leave him to face this without his mommy. He is my baby. My child. I was so helpless. The only thing I could do was be present. This choice, unknown to me at the time, left me with trauma that inevitably surfaced. I knew that with my cognitive clinical brain I tried to assess myself without severity. I was scared, traumatized, and as I interacted with life I found that I only saw danger. My brain could not shut off, and was ready to "fight or flight." I saw my children hurt, and feared losing my children. Nightmares and flashbacks were present in my daily life. I began to seek means to cope by spending money. I wanted to escape, but could not find means to do so. </div>
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The guilt began to surface as I reminded myself that as a believer in Jesus Christ, I had the best form of healing that could be bestowed upon me. As a believer, I should not be suffering as God's grace is sufficient for me. However, I suffered. I suffered as life was quick to return to its normal state of all the details that make a family's life busy. I was not prepared for this return. I forgot about me. I forgot I needed to heal. I wrapped myself in the busy "normalcy of life," and lost myself. As I began to be busy I began to remove all that was nurturing, satisfying, joyful, and restorative. I believe these things managed my symptoms, but once they were eliminated completely my symptoms came with force. </div>
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One day, I was returning from a hike with my husband and our children. It was then I realized I needed help. I <span style="background-color: white;">saw <u>in my mind</u> a horrific scene where my children were hit </span>by a car as we were coming home. The world around me became a place that was unsafe. I startled easy and feared consistently. I went home. I cried. I could no longer keep this pain within me. I knew that months suffering with symptoms that were persistent and worsening were identified as Post Traumatic Stress Disorder. I did reach out for help to an amazing colleague who specialized in Eye Movement Desensitization and Reprocessing (EMDR). I worked through many details of my life, and the trauma of my son's cancer journey. It was incredibly difficult. Actually, that is an understatement. EMDR is hard, but it was the most rewarding process I have ever experienced. The healing and the resolution is unlike anything I can describe. My final session with my colleague ended with me having something left in the form of a physical sensation found in my stomach. My colleague asked me to "notice it." During the next set of what is called bilateral stimulation in EMDR, I realized that the physical sensation was fear. I feared the unknown future for my son, and this could not be changed in any form of therapy. I know the stats, and the research on post-treatment outcomes. My colleague asked me to notice this sensation, and the most amazing experience occurred. I saw Jesus taking this for me. He took my fear, and asked me to release this burden to Him. It was in that moment that I realized that as much as EMDR is using the brain's natural ability that God has intended it for to process/integrate there are many things that we must walk in faith. God's grace is sufficient for me. Jesus died on the cross for me, so that I don't have to carry this burden. As my traumatic images integrated in a healthy and adaptive process during my therapy it was the final step to healing where this fear was released to Jesus, and His grace. There are days that this fear surfaces as it is still very much a part of the outcome of a childhood cancer journey. However, I am instantly reminded to release this fear to the only one whom can carry such a heavy burden. I choose to walk in faith, so that I can have peace that surpasses all understanding. </div>
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This fear is a reminder of the vulnerable state of life, and of our children. I have learned much about suffering throughout my life, and those of my clients'. Life is hard. Life is dirty. Life is unfair. Life can really suck. But, life can be shaped by the lens that you choose to wear each day. The lens I choose to wear is being present and intentional in the beauty of my children's lives. I want to build a parent/child relationship that is secure, full of love, provides direction, boundaries, and is intentional and mindful. I see beauty through the eyes of my children. I see the flowers that paint our backyard, and hear the birds that my children try to mimic. I hear the sweet laughter of my girls as they prance around the backyard using their imagination. I see my son running, kicking, and smiling as big as the universe. He is able to play and has regained his lost childhood. He is my lovely young boy who has a story of pain and suffering from a relapsed cancer and a transplant. Except, he chooses to live life at its fullest, and to experience his childhood. He is full of joy and happiness. He has been given life, and not without its aftermath. Each of my children have battled their own trauma stories, and have all received EMDR therapy. My youngest struggles with anxiety and fear, but through EMDR it has decreased much of her struggles. We are still working, but her brain is still developing. My middle daughter worries about all those around her. She is a planner and very careful. She genuinely loves, is kind, and is full of as much integrity as a child can at the age of seven years old. Perhaps, observing her brother's suffering, she is trying to be the best child she can be. We encourage her to make mistakes, so she knows that "it is okay." We remind her that she is a child, and that mommy will worry about the worries when necessary. It is her job to make mistakes, and I will teach her. It is her job to be carefree, and it is my job to correct. We see her overly concerned thoughts about normal childhood experiences, and continue to teach and create a place to hear concerns. Gabriel's response is expressed by intellectualizing his journey to where he has not attached it to emotions. We continue to work with him to attach emotions and to connect to physical pain in his body. Very normal for children with medical trauma. It important for children with medical trauma to regain a control over their body again. We continue the journey of healing for our three children. We are thankful that our children received therapy as it created a significant change in each of their lives, and we continue to be observant and attentive to any challenges that may occur as their brain continues to develop.</div>
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As for our medical journey....Gabriel continues to attend hospital appointments every four months monitoring any post-treatment conditions that could occur through blood work. He has seen multiple specialist that cover a range of potential complications from chemotherapy and/or radiation. He is being monitored by an endocrinologist and his oncologist for growth and hormonal concerns. He continues with pulmonary and ECG's assessments to ensure his heart is healthy. Gabriel will continue for the rest of his life receiving check-ups to ensure that there are no post-treatment complications or secondary cancers. This is our family's journey. When you hear a family say they are done treatment...it does not mean they are done. A family never closes the childhood cancer door. It remains open forever. We just learn to adapt to this open door.</div>
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June 1 is a very special day each year for our family. Mike and I celebrate our son's and our family's childhood cancer journey. Three years ago on June 1st, my son received his life-saving bone marrow transplant. We now celebrate his re-birthday every year, and it has become our family's celebration. Each of my children are celebrated as they deserve to be as they shared this journey in their own special individual way. </div>
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Thank you for your listening ears, and your open heart. Please encourage anyone who may be hurting to get help. It is the best gift anyone could receive. Don't let anyone walk this journey alone. If you have a sense that someone is hurting...reach out. Social media has become a place where people meet up, share and express. At the root of social media is that everyone wants to be needed, wanted, cared for, and in-relationship. If not, why go on any forms of social media. Be present in the lives of those who may be hurting. </div>
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-30409868417150446962014-09-01T10:37:00.000-04:002014-09-01T10:37:52.321-04:00Happy 9th Birthday to my Hero on the 1st Day of Childhood Cancer Awareness Month<div dir="ltr" style="text-align: left;" trbidi="on">
Today, September 1st, is a wonderful day as I feel honoured and blessed to celebrate my son's life. My son has walked his nine young years with a smile and bliss in his footsteps. A life that has come with a fight unlike other children who do not fight cancer. He has battled cancer twice, received high risk chemotherapy, cranial and full body radiation, and underwent a bone marrow transplant. Yet, he continues to walk with a spirit of such inner beauty. I may be the biased mother, but I can truly say with such observation that Gabriel has walked with such inner beauty and his cancer journey has only increased his inner grace, empathy, and humbleness. He loves with words, affection and speaks of the adversities of this world with words of a wisdom beyond his years. He is a remarkable young boy. <br />
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Today, September 1st, is also the beginning of "National Childhood Cancer Awareness" month. The month that I will inundate social media sites with as much awareness of the outcome of paediatric cancer to children and their families. I made a decision almost one year ago to remove all contacts from my Facebook profile and to close my community page as it reminded me of the constancy that cancer had over my family's life. Nevertheless, I returned with a fresh perspective and wanting to continue connecting with people whether it was to simply to check in or to use social media as way to promote awareness. My son's diagnosis and relapse is a story not unlike other children who have fought or fighting cancer. Each child does have uniqueness to their story, but all families share the story of suffering, pain and watching their child fight a disease that receives only 4% of all cancer funding. There are also families that have a story of loss. The first day of school is tomorrow, and parents are excited about this return. The families that have experienced loss wish that they could see their child pick out their back pack, prepare clothes the night before, help pack lunch, and wish them a good night sleep. But, this will not occur for such families. A pain that will never leave. A constant reminder as every symbolic day comes that cannot be shared with the one that cancer took. <br />
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Finally, there are children experiencing negative outcomes caused by cancer treatment. A doctor may whisper the word "cured," but this often comes with hesitancy as the future often causes further concern. Parents know the statistics of treatment side effects and secondary cancers from radiation and chemotherapy. Parents observe their child as symptoms surface and question "Is this a side effect?" "Will it get worse?" "What does it mean?" "Who is the next specialist that my child will see?" Every bruise, bump, memory loss, pain, ache is a fear and a question. For example, my son has seen the following specialists: Nephrologist, Endocrinologist, Ophthalmologist, Urologist, and that has been only two years post transplant. Some people may even have to "google" the titles to determine their area of specialization. I would not feel embarrassed about googling such titles because it means you don't have these concerns. You should feel grateful and blessed when you look at your child[ren].<br />
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The journey looks different after treatment, and the more treatment you have the more future concerns arise. Currently, my son's story is determining whether he will have to proceed on hormonal injection therapy so he can grow and develop. More needles... because this is what a parent wants to keep doing to their child. He has seen the above specialists for symptoms that have surfaced that may be concerning, but our Oncologists wants to catch early. This is our story... We want our story to be different and the story for many other families to be different. "It is.. what it is." A common phrase amongst Oncology families. That does not mean we don't want change. We do not want to know all the areas of a medical system, but it is our reality and the reality of many families. <br />
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Most people argue that the cure rate for childhood cancer has become better compared to years prior. However, 25% of children will not survive and a significant percentage of children will have side effects and secondary cancers from treatment. (http://childhoodcancer.ca/education/facts_figures)<br />
<br />I write this blog to continue carrying the message of change. Today, is my son's birthday, but it is also the reminder of how much awareness is needed to end the pain of childhood cancer. We need more funding for research so we can understand why children are being diagnosed with cancer, better treatment and to cure cancers that cause mortality. We are not finished.... not until treatment outcomes are better and more importantly when mortality rates do not exist. <br />
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Check out the "8 brutal truths about childhood cancer" in the article below.<br />
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http://themourningafternatasha.wordpress.com/kids-and-cancer-8-brutal-truths-to-choke-on/<br />
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-61889196070757932282013-11-21T23:28:00.002-05:002013-11-21T23:38:49.256-05:00Fragility<div dir="ltr" style="text-align: left;" trbidi="on">
I look at the face of my children observing innocence and curiosity in all they do. However, my children's eyes also hide a journey of fragility. They have stories of loss, trauma, suffering, and fear. These experiences have brought questions beyond their years. I have seen the impact of this journey now that the hospital visits have become less. My children's vocabulary is medical language and fears of serious medical concerns aligned with normal childhood infections. I have observed anxiety and fear by questions or thoughts shared. As a result, my children have been attending counselling to help them heal from this medical trauma. How do we escape the pain of this journey? We carry this journey so close to the surface, that any trigger related to childhood infections, bruising, bodily pain expels a flood of emotions. Our family has been seeking restoration from this journey through involvement in sports, working, small getaways, and school. This involvement conceals a lot of trauma, but the reality of this journey it will always be apart of us. I believe it is a choice on how we make childhood cancer apart of our lives as a family and as individuals. We can choose to let this cancer journey rob our joy or we can aspire to do great things with what we learned about the deficits of paediatric cancer. I am coming to realize that as much as I want to continue raising awareness there is pain that will go alongside as I see other families suffer. The empathy created is unmeasurable. I want to reach out to each family to give them hope and offer a set of ears to listen to their pain. I want to advocate for change in a system that needs further research for better treatment outcomes for children. <br />
<br />
Recently, I changed our community Facebook page to "Smith Family's New Journey: Childhood Cancer Awareness," but the change came with hesitation. I want this journey to be over completely, and sometimes I want to run from everything to do with childhood cancer. I don't want to be reminded everyday of the "what ifs," and the reminders that statistically my son will have medical issues as he grows, and perhaps, secondary cancers. I want to help change the reality of childhood cancer for other families, as it is this feeling of fear, panic, and anxiety that I don't want children and parents to experience.<br />
<br />
Since our son's transplant, we have transitioned to roles of normalcy. We work, we play, our kids are in school, and we have been laughing a lot more. Our son continues to attend the hospital every six weeks for proactive care. The reminders of suffering resurfaces every time we step into the corridors of the hospital. Recently, I was reminded of how painful this journey has been when our son spiked a fever alongside a backache and a headache. I feared the worst. All symptoms would were very similar to a CNS relapse. The fever continued Saturday, Sunday, Monday, Tuesday, Wednesday, which we then rushed to the hospital. At this point, I was not sleeping. I was scared, crying, and wishing this journey never had to be ours. We have already been walking this journey for 4.5 years. I did not want the reminders that as long as I live I will forever have to worry about my son, and potential concerns for my daughters. Every trigger from the last four years resurfaced. I fought hard and prayed that this emotional pain would leave. How does one make this emotional pain leave without leaning upon the only one who can take it? It is walking in constant faith through prayer, and reading scripture that this emotion is bearable. Faith is not faith, unless you choose to trust God in the difficult times. It is easy to say you are walking in faith when you are not tested. It is during this greatest storm that faith is tested and built. I don't have the answers to this reoccurring journey and the fear that surfaces in the unexplainable. I do know without a doubt that God will be glorified in this journey. This life on earth will be unpredictable and never the same, and therefore, I cannot put trust in fleeting moments. I walk trusting that "Jesus is the same yesterday, today and forever (Hebrews 13:8)."<br />
<br />
The one attribute caused by this journey is the intense and unfathomable emotion. I have wanted to walk this journey being authentic about my emotion. This pain is the reality of our human experience. However, I have seen believers in Jesus walk a hidden emotional journey as it is the perception it does not represent someone walking a journey of faith. I do not believe that walking an authentic emotional and thought provoking journey is identified as lack of faith. As we look at the scriptures in the bible, we see Jesus clearly experiencing emotion. In the book of Isaiah it speaks of Jesus as "a man of sorrows, and acquainted with grief." It is recorded three times where Jesus was weeping in the New Testament. First, in John 11:35, states that "Jesus wept." It means to shed tears. Jesus tears were connected to the death of Lazarus. There are many thoughts as to why Jesus wept, and one view is that Christ wept out of sympathy for those whose hearts were broken. Is it not comforting to know that Jesus shares our feelings? Second, Jesus wept over his enemies when he contemplated what would happen to Jerusalem. He audibly wept (Luke 19:41). Third, Jesus wept for himself in the dark hours before the crucifixion (Hebrews 5:7). Jesus in his tears stated "My God, my God, why hast thou forsaken me?"<br />
<br />
My journey as a mom to a little boy fighting cancer has caused raw emotion from the fear observed and the fear of the unknown. There has been many unanswered questions posed to my heavenly Father. These questions will go unanswered, but it has never caused my walk to be swayed to an alternative path. God's hands have been over my son, and my life since I first began walking with Him. I don't understand why cancer, and then protection over my son's body during treatment when he did not contract swine flu from myself and he was neutropenic. I don't have the answer to why Gabriel fought pneumonia when he did not have an immune system awaiting engraftment of his unrelated donor's marrow. I have the same questions as many believers and unbelievers. Nevertheless, I pray and seek God to direct my path to show me His will. I continue to seek His face to gain strength and peace in the unknown future.<br />
<br />
The life we all live is fragile. We never know what tomorrow will have for each one of us. I keep a blog to write my authentic emotion and this fragility. Why would I want to remind myself of the fragility of life? It reminds me in this fragile state that God is the only way to walk with freedom. Freedom from fear. Freedom in worrying about the future. Freedom from suffering and pain of the past. He bears all things for us when we allow Him. He is my freedom from allowing this authentic emotion to fracture my faith. Thank you Jesus for taking our pain to the cross. You give us freedom so we can live to be a light for you as we help others that suffer. <br />
<br />
Heavenly Father, I pray...<br />
<br />
Be with the families that are hurting and suffering from loss.<br />
Be with the families that are fighting cancer alongside their children.<br />
Give them strength to wake each morning with renewed peace.<br />
I pray their hope is restored as they seek you heavenly father in the pain that they are suffering.<br />
You are strength in a life that is filled with moments of loneliness and pain.<br />
We don't understand why children must face cancer as it seem unfair, but I pray that those who get stuck in this question will continue to seek you. <br />
I pray this question does not cause them to seek alternative paths that move away from you heavenly Father. <br />
I pray that you continue to remind each person of your love and to continue knocking on their heart. Your gracefulness and patience is shown through you ability to never leave our side when we do so much to forsake you. <br />
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Thank you for your grace, love, patience, and dying on the cross for our sins. <br />
<br />
Amen<br />
<br />
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-89345732072629781912013-06-04T14:56:00.002-04:002013-06-04T14:56:26.846-04:001,572 days I Have lived and Breathed Cancer, but...<div dir="ltr" style="text-align: left;" trbidi="on">
I look at my son everyday as a brave and heroic little boy, who has journeyed for half his life to defeat cancer. This journey was long, this journey was traumatic, this journey will never be forgotten, and will always remain as a shadow upon our family. The question and/or comment from people "that we can put this behind us forever to be forgotten." I must share that I wish this to be true, but this journey will forever be apart of who we are. There are doors that remain open with potential risks from treatment. The headaches..."is this cancer?" The bruises on any of my children... "is this cancer?" Memory loss..."is this from cancer treatment?" Learning disabilities..."is this from cancer treatment?" Organ function/failure..."is this from cancer treatment or is it cancer?" These questions speak to just a few of the continued concerns. The questions...the fear... the unpredictable future...to bear this shadow for the rest of a parent's life for their children, without ever wearing this for your children to see. How does one carry such a burden, but to live fully.<br />
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Hillsong sings a song that speaks to how I live fully so I am not held in bondage to the questions, fear, and unpredictable future that cancer has caused in my family. Jesus will one day return, and this pain will never be present again as though it never happened. I surrender my fears, pain and heavy heart to the only one who can carry this burden without fail. He is the one that has provided me with peace when I felt like life here on earth was hopeless and dreadful. He brings me laughter and joy that envelopes me. I have seen God's hand move throughout my life as a child to an adult. He has never left my side. His beauty is expressed in this world in many forms. He provides this inspiration for me, even when I turn on the news to hear of others pain and hear of the stories my clients share. <br />
<br />
[Verse 1:]<br />
The skies lay low where You are<br />
On the earth You rest Your feet<br />
Yet the hands that cradle the stars<br />
Are the hands that bled for me<br />
[Chorus 1:]<br />
In a moment of glorious surrender<br />
You were broken for all the world to see<br />
Lifted out of the ashes<br />
I am found in the aftermath<br />
[Verse 2:]<br />
Freedom found in Your scars<br />
In Your grace my life redeemed<br />
For You chose to take the sinner's crown<br />
As You placed Your crown on me<br />
[Chorus 2:]<br />
In that moment of glorious surrender<br />
Was the moment You broke the chains in me<br />
Lifted out of the ashes<br />
I am found in the aftermath<br />
And in that moment You opened up the heavens<br />
To the broken the beggar and the thief<br />
Lifted out of the wreckage<br />
I find hope in the aftermath<br />
[Bridge:]<br />
And I know that You're with me<br />
Yes I know that You're with me here<br />
And I know Your love will light the way<br />
[Chorus 3:]<br />
Now all I have I count it all as loss<br />
But to know You and to carry the cross<br />
Knowing I'm found<br />
In the light of the aftermath<br />
I lift my hands to heaven to thank my Heavenly Father to be an enduring light upon my feet as my path was guided by Him. I lost sight on Him when I only saw what was in front of me, but when I closed my eyes to this trauma and looked to Him...I FOUND HOPE. My faith in Him, and not what I was presently walking was the only way I was equipped to be steadfast and strong. <br />
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I write this post 1, 572 days later, which is how many days it has been since my son was initially diagnosed with High Risk Leukemia with a MLL Rearrangement (markers with both AML and ALL). This is equal to exactly 4 years, 3 months, and 22 days. It is also how many days to his re-birthday. June 1, 2013, was the day we celebrated our son's re-birthday. It is the day he received his bone marrow transplant. It is the day we celebrate him for fighting a fight with love, positivity, and hope.<br />
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Thank you God for always being here to carry us through this journey. I continue to seek your face and pray for continued health in my son. I pray that one day he will share his testimony to encourage others and glorify you Heavenly Father. <br />
<br />
Happy 1st Re-birthday my wondrous and amazing son! 4 years, 3 months, and 22 days...fighting cancer... One year post-transplant... I am a proud mommy! I love you my son! I love my Girls! I love my husband! My family endures... <br />
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-42948972502911560862013-02-11T23:56:00.000-05:002013-02-11T23:59:44.201-05:00My husband...on our Son's Cancer Journey<div dir="ltr" style="text-align: left;" trbidi="on">
There has been many times I have wanted to express my thoughts about one person in my life who has seen me at my worse and my best during this journey. This person is my balance, my equal, my life, and the person who picks me up when I have felt despair. He is my soul mate. He is my husband.<br />
<br />
My husband is a man who is quiet and solemn. He is a man of great thought and wisdom. My husband is one that does not like attention, and there has been many moments that I have wanted to share much about my husband as I have posted my thoughts and emotions about this journey. However, I have hesitated until now as I know he likes his privacy. But, today, I want to honour my husband on this anniversary day of our son's diagnosis. <br />
<br />
Many people do not see my husband's true character. He is the funniest person I know. He makes me laugh at the most inopportune times. He is a father that goes beyond the call of duty. You will find my husband playing make believe, playing games, making crafts, telling stories, and just having child-like fun. He is also a father that cares and tries to listen to his children's thoughts and emotions. God has blessed me with my husband Michael.<br />
<br />
We have certainly had our ups and downs as all husband's and wives do, but as we have journeyed together we have become closer. There have been many moments when I have feared, cried, worried, and my husband came to encourage me. He has held me and let me cry. He allows me to be what I need to be in any given moment, but without letting me fall. My heavenly Father guides me, gives me faith and peace that surpasses all understanding, but there have been days where this journey has been difficult. My husband has been by my side during those days to encourage my heart.<br />
<br />
We have balanced each other during this journey as though we have practiced this dance. During days of difficulty for my husband it was my time of strength, and when I felt weak my husband was there for me. We have perfected this dance over the last four years, but sometimes we stumble when there is unknown territory. However, it will never change the fact that Michael is the person who I am forever glad to have my by side through all adversities. I am glad he has been by my side during our son's journey with cancer. He is and will forever be the most wonderful man, husband and father for our family. Thank you Jesus for this gift of marriage. You have brought us through much together and I pray we continue to trust and rely on you. Thank you to my husband for being my partner during this journey that has effected us physically, mentally, emotionally and spiritually. We can conquer everything together, as a family of five, and most importantly, with trusting God in all that we do.</div>
Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-8185402590490588142012-12-18T01:21:00.000-05:002012-12-18T01:24:40.744-05:00As Christmas Approaches...<div dir="ltr" style="text-align: left;" trbidi="on">
<b>As December 25th approaches I remember.</b>.. The very day I woke to find that the pregnancy test I bought on the 24th and tested only to find out was negative....was actually positive on Christmas day when I sensed that I should retry. I was overjoyed. My son...whom I love with all my being made his appearance on September 1st, 2005. <br />
<br />
<b>As December 25th approaches I remember...</b> We were advised one year ago at this time that our son had relapsed. I will forever remember the haunting knock on my office door while I was in session. I excused myself from my client to open the door to see the horror and tears in my husbands eyes. My husband told me "our son's cancer returned." We were three years into our journey, with only six months left. However, our fight was not done. Our son's prognosis for a cure decreased, and we were advised because he relapsed in his central nervous system that we had two choices (transplant or chemotherapy). As most know, we chose a bone marrow transplant as it is the most curable option. On June 1st, 2012, our son received his transplant one day before he was suppose to be done treatment completely as scheduled prior to relapsing. We look back almost one year ago celebrating Christmas up north secluded in a cabin to escape the journey that we knew was to come. Our Oncologist permitted this escape prior to commencing with high dose chemotherapy, and rounds of weekly lumbar punctures inserting chemo in his spine to defeat the cancer. <br />
<br />
<b>As December 25th approaches...</b> I look at my son almost one year later, and six months post-transplant with good days and bad days. Through all of these days he inspires me. He is courageous. He is caring. He is empathetic. I am blessed. He blesses my life. I want this journey to be finished for him. I want this journey to be finished for our family. As a cancer mom and a cancer dad, we carry the burden of worry about relapse, engraftment fail and future difficulties from radiation and chemotherapy. We watch discreetly as our son moves throughout the house. We watch for bruises. We wake each night to check for fevers. We are concerned of any pain, stomach aches, headaches, etc. without letting our son know. We are the cancer parent. We will forever be changed as this journey has changed us. This change has brought good aspects to us as parents. We cherish our children. We are patient with our children as we let the small things in this life roll off our backs. We soak up every moment of fun and silliness. We are a family that finds joy in each other even in our hospital room. This journey with cancer is not our leader. We are the leader of this journey. Our leader is joy, happiness, and to "lift Jesus high" through all this pain. I may cry, and question "why," but I will find joy through my Heavenly Father.<br />
<br />
<b>As December 25th approaches...</b> We still journey as our son struggles with Graft versus Host Disease (GVHD) in his gut, receives nursing every morning for two IV medications, and multiple oral medications to control GVHD and prevent infections as his immune system is suppressed, so GVHD does not spread further in his body. BUT, I am thankful. I am blessed. My son remains 100% his donor. My son will win his battle. As his mom, I will fight alongside him. I will always be by his side when he is sick, in pain, and I will be there as he struggles emotionally and mentally. I will strive hard for my son, and my daughters. One day my children will have a testimony of the greatness of God. <br />
<br />
<b>As December 25th approaches I celebrate...</b> The birth of Jesus Christ who
will one day come to change all this sorrow and pain. The one who
should be celebrated, thanked, honoured, and the one we should all
emulate. Michael W. Smith sings a song called "You be Lifted High." As this journey continues and one day ends....I want more than anything that as this song states that " it's you (Jesus) that they (community) see, not I." Happy Birthday Jesus. Thank you for my Salvation.<br />
<br />
<b>Finally, when Christmas day approaches...</b> Remember those in your community and around the world that struggle in various ways, that have less, and that have experienced loss. Perhaps, shine a little light on these people because we all want to feel loved, appreciated, and valued. Be thankful for what you have, and don't ponder about what you don't have. Choose to understand people not on what you see with your eyes because we all have a story. Perhaps, a story of pain and hardship. <br />
<br />
Merry Christmas, and I wish you all much love and blessings. <br />
<br />
The following words are from the song I shared above. <br />
<br />
<b>Be Lifted High by Michael W. Smith </b><br />
<br />
Sin and its ways grow old<br />
All of my heart turns to stone<br />
And I'm left with no strength to arise<br />
How You need to be lifted high<br />
<br />
Sin and its ways lead to pain<br />
Left here with hurt and with shame<br />
So no longer will I leave your side<br />
Jesus, you be lifted high<br />
<br />
You be lifted high<br />
You be lifted high<br />
You be lifted high in my life<br />
Oh God<br />
And I fall to my knees<br />
So it's you that they see<br />
Not I<br />
Jesus, you be lifted high<br />
<br />
And even now that I'm inside your hands<br />
Help me not to grow prideful again<br />
Don't let me forsake sacrifice<br />
Jesus you be lifted high<br />
<br />
And if I'm blessed with the riches of kings<br />
How could I ever think that it was me<br />
For you brought me from darkness to light<br />
Jesus, you be lifted high<br />
<br />
You be lifted high<br />
You be lifted high<br />
You be lifted high in my life<br />
Oh God<br />
And I fall to my knees<br />
So it's you that they see<br />
Not I<br />
Jesus, you'll be lifted high<br />
<br />
Oh Jesus, you be lifted high<br />
Oh you be lifted high<br />
Oh you be lifted high in my life<br />
Oh God<br />
And I fall to my knees<br />
So it's you that they see<br />
Not I<br />
Jesus, you be lifted high <br />
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Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-16482767831612653852012-10-16T16:33:00.003-04:002012-10-16T16:46:40.450-04:00How to Help<div dir="ltr" style="text-align: left;" trbidi="on">
I am sitting on my bed at the hospital watching my son sleep peacefully. A different story is observed when I walk by many rooms absent of parents on floor six. Little children sit alone as they fight a disease, whether it is cancer and/or serious infection. It breaks my heart when a child has to be alone without family and/or friends. They are alone in a room without support that give them strength in a world that is confusing and unknown. I want to go into each of these rooms to hold these children to tell them they are not alone, and they are loved. <em> Volunteers at the hospital are always needed to spend time with children.</em> <br />
<br />
I am thankful for the people that Mike and I have in our life that care for our children. My son has never been left alone. We fight alongside advocating for his rights, supporting him with love, and listening to his questions and sorrows. Even through all this we often suffer in silence so we can be strong for our children. I ask that we pray for all the children who do not have this support, but they find it in someone within these hospital walls. It only takes one person to make a connection, and to make a positive change forever in these children, who may not have this support at home. I pray for the parents that have lost so much, but find the one person they can lean on that eases their suffering.<br />
<br />
These hospital walls are covered with parental suffering. Perhaps, one of the possible reasons rooms on floor six are absent of a supportive figure is a result of the emotional pain being too great. A parent embodies all that a cancer journey entails physically, mentally, and emotionally. As I have been walking this journey for four years I have heard a common thread amongst parents. This commonality is the lost support of family and friends. It saddens me, that we, as cancer families, share a common thread of suffering of our children, but also that of lost friends and family. It hurts knowing that this journey causes loss at many levels. The other theme areas of discussion are medical care/treatment protocols, and our child[ren]. It helps to have families who share in the same pain, but there is also something important in maintaining connections with those that existed long before this journey.<br />
<br />
Most families are overly stressed, exhausted and in pain as they worry constantly about their child. We all know that fighting cancer is not like fighting an infection. It is not something you can say "I hope he/she gets better soon." Cancer means we worry about death. This concern never escapes a parent. Every decision is made cautiously, by both the medical staff and parent. One wrong decision can mean the life of your child. Yes, this sounds gloomy and dismal, but what is amazing is the very same parents are the most amazing parents who have come to cherish life. They make the best out of every moment. They love better, they laugh better, and empathize more than most. <br />
<br />
Most families are confused as to why friends leave. We know this journey is exhausting and overwhelming. The uncertainty on how to help the parents can be a daunting task. In addition, listening to the endless concerns and medical treatment can cause anyone to run. If I can offer all those reading this post from my time listening to the painful experiences by parents and through our own experience...don't communicate less often. If you have a friend or family member who needs support ask how you can help. If that parent does not respond. Small gestures to say I am thinking of you is all that they may need. Share your concerns about wanting to help, but uncertain how. Most importantly, j<em>ust hug us and listen to us. </em>All any parent wants when they are suffering is to have someone to listen without judgement and to have a shoulder to cry on. You don't need fancy words, advice or even to say anything. A simple..."I am here always to listen, to support you, and to give you a hug." If a journey is long for parents they may need continued support. Often parents comment that friends/family stay around for a while, but it seems the longer the journey the less frequent people maintain contact. This outcome is sad to us as most parents need support beyond these hospital walls. The part that I find difficult is that I cannot always given back because this journey is full of limitations. One day...I will! I have so many dreams about what I will do to give back. I cannot wait! <br />
<br />
Mike and I have appreciated that small sentiments during our journey that have encouraged our hearts. Thank you for the meals, the unexpected cards, messages on facebook, e-mails and phone calls from those that never gave up on us. Mike and I have lived a very limited life over these past four years because we had no choice. We had to and have to continue to protect Gabriel until he is no longer immuno compromised. <br />
<br />
There is so much to this journey with the medical care and treatment that we would never expect anyone to know all the details. I wish that this journey's completion date was once Gabriel engrafted, but we were advised there will be continued risks and concerns for at least one year post-transplant. Many continue to be shocked when a post is shared that Gabriel is admitted, as there was some thoughts that we were finished. We continue to move forward, but there will continue to be risks. BUT...this is a very big BUT...it does not mean that I have lost faith in my heavenly Father. I trust that God has His hands on my son. I believe that my son will have an amazing testimony to share when he is an adult. As a believer in Jesus Christ I am being taught patience. I would love if Gabriel could be at school, play soccer, and my girls could attend activities in the community. I would like to be able to attend social events without hospital admittances and infection risks, and work part-time helping others who are suffering. However, this is not my life at this time. I am being taught patience. I am being taught to trust my heavenly Father. Yes, it is hard to be patient. I am sad and frustrated only because I want this journey to be done. I continue to trust and have faith in God. Four years is a long time to have your life on hold. I must say I excell sometimes in this journey and sometimes I fail. <br />
<br />
<strong><u>Update:</u></strong><br />
<br />
Gabriel has been inpatient for almost two weeks for symptoms of vomitting and diarrhea. Diarrhea and vomitting that persists is always a concerning symptom, especially post-transplant. As a result, Gabriel had to undergo a scope to determine cause. The preliminary report shows ulcers that could be CMV in his colon and possible GVHD in his gut. The problem is that GVHD and CMV have opposing treatments. The concern at this time is how to treat without complicating one infection over the other. There are risks to treatment, so London is consulting Sick Kid specialists once pathology report is received. We are reluctant here in London about treatment, but feel better knowing Sick Kids will be authorizing treatment strategies.<br />
<br />
<u><strong>How you can Help</strong></u><br />
<br />
I wanted to create a list of helpful ideas as to how you can help those who have a family and/or friend whether it be a parent or a person fighting cancer. If you can add to this list...please add on facebook. I think so often people don't know how to help. Perhaps, a helpful list is a good start.<br />
<br />
1. Mail a card<br />
2. The hospital website allows for e-cards that are delivered to patients room<br />
3. Phone calls even to just leave a voice mail saying you are here whenever you need someone<br />
4. E-mail to encourage and to check-in<br />
5. Attend Clinic with parent or patient <br />
6. Meals<br />
7. Gift Cards<br />
8. Surprise family with a meal at the hospital<br />
9. Special gifts to say you are thinking of them.<br />
10. Call to go out for a coffee/tea<br />
11. Donate blood in honour of patient and/or set up a blood donor clinic in you town to honour patient fighting cancer.<br />
12. Leave a special note in their mailbox at home to encourage and show support<br />
13. Random jobs around their house<br />
14. Childcare and Petcare<br />
<br />
<br />
<br />
<br />
<br />
</div>
Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-89113150469292485922012-09-26T16:11:00.002-04:002012-09-26T16:11:49.401-04:00A Place we Call Serenity<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
I have not completed a post for over 1.5 months. I had started a post previously to this one while at RMH Toronto, but stopped writing. I decided to begin a new post, but to attach my previous thoughts to this current one as my thoughts all apply.<br />
<br />
I have wanted to
sit down to express my thoughts since my last post, but I have
struggled. I have not completed a post for the only reason that my blog
represents a continued emotional experience attached to this journey
that I just want to put behind me. There are days that I would like to
imagine that my family has not journeyed this path of pain with
cancer. There are days I wake trying to forget. This blog makes me
realize that there is much that I suppress about this long, aching and
painful journey. I scroll through my pictures on my computer of my
children, and most are shadowed with hospital treatment and/or our
limitations of what we could and could not do. The pictures represent
places we have visited with reminders on how we protected Gabriel from
exposure to infections, ensuring we were always close to an equipped
hospital and/or piggy-backed with treatment days. I cannot change this
factual information of our life, but I have chose to make it the best
life possible for my children. I am sure my children won't remember
these events as Mike and I do as that was what I wanted to achieve. I have certainly had many happy and joyous days that will forever remain in my memory. The happiness of these days does outbalance the shadow of treatment and cancer.<br />
<br />
There
are people that have expressed that we can soon put this behind us
never to be remembered. I think such expressions only come from those
who cannot empathize with a parent who has watched their child suffer as
they fight cancer. I won't ever forget this pain and what cancer did
to my family, but it will one day be a memory. A memory never to be
forgotten, but one that has allowed me to appreciate all the blessings
in this world. This journey has taught me to not take any event, menial
task, and normal parenting stresses for granted. I appreciate all that
life has brought me when it does not involve fearing my child's life.<br />
<br />
Recently,
I just read a post on another mom's Facebook page as she also travels a
difficult journey with her daughter. An individual posted that "she
was lucky as she would not have experienced many of the events, celebrities, etc,
if her daughter did not have to fight cancer. I was astonished and outraged for this mom. If you ask a
parent walking this journey about such choices... We would never want
any of these luxuries because such experiences are only because our
child fights cancer...fights to live....fights to survive. I would
rather choose anything opposite to this if it meant not having to fight
cancer and fear the life of my child. I am sorry to all those parents
who have received unsympathetic comments from people who do not
understand this journey. However, I have pondered many times the comments from people, and have been reminded that most people don't intentional cause pain. People only speak with wanting to provide an alternative perspective, even though difficult to hear. Especially, when received by someone who has not walked this journey.<br />
<br /> There are many times in my readings I am humbled by the spirit of others who have conquered a battle simply through the power of their mind. There are so many times when we observe in our environment pain, sadness and the depletion of this world. This world can cause us to question the intentions of humanity. This world increasingly causes one to foster thoughts of apathy. We are quick to judge and may even assume the worse in people around us. Our mind has an incredible power over perspectives of ourselves, our journey and the world around us. It certainly can be said that "Where our mind goes our life surely follows."<br />
<br />
God has stretched me and continues to build me in areas that I never conceived would occur during this journey. There are many times I have been frustrated, angry and sad because of the pain my family must walk. But, there is another path that God has been molding me to see and appreciate. This path is one of thankfulness and love no matter what circumstances I must confront. It is a hard path to continue following without hesitation, as there are moments when feeling blessed during this storm is hard to find. It is when I read or hear of other amazing examples of believers who have struggled and sometimes with more difficult stories than the journey that I must walk. Their stories amaze me because they turned a situation into one the glorified God through shining the light on His love and grace for all of us. This love in its truest form can only come from one place, which is our heavenly Father. He provides His Word to guide our path to confront the life we struggle with each day. This statement comes from a place of knowing as I once lived struggling. <br />
<br />
I recently finished reading a autobiography called "The Hiding Place," by Corrie Ten Boom. An amazing true story of a family proclaiming the Word of God during the holocaust. To see pain and destruction that is unfathomable, but meanwhile only to find blessings in a concentration camp. Corrie shares with her readers the life of her family as one that participated in hiding Jewish families underground, but sadly being invaded. She was shipped away along with her siblings and father to jail and concentration camps. Her life and her sister Betsy's life speaks to the power of God that only He can provide during one of this worlds most darkest times. Many would remark that anyone who suffered during the holocaust have the right to hate. However, these two women proclaimed Jesus Christ message of love. The sisters claimed that if the German soldiers were taught to hate they can be taught to love. They did so much to serve and risked their lives to the calling of Jesus Christ. During one evening upon entering a flee-infested barracks to sleep they were reminded of their reading from the New Testament in 1 Thessalonians that states ""Comfort the frightened, help the weak, be patient with everyone. See none of you repays evil for evil, but always seek to do good to one another and to all. Rejoice always, pray constantly, give thanks in all circumstances; for this is the will of God in Christ Jesus."<br />
<br />
The suffering I have experienced as a mother watching her child fight cancer has caused me to question many times. I am brought back to the very same answer to find peace within can only come from being thankful and trusting God. <br />
<br />
<br />
<u>An Update</u><br />
<br />
We are blessed to be home. We
returned home the end of August just before Gabriel's 100 days
post-transplant. We are so thankful that we were able to return home
sooner then we anticipated. Gabriel, Simone and Yasmine are very
excited and glad to be home. Mike and I are ecstatic to be home in our
place of serenity amongst our children. The past three weeks have
provided many opportunities for normalcy. We have loved family time
together over meals, bike rides in the park, walks, and playing some
sports. We have been loving routine and menial tasks because it makes
us feel normal. I have started homeschooling Simone and Gabriel as both
are not able to attend school until 2013. It is an interesting process
with an almost 3-year old, Junior Kindergarten and a grade 2. We
certainly have fun, but they keep me on my feet. I am so blessed to be
able to provide my children with this opportunity even though they
cannot attend school. I am blessed knowing I can home school in my home. To be home is a gift.<br />
<br />
Gabriel still attends the hospital once a week to monitor his engraftment and Graft versus Host disease (GVHD). His medication called Cyclosporin is slowly being tapered, and will be completely finished in two weeks as long as GVHD does not occur further. This med suppresses his immune system to prevent further complications from GVHD. The nurses comment that they take so much blood from Gabriel that they feel like they need to transfuse him once they are done. This blood work tests multiple infections that they want to catch prior to serious reactivation. Once Gabriel's medication has been completed we were advised that six months he can begin to be involved in the community without fear of infections. Gabriel's immune system is like an unborn baby, which makes him susceptible to all types of infections with limited means to fight. Nevertheless, our heavenly Father has protected Gabriel with am immune system that fought EBV (mono virus) without medical treatment. But, I contracted mono from Gabriel and was sick for about a week (tired, sore), but began to feel better about two weeks later. My spleen is still on the mend, which has resulted in no running. I have struggled with this change as exercise has been really helpful for me. In time, I will be able to run once again.<br />
<br />
Gabriel recently had a follow-up CT Scan at Sick Kids to confirm that all his lung infections have dissipated. We are thankful to say that his lungs were clear. However, the CT Scan found a compressed fracture in his spine, so we arrived home that night to have a phone conversation at 7 p.m.with our Oncologist from Toronto about this finding. We were feeling frustrated and sad once again as this was a bump in the road. After spending some time in prayer I realized that I need to be thankful for this discovery. Gabriel has no symptoms. Without God sending the right people and the right tests at the time Gabriel needed it, we would be facing a more serious outcome. Our son must attend a bone density clinic to determine any issues with his bones. The chemotherapy and steroids (mostly steroids) are the reason for the problems with bone density. We may have to consult with an orthopedic surgeon if there are further concerns, but at this stage we just have to attend a bone density clinic. Gabriel continues to feel no pain, except for when he decided to take up his new hobby of building projects out of wood. The hammer action caused some pain. Gabriel is not allowed to participate in sports at this time. I am sad for my son as he loves golf, soccer and baseball. We have spent a lot of time playing many of these sports as a family. Gabriel proves to have great strength as he takes everything in stride. He decided to find another activity to fill this void. His new tool set has provided some fun at this stage, but I imagine he will soon want to play sports again. <br />
<br />
Our daughter Simone has begun ballet once again. We had a long discussion about having Simone participate in ballet as she is exposed to children with possible infections. I have been feeling sad for my daughters, especially Simone as she is older. Yasmine is still young enough that outside community participation and friends are not a priority. Simone was only 13 months old when Gabriel was diagnosed. The limitations have been on her life too since the start of Gabriel's diagnosis. Prior to Gabriel's diagnosis I attended music groups, mother goose, play groups, gymnastics, etc. Simone's participation in these activities has been infrequent as means to protect Gabriel from infections. As a result, we decided that if parameters could be in place to protect Simone and myself from infections we would enroll Simone in ballet once again. The ballet studio is gracious and amazing to allow us to use an entrance that no other student/parent uses so that Simone is not waiting amongst all the children. In addition, I am able to wait in a room on my own without fearing infections from other parents. I know these measures are for only for a short period of time, so I focus on what is best for our family's life in the immediate. In the future, our family will be able to participate as all other families do. I am happy for Simone as she glows going to her class. She loves ballet. <br />
<br />
All three of my children will be starting school in September, 2013. Yasmine in Junior Kindergarten, Simone in Senior Kindergarten and Gabriel returns for grade 3. I never thought that all three of my children would start school at the same time. I can see staggering your children for school would be easier emotionally on a mom, so the first day of school for me will be quite difficult. I am experiencing conflicting emotions about this eventuality. Mostly, I know I will be overjoyed as this means that life is moving forward for our family. I will be okay! I will just go through a box of Kleenex and a lot of chocolate that day. BUT, for the first time ever these tears will represent normalcy, and not tears from what CANCER has done to my family. I look forward to these tears in September, 2013.<br />
<br />
Thank you for your support and your continue dedication in reading my posts. I will continue to post, but may not be as frequent as it depends on information that is happening for our family. I will continue to post until we can finally close the door. I also created a facebook community profile that is under my name to provide quick updates. <br />
<br />
</div>
Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-60843792804843931422012-08-02T23:40:00.000-04:002012-08-02T23:40:14.305-04:00I cannot have Peace…when I Fear<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="MsoNormal">
Another day has come and gone as I sit at my keyboards to
express authenticity of emotion and thought about this journey.<span style="mso-spacerun: yes;"> </span>I so often begin my posts with emotion and
pain, but this evening I want to begin with my blessings. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our children have blessed us with expressions of love during
times I have felt like crying.<span style="mso-spacerun: yes;"> </span>The
simplicity of either my son or daughters' hug as they wrap their little arms around my neck,
always makes me speechless and appreciative of the gift of children.<span style="mso-spacerun: yes;"> </span>The unexpected laughter from my children over menial
tasks and routines, that causes a ripple effect of laughter to all that are within a
short distance. <span style="mso-spacerun: yes;"> </span>Our life is described
as one of simplicity and isolation, but our children create a world of fantasy
that wraps us with love and admiration.<span style="mso-spacerun: yes;">
</span>To love life at its fullest is to observe and replicate that of a
child’s simple worldview when life becomes so complicated.<span style="mso-spacerun: yes;"> </span>Our children are the most important reminders
in this world of why we love, respect, empathize and strive to do good, seek peace and love.<span style="mso-spacerun: yes;"> </span>Most importantly, our children remind us of
our Heavenly Father’s love.<span style="mso-spacerun: yes;"> </span>If, we as
parents, can love our children as we do…how much more does our Heavenly Father
love us.<span style="mso-spacerun: yes;"> </span>This thought gives me chills.<span style="mso-spacerun: yes;"> </span>Our children bless us even in times of pain,
anger, sadness, frustration, and fear.<span style="mso-spacerun: yes;">
</span>Our children argue as any siblings do…our children test boundaries as
all children do, but I know that my priority as a parent is to teach, correct
and emulate Jesus Christ so that my children will grow to be healthy, caring
and honourable adults that will one day glorify God. I want to glorify God by instructing my children as God instructs me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are many days when my humanness leads to destructive thoughts, which proceeds to an emotion that controls. This emotion is fear. Fear has remained a constant battle over this journey, and one that I
have tried daily to not succumb to. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I must take a moment to share a destructive pattern that I fell into during this journey, and may be a common theme for others who have a child fighting a life threatening
illness.<span style="mso-spacerun: yes;"> </span>I fell into a trap, where I
needed to be strong at all times for everyone.<span style="mso-spacerun: yes;">
</span>When Gabriel was diagnosed in 2009, I decided that I would fight the
best fight I knew how.<span style="mso-spacerun: yes;"> </span>I would
characterize myself from 2009 to 2011 as robotic when it came to medical
care.<span style="mso-spacerun: yes;"> </span>As 2011 approached, I began
experiencing the compounding emotions suddenly as my body no longer was able to
hold on any longer. I stopped sleeping.<span style="mso-spacerun: yes;">
</span>I walked around anxious, and fearful.<span style="mso-spacerun: yes;">
</span>I have shared my emotions in all my blog posts, but the emotions did not feel as raw until
2011.<span style="mso-spacerun: yes;"> </span>I did cry and was angry, but
something happened in 2011.<span style="mso-spacerun: yes;"> </span>I began
experiencing all those emotions (anger, fear, sadness, frustration) at
once, and they felt more real then previously.<span style="mso-spacerun: yes;"> </span>I decided it was time for
counselling, as I could no longer cope.<span style="mso-spacerun: yes;">
</span>My first session I shared my story as though it was a book I just read
as I had so often in the past. <span style="mso-spacerun: yes;"> </span>The next
session, my counsellor began asking me the hard questions that I was never
prepared for and never said out loud.<span style="mso-spacerun: yes;">
</span>Not once did I ever voice this sentence to anyone…until that
session.<span style="mso-spacerun: yes;"> </span>My counsellor asked me what
scared me the most that was causing me to fear?<span style="mso-spacerun: yes;">
</span>I looked at her and could no longer hold back my tears.<span style="mso-spacerun: yes;"> </span>For the first time in an audible voice I stated,
“I am scared my son will die.”<span style="mso-spacerun: yes;"> </span>I cried
uncontrollable for a long time.<span style="mso-spacerun: yes;"> </span>She let
me cry.<span style="mso-spacerun: yes;"> </span>I needed to cry like that as I
held that pain in for so long, as I did not want the sense of losing
control.<span style="mso-spacerun: yes;"> </span>I learned something at a deeper
level that reinforced the clinical education I had received prior to my journey with
my son.<span style="mso-spacerun: yes;"> </span>We need to be real.<span style="mso-spacerun: yes;"> </span>We need to experience pain.<span style="mso-spacerun: yes;"> </span>We need to talk about the pain when it
happens.<span style="mso-spacerun: yes;"> </span>We are not out of control when
we do, but are strengthened even more when we allow ourselves to experience
emotions at its truest form.<span style="mso-spacerun: yes;"> </span>Today, I
take all my emotion to my Father in Heaven so that He can hear my pain.<span style="mso-spacerun: yes;"> </span>I cry…I get angry…I ask the whys…I seek Him
through reading and studying the Word of God.<span style="mso-spacerun: yes;">
</span>The bible guides my footsteps.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I want to touch a little further on this post about why fear is
so pronounced each day in this journey.<span style="mso-spacerun: yes;">
</span>We live in a world of statistics, and science.<span style="mso-spacerun: yes;"> </span>As parents, we read to determine the best
course of medical treatment. We meet with teams of doctors to trust that the
care they provide will protect and cure our child.<span style="mso-spacerun: yes;"> </span>We hear and observe what cancer does to
children.<span style="mso-spacerun: yes;"> </span>It is in our face.<span style="mso-spacerun: yes;"> </span>You have to ask yourself that when you see
the destructive nature of cancer and of treatment…”how do you not fear?’<span style="mso-spacerun: yes;"> </span>This journey encompasses sadness as the
reality that surrounds us. We observe the suffering of families who lose a child to either
cancer and/or treatment.<span style="mso-spacerun: yes;"> </span>We meet families whose child suffers further from organ damage as a result of the
treatment that was to cure them from cancer.<span style="mso-spacerun: yes;">
</span>A parent does not know the journey until it envelops you completely, and
you have to be prepared for the unpredictable.<span style="mso-spacerun: yes;">
</span>All at the same time being strong, peaceful, and caring for your other
children.<span style="mso-spacerun: yes;"> </span>No parent could ever be
prepared for this journey.<span style="mso-spacerun: yes;"> </span>We are not
prepared to watch our child suffer.<span style="mso-spacerun: yes;"> </span>Just
as I was not prepared to claim vocally that what I feared the most was losing
my son.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have learned many times over that fear causes me to lose
sight in God’s amazing hands upon my life.<span style="mso-spacerun: yes;">
</span>Fear robs me from everything that God has to offer.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I would
honestly state that this has been the most difficult test and difficult lesson
that I still struggle with today as I write this post.<span style="mso-spacerun: yes;"> </span>Basically, cancer + transplant +
unpredictability=fear.<span style="mso-spacerun: yes;"> </span>I fear because
of the unknown within the realm of cancer and a bone marrow transplant. When I
stay attuned to God’s Word my fear dissipates and peace enters.<span style="mso-spacerun: yes;"> </span>But, Satan quickly lures my thoughts during
this journey and there are times I am not prepared.<span style="mso-spacerun: yes;"> </span>I find myself on my knees once again asking
God to quicken my life unto Him.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know that victory cannot be won as long as I serve the
problem of letting my thoughts control me.<span style="mso-spacerun: yes;"> </span>Matthew 6:24-25 states: “Ye
cannot serve God and mammon.<span style="mso-spacerun: yes;"> </span>Therefore I
say unto you, take no thought for your life.”<span style="mso-spacerun: yes;">
</span>Immediately after that Jesus said, “No man can serve two masters,” He
said, “Take no thought.”<span style="mso-spacerun: yes;"> </span>I am learning
that I falter when I serve my thoughts.<span style="mso-spacerun: yes;">
</span>Isaiah 55 says for us to “forsake our thoughts, and by the Word, take
God’s thoughts.<span style="mso-spacerun: yes;"> </span>Furthermore, 2
Corinthians 10:5 says “ to cast down thoughts that challenge the Word and bring
into captivity every thought to the obedience of Christ.”<span style="mso-spacerun: yes;"> </span>My all-consuming thoughts that create fear do
not serve God hands upon my son and my family.<span style="mso-spacerun: yes;"> </span>Jesus is whom I want to serve.<span style="mso-spacerun: yes;"> </span>Not my thoughts.<span style="mso-spacerun: yes;"> </span>I need to continue walking in Faith in God’s
Word for myself, and my family.<span style="mso-spacerun: yes;"> </span>I pray
that this will be my path.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><u>An Update</u></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I want to keep updating my blog posts about my son, as I
know there are some who do not have a Facebook account.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Gabriel has been discharged repeated times to only be
admitted once again.<span style="mso-spacerun: yes;"> </span>Gabriel has been
fighting low oxygen levels, respiratory infections, and CMV reactivation.<span style="mso-spacerun: yes;"> </span>He is doing exceptionally well in spite of
the battles that continue on this journey.<span style="mso-spacerun: yes;">
</span>We are hearing him recite the phrase “I am bored” often.<span style="mso-spacerun: yes;"> </span>I would rather hear this phrase as it means
he would prefer to be doing something more exciting, and perhaps, has more
energy to do just that.<span style="mso-spacerun: yes;"> </span>Gabriel
continues on multiple medications both orally and IV.<span style="mso-spacerun: yes;"> </span>We hope as the middle of August approaches
that his medications will be reduced as we anticipate returning home in
September.<span style="mso-spacerun: yes;"> </span>Our outstanding concern is
that he has a reoccurring concern with low oxygen stats.<span style="mso-spacerun: yes;"> </span>A Respirologist has been referred to Gabriel
in hopes of assisting with these concerns.<span style="mso-spacerun: yes;">
</span>At this point, our primary doctor believes that radiation has caused
problems with his lungs.<span style="mso-spacerun: yes;"> </span>However, there
is no consensus as to what continues to lower Gabriel’s oxygen.<span style="mso-spacerun: yes;"> </span>We hope to have this medical issue
investigated further.<span style="mso-spacerun: yes;"> </span>He is not in any
increase safety risk, but his baseline has changed significantly when he is
sleeping.<span style="mso-spacerun: yes;"> </span>Gabriel has not had a fever
for over two weeks, and we are very thankful.<span style="mso-spacerun: yes;">
</span>We are thankful that Gabriel continues to move forward, and thank God
for his continued protection upon our son as this season continues.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><u>Please Pray for
the Following:</u></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">1. Pray the Gabriel will be well enough
to eliminate steroids<br />
from his medication regiment. (steroids increases his<br />
risk for infections...one in particular..CMV, but also<br />
controls Graft versus Host Disease).<br />
<br />
2. Pray that CMV reactivation no longer occurs.<br />
<br />
3. Pray that Gabriel will not see any further complication<br />
from his Graft versus Host Disease. He DOES NOT get Chronic GVHD, which can
occur now or anytime after 100 days post-transplant.<br />
<br />
4. Pray for healing over any respiratory conditions that the<br />
medical team is struggling with diagnosing.<br />
<br />
5. Pray that there will be no permanent damage from<br />
radiation and chemotherapy.<br />
<br />
6. Pray he will forever be healed from Cancer.</span></div>
</div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-21631251746651179262012-07-17T13:11:00.001-04:002012-07-17T13:12:02.878-04:00My Prayer...Heavenly Father,
I lift my voice and my eyes to you as I ponder the unexplained process of this journey. I am called to trust you with all my heart and all my soul. You have been teaching me patience as it is not my timing, but yours. My heart aches as each day continues to be lived in the moment. I pray that these moments can become a day, a week, a month, and a year knowing that my son and my family can gain back the time we have lost. I wish that my emotions would not impede upon this journey. The emotions that cause fear, anger, and frustration. Each time I am reminded to place my son in your hands. But, it seems hard as our life is a revolving door in hospitals. I am reminded again and again to trust you Jesus to take care of my son and to lay him on the alter. It seems I am not always obedient to keep my son remaining there. It is just hard when we have a dose of time together to then be placed back in the hospital for yet another concern. Oh Lord, when I walk these hallowed halls of this transplant ward to observe the families who are suffering. My heart hurts for them, and pray for your return. I want to go to each room to love and support them. To pray and tell them that through God, "He is here to give you peace". It is such a sad place Jesus for children and their parents. I pray for all the families who need rest in you.
I pray Jesus for the families who have to face the devastation of cancer once again after a transplant. I pray that your awareness of you can be known to these families. I believe you can move mountains when we have the faith to believe. The most difficult part of this journey is that we observe the suffering with our eyes and touch with our hands. It is living this suffering day and day out that causes me to be on my knees. I want to move to a time in my prayer life that I come to you with less of my family's suffering.
I do grow weary as this revolving door continues. I am constantly taking hold of fear that is triggered by hearing the stories of families facing cancer and serious GVHD 100 days post-transplant. I pray Jesus this is not our story. Satan is quick to remind me that when we thought we were on the road to recovery we were hit again with cancer, so be weary to trust that this journey is done. Jesus, I have come to know that there is a spiritual warfare happening in this journey. The first scripture I learned in Sunday School when I was only 10 years old was..."wherefore take unto you the whole armor of God that he may be able to withstand in the evil days and having done all to stand" (Ephesians 6:13). I never thought this scripture from when I was ten years old would be the one that encircles my thoughts. I know the Holy Spirit is telling me to be equipped in the Word of God. Trust in the Word as God is the bearer of truth. Satan is the one that tells lies and will do whatever he can to cause me to feel defeated. I pray Jesus for protection over my mind and to place people at the right time to encourage my faith. This journey is isolating and lonely at times. I am praying that those days where this journey feels isolating that you fill me and remind me that "you will never leave me or forsake me.".
Jesus, thank you for the blessings in this life you have given me. Thank you for my three beautiful children. Thank you that there is something in each day that allows me to smile. Thank you for protecting Gabriel from serious acute GVHD. Thank you for causing Gabriel's transplant to be expedited as so many people wait. Thank you that our unrelated donor was a 10/10 match. Thank you that Mike and I have remained infection free so we can care for our children. Thank you for bringing people into our lives to support and pray for us. More importantly, thank you for my salvation as one day I will come to live with you for eternity with no more suffering.
In Jesus precious name,
AmenTina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-4297559689427596852012-06-30T12:52:00.002-04:002012-06-30T13:07:26.251-04:00A Day in the Life of our Family Post-TransplantI am sitting in the very same room that Gabriel entered the day of his transplant. This room is shadowed with much pain from the first few weeks post-transplant. This journey post-transplant, had many facets that caused us and the team to be concerned. BUT, God delivered us faithfully as his Word instructs. I had shared in my previous post that I was not certain of the days ahead, but I trust my Father in heaven to continue protecting my son.
We are sitting in this room once again as my son's CMV has reactivated. We are thankful for the efficiency and knowledge of Sick Kids to ensure Gabriel receives expedient care. We are disappointed to be here so soon after discharge that are also compounded with the memories of this room. Perhaps, it is a place I need to be as means to heal and move forward beyond the horrors of this room. My son is sitting beside me laughing and playing, which is a contrast of his behavior from only two weeks ago. I am thankful for how far we have come when I think about where we started so long ago in February of 2009. My three year fighting cancer at diagnosis to relapse and fighting cancer again. He has now received a new marrow that gives him a renewed life of physical health. Mike and I have gone through many nights of fearing the death of our son to realizing that we have to trust in God's scriptures that healing is ours when we have faith to believe.
Today, our journey continues with uncertainty based upon the unknown realities of this journey. Gabriel's vulnerability to minor infections can place him at a high risk. Our goal for the next six months to one year is to protect him. I wanted to take this opportunity to share what our life looks like while living at Ronald McDonald house and when we return home. I know there are many people who hear the words "discharge" and believe that all is completed in this journey. Perhaps, even the assumption that Ronald McDonald house is like a long term vacation for our family. I thought it would be helpful to provide a perspective of daily life and the future.
The doctors keep advising us that everything takes time. Time...we know this word well as it also coincides with the word "waiting." These two words continue to be the theme describing this journey.
Our Life...
Upon discharge from the hospital means his care is transferred to home care nursing and to mom nursing (my new role). Gabriel has a nurse that comes into our apartment twice a day. In the morning she sets up IV antibiotic to ensure the lung infiltrates are gone, which was from the concern with pneumonia. This IV antibiotic will last for another 30 days. Gabriel has high blood pressure that he receives medication for in the evening, so he requires blood pressure monitoring three times a day. Once his med runs over the hour the nurse leaves and returns in the evening to connect Gabriel to his IV once again for 12 hours of IV hydration. Gabriel's eating and drinking has not normalized at this stage. Gabriel was not drinking or eating for over three weeks, so his body has to reaestablish itself again to this process. IV hydration assists with the fluids he is currently lacking. Gabriel receives numerous medications both in the morning and evening to prevent further complication of GVHD (see previous post for explanation of GVHD). He also receives preventative meds for infections that can be life threatening if he was to contract such infections. In addition to Gabriel's transferred medical care to the house we have to avoid exposure to anyone we do not know. The other difficult aspect of this journey is Gabriel cannot be indoors in large family gatherings as the infection risk is too high. So, transplant has been complete and engraftment has started, but Gabriel's body still does not recognize the new marrow as his cells. His body is still fighting to kill these new cells, so the medications he receives causes his suppression of his immune system to allow the new ones to move in and take over. This is why GVHD is present. As a result, the team cannot determine what the future holds, but is ready to respond when they have any visible signs of complication. Today is an example of the unpredictable nature of this journey as we are admitted so soon after discharge because of a virus that has began to be reactivated and if not caughht soon enou could be fatal. Gabriel's bloodwork started to show signs of reactivation of CMV (explanation in previous post), and the team wants to treat as soon as possible before complications ensue. This virus is checked every Monday because of the severity and commonality of this virus among BMT patients for those who were positive prior to transplant.
Even though medical care continues even after discharge I am ecstatic about being together with the people that matter the most to me in this world. My husband and my three children can be a family together no matter what life throws at us. We are happy just to be together as long as we are together. Yesterday, we played hide and seek in the Jays room (indoor gym at Ronald McDonald house) with the lights out. I have not laughed so hard in a long time. Just my family playing silly hide and go seek. It was perfect...
My New Role
I never envisioned that another hat I would wear was to be a participant in my son's medical care. I was instructed to take Gabriel's blood pressure manually, which is very interesting. I have used electronic blood pressure monitors, but 8b prefers manual blood pressure as it is more accurate. I was given a crash course and I am beginning to feel confident. I have learned to provide IV hydration, to flush and heparinize Gabriel's Hickman. I woke this morning to stop his IV and to take care of his central line. Finally, if Gabriel's blood pressure is too high then I have to determine if he needs a nifedipine, which is medicine placed under his tongue that drops his blood pressure very quickly. I have to make sure Gabriel's blood pressure meets his criteria to be given this medication. At this time I am working at trying to get Gabriel used to his dad taking on some of these roles. Gabriel has wanted only me to provide this care, but we are trying to help Gabriel feel secure knowing daddy is just as good as mommy.
The Future
I explained above a few details as to the future about protecting Gabriel from infections and the risk of GVHD. Our criteria given by the hospital for assessing infections and visits is based upon a household being seven days without any symptoms, which includes colds. If one person is sick in a household then we cannot visit with anyone in that household. This will be the hardest part for Mike and I as it seems more stringent than our previous concerns when Gabriel had neutropenia (low counts to fight infections). This will not be forever is what encourages us. The concerns decrease the further we are from his transplant day. The milestones (the ones we celebrate) carry on starting from 2009, and this is just another path in this journey that also has completion dates that we can celebrate. One day we will have a huge celebration for our son. A celebration for a renewed life...a celebration to say thank you to everyone who have supported us....and a big party as a way to give back.
We look forward to meeting people who have supported us and reconnecting with others we have not seen and spending time with you all at a wonderful day of celebration. One day soon this will be here.... Thank you for reading and following our journey.Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-21790369647853458002012-06-25T23:52:00.002-04:002012-06-26T00:01:36.065-04:00Day +24: In Life there is Valleys and Mountains<div dir="ltr" style="text-align: left;" trbidi="on">
Tonight, as I sit to write this post my fingers seem to rest on the keys of my computer seemingly replicating most of my posts over these past few months. I find that my words do not come as easy. Perhaps, exhaustion and/or contemplating the exact words has come to be a daunting task.<br />
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The past 30 days have provided many opportunities for reflection over these past 3.5 years. I have reflected upon what I have learned, where I need to grow, and who I want to be as a person to my children, husband, family and friends. My reflection time often triggers memories of events causing me to think about what I have learned and blessings in each memory so that I don't feel the weight of this world.<br />
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It was during a time of reflection a poignant memory shockingly surfaced. This memory had images of me visiting the outpatient clinic at the London Pediatric Medical Day Unit, which I grew accustomed to with my three children. However, the image that came was very different compared to previous memories. I had been collecting bravery beads for my son for a long time. On this particular day I went to gather beads that reflected the procedures he has received over the past week, but what was different was it was the first day I noticed the bead for a bone marrow transplant. I remember looking at that bead, and feeling many emotions and experiencing many thoughts. This bead stood out more that day than any other day. I am sure most families going through this journey fear relapse. They fear having to place that bead upon their child's necklace marking this particular story in their journey. I am not and was not unlike any other parent who feared relapse and a bone marrow transplant in this journey. I believe it was that day I stopped collecting my son's beads. I never thought that this day would become a reality for my son...my family.<br />
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Fear has a lot of power over ones choices and path in which they follow. I am not suggesting fear created this path in this journey, but it can make ones life very difficult. You lose sight on blessings, and only fear the future. You limit your life and those around you when fear is your leader. I can honestly say that fighting "the spirit of fear" as a believer in Jesus Christ in this journey has been and continues to be the hardest fight. The bible states “For God has not given us a spirit of fear, but of power and of love and
of a sound mind.” A spirit of fearfulness and timidity does not
come from God. (2 Timothy 1:7). This spirit of fear has overcome me at times, and it is during that time I have needed to trust in and love God completely or this fear would have crippled me. I could not allow this to occur for my family and for myself. God has called me to trust, and not to lean on my own understanding. I need to be faithful to God's commandments and will for my life. But, this is a constant and sometimes daily journey for me. I am often crying on my knees during my most weakest times when I have received concerning news from the hospital. My relationship has grown stronger and closer to God because He has shown me at my most darkest hour His love. He is the one that has lifted me up when I had no more to give. God gives me the strength to endure and move forward in this journey with thankfulness in my heart. I have seen God's hands on many aspects of this journey. It is not the journey that I would have chosen or the process in which I would have chosen it to be, but God has been in this journey holding us in His hands. I have seen many prayers answered and felt God's presence through the Holy Spirit.<br />
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My son engrafted on Day +18, and was immediately given a step down room that day. I never expected Gabriel to engraft so quickly. In addition, we were advised that platelet engraftment can sometimes take more than 30 days to engraft. My son's platelets engrafted around Day +23. Gabriel was fighting three infections, and one being pneumonia without an immune system. He was protected and delivered from these infections. One week from being in isolation he was given a pass to leave the hospital for an outing to Ronald McDonald house two days in a row. I am thankful for these blessings. God is my light amidst this storm.<br />
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<u><b>The Next Phase </b></u><br />
<br />
I don't know what the next phase of this journey will look like in particular for my son. I am aware of the risks over the next 100 days, six months, one year and two years. The time we are focusing on at the present is the 100 days. Gabriel prior to engraftment had a full body rash and spiked a fever that lasted for more than 8 days. The fever and the rash was suggesting three possibilities defined either as engraftment syndrome or pre-engraftment or Graft versus Host Disease. The only way they could diagnose this rash/fever was once he engrafted. On Day +18, the head doctor came to assess Gabriel and advised us that Gabriel has Graft versus Host Disease (GVHD). When Gabriel's body began to fight the new donor cells, it appeared as a rash. It is coined Graft versus Leukemia when it comes in the form of a body rash and stays only as a body rash. A little bit of this disease causes the body to fight and destroy any remaining cancer, which is why it is defined as Graft versus Leukemia. Research is amazing and powerful. However, too much of GVHD is when it goes beyond a rash and starts to go after such organs as his liver, gut, etc.. We don't want this to happen, and so Gabriel is receiving two medications to suppress his immune system so his new cells can overtake his own, but this also creates a risk to triggering infections as his immune system is suppressed. As a result, it is a balancing act of suppressing his immune system with steroids to prevent further GVHD, while not staying on steroids too long so that serious infections are not triggered, such as CMV. Gabriel is positive for CMV. Statistically, most children undergoing transplant are CMV positive as we are usually exposed to this virus as a child. A healthy immune system can fight this virus. Suppressed immune systems cannot fight this virus without assistance and can become serious. <span class="text_exposed_show"> (CMV is a member of the herpes virus family that includes chicken pox, cold sores, and infectious mononucleosis (mono).)</span><br />
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I am constantly reminded that this journey continues to have both valleys and hills. I don't know what the next few weeks will look like, but I do know that the only way I can walk through this journey to the end is with God as the leader of my life.<br />
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<u><b>Tonight... </b></u><br />
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Just 30 minutes prior to starting to write this post (that has taken me forever to be able to log on to blogger) I received word from my husband (his turn at the hospital) that our son spiked a fever. My fear surfaced and my mind went straight to the worse case scenario. The Holy Spirit quickly interrupted those thoughts with trust in the Lord with all your strength, and "calleth those things that be not, as though they were." My son is healed! I will continue to proclaim this and trust in God for my son's healing. Please continue to proclaim this alongside me that my son is healed. <br />
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</div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-25159207067582183272012-06-07T23:11:00.004-04:002012-06-07T23:11:43.289-04:00An Update as We Enter Day +7<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Calibri;">I have been writing my posts on facebook as I know most
people log on to receive updates.<span style="mso-spacerun: yes;">
</span>However, this blog has been one that I have kept since Gabriel was
diagnosed at three years of age.<span style="mso-spacerun: yes;"> </span>One day
when Gabriel looks back on this journey I will provide him with a printed copy
of this journal/blog when he is old and mature enough to conceive all that he
has gone through in the words of his mom.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Gabriel has completed his three rounds of cranial radiation,
three days of morning and afternoon full-body radiation.<span style="mso-spacerun: yes;"> </span>Gabriel did well going through this treatment,
but began to feel tired at the end of his full body radiation.<span style="mso-spacerun: yes;"> </span>He was admitted as inpatient on the final day
of cranial radiation in preparation for high dose chemotherapy.<span style="mso-spacerun: yes;"> </span>He kept his energy and appetite during the
duration of high dose chemotherapy.<span style="mso-spacerun: yes;"> </span>The
day of his transplant can only be described as something so amazing, but the
day itself being anticlimactic.<span style="mso-spacerun: yes;"> </span>A bone
marrow transplant is similar to receiving a blood transfusion.<span style="mso-spacerun: yes;"> </span>The difficult part of this journey begun when
his blood counts crashed and his immune system bottomed out.<span style="mso-spacerun: yes;"> </span>The difficult part of this journey began on
Day +5 when Gabriel spiked his first fever and got his first mouth sore from
the high dose chemotherapy. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">We are living at Ronald McDonald House (RMH) Toronto in a
beautifully renovated building.<span style="mso-spacerun: yes;"> </span>We began
our stay in one large room with two beds for our family of five, and then
decreasing to just three of us at one time staying in the room. <span style="mso-spacerun: yes;"> </span>Recently, we were transferred to an apartment
located within RMH as we are considered a longterm family and having other
children in the house.<span style="mso-spacerun: yes;"> </span>We feel very
blessed to be given this apartment as it feels like a home away from home.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Our
girls permanently live at RMH, and are cared for by one set of grandparents who
switch to another set of grandparents every seven days.<span style="mso-spacerun: yes;"> </span>My parents and Mike’s parents have graciously
made it their goal to help us get through this journey by being with our girls
during the day.<span style="mso-spacerun: yes;"> </span>Mike and I take turns
with the girls in the evening as only one of us stays with Gabriel.<span style="mso-spacerun: yes;"> </span>We are doing 24 hour shifts at the hospital
with our son.<span style="mso-spacerun: yes;"> </span>It has been difficult for
me because Gabriel finds comfort with having me there and struggles when I
leave.<span style="mso-spacerun: yes;"> </span>I come more frequently as he only
wants me to do his sponge baths and bandage changes for his Hickman.<span style="mso-spacerun: yes;"> </span>We had one difficult evening when Gabriel
spiked his fever as they have to take peripheral blood from his arm.<span style="mso-spacerun: yes;"> </span>He only wants me there for this bloodwork, but
I was hoping that his dad could do this without me.<span style="mso-spacerun: yes;"> </span>However, I decided to leave and did not
arrive on time as the team needed to do his peripheral blood to test for
infections.<span style="mso-spacerun: yes;"> </span>We are now at day +6, and
Gabriel is having much pain and discomfort that is being controlled by pain
medications.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Day +6:<span style="mso-spacerun: yes;"> </span>This journey
bears its greatest weight when our son struggles emotionally and physically.<span style="mso-spacerun: yes;"> </span>For 3.5 years we have come to be alerted for
any signs of infections that roam throughout the community.<span style="mso-spacerun: yes;"> </span>We adapted to rushing to the emergency department
in the middle of the night in London at the first sign of a fever to then be
admitted as inpatients.<span style="mso-spacerun: yes;"> </span>However, this
new phase feels more difficult than I envisioned.<span style="mso-spacerun: yes;"> </span>The team of Doctors who follow BMT patients
advised us that statistically Day +5 is when mouth and throat pain may start (similar
to canker sores throughout your entire mouth and throat), diarrhea, nausea, and
possibly fevers.<span style="mso-spacerun: yes;"> </span>I sit beside my son hugging
and touching his head attempting to understand how I can help him. <span style="mso-spacerun: yes;"> </span>A mother's pain is the greatest when your own
child suffers, and is multiplied when you cannot do anything to minimize this
pain.<span style="mso-spacerun: yes;"> </span>My son has started a continuous morphine
infusion to help with this pain, which also results in monitoring his oxygen
saturation levels as this is a serious narcotic.<span style="mso-spacerun: yes;"> </span>Gabriel is also receiving around the clock IV
antibiotics to prevent and/or fight what is causing his fever the past two days.<span style="mso-spacerun: yes;"> </span>He is also eating minimally and is now receiving
TPN, which is IV nutrition.<span style="mso-spacerun: yes;"> </span>We are
reassured by the team that this is a “text book” example of a BMT post –transplant
patient.<span style="mso-spacerun: yes;"> </span>I am still challenging myself
to feel “reassured” by this description of my son.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The only place I go when I am feeling emotional pain is to
trust the one whom gives peace beyond comprehension.<span style="mso-spacerun: yes;"> </span>I continue to pray and seek Scriptural Words
of Truth written for us all to read. <span style="mso-spacerun: yes;"> </span>The
bible has taught me much these past few months, and I have been challenged to
believe in this truth.<span style="mso-spacerun: yes;"> </span>It is not just a
book you read, but a book that carves your entire destination.<span style="mso-spacerun: yes;"> </span>I admit that I have not always abided by the
word of God, and I am still learning about myself and God. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>I trust and believe
that God continues to protect and heal my son, as I know He loves him even more
than I.<span style="mso-spacerun: yes;"> </span>I may weep as any mom would when
her son suffers, but they are not tears of distrust.<span style="mso-spacerun: yes;"> </span>These tears I shed are lifted up to my father
in heave to ease my pain and burden.<span style="mso-spacerun: yes;"> </span>I
may not understand and know the days beyond today, but I lift my mind and heart
to you oh Lord for this burden is heavy.<span style="mso-spacerun: yes;">
</span>I wish I could explain why this journey or why this suffering.<span style="mso-spacerun: yes;"> </span>I cannot, but I do know that God will be here
and He will be glorified.<span style="mso-spacerun: yes;"> </span>God’s glory
comes when ones journey is used for a greater good to serve for God’s
purpose.<span style="mso-spacerun: yes;"> </span>I stand firm and believe that
my son will be healed and have an amazing testimony. <span style="mso-spacerun: yes;"> </span>I believe in this for my son. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">God has provided me with peace throughout this journey.<span style="mso-spacerun: yes;"> </span>But, I cannot deny that this journey is hard
and emotional.<span style="mso-spacerun: yes;"> </span>It is the unpredictability
that catches me and reminds me to lay my sorrow down so that my Father in
Heaven can carry it for me.<span style="mso-spacerun: yes;"> </span>So I
continue on this journey with the reminder that I must continue to seek God
through prayer and in His word.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;">I waited patiently for
God to help me; then He listened and heard my cry. He lifted me out of the pit
of despair, out from the bog and the mire, and set my feet on a hard, firm path
and steadied me as I walked along. He has given me a new song to sing, of
praises to our God. Now many will hear of the glorious things He did for me,
and stand in awe before the Lord, and put their trust in Him.<o:p></o:p></span></i></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri;">Psalm 40:1-3<o:p></o:p></span></i></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">This journey has brought many wonderful people into our
life.<span style="mso-spacerun: yes;"> </span>God has shown us much during this
journey that I am so grateful for experiencing.<span style="mso-spacerun: yes;">
</span>I am thankful to everyone who continues to encourage and inspire us
through your messages of support.<span style="mso-spacerun: yes;"> </span>No
person should do this journey in isolation.<span style="mso-spacerun: yes;">
</span>We came to realize this once our son relapsed because prior to these
past six months we tried isolation.<span style="mso-spacerun: yes;">
</span>Support from friends and family has been a wonderful blessing in our
lives.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
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</div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-72272866881683261142012-05-25T23:18:00.003-04:002012-05-25T23:34:50.165-04:00A New Phase has Begun...<div dir="ltr" style="text-align: left;" trbidi="on">
In the beginning of this journey ...I feared, I cried, I laughed, and now I wait with anticipation, enduring love, and faith that God will forever heal my son through medical means. This journey has been long. We started on February 10th, 2009 and was scheduled to end on June 2, 2012. But, one day before what should have been the end of treatment he will begin a new phase. On June 1st, 2012, Gabriel will begin Day 0 of his Bone Marrow Transplant (BMT). I am sitting at day (minus)-7 writing a post and it seems the words are not flowing easy. My room at Ronald McDonald House Toronto is dark and quiet as my girls are sleeping soundly in the background. My hands type slowly and cautiously so not to wake them as my fingers tap the keys on the computer. This room feels strange and incomplete. Two of my family members are missing. I miss my son. I miss my daughters. I miss my husband. I miss that my family cannot be whole at this time. My heart aches and yearns for the moments I took for granted in the past. The times where I wished I could be sleeping longer, but woke to the sounds of children fighting and/or laughter. Now, I want my children to wake me with their "normal" sibling conflicts and early morning chatter. I want to experience the simplicity of family. I want monotonous family routines that involve taking my kids to school, swimming lessons, soccer, and ballet. I want this choice. Yet, in this moment.... I do not! I wake each morning either in a hospital room to medical staff preparing me for the day, or to getting my daughters ready so that I can say goodbye to them. I have...but one choice... to rise with peace, happiness and confidence that one day I will re-experience the family life I now envision in the future. I have a choice to how I respond in this journey. I feel sorrow, and I fear some days. However, this is not the foundation of my soul. The greatest choice I will continue to strive for is to look to God for strength and peace to know that one day my family will be joined together to experience the rituals that I once took for granted. Cancer will not have the last say in my family. Mike, I and my three children will rise against this disease so that we will one day have each other to hold close forever.<br />
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If I can offer to all that read this post...don't wait to hold your children to tell them everyday the positive characteristics each have. This life on earth seeks superficial means to find happiness. This happiness is fleeting. Look to those you love and rejoice in people. Rejoice in God. There will always be someone that hurts you and you will want to hold a grudge. The only person this hurts the most is yourself. Free yourself of all pain and seek what is truly happiness. My happiness is found in my heavenly Father, my family, and my friends. This journey has realigned and reinforced what is important for me, but I would not wish this journey on anyone. I just want others to take what I have learned without having to experience this journey. Slow down...love much, laugh often, and rejoice in everything that is good!<br />
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<b><u>Update on Gabriel's Progress</u></b><br />
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Gabriel began treatment on Tuesday, May 22 with his first cranial radiation or boost as the doctors like to call this procedure. Gabriel received three treatments of cranial radiation Tuesday, Wednesday, and Thursday. After Gabriel's first treatment of radiation he complained of an excruciating headache. My heart cried out to God to take this pain away from him for the remainder of his treatment. Gabriel did not have anymore headaches. I am thankful to God for answering all of our prayers over Gabriel's headache. I shared with Gabriel that mommy was praying for him in the shower. The next day just prior to his radiation Gabriel asked me to pray again so that he did not get another headache. Gabriel realized in that moment that God does answer prayers. <br />
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On Thursday, Gabriel was admitted as an inpatient at 3:00 p.m. to begin fluids for high dose chemotherapy. Today, May 25th, Gabriel started high dose chemo. He is expected to become sick with this chemotherapy, but I am praying that Gabriel does not suffer with any nausea or mouth sores. Gabriel will continue receiving high dose chemo until Monday. <br />
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Tuesday, May 29th, Wednesday, May 30th, and Thursday, May 31st, Gabriel will receive total body radiation (TBI) consisting of a morning and afternoon treatment on all three of those days. This will be a hard few days for Mike and I as we watch our son undergo this intensive radiation. Mike and I struggled with the cranial radiation as we both had to leave our son behind to receive this treatment. Gabriel held his "radiation buddy" a lamb, and his blanket. He was strapped down with a seat belt, and a fitted mask for exact treatment. This mask was clasped down to the bed so he could not move. I Hated this... Gabriel did not experience any pain during treatment, and was able to watch Lightening McQueen. It is the parents who struggle mostly with many of the details as we know too much. When Gabriel asks questions we explain to him in ways that he will understand. Gabriel feels empowered knowing information about his treatment. He asks questions, and we answer. The nurses always think it is amazing how much our son knows about procedures and treatment. He is actually helping the nurses out when he is allowed.<br />
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On June 1st, 2012, Gabriel will receive his new bone marrow from the unrelated donor. Our donor is a male and is a 10/10 match for HLA typing. It will be this day that Gabriel will go into complete isolation. Gabriel will not be allowed to see his sisters from anywhere from 2-4 weeks or more. Mike, I and my sister-in-law Carolyn (our alternate) are the only people our son will be allowed to see during this time. <br />
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<b><u>Thankful</u></b><br />
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1. I am thankful for our Heavenly Father whom answers prayers <br />
2. Thankful to all of our family and friends who have supported us.<br />
3. Thankful for making new friends through this journey.<br />
4. Thankful for Jacob's Story and all that you have done for us.<br />
5. Thankful for Trevor, Jen and Geoff (my in-laws) who have completed two fundraisers<br />
in Alberta for my family.<br />
6. Thankful for my parents and parent-in-laws for helping with our girls while at RMH.<br />
7. Thankful for Dave and Carolyn for supporting us through being available to help us and for the slide show.<br />
8.Thankful to Todd and Tina for providing some fun for our children before this journey started and so Mike and I could escape for a day and evening together.<br />
9. Thankful to all those who have donated and supported us financially. We are excited to say that both Mike and I will be able to stay with our son as he is in Toronto. You have made this happen for us. Thank you! You have given us an amazing gift knowing that both Mike and I can take time off from work to be here with Gabriel.<br />
10. Thankful to all those who continued to make us meals.<br />
11. Thankful to everyone who sends us words of encouragement on my blog and/or facebook.<br />
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<u><b>Prayers</b></u><br />
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1. Please continue to pray that Gabriel does not get Graft versus Host Disease<br />
2. Gabriel engrafts and quickly<br />
3. Protection over him from infections<br />
4. No future complications from his transplant<br />
5. No future cancers<br />
6. Protection from infections for Mike, I, our girls and grandparents. <br />
7. That one day Gabriel will share his testimony and will inspire others in the future.<br />
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<span class="style12">"<i>Come to me,
all you who are weary and burdened, and I will give you rest. Take my
yoke upon you and learn from me, for I am gentle and humble in heart,
and you will find rest for your souls. For my yoke is easy and my burden
is light."</i></span>
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John 14:27</div>
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<br /></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com2tag:blogger.com,1999:blog-6105273762108316971.post-80825331442424110042012-04-26T17:36:00.003-04:002012-04-28T10:23:47.273-04:00As I Continue to Walk...<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Since my last post Mike and I have been attending meetings with our Oncologist from London, the transplant team and the Urologist from Sick kids. Our meetings with Sick Kids have been via video conferencing, which seems surreal when discussing your child's risk and benefits of his bone marrow transplant. We received a vast amount of information that left Mike and I feeling sad, frustrated and withdrawn. This information we received was a discussion of his risks immediately after his transplant, the 100 days post-transplant, and risks pertaining to the span of his lifetime. However, we know that the best prognosis for our son's life is to receive a bone marrow transplant. My son has been matched with an unrelated bone marrow donor from the registry. His match is a 10/10 match for HLA typing and is also a male. The only match this donor does not have is the same blood type as Gabriel. The donor's blood type is A+, and my son's blood type is O+. The optimal donor is one that has all of the above (same gender, 10/10 match, and blood type). However, blood type is one of the lower concerns on their list. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I have many thoughts and emotions racing through my mind that it seems difficult to find words that convey the impact of these meetings on this computer screen. I am going to try my best to provide an update with some internal thoughts/emotions within this post. It seems my words as I reread and rewrite are resulting in an injustice to the reality of this journey for my son, my daughters, my husband and myself.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I only focus only on what today brings me. I don't focus on yesterday or tomorrow. There is no happiness or positivity gained when your mind constantly plays out the sequencing of this journey. There are days when I have to regain composure in the silence of my own room, but once revitalized I look to what blessings this day will provide. In these positive moments in our family's life I am reminded that it is not my strength, but that of God's grace and assurance of His protection and peace. I would be confessing dishonesty if I said that I was not scared. I am scared when my mind drifts to the near and far future, but I am quick to pray to God to allign my thoughts with trusting God's hands upon this journey.</span> <span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I want this chapter of my son's life to come to a close so that he can experience a positive and normal life. I believe one day that I will see my son as a grown man walking and sharing his amazing testimony. My son amazes me with the person he has come to be thus far in his young years. His strength, courage, and passion is beyond his years. I never thought I would aspire to have traits of a child. The attributes my son carries with him bears witness to God's enduring love. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We continue to walk...together as a family...day by day...exemplifying characteristics of one that is positive, faithful, and happy for the blessed moments we are given as a family.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We were advised on three tentative dates for our son's bone marrow transplant. The donor has three options for dates. The first date is May 30/31, and the other two dates fall within one week of each other. The first date is the time frame in which Sick Kids and London have organized preparatory tests and screening prior to Gabriel's transplant. Gabriel's tests include an ECG and pulmonary function, dental to determine risk for infection, renal scan, and finally, the one my son will dread and fear the most is the removal of his port-a-cathe to be replaced with a hickman. A port-a-cathe only has one access point where Gabriel can only receive medications or transfusions in isolation, which is not ideal for a bone marrow transplant. A hickman allows a patient to receive a transfusion and antibiotics simultaneously, which he will require as his bone marrow begins production of its new blood products. If you are asking yourself this question "Will Gabriel now be considered A+ blood type now that he has received a donor's marrow?" The answer is yes. My son will no longer be O+, but A+. We are grateful beyond words for our donor, and hope in two years we can meet him. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Once the date is confirmed for Gabriel's transplant we are to proceed to Sick Kids two weeks prior to the transplant. Our son will receive high-dose chemo, cranial and full body radiation to kill his own marrow and any remaining cancer prior to his transplant.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I mentioned above that Mike and I participated in a video conference with an Urologist, which was by our request. We discovered during our research that there is relatively new research that take testicular tissue and freezes it for future use by the patient if he decides at that time. However, this procedure is only an experimental procedure for young boys as there are no proven fertility methods for prepubescent boys. There have been no live births thus far. It is expected that this tissue will contain stem cells that can later produce mature sperm. We have investigated this option for Gabriel as it is 99.9% that he will become infertile as a result of radiation. There are too many times when children going through cancer treatment have so many life's normal activities and future prospects taken away. We wanted to provide our son with something that he can one day make a decision about for himself. I hope one day this will become possible for my son. We believe...just as our Urologist stated it is our "pie in the sky" to believe that this procedure will one day allow Gabriel and so many other boys a chance to choose.</span> <span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We believe at the rate of technological changes that in 20 years Gabriel may have a viable options to have his own children. Gabriel will be the first child in all of Canada to have completed this procedure. There are doctors conducting this procedure and freezing of testicular tissue in Germany and only a select few hospitals in the States. The procedure will be occurring at the same time as our son's surgery for his hickman, so he will only have to undergo general anesthetic once. The surgery involves making a small incision and then using a small needled to remove this tissue. Gabriel will only need one suture to close this incision. Our main concern was the risk for infection so close to his bone marrow transplant. There is about 1% risk for infection.</span> <span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We anticipate this surgery will be completed in 1.5 weeks from today, which is enough time between his transplant.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Research is powerful tool that we have come to know much about since our journey has started. Most information and/or concerns have come from staying informed through reading and asking many questions. We have come to learn a lot about the pros and cons of the medical care system.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">As we wait for Gabriel's date to approach he spends a lot of time at the London hospital with myself, his sisters, and his dad as an outpatient and/or inpatient. Gabriel must continue receiving chemotherapy until his transplant as it poses a great risk the return of his cancer when waiting without any treatment. It is hard knowing that Gabriel continues to receive chemo for the purpose of waiting and knowing that if he stops that cancer could return. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We continue to walk...with our children...as a family...holding each other up with fond memories, fun moments at home and in the hospital. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I was recently asked if I was growing weary. I believe there are days as a mom to a child fighting cancer for over three years and to two daughters that I feel tired and exhausted. The emotional aspect of this journey is very draining on a parent because we know so much about cancer and the procedures. These emotions are real for both Mike and I, and the fear at times becomes the most pronounced emotion. There are days when Mike and I just crash on the couch sitting in silence long after our children are sleeping in their beds. At times we do this together and other times we are in separate locations (hospital and Ronald McDonald house). The days at home together we rehearse the days to come and summarize what we have gone through. It takes our entire being some days to look at each other and say...lets talk about something fun. Lets do something fun. A parental experience of walking with your child is the aspect of this journey that is not shared enough. Most parents walking this journey have many moments when fear of losing your child to cancer becomes heart wrenching. I admit that the main emotion that encompasses this journey is this fear of loss. The stories you hear and the families you meet, and the children who have lost their lives to cancer have been a part of our story. We have met families who have suffered through loss. How can a parent not fear this story for your own child? It is all around us as we walk the halls of the Oncology wing at the hospital. We see pictures of children who have lost their battle. Some we know and some we do not. We talk to parents at Camp Trillium, and we read. We know what cancer does to children, their siblings and their parents. Mike and I would do anything to protect our children. We have learned twice that we cannot protect our children from some things in this world. Our son facing cancer twice has reminded me that I could not stop this pain from entering my son's body. This journey is hard, but from my previous letter it is a journey I have come to learn how precious life is. There are blessings in each day. My strength is not my own, but through God's amazing grace and mercy on my son's life, my daughter's lives, my husband's life and my life. I trust in Him entirely.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I continue to walk..with peace, love, and faith.</span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">"Don't be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." </span></div>
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<b>Philippians 4:4-6</b></div>
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<b>Thank you</b></div>
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I want to continue to thank you everyone who has provided our family with delicious food, as it has been incredibly helpful after a long day or week at the hospital. It is wonderful knowing that it is one less job that I have to attend to.</div>
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Thank you to Jacob's Story for organizing and leading the fundraisers in our community. Thank you for organizing the barbecue at the post office, and the upcoming dance on May 26th at the soccer club. Thank you to Bill and Jessica for looking for great opportunities for some fun for our family (TFC soccer tickets). It has been hard with our schedules to make these activities work based upon our time in the hospital, but we would like you to know how grateful we are to you both for your support and time to find everlasting memories for our family.</div>
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Thank you to our families for being here for us when we need you. Everyone on the Bender and Smith side has shown us much love and willingness to stop things to be here for us. We love you all!</div>
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Thank you to Kyra.. my dear best friend who has taken the lead as my family's spokesperson. You truly are more then my best friend, but my sister too! I am thankful for all that you have done to help and representing us so well.</div>
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Thank you to 104.7 Heart Fm for pledging to support Gabriel's goal through the upcoming Navy Vets charity hockey game.</div>
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Thank you to everyone who has helped us financially with a donation. Your financial gifts will be a tremendous help when we are at Sick Kids, as both Mike and I will not be working. This help will ease the burden so that we can continue to focus on our son and our daughters through this difficult time.</div>
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I wish I could personally thank everyone for all that you have done for our family. Please know that I am sending a virtual hug and a great big thank you to everyone that has supported us. I hope one day that I will be able to personally give back by thanking you all in some way. At this time, I hope that a thank you in my post will help to know how much we appreciate your giving.</div>
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<b>Please Pray for the Following:</b></div>
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1. Protection over Gabriel's body so there is no long term complications radiation and high-dose chemo.</div>
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2. Gabriel does not get Host versus Graft disease. To read more about this disease please click on the following link to understand more specifics about this disease. http://www.llscanada.org/diseaseinformation/managingyourcancer/treatmentnextsteps/typesoftreatment/stemcelltransplant/graftvshostdisease/</div>
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3. Gabriel's new marrow engrafts and his blood counts climb quickly to decrease the risk for infections.</div>
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4. No future cancers </div>
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5. Does not get any infections in his most critical days.</div>
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6. Our daughters and their grandparents do not contract any infections while they are caring for our daughters at Ronald McDonald house.</div>
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7. Mike and I remain infection free.</div>
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8. No long term cognitive or physical development issues. </div>
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9. Peace and strength for Mike and I as we continue on this long journey.</div>
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<br /></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0tag:blogger.com,1999:blog-6105273762108316971.post-17316402307348110042012-04-01T22:09:00.004-04:002012-04-01T22:15:15.521-04:00A Letter to Leukemia<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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<div class="MsoNormal">Dear: Leukemia,</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I am not sure how to begin this letter, but to say that you have given me more pain in my life than I could have ever fathomed. I have felt much pain, but you sure have outdone yourself. I do not like to use the word hate, but I have often felt this way about you. I fear you and want you to go away FOREVER. You make my son undergo toxic chemicals and radiation in hopes that you will never return, but I still fear. I dislike that you have caused me to constantly over-analyze my parenting so that my three children grow up to feel some normalcy in their lives and to be happy in spite of the separation you cause our family. I hate that you don’t care about the sickness you cause my son with the medicines he takes, the painful needles, transfusions, the constant concern about washing hands, the risks from contracting infections, and not being able to play whenever he wants like a little boy. You have reduced most of my son’s life to fighting cancer. Please go away and stay away. Please don’t ravage my son’s body any longer now or in the future. Please go away so that my family can be normal.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Shockingly, I also want to say thank you to you, leukemia. I would have wanted this lesson to be reinforced in another way, but this is my journey. I do not thank you for what you have done to my son, but what you have taught and reinforced for me. You have taught me about what really matters in this world. You have helped me learn to love like I have never loved before. You have reinforced what God has been teaching me about appreciating the little things in life, to laugh at the mistakes I make, to love all people no matter their frailties as we are all imperfect. You have reminded me to not grumble and complain about things in this world that don’t matter (food, wasted time, bad drivers, etc.…) You have created opportunities to make new friends and to grow closer to people in my life. You have opened the opportunities to share, to inspire and to find a passion for my future. I will fight a good fight to help those that are in despair from what you do to families. You cannot and will not cripple me. You make me cry…a lot, but my tears are not from weakness. You make me sad, but this sadness is not my leader. My leader is my Heavenly Father whom brings me comfort and peace. You have blindsided me, but you will not win.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Sincerely,</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Tina Smith</div><div class="MsoNormal"> (A mom to the most amazing son)<br />
<br />
Cancer is so limited...<br />
It cannot cripple love.<br />
It cannot shatter hope.<br />
It cannot corrode faith.<br />
It cannot eat away peace.<br />
It cannot destroy confidence.<br />
It cannot kill friendship.<br />
It cannot shut out memories.<br />
It cannot silence courage.<br />
It cannot reduce eternal life.<br />
It cannot quench the Spirit. </div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-91156002528887113532012-03-20T14:00:00.003-04:002012-03-20T14:07:28.162-04:00Relentless<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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<div class="MsoNormal">Do you ever have a time where life’s negativities seem relentless? That you want to wake to a newness and completeness that feels better than the days leading up today? I do! Some days are stronger and other days I am reminded that I can bear all things with God by my side. However, my human side that comes from pain and suffering sometimes does burst to the forefront of my thoughts. Sometimes I have those days that I wake to reminders that all that made me feel “normal” has been taken. I know that these emotionally disturbances will awake in my spirit during unpredictable moments in this journey. Relentless is a word that I often describe this journey, which often awakes deeper pains from my past where suffering once was a story of my life long ago. An ongoing journey within my soul to ask God of my destination and how can I use all this suffering to help those around me. I want the feeling of relentless to dissipate, so it no longer symbolizes my journey. There are many good days where I feel God’s hand upon my life and the peace that flows. I see God’s hand throughout many moments in my life from the people He has brought to my life to the only remarkable events in my life that can only be explained as the almighty power of God. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Many people have asked about this journey with our son and what it looks like for our family. As I have sit here trying to create an image for those reading my post that allow some insight into everyday life…it is hard. However, I am going to try to provide insight into our days, weeks, and months and why I feel the word Relentless stands out for me.</div><div class="MsoNormal" style="color: white;"><br />
</div><div class="MsoNormal" style="color: white;"><b style="mso-bidi-font-weight: normal;"><u>A Glimpse in the Present and Future</u></b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">My son, since 2009, has been fighting cancer. My son has been fighting cancer over half of his life. His mom and dad have been fighting for normalcy and health for all three of our children for almost 3.5 years. Our daughters have spent more of their life behind walls of a hospital and interacting with hospital staff. My children are at their most comfort in a hospital, but once we are in the community they become insecure and shy. At a park, my children struggle leaving my side because this is not a place they we have consistently gone for fear of contracting infections that would put Gabriel at risk. My children have been forced to become older in years because of this journey. I do see so many moments where my children are children. However, there are many moments that my children seem older than they are. Simone to hugging both of her siblings saying “it is okay…don’t be scared.” My daughter is four-years old. She has so much strength and caring that I feel two competing emotions of both sadness and proudness. Yasmine, at 2.5, asks us many times “He okay…mommy?” I feel sad because I cannot tell them and don’t want to tell them the implications of cancer. Gabriel who is brave, but also so scared. My son has anxiety that many times regresses to the little boy I knew at 3 when he was diagnosed. How do I expect any more than this when for more then half his life he has been fighting cancer? Being a parent in this journey has you question so many different aspects on what is right for the present and the implications for the future. I don’t know if I am always making the right choices, but I pray and seek God to help me direct this path for my children.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">As our journey continues our life has gone back to isolation most days. We don’t leave the house if Gabriel is neutropenic as the risks are too great. This change also involves isolation for my girls too. I try to do the best I can to find activities for them to do at home and outside. The outdoors has been a great place for our family as it decreases risk for infections. Mike and I spend a lot of time hand washing when we go into the community. We still have to attend to errands in the community, so we are very aware of who is around us that may be sick. To always be so conscious becomes very tiresome. However, we would do anything to keep our son safe.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We spend a lot of time at the hospital where my son receives chemo in many ways. He receives chemo in his port-a-cathe, leg injections and orally. I never imagined having to give my child an option of what he would prefer as a “poke” (needle). A conversation may look like this “Sweetheart, do you want to have a finger poke or a poke in your port-a-cathe today?” Did I ever fathom that one of the questions to encourage age appropriate decisions would be concerning a place for a needle? I don’t believe that this procedure is a decision that any child should ever after to make. However, in terms of allowing kids to feel a sense of control when so much has been taken is important. Providing Gabriel this option allows for him to feel a little bit of power over his life. Most days he does not have a choice has he has to receive chemo through his port, but on days where it is to check his counts...he gets to choose.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">This life is also very unpredictable. We could be having a great day at home. Gabriel smiling and running around, but instantly things can change. Gabriel has spiked a fever when there have been no symptoms. We have to rush to emergency where he is placed in a isolation room away from all other infections that run rampant in emerge. As a result, we are admitted as inpatients for a minimum of 4 days. We have spent a lot of time as inpatients during this journey. Our plans have changed quickly many times since the start of this journey. Our family has often felt a sense of disappointment when planned family and friend events have to be cancelled. Our plans for scheduling normal family activities are always based around Gabriel’s immune system. Our family has gone through scary infections since Gabriel’s diagnosis from the swine flu to two bouts of pneumonia, and many other unexplained infections that resulted in fevers. God has protected Gabriel throughout all of these serious infections. There are nights when Gabriel has no neutrophils that we are up checking for fevers. As he has become older he has been able to articulate how he is feeling, which is helpful for us. Mike and I continue to have many sleepless nights to taking care of health and emotional needs of our children.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">As for the near and long-term future of this journey…my son has to undergo full body radiation that will kill all remaining cancer. In addition, he will receive such a high dose of chemo that it will kill his own bone marrow so that he can then undergo a transplant. As I sit writing this portion of my post I am listening to a song called “aftermath” by Hillsong. I am trying to listen to the words so that as fear and deep pain from knowing all this information I do not feel weak. I am trying to remember, “God is with me to light the way.” I cry as I think of the near future and what my son has to endure. I have not told him yet as his anxiety would overtake him with the unknown. There are many risks to a transplant from future diseases and to being life threatening. Once his transplant is complete Gabriel is at a very high risk of contracting infections as his new bone marrow begins to establish itself. Gabriel will be in complete isolation. He will not be able to see his sisters for at least 4-6 weeks. The most concerning period of time is the first 100 days post-transplant. Mike and I are the only ones that can go to be with him. As a result, we will only be able to go back and forth from the hospital to Ronald McDonald house for 4-6 weeks. I don't know how to tell my children that we cannot be together as a family until Gabriel recovers. Skype will work for a short period of time, but sometimes it may be too difficult to not have my children to reach out and hug each other. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Until the time of transplant Gabriel continues to receive chemotherapy at very high dosages until the required testing on the donors is complete. We have not received a date for transplant, but know it will be happening before the summer. We are currently planning for a two-month stay in Toronto. I no longer work as I have taken a leave of absence from work. My husband is working to get prepared for taking 4 weeks off to be with us in Toronto. This change will be a financial burden, but we finding strength in many ways…especially through God.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Thank you for reading my post today! I hope that you are reminded everyday of the blessings in your life. There is always much to feel blessed about. I see this in my children and those around me. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Thank you to everyone who has blessed my family through messages, financially, food, and providing an ear to listen.</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com2tag:blogger.com,1999:blog-6105273762108316971.post-14364931347563623012012-03-04T21:58:00.004-05:002012-03-20T09:59:51.609-04:00In my Greatest Fear Intercessory Prayer has Helped<div dir="ltr" style="text-align: left;" trbidi="on"><o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">There is a constant reminder to stay close to Jesus as He is the only one that will carry me through this storm. There are times I grow weak and put my time with our Heavenly Father on the shelf. I am reminded how this can only foster spiritual weakness. As a result, I become fearful, worried and alone. My fear is decreased when I don’t foster this relationship with God. This scare of watching my son hooked to heart monitors and oxygen for two days had me fearing the worse at 3 a.m. I realized how alone I felt because I did not put my fear in the right place. I have lived two opposing lives where I have trusted God and have not trusted God. In the past, I must say with all honesty that living without God was the most difficult part of my life. As I face the scariest journey that no mother and no parent should ever have to face I am left with the same decision. Do I put all my faith and trust in God so that my burden is eased? I have free-will to choose. There are consequences of one choice and future blessings of another choice. However, in this life and this journey I grow weary and tired. It is then that I stumble. I truly want to live a faith-filled life that glorifies my maker, my deliverer, and my healer. I question this journey to no end…my sister-in-law Carolyn put it so clearly in how I feel “when will this crap end?” I have often thought those same words, especially almost 3.5 years into this journey with my son, and many other times in my life. I know God will use my life and this journey as means to glorify Him. However, it is during this journey that I have to force myself to remember that this too is only for a season. I think often of how Job in the bible suffered so greatly. We know at the end of Job was blessed, but he did not do this for the blessings because this was unknown to him at the time. He did it because he wanted to be obedient to God. Sometimes this is the hardest part in life. I don’t know what God has for my life. Do I want to suffer? I do not. I am sure Job did not want to suffer, and lose all that he had. Job continued to love and honour God through all of his suffering. I hope that I can exemplify the same faithfulness that Job did in the scriptures.<o:p></o:p></span> <br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I shared of my weakness above. I know this journey will cause me to feel sadness and fear. It is those times I have come to trust intercessory prayer. My dad shared with me that a mother’s greatest protection and love for their child sometimes makes us struggle with prayer. My dad reminded me that I do need to continue to lean on people during times that it is hard for me to pray.<o:p></o:p></span></div><span style="font-family: Calibri;">1 Timothy 2:1 <o:p></o:p></span><br />
<span style="font-family: Calibri;">First of all, then, I urge that supplications, prayers, intercessions, and thanksgivings be made for all people, <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Matthew 18:19-20 </span><br />
<span style="font-family: Calibri;">Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.” <o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Romans 8:26 </span><br />
<span style="font-family: Calibri;">Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.<o:p></o:p></span></div><br />
<span style="font-family: Calibri;">I continue to seek, ask for support and thank all that have continued to follow our journey. It humbles me so much knowing you are all there for us even if it is through your posts. They help lift my spirit.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Updates:<o:p></o:p></span></div><span style="font-family: Calibri;">Gabriel was recently admitted to the hospital with pneumonia. His heart rate was extremely high as a result of him struggling to breath that was complicated by three facets. Asthma, pneumonia and low hemoglobin. All three having life threatening possibilities. Through all your prayers Gabriel has quickly recovered only after two days. The doctors are extremely happy with his progression. I shared in the beginning how fearful I felt at 3 a.m. During this time, it was not nurses running into see my son, but two doctors. One Doctor does not typically come to see patients in the middle of the night, but to have two arrive and not nurses scared me beyond anything I have experienced thus far. I have had a few scares, but not to this extent. At 3 a.m., I realized that I just had a small glimpse of what potentially could occur post-transplant. I need to be prepared both spiritually, mentally, and physically. My son is doing great now! He actually completed a whole Lego set of a rocket, space station and multiple other pieces in this set. Thank you Auntie Jen for buying this for him! He loves Lego, and to see him maintain focus for hours to complete this set amazed his dad and I. We are so proud of him. Thank you Uncle Geoff for coming to visit and help and thank you to Aunt Jen taking me on some retail therapy and spoiling my kids. You made them all so happy.</span><br />
<br />
<span style="font-family: Calibri;">As for treatment, Gabriel continues on his protocol today because his neutrophils came back so quickly. He completed 8 hours of hydration to equip his body for a one hour chemo treatment today. He returns on Tuesday for an LP and more chemotherapy. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">The <b>BIGGEST</b> news at this point is the finding of preliminary donor matches. Sick Kids has informed our Oncologist they have found a few matches (uncertain of numbers), but we will have more information in two weeks about these donors. They have to continue with further testing to determine the best and closest ten out of ten match for Gabriel. There are many variables to pick a donor, but they have found preliminary donors. This is great news. I, of course, feel very scared about this part of treatment as it involves the unknown for Gabriel. There is much to this process that I will go into further detail in my next post. This treatment also entails much planning for my family as I reconfigure our lives for an average of two months or more in Toronto. Gabriel will be in isolation for 4-6 weeks, which means he cannot see his sisters. He will only be able to see his dad and I. This change will be a very difficult process, and at this point we are in the planning stages of making all of this work for our family. The biggest portion of planning is reducing infection risks to our girls while staying at Ronald McDonald house when we come to visit and keeping Gabriel safe. Mike will be taking time off from work, and anticipate this will be one month or more if we can financially afford for him to stay with us. In addition, I just took a leave of absence from work to begin planning and being their for my children 100%. It was a difficult decision as I love helping my clients, but after realizing that I cannot provide a predictable and professional practice for my clients I had to make this difficult decision until I feel my son has recovered from his transplant. I will continue to post and let everyone know when we anticipate the date of Gabriel’s transplant.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><b>I am thankful for:</b></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">1. To all those that pray and support us through many ways... food, prayers, thoughts, comments, private messages on facebook/blog, and financially.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">2. Thank you for God's hand upon my son when he was admitted to hospital as I have seen his mercy and power on Gabriel's life. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">3. For our amazing families who strive to do whatever they can for us. We love you all Bender and Smith family.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">4. Thank you to people who commit their time to help my son whether it is private soccer lessons (Bill Johnson), piano lessons at our house (Rachel Van den Heuvel), and Gabriel's Northdale school teacher (Mrs. Hewitt), and his homeschool teacher (Miss Taylor), and to his grade one/two class who bring him such great joy when they skype in.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">5. Thank you to Jacob Story for your continued support. Jessica and Bill we are glad to have you as a part of our lives and this journey. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">6. Thank you to IDTTYS for donating a laptop that we can take to the hospital to skype and to be able to keep everyone posted about our journey. Your graciousnes across borders will always be remembered. Please check their website out. <a href="http://idttys.org/">http://idttys.org/</a></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><b>Please pray for the following:<o:p></o:p></b></span></div><span style="font-family: Calibri;">1.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Successful Bone Marrow Transplant and Recovery in Post-transplant<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">2.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">His new Bone Marrow recovers quickly<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">3.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Protection from Infections while his immune system is completely compromised post-transplant<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">4.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Protection over my girls so they remain infection free<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">5.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Protection over Grandpa and Grandma Bender and Grandpa and Grandma Smith so they remain </span><br />
<span style="font-family: Calibri;"> infection free while they care for our girls at Ronald McDonald House.<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">6.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">That we will be financially okay during this journey<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">7.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Peace and strength for Mike and I<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">8.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Please pray that his organs will be protected from chemo and radiation<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">9.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">We are told that Gabriel will be 99% percent infertile after he receives full body radiation in </span><br />
<span style="font-family: Calibri;"> preparation for this transplant… I would like to begin praying that through God’s healing power </span><br />
<span style="font-family: Calibri;"> that this is not true for my son. <o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">10.</span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: Calibri;">Gabriel’s body does not reject this transplant and he does not get any diseases or future diseases </span><br />
<span style="font-family: Calibri;">from this transplant.<o:p></o:p></span></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-46823283311915885462012-02-06T22:26:00.005-05:002012-02-07T10:18:00.611-05:00Balance is the Midst of a Storm<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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</style> <span style="font-family: "Bangla MN"; font-size: 12pt;">Most days our life exists of taking care of our children as all families do each day. However, our family has the additional journey of cancer that affects “850 children per year in Canada” (<a href="http://www.cmaj.ca/content/180/4/422.full">http://www.cmaj.ca/content/180/4/422.full</a>). This statistic is hard to fathom, but researchers indicate that children still are affected less compared to adults. No child should suffer this disease and no family should suffer all the dimensions of this disease. The question of balance does come to my mind a lot as I think of the many roles I play each day in my life as a wife, mother, my family roles (sister/in-law, daughter/in-law), friend, and social worker. I want to know that I have done the best that I can in every role in my life, but this disease has caused me to realize that my expectations of balance has to be lowered in order that I show my children that life is what you make it. I know with this journey that it is hard to maintain consistency in all my roles, and I have learned that all that matters is I do the best that I can in my circumstances. We have choices to be positive, happy and to see our blessings no matter what our journey may be. </span><span style="font-family: "Bangla MN";"></span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">Balance is a thought that all parents at some point during the life of parenthood question. These areas include: balancing work versus family, independent needs versus needs as a couple, time spent with your children versus time as a couple, time spent with immediate families versus spending time with your own family, etc.</span><span style="font-family: "Times New Roman"; font-size: 12pt;">…</span><span style="font-family: "Bangla MN"; font-size: 12pt;"> I am sure there are so many to add to this list that most families have to consider. At this stage of my life the most significant balancing act that I face is the balance between feelings of overwhelmed, fear, and sadness versus creating happy, cherished and blessed moments. My balance at the end of the day is to have more positive memories than the negative moments that are inevitable in this journey. How can I create life of blessings in my family that surpasses what cancer does to a family?</span><span style="font-family: "Bangla MN";"></span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">I have been asked how do I walk this journey everyday. I don’t walk this journey everyday on my own. I walk it knowing that my Father in heaven whom loves my family is holding us close wanting to carry my fears, sadness and worry in his arms. </span><span style="font-family: "Bangla MN";"> </span><br />
<br />
<b><span style="font-family: "Bangla MN"; font-size: 13.5pt;">Psalms 34:17-19 states</span></b><b><span style="font-family: "Bangla MN"; font-size: 12pt;"> “</span></b><span style="font-family: "Bangla MN"; font-size: 12pt;">The LORD hears his people when they call to him for help. He rescues them from all their troubles. The LORD is close to the brokenhearted; he rescues those who are crushed in spirit. The righteous face many troubles, but the LORD rescues them from each and every one.” </span><br />
<br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">I do not understand the “why” of cancer in children and have cried and have been angry at God many times during this journey when I have heard and seen my son cry out in pain. BUT, I do know that in this journey only good will come one day that will glorify God. I trust in God that one-day we will look back knowing that I believed, was faithful, and see all that God is doing in my life and my family’s life. I don’t know what is to come for the future, but I know one thing for sure that I cannot walk this journey alone. I am only strong because my faith in God causes me to be strong and peaceful. All credit goes to our heavenly Father above. I do not have the words to describe the peace and strength that has been provided when I am obedient to his word, faithful and seek him in all that I do. I certainly have my days when this load gets heavy and I fail, but I am soon reminded that I don’t have to carry this load. I am human with many weaknesses and faults that only through God can I surpass these frailties. </span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">There are days that I have to make hard decisions and it hurts every part of my being. Today, my youngest daughter woke to the flu. My son also had to go to the hospital to receive an injection of chemo in his leg. This aspect of his protocol is the worse part for my son. There have been too many days in the past that I had to be away from my daughters when they were sick so I could be with my son at the hospital. My son places all his trust and strength in me, and when I am not there he cries in fear and more pain that my heart breaks. I made the decision today with the knowledge that this journey is long that I need to encourage my son to lean on his daddy as he does with me. Gabriel’s dad had to be the one to attend today and without me. I wanted to stay home to take care of my daughter. I wish that I could take care of Gabriel, Simone and Yasmine all at the same time. I had to make a hard decision that hurt so much today. Cancer ravages so much in my family’s life that leaves me feeling tired and always searching God. I know it is good to search, but it is in those times that this weight of this journey surfaces and it takes all my strength to sit and pray. There are days I don’t want to pray because I am certain it is because anger overtakes. However, I still subscribe to what I shared above even in all my weaknesses. Some days it is really hard, and I sit in the quietness in my room waiting on God.</span><span style="font-family: "Bangla MN";"></span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">My son left today armed with a cozy shirt of mine that I just wore, his dad’s iPad to Skype me as he was getting his injection, and all my love in the “huggie wuggies” (my son’s words) I gave him before he left. The hardest part was when I could not give him “huggie wuggies” as I heard and watched as he received his injection. I know video skyping him today was helpful, but was not the same for him or for myself. I am glad at least we were able to do that. I was blessed to be able to snuggle with my youngest daughter when she was sick, and did the best I could to help my son. All I can do is try my best, love, listen, encourage, teach, and support my children the best way I know how during and after this journey ends. </span><br />
<br />
<span style="font-family: "Bangla MN";">UPDATE</span><br />
<br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">Gabriel has completed two phases of his protocol. He has just completed the first week of the next phase of his protocol, which will last 41 days. The first month we will be in outpatient every other day. Gabriel’s chemo is given through his port-a-cathe, and he will have to undergo 10 more leg injections. Every Friday we will be at the hospital for almost 12 hours, so he can receive six different types of chemo and one steroid. In addition, this chemo will bottom out his immune system to defeat the cancer and to make sure it does not return. Gabriel will undergo radiation later in his protocol and at the end of the 41-day cycle may be when his transplant may occur. At this stage, we have not heard anything about finding a donor. They begin a computer generated search Locally, Provincially, Nationally, and then Internationally. I am certain we would have heard if there was a match by now if it was Provincially and, even Nationally. There are many parts of this protocol that are uncertain based upon many different outcomes and facets for my son. We just take it day-by-day, and sometimes week-by-week. </span><br />
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<span style="font-family: "Bangla MN"; font-size: 12pt;">THANKFUL</span><span style="font-family: "Times New Roman"; font-size: 12pt;">…</span><br />
<br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">I am so thankful to Jacob’s Story (<a href="http://www.jacobsstory.ca/">www.jacobsstory.ca</a>) for taking the lead to support us through fundraisers and by organizing a food schedule through food tidings. I am so thankful and humbled by the gracious support of everyone who has made or will be making us a meal. Coming home to a meal after a long day makes me feel blessed and honoured that everyone is doing this for our family. </span><span style="font-family: "Bangla MN";"></span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">We want to say thank you to all those that have supported us with gift cards to help us financially. In November, we thought everything was going well with our son and decided to become a part of an opportunity to partner and purchase a commercial property for our businesses rather then throwing money away in two rentals. One week after we gained ownership of this property we were given the news that our son’s cancer returned. I was working 15 hours a week, and my husband was working a full week. Now, we have the responsibility of 1.5 properties. Now, I work 6 hours a week and my husband takes one day off at work and is home early other days to help with the hospital schedule. It was a sad realization that our life changed in a matter of moments in so many ways that we had to determine a plan. This small summary of our circumstances is what caused me to reach out. Jacob Story responded and will be helping ease some of this burden through fundraisers and the continued schedule of meals. I just wanted to express my gratitude to everyone. When Gabriel was diagnosed in 2009, we did not reach out. We isolated ourselves, and it made this journey hard. This time</span><span style="font-family: "Times New Roman"; font-size: 12pt;">…</span><span style="font-family: "Bangla MN"; font-size: 12pt;">I realized I could not do this again in isolation. It is the hardest thing for me to do was to ask for help. Thank you so much to everyone for responding.</span><span style="font-family: "Bangla MN";"></span><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">Thank you to all my friends and family that have provided support through gift cards, cards and gifts to bring us a smile. I hope you all know how grateful I am for your generosity. I hope one day that I can give as many people that I see a hug and a personal thank you for your amazing support. </span><br />
<br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">Thank you to Kyra, my best friend, for coming to spend the day with me at the hospital. Your act of kindness touched me as you unselfishly gave up a day of work to come help me and to make my children smile. Thank you to my family for being here to help and support us. We love seeing you at home and at the hospital, and this time is precious to us. </span><span style="font-family: "Bangla MN";"></span><br />
<br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">PLEASE PRAY FOR THE FOLLOWING:</span><span style="font-family: "Bangla MN";"></span><br />
<div style="margin-left: 64.0pt; mso-list: l0 level1 lfo1; text-indent: -46.0pt;"><span style="font-family: "Bangla MN"; font-size: 12pt;">1.<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Bangla MN"; font-size: 12pt;">To help Mike and I grow together and not let this journey cause tension. </span></div><div style="margin-left: 64.0pt; mso-list: l0 level1 lfo1; text-indent: -46.0pt;"><span style="font-family: "Bangla MN"; font-size: 12pt;">2.<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Bangla MN"; font-size: 12pt;">Guidance and wisdom when the time comes when Mike and I have to make a decision concerning chemo or transplant. </span></div><div style="margin-left: 18.0pt;"><span style="font-family: "Bangla MN"; font-size: 12pt;">3. Health of our daughters</span></div><div style="text-indent: 18.0pt;"><span style="font-family: "Bangla MN"; font-size: 12pt;">4. Healing for Gabriel </span><span style="font-family: "Bangla MN";"></span></div><br />
<span style="font-family: "Bangla MN"; font-size: 12pt;">We love you all, and thank you from the depths of my heart.</span><span style="font-family: "Bangla MN";"></span><br />
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</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-27688005998007773322012-01-23T11:18:00.004-05:002012-01-23T11:21:52.732-05:00<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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<div class="MsoNormal" style="background-color: black; color: #f3f3f3;"><b style="mso-bidi-font-weight: normal;"><u><span style="font-size: 14pt;">Bravery</span></u></b></div><div class="MsoNormal" style="background-color: black; color: #f3f3f3;"><br />
</div><div class="MsoNormal" style="background-color: black; color: #f3f3f3;">My son is often defined as a boy with great strength and bravery. My son has recently lost his hair, which is the everyday reminder of this painful journey. When my son had hair it helped me to block the thoughts and images that this journey brings to our family. However, his hair is now gone, which I will be reminded every time I look at my precious son of what cancer has done to my family. </div><div class="MsoNormal" style="background-color: black; color: #f3f3f3;"><br />
</div><div class="MsoNormal" style="background-color: black; color: #f3f3f3;">Bravery is defined as “having or displaying courage, resolution, or daring; not cowardly or timid,” and so it this definition that describes the essence of my son’s response to cancer. He may not understand the depth of what cancer is or can cause, but he has chosen to respond in a way that is beyond his own understanding. My son undertakes this journey with grace, strength and perseverance. My son does not scream, my son does not shake, my son does not hide, my son just looks at me and grips my hands and says, “mommy, I am scared, but I know this will be done soon.” He faces this pain with the only word that summarizes all that he has had to become-brave. It is not the fact that he has cancer that makes my son brave. It is his innate nature of how he responds to this terrible adversity. He is admirable at a very young age, and he is my greatest hero. I may experience this pain as a mom, which is a pain unlike any pain in this world. However, when I look at my son he reminds me that as a family united we can conquer this journey together. He has such beauty that I feel blessed to be his mom. He is my son, and I hope he comes to know one day that he is growing to be like Jesus at such an early age. I want to end with a poem that I have placed on our shirts for the Relay for Life as it is a good reminder for myself and to all those that read my blog.</div><div class="MsoNormal" style="background-color: black; color: #f3f3f3;"><br />
</div><div style="background-color: black; color: #f3f3f3;"><i><b style="mso-bidi-font-weight: normal;"><u><span style="font-family: Cambria; font-size: 12pt;">What Cancer Can’t Do</span></u></b></i><b style="mso-bidi-font-weight: normal;"><u><span style="font-family: Cambria; font-size: 12pt;"></span></u></b></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">Cancer is so limited... </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot cripple love. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot shatter hope. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot corrode faith. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot eat away peace.</span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot destroy confidence. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot kill friendship.</span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot shut out memories. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot silence courage. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot invade the soul. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot reduce eternal life.</span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot quench the spirit. </span></div><div style="background-color: black; color: #f3f3f3;"><span style="font-family: Cambria; font-size: 12pt;">It cannot lesson the power of the resurrection</span></div><div style="background-color: black; color: #f3f3f3;"><br />
</div><div align="center" style="background-color: black; color: #f3f3f3; text-align: center;"><span style="font-family: Cambria; font-size: 12pt;">CANCER IS JUST A WORD….NOT A SENTENCE.</span></div><div style="background-color: black; color: #f3f3f3;"><br />
</div><div class="verse" style="background-color: black; color: #f3f3f3;"><span style="font-size: large;">Be strong and courageous. Do not fear or be in dread of them, for it is the <span class="sc">Lord</span> your God who goes with you. He will not leave you or forsake you.” Deuteronomy 31:6</span></div><div align="center" style="background-color: black; color: #f3f3f3; text-align: center;"><br />
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</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com3tag:blogger.com,1999:blog-6105273762108316971.post-57363372981719710932012-01-02T22:32:00.001-05:002012-01-10T00:52:02.222-05:00On my Knees as I Suffer<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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<div class="MsoNormal"><b style="mso-bidi-font-weight: normal;"><u>Obedience and Self-Control</u></b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">It seems interesting to post a blog about two areas of such great difficulty for most of the human race. Obedience and self-control was my devotional for today and one that I have to learn over and over again. We all face what seems like the impossible at some point in our lives and for some many times over. Everyone has various areas in life where obedience and self-control should be a framework to live by, but often are two words that are placed on the shelf and forgotten. Obedience is a strong word that is often misused for terms such as control and dominance. However, when placed in proper perspective and appropriate relational roles it has a profound effect. As a child of God, I am called to obedience to His word and to have self-control. I must say that many times in my life I have failed a lot in these two areas. Lately, my self-control has not been prevalent when I say such statements as “I hate life,” easily triggered emotionally when I feel anger and sadness. I know some may read this summary assuming it is a fair way to experience a life when you are a parent to a child who suffers with cancer. Yet, I am called to exemplify Jesus who died on the cross for my sins. Jesus was perfect in every way, and though Satan tempted him He still prevailed. At this stage of my life I am not prevailing in much as I have let negativity, insecurity about the future, and peace be robbed from my home. The first time Gabriel was diagnosed was shocking. I would define the first year as responding in a robotic manner during treatment days. Gabriel’s relapse feels as though life is overwhelming, unfair, and that there is no end in sight. It is taking everything in me to wake up, be mentally healthy for my children, to hold on to my marriage when some days as a result of Gabriel’s relapse we are struggling. Most days I struggle with finding hope as fear overtakes my entire being. I do not want to lose my son. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">BUT, two evenings ago in the shower as I cried out in desperation to Jesus as this fear overwhelmed myself and saw that my marriage was suffering…. An image of Jesus crying out to our Heavenly Father saying “why have your forsaken me” as He was left to die on the cross came to me vividly. I was reminded that Jesus died on the cross for my sins. Did He do this in vain? In the shower, I came to realize my faith was being robbed and that I was leaning on only my human strength, which has no power when you are a parent to a child with cancer. Furthermore, our human strength tends not to have any great strength in the matter of human troubles. I was no longer trusting in God. I was not being “obedient” and had no self-control concerning my thoughts about the future and about my marriage. I was watching things crumbling down around me. These last two weeks have been the most difficult pain I have experienced. To have only fear and no hope overtake oneself is something that no parent should ever have to experience about their child and their family. I was not going to let the cross be in vain. I decided in the shower that I would persevere through what I know and can trust, which is only through the Word of God. I am going to be obedient to God’s word and trust Him. Proverbs 4:20-22 says “My son give attention to my words; incline your ears to my sayings; do not let them depart from our eyes; keep them in the midst of your heart; for they are life to those who find them, and health to all their flesh.” I believe that God will one day use this pain to His glory. The word of God states in Philippians 2:13 that “For it is God which worketh in you both to will and to do of his good pleasure.” I don’t want to go through this pain, and no parent should. Nevertheless, I have to trust God has a purpose and one day He will be glorified in all His goodness. My strength in this journey comes from one place and only one place-to trust, to be obedient to God through prayer and reading the bible, and to commit to control my negative thoughts that this journey creates. I pray this scripture from Isaiah 53:5 “he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we [Gabriel is] are healed. This scripture is my prayer. I hope you too will pray this for my son. I cannot say that I won’t have days where I feel frustrated, sad, suffer, and the many emotions that this journey brings, but I will make one powerful change. I will not bear this pain on my own, as I know my Father in Heaven hears this pain. I will take it to Him and pass this pain to him. “The Lord is near the brokenhearted” (Psalm 34:18).</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I don’t have the answer to the question why a loving God allows us to suffer, but I do know that suffering comes and is a part of the human condition. We have all suffered, are suffering, or will suffer. Life does involve joy and sorrow, comfort and hardship. I may not know how to solve the mystery of suffering in this life. I have come to learn that as I consider the many dimensions of this pain that I have come to understand myself in deeper ways, have learned to talk with God about my feelings, hurts, and my relationship with God has deepened. I don’t want to suffer, especially with one of the greatest suffering one could imagine. To suffer as a parent over your own child is one that should never happen. Scripture instructs us to come to God “casting all your care upon him; for he careth for you (1 Peter 5:7). God accepts all our suffering without conditions and takes ownership for this pain we entrust to Him. That night in the shower I reached the bottom and realized I was helpless without Him. I surrendered to God in my broken state as I looked around my home that once gained back peace this past year, but was now on the verge of being torn apart. My home is to be a place of peace and one where God is a part of our walk, even when we suffer. I want this for Mike, Gabriel, Simone, Yasmine and myself. The only way to be in this world is to walk with the Lord. The "peace" you receive when you suffer is indescribable when you have the Lord in your life.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b style="mso-bidi-font-weight: normal;"><u>Update about Treatment</u></b></div><div class="MsoNormal"><b style="mso-bidi-font-weight: normal;"><u><span style="text-decoration: none;"><br />
</span></u></b></div><div class="MsoNormal">We recently found out a few days ago that Simone and Yasmine was not a match for Gabriel’s bone marrow. Mike and I are partial matches, and there is new research developed concerning parents being bone marrow candidates with their children. The question that comes to my mind is that I don’t know whether I am willing to risk my son’s life based upon new research. Alternatively, our Oncologist, through e-mail over the holiday season indicated that we might use Simone’s stem cells that we banked when I gave birth to her. If I was to offer any recommendation medically to all those reading this blog I would highly recommend banking stems cells from the umbilical cord as you never know what the future holds. At this stage, Gabriel begins intensive chemo Tuesday, January 3<sup>rd</sup> (tomorrow) and is admitted to London hospital for five days. Mike and I tried to read his protocol, but were very different to his previous protocol. In addition, this protocol has never been used at London outpatient, which means Sick Kids and London speak regularly about this chemo regiment. Gabriel receives various chemos over a course of five days the first week. We are then home the following week, and then admitted again for another five days. A this point, it appears of what we can read of the protocol we will be admitted two weeks each month as inpatients for a period of three months. The protocol for treatment will be discussed tomorrow. There is still discussions occurring about Gabriel undergoing a bone marrow transplant, but at this time we are uncertain. If Gabriel does undergo a transplant he will still receive chemo and radiation, but for a shorter duration in preparation for the transplant. In addition, Gabriel will have to receive entire body radiation prior to the bone marrow transplant, which we were advised that he would be considered infertile. This risk and many others are apart of this process whether it is entirely chemo or transplant. The chemo/radiation protocol is two years of treatment. We are still in the midst of discussing a transplant because it holds the highest rate of cure. These details are hard to share, and are only the superficial details. These details don’t tell the entire story of treatment. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Parents who have travelled a similar journey with their child can only understand this story. Mike and I never expect anyone that does not share similar circumstances to understand or have the right words to share. We just appreciate and love that you want to listen, hug and support us however we need it without judgment or expectations. We thank you that you spend time reading this blog, and want to help however you can. We truly thank you with all sincerity for your words of encouragement, reading this blog, and anything you do to help. We love you all!</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com7tag:blogger.com,1999:blog-6105273762108316971.post-12691153047428888112011-12-22T23:09:00.000-05:002011-12-22T23:09:29.614-05:00I Keep Trying to Look Up<div dir="ltr" style="text-align: left;" trbidi="on"> <style>
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</div>I never thought that as 2012 approaches that I would have to re-experience the pain and fear that coincides with this journey.<span style="mso-spacerun: yes;"> </span>This past year we felt blessed as Gabriel was beginning to live the “normal” life of a little boy.<span style="mso-spacerun: yes;"> </span>He was playing soccer, swimming, playing with friends, and school. He was full of life.<span style="mso-spacerun: yes;"> </span>He smiled.<span style="mso-spacerun: yes;"> </span>He played. He was living.<span style="mso-spacerun: yes;"> </span>Now…<span style="mso-spacerun: yes;"> </span>life feels unfair, as my son’s life is ripped apart.<span style="mso-spacerun: yes;"> </span>He no longer gets to be a little boy.<span style="mso-spacerun: yes;"> </span>He has to understand this complex journey with a mind of a child, but with the strength that most adults cannot conceive.<span style="mso-spacerun: yes;"> </span>I cannot conceive this strength and bravery that one must have to conquer cancer.<span style="mso-spacerun: yes;"> </span>How do I help my son be happy and feel normal during this adversity? How do I be a mom to all three of my children providing a balanced amount of time to each child so they all can grow with greatness, love, and a beautiful spirit during a journey with cancer? <span style="mso-spacerun: yes;"></span> <div class="MsoNormal"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">I am reminded that my answers can only come from the one above-our Father in Heaven.<span style="mso-spacerun: yes;"> </span>My greatest strength has been my faith in God.<span style="mso-spacerun: yes;"> </span>This journey tests my faith everyday, and some days I fail.<span style="mso-spacerun: yes;"> </span>I am reminded during this time when fear and worry overtake me that I must trust the one whom carves my footpath.<span style="mso-spacerun: yes;"> </span><b><span style="mso-bidi-font-family: Verdana;">Romans 8:6</span></b><span style="mso-bidi-font-family: Verdana;"> states, “<span style="mso-bidi-font-style: italic;">For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace.” I need peace at this time so that I can be a mom that encourages, listens, and teaches what is honorable and glorifies our Heavenly Father.<span style="mso-spacerun: yes;"> </span>I want to dream great things for my children.<span style="mso-spacerun: yes;"> </span>This life causes one to live in the moment.<span style="mso-spacerun: yes;"> </span>I don’t want to always live in the moment. <span style="mso-spacerun: yes;"> </span>I want to dream big dreams again for my children. My dreams sometimes feel like nightmares.<span style="mso-spacerun: yes;"> </span></span></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">I need to keep looking up.<span style="mso-spacerun: yes;"> </span>It is up that reminds me there is life when we pray, read the word, and look for the blessings amongst the pain.<span style="mso-spacerun: yes;"> </span>I believe there are blessings.<span style="mso-spacerun: yes;"> </span>I just feel tired of this pain.<span style="mso-spacerun: yes;"> </span>I want this pain to end.<span style="mso-spacerun: yes;"> </span>I want to know that I will be able to hold my son in my arms until I go to be with our Heavenly Father.<span style="mso-spacerun: yes;"> </span>I don’t want to fear the reverse.<span style="mso-spacerun: yes;"> </span>I need to have Faith amongst the unknown.<span style="mso-spacerun: yes;"> </span>The greatest tool that overcomes all is faith in God.<span style="mso-spacerun: yes;"> </span></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">Dear Jesus,</span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">I pray for the strength that only comes from you.<span style="mso-spacerun: yes;"> </span>I pray that I exemplify you and your humble spirit.<span style="mso-spacerun: yes;"> </span>I pray that I can hold my son close for years to come until I am old and come to live with you.<span style="mso-spacerun: yes;"> </span>I pray that the doctors are wrong when they tell me that he will never have children of his own.<span style="mso-spacerun: yes;"> </span>In spite of all the pain that goes with this journey I would never change the gift that you have given me in Gabriel, Simone, and Yasmine.<span style="mso-spacerun: yes;"> </span>I pray, Dear Jesus, that Gabriel is given this same gift of the greatest gift in life of all-children.<span style="mso-spacerun: yes;"> </span>I pray that he is given freedom to live his life to the fullest without long-term harm to his body, mind or spirit.<span style="mso-spacerun: yes;"> </span>I pray that this journey will be used to glorify you and bring people to know you.<span style="mso-spacerun: yes;"> </span>I pray for healing.</span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;"><span style="mso-tab-count: 7;"> </span>Amen (Let is be So).</span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><u><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">First Week of Relapse</span></u></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">This journey has been a difficult time as I never fathomed I would hear the words “relapse.”<span style="mso-spacerun: yes;"> </span>However, I have and I need to regain my composure to begin treatment in a different and renewed way than previous years.<span style="mso-spacerun: yes;"> </span>I am not sure what this will look like, but I know it has to be different. </span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">A summary thus far during our first week of relapse Gabriel has undergone two LP’s to decrease the leukemia blasts in his central nervous system (CNS).<span style="mso-spacerun: yes;"> </span>This treatment has worked, and has reduced the blasts.<span style="mso-spacerun: yes;"> </span>He also received a second round of a triple dose of chemotherapy where three different types of chemotherapy were injected into his CNS.<span style="mso-spacerun: yes;"> </span>He had his bone marrow tested to determine whether the cancer spread.<span style="mso-spacerun: yes;"> </span>It has not, which is great news.<span style="mso-spacerun: yes;"> </span>However, our treatment course is based upon two possible paths because he does have cancer in his CNS.<span style="mso-spacerun: yes;"> </span>One path is chemotherapy for two years based upon a German protocol that is new to our Outpatient clinic, but known for better results for a CNS relapse so close to completion.<span style="mso-spacerun: yes;"> </span>The second path is for a bone marrow transplant if Simone and Yasmine match Gabriel.<span style="mso-spacerun: yes;"> </span>The treatment path will be based upon Mike and I deciding upon the best for our son, which will take much research, questions to the transplant team and lots of prayer.<span style="mso-spacerun: yes;"> </span>We are advised that bone marrow transplant would be a more curable prognosis, but there is much risk.<span style="mso-spacerun: yes;"> </span>Please pray for Mike and I to have clarity, wisdom and to make the right decision.</span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: Verdana; mso-bidi-font-style: italic;">I will continue to post so that I can share our journey with you.<span style="mso-spacerun: yes;"> </span>I do appreciate that you all take some time to read my posts.<span style="mso-spacerun: yes;"> </span>It helps me, and I hope it helps you understand our journey too.</span><span style="font-family: Calibri; font-size: 10.0pt; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Verdana; mso-hansi-theme-font: major-latin;"></span></div><div class="MsoNormal"><br />
</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com1tag:blogger.com,1999:blog-6105273762108316971.post-65319216496597212542011-12-15T21:50:00.001-05:002011-12-15T22:00:21.125-05:00Waiting...<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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</div>I wait, and wait, and wait. This experience tends to be the very essence of this journey. Waiting for the blood results and bone marrow from the first test that identified leukemia, waiting to find out whether Gabriel was standard risk or high risk to discover he was considered high risk based upon cyber genetics testing, waiting to know whether he is in remission, waiting to know whether chemo is working, waiting for June 2<sup>nd</sup>, 2012 for the final day of treatment, waiting for five years to know that he is cured….but, now I wait…again… I wait in fear, I wait in sadness, I wait in anger, I wait in frustration, I wait to know whether cancer has spread to his bone marrow, I wait wondering if my girls are a match in case a transplant will occur, I wait as I also have to endure my girls being tested, I wait for FEAR of that word that is apart of this journey with cancer. I don’t want to fear losing my son. I did not carry Gabriel for nine months to give birth to him to see him in pain, to be reduced to what cancer does to a person, to not be a child living and enjoying life. My child suffers and I suffer having to watch without being able to carry him through this pain. When will you return Jesus so that you can take all this pain away? I wait…in pain, sadness, frustration, but I wait knowing this is not my home. However, it does not change the fact that this wait is hard when you have a child that suffers. I want to be reminded of your blessings upon my life, but I am filled with sadness and loneliness, as you feel so distant. So, I continue to wait for answers from doctors and I will continue to wait upon you Lord… <br />
<div class="MsoNormal"><br />
</div><div class="MsoNormal">I never intended for my post to be one of such difficulty. I had intended writing a post just after I uploaded an article from David. My blog was going to be one where I rejoiced in all the blessings that have been a part of our life over this past year. It was going to be a blog of great happiness from our Make a Wish trip, Camp Trillium and our 2<sup>nd</sup> annual Christmas cabin trip. I felt very thankful to our Heavenly Father for blessing us. However, all has completely changed in literally a matter of minutes. I am thankful for this past year, but as I sit here writing this post it feels like a distant memory of long ago. We went to Gabriel’s scheduled three month LP procedure that we have done with Gabriel many times before, and assumed all would be fine. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We received a call on Wednesday from our Oncologist, which is rare. Your gut sinks as you know when you receive a call from the Oncologist something is not right. I was in session with a client and my husband banged on my door. I knew instantly something was wrong. I went in the hallway away from my office. My husband stated in tears “Gabriel has cancer in his central nervous system.” I was instantly in shock. All I could say was “what, are you kidding.” I was in such a state of shock and disbelief that for a moment my mind wanted to believe this was a bad joke. I quickly realized that I had to end my session with my client, as we needed to see our Oncologist. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"> We were advised that his treatment protocol could not be determined at this time until a bone marrow test is completed. There are two options at this time for my son. The first option if the cancer has not spread to the bone marrow is back on intensive chemo and radiation to his head. The second option would be a bone marrow transplant if the cancer has been found in his marrow. I don’t like either option. When you are given options in best, better and ok, even though you don’t want any. We want the best, which is where the cancer has not spread to his bone marrow. Gabriel would require chemo and radiation, but no transplant. A bone marrow transplant is very risky and life threatening. Our lives are transferred to Toronto with Gabriel having no contact with anyone except for myself and his dad for almost three months or until his numbers increase. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So, again I wait… I wait for Tuesday to have his bone marrow tested, and Mike, myself, and my girls to have our blood drawn to determine whether we are a bone marrow match, I wait for Thursday to learn of the results. I wish I could end with the word “finally,” but I cannot. I will still have to endure, as the wait is not over… </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com8tag:blogger.com,1999:blog-6105273762108316971.post-22620759487901978812011-12-10T21:43:00.005-05:002011-12-10T21:51:57.901-05:00Article by David Haas about Physical Fitness Alleviating Cancer Symptoms<div dir="ltr" style="text-align: left;" trbidi="on"><style>
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<div style="color: white;"><span style="font-family: Verdana; font-size: 9pt;">Exercising has the potential to alleviate the some symptoms of cancer. Studies have shown that physical fitness can help patients that are undergoing treatments as well as assist those that are in remission. People battling all forms of cancer have shown some improvements with moderate exercise, whether it is breast cancer, <a href="http://www.mesothelioma.com/mesothelioma/">mesothelioma</a>, or prostate cancer.<br />
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Exercise is one of the most beneficial activities that cancer patients can do as long as it does not interfere with the doctor's recommended course of treatment. There is no certain type of exercise that cancer patients must do, so the basic premise to find some way to get active whether it is swimming, walking, jogging, or even Yoga. Exercises can be done for just 20-30 minutes sessions that occur 2-3 times per week to see results.<br />
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Here are some of the benefits of exercise for cancer patients<br />
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- Reduces the incidence of cancer<br />
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It has been reported that exercise can help reduce the likelihood of getting certain forms of cancer like breast cancer and colon cancer.<br />
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- Promotes muscle development<br />
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Exercise helps stabilize the body weight and promote muscle development, which is especially beneficial for those with cancer. Cancer treatments can make it difficult to maintain a healthy weight and muscle loss is quite common. Moderate exercise can help the body build muscle and stabilize throughout the treatments.<br />
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- Alleviates some symptoms<br />
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<a href="http://www.cbsnews.com/8301-504763_162-20089410-10391704.html">Exercise has been known to alleviate some symptoms of cancer as well as reduce some of the side effects of chemotherapy</a> and radiation treatments. Many cancer patients struggle with pain, fatigue, depression, and nausea, but many of these symptoms can improve just by doing moderate exercise a few times a week.<br />
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- Increases energy and vitality<br />
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Exercise has been proven to increase feelings of self-esteem and self-confidence because it releases endorphins into the brain. These endorphins make the body feel more energetic as well. Given that cancer patients generally feel lots fatigue, stress, and depression, exercise will provide lots of mental benefits that will help them cope.<br />
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Generally, most <a href="http://www.mesothelioma.com/treatment/doctors/">doctors</a> approve of exercise being used in <a href="http://www.cancer.gov/cancertopics/factsheet/prevention/physicalactivity">conjunction with the other prescribed cancer treatments</a> as long as they do not interfere with anything. Exercise has a lot of mental and physical benefits that help people across the board, whether they have cancer or not.<br />
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</div></div>Tina Smithhttp://www.blogger.com/profile/02593092646434420738noreply@blogger.com0