The Truth Within..

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.

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.

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.

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.   

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.  

One day, I was returning from a hike with my husband and our children.  It was then I realized I needed help.  I saw in my mind a horrific scene where my children were hit 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.   

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.

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.

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.   

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.  

Happy 9th Birthday to my Hero on the 1st Day of Childhood Cancer Awareness Month

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. 

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. 

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].

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. 

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)

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. 

 Check out the "8 brutal truths about childhood cancer" in the article below.

http://themourningafternatasha.wordpress.com/kids-and-cancer-8-brutal-truths-to-choke-on/

Fragility

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.

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.

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)."

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?"

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.

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.

Heavenly Father,  I pray...

Be with the families that are hurting and suffering from loss.
Be with the families that are fighting cancer alongside their children.
Give them strength to wake each morning with renewed peace.
I pray their hope is restored as they seek you heavenly father in the pain that they are suffering.
You are strength in a life that is filled with moments of loneliness and pain.
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.
I pray this question does not cause them to seek alternative paths that move away from you heavenly Father.
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.

Thank you for your grace, love, patience, and dying on the cross for our sins.

Amen

 

1,572 days I Have lived and Breathed Cancer, but...

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.

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. 

[Verse 1:]
The skies lay low where You are
On the earth You rest Your feet
Yet the hands that cradle the stars
Are the hands that bled for me
[Chorus 1:]
In a moment of glorious surrender
You were broken for all the world to see
Lifted out of the ashes
I am found in the aftermath
[Verse 2:]
Freedom found in Your scars
In Your grace my life redeemed
For You chose to take the sinner's crown
As You placed Your crown on me
[Chorus 2:]
In that moment of glorious surrender
Was the moment You broke the chains in me
Lifted out of the ashes
I am found in the aftermath
And in that moment You opened up the heavens
To the broken the beggar and the thief
Lifted out of the wreckage
I find hope in the aftermath
[Bridge:]
And I know that You're with me
Yes I know that You're with me here
And I know Your love will light the way
[Chorus 3:]
Now all I have I count it all as loss
But to know You and to carry the cross
Knowing I'm found
In the light of the aftermath
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.

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.

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. 

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...

My husband...on our Son's Cancer Journey

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.

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. 

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.

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.

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.

As Christmas Approaches...

As December 25th approaches I remember... 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.

As December 25th approaches I remember... 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. 

As December 25th approaches... 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.

As December 25th approaches... 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.  

As December 25th approaches I celebrate... 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.

Finally, when Christmas day approaches... 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.

Merry Christmas, and I wish you all much love and blessings.

The following words are from the song I shared above.

Be Lifted High by Michael W. Smith

Sin and its ways grow old
All of my heart turns to stone
And I'm left with no strength to arise
How You need to be lifted high

Sin and its ways lead to pain
Left here with hurt and with shame
So no longer will I leave your side
Jesus, you be lifted high

You be lifted high
You be lifted high
You be lifted high in my life
Oh God
And I fall to my knees
So it's you that they see
Not I
Jesus, you be lifted high

And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus you be lifted high

And if I'm blessed with the riches of kings
How could I ever think that it was me
For you brought me from darkness to light
Jesus, you be lifted high

You be lifted high
You be lifted high
You be lifted high in my life
Oh God
And I fall to my knees
So it's you that they see
Not I
Jesus, you'll be lifted high

Oh Jesus, you be lifted high
Oh you be lifted high
Oh you be lifted high in my life
Oh God
And I fall to my knees
So it's you that they see
Not I
Jesus, you be lifted high

How to Help

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.   Volunteers at the hospital are always needed to spend time with children. 

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.

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.

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. 

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, just hug us and listen to us. 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! 

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. 

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.  

Update:

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.

How you can Help

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.

1.  Mail a card
2. The hospital website allows for e-cards that are delivered to patients room
3. Phone calls even to just leave a voice mail saying you are here whenever you need someone
4. E-mail to encourage and to check-in
5. Attend Clinic with parent or patient
6. Meals
7. Gift Cards
8. Surprise family with a meal at the hospital
9. Special gifts to say you are thinking of them.
10. Call to go out for a coffee/tea
11. Donate blood in honour of patient and/or set up a blood donor clinic in you town to honour  patient fighting cancer.
12. Leave a special note in their mailbox at home to encourage and show support
13. Random jobs around their house
14. Childcare and Petcare