Tuesday, March 20, 2012

Relentless


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. 

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.

A Glimpse in the Present and Future

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.

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.

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.

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.

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. 

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.

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. 

Thank you to everyone who has blessed my family through messages, financially, food, and providing an ear to listen.

Sunday, March 4, 2012

In my Greatest Fear Intercessory Prayer has Helped

 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.

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.
1 Timothy 2:1  
First of all, then, I urge that supplications, prayers, intercessions, and thanksgivings be made for all people,

Matthew 18:19-20
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.”

Romans 8:26
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.

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.

Updates:
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.

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. 

The BIGGEST 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.
I am thankful for:
1.  To all those that pray and support us through many ways... food, prayers, thoughts, comments, private messages on facebook/blog, and financially.
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.  
3.  For our amazing families who strive to do whatever they can for us.  We love you all Bender and Smith family.
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.
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. 
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.   http://idttys.org/
Please pray for the following:
1.       Successful Bone Marrow Transplant and Recovery in Post-transplant

2.       His new Bone Marrow recovers quickly

3.       Protection from Infections while his immune system is completely compromised post-transplant

4.       Protection over my girls so they remain infection free

5.       Protection over Grandpa and Grandma Bender and Grandpa and Grandma Smith so they remain
        infection free while they care for our girls at Ronald McDonald House.

6.       That we will be financially okay during this journey

7.       Peace and strength for Mike and I

8.       Please pray that his organs will be protected from chemo and radiation

9.       We are told that Gabriel will be 99% percent infertile after he receives full body radiation in  
        preparation for this transplant… I would like to begin praying that through God’s healing power
       that this is not true for my son.

10.   Gabriel’s body does not reject this transplant and he does not get any diseases or future diseases
from this transplant.