Wednesday, September 26, 2012

A Place we Call Serenity

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.

 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.

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.

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.

 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."

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. 

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."

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. 

An Update

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.

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.

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. 

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. 

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.

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.