Thursday, April 26, 2012

As I Continue to Walk...

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  We received a vast amount of information that left Mike and I feeling sad, frustrated and withdrawn.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.  

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.

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.  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.  

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.

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. 

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.

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.  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.  We anticipate this surgery will be completed in 1.5 weeks from today, which is enough time between his transplant.

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.

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. 

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.  

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.

I continue to walk..with peace, love, and faith.

"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."

Philippians 4:4-6

Thank you

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.

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.

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!

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.

Thank you to 104.7 Heart Fm for pledging to support Gabriel's goal through the upcoming Navy Vets charity hockey game.

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.

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.

Please Pray for the Following:

1.  Protection over Gabriel's body so there is no long term complications radiation and high-dose chemo.

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/

3.  Gabriel's new marrow engrafts and his blood counts climb quickly to decrease the risk for infections.

4.  No future cancers

5.  Does not get any infections in his most critical days.

6.  Our daughters and their grandparents do not contract any infections while they are caring for our daughters at Ronald McDonald house.

7.  Mike and I remain infection free.

8.  No long term cognitive or physical development issues.

9.  Peace and strength for Mike and I as we continue on this long journey.



Sunday, April 1, 2012

A Letter to Leukemia


Dear: Leukemia,

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.

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.

Sincerely,

Tina Smith
 (A mom to the most amazing son)

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.