Friday, May 25, 2012

A New Phase has Begun...

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.

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!

Update on Gabriel's Progress

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. 

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. 

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.

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. 

Thankful

1. I am thankful for our Heavenly Father whom answers prayers
2. Thankful to all of our family and friends who have supported us.
3. Thankful for making new friends through this journey.
4. Thankful for Jacob's Story and all that you have done for us.
5. Thankful for Trevor, Jen and Geoff (my in-laws) who have completed two fundraisers
in Alberta for my family.
6. Thankful for my parents and parent-in-laws for helping with our girls while at RMH.
7. Thankful for Dave and Carolyn for supporting us through being available to help us and for the slide show.
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.
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.
10. Thankful to all those who continued to make us meals.
11. Thankful to everyone who sends us words of encouragement on my blog and/or facebook.

Prayers

1. Please continue to pray that Gabriel does not get Graft versus Host Disease
2. Gabriel engrafts and quickly
3. Protection over him from infections
4. No future complications from his transplant
5. No future cancers
6. Protection from infections for Mike, I, our girls and grandparents. 
7. That one day Gabriel will share his testimony and will inspire others in the future.

"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."

John 14:27