Tuesday, December 18, 2012

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

Tuesday, October 16, 2012

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





 

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. 

Thursday, August 2, 2012

I cannot have Peace…when I Fear


Another day has come and gone as I sit at my keyboards to express authenticity of emotion and thought about this journey.  I so often begin my posts with emotion and pain, but this evening I want to begin with my blessings.

Our children have blessed us with expressions of love during times I have felt like crying.  The simplicity of either my son or daughters' hug as they wrap their little arms around my neck, always makes me speechless and appreciative of the gift of children.  The unexpected laughter from my children over menial tasks and routines, that causes a ripple effect of laughter to all that are within a short distance.  Our life is described as one of simplicity and isolation, but our children create a world of fantasy that wraps us with love and admiration.  To love life at its fullest is to observe and replicate that of a child’s simple worldview when life becomes so complicated.  Our children are the most important reminders in this world of why we love, respect, empathize and strive to do good, seek peace and love.  Most importantly, our children remind us of our Heavenly Father’s love.  If, we as parents, can love our children as we do…how much more does our Heavenly Father love us.  This thought gives me chills.  Our children bless us even in times of pain, anger, sadness, frustration, and fear.  Our children argue as any siblings do…our children test boundaries as all children do, but I know that my priority as a parent is to teach, correct and emulate Jesus Christ so that my children will grow to be healthy, caring and honourable adults that will one day glorify God. I want to glorify God by instructing my children as God instructs me.

There are many days when my humanness leads to destructive thoughts, which proceeds to an emotion that controls.  This emotion is fear.  Fear has remained a constant battle over this journey, and one that I have tried daily to not succumb to.

I must take a moment to share a destructive pattern that I fell into during this journey, and may be a common theme for others who have a child fighting a life threatening illness.  I fell into a trap, where I needed to be strong at all times for everyone.  When Gabriel was diagnosed in 2009, I decided that I would fight the best fight I knew how.  I would characterize myself from 2009 to 2011 as robotic when it came to medical care.   As 2011 approached, I began experiencing the compounding emotions suddenly as my body no longer was able to hold on any longer. I stopped sleeping.  I walked around anxious, and fearful.  I have shared my emotions in all my blog posts, but the emotions did not feel as raw until 2011.  I did cry and was angry, but something happened in 2011.  I began experiencing all those emotions (anger, fear, sadness, frustration) at once, and they felt more real then previously.  I decided it was time for counselling, as I could no longer cope.  My first session I shared my story as though it was a book I just read as I had so often in the past.  The next session, my counsellor began asking me the hard questions that I was never prepared for and never said out loud.  Not once did I ever voice this sentence to anyone…until that session.  My counsellor asked me what scared me the most that was causing me to fear?  I looked at her and could no longer hold back my tears.  For the first time in an audible voice I stated, “I am scared my son will die.”  I cried uncontrollable for a long time.  She let me cry.  I needed to cry like that as I held that pain in for so long, as I did not want the sense of losing control.  I learned something at a deeper level that reinforced the clinical education I had received prior to my journey with my son.  We need to be real.  We need to experience pain.  We need to talk about the pain when it happens.  We are not out of control when we do, but are strengthened even more when we allow ourselves to experience emotions at its truest form.  Today, I take all my emotion to my Father in Heaven so that He can hear my pain.  I cry…I get angry…I ask the whys…I seek Him through reading and studying the Word of God.  The bible guides my footsteps. 

I want to touch a little further on this post about why fear is so pronounced each day in this journey.  We live in a world of statistics, and science.   As parents, we read to determine the best course of medical treatment. We meet with teams of doctors to trust that the care they provide will protect and cure our child.  We hear and observe what cancer does to children.  It is in our face.  You have to ask yourself that when you see the destructive nature of cancer and of treatment…”how do you not fear?’  This journey encompasses sadness as the reality that surrounds us.  We observe the suffering of families who lose a child to either cancer and/or treatment.  We meet families whose child suffers further from organ damage as a result of the treatment that was to cure them from cancer.  A parent does not know the journey until it envelops you completely, and you have to be prepared for the unpredictable.  All at the same time being strong, peaceful, and caring for your other children.   No parent could ever be prepared for this journey.  We are not prepared to watch our child suffer.  Just as I was not prepared to claim vocally that what I feared the most was losing my son. 

I have learned many times over that fear causes me to lose sight in God’s amazing hands upon my life.  Fear robs me from everything that God has to offer.  I would honestly state that this has been the most difficult test and difficult lesson that I still struggle with today as I write this post.  Basically, cancer + transplant + unpredictability=fear.   I fear because of the unknown within the realm of cancer and a bone marrow transplant. When I stay attuned to God’s Word my fear dissipates and peace enters.  But, Satan quickly lures my thoughts during this journey and there are times I am not prepared.  I find myself on my knees once again asking God to quicken my life unto Him.

I know that victory cannot be won as long as I serve the problem of letting my thoughts control me.  Matthew 6:24-25 states: “Ye cannot serve God and mammon.  Therefore I say unto you, take no thought for your life.”  Immediately after that Jesus said, “No man can serve two masters,” He said, “Take no thought.”  I am learning that I falter when I serve my thoughts.  Isaiah 55 says for us to “forsake our thoughts, and by the Word, take God’s thoughts.  Furthermore, 2 Corinthians 10:5 says “ to cast down thoughts that challenge the Word and bring into captivity every thought to the obedience of Christ.”  My all-consuming thoughts that create fear do not serve God hands upon my son and my family.    Jesus is whom I want to serve.  Not my thoughts.  I need to continue walking in Faith in God’s Word for myself, and my family.  I pray that this will be my path. 

An Update

I want to keep updating my blog posts about my son, as I know there are some who do not have a Facebook account. 

Gabriel has been discharged repeated times to only be admitted once again.  Gabriel has been fighting low oxygen levels, respiratory infections, and CMV reactivation.  He is doing exceptionally well in spite of the battles that continue on this journey.  We are hearing him recite the phrase “I am bored” often.  I would rather hear this phrase as it means he would prefer to be doing something more exciting, and perhaps, has more energy to do just that.  Gabriel continues on multiple medications both orally and IV.  We hope as the middle of August approaches that his medications will be reduced as we anticipate returning home in September.  Our outstanding concern is that he has a reoccurring concern with low oxygen stats.   A Respirologist has been referred to Gabriel in hopes of assisting with these concerns.  At this point, our primary doctor believes that radiation has caused problems with his lungs.  However, there is no consensus as to what continues to lower Gabriel’s oxygen.  We hope to have this medical issue investigated further.  He is not in any increase safety risk, but his baseline has changed significantly when he is sleeping.  Gabriel has not had a fever for over two weeks, and we are very thankful.   We are thankful that Gabriel continues to move forward, and thank God for his continued protection upon our son as this season continues.

Please Pray for the Following:

1. Pray the Gabriel will be well enough to eliminate steroids
from his medication regiment. (steroids increases his
risk for infections...one in particular..CMV, but also
controls Graft versus Host Disease).

2. Pray that CMV reactivation no longer occurs.

3. Pray that Gabriel will not see any further complication
from his Graft versus Host Disease. He DOES NOT get Chronic GVHD, which can occur now or anytime after 100 days post-transplant.

4. Pray for healing over any respiratory conditions that the
medical team is struggling with diagnosing.

5. Pray that there will be no permanent damage from
radiation and chemotherapy.

6. Pray he will forever be healed from Cancer.

Tuesday, July 17, 2012

My Prayer...

Heavenly Father, I lift my voice and my eyes to you as I ponder the unexplained process of this journey. I am called to trust you with all my heart and all my soul. You have been teaching me patience as it is not my timing, but yours. My heart aches as each day continues to be lived in the moment. I pray that these moments can become a day, a week, a month, and a year knowing that my son and my family can gain back the time we have lost. I wish that my emotions would not impede upon this journey. The emotions that cause fear, anger, and frustration. Each time I am reminded to place my son in your hands. But, it seems hard as our life is a revolving door in hospitals. I am reminded again and again to trust you Jesus to take care of my son and to lay him on the alter. It seems I am not always obedient to keep my son remaining there. It is just hard when we have a dose of time together to then be placed back in the hospital for yet another concern. Oh Lord, when I walk these hallowed halls of this transplant ward to observe the families who are suffering. My heart hurts for them, and pray for your return. I want to go to each room to love and support them. To pray and tell them that through God, "He is here to give you peace". It is such a sad place Jesus for children and their parents. I pray for all the families who need rest in you. I pray Jesus for the families who have to face the devastation of cancer once again after a transplant. I pray that your awareness of you can be known to these families. I believe you can move mountains when we have the faith to believe. The most difficult part of this journey is that we observe the suffering with our eyes and touch with our hands. It is living this suffering day and day out that causes me to be on my knees. I want to move to a time in my prayer life that I come to you with less of my family's suffering. I do grow weary as this revolving door continues. I am constantly taking hold of fear that is triggered by hearing the stories of families facing cancer and serious GVHD 100 days post-transplant. I pray Jesus this is not our story. Satan is quick to remind me that when we thought we were on the road to recovery we were hit again with cancer, so be weary to trust that this journey is done. Jesus, I have come to know that there is a spiritual warfare happening in this journey. The first scripture I learned in Sunday School when I was only 10 years old was..."wherefore take unto you the whole armor of God that he may be able to withstand in the evil days and having done all to stand" (Ephesians 6:13). I never thought this scripture from when I was ten years old would be the one that encircles my thoughts. I know the Holy Spirit is telling me to be equipped in the Word of God. Trust in the Word as God is the bearer of truth. Satan is the one that tells lies and will do whatever he can to cause me to feel defeated. I pray Jesus for protection over my mind and to place people at the right time to encourage my faith. This journey is isolating and lonely at times. I am praying that those days where this journey feels isolating that you fill me and remind me that "you will never leave me or forsake me.". Jesus, thank you for the blessings in this life you have given me. Thank you for my three beautiful children. Thank you that there is something in each day that allows me to smile. Thank you for protecting Gabriel from serious acute GVHD. Thank you for causing Gabriel's transplant to be expedited as so many people wait. Thank you that our unrelated donor was a 10/10 match. Thank you that Mike and I have remained infection free so we can care for our children. Thank you for bringing people into our lives to support and pray for us. More importantly, thank you for my salvation as one day I will come to live with you for eternity with no more suffering. In Jesus precious name, Amen

Saturday, June 30, 2012

A Day in the Life of our Family Post-Transplant

I am sitting in the very same room that Gabriel entered the day of his transplant. This room is shadowed with much pain from the first few weeks post-transplant. This journey post-transplant, had many facets that caused us and the team to be concerned. BUT, God delivered us faithfully as his Word instructs. I had shared in my previous post that I was not certain of the days ahead, but I trust my Father in heaven to continue protecting my son. We are sitting in this room once again as my son's CMV has reactivated. We are thankful for the efficiency and knowledge of Sick Kids to ensure Gabriel receives expedient care. We are disappointed to be here so soon after discharge that are also compounded with the memories of this room. Perhaps, it is a place I need to be as means to heal and move forward beyond the horrors of this room. My son is sitting beside me laughing and playing, which is a contrast of his behavior from only two weeks ago. I am thankful for how far we have come when I think about where we started so long ago in February of 2009. My three year fighting cancer at diagnosis to relapse and fighting cancer again. He has now received a new marrow that gives him a renewed life of physical health. Mike and I have gone through many nights of fearing the death of our son to realizing that we have to trust in God's scriptures that healing is ours when we have faith to believe. Today, our journey continues with uncertainty based upon the unknown realities of this journey. Gabriel's vulnerability to minor infections can place him at a high risk. Our goal for the next six months to one year is to protect him. I wanted to take this opportunity to share what our life looks like while living at Ronald McDonald house and when we return home. I know there are many people who hear the words "discharge" and believe that all is completed in this journey. Perhaps, even the assumption that Ronald McDonald house is like a long term vacation for our family. I thought it would be helpful to provide a perspective of daily life and the future. The doctors keep advising us that everything takes time. Time...we know this word well as it also coincides with the word "waiting." These two words continue to be the theme describing this journey. Our Life... Upon discharge from the hospital means his care is transferred to home care nursing and to mom nursing (my new role). Gabriel has a nurse that comes into our apartment twice a day. In the morning she sets up IV antibiotic to ensure the lung infiltrates are gone, which was from the concern with pneumonia. This IV antibiotic will last for another 30 days. Gabriel has high blood pressure that he receives medication for in the evening, so he requires blood pressure monitoring three times a day. Once his med runs over the hour the nurse leaves and returns in the evening to connect Gabriel to his IV once again for 12 hours of IV hydration. Gabriel's eating and drinking has not normalized at this stage. Gabriel was not drinking or eating for over three weeks, so his body has to reaestablish itself again to this process. IV hydration assists with the fluids he is currently lacking. Gabriel receives numerous medications both in the morning and evening to prevent further complication of GVHD (see previous post for explanation of GVHD). He also receives preventative meds for infections that can be life threatening if he was to contract such infections. In addition to Gabriel's transferred medical care to the house we have to avoid exposure to anyone we do not know. The other difficult aspect of this journey is Gabriel cannot be indoors in large family gatherings as the infection risk is too high. So, transplant has been complete and engraftment has started, but Gabriel's body still does not recognize the new marrow as his cells. His body is still fighting to kill these new cells, so the medications he receives causes his suppression of his immune system to allow the new ones to move in and take over. This is why GVHD is present. As a result, the team cannot determine what the future holds, but is ready to respond when they have any visible signs of complication. Today is an example of the unpredictable nature of this journey as we are admitted so soon after discharge because of a virus that has began to be reactivated and if not caughht soon enou could be fatal. Gabriel's bloodwork started to show signs of reactivation of CMV (explanation in previous post), and the team wants to treat as soon as possible before complications ensue. This virus is checked every Monday because of the severity and commonality of this virus among BMT patients for those who were positive prior to transplant. Even though medical care continues even after discharge I am ecstatic about being together with the people that matter the most to me in this world. My husband and my three children can be a family together no matter what life throws at us. We are happy just to be together as long as we are together. Yesterday, we played hide and seek in the Jays room (indoor gym at Ronald McDonald house) with the lights out. I have not laughed so hard in a long time. Just my family playing silly hide and go seek. It was perfect... My New Role I never envisioned that another hat I would wear was to be a participant in my son's medical care. I was instructed to take Gabriel's blood pressure manually, which is very interesting. I have used electronic blood pressure monitors, but 8b prefers manual blood pressure as it is more accurate. I was given a crash course and I am beginning to feel confident. I have learned to provide IV hydration, to flush and heparinize Gabriel's Hickman. I woke this morning to stop his IV and to take care of his central line. Finally, if Gabriel's blood pressure is too high then I have to determine if he needs a nifedipine, which is medicine placed under his tongue that drops his blood pressure very quickly. I have to make sure Gabriel's blood pressure meets his criteria to be given this medication. At this time I am working at trying to get Gabriel used to his dad taking on some of these roles. Gabriel has wanted only me to provide this care, but we are trying to help Gabriel feel secure knowing daddy is just as good as mommy. The Future I explained above a few details as to the future about protecting Gabriel from infections and the risk of GVHD. Our criteria given by the hospital for assessing infections and visits is based upon a household being seven days without any symptoms, which includes colds. If one person is sick in a household then we cannot visit with anyone in that household. This will be the hardest part for Mike and I as it seems more stringent than our previous concerns when Gabriel had neutropenia (low counts to fight infections). This will not be forever is what encourages us. The concerns decrease the further we are from his transplant day. The milestones (the ones we celebrate) carry on starting from 2009, and this is just another path in this journey that also has completion dates that we can celebrate. One day we will have a huge celebration for our son. A celebration for a renewed life...a celebration to say thank you to everyone who have supported us....and a big party as a way to give back. We look forward to meeting people who have supported us and reconnecting with others we have not seen and spending time with you all at a wonderful day of celebration. One day soon this will be here.... Thank you for reading and following our journey.

Monday, June 25, 2012

Day +24: In Life there is Valleys and Mountains

Tonight, as I sit to write this post my fingers seem to rest on the keys of my computer seemingly  replicating most of my posts over these past few months.  I find that my words do not come as easy.  Perhaps, exhaustion and/or contemplating the exact words has come to be a daunting task.

The past 30 days have provided many opportunities for reflection over these past 3.5 years.  I have reflected upon what I have learned, where I need to grow, and who I want to be as a person to my children, husband, family and friends.  My reflection time often triggers memories of events causing me to think about what I have learned and blessings in each memory so that I don't feel the weight of this world.

 It was during a time of  reflection a poignant memory shockingly surfaced.  This memory had images of me visiting the outpatient clinic at the London Pediatric Medical Day Unit, which I grew accustomed to with my three children.  However, the image that came was very different compared to previous memories.  I had been collecting bravery beads for my son for a long time.  On this particular day I went to gather beads that reflected the procedures he has received over the past week, but what was different was it was the first day I noticed the bead for a bone marrow transplant.  I remember looking at that bead, and feeling many emotions and experiencing many thoughts.  This bead stood out more that day than any other day.  I am sure most families going through this journey fear relapse.  They fear having to place that bead upon their child's necklace marking this particular story in their journey.  I am not and was not unlike any other parent who feared relapse and a bone marrow transplant in this journey.  I believe it was that day I stopped collecting my son's beads.  I never thought that this day would become a reality for my son...my family.

 Fear has a lot of power over ones choices and path in which they follow.  I am not suggesting fear created this path in this journey, but it can make ones life very difficult.  You lose sight on blessings, and only fear the future.  You limit your life and those around you when fear is your leader.  I can honestly say that fighting "the spirit of fear" as a believer in Jesus Christ in this journey has been and continues to be the hardest fight.  The bible states “For God has not given us a spirit of fear, but of power and of love and of a sound mind.”  A spirit of fearfulness and timidity does not come from God. (2 Timothy 1:7).  This spirit of fear has overcome me at times, and it is during that time I have needed to trust in and love God completely or this fear would have crippled me.  I could not allow this to occur for my family and for myself.  God has called me to trust, and not to lean on my own understanding.  I need to be faithful to God's commandments and will for my life.  But, this is a constant and sometimes daily journey for me.  I am often crying on my knees during my most weakest times when I have received concerning news from the hospital.  My relationship has grown stronger and closer to God because He has shown me at my most darkest hour His love.  He is the one that has lifted me up when I had no more to give.  God gives me the strength to endure and move forward in this journey with thankfulness in my heart.  I have seen God's hands on many aspects of this journey.  It is not the journey that I would have chosen or the process in which I would have chosen it to be, but God has been in this journey holding us in His hands.  I have seen many prayers answered and felt God's presence through the Holy Spirit.

My son engrafted on Day +18, and was immediately given a step down room that day.  I never expected Gabriel to engraft so quickly.  In addition, we were advised that platelet engraftment can sometimes take more than 30 days to engraft.  My son's platelets engrafted around Day +23.  Gabriel was fighting three infections, and one being pneumonia without an immune system.  He was protected and delivered from these infections.  One week from being in isolation he was given a pass to leave the hospital for an outing to Ronald McDonald house two days in a row.  I am thankful for these blessings.  God is my light amidst this storm.

The Next Phase

 I don't know what the next phase of this journey will look like in particular for my son.  I am aware of the risks over the next 100 days, six months, one year and two years.  The time we are focusing on at the present is the 100 days.  Gabriel prior to engraftment had a full body rash and spiked a fever that lasted for more than 8 days.  The fever and the rash was suggesting three possibilities defined either as engraftment syndrome or pre-engraftment or Graft versus Host Disease.  The only way they could diagnose this rash/fever was once he engrafted.  On Day +18, the head doctor came to assess Gabriel and advised us that Gabriel has Graft versus Host Disease (GVHD).   When Gabriel's body began to fight the new donor cells, it appeared as a rash.  It is coined Graft versus Leukemia when it comes in the form of a body rash and stays only as a body rash.  A little bit of this disease causes the body to fight and destroy any remaining cancer, which is why it is defined as Graft versus Leukemia.  Research is amazing and powerful.  However, too much of GVHD is when it goes beyond a rash and starts to go after such organs as his liver, gut, etc.. We don't want this to happen, and so Gabriel is receiving two medications to suppress his immune system so his new cells can overtake his own, but this also creates a risk to triggering infections as his immune system is suppressed.  As a result, it is a balancing act of suppressing his immune system with steroids to prevent further GVHD, while not staying on steroids too long so that serious infections are not triggered, such as CMV.  Gabriel is positive for CMV.  Statistically, most children undergoing transplant are CMV positive as we are usually exposed to this virus as a child. A healthy immune system can fight this virus.  Suppressed immune systems cannot fight this virus without assistance and can become serious.  (CMV is a member of the herpes virus family that includes chicken pox, cold sores, and infectious mononucleosis (mono).)

 I am constantly reminded that this journey continues to have both valleys and hills.  I don't know what the next few weeks will look like, but I do know that the only way I can walk through this journey to the end is with God as the leader of my life.

Tonight...

Just 30 minutes prior to starting to write this post (that has taken me forever to be able to log on to blogger) I received word from my husband (his turn at the hospital) that our son spiked a fever.  My fear surfaced and my mind went straight to the worse case scenario.  The Holy Spirit quickly interrupted those thoughts with trust in the Lord with all your strength, and "calleth those things that be not, as though they were."  My son is healed!  I will continue to proclaim this and trust in God for my son's healing.  Please continue to proclaim this alongside me that my son is healed. 







  

Thursday, June 7, 2012

An Update as We Enter Day +7

I have been writing my posts on facebook as I know most people log on to receive updates.  However, this blog has been one that I have kept since Gabriel was diagnosed at three years of age.  One day when Gabriel looks back on this journey I will provide him with a printed copy of this journal/blog when he is old and mature enough to conceive all that he has gone through in the words of his mom. 

Gabriel has completed his three rounds of cranial radiation, three days of morning and afternoon full-body radiation.  Gabriel did well going through this treatment, but began to feel tired at the end of his full body radiation.  He was admitted as inpatient on the final day of cranial radiation in preparation for high dose chemotherapy.  He kept his energy and appetite during the duration of high dose chemotherapy.  The day of his transplant can only be described as something so amazing, but the day itself being anticlimactic.  A bone marrow transplant is similar to receiving a blood transfusion.  The difficult part of this journey begun when his blood counts crashed and his immune system bottomed out.  The difficult part of this journey began on Day +5 when Gabriel spiked his first fever and got his first mouth sore from the high dose chemotherapy.   

We are living at Ronald McDonald House (RMH) Toronto in a beautifully renovated building.  We began our stay in one large room with two beds for our family of five, and then decreasing to just three of us at one time staying in the room.   Recently, we were transferred to an apartment located within RMH as we are considered a longterm family and having other children in the house.  We feel very blessed to be given this apartment as it feels like a home away from home.   Our girls permanently live at RMH, and are cared for by one set of grandparents who switch to another set of grandparents every seven days.  My parents and Mike’s parents have graciously made it their goal to help us get through this journey by being with our girls during the day.  Mike and I take turns with the girls in the evening as only one of us stays with Gabriel.  We are doing 24 hour shifts at the hospital with our son.  It has been difficult for me because Gabriel finds comfort with having me there and struggles when I leave.  I come more frequently as he only wants me to do his sponge baths and bandage changes for his Hickman.  We had one difficult evening when Gabriel spiked his fever as they have to take peripheral blood from his arm.  He only wants me there for this bloodwork, but I was hoping that his dad could do this without me.  However, I decided to leave and did not arrive on time as the team needed to do his peripheral blood to test for infections.  We are now at day +6, and Gabriel is having much pain and discomfort that is being controlled by pain medications. 

Day +6:  This journey bears its greatest weight when our son struggles emotionally and physically.  For 3.5 years we have come to be alerted for any signs of infections that roam throughout the community.   We adapted to rushing to the emergency department in the middle of the night in London at the first sign of a fever to then be admitted as inpatients.  However, this new phase feels more difficult than I envisioned.  The team of Doctors who follow BMT patients advised us that statistically Day +5 is when mouth and throat pain may start (similar to canker sores throughout your entire mouth and throat), diarrhea, nausea, and possibly fevers.  I sit beside my son hugging and touching his head attempting to understand how I can help him.  A mother's pain is the greatest when your own child suffers, and is multiplied when you cannot do anything to minimize this pain.  My son has started a continuous morphine infusion to help with this pain, which also results in monitoring his oxygen saturation levels as this is a serious narcotic.  Gabriel is also receiving around the clock IV antibiotics to prevent and/or fight what is causing his fever the past two days.  He is also eating minimally and is now receiving TPN, which is IV nutrition.  We are reassured by the team that this is a “text book” example of a BMT post –transplant patient.  I am still challenging myself to feel “reassured” by this description of my son. 

The only place I go when I am feeling emotional pain is to trust the one whom gives peace beyond comprehension.  I continue to pray and seek Scriptural Words of Truth written for us all to read.  The bible has taught me much these past few months, and I have been challenged to believe in this truth.  It is not just a book you read, but a book that carves your entire destination.  I admit that I have not always abided by the word of God, and I am still learning about myself and God.

 I trust and believe that God continues to protect and heal my son, as I know He loves him even more than I.  I may weep as any mom would when her son suffers, but they are not tears of distrust.  These tears I shed are lifted up to my father in heave to ease my pain and burden.  I may not understand and know the days beyond today, but I lift my mind and heart to you oh Lord for this burden is heavy.  I wish I could explain why this journey or why this suffering.  I cannot, but I do know that God will be here and He will be glorified.  God’s glory comes when ones journey is used for a greater good to serve for God’s purpose.  I stand firm and believe that my son will be healed and have an amazing testimony.  I believe in this for my son.

God has provided me with peace throughout this journey.  But, I cannot deny that this journey is hard and emotional.  It is the unpredictability that catches me and reminds me to lay my sorrow down so that my Father in Heaven can carry it for me.  So I continue on this journey with the reminder that I must continue to seek God through prayer and in His word.   

I waited patiently for God to help me; then He listened and heard my cry. He lifted me out of the pit of despair, out from the bog and the mire, and set my feet on a hard, firm path and steadied me as I walked along. He has given me a new song to sing, of praises to our God. Now many will hear of the glorious things He did for me, and stand in awe before the Lord, and put their trust in Him.

Psalm 40:1-3

This journey has brought many wonderful people into our life.  God has shown us much during this journey that I am so grateful for experiencing.  I am thankful to everyone who continues to encourage and inspire us through your messages of support.  No person should do this journey in isolation.  We came to realize this once our son relapsed because prior to these past six months we tried isolation.  Support from friends and family has been a wonderful blessing in our lives. 


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









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.