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

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





 

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. 

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.

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

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.

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.