Fragility

I look at the face of my children observing innocence and curiosity in all they do.  However, my children's eyes also hide a journey of fragility.  They have stories of loss, trauma, suffering, and fear.   These experiences have brought questions beyond their years.  I have seen the impact of this journey now that the hospital visits have become less.  My children's vocabulary is medical language and fears of serious medical concerns aligned with normal childhood infections.  I have observed anxiety and fear by questions or thoughts shared.  As a result, my children have been attending counselling to help them heal from this medical trauma.  How do we escape the pain of this journey?  We carry this journey so close to the surface, that any trigger related to childhood infections, bruising, bodily pain expels a flood of emotions.  Our family has been seeking restoration from this journey through involvement in sports, working, small getaways, and school.   This involvement conceals a lot of trauma, but the reality of this journey it will always be apart of us.  I believe it is a choice on how we make childhood cancer apart of our lives as a family and as individuals.  We can choose to let this cancer journey rob our joy or we can aspire to do great things with what we learned about the deficits of paediatric cancer.  I am coming to realize that as much as I want to continue raising awareness there is pain that will go alongside as I see other families suffer.  The empathy created is unmeasurable.  I want to reach out to each family to give them hope and offer a set of ears to listen to their pain.  I want to advocate for change in a system that needs further research for better treatment outcomes for children.

Recently, I changed our community Facebook page to "Smith Family's New Journey: Childhood Cancer Awareness," but the change came with hesitation.  I want this journey to be over completely, and sometimes I want to run from everything to do with childhood cancer.  I don't want to be reminded everyday of the "what ifs," and the reminders that statistically my son will have medical issues as he grows, and perhaps, secondary cancers.  I want to help change the reality of childhood cancer for other families, as it is this feeling of fear, panic, and anxiety that I don't want children and parents to experience.

Since our son's transplant, we have transitioned to roles of normalcy.  We work, we play, our kids are in school, and we have been laughing a lot more.  Our son continues to attend the hospital every six weeks for proactive care.  The reminders of suffering resurfaces every time we step into the corridors of the hospital.  Recently, I was reminded of how painful this journey has been when our son spiked a fever alongside a backache and a headache. I feared the worst.  All symptoms would were very similar to a CNS relapse.  The fever continued Saturday, Sunday, Monday, Tuesday, Wednesday, which we then rushed to the hospital.  At this point, I was not sleeping.  I was scared, crying, and wishing this journey never had to be ours.  We have already been walking this journey for 4.5 years.  I did not want the reminders that as long as I live I will forever have to worry about my son, and potential concerns for my daughters.  Every trigger from the last four years resurfaced.  I fought hard and prayed that this emotional pain would leave.  How does one make this emotional pain leave without leaning upon the only one who can take it?  It is walking in constant faith through prayer, and reading scripture that this emotion is bearable.  Faith is not faith, unless you choose to trust God in the difficult times.  It is easy to say you are walking in faith when you are not tested.  It is during this greatest storm that faith is tested and built.  I don't have the answers to this reoccurring journey and the fear that surfaces in the unexplainable.  I do know without a doubt that God will be glorified in this journey.  This life on earth will be unpredictable and never the same, and therefore, I cannot put trust in fleeting moments.  I walk trusting that "Jesus is the same yesterday, today and forever (Hebrews 13:8)."

The one attribute caused by this journey is the intense and unfathomable emotion.  I have wanted to walk this journey being authentic about my emotion.  This pain is the reality of our human experience.  However, I have seen believers in Jesus walk a hidden emotional journey as it is the perception it does not represent someone walking a journey of faith.  I do not believe that walking an authentic emotional and thought provoking journey is identified as lack of faith.  As we look at the scriptures in the bible, we see Jesus clearly experiencing emotion.   In the book of Isaiah it speaks of Jesus as "a man of sorrows, and acquainted with grief."  It is recorded three times where Jesus was weeping in the New Testament.  First, in John 11:35, states that "Jesus wept."  It means to shed tears.  Jesus tears were connected to the death of Lazarus.  There are many thoughts as to why Jesus wept, and one view is that Christ wept out of sympathy for those whose hearts were broken.  Is it not comforting to know that Jesus shares our feelings?   Second, Jesus wept over his enemies when he contemplated what would happen to Jerusalem.  He audibly wept (Luke 19:41).  Third, Jesus wept for himself in the dark hours before the crucifixion (Hebrews 5:7).  Jesus in his tears stated "My God, my God, why hast thou forsaken me?"

My journey as a mom to a little boy fighting cancer has caused raw emotion from the fear observed and the fear of the unknown.  There has been many unanswered questions posed to my heavenly Father.  These questions will go unanswered, but it has never caused my walk to be swayed to an alternative path.  God's hands have been over my son, and my life since I first began walking with Him.   I don't understand why cancer, and then protection over my son's body during treatment when he did not contract swine flu from myself and he was neutropenic.  I don't have the answer to why Gabriel fought pneumonia when he did not have an immune system awaiting engraftment of his unrelated donor's marrow.  I have the same questions as many believers and unbelievers.  Nevertheless, I pray and seek God to direct my path to show me His will.  I continue to seek His face to gain strength and peace in the unknown future.

The life we all live is fragile.  We never know what tomorrow will have for each one of us.  I keep a blog to write my authentic emotion and this fragility.  Why would I want to remind myself of the fragility of life?  It reminds me in this fragile state that God is the only way to walk with freedom.  Freedom from fear.  Freedom in worrying about the future.  Freedom from suffering and pain of the past.   He bears all things for us when we allow Him.  He is my freedom from allowing this authentic emotion to fracture my faith.  Thank you Jesus for taking our pain to the cross.  You give us freedom so we can live to be a light for you as we help others that suffer.

Heavenly Father,  I pray...

Be with the families that are hurting and suffering from loss.
Be with the families that are fighting cancer alongside their children.
Give them strength to wake each morning with renewed peace.
I pray their hope is restored as they seek you heavenly father in the pain that they are suffering.
You are strength in a life that is filled with moments of loneliness and pain.
We don't understand why children must face cancer as it seem unfair, but I pray that those who get stuck in this question will continue to seek you.
I pray this question does not cause them to seek alternative paths that move away from you heavenly Father.
I pray that you continue to remind each person of your love and to continue knocking on their heart.  Your gracefulness and patience is shown through you ability to never leave our side when we do so much to forsake you.

Thank you for your grace, love, patience, and dying on the cross for our sins.

Amen

 

1,572 days I Have lived and Breathed Cancer, but...

I look at my son everyday as a brave and heroic little boy, who has journeyed for half his life to defeat cancer.  This journey was long, this journey was traumatic, this journey will never be forgotten, and will always remain as a shadow upon our family.    The question and/or comment from people "that we can put this behind us forever to be forgotten."  I must share that I wish this to be true, but this journey will forever be apart of who we are.  There are doors that remain open with potential risks from treatment.  The headaches..."is this cancer?" The bruises on any of my children... "is this cancer?"  Memory loss..."is this from cancer treatment?" Learning disabilities..."is this from cancer treatment?" Organ function/failure..."is this from cancer treatment or is it cancer?"  These questions  speak to just a few of the continued concerns.  The questions...the fear... the unpredictable future...to bear this shadow for the rest of a parent's life for their children, without ever wearing this for your children to see.  How does one carry such a burden, but to live fully.

Hillsong sings a song that speaks to how I live fully so I am not held in bondage to the questions, fear, and unpredictable future that cancer has caused in my family.  Jesus will one day return, and this pain will never be present again as though it never happened.  I surrender my fears, pain and heavy heart to the only one who can carry this burden without fail.  He is the one that has provided me with peace when I felt like life here on earth was hopeless and dreadful.  He brings me laughter and joy that envelopes me. I have seen God's hand move throughout my life as a child to an adult.  He has never left my side.  His beauty is expressed in this world in many forms.  He provides this inspiration for me, even when I turn on the news to hear of others pain and hear of the stories my clients share. 

[Verse 1:]
The skies lay low where You are
On the earth You rest Your feet
Yet the hands that cradle the stars
Are the hands that bled for me
[Chorus 1:]
In a moment of glorious surrender
You were broken for all the world to see
Lifted out of the ashes
I am found in the aftermath
[Verse 2:]
Freedom found in Your scars
In Your grace my life redeemed
For You chose to take the sinner's crown
As You placed Your crown on me
[Chorus 2:]
In that moment of glorious surrender
Was the moment You broke the chains in me
Lifted out of the ashes
I am found in the aftermath
And in that moment You opened up the heavens
To the broken the beggar and the thief
Lifted out of the wreckage
I find hope in the aftermath
[Bridge:]
And I know that You're with me
Yes I know that You're with me here
And I know Your love will light the way
[Chorus 3:]
Now all I have I count it all as loss
But to know You and to carry the cross
Knowing I'm found
In the light of the aftermath
I lift my hands to heaven to thank my Heavenly Father to be an enduring light upon my feet as my path was guided by Him.  I lost sight on Him when I only saw what was in front of me, but when I closed my eyes to this trauma and looked to Him...I FOUND HOPE.  My faith in Him, and not what I was presently walking was the only way I was equipped to be steadfast and strong.

I write this post 1, 572 days later, which is how many days it has been since my son was initially diagnosed with High Risk Leukemia with a MLL Rearrangement (markers with both AML and ALL).  This is equal to exactly 4 years, 3 months, and 22 days. It is also how many days to his re-birthday.  June 1, 2013, was the day we celebrated our son's re-birthday.  It is the day he received his bone marrow transplant.  It is the day we celebrate him for fighting a fight with love, positivity, and hope.

Thank you God for always being here to carry us through this journey.  I continue to seek your face and pray for continued health in my son.  I pray that one day he will share his testimony to encourage others and glorify you Heavenly Father. 

Happy 1st Re-birthday my wondrous and amazing son!  4 years, 3 months, and 22 days...fighting cancer... One year post-transplant...   I am a proud mommy!  I love you my son!  I love my Girls!  I love my husband!  My family endures...

My husband...on our Son's Cancer Journey

There has been many times I have wanted to express my thoughts about one person in my life who has seen me at my worse and my best during this journey.  This person is my balance, my equal, my life, and the person who picks me up when I have felt despair.  He is my soul mate.  He is my husband.

My husband is a man who is quiet and solemn.  He is a man of great thought and wisdom.    My husband is one that does not like attention, and there has been many moments that I have wanted to share much about my husband as I have posted my thoughts and emotions about this journey.  However, I have hesitated until now as I know he likes his privacy.  But, today, I want to honour my husband on this anniversary day of our son's diagnosis. 

Many people do not see my husband's true character.  He is the funniest person I know.  He makes me laugh at the most inopportune times.  He is a father that goes beyond the call of duty.  You will find my husband playing make believe, playing games, making crafts, telling stories, and just having child-like fun.  He is also a father that cares and tries to listen to his children's thoughts and emotions.  God has blessed me with my husband Michael.

We have certainly had our ups and downs as all husband's and wives do, but as we have journeyed together we have become closer.  There have been many moments when I have feared, cried, worried, and my husband came to encourage me.  He has held me and let me cry.  He allows me to be what I need to be in any given moment, but without letting me fall.  My heavenly Father guides me, gives me faith and peace that surpasses all understanding, but there have been days where this journey has been difficult.  My husband has been by my side during those days to encourage my heart.

We have balanced each other during this journey as though we have practiced this dance.  During days of difficulty for my husband it was my time of strength, and when I felt weak my husband was there for me.  We have perfected this dance over the last four years, but sometimes we stumble when there is unknown territory.  However, it will never change the fact that Michael is the person who I am forever glad to have my by side through all adversities.  I am glad he has been by my side during our son's journey with cancer.  He is and will forever be the most wonderful man, husband and father for our family.  Thank you Jesus for this gift of marriage.  You have brought us through much together and I pray we continue to trust and rely on you.  Thank you to my husband for being my partner during this journey that has effected us physically, mentally, emotionally and spiritually.  We can conquer everything together, as a family of five, and most importantly, with trusting God in all that we do.

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.