Thursday, June 7, 2012

An Update as We Enter Day +7

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

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

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

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

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

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

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

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

Psalm 40:1-3

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

1 comment:

  1. Hi Tina (and family),

    I am so happy that you are keeping your blog up. I do not have Facebook but try to get regular updates from Mrs. Hewitt (at Northdale), so I appreciate that I can take a glimpse into what you are going through and also lift Gabriel and your entire family up in prayers specific to your needs at the time.

    A group of staff from the school gathered to pray for Gabriel and his transplant operation last Friday morning and it was a special time for us.

    As I drove to school on Monday and was listening to a worship CD the song "In Christ Alone" came on and it has become my prayer for your family every day on the way to work this week. The first verse and the bridge speak to me very powerfully for your family at this time.

    "In Christ alone my hope is found,
    He is my light, my strength, my song;
    this Cornerstone, this solid Ground,
    firm through the fiercest drought and storm.
    What heights of love, what depths of peace,
    when fears are stilled, when strivings cease!
    My Comforter, my All in All,
    here in the love of Christ I stand.

    In Christ alone I place my trust
    and find my glory in the power of the cross.
    In every victory let it be said of me,
    My source of strength,
    My source of hope
    Is Christ alone."

    May you, Gabriel and all of your family find victory in Christ. I do not know exactly what your faith background is, but it definitely seems to be one of Christian woman.

    Blessings in abundance,
    Melissa Jansen