On the Friday after Crash Day (March 8), Barb and I had been at the hospital all day to get blood and platelets but we did not see our doctor. That evening, he called me at home. He was supposed to be on holidays but wanted to discuss our plan of action before he left. We don't get a lot of clinic time with him so he wanted to go over it all again.
We discussed what he knows and assumes about the crash and where that leaves us. It's not a good spot. We reviewed the plan for a Reduced-Intensity Transplant; he talked about the lack of information for anyone with my disease, who has been through a transplant, then had slow engraftment, and then failure. He talked with his peers in Europe and around the world, and realized that there is no printed information to work with. We are blazing new ground. CCML is a very rare and ugly disease, with uniformly poor results for treatment.
However, he described himself as a chef, using his experience, knowledge, discussions with peers, and his instincts to come up with a recipe for the chemotherapy treatment. That it would seriously weaken my stem cells and the cancer cells, but not cause organ failure. The dates for the transplant weren't set until a week later, but we are going forward with this reduced-intensity transplant. I go into the isolation unit in the hospital on Tuesday, March 19 to start five days of chemotherapy (Tues-Sat), two days off for the chemo to clean out of my blood, and then the transplant on Tuesday, March 26 (this is also the collection day for the donor).
There are three big differences with this transplant compared to the first one last September.
1) Chemotherapy
In September, I received the full, high-dose chemotherapy treatment. It was supposed to kill all of my own stem cells, as well as kill any cancerous CMML cells. Being otherwise in good health and not having been beat up by chemotherapy before, I handled it pretty well. The doctors are now concerned, though, of the cumulative effect of more chemo on my organs. So the plan is decrease the toxicity of the chemo to my body to prevent greater organ damage. We are also using a different concoction of chemo drugs (my doctor's recipe) to hopefully work better. Simply put, it won't kill all of the cancer cells and all of my own stem cells. However, it will weaken them for my new immune system to attack them.
2) What We're Asking the Donor Cells to Do
The donor stem cells have to do a lot more work this time around! The first time, we needed them to engraft, produce blood, and produce an immune system. That, on its own, is a big task! Now, we are asking the donor stem cells to do all that plus seek and destroy any remaining, weakened, cancer and stem cells from my body. This is known as the Graft vs. Leukemia effect.
3) Collection of Stem Cells
In September, my brother received shots to encourage production of stem cells so that they would spill over from his marrow into his blood. The doctors filtered those stem cells from his blood and I received them by IV transfusion on the next day. This time, instead of taking stem cells from the blood, the doctors will be extracting bone marrow from my brother's pelvis. This will be done under general anesthetic on the 26th. The technicians will prepare that marrow for IV transfusion into my blood later on the same day. This process is more difficult on the donor than last September, but we are hopeful that this difference will help the engraftment process. The stem cells will be at a different maturation level, so it might increase the quality of the engraftment. Collection from the bone marrow is rarely done - it is usually used after a standard transplant has failed.
It sounds like we have a very good plan and everything is getting in order. The reality is that this is a shot in the dark. My doctor explained that treating CMML has had very very poor results. The odds of hitting the target in the dark are low... but as my doctor says, at least it is a shot! We are thankful that there is a medical chance that the LORD has given us. Though we know it is slim for complete success, we also know that with the LORD, our Creator and Redeemer, all things are possible. We pray that it will be His will to use these plans for my healing and restoration. We trust that He will carry us, no matter what the result. The LORD promises that He will go with us in life and in death; in that, we are confident.
I don't know what to expect in the next few weeks. I don't have many stem cells, I'm not producing blood, and I just don't know how my body will handle the chemotherapy. It will be a very different experience than the transplant in the fall. However, we go forward in faith. I'm packing up my hospital gear, my electronics, my pictures of my children and grandchildren, and other things. We are also getting our heads and hearts ready.
We have had a wonderful Spring Break week here. In the LORD's providence, March Break fell on the week before I go in again. Karen and Andrea were around most of the week. Michael and Rachel and their boys came from Tuesday-Saturday. Jeremy and Sarah visited throughout the week. My sister, Pat, came from the West from Wednesday-Sunday and we were able to spend time with her; what a special gift that was! On Friday, David and Bethany joined their siblings for a games night at the Mulder farm. That night, Barb and I were able to be together with my dad and siblings at Clarence and Irene's, which was a special time. We've had a lot of contact by phone and messages from our family and friends, which has been encouraging and much appreciated. On Saturday, the kids were home here at the farm. We had a wonderful day together - complete with race cars with the little boys, games of rook, chess, and stock ticker, bowling with all the boys, and tons of food. We had time to talk, encourage, reflect, and seek the LORD's blessing as we look ahead. We gave thanks for the good gifts God has given us.
We are not sure what the next weeks will hold, but we will do our best to update family and friends via this blog.
At dinner devotions on Saturday, we read from Psalm 138:7-8.
Though I walk in the midst of trouble, You preserve my life;
You stretch out Your hand against the wrath of my enemies,
And Your right hand delivers me.
The LORD will fulfill His purpose for me;
Your steadfast love, O LORD, endures forever.
Do not forsake the work of Your hands.
Prayer Requests
1) That the LORD will prepare not only Barb and I, but all of our children and loved ones in the days and weeks ahead, that we may be strong in the LORD and trust in His promises.
2) That the LORD will use this process for my healing.
3) For strength and peace, as we go into the hospital on Tuesday to begin.
18 comments:
We continue to pray for strength and peace for all of you, and that God will bless this treatment for your healing.
Will and Christina Dokter, and family
We continue to pray for you and your family. May you feel God's nearness everyday.
We will pray for peace and strength for you both and the children as well. We will also pray that the LORD will bless the doctor's plans and bring healing through them.
Clarence and Gonda
The Bryan family continues to pave the way with prayer for you, your family and for your doctor's plans. We know in His knowledge surpasses understanding and His love is endless.
Richard and Barb and family,
we continue to uphold you in prayer daily, to think of you and yours a whole lot and know that our God is faithful, awesome and will continue to grant strength to you all, at all times and in all circumstances.
Hugs from Hamilton
Timothy and Danielle deVries
We have a Mighty God who can do all things! We also have a Faithful Father who works all things for the good of those who love Him. May you continue to rest in that confidence as you live day by day in faith, trusting His promises, His might, His faithfulness..... We continue to follow your blog and are encouraged by your testimony; we also continue to remember you all in prayer! Sincerely, James and Miriam Slaa and family, Smithers, BC.
Richard and Barb,
Your faith is a shining example for all of us. I admire and appreciate you and you are ( and will always be) an encouragement to me in my daily walk with God. May the Lord bless you and keep you.
Gail
"The LORD will fulfill His purpose for me;"
This very verse was so important to me when I went through a stem-cell transplant in 1999 for Non Hodgkin's Lymphoma. My prayers are with you. May God be with you and strengthen you.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Praying for hope and endurance for you and your family.
Oh where to start. What an awkward place to be, but yet you were chosen to be in this uncharted territory....and as you continually say, God will go with you, His rod and staff will comfort you. And praise God that Clarence is willing to go through this with/for you. Thanks for sharing. Continually praying for you.
TomS
May our faithful Father continue to grant you and your family what you stand in need of. May He also continue to be glorified through your blog. We will continue to keep you and your family in our prayers.
Praying for you and your family. God is our refuge and strength, a very present help in trouble.
Mary VanDoodewaard
Richard & Barb and Family
Thank you for your testimony all through your blog. The LORD go with you in the weeks to come. Praying for Gods guidance for the doctors. Hebrews 4:16 Let us then with confidence draw near to the throne of grace, that we receive mercy and find grace to help in time of need. Henk & Els
Dear Richard and Barb and family:
Our thoughts and prayers continue to be with you. Thank you for your testimony of faith in our Lord and Savior. Your blog has been an inspiration to all of us. You are truly living the words of Lord's Day 1. Our Father in heaven is watching over you. May He give you the strength, courage and peace you need in the days ahead. Our prayers will be with Clarence as well.
With Christian Love
Roger & Linda
Dear VanderDeens,
You and your family are being prayed for often (even in Iowa). Your blog has been very encouraging to me. The words of this hymn by Annie Johnson Flint became very comforting to me as I faced health problems. I just wanted to share them with you.
HE GIVETH MORE GRACE
(1) He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials He multiplies peace.
Chorus: His love has no limits,
His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.
(2) When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father's full giving is only begun.
Chorus: His love has no limits,
His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.
(3) Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.
Chorus: His love has no limits,
His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.
Praying that you will continue to know the endless grace or our heavenly Father.
Our God is good and perfect, God is our provider and healer who is not limited in ability or resources. God's love surpasses our human understanding and far surpasses our human ability to love or show love. Appreciate all of your servant leadership as you go through this trial, sharing and pressing forward full of faith and confidence in Gods grace, mercy, compassion, faithfulness, ability, providence and desire. May God bless, heal, strengthen and direct you and your family. Thanks for your witness and example, may all those touched by your strengh and confidence in the most high God grow towards the light, the way and the path that leads to righteousness and eternal life. Life more abundantly, to God's glory. with prayers cousin Ron and Laura
My eyes are weary with looking upward. Be gracious to me, O Lord, for I am languishing; heal me, O LORD, for my bones are troubled. My soul also is greatly troubled. But you, O LORD - how long? Turn, O LORD, deliver my life: save me for thesake of your steadfast love. My heart is in anguish within me; the terrors of death have fallen upon me. Fear and trembling come upon me, and horror overwhelms me. And I say, "Oh, that I that I had wings like a dove! I would fly away and be at rest. You need to persevere so that when you have done the will of God, you will receive what he ahs promised. Our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ. Our blessed hope, the appearing of the glory of our reat God adn Savior Jesus Christ.
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