Friday, September 7, 2012

What exactly is a BMT?

This is Karen, posting on behalf of my parents and siblings.

Over the past few months, we have been asked many times about Dad's 'surgery' and what exactly his recovery time will look like.  We have been on a steep learning curve for the past six and a half months, as we've learned what is all involved with leukemia and now a bone marrow transplant.  Let me try to explain the process to you, but please remember that I am in no way a medical professional :) and this is my simple understanding of what we're facing.

In simple terms, leukemia is a cancer of the blood.  Bone marrow produces blood cells and therefore, to treat leukemia, you need to treat the marrow.  Dad's cancer was discovered by a routine blood test where his white blood cells were elevated.  He underwent bone marrow aspirations where the doctors went into his hip bone and sternum (chest) to get marrow samples out of the core of his bones.

In the beginning, our doctor originally thought that Dad had Chronic Myelogenous Leukemia (CML).  Chronic means that the leukemia is not progressing at a rapid, aggressive rate.  We had discovered the cancer in the early stages which makes it more treatable.  Once the cancer cells start multiplying in massive amounts (called the blast stage), the hopes of successfully treating leukemia decrease significantly.  Myelogenous means the type of blood cell that is malfunctioning in the blood (the myeloid cells are cancerous).  At first, it seemed like CML would be one of the "better" types of leukemia to have as there were many trial medications that he could go on that would stop the cancer from progressing.  These medications had minimal side effects and the doctors assured us that Dad could live normally for years, before even having to consider a bone marrow transplant.  We were told that a bone marrow transplant was a last resort; it was a risky treatment with a very small success rate.  We were thankful to have this diagnosis, and Dad underwent bloodwork to confirm it.

However, we were devastated to find out in April that Dad's type of cancer is actually much rarer than CML and also much more complicated.  In his blood stem cells, Dad did not have the chromosone error they expected, which meant he did not have CML and all of the trial medications were useless for him.  He kept undergoing more testing and the new diagnosis was bleak.  The official title for his cancer is CMML -1, which in plain language, means that it doesn't fit neatly into a box and chemotherapy/trial medications/radiation will not stop or cure the leukemia.  The only treatment option is a bone marrow transplant or more accurately, a blood stem cell transplant.  Without a transplant, his prognosis was short - 1 to 2 years... just enough time for the cancer to go acute and take over.  We began the process for finding a family match and Uncle Clarence was named as our match in May.  What a day of rejoicing that was!

A bone marrow transplant is not a surgery, as many people believe.  It is actually a simple blood transfusion.  It's been described as quite anti-climatic after the days of heavy chemotherapy before it.  Dad goes into the hospital on Monday morning (Sept. 10).  A Hickman line (central line) is being inserted in his chest in the morning, and he will then begin receiving chemotherapy that will kill his own bone marrow and his cancer.  He will begin receiving anti-seizure and anti-nausea medication on Sunday already, as he will be receiving one of the heaviest doses of chemo a person can have.  He'll have four days of one type, then two days of another type, and then he'll have two days off for his kidneys to clean the chemo out of his blood so that the donor stem cells can survive.  Finally, on Sept. 18 (now known as Day 0 in our family), he will receive a blood transfusion of my Uncle's stem cells.

While Dad is undergoing chemo, Uncle Clarence will be receiving shots to cause his marrow to overproduce stem cells.  Stem cells are the basic young cells of the blood - they eventually develop into either red blood cells, white blood cells, or platelets.  Clarence will go to the hospital on Sept. 17 to sit on a machine (like dialysis) that will skim the stem cells from his blood and then send the rest of his blood back into his bloodstream.  His stem cells will be saved for Dad who will receive them as a blood transfusion the following day.  Eventually, the stem cells will find their way to Dad's marrow and engraft themselves there. 

The engrafting process takes time, which is why Dad will be in the hospital for a few weeks following the transplant.  The doctor explained that for Dad to go home, a number of things have to happen first: 1) engraftment (the new stem cells are settled in Dad's marrow and are starting to produce white blood cells which will give him a small ability to fight infection), 2) Dad's ability to drink and swallow, 3) no fever/infection present, and 4) no more than 3 blood transfusions a week.

What makes this process frightening is that your blood is also your immune system.  By killing Dad's ability to make blood, the chemo is killing his ability to fight infection and disease.  He will be receiving many blood transfusions to deal with his inability to make blood, and he will be in strict isolation to deal with his inability to fight infection.

Normally, when people think of transplants, they think of the worry of the body rejecting the new organ.  With a blood stem cell transplant, it is opposite.  The healthy immune system (stem cells) might reject Dad's body, rather than the other way around.  Dad will be taking anti-rejection medication so that the donor cells do not reject him!  However, in a way, we want Dad to get Graft vs. Host disease because it shows us that his new immune system is working.  The new immune system has to be able to recognize any lingering cancerous cells and attack them.  Dad's doctor explained that in a way, we will be replacing his leukemia with a new disease - Graft vs. Host disease.  The effects from the heavy heavy chemo will also last for quite some time following the transplant.

Even when Dad returns home, he will continue to be in semi-isolation for a few months.  Mom also will be in isolation, in a sense, as she cares for Dad and spends each day with him in the hospital and at home.  As children (but not our little ones), we hope to visit them as often as we can but we will be taking serious precautions before entering that hospital room.  One of the main reasons for this blog is to communicate with our community, as Dad will be unable to see many of you in person for many months.

Please continue to uphold our family in prayer, especially as we begin this journey in just a few days.  While we have a small intellectual grasp of what is before us and the tough road ahead, it is hard to always grasp with our hearts what the days ahead will be like.  It is easy to read medical stats and allow fear to overwhelm us.  May our strength continually be in our Saviour and our Rock!

"The Lord is my light and my salvation
whom shall I fear?
The Lord is the stronghold of my life—
of whom shall I be afraid?


For in the day of trouble
he will keep me safe in his dwelling;
he will hide me in the shelter of his tabernacle
and set me high upon a rock."

Psalm 27:1, 5

7 comments:

Anonymous said...

"Lord God Almighty I lift this family to you... to heal, strengthen, peace, all that they need and more . What I really pray for is a miracle, Lord. Richard is your child Lord and he loves you with all his heart soul mind and strength. We love you because You first loved us.... Lord please heal him completely, totally as You are the Great Physician. Thank you for these medical doctors here and give them Your wisdom in how to treat and heal him. Jesus, give this wonderful family your peace and strength in these months ahead. in your precious name I pray. Amen so let it be.

Danielle said...

Karen, you did a great job explaining things about transplant and bone marrow in clear and concise wording...praying with you and your family for healing and peace during this intense time - you are in my thoughts and prayers often

Sarah said...

I'll be praying for your family, and especially your Dad. Thankful for your faith in God even through the valleys.

Unknown said...

Thanks, Karen, for a clear and informative explanation of things.
Rachel

Brian & Aileen said...

Karen, thank you for sharing this; Uncle 3ichard and Aunt Barb thank you for being so open about your story and your faith. We are all in God's hands and your strength in all of this is a witness to what God can do and how He is at work. We are praying for the whole family as you journey together.

Rachel said...

Thanks for sharing this, Karen, in more simple terms. We continue to keep your dad in our prayers.

Marty and Rachel Speelman

Trish W. said...

Great job Karen in explaining this in simpler terms - it gives us a much better idea as to what is going on. The complexity of the whole situation is well laid out. We will pray that your dad will respond well to the treatment and that your mom will have the strength to cope with all that is expected of her.