The details of this post will probably be somewhat boring to most of you, but it was helpful for me to get it into writing for my own thought organizational processes and also to help loved ones better understand the decision we're facing.
On Thursday Spence went in for his clinic visit before his bone marrow biopsy/spinal tap and the doctors were raving about how wonderfully Spencer was responding to treatment. The doctor then told us that she had been discussing the specifics of Spencer's case with doctors at several other institutions and that the feedback was mixed about what treatment was best in his situation. Although most of the institutions (including his own oncologist) still recommended proceeding with transplant, but because of how well he was responding to treatment, some of the institutions our doctor consulted with thought that the transplant was too risky and recommended finishing the chemo without the transplant. Although we'd recently been nursing our own doubts about the transplant, we'd been going forward with plans trusting that medically this was the way we were supposed to go. With this newly expressed uncertainty from the doctor, we found ourselves hurtled into a complete conundrum as suddenly we weren't just faced with the choice of where to do the transplant, but also whether to do the transplant at all.
Since then we've been praying and immersing ourselves in medical research far over our heads to comprehend fully. Our emotions have gone back and forth as we realize that there's no easy answer to the question. Transplants are risky procedures with a somewhat significant mortality rate and a whole host of possible life-long scary side effects, but since they offer the best chance for a complete cure (60% without transplant, 75% with transplant), they are still recommended for intermediate risk patients like Spencer with an exact sibling match. If he didn't have a sibling match they wouldn't even be talking about a transplant at all. The drawback to not going forward with the transplant is that if the AML were to relapse, it is more difficult to treat the second time around and would involve more hospital time, more chemo, and a transplant anyway. Either way, we feel like gamblers who instead of making decisions about money, are determining the quality of our son's future life.
Then Monday we took Spencer to the clinic before we expected him to be readmitted to the hospital. There we were saddened and surprised when they told us that although Spencer was technically in remission (a loaded word that's not very meaningful with AML) after the first round of chemo, that his bone marrow results from Thursday showed some cells that looked suspicious. They opted not to readmit him while they figured out what how this potential setback could change the treatment plan. They sent Spencer over to the hospital for an echocardiogram to evaluate his heart function, since one of the chemos he's received has heart damage as a possible side effect and one of the new chemos they were considering using also lists it as a possible side effect. They just needed to make sure that is heart is healthy before they start him on a new one that could potentially damage it. We were definitely disappointed with this news.
Then we went back to the clinic first thing this morning to discuss the echo results and the full lab reports from Thursday and we were told that after sending his bone marrow results to a few other institutions (National Children's Medical Center and University of Nebraska being the two that I remember), that the suspicious looking monocytes in his marrow were declared normal. After breathing a HUGE sigh of relief, we learned that we're back to proceeding with the original treatment plan, which includes figuring out what to do about the transplant.
Although standard US treatment protocol for AML does recommend the transplant in this case, it is clear that medical experts' opinions are widely varied on the subject and Spencer's oncologist has assured us that there is no right or wrong answer for this decision. In fact in many parts of the world, including Europe, the standard treatment plans for AML have recently changed to recommending transplants after first remissions to only the highest risk patients (of which Spencer is not).
To say that the last few days have been a roller coaster of emotions would be an understatement. We are proceeding slowly and prayerfully, trying to understand the academics as much as we can, but more than anything, putting our trust in God that He will direct our paths in the best way for Spencer. We appreciate all of the prayers and fasts our family and friends are offering in Spencer's behalf, and in our behalf as we make this decision. We feel the power of those prayers and have the faith that the Lord will indeed direct our paths in this decision.
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UPDATE:
**************************
I know I use this scripture all the time, but we feel like it is especially apt right now as we make this difficult decision:
"Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. "
Proverbs 3:5-6
On Thursday Spence went in for his clinic visit before his bone marrow biopsy/spinal tap and the doctors were raving about how wonderfully Spencer was responding to treatment. The doctor then told us that she had been discussing the specifics of Spencer's case with doctors at several other institutions and that the feedback was mixed about what treatment was best in his situation. Although most of the institutions (including his own oncologist) still recommended proceeding with transplant, but because of how well he was responding to treatment, some of the institutions our doctor consulted with thought that the transplant was too risky and recommended finishing the chemo without the transplant. Although we'd recently been nursing our own doubts about the transplant, we'd been going forward with plans trusting that medically this was the way we were supposed to go. With this newly expressed uncertainty from the doctor, we found ourselves hurtled into a complete conundrum as suddenly we weren't just faced with the choice of where to do the transplant, but also whether to do the transplant at all.
Since then we've been praying and immersing ourselves in medical research far over our heads to comprehend fully. Our emotions have gone back and forth as we realize that there's no easy answer to the question. Transplants are risky procedures with a somewhat significant mortality rate and a whole host of possible life-long scary side effects, but since they offer the best chance for a complete cure (60% without transplant, 75% with transplant), they are still recommended for intermediate risk patients like Spencer with an exact sibling match. If he didn't have a sibling match they wouldn't even be talking about a transplant at all. The drawback to not going forward with the transplant is that if the AML were to relapse, it is more difficult to treat the second time around and would involve more hospital time, more chemo, and a transplant anyway. Either way, we feel like gamblers who instead of making decisions about money, are determining the quality of our son's future life.
Then Monday we took Spencer to the clinic before we expected him to be readmitted to the hospital. There we were saddened and surprised when they told us that although Spencer was technically in remission (a loaded word that's not very meaningful with AML) after the first round of chemo, that his bone marrow results from Thursday showed some cells that looked suspicious. They opted not to readmit him while they figured out what how this potential setback could change the treatment plan. They sent Spencer over to the hospital for an echocardiogram to evaluate his heart function, since one of the chemos he's received has heart damage as a possible side effect and one of the new chemos they were considering using also lists it as a possible side effect. They just needed to make sure that is heart is healthy before they start him on a new one that could potentially damage it. We were definitely disappointed with this news.
Then we went back to the clinic first thing this morning to discuss the echo results and the full lab reports from Thursday and we were told that after sending his bone marrow results to a few other institutions (National Children's Medical Center and University of Nebraska being the two that I remember), that the suspicious looking monocytes in his marrow were declared normal. After breathing a HUGE sigh of relief, we learned that we're back to proceeding with the original treatment plan, which includes figuring out what to do about the transplant.
Although standard US treatment protocol for AML does recommend the transplant in this case, it is clear that medical experts' opinions are widely varied on the subject and Spencer's oncologist has assured us that there is no right or wrong answer for this decision. In fact in many parts of the world, including Europe, the standard treatment plans for AML have recently changed to recommending transplants after first remissions to only the highest risk patients (of which Spencer is not).
To say that the last few days have been a roller coaster of emotions would be an understatement. We are proceeding slowly and prayerfully, trying to understand the academics as much as we can, but more than anything, putting our trust in God that He will direct our paths in the best way for Spencer. We appreciate all of the prayers and fasts our family and friends are offering in Spencer's behalf, and in our behalf as we make this decision. We feel the power of those prayers and have the faith that the Lord will indeed direct our paths in this decision.
******************************
UPDATE:
- We had a very fun bonus day with Spencer at home. Pictures of our adventures will come soon.
- Spencer was readmitted to the hospital this morning and is in room 510 (a few doors closer to the entrance from his last room)! Our new phone number is 703-776-4510.
**************************
I know I use this scripture all the time, but we feel like it is especially apt right now as we make this difficult decision:
"Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. "
Proverbs 3:5-6
9 comments:
Our prayers are joined with yours as to whether or not he will need a bone marrow transplant. And as you said Trust in the Lord.
My heart goes out to you as you face this major fork in the road. I have a friend here who was diagnosed with AML 18 months ago, and learning through this process with her has taught me that Leukaemia is really a very person-specific disease and that there is truly no one-size-fits-all treatment plan. Praying that you receive peaceful confirmation for the right path for Spencer.
Wow- you're facing quite the gut-wrenching decision! We'll be praying for your peace and guidance through this process.
My heart and prayers are with you! I will be fasting this weekend for Spencer and your family that you will have the peace and inspiration you need!
We will be praying hard that you can make the right decision in regards to Spence's treatment and that you can be at peace with your decision! HUGS to you!
Making those treatment decisions is so hard. It's just such a gamble sometimes. Erin was intermediate risk AML and we did NOT have a sibling match. We did not to a transplant and she has been in remission for 15 months and going.
We have 2 friends who had kids with AML intermediate risk, both WITH sibling matches that opted to NOT to transplant. If you'd like to speak to either of these moms, I could hook you up with their emails/phone #s.
Good luck with the next round! And, I am so thankful those "suspicious" looking cells were normal. It's such a relief!
As one who likes to research things like crazy when I'm making a decision, I can imagine this situation is very difficult since there's no right answer. We'll be fasting and praying for you to receive the inspiration you need to make this decision and feel good about it.
Wow! That's it. Wow. Lots of prayers and fasting coming your way.
One of my FAVORITE verses!! It is HARD coming to that fork in the road & not being able to know precisely which road to take. Continue in your prayers & find time to be still & really "listen" for God's direction. Sometimes life gets so crazy that it's hard to hear God amongst all the chaos. Lifting you all up & praying specifically for His will to be heard & felt by you for Spencer :)
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