Wednesday, August 21, 2013

BMT FAQ: Day -6

Last day of radiation! Sam was, as usual, a trouper. The radiation oncologist (who looks like James Bond, by the way, a fact that has not gone unnoticed by Sam) told me that by the third day most patients are tired and crabby. Guess what? His experience played out for Sam too. I'm sure it has something to do with the ridiculously early hour for each morning's treatment. But that's just my opinion. Either way, he bopped along to his playlist and handled it quite well. They really loved him down there. It must be strange to work with a kid for only three days and to not know the outcome of the treatment....

There was a bit of nausea today, a bit of eating, a lot of resting, and overall just a quiet day in the hospital. Sam is looking forward to sleeping in tomorrow morning! 
Now, for a few of your burning questions about BMT -- I will try to answer as many as I can tonight and perhaps add some more tomorrow. Of course, I'm not a doctor, and I don't even play one on TV, but I have learned a lot from Dr. M, who insists on teaching his patient families as much as possible, and I've learned a lot from reading and watching and asking questions. (What? Me? Ask questions?)
How does it work? As in, is all of Sam's bone marrow going to be gone and the new marrow replaces it or does the new marrow just take over and reproduce, eliminating the old, bad bone marrow?
The purpose of a bone marrow transplant is to basically strip the body of its own marrow and start over, from scratch, with someone else's marrow. It's like a re-boot using new system software. The regimen that Sam is undergoing right now is called "conditioning" -- it is designed to strip the marrow (and hopefully all the remaining leukemia cells as well) in preparation for the new marrow. Unlike previous chemotherapies, which stripped his marrow but enabled it to grow back, this is a permanent deal. If he didn't get the transplant as scheduled, his own marrow would never re-grow. There are two ways to condition -- one is through high-dose chemotherapy alone. The other is through a combination of total body radiation and high-dose chemo. Our doctors believe that the radiation has a better chance of knocking out the remaining ninja leukemia, so that is the route they have chosen. There are significant long term side effects to radiation (and to the chemo route as well) but we are hopeful that those long term side effects will be far more manageable than any recurrent leukemia. So it's a risk we've agreed to take.

I received this in the mail today....and I'm hopeful that we will need it.

How does it work? Do they put the cells straight into the bones?
Supposedly, it's very boring and anticlimactic. The marrow will actually look like a regular bag of blood and go into Sam through his central line just like any other transfusion. He will receive benadryl beforehand to make sure he doesn't have any reactions (more likely to the processing chemicals than the marrow itself) and so it's possible he will sleep through it. It will take 10-20 days for the new marrow to engraft, during which time Sam will be most at risk for infections and other side effects. We're expecting a bumpy ride for the first 30 days at least. He'll be on a whole boatload of meds (you will see pictures of his enormous IV pole) to keep his body happy and to prevent infection. The plan is to actually insert a second line, a PICC line, to give them even more ways to send meds into Sam's body.

If you want to share information about Bone Marrow Transplant with kids, there's a great video on the BeTheMatch YouTube account. It's in two parts: Part 1 and Part 2. It's actually about a kid named Sam!
Why aren't you using your matched sibling? Who is the donor? Is it a perfect match?
Right now, a 26-year-old male somewhere in the United States (let's call him SuperMensch) is preparing for a surgical procedure, probably on Monday. I hope that someone, somewhere, knows what he is doing and is giving him a standing ovation. I hope that his friends are cheering. I hope his boss is giving him paid time off. I hope that his parents and grandparents are kvelling. I hope he is telling his story and encouraging other people to get swabbed. I hope the local news is making him a celebrity and I hope they give him the keys to his city and invite him to be the Grand Marshal of their town's biggest parade. Maybe he is even reading this blog (okay, that's doubtful). I hope that he knows that he is going to save my child's life.
Yes, we had a matched sibling. By taking Sam to transplant with a significant leukemia load, we are actually hoping for graft-vs-host disease -- we want the graft (the new marrow) and the host (Sam) to have a little fight. We hope that the secondary front of this war will be graft-vs-leukemia -- we want the graft (new marrow) to fight the leukemia (ninja) hard. The slight mismatch (antigen A) between Sam and SuperMensch will encourage this even further. It may make for a much rockier transplant, but our doctors are prepared with some incredible tools including a whole army of trained T-Cells that are ready to be called up. (This part is a little too blurry for me to explain to you, but you med-types may want to know that he's having a T-Cell Depleted transplant.)

Does a BMT recipient take on the DNA/genetic material of the donor? retain his own? or is there a mix?

I understand that Sam's blood will have the DNA of the donor but the rest of his body will not. I believe that his blood type will change to the donor blood type. It's a Law and Order episode waiting to happen. At some point I will have to explain about chimerism, a test that they do to see how much of the marrow is "donor" and how much is "Sam." (Oh wait, I just did!)

Throughout the treatment process have the doctors given any information on what Sam should be eating, or is any eating considered good? (I'm asking because you hear so much about "anti-cancer" foods and wondering whether the doctors buy into that, or if it's just pop nonsense)

The doctors are very concerned about Sam's nutrition but at this point and throughout most of Sam's process, they've been less concerned about what he is eating and more concerned about how much. I do believe that there is a lot of great stuff out there about foods that can support and help with treatment, but it can be a little tricky to convince a 7 year old that he should really be eating spinach and pomegranate juice when he'd prefer macaroni and cheese. We have felt very lucky that when Sam has been off treatment or has had good counts, his eating has returned to his normal, balanced and healthy diet. It's probable that Sam will be on TPN, Total Patient Nutrition, for much of the BMT process. It takes a lot of pressure off of us to cajole him to eat when he just doesn't feel like it, and it makes sure that he gets enough calories and nutrients to sustain him.

What's going on with the rest of you? And how's your nose?

The rest of us are doing okay. We are still living at the Ronald McDonald House and have temporarily enrolled the kids in school in Milwaukee. We are feeling so blessed to have found a place that will be warm and nurturing and hopefully perfect for our family. There's even a place for Solly on the same campus! Hopefully no one will bring home any germs (!) and everyone will do alright in their temporary-but-still-very-real school.

My nose is healing nicely and the bruises on my face make me look like a tough guy...which of course we all know I really am!

Can Sam have visitors? What about packages? How come you aren't wearing masks? How come Sam isn't masked?

At this point, Sam can still have SOME visitors -- we are trying to limit it to a few people including, of course, family. Healthy healthy healthy is the mantra of BMT. We don't want any viruses intentionally walking their way into Sam's room. It's inevitable that something could be anywhere so we are trying to be hypervigilant. At this point, his counts are still pretty good and masks aren't needed. I know there will be more precautions taken as we get deeper into the dangerous times. Sam can receive mail and packages, but remember that things need to be cleanable and bleach-wipe-able...or washable or whatever. Nothing too dusty or dirt-inducing...

And what else can we do to help?

There is a fund sent up at Am Shalom to help with our expenses. We are so grateful for this, because it is truly enabling us to spend all the time we can with our kids, and in particular with Sam. So thank you. You can contact Am Shalom directly -- 847-835-4800 or -- to find out more.

We have so appreciated the way that you stepped up to help us help the Ronald McDonald House (and last year the clinic!) that we thought we'd offer another opportunity. I spoke to the Nurse Manager and she expressed two small needs (I told her to think bigger so she's working on it). They can no longer provide foam mattress pads to families but they also only have space to store a few of them. And of course, many people do bring their own. But it would be so nice to have half a dozen on hand. Also, there are no hangers anywhere left on the unit! As fall rolls in and coats come out, it is so helpful to have hangers. So in addition to rounding out their movie list (a favorite pastime of ours, you've noticed), I made up a wish list that included these small needs. The stuff from this list will be shipped directly to Sam at the hospital...thank you.

Any other questions?


  1. We appreciate you taking the time to catch us up on all the doings up there. You are in our thoughts, our prayers, and always in our hearts. xoxoxo

  2. Thanks for the update and for the interesting medical info.

    xoxo from NYC,
    ~ Jane.

  3. Prayers for Sam and SuperMensch. I wish he could know what an amazing kid he is saving.
    I got so choked up just thinking about this young man being so selfless and amazing.