Lists or Phin's BMT: What we know right now

A week and a half ago on a Tuesday, we had a teleconference with Phin's Future Bone Marrow Transplant team. Even though I had ransacked online medical journals and read everything I could find on BMTs, and interrogated willing parents of transplant recipients, it still felt hard to hear the potential side effects and consequences of undergoing such a dangerous, yet potentially life-saving procedure, out loud. Sobering, really.

For Phin's kind of cancer--AML--there are two options: chemotherapy for what is deemed "low risk" (his cytogenetics, how the cancer presented, and how he handled treatment dictated this at first diagnosis); chemo AND potential bone marrow transplant for what is deemed "intermediate" (depending on patient cytogenetics, how and where the cancer presents, patient response to treatment), and "high risk", which is always intended for transplant because the genetics of this particular kind of AML do not respond long term to chemotherapy treatment only. When someone with AML relapses, there is only chemo and BMT for a cure.

A BMT requires wiping out Phin's own bone marrow (the stuff that makes all of the blood products and cells throughout his body: immune system, all of it) and infusing someone else's bone marrow to take over and replace it. It's like firing the original guy in there because he's seriously messing things up and replacing him with someone equally as capable but, hopefully, better at doing what he's supposed to do. 

When we were early-learners in this field of cancer-patient-parenting, I naively misunderstood how "last resort" a bone marrow transplant actually was. I assumed that pediatric cancer patients moved to BMT when/if chemotherapy alone did not cure the child of leukemia or lymphoma. Imagine my astonishment when another parent of a leukemia child emphatically "no no no no nooooo-ed" me when I asked if a BMT was the next step in the journey to cure her child's ALL. "A bone marrow transplant is the very last ditch effort at a cure for him," she'd said. "Thankfully, we have a list of other options first." 

Thankfully we do have a list of other options for ALL and other kinds of pediatric cancer. Unfortunately, because about 500 children are diagnosed with AML a year in the United States, and only a few thousand globally, not much research into other options to save these AML-afflicted babies has been done, leaving us with a list of only two: chemotherapy OR BMT. Unfortunately, we do not have other options for AML.

Phin has no other options. This is it. 

We knew going into this relapse that some of the BMT dangers are the following:

Infections, 

Graft vs. host disease (this is, basically, the original guy in charge of operating Phin's bone marrow and the new guy duking it out in there to decide who gets rule over Phin's bone marrow; the results of this can wreak havoc on Phin's body, collateral damage, they might say), 

Organ damage, 

Graft failure (aka: it didn't work and the new guy did not gain control and was, instead, kicked out by the old), 

Relapse despite transplant, 

Sterility, 

Future physical and mental health ailments,

Death.

On paper, this is a list. One of many lists we've read in the course of Phin's treatment journey. Each time he gets a new chemotherapy, we request the list on the treatment he's having. The list is an information sheet that gives us a general rundown of the drug, what it looks like, how frequently it's given, what the most common side effects are...etc. For example, this round, Phin had a chemotherapy called mitoxantrone. It's a bluish color. It causes his blood counts to recover more slowly than past chemos he's taken. It has a series of potential side effects, including yellow eyes, irregular heartbeat (they gave Phin a second drug to protect his heart while he had this one), mucositis and mouth sores (we've also been using Magic Mouthwash as a prophylactic to ward this off), hair loss... Our favorite of the side effects was green pee (Dr. Pendleton, if this blog finds its way to you, Phin wants you to know: "Yes, it's green!").

Phin with Bri, an AML/BMT survivor/hero

                                        

The list for the BMT was also a list until we spoke to the team and it became a hard, sobering reality. Among the many things we were told, these were the ones that were hardest for me to hear out loud: 

Phin will most likely not be able to have his own children after this. They have no way to preserve fertility in pre-pubescent boys yet. Studies are being conducted, but science hasn't gotten here yet.

Phin may still relapse again after this. In fact, about 40-45% of those who survive a BMT relapse.

BMTs are 65-70% effective, given the historical data we have to work with. 

Phin might not survive this. 

When we got off the Zoom call with the Atlanta team, my father and Dustin and I, we hadn't heard anything we didn't already know, but the weight of these words coming off the page and lingering in the air around us clung like a weighted-blanket of a shroud.

It's taken almost two weeks for me to write this post, to find the hopefulness and good again, to commit words to a page, but I can tell you this: these are the things I keep reminding myself when the BMT team's words echo in my mind:

Phin is young and has, so far, had minor repercussions from treatment. He's had time to recover from his first battle with AML. He's in as good of shape as we can hope for facing down a BMT.

If this BMT doesn't work, and as long as his body can fight, Phin can have another, and another, and another. I have read about and talked with people whose children have had 2, 3 and, even, 4.

We personally know at least two young adults who underwent successful BMTs, one of which had AML just like Phin

As of today, the girls' HLA tests are back and in Atlanta being analyzed against his HLA markers to see if either one of them is a match.

Despite not knowing about his sisters yet, Phin has TEN good matches in the National Marrow Donor Program registry right now. Stop. Go back and read that again. Phin has TEN good matches in the National Marrow Donor Program registry RIGHT NOW! By "good", I mean they've culled a list of potential matches (we're told there were about 30-40 actual matches) down to these ten and have asked them to take part in more testing. They have willing participants from this list. In addition to the HLA markers (they look for ten markers--proteins found on cells in a person's body) that they need to match as many of as possible, they're looking at age, BMI, medical history, blood type and gender to determine his best match. The BMT team feels confident about what they've seen from this list so far. A sibling donor is usually the preference, but this list of ten is promising.

We won't know much more on the BMT front until more results from potential donors, our girls, and Phin's upcoming bone marrow biopsy come back. We are in a holding pattern right now with little to report beyond some low-grade fevers, some pain in his groin, the expected need for blood product transfusions. Please pray the pain and fevers resolve and amount to nothing more than his marrow trying to flicker back on; we do have an X-Ray scheduled for later today to see what's going on.

Stay hopeful, Phin Phans. Be comforted by my list that serves as comfort to me. Encourage people to keep getting on the NMDP registry and, more importantly, to be ready if called upon to donate. We know of another little girl fighting AML in need of a BMT who does not currently have a match on the list. We are astoundingly blessed to have these ten options. We are so grateful and fortunate. Not everyone is so fortunate. Please keep signing up and encouraging everyone you know to do so. Pray and lift up these ten people who might be the cure for our son, that they will be brave and generous enough to follow through with all that's required of them to be Phin's life-saving donor.

If you need just one takeaway pick-me-up after reading this post, I leave you with the number TEN!

Phin and his sisters during a brief visit

-Neesha