So many have been following along with the twists and turns of Logan’s cancer fight since he was diagnosed last August, and more recently received his transplant in March. It has been awful, and right now the path forward is more perilous, complex and challenging than it’s ever been. That is the reality, despite the fact that Logan has been in a great mood and feeling good lately. He is so adorable and insightful. As always, he is cracking up and delighting anyone who walks in his room. His resiliency has awed all who meet him. And despite now being in the hospital three months, he has complete optimism about everything, making plans for when he gets to go home. But he is oblivious to how difficult this has all become, and it breaks our hearts seeing him as happy as he is while knowing what we know.
Yesterday, we met with Logan’s principal doctors from each division of his care: oncology, one from liver/intestinal transplant, and one from the bone marrow transplant group. Each of these three disciplines are an important part of Logan’s medical picture. And since the transplant, they have each in their own way turned out to be a disaster.
To start with oncology, the goal of the multivisceral transplant was to completely remove the cancerous cells in Logan’s body. That did not happen. His AFP marker has started to rise again, even with the last round of chemo that brought it down as low as its ever been. That indicates there are residual cancer cells hiding somewhere in Logan’s body. But they’re still miniscule enough that they cant be visualized on scans. With Logan’s bone marrow being wiped out after the last round of chemo, we are not able to do any more chemo, thus there is no way currently to prevent those cells from propagating. That means there is nothing to do right now but wait, knowing there is cancer that wasn’t removed.
Next, the multivisceral transplant. If you’ve been following along you know that the donor intestines have been extremely problematic. Most notably, a week or so after the surgery there was a perforation in the intestine and the entire organ looked compromised to the point of no return. Well, over time it did get better and the organ was “saved.” But Logan has continued to experience bouts of GI bleeding that are very dramatic, typically when his platelets are low. The GI team did a full endoscopy, colonoscopy and ileostomy on Logan this past Monday to visualize as much of the intestine as possible. And things looked pretty normal. But that means there is no clear reason as to what has been causing the bleeding. It is maddening and has us on constant edge that he will soon have another serious bleed. We’ve also yet to fully test his new organs out as he has remained on TPN these past 3 months since we have not been able to transition him fully back to g-tube feeds.
And then there is bone marrow. This is a problem we didn’t even know we had, but has quickly emerged as the scariest and most pressing issue by far. As I mentioned in previous posts, this last round of chemo knocked out Logan’s bone marrow production and it has not recovered. For all intents, he is “aplastic,” meaning he’s not producing white blood cells. White blood cells are needed to provide immunity, create platelets which clot the blood, and a bunch of other things. While he remains as he is, he is prone to infection that his body won’t be able to fight. It is an untenable situation.
You’ll recall that in the last couple weeks Logan started a treatment that was intended to wipe out excess plasma cells from the bone marrow and hopefully allow for good bone marrow to grow. It is still too early to definitively say if that will yield any positive results. But it’s based on the assumption that Logan has some stem cells in his bone marrow that can grow once the plasma is cleared. No stem cells were actually seen in the biopsy they did, and without them, no bone marrow will grow even if the plasma is removed. In short, while it was worth a try and still might yield a result, the doctors aren’t optimistic.
If Logan’s bone marrow doesn’t start to regrow over the next week or two, there is one move left on the board to try to save his life. And it is one that the doctors are clear would be extremely risky for Logan, and quite honestly, would not have a good probability of success. That is to do a bone marrow transplant. Given Logan’s underlying infections, the “conditioning” therapy needed to clear the body of residual immunity and set the stage to accept the donor stem cells might create a cascade of quick and immediate horrible reactions. So too the reaction of introducing a donor’s immune system into the quagmire of how it would not only react to his own immune cells, but also those of the transplanted donor organs. There is not really a comparison group to compare with to even try to predict what the odds of success would be. But this is a highly risky procedure under the best of circumstances. And Logan’s medical picture provides so many extra variables that would theoretically complicate things that is hard to imagine all the different things that could go wrong. But if it is the only option left, we’ll have to try it. To that end, Becca, Riley and I had our blood tested today so they can do HLA testing to determine who might be the best bone marrow donor for Logan. Those results should come back in about a week. Around that time might be when we have to decide whether to press forward with trying the bone marrow transplant. I think a viewpoint among some of the doctors is that it would be very difficult to put Logan through it, and might advise against it. But the countervailing view is that if there is some possibility of success, however small, then it’s worth it.
As we wrap up this solemn update, I am asking all of you to channel every prayer medium available. We’ve been so moved by the outpouring of love from strangers near and far who have recently joined us in supporting Logan and praying for his recovery. I don’t think it’s an overstatement to say that what we desperately need right now is a miracle. You all have helped reinforce Logan’s will to fight and given him so much strength to withstand the daily tortures of his care (blood draws, harsh medicines, surgeries, anesthesias, being stuck in a hospital, tethered to an IV pole…). Please continue to pray fervently for treatment to work and for his miraculous recovery.
We will continue to pray for that miracle, we have several additional prayer groups working as hard as they can and we will not stop. Love you all so much our hearts break for all of you, and hope the miracle happens and we can put this all behind us. Logan is so lucky to have you both for parents/ aunt sandy and uncle richard.
We cannot imagine the anxiety and stress you are experiencing. Please know our thoughts and prayers are with you at all times and we believe in miracles. Logan is the sweetest guy and so loved by all.
Oh Lord Jesus , Please wrap your arms around this sweet boy and his family. Give them all the strength they need to get through this.
Lord God provide a MIRACLE, one that only you can provide. Let Logan rest on a cloud of your Love
Thank you Jesus for hearing our prayers.
My prayers and thoughts are with you all and have been this whole journey. Sending strength ❤️🙏. Julie Katz -Salem