For those praying…the bone marrow transplant has been called off, as they discovered David is not in deep remission as they thought. They will be proceeding with a trial similar to one that seemed successful two years ago, involving CAR-T cells.
That’s the short of it but the long of it is better explained by Jacob, David’s father.
Nevertheless, Thank you gentlemen for your prayers, this is a really sweet family and poor David has suffered so much. They would appreciate your continued prayers.
David’s oncologist here in Seattle just called with the results from yesterday’s lumbar puncture: Relapse. Blasts were found in his cerebral spinal fluid with genetics consistent with the cancerous mass in his kidney. Since the cancer is back, the bone marrow transplant is off. Proverbs 19:21: Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.
Last Thursday, he received a dose of intrathecal methotrexate as part of preparation for transplant. When they give intrathecal chemo, they also take a sample of cerebral spinal fluid. They fount one atypical, suspicious-looking cell. The pathologist analyzed it and determined that it was not a blast/leukemia. Out of an “abundance of caution,” they offered another spinal tap, just to be sure. He had it yesterday. Everything has been moving full-speed ahead, all but certain that David was in deep remission.
Bone marrow transplant is best when the recipient is in remission. That’s why we were pushing forward despite the COVID-19 scare. It appeared to all involved, that David was in deep remission. There was no evidence of leukemia at all anywhere we looked.
Before we came to Seattle, David was scheduled to be starting conditioning chemo/radiation for his transplant this week. However because it was delayed until early April due to COVID-19, we decided to do some extra, precautionary chemo. We were debating whether or not we should even put chemo into David’s CSF. We almost didn’t. That extra, unplanned methotrexate is in and working immediately upon finding the relapsed leukemia, hopefully slowing its spread. Also, the timeframe of the delay may have been helpful in allowing the disease to grow to a point where we would find it. He didn’t have any B cells in his CSF on any lumbar puncture since early 2017.
Transplant, we were told by the team here, has about a 20% event-free survival rate if it is performed while the patient isn’t in remission…like we were about to do without knowing it. That is an 80% chance of the cancer returning. Compare that to about 70% event-free survival quote with it in remission. So, God used COVID-19 for David for good. This is just how God works. Just like in Gen 50:20, where God used the wicked intent of Joseph’s brothers who sold him into slavery to save their whole family. And Acts 4:27 where God used the most wicked event in all of history (the murder of the innocent Son of God on the cross) to accomplish the greatest good imaginable, salvation for all who believe. This does not make COVID-19 good, but it shows how our all-powerful God uses even the worst things for good. Nothing—not one single virus, not a single molecule—will not bow to His will. Whether we see how He is working it for good or not, we must trust Him.
So while we would not have picked for David to relapse, we are so thankful that we found out about it. And to add to this, we have options. One of the main reasons we came to Seattle Children’s for the transplant was because they were the ones who manufactured David’s original CAR-T cells for the PLAT02 trial in 2017. They still have some of David’s original CAR-T cells left over, frozen. Also, they have a trial going on now called, PLAT03. We will be discussing in the next couple of days enrolling David into this trial to try to get him into remission. He would receive the same CAR-T cells that he got in 2017, but the trial also involves periodic boosting of the CAR-T activity by infusing another genetically modified T-cell that expresses the CD19 antigen (it pretends its a B cell) that the CAR-T cells are hunting.
This obviously is a complete change of our plans. But for the time being, we will still need to be stay in Seattle to get the new CAR-T process going.
Thanking God for provision of CAR-T options and for protecting us from bone marrow transplant during active disease.
- For protection from full-blown relapse while we pursue treatment. We will likely be starting some light intrathecal chemo to keep the cancer at bay. We want to leave enough for the CAR-T cells to have something to kill, but not so much that we have significant consequential return of the leukemia. We caught it early.
- For successful manufacture of new T-cells. The lab that makes these is very stressed like so many other places by the limitations that the COVID-19 pandemic is placing on industry. They are working around the clock with a skeleton crew in order to maintain extreme social distancing.
- For manageable side effects. One of the main severe side effects of CAR-T infusion is neurotoxicity, which in some cases has proven fatal. David is a unique case based on his history and leukemia presentation within the brain tissue not just in the CSF. Last time we did CAR-T he lost the ability to speak for a day or so, but nothing permanent or severe. We don’t know how he will respond this time.
- For successful treatment. It is our prayer, our sincere request that David would be healed. We would love if the new CAR-T infusion could occur and
- For provision. Our plans and timeline are obviously in great flux. This makes getting long-term rentals tough since we don’t know what we are committing to and where we will have to be. In our favor, COVID-19 has caused rates on hotels and short-term rentals to drop, but we still have to identify and get a home in the right location at a decent price (especially since this will probably be many months and my work opportunities will continue to be limited due to COVID-19 and David’s treatment). We would really prefer to stay in homes instead of hotels. This is a small thing, but something on our mind as well. The one that we are in this week is wonderful at an extremely discounted price for what it is. Thank you, Lord.
- For protection from COVID-19. We are still in a major hotspot for COVID and potentially at higher risk with both Jacob and David having compromised immune systems. Obviously it would be best (probably necessary) for David to remain coronavirus-free enter upcoming treatment.