Next Steps
Morning Team Lucas-
We have been asked by many what’s next for Lucas. The standard is to repeat the last regimen that achieved the 0.8%, and then shoot for a number that is lower and definitely less than 1%. We are also staying on top of infection and being really careful with the kids, especially Dylan this holiday season. In completely unscientific Mommy fashion Erin called Debbie who was watching Dylan and said “no sugar” after she heard the response. I was like “no sugar?” thinking she was on to something that I had not read about, “yeah she has to be completely healthy.” Pretty cute rule that mommy made up, and I look forward to enforcing it during the Advent season :)
Geeking out with Brian
The protocol Lucas was on last month was presented this past weekend at the American Society of Hematology conference in Tokyo, Japan.
The company Astrellas wrote about Gilteritinib, the FLT3 Mutation inhibitor in combination with Venetoclax and Azacytadine.
I use Google News app with the keyword “Acute Myeloid Leukemia” and constantly am reading about updates in the field. There are a lot of cool things going on in medicine right now, some people are even working on an AML Vaccine.
It was really cool to read the results of Ven+AZA+Gilt, because the median patient age was in the 60s of the study. AML is super-rare in kids. I told my sister that maybe 3-5 kids have the identical genetic mutations that Lucas has, globally.
Greetings from India
I did get contacted by a Dad in India, who’s son has the same genetic mutations as Lucas the other day on Facebook Messenger. I closed my FB account as Brian Gourley earlier this year because I couldn’t take it any more, but my new alias is great, because its under the radar and all it does it focus on kicking cancers a##. We compared treatment plans, his was one from Zurich. I told him about VEN+ AZA + Gilt and that it worked for Lucas. All this is done via a private group called Momcology, they let dads in too, but its mostly moms supporting moms.
Next Steps
So, Lucas Bear will have the same regimen as last month. It starts tomorrow. Erin will be going home to Austin to hang out, regroup and then bring Jack and Dylan back to Philly. We need to be really careful how they get up here, so if anyone has ideas please let us know. We definitely are not driving again, that 50 hour round trip was what they call in Boston, a pissah.
Allogeneic Stem Cell Transplant
Speaking of pissahs, our little Dylan is in waiting. We are waiting to hear from the transplant team at CHOP for dates, but we think we should finish this cycle late December, and if everything goes to plan the transplant process should start in early January. Transplants are their whole own deal, your care literally shifts to their team. They actually become Lucas’ primary care, so Dr. Aplenc will hand Lucas over and they will start their work.
Prayers
God please keep Lucas free from infection this month.
Let Lucas marrow remain 0.8% or lower of minimal residual disease
Let Lucas spinal fluid remain clear
Please keep his spinal fluid pressure low and prevent symptoms from hi pressure
Safe travels for Erin, Jack and Dylan
Thanks
I went back to St. Patricks chapel yesterday, me, the non-official Catholic that I am. I told St. Patrick that while I don’t pray to saints (I pray to God and Jesus), I did want to talk to him, and that I would like to get to know him better and that I hope that Lucas has a life that is as great as his. I told him that I wanted to live the rest of my days in gratefulness, letting go of the petty things and focusing on what matters. I told him God had helped us out and that I was going to go home and learn more.
I thank Team Lucas for the prayers on Sunday night. I thank everyone for continued vigilance and keeping their feet on the gas, we still need you. Help us stay in the light, its there, its always there, its just hard to always find it.
