Love for Noah
Unfortunately we just learned that Noah has relapsed and his leukemia has returned, just in the past few weeks. The relapse is in his central nervous system and will require immediate reinduction therapy along with specific chemotherapy AND radiation treatment to the nervous system and brain. There are risks of severe side effects with this treatment, but without it, he cannot win.
We are all in shock but we are doing everything we can to prepare Noah for another long battle and make sure he is in the best position to win. It's heartbreaking that just months after he was allowed to finally go back to school and do all the activities he's been waiting to do for years, he must go back into therapy. All the progress and treatment over the past 3.5 years starts all over again. More intensive and more dangerous.
First and foremost, we are asking for your prayers, positive thoughts, well wishes, anything. That is the most important thing!
We are starting this fundraiser to help with some of the costs involved in this very long process. We are still working to pay off the debts from Noah's first round of treatment as well. Cancer, especially leukemia that has such a long treatment cycle (years), is very expensive. While insurance will cover a big portion, there are several treatments deemed "experimental" which are not covered, in addition to sometimes 3-5 co-pays per week, plus specialized care, and anything to keep him happy and positive.
Any donation is deeply appreciated and will be put directly towards Noah's medical expenses and any specialized treatment we can get. I would be forever grateful, even if all you can give is a prayer or positive thought.
We will get him through this -- again! Thank you so much for your love and support!
The Keck Family
We got home just last weekend and are glad to be back! Five to six weeks sure can feel like an eternity.
Noah's last week in Dallas was a busy one, full of tests and procedures to make sure he was healthy and that his CAR-T cells were alive and working as intended.
He has an LP (spinal tap) and bone marrow aspiration performed early in the week along with a lot of regular labs.
As before, I am very happy to report that he is still in an induced remission and there is no sign of active disease. We did not expect this to change, especially with the CAR-T cells now circulating through his body.
Regarding the CAR-T cells, they are alive and doing what they are designed to do, destroy every B-cell in the body (good or bad). They don't run the initial test until 4-weeks post-infusion, so there was no way to know, but his labs before we left showed an undetectable number of B-cells, which is the result they're looking for.
The effects of having no b-cells (b-cell aplasia) mean that his body cannot produce antibodies, which is critical for your immune system to function properly. I mentioned before that they treat this with IVIG (Intravenous immunoglobulin), the infusion he's been getting for years, which is essentially an infusion of antibodies from others. Unfortunately, we just learned there is a national (maybe global) IVIG shortage suddenly (great). He is marked as high priority due to his treatment, so I hope we don't have any issues getting it as needed. The hospital in Dallas and Noah's doctor here back home are working together to ensure they'll have some for him. A few days before we left, he already needed an IVIG infusion and there was only one available in the hospital, thankfully he was able to get it.
Otherwise, he is feeling pretty good overall. He is getting fatigued a bit easier still and some of the pre-meds have been causing some severe skin sensitivity issues. One of the pictures shows some of his skin that came off with a band-aid, and this was happening all over his body. His doctors advised staying out of the heat and sun for a few weeks while his body and skin recover.
He just wants to play and go 100mph, as usual, so that's not easy. I'll take that as a good sign though!
We must travel back to Dallas once a month for 2-3 days at a time for the next 6 months or so, and then every other month for up to 18 months for continued testing and monitoring. That'll be fun. At least we know a bunch of good places to visit and eat now :)
Long-term, the goal is for his CAR-T cells to last at least one year. Anything less than 6 months will be considered a failure; between 6-12 months they'll observe closely but aren't certain which action they'll take. One of the challenges is that they don't know enough about what causes these cells to live/die at certain intervals in various patients, so it's just a waiting game. There is also a chance that they never die, which can be a problem due to lifelong b-cell aplasia, and then you must stay on IVIG forever (no thanks).
So, we hope they last somewhere in that 1-2 year time frame. Enough time to hunt down and kill any "hiding" cancer cells that have been causing the relapse in his nervous system, but not too long that he must deal with the fallout forever.
If they don't last long enough, they can attempt the procedure again, or look to a bone marrow/stem cell transplant. There is also little data on what happens long-term once the CAR-T cells die. The leukemia could still return, but if that happens, the hope is that there is a much more advanced/mature version of this same therapy available.
For now, all is good, and we'll try to make the best of the summertime that is left (and get studying for third grade too)!
Thank you again for all of the offers to help, gifts/toys that were sent, prayers, positive thoughts, etc, and to all of our friends and family in the Dallas area who came to visit Noah (and those who drove up to surprise him as well).
I'll share more updates as we get through his first few checkups. He can't wait to see some of his friends back at Dr. Patel's :)
We have about two more weeks to go in Dallas if everything stays on track.
I'm happy to report that after spending ~4 days in the hospital the other week, Noah hasn't had any notable issues or other side effects creep up. His counts have been recovering slow and steady and he says he feels "good". He has been a lot quicker to tire out, but considering what is happening inside his body, this is not a surprise.
The past two days he's had what might be a small stomach bug, along with a spike in his white blood cell counts, which is expected, but he seems better today and hopefully that's over with.
Next Tuesday at the 4-week mark he will have an LP (spinal tap) and a bone marrow biopsy, along with a slew of labs to check on the progress/proliferation of his CAR-T cells. They want to see a notable decrease in his B-cell count (if not near zero already) to confirm that they are still alive and doing their job.
His HLA typing tests and results were sent over from MD Anderson as well, just as our plan B, which we hope to never need.
I'll share another update next week, hopefully with positive news from his tests/procedures and with our release to head home! He likes Dallas, but he's ready to get back to San Antonio and out of the hotel/hospital. Me too!
In the mean time, he'll keep playing his favorite game over in the hospital studio: Wheel of Fortune :)
I'm very happy to report that all is going really well so far!
Since Tuesday, Noah has been feeling pretty well overall. He gets tired a quick more quickly since his blood counts are still a bit low from the chemo the prior week, but he certainly wants to get up and go 100 mph! He can't do this quite yet, but it's a great sign.
All of his initial labs and exams have gone well and they'll continue to monitor him very closely for the next couple of weeks here in Dallas. It will take about 30 days to see if the engineered CAR-T cells have been effective at killing off all the B-cells (good and bad), so they don't run that test initially.
We're still in the high-risk window for the severe side effects, which can manifest anytime throughout the next 7-10 days, but we are all feeling good that his body is handling the cell infusion really well.
He's chomping at the bit to go outside and "have fun". Soon!
We appreciate all of the thoughts, prayers, well wishes and gifts that have been sent here to the hotel. I've been reading him all of the notes and comments and the toys, books, and activities have kept him busy (for the most part).
The hospital has done a great job giving him some fun activities to do as well. He was able to visit the "studio" where they broadcast games every day for all the kids and was the designated wheel spinner for the Wheel of Fortune. He had been waiting to do that since our last trip here
We hope everyone has a wonderful Memorial Day weekend.
It’s almost go time! Noah’s cells are here, chilled to a cool -194 degrees Celsius.
They’re warming them up now to his body temp and then they’ll start the infusion.
He’ll have a room full of doctors, nurses, and other observers for the next 2-3 hours just watching him closely for any issues.
Great news! Thank you for the update! Lyn & Ted
Noah is a super star! He has proven it time and time again. And it sounds like the treatment center you selected for Noah is topnotch. We are praying for a successful intervention and look forward to welcoming Noah and family back to San Antonio in the summer.
Chad, Sounds like he has made some positive progress! Our thoughts & prayers are with Y'all! Please give Noah our Love and tell him we said "Howdy"! Lyn & Ted!
LOVE YOU A BUNCH NOAH!
To choose among several complex / risk ridden choices for your child must take extraordinarily meticulous consideration. I am in awe of your family's strength and the power of love. His face says it all- he is surrounded by loving faithful warriors of the highest order.
Noah and family. My prayers are up for you and your doctors. I love you kiddo!
Chad, thanks for keeping me in the loop, he is truly an extraordinary little superman!! Our thoughts and prayers.....!!