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 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.....!!