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 arrived in Dallas this past Monday for a week of prep chemo to reduce his lymphocyte counts in order to make room for the engineered cells to be infused. All has gone fairly well, but Noah has been a hit a bit harder with fatigue and nausea than usual as he is not used to one of the chemotherapy drugs they are giving him.
He'll get a chance to rest and recover a bit over the weekend and then return Tuesday for the big day.
His doctors told us that Tuesday morning they will bring his cell infusion to his room still in the liquid nitrogen tank and remove them right there, and after a quick thaw, they'll start the process. It will take less than 15-20 minutes, how about that?
Noah calls them his "Pac-Man" cells since they are supposed to go in and eat all the cancer cells (along with all his other healthy B-cells too of course), but that is the lesser of two evils at the moment.
Apparently, the preservative used in the infusion along with his cells causes a really bad taste in the mouth so Noah has been planning on what he'll eat during the process. Pickles or olives? He can't decide yet :)
Once the infusion is complete, we'll have to monitor him very closely for about 10-12 days for any of the side effects of the procedure. If any complications arise, he'll be admitted to the PICU immediately as some side effects can be extremely severe and life-threatening. We have to remain in Dallas at least 5 weeks however for some continuous monitoring to ensure the cells are surviving in the body and doing their job.
We're hoping for the best. The team here feels really good about this not being an issue due to his low disease burden (at the moment), but as with anything, you never know what can happen. We'll be ready either way.
Please keep Noah in your thoughts next Tuesday (5/21). This procedure has only been done a few hundred times ever, and while this hospital here in Dallas is one of the leading hospitals for CAR-T, they've done this only about 50 times so far. Extremely "new" in medical terms.
We are very glad to have this option however and hope it works either as a long-term solution, or at least a bridge to a future treatment that can help him avoid more harsh chemo and especially any form of bone/stem cell transplant.
A big thank you to Dr. Patel and his staff back home who have worked hard to keep Noah on track while we've been waiting for the green light on this treatment. He is in the best condition/state possible to go forward with this treatment.
Thank you to all of our family and friends who have been sending constant support, well wishes, and reaching out to see if there is anything we need. We appreciate it more than you know!
*** a good explainer video for what CAR-T is and how it works attached ***
So what is the treatment plan?
It begins with preparing Noah's T-cells for harvesting so they can be sent to a lab to be genetically modified and grown to a large number for re-infusion. Noah had to halt his chemotherapy for two weeks in order to clear it out of his system so healthy T-cells can be harvested.
We'll be headed back to Dallas on Sunday for about one week. Monday they will run some extensive blood tests to verify his T-cell counts, etc. Tuesday he will have surgery to place a central line catheter, which is larger than his current catheter, in order to collect large numbers of T-cells. They'll use what is essentially a dialysis type machine to do this. Wednesday they'll bring him in for the cell harvesting (apheresis) for a couple of hours. Overnight they'll verify if they were able to collect enough T-cells. If not, he'll do this again on Thursday. Then he should be able to have the catheter removed on Friday and either come home that day or Saturday.
Once they send his cells to the lab (somewhere in New Jersey I think), it can take about 2-4 weeks for the infusion to be ready. At that point, we'll have to go back to Dallas for roughly 5 weeks. The infusion only takes about an hour (or less). From there it's all about monitoring for the potential side effects and managing that as best as possible. During and after that phase, it will be a lot of labs monitoring to ensure that the CAR-T cells are doing their job and taking hold. They determine this by checking the number of B-cells in the body, which if everything is working, should be effectively zero.
From there, it's a waiting game.
I'll share a lot more in smaller doses once we are in Dallas so everyone can follow along with how things are going. I just wanted to explain the process formally and some of the information we were given, especially since it was a big decision for us.
Thank you all for listening and for all of the support and well wishes before Noah begins this next phase of treatment. He is always positive about what he has to go through and that's in large part due to all of the encouragement he receives from all of his family, friends, and supporters!
As I mentioned in the prior update, we had a recent visit to Children's Medical Center Dallas to meet with their team for a second opinion. This hospital and oncology team has some of the most experience when it comes to CAR-T therapy for pediatric acute lymphoblastic leukemia patients and we had several other hospitals/doctors, including Noah's local doctor, all point us to the same place.
If you recall, one of our major concerns was the different perspective shared by the team at MD Anderson, who strongly encouraged aggressively treating with a bone marrow/stem cell transplant as they were not as comfortable with CAR-T given Noah's current lack of active disease (due to chemo-induced remission) and the lack of data around the efficacy with CNS disease/relapse (a relapse in the central nervous system).
To be clear, while there is much more data to show that a bone marrow transplant (if successful) could potentially have a better long-term outcome with a lower risk of relapse, the challenge here is the risks involved with getting Noah's body ready for a transplant. Due to his prior radiation treatment, he is at extreme risk for radiation toxicity, among other things, that could pose life long problems or prove fatal. Then there is the risk of fatal infections in the first few weeks of transplant, GvHD (graft vs host disease), etc. The list goes on and on. If we have to go down this road, we will, but we want to ensure we've tried everything possible beforehand.
This is where CAR-T (or simply "CART") comes in, and it is not without risks either. I've mentioned before some of the side effects and toxicity (cytokine release syndrome / cytokine storm, neurotoxicity), but side-by-side, this looks to be a safer initial alternative, if you can call it that.
Due to how new and cutting-edge CAR-T therapy is, there is much less data to show the long-term effectiveness. Depending on the patient, there can be high rates of relapse, but it's hard to say exactly why (and when). All we are looking for is a chance for Noah's body to finally get a leg up on the cancer and maybe control it on its own.
Unfortunately, this has not been the case historically, but we are hopeful due to the fact that both of Noah's relapses have not been full marrow relapses. The leukemia has only come back in his nervous system, meaning there is some level of active disease that that is causing the re-occurrence that the chemotherapy, steroids, and radiation have not been able to fully eradicate. If the genetically engineered CAR-T cells can detect and kill the remaining cancer cells that the tests cannot directly observe (but are responsible for the multiple relapses), this may do the trick.
For those curious about the disconnect between MD Anderson and Dallas Children's, there is a rather fascinating explanation. The concern from the doctors at MD Anderson was that the genetically modified T-Cells that will be reintroduced to Noah's body would not have any or enough cancer cells to attack to continue to proliferate (multiply). This is crucial for CAR-T to be effective because of the new cells don't live long enough, they will have far less chance of finding and killing/controlling the cancer cell population. While they grow the modified T-Cell count to large numbers in the lab for the initial infusion, they need to continue to multiply in the body as long as possible. The longer they last, the better the outcome in the patient.
So what made the doctors at Dallas Children's more comfortable with using CAR-T in Noah when his active disease is (currently) very minimal? Because Noah has B-Cell acute lymphoblastic leukemia, the specific CAR-T drug/treatment he is set to receive is specific to targeting B-Cells (the drug is called Kymriah). This is still early days for this kind of treatment, so unfortunately they cannot specifically target ONLY cancerous/leukemic b-cells. The modified T-cells will target and kill ALL of Noah's B-cells, without prejudice.
It's a double-edged sword. This is good because in the absence of enough leukemic b-cells to keep the CAT-T cell population growing, they will have plenty of healthy B-cells to attack and kill, allowing them to (hopefully) grow enough to stay in his body for a long enough period to kill any cancer that attempts to cause another relapse event.
The bad news about this is that Noah will essentially have zero B-cells in his body, for as long as the CAR-T cells last (this is called b-cell aplasia). This could be months or it could be years. This is where they simply don't have enough data and long-term experience to know what to expect up front. Your B-cells are responsible for producing antibodies which identify substances in the body which your immune system needs to control/kill (viruses, bacteria, etc).
I did not know this was a potential side effect until the doctors explained this, and while it's certainly a bit scary to think about, thankfully there is a good interim treatment option to reduce the risk during the time that the CAR-T cells are active. It's a treatment Noah already gets almost monthly, called IVIG (intravenous immunoglobulin). This is essentially an antibody transfusion which helps those with compromised immune systems and antibody deficiencies. Noah may need to get this a bit more often, but it will keep him safe until his body can once again produce healthy B-cells.
All of this said, there are no guarantees (or anything close to it) when it comes to CAR-T. Some patients do incredibly well for years and some have high relapse rates in the short-term. We just don't know. The backup is the bone marrow transplant option, which we will have to be ready for in the worst case scenario. If the CAR-T cells don't last at least 4-6 months, the doctors already mentioned that Noah will likely need to immediately pursue a transplant. There is also some new data that shows CAR-T treatment immediately followed by a transplant has some of the best outcomes, at least in high-risk patients with refractory leukemia (refractory means that the cancer is not responsive to chemo and other traditional treatments).
We are going to move forward with CAR-T and hope for the best. Even if the CAR-T cells last longer than 6 months (possibly even years), there is always a chance the cancer can come roaring back as soon as they die out. The hope is that by that time there will be future generations of CAR-T therapies that can more effectively target and kill the cancer permanently and with less collateral damage.
We feel confident that this is the best path forward out of the two options available. The third option is to simply wait and see if Noah would have another relapse without any treatment. There is a very small chance that he may not, but the odds have not been in his favor so far, and the risk in waiting is that if the leukemia returns and does not respond to front-line treatment (chemo/steroids), the prognosis is much worse, even more than what we're looking at today. We are going to be more proactive at this point.
So what is the treatment plan?
Long post incoming...
Let me backtrack a bit and start at the beginning (of recent events). We discovered Noah's second relapse at the end of November and he immediately began a 10-week triage protocol meant to limit the spread of the leukemic cells in his central nervous system and hopefully achieve a chemo/steroid induced remission so we could begin exploring more proactive options to decrease the chances of another future relapse. The goal was to get Noah into CAR-T treatment, which is very new and still very experimental. As of this point, he meets the qualification criteria (refractory or multiple relapsed B-Cell acute lymphoblastic leukemia).
Thankfully after about 4-5 weeks of his 10-week protocol, Noah's CSF (spinal fluid) was clear of detectable leukemic blasts. This doesn't mean every last leukemic cell/blast is gone, just what is detectable (this is important later). According to this doctor, and some common sense, it's safe to assume there is some level of MRD (minimum residual disease) still remaining in his nervous system. He has now relapsed twice, both what they call a "CNS isolated" relapse, meaning the cancer only came back in his nervous system and not his marrow. We are glad it's not both, even though a CNS relapse presents it's own set of unique challenges with regards to treatment. There is some level of disease that the chemo, steroids and the radiation treatment he had back in 2016 simply has not been able to eliminate.
Noah finished his 10 weeks of chemo, steroids, spinal taps, etc at the end of January and everything has been looking good. During this time we had lined up a consult for treatment at MD Anderson, which I noted in the last update. Again, this was a consult to admit Noah for CAR-T therapy and based on the initial information we had sent, the team at MD Anderson had already qualified him for this treatment.
Our consult the other week didn't go quite as planned. After talking through Noah's case extensively, the team there doesn't feel that there is enough active disease for CAR-T to be effective and they also have concerns about it's ability to treat CNS disease effectively as well (apparently there is less data and overall cases to support this).
The team at MD Anderson is recommending an immediate bone marrow/stem cell transplant, with the goal of giving Noah a completely new immune system instead of trying something like CAR-T with a transplant as a back-up option.
This sounds good on the surface of course. If we can simply give him a new immune system that is capable of keeping the leukemia at bay, then he could be "cured" long-term.
The problem is in the risks involved with this course of treatment. CAR-T already has some significant risks, but a bone marrow/stem cell transplant brings a lot more risk to the equation, particularly due to Noah's extensive radiation treatment he already had. Severe risk of radiation neurotoxicity, organ damage, infertility, etc...and this is just being prepped for a transplant. Then there is extreme risk while you have no immune system and are hoping donor cells can properly graft, graft host disease (GvHD), etc, etc...the list goes on. Noah also has a fairly unique ancestry composition, meaning the chances of finding a 10/10 donor match are slim.
Needless to say, we are not excited about this option. I can understand their goals, and with a hospital that is world renowned for bone/stem cell transplants, it makes sense. However, for us, what doesn't make sense is trying a procedure/treatment that if it works, may allow Noah to avoid all of the risks and long-term damage involved with a marrow transplant. If CAR-T doesn't work (short or long-term), we can still do a transplant as a next step.
After consulting further with Noah's doctor here locally, we began the process of getting some second/third/fourth opinions in the past two weeks from some of the other hospitals that are highly regarded for the new CAR-T treatments and bone/stem cell transplants.
I'm happy to report (and a bit relieved) that after several consults, every team/doctor we've talked to all recommended Noah for CAR-T as an initial treatment and didn't completely understand the recommendation from MD Anderson not to try this option.
Each of the hospitals offered to treat Noah and provide as much assistance as possible, but thankfully, they all recommended a doctor and team in Dallas as a closer alternative and all had high praise for this team.
Coincidentally, this is the same group that Noah's local doctor immediately referred his case to after we returned from MD Anderson. I have a feeling we'll be in good hands.
We will be traveling to Dallas later this week for an in-person consult to go over everything in detail once more and hope to get Noah into treatment soon after. I'll share those details as soon as we have them.
As you can tell, it's been a complicated few weeks trying to determine the best course of action. When you have a team of doctors somewhere like MD Anderson recommend a different course of treatment it makes you step back and re-evaluate things. If all of the other doctors has pointed to that path as well, we would do it without hesitation, but when we get to this point where there are limited options left on the table, we want to be extremely diligent about every decision and the options it leaves open in the future.
We have to make a tough choice with the few options on the table and hope it's the right one. We as a family along with his treating physician (and the doctors we spoke to for additional opinions) are all confident in this course of treatment, which makes us all feel a bit better.
So, how has Noah been the past couple of weeks? Pretty great actually! :)
For the past 2 weeks he has had to go back to daily/weekly chemo and spinal taps to keep any short-term relapse at bay while we worked through the treatment options, but it hasn't slowed him down.
Originally, we did not think he would make it back to school after the Winter Break due to low counts and preparing for our trip to MD Anderson, but every day that he's been able to go to school, he's been there.
He's even been able to sneak out for a few fun surprises in the past couple of weeks as well.
We are super thankful to all of his friends and family who've been coming to see him or constantly checking on him over the past two months, and especially his teachers and the staff at his school (McAndrew Elementary) who have gone above and beyond to keep it safe for him to attend. He looks forward to school most days and helps him stay focused on something else besides his treatments.
Those who know Noah know that he doesn't make much of his treatments/procedures and just wants to get on about his day, always happy as long as he isn't cooped up. This has always made it easy for us when dealing with everything, because you'd almost never know what he's going through. He just doesn't show it and tries his hardest to act like a normal kid. Always happy, always planning what's next and never slowing down (even when he should).
Thank you again for all of the continued support and outreach!
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.....!!