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 are very sad and devastated to announce that we did not receive good news yesterday regarding Noah's second round of labs/tests.
It was confirmed that he is indeed suffering a relapse, specifically in his central nervous system, once again. Roughly 9% of his spinal fluid contained leukemia blasts/cells.
As of right now, his bone marrow is clear, which is definitely one positive, as this would have made things just that much worse.
This is Noah's second relapse at this point. His cancer diagnosis was confirmed in December of 2011 and while nearing the end of his treatment in Sept/Oct of 2015, he had the cancer come back in his nervous system.
After completing a second full 3+ year protocol which ended in March, we were extremely hopeful. He has been feeling great and has zero signs of problems since that time. We did know that there is a period of time after treatment where anything can happen, but each day that went by, we felt better and better that we'd never have to worry about his cancer again.
This caught us by complete surprise :(
I do not have a lot of details to share just yet, so I will be posting more regular updates once again in the next couple of days and weeks, but treatment will start immediately next week.
We have complete faith and confidence in Noah's doctor, who is working on a custom protocol for him over the weekend.
The goal is to push the cancer into remission with targeted treatment directly to the nervous system as quickly as possible, meaning at least one spinal tap + chemo into the spinal fluid once per week until results are achieved. Noah will also have to restart high-dose steroid treatment and IV chemotherapy to protect his marrow and ensure that the cancer is not able to jump over the blood/brain barrier.
Separately, we are trying to line up what the next steps are once he achieves remission, which we hope is not a long process, as this would be a sign of the leukemia becoming more resilient to the chemotherapy/steroid treatments.
One option would be to try and achieve remission and wait to see what happens once more, or just jump straight into more aggressive and proactive treatment.
The options there are a bone marrow transplant or ideally, the brand new CAR-T immunotherapy, thankfully based out of MD Anderson in Houston.
This is an exceedingly expensive option and we don't know the extent of coverage by insurance at this point, but it would likely be his best hope, particularly if his body cannot adapt on its own. We are thankful to (maybe) have this option, and while there are risks, I believe them to be far less than a traditional marrow transplant, which we hope to avoid at all costs.
Please continue to keep Noah in your thoughts.
He has remained happy and not too worried about the news, thankfully. All he cares about is staying in school, which he was finally able to attend at the beginning of this school year.
We don't want to take that away from him as he is been fairly isolated almost his entire life, but it is a reality we cannot avoid. He'll get to stay in school until his immune system is too weak to keep him safe.
Once again, we hope that his doctor and medical staff are able to triage the relapse quickly and effectively. Then we just have to decide how to proceed after that and what options we have to keep the cancer at bay.
Thank you all for the thoughts, prayers and notes of encouragement. This makes a world of difference and we appreciate everything.
Expect another update by next weekend and feel free to reach out any time.
It's been another long while since I posted a full update on Noah's progress outside of sporadic updates on Facebook, so I wanted to take a moment to catch up for those who have donated and/or simply follow his progress here on GoFundMe.
We also received a bit of concerning news the week before last which we are working through in hopes that it doesn't turn into any major issue.
In December Noah finished the last of his week-long hospital visits for very high-dose chemo and the last phase in his treatment before he would receive radiation treatment to his head/brain. Even though the leukemia had been cleared (as far as labs could show) from his central nervous system, the radiation is still required to ensure that everything is killed, especially in some hard to reach places where the chemotherapy simply isn't as effective. The labs and scans can only show activity above a certain amount, so even if they are "clear" it does not necessarily mean that it is all gone.
Since the radiation treatments, Noah has been doing fairly well outside of a few minor complications and side-effects which were to be expected. The doses of radiation he received were quite significant and not targeted to a single spot on the brain as a lot of other therapy is for different disease. He was treated throughout his head/brain which has the potential to impact quite a few things. So far so good though, but only time will tell.
Since December Noah has been on what they call "maintenance" protocol which is continual slow and steady treatment to ensure no relapse. This consists of daily/weekly chemotherapy, steroids, and other treatments and can last 1-2 years depending on the situation. He's been handling this quite well and for the most part, his labs/counts and body are holding up well!
Aside from the chemotherapy and other drugs, the other part of this protocol is routine spinal taps to check on the central nervous system (CNS). If you recall, Noah relapsed in his CNS, not in his marrow/blood, which is why he had to undergo some intense treatments in the hospital AND the radiation for the past two years. These spinals are done regularly in normal circumstances, but due to the radiation treatment, Noah was not allowed to have a spinal tap performed for almost 6 months. The radiation can cause problems with the spinal column/tissue healing after this type of procedure which would bring on another whole host of problems.
So fast forward to the week before last and Noah finally has his first spinal tap since getting radiation treatments almost 7 months prior. We expected everything to be clear as there were no signs of any issues and all of his other labs/tests/exams have been mostly good.
Unfortunately, his doctor (and verified by others) found exactly TWO leukemic cells in the labs from his spinal tap. They cannot say exactly what this means in terms of how widespread (or not) it might be, but we know those shouldn't have been there at all. If there are two there are undoubtedly more. The other question is how long have these been there. According to Noah's doctor, they appeared to be unhealthy/dying which is a good sign, but that doesn't mean they can't spread.
What does this mean? It's significant enough that we had to take immediate action to triage and hopefully get ahead of whatever might be going on, but this is not considered a relapse, at least not now which we are extremely thankful for. Basically, what is happening is that Noah will be getting TWO spinals per week with chemotherapy treatments directly into his spinal column to kill anything that might be there before it has a chance to spread and do any damage. He will have to continue this path of treatment until his doctor can get 3 labs/tests in a row with no sign of disease.
This is intense treatment in a compressed period so we hope it resolves itself quickly. Even when Noah first relapsed and his spinal fluid was full of leukemic cells, they only did one spinal tap per week with chemotherapy. So, this is even more intense in an effort to simply stop whatever is happening in its tracks.
While these many procedures are hard on the body, thankfully this little guy is a massive trooper and for some reason looks forward to spinal taps, don't ask me why, so at least he is in very good spirits :)
Noah has already had the first wave of spinal taps/treatments this week and this is in addition to his weekly IV and daily chemotherapy. We'll know more later this week and I'll be sure to post an immediate update the moment we get some news!
Please keep him in your thoughts and prayers, especially for the next couple of weeks. He is so close to beating this horrible disease a second time, we don't want to see anything that might jeopardize that. It has been over 5 and a half years of daily struggle for him and a lot of sacrifice in his life. We just want to get him across that finish line so he can for once get to enjoy a normal childhood and do all the things he's waited so long to do.
In terms of progress/timing, if this hiccup doesn't cause any significant issues or delays, Noah will have roughly another year to go on his maintenance protocol before they'll finally take him off his chemotherapy and other treatments. We'll be counting down the days!
Other than this Noah really enjoyed school this year and had an amazing homebound teacher that he loved! She was great with him and he kept up really well (she also volunteered to do his homebound and it was her first time). Thank you, Mrs. Chavez!!
He's been practicing a lot of reading and especially writing to get ready for first grade. He will still be homebound for now and his new teacher who we met just before the school year ended (and also volunteered for the first time) looks like she'll be just as great. We're looking forward to her coming over when school starts.
I'll share some more pictures and videos on Facebook as well. GoFundMe doesn't make it as easy to do that so I've decided to set up a dedicated page for Noah as well which you can follow.
You can find his page here:
Thank you again for all the love, support, prayers, well wishes and donations for Noah as always.
P.S. He finally has hair again and it’s come in very healthy, and CURLY. Everyone loves it!
My apologies for the long delay between updates. Between Noah's treatments and work, there isn't always a lot of time to post. As I've said before though, no news if often good news, which is generally the case here for the past few months!
Noah has just about completed the intensification and induction phases of his treatment. These two phases are generally the most difficult since this is where he receives continuous high-dose treatments of various chemotherapy drugs every couple of weeks (in the hospital).
We just completed his last high-dose treatment a few weeks ago (woohoo!). While Noah has held up pretty well, it began to take a toll on him towards the end, but he's excited to be done.
This does not mean he is done with chemotherapy, far from it. We have another two years to go in what they call the "maintenance" protocol, if all goes well. It's more manageable and most will be done at the clinic and some at home thankfully.
This past week however, Noah started the radiation therapy of his brain which is the treatment we've been most nervous about. This was not necessary the first time Noah was going through treatment since the leukemia was isolated to his marrow and blood, but his relapse last year was in his central nervous system (CNS), meaning in his spinal fluid and the lining of his brain.
While he will be receiving the lowest possible dose of (photon) radiation, unlike a tumor, it is not limited to a specific area. Because the leukemia can be anywhere (and was everywhere) in the brain or lining, they have to radiate all the way through the brain and the back of the optic nerves which bring along a large potential for side effects.
This will unfortunately include an impact to mental aptitude (hopefully to a very minor degree), possible change to personality/behavior, hormonal imbalance due to certain glands being impacted, cataracts long-term and a laundry list of others.
Without the radiation the data speaks for itself. The chances of relapse are up to ~80% higher if you do not radiate the areas where the leukemia cells spread. It's not much of a choice :(
We just have to hope and pray for the best and that is what we're doing. We want him to beat this for good this time and give him the best treatment possible. So far his recovery has gone well, especially considering he relapsed which is more difficult to treat.
Noah has about 8 more radiation treatments left which will go through the 23rd (every day except weekends). The first two were a bit tough since he is quite scared of the situation and the radiation machine.
He has to wear a special mask that was molded just for him which is locked down to the table (see picture). It's skin tight. Once he commits to the procedure he seems to do really well, but he certainly tries his best to get out of it each time. The treatment itself only lasts about 5-10 minutes each day and we want to avoid anesthesia at all costs. Hopefully the next 1-2 weeks goes well *fingers crossed*
I'll be sure to post an update once his radiation treatment is finished and we find out if he will officially be able to go into the maintenance phase of his treatment.
Thank you to everyone who constantly checks in on Noah, asks about him, stops by, calls, the prayers, everything!
Noah's been battling this disease for FIVE years this month which is a long time to treat with no kind of break or rest in-between. We're going to get it done once and for all this time!
If there is not an update beforehand, Merry Christmas and Happy Holidays!
Noah has been hanging in there through the majority of his intensification treatments over the past couple of months. This is the hardest phase of the treatment overall and we'll be glad to be done with it.
He has about ~3 more high-dose treatments to do in the hospital and we'll be back there next week for one of those.
Overall his response has continued to be good although each successive phase of the intensification treatment seems to be harder and harder to recover from. We haven't had any major problems prior but after his treatment a few weeks ago Noah has struggled to recover fully, so it's been a month of very little activity for him and a lot of isolation unfortunately due to very low white blood counts and simply feeling terrible.
He can't even eat most of his favorite foods right now due to the lingering effects of the chemo. On top of feeling constantly nauseous, certain chemotherapy drugs can impact your taste and smell quite a bit which you might imagine can cause some trouble when eating. Things can taste completely different or like nothing at all.
That said, the past few days he seems to be doing a bit better and his counts are slowly recovering which is why we'll be back at it in the hospital as early as next week.
About 3 more rounds to go and then if everything is looking good he'll move on to the radiation therapy phase. Still not looking forward to this but we know it's necessary in order to prevent a future relapse. We're hoping by the end of the year that he can move on to the maintenance phase of treatment and begin to slowly recover throughout 2017.
Noah will be starting Kindergarten as well next month! Unfortunately he'll have to stay home throughout his Kinder year but hopefully he'll be able to visit his class a few times throughout the school semesters. They assign home bound kids to a class regardless so they can do certain activities and have some sort of connection to other kids.
We'll get the specifics soon but it sounds like NISD has a great home bound program and he'll be paired up with a teacher who will come over a few days a week.
Over the past few months Noah has made a wonderful new friend who he loves spending time with as well. We hired a part-time nanny, Victoria, who has been a huge help and a blessing. She is wonderful both at keeping up with Noah and all of his activities and doing a lot of school preparation over the past few months.
This would not have been possible without all of the support and donations from everyone here. THANK YOU ALL.
I'll be posting another update much sooner than usual as we'll get an update on Noah's roadmap/treatment plan and what to expect over the next couple of months.
We're also awaiting lab results from his spinal procedure this past week which are taking a bit longer than usual. Hopefully it's just a delay on the hospital side. We'll know tomorrow. Fingers crossed.
Again, we really appreciate the continued support and can't thank everyone enough for reaching out and offering to help, donating, sharing, everything. This has lifted a tremendous amount of stress off our shoulders.
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.....!!