How to begin? I’ll start out with the hard truth that has changed our lives since last Friday: Our beautiful 10-year-old son, Noah, has stage 4 leukemia; specifically AML (acute myeloid leukemia).
I still can’t believe I’m typing those words. We don’t know quite when it started. Mayumi, Noah, and Micah (7) spent the summer in Japan, seeing the sights, visiting family, and even attending Japanese school for 6 weeks. Noah was able to do all of these things as normal. Temperatures around Tokyo were well over 100 degrees for most of the last couple months and Noah was perhaps a bit tired, but most are at those temps.
They got back to Indiana on August 14th and we made a quick trip to Iowa. I distinctly remember Noah being “hyper and energetic” around family, which is not uncommon for him. He started into school the following Monday and also started Cross Country season. One thing we noticed was that he was very tired at night. Historically, getting him to go to sleep has been a chore as he’d happily read and possibly sneak in a flashlight late into the night. However, he was “ready” to sleep immediately.
He had a fever early that first week, some dizziness, and headache. The next morning the fever had subsided and he was mostly back at it, but still tired. He attended cross country practices, but was clearly struggling from a mix of what we thought was getting over a little bug, jet lag, and just generally not being in cross country shape yet.
He was still getting things done, getting up easily in the morning for school (not common), and had energy for play with friends. We still felt like he was not quite over something though. On Friday, August 29th, Noah and I were playing catch with a basketball and he suddenly started feeling a bit dizzy and went in to lay down for a bit. At that moment, something seemed wrong in his eyes and I talked with Mayumi about getting him an appointment with the pediatrician.
Mayumi got an appointment scheduled the Tuesday after Labor Day and we went through the holiday weekend. Noah and Micah camped out in the backyard with some neighborhood friends and had a great time and we all had a nice time at a Labor Day cookout at my brother Mark’s house.
Mayumi had the appointment with our pediatrician last Tuesday and there were some thoughts that he was just still getting over jet lag. Even so, Mayumi requested a blood test and got labs done last Thursday.
On Friday, Mayumi got a call at about 1pm from the pediatrician that we needed to take Noah to Peyton Manning Children’s Hospital regarding some bad lab results. All we knew at that point was that Noah was anemic, but not even the extent of that. We got there and a rush of activity from staff resulted in multiple blood samples and a whole lot of concern. We found out that the average hemoglobin level is about 11 and he was at 4.7. Still though, we were under the impression that this was only a red blood cell issue.
A couple hours in we first heard that there were also problems with the platelets and, critically, the white blood cells; everything changed from that moment and our hearts sank. Noah’s white cell count was in a normal range, but his overall blast cell percentage was at 27%. Blast cells are, as I understand, sort of an intermediate stage between a stem cell and fully developed cell, primarily in bone marrow. Typically a healthy person would have a very low percentage of blast cells (just a few percent). A very high percentage is a key indicator for leukemia as it means that most of those cells have stopped maturing and are stuck in an abnormal premature stage, continue to accumulate in the bone marrow, and crowd out the good white blood cells.
The first steps were to get the hemoglobin and platelets up. From Friday night through Monday, Noah received three blood and two platelet transfusions. That has taken him into ranges that do not necessitate transfusions right now, but the leukemia means he’s not producing them as needed and treatments will make that even more consistently necessary. He’s also had intermittent fevers that are consistent with the leukemia.
Within the first couple days the pathologist also studied his blood samples to diagnose the leukemia “type”. In children the most typical type is ALL (Acute Lymphoblastic Leukemia), which is usually treated as an outpatient. The second most common is AML and the older a child is the more likely that it may be AML. Based on the pathology, this is surely AML. This was another punch in the gut. All types of leukemia are terrible, but AML’s treatment is extremely aggressive and will be touched on further below.
Yesterday, he had surgery to insert a central line, which is effectively two tubes inserted into a large vein just above the heart. That surgery went mostly as planned, save a little nick of his artery on the neck, but that will heal up quickly. Noah’s had a lot of blood draws that haven’t gone well in the last days and it’s been real tough for him. A benefit of the central line is that blood draws and inductions are much easier and he regains a more usable left arm without an IV stuck in it. This line will also be necessary for chemo treatment.
One last thing to note during his procedure yesterday is that while he was under they attempted to get a bone marrow sample to test both for a more definitive diagnosis, but also for the presence of FLT3 mutations. This goes a lot deeper, but essentially FLT3 is a mutation that would mean even more rapid blast cell replication. We needed this marrow sample to be enrolled in a research study that involves a medication that is being reviewed specifically for approval to treat those with the mutation. Regardless of whether he has it, a standard chemo treatment plan will be followed, but this would be a supplemental medication.
Unfortunately, the marrow is/was basically 100% blast cells and too dry to get the desired sample size. This was yet another punch, but our doctor made some quick moves and calls and got us enrolled in the program with that smaller sample. It will be irrelevant if FLT3 is not at play, but we won’t know that for 10 days and are braced for that eventuality.
As for the chemo treatments, as mentioned, all phases are in-patient. There are some nuances to how this plan may go based upon how his body handles it, bone marrow transplant needs, specific mutations, etc. Regardless, we know that there will be at least somewhere around 5 main chemo stages which are intensive chemo treatments in the hospital separated by some time at home in between.
The first chemo “induction” starts tomorrow. It will be 30 days, 10 of which will involve chemo that will attempt to knock his white blood count down to 0, effectively killing all the blast cells. Of course, this means there are no good white cells either and the body has no infection-fighting abilities so strict monitoring and care will be needed during that 30 days. He will be in a “positive pressure” room that entire time. This is a room that has an ante room outside so that anyone coming in will need to enter that room first, close the door, and then enter his room to assist in keeping germs out.
This is not a complete bubble as Mayumi and I will be able to stay with him. We “can” have visitors but, as you might imagine, if we’re working with an ante room, the less germs we can bring in the better. We may bring Micah in from time to time as it’s going to be extremely tough on his little brother, but that’s probably the extent of it.
We are also extremely concerned about the mental effects of isolation so one of us will be there pretty much all the time. There is a flow of nurses, doctors, art and music therapy, in-house hospital school teachers, PT, OT, and others that will also be there to help. We know there is a lot of interest in engagement from family, friends, classmates, neighbors, etc. We would so love to be able to have you visit in person, but the number one goal here is, of course, for the best outcomes. As such, we’ll leverage video calls for those visits.
We’ve already experienced a massive amount of outreach and support from family, friends, neighbors, school, etc. We are and feel loved. We’ll need a lot of support here and we are thankful and appreciative for such a wonderful community. It’s not in our personalities to feel real comfortable “asking for things”, but also our entire worldview has changed on a dime, so our approach may change on that front.
I would note on a more administrative level, we know that people want to get a lot of things to put a smile on Noah’s face. We aren’t opposed to toys and such, but will be dealing with a limited amount of space. First, please do not think that you need to get anything at all; we have many things. If you do get something, please understand possibly not everything even ends up in the hospital room and large items almost surely will not fit. Additionally, the doctor said we probably want to avoid stuffed toys as they tend to accumulate germs more readily. All of this has been a whirlwind so there may be more targeted items, cooking, etc. needed that will become evident as we make sense of things.
I’ll try to post updates, but for all our sakes, they will be much more concise. There was a lot to cover and, frankly, I probably needed to dump a stream of consciousness for the catharsis of it.
Undoubtedly, we are grieving right now and it still feels like we are in a bad dream from which we cannot awake. It seems that every time there is a “bad” or “worse”, the result is the “worse”. At the same time, Noah is alive and we will cherish and fight every moment to get him back to health. That is the only thing we can do and we will do. We have a world-renowned doctor and staff on our side and an unmatched support system. And we have a little guy that I marvel at ever more each day as I see him in a battle for his life. We are optimistic that we will beat this and he will come out even stronger on the other side of it.
We love you all and thank you for your continued support, prayers, and happy thoughts.
