The Start of Interim Maintenance

Participating in his school’s spirit day from the hospital

The last couple of weeks have been relatively good, with a few small bumps and some great news! About two weeks ago, Ethan finally started the next phase of treatment, called Interim Maintenance (I/M). I/M is the third phase of frontline treatment, with frontline treatment being the period of systemic and intensive chemotherapy prior to several years of Maintenance (less intense treatment). I/M is supposed to be a 63 day phase, though like the prior phases, it can be days to weeks longer due to delays that can arise if Ethan doesn’t make blood counts for the start of each round of chemo. During I/M, Ethan will be admitted to the hospital four times to receive multiple types of chemo including High-Dose Methotrexate, which is infused over 24 hours and requires subsequent drugs to help flush it out of him (it can be very toxic to the kidneys and liver). He won’t be discharged until the Methotrexate levels in his blood are below a certain number, which we were told is likely to require 4-8 day hospital stays, depending on how he responds. During this phase, he also receives two spinal taps, the first of which includes a bone marrow biopsy to check for residual disease. I’ve been nervous about starting I/M — he’ll be getting a high-dose chemo that could have serious side effects, he’ll be getting more Vincristine (the chemo that has caused considerable peripheral neuropathy), and I’m worried about the  toll on Ethan and on the family of every two week hospital stays (especially if his stays are on the longer end of the range). The shorter the stay, the longer the time in between — so I’m praying that each stay is on the shorter side.

Ethan in a good mood as we are admitting for Round 1 of Interim Maintenance

Happy to be leaving the hospital!

Ethan was admitted for his first I/M phase hospital stay two weeks ago Tuesday (2/24).  His liver was 10x normal (likely from the Erwinia in the prior phase), but they said that we could still proceed while also keeping a close eye on his liver. Heading to the hospital that day was a huge contrast compared with all of his other hospital stays, all of which have been emergencies and mostly in the middle of the night. He had a great attitude, was all smiles and full of jokes, and he was impressed with his room (large, had a “view”).  In the late morning he had the spinal tap and bone marrow biopsy, and he woke easily from general anesthesia. Several hours after the procedure, the 24-hour high-dose methotrexate drip was started. It didn’t cause him much trouble, except the continuous drip, as well as the drip to flush it out of his system, had him needing to pee all night for the duration of the hospital stay — so not much sleep was had. He had some mild side effects, including soreness (from the biopsy) and headaches (from the spinal taps), and he started with a few mouth sores by Thursday (side effect of the Methotrexate). Blood levels were monitored regularly, and by Friday evening the Methotrexate levels were low enough for him to be discharged. So I/M dose #1 was a 4 four day hospital stay — about as good as we were told we could expect.

The biopsy results were MRD 0! On Friday (2/27) while we were still in the hospital, we received the results from Tuesday’s bone marrow biopsy. We learned that Ethan is officially minimal residual disease (MRD) 0, meaning he has no visible signs of Leukemia cells. The only other biopsy that Ethan has had thus far was right after Induction at Day 29 of his treatment, where we learned that he was still MRD positive and thus put in the “High Risk” treatment group. While were were told that we should expect him to be MRD 0 at this point in his treatment, the good news was still a great relief that Ethan is on the right track.

Recovery and a break from chemo. After leaving the hospital on Friday 2/27, Ethan had about six days at home where he was in quite a bit of discomfort. He was tired, emotional, and had some nausea. Most bothersome for him was that he had a mild to moderate case of mucositis, which is a painful inflammation and ulceration of the lining of the digestive tract, including the mouth and throat. It is one of the more common side effects of high-dose methotrexate, so we know to expect that it might happen with each dose. Ethan had a difficult time swallowing and even laughing caused tears, and not much eating happened at all until it started to clear. A blood draw on Tuesday March 3 came back with very elevated liver enzymes, so we were told to hold his daily oral chemo to give the liver enzymes a chance to go back down so that he can hopefully start his next round of in-patient chemo the following Tuesday. I don’t like the idea of holding chemo, but apparently that’s what needed to happen so that his body can recover and we can proceed.

Enjoying sibling time in the pool

By Thursday of last week (March 5), the side effects were almost completely gone and Ethan was feeling a ton better. Being off the oral chemo also meant that he wasn’t experiencing any side effects from that and that his immune system wasn’t being suppressed, so his blood counts went up into a safe range. He felt good and had a chance to get out and do more for a handful of days, which he really enjoyed — the silver lining in having to hold chemo. This past Monday (March 9), he went in for bloodwork, hopeful that his numbers would allow him to be admitted Tuesday, when he was due for his next IM dose. His liver enzymes still weren’t normal but they were low enough to proceed; however, his platelett count didn’t make the cutoff so the Tuesday admit was delayed.  We went back this morning (Thursday) to check blood counts again, and we just found out that he’s good to go — so we are now in the process of getting admitted for Round 2 of Interim Maintenance.

Highlights from the Last Couple of Weeks. Of course, an MRD of zero was the most significant highlight, as was a week or so of some level of “normalcy” that the break from chemo and side effects afforded. (I think I will always put that word “normal” in quotes now”.) Here a are few things that stood out for us:

• While in the hospital, Ethan visited a couple of his favorite places: (1) the CHOC radio station (Seacrest Studios), where he enjoyed dancing, singing, and talking up a storm with the Chapman University student volunteers and  (2) the CHOC movie theatre, which shows new releases and offers popcorn!
  

  Happily calling the hospital radio station after winning Bingo

  

  Ethan loving his visit at the CHOC radio station!

• Ethan really enjoyed his excursions with Papa, including a trip to the theatre to see a matinee (his first movie since diagnosed), several trips to the driving range and meals at the golf club, the Tustin Brewery, and Archie’s Ice Cream. He also was thrilled to go to Color Me Mine and CPK with Nana.
• 

  Bowling with buddy Quinn

  Social time is always a treat these days — whether it be in -person or seeing his class or cousins via FaceTime. Recently, he’s enjoyed visits from friends SuperMax and Colton, special time with our old nanny Neri, lunch and bowling with buddy Quinn, attending part of his buddy Aidan’s birthday party (his first birthday since diagnosis and only possible because he had higher counts for a few days), and going to the Neary’s and deMaria’s for dinner. We’ve discovered that going to friends’ houses (rather than just having people visit us at our home) is a welcomed “excursion” for Ethan — another way to get him out. Home definitely gets old for him!

  

  Feeling well enough to play basketball with buddy Colton

Ethan happy to be with his variety show group.

 

• One of the best highlights was getting to go to his school variety show — which we did not think would be possible. He has performed with the same group of boys for the last few years, and this year the group included him by giving him four solo lines that were video recorded and shown on large screens at the show. Since his white blood cell count was up and the church had a separate enclosed moms room, Ethan was able to watch the show. He loved seeing all his buddies, being part of group photos, watching his sibling acts, and feeling part of it all.
• As usual, Ethan is loving his coding lessons. Check out his recent blog post about his Scary Maze game!

• Ethan has been golfing with his papa for a few years (mostly just the driving range). A couple days ago he had his first golf lesson. He was especially happy that the instructor took him on the course for the lesson. Watching him was a highlight for my dad and me as well!
  

  Ethan’s first official golf lesson

• A couple weeks ago, a nurse asked Ethan about his weekend plans. He shared that he’s seeing his cousins, after which the nurse asked “Do you see your cousins a lot?” Ethan responded, “I used to not see them that much. Since I got Leukemia, I see them like almost every week. That’s one of the good things about having Leukemia.” This morning when we were driving to the hospital for our next hospital stay, he said, “The bad thing about making counts is then I’ll have to stay in the hospital for a while, but the good thing about that is it means I’d be getting closer to getting done with the hard part. I’ve noticed that you don’t always find bad in good, but you can always find good in bad.” I love his spontaneous philosophizing and the way he looks at things. And I’m so grateful for his relationship with his cousins.
  

  Enjoying math with partner Jack. I can’t imagine this process without all of the technology!

  

  Cousin time is always the best!

Ethan loved hanging out last week with his buddy Davin.

And now we are about to begin Round #2 of Interim Maintenance.