I haven’t written a post in a long time — the more time I let go by, the more daunting the task of writing feels…and so I wait even longer. In May, we hit a bump in the road at the beginning of Delayed Intensification (DI), and at the time it felt like too much to write about. Now that we have long moved forward and are officially done with the DI phase, I’d like to get summarized the last couple of months before Ethan heads into Long-Term Maintenance. I’m not super up for re-visiting some of the details, but in the interest of wanting to be open about our experiences and tell Ethan’s whole story, I will try to share without elaborating on all of the nuances.
DI Part 1. On May 5, Ethan began part 1 of DI, the last phase of “frontline” treatment before Ethan enters into long-term Maintenance (which will entail less intense chemo and should bring more normalcy to our lives). The phase began with a spinal tap with intrathecal chemo, other chemo through his port (Vincristine, Doxorubicin), and steroids. That first day went smoothly, though the effects of the steroids kicked in immediately — the hunger, headaches, emotionality/irritability, leg pain, and altered sleep/wake cycles were in full force and made for an intense first week.
A few days into DI, we headed to the Outpatient Infusion Center for Ethan’s next dose of Erwinia (as you may recall, two months ago he had allergic reactions to two other forms of the drug, but then he did OK with this form called Erwinia). Since he had done OK with Erwinia, I wasn’t particularly worried about it. However, within 5 minutes of the infusion, Ethan again turned red and said he couldn’t breathe. The infusion was immediately stopped and we were told that the Erwinia would also be pulled from his protocol — which would mean he would not receive the rest of the Asparaginase in his treatment protocol since he now appeared to be allergic to all forms available to U.S. Leukemia patients. We were told by one of our oncologists that not receiving the rest of the Asparaginase shaved off about 10% from Ethan’s survival rate — a very difficult thing to process. Because a certain type of antibody to the drug (called neutralizing antibodies) came back negative (meaning if we could get the Erwinia into him safely he might be able to reach therapeutic levels), we considered with our doc whether we could re-challenge Ethan with the chemo using pre-meds in the PICU. She felt it was far too risky, as did the expert in LA and the top expert at St. Jude with whom we consulted. So we tried our best to accept the situation and move forward, knowing that the treatment for Leukemia involves a lot of other chemo and praying that this won’t end up affecting his outcome (something we will not know for years).
The next few weeks were relatively easy. Ethan received the rest of his chemo and steroids. While the days that Ethan was on steroids versus off were blatantly more difficult, he seemed to be tolerating this phase that was supposed to be soooo hard pretty well, which we knew was likely in part because he couldn’t get a significant chemo that would have contributed to the severity of the side effects. Week 4 brought a welcomed break from chemo and steroids. Ethan was feeling good and happy, and he was given the go ahead to go to school for Open House, a school Flag assembly, and an hour of math — his first visit to the class since he was diagnosed in October and a much needed dose of normalcy.
A couple days after Ethan’s visit to the school (Sunday 5/31), Ethan started with a fever so we headed to the ER. He ended up testing positive for Influenza B and in the hospital for a week. He received Tamiflu, a z-pack, and antibiotics, and we were worried about a secondary infection such as pneumonia which could be very serious for him. Thankfully that didn’t happen. I attributed the hospital stay/Influenza to the exposure that happened during his visits to school but didn’t regret sending him — the visits had him smiling from ear to ear and provided much needed food for the soul. It did make me nervous about the balancing act that’s going to be ever-present for the next three years once Ethan returns to school. Steve and I agreed that he wouldn’t make any more visits in the last 3 weeks of the school year (the risk was worth it once, but not again while still in the ‘hard part’ and still very immuno-suppressed)
DI Part 2. Ethan finally made counts to start Part 2 of Delayed Intensification on Friday June 12 (about a week and a half delayed due the Influenza and associated lowered blood counts). It is known as “Day 29” of DI, and it was a super long day of chemo (as expected). We were at OPI for 8 hours, where Ethan had a spinal tap (which, as a reminder, is how he receives intra-thecal chemo to his central nervous system), as well as two other chemos (ARA-C and Cytoxin). Ethan received a lot of chemo the next couple of weeks (and many visits to the OPI). Starting with Day 29, he had 4 days in a row of chemo infusions with a few days break and then another spinal tap and four more consecutive chemo days. He then went back on the oral chemo and had once a week Vincristine for two weeks — which could have meant fewer trips to the OPI, though that didn’t happen because he also ended up needing four blood transfusions during that time (two blood transfusions for low hemoglobin and two platelet transfusions). We knew to expect that Ethan might need those at the end of this phase, when his body had been hit hard with so much chemo. These couple of weeks literally felt like the ultimate juggling act with all the end of school activities. Maddy’s class play, the school carnival, Caleb’s birthday party, and the last day of school picnic all fell on days that Ethan needed to be at the hospital for chemo — thanks to my amazing parents I actually felt like I was able to be there for the important parts of Ethan’s care as well as Maddy and Caleb’s special events.
And yet another hospital stay. Near the end of Delayed Intensification (on Tuesday 6/30), Ethan again went to the ER with a fever and was admitted to the hospital (hospital stays are common at the end of DI due to super low blood counts and tired bodies after so much hard chemo). He had a fever on and off, ended up with an eye infection, and his counts dropped to an ANC of zero, requiring two more blood transfusions (one hemoglobin and one platelet) — but he never really felt that bad. On Fri 7/3 he received his last dose of chemo for this phase (and for all of his frontline treatment), and he ended up getting out the following Tuesday once the fever was gone and his blood counts started to go up. He did manage to spend 4th of July in the hospital — which made us wonder whether he has deliberately aimed to spend all the major holidays in the hospital over the last many months! On Thursday July 9, Ethan was officially done with DI and frontline ALL treatment. Now we are waiting for his ANC count to recover so that he can start Long-Term Maintenance — which hopefully will happen soon!
Many Highlights! This phase definitely had some bumps, but there were so many wonderful highlights that brought so much joy. Here’s what stood out:
- We did not buy tickets for the MaxLove Angels game event because it was on the same day as a spinal tap and chemo. Ethan ended up feeling OK to go, and at the last minute we learned from SuperMax’s super mom Audra that she had tickets for all 5 of us. Because of our connection with MaxLove, Ethan got to watch the Angel’s pre-game batting practice and received a signed ball and gloves from a player. We all enjoyed the game — it was definitely the most significant outing we had had since Ethan’s diagnosis.
- Ethan went to school on Teacher Appreciation Day just for the drop-off time wearing Oregon Ducks shirts with his buddies (his teacher’s daughter goes there and is a huge fan). It was his first time stepping on campus since he was diagnosed 6 1/2 months earlier so this was a treat for him.
- In the middle of May, Ethan attended the 2nd grade award assembly and received the “Mustang Strong” award from his teacher. Mrs. Lukkes gave a wonderful speech about Ethan, and he left the assembly with a huge smile on his face. Check out Ethan receiving his award here:
- Maddy and Ethan were excited to participate in a bit of fundraising specifically for Leukemia through the 3rd graders’ Lemonade War project. Maddy came home saying that she wanted to raise money for the Leukemia and Lymphoma Society (LLS), but that was not one of the charity options that kids would be voting on. She asked Ethan if he would make a video to share his story and advocate for the LLS as one of the charities, and Ethan embraced that idea, writing his own script and recording himself even though he was on steroids and not feeling well at all. The video was shared with the 3rd graders, and the students voted for 1/2 the proceeds to go to the LLS (and the other half to MaxLove). A week later, we were able to rush home from chemo so Ethan could catch the end of the lemonade sale on campus (he bought from the girls’ team!), and a few days after that he was awarded a check for $460 for the LLS. Maddy and Ethan definitely learned a little about speaking up to make a difference. Here’s the video that Ethan made to encourage donations to Leukemia (you can tell that he’s not feeling so well):
- Although Ethan hadn’t attended school since he was diagnosed in October, he did visit his classroom for Open House, and it was a more positive experience than I anticipated it would be (I didn’t know what to expect). As he walked around the room to check out all of this work, he really enjoyed discovering that he had done almost everything that his classmates did. He was very proud and
felt very much part of his classroom community. And for me, it was the hard evidence showing how hard Ethan has worked all year — going up to his room with his teacher at the end of the day, close to dinner, while siblings are home playing, and usually not feeling well — but bucking up and working hard. Definitely a highlight!
- On June 5, Ethan went to Friday Flag Assembly where many kids in the school were wearing orange to support him. He felt very supported and was smiling ear to ear at the assembly. Afterwards, he visited class for an hour of math (first and last classroom visit of the year!). He loved being in his classroom again. As he left, he commented that “this day felt sorta normal”, which made him happy as well as missing his old normal life. Here’s the video of him at the assembly:
- Ethan’s last day of school was the greatest highlight of the last couple months. There was nothing particularly different about his last day, his teacher came for 1.5 hours of home schooling and then he was done. But being officially done with the year was an emotional moment, and I was filled with so many strong emotions — pride, relief, so much gratefulness for his teacher. When Ethan was diagnosed, we also learned the same day that he had to abruptly stop attending school, and that was shocking and terrifying as well. Ethan ended up not just making it through the school year but actually having a great school year, one that I know he’ll look back on as a positive part of his battle with Leukemia. The true highlight was in the thank you/goodbye hug with Mrs. Lukkes — I literally didn’t want to let go because it meant the official end of her role as his teacher this year. She kept him learning and engaged (even at times when he was feeling crummy and didn’t want to work with me), connected to his classmates, and feeling special — truly the greatest gift in the world. In his goodbye and thank you letter to her, Ethan told his Mrs. Lukkes that she was part of “the good in the bad” (meaning, one of the good things about his Leukemia battle). I felt so grateful that goodbye to that experience was so very hard.
- Ethan didn’t end up getting out of the hospital for 4th of July weekend, but he was excited to meet a star of Teen Beach Movie 2 and get a sentence of air time on the news! Check out this clip…he’s approximately the 3rd kid from the start:
- We just had a great family outing to see Matilda the Musical in L.A. Ethan sat in box seats that kept him away from the crowds, and we all enjoyed the night out together.
- “The regulars” have continued to be highlights for Ethan. Online U-Code lessons, golf with Papa and sometimes cousin Max, swimming at home with sibs and cousins, guitar lessons with Luke at home and music therapist Eric at the hospital, visits from cousin Jamie, Facetime with his class until school ended, reading, and knitting with Nana.
- He had a few friend visits in the last couple of months which always make his day (thanks Quinn, Oskar, and Aidan), though friend time has been so limited recently due to his low blood counts and hospital stays. Hopefully that will change quickly!
Wrapping up frontline treatment!
Now that I’ve caught up on this blog, it feels like I can officially say that we are done with Frontline Treatment. It is a tremendous relief to be done with the chunk of phases that are supposed to be the “hardest” part of Ethan’s treatment. When Ethan was first diagnosed last October, the description of Frontline treatment as 9+ months of intense chemo was so daunting. It’s really amazing how incredibly fast and painfully show that has gone by. In 9 1/2 months, it feels like we’ve experienced a lifetime of highs and low’s, coupled with stronger emotions than I ever imagined possible.
While it’s definitely a relief to have “the hard part” behind us, the allergic reactions (with a significant chemo out of his protocol) combined with the fact that he was a slow responder in that first month after diagnosis (meaning his specific Leukemia isn’t quite as sensitive to the chemo as it could be which has some prognostic value to it) have caused both Steve and I to carry around an unexplainably deep-seated fear of the unknown and of the success of this long treatment path, an unknown that unfortunately won’t be answered for us for a long long time (including for years following treatment). Looking back, it’s remarkable how we’ve had to adjust our acceptance of it all and learn to process each bump along the way. At diagnosis, we were hoping for a low-risk treatment category with success rates around 90% (which even that felt utterly terrifying back then), then when that was out of the question we were hoping for standard risk which would bring down that number to around 88%, then Ethan was identified as “high risk” which brought the number to somewhere between 80-85% (varies depending on the source), and then with the allergic reactions and removal of Asparaginase the stats dip even a little lower than that. Ethan’s chances are still very good, but each of those was terrifying. For each, we moved from fear to processing to adjusted thinking and moving forward. Although the fear is there every single day, we’ve had to learn to push through it and not let it consume us. To focus on the present and the challenges of each day and all the daily joys. Because there is no other option. This journey is too long, too much a chunk our kids’ childhood to let fear win.
So now, as we say goodbye to Frontline Treatment, we are moving forward with as much hope and optimism as we had at the start of this. Ethan is looking good and strong. And he’s so positive. We move forward with the philosophy that we have all learned from him — that we have to look for the good, focus on the good, and let that get us through it all.
To wrap it up, I’ve totaled up a few stats from frontline chemo:
- # of overnight hospital stays: 11
- # of in-patient nights in the hospital: 55
- # of spinal taps: 12
- # of chemo infusions: too many to count
- # of allergic reactions: 3
- # of blood transfusions: 17
- # of platelet transfusions: 12
- # of highlights and joyful moments: Many!
- Amount of support felt from family and friends: tremendous, and we are so grateful!!
Ethan’s blood counts are super low right now, so we are currently waiting for them to go up before he can start Long-Term Maintenance. Hopefully that won’t take too long, as I always get nervous when there’s a break in between chemo and then especially when that break gets extended. With low counts and restrictions on what he can do, our challenge this summer is to keep Ethan busy and happy while his siblings are off doing all their fun summer activities. When his counts start to go up, that task should get easier as he is able to do more and more.
Stay tuned for an update as soon as Ethan starts Maintenance…