The past two weeks prior to this have been really positive from a chemotherapy perspective. Two weeks ago Tuesday (Feb 3), Ethan went into the hospital for the first of six infusions of Erwinia (an un-pegylated product with the important drug Asparaginase — which requires 6 infusions to replace a single dose of the pegylated form that he was allergic to). I was nervous, because the last two attempts of the pegylated forms resulted in quick allergic reactions — so I was worried about the possibility of this not working for him either (knowing there are no other forms for him to try) as well as what another allergic reaction could mean for him. Due to the risk of another severe reaction, Ethan was now at the hospital rather than the Outpatient Infusion Center, there was a rescue cart prepared especially for him right outside of his room, and he had a ton of attention from the doctors and nurses. Gratefully, the first day went well (despite very long). No allergic reactions, and no terrible side effects. The infusions on days 2 (Thursday) and 3 (Saturday) went similarly — I was nervous for a reaction (because apparently antibodies to the drug can develop at any point), but he had none aside from exhaustion and sleep. The second week of Erwinia infusions (last week) went well too. On Monday Ethan had lots of nausea and vomiting (the first time he’s vomited since he was diagnosed), but he made it through infusions 4, 5, and 6 on Monday, Wednesday, and Friday — thus getting all of the drug into him that is such an important part of his treatment. Steve and I were very relieved that the Erwinia worked for him. And that it appears that he can get it again when he’s due for it later in his treatment. Such good news, especially in contrast to where we were two weeks ago.
As of last Friday (Feb 13), Ethan is officially done with Consolidation phase chemo. He has two possibly more difficult phases in front of him before his treatment should likely get easier; combined these two phases are expected to take 4-6 months. He was due to start the next phase, called Interim Maintenance (IM) this week, but bloodwork on Tuesday showed that his ANC (Absolute Neutrophil Count, the part of the white blood cells that fight infection) was too low to start (it was in the low 300s, and it needs to be at least 750). That was frustrating news, as he is already two weeks delayed due to the two allergic reactions. So this week we have been on a chemo hold, and levels will be checked again tomorrow (Friday). Hopefully, Ethan’s counts hit 750 tomorrow so that he can start IM on Monday. That would make for a three week delay; I’m praying it’s no more than that.
Without chemo for a week, Ethan has felt pretty good and had lots of energy, so in that respect this delay is a positive break. Though his blood counts are still so low (in the critical range), so I think it’s especially frustrating to him that he feels good but is so limited as to where he can go and whom he can see.
A Quick Sidenote. Two plus weeks ago after Ethan had an allergic reaction to the chemo (PEG-Asparaginase) and then again to a new from of the chemo as part of a brand new study (PEG-Crisantaspase), we were told by the local principal investigator of the study that it would be too dangerous for Ethan to try option 3 (I/V Erwinia). Steve and I had done lots of research, and our reading made us wonder whether Ethan might be allergic to the PEG (a carrier molecule for the drug) rather than the drug itself that is so important for starving Leukemia cells. We asked our oncologist to consult a top Leukemia expert in LA, and that inquiry resulted in antibodies testing which revealed that Ethan in fact did not have antibodies for the asparaginase drug (the drug he needs). I’ve explained this already in an earlier post (click here), but I’m feeling the need to communicate just how important our own research and advocacy ended up being for Ethan. Without it, Ethan might not have even had the opportunity to receive this drug — which now, two weeks later, is successfully in him! A message to everyone, regardless of the health issue, to stay on top of it and stay informed, because the parent advocate is a unique role that you can’t assume anyone else will take on. Also, interestingly, Ethan’s case resulted in the national study being halted so that his blood could be analyzed by the pharmaceutical company and the experts, and upon further analysis, the study has been closed and the 2nd drug that Ethan reacted to is no longer available to anyone in the country. The reactions and delays were definitely unfortunate and scary for us, and I wish we didn’t go down that path — but we’re glad that at least something useful seems to be coming out of it –perhaps the need for more proactive antibodies testing or the development of a reliable test for PEG antibodies. Or maybe a new product altogether. Regardless of what comes of it, again this is a reminder that as parents we need to be active participants throughout this journey — stay informed and be vocal and collaborate with the docs — not just view our role as responding to decisions and receivers of care.
Also in the last couple of weeks… We’ve now learned that getting through this journey for Ethan is as much, perhaps more, about getting through and managing all the side effects of all the toxic drugs he is receiving. Tiredness, nausea, jaw pain, neuropathy, allergic reactions, emotionality, sleep disruptions, neutropenia — the list is long and always changing. Over the last couple of weeks, Ethan’s appetite has been especially poor. Even when he’s hungry and picks the food he wants, when he actually sits down, it is often difficult to get him to eat more than a couple of bites. He has now lost about 5 pounds, and he looks so thin. We are trying to pack in high quality/high protein foods, and we’re also going to start him on an appetite stimulant to see if that helps. I know this is normal for chemo, but it’s still hard to see his body changing and being affected by it all. And especially knowing that he has so much hard stuff yet to come.
Another new thing to emerge is night terrors — something that we’ve never seen among any of the kids. Every night a few hours after he falls asleep, he cries out — very worked up, inconsolable, so distressed. My understanding of night terrors has been to leave kids alone during them, but he gets increasingly worked up and seems to respond better when I intervene. Ethan doesn’t remember them at all in the morning, but he says he thinks it’s related to him feeling alone and scared in his room by himself. I learned quickly that if he is in my bed they don’t happen — so now every night after a handful of them, he ends up in our bed. This is literally the first time in all three of our kids’ lives that we’ve had a child sleep in our bed; we’ve always been so protective of our space (until 7am!). Now, I just want to comfort him, and I’ll worry about breaking the habit later. Apparently, this is likely related to a combination of anxiety and possibly the meds. We’re working on a referral to a neurologist at the hospital who specializes in sleep difficulties.
Last week we went to Children’s L.A. to meet with Dr. Gaynon, a top expert in childhood Leukemia whom we had wanted to meet since Ethan was diagnosed. We really like our local oncologist — but the history that Dr. Gaynon has, with both patients and the research, just gives him a whole different level of authority. He confirmed Ethan’s treatment plan and that Ethan is in good hands, and he told us to contact him with any questions or concerns that arise, so we left feeling good about having him as needed in the future.
Another issue to come up in the last couple of weeks pertained to Ethan’s home schooling. It caused some stress for me but I think it’s resolved now. Ethan’s home school teacher is his 2nd grade classroom teacher, whom we adore and feel so fortunate to have. She has thus far come to the hospital a handful of times when Ethan has been there inpatient — she has typically come when he has already been there for a few days and texts to ask if Ethan is up for doing some work. His response to her (unlike his response to me) is always yes. A couple of weeks ago, as his teacher was on her way to visit Ethan at the hospital after he had been there for 3 days without any schooling, she was told by the district nurse that she cannot provide his instruction at the hospital because the hospital is in a different district than the one that provides his home schooling (though the hospital is only 1-2 offramps away). This made me nervous. If she’s willing to come some, and if that’s what is best for Ethan, how could that not be allowed??!!
I did some research and learned that the California Department of Education DOES NOT restrict her from providing instruction in a different district. The code only says that the district where Ethan resides over the long term is responsible for providing his schooling, with no specifications about where that needs to happen. Tustin Unified is responsible for his schooling — he resides at home over the long term and is a TUSD resident, taxpayer, and student with only short stays at the hospital. In my research, I also learned that the district can come up with its own more narrow policies, including restricting where the instruction may or may not happen. But knowing that instruction in the hospital should be possible according to state code, I shceduled a meeting with the district nurse and program administrator, and went in somewhat defensive and ready to fight this one if needed.
At the start of the meeting, we were told that when Ethan is at the hospital, he is expected to get instruction from the hospital teacher rather than his home schooling teacher. I expressed that is not a good option in my mind. We had tried it twice — she handed Ethan a few worksheets — unconnected to Ethan’s classroom or the specific curriculum or Ethan’s capabailities. Certainly not what will challenge or engage him. I would MUCH prefer occasional visits by his teacher than frequent hospital visits by the hospital teacher, as it is no question that his teacher is best able to provide instruction that is connected to Common Core, his actual classroom curriulucum, and his needs. Better than anyone, she can provide continuity from day to day, knows his thinking and can challenge him, and keeps him engaged even when he’s at the hospital. I also shared the example from the week prior when Ethan was at the hospital and did not want to do any schoolwork for me, yet when he heard that his teacher was coming, he was eager to do his work to prepare and then insisted on waiting for her in the lobby of the hospital. And then he worked hard for a good hour. There is no replacement for that, and I shared that I was not willing to let that go. It didn’t take long for them to acknowledge that the code is in fact written for long-term stays at home or hopsital, not going back and forth, and that they’re fine with the teacher going to the hospital if she’s ok with it and if it’s only a moderate amount. It felt good to settle that issue before we start a series of months with many anticipated overnight hospital stays.
The tone of that meeting with the district was actually much more supportive than I had expected — it felt like they were genuinely concerned about the best interests of both his teacher and Ethan. It was good to have a conversation, which was more general than just about the hospital issue, and to know that there is support there if other issues come up. That being said, this was another example of the importance of research and advocating, without which different decisions very well could have been made that might not have given Ethan what’s best for him. I can’t resist sharing this one more thought: At the meeting, one of the comments to me was that “Ethan’s health comes first”, said in the context that I shouldn’t worry about the academics. It was said with the best of intentions, but this is my problem with it. Ethan’s going to come out of this, and he’s going to return to his school with his peers. I’m not concerned about him getting the breadth of the curriculum, but I am concerned about keeping him engaged and loving learning and continuiung to grow cognitively. I can’t imagine what his life would look like right now if school (formally, with is teacher) and some learning time with me (through things like reading aloud and science and fun writing and good conversations) weren’t a part of it. This is too long of a journey to say “I’ll focus on the illness and worry about the education part later”. Ethan knows that school and learning is part of becoming a healthy individual — when he feels up to it, it’s something that he wants and expects, and throughout this journey I’ll do what I can to ensure that good learning is always part of his life.
Some Recent Highlights…
- We finally got FaceTime going in these last couple weeks with his class at school. Four times now — Ethan has gotten to work “with” his math partners as well as his reading partners, share his work with the class, call on other kids to ask questions about his writing, and listen to a class read aloud. He’s even done a couple sessions from his bed in the hospital while receiving chemo! Things have gotten isolating lately with so much treatment, so that he can do this is so wonderful. He has a smile on his face the whole time.
- The weekend before last, Ethan’s counts were good enough for him to watch his basketball team play in the district finals. He was so excited to go that he had his basketball uniform on from the moment he woke up at 7am. He ended up getting to practice with the team before the game and made some shots so he felt good. He even walked away with an unexpected trophy (and a huge smile).
- Ethan (and the rest of the family) enjoyed swimming in our new pool for the first time last weekend. I’m feeling especially grateful for our new backyard and pool now that we’ll be depending on it so much in the coming months and years (Ethan’s not allowed to swim in public pools until his port is out in 3 years!)
- Ethan’ still enjoying some of the “regulars” that we work hard to include in his life, including golfing with Papa; Mad Science lessons; guitar lessons; U-code sessions; cousin time with Max, Sami, and Jamie; and friend time (most recently, with Quinn and Colin). The social time has gotten more difficult, so when he does spend time with cousins and friends, it really is a great highlight for him.
- Thank you Zack Adzich for your science package! Zack, a buddy from school, raised money for the materials to do experiments with different kinds of sodas and antacids, and asked Ethan to blog about the results. Ethan is very excited to do this, thank you Zack!
- Ethan is LOVING all the hits and followers on his science blog. Click here to check it out if you haven’t!
- This is a highlight for me… Last week I so enjoyed watching Maddy play her first set of tennis. (She just started USTA Team Tennis). I don’t know if it’s because the tennis took me to a time of my childhood that was normal and safe and familiar (and so completely away from cancer), or if I was just proud to watch my daughter play her first set — but for two hours I was completely absorbed in coaching the girls through the set, and it was such a joy.
- Another highlight for me… I’m constantly amazed by Ethan’s attitude and “let’s just do this” approach. He’s such a trooper, just doing what he has to do, day after day, never complaining or feeling sorry for himself. More early hospital visits and poking and chemo and watching his sibs going on with all their stuff. He’s just doing it, with so much grace and strength, which is a great inspiration to me. He just finished reading Lemony Snicket’s A Series of Unfortunate Events, and at the end the narrator makes a comment about how people have to deal with unfortunate situations, even if they don’t understand why. Ethan responded: “This reminds me of my stupid Leukemia. I don’t know why I got it, but now I have to just deal with it.” Remarkably, he self-corrected himself and took out the word “stupid”, saying I shouldn’t call it stupid because there is some good things about this.” I haven’t gotten to the bottom of what he considers those good things to be.I’m praying that Ethan can take the same attitude and strength into the next difficult phases of his treatment.