I wrote this last Friday (which marked 6 months since Ethan finished treatment), but I didn’t manage to get it posted then. It’s now the beginning of September, and it feels fitting to get it up as we start Childhood Cancer Awareness Month.
I have received so many emails over the past few months from parents of current Leukemia warriors who have found support/comfort/information in this blog and also want to know how Ethan is doing now. I haven’t been able to respond to most of those…so being that today marks exactly six months since Ethan has finished treatment, I am writing a quick update post. While Ethan was in treatment, the information I most wanted from my internet searches was what it is like “after”, is the kid OK, does the fear of relapse subside, does normal come back. So I’m writing with these parents’ questions in mind — being as honest as I can while also hopefully offering some information, reassurance and hope.
After Ethan’s last chemo and port removal, the only treatment-related anything going into his body was his weekend antibiotic, which we needed to continue for another three months as his blood counts recovered. Ethan relished all the “firsts”since before Leukemia that happened for several months — e.g., first time in the ocean, first time at a bounce house, first glass of milk before bed. He greatly enjoyed his school’s quick celebration of this milestone (click here to see the video), and we all especially enjoyed ECBC‘s first annual charity run because it was not only a successful event for our cause but it felt like a big community celebration of how far Ethan has come (with our charity and with his battle). He was thrilled to go skiing in Oregon for the first time in a long time (and decided not to return to skiing but took up snowboarding instead). And he celebrated his 11th birthday without chemo on board–something he hadn’t done in four years, and was happy and full of energy during his whole party (also something we hadn’t seen for the length of a party since before treatment).
The immediate weeks following chemo were full of positive — but Ethan still struggled with lots of fatigue. End of treatment did not mean that his energy was back to normal, and I think that came as a bit of a surprise to him, even though we had discussed that. There was some tough conversation about the chances of relapse and the long-term effects of chemo at an end-of-treatment meeting (e.g, increased chance of heart disease, stunted growth, diabetes, infertility — the list goes on ), which made it clear that even if we never see Leukemia again, there are many increased health risks and health precautions that he’ll need to carry with him forever. Ethan also learned that his blood counts may take some time to return to normal, and that his energy could take several months to a couple years to return fully. His body had been slammed hard for years, and it often doesn’t bounce back so quickly. I think that part was toughest for him to accept — because fatigue was the most tangible liability that made it harder for him to keep up with his friends — socially, in sports, in everyday interactions. Shortly after this Ethan decided to quit competitive tennis (which he had done through most of treatment but took a break from in the last 8 months) and focus on developing his golf game. I think he felt like he couldn’t give tennis 100% effort/energy it needed to play at the level he wanted to, whereas for golf he could. I’m sure this decision was harder on me than it was him — I think he was relieved to stop, whereas I wish he could have been willing to do less comparing with what others are doing and continue in tennis with less elite goals. That being said, golf became his happy/safe/peaceful place during treatment, so his decision was also based on genuine beliefs about what he’s passionate about and how he wants to spend his time — not a bad thing.
Ethan had a terrific last few months of 5th grade. As the weeks passed, his teacher noticed an increase in energy — and while it still fluctuated up and down beyond what is typical, his baseline energy level still seemed to be higher. And without the hard steroid weeks, he enjoyed a few months without the extreme low energy/high emotionality that steroids caused. Ethan’s report card was as good as it could be (all 4s and Es across every subject and skill area, including PE which was the only area on prior report cards that had been “good” because he couldn’t put forth 100% effort). Ethan also exceeded grade expectations on state testing in all areas — which I am sharing here to highlight for other Leukemia parents that treatment does not take away our kids’ potential to think, to achieve, to thrive! (this was the kind of stuff I always wanted to know early on in treatment). That being said, Ethan has had difficulties in executive functioning skills — organization, memory, attention, speed of processing. All of these came up as deficits on neurocognitive testing the prior year (where he qualified for GATE but had gaps in these skills). Many Leukemia survivors struggle with executive functioning skills due to years of chemo to the central nervous system. We’re trying to provide extra supports for Ethan’s memory and organization while also wanting to promote independence and cultivate self-regulated learning, so it’s a balance to strike. That Ethan is a high-achiever and self-motivated should help to combat these difficulties, though they were visible enough in elementary school that I wondered how he would fare in middle school when executive functioning skills would be in higher demand.
I was pretty excited about Ethan’s 5th grade graduation — a day and milestone which carried more meaning because of what Ethan had gone through during most of his elementary school years. So, it was a bit of a disappointment when he went to bed the night before graduation with a fever, and woke up with the fever still. We gave him Ibuprofin and convinced him to stand in the ceremony , but he really felt crummy and could not participate in the rest of the graduation festivities so it wasn’t as joyful a day as I had envisioned. Ethan had grown accustomed to not making everything and even missing big things, so he handled it well. I was more bummed than he was.
Summer was really good. Ethan did a lot — he spent some time with friends, went on his Make-a-Wish trip to Hawaii, learned to surf (click here for a video of his surf lesson in Hawaii), played a bit of causal tennis, went to soccer camp, really enjoyed a week-long cooking class, played a lot of golf, competed in his first golf tournament, read a ton, and voluntarily did too much math. He still struggled with ups and downs with energy and emotionality, especially on our trip to Hawaii where we had a wonderfully packed itinerary. His oncologist thinks it may be a hormonal imbalance due to the effects of long-term chemo, so he is scheduled to have a fasting blood draw soon which may bring us to an endocrinologist. One of the many side effects of the poison he took for so long.
Ethan started middle school (6th grade) two weeks ago, and he couldn’t have had a better start! He went off on the first day with so much excitement and no visible anxiety, and he has come home every day with a smile and positive reports to share. He talks about being committed to being organized (and no longer being the “dumper” as Ethan called it, because he dumped papers into the bottom of his backpack) — we’ll see if this effort to be organized can last. Again for all the Leukemia parents, Ethan is in Honors English and Accelerated Math, and if he can stay organized enough, I’m confident he’ll thrive in these classes and all his others. So yes, Leukemia survivors can be great students, but I do think they have to be willing to work extra hard at some of the neurocognitive pieces that the chemo can affect (which if not managed, can make academic success difficult). To answer the many questions about a 504 plan, we met with the school counselor and Ethan’s teachers to continue Ethan’s 504 plan so that accommodations are in place in case they are needed. The 504 plan of course looks much different than it did throughout active treatment. It essentially allows for rests as needed, access to snacks and frequent bathroom breaks as needed (low blood sugar and frequent trips to the bathroom are still happening). More importantly, we want all of Ethan’s new teachers to know his history, to know that he will miss some school for follow-up blood work and doctor appointments, and to be on board with paying attention to any noticeable changes in Ethan’s energy, skin color, and engagement. Socially, Ethan seems to be finding his friends at lunch (he doesn’t have many classes with friends, but that doesn’t seem to bother him), and he’s finding the energy on some days to do the long walk home to a buddy’s house with his super heavy backpack. I couldn’t ask for a better middle school transition and hope it continues to go this well!
So that takes me to now, six months post treatment, and to the repeated question that has come my way from Leukemia warrior parents: After treatment, does Ethan seem normal? Does life get normal again? That question really feels impossible to answer in a quick blog post, because I could go in so many directions with it and answer it with respect to Ethan, me, the rest of the family, our life collectively. I think it’s impossible to answer because the word normal no longer feels relevant. Things are different; we’re forever changed by what we’ve been through; and the connotations of the word ‘normal’ (average, habitual, accustomed, regular, typical, natural) certainly don’t seem like what we’re living. I’ll try to explain with a few thoughts about Ethan. There are few visible signs of anything not normal. He needs to go in for regular bloodwork (which happens peripherally through his veins rather than through the port like it did through treatment, and which he handles beautifully, without a flinch). He will also have various other precautionary doctor visits (i.e., cardiology) and as described above struggles some with energy, though that is largely internal; Ethan hides it well, especially in front of friends and at school. Physically, Ethan looks like any other 6th grader, with the only visible battle scar being on his chest, where his port was. Ethan is shorter than almost all of his classmates, but it doesn’t stop anything that he does and I don’t think he perceives it as a negative (at least not yet). He seems to fit right in, especially as his fatigue shows up less and less at school and as his outgoing personality comes out more and more. A personality I didn’t see for nearly four years, for so long that I got used to not seeing it. It is such a relief to have Ethan again, not all the time but more and more. Beyond the few remnants of treatment, Ethan is thriving. And in some ways he is even better by having been shaped and surviving such a difficult path. He has grit, and perseverance, a ton of empathy for others going through hard things, is assertive and super good at self-advocacy, is self-aware, open about who he is and what he’s been through, accepting of differences, proud of the cause that he co-founded as a result of his experience (click here to learn more about ECBC). So much good. So much great, in fact.
But, Ethan also carries some heavy burdens. He knows the risks of minor and more serious health impacts that will make him need to be vigilant for forever. He knows he has to work extra hard to stay on top of schoolwork because of the neurocognitive deficits caused by the chemo. He knows why we go back for bloodwork and about the risk of relapse. Sometimes at night he worries about death, about not being here someday, about not getting to know his parents because he hasn’t taken the time to ask, about why Jews don’t believe in an afterlife. About why he can’t get himself to believe in an afterlife, religion aside and despite wanting to believe so badly.
Most tangibly right now, Ethan is trying to figure out socially where he fits in. He has a few really great friends who embraced him for who he was during treatment. But he also feels like he’s grown apart from some friends who he was close to prior to diagnosis but grew apart from as he didn’t have the energy to interact fully, to try to keep up, to be fun and funny (as he has said). He talks about how he hopes that these friends will give him a chance for them to get to know him as he recovers and can be himself (who he sees as a lot more fun and outgoing the he was during cancer). He’s very aware of the impact of less time together over years, and he talks about needing to work harder to connect with friends where he’s not their first choice. To put himself out there. To walk home with them even when he’s too tired and would rather have a ride.
Also recently Ethan has shared that he knows he gets upset too easily — by lots of noise, by pesty little brother, by a bad golf day, by kids not following the rules, by “assignments that are about memory and not good thinking”. He has always been a sensitive kid, but he thinks that since treatment it has gotten worse (he’s right — it has)… Last week, he shared that he think it’s a problem, that “life is short and [he] wants to be happy”, asking if he should go talk to a psychologist. Ethan thinks so much. He works so hard at it all. He’s wise beyond his years. But it’s a lot of heavy stuff for an 11 year old to carry. It’s OK. It is what it is. But it doesn’t feel normal.
That brings it to me. This post is already long and I don’t want to make it much longer. To add a few quick thoughts: I am full of gratitude with respect to Ethan’s being where he is and how well he is doing. Especially as we hit Childhood Cancer Awareness Month being off treatment, the first time that we have been “aware” but not in treatment. But, again, I can’t use the word normal to describe how I’m doing. Before cancer, I never really feared that cancer (or anything really bad) would happen to my kids. Now I can’t make that fear go away. It hit my kid even when the odds were so low. Like all Leukemia parents, I carry the fear of relapse with me months later (and I know I will for years) — now that he is statistically more likely to relapse than while on chemo and MUCH more likely to relapse than the likelihood of initial diagnosis. What I did not expect and have found even harder is that as the gratitude has increased, so has the fear. As Ethan’s energy and personality have come back, as I’ve heard him speak so honestly about how glad he is that Leukemia is behind him as he starts middle school, to see him caring so much about re-building some of the friendships — it feels like the more I’m grateful for where he’s at, the more I fear it all being taken away. This hit me hard last week when I was picking Maddy up early from school. I was inside the school office, and I overheard a kid say loudly with enthusiasm and resolve, “But technically…”, followed by a bunch more words that I didn’t catch. The voice sounded like Ethan, so I poked my head around the corner to find that it was Ethan walking with an unfamiliar kid, blabbering on with so much energy. My eyes filled suddenly with tears as I realized that my heart was equally full of joy and heavy with fear. To see him like that. Please don’t take this away. Let him live his 11-year-old life. Certainly not a normal wish for most people. But will be my single greatest hope, for a long time.
There are numerous other ways I could explain how I don’t feel like I’m living in the space of “normal”— such as self-care, friendships, parenting, self-definition. I know there’s work to do in all of these and more, and I’m trying, but it’s a process. I count my blessings every day. I feel more deeply than before. Positive and negative. Life feels more precious yet more fragile. Not normal per se. But good. Different than before, but good.
Before I close this, I’d like to give a super quick update on Ethan & Choco’s Book Club — the charity that Ethan and I founded during his treatment in response to his observation that patients did not have books or reading in their lives at the hospital. In May, we officially launched the first phase of our inpatient reading program at CHOC. Which means that we now have “bedside reading” volunteers who are reading with patients on the 5th floor (oncology, neurology). This is in addition to other ways that we are already getting books into patients’ hands, including our monthly book give-aways in the CHOC lobby as part of MaxLove Project’s BeSuper parties, our Read+Think+Thrive Boxes for new cancer diagnoses, and our annual Books for Treats booth at CHOC’s trick-or-treating event on Halloween. If you’d like to support Ethan’s cause, perhaps as a way to honor Childhood Cancer Awareness month, here are some ways you can do so:
- Donate a book off our General Wish List on Amazon to contribute to our Lending or Gifting Libraries. Click here.
- Donate a book for one of our Read+Think+Thrive Boxes for new cancer diagnoses at CHOC Children’s Hospital. Click here to learn more and to access the wish lists to donate.
- Donate a book for Books for Treats, so that patients stuck in the hospital can trick-or-treat for a Halloween-themed book! Click here.
- Donate any amount on our fundraising site. Keep in mind that $20 covers the cost of a new hardcover book for the Lending Library, $100 covers the cost of a book box for a new cancer diagnosis, and any other amount is welcome!
THANK YOU so much for any support you can give!