Ethan is now 7 weeks into Long-Term Maintenance (LTM) — the phase of treatment that he will be in for the next 2 1/2 years. LTM involves less hospital-based chemo, less severe immuno-suppression, and should be less hard on his body. However, it still entails a good amount of chemo. He’ll receive daily 6-Mercaptopurine and weekly Methotrexate (both oral chemos), five days per month of steroids (called a “steroid pulse”), and monthly Vincristine (I/V) and intrathecal chemo (via spinal tap) at the hospital. The goal is to keep his blood counts (the Absolute Neutrophil Count) within a certain range so that it’s not critically low or high enough that it’s a healthy environment for Leukemia cells to thrive. He will likely still experience some side effects, and the week of steroids each month might be especially hard. Ethan can return to school (as long as he is feeling OK and his class is healthy) and to most of his normal activities; however, we still need to avoid crowds, avoid sick people, and generally be careful about exposure to germs. I have learned from my online ALL community that LTM can be a relatively easy road or it can be rocky with many ups and downs, so it is unknown what the next few years will look like for Ethan. I’m optimistic that he’ll have more good and “normal” days than hard and isolated ones like in Frontline treatment, and while I know that I will carry the fear of relapse with me every single day of this phase, I hope that I can continue to focus on the present and all the joys of each day. We actually have an end-of-treatment date of February 24, 2018 (assuming all goes smoothly) — which is the greatest reminder that we have to live in the moment, because this journey is too long and too much of a chunk of Ethan’s childhood to live any other way.
After Ethan started LTM on July 20 and through the next 6 weeks until the end of August, Ethan had his daily oral chemo, two 5-day steroid pulses, and 2 spinal taps. The steroid pulses were particularly hard — he was highly emotional with intense mood swings and many meltdowns, fell asleep randomly during the days, had frequent night wakings, and complained of considerable bone pain. While we had some rough days, it actually felt like we got 6 weeks of a pretty good summer, filled with many days of getting out more and seeing more friends than Ethan had in a long time. Some highlights for him include:
- Ethan saw more of his buddies, whom he had missed so much.
- Go-kart racing with friends Quinn, Colin, and Andrew. That was Ethan’s first outing since October. I was all set to let him go by himself (without me), but I decided it was too much to ask his friend’s dad to make the call about whether the crowds were safe, germs, cleaning helmets, etc. Ethan had a great “normal” evening, and was so happy.
- National Ice Cream Day happened while Maddy was at sleep-away camp, so our family celebrated it on July 30. That has become an annual family summer tradition that the kids so look forward to.
- Cousins Sami and Max stayed at our house for a week so they could join my kids at tennis camp. We didn’t know if Ethan would be able to participate, and the coach said he could jump in and out as he needed to. He ended up making it through the whole week, with only some breaks when he was on the no tennis/conditioning rotation. He was so thrilled that he could join in with the rest of the crew. Definitely a top highlight of summer.
- We managed to get away for a vacation! We had to be close to a major hospital, and when we planned it we didn’t know if Ethan would have to return for chemo — so my parents rented a ranch in northern San Diego for us all (our family, my sister’s family, my parents). Ethan and all the kids had a blast. We went to the Zoo Safari Park, the boys played golf, they rode horses at the ranch, we also had a tennis court which we were on every day often in the evenings, went to the beach, and spent lots of time swimming and playing and hanging around. Ethan didn’t have to make any visits to CHOC, and aside from the daily meds and managing of emotions, it felt welcomingly cancer-free. A break from home life that we very much needed.
- Steve took Ethan to an orthopedic place that he works with and they made a guard for his port for him to wear when he is playing sports that could involve impact to his chest. He knows he has to be cautious because of his port, which worries him because he wants to return to basketball and taekwondo, as well as playground activities. Ethan came home sooooo excited about his new guard, and he wanted to show it off. I think it’s so awesome that he’s not embarrassed by it or any aspect of what he’s going through.
- The last 6 weeks were full of regulars from frontline treatment that continue to provide tremendous joy, including music lessons, coding lessons, golf with Papa, knitting with Nana, and fun in our backyard swimming, roasting marshmallows, and making pizza.
- The kids finally got in their asked-all-summer-for lemonade stand. They decided to have the proceeds go towards a new project that we hope to start soon at the hospital (creating a children’s library and read-aloud program). Ethan got such a kick out of approaching every customer to the stand and sharing his story (“I got diagnosed with cancer and when I was in the hospital getting chemo, they offered me a lot of technology but no books.”). They raised a couple hundred dollars in an hour and a half and were all proud of the official first funds towards this fundraising effort that we’ll hopefully get off the ground soon.
- There were many other summer highlights for Ethan, including: picking out a Polaroid camera as his “end of frontline treatment” treat, the family campout in our backyard, our day on Balboa Island at the Fun Zone and the beach, his grandparents’ visit from New York, two visits to the Sawdust Festival in Laguna and in particular the pottery making which Ethan really enjoys, seeing Mary Poppins, and buddy Quinn sleeping over (first friend we let sleepover since diagnosis).
So – all in all, lots of good times, and our initial weeks in LTM have been pretty good. That’s not to say that there haven’t been a new set of challenges. The oral chemo that he used to take in short segments and that made him very emotional he now will take every day for the next 2 1/2 years. It has now become his “new normal”, making him a more sensitive and emotionally fragile kid than pre-diagnosis Ethan. His interactions with his friends, his coping in response to frustration, his tolerance of sibling disputes, his perseverance while out and about — it all feels delicate and we’re trying to figure out how to walk the line between being understanding of his heightened sensitivities and different needs versus still needing to raise a kid with healthy coping skills who can regulate his emotional reactions. This is definitely hard right now, and feels impossible during his steroid weeks.
And He’s Back In School… The big unknown all summer was whether or not Ethan would be able to return for the first day of school. We knew he’d likely be back some time in the fall. And we knew that he would be missing an unknown amount of school once he starts (we’ve been told 20-70%, a huge range). We also knew that it could take several months from the start of LTM for his blood counts to stabilize within the desirable range and that, given the timing of when school started, he could be way too low to safely start. We talked often about the possibility of having to wait a few days or weeks before he started. He knew that could happen. But he sooooooo wanted to start on time. With his friends. Like every other third grader. So as the summer started to come to a close, he started to count the days until day #1. Starting at about 2 weeks prior, every day, at least twice a day: “How many days until school, Mom?” It made me nervous, because he wanted it so badly. Such a simple want, to be able to go back to school like everybody else, and I started to want it for him as much as he wanted it for himself.
The week prior to school starting, Steve and I met with the school principal and Ethan’s teacher (who is also my one of Maddy’s best friend’s mom and my good friend) to discuss Ethan’s side effects and what steps need to be taken in school to ensure his physical safety and as good of an academic experience as possible. We talked about his fatigue, his vulnerability to illness/infection which could be dangerous for him, his central line in his chest and safety issues with that, his neuropathy which can affect his ability to do lengthy writing tasks, the extreme emotionality he experiences during steroid weeks. We talked about the classroom accommodations that would help (such as rest breaks, desk placement, communication about other illness in the room so Ethan could be moved if possible or sent home if necessary, and more). All of this was written into a formal 504 plan, and Steve and I both left feeling very supported, like it would be a team effort to make school work for Ethan. And I felt very fortunate that my close friend is his teacher. Someone I can trust and who I knew would make sending him off each day a little easier.
After a weekend of frequent counting down and so many emotions that I wondered if his blood counts had totally crashed, Monday came — the day before school was to start. We went in to the hospital early for bloodwork, Ethan knowing that if his counts were too low, he wouldn’t be able to go the next day. The nurse told me she put the order in for STAT and I’d get the call that morning. But the morning came and went, and I became increasingly nervous that 4 :00 would come (the time when the kids’ classes would be posted) and we still wouldn’t know. I very much did not want to have to bring the 3 kids to school to find out their classes with Ethan still not knowing whether he’d get to go. Finally, at around 3:00, we got the news that Ethan made counts and he was good to go the next day. Which resulted in the first tears of happiness I had shed since October. Ethan was ecstatic. He lit up and remained that way for the rest of the day.
At 4:00 we headed to the school for the kids to all find out their teachers and which friends were in their classes. Ethan already knew who his teacher would be, but he was excited to learn about the kids. It turned out that most of his best buddies have the same teacher, which made him happy. So did being able to tell them that he’d be at school the next day. It was a great afternoon.
So Ethan went off to the first day of school last Tuesday. His excitement was tremendous. He was dressed and ready to go super super early. He was all smiles. When we arrived he headed eagerly to his class, said goodbye when it was time, and went right in. He was all good! Me on the other hand — I felt like a mess inside. It was hard to say goodbye. I lingered around his class for too long. I missed saying goodbye to Maddy and Caleb (lots of guilt). I haven’t dropped him anywhere since he was diagnosed — I’ve been in charge of his daily care almost every minute of every day minus some time with my parents, and it was hard to let go. I was nervous about leaving him in a germ-infested setting. I was nervous about his emotions, how he’ll cope. About how he’ll integrate with others, whether he’d feel left out. Whether he’d have the energy to last all day. I was sooo thrilled for this next step. But it was hard to send off my kid with cancer, for a whole day away from me. It felt scary. And I imagine on some level it will feel that way every single day for the next few years. Again, I’m so grateful for his teacher (who did text me midday that he was doing great).
Ethan came out of school that first day super excited. He said he had a great day, loved his teacher, played with his friends at recess, and couldn’t wait to go back. He said the highlight of his day was when he ran onto the soccer field and some friends from another class “chanted [his] name as he ran on the field.” He likes to be noticed, so I was tickled that that happened for him.
Day 1 happened, and then so did the whole first week. Ethan went every day for the full day, loving all of it. I received a few texts from his teacher that he was tired and that he chose to read during recess because he needed to rest, and he came home super tired with a full range of emotions (which I imagine he works hard to hold in all day and then has to let it all out when he’s home). So afternoons at home were somewhat hard. But the school part was all positive. We are off to as good of a start as I could have hoped for.
I know it won’t always be such smooth sailing. We’ll have to miss days because of side effects or steroids or too many sick kids to put him at risk. I’m sure we’ll have some issues come up at school and some ups and downs with friends. I know there will be hard days. We’ll count our blessings on the good ones, and we’ll get through those that are hard. I think what weighs most heavily is how much Ethan just wants to be “normal”, and how hard he has to work at it to sorta get there. He wants to play all the sports at recess even though he’s exhausted. He’s insisting on playdates even though I won’t allow it right now — telling him that first he has to adjust to being back at school. He wants to return to tennis clinic full-time like a few of his best friends do, but I’ll allow it part-time, and even that is dependent on how tired he comes home. On his own, he does his push-ups and sit-ups and weights so he “can make up for the fact that [I] have Leukemia and grow up to be strong.” He works super hard to hold in his emotions so he doesn’t cry in front of his friends. “Being normal” is effortful for him, and that is a hard reality for me to accept. During Frontline treatment we weren’t out and about enough for it to be an issue nor did I have the space to think about it. But now that every bit of life isn’t jammed up with Ethan’s treatment, there’s room to see the bigger picture. Childhood is hard enough, but that he has to go thorugh the next few years with such a big handicap (the effects of ongoing chemo and steroids) — that just makes me hurt for him.
That being said, as we wrap up this first week of school and I write this entry, my greatest emotion is gratitude. That he was able to go last week, all week. That he was gone for 10 months and went back, just like that, with no fears or anxiety, just 100% eagerness and confidence. That he has allowed me to be so proud of his strength and attitude every step of the way.