It’s Monday night, and I’m writing this on the evening before Ethan starts the next phase of his treatment, called Delayed Intensification. A phase I’ve worried about since diagnosis, though I will save my thoughts on it for my next post. Here I’d like to re-cap the last few weeks — I’m aiming for quick because I’m tired, I think more so than usual. Being the eve of the next phase and filled with angst about what it will mean for Ethan, the details of the last few weeks feel irrelevant right now, though I know if it were just last week I’d want to write it all. Let’s see if I can update quickly and move on…
Ethan is done with the Interim Maintenance (I/M) phase of his treatment (the only phase of chemo with planned in-patient/overnight treatments). Three weeks ago (Tuesday 4/14), he was admitted to the hospital for I/M round 4 (of 4). As in weeks prior, we were anticipating (and admittedly, for his sake, sorta hoping) that he might be delayed a bit so he wouldn’t spend his birthday in the hospital — but this time he actually made counts on time, so we knew at admit that Ethan would have to spend his actual 8th birthday in-patient. A bummer, but he handled it well (and I was grateful we got in a good celebration the weekend prior).
As in the prior rounds, Ethan spent the first day receiving pre-hydration, and by late afternoon he received Vincristine (brief chemo infusion) and then the 24-hour high-dose Methotrexate infusion. After 24 hours, the rescue drugs to flush the Methotrexate out of his system were started, and Methotrexate levels in his blood were checked every 24 hours until they dipped low enough so that he could be discharged. On day 2 of the hospital stay, Ethan’s ANC (Absolute Neutrophil Count) dipped to 600, below the cut-off for oral chemo — which means that we had to hold the daily oral chemo. In earlier rounds we had to hold it but not until about a week later, so this was the earliest that it has been held. We were told that he would not be able to start it again during this phase unless subsequent bloodwork shows that his ANC goes back up. This was frustrating news, as Ethan had already missed so much of the oral chemo and my understanding is that it works synergistically with the Methotrexate. I need to not focus on what he misses and believe that he’s getting so much chemo for so long that he’ll be ok (and that all kids who make it through this successfully likely miss some of the chemo here and there).
Wednesday and Thursday were OK days with few noticeable side effects, except the usual over-tiredness that happens so quickly with overnight hospital stays. Ethan had a pretty good birthday day (see Highlights section below); we were glad he was feeling well enough to enjoy some visitors. Friday, however, was a hard day. His mouth sores started so he was uncomfortable and his small appetite got worse. And his Hemoglobin dropped so he needed a blood transfusion (the first transfusion he has needed during these in-patient stays). The transfusion couldn’t happen through his port because he was still receiving meds through it, so an I/V had to be placed in a vein in his arm, the first time we’ve had to do that since the port was inserted at diagnosis. Despite numbing his arm and using ultra-sound, his veins were difficult to find and Ethan received multiple pokes (ultimately, not in the numbed place)… not so much fun but E handled it well. He realized how grateful he was for his port.
For the first time, Ethan did not make it out of the hospital at the end of Day 4 (his Methotrexate level was still too high). So we had to stay an extra day. He was finally discharged around 9:00 PM Saturday evening. The family had all been in his room together eating dinner and awaiting lab results, and we all left happily knowing that Ethan’s planned in-patient treatment visits were complete. (assuming all goes well here on out!) Despite a few setbacks, this hospital stay was still pretty easy and Ethan’s spirits remained high. All four of the hospital stays in this phase were actually easier and quicker than anticipated. (-8
After returning from the hospital, Ethan had a couple week chemo break before the next phase would start. The first week was a little rough physically, and for some reason the night terrors increased and he experienced a good amount of generalized insomnia. During this week, two more visits to the clinic for blood draws showed that his ANC was still low, so we weren’t able to restart his oral chemo at all for the remainder of the phase (ugh). By Friday his ANC was down to 100 (super low), so we had to spend most our time at home and didn’t see friends. Last Sunday (4/26) marked the official end of Interim Maintenance. One more phase checked off. During the second week off from chemo, we were hoping that Ethan’s counts would recover enough so that he could venture outside the house with some fun outings before the next hard phase began. Unfortunately, his counts fell even lower (ANC of 40, essentially 0 which means he had no immune protection). This ended up being a hard week, because he was off chemo and felt OK and wanted to join his sibs, go out, see friends. We were told this would possibly be a good time to do something big, like Disneyland, before the next phase — and had planned for an adventure last Thur on Steve’s birthday. But his counts were too low, and we stayed put. Ethan became extra emotional and reactive , especially to me and Dad. I’m sure he was sick of being at home. And tired of me trying to do schoolwork with him. I’ve gotten pretty tired of our home as well!
By last Friday, Ethan’s counts started to go up. And amazingly, his ANC climbed above 750 today so that he could start tomorrow. It would have been nice if it had worked out so that he had a day or two of feeling good with high enough counts before he started… but, well, lots of things would be nice if only…
It has been 6 months! Last Tuesday (4/28), I realized that it had been 6 months since Ethan was diagnosed (on 10/28/14). Right after we got out of the conference room where we heard that he had Leukemia, I so vividly remember the nurse saying that they are “getting ready to transition Ethan to Oncology”. We were literally switching rooms, so that we were in the oncology portion of the hospital . It was an explicit acknowledgement that we were moving from one world to another. From a “before cancer” world to a world with cancer. From a world where we had the potential to be carefree and free (had I only appreciated how “free” we could be) to a life where it feels like we can never have that again. From a feeling of invulnerability to complete vulnerability. For so long I held onto the fact that being in the cancer world felt strange and surreal. In some odd way that made it feel like it wasn’t truly our world, as if it wasn’t something we were truly a member of or could own as long as it felt weird. Now, 6 months later, it’s just weird that it’s not weird anymore. We went to our first MaxLove event on Friday not just to support SuperMax and pediatric cancer but as a recipient of the support. We went to CHOC’s Festival of Life on Sunday to celebrate Ethan’s battle. It is our world, a world I never imagined we’d be in and yet one that I don’t imagine we’ll ever fully leave. Hopefully someday we’ll be able to co-exist in both worlds, with an approach to life that fuses the best of what each world has taught us. For now, I’m moving forward trying to own this world we’re in and make the most of it.
Some Highlights from the Last Few Weeks. Despite numerous hospital stays and uncomfortable mouth ulcers and low blood counts, the past several weeks were filled with happy moments and positives. Here are some of them:
Ethan ended up having a pretty good birthday in the hospital. He was thrilled that we were able to carry out our balloons-in-the-room tradition and wake up to a zillion balloons. His realistic fiction story was selected for Author’s Tea and he was happy to read it aloud via Facetime to the principal and other award recipients. He was thrilled to receive a visit from friends Leah, Coby, Davin, and Sophia. He enjoyed an hour of school with Mrs. Lukkes, who brought a yummy cupcake. And he enjoyed a birthday dinner in the hospital with family. It wasn’t such a bad day after all.
- Hospital visitors can make such a difference. Ethan finally got to meet Eric the music therapist. Eric visited a couple times during this stay — he played some guitar for Ethan and gave him some instruction. Ethan loved it! He also really enjoyed visits from cousin Jamie and Rabbi Leah.
- More time at home meant Ethan had more time to play board games with the family (which he loves). We played Life, Electronic Life (a new favorite that he received from his birthday), Clue, Othello, Mastermind, Sorry, Chess, Chinese Checkers. I think there may have been more peaceful moments than arguing…
- We all loved spending time with the Denes family. It had been too long, and the time together was a treat for us all!
- There were countless days where Ethan felt crummy and was in no mood to do schoolwork (at least with me!). Even on these days, somehow Mrs. Lukkes was able to engage Ethan in productive and positive schooling sessions. I don’t know how she does it. Ethan literally calls her “Magical Mrs. Lukkes”. So grateful for her.
- The past few weeks it has been difficult to see friends (due to low counts and so much illness going around), which has been hard for Ethan. I’m thankful that he has these non-family “regulars” to enrich his life that are so spirit-lifting for him: Guitar with Luke (Ethan’s guitar teacher and big buddy), U-Code with Matt and Jeremiah (E really looks forward to these sessions), Brian and all the interns at CHOC radio station, and “Awesome Ian” (whom Ethan has now had over twice to do science with him and hopefully we can arrange for more sessions before he leaves town — click here to read more). All of these put a big smile on E’s face.
- Outings with Papa have continued to be a constant highlight for the past 6 months — golf, the Brewery, bowling, Archies.
- The limit-less support of my parents has been remarkable. Calling it a highlight sounds too small; their time and love are so at the core of our getting through this on so many levels.
- Ethan was excited to attend the Class Act Family Concert (performed by the Pacific Symphony
Orchestra), which I think was the first school-related event he has attended since October. His counts were really low, so the plan was for Steve to go with Maddy and Caleb. As they were walking out the door, Ethan begged to go with a mask on and sit behind the back glass wall (in front of which is the audience). While going probably introduced a bit more risk, I think we found a “safe” way to make it work. He enjoyed being out among his schoolmates, and it was a reminder that supporting his health right now is a delicate balancing act wherein “low counts” can’t be the only consideration.
- Steve’s birthday celebration was low-key (not Disneyland as we were hoping for) but fun. Ethan got in some quality Dad time while Maddy and Caleb were at school, including building and starting to program Ethan’s new Lego robot (which he’s super excited about). We swam and made pizza and were glad that Steve’s birthday wasn’t spent in the hospital (as have been the prior 2 family birthdays)!
- The seed was planted in Ethan’s head (by Audra, SuperMax’s mom) that he should try to contact Ryan Seacrest (at his KIIS FM morning radio show) to ask him to join Ethan in the radio station (called “Seacrest Studios”) for a MaxLove event that was coming up at the hospital. Ethan fully embraced the idea and became super excited about the possibility. On his own, he wrote out a script for what he would say to whomever answered the phone as well as what he’d say if he made it on the radio, and he called tirelessly for three days in a row. Each day, he talked to a screener, telling him/her how important the station has been to him while at the hospital and informing the screener about the event he wanted to invite Ryan to. He never got put through to Ryan (and I ultimately encouraged him to stop trying). Frustrated and not wanting to give up, Ethan decided to put a post on Ryan’s Facebook page, and he also wrote him an email (which he hasn’t received a response to). It was a highlight for me to watch his bravery on the phone and his perseverance — though it was sorta heartbreaking that all his efforts didn’t seem to pay off. I’m sure he’ll want to try to get in touch with him in the future.
- Ethan was super excited to help out at a launch party for a new MaxLove/Cloud b therapeutic sleep/healing buddy for kids fighting life-threatening illnesses. Due to his low counts, he was not able to be in the middle of the action, but it was arranged (thank you Audra) for Ethan to do some announcing and crafting for the event from inside the radio station. He was able to help create a craft and share it with the patients who couldn’t join the event in the lobby. This was definitely a highlight for him. Check him out here.
- Last Sunday we were able to attend CHOC’s Festival of Life, which was specifically for cancer patients and survivors. This came at the end of a long 2 weeks of limited activity, and being outside, it was OK for him to join in fully. It was a beautiful day and good to be out; all the kids enjoyed.
- Ethan’s philosophizing has been such a light in this journey for me. An idea of his that keeps coming up is that “there’s not always bad in the good, but you can always find some good in the bad.” Most recently, for the event craft that he helped to create, the way he wanted to tweak is was by asking kids to list “3 bad things about being in the hospital, and 3 good things about being in the hospital.” He really does work so hard to find the good, even though sometimes I know it must be so difficult.
OK – I don’t have it in me to just write a little. It’s late and I’m officially fried. This post is done and so, officially, Interim Maintenance is behind me — one more tough phase checked off. I’m saying goodnight, and tomorrow we will head to CHOC for Day 1 of Delayed Intensification.