Today, Oct 28th, is the 5 year cancerversary of Ethan’s Leukemia diagnosis. I hate that word (cancerversary), I hate being someone who has to use it, I hate that the end of October and Oct 28th in particular will forever trigger memories of the day our world was turned upside down. We are forever affected and will never be the same, and it’s unknown what the long-term health impacts on Ethan will be. But Ethan is 12 1/2 and enjoying school, friends, golf, his role in ECBC — he’s thriving — and the gratitude that cancer has gifted us, I Imagine that will forever be with us as well in a way that we never imagined.
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!
Three days ago, on the evening of Saturday 2/24/18, Ethan took his last dose of oral chemo. Then on Monday, Ethan had surgery to remove his port (which is a small plastic tube that is inserted into a large vein in his chest), which had been in him for the duration of his treatment (and was the reason for numerous limitations during treatment such as not flying, swimming in the ocean or public pools, or going on trampolines). On Sunday, we celebrated Ethan’s end of treatment by surprising him with shopping for a surfboard, ice skating (his request), dinner at Koki’s, and a trip to Archie’s for ice cream right before bed (which he hadn’t been able to do during treatment due to rules about eating and the timing of chemo). Thank you to all the friends and family who called or texted over the weekend — your thoughtful words meant so much. And a HUGE thank you to everyone who supported us up until the end of this long road, when it was not so apparent on the outside that we were still going through a lot…but we were at the end of a marathon, we were tired, and your support was more significant than you could know.
So many emotions are wrapped up in being “done”. Ethan was in treatment for three years and four months. One thousand two-hundred and thirteen days. There’s so much to write. There has been so much to write since my last significant post over two years ago, after the first year of treatment and at the beginning of maintenance therapy. But conveying the emotions always felt too complicated, too tiring to try to communicate coherently. It still feels that way, and at some point I may try to share some details from the last 2.5 years of Ethan’s battle that I never shared. What I can say very simply now is that on diagnosis day — October 28, 2014 — this day, the days after Ethan would finish treatment, felt SO VERY FAR away. I remember thinking “3.5 years, that’s a big chunk of his childhood.” And now we are here, officially done. So many emotions are packed into the concept of being “done”. Steve and I are both happy, excited, optimistic and hopeful, grateful, and so very proud. But part of being a “cancer mom” (a “club” I can’t imagine you ever leave) is a relentless and forever commitment to raising awareness about pediatric cancer — that more research is needed, that survival isn’t good enough, that the most pervasive treatment methods are toxic and cause serious long-term medical problems (including heart disease and secondary cancers among many others). I also want my community to know that being “done” unfortunately isn’t so simple as it appears. With permission from Steve, I am sharing his reaction as Ethan swallowed his last oral chemo. Which I think shows much better than my words how intense and complicated our emotions are as we move forward. Wrapped up in taking his last chemo was all the above positive emotions, but also so much pain, exhaustion, and fear that we have carried for so long and that we still carry as we move forward into a new post-treatment phase — of no longer being on the life-saving chemo, regularly monitoring his blood, regular oncology clinic visits, and managing long-term chemo toxicity. We hope that over time Ethan will do well and the weight of fear and uncertainty and vulnerability will lighten…because it’s a heavy burden to carry for what feels like will be for many years. We’re so happy and we’re optimistic, but there’s a lot more underneath, and I want my family and friends to understand that.
Since I haven’t written a blog post since November 2014, some of you (especially those who aren’t local) may not know about the nonprofit project that Ethan and I founded in December 2015. During treatment at CHOC Children’s Hospital in Orange County, Ethan noticed that there were very few children’s books on the floors for patients, and that he never saw patients reading or being read to. So, after we made it through the hard first year, we partnered with The MaxLove Project and founded Ethan & Choco’s Book Club (ECBC), with the mission to bring books, reading aloud, and a lending library to CHOC. Currently, we are giving away books at monthly hospital parties, special events, in special book boxes called “Read+Think+Thrive Boxes”, at CHOC’s Outpatient Infusion Center, and to MaxLove Project’s new office and survivorship center. In May, we are starting the first phase of our inpatient program, which includes bedside reading in patient rooms by trained volunteers as well as a mobile gifting library cart to gift books to patients who are in isolation and can’t be read to by a volunteer. Ethan has had a super involved role in many aspects of this project — from doing 366 daily online book reviews that resulted in 2000+ new books being donated during our first year, to holding his own book drives, to talking at schools and among youth groups, and much more. An avid reader himself, he says that he can’t imagine going through Leukemia treatment without books (they allowed him to escape the hospital room, they kept him thinking about new stories and new ideas when he wasn’t in school), and he’s so proud to be creating a nonprofit that will fill an important void at CHOC. He actually says that ECBC is “one of the positive things to come out of Leukemia”. I agree with him, and I’m grateful that we found a way that together we can make cancer give. And that it’s something we are both so very passionate about (I get to draw from my expertise in early literacy!). To learn more about ECBC, check out our website at www.ethanandchocosbookclub.com. To follow us on social media, check us out here: https://www.facebook.com/ethanandchocosbookclub/
On Memorial Day of this year (May 28, 2018), we are holding our first big community fundraiser. It’s a charity run, called ‘BOOK IT: Racing for Reading for Hospitalized Kids”. In honor of Ethan’s finishing treatment, please consider signing up for the fun run/race if you’re local (the race is in Costa Mesa). We would LOVE it if we had a great turnout of family and friends! The race is quick, there will be local children’s authors and a book character costume contest and a pancake breakfast — and you will be done by 9:00-10:00 and still have the rest of the holiday. If you are not local or cannot make it to the race, please consider donating the value of a new hardcover book (the hospital only takes new books) or the value of a “Read+Think+Thrive Box” — which is a specially curated book box for new cancer diagnoses at CHOC Hospital. Race registrations and donations can both be done at the race registration site: https://runsignup.com/runreadthrive. Also, click here to view an electronic race flyer — we would really appreciate it if you could share the link to this flyer on social media and help us spread the word! We hope you will help us bring books and reading to hospitalized kids in Orange County!!!
Ethan came into the hospital reading 3.5 years ago, and here he is being wheeled out of the hospital (hospital rules) after his final procedure, reading from the recovery room to the car. How awesome would it be to someday see many patients at CHOC with books in their hands, asking to be read to, wanting to borrow another book?!
I need to get this post out but I’m exhausted, falling asleep as I write…so please excuse the tired and terrible writing that this entry is…
The past couple of months since Ethan started school have generally been great. Until the last two weeks, Ethan was at school almost every day except for planned chemo days. He has been going happily, eager to learn and see his friends and be part of it all. As expected, steroid weeks have been difficult, and the extreme heat made for a handful of very tough days. His “normal” is tired and emotional, yet every day he works so hard to excel academically, keep up socially, and stay composed. In general he has been doing better than we expected. Check out some of the photos below to see some of the highlights from September and October…
And then we hit a year… This past Wednesday (October 28) marked the one year anniversary of Ethan’s diagnosis. While this date was on my mind in the couple of months prior, the events of the two weeks that preceded it very much heightened my emotions surrounding the one year date. About two weeks ago Ethan had his first couple unplanned absences due to tiredness and a bad cough, and then he had a week of what seemed like extreme tiredness and emotionality, with a few difficult days at school. A week ago Friday (Oct 23), Ethan went with Steve and Caleb on his Indian Guides campout, which was the same weekend and same location as last year’s campout that preceded his diagnosis. Like last year, I received reports that Ethan was tired and not integrating so well, and then Ethan came home Sunday morning with a fever which resulted in a required trip to the ER and hospital admit. His labs came back with extremely low blood counts (0 Absolute Neutrophil Count, 7.4 Hemoglobin, and 22 plateletts), numbers that were frighteningly similar to his diagnosis numbers. I think especially because my mind was on the one year day coming up in just a few days, the low numbers took me immediately back to that day last year and I spent about 24 hours fearful that this could be a relapse. (We had been told that when all 3 numbers drop, that is a possible sign of relapse). It took about 24 hours for us to learn that certain viruses and infections could cause the same drop — and Ethan tested positive for rhinovirus (the cold virus), so that was the culprit. When the 28th came along, Ethan had had a blood transfusion and was feeling better, but we were still in the hospital waiting for his counts to rise before he could be discharged. Ethan ended up missing all of Halloween week at school — crazy clothes day, crazy sock day, the Halloween parade, his Halloween party — also all reminiscent of the week he missed last year when the diagnosis happened. And from Sunday through Thursday, the late night shift changes with Steve, when I was driving home in the dark to the kids, brought me back to those terrifying nights last year when I drove home each night feeling like it all had to be a nightmare that was going to end soon. Together, the events of this past week leading up to 10/28 felt like a blatant reminder of Ethan’s tenuous situation, that we can’t take anything for granted, and of the long difficult battle that we are very much still fighting.
I had decided a couple of weeks back that I wanted to “celebrate” the one year mark with a family dinner and treat. But as the anniversary day approached and it was clear that we would be in the hospital, I wasn’t so sure that we all would be in a celebratory frame of mind. Then, Tuesday night 10/27 at a best friend’s birthday dinner when I had questioned aloud whether or not to celebrate, a close friend responded with “why would you celebrate? Isn’t that odd? What do you have to celebrate, you’re right in this middle this.” That question caused me to think for a second, but it led to my deciding with more resolve that yes we do need to celebrate. Reflection helped me realize that I do still feel angry that Ethan has to go through this and that we all have to live for so many years with a fear that perhaps all parents have but ours penetrates so close to the surface that it could explode at any minute. Definite anger and sadness. But I think much more powerful than those emotions are feelings of gratefulness and pride and strength.We’ve gotten this far, almost 1/3 the way through and hopefully the hardest part behind us — and we can keep on plugging along, enjoying the good days and getting through the hard ones. That’s a reason to celebrate. Whether we are in the hospital or not! So we did…with a “family dinner” in Room 549, some cake, and some sharing of positive thoughts. It made Ethan happy, it focused us all on the positive, and it felt like the right thing to do.
Ethan ended up getting discharged the afternoon of the next day (10/29), despite blood counts still in the critical range, because the oncologist decided it was better to let him recover at home. So while he missed Halloween at school, he was out in time for Halloween at home, which he wanted more than anything. He got dressed up and headed to our friend’s house with so much anticipation — but the night didn’t turn out so well for him. I think there were too many people, he was tired, he had to ride in the wagon while the other kids ran along … and he came home unable to contain his tears. He explained that he just wanted to have fun like everyone else, yet he couldn’t. He couldn’t figure out how to enjoy one of the most fun days of the year. And it bummed him out.
My guess is that Ethan’s blood counts are still low, which is intensifying his emotions. But I also think things were going so well (at school, playing tennis, seeing friends, etc), and this bump in the road (just a simple cold that put him in this hospital and caused him to miss a lot) has reminded him just how not normal his life still is. And that’s a hard reality that he has to face for a long time.
To close, yesterday (10/31) also marked the anniversary of the start of Ethan’s treatment, and we are now on Day 2 of Year 2 of treatment. He has not had any chemo since last Sunday when he was admitted to the hospital, because chemo is held until blood counts go above critical levels. We return to the hospital for bloodwork tomorrow, and hopefully his counts will go up enough to return to school and resume his daily chemo. We start off this year with the events and emotions of the past week reminding us that the upcoming year will also be full of many ups and some downs. The road is unpredictable. Day by day, we’ll get through them all.
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.
I’m too tired to write, especially since I just did a long blog post a couple of days ago. I do want to briefly share that Ethan started Long-Term Maintenance (LTM) today! We went into the clinic for labs early this morning and heard back quickly that his blood count (Absolute Neutrophil Count — ANC) went up considerably since last week and was high enough to start. After dropping Caleb off at day camp, we headed back to the Outpatient Infusion Center at the hospital, where Ethan received LTM day 1 chemo — which included a spinal tap with intrathecal chemo and Vincristine through his port. I had promised him a celebratory trip to Archie’s (local ice cream store) afterwards, but he was too sleepy and achy to go, so we decided to postpone that until the next day. I have various thoughts to share and I want to give some info on what LTM is, but I’m going to hold off on sharing for another post.
Today felt like a big day, having officially crossed the line from frontline treatment to Long-Term Maintenance!
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…
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.
It’s Tuesday morning (4/13), and Ethan just completed his 3rd (of 4) round of Interim Maintenance (I/M) in-patient chemo treatment and recovery. He was supposed to admit to the hospital two weeks ago on Thur 3/27, but he didn’t make blood counts so we went back to check numbers again on Monday (3/30). On Monday he didn’t make counts either, and he was asked to return Thursday to check again to hopefully admit that Friday. That would mean that he’d definitely be inpatient for our family Passover seder in Moorpark, which he really wanted to be at! We ended up convincing the docs to let us check his bloodwork the following morning and admit him the same day if he made numbers. Which he did! Tues Morning (3/31) he went in early, his numbers jumped up and made the cut-off, and he was able to start! We knew that if the Methotrexate cleared his system as quickly as it had the prior two rounds, then he’d be out in time to possibly make our holiday celebration.
The hospital stay went smoothly. After Ethan was admitted Tuesday am, he had to remain NPO all morning until his 1:00 PM procedure. He had a spinal tap to receive his intrathecal chemo (chemo that goes to his central nervous system). We found out soon after that no Leukemia cells were found in the cerebral spinal fluid, which is checked throughout treatment for possible CNS relapse (which will hopefully never be an issue!). After 6 hours of pre-hydration, Ethan received the Vincristine infusion and then the 24-hour high-dose Methotrexate infusion. As in prior rounds, Ethan subsequently received infusions of meds (Leucovorin rescue) that helped to flush out the Methotrexate, which he received around-the-clock until the Methotrexate cleared and he could go home. Ethan’s 72-hour bloodwork came back below the number we needed, so he was discharged Friday night (April 3). It was late (around 10:30 PM), but he (and all of us) were happy he made it out in time to join our family for Passover the next day. We were so glad we pushed for that to be possible!
This hospital stay was similar to the others — Ethan didn’t get good nights sleep (again, due to more problems getting the meds in a timely manner and in liquid form and the all-night peeing). By day 2, his mouth started to bother him and he had a difficult time swallowing, and not much eating happened at all. But all in all his time in the hospital was pretty easy and thankfully had a quick turn around. Ethan’s recovery at home was also relatively easy. He had mild mucositis but it seemed less bothersome to him than the weeks prior. Though his appetite was still quite terrible. The one thing that was worse than in the past is he started with nausea; if we weren’t on top of the Zofran (anti-nausea med), then he vomited. The Zofran helps a lot so we need to give it to him regularly right now. On the positive side, Ethan’s liver enzymes did not reach terribly high numbers like in the past, so there was no need to take him off his oral chemo — which was a welcomed relief to me. Last Wednesday (4/8), his hemoglobin was borderline too low, but then it started to rise again and he avoided needing a transfusion. The nausea/vomiting didn’t go away, but other than that he felt good, had lots of energy, and was in a good mood.
Today (Tuesday 4/14), Ethan is admitting to the hospital for his 4th (and final) round of in-patient high-dose methotrexate. We’re looking forward to getting past this phase of his treatment!
Some recent highlights. Without doubt, the most significant highlights of the last couple of weeks are that Ethan ended up being able to make two celebrations that were important to him–our family Passover seder with aunts/uncles/cousins in Moorpark and a last-minute birthday celebration (because we knew he’d be inpatient for his actual birthday this Thursday). His short hospital stay and relatively good response to chemo this round were such blessings, as he was so thrilled that both of these ended up working out. Here are some specifics:
- While at the hospital, Ethan especially enjoyed a great school session with Mrs. Lukkes, the generous book on the human body from Grandma Telson, measuring the perimeter of the hospital floor to determine how far he is walking when he does his loops, and attending the fun Easter celebration with Maddy and Caleb.
- We were so grateful that we all made it to Passover. Ethan got out of the hospital just in time, no one in the extended family was sick, and despite being tired, he felt good enough to go! It was so great to see Ethan celebrating with everyone.
- Ethan enjoyed spending time with friends who visited — he especially enjoying playing with the Kneller boys as well as his buddy Aidan’s visit.
- Steve took off work and we had a great family day at Balboa Island. We took the ferry, had lunch on the pier, played in the sand, indulged in some ice cream, and Ethan even jumped on the bungee trampoline! Ethan rode the scooter the whole time (I don’t think he would have tolerated all the walking). That was Ethan’s first “real” excursion since October; it was a long day for him but he did great.
- Ethan had a very special birthday celebration. A few of his closest buddies from school came – a huge thanks to them for making it work even though they were asked so last minute and had other plans. Cousins Max and Sam, big cousin Jamie, and the kids’ old nanny were all there too so Ethan was surrounded by some of his very favorite people. The highlight for Ethan was that his guitar teacher Luke also came; Ethan was thrilled that he played/sang for him! He felt so good throughout the evening — it was wonderful to see him so happy.
- Last weekend Ethan enjoyed a lot of bonding time with Max and Sam — and really nothing could be beat that. They slept over after his party Friday night, hung out Saturday morning, went to the driving range, and celebrated Sami’s birthday together on Sunday with the family. Time with his cousins always puts the biggest smile on his face.
- Ethan was beyond thrilled to get an electric razor from Nana and Papa. Some of his friends started getting electric razors a couple of years ago and I told him not until he’s 12. (I don’t understand why kids need fancy things younger and younger these days!) That’s what he really wanted, so my mind changed amongst all that’s going on.
OK heading to the 5th floor — let’s get this last round of Interim Maintenance done!
(I’m more tired than usual so I apologize for the quality of this writing!!)