The Start of Interim Maintenance

arroyo spirit day, feb27 2015

Participating in his school’s spirit day from the hospital

The last couple of weeks have been relatively good, with a few small bumps and some great news! About two weeks ago, Ethan finally started the next phase of treatment, called Interim Maintenance (I/M). I/M is the third phase of frontline treatment, with frontline treatment being the period of systemic and intensive chemotherapy prior to several years of Maintenance (less intense treatment). I/M is supposed to be a 63 day phase, though like the prior phases, it can be days to weeks longer due to delays that can arise if Ethan doesn’t make blood counts for the start of each round of chemo. During I/M, Ethan will be admitted to the hospital four times to receive multiple types of chemo including High-Dose Methotrexate, which is infused over 24 hours and requires subsequent drugs to help flush it out of him (it can be very toxic to the kidneys and liver). He won’t be discharged until the Methotrexate levels in his blood are below a certain number, which we were told is likely to require 4-8 day hospital stays, depending on how he responds. During this phase, he also receives two spinal taps, the first of which includes a bone marrow biopsy to check for residual disease. I’ve been nervous about starting I/M — he’ll be getting a high-dose chemo that could have serious side effects, he’ll be getting more Vincristine (the chemo that has caused considerable peripheral neuropathy), and I’m worried about the  toll on Ethan and on the family of every two week hospital stays (especially if his stays are on the longer end of the range). The shorter the stay, the longer the time in between — so I’m praying that each stay is on the shorter side.

ethan admitting into choc this week, 022415

Ethan in a good mood as we are admitting for Round 1 of Interim Maintenance

ethan leaving hospital after first im dose, 022715

Happy to be leaving the hospital!

Ethan was admitted for his first I/M phase hospital stay two weeks ago Tuesday (2/24).  His liver was 10x normal (likely from the Erwinia in the prior phase), but they said that we could still proceed while also keeping a close eye on his liver. Heading to the hospital that day was a huge contrast compared with all of his other hospital stays, all of which have been emergencies and mostly in the middle of the night. He had a great attitude, was all smiles and full of jokes, and he was impressed with his room (large, had a “view”).  In the late morning he had the spinal tap and bone marrow biopsy, and he woke easily from general anesthesia. Several hours after the procedure, the 24-hour high-dose methotrexate drip was started. It didn’t cause him much trouble, except the continuous drip, as well as the drip to flush it out of his system, had him needing to pee all night for the duration of the hospital stay — so not much sleep was had. He had some mild side effects, including soreness (from the biopsy) and headaches (from the spinal taps), and he started with a few mouth sores by Thursday (side effect of the Methotrexate). Blood levels were monitored regularly, and by Friday evening the Methotrexate levels were low enough for him to be discharged. So I/M dose #1 was a 4 four day hospital stay — about as good as we were told we could expect.

The biopsy results were MRD 0! On Friday (2/27) while we were still in the hospital, we received the results from Tuesday’s bone marrow biopsy. We learned that Ethan is officially minimal residual disease (MRD) 0, meaning he has no visible signs of Leukemia cells. The only other biopsy that Ethan has had thus far was right after Induction at Day 29 of his treatment, where we learned that he was still MRD positive and thus put in the “High Risk” treatment group. While were were told that we should expect him to be MRD 0 at this point in his treatment, the good news was still a great relief that Ethan is on the right track.

Recovery and a break from chemo. After leaving the hospital on Friday 2/27, Ethan had about six days at home where he was in quite a bit of discomfort. He was tired, emotional, and had some nausea. Most bothersome for him was that he had a mild to moderate case of mucositis, which is a painful inflammation and ulceration of the lining of the digestive tract, including the mouth and throat. It is one of the more common side effects of high-dose methotrexate, so we know to expect that it might happen with each dose. Ethan had a difficult time swallowing and even laughing caused tears, and not much eating happened at all until it started to clear. A blood draw on Tuesday March 3 came back with very elevated liver enzymes, so we were told to hold his daily oral chemo to give the liver enzymes a chance to go back down so that he can hopefully start his next round of in-patient chemo the following Tuesday. I don’t like the idea of holding chemo, but apparently that’s what needed to happen so that his body can recover and we can proceed.

Enjoying sibling time in the pool

By Thursday of last week (March 5), the side effects were almost completely gone and Ethan was feeling a ton better. Being off the oral chemo also meant that he wasn’t experiencing any side effects from that and that his immune system wasn’t being suppressed, so his blood counts went up into a safe range. He felt good and had a chance to get out and do more for a handful of days, which he really enjoyed — the silver lining in having to hold chemo. This past Monday (March 9), he went in for bloodwork, hopeful that his numbers would allow him to be admitted Tuesday, when he was due for his next IM dose. His liver enzymes still weren’t normal but they were low enough to proceed; however, his platelett count didn’t make the cutoff so the Tuesday admit was delayed.  We went back this morning (Thursday) to check blood counts again, and we just found out that he’s good to go — so we are now in the process of getting admitted for Round 2 of Interim Maintenance.

Highlights from the Last Couple of Weeks. Of course, an MRD of zero was the most significant highlight, as was a week or so of some level of “normalcy” that the break from chemo and side effects afforded. (I think I will always put that word “normal” in quotes now”.) Here a are few things that stood out for us:

  • While in the hospital, Ethan visited a couple of his favorite places: (1) the CHOC radio station (Seacrest Studios), where he enjoyed dancing, singing, and talking up a storm with the Chapman University student volunteers and  (2) the CHOC movie theatre, which shows new releases and offers popcorn!
    winning choc radio bingo

    Happily calling the hospital radio station after winning Bingo

    FullSizeRender

    Ethan loving his visit at the CHOC radio station!

  • Ethan really enjoyed his excursions with Papa, including a trip to the theatre to see a matinee (his first movie since diagnosed), several trips to the driving range and meals at the golf club, the Tustin Brewery, and Archie’s Ice Cream. He also was thrilled to go to Color Me Mine and CPK with Nana.
  • bowling with quinn, feb2015

    Bowling with buddy Quinn

    Social time is always a treat these days — whether it be in -person or seeing his class or cousins via FaceTime. Recently, he’s enjoyed visits from friends SuperMax and Colton, special time with our old nanny Neri, lunch and bowling with buddy Quinn, attending part of his buddy Aidan’s birthday party (his first birthday since diagnosis and only possible because he had higher counts for a few days), and going to the Neary’s and deMaria’s for dinner. We’ve discovered that going to friends’ houses (rather than just having people visit us at our home) is a welcomed “excursion” for Ethan — another way to get him out. Home definitely gets old for him!

    ethan and colton, feb21 2015c

    Feeling well enough to play basketball with buddy Colton

03072015, ethan variety show

Ethan happy to be with his variety show group.

 

  • One of the best highlights was getting to go to his school variety show — which we did not think would be possible. He has performed with the same group of boys for the last few years, and this year the group included him by giving him four solo lines that were video recorded and shown on large screens at the show. Since his white blood cell count was up and the church had a separate enclosed moms room, Ethan was able to watch the show. He loved seeing all his buddies, being part of group photos, watching his sibling acts, and feeling part of it all.
  • As usual, Ethan is loving his coding lessons. Check out his recent blog post about his Scary Maze game!
  • Ethan has been golfing with his papa for a few years (mostly just the driving range). A couple days ago he had his first golf lesson. He was especially happy that the instructor took him on the course for the lesson. Watching him was a highlight for my dad and me as well!

    Mar10 2015, golf lesson

    Ethan’s first official golf lesson

  • A couple weeks ago, a nurse asked Ethan about his weekend plans. He shared that he’s seeing his cousins, after which the nurse asked “Do you see your cousins a lot?” Ethan responded, “I used to not see them that much. Since I got Leukemia, I see them like almost every week. That’s one of the good things about having Leukemia.” This morning when we were driving to the hospital for our next hospital stay, he said, “The bad thing about making counts is then I’ll have to stay in the hospital for a while, but the good thing about that is it means I’d be getting closer to getting done with the hard part. I’ve noticed that you don’t always find bad in good, but you can always find good in bad.” I love his spontaneous philosophizing and the way he looks at things. And I’m so grateful for his relationship with his cousins.
    022615, facetime, math with jack

    Enjoying math with partner Jack. I can’t imagine this process without all of the technology!

    hot tub with cousins, feb21 2015

    Cousin time is always the best!

ethan and davin, mar1 2015

Ethan loved hanging out last week with his buddy Davin.

And now we are about to begin Round #2 of Interim Maintenance.

Posted in Interim Maintenance, Milestones | Tagged , , , | 2 Comments

A Few Extra Weeks of Consolidation…and NO Allergic Reactions!

Facetiming with class from CHOC, math with partner Oskar

Ethan Face timing with math partner Oskar

The past two weeks prior to this have been really positive from a chemotherapy perspective. Two weeks ago Tuesday (Feb 3), Ethan went into the hospital for the first of six infusions of Erwinia (an un-pegylated product with the important drug Asparaginase — which requires 6 infusions to replace a single dose of the pegylated form that he was allergic to). I was nervous, because the last two attempts of the pegylated forms resulted in quick allergic reactions — so I was worried about the possibility of this not working for him either (knowing there are no other forms for him to try) as well as what another allergic reaction could mean for him. Due to the risk of another severe reaction, Ethan was now at the hospital rather than the Outpatient Infusion Center, there was a rescue cart prepared especially for him right outside of his room, and he had a ton of attention from the doctors and nurses. Gratefully, the first day went well (despite very long). No allergic reactions, and no terrible side effects. The infusions on days 2 (Thursday) and 3 (Saturday) went similarly — I was nervous for a reaction (because apparently antibodies to the drug can develop at any point), but he had none aside from exhaustion and sleep. The second week of Erwinia infusions (last week) went well too. On Monday Ethan had lots of nausea and vomiting (the first time he’s vomited since he was diagnosed), but he made it through infusions 4, 5, and 6 on Monday, Wednesday, and Friday — thus getting all of the drug into him that is such an important part of his treatment. Steve and I were very relieved that the Erwinia worked for him. And that it appears that he can get it again when he’s due for it later in his treatment. Such good news, especially in contrast to where we were two weeks ago.

As of last Friday (Feb 13), Ethan is officially done with Consolidation phase chemo. He has two possibly more difficult phases in front of him before his treatment should likely get easier; combined these two phases are expected to take 4-6 months. He was due to start the next phase, called Interim Maintenance (IM) this week, but bloodwork on Tuesday showed that his ANC (Absolute Neutrophil Count, the part of the white blood cells that fight infection) was too low to start (it was in the low 300s, and it needs to be at least 750). That was frustrating news, as he is already two weeks delayed due to the two allergic reactions. So this week we have been on a chemo hold, and levels will be checked again tomorrow (Friday). Hopefully, Ethan’s counts hit 750 tomorrow so that he can start IM on Monday. That would make for a three week delay; I’m praying it’s no more than that.

Without chemo for a week, Ethan has felt pretty good and had lots of energy, so in that respect this delay is a positive break. Though his blood counts are still so low (in the critical range), so I think it’s especially frustrating to him that he feels good but is so limited as to where he can go and whom he can see.

A Quick Sidenote. Two plus weeks ago after Ethan had an allergic reaction to the chemo (PEG-Asparaginase) and then again to a new from of the chemo as part of a brand new study (PEG-Crisantaspase), we were told by the local principal investigator of the study that it would be too dangerous for Ethan to try option 3 (I/V Erwinia). Steve and I had done lots of research, and our reading made us wonder whether Ethan might be allergic to the PEG (a carrier molecule for the drug) rather than the drug itself that is so important for starving Leukemia cells. We asked our oncologist to consult a top Leukemia expert in LA, and that inquiry resulted in antibodies testing which revealed that Ethan in fact did not have antibodies for the asparaginase drug (the drug he needs). I’ve explained this already in an earlier post (click here), but I’m feeling the need to communicate just how important our own research and advocacy ended up being for Ethan. Without it, Ethan might not have even had the opportunity to receive this drug — which now, two weeks later, is successfully in him! A message to everyone, regardless of the health issue, to stay on top of it and stay informed, because the parent advocate is a unique role that you can’t assume anyone else will take on. Also, interestingly, Ethan’s case resulted in the national study being halted so that his blood could be analyzed by the pharmaceutical company and the experts, and upon further analysis, the study has been closed and the 2nd drug that Ethan reacted to is no longer available to anyone in the country. The reactions and delays were definitely unfortunate and scary for us, and I wish we didn’t go down that path — but we’re glad that at least something useful seems to be coming out of it –perhaps the need for more proactive antibodies testing or the development of a reliable test for PEG antibodies. Or maybe a new product altogether. Regardless of what comes of it, again this is a reminder that as parents we need to be active participants throughout this journey — stay informed and be vocal and collaborate with the docs — not just view our role as responding to decisions and receivers of care.

Also in the last couple of weeks… We’ve now learned that getting through this journey for Ethan is as much, perhaps more, about getting through and managing all the side effects of all the toxic drugs he is receiving. Tiredness, nausea, jaw pain, neuropathy, allergic reactions, emotionality, sleep disruptions, neutropenia — the list is long and always changing. Over the last couple of weeks, Ethan’s appetite has been especially poor. Even when he’s hungry and picks the food he wants, when he actually sits down, it is often difficult to get him to eat more than a couple of bites. He has now lost about 5 pounds, and he looks so thin. We are trying to pack in high quality/high protein foods, and we’re also going to start him on an appetite stimulant to see if that helps. I know this is normal for chemo, but it’s still hard to see his body changing and being affected by it all. And especially knowing that he has so much hard stuff yet to come.

Another new thing to emerge is night terrors — something that we’ve never seen among any of the kids. Every night a few hours after he falls asleep, he cries out — very worked up, inconsolable, so distressed. My understanding of night terrors has been to leave kids alone during them, but he gets increasingly worked up and seems to respond better when I intervene. Ethan doesn’t remember them at all in the morning, but he says he thinks it’s related to him feeling alone and scared in his room by himself. I learned quickly that if he is in my bed they don’t happen — so now every night after a handful of them, he ends up in our bed. This is literally the first time in all three of our kids’ lives that we’ve had a child sleep in our bed; we’ve always been so protective of our space (until 7am!). Now, I just want to comfort him, and I’ll worry about breaking the habit later. Apparently, this is likely related to a combination of anxiety and possibly the meds. We’re working on a referral to a neurologist at the hospital who specializes in sleep difficulties.

Last week we went to Children’s L.A. to meet with Dr. Gaynon, a top expert in childhood Leukemia whom we had wanted to meet since Ethan was diagnosed. We really like our local oncologist — but the history that Dr. Gaynon has, with both patients and the research, just gives him a whole different level of authority. He confirmed Ethan’s treatment plan and that Ethan is in good hands, and he told us to contact him with any questions or concerns that arise, so we left feeling good about having him as needed in the future.

Another issue to come up in the last couple of weeks pertained to Ethan’s home schooling. It caused some stress for me but I think it’s resolved now. Ethan’s home school teacher is his 2nd grade classroom teacher, whom we adore and feel so fortunate to have. She has thus far come to the hospital a handful of times when Ethan has been there inpatient — she has typically come when he has already been there for a few days and texts to ask if Ethan is up for doing some work. His response to her (unlike his response to me) is always yes. A couple of weeks ago, as his teacher was on her way to visit Ethan at the hospital after he had been there for 3 days without any schooling, she was told by the district nurse that she cannot provide his instruction at the hospital because the hospital is in a different district than the one that provides his home schooling (though the hospital is only 1-2 offramps away). This made me nervous. If she’s willing to come some, and if that’s what is best for Ethan, how could that not be allowed??!!

I did some research and learned that the California Department of Education DOES NOT restrict her from providing instruction in a different district. The code only says that the district where Ethan resides over the long term is responsible for providing his schooling, with no specifications about where that needs to happen. Tustin Unified is responsible for his schooling — he resides at home over the long term and is a TUSD resident, taxpayer, and student with only short stays at the hospital. In my research, I also learned that the district can come up with its own more narrow policies, including restricting where the instruction may or may not happen. But knowing that instruction in the hospital should be possible according to state code, I shceduled a meeting with the district nurse and program administrator, and went in somewhat defensive and ready to fight this one if needed.

At the start of the meeting, we were told that when Ethan is at the hospital, he is expected to get instruction from the hospital teacher rather than his home schooling teacher. I expressed that is not a good option in my mind. We had tried it twice — she handed Ethan a few worksheets — unconnected to Ethan’s classroom or the specific curriculum or Ethan’s capabailities. Certainly not what will challenge or engage him. I would MUCH prefer occasional visits by his teacher than frequent hospital visits by the hospital teacher, as it is no question that his teacher is best able to provide instruction that is connected to Common Core, his actual classroom curriulucum, and his needs. Better than anyone, she can provide continuity from day to day, knows his thinking and can challenge him, and keeps him engaged even when he’s at the hospital. I also shared the example from the week prior when Ethan was at the hospital and did not want to do any schoolwork for me, yet when he heard that his teacher was coming, he was eager to do his work to prepare and then insisted on waiting for her in the lobby of the hospital. And then he worked hard for a good hour. There is no replacement for that, and I shared that I was not willing to let that go. It didn’t take long for them to acknowledge that the code is in fact written for long-term stays at home or hopsital, not going back and forth, and that they’re fine with the teacher going to the hospital if she’s ok with it and if it’s only a moderate amount. It felt good to settle that issue before we start a series of months with many anticipated overnight hospital stays.

maddy reading aloud to brothers2, feb2015

Maddy reading to brothers — So grateful that reading aloud is still our most treasured family bonding time.

The tone of that meeting with the district was actually much more supportive than I had expected — it felt like they were genuinely concerned about the best interests of both his teacher and Ethan. It was good to have a conversation, which was more general than just about the hospital issue, and to know that there is support there if other issues come up. That being said, this was another example of the importance of research and advocating, without which different decisions very well could have been made that might not have given Ethan what’s best for him. I can’t resist sharing this one more thought: At the meeting, one of the comments to me was that “Ethan’s health comes first”, said in the context that I shouldn’t worry about the academics. It was said with the best of intentions, but this is my problem with it. Ethan’s going to come out of this, and he’s going to return to his school with his peers. I’m not concerned about him getting the breadth of the curriculum, but I am concerned about keeping him engaged and loving learning and continuiung to grow cognitively. I can’t imagine what his life would look like right now if school (formally, with is teacher) and some learning time with me (through things like reading aloud and science and fun writing and good conversations) weren’t a part of it. This is too long of a journey to say “I’ll focus on the illness and worry about the education part later”. Ethan knows that school and learning is part of becoming a healthy individual — when he feels up to it, it’s something that he wants and expects, and throughout this journey I’ll do what I can to ensure that good learning is always part of his life.

Some Recent Highlights…

  • We finally got FaceTime going in these last couple weeks with his class at school. Four times now — Ethan has gotten to work “with” his math partners as well as his reading partners, share his work with the class, call on other kids to ask questions about his writing, and listen to a class read aloud. He’s even done a couple sessions from his bed in the hospital while receiving chemo! Things have gotten isolating lately with so much treatment, so that he can do this is so wonderful. He has a smile on his face the whole time.

    Ethan facetiming with class for first time, quinn

    Face Timing for the first time with his class, here with his great buddy Quinn. Look at Ethan’s expression. So thankful for technology!

  • The weekend before last, Ethan’s counts were good enough for him to watch his basketball team play in the district finals. He was so excited to go that he had his basketball uniform on from the moment he woke up at 7am. He ended up getting to practice with the team before the game and made some shots so he felt good. He even walked away with an unexpected trophy (and a huge smile).

    Ethan got a trophy too, feb2015

    Ethan, after being surprised with a trophy along with the rest of his basketball team

  • Ethan (and the rest of the family) enjoyed swimming in our new pool for the first time last weekend. I’m feeling especially grateful for our new backyard and pool now that we’ll be depending on it so much in the coming months and years (Ethan’s not allowed to swim in public pools until his port is out in 3 years!)

    jumping into new pool for first ime

    Christening our new pool with a combined jump-in

  • Ethan’ still enjoying some of the “regulars” that we work hard to include in his life, including golfing with Papa; Mad Science lessons; guitar lessons; U-code sessions; cousin time with Max, Sami, and Jamie; and friend time (most recently, with Quinn and Colin). The social time has gotten more difficult, so when he does spend time with cousins and friends, it really is a great highlight for him.
    papa and ethan, TRGC, feb2015

    Ethan and Papa and their favorite and most safe lunch spot — Tustin Ranch Golf Club.

    Ethan building a rocket with his Mad Science instructor

    Ethan building a rocket with his Mad Science instructor

  • Thank you Zack Adzich for your science package! Zack, a buddy from school, raised money for the materials to do experiments with different kinds of sodas and antacids, and asked Ethan to blog about the results. Ethan is very excited to do this, thank you Zack!
  • Ethan is LOVING all the hits and followers on his science blog. Click here to check it out if you haven’t!
  • This is a highlight for me… Last week I so enjoyed watching Maddy play her first set of tennis. (She just started USTA Team Tennis). I don’t know if it’s because the tennis took me to a time of my childhood that was normal and safe and familiar (and so completely away from cancer), or if I was just proud to watch my daughter play her first set — but for two hours I was completely absorbed in coaching the girls through the set, and it was such a joy.
  • Another highlight for me… I’m constantly amazed by Ethan’s attitude and “let’s just do this” approach. He’s such a trooper, just doing what he has to do, day after day, never complaining or feeling sorry for himself. More early hospital visits and poking and chemo and watching his sibs going on with all their stuff. He’s just doing it, with so much grace and strength, which is a great inspiration to me. He just finished reading Lemony Snicket’s A Series of Unfortunate Events, and at the end the narrator makes a comment about how people have to deal with unfortunate situations, even if they don’t understand why. Ethan responded: “This reminds me of my stupid Leukemia. I don’t know why I got it, but now I have to just deal with it.” Remarkably, he self-corrected himself and took out the word “stupid”, saying I shouldn’t call it stupid because there is some good things about this.” I haven’t gotten to the bottom of what he considers those good things to be.I’m praying that Ethan can take the same attitude and strength into the next difficult phases of his treatment.
    mad science, the science of magic

    Mad Science — the science of magic!

    ms duff and magnolia visit, feb20152

    During chemo last week, Ethan enjoyed another visit from his kindergarten teacher Ms. Duff and her therapy dog Magnolia.

Posted in allergic reactions, Consolidation, education/home schooling | 3 Comments

Two Hard Weeks (Weeks 7 and 8 of Consolidation)

Jan2015, EKG9

No way will the EKG get in the way of Minecraft!

Allergic reaction #1It has been an unusually difficult couple of weeks for us. I’m not sure whether I have the energy to write it all out, but I’m going to try to summarize the significant information. The Tuesday before last, Ethan had a severe allergic reaction to Pegaspargase (Peg-Asp), a drug that is a very important part of his treatment protocol. Within two minutes, Ethan started to cough, his face and ears got hot, his back and face became super red, and his lips puffed up. The infusion was immediately aborted, and Ethan was given Benadryl and two doses of Hydrocortisone.  We were told that Peg-Asp would be pulled from the rest of his protocol — a scary outcome because Peg-Asp helps to starve Leukemia cells and is crucial for the improved survival rates. A bit later, we were informed that there are a couple alternative products that also contain the important enzyme (Asparaginase), and that once he recovers from this reaction, we could try one of them.

After Ethan’s first reaction, he said to me: “Mom, Leukemia is so bad. So does that mean then that God isn’t part of causing my Leukemia? Beacuse God is good not bad, right Mom? Is my Leukemia no one’s fault?”  Such hard questions to hear from him, and impossible to answer.

Decisions about treatment are so hard. A bit later, we were presented with options for alternative Asparaginase products. The second-line product that is used for kids allergic to Peg-Asp in the U.S. and in Europe is called Erwinase, which needs to be given in 6 doses over two weeks, either intravenously or intra-muscularly. That was one option. Another option is something called Peg-Crysantaspase (Peg-C). It is only offered through a VERY NEW study, and we were told by the oncologists that this is the way to go because it is a better drug than the Erwinase because it is pegylated (requires only 1 administration each time he’s due for it, just like the Peg-Asp that he was allergic to). We learned that thus far only 4 kids nationwide had been enrolled in the study, 1 who didn’t maintain adequate levels of the drug for it to be effective, 1 who had an anaphylactic reaction, and 2 who had success with it. 4 kids. Ever. The nurse in charge of the study at CHOC said she didn’t know if she’d enroll her own kids, whereas the doctors said they would (but they are also principal investigators on the study, so I didn’t know what to make of their obvious bias). I researched the heck out of it and we finally decided to try it, figuring that if it worked for Ethan, it’d make his treatment easier down the line since it requires only 1 day to administer. I never felt good about the decision though, it felt too new and too scary. An n of 4, with 2 of them being successful…it didn’t feel quite right, but I went with it anyway –trying to trust the doctors and the science. The idea that we have to make a decision about something so consequential that not even the experts really know — it’s too overwhelming.

Going with “The Study” and allergic reaction #2. Ethan had two days of preliminary bloodwork and an EKG, after which he qualified for the study. We signed consents — Ethan at 7 had to read and sign too, and this past Tuesday we went to the Outpatient Infusion Center to try again. After another EKG and another brief chemo infusion, Ethan was started on the Peg-C. A bit into it, he started with a few signs of reaction so they paused it. When they started again, they did so at half rate. About halfway through, Ethan had a repeat of the initial reaction from the prior week, and they stopped the infusion for good. Again he received Benadryl and a double dose of Hydrocortisone, and he spent the day recovering (pretty upset and not himself). Our oncologist came in with a disappointed look (not an expression you want to see on your doctor’s face). Another oncologist on the team, who’s the principal investigator of the study, said Ethan can’t get any more asparaginase throughout his treatment — that it would be far too dangerous. Our primary oncologist described this as a major setback but said that we can still have a good outcome, though this makes success with the other chemos more crucial. I was kicking myself in the butt for choosing to do the study rather than the path that most kids with hypersensitivity to the frontline drug have taken. For not going with my gut that doing the study was too new and too unknown to be “trying” on my kid. I spent the next few days researching what it means to not get the remaining doses of this drug. This felt like a scary place to be.

A bit of good news. On Friday night, bloodwork came back that showed that Ethan does not have asparaginase antibodies (he doesn’t have antibodies for the drug that we need to get into his body). So, the assumption is that his hypersensitivity was probably to the pegylated form of the product (both products that he reacted to were pegylated). Because of this, the docs now believe it’s safe for us to proceed with trying the Erwinase (the 2nd-line product that I was wishing we had done instead of the study). If it works, that’s good news, he’ll get the drug — and he can get this form the subsequent times he’s due for it. One dose of this requires 6 infusions 48 hours apart, and they will do it in the hospital rather than the OPI under very close observation. We go on Tuesday (2/3) for the first infusion, and if there are no reactions, he’ll return Thursday, Saturday, Monday, Wednesday, and Friday. We’re very hopeful that this will work. This phase of treatment (Consolidation) is extended for another two weeks as we give this 3rd and final alternative a try.

Insisting that he doesn't need the required CHOC departure volunteer

Ethan proving that he really doesn’t need the mandatory hospital departure volunteer!

 Also in the last two weeks… Everything around Ethan’s reactions to this drug and what to do has consumed most of the past two weeks — between actual time in the hospital  and time spent researching, emailing, belaboring decisions, and worrying. In addition, Ethan just finished a four-day hospital stay. He went to the ER at 1 am this past Tuesday night after we discovered he had a 103+ fever (the evening of the first allergic reaction). He finally got to a room at 4:30 am (it’s always so hard to get to a room quickly!). They started him on antibiotics and the fever went away quickly, but his neutrophil count was as low is it gets (0), so it wasn’t safe for him to leave until they started to go back up. Which took a few days. On top of that, during the past two weeks Ethan had two blood transfusions and one platelet infusion due to critically low blood numbers. It has felt like a lot for sure! 

This Week’s Highlights… I know it’s for weeks like these that this “highlights” section is especially helpful (in particular, as an exercise for me!). So here I go, trying to find some of the good moments…

  • Ethan had his first physical therapy and occupational therapy sessions last week and actually really enjoyed them. He liked challenging himself at PT, and enjoyed the games at OT. I think something different in his routine felt good.

    arm wrestling with OT therapist

    Arm wrestling with the occupational therapist.

  • Players entering the 2015 NFL draft visited CHOC this week. Ethan went down the line introducing himself to every one and had questions for them all. He thought it was so cool to get their signatures and is looking forward to “seeing which of them turns out to be famous”.

    NFL draft players

    Ethan got such a kick out of meeting all the football players!

  • Steve got quality time with Caleb at the Indian Guides Big Bear trip this weekend, and I stole away from the hospital with Maddy to go out to dinner while my mom stayed with Ethan. It’s been hard to carve out quality time with Maddy and Caleb, but it’s so important to make that happen. Maddy shared so many frustrations, fears, and questions. It was good to talk through some of these, and it was also a reminder just how much this all affects her and her brother as well.
  • Some of his favorite visitors these two weeks included Susie from Mad Science (check out Ethan’s recent Science Blog post), Luke his guitar teacher, Cousin Jamie who babysat while Steve and I actually made it out, Super Max and Audra at OPI, cousin Max, and his teacher Mrs. Lukkes while at the hospital. Together these visits provided music, science fun, learning, laughter, and love.

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    Mad Science with Ms. Susie was so cool!

  • Thank goodness for FaceTime/Skype. They enable his coding lessons, connected him with his siblings when he was missing them (not even siblings are allowed to visit the hospital right now), put a smile on his face when cousins Max and Sam Facetimed him in the hospital, and allowed him to watch his car race in the Indy500.   It’s amazing how much technology has helped to connect him with the world at a time that is so isolating. Ethan is really looking forward to FaceTiming with his teacher and class at school this coming week. With his low counts he hasn’t been able to see his friends, and he’s missing them.
  • We couldn’t go to a Super Bowl party this year, but today we had a day of family time that hadn’t happened in a while. It was good to be home with everyone under one roof.
  • The expression on our doctor’s face when she informed me of the good news regarding the antibodies. Hopefully that’s the start of more good news as we head into the next two weeks.

    school with mrs lukkes in the hospital

    We’re so grateful for Mrs. Lukkes’ visits to the hospital … it’s amazing how he turns on his student role for her despite how he’s feeling

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Enjoying haircuts and color at home!

Thank you friends for all the yummy meals we received the last two weeks — they are still so helpful. Thanks so much to Natalie, Tricia, and Susie for bringing Mad Science into our home, and Kara and Lisa – thank you for the much needed haircuts you gave me and Emily at my house — you rock! And of course my parents — we couldn’t get through these days without you both.

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Chatting and guitar playing with Luke

Face Time, Maddy and Ethan

Happiness while FaceTiming with Maddy

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And more happiness while Facetiming with Max and Sam.

01252015, Facetiming Indy500

Cheering on his car from home.

 

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Week 6 of Consolidation is Done

doing schoolwork at opi

Ethan taking a break from the fun media at OPI and getting in a little schoolwork

Ethan had another week of feeling pretty good, with lots of energy and generally in a great mood. Although our schedule has been intense with almost every day hospital visits, the past few weeks have been so much more bearable than the weeks prior… he has had a more positive attitude about schoolwork, positive and actually some loving sibling interactions, more normal playdates, and just getting through the day has been easier. It’s amazing how completely different this experience feels depending on how he’s feeling.

This past week Ethan had four consecutive days of chemo (ARA-C). That part was easy and didn’t seem to bother him too much. He also needed another blood transfusion because his hemoglobin was so low (7.1). Chemo has definitely affected his appetite, even for his favorite foods.

He had his evaluations for Occupational Therapy and Physical Therapy. At the OT evaluation, his intrinsic hand muscles were very week — which explains his writing difficulties. At the PT evaluation, strength tests showed that Ethan has generalized weakness in his ankles and hips. After the evals, we started to implement home exercises for both PT and OT, both twice a day, and we plan to start therapy visits once/week for each next week. It feels like a lot on top of everything else, but we want to be proactive — especially getting it in on days when he’s feeling ok.

Although Ethan has been healthy and avoided inpatient hospital stays since Christmas Eve, Maddy has had a fever since Friday evening. We have worked hard to keep them in separate rooms, and even floors, of the house; though with Ethan’s critically low counts, I will be very surprised if he doesn’t end up with a fever (which equals hospital admit). Hopefully he’ll surprise me!

Despite all the ups of the past week, a few days ago I watched Ethan as he walked into the bathroom naked, his little body and bald head. I just ached so hard for him — for all that he has already gone through and all that lies ahead, and all the toxicity that’s going and will go into his body. The last few weeks have been ok, and generally speaking I’m optimistic. At the same time, however, I can’t look at Ethan without feeling so terrible about what he’s going through and without feeling so much fear about the unknown path ahead, both immediate and long-term. I have so much hope and so much fear at the same time, and I wonder whether the fear will ever go away. As parents, we all have that on some level. But with the cancer diagnosis, it’s like this protective bubble that keeps are kids safe from real harm  has been popped and never again can it be whole.

On that note…A Few of This Week’s Highlights…

  • Ethan took his first two online coding lessons and LOVED them. He’s doing it through UCode, where he works with a live teacher on various coding projects. Ethan thinks his teacher Nick is great and can’t wait for the next lesson!

    happiness at first coding lesson

    Engaged and so happy during his first U Code lesson

  • He went to the driving range twice this week, once with Papa and again with Dad. He was feeling good and excited about how he was hitting the ball.
  • He enjoyed a day-long playdate with his buddy Luca, whom he hadn’t seen in a while.

    playdate with luca, jan2015

    It was so great to see him being silly with Luca

  • His time with his teacher Mrs. Lukkes is always a positive. After telling me what he did with her in an hour of school, I said, “Wow, you got through a lot with Mrs. Lukkes today”. Ethan: “She always puts me in a good mood…that’s her magic”. I continue to be so grateful that his amazing classroom teacher comes to our house for his schooling.
  • Ethan really enjoyed recording his lines for his school’s variety show. He has participated with the same group of boys since kindergarten, and although he can’t practice with the group or be on stage this year, his buddies (well, their moms) found a way for him to be included, which thrilled him. Thank you Laura for rallying last minute to make the recording happen!
  • Thank you Mills family for the so very thoughtful photo book — reading all of this buddies’ comments about him literally put a smile on his face from start to finish. Thank you also to Mika’s mom for the beautiful scarf and hat that she knit, Barbara and Doug of the yummy Katella Deli delivery, and all of the yummy meals that were delivered this week. The meals continue to help us greatly.
  • Quote of the week: As we were walking into
    foto book from mills

    Ethan was so excited about this special gift…it’s on his desk and I’m sure he’ll cherish it forever

    OPI I said, “Ethan, we have had so much quality time lately huh?”  Ethan replied: “Yea, that’s one good thing about this Leukemia”.  I followed up with “ Is there anything else about it that’s good?”  Ethan: “Yea, when I’m all done with it, going to the doctor and getting shots will all seem so easy after what I’ve been through.” This journey will definitely force him (and us all) to view life through a different lens.

hat scarf from mikas mom

Mika, he loves his new hat and scarf!

Ethan started a science blog, and he checks it regularly for new followers. During a time of separation from school and friends, he’s eager to connect with people, and his blog is one way that he can. Please check out his blog and even follow it if you’re up for it — each new follower that he discovers literally puts a huge smile on his face.

showing opi nurse his game

Ethan sharing his first coding project with his favorite nurse at OPI.

 

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Week 5 of Consolidation is Done

painting with grandparents

Painting with their grandparents, who are in town from New York

This past week was relatively uneventful (a good thing), and thankfully Ethan remained his “old Ethan” self. His blood draw on Monday did not result in a transfusion (I was sure it would so that was good news), and his four days of chemo went smoothly without any significant side effects. Ethan was generally happy and probably the most active that he’s been, playing ping pong and tetherball, going to the driving range, enjoying his new Xbox sports game, running around the house with his siblings, and even hitting a few tennis balls — it was all so great to see, especially given that just a few weeks before it was hard to get him to walk upstairs.

This was the second week since diagnosis that Ethan has gotten in all five hours of his home schooling — a relief for me to know that he’s getting in some quality instructional time beyond what I’m able to do with him on my own. Ethan’s second grade teacher (also his home-school teacher) is so fantastic, so every hour that he has with her I can rest assured that he’s cognitively engaged and doing some good thinking. In addition to his schoolwork, while at home this week Ethan enjoyed doing some science projects, is loving his new XBox, has been tolerating his loud little brother better than when on steroids and feeling crummy, and has been reading avidly. Right now he is very much enjoying Holes (by Louis Sachar) and Dad has been reading aloud The Hobbit, which the kids are greatly enjoying.

I said above that Ethan has been tolerating chemo well this week, although there has been a new, not so positive side effect that has really become more apparent. Ethan’s writing has really deteriorated — the difference in his writing from the beginning of the school year to now is tremendous. After doing some research and talking with his oncologist, we’re learning it is likely peripheral neuropathy, which is a common side effect of Vincristine (one of the regular chemos that he’s getting). Over the last several weeks, Ethan has become a reluctant writer, which he never was, and it has been hard to get him to do schoolwork that requires a considerable amount of writing (that’s one of the appeals of his science blog — I let him do a post to replace an entry in his daily journal for his teacher, and he far prefers typing). His writing has become less and less legible, he is complaining that his hands are shaky, and on Monday his teacher said she had to have Ethan read his work to her because she couldn’t read it at all. I immediately spoke with the doctor and received referrals for occupational therapy (for his hands) and physical therapy (for some apparent weakness in his legs), and he will go next week for initial evaluations. I tried to do his PT and OT through the hospital, but I was frustrated (and shocked) by what seems to be a strong deficit approach to treatment. I was told that there would likely be a three month wait because Ethan is not a candidate for urgent attention! Based on what we’ve seen so far with Ethan and what we’ve learned about the long-term effects of chemo on kids with ALL, we want to give Ethan every opportunity to be as strong as possible when he is at the other end of this journey, so we want to be super proactive. We’re not comfortable waiting until Ethan presents with severe deficits!

Ethan had a good week so it doesn’t require much work to find this week’ positives. It has only been a couple of months of a 3 1/2 year journey, and it’s amazing how I already look at my life/my kids’ lives differently. I definitely appreciate and cherish everyday moments and time spent together like I never did before.

A Few of the Week’s Highlights… 

  • Painting, playing games, and reading with his grandparents, who are in town from New York
  • Going to the driving range with Papa, lunch at the golf club, and hitting a few balls at the tennis club — all in the same day. We were shocked that he wanted to join Papa and Maddy on the tennis court, and decided it was ok for him to go if he takes it easy (and it was an uncrowded time of day at the club)

    IMG_0647

    Golf is a great sport for Ethan right now!

  • Making an ice cream sundae with all the treats from the Colburns and receiving the Science in a Box subscription from cousins Rob and Brooke — Ethan is excited about the monthly science boxes he will receive! Thank you Colburns and Liebermans!
  • Some special visitors came by this week: Ethan’s buddy Colin, big cousin Jamie (who danced to some Elvis songs with Ethan), cousin Sami, and Uncle Rick and Ann. As always, your visits keep both of us connected and feeling supported.

    ethan and colin, jan2015

    Ethan with buddy Colin

  • On Saturday, Ethan had an especially great time with his guitar teacher Luke. Their normal 45 minute lesson expanded to almost two hours (longer than Ethan lasts with anything these days), and Ethan was happy and engaged the entire time. When Luke left, Ethan said to me: “We played for half of it and talked for half of it, he has a really easy to talk to way and I think of him as my teacher and my friend.” Luke is awesome and we so appreciate the role that he has in Ethan’s life right now.

    ethan and luke 011115 b

    Ethan with guitar teacher Luke (and Eli our dog is always right in the middle of them!)

Another week down, and we head into week 6 of Consolidation.

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Week 4 of Consolidation is Done

new years eve, zovs2

Enjoying his favorite restaurant (Zov’s) on New Year’s Eve

We just finished Week 4 of Consolidation. The week got off to a bit of a difficult start on Monday. Ethan was getting ready to go into the hospital for blood work and a likely transfusion, while his siblings were getting ready to head out the door to go to their cousins’ house for a sleepover before flying to Sunriver Oregon in the morning with cousins and grandparents (a highly anticipated annual vacation including skiing at Mount Bachelor, one of Ethan’s favorite things to do). Ethan wasn’t feeling so good and was emotional, while Caleb was crying that he needed Ethan to come with him. A lot of emotions as everyone was trying to head out the door in different directions. It was hard to watch Ethan have to watch his siblings head off to Oregon, and it was equally hard saying goodbye to Caleb while he was so upset that his big brother couldn’t go.

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Ethan and buddy Quinn

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Note the tongue — Little brother can still be pesty 900 miles away!

We all made it out the door that Monday, and the first two days of the week were long. Monday’s blood work resulted in a day-long stay at the Outpatient Infusion Center for a blood transfusion and Cryo infusion because his Fibrinogen was low (a clotting factor). The next day was also long (another spinal tap and more chemo), but Ethan seemed to avoid any obvious side effects and had a good rest of the week. I think that the rest of the family was in Oregon was on the back of his mind all week, but he didn’t let it get to him and we had some really good quality time together, with Steve off work for a lot of it. We got out a bit, read a lot and played many games, Dad and Ethan did some science, he enjoyed some low-key outdoor sports, he received a lot of attention from some special visitors, and the house was unusually peaceful without the sibling interactions. Ethan particularly liked the peace and while he missed Maddy and Caleb, he didn’t mind the break for a few days!

Steve and I really enjoyed our quiet time with Ethan. For the first six weeks, the meds seemed to take over the Ethan we know. This week he was feeling better and just seemed back. He was affectionate, thoughtful, social, talkative, wanting to do schoolwork for the first time, and so full of Ethan wisdom and energy. I’m worried about this week ending and chemo starting up and taking over again. While I was glad that Maddy and Caleb had a good time away and also grateful for our time at home with Ethan — the pictures of the 4 cousins on the mountain (and in the airport and building snowmen and reading together in the bunk beds) were a blatant reminder of everything that E is missing right now. I think that he handled it so well also made it more difficult for me to take in; he’s 7, he should be able to be with the rest of his family enjoying life and being a kid. For the most part, he’s taking this so gracefully, and my heart aches for him. When he was first diagnosed and overheard me talking about whether or not to send his siblings to Oregon with my sister and parents, Ethan without hesitation said “Mommy they should go even if I can’t, I’m different now.” His tender and accepting attitude has made this easier and yet so much harder.

Highlights of the week…

  • Being surprised with Xbox One

    getting xbox

    Happy Ethan with his new Xbox

  • Going out to Zov’s (one of Ethan’s favorite local restaurants) on New Year’s Eve for a super early dinner
  • Counting down to the new year with siblings and cousins on FaceTime. Grateful for technology — though it’s a bit of a double-edged sword. He was really happy to be able to count down with them and see them, but I think it also made more blatant what he was missing. At bedtime that night, he said, “I wish I didn’t have Leukemia and could be in Oregon.” A quick statement, and then moved on to planning for his big cousin’s sleepover the next. day. I’d have expected a lot more of those words to be communicated  — again, amazingly graceful and accepting.
  • Reading aloud The Hobbit with Dad
  • Special time with some visitors, including cousin Kelly, Scott and Sandra, Davin and Sophia, Quinn, and Neri. Mom enjoyed friend time with Emily, Alison, Alli, and Anne.
  • Thank you Kadins for the New Year’s treats, Robin for the super soft knit hat, and for the yummy meals that were delivered.

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    The fort that Ethan and Cousin Kelly slept in — Ethan loved having Kelly all to himself!

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Counting down the New Year together, thanks to FaceTime!

 

 

 

Heading into Week 5 of Consolidation…

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Week 3 of Consolidation is Done

xmas eve dec2014

Christmas Eve dinner, Ethan looking good just before we discovered we were ER bound

Well this past week didn’t end up being as event-free as last week. Last Monday’s blood draw resulted in a subsequent platelet infusion (not a surprise). Platelet infusions are relatively short compared to blood transfusions but the infusion center couldn’t start Ethan’s infusion for several hours after we received the blood results, so it turned out to be a long day at OPI (Outpatient Infusion Center). Tuesday we headed to OPI early for his spinal tap/intrathecal chemo and two more chemo infusions — Vincristine (which he had received during Induction and caused severe constipation which posed some problems that required hospitalization) and pegaspargase (PEG-ASP), which is infused slowly due to the risk of severe allergic reaction. It was also a long day, but Ethan experienced no serious side effects and he went home feeling OK. That night, we celebrated the final night of Hanukkah. It really did seem like a Hanukkah miracle that Ethan avoided the ER and overnight hospitalizations for the duration of the holiday, especially given that Caleb had been home with a fever and persistent cough.

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Ms. Duff and Magnolia cheered up Ethan while at CHOC

Our “Hanukkah miracle” lasted as long as Hanukkah. Wednesday afternoon we headed up to my sister’s in El Segundo for Christmas Eve. Ethan was happy and the cousins were playing so well (Ethan even had lots of energy). At around 8:30 PM, he complained of the chills, and at 9:00 we discovered that he had a fever of 101.8, so we gathered our stuff and headed back to O.C. immediately, dropping off Maddy and Caleb with me while Steve brought Ethan to the E.R. (per protocol, Ethan needs to go to the ER for all fevers). Ethan was admitted and stayed for two days of I/V antibiotics (also protocol). He didn’t appear to have any infection, so the fever was chalked up to probably the virus that Caleb had.

The hospital stay was relatively easy, and Ethan was home by Friday afternoon. The week finished off OK, though Ethan was shivering on and off since returning from the hospital. On Friday at bedtime, just a few hours after he had returned home, he climbed into bed early with the chills. We grabbed the thermometer and prayed for no fever. It feels as if we are always on the cusp of needing to head to the ER. Our hopes and prayers have become so simple — just to be able to be home, together, with all 3 kids under the same roof. Something I never before cherished and now it feels like such a great gift.

Highlights of the week

  • Getting to light all 44 menorah candles at home together
  • Spending the last night of Hanukkah with Neri, the kids’ old nanny.

    hanukkah with neri 12 2014

    Lighting the Hanukkah candles with Neri

  • Getting through most of Christmas Eve at my sister’s, with Ethan happy and having fun
  •  Ethan’s first words to me after coming out of deep sedation after last Tuesday’s lumbar puncture: “Mommy, I’m so glad you’re here.” “Being here” is about all I’ve felt like I can do. I was grateful that he notices and that being here matters. How I wish I could be at more than one here at once! 
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    With cousins Kelly and Ryan

  • My “little” cousins Ryan and Kelly’s visit with the kids on Friday. All three loved doing science and magic with them. 
  • Pulling off our annual Christmas tradition at the Denes home. Erin, the expressions on my kids’ faces as you explained that Santa once again brought them some small gifts this year was priceless.

    xmas at denes 2 dec2014

    Thank you Denes family!

  • Stacey Duff and Magnolia’s (her therapy dog) visit at CHOC. As his admired kindergarten teacher, your and Mag’s visits offer double joy.
  • My Momma necklace, which I came home to Tuesday afternoon after a long day at the hospital. Thank you Robin, Audra, Adriene, Natalie, and Rachel —  I haven’t taken off the necklace since I received it and your words of support that day meant the world to me.
  • So many other gifts this week were shared: Thank you Thornes for the yummy tortilla soup, Blums for the Roma d’Italia feast, Saads for the complete Shabbat dinner including candles (the first one we’ve ever actually done in our home and we really enjoyed), Pondels/Kalans/Hawkins for the supply of gluten-free treats, Adriene for the Zov’s chicken noodle soup and Hanukkah goodies, Mrs. Lukkes’ 2nd grade class for the beautiful Hanukkah decoration with cards from everyone, Julie for our time on Sunday night.

I feel beyond words grateful for all the support.

 

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