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.

    mad science2

    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

jan2015, haircuts at home

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.

01252015, more guitar fun

Chatting and guitar playing with Luke

Face Time, Maddy and Ethan

Happiness while FaceTiming with Maddy

Facetime with Max and Sam

And more happiness while Facetiming with Max and Sam.

01252015, Facetiming Indy500

Cheering on his car from home.


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