Round 3 of Interim Maintenance is Done

Ethan working with Lukkes, 0402152

Ethan and his dedicated teacher Mrs. Lukkes doing school at the hospital.

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.

    Ethan was serious about measuring the perimeter of the 5th floor loop that he walks at the hospital. The outcome: 10 1/2 laps = 1 mile!

  • 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.

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    Ethan with his cousins at our Passover seder

  • Ethan enjoyed spending time with friends who visited — he especially enjoying playing with the Kneller boys as well as his buddy Aidan’s visit.

    A serious 3-hour Scrabble game with the Kneller boys!

    An intense 3-hour Scrabble game with the Kneller boys!

  • 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.
    Enjoying ice cream on Balboa Island

    Enjoying ice cream on Balboa Island

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    Our day at Balboa Island was made even better when we ran into the Kadin girls and got to hang with them for the afternoon.

     

  • 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.

    DSC_0680

    Celebrating his 8th birthday with his cousins and some great friends

  • 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.

    april 12 2015, calvin and hobbes 4

    Max and Ethan reading Calvin and Hobbes — I love these two together!

  • 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.

    ethan loving his new scooter 2, april 10 2015

    “This is the best present I ever got!”

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!!)

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Chillin’ with his buds at his birthday celebration

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Ethan couldn’t have been happier that Luke played for him at his party!

ethan bday celebration, ethan and jamie, april 10 2015

Cousin Jamie, you’re the best!

 

Cousins at Passover!

Cousins at Passover!

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3 Responses to Round 3 of Interim Maintenance is Done

  1. Julie says:

    Happy birthday Ethan! We love you!!

    Like

  2. Fay Pondel says:

    What amazing courage you have, Ethan!! Sounds like
    you had a wonderful Birthday celebration with so much
    love around you!!
    All the best to you & your family,
    XO Fay & Rog

    Like

  3. Joni Kneller says:

    I’m so glad that things seem to be going “smoothly” if such a thing exists. I’m so glad he was able to celebrate his birthday with a few friends and lots of time with your amazing family. We truly treasured our time together and we can’t wait to do it again. Love you guys! Happy birthday E!

    Like

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