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.
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.
- 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!
- 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.
- 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.