Michelle went in for clinic today to get updates. We had a few tense moments over the weekend, but I’m beginning to get the feeling that even on our “off” days when there aren’t any major meds, we should just get used to that.
On Friday just as we were wrapping up to go home, we had a slight slight bit of Harlequin Phenomenon reappear. It was about the same as Thursday, but it went away in about 10 minutes and was less distressing this time since we knew that it was temporary.
As we were helping change her dressing before going home, we noted a little bit of discoloration like a scab around her line entry. Infected Central Lines are a real danger, so we have to be super careful with that. We pointed it out to the nurse doing the change, and she took a culture to be sure it’s not infected. No word back on that.
On Saturday we were off Hydroxyurea until her platelets returned to a safe level, and then on Sunday we had a follow up clinic visit to check counts. Platelets were up to 152, so we resumed Hydroxyurea at 80% dose to keep her immune system suppressed.
Sunday night Michelle was up much of the night. I had gone back home for an overnight to pick up supplies, and for some reason Zoe was sweating and seemed chilled. She spent a good deal of the night trying to be sure there was nothing wrong since, though the signs were not uncommon, we hadn’t seen her doing any sweating in recent days.
Every little thing out of the ordinary becomes something to obsess and worry about.
Michelle called me at 3am to put our heads together, and I waited on the phone for awhile to hear what was going on as Zoe got changed into some drier clothes and Michelle made her more comfortable. As she woke up from the change, Zoe seemed to settle out and stop fussing. Her color improved and she started smiling and wanting to play — not what we’re usually after at 3am, but in this case a very nice sign. With only a few hours left before being back at clinic and Zoe’s demeanor much improved, we decided to wait it out.
Which brings us to Monday clinic. All went fairly well with Zoe’s immediate condition — whatever was going on over night appears to have been the result of getting too warm while sleeping and sweating, then cooling off and getting fussy.
Her blood pressure readings were phenomenal, her best since getting sick and starting treatment: 77/46 & 70/41. Her blood pressure meds have been discontinued temporarily as a result. Very very good news considering our kidney worries.
Maya has had to stay home these past two weeks, and it’s been hard having the family separated. Right now though, Zoe is in a delicate spot and needs as clean a living space as possible. Soon we’ll be inpatient and it won’t be in our hands, but until then we have to play it safe. It’s rough on Maya, we hate not being able to see her every day.
In then end though, we have to put it in perspective and remember that this period of time is but weeks in our lives — being safe, keeping everything clean and taking every precaution is a pittance compared to the value in seeing Zoe safely through this.
Dear Evan and Michelle,
I found your journal through the Histio message boards, and have been running to my computer every chance moment I’ve had during the day to read all your posts about Zoe. My son Jackson was diagnosed with LCH when he was 4.5 yrs. old. Went through 6 months of chemo and now fast forward 10 years and we are in Chemo again this time for the dreaded Neuro Degenerative Central Nervous System Langerhans Cell Histiocytosis or ND CNS LCH. So much of what you explain relates to our current situation and I wouldn’t be surprised to see SCT in the future for ND CNS LCH. Right now we are in month 10 of 12 to 18 months of Chemotherapy. I will watch Zoe with a prayer in my heart, love these histio heros, amazing kiddos all of them.
Best of Luck,
Thanks so much for your interest and prayers! I am terribly sorry to hear you’re back in chemo, I know how hard that can be. I hope that Jackson sees the end of his chemo this time, and makes a full recovery soon. We will keep an eye on your blog to for good news!