I know it drives some of you crazy when I go so long without updates. However, the typical scene is a day full of clinic or activities, a dinner at the Ronald, Eli wanting to play in the room or play room, getting meds done, finally getting him to bed around 11pm, winding down with some TV or a movie, then getting to sleep around 12-1am. Actually, there hasn’t been too much to report except “fun stuff” up until today.
Eli officially went neutropenic Wed. Remember, this high dose cytoxin makes you crash to zero. The good news is that Eli decided that he didn’t mind wearing masks if it allowed him to continue to do fun things. Another aspect of this is that Lacey and I always wear “sympathy masks” so that he’s not the only one. Plus, we don’t want to catch something either since we don’t wear masks when we’re back in our “safe room” at the Ronald. The rule is that if Eli is out of his room at the Ronald, we all wear masks. If someone visits him in his room, the visitors wear the masks.
The most recent news is that Eli finally hit his neutropenic fever last night around 9pm. If the temp is 100.4 or greater, you’re coming in. It was 100.5 and 100.6, so I brought him. It had climbed higher by the time we got to Urgent Care. They put him on two basic antibiotics and started the blood and urine cultures. Tylenol got his temp down, but he was low on platelets, so they gave him a transfusion and this morning his hemoglobin was low, so he’s getting blood right now as I type. Around 2am they moved us from Urgent Care upstairs to In Patient. He is in his own room because he is on isolation.
Mon. they have an echocardiogram scheduled to check on Eli’s heart. Thurs. they have a CT scan of his chest/abdomen/pelvis along with an MIBG injection. Fri. they have an MIBG under anesthesia scheduled, followed by bone marrow biopsies. So this upcoming week is definitely “test week.” Dr. Kushner just stopped in a few minutes ago and gave me a few more pieces of news. First, they want to stop his last blood pressure med because his pressures have been fine. So no more amlodopine! We had stopped the lebatelol and enalapril a while back, so here goes the last one.
Also, they are going to double and then triple his G-CSF shots (that make his counts come up) because they are planning on doing another stem cell harvest here. Since Eli has had 6 rounds of chemo, they aren’t sure how successful it will be, but he said they often have good luck with it. Your first question might be, “But why are you doing that when you have stem cells that tested negative for neuroblastoma in the freezer in Iowa City?” The reason is because Dr. Kushner feels like the chemo Eli had in I.C. wasn’t strong enough and that the stem cells we collected there are going to be more prone to developing HAMA. If they have to use them with their treatments (remember, they don’t do stem cell transplants, so they won’t plan on using them for that, there are other reasons they would want to utilize some of his stem cells), they want to use stem cells that have been through higher dose chemo that will have a lower risk of developing an immunity to the 3F8.
So for those of you looking for the prayer requests, they include:
1) That Eli’s counts would rise quickly.
2) That Eli won’t have any bad infections that are causing this fever.
3) That tests will go well this week.
4) That the stem cell harvest later this week will have good results.
5) That Eli’s blood pressures will be stable and he won’t need the meds.
6) That Eli’s pain and blood when urinating will be figured out and resolved.
Did I ever mention that his adrenal function tested normal? That allowed us to discontinue the hydrocortisone (which he potentially could have needed for the rest of his life). That’s a praise. It basically means that his right adrenal gland is taking over for the lack of the left adrenal gland and he is doing fine without the left one.
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