We're kind of in a lull on Ryan's care. He has a spinal tap with more intrathecal chemo tomorrow, then a bone marrow. Then we wait for the results and the decision about which chemo is next.
Ryan got a "spinal headache" after his last spinal tap. The needles used for spinal taps are quite small, and his are done under fluoroscopy (video X-ray) to increase the probability of getting through the "dura" (a tough membrane which holds encases the brain and spinal cord and cerebrospinal fluid) into the spinal fluid space on the first pass with the needle since he will need to have lots of them. Even with the small needles, patients need to lie flat for at least an hour after the tap to allow the tiny hole to close. If you can picture a tube of water with a tiny hole at the bottom of the tube, you can envision how the weight of the column of fluid causes the water to leak out. Lying flat for a while allows the hole to close.
Even though he did stay flat for an hour last time, he got a spinal headache - a headache caused by decreased cerebrospinal fluid (CSF). The treatment is to rest and hydrate. In cases of severe headaches, they can do a "blood patch" - where they put a slightly larger needle into the area outside the dura and inject some of the patient's own blood; the blood clots and seals off the hole in the dura. But the risk is that the larger needle could make a bigger hole.....
So the decision was to do nothing and treat his headaches with pain meds. The H/A's are better in the morning, but by early afternoon they get pretty severe. And Ryan is so happy to be out of the hospital he wants to be up and going. So he has been needing daily pain meds by early afternoon. Today it's quite a bit better, but still there. And tomorrow there's another spinal tap, followed by a bone marrow biopsy. I'll need to have them leave him on the gurney between procedures to see if we can minimize the likelihood of a spinal headache. The vincristine chemo will be put into the CSF, and that also causes headaches.
He has been sleeping better the past few nights. His spirits remain good.
He had CBCs (complete blood counts) on last Wednesday and Friday which show a steady increase in his neutrophils - the main infection-fighting WBCs. He was told he can go out in public without a mask. After much consideration, he decided to go to Sacrament meeting in church today. We had Tim and Sophia save seats in the front corner and slipped in late to avoid being in the crowded halls or near potentially infectious children.
Steak on the grill was a highlight of Ryan's day - one of the few things he wanted us to fix when he came home from school. It was scheduled for dinner on May 7th - Ryan's D-Day (Diagnosis Day), but didn't happen for obvious reasons.
Shannon is doing pretty well after her tonsillectomy in NYC on Friday. Still speaks in a whisper, but the pain and nausea are subsiding.
Her procedure was scheduled for noon. I went to her apartment in NJ to pick up her luggage, cat, litter box and cat carrier. "Tofu" wasn't happy that I crammed her into her carrier. I was stuck in traffic for close to 2 hours (2:30 pm on Friday) just going the one mile from the apartment to the Lincoln Tunnel, with the cat drying the whole time. Finally got into the city and the traffic was fairly light. By then the recovery room had called twice to say the Shannon was ready to leave. I called them back to recommend she empty her bladder (after lots of IV fluids) before we started our drive in case I got stuck in traffic again, and asked that they give her extra anti-nausea meds since she tends to get car sick on a good day, much less after anesthesia.
Once Shannon got in the car, we let the cat out of her carrier. She was getting hoarse from 2 hours of continual crying. Shannon did well on the drive, and we got home a little after 10 pm. The cat has been in hiding ever since, too traumatized by the carrier, the drive and the dog.....
A pet mouse escaped during the weekly cage cleaning today, and took a while to capture. Darn thing is quick on her feet! Should have just gotten the cat......but she was in hiding. Where's a mouser when you need one?
Sophia is adjusting to being a working girl. She's fixed up their room look very nice. Ryan fixed her lunch on Friday and she cam home during her lunch break. We're so proud of her. Ryan really misses having her around all day.
Kaia's dance recital was on Saturday - and we really enjoyed the show. Afterward we went out to eat with just Tim and I and Kaia. It's rare for her to get alone time with Mom & Dad. And today she gave a talk on tithing in Primary (the children's Sunday School class).
MeiLin went to a basketball tournament in CT and rode with another mom who graciously volunteered to take her along on the overnight trip. She had a great time, and returned tired today just in time to go to church with Ryan and I.
We skype'd Sean & Shauna today. HAPPY BELATED BIRTHDAY, SEAN!!!! 31 YEARS OLD!!!!
We're recognizing the challenges of being the donor from overseas. He will be saving his time off so he can travel here for the donation if he's the donor. Emergency leave is officially only allowed for parents, spouse or child of the employee - much like the military. Although he's pretty sure his supervisor will allow him to leave, the timing can be problematic if other people are already on leave, etc. We'll just hope that if Sean is the donor, God will have a plan for all the logistics.
As for me - a relaxing day yesterday, and a nap today. Enjoying the peaceful moments when they come!
---Barb
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