april_showers_john_doyle_470-1Saturday, 22nd

Today, we said goodbye to Spring Break and handed the kiddos back over to the grandparents. It was wonderful to have the kids here and have family time. We hung out and watched movies, played Yahtzee. It was good. It was a long drive to try to meet the parents about halfway, and Mark wanted to go along for the ride even though it went a tad bit outside our 20 minute safety zone. It was rainy the drive home (hate driving in that!) maybe Mother Nature knew we didn’t want to say goodbye to the kids.

Friday, 21st

Yesterday, we had our first clinic appointment. Everything went well. They had time set up for Mark to get platelets, but the counts held and he didn’t need to get any. We got to ask the nurse practioner, “Now what?” and the answer was pretty much wait and see. I asked how long, approximately, do patients have to stay local and she said they never let anyone got before day 60. So we will have to stay in St. Louis and our rental until then. He is supposed to take his temperature twice a day, keeping any eye out for any infections. Even though his counts are great, they are great for a post-transplant patient at this stage in the game. They aren’t anywhere near where they are supposed to be to be considered not to be immune-comprimised. (How many “to be”s can you fit into one sentence?) He is allowed out of the house, but he has to wear his mask. He has been taking his walks, about a block (not quite around the block yet) and back. But still gets tired really easily.

Wednesday & Thursday, 19 – 20

MJ here: Well, the past few days have been an adjustment. I felt pretty good while I was in the hospital, but now being an out patient fatigue and nausea are the main issues. There is only so far you can go in a hospital room and one or two laps was not enough. Walking around the house takes far more energy, and kids were a blessing and they tired me out quickly. Nap time! The Qigong and meditation helps both, but there are times I just get overwhelmed. Terri hates it when I get to that stage, and I’m no fan either. Looking for the balance.

Something I did not expect was the nausea, I thought that resolved in the hospital. Nausea is a not fun, as it interferes with wanting to eat. And I have to eat! It also drains the energy out of me. I’m pretty sure why I’m getting nauseous. I went home with a small grocery bag of meds. Most of them are in the morning, so I’m trying to space them out, eat a little, then take some more… wash/repeat. Sounds easy, but nothing goes as planned. I will get into a routine, it’ll just take a while. Hey now!… back to Terri.

Meds he is on currently: anti-nausea, anti-fungal, pain med as needed, anti-rejection, anti-viral, anti-reflux. Lots of anti-s.

Blood Counts from yesterday:

  • white blood cells – 5.5 (up 1.8)
  • ANC – 3630 (up 411)
  • hemoglobin – 11.6 (up 0.1)
  • hemocrit – 32.3 (up 4.3)
  • platelets – 28 (up 12)

With the platelets, he got infused in the hospital if they were below 10. As an outpatient, he will get infused if they go below 20. I am not sure what the number is for hemocrit as an outpatient to get blood.

Next set of appointments is on Tuesday, April 2nd for labs and transfusion, if needed. For the next couple of weeks, he goes into clinic about every 4 days. On Friday, April 5th is the first post-transplant bone marrow biopsy. (Yeaa! ~ mj)  Those come at days 30, 60, and 90. One of the things I know they are looking for in the biopsies is the percentage of donor cells, to his own cells. You want to see a high number of donor cells.

On the what the heck are we going to do with ourselves while we are waiting… I will be working every minute that I can. We got the internet speed at the rental increased (it was less than 1.0 mb before) so we will watch some movies, Star Trek and spend sometime surfing in Second Life. The next couple of days we are watching a live surfing competition going on in Australia (go Kelly! but my girl Sally got knocked out too early) in the late afternoon and evenings.

But that’s all for now, Happy Easter,
Me ka `oia`i`o

1 Comment

  1. Linda Senenfelder

    Happy Happy Easter to you both. Sounds like things Are looking up. We se d prayers for continued success