BMT +19 (Sunday, day 35)

Today completed 5 full weeks away from home in Wisconsin. But really it is 6 weeks away from home for me and Naomi because that last week at home she was an inpatient at St. Rose and we were there for 7 full days.

Caitríona, Sinéad and I started the day early. We got breakfast in the family kitchen. Then we made our way to the bridge and over to Naomi for Dr rounds.

It is truly a miracle to see the improvement in labs today.  Today’s labs indicated quite a bit of improvement. Her total white blood cell count doubled from 0.1 to 0.2. Within that white blood cell count, her new ANC is 156 (up from 64 yesterday). Also, her reticulocyte (immature red blood cell) count is increasing. It was 10 when we arrived and is over 13 now. That means her body is making more red blood cells and more white blood cells. She is still transfusion dependent and may need a red blood cell transfusion at any time as her levels fell from 7.5 to 7.2 overnight. This isn’t as much as a drop as she’s had before though.

I have to admit that with her first transplant failing I was afraid we might never see an ANC in her again. I didn’t believe it until I saw it. The Dr said it was there Friday but I didn’t believe it until I had the manual differentiation charts added to MyChart app on Saturday morning. To live through a miracle once is a gift. To live through this twice seems unreal. Just because we’ve been through it before doesn’t mean it is any easier the second time. Illness doesn’t work that way. When leaving Naomi for the night, she said she was wondering if her counts would drop again in the morning. Poor girl is having the same concerns as me. After the first transplant we all had some PTSD. I can’t imagine how changed we will be forever after a second a transplant.

One more day of increasing white blood cell numbers and she will be out of here tomorrow for sure. During rounds, we agreed with our Doctor to stay another night so that she could get immediate care if a fever showed up. With her being off antibiotics, there is a greater risk of infection since her cells are coming in slowly and still so low. With her first transplant she had to have ANC over 500 for 3 consecutive days before being released on Day +27. So tomorrow would be a lovely release, a full week earlier than last time. A normal ANC is 1500 or more. Under 1000 is immune-compromised. Under 500 is critical. Even walking out the door at 200-300 will be risky but she will have daily clinic appointments and special precautions to protect her. It is still a higher ANC than she’s had for weeks prior to the transplant and while flying here.

 

We rode bikes, walked the halls and played with the play kitchen and Little People in the playroom until Sinéad was ready for a nap. She slept in Naomi’s bed again.

Naomi was allowed to leave the HOT unit for the first time since chemo. It had been about 4 weeks since she went out those doors. We went to the cafeteria to pick up lunch. Then we brought it up to the family area in the HOT unit to eat.  She wanted and ate a huge salad from the salad bar.  That’s my girl.

In the late afternoon, Naomi played Wii with a volunteer so I took the little girls back to the RMH to get a few housekeeping things done in preparation for Naomi to be released soon.
After dinner, we took a wagon to Naomi’s room to start cleaning out the hospital room.

Sinéad fell asleep while watching the baking show which then gave me time to pack the wagon without her taking things back out of the wagon.

Making our way back to the RMH for the night.  Hopefully the next time we go this way, Naomi will be with us!

One thought on “BMT +19 (Sunday, day 35)

  1. I love this blog. I look forward every day of reading it and finding out what’s going on and how Naomi is doing. You’re still in our prayers and thoughts!

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