We had the week off, sort of. We were discharged from the hospital and were able to go the my aunt’s house to celebrate Easter like we do every year and Penelope had a good time but she was really tired. Her counts were good but her hemoglobin was low so even though she tried to play as much as she could she was exhausted. Upon discharge the doctor said that she should last until her next appointment on Tuesday and would have to be transfused then but I needed to keep a close eye on her. Well Monday she wasn’t feeling 100% but I was trying to lift her spirits just a little and we all know what makes a girl happy…The Build a Bear Workshop. I only planned on taking her there and bringing her home but she insisted that we stop by the Disney Store and so we did. We were wandering around and she didn’t really want anything, which is incredibly unusual for her, but she decided on a Mickey Mouse reusable cup. I went to find the pink one I had seen as we were walking through the store to ask if she wanted that one instead and left her playing with the carousel of little nick knack toys and came back and she was asleep on the floor! Another mom who was right there said she had just took her crutches off, laid down and closed her eyes. I was literally 4 feet from her and she didn’t say anything to me. I was freaking out at this point thinking that her hemoglobin dropped considerably. I grab our stuff and rushed out.
I called the hospital on the way in and told them what had happened and they said they would get everything ready, pre-meds, blood, a bed. What they do on her is called a type and hold. This means that they keep blood in her type on hold for her so I can’t encourage people enough to just give blood at your local blood bank. A lot of people always ask if they can give blood specifically for her but it’s actually kind of a long process to process the blood so it may not even make it to her specifically in her immediate time of need but if you try to give blood often regardless then the supply in our county will stay high and we won’t have to fly to other states to get it. That’s my public service announcement for the day When we got there they just swooped in and took us back. The transplant nurse came and changed her caps and reinjected the heparin into one of her lines using a dead cap at the end to preserve it for steam cell collection this week and they were able to use the other line for the medication and blood. We ended up in the clinic for almost 7 hours and she got a lot of blood. The premeditation they give her is precautionary if she were to have an allergic reaction. She gets Tylenol and Benadryl.
Tuesday she was a little bit grumpy and slept but when she was up she seemed to feel much better. Wednesday and Thursday she was fine and went to Tia and Marley’s house while mom was at work. Krystonia told me that she kept saying she didn’t feel well on Thursday so again, I had to leave work early to go get her but took her home and we snuggled and she fell right to sleep. After she slept for a few hours we woke up and made spaghetti, she loves to cook. So that leads us to today, Friday, we go in for labs today and her history and physical for potential admission on Sunday night to collect the stem cells. Basically what it is is a different kind of bone marrow transplant that they are preparing her for where the use her own stem cells in her blood to save and transplant after she’s done with chemo and possibly radiation, I’m not sure on that.
We go in again on Sunday to do counts again and if she is ready then the plan is to be admitted Sunday night for collection on Monday morning at 7am. What they do is hook her up to a large machine, what I was told is the size of a refrigerator, in her room and she stays in bed while it filters the stem cells out of her blood and puts the blood back into her body. It obviously will take hours because her body is little and they can’t move too fast because her body needs to make more blood with stem cells. I haven’t been told the expected time frame for that. From there she is scheduled to go in for round three of chemo on Monday the 23rd. Now if on Sunday her counts aren’t good for collection then we come back daily to check them again for admission that night. I was told that they don’t really look at her ANC on this procedure, they look at some other markers to determine if she’s ready and when I find out what that is I will let you know.
Now I was told that the next rounds of chemo are going to be high dose, which I already thought we were getting but apparently she has been getting a higher dose than she had gotten previously and the one chemo she had never had before. When they say she is going to get high dose it means the maximum amount of chemo they can use for her body. That’s more than a little scary. I am anticipating things are going to get much worse than they have been and this chemo will completely wipe her bone marrow out, hence the stem cell collection. I still only know that far into the game and hope that more will become available after the collection this week and how she responds to the next round of chemo. I haven’t been told either what the plan is for her follow up scans. I was under the impression that she was getting them after the last round but maybe because her counts dropped so low and she pushed us back a week they will hold off until the next round or possibly when we are inpatient for this round.
So, I prepare us for admission again this weekend. It’s a lot of packing and unpacking! Not to mention moving into a friends place while he is away on work so we can be closer to the hospital! We have totally taken over his house with girl stuff and bags of hospital stuff. I am going to try to organize that this weekend too…wish me luck!!