What a whirlwind life is for us right now. Since I last posted, Penelope and I had a 3 day/2 night stay for round 3 of chemo and although I slept horribly she seemed to do very well. Obviously she can’t tell me but she slept through the night both nights so I am taking that as a queue that she was feeling okay while we were there. We had our amazing super nurse Siobhan on Wednesday and she made it her mission to help us get home right after her chemo that day. It becomes hard with the timing because once we get to the hospital she is hooked up to fluids, has labs drawn and urine samples done, which can obviously pose a problem when the patient is a little one who wears a diaper and generally pees at all the inopportune times when her diaper is off. They check her CBC and the specific gravity of her urine to see if she is hydrated enough. They normally hydrate her for 3 hours prior to starting chemo and for this round on day one she had 2 chemo meds, each ran over an hour, and then she is hydrated for at least an hour afterward. They really don’t ever take her off of the fluids but the rate at which they are infused changes so right after chemo the infusion rate is higher. Day 2 and 3 she just had one of the meds but it has to be 24 hours apart, which they call Q24, and since it was the second med on day one it ended up being infused at 5:00p. So on day 3 we had to wait until 5:00p to have the chemo started, it is infused over an hour, hydration for an hour which would make it 7:00p – right at shift change. Our wonder nurse Siobhan spoke to the doctor to find out how we could be able to go home before her shift ended so we didn’t have to wait for the night shift or stay overnight again. Needless to say she made it happen and we were home late Wednesday night.

Thursday we actually got to stay home! We were going to have physical therapy at 7:30a but our therapist was ill so yea for one day off! We just worked on her at home, like we do everyday, and she is getting stronger. Friday we were back in for our GCSF shots, came to the inpatient unit Saturday and Sunday for the shots again and then Monday we had to come in for labs/shots. When she has labs and GCSF we have to wait for an hour after they draw her labs and then see what her counts are so we just cruise around the hospital so she can say hi to everyone, and believe me she does. I can’t help but think how her smiling face with her cute waving hand may just make someones day as much as it makes hers to be able to do it! Today was a short visit, just for her shot, but it always seems like a fun part of her day honestly. She loves everyone that works there and she gets a special gift from the treasure chest when we leave and she knows it.

We did have a milestone over the weekend. Her hair has been falling out in a large, LARGE spot in the back of her head and everywhere else it was breaking off, leaving it looking really choppy. In all honesty it looked like she got a hold of some scissors and cut it herself if that helps with the visual. So Auntie Robyn came over with her clippers and we had a hair cutting party in the kitchen as I wept quietly afterward. Sometimes the emotions just take over, overwhelming me, and that was a big one for me. I know she has no idea and I always, ALWAYS make sure to not let her see me sad or crying because it is very important to me that all of this not be associated with sadness to her because I don’t want her to be scared. Even if she is scared, I don’t want her to think I am because it would make her more scared.

Since being discharged from the hospital she seems to be feeling okay except she screams in her sleep. While she’s awake she doesn’t seem overly pained but for some reason in her sleep she will just start screaming like someone is pulling out her toenails. I updated the nurse about her recent reaction to the chemo, because previously she would just throw up once and then seemed fine. The nurse told me that the most common side effect of the GCSF shots is bone pain, sometimes severe, which would explain the night screaming. It makes sense that the bone pain would be present because the GCSF is stimulating the marrow to produce all the components of blood. Your body repairs itself more rapidly when your resting so it would be appropriate to deduct that that would be the source of her discomfort. It happened last round also and Aaron and I honestly just chalked it up to her getting 4 molars and 2 incisors at one time but without her being able to tell us it makes it so hard. I almost wish I could talk to a child who is on the same protocol as her and ask them how they feel just to understand it better from someone who is experiencing it, not someone who read a book or heard it from someone else. I just wish she could tell us.

With all of that going on, Aaron has been a champion chugging along with work, trying to get things moving with the organization so we can be available for other families soon, getting our car repaired, helping with dinner, laundry, dressing changes, etc. We always laugh together talking about how before we thought she was a full time job but what we wouldn’t give to have that job back. We obviously wouldn’t trade Penelope for anything (I mean have you seen her!) and we know there are vast improvements but it is definitely something else in an of itself to have a sick child. Her day to day life shows a vast improvement, which is what we are most happy for. For 2 months, maybe more, prior to coming to the ER she would just cry and cry, all day. She was miserable…and now she waves at everyone again and says “Hiiiiiiiiiiiiii”. She is such an angel.