A planned overnight at Children's

Wahoooo... my ANC and platelets were high enough to continue with treatment Friday morning! I only needed an ANC of 1,000 and platelets at 100,000, but they were 2,270 and 679,000 respectively on Thursday afternoon. Mommy and Daddy were pretty shocked that they had gone up so much since last week, but I guess my body is cool like that, and I'm so glad we're back on track with my treatment. I really want to move on with my life!

We had to be at the hospital at 6:45am, so that meant I needed to be up almost three hours before I normally wake up. I was actually in a good mood until I asked for Sun Chips (Cheddar Harvest flavor... my new favorite!) and Mommy told me that Daddy had them in his car and that he was chasing us to the hospital. It seems an odd coincidence that some mornings when we go to the hospital that we forget foods and drinks that I want. What's up with that?

We waited in the panda room at the clinic for almost two hours, but I got to watch Pinocchio on what looked like a cute little computer. That helped the time go by faster, but Mommy and Daddy wouldn't let me eat or drink anything, and my tummy was growling. They kept telling me that the food was "coming." That's what they always tell me when we order room service at the hospital, but I didn't ever hear them order it.

Mommy carried me over to the OR, and I started fussing before we even walked through the door. I remembered this place... it's where they give me that "milk of amnesia" stuff that makes me go to sleep. I don't like that feeling, and I fight it until I drop off.

I woke up very happy and alert and didn't even cry this time. They had a baby crib for me in the panda room, and I got to finish watching Pinocchio on that little computer. I actually got to watch it two times, since we were in there so long. I overheard everyone talking... they said that even though they knew we were coming to stay the night on A5S, the floor was totally full. They said that even the overflow, the BMT side, and the day hospital were full. Wow! That's a lot of sick kids! Apparently, some virus is going around (probably like what I had the last two weeks), and all of these kids had to be admitted. A couple were going to be discharged in the early afternoon, so we needed to "hang tight" in the clinic. Good thing I had a crib so that I could be comfy!

Nanna B. came to visit after Daddy left for work, and I heard Mommy talking to her. She told Nanna B. that Dr. Absalon mentioned three things that could have caused the slurred speech I had. One was a virus that causes a Bell's Palsy type of reaction (nothing they can do... we would just need to wait until it runs its course), and the other two were chemo-related. He said that one of the chemo meds that I had could have caused a blood clot, which might have resulted in my slurred/delayed speech. He also told Mommy and Daddy that sometimes the methotrexate could have weird side effects, one of which could have been my problems speaking. Dr. Absalon said that he wanted to do an MRI in the next month to make sure everything was okay, and that he might be able to tell from it what is going on. Luckily, I started talking a lot (and more clearly) on Thursday, and my speech has gotten better since then. Mommy and Daddy are still relieved that Dr. Absalon is going to try to figure out what happened, though.

I ate almost an entire BIG family-sized bag of cheesy Sun Chips, drank two full sippy cups of apple juice, watched Pinocchio twice, Baby Neptune twice, and had just started the second Max & Ruby episode when they came to give me some more chemo (via my central line) and take me to my room on A5S. I put my hands up in the air as Nurse Kate pushed me down the hall (hey, it's the closest I'm getting to a roller coaster anytime soon!).

The rest of the evening went pretty quickly, although I was pretty tired due to the fact that I got up three hours early and didn't ever take a nap. I played in the play room and grabbed some toys and movies for our room, since the playroom unfortunately closes at 5pm on Fridays. Daddy came back from work, and he brought me a fancy purple Ariel cup, some bubbles, a ball, and some pink smoothies. Around 7pm (an hour before I could have more anti-nausea medication), I puked up the smoothie I had just finished. I suppose that the puking could have been the result of any number of the drugs I had received during the day (intrathecal Methotrexate, IV Cytoxan, or IV Cytarabine). There was still one more type of chemo, though, so they gave me some more Zofran, and then I got the Thioguanine around 9:30 so that I could finally go to sleep. Allie was my nurse for the night (yay!); she played with me a little and gave me fishy stickers before Mommy and Daddy put me to bed.

I slept pretty well, except for the least sneaky PCA ever, who came in to take my vitals and change my diaper. Allie is a great night nurse (and day nurse, for that matter), but she just couldn't head off the PCA fast enough. My blood pressure was relatively low throughout the night, but they told Mommy it might have been because I was sleeping so deeply. What do they expect, when I was more than six hours behind on my sleep?!

I had lots of energy on Saturday morning, and it was hard for Mommy and Daddy to keep my line untangled. I had to be hooked up so that they could give me my IVIG (immunoglobulin), which took about four hours. Before it started, though, the nurse gave me Benadryl and Tylenol to prevent an allergic reaction, but Benadryl typically makes me mean rather than making me tired. Once the play room opened, I played for little while and got some new toys (my favorite was a basket of plastic Easter eggs with animals and figures inside). Shortly thereafter, the play room closed, and I had to go back to my room. I wasn't happy, and I was quite bored in that little room. Mommy told the nurse how much easier it was to stay in those rooms when I wasn't feeling well. Finally, they gave me my dose of Cytarabine (Ara-C), and they discharged us around 2pm.

I woke up from my nap at home around 5:30, and I got to play with Lily all evening. I missed her so much over the last week! I took my new oral chemo medicine (Thioguanine) before bedtime without a problem, because it's pink and tastes yummy. Mommy, Lily, and I read books in Mommy and Daddy's bed, and I slept a heavenly sleep in my own bed.

Here are the bullet points of the next couple of weeks:
  • Home care will come out Sunday morning and Monday morning to give me Ara-C
  • I'll get Thioguanine each evening for the next couple of weeks (a total of 14 days)
  • Home care will draw labs on Mondays and Thursdays, and I'll go to the clinic on Tuesdays and Fridays
  • I can start Interim Maintenance #2 on April 17 (Papa's birthday!) if my ANC is at 1,000 and my platelets are 100,000

Please pray that I stay healthy for the next two weeks and that my counts are high enough to move me along to IM... we liked IM #1 a lot! Love to you all...

1 comment:

Supurrkitten said...

How long will you be at CCHMC. Can she have any visitors? Maybe I could do a drive by on my way in one day, or not if she isn't up to it.