Unplanned days at Children's

It's amazing how fast chemo can drop my counts!

On Thursday, they drew some blood before my MRI, and my ANC was in the upper 2000s, my hemoglobin was at 9, and my platelets and white blood cells were starting to fall, as well. On Friday at the clinic, they said that I'd probably need blood early next week, but that I had the "MRI of a normal, healthy, developing brain." Whew!

This morning (which seems like FOREVER ago), I woke up puking at 5am. I didn't act too upset, but Mommy and Daddy were concerned because there was fresh blood in the vomit. Daddy called the hospital, and the hem/onc doctor on-call said that we could either go to the ER at that point (and not be able to see anyone from hem/onc for a few hours), or hang out at home for a few hours and go the clinic to see someone from hem/onc. Needless to say, Daddy and I rested on the couch for a few hours. Nurse Lori came to take my blood at 11, and when she weighed me, the scale showed I was only 12.2 kg (which is the lowest I've been since early October). She thought I had a minor nosebleed in the middle of the night (perhaps due to the chemo or dehydration), but when I swallowed the blood, it caused nausea, which made me vomit. She told us to hang tight, so Daddy put me down for a nap. A few minutes after she left (and had called the hospital to talk to the doctor), she told us to get down to the hospital as soon as possible.

We got a room in the day hospital, and we found out that my platelets were down at 4,000 (that's REALLY low, since they are usually in the 100s of thousands), my hemoglobin was at 7.7 (they usually transfuse at 8), and my ANC was at 980 (not too bad). I got platelets first, then they started my blood transfusion right before Mommy arrived, and my color came back pretty quickly. I also wanted to eat and drink a little, which was a nice change.

We got into our room on A5S around 8:15, and we ran into Leah's mommy on the way. She visited for a few minutes, and she giggled at me when I told her how my tummy was saying "growl, growl." For those of you that don't know, Leah is a fourth grader from Mommy's school who was diagnosed with AML in mid-January. Though I've never talked to her, I hear that she is such a brave, funny, beautiful, and smart big girl (I'm pretty small, compared to her)! By the way, she's having her appendix removed on Wednesday, so we need to pray that all goes well with her surgery so that she can go home for Easter. :o)

Anyway, after more doctors and nurses listening to my heart and squeezing my arm to death (yes, the blood pressure cuff even left a bruise tonight!), I finally got to sleep around 9:45. Man, it's been a long day! I sure hope my counts are up tomorrow and I'm feeling better, because I'd like to go home...


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...


Home again, home again

Let me tell you... last week was a long week! Daddy was with me most of the week, and I wasn't able to see Mommy because she had a yucky stomach virus that she didn't want to give to me. My ANC finally went up to 480 on Friday, and I didn't have a fever at the end of the week, so they told us that we might get to go home on Saturday.

When Mommy came in to stay with me Friday night, she kept looking at me in a funny way. I overheard her telling the nurse that I wasn't speaking correctly... that I was "slurring my words" and that my speech sounded "delayed." She asked if I was on Oxycodone, and the nurse told her that I hadn't had any of it since the night before. Mommy told her that she was "very concerned."

During rounds the next morning (Saturday), the doctors told us that we could go home, even though my ANC was down in the 200s. They were going to pull the antibiotics and fluids and see how I did for a few hours. After discussing my slurred and delayed speech with the doctors, Mommy asked what could be causing it. Dr. Burns said that sometimes the medications can cause strokes. Mommy jumped at hearing this, and the doctors called for a CT scan to be done as soon as possible.

I found out that I wouldn't have to be "NPO" (without food or drink) or drink the contrast dye for this one, since it would just be of my head, so that was a relief. When we got down to the radiology department, I remembered it and started crying. The last time I was there, they stuck me five times to get an IV for the contrast, and then they ended up tubing me anyway. Fortunately for me this time, Daddy and Mommy were able to coax me into lying on the bed with Mommy, keeping my head still for two minutes so that they could take pictures of my head. Daddy promised to buy me toys and Mommy promised me makeup, and with Mommy right next to me (we could see the top of her head in some of the pics!), I managed to do what needed to be done.

The scans all came back negative, but Mommy and Daddy still had concerns. They asked the resident if we could get a neuropsychology consult when we come to the clinic on Tuesday. We ended up going home around 4pm, and I was so comfy and tired that I fell asleep during the drive home. Since then, I've had more energy and gotten much more sleep (!), but I'm not speaking very much. Mommy and Daddy keep trying to get me to talk, and I notice them staring at my mouth frequently as I try to communicate, but they are still convinced that something is wrong.

Maybe Dr. Absalon will have some insight tomorrow... I'm just happy to be home! I sure missed my house, my sister Lily, my own bed, and my basement.


And we're back in...

So I guess it was a virus last week, masked by the steroids. Though I was able to go home for a couple of days, I spiked a fever of 103 yesterday afternoon. Long story short, I ended up in the ER at 7:45 last night, and we finally were admitted to A5S around 12:45 this morning.

We're back in the first room we had on the hem/onc floor (552), and my fever was down today. I'm on two antibiotics (Vancomycin and Zosyn) for a course of 7-14 days (in the hospital). The doctors say that I need to be fever-free for 48 hours, be eating and drinking on my own, and have counts that are going up in order to go home. This morning, my ANC was 20, so it's pretty likely that it will go up.

Please pray that I start to feel better soon, my counts continue to rise, and my fever stays away. Also, say some special prayers for my friends and neighbors (including Leah and Liz) at Children's, as well as the doctors, nurses, and other staff members who care for me so well. We are so very lucky!

I'm tired, so I'll write more later. Love to you all...


Home sweet home

After my ANC dropped to 60 yesterday, I figured I would be in the hospital this weekend, but that wasn't the case! It went up to 100 today, they pulled me off the Zosyn (maybe my diarrhea will stop now) and my fluids, and they told me that as long as I started drinking a lot, I could go home. I was all about that!

While I'm certainly not complaining about going home, I'm still wondering what happened this week. We never did get any positive results back for viruses, respiratory infections, or bacterial infections. The doctors think it must've been some type of virus whose symptoms were masked by the steroids. Well, at least the next time the symptoms will show, because I'm all finished with 'roids! Yeehaaaa!

Thanks for continuing to pray for me. My ANC needs to be at 1000 next Friday (the 13th - ack!), and my platelets need to be at 100,000, so that I can get my next chemo. This will be the day that I have a lumbar puncture with Methotrexate, as well as Ara-C and Thioguanine and an overnight stay. Even with the hospital stay this week, I'm still on schedule!


Still at Children's

I don't know what's going on with my body, but I still feel bad. When anyone asks me, that's what I tell them, too! Mommy and Daddy thought I was going to get to go home today, but my ANC was down to 80 this morning. I didn't think it could go that low!

The bottom line is that my counts need to be going up (not DOWN) in order for them to release me. The doctors seem to think that I have a virus, but the steroids are masking the major symptoms. I haven't had a fever, and I don't have a runny nose. I still feel horrible, I'm very lethargic, and I have been spending my time in the hospital watching Dora (over and over) while lying in bed or rocking on Mommy's lap. I won't let her watch anything else... not even a different kids' show.

When I have told Mommy or Daddy that I have pain or I'm really irritable, they have given me Oxycodone (for the pain) or Clonidine (for the irritability). Right after the dose, I have a little 20-minute spurt of energy and niceness when I talk like I'm drunk and giggly and want to play, but then I get kind of tired or grumpy again.

We are going to be here until at least tomorrow evening. They drew some more labs today... one set to determine my IGG level to see if I need some more IVIG (intravenous immunoglobulin), and the other to look for viruses. They also swabbed my nose (a VERY unpleasant experience) to check for viruses. Looks like we'll be hanging out here for a little longer.

Please pray that I start feeling better soon and that I can fight off whatever is bringing me down. Also, pray for patience for Mommy (since I'm sure she'll have to endure much more Dora tomorrow). Love to you all...


Back at Children's

I need to tell you that I felt simply miserable yesterday. I didn't want to play (or even stand up) at all. The majority of the day was spent with me moaning in a fetal position on the couch. I only ate smoothies, and I made Mommy watch Dora all day long.

Daddy called the clinic this morning, since my condition didn't improve overnight. They told him to bring me in. We sat in the same room of the clinic (with no bed, mind you) from around 10:30 this morning until we were moved to the hem/onc ward around 5:30. I didn't eat much at all, I napped for only half an hour, and I felt like total garbage. Needless to say, when Mommy arrived in the clinic, I was fit to be tied. I just kept sobbing that I wanted to go home and I didn't want to go to the hospital.

They don't know what is going on with my body to make me feel so bad. The doctor had told Daddy last week to be especially observant of how I was behaving, because the steroids could mask symptoms of infection. I haven't had a fever or any other viral symptoms. In the past few weeks, I acted lethargic after Friday's chemo on Saturday, but by Sunday, I was feeling better and playing. Not so this weekend!

Before they got the blood tests back today, they were all set to give me a blood transfusion, since I looked so pale and I exhibited the typical symptoms for anemia. Once the tests came back with acceptable hemoglobin levels, they decided that a transfusion wasn't necessary. My ANC is down at 210, but other than that, my counts are okay.

Dr. Hummel seems puzzled by this mystery, and he told us that they would keep me here in the hospital for 24-48 hours on Zosyn and see what (if anything) the blood cultures grow. If I spike a temperature, then they'll need to start over to figure out what is going on.

Please pray for me so that I can recover from whatever is making me feel so bad. While I want to feel better, I also would like to go home and continue with the scheduled treatment protocol.