Living it up

I've had so much fun since I've been home! Though my ANC has been slow in coming up, my platelets and hemoglobin are doing well, and I'm feeling great. I've been playing outside on all of the nice days, and my appetite is picking up.

I spent this weekend with my favorite people. Saturday, we played at Nana and Papa's house and celebrated Mommy's birthday, and today we went to Nanna B. and Poppa's house (with Daddy!!!) to have brunch for Mommy's and Avery's birthdays. Daddy, Mommy, Lily, and I then went to see Sesame Street Live - When Elmo Grows Up at NKU (thanks to Aunt Renee). It was a blast! I really wanted to hug and kiss Elmo, but unfortunately, he didn't make it up to our seats. My favorite song of the night was "The Itsy, Bitsy Spider." Lily made the comment that we were a family again and that she loved us all walking together as a family. I saw Mommy and Daddy nodding their heads, and I agreed with her, too.

I was supposed to have an ultrasound on Friday (just to double-check that my liver is working correctly again), but I wouldn't hold still or be quiet, so Daddy and I left without the ultrasound.
We're scheduled to go in to Children's on Tuesday to begin my next round of chemo. This will be Interim Maintenance #2, and as long as my ANC is 1,000 and my platelets are 100,000, I'll get Vincristine and Methotrexate via my central line, as well as an intrathecal dose of Methotrexate on Tuesday. I'll go to the clinic every ten days for chemo and a physical exam, but I'm hoping that my hair will continue to grow back and that I tolerate it as well as I did the last time.

I'm tired after such a busy weekend, so I'll give you more details soon! Love to you all...


Going home anyway!

Yay! Good news... the doctors are going to let Daddy take me home today, despite the fact that my ANC is only 140. I guess they realize that I'll probably be exposed to less germs there than in the hospital, so my chance of infection is a little smaller. Either that, or they're just tired of having me climb the hospital walls...

It's a wonderful day! Thank you for your prayers.

ANC today

Ugh... it only went up to 140 this morning! I guess I'll still be here tonight. Please pray EXTRA hard tonight!


Need some prayers tonight!

As if you haven't been praying enough for me...

I need lots of prayers tonight! I'm not allowed to go home from the hospital (yes, I'm still there!) until my ANC (Absolute Neutrophil Count) is on an upward trend. In case you've forgotten, neutrophils fight infection, and a healthy person has an ANC greater than 1500. Mine was 350 on Saturday, 220 on Sunday, 120 on Monday, and 110 on Tuesday. Not exactly an "upward trend." This morning, I went up to a whopping 120! Daddy told the doctors at rounds that we were packed and ready to go, since my counts were up. They got a good chuckle out of that. Most kids need to have an ANC of 500 to leave, but they told Daddy I could go home if I got up to 200.

I REALLY want to go home, so if you can please find time tonight to pray for an ANC of 200 for me for tomorrow, that would be great. Thank you, and I'll keep you posted!


Turned the corner

I absolutely LOVE this pop-up ball game that I got from the nice ladies in the playroom! I squeal with delight as I play with it.

Daddy and I prowled the hallways a couple of nights ago with my new foamy rocket gun.

I didn't like wearing the oxygen cannula in my nose. I much preferred using it as a headband.

Okay, so everyone's saying that I've "turned the corner." I don't know what it means, but I think it's good. They smile when they say it, and I'm feeling tons better each day.

My belly has gone back down to its 2T size again, and my weight has returned to my admission weight of 13.4 kg (29.48 lbs.), down from 16.2 kg (35.64 lbs.) on April 3. I'm so glad! I really thought my tummy was going to explode last Friday (since that was where all the weight was), and that would have been kinda messy.

My counts are continuing to improve each day. My platelets and hemoglobin are sticking around, and I haven't had a transfusion since Sunday or Monday.

Here are today's numbers:

Hemoglobin - 11.7 (normal is 11.5-13.5, but they don't transfuse me until I'm below 8.0)
Platelets - 25K (normal is 135K-466K, and they will transfuse me if I go below 10K or am
actively bleeding; these actually went up a couple of thousand on their own today!)
ANC - 420 (up from yesterday's 210, but it's supposed to be low right now due to the delayed
effects of the chemo I have received this month)

Other good news... I don't have a tail anymore! Translation: I'm not hooked to an IV pole 24/7, since they're not keeping me on fluids, pain medication, or anything else right now. I'm still receiving an antibiotic through my central line, but it usually goes in when I'm sleeping, so I don't even notice it. In addition, I'm not required to be on the monitors at night (or during the day) anymore. Mommy doesn't have to jump and run over each time my heart rate or respiration goes a little too high, or my pulseox goes a little too low.

I also have acquired a new bike that has a big handle on the back for Mommy to use so that she can push me around. I look pretty adorable in my kitty cat mask, pretty nightgown, and my pink slippers on my primary-colored bike carrying Dora with bunny ears on the back. I'm getting quite good at ringing the bell when I pass people in the lobby.

I've been playing in the playroom more and more the past few days, and I have made lots of new friends there. Little Ava is a 15-month old baby who has AML; I've been working on being polite and sharing with her. Speaking of which, I don't want to be polite. That's what I keep telling Mommy and Daddy when we go out in public. When people smile at me and say "Hi," I get really embarrassed and hide my face or squeal/growl/scream at them. Daddy told me that this is not "polite," and that I should at least smile if I don't want to talk. Well, we had a fight about me not wanting to smile or be polite to anyone the other day... yes, it was a kicking and screaming fight (I did the kicking and screaming, not Daddy). I've also met Felicia, a little 18-month old girl who is bald like me. Jonathan, Nathan, and Critter are some of the boys I've met, but I don't really want to play with them too much (they ARE boys, afterall). All of these kids and their families sure need prayers. They are battling so many health problems, let alone emotional and financial issues that go along with them. Some of them are from faraway places, too, so they have to be away from their families, quit their jobs, and make many other sacrifices to get the care that we are lucky enough to have at Cincinnati Children's Hospital. When you're praying for me, please keep all of the other kids here in your thoughts, too.

Anyway, the bottom line is that we don't know when we'll be able to go home. Originally, the doctors said we would be here a couple of weeks, then we heard that it would be more like a month. I'm mending quite quickly, though. Mommy and Daddy are a little worried that now that I'm going to the playroom and out on walks more often with my ANC so low that I'll pick up a virus, which would keep us here even longer. Just try to keep me in my room, though...


A new disease...

I haven't eaten in four days, but this is my belly! I've gone from 29.5 lbs. on
Monday morning to 35.2 lbs. on Friday evening.

Looking back, I guess they DID warn us!

It's sure been a busy week, so I'll try to recap the highlights and lowlights...

Let's see... Mommy left off writing about Monday night. I have found out that they draw blood shortly after getting platelets and other blood products to test it and make sure they "stick." Apparently, when they checked my blood after the platelets, they had only gone up to 6,000 (from 4,000). They gave me more platelets, and I went up to 15,000, but my hemoglobin went down, even though they had given me blood. My nose was also continuing to bleed (likely a result of low platelets), which made me vomit.

By Tuesday night, Dr. Pope came in to explain what she thought was going on. She had reason to believe that I had developed something called Veno-Occlusive Disease (VOD) as a result of the Thioguanine (chemo) I had been taking for the last ten days or so. She gave a brief description to Mommy and Daddy (sludging problem in the liver, where it's not doing its job, and everything is backing up into the abdomen), but said that she wanted me to get an ultrasound of my liver to be sure. This would explain why my body was not holding on to the platelets and blood I had been getting, too, since my liver is chewing them up. She said that the ultrasound would show if there is a reversal of flow in the portal vein, which is a primary characteristic of VOD. Dr. Pope also told us that they would start me on Lasix (a diuretic) and Actigall (a bile acid that decreases the amount of cholesterol produced by the liver and absorbed by the intestines). Key point: the VOD is reversible!

Here's a blurb Mommy found on the Internet about VOD:
"Veno-occlusive disease is a potentially serious liver problem caused by high doses of particular chemotherapy. In patients with VOD, the blood vessels that carry blood through the liver become swollen and obstructed. This impairs the liver's ability to remove toxins, drugs and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness of the liver. The kidneys may retain excess water and salt, causing fluid to build up in the body and swelling of the legs, arms and abdomen to occur."

I won't go into detail about the ultrasound, except to say that it was a long, horrible experience that I don't want to repeat. We actually ended up having two different technicians trying to "capture the essence" of my liver on film before the real radiologist came in and found the reversal of flow that Dr. Pope mentioned.

That night lasted forever! I got a new anti-nausea medication called Ativan, as well as morphine for the pain. Everyone thought I'd be "out cold" in a few minutes after taking them, but I showed them! Nurse Kelly gave me some packed red blood cells, which were like a slow charge on my battery for the next four hours. During that time, I also vomited four times and had a bloody nose. I didn't go to sleep until they unhooked me around 3am. Needless to say, Daddy and I were pretty tired Wednesday morning.

My platelet and hemoglobin counts have gone up (yay!) and down (boo!) all week. For example, from March 30 until April 3, these have been my platelet counts:
You'll notice that they are now taking my blood for CBCs twice a day, plus another renal/electrolytes panel during the day, resulting in about four pages of lab results each day. When I get below 10K or am bleeding, their plan is to give me more platelets. My hemoglobin keeps going down, too, but not as dramatically. Anytime I get below 8, they do a transfusion.

Mommy stayed with me last night, and Daddy went to work. These nice ladies came by right as I went to sleep to take an x-ray of my chest, to make sure I wasn't getting pneumonia. Overnight, the resident started me on another antibiotic (Vancomycin), because she thought there was fluid in my upper right lung. Because my ever-expanding belly was making me so uncomfortable and the morphine was making me itch, Dr. Wagner switched my pain medication to something called Dilaudid. It did the trick, and I drifted off to sleep pretty quickly.

Unfortunately, Mommy got a little scared overnight with the necessity of the chest x-ray combined with the alarms going off throughout the night. My PulseOx (oxygen saturation of my blood) kept dipping during the night, so they put this cannula thing in my nose and turned on some oxygen. I didn't like it, but it kept that alarm from going off. In addition, my heart rate persisted in spiking, indicating that I was tachycardic. The third alarm that continued to sound was the one that showed my respiratory rate. I was having difficulty breathing, because my abdomen was putting so much pressure on my lungs and crunching everything.

That brings me to today. Let's just say that I slept virtually all day. I woke occasionally for 10-15 minutes, and I sat up a few times, but other than that I slept. Mommy and Daddy are hoping that my body is healing itself, but a major part of it is the Dilaudid that's making me sleepy. When it wears off, I'm so uncomfortable with the pressure in my belly that I cannot stand it. Mommy and Daddy think it's better that I'm not in pain, since the pain medication will not hurt me.

At one point I woke up to hear Mommy freaking out to Daddy on the phone. Apparently, she had done some research on the Internet (a "no-no" in this place), and saw some of the statistics and research for VOD. The problem was that most of the research out there is for bone marrow transplant patients who develop VOD, which is different than my VOD (my liver was perfectly healthy before this whole thing).

During rounds, the doctors talked for a long time. They said that they weren't sure if I had really developed pneumonia (the x-ray wasn't clear enough because my belly was in the way), so Dr. Pope switched the orders so that I would get Azithromycin instead of the Vancomycin. Evidently, Vancomycin is harder on the liver, and we don't need that! They also planned to give me Vitamin K (through my central line) and another diuretic (called Aldactone) which will hopefully work together with the Lasix to help me "pee off" some of the fluid build up. The Lasix hasn't been working, so we're praying for some relief with the combination and increase in Lasix. The good news of the day is that my bilirubin level (1.1) actually went down from yesterday (1.8). Dr. Wagner was saying that this level would probably go a lot higher at its peak, and then it would start going down again.

After rounds, Dr. Pope and Dr. Wagner came by and clarified some things, allaying both Mommy's and Daddy's fears a bit. Dr. Absalon also stopped in to touch base, and Mommy and Daddy were quite appreciative. He told us that kids who develop VOD on our floor (not on the BMT side) are inpatient for about a month. So, maybe we'll get to go home for Mommy's birthday!

I did have a lot of visitors today... Nanna B., Aunt Renee, Nana, and Uncle John all came to see me at different times. I wasn't the best hostess, but I think they understand.

Tonight I'm getting both platelets and blood, and I'm sleeping right now. Isn't it cool how I can somehow write in my sleep?! I'm looking forward to a good day tomorrow... a day filled with fluids going away, a lower weight, a venturing out of the room, and my body on the mend. Please pray for me and all of the other kids here on A5S who are battling with struggles similar to my own!