11.29.2008

Days 10 & 11 (Consolidation)


Friday -

Another rough night during which I spiked fevers, got the chills, felt achy, had diarrhea, and cried every time my diaper was changed. My body felt just awful. You know that feeling you get when you have the flu? Well, that's how I felt.

During rounds the doctors decided that they needed to test for a few viruses including the flu. They said that my body is doing a great job of trying to defend itself (my ANC was 3,780, platelets were 236,000, and white blood cells at 6.2), but nothing bacterial or fungal is showing up in the blood cultures, stool cultures, or on the CT scan. I'm pretty well covered with all of the antibiotics I'm on, too (Vancomycin, Zosyn, Gentamicin, and now Ambisome). The nurse stuck two Q-tips up my nose to swab for the flu - a quite unpleasant experience - but I handled it very well.

Mommy's cousin Maria and Nana came for a visit, but I didn't feel like socializing at all. I was pretty darn miserable all day. I alternated between shivering and burning up, and every diaper Mommy changed was filled with diarrhea (she actually had to change her clothes twice because my diaper leaked out on her - haha).


Saturday -

My counts were even higher (ANC = 5,720, platelets = 283,000, and white blood cells = 8.8), so my body was really kicking into high gear to fight off this bug. The problem, though, is that I still felt like total garbage. It was a repeat of the night before, except my highest temperature spike happened around 4am, and it was 39.8 degrees Celsius (103.6 Fahrenheit). I wasn't even allowed to go out for rounds this morning, because they had me in isolation until the cultures come back. All of the nurses, doctors, and PCAs that came in had to wear yellow gowns, masks, and gloves. I didn't like it one bit, so I screamed every time that someone entered the room. Nurse Anna summarized what was said at rounds, since I didn't want Mommy to go out either.

She said that they were going to treat me with Tamiflu, even though the flu cultures hadn't come back yet. Dr. Hummel felt that the symptoms I was exhibiting were classic for the flu. Even if I didn't have the flu, giving me Tamiflu wouldn't hurt me. If I did have it, starting the medicine today would give us another day's head start on the treatment.

Mommy's friend Kate visited again today. Mommy really seems to like it when Kate visits, and she always brings yummy things for Mommy and me. Today, she brought some tasty Quakes cheddar-flavored mini rice cakes. I hadn't eaten in three days, so they looked pretty good to me. Once I had the first one, I quickly wanted four more, and I grinned as I ate them. Unfortunately, I saw them again (and so did Mommy, Kate, and Dr. Hummel). I was impressed with how he pitched in to help clean me up.

We moved to a new room today! Tons of kids have left the floor this week, being discharged because they are at the end of induction, they are feeling better, or they are out on passes. Our room makes a lot of noise, and Daddy keeps saying it's a man in the wall shaking the pipes. I don't know if it's true, but that's what it sounds like, and every time someone nearby flushes a toilet, we hear it. So, when the opportunity to move came up, Mommy snatched it. She had us mostly packed up by the time Kate got here, and Kate became "one chick with a cart." You've heard of two men and a truck? Well, Kate moved us with a cart and a wagon, and she even unpacked things for us. What a good friend she is... Mommy's pretty lucky.

I like the new room. It's a little bigger, it's a lot quieter, and the view from the window is nice. Though I like it, I'm still ready to go home, so I hope we're not in it for too long.

Since I had such a rough day again, the doctors prescribed morphine for me, and Mommy had them give it to me around 5pm. I had been in pain with stomach cramps and aches, and just the slightest touch (even from Mommy) made me scream. Most of the afternoon I begged Mommy to rock me over and over. The morphine did wonders! I actually asked to play (and did - see above pic), and it really took the edge off my pain. I might tell Mommy and Daddy I want it more often...

11.27.2008

Day 9 (Consolidation) - AKA Thanksgiving

I woke up with a cool washcloth on my head, and boy was I mad! Mommy told me I had a fever still, and I needed to take the purple yummy medicine to feel better. I didn't want to! For the first time ever, I refused to open my mouth and take it. Daddy and Mommy had to hold my face still and force the medicine in my mouth. Needless to say, I was a little peeved.

I didn't feel like eating, drinking, or doing much of anything. I just wanted to be rocked or left alone, and I fought to watch Charlotte's Web over and over all morning. Yelling, throwing things, hitting, and banging my head against my crib were the ways that I showed Mommy and Daddy how mad I was. I asked Mommy for milk, but she acted like she didn't hear me, and she didn't ever get me any.

Finally, around 11:30am, nurse Anna gave me a funny-tasting sippy cup of orange juice. I drank a little, but I was suspicious. For some reason, Mommy had ignored me all morning when I asked for milk, but then suddenly she let me have juice after about ten days of not allowing me to drink it. When I didn't finish the cup, Daddy gave me a different sippy cup of bug juice, but I was still wary of his motives, so I drank very little. Then Mommy and Daddy started getting mean, saying that if I didn't drink the juice, they would have to give me "medicine." Did they think I was that dumb?! I had seen them put the juice into syringes, so I knew it wasn't medicine.

Well, they struggled but got three syringes of yucky juice down my throat. At 1pm, we left for the radiology department to get my CT scan. We had to wait for a long time in that room with all of the animals painted on the walls and the big machine with a hole in the middle, and I eventually fell asleep. I woke up to Mommy lifting me onto a big long sheet-covered table, and an anesthesiologist messing with my PICC line. When I started to feel really dopey, they moved me up farther on the table, and then I felt something tight on my arm and a sharp pain in my hand. I tried to scream, but my voice sounded really warped, like I was under water. I kept screaming and crying when they did the same thing to my other hand and my foot.

I opened my eyes for a few seconds and noticed the looks of stunned disbelief on Mommy's and Daddy's faces. The anesthesiologist then asked how critical it was for them to do the contrast. I guess the deal was that they had me drink that yucky juice, which had contrast in it, and then they needed to put contrast into the peripheral IV they were trying to put in my hands and foot. He said if it was critical, they would need to put me under general anesthesia and intubate me. The anesthesiologist went to page the resident who was on call, and Daddy started to show his dissatisfaction. I didn't understand most of what he said, but he voiced his concern and said that he wanted to talk with Dr. Hummel (the attending) before we did anything.

It turned out that Dr. Hummel said we needed the contrast, so they were going to put me under and "tube" me. Daddy had some words with the anesthesiologist, but then he and Mommy had to leave so that I could go to sleep (at least that's what they told me). I don't remember anything else until waking up in the PACU with a really sore throat, raspy voice, and coughing.

Once the doctor brought Mommy and Daddy from the PACU waiting room, I was able to rock with Mommy for a little while, and I tried to tell her how horrible I felt. They finally let us go back to our room after a little while. I just wanted to be left alone to watch Charlotte's Web, but since I had diarrhea, Mommy kept changing my diaper. I didn't want to eat, either, although I tried a little warm milk (I told Daddy I wanted it that way).

I still had a fever, and I didn't want to take the Tylenol they needed to give me. Yes, they eventually got it in, but it wasn't pretty. The nurse also brought in this weird blanket for my bed. It had hoses on the end that hooked into a big machine, and water ran through it. She called it a "cooling blanket." It was pretty cold, and I ended up with waffle prints on my legs during the night, so I wasn't really digging the new blanket so much. My fever spiked several times over night, and I wound up having chills, too.

I have to say this is the worst Thanksgiving I have ever had. As a matter of fact, I kept hearing Mommy and Daddy say how much it "sucked," which I think means it was bad for them, too.

Mommy is a little worried that we only wrote depressing things, so she wanted me to mention some items for which we are thankful. Here goes... we are grateful for:
  • technology
  • poppies
  • E. B. White
  • Baby Einstein DVDs
  • pacifiers
  • high ANCs and platelets
  • loving, supportive, and generous family members, friends, and neighbors
  • the highly-skilled and caring team of doctors, nurses, and support staff here at Children's Hospital

11.26.2008

Day 6-8 (Consolidation)

It's been like a roller coaster here the last few days, so I haven't given Mommy much time to write for me.

I spiked a fever overnight Monday morning and they started me on another antibiotic called Gentamicin, so I was in solitary confinement (in my room) again on Monday. Boy, was I busy, though... I did lots of art projects (mixed media - paint, crayons, colored pencils, glue and noodles, buttons, etc.), built with blocks, worked puzzles, and played with the physical therapist and speech therapist. I also had fun dancing to some Laurie Berkner songs with Mommy (see the video below).

On Tuesday morning I rode to the clinic in my new green wagon (thanks, LaName!); I started fussing as soon as I saw where we were going, though. Aunt Renee was with us for a little while, but she didn't come into the OR with me. Deciding to stay in my wagon, I figured they couldn't hurt me too much. Little did I know that they would get me to go to sleep with that white stuff in my PICC line again. I suppose someone caught my head from flopping, because I luckily didn't have a bump on it when I woke up.

I got a new blanket (pink this time) over my PICC line, but my arm was pretty sore as I came out of the anesthesia. I heard the recovery room nurses say something about sending the BioPatch to be cultured. That is the doughnut-shaped circle that goes around my PICC line that has time release antimicrobial stuff in it. I guess there was some dried blood and greenish (ewwww!) discharge on it. They were also concerned about how tight the Coban wrap was around my PICC line site, because the skin under the Tegaderm (the huge plastic sticky sheet that seals in all of the important parts of my PICC line) was really red and irritated.

I'm guessing my lumbar puncture went well. All I know is that my back was a little sore, and I kept wanting to rub it. Unfortunately, the site was under my nightgown and diaper, so it was out of my reach. When we returned to the room, I tried to eat my Cheerios with milk, but several nurses were thwarting my best efforts at eating. Daddy asked them to go away for a little while so that I could eat (I hadn't eaten since the night before, and it was almost 11am), and they did.

Since we hadn't heard where my counts were and if the isolation orders had been lifted, we stayed in the room most of the day. I did more arts and crafts (I'm becoming quite the artiste), and I played with lots of different toys. The little tattoos of fishies and ladybugs that Mommy put on my fingernails were really cool, too! Beth, the music therapist intern, came by in the afternoon, and I really enjoyed her singing. I pretended to make soup when she gave me a pot with lid and spoon to bang, and singing brown bear, brown bear, what do you see? with her pictures was super fun. Nanna B. came to spend the night with me so that Mommy and Daddy could stay at our house with Lily. I'm kind of jealous (have I mentioned how much I miss our home?!), but I guess Lily misses Mommy and Daddy and our house, too; and I really like spending time with my Nanna B. I am named after her, you know...

No fever overnight, so the doctors pulled my Gentamicin and Fluconazole. Dr. Hummel told Mommy that he could only remove (or DC) one antibiotic each 24 hours, but if all went well, he would take away another one tomorrow. I also found out that we would get a four-hour "pass" to leave the hospital on Thanksgiving. Yippeee! Mommy and Nanna B. looked so excited, and they told me that I would get to go to Nanna B. and Poppa's to see Lily, Stanley, Charlie, Clyde, Mason, Avery, Aunt Renee, and Uncle Jon. It sounded good to me. I just had to make sure I didn't get a fever or have any hiccups...

Well, the hiccups happened today. Lily and I played dress up and then we went down to physical therapy with Gretchen and occupational therapy with Jill for about an hour. We had a great time... I pushed a doll baby in a stroller, colored on the chalkboard, climbed up and down some stairs, and even rode a bike. Lily enjoyed shooting hoops and swinging, while knocking down a tower of soft blocks. Both Lily and I got cranky as therapy ended, but it was nap time after all. We headed back to the room, and Lily left with Nanna B. as I was yelling at Mommy about something or another ( I can't remember why right now... there were so many things I was mad about today).

Mommy tried to get me down for a nap, but I didn't want to sleep. I didn't want to eat either, and I surely didn't want to have anyone take my vitals. I said I wanted to play in the play room, but when we went there, I kept telling Mommy, "NO!" She made lots of side comments that I needed a nap, but I knew something else was going on. I think the word many people used to describe me today was "irritable." Hmmm... whatever! I just felt terrible, and I didn't want anyone to touch me. I was getting a fever all day, so I screamed at Mommy, hit her, and I wouldn't eat or sleep. I even turned down birthday cake! When the nurse told Mommy that I had a fever, Mommy's eyes teared up. I think she realized that we weren't going to get to leave the hospital for Thanksgiving, and we surely weren't going to be discharged from the hospital this weekend, as she had hoped.

They took some blood to be cultured and gave me a dose of Tylenol around 7pm. The doctor also started me on AmBisome, rather than putting me back on Gentamicin and/or Fluconazole. The Tylenol didn't really work, so they gave me another (bigger) dose at 11:30pm. Dr. Baker came in and said they would be doing another CT scan in the morning. I guess I'll need some sleep...

video

11.23.2008

Days 4 & 5 (Consolidation)






It's been an up and down couple of days, and I haven't felt like writing. Yesterday morning, first thing, Mommy and Daddy got scary news from our resident, Dr. Dan. He said something like, "Oh, so you've heard the results from the EKG and echo cardiogram?" Mommy replied that they hadn't, and he told them that I had a hole in my heart but not to freak out. Needless to say, Mommy freaked out, and Daddy wasn't totally calm either. They paged the doctor to get things cleared up.

Dr. Absalon came in and explained that I have a Patent Foramen Ovale (PFO), which means that the valve between the left and right atria in my heart has not closed up yet. It is normally open in infants, and then it closes up on its own eventually. Dr. Absalon told us that it is not a concern to him, and it won't affect my treatment in any way. He said that, in fact, his wife had hers closed up when she was 30 years old. Later in the day, we actually found out that up to 30% of American adults have this, too, and they never know it. Of course, I wonder how the doctors know 30% have it if those American adults don't even know they have it. While it's not of consequence right now, the cardiologist said that before I have my own children I will need to have it checked to make sure the valve has closed.

The good news Saturday was that we were still on track to be discharged from the hospital on Tuesday after my central line is placed. Since my counts were good (platelets were at 150,000 and ANC was at 830), we also were told that we could have a "day pass" that would allow us four hours away from the hospital. Mommy and Daddy were so excited, but they didn't want to go home. They felt that I wouldn't want to come back to the hospital (which I'm sure is true), so instead, they decided on Nanna B. and Poppa's house. Unfortunately, their heat was out and Nanna B. was having tooth pain, so they decided we would go Sunday instead. Bummer... I really wanted to get out of here.

Early Sunday morning, I ended up with a fever (the first since we've been in the hospital). The doctor told Mommy and Daddy that we wouldn't be leaving Tuesday, there would be no day pass on Sunday, and they would not be putting in my central line on Tuesday. Mommy and Daddy were pretty crushed. They decided to do some blood cultures and a stool culture, and now we just need to wait for the results. My ANC was 940, and my platelets were at 124,000, so the numbers weren't too bad.

I've had some leg pain over the past couple of days, so Dr. Absalon started me on a very small dose of Oxycodone. The pain isn't slowing me down, though. I have been dancing to Laurie Berkner songs, walking a little, cooking in the playroom kitchen, and doing lots of art projects.


11.21.2008

Day 3 (Consolidation)







Another fine day! I woke up in a great mood after a good night's sleep, and I wanted to get moving. Mommy and I took a walk to pick out cereal and milk, and we sat at my SpongeBob table together eating Fruit Loops. At rounds, we heard that my ANC was at 580, my platelets were at 172,000, and my hemoglobin was back up to 12.1 after the blood transfusion last night.

I played in the playroom with Nanna B., Laura, and Mommy in the morning, built block towers with Nana and Mommy, showed Jill (my OT) how to take care of my baby doll, and ate dinner and did arts and crafts with Lily. This was definitely my busiest day yet. Again today, I didn't take a nap. Between trying to go pee pee in the hat in the potty (they needed a "clean" urine sample, which I gave them), getting my echocardiogram and EKG done, and having my PICC line unclotted, it was an afternoon filled with activity. Mommy's friend Meg came in to visit, too. She brought me a really nice Dora picture from her daughter Sarah and brownies, as well as yummy (well, that's what Mommy and Poppa said, anyway) homemade soup.

It was so nice to see Lily tonight! I actually allowed her to hug me when she came in (and I hugged back without squealing), I shared my toys and craft supplies, and I even let her eat my last cupcake. As a matter of fact, I cried when she left. I told Mommy that I wanted to go home and play with Lily. Mommy explained that we would get to go home very soon... Tuesday afternoon, to be exact. I don't really understand the whole concept of time, but she seemed excited and so did Lily, so I showed my enthusiasm by gasping.

11.20.2008

Day 2 (Consolidation)













Wow! Could my day have been any more fabulous?! Those nasty steroids really wore off today, because I actually had energy, wanted to play, and smiled and giggled at everybody. As you can see, I tried on lots of hats, built block towers and knocked them down (that's my favorite part), colored, dressed up in my new princess tiara and earrings, and even went to the playroom. I know this doesn't seem like a lot of activity for the average two year old, but I haven't felt like sitting up for about a month now, and it's been almost 30 days since I've been in the playroom.

As far as eating, I didn't feel like munching as much or as often as I have been, so I'm hoping my belly will shrink a little. It's kind of "out there," right now, which makes it difficult to get comfortable and move around. Building towers with the physical therapist (Gretchen) today forced me to twist and reach a little, which is exercise as far as I'm concerned. I even walked some today, starting with early this morning when I wanted to show Mommy the new nightgown and slippers I was wearing. Daddy and I surprised her by opening the bathroom door... luckily, she wasn't indisposed at the time.

My counts were pretty wacky today. I knew my ANC would go down a little because of the chemo, but it took a nose dive from 2080 yesterday to 400 today. My platelets were down a little (279,000) from yesterday's 334,000, and my hemoglobin tanked, too. Since they thought something was off with the numbers of several indicators, they took more blood to rerun the labs. My hemoglobin was even lower (7.8) with the new results, so they did a transfusion in the late afternoon. Blood always perks me up... maybe that's why I had so much energy in the evening, even though I didn't have a nap. Unfortunately, we didn't ever find out what my ANC was for the second set of labs, so we're looking forward to seeing that number tomorrow.

Mommy met with the geneticists today to answer some questions. They are going to try to figure out why my lactic acid level is so high. Once they get some blood and urine samples, they will analyze them and let us know within a few days if it is a metabolic problem or not. The "boss," Dr. Saul, told Mommy that he didn't think it was, but they would do the tests to rule it out.

Laura and Mommy took so many pictures today that Mommy had trouble deciding which ones to include on today's post. I didn't even want to stop to take a nap or go to bed, and finally around 10pm, after I had a giggling fit, Mommy turned out all the lights to make me go to sleep.

11.19.2008

Day 1 (Consolidation)






















^







Mommy woke me up today at 4am to eat. How cool is that?! I should have known something was up, but I wasn't suspicious. She also slipped me some medicine, and it made me sleep until almost 11am! It was a good thing, because even after I woke up, I still wasn't able to eat for a LONG time. Mommy was told that the appointment for my CT scan got moved back to 2pm (instead of noon), which meant it would be even more minutes during prime eating time when I could not ingest any food or liquids.

Lily, Nana, and Laura came to visit this morning, and while I was excited to see my big sister, I was pretty grumpy about not being able to eat. I did enjoy playing a barnyard bingo game with the speech therapist, and Lily and I both had fun with bubbles (see pic). Lily and Mommy made a kitty cat mask for Lily that matches the one I have (see pic). They also made a tail out of pipe cleaners, but it looked a little pokey taped to Lily's hiney.

The CT scan was surely an experience. We got down to the radiology department promptly at 2pm, but I didn't get into the CT scan room for almost two hours. I was tired, and I actually had a fever (the first I've had since entering the hospital a month ago). The nurse sedated me and I fell asleep for about five minutes. I woke up with seatbelts wrapped around me on a table, and I was in a tunnel that moved around me. Amazingly enough, I didn't freak out. I watched for a little while, then closed my eyes occasionally, remaining quite still. Mommy carried me over to the recovery room after that, and I sucked down two apple juice boxes and four graham crackers.

Daddy, Mommy, the transport lady, and I rode a big alligator back up to the fifth floor. At that point, I made up for the twelve hours during which I couldn't eat. I insisted on McDonald's chicken nuggets, so Mommy made a run (she thought I deserved them after the day I had). Yogurt (Dora, Diego, and Spongebob), cereal, grilled cheese, chocolate, and a cupcake were also on the menu. As I was falling asleep, we got a surprise visit from Vicky (Mommy's friend from work) and Bob (Vicky's husband). They brought some wonderful surprises from Mommy's LECC friends (including a cute little tiger cub stuffed animal and cupcakes - see pics). As I've said before, we sure have some nice friends!

Oh, I almost forgot... Nana is having a blood drive at her work (Sibcy Cline) for me! That's nice. The flyer is above if you're interested.

My counts today: platelets - 334,000; ANC - 2080

11.18.2008

Day 28/0

Me talking to Daddy during therapy ^

I'm an artist!^

Another celebratory cupcake (after all, NO MORE STEROIDS!)^


Nurse Kelly, Nurse Allie, and smiley Becca^

That sleepy medicine (Seroquel) they gave me last night sure worked! Daddy and Mommy were worried that I would wake up at 3am to eat, and I wasn't allowed any food or liquids (called an NPO) after midnight because of my procedures this morning. I actually slept until around 6:45, and I just quietly told Mommy that I wanted yogurt (and Dora cereal, and donuts, and milk...) over and over. I could have been much more demanding; I have a past history of firmly insisting.

Dr. Hummel performed my procedures (BMA and lumbar puncture) this morning, and he told Mommy that everything went fine. Unfortunately for the OR nurses, though, I woke up during my PICC line dressing change and started screaming for Mommy. When Mommy and Daddy rushed in, the nurses didn't look very happy. I promptly reminded everyone in the recovery room of all the foods I wanted to eat.

Once we got back in the room, I made good on my vow to tear through the list of "to eat" foods.
At rounds, Mommy found out that my ANC was at 1290 and my platelets were at 411,000. She told Daddy that the doctors are still concerned about my lactic acid level, though. Normal is 0.7-2.1, and mine is still climbing (it was 7.7 today). Dr. Absalon explained that it is puzzling him, and he is planning to bring in the genetic team. I'm certainly not working out much (I have trouble even standing and walking), and they say I don't have sepsis. Anyway, it looks like I'm going to have a CT scan tomorrow. I don't know what it is, but it sounds pretty cool.

Mommy left for a little while today (I heard she was going to see Aunt LeAnne to get a haircut), so Laura and Daddy took me to one of the therapy rooms. I wasn't happy about it, but they got me standing and walking a little. As you can see in the pics above, I colored on the chalkboard. For my speech therapy today, I sang and danced to Laurie Berkner songs with Daddy. At least I'm stretching my legs a little. Maybe I'll lose this extra poundage soon.

Mommy finally came back, bringing McDonald's chicken nuggets. I was in Heaven! After eating those, and the new chocolate rectangles she surprised me with, I was wiped out. I drifted off to sleep with a full tummy early...

11.17.2008

Day 27 - The last day of steroids!





<--My new friend and nanny Laura fed me lots of Dora Dora yogurt, Diego yogurt, SpongeBob gogurt, Cheerios, and chicken noodle soup today. As I requested new DVDs (about every five or ten minutes), she switched them out for me. She sure has a lot of patience.











-->Mommy and I colored together at my SpongeBob table for about 20 minutes (the longest I've been up and out of my bed in almost a month). I think Lily will love the picture I made for her. I even spelled my name for Mommy to ensure that she hadn't forgotten how to write it.














<--Cheers! We celebrated the last day of steroids with cupcakes. I'm not going to miss the mood swings, sweating, weight gain, and hunger in the least.






-->As you can see, I really enjoyed my cupcake. I licked every last bit of icing from the top and told Mommy to throw the cake part in the garbage.





-->I continued to sit at my SpongeBob table to watch videos on Mommy's computer. Lily and I were singing and playing together in the videos, and my favorite was the one where Daddy is acting like my horsey, and I fell off his back onto a pillow. I kept telling Mommy that I wanted to go to "Mommy's house" as we watched the videos, and I even teared up. I miss our house more than you know!



<--Laura sure is my friend... she drove all the way to McDonald's at my request, just to get me McNuggets. I ate all ten of them then asked for fries.









We got some unexpected good news today! It's a long story (that I don't really know), but I heard that we might be able to go home this weekend rather than the week of Thanksgiving. It had something to do with the bacteria they had found in my blood being sensitive to the Vancomycin I have been on for a while, so they didn't need to start over with a new ten-day regimen. Also, my platelets were up to 322,000 and my ANC was at 1190. Pretty awesome numbers if you ask me!


If all of you could continue to keep me in your prayers, that would be great! Please pray that my counts stay high despite the three different types of chemo that I will get tomorrow (Methotrexate via intrathecal injection, Vincristine through my PICC line, and 6MP orally). We also need to hope for the lumbar puncture and Bone Marrow Aspiration (BMA) to go smoothly, so that I don't experience pain or an infection following the procedures. Tomorrow's going to be a really busy day, but it's a special one. It is Day 28 of the "induction" phase of my treatment, as well as Day 0 of the "consolidation" phase.

11.16.2008

Day 26

I thought I would mix things up a little bit this morning... I decided to wake up at 1:30am, demanding yogurt. After that, I polished off five small bowls of Dora cereal and three of Cinnamon Toast Crunch, while watching Charlotte's Web. The nurse suggested some Benadryl for me, and Mommy (in her groggy state) accepted. Little did Mommy know that it would have the opposite effect of what she had anticipated. Yes, I was up until around 5:30, asking her to change the movie, get me food, change my diaper, and so on during those four hours. I finally got a little rest from 5:30 until 7:00 or so (but Mommy was wide awake by that point).

We had some visitors with familiar faces this morning. John (who used to work with Mommy) and Joan (his wife), as well as Kate, with whom I'm actually beginning to interact. John brought something really nice from the high school faculty, and Kate gave me some super cute hats from a few LIS/LMS teachers. I tell you... Mommy sure works with wonderful and caring people. No wonder she's been in Loveland for almost thirteen years.

Mommy, Kate, and I took a walk to show off one of my new hats, and we saw 'Nise while we were out and about. She brought me some warm, fuzzy hats she had made, as well as a scarf and a few bandannas. I'm going to be the most stylin' bald headed girl around here!

'Nise made a dinnertime run to McDonald's for some chicken nuggets and French fries for me (see pic above). They really hit the spot! I actually inhaled six nuggets at dinner, and I ate the other four right before bed. Among the other great things 'Nise did for me this weekend, she also gave blood, which was no small feat. I heard the story of how she passed out twice that day. Mommy told her not to do it anymore. I think she must need her blood more than me, but it was so nice of her to give it.

Today's counts: ANC - 860; platelets - 252,000

11.15.2008

Day 25


I sure am becoming a night owl! At 3am, the PCA changed my diaper and realized that my bed was wet. I wasn't sure if it was urine or sweat (these steroids really make me sweat), but I was happy to let her change the sheets, blankets, and pillowcases. After that, I stayed up to eat cereal and watch Charlotte's Web until around 6am. I fell asleep, and at 6:20, the IV team came in to draw blood. Well, that's what Mommy told me anyway, since I was sleeping. They honored Mommy's request and came back at 7:30 to "stick me" in my foot to get the blood they needed.

A little later in the morning, my left hand really started hurting. Every time nurse Kimberly put something in (medicines or fluids) through my IV, it burned. I screamed to let her and my mommy know how much it hurt me. The nurse said that the IV in my hand had gone bad, which was typical after a few days, but probably more so because of the antibiotics I was getting.

Dr. Perentesis told us that a new PICC line could be put in, since the other PICC line had been taken out several days prior to this. It would be on my left arm instead of my right arm. Poor 'Nise! She spent so much time modifying all of my nightgowns and jammies for my PICC on the right side! Maybe I'll just wear the outfits inside out or backwards.

Oh, I almost forgot... my ANC was at 1620 today, and my platelets were at 181,000 (normal is 135,000-466,000). My body is doing a great job right now, so let's hope it continues. I would love to go home soon. I keep telling everyone, "I go Mommy's house!"

Mommy, Nana, and the nurses tricked me! They took me on a ride in my wagon, but it was all a setup. We ended up in radiology, and the people inside the room were wearing masks, so I knew something was up. Placing the PICC line this time didn't seem as easy as it was the first time, but that might have been because I knew what was going on. I think I bled a little more this time, too. From what the nurse said that night as she hooked me up to my IV pole, they had gotten a "good line." Even though the whole experience was nerve wracking and traumatic, at least they can now give me medicines and take my blood through the PICC line without me feeling everything. It was SO worth the pain!

11.14.2008

Day 24

video

This was me in September (pre-Lukemia diagnosis). Mommy, Daddy, Laura, and I were watching some videos of Lily and me on the computer this morning, and this was my favorite. I wanted to remind people that I really am cute.

I think something is wrong with my internal clock. I keep waking up at 4 am and going to bed between 5:30 and 6:30 pm. Oh, I really miss the uninterrupted sleep I used to get at home. Hopefully I'll get to have restful nights and naptimes again soon.

Since I had gotten up so early, I didn't want to go out for rounds this morning, but I heard Mommy and Daddy say how much they thought things "sucked" when they came back in. I guess they got some good news... my ANC was up to 1780. WOW! That's the highest it's been since I've known I even had an ANC. The bad news was that they found out we would be in the hospital for a minimum of ten more days. The antibiotic they put me on for the bacteria in my blood needs to run the full course (ten days) via IV. That means we will surely be in here until at least the week of Thanksgiving. One of the nurses said there are always hiccups. I'm wondering what hiccups have to do with any of this...

I liked having Laura in the hospital with me today! She's really nice and funny, and it's great to have another person jumping through hoops every time I change my mind. I think I might go easier on her (and everyone) once I'm finished with these steroids. Only three more days - yippee!

Mommy and Daddy keep telling me about all of the nice things that our friends, neighbors, and relatives are doing for us. You have been so kind, thoughtful, and supportive, and we really appreciate it! Mommy has been terrible about sending thank you notes (she's been kind of busy taking care of me and taking dictation from me for this blog), but she wanted you to know that we are all very thankful for the big and little things you have done to help us out. When we see some of the other patients here without the support systems we have, we feel even more blessed.

Everyone is continuing to ask what we need. You want to know what we need the most? Thoughts and prayers for my counts to continue climbing, the bacterial infection to clear up, and our family to be back together in our own home - that's what we need. Cupcakes would be nice, too... :o)

11.13.2008

Day 23

Up in the four o'clock hour again and eating the hospital out of food... yes, that's me. Mommy and Laura gave me a haircut this morning (see pic to the right). They used something that plugged into the wall and made a loud buzzing sound. I've never gotten a haircut like that before, but Daddy has. I must be good luck, because everyone kept rubbing my head today.

We got some bad news this morning. My blood culture turned up some bacteria. The doctors were worried that my PICC line could be harboring some bacteria, and their plan was to remove it, test it, and give me a different PICC line.

After rounds, though, the resident came in to let Mommy and me know that they weren't going to put another PICC line in yet. They were going to put an IV back in my hand (like when we first entered the hospital) and pull my PICC out. Mommy wasn't very happy about it, and after the removal of the PICC and the insertion of the IV in my hand tonight, I know why.

The paddle I'm wearing on my left hand is supposed to be temporary. I need to wear it until I get another PICC line or my central line. For either of these to happen, though, my bacterial infection needs to be cleared up. So, the bottom line is that we will be in the hospital until at least the end of next week... and Daddy, Mommy, and I were so encouraged by my counts today. My ANC went up to 440 today, and my platelet count was actually in the normal range. Dr. Parentesis reiterated the fact that I have gone into a nice remission, but I still am stuck here.


I sure liked having my new friend Laura at the hospital with Mommy and me today. She's funny and sweet, and I'm teaching her lots about how to interact with me. And she thinks she is a good trainer...


On a side note, I wanted to pass along a special "thank you" to Two Tomatoes Records. They are the company that produces the Laurie Berkner Band CDs and DVDs. Daddy sent an email message to them yesterday, asking for donations of Laurie Berkner music for Children's Hospital (specifically, the Hem/Onc floor). Daddy received an email back that said they would be happy to send some CDs and DVDs, and we're really excited that more kids will be able to get some joy from the band's wonderful music. Thanks, Laurie, Ryan, and Susie (and Corinne)!

11.12.2008

Day 22



Mommy brought me Dora cereal this morning, and I devoured about five small bowls of it. YUM! Again today, I ate a ton. I was a little happier first thing in the morning, but got irritable shortly thereafter. On a good note, the hair fairy had come while I was sleeping, and she brought me a really cool ice cream toy.

Well, since I had Vincristine yesterday, my ANC was down to 390 (bummer), but my platelets were up. The doctor explained why the ANC fluctuates, and then he said that I was in a nice remission. He was happy with my platelets and told me I was doing well.

Mommy and Nanna B. tried to get me to play and to go down to occupational therapy with Jill, but I just wasn't interested. Gretchen, the physical therapist, also attempted to rouse me, but we never were able to connect. Maybe tomorrow...

I fell asleep at 5:30 tonight, since I hadn't taken a nap and had been awake since 4am. I did wake up and see my new nanny's smiling face for about 30 seconds before I drifted off for the rest of the night. I can't wait to meet her tomorrow!

11.11.2008

Day 21

Mommy and I both struggled today. I mean, I guess it's difficult for her to see me with an extra 8+ pounds on me, my stomach all bloated, my legs chubby, and my face looking like it's going to pop. My hair is all over the place (except on my head), so Mommy decided to use the scissors to trim up my hair. I now have a spike in the back and a comb over in the front (so I can still wear my bows). I also got Mommy up at 4am, telling her I wanted to eat. She made/got me grilled cheese, chicken noodle soup, two bowls of Cheerios with milk, some M&Ms, a cookie, and a few other things I've forgotten.

Good news! My ANC was up to 510 this morning. Yippeeeee! If only it would stay up after my chemo (Vincristine) today. You never know... maybe my bone marrow will kick into overdrive.

I was really irritable all day, and screamed "OWWWW!" whenever someone new walked in the room (especially if he/she was wearing a white coat). I didn't want to play or be touched at all, and Mommy thought that maybe my skin was just really sensitive. She met with the "pain doctors" to see if there was something that could make me a little more comfortable. After their assessment, they concluded that I wasn't in pain, but I was really irritable (duh, I could have told them that). They said that many patients on steroids have this irritability, and they decided that they would start me on a medicine called Clonidine. It is typically used to treat people with hypertension, but in lower doses, it can help with irritability. If it works, Mommy says she wants some, too!

Unfortunately, I didn't have any procedures scheduled in the OR, so I had to have my PICC line dressing change in the room while I was awake. Brandi from Child Life and Brian and Beth, the music therapists, came in to help with some distraction. I screamed and cried a lot, but Mommy and Daddy said they thought it went a lot better with the additional distractions in the room. Music surely does make everything better. They had some cool ocean drums and a tongue drum, as well as their guitars. Those drums really sounded like the surf rolling in and out (I know, because I remember going to the beach with Nana and Papa last summer).

Since we aren't likely to be discharged from the hospital this week, my new nanny (Laura) didn't drive here today. She is going to leave early tomorrow morning and come to the hospital to see me. I can't wait to meet her; I think we're going to be good friends.

11.10.2008

Day 20



Ahhh, what a great night of sleep! I think Mommy's going to make sure I get that Benadryl stuff every night.

Unfortunately, I still woke up cranky, and I was hungry and grouchy all day long again. I'd ask you if you want the good news or the bad news first, but since I can't wait for your response, I'll choose.

The good news... my ANC was up to 220 today! This is big, since it was just at zero a few days ago. My platelets have also come up (104,000), but not quite to a normal level yet.

The bad news... I'm probably not going home this week. We are all disappointed. In order to go home, my ANC needs to be above 500 for three or more days. It's not there yet, and I'm getting more Vincristine (chemo) tomorrow, which will most likely make my counts plunge. In addition, the infection on my back is not totally healed, and without these two criteria met, the doctors will not let me leave. While I understand why it's better that I stay, I'm really over this place!

Everyone here has been acting nice and all, but they keep bothering me constantly, and my body feels awful right now. I'm almost 37 lbs., and I'm having trouble getting comfy (see belly pic above; Mommy's a techie, but she still couldn't get it to face the right way and got tired of messing with it). My hair is falling out in clumps, too. What's up with that? They knew it was going to happen (I heard them tell Mommy and Daddy); it must be some type of conspiracy...

11.09.2008

Day 19



12am - I woke up and wanted to go for a walk to make grilled cheese with Daddy (he indulged me)

12:30am-3am - kept Mommy up asking to eat, be rocked, watch Charlotte's Web and "move it, move it", and take a walk

3am - got morphine and slept

6am - woke Mommy up asking to eat, be rocked, watch Charlotte's Web and "move it, move it," and took a walk to kitchen to make soup

6:30-8am - ate a little bit of everything and crabbed before falling back asleep

The rest of the day was more of the same, and it was perhaps my crankiest day yet. Mommy looked pretty worn down, as she could not make me happy no matter how hard she tried. I still didn't want to play today, and the only thing I did was eat. My new weight is 15.3 kg (around 34 lbs.), up from 13.3 kg (about 26 lbs.) when I entered the hospital. Daddy and Mommy are struggling to lift and carry me, and I'm having trouble getting comfortable. It's amazing what an extra five pounds can do! I overheard Mommy and Nana saying that they thought I might burst... man, that would stink!

I'm losing more of my hair, too. It's been collecting on my pillowcases and getting stuck in the crease in my neck. Mommy asked me if I wanted her to cut my hair, but I refused. I want to hang on to it for as long as I can (and so does Mommy). Daddy just buzzed his late last week and wants to cut mine so that we can have matching 'dos.

On a positive note, my ANC was up to 100 today. Yahoo! 400 to go before we can go home. The problem is that I'll be getting Vincristine again Tuesday, so I'm not sure it'll jump fast enough in time for us to go home this week. Mommy asked Dr. Burns what would happen if we had to stay until the end of Day 28, and my count still wasn't up. She said that the chemo and steroids would still stop as scheduled at the end of induction, but then we would need to stay at the hospital until my counts were at acceptable levels before going home and starting the next phase of my treatment. While this would be a pain, it seems doable.

I must say that the highpoint of the day, though, had to be when Mommy's friend Kate brought me purple cupcakes (for which I've had a hankering for days). You can see the before and after pics above. That's really the only time I smiled today. Hopefully, the Benadryl they gave me tonight will help me get some good ZZZZs, and tomorrow will be better.

11.08.2008

Day 18


Okay... I'm tired of all of this! I want grilled cheese! I've had enough, and I'm going to let everyone know. I want grilled cheese! I will grunt and moan at everyone I see, and it's going to be hard to make me smile today. I want grilled cheese! I'm sick of being in this tiny room... I want the door open. I want grilled cheese! I want to go for a walk. I want grilled cheese! I want all of the hospital people to stop listening to my heart and belly, stop "hugging" my arm, and stop giving me medicine.


My ANC was down to 40 today, and I know that it's going the wrong way. My body's really trying to create healthy cells, but they keep giving me chemo. How do they expect my counts to go up when they are killing off everything?


All I wanted to do today was eat and take walks or rides (translation: Mommy or Daddy carried me or pushed me in my fancy little car). I took my eating very seriously, and when I wasn't eating, I was thinking about eating. My clothes are shrinking like crazy (of course, everyone is telling me that I'm getting heavy), and my face is as round as a ball. Mommy is worried that I'm going to burst (that's what I keep hearing her say, anyway). I also keep seeing lots of hair on my pillowcase when I sit up, and some of my hair is getting stuck on my clothes and my PICC line dressing. I'm wearing my bows as long as I can, though...


Let's see... who visited today? I saw Nana for a long time, my mommy's Aunt Mary and Uncle Bill, and 'Nise. I wasn't the best hostess (grunting and scowling, and all), but can you blame me?

11.07.2008

Day 17


I think I ate the hospital right out of food today! As you can see in the pic to the right, I've been thoroughly enjoying my food. Daddy says I'm like Templeton at the fair (the rat in my favorite movie Charlotte's Web).

My ANC was only up to 70 today, but it was zero yesterday, so I guess it's an improvement anyway. In order to go home, though, I need an ANC of around 500. To start my next round of treatment on the 18th, my ANC has to be greater than 1,000. Wow... I've got a long way to go.

The massage therapist visited today, but I didn't want to have anything to do with her. Tell me about how crazy I am later in my life, because I'm just not getting it right now. Mommy volunteered to let the massage therapist demonstrate on her and show how it doesn't hurt, but unfortunately for Mommy, I didn't go for that.

Gretchen, my physical therapist, made some progress with me today. She actually got me down to the therapy room on the fourth floor, and I stood up while playing Play Doh with her. I know it doesn't seem like a big step, but I haven't been wanting to stand or walk much at all since I've been in the hospital. Even though standing for the ten minutes we spent playing made me tired, I had fun, and I think I want to go back to check out some of the other fun toys down there.

Today Mommy got a new calendar from Tina, our care manager. It shows that November 18 is Day 0 of my next phase of treatment, which is also Day 28 of this phase (induction). It looks like I won't take the steroids beginning that day (yahoo... no more mood swings), and I'll be taking something called 6MP or Mercaptopurine each day orally. I'll also get Methotrexate via intrathecal injection during my lumbar puncture (spinal tap) each week in the oncology outpatient clinic at Children's, but I won't have to get the bone marrow aspirations after the 18th. On December 17th, I'll begin the next phase of my treatment (interim maintenance) if my counts are on target.

One more bit of news... Mommy and Daddy have a nanny lined up. I won't be able to go back to school (there are lots of germs and sicknesses floating around), so in-home care is the way to go for now. Laura currently lives in North Carolina, but she'll be coming in to town next Tuesday night. I'm so excited that she is going to join our family, and I can't wait to meet her!

11.06.2008

Day 16


Ugh... my ANC is down to zero today! Zero as in nada, zilch, nothing. How can that happen?! Just when the other numbers were looking good, too. This is the count that needs to be up to around 500 for me to go home, so I'm hoping it jumps over the next few days.

My hemoglobin was at 8.8 this morning, and they say when it gets to 8, I'll need some more blood. I guess I should expect that soon. At least it'll make me feel better.
I had a few visitors this morning: Poppa, Aunt Renee, and Nanna B. They saw my newfound appetite in action. As you can see by my pic (at right), I'm getting a second chin. This is understandable, since I woke up at 5:45 saying "I want frackers (crackers), Mommy!" I ended up eating 1 1/2 PopTarts, 1/2 of a grilled cheese sandwich, a bowl of chicken noodle soup, a pancake with syrup, a powdered donut gem, and a handful of honey roasted peanuts. Impressive, huh?
Nana visited at lunchtime today, so she was able to help me eat more soup and grilled cheese. I sure miss seeing her, but I know she's been super busy taking care of Lily and Baba. Hang in there, Nana!

After a very short nap today, I danced with Mommy and Allie (my favorite nurse) to "Move It, Move It" some more, and I played with Lisa, the speech therapist, for a while. She was amazed that I know all of my letters and colors already, but I've actually known them for a long time. I guess she comes around to play with me so I don't lose some of the things I learned before I came into the hospital. She said she also wants me to learn some new things, too. I have learned some new words: leukemia, blood, white blood cells... I could go on and on.

Dr. Burns and Mommy talked this afternoon, and they decided it might be good to go ahead and give me some blood tonight. I guess I have a flow murmur right now, which is not a big deal, according to the doctor. I'm hoping to have lots of energy tomorrow. I know Mommy wants me to go to the play room with her, and the massage therapist is stopping by, as well. I could go for a massage right now! Maybe my ANC will bounce back a little tomorrow, too...

11.05.2008

Day 15


I woke up early and hungry again, and Mommy couldn't order me the grilled cheese fast enough. As you can tell by my latest pics, I'm developing that "moon face" that everyone's referring to here.

My ANC counts are really down today, and I don't really understand why they jumped so low from yesterday to today. Could be that the chemo is killing all of my cells (yes, even the good ones). Dr. Burns said that things really fluctuate during the induction phase. That's the initial phase of my treatment, A.K.A. the first 28 days that I'm in right now.

GOOD NEWS! I found out that I am a "rapid responder" today! The doctors were saying I am in remission, since my blast count was below the 5% they wanted (and actually closer to 0%). As long as my ANC comes up and the cellulitis on my back heals, I might be able to go home Tuesday or Wednesday next week. Dr. Burns said that I have to be on the antibiotic (Vancomycin) for ten days before I can go home, as well as my counts being up, and my back looking better.

I SO want to go home! Please keep praying and thinking positive thoughts for me. I really believe they are helping. I've had more energy lately, and I've even been smiling and laughing. Daddy, Mommy, and I had fun dancing to "Move It, Move It" from the movie Madagascar today (see pic above), and I even tried to jump again (I haven't done that in a while). I have a little more weight on me now, so it might be some time before I can actually get some air. While the nurses are getting a kick out of my sense of humor, and I'm starting to like some of them, I'm ready to leave this place.

11.04.2008

Day 14 - It's been more than two weeks


Mommy apologized that she didn't feel like writing too much for me today, but I understand... I'm emotionally drained, too.

Everything went fine with my procedure this morning. I only had the bone marrow test; no spinal tap, since the fluid around my spine was clear last week. They also did my PICC line dressing change, thanks to Daddy's persistence. So much better than having it done with four nurses pinning me down...

My steroid appetite has kicked in full force. Mommy's keeping a calorie count sheet for me, and she had to add extra lines at the bottom, since I ate so much. Daddy said I discovered a new food group this morning. Powdered donut gems are the bomb! My new favorite, though, is grilled cheese - I can't get enough!

My Baba (Papa's daddy) had surgery today, and I heard it went well. It had something to do with cleaning out his prostate, but they also found some stones in his bladder and removed them. Good thing... I don't think we're supposed to have stones in our bodies. Papa donated blood for me today, too. That's so nice. I'll be needing lots of it over the next couple of years.

Aunt Renee stopped in this afternoon and brought a yummy dinner for Mommy and Daddy. I let her rock me, and I think she was enjoying it. She wasn't able to stay too long, though, because she had to pick up Avery.

We got "preliminary" good news about the results from my bone marrow test from the morning. The count on my blasts is less than five percent, so we might be able to go home next week. We're not celebrating yet, though, since we jumped the gun last week to celebrate the preliminary results. The cellulitis on my back needs to clear up, and some other counts need to be within certain ranges before we can go home. Please continue praying for me...

11.03.2008

Day 13


Well, I guess I'm becoming a nightowl. I was up and down from about 2am on, moaning, calling for Mommy, and having nurses messing with me. At 6:00 (right after she got back to sleep from my issues during the five o'clock hour), I sat up and told Mommy I wanted French fries. She staved my hunger with yogurt and ordered fries, but by the time they came, I didn't want them. I ate cheese puffs instead... LOTS of cheese puffs.

Lily, Nanna B., and Poppa dropped in this morning. It was so nice to see Lily! She told me about her trick-or-treating and her new kitten at Nanna B's house. Though I wasn't very nice to my big sister, she did a great job of sharing and not fighting back when I tried to start things. Mommy took her to school, and Daddy stayed with me.

Daddy and I saw all of those cheese puffs I had eaten again. They came up while Mommy was gone. Why do I keep throwing up when she is not here at the hospital?

Daddy was super-busy on a crusade this morning. He was working diligently to make sure that my PICC line dressing would be changed while I am under anesthesia for my procedure tomorrow. He and Mommy had implored many people during the last week to make sure we didn't have to go through the trauma of PICC line dressing changes in my room (without anesthesia), but it had gone nowhere until today.

By the time Mommy got back, Daddy had talked to everyone he had seen this morning (our nurse, the PCA, the nurse manager, someone from Child Life, the doctors, the residents, and even housekeeping) about it. A patient/family advocate from family relations stopped in right as Mommy walked in the door, and she sat down to talk with Daddy and Mommy. She got some details, left to talk with the nurse in charge of the OR, and came back with the news that they would change my PICC line dressing tomorrow during my procedure. Daddy is my hero! I was SO dreading Thursday, but now I don't need to.

The nurse also started giving me platelets while Mommy was gone. The doctors this morning said that my levels were getting close to being low. With my bone marrow aspiration scheduled for tomorrow, the new platelets would help me to not bleed too much in the OR.

I went outside today! There is a play deck on the roof of the 4th floor, between the A tower and the B tower. Someone swiped us through, and Daddy, Mommy, and I took a ride over to the play deck. All kinds of play equipment is included on the rooftop, and I was really excited at first. I went down the slide and into the playhouse (see pic above), but then I was done.

'Nise and Mr. Tim came to my room right before bedtime. I hadn't seen Mr. Tim in a long time, so it was nice to lay eyes on him again. They stayed to talk for a little while with Mommy and Daddy, but I wasn't feeling too social. I finally told them I was tired, and I think they got the hint, because they turned out the lights and 'Nise and Mr. Tim left.