10.31.2008

Day 10 - Halloween


Daddy and Mommy were still gone when I woke up this morning, but at least Nana was with me. She had her coffee, and I had my waffle with peanut butter. The morning was the same old drill... rocking and watching Charlotte's Web. By the time Mommy got to the hospital, Nana looked pretty exhausted. Worrying about me must have zapped her energy.
We tried to take a ride but ended up walking back and forth in our own hallway. The doctors (lots of them) were in the way doing their rounds, and Mommy didn't want to miss rounds at our door, so Mommy pushed me in a wheelchair while Nana pushed my IV pole. I was just happy to be out of our small room.
Nothing really of interest during rounds, except that they think I might have some kind of virus. I guess it would be a big deal if I do have one, though. I can't fight off infections like everyone else. The things the doctors mentioned that they are concerned about:
1. my eyes (maybe conjunctivitis, that's why they've been giving me horrible drops since last night),
2. the rash on my hands (still aren't sure what's going on with this, but they say it's faded),
3. the spot on my back where the first BMA was taken (is not healing, and is bugging me a lot), 4. my bowels (went from constipation to explosive diarrhea).
The doctors decided to do a "culture" with one of my stool samples, and we will not be able to be out of our room until the results come back (24-48 hours). Ugh. Good thing they waited to order the culture until after the Halloween party.
Nana left, Nanna B. and Daddy showed up, and we got ready for the party. Donned in my Tinkerbell costume, I was ready to show those other kids how to get down. Well... not exactly. I was actually just ready to fall asleep right before we left the room, so I was a grump to everyone I saw. Good thing I was wearing a mask; otherwise, all of those people who thought I was so cute would have seen the scowl on my face.
I took a short nap after Nanna B. and Daddy left, and Dr. Hummel must've stopped by to talk with Mommy while I was sleeping. I overheard her paraphrasing what he said to someone on the phone: "concerned about this funkiness she's feeling... not sure if it's a virus... really aggressive with treatments during induction... when kids respond well, we send them home before the three weeks... might be a month or longer before you go home... just want to prepare you... stay in room if it's a virus or there's a fever..."
I'm going to go stir crazy!
I ate a decent dinner and didn't want to play, but at least I let Mommy watch Tinkerbell with me twice. I did start watching Charlotte's Web one more time, but then I suddenly asked Mommy to put me to bed around 7pm. She looked at me like I was crazy, but then she did it. Around 9:30, I asked her to turn on my music, and I passed out for the night listening to my lullaby CD.

10.30.2008

Day 9

It started out as a good day. When Mommy mentioned the Belgian waffles that 'Nise had made and frozen for me, I decided that I wanted one with peanut butter, and I wanted them like YESTERDAY! The adults in the parent lounge cracked up when they saw me and heard how bossy I was to Mommy, who was quickly attempting to heat up the waffle in a microwave that didn't work well. Gobbling up 3/4 of it back in our room, my tummy felt full.

Mommy and Daddy put me through a terrible bath in the "bathtub room" again. I showed them, though. While the doctors were doing rounds right outside the bathtub room, I screamed my head off so that they couldn't hear each other talk. We got lots of looks when we walked out. I enjoy my baths at home, but it's just different here (in more ways than one).

Nanna B. was waiting in our room when we returned, but lots of other nurses were there, too. Uh, oh... I could feel that something bad was going to happen. When they moved my crib out, laid me on my back in it, and Mommy, Daddy, and Nanna B. put masks on, I knew I was right.

I'm going to leave out the details of the nurses changing my PICC line dressing, but let me just say that it was by far the most traumatic event of my life so far. Nanna B., Mommy, and Daddy were all visibly shaken by the experience, and I sobbed for a good hour afterward. I sure hope Daddy can talk with the parent advisory council to make sure I don't have to go through that pain again.

Right before nap time, our room transfer finally went through. You see, they've been doing construction work right next to our room. The workers banged on the walls and floor on and off throughout the evening, really picked up at midnight, stopped for a little while, started up again at 7am, and kept going throughout the morning. Dr. Wood, who is vocally challenged (as she puts it), had difficulty projecting her voice during rounds so that all of us could hear her. The music of buzzsaws during my PICC line dressing change was quite calming, too, by the way.

Mommy and the nurses packed up all of our things (we have TONS), and Nana rocked me until we were ready to relocate to room 44. I was wiped out after all of the activity, so I took a little rest in my crib. While I was sleeping, though, Mommy left, and Great Nana and Great Papa came to visit.

Apparently, Mommy and Daddy were going to take Lily to a movie (Beverly Hills Chihuahua) and then spend the night with her at our house. How unfair is that?! I want to go to our house and sleep in my own bed! From what Nana says, Lily's misses Mommy and Daddy and needs to spend something called "quality time" with them. But I need them!

They pain team (what a tough-sounding group) put me on a PCA pain pump. This machine gives me a low dose of morphine constantly; but then if I have too much pain, someone can push a button for me, and I will get a little more. They can push it once every ten minutes if they need to. Mommy and Daddy had talked to Dr. Pope yesterday, and she said that having a low-dose morphine drip might improve the way I feel by avoiding the extreme highs and lows that the single doses of morphine had been giving me.

Don't read the next part if you're eating right now...

Shortly after they started me on the pain pump, I ate dinner (a pretty good one actually), but then I threw it up. I handled it well, with the exception of being mad at my pacifier getting messy. Once Nana got me cleaned up, I had what they referred to as "explosive diarrhea" two times. Poor Nana! She went through lots of wipes.

Nana requested that they put me on a monitor, because she was a little worried about how I was acting since being put on the pain pump. I guess they were supposed to hook me up to a monitor when they started the pump, but for some reason, they didn't do it. Worried that my heart rate kept dipping so much, they took me off the low, steady dose of morphine in the middle of the night.

10.29.2008

Day 8


Boy, I'm getting tired of this! What happened to the 12-13 hours of uninterrupted sleep I used to get at home, as well as the two or three hour nap?! Another rough morning... I tossed and turned, moaning frequently throughout the night. Complaining of back and leg pain, I told Mommy that I indeed wanted some medicine for the pain.

I didn't want to eat much at all today, and I didn't feel like playing. My belly made me super uncomfortable, and it was growing more and more. I heard one of the doctors call it a "Buddah belly." Mommy started rubbing it for luck after she said that.

Poppa came for a visit in the morning before he went to work, then Daddy, Mommy, and I went to the OT/PT therapy area with a nice woman (and OT) named Jill (she's our neighbor Kami's sister). She tried her best to get me to play... she had a cool swing, big cushy blocks, bikes, and a huge ball... but I wasn't interested. I just wanted to ride in the alligator and take a walk.

We returned to the room for rounds, and Mommy and Daddy found out that the 5% they had mentioned the night before meant that there were 5% blasts (leukemia cells) in my bone marrow. This should have made me very happy, because we were down from 70% a week ago. It sure wasn't making me feel any better to have less of these blasts; in fact, I felt like I needed some more "blasts" to give me energy.

The rest of the afternoon I was in a lot of pain, between my belly and my legs, and Nanna B. came in to spend some time with me. I let her rock me for a while, and she took a little walk with us.

It went downhill quickly after that. I forced Mommy to watch Charlotte's Web some more - it is my comfort movie, after all, and I was in a lot of pain. Dr. Pope and Dr. Hummel both stopped in and said how pale I looked. They were pretty concerned about it, and Dr. Hummel decided to call for another CBC. ARGH, I really need my blood, and they keep taking it away!

We also got some disheartening news from the doctors. What they thought was 5% was really somewhere between 7% and 25%. I'm confused by this, and so are Mommy and Daddy. Dr. Pope said 15%, which bummed Mommy out, then when Dr. Hummel came in, he said 7%. Mommy questioned him on this, and he said, "Oh, that's what Jan told you?" He then went into a big long explanation about the test that they do to count the blasts, putting radiation on them, yada yada yada, and how the counts of the blasts are given in ranges. They thought mine were somewhere between 11 and 25, and he thought that's why Dr. Pope told us 15. For some reason, he kept saying 7, though. Mommy wants Daddy to hear them explain it at rounds tomorrow (since he was at work tonight when the doctors came around), so he's planning on asking. I guess the bottom line is that since they are not 5% or below, I'll need to have another bone marrow test next Tuesday. I'm already dreading that anesthesia stuff.

'Nise came to visit again tonight, and she brought lots of DVDs and homemade waffles. I surprised Mommy by choosing a Diego one. I guess I need to throw her a bone every once in a while, huh? Mommy's hoping the waffles will perk up my appetite in the morning. Though I was still extremely uncomfortable, I let 'Nise rock me, and 'Nise and Mommy noticed a strange rash on the palms of my hands. The doctor on call (Stacey) said they would all watch it over night. What is going on with my body?

Another doctor, Dr. George (I remember him from the ER), came in right before I fell asleep. He looked at me closely, tapped my belly with his fingers, told Mommy that the blood tests came back fine, and said that I might be getting a fever (this could be the cause of the weird looking palms - he said it wasn't a rash, but instead blood vessels). I was just ready to go to sleep, so I'm glad he left. Maybe we'll figure out what's going on tomorrow...

10.28.2008

Day 7


I woke up in pain around 4:45 this morning. Mommy asked the nurse to hook me up with some of that morphine stuff, and I requested that she rock me. After I few minutes, I told her that I wanted to lie in my bed, and I commanded her to lie in hers.

A couple of hours later, I was being rushed to get my diaper changed, because we were heading down to OR25 again. Daddy got really mad when the doctor, Dr. Weiss, told him that they wouldn't be able to change my PICC line dressing while I was under anesthesia. Seeing as that was the worst experience I've had since being at Children's Hospital, he and Mommy wanted it to be done while I was sleeping. Rightfully so, if you ask me. Daddy says that he's not dropping it.
As soon as Mommy carried me into the OR, I began fussing. I remembered this place, but not in a positive way! This is where my head went fuzzy the last time. Mommy cuddled me, and I quickly started feeling sleepy...

I woke up in a different room, and by the time Mommy and Daddy got there, I was sitting up and mad. I kept screaming "NO!", but then I realized I was hungry. I started asking for a bar, then milk. They gave me the milk but told me I'd have to wait for the bar. Again with the waiting for food. I'm telling you, this delayed gratification thing stinks.

I screamed when we entered our room (I'm not so much liking it these days), I screamed when Mommy gave me my choice of three bars (and I threw the one I chose on the ground), I screamed when they tried to check my vitals, and I screamed when Mommy and Daddy didn't understand how and where I wanted to sit. Mommy looked pretty haggard, and Daddy did, too. Finally, we got to go out for a walk after rounds, and I wore my cute kitty cat mask. Originally, I refused, but if I didn't wear it, Daddy told me I couldn't go for a walk or ride in the alligator.

Once other people saw me in my mask, though, I changed my mind about it. I was stylin'! They kept saying how cute I looked and asking me what a cat says. I even showed off by pretending I was giving myself a bath like a kitty. When we eventually came back to the room with Nana and Papa, I didn't want to take off the mask (or go back to the room, for that matter).
The rest of the day was a Charlotte's Web movie fest... I watched it a gazillion times! I was feeling so awful and uncomfortable after the procedures and chemo this morning, and the morphine they were giving me for pain, that I didn't even want to play. Daddy and the nurse put some antibiotic cream on my back, and they're giving me another oral antibiotic (Zosyn) besides the Bactrim (a prophylactic antibiotic they've been giving me so I don't get pneumonia). The doctor confirmed that the spot on my back from last week's procedures was infected, and my body cannot fight off any infections on its own right now. The Zosyn should help.

My tummy hurt immensely tonight, since many of the medicines I have been taking cause constipation. I kept wanting to move back and forth between my crib and my Dora couch on the floor. Once Mommy thought I was comfy, I'd scream at her that I wanted to move to the other place. Every time she tried to change the TV from Charlotte's Web to something else, I yelled at her that I wanted to watch it. She was no match for me! I did happen to let Nanna B. rock me for a little while tonight, and that calmed me down a bit.
We did hear some good news from the doctors today. The preliminary results from the bone marrow test came back, and Dr. Hummel told us that we were "sitting around" five percent. He said they didn't have exact numbers, but they should have more precise results by the afternoon tomorrow. Dr. Pope reiterated the fact that this was good news, and Mommy asked where we were last week when I came to the hospital. She said not to quote her, and she hoped she wasn't mixing us up with another patient, but she thought we were around 70 percent. WOW! Those horrible chemicals they're putting in my body must be doing some good.

Who would've thought that to get better I'd have to feel so miserable...

10.27.2008

Day 6


I can't believe they let me sleep almost the whole night through, but the wet bed was proof of it. My back itched, and I let Mommy know about my discomfort. She and Daddy seemed a little concerned when they looked at the spot I had indicated. They said the spots in my skin where they took some of my bone marrow and spinal fluid looked infected. All I know is that it really itched!

Shortly after being upright, my tummy rumbled. I told Mommy I wanted PANCAKES (over and over, actually). Unfortunately, it's not like home here... when you want something, you don't get it right away. Foodwise, you need to wait 45 minutes after talking to someone on that big skin-colored phone to get it. This is frustrating to Mommy and Daddy, but moreso, to me!

Poppa arrived for a visit before my pancakes (and French toast sticks), and he was able to see me attack that food with fervor. I ended up with syrup everywhere, but Mommy and Daddy were just happy I was eating. Dr. Wood popped in to let us know that they were at the door for rounds, which she knew I loved.

We stepped into the hallway and listened to the doctors talk about me again. I really do like that part of the day: 1.) it gets me out of the room (I'm getting a little claustrophobic); 2.) they're talking about me (I enjoy hearing my name over and over); 3.) I get lots of smiles and winks from the doctors and nurses; and 4.) Daddy and Mommy get to ask questions about my treatment and get them answered by lots of smart people.

I forgot to mention a few days ago that I found out I am really popular (whatever that means) here at the hospital! All of the nurses are requesting to be on my team. One of them even kept sneaking in when she wasn't assigned to my room to visit with me (you can see the pic of me and Allie above). I guess I'm a pretty good patient...

I'm scheduled for my second Bone Marrow Aspiration (BMA) and lumbar puncture tomorrow morning. I'll receive Methotrexate by intrathecal injection so that the chemo goes directly into my spinal fluid. I wonder if I'll get really mad again; I didn't like the way my head felt after that procedure the last time.

Anyway, the morning went pretty well. Mommy's cousin Stephanie stopped by to visit, bringing a cool princess sticker book and fun twisty crayons, but I felt a little tired (I think it was the morphine). I tried to lie down for a little while, but after some time of just playing around in my crib, Mommy got me up. I ate some snacks, played at my Sponge Bob table, drank some milk, and walked around the room a little (yay!). I could tell that the blood was making me feel better... I had so much more energy.

A little later, I took a good, long nap (of course that's when the physical therapist came by to assess me). I woke up to Ms. Michelle from my school, her pastor, and Mommy looking at me. This is not a fun way to wake up, so unfortunately for them, I was a grump. I loved all of the cards from my friends at school and the puzzle and Colorwonder kit from Ms. Michelle.

Once they left, though, we took a walk to get some milk (I’ve been looking forward to picking it out on my own, as well as getting out of the room) and Daddy returned from his errand-running. He’d needed to go to work for a little while, and he stopped by our house to get a few things, one of which was my favorite food… peanut butter. When I saw the JIF jar, I started chanting “Pea butter, pea butter, pea butter… spoon!”

I saw ‘Nise’s face through the door’s window shortly after that, and she stayed to play and feed me “French fries.” They’re really not French fries, but instead chicken fingers. I now know this… but Mommy still thinks she’s tricking me into eating chicken, so I play along. I actually ate nine of them, so I guess I was pretty hungry. ‘Nise always finds a way to get me to eat.

‘Nise talked Mommy and Daddy into going out for dinner, while she played with me and read to me. When they returned, I actually told them to “Go bye-bye.” Mommy seemed a little shocked, and ‘Nise just smiled. I sure do love her!

It was off to bed with me then, since I had a big morning in store…

10.26.2008

Day 5

It started out as a rough day again, when they kept me up from 3am-4am doing the same things they did the night before. I was pretty grumpy until Mommy's friend Kate from work came in bearing toys and yummy treats to bring me out of my funk. I didn't even want to go out to rounds once I got distracted by the toy basket, and that it is usually one of my favorite parts of the day. Daddy and Kate went out to get another huge basket full of comfort and entertainment items for Mommy and Daddy, while I licked a lollipop and used my new markers in a coloring book. The thoughtfulness of Mommy's friends from the Intermediate and Middle School amazes me!

I got worn out after just a few minutes of playing with the new toys, so Mommy put me down for a nap. I woke up really hungry and ate three chicken nuggets (quickly), as well as almost a full bag of Sun Chips. This was the most I had eaten in a few days.

I got my second blood transfusion today (I'm O+, by the way). I think it will help me have more energy... I hope so, anyway. I fell asleep around 4pm again, right after Nana came in and before Lily and Nanna B. arrived. That morphine stuff sure makes me tired, but I'm glad they're managing my pain a little.

I woke up from my nap roaring mad, because Mommy and Daddy were gone, and Nanna B. and Nana were with me. Why did they leave me? Nana carried me down to the cafeteria, while Nanna B. pushed my IV pole. Mommy, Daddy, and Lily were getting dinner, so I guess that's why they abandoned me. Lily was acting a little loopy, and Mommy and Daddy kept attributing it to the fact that she didn't have a nap. I know I don't act right without a nap either.

After dinner, we were a sight to behold... Mommy carrying me (because I wouldn't let anyone else do it) and holding a weeping and heartbroken Lily by the right hand, while Nana pushed the IV pole, Nanna B. carried all of the "stuff," and Daddy held Lily's other hand. Lily ended up sobbing and having a total meltdown when she had to leave with Nana, and Mommy and Daddy cried in the alligator (elevator) on the way up to the room. Man, this is really hard...

10.25.2008

Day 4

It was a particularly long early morning. They came in to get my vitals starting at about 2:30 this morning, and they proceeded to: give me my anti-nausea medicine (took 15+ minutes); give me morphine (at Mommy's request - took 15+ minutes); change my diaper (twice); and take "labs" (my blood). The whole process ended up lasting about an hour, but luckily, Mommy was up with me to hold my hand and sing to me. Why do they keep needing to change my diaper so much? At home (that place I really miss!), I could go twelve or more hours without a diaper change during the night.

At rounds, the doctors decided to cut my IV fluids in half and to switch my antacid meds from Zantac (twice a day) to Prilosec (once a day). Mommy smiled when they mentioned cutting down my fluids, since she wouldn't have to hurt my legs by changing my diaper as often.

I felt kind of punky all morning, but after a bath (which I hated) and a change into my pretty Dora princess nightgown, I sat up in my bed with my tray table and Cheerios to eat a little. Mommy's friend Cathy (the one with the funny accent) came in before lunch to visit, but I just wanted to lay in my crib. My Great Aunt Sharon was there when I woke up, and Mommy, Cathy, and I (in a stroller thingy) took a walk around the hospital shortly thereafter. It was really fun, but I didn't want to go back in that small room. I was really getting claustrophobic!

We had more fun things waiting for us, though, when we got back in the room. Daddy's friends from work sent a big Vermont teddy bear with six huge balloons tied to his arm, and Mommy's "library friends" sent a really cool bag of goodies for Lily, Mommy, and me. I can't wait to eat some of that chocolate, and anyone who knows me knows how much I adore books. I need to make sure that Mommy thanks everybody for me...

When we got back, though, Aunt Renee was there... it was so nice to see her again. I heard her say that Lily was going to go to a birthday party with Mason and Avery and then spend the night at her house. I wish I could have gone... I LOVE birthday cake, you know. We got a little bad news about my ANC count for the day. It was below 500 (it was 310), so if we wanted to go out of the room, I would have to wear a mask. Mommy told me this, and I screamed an emphatic, "NO!"

Cathy got me McDonald's for dinner. Boy, it's nice to say what you want and have someone run to get it! I think they're all just happy when I eat, though. I thought I wanted a chocolate shake, but when Mommy offered it, I turned her down. Poor Mommy... she's really struggling with my mood swings. 'Nise stopped in right before bedtime, bringing me some more jammies that she altered so that they snap down the right side, and swiping some that I had here so that she can sew them. She sure loves me, and I love her right back!

Mommy tucked me in, and Mommy, Cathy, and 'Nise gave me hugs and kisses. I fell asleep listening to their chatter...

10.24.2008

Day 3


What a rude awakening! I woke up Mommy around 2:45 am, telling her about my tummy and my legs hurting. After she changed my diaper, I puked all over my bed. It was really scary for me, because I hadn't ever vomited before. The doctor had told Mommy and Daddy that they might start seeing some of the side effects of the chemo today, and I hoped there wasn't more of this to come. Following the cleanup of my body and bed, the nurse gave me a small dose of morphine, and I slept really well until around 8am.

The first face I saw at wake-up time was my Nanna B's. I sure love her! She can always make me laugh. She stayed for a little while before her meeting and said she would come back before lunchtime. Daddy, Mommy, and I went out into the hallway for rounds this morning (nothing new in the reports from the doctors), and I told those doctors that I was going to eat French toast for breakfast. I wasn't clutching a chocolate donut in my hand like I was yesterday, but they still thought I was adorable.

I didn't feel like doing very much all day. I really wanted to cuddle, and I didn't have a desire to play. My legs were hurting again, so the nurse gave me a dose of morphine before my nap. I slept for almost three hours (the best nap I've had since being here), and when I woke up, I got to work with Jessica, the speech therapist. She assessed my comprehension and verbal skills, and though I got tired and sandbagged the test, I still came out above average for a toddler my age. If I had been at the top of my game (and not angry at being poked), I'm sure I would've ranked as gifted.

The scariest part of the day came next when I got another dose of chemo (PEG, or asparaginase), but this one was shot directly into my thighs. Daddy and Mommy had been warned a few days ago that this injection had many risks, the most serious of which was anaphylaxis. They looked a little nervous as Mommy held my hands, Daddy held my legs, and the nurses jabbed my thighs (numbed by EMLA). I cried and used my newly-invented words, but it was over pretty quickly. By this point, I had had enough of being poked and messed with, and I kind of shut down for the night, curling up on my Dora couch to watch Baby Einstein. I hoped that tomorrow would be an easier day...


10.23.2008

Day 2

We all got a terrific night of sleep last night! I even slept through some of my vital checks. Poppa showed up to visit before going to work, which got a big smile out of me. Right before "rounds" in the morning, our neighbor Karen dropped in to leave a tub and bag of goodies for Daddy, Mommy, and me. That was so nice; we have great neighbors!

We stepped outside in the hallway to listen as all the doctors and nurses talked about me during their rounds. I found out that they got some good news from the BMA they did on Tuesday. I have a genetic mutation called "TEL-AML," which means my 12th and 21st chromosome are reversed. Having a mutation sounds pretty cool to me, and Dr. Pope explained that other kids with leukemia who have this same thing have a 95% chance of survival without event. My chances have gone from 85% to 95% in just a couple of days!

Daddy and Mommy called some people to let them know the good news, and Papa stopped in for a visit in the morning. Brian, my new music therapist, visited for a short amount of time. I really love music, and he was terrific! He took requests from me, Mommy, and Daddy, and played his guitar and sang with us. Though I was kind of shy, I told Mommy how much I liked him after he left. I can't wait until he comes back!

A couple of Mommy's friends from work (Meg and Julie) came in right after lunch, and they brought me Care Bears balloons and yummy Penn Station fries, as well as a very generous gift for Mommy and Daddy from her Board Office friends (what nice people!). Those French fries were the best thing I have eaten since being in this place (I secretly think that's why I had such a good nap). More of Mommy's friends from Loveland (Kyle and Mary Ellen) came by when I woke up, and they brought me even more presents. With all of these fun gifts, I'm starting to wonder when the birthday cake is going to come...

'Nise came to visit again, and she brought more good things. I especially liked the BIG card with Tinkerbell, Dora, and the angel that watches over me as I sleep, as well as the card from Chewy (her dog).

The next part is a little graphic, so if you have a weak tummy, you might not want to read any further...

They had to change the dressing on my PICC line tonight, and anyone who has seen me since I've been in the hospital knows that I don't like my PICC line messed with. Daddy had to hold down my legs, Mommy was rubbing my head, and two nurses unwrapped, peeled off an extraordinary amount of tape, and cleaned my PICC site. Though it only took me one sentence to tell what went on, it really lasted FOREVER, and it was by far the worst experience I have had yet in the hospital. While crying a river of tears, I even developed some new words for the pain I was experiencing. Instead of "oww" or "ouchy," like I would usually say, I said, "goo goo" and "gaga." Mommy's eyes were full of water by the end, and 'Nise actually had to walk away.

One light in the whole dark experience was that I got to wear the new Tinkerbell jammies that 'Nise altered for me so that they have snaps down the right side and they fit over my PICC line. She sure is taking care of me (and my parents)! I even let 'Nise rock me before bed, and I went down without a fight...

10.22.2008

Day 1


I woke up pretty happy today, since I knew Lily would be coming to spend part of the day with me. Poppa stopped in for a little while, and he brought a blow-up mattress for Daddy and Mommy to sleep on (they were very excited about this for some reason).

Lily and Nana showed up mid-morning, and we went to the play room together. We made some crafts together, played in the kitchen, played with the balls, and Lily made a suncatcher thing with something like aquadots in a fancy machine. Mommy kept making me try to share with Lily, which is normal. After playing for a little while, Mommy made us go back to the room to eat. Lily and I didn't really eat very much; I had some tater tots, and Lily had chocolate milk.

We took a nap... me in my crib, and Lily on that fancy blow-up mattress. Nana stayed with us while Mommy ran home for a few minutes to get some things. When I woke up, I got really mad because that mean nurse was fooling around with the hugging thing again, and Mommy wasn't here. I started hitting Nana and screaming. I don't understand why I can't control my temper right now, but I think it has something to do with the steroids they have me on. I do remember the doctor telling Mommy and Daddy that I would have mood swings with the Dexamethasone, but I like swings, and this swing wasn't so fun.

When Lily woke up, though, she threw up her chocolate milk all over my floor! Mommy thought it was just nerves about me being in the hospital, but she ended up throwing up two more times that day. Nana took her home to our house (lucky girl!) so that she could sleep in her own bed. I sure miss our house! I keep telling Mommy that I want to go to her house, but she just isn't listening.

Mommy and Daddy gave me a bath, which I didn't really like, and I threw a hitting fit on the way back. I opened a bag of fun things from Nancy (this really nice lady Mommy works with at the library) and Ms. Kelly (a parent volunteer that works with Mommy). I hugged the chipmunk Webkinz for most of the evening, and I absolutely LOVED the princess fruit snacks. As a matter of fact, I had three bags of them, and totally melted down when Daddy and Mommy wouldn't give me a fourth bag. I decided I would show them... I didn't eat anything else the rest of the night, and I yelled at them on and off until right before bedtime.

After cuddling and rocking with Mommy for a little while (and Mommy accidentally squirting my dose of Zantac in my eye), both Mommy and Daddy tucked me in. I looked at them and said, "Sorry, Mommy... sorry, Daddy." I wasn't really trying to be so mean all day! Those darn steroids were making me do it. Daddy and Mommy must have accepted my apology, because they got tears in their eyes and said, "There's no reason for you to be sorry, Becca Boo." I love it when they call me that...


10.21.2008

Day 0

Our day started bright and swirly this morning! Mommy thought she would wake up as she normally does in the five o'clock hour so that she could get a shower, but she was wrong. She woke up at 6:30, and they were talking about coming to get me for the procedures at 6:45. When she and Daddy came over to my bed, they noticed that there were a couple of pools of fluid from my IV on the sheet. The nurse (who has the same first name as Nana) freaked out and started blaming me, saying that I moved around too much and pulled out the IV.

When she left the room to get help, Mommy told Daddy that she had done something similar around two that morning (I don't remember, because I was really sleepy). She told Daddy that she had paged the nurse's station when my IV was beeping and saying "occlusion downstream." The nurse came in, punched a couple of buttons, and was ready to leave, when Mommy said something to her. The nurse jumped and told her that she was worried that the IV wasn't flowing properly, and that she'd have to get the team over to poke me again. Mommy asked her to try to flush it again (she knows how much I hate to get poked), and she held my hand, sang to me, and counted with me while the nurse did what she needed to do. The nurse liked Mommy's singing and counting, too (smart lady), and thanked Mommy for helping to calm me.

Daddy and Mommy were a little worried about the competence of this nurse, and as they were talking, two other nurses came in - the charge nurse and another one. They were great! They fixed me right up and assured Mommy and Daddy that my procedure could still be done. Whew... we all wanted to move on with my treatment so that we could go home!

Mommy and I got to ride in a wheelchair again when we went to OR25, Mommy and Daddy answered lots of questions (again), then we went into a room where lots of people were wearing paper gowns and masks. Mommy held me for a few minutes in that room, and then everything went foggy until I woke up in the recovery room. Mommy was stroking my hand, Daddy was rubbing my leg, and two other nurses were looking at me as my eyes popped open. My head felt really funny, and I was having trouble holding it up. On the way back to our room, I started to get really angry and frustrated, and I began hitting Mommy. I knew she didn't do anything wrong, but I didn't know how to react to all of the new feelings I was experiencing.

It was nice to see Nana and Papa when we got back to the room. I saw Papa's eyes get pretty red, and I heard Daddy tell them both that the procedures went really well and we would hopefully hear something later in the day. We rocked and played for a few minutes, then the nurse rubbed some cream on my arms where she had drawn smiley faces the night before. She put tape over the cream, and my arms began to tingle a little.

Mommy and I took another trip in the wheelchair (man, that's the way to ride!) to go get my PICC line put in my arm. Everyone kept saying how it would be much better with a PICC line, and all I knew was that if I could get rid of the IV in my hand, I would be happy. Mommy and Daddy had to wear funny hats and masks, as well as lead gowns. Everyone kept telling me what a great job I was doing, while Mommy, Daddy, and the nice lady from Child Life tried to distract me from what they were doing to my arm. I got a cute bunny (and a kitty for Lily), and I picked the color purple for the bandage that wrapped around my PICC line.

After lunch and a nap, Lily and Nana came to visit. I had sure missed my big sister! She brought me some pictures that she colored by herself, as well as a big poster from my friends at Kids R Kids. Mommy and Daddy thought it was funny when Lily started limping like me. She said her leg hurt, but when Daddy told her he would give her a surprise if she could run over and get something for him within five seconds, she did it with two seconds to spare. I don't blame her for developing the limp, though, I have been getting lots of attention...

We played in the Child Life Activity Center together until dinner, and then Nanna B. and 'Nise came by around dinner time. I loved the nightgown, jammies, and socks that 'Nise brought, and I couldn't wait to wear them. The nurse gave Mommy three medicines for me to take: Zantac, Allopurinol, and Dexamethasone. She said I would be getting these two times a day. I didn't mind the pink stuff, but the other two tasted nasty.

Poppa stopped in to visit and drop off a blow-up mattress for Mommy and Daddy to sleep on (they were SO thankful). I started fading fast after all of the activity, though, and I went to bed around 8pm that night.

10.20.2008

Day -1

Well, I woke up to more poking and "hugging" many times throughout the night, so I didn't have the restful sleep that I normally have at home. Two nurses, Kelly and Sarah, took care of checking my vitals that first night. I whined and screamed every time they took my blood pressure, and they had to untangle me from my IV each time they came in.

Daddy, Mommy, and I met with that new Dr. Absalon oncologist (the attending) that Dr. Hummel had mentioned in the ER downstairs. At the same time, Dr. Pope (the fellow) and Dr. Wood (the resident) were involved in our discussions. Dr. Absalon told Mommy and Daddy that we were going to slow things down a bit, since we had a little luxury of time. Rather than doing my procedure around two or three o'clock that afternoon and trying to keep me from eating all day, they would do what they called "drawing some labs" that would go through a special test that morning, and by the evening, we would all know if I indeed had leukemia, and which type it was (ALL or AML). If you'll remember, we were rooting for the ALL. The BMA and LP plus the first dose of chemo would be scheduled for the first thing in the morning (so I could eat all day Monday!).

Daddy and Mommy (and Nanna B. and Poppa, who stopped in that morning) were a little confused as to this change in course, but after further discussion, they decided it would be best for me (and my belly). I was so excited about the chocolate donuts that morning, and everyone said my color had perked up since the blood transfusion last night. They checked my vitals all morning again, drew the "labs" that they had mentioned (OWWEEE!), and I met a lot of people. One that I really liked was Brandi; she works in Child Life, and her job is to play with kids all day and make the awful things not-so-awful. The people Daddy and Mommy talked with included Casi (a social worker who would help them to deal with the finances of my disease) and Tina (the care coordinator who said she would give Mommy and Daddy a calendar of what would happen when, as well as lots of "stuff" to read about leukemia).

Before lunch, Nana came by the hospital, and she and Mommy gave me a bath in the bathtub room (yes, there is a special room for it, since we only have a shower in our room). I didn't really enjoy the bath, because I couldn't get my left paddle wet, I didn't have my normal bath toys, and I just was not comfy. There was a funny part to it, though. As Mommy took me out of the tub to wrap me in towels, Nana reached over to drain the tub. Guess what? She fell in! Yes, she slipped on the water and gracefully flipped around so that her hiney went in the remaining water. After Mommy showed some concern, they both started laughing when they realized that Nana wasn't hurt (well, I guess her pride was). The rest of the day, I proceeded to tell everyone (including Nana), "Nana fell in tub." I didn't laugh about it, though... I just said it in a matter of fact way.

After my nap, we got some good news. Dr. Absalon and Dr. Pope came in to tell us that I had the ALL B-cell type of leukemia, which is what we wanted me to have if I was going to have leukemia. Yay! We were supposed to celebrate, and though the doctors looked really excited, Mommy and Daddy didn't seem to know how to react. I overheard Daddy say later, "Our daughter has cancer... it's surreal."

Later in the day, I took a trip to the Child Life Activity Center (which wasn't really very far). We had to wipe our hands with yucky-smelling wipes when we went in, but at least I got to play in the little kitchen and cook some rice in the microwave. I also enjoyed playing with the My Little Pony tea set, and the nice ladies there let me take some toys back to my room. When I came back to the room for a diaper change, 'Nise was there! She brought me all of my favorite things, too! How fun is that? After visiting for a few minutes, we went back to the play room for a little while, but in the midst of playing hard, I decided I was exhausted.

We got back to the room, and Mommy and Daddy helped me brush my teeth and put me to bed. I was ready to nod off, but then the mean nurses kept coming in to mess with me. They checked my vitals (yet again) and gave me some things called platelets through my IV line. They said that I needed these to get strong right before the surgery in the morning. If you ask me, they looked like orange juice. Unfortunately, I couldn't get comfortable, and as Daddy said, I "ran laps" around my bed until around 11pm. They did let me sleep a little more during the overnight hours, though...

10.19.2008

Urgent Care, ER, Hem/Onc Ward... OH MY!

Well, as soon as I woke up, that crazy Mommy was trying to get me to walk again. Why couldn't she just let me take my time waking up? I saw her concerned looks and overheard her talking to Daddy about how "weird" it was that I wasn't wanting to walk. She and Daddy called Nanna B. to get her opinion (which they do whenever they need medical advice, since she used to be a nurse).

I learned that the "plan" was going to be 1). Mommy and I going to the Mason Children's Hospital Urgent Care, 2). Lily going to Kings Island with Daddy, and 3). possibly Mommy and I meeting Daddy and Lily at Kings Island later in the day. This sounded like a good plan to me. I liked going to the doctor, and I was glad that Mommy and Daddy wanted to find out what was wrong with me. I also loved Kings Island, so it was a win-win. Mommy and Daddy knew that it wouldn't be fun for Lily to sit in an urgent care for an extended (or even short) period of time, so Daddy made the decision to not go into work.

Around 11:30 that morning, we all headed out, blowing kisses from our carseats. After finally finding the Urgent Care (and screaming "Doctor, doctor, where ARE you?" for a long time while we were lost), we checked in with the receptionist at the front desk and waited in the waiting room for about three minutes. The nurse called us back, asked me to stand on a scale with stickers, and took us into a room where she asked Mommy lots of questions. The nurse then moved me from Mommy's lap to the other side of the room. Mommy asked me to walk to her, and I limped pretty quickly, since I didn't know that nurse person. She typed some information into her computer and told us that "the doctor" would be right with us.

A few minutes later "the doctor" came in. She was different than any of the doctors I had seen before (she was a "she"), but I liked her, because she asked me if I wanted a popsicle after I walked a short distance to her. Mommy held the red popsicle halfway down the hall, and "the doctor" put me down on the floor next to the scale where I had been weighed a few minutes earlier. Boy did I take off for that popsicle!

Another doctor peeked her head out of the file she was looking through, and agreed with "the doctor" (my doctor) that I was limping on what they said was my left leg. They picked me up, placed me on my back on the examination table, and began moving my legs in crazy circles. I heard them say that the left one was definitely "stiffer" than the right, and that they wanted to do x-rays of my hips.

Mommy had to wear a really heavy apron-thing, but she was allowed to stand next to me and sing while the nice x-ray lady took pictures of my hips and legs. I sure like it when Mommy sings, but she says she can't understand why.

We went back into that room with the big table, and Mommy tried to keep me busy and quiet. After a pretty long time, "the doctor" came back in to tell us that the picture of my right hip looked a little different than the one of my left one. She told us that they were going to take some "B-L-O-O-D" (that's how she put it) to find out a little about what was going on. She also said that sometimes after a viral infection people get what is called "septic arthritis" in their joints, and she thought that might have been what was making me limp. I had been sick with bronchitis and a touch of pneumonia about ten days before this...

Mommy and I went to lunch at McDonald's while we waited for the blood test results to come back. They told us it would take about an hour, and we came back after 45 minutes. As soon as we walked into the waiting room, the receptionist waved us back and "the doctor" and the nice nurse came in and closed the door. They looked really serious, and they told Mommy that they were going to be something called "blunt" because "that's what they would want in this situation."

As Mommy began squeezing me more tightly, "the doctor" explained that there were three markers that they were looking at in the blood test: 1). red blood cells, 2). white blood cells, and 3). platelets. She told Mommy that none of the levels looked good (they were all low), and she gave some numbers, but I don't know all of mine yet, so I didn't pay attention. At this point, the nurse came over to put her hand on Mommy's shoulder, and "the doctor" told Mommy that these levels can indicate something called "Leukemia."

I didn't know what it was, but judging by Mommy's reaction, it didn't seem like something I wanted. She started getting some tears in her eyes, and "the doctor" and nurse did, too. She went on to tell about another test that they did on my blood called a "smear," and that they look for something called "blasts" to indicate that it could be leukemia. She said they saw some blasts. Mommy began to cry a little harder then, and the doctor and nurse told her that she needed to take me to Children's Hospital as soon as she could.

The next hour or so was kind of a blur... Mommy and I drove home so that she could pack our bags and meet Daddy, Lily, and Nana. Nana would take Lily, and Daddy, Mommy, and I were to go to the hospital and meet Nanna B. there. I saw some tears, and I gave Lily hugs and kisses (even though she didn't want to at first, because Daddy had told her that I was sick, and she didn't want to catch it). I didn't realize at the time that this would be the last time I would see my home for two or three weeks...

Mommy held my hand on the drive to the hospital, which was nice, and I fell asleep for a few minutes. She carried me into the emergency room around 4:30pm (where Nanna B. was waiting for us - YAY - I sure love her), and this is where I met lots of people who kept doing the same things over and over. They asked Daddy and Mommy tons of questions about their family history, my health over the past two years of my life (if I had been sick a lot, if I bruised easily, if I had been hospitalized, if I had any ongoing health problems...), and why they were there with me then. Couldn't they have just talked to the urgent care where we just were? These people also kept listening to my heart and belly with stethoscopes, pressing on my belly, taking my temperature, looking in my mouth and ears, and putting this awful thing called a "blood pressure cuff" on my arm. Its job was to squeeze my arm or leg so tight that I couldn't stand it anymore. They kept telling me it was just "hugging" my arm/leg, but I sure hated it! I decided to let them know how much I despised it by crying each time. Mommy and Daddy were great about singing and counting so that it would distract me.

A couple of mean ladies (who looked nice, but weren't really, because of what they did) came in talking really sweetly to me, bringing toys and popsicles. This was great, except then they took some of my blood again and put an IV in my hand while Mommy and Daddy hugged and sang to me. Besides sticking me with a needle that actually stayed in my hand, they also put a big pad-like thing in the palm of my hand and taped everything together. Nothing like having a big paddle for a hand! I seem to remember this from when I was in the NIC unit at Bethesda North about two years ago. Anyway, I didn't like it at all (BIG understatement), but everyone told me that I did really well. It did earn me another red popsicle and some chocolate ice cream, but I'm not so sure it was worth the pain.

More doctors came in, some of them were called "oncologists" and "hematologists," and they asked the same questions and did the same things to me. The one oncologist told us that he was going to admit us soon, and he tried to explain a little more about leukemia to Daddy, Mommy, and Uncle Jonathan (he switched places with Nanna B. after a little while). He said we were hoping for the ALL type of leukemia, rather than the AML type. Apparently, the ALL type is the "good type" to have, because the treatment is more than 85% effective.

He gave some more details, but with only a half hour nap, I got a little tired of listening. I did hear the oncologist tell us that Dr. Absalon would be our oncologist while we were in the hospital the first week or so, and that his specialty is leukemia. I think this was supposed to make Mommy and Daddy feel better. The phrase "blood transfusion" was also used, and I was a little curious as to what this was and when it was going to happen. They sure had been talking about my blood a lot today.

The oncologist also said that I was going to have two procedures in the morning. One procedure was called a Bone Marrow Aspiration (BMA), and the other was a Lumbar Puncture (LP) or spinal tap which would take fluid from my spinal cord to see if there was the presence of leukemia. They would give me my first dose of chemotherapy while they were doing the spinal tap, since they have found success with this. The whole thing was sounding really scary to me and Mommy and Daddy, and I started to realize that this was really happening.

After a much longer wait, during which I continued to lay on Mommy's chest, they told us that my crib was ready on the fifth floor. Mommy and I got to take a fast ride on a wheelchair, we got up to my crib (which looked like a shiny, metal monkey cage), but they needed to listen, poke me, and "hug" my arm some more. They put some button stickers on my chest and tummy, and then hooked the wires to a machine that flashed numbers and beeped a lot. Another tether was the glowing red Band-Aid-like thing they put on my toe. How could they expect me to get away from all of the pain that was coming with such short leashes?

The final straw of the night was when they did that blood transfusion that the oncologist had mentioned down in the ER. I didn't like it at all! The blood felt and looked a lot different than the IV fluids, and everyone was confused as to why I was hating it so much. They kept inspecting the needle in my vein, but I really didn't like them messing with it (and I let them know).

Mommy kept rocking me, singing to me (did I mention how much I like that?), and counting with me through all of the rigamarole. I kept telling Daddy and her that I wanted to go to "Mommy's house," McDonald's, Kings Island... anywhere but there! They told me that they knew that and that they would rather be in those places, too. So why were we in this awful place?!

Around 10pm, I finally got to sleep in my cage. I think I did a great job of staying awake, considering I only had 1/6 of the nap that I normally take and I was up two and half hours longer than normal! During the night, though, they didn't let me sleep very well. They kept listening to my heart and belly, taking my temperature, and using that darn "hugging" thing.

10.18.2008

Fun Day at Nanna B. and Poppa's

It was a fun day for Lily, Mommy, and me at Nanna B. and Poppa's farm. After a hike up the hill to collect items for our nature collage poster, we worked on gluing down the seeds, flowers, bark, rocks, etc. Right before dinner, I started limping.

My mommy said it was almost like I was "cruising" again, since I was not wanting to place weight on my legs. She wondered if maybe I was constipated (whatever that means), and Poppa thought I might have some kind of ear infection that was taking away my balance. Mommy kept trying to get me to walk to her without holding on to anything, but I didn't want to. I kept holding my arms up and saying, "I carry Mommy."

After a yummy dinner and the drive home, Mommy made sure to show Daddy how I was limping, trying to make me walk some more without her assistance. Silly mommy got so excited when I pooped in my diaper that night, and I overheard her say that she wanted to see how I was walking in the morning. What's up with these grownups being so focused on bowel movements?!