12.24.2008

A few more pics & Christmas wishes

Warm Becca

Lily surprised Santa by kissing him on the lips!

Becca - one of the other (Supergirl) reindeer


Dirty laundry?



Do you like my new hair?


I had to go to the hospital yesterday, but I only had to stay a few hours while they gave me IVIG (immunoglobulin through my central line) and checked me out to see how I was doing. We got to go to the day hospital, which was a pretty nice place. The room was bright, we had a fancy flat screen TV, and the chairs were cozier for Mommy and Daddy. It was much better than being in the clinic, so I won't mind going back there for the IVIG once a month. I guess the doctors want to try to boost my immunity through the winter months by doing the IVIG every four weeks. We'll be back at the hospital on Saturday for chemo, but I'd like to enjoy myself during the holidays before feeling yucky again.
Though my counts are down a bit, I'm doing quite well. I'm singing again... a LOT! Before I went into the hospital, I would burst out in song periodically while sitting at the dinner table or just playing, but for the past two months, I haven't really felt like singing. Now, I feel much better, and the songs are coming out again. Mommy has videotaped me, and I'm trying to get her to put it on the blog. Maybe on the next post?
Anyway, Mommy and Daddy wanted me to tell all of you to have a very Merry Christmas! We are so lucky to have such wonderful friends and family, and we hope that you will be able to share the holiday with your loved ones.
We are spending this evening (Christmas Eve) with Nana, Papa, and Baba (Papa's daddy) at our house tonight and opening the presents that Santa brought to Nana and Papa's house. Daddy's cooking a yummy dinner, and I can't wait! Tomorrow morning, we get to open the gifts that Santa will leave at our house, then we are heading to Nanna B. and Papa's house to open more presents with them and Great Nanna, Mason, Avery, Uncle Jon, Aunt Renee, and all of the dogs (Nimmy, Satch, Clyde, and Charlie). I keep telling Mommy that I want to go back to Nanna B's, since I haven't been there in about two months.
I'll update you again soon, but until then, have a holly, jolly Christmas!

12.18.2008

Quick update and a few pics

Clippety clop shoes were the first "toy" that I wanted to play with when I got home
Lily and I by our beautiful Christmas tree

Playing too hard

Couch sliding

Bella Dancerella

Giggling with my Daddy

Antler girls

Lily's telling me that when she gets her own convertible, it'll be pink

I got my central line (yay... everyone keeps saying how nice it will be!) Wednesday after our morning clinic visit, during which they checked me out and gave me chemotherapy. The chemo (Methotrexate and Vincristine) went in through my PICC line, and I will now have to go to the clinic every ten days for chemo. This phase of my treatment will last for 56 days. I've had the two types of chemo before, and unfortunately, Vincristine is the one that makes me lose my hair and have leg pain.

Please pray that I have the strength during the holidays to deal with the negative side effects of these drugs that will kill the cells (both cancerous and non-cancerous) in my body. My counts will go down after getting chemo each time, so if you'd like to visit me, please check with Mommy and Daddy first, and make sure that you are free of any colds/viruses/bugs and wash your hands before coming in the house. They are going to give me Immunoglobulin next Tuesday in the hospital, so that should help boost my immunity a little. Keep your fingers crossed that I only have to stay for four hours or so!

I'll keep you posted on what's happening, but for now, I'm going to play some more...

12.17.2008

Settling in... a work in progress

So I've been home for a glorious week now, but it's been a little bit of an adjustment. Lily guilted Mommy into letting her skip preschool on Monday (December 8) so that she could see me, and Mommy and Laura realized quickly that the next couple of weeks would be filled with reinstating routines and learning to share again (both toys and attention).

It was a busy week, but I was able to stay at my own house for most of it. A home care nurse came on Monday, and Mommy and Laura got used to giving me my medicines and flushing my PICC line. I didn't even fight taking my oral medications much. I sure miss my old routines, but I know it'll take a while until we get back into the swing of things. We had so much fun on that first Monday night playing with Daddy, taking a bath together, and reading books as a family, that Lily and I did not want to go to bed. Do you blame us?! We just didn't want it to end... but the night inevitably concluded with tears.

Tuesday morning was spent at the hospital (starting at 6:45am!) for my chemo by lumbar puncture and clinic visit. On Wednesday, Lily and I went to see Santa with Nana and Laura. While I was very excited to talk about going to see him, when it came down to meeting and talking to him, I was terrified. Needless to say, Nana bought a really cute picture of Lily with Santa Claus. When asked if I had gone to see Santa, I replied solemnly, "Yesh... Santa's B-I-I-G-G-G-G!"

On Thursday and Friday, Laura took care of me at our house. She was pretty patient with me, but I know she’s having some difficulty with knowing which behaviors of mine are related to my illness, and which behaviors are simply a result of me being two years old. To be honest, Mommy’s having the same trouble. Friday night, Lily came home feeling under the weather, and Mommy ended up taking her to the same urgent care where we went because of my initial limping in mid-October. I could tell Mommy was a little nervous about going there with Lily, but I was sure glad Laura could stay with me at home. It turned out that though the strep test came up negative, the doctor at urgent care treated Lily for strep. They told Mommy that it looked like it, and with me just getting home earlier in the week, they didn’t want to risk it. Another complication was that Lily and I needed to be separated for 24 hours, until her antibiotic kicked in.

Saturday morning, Lily and Laura left for Nanna B. and Poppa’s house, and Mommy’s fun friend Nancy came over to play with me. She even brought cookies and bags of toys with her! How cool is that?! While I didn’t want Mommy and Nana to go shopping without me, I agreed to it when Mommy promised to get me a Dora watch. Nancy and I had a great time building towers (and knocking them down) and playing with something called a toy record player, among other things. I’m sure that Nancy is going to make a great grandma someday, but until then, I’ll let her get her “kid fix” with me (I enjoyed spending time with her, too).

Mommy and I were able to play in the afternoon and evening, and Lily surprisingly wanted to stay overnight at Nanna B’s with Laura. I cried when I woke up from my nap and couldn’t find her, and in the morning on Sunday, I cried for her again, since she still wasn’t home. Mommy and I thought she would want to come home and make candy, cookies, and ornaments with us, but she wanted to go to Avery’s to make cookies first, then come home and do those things with us. A typical Kniskern… wanting everything! We waited for her to do the fun holiday activities, but by the time Daddy brought her home, we settled on just making candy.

Daddy went hunting with Uncle Stefan on Monday morning, and Laura stayed to play with me. When Mommy got home from work with Lily, we started painting and decorating ornaments, and the home care nurse visited. Changing the cap and tubing for my PICC line went fine, but the dressing change was another story. Let’s just say that Mommy asked Laura to take Lily out of the room for a little while. I’m sure glad that I’m getting my central line on Wednesday! The nurses say that the dressing change isn’t as bad, and the line only needs to be flushed once a day, rather than twice. We’ll see…

My labs came back Tuesday morning, and they were great! Though my white blood cell count was low (3.5, and normal is 6.0-17.0), my Hgb wasn’t too bad (10.5), my platelets were normal (325,000), and my ANC was 2,030. I’ve met the criteria for my central line placement as well as starting the next phase of treatment, so it will begin Wednesday. Mommy’s a little worried that my weight has gone down too much, since I haven’t been eating much, but hopefully that will change with the next round of chemo.

Mommy is going to try to post some pics for me later today, but I know it’s getting more difficult for her to keep up with the blog when she’s working and taking care of Lily and me. Maybe I’ll nap so that she can get that done…

12.07.2008

We're ALL home!

I can't believe it, but we got to go home late this afternoon! God bless the doctors and nurses who were on duty today for letting us go. I don't have much time to write tonight (I have a lot of "toy playing" to catch up on). I just thought you might want to know that we are finally home (and I'll write more soon)...

12.04.2008

Days 14-16
















What a difference not having a fever makes! I have actually been able to get out of the room (Mommy's still making me wear a mask, though, regardless of the fact that my ANC is higher than the average person's), and I want to play. The doctors have started taking away antibiotics - Gentamicin and Ambizome yesterday, and Vancomycin today. The only one I have left is Zosyn.

I'm tired of taking the oral meds, though. I'm fighting it every time, and the past few days, I have actually vomited right after taking medications by mouth. The mix of Bactrim and Tamiflu came back up two days in a row, so it's good that I'm finished with the Tamiflu now.

The bottom line that you're all wondering about... when do I get to go home? Well, Mommy asked Dr. Pope this morning, and she said that she's a pessimist, and she's looking at Monday as our discharge date. She said that if I surprise her, we might be able to go home earlier. AWESOME! Here are the things that need to happen:
  • I need to be without a fever for 48 hours - check!

  • My counts need to be high enough - check! They are super-high: platelets at 842,000 and ANC at 7,110!
  • I should be eating and drinking on my own, rather than through TPN (my PICC line) or maintenace IV fluids - well, they're working on giving me a larger window of time when they take me off TPN so that I can get hungry, and they have dramatically cut my IV fluids. Yesterday, I wanted to eat and drink during that window, and I did eat a little. Unfortunately, not all of it stayed down. I think I'm not used to moving around so much or eating, so now that I'm doing it, my body is telling me I'm moving too fast.

  • I need to be off the antibiotics - (almost) check!
I've been staying busy... going to PT, OT, and speech therapy, and the music therapist (Beth) has been stopping in to sing with me. I've also been heading to the play room and taking walks more often the past few days. It really makes it nice to take a walk or to go to therapy without being tethered. When they give me a "window" during the day that I'm not on TPN, I'm not attached to anything (Daddy calls it not having a "tail").

Please continue to pray for all of those bullet points above. I really want to go home and move forward with being a "normal" two year old!

12.01.2008

Day 12 & 13 (Consolidation)
















Okay... here's the deal. I'm getting a little tired of listing every little detail about each of my days, so I'm going to start summarizing a little more. After all, Mommy's hands are getting a little tired of typing, and with her going back to work, she's not going to have as much time to take my dictation.

Sunday -
Around 7:30am, I was awakened by a large portable X-ray machine on my belly and a hard plate under my back. Nothing ever came of the pics, but everyone was concerned about the stomach cramps I was having in the middle of the night. I slept on Mommy's lap in the rocking chair from 8am-1:45pm. Boy... her hiney must have been sore! The doctors were all very puzzled still, because they couldn't figure out what is causing my fever (this was the seventh day) and flu-like symptoms. All of the tests they've done have come back negative, and nothing has grown in any of the cultures. They decided to do a urinalysis, and they needed what is called a "clean sample." I'll spare you the specifics, but Mommy and Nana were anything but clean by the time they got the sample!

My counts were awesome: ANC - 11,300, platelets - 366,000. While this is very good that my body is responding by making lots of platelets and neutrophils, it is bad in that it means there is some type of infection against which my body is trying to mount an attack.

Daddy and I played in the evening, and he polished my fingernails (pink, of course). I told him I wanted earrings like Mommy's, so he said that when we get out of the hospital Lily and I can get our ears pierced. He says that the pain from piercing wouldn't be anything compared to what I've been through, and I might look more like a girl with the pierced ears. I don't really get what he's saying, but Mommy voice sounded kinda funny when she told him, "We'll discuss it later."

Monday -

I had a fever again overnight. Daddy was with me when I woke up in the morning, but Mommy wasn't anywhere to be found. Daddy told me she went to work and that I'd see her later in the day. Hmmm... she hasn't done that since I've been in the hospital - hope that goes well for her.

Laura came down to the hospital and spent the day with Daddy and me. It was really nice to see her - I missed her when she went home over the long weekend. I think I made her day when I let her rock me and cuddle with me. I sat at my SpongeBob table and colored, sorted M&Ms, and played with my Candyland Castle game (see pic), which I'm getting hooked on, because it's like a slot machine.

I had "fighting" counts again today: ANC 11,390 and platelets 441,000. All of the tests so far have come back negative, and I still had a fever and diarrhea, so the doctors aren't sure what's going on with my body.

Lily and Mommy came to the hospital for dinner tonight. It was so nice to see my big sister; I have missed her a ton. We played with Play Doh together, and I had a lot of fun. We also tried on bunches of different hats that Mommy brought with her (see pics). I kept mentioning the good time I had with Lily to Mommy later on, even after Lily, Laura, and Daddy left.

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)






















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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