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.