1.20.2011

Free at last!

Snowy girls!

Mommy and I at the A Kid Again holiday party

No more chemo!

Teenager Lily in the wrist warmers that Nanna B. made her...

Pic with Santa at Carnival of Carols

The Kniskern grandkids (and Socks) the morning after making cookies

Lily and I on Christmas morning before opening presents.


Mommy got really embarrassed when she looked at the blog today and noticed that she hadn't posted anything for me since the beginning of November. I will apologize for her, because I know you have all been on pins and needles wondering what's been going on with me. I'm sensing a trend... the busier we are and the fewer times I'm in the hospital, the less she writes. I hope she stops writing altogether! :o)

Well, let's see... so much has happened in the past couple of months. I'll mix in the medical with non-medical happenings, since Mommy's referring to her calendar to write this.

Lily and I attended our first play with Mommy and Daddy at the beginning of November. The Loveland Middle School students performed Charlotte's Web, and those of you who have been reading my blog since the beginning, know that this is a favorite movie of mine. We had an absolute ball! When it was over, and we were walking out to the car, I kept telling Mommy, "It wasn't a long time... it was short." In other words, I didn't want to go home.

My last lumbar puncture (LP) took place on November 16! I know that doesn't sound like a big deal to all of you, but it is a huge milestone for us. The doctors had been putting me under anesthesia once every three months for the procedure, in which they take out some spinal fluid to test it for leukemia cells, as well as injecting methotrexate into my remaining spinal fluid. Cancer cells haven't shown up since November of 2008, which is fabulous news, but it is still a nerve-wracking event I'd rather do without.

We had a very nice Thanksgiving at Nana and Papa's house. Mommy's cousin Maria and her family came in from Chicago, too. Emma and I played together, and Lily and Austin and Connor had a blast. Too bad the Hilsmiers don't live in Cinci! The next day, we travelled to Nanna B. and Poppa's to celebrate with the Kniskerns, because we had missed them the day before. Poppa made a yummy meal (as always), and it was great to see Nanna B., Poppa, Aunt Renee, Uncle Jon, and my cousins.

Mommy and I ventured (in the cold rain!) up to Big Tree Plantation, a Christmas tree farm in Morrow, for my preschool class field trip on November 30. We saw just a little bit of the farm on a hayride, had hot cocoa and popcorn, and were even visited by Santa. Though I was shy with him and wouldn't get my picture taken with Santa, I enjoyed hanging out with my friend Katie.

Lily caught strep at the beginning of December, so she and Daddy had to miss the A Kid Again holiday party at Crossroads. Our whole family went last year, and though Mommy and I had fun this year, we missed Lily and Daddy. Mommy and I did some arts and crafts, played games, got my face painted, ate dinner and dessert, and had our picture taken with Santa and Mrs. Claus. A Kid Again is an awesome organization that provides fun events for kids like me with life-threatening illnesses. If you ever have the chance to participate in a fundraiser benefiting the organization, please do!

Unfortunately, I came down with croup on the day of my Christmas program for preschool. So instead of looking angelic and singing for all of the parents, I spent the day at the hospital getting an antibiotic and chest x-rays. Mommy was really disappointed, because I had been practicing my songs (especially one that goes, "Does the baby need a blanket to keep him warm? I've got a blanket I'll share"), and I looked really cute in my holiday dress. She was planning on taking a half-day off work so that she could see my performance. Though I didn't get to take over the stage, Daddy said I really enjoyed all of the attention at the hospital when I showed up dressed to the nines.

That weekend, Lily, Mommy, and I headed to Loveland High School for the Carnival of Carols. We watched the LMS and LHS show choirs perform (AWESOME!), and then we played games, made some ornaments, and got our picture taken with Santa (see above). It was a great way to get into the holiday spirit and support the show choirs at the same time.
On Tuesday, December 14, I had my last chemo appointment! Lily came along this time (the first time she's ever come to one of my chemo appointments), and we took cupcakes for all of the nurses and doctors. The Cincinnati Children's Hospital doctors and nurses are the best, by the way! They all came in with crazy hats, singing "Happy Last Chemo to you" and bearing gifts. Here's a video of the event: http://www.youtube.com/watch?v=elW9_ywnA58 Though I was very shy (I really don't like to be the center of attention), Lily and I had a ton of fun and really enjoyed the Barbies and horse with carriage. At this point, I thought I was done with "pokeys" in my port...

Little did I know that Mommy and I would both acquire a virus the weekend before Christmas. We had spent the day making cookies and slept overnight at Nanna B. and Poppa's house with Mason and Avery (Daddy was working on installing hardwood flooring in our dining room and family room). Mommy's throat started hurting on our drive down to Lexington on Sunday for the Ward Christmas, and I complained of my neck hurting. It was fun to see all of the Ward cousins - so many girls - and I loved getting presents. Unfortunately, it was a long drive, and I fell asleep right before pulling in the driveway.

I developed a slight fever the evening of Monday, December 20. It was right on the borderline of calling the oncologist on call at Childrens, so Mommy and Daddy just monitored me overnight. The next morning, because my temperature was 99.4, I still went to Denise's for the day. When Mommy picked me up, though, it was over 101. She called the clinic, and they said we needed to head in to the ED (ER) immediately. I was talking nonsense the whole way there; Mommy understood why once we got there and they took my temperature. At 103.8, it was the highest fever I've ever had! Right away, Mommy had to hold me down while the nurse gave me a pokey in my port (even though I had been promised I wouldn't get any more there). They drew labs and sent them off, while starting me on one antibiotic and swabbing my nose. Since the doctors were planning on giving me Vancomycin (and they knew I get "Red Man's" as a result), the nurses gave me some Atarax so that I didn't have an itchy allergic reaction.

Once my ANC came back, though, it was so high that they weren't worried about starting the Vanc. Instead, at 10:30, the nurses started my hour-long infusion of Rocephin. This was to last for 24 hours, and they told Mommy that if I had a fever at 10:30 the next night, I'd need to come in for another infusion of Rocephin (and another pokey). I fell asleep around 11:15 (likely a result of no nap and the Atarax), awakened by Mommy and the nurse beginning to peel off the sticker on my chest. We finally were discharged from the hospital at 12:30 am, exhausted but happy to go home.

We hung out at home on Wednesday, recovering a bit but deciding to not to make our planned trip the day after Christmas. We wanted to visit Nana and Papa, who were staying in Florida for the month of December, but the highs were supposed to be in the 40s and 50s, it was a 15-hour drive, and Mommy and I didn't feel up to the drive. Though Nana and Papa were sad to not see us, they totally understood why we cancelled the trip. They sent presents for us, and amazingly, they arrived in time for Christmas morning!

Mommy, Lily, and I did travel out to Nana and Papa's house in Morrow to spend part of the day and Thursday night there. Daddy needed to finish up the installation of the hardwood floor in our family room, so it made sense for us to vacate our house. Lily and I had fun building forts and playing with our toys there, but we sure missed Nana and Papa. We returned home the next day, but my cough was getting bad again, and Mommy was feeling really awful (she even lost her voice on Christmas Eve and Christmas Day).

Santa visited our house on Christmas morning! Lily and I tore through the presents, incredulous that Santa had known exactly what we wanted, even though we hadn't asked for all of the toys we received. Feeling yucky and afraid that we'd get the Kniskerns sick, Mommy and I remained at home on Christmas Day while Lily and Daddy trekked to Nanna B. and Poppa's house in Kentucky. It sure wasn't a fun Christmas, but it got better when Daddy brought home gifts from the Kniskern Christmas.

Because Mommy, Lily, and I had cancelled our trip to Florida, and we still needed to get out of our house so that the hardwood refinishing company could work on our floors all week, we planned to go stay at Nana and Papa's house. Nanna B. offered to have us stay at her house, instead, with Poppa. We decided that this was a really good idea, for we don't get to see them very much and it would be so much fun to have them to ourselves. Needless to say, we really enjoyed spending the days with Nanna B. and the evenings with Poppa and Nanna B.! We swam and jumped on the trampoline at the gym, rollerskated, played with Nanna B.'s toys, and did arts and crafts. Later in the week, we headed up to Nana and Papa's house to stay, because we really missed Daddy and we wanted to do some things closer to home. On New Year's Eve, though, we went back to Kentucky to spend the night with Mason and Avery at Nanna B. and Poppa's house, which has become a tradition. They spoil us so much! We had a great time, but Lily started feeling really sick (she got the virus Mommy and I had).

The day after New Year's, our family explored the Coco Key indoor waterpark. Lily really liked it, but I didn't enjoy it very much. You see, I'm still in the stage where I don't like to be splashed in the face with water, and there were lots of sources of splashing going on there. Maybe when I get a little older?!

I got my Ariel (port) removed on 1.11.11! What a lucky day. Mommy and Daddy kept talking about this excitedly beforehand, but I didn't really understand that this meant surgery. We had to go in for a dexascan (to look at my bone density) at 8:45; however, the snow held us up a bit. Luckily, they were still able to get me in for the picture of my spine, then we headed straight up to the clinic. Mommy and Daddy met with a couple of neuropsychology doctors when we first got in our room. They asked lots of questions, and Daddy and Mommy answered as best as they could. It sounds like they are going to do a 1/2 day of testing in February, and they left us with lots of questionnaires to fill out and have my teachers complete. Following that, Dr. Absalon and Dr. George came in to look at me for my first post-chemo clinic visit. We will need to come back to the clinic once a month for 18 months, but at least they can draw my labs during the clinic visits rather than doing it the day before. Dr. Absalon said I looked great and he's happy with how I'm doing.

We rushed over to Same Day Surgery next to get ready for my port removal. I put on a little doggie-covered gown and the nurse practitioner asked me what I wanted to drink when I woke up. I was starving and really thirsty at this point, as I hadn't eaten since the night before, nor had anything to drink since 9am. My nurse was fabulous (Nurse Marcia), and the anesthesia team did a wonderful job of tricking me into inhaling bubble gum-flavored gas and calming my nervousness. When I woke up from the surgery, though, I was really mad! My chest hurt, I could see the scar (which I thought was blood), and there was a pokey in my forearm. I yelled at Mommy a lot and kept telling everyone how much I hurt. Daddy and Mommy first decided to try Tylenol, but then I didn't want to take it. The nurse offered Morphine, and they agreed to that since I was so obviously uncomfortable. After I ate and drank a bit, and they covered my scar with a BandAid, I was a little calmer and wanted to go home. Whew... what a long day!

The clear BandAid (dermabond) is flaking off of my scar now, so we're ready to try using BioOil on it to make the scar disappear. Let's hope that it works so that I don't need plastic surgery in the future. Nothing else major is going on this week... aside from Lily recovering from another bout of strep, LOTS of snow (and snow days!), and getting ready for the No More Chemo party this weekend. Lily and I are so excited to celebrate with friends, family, and medical professionals that have supported us throughout the 2+ years of my treatment. Pics and details coming soon!

Please keep up the prayers and good thoughts so that I can make it through the next five months without unplanned trips to the hospital. My immunity is still going to be suppressed for about six months after stopping chemo, but then I should be good to go. I will also, hopefully, have a growth spurt following that time period. If you haven't noticed, I'm a little small for my age, but that's due to the chemo.

Love, hugs, and good health to you all!

* Sorry about the spacing above! Mommy kept trying to fix it, but Daddy made her just let it go...