11.02.2010

Fall Fun






























Not much news to report... I just wanted to share some of my latest pics. It's been a great fall, mostly because I've been feeling really good. Preschool is so much fun, and I am learning a lot. I can't stop singing and dancing!


My last two clinic visits for chemo are November 16 (OR for spinal tap, intrathecal methotrexate, and IV vincristine) and December 14 (just IV vincristine). Unfortunately, Dr. Absalon wants to get one more treatment in during December, so I'll have the December 14 appointment, and my steroids and oral chemo will be completed on December 18. I think this is called my EOT (End of Treatment). Nice early Christmas gift... huh?! They'll remove my port at the beginning of January, and then I'll have a clinic appointment with blood drawn once a month for 18 months.


We're almost there!

10.19.2010

It's my cancer-versary!

Thanks to our wonderful friend Brandi in ChildLife on A5S and the Dragonfly Foundation, we got to see the Princesses on Ice a couple of weeks ago. This had to have been the best day of my year so far!
Lily was asleep within five minutes of leaving US Bank Arena after seeing the princesses...

... me, within four minutes!


Cinderella's grand entrance earlier in the night for the character meet and greet



Lily and I chose our own face painting designs during the Cincinnati Walks for Children's Hospital event last weekend. I told Mommy that I got the hearts because, "I love you."


Mommy finally talked me into wearing overalls, and I realized that I don't look like a boy at all (I'm pretty cute, huh?!)

Our neighbor Mr. Jude took us all on hayrides through our neighborhood Friday night, and we had a blast! I think I went three times, and Lily probably took five trips.

Kenlie and I enjoyed a post-hayride campfire chat


Well, it's officially been two years since my diagnosis. I'm surviving and still in remission, too!

I had chemo at the Liberty campus yesterday, and my counts were so good that I'm now back up to 100% on my normal oral chemo. They moved my November 9th OR procedure (which was scheduled to be my second-to-last treatment date) to November 16th due to some doctor retreat thing. I guess they need to have some doctors around if I'm going to be put under... From what Mommy can tell, though, this is fabulous news, because my last treatment visit might be November 16, instead of December 6. We're still awaiting confirmation on that, but I'm ready to celebrate!

I'll still have to take my oral chemo until December 17 (the end date for my treatment), but after my last treatment visit, I can get my port removed. Mommy, Lily, and I are going to visit Nana and Papa in Florida right after Christmas, and it would be great to have my Ariel removed (and the wound healed) before our trip. Following my treatment, we'll need to go to the clinic once a month for eighteen months for checkups, but they'll draw my labs in the clinic, rather than the day before. What's even better is that they can take them through my arm, instead of using my port. Daddy covered my eyes on Sunday when they drew my blood through my arm, and I didn't even cry until he uncovered them and I saw the needle. They can use a much smaller needle for the veins in my arm than they need to access the port in my chest.

Anyway, I just wanted to let you know that we are all seeing the light at the end of the tunnel. Thank you for continuing to pray for me... I think those positive thoughts and prayers are what have been helping me through. I hope you enjoy the random pics from the past month or so -I've been been feeling quite good and busy!

9.16.2010

Started preschool!

Michael and Michelle's wedding reception - I danced like there was no tomorrow

Child Life at Children's Hospital rocks! They gave me "private" playroom time, since I was in isolation the whole time we were there. Lily and I enjoyed playing doctor and nurse with some of the babies. Mine looked like a mummy when I was finished with her.

Like my duck feet?!

Daddy brought our Wii, and Nurse Allie and I had fun sword fighting!


Isn't Finn getting big? I love him so much (even though he steals my toys and eats my food)!

I was SO ready to go to school! I even wanted to wear my backpack in the car.

Don't I look like a normal kid?! I'm not a "growned-up" yet, but I'm getting pretty big. I was so excited to start my first day of preschool yesterday... I even woke up at 6:15, ready to go. Unfortunately, it took a long time before the school opened. My teachers, Mrs. Kathy and Mrs. Kim (or "black hair" and "yellow hair," as I call them) are so nice. Actually, I liked everyone I met yesterday at school... I just can't remember anyone's name. I'm going to Montgomery Community Church Preschool four mornings a week, and then I'm going to 'Nise's in the afternoons. It's going to be a fun school year!
I'm sorry Mommy has taken so long to update all of you! It's been pretty busy, though, with me having that hospital stint at the end of the summer and then school starting. I'm gonna give you bullet points to catch you up:
  • I ended up staying in the hospital for one full week (you got the low-down on the first couple of days in the last blog entry). The bottom line, after lots of blood cultures, nose cultures, stool samples, an almost full-body CT scan, and a week in isolation was that they think I had a funky virus. Yes... you heard me correctly. I actually had a fever for six days, and it didn't come down with the antibiotics I was on (I think I was on four different ones at the peak of my treatment). My counts were slow in coming up... and I bottomed out at zero for a couple of days. It was so nice to go home, and that day, I sat on the carpet and played by myself for almost an hour... singing and just happy to be home and comfortable.
  • The day after they released us, I got to go to my mommy's cousin's wedding reception (or, the "party with dancing and cake," as I called it). You can tell in the pic above how sweaty I got dancing. I had so much fun that I refused to leave. It didn't work, though. Mommy and Daddy made me go home :o(
  • My liver enzymes were still a little elevated a week after leaving the hospital, and my counts were not coming up very quickly. They held my chemo for about two weeks, and I got to skip my steroids for the month of August. Mommy almost hugged Dr. Absalon when he told her that I didn't need to take my steroids (A.K.A. my "nice" medicine) for the month.
  • The next time I had labs drawn, my counts were in the range the doctors wanted. Dr. Pope started me up on my chemo again at 1/2 of my dosage.
  • I am scheduled to go in for labs on Sunday and to the Liberty clinic on Monday. I'll be getting Vincristine, and I'm assuming I'll be starting on my steroids again (BOO!). I will try to remember to have Mommy update you after my appointment.
  • We have a date for my last chemo-related clinic visit... December 6! After that date, I will just continue my oral chemo at home until December 17, they can remove my port, and I will be finished with treatment!!! I'll still need to go to the clinic each month to have blood tests and checkups, but no more chemo!

Please send me your healthy vibes for the next few months! I'm still immunosuppressed, and I don't want to have any more extended hospital stays (ever). We're so close...


8.07.2010

Playroom or bust

Get me out of this room! Yes, I'm stuck in a hospital room with a temperature that keeps climbing and blood counts that won't, but I'm feeling like I want to go play in the playroom. They keep telling me, "Sorry... not today. Not until your fever is gone for 24 hours."

I ended up here early afternoon on Friday, because I woke up with a fever (100.4, which is high for me), and after they drew my labs in the clinic, they found that my ANC was only 120. It was 400 on Monday, and my liver enzymes were elevated (this means my liver is not tolerating my medications well), so they held all of my chemo. My counts should have come up and my liver enzymes were supposed to go down (they did a little) when they cut out my chemo.

They gave me a dose of Rocephin in the clinic and Tylenol yesterday afternoon once I got into my room on A5S, and my fever went away for the evening. Overnight, though, it went up as high as 102.7. My labs this morning showed that my ANC was only 60, and the rest of my counts look pretty putrid, as well. They think I have some type of virus, and the doctors are seeing lots of kids here as a result of low counts (neutropenia) and fevers. Remember that a virus isn't something little for kids like me, and others here on the hem/onc floor. Because of our compromised immunity, it can be deadly.

As a result they started me on Zosyn today, but my fever persisted all day, even after doses of Tylenol. A throat culture this evening (this time for three of the most common viruses they are seeing) and more blood cultures were ordered, so that they can try to narrow down what is causing the fever. This now means I'm in isolation until the cultures come back negative. To make sure I'm completely covered, the doctors started me on Vancomycin, another antibiotic that I've taken before. Unfortunately this time, I had an allergic reaction called "Redman's" to it. My scalp and face started really itching, as well as my diaper area, and I couldn't take it! It came on so suddenly, but when they stopped the flow of the Vanc before my dose was completed, I instantaneously felt relief from the itching.

Atarax was given to me around 10:45, and they were planning to slow the flow of the remaining Vancomycin (instead of giving me the whole dose in an hour, they would spread it over two hours) to minimize my reaction to it. The reason I am not getting Benadryl for the allergic reaction is that I get hyperactive and kind of mean, rather than sleepy like most people. Mommy and Daddy found this out the hard way when I was given Benadryl before blood and platelet transfusions. Hopefully this Atarax will be better.

I am finally asleep right now. It's been a long couple of days, but I'm hanging in there. Please pray that my fever goes away and my counts rebound quickly! I want to go home... or at least to the playroom.

7.29.2010

Back in Cinci

Lily helping Poppa make blueberry jam

I loved the beach, even without my swimsuit

This was about the midpoint of our exhausting 10-mile hike around Craig Lake. My legs were tired from my chemo, so Mommy and Daddy carried me in a backpack the whole way.


How cool! We saw a couple of bald eagles on the Peshekee River and Lake Michigamme.


The "little housey" we stayed in during our vacation to the Upper Peninsula of Michigan - this is the Kniskern family cabin, built in the 1930s, on Lake Michigamme.

I loved the playground at the Lower Harbor in Marquette!

On "the rock" at sunset on Lake Michigamme...
Avery, me, and Lily on the newly re-anchored dock

Anja, Lily, and me on the famous Michigamme rock

One of the many beautiful sunsets we experienced


After eight fun-filled days in the UP, we're back! With temps in the mid-seventies and low humidity, it was perfect weather. We wore bug spray the entire time, and I escaped without any bug bites. Mommy has a theory that the bugs don't bite me because they don't like the taste of my chemo, but I'm not sure. Maybe it's just that I'm not that sweet! :o)

It was awesome to spend time with all of the Kniskerns. I was able to see my Great Nanna, Nanna B, Poppa, Great Uncle Jon, Great Aunt Laurel, (Uncle) Matt, (Aunt) Emily, and Anja. We had some great family dinners with traditional UP foods like pasties and cudigies and Uncle Jon's soups (not that I tried anything new), but everyone else seemed to enjoy them.

We took daily walks to the playground, picked berries (raspberries and Mommy's favorite, blueberries), swam at the beach and in the lake, fished, and played a ton. We were able to visit Great Uncle Jon and Great Aunt Laurel's new house (beautiful!), and we were even able to see Mason, Avery, Uncle Jon, and Aunt Renee the night before we left since they were staying in the cabin the next week.

The Tuesday after we returned from our trip, I had to go to clinic (in Clifton) for chemo. My ANC, platelets, hemoglobin, and white blood cell counts were all good, so they were able to go ahead with my Vincristine. Dr. Pope was a little concerned about my liver enzymes, though, as she said they were elevated again. The levels could be up as a result of chemo, as well as the Fluconazole that I'm on for my weird foot rash issues. She decided to pull that medicine from my nightly repertoire and test my blood again in two weeks. If my liver levels are still up, they might need to pull some of my chemo. You know, I wouldn't mind giving up a couple of my medicines... some nights I have to take seven syringes full of medication!

While in clinic, Mommy asked where I was on the growth charts because she was concerned that Anja (my 2 1/2-year-old third cousin in one of the pics above) was about the same height as me. I am four now, you know. Dr. Pope printed out the charts, and though I'm only in the 25th percentile for height, it's where I've been since starting treatment. For weight, I'm in the 75th percentile, and that's been steady, too. Dr. Pope said that there's no way of knowing how tall I would have been without treatment, but once I stop taking chemo, I might have a growth spurt in the first six months. The bodies of most kids my age are focused on growing, but mine is working to build new blood and marrow. Another stinky side-effect...

I had a really bad reaction to my chemo on Tuesday and terrible week on steroids. I so want to be done with all of this! I told Mommy I didn't want to do this anymore last week, but she said I have to have a "tubey" five more times. That doesn't sound like many more times, but you don't understand how painful it is to have a needle shoved in your chest and then a big sticker ripped from the sensitive skin there. Let me tell you, it sucks! This "nice" medicine, as Mommy calls it, is for the birds, too. I can't make up my mind about anything, I am mean (without even trying), and I'm hungry all the time, although I can't decide want I want to eat. It's quite frustrating! I also don't have much energy and I get hot very easily, so I don't want to swim or play outside.
December 17th, please come quickly!

This week, I'm gradually getting back into routines, but I'm testing everyone. It's not the chemo... it's just me being a toddler. We went to Kings Island on Monday, and I even rode my first roller coaster. That evening, we went to the Clermont County Fair, where we saw lots of animals, played games, and watched some of the tractor/truck pull. It was so cool! That was my favorite part of the evening. I jumped up and down, squealing with delight each time one of the trucks or tractors pulled that heavy sled. If I had taken a nap during the day, we would have stayed longer to see some of the really tripped-out vehicles race.

Well, I've gotta go... we're headed to the library for a puppet show!

Love and hugs to you all...

7.05.2010

Brief updates

Don't forget to check out the video at the very bottom of this post!



Hippie me!



LOVE my big girl bed!


I built some cool sandcastles at the beach.



Look at me go!




My first 4th birthday celebration...





Lily and I on the beach...







Okay, so Mommy's been bad about updating my blog. I can't believe she hasn't typed anything for me since May 6th! So much has happened since then. Hmmm... where should I begin? In the name of efficiency, I'll just have her key in some bullet points to catch you up quickly:



  • The Butterfly Walk (our second) was again an amazing event! Though freezing cold and again very windy, we had a blast. Fifty wonderful people ended up joining our Becca's Believers team, and in the end it turned out that we were the second highest fundraising team, collecting $3,239 for CancerFree Kids! How cool is that?! Thank you to all of you who supported our team by donating or walking. I'm guessing that the event will be held on the Saturday before Mother's Day next year, so we hope you'll be able to join us.


  • Our new puppy Finn is getting much bigger. He is heavier and larger than me now, but I'm so vocal that he knows I am the boss. One of Finn's favorite pasttimes is to steal stuffed animals that I am carrying and run with them so that we all chase him while saying "Aannhhhhh!"


  • I'm not wearing diapers anymore! Wahoo! I know... I'm almost four years old, so it's about time, but please give me a break. I was nearly potty trained when I was diagnosed almost two years ago, but it's really difficult to lug an IV pole into the bathroom at the hospital every time you feel like you might need to go, and when I was on steroids for 30 days straight, I didn't want to get up for ANYTHING. In addition, the way that the chemo has affected my bowels is something I don't want to get into right now, but let's just say that it threw a wrench into Mommy and Daddy's plans to help me with potty training. Anyway... about a month ago, I decided that I wanted to go poopy on the potty so that I could have a big girl bed. Mommy and Daddy had tried every other bribe imaginable already. Though I loved my crib and didn't want to give it up until recently, I have had my eye on a lavender Tinkerbell toddler bed. I told Mommy I didn't want to wear diapers anymore, and there's been no turning back! I even gave all of my diapers to Kenlie next door, since I won't need them any longer (not even at naptime and bedtime). Mommy is keeping me on steady doses of Colace, and this has made it so much easier. I love how she gets so excited when I go poopy, and I make sure to tell her (as well as anyone else who is available) to come see every time I go. I'm pretty proud of myself, and I really can't wait to be "growned-up" (that's how I say it)!


  • Mommy, Lily, and I took a vacation to Myrtle Beach in the middle of June. Miss Kara and Emma were awesome hostesses, and they allowed us to stay with them in their condo. This year at the beach was so much better because I have a port! If you'll recall, I had a central line (external tube on my chest) last summer when we went to Myrtle Beach, and I had to try to stay dry so that my dressing didn't need to be changed. Yeah, right... EXACTLY! I'm becoming a good little swimmer with the help of my hot pink swim arms, and I am quite brave. During the trip I started putting my face in the water much more (without prompting and crying that I had water in my eyes). Unfortunately, I started experiencing some leg weakness during the trip, so I wanted Mommy to carry me a lot. Not too easy when she was trying to transport everything else under the sun to the beach and back... She ended up buying me a new stroller, and that helped a ton (although strollers don't work so well on sand, in case you weren't aware). The hardest part of the trip had to be the car ride there and back. Mommy and Miss Kara decided to leave at 3am to drive to Myrtle Beach, thinking we would sleep until at least 6 or 7am. That didn't happen, and Lily was already talking about being homesick 30 minutes into the trip. It took us 12 hours to get there with five stops. On the way home, Miss Kara and Mommy decided to leave at 6am, since they knew we probably wouldn't sleep anyway. We made good time getting out of the beach area (REALLY good time), but then we hit traffic, construction, and tons of potty breaks around the Asheville area. So... 13 hours and about seven or eight potty stops later, we made it home.


  • Since we've been back, Lily, Mommy, and I have been swimming a lot, going to story time at the library, and just having fun playing. Lily and I are finally starting to play together really well, at least until I ruin it by instigating an argument (sometimes just because I want to). Oh, yeah... I had a clinic visit on the day after Father's Day, too. I wiggled while Nurse Pam was trying to access my port, though, and so she had to stick me a second time in order to get the needle in the right place. Needless to say, I was a little angry, and I told Mommy that I was never ever going to do that again. I ask her all the time if it hurt when she was little and got her chemo, but I don't understand why she didn't have to get chemo (or take medicine like I do). Mommy asked Dr. Absalon about my funny gait (I had been almost limping again while we were on vacation), and he said that he sees it all the time in kids (even teenagers), and it's a result of the chemo. It's just leg weakness and almost looks like I am delayed in my development. I guess I need to continue my exercising. I also wrote my name for the first time during that clinic visit! I made a picture for Dr. Absalon, and I wrote my name perfectly. How cool is that?!


  • The best news of all... I am turning four this week! Yes, my birthday ("my Tinkerbell birthday," as I refer to it) is coming. I cannot wait! Mommy and Daddy already gave me a big present, and I thank them for it every day. I have a new, "big girl" bike and helmet. I want to ride it constantly, and I'm wearing down the concrete on the sidewalk between our house and the Bachmans'. The morning after I got the bike and rode it for two hours straight, I opened Mommy and Daddy's door at 6:15 am, telling them that the sun was up and I wanted to ride my bike. I don't understand why they didn't think it was a good idea...


  • The final bit of news is that we are leaving for a vacation in the U.P. (Upper Peninsula) in Michigan in a few days. The last time Lily, Mommy, and I went, I had just turned one and didn't walk yet. We're all looking forward to the trip, and Nanna B., Poppa, and Great Nanna are going to be there with us at the same time! There will be hiking, blueberry picking (Mommy's favorite), fishing (Daddy's favorite), swimming (if the water's not too cold), and lots of family time. I hear I might even get to see Uncle Matt, Aunt Laurel, Uncle Jon, and perhaps Aunt Emily and Anja. We are taking lots of bug spray, 'cause I hear that the state bird of Michigan is the mosquito.

I hope you are all having a good summer and this post finds you happy and healthy! I will update you sooner the next time...


Love and hugs,
Becca



I thought I would leave you with a laugh...



5.06.2010

Ready for the Butterfly Walk

Lily and I are gearing up for our second Butterfly Walk this Saturday, and we've been counting down since last year's event. We now have 45 people on our team! The online registration has now closed, but if you want to come on Saturday, you can always register that morning. We will be at staging area A3, and Mommy wants to get us there around 9am so that we get a good parking spot and can give out t-shirts and bracelets to everyone as they arrive.


This year there is a satellite parking lot at the North Cincinnati Community Church, 6170 Irwin-Simpson Rd and 2 shuttle buses running from 6:30am-3pm that day. Once the Cottell Park
lot is full, you will be directed to the satellite lot to park, or you may still park on the streets in the neighborhood behind the park.


There is a short ceremony just before the start of the walk where they will honor the cancer survivors who are present that day (including ME!). The ceremony starts at 9:45, and the walk will start at 10:00.


The Junior Jog (11:30am) is new this year, and this is what the Butterfly Walk website says about it:

Kids will have a blast competing with their age group for this ¼ mile run on
the paved path around the pond at Cottell Park. This event is open to all
registered walkers age 12 and under and is included with the Butterfly Walk
registration. After the one mile Butterfly Walk is complete, participants will
have enough time to play a little, and rehydrate. But, don’t be late to the
starting line! The first 250 runners will receive a ribbon just for participating.
Please sign up in advance at: http://www.butterflywalk.com/id46.html.



If you cannot make the walk and still want to support the team, please consider making a donation at http://www.active.com/donate/2010Butterflywalk/2010beccasbelievers . Every $50 gets us one hour closer to a cure!

5.02.2010

Outgrown my chemo

I had an OR procedure and treatment on Tuesday last week. I woke up from my lumbar puncture acting pretty drunk, and Mommy and Daddy were trying not to giggle at me and how heavy my head was. Overall, I did really well, and I let Daddy take my sticker off so that the nurse could de-access my Ariel (port). We got to stop at McDonald's for a shake on the way home (Mommy always gets me one after I have something yucky done to me), and after lunch, I had lots of energy (see the video below). You'll also notice the newest member of our family in the video. His name is Finn, and he's an 18-week old lab mix that we rescued from a shelter a couple of weeks ago. I think I like him (at least I say I do), but it's been an adjustment since he especially loves my toys, slippers, and panties.


By the end of last week, though, my mean medicine was taking effect BIG time. I just wanted to cuddle with Mommy (a problem when Mommy's working), I was quite fragile emotionally, I couldn't make any decisions about food or activities, and Mommy and Daddy had to actually give me some Seroquel to calm me down after the meltdown I had Thursday night. Once I was coherent, I told Mommy that I didn't want to take my chemo any more... that I wanted to give it to Kenlie. You see, Kenlie is my neighbor who will be two in June, and I give her clothes, shoes, and toys that I have outgrown.


Well, only eight more months of this... right?! Here's hoping it goes quickly...




4.18.2010

Feeling better

As you can see, I'm feeling much improved! I love to dance, and thanks to the "You can learn to Hula" DVD from Miss Kara, I've picked up a few new moves. I don't so much follow the directions, but instead I move to the music of my own drummer. Yep... that's me in a nutshell!

Less than two weeks until Butterfly Walk

Join me for the Butterfly Walk for CancerFree Kids on May 8th at Cottell Park in Deerfield Township. The funds raised from this walk will go towards pediatric cancer research, and my team ("Becca's Believers") would love to have your support. It is only a one-mile walk that starts at 10am, and there are lots of fun family events that will take place until 2pm that day. If you would like to join our team or donate, visit http://www.active.com/donate/2010Butterflywalk/2010beccasbelievers . Hope to see you there!

4.12.2010

It sucks!

So this is the new phrase Daddy taught me, and though it may sound crass, it is fitting. I've been in and out of the hospital over the past few weeks, and I'm just now starting to feel better.


It all started the Thursday evening of March 24. I surprised everyone with a fever of 102 (which is a really big fever for me) and no other symptoms. With the clinic closing at 6pm, Mommy and I had the misfortune to be sent to the ER. At 3:30am the next morning (seven hours after arriving), after being poked, waiting, being asked the same questions four times, waiting, a nasal culture, waiting, a urinalysis, waiting, being given some fluids and a 24-hour dose of IV Rocephin, and more waiting, we were released. Nobody could figure out what was wrong with me. My counts were high, all of the tests for bacterial and viral infections came up with negatives, and my fever went down with Tylenol.

No problems the next day (just really tired), but then on Saturday, Daddy had to pick me up from Nanna B. and Poppa's house to take me to the hospital. I had "popped a positive" on my urine culture, so they were going to admit me to find out what was going on. Late in the afternoon on Sunday, they released me, still not knowing definitively what was wrong. The doctors thought that maybe it was a false positive on the urine culture, though.

Tuesday, I was supposed to go in for an OR procedure early in the morning, but because of my recent fever, they decided to hold off for another month (yes, that's the second time recently it's been pushed back because of my body not cooperating). Daddy took me into the clinic in the early afternoon for my Vincristine, though, and we had a rough time. When they de-accessed my port, something happened, and I kept screaming for about 45 minutes. Daddy, the nurses, and the doctors couldn't figure it out, but then Daddy (being the smart daddy that he is) asked if they could put some Emla on me in case it was surface irritation. They had thought that some of the Vincristine might have leaked out, and that was causing the pain, but that wasn't it. Once they put the cream on, I was able to calm down. You see, I'm allergic to Tegaderm and silk tape, and though they hadn't used that, I had been taped and re-taped so often over the prior 6-7 days, that my skin felt like it was on fire. I'm so lucky to have a good, calm, and smart daddy!

I had to start my yucky medicine (steroids) that night, and from that point on, I started laying around and moaning. I didn't eat or drink much all week, and I complained of my throat hurting. I also made gulping noises following any food or drink that I ingested. Mommy got back from her trip on Thursday evening, and though I was ecstatic to see her, I still felt awful. We went to the park on Friday, and I didn't even want to play... I wanted to lay with my head on her lap.

The rest of the weekend was more of the same... little to no energy, relatively no eating or drinking, and lots of moaning. Mommy called the clinic on Monday to see if we could go to the Mason location to get labs drawn. Mommy and Daddy were still concerned that something was going on, and the steroids should have begun wearing off by then. Unfortunately, the doctors decided they needed to see me, but the clinic was full, so they wanted us to go through the ER again. Ugh! Daddy tried to fight it to no avail, so he took me down around 3pm with my bag packed. Seven hours later, we were released (yeah!). If Mommy would've taken me, I'm sure we would have spent MUCH longer there. They never did figure out what was going on, but I'm thinking my yucky medicine just hit me really hard this month. Maybe really bad heartburn or acid reflux on top of it?!

I don't know what caused that really bad week, but I'm feeling much better now! This weekend was beautiful, and I was back to normal with eating and my energy level. I've been singing and dancing, and even cracking jokes. Something I cracked on accident Sunday night, though, was my head on the door frame. I was running with flip flops on and tripped, bonking my forehead on the door frame of the bathroom. Mommy looked really surprised to see the blood dripping, and Daddy sprinted for the medical supplies (luckily we have LOTS). This was my first real "injury," and Mommy and Daddy seemed quite shaken by it. It probably didn't help that I cried for a long time, but as I told them, my head "really hurts." I also thought I was going to have to get a tubey (accessing of my port), so my bottom lip popped out and I started sobbing even harder. Once Mommy assured me that I wouldn't have to get a tubey, I calmed down a little, and the Tylenol and Band-Aid with goopy stuff began to work their calming magic.

Hopefully, my goose egg won't be too big...

I'm getting tired, so I'm signing off for now. I'll try not to wait as long to update you, and I'll post some pics (there are a few from Easter and spring in general) really soon. You should see all of my hair!!!

3.02.2010

Bump in the road

If you haven't heard yet, I ended up in the hospital over the weekend. A fever of 100.2 brought me into the clinic on Friday afternoon, and after they accessed my port to draw labs and give me a strong antibiotic, they were ready to let us go home. They just wanted to wait until my ANC (neutrophils) came back, because my other counts looked okay. When they got my ANC, though, they decided I needed to stay. In order to be out and about without a mask, my ANC needs to be over 500, and I was at 110 on Friday. The doctors were a little perplexed at why it was so low, since I hadn't had any new chemo (just my normal nightly and weekly chemo) since the beginning of February.

Their best guess, after getting negative cultures, was that I was trying to fight off some type of virus. Dr. O'Brien, an attending who I hadn't met yet until this weekend (and who I really liked), said that they are seeing lots of patients coming in with RSV or other short-lived viruses. They have fevers and are neutropenic (have low ANCs), but after a few days in the hospital, their counts go up and they can go home. That was me this weekend!

It was a different kind of stay this time, though, because I was feeling pretty good but I wasn't allowed out of my room or in the playroom until Saturday afternoon. My cultures needed to come back negative before they would allow me that freedom. Needless to say, I was not happy. My ANC went up to 240 on Saturday and 470 on Sunday, and the chest x-rays they did on Sunday looked totally clear. We were released on Sunday around 5pm; good thing, because I really needed some sleep!

I was originally scheduled to have an OR procedure this morning at 6:30, but Dr. Absalon decided to hold off on the lumbar puncture with intrathecal Methotrexate since my counts were already low, and it makes my counts go down. They're also holding my oral chemo (Mercaptopurine and Methotrexate) until after they draw my labs next week and see if my counts have recovered. I still had to go to the clinic at 8:30 this morning for my Vincristine, but it doesn't make my counts go down. Let me just say that today's visit was one of my worst.

They left me accessed (the needle that was inserted into my port on Friday afternoon stayed taped to my chest until this morning) so that they wouldn't need to poke me again. Three nurses and Mommy held me down while one nurse inserted the needle on Friday, and I was really mad then. Today, it was even worse.

I've mentioned before that I don't like to be held down, well Daddy had to hold me on his lap, while Mommy held my arms, and the nurse gave me my chemo. Even though it didn't hurt, I told them I wouldn't hold still, and I was already uncooperative for all of the doctors and nurses that tried to listen to my heart and lungs at the beginning of the visit. Needless to say, I screamed quite loudly for a long time during my chemo, as they de-accessed my port, and long after, and I kicked and hit Mommy for the remainder of our visit after Daddy let me go. Mommy and Daddy looked exhausted, and the nurse, doctors, and our care coordinator looked shell-shocked. Dr. Absalon even suggested that Mommy and Daddy wait to start my steroids until after my OR procedure next month. I'm not sure if the steroids were solely to blame, but I know they contributed to my anger.

Hopefully, the remainder of my week goes quickly without incident and my counts go up by next week's lab draw. Though Mommy and Daddy think it's odd, I miss taking my nightly "yummy" chemo.

2.17.2010

Stairclimb Challenge coming soon

Check out my second cousin Sean:
http://www.pnwlocalnews.com/whidbey/wnt/news/84519597.html

He's the one in the white helmet, and his team has already collected over $4800 for the Leukemia & Lymphoma Society! Wouldn't it be so cool if a cure could be found soon?

Go Sean and the rest of the stairclimb team... I'm proud of you!

2.08.2010

Brave Becca

I got to go to Lily's friend Advika's birthday party at Run, Jump, and Play!



Giggly girls on the couch

Silly face

I am getting really good at polishing my own nails (LOOK at all my hair!!!)





"I was brave!" That was my mantra today. I got chemo this morning at the Liberty campus, and Mommy and Daddy kept telling me how brave I was. I tend to believe them, because I barely cried at all when they stuck the needle in my port, and Mommy only had to hold one of my arms. Usually, she needs to hold my head up and both arms down. Daddy thought it was a little disturbing that I'm getting used to getting poked in the chest, but I just think I'm brave.

I'm doing great right now, although I do have a little cold. No fever, though, and considering all that's been going around, I've been really lucky! I also have a funky rash on my heels and on the backs of my legs, but I'm supposed to see a dermatologist tomorrow morning. Dr. Absalon told us that the Methotrexate can cause all kinds of goofy skin stuff, so I guess that's what is causing it. We'll find out tomorrow if there isn't too much snow.

I've recently "graduated" from my physical therapy. Miss Tracie was so pleased with my progress that she doesn't need to see me anymore. I'm a little bummed, since I really enjoy playing with her. She has really fun equipment and toys; it's like open gym once a week. Miss Tracie gave us some take home exercises, and we will check in every three months or so to make sure I'm not losing any strength or muscle control from the Vincristine.

Tomorrow morning (after the dermatologist), Lily and I are scheduled to start ballet classes, and I can't wait! We will be in the same class, so it should be lots of fun.

Anyway, I only have ten more port accesses if all goes as planned! Have I mentioned that December 17 is my last day of treatment?! Mommy is counting down, but she just found out that I will still need to get labs drawn and go to the clinic once a month for a year and a half after my treatment is complete. She told Daddy that it felt like she was kicked in the stomach when she heard that. I would think it is painful to get kicked in the stomach, so she must be hurting.

Hope all is well with everyone. Sorry we haven't updated the blog very often, but luckily there's not much to report. Let's keep it that way...


Daddy says Mommy is overdoing the Abba thing, so this will probably be the last serenade you get from Mamma Mia. Enjoy!

1.13.2010

Disney Pics

I had Mommy post all of the pics from our trip to Snapfish and Facebook, but then she realized that not all of you are on our Snapfish list or FB users. If the link above doesn't work, here it is again:
http://www1.snapfish.com/thumbnailshare/AlbumID=2015575017/a=8493689_8493689/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/

1.05.2010

Quick update and short video

I was wrong... they didn't boost the dosage of my chemo as a result of my counts being too high. My ANC and platelets are within the desired range, so Dr. Absalon is going to keep my dosage steady. Though my clinic visit yesterday was the quickest yet, Mommy's wondering if it is ever going to feel okay to hold me down while the nurse shoves a really big needle in my chest. I know it's not okay for me...

I'm making fabulous progress with physical therapy! Miss Tracie was really happy with me tonight, and she couldn't stop talking about how much better I jumped tonight than I had in the past couple of visits. I worked so hard for about an hour straight that I nearly fell asleep in the car on the way home, and I told Mommy to be quiet so that I could sleep. It could be my "nice" medicine that's making me worn out, too.

My next clinic visit is Febrary 8, so please pray that I can stay healthy until then.

In the meantime, enjoy this quick video of me riding the teacups at the Magic Kingdom:

1.03.2010

Dream Come True















Wow! What an amazing Christmas I had. I'm sorry I haven't posted in over a month, but Mommy was caught up in the Christmas rush, and we had to get everything done before we left for our trip to Disney. Yes... I said, "DISNEY!"

The wonderful Make-A-Wish Foundation recently sent Lily, Daddy, Mommy, and me on a seven-day trip to the Give Kids the World Village in Kissimmee, Florida. Our adventure started with a limo ride to the airport on Sunday, December 20. Lily and I had a blast not riding in our carseats and touching the "stars" on the ceiling in the fancy car. We survived security, though it took Mommy and Daddy about 15 minutes to put everything back in and on all of us. The airplane ride was awesome, and the passengers around us got a kick out of the giggles from Lily and me during takeoff and landing. I even made a new friend on the airplane. A really nice lady, Ms. Amy, sat next to Mommy and me on the plane, so we both enjoyed talking with her for the entire ride. She works for Universal Studios, and we were hoping to see her there, but we ended up not going to Universal while we were in Florida.

We got into the Give Kids the World Village after dark, so we weren't able to see nearly how spectacular it was until the next day. I could tell that I was going to like it from the moment we pulled through the gates and entered the House of Hearts. The sweet woman checked us in, provided Mommy and Daddy with some information (and a huge packet), and gave Lily and me our first of many special gifts. We got to ride in a golf cart to our own villa, and we had fun running around to check out our home for the next week. Our energy ran out quickly, though (no naps on the plane), so we had dinner delivered to our villa, and we went to bed early.

Monday morning, we headed to the Magic Kingdom, as did everyone else in the Orlando/Kissimmee area. Throughout the day, Lily and I had our photos taken with Cinderella's Fairy Godmother, Ariel, Sleeping Beauty (Princess Aurora), Cinderella, Belle, and the fairies (Tinkerbell, Fawn, and Terence). We also rode some fun rides including the teacups, the Dumbo ride, It's a Small World, and the train. Lily and Daddy rode Space Mountain while Mommy and I took a tour of Mickey's and Minnie's houses and played on a cute little playground. Getting back to the village after dark again, we decided to veg out on the couch and have our dinner delivered. We wanted to see some of the cool things Mommy had read about in the village guidebook, though, so we donned our princess dresses to investigate the Castle of Miracles for spa treatments (face painting, manicure, and airbrush tattoos), a few carousel rides, the creation of our magic pillows, and to see the star fairy. We finished out the night with some hot fudge sundaes at the Ice Cream Palace.

On Tuesday, we ventured to the Animal Kingdom (which was also a very popular place). We got into the Lion King show just in the nick of time, and boy was it fabulous! I really enjoyed singing and dancing to the music and seeing my friends from the movie. After that, we got our pics taken with Mickey, Minnie, Daisy, and Goofy, and then hiked over to the safari. This was one of my favorite things from the trip (oh... and the teacups). We rode in a huge truck with like 30 other people, and we saw lots of cool animals that we don't normally get to see. Our tour guide/driver made the trip so much fun that I wanted to do it again, but we were getting hungry and tired so we left to go back to the village for lunch and naps. Having not really experienced a lot of what we heard about at the village, we chose to check out the life-sized Candy Land playground before dinner. It was the most fun of anything we had done so far, and we had been having loads of fun. Daddy called it the "cardboard boxes" of Christmas (whatever that means). Dinner at the Gingerbread House with Rocky the (fake) raccoon as entertainment, more ice cream at the palace, looking at the moon and Jupiter through a really big telescope, and a magic show at the Safari Theatre complete with ICEEs and make-your-own pixie sticks completed the evening.

Wednesday morning started with horseback riding at Keaton's Korral, breakfast, more rides on the carousel, and our first visit to the pool. Though the air was still relatively chilly, we knew it was supposed to get up to around 70 degrees during the day and the pool was heated. It felt great until the cold water fountains started spraying at 11am, but they warmed up within a half hour. The water playground was spectacular, too, but a little too cold for my taste. I chose to play in the sand with one of the volunteers instead, but Lily tried it out. Something feels so right, and yet wrong, about swimming at Christmastime; however, I think I could get used to it! The clouds moved in and cooled things off in the late afternoon, so we put on our sweatshirts and jeans to visit the playground again before dinner. During our meal at the Gingerbread House, one of the volunteers mentioned that Village Idol would be going on at the Safari Theatre that night. Mommy said, "Thanks, but we are going to have an early night." Daddy then waited a little while and asked me if I wanted to stand up on a stage to sing with a real microphone in front of lots of people who would clap for me. My reply was an emphatic, "YES!" As contestant #10, I sang a couple of lines from (yes, you guessed it) "Dancing Queen," and people did clap! Though I was a bit shy, I enjoyed the limelight and signing autographs after the show.

No rest for the "star" on Thursday morning... we had places to go! Mommy rushed us over for pictures with Mickey, Minnie, Belle, Pluto, and Goofy, then we grabbed a quick breakfast at the Ice Cream Palace before heading to Mauiva Air Tours for a private flight. It was a perfect morning when our pilot Jason strapped us in, gave us headsets, and took off over Kissimmee. We saw the Epcot ball, the Magic Kingdom, Animal Kingdom, Universal Studios, Shaq's and Tiger Woods' houses, and we even got to fly over the Give Kids the World Village. It was neat to see it from the sky, and we were able to pick out our villa, as well as the playground. Lily, Mommy, and I wanted to swim again, but Daddy decided to fish. He started feeling a little sick, and he's not really one to hang out at the pool much anyway. In the late afternoon, my cousins Rachel and Ricky, as well as Aunt Louisa and Uncle Rick came to visit. They were down at Disney for a 10-day trip, and it was Christmas Eve, so it was neat to see family. We went for ice cream first, then we raced around the playground, ate a nice dinner, rode the carousel, watched the Winter Wonderland parade, and visited Santa. It was a great night, but Daddy was feeling pretty awful, so we all went to bed early.

We woke up to lots of rain Christmas morning, and even more was predicted throughout the day, but we had planned to spend the day at Sea World thinking that most people wouldn't go there on Christmas. Mommy and Daddy debated just staying in all day with us, but Daddy really wanted to see Shamu. We made the wise decision to buy some rain ponchos and take a risk. It turned out to be a pretty nice day after all, and there were just a few sprinkles and one steady rain while we were there. We were able to feed and pet the dolphins, see the dolphin show, pet the stingrays, ride some rides, play in the sand, eat some lunch, and watch the Shamu show. Unfortunately, we're probably not welcome back at Sea World because of the tantrum that Lily threw following the Shamu show. It lasted for about a half hour in the park as we raced to the exit (in time for the downpour), half an hour in the car ride back to the village, and another half hour once we returned to the villa. I really shouldn't talk, though, since I had thrown a fit on the way to Sea World that morning. It might have just been me, but Mommy and Daddy looked quite exhausted; Daddy was sick on top of it. Needless to say, naps were taken, then we had pizza delivered to allow Daddy some rest. It was Christmas, so Mommy wanted to get us out for the evening (and away from our green daddy). We attended the princess and pirate party with Shamu and Dolly (the dolphin) with lots of other families, and of course, we rode the carousel again.

Saturday morning rushed by quickly. We had to pack up lots of stuff (we had accumulated more than we anticipated while we were there), eat breakfast, and check out so that we could make it to the airport early. Daddy was the sickest I've ever seen him, so it was an excruciatingly long day at the airport. Between his chills, coughs, and trouble breathing, I don't know how he made it. I asked Mommy not to write about the fits Lily and I both had on the last day, so she'll leave the gory details out. We didn't get to ride next to a really nice lady on the plane this time, but it was a relatively good flight. Frank met us with the limo, and we were whisked home to eat dinner that Nana and Papa had waiting and to rip open the Christmas gifts that Santa had left.

Poor Daddy! He went straight to bed and didn't even get to see us open our presents. Still feeling horribly the next day, and knowing he didn't want to give what he and Mommy decided was the H1N1 to the Kniskern family, he stayed home. Mommy, Lily, and I headed to Nanna B's and Poppa's house to celebrate Christmas with them, my cousins Mason and Avery, Aunt Renee and Uncle Jon, Great Nanna, and all the family dogs. We had a fun time, but it sure wasn't the same without Daddy.

Finally on Tuesday, Daddy went to the doctor. It turns out that he had H1N1, which turned into pneumonia, a sinus infection, and an almost-ruptured eardrum. By Wednesday midday, he started feeling a ton better, due to the strong antibiotics and steroids, and I could play with him and hug him again. Lily and I sure missed him! We spent lots of time this week making sure our new toys worked. It was great to actually play at our house. We also spent the night with Nana and Papa, visited with Great Nana and Great Papa, and spent the night with Nanna B. and Poppa on New Year's Eve.

So... did I have the best Christmas ever? What do YOU think?!

Mommy, Daddy, Lily, and I want to sincerely thank the Make-A-Wish Foundation, and the Give Kids the World Village, its sponsors, and thousands of volunteers, for making my dreams come true this holiday season. I said I wanted to meet the princesses, but who would've guessed I could feel like royalty, too? I had heard that they made it really special for "wish kids" and that there would be lots of surprises, but I had no idea of the extent to which these terrific organizations would go to make our trip so perfect. I would have to say that this was definitely the best week of my life, and I believe my sister would say the same. Mommy is working on a video with more pics from the trip (you KNOW she took a lot), but it's not ready yet. She'll post it to You Tube when it's finished. You can see from the few photos above, though, that we truly enjoyed ourselves!
Tomorrow morning I'm off to the Liberty Township campus of Children's for chemo. My counts are awesome, so they'll probably boost my oral chemo dosage again. They want to keep my ANC between 500 and 1000, and I'm above that (which is great). After tomorrow, I'm down to eleven more monthly chemo treatments at the clinic! I'm seeing that light at the end of the tunnel...