Scott Firefighter Stairclimb

This coming March, Mommy's cousin Sean (my second cousin) is going to do something really cool for the Leukemia and Lymphoma Society. He's a fire chief out in Washington (the state), and even though he's more than 13 times older than me, he's going to travel to Seattle to race up 69 flights of stairs in full gear. Wow... I sure hope they have some oxygen and medical equipment ready for him when he's finished (Mommy wanted me to write that)! If you'd like to check out the details of what he's doing or donate to help find a cure for blood cancers like mine, please visit http://www.llswa.org/goto/SeanMerrill . Thank you so much, Cousin Sean... you are pretty amazing!


No more mean medicine!

Lily and I had fun riding Papa's new ATV on Sunday. Mommy and Daddy are in trouble, because I feel the need for speed!

The best part of the weekend was jumping in the leaf pile at Nana & Papa's house.

I'm so excited! Daddy says he's going to try to get "nice medicine" for me next month. I've been so nasty on my "mean medicine" (steroids) that Mommy, Daddy, and Lily have had it. Even after I stopped taking the mean meds this week, I kept hitting Lily, pulling her hair, and screaming at everyone. I explained to Mommy and Daddy that I'm on my mean medicine (and of course that's why I shouldn't be punished), but that's when Daddy mentioned to me that he was going to try to get some nice medicine from the doctors next month. Such a smart daddy!
I sure hope it tastes better. Maybe it won't make me eat so many fish sticks either. Mommy bought a bag of 115 Gorton's fish sticks at the beginning of last week, and I think there are only five left right now. Oh yeah... I'm the only one in the house who eats them. Needless to say, I'm a little rounder today than I was a week ago, as I've probably gained about three or four pounds.

I'll let you know how that "nice medicine" works out in early December...


13 more!

Still my favorite ride at Kings Island!

My pumpkin looked fabulous.

This was from my clinic visit at the beginning of October. As you can tell, I really like my letter!

The wig's cute, but it didn't last long at all...


I didn't want to sit still for pics on Halloween, but Mommy managed to snap this one.

And this one... But why would I want to cover up my beautiful hair with a wig?

We got to go back to Shaw Pumpkin Farm this year. I sure missed it last fall.

Me and my llama.

I had my clinic visit at the Liberty Campus yesterday, and though it really stinks to have my port accessed, Nurse Pam was awesome! She suggested that they wait to put the needle in until they had the chemo ready; that way, they wouldn't have to tape the needle down and remove all of the tape when they were finished. It worked out pretty well. I screamed for the five minutes that Mommy and the nurse held me down and injected my chemo, and I hit Mommy twice after they removed the needle, but I recovered within two minutes. Everyone told me how brave I was, and I agreed. I then repeated that I was brave and turned to Mommy and asked, "What's brave mean?"

By the way, I'm doing great right now! I'm feeling good, I've been full of energy, and (knock on wood, but...) I haven't been sick. Lily had the H1N1, but I somehow avoided it. I've also gained a little weight, gotten a bit taller, my hair has grown a TON (it's actually pretty crazy hair now), and I'm getting stronger each day. I love going to physical therapy every other week with Miss Tracie, and Mommy and Daddy are seeing improvements in the strength on my left side.

I'm including some of my latest pics. It was great to be out of the hospital for Halloween this year, and I loved trick-or-treating. It's hard to believe that it has been just over a year since I was diagnosed. In some ways, I feel like it was just yesterday, and in other ways, it seems like this has been all I've known for so long. Here's hoping that the next thirteen months fly by...
Oh, and if you haven't checked out my videos from the last post, do it! You'll really enjoy them, but you won't be able to get "Dancing Queen" out of your mind.



Only 14 more!

I had chemo on Monday morning, and they're getting a little quicker at the Liberty campus of Children's. We got there at 8:30, and we were heading home by 11:00 - not too bad compared to the clinic at the main campus. It's also a little closer, and parking is a breeze.

I must say that I am definitely not a fan of my new port while it is being accessed and de-accessed. I know I said how much easier it is, how much I love swimming and taking baths, how grateful I am that I don't have dressing changes once a month... blah, blah, blah (my newest favorite phrase). I realize I said all of that, but getting a big L-shaped needle shoved into my port (which is under my skin right below my left nipple) is no picnic. Even with the emla cream, which is supposed to numb my skin, it really hurts! It was also uncomfortable for me overnight on Sunday, because after accessing my port with the big yellow needle and taping the needle and tube down with Tegaderm HP and Hypafix tape, it stuck out from my chest and made it difficult for me to sleep. Then, after they gave me my chemo on Monday, they removed the Tegaderm, tape, and needle while Mommy had to hold me. Needless to say, I loudly voiced my displeasure and discomfort.

Have I mentioned lately how much cancer sucks?! I overheard Mommy on the weekend talking to her friend Meg. Apparently, her older sister Mary Beth (50) was just last week diagnosed with ALL, like me. Please join me in saying some extra prayers for her so that she can be strong and continue to fight just like I am doing! She is starting her induction phase, so she'll be getting chemo and steroids (which I know is very rough). Hang in there, Mary Beth - you can do it!

The good news? Well, my counts are fabulous right now, which means my body is doing what it needs to. Unfortunately, the doctors want them to stay within a certain range, not having them go too high or too low. So... as a result of my high counts, they are increasing my dose of Methotrexate to six pills (over the last few weeks I took five once a week, and the month before I only took four once a week) so that my counts go down more. I hope they don't drop too much. There are way too many bugs going around, and if my immune system bottoms out, I might catch something and land myself in the hospital.

Please pray for my counts to stay within the desired range, the bugs and specifically swine flu to stay away, the health of all the kids and families on A5S at Children's, and Mary Beth. Love to you all!


Quick Update

I painted my face at Totter's Otterville during Lily's birthday party.

Daddy and I rode the trolley together, while Lily rode with her friends.

I made a crib for myself in the family room.

Cheese... look at all of my hair!

Lily tried to teach me how to shake my pom poms...

The swiper ride... my absolute favorite at Kings Island!

Too much shaking of the pom poms!

Well, I didn't get kicked out of Goddard, but I'm not going there any longer. Daddy and Mommy were getting freaked out about me being in a daycare setting with H1N1 and lots of other bugs that could prove deadly for me floating around. They were also tired of packing Lily and me up each morning with breakfasts and lunches (no peanut butter, either!) and rushing to get us to school so that Mommy could be on-time for work. They have hired a new nanny to care for Lily and me, but Lily will continue to go to Kindergarten in the afternoons, taking the bus from our house and home again.

It took me a little while, but I actually had fun going to school. I made lots of friends at Goddard, and I've already had my first (and second, and third...) kiss(es). Miss Stephanie told Mommy that I had kissed Ethan ("my boy," as I call him) from my class at Goddard, and Mommy asked me why I had kissed him. I told her, "Because I wanted to." He is really cute; blond spiky hair like mine, big brown eyes, and the class clown... They say you fall for guys like your daddy, but it's kind of ridiculous that my first "boy" even has the same name as my daddy!

Let's see... what fun things have we been doing? Since I last wrote to you, we have celebrated Lily's birthday (see a couple of pics above), started school (Lily's in kindergarten), finished swim lessons, rode rides at Coney Island, visited Kings Island, played games at Dave and Busters, gone to Boo Fest with Nanna B. and Poppa, and a few other things. In essence, I'm getting back to being a typical toddler.

I now just have to take chemo (Mercaptopurine - orally) each night, Methotrexate (another chemo orally) once a week, steroids for five days every 28 days, and we visit the Liberty Township clinic once a month for chemo (Vincristine) that I get through my port. I really don't like it when they access my port... it's pretty painful to have that big needle sticking into my chest. But, once they do what they need to, they de-access the port, and then I can swim, bathe, and not worry about anything dangling from my chest. I love having this new Ariel! Other than the things I mentioned above, every third month, instead of going to the Liberty Campus, I have to go to the main campus of Childrens to have a lumbar puncture with intrathecal methotrexate as well getting my Vincristine (I had this done on September 15).

I'll be starting physical therapy at the Mason Campus on October 27th, and I'll go every other week. I was evaluated after my limping this summer, and they determined that I indeed am delayed in my gross motor development. I guess that's to be expected when you lay around for a long time in the hospital, and continually get chemo that causes leg pain and weakening of muscles...

The good news... Mommy just counted, and I will only have fifteen more months of treatment! While that sounds like a long time, and I was just diagnosed a year ago (on October 19th), the time is going really fast now that I'm in maintenance. December 17, 2010, is my end date for treatment, so please pray that I can make it there without incident or recurrence.

Sorry it's taken me so long to update you, but trying to get Mommy to write these days is difficult! Since I can't type on my own yet, I'm pretty much reliant upon her. I'll attempt to get her to update you more frequently, but you can tell I'm doing better when she is NOT writing as much.

Love to you all, and thank you for your continuing prayers for me and my family. I hope you stay healthy and are able to enjoy the fun fall activities and change in weather... I know I plan to!


So this is summer...

I love scaring everyone (especially doctors and nurses) with my purple vampire teeth. Arrrrr, arrrrrrrrrrrrrrr...

My first tub frolic in about ten months

I still love the Swiper ride at Kings Island the best of all!

Check out all of my hair!

My new port (which I call my "new Ariel") totally rocks! My old (Broviac) central line was an external line with a cap on the end that allowed me to receive chemo and have blood taken without being poked. The nurses could just hook into the cap, and I didn't feel a thing. The problem was that if the external dressing got wet, we would need to change the dressing to prevent infection. They make these things called "AquaGuards," which we tried to use, but they don't keep out the water very well at all. Someone needs to invent something for kids who have central lines, so that they can swim and bathe, too... Another bad thing about the central line was the dressing changes once a week (sometimes more), since Mommy or Daddy needed to pin me down screaming while the other one ripped the dressing off, cleaned the area, waited for it to dry, then applied a new dressing. The whole ordeal lasted about 45 minutes each week.

With my port, I don't need to have my Ariel flushed each day, Mommy and Daddy don't have to worry about someone/something pulling on my line, we don't have once a week dressing changes, and I can swim and take baths all I want! My new Ariel (port) is under the skin on my chest, which makes a very watertight bandage that doesn't need to be changed each week. The downside is something I experienced yesterday and today, though. When they need to access the port, a BIG needle is poked through the skin on my chest into the port, and a dressing is placed over the needle and part of the tube to hold it in place. Nurse Julia missed the first time yesterday, so I got poked twice. I didn't like being pinned down while she poked me or when the dressing was removed after my Vincristine infusion today, but Mommy and Daddy say that five minutes of screaming once a month is better than 45 minutes each week. I totally agree, and besides that... I can swim now!!!

All summer long, Mommy, Daddy, and Lily have been trying to keep me out of water, and since I got my port placed on July 29th, I've enjoyed being submerged in some type of water every single day. I even started swim lessons last week, and I'm swimming along fabulously.

I'm feeling great, in case you were wondering. My hair continues to grow back, and I'm acting like a normal three year old (unfortunately for my mom and dad). I'm full of energy, attitude, singing, and dancing, and I've been making lots of people smile and laugh with my words and actions. I have quite the personality!

Mommy and Daddy had a little scare last week, though. I started limping again, and they were worried because that's what clued them into the fact that something was originally wrong last October. Mommy was petrified that some leukemia cells were back, which made Daddy go pale thinking about it. We went into the clinic on Thursday and saw Dr. Raj and Diane, my nurse practitioner. They watched me walk for popsicles and agreed that I was definitely limping. Next they tickled my legs all over to check for acute pain, but I didn't have any. The two agreed that the limp was probably due to some muscle shortening and lengthening from the cumulative effects of chemo and steroids, even though the timing seemed off. The doctor called for some x-rays to be safe, and Diane was going to work on setting up some physical therapy for me so that we can ensure there isn't any damage from the hobbling. The x-rays didn't show any bone or fluid issues, and my blood test from Sunday didn't show anything. Dr. Absalon didn't seem really concerned about it at my clinic visit this morning, so I think Mommy feels a little less scared.

The next time I go to the clinic, it will be for a lumbar puncture and intrathecal Methotrexate on September 15. It's so nice to only have to go to the clinic once a month now, although I really miss all of the nice doctors, nurses, and other support staff at Children's Hospital. It's amazing that I do NOT despise going to the hospital! Usually, I don't want to leave, and that says something for the people that work there and take care of me.
Please pray for Mommy, Daddy, and Ms. Julie this week. I am on steroids again, and I am super mean. It's incredible how my body can remember with only one dose of Dexamethasone how nasty and indecisive I am supposed to be. At swim lessons tonight, I was throwing the swim ring at Mommy's face, splashing her on purpose, hitting her, and screaming while laughing. While this seems like normal toddler behavior for some kids, I'm actually very sweet and didn't do these things last week during swim class. Hopefully, the Clonadine prescription that Mommy had filled tonight will help to keep me from being so agitated and mean. Mommy's worried that I'll get kicked out of Goddard during my first week there. I'm excited about starting school tomorrow, but we'll see...



My little cousin Ricky... I love his hair!
My Stella playing with beads and me

Papa and I making yet another trip to fill up my bucket

Lily loved the sand and water

As I said above...

Lily and Rachel waiting in line for the Big Bad Wolf

I wonder what five year olds chat about...

I'm pretty cute!


What fun!

I wanted to jump off the pier into the water 40 feet below, but Mommy held onto my dress with a death grip. Papa was nervous the whole time.

Mommy took this pic before the ride started (when I still liked the ride)

Emma and I cruised in the shiny red convertible

Daddy got a workout hauling me around

I got to blow out a candle on another cake on my actual birthday
This was the first of five times that I rode the boats at Busch Gardens

Sorry I haven't updated you in a while, but this maintenance phase is keeping us quite busy. The good news is that I made it! I'm finally in the last phase of my treatment. Maintenance is something that everyone has been talking about favorably since my treatment began last October, and it will last for a year and a half (until December 17, 2010).

A brief recap of what's been happening with me health-wise:
  • June 23 was day 1 of maintenance, and since my counts were surprisingly quite high, they gave me a lumbar puncture (spinal tap) with intrathecal Methotrexate and IV Vincristine. I'll get this once every three months. The goal is to keep my counts within a certain range… if they get too high, they give me more chemo, if the counts take a dive below 500, they back off the chemo.
  • I'm getting a five-day "spurt" of Dexamethasone once a month now. In case you don't remember, this was the drug that I took for the first 30 days of my inpatient stay at Children's. The Dex made me eat everything in sight at all hours of the day and night, resulting in about nine pounds of weight gain (a lot, considering it was about a third of what I weighed at the time). The more difficult side effect was the extreme mood swings and the resulting inability to make up my mind. Mommy and Daddy were ready to pull their hair out within a few days. Luckily, I'll only be getting the Dex for five days at a time, so the side effects aren't supposed to be as bad as they were during my initial hospitalization. I started the first course of it on June 23 with my other drugs, and the second course begins next week. The first five-day spurt could have gone better, mostly because I really despise the taste of the Dex and cannot make up my mind when I'm on it. Mommy tried mixing the "yucky medicine," as I call it, with all different things so that I wouldn't taste it. All it did was make me not want to take any of my medicines. Pray for Mommy, Daddy, and Lily to have patience with me next week...
  • Since the beginning of this phase, and until the end, I will be taking 9ml of 6MP (Mercaptopurine) every evening orally before bed. This is chemo I've taken before, and luckily it tastes good to me. I lovingly call it "the yummy one" and "my chemo." Mommy has decided that “chemo” really should not be in the vocabulary of a three year old.
  • A new oral medication that I’ll be taking once a week is Methotrexate in pill form. This poses a problem, since I don’t swallow pills. Mommy’s been crushing it, mixing it with a tiny bit of water, then adding some chocolate syrup and sucking it up in a syringe. I also call this the “yucky one,” but as long as I can take the yummy one before it and drink some juice afterward, I do okay with it. At least it’s only once a week.
  • My Ariel (the name I have for my central line) has really been getting in the way of me having a good summer. Mommy and Daddy have decided that a port (Mediport) will be a better option for me now that they only access the central line for medication once a month. The port is under the skin, doesn’t need to have a dressing over it (meaning no dressing changes!), doesn’t need to be flushed once a day, and I’d be able to swim and take baths as much as I want. Though I will need to get poked when they give me chemo and take blood, a couple minutes of screaming once a month is much better than 20+ minutes of screaming once a week and avoiding water like the plague.
  • They’ve scheduled surgery to remove my central line and place my port for July 29 at 1pm. Let’s hope all goes well so that I can still enjoy some of the summer! I’ll have 2.5 weeks of healing time before they need to access the port, which is definitely a good thing.

Fun happenings in my life:

  • We’ve visited Kings Island a few times, and Nanna B. even joined us once. My favorite rides are the kiddie carousel (I can ride it ten times in a row!) and the Swiper ride. I thought the Scrambler was cool, but I didn’t want to do it again.
  • My hair is growing back! Every day it sprouts some more, and it’s even sticking up occasionally. It’s really soft. I know this because everyone wants to rub my head and tell me how soft it is.
  • Mommy and I went to see the Dora Live! show at the Aranoff at the end of June. Aunt Renee got us tickets (thank you, Aunt Renee!), and it was so much fun to have an evening with Mommy in the city. I thoroughly enjoyed the music and waving my star on a stick around when Dora asked me to.
  • We have a new addition to our family. Stella is our adorable, black three-month-old kitten with white paws and a white neck and tummy. I call her “my Stella” and ask “Where’s my Stella?” and “Where’d my Stella go?” Lily has claimed her as her own pet, but I think she enjoys playing with me, too.
  • I’m three years old now! I had a blast at the birthday party at my house on the 4th of July. I was able to see and play with lots of people who I love (Great Nanna even made the trip in from Charleston!), and I couldn’t wait for my Dora cake. We went over to Kenlie, Kaylee, and Katelyn’s house after the party to watch the guys play with firecrackers and fireworks. I had a good time playing with Kenlie’s toys, and I surely wasn’t ready to go home for bed. But…
  • Mommy, Lily, and I left for vacation at 4am the morning after my party. Nana and Papa met us at our house, we all hopped in Mommy’s loaded-up car with turtle top, and we drove to Myrtle Beach. We arrived at the condo at check-in time (4pm), just after I yelled, “Get me out!” Mommy was hoping I would be afraid of the ocean again (so that my Ariel wouldn’t get wet), but she had no such luck. She had to change my dressing that evening after my trip to the beach, a dip in the pool, and a soak in the tub. Nana held me down, and I saw tears in her eyes as I screamed and pleaded with her to let me go. Mommy didn’t so much look like she was enjoying herself either… Good thing we’re looking into a port.
    We stayed in the condo for three nights, and we visited Lily’s friend Emma’s house on my actual birthday (July 7th) for a fabulous birthday dinner and cake. Emma’s mommy Kara is so wonderful! She had lots of toys to entertain us, made a great dinner, and even gave me a singing Dora card and gift. What’s even better was that she invited all of us to stay with her the next night so that we didn’t have to make our trip to Ocracoke, for which we would drive for six hours take a 2 ½ hour ferry to the beach, be without a hotel for several hours, then do the same thing (in reverse) the next day. None of us was looking forward to making the trip, so the extra time of fun and relaxation at Myrtle Beach with Kara and Emma was really appreciated. Both Emma and Kara were such good hostesses; it was so nice of them to share their quiet time, home, toys, food, and company with us. Lily and I even took our first ride in a convertible! I will surely need one of those when I get older…
  • Upon leaving Myrtle Beach on Thursday afternoon, we headed for Williamsburg, VA. There we met Aunt Louisa, Rachel, and little Ricky at a different condo. We kids had a wonderful time chasing each other around until around 11pm that night, and then Mommy, Lily, Rachel, and I all slept in the same room. Donning lots of sunscreen, we ventured out to Busch Gardens Europe the next day. I rode a few rides, and Lily rode her first really big roller coaster. It was called the “Big Bad Wolf,” she loved it, and now she doesn’t want to ride any of the slow rides. Mommy’s worried that she’s hooked now. Mommy and Nana went back to the park in the evening and rode (really fun) roller coasters while Aunt Louisa and Papa took care of us kids. The next day, I got to go to a couple of playgrounds with Papa and Aunt Louisa, and Lily and Rachel went to the waterpark with Nana and Mommy. I really would have loved to go! Maybe we’ll head back sometime after I get my port. Uncle Rick and Daise (Rachel and Ricky’s au pair) came in that afternoon, and we played putt-putt that evening. I wasn’t so into taking turns hitting a little ball with a stick, so I dragged Mommy to the playground instead. All in all, it was a fun trip, but we were glad to get home to Daddy and Stella.
  • Since I’m in maintenance, I’m allowed to go back to school. Mommy’s registering me at Goddard, and I’ll be in the Creative Crickets room with Ms. Julie starting mid-August! Lily absolutely loved having her, and I think I will, too.

I’ll try to get Mommy to update you again soon. Until then, please continue to think positive thoughts for me and pray for my friends Leah and Liz, as well as all the other kids on A5 South.


Increasing tolerance

No, I'm not talking about alcohol, but something even more deadly! My tolerance for the steadily increasing doses of Methotrexate (AKA mean chemo) has increased a ton since my first interim maintenance (IM) phase of treatment. During IM #1, they were only able to give me three doses of Methotrexate before they had to cut it off because my counts were too low. Right now (in IM #2), I already received dose number four, and they'll be giving me number five tomorrow morning. Mommy was pretty sure that I wouldn't be getting it tomorrow, because on Thursday, my ANC was only 300. In order to get the dose, it needs to be over 1000, and my platelets need to be over 100K. The surprising thing was that my ANC was 1190 and platelets were 392K today!

Though this is good news in that it means I am tolerating the chemo very well, it is bad because I will get both Vincristine and (a really BIG dose of) Methotrexate through my central line tomorrow. This will dramatically drop my counts by the weekend or early next week, so I'll be feeling yucky again and needing to wear a mask when in public places.

My appetite just started picking up again over the weekend. I hadn't been eating very much since my last dose of chemo on the 29th. Things don't taste so good to me, although I do love pink Gogurt. I've lost some weight lately (13.6 kg - 29.92 lbs. - today, which is still less than my starting weight in October), and everyone keeps asking me what I want to eat when I tell them I'm hungry. I reply, "I don't know," and then repeat, "I'm hungry." Mommy and Daddy are getting a little frustrated, but I can't help it.

My hair is growing back! I wore a couple of little tiny barrettes and a bow today, and I can't wait to wear a "purple pony." That's my dream. My hair was actually sticking up yesterday... I like having that "problem" again.

I'm feeling great right now, though, and that's what's important. Mommy and Daddy are catching me running, dancing, singing, and playing constantly. I don't want to lie around at all, and I am loving playing with Kalee and Katelyn next door. Everyone is shocked at my energy, but I've been saving it up. I'm also working on potty training and even sported my big girl Dora panties most of the day. Dora was "happy" (I stayed dry) until Mommy got home, and I even stayed dry through naptime. Unfortunately, I had to apologize to Dora for turning her yellow before dinner and brown after dinner, though...


Being a toddler

Kalee and me playing in the water

We covered my Ariel (central line) with a big sticker, so that I could play in the water a little

Best buddies - Katelyn and Lily

Twinkle toes


My big cousin Mason loves the feel of my head, too

Sorry I haven't written in a while, but I've been SUPER busy! Mommy says I must be feeling terrific, because I'm really acting like a toddler (running around, hiding when it's time for a diaper change, not wanting to share, hitting other kids and adults, and throwing tantrums). My counts were excellent on Monday (ANC of 3610, platelets of 360K, and HGB of 11.2), so I was good to go for my chemo on Tuesday. They gave me the biggest dose I've received so far of IV Methotrexate as well as my dose of Vincristine, and we're hoping I can handle it well.

Good news... my hair is growing back! It's amazing how fast it is growing, and everyone keeps commenting on how cute I look. Mommy's missing rubbing my bald head a little, but the fuzz that is growing back is pretty soft, too. The fact that I'm not bald anymore is surely not stopping Mommy from petting my melon. I’ve been telling Mommy and Daddy that I want "pink ponies" in my hair when it grows back.

On another note, Lily and I have made some new friends lately. Holly, our new babysitter, eased into watching us last week, and the transition has gone very smoothly. She won Lily over when she brought her kit of nail polishes and we played "nail salon." It didn't even take that much for me... I fell in love with her when she pushed me in my backyard swing. We've also been enjoying spending time with our new neighbors who moved in last November. Kalee (10) and Katelyn (8) play with us almost every single night. Lily almost stalks Katelyn as she gets off the bus in the afternoon, because she can't wait to play. Kalee is my buddy, and Mommy's counting the days until Kalee is old enough to babysit me. We all went to Kings Island together last Friday night and had so much fun! Lily's favorite ride was the old Beastie (Mommy can't remember what it's really called now), and mine was the carousel (the little one). I rode it at least seven times! Katelyn and Lily even rode the Little Bill roller coaster by themselves... what daredevils.

Let’s see… other happenings:

The Butterfly Walk on May 9th was so much fun! I couldn’t believe all of the wonderful people who showed up to support me and other kids with childhood cancer. We had more than 50 people on my team (Becca’s Believers) and collected over $4,400 for pediatric cancer research. Thank you, again, to those of you who attended or supported us! I’d like to especially thank Mrs. Kelly Hundley for telling Mommy about the walk, getting all of the t-shirts, raffle tickets, and bracelets together for the team, and arranging for the third grade students at LES to adopt two trees for me (they made beautiful butterflies that were strung around two different trees in the park). She is so fabulous! We plan to participate in next year’s walk, too, so please put May 8, 2010, on your calendar.

Daddy’s work (Ivy Hills Country Club) held a benefit for me last Saturday night, and Lily and I had a blast! Lots of people golfed (getting stuck in two monsoons), and then there was a dinner with a split-the-pot, an auction, and a raffle. There was even a guy playing the guitar (who, by the way, was nice enough to donate his fees back to us), so we had live music to dance to during the event. I am so amazed at the generosity of the staff and members at Daddy’s work, and I am touched by how special and loved they made me (and the rest of my family) feel. Mr. Dan Gates (the GM at Daddy’s work) deserves a ton of recognition for heading up the entire event. Not only was he the emcee of the night, but he also presented Lily and me with flashing rings and took us around the course to see Daddy on a really fun golf cart ride.

Oh, one more thing… I’m working on potty training again. I was nearly there when I was diagnosed in October, but being in the hospital, feeling terrible, and moving an IV pole back and forth to the bathroom isn’t the easiest thing to do. Now that I’m almost in the maintenance phase, and summer’s pretty much here, we’re working on it again. I like getting “M’s” or marshmallows for going on the potty, and Lily enjoys the spoils of “helping,” too. I can't wait to be a big girl. Wish Mommy good luck in taking on my potty training this weekend!

Other than that, we’ve been just enjoying the wonderful weather. I hope you have been, too! Love to you all, and again, please keep me in your thoughts and prayers. With that said, I’m going to get back to playing…


Butterfly Walk Info

We currently have 43 members walking for my team (Becca's Believers) on Saturday morning at the Butterfly Walk! Our family is amazed and so very thankful for the support you have all given to me and CancerFree Kids. Individual and family donations, team member registrations, a bake sale by Mrs. Geiger's and Mrs. Lawrence's classes at LES, and an LMS "Pie in the Eye" fundraiser have totaled more than $3800 for our team alone!!! Think of all of the cancer research that will occur as a result...

It's not too late to be a part of this awesome event! You can still donate online (visit http://www.active.com/donate/2009Butterflywalk/beccasbelievers for details), become a virtual walker (go to http://www.active.com/donate/2009Butterflywalk/beccasbelievers, click on "Register for this Event," and register as a virtual walker) or via mail (http://butterflywalk.com/_wsn/page10.html ). If you would like to join our team in walking, you can register Saturday, but plan on getting to the park around 9am.

Directions to Cottell Park, Mason, OH (Deerfield Township)
Route 71N, exit 19 (Mason Montgomery Road NORTH). 1 Mile turn left onto Deerfield Boulevard. Deerfield Blvd becomes Irwin-Simpson Road. Cottell Park, 5847 Irwin-Simpson Road is on the left 0.7 miles from Mason-Montgomery Road.

Our team will meet at 9:30 at staging area D, where you will get your t-shirts and bracelets from Mommy and Daddy. Thank you, Mrs. Hundley, for picking them up tonight! We don't really have a team color, but Lily and I are decorating our wagon with pink and purple, and we plan on wearing lots of butterflies. You're welcome to wear whatever you want and feel comfortable wearing. If you would like to, you can decorate a wagon/stroller/wheelchair for anyone on the team that might struggle more with walking.

I get chemo tomorrow morning, and I'm hoping that I will tolerate it well. I've typically done well with the Vincristine and Methotrexate (both given intravenously). We'll find out what my counts are in the morning, and we're hoping for good ones. My hair is growing back a little (yeah!), but bald is (still) beautiful. :o)

Lily and I have been counting down the days until Saturday, and as soon as I see a butterfly (anywhere), I get a big smile on my face and say, "It's the Butterfly Walk, Mommy!" Hope to see you at the walk. Go, Becca's Believers, Go!


Living it up

I've had so much fun since I've been home! Though my ANC has been slow in coming up, my platelets and hemoglobin are doing well, and I'm feeling great. I've been playing outside on all of the nice days, and my appetite is picking up.

I spent this weekend with my favorite people. Saturday, we played at Nana and Papa's house and celebrated Mommy's birthday, and today we went to Nanna B. and Poppa's house (with Daddy!!!) to have brunch for Mommy's and Avery's birthdays. Daddy, Mommy, Lily, and I then went to see Sesame Street Live - When Elmo Grows Up at NKU (thanks to Aunt Renee). It was a blast! I really wanted to hug and kiss Elmo, but unfortunately, he didn't make it up to our seats. My favorite song of the night was "The Itsy, Bitsy Spider." Lily made the comment that we were a family again and that she loved us all walking together as a family. I saw Mommy and Daddy nodding their heads, and I agreed with her, too.

I was supposed to have an ultrasound on Friday (just to double-check that my liver is working correctly again), but I wouldn't hold still or be quiet, so Daddy and I left without the ultrasound.
We're scheduled to go in to Children's on Tuesday to begin my next round of chemo. This will be Interim Maintenance #2, and as long as my ANC is 1,000 and my platelets are 100,000, I'll get Vincristine and Methotrexate via my central line, as well as an intrathecal dose of Methotrexate on Tuesday. I'll go to the clinic every ten days for chemo and a physical exam, but I'm hoping that my hair will continue to grow back and that I tolerate it as well as I did the last time.

I'm tired after such a busy weekend, so I'll give you more details soon! Love to you all...


Going home anyway!

Yay! Good news... the doctors are going to let Daddy take me home today, despite the fact that my ANC is only 140. I guess they realize that I'll probably be exposed to less germs there than in the hospital, so my chance of infection is a little smaller. Either that, or they're just tired of having me climb the hospital walls...

It's a wonderful day! Thank you for your prayers.

ANC today

Ugh... it only went up to 140 this morning! I guess I'll still be here tonight. Please pray EXTRA hard tonight!


Need some prayers tonight!

As if you haven't been praying enough for me...

I need lots of prayers tonight! I'm not allowed to go home from the hospital (yes, I'm still there!) until my ANC (Absolute Neutrophil Count) is on an upward trend. In case you've forgotten, neutrophils fight infection, and a healthy person has an ANC greater than 1500. Mine was 350 on Saturday, 220 on Sunday, 120 on Monday, and 110 on Tuesday. Not exactly an "upward trend." This morning, I went up to a whopping 120! Daddy told the doctors at rounds that we were packed and ready to go, since my counts were up. They got a good chuckle out of that. Most kids need to have an ANC of 500 to leave, but they told Daddy I could go home if I got up to 200.

I REALLY want to go home, so if you can please find time tonight to pray for an ANC of 200 for me for tomorrow, that would be great. Thank you, and I'll keep you posted!


Turned the corner

I absolutely LOVE this pop-up ball game that I got from the nice ladies in the playroom! I squeal with delight as I play with it.

Daddy and I prowled the hallways a couple of nights ago with my new foamy rocket gun.

I didn't like wearing the oxygen cannula in my nose. I much preferred using it as a headband.

Okay, so everyone's saying that I've "turned the corner." I don't know what it means, but I think it's good. They smile when they say it, and I'm feeling tons better each day.

My belly has gone back down to its 2T size again, and my weight has returned to my admission weight of 13.4 kg (29.48 lbs.), down from 16.2 kg (35.64 lbs.) on April 3. I'm so glad! I really thought my tummy was going to explode last Friday (since that was where all the weight was), and that would have been kinda messy.

My counts are continuing to improve each day. My platelets and hemoglobin are sticking around, and I haven't had a transfusion since Sunday or Monday.

Here are today's numbers:

Hemoglobin - 11.7 (normal is 11.5-13.5, but they don't transfuse me until I'm below 8.0)
Platelets - 25K (normal is 135K-466K, and they will transfuse me if I go below 10K or am
actively bleeding; these actually went up a couple of thousand on their own today!)
ANC - 420 (up from yesterday's 210, but it's supposed to be low right now due to the delayed
effects of the chemo I have received this month)

Other good news... I don't have a tail anymore! Translation: I'm not hooked to an IV pole 24/7, since they're not keeping me on fluids, pain medication, or anything else right now. I'm still receiving an antibiotic through my central line, but it usually goes in when I'm sleeping, so I don't even notice it. In addition, I'm not required to be on the monitors at night (or during the day) anymore. Mommy doesn't have to jump and run over each time my heart rate or respiration goes a little too high, or my pulseox goes a little too low.

I also have acquired a new bike that has a big handle on the back for Mommy to use so that she can push me around. I look pretty adorable in my kitty cat mask, pretty nightgown, and my pink slippers on my primary-colored bike carrying Dora with bunny ears on the back. I'm getting quite good at ringing the bell when I pass people in the lobby.

I've been playing in the playroom more and more the past few days, and I have made lots of new friends there. Little Ava is a 15-month old baby who has AML; I've been working on being polite and sharing with her. Speaking of which, I don't want to be polite. That's what I keep telling Mommy and Daddy when we go out in public. When people smile at me and say "Hi," I get really embarrassed and hide my face or squeal/growl/scream at them. Daddy told me that this is not "polite," and that I should at least smile if I don't want to talk. Well, we had a fight about me not wanting to smile or be polite to anyone the other day... yes, it was a kicking and screaming fight (I did the kicking and screaming, not Daddy). I've also met Felicia, a little 18-month old girl who is bald like me. Jonathan, Nathan, and Critter are some of the boys I've met, but I don't really want to play with them too much (they ARE boys, afterall). All of these kids and their families sure need prayers. They are battling so many health problems, let alone emotional and financial issues that go along with them. Some of them are from faraway places, too, so they have to be away from their families, quit their jobs, and make many other sacrifices to get the care that we are lucky enough to have at Cincinnati Children's Hospital. When you're praying for me, please keep all of the other kids here in your thoughts, too.

Anyway, the bottom line is that we don't know when we'll be able to go home. Originally, the doctors said we would be here a couple of weeks, then we heard that it would be more like a month. I'm mending quite quickly, though. Mommy and Daddy are a little worried that now that I'm going to the playroom and out on walks more often with my ANC so low that I'll pick up a virus, which would keep us here even longer. Just try to keep me in my room, though...


A new disease...

I haven't eaten in four days, but this is my belly! I've gone from 29.5 lbs. on
Monday morning to 35.2 lbs. on Friday evening.

Looking back, I guess they DID warn us!

It's sure been a busy week, so I'll try to recap the highlights and lowlights...

Let's see... Mommy left off writing about Monday night. I have found out that they draw blood shortly after getting platelets and other blood products to test it and make sure they "stick." Apparently, when they checked my blood after the platelets, they had only gone up to 6,000 (from 4,000). They gave me more platelets, and I went up to 15,000, but my hemoglobin went down, even though they had given me blood. My nose was also continuing to bleed (likely a result of low platelets), which made me vomit.

By Tuesday night, Dr. Pope came in to explain what she thought was going on. She had reason to believe that I had developed something called Veno-Occlusive Disease (VOD) as a result of the Thioguanine (chemo) I had been taking for the last ten days or so. She gave a brief description to Mommy and Daddy (sludging problem in the liver, where it's not doing its job, and everything is backing up into the abdomen), but said that she wanted me to get an ultrasound of my liver to be sure. This would explain why my body was not holding on to the platelets and blood I had been getting, too, since my liver is chewing them up. She said that the ultrasound would show if there is a reversal of flow in the portal vein, which is a primary characteristic of VOD. Dr. Pope also told us that they would start me on Lasix (a diuretic) and Actigall (a bile acid that decreases the amount of cholesterol produced by the liver and absorbed by the intestines). Key point: the VOD is reversible!

Here's a blurb Mommy found on the Internet about VOD:
"Veno-occlusive disease is a potentially serious liver problem caused by high doses of particular chemotherapy. In patients with VOD, the blood vessels that carry blood through the liver become swollen and obstructed. This impairs the liver's ability to remove toxins, drugs and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness of the liver. The kidneys may retain excess water and salt, causing fluid to build up in the body and swelling of the legs, arms and abdomen to occur."

I won't go into detail about the ultrasound, except to say that it was a long, horrible experience that I don't want to repeat. We actually ended up having two different technicians trying to "capture the essence" of my liver on film before the real radiologist came in and found the reversal of flow that Dr. Pope mentioned.

That night lasted forever! I got a new anti-nausea medication called Ativan, as well as morphine for the pain. Everyone thought I'd be "out cold" in a few minutes after taking them, but I showed them! Nurse Kelly gave me some packed red blood cells, which were like a slow charge on my battery for the next four hours. During that time, I also vomited four times and had a bloody nose. I didn't go to sleep until they unhooked me around 3am. Needless to say, Daddy and I were pretty tired Wednesday morning.

My platelet and hemoglobin counts have gone up (yay!) and down (boo!) all week. For example, from March 30 until April 3, these have been my platelet counts:
You'll notice that they are now taking my blood for CBCs twice a day, plus another renal/electrolytes panel during the day, resulting in about four pages of lab results each day. When I get below 10K or am bleeding, their plan is to give me more platelets. My hemoglobin keeps going down, too, but not as dramatically. Anytime I get below 8, they do a transfusion.

Mommy stayed with me last night, and Daddy went to work. These nice ladies came by right as I went to sleep to take an x-ray of my chest, to make sure I wasn't getting pneumonia. Overnight, the resident started me on another antibiotic (Vancomycin), because she thought there was fluid in my upper right lung. Because my ever-expanding belly was making me so uncomfortable and the morphine was making me itch, Dr. Wagner switched my pain medication to something called Dilaudid. It did the trick, and I drifted off to sleep pretty quickly.

Unfortunately, Mommy got a little scared overnight with the necessity of the chest x-ray combined with the alarms going off throughout the night. My PulseOx (oxygen saturation of my blood) kept dipping during the night, so they put this cannula thing in my nose and turned on some oxygen. I didn't like it, but it kept that alarm from going off. In addition, my heart rate persisted in spiking, indicating that I was tachycardic. The third alarm that continued to sound was the one that showed my respiratory rate. I was having difficulty breathing, because my abdomen was putting so much pressure on my lungs and crunching everything.

That brings me to today. Let's just say that I slept virtually all day. I woke occasionally for 10-15 minutes, and I sat up a few times, but other than that I slept. Mommy and Daddy are hoping that my body is healing itself, but a major part of it is the Dilaudid that's making me sleepy. When it wears off, I'm so uncomfortable with the pressure in my belly that I cannot stand it. Mommy and Daddy think it's better that I'm not in pain, since the pain medication will not hurt me.

At one point I woke up to hear Mommy freaking out to Daddy on the phone. Apparently, she had done some research on the Internet (a "no-no" in this place), and saw some of the statistics and research for VOD. The problem was that most of the research out there is for bone marrow transplant patients who develop VOD, which is different than my VOD (my liver was perfectly healthy before this whole thing).

During rounds, the doctors talked for a long time. They said that they weren't sure if I had really developed pneumonia (the x-ray wasn't clear enough because my belly was in the way), so Dr. Pope switched the orders so that I would get Azithromycin instead of the Vancomycin. Evidently, Vancomycin is harder on the liver, and we don't need that! They also planned to give me Vitamin K (through my central line) and another diuretic (called Aldactone) which will hopefully work together with the Lasix to help me "pee off" some of the fluid build up. The Lasix hasn't been working, so we're praying for some relief with the combination and increase in Lasix. The good news of the day is that my bilirubin level (1.1) actually went down from yesterday (1.8). Dr. Wagner was saying that this level would probably go a lot higher at its peak, and then it would start going down again.

After rounds, Dr. Pope and Dr. Wagner came by and clarified some things, allaying both Mommy's and Daddy's fears a bit. Dr. Absalon also stopped in to touch base, and Mommy and Daddy were quite appreciative. He told us that kids who develop VOD on our floor (not on the BMT side) are inpatient for about a month. So, maybe we'll get to go home for Mommy's birthday!

I did have a lot of visitors today... Nanna B., Aunt Renee, Nana, and Uncle John all came to see me at different times. I wasn't the best hostess, but I think they understand.

Tonight I'm getting both platelets and blood, and I'm sleeping right now. Isn't it cool how I can somehow write in my sleep?! I'm looking forward to a good day tomorrow... a day filled with fluids going away, a lower weight, a venturing out of the room, and my body on the mend. Please pray for me and all of the other kids here on A5S who are battling with struggles similar to my own!