The best part of the weekend was jumping in the leaf pile at Nana & Papa's house.
I'll let you know how that "nice medicine" works out in early December...
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.
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...
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!
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!
The swiper ride... my absolute favorite at Kings Island!
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!
I love scaring everyone (especially doctors and nurses) with my purple vampire teeth. Arrrrr, arrrrrrrrrrrrrrr...
My Stella playing with beads and me
Lily and Rachel waiting in line for the Big Bad Wolf
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
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.
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...
Best buddies - Katelyn and Lily
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…
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.
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...
It's a wonderful day! Thank you for your prayers.
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!
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...
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!