2.28.2009

Struggling a bit...

Lily and I are only allowed to tap dance on the tiles by the fireplace, so here we are!

Need I say more?!

Well, I have to say that this is the worst I have felt in a long time! Usually, when someone asks me how I'm feeling, I say, "Good." Even when I haven't felt at the top of my game, I've still replied that way; starting Friday, I began responding, "Bad." This phase of chemo is really throwing me for a loop.
I'm having stomach issues, cannot get comfortable, am really irritable, don't know what I want, refuse my medicines, don't feel like eating, and I'm losing too much weight. I think my moaning is upsetting Mommy, because she keeps looking at me pitifully and says, "I'm so sorry, sweet pea." I really don't know why she's apologizing.

Even though I'm on steroids again, I'm below the weight at which I entered the hospital in mid-October. My ANC was down around 600 on Thursday, so I'm sure it's down even more after the chemo I got on Friday (Vincristine and Doxorubicin). I've done fine with the Vincristine (in general) over the last five months, so it must be the Doxorubicin that's messing with me. It does have the nicknames of "red devil" and "red death," after all... I guess Mommy and I need to just plan on cuddling on the couch all day Saturday when I get chemo on Friday, because that's what I want/need.

I saw Dr. Hummel on Friday in the clinic, and he explained to Daddy that this delayed intensification phase is all about knocking me down and building me up again, just so they can knock me down again. Right now, they're obviously knocking me down, then I'm going to get a break from chemo for the next two weeks. I'll still be on steroids next week, though. This will hopefully bring my counts back up, since they are going to admit me to the hospital on Friday, the 13th (of March), so that they can really hit me hard with a chemo cocktail again.

They'll be giving me AraC (Cytarabine), which I haven't had since the first week I was in the hospital back in October, and Thioguanine, a new (to me) type of oral chemo. I'll have four days of AraC with Thioguanine, three days of just Thioguanine, four days of both again, and then three days of Thioguanine. Starting on the 27th, it looks like I won't be getting chemo for about two weeks. If my counts are high enough, I'll start Interim Maintenance Round #2 on April 10.

Thank you to all of you who are continuing to think of me and pray for my strength through this rough phase of treatment. Keep the positive energy and prayers coming!

They say that March comes in like a lion and out like a lamb, and I sure hope that's true...

2.15.2009

Back into the storm

Well, Mommy, Daddy, and I were spoiled in the last phase, and we kind of got accustomed to me acting like a "normal" child. Everybody had been commenting that I didn't look sick, and honestly, I didn't feel that sick. I had actually managed to not get a virus or bacterial infection since the beginning of December either! Mommy's convinced that we were in the eye of the storm (whatever that means).


The violent storm started up again on Friday the 13th. We had to be at the clinic at 6:30am, so I had to get up at 5:45 to leave (more than three hours earlier than I usually get up). I had a lumbar puncture (spinal tap), and they injected Methotrexate (chemo #1 for the day) into my spinal fluid. After waking up abruptly and acting rather drunk, I ate some waffle sticks with syrup and tater tots. They then gave me some Zofran (for nausea), Vincristine (chemo #2), and a new, red drug Doxorubicin (chemo #3) through my central line.


I didn't get to see my normal doctor, Dr. Absalon, because they said he got tied up somewhere else. Instead, we saw Dr. Wagner, who had done my LP that morning. He explained that the phase we are starting is called "delayed intensification," and it will not be fun, which Mommy and Daddy had gathered by looking at the calendar. He said that my counts would severely drop, and that this is typically the phase that lands patients back in the hospital for 7-14 day stays. The chemo will cause me to be immunocompromised, which means I will be really susceptible to catching viruses and infections. I will also lose all of my hair again (it had just started to grow back a little). I guess I'll have to wait a little longer for pony tails and bows.


We left the hospital armed with four different prescriptions, which we were told that we could fill at our normal pharmacy. Long story short, it turned out that our pharmacy couldn't fill the most important prescription (Dexamethasone - the steroid I was on during the induction phase) or any of the others. Daddy and Mommy arranged to have them filled at Children's Hospital's Pharmacy, and then Nanna B. was nice enough to pick it up and deliver it to our house Friday evening so that I could at least get my evening dose. The bonus was that I got to see my Nanna B.! I sure don't like the taste of that medicine, though... I was sad to find out that Lily was going to spend the night at Nanna B.'s without me.


The next morning, Mommy and Daddy loaded me up with my medicines, Daddy went to work, and Mommy and I headed out to Target to buy some new sippy cups. I wanted a pink Ariel one. We used to have one, but the dishwasher must have eaten it. Unfortunately, we didn't even make it to the checkout line before I told Mommy that my tummy hurt and puked all over myself and the cart. Needless to say, Mommy and I were both pretty shaken, and we bolted home as quickly as we could without said sippy cups.

The rest of the day was a blur (I am on steroids, after all). I didn't feel much like playing, acted pretty loopy at times, and wanted to be held constantly. My mouth hurt and I had major issues trying to "get my poopies out" (as Mommy put it). At one point, I sat next to Mommy on the couch and just moaned and rubbed my bald head against her shoulder over and over.

Sunday was a tiny bit better. I told Mommy my tummy hurt in the morning, and she didn't hesitate to get my Zofran. Smart Mommy! I took medicines, played a little, took more medicines, watched some shows and a movie (Charlotte's Web, of course), took more medicines, and after my nap, Lily and Daddy came home with the princess sippy cups we had left in the pukey cart at Target. Okay, so maybe not the exact same sipply cups... but you get the idea. I was SO excited that I started dancing around the kitchen. Daddy and Mommy couldn't tell if I was more jazzed about Lily coming home or getting new sippy cups, but they thought it was nice that I was dancing.

Everyone, thank you for continuing to pray for me and my family. Your thoughts and prayers have helped us so much so far, and we are really going to need them in the next couple of months. Here's what we need to hope/pray for:
  1. This phase of treatment will be kind to me (it hasn't been so far) and will do its work
  2. My counts remain at decent levels so that we can stay on track with my protocol (so far so good - my ANC was almost 3000 on Monday!)
  3. Mommy, Daddy, and Lily can be patient with me as my "roid rage" and massive irritability manifest themselves in a variety of ways
  4. I don't catch any bugs that will result in an inpatient hospital stay (I want to be the first leukemia patient that makes it through this phase of treatment without an inpatient stay!)

Love to you all... I will update you again soon.

2.04.2009

A little break

Lily and I are matching jammie girls

I kept saying, "It's snowing!" while throwing snow up in the air. This was one of our four snow days last week. We liked having Mommy home with us!

Self-portraits with Mommy on SuperBowl Sunday


Another snow day pic, obviously taken before I wiped my cold, snow-covered mittens on my face and wanted to go in immediately

I love my Bengals wear, even though I know they didn't even come close to being in the SuperBowl

Good news came yesterday! Mommy got a call from Mary, our care coordinator, who told her that my counts are what the doctor expected. Though my ANC is borderline (550), my platelets, white blood cell count, and hemoglobin are doing fine. Because of this, I found out that I have a break from the clinic this week and most of next week. Mommy couldn't believe it!

As long as I don't get a fever, cold, or anything else resembling a bug, and my counts are decent next Wednesday, I will start the delayed intensification phase next Friday (the 13th... ack!). It's likely that I won't be going too many places with lots of people in the next week and a half, just to make sure that I don't catch anything. Please don't take it personally, I'm really not trying to be antisocial... I just want to move forward.

I thought you'd get at kick out of some of my latest pics and a video, too. I hope you like them. Please continue to pray for me! Your positive thoughts and prayers have helped me so much already, and I'm getting ready to face what Mommy and Daddy think will be a really rough couple of months. Love to all of you...

video

You can tell that Lily's dance classes are paying off (for both of us)... she seems to need a longer leotard, though.