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.

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