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How many 16 letter words can I spell?

With all the excitement of birthdays and holiday parties, clinic visits seem sort of bland in comparison. Monday was a long, but easy-going day. She has finished her current cycle of chemotherapy and we went in for a simple blood infusion. I keep using the term transfusion, which was pointed out to me as incorrect, she’s not having any blood taken out, just new blood put in…so, it’s infusion.

Anyways, the infusion went well and it’s put a new pep in her step. She always perks up after she gets blood, and someone asked me why, so this is the explanation I give. When she’s low on red blood cells, her body has to work extra hard to provide the needed oxygen. It uses up a lot of her energy and she starts to get tired and run down. So the added packed red cells they give her allow her body to function as it should with a proper amount of red cells and she feels all sassy and spunky. Which is fantastic….until she runs me ragged! But I’ll take ragged any day of the week.

We have an appointment to do a blood count on next Monday, just a check to make sure she won’t need more red cells or platelets before Christmas shuts down the clinic for a few days. After that, she doesn’t have chemo scheduled until the 29th! Yeah!!! We are just so excited that this break fell in a way that we could look forward to a nice Christmas break, and enjoy this time together. Please pray that she doesn’t get sick because I just don’t want to spend the holiday in the hospital…they’re nice people and all, but still.

When we start back for chemo on the 29th, Peyton will start a cycle called “Augmented Delayed Intensification”….otherwise known as “Yuck yuck and more yuck”. It’s just a crazy schedule of medications, she’s going to feel terrible and it’s probably going to be fairly trying for the whole family.

Her medication list is insane! Here’s the rundown:

Vincristine (which she gets pretty much all the time, it doesn’t do a whole lot to her but make her unable to sleep well)

Methotrexate (which is extra bad because it’s the spinal form instead of the IV form)

Peg Asperiginaise (that means two painful leg pokes at the same time, usually followed by a lot of screaming and biting)

Dexamthasone (this is the dreaded steroid…she’s going to get fat, grumpy, and depressed….mix third trimester with the worst PMS you’ve ever seen or heard of, with a dash of the movie “Sybil”….you’ve got a three year old on steroids)

Cytoxin (any medication with the word toxin in it just sounds bad, but it’s one that drags her blood counts seriously low, and we have to be very careful because it can damage the bladder)

Cyclophosphimide (we got 4 times a week for a shot either in the leg, or in the port, depending on whether or not they’ll let us keep her accessed for the whole week when her counts are really bad, it makes her feel lousy also)

Doxorubicin (this is a new one for us, it has a nickname “the Red Devil” because the color of the medication and because it turns the urine red….that should be entertaining for all of us! I’ve heard and read that it’s pretty brutal, so we’re praying for the best)

Thioguinine (this is an oral medication; I don’t know much about it, but on top of
everything else, what’s one more?)

To accent that lovely grocery list of meds will be all the stuff she’ll be on at home, Septra (an antibiotic she takes every week to fight off pneumonia), Zantac (to help her stomach through the steroids), Lactulose (because everything that goes in a three year old eating 12 meals a day has to come back out at some point and we want that to go smoothly as possibly), Zofran (to fight nausea), and Ativan (which is to help sooth the savage beast when her moods get really bad….if it doesn’t work for her, I might try taking some).

The cycle lasts 8 weeks, our nurse was pretty blunt about the fact that they don’t stop this cycle for anything les than a “serious infection”, so her blood counts and ANC will probably hit rock bottom. But we’re going to worry about that on the 29th, and enjoy the holiday!

On a bright note, Kaylie, our little 10 month old friend who was doing so poorly just a few weeks ago, is doing great according to her mother Tisha. Kaylie and Tisha were finally able to leave St. Joseph’s Cancer Clinic after spending more than 2 months there, with Kaylie eating well, feeling like a normal healthy baby again and Tisha says that she’s been enjoying her time home. Kaylie was readmitted today for her chemo treatments, but if all goes well, she’ll only be there for 4 days and then she’ll be able to go back home. Continue to pray for Tisha and Kaylie, that they will be able to feel God’s love and comfort surround them every day.

Just to keep us laughing…one of the gifts that Rachael received from the Tim Taylor family was a makeup set. It had lots of fun girly stuff, lipsticks, eye shadows, glitter. Oodles and oodles of glitter. Did I mention glitter? Sunday night we went to bed with a normal house, Monday morning Rachael got up before the rest of us and there was glitter from one end of the living room to the other, it’s permanently imbedded in the couch fabric, it’s everywhere. It looks like Timkerbell got mugged in our loving room! So, a day just can’t be bad when you look down and you have a fine dusting of pink glitter all over your clothes.

f.r.o.G…fully relying on God

2 Comments on “How many 16 letter words can I spell?”

  1. #1 Angela
    on Dec 13th, 2006 at 10:09 am

    Great news. I am glad the treatments start after Christmas. We will continue to pray Peyton stays healthly throughout.
    I also understand the glitter issue. Keep Smiling Rachael. Rosie has done the same thing. Recently!! Daddy's look great in pink (or purple) glitter too. Just not at the office. lol

    Have a great week.

  2. #2 Tami Baert
    on Dec 13th, 2006 at 7:47 pm

    Hi All!
    Wow what a list of meds .. I just wanted to let you all know that I am praying that Peyton will get through all those with little to no problems!

    I also want to comment on the what the Taylor family did for all of you! Wow!! What great people! Praise the Lord for families like these who share with others! Thank you Taylor family! Thank You Lord!

    I pray that you will have a great Christmas break together, with lots of sleep, and pajama days!:WINK, and lots of laughter!!

    Merry Christmas,