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tina (Moderator ?)
tina has 75 days to go and is now in week 29
Age: 23
Country: US
Province/region: Ohio
City: Delaware
Partner: Wombat AKA Mark
Children: Yes, 3
Pregnant: Yes
Due date: 04 Feb ,2009
Occupation: sahm wannabe pastry chef
Online: 7 days ago.
Last updated: 32 days ago.
Member since: 767 days
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01-8-2008 - Bummed ughMy mood while writing this blog:
ugh



Ian was FINALLY able to begin his at home chemo 2 weeks ago. After much waiting for his white blood count to come up, last week was his first "Friday Methotrexate". He only gets a half of a pill of 6 Mercaptopurine every night and then every Friday he gets 2 pills of Methotrexate. So tomorrow will only mark his second Methotrexate dose.
We had his CBC drawn today and I got the call from his nurse (I've grown rather close to Mary in the past year and I know her tone of voice when something isn't "quite right"). She said his White blood count was 2.4 She spoke with the head hematologist/oncologist who said that he wanted for Ian to continue with his normal chemotherapy schedule until his counts become so low that we cannot possibly continue.
While I have hope that we will be able to continue and that his counts won't drastically drop, I also have done this so much that I understand that while that's a nice dream, it's just not going to be a reality. I know his counts will drop, I am just in hopes that the doctors will do WHAT I WANT for once and allow me to give him the Neupogen shot which boosts his Neutrophils which manufacture white blood cells.
For now, this is where we sit. I am hoping that this doesn't land Ian in the hospital with fever and neutropenia.
I hate this disease so much! I sometimes feel as though this has only made our family stronger; but at other times I just feel like screaming about the injustice that has been done to my little boy and to my family. I'm so ANGRY that his babyhood has been stolen from him and that we couldn't just enjoy watching him grow. Rather, we studied his growth, reported any abnormalities, watched his reactions to this drug and that, administered this and that drug, read about his procedures, etc. We weren't allowed just to be mom and dad. And how sad is it that when you drop your two year old off to day care that she says "Bye mommy and Ian, you go get chemos now".
I'm so mad that when I finally feel like things are going well and things are looking up, something happens to ruin that for me. I'm mad that our lives are uncertain.
And I blew up today for the first time in a long time... at a woman at the wal-mart check out. She was in line in front of me and she was whining to the cashier that she had to pay $25 for a prescription for her son's strep throat. Ian's medical bills have topped out at $196,000!!! And it just irritated me... firstly that she would complain that she has to take care of her son who is ill when he could be MUCH MORE SICK than he actually is, and secondly because she is complaining that she has to pay for a stupid prescription that will keep him ALIVE. Some people should not have children. And she was one of them.
So anyhow, we're going to be praying for the white blood cells to pick up their end of the immune system and that Ian doesn't wind up in the hospital again. He hates living in the hospital... he can't really play because of the tubes and he can't leave his room and there's never anything good to eat. He hates it just as much as I do. The only up-side to the hospital is seeing the therapy dogs and meeting celebrities. He absolutely loved when the Red Wings came to visit. We missed Hannah Montanna because we left the hospital just before she came. But he did get to meet the world's smallest horse. Her name was Thumbelina.
Kimberly's birthday party is on Saturday so we're doing a lot of work in preparation for that. I'll be doing the cake tomorrow and then Anna will help me decorate the hall. The clown will be coming at 3:30 Saturday and then we're doing a Dora Treasure hunt, Pin the tail on Swiper, and then we're doing cake and presents and then the pinata. By then the children will be loaded with sugar and it will be time to send them all home LMAO.




1 Comments on Bummed


littlecavalier - Tuesday, 5 Aug
So sorry to read that things aren't going so well! You have every right to be angry and I am glad that you let it out every now and then! Will be praying for you, Ian and the rest of your family. Hope the b-day party went well!
Photos
Ian`s awareness banner (2008, 02, 27) Kimberly`s wild hair valentine`s day 2008 (2008, 02, 27) Anna at t-ball (2007, 06, 15)  (2008, 02, 27)  (2008, 02, 27) My personal favorite banner (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27) Ian and Kimberly 2/2008 (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27)  (2008, 02, 27) Ian during his hospital stay in April (2008, 06, 10) Kimberly at her 3rd birthday party (2008, 08, 15) Click here to see all tina`s photos

Children
Anna-Elisabeth (1999) Kimberly-Anne (2005) Ian-Andrew (2006)

Latest blogs
15-10-2008 - A beautiful productive weekend
05-10-2008 - pics. It's easier this way
05-10-2008 - Ian's second birthday was today!
04-10-2008 - An update
16-9-2008 - Woohooooo
12-9-2008 - AFP test and life in general
18-8-2008 - Ian's video
07-8-2008 - Tupperware
01-8-2008 - Bummed
26-7-2008 - Leukemia and Lymphoma Society Light the Night walk in Grand Rapids \
14-7-2008 - Ian\'s chemo on Friday
08-6-2008 - Blood transfusions for the boy and HCG levels for myself
05-6-2008 - Announcements and updates
24-4-2008 - yawn... sooo bored. Blue walls. AHAAHHH
23-4-2008 - Inpatient... again
19-4-2008 - Very sick little man
08-4-2008 - Well this is nifty!

Agenda
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