Wednesday, November 30, 2005

Ding Dong D.I. is Done

First let me wish everyone a Happy Holiday! Hope everyone had a wonderful Turkey-day.

I guess it’s high time I update this thing.

It took us 10 weeks to get through this phase instead of the mapped 8, but we are finally approaching Interim Maintenance 2 - TOMORROW!! Also 8 weeks long. This is phase five of SIX!

Yeah!!!! Although phase 6 will last 2-1/2 years, it’s wonderful to be nearing the last phase à Long Term Maintenance, a.k.a. LTM.

LTM will consist of a series of 12-week cycles. But don’t want to get ahead of ourselves. More about that as we approach it (only 8 weeks away -- Alina, I can see that light ;-)) For now IM2. Woo Hoo –

Ding Dong D.I. is gone

D.I. is gone

The wicked witch is gone!

So we made it through the dreaded Delayed Intensification. A little less hair, but no more for the wear!

That said, one thing I’d like to point out or request.


Of all the transfusions Josh has had, it’s amazing to see the difference a little blood can make J

Normal counts are:

WBC 5,000-17,000 concerns under 1000

Hgb 11.5-13.5 transfuse under 7.5 or symptomatic

Hct 35-47% transfuse under 19

Platelets 150,000-350,000 transfuse under 30,000

When Josh’s counts are down, we can tell even before the blood work. He is tired, cranky, pale (more specifically his lips turn white), just isn’t his usual self. And although I’d like to ask you all to pray for his counts to sore, the chemo is designed this way. It gets the good with the bad. In order for the leukemic cells to go, the chemo attacks anything that gets in it’s way. Including the healthy cells.

As for the platelets, they have been called “Liquid Gold”. For those of you who never knew (including me) platelets aren’t red. They are golden in color. When you donate blood, you are not donating platelets, exactly. Only a tiny bit of platelets are separated from whole blood during a standard donation. Donating platelets is a separate process, in which your blood is drawn from one arm, spun in a centrifuge that separates it from the platelets while the remaining blood is returned to you through the other arm. And to top that off, platelets have a very short shelf life of only 5 days.

When platelets are low, there is a tendency to bleed. The slightest nick can be a gusher. Even internal bleeding is a worry. When Josh’s platelets are low he isn’t allowed to brush his teeth. He has a sponge to wipe his teeth with to prevent his gums from bleeding. But since Josh has started treatment, for some unknown reason, his platelets run high. Real high. And this comes with another set of concerns. If platelets are too high, your blood is thick, and now they have to watch for clotting, as blood clots can be harmful in their own rite. They don’t know why Josh’s platelets run so high. Their only explanation is, “everyone has their own way to respond to medicine”.

Josh is B+

Jon is B+

I am O+

I am a universal donor, so both of us could give our blood to Josh if we were allowed. But we are not. We’ve already asked. In the future, if Josh ever were to need a bone marrow transplant, donating our blood now would cause him to build up a resistance. The odds of a sibling being a bone marrow match are 1 in 4. Having 4 brothers and sisters, he is almost guaranteed a match. So if he were to build an immunity to our blood, he would in turn be fighting their marrow. Does that make sense? I hope I am explaining it correctly.

So we can’t donate to Josh, but we still give blood. I remember the first time I drug Jon to the blood bank with him kicking and screaming all the way (well maybe not that bad, but I wont let him read this part). We filled out the questionnaire, and each went back to the exam rooms separately, I ended up not being able to give that day because my iron was too low. Figures. J But Jon was a trooper, and now he gives all the time. Personally I think he likes the free shirts ;-)

Holiday Greetings everyone!
. . . celebrate each day.

Monday, November 14, 2005

who said bad hair was better than no hair???

Hehehe, just had to do another quickie! Kenni has this life-like doll... scratch that, HAD

Well, it's still intact, just missing a head of hair.....

and guess who adopted it?


need I say more?

Thursday, November 3, 2005

bubbly and lighthearted

Okay, just had to do a quick [I hope] update.

I’m sure most of you have heard of the kitty story, where Joshua, under a steroid-induced spell, stuffed our polydactyl kitten, Snickers, in the freezer and tried to hide it. Thank goodness she wasn’t in there long before Jon discovered her -- despite Josh’s best efforts to distract his attention from the refrigerator.

In short::: it must be hereditary

If you follow this link to a new Kodak album you can take a look at pictures snapped minutes ago at the sly little Nathan stowing same piteous cat in a birdcage.

Luckily, there weren’t any tweetys in it.

And while we are on the topic of funny stories – let’s keep this entry totally bubbly and lighthearted.

Kaitlynn is running for class Treasurer (her speech is tomorrow and elections are Monday) and the girls and I are sitting at the table coloring posters. Joshua, being the ever so helpful brother that he is, is ON the table coloring also. I didn’t catch it, but Halie must’ve done something to rile Josh, all of a sudden he stands up on the table and shrieks, “Halie Michael!”


Do we use his middle name when he’s causing trouble?

Not Joshua, he’s an angel….

Must be dad – he’s the only other Michael in the house…

Oh and yes… those are Star Wars underwear ;-)

Tuesday, November 1, 2005

Did you know Spiderman was bald too?

Real *quick* as Josh watches Shrek on TV, who by the way he got to "meet" yesterday t-n-t'ing

As you can tell, Josh was Spiderman -- like there is anyone else? and he was a big hit with his painted head! Which turned out to be an accidental windfall.

We have been keeping an eye out for the famed Spiderman costume, with not much luck. Either wrong timing, or wrong sizing… whichever, just days before Halloween, we found ourselves on a pursuit. Store after store, everything was picked through with a fine tooth comb, finally at the last possible option, we ventured inside, disheartened by the single rack of children’s costumes. We decided to make our way back toward the seasonal aisle and found a strewed mess and still not many more options. We begin to look at other costumes. Batman? Jak Jak from Incredibles, a dinosaur? A Power Ranger?

I was so upset and kicking myself for not acting sooner, I looked up to the K-mart “sky”, sighed, and commented on how all he wanted to be was Spiderman. Next thing I know, I look to the floor, where I had looked many times before, and there sat a Spiderman wrapper – but no costume. I hurried and grabbed Jon’s attention when just then he looks to the ground on the other end of the aisle and there sits the costume!

No mask.

But in hindsight it was the best mishap, I don’t think Josh would’ve left the mask on, and of all the spider men out last night he was the only super hero with a red head. The REAL Spiderman! sembah

Well he’s my hero anyway.

One mom, trick-or-treating with her own children, laughed so hard she reached in her pocket and gave Josh a dollar – LOL – she said it was the best laugh she had all night. All I know is that it was the perfect night to be bald! And I loved watching him dance to all the attention. Whenever anyone would allude to his ‘mask’ he would run, jump, shoot webs and exclaim, “I’m Bidaman

But it wasn’t long before his little spider body tuckered out and he was riding in the stroller, even sooner than the 2-year old Green Goblin, better known as Nathan. Towards the end of the night Josh decided walking up to the door wasn’t worth it anymore. If they didn’t come to him as he hung his bucket over the edge of the stroller, I think he figured he had plenty of treats already. And if he didn’t he would steal his sisters’

Today after his second bath and a LONG soak in the tub, the red-stained-skin is finally faded. But not his web-slinging spirit!