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.


Melissa Morgan said...


Josh, Just stopping by to say Hi. Hope you had a great Turkey day. Are you ready for Santa Claus? I bet you are on the good boy list!! Christmas is coming soon......Did it snow in Erie? We had a little on Turkey day but it is gone now. Hope you are feeling well. I think about you often. I will keep checking back to see the postings mommy puts is always great to hear how you are doing. All my best.....Take Care!!

Melissa Morgan
Palm, PA
United States

Marian Nicks said...


Hi guys,

Just to let you know we are thinking of you, and wishing everyone well.
Take care, we love ya's,

Mare & Jer {: - )

April Molle said...


Hey There Josh and Marian!
You are certainly had a few rough days! Sending lots of get well wishes and prayers your ways!
Best wishes always!
April Molle

April Molle
United States

Maureen Felder said...


Hi Joshua, Marian and Jon- Just got an e-mail from your Mom,Jon , so wanted to get this off to you right away. Our thoughts and prayers are with each of you and that will continue! We're hoping that you get to come home real soon. Know your sisters and brother are awaiting that too. Love your spiderman outfit, but love the guy in the outfit better, Josh. You're such a sweetheart! Keep up that great spirit!Take care and get well real soon! Love to all- Maureen

Maureen Felder
Ponchatoula, LA
United States