8/02/2008

Platelets and more platelets

Thursday's home blood draw was delivered to clinic the same day and they called me later to let me know that Max's platelets had already dropped to 24. He just had reds and platelets transfused Monday so I was a little surprised. He's been going seven days between platelet transfusions for a few weeks now and I had planned on bringing him in on Sunday for his weekly refill.

Well... Max had to go to clinic Friday for the refill. I wasn't sure what to do in preparation for our DLand trip, but the nurse (Beth, who is always very helpful) told me to plan on bringing him back Sunday anyway for a top-off on those platelets. As she put it, giving him more platelets on Sunday may actually put his count above 100. How bad would that be?

Obviously, Max has a platelet producing problem that is not getting any better since we stopped giving him toxic (chemo) treatments. We had hoped that by stopping toxic treatments for a while his marrow would start producing, but we are not seeing the hoped for effects of that.

Instead we are seeing rising VMA/HVA. If you haven't looked at the chart Andy has linked up, Max's 7/28 VMA=425 and the HVA=105.8. This was the second one in a row to go up up up and in all likelihood this means disease progression. Insert expletive of your choice here: ______!

We had a conference call with Docs Roberts and Sholler Friday and tossed around a few ideas with them. Funny thing is we, Andy & I, need to make the decision on what to do, what to give. I feel like we're holding the double edged sword. Max's marrow is weak. It's not producing platelets and even his red production is questionable. So while we wait to see if he can recover the damn cancer is having a field day in there. Then when we decide we have to introduce some toxic treatments in order to fend off the cancer, we're knocking his bone marrow for a loop, too.

During the conference call I asked the docs exactly what it means to be platelet dependent (this question has been on my mind for a while now). Max is pretty much there already. Platelet dependent (in my words) is when your marrow can no longer produce its own platelets. Transfusions are needed every 3-4 days to help ensure uncontrollable bleeding doesn't occur. There are instances when the body can finally make a comeback from this on its own. Many times a stem cell or bone marrow transplant is necessary.

Maybe this sword has more than two edges... Whatever the case, we are not ready to throw in the towel.

3 comments:

lb said...

Hi Melissa,

I've been meaning to comment for a long time. I've been reading your blog from the start. Max and my son were in the same 3 year old class at SBPP....anyway...I had a brother that died of cancer when I was 8...he was 5. I clearly remember the time my parents choose to take him off treatment and bring him home. We had a great 3 weeks with him befor he died. Me and my sisters almost felt relief that he would be in a "better" place, call it naive thinking, but we don't feel much guilt or remorse for our thoughts, although this same period of time was torture for our parents. Call it "faith vs fear" mentality. We truly had faith that he was in a better place. I'm wishing you the best with Max. Enjoy your time. Thoughts and prayers are with you.

debsphotographs said...

I'm so sorry to hear that Max needed to be transfused so soon. I have been watching Max's numbers...religiously and so sad to see them climbing. I can't imagine what you guys are going through right now...all the thoughts...the fears...the hopes of a miracle. My thoughts are with you daily...throughout each day. I cherish you guys and will always, always be here for you.

I hope that the Disneyland trip goes well and you have the most amazing family time together.

Love, strength and hugs,
Deb

P.S. If you want to do the family session on a different day, right after Max is transfused or something, just let me know. We'll tweak the date as needed. Email, text or call.

Anonymous said...

Hi-
I am a random lurker who found your site (and Deb's) after I made a donation to magicwater (via perezhilton - how embarrassing). I can never decide when to delurk - but here goes...

I am utterly moved by your family, your kids and what you face. I check this site more often than I care to admit (considering I don't know you). I feel like I know you all and Max a little bit via the stories and pictures. I loved the pic of him hugging his father - and the ones from the Star Wars surprise.

I think about you guys all the time. I can't imagine what it must be like to have to make the kinds of decisions that you do. Y seem like parents I'd want to have in my court (or how I wish I could be if faced with this) - caring, compassionate, smart and informed.

- Debra from NYC

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