Saturday, February 21, 2009

What's next.

Let's see, a bunch has happened it seems since last update! :-) We are in Kansas for a few more days, then will be heading back to TX on Wednesday. We had to come home to get some loose ends tied up!!

So I guess I left off Tuesday with that appt. Wednesday we had nothing going on so we relaxed the day away! Then Thursday we had to be there at 8:15 for lab, then the appt at 11, then echo at 3. Well they said we'd do lab then ecko then dr appt. Well the echo lab was backed up so we sat an waited, and waited and waited. Were told to come back at 11:30 and they'd work us in. Finally around 1 we were worked in!

So we get the ecko done, then have to wait until around 3 to see the dr! Talk about waiting!! So we finally got in to see the dr. We first saw Dr. Tong (with a T as he said! LOL) and discussed briefly the bone marrow biopsy results. They have determined he has ALL and doesn't have the Philidelphia Chromosome nor the T Cell which is a good thing!! So it's straight up Chemo for him.

Then Dr. D. T. comes in and starts talking about admitting him that day! We had to come home first because they told us only outpatient, so we have to get his insurance stuff figured out, someone to watch the house, etc! Plus we were told we have to talk to business office prior to chemo or any other steps that are different to make sure insurance pays for it.

So they send us there at 4:49 pm and you know nothing gets done that late at night! So we were told they would call us the next morning... So Friday we got up and around and got to the hospital a bit after 10, after getting NO phone calls. UGh!

We go to Leukemia Clinic and ask to talk to the nurse to get the papers back that weren't the right ones for them? Then ask about the business office, and the tegaderm that has irritated James' skin and caused blisters! Oh my! So they said business office would call us when they were ready and that we could go to infusion therapy to get different covering.

While there I got a call back from the social worker to see about cheap (LOL) housing! Well she said to meet her next door to where we were when done. Well the dressing change also turned into caps change and flushing. They won't send home more dressing changes for me, because I haven't taken their classes to do it. Whatever, I've been doing the stuff since January, still not keen on taking their stupid classes for something I already know how to do! We'll see if I end up taking the classes! ;-)

So we go to Social work, and our worker had an emergency so told to come back at 1pm (it was 12:20 then). We got lunch and came back and waited a bit more. Finally we met the social worker. She is really nice. She gave us a list of the housing choices (which aren't that cheap!!) and talked about what they can do for us. I also told her about his PTSD which they were glad to know about.

So then we went back to the clinic got the prescription for the heprin (as I'm almost out!) and talked to business office who said they had it all straigtened out for admitance that day (umm who said today??). We finally got them to do Thursday next week and that's that. So we went back to the hotel and checked out and at 4:15 this am we got home. So that's our plan!

Oh about the treatment (sorry this is a novel!!). It will be 8 cycles of inclusion therapy. Odd cycles will be Hyper CVAD, and the evens will be a different type of meds. The odds are 5 meds that he will take through IV. On certain days they will also draw spinal fluid (spinal tap) and give small dose of the 2nd type of meds through his spinal column. They will also do 2 bone marrow aspirates in Cycle 1, on days 14 and 21. They said they expect a 90% remission rate after cycle 1, with a 95% success rate after all of it!

Cycle 1 we have to stay in the Houston area. Then the others we can just travel. Then after the first 8 cycles, we will start maintaince Chemo for the next 30 months (2.5 years). They think he will recover after each cycle well, and probably won't need a transplant!!! WOOHOO!!! So that's the game plan! Thank you all for your prayers and thoughts! They mean the world to us!!


Ella said...

Katie, it sounds like some good news! That remission rate is fabulous, I'm so glad to hear they are so optimistic about James' recovery.

Thinking about you! Miss you over on the boards, but glad I can keep up with you here.

Life. Complicated. said...

Hi Katie,

I may have a contact for the Houston area for a little better rate at a hotel with a kitchette. Email me at kmcintosh at msn dot com.

Emmy said...

Yay for some good news Katie! It must feel good to finally be at the point where there is a real plan in place. I hope it all goes as well as possible.

Michele said...

Katie, it's all sounding very positive, it must be a huge relief to you both to have a plan.

Missy said...

This is great news. I know some people in Houston and will see if they have leads on cheaper housing.

Katie said...

Thanks everyone!! We really appreciate it all!!