Wednesday, May 23, 2012

Update to my previous post...

Reid received a phone call from the stem cell clinic a little while ago and was told that Keith is a match.  So, if at some point he needs another stem cell transplant he would receive Keith's stem cells.  Of course, my prayer is that it never comes to this and that the Adcetris puts him into remission forever.  There are no long term studies because the drug is new, but I'm praying for forever.

Tuesday, May 22, 2012

The big reveal...

Before I head off to bed I thought I'd post an update.

Today was the big reveal.  Actually, when Reid checked his MD Anderson schedule online this morning he saw where he had a blood draw, doctor's appointment and an infusion for SGN-35 (Brentuximab Vedotin) listed for today.  We knew that SGN-35 (Brentuximab Vedotin) was Adcetris and that had to mean that he had been given the placebo in the trial.  Of course, when we got down there the doctor also told him.

He had the infusion and so far he's feeling fine.  In the past when he received chemo he was sometimes sick on the drive home, but Adcetris doesn't have as many side effects as other treatments.  Hopefully, that will last or at least any side effects won't be as bad as in the past.

Adcetris received accelerated approval from the FDA last summer because of promising results.  Approximately 34% of patients went into complete remission and 75% had positive results during one of the studies. I believe it's actually the first new drug for Hodgkin's since the 1970's.  It's a rare cancer with normally a high cure rate, so not much research is done. I'm grateful that Adcetris has become available at this time. My hope and prayer is that Reid goes into remission.  We're due for some good news one of these days.

He goes back now every 21 days for an infusion...just like he did for the clinical trial.  I believe there can be as many as 16 infusions, but there might be less.

Wednesday, May 16, 2012

No new news...

I was hoping I'd have something new to report on Reid, but I don't.

We went down to MD Anderson yesterday and saw his regular oncologist. They still didn't know whether or not Reid had been on the placebo or the actual drug in the clinical trial. His oncologist thinks he probably was not on the real drug since he had no side effects, but we still have to wait for the actual reveal before he proceeds with any treatment. So, he'll be going back down next week and hopefully we'll know something for sure by then. The doctor did say that if he hadn't been on the Adcetris they would probably start the infusion then.

Meanwhile, we're trying not to get our hopes up too much so we won't be too disappointed if he needs to have another stem cell transplant.

Keith and Troy have both had blood drawn to see if they could be potential stem cell donors. Yesterday, Reid had quite a bit of blood drawn and we're assuming that's to get his blood typed (or whatever it's called) too.

So, we really don't know anymore than we did two weeks ago.

I'm grateful that Jim didn't know any of this and was able to assume Reid was OK before he died. He was always very optimistic and although he knew Reid was scheduled for a biopsy he always assumed the best.

I also feel very positive right now. I think Reid is going to be OK. Thank you for your prayers!!

Meanwhile, I wanted to share this site with you again. I know I've posted it in the past, but it's time for an update. I've been following this live cam of Peregrine Falcons that nest on top of an office building in Jersey City, NJ for a number of years. This year three eggs have hatched. Be sure and read the Nest Box News for updates.

I told the kids to watch for the Falcons when we flew in and out of Newark Airport last week. We didn't see them, but I knew they were there.

Saturday, May 12, 2012

Another update...

I feel like I've made some progress.

Since last posting we've made a quick trip to New Jersey for Jim's burial. It was a very nice graveside service with military honors. We saw many relatives and friends and got to visit and share memories. We flew up last Friday and back on Sunday. Needless to say, we were a little exhausted afterwards.

I've spent the last week trying to get a lot of paperwork done. I've also spent a considerable amount of time on the telephone. There's just a lot to do. I'm trying to wade my way through Medicare since I'll be coming off Jim's work policy shortly. Lots to read and try to understand. That kind of thing was always Jim's department.

Reid and I were mistaken about his doctor's appointment. We thought he had an appointment this past Wednesday, but discovered our mistake Tuesday evening. His appointment is this coming Tuesday. Oh dear...I mistakenly made an appointment at the bank on Tuesday and now must change that one. How did we get so mixed up?

I've started writing thank you notes in between everything else. I just hope I'm able to adequately express my heartfelt appreciation to everyone.

Thank you for your prayers and support.

Wednesday, May 02, 2012

Life isn't fair...

...but no one ever said it would be.

We found out this morning that Reid has relapsed.  Yes, the Hodgkin's is back and my heart is breaking.  What next?

We don't know whether or not Reid was given the new Hodgkin's drug, Adcetris, in the clinical trial.  If not, that will probably be the first treatment option.  They didn't know yet since it takes a little time (paper work) to get it revealed.  Meanwhile, another transplant is also an option, but this time using donor cells.  They're going to go ahead and test Keith and Troy to see if one of them will be a match.

I just get so sad thinking about all that Reid has been through and yet 99% of the time he goes through it all smiling.  I would not be so nice.  Our goal is to get him well and that's where we are going to focus our attention.

We'll certainly be spending more time again down at MD Anderson, so the E-mail sitting in my mailbox might not get my attention anytime soon.  One of these days I will get caught up, but between clinic visits and handling the things that must get done since Jim's death it will probably take longer than I originally anticipated.

I'm also busy trying to get the house cleaned for the house sitter too.  I'll be back!

Thank you for your support and prayers.

Tuesday, May 01, 2012

Another Update...

I want to thank everyone for their warm thoughts and prayers.  I just don't have time right now to reply to everyone personally, but hope to catch up eventually.  Reid and I spent a good chunk of time yesterday coordinating flight plans, booking flights, reserving a car, and finding a hotel in New Jersey.  I've also made arrangements for someone to stay at the house while we're gone.

The funeral on Saturday went well and we all came away from the experience feeling good knowing how well loved and respected Jim was among friends and colleagues.  It really helped us immensely.

Reid had his core needle biopsy on Friday and had an appointment scheduled to see his doctor yesterday, but they called and said the results weren't back yet.  He's been rescheduled to see his doctor tomorrow instead.  We've had any potential surgery postponed for now.

Most of our early pictures are slides, but Troy scanned a few for the funeral.  I thought I'd share some here.  We've had a lot of fun going through the old pictures.

This is Jim picking lemons in Sicily circa 1970.  He looks like a kid!
This one was taken when we visited Capri.
This photo was taken shortly after I came back from Naples after giving birth to Troy.
We've always had so many fond memories of our Navy days in Sicily.  It was a great time in our lives. and something we spoke of often.

This photo was taken in 1976 in Virginia Beach, VA.  By then Reid had joined the family.

I'll be out of contact for a while.  There's just so much to do right now.  Jim was an accountant and he always paid the bills.  I'm wading through everything and trying to pay what's due now.  The first bill I ever paid was the funeral bill, but I think things will work out OK.  It will just take time.  Eventually, I'll be back.  Thanks again...