I haven't had a chance to update my blog lately because we've been spending a lot of time down at MD Anderson the past week. A lot of the time is spend waiting between appointments since they can't all be scheduled one right after the other. The hospital has plenty of areas to relax with recliners, couches, tables and comfortable chairs. There are usually jigsaw puzzles to work on too. In fact, the jigsaw puzzles are also in all the waiting rooms. In addition there's places to do research, coffee shops, etc. They've tried to make it as comfortable as possible since everyone has to spend time waiting.
I finally decided to order a Netbook. I went back and forth for a while trying to decide between a laptop, IPad or a Netbook. I wanted something that wasn't too heavy to lug around but that could be easily used for E-mail, blogging and surfing the web. It's taken me so long to order one because I just couldn't make up my mind. Earlier this week I saw Oprah talking about the IPad being her all time favorite thing and almost went back to the IPad. Anyway, yesterday morning I took the plunge and ordered the Netbook from Amazon. It's difficult to keep up with things when I'm down at the hospital all day and too tired at night to get online. Now maybe Reid and I can use the Netbook to help occupy some of our "spare" time although he already has a phone and Kindle that he uses. I'm hoping the Netbook gets here quickly.
Now on to what we know about the stem cell transplant. Last week Reid had a bilateral bone marrow aspiration. That's two in each hip. We learned yesterday that his bone marrow is clear. This week he had all the PET scans again and he still has a few little spots in his chest but they are smaller than they were before. He's been recovering from the ICE chemo and his blood counts have gone up a little although his hemoglobin was still down but not enough so he needed a transfusion.
He will be admitted to the hospital on Sunday, February 13th. The days before transplant are considered minus (-) days. The day of transplant is day "0" and then the days following are +1, +2, etc. Reid will start at -13 which will be Friday (good thing we're not superstitious) when he must have an injection of Palifermin which helps control mouth sores. Saturday will be -12 when he gets a second injection and Sunday will be -11 when he gets the third and last injection and is admitted. (Does this remind anyone else of a NASA countdown or is it only me?)
It has been decided that Reid will not get the standard pre-transplant treatment for recurring Hodgkin's which is usually a chemo regiment called BEAM because it is felt that his disease cannot be effectively treated this way. His tumor appears aggressive and he was stage 4 at diagnosis. Instead, he will be part of a clinical trial that MD Anderson is conducting using three other known drugs. The purpose of the study is to determine the highest tolerated dose of the one drug combined with the other two. Here's the information about the trial from the government website if you're interested in reading the technical stuff. Everything was explained to Reid and he was given many opportunities to ask questions. No promises were made. They were very careful to say things like, "this may..." and not "this will..." Of course, these drugs all have pretty much the same side affects as the other chemo drugs he's had...secondary cancers, sterility, etc. The list goes on and on. You do what you need to do and Reid signed the papers yesterday. This particular trial is ongoing and only being conducted at MD Anderson.
I asked and was told that the doctors meet once a week and present their cases. The cases are discussed and the best course of treatment is recommended for each patient. We are all comfortable with this recommendation and Reid's decision.
It has also been suggested that he consider a second clinical trial. He has plenty of time to think about this one as it wouldn't take place until after transplant but would last a year. This one is a double blind study which means he may or may not get the drug being investigated. It would mean an IV every three weeks and the usual scans and tests. However, if he was in the study and relapsed they would be able to put him on the drug if he was getting the placebo. This trial is for patients with Hodgkin's or at risk for the Hodgkin's to come back. Reid is considering this one too. This particular trial is being done at multiple institutions.
I was thinking the other day that in the last fifteen months Reid has spent almost nine months on chemo. Within the last week he has started feeling somewhat better from the last round of the ICE chemo. We actually all went out to eat last night and had a good time. Now it's time for him to go back into the hospital and start all over again feeling crappy. It just doesn't seem fair. Although he has moments of frustration he's usually got a smile on his face and just keeps pushing forward. For that I'm grateful.
Today we don't have to be down at the hospital for a change and tomorrow he doesn't need to be there until 5:00 for the first injection. It's nice to be able to rest up a bit before he's admitted for probably three weeks or so. I did find a place down in the Medical Center this week and have that reserved for when he's discharged. It's going to be rodeo time in Houston and I found that not everyone honors the medical rates during that time and some places are already booked up. I'm glad I took care of that last week.
Now we have to all stay healthy. No one can afford even a cold right now. We're keeping the hand sanitizer companies in business and so far it's paid off. When we hear someone sneeze or cough we run away. I try and go to the grocery store when they're not busy and visit other stores as little as possible. No more browsing just for the heck of it. We won't be able to visit Reid if we get sick...especially when he has no immune system and very vulnerable to infection. Needless to say, Reid especially cannot afford to get a cold or anything else right now. We would not want to see his treatment delayed.
I'll try and post updates as time allows. If the Netbook gets here quickly I'll be able to do it at the hospital.
Your thoughts and prayers will be especially appreciated over the next couple of months.