Since moving back home I've kept pretty busy unpacking, cleaning, grocery shopping, making numerous trips back down to MD Anderson, and sleeping. I probably slept a good part of the first few days. I also took time to sterilize the kitchen and bathrooms with bleach. We now have some new rules...no more leaving meat to thaw on the counter and all left overs need to be dated and then tossed three to five days later. All the things we're supposed to be doing anyway, but never have in the past. Until Reid's immune system recovers we'll be as conscientious with all of this as possible.
We found out last week that he'll have to have all his childhood immunizations again in six months. He also only has to wear a face mask at the hospital or in real crowded places.
His energy level has continued to go up and his appetite has improved. Both have a long way to go, but we're seeing almost daily improvement. He probably lost at least ten pounds in the hospital, so it will be nice to see him gain some of it back.
It sure was nice when we were living at Candlewood and only ten minutes from the hospital. Now it's an hour each way and we've made numerous trips for blood work, follow up appointments and visits regarding the next clinical trial.
The good news is that Reid's platelets almost doubled last week and reached 50 which was necessary to be considered for the trial. He met with the clinical trial nurse and the doctor, decided to join the trial, and signed the necessary paper work. Right now we're sitting in a very crowded waiting room at MD Anderson waiting for his name to be called for a blood draw. After this he has an appointment for an EKG, Then tomorrow he'll have more scans and if all goes well he'll start the clinical trial on Thursday. It's still not a done deal, but we're hopeful he'll be approved to participate.
I do think he's made the right decision. If approved he'll be the first patient at MD Anderson in this trial although it's a phase three trial. It's a double blind study being conducted at numerous sites. He might get the actual drug or he might get the placebo. However, if he's on the placebo and relapses they will be able to give him the actual drug. I did some research and learned that the company running the trial has had some positive results with this particular drug in phase one and two and in February applied to the FDA for fast track approval.
I think this drug would be considered targeted therapy. I'm no scientist, but I try and make sense of the scientific stuff I read. There's something called CD-30 that's in the
Reed-Sternberg cells. Those are the cells they use to identify
Hodgkin's. This trial drug goes through the blood stream and destroy cells with CD-30 without harming healthy cells. A much better explanation can be found on
Seattle Genetics' website. Now I'm hoping he gets the actual drug, but we won't know. It's randomized by computer and that will be done this week if all goes well. Reid, the research nurse, the doctor, those administering the drug or placebo won't know. Since the actual drug does have some side effects I suspect Reid might be able to tell at some point.
We've moved to another part of the hospital and Reid is now having the EKG. I won't be posting this until later today when we get home. I took a few pictures yesterday and haven't had time to get them off the camera and would like to add pictures to this post. We plan to hang around here for a while in hopes of hearing from the Physician's Assistant about his blood draw results. If the platelets have stayed up he'll be able to have the central venous catheter removed, and he'd love to have that done today. So, we're going to stay close by for a while just in case.
Update: Good thing we stayed around for a while. Reid got a call from the research nurse and we're now waiting in the Brain and Spine Center for him to see a neurologist. This clinical trial requires that he be seen by a neurologist and a form filled out and signed before he receives the drug/placebo. So, now that will be completed today too. As far as we know all that's left to be done are the scans tomorrow. If all goes well he must begin the trial no later than Thursday in order to be in compliance with the trial's requirements.
We're home now and the rest of the day didn't go as well as we had hoped. After waiting for over an hour in the waiting room they finally took Reid back. I waited for him and wondered what was going on. He said they did some tests and then he waited in the room for the doctor. After an hour of waiting there she came in but wouldn't fill out and sign the form because she didn't know what it was about. Reid told her it was for a clinical trial, but that didn't make any difference. So, when he came out he called the research nurse and she told him to leave the form with the receptionist and she'd come by and get it. I'm assuming she'll get the doctor to take care of it because it must be done before he can enter the trial. I'm not sure who is at fault, but Reid's the innocent victim in the whole thing and we're running out of time.
We stopped at Subway on the way home and had something to eat. We left the house at 7:15 this morning and finally got home around 4:30. It was a long day and he never heard from the Physician's Assistant. Hopefully, she'll let him know something tomorrow and maybe he can get the central venous catheter out after the scans. We'll be leaving the house again tomorrow at 7:15.
On a happier note Keith has been here since Saturday and will leave for home tomorrow. Yesterday we went to Lupe Tortilla to eat. It's a Mexican restaurant that we all enjoy.
This is Reid, Keith and Jim entertaining themselves. Reid and Keith with their phones and Jim staring off into space.
I asked them all to look my way for a moment and they obliged...
