Riley had none of the more serious reactions.
Platelets are joining white cells. They are holding and turning up . Tom, sitting in the corner of the examination room, said in that case he wont say anything more on that other subject. He was going to bring up the marrow again, but passed since according to the doctor Riley's progress is great.
WBC 4.0 reference range 6-17.5
Gran 2.9 range 1-8.5
RBC 2.58 range 3.1-4.5
HGB 6.7 range 10.5-13.5
Plt 26 range 300-750
Platelets finally showed progress all on their own. They did not crash back down to below 8 this week, but held at a lovely level of 26. The whites held to the point that last week we went to every other day on shots. This week we are only to take the blood booster Filgrastim on Saturday. Then wait for our blood tests on Thursday next week
The doctor even thinks this may be the last red cell transfusion Riley may need. He is getting one unit today. He had a mild headache starting last night. He couldn't take a long walk with me without stopping to rest. His Reds were at 6.7, so it was not surprising to the doctor .
I asked about the white blood booster. Its a protein that attaches itself only to the white cells. It accelerates their growth. EPO does not work. It has been tried in trials with Aplastic Anemia. For what ever reason it was unsuccessful. The doctor listed other blood booster I had read about, but said they had been tried unsuccessfully. He said the pharmaceutical companies would love for their drugs to work in other areas and had run trials, but the results were that the other blood boosters just don't do anything for Riley's condition. He ran down a list of unsuccessful drug trials. This treatment works.
I asked about adding exercises to Riley's life. Golf in particular. He said OK but hesitantly. He didn't want Riley hit with a ball, and definitely no contact sports. Walking or a treadmill was his preference. we have got to get out of the house though. I am going stir crazy. The tutor said she was uncomfortable if I left for time during their sessions. It is one of the safety rules that I have to be present throughout her visits. So, I am house bound every tutoring afternoon. The house is set up with that open floor plan, that it is hard for me to do anything productive without distracting Riley from his studies. I hide in the office on the computer most days, staring st my messes of papers on the floor.
We asked about Riley's resistance level. He said these levels protect from bacteria but not necessarily from molds and spores and definitely not from viruses, so still avoid people and busy places.
The doctor asked how studies were going. Tom and I both snickered. I pointed out that Riley had brought work with him, but he had a war game up on his computer screen at the moment. Studies must be done, says the doctor. I love the reinforcement.
It's always nice when you post about good news. Sometimes I don't understand what your talking about but of course take your word for it. Like that you look at the good side of things even when they are small.
ReplyDeleteToday is a small word day for me so most everything went over my head, I'll have to read again later. What spoke loudest how ever... something shut Tom up.
That is such good news. When I first heard Riley's diagnosis, I googled it of course and read another mother's blog about how her son had rebounded after the same treatment, even though the odds were against it. That's what I have been hoping would happen for Riley. As for studies, I know he needs to keep up, but he's also learning some very big life lessons, not to mention biology lessons. Even though he seems like he doesn't listen, I am sure a lot is soaking in. Another silver lining. Think of all the new career possibilities he's being exposed to as well.
ReplyDeleteHopefully the weather will be good enough that you can start doing yard work while Riley's tutor is there? You'd be within voice range, so maybe she'd think that's good enough.
I still say Riley should be careful with a treadmill. They are easy to trip on. Warn him not to play with the speed if he uses one, and to be careful when getting off.
Much love to all.
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ReplyDeleteThat's really great news! I have been feeling optimistic ever since I met Riley's Dr., but I'm trying not to jump the gun. The one impression that I did come away with, was that Riley was recieving excellent care, both from his medical team and from his family!
ReplyDeleteThoughts on outings for exercise: The zoo in the rain (hehe), the rose garden, the rhododendron garden, the japenese garden...etc...places that are outdoors (fewer germs) and can be educational and fun. Sometimes just having a destination will make exercise fun.
Love you so much!
Jen (using Albert's account again)