Wednesday, February 13, 2008
We found out today why Al's blood work shows anemia. He has Hemoglobin C. It is a problem with hemoglobin, the part of red blood cells that carry oxygen. Very rare, but normally doesn't cause any problems. He also has G6PD, the most common human enzyme deficiency. Lucky Al! The doctor said to let the pediatrician know so that the kids can be tested. They said he will be have to be monitored closely for dehydration. They are considering doing the Cisplatin (chemo) weekly, instead of 3 sessions during his 7 weeks of radiation. They think he'll have less side effects and they will be able to monitor any reactions closer this way. It'll just be more time consuming for us because he'll have to be up there once a week for a good 6 hours, followed by 2 days of IV fluids for another 4 hours. He wants to work for as long as possible. They aren't 100% sure whether they will do it this way because they don't know if it is as effective as the 3 rounds of Cisplatin in larger doses. That's the standard treatment that has been studied. We'll find out the final plan on Friday. They also decided not to use the Ethyol (drug to protect the salivary glands) because of this condition. The doctor said it is too risky for something that may or may not work. Supposedly, it has a lot of negative side effects that many patients can't tolerate. Besides, they feel confident that 1 gland will be saved and about 60% of the other one. We are just anxious to get started. The doctor wants to start the chemo on Tuesday to fit his schedule. I might have to get our little one enrolled in something on Tuesdays and Thursdays (Mondays, Wednesdays & Fridays are already covered) because I can't bring her to the cancer treatment center twice a week to be with him for several hours. I'll see what they tell us on Friday. I made plans for a friend to pick up our 6 year old, but will have to take our 5 year old along. I don't think she'll freak out or anything. I'm just a little bit nervous about exposing them to all of this. But, that's their dad and they'll know something is going on soon enough.
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2 comments:
Dear Caretaker, Al is very lucky to have you. I now your thouths, and Al's are speeding 100mph, let me recommend a small digital recording devise, many doctors do not mind recording the appointments, but it is good to have and listen to them later if questions arise. I enrolled on another saliva saving program, cannot remember the name of the medication, its on my blog, but the 105 tempeture two weeks into it did not go well and I stopped it. Feel free write privately to: Joaquin_farnos@hotmail.com I will gladly give you my number, if you need to call to vent, etc. Support groups were the best for me. I am sure that if Al has desided to beat this, he will with flying colors. Keep in touch, Joaquin
Hi caretaker,
I am Joaquin's sister, as such I know a little about being caretaker...Joaquin did the entire treatment pretty much on his own, I helped with some moral support. In any event, please feel free to contact me directly(loly@farnos.com) You mentioned you have kids and I know it can be disconserting for them. I have 2 children and I know how worried they were about their uncle. Lastly, our father had tongue cancer over 30 years ago, still very much alive and kicking...:)he just trurned 80 in June. Hence, I also have the perspective of a child living at home when your father is going thru cancer treatment. Joaquin was already away from home, but I was still living there. I am also available to speak with you if you like to. I however, would only send the telephone thru email and not on the blog... Stay in touch...Loly
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