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Post by jfavata on Jul 28, 2008 4:09:20 GMT -6
OMG!!!
I forgot something very important! The last MRI reports!! The Silver Lining in the Clouds!!
With all the treatments, and I suspect it was the AraC that was administered through the Ommaya in his head....and although there was some movement required to do the full brain & spine in 1 day....it appears that some of the tumors have disappeared and some others have shrunk!!
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Post by Ali-Brad on Jul 30, 2008 5:37:32 GMT -6
This an amazing catalogue of courage, pain, fear, drive, uncertainty, determination, admiration, hope, etc, etc.........
I wish you and Kyle the very best,
The marrow donor is a person to be admired - a wonderful gift
Alison
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Post by jfavata on Sept 25, 2008 7:29:07 GMT -6
Wow, has it really been that long!
Kyle is doing OK. He had 2 visits to the ER for bloody noses that wouldn't stop (2-3 hrs), they have to give him platlets when this happens.
Last visit to the ER he was admitted - staph infection in the broviac lines again. They said there could have been just a little left & it took this long to re-infect. Soooo, another hospital stay for about 2 weeks - he may be released this coming Sunday.
Still have not been released to go home. They were giving him double platelets 2x a week (Mon & Fri) and if needed single platelets on Thursday. Then they gave him neupogen & epogen shots to stimulate increase in the neutrophils & red blood, but he got the infection & it was back to the transfusions.... BTW, when he got the infection his platelet count was 3,000.
Blood type has been slowly switching over. Apparently it can be as soon as 2 weeks or much longer - he's one of the much longer patients.
About work - went from "income challenged" to "income deficient" - "laid off" (replaced). Can't get unemployment because I am 95 miles from home & unable to take a job at this time (he has to have someone with him at Ronald McDonald House). Ditto for social services - they want you working 30 or more hrs per week or they put you on workfare. With social services I would also have to cash in IRAs etc & when they figure you should run out of money then they will help - been there, done that yrs ago & back then they figured housing for 3 people at $348/month - not around here! Might also want me to sell my 9 yrs old car & buy something older - last time they wanted me to sell my 12 yr old car & buy something older! (yet I have heard people with new cars & making payments on them don't have to sell it off & buy an old car). Then there's COBRA to pay for (me - he has his fathers insurance & medicaid)
Soooo, at any rate....we'll be muddling through..... When he comes home I will apply for unemployment & start looking for another job. (sigh) Know anyone who would be willing to hire a full time worker who has to take 2 days off/week? lol.....
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Post by Day on Sept 30, 2008 22:43:17 GMT -6
Wow...prayers are with you both
Day
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Post by IdaB on Oct 5, 2008 21:50:50 GMT -6
Judy, thank you for the update. I think of you and Kyle often. I so hope you catch a break soon and that things start to get easier. You'll continue to be in my thoughts and good wishes.
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