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Post by jfavata on Feb 4, 2008 13:17:23 GMT -6
Kyle has been doing very well. His father came & spent time with him at the hospital, that really helped out! Kyle was not able to come home between rounds. His counts did improve slowly but he came down with an infection - klebsiella pneumoniae. He was put on 'contact isolation' which means that when the docs & nurses came in they had to wear those paper gowns and latex gloves. He also developed a headache and the CT & MRI scans revealed a brain bleed so he had to go off the blood thinners they were giving him for the clots in his right leg (DVT - deep vein thrombosis). They had decided the best was to keep him in the hospital until after the second round & the counts improved - then, maybe, he can come home for a few days. While his counts were up dentistry took care of most his teeth problems. They did not grow in normal when he was younger - started out OK but then grew in the rest of the way with no enamel. He broke a front top tooth that had a root canal...they cleaned it up in hopes of fixing it but it was too far gone. The tooth next to it was just as bad so they ground them off and put in 2 temporary caps. All the rear molars were really bad so they removed them - and the left upper wisdom tooth which was impacting & although it was still under the gum it appeared to have cavities. The next day they took care of all the cavities on the left side of his mouth - very hard to do because he could not open his mouth very far after having those 5 teeth extracted. The right side is going to have to wait until after the second round of chemo. He started round 2 Wednesday. Counts are already starting to drop. This round will be only 8 days, wait for them to finish dropping & then come back up. If they improve quickly enough he may be able to come home for a few days - then he has to return for another round of chemo & bone marrow transplant. Bone marrow transplant - they kill off his marrow & then transplant another persons marrow in to produce cells. There is a 25% chance of a sibling being a match - his sister is not a match. They have to go to the marrow banks & hopefully find one. For more info check www.marrow.org. Once that is done & the counts come up enough he will be able to come home. The dog, cat & houseplants have to go...I have found temporary housing for the pets but haven't approached anyone about the plants yet. He will probably have to wear a mask for some time too. Outside contact will be limited for awhile. |
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Post by IdaB on Feb 9, 2008 17:51:53 GMT -6
Wow, as usual I can't believe how much you and Kyle are going through, but I'm glad to hear that he's still fighting and how much you're able to do for him. I hope this latest round is going o.k. - I've thought about him and you since Wednesday and hoped things were going well.
I'll also keep up hope for a quick bone marrow match - I looked into being on the list of donors once but can't because of the tumors/pain medicine I'm taking. I hope everyone who is healthy will seriously consider signing up - it's such an amazing thing to do.
I know this is short but just wanted you and Kyle to know we're thinking of you even if we aren't good about posting. Let us know how it's going when you get another breathing spell.
All the best,
IDa
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Post by emislema on Feb 11, 2008 20:38:06 GMT -6
Many Hugs Judy.
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Post by jfavata on Feb 22, 2008 6:39:04 GMT -6
Kyle doing OK.
My daughters friend lent him a laptop & set him up with wireless internet service.
He got a 'line infection' this time and that is finally starting to clear up & his counts seem to be starting to come up. Yes, he did get hemoglobin & platelet transfusions this round also. They are still hoping to be able to send him home for a few days.
They have chosen 3 possible marrow donors. Next step is contacting the people to see if they are still candidates - then DNA testing (which insurance will not cover but they have submitted paperwork to an organization for coverage). Best match will be the donor.
In the meantime - I called 12/31 for disability, he had a phone interview early this month (they originally gave him an in-office appt even though they were told he would be in the hospital) & have filed the papers. The hospital called & since he is in over 30 days I have to file Medicaid papers (still waiting for them to arrive by mail). I have learned that once he is released he will have clinic appts Mon & Thurs for awhile & then it will be reduced to once a week (but which day??). The dog still needs a 'foster' home, the person that was supposed to take her cannot have her for a year. I'm hoping they will let me keep the red eared slider - but so far the answer is no (he's in a small room on the first floor of the house & Kyle will not be going in there). I may still need a home for him. One sister is taking the cat - going to be rough, cat is used to being able to go in & out & that is NOT safe by her! Her cats are kept indoors. At least I found someone to foster the iguana!!
Time to go to work!
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Post by glindsay on Feb 26, 2008 21:58:05 GMT -6
Hi Judy,
I haven't been on the forum for quite some time. I am sorry to hear of Kyle's latest challenges. I just wanted to let you know that I am thinking of you both.
~ Gini Lindsay (Jackson's Mom)
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Post by IdaB on Feb 27, 2008 2:20:03 GMT -6
Judy,
Thanks for taking the time to update - I'm thinking of you and Kyle and hoping you guys will start to catch some breaks soon. The paperwork is just ridiculous - I won't even get started on that, but I spent the afternoon on the phone with insurance companies just on my much-smaller recent problems and I was about to explode. It's so unfair that when we're at our most vulnerable, the bureaucracy gets impossible. Does the hospital have any kind of social worker to help you with all this paperwork? They had something like that in Salt Lake - she didn't do the paperwork for me, but helped me (o.k., my husband) sort of keep track of it.
Also, I know this is really minor, but I just saw a little thing in there I can offer some reassurance about! Your cat will certainly adjust. We got our cat after his previous owner died, he was already at least 6-7 years old and had been indoor-outdoor. He got used to being indoors only at our place pretty quickly - took him a bit longer to get used to the dog, but they eventually managed :-), and now he shows no interest whatsoever in the outdoors. Seriously, he got out once, and didn't go more than 10 steps out the front door - he loves being inside. So I bet your cat will be fine too, once he just gets used to it being a new place. Wish I had answers for your other pets, but I'll keep them and you in my thoughts in the hopes that this is one less thing you have to worry about soon.
I know it's hard to find time to take care of you, but if you're able to get a massage or something for yourself, or even just spend an hour in the tub, please try to do it! In the meantime, we'll be pulling for you.
- Ida
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Post by jfavata on Apr 29, 2008 4:38:47 GMT -6
OK, I'm way past due to give an update!
First possible donor was a 9 out of 10 match, second one was 8 out of 10, third donor postponed additional bloodwork twice and did not show up the third time. We have to use the first choice. So, seriously folks, if you know someone who has signed up to the marrow banks and they are questioning whether or not they would be willing to go through with the donation please tell them to have themselves removed from the list or if they are ever called to donate tell the bank they have changed their mind! Because this third person postponed from 3/10 to 18 & then to the 31 & never did come in they did not have the time to go to the bank and ask for another third person.
Kyle got more than a few days out of the hospital, he got about 3 weeks! ;D But that does make going back a little harder for him. His room at home, that was nice and clean, is now a mess again! Ack! And the day before returning to the hospital he was supposed to pack up all the things he wanted to take with him - and didn't do that either...however he DID stay out very late with his friends, going to Wendys etc for munchies. Had a heck of a time to get him up & moving the next morning...
He is now in the transplant unit & will be receiving 4 days of Busulfan, then 4 days of Cytoxan and the last 2 days of Cytoxan they will start 3 days of Anti-Thymocyte Globulin. One days rest & then he receives the marrow.
The donor is a 9 out of 10 match. The transplant doctor told me that unfortunately the one that doesn't match is one that greatly increases the chance of Graft vs. Host Disease. GvHD means that the transplanted cells may react against Kyles' organs and tissue. He will have to be on immune suppression drugs for awhile & will be very susceptible to infection. "Severe and persistant GvHD may lead to fatal complications."
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Post by IdaB on Apr 29, 2008 12:10:11 GMT -6
Judy, Wow - as usual.
I'll be thinking of Kyle and you and hoping the transplant goes perfectly. No GvHD allowed, only smooth transplantation, no complications, and speedy recovery!
Hugs -
Ida
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Post by jfavata on May 8, 2008 16:01:52 GMT -6
Time for another update!
Donor showed and marrow was aspirated. Don't know where it came from but there were preservatives added to the marrow so when it finally arrived at the hospital yesterday they 'cleaned' it first to remove some of those preservatives - of course that took some time...
Infusion of marrow started at 5:37PM. Must have been a really big guy! There was almost 2 liters of marrow! I left after midnight & there was at least another 1/2 hr. until they were done. It went well. They check blood pressure and temperatures during the whole procedure. A nurse must remain in the room at all times.
Interesting fact - they had said that blood type is not an issue when it comes to marrow. When they ask for possible donors from the banks they ask for sex and age range. What I never thought about was WHY blood type doesn't matter - it's because they are going to kill your marrow so there will be no problem. It also means that you can get a new blood type! So Kyle's blood type will change over within about 2 weeks.
Now the tough part really starts....
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Post by jfavata on Jul 27, 2008 9:31:13 GMT -6
Thought I'd let everyone know how he's doing - OK.
He had a nice bout with the Graft Vs. Host Disease (GVHD) and went through all the normal bone marrow transplant issues - mouth sores, peeling tongue etc.
He was released from the hospital July 7th. Skipping all the details - I did not find out until after 2PM and by the time I got there it was 6PM (had to return to work, tell them I had to leave, pack a few extra things in the car & then drive the @ 2.5 hrs to the hospital). He was not sent home though, he was released to the Ronald McDonald house. I bought a UVC fixture for the room - UVC light is supposed to scramble the DNA of viruses etc so they cannot reproduce. Someone must stay with him while he's there so I have been there most of the time and my older sister comes in for 2 days/wk so I can get home and work (ah, bills, what a wonderful thing!).
Anytime he is out of the room he must wear gloves and a mask. Anything he will touch must be wiped down with special wipes to kill anything infectious.
He returns to the clinic every day M-F for CBC and ganciclovir infusion (antibiotic - he still has a CMV infection & that can take anywhere from a few days to weeks to clear up) and anything else he needs.
Also his platelets aren't 'sticking' and he frequently has to get them - about every other day now. Clinic isn't open on weekends so last week they infused platelets Friday and he was down to 9,000 by Monday. Sometimes he's in clinic for only 3 hrs....and sometimes much longer (so far the longest day was 10 1/2 hrs) - all depends on what he needs & how fast they can get it.
Dietary changes include NO thin skinned fruit. All food must be thoroughly cooked to past well done - fresh veggies must be boiled @4 minutes before steaming (I hate boiled veggies, you lose the nutrients). Many foods must come from sealed packages - i.e. nothing from a bakery unless it is commercial bakery and sealed in a box before it gets to the store. No restaurants or take out. Must intake large amounts of fluids too. This is for the next year. He also has developed steroid induced hyperglycemia so there has been more changes - diet foods and limits to carb intake.
He takes pills starting at 6AM and the last ones at 11PM. 2 blood pressure meds, magnesium, anti-rejection, steroids etc. One of the drug he takes makes his hands shake so he has a hard time writing or doing anything that requires 'fine motor skills'
When will he be home? After the CMV has cleared up and he can hold platelets for at least 4 days. Then he will need to go to clinic at least once a week and they might be able to arrange for him to get platelets closer to home in between visits.
Must be closely monitored for temperature, rashes etc. They want someone with him 24/7 (did I mention needing to work??) and apparently he's not needy enough to qualify for anything more than a home health aid - there's none around here that take insurance.
SSI - he qualifies but will not receive anything. I think it was @$637/month, minus the $212.33 they figure is the value of food and shelter (sheesh - wouldn't we all love to get food & shelter for that little??) and then deduct the $500/month I receive as child support - so there's nothing left. Yes, I did speak to someone & she also doesn't think it's right to deduct the child support (if still married there is no child support and the $212.33 remains the same so those folks still get some SSI).
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