CURRENT INFORMATION

December 27th 2002 Well ho ho ho and Merry Xmas... And a Happy New Year..Even though New Year is not here yet thought I should put that due to my rather slow updates. Like the last update I've broken this down to try to make the reading a little easier, my old English teacher would be so proud of me. Medical Situation School General stuff Visitors Friends Xmas Holidays Thanksgiving Almost time to celebrate!
Medical Situation Several weeks ago Toms kidney levels started to rise to an unacceptable level, first line of defense was reduce the medications that he needed the least, in particular acyclovir which protected him against the potential of the Zoster virus, or more commonly known chickpox/herpes/shingles virus, it's all of the same family. This did allow his kidneys to recover, unfortunately though, the virus did actually activate and he got a shingles virus. We were given the choice of putting in the hospital for 1 week or taking care of him ourselves at home and administering IV meds to him every 8 hours, naturally we opted to keep him at home. They accessed his port and left a cannula in there for easy access, home health delivered all the goods, lots of IV acyclovir , line flushes, heparin, syringes etc. However it was a little overwhelming, the first IV's we had given in 6 months or more, and the items they gave us were all different, we had to fill our own syringes from viles, and the lines were different, plus no pump, just gravity fed, which I was not keen on at all. We were given some bad info on the flow of the meds and the first one definately went in way too fast, so after getting with Dr K at Duke she agreed a pump should have been supplied. So I had them deliver a pump and some prefilled syringes. Nicola took are of 99% of it, unfortunately I went down with the most horrible flu that took me two weeks to get over, Amy also managed to pick it up, and yet Tom never got it. After one week, we had seen improvement and Tom tolerated the meds well (no kidney issues) so they decided to give him another week at a higher dose, after that it was on to tablets. The shingles cleared up ok, but it can take a long time to get rid of it completely, it's now in his nerves and every few hours causing him the most terrible pain, he will scream and cry, increadibly painful, it lasts for 15-20 seconds and then fades, leaving parts of him feeling numb. We're not sure how long this will go on for, but whilst it does Tom won't leave the house, as it also effects his stomach, plus is too much for him to handle. We were in Blockbuster Video the other day and it kicked off just as we were leaving, not good :( Because of all of this his counts are a little out of wack with a lowered white cell count, and neutrophil counts of only 35%, which was a worry but we're assured by Dr K that it's all related to the virus. His platelets hit a record 220 (220,000 to our USA visitors) the other week but have dropped to the 150's which is still ok, monocytes are increased which is a sign that he's recovering from the virus. So this has all meant increased visits for kidney (creatinine) tests and liver (BUN) tests, it's all settled down now and we should be back to once a week visits. In a few weeks, I think Jan 17th 2003, we're going to make yet another long haul up to Duke, a good 12 hour drive each way. We're tempted to fly but are still worried about his heart kicking off with it's 250bpm problem, even though he's not had an episode for a good 6 months now. Somebody mentioned to me a while ago that I would fall in a barrel of you know what, and come out smelling of roses, I guess that Tom has that gene I'll have to check the HLA tests :) ...Even though he got this horrible virus and things got rough, aside from the pains he is getting which are very, very bad, it did have a positive side to it. He needed as much help from his immune system as possible, that virus could have proven to be extremely dangerous to him, so they had to lower his med's, we consulted with Dr K and she suggested dropping his prednisone steroid to a record low of 2.5mg per day, and also halving his FK-506 (tacrulimus) anti-rejection which had already been halved not too long ago due to kidney issues, he was running the risk of GvHD kicking back up putting us between a rock and a hard place, GvHD can be a major issue, and unfortunately a killer if left to run riot, so can shingles, GvHD is controlled by lowering the immune system with medication, Zoster virus needs to be fought with the immune system, so it was a time of concern, anyway, he handled it all just fine, no GvHD problems at all, and they are not increasing these meds now, so he actually got a good medication wean out of it, which is most definately a step in the right direction. I forgot to mention pain medications don't work with this virus, what they did give him was a medication that is normally used to treat epilepsy as it effects the nerves and can help reduce the pain, did it work for Tom, I don't think so. We can add another med in a day or two, but if we do, it will also start to make him sleepy, and this current med alreadys see's him wanted to go to sleep around 7pm. Oh, and because his FK-506 is now so low there is no need to test this level in his blood, which is great as we were forever tweaking around with it which is a headache if you have to then start going to hospital several times a week to monitor it, plus we'll save at least $600 a month just on the level tests, don't ask how much the medication itself costs! Toms appetite is still low and he continues to lose weight, he's around 32.5kg, around 72lbs, or just over 5 stones for the Brits. His hair is still very thin, we're not sure if it's ever going to grow back correctly, this is something we'll talk with Dr K about on our next visit. She suggested it was GvHD in the scalp, but we've also read that some of the meds he is taking can cause this, he has also not grown at all since transplant, we're hoping that we don't have to go down the path of growth hormones. I think that from the last meeting with Dr K that she said they were probably going to wait until 18 months out of transplant before they become concerned as at his age he may approach a growth spurt soon. It's the radiation that could have caused this problem.	Tom and Chris Kahler hanging out playing video games as usual, whilst Tom gets his infusion We've been meaning to fly this rocket for years! It was rather windy to say the least. If anybody at Palm Lake finds a rocket, it's ours! LOL
School Ahhh.. no school, isn't it great! Aside from the fact that Tom still has some work to finish due to him being ill and Amys teachers gave her homework before she broke up, oh how good of them that was, so there is still work to do, we didn't want to relax over the holidays, oh no, we love homework, we should have asked for more. Through Tom being sick and then his teacher getting sick he's missed quite a bit of school recently but nobody is concerned as we're told that he's covered most of the work for the year anyway and is way ahead of the pack. Amy is also doing well as usual, so no change there :). It does not look like Tom will make it to school in January, we have to take a look at the immune system studies which will take time, so we're probably not in a position to even think about it until the end of Jan 2003, then this shingles thing might be causing problems for him still. Even if we get rid of the shingles pain, and the immune studies show up good, we then have to ask ourselves if we want to take the risk of him going back there and catching something, most kids don't wash their hands when they sneeze etc, it'll be a germ pit, plus we worry about his heart issue and if they would be capable of handling him, what if he's walking from one class to another? Could it REALLY be handled promptly, I personally doubt it very much and think it is more trouble than what it's worth and that we should sit it out until the end of the year and give him the Summer to continue to become stronger.	Our 'A' student
General Stuff The weather here has been just great, around low 50's in the evening, and high 60's to maybe 70's on the odd day during the day, which does allow for the very basic of things like being able to go outside without getting burnt to a crisp, nice low UV levels so Tom doesn't have to worry too much either, even though with this shingles he's not going anywhere, but it is nice and fresh. We've had a few odd days where it's just rained.. and rained, filling up the lakes even more which helped our channel to the dock allowing us much easier access now, hopefully it'll stay full for some time. Tom won't go out on the boat though, says it makes him feel sick now, that could be something to do with the crazy..as fast as possible circles that we do, or because he sits on the front sometimes and just buries his head under his jacket without looking where we are going, the shingles pain also puts him off as he often needs to go to the bathroom after the pain.. poor Tom :( .. If the pain goes soon perhaps I can get him out there, it's a shame because these nice cool days are just fantastic for a cruise around with the cold air blowing in your face, for those of you that live in Orlando I know you'll be able to relate to this, and for those of you that are in the UK thinking that we're insane trust me, you can get too much heat and humidity, in the Summer you can't breath here it's horrible. Aside from everything else I've mentioned on this update, not much else going off. Oh, I nearly forgot, and a Happy Birthday to Nicola, Dec 1st. unfortunately Tom had started with his virus the night before so all bets were off, no party time for us. He was actually supposed to be golfing with my good friend Roy the day afterwards but he couldn't walk, it was a shame as he was really looking forward to it, it was something he's wanted to do since transplant.	I've always wondered why people take pictures of cakes. So I thought what the heck post a picture on the 'Net, now we have a reason :)
Visitors December 27th we got a visitor, Grandma Jean. Tom and Amy were excited.. So was I Jean, so was I .. honest LOL. I think she's here for 2 weeks but I'm not sure. With Toms current problems we probably won't make it anywhere at all, but I don't think that will bother anybody. We'll get Jean out of the boat, either Nic or I, somehow I don't think she'll get into the tube though, but I'll have a go LOL.. She said something about gators? Don't know what she's talking about, there aren't any gators in Florida.. Don't worry Jean you'll be just fine LOL	Tom and Jean by the other Xmas Tree What you don't have two tree's? Jeez your just not cool then.
Friends Chris Kahler Jr has been spending a lot of time at our house for some time now (Chris is our old next door neighbor from when we used to live in North Bay) which has been just great for Tom (Big understatement), as the only other person Tom gets to hang with is Brandon and as he lives a reasonable distance from us now can only make it over here at the weekends (and had to stay away recently due to family illness), in fact he is here this evening and stopping over the weekend. Luckily Chris and Brandon are also big gamers like Tom so they get on real well! Chris's dad did offer to give him to us, I think we're signing adoption papers next week LOL Actually I would like to take this opportunity to clear something up, I've spoken with the odd parent over the last month or so and people don't seem too clear on Toms situation with regards to visiting him. As long as there is no illness in your home and nobody has been in contact with anybody that has been sick in anyway for the last 2 weeks, then it's fine for you to visit him. In himself, you really would not know he was ill..strike that, he's not ill anymore..he's recovering, ok the hair is thin but he's looking great, and aside from the shingles feeling fine, he can't go into busy areas but is good to go on video games, shooting some pool, watching movies/TV and maybe a little boating and so on. I know that Tom would very much like to meet up with some of his old friends, some of them he hasn't seen since his trip here mid treatment when he was in the UK over 12 months ago. Even if it's been a long time, feel free to give us a call, all of his old friends are always welcome over here, just click here for our current contact details including new address and phone number...	Rocketeers Tom and Chris
Xmas Holidays Tom was excited as usual about Xmas, it's his favorite time of year, and although things were still not as perfect as we would like them relatively speaking things we're pretty good, especially if you consider where we were this time last year, just getting ready to move onto the unit as inpatient and start radiation with the fear of the unknown. How things have turned around. The kids got lots and lots of presents, Amy's favorite present was a Sony Ericsson T-300 cellphone, one of those new color cellphones with the little plug in camera, web access and built in games, very cool, and Toms favorite was his X-box to join his existing big pile of video game machines, I believe we have every system now! Well he has a lot of time on his hands, in fact I just set them all up today on a switch box to make life a little easier. Oh and we got them both cool looking mini fridges for their rooms, so now Tom can stock pile all the water that we make him drink to keep those kidneys in tact :) It was a rather uneventful day, we just chilled out. Although Tom fell asleep (medication related) and missed xmas dinner, he was very unhappy about that, but there was no way he would wake up, I did wake him up and he asked me to save him something of course when he woke up he didn't remember saying that and blames me for leaving him asleep, maybe we'll have another one tomorrow.. Nic - What do you think? Btw: If you see an army of 10,000 send them our way, as usual more than enough food to go around, Toms friend Chris stopped for dinner also, but we just couldn't eat it all. Oh, I have to tell you about the cruel joke, I couldn't help myself, you know me always up for a good joke and what better time than Xmas day? Amy had been driving us insane for a new cellphone, and we just kept telling her we don't have time to look at it all, it's too complicated, we have a contract with our current carrier and so on, her face was to the ground for weeks before xmas, she was really mad, like we're going to tell her we've got a new phone for her. Anyway, around 7 years ago when we first arrived in the USA cellphone technology was not so hot and phones were rather large, you know, like bricks, well I had an old phone, real big ugly thing...I think you can tell where I'm going with this right?... It was in perfect condition, looked like a brand new phone.. and Amy had not seen it for years, certainly would not remember it.. now do you get where I'm going? Ok, so what do I have Nic do? Wrap it all up and stick it under the tree. Well you should have seen her face when she opened it, we made a big deal telling her here is your 'big' present, we got the camera rolling and she opened it up, oh boy, you should have seen her face, it was so funny (for us - Sorry Amy), Nic told her, "You can get some great covers for it" and I was asking where the plug in keyboard for AOL was, of course there was no keyboard and no covers. She just looked at us, pretending it was ok,... "it's a bit big", I think she was in shock...which I countered with the "you should see what you can do with it though", but then I had to crack , I couldn't watch her anymore, we all went into histerics, I don't think she had any idea what we were laughing at until I spelt it out and we gave her the 'real' phone. Unfortunately the video camera had tripped, I think it was pilot error, and I had stopped it recording instead of making it record, which was disappointing because that expression was priceless, oh aren't we cruel, oh well, there's always next year hehehehe. We normally spend Xmas in the UK, although it was cool here, we did miss the snow, it just helps to set the scene, anyway it didn't seem to bother santa.	Cool! A Nissan Skyline Tom & Nic by the tree
Thanksgiving Thanksgiving was good, we had a veggie meal (as we did with Xmas, veggie turkey etc) and Tom ate well, which isn't like him right now, we took a trip out on the boat which is always nice, in fact we put a quick picnic together, grabbed a little table found a quiet corner in the lake opened up the canopy and had lunch out on the water, it was great. We turned up the radio and I swear I could have fallen asleep for an hour, but unfortunately the kids had other idea's once we ate they wanted to drive around...darn. Almost time to celebrate! If you noticed at the top of the page, the counter is almost at the 365 day mark. One year out of transplant! We're not sure whether or not to have a little party. The important thing here is that Duke's data shows that the chances of him being cured of this cancer is 98% if he makes it past the one year! We still have lots to do, but this is of course a big milestone for us. Say "Hello" Hope you enjoyed this update and the new format with the photo's. Please let us know you passed by and sign Toms guest book by clicking here :)	Tucking into his veggie Thanksgiving dinner.

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