Finally another update! I've been very, very busy, so it looks like the updates will be a little spread out from now on, especially since things are so good with Tom! No news --> Good news.
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Eating out at a mall in North Carolina, like normal people! |
Well we didn't make it up there on the first date we set, it turned out it was Daytonna race week... too much traffic to get through, and there was also an ice/snow storm in North Carolina, making travelling very severe, not a good idea, so we iced those plans (gotta get them jokes in where I can) and set it for a few weeks later, 12th March 2003. The journey went as well as it could have done, making sure we had as little in the way of stops for gas, food and emptying the bladder we managed to get the journey down to 10 and a half hours, with the same on the way back, about as good as it gets.
We'd done most of the tests in Florida months before, this was mainly for Dr Kurtzberg to check him out and also to re-run the PFT (lung test), as you know the lungs were an issue, as they continued to go downhill, with him being in the low 50%'s after hemoglobin adjustment, we were told there was a chance they could improve but it would be slim, they normally repair by around one year, with such low lung capacity it posed a few issues, first of all no more full transplant, it would be too much on the lungs, of course we hope we never end up back there again, but having options is always a good thing, the other thing, Tom was starting to feel the effects, full deep breaths were not comfortable for him, and he was just not firing on all cylinders. Although we were told it won't really do much for this condition, we decided to hire a personal trainer (Amy .. Not our Amy), twice a week to work with him on buidling his bones back up and getting those lungs working. We were VERY happy almost in disbelief to hear that when we tested them in Orlando in January they were in the 50's still, the Duke retest showed around 78% with adjustment!!! AWESOME... A normal person is 90-100% so we're making progress for sure!
Whilst we were there we managed to bump into many of Toms old nurses and Dr's, we also made sure we visited the transplant unit. Dr K was certainly very happy with the progress he has made. And that was that, a quick visit, with some great results.
Medical Situation
Tom still continues to have a sore tongue, a few sores at the side that tend to flair up, Dr K believes it is GvHD and therefore wants to keep his meds where they are for yet another 3 months which was disappointing, in the hope that the cells will settle down, if we come down quicker on the steroids she feels the GvHD will kick up again. We'll start lowering the FK506 Tacrulimus (immune supressive/anti-rejection) after 3 months and then work on the prednisone steroid if all goes well, looks like 6-9 months more before he could be med free. His hair is still not growing too well, it's very thin and whispy still, we're not sure if it's ever going to improve, it could be GvHD or unfortunately permanent due to the radiation, only time will tell.
The good news is that because Toms counts are so stable now, she has agreed that we can go to clinic every other week, rather than each week..YEAHHHH!!!... Only twice a month.. wow.... one day will be a full day with his Cytagam infusion (antibody infusion) and Pentamadine treatment (lung protection from pneumonia). Looks like these treatments will continue through to the end of the year. Other great news is that Joanne thinks we should start to work towards getting Tom back in school in August 2003. We *ALL* have mixed views about this. Nic thinks that it will be great for Tom and will make him feel more normal too, but there is the obvious concern about infection risk. While Tom has his port in his chest if he ever gets an fever it means a trip to the emergency room for IV anti-biotics, so this would be a major problem, aside from it costing thousands of dollars to get ER treatment, I just don't want him getting sick unnecessarily. He won't be getting his port taken out for over a year from now so. Tom likes the thought of being back with friends as it's very difficult to keep in contact with people, he still only has a couple of friends stay in contact, but does NOT want to do any school work, be there all day or have any homework.
UK Visit!
Now we've got all that boring medical stuff out of the way, here's more good news, we are cleared for take off... as long as Tom does not have any complications, in June we're good to fly! So...June 18th 2003, we intend to hit the road, jump on a plane, and land in sunny England... 18 months since we left, it goes without saying we're all very excited! Although I think I'm more excited than everybody else, we'll be there for 3 and a half weeks. Tom will turn 13 whilst we're there, so we'll have to figure something out when we get there. We're looking forward to meeting with everybody, don't forget the ballons and banners at the airport ;-) .. We'll also be bringing Toms good friend Chris with us.
General Stuff
Well, the kids have been off school this week for spring break, which was nice, no getting up at ridiculous hours (For Nic), no homework. Tom was real busy with Brandon and Chris as well as Amy with several friends so the house has been rather busy, just like the old days! The weather has been real hot though, up to mid 90's at times, URGH,no fun in that it's been way too hot, although today it rained from morning to night, just like the UK. Amy went out on the boat the other day, and managed to get fried in the sun, hey I told her to make sure she had sun tan lotion on, "Yes, I've got it on" ummmm... she won't do that again in a hurry!
A few weeks ago Tom went to two birthday parties! On the same day. First of all it was Allanah's birthday, and then Brandons, can you believe it both parties on the same day, almost at the same time. We went to Allanhan's first over at the Hard Rock Cafe's new museum, watched his dad record a record in the recording both (funny --> Sorry 'big' Chris) grabbed some food and then had to rush over to Brandons to catch the end of his party over at Hooters, yes Hooters, ummmm....For those of you that are not from the USA, you might want to check out Hooters.com (This link will open in a new browser), funny! We just hung outside for a while it was busy inside whilst the kids played, it was good to see Tom get out and about. Oh, and the other day we went out to Dinner with Chris and family and 10 or so friends, great night, good pizza! And later on went to Chris's houses where they played outside for a while, and Tom played some basketball, things are definately improving!. Then last weekend it was Chris's birthday and we went out to dinner with him and his friends and then over to his house where Tom had a lot of fun running around and playing basketball with everyone.
I'm trying this at the hospital offline whilst Tom gets his monthly Cytagam, we just had to walk from one side of the hospital to the another, which reminded me to put a note in here about something, for a long time Tom has lagged behind whereever we walk, not anymore, he's gone... way ahead.. I can no longer keep up with him! I don't remember the last time he was able to consistantly stay ahead of everybody, all signs that things are getting better by the day.
Well that's about it, we're looking forward to seeing everybody in the UK, drop Nic or myself a line if you'd like to get together
Tom with Dr Kurtzberg on our latest visit to Duke
Tom just giving some advise on the PFT (lung test)
Tom and Amy waiting to see Dr K
PFT time. (lung test)