Hi folks, well it's a record, the longest gap for an update and therefore this is probably a record update in terms of it's content, it's been hectic and we've been working hard to get our lives back into some sort of order, still lots to do, but we're a lot closer, I kept putting the update off until tomorrow.. finally tomorrow is here :) .. A lot has happened so I've broken it down into separate sections, we have:
- Medical Situation
- Universal Studio's/Halloween Horror Nights VIP trip
- Boating
- Trip to Duke
- Other Trips out and about
- Visitors
- General Chit Chat
- Other People
Tom is continuing to recover, it's a slow road, but things look good. We do have a problem right now with the kidneys again and the toxicity, of his medications, creatine level is on an upwards trend, over the past few days it's gone 1.9, 2.0 , to 2.2 today, so it looks like an increase in hospital time again, lots of clinic visits and blood work, at least the clinic is good at getting him in and out of there real quick. We can get there and back including blood work in little over 1 hour. Tom is still taking a lot of meds, his prednisone is down to 5mg a day, and it will probably stay that way for a little while, certainly a few more weeks, then he goes to 2.5mg and eventually 2.5mg over other day until he's off it. He also still gets pentamadine treatment every month, which is a breather treatment for the lungs to help protect him and also also cytagam every month which is other peoples antibodies which also helps give him extra protection.
As I mentioned in a previous updates, his results from the 9 months studies were great, 75% of his immune system working, compared to the previous 50% at 6 months, also 100% donor cells (100% cancer free). In 53 days he will be one year out of transplant, and I believe that there will be a 98% chance of him being cured!! Of course he'll still be on some med's for a while and there will be other treatment related issues, like secondary cancers, cataracts, reoccuring graft vs host disease, the list goes on and on, plus he'll never go out in the strong sun, it can make the GvHD come back and/or give him skin cancer, so life will never be what it used to be. Once we get the results from the 12 months studies there is a possibilty of him going back to school, but to be honest at this point I'm unhappy with that and may keep him out a little longer then he can start a fresh year. He's doing very well with his home school, in fact he's been doing math from MENSA! The teacher is VERY impressed with him, he's a smarty pants. Once we reach the 1 year mark, like many, in fact most BMT patients, we'll probably celebrate it as his new birthday, which is good as it's 6 months apart from his real birthday, so if you have any idea's email me mark@thekassars.com. The only thing we had issues with was his lungs which are only around 64% of so of normal, apparently it's treatment damage, it may get better, but probably not, he does ok with it, but has never really got into anything that would require a large effort on behalf of the lungs. So there you have it medically, he's doing pretty good, it's just a very, very.....very slow road to full recovery, or at least as recovered as you'll ever be!
It actually went cool in Florida!
Just hanging out by the pool
Universal Studio's VIP trip
A few weeks ago I wrote to Universal Studios to see if we could get a tape of the Bell and Ted Show at the Halloween Horror nights, we would have liked to go but it was to busy there for him. To cut a long story short, they invited Tom to come to the show as a VIP, they'd back door him, no crowds and even keep the full rows of seats behind and in front of Tom clear! Free tickets the whole deal... how could we refuse? :) .. It was a difficult decision, on one hand we want a life back and we all loved the show it's a real laugh, on the other, we've been Sooooooo careful with Tom we didn't want to do anything that would cause him any problems..So, we grab our stuff and off we went :) .. We decided what the heck, mask him up and off we go.
We had a great time the show was real good, they have impersonations all the current 'characters', Eminem, Osbornes etc.. the Osbornes were REAL funny, as you can imagine if you've seen them on MTV! After the show we went into one of the haunted houses..Some of the sounds effects were so real, then I realized it was Nic screaming LOL. As they never stamped the tickets when we went in, they let us use them to come back another night. They arranged for a special assistance pass (no lining up) and we revisited a few nights later, Tom did very, very well, he literally walked around the whole park (it circles around) now that's a long way! He got a little tired towards the end, but hey, no more than I was.
Oh, and at the end of the show, when everybody was moving out of the stadium they brought Tom up and he met all of the actors in the show plus the people involved in product and the writer, they presented him with a large signed poster board and some t-shirts, he thought it was awesome!
To think once upon a time, in a far away world, actually around 2 years ago, nobody would go to the parks (aside from halloween) we just could not be bothered, I remembered sitting there when things were normal, and yet this night was so much more special than any of them ever could have been, it was a milestone, there we were enjoying life like everybody else, well ok, we didn't have to line up ;-) ... I remembered those days back in the UK when there was no hope, and then all those days on the transplant unit, wow... this must have been that light at the end of the tunnel that everybody was talking about... I wonder what next year will bring! At school...making friends again...YEAHH!!!!!!
We have to say a big thank you to Kevin and Judi at Universal, they were sooooooooo good at putting all of this together, no way in the world would be been able to do anything like this without them. In fact Judi even gave me her cellphone number for the 2nd night incase we came unstuck and needed assistance, she wasn't even working that night she was at home!!! It's so good to meet nice, genuine people that understand the troubles we have (and have had) and are willing go the extra 1/2 mile to help...Kevin... Judi... Thank you from all of us =:-)
Waiting for the show to start
Tom with Spiderman after the show
Tom with Judi and Kevin from Universal
Boating
Well.. If you took a good look at the current photo on the home page, you would have noticed that yes, that was indeed Tom, inside a tube LOL ... The water has finally returned to our lake entrance, so we can get the boat out now. I ummmm and arrr'd a little and after taking Dangerous Dave out on the tube that I was capable of pulling Tom carefully without throwing him out of the tube, and yet still make sure he has plenty of fun with it. Now that winter is here and we have had some nice cool late afternoons/early evenings, we've been doing plenty of boating, we hit the chain of lakes and just cruise around in nice 70 degree's of coolness.. or is that heat? Depends where you're from. Everybody takes turns at driving, Nic, Amy and Tom. Toms actually pretty good although he can scare me a little sometimes, I think he has a need for speed, and the boat will pull well... it'll push beyond 52mph which is moving on the water!
Last night we stayed out until the sun was almost going down, it was one of many fantastic sun sets, nice bright red sky going down over the lake, however, here's a little quiz for you, what do you get if you cross the following... Dusk...And a narrow entrance off a lake into a lagoon with more than it's fair share of saw grass and cats tails (a bit like reeds).. oh and it has to be in Florida...(this is our entrance to the dock)... give up? A ...excuse the French...bloody big gator!.. As we entered the channel, the point where there is NO turning around, out jumps a gator, well actually I saw it disappear just as we went around the corner but nobody believed me at first, thought it might be something less sinister like a turtle, but as we get around the corner, there it is, right in front of us, we had nowhere to go, neither did the gator, and this was substancial, probably 6 feet or more. I knock the boat into Neutral for a second, blast the horn a few times and then decide it's time to move forward, not before everybody gets into the center of the boat, I have to admit it was rather scary, as I moved forward it jumped under the water, no room at the sides.. where did it go? I have no idea... I presume either under the boat. although the Prop would have been in the way.. or the same way we were going.. As soon as the coast looked clear (it took all of about 2 seconds) I flew throw the channel as fast as I possible could and we made it back alive!
I was thinking of doing some wake boarding but that really put me off.. anybody else fancy it? :)
Tom ready to go tubing
Trip to Duke
Time has flown by, we took Tom back to Duke mid October for the 9 months studies. To save on the costs we did most of the tests at Florida Hospital as they cut us some slack with discounts. It was the usual long haul up there, I think it took us around 11 hours or so in each direction, fairly uneventful really, we hired a mini van the day before so we had more room, plus didn't have to rack up over 1,400 miles on my own car :) ...We met Dr Kurtzberg and she was pleased with how Tom was progressing. As I think I've previously mentioned it looks like she wants to lower his medications a lot slower than originally anticipated, and it could be anywhere from 6-12 months before he's off everything, which is no fun for Tom, more potential side effects, more hospital time for blood tests, and then of course more $$$, some med's are real expensive, as much as $1,200.00 per month. Not really much else to say about the Duke trip, we left Wednesday, got there in the evening, saw Dr K and had a PFT (lung) test on Thursday, and then left Friday morning, the minivan barely had time to cool down.
It's nice in a bitter sweet way I guess to see the old nurses on there, I guess we left an impression...what us? .. No .. how could that be possible LOL, Tom was very well received in there by the nurses, we got a real nice welcoming back :)
Tom & Mark at the beach
Other trips out and about
In an attempt to enjoy life a little, and reduce a little stress, whilst not putting Tom at too much risk, we've been venturing out a little, pretending we're totally normal now. Whilst Dave was over from the UK we drove down to St Pete's Beach to watch the sun set, darn, it was cloudy, still it was nice to sit on the beach and relax for a few minutes (a few minutes is all I need there), the weather was nice, sun just going down, with a breeze, and the humidity was not too bad at all. After that we went over to a restaurant that we like to go to, grabbed a nice meal, jumped back in the car and drove back, do we live on the edge or what ;-)
Whilst Dave was here...oh and btw: I did point out that tubing with the boat, going to the beach etc is NOT our real, normal life, but we can pretend, we also took a few hours out to go to 'XS' the cool video game place that we've been to on a few occassions... 2 hours of just games..games and more games... game on.
And to top if all off, Tom had not been into a mall for almost 18 months, so one quiet morning we took him to the West Oaks mall for a look around, I think he really enjoyed the freedom, naturally he wore the mask, he wanted an electric wheel chair, not because he's struggling to walk just for the fun of it, but I would not let him, I told him to get used to being a normal person again. We also went to the food court and met up with the guy on the 'Italian place' who has known Tom for many, many years and often sends lots of food home with Nic and Amy when they go to the mall... Lunch was on him :) .. Well he said Tom paid for it, but I didn't see any money exchange hands!
Amy & Tom at a previous trip to XS
Visitors
We've had a visitor from our of town, but of course if you just read the paragraphs above you already know that. Dave Haynes, AKA Dangerous Dave.. for those of you who don't know him, let's just say, I think something is missing in his head somewhere, he just doesn't seem to understand the word fear... hence... We had him flying off that tube a few times more than I would have liked to! Shame he wasn't here when we came across the gator, I'm sure he would have liked to have roped it in LOL. Again, just for those who don't know who I'm talking about, I've known Dave since we were..well.. this is a bit of a joke as I always compare things to Toms current age, but seriously, since I was Toms age, we went to high school together etc, so he's known Tom forever. Tom was very happy to see him over here and didn't want him to leave, I'm still not sure who is the craziest... given a chance, I think Tom might just tip the scales.
As I've pretty much described above, we managed to get a lot of activities in, hopefully we'll see him back here with his family in a few months.
Tom, Chris, Dave and Mark, waiting for the Sun to go down at St Pete
General Chit Chat
Getting away from the medical situation both Amy and Tom have been doing very well with their education. Amy just got her GPA of 3.99-5.0 which was excellent. Tom also got all 'A's aside from one subject, which was a 'C' however he wasn't happy about it, he felt it was wrong, and had me question the teacher, it turned out it was indeed an error and he was due an 'A' so it was all straight 'A's , so no need to ground him for 6 months afterall.
Beginning of October Amy had her first High School homecoming, she had a real good time, especially getting all dressed up (see the photo to the right)
Amy with Tom, ready for homecoming
Other People
We are very pleased to see that our good friend Beth is continuing to recover very well back in the UK after her transplant just a few months ago, heck, she has better counts than me! We're looking forward to the whole family coming over here at the end of 2003.
Unfortunately, all though I am able to bring lots of good news about Toms recovery and we hope that this will continue, this is all too often an unforgiving disease, unfortunately at the beginning of this month, we received extremely bad news when our dear friend Andrew Lee passed away. Andrew was a great kid, this news saddened all of us, our thoughts are with his family.
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 :)
Tom, Amy and Beth before we left the UK in Dec 2001