I can't believe I left it so long to update! Wow..Time flies.. Well I'll cram as much as I can below. Naturally the good news is that Tom continues to do well, yep, he's alive and well and at school!!! Yes I know the lyrics to this Black Sabbath are probably not suitable but hey, it's got a great beat, and I had to have an ozzy song in here!
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View from the hotel top floor restaurant! (Santa Monica) |
Tom continues to do very well. He's still on quite a few medications. FK506/Tacrolimus, prednisone 1.25mg once a day, Cellcept 1000mg , all anti-rejection meds, plus acyclovir to protect him against the shingles/zoster virus, Difflucan due to the previous small fungal infection in the throat, Pepcid AC to stop the meds burning up his stomach, atenelol due to the previous heart issues that have not occured for over a year now! YEAH!! and a multivitamin.. oh and magnesium.. quite a few to swollow each day. In himself he's fine, plenty of energy. The lowering of the meds has been a lot slower than we had hoped as Dr K wants to do it that way in order to avoid the reoccurance of the GvHD (When Amy's cells attack him - can be serious and most definately fatal if not treated correctly). I believe we'll probably start to lower after our visit to Duke, scheduled for Jan 2004, and it might take as much as 6 months to get him off all of them. He's not grown yet, which is disappointing, as we don't want to go down the path of injecting growth hormones if we can avoid it, as that carries a risk of the leukemia returning, we will just wait and see. Hair is a little thin still, we're still hoping that once the FK med is stopped it will start to grow again, it is a little thicker, but not much.
Wedding
Just before going to the UK my sister Nadia got married to Cliff, Amy was bridesmaid and Tom was an escort. The wedding was at Rollins Chapel where she went to college. Everything went well and we managed to stop until the reception finished, Tom even mananged to have a dance.
Trip to the UK
We made it back to the UK in July, we were very excited about getting back to the UK. We made several trips to favorite spots including Blackpool, Castleton, and to London to see our new Dr over there where we ran several tests, blood work, scans etc, so we didn't have to put out the usual thousands of dollars over here. We also celebrated Toms 13th birthday by going bowling and then took over Pizza Hut, it was so long ago I forget, I think we had around 32 people. Oh we visited our good friend Beth at Toms old hospital. We also managed a trip to Derwent Valley, where we fed some wild sheep..cool. Whilst driving down to see Richard Burns (as below) we stopped in Birmingham to see the MaxPower show, hundreds of cool tricked out cars (Thanks to Stu and Bob for getting us in after it closed!)
Tom gets to drive with Richards Burns!
Whilst we were there we were invited down to Castle Coombe to the Under 17's meet, for those of you who do not know, Richard Burns is one of the WRC rally drivers, and previous world champion! They set up a car for the day just to Tom, even had his name on the side window as co-driver, and a little union jack, it was an awesome day! They buckled him into the car and then BOOM, took off like a bullet out of the pits! You should have seen Nics face, it was soooo funny, he did a few laps with him with some handbrake turns etc. The whole team was just awesome, nothing was too much trouble, a very memorable day. Tom was also made an honerary member of the under 17's drivers club. The event wsa featured on TV (Channel 4) and in at least two magazines, I have yet to see the TV program, but have seen him in the magazines, very cool!. I was aware that Richard Burns had passed out a few days ago, today we were deeply saddened to hear that Richard has been diagnosed with a brain tumor! Sometimes is seems that there is no escape and everywhere we turn somebody is being struck with a cancer of some form, perhaps we just never noticed it before.
Tom goes back to school
Yes, he finally made it back to school in August! We were all rather scared but Tom didn't seem phased at all, but then nothing seems to bother Tom, sometimes he can be difficult to read, as I tell friends, he'd make an awesome poker player! Even though he missed two years of school, he managed to stay in the same grades and entered the advanced classes. In his last report card he managed to get four 'A's and two 'B's. He seems to have friends at school although none of them ever make it over to the house.
'Make-a-Wish' - We visit 'The Osbournes' in Beverly Hills!!
As a big fan of the Osbournes show, as in Ozzy Osbourne and family. Tom made the wish a few weeks ago and we were amazed to get a quick reply which included an invite to their house, we couldn't believe it!! I'll try and keep this short'ish otherwise I'll be rambling on forever.
We were picked up by a black limo, at a mere 5am! urgh... and flew out at 7:30am, getting to L.A. bright and early, around 9:30am local time as there is a 3 hour time difference from Orlando (They are behind us), picked up our rental car and had somebody from make-a-wish take us back to our hotel in Santa Monica, with another family that travelled along with us (They also wanted to see the Osbournes). We were located just back from the beach near the pier, and walking distance to some of the shops. Oh, we got an immediate L.A. experience, when a guy ran in front of our cars with a bag in his hand, and two security guards chasing him. We were scheduled to be there for a few days. On Wednesday we just hung out and went to the shops, we ate at the roof top restaurant which had a cool view of the mountains and the beach. The weather was really nice, raining when we got there but that cleared and it was sunny and fresh, although cold at night so we had to buy jackets to stay warm.
Thursday we went to a taping of the Sharon Osbourne show at the studio, it was really funny --> We went in a black limo with the blacked out glass, as we were waiting for the security clearance, people would walk around the car asking us to put the windows down, they obviously thought there was some super star in there, funny, they could not see inside, you should have seen the faces we were pulling at them (joking). Unfortunately there must have been some sort of miscommunication of some sorts as we ended up waiting outside with some other people for around 2 hours, and it was really, really cold, when we got in the studio we found it to be really cold! and I mean COLD, we'd been warned but I didn't expect it to be so cold. A guy came over, I think he was some sort of floor manager and gave Tom a cardigan to put over him to stay warm, Sharon Osbourne I guess had found out he was cold out there and was kind enough to send her cardigan out, and yes we did give it back so don't ask LOL. It was a brightish green color, so keep an eye out for Tom on the show.
The show was very interesting, we had to do a heck of a lot of applauding. They had a warm up comedian that keeps things going between the breaks, he was really good, I wish I could remember some of his jokes!!!! Rod Stewart was the guest, the rest of the guests were taped previously, I can't say that I'm a fan of Rod Stewart, but in all fairness I have to say that he did sing really well. We didn't get to meet anybody that night, although Tom got to meet Sharon for a minute or two whilst she tucked him in to keep him warm =:-) , it was really busy.
Next day (Friday) it was time to go to their house, off we went in the limo up to Beverly Hills, it was a little scary, we didn't know what we were in for. The limo dropped us outside and we walked in through the electric gates, whilst passer by's in cars tried to grab a sneaky look. We were greeted by somebody and led to a sitting room, a few moments later two girls came in to offer drinks and welcome us and to also let us know that MTV camera's are there also!! When I heard the camera's were there I didn't know what to think, although I can tell you everybody looked a little scared :) . They had a camera man and two sound guys, at first you're trying not to look at the camera's and pretend they are not there, and at the same time try not to say anything could potentially make you look stupid. Sharon came in first, followed by Ozzy and then Kelly, Kelly was good enough to wear a mask that we had with us as she had bronchitis, unfortunately it was one of the thick blue ones.
We had a good chat with them about the kids and cancer in general, and of course we talked about what we all missed about the U.K. it was really cool, we could have talked to them all night, not because they were who they were, it was like we'd just popped around to a neighbors for a chat. We moved on to the dining room for snacks and drinks, they had loads of english chocolate and my favorite drink, lucozade, Sharon took Tom to the kitchen to choose a drink, he tells me that he was interviewed on the camera, I don't know exactly who said what to who, so we'll have to see what if anything turns up.
It was funny that Ozzy missed the chippy's and the British bread, the first things we stock up on whenever we manage to make it home to the UK. Tom was desperate to see all the dogs, as many of you know Tom (and Amy.. oh and Nic) wants a dog really badly but I won't have one. From what I remember they have a mere 10 dogs, if you've seen the Osbourne show on MTV (or channel 4 in the UK?) you'll know that they have a LOT of dogs. Both Amy and Tom spent a lot of time playing around with the dogs, but it got really funny, when Amy noticed that one of them had some poop hanging from it's butt. and then as it walked on Tom, is sat on Amy, and I think you can guess the rest, next minute we have Amy freaking out and camera's rolling, it was increadibly funny, just glad it wasn't me! ;-) . As the night went along Kelly had to go record some tracks (they have a studio at their house), Jack had to go and Ozzy also had to go help with the recording, so we floated around and watched, it was interesting to watch to recording. Later on that evening we left in the limo, it wasn't until later that I realized, we didn't have a single autograph, and we had really hadn't taken a lot of photo's, we didn't get one with the whole family and our family which is what we would have liked, I'm hoping I could possibly mail something to them for signing.
Oh, I forgot, Tom got a huge bag of Osbourne 'stuff' way too much to fit into our bags, so we're they offered to ship it back to us, good job actually because when we got back one of our cases was totally destroyed and I mean destroyed, like, they threw it out of the plane 5 minutes before we landed, definately a total loss, and they made us change everything into a new case rather than just replace the case, like we needed that after getting off a plane!
On Saturday, we went for a bus tour of the houses, well, what can I say about that, let's just say I don't think we'll go on one of those again. The driver was a piece of work, 'I used to smoke pot with ozzy' etc.. Unfortunately you can't see many houses due to the walls and tree's, fancy putting all that stuff in the way! ..Anyway we saw quite a few, like Steven Spielbergs, Jennifer Lopez, John Travolta, Playboy Mansion and quite a few others, we also stopped at Venice beech, the muscle place where Arnold Schwarzeneger used to work out. Sharon Osbourne asked us to stop for more photo's but the bus driver said he could not do it, I think he was a psycho that had a restraining order on him, so I put in a call to Sharon, yes she gave us her home phone number, and no, you can't have it, you have to bid on Ebay with everybody else.. JOKE!!!! and I managed to get Tony, Ozzy's assistant, he was increadibly helpful, real nice, down to earth guy, a Manchester United Fan and a big BMW fan, oh a formula one fan as well, man after my own heart, although they had 75 people at the house filming a xmas special and Kelly had gone down sick so they had to redo everything whilst everybody was waiting, he still managed to hook us up with Ozzy for a few minutes whilst we grabbed a quick family photo (and the cool photo of Tom and Ozzy). Oh I almost forgot Shannon, one of Toms (and our) favorite nurses from the Duke transplant center now works in L.A. around 60 miles from us, so she had driven over that evening to meet us, so lucky her, she tagged along with us for the final Ozzy meet, I thought it was really funny when she said she wasn't nervous, until I turned the engine off, opened the door to the car, 'ok, let's do it'.. suddenly reality sunk in, and she was definately a little nervous, hahah.. sorry Shannon.
Overall it was a great experience. I must also mention that make-a-wish did an absolutely awesome job, volunteers all the way, first class hotel and limos, they really did do a spectacular job, and because they gave us 4 days we ended up with a mini L.A. vacation.
Just a note about L.A. the traffic sucks, big time.. I guess like London in rush hour, just busy, busy all the time, bumper to bumper at times it would takes us an extremely long time to get anywhere, I don't know how they put up with it! They are also rather aggressive, they like to push in a lot, but hey, I'm a British trained driver, I can handle that and give back as good as they give, and a little more LOL (laugh out loud).
General
What else is going on? Toms still working with Amy (another Amy) as his personal trainer, we're trying to keep him in good physical shape. December 13th 2003 we're coming back to the UK for the holidays...YEAHH!!!! Tesco's bread.. Ozzy will be jealous... When we return from the UK, the following week, we also fly up to North Carolina, to see Dr Kurtzberg at Duke, and hopefully fly back the same night, and then we get to settle down, although I'm sure something else will turn up.
Oh, has anybody found Dr Stevens yet? For those of you that don't know, Dr Stevens was Toms old Dr in the UK that totally failed to treat him successfully. A few months ago he just disappeared, leaving his ID and car at the hospital, turning off his phone and never to be seen again. I'd like to ask him a few questions, so if anybody see's him, let me know ;-) . Click Here for a photo and more info.
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The Kassars at Nadia's wedding
Blackpool, U.K. (outside Alice in Wonderland)
Tom & Amy with Fast and Furious car (MaxPower Show)
Tom and Richard Burns ready to fly outta there!
Tom with the now traditional 'boobs cake'
The Kassar's and Ozzy
Tom, Sharon Osbourne and Lola
The Kassars and Jack Osbourne
Amy & Tom with Kelly Osbourne
The Two Dogs and Tom
The Kassar's on Santa Monica Pier
Mark and Tom on Mulholland Drive (Hollywood hills behind)
The Kassar's with Shannon and Cassandra