Oh boy what a delay on the updates! Ok, I'm useless I admit it. Seriously, it's been very, very, very busy and although I shouldn't, I kept saying 'I'll update tomorrow'.. yeah right we know how that works. Lots of things to tell I'll try and keep each section brief otherwise this could turn into a mini novel.
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Some of our Ex-Palm Lakers at Toms 1 year celebration |
It's been a little bit of a roller coaster with Tom, for some time he just seemed to continue to recover, albeit slowly. We managed to get him down to just 2.5mg a day of prednisone (steroid - which helps stop Amys cells attacking him - GvHD, a few weeks ago we were able to put him on 2.5mg every other day, however that morning he woke up feeling like he was going to vomit, he just wasn't right, and this is before we had technically changed the medication, it just so happened that Amy had been ill for the last week. From this point on things didn't go too well, his eating slowed to next to nothing, he had nausea every day and started to vomit around midnight-1am, this went on for quite some time and we ended up increasing prednisone to 2.5mg twice a day. The nausea just didn't seem to want to go away so I suggested adding Zofran anti-sickness medication, the results of this were almost instant, so for the last 4 days he's been taking it and we've managed to knock the nausea on the head, and he's started to eat at last. His weight is down quite a lot due to all of this, he last weighed in at 30.2kg (66lbs), we're hoping that at clinic tomorrow his weight will have gone up a little.
New Year
Happy New Year to everybody, we had some 'special' fireworks that we brought down from the last trip to the Carolina's, the type you just can't buy around here hehehehe. We were planning to light some fireworks, and also go out on the boat so that we could watch the firework displays from all of the theme parks, Disney, Universal... It's supposed to be an awesome show from the water being able to see them all. However, as anybody in Orlando will confirm, it rained.. and rained.. and rained some more... tons of it.. So all those plans went out the window. Chris K stopped over so, as usual Chris and Tom played games all night long. It would have been nice to get out maybe and do something, but we can't complain, the previous New Year was certainly not a happy one, as we had just been admitted to the transplant unit to start Toms workup and Tom was receiving radiation and we were facing the unknown.
Trip to Magic Kingdom
Game on, we went out for a day. Basecamp a local charity sent us free tickets to any of the Disney parks. We decided that we'd go to the Magic Kingdom for that real 'Disney feel'. We were a little nervous about going, with all those nasty germs out in the big wide world, Tom is like the boy in the bubble we don't really go to many busy places, especially a theme park, this was a first since diagnosis in 2001. First off we went into the Alien Encounter, it was jammed with people, as you would expect. I then started wondering if this really was such a good idea, Tom was fastened into the ride, and all I'm thinking of is.. germs! And what if his heart kicks of now and we can't get out of here. You know the usual stuff that goes through your mind when your having a family day out at a theme park...Yeah right.
Tom had a wheel chair, the park is rather large and he just didn't feel up to walking it all, he probably could if we would have pushed him, but it would have taken forever and we didn't want the day to revolve around Tom getting from 'A' to 'B', so we threw him in the chair and..wait for it... And grabbed our special assistance pass...yeah! no lining up! It was cool, Tom always wanted to go on the 'rockets' but the line is always huge, not any more, straight to the front, Tom being in the chair with his mask on most people didn't seem to bother, I think a lot of people didn't want to seem to be staring at us, but I think a few wanted to string us up, can't blame them 40 minutes lining up for us to walk to the front hehehehe.
Tom hadn't been eating much at all for some time, so we were pleased when he decided to have some soup and managed to consume most of it, highlight of the day for me ;-) ... We did lots of other rides including the rollercoaster type ride Rockey Thunder Rail Road, I was a little against it, but got voted down on that one, Tom really enjoyed it, he says he wants to do a lot of the things that he was previously scared to do, ummm wonder if that hypnotherapy we did back in the UK really did stop him being scared of roller coasters!... nah...he's all talk.. one day I'll take him to the Hulk ride and see if he backs out.
Oh I almost forgot, we also had Grandma Jean with us, although we've moved many times since Toms diagnosis, she just keeps on finding us ;-) ... We really wanted to go to the Osborne Family Spectical of Lights, a display at MGM Studios which has all of their backlot houses covered in Xmas lights, literally millions of them. We thought the passes were one park but it turned out that we could hop, so we hopped over to MGM, unfortunately the ticket we bought for Jean was not a hopper, but I managed to talk our way in there. The lights were really cool, we drank hot chocolates from flashing Disney cups, we had a real good time.
Roller blading Dude!
Tom and I on the Disney monorail after a long day
Main Street - Disney
Rockets = High = Where's Nic?
Bar Mitzvah
We almost didn't make it, but we managed to drag Tom out for what turned out to be a really good night. We were off to our good buddy Andy Stimmels Bar Mitzvah. Andy went through elementary school together and he and his always been there with us throughout all of Toms treatment, right from the start, right up to today.
Tom had been a little up and down for the last few days, and didn't feel too good before we left, suffering from nausea and a general unwell feeling, but after a rest and a little drink decided he could make it. We really didn't think we were going to make it and it would have been so disappointing, especially since I had put on a shirt and tie!!!
We were a little late, but better late than never. This was our first 'public appearance' and we were rather nervous especially with it being indoors, and of course it was real busy. The children were sat on one side and adults on the other, however Amy and Tom, who had not been out for a long time either just weren't up for that and sat with us for most of the evening, eventually Tom said he'd like to go sit with Andy, so after having a little chat with the main man Monte and dropping $10 bucks in his hand (joke), he had Andy come get Tom, and off he went for a little while. It was a really good evening for us, we all really enjoyed ourselves. Watching an intoxicated Monte do the birdie dance I thought was of particular interest. Of course things were not quite normal, we met quite a few people that were familiar with Toms situation and would come to shake his hand, and he'd explain 'Sorry, I can't shake hands', just a little reminder that life is not the same. Although after going through all this, I'm paranoid myself about shaking hands with people...urgh..germs... nasty....must.....wash.......h...ands.
I was pleased that we were able to go the distance and stay beyond midnight!!! I think that evening was a real turning point for us, a demonstration that there is a light at the end of the tunnel.
One Year Out!! Party Time
Well we made the one year on January 8th 2003. Toms counts were 'iffy' and he'd been up and down himself so we had decided that it was just not possible for us to take him anywhere, however on the last minute I decided that perhaps we can do it the old fashioned way, rather than movies, pizza restaurants etc we'll do it all at home. We decided this around..err..24 hours before the party, so Nicola compiled a list and I hit the phone. I had to try and interigate everybody to make sure there was no illness in the family and unfortunately a few people did have, and were therefore unable to make it. However out of all the people that said they can come, I believe all of them did turn up. It was mainly made up of Toms friends from Palm Lake elementary School. We ordered in lots of Pizza 'n' stuff, about 4 times too much (you know me), and he just hung out with everybody and opened presents. It was nice to get together with people. We were amazed at just how much some of his friends had grown, Tom would just tell them straight out "I've not grown in 18 months, it's the radiation treatment"..darn
Nicola picked up a frozen yoghurt cake from TCBY unfortunately it appears that the guy that did the writing on it didn't have a dictionary....'Congrad's' ... umm..oh well, made us laugh, we did forget to get the cake out, nothing to do with the fact that I love frozen yoghurt cake, honest.. and then I forgot to take a photo...darn...All in all, a good night.
Oh I almost forgot, we did have a special guest star appearance.. Toms old teacher, Mrs Winton, (I don't mind old teacher as in over the hill)... I had invited her but I guess failed to mention it to Tom, it was a little hectic getting it all together in just a few hours. For those of you that have followed Tom from the start, Mrs Winton was Toms last teacher (and previously Amys) and we love her because she always seemed to buy my excuses for when Tom and Amy either hadn't done home work or were late to class ;-) She also flew over from France (whilst on vacation) to the UK when Tom was in hospital there!...Tom was VERY happy to see her and said it really made his day....oh and it made mine too Jean :)
Zoster/Shingles Update
After some amazingly painful weeks weeks which brought Tom to screaming tears over 7 times a day, the shingles is gone. After a few more weeks we weened him off the neurontin medication which was supposed to curve the pain in the nerves, although I don't think it really had much effect on him anyway. So that is now official history.
CT scan results - Osteoporisis, Gallstone
Bits just keep falling off. We had the one year check up running all the tests at Florida Hospital. It appears that the long term use of the steroids is taking it's toll, he has mild osteoporosis in his spine. We're going to talk about it more when we get to Duke in a few more days, an email from Joanne suggests that there is a chance it will improve. On top of this, his lungs showed another decrease in their function (We're re-running the test at Duke) and he also has a Gallstone, apparently a small one, we'll also chat about this when we get to Duke, unfortunately it appears that Florida Hospital missed the gallstone, it was picked up as we sent copies of the CT scan films up to Duke for a 2nd review...ummm..we'll be talking about that also.
Tom has a Personal Trainer
When you have little to do but a few hours of homeschool it's difficult to get motivated. Tom plays a lot of games, there is little else to do during the day, and we really wanted to see him exercise, unfortunately we don't have time to work with him on this with so many other things going on and I was worried we might do something that we shouldn't and cause more harm than good. We want to see him increase his lung strength with what remaining lungs he has left, plus increase his cardio vascular activity, so we have employed the services of a personal trainer to work with him twice a week. He has just started this, he does mild bike work and stretching at the moment so she can gauge what he's capable of, so far so good. He also has to go on the bike twice a day. I was also interested in light weight work to try and strengthen his bones, I think the whole thing will have a positive effect on many aspects of his health and lifestyle.
Sick Days
As you will have already guessed from the rest of this update Tom has been up and down, and for some time rather down, lots of nausea, and some late night vomitting. We were so close to getting him on prednisone 2.5mg every other day, instead Dr K ended up doubling the dose to 2.5mg twice a day, very disappointing as that day we were supposed to be going on the new dose. He had not been eating well for some time, his weight was continuing to fall, his bottomed out at 30.8kg, around 68lbs. We were unsure whether the vomitting was related to a virus and not GvHD as Amy and others had been sick days before, however it's not always possible to tell and certainly not something to be gambled with, I did pursuade Dr K to give him 24 hours to see how he does, but he just never really picked up. Over the past few weeks though he has been a lot better, eating better each day, weight is going up very slightly and unlike Tom he drinks like a fish. All of this is reflecting in some really good counts (some helped along with prednisone). White cell count: 5.4, neutrophils 70%..or 3.78, an ANC of 3,780. Platelets increasing also, and currently 196 and hemoglobin is pretty good for Tom and 10.5. His BUN (Liver) is good at 16, the drinking is paying off, and his creatinine (Kidney) could be a little better, but not too bad at 1.1
Looking at him these days you would never know he was sick, he's really back to his old self again, although stamina is certainly and issue, I doubt we could go on a very long walk, and I don't think he'd handle a sports game very well, but we'll work on that one, we'll fix him up somehow :) ...The only tell tale now is his hair, which continues to be an issue, it's just very thin indeed and not growing well. He had it cut the other day, so hopefully it will thicken up, right now he looks like he's on radiation, especially where it was shaved at the back and sides.
Oh..oh.. how could I forget! We got the results of the FISH test, he remains 100% donor cells!..in otherwords also 100% cancer free.. Dr K confirms that he is 90%+ chance of being cured! Although we've cured the cancer, there is not doubt that we have also traded it for many long term side effects. We're still doing clinic runs at least once a week, still getting Cytagam (infusion of anti bodies from other people to help protect him against viruses) every month and pentamadine (lung treatment to protect him) once a month, so we still continue to live and breath the life of a sick child, nowhere near as sick as last week, but still sick. As time goes on I hope we can get him off the medications, and with the exercise, being careful where we take him we'll have him back on his feet and ready for the germ pit I mean school, after Summer.. although I have to say the thought of sending him to school even is a rather scary prospect, getting ill from a virus will involve far more issues still than a normal person.. Oh, we've stopped the anti-nausea (Zofran), 3 days ago, and he's doing just fine, it's really nice to see him full of life and eating :)
Off to North Carolina
We're off again, 630+ miles, each direction. We live one day, sleep that might, re-run the PFT (lung test) in the morning, see Dr K... we then leave, to drive back south, this time we're going to stop in Savanna so we're closer to home, then later the next day drive back to Orlando, all in all, around 24 hours drive. I guess Sheila in Australia can relate to these long drives.
New Toys
Tom has a new toy. He has his X-box wired up to the Cable Modem, and we're using the 'X-box live' so that he can play games across the Internet, it's VERY cool, wish we had this when he was on the unit! He has a headset so that he can actually talk to the other players, and with it being the Internet players can be anywhere in the world. Right now he plays with his friend Derek and also with Chris who recently joined 'the team'. He currently plays Mec Assult and Unreal Championship. If there are any other folks out there that have the same system please contact us, the more the merrier!
Late Breaking News
I wrote this update between jobs over a couple of days, just before uploading it we went to clinic (today) and I'd like to share some great news, Toms counts are better than ever! Record breaking in some departments like hemoglobin! We have White Blood Count at 8.4 with Neutrophil of 62%, giving an ANC of 8,400 @ 62% = 5,084! Platelets 165, and hemoglobin at an increased 11.2 bring it for the first time since diagnosis, without a transfusion into the 'normal range', there aren't many 'Lows' and 'Highs' flagged next to these counts anymore!
Say "Hello"
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Amy and Tom at the Bar Mitzvah
Andy and Tom at the Bar Mitzvah
Amy, Jean and Tom, 1 year celebration
Amy gets $100.00 (can't leave her out). And a VERY funny card from Tom, can't post it on the site, it was too rude (I don't know what we're going to do with him!)
Tom exercises AND plays X-Box live at the same time. Oh no shoes, due to many ingrowing toenails (Radiation made them drop off)
Skater dude. Can't believe he is back on them!. Umm ingrowing toe nails not bothering him that day