CURRENT INFORMATION

October 28th 2002
I know the updates are behind and I plan on updating any day now. But I have a news flash! :)

We just got the results from the 9 months studies.. 100% female.. donor cells.. Tom remains cancer free!

October 8th 2002
Hi everyone,
Another update from me (Nic).......not that I don't like doing these updates, it's just I don't feel I have 'the gift of the gab' quite like Mark does, so I always try to encourage him to do them, but he's a bit busy and there's quite a lot gone on so I felt I should do it.

OK, first off, It is actually Tom's 9 month post transplant day today Oct 8th (DAY +273) I can't believe it's been 9 months since he had his transplant, when Amy and I were brought back from surgery/recovery but were hurried off to another room and not allowed in Tom's room as the crash team were all there and then the chaplain met me in a little side room along with the wonderful Nurse Practitioner Stacy to tell us that Tom had had a reaction to Amy's cells and the crash team were with him, but he was doing OK. WOW...what a nightmare. He has come so far since then, obviously we still have a long way to go, but we're extremely happy with his progress.

OK, back to routine, Tom's counts last week were cool. Platelets were finally in the 'normal' range for the first time since he was diagnosed May 2001. 159 (normal is 150-450). Mark's were only 162, but we won't go there on that one yet :-) So what an achievement this was, we were all happy but didn't celebrate or anything. His other counts were about the same as previously, still on the low side, so I guess his little body is busy making just platelets. His weight has dropped slightly which he's happy about, he's down to 38kgs and you can tell the difference. His face has slimmed down since the decrease in the steroids and the weight loss, something else he is very happy about. Healthwise he's doing good, stamina still not back to normal, but doing OK. His skin looks and feels fantastic, very soft and smooth and the old signs of the skin GvH have almost gone completely off his legs. His only problems right now are his ingrown toenails, this happened because the TBI makes your nails fall off and when they've grown back they came in really weird on his big toes and are cutting into his skin, so we have to bathe his feet twice a day and put anti-biotic cream on, to stop them getting infected. We apply Vitamin E to his scars (war wounds) once a day too and the few stretch marks on his legs and these are definitely fading over time. He is down to 15 meds a day which is OK, he doesn't have a problem taking them and has always been really good about it. He keeps having a little problem with nausea every couple of days usually in the evenings but once he's slept he's OK again. Hoping that this isn't a bout of GvH, Dr K says she doesn't want to rush weaning his meds until he's OK. So fingers crossed.

We are still doing weekly visits to clinic for blood counts, and once a month Tom has the Pentamadine that he has to inhale in the plastic tent, and this helps to prevent him getting pneumonia and once a month he still gets the Cytagam which is anti-bodies to help him fight off anything that he might get. I am really hoping that when Dr K sees him next week and his counts are all good that we can maybe cut down on clinic visits to maybe twice a month and maybe cut out the Cytagam too, but who knows, Dr K has her own way of doing things and she's the expert so whatever she says we do :-) Of course a lot of this will depend on the result from his immune studies that they are going to do next week too.

We are heading off to Duke next for a very long drive 12 hour drive (each way). Get there in the evening, off to clinic next morning for the big blood draw and then 2pm to meet with Dr Kurtzberg. Then hopefully we will be able to go to our favorite restaurant called 'On The Border' for some delicious Portabello Mushroom Fajitas, it's really cool they have a partly enclosed outside eating area which has big heaters on for the cooler months, then we can go back to the hotel and catch a movie and rest before the big drive back home again on Friday. They are of course going to do the FISH/blood test which will tell us hopefully that he still has 100% donor cells. We should get the result of this the week later. This is a big important test as the further away we are without incident, the better his chances of not relapsing. So fingers, toes and anything else that crosses crossed too please!

We had all the 9 month tests done here at Florida hospital last Friday, but Dr K. wanted the blood fresh so we're doing that part of the 9 month studies at Duke. It was a loooooooooong day, we had to be there at 8:30 as his first appointment was 9, and didn't get out of there until 6pm after spending lots of time in waiting rooms and we actually went back to the car in the middle of the day where I had a 15 minute nap and Mark and Tom watched The Simpson's on DVD while we had an hour gap between appointments. Tom did great with the tests, the Pulmonary Function test went well and he was sooooo good, the lady that did the tests said he was the best patient she had ever had and wished they were all like him. She was an unusual woman, won't go into it too much, but when we asked how he did which we always did at Duke and they told us there and then, well she went into ROBOT MODE and said "I'm sorry I can't share that information" with this stupid dumb fake smile on her face, Mark and I just looked at each other in amazement, what the heck, this is 'OUR' son we're asking about, after trying to ask her again we gave up as it was obvious she had been programmed not to talk.....LOL! Then we spent the rest of the day having X-Rays, Echocardiograms and finally onto the CT Scans which took a long time, but the guy was really cool who did it and once again told us how great Tom was, he never complains and just does everything they tell him to. He really is wonderful! The bad thing about the CT Scan was that he had to have an IV started so they could put the contrast into him, so we arrived for our appointment on time at 2:30 and after much waiting, complaining, asking where the heck everyone was etc. at 4:30 the IV team finally turned up (actually one lady with a little cart, what happened to the team?), anyway, to add insult to injury, she put all the 'sterile' stuff onto a dirty chair and then attempted to inject into Tom without washing her hands. At this point Mark was ready to lose it and politely but firmly insisted that she wash her hands, to which she was astounded, but did actually go and do it but had to add a little comment that she had "just done it but you can't wash your hands too much can you". Oh well, 2hrs being stuck in a waiting room brings out the worst in you, so she's lucky that Mark didn't totally lose it on her....LOL! Yesterday we got the results from the CT which showed perfectly clear, and the Echo which showed good results on the heart, but the test was incomplete because the video tape didn't work. URGHHHHHHH!!!! GIVE ME STRENGTH! We won't get the X-Ray or Pulmonary Function Test until next week as someone has to read it.... and???? why it takes 10 days I have no clue!

Anyhow, enough complaining, we actually got invited to Sea World with the Give Kids the World foundation last weekend, we checked with Dr Kurtzberg to see if it was OK Tom went and she said it would be if we stayed outside and didn't go into any of the shows etc. Well, after much debating we were all disappointed but decided it wasn't worth the risk. It would've been busy, and there's lots of water everywhere which inturn means Mosquito's, something we want to avoid, especially with the West Nile virus going around. Plus there are bound to be lots and lots of germs everywhere so we knocked that idea on the head. Tom wasn't too bothered as we've all been like a zillion times before. There is a Day at Disney on December 7th and 8th that we can go to, so we will see nearer the time how things are going and might make it to that one. They are also doing a weekend away at the Coronado Resort for families in December too, so that would be great to make it to that if we can. It's really funny because one of the nurses at Duke asked us what we would do as most of the kids like Tom choose to go to Disney World, but we already live here....LOL! Been there, done that and oh yeah bought lots of T Shirts!

Before I forget, I just wanted to make a point here to thank Chris & Erica and also Randy & Lynda for letting Chris and Brandon spend so much time over here with Tom. It really makes a difference when Tom is just chilling with his friends and he just loves to have them over to play with. Because we always seem to be so busy all the time with school, hospital etc. I sometimes forget that Tom is missing out on spending time and mixing with his friends every day, and this is really important to him, so it means a lot to him when his friends do come visit.

Tom has been having a blast with his new found freedom because of his platelet count is good he can be a bit more adventurous, he had an electric scooter a few years ago for his birthday and has really enjoyed using it again. Unfortunately Mark has had to tag along on his bike and try to keep up with him...LOL! Amy and I also went for a walk around the neighborhood with him on his scooter, but he got a bit stressed about it cause we were walking too slow and he had to keep coming back for us. I think he prefers it with his dad on his bike. The other night Mark and Tom went over to the Marina, Tom on the scooter and Mark trying to keep up as usual, Amy and I met them over there and we just hung around for a few minutes, just enjoying the freedom :)

It's really nice to walk out early in the evenings, the weather has certainly cooled down a little bit, and it's beautiful now. In the mornings when Amy and I leave to school around 7:15 it's about 73 degs which is wonderful. One day last week it was only 70 and as we walked out to get in the car Amy looked at me with a shocked look on her face and said "It's cold"......LOL. Not exactly cold, but certainly cool. I love it like this, it was so nice when we all went out for a walk the other night the sun was lowering so the UV was low and there was a tiny breeze. AHHHH BLISS!

Now onto the rest of the Kassar clan. Mark is finally feeling better and over his bout of illness. Not sure what's happening about his counts yet, he is going to have a retest in a couple of weeks, so we'll see what's happening then. I'm not worried really, I know everything's going to be OK!

Backing up a bit, we managed to get the perfect dress for my perfect daughter. It took us a few hours, lots of trying on, and hanging around in changing rooms but eventually we got it. I got a few pictures of her and her friend Jennifer getting ready and then a couple when she was totally ready with Tom, so when Mark has downloaded them from the camera I will add them on the site. I am really disappointed that they 'forgot' to get the pics taken at homecoming, so we don't have any of her and Jonathan together. But she's just as disappointed as I am because she wanted them too. The dress was perfect and she looked beautiful. Auntie Nadia came over and did her hair for her which was awesome, she had it in a roll at the back with curls on top (thanks Nads) and Grandma Dot came over too (just for the tea I think LOL!) and Denise brought Jennifer over to get ready too, and everyone else tagged along, I don't think I've ever had so many people in my house :-) The kids were late going because things didn't turn out as planned, and then when we were leaving Jonathan realized he'd forgotten his ID so we had to go to his house and get it, then I dropped them off (about 20 mins each way) and when I got home Mark met me at the door to say that Amy couldn't find her ID and thinks she left it in the car, so I found it and had to drive it back down to their again, so by the time they had done all that it was almost 10:15pm......but they all enjoyed themselves at the end of the day, so I guess that's what's important.

I found this link from someone else's site, it's from Duke's site and when I was looking through it, I found that Tom was in one of the pictures. So click on the link and scroll down through a couple of pics and there he is in the waiting room with Brianna sat at the computer. http://cancer.duke.edu/PBMT/tour/out_patient.asp

I also want to add some pictures that I found that shows the port that Tom has in his body, just so you non-cancer parents and kids can take a peak at what this is all about, and also a little picture of someone having their marrow taken out which is how it was done on Amy (yuk/ouch)! What a wonderful sister she is. So if it's on then Mark did it for me when he updated the page, but if it's not it's because he had an excuse not to do it ;-)

Finally, I just wanted to wish our good buddy Beth the best luck on her transplant journey. She actually had the transplant in the UK on September 27th 2002 and we have spoken to her a couple of times and things are running smoothly, but she is starting to feel discomfort and is now on morphine to help her combat the pain. I still can't believe that they are actually having to go through all this that we've already been through and are just starting out with it all. I really wouldn't wish this whole business on my worst enemy, the whole thing is a nightmare and for kids to have to go through it is even harder. So good luck Kevin, Sarah and especially Beth, we think about you all the time, miss and love you guys and hope that things continue to be uneventful! And Sarah I hope I haven't made you cry again......LOL!!!!!

We are at clinic tomorrow for counts and Cytagam, so I might try to add a little update with his counts. Bye for now.

September 26th 2002
Tom had the usual labs taken on Wednesday, and yet again things continue to move in the right direction, with another increase in platelets to 137, we're pretty sure that the highest they have ever been since diagnosis was 139, so a record has almost been broken. Hemoglobin is a little low, sitting at 9.0. He's doing well, he gets quite a few headaches which are probably the large amount of medications that he still has to take.

Off the subject of Tom I thought I'd cause a little trouble myself. For some months now I have an increasing number of tiny red blood spots appear on my arms and chest, I thought it was time to ask a Dr, who better than Toms oncologist :) ..He suggested they might be something called petechia, however he also suggested it would be a good idea...wait for it... to do a CBC (blood count).. oh too funny...well we had to laugh. That was last week, he wanted to do it there and then, but I declined, I had no emla numbing cream.. hey why suffer... So I went this week armed with my emla, but I guess it hadn't been on long enough as it REALLY hurt.. Tom said I embarrassed him, the nurses thought it was funny, ok, so I'm a big whimp!

It got interesting when I received the results a few minutes later, my platelets were on the low side, not horrendously low, but low, at 162, they should be anywhere from 150 to 450, and then Dr Hajjar says "Now I don't want to make you worry but.." .. It turned out my white cell count is too low at 4.2, when it should be from 4.5 to 10.5, with 64% neutrophils, it gives me an ANC (this is your ability to fight infection), of 2,688, Toms is 2,201! If your neutrophil percentage was 64% and you had around 8 as you white cell count, then you'd be 8 X 1,000 = 8,000 .. take 64%, and you get 5,120. I also ran this by Dr K and she said the count is ok, and the platelets are not causing the petechia, so what's going on? I'm not totally sure yet. I did have a cold some time ago which could knock the counts down, but that does not explain the ongoing petechia, so we're going to run the CBC again in a month and see what's going on. And that's our twisted life for now. :)

September 21st 2002
Update - By Nicola
OK, left this update a little longer than usual, but once again too busy living to get things done.

Went to clinic on Wednesday and things are going good. His platelets are at 129 which is an increase of 22 from the week before which is great. The highest they have ever been is 138 when we left Duke in May, but this is the highest they have been since they dropped down again. The average for a 'normal' person should be 150-450 so he's doing well there. All his other counts were about the same, on the low side, but I guess that's cause he's too busy making platelets. His weight was down by 1kg, he's 38.5kgs now, which he's happier about, he still has a swollen face and stomach, but not quite as bad. He's not been in the pool quite as much this week, the weather has been wet in the evenings with some storms. Mark, Tom and Chris (Tom's good buddy) went for a bike ride the other day and there were a couple small hills (bear in mind these are rare as this is FLAT Florida), and Tom got really tired and out of breath and had to pull over and rest. Remember he was wearing his mask which didn't help, but he was really struggling, but once he rested and got his breath back he continued with the bike ride and said he'd enjoyed it (It was only a short ride of around 0.5 miles each way). His legs are still sore from it today, so I think he might give that a miss for a little bit. His appetite has reduced considerably, and he only has a bowl of cereal for his breakfast, Peanut Butter and Jelly Sandwhich and chips (crisps) for his lunch 'EVERYDAY' and then whatever we have for dinner. I think he kind of put himself on a diet after they struggled getting his port accessed the last time because of his weight gain, and they had to prod around and eventually go for a bigger needle, he did not like it at all and now dreads his once a month meds that require access to his port. Great news is that his steroid has been cut down again from 10mg to 7.5mg per day, I am presuming that if all his counts are good next week and no signs of any GvH that they will go down to 5mg per day. Then I believe that we will start the process of reducing the FK506 (anti-rejection). He has gone from 2cc twice a day to 1cc twice a day, as his levels were too high last week. We had to go back to clinic last Friday for re-tests as his kidney test on Wednesday was showing an increase (increase is bad), but they were good Friday. Tom's friend Brandon is coming over tonight after school and staying with us and Chris has been great spending a lot of time with Tom, I can't understand how they can spend so many hours on one game system, but what do I know!

We continue to live this nightmare every single day still, granted the situation is not as critical as it used to be, but it's still there and we're still dealing with issues, and will continue to do so for the next year. The thought of the all too common relapse is constantly in our minds, so we're thankful for every day that we manage to scrape by without incident. Until we get beyond the 2 year from transplant date, we can't consider Tom to be anywhere near out of the woods. Tom would love to hear from some of his old friends, so feel free to come visit him. Also, if you visit the site, please leave a guest book message as Tom does read them. Remember Tom has never been to middle school, he left Palm Lake and then everything went belly up on him, in his mind, his friends are still the old Palm Lake gang, he's not had any opportunity to make any new friends since leaving.

People have asked about Tom going back to school, this year is out, there is no chance, after January, there will be a slim chance, however I think it's very slim, it looks like he'll just about be off his immune system lowering meds by then if we're lucky, so it would not be good to go right back to school. Plus he still has to have his port removed from inside his chest, and then we have to make sure that his heart is not going to start beating at 250bpm again, so we need time to make sure he's ok, chances are he he might be ready after March, but that's almost the end of school, and then we'd have to ask ourselves is it worth it, or do we just wait and give him all of the summer holidays, another 3 months to recover. If I had to place a bet, I'd say he's not going to make it all all until the start of 8th grade.

He is a lot happier with his home school situation and seems to enjoy doing Geography and Science over the phone, there are 3-4 other kids that have the class with him, and his tutor comes Tuesday and Friday 9am for Math and English. Initially he had a bit of a hard time motivating himself to get his work done, but now has it all under control. I was a little worried how he would handle getting back into school after 15 months off, but he seems to be doing great, he is flying through the work with his tutor and really impresses me how well he's doing, he hasn't lost his touch :) . He's reading King Arthur and the Knights of the Round Table, which he said is pretty gruesome, but he must be enjoying it or he would've given up by now. Hopefully he will be in a good position when he does return to school. We're still very isolated, his immune system needs to be back up at 100% before he can go into public places. One thing we have learned through this whole process is that there are no certainties and things can change in a heartbeat.

The rest of the Kassar household are doing good. Still feel like we are living in limbo, not being able to continue with a normal life and living this semi isolation, but not dealing with a really sick hospital life either. Mark still has a slight cough from his bout of illness a few weeks ago, but nothing serious. Amy is doing great, loving school and mixing with kids her own age. I was worried about her missing 15 months of school and spending most of her time in and out of hospital with us, but she has done awesome. We are so proud of her. She has been working really hard this week, on top of her regular homework she had 2 big projects due on the same day and although these were group projects she seemed to bring home more than her fair share as she wanted it to be perfect and people weren't pulling their weight (Nothing changes) so Amy being Amy didn't want this to reflect on her so had to work twice as hard, so she was up until 12:30am still working hard on Wednesday, hence she was very tired yesterday morning. We both absolutely hate having to get up at 6:15am every day, it's still dark outside at that time and I feel like I'm getting up in the middle of the night. The best thing is that she's out of school at 2:10pm and 1:10pm on Wednesdays, so it feels like we still have the whole day. She has her first Homecoming on October 4th and so Nadia and Grandma Dot (I needed back-up) are coming with us tomorrow to try to find 'Lil Miss Fussy' a perfect dress. Excited and apprehensive about the trip.....LOL! I have timed it so that Tom will have Brandon over to keep him occupied, but I am still expecting a few phone calls to ask me 'how long will you be' I can't even go grocery shopping without him calling me.....LOL But I'm as bad as him and don't like leaving him either.

I think the only other problem Mark and I have right now, is severe tiredness, people say that things catch you with them and talk about burn out, well it has caught up with us, we're incredibly tired, all of the time, even though we're not doing a lot, when you run on adrenaline for over 1 year, with the massive worries that were inflicted upon us, mix in plenty of sleep deprevation, and I guess it's bound to take it's toll eventually, so we're all recovering right now :)

I think I covered most things. Basically things are running pretty smooth right now. Hope it's not the calm before the storm :-)

September 11th 2002
We went to clinic today for he usual counts. He had a lot of trouble with the port again, it wouldn't bleed back too well, eventually they got some blood out, but then it stopped, so he had to have his IVIG infusion (a nice $1,200 infusion) and then they went back in for more blood, after this it worked ok. They did have to access it twice and use a bigger than normal needle, it didn't go down too well with Tom, I don't blame him!

He did catch the cold from Amy or myself, but luckily he only got it mild, with a little bit of a runny nose and some sinus problems, but overall he's doing real good. His weight is continuing in a downward trend as the prednisone continues to be lowered, right now he's at 10mg and we hope to see it drop again to 7.5mg or maybe 5mg, I'm just waiting for an answer back from Dr K via email. His counts were awesome today, platelets continued to go up, at 107, hemoglobin went down a little bit but is still 9.6, white blood count increased to 3.2, with 60% neutrophils (ANC 1920), so a very good white cell, and of course great news that the platelets continue to increase a sign that things are ticking very well inside.

Of course there are always complications, last week we noticed some movement (in the wrong direction) of the creatinine (kidney), and unfortunately this continued with an increase of 1.7, which is not good at all, this in turn has had a knock on effect on the FK506 (anti-rejection drug), as he is not expelling it as well as he should, so that has increased to 16.9, 15 being the maximum allowed. Luckily Nicola forgot to give it to him today with all the messing around with his port, things got messed up, the chemistries came in just before she was about to give it to him, so we decided to hold back, problem we have is that I'm unable to get hold of Dr K right now, and she's the only person that can really make a decision on what to do. Too much FK can cause neurological issues such as fits, so I'm very reluctant to give him more, I know that it takes a while for the levels to drop, and he's good at the 8 range, so if we don't hear from her this evening, then we're going to have to decide what to do, without it the GvHD could flare up, and then we'll be back several months with steroids etc..decisions.. decisions... Hopefully Dr K will email me later, and there you have it, as usual watching the clock tick by and slowly recovering.

September 4th 2002 Game on. We got back from clinic today and brought good news. The platelets have finally given up and stopped playing around with us, as you know they've been jumping around the 50's to 60's .. today... they were 95! , the hemoglobin was up from 9.2 to 10, white blood count was 2.6, with an ANC of 1742 (67%), the best counts we've seen in many, many months. This allowed us to lower the prednisone to a mere 10mg per day, and hopefully next week we'll get him to 5mg. We do have problems with Creatinine (kidney) level creeping up to 1.3, the FK506 (anti rejection) also crept up to 15.6 so we stopped FK just for tonight, and have to go to hospital again on Friday to get more tests to see how things are going. His BUN (liver function) is holding out well, a couple of weeks or so ago he was in the 40's, now he's down to 28 (lower being better). So that's good news for sure.

We set up the 9 month test today, we're going to go back to Duke on October 16th (Wednesday), Amy has the 17th and 18th off school, so we leave 16th, hospital 17th, leave to drive home on the Friday, the 18th. A flying visit, we'll spend more time in the car, around 12 hours each direction, 24 hours drive time, oh how we're looking forward to that. We won't actually have much to do at Duke, all of the tests are being performed at Florida Hospital, Dr K at Duke agreed to this, the reason is that we're getting 50% off the bills at FL hosp, and Duke aren't cutting us any breaks, so it will save a substantial amount of money. I did ask Dr K if we really needed to go to Duke and she said she wanted to see Tom, it's a heck of a long way to go just to say hi and to be told how well he looks, but Dr K has been very good with Tom, and she's still involved on a more or less daily basis with his care, if I email her Sunday night, I get a reply that night, so if she wants to see him it's the least we can do.

Aside from the above there isn't much else going on, still enjoying the pool, I went in with Tom tonight and it was a nice 94 degrees. Oh his weight is stable, dropped a little to 39.6kg (87lbs ..or for the Brits --> 6 stone 3), we hope to see it start to drop now the prednisone is down. He hasn't grown yet, but we're not expecting anything in that department yet, I believe once we get to one year they'll look at whether to use growth hormones. Feel free to sign that guestbook, posting is slowing down a little :)

August 28th 2002 I'm sick! Sorry I had to start off the update with the news that I have a cold, Nicola was laughing saying that the only reason I was updating was because I wanted to tell everybody I was sick, so there you go, I told everybody LOL. Actually it all started with Amy, there were a ton of kids in her class that were sick with colds, within a week or so of school she comes home with a cold... oh just great... so we keep her away from Tom, go mental on the hand washing (Even though we already are), and hoped that Tom didn't get it, and so far so good, problem is that I got the darn thing, the snotty nose, the really sore throat, so I skipped clinic today and Nic went on her own. We're hoping Tom doesn't get anything, I'm wearing a procedure mask whilst in the house with him just incase. Welcome back to the real world eh? I've not been sick in over 14 months, those schools are such a pain, major germ pits, this confirms that it was indeed the best decision to keep Amy out of school in Durham whilst Tom went through the most critical time of his transplant.

Now, back to Tom, after all it is his site LOL .. He's doing ok, he's stable, counts are up and down by just a few points each week, this week platelets managed to crawl up to 69 and hemoglobin 9.4, up from 9.3, so things are getting better, a few weeks ago he was only 9.0 with platelets in the 50's, it's just real, real slow. He plays a lot of video games right now, and swims almost every night, up to 50 lengths. Oh, his weight is down a half kilo to 39.5kg. He has a friend over every so often, maybe every 3 days somebody will come over for a few hours, I'd like to see more friends, so, if you're an old Palm Lake'r etc and you're free of a cold (see the 'what you need to know before visiting tom' on the main page) then feel free to give him a call, I'm sure he would love a visit

We do get out and about a little, ice-creams from TCBY's and of course the chinese veggie restaurant. School is still a little bit up in the air for him, I met with the teachers as they mentioned he could get a tutor as he hated the teleconference thing, he flat out refused to do it, but when I met they told me they can only tutor 1 or 2 lessons, so that's something else that we have to deal with.

We're still battling it out with Duke on the outrageous bills, it's with our lawyers now, so there goes more money. I had a chat with Dr Kurtzberg at Duke and explained that we have a substancial discount of 50% from Florida Hospital, and we're up for the 9 months check up soon (1st week of October), but of course that is going to involve more expensive testing, several thousand dollars worth, so Dr K agreed that we could do the vast majority of them here at FL Hospital to save the $$$ and then take the results up there, all we're going to do at Duke is a complete blood count (CBC) and the FISH tests to see the percentage of male vs female cells.. let's hope for 100% female again, plus of course visit Dr K, so we should be able to get in and out of there fairly quickly. We recently traded the minivan for a car for me, the minivan was our choice of transportation as it had so much room, so we decide that we're going to hire a conversion van with the big comfy seats, the built in TV etc, through in the playstation and a PC and we're all set, of course we'll have to find somebody to volunteer to do the driving now, whilst the others travel in style, taking in a movie or two on a good sized screen will help pass the time, the 12 hours or so can really drag, plus we get to put 1,200+ miles on the rental. I'm hoping we can make this a very brief trip, although, Dr K's clinic is Tuesday I want to travel up on Sunday to avoid the traffic, so we'll probably have one day of doing nothing in Durham.

Well that's about it, we're just watching the clock, and waiting to celebrate that 1 year at the end of this year, at that point we hope that we'll have Tom off many of his meds, counts will be better, and restrictions lifted a little, that's the theory and of course it's only a theory right now :)

August 16th 2002
Well there's not a lot going on, comparatively speaking of course. The usual Wednesday visit to the clinic, where Toms counts continued to improve, with platelets going up to 68, hemoglobin dropped a shade to 9.6. WBC 2.5 with a good solid neutrophil count 70%+. He's doing great, although the prednisone continues to load the weight on him, he's putting on around 1kg (just over 2lbs) a week, he last weighed in at 39.9kg, a real heavy weight. However the good news is that he continues to feel well 99% of the time, so the prednisone steroid is still being lowered each week, he is now on 20mg in the morning, and none at night, he was on 20mg a night also, it's take 4 weeks to get down to this point since the start of the wean. One problem we did have, or Tom did, is that they could not get his port to work when he had his monthly IVIG, they ended up doing a bit of jiggling around and flushing, they also had to increase the size of the needle to 1 inch, because he has put the weight on there's more to go through, it hurt and he was not impressed at all.

The only problem we had was the creatinine level (kidney) started to show signs of trouble again, going up to 1.0, so we had to go back to clinic on Friday, luckily it came in at 0.9 so we're hopefully still on track, so next visit will be Wednesday as usual.

As I mentioned in a previous update Tom started school, it wasn't what we expected, it was only sorted out on Friday, and school started on the Monday. The paperwork asked questions that suggested (as they did in North Carolina) that a one on one tutor would be sent, however when I met the teachers I find out that they do it through the telephone with a speakerphone, so I'm loaded up with a phone and books and on my way. Toms a real smart cookie and I didn't really feel that this was the way to go for him, anyway, we gave it a shot, I have to be honest it went quite well in the first lesson, aside from the fact that he kept having to repeat the answers 5 times and sometimes they didn't hear him. Anyway, after a few lessons, he became very agitated about it all and flat out refused to do it. I spoke with them and explained that we didn't feel it was appropriate for Tom and he was not keen on it either, so I have another meeting, apparently they can send a tutor, I have to get the details and see what is offered/entailed, if we don't feel it's right for Tom then we're going to hire a private tutor. We feel we're at the point now where we need to make sure than when he finally goes to school he has to blend right in, perhaps be number one in the class thanks to all those private lessons, no way am I having him bottom of the class, he deserves a lot more than that, we're not worried about him, his so sharp that he'll find his feet quickly. Another problem with the 'hospital homebound' was that we would have a lesson in the morning for 45 minutes, then another in the afternoon, and one late in the day...a couple of hours work spread over a day in such a manner that we can't go anywhere, so we're all housebound.

Amy is panicking at the moment there are a lot of sick kids in school, 3 in her class and a teacher was sick! Why these people are in school I have no idea, they really should not be allowed in, especially the teacher, regardless of Tom being sick I think it's just inconsiderate, no wonder illness spreads so fast. We've spoken to Dr K and we're going to keep our eye on her, and let Dr K know if Amy gets sick. Amy is not allowed to hug Tom, share drinks, touch anything that he touches, or get too close, but here's the real difficult one, she's not allowed to give him a kiss, she must be heart broken LOL .. No problems with all of the above, we've always been very careful anyway, and there is plenty of handwashing, especially before Amy enters the house from school, as we're used to all of this it's no big deal, no changes. If she does go down with anything I'm not sure what we'd do, aside from let Joanne know, anybody want a sick kid for a week? ;-)

She has been feeling a little off, but getting up at 6:15am to be in school for 7:30am, not eating at regular times can do that to you, so she's under observation, we'll be putting her in a tent at the bottom of the garden LOL , actually totally off the subject there was a huge snake skin next to my pool equipment today, a good 4 foot, and I also more or less bumped into a 4 foot black racer snake, but it was too comfortable to jump out of the bushes and rip my throat out, it was basking in the sun in the bushes right next to the garage, I have to admit I jumped back a little, think I might have sworn LOL. OK back on Tom, he's been very keen on getting himself into shape, eating better, more healthy foods, using the treadmill, the exercise bike and swimming every night, he swims a considerable amount of lengths. Well that's about it. Keep your eye out for new photo's, Nicola has been working on them so we should have them on the site fairly soon.



August 11th 2002
Sorry for another late update, well not much has changed medically. Tom is doing ok. The reduction in steroids continues which is good as the prednisone makes you put on a lot of weight and he's unhappy with his rounded face, last time he weighed in at 38.8kgs (85lbs), another record! He's on 20mg day, 5mg night, if the counts stay stable then they can keep reducing them. His counts over the last two weeks were up and down a little, but stable enough to reduce the steroid, platelets in the high 50's to 60's, HB keeps creaping up, now at 9.8, WBC 2.6 with a good 70-75% neutrophil, chemistries pretty good, including a good low creatine level (Kidney), although BUN (liver) being a little too high at 40. Magnesium is an issue, as he is up from 1200mg a day to 2000mg, as it keeps going down.

We had fun last weekend though, his heart tripped and off we went to the emergency room...URGH. they had to inject adenosine to stop the heart, then it restarts on it's own and regains rhythm, of course this carries a little risk! It worked ok, and we got out within a couple of hours, we were concerned about him catching something there but all seems well. Whilst driving there I paged our doctor and he gave them advance warning, plus I paged Dr Kurtzberg at Duke to make sure she was ok with us going in there. We went in a back door and into a room, but the room was not filtered, they don't have them! And Tom could not breath with his mask on until his heart was back to normal, he was running around 185bpm. I talked with Dr K about the removal of the port and once the platelets are stable at greater than 100 she will consider removing it, we're hoping that it is the port that is causing the issues! Otherwise we're up for more trouble.

Aside from the above, the days are just ticking away. Amy is starting school after a MASS of paperwork and phonecalls we finally managed to get her graduated from 8th to 9th grade, as she never finished 8th grade (officially) as we were moving between the two states, and we had to get her in a school that was now out of our district. Thanks to the help of Jeff her old tutor in Durham and the new principle and Lynne Fineberg of Chain of Lakes, we managed to get it all together, there were many others as well, it was real tough. She tested out and made it into the APEX program, which is an AP program that will allow her to gain credits in high school for college (should she decide to go), I believe she can gain as much as one years college credit! We just hope it's not too much work for her (and us). Tom also starts an education program tomorrow I'll write a little more about that in the next few days.

Now that the prednisone has been removed, we have seen Tom have less mood swings. He also continues to do his swimming which is great for getting him back in shape, but I've had a bit of a difficult time balancing the water temp with the solar, as the temperature controls are never 100% accurate, plus we've had quite a few heavy rain spells. We swim at night to avoid the sun exposure, so I try to push the temp up during the day, we have it set at around 92..nice and warm, but I did have it at 96 the other day..whoops... I shall continue to experiment, although tonight it's only 88, if it's below 92 Tom refuses to get in, and I though I was a whimp! I have to admit, below 92 you do feel the chill, although it's not really cold.

On another note, Duke continue to be 101% unreasonable on our bills, which we know are between 40-60% above what is reasonable and customary as we have had them audited, I've exchanged email with the top person there, and they won't budge, so it's time to rumble... and bring on the expensive lawyers. They just won't settle at a reasonable amount, they seem to be fixated on charging me considerably more than anybody else, I don't think so!

So it's busy, busy, busy as usual, always some new challenge, at least hospital is now only once a week. We're still trying to finish up things in the house that was never finished, sometimes we feel like moving for a fresh start, but we know that in reality that would just cause even more headaches, so perhaps we'll stick it out for this year and try to get everything else in order, anybody want to buy a house ;-) . Seriously though we really do like the house, it's in a great location and nice and private around the back, but for me there is a certain stigma attached to it, everybody else is fine with it, but I know that Nicola would also consider moving if the right house turned up, whatever that may be. I can't think of anything else.

July 30th 2002
Finally an update! Sorry.. It's been hectic as usual, trying to get our lives back in order, there has been so much to do here and I just kept putting it off until 'tomorrow'. There's quite a bit to tell so it's going to be a long update:

July 10th we saw Tom celebrate his 12th birthday. We quickly gathered as many names together as possible using his old school photo, remember that Toms last interaction with his friends was actually in elementary school, we realized afterwards that we left a few people out, if you're one of those people..sorry. It was difficult to find somewhere to go, away from public, non physical (platelets issue) so carting and skydiving at I-drive were out, also not in the sun. I got hold of the manager at the Muvico movie theater at Point Orlando, I consider this to be the number one theater in Orlando, to cut a long story short the manager was a 10 year cancer survivor and understood everything we had been going through, he was very obliging, he shifted the schedules around so there was a 10am showing and gave us our own theater (We also had to check on the air conditioning to make sure they brought a percentage of air into the building so it was not 100% recycled), how cool was that! There were around 25 or so people, they got popcorn and a drink with the movie, although Tom had to have the nachos and cheese that he had waited so long for. We saw Mr Deeds which was pretty funny. Afterwards we had pizza and more sugary soda to keep the kids buzzing in their party room which we filled with people and presents. It worked out very well, and we can't thank the manager enough, aside from telling people to USE Muvico, it's much better than West Oaks! ;-)

Tom got a lot of presents, one in particular he just loved, only our British counterparts will get this --> I managed to get him an original ITV Digital Monkey, a character off a TV ad, a comedy act thing.. VERY funny. He loved it, I had actually tried to buy it off somebody on Ebay and when I explained why I needed it they told me I could have it and they were glad they could make Tom happy! extremely good of them, it really did make the day, he had a huge smile on his face, he's wanted one for such a long time. Thanks to everybody for coming and making it a special day for Tom, and thanks for the presents, Nicola did get some 'thank you' cards, all she has to do now is open the packet and write them :)

Just before his birthday his cousin Jack and grandma Jean came over, Jack for two weeks, Jean for 4 weeks. They could do a whole lot due to our ongoing restrictions but that didn't bother Tom or Jack due to their big game addiction, all they needed was a big TV and a Playstation 2. We did make a trip to the beach with them (and a 2nd trip the other day) Tom can't go out in direct sun, due to skin cancer risk and GvHD risk but that's no big deal, we drove down later in the day, around 6'ish, and got to St Petersburg beach on the gulf coast (Or to our Ali G friends - Namely Jack 'and meself'... the 'Westside' -- In joke..if you don't get it, sorry you're not in) we got their just in time to watch the sun set over the ocean, nice warm evening, ocean breeze. We actually went to a spot we had previously visited with friends just weeks before leaving for the UK for vacation at which point the troubles began. We then went to a Greek restaurant over the road and enjoyed a meal outdoors, everybody else was inside so we were fine, a little rain started to come down so we had to shuffle the table around a little but it was all good fun, hence the 2nd trip, we can get there in under an hour and a half, it's only 102 miles away, that's nothing compared the the 623 miles each way trips that we have made up to Duke, and by the way we have another trip in little over 8 weeks. Although Tom did not go near the water for fear of bacteria, I have checked with Dr K and she says he can kick of his shoes and step into a few inches, so next time we'll be taking towels.

We're enjoying the pool as well, Tom likes to get a good swim in when he can, we swim in the evening to avoid the sun, the solar is working great, in fact I turned it down so the water did not get over 92 degrees in the evening, it's our big bath! Although we've had a few late evening lightening storms so it's been a little difficult at times, not a good idea to be in the water when you hear thunder or see lightening, we have enough trouble this year without frying somebody!

Somehow we've managed to keep busy, Tom got his radio controlled nitro car going after we got a few modifications done at the store, and he bought a new shell for it, so between the 3 of us, Jack, Tom and myself, we spray painted it (we all masked up and ventilated the garage of course), and cut stickers out, it actually came out very, very well, I won't mention the fact that I stuck the scalpel into my finger LOL (I can laugh now).

The counts stabilized, at a low point, platelets 50's last week, so we managed to start going to hospital just once a week at last! Although it was a Monday and Tom likes to stop at the Chinese vegetarian restaurant on the way back as it's around the corner from the hospital, so we changed it to Wednesday, which ended up giving us a record breaking 10 days off hospital. So Wednesday is our next day, how it will go I don't know, but Tom has been rather tired today, and I think he looks a little pale, therefore I'm concerned that the counts have not come back up as we would have liked. He woke up early this morning, the steroids make him get up real early, but was asleep for a good hour and a half from 10am onwards which is not like him at all.

Overall Tom feels pretty good, he eats well and feels fine, the only thing that he does not like is the effects of the higher dose Prednisone steroid, this drug does tend to load on the weight, especially in the face (AKA 'Moon Face'), we're hoping to see a reduction in the steroid, the next blood count will indicate whether this is possible or not and Dr K. will make that decision as she overviews all the counts and works very closely with Dr Hajjar. Things are going slowly, and we are a little impatient, especially when we compare Tom to another Duke patient Julie who also had a sibling transplant, and she is off all of her meds and ready to go back to school! Tom certainly won't make school for the rest of this year and takes a lot of meds still, we're always grateful that Tom is here, cancer free and doing ok, but we would like things to move forward a little more than they are doing.

Tom did try 'real milk' and ice-cream the other day..TCBY's mint choc and cotton candy, and he didn't become ill, so that was good. The TBI can make you lactose intolerant, that was the first time he had tried milk or ice-cream since transplant in January, he really enjoyed it. We're going to have to build this up slowly though, we would not want to upset his stomach, if we did this we would not be sure if it was the cause, or GvHD was back.

It's not been at all easy, but hopefully I'll have his schooling sorted out soon, he'll be 'hospital homebound', which means he will not go to school this year, but will have a tutor at home. The theory is that he will be registered at a particular school (Chain of Lakes) where most of his friends go, and the tutor will keep him up to speed for the eventual return to school, perhaps in 2003. We're also sorting Amy out, it looks like she will go to the new Olympia high school, we've already had an interview and she her grades are good enough to get her into the Apex program which is a program for around 100 children, this program will actually give her college credits in high school, we have one more interview to take care of and some paperwork, but I'm confident we'll be able to wrap this up for both the kids fairly soon. Amy is celebrating her 14th birthday today, it's actually August 1st, but she didn't want to leave Tom out on the actual day, so she went to Universal Studios with a handful of friends today so she can spend the day with Tom on the 1st, Tom does not seem too bothered that he was unable to go with her today. By the way..This means Amy can now start counting the days down to..wait for it.. a driving permit!! Only 1 year and counting to a driving license.. now there's a scary though.

We got the results of Toms immune studies from our last trip to Duke, yet again they came back at 50% which is pretty good considering the amount of GvHD medication he is taking. I need to get total clarification on this but the way I understand it, Toms immune system was destroyed by the radiation, no doubt there, the 50% are Amy's cells settling in Toms body and developing over time. Why he then has to be reimmunized when Amy has full immunization, I am not 100% sure, but I'll find out.

I think that covers that past few weeks, I will try and keep things up to date.. honest..I promise ;-)

July 5th 2002
Well, what's going on then? Not much. Tom is getting stronger all the time, you wouldn't really know anything was or had been wrong with him anymore, aside from the thin hair (which is improving), on the outside he looks great. He also feels good, no nausea, no vomiting, lots of energy. He is doing a good job keeping up with his exercise program (the one he set himself), combinations of light weights, treadmill, exercise bike and daily swimming. We swim in the evening so that we can avoid the sun, we had a little trouble at first as the solar had a leak when we fired it up, but that's fixed and we're running a nice 88-90 degrees water temp, very nice for an evening swim. The pool is around 8 feet deep so we have a LOT of fun in there, although I'm not sure why Tom should have the ONLY water gun...ummmmm.. I have to get one and get him back in the face, see how he likes it! LOL

We're still running to the hospital twice a week for blood tests, unfortunately his counts are still messing around, hemoglobin is down in the low 8's still although never in a million years would you guess! And platelets dropped today to the high 60's. Although this is always a concern to us, we're nowhere near as concerned as before, since we got the 100% donor cells result. It looks like it may either be mild GvHD still (although no symptoms are showing), or just something related to the amount of medication he's taking. It's just a waiting game at the moment to see how things go. He eats just as well as any of us, and has managed to increase his weight to 34.2kg, probably all that extra muscle from the training :)

He had some friends over including his buddy Brandon who stopped here for a few days, it was great, most of the time we just left them to it, they just went off a played video games etc, just like the times before he was ill, it was very satisfying to see just what has been accomplished and how far he has come, in fact I had a chat with Dr Kurtzberg and she said although it's always difficult to put a firm number down, which is fully understandable, she feels there is a good chance that he has an 80%+ chance that he is now cured! (Of course there are a lot of side effects to deal with as time goes on), no doubt though, the numbers are on our side, Toms strength physically and his incredible inner strength are working wonders. All it took was a lot of hard work, and a world class doctor/facility, we wish that more facilities had such dedicated doctors as Dr K, especially back in the UK, where as many of you know, pessimism seems to be part of the training.

I was also talking to Dr K about a plan I had, we wanted to do something, when the time is right, something that demonstrated we'd made it, we've beaten it down and we have our life back, and what better than a family skiing holiday. We liked to ski each year for the past few years, but last year we missed it for obvious reasons. I wanted to take Tom back up to the peaks of Vail where we previously had a fantastic time and fly down those black runs again. I think that once we can do something like that, then we've made our point :) . She feels there are never any guarantees and we can certainly understand that, but if recovery continues and all goes well, it is certainly a very real possibility. So that's our goal, I believe 11,000 feet+ ... Highest reachable point without a helicopter is where we'll be stood March 2003, the decision has been made :)

On another subject, it only seems like yesterday that we were in the UK having our little private party with our good friend Beth, and the greatly missed 'little Amy' celebrating Toms 11th birthday. Well July 10th it's here again, and Tom celebrates his 12th birthday!! I can't believe a year has passed, what a long road that was. Naturally we are still in a position where we have to be very careful where we take Tom. I spoke with the manager at Muvico, Pointe Orlando, and they were very sympathetic to his needs, shuffled the schedule around and gave us our own private movie theater! How cool is that!! So we're going to go watch Mr Deeds, grab some popcorn and soda, and in true American tradition, we'll polish it off in their party room with... guess what... come on it's easy... Pizza!!! LOL.. I think we'll have a great time. Whenever we do ANYTHING normal now, we never take it for granted, I always think of the times when we sat on the unit with Tom, not knowing where we were heading, Tom being so sick dreaming about the days when we'd pull him through this and start doing all these normal things, and here it is, and it's GREAT. I get a lot of emails from other people suffering from similar and sometimes identical illnesses that Tom is/has been an inspiration to them which makes us all very proud of him, I'm sure he will continue to do so, as he demonstrates that it is possible to beat this disease down.

June 30th 2002
So.. You're asking.. how did the Duke trip go? Well... We started off we a long, long drive... tooks us around ten and a half hours, although we did stop quite a few times. We did need some extra content for the web site, so SOMEBODY.. Nic says me.. I say her.. left a pile of things in the kitchen that were supposed to go with us, we were driving up the I-4 when I thought I better switch on my radar detector (Hey.. I wanted to get there before the sun went down), "ummmm... where is it?" .. I remember putting it with the stuff in the kitchen to bring with us.. with all the medications.. oh yes..if you're going to forget something, make sure it's important.. So back we go for the med's .. One hour later... off we go again.. THEN the ten and a hour hours started.. guess we've all mellowed..aside from a few "Yeah right..Like *I* forgot it" nobody lost their temper LOL ... You've gotta look on the funny side....Although at the time, driving back up the same road an hour later, it didn't seem to funny.. or on the last hour of the journey when we should have been there LOL

So, we get to Durham, check in to the hotel, Marriot Courtyard, adjoining rooms for Tom and Amy, it was adequate for our needs, nice clean hotel and not busy. We chilled out on Monday (next day), we traveled up on Sunday to take our time and avoid all the rush hour traffic, went to visit our good friends "The Jordans", who are STILL in lovely Durham, oh how lucky they are.. Oliver was looking great and they hoped to go home in a few weeks. It helped knowing our way around the town this time, as planned we went in the minivan (MPV) so we had plenty of room as we had many a meal in the back of there, our 'mobile restaurant', we just don't feel confident taking Tom into public still, prevention over cure thing. It was actually very hot there, I know I got into the car one day and clocked up 100 degrees outside temp...ouch, unlike Orlando's rain..rain and more rain, but hey we don't go anywhere, so we don't care (We feel sorry for all those tourist though).

We went into Duke Hospital on Tuesday, had an EKG, X-ray, lots of blood work, they took over 30cc's from Tom, that was one heck of a syringe! He had numbed up his port before going in with Emla... Good idea, that much blood wasn't coming out of the back of his hand! It was good to meet all of his old nurses, they were all impressed with his hair (I MUST post a picture). Later on the day we met Dr Kurtzberg, actually it was quite a bit later, typical busy Tuesday so a lot of waiting. She was very happy with Toms progress, she was still of the opinion that Toms dropping counts and vomiting we're GvHD related, however we still had not received the results of the FISH test at that point (Test used to show the percentage of donor cells).

One of her main concerns now was getting him off as many drugs as possible, as quickly as possible due to the long term side effects in particular the Prednison steroid, AKA Drednisone. This drug can cause some severe joint damage, which if you've been keeping up you'll know had to be increased due to the mild GvHD of the gut, which was the snowball effect of stopping the FK506 due to the Diflucan which was prescribed for the yeast in his throat. *IF* he can't get off the prednisone quickly (weaning starts one week from now) then he will switch to another drug with less side effects, Imuran (not sure why they don't just use it anyway, but there must be a reason - I'll check).

Whilst in the clinic we also popped in to see Andrew, he's been having problems with glucose and had to go on Insulin, the meds were playing havoc with his pancreas, we're hoping to see him turn around REAL soon. Toms platelets dropped significantly to 66 from the 90's and Hemoglobin had dropped to 8.1, but you'd never have guessed it! However on returning to FL hospital his platelets had gone back to the 70's and HB up a little to 8.4, so he's stable and improving slightly again. Being stable like this means we MIGHT be able to go to hospital just...wait for it....once a week!.. Which is obviously real good for quality of life and the wallet as some of the tests were several hundred dollars a day and we were going several times a week.

It wasn't until Thursday night, just before we left that we got the results of the FISH tests, it was a real adrenaline time whilst on the phone, the implications of anything but 100% would have been extreme to say the least, as some of you already know, the results put big smiles on everybody's face... 100% donor cells...phew!!! No relapse.

After those great results it was celebration time, Dr K had told us that we could go in places IF they were real quiet and when they first open. There was a GREAT Mexican restaurant around the corner from where we lived up there called "On the Border", they had an outside bit, a kinda cabana type of thingy. It was a really nice night, nice and warm... things we're looking good, and we we're just chilling out, it was like being on vacation.

So, off we went on the long drive back, with our good news in hand, over 11 hours due to one too many stops along the way. The minivan was loaded up as usual with too many toys.. We had Toms laptop in the front in the middle connected to the portable GPS system, just incase we had to find a hospital fast due to the heart problem, which btw has not given any trouble (aside from once in the first few days) since the Hickman was removed and the port installed, but I always like to be prepared.. besides, I like to press the button and hear the computer say "You have 9 hours and 10 minutes remaining" URGH. Then we had the Sony, mini digital 8 TV/video units, with our box of movies, so Tom and Amy managed to take in a movie on the way down, on the next trip I'm planning on bringing a wireless hub and using a laptop as a server in conjunction with the cellphone so we'll have wireless Internet in the car!! COOL!!.. I can't help myself LOL

Since we got back Tom has set up his own little exercise protocol, he goes on the treadmill twice and the exercise twice a day, as well as some light weights to strengthen his arms. He says that he will be a big muscle man when he is ready for his next visit to Duke, he just might be right, oh and the other day our pool refinishing project was finally completed, so late last night we jumped in the pool, unfortunately it was only 83 degrees, the solar has a leak so we could not crank the heat up. Tom and I were first in followed by Nic, Amy was at the mall with a friend. Tom really wanted to be first in the pool, we've never actually been in the pool, we both stood there screaming like babies trying to get into the water, it felt SOooooooo cold... He could tell I was about to make the plunge, so he went for it and throw himself in to make sure he was first... I had to follow with a jump into the 8 foot, I nearly had a heart attack, but after a while got used to it, can't wait to get the solar fixed tomorrow!

He's been more independent recently, full of energy and feeling good. He's also been getting his plateful of medications together himself (naturally we 'sign it off' before he takes any, but to be honest he knows more about them then I do!).

June 26th 2002
There's so much to tell but I have not had time to sit down and update the site yet, however, as I LITERALLY just received some EXCELLENT news. I thought I should post it immediately.. Then when I return to Orlando tomorrow night, I'll try and do a more indepth update.

We have been anxiously awaiting the results of the FISH test to tell us if Tom was relapsing or suffering from a mild GvHD, well the results are in.... wait for it.... 100% donor cells!!!! Not a single cell of Toms anywhere to be seen... Although we have some GvHD issues to deal with, I'd say it's "game on" :)

June 21st 2002
Quick note to let you know that we had a further blood test today and things were looking better, Hemoglobin had stabilised at 8.4, which is of course better than a drop. Platelets had continued to go up slowly and are now at 90, neutrophil percentage is a little high at 84%, but we're not worried about that... better than not having any! If they were down I WOULD be considerably more concerned.

The white cell count has also risen to 2.7 So overall it looks like albeit slow, things are starting to move in the right direction again. Tom in himself is feeling much better as he is no longer suffering from nausea or vomiting (Since the steroid increase - Prednison up from 7mg a day to 40mg) and just feels a whole lot better. We're still waiting on the FISH results to make sure he is 100% donor cells still, but it sure does look like we're dealing with GvHD and not relapse. Although his creatinine (Kidney function) is now down at 1.3, with the target to be below 1.0, the BUN (Liver function) has increased from 33 to 40, that is too high, but I'm not sure just how high it has to go before it is of concern, I will certainly find out. His weight seems to have stabilized at 33.3kg, the way he is starting to pick back up I am optomistic that this will start to increase over the next week or so.

We were supposed to go to Duke on Saturday, but that has been changed as it turned out they did not book us in for Monday, but Tuesday, so we're going to go on the Sunday instead, a nice 10 hour Sunday drive. At least we've found what looks like a nice new and hopefully clean Marriot almost over the road from the hospital, I drove past it for months and never really noticed it. As we don't want to take Tom into any restaurants including any facilities at the hotel, it looks like the minivan or 'MPV' to our British supporters will once again become our mobile restaurant, we're used it, a small price to pay to keep him well.

Currently the only thing that is really bothering him appears to be this intermitant burning in the feet, we hope that this is just GvHD related, but after doing a little reading I'm not optomistic :(

June 19th 2002
Ok, here's the scoop. We went to clinic today for more blood tests and to have the blood drawn for the FISH tests, whoops.. the nurse didn't take enough blood..so Tom got stuck twice, the EMLA helps, so it was just uncomfortable with the strap around the arm, and bruised nicely. The results were actually better than we expected, the platelets had gone up ever so slightly to 86, HB up to 8.4 and WBC 2.0. Only small movements upwards (Oh and as usual the neutrophil was running around 75% which is great), but if you consider the fact that they were dropping rather quickly, that's very good news. Tom had started to suffer from nausea later today, and also started to vomit, by later on in the day he was vomiting on the hour. I exchanged email with Dr K at Duke and she suggested that we up the prednisone (steroid) from 7mg a day to 40mg, with 1 dose of 20mg immediately and 20mg tonight, unfortunately we only have 5mg 'in stock' so that's 8 tablets until we get bigger ones. Tom was also suffering from a rather bad headache, he just wasn't himself.

An hour or two later it was like magic, the headache had gone, the nausea had gone, and he was up and about on the hunt for food, he was a new man :) ... We've seen steroid increases work quickly like this in the past, we even saw him before surgery for the port get a big shot of steroids which made the GvHD of the skin almost go away within an hour!

What does all of this mean, well, it looks like all this problems with counts dropping are probably being caused by a GvHD, especially with the nausea/vomit situation and the way the steroid kicked it into touch, add in the great balance of neutrophils, and relapse is certainly looking like the place I would NOT place my money anymore, of course until we get results of the FISH test next week we won't know for sure, but I'm not as worried as I was the other day when everything seemed to be going downhill rather quickly.

We do however, have other problems to deal with...Peripheral neuropathy, now I'm not going to say I'm an expert on this...YET ;-) .. But basically, Tom has been having problems with a burning in his feet and hands, a little like when you come in from a real cold day and then your feet warm up too quick and they burn. These are symptoms of peripheral neuropathy, it could be GvHD but there is a fairly good chance it's not. This is something that can not be cured, it's something that will be with him forever, I believe there are medications that can help to alliviate the symptoms. What causes it is the chemo and/or the radiation, guess they burnt out a few fuses, we'll just have to see how he goes as time goes on.

Although it is disappointing that GvHD is still bothering him this far out, it is certainly better than the alternative, the relapse. There are for's and against of this potential GvHD flare up.

FOR:
- It means he has not relapsed! (not guaranteed until the FISH test results next week)
- It means he will also get a dose of graft vs leukemia again, whereby if Amy's cells see any remaining leukemic cells, it will blast them outta there, so less chance of a relapse.

AGAINST:
- Slower recovery as it will take longer to get him off the medications
- More medications
- Longer use of steroids, which in turn can give serious long term side effects like damage to the joints

So that's about where we're up to, still playing a little bit of a waiting game.

June 17th 2002 (160 days post transplant)

Looks like I spoke to soon. We've been having a few blood tests since the last update, after the counts went up, they stabilized for a day or two, and then turned against us again, with the white cell count dropping, the platelets dropping and the hemoglobin dropping. The WBC went to 1.9, but today was around 2.1. Platelets dropped from the 98 to 80's to 77 now, and hemoglobin is only 8.1. There is a chance that in the next few days to maybe a week+ at best he will need a red blood transfusion..WOW, not had one of those for months now, we'd thought that we had seen the end of blood products.

We've been exchanging email with Dr Kurtzberg and the clinic here, she can't rule out the potential of a relapse, but she is still reasonably confident that it's not (wish we were - Of course you always fear the worst). Dr K feels it could be either the cellcept (anti-rejection) or GvHD, or both. He's not showing any signs of a GvHD problem but that does not mean that a very mild one could not be lingering. The plan of action is to a) Lower the cellcept from 3 doses a day (1,500 mg) to 2 doses (1,000 mg), if that is the culprit it should help get things back on track, problem is that it could take up to 4 weeks to see the effects, by that time he'll be running on fumes :) .. Actually he might have had red blood, and possibly platelets, we're really hoping he will be able to avoid this, but he'll be REAL close.

And b) Dr K has also ordered a FISH test, this will take around 1 week to get the results, this will tell us the percentage of donor cells vs Toms own cells, we've always had 100%, and this is what we want to see, if we get the 100% we know we're dealing with a lesser evil. Because he has female blood it's a simple blood test compared to having to have a bone marrow asparate, they just test male vs female cells. If we don't get 100% and it is a smoldering relapse then it will be time to regroup, I don't know what will happen, haven't discussed it, the obvious would be another transplant, but I believe that other options may exist such as lowering the drugs to that GvHD kicks up (should not be a problem to make Toms GvHD come back!), so that Amy's cells become more 'active' and knock out any remaining leukemic cells..in theory.. naturally something like that would carry risks, GvHD can be very serious if it gets out of control as it often can, but we're hoping that we don't have to go there. I also know that if it did come to that Dr K would want us back at Duke, and that's where we would want to be also - Well for the medical care anyway, so it would be good bye Florida.

Moving on... Toms kidneys are continuing to get better, last creatinine count was down to 1.3, down from 1.4 which was down from.. you guessed it.. 1.5.. so that's one good thing. The plan was that once he was under 1.0 we could slow down the trips to the hospital to just once a week rather than every other day, but this cell problem has put a stop to that.

In himself, Toms doing very well, I find it hard to believe his HB is only 8.2, he's holding up exceptionally well, he does look a little pale, and his eyes look a little withdrawn and dark but he's also had one too many late nights recently building huge lego and jigsaw projects that are taking over the house. Next week we're going to go up to Duke for a few days for the 6 months check up, so at least Dr K will be able to see Tom, a nice 10 hour trip each way. That's about it, we won't know a whole lot for a few days, aside from the trends, I'll post more as I know. Oh on a final note, his neutrophils are still in good shape, which is a good indicator, at an average of around 70% of the WBC.

June 10th 2002 (154 days post transplant)
Looks like we struck lucky again, we were dealing with a potential one of two evils, relapse or GvHD, it appears that we are dealing with mild GvHD (probably gut). After the last post, his appetite became worse, with a little nausea followed by late evening vomiting. Dr K and Dr H were fairly confident that it was GvHD and it does seem that it was. The prednisone steroid was increased and results were fairly quick, over the last few days he has improving bit by bit. On Sunday we went to hospital...hey what else could we do with a Sunday morning? (Don't ask me about forgetting the prescription for the blood draw..ARGGHHHH) and the results were much more positive, everything had moved in the right direction:

Platelets: 98 (up from 80's - Manual Diff suggested there could be more)
HB: 8.9 (Up from 8.5)
Creatinine: 1.5 (down from 1.6 - down is good)
BUN: 34 (down from high 30's - down is good)
Neutrophil: 75% (good balance)
WBC: 2.9 (up from 2.5 - up is good)

He is certainly more stable, but we need to see the kidney (Creatinine) level get under 1.0 still. The good news is that we have a day off hospital tomorrow, so no need to return until Wednesday...YEAH!!..Where we're hoping for the positive trend to continue. Naturally we're disappointed that he is now on more steroid, but we're very happy that this is now pointing away from relapse.

Tom is doing very well in himself again, we took our first stroll into the 'real world' this evening.. once the sun had more or less disappeared we went to Point Orlando (where we bumped into Amy's friend Alison and her mum at Johnny Rockets), we didn't go inside with Tom and picked a quiet area for him whilst we picked up the food.. Veggie burgers... We've found that the yeast problem is not a problem if it's in cooked food, only in cold foods like the pizza sauce in lunchables. Then off home to eat away, Tom ate half of his, which was good, especially with the home made chocolate milk (No restaurant milkshakes with ice cream), hopefully his weight will start to come back as he hit a low of 33kg due to the sickness, but this seems to have at least stabilized.

It was a nice evening out, yeah, it rained for a short while, Florida style, but who cared, he got to walk past the shops, although when we passed one of his favorite shops he was hanging around the door and didn't seem to know what to do with himself, he wanted to go in and although there was literally nobody in there, we didn't bother, not worth the risk, who knows who was in there two minutes before, Tom himself is VERY good about staying away from trouble, nobody more than Tom wants to stay well, and it really does not bother him, he's real sensible, he knows his meds inside out, in fact, he seems to know everything inside out..smarty pants :)

Oh whilst waiting for the food, Nicola nipped into FAO SCHWARTZ (BIG Toy store) and picked up a 20 round, automatic Nerf gun, which he had a huge amount of fun with this evening.. in fact.. so did I LOL That thing fires 20 rounds before you have time to blink!

So there you have it, next blood test on Wednesday, where he will have his weekly physical check up by Dr H, who by the way has been extremely good with us and is working very close with Dr Kurtzberg, the clinic side is working very well thanks to both doctors, plus I also get involved with passing the information back and forwards and discussing Toms current situation so that decisions by Dr K can be related to Dr Hajjar. As long as we can stay out of the main Florida hospital, which sucks as it's dirty, can't cope with people like Tom and the staff are totally and utterly clueless in the worst possible way when it comes to transplant patients (and we won't even talk about their billing department) then we'll be ok.

Finally, after 6 long transplant months, it feels like a life is coming back to us, we have a long way to go, but things look like they just might be getting better.

Although life is getting better for us, we never forget those that we have met along the way that have not been as fortunate as us, it saddens us when we sit back for a minute and think just how many children we have known that have not made it through treatment. This evening our thoughts are with Holly and her family for the very unfortunate loss of her daughter Sydney who fought a long, difficult battle at Duke, as well as Jill and her family for the unfortunate loss of Zack (aged 10) (Who also had the same disease as Tom).

June 7th 2002
Sorry for such a long gap in updates, it's been SOoooooooo busy since we got back to Orlando. There are lots of small things to post about since we got back, but I'll just bring up the info on our main problem right now.

In order to stop the vomiting they lowered the Diflucan dose by 50%. Unfortunately it was just too much at 400mg, it stopped him expelling the FK-506 which meant his kidneys started to take a hammering, and the numbers went up..and up.. and up.. not good. So they stopped the FK as it was too high, and waited a few days for the level to drop. He went back on FK at 50% dose. The kidney problem went down, but it's still too high at 1.6 and seems to be sticking at 1.5-1.6 at the moment (He has never had a problem like this, not even whilst going through transplant), so we're at hospital every other day for blood tests. The worrying thing is that the platelets stopped at 138 and then since all this started went into a downward trend, 138, 120,110,100,94,84... and his HB is also way down in the 8's. Obviously this is of great concern to us, as this is an indicator of a relapse. However Dr K from Duke and Dr H from FL Hospital, although not sure are leaning towards it being GvHD, possibly caused by the sudden stop in the FK, we've also talked with Dr H about the potential of a drug interaction with the Diflucan. As the CT was totally clear, and his throat look good..and tested clear, I'd personally like to see them stop the Diflucan for the next few days and see what happens, as it's only being given as a prophylactic treatment rather than being given to treat anything active, although I've read a lot about people sticking on it for months "just incase", it seems to be the way it is once you test positive.

As I type this I am waiting for more information from tests, including one that could indicate any problems with liver GvHD. Tom is actually very well in himself, he does not look like his HB is down, he's full of energy, no problems at all there, no stomach problems that would normally be associated with a gut GvHD, so if he does have any GvHD problems, and at this stage, although not desirable, it's the most desirable scenario for him, then I would guess it is very mild.

Not 100% sure where we will go from here, Dr H will talk with Dr K today and formulate a game plan, I did have a little exchange of email with Dr K last night and an increase in steroids could be on the cards. About the only thing he does have is a lowered appetite, which is infact a sign of a mild gut GvHD.

May 27th 2002
It's nothing to celebrate, but it's a milestone for sure. Today is exactly one year to the day that Tom was diagnosed with this horrible disease. It is a good time to remember that without the skills and determination to give kids like Tom the chance to live (especially Dr Kurtzberg for all dedication of her hard work) then Tom and children like him would not be here today! Thanks Duke!

It's rather late as I do this update, so just a quick note. Tom is so-so.. Still vomiting since starting the Diflucan, but his counts are looking better with a WBC of 2.5 and 135 platelets, HB 10.6, we may have another test tomorrow, if not, Tuesday, let's hope for an upward trend.

May 23rd 2002
I am the bearer of good news, we just got the results of the CT Scan, negative, no problem. So for now we'll stay in Orlando. Dr Hajjar here in Orlando has been very helpful with Tom and luckily he is very open to allowing Dr Kurtzberg to make decisions still on Toms treatment, so we've all been communicating via email allowing Dr K. to tweak meds, order that CT etc. I believe that not all doctors would be as helpful in that area. His WBC is down still at 1.9 and platelets dropped a little along with hemoglobin, we'll wait until next Tuesday for another test. The clinic here is small but ok, however the Florida Hospital side where we went for the CT scan...well... I don't like it.. financial there drill you like you are a criminal and then the staff we're pretty much clueless when it comes to BMT patients, trying to put us in several busy rooms with people that had colds and who knows what else, over all I was not impressed. We also have issues with their billing, they give us 40% off the prices as we are self pay, however they cranked up the costs 10 zillion times, so that after discount, the prices of the CT here was over 5 times the price of Dukes before discount, can you say total rip off? So that was a quick few thousand dollars spent, I'm trying to work that out with them but if they won't get real on this I'm not sure what we will do.

Tom has had a few friends over Wes, Brandon, Chris and Alan, it sure is good for him to be home! Well that's about it for now, just plodding along. Oh Tom will go on Diflucan as of yesterday per Dr K's instructions.

May 21st 2002
Enjoy it while we can, we're back in Orlando, get here Saturday night after a very long drive. It's been REAL busy since we got back so I have not had time to update with the details, I'll have to do this in a few days. However I have some news that I needed to post now.

Tom had a little bit of a sore throat a few days ago, just before we left Duke, he had a throat swab, and I just found out that it tested positive for a yeast infection, growing something similar to a brewers yeast. It's been in something he had eaten and it looks like the only culprit might be some frozen veggie food. Dr K. is calling Florida hospital to arrange for a CT scan of his brain, sinuses, chest, liver and spleen to see if it has spread. If caught early and treated correctly with amphotericin then he should be ok, BUT it does have the potential to turn into a serious complication. Until we have the results of the scan we won't know, if it has not spread, then he will get diflucan. Unfortunately if it does show positive, Dr K. wants us back in Durham, so we're going to have to move quickly to try and stop the loss of our apartment up there which is ours until the end of the month. We're also not sure how quickly Florida Hospital will respond to his needs for the tests, so there is a potential that we may have to quickly pack up, and leave again, we'll find out tomorrow.

If we end up back at Duke and he tests negative, we could come back home, if he tests positive, we have to stay, which means we'll probably have to pack up as if we're staying, oh what fun.. Right now, the packing and moving is not at the forefront of my mind, we're just very concerned about what is going on in there... Keep your fingers crossed!! He hasn't had that swim yet! The pool is still heating up (Due to some cold'ish night weather here)

May 16th 2002
Are you ready? We had the blood tests today, and I JUST got the results, the platelets are going up again, now at 137, the white cell count is up from it's low, and stagnant 1.9 to 2.9, the creatinine (kidneys) level has continued to to go down, now at 1.1 (within acceptable parameters), and the hemoglobin has gone up to 11.0. Neutrophils are running at around 66%, protein levels good. After his increase of Predisone to 10mg on the 14th, the sickness stopped immediately, literally that night, however we had also switched him from packets of magnesium to tablets so we're not sure if he is a mild GvHD of the gut, my 'gut instinct' (excuse the pun) is that he does not, but it's difficult to tell now without switching meds around, and that's in the hands of Dr K. The steroid is still at a low level. The next morning (after the predisone increase) it was immediately apparent that he was not the same person the improvement was remarkable, full of energy, not feeling sick, and went straight into having breakfast. Although he's not eating large amounts, he's eating ok, and the smell of food is not making him sick.

He's actually very excited about returning to Orlando, two days ago he did not want to leave, he wanted to be with Dr K. but now he's confident in leaving. We're all feeling a lot better ourselves, the time has come :)

On a final note, unfortunately we were not aware they wanted to test his FK506 level and he took the med in the morning before clinic today, so we have to take him back tomorrow for another blood draw. We'll meet with Dr.K sometime tomorrow and then we'll leave on the Saturday.. or so the plan goes.

May 14th 2002
Sundays blood test were supposed to have told us how Tom was doing, well after all the blood tests, he was not worse.. not better.. just the same, so we had to wait until today (Tuesday). We went to clinic, had all the tests using his port to draw blood (and yes it still hurts him when it's used) and guess what, the counts are still the same. WBC had increased ever so slightly to 2.0 so that is here or there, platelets 120, Hemoglobin 10.3. Creatinine was down every so slightly at 1.2 which is the max amount before being out of wack. So decisions, decisions. Dr K. didn't really want to throw us a pointer, she said she was ok with us going, but wasn't really committing to whether it was really 'recommended' for us to leave. Leaving the decision to us, do we stay..do we go.. a very difficult decision to make. The doctor we will transfer to in Florida (I believe) is a good oncologist, but he's not a bone marrow transplant doctor and their BMT center is very new and overall will lack experience. Aside from these issues with Toms counts, he also has a little fungus at the back of his throat (We didn't know, he does not have a sore throat), but it's not a big deal and she is not concerned about that, but we've also got him vomitting in the early hours still (3am this morning).

Gut GvHD is suspect, but there is little concern, the prednisone steroid is to be increased from 5mg once a day to 5mg twice a day to see if it stops the sickness, and if does not stop the sickness then the cellcept will be the suspect and it will be reduced. It will be safer to reduce the cellcept as the prednison increase will take it's place. She does not want to just reduce the cellcept as it would be taking down all his defence against GvHD in one shot.

We we're rather stressed (and still are) and could not decide what to do, at the end of the meeting we decided to leave, on Saturday. We're still not 100% sure it's the right thing, but the fact is that there is a chance that for the next 6+ months we'll have to deal with similar small issues like this so the choice is we stay until the end of the year, or take our chances and go for it. If push comes to shove we can always return, but that would be a huge pain in the, you know where.

It was a bad night with Tom last night, we got to bed late, and he was up being sick in the early hours, then we had to be up at 7am, so I could run to the hospital early to pick up Emla numbing cream to put on the port.. talk about a long tiring day. Well that's about it.. let's see what the next few days bring.

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