CURRENT INFORMATION

February 8th 2002 (Day 31 From Transplant) WBC 17.0!
Wow, how did it get to the 8th! I'm such a slacker :) ..Ok, here's the current situation, and I think I'll get right to the good news..As you can see above the WBC is doing very nicely 17.0 and around 90% neutrophils, so that'll give a neutrophil of around 15,300 (UK: 15.3), and that's not the only good news! Last week they ran a test and we obtained the results today, because Tom received 'female' blood from Amy it is simple for them to test how much is Toms and how much is Amy's, a male to male would not be as straight forward, sometimes you might get 90% female (donor) and 10% Toms, and that might be ok, but we got the best result we could hope for, so far his blood is 0% male, 100% female, exactly what we wanted to hear, so far Toms marrow is totally and utterly flattened, a perfect engraftment...And they said it couldn't be done.. Well Duke didn't say that.. But some people did (Manchester Royal Childrens Hospital).

His platelet dependency is getting better, last week he was using a bag a day, now he is able to go for a good 3 days without them. They have lowered his level down from 20 to 10 which helps to stimulate his body to produce them, he was 9 today, but we've had no bleed problems, when we first got here they gave him vitamin K and that seemed to stop low platelet bleeds in his mouth more or less straight away. They have not taken down the TPN (feed) yet, but did cut it down by half, plus they cut down some of his other meds including the steroids, there is/was a chance that GVHD (possibly of the skin again) could show it's head but so far no problems, I believe in a few more days if all is well the drugs will go down again.

He did have a rash problem within the last 24 hours and it was put down to the carrier in the cyclosporin IV, so they have switched that to a liquid which apparently tastes real bad, first dose tonight, that'll be fun. The Heparin is down now, that came down the other day, so he is only on the IV's in the morning for 3 hours and over night with the TPN. Next week we hope he will be one day at hospital (for a day of meds) and one day out which will be a big, big help for all of us.

A few things that I forgot to mention in the last update:

Tom is set up for some fun, those of you that know him will know that he is a big car nut, I have no idea where he gets it from =;-) ...I dropped a note to the WRC to tell them about Tom and I received a reply, the Peugeot team have offered to take him out for a drive as a co-driver with the world champion Richard Burns!! WOW.. I'm jealous :) . Click Here to see a picture of the car, or Click Here to go to the WRC web site.

He has also been invited to Sea World in Orlando to swim with the dolphins at discovery cove. Unfortunately he can't go in water for some time and we have to make sure he has lots of platelets before getting into a car like that!

I think I also failed to mention that just before he got out of hospital due to his low platelets and the amount of straining from vomiting that he had a bleed in his right eye, it was a little shocking at first, but didn't effect his sight and I'd say it's around 50% healed up already. The eating situation is still improving and I would hope the TPN will be down any day now.

Tom also had a problem with a bleed on his head last week, he has had a little blood spot on his head for some time, from way back when we were in the UK, well.. guess what, he decided to pick it.. bad call!.. It was a tiny little hole, real small, a pin prick, but it would not stop bleeding for anything, just a little trickle, but constant. We dressed it a couple of times before bed time, then you should have seen his bed the next day, his pillow was covered in blood, and he looked like he had been hit by a hammer. This went on for 3 days, the doctors could not believe that so much blood could come from such a small hole, they ended up sealing it with Zinc Nitrate, it didn't hurt, but he was left with a big black patch on his head, he's currently peeling it off... he's looking for trouble :) . Actually it's all sealed and fixed up.

February 4th 2002 (Day 27 From Transplant) WBC 10.6!
Not much going on at the moment. Toms count went up to 10.6 with 94% neutrophil, so thats an ANC of 9,964 or 9.96 in UK money :) Since the last update on Saturday the 2nd, he has not had any more platelets! He went to the low 20's and seemed to stay there which is good news, it's dropped a little today, what tomorrow will bring, we have no idea.

He is eating well, 3 small meals a day and snacks, with lots to drink, so we're hoping they will take the TPN down tomorrow and possibly the Heprin which is up all the time, so he'll be off his line most of the day and night..which means a good nights sleep for all of us, and we're over another hurdle, VOD risk slim to none. The good news is that Toms full character has returned, it's like he's not ill again, he is full of spirit and has got used to the fact that Amy's blood is running the show now, he actually said today how lucky he was that Amy actually matched.. How right he is.

His temp is fine, and his blood pressure is back to normal, everything looks good as usual we're all very pleased. Btw: Our long days at the hospital are Tuesday, Thursday and Saturdays when he has to get large amounts of drugs. It was my first day at clinic yesterday whilst Nic took care of the house, picked up all the plates I left everywhere etc.. (only kidding about the plates) and that was the first day he didn't need anything, we were in and out in an hour..ha..ha, unlike Nic's 9 hour day the day before.. Hey.. I've done my day :)

Last night we knocked off on a switch on a pump and didn't realize until later, so we went to bed at 12:30am, then I got up to the loud buzzing of the pump at 1:30am to switch it off and take the line down. Then we had to do a few toilet runs in the middle of the night..can't wait to get rid of the 1.25L of TPN!!!! That's all for now.

February 2nd 2002 (Day 25 From Transplant) WBC 8.2!
Finally, I got to update the site, and I was doing so well! It's been a very, very busy time with both Tom and work which faced me with many time sensitive jobs, I have literally not had a second to spare. Tom is out of the hospital and gets better each and every day. He left on Tuesday, it was a little hit and miss as we had trouble getting him to take his tablets, we managed to switch to liquid, he was being real difficult about it as he has a lot of nausea. By Tuesday the WBC count was up to 2.0 when we left, after going down to 0.7 it stabilized and started to go up, at first it started to jump and then slowed, now it's going up much quicker, in the last few days it went 3.0, 3.8, 6.0 to 8.2 today, and the cells are looking nice and healthy with a neutrophil count of 92%, which gives an ANC of 7,544 or 7.54 for those in the UK. Before the transplant he was typically around 7% neutrophils due to the leukemia.

For those of you that think oh great we're out of the hospital and just sat around watching TV oh how wrong you would be. Tom is on a lot of drugs from anti-viral to anti-rejection, and big bags of TPN & Lipids (breakfast, lunch and dinner in a bag). All of these drugs have to be administered and that comes down to us. It's difficult to put over just how much time this actually takes, some of it is injected directly into his hickman line, and some have to go in slow over 10 minutes, some go on pumps, we have to operate 5 IV pumps! We get up in the morning disconnect the TPN, then flush his lines and draw blood which I run over to the labs at the hospital, Nicola then steps in while I am out and administers a mass of drugs, steroids, anti-viral, GCSF (cell stimulant), anti-fungal,anti-rejection. It takes around one hour to prep it all and then another hour to put in, then we have to rush off to the hospital, Tom has a little bag (actually rather big heavy bag) which he hauls with him

It's all day at the hospital, Nicola stays there now while I try to work, but I'll start to do a few days soon, she got out of the hospital today at 6:30pm after getting there at 10am as he had to have platelets which he has a bag of every day, they have to give him several other meds over a few hours, by the time we get home, it's time to start it all over again and then get into bed ready for the morning, we have to be up no later than 7am to stay on track and it's rare we would get to bed before 1am, it's a total around the clock situation. As he receives 12 hours of TPN (feed) over night you can guess what happens to around 1.25L of liquid, of course he can't make it to the bathroom on his own with all the tubes and pumps so Nic and I have to assist him at all hours, 2am.. 4am etc.. Now you can see why it's been a little difficult to update the site, it's been crazy, what with the crash course in nursing! Part of the work has to be done with sterile gloves etc such as daily changes of the caps on his line, and it's really stressful making sure you don't do it wrong and touch something you shouldn't.

One of the risks to Tom was CMV a virus that can reactivate in the blood, he tested negative for it before he was transplanted but unfortunately Amy was positive (common with donors, over 50% of the population has it). It can prove to be fatal if not treated, commonly causing pneumonia which he would be unable to fight off. The tests showed CMV *DNA*, the disease is not actually active and therefore they have been able to give him gancylovir (a real strong drug) to kick it's butt before it has chance to raise its ugly head. Before this drug was available 80% of people would not have been able to fight it off! Gancylocir is a chemotherapy based drug and yes we administer this also, twice a day, that's how we managed to get up from a 4 pump deal to 5 pumps, we have an emergency spill kit, and have to be extremely careful when handling it, big rubber gloves etc, it will lower his counts a little but we have no choice, I believe he will be taking it for around 3 weeks, this will also increase the need for platelets and GCSF (2 shots a day) over a longer period of time... GREAT.. Two of the most expensive drugs.. I think the GSCF is around $200 a shot, and platelets $500 a bag.. Add that up if you dare...Actually it's Nicola that has to be careful with it as she is handling 99% of the drugs now so I can get on with work, plus when the main training took place I have to admit I was not firing on all cylinders, my eyes were going and I was REAL tired, it was the day Tom had been released and I was SOoooooooooo tired, the build up to his release Tom had quite a bit of nausea and sickness so Nic and I had very little sleep, some nights less than 3 hours, with no sleep during the day.

His blood pressure is running a little high around 145/110 for a short time today so they gave him laseks (probably spelt totally wrong) which helps *rapidly* expel liquids, it's down now but the last week it has been getting up there a little. The graft vs host disease (GHVD) of the skin has more or less gone, a little on his back, feet and hands, it seems to have come back ever so slightly since they lowered his steroids, he should have cream applied 3 times a day but we can't do it more than twice, unless we can figure out how to freeze time.. Ok.. Actually Nicola can't find time, as she takes care of the cream also. Off the subject for those that have asked, it will take a good 9 months before he has a half decent immune system, he has to wear a mask when outside for 6 months.

His appetite is getting better all the time, his not back on the pizza yet but he eating little meals each day, we're hoping that the TPN will stop Tuesday if the blood looks good (proteins etc), this will make life a lot easier, connecting up TPN takes a while, it requires the injection of vitamins, lots of cable hook ups and filters, and then stops him getting a good sleep, plus makes him feel sick anyway, once it comes down we're sure he will start to eat more as the sickness should go and he'll feel hungry. The Heparin line which is connected to him 24/7 should also come down if we are lucky, which means without Heparin and TPN he'll be off his line for most of the day! We could reduce more IV's if he would take the tablets! Which he will after take sooner or later anyway (it will be sooner), aside from all the time and inconvenience involved with IV, the IV meds are seriously expensive compared to tablets, this boy is spending the money faster than ANY mall trip! :), btw The Heparin is to help stop the potential fatal complication (made worse by his previous Mylotarg) of VOD (Veno Occlusive Disease) - Liver problems, we need to get past day 31 to be out of the woods, we're at day 24 and problem free.

I do a lot of driving, instead of Nicola going to clinic with Tom and have to park up and walk for miles from the car park, go through busy corridors and elevators I drop them off and pick them up, with the blood run it takes a little time but nowhere near the amount of time it takes for her to sit in clinic with him! This allowed me to catch up with work (and update this site) plus finish off all my end of year stuff, so I should be in a position to get back to more frequent updates.

Overall things are looking very good indeed, we still have a long haul ahead of us with plenty of potential side effects, but compared to what we were faced with in the UK (and I think you ALL know what that was), this is one HUGE turnaround, the light at the end of the tunnel is getting closer now... And yes Monte you're right, we are almost in Florida :) .. Actually we have a good 100 days to go from transplant before we go anywhere. Perhaps I'll have time to edit, document and upload some photo's soon.

January 26th 2002 (Day 18 From Transplant)
Ok, here's the skinny... Tom WBC fell a little still 0.7, but we're not worried, well actually it bothers Nicola is a little but Joanne Kurtzberg our doctor assures us we're fine, the GCSF schedule change can make a difference to the counts and the GVHD treatment. I just wish it would stay above 1.0 so we can go home!!

Is this the same Tom today? Doing VERY well all of a sudden a big turnaround, a bit like somebody recovering from a bad dose of flu, not himself, but not the Tom of the past week, he's walking pain free, in fact has little to no pain, he walks up the hall.. Talking about eating.. Decided he wanted to just smell a box of fruit loops :) . .The smell of food any other day would be a big no. He feels a lot better in himself and the depression problems seem to have subsided considerably.

He watched a funny movie yesterday (MVP - With the monkey etc) and he didn't laugh or smile all the way through it, now he LOVES movies with animals I thought it would have got us a smile or two, but nothing, emotionless, not like Tom at all. Today we put part two on.. laughing , smiling.. this was our Tom back with us at last, the difference could not be measured by conventional means.

We had our first visitors today, Grandma Dot, Nadia and Cliff (My mother, sister and her fiancée). They hung out for a while from 5pm to around 9pm, Tom played Nintendo with Cliff for a while but felt sick later from the motion, overall, a big turnaround, we are very pleased, watching Tom be so sick for so long and feel so depressed was getting us all down, he had got to the point that he felt like he no longer wanted to continue the fight, all of you that know Tom will know that this is totally out of character...The fight continues.

January 25th 2002 (Day 17 From Transplant)
Sorry for the lack of update, I had to check the calendar to see what day it was, it's been a tiresome few days. Let me try and summarize.

It has been rough, Toms temp has been up and down, more up in the evening, by as much as 39.9, this of course has made him feel real bad. He was trying to vomit a lot, getting little to no sleep in the evening, bad headaches, just real bad. Due to his platelet count and straining whilst being sick he had a bleed in his eye, so it's rather red in one side now, but it's not a problem and will heal with time

We were hoping to take him home Friday (today), no chance due to the temp and his current general unwell feeling.

He has taken an abundance of anti-sickness medications, none of them being effective enough, and some causing side effects such as seeing double in the worst case, or large amounts of energy in his legs. As the cells engraft he has had a huge, unbearable amount of pain, especially in the legs, to the point the other day that he was unable to walk. So, when are we going home? Hopefully Tuesday if all goes well, the temp has been down for around 36 hours so that's good.

They did give him a CT scan yesterday to make sure that he did not have any fungal sinus infections, that came up clear..phew. They were pretty sure it would be, but wanted to do it just incase. Today the vomiting has stopped and he is stable, but feeling very sick all the time, I am hoping to see a little bit of a turnaround tomorrow. His count had reached WBC 1.9, then they had to make some changes to his medication. He was receiving GCSF in one dose, this is the medication that artificially forced his cells to grow, but could've also been the cause of his severe bone pains. It was switched to two doses every 12 hours instead of the one, this effects the cell count as GSCF give 'spikes' in the cell counts at certain times, so the count dropped to 1.1, and then today 0.8 but in theory the cells are still there, it's no big deal, things are still going ok and we hope they will now start to come back up

When he does get to walk which is not very often, he gets tired easily, walk few steps and he is tired and feels sick. Once we get out of here the fun really starts, we have to draw the blood, re-do the dressings on his old hickman line site, flush his lines, replace the caps on his hickman line caps, connect the feeder (TPN) and it all has to be totally and utterly sterile, we've been training in the hospital, we've had a lot of laughs..we're getting there, but it's hard work, Tom will also be taking a lot of tablets when we get home, and he hates those, we'll spend each day in clinic, we're almost through stage 1, a few more to go.

The skin GVHD continues to go down, and is not causing any problems, he is doing well in that department, still using the 3 creams, 3 times a day. Lets hope tomorrow is the turning point, Nic and I are getting very, very tired now, this is a lot of hard work, the lack of sleep and poor hospital food don't help. Oh.. Hopefully we will go home Tuesday, but it depends, we need a WBC count of 1.0 with good neutrophils for 3 straight days.. Tomorrow we will see if we have day one.



January 21st 2002 (Day 13 From Transplant) THINGS PICK UP
Finally things are moving to the next level. I probably haven't stressed enough just how sick Tom has been during the engraftment, as many people who contact us tend to think that things are real good for him. To clarify, things have and are moving in the right direction, it's been a text book case and everything is going well, but Tom has suffered for the last 5 days or so, he has had a lot of nausea, day and night, slept very little, trying to be sick, especially at night time. The GVHD is all over the skin but not bothering him too much at all, infact we were told his legs were actually something to do with the blood vessels to the hair folicals bursting. All of his previous 'injuries' from the surgery in the hickman line replacement are red, it's the new cells mopping up and repairing things properly.

Although he has been sick, and his temp has been in the 39's each night, and mid 38's during the day, which gives him headaches, yesterday it started to come down, but then went up again, he has a little trouble walking due to sore legs again, and his arms are sore.. oh.. and his head.. all part of the engraftment and temp caused by engraftment. Anyway, he's picking up, today the WBC was up from 1.0 to 1.2, neutrophils look good at around 60% or so, ANC 636 (neutro 0.63), looking good. Temp came down today and stayed down although sneaking up a little this evening, but still only around 37.4-37.6 at it's highest point. He is drinking a lot more, up to 1.5-2 litres a day, and I'd be prepared to place a bet that he will start eating tomorrow or the day after, you can see a HUGE difference in him now, even with a hemoglobin of only 8.2.

He managed to sneak off his heavy drip stand for 15 minutes, he jumped on the go-cart and raced with me up and down the corridor. His lungs sound great, all his organs are testing out in perfect condition, they tell him that he is doing exceptionally well and are very pleased with him still, we may be able to take him home on Friday, if not, we will get out Monday as long as things stay as they are. We had some fun today, I really wish I video taped it, I volunteered for training by our nurse Shannon (who is great) to redress his old hickman line.. wow what a job, it's like performing an operation, I messed up putting my gloves on, it's not easy at first touch the wrong thing and it's contaminated..start again, Nicola thought it was real funny, so did Shannon, then it was her time to learn how to change the caps, 3 caps later we managed she managed to do it without dropping them, again you had to be there, it was funny.. I think Tom almost fell asleep waiting for us. We're getting there, there is going to be a lot of work to do when we get out, taking blood, flushing his line each day, hooking up TPN until he starts eating, GCSF bolus injections and more.. a real full time deal for at good couple of weeks, at least we'll be out of the hospital, we'll be fully trained nurses when we're finished!

We all place bets on the WBC for the next day, if anybody would like to become involved feel free to sign his guestbook with your guess for the next day or so :)

He is off the prophylactic vancomycin stopped the other day as all of his blood cultures came back as negative and they were very sure the temps were just engraftment. He has suffered quite a bit because the cells engrafted so quickly, which was a good thing of course, aside from the horrible sickness. I am hoping tomorrow will be the big day when we see a full day of perfect temps, and a happy Tom.

A little bit more good news, being British we are entitled to free medication for children, our local GP agreed that we could have a perscription for Toms outpatient medication, this will save us well over $2,000 a month for a good 6 months (again if all goes to plan)..COOL!.. Btw: I want to add in that our doctor at our previous UK hospital had failed to help us with a previous request, this was our local doctor that helped us out with this.

Sorry for the slow update recently, I have also been very busy with work. I was pleased to get a good 3+ hours sleep yesterday!

To answer a question a few of you have asked us, this is stage 1, a big stage, but a stage, there are a lot of issues to deal with including potential relapse should Toms cells start to return, we will be in Durham for 100 days from transplant (minimum), once we get past that, we're in good shape, but it takes over 2 years to be sure you've pulled it off , of course it can return at any time, but 2 years is the magic barrier. He was also at risk of VOD (Increased by our use of Mylotarg), but that potential problem is almost past, day 21-28 is the biggest risk, but his liver is working just fine with no elevations, I am not worried about this...Is this kid human? I often wonder :)

I did forget to mention the GVHD is much, much better, half what it was, he looks pretty good, like he's just getting over measles, we have (Nic does it) to cover the rash in 3 different creams, 3 times a day, and it does not rub in easy, bit of a pain to say the least.

On a final note, Tom needs as much support as possible now from his friends, feel free to mail him a get well card, the home address (308 Ivy Meadow Lane) is in the contact area from the home page, feeling so ill has taken his toll on him recently and his has become extremely upset about this on several occassions in the last day or two, he wants to be with his friends, swimming in the pool and is upset that this happened to him, he wants to feel well and is very depressed with feeling ill, the 8 months are catching up. Please support him as much as possible, he loves to receive mail, opening things is always a little special to him, he likes to read the guestbook also, but you can't beat a letter/card. This is the time when he needs support, lots of it.

January 19th 2002 (Day 11 From Transplant) GOOD NEWS CONTINUE
SQuick Update. The good news from yesterday is continuing, the white cell count continues to grow, up from 0.4 yesterday, almost doubling again to 0.7. We might be out of the hospital in a week or less. He is feeling the pain though, high temp still although all blood cultures are negative, it's the engraftment that is causing the problem. He has a rash on his face and legs, all part of the game also. We were up all night again, I probably got 1 hour sleep... I'm starting to get rather tired.

They will start doing neutrophil counts etc as of today, and if this continues for 3 days, and Tom is well, home time!!!


January 18th 2002 (Day 10 From Transplant) GOOD NEWS!
The last few days have been tough, but no pain, no gain has been the theme for sure. Over the last day or so he has felt the pain, lots and lots of severe pains in his legs and back, to the point of keeping him up all night, he would march on the spot just to try and get rid of it. He also has more than his fair share of nausea, the mucusitas which is basically a lot of sores inside his gut causes him to be sick due to a build up of muscus inside his digestive system, or at least try, as he has not eaten for a week+, of course he receives his nutrition through his IV line, so he has not lost weight.

What this has also meant for Nic and I is, zero sleep, the night before last, Nic slept and got little over 1 hour sleep, I beat her with around 15 mins last night, unfortunately Nic has been a little ill and therefore not at the hospital today, I'm just hoping he sleeps tonight!

He is off his pain medication, he has the button but never presses it, he's tougher than me! his mouth is in excellent shape, little to no sores now, this is not common, we're all thankful for that! He has been through all the narcotic medications for sickness/pain and they have not been totally successful so today the doctor had a guy come around that helps the kids manage pain, he has been very successful for many years here, turns out he does hypnotherapy etc, so we sent Tom off to the beach with some of his friends :) .. He actually went to sleep at the end and did not wake up, he was very relaxed which was good, what was real funny was when he woke up a few minutes later and asked me why the guy never told him to open his eyes, he was waiting... He had asked him..twice.. with no response.

Ok, I've held it back long enough, here is the VERY GOOD NEWS Why all these aches and pains... What is going on? Engraftment!! Amys marrow is taking over and moving in. The other day his white cells were at 0.0.. The big Zero..Then <0.1, which is kind of a little more than 0.0.. next day 0.1 and then 0.2... And we were all quietly optomistic.. and then... 5am'ish this morning (They draw labs/blood to test each day at 4am so they have results before 9am ready to start appropriate treatment).. In came the results we all wanted to hear 0.4!!! And we're only on day 9.

It is way to early for the potential of Toms cells to return, these ARE Amys cells, filling up the marrow, and giving him pain. Of course there are a lot of hurdles to cross still, the risk of Amys cells attacking Tom (Graft Vs Host Disease - GVHD) and liver problems (Veno Occlusive Disease), so far all of his essential tests are coming back as normal, he is holding out remarkably well

Once the cells reach a WBC of 0.50 for 3 days in a row, if you are well, you can pack up your stuff, and get outta here!! We have to stay in NC for at least 100 days after transplant, and we will be going to clinic each and every day for most of the day for tests for quite some time, but out of hospital is out of hospital, we are hoping that within a week there is a chance we can take him out of the hospital and go outpatient.

Right now he has a temp', he's been up to 39.6, which is high for him, and is tending to stick at around 38.6, he takes antibiotics, lots of them, it's the engraftment that is causing it, we hope in the next day or two things will start to get easier. He is drinking now, which is good, around 500ml of water, so things are moving in the right direction, although food is a now, he has a rather upset stomach due to the chemo, the engraftment, the meds, blah..blah. HIs main problem though is just feeling sick all the time.

All in all, a good day, just a shame that Tom has to feel so bad with such good news in front of him. I'd say this is a battle they we have just won in a big way, about time we won one! Mr Leukemia just started to get the whooping he deserves from Tom Da Bomb, and of course Amy... We couldn't do it without her...Amy and Tom together, oh boy Leukemia is in BIG trouble now. Time to polish it off win another battle or two and the war is over...Tom wins.

Oh with all the excitement I forgot to write about the other day. Tom was feeling really crappy (no other word fits the description) and not looking so good after a long night and was not getting out of bed, until suddenly his eyes lit up and we got an instant big smile, an immediate turn around, the nurse was coming into the room with a HUGE bright box, it was from Dippin' Dots. We had contacted them to see if we could obtain them locally, as the places listed on the net were stands in stadiums etc that we had no chance of locating, and he was desperate for some! As he had not eaten or drank we really wanted to get them for him. The Dippin Dot's manufacturers took our address and mailed some out to us overnight!!! Supporting one of their biggest fans on a downer :)

For those of you not familiar with these, they are a frozen ice cream or frozen ice, in little balls that are very, very cold, I believe they stored at -107F, the box contained a Styrofoam box packed with dry ice, we're talking seriously cold. Tom had not eaten for well over a week, nothing, zip, no food, no drinks, he wasted no time in devouring a cup of Rainbow Ice, the fact that he was a little ill later as he was not used to any foods was no big deal for him, he really enjoyed them

It was a great pick up for him and nice to see him eat something. The box contained a scoop, some cool spoons that changed color with the temp', and a LOT of dots, far more than we could eat, so we decided it would be a good idea to share them out with all the other kids, and at the same time get Tom up and out of bed and moving, as he lungs were showing signs of fluids. So we grabbed a little table on wheels, stuck a mask on him and took to the hallway with one of the playleaders (I forget what they call them here) and served Dippin' Dots to all the kids, they loved 'em.. including the parents :) .. It went down very well and was a real nice break, great fun. The president of the company even took the time to write him a little good luck card which was real nice. I do have some photo's and some video but it takes time to prepare, I will upload this in the next day or two.

January 15th 2002 (Day 7 From Transplant)
It's been a little bit of a rollercoaster ride. Tom has been doing ok, he mouth became a little more sore and he started to have very, very small nose bleeds, these were real small, like if you had a sore inside your nose and it just bled a little bit. He has been sick a little bit once a day, nothing much, only lasts a few seconds, but tended to aggrevate his nose a little, the small vessels in his nose had started to act up, so they raised his minimum platelet requirement from 20 to 30, which means at the moment he is getting platelets up to twice a day, morning and night.

In the USA they use benadryl to stop reactions with platelets, and this sends him to sleep, on top of that, he is on antibiotics for his old hickman line site, although they don't feel there are any problems, they are giving them to him as a precaution as it is a little red around the site, we're not too worried about it, more bendaryl to stop reactions, and also bendaryl with the anti sickness. We're talking a lot of sleeping over the last couple of days, and ..well... more than OUR fair share of bad moods and lack of cooperation.

Due to the sleep and his lack of cooperation he has not been exercising as much as he should and would not work with us on it, the doctors noticed his lungs were not firing on all cylinders, the bottom area had fluid on them...not good.. we were worried about this moving on to pneunomia. The other day I bought him his own exercise bike, so that he had one with a digital distance counter etc, the hospital one did not have one, he can then set targets, watch his speed, it even has a heart monitor built into the handles.

We got to a difficult stage with him, so I asked the doctors do move in with the physical excerise and do whatever they have to do to get him up and about, they came in next day (Today) and made him do lots of stretching, marching on the spot and plenty of bike time. He's actually a lot better today, good mood, spent a good 30+ minutes on the bike, did over 3 kilometers. The doctors came to check him out today and his lungs are apparently in good shape now, they can't hear any problems, looks like we nipped it in the bud.

They stopped the bendaryl with the antibiotics and he tolerated it ok this time (last time he had a big red face and body which can happen). They had also put him on a continuous pain killer infusion, as he was on the minimum amount anyway and is feeling good, they have stopped it now, and only run it at night, he will be able to press a button which gives him painkiller if he wants it.

His mouth his looking good, just a few sores, painful, but compared to anybody else he's in better shape than anybody on the ward for sure. The doctors told us everything is still going to plan and Tom is doing very, very well indeed, they are quite amazed at how well he is going through this, the doctor was joking saying they will have to put him on the Duke website.

The hair went yesterday (I am uploading video as I type this), it was hurting him and he asked for it to be shaved off, it looks like he has just had a number 1 shave, but the small hairs are falling out, he will be totally bald fairly soon. He has been holding some fluids, his weight increased and his face was swollen a little, so he is having some medication to remove the excess fluid.

So overall, he is doing better than others, they are impressed... And to top it off, we had some good news, but I want to start by playing this down right now, it's only 1 week since transplant and yesterday they did see some cells under the microscope... Good cells... There were only a couple or so, hardly any, and it is certainly way too early to make anything off it, but hey.. It's better than hearing they have seen leukemic cells.. another week or so and we hope to see a little action.

January 12th 2002
It's bright and early, Tom just woke up. Not much to write about over the last few days. Tom has started to be more cooperative about his excerise and has been using the excerise bike quite a bit. He has a lot of color in his face, in fact in his whole body, because Amy also had the same blood type (which is not always the case with a marrow match), they were able to leave all the blood intact without any filtering, so he got a good dose of red blood cells, he actually looks better than poor Amy who is still rather pale. She is doing a lot better now, although still a little sore, she did actually say that if she had to do it again, that she would do it, wow...Tom is definately going to have clean Amys room FOREVER :)

Every day the doctor comes to see him to check out how he is doing, discuss his medications, see if he has any questions, examine him etc. I thought his comment yesterday was quite funny, those of you that have physically been with Tom throughout this will know that he's always looked real good, and we often get the comment 'You'd never guess he'd gone 4 rounds of chemo' .. Well... What do we get yesterday ..The doctor laughed.. 'You'd never guess that Tom had just had a transplant' =:-) ...He does look good, his mouth and throat, although sore, which is what they expect, is not in too bad a shape compared to all the others, they tell us everything is going to plan and they are very, very happy with Toms current condition and the how he is doing.

He has his own pain killer machine now, he presses a button to administer his own medication, they have 3 main narcotics, Morphine and two others, he has tried them all as they have side effects, such as making his throat feel a little tight, or nausea. Right now he is on the morphine, but it looks like it may be making him feel sick. He can press the button as much as he wants, it will not let him keep receiving it, it will max out, they then read it and find out how many times he is actually pressing the button and can adjust the dose accordingly.

Being in an room can be a pain, last night I slept over (Nic and I alternate) and the drip stand was buzzing away for what seemed like hours, so I had to keep getting out of bed to press for assistance, plus Tom is still getting up for the bathroom every few hours, when you sleep here, you don't really sleep, so the next day at home is more of a recovery.

It's getting warmer here now, just under 60 degrees during the day, which is still cool but nice and most of the snow has gone. So, we will continue to wait, the docs are very happy with the results so far, Dr. Martin another doctor that looks after Tom suggested that we might get a fairly early engraftment of Amys cells, perhaps in a couple of weeks (Around Jan 22nd) we might start to see some action, I hope so, matched siblings engraft much quicker than others such as cord bloods, to get out of the hospital in 3 weeks or so would be GREAT!

Of course once we get of the hospital our journey is only just beginning, we will be making daily trips to hospital (all day jobs I believe) for some time, 100+ days of leukemia free cells is our first target, with many more hurdles and side effects to deal with.

January 8th 2002
WOW - It was supposed to be uneventful, not Tom though!. I will update more later, this is the quick version. Amy did well, very brave, gave us almost 900ml (took 30 minutes) they only wanted 600ml so we got plenty of marrow. The marrow/blood started to go in, and Tom almost immediately started to feel a pain in his neck area. The transfusion went on for 20 minutes and then trouble started, his blood pressure started to drop...and drop..and drop some more, it was real low! He started to get increased pain and in came a couple of nurses and a doctor.

I had noticed earlier that he was trying to be sick, but it was more like a weezing than a vomit, it just didn't look right. The infusion was stopped. They noticed he was weezing inside, They had to inject a drug into him to kick start him as he was fading extremely fast, it kick started him alright, the weezing must have been blood filling up his lungs as that came up via the mouth, he started to vomit blood, not huge amounts, but enough to set *my* heart going!. As soon as that drug kicked in, he got massive heart pain, blood pressure went to a crazy level something list 188/160 and the heart rate FLEW up, around 270+bpm, and was totally and utterly irratic, it was all over the place. Suddenly the room was full of people, crash team came racing to the room, over 20 people in total. He was going down big style. Just like something you see on the TV, the doctor was calling the shots on the med's, 'x'mg of whatever.. some steriods and more benydrl and before you know it, it was over, his signs came back to normal, and he was feeling ok, although having a little trouble getting full breaths.

We came close to losing him, I can only hazzard a guess but looking at how quickly he was progressing I would say minutes if not seconds, but we're talking about Tom The Bomb here, he bounced back. The infusion is going in again, but much, much slower, and they are starting to speed him up, the level of drugs he has in him now will stop the reaction. A lot of people got shaken up, it was quite an experience.. Trust Tom....PHEW... He is asleep now, and things are moving forward again. This is one of the reasons we came to Duke, when the you know what hits the fan, you need to be in the right place. Amy is also alsleep.. pale...in a little pain, but she's ok.

Whilst all this was happening, Nicola had just returned with Amy, they sent her to a side room, and one of the nurses went in to explain, whilst.. at the same time, the crash team and the chaplin turned up!...More when I get time.. I need a drink..give me a coke.. WITH ICE! :)

January 7th 2002
Only one day to go to transplant! We are all very excited (Amy is nervous). Since last posting Tom has become a little lazy, we're having a hard time getting him to do any excerise, though playing video games does not seem to be a problem for him. He has had more than his fair share of sick days (vomitting). He completed the Melphalan yesterday. Today is much better he is feeling a little sick, but out of a scale of 10 I'd say a 1.

Everything is going to plan, as you know aside from a heavily packed marrow, his blood was also showing a high level of blast (leukemic) cells that we've never been able to shift, before irradiation and chemo here it showed as much as 86% in the blood. Anyway, today we find that he count showed zero white cells and also zero blasts. We asked if that was a remission but it's not technically a remission, his marrow has been so heavily pounded that it is to be expected..Our nurse practioner said he is disease free, but I'm not sure how significant that really is, they know all of his marrow has now been totally and utterly destroyed, the TBI/Chemo did it's thing. What I do know is that some doctors from other hospitals had told me it is possible that this treatment would not even put him into remission and he would have to go to transplant with disease present, looks like that is not an issue for us. I am awaiting his doctors comments (via email) on this, either way, we'll look on the postive side

I have bought a little toy so we can convert video to the web, but it is junk, I will try and get a different one today. I had considered putting it up 'live' but it would take too long to set up the bandwidth and software. Sorry

Tom's in pretty good shape, holding steady, although a little tired. They put so many fluids in him that he is up a lot at night so it's not surprising (we are all tired out).

Amy and Tom will both start school on Wednesday, 45 minutes of private tuition, the teacher seems like a nice guy, very flexible, and will work with the kids to make sure they don't fall behind.

January 3rd 2002
So, what's going on here then? Not a whole lot. New Years Day, totally uneventful could have just been any other day, infact we decided midnight UK time was our New Year even though we are in the USA, we were all tired so I went home around 10:30pm. It seemed pointless just sat around when we had to be up and about early next morning for treatment.

Tom has to get out of his room, with a mask on, 3 times a day to excercise, he loves stuff like that and has taken to a go-cart here, they tell us it helps to keep the lungs clear and will help in in the near future. He zips up and down the corridors quite a bit, try that with a drip stand! We try to do it when he is off the line, which is not often, only when he gets back from radiation for around 15-20 minutes. We also did a little 10 pin bowling in the corridor :).. Hey, it's all fun here..Yeah right.

He has been tolerating radiation much better, not sick at all today, first time! He is feeling fine, although he is not eating much (more later on that one). Last day of radiation tomorrow...yeah!! The staff in radiation have been excellent with Tom, in particular Tracy and Alan, Alan (don't know last name) is a real great guy, very sensitive to the kids feelings, fantastic sense of humor, even bought Tom a game for his gameboy advance just for being brave with some 'issues' of privacy that he had to go through! He really did go up and above the call of duty to make Tom feel comfortable and has made a big difference for Tom, it turned a potentially difficult situation into a fairly good time, nothing was too much trouble, he was great :)

Friday we start the chemotherapy, (Melphalan) something that is not in the same family as the previous chemo, so that may help knock this thing down, 3 days of that which may be a little tough on him, and bingo, we're all lined up for the big one.. JANUARY 8th... TRANSPLANT DAY...we're counting 'em down.

Duke has a great protocol, they treat anything and everything, with preventive care way before things happen, but they have not been without minor omissions/screw ups, tiny things like sending him out to radiotherapy each time without a mask, perhaps we should take care of stuff like that, but there have been other issues, trivial stuff, but things I would not have expected in one of the finest hospitals in the world.

One of the most annoying things being the food, namely the mess ups and lack of help getting it put right. First few days we could not get him veggie food, they kept bringing meat. Then today they bring him a plate of peas and one scope of potatoe, NOT what he ordered. Now there has been a lot of snow, everybody says 8 inches, but it's more like 4 or so, and they had two days warning, I was told by the lady bringing food, that they ran out of food.. ummm the cafeteria didn't seem to have a problem stocking it's shelves, then this evening, pasta with marinara sauce and some soup, ended up as tukey, green beans and potatoe with gravy..for a VEGGIE? Again I explain this is not what he wanted or ordered.. 'Sorry we are short staffed and everybody is getting whatever we give 'em ' . Oh yeah right..sure.. So I'm finding out how to put in an official complaint, this is out of order, food is important! Well we think it is. Oh top it off with radiation therapy at 9am or earlier, they come for him around 8:40am, breakfast gets here at 8:45am+, it's just not gelling right...disappointing, I thought it would be real dynamic here, but I'll be honest, although the care outstrips the UK many, many times over (and I don't mean anything against our favorite nurses in the UK - And you know who you are =:-) ) ... There IS room for improvement.

Yes, there is a lot of snow for this area, they don't have gritters, just the odd snow plough so driving is a little difficult, but not impossible, another 4-8 inches tonight. It's rather cold, but liveable, especially when you are indoors 23.5 hours a day.

December 31st 2001
Well we are in the hospital, things are starting to move forward, the cure is getting closer. Tom was admitted on Sunday 30th, they put him on a drip which will stay up for the next 30 days or more, with fluids to help keep him hydrated, along with a Heparin drip which can help him avoid VOD (A potentially fatal liver disease - For which his previous Mylotarg has increased his chances of getting - slightly). Also had a chest X-ray, they did this in his room using a portable machine.

Checked his weight, he is around 33.8kg to 34kg, which is a higher level for him, so that's good, appetite is still ok, but we're told there is a very good chance that he won't have an appetite very soon. Food isn't too good, Florida hospital had a great menu, we were hoping here at Duke it would be as good, but not really, being vegetarian is definitely not popular around here, for Tom options are slim to none, and for us it's not too good, 99% of the food in the cafe seems to be meat derived :(

It's going to be tough staying here, they are totally geared towards the child, for the parents it's difficult. We have a small bed that comes out of the wall, I bought a nice comfy sleeping bag. We have to walk to the other side of the ward to reach that toilets and showers. We are not allowed to eat in Toms room, we must eat in a family room or down in the cafe. There is nowhere in Toms room for parents to get ready for bed, basically it's Toms room and we can't do anything (apart from drink) in there. It took a while for me to get to the shower this morning as there is only one and I was beaten to it. Tom had to go to radiation therapy before 9am this morning, breakfast did not turn up until 8:50, by that time they were ready to take him down there, the egg and sausage breakfast was not going to work for a veggie anyway :( ... (As well as the lunch which was non veggie).

The big problems are with Amy, his sister (and perfect match donor), she is not allowed out on the corridor, not allowed in the family room where parents can go an eat, and not allowed to eat or drink in his room, she can't even go to the bathroom on the ward, she has to go out into the main hospital, it makes things rather difficult to say the least for us, we're going to keep her away from the hospital at least until the transplant, to make sure she stays healthy, she is happy spending time at 'home' she gets very bored at the hospital anyway.

We've had a few hiccups since being here, the odd forgotten tablet, the messed up meals, and the air pressure in the room was the wrong way around, rather than not allowing air from outside in, it was the other way around, not letting air out, but allowing it in (negative vs positive air), amongst a few other trivial issues, a little disappointing as we were hoping one of the 'best' hospitals would not have any issues at all, but I guess that's just not possible anywhere you go.

He went to radation therapy this morning and it went ok, he sat still with no problem at all, I could not have sat still for more than one minute! He did 15 minutes of total body irradation, plus around 30 minutes of setting up time. So far he is feeling fine (1pm around 4 hours later) but there's plenty of time left for the effects to start taking their toll on him. He's taking anti-sickness (Zofran) through the IV which should help, but some side effects such as the stomach will be unavoidable. He does have a real bed headache, they are getting something for it now, guess that's an effect of the radiation, your head would hurt if they stuck it in a microwave for 30 minutes on full power.

We have the Internet wired up, were using a regular dial up with AOL at the moment but I have it split using a wireless HUB to all of our laptops so we're wired :) .. I will try and get into their high speed LAN over the next few days. If you want to chat with Tom you might get him on AOL Instant Messenger (screen name: skatekid9876), I'd like to see some of his friends on Zone.com where you can play him at games :). As usual I will try and keep everybody up to date. Almost 1 day gone and counting!

December 27th 2001
I was doing so well with those daily updates and it all fell apart!.. Things got real busy.

The date has been set, it was going to be Jan 22nd but they have managed to push it closer to Jan 8th. The basic schedule is that he will be admitted to hospital on Sunday 30th, treatment will start on the Monday. He will have 4 days of radiation, early in the morning and later in the day, he will not have it on New Years Day though. He will also be receiving chemo after the radiation (Melphalan), this will bring us right up to Jan 7th, and then Jan 8th.. The BIG DAY.

The marrow will be taken out of Amy, and as they are not only a perfect match but also a match for blood type it can be put right into Tom without the need to first remove the red blood cells, Amy will probably miss the beginning as she will be in recovery (so will Nicola as she will be with her). The good news is that a matched sibling should engraft much quicker than a cord blood, we've heard of people that have been out of the hospital within 3 weeks or less. Of course once we get him out it's not the end of it, and we'll be hoping for some graft vs host/graft vs Leukemia, where Amy's cells will see any potential remaining leukemia cells and destroy them.

The pain in his line is much, much better, he is totally mobile now, although badly bruised where the new line went in, he is happy that the previous badly installed line was removed. Talking of his line, I have been contacted by another patient of our previous hospital to tell us that they had to have a line removed as it was also very badly installed and dangerous, our nurse did some research on the placement of Toms line and has not found a single patient that has had the line placed in the 'under arm' position that Tom had, what they were thinking of when they did it like that, we have no idea.

It's been a long road to get here, but we're happy that Tom is getting first class treatment.

On a final note, I found out the exact reason for Amy only being a 5/6 match and then being a 6/6.. Even the best hospitals can make mistakes.. Apparently the original tests had a typo in them!

We've not been doing much over the past few days, aside from going to have his lines flushed out on a daily basis, checking his blood counts. He should have needed platelets today but they managed to hold steady at 38, in fact they were 35 the day before so that was good. We got the bone marrow results also, they were 74% in the marrow, around the same as when we first started.

I will try and get some photo's up shortly, with trying to do a little work and handle all of this hospital time, it's real difficult, it takes a long time to prep the photo's for the net.

December 21st 2001
Much better day today. Tom went to have his dressing changed, he was naturally concerned due to the previous painful experiences. His nurse today, Sheila, was real good with him, taking a lot of time to remove the dressing (Tom also did a little) and after quite a while they were removed.. cleaned up and redressed, with a little pain, but not too much at all (His chest is still swollen). When we went in the nurses mentioned they had heard Amy was actually a 6/6 perfect match, first we had heard of it, the previous meeting demonstrated a 5/6 match. Our nurse looked into it and later in the day we found out that sure enough she was, the only chromosome that did not match, was a match, proved with a high resolution test, she's also the same blood type, a total and utter perfect match, there is no need to mess with the red cells before transplant, it'll be out of Amy and in minutes, straight into Tom. Transplant date has been set, unless anything unusual happens inbetween, it's January 22nd.

We also meet with a heart specialist who confirmed that everything in the heart was more than excellent, aside from the soft bones issue, everything else has turned out to be in very good shape. He still has the odd heart flutter even with the old line out, so he has a little machine connected up to him which we took home that will record his heart for the next 24 hours, we have to document everything he does in between.

He is still very sore, but I do see an improvement, no wheel chair today, under a slight amount of initial protest he walked everywhere, which was better for him rather than being crunched up in a chair. Everybody agreed 'he looked like a new man' today, he seems to becoming rather well know around the center already! Must be the English accent, although everbody keeps telling him what a 'cutie' he is. He also had platelets as our Doctor wants to keep him above 50 after the surgery.

Unfortunately the blasts are up in to 76% now, he has been OFF the VP 16 (Etoposide) chemo for a couple of days whilst he gets through the surgery, as we did not want him to start to vomit with him being SOooooooooo sore, the plan is to get him back on it this evening, he'll get it before he goes to sleep. When he will go to sleep is anybody's guess as he went to sleep at 5:30pm and just woke up, 7:35pm.

December 20th 2001
Today was probably the worst day that I have ever seen Tom have. There isn't a word that I can accurately use to describe the pain that Tom went through today. We went to clinic for a blood test, the platelets were 70 which was not too bad, but HB was down a little again so he'll need red blood in the next day or so.

He's covered in cuts and dressings and they had to be changed, this is where the immense pain came in. They had to remove a blood soaked dressing from under his arm where his old line was, they had so much trouble removing the old line that they had to use various tools to get it out, leaving him with a large hole, we were told it was around 3/8ths of an inch when he came out of theatre yesterday, but it was much bigger, I'd say it was well over half inch, they had to remove the gauze that was packed into the hole, the nurse, like ourselves thought it was a little packing, but it was packed deep into his chest and took a lot of persuading to come out, the pain Tom went through was terrible and it took some time

They then had to remove the large dressing on his line/chest, again, immense amounts of pain. The problem he had was the hole was so large that it would not stop bleeding, they had to call a surgeon to see what the best approach was, the nurse felt that they would probably have to repack it and take it out next day and do that for several days, naturally I expressed my concerns about this and asked about doing it under a general or a local but apparently it was not possible. The surgeon came, she was real good with Tom, spent a lot of time looking at it and compressing it, she found that it was a flesh wound due to the opening of the hole when they operated due to the difficulty in getting the line out. She used to silver nitrate swabs to seal it all up, it did burn and hurt but was not too bad for him compared to the swab removal, they did have to stop halfway though and administer morphine. Right now he is on painkillers around the clock, we stopped the codeine as that can have undesirable side effects and switched over to tylenol. He is feeling better now, but can't walk around (wheel chair job) and has to be helped up due to pain in his neck. He is drinking and eating well which is good, but taking his tablets is a little bit of an issue. He goes back on Chemo tablets tonight... In theory.

December 19th 2001
A long, bad day for Tom today, real bad.

It started off with a blood count, the blasts in the blood are in the high 60's which is an increase again, which is progression of his disease, we hope that the chemo tablets will keep it in check. Then he had to have platelets before his surgery, that went ok. We then met with a nurse that shows us how to look after his hickman line as we will have to look after it at home, flush it each day etc, fairly easy really.

Next was off to surgery, he was not happy about it, although he put on a real brave face, a real hero as usual, there was no doubt that a little panic set in when they started to get around to the time to go down there, he was concerned and I don't blame him. They gave him a pre-med which helped lighten the situation, it was quite effective. He had to have a lot of surgery, they removed his old hickman line, put in a new 3 way line, did a spinal tap and injected some chemo, plus the did a bone marrow test.

What we did find out was that when they injected into his bone that it was very soft, 'like butter', due to the large amount of chemo so close to each other, I don't know the full implications of this, but I don't think it's at all good news.

The line that was installed in the UK was a big problem, we were told in the UK that it was in too far by 2mm, and that it was touching a node in his heart, hense the problems with his heart going up to 250 beats per minute. It turned out that the scans showed it was actually too far in by 4-5cm! WAY TOO FAR and potentially dangerous, this obviously infuriates us that he was allowed to suffer so much in the UK, it was also painful for the last 6 months because it had been forced under the pectoral muscle, they had a real hard time getting it out and had to open a small hole in his chest, they were not impressed. Oh, and it no longer goes up his chest, into his neck and down again, he no longer has a tube in his neck! They then did an xray to check it's position and they are real happy with it.

Tom was in a huge amount of pain, maxed out on morphine and other drugs, so many that it looks like he is going to sleep the entire night. Add that to the 3 painful teeth extractions yesterday and all the bruising he has now and it was a pretty bad 24 hours

December 18th 2001
Went for a blood count, platelets are low but not quite low enough to receive them. Met with the pre-op to go over his procedure and to answer questions about his health, tomorrow his hickman line will be removed and a new 3 way line will be added, plus he is having a bone marrow test and spinal tap, it's going to be a very rough day for him

. We received the information about the HLA testing for all of us, Amy is not a perfect match afterall, it looks like she is a 5 out of 6, they have one chromosome that is different, Amy's is like mine, and Toms like Nics. They are running more tests, two of the chromosomes that match Nic and I BOTH have so I presume they are testing to see which belongs to which to make sure that the 5/6 is accurate, at this time we do not know 100% for sure that they will use Amy, but I'm fairly confident that they will. There are two sets of tests, the initial ones show perfect match, (a3,a11,b7,b55), the 2nd part showed Amy as DRB1 01, DRB1 14, and Tom as DRB1 01, DRB1 04. The 2nd one is different. I have the 14 also like Amy, and Nic has the 04 like Tom, we won't know the results for a few days.

We then took a trip to the dentist, they have to check everything to make sure that he has no hidden cavities/infections, or anything that would bother him in the near future when his counts will be down, unfortunately they had to remove 3 teeth that were on their way to being lose, with just the numbing gel, ouch! They were supposed to have come out easy, but the first one more or less flew across the room, and it hurt, it didn't go at all way, very uncomfortable and painful for Tom, and due to his low platelets (23) he is now spitting out blood, we may have to take a trip to the hospital tonight for platelets, time will tell. Btw: There goes ANOTHER $450.00

We had a few results from the CT Scan, so far everything is looking good and aside from the leukemia he's in pretty good shape, which is a relief.

The chemo is reducing the blasts in the blood day by day, which is good.

December 17th 2001
I can't believe were days from Xmas, seems like just another day at the office. We went back to hospital today, bright and early as usual. Today he had a CT Scan of just about every part of his body, we also a long meeting about his current results and also a meeting with a teacher. The kids are officially enrolled in the Durham education system, after the holidays they are going to start giving them around 45-60 minutes of education per day, and they will work with Amy and Tom at the same time, he believes that he should be able to bring them up to speed so that they can catch up the lost time.

The results we received so far were positive, nothing horrible turned up, Tom and Amy are in good shape. Amy did test positive CMV which is a virus that once you get it, it stays for live, 90% of people test positive, it's inactive just something she had once, like chicken pox etc. Tom tested negative, but as he is getting Amys blood, he needs to receive protective medication against this now, which is a shame, it does have the potential to be something that could activate itself in Tom and be a real issue, however as 90% of people have it anyway they are not worried, the benefits of a matched sibling donor vs this far outweigh the risk. We also found out that Amy also has O+ blood type, same as Tom, Nic has O- , and I have B+, a real mix up.

We don't have the HLA bone marrow match test results back for any of us yet. He had a hard time with the CT scan as there was quite a lot of movement back and forwards, nothing to bad but he had felt sick before due to the chemo he was taking and had already vomitted just before going in, he didn't make it all the way through the test without being sick again. He had to have an agent injected into him and that didn't help, it's highly toxic to the kidneys so he has to try and drink as much as possible over the next 2 days.

He is feeling much better now, I found his favorite veggie foods this evening, so that's a big boost for him, in fact he's helping himself right now.. Oh, his weight is up, 33.9kilos, or 74.5lbs.. which is v.good for him.

Dentist tomorrow, and he will have the hickman line removed and replaced on Wednesday plus a bone marrow test and spinal tap (inject chemo into the spine also), it's going to be a big one. The test results showed that the line is definately way to far into his heart and a risk to him.

Oh.. I picked up another $500.00 of medication today.

December 6th - December 16th 2001
WOW... What a busy week or two. Finally I have managed to sit down and update the site, I'm hoping that I will now be in a position to keep the site up to date more often. As many of you know, we're in North Carolina now. This is a big update, I'll try to summarize the last week or so.

Just to bring you up to speed, we're in North Carolina, Tom is having a bone marrow transplant at Duke University, after coming to the end of his treament in the UK with no remission, and here's how we got here -->

I spent a lot of time researching different centers throughout the world, and I was consistently lead back to a handful of centers, one of them being Duke University Medical Center in North Carolina. I spoke with many parents of children that had been treated there, also saw a video on the BBC which featured our doctor (Prof.Joanne Kurtzberg) and I was very impressed with what I saw and heard, the decision had been made, we MUST get Tom to this center. Our next hurdle was the money, after a lot of emailing back and forwards we came to an agreement, or at least the lowest they were going to go which meant I had to put $115,000 in cash down, $15,000 down in 6 weeks, and then pay $2,500 a month off the bills for 3 years.. ouch... what I didn't realize is that all the prescriptions that they were to write for him would have to be collected and hence paid for by me, and we're talking very expensive medication, one prescription had medication at $50.00 per tablet!!! We could be getting into well over $20,000 in medication, time to get that fund raiser going!

Anyway, let me get back on track and try to put this into some sort of order.

The Journey First stage, get Tom to the USA in one piece, with no viral infections, with his immunne system being so low, not an easy task. I made a LOT of calls many of them to no avail, most airlines could not help at all, British Airways being one of the most unhelpful of all, I won't be using them ever again! I spoke with a company that was very helpful, they were able to purchase empty legs on planes returning for maintenance, positioning etc, or obtain private planes, problem was that they were unable to obtain any empty legs, and the private jets cost around £30,000+ ($43,500) with 2 stops, or direct for £75,000 ($108,750). After a heck of a lot of phone calls, the airline we've used the most in the past Virgin Airlines were the ones that did all they could to help us, they gave us an excellent deal on first class tickets which enabled us to travel in a virtually empty cabin, although we shared the same air as everybody else. We masked Tom up were we could in the airport etc and crossed our fingers that he would be okay on the plane, and he was, he travelled very well and it was as smooth as could be. The staff we're great and we're always going to make sure that whenever a need arises Virgin will be our airline of choice, we recommend that if you ever have to choose that you keep them as an option :)

Stepping back a little, our immigration visa's had ran out, our new visa's had been put on ice by the immigration services due to the September 11th terrorist attack no visa's were being issued. I quickly put an application together, sent it off and crossed my fingers, I also fell over with shock when they were returned approved and ready to roll within 4 working days!! That was a huge relief. Back to the flights... So.. the flights were booked just a few days before, I think it was the Wednesday, we were set to fly on Sunday morning...from London. Now.. I didn't realize that the airport (Gatwick) we were going out of was the furthest away of the two main London airports, we got to bed at midnight the night before, and had to fly at 11:15am the next morning, I was told the trip was four and a half hours, even on a Sunday morning, and I might hit traffic still...darn...Thanks to the awesome power of the V6 Galaxy, we managed to snip it down to 3 hours =;-), .. We had to get up 4am and leave at 5am, now that's not a good start to the day, I hate early mornings, luckily we did not hit traffic.

Oh, I need to back up again, Tom went to the hospital the night before (Saturday) for platelets, we should have been in and out within 2 hours, but guess what, his hemoglobin was down to the point where red blood was advisable, otherwise he may not have travelled to well, now red blood takes hours to put through, and we have to wait for them to get it, Dave Haynes to the rescue, Dave came down, watched over Tom whilst we drove home, continued to pack up, then back to hospital to pick him up and say our goodbyes to all of the nurses, unfortunately our doctor never made it to come and wish Tom good luck and say goodbye to Tom.

Sunday afternoon (US Eastern Time) we are in Orlando after an uneventful, dare I say almost pleasant flight, yeah okay, I must have slept a good 4-5 hours :). Off home we go, things were as we left them, slept over night, Tom met with a friend or two, although he was very disappointed that he could not meet with Wes (His parents had colds so it was too risky), slept Monday night.. We wanted to make sure Tom did not have a virus off the plane before we hit the long drive, we re-packed up Monday/Tuesday morning, and hit the road for North Carolina. I thought it was a 7 hour drive, but everytime I spoke to somebody the time seemed to go up, I was at 12+ hours...oh no!... The map I printed off the net said 10 hours 20 minutes of driving. Now don't ask me how I did it, but that trip was also sliced down to a little over 8 hours driving, it actually went quite quickly also, I managed to grab 4 hours sleep on that also, joke :)

We managed to find our way into downtown Durham in the evening, it was very dark and raining, and I didn't have a map, we managed to find the hotel where we stopped for a few days whilst we tracked down an available apartment. We managed to find a town house which was in a relatively new complex, it's only 1 year old and they were able to rush the previous people out and get it ready for us within a few days, it's a 3 bedroom, 3 and a half bathrooms, and a garage, and it only takes around 7 minutes to get to the hospital. It's a little weird as they are built on slight hills, so it has two sides, at the front it looks like a 2 storey, at the back it has the garage, but looks like a 3 story. Amy's bedroom is downstairs, living area in the middle, which is level with the road (almost) and then our bedroom and Toms is upstairs. She would not sleep down there last night as she is not too happy about being down there on her own. The weather is now real nice, fresh/cool but bright blue skys, around 55 degrees, but as these houses are designed for air conditioning, the heating is not too good, as the heat rises, upstairs will get to a million degrees if you're not careful and downstairs, Amys 'quarters' will be -5, so I've had to add a heater in there for her (just a little trivia for you).

Of course when we got to the apartment we had no furniture, so we hired all of that, they are quite good with people in Toms situation and only provide new furniture. Then we had to hit the stores several times, we had no plates, towels, lamps, microwave, nothing, just like starting again....again..Oh and worse still..wait for it.. no TV!!! ARGHHHH.. Anyway, we soon put that right. Now if anybody has a spare million dollars, now would be a good time to speak up! :)

So here we are, first night settled in, watching Tom and Amy play Nintendo, ready for the day ahead. One thing I forgot to mention, the first night we arrived here we did not get to bed until 11pm and beyond, we had done the real planes trains and automobiles, travelled half way around the world, we were tired out, and a few hours before arriving I had received a phone call to my cellphone from the hospital, we had to be there at 8:30am the next morning, so up we get at 6am.

The Center Duke University Medical Center has an excellent reputation for handling difficult cases like Tom, they are the largest pediatric transplant center in the world. The transplant center is headed by Professor Joanne Kurtzberg, world renowed for getting results, some of you in the UK may have seen Horizon a few months ago where they featured cord blood transplants, Joanne K. was the main featured doctor, pioneering cord blood transplants! She REALLY knows what she is doing. The center is huge, employing over 10,000 people, it's like a mini city, made up of many different HUGE buildings, it's also very modern. They even have a train system, little pods that zip back and forwards from one main building to another! The main car park is bigger than our previous hospital!

When we first arrived we had meetings with a LOT of people, we have a nice collection of business cards, I'm still trying to figure out who does what.

Toms conditionTom started with a pile of tests, our schedule didn't give us time to get our breath, we finished the first day after a meeting with Prof.Kurtzberg at around 8pm, a 12 hour day! They are currently testing every thing possible to obtain a clear picture of Toms current health, they are digging deep, real deep to find any possible hidden infections before they give him radiation therapy and start to wipe out his immune system leaving him vunerable.

So far he has had extensive hearing tests, respiratory tests, a lot of heart scans/echocardogram and a scan of the vessels in his neck. They are scanning his neck as they want to remove his hickman line. They are very unhappy with his current one, first of all they don't like the position of it as they feel it may be open to infection after the transplant, plus due to Toms previous history of heart rate increases which was previously believed to be caused by his line being too far into his heart, so they want it out, in their opinion it is potentially dangerous to him. We have a meeting tomorrow morning to discuss this and other issues but Joanne is pretty sure that she wants to see it taken out, they will also add a 3 way one rather than a 2 way which is better for the transplant.

Amy has had blood tested as they did not have enough information from our previous hospital, and they will re-test her to make sure she is a perfect match. We're hoping to have the results to the tests tomorrow, I believe it only takes 2-3 days to get results.

Nicola and Mark - HLA Tested! They have also tested Nicola and I to see if we also match Tom, one of the main reasons for this is that they can use white cells from one of us to put into Tom to help him fight infections, here's the scary part... It was easy for us to tell Tom 'you'll be okay, and tell him he's so brave (which he is)' .. they would want to put a hickman line in the donor..ouch! Nic is obviously braver than I am about it, I was scared to death when they took my blood the other day, I actually got them to give me some of the cream that numbs my arm, I have a feeling it's normally reserved for kids :) .. Hey I'm a whimp, but at least I admit it!

Back on Chemotherapy Tom is back on chemotherapy, in a pill form, he takes one a day at the moment. The last two tests of his blood showed that the blasts had increased from 50% to 70%, which was very disappointing indeed. The chemo tablet should keep them down until the transplant. We're going to be running lots more tests and meetings until December 22nd and then we're not back until Jan 2nd, when he will start the radation therapy, if all goes to plan the transplant will probably take place around January 14th, however there are a lot of unknowns between these dates that can move this date in either direction.

One of the risks to Tom with the transplant is VOD, a liver disease that can prove to be a BIG issue for Tom, the previous dose of Mylotarg can also increase his risks of this potentially dangerous disease. What we have been told is that there is a drug that can be of great benefit towards treating this, the current medication tend to help avoid it rather than treat it. This new medication is only available at two centers at the moment, Duke is one of them.

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