CURRENT INFORMATION

September 23rd 2001 Oh boy, am I getting a little slap happy with the updates!!! It's been very, very busy, but that's no excuse, I will try and keep it more up to date from now on..honest :)

Well..what's been going on... Tom got out of the hospital a few weeks ago, although he was considerably sicker on this round of chemo he bounced back quickly. Although his blood was flat from the chemo they allowed us to go home as the doctors have expressed that they want to give us as much quality time at home as possible.

Throughout his stay at home Tom did spike a temperature, and once that happens it's back to the hospital, normally he would have to stay in but they allow him to go home, the only problem is that he has to drive back to the hospital (30+ minutes each way) every 12 hours for anti-biotics as a precautionary measure whilst the blood cultures grow, this happens for 3 and a half days. If the temperature runs high at night the 12 hours still apply and this means at times we were getting out of the hospital at all hours, getting home as late at 3:15am, this happened a couple of times, add that to the fact that each week he also requires blood and platelet infusions (twice a week), the platelets can be taken care of in little over two hours, but two bags of blood can be a 10 hour job, and they have to order them in, so we've spent quite a lot of time at hospital, on saying that we have also had a lot very good quality time at home. And by the way the blood cultures came back ok, each and every time, showing no infection.

Moving on from this Tom had his friend Brandon here from Orlando. He had a few bad days in hospital, but overall we made a great time of it, Tom really enjoyed having one of his old friends over... for a month.. He was supposed to be here for 2 weeks, but we adjusted the ticket so he could stay longer as Tom had been in hospital for a while, then the day before he was supposed to go home the terrible situation in New York to which there are no adequate words to express how outrageous and saddening that was! Due to that, his ticket was delayed around 1 week. I have added several photographs covering all the different things that we got up to, including our trip down a 600 feet deep disused lead mine in a boat.

On a final note, it appears that the information concerning Toms condition was not initially accurate, we were told Tom did not have any chromosomal abnormatilies, this is not true, we recently found out that on the 2nd, possibly 3rd bone marrow test that they found an abnormality, why we were not told the exact specifics, I do not know, we were just informed that it was an agressive leukemia, the abnormality is monosomy 7, which means that the leukemic cells have one of the chromosome 7's missing, there should be two, but they only have one.

What does this monosomy 7 mean? It means that it is very good at resisting chemotherapy, and hence Tom has not entered remission so far, which explains why Tom is having such a hard time. So where do we go from here? I have spent the last few weeks doing little but research, and (as mentioned below) came up with a drug from the USA called Mylotarg, a new monoclonal antigen that attacks bad cells only and leaves the good ones in tact, it's had reasonably good success with 1 in 3 people going into remission. Without remission they will not do a bone marrow transplant in our hospital (even with the perfect match we have from his sister Amy) and probably not in any of the other UK hospitals, unlike the some of the top USA hospitals such as the Fred Hutchinson in Seattle, Washington, where they will do it, of course in the USA it is not free like our national health service. Bone marrow transplants in the USA start at around $200,000 and can easily go up from there.

Wow... this is a big update...Moving on, We have decided to have a 2nd, 3rd and 4th opinion. We have discussed this with Toms doctors and they support our decision, our consultant is currently putting the slides and medical information together and we will then fed-ex over to the USA to two places, to Dr. Howard Weinstein, Massachusetts General Hospital, considered to be a senior world authoritative on AML, and also to the Fred Hutchinson Hospital in Seattle. Our consultant is also arranging for a meeting with an associate down in London at the world renowned Great Ormond Steet Hospital in London. Between all of these people I am hoping that, perhaps something will come to the surface.

There is no doubt that the next 2 months are going to prove difficult.

I should mention that we are very well settled in the new house, Tom has lots of his old friends coming around to play (we screen them all!! Flu is going around, Amy got it and we had to keep her at bay, mainly watching videos in her room).. He does a LOT of bowling, we go in the morning when the place is empty, and he plays a little football on the front, nothing too rough of course, we've also been on some fantasic walks into the countryside, fed ducks, gone to the park and so on. Out of all the hats he has, he never seems to take of his little black £1.95 woolly hat which we hastely bought on the way out for a country walk when the temperature dropped a little. (Hey it was the only one we could get our hands on at the time), I'll snap a photo and upload over the next day or so. Over all he is doing very well in himself, enjoying an almost normal life, eating well, and having fun.



September 2nd 2001 The last few days have been rather difficult for Tom. He has spent a large amount of time feeling sick and some of this time being sick. This round of chemo is really knocking him off his feet. The other day and also today he was given the opportunity of going home for the day but refuses to go as he can't take the journey, it will make him too sick.

He is still not eating much and getting him to drink can be difficult. Something didn't tick quite right the other day and after having a good day drinking (which is important), of over 2 litres of liquid, a record for him, but only a very small amount came out, we are not sure what happened but medication the next day took care of that and everything appears to be ok now.

More importantly we did have a more serious issue, Tom was being sick and was not well, they normally give him anti sickness over a 30 minute period into his line, as he was so sick they decided to inject it straight in with as much dilution as possible, this is something that is very common. However minutes later Tom had a reaction (or this is certainly what we are putting it down to), he suffered a very large burst of energy, which might not sound like a lot but we had to peel him off the walls, he just didn't know what to do withself, feeling like he had to go running immediately but also feeling very ill, it is difficult to describe, it was certainly highly distressing for Tom, he slept it off for 5 hours.

We're hoping that we might take him home tomorrow if he is up to it.

August 29th 2001 Sorry for the lack up updates, we have been on a bit of a rollercoaster with Tom. I will try and document as much as possible.

On August 22nd we got the results of the bone marrow test, they were not what we wanted to hear, the target of the protocol that he is on looks for a remission within the first 3 rounds of chemotherapy, Tom's 3rd round was a very high dose (22 times the normal dose - as he had not achieved remission in the first 2 rounds), so we were hopeful. The results still showed Leukemia in his body at 60% blast cells, an undesirable result.

After talking with doctors we agreed that we should continue to fight on and go with another type of chemotherapy. When we started there were two types of medication available to us, both similar chemo's, we are now using the 'other' one in the hope that perhaps this can unlock the resistance that the Leukemia is putting up right now.

Tom had an echo scan of his heart which showed that he is still as strong as an ox. If this round of chemo does not work then we are going to use a drug called Mylotarg, which our doctors are going to bring in from the USA. I spend a lot of time reading the digests of the AML and Bone Marrow discussion groups on the Internet which is where I found a lot of positive information on Mylotarg, I took this to the doctors, who had also heard of it and we agreed it was the way to go. Mylotarg is not officially in this country and I don't believe it is FDA approved, it has been under trial for some time with some impressive results, like any drug it carries potential issues, although it does work in a different way to chemo, for instance it does not make the hair fall out, it attacks bad cells only.

We did get a few days at home after Wednesday but due to the lumbar puncture that Tom had he was real sick, he lost a little too much fluid and did not travel well, he was throwing up more than we could get into him, he also needed to come back for blood tests. As we could not get fluids into him he ended up staying in hospital when we brought him back, he had constant painful headaches and could not sit up without feeling very sick, even with pain killers. Why I did not bring myself an overnight bag.. I have no idea! Duhhh!

Tuesday he came back in and started the new chemotherapy, so far he is handling it very well indeed.. He is drinking but not eating much, looks like he may drop a few pounds. We will be in hospital for the next 10 days for chemo, then they will send him home as they have told us that under the circumstances they want us to enjoy as much time at home with him as possible... I am sure we will make lots of trips back and forwards still as he will probably run tempuratures after chemo, plus he will need blood and platelets.

His platelets are extremely low right now so they have had them driven up expecially for him by ambulance taxi, they just arrived, the count was only 7!!! A normal person has around 150-400, once they get this low hemorage is an issue, and his gums start to bleed.

Unfortunately the break was a bit of a disaster, on the Monday before we brought him in we we did manage to go Ten Pin Bowling, Eddie the owner of Video Vault in Hadfield was good enough to let us in before it opened so we had the place to ourselves, it was a big boost, I'd say the most fun we'd had since this episode started over 3 months ago.

Saturday morning we also had a visitor, Brandon Chapman from Orlando, Florida. Brandon was one of Toms best friends when we lived in Orlando, he's making a great Playstation partner! :)

Tom's hair is started to grow back, ever so slightly but the chemo will make it fall out again in the next few weeks, it is actually growing back a blonde color! Apparently the medication can change the color of your hair, although there is only a little hair so it's difficult to be totally sure.

August 21st 2001 Sorry for the lack of updates (as usual), it's been hectic, let me try to bring everything up to date. Although his blood was not recovered they allowed us to take him home, and return each day for GCSF injections. However 72 hours later he ran a tempurature (only for a few minutes) which we had to call in, and we knew what they would say 'Bring him in'. Automatically he receives antibiotics, then we wait 48+ hours for blood culture results, in the meantime we have to stay in hospital, there went another weekend.

Tuesday afternoon, blood culture test showed ok, so we leave. We have been in and out with him, every day GCSF and then sometimes long waits at hospital for blood transfusions. The other day his heart threw one of those 'things' where it went to 220bpm and they had to bring lots of different doctors and ran an ECG, it went on for over 1 hour and they were about to inject him with a drug to slow it down as the waves were not correct, and just before they were about to do it... it returned to normal!!!.. There went another full day, we got home late.

Today we came in to find out he needs platelets and they turned up late, we got here first thing in the morning, it's 6:30pm and they just arrived, we should get home just in time for bed, to get up and...wait for it.. come back to hospital.

He was supposed to have a bone marrow test next Wednesday as his count was not quite high enough, however they looked under the microscope and although they don't say they saw a problem as such, they are not sure if they are good or bad cells and have decided to bring the bone marrow test forward to tomorrow, either way he will then enter treatment immediately afterwards, so our chance of a decent break has been dashed, most of the days we had out were spent at hospital.. oh apart from Saturday, we went to an airshow, the police allowed us into a restricted area so he could stay away from people, it was a two and half hour drive but due to the large amount of traffic and an accident in a tunnel it took four and a half there, and three back.. ouch... we missed a lot, it rained a lot, but what we did see was excellent.

On another note, the morning of August 20th was extremely upsetting for us, if you have been looking at the photo's you will see Tom made good friends with a young girl called Amy and Beth. Due to some complications (infection) we were informed that Amy has passed away. We were very close to Amy and her family and words could not possibly express had saddened we all are over this sudden loss. 'Little Amy' meant a lot to Tom and she will be missed, she had a great sense of humor and helped everybody forget just what a horrible situation we are all in.

Back to Home Page