CURRENT INFORMATION
December 6th 2001
Sorry, I have to keep this brief as I am VERY busy getting ready for the trip. Here's the deal...Tom has reached the end of his treatment in the U.K, he still has leukemia, 45% blasts in his blood. The monosomy 7 that he has is notorisly difficult to treat with chemotherapy, and a bone marrow transplant is what he requires.
A transplant whilst in remission would have been ideal, but the monosomy 7 is not allowing us that benefit and therefore we are proceeding to transplant with disease present. After many weeks, make that months of talking to people through the net who are being treated for AML leukemia, I found that there were several centers that really seem to be at the forefront of treatment. One of them being Fred Hutchinson in Seattle, which I was never able to negotiate a financial deal with, and Duke university in North Carolina. Dr. Kurtzberg at Duke has an immpeciable reputation and has been very helpful with us over the past month or so.
Although I was unable to negotiate the rate that I wanted I got to the point where I had little choice but to take what they were offering me, which was a substancially reduced deposit, but a very, very small discount on charges. My billing is limited for the next 3 years to an affordable amount so I don't have to worry too much, sometimes there are more important things to worry about.
We are going to be flying into Orlando on Sunday 9th October in the afternoon, staying in Orlando to make sure that Tom does not run a temp' and then hitting the road up to NC as soon as possible.
Although I believe it's a 10+ hour drive which is going to seem like the end of the world to us, perhaps some of our Orlando friends will be able to make a weekend trip out there to support us? It's probably going to be rather lonely up there on our own. Please post into Toms guestbook if you think you will be able to come visit us!
Well, I have to rush, I have to start getting all the junk together for yet another move... One day I hope to kick up my feet, sit still and..wait for it... relax.. Some have said that is impossible for me, I hope to prove them wrong LOL
November 22nd 2001
(Please also see Nov 16th update - not previously uploaded)
It turned out that Tom had a bug in his hickman lines, actually two in one, a one in the other line. They took cultures and had to grow them over several days to identify exactly what they were, until then he gets broad spectrum antibiotics. For an unexplained reason they did not grow so they could not get sensitivities so they could use the antibiotics that would work best for him. After a few days we found out that one of the bugs had gone. They actually thought both had gone and sent us home, but after a phone call for other information it turned out that a bug had appeared still in one line. At this point we had spent several days sleeping on the bone marrow transplant ward. We were then allowed to go home and drive back every twelve hours, and now we're down to every 24 hours
We are still awaiting results of the Mylotarg, on the 20th our doctor looked at Toms blood under the microscope he still has blasts in his blood, there is time for it to work still, if it had worked it would take up to 30 days for the bad cells that would already have been present in the blood to die off. He may be having a bone marrow test next Wednesday to confirm his current medical situation and this will give us accurate information with regards to the amount of leukemia present.
If a remission is not achieved they do not transplant here, however, remission or not, we have decided to take him to the USA for treatment..Why? Because we believe that the have larger units with more experience of difficult cases such as Toms. Thanks to Monte for helping us negotiate with the Disney Memorial Cancer Institute (Florida Hospital), they have agreed to do it for a fixed price (That would not drain every single penny) including the necessary 100+ days of supportive care afterwards, although it would be a big plus to be in Orlando, we have to consider the fact it is a small unit, and although it's a good hospital (remember when we went to Orlando we ended up there for many days), if we did have any complications we feel that Tom would be better in a center which has a huge amount of experience.
My research had led me to several well known centers, I have mentioned Fred Hutchinson's in Seattle in the past, unfortunately I was unable to work with them to fix a price which I considered reasonable, another center on my list was Duke university in North Carolina, around 10+ hours drive north of Orlando. It also turned out that a friend of a friend was a good friend of the professor there.. professor Joanne Kurtzberg..does that make sense? :) ... I have been working with her for some time now and she has been extremely helpful, after many, many emails it appears that they are prepared to work with me also, although I have been unable to obtain a fixed price which I really wanted, they are prepared to take a deposit that is considerably less than they originally requested. The only issue I have is the amount of discount off the regular invoice price which I requested, this has not been clarified yet and probably won't be until Monday.
We have not made it to Alton towers yet, we are supposed to be going on Tuesday night, returning Wednesday afternoon, but he might be down for his bone marrow test..We will have to chat with the doc's.
Tom has had a lot of nausea and had a lot of trouble eating, actually it's been more like a loss of appetite. His weight had dropped a little still, but we've managed to get enough food into him to stabilize his weight, the last few days have become better, 3 trips back from hospital required 3 trips to Pizza Hut! Weight is coming back on, which makes him around 32kilos, around 70lbs.
November 16th 2001
Well I spoke to soon, what a horrible night. Late last night, but technically the early morning of Nov 16th around 1am Tom's temperature crept up to 38.4, which is time to go to hospital, I decided to check him a little later on to make sure and it went up to 38.9, so we had to wake him up, get our stuff together and pack him off to hospital. We left around 2am, and by the time the doctors had checked him out and administered the anti-biotics we didn't get home until 4:30am, and got into bed around 4:45am. But here's the problem, we normally take him back on fowards for anti-biotics every 12 hours so we can keep him at home but they have changed the the medication and protocol, it's every 8 hours!!! And it's a heck of a drive. We brought him back to hospital this morning and we have a problem, the temp is still up, which is a first for Tom, so we have to stay here for 3 days, basically until the end of the weekend... =:-(
He's okay in himself, not eating enough still, very bored as well, looks like we will get to transfer from the regular ward over to the bone marrow transplant ward.. GREAT! Nice and quiet, big private rooms. I forgot to mention that he had an xray yesterday due to the pain in his chest and everything turned out ok. He's alsleep right now, somewhere I'd like to be right now, this is rather tiring for all of us. Nic and I are taking turns staying the night with him.
November 15th 2001
We've spent a lot of time at the hospital with Tom due to a rather bad bleed in his mouth due to low platelets, we've had to get platelet infusions a few times and then he had to have red blood (2 bags) as he was getting rather pale and tired, and his count dropped over night. There was a possibilty of him having to have a feeding tube up his nose into his stomach, but I think he may have managed to avoid this. He was getting a little low on weight as he was not eating well, the Mylotarg gave him nausea, however after a lot of painstaking work at this end we managed to get him to eat little snippets here and there, drink the odd weight gain drink with nutrients etc, but it's been very difficult. He is still not eating as well as he could, but day by day his weight is coming back, hopefully quick enough! The weight gain will hopefully keep the feeder tube away.
On Tuesday 20th we go to Alton Towers Theme Park, the park is closed, but they have a cool hotel with some themed rooms, we have managed to sneak into 'The Chocolate Room' (This is bocked up for 12 months! So leukemia has it's advantages - BIG thanks to Alton Towers) it should be a nice break - Just one night, we just need to time those darn platelets so that he is not in need of them before we go, but that's difficult as he has them every 3-5 days and it keeps changing at the moment...ummm...not sure what I'm going to do about that yet.
That's about all, he's doing ok, feeling fine. OH .. His hair is growing back nicely, I'll try and sneak a photo on the web site shortly... and an finally.. getting weight on somebody that is not easy
November 3rd 2001
(Please also see the October 28th update below which was not uploaded in time for a further update as this update took several days)
Yesterday Tom started the 2nd and final dose of Mylotarg. Unfortunately a few hours after infusion he started to show the same symptoms as the first dose, his temperature started to increase and he started to feel sick, shortly followed by vomiting. He was subsequently put on antibiotics, this time however his blood pressure did not fall, instead it increased which is normal when you run a temperature. He was taking his maximum dose of anti sickness medication and temperature reducing medication but nothing can hold back a temp/sickness when it reacts like this.
Two hours later, around 11pm he started to feel better, the temp had subsided and he was eating and drinking (lots of water), around midnight he tucked into bed (they did have his IV up for hydration) and didn't get up until well after 10am the next day. He felt ok and they stopped his antibiotics, normally it's 3 days but they agreed it was the Mylotarg causing the problems, we have him at home, he's feeling ok and we're just carefully monitoring his temp and blood pressure to make sure that nothing is brewing. It's around 6pm right now and so far so good.
In the next few weeks we are going to have to make some huge decisions, as many of you know, they will not transplant Tom if he is not in remission they will not transplant here in the UK and we have to go to the USA. I am making preperations for this, of course if he is in remission they will transplant here, or we can take him to one of the USA hospitals, in the UK there is no costs, in the USA without insurance, it's going to get right up there.
I am in contact with several centers in an attempt to negotiate a fixed price that will not spiral out of control. One of the more interesting centers that I am talking to is the Duke University in North Carolina, aside from having a great reputation it's only (from what I'm told) 7-8 hours drive from our home in Orlando, although Tom will not be in a position to go more than 20 minutes drive away from the hospital, it opens up the possibilty of some of our dedicated followers to make a weekend trip out of it :)
October 28th 2001
My apologies for yet another delayed update. With the move into the new house, lots of hospital time and trying to keep on top of my work, it's been proving difficult to keep the site together, I promise I'll do better in the future... :)...Oh, I also need to add into there that I also spend a huge amount of time I spend researching Toms situation and potential steps we could take to get him through this.
It's been so long I'm trying to remember what we have done. Well for a start we were invited down to Royal Air Force Valley in Wales(Thanks Laurie French for making this happen), we had a great time there and I've set up a page dedicated to this day out with some photographs.Click here for more details
Another thank you out to Aunty Karen for setting up a day at a Manchester City Football to watch them play a match a football match, click here for details of this day out.
How could we forget... The BIG trip to Orlando, Florida, 5th Oct to 14th Oct. Plenty to write about here so I've also thrown this into a separate page also.click here for details of our Orlando visit.
Now, over to the medical situation, it's been a real battle for Tom, after his 4th round of chemotherapy we found out that he did not have a remission and that he still had around 50% blast (leukemic) cells in his blood, this was obviously very upsetting and disappointing for all of us. As I have discussed earlier I had already performed massive amounts of research and brought Mylotarg to the table, although not used in the UK it was recently approved in the USA by the FDA for adults use under certain situtions, our doctors agreed it was a good choice and we set him up for this.
Mylotarg is a targeted therapy that is given once in the I.V. line over 2 hours, then 2 weeks later we get the same again, in between he can go home and travel back and forwards for platelets and blood infusions. One in three treated with Mylotarg get remission, and I have tracked down 4 cases of children in the same position as Tom that did obtain remission with Mylotarg, so we are optomistic. The only issue I do have with it is that most of the people in the test have been in remission before but replapsed, oh, and it can also cause problems with the liver which they will monitor. (VOD)
He started the Mylotarg yesterday, normally there are little to no symptoms, unfortunately he was nothing short of hammered, it hit him very, very hard compared to what he was used to. He was ok for a few hours and then his temperature shot up to over 40.5, he started to feel very sick and then started vomitting quite badly. This continued for some time and then his blood pressure dropped to a critically low level which was rather discouraging, they had Nic try and wake him and talk to him while they connected him up to hemocell a medication that helps prop up his blood very quickly, over the next 12 hours his blood returned after a a few small drops. He was supposed to go home but felt to sick. We ended up staying that day/night and leaving later the next day. For several days he felt very sick although all of his vital signs were ok, he could not eat and lost almost 5lbs in just a few days!
After getting over this intial sickness Tom has slowly returned back to his normal self, but it has taken over one week for him to pick himself up. This evening he is full of energy, being a little crazy, dancing around, eating away...'Tom is Back'. On Friday he will receive another round of Mylotarg, the 2nd and final round, I believe that this round will not hit him as hard and he should be ok (according to the very helpful research nurse at The Fred Hutchinson Cancer Research Center in Seattle which has been extremely helpful.
After this next round of Mylotarg we will wait for Toms blood to recover which I suspect will be no more than 5 weeks, at that stage we will have to make some big decisions, if he does not receive a remission the consensus from all of the doctors I have taken advise from in the USA is that is would be futile trying to obtain a remission and will only increase risks of serious complications, they recommend that we transplant without remission regardless of the amount of blast cells in his blood, as many of you know, in the UK they refuse to transplant unless they can get him into remission, therefore we would have no choice but to take him to the USA for a transplant, I am currently lining up several options within the USA. On the other hand if he does achieve a remission they will offer a transplant here. We then have to asses the situation and decide where we feel the greatest chances of success lie, although protocols for a transplant are very similar and standardized there are some subtle differences, plus the management of the patients can vary from center to center, such as the types of blood tests they run, cleanleness/management of infections and so on. Looking at the following web site http://www.marrow.org/cgi-bin/NETWORK/map.pl?ctr_typ=TC you will be able to see that figures vary considerably.
One of my favourite centers is the Seattle Cancer Care Unit (AKA: Fred Hutchinsoins), one of the worlds largest and renowed centers, they take on difficult cases and their figures speak for themselves ( http://www.marrow.org/cgi-bin/NETWORK/ctr_display.pl?ctr_id=501%20&state=Washington&st_abbr=WA&p_src=map ) They have been VERY helpful with offering me ongoing informatioin and I have spoken with many people treated there that also confirm they are excellent. I have been attempting to negotiate with them but so far they have not been very receptive, requesting $200,000 cash down followed by 10% discount in billing, however insurances companies such as 'lifetrack contract' receive up to 60% discount. I am currently working on this. Oh I must not forget to mention that Alison and Paul recently paid us a visit from the good ole' US of A, although Tom had a lot of hospital time we still managed to have some good days. Well that's about it, I'll try and keep the site a little more up to date from now on... honest :)
Don't forget to check out the pictures page