CURRENT INFORMATION
May 11th 2002
We're not going home on Wednesday, plans have been put on hold yet again, only this time we are not setting a new date. Much to our dismay, things have taken one step forward and two back.....Of course it's all part of the game.
Tom is still doing good, but we have a few issues we have to deal with and they are best dealt with here. Great news is that his Magnesium has finally got to the recommended level and he has now gone down from 4 to only 2 sachets of magnesium per day. The other great news is that the skin GvH is looking awesome and so NO MORE CREAMS!!!! (for now anyway). So all steps in the right direction.
This is where I have to add the, BUT unfortunately bit, as always there has to be a but. His Creatinine levels have jumped up from 0.4 to above the recommended level, and are currently 1.3, up from the day before of 1.2, so it's showing a very positive upwards trend. This is the toxicity of his kidneys and we are not sure yet why this has done the sudden jump when all through transplant it has remained very low. So we are keeping our eye on it and trying to encourage Tom to do a 'drinkathon' today to help flush his kidneys out, as tomorrow he is having a blood test to see how it is. It is probably a build up from all the medications he is on, a person can only take so much before it starts to take a toll, but just the fact that it has increased means we have to monitor it and make sure it doesn't get to a dangerous level. Hence one reason why we are staying here for longer, consistent increases like this could potentially become a problem. Lowering the meds is one option but we are stuck between a rock and a hard place, lower the meds.. GvHd may return, don't lower them, toxity problems...These are the times you're glad you are at a good hospital, with a good doctor.
To add to the problems, Tom's WBC has been gradually dropping since they stopped the GCSF on Day 98 (Today is day 123) and all the GvH and CMV meds he is on actually lower the counts too, but now it is at a critical level that he is almost neutrapenic again or at least he will be soon if it continues to drop at the rate it is, which along with his already suppressed immune system will not be a good thing. On Tuesday he was 2.3 and Friday he was 1.9 which is a big enough drop to show concern and they are considering possibly putting him back on GCSF (the cell promoter). We are pretty sure that all of these problems are medication related, and Dr K confirms this as her opinion also, all of his other counts are just GREAT..If there were problems with relapse etc we would not expect all of the other numbers to continue going in the right direction.
So last Tuesday they stopped the CMV medicine as they don't want to drop the GvH meds just yet as he is stable right now and don't want any GvH back. He'll be having a blood test tomorrow to see what the count is now that the CMV med has been dropped. It hadn't made any difference on Friday when he had his test, but hopefully we will see a difference tomorrow. I think it's probably the high levels (1,500mg a day) of cellcept, and Dr K. is not looking to reduce that yet. Otherwise we are going to have to inject, (yes inject) GCSF into Tom twice a week. Tom is adamant that we are going nowhere near him with a needle, I don't think I can inject him, so it's up to Nic to do on this one and she's not too ecstatic either. This is because he no longer has a Hickman Line. Here goes more money, that stuff is very expensive.
Tom has now been up every night for the last two weeks vomitting, but we are really hoping that once his magnesium levels are stable and he no longer needs the powders that this will stop. He is still feeling quite nauseous all the time and his eating has slowed down dramatically, so far his weight has basically leveled off, (but we sneaked him on the scales on Friday when we went in for a blood draw and he had lost a little bit more, but we didn't tell anyone.....LOL). He has done better today with the eating, so hopefully he will just stay stable for now. It can be very tiring for all of us, sleep deprevation is no fun.
So in regards to going home to Orlando. We 'HAD' the moving guys booked for Wednesday and were going to see Joanne for the last time Tuesday and then leave here ourselves Wednesday too, but Joanne really doesn't think Tom is in a position to leave with the new issues we are dealing with so we have decided not to set a date and will just see how we go this week and then take it from there. Although it is now highly disappointing and extremely boring here, we have to go off her recommendations.
We have decided not to tell the kids a specific date as we don't want to let them down again, but secretly we are still hoping that we might be able to get out of here next weekend or early the following week. Like I said, it all depends on his blood tests tomorrow (Sunday) and Tuesday to see if there is any improvement. Perhaps we'll just tell them the night before...ummm..Then again, they probably won't sleep at all that night :) We can actually still go ahead with the GCSF (cell promoter) in Orlando, but at some time he is going to have to come off that and if his counts went back down again it would mean a BIG decision on whether or not to reduce his GvH meds, so again we will be at a crucial stage and would really like Joanne to make that choice. We have told her that we would come up here as often as she needed us to, so we will see what she says. We don't really want to drive up here very few weeks, but we're on a mission here :) ..It's 635 miles and with a few stop offs takes around 10 hours each way.
So that's it for now. Tom still looks great and his hair has actually started to grow back a little bit at the back of his head. He looks a little pale and has dark circles around his eyes, but that's probably due to the disturbed sleep he's now had for the last 2 weeks, as his HB was 11 on Friday which is almost in the 'normal' range, platelets were up to 118, which shows that 'inside' he's doing real well. I wish we could go home as I think it would be a great boost for him, he is desperate to see all his friends and be able to just hang out in his own house and be more normal again, although with the low immune system and low white cell count, even that is going to have to be heavily restricted. He is still very dependent on us, in particular Nic (which is very draining), if he's ever left alone for more than 5 seconds he'll start to shout for something, 'I feel sick' or something, Nic has spent half the nights for the last two weeks sleeping in his bed too, of course this disturbs me also, we just dred going to bed, as we know we're all in for a bad nights sleep, and poor Tom is going to be vomitting away. I'm also being worked hard to keep Tom in anything he feels like drinking or eating (which is little), I'm the official runner and it takes up a lot of time. I think Amy is the only one who is getting some decent sleep as she is tucked away all on her own on the bottom floor and we are all on the 3rd floor.
So the bottom line is we don't know when we will be going home and Joanne can't really give us a date as there are too many unknowns right now. Hopefully after Tuesday we might know a little more, so I will try and keep the site up to date.
Please remember to sign the guestbook as Tom does read these regularly and he always likes to hear from people.
Oh I almost forgot, to make it worse, for some time now Tom has been grinding his teeth, but not just a little, a LOT, he sounds like he's going to snap them right out of his head..We'll give him a little push, or shout him to tell him, then not even 2 seconds later he's doing it again.. Now I can see why sleep deprevation can be used as a torture tool!
May 6th 2002
Just to let you know how things are for us right now. You would think that we would be sitting here twidling our thumbs and waiting for time to pass us by, but in reality it's far from that. Tom is still very dependant and needs a lot doing for him. Life is certainly a lot easier than when we were first dishcharged from the unit on Day 21, but we still seem to be very busy. When I look back to how crazy things were back then I can't believe how we managed to do it. All day clinics (everyday including weekends), 4-5 IV meds morning and evening and creams for the GvH 6 times a day. Nic says it's no wonder she used to fall asleep on the bottom of Tom's bed when he was in clinic having treatment and blood products.
Well Tom is doing great, but life it still hectic. The creams for the GvH only need to be applied twice a day now, but it still takes a while as Tom hates it and has to have 100% completely rubbed in, and it makes him grumpy as he doens't like the feel of them on his skin, espeically the Protopic which he has on just before he goes to sleep at night. Up until a couple of days ago he to have a bath everyday, which Nic has to help with as due to the heart problems he can't be left on his own. However today for the first time he had a shower, but he still wanted Nic in close vicinity to hand him his towels etc. Finally a taste of real life, things he just could not do until the line was taken out. For the first week of having the port installed he could not take a shower still has he had a cannula with tube attached for some blood draws to monitor his magnesium, along with his the meds to be given on Tuesdays. He really enjoyed his first shower, the first in almost a year. Oh and he washed his hair 7 times (well his head with a few sprigs of hair).
He has to have Magnesium 4 times a day, one tablet in the morning and then 4 sachests mixed with soda 3 times a day. He is no longer on ANY IV meds at home, which is great and definately makes life a little easier. He has 19 meds a day split over 3 intervals one of them we have to break up and put in yogurt as he doesn't like taking the gel-capsules. No more dressing changes now he doesn't have a Hickman Line (Yeah!!!) Last week I had to draw blood from his portacath which was more difficult than drawing it from his old Hickman, it seemed there was a big vacuum pulling back and it was hard to draw back. I had to do this so they could test his Magnesium level which are finally, (very slowly) increasing and went from 1.3 on Tuesday to 1.5 Friday, so at least he is holding his own with the oral magnesium which is great. Unfortunately the magnesium sachets make him throw up, and for the last 10 days he has been up every night from 2am-5am feeling nauseaus and then eventually throwing up. Night before Last night we thought we had struck lucky and would finally get a whole nights sleep as he threw up before we went to bed at 11pm, however he still woke up at 6am today and threw up again. Hence we are all tired and are in much need of an undisturbed nights sleep. Luckily, last night was the first night he slept right through without being sick. We are really hoping that his magnesium level will increase so much by Tuesday that they will be able to drop one or two of the sachets and then hopefully Tom won't throw up anymore. This magnesium situation is normal for a transplant patient, and can take some time to recover, it's caused by all of the treatment that he has received.
There was a small concern that it could be GvH of the gut which was causing him to throw up, but we have come to the conclusion that it's the magnesium as when we stopped it, the throwing up stopped and then when we started it again so did the throwing up.
The skin GvH looks fantastic and he only has what looks like faint freckles and dark patches on the bottom of his legs, feet and the back of his hands. The rest of his body is totally clear although his skin doesn't feel totally smooth all over, but this could just be dry skin caused by the creams. Dr K. said that she doubts she will be reducing any of the GvH meds just now and he will probably be on them for 6 months, and she has no plans to reduce the 5mg a day steroids that he is currently on. In a sense this is good news for us, as this means that his meds will basically stay the same for quite some time now which will mean that there shouldn't be too many judgement calls for us to deal with when we are down in Orlando.
Overall Tom is doing great and his energy levels are quite good now. He isn't sore at all from the new port and can now sleep in any position without a problem. But whenever we seem to get rid of one thing another comes along. He is feeling quite nauseous a lot now (due to the Mag), and so we are now having a bit of a battle to get him to eat as his weight has dropped from his high a few weeks ago of 36.6kgs down to his current of 34.8kgs. This is still OK as he is still above the weight when he was first admitted, but we don't really want him to loose anymore. It's not surprising his weight has gone down considering his lower appetite due to his nasuea and also the throwing up. So we are preparing him anything he fanices (all the time) even if he only takes one bite and then leaves it. And we are doing a bit of driving around to his favorite eating places to encourage him to eat. Unfortunately his favorite 'Olive Garden' is about a 30 min drive away, plus sitting in the car eating it and then the drive back here, so the whole process take a couple of hours. It's quite frustrating when he says he wants to go, we get there and he only eats half a breadstick and then doesn't want anymore, but we have to try.
All is looking well for our return home a week from Wednesday, if he continues doing as well as he is, and we have even started to get organized in advance (which is a first for us). (Hope we don't jinx it). We have a trip to clinic on Tuesday where Tom will have the pantanamine (spelling wrong) which is the med he has to inhale in the plastic tent thing which will help keep him pneumonia free. With regards to going home, we have decided there is never going to be a good time to go, Duke is the best place for him, not that Florida won't offer good care. Complications of some sort could appear from now to the end of the year as they taper down the meds, so we have to decide, do we stay until the end of the year, or do we go? Decision... Go, and hope for the best, Tom is stable, if we are not happy when we get to Orlando, then we'll have to pack our bags and come back, not sure how that will work as we'll have lost our apartment, but that's just a technicality that will have to be dealt with.
He will continue to have the lung medicine once a month when we get to Orlando. He was supposed to have IVIG once a month now instead of once a week which he has been having, and therefore have this when we get to Orlando, but as we were still here Dr K. suggested he had it again last week, so not sure if he will be having this again on Tuesday and then the following Tuesday. Hopefully we will only have to go to clinic the two scheduled times and then that will be it for us here until we have to come back up here for his 6 month check up (From transplant date) on July 8th. Tom's birthday is July 10th, so we are actually hoping that we can come up here the week before. Having said that though we never seem to be able to go once a week and there is always something that seems to crop up and we end up back there again. Last week we were there 3 times as there was a bit of a mix-up and they needed his FK506 levels as well as Mag levels on Friday, and I only drawn blood to test the Mag, but we didn't realize this and went into clinic to drop the blood and for them to show us how to take the line out of his port, but they couldn't do it as we had to re-take the FK506 level the following day, so this meant we had to go back again Saturday with the blood sample and then to take his line out. The line came out pretty easily and we were all pleasantly surprised (It was a tense moment, I think everybody stopped breathing for a second as the large needle came out) With Tom's previous line experience he was a little worried about this. Anyway, hopefully we will get away with just the two planned clinic visits. I just counted his scars (war wounds) and he currently has 7. One under his arm where his old line is (which is the biggest), and the rest are scattered around the bottom of his neck and chest including the new 1 inch slit where the port was added.
We are going to put together a new link on the site which will give everyone who wants to visit us some guidelines to follow. We are still very strict about things and will have to be even stricter when we come home to Orlando as he will be getting more visitors and of course open to more infections which is potentially a serious risk for Tom's, and will be for the rest of the year. We are going to do everything we can to reduce his chances of catching anything, certain illnesses which a normal person can handle can prove fatal to someone like Tom. So before you come visit us, please check out and abide by our guidelines.
Just out of interest, these are the results of the HLA matches that Tom has around the World, of course we didn't need them with us having Amy our perfect match :)
37 HLA MATCHES
Germany:9
UK:6
US:5
Canada:4
Finland:3
Italy:3
Australia 3
Norway:1
Wales:1
Russia:1
France:1
Message to our friend Beth: On a final note, 'The Kassars' would like to say how saddened we here to about our friend Beth's relapse, and offer all of our support to both Beth and her family. We want to wish her the very best of luck with her induction and BMT which will take place in our old hospital (Royal Manchester Childrens Hospital). We will be thinking of her all the time and look forward to the time that both Beth and Tom can stroll around Disney one warm summers evening (hopefully not TOO warm!) and talk about this as a distant memory! Beth.. We will send you some 'Tom Da Bomb' energy :) .. Although I'm not sure 'Beth Da Bomb' sounds right..don't worry we'll dream up a name for you hahaha.. Now get those 'teachers' to give you a wireless PC laptop we'll be online whenever you want to chat!...Well Amy will for sure..Stay strong and positive, and you'll be just fine, in fact, as per my little tradition now, I've tried to theme the music to the occassion, hey it's not easy to find a good MIDI file!..So.. put your mind to it.. get in..get well... get out.. See you in Orlando soon..and no moaning about thumb pricks anymore! LOL (yeah..yeah..says me the one who used emla (magic) cream when his blood had to be drawn) ;-)
April 30th 2002
I'll start with the good news, then move right onto the bad.
Good news: Counts continue to increase, Toms platelets have hit triple digits! Todays count 101. White cell count is down to 2.6, but that's ok it's his cellcept is doing that, the important thing is that the neutrophils are looking good. His GvHD is continually improving. Overall he's in great shape, now let me move on to the bad news
Bad News number 1: Last night he threw one of his heart things, very disappointing, we were hoping the removal of the hickman and installation of the port would have stopped it, it seemed okay since the port install..so much for that. Of course that now concerns us for a few reasons, is there something wrong with the heart? Plus we are concerned about driving out of range of a hospital (especially the drive to Orlando!).
Bad News number 2: With regards to that drive to Orlando, there isn't one -- We had a big decision to make today...'SHOULD WE STAY.. OR SHOULD WE GO?' ..I will get to the point, it's was a STAY, much to the huge disappointment of the kids, who want my blood right now! Never seen Amy and Tom be so friendly with each other! Ganging up on us. Thanks to all my Acor List mates for all of their input, and info on their experiences, it seemed like everybody agreed... Go with the gut feeling, which was, a stay, Dr K also thought if we could stay, we should stay, aside from being bored out of our skulls in Durham, in reality we could stay. It was the logical thing to do, the next month will be another hurdle jumped and I think that if we can get through this month and reduce some of the meds that the situation will be a lot more stable. (As they attempt to stop his steroids this month)
If we stay at Duke we have access to their 7 day a week clinic, plus the special 'bop' room on the BMT unit which is open 24 hours a day. All the doctors and nurses know him extremely well.. Vs.. Going to FL to a hospital that does not have all of this specialized setup, with nurses that won't be as experienced, for example as he is not neutropenic he may not be put in a filtered isolation room, where as Duke is set up to do this..No contest. We did consider the long weekend, leaving Friday come back Monday, but figured that the risk (especially now that the heart issue turned up again) is just too high, he's been up at 1am and 2am over the last two days vomiting (we think it's the magnesium which has been increased to 4 doses per day as it's still dropping). It was just not worth it, if we end up in a hospital we might end up in an E.R room...BAD!
We're all very disappointing we all had our own reasons to get back home, but there is no choice...I have a feeling the next 2 weeks will go real slow. Oh.. We've agreed, 2 weeks, then we will reassess the situation, with the possibility of going home. So, there you go.. Decision made. Feel free to sign Toms guest book to let Amy and Tom know it was the right thing to do, somehow they don't think so :)
April 27th 2002
Port still ok.....unfortunately we had to use it sooner than expected and Tom was not happy (and that's putting it politely). His magnesium level dropped from 1.7 on Tuesday to .80 (cut off point 1.5) on Friday so we had to go into clinic and have a 'finger prick' to get a count which showed his level had dropped and so we put the EMLA (numbing cream) on for an hour and went back to clinic. They had to acces his line and it was more indepth than we thought. Tom was upset because he was still so tender and sore, and they have to push in quite firmly to get the needle to pierce through the rubber part of the port under his skin which Tom said felt like having a fork stabbed into his chest....The very surface of his skin was numb, but the whole area around the port and obviously underneath where it has been sutured into his muscle were still very sore from surgery 2 days before, so he now has BIG regrets about having this port in and totally blames us for making him have it done. If it weren't for the fact that he was having so many problems with the fibrous clots in his line, his heart issues and also the blue line kept unclamping, then we would be having BIG regrets now about persuading him to go through with it. So he decided to keep the connecting tube which was the painful part to attach for a few days (they can stay in there for 7 days) just in case he needs any more infusions, so he won't have to go through the whole 'piercing' process again, until hopefully he is less sore and better healed. So after all the great things we have been telling him about how wonderful it will be without his lines, he now has another one which (to add to the whole thing) actually hurts too.
We were hoping that his magnesium level would stay stable with the powder/tablets, but it's not. We have bought him some chocolate bars and powdered drinks that contain 25-35% of the recommended allowance and hope that this will help maintain his levels some. It is really hard to eat the right 'regular' foods to keep his levels up, as it's not found in high quantities in any foods. His body just isn't absorbing it right now, but in time this will settle down and he should be OK, it is quite normal at this stage of post-transplant to be like this. Magnesium is used in building bones, manufacturing proteins, releasing energy from muscle storage, and regulating body temperature so it is really important to keep his levels up.
As you know, we were supposed to be going home today, but we are actually glad that we left it until Wednesday with these magnesium problems, Tom is still sore from surgery and finds it hard to wear his seatbelt, and we are nowhere near organised to leave and haven't even started packing yet. Plus Joanne gets to see Tom again before we leave.
Last counts were done on Tuesday 23rd and were great.
Platelets 88....(normal range 150-400)
HB 10.6.........(noraml range 11.4-15.5)
RBC 3.23........(normal range 3.80-5.50)
WBC 3.1.........(normal range 3.8-12.7)
All his other lab tests were perfect and it was great to get the blood test sheet back with no stars on anything except the above, which are so close to being in the right range too. Sodium, Potassium, Chloride, Carbon Dioxide, Urea Nitrogen, Creatinine, Glucose......ALL PERFECT...Calcium, Phospherus, Protein, Albumin, Billirubin, Alkaline, Asparate and Alanine.......ALL absolutely perfect, which shows his body is doing great and holding it's own. His Segmented neutraphils are 67% and his Band neutraphils are 3% (perfect)...these have dropped from the higher ranges we are used to seeing because he has stopped the GCSF which promoted the growth of these. He is now in a more normal range.
Appetite slowed down a lot, but he is still maintaining his weight and is currently 35.5kgs
78lbs or 5st 8lbs, which is still great. He has lost the roundness in his face and looks more like the normal Tom now. His steroids have been reduced and he is only on 5mg which is just covering what his body would naturally make, as once you are on steroids your body doesn't make any on its own. So it has to be weaned down so his body will slowly start to make it's own. They will probably go to 5mg every other day next and then reduce it slowly until his levels are normal and he is making his own. The steroids he is on are not used for fighting the GvH anymore, just maintaining what he isn't making.
Tom hasn't even had so much as a heart flutter since his line was taken out and the new port put in, which is great, he used to have 5-10 flutters per day. He said his whole chest feels more open like he has more room. So hopefully once this problem with the magnesium is sorted he will be happier with the port.
Skin GvH is looking great.......The best we have ever seen it. He has a very faded rash and almost no pink anymore, it just looks like faded freckles on one arm and his legs, but his back, stomach, face, head and 1 arm are totally clear. So hopefully we will be able to reduce the amount of times that the creams are used which will make Tom happier. The next obstacle we have is to reduce the CellCept and FK506 he is on which is combatting the GvH, and hope that it doesn't start to flare up again. This will be done gradually, so we hope that it runs smoothly. The GvH is Amy's T Cells actually attacking Tom's (foreign) body as it recognises Tom as a foreign body, so we are very lucky that he only got it on his skin and it dind't attack anywhere else in his body. There is still a possibility that this can happen as we reduce the drugs he is on to stop this, but we will cross that bridge when we come to it.
April 24th 2002
Port still ok.....unfortunately we had to use it sooner than expected and Tom was not happy (and that's putting it politely). His magnesium level dropped from 1.7 on Tuesday to .80 (cut off point 1.5) on Friday so we had to go into clinic and have a 'finger prick' to get a count which showed his level had dropped and so we put the EMLA (numbing cream) on for an hour and went back to clinic. They had to acces his line and it was more indepth than we thought. Tom was upset because he was still so tender and sore, and they have to push in quite firmly to get the needle to pierce through the rubber part of the port under his skin which Tom said felt like having a fork stabbed into his chest....The very surface of his skin was numb, but the whole area around the port and obviously underneath where it has been sutured into his muscle were still very sore from surgery 2 days before, so he now has BIG regrets about having this port in and totally blames us for making him have it done. If it weren't for the fact that he was having so many problems with the fibrous clots in his line, his heart issues and also the blue line kept unclamping, then we would be having BIG regrets now about persuading him to go through with it. So he decided to keep the connecting tube which was the painful part to attach for a few days (they can stay in there for 7 days) just in case he needs any more infusions, so he won't have to go through the whole 'piercing' process again, until hopefully he is less sore and better healed. So after all the great things we have been telling him about how wonderful it will be without his lines, he now has another one which (to add to the whole thing) actually hurts too.
We were hoping that his magnesium level would stay stable with the powder/tablets, but it's not. We have bought him some chocolate bars and powdered drinks that contain 25-35% of the recommended allowance and hope that this will help maintain his levels some. It is really hard to eat the right 'regular' foods to keep his levels up, as it's not found in high quantities in any foods. His body just isn't absorbing it right now, but in time this will settle down and he should be OK, it is quite normal at this stage of post-transplant to be like this. Magnesium is used in building bones, manufacturing proteins, releasing energy from muscle storage, and regulating body temperature so it is really important to keep his levels up.
As you know, we were supposed to be going home today, but we are actually glad that we left it until Wednesday with these magnesium problems, Tom is still sore from surgery and finds it hard to wear his seatbelt, and we are nowhere near organised to leave and haven't even started packing yet. Plus Joanne gets to see Tom again before we leave.
Last counts were done on Tuesday 23rd and were great.
Platelets 88....(normal range 150-400)
HB 10.6.........(noraml range 11.4-15.5)
RBC 3.23........(normal range 3.80-5.50)
WBC 3.1.........(normal range 3.8-12.7)
All his other lab tests were perfect and it was great to get the blood test sheet back with no stars on anything except the above, which are so close to being in the right range too. Sodium, Potassium, Chloride, Carbon Dioxide, Urea Nitrogen, Creatinine, Glucose......ALL PERFECT...Calcium, Phospherus, Protein, Albumin, Billirubin, Alkaline, Asparate and Alanine.......ALL absolutely perfect, which shows his body is doing great and holding it's own. His Segmented neutraphils are 67% and his Band neutraphils are 3% (perfect)...these have dropped from the higher ranges we are used to seeing because he has stopped the GCSF which promoted the growth of these. He is now in a more normal range.
Appetite slowed down a lot, but he is still maintaining his weight and is currently 35.5kgs
78lbs or 5st 8lbs, which is still great. He has lost the roundness in his face and looks more like the normal Tom now. His steroids have been reduced and he is only on 5mg which is just covering what his body would naturally make, as once you are on steroids your body doesn't make any on its own. So it has to be weaned down so his body will slowly start to make it's own. They will probably go to 5mg every other day next and then reduce it slowly until his levels are normal and he is making his own. The steroids he is on are not used for fighting the GvH anymore, just maintaining what he isn't making.
Tom hasn't even had so much as a heart flutter since his line was taken out and the new port put in, which is great, he used to have 5-10 flutters per day. He said his whole chest feels more open like he has more room. So hopefully once this problem with the magnesium is sorted he will be happier with the port.
Skin GvH is looking great.......The best we have ever seen it. He has a very faded rash and almost no pink anymore, it just looks like faded freckles on one arm and his legs, but his back, stomach, face, head and 1 arm are totally clear. So hopefully we will be able to reduce the amount of times that the creams are used which will make Tom happier. The next obstacle we have is to reduce the CellCept and FK506 he is on which is combatting the GvH, and hope that it doesn't start to flare up again. This will be done gradually, so we hope that it runs smoothly. The GvH is Amy's T Cells actually attacking Tom's (foreign) body as it recognises Tom as a foreign body, so we are very lucky that he only got it on his skin and it dind't attack anywhere else in his body. There is still a possibility that this can happen as we reduce the drugs he is on to stop this, but we will cross that bridge when we come to it.
Btw: With the line being left in the port, it looks almost like a Hickman line, so I was able to draw blood and flush it like a regular line this morning so that Tom did not have to show his face at the hospital...same again tomorrow.
April 22nd 2002
Tom kind of made a decision, he's going to have his line removed and have a port installed. He wanted us to make the decision to do it, so with a few exchanges of email with Dr.K. it was set up, even though he never actually said, yes do it. He wants it but he's too scared to commit after the last experience which was real rough due to that badly installed line that from the UK.
We have a pre-op meeting 9:15am Tuesday, surgery will be on Wednesday. I don't think this will delay our going home to Orlano. I think we're going to drive down Saturday morning instead of Sunday. There's no doubt Tom is concerned, and I don't blame him, these ports are not small and it's a fair size cut to install it, he's also upset about getting more scars as he has several now, two in the neck, one large one near his arm where the old line was, and one where the current line is, and now he's going to get more.
Once the line is out we're going to have to use real needles to access it, we will numb the skin using cream and then inject. I'm hoping we don't have to administer any more IV's at home as I'd struggle to inject him, it took a little while to get used to using the Hickman! He is still on IV magnesium (the tablets upset his stomach), so I'm not sure what the plan is right now, we'll figure all this out tomorrow when we meet with Dr K. He's doing very well, full of energy at the moment, especially since he got the nurf guns!
April 19th 2002
I am the bearer of good news. We got the chimerism tests which tells us the percentage of donor cells and whether any of the leukemia is potentially returning...And the results were... drum roll please.....wait for it....100% donor! YEAH!!!
April 18th 2002 (Day 100 From Transplant!)
Not long ago we were umming and arrr'ing.. What to do...Where to go. Looks like we made the right choice. Stage 1 over, time to count down the days to going home.. little over one week. We're going to have a little party later today, Herb and his family will pop over, and so will 'The Jordans'.. Families with transplant kids that we have become friends with whilst here. We have to say a BIG thank you to all the caring nurses and doctors at Duke, especially Toms primary doctor, Dr. Joanne Kurtzberg who has performed an outstanding job on Tom. Amy would like to thank Shannon (nurse) as she says she is 'cool' :)
Health Update: Tom has to decide today whether he should have a port or not, as described on April 16th. So far his decision is a big NO, how long we can delay before the port is to put be in, I don't know. Dr. K tends to think his line may not last more than a month. He's still not eating a LOT, and feels a little sickly at time, but overall, pretty good. Went for a good walk last night, he's doing great!
April 16th 2002 (Day 98 From Transplant, 2 days to the magic 100)
Today was the big day, the 100 day test (Although we are actually at day 98). I'll start with the good news, if everything goes to plan and nothing jumps out at us we can go home (Orlando) in 12 days, a week on Sunday. He'll have one more meeting with Dr K. next Tuesday and then we can leave a few days later, it's feasible we could leave on Thursday, but we'll probably wait until the weekend, leaving Sunday.
The test went well, his platelets are up (56 now) which is a very good indicator that the GVHD is actually under control, allowing the prednisone steroid to be reduced from 10mg a day to 7.5mg a day. His lungs showed more or less the same capacity and function as he had before transplant. They took a large amount of blood for testing, I think it was well over 100cc's to run various test including FISH, which will tell us the split on donor cells, last test showed 100% female, this is good as it means he does not have to have the bone marrow tests. He also had heart tests, this was an extensive echo that lasted for a good 30 minutes. His blood will be tested to see how his immune system is functioning but results from this will not be known for around 1 month, the FISH results won't be with us until next week. Oh he also had a chest X-ray.
His magnesium is holding well still so it looks like he is absorbing it well on his own still therefore the IV has been reduced (his only IV at home now) and 2 magnesium tablets have been added to his extensive list of oral med's. His white blood cell count was good at 4.5 especially since he has not had the GCSF (cell stimulant drug) for over a week now.
Where this GVHD is going to go we don't know, there is a chance still that is is chronic, which means it could bug him for the rest of his life, settling down and coming back requiring meds and creams, the skin on his hands and feet are leathery which does suggest chronic especially with it being so long from transplant now. As I have explained before the GVHD is a pain (and an expensive thing to deal with) but we do have the benefit of GVL also, as Amy's cells attack his skin, it will also knock out any remaining leukemic cells, however enough is enough and we'd really like to see the back of it now.
We do consider ourselves real lucky that it stayed in his skin, GVHD likes to move into the gut and that can be a very serious, and often fatal complication. However I did learn today that as it is potentially chronic that as they bring down the medications that there is a risk of GVHD of the liver, so the blood will be watched carefully, what the full implications of GVHD moving in the liver are.. at this point I don't know, but from what I've seen with others, I'm thinking it would be REAL bad. For those of you not familiar with the transplant world, GVHD is NOT just a rash, it's Amy's cells actually attacking Tom thinking Tom is a foreign body, if it gets out of control, you can have a VERY serious problem on your hands.
Dr K. would like to see the removal of his hickman line before we go back to Orlando, he has 2 days to make up his mind so that they have time to schedule the surgery, as they still need access to his blood, they want to install a port. Again for those of you not in the know, a port sits under his skin, his skin can be numbed up and then injected into, it's actually quite a large unit (in my opinion) looking a little like the end of a stethoscope. They would open up one of the old scars in his neck so they can thread the tube down near the collar bone, and put a 1.5 inch slit in his chest where they will insert it and stitch him up.. nice eh? It will have advantages.. Less chance of an infection that the Hickman line, no daily flushing and regular cap changing, plus he can go swimming and take a shower etc, the simple things in life that most people take for granted (like we did once). His cousin Jack is coming over for the Summer and he really wants to be able to go into the pool with him, but he does not want the surgery, I can't blame him. The problem is that the Hickman line is possibly on it's way out according to Dr.K. we have a problem with fibrin in the line, a clotting agent in his blood, and it's already been flushed once with a chemical to try and clean it out, but it did not seem to work well.. It functions ok at the moment but apparently it's a sign of trouble on the way. If he does not have the port now, he could opt to have it when we return to the hospital for a check up, which will only be one month from now. Yep, we only get 4 weeks in Orlando then return for 2-3 days.
Toms tutor came to the house the other day as we are only at hospital on Tuesdays now, but he was feeling sick so nothing actually happened although Amy managed to get some work done.
Tom pulled off one of his code blue heart things on Friday night, we had to rush him off to hospital, just as we arrived he took a big breath and actually managed to stop it. We went in anyway and got his blood pressure checked. Dr. Driscol had ordered a 12 lead EKG and chest X-ray, plus full blood work. Luckily Dr.K. was on the unit so she cancelled the X-ray and blood work, as I pointed out to her that Tom didn't need any of that, we all know he has a history of this, I'm not sure why he ordered so many tests, but I wasn't about to let Tom have an X-ray for it. The creams are still going on 4 times a day, I know it's driving Tom and Nic crazy, one of them in particular (Protopic) is real greasy, he hates it so ends up lying in bed for a long time whilst it drys, these creams are going to have to be used for at least the next 2 months, plus he now has to use a moisturizer as his skin is drying out. He also has a little cut on his finger from the dry, cracking skin so he's getting bactaban antibiotic cream on that 3 times a day.. boy this kid is high maintenance.
I almost forgot to mention we had a visitor 'Grandma Jean', of course we could do anything whilst she was here, but Tom enjoyed the extra company and a new face around.. who's going to empty the dishwasher and do the ironing now.. I'm not sure as she left for the UK today, although left us a couple of days ago to go via Orlando for the direct flight. On a light note, the it's been getting hotter and hotter each day here, when we came out of the hospital today the car was showing an outside temp of 94 degrees and it felt like it, when we got here it looked like winter with all the bare trees and dark patchy grass, now it's greensville... everything is green it looks so different, all the trees and flowers are out.
Although Toms in a much better position now, he has a long road ahead of him and recovery will be slow but steady, for instance he still gets rather tired later in the day and may take a nap for an hour or so late on. The image of actually letting him just go and play some sports with friends for instance seems to far away still. It looks like we are over a huge obstacle now, but it's just one of a few, this is going to go on until the end of the year before we see half a chance of a normal life. When I get a minute I'll try and put up a page that clarifies Toms situation.
April 9th 2002 (Day 91 From Transplant, 9 days to the magic 100)
Things are moving in the right direction as usual with more good news. The platelets are up again, todays count 45, up from 35 two days ago! A few other good new items today, the GCSF (used to stimulate cell growth) has been stopped, so there goes one IV pump each night. The FK-506 (to help control the GVHD of his skin) has been reduced as the count was high - His body is starting to absorb it much better than before, this will also help him absorb his magnesium levels as FK-506 knocks the magnesium down, the magnesium has also been lowered! The magnesium is the only IV that he has at home now (over 2 hours at night), if all goes to plan with the reduced FK-506 and his continued great recovery, the magnesium will also come to an end, so he will have absolutely no IV's at home! Just a lot of (expensive) tablets. There is no doubt that his body has started to absorb the magnesium.
He was going to hospital 3 times a week for ABLC (Amphataracin - Antibodies made from donated blood - so I believe) which helps him fight infections should he come across anything, this has been stopped, and replaced with Itraconozole at a mere $700.00 a month, the good news is that it frees him from hospital! Today Dr.K. told him that he could have a week off! I just have to take blood every few days to keep an eye on things, hospital will be Tuesdays only, where he will meet Dr K....Now that's real progress!!!! His GHVD of the skin is still a bit of an issue so they decided to increase the cellcept from 500mg tablets 2 times a day to 3 times a day, the prednisone of 20mg will stay the same. Here's a quick run down of the current blood levels, things in this department are looking REAL GOOD:
White Blood Count 14.4 (Normal range 3.8 - 12.7)
Platelets 46 (NOrmal range 150-400)
HB 10.8 (was 11.5, but it's OK to fluctuate)(Normal range 11.4 - 15.5)
Magnesium normal range
Potassium normal range
Protein normal range
Segmented Neutraphils 67%
Band Neutraphils 24%
With regards to going home on the 100 days, unfortunately, it's not going to happen, we are looking at around 1 to 2 weeks AFTER the 100 days, due to the GVHD situation, Dr K. would prefer to keep her eye on it, although she will manage Toms situation even when we move down to Orlando she wants him right there so she can see him in the flesh, it's disappointing but we're on the home run now and we can deal with it what choice do we have? :) By that point he'll also be off all the IV pumps, well that's the plan anyway. It's a matter of opinion, I think Nicola would agree with me that the GVHD is getting better, only a little but better is better, it is certainly no worse. So this takes us the late part of April. Dr.K does not want to leave it 3 months before seeing him again, so 1 month later we will drive from Orlando back up to Durham for a check up, not the end of the world, the lease on the apartment won't be up, so we'll keep the place here and it'll give us somewhere clean to stay as we'll be here 2-3 days, a hotel would not be too appealing, just too many germs.
Tom even said he would come back every 2 weeks just as long as he could go back home, there's no doubt he is getting real excited about getting back to Orlando, it's been almost 1 year now since this journey began. Tom looked at someone with a Port and is interested in having one. This will enable him to swim and shower, but they won't do it until he is off the Magnesium pumps so it might happen when we come back up here at the end of May. It will also decrease the chances of infection and won't need any looking after, no dressing changes (which Nic is currently doing daily becuaese the creams make his skin oily and his dressings don't stick), no daily line flushing and no cap changes, it'll be goodbye Hickman line...He'll even be able to go on a boat, so we could have a reasonably good Summer, as long as we stay out of the Florida sun...ummmm..
Feel free to sign the guestbook, signings are slowing down and he does like to read them. Thanks to everybody that has supported us through this, as you all know, Tom has developed a large following that spans just about every corner of the globe, the support really helps. Oh, I have to finish off with a thank you to the Kittlesons for the...I guess surfer dude? hat from Ron Jons surf shop, with built in 'surfer dude' hair... we had a real good laugh with that :) .. We'll try to get around to chopping up some photo's and uploading in the next day or so, there just never seems to be a spare minute still and those photo's take forever to sort and prepare for the 'net.
April 7th 2002 (Day 89 From Transplant, 11 days to the magic 100)
Sorry for the slow updates. I've been working 24/7 to keep up with work, the days just fly by. Tom is doing very well, a blood test the other day confirmed our thoughts... His hemoglobin was up, it was like he'd had a new set of super high energy batteries! His was just full of himself.. demonstrating to me how he could run upstairs, never stopped talking, he was really buzzing, a day or so later the blood test revealed a hemoglobin of around 11.4! A couple of days later he was tested again, and it was 11.5...GREAT news
The good news also continued, the platelets which were hoovering around 19-22 have also started to climb up, the last test showed 35.. I've warned him.. all those days of giving us hassle...once he reaches 100 he's in for it! :) White cell counts are also looking good..In fact almost all of his tests come back within the correct range...recovery is going well.
His weight is good, eating being no problem. He currently weighs in at 36.6kgs, which is 80.5lbs, or 5 stone 13lbs, the steroids make him eat more than he probably should, but it's temporary, and we're just happy to see him eat which is much better than the alternative of not eating. We're very close to the 100 days but it looks like we still be stopping longer, Dr. K. wants to get him off all of his IV medication that we give him at home and at the hospital 3 times a week and on to tablets, so we may be stuck here a week or two longer. He does however have a 100 day test scheduled for Tuesday April 16th which will actually be 98 days. He will not have a bone marrow test as they can use a FISH test (Results to be obtain 19th April) to find out what percentage of his blood is male and female, we'll be looking for 100% female, we don't want to see any of his blood again. When he has the test they will also study the effectiveness of his immune system but the results will take up to 6 weeks to get back. We know he must have some sort of active immune system or he would not have the GVHD of the skin. They will also run tests on his blood, photograph him, X-Ray him, Echocardiogram and Pulminary Function Test (where they put you in an enclosed cubical and have you blow into tubes real fast, many times etc)
Talking of the GVHD, it's been up and down, unfortunately it's a little worse today so we're not sure whether the steroids are going to go back up again...Will it delay down our going home? We don't know yet, it may be chronic and could go on for many years, in that case we'd leave on schedule and handle it down in Florida with the Disney Memorial Cancer Hospital.
A little overview of some of the drugs: Currently taking Magnesium via IV, 2 hours a night, hopefully will be switching to 3 tablets a day soon (tablets are not quite as effective). Some of his other drugs cause him to not absorb magnesium correctly so he has to take this supplement. FK506 will be reduced (this is used to slow down his GVHD of the skin), but this might take a while. It has already been reduced from 4ml to 3ml twice a day as his body is now absorbing it and he doesn't need as much. Cellcept (also for GVHD) they have to gradually decrease and he may be on that for about a year from transplant. Cytagam (To keep the CMV negative) he will still have to go to the hospital (in Orlando) for on a weekly basis for another 3 months and then hopefully after that it will be able to go to every other week for the 3 months after that until he is immune system is fully operational.Ganciclovir IV has been stopped now, this is now a tablet, and an expensive one at that! $800.00 for a months supply! He may use it for 3 months
The heart tablets that he is taking to try to curve those tachycardia 'code blues' will be taken for a while longer and reviewed as we go along. At the 100 day mark the ABLC (IV given 3 times a week at the hospital to help him combat any illness like a cold that he may catch from somebody) should be switched to Diflucan (oral), but this will be assessed at the time.
For those that have been asking, once we leave Duke he will travel back every 3 months for the first year for check ups, so we're back up at Duke in June, September, and January. Once we get back to Orlando we'll be visiting the hospital there once a week (that's the plan anyway). The doctors are very pleased with his progress.. It's only a matter of time now before we get a good chunk of our life back. Oh, on a final note, chances of Tom going back to school this year are slim to none, the GVHD treatment is still supressing his immune system so it's going to take longer for him to be in a position to be amongst all those snotty nosed kids :)
March 27th 2002 (Day 78 From Transplant, 22 days to the magic 100)
I'm not going to make any excuses for the late update.. Well okay, I'm busy as heck with work, that's the best I can offer.
GVHD of the skin is getting much, much better a huge improvement, his head and body are clear, his arms are less than 50%, and about the same on the legs, but it's going for sure. He met Dr.K today and although she can't make any promises, if he continues the way he's going, we'll be ready to go home after the 100 days, I'm not sure if it will be right on the 100 days, but it will be real close. Before we leave he'll have to have a lot of tests, he won't have to have a bone marrow asparate as he has female blood, so it's a FISH test (can't remember what it stands for) which will tell the percentage of female to male cells, last test showed him at 100% female..donor...Amy.
Platelets are hovering around 19-20, we were hoping they would go up soon, but they just stick where they are, GVHD keeps them down, I'm not sure if his current med's are also causing it. It's over 5 weeks now since he has needed platelets. The meds are slowly being reduced, he alternates eacb day with 3 pumps one day and then 2 pumps the next day. Steroids were reduced today from 30mg of Prednisone to 20mg (2 tablets, one morning, one night), this has been weaned down from 80mg. GCSF is also down from 150mg to 100mg so that's just 1 infusion every other day.
His creams are down to 4 times a day rather then 6, which is a help as it's very time consuming to cover his whole body, and now he only has 2 creams rather than 3, I wish he was off the $130.00 a tube stuff which only last 3 days tops! It takes a while each time to do cover him and then he just lies in his room for a good half hour whilst it soaks in and he dries off.
He is doing a lot better with the concentration and patience and manages to play for several hours on his GT3 game, he loves to bake, and he also manages to do his homework. Both Amy and Tom are doing great with their school work. We were hoping that he would be able to go back to school in August, but the GvH meds have reduced the recovery of his immune system and so Dr.K thinks it will be more like January before he can go back.
Amy and I were given some tickets to the 'Stars on Ice' show, which featured all the famous ice skaters including Tara Lipinksi. We also got back stage passes and was able to meet her in person. I got a photo of Amy with her, Nic will go through those and add them soon. A special thank you to Kasey and Don Davage for giving those to us.
Just a thank you to everyone for sending the packages, gifts and cards for Tom and Amy. It really cheers him up when the mail man makes a stop here.
Nadia and Cliff made a visit up here from Orlando last weekend and brought Amy back up from her short trip to Orlando. Tom enjoyed playing the PS2 with Cliff and liked the game that they bought him.
He is still eating like a horse and we are trying hard to keep up with his appetite. His weight on Tuesday was 35.9kgs which is around 79lbs or 5st 9lbs (for our English fans). This is great considering he was as low as 31kgs just before we left the UK to come over here last December. Dr.K has told us that we shouldn't restrict his eating as he will probably loose weight, and his appetite will reduce dramatically when he is completely off the steroids.
They are going to start to reduce his GvH meds once they are sure it is under control, however this will take a long time and he will probably be on some sort of reduced dose meds for the GvH for about 6 months. So we have to hope that when they start to bring them down the GvH won't flare up again. They have talked about putting a port under his skin but that's more slicing and dicing plus you have to inject through the skin to get to it (we could use cream to numb if first), he's not happy about that. The advantage is that it has less risk of infection, plus you can live more of a normal life when it comes to water, take a shower, even go swimmming! Looks like he will stick with the Hickman line, with the current drugs he is on, there is a chance that it could be in for the rest of the year, so there goes his swimming days. It looks like it won't be until Jan next year when all the med's will be down to nothing or hopefully stopped, and the hickman line removed, this sure is a long, long haul!
Other than that everything is running smoothly and we are just counting the days, hours and minutes down until we get out of here.
ht 35.3kgs on Saturday almost 78lbs. 5st 8lbs to UK friends. Should slow down now his steroids are being reduced.
March 15th 2002 (Day 66 From Transplant, 34 days to the magic 100)
My apologies as usual for the lack of updates, I've been real busy and days go so fast!
Things have been a little uneventful as far as our lives go. His platelets are low, we were hoping they were going to be right up there by now, but they have been hovering around the low 20's, and slipping down to 16's - 18's. We're told the GVHD of the skin is not helping at all and is the main cause, they won't transfuse him though which is fine, we want his body to wake up and make it's own, this Sunday will be 4 weeks since he had platelets.
The GVHD won't go away, it's not getting any worse, but as some goes, more will come up, if anything it is a little better, but not much. Dr K. has suggested a drug called Zenapax which is normally used in organ transplants, but for now she wants to hold off and see how he goes, this GHVD may jeopardize our chances of getting out of Durham on 100 days. Here's the cool part, the Zenapax is expensive, real expensive.... $5,000 per dose, and he would need at least 10 doses, that's $50,000 for a course! Well .. you can't take it with you! I have confidence that if Dr.K decides that he needs it, then he needs it, she is very sympathetic to the fact that we are self pay and at the same time would also not hold back treatment on Tom if he needs it. We do have a new cream to add into the mix plus the cellcept will take a little longer to show it's effect, hopefully we don't have to go down this path. It kind of reminds me of that old movie Johnny Dangerous, when they doctor keeps coming to the guy and telling him his mother needs a new heart... then when he gets the money together for that, she needs a new kidney and on and on it goes. There is a chance that this may be chronic GVHD and could go on for many years! By the way the GVHD is apparently grade 3, which is a manageable one at this point.
They did say Tom might be able to have his line removed at 100 days, and a port put under his skin as he will still have to have injections, we could numb the skin up first, Tom does not like the idea of that and he discussed it with Dr K. and she agreed he could keep the hickman line in, the advantage of the port is that there is less chance of infection, rememeber his GVHD medications are immunosuppressants so they lower his ability to fight of infections is still compromised, the other benefit is that with the port is that he will be able to go swimming when we get back to Orlando.
The only other problem that his had was that when we were drawing back on his lines there was a 'gunk' coming back so we had to change the caps each time, Nic mentioned this to the nurses at clinic and they suggested it could be fat deposits, cholesterol or dead cells. I mentioned it in email to Dr K., she was not aware of it and felt it would be a clotting agent so had his lines flushed with TPA, things seem ok so far.
That's about it, we will keep watching the clock.
March 6th 2002 (Day 57 From Transplant, 43 days to the magic 100)
It's going well. No problems. All the counts look good. They have started to reduce his steroids, so I'm hoping the GVHD won't start to attack again. He still has the GVHD and is still using up lots of cream, it's not getting any worse, it's certainly under control, whether it's better or not is questionable, it does itch quite a lot at night. He is on a new medication called Cellcept, which will replace the steroids, but it can take a couple of weeks to become truely effective. Platelets are holding steady in the mid 20's, which of course is low (norm range 150-400), but acceptable for him to go without transfusions, a lot of the medications he is currently taking are holding it lower than it should be.
The Gancyclovir should be stopping fairly soon (I think).. This was the one to treat the CMV which is now negative, the GCSF which inflates the white cell numbers has been reduced by half, so we should see his white cell count drop a little now, which is fine. He had another one of those 'lung' medications the other day, where he has to inhale some medicine mixed with oxygen, this gets into his lungs and helps to protect him against the risk of Pneumonia. He also managed to throw another heart issue the other day, that was Sunday, we ended up at the hospital for a few hours (Bad timing we had visitors, his cousin David, Uncle David and Auntie Denise had driven up from Orlando, so they got to take a look at the hospital whilst visiting). This time he did not have any severe breathing problems, or oxygen level problems, although BP was low, heart rate was in the 200's. They managed to handle the situation in clinic without a crash team, giving him another injection to slow down the heart. Btw: I forgot to mention, until the line comes out, to help curve these problems he takes heart tablets, Dr Kurtzberg is convinced that the line is causing the problems, and from his history I would also agree (Dr. Mark's official opinion LOL). As the medications have been reduced and he is no longer platelet dependant the hospital hours are now reduced which is great, Tuesday, Thursday and Saturday are hospital days, Tuesday being an all day job, Thursday and Saturday should be around 3+ hours.
He has also started to make his own hemoglobin, his count on Tuesday was up from the previous reading of 9.4 (it had been moving up an down by 0.1 or so either direction) was now up to 10.2, the normal range being 11.4-15.5, presuming that continues, the need for a red blood transfusion will also be removed...YEAH!!! No more blood products.
Toms eating VERY well, we have been out a few nights now to some of his favorite restaurants, although he does not go in there due to infection risks, I go in, grab a 'to-go' menu, order it all, and bring it back to the car (MPV - Minivan), there's plenty of room in there to dine out LOL .. I KNEW one day those seats that turn into tables and those cup holders would come in handy.. YES.. I actually let him eat in the car! He really enjoys it and now it's a 'Which restaurant are we going to tonight'.
Aside from that I don't have much to tell, it's turning into a waiting game, Tom's doing great..We're definately seeing a physical improvement, a week or two ago he wasn't so fast on his feet, now he's a lot better at getting around and the pain in the legs is not as bad, he gets up and down stairs a lot easier, another month and he'll be ready to get back into contact sports (joke).
March 1st 2002 (Day 52 From Transplant, 48 days to the magic 100)
What happened to the cards? Wednesday was 'Happy Half Way Day' =:-) ...50 days out of transplant. Tom decided to make a cake, he also made one for 'Platelet Day' when they started to go up (photo's to be uploaded shortly)
Toms doing good, he doesn't have any problems anymore getting up and down the stairs, although his legs still look like pins. His protein levels are much better, although on the lower side, they are within acceptable parameters. Magnesium is still be sent through the kidneys a little quicker than it should be, so he's still getting that via IV. We did get some good news the other day, it's apparently a couple of weeks old, apparently they forgot to tell us! Toms tests for CMV DNA have tested negative, if you missed this in the previous updates, CMV is a virus that was passed on from Amy that can be a big threat to transplant patients, the ganciclovir drug (the mild chemo type drug) has finally destroyed it, he now takes it 5 days a week instead of 7, once a day instead of twice and will come of it fairly soon, another big potential risk smashed to pieces :) .. Go Tom Go .. and gancyclovir..Before this drug was released 80% of patients in Toms position would die!
His weight is good, slowly going up, he never really dipped to low anyway, he currently weighs 33.2kg/73lbs. He was a little higher but dipped after being taken of TPN, when we left the UK he was down to 31kg/68lbs.. so he's managed to put 5lbs on which is good. He is still losing a lot of skin, but the GVHD was brought under control, and in many places has gone, his legs still look bad, and it itches a little sometimes, it has also started to come back on his body, but they have switched drugs to help put an end to it. The doctors could not be happier with him, it's gone very well indeed, and the GVHD is giving us enough GVL Graft Vs Leukemia -- Amys cells knocking out Toms bad ones) that his chances of relapse are being lowered. Platelet wise he's doing fine.. they creep up each day, they are 27 now, a little low but the current meds he takes will do this, the good news is that it's almost 2 weeks since he had platelets, hopefully he'll never need blood products again.
His white cell count is up and down a little, which is fine, averaging around 25, they are keeping it higher than it should be by using 2 daily infusions of GCSF which artificially stimulates cell growth, this way by keeping these new cells high, it reduces the chances of Toms cells returning (relapse). He is still tearing through tube after tube of steroid cream, $120.00 a tube, and the tube lasts 2 days, his maintenance at home with the drugs, besides the blood tests and hospital visits is probably costing us around $500.00 a day.
Going back to the weight issue, he is eating very well, he has full meals and plenty of snacks, a good breakfast, which includes...wait for it... eggs... as veggies we never ate fried eggs etc, but choices have to be made, he was fighting a difficult battle against his protein levels, as his body is not functioning like it should do it's more difficult to get the correct balance, eggs were a perfect way to crank it up quickly, not the first time we've come across animal products, many of the meds use animal products such as the Heparin, but we've gotta do what we've gotta do, Toms health is numero uno.
We've decided that we'll have two birthdays from now on, his regular July 10th, and January 8th his transplant day, it's so similar in many ways to having a new born, Tom is disappointed though that it is so close to Xmas as he fears he won't get enough presents, he was very serious about this, I thought it was funny. I need to slot a little thank you in here for Mrs Winton for the cool popcorn packages that arrived the other day, both Tom and Amy love to open packages/letters etc. I'm sorry if Tom has not replied to your emails, he reads them all, but it's difficult to get him to reply, he's not quite focused on the reply side yet, there is always something going on, and of course now he's doing homework, did I mention he took a test to see if he could pass the next grade and passed with flying colors. He did receive a card from 'The Ambroses', it was signed by many of his old school friends, he REALLY liked it, put a big smile on his face, things like that help him keep his spirits up, which at times can be difficult, at least we're not counting up to the 50 days anymore, we're counting them down, 48...47...46..1.then we're off to Orlando, where we will stay until the end of the year to give his immune system time to recover, plus our doctor recommends that we stay within the USA due to the advanced medical care that is available, as we're only a 10 hour drive from Duke (or a 1+ hour flight) that will be an advantage, hopefully we won't have to take advantage of that though, flying on a regular plane will not be as big a risk also, then I hope we'll be back in the UK to celebrate his return and the holidays, you know it's only 302 days to Xmas! You better get shopping to avoid the rush.. I'll be counting those days down soon as well. Where we will decide to actually live after the end of the year has to be decided. Toms medical condition will have to play a part in the decision.
Nicola has prepared 70 photo's for a huge photo page update, I hope these will be on there before the end of the weekend, maybe tonight. Overall, considering what we were up against, it's looking very good indeed, hospital visits are now down to 3 times a week (full days) whilst he gets his meds and is checked out, of course we're all real busy on the days off, there is always something to do, and Tom is VERY high maintenance, worse than a Lotus! (I put that one in for my friend Chris S. You know who you are ;-) )
On a final note, Tom is, as usual, hammering me at Grand Turismo 3, I'll have to find some time to practice!
February 24th 2002 (Day 47 From Transplant) CODE BLUE!
Finally, I have something to write about! Writing 'Tom is doing great' was getting a little boring. We've had some excitement, and a little bit of a possible setback of some sorts. Tom actually is doing great, the counts are looking good, and it's one week today and still no requirement for platelets. So what's all the excitement about? Well, as you may know since starting treatment Tom almost immediately started with heart problems, the heart flying up to 250bpm for no apparent reason, aside from his hickman line being too far into the heart, which was removed by Duke. Since the removal he has had flutters but nothing much.
A couple of weeks ago he had an episode at home where he started beating, hard and fast, over 200 beats per minute again, it only lasted a few minutes but he had a difficult time breathing, it stopped fairly quickly really and that was the end of it. Yesterday he was at home and suddenly went faint, his vision went blury, and he felt like his heart stopped, his heart started to pump extremely hard, very fast, you could see the heart pumping, like it was trying to rip a hole in his chest, this thing was rolling and bumping a LOT, and felt out of rhythm,I counted well over 200 beats per minute, our blood pressure machine was throwing an error on the pulse, but showing lower than normal pressure. This was more severe than normal, we've seen this before and it normally stopped, this one did not look right, he started to feel sick and had trouble breathing, it was very similar to when he had the reaction when he had the transplant (And we all know how dangerous that was to him), so after a few minutes it was obvious things were not improving and we jumped in the car and flew to the hospital.
We took him into the hospital, he actually walked into clinic as we did not want to go to the E.R room due to infection risk, by the time we got him into clinic he was feeling rather bad, the vitals showed pressure was indeed low, and the oxygen level in his blood was going down. They ordered some x-rays and EKG, and gave him oxygen, he was at 3 liters of oxygen and his level was still dropping (NOT GOOD), plus his heart was hitting the 262 per minute. He was very calm as he had been in similar situations before. Dr. Martin turned up to join the now gathering crowd, he was immediately concerned about his condition and told us that he needed a drug to slow him down (I forget the name) and it should be delivered in the E.R as that was the quickest way to get it to him, they tried to get it for him in clinic and call in the staff to be there as you need certain equipment and people just in case, unfortunately people were not turning up on time so he felt the E.R was the place, and it was time to move there right away, when he called them, they were too busy to take him, so he decide the only option was to call a code blue (For those of you not familiar with this, this is the code you call when you need a crash team, the whole nine yards to handle seriously ill people whose life depends on immediate treatment). Once they call a code blue, it gets busy, fast. There were around 20 people there with all the portable crash equipment etc, the room was small so Nicola and I left and watched through the large glass doors, Tom was fine with this and was very calm and in full control. Once the drug went in, he was fine, it came down, he felt better very quickly, all was well....For the moment. They wanted us to stay overnight so we were transfered back up to the bone marrow unit and spent the night there. Oh, as his heart was messing up so badly, his lungs were starting to back up with liquid (blood) so he was not in good shape.
I volunteered to stay over, Tom had rested earlier, so decided whilst I was real tired, he wanted to walk up and down the unit at midnight.. Then we had to get him into bed, mess around with some lights that would not switch off and the list goes on, so.. 1am.. I get to bed... Then..from what I remember, around 3am I'm up putting calamine lotion on his very itchy legs.. back to bed, only to find a nurse waking me up at 7am .. Apparently they wanted Tom down in X-ray a.s.a.p. for another x-ray that would give a better clue to his problem. The x-ray did not show any problems with the current line. So where do we go from there? Well.. They did get this episode down on an the ekg and cardiologist took a look at it this morning, at the moment we are dealing speculations, he felt that the only way Tom could maintain this particular rhythm was if there was something wrong with his heart, normally you should have one pathway that connects the electricity in the heart from top to bottom, however Tom has two, which makes this problem possible. It's does turn up in kids this age as the heart grows, as parts of it should turn from fiberous to muscle this can go wrong and show the problem, probably something he was born with and for whatever reason is now showing.
This problem can be fixed. First of all it would take a test, 3 lines pushed into an artery in the groin and fed up into the heart where they will map all the electric activity and pin down the problem, if it is the pathway that is messed up, it can be dealt with, using invasive surgery to stop one of the paths functioning. This is all speculation at this point, Duke has a heart expert (They have an expert for everything), he will be looking at everything and then we'll meet in a day or so and discuss what is going on and what they feel could be done. It may be as simple as holding out until his line comes out to see if that is causing the problem by irritating him, hopefully removing that will solve the problem and allow him to conitnue in his current condition. I will keep you informed, this is all I know right now.
The GVHD is much, much better, well under control, Dr. Martin called him the snake, which was rather apt, as he is losing a lot of his skin due to the meds, the itching it gives him is not too good though, but the improvement IS huge.
February 19th 2002 (Day 42 From Transplant) WBC 14.3!
There goes all those days again, sorry for the lack of updates, I have been very busy with work, I WILL try to make them more often. He still has GVHD of the skin which is giving him that measles type rash, it can also itch him so we use lots of calomine lotion, we also use a LOT of creams to help stop the itching and also get rid of the rash, one of the tubes costs around $130.00 and he uses it up in two days. The Cyclosporin was not making the GVHD any better although it was not getting any worse so it was changed to FK506 which works a little differently, it's working well. It is a little strange, it starts at the top of the body and works it's way down, the skin starts to go red at first as all the blotches merge together to make one red face, then it goes brown and then it starts to peel REALLY badly, kinda like when I go to the beach! Only I seem to go red and then burn and then peel. His skin can also burn. His head is getting better, looks like the legs have a few days to maybe a week to go. His hands and legs are sore which made walking uncomfortable but that is also getting better.
The counts have been slipping down a little, but this is expected as the medication for the CMV does have this effect, unfortunately he is still testing positive for CMV DNA, they may consider changing to a different medication shortly. The all important neutrophil ratio is still very good, in the high 70's to 80's (%). He is still using up platelets, around a bag ever 3 days. Sunday should have been a day off, I just ran a blood test over to them, unfortunately it turned out that he needed platelets and blood, which takes hours to go through, so off Nic and Tom went to the hospital. He is also having magnesium every day, if it gets too low you it can cause seizures, whilst he was there they also gave him the magnesium. Whilst getting the magnesium one of the connections came apart, opening up his line and letting the blood flow out, so they had to give him a dose of anti-biotics and culture him just incase, so there went the day.. 12pm until 6pm. As he was all fueled up on Sunday we were given Monday off...First true day off since we started, I didn't have to take blood! And no we didn't wake up at 7am that morning.. :)
Just going back to the GVHD, they had also increased the steriods to keep it under control, what had happened is that as they lowered them Amy's cells decide to attack, we're hoping they can lower them soon as they can carry a few potentially nasty side effects, such as bone damage to the hips and so on.
We could not quite figure out what was wrong in our life, something was missing.. Definately something not right... Of course... GT3 for the Playstation =:-) .. We had our UK games with us which included the GT3 but it won't work in the USA machines, and we can't use the UK machine as I can't find our power adapater, so we popped out to Toy's R Us, and picked up a copy, Tom went in as it was very quiet middle of the day on a week day, of course he wore his mask. For those GT3 fans out there, and we know who you are :) , you might be interested to know that they have do seem have some differences such as the names for the cars, possibly different cars, Tom is not sure. The music is different for sure, more rock 'n' roll, which is cool, the intro is a Lenny Kravitz song (can't remember which one..and it's packed up to got to the hospital this morning)
We'll we're at day 42, one week tomorrow we'll be at the half way point to the all important 100 days, after which we hope we will be within a few days of packing up our bags and heading down to Orlando, where we will transfer to Florida Hospital (Disney Memorial Cancer Hospital) to be monitored as the show will be far from over.
February 12th 2002 (Day 35 From Transplant) WBC 19.0!
Those days keep flying past me, I MUST keep this site up to date! I am updating this site in the morning so don't have todays WBC count, but yesterday he was at 19.0 with 94% neutrophils (which is v.good) We've had some small set backs but nothing that could not be dealt with. The first is the return of GVHD the skin, this looks like a bad case of measles and it can itch in places, this was because they started to taper down the steroids which block the donor T cells from operating as they should, otherwise they would just attack his body/organs and this would of course be very, very bad, and can be fatal. They pushed the steroids up again and now it's back to the 3 creams, 3 times a day, anyway, Nicola should not be allowed to sit down and do nothing, it's just not right. He's showing no signs of GVHD anywhere else such as the gut so nobody is concerned, plus we will get the benefit of GVL (Graft Vs Leukemia) - Where Amys cells will track down any remaining leukemia cells that are hiding and nail 'em, so we'll think of this as another no pain no gain - for the good of the cause.
Sunday night he ran a temp of 38.5 but it went down again, I called it in and off we went to hospital for anti-biotics, when we got there they tested his platelets, they were 6, so we had to wait for platelets, needless to say we did not get to bed until 1am'ish. Although the platelets were low he had no bleed problems, as previously mentioned, since the vitamin K the bleeding on low platelets stopped immediately, a problem that had hounded him for 6 months whilst in the UK. We also had to go back to hospital for another anti-biotic shot last night, his temp was 38.1, and I questioned why he did not get another shot at clinic that day, nobody seemed to know why and if he should have done, as they assess the well being of the patient also, and Tom was ok, his 3 lines were cultured on Saturday and so far nothing has grown.
Today he will meet Dr. Kurtzberg, I am hoping that the time has come to remove him from the TPN as he is eating fine, for example yesterdays breakfast was two bowls of cereal (with special milk as he is lactose intolerant now due to the treatment), toast with jam and a hot cup of tea. Getting him off TPN will allow him to sleep through the night, rather than have to get up to 'expel' all of the liquids. Just going back to the GVHD, this is much worse than before, at least 50% of his body is covered.
Over the weekend he received a visit from Dorothy and Riad (Grandparents) but was not up to much as usual, he does okay, but I could best describe him as somebody that has just got over a really bad flu, when you just not feeling on top of the world and can't be bothered doing anything but drinking hot tea and watching the TV, not to say that on some occasions he is full of himself, especially when he got his hands on a nurf gun last night! :)
Changing the subject a little, there is another ex cancer patient climbing Mount Everest next month to put a flag on the top with names of cancer patients, our little hero Toms name will be on there :)
He does have other problems which I forgot to mention, fungus on his tongue, it's not causing any problems for him, and it does seem to be getting better, he's just started nystatin, which being a localized treatment should help a lot also.
Overall, he's doing well, medically, as I mentioned some time ago, getting out of the hospital and through transplant is only one hurdle of many that you need to go through, I can see that the 100 days after transplant are going to be packed with activity of some sorts, let's just hope that he stays on the path to recovery. We can't really complain, compared to almost all the other kids Tom actually has it easy (easy is a relative word), most the kids that we know, that have made it through have various undesirable complications and there are some children that are really struggling right now including some that have made visits to (and are still on in some cases) the pediatric high dependency unit, fighting for their lives, our heart goes out to all of those parents and the children. Unfortunately there have been some children who recently lost their battle, both here and in the UK, this is naturally very upsetting to see/hear about and no words can adequately express our sorrow to their parents, Tom thinks and talks about these children often, he will continue to fight this horrible disease in honor of all of those that were not fortunate enough to make it through.