Well things are not as rosy as I was hoping! Harrison will need his second bone marrow transplant after all, but he does not have to have the conditioning before it - instead they will give him the cells we still have frozen as a kind of top up. This is great news as we are only adding to his progress this far, not restarting - good for him, good for us and good that he has no chemotherapy to add to his woes! :)
This can of course still have its own little complications but we'll get to that if anything bad happens. Harrison has stopped having IVIG for now so that his next lot of bone marrow cells (hopefully) start making B cells straight away. Harrison's B cells have not grown very well and by stopping the immunoglobulins being given monthly we will hopefully make the new bone marrow cells think these are lacking and therefore make new ones. We all know he is lacking in these cells and that he does not make his own immunity but his body seems to be thinking otherwise at this point. ( Harrison's T cell count is about 83% Ella's cells now - so we are making slow progress )
There are a few issues we therefore have to watch out for - making sure that we go back to Westmead Children's hospital weekly after the second lot of marrow, making sure that any signs of problems are seen to immediately - as there is a slight chance that these cells may react and cause Graft versus Host disease, a potentially lethal side affect of this bone marrow transplant process where the new marrow cells attack the body they are put into. Hopefully this won't happen. And Harrison and Ella are such a good match that he should be ok.
Then we have the worry about the cells themselves, given they have been frozen for longer than 12 months. They may not work as well, there could be other issues that come from this but again until they are delivered into his body we have no way of knowing what is to come.
Until the new marrow has had time to take effect Harrison will not have any IVIG temporarily, which puts him at risk a little of infection, but then he will restart a short course to give him the top up he needs monthly of immunity cells, and by the end of October we should have an idea of how things are progressing. If things are well then we may even be able to get Harrison about more, but I will hold by breath til January for this to truly happen, so if he goes well and he can start to go out and about more, earlier, then this will just be a bonus.
Otherwise he is doing well - bar a chest infection this week, and yet another course of antibiotics.. Oh well at least he doesn't get pneumonia!
I will update from kids hospital after the transplant with photo's for you all to see.
Friday, August 29, 2008
Friday, August 8, 2008
Harrison's Blood Counts thus far, eye sight review and neurology stuff
What a doosy this blog is - all very medical but I will try to keep it as simple as possible.
OK on the 31st July Harrison had bloods taken to assess the progress of his transplant, and to quote our BMT Doctor - slow and steady.. More like just plain old slow - but that is enough of my griping.
Harrison has a lymphocyte count of 0.8 (800 cells) so still a tad off the 4.0 we are aiming for - which means he is still quite badly immune deficient, and susceptible to infection. Hi white blood cell count had been low for some time - very low in fact, but this seems to have risen to 5.3 from 2.2 - and although this count is still low(and therefore not close to being normal) its a step in the right direction!
His neutrophils which have been up and down like a roller coaster lately have settled back down to a nice healthy (and in normal ranges) number - which is a good thing as these cells help fix you up when you cut yourself, and boy oh boy Harrison has been on a one man self destruction mission of late! He has been very wobbly lately - more so than normal on his feet and this is partly due to ear infection but I am not sure this answers the problem completely. As a result of his almost drunken walking "style" he has split his lip open in four separate places, cut above his eye - which had to be glued, had his fingers trapped in a door as it was being shut - he was falling and grabbed onto the door jam & was caught right down to the knuckles on his hand, and he has chipped off a good sliver from one of his front teeth. To say he is in the wars, well that would be an understatement.. I am beginning to think about bubble wrapping him for protection.. Then he could be a bubble boy in more than one sense! :)
And lastly the all important T cell count. Was 76% now 3 months later only 83% - that is donor cells in his blood system. So while it is positive that this number is increasing , its still aways off being classified as a success. URRRGGGHHHHH.. Hopefully the B cell numbers will have grown somewhat, as if they are still around the 25% mark then things may not be so good - and these we need so he can make his own antibodies and get off having the immunoglobulins infusion every 4 weeks.
So we wait - and also the test for the toxic cell % is still being done in the USA - which may or may not be back in time for our 1 year post transplant BMT review on 22 August. If this figure goes up again, then this could also indicate a few problems. Hopefully things will be all good, cause honestly I don't know how any of us would fare with Harrison having a second transplant done.
Now we get to the eyesight review - the first one in 9 months and so far not too bad. We found out that Harrison's retina has only changed very slightly, and there seems to be no swelling at the back of the eye causing issues, and both eyes have the same visual acuity - ie they can see the same. Harrison's left eye though, has a turn in it and it has gotten so bad that he no longer uses the eye, instead turning his head so his right eye takes off the strain. We are now desperately patching the right eye to get the left eye muscles to correct, and on 22 August we will find out if the eye patching - and the utter upset that this has caused Harrison has worked. At the moment we have to patch the right eye for up to 3 hours a day - in short sessions.
Harrison won't walk around a whole lot when he has the patch on, and so far the only way I can keep him distracted enough to leave it alone is to put on Dora the Explorer on the DVD. He at least leaves the patch for up to 30 minutes, but the poor thing struggles. His eyes both flicker an twitch and his nystagmus (shaky eyes from left to right) gets so bad he just has to sit.
I really don't see much improvement yet, but I will keep on keeping on, until we have the review. If this does not work it simply means Harrison will be given glasses - a little earlier than the Dr wanted to give him but he definitely needs them already anyway, and so if its a bit early - well, what's the difference really? The Dr said Harrison's eyeball shape has a bit to do with his poor vision, they are more football than soccer ball shaped like most of us have, so his vision will naturally be affected anyway- The Dr said that Harrison's eye were between 3.5 and 4 "clicks" and most kids are a 1 - 2 measure - so he is a bit outside the norm anyway:) We knew that already but hey!
Also the whole SCID and RP thing has never really been dealt with before - both conditions are usually a genetic inherited thing - RP is a dominant thing - ie parents usually have it or carry it on dominant genes and pass it on, where as SCID is recessive and far less frequent. Never has there been a SCID kid with RP - it's just not heard of, and so we heard the word SPECIAL a lot at kids. We knew that of course, even from conception and his pregnancy surviving the implant of an IUD after I was already pregnant, that he was special, we just didn't know how "SPECIAL" he would turn out to be. !!! The Dr's are now running on the theory that Harrison juswt had something special and the RP is not in fact, a second genetic inherited disorder, but just a side affect of the SCID - Lucky him :)
His neurologist has cut down one medication to twice a day instead of three times a day - and we have a review and overnight stay on 1st Sept to assess his epilepsy more then.
Anyway that said in true Harrison fashion he is now awake at 11.00pm just as I was hoping to go to bed. I will now go get him and try again to settle him down.. Ahh kids - don't you just LOVE them? Hmmm ... Hope this all makes sense - if not drop an email and I will try to explain better.
OK on the 31st July Harrison had bloods taken to assess the progress of his transplant, and to quote our BMT Doctor - slow and steady.. More like just plain old slow - but that is enough of my griping.
Harrison has a lymphocyte count of 0.8 (800 cells) so still a tad off the 4.0 we are aiming for - which means he is still quite badly immune deficient, and susceptible to infection. Hi white blood cell count had been low for some time - very low in fact, but this seems to have risen to 5.3 from 2.2 - and although this count is still low(and therefore not close to being normal) its a step in the right direction!
His neutrophils which have been up and down like a roller coaster lately have settled back down to a nice healthy (and in normal ranges) number - which is a good thing as these cells help fix you up when you cut yourself, and boy oh boy Harrison has been on a one man self destruction mission of late! He has been very wobbly lately - more so than normal on his feet and this is partly due to ear infection but I am not sure this answers the problem completely. As a result of his almost drunken walking "style" he has split his lip open in four separate places, cut above his eye - which had to be glued, had his fingers trapped in a door as it was being shut - he was falling and grabbed onto the door jam & was caught right down to the knuckles on his hand, and he has chipped off a good sliver from one of his front teeth. To say he is in the wars, well that would be an understatement.. I am beginning to think about bubble wrapping him for protection.. Then he could be a bubble boy in more than one sense! :)
And lastly the all important T cell count. Was 76% now 3 months later only 83% - that is donor cells in his blood system. So while it is positive that this number is increasing , its still aways off being classified as a success. URRRGGGHHHHH.. Hopefully the B cell numbers will have grown somewhat, as if they are still around the 25% mark then things may not be so good - and these we need so he can make his own antibodies and get off having the immunoglobulins infusion every 4 weeks.
So we wait - and also the test for the toxic cell % is still being done in the USA - which may or may not be back in time for our 1 year post transplant BMT review on 22 August. If this figure goes up again, then this could also indicate a few problems. Hopefully things will be all good, cause honestly I don't know how any of us would fare with Harrison having a second transplant done.
Now we get to the eyesight review - the first one in 9 months and so far not too bad. We found out that Harrison's retina has only changed very slightly, and there seems to be no swelling at the back of the eye causing issues, and both eyes have the same visual acuity - ie they can see the same. Harrison's left eye though, has a turn in it and it has gotten so bad that he no longer uses the eye, instead turning his head so his right eye takes off the strain. We are now desperately patching the right eye to get the left eye muscles to correct, and on 22 August we will find out if the eye patching - and the utter upset that this has caused Harrison has worked. At the moment we have to patch the right eye for up to 3 hours a day - in short sessions.
Harrison won't walk around a whole lot when he has the patch on, and so far the only way I can keep him distracted enough to leave it alone is to put on Dora the Explorer on the DVD. He at least leaves the patch for up to 30 minutes, but the poor thing struggles. His eyes both flicker an twitch and his nystagmus (shaky eyes from left to right) gets so bad he just has to sit.
I really don't see much improvement yet, but I will keep on keeping on, until we have the review. If this does not work it simply means Harrison will be given glasses - a little earlier than the Dr wanted to give him but he definitely needs them already anyway, and so if its a bit early - well, what's the difference really? The Dr said Harrison's eyeball shape has a bit to do with his poor vision, they are more football than soccer ball shaped like most of us have, so his vision will naturally be affected anyway- The Dr said that Harrison's eye were between 3.5 and 4 "clicks" and most kids are a 1 - 2 measure - so he is a bit outside the norm anyway:) We knew that already but hey!
Also the whole SCID and RP thing has never really been dealt with before - both conditions are usually a genetic inherited thing - RP is a dominant thing - ie parents usually have it or carry it on dominant genes and pass it on, where as SCID is recessive and far less frequent. Never has there been a SCID kid with RP - it's just not heard of, and so we heard the word SPECIAL a lot at kids. We knew that of course, even from conception and his pregnancy surviving the implant of an IUD after I was already pregnant, that he was special, we just didn't know how "SPECIAL" he would turn out to be. !!! The Dr's are now running on the theory that Harrison juswt had something special and the RP is not in fact, a second genetic inherited disorder, but just a side affect of the SCID - Lucky him :)
His neurologist has cut down one medication to twice a day instead of three times a day - and we have a review and overnight stay on 1st Sept to assess his epilepsy more then.
Anyway that said in true Harrison fashion he is now awake at 11.00pm just as I was hoping to go to bed. I will now go get him and try again to settle him down.. Ahh kids - don't you just LOVE them? Hmmm ... Hope this all makes sense - if not drop an email and I will try to explain better.
Harrison driving me nuts while trying to blog
Harrison seems to think he is the next Bill Gates - microsoft would nmot know what hit them if this happened - something like a cyclone methinks....
fbSo Harrison is going to type and when he goes to bed v
i will update ... see how helpful hhe is !!!!
s
v bfdsscxxcszcdnvfv g v fc ff fcv m ty n yuy uyxnn h fde54vbb ffd v czvvcfvvb frfvxscA aw2dsrAQVSFDX I will leave it to you to translate!!!!!
fbSo Harrison is going to type and when he goes to bed v
i will update ... see how helpful hhe is !!!!
s
v bfdsscxxcszcdnvfv g v fc ff fcv m ty n yuy uyxnn h fde54vbb ffd v czvvcfvvb frfvxscA aw2dsrAQVSFDX I will leave it to you to translate!!!!!
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