Firstly I would like to take the opportunity to thank every one out there who asks after, emails, calls, sms's, or even just thinks positive thoughts for Harrison. I think the last week has been one of the most stressful and unhappy weeks of my life.
Almost daily I found myself crying for no reason, other than just lacking in sleep and being stressed about these test results, and suffering right along side of us have been our wonderful support of friends and family everywhere. And in true soppy fashion as soon as I saw my mum yesterday I burst into tears, but luckily of happiness. I didn't realise how stressed out I was until Dr Shaw called with results.
All this good news came on the 29th April ( yesterday) which is also Ella's 3rd Birthday. So hence forth it is a day of celebration. And good friends of ours had their first child - a daughter, named Darcy Barbara. A little 7 pound 9 ounce bundle, so triple the joy. Congratulations to Andrew and Rachel on the birth of beautiful Darcy.
And so the results - we have managed to avoid a second transplant for now. So breathe a big huge sigh of relief. Harrison is doing well within himself and seemed last week to be developing a very chesty cough. But, this seems to be going as quickly as it came. So we are hoping that means he finally is developing a way to fight his own battles - immune wise anyway!! :)
Harrison's counts came back showing all three types of white blood cells - T , B and NK. I talk of the percentages of donor cells - what this means is that there is a percentage of Ella's blood cells in Harrison's system - exactly as we'd expect after her bone marrow was transplanted. Eventually Harrison's blood type will change too( As he and Ella had different blood types - he was A and Ella O so we were very lucky that we could use Ella's marrow - as if the types were reversed Harrison may not have been able to received Ella's marrow afterall!)
The higher the % of female (donor) cells the more successful this transplant will be - ideally achieving 100% for all three types of white blood cells. (A recap) T cells are the main ones that identify infections, the B cells are the all important immunity making cells and the NK cells are the killer ones that do the actual battle. We need to see some really good NK and B cells growth in July to be completely second transplant free - but things are encouraging.
For the first time the NK cells are showing up with female cells at a whopping 20% , the B cells (which are going to be the slowest to grow) are still low but slowly climbing at around 30% and the T cells.... Drum roll please..... are now 76% female cells. So we have now reached a point where Harrison should be less susceptible to the more serious chest infections, and he can be out a little more - of course this is right as we come into cold and flu season, so I won't be taking him too many places!! Also his lymphocyte count which dropped down from 0.7 to 0.4 has gone back to 0.7, so we are going upwards every three months very slowly. But, they are still a long way off where they need to be ( at least 4.0 to function completely normally!) and hopefully the drop just meant he had a bit of a virus. The overall white blood cell count dropped too and this still shows to be very low. Not sure why it just is, hopefully it is nothing much to worry about and things will pick up a bit next month.
We are now back to see the eye Dr's and neurology and have the next big bloods done in July - the 29th at this stage, then a 12 month post transplant review will be held in August. Ideally as I said, the B cells will have come up a bit, and even if they never reach 100% as long as they are there in large numbers then Harrison will be able to produce his own immunity and our life may return to some normality.
I think this is the best news we could have had and I was so, well devastated, that he would have to undergo a second transplant and delay all his good work and development even further, but so good for now. Our friend Ella in Singapore is also going fantastically well, she achieved 100% T cells a while back and her counts are going up too! She is now at 1.88 lymphocytes, so it is something we look at as a positive sign, and Ella has been through the works compared to Harrison so if she can be doing that well, then Harrison can too.
And Scott has just been great through all of this, even though he has been stressed he has kept me together, for which I am ever thankful. I really have had the most appalling week in terms of being super emotional and cranky.
So, July it is , I am going to get going with Chiro and physio again as they were helping Harrison really well, and now that he is walking around furniture and crawling like a mad man everywhere, I want to make sure that he keeps going well, and get him down off his toes! If he was a girl I'd call him a big fat fairy ( ha ha ha) - but as he's not, I won't - but I tell you he'd rival any ballerina in the ability to stand on toes!
Maybe he'll be the next "Billy Elliott" - watch the movie :)
Anyway that's all for now - I popped in a video below to show you how the little tyke is changing from a bub to a boy - a VERY cheeky boy at that !
Wednesday, April 30, 2008
Saturday, April 19, 2008
Anxiously waiting
Harrison had blood testing done at Children's hospital on Wednesday - we now have to wait a week for these results, with the hope that all is fine and the reason his blood counts have dropped is because of an infection of some kind in his system.
I worry that he had the central line infection and his counts didn't drop so why now? I don't know - something in my gut just tells me things are not as great as the doctors predicted we'd be by now. And again a HUGE thank you to Mark & Donna for loaning me their car. What would we do without them and their second car.. Man they must get sick of the sight of me, and my phone number on their phones. I cannot express how much it is appreciated - and even though I get depressed at having to ask to borrow any car, I know there is a wonderful crew of support out there willing and offering help, and for that I am very thankful.
So, if the results come back next week ( we have to wait a week as they test for all the different types of white blood cells and the ADA enzyme as well - at least we don't have to wait for the toxic metabolites test from the USA - they didn't do that one!! ) and his BMT (bone marrow transplant) isn't working enough, then we have to make the decision as to whether to re-transplant him now. Or do we make the decision to wait til July, do the blood testing again and then make a decision if things are still not improving. 3 months more of uncertainty with no guarantees that things will improve - it does my head in just thinking about it.
I am running on no sleep and raging from desperation to being really over - anxious to crying-at-the-drop-of-a-hat, for no particular reason. Every time I wake up I think about these results and how much hinge on them.
My biggest fear is that after 6 months we had only hit 60% for his transplant ( that is 60% of his T cells are Ella's) . Normally other patients would have achieved 100% cells by 6 months. But Harrison didn't have the chemotherapy ( called conditioning) before the first transplant and so it was expected that this getting to 100% would take just a little longer than normal.
But now 9 months in things do not look so hopeful. Harrison's counts only went up 7 % over two months (between the stage of 4 to 6 months post transplant) which is pretty slow going, and if the same trend happens again from January to April, then we would be looking at somewhere around only 70% T-cells being Ella's. This is really not acceptable, and if the cell counts are anything under 80%, then we will have to seriously re-consider doing another transplant. In fact in my head I keep thinking it would be better to get it over with, than waiting for 3 more months until July, and then having to go again anyway - in a sense we wouldn't have the stress and uncertainty to have to go through.
But, the decision is still pending until these results are back in; and until then I will have a dreadful knot in my stomach. I could honestly just sit and cry for a week as I feel so helpless, hopeless - not sure which . And I really cannot do that as I have 4 little people counting on me to get up with a smile on my face to play with them, cook and keep going in general.
What really breaks my heart though, is that the kids will also have to go through this again too. I cannot begin to think how hard a second long stay in hospital will be for them and I will never really know just how damaging this will be to them.
As a parent to feel this hopeless and helpless - well there are no real words to describe my feelings and fear that I have. I hate the thought of putting Harrison through this, he will have to endure Chemotherapy and post transplant drugs if we do go a second transplant. With the first time he was so young and had so little immune system he didn't have the chemo (conditioning), nor did he need the anti rejection drugs, so we thought we were lucky.
The chemo will make him sick, and will undoubtedly sterilise him. It's funny that I never really gave a thought to him not having kids as an adult. I just expected that he would, with a little genetic counselling. Suddenly the very real nature of this condition emerges, and the reality of all our kids having their own kids when they get older will be just that much harder for them, and I feel extremely guilty suddenly.
And again I am teary, so I am going to leave it at that. I promise to update the blog when things are know re the results, hopefully explain them so that you all understand and let you know what our next step is. I cannot believe we are back to worrying about having a second transplant again. I really thought we were past this.
I hope my news next week is much more positive.
I worry that he had the central line infection and his counts didn't drop so why now? I don't know - something in my gut just tells me things are not as great as the doctors predicted we'd be by now. And again a HUGE thank you to Mark & Donna for loaning me their car. What would we do without them and their second car.. Man they must get sick of the sight of me, and my phone number on their phones. I cannot express how much it is appreciated - and even though I get depressed at having to ask to borrow any car, I know there is a wonderful crew of support out there willing and offering help, and for that I am very thankful.
So, if the results come back next week ( we have to wait a week as they test for all the different types of white blood cells and the ADA enzyme as well - at least we don't have to wait for the toxic metabolites test from the USA - they didn't do that one!! ) and his BMT (bone marrow transplant) isn't working enough, then we have to make the decision as to whether to re-transplant him now. Or do we make the decision to wait til July, do the blood testing again and then make a decision if things are still not improving. 3 months more of uncertainty with no guarantees that things will improve - it does my head in just thinking about it.
I am running on no sleep and raging from desperation to being really over - anxious to crying-at-the-drop-of-a-hat, for no particular reason. Every time I wake up I think about these results and how much hinge on them.
My biggest fear is that after 6 months we had only hit 60% for his transplant ( that is 60% of his T cells are Ella's) . Normally other patients would have achieved 100% cells by 6 months. But Harrison didn't have the chemotherapy ( called conditioning) before the first transplant and so it was expected that this getting to 100% would take just a little longer than normal.
But now 9 months in things do not look so hopeful. Harrison's counts only went up 7 % over two months (between the stage of 4 to 6 months post transplant) which is pretty slow going, and if the same trend happens again from January to April, then we would be looking at somewhere around only 70% T-cells being Ella's. This is really not acceptable, and if the cell counts are anything under 80%, then we will have to seriously re-consider doing another transplant. In fact in my head I keep thinking it would be better to get it over with, than waiting for 3 more months until July, and then having to go again anyway - in a sense we wouldn't have the stress and uncertainty to have to go through.
But, the decision is still pending until these results are back in; and until then I will have a dreadful knot in my stomach. I could honestly just sit and cry for a week as I feel so helpless, hopeless - not sure which . And I really cannot do that as I have 4 little people counting on me to get up with a smile on my face to play with them, cook and keep going in general.
What really breaks my heart though, is that the kids will also have to go through this again too. I cannot begin to think how hard a second long stay in hospital will be for them and I will never really know just how damaging this will be to them.
As a parent to feel this hopeless and helpless - well there are no real words to describe my feelings and fear that I have. I hate the thought of putting Harrison through this, he will have to endure Chemotherapy and post transplant drugs if we do go a second transplant. With the first time he was so young and had so little immune system he didn't have the chemo (conditioning), nor did he need the anti rejection drugs, so we thought we were lucky.
The chemo will make him sick, and will undoubtedly sterilise him. It's funny that I never really gave a thought to him not having kids as an adult. I just expected that he would, with a little genetic counselling. Suddenly the very real nature of this condition emerges, and the reality of all our kids having their own kids when they get older will be just that much harder for them, and I feel extremely guilty suddenly.
And again I am teary, so I am going to leave it at that. I promise to update the blog when things are know re the results, hopefully explain them so that you all understand and let you know what our next step is. I cannot believe we are back to worrying about having a second transplant again. I really thought we were past this.
I hope my news next week is much more positive.
Tuesday, April 15, 2008
Big blood testing at Westmead Kids again
Last blog post I mentioned Harrison's blood counts have dropped. In lamens terms you and I have a count of about 4.0 lymphocytes or better ( or 4000 cells) Harrison has now 0.4 ( 400 cells) which is a crap amount and half of which he had a month ago.
I have since this result been not sleeping well, stressed about these counts, worried about the chest x-ray he had done at the immunology review, and now we are back for testing. So I have arranged to borrow Mark and Donna's car ( our neighbours, friends and Harrison's godparents) which is lovely but it really shits me that I even had to borrow a car - actually Mark offered which is even lovelier, but I still hate that I have no choice but to borrow a car. I wish I had a car that I could just get in and go, and that it didn't cost me a damn fortune in cab charges to do it.
So enough of that - yes I am frustrated - we go to Westmead Kids tomorrow. I think I am seeing the BMT doctor Peter Shaw, and Harrison is having all the major blood testing done. This test will take yet another week to come back with results, but on the plus we will have answers to all of Harrison's progress or lack of, depending...
They will test the total number of white blood cells & how many of these are of "donor origin" e.g. Ella's cells, the breakdown of these - called subsets, which are known as T cells, B cells, NK cells and there is a bunch of other ones they test for too. The B cells were only at about 22% of the cells being Ella's at last check in January - so I am hoping for a miracle of sorts and see these cells dramatically increased. Same for the T cells - we were about 60% Ella's cells in Jan, so I am hoping to see them at about 80%. What scares me in all of this is the wait, the unknown and the what ifs.
He may still need the second bone marrow transplant and what the hell will that do to the kids ? They went through enough the last time and this time would be no better - in fact worse as if we do go a second round, Harrison has to have chemo, and drugs post transplant to stop the BMT rejecting and making him sick.
I don't think I would cope as well with a second trip for a lengthy stay, but at least this time around I know that I have the same support I had last time and that Scott will be more active in staying at hospital with Harrison. What really frustrates me though is that we are just now - 9 months after the last transplant - starting to get on top of things. Most of the medical bills have been finalised now, we've managed to get thru the first round of fundraising, and Harrison has come along developmentally in leaps and bounds.
He is climbing up stairs - although this is a worry as his only way of coming down them thus far is ROLLING.. Not good for the central line! What delay will another trip set him back though, and how long does this then take to correct this round? Ahh will it ever end? When will there be a light at the end of the tunnel for our family and what else will Harrison have to endure before things get better for him.
What sort of delay would another hospitalisation give him, and how damaging emotionally to the other 3 kids would this process be? It's bad enough that every time I walk out the door with Harrison to say I am going to hospital with him or for blood tests, the kids ask am I coming home, and they get this very frightened and sad look on their faces. I hate with every ounce of my being that they are suffering through this, but there is also nothing that I can do to change it. I feel that this whole thing has been so unfair on them that I am compelled to make it up to them at every opportunity I get. But, financial strain & the ridiculously rising mortgage costs simply prevent this too.
While Harrison is actually going through the illness , it is also the other 3 kids who suffer, not just with him but in their own right as well. And truly that is what worries me the most. So I am signing off this blog with a sigh, not knowing what tomorrow will bring and desperately trying to avoid the gut feeling that things are not all well. I hope I am wrong.
I have since this result been not sleeping well, stressed about these counts, worried about the chest x-ray he had done at the immunology review, and now we are back for testing. So I have arranged to borrow Mark and Donna's car ( our neighbours, friends and Harrison's godparents) which is lovely but it really shits me that I even had to borrow a car - actually Mark offered which is even lovelier, but I still hate that I have no choice but to borrow a car. I wish I had a car that I could just get in and go, and that it didn't cost me a damn fortune in cab charges to do it.
So enough of that - yes I am frustrated - we go to Westmead Kids tomorrow. I think I am seeing the BMT doctor Peter Shaw, and Harrison is having all the major blood testing done. This test will take yet another week to come back with results, but on the plus we will have answers to all of Harrison's progress or lack of, depending...
They will test the total number of white blood cells & how many of these are of "donor origin" e.g. Ella's cells, the breakdown of these - called subsets, which are known as T cells, B cells, NK cells and there is a bunch of other ones they test for too. The B cells were only at about 22% of the cells being Ella's at last check in January - so I am hoping for a miracle of sorts and see these cells dramatically increased. Same for the T cells - we were about 60% Ella's cells in Jan, so I am hoping to see them at about 80%. What scares me in all of this is the wait, the unknown and the what ifs.
He may still need the second bone marrow transplant and what the hell will that do to the kids ? They went through enough the last time and this time would be no better - in fact worse as if we do go a second round, Harrison has to have chemo, and drugs post transplant to stop the BMT rejecting and making him sick.
I don't think I would cope as well with a second trip for a lengthy stay, but at least this time around I know that I have the same support I had last time and that Scott will be more active in staying at hospital with Harrison. What really frustrates me though is that we are just now - 9 months after the last transplant - starting to get on top of things. Most of the medical bills have been finalised now, we've managed to get thru the first round of fundraising, and Harrison has come along developmentally in leaps and bounds.
He is climbing up stairs - although this is a worry as his only way of coming down them thus far is ROLLING.. Not good for the central line! What delay will another trip set him back though, and how long does this then take to correct this round? Ahh will it ever end? When will there be a light at the end of the tunnel for our family and what else will Harrison have to endure before things get better for him.
What sort of delay would another hospitalisation give him, and how damaging emotionally to the other 3 kids would this process be? It's bad enough that every time I walk out the door with Harrison to say I am going to hospital with him or for blood tests, the kids ask am I coming home, and they get this very frightened and sad look on their faces. I hate with every ounce of my being that they are suffering through this, but there is also nothing that I can do to change it. I feel that this whole thing has been so unfair on them that I am compelled to make it up to them at every opportunity I get. But, financial strain & the ridiculously rising mortgage costs simply prevent this too.
While Harrison is actually going through the illness , it is also the other 3 kids who suffer, not just with him but in their own right as well. And truly that is what worries me the most. So I am signing off this blog with a sigh, not knowing what tomorrow will bring and desperately trying to avoid the gut feeling that things are not all well. I hope I am wrong.
Thursday, April 10, 2008
When does it all get better?
I find myself asking this question a lot lately.. When ? When will the transplant be classified successful enough that I can go back to work? When will Harrison stop having monthly bloods, intragam, and reviews with doctors? When will life be normal again? In fact will life EVER be normal again?
This last week has been so up and then down. Immunology review was good. No bloods or toxicology done so I thought that to be a very encouraging sign. But then this week we had intragam and Harrison had the basic monthly bloods done, only to show his damn lymphocyte counts and white blood cell count have dropped by about half of what they were a month ago - IE
his white cell count was 4.5 now it is 2.2 ( so from lowish to bloody terrible) and the lymphocyte count was 0.7 or 0.8 and is now 0.4. In order for this to be considered anywhere near close to normal it will be somewhere around the 4.0 mark.. We are a VERY long way off.
If my self control didn't stop me I would have walked to the Gosford waterfront and screamed.
Instead I visited my work.. and even though it was so wonderful to see everyone there, I walked away thinking when will my life go back to normal? When will Harrison get good counts. Now don't get me wrong I love being at home but I am totally sick of the sight of my four walls.
No car makes it a little worse still, as I am about ready to carjack the next person who drives by me in a people mover... Well maybe not just any people mover, but definitely a late model people mover - there's a nice Chrysler Grand Voyager driving around - and if i'm car jacking a car it may as well be a good one!!! Anyway we've contacted a foundation to try to help us out with a car or at least some money to buy a car so fingers crossed this comes off.... :)
Now in terms of Harrison's counts, I have contacted immunology to help explain the rotten cell counts he has had, and as soon as I know anything I will post it here. Hopefully it is a glitch and he'll have a miraculous recovery and go up a bit too?? Wishful thinking - maybe, but need to focus on something that has a positive edge!
I just need an answer to why? His counts have been really good and have gone up little by little, but now a sudden and quite scary drop in numbers from my point of view. Anyway thought I should add this today as it has been just such a disappointing day.
Tomorrow - hopefully the sun will come out tomorrow, it will stop raining for just 1 day tihs week and answers will make sense.... tomorrow.............
This last week has been so up and then down. Immunology review was good. No bloods or toxicology done so I thought that to be a very encouraging sign. But then this week we had intragam and Harrison had the basic monthly bloods done, only to show his damn lymphocyte counts and white blood cell count have dropped by about half of what they were a month ago - IE
his white cell count was 4.5 now it is 2.2 ( so from lowish to bloody terrible) and the lymphocyte count was 0.7 or 0.8 and is now 0.4. In order for this to be considered anywhere near close to normal it will be somewhere around the 4.0 mark.. We are a VERY long way off.
If my self control didn't stop me I would have walked to the Gosford waterfront and screamed.
Instead I visited my work.. and even though it was so wonderful to see everyone there, I walked away thinking when will my life go back to normal? When will Harrison get good counts. Now don't get me wrong I love being at home but I am totally sick of the sight of my four walls.
No car makes it a little worse still, as I am about ready to carjack the next person who drives by me in a people mover... Well maybe not just any people mover, but definitely a late model people mover - there's a nice Chrysler Grand Voyager driving around - and if i'm car jacking a car it may as well be a good one!!! Anyway we've contacted a foundation to try to help us out with a car or at least some money to buy a car so fingers crossed this comes off.... :)
Now in terms of Harrison's counts, I have contacted immunology to help explain the rotten cell counts he has had, and as soon as I know anything I will post it here. Hopefully it is a glitch and he'll have a miraculous recovery and go up a bit too?? Wishful thinking - maybe, but need to focus on something that has a positive edge!
I just need an answer to why? His counts have been really good and have gone up little by little, but now a sudden and quite scary drop in numbers from my point of view. Anyway thought I should add this today as it has been just such a disappointing day.
Tomorrow - hopefully the sun will come out tomorrow, it will stop raining for just 1 day tihs week and answers will make sense.... tomorrow.............
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