We were lucky enough today to be a part of a nationwide drive to encourage people to become bone marrow donors. This is inspired by a 13 year old boy from USA - Patrick who has leukemia and is running himself silly getting people to become donors of bone marrow - too many of his friends have died while waiting and this story is a part of his crusade. Thank you Patrick for your unwavering devotion to this cause.
NBN local news did this story ...
Harrison's Story for Bone Marrow Donors on NBN
I am having trouble uploading the video but the vid is on this link to NBN website.
Consider getting a group together and go to the local blood bank. For what is a simple blood test - you just never know if you may match a child in need of a transplant and truly a transplant will give someone a chance to live- too many kids with cancer, SCID, leukemia and other rare blood disorders die every day without a life saving bone marrow transplant. It costs you nothing but means that when you look back on your life you can say you truly helped to save a life. Consider and go today - get a group - the more donors available the more lives can be saved. Many offered to become registered as a donor when Harrison became sick, he still may need an unrelated donor - get registered today and even if Harrison doesn't need any further help there are hundreds of children the world over who do. Its a very simple choice for a life saving gift.
Thursday, July 24, 2008
Wednesday, July 16, 2008
Thank you
There are an amazingly huge number of people out there who have supported, helped, worked and given up time to give us a hand, raise funds and visit in hospital .
I cannot begin to thank my mum, sister, brother and Scott's sister Michele, her partenr Glen and all of their family for the unwavering support and help and calls to keep our chin up - and to Michael and Rhonda for their wonderful support and helping things to still seem normal - even though they are far from that.
Also there are so many friends - old and new who without their help would have meant fundraising not being as successful, madness ensuing being cooped up in hospital rooms, and for buying things like nappies and chocolate or a dash to the chemist when I run out of medicine etc for Harrison - or have an emergency or two to run off to with him and need someone to watch the kids ::)
Also we have a wonderful team of Doctors (Immunology, Bone Marrow Transplant, Neurology, Opthamology (eyes), Audiology and GP and Paediatrician ) both locally at Gosford Hospital and at Children's Hospital Westmead, who are always in contact, who drop in to say hi when having IVIG - just because, who email and check on progress and who fit us in at short notice when things go sour. Our num from the Variety Ward, Di, retired last week and we did not get to say a proper goodbye but we do wish her well in her retirement. And to all of the wonderful and amazing hospital nursing staff who just treat Harrison like he is made of Gold, thank you - as every month I get VERY anxious about going to hospital for treatment fearing line infections, or worse and every month you make it fun, a laugh and feel like I am coming to a home away from home.
Finally to the kids, Marlie, Sterling and Ella who are fabulous with Harrison, are wonderful helpers - even when they need to hold his arms or keep him amused while I flush his central line. They keep me grounded and I am blessed to have had 3 wonderful children, I hope the trampoline Aunty Hope bought them helps and that the Disney On Ice show they went to in some way repays them for missing out on so much in the last year.
Many thanks for the emails, phone calls, donations, gifts, and comments left on this blog. Every single thing ever done for us is in my memory and when I find myself wishing for a different life, I remember that not many people are as blessed as we are in all of this . And for that I am most truly thankful of all.
Scott is my last thought in this - he works very hard in two jobs to keep a roof over our heads and even though we are separated, I want to be able to thank him - as without his hard work I don't quite know where we would be - and the most important thing is that he has given the kids a stable home environment - Thank you .
I cannot begin to thank my mum, sister, brother and Scott's sister Michele, her partenr Glen and all of their family for the unwavering support and help and calls to keep our chin up - and to Michael and Rhonda for their wonderful support and helping things to still seem normal - even though they are far from that.
Also there are so many friends - old and new who without their help would have meant fundraising not being as successful, madness ensuing being cooped up in hospital rooms, and for buying things like nappies and chocolate or a dash to the chemist when I run out of medicine etc for Harrison - or have an emergency or two to run off to with him and need someone to watch the kids ::)
Also we have a wonderful team of Doctors (Immunology, Bone Marrow Transplant, Neurology, Opthamology (eyes), Audiology and GP and Paediatrician ) both locally at Gosford Hospital and at Children's Hospital Westmead, who are always in contact, who drop in to say hi when having IVIG - just because, who email and check on progress and who fit us in at short notice when things go sour. Our num from the Variety Ward, Di, retired last week and we did not get to say a proper goodbye but we do wish her well in her retirement. And to all of the wonderful and amazing hospital nursing staff who just treat Harrison like he is made of Gold, thank you - as every month I get VERY anxious about going to hospital for treatment fearing line infections, or worse and every month you make it fun, a laugh and feel like I am coming to a home away from home.
Finally to the kids, Marlie, Sterling and Ella who are fabulous with Harrison, are wonderful helpers - even when they need to hold his arms or keep him amused while I flush his central line. They keep me grounded and I am blessed to have had 3 wonderful children, I hope the trampoline Aunty Hope bought them helps and that the Disney On Ice show they went to in some way repays them for missing out on so much in the last year.
Many thanks for the emails, phone calls, donations, gifts, and comments left on this blog. Every single thing ever done for us is in my memory and when I find myself wishing for a different life, I remember that not many people are as blessed as we are in all of this . And for that I am most truly thankful of all.
Scott is my last thought in this - he works very hard in two jobs to keep a roof over our heads and even though we are separated, I want to be able to thank him - as without his hard work I don't quite know where we would be - and the most important thing is that he has given the kids a stable home environment - Thank you .
1 Year Post Transplant.
Well I cannot firstly believe it has been two months between posts. I am so busy running kids around, doing physio and speech therapy with Harrison, taking the kids to school and gymnastics that i hardly have time to sleep!
Things are ok at the moment. Harrison is still having Intragam every month and his cell counts are still - well frankly - crap. His lymphocytes are steadily dropping point by bloody point - I was sort of hoping that a year into this we'd at least be seeing some positive improvement, immune wise, but NOOOOOOOOO.... We have the next lot of big blood testing to be done at Westmead Kids on 29th July, and on the same day Harrison sees the eye Dr. to find out how his vision is going.
Harrison has recently seen the neurologist who is arranging an overnight stay in September for a video EEG to be done, to see if these movements of his hands and feet are truly epilepsy or something else. We are otherwise happy with his progress.
On 22nd August we have the D day - as far as I am concerned anyway, that is the 1 year post transplant review and find out all the blood test results and see if this transplant is actually working and how long it will take, if it is, to gain some sort of normal immune function.
Harrison the last few weeks has really come along leaps and bounds in terms of his physical development - he now walks - although it rather looks like a very drunk man, and he takes as many sideways and backwards steps as he does forward, but nonetheless he is walking - a major step for him - just shy of hitting the 16 month old mark. He also talks - mostly babble but there are some definite words... in order of when they first made their appearance are :
"Dora", "Map", Mum, dad and Nan all at the same time and now he says Yep and No - although no comes out as NAAAAAA. Pretty impressive hey - can you tell he LOVES Dora the Explorer? He also dances and gives huge wet and slightly toothy kisses. Dancing happens at any time he hears any kind of music, and looks more like he is doing a set of squats but its also very cute as he bops even when sitting down too ! He gets too shy to let me film it though, so my mission this week is to catch him dancing on the sly for you all to see.
Our friend Ella in Singapore had a BMT ( from cord blood ) the same day as Harrison - and with some pretty big complications to get over has now got a fantastic lymphocyte count of 2.8 - so once they cycle her down off the immune suppressing and anti rejection drugs she will be normal and I think this is something we fan now aspire to! Well Done Ella, Narelle and Fergal, you made it this far :)
On a note re our car situation we were very lucky to come across a 7 seater car, that the Trust fund purchased for our family, BUT.. there's always a BUT... we were promised by another very large foundation help to assist in the purchase of this car, and at the last second - and after buying the car on their word they'd send funds in compensation - they reneged, and the trust has worn the entire cost of the car for our family. So I am extremely grateful and thankful that we did all that fundraising in order to be able to help out for this sort of thing, but as the receiving family I also feel incredibly guilty that the trust has had to do this too.. I cannot get into my head just how bad our situation is - and still feel that we don't need this car - even though in truth it is a blessing to have.
So the next fundraiser we do will be super special to me as I really want to be able to ensure at least some of the car funds are replenished.
What else, my sister had a baby 6 weeks ago, a bubba called Seth - he was only 5 pound born but is now a boomba at 9 pounds and mum and bub are well - my first nephew! YAY :)
Also and i don't know how else to write this down, and it has been ongoing for some time, but Scott and I are separated, and I don't know what else to say about it - except I am very sad that our relationship was not strong enough to survive all of what we have been going through. Not only in terms of Harrison's illness but the financial burden, relationship stress we were already under( and the like) that the whole child-being-sick situation brings with it. I guess life has to go on, for the kids sake at least as they don't need me falling apart at the drop of a hat when I get down about things, and so like every day of the last 12 months I put on a happy face and keep on pressing on.
Lately the way Harrison's blood counts have been I find it so much harder to keep smiling and find once the kids are in bed and I am alone I sit and try to clear my head and make sense of how everything has panned out. Lucky for me I have a girlfriend who is awake in the middle of the night my time, so I can call her and lose the plot for a time and get on with things again as normal. I don't want the kids to see me too upset as they think it is them I am upset with, and they have had enough to deal with this last 12 months.
My biggest worry now is that things are not going as well as planned for Harrison and maybe he may need a second bone marrow transplant - who knows 22nd of August is too far away right now - and I probably will get little sleep til that day is over.
Until then, physio for Harrison and intragam and Dr's reviews.. and gymnastics for the 3 big kids will continue on as normal, or as normal as things can be when you have four very crazy kids!
I will update pictures soon, all in the other computer which has decided to have a moment - for a week now :)
Things are ok at the moment. Harrison is still having Intragam every month and his cell counts are still - well frankly - crap. His lymphocytes are steadily dropping point by bloody point - I was sort of hoping that a year into this we'd at least be seeing some positive improvement, immune wise, but NOOOOOOOOO.... We have the next lot of big blood testing to be done at Westmead Kids on 29th July, and on the same day Harrison sees the eye Dr. to find out how his vision is going.
Harrison has recently seen the neurologist who is arranging an overnight stay in September for a video EEG to be done, to see if these movements of his hands and feet are truly epilepsy or something else. We are otherwise happy with his progress.
On 22nd August we have the D day - as far as I am concerned anyway, that is the 1 year post transplant review and find out all the blood test results and see if this transplant is actually working and how long it will take, if it is, to gain some sort of normal immune function.
Harrison the last few weeks has really come along leaps and bounds in terms of his physical development - he now walks - although it rather looks like a very drunk man, and he takes as many sideways and backwards steps as he does forward, but nonetheless he is walking - a major step for him - just shy of hitting the 16 month old mark. He also talks - mostly babble but there are some definite words... in order of when they first made their appearance are :
"Dora", "Map", Mum, dad and Nan all at the same time and now he says Yep and No - although no comes out as NAAAAAA. Pretty impressive hey - can you tell he LOVES Dora the Explorer? He also dances and gives huge wet and slightly toothy kisses. Dancing happens at any time he hears any kind of music, and looks more like he is doing a set of squats but its also very cute as he bops even when sitting down too ! He gets too shy to let me film it though, so my mission this week is to catch him dancing on the sly for you all to see.
Our friend Ella in Singapore had a BMT ( from cord blood ) the same day as Harrison - and with some pretty big complications to get over has now got a fantastic lymphocyte count of 2.8 - so once they cycle her down off the immune suppressing and anti rejection drugs she will be normal and I think this is something we fan now aspire to! Well Done Ella, Narelle and Fergal, you made it this far :)
On a note re our car situation we were very lucky to come across a 7 seater car, that the Trust fund purchased for our family, BUT.. there's always a BUT... we were promised by another very large foundation help to assist in the purchase of this car, and at the last second - and after buying the car on their word they'd send funds in compensation - they reneged, and the trust has worn the entire cost of the car for our family. So I am extremely grateful and thankful that we did all that fundraising in order to be able to help out for this sort of thing, but as the receiving family I also feel incredibly guilty that the trust has had to do this too.. I cannot get into my head just how bad our situation is - and still feel that we don't need this car - even though in truth it is a blessing to have.
So the next fundraiser we do will be super special to me as I really want to be able to ensure at least some of the car funds are replenished.
What else, my sister had a baby 6 weeks ago, a bubba called Seth - he was only 5 pound born but is now a boomba at 9 pounds and mum and bub are well - my first nephew! YAY :)
Also and i don't know how else to write this down, and it has been ongoing for some time, but Scott and I are separated, and I don't know what else to say about it - except I am very sad that our relationship was not strong enough to survive all of what we have been going through. Not only in terms of Harrison's illness but the financial burden, relationship stress we were already under( and the like) that the whole child-being-sick situation brings with it. I guess life has to go on, for the kids sake at least as they don't need me falling apart at the drop of a hat when I get down about things, and so like every day of the last 12 months I put on a happy face and keep on pressing on.
Lately the way Harrison's blood counts have been I find it so much harder to keep smiling and find once the kids are in bed and I am alone I sit and try to clear my head and make sense of how everything has panned out. Lucky for me I have a girlfriend who is awake in the middle of the night my time, so I can call her and lose the plot for a time and get on with things again as normal. I don't want the kids to see me too upset as they think it is them I am upset with, and they have had enough to deal with this last 12 months.
My biggest worry now is that things are not going as well as planned for Harrison and maybe he may need a second bone marrow transplant - who knows 22nd of August is too far away right now - and I probably will get little sleep til that day is over.
Until then, physio for Harrison and intragam and Dr's reviews.. and gymnastics for the 3 big kids will continue on as normal, or as normal as things can be when you have four very crazy kids!
I will update pictures soon, all in the other computer which has decided to have a moment - for a week now :)
Subscribe to:
Posts (Atom)
