Life in the fast lane

Well I know it has been a while since my last post. Harrison (I feel) is doing well, and things are swiftly moving in life generally.


On the 3rd September Harrison underwent a second bone marrow transplant - basically just the second lot of cells frozen away were used as a top up - to try to boost along his first BMT progress. This was cool as I got to see the whole thing - as I missed most of Harrison's first transplant trying to be in two places at once - as that day Ella had the bone marrow harvested and I tried to be with her and Harrison by running around back and forth - so this was a lot calmer. Harrison was quite a stinky boy after this BMT, as the preservative in the stuff STUNK to high heaven! But 3 days later he was stink free and looking good - and thus far has gone well with no signs of infections, transplant problems and other things that can occur when no chemo is done!

As yet I don't really know how well this is going, but... Harrison is now 20 months old and is now 12 weeks post second bone marrow transplant. We find out on 3rd Dec 08 the results of this progress - a month of waiting for blood test results will finally be over :)


Lately things have changed at the home front too. The kids and I have moved to my mum's house and Scott & I have made our separation final. Our home of 4 and a half years is being sold and then everything will be really complete. The kids have really settled in well at my mum's though, so this is encouraging.


I have no pictures to add with this, but promise some shortly.


Harrison saw the neurologist regarding his epilepsy a bit over a month ago, and it was decided that he has some epileptic discharges on his EEG, but the Dr's felt that we could take Harrison slowly off one of his epilepsy medications as they felt the two he takes were no longer necessary. Unfortunately in the process of reducing him down off the medication he started to have seizures, where he lost muscle tone and his head would drop quite severely. So... Back on the medication he went, and now it has been increased further to get these seizures under control. At least we found out about it and it is being controlled now - but the seizures are not good and can make him quite unstable on his feet - he looks a bit bruised and battered on his forehead due to falling on it a few times!! Ah - he is a boy though, after all!

We have recently had a review with Harrison's eye Doctor. Due to Harrison having Retinitis Pigmentosa he has 3-4 monthly reviews to ensure the eyes are still OK. Because Harrison has a turn now in his left eye we have to patch the right eye for 1.5 hours each day in an effort to strengthen the left. This works some days but mostly not as he really fights the patching process.. But in the long run it will help his eyes and that is the main thing - and so we persevere. Harrison's retina's both look quite patchy on the outside (peripheral) section - basically meaning that he is losing his peripheral vision and will slowly develop night blindness. Unfortunately for Harrison his retina degradation is already quite severe. Most people live a normal life til in their 50's when they start to be badly impacted by this disease. Harrison eye's, by comparison to a person who has a family history of retinitis (RP), looks like a person would in their 30's. So his degeneration is expected to be much quicker and the services of Vision Australia will be needed soon. His Dr anticipates him to need a laptop computer for use during primary school to assist him. He also says that because they have no information on the effects of immune deficiency, and bone marrow transplants on people with a retina condition, they have no idea if this will make things worse, or help Harrison's case. Time will basically tell.

In the 18 months since the Dr's diagnosed Harrison with RP, they have noticed a change in the optic nerve- gone from pink to rather white looking because the blood vessels have all thinned. For me I feel this means that he will probably not see adulthood with vision in tact. I have to say that it makes me feel quite sad that his life will not be as full as mine or his brother and sisters lives, and there are days- like today - that I could sit and just cry for what will never be. And I really wish I knew why. Noone can give us that answer though, and so I guess I will just have to settle for I'll never know.

I also wonder at how this will impact on Marlie, Sterling and Ella as they grow up- having to always watch out for their baby brother. Some days I look at them and see how grown up they have been forced to become. But without them life just would not be the same. And Harrison will always have lots of people to love and support him, no matter what happens in the future - and for that I am the most thankful.

And so life goes on, Christmas is approaching and Harrison will hopefully (no infections please !!) will have his first Christmas at home. And as we live next door to a man who has a thousand Christmas lights out already, and all of my kids love the lights, I too am going to take on the Christmas spirit and light up our house too!

Pictures coming next blog . and it won't take me 3 months to do this one I promise.

Bone Marrow Transplant Review

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.

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.

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!!!!!

Bone Marrow Donor Drive

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.

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 .

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 :)

Life is good!

Well things have settled here somewhat, with Harrison becoming a very normal little boy in many respects. He has discovered a few loves, most of which either gross me out totally, or make me laugh - usually at the same time !

He is I think, in love with our vacuum cleaner. We have a bright green vax, and he spends a good part of the day playing with "Vaxie" - generally pushing it around. He has gotten to be very clever and even now takes Vaxie for walkies. He pushes the vax around and attempts to walk along behind it. I feel this is a huge and impressive step - although he takes the most huge steps and ends up falling on his tummy 9 times out of 10. But he is really trying so I think that is really a celebration in its own right.

He has a love of stair climbing and goes straight up the stairs into the bathroom, and splashes in the toilet bowl. My pet hate as I then have to clean him down, change him and I use the antibacterial gel all over him - oh well!! LOL

He is a funny creature and has a few good habits and quite a number of bad ones. Being the fourth child certainly has its charm. Harrison doesn't talk very much and is a lot quieter than the other three, BUT he has learned ALL of their bad habits, tantrum throwing ability and taken this rolled into his own version and has come out just a tad worse. My biggest worry is what I am in for as he develops into a toddler and oh boy, I am kind of wishing that I could miraculously skip this bit. And he needs to learn to sleep a bit better during the day - but I think we have an issue more with his epilepsy upsetting his sleeping than him actually being a bad sleeper, but then who knows. As I type he is nearly asleep in the high chair, so better get him down now - YAY!! !

Harrison is generally doing well, blood counts have not changed which is disappointing but I am just waiting til July. We are planning for Neurology reviews and I am seeking help for his physical development and food problems we have with him.

We are almost at the end of our birthday season - as I like to call it, with Marlie having her 6th Birthday this weekend. So I am in the middle of a party plan, which we will be hosting at Mum's house, so to keep Harrison away from the dozen odd 6 year olds coming to Marlie's Princess/Prince party.

We have a car to get around in - it is great and has practically wiped out the trust money we had for Harrison and I am extremely grateful for this - but we have to do something about the lack of funds now in the trust account. At least i can jump in the car, get Marlie from school, Sterling and Ella from day care and get Harrison to appointments without planning things a week in advance to ensure I have transport. It is amazing how a simple thing like having a car can make life seem so much more normal. And I don't feel like I am burdening everyone around me.

I have been letting Harrison go outside on our paved courtyard, so he gets the idea of crawling about outside, and he seems to love it, but I am very wary of him getting too dirty still! Ah one day I can take him to the beach - just as soon as we get rid of the dastardly central line!

I hope all is well in the big wide world, my friend Beth, who has been in London for 12 months is back in Oz, so we can catch up soon I hope, before she races back off again for another 2 years.

Really I want to be her luggage - just so I get a holiday - but I fear the ride in a suitcase all the way to England would be a killer on the old back, and Beth's luggage would be far too heavy for normal check in and would cost her far too much in excess baggage fees to make the trip worth it!! Anyway one can dream :)
Next post will have pics, promise!! :)

A day to celebrate

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 !

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.

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.

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.............

HAPPEE BIRTHDAE HARRY!!!!

Well he's not Harry Potter - but he has just had a birthday - His giant big first birthday. 6th March 2008. What a massive year it has been and it took a lot of strength I really don't have at the moment to go back over the following pictures.














I still cry - probably more now than when the bad stuff was actually happening , and these just make it even harder.. I don't actually know how we survived the last 12 months - probably sheer determination more than good management and a massive backing from wonderful freidns and family. Your support and help got us through - so Harrison's birthday is not just a celebration of achieving one - it is a celebration of survival and for those wonderful people and family members out there who have been so kind, encouraging and supportive and we owe you a huge big thanks also.

I am putting together video of this as a celebration but until then .. A review.

From this ....


to this .....





























Not only that but our friend Ella in Singapore turned one two days after Harrison. She too is immune deficient but not ADA deficient and was lucky enough to come home from hospital in time for her birthday - Yay !!!! Good going Ella!!

Meeting New Friends...And then there were 2!

We were lucky enough during the start of the new year to meet - over the phone at least another little ADA-SCID boy's mum. They live in South Australia and this little boy has not had a bone marrow transplant but is on the enzyme injections and is doing fantastically well on these - And so there were two!! ( In Australia at least ) :)