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 ) :)

Back & Forth - Christmas , New Year, Jan - Feb

Over Christmas Harrison had an infection in his central line, and they Used Vancomycin antibiotics to treat this. Now for those of us out there who have immune deficient children, you will know ( and most likely love) this stuff.. However in Harrison's case this is not working. The doctor's are ordered daily cultures to be grown from the central line lumens ( his dangly lines hanging from his chest). They take blood and basically culture it to see if it grows anything, and despite all good effort, this was still happening. So a decision was made to transfer us down the Westmead Children's hospital, so the staff there could acidify the line and hopefully clear the infection.

Yes, this is just as scary as it sounds.Acidification is the process of injecting Hydrochloric acid into each plastic lumen and leaving it for 10 minutes, then aspirating (sucking the acid out of) the line and then flushing with saline to clear the line. This process is then repeated 20 minutes later and then a third time. The plan is to kill any bacteria in the plastic. It is actually a very interesting process.
And so the process began, by cleaning the outside of the line, injecting the acid, aspirating, flushing and then redoing the process 2 more times - 20 minutes after the last time. The whole process takes about 1 and a half hours. The acid when aspirated, comes out as a brown (almost rust coloured) gunge - lovely!!! :-) Then we were transferred back to Gosford, so that 24 hours after the acidification, the lines again had bloods taken from them and cultured to see if any bugs grow. Of course, bugs still grew - Nothing Harrison does is simple after all!! Normally at this point the bug woudl mean central line removal BUT we went for a visit to Westmead again on the 16th Jan for the BMT team to review Harrison. They drew bloods fromthe white lumen as it was uninfected and decided to do a Vanco lock ( Vancomycin antibitic injected into lines and left for 24 hours and changed 2 times) - This which actually worked. Acid can't kill it but antibiotics finally did. In the end we left hospital the week before school started for Marlie, on the 23rd jan but weren't officially discharged til the 25th.

So we were lucky to save the central line as Harrison still has to undergo IVIG monthly - locally at Gosford Hospital. We are becoming almost part of the furniture there these days!!

Of course all of this and some added financial pressure saw Scott and I separate - which was my decision and we have been working hard to see if we can resolve things. Scott is trying very hard as I am - with much counselling on my part to resolve issues I have re Harrison's illness and my guilt over it all. Its amazing how when you are feeling down that you take it out on people closest to you. I'm not saying that I am an angel or Scott either, and we both have things to still work on individually, but we are working things out which is very positive.

Marlie started "big" school on 31st January and so it has been a bit of an effort getting her to and from school with no car - lucky mum moved closer so we often go there and get her before or after school - not such a far walk - which is ok for Harrison as long as I can keep him out of the sun due to the Bactrim antibiotics, or the rain - bad for his chestiness - he has a chesty rattle still since January but it hasn't worsened luckily.

In January they did a lot of testing and found he is about 60% of the way transplant wise but the B cells are very slow to respond ( the importance of B cell s is to make the immunity) And the toxic metabolites went back up a little - which is not so bad but if things don't drastically pick up in April then we are still not out of the woods yet for a second transplant.

Also Harrison has epilepsy - two types actually which is hampering his efforts in development a little ( not much but still...) He has ATONIC seizures - he loses complete muscle tone and literally drops to the floor. This last all of a second and he gets up and keeps going. I thought it was just his funny crawling style for a while but then we had a paediatrician review and he asked about it. Needless to say that when he stared on Tegretol for this it stopped happening and he crawls quite normally now. With the slight exception of hitting his head on walls and furniture - he doesn't look up very well so uses his head to let him know when he has reached a point of no return. not pretty as he ends up with quite a few lumps and bumps and bruises on his head - but he has not given himself any serious damage yet so I will keep an eye on him or just lock him in a padded room!! :)

February was reasonably uneventful - just lots of Chiro and Physio to help Harrison with his development. He carries his head tilted to the left - its very obvious and most of his photos show it to a degree, and all the treatment has helped a little but he is still got a ways to go with this.

He has also learned how to stand. He is getting quite good actually, although he tends to get up on his toes, wobble the hips ( Elvis style) and then fall to the floor very ungracefully) - But he just smiles ( or has a sook, then smiles) gets up and tries again.

The central line has stayed clear now since January and we have come to March. ... Ha ha next post for the March bit! Last lymphocyte count was 0.7 - up from 0.5 but no where near the 4.0 we'd like it to be!!

Testing, testing ... And Christmas in hospital.

Harrison as you now know has epilepsy, but in the investigations to find out if there is changes to Harrison's brain causing this epilepsy, the doctors did an MRI, which showed a lump at the base of Harrison's head, so then a CT scan was done to determine if the lump was on the brain or on the skull.

As it turns out, it is on the skull. So Dr Webster felt it would be wise to follow on with a bone scan (I think just to be safe) but said not too urgently. All this in the last three weeks, and the bone scan (nuclear medicine scan) was brought forward suddenly and conducted Monday 17th December, to see what they could see. They saw plenty....

Now the lump there is visible, showing as a little "hot spot" where the dye they injected showed up. As to what this is we are still unsure, but the doctors feel it is not cancerous - but have said they still need to do more testing to be conclusive. In their words, "we're not out of the woods yet".

So we are next down at the Children's hospital on 16th January 2008.. OMG only really three weeks away, for a Bone Marrow Scan and for the long awaited bone marrow transplant review.

Only time will tell we guess, as to how the BMT is going and what this next scan tells.

In the mean time Harrison had intragam on Friday 21st December , and two hours after leaving the hospital from this we have been readmitted. Harrison has a central line infection - again. (This time not from chewing on the darn thing though). The line has been accessed by that many different people for that many different reasons over the last month that anything could have happened, and because these go straight into a main vein when they become infected the infection goes immediately into the blood stream. Now for this and Harrison's SCID - well simply it equals a major temperature, and this time a convulsion (which scared the living be-jesus out of me) , then a rushed emergency trip to the hospital for treatment. ...

We don't know why this time, but the bug is fairly resistant and he is on strong antibiotics to hopefully kill off the bug and save the central line. If the central line can't be cleared then we run the risk of having to have this one taken out and a new one inserted.. Which would mean another anaesthetic and hospital stay.. Although we are already in Gosford Hospital - Children's ward for a week of treatment now anyway so what's a few days added on for this? :)

So again we wait, and hopefully Harrison gets better, but I can honestly say this time he is really sick.. He is not the world's best sleeper, and pretty much all he is doing is sleeping now.

So the next blog will be all about Christmas .. I have gone back and added pictures to the last few blogs, and I have added some cool ones of Harrison having his testing done over the last week or two!!

Selling our car... Going, Going, GONE!!!!!!!!!!!!!!

Well the car is sold. It went on Saturday 22nd december.. So we are now officially carless. OMG - have no real idea what we will do without a car ( not that we go very many places) but the freedom of having a car has now gone! It was very sad watching my baby drive away, ut the family it has gone to are lovely so I wish my little AlQ all the best for his future!!







The time has come to sell our car, and so it has been advertised.

I thought I will add a picture or two of it here in case anyone out there reading Harrison's blog wants to buy a good car, at reasonable rates!! :)

Anyone interested tell them to call 0412403739 or email browntl75@optusnet.com.au