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

A n apple a day didn't keep the doctors away!

Harrison has had quite a lot of testing lately. Due to his being ADA deficient he had a 50 % chance of developing neurological problems - ie brain damage as the enzyme is not there to make the brain function properly. I thought we were looking like things were clear, however Harrison has developed epilepsy. Now I am not upset by the epilepsy part of things but that this means there is damage.

I cannot help now but worry what this means for his future. Harrison seems blissfully unaware or uncaring even. so that helps us stay focussed on the good things happening. but as always we will keep you all posted!

So we headed back to Westmead and have had in the last two weeks, another MRI, Lumbar Punchure, EEG x 3 and a CT scan. The doctors have found something on the CT and MRI at the back of his head. and so they are now wanting to conduct a bone scan. I hope they find nothing but each time he's had a test lately Harrison has then had to undergo another
. Time will tell. It feels a bit like a blow in the guts though - as we seemed to be cruising along and now this. I guess this will be us for a while.

Harrison is now 9 months old. He is almost sitting, and is up on all fours trying to crawl - but usually manages only a backwards push getting stuck against the lounge, or under the coffee table. I spend a lot of my day "rescuing " him. But we are so happy with this progress. He is 8.7 kg and wearing size 0 so he's feeding well.. Although he's not keen on ANYTHING that is not fruit based or custard or sickly sweet oatmeal. Or lasagne which I have to make specially for him to ensure its dairy free - His bum is smelly enough without adding the dairy intolerance to it!! Lol

Ella is in for her tonsils to come out next week.. They are huge she talks funny all the time now and we cannot afford Harrison to get sick. He is still immune deficient and the bone marrow is taking its sweet time to kick in. In January on the 16th we find out how this is really going.
I am sorry for the lack of pictures, these will be updated and added shortly.

Its getting close to Christmas. For the first time we will not have a santa photo with ALL kids in it .. Lucky for me I am getting good at photo shop!!

But we've done our best to make the house look Christmassie. I met a baby in Singapore called Ella - she's doing well but will be in hospital for the holidays.

Anyway Harrison is going great guns barring a few minor technical difficulties!! He's really developed into this happy kid.. Truly one of ours. And he's by far and away the cheekiest one of the lot. Gawd help me when he's three - cause he already tells me in baby talk what he wants now. & I am sure he's mimicking everything I say - no teeth though so he's still got this really gorgeous gummy grin.


Below is a link to another scid kid. Boy called Logan. He's a little cutie. :)



http://littlelogansblog.blogspot.com/

Fundraising

Well we have finished this years fundraising and I have pictures galore to attach -

Firstly the raffles & grandfinal day - we have many friends & family who have blessed us with their help and support. Donna arranged t-shirts for these fundraisers, and they are cute - we have below Lynne & Gabrielle modelling them at a raffle day ....

The t-shirt has a picture of a teddy bear with writing that says - I am helping HARRISON DRAPER with his fight against ADA-SCID.

The raffles were quite a success - and the Grandfinal day raised $30,000 in profit - not a bad days work really!!

The golf day was next on Monday 8th October raising about $10,000 and this will likely become an annual event.Brett Kenny was the guest speaker and Doug Keen of the NRL development MC'd. We were lucky enough to have local business sponsorship for this day..We had about 100 players with a buffet lunch following the golfing.





Finally the benefit night at Gosford Racecourse. We had a lovely view of the floodlit racecourse... 170 guests, 3 course meal, flowing beer & wine and a great night.
Guest speaker Stuart Dickinson of the Australian Rugby Union - he is a ref, and recently is back from the World Cup. Doug Keen MC'd again and was also part auctioneer with Ashley Knight a local real estate agent.

David Proust did a fantastic comedy act warming up the crowd for the auctions.
Rather than uploading hundreds of pics though I did a video of the night.....


We have truly been blessed by the help & support of friends, family and business alike and without this support our success in these events would not have happened.

THANK YOU...... :)
next post will be an update on Harrison's bone marrow transplant progress - we are just waiting on some test results.

Autopilot

Its been a while between posts. I've been living life on the freeway in autopilot mode. I think the car drives itself to the hospital now - and I can do it sleeping - or in a major traffic jam when trucks collide with cars and you have to leave 2 hours earlier than expected, just to get there in time!!

Harrison has had quite a few visits etc to the hospital. So in order to bring things up to date I will list what we've been up to - then I will add pics next time!

Events: Golf Day on 8th October was a great success - Brett Kenny was the guest speaker for the day. Lots of pics from this to add later

Benefit Night at Gosford Racecourse - 10th November was a massive night. I got to go to this one too - and I can honestly say we had a fantastic night. We had Stuart Dickinson from the ARU Referee's guest speak, a fantastic guy called David Proust do a comedy act and Doug Keen from the Rugby League - Referee's development officer as MC. Ashley Knight a local real estate agent helped with the auction. Also lots of pics to come!!

Hospital stuff:
Last Intragam was 26th October - next one due 23rd November at Gosford Hospital - which will also be the next set of blood tests to see how things r going.

*31st October - Operation on abscess at Westmead Children's hospital - was ok but they could not find where the abscess started so it may reform - so far so good though - it seems to be healing .
*6th November - Eye Dr Rowe review. Retinitis is now confirmed with a minor change in the retina since Dr Rowe saw Harrison on the ward in July. He is short sighted so will need glasses at some stage, and the nystagmus continues but is intermittent. Review now set for 9 months time unless he has a dramatic change before then.
*9th November - Hearing test @ Westmead under sedation. Harrison did ok with this but they couldn't test full range. No change with some hearing loss just outside normal ranges , so hopefully this won't change anymore and he'll go on to lead a pretty normal life hearing wise! 3 monthly reviews will continue though to be sure!! ( Did that sound Irish? - Sorry!!! )
*13th November - review from surgery - all ok & seems to be healing - only need to see Dr Harvey again if things don't heal properly.
*16th November - review with BMT (Bone Marrow Transplant) team - I am excited about this one - definitely want to know how things R tracking.. Will keep you all posted too.. :)

So things are steady at the moment - we are watching his ears as they are both a little red, so hopefully no infection occurs. & I can have a little rest from planning events. Although I had such a good time the other night I sort of can't wait for it to happen again! (Next year anyway!! :) )

Harrison has also reached a milestone - He is now rolling from back to front ( still one way though) and pushing himself backwards. The beginning stages of crawling - which I am very impressed by and no doubt he will continue. I am watching carefully and working him hard to keep his left side moving as he is a not using his left arm or hand as much as the right - but so far so good.

And finally - Ella had chicken pox. And luckily for us Harrison has shown no sign of contracting this.. Now don't get too excited though, as it is only through the miracle of Intragam (plasma product with antibodies) that Harrison stayed well - as this would have contained chicken pox antibodies - and he had the last dose of that the week before Ella broke out. So we are very lucky that this happened when it did and Harrison ( and Marlie & Sterling too) stayed well.