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.

Progress - slow but steady wins the race.

My recent posts have talked about Harrison's blood test results

I asked the Dr's to clarify what these are, and what this means in terms of a normal person.

So... Lymphocytes - a healthy 7 month old baby would have a cell count of 2.0 lymphocytes (or 2000 per ml3 (milli litre cubed) of blood. This would be the lower end of normal blood count.

Harrison's recent lymphocyte counts were 0.5 - or 500 cells per ml3 blood.

Also the chimerism (ky-mer-ism) test done to determine Harrison's bone marrow transplant function showed that t-cells were 45% female( Ella's cells) and the B-cells were at 22%.

So the bone marrow is starting to take over from Harrison's cells - but has a ways to go yet and unfortunately no great improvement in the lymphocyte counts etc.

Having said that, Harrison's count did climb a little from 0.2 to 0.5 (or 200 cells to 500 cells) so that's something.

Also the Intragam ( plasma product that has some antibody properites) has really helped too. His levels are staying up pretty well at normal levels with each months transfusion, which is such a great thing. Although it doesn't stop him getting sick, it does mean that he can have the best fighting chance at keeping well. To anyone again who reads this and donates blood , THANK YOU. It is a great thing we live in the age we do - and that the wonderful donations made can keep our baby so well.

I am so proud of Harrison and Ella - and the achievement being made with Ella's bone marrow. Of course, we are not out of the woods yet (so to speak) Harrison still has a long way to go before he is normal and can join the outside world. It is reall y hard at the moment cause he seems so well. And he is leanring to do things really well, but I worry daily that he is going to be receovered, and I worry that whole"what if the bone marrow doesn't make things right? What then?" Its a very uncertain time for us, and as summer encroaches I would love to take all of the kids to the beach and swimming - but it is still not safe for Harrison to go out yet - and so we stay home.

Also very proud of him that he makes progress every single day . As I previously noted in my last blog that he babbles now - a great achievement in itself - and today he did a new thing again (Previously he learned how to roll one way) but ... as the newspaper people arrived here doing a story about Harrison for the benefit night, he suddenly rolled the other way for the first time! What a star is my little man? I am trying to capture footage of it - so taht you can all see it - but of course most of the time I get the after shot!! Lol

Also a great deal of thanks have to go out to our friends - for all the calling and emailing to make sure we are ok, and keeping us sane when the isolation would have otherwise driven us nuts! You know who you are - and you are worth your weight in gold.

Another day another doctor

Another week has come with two hospital visits this week.

The first was tues23rd Oct - to see the surgeon about the abscess on Harrison's bottom. Harrison has had this abscess since 5 weeks of age. He is now 7 and a half months old. It keeps closing over, refilling, bursting and then closing over again. It is often painful to him for me to touch it - as he mostly screams if I do.

After the bout of hospitalisation with his central line infection adn the 4 medicines he got for that the abscess seemed to be healing. However I noticed Monday that the little heads are forming again and his bottom is quite red again. Dr Harvey took a look and has decided to lay it open. I am worried what they will find when it is done, particularly if it is something more than just the surface abscess they seem to think it is.

Further, Harrison's lack of immune system can lead to serious infection - as the operation will leave a large open raw wound area right next to his anus. Not a great spot at the best of times, let alone for a kid with Harrison's immunity issues. He healed ok when they did the surgery to place his central line. But that was a 1 cm cut and not a great deal of open wound. I am frightened this will not be so successful, but the surgeon (who has delayed this surgery now 4 times) feels it is a calculated risk but worth doing now.

So this Friday we go to Gosford hospital for IVIG (Intragam - antibodies transfusion) again & then next Wednesday 31st October we go into hospital again for the surgery.

Tehn as I think I've said on the 6th we have the eye test review - which I am also worried about and then 9th hearing tests.

On a plus Harrison is rolling from side to tummy with assistance and he is babbling dada - why is it that dad always gets the first "word" - Ho Hum!

I will add a picture of him in the next post. Kids are all screaming at each other and I am close to having a melt down. Its been a very stressful week - one that I don't see getting any less stressful. ( That and we haven't yet had as many ticket sales to hte benefit night, and that is starting to worry me too. )

Thank you to all of you for reading this site. I love to see that we get lots of returning and new visitors alike.

Hospital visit number...

I have actually lost count already as to how many visits to hospital Harrison has had. Wednesday was a check with the immunology team who a happy with the weight and height he is. Even though to me he seems small in comparison to Marlie, Sterling & Ella, Harrison is holding his own.

The formula concentration has been dropped back to normal, he is now eating solids really well - But I tell you it was hard yards getting him to eat them at all.

Dairy is a no go zone for little H, and his eyes and ears, well I'll get to that in a minute.

Once we saw the immunology team, Where Harrison was given the royal treatment - Sam ( Dr Sam Mehr for the uninitiated) is my main Dr contact and he is always up for a cuddle. But then he called Dr Alyson Kakakios ( Alyson) a cuddle nazi - which I thought very funny cause he likes cuddles just as much as Alyson.. But hey she has a nickname now that she'll never live down!

It makes for a fun visit when we see the Immunology team.

Then a nearly 4 hour wait to do the eye check. They gave him some eye drops and we sat and waited in a dark room for 20 minutes once he had them in to get him "dark sensitised". Marlie was with me for the day and she was a little unnerved by being awake and in the dark for so long. The staff gave her this little pen torch with a red cap on it and she was happily shining red light everywhere.

Harrison's eyes did what the team expected with Retinitis - didn't respond all that well to the light impluses. Then they left him for 5 minutes with lights on and repeated all the tests. To me it didn't seem like there was a very big difference in the dark vs light testing.. In fact the lines that they look at seemed pretty flat ( not much up and down range from the horizontal line)

So I guess he has retinitis confirmed from this but we'll know more on the 6th November. ( Another hpspital visit)

So I now have 23rd Oct - Dr Harvey for the check on his abscess. Since he was hospitalised for the central line infection, Harrison's bum seems to have cleared up? Will know that for sure next week too. Then 26th October for Intragam AGAIN!! then 6th November eye Dr appointment to discuss the results and further testing then 9th November for the hearing test under sedation . 4 appointments, in three weeks is pretty good going and all bar one at Westmead. Lucky the car drives down there on autopilot now.

Hopefully we'll still have a car then? Trying to sell it so that we don't have to pay for a lease with the money we currently bleed from a stone! I am now, you see, on unpaid leave so MONEY is tight. Very tight, but then you don't need to be a rocket scientist to work out that we were gonna get tight on one income when we were used to living on two.

Anyway will keep you posted (LOL) as to how things r going with Harrison. The physio was happy with him the other day - so that is a plus.

benefit night flyer

I thought I should add this flyer for better benefit night info - Click on the picture to open up a larger version for printing and distribution. Plus it's a record then of the flyer and the work we put into Harrison's fundraising efforts.