Ingle Farm Soccer Club - Little Powney's Journey for Life

LITTLE POWNEY'S JOURNEY FOR LIFE
10 / 2 / 2007

ONE person has been missing at IFASC this year so far, Ingle Farm's popular C Team website columnist, player and former assistant coach, Gavin Powney is battling for his young son's life.

While Gavin is better known for his humorous recounts of C Team matches on this website, the Powney family has had to recently migrate to Sydney in a desperate bid to get a bone marrow transplant and treatment for his young son Liam.

14 month old Liam Powney was diagnosed with SCIDs.. severe combined immune disease.. in other words Liam has no T cells which form part of our immune system. Powney says "So if he was to catch a cold he could literally die from it."

I asked Gavin, who is desperately missing his friends from the soccer club, to write a few notes on what has been happening with his infant son's battle.

So this weekend, when Ingle Farm are met by St Peters on Sunday, the club will be collecting for the unfortunate Powney family. We hope to raise what we can, all donations are appreciated and will passed onto the family.

LEAVE A COMMENT TO THE POWNEY FAMILY HERE

Below is a letter Gavin has written to everyone at the club. Really brings things into perspective...

His name is Liam, he is currently 14 months old.

He was diagnosed with SCID's severe combined immune disease.. in other words he has no T cells which form our immune system, so if he was to catch a cold he could literally die from it..... imagine the "boy in the bubble" lol .. this was around June 06. Anyone who looked at him would not see any illness.

Doctors say it's a 1 in 500,000 chance that he will survive. The only treatment, is a BMT.. bone marrow transplant.

Before we arrived in Sydney, we/he were allowed to stay at home (rather than being hospital bound) because he was still very healthy and and had not caught anything, and the wife was a nurse..

We kept him healthy by cleaning his toys and the house daily, and redressing him 3 times day. We also washed our hands and arms with alcohol rub to kill any germs. He never left the house and never came into contact with other children and very few adults.

After 3 months of this and still no illness, we relaxed and took him shopping, to TTP, to the park, as long as we kept him away from kids and anyone who coughed.. and still no illness.

Finally we got the go ahead that a room was available for his transplant in Sydney, which meant packing up not only his toys and clothes but our clothes and flying out, for possibly 6 months, we had about 6 suitcases and a pram.

We had flown to Sydney back in Aug (which he loved) to meet the doctors, tour the hospital and have the process explained to us, not a good day... We left for Sydney on Tuesday 28/11 (7 days after his 1st birthday) but on the week end before we left, he had a central line put in, which enables all his drugs and bloods to be given/taken via this line, can not have a BMT without one.

When we arrived, he had a temp of 39.5 and was put on a drug treatment. It was discovered that his central line was infected and had to come out, which meant a new one would need to be put in later. Doctors advised that he would need 6 weeks of treatment to be sure that the infection was gone and then another week to see how he went off the drugs. So this put us 7 weeks behind.

Finally after all this he started Chemo this Saturday 20/1.. Yes we spent Xmas and New Year in a hospital room, but the highlight was meeting the Wiggles on Xmas day!.... And watching the cricket on a 34 cm TV stuck on the ceiling is not a good experience.... His Chemo lasted 9 days... this was to kill off all his immune cells so he has a clean slate then he is given donated bone marrow which should then regrow inside him.

His donated marrow, came off the world donor registry, and was not a full match, but doctors advised it was good enough to use. His Chemo went very well, with no real side effects, we shaved him before hand - as his hair would fall out anyway. The Doctors were happy with how it all went and we then went straight into the BMT on Monday 29/1/07.

The actual transplant was very simple, its just an infusion of a bloody type liquid, that is given to Liam via a drip, takes 30 minutes. Its not an operation or medical procedure and he is awake. It does smell and tastes awful.. so we are told.

As of 29/1 he has no immune system at all... so anything germ, bug, virus, could easily kill him. At day +1 (this means first day after transplant) he had a white blood cell count of .02... the average person has 11.00 So each day he is given more drugs to treat the effects of the BMT or any high temps or blood pressure.

He has his temperature, blood pressure and weight checked every 1 to 2 hours as everything needs to be checked methodically including the collection of nappies and their weight. Doesn't make it easy for him to sleep.... Current we are day +11 and his white cell count is up to .62... this is a good sign.

So we take it day at a time and keep an eye on the levels.... They say you should expect to see results around day +15 to day + 28 or earlier.. but if nothing by day +35 then it hasn't worked.

The days are very long and slow, we need to clean his room twice a day, so its germ/dust free.. We don't get much time to cook, so junk food is getting a real pounding, and at Sydney prices.

We are staying at Ronald McDonald House, which is good that its free, but its very noisy and we only really use it for the bed and shower.. But the good news is that we have now been moved into one of the units, which is still noisy but has its own kitchen/lounge and laundry, as we will need this once Liam is allowed to leave the hospital room , but still stay on site for daily treatment. (fingers crossed.)

I have been lucky that the ABC has let me work from their Ultimo site here in Sydney, so when its ok to, I come to work rather than use up my leave and end up on unpaid leave.... to date we have been here 11 weeks!!! So i f I'm not at work then I'm at the hospital in his small room, with a 34cm TV but at least LOST is back on TV this week.

I do get a mate to send me the premier league highlights show to watch each week.. to keep me sane... We do have the mother in-law here with us also, as we usually need 2 in the room, so we can rotate the shifts as well as let me go to work more often to earn a crust.

So that's where we stand..... if all goes well, we could be home in 8-12 weeks, if not then could be 12-20 weeks.

It may take me another 12-20 weeks to get back in shape, so my spot at LB may have to go to Jason Ogdon, if he can get in shape, and if I don't get to play then maybe keep my no3 shirt in mothballs for season 2007.

I've written a lot, some which may be confusing.. feel free to ask questions for anything you don't understand. My email is POWNEY.GAVIN@ABC.NET.AU

Good luck to all teams, in what should be a great first year in Div one.... but has the league asked anyone to remove the slope from the pitch as we are now playing in the top level???

And WHO'S RUNNING THE FOOTY TIPPING THIS YEAR... ???

Gavin.

LIAM UPDATE
15 / 2 / 2007

Hello All,

Up to Tuesday night Liam was doing very well. His white cell count had increased from .02 to 2.12 by day 15…

Wed morn he had a temp of 39.1 and very bad diarrhea. He was put on some anti biotic's to bring his temp down and is much better. He may need a biopsy on Friday to look at why his diarrhea is so bad.

His white cell count has dropped to 1.04 due to the infection, they may have been trying to fight the infection..

Hopefully its only a slight set back.

LIAM UPDATE
22 / 2 / 2007

Hello All

Liam has had an infection for the last 5 days now… high temp, high blood pressure, some vomiting and high breathing rate.

Doctors were unable to identify the infection, as chest x-rays were unclear.. He was due to have bronchopathy yesterday (they put him under, and fill his lungs with fluid then drain it and examine the results.

He had to wait for free time in ER for this procedure to take place, hence we had no time frame, then just as we were told we should get him ready to go down for 4:00pm, the Doctors came in and advised what the infection is… thus no procedure was required..

The bad news, is that he has Influenza B virus, who knows how…….which is not good. He is know on some anti biotics to try and treat this, which could take anything up to 2 weeks. Good news is that even though he has had the infection for 5 days, there are signs that he his body has been trying to fight the infection, and thus slow his white cell count rate, but still slightly increase each day.

So now its another waiting period to see how the new drug goes….

LIAM UPDATE
26 / 2 / 2007

Hello All

Today marks 13 weeks since we arrive in Sydney…. At least we've had some rain this end…

Liam has now had Influenza B for the last 6 days, and possibly some "graft versus host" virus, which is the body fighting the transplant

He is still on anti biotics to fight the Flu B and some steroids to fight the GVH virus…. Adding to his already 4 or so other drugs that he has flowing into him daily. The draw back on this is that he is taking on too much fluid and his weight is increasing too much, which effects his breathing, heart rate and blood pressure, so he has another drug to try and make him pee more….

Currently he spends most of the day sleeping and when awake is very grump and touchy. He still has his obs done every hour, which makes him even more grumpy. The good signs are that his blood counts are climbing, and that he is fighting the Flu B, without the aid of extra oxygen or having to go to ICU.

Our days are measured by his blood results which we get around 9:00am showing how his white cell and neutrophils counts are, if they go up then it's a good sign, but done is the opposite. We have charts on the wall plotting all these so we know where we are at, and a list of all the drugs so we know whats given and when.

Because he has the Flu B, everyone who enters the room needs to wear a gown and mask, so they don't catch anything that they may give to other patients on the ward.

By this stage I have learnt enough to be a year one nurse, and can nearly pronounce some of the drugs.

Sydney TV shows bugger all AFL ,and when it does its on at 10:30 at night, but at least Ugly Betty is on….!

So that's where we are at, not much chance of being home for Easter, and with 22 players in the C's, prob not much
chance of getting a run either, but I do know coach Scotty loves a beer.

LIAM UPDATE
13 / 3 / 2007

Been here 15 weeks now and its day 42 after transplant.

End of last week we were possibly looking at moving out of his room and into our unit at Ron McD house… Then, I caught a cold, and possibly so did he, even with me staying away for 4 days…

We've now been moved to another floor, for infections/diseases, sounds bad, but its not…

Although, this new floor is like going from a 4 star hotel to a 2 star hotel, the nurses are shocking for the care we require for Liam. Anyway.. He is back on more anti biotics to treat his new bug

Doctors say his BMT graft has taken to 80% at this stage, 100% may take as long as a year, if ever, but this is till a great sign.

His current problems are the bug, his weight is too high (too much fluid intake from all the drug treatments and still not eating. While he is happier, he still has a lot of grizzles and cries and only wants his mom. His cell counts are still stable without the aid of any drugs, another good sign.

Our weekends are very long and boring as we try to keep him occupied and keep his room clean
and germ free.. and the wife has this 6 days a week.

All going to plan, maybe another week in the "room of doom" and possibly back to RMc. This leads to us having to clean the unit with a fine tooth comb, with every germ killing spray know to man in order for
Liam not catch anything, and give us piece of mind in letting him sit on the couch.

Each day now seem like a week as time crawls along……. But there may be light at the end of the tunnel

LIAM UPDATE
16 / 3 / 2007

All

End of last week we were possibly looking at moving out of his room and into our unit at Ron McDonald house… Then, I caught a cold, and possibly so did he, even with me staying away for 4 days.

We've now been moved to another floor, for infections diseases, sounds bad, but its not… Although, this new floor is like going from a 4 star hotel to a 2 star hotel, the nurses are shocking for the care we require for Liam. Anyway.. He is back on more anti biotics to treat his new bug Doctors say his BMT graft has taken to 80% at this stage, 100% may take as long as a year, if ever, but this is till a great sign.

His current problems are the bug, his weight is too high (too much fluid intake from all the drug treatments and still not eating. While he is happier, he still has a lot of grizzles and cries and only wants his mom. His cell counts are still stable without the aid of any drugs, another good sign.

Our weekends are very long and boring as we try to keep him occupied and keep his room clean and germ free.. and the wife has this 6 days a week.

All going to plan, maybe another week in the "room of doom" and possibly back to Ronald McDonald. This leads to us having to clean the unit with a fine tooth comb, with every germ killing spray know to man in order for Liam not catch anything, and give us piece of mind in letting him sit on the couch.

LIAM UPDATE
20 / 3 / 2007

Guys..

Over the weekend we moved from the Infectious Disease ward back to the Transplant Ward… which is a great relief as the ID Ward was a shocker in terms of care for a BMT patient. Liam has now battled his way past a second bout of influenza, which is why we can return to our original ward. He's a strong little boy...

Liam's current main concerns are high temperatures, which come and go, with no known reason, colouration of his poo and vomiting (mainly of flem). These are what is keeping him in the confined room.

His blood counts (white cells, neutrophils, platelets and haemoglobins) are all with in (or close to) the required ranges for him to be allowed out of his room for overnight stays with us in our Ronald McDonald Unit.

This is the next step in getting him out of the room for good and becoming an out patient. All signs point to 85%
grafting at this stage, with no rejection by his body.

Once he becomes an out patient, it's a new ball game where he will require daily/weekly treatment to ensure his progress, with prob the first 6-9 weeks being in Sydney still, as they have the experts and facilities.

So even though its slow, progress is good and hope to be home in time to watch Utd win another FA Cup in May.

LIAM UPDATE
29 / 3 / 2007

Guys

17 weeks have now gone by and we are at BMT + 58. Liam has been getting over a 3rd virus, which looks like it has now gone. A nasal specimen was taken and results show no Influenza A or B or similar viruses.

His blood counts are all within the require ranges except for his Platelets, Magnesium and Albumin levels, explanations below

Now that his temperature is back to normal, we may be able to take him out of his room for an overnight stay in the unit over the weekend, and then build on this…

He's still on a few various drugs as well as infusions for the above 3, until his levels increase. He is yet to eat, which is normal, so he continues to get his nutrition via his nasal feeds

He still has some diarrhea, which is improving, and the occasional vomit due to a flemmy throat.

A return date, well could be anything from 6 - 12 weeks, and that's after we get out of the hospital… So its still watch, wait and see, while keeping him happy and entertained.

At times it's very hard, and there was a death in the ward on Monday, and although you don't know the parents, other than passing them in the hall or a chat in the kitchen - it still brings home the message of how lucky we are that Liam has gone through all this as well as he has….and that there are others who don't have it as lucky.

Gavin.

LIAM UPDATE
4 / 4 / 2007

All

Liam had his first outing on Sunday (1/4), after being stuck in his hospital room for 78 days straight. After signing him out for a couple of hours, we strolled down hill to Coogee beach with Liam in his pram all rugged up. Coogee is a tourist paradise, full of back packers, eateries and pubs, which made for some interesting steering of the pram as we tried to avoid anyone who coughed or sneezed as we made our way to the beach line.

Liam was very concerned about what was happening, and didn't really look happy until about an hour into the trip when he was out of his pram and with his mom for a few pics. The trip back was much harder, as it was all up hill, but he looked more comfortable, pointing at trees and cars before falling asleep.

It was good to finally get out and have him see the blue sky again, even if we were nervous and very conscious of everything around us, ie, animals, bins, car fumes, people etc, things we normally take for granted. This is our first step in getting him out of hospital and into our Unit at Ronald McDonald House.

At this stage he still has temp and blood pressure problems, which are holding us back. The next 48 hours will tell if the trip out had any effects on him….

I'll send some pictures of the day out once they are downloaded.. stay tuned.

Happy Easter to all….

LIAM UPDATE
16 / 4 / 2007

After 20 weeks in Sydney ….and 75 days after transplant…

Liam came home (well 2 nd home) on the weekend, and is now with us in the Ronald McDonald unit.

Its very squashed, but we're happy to finally have him with us 24/7, although he still goes back to the hospital each Mon/Wed/Fri for blood tests and checkups.

Each day we have to give him 8 diff drugs via his nasal tube, every 8 hours. These are to help his bloody pressure, reflux, stop chest infections, thrush and to make sure he doesn't get any graft v host infection (ie rejection of the morrow) He is still on nasal feeds, and still has the occasional vomit, but is starting to look interested in eating

He's already been outside on his bike and worn out a pair of shoes pushing himself around the car park, and we've taken him out in the pram for a few strolls. He is much happier and is starting to notice such things as birds, planes and cars. Its harder to keep him occupied as he wants to move around all the time and be picked up He wont sleep in a cot, so he sleeps on the couch.. the whole couch with 4 pillows

We still need to clean the unit and his toys every day to minimise the chance of him catching anything, as we don't want to have to go back to hosp via the emergency room. One of his drugs “cyclosproin” is required for at least 100 days, so its possible that we will still be here for at least another 4 weeks, if not longer. (this drug has a side effect of hair growth, which you will see in the picture, but will drop out once hes off the drug)

So if things go to plan we may be back by mid to end of May hopefully

LIAM UPDATE
23 / 4 / 2007

Hello everyone …

Big thank you to all who turned out on Sunday for the Farms first home game back in Div 1.

Things are going well this end , we have an appointment on Friday with the BMT Specialist to get and idea of when we can return to Adelaide. If there is no need for the specialist treatment here, then we may be home within 3 weeks, but still with visits to the W&CH in Adelaide each week

So fingers crossed for Friday !!

Rumour has it both C Teams are chasing me … to run the line!!!

LIAM UPDATE
3 / 5 / 2007

All

Liam has another appt with the Transplant Doctor on Monday. This is to determine if / when we can reduce his drugs and return to Adelaide.

He has been out of hospital 3 weeks now and his blood counts have not dropped.

11/4

30/4

Haemoglobin

96

105

White cell

8.33

11.29

Platelets

236

380

Neutrophils

4.0

5.60

Although he's still on his nasal feeds and 7 drugs, he's had no ill effects or fevers.

All going well, they may give us the go ahead to return within 2 weeks !!

So I ' ll fill you in next Tuesday.

Gavin

LIAM UPDATE
7 / 5 / 2007

All

We were due to meet with the B M T Dr today to look at a time frame to return but yest afternoon he came down with a temp of 38.5 so we rushed him to Emegency. Being a BMT patient, you do get seen straight away.

So after 3 hours in the triage room and 3 diff drs, his temp, breathing and pulse came down some, and we were admitted back in to C2 West (our original home fro 4 months) for some drug treatment and observations.

He slept well overnight and his temp is back to normal, but he has an elevated white cell count which means he has caught something, which is now being treated with drugs, Drs have now seen him and he will stay on C2W till Wednesday where he will then be re-assessed.

Until now, everything has been per f ect, how easily things can change

This will mean out return time frame is now up in the air again … .

Stay tuned …

LIAM UPDATE
12 / 5 / 2007

All

Even though Liam is still in hosp, test have shown he now has 3000 T-cells, that's 2999 more than he had pre BMT

Drs are very impressed that he's got so many while still on Cyclosporine (drug that stops T-Cell growth) and the fact he

had a cord transplant , which usually takes longer to show growth…

He should be back out of hosp on Thursday and if alls well re look at our time frame for a return.

He still has a slight temp and heavier breathing but all else is good….

LIAM UPDATE
15 / 5 / 2007

All

Had another meeting with BMT Dr yest… (after 24 weeks)

They are happy with his progress but now concerned about the colour of his poo (currently a dark green)

His penicillin will be stopped and Cyclosporine reduced to 40%, and we will have another meeting

this Thursday (17/5). Once they are happy with progress it may be just a week or 2 until we can return home

He's in very good spirits but hates being kooked up in the Unit all day. Hes still on 3 bottles of nutritional

milk a day, which will continue for about another 6 months or until he learns/wants to eat again.

So I'll be watching MAN UTD win the FA Cup form Ronald McDonald House this year…

LIAM UPDATE
10 / 6 / 2007

Hello all

Been home 3 weeks now.... and its getting colder..

Liam is doing well. still on 6 different drugs, which are slowly being reduced. We hope to be off the major drug in 5 weeks (this is the one that helps stop any BMT rejection). Once this has gone then the others can be reduced or stopped He has a lot more hair, but still has extra hair on his back face and arms, which will eventually drop off. We give him all his drugs at home at various times of the day, the kitchen bench looks like a chemist.

He's still on 3 daily milk feeds via his nasal tube, as hes not eating.... but is having some milk via the bottle now. Could be a while before he starts to get an interest in eating, espec foods that are nutritional for him.

He's happy with his extra space around the house and getting into all the cupboards, and throwing his toys around the living room. He loves to walk around and get outside, but is restricted when hes on the milk pump and pole that has to follow him during feeds.

We take him to the hospital once a week for blood tests, anti body infusions and check-ups to make sure everything is on the right track. We wont have any real idea of how far hes come until hes off the drugs and his blood tests are then based on what his own body is producing. This could 12 months down the track.

But, hes far better off than what he was pre transplant and we have all our fingers crossed

Its good to be back home and back at the club.

Will keep everyone updated with future developments and if the weathers kind, try and bring him out to a game