History

Wednesday, June 23, 2010 4:08 AM CDT

Well bags are almost packed, our big journey starts tomorrow. Plane leaves around 7pm NZ time heading to LA, we stay a night in LA then head off to camp stopping off at washington then go onto Portland Maine.
United airlines have kindly upgraded us to first class and given us some red carpet passes, pretty excited about that.
Well I will update when we get back see you in 18days

Monday, May 3, 2010 11:31 PM CDT

Hey all hope everyone is well and adjusting to the cooler weather.
We had a busy month last month with 6 hospital appointments and emergency surgery chucked in to keep me on my toes.
Ryan is well he still has the usual moans and groans his ankle is playing up,sore stomach and headaches.
He still loves his clothes and shoes, loves to shuffle and is getting good at the electric guitar.
We are well under way for our fundraising with a big night next weekend, it will be good to attend the FA camp and meet new people like Ryan.
I hope our friends from 27B are well xoxox

Thursday, April 15, 2010 5:01 AM CDT

Hey there its been a while since I have updated, Ryan is doing well still seems to have lots of different appointments but generally things are good. He likes to slip the odd emergency surgery in (easter weekend 10.30pm)to keep me on my toes.
We are hoping to attend the Fanconi camp in America late June this would be great for Ryan and I, now hes entering his teenage years. We have been busy approaching places for donations and we are holding a fundraising evening in May fingers crossed it all goes well.
Other than that Ryan still loves shoes,clothes and himself lol hes grown quite a bit hes now 133cm and nearly on the 3rd percentile line (never been close to it). Well must keep sending emails, will post how we did after the fundraiser.
I hope all our dear friends from 27B are doing well

Monday, January 18, 2010 11:55 PM CST

Happy New Year everyone.....

Ryan has had good results from the growth hormone he is now 131cm, so about 8cm in total since April 09.
We had a good Christmas but on boxing day Ryan went down hill with pain in his ear and head, doc thought it might be a ear infection. As the days went on the pain was getting horendous, finally after a second visit to hospital we found out he had shingles, no wonder why he was in so much pain poor kid. He has now recovered and doing well.
We are in the process of seeing if we can get some funding to go to America to attend the Fanconi camp in Maine this would be such a awesome experience for Ryan to meet people like him, will also be really good for me to learn more about FA and what lies ahead for us.
I hope everyone is keeping well and a big wave to the 27B clan.

Tuesday, October 13, 2009

Gosh its been a long time since I have updated as you can guess things are going well for Ryan.
Last week he needed oral surgery he had 3 extractions,4 fillings,1 crown,sealants,xrays,polish and fluoride. Its like having a warrant of fitness hes good for another 6mths.
We were at ED about a month ago with suspected Appendicitis, well they werent to sure but it has been getting worse so now it looks like we will be referred to hospital to see whats going on. Hopefully it wont be to long as I need some answers before it starts playing on my mind more than it is now.
Hope everyone is keeping well xoxoxox

Sunday, May 10, 2009 5:23 AM CDT

Watch this space!!!!!!

Ryan has started his growth hormone he had his 4th injection tonight and hes already wanting to measure his height.
Everything else is going well for Ryan hes started learing the electric guitar and loving it.
Well hopefully i can post in the next few months some growth results.

Friday, January 16, 2009

HAPPY NEW YEAR!!!!!!!!!!

Gosh Christmas and New Year have been and gone time is flying by so quickly.
Ryan is doing really well except hes discovered Hallensteins,skinny jeans,the colour black and checkered shirts thank goodness hes in a uniform this year haha.
We have oncology checkup in 2 weeks and hes going in for surgery that week as well for ENT.
We also got Ryans results back from the growth hormone test and they said they want to re apply for growth hormones so not sure if he has completely stopped growing or just slowed right down.
Hes doing well and no complaints he had a week with camp quality last week and had a blast as always.
Hope all our friends from 27B are doing well.

Take care

Wednesday, December 10, 2008

Well last Thursday we had the growth hormone test done, the nurse missed his vein the first time and made his vein bubble Ryan said a naughty word when that happened. Second time they got it and after half a day in hospital we came home,we should have the results in a few weeks.
Ryan has alot on at school for his final year they have alot of trips and then a social to finish of the year, hes off to intermediate next year.
Other than the usual aches and pains every night (do they ever go away)hes doing well.

Hope everyone has a great xmas with their familys

Janine xoxoxo

Thursday, November 27, 2008

Gosh we have nothing happen for ages and then theres a rush. We had our wee stay in hospital with the leg issue, then the week after that we were at Waitakere hospital with an eye infection, next week we have the growth hormone test this will take half a day. They put a line in his hand they give him some medicene and take blood at certain times to see if he is releasing growth hormone.Hopefully that will be it until January when we have our next appointment.
Hope everyone is getting sorted for christmas
xoxoxoxox

Saturday, November 8, 2008

Hi All,
Gosh we have had no hospital appointments for ages and now we have had 4 in 5 days.
Last week we had haematology for bloods and check up, all is good. On wednesday we had endocrinology Ryan has stopped growing they are looking at going back on growth Hormomes again, if any FA families can pass on any information from their own experiences i would be very grateful. Then on Friday we went to our GP to get Ryans leg/hip checked out and he wanted it checked out by the hospital so 8 hours in ED then they wanted us to stay in the night, they arent sure what it is but we are on leave and return on Monday for a bone scan. Of course with all the waiting around and bed rest for Ryan most of the symptoms have gone as it always happens....lol
Hope everyone else is keeping well

xoxoxoxoxox

Thursday, October 30, 2008

Well I must be relaxing went for our 3 month checkup today and left the hospital without asking what his counts were.
The thing that does sux is the emotional and physical scars these kids are left with. Ryan had a meltdown today in the blood clinic and took off, no amount of calling,coaxing,demanding was going to stop him, eventually with his mother hot on his heels he came back.
Other than this little hickup things are excellent.

Tuesday, September 23, 2008

A big hello to everyone,
Not much to update on the medical side as Ryan is doing well and out next appointment is still a month away.

I guess you have seen Ryan standing proudly next to his framed Indiana Jones Hat.
Ryan and I were guest speakers at the Koru Care Charity Auction, this was to raise money for the next trip to America its there 25th Anniversary and they are taking 50 kids away. Ryan and I both got up on stage and read our speech in front of 300 people.
During the night they were auctioning of the goods and one of them was this framed Indiana Jones Hat, a table kindly put in a offer and said if all tables matched the offer they would gift it to Ryan.....well you could imagine the look on his face when he was told it was sold and going home with us. Thankyou to everyone at the charity dinner.
Of course the first thing he tells everyone is what is hanging on the wall.
Hope everyone is well xoxoxoxox

Wednesday, August 20, 2008

Well its about time I did another update. Things are going well and Ryans health is great.
I have updated with some new photos, on August 4th we went to Fiji with Nana and Grandad and had a brilliant time.
Ryan spent alot of time swimming he loves the water, I think he was making up for lost time. We had beautiful sunny hot days so someone had to eat,swim and sunbathe :)
Thats about all around here things are fairly normal.

Saturday, August 2nd 2008

2 Years post BMT

Wow its hard to believe 2 years have passed since his second transplant. We took some of Ryans friends and went to clip "n" climb to celebrate, what a brilliant place. Just what you need on a rainy day.

We are off to Fiji on Monday hopefully we will have some beautiful sunny days, not like the stormy weather we have had here.

See you in a week..

Thursday, July 17, 2008

1 year 11 months 15 days and we are off ALL medications its been a long road but finally there is an end to the first part of the journey.
His second piece of good news is hes allowed soft boiled eggs with soliders, he has asked his oncologist this question for 2years and now finally has a YES.
PLT 176, HGB 130, WBC 10.07 NEUT 4.35

Tuesday, July 1, 2008

Hi All,

Well theres nothing to report here its all boring which is a good thing I guess. Ryan is doing well and loving being a normal child, he passed his silver medal spelling test at school so he was very chuffed. This weekend hes off on a camp quality mini camp hes looking forward to this as they have heaps of fun. We have 2 hospital appointments next month we are going about every 2 months now which seems such a long time to what we have been used to.
Thats about all to report at the moment.

Wednesday, May 14, 2008

Operation number 2 complete

Ryan had his abscessed tooth out today while he was under they fixed up a couple of things also. When I went into recovery he wasn't to happy it was his head that was hurting more than the mouth. I guess with having two operations in a week its taken its toll, his head was hurting so much he was hitting himself.
So he came out with a tooth missing, swollen lips, massive headache, sore jaw which now looks bruised, and 2 IV lines obviously 1 didn't work and the other well I don't know what they did but there was a lot of blood under the bandage and around his hand. He is feeling a lot better now which is good because if hes up to it we have been given tickets to Elton John's concert tonight from CCF.

Oh forgot to say when we were in theatre he was lying on the bed with the mask on his face there were eight surgical staff around him he was just about asleep and he said three words, I looked at the anesthetist and said "did he just say what I though he said" they all cracked up and said "yes". Just as he was closing his eyes he said "F$@# F F#@$" gave them a laugh for the day.....Nana and Grandad close your eyes and don't read that part hahahahaha

Wednesday, May 7, 2008

Hi All,

What should of been a quick visit ended up being a long day, I'm sure they have missed us and wanted us to stay.
Went for our checkup all counts are excellent everyone is like WOW look at Ryan hes looking so good. Its good for the nurses who nursed him when he was so ill to see him looking so well.
Anyway back to our long day Ryan spilled out his complaints one being he had a sore groin and testicle, when the specialist poked and prodded he nearly hit the roof with the pain. She wasn't happy and said she needs the surgeon to look at it, so up he comes has a poke and prod Ryan nearly hits the roof again and you guessed it hes on the emergency waiting list for surgery. Half an hour later we were heading down for surgery, turns out the testicle was not twisted but they did snip of the some thing some thing (the word was way to hard for me to remember haha). But before you freak his meat and two vege are still in tact........phew
So we are home he looks like hes been riding a horse for days and his throat is very sore as he needed a tube down, other than this hes fine.
Oh and we need to do surgery next Wednesday as well but this is for dental, they are taking out a tooth and fixing a few things while hes under.
Will see ya next week with the dental update.

Saturday, April 19, 2008

Post 620 days transplant

Well its now the school holidays, Ryan has had a great first term back at school fitting in well making lots of friends and doing extremely well with his school work.
The last week of school was spent at his school camp where he had so much fun, there was lots of talking about chasing girls..lol. He tried mountain boarding and said we need to get one they are so much fun. Nothing else much has happened he is being a normal kid....yahoooooooooo
I hope all our friends from 27b are doing well.

Friday, March 14, 2008

1yr 7mths post transplant

Had a check up yesterday all is going well bloods are great. Doctor has stopped the Acyclovir and now we are only on co-trimoxazole Saturday and Sunday, feels so weird not giving daily meds. If Ryan now gets sick or spikes a temp we treat him as any normal child, "normal" whats that??
His next appointment is now 8 weeks away, seems so far away lol. Ryan got lots of complements from nurses and friends on how well he looks and I would have to agree he looks great. I will post up a new picture with his ear pierced.

Thursday February 27, 2008

Hey all,

Its been a while since I have updated you all, things are going well so its all a bit boring around here.
Today is the last day Ryan will be taking his mycophenolate he is now off all his immuno suppressants........scary for me. He is still on acyclovir and weekend co-trimoxazole.

School is going well for Ryan hes throughly enjoying it. He is top of the class for spelling and reading taking away 1st place and 2nd place in the tests, in maths hes in the second top class (i did ask how much he paid his teacher as this was not his strong subject). He is very keen to learn the teacher said and has his hand up for all projects and jobs to be done.......thats what happens when you have been off school for 2 years.
He will be attending school camp in April another thing for him to look forward to.

Thats about all our news hope all our friends from 27B are all well.

Monday, February 4, 2008

Ryan was not nervous this morning when I took him to school, he was keen to get there and find his friends. He quite happily went in his room found his desk and then looked for familiar faces.

3pm he came out the door and said "we didn't do much work today" haha you can tell its been along time since hes been at school. He had a great day and was full of smiles.

Thanks for checking in.

Sunday, February 3, 2008

Tomorrow is another milestone met....Ryan starts school.
Its been 2 & 1/2 years since he was last at school, tonight hes very excited and a tad nervous. Will update tomorrow on how his day went.

Wednesday, January 16, 2008

Hope everyone is enjoying the warm weather, we sure are the pool is getting used daily several times a day.

Ryan's appointment went well today, they are happy with his progress we have stopped another medicine and halved one other. He is now on Aciclovir twice a day, Mycophenolate once a day and Co-trimoxozole on weekends. He will start back at school with all the other kids so this is an exciting but anxious time for him. Thats all our news theres not much happening around here other than enjoying summer and Ryan doing normal kid stuff.

Thanks for checking in......

Sunday, January 6, 2008

Hi everyone,

We had a very relaxed Christmas at home this year it was nice to see Ryan enjoying himself and his toys. The last 2 Christmas's has fallen around his transplants and he wasn't well enough to fully enjoy himself.

We have been mucking around home the kids have been swimming a lot in our pool, Ryan has really found his confidence again now hes stronger, we cant get him out of the pool, he looks so carefree when in the pool....no restrictions.

Today we dropped Ryan and Tyler off at the Camp Quality Camp. We had a family day at Pukekohe race track where we got to ride in fast cars and big Kenworth trucks it was awesome. The kids were then taken to Weslley College for 6 fun filled days.
The house is so quiet....its to quiet. I always think I'm going to enjoy the break and peace and quiet but I'm not to sure.

Hope everyone is having a great break..

Sunday, December 9 2007

Been a while since I have updated its been busy around here with Xmas parties and outings.
Ryan is doing really well, the doctors are really pleased with his progress. It looks like he will start school in January next year.....yahoooooooooooooooo
We have just come back from Christchurch we went down and surprised Josh for his birthday it was lovely to get away from the rush of Auckland.
Its another busy week here with more parties cant wait till xmas is here and it can all slow down again.

Thanks for checking in..

Monday, November 19, 2007

Well the jet setter is home and full of smiles and verbal diarrhea. He walked out of the arrival doors with a huge smile you would think he would say "HI" but oh no instead he gloated about the HUGE roller coaster rides (these just happen to be my favorite rides)can you feel my pain.....
Thanks to Koru Care and Kirsty his carer Ryan had a fabulous trip of a life time. Also thanks to Ray White Hamilton for raising money so these special kids get to go on this trip.

Friday, November 9, 2007

Ryan flew out of the country On the 3rd of November for America, he returns on the 18th November.
They have something to do each day its 15 days packed of fun fun fun. Here is what they will be doing Sunday 4th is a rest day, MON Chips (San Diego)/carlsbad oulet, TUES hollywood walk of fame/universal studios, WED knotts berry farm/medieval times, THURS Disneyland, FRI Sealworld (San Diego), SAT Free Day, SUN San Diego Zoo, MON anaheim fire dept/pirates dinner adventure, TUES coastguard air station/LA coast guard, WED disneyland, THURS californian adventure park, FRI depart LAX, SUN arrive auckland.
A trip of a life time.

Tuesday, October 30, 2007

Gosh its been a while since I last updated but its been quite a stressful last few weeks. Ryan had a seat on the Koru Care trip to Disneyland in November, he did not know about this as we wanted to keep it quiet until we knew for sure he would be going, last year he got sick and couldn't go. The last few weeks have been hospitals, tests, paperwork and just utter stress. Today we saw our oncologist and we got the final OK, so on the 3rd November, yes this Saturday Ryan will fly to America and have a fun packed 15 days over there. As for me I will be sitting here biting my nails and then my fingers. I keep telling myself this will be good for both of us haha

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Thursday, October 4, 2007

WOW WHAT A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!

Today we went to the Whenuapai airbase and went up in the Seasprite. Ryan was treated like one of the guys he was given his very own pair of flying overalls it had his name on it and the 6 squadron badges he also has a cap to match. We got to hang around with guys and see some of the work they do, we went to the briefing of the flight and we understood nothing......lol
1.30pm we took off, first we headed out to Browns Bay and then onto Rangitoto Island where they circled around the crater so Ryan could see it. We then headed off to Starship (one time I'm happy to go there) where they landed on the helipad so the nurses could see Ryan, they were on the balcony waving madly and had hung a sign....RYAN ROCKS, from there we went and circled the sky tower went over the harbor bridge and back to base. It was a day to remember and would like to thank 6 squadron for looking after us. Ryan come home and told the rest of the family about the things he's learnt today and now his suit hangs proudly in his room.
Thanks to all that put there time and effort in giving Ryan a ride of a life time. Will be adding pictures soon.

Thursday, September 20, 2007

Ryan was awarded his yellow belt at Shaolin Kempo today, he has worked so hard to get it, we are very proud of him. To think he was in a wheelchair at the beginning of the year and now look at him. Check out the pics under view photos.

Monday, September 17, 2007

Hi All,

Well its been 5 weeks since our last appointment and all is going well. Bloods are in the normal range and we are to carry on as we are. They have reduced the cyclosporin another .5ml.

The weather is getting warmer now so Ryans spending a lot of time on the tramp mastering his flips (more grey hairs for me)and playing like a normal kid.

I hope all our friends from 27B are keeping well and a big hello to our special friends the Riddle family xoxoxoxoxox

Sunday, September 9, 2007

Well it's all boring at the moment here with Ryan, not much to report other than hes doing well and eating heaps. I'm sure hes grown since last week. We were meant to go for a checkup tomorrow but our doctor is sick so we have been put off for another week.

We are busy renovating upstairs at the moment, my Mum is hanging the wallpaper (thank goodness for Mums) and on Thursday the carpet goes down, so thats the excitement in our lives at the moment....pretty boring aye!!!

Wednesday, August 29, 2007

Hi all,
We have just come back from Ryans endocrinology appointment and it was a good report, so nice to have some positive news.
Hes now 118cm and has grown about 5cm since last seeing them about 6mths ago.
Dr Chris is very happy and in his words "hes had one hell of whack" and hes still growing. For those who don't know chemo and radiation can slow down and sometimes stop growth, this on top of a FA patient who is of smaller statue anyway.
One thing that did surprise him was his growth after both transplants, he had a graph on the screen and after both transplants there was quite an increase??
So for now he wont be going back on the growth hormone injections and we will see what the next 6mths brings.
Gosh if all our appointments were that easy...

Sunday, August 26, 2007 0:53 AM CDT

Hey all,
Things are good here...touch wood
Ryans been fighting a cold and doing well however I thought last night was going to turn to custard, he was showing symptoms of going down hill. He is all stuffed up and getting very tired, but he can still argue so things cant be that bad.
Hope you all have a good week..

Tuesday, August 14, 2007 1:50 AM CDT

Hi All,

Not much to report pretty boring here at the moment. Ryan's appointment went well we have decreased his cyclosporin another .5ml, his counts HGB 119, Platelets 214, WBC 9.98. We don't need to go back till 3 and a half weeks.

Thursday, August 2, 2007

HAPPY 1ST TRANSPLANT BIRTHDAY RYAN..........

WOW one year ago today Ryan had his second transplant, its been a hard year but things are pretty good at the moment.
Today Ryan, Tyler, Kirsty and two of Ryans friends went to Rainbows end and had a fun filled day. We then came home for Pizza and Ice cream cake for his birthday cake...yum yum
I have plenty of photos but need to make space on my computer for them, so keep checking back.

Take care
xoxoxoxoxoxoxoxox

Monday, July 30, 2007

Hello everybody,

Well its been 3 weeks since our last checkup, bloods are good and doctor is happy with his progress. Hes put on more weight hes now 23.8kg must of had something to do with the 3....yes 3 big boston creme dunkin donuts yesterday.

Last week Ryan sat his yellow belt in karate and he will find out in the next few weeks if he passed.
Also last week we caught up with Tua, Pam and baby Emma Jean, Tua (5) also has FA and is nearly 2yrs post transplant hes doing so well now. The specialists were blown away by how well the boys looked and how far they have come.

Things are changing around here now, we have more noise in the house now Ryans able to roll around and play fight with Tyler, and more arguments with Kirsty now he has the energy to have the last say.

In 3 days it will be Ryans first transplant birthday, i will put up some new pics so pop back and have a look.

Take Care
xoxoxoxoxoxoxoxoxoxoxoxox

Saturday, July 14, 2007 5:50 AM CDT

Hi All,

Well I have to apologize for not updating Ryan's site very much lately, but I have part of my life back ha ha, I've had the odd outing out and I'm working from home now so its been quite busy around here.

Ryan's doing really well platelets last week a whopping 245, weight 22.9kg and i think hes grown a wee bit hes now a whole 117cm.
We have seen some sights at home we haven't seen for a few years, Ryan and Tyler rolling around on the ground entangled giggling, laughing and then fighting....lol. Also the latest thing is toy guns where one is a goodie and one a baddie or a zombie as much as I love seeing this the noise is driving me crazy..haha (Isn't this the sort of game they play at Nana and Grandads house??)

Last week 10 special children were picked by Koru Care to attend an outing where they had 10 flash cars, Ryan was one of those children picked they went around Auckland in these cars and stopped off at the Sky Tower and Kelly Tarltons. Ryan got to ride in a Subaru Tribeca, Audi Convertible and a Ferrari he had so much fun, apparently now I need a new car.

Ryan has finally made it to his first Camp Quality Camp, they left on Friday for Rotorua and have a fun packed weekend ahead, they will arrive home on Sunday. He's been so excited about this camp, he has missed out on the last three camps due to being to sick to attend.

Well I think this is all the latest news, I will try and update sooner rather than later.
Thanks for popping by
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Monday, June 24, 2007 9:28 PM CDT

Well another appointment down and counts are good. We had a big chat with the doctors today and we will start weaning his cyclosporin soon, this is a nervous time for us because of what happened last time. However we have good support from the hospital and family so we will be alright.
Ryans been well and enjoying his 2 days at school, hes doing well at his shaolin kempo and is sitting his exam for his first belt (yellow) so hes really excited.

I hope all our friends Tua, Cherokee, Te Ara, Lauren, Eli, Issac, Tim, Scott, Josh, Sean are keeping warm and well..

Oh we also had some more weight gain 22.9kg wow what a whopper

Sunday, June 17, 2007

We ended up getting an early phone call from hospital on Friday morning, Ryans blood culture was positive and they wanted us to go in. It looks like it has come from his ingrown toenail so hes been put on another antibiotic. He was happy with that as he was dreading getting another IV line and also we got to come home. Everything else is good and docs are happy..

Thursday, June 14, 2007

What a home coming present....................
Randal and I went to Sydney for 5 days it was a mothers day present and a much needed break, this was the first time away from Ryan since getting sick 5yrs ago. My Mum and Dad looked after the three kids and they all had fun.(thats what they told me anyway)
We got home midnight Tuesday and Wednesday about 8pm Ryan spiked a temperature, after an hour with no change we headed off to Starship. While Ryan is spiking a temperature in Auckland his good friend Joshua in the South Island was doing the same and had to go to hospital as well, pretty sure those two boys were scheming.
Finally at midnight he had his IV line inserted, they took bloods to culture and decided that they wouldn't start antibiotics yet, at 1.30am we had a bed on the ward....about time. During the night his temperature stayed around 38.6 by the morning his temperature was back to normal.
No antibiotics needed and we were allowed to go home....yahoo

Saturday, May 26, 2007

Hi All,

We are having a great run health wise, I have had so many people this week say how well hes looking.
Last week he started at Northern Health school in Newmarket hes going once a week for 3hrs and when the doc can see him on a different day he will be going twice a week. He is having so much fun and all the other kids in his class are teenagers so he thinks thats pretty cool.
He also got the go ahead to have some highlights put in his hair, so now hes sporting blonde streaks with a few pink stripes. (will post some pics in photos)
Also she said he will be able to get his ear pierced soon, he has been wanting this done for a couple of years now but hasn't been allowed because of counts and then transplant.
So we have had a good week and there has been some normality for Ryan.......finally

Thursday, May 10, 2007

Ryan has had a few very uncomfortable days, he started to get severe back pains and then it moved to his legs and now his skin is very sensitive, even sleeping is a mission. It was like a GVHD sore but no rash to be seen???
Today we were back at clinic and the pain doc come and see him he ran a few tests by putting things on his skin. His pain actually stems from his spinal cord and it is telling ryan his skin is sensitive when it actually isnt??very odd, there is some fancy name for this but cant remember it. They have put him on a very mild dose of amitriptyline to supress the nerves it may go away or it may not. He said this is not uncommon.
Other than this he doing well his platelets are a whopping 260, HGB 114, Neuts 8.57.
Thanks for checking in on us....

Friday, May 4, 2007

Ryans counts have recovered well after our little stay in hospital last week. Platelets 227, HGB 113, Neuts 6.20, WBC 10.87

However we are now battling the weight issue again, he has dropped to under 20kg and the doc is concerned, she thinks his GVHD may have flared in his stomach again so he has been put back on a pulse of steroids, his mouth is sore again and looks like the GVHD is back there as well. I think its time someone invents a fat pill.
Other than this little set back hes happy and well, doing his best to get out of doing schoolwork but not on my shift haha.
Thanks for checking in on us.

Monday, April 30, 2007 7:05 PM CDT

We came home yesterday, no more temps and his neuts were down to 10 so the antibiotics worked well.
Hes looking really well now.

Friday, April 27, 2007 11pm

Guess it was to much to hope we would be going home tomorrow, word is probally Monday.

Neuts have come down to 28 so thats good news. His IV line is sore tonight we thought it may have clotted so another line would need to be put in, Ryan had a wee melt down and in his words.......I don't want another line my lifes been full of needles and finger pricks i've had enough.......what do you say to that???
At the moment the line is working so we will leave it and see what happens, he is happy with that decision.
Well im off for another night of groaning water pipes, banging rubbish lids, beeping machines, squeaky shoes and noisy doors and if im really lucky the helicopter will come a few times during the night....

Sweet dreams all

Friday, April 27, 2007 11.30am

We are back in hospital!!!!!!

Ryan woke up yesterday with horrible stomach cramps and had spiked a temp, bloods came back good except his neuts which were 40 (40,000) doctors words were he is cooking something and some more...lol
IV line inserted and antibiotics started, last night he was much brighter with having the meds and being hydrated.

This morning hes looking good we are staying another night and hope to go home tomorrow depending on white cell count.

Thursday, April 12, 2007 7.30pm

I hope everyone had a good break over easter, we went away for a couple of days and had nice warm weather.

Its been two weeks since we were last at Starship, its been a hard two weeks, Ryan has been ok but to me he looked really sick. Over the last week or so I have been really nervous at what his bloods were doing, well i'm glad to report everything is going well platelets 224, HGB 114, Neut 5.33 so thats a big PHEW. Doctor is a bit concerned with his weight hes stayed around the 20.2kg mark for a while, as we all know FA kids are smaller and have low weight issues but while we take this into account he is also very active again now so I think hes burning alot of it off.

Hope all our friends from ward 27b are doing ok a big hello to Cherokee, Tua, Issac, Eli, Bethany, Te Ara. A big hello to Josh in Gore and to all my TM friends.

Thanks for popping in and checking on Ryan

Take care..

Saturday, March 17, 2007 9am

Ryan is doing really well.......

Gosh when we go back to hospital this week it will be a whole week and a half since we were last there, seems like ages.
He's doing well with his home schooling and doesnt seem to far behind with his work but have noticed he does have some memory loss. He's now signed up with the shaolin kempo classes and loves it this will be good for building up hs muscles, watch out Bruce Lee.
Tomorrow he will be ring bearer for my brothers wedding he cant wait to get the suit on.
Next week he will be turning nine so his birthday list is growing, at home things are back to normal theres a fair bit of arguing between the siblings, thats a sign that hes feeling good. We are having lots of good days now and seeing him do the normal kid things makes us smile.

Thanks for popping in and supporting us on this journey.

xoxoxoxox

Tuesday, February 27, 2007 10.00am

Hello everyone,

Well our days are getting better and better Ryan is looking so well now. All the steroid face has gone now and hes looking like the old Ryan.
Had our regular checkup yesterday they are really pleased with how hes going, bloods are good and eating getting better.His GVHD of the mouth is still bad but has improved since stopping the steroid mouthwash which is very interesting to the docs as that shouldn't make it worse.
We are applying for a scholarship for drum lessons and Shalion Kempo classes, Ryan did his first Kempo class on Monday and loved it, he loves martial arts and cant wait till he can use num chuckers....lol. This is all part of his training to be a stuntman when hes older....I can feel the grey hairs increasing as I type.
Lifes good for us at the moment and all those horrible weeks/months feel like ages ago....thank goodness.
Well must fly Ryan is having a lesson with his teacher and want to see what hes doing, I hope everyone is keeping well.

Take Care

Friday, February 16, 2007 3pm

Hello,

Yesterday we had our regular checkup the doctors are more than happy with his blood results, blood pressure has come down so we knocked 1 BP med off, he continues to drink well between 1000 and 1300mls a day so kidneys are working much better.

Yesterday we caught up with some special friends from Gore, Paula, Chris, Josh and Cass. Josh came up for his make a wish trip he went out fishing with Graheme Sinclair, he had a great time his smile said it all.

Well time to go schools finished better get ready for the other kids..

Thanks for poping in.

Thursday, February 2, 2007 6.50 PM CST

Day 183

This update is for my sister, nag, nag, nag :)

We had our regular checkup yesterday and all is going well platelets 226 HGB 126, they are very pleased with him.
Blood pressure is still high so trying to get that down, today it was 135/90 hes had a bad day, been sick and had a pounding headache, he is also having trouble with his mouth lots of tiny pin prick ulcers, some days eating and drinking is a mission.
Other than these two little hurdles hes doing well, laughing lots, playing lots of xbox (trying to get me to buy him a xbox 360) and just being a kid.
He was hoping he would be allowed to go back to school but the doctors said not yet, one thing hes very happy about is hes going to be ring bearer at my brothers wedding, he cant wait to put his suit on he looks very handsome.
Thanks for checking up on Ryan and leaving messages.

Friday, January 12, 2007 8.02pm

We are back in hospital for a few days...

Had our usual appointment yesterday, bloods ok platelets bouncing around again.
Ryan had his line flushed he must of had some bugs in the line he had a septic shower, so off to thearte to get the line out.
He had an IV line in each hand both of those tissued today so out they came. He now has one in his arm they missed the first time but got the second, so hes very sore at the moment.
Other than this hes looking good and when he forgets about the lines hes happy.
If nothing grows from the cultures we will hopefully go home Sunday, fingers crossed.

Sunday, January 7, 2007 1:55 AM CST

Ryan has had a busy three days, first time in about 6mths hes been a normal kid doing kid things.
On Friday Ryans friend Kennedy came over, they played xbox jumped on the bouncy castle and went for a swim, first swim since April last year he was all smiles.
Saturday he went to his friend Mack's 9th birthday, spent all day there, I collected him at about 9pm and he was all smiles.
Sunday (today) we went to Pukekohe race track to the camp quality family day, full of fast cars and huge trucks.
Ryan ate endless ice creams, slushies, bounced on bouncy castles and went for rides in fast cars, his favourite was the black corvette convertable.
Once again this year he has to miss out on the camp but the family day made up for it and hopefully he will be able to make a couple of day trips.

Thursday, January 4, 2007 2:03 PM CST

~*~*~*~*~*~*~*~*Happy New year to everyone~*~*~*~*~*~*~*~*

We had our check up yesterday and all is going well his platelets are 194, as some of you know I was very nervous the blood test before christmas showed his platelets had dropped.
So all is good the doctors are very happy with him.
His strength is getting better everyday, he hasnt used the wheelchair for weeks, in the holidays he was going up and down steps and the occasional hill and now can manage a slow run.
Hopefully he will get his hickman out in the next few weeks and then he can swim in our pool which will also help him.
Thanks for popping in and hope 2007 is good to you all.

Tuesday, December 26, 2006 7:30 PM CST

Boxing Day........

Well christmas is over and we celebrated it at home you are never to sure if you are going to be home or in hospital as its such a roller coaster ride.
Ryan, Tyler and Kirsty enjoyed christmas, up early 6.30am (only time they get up early) to open their presents.
The main present was a bouncy castle which they had no idea about so that was a big hit.
Kirsty got a MP3mp4 player, tamagotchi, togs, smellies and lots of other goodies, Ryan got clothes, bling bling, miuchiz, xbox game and lots of other goodies, Tyler of course got dinosaurs, mammoths, sharks, more dinosaurs and dinosaurs, three happy kids.
I spent my day undoing endless amounts of twistee ties on toys and picking up paper and boxes.
It was nice to see Ryan smiling, laughing and bouncing around on the castle he sure deserves some fun.
I hope everyone had a wonderful Xmas day with their familys.

***MERRY CHRISTMAS***

Friday December 8, 2006 9.14am

Hello visitors,

Ryans counts are rocking on now platelets 183, HGB 114...yahooooooooo.
We seem to be battling vomiting again in the morning, trying different combinations as it just seems to be a morning thing poor tummy i dont blame it.
Other than that we problem hes doing well, his hair is just starting to come back, looks dark at the moment Ryans hoping for jet black hair.....hahahaha.
Will keep you updated on the colour.

Monday, November 27, 2006 3.10pm

Hello to all.....

Ryan is doing really well his counts from yesterday were..Platelets 125, HGB 114, WBC 6.82, Neut 4.10, Lymph 1.24 our specialist is very happy with his progress.
He has lost some more weight but they arent worried as hes eating well.
Last night I took out his NG tube as its been giving him minor problems mostly making him feel and be sick so out it came, its so strange to see his face clear of tubes.
His strength is getting better, still using the wheelchair when going long distances otherwise his little stick legs get him around fine.
Its getting busy now with Christmas on the way, we are at hospital 1-2 times a week and now the Xmas partys are rolling in, we have 2 this weekend one at Auckland Show Grounds and the other is with Childrens Cancer Foundation at Rainbows End then next week he is on the harbour with Koru Care.
Hes making up for the lost time in hospital.......

Well I'm off to try Ryans triple chocolate chip cookies and banana cake fresh out of the oven, better get in before the gannets arrive.

See ya............

Monday, November 20, 2006 3:13 AM CST

Ryan is doing really well, his movement is coming along nicely he cant run yet but can walk at a fast pace.
Had a checkup today Doc is really pleased, dont need to go back for 1 week.
HGB 110, Platelets 93, WBC 6.31

Great to be home and have our own space, Kirsty and Ryan are back to their usual arguing didn't take long.

Thanks for popping in...

Sunday, November 5, 2006 6:55 PM CST

Day +99

WE ARE HOME...............YIPEE

Wednesday, November 1, 2006 2:00 PM CST

Day +94

All is going well Ryan is off TPN and his pole, no more IV's and all meds are oral now.YAHOO
We have more time out and have been going home for longer hours, we are now working on getting his strength back in his legs, he can walk but stairs are a challenge at the moment.
Eating is going well.

Thanks to everyone who pops in and leaves messages...

Saturday, October 28, 2006 4:13 AM CDT

Day +89

Well the last week has been better for Ryan, he started eating he was allowed crackers, bread with jam, honey or vegemite, plain potato chips and oven chips. He still has stomach pains on and off but stomach and bowels coping well.
His food has been increased hes now also allowed bananas, apples, chicken and beef.
We are keeping him dairy free at the moment as they dont think his stomach will cope with dairy foods.
He is happy with what hes eating he can even have a few lollies.
We are going home 2-3 times a week for a few hours which is a nice change especially now the weather is warming up.
Although hes getting tummy pains and needing the odd dose of morphine hes doing alot better.
Hopefully we have turned a corner and will be home soon.

Monday, October 16, 2006 9.45pm

Day 77

Today we saw gastro and was told that there were no signs of anything wrong with his bowels, then she shocked Ryan by saying he could try some mashed potato and white bread, he asked if he was allowed plain potato chips instead of mashed potato which he was, for dinner he had a sandwich with vegemite on it and he is also allowed lemonade.
All food has been consumed now and so far no tummy pains, we will see how the night goes and what tomorrow morning brings.
So a good day for us here..........yipee

Thursday, October 12, 2006 9.45pm

Day 73

Today we finally saw the gastro team for there input with Ryans gut problems.
Tomorrow early morning he will drink barium (sp) and then every hour he will have an x-ray for about six hours after.
Still no eating but have allowed a few crackers if he gets really hungry, for now he is happy with that.
Other than this problem he is happy he spends his days drawing, making bead braclets, playing xbox or watching TV.

Sunday, October 8, 2006 4:09 AM CDT

Day +69

Hello everyone.

Ryan is still nil by mouth and its really starting to get him down at times, all he wants to do is eat but the GVHD is still hanging around.
We are having alot of quiet times where he dosent want to talk to anyone and is sad. However tonight he is talkative and is doing a job for the nurse because he is bored, hes separating the syringe packets and while hes doing this he is debating if he should have a McDonalds bagel or pancakes and a bottle of milk or the hot chocolate when hes aloud to eat again.
Other than the GVHD everthing else seems to be going ok he had blood and platelets yesterday which they are holding longer now.
He is asking tomorrow if he can try something to eat as hes really hungry, I cant see it happening myself but we will try.

Thanks for checking in...

Monday, October 2, 2006 9.45pm

Day +63

We are still in hospital and I cant see us coming out soon.

Ryans stomach is still having trouble, we stopped his NG feed yesterday as he was needing morphine again, today he had one dose and had no more severe pains just the odd one here and there, no shit when the doctors say this is a long drawn out process.
His counts are ok platelets 29, neut 1.54, HGB 93 the counts are holding longer now.
We have been able to go home for a few hours last week so that was a nice change for Ryan something different than these yellow walls..........barf
The doctors are very pleased at how hes doing his liver counts are coming down slowly so thats another bonus.
Ryan spends alot of time colouring in, drawing and painting hes becoming a real little artist.
I will pop up a photo that was taken today so you can all see how good he looks.

Thanks for popping in.

Tuesday, September 26, 2006 11pm

Day +56

Monday we had a wee setback with his stomach, lots of diahorrea and sore stomach again, we stopped the crackers and drinks, things have slowed down a bit during the day.

Today we stopped his NG feed to see if that was also some of the problem, went to the toilet at 7.30am and the next time was 4.50pm so things have slowed right down, his stomach is not ready to have anything yet.
Ryan made some cookies for the nurses today and really enjoyed it even though hes not allowed any, now he wants to do some home baking.
Hes been alot happier since we have been able to go out for walks, he now is playing xbox and listening to some horrible music, one day I will be able to get some sleep.

Thanks for checking in and leaving messages.

Saturday, September 23, 2006 11pm

Day +53

Ryan is doing pretty good, he is chatting away to us, been playing his xbox, grooving down to his music and now he wants a drum set...

We have his NG feed running at 18mls an hour and he had 3 rice crackers yesterday, Today we thought we would try him on some 2 minute noodles he had about 3 teaspoons, later in the afternoon he had a wee bit of a sore tummy and then lots of toilet stops, the noodles went right through him, back to the start we go rice crackers only.
The last few days we have been able to go out for a walk in the fresh air so that has been nice.
This GVHD is a long slow road but hopefully we will be able to go home soon.

Tuesday, September 19, 2006 9.30pm

Day +49

Well hopefully we are on the mend.......
The last two days have been pretty good for Ryan, his skin is looking good and has been much happier, last night he spent three hours colouring in, that was a good sign.
We tried him with his NG feed yesterday starting at 5mls an hour we got to 12mls and he started having stomach pain so we stopped the feed.

Today we started the feed this time at 2mls an hour and now have it upto 5mls, he has had 42mls (so far since this morning) and no tummy pains so far, hoping this is the start for him being able to eat......
I went out today and bought him some new clothes so that has perked him up, he is now colouring in some more.

Our next mission is to get him exercising as he has become very weak in the legs, he collapsed the other day trying to get out of bed himself and hurt himself, once hes on his feet he is able to walk to the toilet but needs to be supervised as hes really wobbly on his feet.
Looks like we will be here for Tylers birthday but hopefully next week may be our lucky week when we can go home...

Friday, September 15, 2006 10pm

Day +45

We are still here!!!!!!!!!!
Ryan is looking and feeling better than earlier this week, diahorrea is almost gone but stomach pains are still there, he has been put back on his PCA machine so he can give his own morphine.
Still nil by mouth (still not happy about it) and being feed TPN through the veins, the last two nights he has said hes really hungry and can hear his tummy rumbling, hopefully the doctor will let him try something and see how his tummy goes.
They have said we could be in for a while until this problem sorts itself out, I hope not to long as Ryan is very quiet at the moment and dosent talk alot, I think he has had enough and is pissed off with life......

Tuesday, September 12, 2006 10.pm

Day +42

Last night was a pretty good night for us, we actually had a stint of 4 hours sleep and no diarrhea all night....yahoo.
Today has been pretty good had the odd tummy pains morphine has helped, the doctors still want to rest the stomach so hes still not eating, he has been put on TPN and that has helped his food craving.
Very sleepy today but still manages to have his hour long showers and dreaming about what he wants to eat.
Well hes fast asleep so I am off to get some shut eye as well.

Night Night

Sunday, September 10, 2006 9.30pm

Day +40

The last couple of days have been ok for Ryan, yesterday was a good day toilet wise only went 5 times in 24hrs, still had tummy pains and using the morphine pump.
Today he has been on the toilet heaps his tummy has been really good pain wise and has only had pamol once today no morphine.
He has been allowed to have some small things to eat today first time in 7 days, he has had a mouthful of jelly,1 piece of plain bread,4 rice crackers and half a piece of toast with marmite along with drinking flat lemonade......no stomach pains so far touch wood.
We needed to have blood today and we are going to get platelets tonight.
Hopefully tomorrow will be even better...

Thursday, September 7, 2006 3pm

Day +37

This entry is especially for you Norm.......ha ha ha ha

The last couple of days have not been to good at all, Ryan has been having severe stomach pains and diarreha, he had the scope put down which confirmed that it is GVHD and today I was told it is more on the severe side.
Yesterday his stomach was really tender and sore we had a stomach x-ray and abdogram to see if there was any bleeding and checking the kidneys and liver, nothing showed up.
They suspect that he has a infection in the stomach although tests show nothing we had a slight spike of a temp the heart rate was up along with the sore stomach, hes on antibiotics to combat it all and today hes been better.
The surgeons came up last night to review him and after poking and prodding (he was not impressed at all) they said there was no evidence that there was any leakage and at this stage they dont need to go in and have a look .......Phew.

Today he woke up alot better and has only just gone to sleep now in the last 15 minutes, first sleep of the day.
He even managed to play Xbox for a while and crack a smile.
Still not eating but allowed clear fluids but hes not thirsty, and as for peeing well thats not going to good either.

I think we have a little battle on our hands, other than this we are doing fine and the rest of the family is great.

Wednesday, September 6, 2006 10.45pm

Day +35

Another night with broken sleep, that prep med is yuck we were up every hour.This morning the doctor came and said there was a mix up with booking theatre and Ryan wouldn't be going in today....great. Ten minutes later our nurse came in and said that another child had a temp and couldn't go to theatre so we might get in later in the day, we finally got to theatre at 4pm.
Procedure went well and have only briefly spoken with the the docs they say it looks likely that it is GVHD so will see our doctor tomorrow to see what the plans are.
While he was down there they gave him a drug called Ketonen for the pain, what a horrible drug he was hallucinating and acting funny.When they had the scope down his throat they caught his NG tube and it ended up giving him a slight blood nose when we went to put his meds down at 8pm it was blocked, not even coke could unblock it so we pulled it out and #6 was put in.
Hopefully tonight we will get some much needed shut eye.

Monday, September 4, 2006 8.45pm

Day +33

Ryan had a terrible night last night was up every two hours then it was every hour and by the morning he was on the toilet every 20 mins, the stomach pains were more frequent and very painful he was given morphine which gave some relief.
The afternoon has been much better the pain is under control and toilet stops are less, still not eating as that makes the pains worse.
On Wednesday he will probally go to theatre they will do a scope (both ends) and also take biopsys as they suspect its GVHD.
Counts are good platelets 61, HGB 105, neut 7.67

Well hoping for a good nights sleep :)

Sunday, September 3, 2006 5:48 AM CDT

Day +32

We are back in hospital came in this morning the doctor took one look at Ryan and said you wont be going home today.
The nausea was getting to much for him, he was feeling sick when he ate and when he didn't. He hasn't been eating alot and has been very weak.
He has been put back on zofran he has had less nausea and it dosent last as long.He has been quite perky tonight much more than the last 2 nights.
One good thing his counts are climbing.

Saturday, September 2, 2006 8.50pm

Day +31

On Friday we had #5 NG tube put down, I think we may have caught up to you Cherry. Ryan did so well it went down like a dream.
Friday and Saturday have been pretty grotty days hes having a real battle with the nausea, if he dosent eat he feels sick and if he does eat he feels sick.
He has spent all day on the couch and is very tired, the doctor told us that 5-6 weeks after radiation they get very tired for a few weeks.
The afternoons seem to be better where he has more colour and is a bit more alert.
A big hello to Te Ara (HAPPY BIRTHDAY), Cherokee & Josh hope you guys are dong ok....

Thursday, August 31, 2006 4:16 AM CDT

Day +29

Well we finally came home on Wednesday, Ryan was having bad pains in the stomach on Sunday that needed morphine we were admitted they think he has some GVHD in the boy region which was part of the pains.

He had a great nights sleep last night in his own bed but the morning was not good at all, we had to get up early for our clinic appointment and the nausea started along with the stomach cramps.By the time we arrived at hospital he was not well at all, by the time we left late afternoon he was far more comfortable but very tired. We are back at clinic tomorrow for more bloods.
His counts are good platelets 47, HGB 114, Neut 2.37

Sunday, August 27, 2006 5:00 AM CDT

Day +25

Well we are back...we were admitted this morning Ryan was having severe pains in his groin area and the pamol just wasnt cutting it, he needed morphine.
His urea levels were high when we arrived but had come down this afternoon, so hes being hydrated over night.
He is happy and hasn't had any pains for a few hours.
Hopefully we can go home tomorrow.

Saturday, August 26, 2006 4:29 AM CDT

Day +24

Yes we are home, we came home yesterday by the time I rearranged Ryans room to fit all the bits and pieces that we collected in hospital it was time for dinner then I was to shattered to update his site.

Ryan is doing well and enjoying it at home, its very different at home with so much room around him he likes to know I am somewhere close in case anything happens.
Taking all those meds makes him feel yucky sometimes but he handles it well.
All he wants to do is go shopping and buy some new clothes and shoes....lol.
Looks like the puppy is on hold for a few months while he is on a certain medication but when hes allowed he will be geting one.

Thursday, August 24, 2006 10.45pm

Day +22

Today I started giving Ryan his meds again.....yuck, he is going home with 8 different meds and by the end of the night has had 18 doses in total, no wonder why he feels sick sometimes.
Hes had a good day and docs are very pleased with his progress.

We are going home tomorrow.........yahoo

Wednesday, August 23, 2006 4:48 AM CDT

Day +21

Sorry for no update last night but I was to busy perving at the Warriors, the whole team came up to visit the kids there were bums and biceps everywhere. Yummmmmmmmmmmmmmmmm
Ryan had his picture taken with some of them and got his bandana signed.

Things are going well, they are talking about us going home tomorrow or Friday but we will see what happens, wont get to excited.
Nana and Grandad came to visit today before they head off on holiday.
Well not alot else to say we will carry on and see what tomorrow brings.

Monday, August 21, 2006 11pm

Day +19

Hello from room 10......
We had more time off his pole today and went for a walk outside it was nice to see the sun shine.We are now down to one line all other meds are given orally.
Today Kirsty and Tyler were allowed in the room, first time in a month all 5 of us have been in the same room.
All has been going well today, I thought with the time that we had outside and playing with his brother and sister he would be tired...NOT...hes sitting in his bed having a milo and crackers with peanut butter (check out the time above).
Well he has just asked for some more crackers so I had better get of my chuff and get them...

Night all

Sunday, August 20, 2006 5:39 AM CDT

Day +18

Today Ryan was unhooked from his pole for 4 hours so we went outside for a walk (well I was walking but he was in a wheelchair) it was nice to get some fresh air, we then went across to Auckland hospital to check the shops out and then came back and sat in the playroom and coloured in.
He is still eating well but getting the 2 litre of fluids in is hard.
Well im off to pry the controls out of his hands he is fast asleep but they are wedged firmly in his hands....

Saturday, August 19, 2006 6:17 AM CDT

Day +17

Today has been a good day, Ryans eating is going well and there always seems to be something in his mouth.
His kidney levels are up so we need to get 2 litres of fluid in him a day to flush the kidneys, thats damn hard to do when your not thirsty.
Everything else seems to be ruuning to plan, Ryan is talking about his puppy that hes getting and sounds excited.

Thankyou to everyone that has left a message, its nice to come on here at the end of the day and read them.

Thursday, August 17, 2006 10.50pm

Day +15

Another good day................
Ryans eating is increasing we have added another piece of toast at dinner time,half a toffee pop and some meat chips.

Some of the All Blacks came to visit today so the doctor let Ryan off his lines so he could meet them, we were out of the room for about an hour it was a nice change for us. See Ryans photobucket site for the pics. Just this short time out has buggered him and he was asleep by 9.30pm (very unusual).

The rest of the day has been pretty boring but running to plan.

Wednesday, August 16, 2006 5:08 AM CDT

Day +14

Another good day today, its been very quiet around here, Ryans pole is getting lighter 1 machine has been taken off and his feeds are being reduced.
He has some GVHD on his legs and arms, at this stage its only minor, I only hope it stays that way.
He must be getting better because hes giving the nurses a bit of cheek and ordering them around.
The bone marrow nurse mentioned today that possibly if all goes well we may be home next week, but we will see Ryan needs to be off his feeds and taking his meds orally.
Well I better go as I type this Ryan is doing his best to watch cartoons through his eyelids and drink a juice which keeps spilling down his shirt.

Tuesday, August 15, 2006 4:20 AM CDT

Day +13

We had a quiet day today everything went smoothly.
Ryan woke this morning and it was hard to tell the difference between him and the sheets, he was really pale and tired.
He had blood and platelets today his colour has come back and now he has energy, he can actually stay awake.
The day was very quiet and ran to plan.
We are having an early night I think the past 3 weeks have caught up on me, I can hardly stay awake so i am off to hopefully get some uninterrupted sleep.........ha ha ha

Night night

Monday, August 14, 2006 5:09 AM CDT

Day +12

When I woke up this morning I was 35, as I type this I feel and look 85.
Randal came up this morning so I decided to go for a walk I was gone no longer than an hour, when I came back in the room Ryan was crying and in pain within seconds the pain had gone from a 3 to 10+ well off the scale, he was just about climbing the walls screaming in pain saying he cant take the pain anymore, pleading with me to stop the pain, crying mummy, mummy, mummy on my shoulder (if you know Ryan this is not him at all)he was pushing his morphine button like crazy but it only gives a small dose every 5mins so the nurse gave him some tramadole (sp) it took a good ten mins before things started to subside (longest 10mins in my life) so he was comfortable.
Every Mon,Wed,Fri he has a antifungal drug ambisone and we have noticed he was getting aches in his body so they decided to run it over 2hrs but for some reason it was missed and was run over an hour, the drug adheres to the nervous system and a small percentage of people (1.9%)get this painful result....it would have to be us. Anyway an hour later he was all recovered and comfortable, they are no longer giving him that drug....thank god.

The afternoon went without a hitch, mouth is better and hes eating alot more. BUT HOWEVER TONIGHT
I went to walk out of his room and as I turned to talk to him I could see one of his pupils was dilated, I thought omg brain bleed as his platelets are 15, called the nurse they were in like a shot doing neurological obs on him and the doctor was called who examined him and said there were no obvious signs of trauma to the head, after discussing with the consultant she asked was he wearing a scopoderm patch (anti nausea patch) which he was she said it was most likely he has touched that then rubbed his eye, but to have a CT scan just in case. So 9.15pm off we go to have our CT scan nothing showed up that there was a bleed anywhere and he felt that injecting the dye wasnt necessary...once again thank god.

When we got back up here I told Ryan he had aged me fourty years.........he just laughed.
I can only hope that tomorrow is a much more relaxing day..

Sunday, August 13, 2006 5:07 AM CDT

Day +11

Another good night last night and also a good morning, Ryan didn't wake until 11.30am.
Today Ryan got to leave his room and go for a walk down the corridor, we were only out for about 5mins and he was buggered but nice to see something different than our 4 walls.
He has had another good day and been eating small amounts, warm toast seems to be the easiest thing for him to eat as the ulcers on the tongue seem to be the worst.While I type this he is eating peanut butter toast and having a milo.He has had me running back and forwards to the kitchen wanting to try different foods. (Tania you will pleased to know hes been asking about the RSA chicken nuggets.)
Its been a pretty relaxed day hopefully tomorrow is the same.

Night all............

Saturday, August 12, 2006 10.45pm

Day +10

Ryan has had a good day today.....we are starting to see some white cells, as of this morning they were 0.63
His mouth is still sore but his tongue stings the most, he has eaten small amounts today hes had toast,ice cream,milo,and spaghetti but in between he is dreaming of other foods.
He is still using the morphine pump to control the pain this enables him to eat as well.
The xbox was going today so thats a sign he is feeling much better, as i am typing this he is watching telly.

I hope tomorrow is as good as today, thanks for checking Ryans site..

Friday, August 11, 2006 5:26 AM CDT

Day +9

We had a good night last night I finally got to bed before midnight, 11pm the lights were out and at 2am was woken suddenly by the fire alarm....lol, back to sleep at 3am and had some more zzzzzzzzzzzzzzzz's.

Today Ryan has had a good day, he has been awake more during the day was watching telly and even managed to do some games in his colouring in book.
He is still using the morphine to control his mouth pain, he is getting hungry and tried to eat something today he tried small bits of pancake and ice-cream,toast,chocolate,banana,peanut butter sandwich, yoghurt even though his mouth is sore he had nibbles.
We may be seeing some white cells coming in....fingers crossed.

I am off for another early night.

Tony if your reading this it must be 5am......good morning

Thursday, August 10, 2006 10.40pm

Day +8

Last night was the worse night so far Ryan and I we only got a few hours sleep,his mucositis was really bad and he had cronic diarrhea which had been getting worse over the last few days.
He ws taken of his NG feed as they suspected it was making the diarrhea worse and now everthing has slowed down.
Ryan was so exhausted and shattered today that he couldnt sleep so we gave him a nice warm shower and finally at 1.30pm he went to sleep, he slept for 3 hours, woke for a little, slept some more woke to go to the toilet and then another sleep, tonight he looks much better in his face with having some sleep.
His mouth is full of ulcers and is very sore he cant swallow as its to painful, and hes doing very little talking so i need to suction his mouth out, he is controling the pain with his morphine machine.
For the first time in days he is watching a bit of telly now as i type this.
I am not going to say this time I am going for an early night as it never happens, I can only pray it will be my lucky night and he can have a good nights rest.

Wednesday, August 9, 2006 4:33 AM CDT

Day +7

Ryan has had a good day today, not to much pain.He is now hooked up to his own morphine machine and when the pain is to bad he has a button (that only he is allowed to use) to push to give him the morphine....very cool.
There has been no nausea today....yipee.
I really dont know where the day went today, I was rushed off my feet with demands from the little guy wanting this drink and that drink, a banana, an apple, the usual story go and get it have a sip or a bite and then he has had enough.
Tomorrow he will start GCSF so hopefully we will see some white counts after the weekend....

Tuesday, August 8, 2006 10.15pm

Day +6

So much for my early night last night we were up every hour to two hours, it was a long night.
This morning Ryan woke up with a really sore throat will be more ulcers, had some morphine and that helped heaps.
The nausea has still been a problem today and hes felt like crap,its been ongoing all day even the doctor said he looked a bit green.
5.30 tonight he wanted a shower he sat in there for ages when he got out he was feeling better and managed to sit up in bed, we had about 4 hours with no nausea so that was nice for Ryan.He is now feeling a bit yucky and has had some morphine for stomach pains......may be a long night.
His hair is starting to fall out.

Well I will try for an early night and see what it brings us.

Monday, August 7, 2006 9.45pm

Day +5

Well another shitty day.
Although he was a bit better today he was still really sick, he spent most of the day with his head in a sick bowl or under a cold pack.
He has managed to have 182mls of NG feed minus a couple of vomits so thats good for him.
There is no playing Xbox at the moment (thats how sick he is) there is alot of heavy breathing techniques to combat the nausea.
His tummy has been really sore today and tonight his mouth is dribbling alot from the mucositis so dont know what tomorrow will be like.
Well off to get some sleep hopefully....

Sunday, August 6, 2006 4:46 AM CDT

Day +4

Ryan had a very restless night last night and today has been a shitty day.
He has been feeling really yucky vomited a few times today but has kept the NG down, still not eating and his NG feed has only been running at 5mls an hour have increased it to 10mls tonight and will see how he goes.
His mouth and throat seem ok but the build up of mucusitis in his tummy seems to be making him sick, his bottom is also sore so we gave him some morphine to help the pain.
He is totally miserable, hopefully tomorrow will be better.

Saturday, August 5, 2006 9.20pm

Day +3

This morning Ryan needed platelets before he could have the tube put down, so he ended up having a nice sleep thanks to phenergan. When it was time to get the NG down he sat up counted to three and it was down in about 15 seconds there was no movement or a word from him.......what a champ. I think he was very proud of himself as I was.
We have had a pretty quiet day, his tounge is a little sore when he eats or drinks but pamol seems to be doing its job.
He has slept alot on and off today I think he catching up on some sleep as last nights NG saga worried him all night and had a restless night.

Friday, August 4, 2006 10.15pm

Day +2

Ryan has had an ok day, seems mucusitis is on its way can see some small ulcers in his mouth, hes not in any pain yet.
Tonight he threw up his NG tube again so will have to get it put down tomorrow morning, this is really upsetting him and he is very scared, it is needed as hes not eating and has lost 2kg already.
Hes been pretty happy today watching TV, playing xbox and having 2 long showers which he loves.

Well I hope tomorrow is a good day, nurse has said she is doing the NG at 9am so theres no putting it off.

Thursday, August 3, 2006 11.50pm

Day +1

Ryan has had a good day, we now sit and wait and hope to see some counts.
He has been saying his tummy feels funny and has a sore throat, I think it might be the start of mucusitis which is very painful.
Tyler is good today walking around fine.

Wednesday, August 2, 2006 9.20pm

Day 0 Transplant day

What a busy day. Tyler went to theatre early so that was good, he was out about 9.30am only took about half an hour to get the harvest of 400mls.
Ryan received the blood over a couple of hours and there were no reactions...........yahoo.
His NG tube was put back down today and he did so well.
Tyler has gone home, he hasn't complained today was a little sore at first but is up and walking around.
Ryan is shattered tonight but feeling well.

Thanks for the messages.

Tuesday, August 1, 2006 8.30pm

Day -1
Well its an ealy update tonight as i need to get some sleep with tyler coming in early.
I spoke to soon last night, 11pm Ryan was sick and up came the NG tube, nurse couldn't get another down so left it for the night, then about 3am his blood pressure was 168 so i had very little sleep.
Before lunch they tried to put another NG tube down but failed twice, he was beside himself, was angry, kicking, hit my arm and even tried to bite me........(did i mention hes free to a good home), they have decided to leave it for a day or so as hes eating well and will give him something to relax him next time.
The NG has been the only hiccup today, last ATG went well, hes happy and bubbly and has been playing xbox for hours first time for a week.

Well off for a good nights sleep (touch wood)

Monday, July 31, 2006 4:36 AM CDT

Day -2

Ryan has had a really good day today, he has high blood pressure but they are giving medication for it.
There have been no fevers or reactions today so far.....touch wood,he managed to eat some mashed potato and eye fillet steak.For some reason he has the devil in him tonight getting up to his usual mischief....good to see.
Tyler has been very brave getting his GCSF every day, tomorrow will be the last one.

Well off for a early night, hope temps stay away.

Sunday, July 30, 2006 5:00 AM CDT

day -3

Ryan has had a pretty good day today, much better colour in his face and a bit more happier.
ATG so far has gone off without a hitch, had a slight rash but nothing major didn't effect him at all, no temp so far...touch wood. Hes been eating small amounts so thats good.
His body is getting used to the drugs as he only had a small sleep at 5pm, phenergan no longer has the kick it used to.
An early night for Ryan he went to sleep about 9.30pm better than midnight.

Thanks for all the messages.

Saturday, July 29, 2006 10.55pm

day -4

Ryan had an ok day today, managed to have chemo and ATG with no reactions...however about 9ish he started to feel a bit sick and shivery, had a shower and then it was all on, had the shakes quite bad for abou half an hour. Have started him on antibiotics just in case its an infection but think its probally from the ATG.Hes carrying a bit of fluid so they are watching him closely, he has managed to eat little bits today.

Friday, July 28, 2006 10.30pm

Day -5

Chemo went well today no hiccups. ATG started today, first few hours went well then he started to get the shivers and a temp and hour or so after that he got a bad welt reaction, far worse than the ones with blood and platelets. Started at the lower body and worked its way up looked like he was badly sunburnt.
He has had so many different drugs today I wonder how his wee body copes, had a few doses of phenergan today so he has been pretty sleepy.
Hes been pretty miserable today (I dont blame him) his body has taken a battering, all day he has been asking for a shower but has not had the chance as he needed to be monitored or hes been sleeping, but he woke about 10pm and finally got his shower he looks refreshed and a bit brighter.

Only 4 more days of ATG, hope that this will be the worst day.
White cells this morning were 1.69, late this afternoon they were 0.12

Will be back tomorrow with another update.

Thursday, July 27, 2006 3:33 AM CDT

Day -6

Ryan has had a good day today, chemo went well with no hiccups.
Creatinine level came back an hour ago and has dropped again to 51....yahoo. Hes now being NG fed, hes not being sick just isnt hungry, he now has 3 machines on his pole and 5 lines coming off it.

Teacher came to see Ryan today and hes up to his usual tricks, when she left the room to get some gear he told me he needed to go to the toilet but was going to wait until the teacher came back and then announce it, sure enough teacher sat down and Ryan said "Mum I need to go to the toilet".....little bugger.

Wednesday, July 26, 2006 9.10pm

Well what a day....didn't start chemo again today they wanted to let his kidneys rest some more as they have had a battering.His creatinine is now 82 and his urea is normal so that is a big relief to us.
We are starting chemo tomorrow, hes had a change of drugs so theres no extra strain put on his kidneys.
Infusion day is now Wednesday 2nd August.
Hopefully tomorrow will go as planned without any hiccups.

Thanks for the support and kind wishes from everybody....

Tuesday, July 25, 2006 6.55pm

Today we have had a hiccup in Ryans treatment his creatinine levels are high, yesterday they were 54 this afternoon they are 163 so the docs are very concerned.
His chemo has been put on hold it would be to dangerous to give that to him today, he has been put on restricted fluids so the kidneys dont get over loaded.He will have a blood test 8/9pm tonight and fingers crossed the level has come down.
Ryan had his NG tube put down today, im so proud of him it was a very scary moment for him.
Today I bumped into Ryans good friend Cherokee and her Mum, Cherokee was also getting her NG tube put in, hope it went ok.
Well hopefully I can put some good news in here tomorrow about his kidney function.

Bye for now..

Monday, July 24, 2006 7pm

Day -7

Ryan had radiation today his treatment is 20mins each side, the first 20mins went well, the second side we got 5mins into it and he started to feel sick, he spent the next half hour vomiting finally we started again and only needed to stop it once.
He has been vomiting every 20mins since finishing, he will sleep a little then wake and be sick and the cycle carries on.
He is very tired, hopefully he will have a good nights sleep.

Thursday, July 20, 2006 10:52 PM CDT

We start transplant on the 24th July

Ryan went to theatre yesterday to get his hickman line put in, by the time he went down in the afternoon he was hungry and grumpy. When he came out he was not happy and thats putting it mildly..
He aslo had a NG tube put down so he was also uncomfortable with that, by the time we got home it was after 9pm and he was shattered.
Today hes been ok hes stiff and sore but still manages to play xbox thank goodness as this is one thing that keeps him happy.
Thanks for checking in.

Wednesday, July 19, 2006 4:59 AM CDT

24th July is when we go to transplant......

Tomorrow Ryan is going in to have his hickman line inserted and they will also put a NG tube down as they said he wont be eating this time around, thought they would do it while he was under as hes scared of them putting it down, so he will have 3 days to get used to it before we go in.

Ryan has been keeping well, kids are back at school yay holidays are over, Tyler has had his bloods and was very brave.
Will update tomorrow with how Ryan got on.

Thursday, July 6, 2006 2:19 PM CDT

We have dates for transplant!!!!
Monday the 24th July is the day we go in and is also the day he will have his radiation, the following Monday will be the day he receives Tylers marrow for the second time.
Ryan has been keeping well, Platelets yesterday 15, HGB 83.
Last week Ryan received an awesome package from Microsoft, it was filled with games and lots of goodies, this will keep him occupied in his hospital room.
We are having lots of appointments as to be expected so are very busy.

Friday, June 16, 2006 2:45 AM CDT

You think once would be enough but NOOOOOOOOOOOOOOO we have to do things twice, we were told that we will be going for a second transplant in late July.....oh joy

Monday, June 12, 2006 7:30 PM CDT

Hello all,

Went to hospital expecting to get platelets and they sent us home, Fri 12th his platelets were 26 so was expecting to get them on Monday. Monday his count was 16 they want to see if he can hold off till Thursday if he does it will be 13 days without needing a transfusion.
They are still not sure whats happening as he is needing less transfusions but the last 2 chromrism tests have showed no change??????so we still wait.
Ryans health has been good he eating really well, when he went to transplant in Nov 05 he was 17kg this week he is 25kg and hes not on steroids must be having a big catch up.
Still playing his xbox and has started corrospondance with school work which he is really enjoying.

Tuesday, June 6, 2006 4:12 AM CDT

Today we had an appointment with our doc, we are still waiting for the last 2 chromosone tests to see if there is any change.....waiting..waiting..waiting.Counts today HGB 112, Platelets 68, Neut 0.62 he looks well and is like any other kids his age.
We have been told that a top up is very unlikely as they think it wont work and a second transplant is the best option, they still want to see the last 2 results before making the final decision.
If Ryans not at hospital hes on his Xbox and if hes not on that hes doing his schoolwork, seems to like the work they have set for him.
Well hopefully one day soon we might have some news.

Monday, May 29, 2006 5:26 AM CDT

We had an interesting day today.Had an appoinment with the doc and they are preparing to go for a second transplant as there havent been any changes in his marrow, we will be seeing them on Thursday as we have alot of questions for them.

Ryan had platelets and blood but not without complications, his platelets were nearly finished and he started to have an anaphylactic attack, 2 nebulisers,more phenergan and hydrocortisone he was finally coming right after 15mins...scary.

He slept for 3 hours after that.

Not a day I want to repeat in a hurry.

Thursday, May 25, 2006 11:12 PM CDT

Hello
We had had a pretty good week, Ryan managed to fight off his cold himself so that was good, bloods have stayed the same this week.We are now waiting for the 3 blood results to come back to see if there has been any change in the marrow.Back on Monday for platelets.

Wednesday, May 17, 2006 8:40 PM CDT

Ryan has been much better in the last few weeks.Appointment today Platelets 31,HGB 108,Neut 0.50.Finally the neutrafils are climbing very slowly, docs arent quite sure whats happening but they are hoping that Tylers marrow is starting to graft again.We will know more in about 3 weeks, he is having bloods taken every monday for 3 weeks and then we will see if the percentage of tylers marrow is increasing or not.He is still having platelets but slowed down to about once a week, if hes not at hospital having an appointment he is on his xbox.

Saturday, May 6, 2006 3:04 PM CDT

WOW what a great day we had, 7.15am a huge fire engine came down our drive to pick up Ryan and his dad on board was Helen, Ryan, Rene, and Kerry.Ryan was presented with his very own real fire fighters helmet with his name on it and a kids fire suit.The drive to sky city was cool and very bumpy.
I took Kirsty and Tyler into sky city and we watched them enter the base of the tower and eventually come out looking hot and tired, some did the climb once which was 1039 stairs which was 47 floors and then there was the teams of 4 which did the 10,000 stair challenge 3 fire fighters did the climb 3 times and the 4th fire fighter did it 4 times.
Crazy they are but amazing to see them do it as they are in full gear hot and tired but still pushing themselves to keep going.
On the way home they surprised Ryan and stopped off at the city station where they got out the huge truck with the scope on it and Ryan and i got to go up in it, 75 feet up awesome.
I got to have the ride home with Ryan and it was very cool,by the time we got home he was shattered but had a great day he was also given a bag of goodies that was bought for him to go to disneyland so he was spoilt rotten.

I would like to say a big thankyou to.....Scottie,Ryan,Rene,Kerry,Helen,Trish,Adriene and everbody else who helped make this day a great one.

Thankyou

Friday, May 5, 2006 4:32 AM CDT

Today Ryan had platelets seems to be having these once a week at the moment.
Tomorrow Ryan is being picked up in a fire engine by the local fire brigade and heading to sky city where firemen are raising money for leukemia and the blood foundation by climbing the stairs in full gear, Scottie dropped a shirt off to him tonight with his name embroided on it so hes like one of the guys.
Monday we have a meeting with the doctor and hopefully they will tell us what the next step is with Ryan, if its another transplant or not.

Monday, May 1, 2006 4:49 AM CDT

We are home, will see if we can stay here more than 3 days this time.

Saturday, April 29, 2006 11:12 PM CDT

Ryans back to his normal self, been playing that xbox from when he wakes until he goes to bed at about 10.30pm.
Had high blood pressure this morning the medication has sorted that out and its now in the normal range.

Friday, April 28, 2006 4:53 AM CDT

Back into hospital 1am this morning with a high temp and vomiting.
Ryan had platelets today they had to pause his second lot as he started to have breathing problems, but all is well now.Hes a bit sleepy after 2 doses of phenergan this afternoon and he managed to eat a little and looks much better.
We received the results today Ryan has 21% of tylers marrow have been told this is still good news, we now wait for our doctor to contact John Wagner (i think that was the name) and discuss what will be the best option for us to follow.
Will keep everyone posted when we have some information.

Monday, April 24, 2006 11:46 PM CDT

We came home on Monday afternoon, Ryan needed platelets before we came home and we are back on Wednesday for bloods.
Hopefully they may have our results back on the bone marrow as I am sick of all the waiting.

Saturday, April 22, 2006 10:29 PM CDT

Its been 13 days now and we are still in hospital, ryans temps have settled now and he now has a pic line in his arm.Results arent back yet so we still don't know what we are dealing with, counts still dropping so every 4 days hes having platelets and transfusions.
Will update when we know whats happening.

Thursday, April 13, 2006 7:54 PM CDT

Well we came into hospital on tuesaday moring about 3.30am as Ryan spiked a temperature he was put on IV antibiotics and is still on them, looks like his temperature has settled down but his counts have dropped. Platelets 20, HGB 92 and Neut 0.03.
We will hopefully get some results of his bone marrow aspiration next week to see whats happening.

Saturday, April 8, 2006 4:29 AM CDT

On Tuesday, day +137 went to hospital to pick up a prescription I mentioned a few things about Ryan so they decided to do a blood test the results came back platelets 16 HGB 78 and .5 Neut....not good at all.
Hes had a bone marrow aspiration to see whats going on and should have results this week, hes also had a platelet and blood transfusion.
We are now playing the waiting game once again and hope we get some good news this week.

Wednesday, March 15, 2006 3:04 AM CST

Ryan received some very exciting news on Tuesday 14th March he has been selected to go to Disneyland with Koru care he is so excited.Over the next couple of months we will be fundraising so if anyone has some great ideas drop me an email.

Tuesday, March 7, 2006 3:26 AM CST

On Saturday 4th March two lovely ladies Tara and Jennifer from Make a wish foundation came and surprised Ryan with his wish, he was absolutely gobsmacked he had no idea they were coming.
He has the most amazing room thanks to the new electronics.
His face still has a massive grin on it.
Thanks make a wish.

check the photos out in the album

Thursday, March 2, 2006 2:46 PM CST

Day +105

Well Ryan is doing awesome!!!!
His counts are great and hes having no side effects of anything, hes down to acyclovir and cyclosporin during the week and has co-trimoxazole on the weekends as well, we are now weaning him off his cyclosporin and hopefully in a month he will be off that as well.
We dont need to go back for 3 weeks....yahoo, appointments are getting further and further apart.

Tuesday, February 14, 2006 3:03 PM CST

Day +89

Ryan continues to do really well, our appointments have been put out to every two weeks as hes doing so well.
He cant wait to go back to school so in the meantime he will have a teacher come to home and do school work.
I have updated the home page photo this is his new motorbike he got and he spends alot of time riding this.
That is about all nothing much has changed.

Tuesday, January 31, 2006 3:17 PM CST

Day +76

Ryan continues to do well his bloods are great.
We are on our last week of holidays and then the kids go back to school...yahoo.. although Ryan wont be going back yet he will have a teacher come into our home, doctors said hopefully he will go back this term as hes doing really well but depends if hes off some of his medications.
He has make a wish foundation coming to visit tomorrow to talk to him about his wish so hes looking foward to that.
Thats all to report really hes doing the things normal boys should be doing and having a great time.

WBC 3.51
HGB 122
PLT 201
NEUT 1.94

Tuesday, January 17, 2006 3:59 AM CST

Day +61
Well I thought it was time I got off my chuff and updated on whats been happening.
Ryan continues to do well, we are having hot sunny days in New Zealand so Ryan has been doing lots of swimming in our pool and mucking around like a normal kid he has all this energy now and can keep up with the other kids including staying awake until 1am at his friends party.He has a new mini 50cc motorbike this was a promise after he was home and well enough to ride it....he thinks it is great will post a pic soon.His hair is starting to grow fast now was really blonde at first but is dark now.
He has a bit of GVHD on his arms and cheeks so has been put on a quick dose of steroids and was put back on one of his meds that he came off much to his disgust, other than this he is doing great.
WBC 8.98
HGB 120
PLT 200
NEUT 6.80

As you can see he counts are great.

Thursday, December 29, 2005 1:26 AM CST

Day +42

Here you go Aunty Grumpy....

Ryan continues to do well, we had a lovely christmas at home and great weather to go with the day.
Ryans counts as of today are
Platelets 233
WBC 3.96
HGB 111
Neut 2.01
Doctors are very happy with his progress and how well he has handled everything.

Sunday, December 18, 2005 11:28 PM CST

Day +32
Ryans appointment went really well today they are very happy at his progress and think hes showing off now with his platelet count.
PLT 197
WBC 3.46
NEUT 1.74
HGB 110

Hes been glued to his cousins xbox since coming home and I have managed to get him outside in the fresh air to run around (something we havent seen for a long time).

Tuesday, December 13, 2005 3:14 AM CST

Day +26

Monday night we came back to hospital as Ryan was having pains where the line was up in his neck, had some x-rays to make sure there was nothing wrong all looked ok but they decided to take out the hickman line as the infection wasn't clearing.
Today Tuesday he went to theatre to have the line out woke up in heaps of pain and needed morphine they put a line in his hand for antibiotics but that tissued so they took it out and put one in the other hand, all is working ok.
Hes tender now and pain is ok, he cant wait to go swimming in our pool now the line is out a few more weeks and all should be ok to do that.

Sunday, December 11, 2005 4:02 AM CST

Day +24
Yes we are at home and enjoying it, Ryan has been kicking the ball around and swinging on the rope swing hes loving it.
Back to hospital tomorrow (Monday) to check his bloods and see how hes going will report back with his counts.

Friday, December 9, 2005 3:13 AM CST

Day +22
We are home.....yahoo

Sunday, December 4, 2005 3:07 AM CST

Day +17
We have signs of Ryan engrafting hes been off GCSF for a few days now and his counts have come up slowly.....yahoo.
Hes lost all his hair now and looks really cheeky, we have been for a few walks down the hallway so that been good for him.Ryan is taking all but one of his meds orally hes been so good.
Counts as of 4/12/05
HGB 118
Platelet 69
WBC 6.30
Seg Neut 4.41

Thursday, December 1, 2005 1:14 AM CST

Day +14
Ryans had a good day today, the swelling on his gums have gone down and hes been eating well.
We have stopped GCSF and hopefully by early next week we can see that he has engrafted, he is also starting to take his meds orally so we can come of the machine he may even be able to go out for a few hours over the weekend if all goes well.

Tuesday, November 29, 2005 2:06 AM CST

Day +12
Yesterday ryan had a very uncomfortable day his mouth was sore with very swollen gums and his hair started to fall out so he is now sporting a number 2 haircut, over the next few days i think the rest will fall out.
Today was a better day gums still sore but not as sore as yesterday he has been eating today so thats good.
Had a quiet couple of days as hes watched telly and played playstation, today he had a blood nose and needed some platelets so the phenergan sent him to sleep for a few hours, peace and quiet :)

Sunday, November 27, 2005 2:45 AM CST

Day +10
Ryan is still doing well, over the last two days he has been feeling sick on and off (hasn't stopped him eating though) his gums are a bit swollen as well.Still has plenty of energy for playing games,talking and being cheeky.
He started GCSF today so now we wait and hope to see the white cell counts increase.
I have loaded some new photos during our stay so far.

Friday, November 25, 2005 2:04 AM CST

Day +8
All is going well he is as well as the day we came in.I have noticed a couple of changes in him, one is his sleeping he is not as tired as he used to be and can still be watching tv at 11pm this is with no sleeps during the day whilst going through his transplant and the other is his eating what an animal, 9 pieces of toast for breakfast plus lunch,dinner and food in between his weight is 19.65kg hasn't increased much for all the food hes eating.
Hopefully we will see some signs of his white cells increasing in the next few days, fingers crossed.

Tuesday, November 22, 2005 7:52 PM CST

Day +6
Ryan had a good breakfast this morning and was in good spirits after going to bed at 11pm.
Had platelets this morning about half way through noticed he was having a reaction he flared up quickly the normal for him is red, lumpy and itchy then he started to cough and wheeze and then all of a sudden he was having trouble breathing he was having an anaphylactic attack, 2 nurses and a doctor trying like mad to get the ventilin mask on him was a mission being a stubbon bugger he was not going to do that but with coaxing we got it on him, took about 5mins and all was good, more phenergan and he is in la la land sleeping.Still asleep now.
Most if not all of his platelets would of been eaten up so will be having some more this afternoon.Fun fun fun...

Monday, November 21, 2005 2:19 AM CST

Day +4
All is going well Ryan is still eating extremly well, still coming second in basketball, lots of energy and good colour in his face will try to load some new photos of him while in transplant.

Saturday, November 19, 2005 2:16 AM CST

Day +2
Well we are day 2 already and things are going well, ryan still has good colour, good spirits and good energy he is still eating well so no nasal tube yet, infact he is eating so well he has me running all over the hospital getting food for him. He starts with 4 weetbix in the morning (he never ate 4 at home was 1 maybe 2) then sometimes toast, for lunch he picks at the hospital lunch and then i have to make hot chips with bread,or chicken thighs, for dinner he has the hospital food and then i either make toasted sandwiches,bacon and egg,macaroni cheese,pizza (yes pizza mister i dont eat pizza) he has even asked for butter chicken???? in between these main meals he has chocolate bars,apples,bananas,bicuits,chips,ice ceam,ice blocks,and more that i cant think of, for those of you that know Ryan this is very unusal as there was one word for him PICKY.Everything he eats has to be cooked from frozen or fresh and even then it has to be prepared specially.
His energy levels are good at the moment so his days are spent doing school work,watching telly,plays play station, and getting cheeky to the nurses we play basketball at night and YES MUMS THE CHAMPION shall i repeat MUMS THE CHAMPION.Today i bought Ryan a new pair of pyjamas size 7 yahoo for those who dont know at the beginning of the year he was in sz 4-5 he has been on growth hormone and has a good growth spurt.
Hopefully he can carry on the good health through this thanks for reading his website.

Thursday, November 17, 2005 1:33 AM CST

Day 0 TRANSPLANT DAY
Well what a good day.
Tyler went to theatre at 11.30am an hour and a half later they had 420mls of bone marrow, what a lovely shade of red it was. It went into ryan just like a transfusion after an hour there were no problems or reactions, but not long after i saw a rash on his leg within 20mins it was covering his body he was having a reaction to Tylers blood, more phenergan and hydrocortisone and a couple of hours later it was gone. Tyler is good and staying in our room for the night both are well and in good spirits, hopefully the next few weeks are good to him.
Well they are true blood brothers now....

Wednesday, November 16, 2005 1:34 AM CST

Day -1
Today was a rest day for Ryan hes had a good day spent it watching tv, eating, more eating and more eating.
Tyler had his last GCSF injection and blood test today, he did so well.Tyler will go to theatre about 9.30am if all goes well.
All up the last 9 days Ryan has handled very well and hope that the next few weeks are ok for him.

YOUR A STAR RYAN!!!!!!!!!!!!

Monday, November 14, 2005 1:39 AM CST

Day -3
Well once again Ryan is doing extremely well he has handled the cyclophosphamide and ATG well no reactions at all so far.Was sick once but i think it was a combination of nausea and eating to much chocolate, still has nausea on and off but is handling it well.
Tomorrow he is having a liver scan as hes having pains sometimes and his levels are up and down, one more day of treatment.....yahoo.
He is happily playing playstation i will be a champion at these games by the time i get out of here.
I just have to say...i am so proud of him...

Sunday, November 13, 2005 2:59 AM CST

Day -4
Well ryan had his chemo and the ATG which took about 6hrs he had no major reactions but had nausea and a headache.
He wasn't feeling to good tonight felt really sick so he sat in the shower for ages and then had something to eat, i think this is the first of the sickness kicking in he has handled the chemo reall well, we have 2 more days of treatment then a rest day then transplant.

Saturday, November 12, 2005 3:38 AM CST

Day -5
Ryan started cyclophosphamide today and handled it really well apart from a slight headache and the odd feeling of nausea hes been good, plenty of playing around in the room was even goofing around in a pink mini skirt.
Tomorrow he starets ATG and will be monitored very closely as they can have nasty reactions to this, tyler also starts his GCSF tomorrow so we have lots of healthy cells.

Friday, November 11, 2005 2:05 AM CST

Day -6
Well we have finished our first 5 days of Fludarabine and on to cycloposphamide tomorrow, Ryans had a good day been very active watched some telly and of course playstation.
He is now hooked up to the pole all the time and being monitored every 4hrs as he needs to be hydrated we have been told they normally feel really yucky on this next lot of chemo.
Hes done really well so far and takes his medicene without complaining.

Thursday, November 10, 2005 2:37 AM CST

Day -7
Ryans had a good day today, hes been busy drawing and playing playststion, hardly any nausea today, but plenty of farting he stands by me when the nurses are around so he can try and blame it on me.
No telly for me again hes still playing that playstation now.

Wednesday, November 9, 2005 1:52 AM CST

Day -8
Ryan has had his 3rd lot of chemo hes had a pretty good day, had some nausea on and off.He has been eating really well always hungry so thats good.Blood pressure has been high so they are watching that, he seems moody on and off which is understandable, wasn't feeling well tonight and is now fast asleep early night for him 8pm the other nights he still been watching cartoons at 10pm.
Well im off for some telly time yahoo no cartoons.
Night night

Tuesday, November 8, 2005 3:12 AM CST

Day -9
Ryan was awake early this morning but had a good night, needed to have a transfusion today and was sick not long after medications were given slept for the next couple of hours.Nana and Tyler visited this afternoon and Michael,Linda and Ben popped in tonight. Ryans blood kicked in about 7pm and has been bouncing around full of energy might be a long night, he has some nausea evey now and then but seems in good spirits.

Monday, November 7, 2005 2:06 AM CST

Day -10
We have settled into our room we put up some pictures to make it more brighter and will decorate it more tomorrow.
Ryan has had his first lot of chemo today, has spent most of the afternoon watching TV and feeding his face.
Will update again tomorrow.

Wednesday, November 2, 2005 2:21 AM CST

Tomorrow Thursday 3rd Ryan is having his hickman line in.
Monday 7th we start our treatment for transplant.

Tuesday, October 18, 2005 10:06 PM CDT

Ryan had another transfusion yesterday HGB 68,Neut .70,Platelets 19.We were told yesterday that they are ready to go ahead and do his transplant we have a date of the November the 7th....very scary.

Wednesday, October 12, 2005 11:02 PM CDT

Well its been a few weeks since updating nothing more has changed, we are on weekly visits checking his blood counts his last results were platelets 24, HGB 71, Neut .57.
Over the school holidays he went 4 times in one week to get his GCSF injections and now he has it once a week to keep him topped up, this coming Tuesday he is having a transfusion.
Doctors are still keen on him having his transplant this year so we are just wating for the go ahead, Ryan has been well in himself and has gone back to school.

Tuesday, September 20, 2005 9:16 PM CDT

Ryan is on weekly appointments at the moment we were at hospital on Tuesday his platelets are 20 and he is also neutrophenic .47 he had a shot of GCSF and will have them for the next 2 days then we are back to hospital to see if it has incresed his counts, he has the rest of the week of school and then its 2 weeks of school holidays.YIPEE
Ryan got a bronze medal at school on Monday for spelling he got 100 words right so on Friday we are off to assembly to get the medal.

Thursday, September 8, 2005 3:46 AM CDT

Latest update from the hospital is that Ryan will be having his transplant this year, platelets 20, HGB 83.We are back on Tuesday to have a transfusion.
There is another FA child having a transplant at the moment once he is well enough and goes home then we will be going in.They have decided that Tyler will be his donor.

Saturday, August 13, 2005 4:12 AM CDT

Ryan was in hospital on Thursday having another transfusion his platelets 23, HGB 70. They don't want to leave it to long between the transfusions as last time it dropped quite a bit. He also had for the first time platelets i thought these would be red like blood but they are yellow or to be corrected by Ryan they are gold colour.
He had a bad reaction to the blood this is his first time, he couldn't stop scratching and got very agro as the anti itch medication wasn't working it took a good hour or so before it started to help.
We went to vist Tua who has started his long journey for his transplant so hope you are doing well buddy.
Ryan is good today it is Saturday and he is sleeping over at his friends place glued to playstation im sure.

Wednesday, July 27, 2005 4:08 AM CDT

Ryan had his regular appointment on Tuesday counts were up a bit platelets 24 HGB 88 so he didn't need a transfusion he was so happy about that.Doctors have mentioned that they will look worldwide for a better match for Ryan, Tyler is a 5/6 match and they have said there may be a better match out there, im not to sure what that is about but they will go into it more next visit.
Wednesday he had his growth appointment and he has grown 3.9cm in 3 months, he started on growth hormone in April so this is great news I even had to buy some new clothes and shoes for him.
He has been in good health his eating has tripled and is trying foods he would of never eaten before.

Wednesday, July 6, 2005 8:18 PM CDT

I am here at hospital getting a blood transfusion. Narelle and George are looking after me today. Nicola stole my CC's but thats ok because she said i am allowed to use aftershave.

Tuesday, July 5, 2005 11:19 PM CDT

Had our regular appoinment today Ryans counts are dropping and seem to be dropping quicker than they have before WBC 3.35, HGB 59, PLT 22, NEUT .57, we are going back on Thursday to have another transfusion these seem to be more frequent now as well, they mentioned that they are looking to transplant in 6-8 weeks but that is all we have heard so far and should know more on the next visit.
Prince William and some of the Lions Rugby team came and visited starship hospital, Ryan had his photo with Brian Odriscal and Prince William. Prince William sat on Ryans bed and had a good 5min chat with him so that was a boost to his day.
Now i guess we are waiting for a date to have the transplant and will keep updating to let you know whats going on.

Sunday, June 26, 2005 2:54 AM CDT

WOW!!
What a holiday 7 glorious days in Fiji.
Arrived Saturday 18th June to lovely sunny hot weather as soon as we arrived the kids had there togs on and went for a swim.
The staff remembered the kids and Ryan got lots of cuddles and kisses from the girls that looked after him in the kids club.
Every day was hot and sunny some days around 36 degrees, lots of swimming,sun bathing,fish feeding and playing games.
Ryan was tiring alot easier this year with the heat and swimming but still had full on days, he was swimming out to the pontoon by himself this year and went snorkelling which is a first for him.He ate really well over there having big breakfasts and dinners which was great to see as we know how hard it can be to get them to eat.
The kids had lots of swimming and games with Nana, Grandad and Aunty Angela.We hired a golf cart this year to have a look around the island Ryan and Kirsty had a drive which was alot of fun and we caught on camera.
Kirsty spent her nights at the kids club with some friends she made, Tyler went gecko hunting and Ryan cruised around.
The 7 days went so quick and it was time to come home its 10-14 degrees in New Zealand so its cold and rainy.
We all had an awesome holiday and cant wait to go back some day.
Thanks Grandad and Nana.

Wednesday, June 15, 2005 3:01 AM CDT

Ryan was in hospital on Tuesday having his second transfusion, platelets 22, WBC 3.35, HGB 59, neut .57.
They lost his blood sample today so we had to wait ages before the blood arrived upstairs.
He is also neutrophenic so he had his first dose of G-CFS.
They wanted him to have the transfusion and the G-CFS as we are off to Fiji on Saturday and want him as well as he can be.
He was on a high last night with all that new blood hes been bouncing around bugging everyone.
Today he has alot of colour back in his face and looks good.
I will post again next week after we come back from holiday.

Tuesday, May 31, 2005 1:51 AM CDT

Today we had our appointment at haematology Ryan has been unwell for the last couple of days and is very tired.
Todays blood counts platelets 27(up from last blood test), HGB 75, WBC 2.38, NEUT 0.86 they want to do a transfusion which I have asked to get it done in a few weeks before we go away on holiday.
In the last couple of hours he has gone down hill he had a slightly sore throat thismorning and now he can hardly talk(anyone who knows Ryan this is very unusual for him)and it hurts to swallow, he's spent most off the day lying down.
Looks like he has grown 1cm in a month (maybe growth hormones are working)
Well thats about it hopefully he will be feeling better tomorrow.

Tuesday, May 17, 2005 1:59 AM CDT

Ryan is typing this journal today.
On saturday we all went to waiwera hotpools.
I went in the movie pool and watched kim possible,and went down the big long metal slide (check my photos to see me on the slide).It was fantasic.

I hope you enjoyed ryans journal today this took him half an hour to type.

Wednesday, May 11, 2005 2:30 AM CDT

Today Ryan had cross country at school they have been traning for weeks at school.Ryan of course has had trouble with long distance runs as his counts are low and he is getting very tired so if he couldn't train he would sit out. I told him he didn't have to run today if he was tired.Ryans teacher came over and said he was going to try and run one lap beacause we were coming to watch, well he did his first lap and when he reached the finish line he looked over at us and then continued his second lap he walked some of the way but finished the race and he wasn't last, he ran like a champ.
GO RYAN

Sunday, May 1, 2005 0:37 AM CDT

Yahoo tomorrow the kids are back at school no more arguing.
Ryan is going back sporting a new black eye thanks to doing who knows what, he only needs to knock himself lightly now and comes up with a big bruise due to his low counts, but he thinks its cool.
Only 7 more weeks and we will be in Fiji, the kids can't wait and neither can I.
Thanks to all who are sending messages its really cheering Ryan up.

Wednesday, April 27, 2005 2:43 AM CDT

Ryan was born 25/3/1998 he was 5 and a half weeks early weighing in at 4pound 9 1/2oz,and 43cm long.
Ryan was born with a floating thumb on his left hand and no thumb on the right,he has had surgery on both hands using the index finger and making a thumb what an amazing job they made of them.
Ryan has basically kept well it is only now we are seeing him getting tired more than he used to.
Ryan was diagnosed with Fanconi Anemia
in 2002 his complementation group is FA-A.We have 2 other kids Kirsty 9 and Tyler 4 1/2 both are non FA. Tyler will be Ryans donor he is a 5/6 match.
Doctors are anticipating that his transplant will be later this year, his platelets are 22 and HGB 77, he had his first transfusion the other day.
He has also started on growth hormone recently at the moment he is 104cm.

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