Update

After a lovely family Christmas where all three of the boys had a very exciting time, Fintan had another dose of chemo at the John Radcliffe in Oxford last Friday. Unfortunately, things didn't go as smoothly this time. Before we left for the hospital in the morning, we noticed that the skin on Fintan's neck was looking red where his hickman line tracks. The doctors decided that he had a skin infection; Fintan still had his chemo and was prescribed some oral antibiotics to help fight off this infection. This created another problem, Fintan will not take medicines orally - as soon as we give him anything, he just vomits it back up again! So we all decided that the best thing was for Fintan to have a gastric tube fitted so we could give him his antibiotics, Calpol and anti-sickness medicines through this. Fintan has not really looked ill so far, but having had the tube fitted, makes it more obvious that he is poorly.



We got back from Oxford at about 6.00 pm, only to discover that Fintan had a raging temperature, he looked awful and was limp and grey. We were back at Wycombe Hospital by 7.30pm; he was examined and bloods taken and released at about 1.15am as there was no obvious reason for his fever, he was quite happy and his temperature had come down. However, we were back at Wycombe Hospital by Saturday afternoon as his temperature had rocketed again. It was decided that he must have had an infection brewing in his hickman line and when they accessed it in Oxford to administer his chemo it pushed the infection into his blood. Fintan was released Saturday evening, but we are now in and out of Wycombe Hospital on a daily basis to have antibiotics administered intravenously as the oral antibiotics were only for skin infections and would not have helped fight the line infection.

Anyway, Fintan no longer has a temperature and seems to be fighting off the infection. He also made the decision to remove his gastric tube, as it is no longer required, and did so sometime in his sleep last night!

On Wednesday, Fintan and Barnaby go to the Royal London Hospital to have their eyes examined by Mr Hungerford,the retinoblastoma specialist. Hopefully we will find out how Fintan is responding to the chemotherapy. Barnaby is being examined to ensure he does not also have Rb. We will update you on how they got on later in the week.

Finally, here are a few pictures from Christmas and Friday's day out at Oxford. Happy New Year and here's looking for a good 2008.


Fintan opening his stocking.



Fintan showing the diversity of the NHS sick bowl/hat!



Barnaby can't eat his Christmas dinner any faster!



Now which toy has the brightest lights?!!



Archie tells his Christmas Cracker joke...heard it!



It's a chair not a potty!

Merry Christmas

I just want to say a quick Happy Christmas to everybody, and to thank you all so much for your support and kind words over the last couple of months. I hope you all have a great time and look forward to seeing you all soon.

I'd also like to add my thanks to Russell and his band, not only for raising awareness of retinoblastoma, but also for some top brass, and for inviting me to the Christmas evening at a pub where he was collecting for CHECT. The tiny village pub was crammed with revellers all joining in with the music, it was wonderful fun, but also, the only time that I have squeezed into a pub, only to be greeted by a stranger who asked "Do you drink beer?", he then called to the bar to get me a pint! Fantastic! I'd love to disclose which pub this was, but I was sworn to secrecy by one of Russell's fellow band members not to tell anyone about the place in fear that it's local atmosphere might be ruined!!

Finally, as many of you and your friends will be taking photos this Christmas and New Year, please take a moment to check that none of the kids are getting a white eye reflection. If you are not sure what to look for, take a look at this link: http://www.chect.org.uk/page.php?id=9&s=0. Diagnosing this disease early makes all the difference.

Merry Christmas.

Full of Beans!

Fintan has just given us an early Christmas present - he has eaten some solids!! (Those of you with children will have some understanding of the trials and traumas of weaning.) After several weeks of steadfastly refusing solids of any sort, we have finally found something that Fintan will eat - Baked Beans! Even if this is all he will take for a week or two, it's a start. However, Archie, who is a big Dr Who fan, is concerned that too many beans will make Fintan fart like a Slitheen!




A big thank you to Russell Barr and his brass ensembles for raising awareness of Retinoblastoma and collecting donations for CHECT. Also thanks to Hamilton Primary School for organising collections at their Christmas productions.

Wishing you all a Happy Christmas!

Editorial Update

Further to James' update yesterday and his comment "yes, Fintan is looking at the camera" before you all start feeling sorry for him, James' picture was not very flattering and Fintan is, in fact, a very handsome boy!!

A Little Good News

Over the last week, Fiona and I have noticed that Fintan seems to be seeing more. He is fixing and following on objects we hold in front of him, even if we move the object relatively quickly. We are so pleased with this development, it makes the hope of him being able to read and enjoy the things we do more of a reality. Until Fintan goes back to the Royal London for his next eye exam just after the new year, we cannot be sure if this is because the chemotherapy is reducing the tumours, if this is purely down to him adapting to what he has got, or even if it is simply normal developmental progression; either way, it's a real step forward and we are very, very proud of him.

A couple more recent achievements: Fintan is now almost sitting on his own, and is even saying "Daddy" :-) I have to admit, it's more of a "Da.........DEEE", but I know what he means!

There will be video evidence soon.

Finally, here is a picture of Archie, Fintan and Barnaby to wish you all a bit of Festive cheer. I hope you appreciate it, it only took me about 200 shots to get them all to finally look at the camera, and yes, Fintan is looking at the camera ;-)

Update

On Wednesday, Fintan had his second dose of Chemotherapy. It was another long day, but Fintan was really good as usual. He seemed more bothered by it all this time, occasionally throughout the day he would suddenly get upset and squirm about as if he was uncomfortable or in pain. This was hard to see at times as there wasn't much we could do to comfort him. He has also been more affected by the sickness this time.

To the right is a photo of Fintan in his hospital bed. I can't tell if he is looking at his infuser with the respect that it is helping him, or with contempt at the discomfort it's causing him.
Archie and Barnaby came over to visit him in the afternoon, after a quick hello to make sure Fintan was OK, they thought it would be a good idea to make sure the play room was in good working order...it was.
Fintan has discovered that he can yelp (kind of like an excited American baseball fan "whoa, yeah"), this is all very amusing to him, especially at 10 o'clock last night when Fiona was trying to get him to sleep!

We are all getting very festive here, the tree is up and decorated; and chocolates have been duly dispersed around it. Archie and Barnaby seem to be most interested with this addition, and keep reminding us of their whereabouts. Fintan on the other hand likes the fairy lights...nice and bright, and hundreds of them.

Fintan is next in the Hospital between Christmas and New Year. The good thing about that is it means that he will be hopefully be feeling at his best for Christmas Day.

Anyone For Cheese?

Fintan isn't interested in taking any solid food whatsoever, anyone got any suggestions? However, he does love to have a good gnaw of his feet...I think the sock fluff between his toes is a real treat!

Next Dose of Chemo

Tomorrow, Fintan goes into the John Radcliffe for his second dose of chemo. Hopefully this time will go as well as his first dose, but I guess we have to expect the effects to be worse this time round as we are told the medicine is accumulative.
Tomorrow afternoon, Archie and Barnaby are coming to the hospital to see their little brother, but also to see that it's not all that bad and that he is in really good hands. We are hoping it will reassure them, and make them feel a little less scared when he goes off for treatment.

Since his first dose, Fintan's has had his blood counts taken regularly, as Fiona mentioned in her last entry. When they take the counts, they look at the haemoglobin, white blood cells, neutrophils and platelet content in his blood (I'll let you look them up on wikipedia for an explanation!!). If any of these are too low, they may decide to either give Fintan some antibiotics, or do a blood transfusion in order to give him a boost and help fight off infection, or stop him bleeding etc. Thankfully he's proved to be a strong little lad, and his counts never really got too low. Let's hope he continues this way throughout the rest of the treatment.

Fintan has had a cold the last few days, so as those of you with kids will know, this means loads of snot, but as always, Fintan has still been smiling and giggling through it...nothing seems to faze him.

Things are starting to get a little more normal at home now. I have been getting back into work (btw, thank you to everyone who has been covering for me while I've been out, it's been a real help), Fiona has nearly done all the Christmas shopping, it's a good job she's organised, if it were down to me I'd be running around the week before, for sure; and the boys are being nagged to switch off the TV and to finish their dinner...so business as usual really.

Finally, thanks to everyone for their comments and emails. Your thoughts really are a help and very much appreciated. I shall update you all again after Fintan's day at the hospital tomorrow.