Some Pictures

Probably the last time Barnaby asks what Daddy did at work today!



Fintan also takes in a few Zzzzzzz


Fintan sees his brothers gawping and thinks it would be rude not to join in, but it's just not quite so much fun without a TV to look at!



Just look at how well Fintan is seeing the camera in this video.
It's not all that interesting, but so heart warming and encouraging to see, it's worth the 1 min 15.

Round Four

Fintan had his 4th course of chemotherapy yesterday despite suffering another line infection. He had been due to have his chemo last Friday, but as he was still neutropenic it was delayed until his blood count had improved, however, I still did not get a day off from the hospital!

On Friday morning we noticed a now familiar red patch where his Hickman Line tracks, so I did the school run and then took Fintan to High Wycombe Hospital who confirmed that he had an infection. Fortunately, the infection was not as bad this time and he only needs oral antibiotics, which of course adds it own little problem in that Fintan requires a nose tube as he will not take medicine orally. Fintan was allowed home just in time to pick up Archie from school! However, he had pulled his nose tube out within 24 hours, so James took him back to the Hospital on Saturday afternoon for a new tube and a little more sticky tape - and it is still in place now!

As Fintan's blood had recovered, we went to the John Radcliffe in Oxford yesterday. The day went really well and Fintan seemed to tolerate the chemo better than previously. He was playful and chirpy all day and never complained. The hospital staff commented on how Fintan was filling out (is that a polite way of saying he's a fatty?!) and how well his general development was coming on. This is the first chemo where Fintan has been on solid food, but his appetite wasn't affected and he managed to eat really well all day. He is off his food today, but still smiling and making lots of noise!

Barnaby came with us on this visit and seemed to enjoy himself, especially his packed lunch which was finished by 11.00 am and dinner in the Hospital canteen - Barnaby likes his food! Archie joined us after school and helped Barnaby to test run every toy in the playroom!

Fintan's next chemo is in 3 weeks time, then he will have an eye examination at the Royal London just under 3 weeks after that, followed by his 6th and last course of chemo.

Wedding photo is a life saver

Fintan's Grandad O'Brien added this as a comment on an earlier post today. I thought you might like to read it so I have added it here. It's an extract from a newspaper article he read in the Daily Telegraph, but I also found on the Sky News website.

http://news.sky.com/skynews/article/0,,91251-1301810,00.html

A photograph at a family wedding saved three-year-old Sophie Ripley's life as she posed for pictures with her twin sister Molly. Their parents looking at the pictures days later noticed Sophie's left eye had a black spot.A specialist diagnosed retinoblastoma and Sophie from Shiregreen, Sheffield, had the eye removed in a life saving operation.

Reported in the "Daily Telegraph" today 22nd January 2008.

Update

Following Fintan's positive visit to the Royal London, we had been rather worried about the fact that he was still be very sick - post chemo sickness usually lasts 2 or 3 days, but 1 week after treatment Fintan was still struggling to keep his feeds down. We took him to the John Radcliffe in Oxford on Saturday 5th Jan, as they agreed that the sickness should have stopped by now. However, the doctors decided that it was just a combination of treatment, his central line infection, antibiotics and having undergone a general anaesthetic. We came home, still a little worried, but by Monday he was a different boy! He started eating, not just a few spoons of food, but 3 good meals a day; until now we had been struggling to get Fintan to eat solids, but now he can't get enough. He even had a taste of his very first ice cream today (which he stole from Mummy!)



Last weekend, my family come up from Southampton and Cornwall; it was lovely, especially as Fintan's Uncle Simon and Auntie Jo haven't seen him since he was diagnosed.

Fintan and his cousin Jess.


In the last couple of weeks, Fintan's physical developmental progress has come on by leaps and bounds. He seems to have a new found confidence and is even sitting without any support. His latest trick is dropping objects on purpose - not a lot of fun for Mummy!

Fintan was due to have some more chemotherapy tomorrow, but he has been neutropenic for a week or so (when part of his blood count is very low and makes him at risk of infection) and he hasn't recovered in time. He will have his blood count taken again on Monday and, if his blood has recovered and the doctors are happy with the results, he will have his chemo on Tuesday.

I will try not to leave it so long between posts, and I hope you all haven't been worrying too much. It's been a busy few weeks with one thing or another.

Bye for now.

We're all feeling very optimistic...

Fintan, Barnaby, Fiona and I have just got back from a visit to see Mr Hungerford at the Royal London Hospital. Fintan had his eyes examined to see how he was responding to the chemotherapy and Barnaby to ensure that he had not developed the condition.

It was a very positive day. Firstly, Barnaby has not got any signs of Rb at this time; Mr Hungerford will check him again in 6 months, but we are told it's unlikely Rb will develop in a child of his age. Barnaby was very brave when being given the anaesthetic. He was a little grumpy when he came round, but soon got his appetite back and ordered me to fetch him some lunch!

It's fabulous news again with Fintan; in fact I'm overwhelmed with happiness writing this for you. He is responding really well to the chemotherapy and the tumours on his retinas are reducing and calcifying nicely. Mr Hungerford spoke to us after examining Fintan's eyes and told us that he is very happy with the progress and that this is after only 3 courses of chemotherapy. He also gave us some before and after photographs of Fintan's retinas which clearly show the improvement. I have scanned and uploaded them below. I won't try and explain them too much as I am not an expert, but the top two pictures are the 'before' images. You can see the three large round whitish blobs which are the tumours. In the bottom two 'after shots', you can see that the tumours are more chalky and appear less dense. We were quite shocked at the size of the original tumours, but Mr Hungerford explained that these are close-ups of the centres of the retinas, the retina is much larger so the tumours do not cover the whole surface; however, the centre is responsible for detailed vision, which is why it affects the sight so much.

Fintan's Retinas (click the image to see a larger version).


Here are a few photos from today:

Fintan sleeps off the anaesthetic.


Barnaby soon bounced back to his normal, playful, self.


One very tired and worried, but still very beautiful and brilliant mum.


Clearly the headphones are not for Barnaby sized heads. But not to worry, Daddy's gloves will hold them in place (for the nerds at Motorola, they are MC70 gloves!).

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.

Update

Just a short update. After the little blip at the beginning of the week, things have calmed down. Fintan is keeping well (by that I mean he is avoiding hospital!); he is feeding and sleeping better and, of course, still smiling. He is having his blood counts checked every 2/3 days at the moment, as now is the time that his immunity is at risk of becoming too low to protect him from infections, etc, but it should start rising again soon - in time for his next dose of chemo in 10 days time.

The Light's Fantastic

Sometimes, when I'm holding Fintan, he looks at me and smiles. It really makes me feel good. I think, maybe he can see more than we thought...but then I realize there's a light over my shoulder!

Fintan loves lights.

Spot lights, street lights, strip lights, and especially sun light.

Here's a little video of Fintan with his favourite toy; a musical drum with, yep, lights. As you'll see, he likes it so much, he wants to eat it!

Mummy's Boy

Fintan had a pretty good weekend, his appetite is beginning to improve and he even managed to eat (slurp!) a fair amount of puréed pear yesterday! This is far better than the rest of us managed - Barnaby brought home a nasty sickness bug, which he kindly passed onto James, Archie and then myself...........I was going to say Fintan had managed to avoid the bug, but I have just spent the afternoon at Wycombe Hospital to have him checked out as he was quite sick this morning (probably bug, not chemo side effects). They checked his blood counts, but fortunately his platelet count is high enough and he will not need a transfusion - apparently this is a perfectly normal side effect of the chemo.

I find the responsibility of caring for Fintan at home very stressful, but I wouldn't have it any other way - I feel completely lost when he is not with me. I am sure we will all get used to the new routines and unplanned hospital visits, etc, it is all just a bit new and scary at the moment. We are receiving so much help and support from our family and friends and the hospitals are only a phone call away - thank you!

This little video clip of Fintan was taken before his treatment started - I think we have a budding piano virtuoso on our hands!

How I Feel About Fintan's Illness. By Archie.

Archie wanted to let you all know how he was feeling. This post is Archie's thoughts in his own words.

"I feel pretty sad about Fintan's illness actually.

"What scares me the most about the illness is him going to hospital. This scares me because he has to have his special medicine. I don't like it when mummy is very sad when she comes home from the hospital and she cries. I feel sad for Fintan and mummy when she cries. I think the medicine they are giving Fintan is horrible but I understand that he has to have it.

"The things in Fintan's eyes are horrible. I wish he didn't have them.

"Sometimes mummy and daddy get upset at times, I think this is because they are worried about Fintan.

"I like it when Nanny and Grandpa, and Grandma and Grandad look after me and Barnaby. It's fun and nice to see them. Nanny made a house with me, it was brilliant. I call the house The Triangle House.

"I'm not sure how Barnaby feels about Fintan's illness; I think he is worried about it too.

"I wish that Fintan's eyes were fine; I hope he gets better soon."

First Dose Of Chemotherapy: Part II

On Wednesday, Fintan had his first dose of chemo, it was administered via a drip into his newly fitted line over 5 hours or so. As usual, he was great, just played, slept, ate, pooed and peed all day. There is a short video of him playing under his play-mat whilst getting his drugs; you can just about see the drip in the back ground.

You may have noticed a yellow "TOXIC" label on the drip. Apparently this is no exaggeration as we have been supplied with a box of surgical gloves to wear when changing his nappy! I always thought his dirty nappies were hazardous, but didn't think they would ever burn my skin!

Fintan has reacted fairly well to the chemo. He was a little groggy yesterday, but today he was a bit sick too. We think that the anti-sickness medicine they gave him at the hospital has worn off, and he doesn't like the stuff they gave us to give him, he has to take it orally and it's making him gag; it is somewhat ironic that the anti-sickness drugs are making him vomit. Fiona is actually at the hospital now with him as I type this to get some pushed into his line so he feels like eating a bit more tomorrow.

All in all, his first lot of chemo wasn't too bad and he seems to be faring pretty well on it.

Fintan Had His Central Line Fitted

Fintan had his central line fitted today, the tubes they will be using to administer his chemo drugs and to take blood samples from, over the next months. It was another long day, and Fintan again had to go for most the day without food, and yet he didn't really make a fuss at all. Fiona has stayed with Fintan at the John Radcliffe in Oxford tonight and he will be having his first lot of chemo tomorrow.

This morning Archie and Barnaby had a nice cuddle with their brother before he left for the hospital. They are very worried about him, but are coping extraordinarily well. Barnaby knows something is up, and is asking questions about Fintan's eyes, but doesn't really understand what's happening. Archie is a sensitive boy and is very worried about Fintan, but I think he is also enjoying the attention he is getting from the family, and is also enjoying telling his Nanny how to do everything!



Before Fintan was taken down to the theatre to have his line fitted, he was put in a little gown, and it looked so sweet I had to take a picture...

I have to say, being on the ward today, there were a few other kids there who were in the middle of their treatment. Although these kids had lost their hair, and a couple needed help walking about, so had wheel chairs or crutches, they were very happy, and just got on with it all. It was reassuring to see how well they coped.

There were a couple of things I found hard today; it was hard to have to hold Fintan down while the doctors struggled to find a vein to take blood samples from, it was heart wrenching to see him fight the anaesthetic gas when he was put to sleep, and it was also hard when we were told they prefer to insert a central line, because administering the chemo drugs through a cannula in the hand is unpleasant as the drugs are so toxic, they would burn the skin...what the hell is in these drugs?

As a parent, this whole chemo thing is tough, nowhere near as tough as it will be for Fintan, but to consent to something that you know is going to make him feel really shit, especially when he seems so fit and well, is hard.

Fintan And His Brothers

Fintan, Barnaby and Archie.