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.

First Dose Of Chemotherapy

Tomorrow Fintan is going into the John Radcliffe for his first dose of chemotherapy.

He will be having a hickman line fitted in his chest, this will be used to administer the drugs throughout his treatment and to take blood samples from. We are hoping to have a special line thing fitted (sorry, I can't remember the name). Normally the line has an exposed plastic end which can get pulled or in Fintan's case, probably sicked on! The other type is under the skin so is not exposed. The downside is that he will be pricked every time he has blood samples taken or when the drugs are administered, although they will numb the area with "magic cream" first.

After having the line fitted, if all goes well, he will have his first does of chemotherapy. Fiona will stay with Fintan over night, he will hopefully be allowed home on Wednesday.

I have to say, right now I am feeling very scared for my little boy, I get the feeling he is going to be braver than me tomorrow.

Fintan's First Visit To The Royal London

Last Wednesday, we took Fintan to the Royal London Hospital in Whitechapel. The visit was to allow the retinoblastoma specialists to examine Fintan's eyes whilst he was asleep under general anaesthetic. They were looking to confirm or discount Mr Benjamin's diagnosis of Rb and if confirmed, they would decide upon the prognosis and the course of treatment.

Fintan was an absolute angel. He was not allowed anything to eat after 8am, his procedure was not until 3pm, and yet he did not make a fuss, he did not cry the place down, he just contentedly played all day. If it had been me undergoing the examination, I know I would have been complaining!

At around 7pm, we were asked into a room where about 7 medical people were waiting; they were the team involved in making the diagnosis. Mr Hungerford, the world leader in retinoblastoma, then proceeded to tell us that Fintan does have bilateral retinoblastoma, a cancer which develops in the retina. He said that the success rate for treating Rb is excellent, in fact we are told that in 25 years, Mr Hungerford has not lost a patient. We were told that because Fintan has tumours in both eyes, they would first be treating him with chemotherapy, after 6 courses of chemo, if the cancer has not been killed they would re-evaluate the treatment. The tumours are growing in the centre of Fintan's retinas, so his prospect for detailed central vision is poor, although he should have reasonable peripheral vision. This will be useful for navigation and independent living and he may well be able to read large print, and perhaps smaller print with the help of a low vision aid and good illumination.

Fintan will be having his chemo treatment at the John Radcliffe Hospital in Oxford, this will be fortnightly. Each course is three sessions of chemo, each lasting 7 hours. Just before the 3rd course he will go back to the Royal London and have his eyes examined again. The treatment will last about 6 months in total. During his treatment, his hair will thin and he will feel crap, he will also be susceptible to colds and infections when his blood count is low. But, apparently the chemo protocol used for Rb is not as bad as some of the other cancers and children "thrive" on it.

Wednesday was a physically and emotionally exhausting day, but both Fiona and I now feel much more positive about the outcome of Fintan's treatment.

The Worst News Possible

A little over a month ago, Fiona asked me if I thought Fintan was developing a squint, I looked and I was unsure as baby's eyes often look a little squinty. However, I had noticed that his eyes sometimes jittered about rapidly. Fiona pointed out what we had noticed to Fintan's health visitor, and thankfully, she recognised the jittering as something they call nystagmus and referred Fintan to see the GP. She in turn was not happy with Fintan's eyes along with a small lump which had developed on his temple. She decided that Fintan should see a paediatrician. At this point Fiona and I were getting increasingly concerned with Fintan's eyesight so decided to make use of the private medical care I receive through work. Fintan then saw Dr. Brown at the Chiltern Hospital. Dr. Brown took a look at the lump on Fintan's temple and decided to have it X-Rayed (the results of which showed it not to be of concern), he was also not concerned with the flat shape to the back of Fintan's head which is caused by babies laying on their backs. Dr. Brown was not happy with Fintan's eyes though and decided he should see the ophthalmologist.

On Friday 2nd November, Fiona and I took Fintan to see Mr Benjamin, a consultant ophthalmologist at the Chiltern Hospital in Gt. Missenden. Both Fiona and I had thought we had prepared for the worst possible news, we had thought that perhaps Fintan was losing his sight, and that he was going blind. Mr Benjamin sat Fintan on Fiona's lap and took a look into his eyes with a special pair of goggles. It took him only a few minutes, he then looked us in the eyes and said that there was no other way to say this, but Fintan has tumours growing on his retinas.

There are no words that I can find that can describe how it feels to be told your 5 month old baby, your perfect little bundle, has cancer.