Welcome to Fletcher's Diary

while the last year has been memorable for mainly the wrong reasons, it has also seen the emergence of the new, improved Fletcher Falvey.

a Fletcher with relentless, boundless energy, who can walk for hours and get up the next morning and want to do it all again.

a Fletcher learning and understanding at a rate that threatens to put his sister's nose out of joint. wanting to know about the clouds, his family, why the tortoise poo's from it's tail, his questions are endless. then he wants to know all that again but in spanish.  

daddy had to sleep in this with him that night!

an articulate, warm, friendly little man, my friend.

we never saw all that before, it didn't happen. it is now though and that makes it all the more special.

all's well.

we couldn't actually wait for the results for a month so we went to the hospital last week to see whether they could give us a clue and thankfully they let us know there and then - no change.

a bit cheeky i was thinking, just turning up without an appointment and asking them to look over our case, but as always the nurses and doctors are more than willing to help out. i've started to know their names and they all remember Fletch when we go there.

it is such a terribly tragic place - the pediatric oncology consultant's office - i sit there terrified every time, knowing that people can receive the most crushing, devastating news behind that door. i see the fear in the eyes of the other parents as we nod solemnly at each other, united in desperation, praying for the 'all-clear'.

incredibly Fletch knows it as the place where the 'nice doctors' are. i genuinely think he likes it there with all of the balancing, coordination games they get him playing and of course, the attention.

Dr Acha, tells me that from his perspective Fletch's recovery is going very well. At this point my dread disappears and is replaced by joy - instantly, with no in-between stage. it is giddying and makes we want to hug Dr Acha and his staff, to invite them all to my house to dinner, to give them gifts, buy them drinks. now it is me and not Fletch who does not want to leave. but i do. all the while wondering if the doctors and nurses can fully understand the significance of what just happened?

Fletchers been poorly on and off for a few weeks now. took him to the doctors last week as he had a cough but they didnt think it was an infection or anything so he just had some cough medicine. it didnt work and the cough didnt go, by sunday he seemed a bit better so we went out and then he was sick and looked really poorly while we were out. we were very worried and didn't sleep a wink sunday night. back to the doctors monday and they found that he had bronchitis so he has 2 inhalers and antibiotics. it makes sense, he used to get it all the time when he was a baby and it often made him sick and very poorly looking. day four of meds today though and theres only a very slight improvement. he is so good though, he doesn't complain about anything, we had friends over visiting so they came round and all the kids were in the pool but he didn't complain at all that he couldn't go in. i would just love for him to be healthy for a while and not miss out all the time, he missed the last week of school which was all fun stuff. im hoping he will shake this illness and be able to enjoy the summer.

we are still awaiting the MRI results which we are meant to get on the 19th july. i must admit my stomach goes over everytime the phone rings incase its the hospital as im sure if the results were bad they wouldn't wait the full month? the MRI in itself was not very nice for Fletch, the couldn't find his veins again but spent about 5 minutes rooting around in each arm with a needle, it was awful. one positive though is they finally used a vein near his thumb which was easier so we will keep that in mind for future.

next MRI booked for friday morning, not the best birthday present ive ever had but nevermind. i am hoping they wont sedate him again this time as he is meant to be doing a dance in the evening at his end of school party and it would be lovely to see him on stage. the follow up appointment is booked for 1 month later, its usually not such a big gap in between but i think the idea is that his PET scan wasn't too long ago and he is doing very well. if they aren't worried then niether am i! i really hope its not such a struggle to find his veins this time, it would make it so much less traumatic for him.

eye appointment this morning, very uneventful, we had the grumpy doctor who doesn't speak. no idea how Fletchers eyes are as he said nothing to us. all we know is we have to go back in a month and Fletch has to use eye drops leading up to the appointment.

physio on thursday, changed from today as time would have been too tight. although i have noticed a vast improvement with his balance its still not perfect, also he is still weaker on his right side so i think the physio will be really useful for him.

Fletch in himself is really happy at the moment and shannon seems to be happier at school. however i am still struggling to adjust to normal life, i have felt unsettled since we returned from America and i have no idea why? all i know is that i cant wait to get back there in october and have our meeting with Dr Chang. i have lots of questions about Fletchers tumor but no-one to ask and i certainly wont be looking on the internet for answers, not if i want to sleep at night anyway.

Fletcher starts physiotherapy a week monday, we have to go to the hospital where he was diagnosed as he needs rehabilitative physiotherapy and they don't do it locally. Straight from his physio we have to go to malaga for his eye appointment.

I had a message left on my phone on wednesday calling us in to the hospital in malaga with his oncologist.  we couldn't understand why as we have an appointment booked with them for next week so of course we both started to worry a little bit. we saw a lovely woman doctor and she explained that the appointment was in place of the one we had booked. Fletcher cried the whole way through the appointment even though the woman could not have been nicer, he wouldn't do anything she asked either. we also learned that his MRI will be coming up this month, the reason for the delay was the PET scan results. as the results were good it wasn't necessary to have an MRI so soon after. he will also be getting his hearing tested soon.

life is as normal as it can be at the moment, all the excitement of Fletchers birthday and family visiting is over. ive finally started sleeping again and am finding it easier to relax. Fletcher is very happy,(except when in a doctors office) he is very interested in learning spanish and is constantly full of questions. He still cries when he goes into school but seems happy when he comes out. i am looking forward to the summer holidays, which start in about 2 weeks, to have him home all day. i still miss my little friend during the day.

Fletcher is 4 today! his eagerly awaited birthday is finally here. Fletch has opened all his presents, which were all wrapped up and put in a mickey mouse tent, and he is now playing with them all. he seems a little bit overwhelmed but happy. he was concerned this morning that his hands weren't any bigger because he is a big boy now.

a day of fun is planned, going to the swimming pool a bit later at nannys hotel where he will open yet more prezzies, ending the day with a meal out so that Fletch can have a big plate of fishies and a huge ice cream.

everybody is happy today, no worries at all, oh except the fact that we may have to move to a bigger house to fit all his presents in.

happy birthday beautiful darling boy xxxxx

Fletcher had his birthday party at our house yesterday, he had a great time. it was lovely to watch him laughing and playing with his friends and his excited little face when playing party games.

He came in our room this morning and said "im 4 now!", he was a bit confused and didn't realise its not his birthday until tomorrow. I cant wait to see his face when he sees all his presents. i think i will spend tomorrow feeling very lucky, there were quite a few times last year when i didn't think we would make it here.

Fletcher is VERY excited about his birthday and his party. health wise he is doing ok, he had a bit of a temperature in the week so we kept him off school one day. im a little concerned about his hearing though, he seems to be struggling a bit to hear sometimes. i will definately be speaking to his doctor about it at his next oncology appointment. we still haven't heard from the hospital about his next MRI or eye appointment, we think they have forgotten, so Noel will have to go to Malaga next week and find out what is happening. although his eye does look alot better its not perfect and we were meant to have an appointment to discuss whether he would have patches again, or glasses?

Fletcher is in good spirits, lately he tells us all he loves us very often. he is such a sweet boy, its so lovely to see his smiley little face first thing in the morning and last thing at night when i tuck him in. only just over 4 weeks left of school left now, as much as i think he enjoys school when he is there he still doesnt like going in and cries nearly every day. i cannot wait for the summer holidays, i miss him so much when he's at school and love having them both home. it's boring without them!

im still not sleeping but making a big effort to think more positively. Noel and i are going to go to councelling in a couple of weeks run by a local cancer charity. i think it will be really good for us to be able to talk to someone. i remember how much the support groups at MPRI helped so i am looking forward to it.

its all quiet on the Fletcher front. we are waiting for a few appointments but have none booked at the moment. Fletcher is still doing well, his hair has nearly grown back around his scar and his balance still seems to be ok. Shannon is good aswell, she seems a bit happier at school which is a relief.

ive spent the last couple of months searching on the internet for other families going through the same thing. i thought that it would be good to try and help people and spread the word about proton therapy. i also thought it would be nice for people to have someone to talk to who has been through it and be able to answer questions about treatments ect... i know how it feels to have so many questions and not always know where to get the answers from.

i was also interested in finding people who have beaten ependymomas. however im going to stay away from the internet for a while. i find that i cant sleep again and when i do i keep having really awful nightmares about Fletcher, some about being back in hospital, others about phone calls from doctors bringing bad news. ive woken myself up crying a few times, the dreams feel so real. while ive been looking for people who may need my help ive got to know a few other childrens stories and in a lot of cases i cant help feeling that we are lucky but this makes me feel that maybe there is more to come, that we have got off lightly (compared to others), that maybe we wont be so lucky in the future. i know i have to stay positive but the thoughts are there and they wont go away. ive seen families where the children have lost their battle, some were even clear for years before it came back and that scares me so much.  so ive got all these awful thoughts going round in my head. im scared to say any of it out loud so i haven't even told Noel how im feeling. i hate feeling scared all the time but i just cant seem to switch off. i cant be bothered to see friends any more really as there's so much in my head and i feel like i have to pretend to be happy all the time.

ive been restless since we got back from america and i have been thinking about moving but when i really thought about it i realised that i cant run away from this and it will be with me wherever i go. im just going to have to find away to live with this constant worry without driving myself insane.

on a more positive note my brother and his fiance have been over for a week and its really helped having family around. i just hope that the volcanic ash doesn't interfere with the rest of my family coming over in a couple of weeks for Fletcher's birthday. i miss my family and need some time with them.

everything is good. Fletcher seems to improve daily, his eyes look better, his balance is better, he is still gaining weight and he is getting more independant. It was mothers day here yesterday and for me it was definately the best one yet. two happy healthy children giving me cards and kisses in the morning, what more could i possibly want.

i remember one of the millions of things i worried about with all whats happenend to Fletcher was that he would change in himself but he is still the same smiley happy little boy only he is healthy too now. we are all just looking forward to his birthday now but no-one more than him, everyday he asks "is it my birthday today?". bless him.