Fletch is still feeling tired all the time and he seems to get really down at night. its horrible to see him so upset. last night he was crying again at bedtime and when i went in to comfort him he was saying that he didn't want to die, it was so sad. i don't know why he would be saying that? we have his MRI on the 27th and it cant come soon enough, i need (touch wood) the reassurance. We than have a meeting with his specialist on the 1st so we cant discuss Fletchers tiredness etc... Dr Chang (his doctor from America) has mentioned that Fletcher needs to see an endocrinologist to make sure his hormones are ok as this could be an explanation for his tiredness. well hopefully we will find out soon.

tired, tired, tired!!

Fletchers been quite tired lately. i'm thinking it could just be him getting over the chest infection he had over christmas, hope so anyway. we had to go to the emergency doctors on christmas day as he was so poorly, he got antibiotics though and they started to work quite quickly. he was able to open all his presents and have a nice day. since he went back to school he's found it a bit of a struggle getting up and going. we've got his next MRI in three weeks so until then i will just keep his diet healthy and make sure he gets enough rest.

no change!

Fletcher had his MRI last week and today we went back for the results. as we walked into the room i was very scared as there was a second doctor in the room, a neurosurgeon, straight away i feared the worst. thankfully they were quick to explain that he was just sitting in on the appointment and that there was no change to the residual tumor. that's when i breathed again and was able to relax. it does get easier with time but obviously going to get the results is always nerve wracking. both doctors were very pleased with how Fletcher has continued to improve and do so well. the surgeon explained that were the tumor to grow he feels confident that he would be able to remove it (or most of it) as its in an accessible place. its hard to think about what might happen should the tumor grow but i would be a fool to never think about it, i feel happier knowing all the options available to us and being ever so slightly prepared. we also spent some time talking about how it would become apparent that the tumor was growing (were it to grow), its comforting to know that in the 4 months between scans the tumor would not be able to do too much damage. Fletcher will continue to be monitored closely and his next MRI will be in 4 months time. i do feel that Fletcher has had very good care throughout all of this and continues to do so, we've been very lucky. so that's that for another 4 months. Fletcher continues on with his life blissfully unaware of all this. he loves school and is a lovely happy little boy. he doesnt remember having a poorly head.

birthday boy!

Fletcher is 5 now! he was 5 on the 31st of may. we had to count down the days for about 2 months leading up to it, he was so excited! he had a lovely day, he had some friends round to play and have some party food. in the evening we went out for dinner with nanny, grandad, uncle john, uncle glen and charlotte. Now that Fletcher is 5 he thinks he is all grown up and tells anyone who will listen that he's a big boy now. when i tucked him in the night of his birthday he said "thankyou for a lovely birthday mummy" that made my day.

MRI time again!

Fletcher had his first MRI at the Royal Marsden last thursday. this may sound strange but it was actually quite an enjoyable experience!? we walked in to the friendly ward with the smiley nurses who informed us that they would put some magic cream on Fletchers hands before they inserted the needle for the contrast. Fletcher then had time to play in the play room and make lots of lovely pictures. we went through to the doctor and she put the needle in, first go, and Fletch didn't feel a thing. why have we never heard of this magic cream before! Fletch was all smiles and told me it didn't hurt at all. off we went to the MRI machine and yet more lovely nurses. i had been told to bring some music for Fletch to listen too whilst inside the machine so he went into the machine for about half an hour listening to Taylor Swift (i chose something calm because fletch does love to sing and dance but needs to keep very still in the machine). we left the hospital feeling very happy and Fletch had his bag of sweets for being such a brave boy.

today we have been back to the Royal Marsen to get the results - NO CHANGE- my favorite two words in the world. we will be going back in two weeks to see an eye specialist as he does still have a few problems there and i need to book a hearing appointment.however again the Doctor is very pleased with Fletchers progress.

its always a bit strange after i get the results, i don't feel happy straight away? i feel relieved but not happy. maybe it takes a while to sink in but its hard to feel happy at all after spending time in a children's cancer ward. i certainly appreciate all i have and how far Fletcher has come in the last 18 months, not just today, everyday. it certainly changes your outlook on life and makes you realise what's important.

Fletch as usual carries on being the adorable, kind, thoughtful little boy he's always been. everyday waking up with a smile on his little face. he's doing well at school and has recently started playing football after school, which he loves. he has decided to be a Chelsea fan!

four months untill the next MRI but only two weeks to the little mans 5th birthday.

new doctor

Fletcher had his first appointment with his new pediatric oncologist on monday at the royal marsden hospital. until we got there i wasn't sure why we had to go all the way to surrey but upon meeting the doctor i understood, he is a specialist in ependymomas. i was very impressed and Fletch liked him too! Fletcher will be having another MRI sooner than we thought as the doctor is keen for him to have his spine checked because its been over a year. so the next one will be in about 3 weeks.

although i was pleased with the appointment it kind of brought it all back, i had to go through it all from the very beginning. we also discussed treatment options incase the cancer comes back which left me feeling both petrified and hopeful at the same time. i was informed that children that don't manage a full resection in surgery are to be monitored very closely as 50% have recurring tumors, i didnt want to hear that. i dont ever want to think about that happening. its all very scary but at the same time i feel we have the best care available.

my mum drove us to the appointment, it was her first time on a childrens cancer ward and they are obviously very sad places to be. we both left there feeling very sad but at the same time lucky for all we have. 

Fletch is the same lovely little boy, full of life, doing well at school and thankfully unaware of all the people worrying about him.Fletch and shannon in new school uniform

no change

Fletchs last MRI was no change again, very pleased. as there was such a long break between MRI's i really was getting worried. its a big relief and now we dont have to worry for a while.

andrea has started to show signs of strain thoughnot fussed by all this, just wants to have fun

the waiting game

i am really finding it hard this time to wait for Fletchers results. partly because its been almost 6 months since his last MRI (longest between appointments yet) and partly because im a little bit worried about Fletcher. he has been complaining about pains in his legs and he seems a little confused sometimes. this morning it was like he didn't know what i was saying to him? i suppose it could be his hearing, i will be making an appointment to get that checked out as soon as possible. 6 days until we get the results, its going to be a long 6 days.

at last Fletch gets his MRI.

we had to nag quite a lot as there seems to be a communication problem between the consultant and the receptionist booking the scan's. so we end up with about 18 hours notice for this one.

its a first for a number of reason's - because his mum won't be here (had to fly back to england) but, on the plus side, also for the first time, shannon will be.

no problems going into the hospital which he recognises as 'the hospital where the doctors hurt me' - fair enough. he plays with shannon and doesn't get nervous until he gets called in- i think that because of the changes to his usual routine he didn't realise why we were there.

another first, he goes into the doughnut machine without any needles and is ok with that. the needles come after the first round of treatment - the contrast injection.

to be fair, the nurse was very good and hit his vein first time. Fletch tells me while crying that he wants 'his shannon'.

shannon told me after that she could hear him screaming (i made her wait outside) and was quite upset, just as well she wasn't here all the other times.

results in 14 days.

all good.

Fletchers appointment went well last night, he was full of beans and seemed to enjoy it. Dr Acha checked him over andwas pleased with his progress, no problems at all. we just have wait for a phone call confirming the next MRI now.

another good thing i noticed last night is that Fletcher seems to have lost his fear of hospitals and doctors, which is great. he wasn't worried about going and was quite happy to be checked over by the doctor. this is very good news for me, i often worry about how all of this will affect him and i used to hate it when he was scared of appointments. he was happy and funny and full of confidence. hes such a lovely, happy little boy.