Letters to Thomas

Ever since Thomas first had a fit and was rushed into AlderHey, Becca has been compiling letters to him.  This has been to give something to give to Thomas to read when he is older to help explain what he went through.   These are just a few of them.

Thursday 27th January 2011

Dearest Thomas

I have decided to write you a diary of all the things that have been going on the last week, and into the future, so that when you are older you can read what happened if you want to.  Not that you have to of course, and you may not want too, but I guess in some way it may help me to deal with it all as well.

Last Thursday you had a fit.  We were at home with Sarah and Rose and suddenly your mouth started twitching on the left side and you looked a bit funny.  Of course you were still wandering round pushing your sheep and being Thomas, but then your left arm started twitching and mummy and Sarah started to get really worried.  We called an ambulance and of course by the time they arrived you had come round and were waving at the paramedics.  So that was the start of it all, the scans and the operation and some pretty grim days for mummy and daddy, and all the family.  You are doing brilliantly, and are such a brave soldier, it makes us feel stronger just being with you.

You were not impressed at all with the nurses who have been very kind but have needed to prod and poke you a bit and generally keep you up through the nights just to make sure you were ok.  Infact, you actually went for one at one point, and we were swiftly moved out of HDU!  So being on the ward was quite hard for all of us,although you loved the playroom, it has got a fabulous train set, you didn’t like the food (quite understandably) and it was a relief for all of us to come home on Monday night.

Since it all started we have had so many texts and cards wishing you all the best, and I am hoping to be able to keep them all so that you will know how many people love you and are thinking of you.  You have also been given a book from Amy, a book from Anna and a New York taxi from Sarah , and I am sure there will be more presents to come.

Every day you seem to be getting more like your normal self again, running around and eating well, your rosy cheeks came back today so that cheered me up!

So now we are just waiting to see what the lump was and what we have to do next.

Meanwhile, we are going to have a lovely weekend with Granny and Daddy and make sure that you keep getting better.

Friday 4th Feb

My dearest, darling Thomas

I woke up this morning feeling so so sad.  Sometimes it is just so hard to stay positive.  I keep looking at you and seeing how gorgeous you are and thinking how can I put you through a year of rubbish.  We took you swimming yesterday and you absolutely loved it, you are so full of life and such a wonderful little boy, how can mummy and daddy make you sick for a year?  The problem is, if we don’t, the nasty cancer will most likely come back, and make things so much worse.  I am praying that after this year of chemo it will be the end of all this nastiness. Bang, bang, GONE.

Daddy took you to nursery this morning; I couldn’t as I was too sad, not sad that you were going to nursery, but just generally sad.  I think a morning there will be great for you, a bit of normality, and no teary mummy.  Daddy and I are going to go to the cathedral and say a prayer or two. Love you more than the world.

Monday 14th Feb

It’s Valentine’s Day!  Not that I remembered til this afternoon when we went into town and saw lots of loved up teenagers! Daddy is cooking me steak.  You are tucked up in bed , singing away down the monitor.  You have been gradually getting a bit better and although your appetite is not what it normally is, you have managed three decent meals today and we also haven’t given you any antisickness or any other medication( what a relief!).  Grandma and I decided to give up on bath time as it really was too stressful and you weren’t enjoying it anyway, and so for the last couple of nights we have been doing strip washes which are much better for everyone.  You are still tempted to pull the line out which is quite scary and you look very upset when we say no, but it has to be said as I really don’t want you to have any extra operations! It’s nice that daddy is back this week, makes me a bit more relaxed, and i just hope that you stay well this week and we manage to do some nice things.  I really want to take you to the park, but it hasn’t been nice enough.  I can’t wait for it to get a bit warmer!

Sleep well my lovely boy

Monday 21st Feb

I haven’t written for a while, mainly because things have been pretty good and we have just been enjoying a bit of normality.  You were quite tired on Friday, I wonder if that was when your blood was at it’s lowest, but it was great to see Rose and Lily-Rose. Poppy couldn’t come as she had had some vomiting in the night and Anna and I thought better not too.  Good thing actually, as she has had profuse diarrhoea all weekend!  Sarah cooked a lovely roast chicken for us on Sunday evening, you really liked the sausages…! You seem to be getting a bit more used to your line, daddy and I have been working quite hard at showing it to you, although you really really want to give it a good tug, which is very scary cos I really really don’t want it to fall out.  It’s so hard as you get worried when we take your vest off, but we are really trying to get you to be less worried.  I’m not sure what we are going to do about bath time, I really don’t, but anyway..one day at a time.  We are going to pop you in nursery tomorrow morning all things being well, we popped round to tell the girls and you cried when we left, so surely a good sign that you are pretty keen to be there!

Sunday 27th Feb

We have had quite a hard few days, and I’m afraid that you may go on feeling rubbish for a few more days.  On Wednesday we had to go in to start your next lot of chemo, vincristine and methotrexate.  We arrived on the ward at 10.00 but of course nothing started til bout 12.00.  You were then hooked up to a line for fluids and the line didn’t come down til yesterday evening.  What a bore, to say the least.  Poor, poor you, to be attached to something which means you can’t move about, when all you want to do is be free.  You were pretty cross the first day or so but i think you did get used to it.  We nearly always had to be somewhere near a plug as the battery life of the giving sets seemed to only be about 10 minutes, hopeless!  I felt so rubbish as I know it made you sad and cross. You finished your chemo 24 hours later, on Thursday, but they then have been flushing you with fluid ever since. You have been all puffy.  My strong little soldier.  Your naughty mother has actually abandoned you as well, I flew out to Rauris yesterday for a few days break, back on Wednesday.  Your daddy and your granny Sally are doing the looking after, and I know they will do their best.  I have been thinking about you all the time since being away, on the plane, at the car rental, where I saw a little boy about the same age as you, and wished you could be here with me.  I wanted to show you all the big planes and the trucks and buses at the airport, you would have loved them.

The best news was when Daddy rang me last night to tell me you were going home, what a relief!  Your methotrexate levels had come down to the right level, well done kidneys! I hope you had a good night sleep last night, in your own bed, with Bunny and Boris and all the rest of them to look after you. I hope that you feel like a bit of food today as well as you apparently didn’t want a thing yesterday.

Monday 28th Feb 2011

Its Daddy writing now as Mummy is away. As you can see from what she’s written so far, she deserves the break as she’s been with you non-stop since it all started.  Your mummy is amazing and loves you so much as do I!

Your poor little lips are sore and they’re bleeding a bit from the nasty methotrexate, and you’re all a bit grumpy and ill, both because of your mouth and because you’re not feeling that great. You started to go upstairs to bed on your own, trying to take Daddy with you, and Daddy only realised what was going on halfway up the stairs. So you’re just finishing your morning snooze and then Granny’s going to get you up.  You’re managing a bit of food but it hurts a bit to eat so you’re finding it difficult, but underneath it we know you’re quite hungry so we’re going to leave some food out for you and you can just pick at it as you need to. You’re drinking well, so we’re not too worried as we know that you like your food even if you’re a bit of a monkey. Its hard to know whether you’re being a monkey or not, but I think with bleeding lips, we’ll give you the benefit of the doubt for a few days!

The two Grannies spoke on the phone for a long time yesterday and are going to plan what they’re going to do with you and us over the next few days. We’re all so lucky to have their help. I’m sitting in the office working for my exam, which is next week.

Uncle Dan and Aunty Sarah came round last night and whisked you off to the park for a walk. They are great. I think you had a lovely time, but Dan said that you were tired, which knowing Uncle Dan is no surprise as he probably had you doing chin-ups on the circuit training stuff in the park.

Best do some work to try and pass this exam.

Saturday 19th March

Oh my goodness. I can’t believe I haven’t written for so long, rubbish mummy! Well you had your third chemo on Wednesday, and so far you are doing brilliantly, you are managing three meals a day and having a good old romp with your cousin. Ollie is up which is great fun and you two have been up to mischief for most of the time.  You have been fighting over the vegetable trolley and your yellow truck in the garden.  Ollie is obsessed with a measuring tape called wow and luckily you aren’t! You are both very cute together and I think have actually enjoyed having each other around, even though most of the time you have done your own thang! Ollie has been calling you Obila..bit confusing.  Ohh and your auntie has got engaged!

Sunday 3rd April

Oh my goodness, I can’t believe its April, where has March gone?  I hope this means we will be getting lots of sunny weather so that you can play outside lots.  We have had a few dramas since I last wrote, but I guess that isn’t too surprising.  You had your fourth lot of chemo last wed and we were in until yesterday.  Poor little T,t it really has been a sicky one, and you haven’t wanted to eat much at all.  I can’t tell you how good you are, you are just sick and then recover straight away, you don’t cry at all.  Grandpa kindly drove me up to the lake district yesterday evening so that I could have dinner with the girls for Beccy’s hen do which was lovely, we left to come back about 11pm and about 10 minutes later I got a phone call from the hospital saying that you had a bug in your line and we had to go into hospital straight away.  It gave me such a shock, I couldn’t understand initially why they were ringing, I thought that perhaps we had left something behind, but I thought it so odd that they were ringing me so late.  Anyway, daddy had to take you in while grandpa and I raced back and then I stayed the night with you in hospital, what a drama, you, of course thought this was very exciting, and kept saying ‘dark’, which it was.  We have to have a week of antibiotics, but they have let you out now, we have got to go back at 7pm and then back again every day for them.  And all this cos your line fell apart on Friday as you had been running around so much, they took blood cultures, and found a bug.  Who knows whether it is anything significant  or not, but everything to do with you at the moment seems to be a big deal, even if at the start it seems like something very minor. Oh my little monkey, what a lot of things your Mummy and Daddy have to get used too, wish I could take it more in my stride like you.

Thursday 14th April

Oh Thomas, Thomas, Thomas

What to say apart from rubbish, rubbish, rubbish.  Your scan results were back yesterday and they told us that the cancer has come back.  It seems too hard to believe, just looking at you, and yet in there there is some nasty tumour growing.  So that is the end of chemo, and well in some way I can’t say I am sorry that we have had to stop.  You have been such a star with it all but it has been making you so sick.  So mummy and daddy had a chat with the doctors and there are other options.  After much discussion and thought they have come up with a plan, which your daddy and I are going to go for, although it is a somewhat scary process and also delving into the unknown.  They want to do another brain operation on Monday to remove the rest of the tumour ( and some normal brain –yikes) and then plan to send you off to the states for some treatment called proton therapy.  This is not available in the UK (yet) so that is why we have got to go either to Florida or Oklahoma for it.   The consultant, Dr Thorpe,seems to be very positive about your chances with it and she rang us at half eight last night to discuss it.  Although the actual proton therapy should not give you any short term major side effects, hopefully much less than the chemo, the long term consequences to your development and cognition are not known, so we are stepping into the unknown.  The theory is that it is much safer than standard radiotherapy for a munchkin of your size, less scatter and radiation to normal parts of the brain.  It is all rather amazing, and positive, in that the NHS feels that spending this amount of money on you is worth it as they are not renowned for splashing the cash around.  Daddy and I are going to go for it, and so are you, of course, you are worth everything.  Of course, little jemina is putting a spanner in the works already, as only siblings can, and so I don’t know if Mamma will be able to come as she will be too fat and pregnant, and we are not sure that they would be happy to pay for a delivery out there.  Daddy is on the case though, so we will see…

And so, hopefully a nice weekend with grandma and then another operation on Monday.  I am keeping everything crossed for you, and I know so is everyone else.

Saturday 23rd April

Dearest Thomas

We are back home after 3 nights in hospital.  You have done so well, I think you are amazing.  The operation on Monday was a long one, another day of Daddy and I waiting around but somehow this time I was more worried, i think because it seemed even more major than last time, as they were having to take normal brain tissue out and potentially leaving you with lasting damage.  At about seven o’clock we went to see you in recovery and it was so lovely to be able to give you a kiss and a cuddle.  You again improved day by day, although perhaps not as fast as last time and unsurprisingly were pretty grumpy for a few days.  I think Ms Burns was very pleased with how you were doing and so Granny and I happily took you home on Thursday morning as soon as they let us.  You were absolutely shattered all day Thursday but recovered your perkiness yesterday and were terribly excited to see Dan and Sarah in the afternoon.  Mamma has been trying to keep your days quiet, but it is rather tricky with your godfather!  Today has been up and down and I think you are definitely still needing the pain killers, bless you.

We managed to set up a website, which tells everyone how you are getting on, the day before the operation, and I am so glad we have done it.  Mark has given us a hand with it all and it looks fantastic, lots of lovely photos of you and so many messages of support, it really is a big comfort to mummy and daddy.

You have got through all the trials and tests so far with incredible strength and resilience, keep up the good work monkey and let’s get to the states and back and get rid of this nasty cancer.  I know you can do it; we are all here for you.

Tuesday 26th April

Dearest Thomas

We met with the oncologists today to talk about your treatment in the States.  The consultant, Dr Thorpe, explained everything very clearly (over an hour and a half..) and you managed to be very well behaved through it all, keeping yourself entertained with a bit of drawing and a bit of puzzle. The light isn’t quite on green but it is hovering there and Dr Thorpe is pretty confident that you will go.  Whether fatty mummy will have ‘jemina’ out there is a different matter, but I keep thinking to myself that you will be fine without me, even if I can only come out for a few weeks, as long as you get the treatment, that is the main thing.  Daddy and I are now trying to weigh up all the different options, but it is so hard when there are so many variables.  You are doing great, and I have hardly given you any painkillers today.  Those that I have been giving, I think are helping more with your teeth (which all seem to be coming through at the moment, typical) than your head.  You are anaemic, so we are trying to give you lots of red meat, spinach etc…NOT that you want any of that rubbish..! I am going to investigate some iron fortified milk.

Monday 2nd May

My dearest Thomas

I think your Daddy and I are probably the only two people in this country who are looking forward to the end of the bank holiday.  Bring on tomorrow, so that people can sort out getting you to the States as soon as possible.   Having said that, we have had a lovely time spending it with you, the weather has been gorgeous and the bbq’s endless.  You seem to be on good form, especially when Dan and Sarah popped round this afternoon, its Dan this, Dan that… I definitely think he’s your best friend..And I think the feeling is mutual!

Line flush tomorrow, hopefully you will be much calmer with it all this time, as you have been such a good boy recently with things like that and taking medicine.  Mamma has got to go to the Women’s to make sure the baby is growing ok, not expecting anything bad, but if I do have ‘Jemima’ out in the States,  they do like their scans so this is hopefully to keep them happy.

Sleep well my gorgeous boy

Sunday 15th May

Dear little T

Well, we are still here in Garston, unfortunately nowhere near the airport or even able to book our flights.  Daddy and I have had an incredibly hard week, and surprisingly hard as well, considering everything we have been through, but it really has been so tough waiting for these people to make a decision about going.  I know they have said that we will be going, and that you will be funded, but the worst thing is that they just seem to be taking such a long time to put that decision into place, and I can’t do anything to rush them.  I am so desperate to get you out there, so desperate to make sure that the cancer doesn’t come back before we get there, so desperate to save your life, and yet we are being held up by admin.  It seems so wrong that a decision like this, which apparently does have ‘urgent’ written on it, is taking them weeks to make, surely ‘urgent’ decisions should be made in days not weeks?  I can’t even sleep, I am so angry with these people, yet I know that there is no point in harassing them, as it will only make things worse.  I feel like shouting at them : ‘don’t you know this is my son’s life you are prevaricating about?! This is not some routine thing, this is a HORRIBLE AGGRESSIVE CANCER THAT CAN COME BACK ANY MINUTE.AGGHHH’  And yet they must know this, they must because that is their job and we just have to sit on our hands and breathe and wait.

On the other side of this we have our friends, who organized this fantastic fundraising/farewell party for you and it was amazing.  My little one, so many people came and raised money so that Mamma can be with you during your treatment and have the baby out there, it is just wonderful how much you are loved.  Whatever happens we must always remember how many people were there, and how much people have wanted to help us through this, because at the end of the day, that is what matters.

Wednesday 18th May
Little one
We are going, hooray , we are flying out to the States on Saturday. We finally had the go ahead today from the proton panel, what a relief. Daddy and I had actually decided to just go and had already booked our flights, but thank goodness they have said yes. It means that hopefully come Monday we can crack on with things, and get the ball rolling. I can’t believe we are going to start another lot of treatment, it seems a different world that we were doing chemo, I just keep thinking that hopefully this won’t be as tough on you and also that it is only for six weeks, so we will be ok. You have been so well these last few weeks, coming on with your words..saying ‘ma’ for grandma, and ‘night night di’, eating well, and generally making the most of life. What a wonderful little boy you are. I have got to make sure we take as many of your favourite things as possible, although I don’t think we will have room for the vegetable trolley.
Busy few days ahead, big big kisses
Mamma x

Thursday 26th May
Dear T
We have had rather exciting few days, what with sheltering from tornadoes and you having your scan. Not to mention Mamma meeting her obstetrician ( cos we had completely forgotten about poor ‘Jemima’ in all this and it gave us a bit of a shock to think that she is arriving in a few weeks.) The bestest news ever is that the CT scan hasn’t picked up any return of the cancer, so we can hopefully start treatment next week,knowing that we got you out here in time to give it all our best shot. All at the proton centre have been so so kind, and they seem to have taken a shine to you. They call you ‘Mr Thomas’ and spoil you rotten! They seem to be going as quick as they can to sort out the treatment plan for you so that we can get going next week. Daddy and I can’t believe we have hit another bank holiday, (I didn’t think American’s took any holidays…..) but hopefully it won’t delay us too much. Our days seem to be filled with appointments and Walmart, I haven’t even braved the driving yet,apart from in a car park, but I really do need too. You have been charming all the hotel staff and guests, I think they must miss the grumpy bits, and you are loving running up and down all the corridors. Hoping to move into a house next week as well, which will give us room for ‘jemima’ and all the grannies, but you will definitely miss the corridors and the lifts; I think you’ve taken a liking to hotel living.
We might go away over this long weekend, as you are well, and mamma is only going to get bigger and bigger, just got to avoid further tornadoes.
Mamma xx

Sunday 5th June
Dearest T
We have been here now for two weeks, feels like a lot longer than that! You are doing absolutely great, and have had four treatments. 29 to go! It is a great relief to get going, although of course daddy and I always worry about something, and so now we are worrying about you missing meals what with having the anaesthetic, and not being able to eat anything from the night before until late morning. Sometimes it is not too bad, but the other day we were delayed and it wasn’t til two that I could give you some milk. Of course you are coping with this fine mostly, and I think mamma just likes to worry. The amazing heat doesn’t help, 100 farenheit in the afternoons. You and daddy are coping with the heat much better than I am. My hot water bottle that I carry around with me doesn’t help much and I think it just takes longer for my body to adjust to the changes in temp.
We have moved into our house and it is great to have a bit more space. We can do a bit of cooking and you can run around much more. We have got a backyard, but it is so hot that we haven’t spent much time out there. We do have a resident rabbit that likes to come and sit in it in the shade. We have also encountered a runaway dog, and have been told to watch out for certain types of spiders..scary poisonous ones..yikes.
Aunty rachie is coming to stay next week, will be lovely, especially useful if ‘Jemima’ decides to make an appearance, hoping not…..

Sunday 12th June
Another week done, 5 more treatments done! We have had a lovely weekend, and it has been great not having to starve you and not have to go to the proton centre. Went to the zoo yesterday, mamma was very impressed that she lasted four hours in the heat, and that she saw some giraffes. I am hoping all that walking around might have helped ‘jemima’ get into the mood for coming out, although she seems pretty comfortable at the moment. You really loved the small train ride we did, much more impressed with that than the animals.
Mamma getting bigger and bigger. We managed to go and have a quick look at the labour ward last week, which is in this huge hospital about 10-15 mins drive, on the 4th floor. They have ‘valet’ parking, so Daddy is pleased as we can always leave the car and run in! the ward looks pretty similar to the one back in Liverpool, if not more comfortable, which is reassuring. The a/c was running and the rooms that bit larger, so Mamma was happy. They also have a ‘bevarage’ room where you can pick up an iced tea….fabulous. The OBGYN seems lovely, if not a little shocked by Mamma’s admission of drinking some alcohol during the pregnancy…oops, not the done thing over here. She seems very relaxed despite all our questioning, she apparently tries to come to all the deliveries…worried Daddy a bit as we don’t really want an exhausted doctor on our hands, but I think that is how it is done here. You never know, ‘Jemima’ might arrive at home..put Daddy to some use.
Aunty Rachie getting married on Friday, wow. Can’t believe we are going to miss it, despite being in the same country. I know she wants you to be there especially, so is planning to have great big wedding next summer, when hopefully all will be well. You loved seeing her last week, she is a great aunty, good at getting up to mischief and distracting you from lack of food/water in the mornings.
Back to the proton centre tomorrow morning little one, keep up being such a brave boy, Mamma and Daddy are very proud of you.

Sunday 19th June

Dearest Thomas

We are definitely starting to get into a routine, and so far you seem to be coping well with all the treatment.  I wonder if all the anaesthetic has a cumulative effect on you, you definitely seem to be pretty tired by the time Friday arrives, and the breaks at the weekend are very much a good thing.  I guess only time will tell, 14 done, 19 to go!

Daddy and I are getting used to the morning routine, sneaking a quick bowl of cereal in before we get you up, then trying to distract you as much as we can, before getting into the car and driving to the proton centre, where depending on the day you are either in pretty quickly, or if things are running late, we have more distraction to be done and an ever more grumpy toddler.  You have cottoned on pretty quickly and now ask for the nurse, Pam, as soon as we arrive.  I am not sure if this is because she has a fabulous toy car that you want to play with, or that you know that once you have seen her (and been to sleep) it means that you can then have your milk etc.  Whatever it is you seem to want to get on with it as much as Daddy and I.  You are spoilt by everyone there and allowed to have free reign of the corridors on the toy car while you wait to go in.  You now barely give us a backward glance before going into the treatment room.  Good for you!

‘Jemima’ is behaving far too well, and shows no sign of wanting to go anywhere.  I think she is going to be another late monkey like you.  As grandma is arriving tomorrow I do now give her permission to come out!

Saturday 2nd July

Dearest t
Things have been pretty busy here, mainly as your brother has arrived, lovely little Evan, no sign of a Jemima at all! You and daddy are also in Chicago at the moment, just to add to our complicated lives, as the machine here in Oklahoma city has broken down, and so they have had to fly you over there for treatment. It has been three days and I misss you terribly, and daddy. I feel terrible that I can't be there when you wake up from the anaesthetic to give you a cuddle. Sounds like things aren't so well catered for children out there, for example not letting you have a sleep when you come round from the anaesthetic, meaning that you are in quite a state, poor daddy, and poor poor you.addy is also struggling to get decent meals down you as things are a bit chaotic, I just hope and pray they get the machine here up and running soon. Things here are fine, very quiet without you, although Evan is getting louder and louder! Mamma is ok, just tired and wishing she could look after you as well as Evan.
All my love to my big boy
Mamma xx

Sunday 3rd July

My little one
(my big little one I should say now), with you being in Chicago I seem to have a bit more time to write your letters.  Your brother is asleep for a change as well so mamma has got a bit of free time.  I am missing you so much, I can't believe you are still in Chicago. Daddy is doing a fine job of looking after you, you apparently went on a boat trip last night on lake michagan, and loved it.  You didn't get to bed til 10.30...luckly mamma wasn't there or she would have been worried about the lateness.
You have now had 23 treatments... Slowly slowly we are getting there. Grandma and I are having a very quiet time, although your brother is getting noisier
 and noisier, I hope you won't mind him when you get back, as you haven't really had the chance to get to know him yet. Knowing you, it will all be taken in your stride, like you do with everything else.  I think though that you will be great friends, once Evan masters the duplo!
Well, sweet dreams my gorgeous one, day off tomorrow.. independence day.
Mamma xx

Wednesday 6th July

Darling Thomas
Another week of proton therapy has started and you and daddy are still in Chicago. Looks like you will definitely be there all this week. They have apparently found what is wrong and have ordered a new part, just waiting for it to arrive now. Daddy tells me that you are doing great, saying new words daily now, apparently you said "yellow-car-gone" yesterday, brilliant! The times that you have your treatment seem to be all over the place, sometimes not til 4' but I think Pam has managed to get you to have a sleep when you come round, so things are a bit better.
Grandma left this morning sadly, has been great having her here, especially with you and daddy being away.  We have managed to do some nice things together, in-between feeding your brother.... I am sorry you  missed the 4th July parade, I know you would have enjoyed seeing all the trucks and horses, more so than Evan did! It was so hot though, we didn't last outside very long. Ma is now on the same train that grandpa got to Dallas, just made it I believe.
Granny arrives tonight...they always pass in the night these grannies....and i think she will be very pleased to meet Evan, and see you when you eventually return.
Big kisses xx

Monday 18th July

What a strange feeling T, one more treatment to go.  It has been quite a couple of months.  I would never have imagined in a million years that your little brother was going to be an american, let alone an Okie. I guess we would never had imagined that we would be going through any of this  6 months ago. What a trooper you are, 32 days of radiation and
anasthetic and still smiling.  Getting tired though, and your scalp is certainly suffering from it.  I am glad it is finishing if only to give it time to heal. I think you are going to miss everyone at the centre, especially Pam.  What are we going to do without the
lovely Pam?!  You get quite upset if we go to the centre and you don’t see her.. a creature of habit.  Mamma is so pleased that you will get a break, although also now starting to think about what next, which is pretty hard, as it seems that at the moment I am thinking of all the worst case scenarios.  I think it the big unknown now, and we just wait and see.  Unfortunately, even though this treatment has finished, the worry goes on. We have to just keep going though, and I think it will prob all feel like a dream when we get back…but we do have Evan to prove it was real.


Tuesday 2nd august

How lovely to be home! We flew back on the 25th July and it was a relief to step out of the airport and into the morning British sunshine.  We had quite a flight, American
airlines weren’t exactly helpful, and you had a bad time, it was just too cramped for you to sleep, poor little thing, so all in all you had about two hours sleep (if we are being generous) and were completely overwrought.  At least your brother was very well behaved,
and Granny cuddled him most of the way home.   Home now for a week and you are just about over the jet lag.  It has been hard for all of us getting our sleep (well, except Evan) but we have managed to catch up with a few people.  We have met Hudson, had a play
with Poppy and a cuddle with Chloe.  We have also already been to the park several times and you have slid down the slide without the fear of getting burnt, hooray! You have also followed the bin lorry halfway down the street cos you were so excited to see it, crazy boy!We had to go back to AlderHey today as you had your line taken out, fantastic in so many ways, but a bit final.  Daddy and I are finding it all quite hard at the moment, but I can’t tell you how wonderful it is to see you take it all in your stride.  You didn’t worry at all
today being surrounded by all these strange people in the anaesthetic room, and
20 mins after the procedure you were running around with Dan…what a boy.

Big kisses xx

Tuesday 30th August

What a long time it has been since I have written to you. So much going on you see, and Mamma is very naughty at not writing it all down, so much to tell you.  We
have been back for over a month now, and things are definitely getting back to
normal.  Daddy and I have put you back in nursery a couple of mornings a week and I think you are enjoying it, gives Mamma a bit of a break.  You seem to be doing great, although you are tired, and I think you will feel like this for a while to come.  I so want your life to be back to normal, that we probably do a bit too much sometimes, and that can be exhausting for you. But it has been so great to see all our friends, and you have already been swimming, which you loved. It was wonderful to see your happy, happy face, grinning away in the pool.  Most importantly you are now the grand old age of two, which is of course a very important birthday.  We had a great time down in London, and a lovely birthday party at your cousin Ollie’s with a few friends.  You loved sitting round the
little table, having sausages and crisps and I think you definitely got the idea of birthday candles, although I have to say your cousin Ollie was a little more practiced at the blowing bit.  Evan is becoming more and more part of your life, and he already adores you,
following you around the room with his eyes. You have now started to say “E an, E an” if we are leaving to get in the car, Mamma is not allowed to forget him.  It
is hard sometimes not to think of your next scan, and what might be, and I know that Daddy finds it hard too.  Somehow the nicer the day, the harder it is.  But life goes on, you and Evan grow, and Daddy and I love every minute.

Love you with all my heart,Mamma

Monday 19th September

And so another month flies by.

We have been down to Granny and Grandpa’s house in Cornwall, which was really nice, and you loved seeing Uncle Tim and Uncle Joe who came down for the weekend.  We stopped off at Granny and Grandpa’s in Wales for a couple of nights on the way back.  It was a very strange feeling, as last time we had been to the farm was Christmas, before all this started, and I guess that the tumour was there, not that any of us realized.  This time round you really seemed to enjoy all the animals.  You even did a bit of sheparding with Granny, ‘come by’, ‘away’, very impressive! You also had a ride on the tractor with Grandpa and weren’t scared at all.  We have started swimming with waterbabies again and both you and Evan are having a go, different classes of course! Mamma has to be in the water for an hour, I think it is going to be good exercise for her.  Mamma
is doing fine, although does find it difficult meeting new people with young children.  I am ok with my friends, but find it hard when there are people I don’t know.  Not that anyone is unkind or anything like that, it’s just that you feel that there is no way that you could ever relate to them because what we are going through is so far removed from anyone else’s lives, so it is hard to form a connection.  It can be quite isolating.  And there
you are with your half head of hair and huge scar, trying to join in with the older kids.   I don’t want any of them to be nasty too you or point at you, not that anyone has been, but the temptation to be overprotective is there.   It is just something that we are going to have to deal with.  Birthday parties, nursery and playgroup..all the normal things in life, all good.  You are well, being the usual demanding monkey toddler, and that is all that matters.



31 Responses to Letters to Thomas

  1. carole says:

    my Ted has not seen this yet…he willl no doubt know all about Proton Therapy….my heart and thoughts are with you all the time…good luck…love you all Carole

  2. Jody ward (was brown ) says:

    Dear Becca and Ted

    You may not remember me ( I was in Teds year and briefly worked with Becca ) but I am friends with Sarah and she had told us about the ordeal you are going through.

    I can only but imagine what you are going through and feel privileged to read your diary . My heart goes out to you and we will try to help in any way possible .

    I hope today has gone well and much love to you all

    Jody Damian Emily and Thomas xxxx

  3. Sarah James says:

    How beautiful and extremely moving.

    Our thoughts, prayers, hopes and dreams are with you today and always.

    Much love Sarah, Mark & Rose.xxxxx

  4. Catherine Rawlinson says:

    Your letters are so moving and you are all so brave.
    Our thoughts and prayers are with you
    Catherine and Ivor

  5. Fiona says:

    So brave of you to share this very personal journey the three of you are on; I hope it helps and I wish you all lots of love & luck (Becca, I worked with Ted & keep up to date via Kate). xxx

  6. Helen Purves(nee Moore) says:

    Si and I want to send you all our thoughts and prayers. I can’t imagine what you are going through. You guys are amazingly strong to share your personal journey.

  7. edward chaney says:

    dearest becca… you write beautifully. xxx

  8. Heather Roberts says:

    It is difficult to omment in the face of such courage and love. The Roberts in Florence, and elswhere, are thinking of you and send love. Happy Easter to you all
    Mark and Heather

  9. Lucy Glen says:

    Dearest Becca, Ted and of course Thomas,

    Although we have not known you guys very long it goes without saying that we were shocked and saddened by the news that Thomas was poorly. It’s unimaginable what you are all going through.

    This website is amazing, the photo’s gorgeous – and i will be regularly checking for my little Thomas updates!

    All our love and thoughts are with you, and really look forward to seeing you soon!

    Lucy, Trav and Summer x x x

  10. Sophia Nelson says:

    You letters have moved me to tears xx you are both so brave – Thomas is too of course. Lots of love xx Soph

  11. ann heywood says:

    You dont know me at all but I am Leonie Summers’ mother and Kitten has just told me about brave Thomas and the courage you as parents are showing – remain strong and positive and all these thoughts will be transmitted to Thomas – it is difficult to say much, but as a mother, my heart goes out to you all – roll on America and I am sure all your family and friends will transmit positive feelings and am sure will pray that Proton works for this beautiful little boy – stay strong and you will be given the courage to cope with what lies ahead –

    Ann Heywood

  12. Caroline Wootton says:

    My dear Becca, YOU ARE an amazing caring mother and wife in all you are doing to get Thomas through this season. You write beautifully honest letters for Thomas.
    Little did I realise what your life was holding for you when I saw you at Kerstin, Rauris in February…..
    You will all be in my thoughts & prayers as Thomas faces proton therapy in the U.S.

    “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8 38-39

    Ask Him & Father God will be with you each step of the way.
    Easter Blessings, Caro.

  13. Anna Pio and all the Pio Family says:

    Dear Thomas,
    although we haven’t met you yet, we knew your Mummy and your aunties Sarah and Rachel when they were 3 little darlings like you ! You and your mummy and daddy are in our thoughts and hearts and we are so grateful to be able to follow your progress day by day. A big hug and kiss to a very brave little boy and to his dear mummy. Anna, Julian and Dorothea, Miranda and Carolina Pio

  14. Tia says:

    My thoughts go out to you and your family,
    keep strong, love

  15. Flora says:

    Dear Thomas,
    how wonderful to see your happy smiles so soon after such a big operation! What a brave boy you are! It is really moving and humbling to see proof of the indomitable human spirit in such a little one as you are.
    I am keeping my fingers crossed for the trip to the States, and I hope you enjoy the plane trip as my children did and do at your age
    I send you all lots of love

  16. carolyn warren says:

    I have just read your diary and think you are totally amazing. I am just so sad and sorry that you are having to deal with this. I have been thinking of you all such a lot since Anna told me your news.I Will be thinking of you when you go to the States and pray that they will make Thomas better. Lots of love and Take Care Carolynx

  17. Ann Pearson says:

    I can’t begin to imagine what your family are going through, stay strong, you’re all in our thoughts & prayers.
    Best wishes Ann, Spencer & Lily

  18. Helen Forbes-Watt says:

    We were so shocked and saddened to hear about Thomas’ ordeal but very touched by your courage and truly indomitable spirit. We send you all our love, thoughts and prayers from Rome for a positive outcome of the proton therapy in the States.
    Helen (Kitten’s step-sister) and David

  19. Huda says:

    It feels surreal to see all these happening to you, and you are one of the nicest people I know. I am not great with words, but my prayer goes to Thomas, you and the rest of your family. I am sure something good will come out of this trying time.

  20. linda wain says:

    Dear Thomas,
    We have not met you or your mummy and daddy but we as a family would like to say what a beautiful brave boy you are.
    You are all in our thoughts and prayers
    love Linda, Gary and Florence

  21. Lucy, Chris and Daisy Clement says:

    Dear Ted, Becca and Thomas (and ‘Jemina’),
    We have just heard about the update on Thomas and the plan for the proton radiation therapy via Sophie…and have read through your website this evening. Your words are so moving and it’s privilage to read your journey. You are all so brave. We are thinking of you…… Lots of love from Lucy, Chris and Daisy. xxx

  22. Linsey garnett says:

    Becca and ted this is so so moving, I cannot put into words how emotional i was reading this. U are both so strong for Thomas. Keep this positive thinking up! Love and prayers Linsey, John & mikey xxx

  23. Lucy Brown says:

    Dearest Becca, Ted and Thomas
    Great new pictures and such moving letters. Just so you know we are all with you and willing some progress with all this red tape and bureaucracy. Love to you all
    Lucy, Nick, Paddy and George x

  24. shelagh and Sam says:

    Bon Voyage.
    Dear Little Family,
    So glad you are on your way. Nick and Sarah have kept me informed, but this site has been such a good idea. So many people I know have been contributing
    so this story has touched many many hearts.
    Well done so far, our thoughts and prayers are with you.X

  25. Caroline Emo says:

    Dear brave trio,
    I pray that your love and courage and determination will bring the reward you so deserve. I shall keep you in my thoughts every day.
    With love, Caroline Emo (Italy)

  26. maggie eaves says:

    Good luck with all that u have to go through, will keep praying for you all and for mums safe delivery, belated birthday wishes Ted. Maggie Eaves. x

  27. Robyn Powell says:

    Dear Ted, Becca and Thomas,

    I remember Ted well from medical school and Obs &Gynae placement at Arrowe Park when I was in fourth year. I now have my own child – an 18 month old daughter. I am so sorry that this has all happened to you. Ted was always so nice and kind, and I’m sure the rest of his family must be too. I wish you lots of strength through this treatment and I hope against hope that it goes well for beautiful little Thomas. I also wish you lots of joy with the birth of your new darling little baby, and hope your family has lots of good times together.


    Robyn Powell (nee Duggan), Steve and Holly xxx

  28. Andrea Pilkington says:

    Great that you guys are almost half way through! Andrea xx

  29. Sara says:

    So great that you are nearly halfway through. Many, many congratulations on the safe arrival of Evan ‘Jemima’ Adams – what fantastic news! Thinking of you all in our thoughts and prayers.
    With love, Sara, Corey, Flo & Sam x

  30. graham says:

    Dear Becca and Ted

    Just to let you know, Miss Lilly Boo is Missing seeing Mr Thomas today, as we having landed back in the future, Hope little Mr Evan is doing well and that Ted is getting the rest he obviously needs, I hope Becca, you are coping well with the challenges you are facings, all the best

    Graham and Cherie and Miss Lilly Boo xx

  31. Damien Cullington says:

    Dear Ted and Becca,

    Natalie and I were lost for words when we found out about Thomas. Our thoughts are with you and hope Thomas makes a speedy recovery from his therapy.

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