Thomas had his first MRI scan today after his proton therapy finished in July. This is him 3 hours after he woke up with his now common camera smile! We’ve got 6 days now in purgatory awaiting the results….fingers and everything else as crossed as you can.
We have finally managed to get a bit of a break away from it all. We came to Cornwall after Ted took his exam for a bit of a getaway. At the moment the wind is howling and you can see the storms brewing in the Atlantic from the windows. It’s a bit like being in Oklahoma, except about a quarter of the temperature! Thomas had his first dip in the sea now that his line is out, but was put out when the sea stole his sausage roll. He seems to be developing a taste for scones, jam and clotted cream, we have no idea who from….
We are back and as you can see Thomas is familiarising himself with every single toy he has.
Thomas and his toys
We survived the flight home. The American security staff were really helpful, even when Becca left all the lotions and potions in her bag, as were the UK immigration staff at Manchester, who had been pre-warned of our situation by Maureen (our MPs constituency wizard). Thomas did not enjoy the flight, but Evan was in his element as he was cuddled by Granny the entire way!
We got into the house in Liverpool to find that Dan & Sarah had changed the beds and put some provisions in the fridge, which was such a nice to thing to come home to. The last few days have been spent doing the usual things that you need to do when you get home after being away for a long time. Shopping, washing, changing the baby, changing the baby, feeding the baby, changing the baby etc!
Thomas now has to have his line taken out of his chest and then scans every 3 months. We will continue to post how things are going and we hope and pray that we will have good news.
Thomas has finished his proton therapy and “graduated” from the Oklahoma proton centre yesterday in a little ceremony over lunch. Ted had to give Thomas’ acceptance speech as “car” and “lorry” might not have quite got over what we wanted to say! The graduation was a way to acknowledge what each patient has been through in their treatment and for us it was an opportunity for us to say thank you to the staff at the Proton centre for looking after us so amazingly well. American hospitality, particularly in the mid-west, which prides itself on how friendly people here are, was in no short supply and we were able to thank those who epitomised what friendly means. Would “graduation” have worked in the UK? Well maybe, but it would have needed some changes, but only because everyone would have felt so awkward (in true British fashion) talking about what is a pretty emotional thing!
We have a few days here now, to collect our thoughts, work out how many extra bags we need to buy in order to bring the sheer volume of cars that Thomas seems to have acculumated and to see a couple of the sights here. Up until now we haven’t had a chance to see much. So tomorrow, Evan allowing with his somewhat erratic sleeping habits, we are off to the National Cowboy Museum – well what else would you expect in Oklahoma!
Thomas' graduation cetificate and the Procure coin
Thomas and Ted are back in (very) sunny Oklahoma. The machine whirred into action on Monday and has treated Thomas on Tuesday and today (Wednesday). We have only 4 treatments left. Thomas is doing really well, apart from a bit of radiation burning on his ear. We think he enjoyed 10 days with his father. He came home with a new set of words (none of them bad) the most impressive being Daddy. Before Ted was only Dee!
- Thomas gets to grips with Evan
Whilst we have been in Chicago, Lucy, Karen (and the emergency girls) and Felicity have been busy. Thank you so much for all your help.
Our other major news is that Evan’s passport has arrived safely so we can get out of the USA. We are just waiting for news, from the wonderful Maureen, our MPs constituency assistant, about whether he needs a UK visa……
We are still in Chicago. The cyclotron in Oklahoma is still not working despite various whizz kids being flown into try and fix it. We are at the cutting edge of medical technology and know we are lucky to be able to get this treatment to Thomas, but living in a hotel for over a week with a nearly 2 year old is challenging to say the least!
The frustrations not withstanding, the two Oklahoma Procure staff who came with us are doing an amazing job of trying to keep this motley band of brothers functioning. Despite the various eating requirements, medical appointments, arrogant anaesthetists (and subsequently upset British doctors), supermarket trips all mixed up with the anxiety of needing cancer treatment have made their jobs even more difficult than normal, but I haven’t seen two people more dedicated to their patients and charges for a very long time.
Ted and Thomas have been in to Chicago proper twice in the last week (the proton centre is about 50 mins away in one of the western suburbs.) The first time we went in for a river and lake tour with all the Oklahoma procure patients and staff. Chicago is a beautiful city with fascinating and ornate architecture, albeit coupled with a reputation for crime and traffic jams! The second time we went to see a family friend who gave Thomas the run of the garden and Ted the opportunity to read the paper in peace – a well earned change of scenery for us both!
We are making new friends here. Each of the families have a brave and normally sad story to tell, but being together in this contained way has allowed us to share those stories and find amusement in the lighter sides of having proton therapy. We’ve also had to say goodbye to Lily and her parents and aunt, who left us on Sunday to return to Birmingham. Lily was Thomas’s age with a similar diagnosis and we had good fun chatting about American idiosyncracies. We wish them the very best and hope that we stay in touch.
The mums swap over today. Kitten (Becca’s mum) is landing in London as we write this and Sally (Ted’s mum) arrived in Oklahoma tonight. All our family has made changes and sacrifices to their summer plans for us and we are so grateful for their help.
Lily Boo on the Chicago boat ride
Chicago skyline at sunset
Jason (one of the Procure staff) and Thomas on the Chicago boat ride. Note Thomas’ jacket that Daddy remembered to take!
Thomas on 4th July in the lift
No not incarcerated, just watching the Independance Day fireworks in nearby Naperville
A healthy meal at one of Chicago's eateries
Thomas has had two treatments now in Chicago. The guys at Procure in Chicago and the staff who’ve come with us from Oklahoma are doing their level best to look after us whilst we are in a strange town but familiarity and routine have always been good for Thomas so Ted is certainly “bonding” with Thomas at present!
The photo is Thomas at Portillos which is a well known Chicago eatery. It was probably a good thing that Becca was 700 miles away with supper that Thomas ended up having. French fries anyone?!
The Oklahoma cyclotron still isn’t fixed. Apparently, there is a beam, but its not coming out of the cyclotron into the rooms. Its pretty technical and none of us are in a position to offer any tips I don’t think!
We’ve had Becca’s mother and father staying, together with Thomas’ Godmother, Sarah, last week. Kitten is with Becca, but Sarah and Mickey have gone home. It was so lovely to have them and we are sorry to see them go. Mickey took the train from Oklahoma to Fort Worth to get his plane home and this is what he wrote about his train ride…..
“The best bit of the journey was the train, a proper one with a huge diesel engine, luggage room, two guards dressed in smart livery with peaked cylindrical hats and all the bells and whistles particularly the whistle which it blew throughout the journey. It toots a warning every time it crosses a road or track of which there must be several hundred between Oklahoma and Fort Worth. It does sound like the ones on the movies, a slightly discordant chord perhaps tooted on a fifth, I discussed it with a musician on the plane. Strangely not much used by people as it was fairly empty, most people I suppose just fly automatically or drive. You get a very good view from the raised carriage above the room with your luggage which you reach by a small staircase. The seats are wide and generous for leg room, enough to carry holsters on both sides of your belt with pistols loaded and a rest for your boots so no need to take off your spurs. The journey must be 200 miles and you go a stately pace with a bit of clanking with about five stops in small towns, and a slowing down for any of the long freight trains. The side of the track is surprisingly wooded for much of the way, I suppose the land belongs to the rail road company and has returned to its native state rather than pasture. We rattled along beside rivers with red rock beds and where it was wooded I saw deer and even a family of wild boar (hogs?)scuttling away into the undergrowth, and lots of buzzards and kites. The announcements for the next station are not automated, thank goodness ‘Now I do not believe that any of you folks are getting off at Purcell and just should be a few getting on there so we’ll hold on for two minutes there and so don’t you wander far but time for a cigarette.'”