Day +365

It is now 365 days since William received his stem cells and his new immune system. He continues to amaze and delight us. We have all come so far in the last year and it means so much to have had you share our WAS journey.

This will be our last entry on this blog. I pray we will never have cause to start another but we have found it quite therapeutic chatting to our computers and sharing our experiences with you all.

If you ever wonder how we are and think of looking at the blog, give us a call or send an e mail instead.

If you have stumbled across our blog and find yourself in need of someone to chat to about bone marrow transplant or Wiskott-Aldrich Syndrome then do send us an e mail.

with love
Catherine, Robert and William xx

We walked (and cycled) to the beach....

Wow! Together we have raised over £10,000. Jeans for Genes and The Sick Children's Trust both want to pass on their thanks to you all for your efforts and to your generous supporters. You are an amazing bunch!
Lots of pics at www.justawalktothebeach.org

News

As they say, no news is good news and William has continued to do remarkably well. We are not back up to GOS until February and the one year BMT anniversary is looming but before that it's Just a walk to the beach.
Just in case, dear readers you don't know to what I refer, this is our fundraising event for Jeans for Genes and The Sick Children's Trust. Many of our amazing families and friends (or as I think of them extended family) are travelling over 2,200 miles and getting sponsored to walk and pedal their way, carrying a surfcraft to Saunton Sands in North Devon for the big finish on Sunday 14th September. How mad are they? We are thrilled by their involvement and bowled over by their support. So thank you all, for everything and good luck and safe travels to you all. For more details see www.justawalktothebeach.org
We will post piccies here and on the Just a walk website so keep your eyes peeled.....

Update

Happy 65th Birthday Dad and Happy Birthday Nick!
We are all doing great! William is well. Recently he had a high temperature which resolved without antibiotics, that immune system is really doing it's stuff. We also thought that he might have been getting chicken pox after a close encounter but we gave him a precautionary extra dose of immunoglobulins and he didn't, phew! Mum has had her last dose of chemo (fingers crossed) and is recovering from that, she has been amazing through it all. We are just trying to do 'normal' things and make the most of everything. We went camping the other weekend in, yes you've guessed it north Devon and even managed to fit in another 'Just a walk' press interview!
Thanks for checking in on us.
Love to you all.

3rd June

This brave and inspiring man has only just come to my attention, where have I been? This is a very honest and massively moving account by Adrian Sudbury about his battle with leukemias and through bone marrow transplant. He is using the time that he has left to raise awareness about bone marrow transplant http://baldyblog.freshblogs.co.uk/

Just a launch on the beach

We had a fantastic day on the beach at the launch party. To see some pictures go here....www.justawalktothebeach.org/pages/morepages/gallery.htm

We had a digital camera treasure hunt, won by Andy and co (some very impressive sprinting to the carpark to get the camper van shot clinched the deal). Special mentions must also go to Ben and Sophia for moving the least and getting all the shots, zooming in on a camper van on the road was certainly a clever move, Nick and Bryony also showed exceptional dedication when they went to the beach shop and asked if they had a turtle that they could photograph (and after some rummaging in the store room found that they did!)

The sandcastle competition was certainly sandy. An impressive number of castles were built, beautiful flags displayed and a mermaid crafted. However the winners were Nick and Bryony with their inspired coffee and cake castle.
Thanks to Grandma Sue and Granma Ruth for their exemplary judging.

The leaky bucket relay was hilarious. The sea was so far away that we dug a well to race to but water supplies were limited so buckets of sand made their was back rather than water. After some questionable but highly effective tactics by Nicki the girls team were victorious.

Nicki made our delicious 'just a walk cake' with caster sugar sand, soon mixed with real sand but was much enjoyed by everyone.

Can we have a big cheer... 'HOORAH' for Tasha and Jim who cycled for 8 hours and covered about 50 miles over Exmoor to be with us on their Tandem. Sadly they didn't make it in time to get to the beach party but their achievement was amazing. To their enormous credit they also cycled back (another 5+ hours) to the station battling gale force winds, rain and thundering traffic on the Monday as many campers fled a stormy Devon.

We had a great weekend, barbeques, a pub lunch, noisy student neighbours, lots of flapping canvas, soggy stuff, catching some waves and a lot of splashing about, fabulous cooked breakfasts (cheers Ben!), walks on the beach and a few beers and most importantly amazing company. Thank you all for coming and supporting us and being the fabulous people that you all are!

Monday 12th May

It’s been a while, but as they say no news is good news. William is progressing really well. We went up to GOS last week and can now visit Granma and Poppa (and their exotic birds) and go to shops and toddler groups! We have stopped all his meds (not counting the penicillin which he gets forever!) now (probably including the sub cut immunos just waiting on the latest results) so now his new immune system really gets put to the test so fingers crossed. Back to GOS in 3 months all being well. We have updated our car and now have a big blue surf bus ((as Rob likes to call it) in reality it’s an 7 seater Fiat) lots of space for camping equipment and dog! We have been enjoying the sunshine and being a family and working hard on Just a walk to the Beach. We’re getting excited about the Big Launch Picnic, the weekend after next and have an impressive hand crafted 3 metre high flag! Will post again after the launch picnic……

Training for Just a walk to the beach...

I've started my training for Just a walk to the beach, have you?

www.justawalktothebeach.org

Friday 11th April

We went up to GOS on Wednesday, which went well. William’s immune recovery continues..hoorah! Another tiring day but cheered to see Kellar much improved. We have restarted started sub cut Immunoglobulins at home until he makes enough of his own. We will be back up to GOS in a month. We are starting to see a few more (well) children in small numbers. William spent a lovely afternoon last week in a den with Eleanor and last weekend had a fabulous time with Sophia and Luca in the park.

We've come a long way, baby.

We’ve come a long way in the last 6 months. We are so grateful to everyone who has supported us during this time. Because of the generosity of a stranger William has a brighter future and we have so much more to look forward to.

HAPPY EASTER EVERYONE!

We wanted to wish everyone a very happy easter. We are enjoying an overnight stay at Grandma and Grandpa's with Uncle Nick too. We all had a lovely turkey lunch and william did some paddling in his wellies in a hailstorm. Lots of chocolate still to be eaten so I had better get back to it!

Good Friday

More antibiotics today through his canula. Great service at Bath today, no traffic, an Easter egg for William and very prompt administration of the antibiotics. We had Andy, Nicky, Hannah, Ella, Great Grandad, Granma and Poppa for lunch toady which was lovely. Grandma and Poppa brought a fantastic colour coded Easter egg hunt. We had great fun finding them and now have bags stuffed with chocolate and coins! (William managed very well one handed due to the splint and bandage on one hand, he is very adaptable) We had a nice call from Alex our Lifetime nurse to check that William was alright after yesterday which was really thoughtful. Yesterday went pretty well despite the long wait. We were on the oncology (cancer) ward in a room with 4 other children (it's alright because they were all infection free and some of them had less of an immune system than William) which was weird as we are used to being isolated. They had fabulous facilities there, a great playroom and even internet access for parents. The nursing staff were also really friendly and just before we left William got an Easter egg from the Radio Lollipop, I wonder if his GOS egg is in the post?!

Line Out!

Arrived Bristol 8am, Line Removed 4.34pm, Discharged 9pm, Arrived home 9.47pm. W well and full of chocolate! Too tired to type more.

No News Today

Hi just keeping you up to date, as Cath said I would. Well William still has a Hickman line Bristol could not find surgery space for him today. So Cath and William went to the RUH for immunoglobulins and antibiotics and got home at five past seven. We have to ring Bristol at six tomorrow morning to see if there is a bed free (which there wasn't at 5pm this evening!) and William will go on the emergency list again. Not sure how he is going to cope with no Jaffa cakes and Weatabix for six hours or how we are going to cope with William not having Jaffa cakes or Weatabix for six hours. A small price to be line free I’m sure, and how hard can it be reasoning with a two year old? The School visit went well; the picture is of a bird feeder made from recycled materials. When you make yours just remember to tie the string tight otherwise all the seed falls out.

Tuesday 18th

Got more IV antibiotics today which was fine. Got a phone call from Bristol at 5.30pm tonight to say that they want to take his line out tomorrow (ok, we don’t need any notice~~! Rob is hosting a school visit in the morning which he has been preparing for for weeks (I know cos I have had to eat a lot of yoghurt cos he wants the pots to make bird feeders) They will ring us in the morning to confirm when they want us!! He will go in for his Immunoglobulins to make use of the hickman line for the last time (next time he needs them, we will do sub cutaneous like we used to) He is on the emergency list so will be fitted in as and when, probably late evening so we will stay in or early morning on Thursday and then we will come home. I am sure that Rob will keep you posted. Bit nervous, truth be told but we will be in safe hands and it will be amazing to have a line free William.

Monday 17th (ooh just realised it's six months today since we were admitted to GOS)

Went to Bath today and got our IV meds no problems. ‘They’ have decided that they want to take the Hickman line out. It was due out soon anyway but it’s easier to remove than disinfect it. We were offered to have it done in Bath but we would much prefer a specialist Children’s Hospital so either Bristol or GOS if you please! (also they have about 6 wards closed with the dreaded Noro virus in Bath at the moment)! So we are hoping that they will sort something out soon between them. In the meanwhile we will continue with the IV antibiotics. His blood results aren’t quite as good as they have been but I think that that is only to be expected after all despite all outward signs to the contrary he is fighting an infection.

Sunday 16th March

We’re home! Phew, we are home with a bit of a rash but no more high temperatures and promises to go back tomorrow for blood cultures and IV antibiotics and the day after and the day after and for a probably for a few days more. I am still hoping that once he gets a negative culture that I will be able to learn to do the IV antibiotics at home. It’s great to be back although we had to detour into South Gloucestershire on the way home to avoid the Bath half marathon. We made it back by late afternoon and went for a walk. We saw several of Rob’s colleagues on our walk who all commented how well William seems, we didn’t disillusion them by telling them that we had only been out of the hospital for 2 hours!!!! I took his NG tube out on Friday too so we can see what he really looks like. Although the funny thing is that I never really noticed it and now it’s gone I don’t notice that it’s not there either if you know what I mean. Have rushed around catching up on the laundry and unpacking just in case we get tied up again at the hospital, we try and work on the theory that if we are all packed and ready to go and the house looks reasonable, then we won’t have to be away but if the place is a mess and we have no clean socks we are bound to have to stay!!! It doesn’t always work!!!

Posh tomato and cheese baguette

Well we have slipped into old Saturday routines, bar the fancy coffee. William continues to do a good impression of someone who is not ill by charging around the room. Cath went into town on the bus during William’s mid day nap because the tube doesn' t run out this far and they don't take oyster cards either. As I was remind in an email I have just read, we were somewhat spoilt being in central London for William’s BMT, although Cath did return with sandwiches from Pret (my fav Posh Tomato and Cheese). This afternoon a walk to the park, no sheep but a muddy Gillie and finishing it all off with a bath in a baby bath flooding the room with splashing.
William’s temperature has been good today although we did finally have a high reading from under his arm this evening. The Doctor came in this morning and forgot to examine William as he appeared to be taken back on how much he has grow since the last time he saw him (William has a bit of a rep for stressing out RUH Doctors who need to take blood using a needle). He then told us that all three lines where infected which is a worry as we were under the impression that a double Hickman had only two lines (it's all in the name!). We think he was talking about culture samples as there were mean't to have been four samples but the nurse could not get a sample from the yellow wiggly during the night so there were only three. So both lines are now infected and they have changed the antibiotic. Normally what happens is the drug is put down the line then the line is flushed and finally hep locked (hep lock keeps the line free flowing and clear). The new antibiotic is just put down the line and left so it sits at the site of the infection no flush no hep lock seems quite clever. They do one line at a time every 12 hours for the first 24 hours and then one a day. So we are hoping to leave tomorrow after lunch and then Cath will take William in everyday for the antibiotic and to have cultures taken until there is a negative result and then she will take over giving the antibiotic at home.
Cath sent me home at half seven saying Gillie had been trapped in the car long enough and that she wanted to read her book. I think the truth is, we beginning to depress each other as we looked around the room, and if you half closed your eyes you were back on Fox or Robin. We were not worrying about us but those we had met up there who have so much more to deal with. BMT is great when it works but it is a last resort for all that go down that path. This short stay is a blip for William and over all he is doing really well. So when you talk to your maker next ask him her or it to look over those kids you don’t know but are having a last shot at life.

Different Hospital, same Microwave meal.

Day two in the RUH and William has a line infection similar bacteria to at Christmas. Luckily that was three months ago and his immune system is much stronger now and so far his temperature has not drifted over 38 too much unlike at Christmas when it was off the scale. Although there is some dispute about what is his temperature as, there are two readings his under arm readings are near normal whereas his ear readings are just over or just under 38. The infection is in only one line, which is good and the antibiotics that were started last night are the right ones to deal with this bacteria (until the cultures came back the doctors didn’t know what they where dealing with). It is very strange sitting in a hospital room eating Waitrose microwave maccy cheese again with nurses hooking William up to syringe drivers. Hopefully it will not be for long as once we get a negative culture reading on William’s blood samples we can go home. William will be on a 10 day course of IV antibiotics once at home, which we will be trained to give him over the weekend. A little scary as the lines go straight into his heart. William is quite happy in himself apart from doing a good impression of a two bar heater every now and then. Cath is doing ok but is missing tea, as there is a no hot drinks rule on the ward, which also means no fancy coffee from Starbucks in the morning either.

Home Alone again

I just got back from the RUH in Bath where William and Catherine have taken up residence. This afternoon after a visit from the vicar (in which Cath forgot to offer tea and the house was looking lived in) William was feeling warm so we took his temperature and it was high again. A quick call to GOSH and a word with one of William’s doctors and the High Temperature protocol was inacted. We packed the bags and phone the RUH to tell them we were on our way. It is probably a line infection but hopefully it will not be as bad as the one at Christmas. It was very impressive when we got onto the ward and although they where snowed under, within half an hour, cultures had been taken, two doctors had looked W over and antibiotics were running. Now we have to wait to see what grows in the jars so the right antibiotic can be used. So a trip to Waitrose after work for me tomorrow to get Cath a microwave surprise, all very familiar but at least it only takes 25 minutes to get there.

Thursday 13th March (2 weeks off 6 months!)

We went to GOS yesterday. We had a good trip up although it takes a good 3 hours, even with a pretty early start. They are very pleased with William’s progress and we are stopping the extra fluids so can get rid of the NG tube, Hoorah! We are going back in another month all being well and after that it will be longer before they need to see us. We saw a lot of people that we know from Fox. All in all, most of them are doing pretty well. Keller is at home, although still needing a lot of care and we caught up with Jack who is getting on well. I lightened the mood in the waiting area when I got up momentarily to help William with something and sat straight back down again only to find that my seat had returned to the upright position and that I was on the floor, it’s a good job that I have a well cushioned derriere! I always find that it is a bit of an emotional day going back to GOS. The home trip took a lot longer (no, we didn’t get lost this time) but there was a nasty crash on the motorway so it took about 4 ½ hours, not including our stop in Basingstoke to collect Gillie from Auntie Nicky’s, have a piece of cake and help Ella and Hannah build (or knock over) the world’s biggest duplo tower! William woke up with a temperature of 38.2 at 2am but we waited a while and it went back down on it’s own so we are all a bit tired today and hoping that we won’t have any more excitement of that kind.

Tuesday 11th March

WHAT is she trying to feed me today?

Grandma and Grandpa brought Phyllis to play with us today which we enjoyed very much.

Tuesday 11th March

Robert looked after William yesterday so that I was able to go to Lucy’s funeral. Nick went to the service with me. It was a truly, moving service. The loss of Lucy has left me deeply saddened and made me question what I believe. I am angry that anyone should lose a child and that life is so unfair. I admire the great courage that both Claire and Adrian showed at such a devastating time. I left knowing that so many people loved Lucy. That despite her tragically short life she will always be remembered and that she has left us all with many happy memories.

More pics

Thursday 6th March

We have been getting on very well at home. We have stopped William’s overnight milk (well non milk really but I digress) feed which at least means that I only have to get up when he hollers rather than setting the alarm for 3 or 4 am to change the bottles over. He is sleeping much better (touch wood because whenever I say that he has a bad night). We had a lovely family outing to the beach this weekend, no prizes for guessing which one! It was well worth the journey for a run around on the sand and chance to get water in our wellies. William’s Hickman line sprung a hole this week. So we traipsed over to Bristol via Bath (not sure why we bothered going to Bath first but at the time it seemed like the right thing to do) They cut off the faulty bit and glued a new bit back on so all ok now, we were anxious about an infection but seems that we have escaped this time. The location of this repair also means that the other repairs have been replaced, if that makes sense so fingers crossed we won’t have any more problems with it. It shouldn’t be too long now before he can have it removed.
We are obviously deeply saddened and touched by Lucy’s death and can hardly bear to imagine how Claire and Adrian must feel.

A Brave Little Girl

Lucy died on Monday our thoughts are with her family

News

With heavy hearts we write this entry. William continues to do well and Catherine will post his adventures later this week. Catherine has told you of the amazing family who had the room next to her and William on Fox when he first went in and how Claire kept Cath buoyant in those first weeks. On Saturday we had a sad email from Claire and Adrian. Lucy who is a couple of weeks older than William has reached the end of the road with her treatment and there is nothing left to try. They are going to a hospice this week for a few days to spend time together as a family. There is nothing else to say other than that our thoughts and prayers are with them every minute of the day.

Monday +137 – Thursday +147

It has been a while since the last entry, things have been so busy for me. Lots of William care and supervision and settling back into the ‘normal’. We went up to GOS last week and he had his Immunoglobulins and check up. He has now stopped his immune suppressant and is doing very well so far without it. It was another very long and tiring day but we don’t have to go back until mid March, phew! I am also another year older, and perhaps this time a little wiser. Mum started her chemo on Friday and is being very brave, I admire her courage. On Saturday Bryher came to stay which was lots of fun and David, Nicky and the adorable Otto joined us on Sunday for a lovely lunch (if I do say so myself! thanks in most part to Sir Jamie!). Rob started his ‘Just a walk’ training on Sunday morning and set off before dawn with Gillie in tow. A few hours later, after some complications we were able to successfully retrieve them (Rob has a new mantra, I must always charge my mobile phone and also learn my home phone number!) and they had travelled an impressive 20 miles or so. Auntie Nicky, Granma Ruth, Hannah and Ella came for tea on Monday and William played remarkably well considering his time away. It was lovely to see them playing together and William made me laugh when he tried to take Ella’s blood pressure by putting the toy cuff on her leg much to her bemusement. Grandma and Grandpa came for a visit on Wednesday and assisted whilst poor William had to have his NG tube changed and his Hickman Line dressing done. This morning Vikkie, Luke and Tamsin have been over for a cup of tea. It really was very nice to see them, William was pleased to find a fellow Jaffa cake lover although a bit perplexed that Tamsin didn’t want one (at 6 months old!).

Sunday +136

Another week has flown by with all the excitement that a second birthday brings! Things are jogging along quite well. We had to go to the RUH in Bath on Friday for a GFR test, which checks his kidney function by injecting some lovely radioactive stuff (only a bit!) and checking his bloods over several hours to see how quickly his kidneys pass it through. He ended up having a canula put in unnecessarily because the doctor didn’t listen to me which was rather distressing for William and myself but no long term damage done. It was quite nerve wracking though I was imagining superbugs all over the place and held tightly to my antibacterial wipes! William is getting fitter by the day and has done lots of walking this weekend. We went along the canal yesterday, holding him securely by the reigns to stop him chasing the ducks! Today we went along part of the East Mendip way which was beautiful it followed the banks of a river past ruined lime kilns through a deep narrow valley.

Just A Walk To The Beach Update

Cath is home and things are beginning to move. We are slowly filling a notebook with ideas. We hope you have seen the Website which Dave has started Cath is slowly putting pages together which I think she is going to run past Dave’s expert eye before they go live as he has done such a great job so far. We have sent out profile forms to go on the website to be filled in by the Long Distance Travellers and the Support Team. The first is back from B, for those worrying about the identity of her inflatable friend it turns out it is going to be a croc. She has found a website which does cheap OS maps http://www.dash4it.co.uk/ but before you all rush out to buy maps please talk to us about other LDTs who maybe travelling in a similar direction that you may be able to share resources with. We are going to set up a bank account soon and Doug has agreed to be Treasurer with Cath as co signature. We spent yesterday evening designing stickers to give away and there is much more in the pipeline. We have an email address now as well and it is info@justawalktothebeach.org Our congratulations to Tasha and Jim on the purchase of their TANDEM!!!!

William's 2nd Birthday

We are so lucky to be celebrating William’s second birthday at home. We sat in a meeting with William’s care team in GOSH at the start of the year and said that we would like to be home for his birthday, they said that would not be possible. The good thing was that no one told William and he improved so much that we made it with weeks to spare! On such a special happy day you can’t help think of those you have left behind and what they have to carry on going through.
After an early start, more to do with mummy wanting to open presents than William, we brought William down stairs to a heavily decorated living room. Not quite sure how Cath found the time after making cakes yesterday she had managed to make paper chains out of wrapping paper and a banner as well, not to mention the balloons and fairy lights.
It was not all presents and cake, Alex came to take bloods and change William’s central line dressing. After a pit stop at the chemist for Granma Sue and Grandpa Doug to pick up some strips that didn’t come in the dressings box the change was completed and Alex rushed off to teach some nurses in Trowbridge.After William had recharged his battery and we had eaten a lovely lunch, Pappa and Granma Ruth came bearing many gifts and after a fog of flying wrapping paper he emerged with what can best be described as a misshapen washing up bowl which he sits in and we spin him around the floor. Great fun! It has been a lovely day, thank you everyone for thinking of us.

Monday +123 – Friday +127

We have made it through a whole week at home! (touch wood quickly, William has a teeny bit of a temperature!) It has been very tiring and I am still adjusting. William has still been unsettled at night although we have reduced the milk further. He has been in good spirits all week and lots of fun. Grandma and Grandpa came up on Tuesday and the day flew by. We went up to GOS on Wednesday. The journey went as well as could be expected although we arrived a little later than we had planned. Clinic was rather stressful. On arrival William spied a big ride on racing car and made a bee line for it, unfortunately we had to hold him back (physically) with his very noisy protests until we found out if he was noro virus negative and ok to mix with the other children. Fortunately he is, so we were able to let him play with everyone and all the toys and he was able to get on the car, much to everyone’s relief. We saw an immunology doctor who we had never met before, which is always useful!!! However, William is doing very well and they have reduced his immunosuppressive drugs further and we are in the process of reducing and removing his diuretics and anti sickness meds, so all good. We caught up with a few families who we know and some are doing well, others not so well. I went to see Claire, Adrian and Lucy who had just been admitted to Lion ward for the next stage of their fight to get Lucy well. I was SO impressed with Lucy who can not only correctly identify and say diamond but can also pick out colours in both English and French (I am sure it is just the age difference, she is almost 2 weeks older than William!! No pressure William but I am expecting great things from you in the next few days!!!) After about 3 hours in London we headed happily west again. Thursday and today have passed relatively uneventfully (which is the way we like it).

Update from home!

Friday +120 Saturday +121 and Sunday +122
We had a good night, despite me remembering at about 1am that I had forgotten William’s 10pm meds and leaping out of bed! Some of the milk giving equipment arrived but not all so we are making do for the moment and they are sending more bottles and piping (that’s not the technical term, funnily enough!) to arrive Saturday morning. William is a bit tired and breathing a bit heavily. His blood sample from Friday showed a low haemoglobin but was probably just a bit dilute, we had it repeated in Bath on Saturday morning when it was fine. He has been enjoying being at home and playing with all sorts of things (some that he shouldn’t!!) although has been tired. Granma and Poppa came to visit this morning and we all took Gillie for a walk and opened the last of our Christmas gifts! It was so lovely to see Gillie again, he is staying away for a few more days until we get ourselves more sorted and Wednesday’s trip to GOS out of the way. William has had two very unsettled nights with tummy ache. We have lowered the milk levels a bit now and are hoping for more than one hour of uninterrupted sleep at a time tonight!!

Yes,our stay in GOS is finally over!!!!

We left GOS this morning at about 10.30 (before they could change their minds!!) after 18 weeks, 3 days and 10 1/2 hours (or thereabouts!!). His kidney function tests are a bit wonky still and his neutrophils are only .52 (like to see them over 1, usually get some boosting GCSF if they are under .50!!) but anyway with Philip acting as DADNAV (cheaper and more companiable than TomTom) Rob arrived before William awoke and after numerous trips to the car and congestion charge paying and the like we escaped! Made Rob laugh when reading out our number plate over the phone I said W for Wilbur, it was the first W word that came to mind!!!!! Very exciting to see the countryside and we had a good journey despite the temporary closing of some roads which necessitated a trip around Trafalgar Square! William seemed to know where we were when we got home and slept for some of the journey which worked out well. We went for a little stroll around the block and played. We have rigged his overnight milk up on an easel (the proper stuff is being delivered tomorrow!) and he is peacefully asleep and has had his meds, as prescribed. Alex, our lovely community nurse (I would have said that even if I didn't know that she reads the blog!) is coming out in the morning to do bloods and on Monday as well so we will see what those results bring. Whatever happens we shall try and make the most of every moment together.

Could this really be our last night here?

Saturday +114 and Sunday +115 and Monday +116
I met Nicky, Andy, Hannah and Ella at the Science Museum for lots of educational fun. After a pizza (just for a change) we met Rob and William. It was so lovely to see William back with his cousins after so long. There was a, who can get the wettest feet competition which, as a result of Nicky’s swift intervention (or sabotage depending on your perspective) on Ella’s behalf William won!! Planning our exit strategy continues and I am cautiously optimistic that I will be posting this not from Tuttis but from home!!!!! The metaphorical (although am secretly hoping, actual) champagne is on ice. No TPN tonight hoorah and milk up to 44mls/hour. This evening William is refusing to sleep and is rather overtired. I am off to get his meds in the feverent (and somewhat optimistic) hope that he will be asleep on my return (he wasn’t, he had managed to pull the IV pole towards him and zero the milk rate!) During my stoic, I am ignoring you stance he had already managed to unscrew a crucial part of his milk dispensing system resulting in a minor flood!!!!! I received some worrying news this morning from Claire that it looks like Lucy’s leukaemia is returning for the second time, please pray extra hard for Lucy and her whole family as they face this unimaginable horror.

Tuesday +117
Well it’s been all go here. I had an interesting meeting with the dietician discussing milk feeds and dishing out the formula at home and nutrition generally so lots to think about, a fluid target of 1.2 litres (to help flush his kidneys) including 800 mls of milk to start with. All aspects subject to much change as we progress. We also had a lovely meeting with our CNS Rachel who is overseeing our discharge and a bit of a what to do and not to do when you get home recap (as it is a wee (!) while since our first going home talk!!!!!!!!) She is fab. Lots of things are getting organised now and I have bags of medicines to take home (he only has to have meds about 16 times a day now!) Rounds came and went, no much to report there. Kidney function a bit wonky but otherwise doing ok. He is having his Immunoglobulins tonight to keep him going for the next 3 weeks. Had a lovely day with Mum culminating in (another) bottle of wine and making up words to fit the crossword when we got stuck.

Wednesday +118
Another super hectic day. Lots going on and even a phone call from Dr Peter Rudd in Bath welcoming back to the county (only a little prematurely, we hope) and assuring us of our open access to the childrens ward and their availability if we have any probs. Had a Hickman line safety talk which was v informative and useful. Collecting together some more bits and bobs just to ensure that the car is packed to the rafters. There is still a bit of concern regarding William’s creatanin levels which they will double check tomorrow and unless they are WAY up I think that they will let us go, with repeat blood tests on Friday and Monday and then back to clinic on Wedneday. There is so much going on in my head, I wouldn’t be surprised if it explodes! Phyllis and Dad joined Mum and I today, and I was able to enjoy a lovely meal with P and D whilst Mum held the fort here. We all went to the park to visit the sheep and ducks and play on the swings. It was lovely. I saw Keller’s Dad today and he is really doing very well now and they hope to be back on Fox in few days and generally not much longer in the hospital so hoorah. Claire popped around today and it was lovely to see her although would prefer if we could meet in coffee shops not wards (with our children and husbands safely in tow!) We will be thinking of and praying for you and your darling girl over the weeks ahead.

By the time you read this

I will be on the first leg of my journey to collect my family from GOSH. I'm driving down to my parents tonight and leaving early for London tomorrow. As long as William does not have a temperature between now and late tomorrow morning, he is coming home after 129 days. The next time Cath posts a blog it will be from home. Thank you everyone, we can now see the edge of the woods.

Week 17

Saturday +107 Sunday +108 Monday +109
Met up with B, fun Dave and Tasha for a birthday lunch for B. Lovely dutch pancakes and then a rendez vous with Rob and William in the park to chase a few squirrels and try and get wet in the fountain. Otherwise the weekend went smoothly. We took our red virus alert poster down today and stopped wearing aprons. Milk feeds are continuing to increase.

Tuesday +110
Unfortunately they have detected noro virus in Williams’s poo again. It doesn’t mean that he has been re-infected more that it was hiding or that the levels were lower and just not detected. This is a bit of a setback but at least explains the continuing diarrhoea. William had a lovely day with Grandma and me and lots of fun painting with the play assistant. Grandma and I had a nice meal and a tipple in the evening. A silly student nurse used the intercom and woke William up for a couple of hours though and then he accidentally pulled his NG tube out (great!).

Wednesday +111
William had blood overnight (to boost his haemoglobin) so was a bit heftier again this morning. Otherwise all is ok except for a few funny eczema types spots that seem to be spreading but we have a new cream! His Kidney function is still a bit wonky though but nothing particular they want to do at the moment. William ate some mashed potato and pureed chicken…HOOOORAHHHH. I think that makes 60 days since the last solids (but if anyone thinks different then you are probably right!) He couldn’t wait to get in his high chair and get stuck in, although he only ate about a desert spoonful (which was quite enough for a first attempt). We are VERY excited. The TPN volume is also being further reduced as the milk increases.
Sadly it was Mum’s last day today and Dad came up too. As many of you will know Mum was (shockingly/scarily) recently (Christmas eve, nice timing) diagnosed with Non Hodgkins Lymphoma of the pereipheral T cell variety (a lot more exotic). She starts her Chemo this Friday so cross all your fingers and toes. Honestly, if she wanted to talk about something other than William she only had to say!!!!! Now it’s a whose got the most immuno suppressed neutrophils competition! The doctors are confident that they can treat her. Seriously though, William and I are going to miss her being here terribly but we will be chatting even more on the phone and before long, we will be visiting her!

Thursday +112
Granma and Poppa came to visit today and William had BAGS of fun with them, lots of sticking and charging around. We did spend a bit more time inside than we would have liked waiting for the doctors rounds and when they hadn’t come at 4 (and it was getting darker and rainier) I went in search of them only to discover that they had forgotten to tell me that they weren’t coming! Anyway when we finally got out William ran first around and then through the fountain in Russell Square! More chicken and mash and rice crispies (the new favourite)!

Friday +113
Noro virus negative again and talk of going home sometime soon…..here’s hoping! Lots of fun today with Uncle Nick, William rediscovered the joy of swings. Mums chemo has been delayed by a couple of weeks (bit complicated, due to drug trial that she is taking part in) so we are eagerly anticipating her return next week for a couple of days!

Blog Hijacking

Not really a Hijacking just until we have the "Just a Walk to the Beach" website up and running (which Dave and Cath are working on) I thought I would bring you all up to date with what is happening. The number of Long Distance Travellers has grown to 11 and they are coming from all directions (I will list them later). As you know we plan for the LDTs to meet on 14th September at Saunton sands to end their journeys in the surf. As we are all starting from different places and at different times we plan to have a launch party on the 24th May hopefully in North Devon this does depend on William’s health so it maybe a little closer to home. This is when we will be issuing sponsorship forms and T-shirts to the LDTs. As well as having a good time we will be taking photos to go on the website and to give to the press.
Now some of you are going to be left holding babies and small children while the rest of us are off having fun. So you don’t feel left out there will be a 10km walk along the Southwest Coastal path and back along the beach on the 14th. If all goes to plan as you get to the middle the LDTs will arrive so we can all do the last leg together.

Now the list it only seems fair to list in order of distance.
Steve will becoming from High Peak that’s somewhere up North.
Swimming to Devon in a pool Lisa (but never leaving Poynton, not sure if the pool will be full of water or wine).
To make sure Steve keeps to the speed limits he will be teaming up with Rob W in Stoke.
From London Tash and Jim, the rumour is on a tandem so that Jim does not have to wait at the top of every hill.
The Doctor on the team Dr Battam will be coming from Abingdon with his calculator to add up the money and miles but no plasters wrong kind of Doctor.
Coming from Basingstoke Andy with support car and plan to stay in 4 star hotels along the way. For others travelling in the same direction there will be room for luggage in the support car.
Once the website is finished and as long as his bike does not go missing Dave will be pedalling from Winchester.
Walking not cycling Rob C carrying an eight-foot surfboard, if only I was a body boarder.
From Church hill (Bristol) Ben carrying an egg or fish or maybe just a body board or even a kneeboard who knows.
From Plymouth B doing a bit of both walking and biking carrying a blow up toy (please remember there will be children on the beach). Note to other LDTs B has bagged the comedy surf transport only one blow up toy allowed and I want to see her standing up on it as she catches that wave.

Week 16

Monday +102 (January 7th)
Rob is wending his way back to Holt as I write this and I am holding the fort here, although I so wish that we were with him. William is still doing well, they are dropping the TPN to 16 hours a day which is progress and his milk is up to 21mls an hour for 20 hours. He is not drinking very much and is putting on some weight so the reduced TPN and a lower fluid target will help that. His neutrophils are back under 1 again, hopefully they will settle a bit higher in time. The new student nurses have been annoying me today (with their giggling, inexperience and lack of common sense, I know they have to start somewhere but must it be with William!? At least they don’t get to handle any drugs!!) Otherwise we’re doing OK (I think!).

Tuesday +103
A lovely day with Grandma and William. A lovely walk in the park and a visit to the sheep. Rounds came and went, we are still in ‘wait and see’ land. Unfortunately William was sick at 10pm and brought up his NG tube. That was replaced relatively untraumatically and peace restored once more. TPN down to 12 hours so more line free time.

Wednesday +104
William was sick again at 6am but (touch wood) not since. This time the NG tube stayed down, phew! Granma Curtis joined us this afternoon and we had a lovely time playing and seeing the animals. William has needed IV fluids today to replace losses and help his kidneys which are struggling a bit. This will undoubtedly make him even puffier/heavier but this is the lesser of two evils. They have consulted the renal team and William is having an ultrasound on his kidneys tomorrow just to check them out. They think that it is probably the Cyclosporin (the immunosuppressant) that is causing the issues as it effect different people differently so they are going to start reducing the levels. They would reduce the levels soonish anyway as we are so far from the transplant date. We will have to be on the lookout for GVH as the levels reduce so time will tell (as it usually does!). Rob is joining me later (hoorah) we have a meeting with the ‘team’ tomorrow which is a new thing that they are introducing for their most loyal customers! Will tell you all about it tomorrow…. Grandma will also be with us tomorrow, so a full house and a chance for Mum and I to escape for a nice lunch together. Ooh news flash have just seen trailer for ER on More 4 so not long until it will be on ‘real’ TV (cos I really need more hospital drama!!! If only the docs here were that dishy!)
Happy Birthday B!!!

Thursday +105
Well we didn’t get off to a great start with Mum’s arrival delayed by a cancelled train but we went off to the meeting leaving William in the capable (!?) hands of a student nurse (knowing that mum was only minutes away!!) and he was fine and not crying when she arrived! The meeting was with the consultant Cathy, our doctor at the moment Zoe, our going home nurse Rachel (Clinical Nurse Specialist who is fab!), our favourite Robin nurse Hayley and the physical therapist Annabel. It was a very constructive meeting, Cathy summarised where we are now and Zoe nodded a lot. We talked of William’s progress and kind of jokingly said that we would like to have William home for his Birthday but it looks likely that it will take a lot longer than we had hoped/thought of late. We talked about the support we have received or not as the case may be and are now getting more frequent play assistant visits. We are also getting a poster to go on the door with William’s schedule on it and our names as we know the nurses names (generally without looking at their badges!) and they still call us Mum and Dad!?!?!? Apparently they found our feedback very useful and probably got more from the meeting than we did. Lets hope we see a bit more of Rachel soon!!!!
Mum and I scooted off for lunch (which was lovely particularly the Tiramisu!) and a tipple or two. Meanwhile Rob was summoned to Ultrasound for a peak at W’s kidneys which are fine to look at. We had a nice afternoon and another trip to see the sheep and lots of slides on the slide despite the rain. Rob headed off, Mum and I had dinner after William finally went to sleep and I tried (rather unsuccessfully for an early night) and Mum went to her lovely Sick Children’s Trust accommodation.

Friday +106
What a busy day. They are a bit concerned about his increasing weight and high levels of certain stuff in his kidneys so more investigations are being lined up. I was in the shower when the Doctor arrived so hastily dressed for our morning consultation. I was having my first cup of tea when we were summoned to x ray for a chest x ray. On our return the play assistant, Becky came bearing bubbles and stickers which went down a storm. After a sleep and lunch for the ‘grown ups’ we went down for another ECHO (ultrasound on his heart). William was very, very good and lay very still. We saw the other end of his Hickman line on the screen right in his heart!?!?!?!? They saw some fluid on his chest but the heart stuff seems fine. They have given him some oral diuretics to help shift the excess fluid/weight but are monitoring him at the moment and will see how he goes. His heart rate is quite high. Mum headed off and William and I went for a little wander in Russell Square. Rob came nice and early and William went to sleep eventually.

Just a walk to the beach up date

Just returned home to find a stack of emails from you mad people who have signed up to take part in this dash to the surf and sand. As I'm doing the walking Cath is doing the running of the back office. At present she is writing long lists of things to do but one thing we have decided is that the journey will end on Sunday 14th September. So start breaking in hiking boots, oiling bikes and waxing down surfboards. More news soon from Team Curtis.

Just a walk to the beach

Saturday +100 and Sunday +101

100 days since transplant and all is well on that score so that is something to celebrate. Lets hope it won’t be long before we can head on home. We have spent a nice weekend all together and enjoyed our trips to the parks. The bare walls left by the removal of the Christmas cards and decorations have been more than filled by the enormous tractor posters and our exciting sticking collages! We had a nasty NG tube replacement incident on Saturday morning but we have all recovered now.

More ramblings..

Wednesday +97
Mum was able to join me for the day. We went and saw the 2 sheep in Coram Fields who were looking a bit chilly, as were we! William has been in good form today. The milk is up to 11 mls and hour and his weight and fluid balances are more stable. His anti diorrhea secretion medicine has been reduced in strength with a view to stopping it all together by the end of the week. He did have Immunoglobulins last night but otherwise was very peaceful and I was able to watch Sense and Sensibility more or less uninterrupted. Unfortunately his sub cutaneous infusion decided that it wasn’t going to run through anymore at 5.45am this morning and we had to put another needle in which wasn’t a popular decision (with anyone). We did all get some more sleep though. Jack went home today which is marvellous. He had his transplant the day before William so they have been here all the while that we have. It will be weird not to see his parents around but we will keep our fingers firmly crossed for the future for them all. I also saw Justina and Eldoras our next door neighbours from Fox, they went home the Sunday before Christmas and are also doing well. It’s harder to get to know people on Robin because there is no sitting around in the corridor and we are all tucked behind double air lock doors but occasionally the kitchen provides a chatting opportunity. I have just worked out that William had been 40 days without milk or food so feel that we should celebrate the reintroduction of the milk a bit more…so HOORAH!

Thursday +98
A relaxing morning with my boy and then Granma and Poppa joined us for another expedition. Dressed for the Arctic conditions (although without the snow) we ventured back to see the sheep. William was reluctant to leave the park but much cheered by some sticking and drawing back in the room and lots of fun with Granma and Poppa and his new amazing collection of really large tractor posters (so thanks to all at New Holland, Claas and Massey Ferguson for brightening our walls and potentially those of the entire ward such are the size and number of posters). William has had a third virus free poo so Hoorah for that! His engraftment is still 100% so double hoorah! The platelets may have fallen because there is still comparatively little marrow producing the cells and they were putting all their efforts into helping William get through the line infection. He has had his last dose of antibiotics for that today. I had a lovely meal with Ruth and Phillip in the semi darkness of the room this evening mmm I love mango chicken! Must get back to my boys now (that is Ewan and Charley and their Long Way Down book)!

Friday +99
Moan, moan, moan, moan, and those nurses! and a lovely lunch in the room with Di! No, all is fine really, just a bit fed up of never having control of anything and always fitting around a schedule which changes at a moments notice and no one tells you about until it is actually happening! Surely I should be used to that by now though (says Rob, thanks for that! (who it transpires was referring to our life outside the hospital (can I remember what that was like?)) Confused? me too but a welcome return of the brackets!J William is fine and a happy chappy today even though our walk was rescheduled to after dark when the parks are all closed anyway and it was raining! Anyway Rob is back here today so must......aarggh go and stop that syringe driver beeping!!

Do You have anything better to do in September

Just a walk to the beach……
…to support Jeans for Genes and
The Sick Children’s Trust.

The Challenge
To get from your doorstep to Saunton Sands in North Devon by any means possible WITHOUT using an engine. You must take with you something to catch a wave with.

What do we need from you?
The commitment and resources to make your way from your home, camping as necessary en route to Saunton Sands to arrive on a specified day to catch that wave.
An enthusiasm for raising sponsorship and willingness to take part in any publicity surrounding the event to promote both of the charities and raise awareness.

Happy Holidays

Christmas Eve +88
Well we have a room full today as Grandma, Grandpa and Uncle Nick have landed to try and bring some sort of normality to Christmas. William continues to have high temperatures and is shaking a bit, the paracetamol does not seem to be doing much to control the temperture and William is off the scale on the thermometers. It was rounds today as tomorrow the consultant will be tucking into turkey at home and the ward will have weekend staffing levels. William is going to start milk feeds later on in the week but his fluid balance is a problem as he is holding onto too much liquid from his TPN so they are going to give him diuretics. This has made him very heavy and puffy and put his blood pressure up too. William has spent most of the day in his cot only to sit on mummy’s lap for a little while. This is the poorliest that he has been.

Christmas day +89
Merry Christmas
Well it’s raining and William rose late so we were not ready for the arrival of the Battam troop at just gone nine. He has been more chipper this morning but his temperature keeps breaking through the paracetamol. Father Christmas filled William’s stocking and a hospital pillowcase as well and then returned during the morning with dancing reindeer and another present. Grandma, Grandpa and Uncle Nick left for Christmas lunch at one of the local hostelries. William fell asleep and Cath and I had a quiet lunch. For all of you still getting over the stress of cooking Turkey and all the trimming here’s our menu: Veggie haggis, potato gratin, honey roasted carrots and parsnips served with port and cranberry sauce and not forgetting the bread sauce total cooking time eight minutes. No room for pud, which was good as Waitrose had run out! The best present we had was a norovirus negative stool sample only another two and the virus will be gone. Fingers crossed the next test is Thursday followed by Monday (New Year’s Eve).

Boxing Day +90
William continues to improve and the antibiotics seem to be doing the job. Grandma and Grandpa took Cath and Uncle Nick out for a nice lunch and a few drinks so William and I had the place to ourselves. Grandma brought back some cute min jam jar sized Heinz ketchups for Rob that were acquired (Lisa style!!) from the hotel and I think that they were his best present! We had lots of fun in the afternoon balloon modelling (that’s shaping them, not wearing them!)

Thursday +91
Milk feeds have started at one ml an hour for those of you still using old money that’s a teaspoon every five hours. This means we had the addition of another pump on the IV stand, bringing the number of machines to eight, putting the pouches of TPN almost out of reach of the nurses. We are also running out of electrical sockets as a number don’t work anyway. It was my turn to go out for lunch today as Grandma and Poppa came up and took Cath and I out for a burger. We stopped at the DVD store and spent some of William’s Christmas money for him on Curious George, which seemed to go down well. William awoke from his lunchtime nap and was delighted to find both sets of Grandparents in the room as Sue and Doug had baby sat while we were out.

Friday +92
Well we are not quite pacing the room but I sure the nurse was getting a little annoyed with us constantly asking whether the results were back yet. We have been waiting all day for the results from the stool sample taken yesterday and for engraftment test as well. Cath and I went down to Fat Face to spend vouchers and Christmas money and to make uses of the Battam Baby sitting Service or BBSS, before they pack up and head off back to the seaside. William’s temperature is around 37.5 for the last two days which is much better than 40 but not 36.5 which is normal but you find yourself being quite happy with any reading below 39 and it quickly becomes the norm. The milk feed continues to go well and is being increased at a ml an hour.

Saturday +93
We went outside!!!!!!!
Second stool sample norovirus negative!

Sunday +94
We went outside again!!!! With Granma and Poppa.

Monday +95 New Years Eve
We went outside again and saw Tasha!!!!
We are allowed out as long as we avoid strange people who might have lurgies and busy places. Fortunately there are a few small squares (with grass in!) around here that are not too busy, there are even wooden tractors in one of them! William was not at all fazed by his first trip outside but pointed excitedly at the cars, trees and lights. He even walked a little bit. It was amazing to all go out together as a family. His antibiotics are down to one and his platelet levels are recovering nicely after dipping down to a scary pre transplant 30. His neutrophils have been boosted a couple of times with a bit of GCSF so they are quite numerous at the moment. Rob and I saw the new year in with a little bottle of champagne.

Tuesday +96 New Year’s Day
HAPPY NEW YEAR!