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.