New Beginnings

Posted by Mark

It has been nearly half a year since the last post and despite starting something many times I never quite got round to it so here's hoping that I'll finish this time!

The last post was about the Marathon and I am sorry to say that I haven't done a single run since then and now that the clocks have gone back it's very unlikely that I'll be venturing out after work to do any running.

Sammy continues to do well although he has just finished a lengthy course of antibiotics for a really bad cough that was probably the worst he's ever had. We took a cough swab and fortunately it didn't reveal any nasty bugs but it was not very nice for Sammy and of course we had to increase his physio and really try to increase his fluid intake which is a huge challenge for us at the moment. Still he is developing well, his language development continues to amaze us and he is just generally a wonderful little boy who is inseparable from his equally wonderful big brother.

Creative boys indulging in their shared love of drawing

Since the last post Sammy has begun pre-nursery and he absolutely loves it. It was a slightly worrying time because as anyone who has put kids through nursery knows, they tend to be pretty germy places! Prior to enrolling him we met with the nursery manager who luckily enough has a nursing background and so was already aware of Cystic Fibrosis and some of the associated risks. Shortly before he was due to start one of the Clinical Nurse Specialists from our team went to visit the nursery staff to talk and teach them about Sammy's needs and about medication and what he should and shouldn't do. So far it has gone really well Sammy is very excited every time it's a nursery school day. It has been a bit of a challenge for Juliette to try and work out how much creon to give for the school lunches but the lunch providers were very helpful and Sammy's key worker seems to have got the hang of it. At the moment his creon capsules are emptied onto apple puree on a spoon but he is learning to swallow them whole by practicing with empty capsules filled with Hundreds and Thousands and is doing very well!

As well as nursery, which is 3 days a week, he has started at 'Mini Musicians', a music session for toddlers which he attends once a week and also absolutely loves. We really want Sammy to be actively involved in music not only because it is a good thing in and of itself, but because singing and particularly playing wind or brass instruments have the potential to improve his lung function. He is already a very accomplished kazoo and harmonica player and there is always plenty of singing happening in our house (particularly as Juliette has also joined a choir!).

Cystic Fibrosis Trust

If any of you get the Cystic Fibrosis Trust's magazine 'Is' you will see an article based on an interview with Juliette regarding how our diagnosis went. Unfortunately, as is often the case with interviews it was edited and re-written so much as to bear little relation to anything Juliette actually said. (For a more accurate view, see here), but hopefully some readers will still find it helpful to them. You will also see Sammy in it quite a few times as they are advertising the new parents' pack that features Sammy on the front cover and throughout. You may also have received a fundraising flyer also featuring our little star:

A lovely surprise to receive this in the post

This was a really good project for us to be involved in and came about after the trust advertised on Facebook for parents to get in touch to discuss what information they would have found useful around the time of diagnosis. After much email and phone conversation between Juliette and Michelle from the CF Trust, a photoshoot was arranged to get some images for the pack and we had a lovely time with some excellent photos coming out of it.
You can download the pack here

Sammy and Joseph during the Parents' Pack photoshoot

When the pack was finished we were invited to the CF Trust's new offices in Whitechapel where we attended a presentation of the pack as part of an all staff meeting. Being just down the road from the hospital, we also dragged along one of our consultants and are hopeful that the proximity will be good for building stronger relationships between the CF Trust and our clinical team. It was great to see the place where so much work is being done to improve the lives of people affected by CF. 

At the Cystic Fibrosis Trust office

Speaking of the Cystic Fibrosis Trust, we are very excited that next week they will have an amazing new Information Officer working for them in the form of Juliette! Once she's actually started I'm sure she'll write a post about it but she has already attended her team's away day and came back very impressed with the work and dedication of the team that she will soon be a part of.

During the meeting that we attended, two doctors from the Cystic Fibrosis Foundation in America, Drs Campbell and Skach gave a short presentation on the type of research and developments that were happening on the other side of the pond and it was very exciting to hear about the mind-blowingly advanced work that scientists are doing to examine and hopefully address the cellualar and genetic problems of CF.

Around the same time I was fortunate enough to attend an event at Imperial College London where Professor Eric Alton presented the initial results of the current phase of the Gene Therapy Trials that I have mentioned a few times in this blog. We were all sworn to secrecy because the results had yet to be published in the Lancet. (It has now been and you can read the report here if you are into that sort of thing:  Gene Therapy Phase 2b)

Professor Alton did an incredible job of explaining really quite complicated information to the assembled audience of around 80 people who were predominantly parents of children with CF. The event was streamed on the internet for those who couldn't attend and Juliette was at home watching on the laptop. 

Juliette's view of the presentation (note the essential crochet supplies in the background)

The results showed a modest but significant improvement in lung function for those who had the gene therapy compared to the placebo group. There is still a long way to go before we will see any of this being available and there are further trails and the whole circus of pharmaceutical development and funding and approval before then but I really am very hopeful that we are on the way to a life-changing breakthrough in this area before too long.