Back in the UK

So what's happened since I've been back?
I've given a presentation on my trip, sent loads of emails and tried to get back into the work I'm paid for. "A" had a great week away at an adventure camp and were looking to do tours of local secondary schools to make a choice for next year.
I was horrified to realise I'd forgotten A's follow-up appointment with his paediatrician. My main job always must be father, husband, wage earner and then PLE investigator.
Having said all that there's some really positive stuff coming through. While I was in America a Statistician studying one of A's drugs literally introduced himself to my mum. They were at the same music event between Glencoe and Oban. He lives about 20 miles from me (South East England) and works for the same drug company as a friend of mine!
The story has only really started!

Coloring Books In Buffalo

Waiting to board the last flight of the trip, drinking my last Starbucks (decaf I'm hoping to sleep on the plane) .


Buffalo was home to a little boy called Colin Colson who would have been 14 had he not died from PLE in 1998. I met the Colson family: Colin's Mum, Dad, Grandmother and Aunt who along with his Grandfather founded the Children's Heart Fun to fight PLE. This small charity organised the first international symposium on the condition and personally invited researchers who had shown and interest in the condition. We talked about plans, hopes and the things I had learned on my trip.

I thanked them all individually as both Jack Rychik and Hudson Freeze had pointed to this symposium as the event that got them interested in the condition. I know that their work directly led to the next generation of anti-ple drugs being available just before A needed them.

Colin's Grandmother showed me her late husband's office from where he planned the scientific program for the symposium. He was an Organic Chemist who retrained himself as an expert on PLE She wanted to show me the books he'd used to familiarise himself with medical terminology: The Anatomy and Physiology Coloring Books. (Amazon Link) They weren't on his shelf but it didn't matter, I used the same books to illustrate my presentation in San Diego.

Slide from my San Diego Presentation adapted
from "The Anatomy Coloring Book"

My Culture has no adequate way of thanking someone no longer with us.

James Colson, Thank you.

I know I'll be back in touch with the Colson family soon; partly because I had to dash to the airport while we were still talking about how best to work together and partly because I think I've left my receipts for the trip in the back of Tom Colson's car!



 Note: I wrote the above in pen in my notebook and am now posting safely at home.

It went well.

The trip to the Sanford-Burnham institute will take some time for me to digest but it was everything I could hope for. There were sceptical voices about my idea of using an enzyme we know is depleted in PLE as a therapy;  I think I was the main one of those voices! Luis Millan who is the world expert on this enzyme was very positive. He said that a Dutch company had been through early trials of the substance as a treatment for Inflammatory Bowel Disease. He thought they might be very interested on working on Protein Losing Enteropathy and is going to put me in touch.

He told me the story about how a patient with a very rare condition had contacted him, there was an international conference of the few people who new about it and within 6 years there was a therapy which a drug company were selling.

There were other explanations put forward for why the results might not signify anything particularly important but also ideas to test the data.

Hudson Freeze was so positive, friendly and welcoming. After we had talked for most of the afternoon we drove around San Diego in his Mazda Convertible talking about education of Children whose first language is not English (H's Masters interest). We drank Miso soup at a sushi bar in honour of A.

I miss my family.

Must go. Breakfast and then a drive to the Airport for Buffalo.

I am loving San Diego.

Didn't sleep much again and couldn't concentrate on going over my presentation so I walked down to the ocean and went for run along the sand. Pelicans, humming birds, surfers and someone snorkeling in the harbour being investigated by about 5 curious seals.  I dipped my hand in the Pacific and tasted the salt and looked across a thousand miles of water.

La Jolla (Pronounced La Hoyla) San Diego
Thanks to Russ and Ev for the pronunciation

I came back to the hotel and got a Facebook message to say that a colleague who had been ill for a number of years had died at the weekend. We had a lot good chats about science fiction and the meaning of life. He will be missed.

P.S.

For a more cultured title than the quote from "Madagascar" I  thought of this from "Snow" by Louis MacNeice

World is crazier and more of it than we think,
Incorrigibly plural. I peel and portion
A tangerine and spit the pips and feel 
The drunkenness of things being various.

Two hours talking to the world number 1.

This will be a quick post because I've got to get a cab in 40 minutes to get to the airport to go to San diego. Just to let you all know the meeting with Jack Rychik went really well. It was great to be able to talk to someone who knows more about PLE that anyone else in the world and talked about his passion for helping these kids. There wasn't anything I'd thought about that he hadn't also considered.

I'll write more when I'm not in a rush but the main thing is he's interested in the idea of an international convention leading to an international collaboration. He went straight from our meeting to talk to  a charity about funding a specialist clinic for Fontan children. I must make sure that the UK links in to this.

Thanks for all your thoughts I feel your support. Travelling another 3 hours behind and presenting tomorrow, wish me (more) luck.

P.S. in Starbucks again. The student opposite has a T-shirt saying "What would Jean Valjean do?" I think it's a question we should all ask ourselves!

Circa Survive

I’m writing this in a very ordinary Travelodge room in Philadelphia with my phone telling me it’s 9:20am the clock on my laptop telling me 2:20pm and my body telling me I’m on another planet entirely.

The plane journey was good, didn’t feel like 8 hours. I sat next to Scott who had been touring with a band called "Circa Survive" and was coming home after a 6 week tour including King Tut’s in Glasgow. I talked about the trip, worked on my presentation watched “Avatar” and decided against watching “Percy Jackson and the Olympians”. My son, A, has just started reading the book and I thought I’d like to watch the film with him. I gave Scott the blog address.

Standing up to leave the plane the woman sitting directly behind me for the whole flight said “I couldn’t help overhearing your conversation. Are you a research scientist?”

She introduced herself as an Immunology graduate just back from a conference in Croatia. I talked about Protein Losing Enteropathy as a complication of Cardiac Surgery. She had a friend who had just had a baby with Hypoplastic Right Heart Syndrome. A’s condition is a variant of Hypoplastic Left Heart Syndrome, though to be honest I don’t know how similar the conditions are. We must have talked for two minutes before she went through USA citizen immigration and I queued for visitors!

If I’m going to be honest I’m a bit down this morning; I’m hoping this is not a picture of the whole trip (no offence Scott!). I’ll have a nice chat “about survivorship” with Dr Rychik but have no way of knowing if in the next office is someone else who would be interested, knowledgeable and motivated to work on this. I guess I should print some business cards today!

P.S. Ate in Chinatown last night. The TV was playing a Chinese Language channel with someone singing a song that sounded for all the world like “The Laughing Policeman” in Cantonese. It’s a strange old world out there!

P.P.S. Now posting this from Starbucks on the corner of 6th and Walnut, Philadelphia, PA and feeling much more positive. God bless Wi-Fi Caffeine and the US of A.

Leaving on a Jet Plane.

I'm in the shuttle bus to going to Heathrow. I managed to find "Purple Parking" even though my GPS tried to take me down a closed. Nice man in Southall Tesco garage beats satelite technolgy! I've not been away from H for this long since I got married and am going to miss her and the kids.

E (age 5) said "good luck being awake when its day and asleep when it's night". She'd finshed our conversation about time zones by saying "Dad, you're confusing yourself".

Dreamed about walking through Philadelphia last night thinking "Shouldn't I have some luggage with me?". Hope something comes of all this.

Poker Face

My son is doing a powerpoint presentation for school tomorrow. He wanted to take it in on a usb stick and, digging around in a drawer, I found one I got as a birthday present (thanks Jane). I'm now really tempted to take my presentation to "the research casino" on a poker chip. Why I'm spending time thinking about this rather than finishing the thing I Don't know!

Buffalo.

Last leg of the trip will be to Buffalo meet Tom Colson a dad who sadly lost his son to PLE. He runs a charity which provided initial funding to the San Diego group. He and his father also organised the first international conferences on PLE. I want to talk about how they managed to do that and whether it's something I could help with.
I'm going to be within 200miles of my university friend but can't see how to meet him this time.

Casino or Cathedral.

So what's the point of this trip? Well the email I wrote to the Hospital Physicists' Association said "...to increase collaboration between UK and US research groups and look at organising an international conference" and that's true. Having pondered this for a few months I've worked out two other motivating drives.

One is, the one in a million chance, that I've thought of a treatment for PLE.

After Philadelphia I'm traveling to the Burnham Institute in San Diego. They have been awarded a large grant to study PLE and I've been in touch with them since my son was diagnosed three years ago. I'm giving a presentation discussing the links between a couple of scientific papers I've read. One (wildly optimistic) reading suggests a simple well known compound as a therapy for PLE.  So one reason to go is that the Burnham Insitute may be the"Research Casino" that will take my bet on this being something that might treat my son.

Another motivation is that the trip is a pilgrimage to give thanks for the work that has so far kept my son healthy.

I'm finding that, as the journey becomes more real, connections become more visible. I have a university friend in America who also has a son with a heart condition and lots of contacts in US research groups. I could have got in touch at any time but we spoke on the phone last night for the first time in 15 years!

One week tomorrow!

Streets of Philadelphia

Isn't the web wonderful? I can use google streetview to look at the Childrens' Hospital of Philadelphia I'm traveling to next week.

They're going to talk to me about their "Single Ventricle Survivorship" programme. Single ventricle relates to my son's, surgically created, two chamber heart; survivorship is not a word I've come across before but it sounds positive!

Must book  hotel or I'll end up sleeping on the streets of Philadelphia.


Edited to add:

OK done that, phew.

My dad phoned to say he'd heard about the blog from Auntie in Edinburgh who had heard about it from my cousin in Vietnam!

Hi Hazel.

Isn't the web wonderful. Night All.

Test from mobile.

I think I'm going to need more than this!

12 Days and Counting

Just over a week till I catch a plane to Philadelphia. It still feels like I'm living in a fantasy but I'm committed now (and so is my credit card).

Hello dear blog readers. I'm a parent of a 10 year old boy with Protein Losing Enteropathy (PLE) following the Fontan operation. I can't explain what all that means in my first post but it's bound to come up again later on given the blog title.

I've managed to get a small grant and some money from Parents and In-laws to travel to USA  to meet expert researchers and clinicians to talk about the future of research and care in this disease. I've had the money for the best part of a year but the trip has really only come together in the last month or so.

I'm starting this blog to record what happens on the trip, partly as it's going to be cheaper than mobile phone calls home and partly to see what happens.