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Tuesday, July 6, 2010

"And the Winner [so far] is..."

What an anxious week, firstly we said "Goodbye" to Granny Inglis who enjoyed her time with us and then 2 days at CHOP for the all important scans. We took the train on both occassions as it's a nail biting drive into the city and with our stress levels already heightened, we thought this would be a better idea.

Whilst keeping up to date with England's fantastic efforts in the World Cup[!!!!] the only results we have been interested in are Jamie's disease re evaluation. 3 scans were performed: MIBG, CT scan and Bone Marrow aspirates.

Jamie coped well with the aneasthesia and we were reunited with our staff from radiology who had the pleasure of our company for 2 weeks every morning way back in March. They and us were so pleased to see each other. Robyn [one of the recovery nurses] even brought Jamie a chocolate pudding desert for when he woke up! We have this running joke with her as Jamie  would ask Robyn for food each time he awoke from anaesthesia! He thinks that she cooks the food to order!!!

So, the MIBG scan is designed to show any hotspots, ie any NB cells that are big enough to be detected. We received the phone call whilst waiting on the platform for the train home for the first result, MIBG scan.

MIBG scan = CLEAR!

48 hours later we received the final results;

CT Scan = CLEAR!

Bone Marrow Aspirates = CLEAR!

It's been 6 months since Jamie finished  dose chemo and received his stem cell transplantation. In many cases, children relapse within this short time.

JAMIE IS STILL CLEAR FROM CANCER, 6 months later! Jamie is thrilled as he truly understands what this means. He is a very bright boy who knows far too much about cancer, more so than you or I.

Of course he is by no means cured but this is the best news we can hope for!!! We will continue to hope and fight for as long as needed [probably the rest of our lives]. I often think back to the day of diagnosis and what a beautiful Spring day it was. I was 6 months pregnant, enjoying work and excited about the future. Little did I know how a couple of hours later this rollercoaster was about to start for Jamie and our little family. Along the way we have gained so many new friends and we know that people are following Jamie's progress and so it seems that our family has grown! We all share the same emotions as we hear and read about Jamie, just at different levels I suppose.

We have always said that our life is like a Soap Opera! Whilst out with John's mum, he took this picture which was rather fitting!!

Although Jamie and Poppy's Granny was only here for a week, we packed a lot in, amongst our hospital visits. In fact we spent a whole day at the hospital as Jamie had an ear infection so they kindly gave Jamie antibiotics through his broviac line which meant we didn't have to fight with extra medication on top of the Accutane!!

The surrounding countryside in Warminster is beautiful and in the evenings we get a free light show with all the fireflies! Granny enjoyed our walks and here are a couple of photos of us all just 5 minutes walk from our house!

Jamie was obviously not as interested in the deer as we were!!!!

I love this photo!

Saturday 26th June

You may recall from a previous blog entry the wonderful work that this Foundation does. A Childhood Cancer Symposium was organised by them at a hotel in the City. We travelled the day before so that Granny could see some of the historical sights.
The Liberty Bell

Jamie's history lesson. I teach on the go but poor kid can't escape his teacher!!!!

Poppy with her baby. This doll goes everywhere with us!!!

We all had fun on the 'ducks'

We relaxed in this street in the early evening

The Symposium was really useful. For the first time since I don't know when...both children were taken off our hands and entertained with lots of activities. This enabled us to focus fully on the presentations. One of the presentations about new trials and treatments focussed on the 14.18 antibody therapy so this was of particular interest to us!! We also learned this week form the NB conference in Denmark that there is now a lot more  talk about the treatment that Jamie is receiving. This is brilliant news and we really hope that one day soon, families can access this in Europe. Whilst we have good days out here and we try to make the best of our situation, it is a long time to be away from family and friends and without that support. Hey, we are getting towards the end now!!!!
We all found the Symposium interesting and enjoyable and Jamie and Poppy had  a wonderful day! Thank you to ALSF!

The following day, Sunday, we had been invited by Tina [Travis Manion Foundation] to the church that she attends as there was a concert and lunch afterwards. We were late in arriving as Jamie was being really difficult with his medicine and pushing us to the edge!! We saw the last 10 minutes of the concert, all about Hope and met and heard other families talk of their difficulties with serious childhood illnesses.

Most recently....
We have just celebrated Independence Day here with a jam packed weekend. We are aware that our time here is getting closer to the end so we want Jamie to experience as much as possible whilst he is well enough! On Friday evening, Jamie and I made Independence day cakes!

The end product!!!!!

Lindy and his family, who helped us when we first arrived, came over for a bar b que and it was great to catch up with them. They have had such an interesting life and it's always nice to hear their stories. They are so kind and their children are lovely.

So 4th July we met up with John's cousin and her husband. We all drove into the Country and they took us out for lunch. We are in the middle of a heatwave so it really was too hot!!! At one point it was 104 F!! The air conditioned restaurant was a huge relief! We travelled to a National park where their daughter was at camp, hoping to be able to meet her. Unfortunately we were just a bit late as the park was closed and help was limited from the Park Ranger!! We hope to go and visit before we leave so that their children can meet their extended family!! We saw some beautiful scenery and arrived back late at night and ended our day with a firework display in the garden. Poppy was transfixed by the sights and sounds and Jamie well, he's getting better. Those of you who have been with us to the JHQ firework display know that we end up coming home after 5 mins!!!!!

Jamie meets Spiderman Artist!

Yesterday, Tina, who helped us get furniture for the house, invited us to her house. Her house was gorgeous, set in 3 acres of land in the middle of the countryside. A pool and shooting range completed the house!! She called the night before and told me that she had arranged for us to visit some people that she knows that live 10 mins from her. Scott Hanna is the Inker for Marvel Comics who works on Spiderman, Iron Man and The Incredible Hulk!! Tina knew that Jamie is currently a fan of Spiderman and made a call for it to happen so that he could meet Scott and see his studio and do some drawing with him!!!!!!!! His wife [very nice lady] is also a fashion designer, well known in this area and has appeared on TV doing makeovers and has also taken part in Project Runway! They made us so welcome and we were there for over an hour and a half!

Jamie and Scott got down to business and both produced their own version of Spiderman. Bid for the best!!! We have some lovely memories to cherish of this visit and we have been given permission to share our photos with you all. They really were easy going and interesting to talk with. The artistic flair is an Inglis trait and Scott can see that Jamie already shows natural talent!

Jamie drew this eye shape by listening to Scott and copying his shape!

A huge thank you to Scott, his wife and to Tina who made this happen!!

Tina cooked us a wonderful meal and Jamie had a great day, meeting Scott Hanna and playing with Tina's children.

Back to reality now as tomorrow Jamie is admitted for cycle 4 out of 5 antibodies. This cycle is in 2 parts and is a repeat of the difficult cycle 2 where he ended up in Intensive Care. The first part is non eventful, it's when the IL2 and ch14.18 are combined that children experience the worst side effects. This combination starts a week Weds and tomorrow he is admitted for 4 days of IL2 on it's own.

We are bracing ourselves for a worrying time over the next 10 -12 days but Jamie is in very safe hands and we have complete confidence that any situation will be managed quickly and successfully. However, we won't be able to breathe properly until this cycle is over. Keep all of those positive vibes coming our way please as this is the most difficult part for Jamie. Once this cycle is over we are on the race to the finishing line!!!!!!!!!!!!!

Thank you for reading!!!
Love from us all in Philli!!