"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!!

Cycle 3 of Antibody Treatment [ch14.18]

Wow! Cycle 3 is over and this blog might be quite short because there is nothing to say other than, Jamie coped so well, the best one yet...no pain, no cough...nothing!!!!!!!! In between his Benadryl sleeps he would be up and about playing. We still can't believe it!!! Only 2 more rounds to go! He just amazes us, seriously!

So here is a little review of our week!!

Admission on Wednesday went smoothly, no lengthy waits for a room and blood counts were good. Jamie was charming everyone as per usual, telling everyone that he loved them! All the staff laughed when he hugged me tightly and said "I love you so much mummy that I could gobble you up!!"

We spoke with the Psychologist about the workshop for Challenging Behaviour and it had to be postponed because only 2 families had come forward for it! We are hoping it will start next week. 

Our room this time was a little on the small side and in a different wing of the unit, a bit isolated really but to cheer ourselves up we set about the familiar task of making the room our own. Each admission we do slightly different things and this time round Jamie really wanted 'Spiderman' included. We tried with our limited resources!

Here we are having just arrived in the room - we need a makeover!

The flowers were returned to us from the

'Wishing Garden from the ALSF event

Even his door gets a makeover!

Treatment started and we were so nervous but the only issue Jamie had on the first day was an  increased heart rate. The Doctor was a little concerned but as Jamie was just an hour away from finishing the infusion, they just kept a watchful eye over him.

So that was it, the next 3 days were uneventful! Jamie got on with the job in hand and slept when he needed to, played when he needed to and eventually pooed when he needed to [days of being a bit stuck up there required his magic drops which loosen things very quickly!!]

The following set of photos show the remarkable Jamie playing whilst having antibodies going in!!!

                                             

                                                       

Decorating himself with a dry wipe pen. Came off very easily!!

Jamie also wanted to make a Spiderman mask, so here he is with Brittany, his Child Life Specialist. She is so lovely and is so good with Jamie and Poppy...

Just chillin!

The next few weeks are very hectic with hospital appointments with the dreaded disease re evaluation. This means that Jamie is at the mid point and will have all the scans done again to see if the cancer has come back. This will never get any easier and each time it is an anxious wait for results.

On Saturday we are attending a Childhood Cancer Symposium in Philadelphia which has been organised by Alex's Lemonade Stand. Lots of different sessions about dealing with cancer, survivorship and issues with this, nutrition and new treatments and trials.

Granny Inglis flies out from Scotland today. It's been a tough year for her too with other family events - not just Jamie's illness, so it will be lovely for her to see Jamie and Poppy and enjoy the hot weather!

2 weeks ago, Maj Lacey,  based at the Naval Station in Willow Grove, helped us in acquiring a mattress for the spare bedroom and some small pieces of furniture to finish furnishing the guest room. The Mess had a collection for us and also presented us with 2 gift cards to be used in the grocery stores! It was very unexpected and very kind...thank you!

Poppy is doing well, crawling and moving in every fashion possible but we just don't understand this crawling forwards business and so she gets herself stuck in the most awkward places! One of the children in the RM House who also has NB really likes Poppy's name and has called her the 'flower baby!' This has reminded me of our friend's daughter [the family we went to the theme park with] who on that day said to me "Miss Vicky [sooooo polite!] Poppy's eyes are like blueberries!"   Beautiful!!

Here is our flower baby with eyes like blueberries

Goodnight!

XXXX

Alex's 'Original' Lemonade Stand ~ 10th Anniversary Event at Penn Wynne Elementary School

'FIGHTING CHILDHOOD CANCER, ONE CUP AT A TIME' [ALSF]

http://www.alexslemonade.org/

We dedicate this blog entry to Alex, her parents and her legacy, that there will one day be a cure for all children with cancer... and to all those children who are currently fighting cancer, have earned their angel wings or have battled and won

Alexandra "Alex" Scott

January 18th, 1996 - August 1, 2004

Those of you who have been following the blog will know that we keep mentioning this Foundation as they have helped us so much. Now you will learn the truly amazing, emotional story behind this Foundation and it's achievements. I may repeat some information from previous blog entries but I want to start from how we were first made aware of ALSF. I will try to be brief but when I start writing, I find it difficult to stop! Where appropriate I will also reference text taken or paraphrased from ALSF literature etc...

Way back in March 2010, [yes it really is that long ago!] we arrived in Philadelphia at CHOP. Almost immediately, people we were introduced to in those early days told us of 'Alex's Lemonade Stand.' In the hospital, the awareness was all around, staff wearing t-shirts, children wearing wrist bands etc...


The day hospital where transfusions take place is also named 'The Alex Scott Day Hospital.' On meeting with our Social Worker and Neuroblastoma Nurse Practitioner, we were quickly aware that some roles within the onco unit are as a direct result of funding from ALSF and that this was a big non profit organisation. We needed help of the 4 wheeled type and could not afford to hire out a car for 6 months. We were advised to approach the ALSF whose main sponsor in the beginning was VOLVO cars. This partnership meant that we were able to have a lease car with Volvo at no cost, other than insurance which we paid for ourselves. We know that other families have also made use of this.




A few weeks later at the Ronald MacDonald House, volunteers from ALSF came to cook for all the families. By pure chance, I was packing up items from our kitchen locker as Jamie had completed radiotherapy and we were moving out that day. I needed an extra bag or two and went up to one of the volunteers. She immediately recognised the accent and said "Are you the English family that we have just helped with the car?" Obviously we were 'that' family and she introduced us to Alex's father, Jay Scott. We thanked him for their help and he explained how his family had indeed stayed at the RM House some years prior.



How Alex's Lemonade Stand Developed

Jay's daughter, Alex, fought Neuroblastoma for most of her short childhood and for much of her treatment, was a patient of the Children's Hospital of Philadelphia. Her wish was to find a cure for all children with childhood cancer. This at 4 years old...what an amazing, selfless thing to think of and wish for!

The following extract has been taken directly from her website

'In the year 2000, the day after her fourth birthday, Alex received a stem cell transplant and informed her mother, "when I get out of the hospital I want to have a lemonade stand." She said she wanted to give the money to doctors to allow them to "help other kids, like they helped me." True to her word, she held her first lemonade stand later that year and raised an amazing $2,000 for "her hospital."

While bravely battling her own cancer, Alex continued to hold yearly lemonade stands in her front yard to benefit childhood cancer research. News spread of the remarkable sick child dedicated to helping other sick children. People from all over the world, moved by her story, held their own lemonade stands and donated the proceeds to Alex and her cause.

In 2004 when Alex passed away at the age of eight—her stand and inspiration had raised over $1 million towards finding a cure for the disease that took her life. Alex’s Lemonade Stand Foundation was started by her parents in 2005 to continue the work that Alex began. Our mission is simple: to raise money for and awareness of childhood cancer causes—especially research into new treatments and cures—and to encourage and educate others, especially children, to get involved and make a difference for children with cancer.

Since Alex set up her first lemonade stand in 2000—truly exemplifying the saying “When life hands you lemons, make lemonade”—we have raised more than $30 million, with more than $12 million of those dollars coming from lemonade stands. That money has helped to:
• Fund more than 150 cutting-edge research projects


• Create a travel program to help support families of children receiving treatment


• Develop resources to help people everywhere touched by childhood cancer'

Please visit their website www.alexslemonade.org


On their website you can watch a wonderful video of Alex which also includes footage from CHOP and interviews with Jamie's oncologist, Dr. Maris. Click on the link 'About us' then click on thumbnail 'About'. On that page if you scroll down, you will find the 'youtube' video.



So this year marks the 10th Anniversary since Alex set up her first lemonade stand in her front yard and each year the 'Original' stand takes place at the Elementary School that Alex attended.

Jamie and Poppy did handprints for the 'Wishing Garden' during Jamie's first round of antibodies. The Child Life Specialist explained that their photographs and handprints would be made into paper flowers for the ALSF event.

                                    

On Saturday 12th June 2010 we attended the event and I think the following words encapsulate the day ...fun, emotional, inspiring and HOT!

Whilst driving to the event we saw Lemonade Stands at roadsides with people collecting donations. Jamie was thrilled to see his first stand!

The fun began in the car park, a short distance from the school. Our transport to the school was on a boat with wheels!

It had a real party feel to it with music and volunteers acting as guides and giving us a brief account of ALSF and the neighbourhood that Alex lived in.

When we arrived we were greeted at the 'Welcome Booth' by a lovely lady called Shirley who has been following Jamie's blog! They had a special gift bag for Jamie and Poppy with T shirts, bandanas, wrist bands, pencils etc... THANK YOU!

The first thing we did was go and get some lemonade as it was so hot. Jamie enjoyed the many activities, especially the bouncy castle and having his face painted as Spiderman!

Emotionally this event gave us all time to reflect on our own experiences with cancer whilst at the same time being in complete awe of Alex and her legacy. Ultimately it was the chance for cancer heroes such as Jamie to stand up and be proud of what they have gone through and achieved. For Jamie, his fight with Neuroblastoma is not over just yet but my goodness, he is edging closer and closer to completion of treatment!

Emotions were high as Alex's parents, Liz and Jay took to the stand and spoke about their daughter. As soon as her voice wobbled that was me gone! [Gulp, deep breath and another sip of lemonade.]

I saw the next 10 minutes in a blur. Over the PA system all the cancer heroes were called to the stage. Seeing my Jamie up there with his Daddy was the first time I had 'accepted' that Jamie was part of a group that you can't imagine ever having to face albeit a very special group who have earned their place on that stage. Seeing these children also made me angry...why on earth do these children and families have to go through this awful journey? For some they have come through to the other side and that should be celebrated.

Time for the Butterfly release as butterflies and wishes are synonymous with Alex's 'Original' Lemonade Stand. This extract is taken from the ALSF programme, by Liz and Jay Scott

'The butterfly release reminds us of the beautiful spirit of all children with cancer and also brings alive an ancient Native American Legend. Legend reveals if anyone desires a wish to come true, they must capture a butterfly and whisper that wish to it. Since butterflies make no sound, they can't tell that wish to anyone but instead the butterflies carry that wish on their wings. So by making the wish and releasing the butterfly, it will be taken on the butterfly's wings to the heavens and be granted.'

A beautiful piece of music was played over the PA system as the children released the butterflies. By now the floodgates were well and truly opened and tears rolled down my face as Jamie let his butterfly go. It's easy to guess our wish.

Gulp, another sip gone and cup is now empty...but we keep filling it up and keep fighting!

We also met some wonderful families and NB survivors. We will see them again in 2 weeks time at the Children's Cancer Symposium but to end the day, Jamie was running around, full of energy then said to me "I'm glad Alex did a Lemonade Stand because I have had a good time!"

On seeing Alex's father, we had to tell him this! When we got home, Jamie also explained that he wants to do a stand to be a kind boy and let other children have fun. I took a huge gulp then!!

In the bath that evening, Jamie and I were role playing with the squirty toys. This is his time where he often talks about what is happening or has happened to him by taking on the persona of a turtle, crab or octopus. Tonight it was the turn of Mr Turtle! Our conversation went like this:

Turtle [Jamie!] : "I've been having treatment."
Mummy:    "Have you, what is that for then?"
Turtle:         "I've got cancer." We have never mentioned this to him before just the name of it!
Mummy:      "O'h, I'm sorry Mr Turtle, what have you had done?"
Turtle:           "I've had chemo in Germany and now I go to CHOP. Some children have blastomas in the head, their eyes or their tummy. Some of them get better but I'm not.
Mummy:        "Of course you are getting better!"
Turtle:             [laughs] "O'h yes, I forgot, I'm having antibodies and they eat baby blastoma cells."

We ended this bath time with Jamie having his hair washed for the first time since losing it all last April. Just your average bath time then really! We were mentally exhausted by this point!!!!



Sunday 13th June 2010

We were watching CBS 3 News and there was a whole programme dedicated to ALSF and I am proud to say that Jamie and myself were also featured with scenes from CHOP talking to the staff!!!

WHAT A WEEKEND... now we get ready for admission on Weds for round 3 of antibodies.

Jamie looks great and is so happy at the moment. He really is full of life and ummm, well also full of oranges [not lemons!]. This photo was taken at breakfast one morning after a mammoth orange sucking session. I know we have been encouraging him to eat lots of food with Vit C to aid absorbtion but I think you'll agree that this is a bit over the top Jamie!!!!

 

GO JAMIE - we love you so much. Lets hope that round 3 is not as traumatic as the last one!

Jamie had clinic today and everything is good ~ he just needs to keep up with the hydration but there was me thinking that he was actually drinking quite a lot. O'h well, nothing is going to be perfect is it? We travel into Philli again tomorrow to get settled into the RM House before Jamie's admission on Wednesday. Now that I have figured out how to enter my own blog [this being my first attempt!] I will update over the next few days as treatment gets under way.

Huge thanks to Danni and Tristin Hurst who have done an amazing job entering my often lengthy updates!!!

Oops have just remembered that I agreed to submit another article for the JHQ Bulletin! There is a deadline for this one!! Best go!!!

As always thanks for reading!!!

Vicky and co
XXXXXX















--------------------------------------------------------------------------------

Hotmail: Powerful Free email with security by Microsoft. Get it now.

American Road Trip Part 2

After a good sleep we packed our things up and moved on. Today we were visiting a very special family. Bob and Annette Sandri were introduced to us via Maj Matt Grieser who was based in HQ ARRC, Rheindahlen. He basically made all of our links here with the US Army, possible and contacted Bob Sandri before we arrived in Philadelphia. I say that the Sandri family are special because they have had to face the toughest challenge ~ their son, Matthew Sandri, a Sgt in the US Army [a medic in the 82nd Airborne] was killed in action in Iraq, in 2004.

Bob, Annette and Lydia Sandri [with my mad lot!!!]

We can't begin to imagine what they have been through over the past 6 years and they were so welcoming to us insisting that we stay the night with them. During our time with them Bob would talk to us about the events leading up to their son's death, the medics who were with Matt when the explosion happened and how he had courageously protected his fellow comrade by diving onto him. His comrade survived all of this and even made a surprise call to the Sandri family. Bob told us that they weren't expecting the visit and that the poor soldier had spent the night in his car, outside of the Sandri's home as he had lost his nerve! I think he knocked on their door at lunchtime the following day!

Bob and Annette spoke very movingly and openly about their son and at the time of all of this, their youngest daughter Lydia, was only 8 years old. Lydia, wrote to the then US President, George Bush and the whole family were invited to Washington to meet Mr. Bush in the White House!!!!!! The photographs of their meeting were wonderful and they said that Mr and Mrs Bush were great. Good on Lydia!

In honour of their son, the 82nd Airborne Division, developed an interactive medical training centre for US Soldiers with state of the art facilities. The Sandri family have been heavily involved in this as they keep very close links with the 82nd Airborne Div and have attended ceremonies and demonstrations of the facilities. We saw some of the photographs of the centre. It is amazing and could be a benchmark for future training. They even have a dummy soldier who can be controlled from the control room to present with complicated symptoms which can be altered at any time whilst medics are dealing with a particular scenario.

Poppy and Jamie loved it in their house ~ a traditional 3 storey house with a beautiful veranda and swing. Poppy even fell asleep on Annette whilst on the swing!

There were loads of toys for Jamie to play with and we can't forget to mention, Jack the dog!! Even dogs are supersize over here! We are dog lovers and sadly on health advise had to re-home our beloved dog last year. We still find this very difficult as Barney was with us from 11 weeks old. Jamie adored him and still talks about Barney and when are we going to get another dog? So Jamie and Jack became friends but Jack's friendly advances towards Poppy were not so well received at times!! She enjoyed the chase of stroking him and pulling his hair and was content with him lying next to her!!

We had a lovely meal with Bob, Annette and Lydia [their other son, Blake was away at West Point on a pre-selection course] and then went for a walk around the town, stopping off for ice creams and visiting the various monuments dedicated to fallen heroes from wars past and present. Very sad to see their son's name here too.

Jamie ate 6 eggs at their house and the next morning he wanted eggs again!!!

Here is Jack...is he supposed to be on guard?!!

John went to visit Matt Sandri's grave with Annette before we left.

Poppy and Lydia

So that marked the end of our American Roadtrip!! Thank you for your hospitality!

We all had a wonderful few days away and hope to meet up with both families again in the near future.

No hospital appointments for the rest of the week but still on Accutane. Jamie is amazingly well and I am pleased to say has coped well with the side effcets of the Accutane.

We have a Charity event to attend at the weekend. Alex's Lemonade Stand are celebrating 10 years since the original stand was set up. The open day is on Saturday and I am sure there will be lots to write about!!!

Bye for now!!

The Inglis'

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX