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Tuesday, June 15, 2010

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


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

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, 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


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Monday, June 14, 2010

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 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'


The Inglis' American Road Trip


Way back during our first few days at the Ronald McDonald House, we met a lovely American family. Their son is a few months older than Jamie and their daughter is 7. Their daughter was having treatment at CHOP [nothing to do with cancer] and we met up with them again during their follow up visit to CHOP. We decided it would be nice to meet outside of the hospital environment and so with the beautiful weather and Jamie's break in treatment, the timing was perfect for us to get together on Saturday at a theme park!

Our roadtrip started last Friday, so we quickly booked a place to stay, packed the car [again], we checked and double checked that we had all medication and supplies for line flushing and dressing changes and... headed towards the mountains of Pennsylvania. It took about 4 hours as there were roadworks towards the end of the journey. The scenery was beautiful until we hit the traffic jam. As we slowed down, Jamie could see things flying around and asked what they were. John and I said "O'h, probably supersized flies!!" The supersized flies suddenly seemed to multiply and as we came to a halt, the massive truck alongside us was a bee truck with some very angry bees escaping and swarming all around! Of course, we seemed to be stuck alongside this truck for ages and it was just horrible. The photos we took are not that clear but these bees were everywhere!

Our friend, Michelle, called us on the cell phone to make sure that we were still coming and her children were so excited! Jamie spoke with them on the phone and asked if they were going to the fun park with him!

On arriving in Danville [your destination is on the right!!] we couldn't find the place we were staying in. The Sat Nav kept taking us to the river!!! Telephoned the Inn and they gave us better directions! Jamie and Poppy had been so amazing in the car but they needed fresh air!

By the time we were settled and ready for a walk into the small town, daylight was already fading. The sunsets here in USA are beautiful but very quick!!! Jamie enjoyed the guns in the Memorial Park and playing hide and seek whilst I was listening to an American Amateur Dramatic group rehearsing some Shakespeare in the Park at dusk! Jamie was happy to see all the fireflies again and on our return to the Inn [which was just in front of the biggest hospitals in that region!] we thought we would have a meal at the restaurant. We sat outside and Jamie was a star! At first Jamie was not tempted by anything on the menu and decided that he wouldn't have anything. He sat and thought and said "I have an idea, how about I have pasta with cheese melted all over it?" Great plan but not on the menu. We asked and they provided Jamie with a huge plateful of spaghetti and melted Mozarella! He was so thrilled and just said "Wow" with a shriek when he saw it! He told the waitress "It's the best pasta I have ever had!"

I know that we recount Jamie's eating habits as though it is the most important thing but truly it is!!! To see the joy on his face at having something that he has finally managed to decide to eat and enjoy is just wonderful. He ate what he could and we boxed up the rest for him to enjoy for breakfast!!! Mummy and Daddy's meal was great too, as was the wine and the fact that Poppy slept throughout the whole meal! This was one of the best evenings in a long time!

Saturday morning was very hot and sunny - after the effects of the air con in the rooms, walking outside was like walking into an oven. I did panick a bit at the fact that we were all going to be out in the heat all day. When Jamie is on Accutane, he is not to be exposed to direct sunlight but we knew there was going to be lots of trees and shade in the theme park.

Jamie's morning had started as per usual...digging his heels in about taking the Accutane, getting very cross about something which he wouldn't tell us why or what it was about. Constant distraction techniques so as to delay the Accutane. The distraction techniques were based around him eating "After I have finished my pasta then I'll have more pasta before my accutane!!" If we didn't have plans and had 2 hours to spare then this would have been an option. Still, I really do not want to use food in our battles as his appetite is getting so much better! Luckily, Michelle and her family had been held up in traffic so we had golden minutes to get the medicine in before we could enjoy the rest of the day!

Their knock on our door was a surprise for Jamie, he didn't know where we were actually meeting and his smile as the 2 children came in and greeted us was lovely! Michelle showed me her wedding album, they were married last year, at the place we were staying in. Once all the 'mwoahs' were out of the way and gift of strawberries put in our fridge, we set off!!!!

What a wonderful place the theme park was. Nestled in between the hills with loads of shade and trees!!! No entry or parking fees and the rides were 75c each. Bigger rides were approx $1.50. Jamie loved the Mad Hatters Tea Cups and I have to say, they were pretty fast for a Tea Cup ride! I think Jamie went on these 3 times!! It all got a bit much for Jamie as he was too excited to have a sleep so poor Maria and Steven [the familes 2 children] ended up doing what Jamie wanted to go on. They were so understanding as were their parents!

We left the park at 7.30pm, totally worn out and hot!!! We couldn't believe how after our short ride back to the Inn, with Jamie sleeping, he suddenly had loads of energy in the evening!

I know that Michelle will be reading this so thank you once again for a wonderful time and yes, when we go back, we'll meet again!!

On Sunday we moved on to another town to visit a family who had helped us through the Travis Manion Foundation. This I will save for another blog update as out of respect they need a piece dedicated to them. Their son, a Sgt in the US Army [a medic in the 82nd Airborne] was killed in action in Iraq, in 2004. What they have done and continue to do is inspirational.

Today, it is raining but we are all enjoying just being together. Jamie, who is coming to the end of this 2nd cycle of Accutane, is having less and less of the mood swings and is chirpy, cheeky and happy!!! We think he is putting on weight as 2 pairs of trousers now stay up on their own! He is so proud of this!! His appetite continues to improve and he does things to the extreme! It's a bit like the famous book by Eric Carle 'The Very Hungry Caterpillar!!! On Tuesday he munched his way through 4 bowls of strawberries and cream and on Wednesday morning for breakfast he ate almost 4 whole oranges [well sucked the juice out of them!!] I know that we are encouraging him with the oranges to help with absorption of food but rather over the top, don't you think?! We took a photo as evidence as we found this amusing!!!

We do read any comments that are left on here so please feel free to leave messages for Jamie or comments. Once I've changed my password [forgotten it again!] I will acknowledge any comments!!! We would love to hear from our friends in the German Community who are still following Jamie's appeal.

The fundraising is continuing. We have just learned that a lady called Michelle Leonard, won a competiton on TV and has donated her winnings of €5,000 [euro's] to Jamie's appeal!!!!! Michelle, wherever you are and if you are reading this, a MASSIVE THANK YOU from us all in Philadelphia!!

Bye for now!!

Love from us all in wet, miserable Philadelphia!!