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