Monday, October 27th, 2008
Good news, Benny’s tumor remains unchanged! We were quietly confident that it would be OK because physically he has been doing so well but time is also ticking and we are starting to pass some major milestones which gives us a little anxiety. We haven’t received the official results from the radiologist but we were able to look at the scans with our doctor and it does look the same. We are very grateful, this summer has been fantastic and we are very thankful we will hopefully be able to enjoy our favorite time of year without worrying about treatments for Benny.
Last Saturday, October 18th was our 9 month anniversary since Benny was diagnosed. 9 months is the median survival time for children with this tumor, DIPG. We never imagined at the beginning of this year that he would be doing so well at this time. We celebrated this major milestone as a family at a wedding. Jillian Schwartz, the daughter of our dear friend and adopted grandmother, Linda, was married to Seth and all the kids were part of the bridal party. Bella and Lily were flower girls and Benny was the ring bearer. They were very cute, Benny did a great job and although we were a little nervous he did everything he was supposed to do even though he was a little bewildered as to why all these people were looking at him but not cheering him on or waving to him - he was told it was a party for him. The girls were great too, Bella was perfect and I think Lily gave up one rose petal from her basket.
Halloween is this Friday. Benny can’t remember exactly what trick’or’treating is but once he gets the concept of people giving him candy it will be hard to stop him. We don’t have a theme this year, last year we were the Wizard of Oz family and those were the last photos I have of Benny before his eye started to cross on November 8th 2007. This year we’ve raided our dress-up box and recycled a few old costumes, Bella will be Pippi Longstocking, Lily will be an astronaut and Benny is a purple dragon. I’ll post photos on the weekend.
Thank you to everyone for your positive thoughts and support, we are so grateful and thankful. It has been a tough summer for many other children battling this tumor, we’ve lost many beautiful children and many are struggling now. (www.ICouldBeYourChild.org)
Love Lisa.
Saturday October 18th, 2008
Benny's World Lemonade Stand tomorrow! The McGreevy family together with other families of the First Presbyterian Church of Lake Forest will be hosting a Benny's World Lemonade Stand at Elawa Farm in Lake Forest. It is being held in conjunction with the church's first Family Faith in Action event. The families are helping construct a new turtle pond at Elawa Farm. The Lemonade Stand will be open from 11am to 1pm, Sunday October 19th. Come and take a hike on the savannah, enjoy some lemonade and make the most of the beautiful fall day.
Love Lisa.
Sunday, October 12th, 2008
It's been another busy week here and I am yet to find the time to update photos but this week is looking a little quieter so I hope to have some photos for you all soon. Benny's MRI has been postponed from tomorrow till October 27th. The hospital called me on Friday with his scheduled time of 2:30pm. I can negotiate my way out of many hairy situations with Benny but even I know my limitations, I couldn't put him through a day of not eating until after 2:30pm. Thankfully he is not showing any symptoms so another two weeks of not knowing is actually a relief for us. If anything changes between now and then they will get us in earlier. I'll update more this week, (I hope.......) I need someone to invent a 36 hour day for me. Take care everyone, Lisa.
Saturday, October 1st 2008
Benny Rocked!
Our Benny Rocks event on Saturday, Sept 20th was a huge success. We had over 150 of our friends come out and support us. The band Not For Profit brought their own posse too, so over 300 people rocked it out for Benny’s World. This was an adult event but “Cardboard Benny” was there to greet everyone, photos will be posted tomorrow. The band was great, we had fun dancing and I enjoyed my moment on stage with the tambourine for Red Neck Woman. The band very kindly donated their door cover charge to us. We raised over $10k on the night thanks to ticket sales, the cover charge and donations from people who were unable to attend. We also received some wonderful media coverage in our local area which helped us raise awareness about Benny’s World and childhood cancer. We can’t thank everyone enough who were able to come and promoted this event to all their friends. As Brendan stated in his thank you speech, we may be a long way from home but the love and support we have received here in Lake Forest has been amazing and gives us the strength to keep fighting for Benny and all the other families who have to suffer as a result of cancer.
Earlier in the day on Sept 20th we also had a Lemonade Stand at the Lake Forest Rec. Center which was run by Bella’s fellow 2nd grade Brownies. It was one of our most successful Lemonade Stands to date. The Brownie girl’s sales techniques and enthusiasm were fantastic and my favorite line of theirs was, “do you need any change?” How could anyone resist, even when they handed over $20! We were also very fortunate to have two boys step in at different times to man the stand when the girls got tired or distracted practicing a dance move. Thanks Chase Bahr and Breck Nowik. With lemonade and snack sales, Benny Rocks ticket sales, t-shirts sales and donations they raised almost $1k. They also handed out and proudly wore their gold ribbons for Childhood Cancer Awareness Month. Thank you girls!
Yesterday was the last day of September and the last day of National Childhood Cancer Awareness Month. I had hoped to remind you why this was important at the beginning of the month but September was a little crazy. So as we enter October, which is National Breast Cancer Awareness month and you start to notice the multitude of events and media coverage for this very important month, pink will be everywhere, I hope you will also begin to wonder how we can keep people aware and fighting for Childhood Cancer. It’s not just about statistics, they are devastating, but all cancer statistics are. It’s not just about the diagnosis, the journey these children and families are forced on after diagnosis day is harrowing.
• Cancer is the No. 1 disease killer of children in the US. 12,500 children are diagnosed with cancer every year. One in 5 children will not survive. Cancer rates among children are increasing by 1% each year. An average of 70 years of life is lost per child (0-14 years) who is diagnosed with cancer. Imagine what one person can achieve in 70 years.
• Pediatric brain tumors are now the leading cause of death from childhood cancers.
• Cancer is the 2nd leading cause of death in the US after heart disease. An estimated 10.5 million people are living with a cancer diagnosis in the US. 222,700 of them are children (0-19 years).
• Childhood Cancer incidence rates are low compared to adult cancers but their impact on family and communities is far-reaching. How do you explain and make sense of why a child dies to siblings and other children? How do you explain to a child who is slowly losing control of their body why this is happening to them, that they will be OK? How does a parent ever recover from the loss of a child when every day they are reminded and left wondering “what would have been”?
• Survival rates of children with cancer have significantly increased but at a price. The impact of treatment on a child’s developing bodies can be very destructive. 3 out of 5 children will suffer from long-term or late side effects. Is that really a cure?
• For Benny’s tumor, DIPG, 250 children are diagnosed each year. Only 75 of those children will survive the first year after diagnosis, only 25 children will be left after two years. There have been no significant advances in treatment for DIPG in the last 30 years.
• Because pediatric cancers are considered rare as compared to adult cancers, the market potential for a new drug is very small, and very few drug companies actively seek clinical trials for childhood cancer drugs. Additionally, pharmaceutical companies do not test their drugs on pediatric cancers because they run a risk of failure with a drug that has been effective in the more lucrative adult market. Not only are we losing out on research specifically for childhood cancer but we have to use drugs developed for adult bodies on children.
• It is almost always through the cooperative group trial system that tests for safety or efficacy are done on children, and most children are treated on trials sponsored by the National Cancer Institute (NCI). Funding for the NCI has been declining in recent years. Cuts in NCI funding hurt those most in need of Federal funding because they are unlikely to find funding from other sources.
• The Children’s Oncology Group (COG), the world’s pre-eminent childhood cancer research organization, received 78% of its 2006 Budget from Federal Government grants. When funding is reduced it forces the COG to put new studies on hold and decrease enrollment in new clinical trials. Our children don’t have time; childhood cancers grow more rapidly than adult cancers because the cancer tissues grow together with the fast-growing tissues of the child.
There are lots of ways you can help fight for Childhood Cancer and they all don’t involve money. The most important thing you can do is be an ADVOCATE. We need to make sure everyone understands that Childhood Cancer is a major issue that impacts us all, we shouldn’t be scared or embarrassed about it because it seems too awful to imagine. Ways you can advocate for Childhood Cancer are:
1. Wear your gold ribbons, reminder bands, t-shirts etc., get the conversation started.
2. Support events that are raising awareness and funds for childhood cancers, there is always something big or little going on somewhere near you including Fun Runs/Marathons, shopping incentives, concerts, gala’s. Get involved and get people noticing.
3. Make sure Childhood Cancer is a national public policy priority. You can go to CureSearch.org and subscribe to their Action E-List so that you are notified whenever your help is needed to ensure your elected officials vote favorably for Childhood Cancer issues. You can also enter your zip code and see who your elected officials are and how they have voted on some important issues. With just one click you can send them an email or print out a letter.
http://www.curesearch.org/support_curesearch/raise_awareness/
Thanks for listening. Benny's next MRI is October 13th, he's been busy chasing squirrels and birds out of our yard and riding his tricycle.
Love Lisa.
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