Saturday, September 20th, 2008
Life has been a little crazy the last few weeks, I had hoped to be reminding you that September is Childhood Cancer Awareness Month and Sept 13th was Childhood Cancer Awareness Day but life happens I guess. The good news is that Benny continues to do great, thank goodness because the last few events could have tipped me over the edge but somehow still Brendan and I can laugh at the ridiculousness of life. 2008 has been a doozy!
It started with Bella getting lice after the first week of school. I don't know where she got it from but either I caught it early and was vigilant enough or they decided that her amazing mop of hair was the place to stay and never left. No-one else in the family got it including Lily and those two sleep in bed together. Needless to say I did a lot of washing and hair combing and inspecting and the bedrooms have never been cleaner!
That all started on the Monday, and then last Saturday, Childhood Cancer Awareness Day, Hurricane Ike made his way to Chicago and brought the rains. The deluge was unprecedented; I think we got something like 25% of our annual rainfall in a day. The storm and sewer pipes couldn't cope and the floor drain in our basement started spouting up like a geyser. It was the sewer backing up but I like to tell myself it was mostly storm water we got and there were no floaties. I had just recently kicked Brendan out of the office next to the kitchen because he was always coming out to tell us to 'shhh', so his office was in the basement. Once we were able to plug the drain and slow the water down we had a little chuckle at the state of his new office, sitting in the shit, it's better than crying. Anyway we didn't lose much, and know how to hopefully stop having that happen again, but I have postponed the real cleanup till next week because we have some big events this weekend.
Today, Bella's 2nd grade Brownie friends are hosting a Benny's World Lemonade Stand at the Rec. Center in Lake Forest. Please stop by if you are in the area or if you are going to soccer, Karate or dance. We'll be open from 11:30am to 4:00pm. Benny will be there too for his Sports With Dad class that he thinks is pretty cool.
The other big event of the day is Benny Rocks tonight at the Cubby Bear North in Lincolnshire. You can buy tickets at the door with cash or check or you can still go online with a credit card. We have an amazing group of people coming; I think it is going to be the social event of the year! It will be a very fun, casual night, just good friends and great music thanks to the awesome band, Not For Profit. Please join us and help us raise money to fund research for a cure for DIPG. (This is an over 21 event).
See you tonight and if you can't make it look for the photos next week.
Thanks everyone for checking in,
Love Lisa.
Friday, September 5th, 2008
Benny is still doing great. We sadly bid farewell to the grandparents, Janet and Petey on Monday. After 7 weeks, we all got pretty comfortable so it’s been a bit of jolt to have to go back to full-time mom and I’m sure they are missing all the commotion. However I’m sure Pete is also looking out on the backyard of Blizzardfield in Dubbo saying to himself, “how’s the serenity!”.
The update from Benny’s MRI on August 11th is that one of the measurements has increased by 2mm. It’s concerning but we are not feeling too anxious because we are learning that measuring these tumors is really a crapshoot, the tumor can increase in size by up to 25% and it is still considered stable, and for many kids it seems they start showing symptoms before these changes are even picked up on MRI. Our doctor wants to continue to be conservative so we are going to have the next MRI in 8 weeks rather than 12 so that there are hopefully no surprises. Benny is continuing to do well, I caught him walking up the stairs without crawling today which is new, he can only do it leading with his right leg but it was exciting to see. His big head was also confirmed when he went to his first Cubs baseball game with Daddy and couldn’t fit into the child caps, he’s an adult small. We can thank Uncle Doodles for passing on that gene, I’m sure Benny’s big head is helping his brain accommodate this nasty tumor.
Isabella started 2nd grade on Tuesday and loves it. Lily went to the Drop-In Center with Benny on Wednesday to help ease him back into the classroom and he did really well. I was a little concerned he would harass and beat up some kids like he likes to do with his sisters a couple of times a day, but he didn’t. I guess he just saves that for the ones he loves. Next week Lily starts Kindergarten, she’s a little nervous and I’m a little nervous for her too. Benny and I are going to miss her but I’m also really looking forward to just hanging out with Benny.
Did you know that this month is National Childhood Cancer Awareness Month in the USA. Here are some facts about Childhood Cancer and Benny’s diagnosis (DIPG – Diffuse Intrinsic Pontine Glioma) that shocked us and is the reason we set-up our foundation Benny’s World. We need your help to create awareness and in turn help raise funds for research so we can find a cure.
• Cancer remains the number one disease that claims the lives of our children. Each year cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined.
• Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer. That’s the equivalent of two average size classrooms diagnosed each school day.
• Brain tumors are the second leading cause of cancer-related deaths in children under age 20 in the USA. Leukemia remains the first.
• An estimated 3,410 children under age 20 are diagnosed annually in the USA with a brain tumor. DIPG accounts for about 250 of those cases.
• The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. Radiation typically only prolongs life for 6-9 months; there have been no other significant medical advances 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. A government report in April found a “near absence” of research into pediatric cancer drugs. According to a report by the Institute of Medicine, a non-profit group that advises the government on health policy, approximately half of the oncology drugs to treat children are at least 20 years old. 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.
• Despite the grim prognosis for DIPG and lack of advances in finding a cure, there have been significant achievements for other pediatric cancers. Today, a child with cancer has an over 75% chance of survival. Breakthroughs in pediatric oncology will undoubtedly continue to progress the diagnosis and treatment of adult cancers. Many of the principles in therapy used today in treating adults were first developed and tested for children.
You may wonder why Benny’s diagnosis, DIPG, is so hard to cure - here’s why, my science may not be exact but this is what I have learned. DIPG is not a solid tumor, it is like someone has thrown a handful of sand into the grass, the sand is the tumor, the grass are all the nerves running from the brain down the brain stem. You now have to remove each grain of sand without disturbing a single blade of grass. The brain stem contains all of the 'wires' converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation. That’s why this tumor is inoperable, even taking a biopsy is considered too risky. The next challenge for researchers is the blood brain barrier, (BBB). The BBB is a membrane in the central nervous system that restricts the passage of various chemical substances and microscopic objects (e.g. bacteria) between the bloodstream and the neural tissue itself, while still allowing the passage of substances essential to metabolic function (e.g. oxygen). So it’s doing a good job protecting your brain from harm but it is also makes it very difficult to get chemotherapy drugs to the tumors.
We need some really innovative research and fast. I’m hoping you have all heard about the initiative, Stand Up To Cancer (SU2C), that will be broadcast tonight in the US at 8pm. Please watch it and/or set your DVR’s. No-one can afford to ignore cancer, it affects us all directly and indirectly. If you miss it you can watch short videos on YouTube.
Stand Up To Cancer is a groundbreaking movement backed by an innovative approach to cancer research aimed at ending cancer's reign as a leading cause of death. With your help, SU2C is putting together the best and the brightest minds in cancer research, investing in their projects and taking the bureaucratic obstacles out of their way. This is where the end of cancer begins: when we unite in one unstoppable movement and Stand Up To Cancer.
Over 50 of the most renowned personalities in TV, film, sports and music will come together to make history. In an unprecedented television event, NBC, ABC, and CBS will simultaneously devote 1 hour of commercial-free prime time to raise funds for the fight against cancer.
I’m hopeful some funding will be directed towards pediatric cancer. SU2C is calling on the public to help take matters into their own hands, investing in a revolution that will change the way scientists and clinicians work to understand and treat these diseases. They are building interdisciplinary “Dream Teams” of scientists, clinicians, technicians and other experts, who will focus on a specific cancer problem. Hopefully this “out of the box” thinking will help us find a cure, fast.
http://su2c.standup2cancer.org/
If you want to also help us raise awareness for DIPG, don’t forget our Benny’s World T-shirts and Baseball Caps. We also have Reminder Bands in production; I’ll let you know when they are available. Get your tickets now for our event Benny Rocks on September 20th, it’s going to be a great night with all proceeds being donated to Children’s Memorial Hospital in Chicago for Dr Goldman’s research into DIPG.
I hope everyone has a great weekend, thanks for continuing to support us and follow our journey.
Love Lisa.
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