Finally it’s here, it’s been almost 6 weeks since my last real update.  I’ve had many conversations with you all in my head but it’s hard to find the actual time to sit down and write.  But I guess that’s a good thing because we have been having a really great summer.  You may want to grab a drink for this, it’s a long one!

Benny has improved all summer, as I mentioned on the last post he has worked out how to pedal a tricycle and he’s enjoying playing soccer, basketball and baseball.  He’s not as strong as he was last year but his coordination is still good.  He has been having physical therapy because his left side has been weaker than the right since he was on the steroids.  It is also probably related to his vision, it’s his left eye which crosses in.  His Physical Therapist, Bridget, is really happy with his progress, she thinks a lot of his favoring his right side now is out of habit.  In a different situation he would probably be able to stop therapy but we don’t know what the future brings and he enjoys the session so we will continue.  He likes consistency.  He definitely still has balance issues though which are related to the tumor.  He won’t go down stairs or slopes without being carried or he’ll turn around on his tummy and step down backwards.  And he still hates sand.  I don’t know if this is tumor related but last summer he wanted nothing to do with it, not even in shoes. Last year at the beach I made him stand at the water’s edge because I thought he would get used to it but his little legs were rooted to the spot like tree trunks for 10 minutes until I finally gave up and picked him up.  Well, nothing has changed this year, he’ll walk on grass, dirt and rocks no problem but sand still freaks him out, weird.

Since June 30th we have had many visitors pass through.  The McDonalds (from Sydney, Australia) stayed with us until July 5th and got to experience what we consider quintessential America, the Lake Bluff July 4th Parade.  We all had a wonderful time together; you never grow apart from good friends.  We have been gone from Australia for 10 years now on this “two year trip”.  We then had a week break which was all the time we needed before Janet and Pete, (Brendan’s parents) arrived for the rest of summer.  You might think we would be going crazy with all these visitors but it has been great, everyone is coming to help us out and most importantly Benny is thriving on all the attention.  In the few weeks break we have had from visitors Benny’s temperament has been at its worst.  He loves having all the people in the house to give him attention when he needs it.  That’s not to say that he doesn’t also grunt and scream at them when he is having a moment, but overall the tantrums are much more contained and easier to control, more like a typical 3 year old.  Janet and Pete had booked this trip two days before Benny was diagnosed, originally they were going to visit us for a while and then go and visit Grant and Jess in London, (Brendan’s brother, better known as Oigle, Doodles or Noodle).  Instead Doodles and Jess came back again to visit us and give lots of cuddles.  It was wonderful to have three Mrs Watters in the house!  Janet and Pete are staying with us till Labor Day (September 1st), although Janet is not yet convinced we will be able to get her on a plane.  However, Brendan has assured them of his assistance in boarding that plane.

On July 2nd, Brendan and I attended the Family Day portion of the International Symposium of Pediatric Neuro-Oncology. This conference is held every 2 years somewhere in the world and this time it was hosted by our hospital, Children’s Memorial in Chicago, and lead by our Neuro-oncologist, Dr Goldman and Division Head and Neurosurgeon, Dr Tomita.  I’m not sure what my expectations were going into this but I did leave realizing that Brain Tumors Suck!  It probably sounds crazy and it’s not like I didn’t already know that, but the Family Day did open my eyes to many other situations that I had not really dwelled on.  People sat at tables depending on their child’s diagnosis and I did feel like the Brain Stem tumor table was the one most people were glad not to be at, somehow we won the jackpot of all brain tumors.  Many of the other types of brain tumor have much better survival rates than brain stem tumors but it is at a cost, they all suck.  The long-term side effects that children are living with are very sad for both the children and families, and it did make my heart sink hearing about radiation side effects.  With Benny’s diagnosis you are so focused on the short-term and just getting beyond the first year that you don’t even really consider that if he is the miracle child that defies the statistics what treatment may have done to him?  But I am glad we went, the best part was the question and answer session with some of the leading doctors in the world.  It was comforting to see our doctor with these experts and know that he is plugged into whatever breakthroughs in treatment may happen in the world; these professionals are definitely devoted to helping our children, finding cures and improving quality of life. 

On a much happier note, Benny’s World took part in the parade for the 100th anniversary of the Lake Forest Day on August 6th.  Lake Forest Day is run by the American Legion and is a celebration for the local community; it includes a parade down the main streets and a carnival.  This year because it was the 100th year there were over 130 entries in the parade.  We entered Benny’s World to help create awareness of our foundation and to promote our upcoming fundraiser “Benny Rocks” on September 20th. In keeping with Benny’s love of the Wiggles, many of Benny’s friends decorated cardboard boxes to look like The Big Red Car and also included yellow ribbons and flags to salute the American Legion.  We borrowed a friend’s convertible for Benny to ride in and marched in the parade to the Wiggles song, “Toot, Toot”.  I wasn’t sure how Benny would react to the whole parade, I imagined I would be carrying him along the parade route screaming but he surprised all of us.  He absolutely relished his role of waving to the crowd and didn’t stop for the entire ride even as his weary head started to bob and his eyes close.  He loved it so much, he talked for days about how he rode in the car and everyone was waving to him.  We generated so much awareness for Benny’s World in our community, I can’t thank everyone enough who participated with us and cheered us on in the crowds, it was a really special day for Benny.

We ended the Parade at a Lemonade Stand set-up by our friend Pam Walker and her neighbors the Semmelman’s, to raise money for Benny’s World.  They also did a phenomenal job of raising awareness for Benny and Benny’s World. Their children helped and thanks to some very generous lemonade drinkers were able to raise $1,400 for Benny’s World.  It is these events that give me the strength to keep going and stay busy, we really appreciate the support in our community.

Right after the excitement of the parade, The Wiggles came to town and thanks to Bear Necessities, a pediatric cancer foundation which grants small miracles, we were not only able to go to the show but we also got to meet The Wiggles in person before the show.  Janet and Pete came too and Janet and I have decided it is definitely not inappropriate to have a crush on a Wiggle, the twinkle in Anthony’s eye put a spell on both of us!  He’s the blue guy and I’ve also got a soft spot for the Wiggles Dancer Ben, he makes me laugh.  When I grow up I think I want to be a Wiggles Dancer too!  As I expected, Benny was too overwhelmed to talk to the Wiggles at the meet and greet but nothing could stop him from doing his Wiggly Dancing when the show started.  Admittedly I haven’t been to many concerts lately but I think I could become a Wiggles groupie; they put on a great show.  It was so much fun to dance along, watch Benny and Lily dancing in the aisles (Bella enjoyed it too but was a little too cool to get up and dance).  These guys are genuinely having a great time on stage and are wonderful ambassadors for Australia.  Benny even got a shout out from Anthony on stage for his dancing.  We hope they come back to Chicago soon.

On August 13th we left for our Make-A-Wish trip to Eagle River in Wisconsin, 6 hours north from home.   Make-A-Wish usually grants a trip to Disney World for Benny’s age but before they had gotten in touch with us we had decided to take Benny in the spring on the advice of our doctor.  We loved Disney World but it was exhausting so Brendan and I wished for a much more low-key family trip and our Wish Granters came up with the perfect plan.  We were picked up on Wednesday morning by a bus that seats about 20 people.  As soon as Benny got on the bus he told us all that this was “a really cool bus”.  Brendan drove our car so that we had a car up at Eagle River and could drive ourselves home.  The bus ride was an adventure, the kids had the best time moving around the bus, trying out different seats and eating many cookies made by our wish granter, Barb.  Our bus driver was 78 years old and had driven buses for Greyhound for 40 years.  He had printed off directions from MapQuest and was leading the way but unfortunately his way wasn’t the most direct.  After exiting the freeway and turning on to some country roads, Brendan’s GPS map recalculated our time left to go from 5 hours to 7 hours and you can imagine his phone calls to me.  So Brendan took the lead and eventually got us back on track but it was totally worth it to see Lily’s excitement at all the farms we drove by on the back roads of Wisconsin.  Pete convinced us that Brendan would be lonely driving by himself so joined him in the car after the first stop leaving Janet and I to endure the bouncy ride with the kids.  Janet kept an eye on the bus driver in case he fell asleep.  We made it to Wild Eagle Lodge safe and sound with the kids begging to go home in the bus too but Janet and I very happily told them that unfortunately the bus couldn’t wait for us the next 5 days, whew.

We had 5 nights at Eagle River and it was perfect.  Janet and Pete were able to rent the condo next to us so we were very comfortable in our 2 bedroom homes with balconies overlooking Duck Lake.  We rented a pontoon boat for 2 days and cruised many of the lakes and attempted to fish.  We weren’t very successful but had a good time trying, the girls loved jumping off the boat into the lake and we all enjoyed imagining which house on the river we would like to buy.  We spent the days very lazily either on the water, playing at the resort or in the pool. We ate out at restaurants, some we were able to dock our boat at, and cooked on our grill.  For two of the nights, Janet and Pete’s good friends from Dubbo, Lorna & Ernie stopped by on their world tour. Eagle River will be a memorable stop for them after London, Paris and New York, Lorna even managed to do a little shopping in the downtown metropolis of Eagle River (population 1512).  We couldn’t have “wished” for a more perfect trip, Lily even thought it was better than Disney World and they all hope we can come back next year.  We can’t thank the Make-A-Wish organization enough for giving us this wonderful family time together.  I’m sure many of you have donated to this organization, us too, and we never imagined we would be one of those families.  It’s definitely not something you wish for, but we are very grateful.

So summer has been anything but dull.  We have a few weeks to go before school starts.  Bella will be going into 2nd grade and Lily will be starting Kindergarten.  Bella is made for school, the typical eldest child who likes to do the right thing, (most of the time).  Lily is what I like to call “magical”, she’s sharp but definitely doesn’t fit the mould for a straight A student.  Reading and writing is not her thing but her imagination and love for animals will hopefully endear her to her teachers.  She has no trouble making friends so I’m not concerned about that but a whole day at school is going to be a challenge, I’m sure she will enjoy it.  Benny is due to start preschool this year but I’ve decided to just keep using the Drop-In Center where they know him and he knows them.  Mrs Sue is one of his very favorite people.  The Drop-In Centers flexible schedule will allow Benny and I to do some classes together and just hang out together, I’m looking forward to that.

Thank you everyone for continuing to follow our journey and support us.  We are making the most of these good times but it is also tough not knowing what the future brings.  Working on events for Benny’s World keeps me motivated, Benny really enjoys the attention and I hope we can help find a cure.  Since Benny was diagnosed on January 18th, 2008, 29 children have died from this tumor, and this is not all of the children who have passed, only the ones who are listed on the website, ICouldBeYourChild.org.  This tumor is rare, but when you are immersed in this world, more than a classroom of kids is overwhelming.

Benny Rocks is our next big fundraiser.  Tickets are available online, all money raised from tickets sales will go directly to research to find a cure for DIPG.  It’s going to be a really fun, casual night and we are hoping for a big turnout.  This is an adult event, book your babysitters and organize a group of friends.   We got to see the band, Not For Profit, playing at a local outdoor concert in July and they were phenomenal.  We’ve posted a video of Benny dancing, he thought they “were really good”.

We go back to the hospital tomorrow to meet with our doctor and get his opinion on the MRI last week and take a look at the pictures.  We’ll give you an update tomorrow.

Please check out all our photos, there are photos from the parade and a video from The Wiggles concert.  I’ll post photos from Eagle River this week too.

Love Lisa.

Monday, August 11th, 2008

Benny had another MRI today and the tumor is unchanged! We were hoping and anticipating this but you never know so we are glad it is stable. Benny has been doing so well the last few weeks, he even worked out how to ride his tricycle!

I'm hoping to bring you all up to date tomorrow with all the activities that have kept us so busy this month, including lots of photos. The long message is really coming, I promise!

A perfect summer continues,
Love Lisa.

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