Fire Trucks Rule
The local fire department invited us over for a quick ride in the firetruck and tour of the fire house.
To Ryan, Joe and the rest of the department: thanks for the smiles!
Wednesday, November 23, 2005
Tuesday, November 22, 2005
Never would have thought of this
Ya, I’m a dork. This comment from Bo today made me laugh at myself…
By all means, Ben is more than welcome to play with the badge. It comes out of the frame very easily. Take the back off and the badge is only pinned in there. He can put it back in when he gets tired of playing with it. - Bo
Some solutions are just too simple to think of.
Sunday, November 20, 2005
A Truly Amazing Event
The High 5 For Ben events were a huge success by not only raising a significant amount of money for Ben’s medical expenses, but by also bringing our amazing community of supporters together. The success isn’t too surprising when you consider the quality of the people who volunteered to organize the events and help out. We had teachers, co-workers, friends, family members, classmates, police officers, fire fighters, ambulance drivers, church groups, local business owners and doctors standing with us to support Ben in his fight against cancer. Some highlights of the dinner were:
- Walking into the gym filled with people. It was hard getting an accurate head count, but it had to be at least two hundred people. The extra tables and chairs from the Saddleback Golf Course were put to good use.
- Having my head explode as I gazed upon the mountains of spaghetti and stacks of pizza boxes donated by Pizza Plus and Dominos. And many thanks to the wonderful folks who served food.
- Getting trampled by the hordes of kids making a rush for the ice-cream donated by The Jazzy Bean - my official life-giving caffeinated hot beverage distributor.
- Having Rhonda get Ben out of his shell by having him sit with her on stage as she introduced the evening. Ben has always been a bit shy in crowds and is easily disturbed by loud noises, but he had a great time from that point forward.
- Seeing the look of amazement and then disappointment on Ben’s face as he was made an honorary police officer. He was amazed with how cool the framed badge looked and being saluted by the police department. And then he was disappointed as he realized that he couldn’t get the badge out to wear and play with. He wore his police cap for the remainder of the evening and started forming a plan to get the badge out of the frame (we may need a 24-hour guard placed on it).
- Realizing that neither Melinda or I brought Kleenex with us as we listened to Ben’s Song (lyrics posted below) written by The Sleepness Knights - a rock-n-roll band made up of police officers. We treasure the framed copy of the lyrics that they gave us and can only hope that the song changes your lives as much as it has changed ours. Ben is inspired to become a drummer since being given a set of sticks after the performance. I can only hope that they make quite drums.
Thank you to everyone who volunteered and donated. This was truly an amazing event and we feel blessed to have your support. May you each find the support, peace and love in your own life that you have shared with us.
Ben’s Song
I think I met my hero,
he said, “I’m only six years old.”
I saw in him great courage,
he said his body’s feelin’ old.
He said he likes football
and I watched his mother cry.
He said, “Don’t worry, Momma,
I dreamt I saw an angel fly.
She watches over me
every single night.
She says,
‘You’ll run and play again,
and everything’s alright.’
I hope that summer
never has to end.”
Oh how I envy a child
with angels as his friends.
I asked him what he wished for,
he said, “I want a new squirt gun,
so I can chase my sister
outside in the sun.”
Isn’t it amazing
the innocence of youth.
Did you hear he told his momma
he dreamt he saw an angel fly?
“He watches over me
every single day.
He says, ‘I’ll run and play again,
and that everything’s okay,’
I hope that summer never has to end.”
Oh, how I envy a child
who has angels as his friends.
“I dream of being a pirate,
sailing out to sea.
Clear blue water
between God and me.
I’ll sail towards adventure,
My guinea pig and me.
Oh, Moonlight.
Don’t worry Momma
I dreamt I saw an angel fly.
They stand right by my side
when I am feeling weak.
They help me find the courage
to fight the challenge every week.
They rock me in their arms
when I can’t fall asleep.
My family are my angels
and angels are my friends;”
Oh, how I envy a child
with angels as his friends.
- The Sleepness Knight
I think I met my hero,
he said, “I’m only six years old.”
I saw in him great courage,
he said his body’s feelin’ old.
He said he likes football
and I watched his mother cry.
He said, “Don’t worry, Momma,
I dreamt I saw an angel fly.
She watches over me
every single night.
She says,
‘You’ll run and play again,
and everything’s alright.’
I hope that summer
never has to end.”
Oh how I envy a child
with angels as his friends.
I asked him what he wished for,
he said, “I want a new squirt gun,
so I can chase my sister
outside in the sun.”
Isn’t it amazing
the innocence of youth.
Did you hear he told his momma
he dreamt he saw an angel fly?
“He watches over me
every single day.
He says, ‘I’ll run and play again,
and that everything’s okay,’
I hope that summer never has to end.”
Oh, how I envy a child
who has angels as his friends.
“I dream of being a pirate,
sailing out to sea.
Clear blue water
between God and me.
I’ll sail towards adventure,
My guinea pig and me.
Oh, Moonlight.
Don’t worry Momma
I dreamt I saw an angel fly.
They stand right by my side
when I am feeling weak.
They help me find the courage
to fight the challenge every week.
They rock me in their arms
when I can’t fall asleep.
My family are my angels
and angels are my friends;”
Oh, how I envy a child
with angels as his friends.
- The Sleepness Knight
Sunday, November 13, 2005
Sam and Super Joe
Fourth post today as there are so many cool things going on that I have to share.
Sam Walsdorf has the same tumor as Ben and lives in Lakewood. We’ve mentioned how wonderful he and his parents are a few times, but have not provided a link over to their site yet.
Sam went to a hockey game and meet several Avalanche players last week (I am so jealous). Read the story, but make sure you see all of the pictures (click the “See All Photos” button under the first picture). I love seeing Sam smile like that.
“High 5″ becomes “High 3″
They’ve canceled the Tuesday and Thursday activities at Ben’s school next week to help focus the events to the days with the most attendance. I recommend you check their site before driving up to events just in case things change again.
Recap and Progress Report
It’s been a while since I’ve done an update on Ben’s progress and I’ve been getting swamped with questions about Ben’s type of cancer, the treatments that we’ve done and what comes next.
Ben has been diagnosed with diffuse pontine glioma - a cancerous tumor in his brainstem. Click here for an understandable explanation and an image of this type of cancer. His initial symptoms were loss of balance and coordination while walking and performing fine motor skills. He started drooling and experiencing facial palsy a day before he was admitted to The Children’s Hospital of Denver.
Ben starting taking the decadron steroid while admitted at the hospital to relieve the swelling of his tumor. The steroid had a wonderful affect on his initial symptoms, but came with the standard side affects of a chubby face, a lack of energy and an overall crabby mood. He’s been off of the steroids for over a week and is starting to feel and act like a normal kid again.
Ben underwent an exhausting six week radiation treatment program at the University of Colorado Hospital at Fitzsimmons. He spent most of the six weeks in the car or sleeping on the couch. We’re getting cautiously excited about the results of the treatment now that Ben has regained some of his strength.
We’ve consulted with a naturopathic doctor here in Denver to start Ben on a regiment of vitamins and herbs to increase the effectiveness of the radiation treatment and decrease the tumors ability to grow.
We’ve also meet with Dr. Prasanta Banerji, a homeopathic doctor from India. He has recommended a homeopathic remedy for this type of brain cancer and is confident with the results he’s seeing in India. There has been a limited amount of testing on this remedy in the US, but we’re hopeful that it assists Ben’s immune system in its fight against cancer.
So, where are we now?
Ben is doing quite well. He can walk up stairs without assistance, run for short bursts, ride a scooter, draw and write without his hands shaking and shows little sign of facial palsy. He’s starting to go back to school on a limited basis (mainly to accommodate our schedule of doctors appointments) and is looking forward to his Make-A-Wish trip to The Wild Animal Park in San Diego in January.
Ben has his next MRI the week of Nov. 28th to get an ideal of how affective the radiation treatment has been in reducing the size of his tumor and the amount of cellular necrosis that has occurred.
Dr. Foreman, Ben’s oncologist, has told us that there are several experimental treatments being conducted at this time and we’re starting to review them. I can’t say that we’re too excited as none of the treatments are curative and most of them include a fairly strenuous regiment of chemotherapy. We are keeping an open mind and will review all of the choices as we learn more about each treatment.
Watching Ben get sick and accompanying him to his treatments has not been easy on Madie. We can only imagine how these experiences will shape her life and hope that this inspires her to great things. Her three wishes were fulfilled as we planted a garden out front, got her two disco balls and (thanks to the Sanchez family) rode a horse. It’s been wonderful watching her and Ben regain their childhood together as he’s improved.
Melinda has enjoyed having the kids at home again and is getting back into her crafty holiday projects. She threw a great Halloween shindig for the kids that filled the house with laughter, costumes and games. I’m not exactly sure what she has up her sleeve for Thanksgiving and Christmas, but I predict that it will blow last year away.
My employer has been more than generous in granting me leave and I’ve started working part-time again. Going back to work is being a bit more difficult of a transition than I imagined. The people I work with incredibly supportive and are helping me get back into the groove.
Thank you to everyone that supports us. We wish you all the peace and love that you have shown us.
A horse is a horse is a horse of course…
Yes, I do know the entire Mr. Ed theme song. I’m such a geek.
We had a wonderful time riding horses (and the ATV) with Wendy and John Sanchez. The smiles sum up the day better than any post I can write.
Ben on Kiki
Madie on Kiki
Rachel, Sara and Madie
Grandpa Bill and Ben cruising on the ATV
Melinda and Ben trying to talk me into buying a horse
Thank you, Wendy and John, for opening your home to us and making our wishes come true.
Wednesday, November 9, 2005
Finally off steroids!
Each passing day has continued to get better and better. Ben has officially been off steroids since Saturday, and boy is he feeling good! Both Ben and Madie went to school on Friday (Ben went for the last hour of class) and had a great time. Everyone at the school has been so amazing and supportive! We hope to get Madie back on track 3 days a week, and Ben will attend based on his energy levels. Speaking of which, he has had wonderful energy and many of his symptoms have improved from before he was even diagnosed! We are soooo happy to see the real Benjamin back; I just can’t wait for some of that steroid puffiness to go down. There are still some muscle weaknesses associated with the steroids that will take a little more time to over come. Ben is very determined though, and often insists on doing things by him self.
We saw Dr. Foreman today after a 3wk break, and he seemed very pleased with Ben’s condition. He indicated that if there were going to be a problem with necrosis, we would probably have seen an indication of that by now. Since Ben appears to be so stable, we just sit tight until his next MRI in 3 more weeks. If all looks stable on the MRI, then we will be free to discuss the possibility of further treatment through any clinical trials that may exist.
It looks like the kids will be going horseback riding this Saturday, and Madie couldn’t be more excited. I just wonder if she will actually get on the horse, or chicken out at the last minute. The same goes for Ben, although he seems to have gained a little more willingness to try new things.
The “High Five for Ben” fundraiser stars next week, and I am truly touched by it. We hope to attend as much of it as we can. Friday night’s spaghetti dinner sounds as though it may be especially important. A local band of law enforcement officers is playing, and have plans on writing a song for Ben!!! This will be a truly wonderful gift. They also plan on making Ben an honorary officer, complete with badge. Ben will be thrilled, even after I explain to him that he can’t throw his sister in jail.
Nothing new to report on the Make-A-Wish trip, we’re still waiting to hear back from them regarding the actual travel arrangements.
I guess that’s all for now. Please continue to leave comments, the kids (us too) get really excited to read them. They help us keep our chins up!
Love and peace to you all
Melinda
Friday, November 4, 2005
High 5 For Ben
Carbon Valley Academy (Ben’s school) is holding a weeklong fundraiser to help with Ben’s medical bills and everyone is invited. We’re definitely going to the shindig on Friday. Here’s the agenda:
Monday, November 14
Pancake breakfast from 6 to 8 AM.
$5 for adults, $3 for kids under 12.
$5 for adults, $3 for kids under 12.
Tuesday, November 15
Jog & jump rope for pledges from 3 to 4 PM.
$1/lap and $1/5 min of jumping.
$1/lap and $1/5 min of jumping.
Wednesday, November 16
Bake sale from 3 to 4:30 PM.
Email Shannon Barton to donate baked goods.
Email Shannon Barton to donate baked goods.
Thursday, November 17
Talent Show from 4 to 6 PM.
$5 tickets, kids under 3 are free.
$5 tickets, kids under 3 are free.
Friday, November 18
Spaghetti dinner and Liks ice-cream from 5 to 7 PM.
Live music featuring The Sleepless Knights (a local law enforcement band).
$10 for adults, $7 for kids.
Live music featuring The Sleepless Knights (a local law enforcement band).
$10 for adults, $7 for kids.
More details are available on their site. Thanks to Shannon and the rest of the gang that masterminded this event - you’re awesome and we love you!
Wish Update
Ben has wished to go back to San Diego! He had such a great time out there last spring and is excited to go back. He really wants to feed elephants at the Wild Animal Park. We’re not sure that we can do that, but we’ll see what we can do. We’re currently working out the details with the wish granters and are looking at the third week of January for our trip.
I think Madie put some pressure on him to go back to Sea World - she hasn’t stopped talking about Baby Shamu.
We’re also looking forward to seeing Colin and Roby while we’re out there again.
