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.
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.
JUST A NOTE TO LET YOU KNOW THAT BEN AND HIS FAMILY ARE REMEMBERED IN PRAYERS AND POSITIVE THOUGHTS REGULARLY IN OKLAHOMA AND WE WISH YOU A CHRISTMAS FULL OF CONTINUED LOVE AND JOY AND A NEW YEAR FILLED WITH THE SAME.
Nice to see ben is getting better and better. One he will be completely okey. However, recently i lost my 7 years daughter due to brainstem diffuse pontine glioma. For detail please visit http://www.kamrunshahed.com
Shahed
Toronto
19 Oct 2006
Shahed Aziz,
Ben passed back in March. I took a stroll over to your site, but didn’t see a section for comments. Hope you don’t mind me responding here.
Thanks for sharing your pictures and videos - Shamima was such a beautiful little girl. It always breaks my heart to meet another family that has lost a child to this cancer, but it also helps me with the grief of missing Ben.
We’ve built up a strong network of families online and I hope that we can offer you some support. Most of them are registered at the family support network at jthf.org. Please contact me if we can help in any way.
Sending all my love to your family.
-Dean
Dean, Dear Dean, I am very sorry for Ben. When i opened the website i thought it was current one. I didn’t see the date at the top which shows 13 Nov 2005. I saw this website back at Dec-Jan and found that he was getting better and better and started to go to school. I was delighted, at least i know patient with Pontine Diffuse Glioma getting better. But now i feel very sorry for Ben and so as his family. When i saw Ben’s pic i just keep looking at him. I know it is the effect of steriods. We all saw the similar scenario of Shamima, how she suddenly changed from March 2006 due to high dose of steriod. If you read her story you will know she was very positive and had extra-ordinary will power. Now she is no more and our regular routine is to visit the graveyard. Today is the day when she was diagnosed with brain tumor last year 2005. Some time we feel we should give up everything and go back to our country Bangladesh where our parents are there but then she will be all alone here.
Shahed
Toronto, Canada
21 Oct 2006
aziz_shahed@hotmail.com