In Loving Memory of our Son Benjamin Michael Jones

Welcome to Benjamin's web page. Our then five year old son was diagnosed May 15, 2002 with a brain tumor - Medulloblastoma. He had surgery May 16th, chemo and radiation through the summer of 2002, and since the fall of 2002 he received five more rounds of chemo. At the time of surgery Benjamin's doctor was able to completely remove his tumor, however, two tiny nodules remained and were out of reach to be surgically removed. Thankfully, both nodules were totally dissolved by radiation, and Benjamin finished out his protocol with chemotherapy which ended in May 2003. Benjamin was blessed with a year of remission, and during this time our family enjoyed a wonderful year of normal life again with our precious little boys, a trip to Disney from Make-A-Wish, Benjamin went back to school, and he made many new friends at Tussing Elementary and he joined the Cub Scouts. We are heartbroken to have learned that Benjamin's cancer has come back after his most recent scan on May 5, 2004. We received the devastating news that no child with as much cancer as Benjamin has has ever survived. We found out that he now has two brain tumors and multiple tumors up and down his spine. We were crushed to learn that we have run out of options for treating Benjamin's cancer. One of the brain tumors is located too deeply inside the brain for surgery to be possible, Benjamin has already received his lifetime maximum of radiation, and his little body can no longer tolerate the chemo. Our only choice was to try another chemo that would not give a cure, but would only buy maybe an extra month of time. We decided against the option after learning that this extra time would not be quality time for Benjamin - it would leave him very vulnerable to infections, fevers, and guaranteed hospital stays. We want to spend this gift of time as comfortably, happily and as pain-free as possible for Benjamin and for our family. As of May 2004 Benjamin was admitted into the Hospice Program through Children's Hospital and he has been receiving outstanding and compassionate home nursing care since that time.
Update Sept. 2004 - After an MRI on Sept. 20th we received the wonderful news that, while Benjamin does have a very tiny third brain tumor, the other two spots only grew very slightly, and we found out that Benjamin does NOT have cancer spread throughout his spine as was first believed. The spots in his spine that still light up are now believed to be vascular. Even more exciting was the news that a new clinical trial was getting underway that Benjamin was elegible for. Benjamin has been taken off of hospice care and enrolled in the new trial. Chemo treatments are set to begin Tuesday Sept. 28th 2004. We are praying that this second chance will be the miracle that we've all been looking for!!
UPDATE Nov.2004 - After a scheduled MRI to check how well the chemo was working we learned the very heartbreaking news that all three of the brain tumors have grown while on chemo, two spots of cancer have now spread to the bone in Benjamin's skull (something so rare that only happens in less than 0.1 percent of medulloblastoma cases), and he does indeed have cancer that has spread to his spine. What before had been the size of pin-points have now grown into nodules througout Benjamin's spine. The chemo (which was our last chance) had absolutely no effect on the cancer. We have re-enrolled our son back in the Children's Hospital Hospice program, and he is continuing to receive the same outstanding care that he had all summer. Our hearts are heavy as we now have no other options but to pull even closer together and to enjoy every second with our little guy.
Please feel free to visit Benjamin's web page often and to send a message in his guest book. We appreciate all of the love and support that has been shown to Benjamin and to our family. Benjamin Michael Jones Sept. 1, 1996 - April 7, 2005

*Please remember Benjamin's Buddies in your prayers, too. Some are listed as links at the bottom of the page, and we added more here since there is only space for three links.
Willpower - Little Will was diagnosed with FA last year. MatthewPasserella - Matthew was diagnosed with a brain tumor a couple years ago - the day his baby sister was born. CancerKids - This website lists the stories of so many children going through the same battles. Benjamin is listed under Benjamin Michael Jones.
Jace Carrico - This past Dec. 2003 this family started on the road of treatment for their adorable little boy, Jace. He was also diagnosed with medulloblastoma.

Brant Hamilton - Brant and his family really need our prayers right now.

Jacob Beresh - Jacob is a great little guy who has completed his treatment and is enjoying life!

Journal

Monday, February 18, 2008 9:19 PM CST

Hi everyone!

Just wanted to send out a quick note with some of the latest goings on around here. Also, Brian updated one of the pictures on the photo page with a new one of the baby. She's wearing a little tu-tu that he picked out for her before she was even born. We joked way back then that it would be so fun to see her wearing it when she turned six months old, and here she is. Boy, did that 6 1/2 months go by too fast! She's sitting up on her own now and able to play with some little toys without falling back over. The boys spoil her like crazy and call her their princess. We always joke that we almost feel sorry for any boys that try to date her in the future because they will have to get through Daddy and two very protective big brothers - haha! Zachary is having a great time in kindergarten. He's doing really well in school and he's so happy to be a reader now! He's just finished taking an art class that he really liked (he loves doing art projects, and we can always tell where he's been working because there will be a little trail of scraps of construction paper, crayons, etc...), and he's trying to decide between T-ball and soccer this spring. Jeremy is having lots of fun being two (and lots of fun keeping us on our toes - haha!). He loves singing and playing the drums, and his new thing is dressing up in costumes. Jeremy gets this idea from Zachary - they both like to dress up like Spiderman, Cowboy Woody (from Toy Story), Elmo, etc...Jeremy spends a lot of time looking out for "Avie," as he calls her, too. We're really curious about how well they will get along once she starts getting into his things, but at least for now they are like two peas in a pod. We're all just ready for winter to be over so we can head outside again and enjoy some warmth!

We heard a really sweet story today that just warmed our hearts. Brian was at the grocery store and he ran into the mom of one of Benjamin's best friends from school. The boys were in Cub Scouts together and had a lot of fun times together in Benjamin's only real year of school (first grade was his only year in the building - he was tutored at home throughout kindergarten and second grade by our dear friend Nancy). She told Brian that the kids from Benjamin's Cub Scout pack were just moving up to Boy Scouts, and they had put together scrap books from over the years in scouting. She said that her son, and actually all of the boys, included pictures of Benjamin in their books. That just really touched us that they were still thinking of Benjamin and had included him in their memories. What a sweet group of 5th grade boys they are! I can't imagine that Benjamin would be a 5th grader now. Sometimes when we see kids from Benjamin's class we wonder what he would be like - if he would be as tall as them, how much older he would look, what would his likes and dislikes be at this age. We can see so much of him in Zachary, Jeremy and Avery, and that is a comfort.

Well, I'll try to update again with more new pictures soon. We keep just changing the one picture on the photo page because we haven't figured out how to save the other photos of Benjamin on that page. Once we do, though, we'll be able to update more than one photo at a time - haha!

Love, Anne ,Brian, Zachary, Jeremy and Avery

Hospital Information:

Columbus Children's Hospital
700 Children's Drive
Columbus, OH 43205
614-722-2000

Links:

E-mail Author: walsh1994@sbcglobal.net

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