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

Thursday, September 2, 2010 12:11 AM CDT

I had planned to update yesterday - Benjamin's 14th birthday - but the day got away from me faster than I realized. It is so hard to believe that another year has come and gone, and had Benjamin lived he would now be 14 years old and in the 8th grade. As with all big days for us - birthdays, holidays, anniversary dates - the days leading up to Benjamin's birthday were harder than the actual day. I don't know if it is the build-up of stress in the days beforehand, but once the day arrives (while still difficult) I guess the anticipation is over, and we get through the day. We talked with the kids about why the day was so special, what Benjamin was like as a baby, and where "Benny" is now. For Jeremy and Avery it is still confusing to them that they have another brother who doesn't live with us, but who lives in Heaven. They wonder about who he was, what he's like in Heaven (is he still a little boy, or is he a big boy who looks like a 14 year old, etc..), and if he is happy in Heaven. Big questions to try to explain to little ones. We bought a balloon for them to put messages for Benjamin on, and we went out in the backyard last night to let it go. They really seemed to like this, and they watched and watched until it was out of sight. Because of doctor's appts. and soccer practice last night we weren't able to have some cake, but after school today Zachary wants to help me bake a cake and tonight we'll celebrate Benjamin's day with some birthday cake too. Zachary is taking this very seriously and wants the baking to be something that just the two of us do together. He doesn't say much about his feelings, and I know that he is confused as well. He knows that Benjamin being gone is a sad thing, and he knows that Brian and I are still hurting and missing his brother, but I'm afraid that Zachary just can't remember much any more about Benjamin and that time in our lives. He wants to remember, and he is frustrated that he can't remember more. He tries to be very tough about it all, but bits and pieces sneak out from time to time. If Jeremy brings out one of Benjamin old toys and plays too roughly with it, Zachary gets very worked up and makes sure that Jeremy is more careful so that it won't break. Whenever we get a box going for things to donate, too, Zachary refuses to allow any of Benjamin's things to go in the box - whether it is something he has outgrown or not. I wish that he had more memories, but we knew that because of his young age at the time alot of the memories for him would fade. Zachary is doing really well, though, and just this week he started 3rd grade. He's back to fall soccer, and he's enjoying spending all of his free time with Jeremy and with his friends - usually either playing with Star Wars guys, watching Star Wars movies or building Star Wars LEGOs. I'm sensing a theme there...lol!!

Jeremy is 5 years old now, and he's getting ready to go to preschool. He is beyond excited to finally get his turn to go to school. Mommy is less than thrilled (lol!!) for one, he's still my baby, and secondly, he has a peanut allergy. I've been dreading having him out of my sight for school days since his allergy was diagnosed at 18 months old, but the time is here and I'm just going to have suck it up and be a big girl about it - hahaha! He's also a little soccer player now, and he just loves it!

Avery just turned 3, and she is the self-proclaimed princess of the family. She loves all things princess, pink, sparkly and girly. She loves to be with "her guys" as she calls them, and she is wonderfully sweet with her baby brother. She recently started taking ballet (or "ballerina girl classes" as she calls it), and she's always dancing around the living room trying to get one of "her guys" to be her prince. She totally fits the nursery rhyme "when she was good, she was very very good, but when she was bad..." LOOK OUT!! (Hahaha!) She's a feisty little one, but I guess in a houseful of boys she's going to have to be....lol!

And finally, our little Nathaniel is 5 months old now. He's such a little sweetie and also a chunky little monkey - he's is giving Benjamin a good run for his money in terms of being a roly-poly little baby, and I'm just loving every minute with him!! His personality is very fitting for being the 5th baby - he is very laid back and just kind of watches the chaos unfolding all around him without a care in the world. He wakes up in the morning with a smile on his face, and he is becoming quite a flirt with every girl or lady who stops to talk or smile at him. Of course since he is our last baby the time seems like it flying by at warp speed despite my best efforts to put the breaks on...lol!! We all just love him to pieces and feel so blessed to have him here.

Brian and I are great, and we're just trying to keep up with the kids. Now that everybody's getting bigger they all have some sort of sport or activity so that is really keeping us hopping. On one particularly crazy day of running around we had to just stop and laugh because we realized that someday it will get even crazier because little Nate will be big enough to have his own stuff thrown into the mix. Life is good, and we are happy, and even though we are always missing our boy, we still feel very blessed.

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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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