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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
Tuesday, April 7, 2009 3:49 PM CDT Wow! I can't believe that it has been over a year since we've sent out an update! I thought that since today is the four year anniversary date since we lost Benjamin now was the time to update. It is so hard to believe that four years could have gone by, and so much has changed, but the empty space in our hearts has stayed the same. Benjamin would be 12 and 1/2 now - almost a teenager! I try to picture how he would look now, what he would be interested in, what his hobbies would be...but honestly, I can't even imagine. The only thing I'm certain of is that he would get the biggest kick out of his siblings (being a big brother was so important to him), and he would love being the ringleader of this little group.
Zachary will turn 7 years old next week, and he's having a great time, and learning a lot, in the first grade. Ironically, Zachary's first grader teacher is also the same lady who was to be Benjamin's kindergarten teacher had he not been home schooled throughout that year due to medical treatments. He just loves her, and it is hard to believe that first grade will be over soon. Zachary is really getting into soccer - this spring is his third season - and his Daddy is a "helper" coach. Zachary is also a Cub Scout, and he was so proud to win 1st place at the Pinewood Derby for the Tiger Cubs division recently. He's still able to remember hazy bits of his time with Benjamin, but unfortunately many of his memories have faded. This breaks our hearts, and causes his heart some considerable pain, too, but we just try to help him focus on what he can remember and on knowing how important he was to Benjamin. The two of them were best friends, and I think Zachary still really misses that companionship they shared.
Jeremy is 3 and 1/2, and while he's a tiny little guy, he doesn't let anything stand in his way. He loves to play with his big brother and his little sister and all of his neighborhood friends. He just recently got his first two-wheeler (with training wheels), and he's so proud as he zips up and down the front sidewalk. He and Avery play non-stop with each other, especially while Zachary is at school, and they get along really, really well together. Jeremy, of course, never knew Benjamin since he was born about two months after Benjamin died, but we can tell that he really wants to understand about Benjamin, and Jeremy tries to put himself into stories about Benjamin. If we tell a story about Benjamin, Jeremy will sometimes say that he remembers that, or that Benjamin "told him" that story when they were in Heaven together before Jeremy was born. Jeremy is the spitting image of Benjamin at this age, and we tell Jeremy that to help him feel a connection to his big brother. Jeremy also loves to hear about how Benjamin chose his name. Brian and I know that Jeremy would just crack Benjamin up - he would love that Jeremy is his little "mini-me," and Jeremy's scrappy little personality would keep him guessing (and on his toes) - as it does for us.
And then there is Miss Avery. She's 20 months old now, and she's the little princess of the family (in a good way - haha!). I always joke that after having three boys I don't think we could have ordered up a "girlier" girl. That girl loves anything pink, purple or red, anything flowery or "pretty" (as she says), Disney Princesses, Dora the Explorer, Barbie, baby dolls, etc...She is running around all over the place, talking, dancing, and cracking us up as we get used to a little female personality in the house. I am loving having a little girlfriend, and I get the biggest kick out of watching Avery both charm and fluster her poor Daddy. The drama and emotions of a little girl are very new around here - haha! When I see older kids in the neighborhood pick Avery up and play with her I try to picture a twelve-year-old Benjamin holding her. I think he would have been very protective of a baby sister. She can say "Ben," and she knows who he is in the family pictures we have around the house. I'm sure none of it makes any sense to her yet, but just as Jeremy has grown up always hearing that he has a big brother in Heaven watching over him, Avery will come to understand the same thing in time.
Brian and I are doing alright, too. Things are always busy with the kids, the family, and work for Brian. We're just enjoying Zachary, Jeremy, and Avery and each new stage they reach. Zachary is now doing things that Benjamin never got to do (Zachary is almost 7, and Benjamin relapsed when he was 7). The milestones he's reaching (and someday Jeremy and Avery will also reach)that Benjamin never was able to are bittersweet for us, but we try to focus on the "sweet" with them and keep the sadness of Benjamin's lost chances to ourselves. We want them all to experience wholeheartedly the joys that should deservedly come their way. We still have a really good life together as a family, and we are so lucky for all that we have. There will always be a huge hole in our family, but Benjamin is always a part of our every day lives in our pictures, our stories, and our hearts. It never gets easier that Benjamin is gone, but the way we handle our loss, in our day to day lives, gets more manageable, I guess that is the best way to explain it. We will love him and miss him forever!!
Read Journal History
Hospital Information: Columbus Children's Hospital
700 Children's Drive
Columbus, OH 43205
614-722-2000
Links: http://www.christithomas.com A sweet little girl we met at Children's Hospital who is fighting Neuroblastoma
http://www.caringbridge.org/oh/benjamin Ben Thomas is Benjamin's friend and neighbor who recently completed treatment for Rhabdomyosarcoma.
http://www.caringbridge.org/oh/lukeervin Luke's Mom has maintained his web site as a beautiful tribute to him.
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