Jacob was diagnosed with a Diffuse Intrisic Pontine Glioma (brain stem tumor) on 5/19. He fought for 10 months, but began his new journey on 3/21/10 as he earned his wings.
In April 2009 we started noticing Jacob's eye was blinking funny. We didn't think anything of it at first, and figured he was just tired.
The week of 5/11 is when the issues really started. That Tuesday Jacob started complaining of a headache and "seeing double". He was also acting spacey. I called and made an appointment with the ped for the next day, but was only able to get in with the nurse practitioner. She looked him over, and then referred us to an opthamologist.
My first thought was his medicine dose was too high for him now since he had lost five pounds since January. We tried a couple of days off the medication, but it didn't have any affect.
Monday (5/18), the school nurse called because he was having another headache and she commented that his right eye wasn't as reactive as the left. The nurse at the ped's office wanted us to just go to urgent care (I really think they assumed I was overreacting), but I felt more comfortable taking him to the ER. The ER doctor's noticed his coordination was off and that he was slurring his speech so they did a CT scan.
I started to get nervous when it was taking a while for them to come give us the results, and then my heart sank when three people walked in the room.
They found something on the CT scan....
Jacob was then admitted to the hospital. The next day they did an MRI, and several hours later we got the news that it was an inoperable brain tumor called a brain stem glioma, more specifically a Diffuse Intrinsic Pontine Glioma. This type of tumor is so rare, that there are only about 200 cases diagnosed each year.
Due to the diffuse nature of the cancer there are no surgical options, and current chemotherapies have been found to be ineffective. While radiation therapy does permit some relief of the symptoms, the benefits are short lived, and there are no known long term survivors once the tumor returns.
Jacob has been enrolled in a clinical trial at Cincinnati Children's Hospital. The trial involves radiation and the use of two chemo medications that have had sucess in adults with gliomas. Oddly enough, this clinical trial started just a week before Jacob was diagnosed.
So far Jacob has completed six weeks of radiation and four rounds of chemo. He has entered the maintenance phase of chemo, and will receive it every two weeks for the next year. Jacob had his Make a Wish Trip to DisneyWorld and Give Kids the World at the beginning of August, and also went to Alaska at the end of August.
Please pray that this combination of chemotherapy is what will finally beat these type of tumors.
My wonderful friend Jeannette Bredestege has set up a fund for Jacob at US Bank. If you'd like to contribute to help with the cost of Jacob's medical bills and care, just go to any US Bank and ask for the Jacob Matthew Taylor Medical Fund or you can donate through paypal: JacobMatthewTaylorFund@gmail.com
Jan 14, 2011 2:39am
It's hard to believe that in just a week it will be 10 months that he's been gone. In some ways it feels like it's been forever since I've hugged him, but at the same time it feels like it was just yesterday that he was here. I do know he's with me though, and still has his sense of humor. His favorite thing to do is wake me out of my sleep whenever there is something on the tv or music he wants me to hear. I figured this out the first time he did it after I fell asleep watching Food Network, and was jolted awake to find them doing a show on oysters in New Orleans.
If you remember, Jacob and I made the trip down there last February to attend his cancer buddy, Pirate Ben’s funeral. It was a sad reason to be down there, but at the same time he and I had so much fun and made so many memories that I will cherish forever. One of those memories was while we were eating at this seafood place down by Bourbon Street. Their “specialty” was oysters, and Jacob tried one and then tried talking me in to eating one but I refused. It was a joke between us from then on that I needed to try them, and I'd always tell him I wasn't eating something that had the consistency of snot. When I nearly jumped out of bed startled at 3 in the morning to find this show on the Food Network, I knew it was him.
I also know he has maintained his sense of humor by the numerous times I've found his football "cup" around the house. I would always yell at him to put that thing away in his drawer because he did what every 8/9 year old does and just left it where he was finished with it. The first few times I thought nothing of it, but it continues to happen and in different parts of the house. I can just hear him giggling every time I find it. A "sign" like that is just so Jacob.
Anyways, I didn't come here to just post about the various inside jokes he and I had, I wanted to share some exciting things going on in our world right now for those who may not know.
My mom and I have started a foundation in Jacob's memory in hopes of helping other families of children diagnosed with brain cancer. Thanks to a wonderful donation from Jacob's fellow skydiver Travis, we have a lawyer working on getting us an official 503(c)3 status, and hope to be helping families by late summer. The website for the foundation is www.TeamJacobFoundation.org. You can also follow us on Facebook at http://www.facebook.com/#!/pages/Team-Jacob-Foundation/100772943321128.
The other exciting news is I am part of the 2011 Class of 46 Mommas. If you saw Stand Up 2 Cancer when it was on back in September, you may have seen the group of 46 moms at the beginning who shaved their heads in honor/memory of their child with cancer. I am part of the group of 46 moms who will be shaving this year.
You may be wondering what the significance of 46 is? Every day, approximately 46 children are diagnosed with cancer. Us moms are shaving our heads by choice, because at some point in our lives we were mom to one of those 46 children who didn't have a choice - about losing their hair to radiation or chemo, about getting poked and prodded...who didn't have a choice about getting cancer.
On September 13, 2011, I will be traveling to Washington DC to join 45 other women as we shave our heads and bring awareness to childhood cancer. We are also doing this to help raise funds for the St. Baldrick’s Foundation, which provides money for research of childhood cancer. Many people have asked why we are doing this in September when it's just starting to get cold. September is significant because it's Childhood Cancer Awareness month, and September 13th is Childhood Cancer Awareness Day. Even though my head will be cold come fall, I can't think of a better time of year to do this and bring more awareness to childhood cancer.
Please visit my page on the 46 Mommas website and PLEASE consider making a donation to help me reach my goal (there is a link to my St. Baldrick's page where you can make a donation under my name) : http://46mommas.com/index.php?option=com_k2&view=item&id=269:tiffany-taylor&Itemid=163
Jacob's page has been visited over 90,000 times. If people donated just $2 each time they visited, that would be enough money to fund a clinical trial for childhood cancer. Even if you can't afford to donate, spreading the word about the 46 Mommas is worth millions! I have a Facebook page set up to keep people updated on my shave, so please like it and share with your friends:
I'm attaching the picture of Jacob from this time last year as we were on our way to see the Patriots play the Ravens in Boston. The Patriots were his favorite football team, and I'm so glad we were able to take him to Boston to see them play in person. Hopefully Brady does better this year than he did at the game we attended. Go Pats!!
I also wanted to send a huge thanks to someone I haven't ever properly thanked. Jen from Cakewrecks.com was such a huge supporter of Jacob and helped spread the word about his fight. She will always hold a special place in my heart for that! If you need a good laugh, visit cakewrecks.com and show some love! Thank you, Jen!!
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