Way to go, Jakieboy!!!

Jake after coming down the water slide at Camp CoHoLo - July 2008


Welcome to Jacob's Web Page! Jacob is 11 years old and was diagnosed with Ewings Sarcoma of his skull (temporal bone)on Feb 1, 2003. In January of 2003, Jake started having mild headaches 2-3 times a week. We made an appointment with our pediatrician and he sent us for an MRI (thanks Dr. Harrison!). The MRI showed a lemon size tumor in his head, smashing his cerebellum. Jake's tumor was hypervascular - there was no way to biopsy it and there were doubts that it could be removed surgically without Jake bleeding to death. With the work of our neurosurgeon, Dr. Hellbusch, consulting docs around the country, it was decided to do an Embolization Surgery and then try and remove the tumor. At that time the consensus was that his tumor was probably a benign brain tumor with the small possiblity of it being a sarcoma. After the Embolization surgery done at the University of Iowa by Dr. Chaloupka, we were ambulanced back to Omaha Children's Hospital where Jake's tumor was almost completely removed in a miracle surgery in which he lost 8 units of blood (about 3 times his total blood volume) on January 28th. Once the tumor was removed, our greatest fear was realized when pathology showed the tumor to be Ewing's Sarcoma - a highly malignant bone tumor that rarely occurs in the skull. Jake completed 14 rounds of chemotherapy (at Children's) and 5 and a half weeks of radiation (IMRT - at the Univ. Of Nebraska Medical Center) in which he suffered a 3rd degree burn. His treatment ended in December of 2003. During his routine scans done on Sept 22nd, 2005 evidence of new tumor was seen, and Jake had a mastoidectomy to determine what the abnormality was. Thankfully, pathology reports showed it to be scar tissue from radiation! Scans done in December 2007 showed no evidence of disease and expected post surgical and radiation abnormalities. We will do scans again in June of 2008. Jake has permanent hair loss from radiation and some trouble with walking and running from the chemo, but overall he is doing great! We have received such unbelievable help and support from so many - thank you - you are a huge part of why Jake is doing so well!
Love, Steve (Dad), Kellie (Mom), Brandon (9 year old brother), Benny (4 year old Brother) and the amazing
Jacob Beresh! :~)

Other children dear to our hearts (More site listed below under links):

Angel Lizzie (1992-2006) Hepatablastoma

Joshua Larson (7) with relapsed Pleuropulmonary Blastoma-now back in remission!!!


Angel Tanner(1998-2007)Ewing's Sarcoma

Angel Brant (1998-2005) Ependymoma.

Angel Benjamin (1997-2005) Medulloblastoma

Journal

Friday, August 8, 2008 2:54 PM CDT

**Update on August 15th - Please keep the Carrico family in your prayers. We have been internet friends with this family for many years and their son Jace is experiencing tumor progression and pain. Please visit his site and give some encouraging words. (ia/jacecarrico)***

Hello! New pics on the photo page. Oh how we love the picture above from this year's Camp CoHoLo! That 4x6 piece of paper seems to tell Jake's entire story and all the emotion that goes with it in a way that words never could. The first time we saw it, Steve and I both just stared and stared. It's just plain awesome!

We just got back from a trip across Nebraska. We went 1000 miles in 4 days and it was actually a lot of fun! We headed to McCook to see my Great-Aunt Nelda, then we drove up to Lake McConnahay (sp?) and to Sidney to see my Great-Uncle Benny. While we were in Sidney, the Cheyenne County Fair was going on, so we got to partake in some small town fun! We did the rides, a truck and tractor pull, a demolition derby and the boys participated in an egg toss too. We also drove out to see Chimney Rock, The Scott's Bluff National Monument and Jail and Courthouse rocks. What amazing country it is out in the panhandle of Nebraska! All this prairie and then these huge rocks seemingly coming out of nowhere. The sunsets and huge sky out there were wonderful. We learned so much about the pioneers and the Oregon Trail. We are a family that soaks up the history lessons, so we loved it all. On the way back, we stopped in Kearney and went through the Arch too. It really was a fun trip.

School starts next week! Jake had his middle school orientation and got his locker and schedule. He is really excited about 6th grade. Brandon will be a 4th grader and Ben is excited to go to preschool again! Brandon is playing flag football this fall with Steve as the coach and Jake is playing baseball. Add in all the Nebraska games and it will make for a very busy season. We are excited for Husker season to start this year and the first game is coming up at the end of the month. Go Huskers!

Congress passed the Conquer Childhood Cancer Act and President Bush signed it in to law! HUGE success for childhood cancer. It ensures that the little money that is designated for childhood cancer research will actually be awarded instead of being vulnerable to cuts. Thanks and congrats to all the families that have worked so hard in talking to members of congress to get the bill passed.

September is Childhood Cancer Awareness Month, and I wanted to share one of my favorite videos on YouTube about childhood cancer. I love the song that goes with it and it's such a wonderful tribute to all of childhood cancer's children. Childhood Cancer Video

All is well here and we couldn't be more thankful. We are coming up on the anniversary of Tanner Lusk's death and it's just so sad not having her here. Lizzie's anniversary is coming up too. Beautiful kids gone way too soon. Please keep them and the families of other angel children in your prayers. Please keep the kids and families that are still in the fight and those that are in remission to stay forever too.

We are so thankful for how well Jake is doing, but never lose sight of the pain and suffering that goes on around us. All of us have pain and suffering in our lives, whether it's from disease, accidents, economics or crime. Life can just be plain hard and we all have our battles. We have to live life in the present moment as things can change so quickly. Whatever you worry about now may never happen or something worse could happen or something better. You have no control, so just give it up and live it up! Life really is what you make it. So make it a good day and love up those kiddos!

Thanks so much for coming to check on us,
Kellie, Steve, Jake, Brandon and Benny

Read Journal History

Hospital Information:

Home!!!
Omaha, Nebraska

Links:

E-mail Author: scbkab@cox.net

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 368867 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.