Hope For A Cure

Something has been on my heart to share with everyone..We needed time. Grieving isn't a process I have ever truly allowed myself to have. So I am embracing the cheese grater on the inside moments. I sometimes cry until I can't cry anymore. I know my Angel is with me. I know he is playing with Legos and Heaven and he isn't in PAIN anymore. However I have a permanent crater in my heart... I realized Dylan would want mom out sharing Jesus's Love and being true to who I am called to be. I am not here to win Kudos from Man.or to do what they think is right...I am here to Glorify the Lord and Spread his love...

About a week before we went to Lego Land, we knew we didn't have long with our little guy. Our Dr.Partap(the most incredible Peds Doctor) told my husband two days before our trip about a doctor who specifically studies DIPG tumors. Would we consider when Dylan passed if we would donate his tumor. Josh talked to me that day..He said "babe, this is the only way we may be able to help another child, another family not have to experience what we are going though."

God had already been working on me though..a couple days earlier. I was researching like a mad woman. I was going to find the answer, the cure for my son. I ran into a news clip on youtube. Seriously social networking rocks. Her name is Danah Jewett. I am honored now to be in contact with her. Looking forward to meeting her very soon. Her son Dylan Jewett battled the same monster my Dylan did just a couple of years ago. I am posting the video clip I watched. http://youtu.be/pdFfWhQ9964 You can find Danah on facebook. She also started a facebook awareness page.. Fighting to Cure DIPG.

I wasn't ready to make a decision for that before our make a wish. I knew when we got back we had our final appointment with Doctor Partap. I showed my husband the same video clip when we were in San Diego at our resort. He said he knew what he wanted to do, and so did I.

We got home from the most incredible family trip ever! Made our final stop at LPCH. We meet with all of the Doctors and told them that we would like to donate our Dylan's tumor. I am so thankful that we had an opportunity to do this. It's not a decision any parent should have to make. That's why we decided to. It's horrible to lose your child. Then to think this beast is winning...NO..we will find a cure together.

Their have been a few families who have donated their angels tumor. I Want to thank you. Praying that we have breakthroughs and and new doors open for these incredible Doctors!

Thank you for your continued prayers, love, and support. It's been such an incredible outpouring of love. Make it an incredible day.

Broken/Spreading Awareness

Today marks 20 days since my sweet boy went to Heaven...I wish I could write you some uplifting message...I am completely broken. I have good moments Praise GOd! It's such a roller coaster.. Plus I think whoever is running this roller coaster took a break. lol We have moved..Good thing for the family. Everything I know is the four of us...Now there is three of us.. Man I can't even explain all that has been going on. I will start writing regularly next week. My husband should be heading back to work in the next week or two..  UGGHH.. I know Dylan is better...I am so thankful for that. I mean the last couple of days of DJ's life I was praying for Papa to take him home quickly... He did...our answered prayers aren't always what our will wants... I trust his Gods  plan completely but I don't have to like them every moment.  I have't been blogging because I know my mind is a whirlwind...  I just know it's bouncing around. Just like this;) So when I am able, I will share the last month with you...

This month is CHILDHOOD CANCER AWARENESS month...Please join us. If we can all come together we can make a difference. So please join us...Help these beautiful babies!! TURN FACEBOOK YELLOW THIS MONTH =) Thank you!!

Diffuse Intrinsic Pontine Glioma (DIPG)

A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
Source: The American Brain Tumor Association

The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.

The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
Source: St Jude Childrens Research Hospital

In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. The cure starts now...
Source: The Cure Starts Now

We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer. The Children's Oncology Group (COG) continues to conduct epidemiology, cytogenetic, and microbiology studies in their quest for answers.

Funding for pediatric brain tumor research is critical since treatments discovered for adult brain tumors may not be appropriate for children. Pediatric cancer research has been important in understanding the basic biology of cancer, treating adults with cancer and providing principles of therapy and advances for other diseases of children and adults. For example, chemotherapy was first shown to be effective in curing children with cancer.

In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining. (we can change this!!!) We can make a difference. It breaks my heart that funding is very minimal for a monster that gives these kids a death sentence.

 We as TEAM DYLAN FRICK will spread awareness and raise money for research. I can't express how thankful we are for each and everyone of you. Thank you again for you continued prayer, support, love, and financial support. It has blessed us with time that was priceless =) Thank you for being part of our journey.