Awareness and Our Silver Lining

Did you know that the gold ribbon is the symbol for Pediatric Cancer? (grey is for brain cancer). I think we all know the pink one is for breast cancer. There is a reason for this. Funding. I always just assumed all cancer research was funded equally. I never thought to look into it. I never had a more personal reason to care... until now. 

Unacceptable Statistics:

The National Cancer Institute's budget is 4.6 billion dollars. 

Breast cancer research receives 12%, prostate cancer 7%, and all major pediatric cancers combined receive less than 3%!

It is estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes. Childhood cancer as a whole receives about $130 million/year in funding. At that rate, it will take 100 years to develop these drugs and 250,000 children will die.

Childhood cancer research is woefully underfunded compared to adult cancers. For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents.

Every day 9 children in the US are diagnosed with a brain tumor.  Brain tumors are the leading cause of cancer death from childhood cancer. There are more than 120 different types of brain tumors, making effective treatment very complicated.

At this time, brain cancer research is hugely underfunded and 

THE PUBLIC REMAINS LARGELY UNAWARE 

of the magnitude of this disease.

Tell people what you know about Pediatric Cancer. Maybe one day this ribbon will be as recognized as the pink ribbon and no other children will have to endure this.

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There are so many thoughts going through my mind right now that I am drawn to my computer. I need to write them down and sort them out.

Positives to take away from this situation:

Community support! We never expected things to be at the level that they have come to.  The community outreach, fundraisers, Love & support from our congregation, volunteers, Dine and Donates, bake sales, meals, prayers, cards, thoughtfulness, selflessness are all above and beyond anything we could have ever imagined. Our community has all taken us under their wings and shown us a love and sense of spirit that we can never forget.  You all have helped hold us up on the toughest of days. You give us strength to fight the fight as a family which cannot be valued enough.

We caught it early! Statistically, 80% of all pediatric cancer isn't detected until it's already in stage 3 or 4. I know my child and I have the support of an amazing pediatrician who never underestimates the power behind mothers intuition. Dr. Yamaguchi, THANK YOU again for listening to me and going along with my gut feeling. You have helped to give Kayla a great chance in this long long battle. 

Having a surgeon so skilled, that he was able to fully remove the tumor. It was only 1/4 of an inch or less away from her brain stem. You can imagine the skill that was required. We feel fortunate there to have had the connection to get us in with Dr. Gupta. Thank you Patty! and Thank you Dr. G. 

The awareness this experience has given us into the world of pediatric cancer. The people and families involved from those that work for St. Jude and those being treated here. Everyone involved is amazing and will be sorely missed when we leave this place. That is a feeling I never expected. Bittersweet. NOT sad that my baby will be finishing Radiation, but sad because we have made some amazing friends there. We will truly miss their kindness, humor, and love in one of the toughest situations anyone can go through. 

Our families ability to be together during all of this is of the utmost importance. We are one and draw our strengths as well as cover each others weaknesses to form a spirit that cannot be shaken or broken. This cannot be taken for granted as it is the most important aspect of all. Love will get us through it. Faith will get us through it. God will get us through it. 

Kayla's strength. The courage she has to stay strong during all of the pokes, pricks, sedations, physical therapy,  and bandage changes. Watching her miss her friends. The pain she is now feeling realizing just how long we will be here. The amazing amount of understanding she has to this horrific situation to which she has been dealt.  Watching her eyes and expressions as she learns about cells, chemo, beams of invisible light hitting her brain and spine. Catching her expression when we explained that some people are here again. That this isn't their first battle against cancer. Watching as she pulls out clumps of hair. Seeing her noticing the tiny dots that have been tattoo'd onto her body. Giving her anti nausea medication 3 times a day, everyday. Watching as our medicine cabinet becomes full. Even when the days are long and she is exhausted, she still tries her best to continue to fight hard.  She says her prayers every night. She continues to keep us all strong.