Day 5 of pediatric awareness month, September 5th. And I am reminded of innocence lost in my “On This Day” reminders. So many firsts will not happen for my daughter. So many life lessons learned way too young for a 7 year old. #NoMoreLooseTooths #NoMoreFirstAnything DIPG stole her innocence. Lack of funding stole our child. Lack of awareness delayed her diagnosis. #NoMoreExcuses #MoreThanFour #GoGoldInSeptemberForPediatricAwareness NOT OK #ACS #NCI You failed our children with our tax dollars! #Angry is an understatement! #PleaseShareKatherinesStory #KatherineTheBrave #DIPG
I am lost today. September 3rd, day 3 of Pediatric Cancer Awareness month. I am taken back today to the day Katherine was diagnosed. This is somewhat forced upon me, due to a recent situation I’m dealing with, but it’s real, and it’s raw, and it’s tearing me up inside.
Right now a beautiful young child is sitting in a hospital NICU, and has just been told that he has cancer. One day he was feeling perfectly normal, and the next day he is in agony and unable to walk. He is scared, worried about his mother, and thinks he is going to die. He’s probably wondering if he’s different. He’s worried about looking strange. He thinks life will never be the same again. He’s right… His mothers entire world has changed. She feels like a ghost surrounded by lab coats. No one can comfort her.
I know exactly how she feels. I was her. I can’t remove myself from this experience, because I was this experience. I can’t just send my love, and sympathy, and hope for the best. I know how in some cases, such as ours, the best doesn’t happen. I do believe in miracles though, and if I could have one right now I would ask for it, even though Katie did not get one. This is happening right now. And it will happen 46 more times today in a hospital near you.
We need to wake up. We need to make more people aware. We need to take away the excuse of, “I had no idea.” This mama knew better. Being very close to Katherine’s story, she demanded an MRI, after being told everything was fine, and just go home. That MRI discovered a cancer so big that her son may never walk again. Within hours his basic functions started going. But… He may live, because she was fierce and would not take excuses! Awareness saves lives.
So let’s spread some damn awareness, and save some children’s lives! Please share this message, and please copy and paste this statistic! Watch the eyes raise, and the minds focus. ***In 6 years we have created 77 new drugs for adult cancers. 6 years… And in 77 years, we have created 3 for pediatric cancers. 77 years… Some pediatric cancers are still incurable. These children are told to go home, and die. My 7 years old daughter Katherine was told to go home and die. And she did.*** (drops mic)
September 2nd, day two of Pediatric Cancer Awareness month, #GoGold, and oh the thoughts going through my head. My precious 7 year old child is gone. On June 6th of this year she died in my arms, after I asked her to let go, as I changed my mind and begged for her to stay with me, and then begged her to be pain free and go again…
So I’m left here to ask: Why didn’t I know about pediatric cancers and their lack of funding before my Katherine was diagnosed with cancer? Why didn’t we know that some cancers, as Katherine’s, have no survival rate, and that children are just expected to go home and die? Why didn’t we know that cancer kills more than 2,500 children in our country every year. We weren’t aware that over 13,500 kids will be diagnosed with cancer over the next 365 days, right along with us? Who knew that no government funding means that these children sit and wait to take poisons that don’t work, and receive treatments which are more than 35 years old, and with little survival success rates. These children WILL die. I could have never guessed that the NCI controls BILLIONS of dollars in funding but will NOT give it to us!!! I was oblivious.
Well now I know. And so do you. Are we mad yet???
This was my daughter. Several days after she passed away in my arms. Surrounded by friends and family. She is laying on a cold metal table, in a mortuary. She has her favorite princess blanket draped over her body. This is pediatric cancer. This is #DIPG. This isn’t an adult. She didn’t live a full life. She didn’t even live a partial life. She lived 7 years. She was given no chance. She deserved more. We were told she WOULD die. And that she did. She died. She gasped for her last breathe, in no different fashion than an elderly patient passing of natural causes and old age. At 7 years old. And we died too.
Please share our daughters story. Please share so that others are aware. So that at some point in our lives other kids hopefully do not have to suffer the same fate. So that the NCI and the ACS have to pay attention. So that our government realizes that their focus, and their priorities, are mute compared to the children dying every day right in front of our eyes, in this country. Dying, in our arms. In my arms…
I’m so sorry Katherine. I miss you. I’ll fight until I die for people to stop this insanity and do something about this. #LovesAndkisses
Tori, Alissa, CiÅra, and I are in line at Jamba Juice this weekend, we order, and she asks us what name it’s under. I say Jaime. We wait for our drinks, and the the guy calls out Katie. We all look at each other. Yup… They are our drinks. Alissa says, “You must have said Katie…” I said no way. I would have remembered that… Somehow, on Sunday, I got through an entire day of school clothes shopping without a problem. I could hardly walk on Saturday. Ended up in urgent care. I could hardly walk Monday. Ended up needing help into and out of the car. I think I know how I got through that day. Thank you my lovely Katherine. We miss you so much! #KatherineTheBrave #DIPG #Peacock #GoGold
September is childhood cancer awareness month. It’s the one month put aside to recognize our littlest cancer warriors. Will you change your profile pic and GoGold for our Katherine this September? Will you share her picture and ask others to GoGold for our kids suffering, or who have passed, from cancer? Katherine fought so hard for 12 months, with a cancer that many had not heard of until she was diagnosed. Let’s make people ask the the questions needing to be asked about cancer. Let’s make more people aware. Please help us. #katherinethebrave #dipg #GoGold