#thetruth365

This is from Olivia's mother. Please read and share. This is just a slice of my friend Olivia goes through. "Children battling cancer is not fair! Watching my daughter fight for her life is not fair. Holding her in my arms as I sing her lullabies as she is anesthetized on the OR table with a room full of on lookers is not fair!!! Her not being able to start kindergarten with her peers is not fair. Losing her hair FOR THE SECOND TIME is not fair. Taking 14 gross tasting oral medications / supplements 3 times a day is not fair. Her speaking of her life "before" her treatments and "after" her treatment" as a way to separate the two drastically different realities is NOT OK! Having "tubies" dangling from her chest port 24/7, connected to a major artery in her heart is NOT OK!! Being constantly terrified of said "tubies" being pulled out is not ok. Her asking "how were my scans?" and understanding in a very fundamental way the severity of these scans is NOT ok. Her getting "schmeemo" (what we call chemo) every 3 weeks is not ok!! Pumping poison into a small child following a 17 year old protocol is NOT OK! Fighting a rare and drastically underfunded disease is not ok. Going through complete and total financial devastation due to fighting this disease is not ok. Splitting up families and tearing bonds apart due to emotional stress of battling childhood cancer is NOT OK!! Wondering if this is the last summer, birthday or holiday spent with our intact family of four is not ok. Worrying about every headache, sniffle, dizzy spell, ache and pain is not ok! Not being able to relate to families not battling pediatric cancer is NOT ok. Having to protect your precious bald headed and vulnerable child from the stares of ignorant strangers is NOT OK. Memorizing the medicinal stench of the pediatric oncology floor and not being able to smell it without being brought back to the first night we were admitted, all the while thinking this has all got to be a huge mistake, My child can't have cancer?! This was not fair!! Missing out on SO much of my younger child's life, continuously trying to re-bond and re establish trust with her is not fair. Having to stop nursing her so abruptly, (way before either of us was ready to stop) the day Olivia was diagnosed, this was not fair. Trying to memorize the sound of your child laughs, giggles, their voice when they call out your name is not ok. Taking SO many pictures and videos, as you tell yourself you are just documenting her journey to show her when she's grown (while secretly wondering if these are the last of the memories that will be permanently captured in time) is NOT ok. Trying to prefect your "brave face" for the public, family and friends so that they do not worry too much about your fragile state. Staying up until the wee hours of the night researching your child's disease, knowing the various factors that make her prognosis more or less favorable is not ok. Having all of this data memorized but continuing to research alternative therapies, as conventional ones have been exhausted is NOT OK!! Close friends and loved ones that you've meet on this battle field have had children that have succumbed to cancer, as you mourned for their loss, grieved for them from great distances away, not being able to attend funerals and "celebrations of life" as your kiddo is still in active treatment and you are unable to leave your child while your heart is being ripped apart is NOT OK!! Mentally planning your child's funeral instead of her next birthday is not ok. Wondering which horrifying option, if necessary would you choose, cremation or burial? Is not ok. Paying tax dollars while pediatric cancer only receives less than 4% of every dollar allocated for cancer funding IS NOT OK!!!!! Seeing happy bald headed kiddos skipping through hospital hallways (on commercials and billboards) instead of the stark reality of puke buckets, obsolete medications, frustrated oncologists and researchers IS NOT OK. Spending close to a year on the other side of the country seeking out the "best" treatment for your child's cancer, meanwhile missing home, family, friends, then being told by the "best" team that there is no hope AND to be chastised, scorned and reprimanded for quoting survivor statistics and pleading for a life line to save your child - IS NOT OK. Living so long at the Ronald McDonald House and becoming so close with the staff that they select your child to be featured on the cover of their magazine because she is forced to fight for her life. That is unfair. Restraining your terrified child in your arms as you attempt to hold back the tears streaming down your face, mentally screaming along with her, as a team of medical staff shove a feeding tube into her nose and down into her stomach, taping it to her face for the next 4 months. This is most definitely NOT OK. Watching your child whither and weaken and loose 40% of their body weight is not ok. Trying to distract your child from their hospital bed from the sounds of parents sobbing / wailing down the hall, as they have just lost their child to cancer. She innocently asks what's that sound mommy? I tell her it's just the night shift nurses being silly. After she falls asleep I get into the shower and sob and pray for that family I didn't know and for their child they will never get to hold again. THIS IS NOT RIGHT! From another hospital room during another lengthy stay I see a father punching the wall then collapse into a nearby chair. Someone trying to offer support spoke calmly but professionally, "She's in a better place" she tells him, "she was sick and now she is free of pain". He goes silent. I closed the door and tell Olivia one of the custodians dropped something in the hall and she giggles and wonders if they woke up any of the sick kids trying to get some rest. This world of childhood cancer is NOT OK!! Please get involved. Support a family directly of your choosing or please support Saint Baldrick's or Alex's Lemonade Stands. Proceeds of these charities go directly towards pediatric cancer research. Did you know that parents of these brave warriors are forced to shave their heads and sell lemonade to raise awareness and valuable funds to further pediatric cancer research?? And we call ourselves a "developed" nation?? ENOUGH IS ENOUGH. NOT OK. NOT OK."

It's time for us to discuss childhood cancer and get the facts out there to others so they know the truth. 46 children everyday are diagnosed with cancer in the United States 7 will die today as well. Childhood Cancer only gets 4% of the NHI's cancer research budget for all childhood cancers combined. The American Cancer Society constantly advertises kids in their relay for life ads yet they only donate a penny for each dollar raised to childhood cancer so 1% of their funds go to childhood cancer research what a scam. Rates of incidence of childhood cancer are not getting smaller they are increasing. It's a time we stand up and take a fight for the children with no voice. Photo credit to tristanpless on Instagram.

Please take a minute to watch this video. Because kids deserve #MoreThan4

This is the reality of the work I do for kids with cancer. It is not pretty, or cute, or sweet. It's terrible. But it matters, because the lives of innocent children matter. 4% of the entire cancer research budget goes to children. That's it. You want to do something about it? At the very least, watch and share this video. Be a voice for all the children we are losing every day. 

You speak up because it could be your beast, your lungs, your ovaries, your cervix. But it could be your child, and there is silence.