A special welcome to everyone to The Story Room......Hope and Courage. We meet Monday evenings, starting around 8:00 pm EST. A PAC2 member posts his/her story, and the rest of us can read and reply. The person "hosting" each week will stick around a bit to read and reply to your comments. The post will remain up all week for those who may not be with us on Monday evening, and comments will remain open, so feel free to leave a reply or message during the week. There are no rules in The Story Room. Please share whatever you want to share. Whether you are in the fight now, are off-treatment, have lost a child or even if the child you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time), you can come to this diary and process your story in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, please contact us at firstname.lastname@example.org - everyone is welcome. This is the schedule for the upcoming weeks, let us know if you would like to contribute.
August 22 - Melina McAlwee Brown
August 29 - Lisa Bender
September 5 - Monica Fochtman
September 12 - open
My old life ended with these words on September 1, 2004…
”You do know there is something abnormal on Levi’s CT, right?”
For a split second, I just knew the doctor was saying that to scare me, because I was overreacting. Then, cold dread and an unnamable fear started creeping from my stomach through my body. I literally couldn’t breathe. I looked down at my sleeping Levi, age 4 1/2, who had slept 18 straight hours the day before. He woke up, saw my tears and said “Don’t worry, Momma. Everything’s going to be ok”.
Diagnosis – medulloblastoma, high risk, due to metastasis on his spine. Surgery the next day left him mute, paralyzed, incontinent, drooling – the only thing he had left was the ability to scream. The automatic paper towel dispenser in his PICU room would send him into a screaming fit that I feared would never end. I couldn’t hold him for a week. Four months (four days before Christmas) before I heard his voice again. “Momma!” he said, with a proud, crooked little smile.
I signed treatment release forms that promised diminished intelligence, risks of secondary cancers, lack of spine growth that would cause a spider lack appearance (his arms and legs grow at a normal rate, while his spine stops at age four), and many, many nightmarish things.
My new life began on September 1, 2004. This life is filled with drugs called cyclophosphamide and topotecan, synthroid and humatrope, terms like 54 gy and neuropsych examinations. It is a life filled with fear, joy, anger, tears, laughs and hope.
I can’t “forget” that Levi had cancer. Telling me to get over it is like telling a veteran to forget they have been to war. I worry when Levi vomits or has a headache. I cry myself to sleep when he tells me he was picked last at school. I celebrate when he is invited to have a sleepover. I soak in his hugs and giggles for all my friends who have lost their children.
I worry about Levi’s brothers and sister and all they have been through. Siblings are the silent victims in this war. So are grandparents, aunts, uncles and cousins. I remember his 3 year old cousin visiting him in PICU saying “Levi still has a boo-boo?”
Levi’s treatment gave him lots of future “gifts”. Thyroid failure, growth hormone shots, IEP’s, fear of secondary cancers…. Not acceptable!
WE are the voices of our children. No one loves them like we do! We must fight for better treatments, more government funding for research, increased awareness at their schools of the long term effects of what they have been through – God willing that they get to even return to school!
I fight. I fight for Levi, I fight for your child, I fight for all children. Our voices MUST BE HEARD!