I just want to take a minute on here and say thank you to all of you. After being away for the summer, I came home to piles and piles of mail, gifts for Poppy, checks for the foundation, and I even got glitter bombed after opening up a box. You all make me smile, laugh, and cry on a daily basis and although I can’t write each and every one of you thank you’s… please know that I am doing it here, and I say thank you to you all about 100 times a day in my head.
There are so many amazing things going on. If you have a second, please read about what the amazing Jim Fry is doing below.
If you have the means, please donate to his fundraiser. Every little cent helps. If you don’t have the means, please spread the word for us. What Jim is doing is inspiring and so moving. Even with all of his determination, he knows it is nothing compared to what these kids go through and that is the most moving thing of all.
I feel a movement happening in the world. One that I am so touched by. I’ve literally received thousands and thousands of emails and letters from not only adults everywhere, but kids as well. Kids who I swear are going to change this world of pediatric cancer. They are holding fundraisers for Ronan, starting clubs at their schools, writing reports about the lack of awareness out there, doing amazing school projects about Ronan’s foundation, writing songs for him, doing their birthday parties and instead of gifts they are asking for donations instead, etc…. I live for the youth of America. I live for these kids who are going to grow up to do amazing things all because of a little boy they learned about because he will never get the chance. And they know that is so wrong and how it could happen to anyone; even them. They aren’t scared and running the other way. They are being proactive about this very broken world and to me, the mother of a child who died from this… that means everything.
I got sent a little poem from a 13-year-old girl named Eugenia. She had a class assignment and it was to describe a room and explain how the objects in the room say things about the person living in it. She chose to do it about my bedroom. The poem is below.
The light on at night illuminates how she doesn’t sleep well thinking about how she feels it’s her fault
The athletic shoes next to the door jog the idea that she runs to clear her mind
The pictures of her son all over the room visualize how they were close and that she misses him like crazy
His little bald head in the photos discloses that his life was a hard one even though it was short
His toys on the floor play out his innocence; how he was taken too young at 3 years old
The boxes of tissues whisper about how she spends every day crying over him
The spot on her bed between her and her husband portrays that he would sleep in their bed
The urn on her night stand murmurs that they keep him close and never let him go
The necklace around her neck filled with some of his ashes witnesses how she needs to keep him close to survive
The letters of apologies opened and unopened spell out how many loved ones he had
The bracelets with his name on them tie up the fact that they are trying to spread the word of this horrible disease
The computer on the floor next to the bed reminds us how she needs her blog to express her emotions of grief and pain and tell his story
The sonogram under the pillow wet with tears of joy and despair portraits how her new baby will be a girl; he always said he wanted a little sister
The deep sad look in her eyes sends the message to us that even on the happiest of days she will always be sad because her life is incomplete without him.
For Maya and Ro. Always for Ro.
This 13-year-old gets me better than most adults. As I read the words above, the tears just poured to the floor. I thought it was so heartfelt and beautiful. I am so moved by this younger generation of kids and the way they are helping move these mountains. Thank you, E. Don’t let anyone every dull your sparkle;) You are making this world a better place.
I’ve got to run now and work on this book.
I hope you all are well and please know that I know, that I would not be where I am today, without you. Thank you for helping me to fight for my little boy so much so that his name will never get lost.
We are consistently amazed by how much support we get from adults who have fought cancer, and say, “kids should never have to go through this.” We want to show the White House that raising awareness for kids’ cancer isn’t just important to the parents’ of our littlest cancer fighters – it is important to ALL OF US.
How you can help:
The Ronan Thompson Foundation
I’m [NAME]. I am a [type] cancer survivor. But I’m asking you to shine a light on pediatric cancer, the #1 killer of our kids. Mr. President, light the White House GOLD this September.
Please sign the petition:
RESEARCHERS TO DEVELOP ALK-BASED IMMUNOTHERAPY FOR NEUROBLASTOMA
The Ronan Thompson Foundation and Solving Kids’ Cancer award $100,000 grant to fund new therapeutic to treat children with neuroblastoma
New York, New York – November 30, 2012 – The Ronan Thompson Foundation and Solving Kids’ Cancer have announced a charity partnership to jointly sponsor breakthrough clinical research of a new therapeutic antibody for neuroblastoma. Together, they will award $100,000 to the Children’s Hospital of Philadelphia (CHOP) with the goal of improving survival for children with neuroblastoma, a deadly cancer that usually strikes infants and preschoolers.
This promising research will be conducted by CHOP physician-scientist Yael Mosse, M.D., who garnered international attention for her discovery of a mutation in the ALK (anaplastic lymphoma kinase) gene that occurs in some neuroblastomas. Changes, or mutations, in the ALK gene play a role in the growth of cancer cells and has also been linked to lung cancer and lymphoma. Researchers believe that an ALK antibody will directly target the tumor cells and also help the immune system to attack the cancer, reducing the risk of a future recurrence. The plan is to use the ALK monoclonal antibody in combination with an ALK inhibitor to benefit more patients. The ALK mutation only occurs in about 10 percent of neuroblastomas, but ALK expression is found on 90 percent of neuroblastomas. Recent early-phase research conducted in the lab showed that an antibody targeting ALK expression kills neuroblastoma cells.
“By working together, we can make the world a better place for children and their families who have been affected by neuroblastoma by bringing together the best doctors, research and treatments,” said Maya Thompson, the Founder of the Ronan Thompson Foundation. “We are very excited to be partnering with Solving Kid’s Cancer in supporting the work of Dr. Yael Mosse and her colleagues at CHOP to help find a cure for this disease.”
Work is now under way with an industry partner to generate and screen potential anti-ALK antibodies with the goal of commercial production. The Ronan Thompson Foundation and Solving Kids’ Cancer will commit the $100,000 joint funding to develop the antibody and required testing to bring this promising new treatment option to the clinic for children. The hope is that a small-scale clinical trial will quickly prove the therapy’s safety and effectiveness for use in trials throughout the U.S. and Europe.
“This collaboration is an example of pediatric cancer charities coming together to quickly bring the best, most innovative treatments to our children and ultimately improve survival for this deadly pediatric cancer,” said Scott Kennedy, the Executive Director of Solving Kids’ Cancer.
Ro baby. I am going to try to write tonight; but I am tired. I will do my best because I miss you so very much and my mind is anything but still. Today started out o.k. Waking up knowing our reality, is never easy to do. I got up and started working on some things around the house. Organizing things. Very fun. I can tell things like this are going to become an obsession for me. Things that I can control, are very important to me now. Things were so out of control, for so very long, now it is as if I am becoming obsessed with the things I can control. Such as how much I exercise, how much I eat or don’t eat, the perfectly put away laundry….. I cannot wait to start project organization on my closet tomorrow. The once, carefree, chaotic life that we used to live, seems like a fairytale. It is no longer here. Oh, how I long for the chaos that you created. You used to leave my head spinning, but in such a good way. I could never keep up with you and your craziness. So, I just gave in and joined you instead. We were such a perfect match. You were the best little partner in crime. I miss you so much. I don’t like not having a partner in crime anymore. Trying to keep this up, without you, is so boring and dull. And just plain sad.
Ro baby. I didn’t finish that last night. I had to snuggle up with Quinn instead who was sobbing about how badly he misses you. I held him tight for a long time, in the bottom bunk of his bed. I didn’t know what to do; so I just held him and tried to comfort him. I kept telling him how sorry I was, how unfair all of this was, how much I loved him, how strong of a family we are…..but my words were of no comfort to him. I gave in and told him to let it all out, how it was good to cry about you. It ended up being too much, so I in turn, just gave in and cried with him. As soon as he noticed my tears, he sat up and said the words that he’s said to me a thousand times now….”You o.k. Mom?” I wiped my tears away and told him I would be o.k. if he was going to be o.k. He said that he would and we decided to climb up to the top of Liam’s bunk bed to sleep. Liam was snuggled in bed with your Daddy. I fell into another night of restless of sleep, with Quinn by my side.
The weekend is over. It was all pretty much a blur. We had friends over, ran errands, did things around the house, went Inferno Hiking a couple of times….. I had breakfast with my besties this morning. Me and my 3 dolls. Not many laughs, but more tears. It is o.k. though. I know there will come a time when we will laugh like we used to. It’s the friends that stick by your side, during the toughest of times; who you will be with until the end. I’m so lucky to have the girls’ that I do as they are truly the best of the best. I know I say this all of the time, but I wouldn’t be standing here, without them. My sisters for life.
I went to the grocery store tonight. Alone. I hate the grocery store so much. I needed to get things for the week. Once I stepped in the store, the panic took over. My head started spinning and I could not focus on a thing. I filled my cart with fruits, veggies, things to pack for your brothers lunches. I did not have a list, as I thought I could remember what I needed. I used to be so good at that. I knew there was something that I really needed to get at the store. The one thing that I could not forget. I had spent much of the day, reminding myself, over and over, what I needed to get. Once I was at the store, I could not remember what that one thing was; to save my life. I knew it was something to do with toiletries. I walked up and down the aisles, trying to remember what in the fuck it was that I needed. It wasn’t shampoo, soap, face wash, Q-tips…… I was about to burst into tears. Why is my brain not working anymore? This is so not fair. Why are you dead? You are dead and my memory is gone. I used to have a memory like an elephant. Almost photogenic. Just as the tears started to form, I turned down the toothpaste aisle. There it was, Ro! Dental Floss! I’ve never been so happy to see goddamn dental floss in my LIFE!
I made the mistake of going down the toy aisle. There it was. A Star Wars action figure that we never had. A new one. NONONONONONO. I picked it up. I started talking out loud, repeating, “Guy’s Helmet,” over and over just like you used to call them. I took a picture of it. I almost bought it. I had to set that toy down tonight and just walk away. I had to walk away from knowing that I couldn’t buy you that toy tonight and bring it home to you. You would have been so excited and I could almost feel you wrapping your arms around my neck and giving me one of your best kisses. I cannot believe that I cannot have that anymore.
Babydoll. I’ve got to say goodnight. Your daddy is sad and I just don’t know what to do with all of this. Everybody is sad. How can I fix everyone else around me when I am so badly shattered that the simple act of connecting, being attentive, loving, and compassionate to those closest to me, often leaves me locked in a bathroom, lights off, puking my guts out.
Thanks, Fuckwad Cancer for taking my baby away from all of us. I HATE YOU.
G’nite Ro. My babydoll. My “not spicy,” monkey, my blue-eyed boy. I love you to the moon and back.
And P.S. WTF is this thing? It could be the most genius invention, EVER. Way better than the snuggie. Can somebody get me one of these? I would like to put it on and wear it for the rest of my LIFE. Stupid life. But this so made me crack up.