You should all be so proud. You helped us do this. Thank you for your continued love and support!

 

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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.

 

 

 

2 a.m. Insomnia Parties With A Raccoon and A Cat

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Ronan. Everyday normal things will no longer exist in my life again. Not even a trip to the grocery store, the car wash, the bank, etc… Even the littlest things are different. I’ve been keeping myself busy enough because my life depends on it. I could easily see myself sinking into a very depressed state of mind and not getting out of bed until Poppy is born. That is why it is so important to me to have most of my days, planned out. I no longer love the luxury of not having things to do. Because if I don’t have things to do, I just won’t do anything at all and that is not a good place for me to be.

 I went to see my OBGYN a couple of days ago, just for my 4 week standard check-up. As I said before, everything with your Poppy sister looks great, but I still sat and told Dr. Schwartz about how I made the ultrasound technician check for any type of mass in Poppy’s body. She sat with me for a good half an hour to discuss how I am doing, how I am feeling, how I am dealing with all of this, and how much I miss you. I know she did not have to do this. She is one of the busiest women on the planet, but I so appreciated her taking the time to talk to me about anything and everything. She told me she would send me back to get more in depth ultrasounds whenever I wanted, she would find any excuse to send me. We have decided my next one will be at 26 weeks. She told me had you had this at birth, it would have been so microscopic that nothing would have shown up. If it would have shown up as something bigger and abnormal, they would have seen it and told me. I don’t know if this made me feel better, but I appreciated her taking the time to talk about the questions I have. She is a great doctor. After I left there, my phone rang. It was Dr. Schwartz telling me that she just got the flu shot in and she was highly recommending that I get one. I told her I wasn’t going to. She told me about the study that just came out linking pregnant women and the flu, to autism. I talked with her a bit about how I really didn’t want to get it. I would rather not put something into my body if I don’t have to. She once again, told me she couldn’t make me, but she felt very strongly about it due to how much I’m in the public and traveling. I asked Stacy and Fernanda about it. They urged me to go. I asked your Mr. Sparkly Eyes. He told me to please go and get it done. Of course I listened. I went today. Remember how I said that nothing will ever be the same again? I cannot even get a flu shot without thinking of you. I’ll never forget all the “pokies,” we had to give you after your rounds of chemo. How much you hated them. How I would hold you and your daddy would give you the shot. Shot after shot after shot. How you would scream and cry and try to be brave, but you hated it so much. My shot didn’t hurt for me today. My shot hurt for you. I’m so sorry for all you had to go through. It was so not fair or right. Any of it.
Do you know what else I’ve gotten to do the past couple of days? I went with Stacy and Fernanda to shop for your Christmas Tree that we are putting up this weekend at PCH. Of course it is a Star Wars theme. We decided this year, to do it all after your favorite guy, Captain Rex. The entire tree is going to be blue and white. Fernanda came up with the brilliant idea to find an actual mannequin and dress him up like Captain Rex to look like he is playing next to the tree. We found a kid sized one to dress up. The girls asked if I still had your Captain Rex costume. I knew where it was, but I had not touched it since you wore it on our last Halloween together. They offered to buy a new one. I told them it was o.k. We could use your little one to put on the mannequin. They both asked if I was sure. I told them I was. I can be brave. I can do this. I went and got it. I inhaled it, hoping for it to smell like you. It didn’t. I set it out for Stacy to pick up to give to Fernanda to let her work her magic. She sent me a picture of it today. It took my breath away. The little mannequin dressed up like you, looked just like you did when you actually wore the costume. I must have sat and stared at that picture for a good five minutes. I cannot believe that this is my life. That I don’t have my own Captain Rex here with me anymore to protect me. I cannot believe a mannequin is wearing my dead child’s costume. I do these things for you. Because I know you would want it to be this way. If you can’t be here with me, I will honor you by bringing your little light everywhere that I can. Including a Children’s Hospital ward where we spent so much time.
I have not been sleeping well. My internal clock has been waking me up at about 2 a.m. for months now. Last night, when I was roaming around our house, I looked outside. I saw a cat in our driveway and right behind that, a big raccoon. I don’t think I’ve ever seen a raccoon in Arizona before. I sat and watched it. I tapped on our kitchen the window. It stopped and looked my way. It was weird and creepy and I was so sad when this morning when I didn’t have you to tell my story to. I told your brothers. They thought it was pretty cool. Liam of course tried to tell me it was just another cat. Such a little skeptic he is. My 2 a.m. witching hour can be fun, Ro! Just throw a few raccoons my way. I then went on Google to do some research on if cats and raccoons are friends. Turns out, they are not. That raccoon was very likely stalking the cat to eat it. The things you learn at 2 a.m. I am a wealth of knowledge in all things raccoon now. I am also very productive at 2 a.m.  I would give anything to have you here to cuddle up to because I can’t sleep. I would give anything not to be waking up because I don’t have you here to cuddle up to. I fucking hate 2 a.m. 2 a.m. blows. I usually fall back asleep around 5 a.m. I need to find a hobby during my witching hours. Maybe I’ll start baking.
I saw your Sparky yesterday. He asked me why I looked so perplexed. I just told him I had a lot going on in my head, like always. We sat and caught up. I was having a really, really sad day but didn’t want to let him in on that. So we talked a lot about your foundation and a few other top-secret things I have in the works. I was wearing my most favorite Frye Cowboy boots that I have had for about 7 years. He made fun of them and made me laugh. I told him they were my favorite boots ever. He said he knew. I left there, feeling like my heart was going to explode from the pain of missing you. I attempted to drive home but had to pull over mid way so I could bang my head against my steering wheel and cry. I called your Sparkly up.
Me: “Do you think I’ll ever stop being so sad?”
Him: “Darling. Come on. Your boots were not that ugly.”
Not even his witty remark made me giggle. It was quiet. I just sat and cried into the phone.
Him: “I do. I honestly do. Not right now, but someday you won’t be this sad.”
Me: “I’m so sad all the time. Nothing helps. I miss him so much.”
Him: “I know you do.”
I sat and cried into the phone while he just listened.
Him: “Are you home now? Please get home. I will speak with you tomorrow.”
Me: “O.k.” I’m almost home.”
I got home to our empty house. I laid on our bed and cried for a long time. My face seems to be constantly wet these days. I wonder if my never-ending tears are because of how much I miss you, or all of my hormones due to being pregnant or a combination of everything. I used to be able to go days without crying. Now I’m crying every single day, sometimes every single hour. At least my anger seems to be under control. I don’t want to sit and punch things or hurt myself. I just want to sit and cry, so I do.
I’ve got to go now, Ro. Lots to do but all I really want to do is be busy taking care of you. I’m sorry. I miss you. I love you. I hope you are safe.
xoxo
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.
This is the Captain Rex that will go under your tree at PCH this year. Your costume. I only wish it were your body wearing it.