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.
There is a great event coming up this Saturday. It’s the First Annual Life Rocks Concert by Bret Michaels. Please buy tickets if you are in AZ and can come. It is not only going to be a great event, but a portion of the proceeds go for great causes, childhood cancer included. Love this man! He is doing really amazing things for others!
Ronan. Miss Macy is gone. We had a busy, busy day yesterday. We left the house around 8:30 a.m. and didn’t get home until about 8:30 p.m. We had a little breakfast out, some errands to run, and I had an ultrasound appointment as well. I was so excited to take Macy with me as she has never been to one before. I asked Fernanda and Stacy if they wanted to come as well. They both jumped at the chance to see your little Poppy sister on the big screen. I was so nervous before the ultrasound. I think I made your Macy nervous too. About 10 minutes before we got there, I started chanting, “Please still be a girl, please still be a girl…” over and over again. You know it doesn’t really matter to me, because of course a healthy baby is the most important thing… but it kind of does matter to me. Only really because of how badly you wanted a little sister. And I question myself a lot about having another boy and I wonder if I would compare him to you. I know it’s not fair, but I worry about doing that if I were indeed having another boy. I found out super early that this Poppy was a girl. At 13 weeks. So you know, there is always that chance that the early ultrasound could be wrong. We arrived at the ultrasound place and were soon taken back into the room. The technician started going over everything from head to toe. She asked if I knew what I was having and I told her I was told very early on it was a girl. We all waited for her to check Poppy’s parts out again to confirm she really is a baby girl. The technician showed us on the screen in between her little legs. No penis in sight! Confirmation that this is indeed a baby girl. You should have heard the way all of my friends were cheering and clapping. I felt like we were at a sporting event! It made me laugh and I let out a big sigh of relief. Next came the question I knew I had to ask. “If she had a mass in her stomach, you would be able to see it, right?” I almost got those words out, without becoming hysterical. Almost. The tech asked me why I was asking that question. I told her a little about you. I could tell she was trying to best to stay composed after I told her what had happened. She reached over and got me the worlds biggest kleenex to wipe my face which was covered in tears. She told me that she would be able to see a mass and if she saw something, she wouldn’t let me walk out the door without talking to someone. She asked who my OBGYN was and told me that because of what we had gone through, that she was sure she would let me come back to get another in-depth ultrasound later on in my pregnancy just to make sure nothing was there. I wonder about that all the time, with you. If you had this since birth and if I would have known to ask on an ultrasound, would somebody have caught it? Do they catch these things, early on, without people asking about it? I don’t know the answer to that. All I know is I know to take every fucking precaution possible which now means asking about a mass on an ultrasound while Poppy is still in the womb. The tech assured me that everything with your Poppy sister looked perfect. I can’t get over how much I think she already looks like you.
After the Poppy party ultrasound, we all went to grab some chips and salsa. I was quiet and exhausted during our little lunch. It’s amazing how much things like getting a routine ultrasound wipe me out due to all the emotions that now come with it. I listened to my girls chatter about and floated in and out of their conversation, but I was mostly lost in thinking about you and missing you to the core of my very soul. I was also trying to process that this is all really real, baby girl included. Sometimes everything still feels like a dream/nightmare that I cannot wake up from. I had promised your brothers a bike ride after school. That idea was squashed when all of my mother hens stepped in and told me that I indeed should not be riding a bike at this point. “What if you fall, Maya?” No, no, no bike ride!” Fernanda put her foot down. “Come to my house for a play date with the boys instead!” I knew this would get me out of the dog house with your brothers and the lack of fun I am these days. I agreed to stay off of the bike. I let myself have a pity party about it for a few minutes and heard my inner self saying the words, “Loser Mom.” I just want to be the fun mom who can go on bike rides and not cry all the time! I just want to be the fun mom who is not exhausted with grief and pregnancy all the time! I just want my old life back where you were here and everything was so happy and wonderful. I know I can stomp my feet all I want, but that will not happen. I have to deal with these shitty cards that I was dealt, the best I can. A play date instead of a bike ride would have to make due for the day.
We went and played. Your brothers seems to be content with the playing over the bike ride. Thank god for Fernanda. We only were able to stay for a while. I had to get your brothers home and their homework done before Macy and I went to see Dr. Jo. We had some things to do at the MISS Foundation. Macy was beat as she ended up not feeling well due to catching the little cold that your Quinn has had for a few days, but she really wanted to go with me to see Jo. We got to Jo’s office. I had thrown on my glasses to cover up my eyes that were bloodshot and so tired from crying a lot of the day. I didn’t know what the night was going to consist of, but I knew the gist of what was going on. I had been asked last week to do an interview for NPR on grief and how one copes with this with or without the religion aspect of it playing a role. I spoke with someone from NPR last week who flew in this week to meet Jo, see the MISS Foundation, etc. Before I knew it, Jo’s room was filled with about 10 people, Macy included who was really just there, to hold my hand. Everyone went around and talked a little about where they stood on the whole God thing. You had some who were atheists, some who used to be christians, but due to losing the most important thing in the world, had lost their faith as well. Some who are struggling to get back their faith back and but are still looking for it. Some are making progress and others are not. You had others, like me… who just are not sure… who believe in nothing AND everything. Who have their own beliefs and those beliefs seem to be stronger than anything in a book, could tell them. Last night in that room, I didn’t see any labels on the people sitting before me. I saw pain, sadness, fighters, survivors, beauty and strength. I could have cared less if the person in the room, across from me believed their god, was an alien. Who am I to judge that? As long as they are not trying to push it down my throat, to each their own. Whatever works for the individual and gets them through the day…. I respect it ALL. No matter how different it may be from what I think or believe. Barbara from NPR asked to meet with me to do a further story on you, us, and all of this. I, of course agreed. You know me and how much I love to say the yes word to anything that comes my way. I often say yes to things not having a clue as to what it is that I am actually getting myself into. That is the people pleaser in me I guess. Or the opportunist. I don’t like to turn down things because you never know what you are going to miss out on. I would rather just say yes, and hope that something amazing comes of it. This is how my day/evening with Barbara Hagerty from NPR went.
Barbara came over to our house. I instantly felt at ease with her which is always super nice. We dove right into things. We picked up from where we left off, last night. I talked about you, our family, a little about my faith, the whole Taylor Swift amazingness, the fucking fuckwad cancer that murdered you, and your foundation. At one point she looked at me and had to turn off her microphone. “I’m sorry,” she said. “I have to stop. I never cry while doing interviews and I’ve been doing this for a very long time.” I watched as she took off her glasses and wiped her eyes. I told her it was o.k. That I was used to it. We started back up again. My interview was long. It consisted of me crying a lot as well. She asked me if I could go back and read a couple of blog posts. Errrrr…. I have never reread the things I have written. Something told me in my mind told me that it was o.k. to do so for this amazing soul sitting in front of me. I picked one that I had written right before you passed away. I also read the one that I wrote from you, to Taylor after I went to her concert. Both of my entries had my bawling as I read them. I tried my best to keep my voice from shaking. I tried my best to focus on my breathing while letting myself go off into another place, while I read my painful, painful entires. Fuck me. I don’t know how you all read what I write. My blog posts are really, really hard to read. That is something I never realized, until yesterday. I just write what is in my head. I don’t actually think about it or go back and ever re read what I have written. Now I know why.
My day with Barb soon turned into evening. She went with us to your brother’s basketball game. She talked to your daddy for a bit. I had such an enjoyable day with her that I was truly sad when our time together ended. She told me that she was going to see if her editor would agree to letting her do a separate story about us instead of tying our story into the piece she was working on about grief and religion. I just smiled and told her thank you for believing in our story so much that she would even ask such a thing. I got an email from Barb today. She got the green light. NPR, here we come! I am of course, thrilled beyond belief. NPR has such a huge audience and will just help even more on spreading the word about this murderer called childhood cancer. It is more of an audience that we have not reached yet. I need the biggest army possible, behind us. Slowly but surely, we are getting closer and closer to our dreams. I will get this research/care center built, one way or another. Failure is not an option. I have too many kiddos to help.
I’m going to end this now by leaving you with a text that I got from my mom or and your Nana. You all wonder why it is that I am such a good mom? Because I was taught by the best. My mom is the best mom on the planet. She has this thing for me called unconditional love. She has never judged me or hurt me through all of this. She not only lost her precious grandson, but her daughter as well. I hate the pain I know I’ve caused her, but I know that has never changed the love she has for me. I am slowly finding my way back to my mom, which has been really hard because the pain that she feels, hurts me so badly that it is hard for me to see so I’d rather just shut down or be closed off. I don’t think there is anybody in my life, that loves me as much as she does… well, besides my husband. I am so lucky and so thankful for her. She loves you so much, Ronan.
Her text was about Christmas. It simply said: I just bought some new Star Wars stuff for the Christmas Tree. Is there anything special you want me to get Ronan for Christmas?
I just cried. I don’t think I even responded. She is the most selfless woman I’ve ever known. The thoughtfulness of that text message meant the world to me. And I know she wasn’t even trying to be thoughtful. She was just being your Nana and the beauty of it all is it’s as simple as that. It means everything to me that she includes you in everything we do. Including wrapping a couple of presents for you to go under the Christmas Tree.
This is a novel. I miss you. I love you. I hope you are safe. Bye bye, baby.
Ronan. Yesterday was one of those beautifully bittersweet days that will forever be. We spent the day at home, together enjoying each other and just taking it easy. I cooked an apple pie while Macy made her pumpkin. Fernanda came by with a turkey that she had made for us. She brought her 5 kiddos, too. I got to get in some hugs and kisses from her sweet baby girls who are 4. I think about that a lot. How they are just a little older than you, before you left this world. I like to sit back and watch them and imagine what you would have been like if you had ever had the chance to be their age. If you would have been here, you would have been running around with your brothers and Fernanda’s boys, shooting toy guns and playing some hide and seek game with them. You would have been in the middle of everything. Fernanda and her gang soon left just as our other friends started to arrive.
Mandy came with her family. Melissa came with hers. Uncle Jay stopped by, too. Soon our house was filled with the warmness and happiness that it sometimes lacks. The girls got all the food ready while the guys watched the football game that was on T.V. The kids all played outside, throwing the football and playing hide and go seek. Melissa’s daughter hung out with us and we did girly things like paint her nails. With sparkles of course. We all sat down for dinner, in the most informal way. Just the way we like it. The kids at one table and all the adults kind of scattered about. All of the girls, sat around our dining room table. The guys went back and forth between us and the football game they were immersed in. It was a nice, low-key dinner. Your absence was so very present though. There is never a time where we aren’t thinking about your or missing you. That goes without saying, always. At one point during dinner, Melissa quietly said a little something about you. That is one of the reasons I appreciate her so much. It’s the little things, such as her simply saying for as thankful as she was to be with all of us, in our home for Thanksgiving, that the reason we were all together was so sad. It is due to your absence that we were in the company we were in. It is so true. It’s because of you, that we are surrounded by our dear friends, some whom we wouldn’t have known if it wouldn’t have been for going through something as awful as this. I started to cry at the table, Macy next and everyone else soon followed. Tears and turkey it was. Tears and turkey it will always be. After dinner, we let the kids beat the shit out of a piñata that has become a tradition of ours during Macegiving. They had such fun doing it but once again, even during all the giggles and excitement, I couldn’t help but think of how unfair that you were not there, to join in on the fun. You would have loved our untraditional holiday, so very much. Pinata’s, mexican food, mullets, mustaches, fireworks and a bit of turkey, too. That’s how we roll on Macegiving. It was a night full of love, laugher, and sadness. Another holiday down. I was just glad to have gotten through it and I was even more glad when it was over. Holidays will never be the same for me again. They just don’t have much meaning for me anymore. They have become something that I feel our world puts so much silly importance on, while the real meaning gets lost in translation. Why do we sit around one day a year and take that one day to try to be thankful for all that we have? Shouldn’t it be like this every single day that we are alive and healthy? I swear I heard more about Black Friday then the actual being thankful for Thanksgiving. That makes me want to vomit. It’s the real world petty bullshit that I have such a hard time with. All week I felt like covering my eyes and ears to all that was going on around me. I don’t want to hear about all the amazing black friday sales. I don’t want to hear about the fightings and shooting over all the sale item stuff. Because at the end of the day, that’s all it is, is stuff. And as we all know, stuff isn’t what matters most in life. But fuck, do people sure act like jackasses about it. Clearly, these people have never watched a kid die from cancer, right? And if so, then I don’t really even have words for that. Don’t get me wrong, I like a good bargain in life. But when it comes the day after I was supposed to sit around and be thankful for all that I ALREADY have, well that to me just seems a little ironic. And stupid. And I want nothing to do with it.
The day after Thanksgiving we didn’t do anything. I was wiped out, Macy was wiped out, everybody seemed to have an emotional hangover. We stayed at home. Cuddled. Watched some movies. Took naps. Ate. I felt like I was in a coma. I forget how the emotionally exhausting these holidays are for me until they hit me the next day. Holidays are exhausting regardless. Add a dead child to that and times it by 1000. It is almost unbearable at times. I knew that I could take one day to gather my strength back up but once Saturday came, I was going to have to face the day. I was glad when Saturday arrived as I had a plan of action. I do much better in the world when I’ve got a plan in place. Without one, I feel like I am just floating around, trying to make it through the day without wanting to slit my wrists. A plan for me, keeps me focused and in line. It’s almost my lifeline in a way.
Macy and I ran around getting some things for your Candy Cart, Ro. We had made a plan with Phoenix Children’s Hospital to do your candy cart on Saturday. In my mind, I was thinking about all of those kids, stuck in the hospital who didn’t get to go home for the holiday. In my mind, I knew of a way that I could bring some smiles to their faces in a really easy way. In my mind, I was also selfishly thinking of me and how I knew doing something like this, for others helps me to get through rough things like Thanksgiving. I also knew your Macy would be honored to be a part of it. I was so excited when Saturday came around it was all you and these kids. We decked out your cart with candy and toys. Thanks to the awesome company, Spirit Hoods, we also had some really great animal inspired hoodies to give out as well. Remember how we used to wear ours in the hospital all the time? How soft they are and how warm they kept your little bald head? They contacted me a while ago and asked if they could send me a bunch. I was of course, over the moon about that. Their hoods make such perfect sense to give to all of these bald-headed babes. Stacy, Mandy Bee and Macy all helped me with the cart at PCH. You should have seen the smiles that I got to see today. You should have seen the way the kids’ faces lit up over the goodies that we brought. You should have seen the way that I felt a little bit happy, being able to do something so wonderful in honor of you. You might think after going through all of this, that I would never want to walk on an oncology floor again? Not true. It is the only place I feel sane in. It is the only place I feel like I belong. Not only did I get to make the kids smile today, but I got to make some parents smile as well. That to me, means just as much. We ended your candy cart day by walking to the elevators and I hadn’t really seen any of us cry yet. I looked over at your Macy and saw her wiping away her tears. That gets me every time. Once she starts, I start and then there is no stopping it. She said something ridiculous like, “I’m sorry. I have a crying problem.” I laughed and thought to myself…”A crying problem? I don’t think so. More like the biggest most genuine heart I’ve ever seen anybody in my life, have.” I don’t know what I would do without that girl, Ronan. I thank my lucky stars every single day that she came into our lives when she did. I thank my lucky stars every single day that I watched the two of you, fall head over heels in love with each other. I thank my lucky stars that she is still here and is still one of my very best friends. Thank you, Ronan for our New York Miss Macy. She is my sunshine during these very dark days.
I’m tired. It’s late. I miss you, so very much. I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.
Ronan. I had a dream about you this morning. I was up off and on all night last night. 12:30 a.m. awake. 3:25 a.m. awake. 6:23 a.m. my phone rang. It was your Sparkly. I shot right out of bed. My heart sunk. Why is he calling so early? Something must be wrong. False alarm. Everything was o.k. I fell back asleep after that. In my dream, I was with your daddy, I think. You and your brothers were sleeping somewhere else that wasn’t our house. I made your daddy drive over to check on you. We opened up a back door to a house that was unlocked. We crept into a bedroom. I was only concerned about seeing you. In my dream, I didn’t know you were dead. I ran over to the bed where a tiny little boys’ feet stuck out of the covers. I pulled down the blanket off of your face just in time to see your beautiful full head of hair and watch you open your eyes and look at me. I kissed your little cheek and felt so happy, but I didn’t know why. I get to see you all the time, in real life, right? I remember saying to your daddy. “He opened his eyes.” Just as I said this, real life happened and the noise from your brothers, jolted me out of my sleep. Oh, how I would have given anything to have had more time with you in that dream. It took me a minute to remember my dream and that you were not here, for me to kiss. That is always the hardest reality to wake up to. The fact that I only get to see you, in my dreams and not here, in your bed or running around our house is such a cruel, horrible reality.
I got up. Helped make breakfast for everyone. Acted as though everything was o.k. this morning when mornings around here are never o.k. My heart has been heavy for the past few days. Remember that sweet boy, Teddy, that we spent some time with in San Diego this summer? The sweet little Teddy that reminded me so much of you? He has been doing really great, then suddenly out of the blue, his parents find out that his Neuroblastoma is spreading like wildfire. They have been told there are not many more options left. His mom, whom I adore, is faced with the decision to just let Teddy live out the time he has left here, or put his through some really harsh chemo to try to slow this monster down. The same kind of chemo, that left us inpatient at Sloan for 24 days, and did nothing for your disease. My heart is breaking. I don’t understand how this can just keep happening to these kids who are so loved in this world and are so innocent. I feel so helpless for his family. I don’t want them to know this life I live, one without your child. It is just too cruel of a world to live in. Please keep Teddy in your thoughts, prayers or whatever else you do. Ronan. You know what to do little man. I promise I am trying to fix this as best as I can. I just can’t keep up with all these kids dying, one after the other. I wish I had a magic wand and wishes really worked. I wish everything was that simple. You can visit Teddy’s caring bridge, here. I know what his parents have decided to do. I will wait for them to post an update, to tell us all.
Even though it might seem like I’m in a really dark place right now… because I am. I am still managing to somewhat function in this too bright of a world. For instance, yesterday I went to a kids fest, Ro. A kids fest without you in tow. Do you know how achingly hard this was for me to do. A festival full of healthy kiddos, just as the world should be. There was not one bald head in sight. I was asked to do a reading there of the kids book, “The Lorax.” I had so much anxiety about this the night before. I tossed and turned. Dreamed about not being able to get through the book, without you there. I took your daddy and your brothers. Fernanda and her 3 boys met us there, too. I sat in a chair and read this story to about 20 kiddos. I talked to you before hand on the drive out there. I closed my eyes in the car. “Please Ronan. I need you today. Help me get through this. Keep me calm, cool, and collected. Help me do this. Stay with me. I need your help today.” I thought to myself, this can either go two ways. I can lose my shit and not be able to control my emotions as I knew having to look out into a sea of kids, and not see your face was going to be rough… or I can keep it together and stay focused on the people I had there, who I love so much. I looked out into the audience. I saw Fernanda’s face. Her boys. Your daddy. Your brothers. I looked down at my feet to see a random little girl, playing with my sparkly shoes while I was reading. This made me smile. I can do this today. I will do this today. I will do this and be proud of myself for doing something that feels so hard to me. I let myself be proud for the .2 seconds that I allowed. That is all I needed. Your brothers had the best day. They got to run wild and free after my reading and enjoy being the 9 year olds they are. I am always glad to see that. I let that be enough for the day.
I have been busy around here getting ready for our Macy’s arrival. Quinn has probably asked me about 10 times what day Macy will be here and what time. She changes the whole dynamic of our family in such a good way. For the time that Macy is here, it is always a time full of laughter, love, and peacefulness. We seem to always have plenty of tears, too, but somehow the tears feel easier when Macy is around. I am so thankful she is coming in for our second annual Macegiving. I am so grateful for our sweet friend who is a part of our family. I am so thankful that she will be here for us on another one of our hard holidays. They all seem pretty hard, but things are a little less hard when Macy is around.
This is all for tonight, little one. Rita just texted me, “Hello suicidal friend. Wanna go to Ikea with me?” That is some seriously funny shit right there. At least it totally made me laugh out loud. I miss you. I love you. I hope you are safe. Sweet dreams, Ro baby.
Ronan. Today seemed like a really, really long day. The days without you never fly by anymore. They still seem to be never-ending. Today, seemed extra long for some reason. Looking back I cannot even remember what I did, but as I sit here and think about it, I know. I missed you with every single step I took just like I always do. I had to go to Target, to stock up on some things. I was in the middle of grabbing some stuff and I had one of those moments where I thought to myself, “Today feels like a really hard day for some reason. You should go back home and go to bed for the whole day.” I finished up my Target trip and told myself to power through the day and just get some things done. It was one of those days where I had to have multiple pep talks with myself. I got home and was determined to get some things done that I have been avoiding. One of them being getting rid of the hand me down clothes that I have been saving forever for you, from your brothers. I went through about 7 bins that we have in our garage. I wanted to throw up. What do you mean Ronan won’t get to wear those Nike shoes now or those little John Deere cowboy boots I saved for him? What do you mean I don’t get to pass down your brothers things for you? That wasn’t part of our “plan.” I had a very specific plan in store for our family and never did it consist of you getting cancer and dying. How the fuck did this happen? I don’t care how real this is, I will never get used to it.
I packed up your brothers clothes. I think I called your daddy on my way to the consignment store. I told him what I was doing. Or at least I tried to tell him, but I could barely get the words out without choking my tears back. He told me to wait that he would do it. I was on a mission and just wanted to get it done. I got to my destination. This was me, walking in. “Don’t cry. Don’t cry. Don’t cry.” I dropped off your brothers clothes and got out of there, as fast as I could. I don’t remember what happened the rest of the day. Everything is a blur as this little event happened earlier in the week. I’m still dealing with the if I don’t write things down, soon after they happen, I usually won’t remember them. I sometimes think my cloudy grief brain is never going to get better. I’ve been called flaky now by others. I don’t mean to be. But if I don’t have it written down, or a reminder from someone…. I tend to forget a lot of things. I wasn’t this way before all of this. This is a part of the new me. I don’t like it, but I also don’t have much control over it.
I went to see Marie Tillman speak the other night. She is the widow of Pat Tillman. One of our hero’s in our house. Remember Ro, how we used to call you our mini Pat Tillman? Your daddy and I used to always talk about how we thought you were going to grow up to be just like him. Unbelievably beautiful. Freakishly coordinated. Fearless. With the best heart. I used to tell you bedtime stories about him. We used to do the Pat’s Run every single year and I would happily push you in your jogging stroller while I ran the race. I was excited to go out for the night with Stacy to listen to Marie talk about her life and the book she has written. After she was done speaking, I had the chance to talk with her a little bit. We talked about you, Pat, and this bitch of a thing called grief. She said something to me like, “Everyone expects you to get better over time, and I don’t think that’s true. I told her that I couldn’t agree more. That unfortunately, grief does not seem to have an expiration date. It is such a misconception that time heals all wounds. If anything, I think it makes the pain worse. Deeper in a way. I think I miss you more today, then I ever have. I think I will go on missing you more and more everyday as time passes on by.
I think I have kind of been hiding out a lot. Grief and pregnancy do not go hand in hand together and they are not my friend. I’m still trying to wrap my head around this Poppy sister of yours. She’s starting to kick a lot which is helping to make me realize that she really is growing in my stomach, otherwise I think I might forget. I was with Fernanda today, telling her about how I cannot even go into a clothing store without wanting to scream and run the other way. In my mind, I was thinking this was a more of a what’s wrong with me thing? What is so wrong with me that I cannot even pick out some sweet little clothes for your baby sister? Fernanda put it to me in a way that only she could do. It’s not a what’s wrong with me thing. It’s a because “you know that material items such as clothes in a fancy store, are not what matters. They won’t make you happy. It’s just stuff and you know the worthlessness of that stuff.” I think she hit the nail on the head. All the stuff at the end the day, doesn’t matter at all. So maybe, this is what my road block is all about. Poppy has to be clothed, but Fernanda told me not to worry about that as it will be taken care of. If I had my way, she’d just be a nudey baby forever I guess. I was told also not to worry about her nursery. That she will pick out all the furniture, how it looks, etc…. Of course I trust her with all of this. I am just so thankful that I don’t have to think about any of it as it all seems so overwhelming. I am so thankful for my amazing magical friend who can fix any situation and instantly make me feel better about it. Well, almost any situation. I know she wishes so badly that she could have fixed your situation but I’ll never forget how hard she tried. She tried just as hard as your daddy and I did. I’ll never forget that.
This is all for tonight little man. I’m tired. But restless. You are still waking me up every single night at 3:25 a.m. It’s been this way, since you left. I know it’s you, trying to get to me. I know it’s as hard for you, to be away from me. I’m so sorry about all of this. I wish so badly I could bring you back. I miss you. I love you. I hope you are safe. Sweet dreams, little man.
Ronan. Today was one of those days where I just could not stop crying. I cried after I dropped your brothers off at school, I cried over every single Taylor Swift song that came on the C.D. I was listening to, I cried when I ran over to the mall looking for a very specific gift which I could not find, I cried when I went over to the baby girl section and tried to look at the clothes. I had a flashback to the days of when I used to ohhhh and awwww over baby girl clothes. Today, I didn’t see anything I liked and I just wanted to rip everything off of the racks. What is wrong with me? Then I remembered. Grief. Hormones. Pregnancy. Stress. Not sleeping well. Missing you. A lot is wrong with me, actually. WTF asshole mother fucker who thought I could handle all of this. All of this is way much for one person to handle. I left the mall, upset and sent my little Mandy Bee a message. “I need your help. Call me.” I told her about the gift I needed to find. She of course made a ninja plan to help me tomorrow, go and find it. She called around to a few places. Tomorrow will be better with my sidekick in tow to help out with my crisis which is actually not a crisis at all. It felt like it today.
I got a text from your Sparkly. I went down to his office. I picked up Starbucks. A coffee for him. A water for me. We shared some fruit and nuts. We sat and caught up. Our weekly little catch up that means everything to me. “Why are your eyes so red today?” He asked. Fuck, I thought to myself. I was not going to mention to him, how I had been crying most of the day but apparently my bloodshot eyes were not cooperating. “Oh, that would just be because I’ve been crying all day.” “Why so much today? Just the usual?” he asked. “Yes. Just the usual. I just miss Ronan so much, all the time, that’s all.” He knows that. He always knows that. We talked about some other things. He was proud of the advice he gave me that I listened to. I told him how he was pretty much the only person I listened to in this life anymore. He knows that too. You know what I told him today? That my life without you is full of so much pain, sadness and hurt. That all I get now are beautiful moments in life. I don’t get a life full of beauty, only moments. Those moments mean so much to me. They are like the air I breathe and I inhale them as much as I can. This is why it is so important to me, the people we surround ourselves with and the life we choose to live. The moments of utter beauty and bliss that I only feel by being with certain people. I soak them up whenever I can, as much as I can. They help me to survive this life I live now, without your sparkly eyes, little laugh and sweet lips. A life full of moments is what I am left with, Ronan. I’m afraid this is the best it is going to get. I will be thankful for those moments. I am trying my best. But I miss the days when life was always beautiful, always joyful, always full of such love and laughter. Back when you were healthy and here. Everything was so simple and so easy. I was always so thankful for what we had. It’s hard to have the all ripped away and still look on the bright side of things. Mother fucking asshole cancer. I hate you.
We went out to dinner tonight to one of our favorite restaurants, Tarbell’s. We sat, just the 4 of us and I tried to let myself relax and enjoy our dinner. This never happens for me. My mind is always wandering to where you would be sitting, what you would be eating, how beautiful your little face would have looked lit up by the flickering of the candlelight. We talked about Poppy for a while. I told your brothers once again, how I really want to name this baby girl, Poppy. They are so not cool with it. Quinn looked at me and said, “Why do you want to name her Poppy? That is basically like naming her Wooddawg.” I had to laugh at that. I told him about the story that somebody told me about the Poppy flower.
Flanders is the name of the whole western part of Belgium. It saw some of the most concentrated and bloodiest fights at the first world war .
There was complete devastation. Buildings, roads, trees and natural life is simply disappeared. Where once there were homes and farms there was now a sea of mud, a grave for the dead where the men still live and fought.
Only one other living thing survived and that was the poppy, flowering each year with the coming of the warm weather. It brought life, hope, color and reassurance to those still fighting.
In Flanders Fields the poppies blow
Between the crosses, row on row
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.
We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie,
In Flanders Fields.
Take up our quarrel with the foe
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders Fields.
John McCrae 1915
I’ve am living in a war zone every single day. I am surviving, just like the Poppy flower. If I wasn’t sold on the name Poppy, I sure am now. Who am I kidding? I think the name is darling and it truly makes me smile. It makes me feel happy. I don’t think there is any deciding until we actually see this baby girl. Even if we name her something else, she will be called Poppy as a nickname. It is already her name, and she is not even here. Now if I can only get those brothers of yours on Team Poppy. I think you would have liked the name. I think it would have gotten the Ronan seal of approval.
This is the end of your story for tonight, baby doll . I am as always, wiped out. I’ll fall asleep quickly as I have been doing so easily lately. Only to wake up around midnight to toss and turn for the rest of the night. I kind of miss my Ambien is the devil days. The devil was kind of fun to dance with. Sometimes, I miss it. I miss you. I love you. I hope you are safe. Sweet dreams, little one.
Ronan. I survived your 18 months. It rained. Of course it did. It was a hard day with a lot of tears but I didn’t die. If pain alone could kill me, I would have died about a million times by now. I’ve been busy but not in my normal way of running around like a chicken with it’s head cut off. I’ve been doing a lot of things around our house, which you know kills me. I’ve been spending a lot of time with your brothers and daddy. We have gone out to eat a couple of times, as a family. “Table for 4 please,” never becomes easier to say. I always have to say it fighting back tears. I told Rita yesterday that being pregnant makes me suicidal. I was kind of joking but kind of not. I feel really alone and isolated with this pregnancy. Like I am the only mother in the world who has lost a child and is now carrying another life inside of her. I know there are other mothers out there, who have gone through this as well. But they are not really in my inner circle, unless you count Dr. Jo. So for the most part, I am alone in this. Nobody else that I am in contact with, knows what this could possibly feel like. Instead this pregnancy is filled with a lot of happiness from the outside world. As if this will fix everything. It doesn’t. It will not. I know this baby will bring a lot of smiles, but my smiles will always come with tears; for the rest of my life. The pain behind my eyes, will never go away.
I have been trying to plan our second annual Macegiving. You know since last year I banned Thanksgiving at our house. We made our own day and it revolved around your Auntie Macy and doing whatever the hell we wanted. No formal Thanksgiving Day existed. Macy will fly in, just as she did last year to save us from this wretched holiday. Maybe this year, I feel as if I have more to be thankful for, but I still think it is bullshit that I have to sit around a table, without you. Last year, I wore my “Fuck Cancer,” shirt. I shot a bb gun. We ate Chinese Food, let off fireworks and beat the shit out of a piñata. This year will be more of the same but I will cook some pies. I love cooking pies and miss it so much. We will have friends come and go through out the day. Nothing formal or stuffy. No fancy clothes or fake smiles required. No prayers or sitting around a table together saying what it is, we are thankful for. Our day will be tough, as all holidays are, but thankfully we have some great friends to help us get through it. The best fucking friends on the planet.
Poppy is growing like crazy. So is my stomach. Never in my life have I eaten healthier, not because I want to, but because she requires it. I’m a healthy eater anyway, but Little Miss Poppy, has taken it to a whole new level. No meat, not much candy, no fast food, nothing greasy or processed. I’ve been living off of humus, fruit, veggies, some cheese here and there. The other day, I went to a restaurant with Stacy and Fernanda. Fernanda ordered a burger, Stacy the French Dip. “I’ll have the veggie platter, please.” They both looked at me like I was crazy. “WTF? I know! This Poppy only wants really healthy shit!” With all of you boys, I totally remember eating burgers, ice cream, etc… Stuff that you are supposed to enjoy when you are pregnant. Maybe it’s because she is a girl, that I want none of that stuff. I find it funny. I wonder if the second she is born, that I’ll be dying for my meat and candy galore again. Right now, sign me up for the beets, cauliflower, humus, apples, and whatever healthy stuff I can get my hands on. I even went to the movies a couple of weeks ago with Rita and pulled out cauliflower from my purse. It didn’t even seem weird to me until she pointed out that it was totally weird. Your little sister is quirky already and I kind of love it;) She is already taking after me.
Last week I got the news that the trial we funded with Solving Kids’ Cancer for Dr. Mosse at CHOP is a go. We sent our check in and I could not be more proud. Proud of you. Proud of us. Proud of all the people out there, sending us there hard-earned money. A dollar here, a dollar there…. It all adds up. I am so proud to be partnering up with another AMAZING childhood cancer foundation. Believe me, I have researched them ALL. Solving Kids’ Cancer is the best of the best. I cannot wait to collaborate with them for the many more things that we have in the works. Together, we are going to change this game, big time. I kept my word to Dr. Mosse. I said from the very beginning the first thing we funded, would be with her. Although she never treated you, Ronan, she navigated us down this road and at the end of the day was the only person to look me in the eyes and say, “I am so sorry. We as a medical community, have failed you.” Those words, one of the worst things I have ever had to hear, came across not in a sharp and hurtful way, but full of compassion and true sadness. Her eyes were full of the dignity and grace that you deserved and that we as parents, so needed. I believe in the work she is doing. I believe in her as not only a doctor, but a human being. I know what she is doing, will make a difference. I am so happy to support her in any way that we can. Thank you all so much, for making this happen. This would not have happened, without you.
Tonight I went to Chelsea’s Kitchen for a little pow wow of a dinner. I met up with some of our lovies for an impromptu meeting about some things we have in the works. We talked about some foundation things but also some personal things. I have some of my closest girlfriends who want to throw me a baby shower. I’ve been fighting them on it but I know I am not going to win. We sat tonight and talked about how they know the “traditional,” baby shower, won’t fly for me. “Please, I don’t want to sit around, drink punch and open gifts. Please, I don’t want to play the jelly bean game where you guess how many of them are in a baby bottle. Please, I don’t want to have everyone guess how big my belly is with a string. I will throw up and run out of the room if any of that takes place.” Please I just want my Ronan back, too. Can’t I have Ronan and Poppy both? I cannot. At the end of the night the girls came up with some ideas for this very non traditional baby shower which I will know nothing about as I am just showing up. All of their ideas made me laugh and seems very Maya like which means it goes against the norm of everything baby shower required. My anxiety is a lot less now. I am so thankful for the friends I have, who understand that a traditional shower would only send me screaming out of the room, crying. I am thankful for the friends who embrace the me for being me and love me so much. I am thankful that they are still here and were brave enough to never go away, even when I know I was not capable of being a friend to anyone. I am thankful for them loving me and never judging. Because they understand that nobody has the right to judge a grieving mother. It’s because of their gifts that I will forever spend the rest of my life, giving them what I have left. Which at times, may only be a little or it may be a lot. Either way, they do not care. They love me enough to stand by my side to know that when I am ready, I will come back. I feel like I have in a lot of ways. I am so glad they waited for me. I am so glad they never gave up, even after you left Ronan. They are still here and still fighting. That is also because they love you, so very much. I know there was a time in my life when I thought I didn’t need anybody. All I wanted to do, was push everyone away. The friends that are still here are the one’s who never stopped fighting for you, for me, for us, for our family. I will forever be so thankful for them. I now know that I very much needed them all so badly. I would be so sad, if they had gone away which they easily could have done but chose not to do. Thank you to all of you, who are still here. I love you so very much.
Alright little man. I am beat. Poppy is still making me pretty tired. I am dreaming so vividly but still not seeing you which I don’t understand. I talk about you, watch everyone else talk about you, your death seems to be in my dreams all of the time, but never your little face. I would give anything to see it. I think about you all of the time. You would think this would mean I get to see you in my dreams too. I don’t. I hardly ever do. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.
Ronan. Most days, I honestly don’t know how I am surviving without you. I’ll just be doing normal things like walking through a store and suddenly I’ll have a flashback of you dying. Then I’ll think to myself, “How can you be walking through this store, when Ronan is dead? You have a dead child. You shouldn’t be here. You should be dead, too.” I still wish for death, but I guess it is less often than I used to. I am able to think a little more clearly about why me dying, would not be a good thing for anybody, including myself. I see the bit growing I have done. I look back at a year from now and I know I was in a really bad place. I guess as of today, my place of existence is a little less dark and I see this due to the process that is being made and all the things I am doing. I let this bring me back from the ledge when I feel like jumping. I have to sit back and be mindful of every single thought I have as I know my impulsive ways could easily get the best of me. Everything I do is so carefully thought out now. It has to be, otherwise I risk too much in this life. I still have a lot to lose, even though some days it feels as though I have lost everything.
I had to film a video yesterday. I felt like I was doing a public service notice and in a way, I guess I kind of was. I sat around Fernanda’s table with Stacy, Melissa, and Fernanda, to get this done. It was hard but looking at the 3 of them gave me the strength to do what I had to do. That and my little talk with you. I started off my video with saying, “I am the mother of a child who was murdered by childhood cancer.” That is our truth. You were murdered and maybe if I start putting this in a sentence that really hits people, they will listen. Fernanda talks about what we went through, the same way I do. I should have put her on video to tell the story with all of her mexican spunk and passion which I love so much. “We watched as Ronan was murdered before our very eyes and there was nothing we could do. It’s like all these kids are being put into a war zone and snipers are shooting their heads off one by one. If that were the case, the President would be called. He would put a stop to this! The world would be in an uproar. It is the same thing happening with childhood cancer, only nobody is calling in the troops! I do not understand this! Where is all the help?!” I listened to my friend, so thankful but not thankful that she understands this almost as well as I do. I wish she didn’t. But I am so glad she is still here fighting with us. I honestly don’t know what I would do without her.
This problem has gone on so much longer than before you, Ronan. What will it take to change this? I can feel things slowly changing, I think. But slowly is not a good thing when every single day, kids lives are at stake. I am doing the best I can, but it feels like it is not enough. Nothing will ever be good enough. There are too many Ronan’s, Ezra’s, Ava’s, Hazen’s, Penelope’s, Ben’s, Charlotte’s, etc, etc, etc….. in the world. Too many kids that should have been saved, but sadly were not. I know I can’t bring them back, but every single child that has died from childhood cancer deserves to have this mother fucker taken down to china town. We all owe this to our kids. Even the one’s who are still here.
Today, I woke up not feeling well. Liam was not feeling well either, but I took him to school and told him to see if he could tough it out. I had a “meeting,” to go to which really just consisted of some foundation things to get done but it was important so I really wanted to go. I sat and hashed some things out. I am so sure of what it is I am doing in regards to you, your life, your death, and how we will honor you, as your parents. Nothing is clearer to me. I’ve never been one to second guess myself, Ro. Especially when it comes to you. I am not about to start. It seems as if I’ve done alright, so far. Look at everything that has happened due to me listening to myself and following my heart and your lead. I did not get her by being a fool or having an agenda. My only agenda is you. I know what it is, you want me to do. Helping this cause is the only thing I want to do in life. Gone are the days of wanting to be a therapist or even just a stay at home mom. Gone are the days when I thought I had a choice in regards to what my life would look like. I would have never wished to be here, doing what I am doing now. But this was not my choice. I have been picked to fight a war and fight is what I will do. For the rest of my life. For you.
Tomorrow, it will be a year and a half without you. I cannot even believe this. I had a little meltdown today. Stacy called while I was laying on my bed, sobbing. If she would have called me 4 months ago during this, I wouldn’t have picked up the phone. Today, my friend called and I picked up. I didn’t hide the fact that I was breaking down. I sat and cried to her. She talked and listened. She told me she how badly she wishes she could bring you back. I told her that I knew that. How everybody wishes that for me. For all of us. We talked for a little while longer. I told her I was going to see Dr. JoRo later and she thought that was a really good idea. I desperately needed it today. Especially today. I drove to Dr. JoRo’s office. It started raining on my way there. Of course it did. I sat in Jo’s office and told her I could not believe it had almost been 2 months since I have had a session with her. That is much too long for me to go, without talking to her. We talked a lot about Poppy and my fears. How I am not feeling attached yet because it is my way of protecting myself in case something happens and Poppy dies. I told you Ronan that I wish my mind didn’t work this way but it does now and I’m not going to deny this. I am not afraid to talk about all of my fear and doubts. Dr. Jo told me this was totally normal after going through something so traumatic. We talked a lot about how I am dealing with everything. She told me the only thing she worries about is how hard I am on myself with everything I do, think, and feel. How she knows I am still punishing myself which is why it’s so hard for me to take the time to do things that are nice for myself or feel good. She says she knows I am going to love your little Poppy so much and has no doubt I will be the best mama to her. Deep down I know this, too. I talked to her about how I haven’t been preparing for this baby in any way. How I tried the other day to go and maybe pick out some sweet little baby clothes for her but all the baby girl clothes made me mad and I wanted to punch out all the Pink baby shit everywhere. How I got so upset because I just wanted to be picking out clothes for you. I should be buying clothes for both you and Poppy, not one over the other. I had to leave the store and didn’t end up buying a thing. I told her that I want nothing to do with decorating Poppy’s nursery. Maybe that will change in the next few months but I have no interest in preparing for anything yet. This of course comes with a lot of guilt. As if I need anymore guilt in my life. I live with the guilt of not being able to save you, every single day. It was good to see Dr. Jo today. As always, she is such a voice of reason and I trust her with everything. I am so lucky you brought her to me. Thanks, baby doll.
I’m going to go now, little one. The day has been long and I’m too sad to write anymore tonight. Tomorrow will be here soon. Maybe you will make it rain. I will try to do something nice for you. Or maybe for myself. Always someone else. I love you. I miss you. I hope you are safe. Sweet dreams.