Romama’s Busy Day


Ronan. I don’t have time to dig my hole this week, because due to a last minute invite…. I am so busy. And so tired. But in a very good way. I got an email from a lovie from T-Gen a few days ago. She wanted to tell me that Dr. Giselle Sholler was coming into town for a conference. She attached the info. I looked up the conference info and it said registration was closed. I emailed this lovie back and said, “Please, if there is anything you can do…. I’d love to attend this conference!” About an hour later I got an email back saying that I could indeed attend the conference and T-Gen would happily take care of my registration fees. So nice, Ro. I told your lovie, thank you so much! She replied back with, “Anything for Ro.” Thanks so much, T. You have no idea how much this means to me.

The conference is Monday-Wednesday and it’s all on Pediatric Cancer Genomics. Otherwise known as a foreign language to me, but I think I’m starting to understand parts of it. Just when you think you are starting to understand pieces of this childhood cancer thing….. you find out that you really have not a clue. I did not get home until 7 tonight and getting someone to help with your brothers was so last-minute as well. Thanks Sarah, so much. You saved me. I sat in a room full of so many amazing people. I felt honored to be among them. I saw your Dr. Eshun there. He is such a kind soul. He look surprised to see me. I gave him a smile and he tried to just shake my hand like he always does as he is so polite. I grabbed him for a big bear hug instead, like I always do. He asked how we were and wanted to know what I was doing at the conference. I just smiled and told him that if I was going to be an advocate for you, that I felt it was necessary to educate myself on what it is that I am advocating for; besides the obvious. I told him how I have been quietly watching Dr. Sholler from afar for a while and how I was interested in T-Gen as well. He said to me, “You probably know more about this stuff, then I do.” I just laughed and said I doubted it, but I was a fast learner. I told him I’d see him tomorrow. He smiled and said to have a good night.

Tomorrow the conference starts at 8 a.m. but I won’t get there until after I drop your brothers off at school. It goes on until 6:30 or so. It’s a long day but it’s a good long day to have. I love to learn and it comes easier to me when it is something I am very passionate about. You would be the passion behind this, of course baby doll. I was sitting in between 2 men all day. The one to the right kept falling asleep and snoring. I almost elbowed him and said, “Seriously dude?! My son died from cancer, can’t you at least act like your interested in being here?” I kept trying to read his name tag to see where he was from. It said his name and that he was from COG. I tried to give him the befit of the doubt, like maybe he had bad jet lag or was sick. If that were the case he should have just went back up to his hotel room because he slept though pretty much everything. The guy on the other side of the guy I was sitting next to looked nice. I caught a glimpse of his name tag. He was there for the Team Finn Foundation. I grabbed my phone and googled him right away. I don’t waste any time. I read about his son, Finn who died from Rhabdomyosarcoma. I grabbed Finn’s dad on the arm and held it there. I said, “I Googled you. I’m sorry about Finn.” His eyes started to tear up. “I lost my son, Ronan, almost 9 months ago to Neuroblastoma.” I don’t remember what we said next. I think Finn’s dad asked me, why I was here, besides Ronan. I said that was the only reason I needed to be here, was for Ronan. He is my teacher now and he knows I need to learn everything I can on this so we can hopefully help them if we believe in what it is they are doing. If I am going to support T-Gen, I need to do my homework. This is not a test I can flunk. This is not a test you can do over. I am here to learn what they are going to do with pediatric oncology that it will impact this disease in a big way. I am here to meet Dr. Sholler, so I can at least tell her thank you for being so kind to us as she was going to take Ronan on one of her trials in San Diego, but then your little liver starting failing baby…. and there was nothing else we could do. We were trying to get a plane to take us out there and everything. But you were dying even though we still had hope. So much hope. You organs, just started shutting down, one by one. I’ll never get the mental image of your skinny little body out of my head. It will haunt me for the rest of my life. I think about so much, all the horrible treatments you were put through. So much chemo, pokies, oral meds, sedations, surgeries, radiation….. none of it worked because if it did, you would not be dead. Your daddy asked me the other day, what I thought would have happened, had we done nothing? I can’t answer that question yet. Did the chemo kill you faster than just letting you be???

I remembering after you died that I was in such shock. I was sitting with your Mr. Sparkly Eyes and I just said to him, “How did he die? I mean, what happened?” I don’t  medically understand how he could just die.” Sparkly sat and explained it to me in a way that I could understand. Basically all of your organs started failing, then stopped working. Your heart just stopped beating. I thought why couldn’t we just get him new organs and a new heart? Somebody had to have those just lying around, right? How could his heart just stopped beating? That’s impossible! He loves me too much! I still think this way. Sometimes my heart feels so full of love like it did tonight when I met Finn’s Dad, that I swear it doubles in size. I think your heart lives inside of me, Ronan. I think that’s why when I feel really strongly about something or someone, the love I have for them gets twice as big. That’s all because of you. Our love is so strong. It is so amazing. It is going to change the world. I may have broken my promise to you about saving you…. but I’m not breaking this one, Ro. Our LOVE WILL CHANGE THE WORLD. Just watch baby. Just watch.

I’m going now. My brain will not shut up on genocodes/genomics/phenotypes/functional genomes/translational genomics//////// intense stuff///////// worth the raging headache and red eyes. Ready for tomorrow. Not really. But I need to get some sleep for tomorrow. I’ve been sleeping in your bed. It makes me feel close to you.

I love you my spicy monkey boy. I miss you so much. I hope you are safe. Sweet dreams, baby doll. G’nite.

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9 thoughts on “Romama’s Busy Day

  1. maxloveproject

    your love *is* changing the world, promise. your energy/your love cannot be destroyed, diminished, demeaned, dismissed and cannot — will not — disintegrate. it can only build, embrace, change, progress, heal, help…save. you *are* changing the world. honestly, i’d want to have ronan back and not change the world, if that exchange could be made. i want to reverse my son’s diagnosis. i’ve asked why can’t it be me instead. but we are where we are and your love will not dissipate — thank you for that, even though my thanks can’t possibly help, i have to share it with you. sending only 100% love, maya and ronan.

  2. Robin

    Maya, until you and Ronan I was so ignorant about pediatric cancer. But now that I know about it, it is everywhere! I moved to S.Cal about a year and a half ago, and my sisters boyfriend ( who is my roomie) is a med student that works in the lab at Loma Linda.. And guess what they are working on… Neuroblastoma research!! He even had to miss my wedding to do some critical experiments! I told him finding a cure for this
    Killer disease is important work that may help
    Kids one day soon.

  3. Ali

    Awesome that you’re doing this! It’s nice to know that any money donated to Ro’s foundation will be going to the best research. ❤

  4. Angie

    I was just looking at some of your previous posts again and came across the one with the picture of Ro, the boys and Woody, shortly before he left, I assume. I could NOT imagine seeing my son like that. It just makes me cry and feel sick inside. I’m so sorry all of you, and especially Ro, had to endure that. You did not have a choice though- you needed to do everything in your power to try and save him.

    I hope this conference empowers you even more to kick this disease’s ass. Please let us know what we can do to help.

    Lots of love-

  5. Tanya

    You are so strong and determined and you ARE making a difference, and you WILL change the world. You and Ro are both such sweet souls. Love you and think of you both all the time. ❤

  6. Nicole

    Your love has changed my world, and I cannot thank you enough for sharing your story. I am a different and better person because of you and Ronan. I have the pin with Ronan’s picture from the fundraiser at the Biltmore. It is hanging by our door, so I see it and think of you and your family many times every day. Sending you so much love and gratitude.

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