Ronan. It is amazing to me, that because of one girl, the entire world seems to know your name now. I am getting so many emails, blog comments, phone calls, and all I am hearing is how much people are inspired by you. How better the world is going to be, because of you. I am trying my best to keep up on everything but today, I made myself stay inside of our house so I could try to get caught up on some things. I didn’t happen. I am so beyond beat that I am thinking I may have a baby vampire growing inside of my belly, because it is literally sucking the life out of me. I’m not used to this. I don’t do well with anything that slows me down and I am having a hard time just letting myself be with all of this. I’m not going to lie. I am scared about this new baby. I worry a lot about not feeling attached to it yet. I think that is normal, after you go through such a heavy loss. But this being pregnant thing only seems to make me miss you more and more. My heart feels a thousand times more heavy then it has in a very long time. Part of this doesn’t even feel real to me yet. And then there is that part of me that still thinks this baby is just going to die, because I know that can happen. I am trying to stay calm and relaxed, but I am consumed with constant worry and sadness. I worry about things like, what if I don’t love this baby, as much as I love you? Is that awful to say? It sounds awful. But in my mind, I cannot imagine loving something as much as you. As of now, anyway. I worry that I won’t be able to be a good mom anymore, because I am so sad. I am trying so hard with Liam and Quinn, but it doesn’t come as easily to me as it used to. I think that is still the grief part of all of this.
Somebody said to me, “You are famous now.” I just replied with a simple, “No I’m not. I’m just a sad mom who lost who son and who would do anything to have him back. I almost threw up at that famous word. Famous because my son died and some beautiful girl wrote a song about him? No. Not famous. Just a mom who is in a very sad world now and someone very sweet decided to do something very beautiful because she has such a wonderful heart. I’m not sure quite what to do with all this attention. I just want it to all go to the awareness that childhood cancer needs, deserves and wants. I want our story to inspire kids to become doctors, who will do everything they can, to change the awful statistics, outcomes and treatments of childhood cancer. I want our story to inspire nurses to go into pediatric oncology, because these kids deserve to have the best people taking care of them with the biggest hearts. I want our story to inspire people to become child life specialists who really will make a difference in bringing a smile to a child’s face. I want our story to impact people in such a way that they follow their hearts and listen to their dreams no matter how many people try to stop them or hold them back. I want all this “fame,” to go to where it deserves to go to. To the real heroes of this story, the kids battling cancer. That is what I want. This spotlight is not for me, but them. This scary world where childhood cancer gets such little support and funding. Childhood Cancer is the number one disease killer in children. I know this the hard way. I am reminded of this every second of every single day. This HAS to change for these other kids. Why is it acceptable that we are just throwing away our future? You would have grown up to be something so amazing, Ronan. I just know this. But now, I’ll never get to see this. I will never get over this or “get better,” from this. You don’t get better from losing a child. You learn to live with it and fight on because you are left here to change this for others.
- Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
- Pediatric AIDS receives 4x the funding that childhood cancer receives.
- In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
- In the U.S. almost 3,000 children do not survive cancer each year.
- Over the past 20 years, only TWO new cancer drug has been approved for pediatric use – Clofarabine (Clolar-Genzyme) in 2004 for ALL and Tenoposide (Vumar/VM-26-BMS) in 1990.
- Only 3% of the National Cancer Institute Budget goes toward Pediatric Cancer Research.
- September is Pediatric Cancer Awareness Month, which nationally goes unrecognized.
- The federal government recently cut the budget for Childhood Cancer Research.
- Currently there are between 30 – 40,000 children undergoing cancer treatment in the U.S.
- Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.
- Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.
- As a nation, we spend over $14 BILLION per year on the space program, but only $35 million on Childhood Cancer Research each year.
- There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
- The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
- Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
- In 2005, the American Cancer Society provided only 2.5% of funded grants, or 1.85% of dollars spent on research to pediatric cancer
If somebody had changed these things years ago, you may still be here. Now you are not here, and it’s my job to help do this so maybe someday another little boy or girl does not have to die from Neuroblastoma. Maybe if this disease gets the attention it deserves, breakthroughs will be made and the odds will not be stacked against these kids. That’s my hope for all of this anyway. I am moving forward with my plan. It’s a big one and if I actually sat down to think about my dream and what it is, I’m wanting to do… it might scare the shit out of me. Unfortunately, I don’t have time to sit down and be scared or worried that I am taking too much on because kids are dying left and right. That is unfucking acceptable. You died. That is the most unfuckingacceptable thing of all.
I am tired in a way that I don’t remember being tired in my life, ever. Did I mention that I am not a fan of being pregnant? I never have been. I would rather fast forward and give birth a thousand times than feel like this. I hope there comes a point where I get my energy back again. I don’t like being slowed down in any way. I am trying my best to listen to my body. My mind is restless but my body is exhausted. I woke up last night to one of the worst dreams that I’ve had in a long time. That any memory I had of you, was totally and completely gone. Like you had been erased from all of my thoughts, visions, and dream. It felt so real. I woke up with my pillow soaked with tears, scrambling to find you. I then had to remember that you died as I tried to put together in my head, what it was like when you were here. Please don’t let me forget I thought to myself. Please. My memories of him are all I have left. I would die without them. I spent the rest of today being completely thrown off by my dream of not being able to remember you. I’m still in a funk from it.
I fell asleep early tonight, but I’m up now. I would give anything for a solid, peaceful night of sleep. I would give anything, for a lot of things like having you back here. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I wish you were here.
P.S. Fuck Cancer you fucking fuckwad for murdering my baby.