I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are ¬†asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed ¬†brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. 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 to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo