Ronan. You Stink. You Smell like Beef and Cheese.

Ro baby. Hi. I love you. I miss you. For as often as I write to you, I still can’t get over the fact that I am writing to you because you are dead. This will never be o.k. with me. I will never get over this. I will never stop wishing this wasn’t my life.

Yesterday. I mean, really. Was yesterday really necessary? No. But we don’t live in a normal world anymore, so any kind of worry, becomes something major. Remember that CT/MRI scan Quinny had a couple of months ago? Your daddy followed up with a neurologist afterwords. They said it was nothing to worry about but we know that nothing to worry about will never exist again. They said they wanted to see us in 6 months just to be on the safe side. I got a call from PCH on Wednesday saying they actually wanted us to come in on Thursday for another MRI. They wanted to check the blood flow in Quinn’s brain. I, of course, freaked out. I was trying to drive to Dr. Jo’s office when I got the voicemail from PCH. I passed her office twice because that is how distraught I was over this voicemail. I showed up to Dr. Jo’s office, frazzled. I told her I was waiting to hear back from them to see if they were mistaken because the last I heard, we were supposed to come back in 6 months, not 2. I called Dr. Maze to ask him if he could figure out what was going on for me. Nobody could get a hold of the Neurologist to get to the bottom of what was going on. I told Dr. Maze we would just keep the appointment and do another MRI if that is what they wanted. I told him about Quinn and the way he has been blinking his eyes so much… kind of twitching. I told him how I had him at our pediatrician a few weeks ago and that I had mentioned this to her and she said it was probably due to his Type A personality and stress. But now I was convinced it was because he had a fucking brain tumor or something. Aubrey asked why I hadn’t told him this before. I told him because I have been watching it and didn’t want to make a big deal about it as Dr. Campbell told me it was due to Quinn’s anxiety. He told me to just come in so I could put my worry to rest. I didn’t argue.

I didn’t tell Quinn until Thursday morning, that we were going to have another test done. I downplayed it. I kept him home from school and told him it was because I wanted to have a day alone with him. I told him that I wanted to figure out why he was blinking his eyes so much, so were going to go down to PCH for another little test. I made it out to be not a big deal at all. We got to PCH and waited. My Mandy Bee came down to sit with us. She went back with us as Quinn went into the MRI machine. She rubbed my back and made me laugh by sticking ear plugs up her nose. She kept me from throwing up anymore than I had during the day. Quinn stayed calm while we waited in the loud, cold room with him. He was a little champ. As soon as we were done, we gathered up our things. Dr. Maze wasn’t there but I texted him after to tell him we were finished. He said he would call me after the techs read him the results. Mandy and I took Quinn to eat. I didn’t eat as I was too nervous but I sat and pretended that everything was fine as I waited for the phone to ring. It rang. I didn’t even get the chance to ask for the results as Dr. Maze told me that everything was fine before I could even say hello. There was nothing there. He was sorry that we had been put through this again because it wasn’t necessary. I thanked him. I wished it wasn’t necessary but as we know now, everything is necessary when one of your children gets cancer and dies from it. I came back inside to Mandy and Quinn. I told them both that everything was fine. Mandy sent me a secret text asking if everything really was fine. I told her yes. She asked me why I still had such a worried look on my face. I told her because my worry never goes away anymore. I worry about everything, Ronan. You. Quinn. Liam. Daddy. Mostly you.

I wrote the above a few days ago, little one. It’s been a long, hectic week and it took me some time to recover after Quinn’s 2nd MRI. I’ve been writing here and there to you…. but mostly I’ve just been back in my black hole.

Ronan. The Rabbit Hole. It’s a movie. It’s a movie with really good actors. It’s about a mama and a daddy who lose their 4-year-old boy. Not lose like lose him at the grocery store and then they find him 10 minutes later. Not lose like that time we lost Liam at Disneyland only to find him 5 minutes later. I so wish we had lost you at Disneyland only to find you again. I wonder if those parents, know how lucky they are. So, this Rabbit Hole movie. I don’t know why I even bothered tonight. I NEVER watch T.V. or movies anymore but I guess I was just wanting an escape. Leave it to me to go and watch a movie about something like a child dying. Defeats the whole purpose of my getting lost. I don’t know why I can’t just ever seem to take the easy route with things. I should have just put in a mindless comedy. Something that would maybe make me laugh for a second. I guess it was more curiosity than anything. I guess I was hoping Hollywood would get it right. I should have known better. They didn’t even scratch the surface, Ronan. Maybe if I were a normal mom, watching this under normal circumstances because all of my children were alive…. I would have felt differently tonight. If I would have watched this 2 years ago, when you were healthy, maybe I would have thought this movie was so gut wrenching and sad that I would have left the theatre a wreck. Tonight, I almost laughed out loud at some of the scenes. I was also so distracted the ENTIRE movie by Nicole Kidman’s overly plumped up lips. What do they use to inject lips with these days? Collagen?? I’m clueless to things like that but whatever it is…. all I have to say is WHY??? I could not focus on the movie because her lips distracted me the entire time. That lady is so pretty. She is so pretty without those pouty lips. They took away from her character. Hollywood botched that one fo’ shizzle. But they managed to throw in all the stereotypical things that you would assume parents go through when losing a child. The struggle with GOD. The stupid shit people say like, “God needed another angel.” “This was God’s plan.” “He’s safe because God is taking care of him.” Nicole Kidman did freak out in a scene where a god comment was made. It made me laugh because for .1 seconds, her character reminded me, of me. They went on to show the stress it puts on a marriage. No shit. Really???? The time frame of moving on and packing up a room and getting rid of clothes. The Grief Support Group. The friends leaving. The fights with family. YAY FOR HOLLYWOOD! You got it right on the generic surface level. Who wrote this movie? Did they not get any input from real parents who are surviving something like this?? I think not.

They left out so many things, Ronan. They left out how after you lose the most precious thing to you, how the world around you literally feels like it is caving in, every second of the day. How after each day you survive…. because it is only about survival in the beginning…..how you fall into bed, and pray to anyone who will listen, not to wake up. For somebody to have mercy on you because out living your child is not something you signed up for. What about the sleepless nights? What about the pacing around the house, constantly looking for you?? What about the days that you cannot even leave the house because you cannot stop throwing up? What about the obsessing about what you could have done, differently? What about the buckets of tears that are never-ending and you swear you are going to choke to death on them? What about the way you don’t ever escape your own head and how you wish for anything but this life? How you wish to be beaten, raped, tortured, burned alive….. how you would endure any kind of pain to have your child back?? What about the way that this reality is so much…. too much…. so some days you spend the entire day, pretending like your child is still alive because on those days knowing that they are dead, it is just too much to handle. What about they way you feel so alone, even though you are surround by the most loving people on earth. What about the shame, anger and guilt that want to destroy you. What about how everyday is a fight. How you feel like you are swimming against the tide, day after day. How you have to watch as the people who care about you, look at you with pity… worry… and sadness. How you long to feel things like happiness again and wonder if it will ever come. But then you also wonder if you even deserve it. They forget to portray how the most simple things, become so difficult. How even remembering to breathe, is a struggle. What about the physical pain? The way your entire body aches. The way your throat feels so tight and dry. They knots that are up and down your back. The way your head feels like it has been in a vice. How you watch as everyone around you, goes on with their lives and how hard it is to see. How everyone expects things from you and doesn’t understand why you can’t come to holiday celebrations, birthday parties, dinners, etc….. Please, somebody cut the bereaved parents out there s0me slack. How nobody understands how hard it is to just function, let alone deal with all the social pressure of “moving forward.” How nothing is normal anymore and everyone needs to stop acting like it is. How your dead child, is so easily forgotten and how people just seem to want to ignore the fact that they existed. As if this will erase the pain?? Never. How you are blinded by survival because that is all you are trying to do, is survive….. for as much as you don’t want to. Because I know if you are a mama or daddy who has lost a child, you have wished to not survive this a thousand times. They didn’t touch on what it is, that makes a bereaved parent, go on with life. Is it Fear? Hope? Love? Guilt? Beliefs? All of the above, maybe? I’m still trying to figure that one out.

Ro baby. Did you see us on Saturday? We brought a tree and decorations to PCH and decorated a tree, in your honor. It was the best tree, we’ve ever had. It was so hard to do. It is on the 7th Floor of PCH. The Oncology Floor. We saw Dr. Eshun and gave him a hug. I love that man. Kind eyes. Kind smile. Kind soul. He is not only a good doctor, but a good man in general. I am so very thankful he was the one who had the privilege of taking care of you. I know he will never forget you. Your Dr. Maze came up to see us. I tried to ignore the tears in his eyes as he gave your Daddy a hug. Fucking Mother Fucker Cancer. I hope your tree will make some kids, smile. I put some special Captain Rex’s in the tree, just for you. I love you. This would have been your favorite tree, ever. Why haven’t we always been decorating our Christmas trees, in a Star Wars Theme? It made so much sense on Saturday. I was mad at myself for conforming the years before with traditional trees. Why is it, because you are dead, that the tree we did for PCH, was our best tree ever? The most fun. The most like you and your brothers??

Alright little one. Much more to write, but I need to try to sleep. I am driving up to Sedona tomorrow to see Dr. JoRo so I need to try to sleep. We watched “Elf,” tonight with some friends at the Montelucia Resort. I missed you every second. I cried. Your daddy cried. Everything in that movie, reminds us of you. It was one of your favs. I used to love how you would always quote Buddy the Elf. You would always say, “Mom. You stink. You smell like beef and cheese.” I would then, tickle you until you could take no more. I’m sorry we had to be there tonight, without you. I’m sorry we have to go out and do “normal,” things without you. I thought it was going to be a good family night. I am trying to make us do more of those things. Everything just feels so wrong, Ronan. I love you. I miss you. I hope you are safe. G’nite baby doll.

This slideshow requires JavaScript.

Where is Ronan?

Somehow, I am in my cozy bed at my house. I cannot get out of my bed. It feels like quicksand and even when I try to get up, it pulls me back down. My house and heart feel really empty. I hear people, but the biggest voice of all is missing. “Where is Ronan?” That is what I asked Woody. He just starts to cry. But really, where is he? Is he playing in his bedroom? Is he in the backyard? Is he causing trouble and running about the house? Is he playing Star Wars with his brothers? Then I remember. Ronan is gone.

Ronan really left a couple of days ago. His pain got really bad from his little liver failing and all we wanted was to keep him comfortable. The Ryan House was quiet but full of the people who are our family. Charisma spent the weekend, Susie came, Gay, Melissa, Stacy, Bethany, Tricia, Sarah, my mom, Mimi, Papa, Uncle Scottie, Auntie Karen, Aubrey, Marisa, Danielle…. I cannot remember who else. Mother’s Day was quiet and I stayed by Ronan’s side most of the day. I whispered a lot of things in his ear and although he was not responding much anymore, I know he could hear me. I told him all the things that filled my heart. How he was the best thing to ever happen to me, how he changed my life, how it was time to stop fighting, and just relax because I was going to take care of him forever. I sang to him, loved on him, and said our famous little thing we always said to each other, “Just you and me, baby.” As I sat next to him I prayed so hard. I asked for a few things. I asked him to please not leave me until Fernanda returned from her trip, I asked for him to please not leave me on Mother’s Day, I asked him to leave peacefully in the night, with me by his side. I begged the Heavens above to not be cruel in the way that they took him. He had enough and I wanted him to go in the most peaceful way possible. For the first time in his life, my little boy listened to everything I asked of him.

Quinn spent most of Mother’s Day curled up beside Ronan. I explained most of what was going on to him. He wanted to know why he couldn’t understand what Ronan was saying anymore and when he would start talking normally again. I told him that he was so sleepy, that he wasn’t going to be back to the way he was anymore. Quinn cried and slept most of the day away by Ronan’s side. He needed to have his time and his goodbye with him so I let him take all the time he needed. It was hard to watch my almost 8-year-old hurting so badly but it was a chapter that he needed to close in his life with Ronan. I wasn’t about to push him away. I talked to Liam about staying at The Ryan House with us or going home. He said he wanted to stay to be with Ronan and us. I told him how Ronan was not going to get better and that he needed to say his goodbyes. Little tears filled his eyes and he said he knew, but he still wanted to be with his brother. After 8 months of shipping my twins off I had decided that enough was enough and they would stay with us as long as they wanted. Fernanda had a firm talking to with me about this decision. I told her I would meet her halfway and only let Liam and Quinn see so much and how they would not be allowed to sleep in the room during the night with Ronan and myself anymore. They would have to sleep with Woody in the room across from us. She seemed happy with that outcome.

After a quiet Mother’s Day, night soon filled the air. I slipped out and let Mimi and Papa lay with Ronan and I tried to calm myself as much as possible. I was panicking, trying to come up with what I could do to save him and his little body that was failing. I asked for oxygen to be placed by him, to help with his breathing, I texted back and forth with my friend, Doriet, whom just lost her little girl. She was giving my ideas on ways to save him. I talked to my friend, Diane, who lost her little boy to this nasty disease years ago. I said things to her like what if he really didn’t want to go, but was fighting to stay alive and I was just pushing him down with all the pain medicine. She calmly talked me off the ledge and told me that the cancer had invaded his liver and there was nothing medically we could do to save him. I was still fighting for him, even though I knew he was ready to go.

I sat in the Sanctuary room with the girls for about an hour last night. Fernanda, my mom, Melissa, Sarah and Tricia. We had a lot of laughs and Sarah told us how she was getting a purple star tattoo this Thursday, on Ronan’s birthday. Before I knew it, everyone in the room had decided to go with her. This made my heart happy as the love of the people surrounding me is unbelievable. They truly are the most amazing girls alive. Around 10 p.m. it was time for me to get back to Ronan so everyone left except Fernanda who said she would stay and watch Ronan sleep so I could get some rest. I had the twins come in and kiss Ronan goodnight and I curled up beside him. I whispered little things in his ear and sang to him. I fell asleep as I could relax a little knowing Fernanda’s watchful eyes were on him. His breathing was becoming softer, his little feet were becoming so cold. Fernanda sang to him and rubbed him. I fell in and out of sleep. She left the room about 3 a.m. and the nurse taking care of Ronan patted me around 3:20 a.m. Ronan was ready to leave. I said to her, “Is he gone?” She replied, “Almost.” I grabbed on to my baby boy, whispered in his ear that I loved him, but it was time to go so he needed to come with me. I kept saying, “Come with me, Ronan. Let’s get out of here.” The nurse went to get Woody and when he got to the room, he kissed Ronan goodbye and that was that. His little heart just stopped.

Somebody came in asking if she could bathe Ronan with warm water and if we wanted his clothes changed. Woody left the room to make phone calls and I asked if I could please give him his bath. She said of course and brought me everything I needed. I stripped him down and washed his little body. I remember looking up at her and saying how no mother should have to do this. She replied, “You’re right. You are very brave.” I remember thinking to myself how I couldn’t believe I was giving my dead child a bath. It was so weird, yet so peaceful. I put on his favorite red Small Paul monkey pants, his Star Wars shirt and little Ralph Lauren socks. I kissed his cold little lips a dozen times and kept thinking I couldn’t believe I wasn’t ever going to be able to kiss them again. Woody came into the room and we sat I just stared at our son. We cried, held each other while looking down at his little body. I kept feeling him and kept telling Woody he was so stiff. It was all surreal to say the least; but I felt like Ronan was right there with me. Just because the shell of his body was gone, his spirit was still in the room. It has been with me the entire day which is maybe why I feel so at peace.

Leaving the room was the hardest part. Woody said his friend that he went to high school with was waiting outside as they were ready to take Ronan away. I told him that I wasn’t leaving him and he grabbed on to my arms and tried to pull me away. I cried that I promised I’d never leave him and it took awhile for Woody to convince me that he was already gone. I went and kissed his toes, lips, and pinky fingers one last time. I walked out of that room and went straight into the arms of Woody’s friend, Ardra, who runs the mortuary. I held onto her and told her to take good care of my baby boy and not to leave him. She cried with me and promised she would. I walked away before I saw them carry out his little body. I went into a room where my mom, Kay, Charlie, Scottie, and Auntie Karen waited for Woody and I. We sat for a while and no words were said as they were not needed. Woody and his family went to pack up our rooms and I sat with my mom and Karen. We talked quietly about what had just happened. We talked about Ronan and his life and how he had inspired so many people. That little boy taught me more in his almost 4 years of his life than anybody I have ever known. He was the proudest, most beautiful child that has ever touched this earth.

After Ronan’s body left The Ryan House, we had to go and wake up the twins. I quietly tapped Liam and told him it was time to go home. He was confused and I did my best to explain things to him. Woody picked him up and carried him out of the house. I snuggled with Quinn a bit and woke him up and said the same thing. He wanted to know if Ronan was coming with us. I explained to him that Ronan would not be with us anymore. He cried and it took awhile to get him out of the bed. He said he needed more time and I gave it to him. I had Ronan’s “Gigi,” in my arms and I gave it to Quinn and told him he could have it now. He wrapped it around his shoulders and I told him he could go into the room where Ronan had been and kiss his pillow. He did so and also laid down on the bed where Ronan had been hours earlier. I let him take his time and Woody then came and carried Quinn out into the car. The four of us drove home together as the sun rose. Ronan’s car seat was no longer in my car and I sat with Quinn on my lap and watched as Liam sat in the back as the tears poured down his little cheeks. We talked a little bit on the way home about Ronan and how he was no longer hurting and how peacefully he went to sleep. We all stumbled in our house and I insisted that we all lay down together and get some sleep. Liam tried to go to his room, to be alone but I told him that was not happening as we all needed to be together because we were all hurting. He listened and snuggled up between Quinn and Woody. I took some sleeping medicine and passed out for most of the day.

I sent my Mr. Sparkly Eyes a text and told him how I could not get out of bed. I asked him how I was ever supposed to face the world again as I never went anywhere without Ro, my little partner in crime. I don’t know the answer to this but I know Ronan will help me in everything that I do. He will guide me for the rest of his life just like he did his entire existence. Nothing I do will be without Ronan’s help and the love that we have for each other. It is eternal.

I know I don’t want to end this story. I want it to go on forever. I want Ronan to never stop inspiring you all just because he is gone. I want his name and our love story to live on forever. I want to keep writing to all of you. I hope that is o.k. I’m not sure what I will write about as that child was my life. But just because he is not here, does not mean our story has to end. He is with me and will continue to fill me with his love everyday. His love alone will keep me going and strong. I will not crumble up and die because he is not here. I will not let him down and I promise to make him so proud of me as I know he is watching everything that I do. Those eyes will forever be burned into my soul, the smell of his sweet skin, the touch of his perfectly plump lips and his little giggle will never be forgotten. My twins will be better boys because of him, my marriage will be stronger, and I will never take a second of my life for granted again. I would give anything to have him back and I don’t know if it has even hit me that he is really gone. I find peace in knowing that he is no longer hurting but cannot deny that my heart is broken beyond repair. All I want is my child back. My healthy child back before all of this.

I feel very angry and let down by a lot of people; but mainly by medicine and the doctors of the world who have not figured out this nasty disease. Mostly life in general as I have learned the hardest way how cruel it can be. Watching my child die from Neuroblastoma t was the most horrific experience of my life and nobody should have to go through that; especially in this day and age. I made a promise at the beginning of all of this to help find a cure and now I am more determined than ever. A cure begins with awareness and funding so I am going to work for the rest of my life on that part of all of this. All in the name and honor of my Ronan Sean Thompson. The brightest star in the sky.

I cannot thank all of my friends and family enough for their love and support through all of this. I would not be in such a peaceful place without them. I have no doubt that Ronan’s journey is not over… it will just come in a different form now. I cannot thank all of you who have been following me this blog and spreading the word about Ronan. We love you all so much. If you see me, please don’t be afraid to come up and tell me hello and hug me. Please don’t be afraid to tell me how sorry you are because of the pain you know we are all in. But please, don’t tell me things like God has a bigger plan for Ronan, how he belongs in heaven, how he is happy with God now…… because all of those things just piss me off. And I will punch you. I will never come to peace with any of those fucking saying and unless you have just walked through my exact shoes, you have no right to say those things. I understand if it is how you will make sense of all of this but to me, you can’t make sense out of nonsense and that is exactly what all of this is. Complete and total nonsense. This will never make sense to me as I know our family did not deserve any of this pain; especially not Ronan.

That is all for tonight my loves. Goodnight to my sweetest baby boy; Ronan Sean. My little seal, my little monkey, my little everything. I love you to the moon and back a million times over.

xoxo



Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Please don’t leave me

Please tell me today didn’t happen. Please tell me I didn’t have a conversation with my husband about what we are going to do for Ronan’s services. Please tell me I then didn’t go to Hava Java and sit with Fernanda, Stacy, Marisa, Danielle, Tricia, and Macy about planning everything. This all happened so fast. Too fast. All I want is more time with him. I am so scared now. I’m left with nothing except for waiting for my baby to go. He spent all of today in my bed, sleeping, and crying out in pain. Morphine, Morphine, and more Morphine. I couldn’t get him out of my bed so I sat with him, rubbed him, and tried to comfort him. Nothing was working and I couldn’t talk him into going outside, playing with his brothers or anything. I texted Dr. Maze and asked him if it was the Morphine that was making him so tired or was it because he is getting close to dying? I almost threw up writing out those words. He responded back it was the Morphine. I don’t think he would have told me otherwise as I know he does not want to say those words to me. I decided that I was not comfortable with Ronan being home, as his pain is not getting better. We have taken him down to the Ryan House where they can hook him up with a drip of some stronger pain medication. I’m not sure how long we will stay here, but it is such a gorgeous place, for being in the worst situation. Woody and Tricia dropped us off. I spent the evening trying to get Ro comfortable. It’s not working. Nothing is working. I have been rubbing his leg for an hour, listening to his shallow breaths, watching him twitch and whimper in his sleep. I’ve been talking to him all night, telling him I’m not going anywhere and neither is he. He is hurting so badly and all I can do is hold his hand and rub his little body. Aubrey came by tonight to sit with me and love on Ronan. He knows there is not much time left even though he refuses to tell me. I can read that man like a book and he doesn’t even have to say a word. His eyes say it all.

I’m trying to be strong for the sake of Ro. I’ve done an o.k. job but tonight, I lost it in front of him. I was whispering to him about how he cannot leave me, how he promised. How we had to fight and still be strong so we could always be together. The tears were pouring down my cheeks. He looked up and goes, “Please don’t cry. You’re making me sad.” Ugh. Wise little man. I stopped, until he then told me the the medicine he is taking is making him so sleepy that he can’t even play and that is making him sad. Unreal. All of this. I am so desperate at this point… there has to be someone out there who can help my baby. This cannot be the end. I cannot let go so soon. I need more time with him, so a cure can be found and he can be healed. I cannot lose my baby. Please God. Let him stay here with me; he is so happy with us. Our lives will be so empty without him.

I cannot get Ronan comfortable. He has tossed and turned all night, asking to go home. We had Mimi and Papa wake the twins up around 10 and bring them down here to stay with us as Ronan was begging for them. Quinn is sleeping with Ronan and myself. Liam is in the room right next door with Woody. We are keeping the twins home from school tomorrow. They need all the time with Ronan they can get. We have still not had the talk with them. I keep finding a reason not to do it. Once it is done, that means this is real and I am not ready to accept that yet. I’m not sleeping. How could I possibly sleep at a time like this? I have to watch Ronan at all times to make sure he is still here, he is still mine. His breaths seem labored and forced. His tummy is hurting and he seems confused. He told me tonight that he wants to go home, but doesn’t want to have to get back on the airplane to do so. He also told me I wasn’t saving him. If he only knew how I am trying everything I possibly can to save him.

I’m having Woody call Doctor Sholler tomorrow. Her name was thrown around quite a bit tonight when I put out a desperate post on the Neuroblastoma website. She is supposed to be one of the doctors that thinks outside the box. Woody seems to think that nothing can be done, but I refuse to believe that. Somebody out there has to be able to save my Ronan. I’m not accepting anything until I hear it from everyone I possibly can. I’m not giving up on him. I’ve got to get him more comfortable so I can buy myself some time. I cannot stand seeing him in pain.

He is awake, he is restless, so I am going to rub him and sing to him. G’nite Twinkle Twinkle Little Stars. I love you all so much.

xoxo

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo

Never-ending tears

How much can one little person endure? It’s amazing because the strength of Ronan seems endless. All he has gone through so far… all he is going to have to go through still. I am exhausted just thinking about it. He is back getting his bone marrow aspirates done and MIBG scan as well. I didn’t tell him until we arrived here what was going on. He cried and said he did not want his sleepy medicine unless Dr. Maze gave it to him. I knew he was going to be upset about that. He was more than upset. He  threw himself on the floor while the tears poured down his cheeks. I told him we could call Dr. Maze and he could talk to him if that would make him feel better. He finally calmed down after that and we made the phone call. Nevermind the fact that it was 6:30 in the morning back at home. I put Ronan on the phone and watched his little face as Aubrey talked to him. It lit up and he kept saying o.k. and nodding his head. He then told him, “I love you,” and handed the phone over to me. I have no idea what was said to Ronan, but it worked for the time being and calmed him down. We were soon called back to the procedure room and I was able to hold Ronan as the doctor put him to sleep. I left the room freaking crying. Time to get used to all new doctors, people, nurses, etc….. We are so attached to our angels at PCH. I already miss Sharon, Kristen, Dr. Maze, Erica, Dr. Adams, Dr. Eshun, Elaine, Patty, and “A,” so much. They have been our family for 7 months now and here we are starting all over. I didn’t think it was going to hit me so hard, but today it did. Especially leaving Ronan in the anesthesia room with some new doctor whom I’m sure I’ll never see again. Don’t get me wrong, Sloan is beyond amazing. But this is going to take some getting used to.

Lovely. Lovely that I am a blubbering mess today. Lovely that as soon as I was called back to see one of Ronan’s main doctors, Dr. Modak, to sign papers for blood work that I immediately starting bawling. Lovely him took my hand and said “Tell me what’s wrong.” I couldn’t even get the words out because everything is wrong. I just told him I was worried about this arm pain of Ronan’s. He pulled up the latest  MIBG scan for me immediately and we looked at it together. I’m sorry, but nobody at PCH would have done that for me. As much as I love them, the fact that Dr. Modak was able to pull up the scan in 2 minutes and discuss it with me was something that would have never happened so quickly at PCH. And it should be that way. It should be that way everywhere. I should not have to wait days for results. We went over the new scan and he showed me that nothing has progressed. If anything, it looks slightly better. I was able to stop crying for the rest of the time while I was in his office. At least I can have that peace of mind for the moment. I was sent down to the blood donor room to have my veins looked. I made it halfway there before I started bawling again. The nurses kept offering me orange juice to calm me down. Made me laugh to say the least.

My friend, Ed, is in the city today and should be here any minute. There is no way I am going to be able to hold it together for him. He lost his little boy Jack to Neuroblastoma a few years ago. He and his wife have been so supportive of all of this even though we hardly know them. They are 110% behind our Sloan decision which makes me feel very good and just confirms that we did indeed make the right decision. I only was able to see Ed for a few minutes due to Ronan waking up from anesthesia as soon as he arrived. He woke up grumpy like always and wanted to just go back to the hotel. I grabbed the Starbucks Ed brought me and he helped me with the stroller downstairs until I was able to calm Ronan down enough to put him in it. What a sweetheart. We were planning on going to lunch but Ro baby was not having it. Ed grabbed a cab and we headed back to our room. I tried to get Ronan to rest a little bit but he was hell bent on going to FAO Schwartz. I bundled him up, threw him in the jogging stroller and ran up to FAO. We stayed for about an hour. He was tired and is in a lot of pain from his bone marrow aspirates that he had done today. He keeps asking why they put needles in his body. UGH. He is hurting tonight which kills me. I hate seeing him in pain and I know it’s bad because he never complains. After FAO, we ran back to our “hood” and went and grabbed our favorite pizza. He ate a lot as always and now we are back in our room. It is freezing out there and I am so exhausted today I swear I could fall asleep right now. It will be an early night for sure.

Woody is flying out tonight to NYC because Dr. Modak needs his blood by tomorrow. Nobody in Phoenix can send his blood that quickly so he is just flying in. Ronan has a CT scan at 11:30 tomorrow and we will fly home with Woody tomorrow evening. I hate to admit this; because I like to act like I’m such a tough ass and have everything under control; but……. these 3 days without Woody have been SO hard. I sometimes take for granted how helpful he is to me but I swear, never again. I could NEVER survive this without him. I miss him terribly and I am so insanely blessed to have him as a husband. He truly is the best thing to ever happen to me.

That’s all for tonight. An early update because I hear a hot shower and a very early bedtime calling my name. So thankful that todays MIBG scan showed no progressive disease. Maybe I will sleep a bit better tonight. I am anxious to get home, I feel like I’ve been gone a year.

xoxo, sweet friends.

P.S. Biggest HAPPY BIRTHDAY loves to my New York Miss Macy. This city is not even close to being the same without you:( Miss you so much. Kisses from NYC!

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms

Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.