Say Cheese! Or F U Cancer!

http://youtu.be/ufcBBd_Vh_w

Life’s not about waiting for the storm to pass…It’s about learning to dance in the rain while jumping in some mother fucking mud puddles.

Ronan. About 3 weeks ago, Dr. JoRo said to me, “Hey, do you want to hike Mt. Wilson with me, on April 26th?” I didn’t even look at my calendar. I just gave her an, “Absolutely.” I didn’t even know what Mt. Wilson was, except for it was in Sedona and I knew it would be an adventure. I could not have imagined in my wildest dreams, the adventure it would turn out to be. I woke up this morning at 4:30 a.m. I quietly threw together my things and headed out the door for the drive up to Sedona. A drive that I have come to love so much. It started to rain on my drive up. Dr. Jo said it might rain today. “That would be the best!” I said to her. I arrived to Jo’s around 7 a.m. She was all ready to go and we called her neighbors to see if they were ready to meet us. They were, so we all piled in their truck and headed out for our little hike. I had on shorts, a tank top, my purple coat and your backpack full of water and your GiGi. This is Arizona, it’s April, and it’s been hot. We don’t really get rain in April, so my outfit seemed appropriate.

We quickly arrived at Mt. Wilson. At 7,122 feet, it is the highest of all the mountains in Sedona. It is breathtakingly beautiful. We started our hike and for the first 10 minutes, I was warm. I was a little bummed out that the sun was starting to peak through. I unzipped my jacket and went, “Here comes the mother fucking sun. Again.” I was really needing a break from the inferno today. Up we went. Dr. Jo climbed a tree to hang some of your bracelets on it. I started snapping some great pictures of her. She is such a little spicy monkey, like you. On her way down, snap went the branch due to it being all rotted and dead. She fell, but caught herself just before landing right on top of a cactus. We starting laughing and the first war wounds of the day, were earned. I noticed the clouds rolling in and the rain that started to trickle. A smile spread across my face. We continued on. Within minutes, the sky had turned and we were getting rained on like I had never seen rain before on an April Arizona day. I was snapping pictures, left and right. We both kept stopping to take in the views. Soon the thunder and lighting started up. “It’s Ronan,” I said. “He’s mad.” Pebbles started hitting us in the face. “HOLY HAIL!” I cried out. “I told you he was mad! Ouch!” It was hailing on us, hitting us both in the face, and we were laughing. The wind started howling and whipping around us. We still had a couple of hours to go up the mountain. The rain did not let up. At all. We were sopping wet from head to toe, but we still continued on, determined to make it to the top.

I felt like we were transformed to a bunch of different worlds today. I said to Jo, “I feel like we are walking to the end of the earth.” She agreed. I am quite certain, that it was you today, Ronan, whom was in charge of this weather. You know how the dreary, rainy weather is one of my favorite things in the world. You know how much I miss it. You know how much I miss you. I think this was your way of crying for me and letting me cry for you. With the millions of tears that poured down on me today. The millions of tears that will never add up to all the tears that I’ve cried since you’ve been gone. Today, the weather was your tears and my tears, combined. Together, the sky and the heavens above, wept for us.

Dr. JoRo summed up our hike like this:

Ecopsychology. Bear. Gigantic falling trees. Hail. Raining four straight hours. 40mph wind. Sloshy mud. Lightning. Tree climbing. 17 miles, and 7000+ feet. 35 degrees. Muddy falls. Drenched head to toe. Never done anything quite like this. It was good to do for a very special little boy who is loved and MISSed. Pilgrimages of remembrance don’t get much better than this. — with Maya Thompson.

It was all of those things and more. So much more than I could have ever imagined. Once we got to the top, it was so cold that we could see our breath. We were not prepared with any water proof clothes, our lips were blue, and pretty much every body part was numb. I could not feel my legs or hands. I think I may have thought to myself, “There is no way we are going to make it down this mountain. They are going to have to send a search party.” We stayed at the top but not for long. Between the rain that was coming down and the wind, it was almost unbearable. I started to lead the way down the mountain. I stayed with Dr. Jo and her neighbors for a bit but I needed to run. I felt myself getting angry and sad and needed to take out my energy on something. Soon, I started running and didn’t look back. I ran as fast as my feet would carry me. I jumped over broken down tree stumps, over boulders, through sticker bushes, slipped all over the place in the red mud that felt like quicksand on my feet. It just continued to pour down rain and did not let up at all. At one point, I had to pee so badly, but it was hailing again. “Oh fuck it,” I said. Down came the shorts and my bare ass was pelted by the hail coming down. I busted out laughing. Today may have been one of the craziest things I’ve ever done in my life, besides skydiving. Bare ass in the air, covered in mud, drenched from head to toe… so totally badass. I felt like I was on some adventure extreme sports show, roughing it in nature. I would have totally beaten all the other contestants today, Ronan…if it had been a competition. I would have beaten them all, done anything and everything, to get you back. That’s how I felt going up that mountain today. Do not stop. Keep going. You are not cold. You are not in pain. You are alive. So you don’t get to have any excuses. You don’t get to wuss out. You don’t get to give up or turn around. You can do this. Ronan would give anything to be here, living life, growing up, and doing these things. He doesn’t get to, so you have to do them, for him. I continued sprinting. I had a baggie of your ashes with me. I haven’t ever spread them out anywhere before, besides the lockets that I wear and the one I gave to Fernanda. I carry your ashes with me, a lot of places, but never leave them anywhere. I wasn’t sure if I was going to or not today. It just didn’t feel right. At one point, I was running so hard and so fast that my legs felt as if they were on fire. I turned a corner and it was out of nowhere, the most beautiful field of the brightest yellow wildflowers appeared. They were so bright, that it was almost blinding. I stopped dead in my tracks. Yellow. Bright yellow. Scatter them here, on top of these flowers. I did. I know you know why. It was the perfect spot. I kissed the top of the flowers all covered with some of your ashes. Just as I did this, the rain started pouring down so hard that I could hardly see. I started to cry. I told you how sorry I was. How much I love you. But mostly how sorry I was. How sorry I will be for the rest of my life. You should be here. I should not. I’ll never understand why this was you and not me. You did not deserve any of this, Ronan. I would have given anything, for this to be have been me. Anything and everything. Fate is cruel. Fate is not kind. Fate is a fucking asshole. Especially when it comes in the form of sweet, innocent babes getting cancer. And then dying from it. Fate can go and get fucked.

I ran as fast as I could down the mountain. I had painted mud war stripes on my face. I live in a war, everyday of my life. They were necessary to wear today. They made me giggle. I purposely jumped in every single huge mud puddle that came my way. I did this for all of you, of course. I laughed out loud. I pictured you watching me and what a sight I’ll bet it was. My purple jacket, against the red contrast of the red rocks, flying down Mt. Wilson today in the pouring rain, laughing, crying, screaming… but most of all feeling something other than the fucking pain I feel 24 hours a day. Feeling something other than feeling dead. Today, I felt alive and it felt alright. And I don’t need any kind of bullshit medication to make me feel this way, Ronan. You know what I need? Exactly what I’ve been doing. Nature. Exercise. Mindfulness. Pain. Honesty. Love. I will survive this, thanks to those things and nothing else. Nothing else that comes in the form of a pill anyway. A pill for grief is absurd. A pill for grief is madness. A pill for grief will only create a bigger problem. There is a simple solution, really. It’s called how about feeling, what you feel, when you feel it, and facing it head on. That’s what a brave person would do. That is what a strong person would do. Those are the two things, you kept saying over and over to me in my head today. I heard you about 50 different times. “Mama. You have to be brave and strong, because I was brave and strong.” I know, Ronan. I know. I hear this a lot from you. I’m listening.

So, today. Today was one of the best days of my life that I have had, since losing you. I learned that I am capable of so much, Ronan. I can do all of this and I know this due to having days like today, which don’t happen very often. I went back to Jo’s after our hike. We showered, ate, played some ridiculous card game, laughed so hard that at one point, her son, Josh, fell off of a chair. I would not be doing alright without her, Ronan. She is such a huge factor in this process for me. She has this grief thing figured out and the funny thing is, it really has nothing to do with science. It has nothing to do with medication. It has everything to do with love, compassion, empathy, pain, laughter, passion, and just letting one find their own way. Whatever that may be.  Without the judgements.

It’s super late. I’m so tired from today. No Ambien for about a week now. Good girl. I hate that shit. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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A promise and a baby lizard.

 

Ro baby. Hi. Hola. I cannot believe you are not here. I cannot believe you are really gone. I hate this so much. I’ve had a lot going on. I’ve done my hiking everyday or every night just like I said I would. I’m proud that I’ve stuck with it and have not missed a day. Even on the days that I have not been feeling well or have been too sad, tired, sore, or it’s too late. I don’t care. I have made myself climb that mountain, every single day. I have no excuse not to. I broke the most important promise in the world to you, which was how I promised to save you. I’m not breaking this one. I will spend the rest of my life, fulfilling the promises I make to you. It’s one of the things I take very seriously in this oh so insane life without you.

I had  a board meeting yesterday. It was productive and fast. We are getting a lot of things done. I made it through yesterday by the skin of my teeth and a very long, hot hike. I’ve slept the past 4 nights without our little frienenemy, Ambien. Yay me. My sleep has been horrific though. So many intense nightmares. I cannot even think about them without being sick. A lot of them have to do with you being tortured and I cannot get to you, in time to save you. I wake up scared and sad but I’m back to fighting off having to take Ambien. I don’t like taking any kind of prescription sleep aids. I’m back to trying to suffer through sleep, without their help. Dr. Jo is happy about that. I am too.

I spent today running around, getting things done. It seemed everywhere I went, I was surrounded by babies. It was weird. It made me really sad and miss you. I met Rita for lunch. I was waiting for her and I texted her something like, “Fucking babies everywhere.” She said we could go somewhere else. I told her no. That I would just ignore the babies. She got to the restaurant. I think she saw the look on my face as sweet innocent baby #1 was right behind me. She sat down. She looked at me and goes, “Oh my god. Whatever you do, DO NOT TURN AROUND. They just took their baby out and it is a lizard. It’s not even a human. They had a freaking lizard for a baby and it is disgusting.” I started cracking up. The baby lizard story continued for a few minutes while the laughter escaped my lips. It was a really, really, good story. I almost believed it. That Rita of yours, knows just how to make me giggle when I need it the most. #Thankful (hashtag, right Rita?)

After lunch I ran to see Dr. JoRo. We sat in her office and hashed out what has been going on. I cried. A lot. She asked what we were doing, this time last year. I told her. She asked me if I had written it down. I said I am pretty sure I had written a blog entry. She asked if I minded if she looked it up, from around this time, last year. I told her I never re read what I wrote, but sure. She found an entry. She read it out loud. She had to stop a few times, to compose herself. I just sat quietly and let the tears slide down my cheeks. I closed my eyes and pretended like I was listening to someone else’s story. Please don’t let this be about us. Please don’t let this be about you. I begged. I pleaded. I opened my eyes. There your little obituary sat on the same place it always is. Right in the middle of her desk. This is our story and it fucking sucks. I don’t care what good comes from this, Ro. All I want is you back here with me. More than anything.

I’ve been making plans though. Plans for your birthday, plans for our trip, plans for summer, plans for this marathon of madness. Lots of plans. Lots of plans that I don’t want to make but what choice do I have? I have to do these things for my sanity and for the sake of your best brothers, who deserve to have as normal as a summer as possible. I saw your Sparkly. I had your GiGi with me when I saw him.

“Why are you carrying that around? I’ve never seen you do that.”

I had it draped over my neck.

“I need it today. It smells like him. I take it a lot of places. I just don’t pull it out in front of you.”

He gave me that curious/sad look that I get a lot. We chatted about some things that have gone on/are going on. I sat quietly and let him talk. Sometimes I need to do that. Sometimes, I don’t have much to say because it’s all I can do not to choke on my tears. Sometimes, it’s just good for me to sit back and listen. He may have told me sometimes he wants to ring my neck due to certain things that tend to just come flying out of my mouth. I told him I knew. I apologized for my non existant filter that does not exist around him. I asked him what was I supposed to do? I told him to stop telling me I was going to be fine because that is what he is always telling me. I finally got him today, to admit that I am not going to be fine. He told me today, “I know you are not going to be fine. I’m not telling you this ever again. I am going to tell you what I know about you and that is you are going to survive this. You will survive.”

I buried my face into your blanket. I spattered out the words, “May. How am I going to do May?”

“You know how you are going to do May? With Ronan. Ronan will get you through May. Nobody else. You have to trust that. He is not going to let you down. He is going to get you through May. I promise you that.”

I looked up, my eyes burning with tears. I quietly said, “O.k.” and nodded my head. I trust his words. I trust you. I have to, Ronan. I just wish I didn’t have to. I just wish I had you back here with you trusting me, because that’s the way it should be. It should not be like this.

I fell asleep, baby doll. I miss you. I love you. I hope you are safe.

xoxo

We don’t need many words for this, Ro. Our fairy RoMo is a gift. Thank you, K. For our night. You are so beautiful. xoxo

http://youtu.be/7nxO-yPQesA

The Letter

Ronan. It’s almost tomorrow. Tomorrow. I don’t remember very many dates well anymore. I remember tomorrow. I don’t go back and read this blog. But I can only imagine what I had written on this day. I remember everything about tomorrow, last year. It was your scan day. We were anxiously awaiting to see how the ICE had made your cancer so much better. We were anxiously awaiting the good news, that this very potent, ICE cocktail of poison, was killing all of your cancer. We were told it would. We trusted We trusted Dr. K. Oh, how wrong we were. In more ways than one.

Fernanda was with us. I went back and handed you off to the doctors so they could give you your sleepy medicine for your scans. I always hated this part. You would cry. You would beg me not to leave you. You would say you did not want your sleepy medicine. I held you tight, while they injected you and you fell limp in my arms. I set you down on the table and covered you with your GiGi. I left you so the scans could begin. I met Fernanda back in the waiting area. We hugged. We gathered up your stroller and things so we could head upstairs to wait for you and your scans to be finished. We sat and waited. It seemed like forever. She tried to distract me. She couldn’t. I was so nervous. Something was just not right. I spotted Esther’s mama over in the corner. I watched as she howled like an animal and started sobbing, hysterically. She came walking past me. I got up. “What’s wrong!” I grabbed her as she breezed past me. “They told us to go home. They said there is nothing left they can do. That’s it. She’s done.” Her eyes were wild with fear, unlike anything I had ever seen before. “That’s not it.” I held her close. “There has to be something else someone can do. We will find someone. We are not giving up!” She felt weak in my arms. I held her up as best as I could. She gave me a weak smile and said she would never give up. I fell back in my chair. I looked at Fernanda. “That’s it?! How can that be? They have to leave this hospital, knowing that there is nothing else that they can do? How can they walk out knowing that? I cannot imagine!” I felt like I was going to pass out. It felt like I had been so long since I left you for your scans. “What is taking so long? It never takes this long.” Fernanda even looked nervous at this point.

I watched the doors open from the scan room. I saw Dr. K in his white coat. I know he knew I was there, anxiously awaiting any kind of news. “There he is!” Fernanda exclaimed. “Go ask him!” My stomach dropped. “No.” as I watched him breeze right past me, no eye contact at all. It was as if I did not exist. My heart fell to the ground. I know what this means. I knew the second I saw him appear and he avoided me like the plague. Soon after that, we were sent back to get you. You were so grumpy. Your little bone aspirations looked so sore. “Why did they do this to me?” you asked, pulling at the bloodied band aids on your hips. “I’m sorry, baby. Mama’s here now. I’ll keep you safe.” I scooped you up in my arms. “You are safe now. Always safe with me.” You snuggled up to my chest. You asked for something to eat and drink. Your wish was my command. We took you to the main waiting room. We waited for your results.

“Dr. K will see you now.” I looked at Fernanda and we picked you up. We were taken back to his office. His back was turned to me. He fumbled. He couldn’t look at me. You were with me. I had to remain calm. I just looked at him. “No. No. No. No.” He paced back and forth. “The chemo didn’t work. It’s spreading.” I went into shock. “Well, what’s next? Because I know you have a plan. You promised me. You promised me you would fight for him, like he was your own. So, what’s the plan?” He still would not make eye contact with me. No apologies. He was a blank canvas. He called his assistant in. I think for liability reasons or something. I remember thinking how weird it was that she was in the room. “Does this ever get any easier for you? Ever? How can it possibly ever get any easier, to say these words!” I whispered as I did not want to worry you as you played in the room with some toys. “We are going back to Phoenix. We will wait to hear from you regarding what our next step is.” I got up. I gave him a hug. He was not worthy of my hug. I know this now. He did not care. To him, you were a number. A statistic. A lab rat. The second he realized that what he was doing, was not going to work, we were thrown out of that hospital, like we were garbage. And you want to know the sick thing, Ro. I think he knew months before this that his treatment was not going to work, but his ego was too big to admit this. I’ve still never gotten an I’m sorry. Even after the 5 page letter I wrote to him and the big picture of you that was sent. 2 little words. A sliver of compassion. Just to let me know, that you did indeed matter to him. But nothing. I will never be o.k. with this. That man owed you so much more. I will say I’m sorry to you, for him, for the rest of my freaking life. I’m sorry we chose him to help you. He was the wrong choice. He did not deserve to take care of you. You were too special. I will tell you that you mattered. I will tell you that you were not just another number or statistic. I will tell you how sorry I am. Do you want to see the little letter I wrote to him? The letter I’ve not gotten a response from? Well, I see no better time to post it then now. This is the letter I wrote to Dr. Kusher. It warranted no response. I don’t understand how that is humanly possible.

Dear Dr. K,

It’s been five months since my precious son, Ronan, died. I’ve sat with these thoughts all five months and feel it is now time to express them in an honest letter to you and your staff. As painful as this is for me, I need to write these words to you and I beg your pardon if they feel harsh, unfair, jaded, or blaming. I am a changed person since Ronan’s death.  Still, I realize that words fail to express the full breath and depth of a mother’s grief, so I hope you will be patient and understanding and compassionate as I wind my way through the many thoughts I have related to you, Ronan, and his care while at your hospital.

Did you know that the impact of his death is just settling in for me? The day of his death I was incapable of realizing- of understanding- what this would be for my entire life- or my husband’s life- and my other children’s lives. The pain has not waned. It has strengthened as the emotional numbing has dissipated and I’m only now beginning to comprehend this tragedy.  I wear a gold locket around my neck now- they contain my Ronan’s ashes. I wonder if you know what that is like? No, certainly not. Still, I spend a great deal of time wondering if you do.

I feel that you abandoned me and my family and mostly Ronan. Ronan is the love of my life, and you promised to fight for his life. You assured us you would endure with us. I entrusted you and your staff and your hospital with him. I surrendered his care to you so that through your research and treatment, you would save him. You presented it to me this way. You helped me to believe, to have faith, that you had the answers.

Do you remember my son, Ronan? I wonder this often. I know you have so many patients under your care. Let me remind you: Ronan was three years old and the most beautiful little boy to have ever touched this earth. Do you remember his eyes? They were the biggest, bluest, most sparkling eyes in the world. They were indescribable. They were so amazing that strangers on the street would stop us to look at him. I need to know- did you see him? Did you really see him? The love that he had for me- and me for him- was extraordinary. It was a love so powerful and intense that I truly believed that the power of our love could save him. If only it would have been that easy.

Do you know that we heard of you before we met you? From the second Ronan was diagnosed, your name was repeated in many circles. My husband, Woody, spent hours researching the best course of treatment for neuroblastoma. You seemed to be on our side from the very beginning. You earned our trust with your experience, wisdom, and data. Oh the data. You are a numbers man, and my husband appreciated that. You were supportive of all of the decisions we were making in regards to Ronan’s treatment. You assured us that you would be waiting with open arms if we decided to place our son in your care and that your hospital was always an open door to us. As a mother, I took comfort in knowing this.

Do you remember Ronan’s treatment? Ronan responded really well to the standard COG treatment protocol. It was only after Round 5 of chemo when we saw Ronan’s scan results and we decided the Standard COG protocol was not working.  We pulled him out of  the study and started him on another round of chemo to buy us some time. We were desperate. We flew to San Francisco to meet with Dr. Kate Matthey, to CHOP to meet with Dr. Mosse, and finally to you.  Dr. Mosse recommended MIBG therapy. However, you recommended your treatment and we ultimately ended up choosing your course of treatment.

Do you know that my gut- my mother’s intuition- told me I should have chosen differently? I wanted to go to CHOP and put Ronan in the care of Dr. Mosse. But your charisma and confidence were compelling. While you won Woody’s heart with data, you won mine with the ice cream cake you fed my son. You won us over by the way you looked us in the eyes and told us you would do whatever it took to save our son. That sealed the deal.

Do you know what it’s like to have your faith stolen? With all the faith in the world in both you and your staff, we packed up our most precious cargo, Ronan, and left Phoenix behind to entrust our son’s life to you. We felt absolutely certain and confident because you were absolutely certain and confident, nearing the threshold of arrogance. We believed that Ronan’s life meant something to you, something beyond a research participant or a data point. Our fears were allayed and we trusted that you were the one who would never give up on our son. I was convinced that any other choice would be foolishness. Looking back now, I feel betrayed. Betrayed by your misplaced overconfidence. Betrayed by your assurances. Betrayed into believing that you truly cared for our son. Betrayed by false faith.

Did you know he was going to die long before you were honest with me?  I have a feeling that this is the case. I relive the day when his Broviac line broke and he had to have surgery the next day to have it repaired. But instead, they inserted a temporary line. It was a barbaric procedure, unfit for my beloved child. He was so traumatized from this surgery and the pain that this line caused him. I remember how it poured blood and wouldn’t stop. No one seemed to care. No one seemed to care about this screaming baby, who was hitting me, crying, saying he hated everyone and everything because he was in so much pain. Do you have any idea what that is like for a mother? I had to fight to have someone examine him. We were treated as if our concerns were ‘no big deal’. When I questioned why another Broviac was not inserted, I was informed that you didn’t know if a Broviac or a Mediport would be better for him, depending on his next treatment plan. I didn’t understand this and I asked for more information. Once again, my concerns were disregarded, pushed to the side, and I was told you would decide what to do with Ronan, after his scans were returned. Did you know then that my baby was going to die and he wasn’t worth another Broviac?  Did you feel he was not worthy of such a permanent intervention? It felt like his brief life was merely temporary for you and your staff, just like his temporary line. I wonder if you know what it feels like to live in these thoughts day after day, night after night.

Do you know what it’s like to trust someone who is not trustworthy? Because I trusted you, I sat in a hospital bed with Ronan for 24 consecutive days waiting for his counts to go up so we could get the next set of scans to show us that your treatment was working. I didn’t question if it was or not because I believed in my son and I believed in you. Then, the scan day came. I left Ronan as he screamed and fought what he called his “sleepy medicine”. I held him as the anesthesiologist put him to sleep. I wiped my tears, left my son because I trusted, covered him up with his favorite blanket and went to sit in your comfortable waiting room for hours with my friend, Fernanda. We sat and waited. Hours later, we watched in horror from across the hall as my other friend, Doriet, started screaming like a wild animal. She had been told. Her trust, also, dashed. There were no more treatment options for her daughter. My heart sank for her having no idea that 20 minutes later, this scene would be reenacted with me as the main character. I had no idea.

Do you know what it’s like to be invisible? Then- I saw you sauntering out of the surgical waiting area and you walked right past me. No eye contact. Not a hint of acknowledgement. I felt sick, nauseated. I knew you saw me but you chose hurriedly passed me without so much as a nod. I know why you did this, as creating a scene in the middle of this hospital would have been the epitome of unprofessional and embarrassing. It felt like you needed time to gather your “data” and to figure out how in the world you were going to look me in the eyes and tell me that my son would soon die. Ronan woke up from the anesthesia. I had to go back to get him. We waited some more. It felt like days. I felt like we were invisible.

Tell me – what is it like to be a god?  Finally, our names were called. “Dr. K, will see you now,” she said curtly, as if we had won the prize of the day. As if, in some way, because we were granted time with you- you “will see us now”, we were special. I picked up Ronan and we headed back to your office. Your back was turned away from me, and you were jittery, avoiding eye contact.

What?” I said. “What is wrong? NO.NO.NO.NO.NO.” I repeated over and over as I couldn’t scream because Ronan was there.

The treatment didn’t work. The cancer is getting worse,” you told me and Fernanda and Ronan. But you were cool and composed and detached.

O.K…… well what’s next? Because I know you have a plan. Because you promised you would do whatever it took. So what’s it going to take next…. because I’m not giving up.”

Do you know what was happening in my mind and in my heart? Do you know that in those moments I was transported into hell? You wouldn’t look me in the eyes. You were pacing. I may have imagined some emotion as I thought I saw tears in your eyes. We sat in that room with you about 20 minutes when you left returning moments later with an assistant. I didn’t understand why she was there.  “What in the hell is she doing in here?” I wondered. “Maybe this is their way of kicking us out? Of taking some of the pressure off of Dr. K?” I wondered.  I pleaded with you to give me a sliver of hope. You wouldn’t even look me in the eyes. I gathered up Ronan, hugged you goodbye and said, “Thank you. You are a good man.”  Yet, in that moment, I wish I would have said to you, “Thank you for everything, but you are a coward. You are a coward for not being able to look me in the eyes, for not telling me you are sorry, for not telling me that you failed us”. 

I didn’t get any of that from you. I felt that we were swept under the rug as if we didn’t exist, we were failed ‘data points’ – a serious adverse event – shoved out into the streets of busy New York where I pushed my baby down the sidewalks after having just been told that I am now powerless, and that he is going to die and there is nothing left to do. And that the man who promised he would save our boy has given up the fight.

Do you realize all that I lost in that moment?  Certainly not because I’m only now understanding the many layers of losses. I have lost faith, trust, joy, family, friends, and I have lost the love of my life. Oh, there is more, but I will have to update you in the coming months and years and decades. There is, for example, kindergarten. High school graduation. His first house. His wedding day. My grandchildren. Far too many to count. Far too much for my mind and heart to hold now.

Dr. K, I am here to remind you that Ronan existed and that Ronan matters. That Ronan was a beautiful child who trusted you. You let us down, not merely with the failed cancer treatment but with the failed human treatment.

I am here to remind you that you owe more to my son than the way you treated him in the end.  Or me.

Though my world is completely shattered over losing him, the one thing that would bring me a little bit of peace would have been a simple, “I’m so very sorry” from you. A simple “I’m sorry. We failed. I failed.” Maybe even, “I’m sorry Ronan died. I promise to work harder, to try harder, to figure out this disease so kids one day, won’t have to die from this because one day, there will be a cure. I will use Ronan, as an inspiration to me.” 

Do you have one more moment to pause? Please. Look at his picture, really see him. Maybe he would inspire you to try harder, not only as a doctor or researcher but as a human being. I hope someday you will realize, that when thrown out of those hospital doors, like we were unworthy garbage, you threw out the most amazing gift that could have ever been yours.

Ronan Sean Thompson. 

If you would open your heart to him, he would inspire you to do great things, not only as a doctor, but as a man. I hope you are worthy to receive that inspiration.

Very Sincerely,

The mother of Ronan Sean Thompson,

Maya Thompson

That’s the letter. Somehow Ronan, we got back to Phoenix. I don’t remember how. I think somehow some Valium magically appeared and I think I took it. Fernanda. Our Fernanda made of all things magic, good and pure, got us home. I watched her cry on the plane as she sat across the aisle from us. I watched her but I did truly not understand her tears. I was quite simply in shocked and drugged. It was the only way I made it from NYC to Phoenix. I still had not given up. We still had Dr. Mosse in our back pocket, even though everyone had told us to stop. We didn’t. How could we have? We still had hope left. You were still fighting. Your giggles still filled the air. I knew we had to continue trying. And although we took you to Philly and there was nothing they could do… I don’t regret it. Because it was there, that Dr. Mosse looked me in the eyes and said, “I’m so sorry. We as a medical community, have failed you.” I got an “I’m sorry,” from a doctor who never really treated you, but should have. She was worthy of you. She warranted the compassion that we deserved, but did not get from Dr. K. I have no doubt that she does not think you were just another number. She knows you mattered.

This is all I can write tonight. I don’t want tomorrow to come, but it is already here. I can’t stop time but if I could, I would stop it now and not go on. I don’t want to have to go on, past tomorrow. One of the top 5 worst days of my life. Every fiber in my body, remembers tomorrow. Scan day from HELL. I’m sorry, Ro. I’m sorry, every second of every day. I love you to the moon and back. I hope you are safe. Sweet dreams, baby doll.

xoxo

If kids can fight cancer, I think I can run a full marathon, without training for it.

Ronan. Headache. Can’t sleep. Usual insomnia. Liam is still not feeling well. He has some nasty little bug that is going around his school. He stayed with your Mimi and Papa today and is staying with them tonight. He’s contagious and I feel like can sometimes use the break from Quinny. I had some things to get done today and had an appt. with Dr. R for your daddy and I, then Quinn had his time with her as well. It was really good for him. She is really good for Quinn. He really clicks with her and she makes it safe for him to talk about you. They worked on a collage about you today. It’s not finished, but they cut out a some pictures from some magazines. Quinn picked out some things that reminded him of you. So far, he has a picture of an alligator, from that time we went to Disneyland and went on the jungle cruise. He found an add for Phoenix Children’s Hospital and had that on there. He also cut out a star and the word, Cancer. FUCK. This is so not fair. This is so not right that your little brother, gets to sit in a therapist’s office, and cut out the word, Cancer, because his little brother, died from it. I know that nothing will make this right, Ronan. But I also know that your brothers need to be talking to someone other than us and I feel like Dr. R, is a really good fit. I have not taken Liam yet because I wanted to get Quinny settled first. He will go as well. I think this can only be a good thing, for the both of them. For all of us.

I hiked today. It was hot. Around 90 but I didn’t really notice. I never do. Nothing is hot enough/hard enough/hurts badly enough. I know what real pain feels like. It does not come in the form of Inferno Hiking. I found the little gift that somebody left for me at the bottom of the trail. I am assuming it was for me. It was at the bottom of my trail, very strategically placed. Sadly, I cannot accept your little gift. Or maybe sadly for you, but not for me. I am fine with saying, gee… thanks but no thanks. I have my own Roligion, to follow. See photos below:

I left you some Ronan bracelets instead. This was the nice version of what I decided to do today. The not so nice version, was not very pretty. I am actually very proud of my self-control. I am actually proud that my anger did not take over. It made me laugh instead. I needed that after coming out of MY church today, drenched in sweat. I felt better after I went to my church and talked to my Ro. I do not need a book to tell me how to do that. Why haven’t people figured that out by now? Why does the Bible/Jesus thing keep getting pushed on me? I do not like when things are shoved down my throat so just stop. I’m never going to get on board with that book of make-believe. That is what it is to ME and if that offends you, then so be it. I am not here to tell people what is real or what is not because the bottom line is, obviously I JUST DO NOT KNOW. All I know is it does not work for me. If it works for you, great! If it works for you, that makes me happy! More power to you! I have my own beliefs and this is enough for me. It is more than enough. I will get through this, with my OWN book, in my OWN church, with my OWN beliefs. I am proud of what they are and honestly, I am still learning, so I am proud of that too. They are changing and I can feel my own spirituality growing. I am o.k. with marching to my own beat. I am sorry if you are not, but that is not something I can control. It is disrespectful to push your religious beliefs on another, especially when they are grieving. An opinion is one thing. I can be respectful of opinions, but pushing is not o.k. It makes me sick to my stomach. So just stop. I will find my own fucking way. Ronan will not let me down. I know this.

Ro baby. Do you know what else happened today? I sat at Dr. R, with your daddy. I was quiet. I had my guard up as I often do in there. I cried a lot. I don’t like to listen to how much we are both hurting. It makes everything 1000 times worse. I don’t like your daddy to hear how much pain I am really in, out loud. It’s much easier for me to keep it to myself. To shut people out. To be totally vulnerable, is so brave. I’m not that brave when it comes to vulnerability. I am a good pushing everyone away. Except for a few people in my life. I have a few people that I don’t push away for some reason. A few is all I really need as of now. I think Dr. R is kind of a loss for what to do with us. Because as I told her, we don’t have normal marital problems. We have one problem and that is a dead child. And how do you fix that? You don’t. You can’t. It is the one problem, that cannot be fixed. As we were getting ready to leave there, we were walking out and she goes, “You should come and run the San Diego Marathon with me, June 3rd.” I just looked at her and said, “I haven’t been running. At all. I haven’t trained in time to run a full marathon.” She then goes, “Well, just do the half, I’m doing the full.” A huge smile fell across my face. Running a marathon, without having trained for it?? “I’m in. I’ll run the marathon with you. Not the half, the full.” She said, “Look what I have to do, to get you to smile.” I left there, smiling alright. I left there and had about 50 different thoughts run through my mind. I ran them all past Rita. I called her and said, “I’m running a full marathon, June 3rd, without training for it. Except I’d like to change the name to, Maya would like to die, so let’s see if running 26.2 miles, will kill her.” She did not like the name of the marathon. We came up with some better one’s instead. We came up with a few really good ones. Like how about, “If kids can fight cancer, I think I can run a marathon, without training for it.” Or Maya’s Marathon of Madness. I kind of really like that one. Rita and I came up with some genius ideas tonight to make this, really, really fun. And maybe raise some money in the process as well to get Dr. Mosse’s trail funded. It’s time to start saving some babes. I can totally do this. I have you to push me and I know you can get me through anything. ANYTHING. So, it’s a done deal. I registered tonight. June 3rd, I am running the full marathon in San Diego. I’m excited. Rita and I are going to hash out our plan of action this weekend. Cancer fighting ninja’s in full effect. BRING. IT. ON.

You’re daddy thinks I’m nuts. So does Rita. She called me a lunatic today. I’d agree with her. I’ll be the first to admit it. But it makes me feel spicy. My craziness, reminds me of you. And why not do this? Why not? I have nothing to lose. Not a thing. I think of you, and all that you went through. I think of you, and how you’ll never get to run a marathon. I will run this for you, because I can. Because I am alive so that simply means, I can. I am alive and I am healthy so why the fuck not?? It’s good enough reason for me, Ronan. I don’t have a reason for lame excuses. I want to run this marathon, so I’m going to. End of story. I said after the NYC marathon, that I’d never run another one due to it being so hard. Well, back then, I did not know what real pain felt like. Now I do which is why I know this marathon is not going to be a big deal. I’ve totally got this. Go big or go fucking home, right?? Right.

This is all for tonight. It’s late. I miss you. I love you. I hope you are safe. G’nite sweet boy. I miss you so much that at times, I don’t think you were real. I’m sorry for everything.

Rita… meet my friend, Mandy Bee. #awkward

 

Ronan. This is what my nights are like. Fall into a light sleep. Into a place where you are in between being awake and asleep, floating in and out of dreams/reality. But the entire time you are kind of sleeping, you have a bad feeling in the pit of your stomach. Like something is really, really wrong. Just as I get to sleep, I am jolted up out of bed. I’m drenched in sweat. Something indeed is not right. But what? Then I remember that you are not here. I get up, slam another Ambien and eventually it knocks me out. When my alarm goes off at 7 a.m. I cannot get out of bed fast enough. You’d think it was if I thought I had you to wake up to. I don’t really ever think this. I think it’s mainly just adrenaline that fills my body and makes me so restless, that waking up to do things feels better than the quietness that fills the dark nights. Do you know what I do at night? I wander around the house and turn our dryer on about 2/3 different times. I don’t care if the clothes are dry. I’ll dry them again, anyway, just to hear the noise. This is not normal. I know this, but I don’t really care.

I busied myself today with just getting normal things done like a normal mom would do. I ran to Trader Joe’s. It still takes my breath away that I am the mom in the grocery store, without the kid in tow. I went into bereaved mission mama you still have 2 kids mode and threw some things in a cart anyway. I did alright. I made it out of the store without abandoning my cart. To me, that is a success. I hiked up the mountain today with Mandy Bee in tow. We were there for a couple of hours. We had a dance party at the top. She definitely has moves like Jagger. In a Canadian radness sort of way. The weather is getting hotter which means less people on the mountain. Your daddy asked if it was an Inferno yet. I told him it was close, but not quite. It has to be over 100 to truly be an inferno day. It’s getting closer. That was yesterday, this is today, Ro. Yesterday was all things madness. I ended the exhausting day, in the ER of PCH with Mandy Bee because her babe is sick. This is how last night went down. Could be the funniest mix up/awkward first meeting of friends for the first time. I had told Rita, earlier in the day, that Liam was not feeling well. I had picked him up from school and he had a little cough. No biggie but he looked beat. I also may have told her I was in my room with the door closed, crying my eyes out. Both things were true. The part that I left out was that Liam was asleep in his bed, therefore it was o.k. that I was having a moment. The the last thing she heard from me for a few hours until she texted me to check in, was that I was not o.k. I’m throwing this next part in and calling it texts from one bereaved mom to another clearly sane but insane mom. It went a little something like this…

 

 

 

 

 

 

 

 

 

 

While I was texting with Rita back and forth, it may have dawned on me for .2 seconds that, hey, this is a little strange… she wants to come down to PCH, to sit in ER, with me, Mandy whom she’s never met, and Mandy’s son. I then thought to myself, what a good friend she is… I may have also thought for .2 seconds that this was totally out of character for Rita to do, but because of my lack of sleep/grief brain/talking to Mandy, those thoughts quickly left my mind. I said to Mandy, “Hey Rita wants to come down here. It that o.k.?” She replied with, “Of course!” Rita ran down to PCH as fast as she could and came flying through the door. I had no idea that anything was off. I was just glad that both of my friends were meeting and Zane was out like a light and resting comfortably. After introductions were made, Rita said something about the going to the vending machine to get candy. “I’ll come with you,” I told her. As soon as we got to the vending machine, Rita looked at me and said, “Um.. I have a confession to make.” “What?!? I asked her all blood-shot eyes/confused. She looked at me with a look of amusement/what the fuck is wrong with you, crazy pants?!! “I totally thought you were here, with Liam. I had no idea it was Mandy and her son here. I thought I was coming to see you and Liam!” “What do you mean?” I squealed. “I sent you a picture of Zane and everything!” She looked at me like and said, “You sent me a picture some boy with brown hair and the back of his head! Awkward! I’ve never even met Mandy, yet here I am, in an ER room with her and her little boy. Not that I wouldn’t come down here for Mandy, but maybe lunch first would have been nice!” We both started dying laughing. “I have to tell Mandy this. She will die.”

We told her. She laughed but is so the kind of person that loves me so much, that she just rolls with whatever shit I throw her way. This includes, “Hey, meet my friend, that you’ve never met before, in the ER while your son is getting breathing treatments. It’s a party now!” It ended up being fine. And provided me with the laughter that I so needed for the day. Yesterday was a really hard day for some reason. I told Rita that I was so sorry. Mandy too for the totally awkward but not awkward mix up because both of them are so accepting of me and my crazy head. I came home hoping to drift to sleep. That did not happen. I sobbed in bed instead. Your daddy just told me he was sorry and how he’ll never understand this. He fell asleep. I did not. I wrestled with sleep for a couple of hours and woke up, ready for another day without you. Liam did not look well this morning. Quinn was so snuggly in his bed, that I did not want to wake him. I let them both sleep. I kept them both home. I was supposed to hike today with a group that all met up and hiked for you. It was put on by a girl named Rachel whom I met at your fashion show. She organized a whole hike for you and ended up raising 400 dollars in a really short amount of time. Can you believe that?! She had balloons, signs, a cute little table set up with your pictures everywhere. She hiked it barefoot, in a purple tutu and everything. I am amazed at all the good people in the world, Ro. Every time I hear of people like this, it is a little reminder to me, to continue on. Thanks to all the lovies who went out today. It meant a lot to me. I thought about you all, all day long.

I’ve had a really rough past 2 days, which I don’t want to say too much about, until I am 100% sure, but it turns out, people are not always who they say they are. In my naïve head, I want to believe that everyone is good and would not take advantage of others, but I am learning a very hard lesson that this is just not true. There are bad people out there. I often forget this but due to this lesson, I am learning that I need to have my guard up a little more often. I just cannot believe there are people out there who would take cancer and use it to their advantage. There are and it’s due to this that I’m going to have to start being a little more protective of our situation. Tonight, I do not have the energy to sit and fly off the handle about this. Maybe one day, but not tonight. I’m too mentally beat to have another thing to be upset about.

I hiked in the dark tonight. I ran down to PCH to check in on Mandy Bee. I was not prepared for how hard things were going to hit me tonight, until I left there. I am usually fine there. Not tonight. I left there, tears steaming down my face. I heard your voice. “I love you, Mama.” “You’re my best friend.” “Come on baby doll!” I had visions of chasing you down the hallway that we used to walk through. I could not get out of there, fast enough tonight. But you know what, Ro? Mandy Bee would walk through fire for me and I would do the same for her. In a heart beat.

I booked some flights today. It was a fuckwad of a mental block. I sat at our kitchen table for 2 hours, and with the help of Mandy Bee and Rita, I picked dates and booked 4 fucking airline tickets. Not 5, but 4. It was horrific. Your daddy said, “Can’t you wait until I get home, to do this?” I responded with an, “No, I cannot. I’ve tried to do this for weeks now. I have to get it done today or else I am going to slit my wrist. I have to just book these, and at least get our airline tickets taken care of. Airline tickets are done. That’s all I could do today in regards to May. It was enough today. It was almost too much but I cannot bear the thought of scrambling so last minute. A plan is good for all of us.

This is all for tonight. I miss you. I love you. I hope you are safe. G’nite baby doll. G’nite little lovies. Thank you to all my badass hikers today. I loved hearing about how so many of you got so dirty and how much you thought of Ro, the entire time. Thank you, so much. Thank you, Rachel. For working so hard and throwing together, such an amazing event. And FUCK CANCER.

xoxo

 

 

 

Your song for the night, Ro. And Mandy Bee. Love you both.

 

 

http://www.youtube.com/watch?v=DYd57rkvnpQ&ob=av3n

A tutu, mustache wearing, dance party, hike with a little badass Bee

Ronan. I cooked the eggies this morning. And the sausage. And bacon. Fruit. I had croissants that Rita gave me last night, but I forgot to take them out of your daddy’s car. They were the kind that are frozen and you leave them out over night, to rise. Your daddy called me this afternoon. “Did Rita give you croissants or something last night?” “Yeah! I can’t find them!” I said. “They are in the back of my car. They are rising as we speak. I’ll run them home for you.”

I chuckled. Grief brain. What an asshole it is. I cooked them anyway for your brothers. They were an awesome afternoon snack for them. I felt like a good mom for not burning them. I played baseball with your brothers, too. I tried really hard to be a good mom today. I’m exhausted from it all. It was a long day of missing you.

I ran around and got some things done this morning. I met up with Mandy Bee. She has been gone a lot so I have not seen much of her. I miss her and the ability she has to make me forget about all this pain for a bit. Even if it’s only for a few hours. I told her I had to get my hike in for the day. She offered to come, even though she had already done some crazy work out early in the morning. I told her I would love for her to come with me. We both decided that we needed to hike in our tutu’s today. We ran to her house and got hers and then met back up at our house. We drove to the mountain and went on probably one of the best hikes I’ve had since you’ve been gone. We bolted up the mountain for 90 minutes of pure craziness. We went on a different trail with music from her iPhone blaring, and we full on had a dance party the whole way to the top. I laughed. I wore my mustache sunglasses. I didn’t cry hiking that mountain today with Mandy Bee. I got lost in the world that she creates for me which is either really, really sad when I need it to be. Or else it is really, really happy. In the craziest way possible. We looked like we were nuts today. It felt good to look nuts and not in the way that I normally look hiking that mountain with red eyes and black mascara running down my face. The break from that was much needed, especially after last nights heavy-hearted hike. I know I desperately need more days like today where I am able to laugh and let go. They don’t come very often but when they do…. watch out. They make me feel like I am on top of the world with you right by my side, holding my hand. My best days always remind me of you.

I did not decide on our trip today. I am procrastinating in a big way.  I deserved today. I just could not deal with the pressure of making any big decisions about fucking May. Maybe tomorrow.

Short post tonight, baby doll. The little sleep I had last night is hitting me. I miss you. I love you. I hope you are safe. G’nite. Sweet dreams

xoxo

A song for you tonight, Ro. But dedicated to Rita. Because cancer is an asshole. But she is not.

 

 

http://www.youtube.com/watch?v=tg00YEETFzg&ob=av3e

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