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

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31 Comments

  1. Mel

     /  April 23, 2012

    Maya

    Tears. I’m so sorry.

    Please know that a mama on the other side of the world in Australia thinks you are amazing.

    Xxxxx

    Reply
  2. dolfinlvr98

     /  April 23, 2012

    Tears….just tears! I’m so sorry that he failed Ronan, he failed you! You deserve so much more than what you were given! I’m sorry you have to go on without Ronan and there are no words to ease your pain! Just know you are loved…..so very sorry!!!

    Reply
  3. Maya, I don’t know how you go on living every day. I don’t have children, and I don’t know if I ever will, so I can’t even begin to comprehend what hell you live in every day…but through your words I feel your pain and it takes my breath away every time. I know you don’t think you’re brave but you really, really are. Kushner failed you and Ro knows how many other families. That letter was so beautiful and so sad…I don’t know how anyone could ignore your words and your pain. I’m so, so, so sorry. If I could have one wish in all the world it would be for you to have your Ronan back…for all bereaved parents to have their children back because it’s just not fair and it’s so wrong.

    Reply
  4. Jennifer Benedict

     /  April 23, 2012

    I am so Fuckong sorry!!! You ate right, that doctor was a coward and I hope to God someday he is made to recognize his cruelty! The tears are rolling , I don’t know how you get through these letters, your strenghth inspires me, and your pain breaks my heart! I’m so sorry they failed you both!!

    Reply
  5. Jaime H.

     /  April 23, 2012

    Wow, I’m sorry too Maya. so sorry things didn’t have a different outcome. So sorry for all of the pain. i’m thinking of you and praying for you today. xoxo.

    Reply
  6. I am so so sorry, Maya. Nothing but tears and regret for you today, regret that there was no one to step up and be Ronan’s hero, be the one that saved him. Ronan deserved much more…so much more. Lots of love to you..
    Sharon

    Reply
  7. Susan Sprague Lee

     /  April 23, 2012

    Through you, Ronan has forever changed my life…as a woman, as an advocate, but most profoundly and permanently as a mother. Your letter was the most powerful expressions of love and loss that i have ever read. You continue to inspire and amaze me everyday. Pleaae keep fighting this fight…the world need you Maya.

    Reply
  8. Katie

     /  April 23, 2012

    I don’t know how to help! I feel inspired to do SOMETHING! But what? There can’t possibly be anything in this world worse than losing a child & then to have to watch a poor INNOCENT child suffer is NOT ok! Not at all acceptable! Please Maya, what can I do to help!?!? I have no resources! All I have is care & desire to HELP!

    Reply
  9. Wondering if you got a generic condolance note from the NB nursing team at MSKCC. I got one that over and over referred to Nathan as “your child” and not once by name. I was so upset, I contacted the social worker and told her how upset I was and how a generic note was so much worse than no note at all. I wonder if they are still doing that.

    Wouldn’t other people be horrified if they truly understood they we literally had to GAMBLE our child’s life? That is what it is in the NB treatment world. We stood at a crossroads and had to pick which treatment to do. There was one stem cell rescue left and lots of options: MIBG (I wish we had done) some odd things down at St. Judes, Dr. Sholler’s nifurtimax, which was just starting. Instead we picked the “CURE ” (yes was told by Dr. M it could cure him) the one the had been waiting for at the time, hot antibodies and were the first patient enrolled on it. Needless to say it didn’t work. We put our chips down on the wrong number.

    That’s how it goes – you, the parent, have to make the gamble with your child’s life and the stakes are the highest in the world. It is truly terrible. People have no idea.

    I have to think, though, that the only way these doctors can keep doing their job is to detach at some point. I mean, their hearts would break over and over and over again and how could they keep doing their science? They would break down at some point. This is just what I have decided for myself, to come to terms with it all – not saying that your feelings are at all invalid – please don’t think that.

    Reply
  10. melissa v.

     /  April 23, 2012

    I am filled with sorrow…for Ro & Esther and all of the sweet beautiful amazing children that have lost and are in the process of losing their invaluable lives to this horrid beast. And to all of their families, the pain…I can not even begin to imagine, but I promise to try each and every day so that I will better appreciate the miracles and beauty that are present in my life every second of every day. I am so sorry, Maya…so so so very sorry. No parent should ever have to pick which one of these God awful treatments might keep her baby alive the longest…medicine MUST fix this, they simply must find a cure, a real one. Your precious beautiful soul will be tortured forever, your baby is gone from this earth….sorry just doesn’t even come close. Sending you so much love and a promise that Ronan matters to me and I will do my very best to make a difference in his name.

    Reply
  11. Laura

     /  April 23, 2012

    Our love to you and your entire family. You have been thru way more than anyone should ever have to endure. Know that we care and love you all.

    Reply
  12. Incredible, perfect in every way letter to Dr. Asshole. And no response? Really? God, I feel your pain Maya and I’m so very sorry.

    Reply
  13. Glenda

     /  April 23, 2012

    RoMama,

    My heart aches. For you, for Woody, Liam and Quinn but especially for Ro! Always RO! xo
    FU Dr. Kushner! FUCancer!!!!
    Big hugs to you!
    xo

    Reply
  14. Jennifer Todd

     /  April 23, 2012

    What a fucking coward…

    Reply
  15. Kristina

     /  April 23, 2012

    I wish I could hold Ronan in my arms and never let go. Just hold and never let go…

    Reply
  16. Kelly

     /  April 23, 2012

    Tears….I’m so very sorry…you should still be with Ronan…He did not deserve any of this…I’m with you on the whole “God” thing…Ronan belongs in your arms and nowhere else…You have changed my life I no longer take my kids for granted…I try to cherish every moment I can with them….once again I’m so so sorry.

    Reply
  17. kim van alen

     /  April 23, 2012

    Maya,
    I remember waiting, and waiting to get an email notification last year with your post about scan results, and when it finally came through, I was of course, weeping. Reading your letter to that FUCK STICK Dr. Kushner, just proves what an incredible person you are, not that we all don’t already know that. That letter could not have been written more perfectly. How can that man look himself in the mirror, knowing what a coward he is? I am sorry, and have been and think of your entire family daily. I love you and Ro and am trying to spread the RoLove in Central Cali. Keep truckin’ mama. You are doing such big things and beautiful Ro is SO proud of you, I know it.

    Kim Van Alen

    Reply
  18. Christine

     /  April 23, 2012

    That letter was total perfection. I don’t know how you found the strength to write it as I am wiped out just after reading it. I will be thinking of you tomorrow.

    Reply
  19. Colleen Fisher

     /  April 23, 2012

    <3 and hugs. I'm reading this after I spent Saturday afternoon in NYC with Perry Zimmerman, an 11-year-old fighting cancer for the THIRD time. I was wearing these socks that said, "Cancer Sucks" and she looked at my socks and said, "I love your socks! And, yeah, cancer. It really sucks." I'm reading this on a day where I learned a friend's six-week-old grandson has a mass in his throat and spots on his lymph nodes. Fifty percent chance it's the Big C. They find out tomorrow. RoMaya – we won't stop loving and supporting you until we win this fight. The fight is not over until there is a cure for cancer. NO CHILD SHOULD HAVE TO GO THROUGH THIS. Keep telling us how we can help, keep telling us what we can do. KEEP TELLING YOUR STORY so we can tell others. Heart goes out to you always, but especially today. Giant hugs from DC.

    Reply
  20. Mike Marmis

     /  April 23, 2012

    Incredible picture. Incredible boy.

    Reply
  21. Suzanne

     /  April 23, 2012

    I am so sorry Maya. Dr. Kushner doesn’t have a heart.

    Reply
  22. Lyn

     /  April 24, 2012

    I know that talking about my mom is probably not what everyone wants to hear because she was not a child but nonetheless we went through some similar things, Maya. I know that it’s not the same and I could never imagine your pain but reading your blog makes me realize how fucked up doctors can be. We experienced the same bullshit with my mom’s doctors. What fucking cowards they were, after she was told there was nothing left they could do they treated her like shit. I finally spoke up but the damage was done. I will never forget how I felt they didn’t care. They let us all down.

    I wanted to confront him and I finally did about 3 months after she passed away. I felt better but still didn’t get the answers I needed. Now I’m trying to get up my strength to confront hospice and I am hoping one day I will tell those assholes off too. You have given me courage and hope. Know that you have touched my life.

    Reply
  23. I am so very sorry – I cannot think of anything else adequate to write – except for of course FUCK YOU CANCER!!!!

    Reply
  24. Lisa

     /  April 24, 2012

    Maya,
    I’ve been following your blog for a long time and have never commented. I feel so sad for you and think about you every day. I know that it’s not possible to ever say anything that could remotely make you feel better. I also don’t typically cuss, but I am never offended by your spicy mouth.

    This letter to Dr. K warrants a comment. How the FUCK could he not respond to this letter? It is eloquently written and much kinder than he deserved. Even if he only sent you a short note that simply said “I’m truly sorry”. It is really, truly unbelievable. I agree with Suzanne’s comment above – he is heartless.

    Reply
  25. Mom too

     /  April 24, 2012

    That was a very honest, tactful letter. I have met Drs like that. No soul, no compassion. What goes around comes around, he will experience the same unfeeling in his life.
    I am so very sorry that Ronan is gone. I am so very sorry that he can’t be brought back. I am proud of you and your family…..one foot in front of the other, one step at a time. You are making progress. YOU will help children everywhere.

    Reply
  26. Katie

     /  April 24, 2012

    Maya, there are no words… just tears… I am truly sorry… Ronan mattered and matters so so much… he deserved compassion from that man, you deserved compassion, sentiment, fucking something… my life is forever changed because of your little blue eyed boy and who even gives a shit because it shouldn’t be… he shouldn’t have changed my life… he should be coloring on your walls and squeezing toothpaste in the car!!! I miss him. I don’t know him apart from your blog but he’s worth the world to me. There will always be sadness in my heart for you and for your boy that I yearn to be here with you, with his family, on a daily basis. Obviously my feelings don’t even register on any level compared to the pain that pours like a thunder storm from your heart… but please know he matters so much and there’s a world out there who ache for him, who are sorry, who are sorry this doctor failed you and didn’t have a fucking thing to say about it. I’m sorry this day exists. I’m sorry Ronan was playing quietly in the back round so undeserving of those scan results. I’m so insanely sorry.

    Reply
  27. KT

     /  April 25, 2012

    Mama, read your post in the pickup line. My
    heart hurt for you for the rest of the night. I sat in my car and just cried for you. It’s just not
    fair!!!! I’m so so sorry!!!! Love to you and your
    4 boys.
    xoxo

    Reply
  28. paula

     /  April 25, 2012

    Wow..can’t believe the way he handled telling you. It was not right. And to not respond..is cowardly for sure. I was talking to my husband about this. He did say that although you and Ronan…were absolutely handled the wrong way. He said that these doctors have children dying often. Who can handle that….they must have to detatch from it somewhat in order to survive in what they do for a living. Most of us would want to quit after knowing the first child to die. Its a defense mechanism a coping skill. I am sure he can not forget your son. I don’t know you or your son and I see his beautiful face every day. You have touched my life in so many ways. My ddaughter is a neuroblastoma survivor…diagnosed at 11 months…and I do count my blessings every daycocount my blessings every day. I’m very sorry for the way that doctor treated you. I

    Reply
  29. Paula

     /  April 25, 2012

    I submitted a response thati wasnt finished typing, was on phone sorry. anyways to finish you were treated wrong, FOR SURE….but my gut tells me he did care, he doesnt forget your son. No one could forget that beautiful boy. He just is lousy at dealing with the outcomes that arent favorable. So he becomes detached. BUt still some response from him is what you deserve. Some people dont get it. Obviously hes never lost a child. Sometimes those are the only people who truely get it. Want me to give you an exapmle of how sometimes the medical community just sucks My daughter Emily had stage 2bNB, a softball sized tumor in between her lungs and ribs. Removed, etc. etc. She proceeded to have 9 CAT SCANS, in less then 2 years as a way of checking for reoccurence. After a few of them my husband became concerned about the amount of radiation she was being exposed to. When questioning the doctors at Dana Farber- Boston, about why werent they doing MRI’s instead-their response was, MRI’s are longer and require her to be under general anesthesia. The risks outweigh the benefits, etc. So we had to trust that they are the top people in the world. The must know what they are doing. Well this was back in 2003. We know now and they will never admit this. But Cat Scans are cheaper. Bottom line. Who cares about all the radiation your pumping in to my baby. Now we read, right in the Dana Farber…magazines that follow up scans are done with MRI’s now. WHY, because people got smart and started questioning their choices. My husband is so mad he did not say, NO do the MRI’s. Heinsight is 20/20. But C’mon, they knew it was all about money back then and instead fed us a line of BS. SO sometimes it is about money. Doctors are forced to do things sometimes. I think they all care. But in a way, you have to be a certain type of person, who can have a career that you see many children die, for a living. I believe Maya- they all care. Some are just assholes too, who just dont have the people skills for all aspects of what they do, Neuroblastoma is so hard to treat. You did nothing wrong in any aspect of his care. You did deserve much better treatment from Kushner though. He shouldnt have given you so much false hope. He should have told you he would do his best but not make big promises. Especially with what we know about how difficult it is to survive NB, especially when diagnosed in a Stage 4. Someday there will be a breakthrough, a cure, an easier way to pick it up earlier. And you will be a reason it comes true. Your efforts. But you deserve to live, to enjoy food, enjoy yoga again someday. You did not make your baby die. Neuroblastoma did, Your little Ro man wants his mommy to smile more and know its ok too. You will never get over this. But Ronan wants his mom to find happiness, continue to fight for other littles, and continue to be the most amazing mom and person I know. You are inspiring, honest and such a good human being. I think of your son, daily. As I check my email daily to see if you have posted. I get something from you each day you write. Thank you, You have a beautiful family.

    Reply
  30. Dena

     /  April 25, 2012

    Maya…I am so very angry! I live in Long Island close to NYC and Sloan is the place that people run to when they hear the word “CANCER”…I had an Uncle who was treated there many years ago…Like you he was fed a shitload of “hope” they cut part of his tongue out and his bottom jaw and chin…just hacked off…he wore a bandana for the rest of his miserable time here on earth! The doctors there at Sloan used him as a lab rat! he was an experiment and when that experiment failed …they too kicked his ass to the curb…he was left to die a miserable death and told there was nothing they could do and dont come to the hospital….WHY??? WHY YOU ASK??? Because had Uncle Lou gone to that place to die he would then become a statistic of death…you know the numbers that were given to Woody…they are BS…CANCER Is EVIL…Cancer very rarely loses…Years later after my Uncle died my Father was sick with Cancer…he died a horrible suffering death that is embedded in my heart and mind…the only difference is his oncologist sat with us and cried…he felt terrible…he said he did what he could…we were mad!! Very mad…so angry but now looking back I have to say that he somewhat cared…My Dad wouldn’t put his toes in SLoans door and for that I am happy!

    For you Maya….I wish you peace and some kind of comfort…I hope May comes flying by…(its the same month my Dad died so I hate May too!) After it passes you will realize that May like every other day will suck without Ronan…But you will get through it beacuse you have no other choice! Keep on CURSING CANCER…it is a FUCKING PIECE OF SHIT!

    Reply
  31. Maya this post broke my heart. I’m so sad for you and want to hug you and take away your pain. I can’t image your pain. I don’t know what to say honey. I saw you on the Katie Courec show the other day. You wore sparkly shoes. I loved them. You are beautiful and doing awesome things. Ronan was beautiful Maya. I can’t wait for the day you two are united again. Love, Melissa

    Reply

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