Day: April 23, 2012

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