That time I went Inferno hiking and almost didn’t make it down the mountain, because sometimes I’m an idiot who does stupid things.

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Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.

Hiking Camelback on a normal temperature day is not an easy feat.  Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell.  I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on.  I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly.  Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me.  I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb.  I had to stop quite a few times which I normally don’t do.  After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top.  I’ve never not made it to the top, so this was a first and I was not happy about it.  But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff.  I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me.  You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place.  I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly.  I started to get really disoriented and dizzy from the heat.  I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out.  I got to the part where you have to hold onto some rails to climb back down.  I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore.  I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell.  Did I want to die?  I was so out of it at that point that I couldn’t really answer my own question.  I let my mind drift and wander to those morbid places for a couple different reasons.  One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places.  I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much.  I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.

I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom.  He offered to come and get me and of course I said no.  Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on.  I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor.  I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes.  For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity.  Do you think I learned my lesson and will never do that again? You know me better than that, Ronan.  You know I’ll be back up that mountain in no time to do it all over again.  I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.

A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain.  I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail.  I googled the story and found it almost immediately.  He was 23, from Washington State and his dad was pleading for his son’s life.  I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts.  Could that have been him?  In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain.  My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief.  My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found.  It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days.  On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid.  It had been 3 days and I knew if he was up there and found, that it was not going to be good.  Still, I asked whoever is in fucking control of this life, for a miracle.  Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress.  My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about.  Please let him be alive.  Please, please, please.  I came home and checked the internet for the news.  A few hours later the updated story was posted.  A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday.  The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock.  The numbness.  The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too.  It’s been over a week and I can’t stop thinking of this kid and what happened.  I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.

I talked to some of the regular hikers after it happened.  Eric’s body was found about 500 feet below the summit.  They showed me where he was found as I wiped the tears away from my face.  The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented.  The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be.  And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die.  Sometimes I just want a break from all of this pain though.  I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.

Your brothers turned 11 yesterday, Ronan.  I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do.  I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you.  They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means.  You were missed yesterday so very much.

I’m going to run now.  It’s 4 in the morning here and I’m back to keeping the hours of a vampire.  Up most of the night and functioning on just a few hours of sleep.  It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left.  Dr. Sholler is actually going to be at our house in about an hour.  She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot.  No way I would ever take that precious cargo to the inferno.  She has too many kiddos to save.

I miss you.  I love you. I hope you are safe.

Bye, little man.

xoxo

I made a new friend and I know you are going to look after her.

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Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally.  You always bring me the rain when I am the saddest. I was up on and off through the night.  Waiting for that 3:25 a.m. time when you left this world.  I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me.  No screaming and crying fits allowed when a peaceful baby is sleeping beside you.  I sent an email to Sparkly instead and screamed and cried to him.  FUC.  I hate cancer.

Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it.  We talked a lot about life, loss, this cancer world and how wrong it is.  I like spending time with her as not only a doctor, but on a personal level as well.  I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you.  One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere.  It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.

Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.

Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.

http://www.esbnyc.com/documents/ESB_LP_Questionnaire_FINAL.pdf

Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.

It’s still pouring down here.  After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons.  Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself.  Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.

It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.

Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.

After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?

Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.

I miss you. I love you. I hope you are safe.

xoxo

 

Nela, you give me hope.
Nela, you give me hope.

A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

New friends and extra lipgloss

Ronan. Now matter how low I get or how bad things sound, the bottom line is I will always put on lip gloss to go meet another cancer mom and her babe. That is what happened today. I got up out of bed. I spent the morning cleaning and doing laundry, getting things spotless for my sanity and Macy’s arrival. I showered. I dressed. I had planned to take your brothers to a movie during the afternoon. I checked my FB which I don’t really do, that often. I saw I had a bunch of messages on it. I only clicked on one. It was from another NB mom that lives in California. She reached out to me a few months ago, saying they were in Sedona and wanted to know if I would drive up to meet them. I told her of course, but our plans fell through due to her older boy getting sick. I hadn’t heard from her since, until today. Her message said she knew this was last-minute, but she was in San Diego for her little guys treatment and was wondering if I would like to meet up for a bit. I hesitated for a second, but then messaged her back and said of course. I went in and asked your brothers if we could skip the movie to meet up with this little boy and his mom. They both said, o.k. They are such great boys. They both asked a lot of questions. Who was this boy? How old was he? Did he have the same kind of cancer, as Ro? Does he have any brothers or sisters? Where does he live? I didn’t know much, but I answered them the best that I could. We piled in the car and drove off to meet our new friends at the train museum.

Ronan. Today was the best day that I have had in a long time. It’s during times like this, that I know you are still around. You could not have picked a more perfect day, for me to do the things I did today. Just when I am feeling in such a slump and so freaking sorry for myself, you give me a gift like today. A day where I got to hang out with the sweetest little 3 and a half-year old who reminded me so much of you. Where I got to look into his mama’s eyes and it was an almost unspoken conversation. I saw eyes that reminded me why I have to continue to do, what it is that I am here to do. I needed a good reminder and today I got all that and more. This mama looked at me a few times and asked if I was alright. If it was hard for me to be there, with her little boy. I just smiled and told her, “No.” I do really well in the cancer kid world, Ronan. I do much better in it, than the normal world that is so foreign to me now. This world fills me with a peace and comfort that I cannot explain. I spent the day with your brothers, Teddy, and his most beautiful mama. We looked at trains. We chased balls. We held hands. We laughed. We giggled. I felt alright. I felt alive and brave and I got all of this from a little boy who has the weight of the world on his shoulders, but you would never know it by the look on his face or the laugher that filled the air. I listened to him say things like, “Come on my friends!” as he reached for your brothers hands. I got to hold his little hand while we were crossing the street. I miss little hands, so very much. I talked to his mom a bit about what they have gone through. I listened to her words and the way they have had to fight for everything as far as Teddy and his treatment. The way she is the one, presenting studies to the doctors, demanding scans when they don’t want to do them, and answers when nobody wants to give them. I know I can fix this world and make it better for these families. I am more motivated than ever, to get this done. I have the vision. I have the dream. I will make this a reality. I will make this world less scary for these families. Today was a reminder that I cannot give up. That I need to stop feeling so sorry for myself because there are people out there who are here, fighting and who deserve better than what it is that they are getting. I know without a doubt, what it is that I am here to do and why. It’s what you would want. It’s what we should have had. It’s the reason why I can’t stay in bed and not wear lipgloss anymore. I’m not giving up on this world, these kids, or these families. I may take a few days here or there, to slump down into a really dark place, but I promise I will always come back to fight again. Thank you for the reminder today. Thank you, to Teddy and his mom for stealing my heart and giving me back that hope word just by looking in their eyes. That’s what I saw when I looked into their eyes today, Ronan. Eyes filled with such hope that I have decided I cannot ignore this word any longer. I think I can start to let this word back into my life again. Today, I felt hopeful, calm, and brave. Today, I felt you everywhere. It was a good day.

Macy is here. Quinn and Liam are happy. We all snuggled on the couch and watched a movie. Quinn is sleeping in-between your Macy and I. He fell asleep with the biggest smile on his face. I know why. It’s because he saw his old mom today. The one that can smile, laugh, and be playful. The one that can be brave and who can sit back and watch your brothers and who knows how they are going to go off and do amazing things in this world; all because of you. I can be alright in this life, Ronan because of days like today. Thanks for never giving up on me, no matter how crazy I may get over this never-ending pain. Thank you for giving me a good day, when I needed it most. I love you. I love you and miss you so very much. I hope you are safe. G’nite, little one. G’nite to our new friends, too. Thank you for being brave enough to reach out to me and for being able to see the light, through all of the darkness. The little rays of light, are the two of you.

xoxo

I miss him

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!

Fuels in the fire. Burn baby, burn.

I’m writing today to you all because I have a lot of fuels in the fire. I know I am supposed to be enjoying my family beach time, but being busy is helpful to me as well. First of all, last night I had the chance to go and look at all of the pictures that the amazingly talented, Emily Carroll, took at Ronan’s Fundraiser, and posted to her Facebook page. The link is on my Facebook page as well. I cannot tell you what an out of body experience it was for me to see all of your beautiful faces, most of whom I didn’t know, supporting us. I cried the entire time I looked through them. It is was beyond hard for me, to know that all of you were there because of the love you have for our family and because our little boy is dead. Can you put yourself in my shoes for one minute? Just take one minute, close your eyes, and think of your child dying. In that one minute, allow yourself to experience the pain I feel, my family feels, every second of the day. Take this one minute of pain and know this is why you all have taken it upon yourselves to inject yourself into our lives, when most of you don’t even know us. Take a minute to think about what amazing human beings that makes you and be proud of who you are. You all know there is more to life then the superficial things that surround us. You all get the bigger picture and you all know you are about to help me change this world and the way most people live with their eyes closed and lack of passion. You all have made me beyond proud and honored to have your love and support.
Ronan lived everyday of his life as if it was his last, without ever knowing that he would only get to be on this earth for almost 4 short years. Maybe deep down, in his old little soul, he did know this, which is why he made everyday a party and gave us so much happiness. He lived his life to the fullest, the way everyone should. I can guarantee you, if Ronan would have grown into an adult, the way he should have, he would have changed the world in some way shape or form. He would have had such a huge impact, as it was what he was put on this earth to do. Look at how much he has done with his life in the short amount of time that he did get to be here. His life was taken away from him, but I still believe he was meant to change it. I will never stop believing in the power of my son and his big blue eyes. The connection that Ronan and I have was so beyond deep, that it is beyond this life. I know it is him who is pushing me to keep going with his mission, his life, and his soul. I know what he wants me of me and every idea that I have, I am going to fight for it. Every goal I want to reach, I am going to fight for it. Every breath that I have to take, when I don’t want to anymore, I will fight for it. He is surrounding me still and I cannot rest until things in this world start to change. Ronan wants to be the voice for childhood cancer, so someday, children will not have to suffer and lose their lives the way he did. Ronan wants all parents to know that you should never take a day for granted with your kids and that the little stuff, really does not matter. He wants to help make parents, better parents. He wants all children to be loved as much as he was, because he knows how precious life is and he would give anything to be back here with us, where he was loved every second of his life. I gave my whole heart, body, mind and soul, to Ronan from the time he was born. I think deep down, I knew that I wasn’t going to get to have him forever which is why our connection was so deep and so different. I gave him a lifetime of love in his almost 4 short years that he was here. I will forever be heartbroken and feel like we were robbed of the most amazing child, but that his fight has to continue on.
Back to my fuels in the fire. I have a lot of things to take care of in regards to Ronan’s Foundation when we get back to Arizona. I am going to pour my heart and soul into it. Some things that I want to see happen are the following:
I want to make The Brightest Star in the Sky a yearly event. I want to make it huge. The amazing women who put it on for us this year are completely invested in our cause and for that, I cannot say thank you enough. I cannot wait to be involved with you all and to work with you to make it spectacular. I cannot wait to watch how it evolves and grows into something that everyone knows about and I have all of you beautiful woman to thank for getting this started. This would have not happened without you and for that I will forever be grateful.
I want to find a big voice for Childhood Cancer. People worship the power of celebrities so much, and as much power as they have, why hasn’t anyone stepped up to the plate to start a movement for Childhood Cancer? I know a lot of celebrities support St. Judes, which is amazing, by why not just Childhood Cancer in general??
Also, Yoplait. They change all of their lid colors to pink in October, which is also amazing, so why not Yellow for the month of September for Childhood Cancer Awareness?? I don’t have their contact info yet, so if anyone knows of it, please email me at mayawoody@gmail.com
I think the more people they hear from, the more they would be willing to listen. A movement has to start and it has to start now. The sooner the better as we all know when  you are dealing with Childhood Cancer, time is not on your side.
Lastly, I wanted to tell you that last night I did dream of Ronan. I could cry just telling you about it. I was pushing him on a raft, he had hair, and he was laughing and happy. In my dream, he was alive, but I was also talking to people about his death. My childhood friends, Missy and Mandy were in it and we were on Missy’s farm with Ronan running around. My friend, Lisa, was in it and I was hugging her about Ronan dying. It was a dream where life and death both existed, but they were both beautiful. I am so thankful for my dream last night and I didn’t take my Ambien to go to sleep. I didn’t fall asleep until about 3 a.m. but at least I got to see my sweet baby boy. It was the best thing to happen to me in a long time.
That is all for today my friends. I have been getting a lot of emails also about getting bracelets to out of state peeps. Once I figure this out, I promise I will let you know. Just give me a few days:) Thanks for your support and love, always. Have a good day, my friends. Love you all.
xoxo

I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

Dr. Sholler was the only one in the end to tell us yes. We just ran out of time.

Penelope passed away but she is still inspiring millions. Her parents are doing amazing things for children’s cancer. Check out their website at:

www.solvingkidscancer.org

By GEETA ANAND

NEW YORK — John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at New York University Medical Center here, sucking her thumb and clutching her favorite teddy bear.

For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn’t blocking the way.

[Photo]Penelope London

Neotropix Inc. of Malvern, Pa., says it would like to help, but the drug may not be safe for a child and dispensing it would be bad business. “For us to provide the drug to this child would be to put at significant risk a small company with limited financial resources,” says P. Sherrill Neff, managing partner of Quaker BioVentures, a major investor in the firm, which is trying to tie up a vital round of financing of about $20 million. “You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient,” he says.

The deadlock reflects an increasing tension between individual patients and companies using the revolution in understanding biology to develop new medicines. Ideas for treating deadly diseases are proliferating, and the Internet carries hints of promising results into the homes of dying patients. They are pushing for the chance to bypass the laborious approval process and receive quick access to experimental drugs when all else has failed.

In the U.S. Court of Appeals in Washington last month, a lawyer for a patient-advocacy group argued that patients’ constitutional rights are violated when they are deprived of medicines in testing that could save their lives. The Abigail Alliance for Better Access to Developmental Drugs wants the FDA to allow patients to buy drugs in testing directly from companies and to allow the companies to profit from the sale. A three-judge appellate panel last year ruled in favor of the alliance. The FDA appealed the case to the full appellate court, which is scheduled to rule later this year.

Lawyers for the FDA argued that broad access to experimental drugs could harm patients and undermine the incentive for them to participate in clinical trials, the studies companies are required to perform in humans to prove safety and efficacy.

“This is a huge dilemma we face as a society — it’s moral and it’s ethical,” says Patty Delaney, director of the FDA’s cancer liaison program. “We have the incredible pain of an individual — sometimes it’s a 4-year-old child, which pulls at everyone’s morality — versus the societal issue of what happens if a small biotech company diverts its resources to a child or ill mother?”

Mr. London, 40 years old, was raised in Manhattan and spent seven years at Highbridge Capital Management, one of the largest hedge funds in the world. He co-founded SuttonBrook Capital in 2002 with $30 million in capital and built it into a $2 billion hedge fund. On a blind date in 2001, he met his wife, Catherine, a free-lance writer and editor. They married the next year, and she gave birth to Penelope, their first child, on July 6, 2002.

Growth in the Ribs

Penelope was 16 months old when she was diagnosed with neuroblastoma, a rare cancer that develops from nerve tissue and often appears first in the adrenal glands. By the time her parents noticed a growth under her ribs and took her to Mount Sinai Hospital, the disease already had spread to her lymph nodes, liver and bones.

Four days later, Ms. London delivered the couple’s second child, a boy named Oliver.

[Penelope]John London with his daughter Penelope outside their apartment in Manhattan last year.

Doctors told the Londons that Penelope had a particularly aggressive form of neuroblastoma and stood just a 25% chance of being cured. Over the next year, she underwent high-dose chemotherapy, radiation, a bone-marrow transplant and surgery.

A few weeks after the treatment ended, the family went on vacation to the Atlantis Paradise Resort, a hotel with a marine park in the Bahamas. They had just gotten off the plane when they noticed a lump on Penelope’s neck. They tried to ignore it and enjoy the vacation, taking turns holding her in the underwater tanks for hours to indulge her fascination with the giant stingrays.

Soon after they returned to Manhattan, they discovered the cancer was back. Radiation shrank the tumors in Penelope’s neck and skull, but the cancer broke through again after several months, in what would become a pattern. Each time Penelope’s cancer progressed, the Londons tried a new treatment — moving toward therapies earlier and earlier in human testing. Some treatments put her cancer into remission, others kept it in check for weeks, and some didn’t work at all.

Mr. London combed the Internet and connected via Web sites with parents of other children with neuroblastoma. When he heard of promising research, he phoned the physicians or scientists involved, pressing them about whether their work could benefit Penelope.

Several times, the Londons say, their doctors told them they were out of options and advised them to take Penelope home to enjoy the time they had left. “More than John, I was willing not to try anything else because I just wanted Penelope to be comfortable,” says Mrs. London. “But John just couldn’t do that. And many times, he was right. Penelope would not be alive today if it weren’t for him.”

“Penelope was still laughing those deep belly laughs of hers, still running around and looking healthy,” says Mr. London. “I just couldn’t give up on her.”

Not wanting to miss time with his daughter, Mr. London stopped going regularly to work at the Manhattan office of SuttonBrook. Running his hedge fund from Penelope’s bedside at home, he often stayed up all night devouring medical research papers. One day, sifting through 600 papers that were presented at a conference, he read about an antibiotic used overseas that appeared to help a child with neuroblastoma. Pediatric-cancer specialist Giselle Sholler wrote that the child’s cancer went into remission after being treated with the antibiotic plus chemotherapy. Dr. Sholler agreed to treat Penelope.

The combination therapy seemed to work, says Dr. Sholler, an assistant professor at the University of Vermont who had been studying the potential treatment in mice. The walnut-size lump over Penelope’s collarbone shrank to less than the size of a pea, Dr. Sholler says. For three months, as Penelope’s curly brown hair began to grow back, she played like any other child, dressing her dolls, making vanilla pudding with her older half-sister, Isabelle, and teasing the family cat, Charlotte.

“She had an incredible ability to bounce back,” says Elizabeth Raetz, a pediatric oncologist at NYU Medical Center who has been treating Penelope and advising the family since she was diagnosed.

Through the struggle, Mr. London grew close to the parents of other children with neuroblastoma. “I felt so alone in going beyond what the medical establishment wanted me to do, that the parents of other sick kids were the only ones I could truly relate to,” he says. He invested $100,000 in a fund that is paying for Dr. Sholler to test the antibiotic in combination with chemotherapy in a clinical trial. Dr. Sholler has enrolled eight patients in her trial and most have had their tumors shrink without many side effects, she says, although she cautions that the tests are still at a very early stage.

“John’s passion for finding a cure for this disease and his daughter made this trial happen,” she says. “And all of these children are seeing a better quality of life.”

Cancer Breaks Through

Last November, Penelope’s cancer broke through again. After unsuccessfully trying two other experimental drugs, Mr. London was particularly anxious when a parent emailed him in March about Neotropix’s therapy.

The experimental medicine is a virus that strikes pigs and appears, in early test-tube and mouse experiments, to attack certain cancer cells in humans. The approach is new and risky, Neotropix Chief Executive Peter Lanciano notes, because it involves injecting a virus into humans that they presumably haven’t been exposed to before. The drug is still in its earliest phase of trials for safety. It was tested in just six human beings over the past year. The company hopes to finish the first stage of testing over the next 18 months, giving the virus to another 49 patients, most with small-cell lung cancer.

Mr. Lanciano says that the week he took over as CEO nine months ago, the FDA put Neotropix’s trial on hold because the first patient died. Only after four months of testing and analysis was Neotropix able to resume its trial, having demonstrated that the patient died from cancer and not the therapy.

That delay was on Mr. Lanciano’s mind when Mr. London and his supporters began calling. The CEO says he wanted to help, but he thinks the drug is too early in testing to be used safely by a child. To give Penelope the dose that was effective in mice, he says he would have to multiply the top dose used in humans so far by 100,000 times. Normally drug companies are careful to raise the experimental dosage in small increments to detect side effects before they become lethal.

“The question is: Can we really help or would we do more harm?” asks Mr. Lanciano.

Mr. London argues this is a risk worth taking. “We’re not talking of testing an unproven drug in a child who is perfectly healthy and running around,” he says. “My daughter is already in so much pain and is so sick she can’t get out of bed. If anything has a prayer of saving her, how can you argue it’s not the right thing to do?”

Investors have put about $14 million into Neotropix, which was founded in 2003 by a former Novartis AG scientist. Last year, Mr. Lanciano, a former executive at several biotech companies, took the helm.

Mr. Lanciano and Neotropix board members have expressed concern that the FDA will force Neotropix to put its trial on hold again if Penelope dies. FDA officials called Neotropix and reassured the company that this isn’t the case, Mr. Lanciano says. A colleague of Mr. London who is an internist had approached the FDA and asked it to deliver that message.

Despite the verbal assurances, the CEO says he is still worried. “You never have the ability to wash your hands of any adverse events the patient has,” says Mr. Lanciano.

FDA officials, agreeing only to speak generally about the issue, said the agency would not hold a company accountable for the death of a very sick patient receiving therapy as a desperate effort.

“The FDA has good appreciation for the fact that we’re dealing with people mortally ill and this is a last-ditch effort,” says Richard Klein, director of the agency’s HIV program. The notion that the FDA would halt trials over a death in such circumstances is “more of a myth, or urban legend,” he says.

Nonetheless, “there aren’t any absolutes,” says Ms. Delaney, the FDA’s cancer liaison. “We can never say: ‘We won’t pay any attention to safety’ ” when a patient gets a drug.

The Neotropix board held several meetings on the question of giving the drug to Penelope, Mr. Lanciano says. At one point, the board called an ethicist for an opinion. Urged on by the London family, patient groups and politicians, including the staff of House Speaker Pelosi and Pennsylvania Gov. Edward Rendell, lobbied on behalf of giving the drug to the child.

On April 18, the Neotropix board decided not to provide the drug. Yet calls from politicians and Mr. London’s supporters continued, Mr. Lanciano says. Finally, four days later, a Sunday, Mr. Lanciano sent out an email, copying them all.

“Tremendous pressure has been brought to bear on all levels of the company” to try to get it to change its position, he said in the email. “We will not do so.”

Mr. Lanciano, 50, says he sympathized, having lost his wife several weeks earlier to cancer at age 51. He tried to get her in clinical trials for pancreatic-cancer treatments, but she didn’t qualify, he says.

“If I were that father and mother with a dying 4-year-old, I’d be doing exactly the same thing,” says Mr. Neff, the partner at the venture-capital firm that has invested in Neotropix. “There is no right answer,” he says. “But in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development.”

Mr. London is now trying a new avenue. A day after Neotropix turned down Penelope, a friend Mr. London met on a parents’ Web site told him about another company, Jennerex Biotherapeutics, also with a virus in the earliest phase of human testing for cancer. Mr. London reached the company’s chief executive, David Kirn, on his cellphone and the two spoke for an hour. Dr. Kirn, a cancer specialist, agreed to provide his experimental drug to Penelope if a hospital would agree to administer it.

“If you are in the position where a loved one is dying of a disease, it is impossible to understand how any company can withhold something potentially beneficial,” says Dr. Kirn. He says his company has raised $10 million so far, mainly from individual investors who leave medical decisions entirely up to him.

William Carroll, director of pediatric oncology at NYU Medical Center, said Saturday he’s trying to get permission to treat Penelope with Jennerex’s experimental virus at his hospital. He needs approval from several hospital committees that monitor clinical trials and biosafety because the treatment is a live virus. That process would normally take months.

Dr. Kirn is pitching in to make the case. “We’re asking hospitals to compress a six-month procedure into a week and that’s very difficult,” Dr. Kirn says. “You’re asking them to bless a plan with less than the full data that is normally available. But you’re asking them to do it for a heroic cause — to try to save a child.”

Running Out of Time

Mr. London knows the family may have run out of time.

Wearing pink pajamas in a ninth-floor room at NYU Medical Center last week, Penelope, frail and partly bald, tucked her favorite stuffed bear under her arm as she watched an Animal Planet television show about a sick walrus that was saved. She cried now and again, sending her parents rushing over. A bowl of half-eaten oatmeal sat on the table; Mrs. London asked a friend to make it with extra butter to try to fatten up her daughter. Mr. London’s computer was open to the Web site he uses to keep family and supporters updated about Penelope.

The Londons brought Penelope to the medical center Wednesday because her pain medicine wasn’t working. They thought she needed stronger drugs to stay comfortable. The plan was to switch her to methadone, a powerful narcotic, and take her home.

On Friday night, after Penelope had struggled for two days with the pain, her eyes lit up when her big sister, Isabelle, appeared in the doorway. The little girl, who hadn’t gotten out of bed in days, pulled herself up — batting away the outstretched arms of her parents — and wobbled over to sit on the cot beside her sister. Later, when Dr. Raetz, the oncologist, stopped by, she found Penelope, her arm shaking a little, putting the numbers of a block puzzle into the right spaces, not randomly but meticulously, in ascending order. “She’s a very determined little girl,” Dr. Raetz said.

“We go into this with our eyes open,” Mr. London said, talking in another room out of Penelope’s earshot. “The chance of anything bringing her back from the abyss now is very low. But the only thing I know for sure is if we don’t treat her, she will die.”

Mr. London and his wife say they are searching Penelope’s big brown eyes for clues as to how long she wants to continue to battle for life.

For now, says Mr. London: “We see she still wants to fight.”

No more plans…..just a new adventure

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

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

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

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

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

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

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

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

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

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

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

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

xoxo