My idol. My theme song.

“Just you and me, Mom.”

I am trying my hardest to pretend this weekend is normal when all I really want to do is run away. Ro woke up bright and early as well as the twins as they had their baseball game to get ready for. Woody headed out early with them and Ronan and I waited for Tricia and Macy to pick us up to head over to the game. Macy’s eyes were full of tears as soon as she saw us and I tried my best to look away. It hurt so bad. Tricia drove my car, Macy sat in front and I sat in the back with Ro. We headed out to watch the twins play in their baseball game. It was hard for me to be there today, as I know everyone knows whats going on and I could feel the sadness in the air. I held on to Macy and Tricia’s hands, kissed my husband and cheered on my twins. I put on my sweetest smile, tucked Ronan away in his stroller and said hello to a few lovely team moms. We got to watch my boys play their game for about 20 minutes as that is all Ronan could handle. He is in pain and just wanted to go home. I left there with Tricia, Macy and Ronan in tow and talked Ronan into getting a shaved ice from our favorite place. He even went inside to pick out his flavors for him and his brothers. Macy had her first shaved ice today too. So proud I was the one to break her in. After our shaved ice, we headed to Have Java for coffees and Ronan then decided he wanted to go to Target. At this point, his wish is our command. We stopped by our house to drop off Liam and Quinn’s treats and Quinn hopped in the car with us to go to Target. It was the first time I have seen Ronan smile since we’ve been home. We went to town on getting him some new Star Wars guys and a Nerf Gun. After Target, we came back home and my mom had just arrived. Ronan was overwhelmed by the few people in our house as it was a little chaotic for him. Tricia and Macy said they were leaving and I begged them not to. I feel so strong with the two of them around. Tricia was only trying to be helpful and said I needed time with my family but I pleaded with her that she and Macy are our family. As soon as they left, I started bawling. I told them I just needed them at my house even if that meant they were picking weeds in my backyard. They both decided to respect the space that they think we need. I get it, I understand, but I am not my rational self these days. I sent Tricia a text telling her I was mad at her and as she had abandoned me. I know this is not the case at all, but not getting my way when I think I know best, is something I have a hard time with. I know that Tricia was right in leaving today. Nobody knows their place and it is a hard thing to watch. All I want is my house full of the people who I love most. Full of laugher, fun, and friends. But this is not what Ronan wants and I have to respect that.

After the Tricia fiasco, I went into straight psychotic mode and knew I was going to end up huddled in a corner somewhere bawling my eyes out. I didn’t want to freak out Liam and Quinn, so I decided I needed to take my anger out elsewhere. I ran my ass up Camelback Mountain as fast as I could and cried almost the entire way. I think Marisa called in the middle of my hike and I remember babbling to her about everyone abandoning me. She tried to calm me down, but there was no calming me today. I kicked that mountains ass and it felt good. I got to the top, prayed once again, and zoomed down as fast as I could. Tricia called me as I was halfway down the mountain begging to come and find me. I told her no, that I would be down soon. She in Macy trecked up as far as they could in their flip flops. As soon as Trish saw me she grabbed me and held me tight and we both cried. She told me how sorry she was, and how she would never leave me. I was the one who was sorry as I was a big, fat, jerk. Nothing in my mind makes sense anymore and the littlest things upset me. I know my best friend would never leave my side. I was being overly dramatic. I about peed my pants laughing when I saw what Macy was wearing while trying to climb up the mountain. Only a true friend would hike up Camelback in a red skirt and sandals, flashing everyone in sight due to the wind. As she said, “Thank god I wore underwear today.” I’m still laughing about that one.

I had them leave me at the bottom, so I could run home. It was there that I was greeted by my mom and Quinn who was riding his bike looking for me. So sweet. I was so happy to see him. He was so proud to come and find me. I am such a lucky mama; my boys love me so much.

I’m sick to death about Ronan. I feel like his body is giving out, but the worst part is his spirit and soul seem to be going as well. He is tired, grumpy, and just lays around. This is so hard for us to watch. It was only a few weeks ago that he was running around as if nothing was wrong. This is all happening way too fast. He just wants to be held and loved so that is what we are doing. I am still praying for a miracle and won’t ever stop. I keep picturing in my mind, him just getting better by himself because of all of our love. I’m hoping that months will go by and he will slowly come back to us. I dream of taking him in again for scans and hearing the words, “It’s amazing, his cancer has stopped spreading and is going away.” I dream of this a dozen times a day.

We have not had the talk with the twins yet, although I know they know something is going on. I’m trying to think of the perfect way to do it. There is no perfect way or perfect timing but as of now, I’m imagining Woody and I taking them on a walk to just let them know as little as possible. No talk about death, but explaining to them that the medicine is not working so we just need to love Ronan as much as we can. We will answer their questions as best we can, but have to try to make this as positive as possible. They do not need to know everything at this point. He is still here with us, he is still fighting but my baby is getting tired. I can see it in his eyes.

I’m scared to sleep now. What if I miss something. What if he takes his last breath and I miss it? I will never forgive myself. I’ve stopped taking my Ambien…. I’m obsessed with listening to his every heartbeat and watching him all night long. I sit and think about where he is going to go next…. somewhere with no more pain, but how can he not be in pain because I know his heart is going to be broken because he won’t be with us. This is going to be worse than any pain that he has been through at this point. He was meant to be with us forever. Not such a short amount of time as we had so many plans.

I’m restless and scared at what is going to come out of my mouth if I keep rambling on tonight. I love all of my family and friends so much. I love my Mr. Sparkly Eyes whom is always there to pick me up, especially when I’m at my lowest point. He is the only one who makes me smile now and who gives me such amazing advice. I love him for that. I love my husband for trying to be so brave, but he is so sad and I don’t know what to do except for try to be strong for him when he needs to break down. I sat on his lap tonight outside for a long time and tried to be the voice of reason and tried to reassure him that none of this is his fault like he is insisting that it is. He keeps saying it’s because of his bad genes. I told him that was bullshit and had nothing to do with this. It was just bad luck. Look at our beautiful perfect twins we have. My heart breaks for my husband and all I can do is love him, talk to him, and try to be strong for him as I did today, anytime he was around. I love him so much, that beautiful man of mine.

I’m ending tonight on that note. I love you all so much. Sweetest dreams to you all. I will never stop thanking you for your love and support.

xoxo

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.

How could my love not be enough?

Who would be so cruel to to this to us? To him? I don’t want him in the arms of “Jesus.” I only want him in my arms for the rest of his life, which should be a long life, where he belongs. I don’t want to watch this cancer eat away at his little body while I can do nothing about it except for sit back, watch it happen, and keep him as pain free as possible. I don’t want to have to go home and explain to my twins that their baby brother is hurting and that the medicine is not working. How the fuck am I going to do that? This baby is their entire world and he completed our perfect family. There was always something missing until he came along. He has added so much happiness and laughter to our lives and now we just get to sit back and have it taken away from us?  That is bullshit and I am so mad. If prayers really worked, my son would be healed because I have been on my knees praying since the day this happened, day and night, night and day. And I know thousands of you have done the same thing as well. Why isn’t it working? Who would be so cruel to take away this precious gift of mine? How is possible that there is nothing left to do except enjoy the time we have left with him? I feel like a failure. I failed my son. How is it that my love is not strong enough to save him because I have never loved anything more in my life. I’ve  fought so hard to keep him here and now what? It doesn’t matter because as Dr. Mosse said, we may only have weeks left with him. How in the world can this be true? What am I going to do with not hearing the little pitter patter of his feet running around the house? What am I going to do not having his big blue eyes to look into? How am I not going to hear him say, “Mom! I love you to the moon and back?” How am I not going to crumble up and die?

How do you plan a funeral for your 3-year-old? I’ve already started that process, sending out crazy texts to Tricia and Fernanda blabbing about how this has to be something different, it cannot be a circus, it has to be small because Ronan never liked a ton of attention. Nobody is to wear black, everyone has to wear something colorful and bright because that is what Ronan brought to our world. All I want is a miracle and to not have to think about any of this, but we are facing our worst nightmare and have to be prepared as we do not know what the future holds. If the future holds my Ronan leaving this earth, well that is something more than I will know who to handle. And I don’t want to hear about him “earning his fucking angel wings.” I HATE THAT SAYING. No child should ever have to earn their wings; ever.

I spent most of today cuddled up in bed with Ro. He was back to his feisty self, playing and had his bossy boots on all day long. We have his pain controlled. Woody and I both spent the day taking turns breaking down. We seem to balance each other out so well. He would cry and I would be strong, and vise versa. He sat and stroked my hair while telling me that there is nobody he would rather go through this with than me. We made this cancer with Ronan such an adventure, enjoying New York and taking on the world while never letting go of hands. Somehow, our love for each other will get us through this. It just has to. My husband is too good of a man and I refuse to fail him too, but all I really want to do is dig myself a deep hole and never come out.

I’m sorry . I’m not very inspiring tonight as I just feel a ton of anger. I really need to punch something because this is so not the way I saw things going. I was always so sure that Ronan would beat the crap out of this disease. I still feel that way. I am not leaving his side, ever again. I’m not going running, shopping, to the movies, or out of my fucking house unless he comes with me. I will not miss a second of being with him. I will hold him and love him and kiss him until he gets annoyed and tells me to knock it off like he often does. I will not give up.

We are flying home tomorrow thanks to the most beautiful family that has been put on this earth. You know who you are my dear, sweet girl and I hope you know how grateful we are. Please give your hubby an extra big smooch tonight as you two are absolutely the most selfless people I have ever met. Who else in the world would make such a thing like this happen at the drop of a hat? Nobody. It is because of you, that we will get to bring our very sick, precious boy home without the eyes of strangers on us and with him being as comfortable as possible. Thank you, Dolly. I love you.

As we get home, there are so many of you that we would like to see, but we have to keep things at home as calm and peaceful as possible. So, if you would like to stop by, please call first and don’t be offended if we tell you no. It’s not out of anything but love for our son and we have to make sure he is as comfortable as possible. A lot of people and house guests seem to do nothing but stress Ronan out and that is the last thing we want to cause. We need this time together, more than ever. And please, if any of you see our twins, don’t mention anything about this to them. Woody and I have to be the one’s to sit down and somehow find the words to explain this all to them. This breaks my heart more than anything. We will do our best as parents but nobody can prepare you for the conversation that is about to come. Just thinking of the look in their eyes is enough to kill me. Our family was never meant to be a family of 4. NEVER NEVER NEVER.

I am so sad. Sad beyond words. All I want is to get Ronan home and back with his brothers. Back to his house. No more clinic visits or hospitals. Enough is enough and the only things that will heal him will be a miracle from above. If my love could save him alone, we would not be in this situation. I will never understand how my love has not been enough.

Thank you all for your continued love and support. We will keep fighting and do whatever it takes to make Ronan the happiest little boy on this earth. We will never give up on him.

Love you all.

xoxo

And P.S. FUCK the royal wedding. Really, 16-64million dollars? That makes me sick to my stomach. This world needs to get a clue as to what is really important in life. All that money could be spent in such a better way, like saving the lives of millions of children. I’m embarrassed and ashamed for them. I hope their child never gets cancer and they never have to deal with something like this. With all that money, a cure could be closer to being found.

Life’s no way to treat an animal

It is with a heavy heart tonight that I tell you we are returning back to Phoenix. We came out here, full of hope; yet Woody and I both knew that it was going to be a tough road to travel. We met with Dr. Mosse about starting MIBG therapy to try to get Ronan’s disease under control; but with much sadness in her eyes she told us that this therapy would never cure Ronan or much less do anything for him. I knew this morning before we left the RMH for CHOP that there was little hope, as Ronan’s pain is getting much worse. I do not in the least regret coming out here. It was something that Woody and I, as parents had to do to make sure we could know in our hearts that we tried everything we could for our son. I believe it was a gift to have Dr. Mosse deliver this heartbreaking news to us, as I would not have wanted to hear it from anyone else. I cannot even express to you what an amazing woman she is and I am so thankful that she has had the chance to spend a little time with our son. I know she will work harder because of him and will one day, find a cure for this disease. After Dr. Mosse told us that the treatment would not work, Woody broke down and I went into complete shock. I could only focus on holding my husband, watching his tears, and just as he started crying, it started pouring rain outside. The rain only lasted about 5 minutes on this sunny Philly day. I know the reason for this rain.

The rest of today has been a blur. We have Ronan’s pain under control and are planning to head back to Phoenix on Friday. Woody and I have spent most of the day crying, talking, and whispering together. We have made promises to each other that we will keep. As Woody said, “Cancer will not take anything more from us than it already has.” It will not destroy our marriage, our family, our boys. We will take control over the things that we can. While Ronan has been awake today we have been very hush hush about everything, as he does not need to know that our hearts are broken. We have made phone calls to a few people, but that is about the extent of the phone calls today. All of this is just too much. Woody and I have both decided that we hate the saying, “Everything happens for a reason.” There is no reason for something like this.

We have some tough decisions to make yet I have no doubt that our little man will guide us though. We will do what is best for him and respect his body, his life, and his time. I have spent the entire night curled up next to him, singing to him, whispering sweet nothings in his ear, and kissing his little face. Ronan has filled my life with so much more love than I ever knew existed. The almost 4 years that I have had with him have been pure magic, bliss, and we have an unbelievable bond that will never be broken.The thought of being without him is eating at my soul, as he is the best thing that has ever been mine. I don’t know how I am going to go on without him but I have a feeling my twin 7 year olds will be great helpers. They deserve the best life possible after living through this nightmare and Woody and I are determined to give it to them.

I am not brave, strong, or fearless anymore. I am just a mom. A mom to the most beautiful boy that was put on this planet and whom I will think about every minute of everyday for the rest of my life. Being his mom, was the best thing that I have ever done and will ever do.

Tonight, I asked to speak with Dr. Mosse one more time. We went alone in a room and I told her, as a mom, I had to know in my heart that I had done absolutely everything possible for Ronan. She told me I had done that and more. I begged for clinical trials, asked about things I had heard about in Germany, Canada, homeopathic hospitals…. asked for anything. She told me if there were anything, she would have done it for us. I asked if we made mistakes on the choices we made as far as his treatment went. She said absolutely not, and that we couldn’t look back. His disease is everywhere and spreading so rapidly that the best thing we can do now is just love him like we’ve never loved him before. I cried to her, asked a few more questions, and thanked her for her compassion and grace.

There are not enough drugs in the world to knock me out or make me numb to this. Nor would I take them if there were. As of now, you know I am still hoping for a miracle and not giving up. I will never give up on Ronan but I will respect him and his life. He is going to lead me to where he needs to go, when it is his time. I, as his mother, could not ask for a braver soul to surround me at this time. I will not leave his side until he is ready for me to go.

Please continue to pray for Ronan and our family. Please don’t take anything in your life for granted. And please don’t send any mother fucking flowers. I told Fernanda tonight, if anybody sends me flowers, I will lose it. If you feel compelled to do anything, send a card, write on my blog, spread around Ronan’s story, ask for prayers, donate blood or platelets, or donate to his foundation. I will do something amazing with the money we are raising and I know it will come to me when the time is right.

Thank you to all of our friends and family who did not disappear during this time and who chose to surround us with the love that we so need. Thank you to all of you who love our baby even without knowing him. I am so thankful for all of our nurses and doctors who have stood by our side and who continue to do so. Please send us your strength to get though this. We are a strong family, but we are about to walk through HELL, even more so than the past 8 months. We have to come out the other side.

Love you all,

xoxo

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -“Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

Introducing……

http://www.theronanthompsonfoundation.com/

So excited!!!! Amy Jane, you are unbelievable!!! And Brian, Melissa, and Stephen for all your hard work. It is beautiful!! Thank you so much!!

One child’s journey through MIBG Therapy

http://www.research.chop.edu/programs/maris/docs/mibg4.pdf

I’m kinda liking this Philly place

First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.

I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.

I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.

Dear Maya – The Strongest Mom in the World!,

I think of you and Ronan every moment of the day.   From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts.  As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son.   Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.

I believe that Fate, Faith, and Love are amazing guides.   Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge.   Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments.   I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path.  I do believe that it is all a part of each step to make Ronan happy and well.  What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains.   Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize.   Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger.   When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure.  I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city.   It is those memories that make NYC a place of peace for Ed & I.  Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him.   You have done that!!!!  You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!

I always felt as if Jack was a gift given just to me.   His amazing life set my path and gave me forever strength.   He showed me what love was really all about.  He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person.     I know in my heart, you both will win!  You have already won by finding the strength to fight for each other.    You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace.   My angel is watching over your angel on earth!!!!

All my love and respect,

Dianne

I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.

Sweetest dreams!

xoxo

Yael P. Mosse | The Children’s Hospital of Philadelphia

Yael P. Mosse | The Children’s Hospital of Philadelphia.

Hellllllooooo Philly!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I hope you all have a beautiful day.

xoxo

  • Instagram is my BFF

    Do you guys want a bedtime story for tonight? Please head over to rockstarronan.com and read the words of my beautiful @knjoy. I am beyond blessed to have this amazing soul in my life. #ronan #fucancer #rockstaronan #empiregogold @empirestatebldg #beboldgogold #ronan #rtf We woke up like this...flawless. Or just glitter. #ronan #fucancer #empiregogold #wearetheglitterpeople #humansgogold #rebelswithacause #becauseachildslifeisworthmorethangold #rockstaronan #whereispoppy?
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