Fight Like a Rockstar

Ronan. Hi baby. I’m missing you so much tonight. But what’s new. The missing part of you is constant and is something that never goes away. The weekend is almost over. Thankfully. It was fine. O.k. Alright. I did my best. I had a lot of busy work to tend to. Busy work that I keep telling myself is going to get us somewhere. Busy work that I keep telling myself, is going to make a difference. Busy work that I know you would be proud of. If I didn’t have this busy work, I would be sitting around, pulling my hair out. I would be in the corner, curled up in a ball, in my bedroom not wanting to come out. Not just some days, but every single day.

Sunday Funday. Right? No. Sundays that I hate. Sundays that are filled with an eerie stillness that I detest. I stayed in bed until 1 p.m. Yup. You heard me. I could not fall asleep last night. I tried. I wrestled with my sadness/anger/tears, until 4 a.m. I almost punched your Daddy just because I was so annoyed that he was sleeping so peacefully next to me. I don’t know how I pass the never-ending time that exists during the night. If I am going to be a Vampire/Zombie, I am going to have to start coming up with some productive things to do, besides listening to the screaming inside of my head. I need a crazy, productive hobby. I think I need to make a “Go To,” list for the nights that I am so restless of things that I can do. You know how I LOVE a list.

I made myself get up out of bed today. I took Quinn and we ran some errands. We went to Target. Your favorite place. As soon as we were walking in, there was a lady who was in front of us who was getting her cart. She was bald. I took off my “F U Cancer,” bracelet and simply said, “I have something for you.” I gave your bracelet to her. I don’t think she even read what it said as she quickly just gave me a thank you. I needed nothing more. I hope your bracelet makes her even more mad at cancer and it makes her work harder, to fight harder, like a Rockstar. Like you always did. Like I will continue to do, for you.

Strolling through the aisles of Target today…..ugh. I cannot concentrate enough to navigate my way through that store anymore. Everything in it reminds me of you. Happy, lovely Target. Full of your Paul Frank Monkey friend, Julius. Full of your Star Wars guys. Full of your Burt’s Bee’s Coconut Soap that I used to wash you with. Full of the Slurpies that I would always have to buy you, just to get you to sit in the cart. But you never did. You would have hung on the side of the cart instead. You would have tried to ride one of the display bicycles. You would have hidden from me in the racks of clothes. Your giggles would have filled the entire store and made my heart skip a beat. They always did. Today, I took Quinn there instead. Quinn my little helper who takes on the responsibility of pushing the cart, trying to pick up the case of water for me, and who helps me remember the list of things I needed, because I left my physical list, at home. If it would not have been for Quinn today, I would come home without the little list of things we needed. I would have abandoned our cart to cry in the car instead. Thank you, for him.

After we left Target, I told Quinn we needed to go to Smart and Final. He was annoyed and wanted to know why we had to go there and why we couldn’t get all of our drinks, at Target. I told him that Smart and Final is the best place to buy Liam’s Gatorade and that they are the only place I can find my Mango/Peach Coconut Water. He tried to talk me out of going, but I didn’t listen. Oh, how very happy I am that I insisted on going to Smart and Final today. It made my miserable Sunday, absolutely amazing. We got into the store and of course we got the cart that just didn’t work right. Quinn was laughing at me because I insisted that we would just make the best of it and use the cart that only wanted to turn right. I came up with some amazing there is a lesson in everything, kind of metaphor for him. Something along the lines of working through a tough situation and making the best of it. I made him laugh when I crashed into the Gatorade aisle. I told him I was not giving up on our crazy cart, to trade it in for a new one. I don’t know what I was trying to accomplish with this at the time as it would have been so easy to just go and get a new cart. There is a lesson in everything, right? At least that is what I was trying to explain to your already too worldly/knowledgable about life, 8-year-old little brother today.

As we were checking out, I noticed the side of the counter was lined with little flyers that read, “Kids 4 Hope.” Hmmmm….. I thought as I went to read the fine print. I thought to myself, I’m sure it has something to do with anything but Pediatric Cancer. I almost passed out when I saw that each dollar donated, was in fact donated to funds for Pediatric Cancer. I asked the girl who was scanning my items, what exactly this was for. She told me you could purchase a flyer in someone’s name, for a dollar, for Childhood Cancer. I had to take a minute to absorb the amazingness of this. After a few seconds, I said, “Can I buy 50?” She looked stunned. She replied back, “50? Really? You want to buy 50 of these?” “Absolutely,” I told her. Quinn sat back, quietly observing. The girl counted out 50 little flyers and I than told her that you, my son, had passed away from Childhood Cancer. She got quiet, handed me the 50 flyers, a pink Sharpie, and some tape. She asked how old you were. I told her 3. She told me she has a 3-year-old, and could not imagine.

After I paid for our items, I moved over to the other counter where Quinn and I stood and wrote your name on all the donation flyers. I looked over and the girl who had helped me, and she was ringing up her other customers as the store was super busy. She was bawling. That in turn, made me start to cry, and your poor brother Quinn….. he did not know what to do. I did not know what to do, so I just continued to cry and fill out your name. I tried not to get angry at all the customers who said they would NOT like to donate a dollar to Childhood Cancer. It took everything I had not to pull up your picture, shove it in their faces, and ask what was wrong with them! It was only a dollar! You were worth so much than a dollar! And it’s for kids! Who in the world says no to that?!?! As I witnessed today, a lot of people. It just goes to show you how much the lack of awareness for Childhood Cancer, truly does effect the outcome. People won’t even give up a dollar. Standing in that Smart and Final today, I vowed to myself, once again, to make this change.

I went over and talked to the sweet girl that rang up my groceries today. I asked what her name was. She told me it was Ida. I told her how beautiful it was. I gave her one of your bracelets. I asked to speak to her manager because I wanted to ask him how much he knew about where this money was actually going. He came out, I introduced myself, and he didn’t know much. He went back to get the print out that the store was given for this Kids 4 Hope. I told him I was amazed that they were doing this in their store, for the ENTIRE month of October as this is unheard of due to Susan G. Komen. Everything for the month of October, goes towards Breast Cancer research. I thanked him and practically skipped out of that store today with our wobbly cart. I told Ida I would see her soon.

I came home and googled the handout I was given. It’s legit. You can read about the boys who started this, below.

Troy and Jake Paul are two Los Angeles natives who combined their passion for basketball and their desire to help other kids when they formed their charity, Kids 4 Hope.

When their mother Renee was diagnosed with cancer a few years ago, Troy, now 13, began collecting bottles from local businesses and neighbors in order to raise money for his mother’s newly started charity,Racing For Hope, which benefits City of Hope. “We recycled the bottles and made $1,200,” Troy says, “and we gave the money to our parents’ charity.” But from that point on, Troy says, “we realized we wanted to be able to raise more money, and wanted to branch out and start our own charity.”

The desire to help children suffering from cancer came when the boys saw what their mother went through as she battled the disease. Jake, now 16, says they saw “how hard [battling cancer] can be for an adult, but trying to grasp a young kid going through that–I couldn’t even imagine what that would be like.”

This led the Paul brothers to start Kids 4 Hope, which, according to its website, “is dedicated to raising funds to support City of Hope’s research, treatment and special programs for all of the children battling cancer.”

In order to raise money, the boys turned to their biggest passion–basketball–and decided to create an event that would be both fun and charitable. “We wanted a way to put our own personal touch on the charity, rather than just raise money with a regular fundraiser,” Jake says, “so we incorporated something we both like, which is basketball, and made it a fun way for kids to help other kids.”

Jake and Troy Paul hope both Kids 4 Hope and its events will inspire other kids to take up causes they can enjoy also. “Of course we would love to raise money through this charity,” Troy says, “but hopefully kids can see what we do and take something they love and incorporate that into a way to help people.”

Their advice for kids looking to start charities of their own or looking to get involved in a good cause? “Find something that you’re passionate about, because it’s great to help kids, but it’s easier if you are doing something you love,” Jake advises. “The main idea is any way a person can help is positive. You are helping someone else, so do something that makes it seem like more fun than work.”

Can I kiss these two boys, please? I would like to kiss Smart and Final while I’m at it. Look at how these two young boys, took something that they believed in, and made it into something so beautiful.Well, I believe in something, Ronan. I believe in YOU. I believe that you truly are going to change the face of this disease so that someday, there will be a cure. I really needed to be reminded of this today, Ronan. That anything is possible. Well, almost anything, Ro. You know what I mean by that, baby.

Alright my lovie. I have to try to shut off this mushy brain of mine for the night. I’ve got an early running call in the a.m. I love you to the moon and back. I hope you are safe. G’nite my Babydoll.

xoxo

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

Twinkle Twinkle little star

I had the worst dream last night. It was all about scan day. We woke up and got ready to go. Fernanda was downstairs waiting for us, with coffees in hand and off we went. We arrived promptly, like always, and soon Ronan was called back to anesthesia; I held him tightly as they injected him with his Propofol, and kissed him as he went to sleep. I left him on the table and covered him up with his blanket, Gigi. Out in the waiting room I went and fell into Fernanda’s arms. Leaving Ro for anesthesia is never easy on me, especially without Dr. Maze there to be the one to take care of my little guy. Fernanda and I gathered up our things and pushed Ronan’s stroller up to floor 9 to let the waiting begin. And wait we did. For fucking ever. I think we sat for a good 2 hours. Fernanda tried her best to distract me with her her stories; but there was nothing that could take my mind off of the things to come. Soon, I saw Dr. Kusher, the man I had been waiting for. He was back doing Ronan’s bone marrow aspirations. He breezed right past me without making eye contact. This was my first clue. My stomach dropped to the floor. Fernanda goes, “There he is, let’s chase him down to see what the results said!” I just looked at her and told her no. He knew we were waiting and would get to us when he was ready. By this time, Ronan was waking up from the anesthesia. We went back to get him and my little groggy guy just wanted to be in my arms. I put on his pants and shoes and picked him up. We went back to the waiting room to wait once again, for Dr. Kushner. We sat and waited and fed Ronan some food as he was hungry. As I was getting up to do something, my Claude necklace, the one that I always have around my neck for important days; that has the tooth of St. Claude in it, fell to the ground. It had somehow come detached from the chain and I scrambled to pick it up. I picked it up and tried to figure out where it had come detached. So weird, I thought to myself, as the clasp was not broken. I did my best to ignore the St. Claude incident and told myself it was not a sign. I didn’t even tell Fernanda this which is not like me at all. I tell her everything. Soon, the kid at the front desk told us Dr. Kushner was ready for us. We were taken back to room 7 to meet with him. As soon as I saw him my stomach dropped to the floor. He couldn’t even look me in the eyes. I looked at him and said, “No no no no no no no.” His eyes were wet and he said in his weakest voice something like, “The cancer is spreading. The chemo did not work.” I clutched Ronan, sat down in a chair because I was going to pass out. I don’t remember much more. At some point, he recommended we call Woody on speaker phone. I sat there and listened as Dr. Kushner tried to explain things to Woody. I watched him as his eyes kept getting wet. At one point I asked him if he could please give me just an ounce of hope. Just one ounce… something. He looked at the floor. I went into shock and asked him if this ever gets any easier for him. I told him it couldn’t possibly ever get easier. He got up and turned his back to me. Where did the man go that said he would fight for my baby with everything he had? Because that man in front of me was nowhere to be found. I saw a coward. A man who had completely given up on my child. I somehow gathered my strength and got up. I gave him a hug and told him thank you. I told him he was a good man. I walked out of the doors to his office with Ronan running beside me. Dr. Kushner, the man I had put all of my faith into, had given up on my child and there was no looking back.

Fernanda and I walked back to the RMH. I remember nothing about getting back to our room. All I knew is I wanted to get home, back to Phoenix, asap. I curled up on my bed while Ronan ran around like mad and Fernanda buzzed in the background making travel arrangements and figuring out what to do next. I remember something being said about needing to get me Valium. I remember sitting on the floor playing with Ronan and drinking a coconut water. I remember taking the coconut water and throwing it as hard as I could across the room while I watched it hit the wall and liquid splashed everywhere. I told Ronan we were having a party and I wanted to see if my water would explode. He then took a can of root beer and poured it everywhere to make it explode like a volcano. I think Fernanda got in on the fun and dumped her Diet Coke all over the floor on a blanket on purpose. We sat and had a fucking pop throwing party because what else could we do? It made perfect sense at the time. She then spent the next 7 hours packing up our room, running all over the city to buy more suitcases for all of our shit, did laundry, cleaned our place, got me my Valium, composed an email to Dr. Mosse at CHOP regarding starting Ronan on MIBG therapy and we finally got Ronan into bed so he would settle down to sleep. Fernanda watched as I rubbed his back and he asked me to sing him “Twinkle Twinkle Little Star.” I sang to him our song as I do every night. We all fell asleep around 2 a.m. Our alarm woke us up at 3:30 a.m. as our car was picking us up at 4 a.m. to get us to the airport. 9 suitcases checked later and we were at our gate. The flight was blurry and Ronan slept much of the way. I did too due to the Valium and Ambien. I asked Fernanda for more Valium and she told me no. I cried on our flight and watched her cry by herself in the aisle across from me. She looked like an angel. I woke up at one point and looked down at Ronan and I saw his pinky intertwined with mine. That’s how I know this is all a nightmare and none of this is true. Because his little pinky of his refuses to let go of mine, even when we are both in a deep, deep sleep. As we were getting off of our flight I hugged Fernanda tight and told her that she was the best friend I have ever had and how nobody else would have done this for me. She told me there were a million people who would have done this for me and I then told her yes, but not the way that she did. She came in, in the middle of the biggest storm of my life and attacked it head on and beat the fuck out of it. I have no idea how in the world she did this and I kept offering to have Woody fly out to help us. She looked at me like I was crazy and yelled at me “For what?!?! We can do this! I’ve got it under control!” I’ve learned not to argue with a Mexican Goddess. You will never win.

I somehow made it home, back to the cleanest house possible and to my twins and in-laws. Before I knew it I was in my bed and passed out. I woke up to my husband and 3 boys playing away. The days are blurred and I’m not really sure what is going on. I went out this morning to meet up with my Mr. Sparkly Eyes. I told him how disappointed I was in Dr. Kushner and how I am learning to lower my expectations of people because I set the bar so high. He agreed with me and also tried help me understand that he is sure Dr. Kushner feels like he failed us and is heartbroken. I told him I understood that, but all I wanted was for him to have a bit of decency and compassion which I felt he completely lacked. I just want somebody to be mad at and I know that is not fair, but I have a right to be mad at the way things were handled. Dr. Kushner had his freaking assistant call Woody today to tell him he thinks we should go to CHOP for MIBG. He didn’t even call Woody himself. That is not only rude, but classless. And this is a man that I completely respected, but I have come to find out that when push comes to shove and times turn to the darkest hour, the people who you think will be there until the end for you, can turn on you in a heartbeat. I told Mr. Sparkly Eyes that we refuse to give up and as long as Ronan is still fighting, we will fight as well. He more than agreed and promised to never give up on Ronan, told me that he, himself, is not going anywhere and all I have to do is say the word and he will be at our home to sit with me or whatever I need. I told him how I didn’t know how I was going to write this post, as I have been trying for days but lacked the words. He told me to just be honest, like I always have been. So here I sit, writing the most honest words that I have ever had to write in my life.

I had my house full of my dear friends and family today helping to get everything unpacked. Stacy, Karen, Liz, Fernanda, Heidi, and Mrs. Martin all buzzed around doing everything they could. I don’t think I’ve done much of anything except Heidi got me out for a pedi/mani and I got to see Marisa who met me at my nail salon to hold me.

What’s next? First, I have to wake up from this nightmare because I refuse to believe it is real. Ronan is running around like mad, playing with his brothers and having lightsaber wars with his favorite cousin, Luke. Once I wake up, we plan on getting on a plane this Tuesday to take Ronan to Chop to start him on MIBG therapy. This is a fairly short therapy, but intense. We will get Ronan through this. As my friend, Ed said to me, “It takes one child to change the odds.” That is the best thing I’ve had said to me all week. Until we leave on Tuesday, I’m going to do my best to get thought these next days. I’m going to hug all of my boys extra tight and surround myself with all the love I can get. As much as I want crawl up in my bed and not come out, I have 3 boys, and a husband whom I love more than the stars combined to try to remain strong for. I still have hope, faith, and a belief that Ronan will be the miracle to come out of this.

I love you all. Thank you for your continued love, support and prayers. This is not even close to being over and we will never give up on our Ro.

xoxo

P.S. If any of you ever see that angel of mine, Fernanda Borletti on the streets, at the grocery store, at school, wherever….. please wrap your arms around her and whisper to her that she is an angel on this earth. She deserves a god damn Noble Peace Prize.

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

Sometimes it takes a really good fall to know where you stand

Where have I been the past 24 hours? Dead. Or the closest I’ve ever felt like dying. Yesterday, Dr. Kushner came to see us and we got the news that Ronan’s bone marrow is now longer clear of Neuroblastoma. All 4 sights from his scans a couple of weeks ago here are positive which explains all of the activity on his MIBG scan. The scans at PCH came back as clear… but that was 6 weeks ago. The most recent scans here show that his bone marrow is positive again which means that his cancer is spreading and we have to get it under control. So, I spent all of yesterday in a thick fog with my head spinning. I made it though the day while Woody worked but by the time he returned to the hospital, I was a complete mess. I spent much of the evening sneaking out of the room while Ronan slept…, throwing up. At one point, I found myself huddled up on the floor rocking back and fourth with my head spinning so quickly I felt like I was going to pass out. It was the first time in my life that I could not get myself back under control. I was sweating, crying, and could not even form a thought. My sense of smell was so heightened, that I couldn’t deal with any of the smells in the hospital. The smell of food and cleaning products combined were enough to make me want to check myself into the loony bin. When Woody returned for the night I told him I had to leave, that I needed some air. I somehow managed to get myself back to the RMH and passed out on the spot. I woke up around 11 p.m. with my raging headache that refused to go away. I got in the shower, dressed and walked down the street to the store to get some Coconut Water to try to rehydrate myself and take my Advil. I returned to the RMH still a wreck but forced myself to take my Ambien(which is the only way I sleep now) and fell asleep with my head still pounding and the thoughts consuming me that I cannot do this anymore, I cannot survive this, I cannot go on.

I woke up this morning, eyes bloodshot and red, still feeling defeated and as if I wanted to die. I cannot pick up my phone at this point to talk to anyone… but this morning when my friend, Ed called, I instantly knew I had to answer it. I was crying, I was still a mess and I didn’t hide it. I was on the floor of my bathroom as I listened to him tell me how he had pulled some strings and that the New York Knicks would like to host us at a basketball game. Did I forget to mention that my in-laws are flying out here on a whim with Liam and Quinn today? They are. We need them. Through my tears, I told Ed how excited the boys’ would be, how happy that was going to make them. My life now is all about squeezing every ounce of happiness for Liam, Quinn and Ronan, that we can from it. After I listened to Ed tell me how everything was going to be o.k., how I was a tough bad ass chick and I could do this it suddenly became very clear to me. I can do this and I will do this… this is not the end. Not even close. I can’t give up no matter how badly cancer is trying to win. I will keep fighting for my family, for my friends, and most importantly, for Ronan.

I picked myself up off the bathroom floor, showered, and headed to Starbucks before I returned to Sloan. On my walk there, I found myself getting stronger again. I texted my Mr. Sparkly eyes who is so amazingly helping me through all of this, even through all of his worry and pain for us. I told him about my breakdown, and how I took all of this morning to think about things as clearly as I can. How I have decided that I can do this because if I don’t, everybody loses and I am too strong to let that happen. How I won’t let cancer take my baby, my family, my friends or me. I refuse to give in but sometimes I have to breakdown in order to get my strength back. He texted me back something about my unbelievable insight, bravery and compassion. I thanked him for loving me and never giving up on me. I have so many people that believe in me and who know I can get Ronan through this. Last night, I got a taste of cancer winning and it was the most awful thing I have ever tasted in my life. I almost let it win. Today is a different story. Today, I walked the streets of New York throwing fists in the air and refusing to give up. I have too many people counting on me to let that happen. I am a mother and that makes me the toughest person in the world; next to Ronan.

We will be discharged from the hospital this evening and Ronan seems to be feeling better. We have taken him off the morphine drip and he is now wearing a little pain patch on his skin. I know the radiation is working just like this round of chemo is. I know we will get his bone marrow clear again. We will scan Ronan in 2 weeks to see how this chemo has worked. Depending on the results, we will either do another round of the same thing or go on to the NK-Cell trial like we had originally planned. I have come to learn that plans cannot be made when your child has cancer. All I can do is pray to God that Ronan remains pain free, he is happy, and we will take everything day by day. As much as I love a plan and how hard it is for me to let everything go, I have no choice. Every second of the day I have with Ronan is a gift and I have to make every second count. He has no idea his brothers are coming tonight and he is going to be so happy. We have decided that Liam will stay until Tuesday and then fly back to Phoenix with Mimi and Papa. We will keep Quinn here with us until April 3rd, and he will fly back to Phoenix with Woody. Ronan needs his brothers and if it means we have to pull them out of school for a bit, so be it. Our as a time as a family together, getting Ronan healthy is the most important thing in the world. Everything else can wait.

To all of my family and friends calling and texting. I’m sorry if I don’t respond. I listen to your every word but the one thing I cannot handle right now is talking, listening, and reading your words as you all cry and fall apart. It scares me to see you all so scared. I need you all to be strong for me right now and I can’t handle your tears. It hurts me to see you all hurting which is why I promise to be stronger for you. I need your words of encouragement… I cannot hear how your hearts are breaking and I know it is unfair of me to ask that all of you hide your pain, but that is what I need right now. There will come a time when I will be able to cry with you and you’d better believe that it will be because of tears of joy. I refuse to think any other way.

Thank you so much for all of your love that surrounds us and please continue to pray for us, for Ronan. We need all the positive love, light, and strength that we can get.

xoxo

Yoga, Hiking, and Tears

What a busy, yet peaceful day. I started off my day joining my friend, Stacy, for a hot yoga class. An hour and 15 minute class where I was drenched in sweat and tears almost the entire time. I have not done a yoga class in years, but it has been something I have dying to get back into. It was almost too much… intensity wise. I felt broken, vulnerable, sad, yet strong and calm too. Stacy looked over at me at one point while we were standing up doing our poses and saw the tears pouring out of my eyes. She came over and held me for a minute and then asked if I needed water. She then goes, “What about Coconut Water? I have some!?” She made me laugh out loud at that one. Ah yes, Coconut Water makes everything all better. We had some after Yoga and it was the best Coconut Water that I’ve ever had in my life;) Thank you Stacy for the yoga today… I really hope to get a bunch of these classes in before we start isolation. It is a good way for me to let everything go and release all of the things I am feeling.

After yoga, I came home showered and got ready to head over to The Village for Liam and Quinn’s basketball game. I took Ronan with me. He was in heaven and spend a lot of the time helping Woody coach. He even had his own whistle hanging around his neck. It was adorable and he loved being out with his brothers. Liam and Quinn did great as always. They are such good little basketball players. Watching them play basketball is one of my favorite things to do in life. I am so thankful I was able to go today; it meant a lot to all of us.

After basketball we came home and I took a long nap. I think the hot yoga and all the crying I did this morning did me in and I had a bad headache the entire day. I felt better after I woke up and around 5 I headed out to church, a.k.a. hiking. I needed an active day today. It has been way too long since I’ve been in touch with nature and hiking is something that I have been missing so much. I ran up the mountain, watched the sunset, and prayed my ass off. It was one of the most gorgeous evenings tonight and hiking always clears my head. Today was absolutely perfect in every way.

The boys’ have their cousin, Luke, staying the night tonight. He is a fifth grader at their school and all three of my guys idolize him. Woody took them to play basketball at The Village and then to pizza tonight. If my boys’ turn out to be anything like Luke, I will feel like the most blessed mama in the world. He is a parents dream come true. Such a sweet soul, funny, and is so good with all of my boys’ but especially Ronan. We love having him here and spending time with him. I think it is really good for Liam and Quinn; it is good for them to have somebody to look up to who is a little closer to their age. Thanks Heidi for letting us borrow your Lukey. We love him like one of our own:)

Tomorrow we are having another low key day. I’m going to breakfast with a few girlfriends to go over isolation things in the morning and then we are planning on watching the Superbowl over at Uncle Jay’s house. He lives right around the corner so if Ronan gets too tired, I can just walk him home. I may try to sneak in another hike before my insanely busy week starts. My body is already beyond sore and it is a feeling that I miss so much. Before all of this exercise was my stress relief. It’s hard not to have the consistency of that in my life anymore as I don’t have any other outlets. I’ve got to make the most of these couple of weeks before transplant.

Ronan is curled up beside me. Luke has been in my room reading him some books and cuddling up with him. So cute… he loves to love on Ronan. It has been such a nice family night at home tonight.  We have really been needing this time together. I’m finally getting a little sleepy so time to shut things off. Hope you all had a great Saturday; thanks for checking in with us. Sweet dreams!!

xoxo

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

A Margarita, Sangria, or George Clooney??

I talked to Dr. Wood this morning and Ronan’s ANC counts came up from 0 to 25. This still doesn’t mean we will be getting out of here anytime soon as they have to be up to 200 and rising for Dr. Eshun to discharge us. Dr. Wood said he expected us to be here until next week. Our little monkey is getting restless and tired of being here. How in the world am I going to entertain him until next week? We will just have to make due. My friend, Fernanda, came and sat with Ronan for 4 hours today so I could run home, shower, do some laundry, and run some errands. I got a chance to catch up on the phone with my Susie and Bethany. Both of those phone conversations were long overdue and it was so good to hear both of their voices and catch them up on things. I miss them both so much. Thank you, Fernanda, for taking such great care of Ronan for me. He LOVED having you here and is still talking about the things you two did. I am so lucky and blessed to have the amazing friends I do. I am thankful every second of the day for all of you. <3<3

I am really, really, really, excited for a few things that some amazing people are stepping up and doing for us. Not going to go into too many details but so many people have been coming out of the woodwork and wanting to help change PCH and the way things are done around here. They know who they are and they are just as passionate and excited as I am. All they needed was Ronan and his story to fuel the fire for making the world of Pediatric Cancer, a better place. I am so excited to be involved in this process with the vision and help of great friends. Ronan is changing the world already at the small age of 3… I can't wait to see what amazing things come of this. Thank you, my dear friends who shall remain nameless due to them being the kinds of people that don't want recognition, who just want to do amazing things when nobody is watching. I can't tell you how much I love this. There are not many people in the world who just do things without the whole world needing to know about it. I am going to have to come up with a nickname for this new friend of mine…. you know who you are<3 I will think of something after I get to know you a little bit better:) Maybe Mrs. Margarita due to your email tonight;) Love you, your passion, and your heart. Thank you, sweet girl.

The rest of today was spent playing with Ronan. We had a new nurse today that we haven’t ever had before. Imagine that! I thought we knew everyone on this floor. Her name is Holly and she was a delight. Ronan adores her and she was very sweet to us. We hope to have her again and also love the fact that she too is a former Sundevil:) The ASU baseball team came to visit the kids on the floor and I coaxed Ronan out of his room to go to the playroom to see them. I am so glad he agreed to go because he was able to meet some very special people and also get a couple of baseballs signed. Thanks Margaret for being extra sweet to Ronan. It was so nice to meet you today:) He was a little overwhelmed and a little shy but was very excited about the baseballs when we returned to his room.

I wasn’t going to ask to switch to a window room view while we were on the second floor….. because I thought we were going to be out of here by Saturday; but I did. If we are going to be here until next week; I will not survive without one. I feel like the biggest pain in the butt… as Dr. Maze said to me today, “What are we doing, playing musical rooms?” Made me laugh but that’s how it feels. What can I say, I’m a girl who knows how happy the little things make me and I’m not shy about asking for it. One of Ronan’s favorite things to do at night is to look out the window at the pretty neon lights that flash at the top of the new PCH hospital. He loves to say the colors out loud and we count the stars and say Goodnight to the moon.

Ronan is really missing his house and brothers tonight. He must have told me a dozen times how much he misses Liam and Quinn. It KILLS me to hear him say those words to me. I hate that he can’t be with them. He called tonight and talked to the boys’ for a while. I sat and while Quinn was on speaker phone and the boys’ went back and fourth telling each other how much they missed one another. It was heartbreaking and sweet all at the same time. After the phone call, Ronan and I spent the evening playing “lets throw the stuffed monkeys back and fourth to each other but not let them hit the ground due to the hot lava, game.” We played for a solid hour and he was laughing the entire time. We then went on a hut for our favorite nurse, Arica, and found her but she was in a room with a patient. She blew Ro kisses and came to visit us later tonight. Ronan was almost asleep but woke up as Arica was giving him kisses and loves, just so he could give her a smile and a giggle. I love that girl<3

Woody has been so busy this week that he hasn't been able to stop by the hospital to see us. Between his law firm and coaching the twins' two basketball leagues, he hasn't got a free second. Our catch ups have been consisting our our 3 minute phone conversations about 10 times a day. I HATE THIS. I miss my husband, my twins, my house, my old normal everyday life. I am tired of falling asleep listening to the screams and cries of our roommates and their parents. I'm tired of the lack of privacy and this sharing room bullshit. It's bad enough that my child has cancer, but it's even worse the lack of privacy that comes with it. I know, I know… the new hospital will have it's private rooms. That does me no good as of now. I'm burnt out, I'm discouraged by all the sadness that surrounds me everyday. Listening to the screams at night haunts me and is another huge reason to why I never sleep well. I know Transplant is going to be hard, but at least we get our own room. Trying so hard to find the positive in anything and everything I can.

That's all for tonight. I hear some Coconut Water and a movie calling my name. I could really use a Margarita and some freaking chips and salsa. What I wouldn’t give for that. I need to get lost in something tonight, otherwise I’m going to lose my freaking mind. Ahh… spoke too soon. My friend Stacy just texted me to ask if she could bring me anything. My reply was, 1) A margarita, 2) Some Sangria or 3) George Clooney. Can you guess what she is showing up with?!?! Either way, I win!! YAY FOR GOOD FRIENDS!!!! G’nite dear darlings. Sleep well.

xoxo

Kathryn~ Thank you for the Star Wars picture you sent for Ronan that Annie Leibovitz shot and signed for him. He is going to freak out over the picture; I am freaking out over the fact that such an amazing, talented soul, took the time to do such a sweet thing for Ronan! Made my day!! Tell her thank you as well:)

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo

The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .