Tag: pch

Here’s what I know about life. Nothing.

Ronan. You know what I know about life? Nothing. Except for almost 4 years, I took care of you almost every single day. And then from the time you were diagnosed from the time you passed away, I was so emerged in the fighting for your life world and all of a sudden it’s just gone. Just like that. And now I am expected to go back to “life.” How wrong is that? How does one do that? I don’t know. You know what I feel like? This came to me last night as I was waiting for the devil Ambien to kick in, because yes, I’m back to that for the moment. I feel like somebody has taken my body out to the Arctic Sea. I feel like I am constantly being dipped in and out of that freezing ocean. And just as soon as I am starting to defrost, I am dipped back in where my entire body is shocked to the core. In and out in and out. It’s a never-ending feeling of numbness and pain in which I have no control over. That’s the best way I can describe it tonight, anyway. Then I was thinking about the outside, non bereaved world. I’ll bet they think the pain of this is something like putting a your most favorite dog to sleep. Not because they love their kids any less, but because I think unless you are in this situation, although you may try to understand you cannot possibly have any idea of how much this truly hurts. Does that sound cold, insensitive, and harsh? I don’t mean to. I’m only trying my best to explain how deep this pain is, to the outside world. Of how I know how much they think they can understand this, but they cannot. And for that, I am glad. I wouldn’t wish this on anyone. I would never want somebody who has not gone though something like this, to truly be able to understand the pain that comes along with it. Not fully anyway. It is just too much.

This past week has been much harder than I had expected. I get that the holidays are around the corner and I keep hearing everyone talk about how hard they are going to be for us, but I’ve been doing my best just to get by. It’s only been these past few days that I have realized that I have no control over anything, no matter how strong I am trying to be. I’ve been crying non-stop. I am trying so hard to give Liam and Quinn a somewhat normal Christmas. I took them to Target and told them to pick out some things. I tried my best to put on my pretend mommy boots because they deserve to have a nice Christmas, whatever that means. But this year, when they were picking out a few things, I made them pick out some things for your friend here, Super Nate who is battling Neuroblastoma as well. They picked out a blue light saber that really lights up, a clone trooper bobble head, and your favorite, “guys helmet,” Captain Rex. I am trying my best to make sure they still get to be 8 years olds, having an 8-year-old Christmas, when all I want to do is strangle Santa and shoot the fucking elf on the shelfs head off with a machine gun.  I’ve had a talk with them about how hard this Christmas is going to be on all of us. I don’t know if what I am doing is right but all I know is I’m not going to hide the fact that this is our first Christmas without you and it fucking blows. I’ve told them this in a much nicer PG rating way though…… although I didn’t want to. I wanted to scream, kick, cuss and cry in front of them, but I didn’t. Somethings have to be done a little more gently with a little mama love thrown in. I’m running on empty but I gave it all I had. I hope it was enough.

I went to PCH I think on Wednesday or Thursday night. I can’t remember now. I went to see Nate and to give him his toys. I stayed a lot longer than I expected. He was so excited about the real light saber. I felt so blessed to be able to give it to him, from you. He let me play with him in his bed and he even let his mama slip out to take some things to her car and grab some food. I got to stay with him, alone. What a little doll. We played the funny monkey game on my iPhone but my favorite part was when I had him giggling up a storm by making his Storm Trooper bobble head eat some cheerios. His little laugh was priceless. He even let me kiss his bald head and said I could come back sometime to play. Just as I was walking out, I saw one of your favorites, playroom Kathy. She kidnapped me and I ended up staying another hour, just catching up with her. I saw some of your other favorite nurses, Kathy and Katie O. I cried when I saw them as I haven’t seen the two of them, since we were there getting your last round of chemo. I asked if you very favorite nurse, Arica was there but she was not. I told them to give her a hug for us anyway. It was nice to see them all but it made me super sad that you were not there with me. It turned into a full on party because Miss Elizabeth Blair ended up being on the floor as well, getting treatment. I got to give her a hug as well as her mommy and daddy. I left PCH feeling drained, but in a good way, I guess. I told your Mr. Sparkly Eyes that now going to a hospital to make a little boy smile feels so much better to me than sitting in a fancy restaurant, trying to enjoy something normal. Normal does not feel good. Normal does not exist. I would rather be off, doing something for someone else, than trying to pretend to live in a normal world where pretend normal dinners will never be the same. So, when I get a night out….. I would rather sit in a hospital with a bald-headed little boy than in a restaurant full of friendly faces. This is just the way it is now.

Being in our house has been really hard for me all week. Everything is making my skin crawl. Dr. Jo has been gone which I’m sure is part of the reason, I feel like I’m going to flip out. She has become my lifeline and the fact that I have not been able to see or talk to her, has been really difficult on me. Much harder on me than I thought it was going to be. I’ve been so tired from not sleeping well. I came home on Thursday and passed out for a little bit. Naps used to come so easily to me. To us. I fell asleep for about 15 minutes. It was restless and I dreamed of you, but in the worst way possible. I dreamed that I was watching you from your radiation table. You were looking at me in the eyes with such a look of trust because you knew that I was going to save you, because that is what I had promised. But than you died. I woke up to this nightmare only to find that it was indeed, my reality. It wasn’t a nightmare at all. I had dreamed the truth. So now for the past week sleep has become so painful and the days are too much to handle so I crawl into bed, begging to black out. This is where my frenemy, Ambien, has come back into play. I’m not happy about this at all. But sometimes, I need a break from everything. Including life.

I’ve been hiking and being active to try to calm down the never-ending screaming in my head. It’s not helping. I went up Camelback, late tonight, just like I’d said I’d never do again. I did. But this time, I was able to use my handy little flashlight app on my iPhone so I could see better. Thanks friends.

Ro baby. This is all for tonight. My brain is mush, my eyes are tired, and my heart is not fucking healing. I just want you back. Or I just want to be with you. I love you. I miss you. I hope you are safe.

xoxo

Soho and a Circus

Ro and I started off our morning the way we usually do. Cuddly and quiet. We sat and played in his bed and enjoyed our quiet time together. My mom came to the hospital with Tricia around 11. So happy to see my bestie. Ronan was not a happy camper at first, but he soon warmed up to Trish. It’s his whole I know my mommy is leaving thing that gets him into his little moods. I told him I was going home to shower and he agreed to let me. Thanks Sarg, as my New York Miss Macy likes to call him. I headed out the doors of Sloan with Trish and we went back to the RMH so I could shower and get ready for our few hours out. We figured out which Subway we needed to get on to get to SoHo… Woody  would have been SO proud. I am determined to master that thing by the time I leave here. We spent a few hours in Soho roaming the streets and had a bite to eat. It was so nice to catch up with my TT and to actually get to hear about things that are going on in her life. She is so concerned with mine that the phone conversations we have usually consist of what is going on with me and Ronan. I hate that. I hate that I feel like I am missing out on the little things that are going on with her, even if it is knowing what she is doing for lunch. I used to be so spoiled in that regard and would know what her entire day/night consisted of. I miss that so much. The simple things, the little things, the nothing is new because we talk 5 times a day about anything and everything and nothing. There is no more nothingness now as everything is wrapped up in this cancer cloud. The innocence has been lost forever in my life and I will never get it back. Neither will my best friend. But we keep holding on, telling each other that we will be stronger after all of this. Totally see a trip to Vietnam in our near future, TT 😉

After our Soho day out, we rushed back to RMH and I threw together my overnight bag so I could return to Sloan. My friend, Ed, emailed me a couple of weeks ago in regards to seeing a Broadway show. I told him about my mom and Trish coming into town and the next thing I knew we had tickets to “Billy Elliot.” Somebody he knows (a very kind person indeed) treated us to the show. THANK YOU, Ed’s friend:) I wasn’t able to go, due to Ro being in the hospital so I sent my mama, Trish, a woman, Barbra who runs this amazing organization called The Candlelighters in NYC, and a mom and daughter(who is 7 with cancer) to the show. They had an amazing time. It meant so much to me. This is my mom’s first trip to NYC and one of my wishes was for her to go to a show on Broadway. It should be something that everybody checks off their bucket list. It felt so great knowing that my mom was getting to do something that is so special to me; she deserves it so much. Thank you, Ed for organizing this. Thank you, Barbra, for taking such good care of my mom and Trish. They loved you and I cannot wait to spend more time with you. What you do for other cancer families is simply amazing.

I spent the night here with Ronan doing our usual thing. We made slime with the Childlife guys, played more Star Wars and I fed him dinner. We had a very special visit with my dear friend, Niki. It was comical and sad all at the same time. Niki, who is here with both of her young children put them in a cab and came to Sloan with cupcakes and dinner for us. I told Ronan that they were coming by and asked if I could go out to the elevators on our floor to say hi and grab our food. He said yes but was upset they couldn’t come in our room to see us. I left him in his bed and ran out to see Niki and the kids. I was greeted by the best giggles, smiles, hugs, and tears in the world. It was so nice to have my friend wrap her arms around me and hug me the way she does. She gives great hugs. I chatted with them for a few minutes then decided to go back and see if Ronan would come out to say hello. He agreed so I picked him up, and wheeled his “asspole,” out to the floor of our room. As I was wheeling it down the hall I was suddenly hit with a moment of panic wondering how Laely and Wesley would react to Ronan’s pole and the tubes coming out of his little body. My panic almost stopped me in my tracks but I then remembered feeling the same way over Laely seeing Ronan’s bald head for the first time and the conversation I had with Niki about it and how Laely didn’t even notice. To her, she was just seeing her friend, Ronan. She doesn’t get that he has cancer (they are the same age) she’s not scared of him… to her, he is the same little boy as always. The world is exactly as it should be in her eyes. Seeing those 3 kids tonight was the best medicine in the world. This is how our world works now, and we have to make the best of it. So tonight, Ronan got to see his friends through the glass doors of our floor as they could not come in and we could not go out. I held Ronan and watched as Laely and Wesley smushed their faces up to the doors and I got down on the ground and kissed them through the glass. We laughed, played, and loved. It was the best 10 minutes Ronan’s had in a very long time. Made both of our nights and we all parted way smiling.

Ronan and I then came back to our room to prepare for our nightly walk. Tonight though, he insisted we take all 4 of his guns with him and the very special balloons that were delivered to him from Dr. Maze today. I tried to talk him out of him out of taking the balloons with us, but he went into complete meltdown mode. (Thank you, Aubrey… you would have loved the smile those balloons got you:))) Ronan wins. I tied the bundle of the biggest, cutest, animal balloons in the world, onto his pole and I somehow managed to walk the halls with him for 30 minutes without breaking my neck. I couldn’t see a thing and everybody kept saying we looked like a circus. We got a lot of laughs tonight and went on a very special mission to try to find our nurse, Jen, who was hiding from us on the floor. She would jump out at random places and Ronan would blast her with 2 of the 4 guns that he made me carry. Very entertaining night around here. I swear, I’ll do anything to hear Ronan laugh these days.

After our walk, Ro was worn out so we came back to his room and snuggled in his bed. He kept telling me how much he loved me and we sang our nightly “Twinkle Twinkle Little Star,” together and he soon drifted off to sleep. I am listening to his little breaths as I sit beside him and write this. It’s my favorite part of the night, watching him sleep. We’ve been in the hospital for 3 weeks now, 21 days, 504 hours…. this is complete insanity and unfairness. I would give anything for this to all go away. I would give anything to be at home with my family, where I belong, taking care of my Liam who had to stay home from school today because he is sick with the flu. I would give anything to be the normal mom again. Except this time, I wouldn’t whine about my child throwing up all day due to the flu. I would be SO VERY THANKFUL. I cannot wait for the day that Ronan is well and this happens to me. One of my kids gets sick with only an ear infection, a cold, or the flu. It will be one of the best days of my life.

While I was sitting here writing tonight, I got an email from my friend, Jon who is cousins with the little girl, Phoebe I talk about sometimes on here. She was Ronan’s last roommate at Sloan and I just had lunch with her mom the other day. Jon came to visit us a couple of weeks ago before he took the train to visit Phoebe and her family. Love him.  I’ve been feeling pretty strong these past few days but a paragraph into Jon’s email and I was bawling like a baby. Not because I was sad, but because the things he wrote to me hit such a nerve. His words were filled with such truth and light and it was as if a little light bulb went off in my head. “DINGDINGDINGDING!!!!” I am doing this. Woody is doing this. Ronan is doing this. Phoebe is doing this.  We are all doing this and we are all going to get through this. We are too strong not to, Ronan is not going to let this cancer crap win and neither am I. Jonathon, somebody who did not know us at all, knew this after only spending a few days with us; just like the way I knew it about Phoebe within a few minutest of meeting her. She had this look in her eyes and I just knew she was going to come out the other side of this only more beautiful than ever. The same look that I see every time I look into those baby blues of Ronan’s. Fuck the statistics and fuck the odds. I refuse to listen to them because they have nothing to do with Ronan.

I’m ending my writing tonight with  Jonathon’s email (with his blessing) because his words are raw and real and give me strength. I love you and your beautiful family so much. Thank you for this gift tonight, my friend.

Goodnight to you all, my lovely souls. Thank you for all of your kind words, thoughts, prayers, support and love. But most of all, thank you for BELIEVING.

xoxo

Maya,

This is a quick note, not meritorious of a response. I’m writing tell you that you are a fucking badass. I’ve attempted to think of other ways to write this, less vulgar, more poetic, but fuck that.
I met a lot of folks at Sloan, visiting Phoebe for 6 months, or 8 months, or 10 months, or whatever the hell it was. And I worry about her every day, still. But the point of this note is to tell you that I knew you and Ro for only 4 days, and I saw that you were tired, and pushed against a wall, and still, more than anyone else I’d met, I knew in your eyes that you’d already won.
This was easy to see. I saw your resilience.
I don’t know anything about life. You called me out as a young fool, and you’re right, I know jack shit.
But I saw you, and Ro, your chests held high, and your smiles wide, and I felt your presence. Through those hideous turquoise plastic-felt curtains they threw between us, I felt your laughter, and your brilliant fuck-all attitude regarding the drivel we go through.
So this is one STRONG vote, from a kid in Chicago, saying laugh at their shit. Laugh at the crappy cots, and laugh at the exuberant candy-stripers, and laugh at the folks with FAKE smiles, because, let’s be frank, this is some bullshit. But that’s okay. Bullshit is bullshit is bullshit, and when I saw you, and Ro, and Woody, I saw the people I’d stake my livelihood on. I saw people I’d lay down in front of a train for.
Thanks for making me proud. Next time you feel that it’s too much, don’t worry. Just know that you’re already the most badass person I’ve ever met. You can do anything.
With love,

Jon

Sparkly stars in the sky and all the one’s right before my very eyes

These are the kind of friends I have. The kind who come over to your house in the morning, bring you coffee, insist that you give them your car keys so they can go wash and put gas in your car. Not to mention pick up your prescriptions, some pictures you had developed, all while you put up a fight in which they were not having. The kind of friends whom stop by, bringing their sweet little boy with them to play with Ronan and insist on you giving them a list. The new friend, whom you have never met before, but is dying to be a part of our lives because she and her family have been so deeply touched. The friend whom lets me drop my crew off to play with her crew while I went to my therapist. The friend who let me rant and rave all while agreeing with me that this is bullshit, and she knows because she has lived through it. The friend who drops off boxes on your doorstep so you can try to pack up your life and send it to New York. This all happened today; these amazing woman helped me though today without me even having to ask. I don’t know how I got so lucky. Thank you, Melissa, Gay, Tiffany, Pam, Stacy and Bethany. You all will really not let me fall, no matter how hard I try.
Today was busy indeed. I had a mild meltdown on the way to see “The Good Doctor.” A panic attack, an almost nervous breakdown… I had to call Marisa on my way so she could rationalize everything for me. I don’t know how I made it to my appointment without getting in a wreck. But I did. The good doctor took one look at me and knew I what a mess I was. We went over my prescriptions, the doses, and we had a short but productive talk. I felt a little better after leaving there, but my nerves were shot. I am doing my best but this week has been especially hard. I have been trying my hardest to enjoy my time with Liam, Quinn, and Ronan but the littlest things put me on edge now. Any little argument between my boys is enough to make me want to lock myself up in an insane asylum. My patience is worn thin and I have the patience of a saint. I am struggling with trying to be a normal mom…. whatever that may be. I just want to be the mom I was before all of this but is is so hard.
Woody came home and I slipped out for an hour to meet a friend for dinner. Just what the doctor ordered. We sat outside, ate good food, and the weight of the world seemed lifted off of my shoulders for the hour that I was there. I found myself laughing, enjoying our conversation, and it was just very easy, as it always is. The stars were shining so brightly tonight, I kept looking up to see if I could see a shooting star to make a wish on. I then decided I didn’t need a star, because one of the most beautiful stars was sitting right before me. I made a wish on my friend, the same wish I make 50 times a day. It made me smile. I came home feeling much better about things. It’s funny how certain people just bring out the old me, the funny me, the happy me. The me that is buried so deep down, but when she comes out I so enjoy being her. Tonight was something I very much-needed. An hour of pure bliss and happiness.
Ronan is still in a lot of pain. It’s absolutely killing me as there is nothing I can do. I mostly sit and try to comfort him, get him to take his pain medication, and try not to throw up at the thought of him hurting so badly. I sit back and wonder what it feels like for his little arm to hurt so much. Does it feel broken? Does it burn? Does it throb? However badly it is hurting, I know it is intense. He never complains about a thing and watching him with this is like daggers in my heart. I cannot wait to get him started on Monday for his next round of chemo. I never in my life would have thought I’d be so happy about getting back on his magic medicine but I cannot stand to see the pain he is in. He needs it badly.
New York is going to be good. And I am going to be good once I get there. It is my Ro baby’s city that is going to heal him; I just know it. We are going to get there, get into our routine, and get him better. I know he is going to respond well to his treatments; I have all the faith in the world. New York really is a magical place and I honestly feel that energy when we are there. We always do so well and we can do this. We will do this while refusing to let go of the rope we are holding on so tightly to. We are just going to keep tying knot after knot so we can keep hanging on. We are never letting go of our rope and I am never going to let Ronan slip and fall. I will hold on to him for the rest of my life and I will be thankful for every second of it. I never knew how precious life really was until all of this. It all seemed so trivial to me…. just another day in the life of Maya Thompson. Now I know how precious our time here on earth really is because I am watching my 3 year old fight for it every second of the day. It is so wrong, so sad, but so inspiring. Ronan has made me realize that my time here is meant to change the way certain things in the world work. He is laying out a path for me and I am not sure where it is going yet…. but I am going to keep following it until I figure it out. I love him so much. My sweet little seal.
Tomorrow, we have the clinic visit for blood and possibly platelets. We will say our final goodbye’s for now, but not forever. We will be back to see our angels at PCH soon. Ronan will be back and feeling much better:) Cannot wait for that day. Fernanda is going to come to the clinic with me to work on some things. I.LOVE.HER. so much. I swear she could rule the world. Beautiful people everywhere and I never even knew it. Thank you to all of you who are keeping up with Ro and his journey. We are so thankful for the love you send his way. Someday, when this is all over and Ronan is well, we will have a big party and all 264,578 whom are reading this are invited:) Wouldn’t that be amazing?? I am totally going to get Eddie Vedder to throw a Charity Concert for Ronan. Or Tom Petty. Or Neil Young. Or all of them combined. How awesome would that be?  Mark my words. Done and done.
Goodnight to my dear friends, old and new. ❤ Goodnight to each and every one of you. Love and blessings to you all!!!!
xoxo

This is what I wish

 

I wish that I could sleep the entire night without waking up 50 times. I wish that my baby wouldn’t wake up as early in the morning because is little arm is hurting so badly. I wish this was me and not him. I wish that there was a known cure for this disease. I wish that I didn’t make my best friend cry yesterday because she was so worried about me. I wish I could take my twins, friends, and family all to New York. I wish Ronan did not have cancer.I wish my husband never doubted how much I love him. I wish Ronan’s cancer was going away. I wish no parent ever had to endure this kind of pain. I wish for my old life back. These are the things I wish for everyday of my life.

Yesterday, I took Ronan and Quinn to the clinic. We saw “A” and Ronan said his goodbyes. We had a picture day with all of his favorite people…. Sharon, Dr. Maze, and “A.” Turns out, we have to go back on Wednesday but we won’t get to see “A” or Sharon again, but we are hoping to see Kristen, Patty, Dr. Adams, and Elaine so we can tell them goodbye since we didn’t get to yesterday. I talked to “A” forever about Ronan’s arm pain. She told me she is almost positive that it is disease related. The only thing that is going to help is getting his next round of high dose chemo going on the 21st. I hate that there is nothing we can do until then. I can get him to take pain medicine if he is really hurting, but he hates taking it and puts up a good fight about it. The stubborn little guy would rather suffer. After the clinic, I dropped the boys’ off at the movies with Sarah so I could get some things done. Fernanda ended up picking me up for what I intended to be a productive work lunch… brought my laptop and all. Due to technically difficulties… The Vig’s internet wasn’t working so I am blaming that on our lunch gone array. We got nothing done except for a very long, deep, heart to heart talk filled with both laughs and tears. I don’t know how I am going to get through New York with her so far away. She gives me such strength.

The night around here was alright. I am having a hard time staying focused on what I need to do before we leave. Avoiding reality big time. I have no choice but to be productive today as Thursday is right around the corner. I finally talked to my long lost Charisma last night. We have not talked in a month but were finally able to last night. It was so good to hear her voice and listen to how she has been working away and testing for pilot season. Keeping my fingers crossed for my extra talented friend that something amazing comes her way.

I have been up on and off since 3….I was finally able to get Ronan back asleep a while ago and he is still sleeping away. I have been watching him on and off all night as he is fighting this pain so hard. It is gut wrenching to see him toss and turn and wince in pain as he tries to sleep. Poor angel baby. I feel so helpless and restless. It will be good to get to New York and get the ball rolling.

I hope you all have a beautiful day and are so very thankful for all that you have.

xoxo

Never-ending tears

How much can one little person endure? It’s amazing because the strength of Ronan seems endless. All he has gone through so far… all he is going to have to go through still. I am exhausted just thinking about it. He is back getting his bone marrow aspirates done and MIBG scan as well. I didn’t tell him until we arrived here what was going on. He cried and said he did not want his sleepy medicine unless Dr. Maze gave it to him. I knew he was going to be upset about that. He was more than upset. He  threw himself on the floor while the tears poured down his cheeks. I told him we could call Dr. Maze and he could talk to him if that would make him feel better. He finally calmed down after that and we made the phone call. Nevermind the fact that it was 6:30 in the morning back at home. I put Ronan on the phone and watched his little face as Aubrey talked to him. It lit up and he kept saying o.k. and nodding his head. He then told him, “I love you,” and handed the phone over to me. I have no idea what was said to Ronan, but it worked for the time being and calmed him down. We were soon called back to the procedure room and I was able to hold Ronan as the doctor put him to sleep. I left the room freaking crying. Time to get used to all new doctors, people, nurses, etc….. We are so attached to our angels at PCH. I already miss Sharon, Kristen, Dr. Maze, Erica, Dr. Adams, Dr. Eshun, Elaine, Patty, and “A,” so much. They have been our family for 7 months now and here we are starting all over. I didn’t think it was going to hit me so hard, but today it did. Especially leaving Ronan in the anesthesia room with some new doctor whom I’m sure I’ll never see again. Don’t get me wrong, Sloan is beyond amazing. But this is going to take some getting used to.

Lovely. Lovely that I am a blubbering mess today. Lovely that as soon as I was called back to see one of Ronan’s main doctors, Dr. Modak, to sign papers for blood work that I immediately starting bawling. Lovely him took my hand and said “Tell me what’s wrong.” I couldn’t even get the words out because everything is wrong. I just told him I was worried about this arm pain of Ronan’s. He pulled up the latest  MIBG scan for me immediately and we looked at it together. I’m sorry, but nobody at PCH would have done that for me. As much as I love them, the fact that Dr. Modak was able to pull up the scan in 2 minutes and discuss it with me was something that would have never happened so quickly at PCH. And it should be that way. It should be that way everywhere. I should not have to wait days for results. We went over the new scan and he showed me that nothing has progressed. If anything, it looks slightly better. I was able to stop crying for the rest of the time while I was in his office. At least I can have that peace of mind for the moment. I was sent down to the blood donor room to have my veins looked. I made it halfway there before I started bawling again. The nurses kept offering me orange juice to calm me down. Made me laugh to say the least.

My friend, Ed, is in the city today and should be here any minute. There is no way I am going to be able to hold it together for him. He lost his little boy Jack to Neuroblastoma a few years ago. He and his wife have been so supportive of all of this even though we hardly know them. They are 110% behind our Sloan decision which makes me feel very good and just confirms that we did indeed make the right decision. I only was able to see Ed for a few minutes due to Ronan waking up from anesthesia as soon as he arrived. He woke up grumpy like always and wanted to just go back to the hotel. I grabbed the Starbucks Ed brought me and he helped me with the stroller downstairs until I was able to calm Ronan down enough to put him in it. What a sweetheart. We were planning on going to lunch but Ro baby was not having it. Ed grabbed a cab and we headed back to our room. I tried to get Ronan to rest a little bit but he was hell bent on going to FAO Schwartz. I bundled him up, threw him in the jogging stroller and ran up to FAO. We stayed for about an hour. He was tired and is in a lot of pain from his bone marrow aspirates that he had done today. He keeps asking why they put needles in his body. UGH. He is hurting tonight which kills me. I hate seeing him in pain and I know it’s bad because he never complains. After FAO, we ran back to our “hood” and went and grabbed our favorite pizza. He ate a lot as always and now we are back in our room. It is freezing out there and I am so exhausted today I swear I could fall asleep right now. It will be an early night for sure.

Woody is flying out tonight to NYC because Dr. Modak needs his blood by tomorrow. Nobody in Phoenix can send his blood that quickly so he is just flying in. Ronan has a CT scan at 11:30 tomorrow and we will fly home with Woody tomorrow evening. I hate to admit this; because I like to act like I’m such a tough ass and have everything under control; but……. these 3 days without Woody have been SO hard. I sometimes take for granted how helpful he is to me but I swear, never again. I could NEVER survive this without him. I miss him terribly and I am so insanely blessed to have him as a husband. He truly is the best thing to ever happen to me.

That’s all for tonight. An early update because I hear a hot shower and a very early bedtime calling my name. So thankful that todays MIBG scan showed no progressive disease. Maybe I will sleep a bit better tonight. I am anxious to get home, I feel like I’ve been gone a year.

xoxo, sweet friends.

P.S. Biggest HAPPY BIRTHDAY loves to my New York Miss Macy. This city is not even close to being the same without you:( Miss you so much. Kisses from NYC!

Magic Medicine, Day 3 Round 4

Headphones on: check. Music blaring: check. Baby sleeping: check. Tears out of the way for today: check. Today, was overall a good day. Ronan slept in until 9 which is very unusual, but he had a rough night. From about 2-4 he was up and throwing a tantrum. He kept throwing himself on the cold floor, insisting he was hot, and he was mad that he was “hooked up” to all of his medicine. He would not let me touch him, hold him, and kept screaming for me to leave. Finally, he fell back asleep. Mimi and Papa came around 9:30 so I could run home and sleep/shower. The sleep part never happened, but it felt nice to be home for a while. I also got to see Liam and Quinn for about 5 minutes which was a treat. I miss my boys. I came back to PCH and played the rest of the afternoon/evening with Ronan. Trish came by to bring me a coffee and say hello. Ronan was not happy to have her here at first. By the time she left though, he was yelling to her as she walked out the door, “Love you! Thanks for coming! See ya later, alligator!” It was the cutest thing. The “thanks for coming” part melted my heart. The nurses were all cracking up standing outside the door listening to him say his goodbyes. He doesn’t talk much around here, so they got a big kick out of hearing him yell all of those things to Trish. I was going to take Ronan downstairs to meet Mimi as she was dropping off some things to us. I asked the nurse to make sure it was o.k. and I got a big fat NO. Apparently, if you are hooked up to chemo, you have to stay on your floor and I guess they have gotten pretty strict about enforcing those rules. As soon as I told Ronan he couldn’t go downstairs with me, it was meltdown city. We were in the hallway and he started screaming, hitting, and crying. I had about 5 nurses run out to see what the commotion was. This lasted about 20 minutes and finally he calmed down and fell asleep in my arms. His little meltdowns always make me cry. I hate that he does not have the words to express what he is feeling.

New York is right around the corner. I’m anxious to get it out of the way. I am excited to go… I couldn’t think of a better place to spend a month, even if it is under the circumstances we are dealing with. I have the best friends and family who will be flying out to help me out and to give me a break. I cannot wait to meet Dr. Kusher and La Qualia…just to be in the presence of such amazing Doctors makes me feel so thankful that we are fortunate enough to have Ronan in the best hands.

I am hoping that Ronan stays asleep tonight for the rest of the night. We were told today that we will be able to go home tomorrow around 9:00 p.m. Yay for that. We will start Round 5, November 22. I can’t believe how all of this is flying right by. Please keep a special little girl in your prayers tonight. Her name is Mia. A few weeks ago, Auntie Karen and I were walking Ronan around downstairs, and a man chased us down and asked if this was Ronan. He said he recognized him from my blog that he follows. His little girl, Mia, is here now completing another brain surgery. I spoke with her mom on the phone tonight and it sounds like everything went well. She needs lots of prayers and love send her way too. So many kids do. Our roommate, who I will just call, S, went home today. I missed it and I am so sad that I didn’t get to say goodbye. Mimi was here and told me that the dad was anything but nice. After listening to the way the dad was talking to his son (who he hasn’t seen in over a week) Mim went over and told the dad how proud he should be of his little boy, how polite and well-mannered he was. The dad replied with some snarky comment about how he doesn’t seen that side of him. UGH. I would like to punch that guy in the face. That little boy could not have been any sweeter. It makes me sick to think that he dad does not appreciate how amazing of a little guy he has. The poor kid has been here alone the entire time and never once complained about a thing. I am going to keep him in my prayers for the rest of my life. We have a new roommate now. He is 19 and seems really nice. He is quiet which is always a bonus.

My sweet Charisma rocking a Rockstar Ronan bracelet. And seriously, could she be any more gorgeous? Love her. Email us at rockstarronan@gmail.com if you want one. They are 5 bucks. She is wearing the “nice” one which says, “Rockstar Ronan” “Our little hero”…. I also have a “naughty” version which says something not so nice about cancer….”F*cK You Cancer.” I rock the not so nice version. Alright.. seriously going to try my best to get some rest now, while Ronan is resting. Whooohoooo for almost being done with Round 4! Only 2 more rounds of chemo to go!!!! Goodnight to all of you beautiful people out there. Please spread the word about Ronan and childhood cancer in general. Together, we can make a difference!

P.S. 96,874…. as of today… this is the number of blog views I’ve had. AMAZING! I am stunned that so many people are taking the time to read Ronan’s story. Thank you to each and every one of you! xoxo

Magic Medicine… Day 2, Round 4

That stupid pit is back in my stomach today. It is the worst feeling. Makes me not want to eat, not want to sleep…. it’s like a dull, empty pain that comes and goes. And when it is here, it is a constant reminder of what we are up against. Before all of this, I didn’t even know what an Oncologist was. Yup, I was that naive. I thought the last thing we were going to hear is your child has cancer. I still think this is some kind of a sick joke. But staring at my baby’s bald head, as he peacefully sleeps… I am reminded that it is not. And it is more painful than anything I’ve ever felt in my life. When I was driving back to PCH today, after running home to shower and take a power nap… I thought to myself, how in the world can I ever go back to a normal life? A life before all of this? In a weird and twisted way, I have come to love our new life. It is a new life full of getting Ronan well and keeping him alive. He is still here. He is still alive. He is still mine. I am so thankful for that. I remember at the beginning of all of this, when we were talking to one of the doctors here about treatment options…. he told us that if we wanted to take Ronan home, to let him be at peace and not do any of the treatments, that they wouldn’t fight us about it. His words still haunt me….how in the world could that have even been an option?? To give up on your baby and not do everything in your power to help him fight though this…I can’t even imagine. I am very thankful we caught this when we did. A month or two later… and it could have been too late. We are going to do everything we possibly can to get him well… I have no doubt that what we are doing will work.

Ronan has his chemo running through him for 72 hours straight. It is a little clear bag, full of some orange fluid. He is sleeping now, but seems to be tolerating it pretty well so far. My little fighter. Woody and I met with Dr. Eshun today to go over our plan with him for NYC. We are working getting all of the dates finalized and set. No matter what the case, my stomach always goes into knots when we have to meet with a doctor. Guess it just goes with the territory though and I need to learn to get used to it. This is not going away any time soon.

The little boy who we are sharing the room with is still alone. I hear him talking to his mom on the phone every once in a while. He just called her to ask if she was o.k…. he wants to know what she is watching on T.V. and wants to know if his dad is asleep. He sounds so happy just to even talk to his mom on the phone. I could just eat him up.We’ve been with him since yesterday around 4… and no parents have been here. Not even during the night. I cry for him. He is the sweetest little thing and he doesn’t make a peep. I want to bring him all sorts of toys and things to play with. He never asks for a thing… even after the dozen times that I have asked him if he needs anything. Sweet kid. Shitty situation. Life really is not fair sometimes.

Last night I slept about 3 hours. Better than nothing. I am paying for it tonight though… very tired. No matter how tired I am, I never sleep well here. Too many people coming in and out, too many beeping noises, too cold, etc….. It’s fine though… I could stare at Ronan all night long and never tire of it.

Before I try to get some rest I wanted to say a big thank you to The Academy House in my hometown for putting on a wonderful fundraiser in Ronan’s name. I am floored by all the people who showed up, all of the money raised, and the beautiful spirits of the young kids who worked so very hard to raise awareness for Ro’s cancer. Also, a big hug to Lisa for organizing everything and being the force behind it. The love and support from my hometown has been amazing and I am so thankful and proud to be a Longview/Kelso girl.

Sweet dreams to you all out there. Thank you for loving us, believing in us, and fighting for us. I’ve said it before, but I’ll say it again… I will never forget the love you all have shown us and I will forever be changed because of each and every one of you. G’nite<3<3<3

And P.S. Gay, I love you and your messages. Thank you for checking on me… sorry for not calling you back… will call you tomorrow. And you and your guys’ are NEVER too much for us. That was the best Halloween ever. Thank you for sharing it with us… we adore you all and are so lucky to have you in our lives.