I’m sorry my baby boy

 

Not a lot to report today. The day was spent with Ronan waking up bright and early in pain; therefore, he was pissed at the world. We spent the majority of the day playing in his bed and testing out what the correct dosage of morphine for him is as they decreased it last night due to his little falling asleep quickly incident. We did his second day of chemo, and third day of radiation and are still inpatient at Sloan. They are thinking we will be able to be discharged tomorrow and just do the rest of his chemo outpatient. I’m not sure how they will have us handle his pain issue though, as he is getting morphine through one of his broviac lines. We’ll discuss that tomorrow with Dr. Modak. Radiation was a little trickier today because Ronan was in the middle of sleeping when they came to take us down to the second floor. He was mad that he was woken up and crying when it was time for his radiation to start. I got him to settle down and our new friend, Con, who has been doing Ronan’s radiation since day one, started the procedure. It only took a few minutes again and soon we were back up in our room. Ronan fell asleep on our wheelchair ride up to our room and I transferred him into his bed.

While he was sleeping, I snuck out to go back to the RMH to shower, change, clean up our room, and re pack our bags. I had the chance to talk to Tricia on my walk back to Sloan. That felt good. I told her the highlight of my day was getting to shave my legs. Ahhh…. the little things now. They sure do mean a lot. Ro hadn’t napped long while I was gone and fell back asleep right before I returned. He woke up a little while ago and was in a lot of pain again. I called the nurse in and asked her to see if we could get his dose of morphine back up to what it was yesterday which was .3. The on call doctor came in to find a very unhappy boy, so she said that was fine. He is back asleep again and I am hoping he continues to sleep painlessly though the night.

I am beyond tired and am glad that tomorrow is Monday. I love having Woody here with me, but I think he needs a distraction from all that is going on. I’m so used to this hospital life; he really isn’t. Tomorrow will be good for him as he has a lot of work to catch up on. I’m kicking him out of here so he can go back to RMH to work. I will tackle Ronan and all that we have going on. I know that if I really need Woody, that he is only a few minutes away.

I am missing my friends and family back home a lot, but the time here with just the three of us has been good. It has given me some time with Woody that I have needed. We do really well in this city together. It is a special place for us; it is where he brought me for my 30th birthday and we had the best time. Lots of good memories together in this city. I know we are going to make more though all of this… once we get Ronan back on track we will take full advantage of being here and enjoying it with Ronan. We just need to get this pain under control. It’s the worst seeing him this way as I’m sure I’ve told you all a thousand times before. Just like I’ve told Ronan a thousand times since his diagnoses, how sorry I am. I found myself saying this over and over today as he cried about his little arm. I’m so sorry, Ro baby. I wish this were me and not you. I wish I could feel the pain in my arm, and not you. I feel it in my heart, every second of the day though. I am never without your pain and I wouldn’t have it any other way. I will hurt every second of the day with you until you are better.

That’s all for tonight my lovely friends. Thanks for checking in on us. Sweetest dreams.

xoxo

Jar of hearts

Tonight, I honestly sat here and could not remember what month it was. It literally took me opening up my calendar on my computer to figure it out. That is how fried my brain is. What even happened today?? I’ll have to sit back and reflect so that I can tell you. We were all tired from a rough night, so slept until around 10:30 East Coast time…. 7:30 your time. Seemed so late but it really wasn’t as we have not adjusted to the time change yet. Once Ronan was up, we spent the morning playing and I snuck out around 1 to go back to the Ronald McDonald House to shower and change clothes. I called Fernanda and had a hard time talking to her due to just having a hard couple of days. I hung up with her and ended up being hysterical so I called Auntie Karen as I really needed to hear her voice. I just could not stop crying this afternoon, no matter who I talked to. After I hung up with her, I decided that I needed to go on a run. I laced up my shoes, and headed to Central Park. I cried most of the way… WTF?? I cannot seem to hold it together when I am away from Ronan. I do well with him, but when I’m by myself, I seem to have a hard time. My run was alright, gorgeous day, but I only ran about 5 miles due to my pounding headache and lack of energy. I came back to the RMH, took the hottest shower possible, and somehow managed to throw a bag together to head back to Sloan. I ran to Starbucks before heading back to the hospital and caught a glimpse of myself in a window as I passed by it. I had to laugh out loud at the outfit I had dressed myself in. To say I looked like a cute hobo is pushing it…. I was a mess from head to toe and topped it off with my favorite bright green North Face fleece hat on top of my head. Seeing myself gave me a good chuckle which is something that I really needed at the time. I sat in Starbucks and waited for my coffee and called Tricia to check in…the conversation started by me telling her that this cannot all possibly be real, that I still don’t believe it, because no matter how wild of an imagination I have, even I couldn’t make up the crap we have been through the past few days. I ended up bawling while on the phone with her in front of a coffee shop full of people. I don’t even care anymore…. I don’t care how ridiculous I looked, the stares, the wondering on people’s faces. I love that in this city, full of so many people, that I can completely break down and it doesn’t phase me in the least. I’m not going to hide my tears here; I’m tired of hiding them back home due to being so worried about my twins seeing me or because I am so caught up in our everyday life that it numbs me. Here, I am not numb, and as painful as it is, it is therapeutic in a way as well.

I returned back to the hospital to a very happy baby boy who was sweet as pie. He was so happy to see me. Woody was in bed with him and they had been playing Star Wars. It was so adorable to come back to. Ronan was due to get his second round of radiation at 6 p.m. so I told Woody to go shower as I didn’t want to be alone for it again. He left and soon after Ronan got sick to his stomach due to the chemo. They are giving him round the clock anti-nausea meds, but that isn’t enough. I had them give him another dose of something else before we headed down to the second floor for his “pictures.” Woody arrived just in time and we headed down to get started. Once again, Ronan was a champ. I set him up on the table, and watched as they raised him up high to start his treatment. Woody and I both kissed him and said we would see him in a few minutes and we left the room. We watched him on the monitors and talked to him the entire time. I cried once again. It’s really hard for me to watch him do this. The whole thing took was super fast today and took only a few minutes. So glad for that and so thankful he is not needing sleepy meds to do this. It makes it so much easier.

After radiation, we came back to the room and Woody ran out to get pizza from Ro’s favorite place and soup for me. Ronan didn’t eat much due to still being a little sick to his stomach but I did get him to eat a few noodles. We had a little bit of a scare while we were sitting in our room. Ronan was on my lap, shooting his pistol gun, and I looked down and he had completely stopped what he was doing and he was out like a light. I tried for about 30 seconds to wake him up, but he was out cold. I flipped out, told Woody he had passed out and to call the nurse which he did. I got him to wake up and within seconds we had a few doctors and nurses in our room checking his blood pressure and heart rate; all which were fine. I’m not sure what happened.. I don’t think he passed out as in fainted, but passed out as in from exhaustion. I think it was a combo of not napping today, chemo, radiation, morphine and anti-nausea meds that hit him all at once. It scared me to say the least. He ended up being fine and woke up and played for the next hour. I asked the doctor to reduce the amount of morphine they are giving him as I think it is making him a little loopy. They decreased it and he seems to be sleeping peacefully.

Woody is out like a light as well. He is beyond beat and is having a hard time too. It’s hard for me to see him this way, as I am so used to him playing the strong, lawyer, perfect husband and daddy role. Tonight he told me he is scared, which I of course already knew, but hearing him say those words is really hard on me. I’m trying my best to keep my ass kicking attitude going here, but it is hard when I know Ronan is in so much pain. This radiation just has to work on his arm so he can go back to the kid with cancer, who doesn’t feel a thing. I want my “healthy” boy back so badly.

I talked to Quinn and Liam tonight to tell them goodnight. I miss them every second of the day. We all do. I talked to them in my strongest voice and told them how much I love them and missed them. They sounded happy which gives me peace. Thank you Mimi and Papa for taking such good care of them. Thank you Lindsey for the text you just sent me with a picture of the full moon tonight saying you love me to the moon and back. After you sent me that text, I got up out of bed just so I could go and look out the window at the same moon as you. I love you to the moon and back too.

Time to get some rest here. Kisses and love to you all. Hope you are having a beautiful weekend. Thanks for checking in on us.

xoxo

Us right after radiation. That’s my boy:)

Bravest boy in the world

We arrived to Sloan bright and early to start our plan for Ronan. Once again, you can never make a plan with all of this because as of now, our plan has changed. We headed back to Dr. Modak’s office and as soon as we walked in I looked at him and told him Ronan’s arm is worse and the pain is unbearable. I slowly pulled Ronan’s little arm out of his shirt to show Dr. Modak how swollen it looks now. He looked like he was going to be sick and was taken aback. This man is a doctor and to see the look on his face was upsetting to say the least. We talked with him and he decided we needed to hold off on the NK Cell trial and get Ronan’s pain under control. He sent us down for an X-ray as he was concerned Ronan may have a fracture due to how little he is using his arm. The X-ray came back and showed a lot of swelling, but no fracture. Dr. Modak told us what he felt like the best course of action was now which is to start radiating Ronan’s right shoulder today as well as admitting us to start him on his high dose chemotherapy. He said we could go home and do these things and Woody and I both said no way… we wanted to start ASAP. Dr. Modak made a few phone calls and now, we sit and wait to start Ronan’s radiation.

Woody looked at me in the waiting room with the tears welling up in his eyes. My turn to take over being strong for a while. I looked at him and I said, “What are you doing…. knock it off.” He just replied that he is upset because Ronan is in pain. I told him I was too, but that’s why we’re here now we’re not fucking around.  We’re not waiting until Monday, we’re not being put off, we are going to take care of this now so we can get back on track. We are in New York City for crying out loud and we are not wasting anymore time. I told you I feel strong in this city. Today I’m not sad. Today I am determined and strong. I know we are in the best place possible and Dr. Modak knows what is best. To say I love that man is an understatement; he is brilliant, smart, caring, and knows what is best for our son. Between him and Dr. Kushner; Ronan could not be in better hands. Knowing this gives me strength too.

After another grueling long day, we are finally settled in our room for the night. Today was a day full of dealing with a lot of Ronan’s emotions as he is beyond mad that we have to be at the hospital and not out romping the streets of NYC. We decided to check in until Sunday or Monday, so we could start Ronan’s high dose chemo tomorrow. Dr. Modak got us started on Ronan’s first session of radiation tonight. I cannot tell you how proud I am of my son. We went back to the room and Ronan was so upset and scared about the big table he was going to have to lay on. It took me 20 minutes with the 3 technicians ever so patiently waiting for me to get Ronan calmed down. He was so upset, and was crying and shaking. I sat and talked him through it, told him exactly what they were going to do, which was nothing scary at all… they were just going to take some pictures of him but everybody would have to leave the room, including me. He was not happy at all but after about 20 minutes, I got him to lay down into his little body mold that we had done earlier in the day. I looked at him in the eyes and told him how he could do this, without his sleepy medicine, and that I would be right back. He screamed for me as I left, but the techs strapped him down to protect him from falling and they came out of the room to start the radiation. I watched Ronan on 3 different cameras and I was able to talk to him the entire time on the speaker system. I watched as my baby held as still has he possibly could, his little lip quivering, being the bravest boy he could be. At one point I looked over at the Tech, tears streaming down my face, and told her this was beyond fucked up. Because it fucking was. It is probably one of the hardest things I’ve ever had to watch in my life. Not that the radiation was painful in any way…. because it is not. The whole scenario of watching Ro on a monitor, having radiation because the cancer is eating away at his little body was much too hard to handle. I did my best to continue to talk him though it and the whole thing took about 15 minutes; but if felt like a lifetime. Nobody could believe my little guy held so still, without anesthesia. Everybody was saying how amazing it was that a 3 and a half year old held so still, for so long. I could not have been more proud. After we returned to our room, Woody soon followed. He had missed the radiation part due to collecting our things at the Ronald McDonald House. He asked how it went and I quietly said fine, but soon ended up in his arms, crying like a baby. He held me tight for a few minutes and let me cry. Guess I’m not feeling as strong as I was earlier today. Sometimes my little badass attitude can even trick me into thinking I can handle this, no problem. I have decided I am only human and only can endure so much. Tonight in my husbands arms is just where I needed to be. We are so lucky to have each other.

Ronan will do 14 more days of radiation and start Ronan on a different high dose of chemo tomorrow as well which will be a 5 day treatment. Here we go again…. another little detour along the way to getting Ronan well. What else do you have for us world?? I’m trying my hardest, but this is getting beyond annoying. I just want my baby better already.

After talking to the Orthopedic doctors, they have found that Ronan has a Lytic Bone Lesion on his right shoulder. It basically means that the bone is becoming hollow. I am telling myself it sounds scarier than it is; which is true. It is something that can easily be fixed as Ronan is young and his bone will heal. It is going to take radiation to take care of the problem. Radiation is very effective in Neuroblastoma, so we have all the faith in the world. They want Ronan to be careful with his arm, so he does not end up with a fracture and say the radiation should make the pain disappear in a few days. Crossing all my fingers and toes. I cannot stand seeing him this way.

This is all the update I can do tonight as I am beyond tired, but wanted to take the time to let you all know what was going on. Please continue to send our little guy all your love and prayers. He needs them so badly. Sweet dreams, friends.

xoxo

I would like to say a big FUCK YOU CANCER for doing this to my beautiful baby boy. I hate you very, very, much.

Hello New York. We’ve missed you….

I don’t have days where I don’t feel like writing very often. If I miss a few days here and there, it’s usually because I am too busy, too tired, or just taking a little break. Today is honestly the first day where I don’t feel like writing; yet as I sit on this airplane while Ronan sleeps, I have too many thoughts filling my head and my mind refuses to be quiet. So, I’ll share. Today, is the first time that I feel like it may be too much but I started this blog and one of the promises I made to myself was to always be honest, no matter how painful it might be. Today stings. Today was a blur. Today does not seem real.

My morning started off with Ronan crying about his arm because he is in so much pain. He was actually up off and on all night and his pain medicine seemed to only help just a little. That led me to sending Dr. Maze a text telling him what was going on and asking him if he thought it was a good idea to call Dr. Eshun this morning to ask if we could bring Ro by the clinic to give him a dose of morphine before we got on the plane. He responded with a yes. I called the clinic, but it was too early and nobody was there yet so I was told to call back at 8:00 a.m. A few minutes later, Dr. Maze responded that he had called one of Ronan’s main nurses, “A” and that she would be calling me soon. He didn’t have to do that for me, but he did because he loves Ro and that is just the type of person he is. One who goes above and beyond. I was beyond a mess but was trying so hard to hold it together and waiting for the clinic to open up so I could speak to someone was more than I could handle. “A” called me about 15 minutes later and I had a lengthy conversation with her. We talked about what was going on, what she could do for me, and how we could go about getting it done to work with us leaving on a flight at 3. She wrote out a new, stronger pain medicine prescription for Ronan and my dear sweet friend, Melissa, drove down to PCH to pick it up for me, got it filled at the pharmacy and dropped it off to my house. “A” also decided that I should bring Ronan down to the clinic at noon so they could give him a dose of morphine to make him a little more comfortable for the flight. This all sounded like a good plan to me and it was one of the reasons I made it through today. Knowing Ronan is in so much pain is intolerable and if I have to numb him until we start this chemo, bring it on. I can’t stand seeing him hurt the way he is.

Tricia stopped by on her way to work for a very quick goodbye. As soon as she walked in the door, we embraced and both started bawling. We held each other for a few minutes and she gave me her best New York pep talk, but it didn’t really work. I felt as both of our hearts were smashed on the floor below us in a million pieces. Our goodbye was fast as that is the only way we could both handle it; anymore time spent together would have been too much for us and way too disastrous.

After Trish left, I was scrambling to get last minute things done. Fernanda came over to help me and cooked up a huge breakfast for the boys. I was in such a daze and she could tell as she kept trying to tell me things and I couldn’t hold a thought for a second. I tore through the last of the mail, finished packing our things, and made a few phone calls. Fernanda scattered around, cleaned up the kitchen, and helped keep Liam, Quinn, and Ronan occupied. Bethany stopped by next and brought her little Madden with her along with her to play with Ronan. She came with her arms full of groceries for me as I told her this morning, my fridge was empty and my poor boys were living off of the junk in the cupboards. I told her I needed fruit, veggies, meat and all things healthy or else I was going to lose my mind. She couldn’t have been happier to help and I am so thankful. Ronan was so excited to play with Madden and we all sat and watched the 4 boys run around, chasing each other with Nerf Guns and laughing away. I watched the look in both Bethany and Fernanda’s eyes today as we watched Ronan trying his best to keep up, all while keeping his right arm down at his side as he was trying not to use it. The look in their eyes alone was enough to kill someone. I tried my best to keep them both busy with tasks as well as myself because I knew if I didn’t we were all going to crumble to the floor and end up in a wet pile of tears. My dear Niki stopped by with her two little ones in the middle of all the chaos to say goodbye. Stacy stopped by as well. Soon I had a house full of friends, kids, and it was so beautiful…. for being so ugly. I kept thinking to myself, my house should not be full of kids running about, laughing, and my dear friends because Ronan has cancer and we are leaving for New York. It should have been because it was a gorgeous Spring Break day and nothing more. Fucking cancer.

Everyone left except Fernanda who held the fort down as I hopped in the shower and got ready to go. Danielle came over right as we were walking out the door to leave. I was so glad I as able to give her a hug and say goodbye. Mimi and Papa came over to stay with Liam and Quinn and Fernanda took Ronan and myself to the clinic to get his morphine. I knew once I got there it was game over. I took one look at “A” and the tears started and wouldn’t stop. Dr. Adams came over as well to say goodbye and gave me a couple big hugs and said some sweet words. Sharon also came over and held Ronan and told him she loved him. She hugged me to and told me everything was going to be alright and she loved me too. I left there still crying, holding on to Ronan’s hand as he looked up at me and told me he was sad too. I know he is sad and it is not just because I am… he knows what is going on and what is killing him the most is the same thing that is hurting the most for me; leaving his brothers behind. He has been crying on and off about it all day long and has been saying, “But, I’m never going to see my brothers.” He says these words over and over and it cuts like a knife. I just put on my bravest face, lie to him, and tell him of course he will, they will be coming to New York in a few days. Not true at all, but I think Ronan is young enough he is not sure how much time passes between seeing Liam and Quinn. He doesn’t fully understand the concept of a few days or a few months as it all seems the same to him. I hope anyway.

We finished up earlier than expected at the clinic so we ran over to American’s Taco Shop for some lunch. Fernanda hadn’t been there before and as little of a thing as it was, I felt good giving her something like taking her to my favorite spot to eat Mexican food. Now she can share it with her family and knowing that I introduced it to her, felt so good to me. So little and silly, but little and silly makes such a difference in my life now. We hurried and ate our food and headed to the airport. Woody met us there with Mimi, Papa, Liam and Quinn. Liam seemed alright with us going, it was Quinn who I watched be worried. He gave me his biggest, nervous smile and hugged and kissed me. The worst part was watching Ronan grab on to Quinn’s thigh and kiss it goodbye as it was the last thing he was clinging to. I turned around just in time to see there last embrace before we headed off to the plane. We checked our bags and got to the gate quickly and here we sit. Ronan is sitting in the middle of us and is sleeping soundly. So soundly that I was able to take one of his Oxycodone, break it in half, and slip it into his mouth. Ah, the joys of being able to medicate your child so he can’t feel his pain and it is a victory that he didn’t wake up to fight me on taking it. These are the things that I get to be thankful for now.

Woody. My Woody. My Woody who is so worried about Ronan’s arm that he was feeling it on the plane and is convinced that he can feel the cancer in it. My Woody who looked at me and told me he felt like dying. He then said to me, “Why don’t you?” My reply was, “I do.” I watched him push the tears away and then he grabbed my hand. We stayed that way for a while and he then too fell asleep. I just sat, stared at both of them, and cried. Today has been way too much for me. Sometime I am amazed at all of the tears I am able to cry as they seem to never end. I wonder if someday, I will have cried so many tears that my body will dry up like a cactus and there will be no more. I wonder these stupid things in my head all of the time because I now believe anything is possible because of what we are going through. The thing that I had never giving a second thought about because I thought it was impossible and we as a family, were invincible. Things like this don’t happen to good people like us, right.??? Wrong. So very, very, wrong.

Time to get this New York thing going. Time to get Ronan on the path he was meant to go on. Time to make the very best of New York and all that it has to offer. Time for this city to heal my heart again as it has done it before and it can do it again. Time to get him well so we can be one step closer to being back home for good where we belong. I know we can do this…. he can do this; he will beat this. I have no doubt that New York is the answer we have been looking for. I’ve always wanted to live here… so I will take this and make this as positive as an experience as possible. I’m tired of fighting this new life; I have no choice but to embrace it as much as possible. I will take all the sadness and find the happiness in it; even if that means finding happiness is in a run in Central Park or seeing my twins’ faces on Skype. I’m not going to let this break me, ruin me, ruin my family. I may keep getting pushed down, knees scraped and bloody…. but I will never stop getting back up no matter how bloody and bruised I get.

Thank you to all of my family and friends who have helped out so much. You all have no idea how much you mean to us. My words could never be enough to tell you how thankful we are. I feel like we have a little army of ants, whom just keep working away, never stopping, until they see us through to the end of this storm. When Ronan is cured of this awful disease, I hope you know that you will all be a part of the reason that he survived. Your love and support keeps me from digging a hole somewhere and never coming out; right Trish?? I love you all to the moon and back. Kisses from New York to all of you…. we will never forget how blessed we are to have the people surrounding us that do. Only the best of the best, and the truest of the true.

xoxo

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. <3 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

The hands that refuse to let go

 

 

After a Friday evening meltdown, a sea of tears from both my husband and myself, we somehow managed to pull it together and put on our happy faces for the weekend. Time to pick ourselves back up off the bathroom floor and together; we did. We spent Saturday doing things around the house with boys. Lot of quality time just enjoying being together. Later in the evening Woody ran the boys’ over to his parents house for a sleepover. The twins stayed the night, but Ronan just wanted to come home so of course, he let him. Woody and I had planned on having a date night, but it didn’t quite work out that way. I had plans for an early dinner to celebrate one of my best friends, Marisa’s birthday, but was planning on spending some time with Woody after. I met Trish, Marisa, and Danielle, at True Foods for a dinner out. I tried my best not to be a Debbie Downer, but there is not pretending around those 3. There is no need to pretend either which is why I love them so much. I sat outside alone before the girls arrived waiting for our table. All I could think to myself, was, look at all these shiny happy people…. everywhere. I wanted so badly to be one of them but could barely muster up the energy to come out of the zombie state I was in. Once Marisa arrived, we sat at the bar and both had an amazing Margarita together and caught up on some things. It felt so good to be with my little M. I miss her so much. Trish and Danielle arrived soon after and we sat down for dinner. It ended up being such a wonderful evening. We talked about everything. Somehow, those girls managed to take my sadness and wash it away for a couple of hours. I was so happy to be with them and celebrate another birthday with Marisa. We talked about how we will all be together when we are 60 doing the same thing and how life will have all worked out beautifully. I can’t wait to look back on everything we are going through and have survived it. All with the help of my beautiful friends. Luckiest girl ever.

When I returned home, Ronan was still awake but he was tired and ready for bed. I kissed Woody goodnight and crawled into be with my little bug. Although I was beyond exhausted, I tossed and turned the entire night. It was an awful nights sleep once again. Ronan woke up bright and early, so I got up with him and we let Woody sleep in. Our Sunday was spent spring cleaning. Or, in our case I’ll call it, “You’re moving to New York in 5 days so you’d better get your shit together.” Woody cleaned and organized the garage, I tackled the boys’ closets, drawers, toys, my closet, and everything else that needed to be done around here. I cannot go to New York without a clear head and having everything organized to a tee is the a good start to that. Ronan happily played around the house all day and waited for Liam and Quinn to come home. Woody and I were able to get a ton done which feels really nice even though my anxiety is though the roof. I went for  a fast 4 mile run this evening to try to burn off some of my nervous energy. Oh, and Trish, if you are reading this, totally forget to text you that I made it home safely and did not get eaten by a coyote on my dark run:) My run felt nice but didn’t do much for my nervous energy. I came home to a house of happy boys’ playing sweetly. I finished up all of the laundry and the rest of the little things that were left to do. Ronan is now curled up beside me and sound asleep. Woody and Quinny are playing video games and Liam is asleep in his bed. All is peaceful here. I love nights like this.

Liam and Quinn have Spring Break this week. Normally we would be going somewhere totally fun for vacation. Not this year. Makes me so very sad. We will spend the week at home and I will do my best to entertain and soak up my time with them as much as possible. Ronan has his clinic visit tomorrow and it will be his last one before we leave for New York. He told me tonight he is sad to leave everyone to go to New York and wants to know why Liam and Quinn can’t come. I hate that we have to leave them behind. I don’t know how I am going to do this when Thursday rolls around. It is going to be beyond hard to say goodbye to them for such a long period of time. We will have to set up our nightly Skype chats. Everybody seems to enjoy that.

So much to do this week. I am trying my best to be excited for New York because I know once we get there it is going to be great, just like our last long stay there in December. I didn’t even want to come back here at that time. It’s hard; my heart is torn because it feels like it belongs in both places. UGH. Don’t even get me started on leaving Tricia. That is going to be beyond brutal. I’m still trying to convince her to move to New York with me…. best idea ever:)

Goodnight dear friends. Hope you all had a beautiful weekend.

xoxo

The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

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!