What else do you have for us, world???

I’ve done so well these past few days. Enjoying Ronan feeling better, enjoying Quinn, enjoying Woody, just living life being so thankful for what we have in the here and now…. trying not to worry about the future or what tomorrow may hold. Living in the present, in the moment, and nowhere else. It’s days like today that I am overcome with sadness. It’s days like today where the tears won’t stop. Some days, it’s too much for me to watch Ronan hurt. His screams and tears become unbearable. His suffering rips my heart out to the core. Yesterday, while our nurse, Julia, was flushing one of Ronan’s Broviac lines, it broke. Which means it has become too weak from too much wear and tear, which is not uncommon. She quickly clamped it off and called in another nurse to call the “Green Team,” which is the code name for Dr. La Quaglia and his helpers. He came to see us and decided that Ronan needed a new access system put in. They decided to put in a temporary line for now and in a few weeks Ro will either get another Broviac or a Mediport. Regardless, Ronan had to be put under anesthesia today and Dr. La Quaglia took out the Broviac on the right side of his chest and put in a new, temporary line in the left side of his chest. Ronan woke up pissed…. more so than normal. We went back to our room and soon an escort came to take us downstairs to floor 2 for an x-ray to make sure his line was properly placed. I could not get Ronan calmed down. The new temporary line was all bloody and he kept trying to rip it out. He screamed and cried for a good hour while I held him and let him hit me and listened to him tell me he hates me. He was screaming that his new port hurt and he wanted it out. There was nothing I could do but sit, hold him, and try my best to calm him down. I had Woody call a doctor and nurse down to come and  look at his new line, as the blood was worrying me. Soon they took us back for his X-ray and I sat him on the table while he was still screaming and saying it burned. The technician let me stay in the room and somehow I actually managed to get him to hold still for the picture. I was bawling the entire time. After his x-rays, a doctor and a couple of nurses came in to make sure there was nothing out of the ordinary going on. The blood had stopped and they changed the dressing and cleaned him up. I asked the doctor all the usual questions…. if this was normal, why is there so much blood, why is he is so much pain, etc. They explained everything to me and ended up making me feel better. By this time, Ronan was exhausted and as they wheeled us back up to the 9th floor, he had finally calmed down and he gave in and let his little limp body rest on me. I held him tight, rubbed his back as we were wheeled into an elevator full of people. An elevator full of people whose eyes were on us the entire time as I sat and let the tears pour down my cheeks because I don’t care and I cannot stop them today. Today, has not been a good day. Watching Ronan and all he is having to go through becomes unbearable at times…. no matter how strong I am trying to be. We are not getting out of here anytime soon. Woody thinks maybe Monday. This chemo has done a number on his ANC counts and has wiped him out. I’m sad for Quinn who only wants to be with Ronan and vise versa. The main reason for keeping Quinn here was to spend time with Ro and that has hardly happened. He asks me 10 times a day when Ronan can be released from the hospital. I am going to be heartbroken if it is not until Monday and Quinn has to go back to Phoenix without spending much time with Ro. So not fair.

Ronan is sleeping now and they have him hooked up to a morphine drip to help with the pain of his new line. I hope he wakes up not so upset about the new foreign object in his body. He has every right to be upset, mad, scared, confused. None of this makes any sense to him and I don’t blame him for being angry at the world. I am trying my hardest to be so very strong for him and to explain all of this to him in a way that makes a little sense to his young mind. It is all I can do today to not crawl up in a corner somewhere as I feel so tired and sad. I miss my support system back at home so much. They give me so much strength and love and not being surrounded by our dear friends and family has been harder than I expected.

Alright my sweethearts. This is all the update I can muster up the energy for today. Lots of love to you always. Thanks for checking on us and also a big thank you for all the people who have responded to donating blood and platelets. Means the WORLD to me. THANK YOU THANK YOU THANK YOU. I love you all so very much.

xoxo

The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street

Simple and Sweet

Last night we had all 3 boys stay at the RMH with us. It was so sweet. Liam slept on the couch, Quinn snuggled up in the twin bed with Woody, and I cuddled up with Ro in ours. Ronan woke up this morning and the bloody nose from HELL had returned. He has been doing so well and has not had any for months. I sat and held it for 45 minutes, trying to get it to stop. The icing on the cake was Ronan telling me he was going to be sick to his stomach and he then went to the bathroom and threw up a massive amount of blood. We all got dressed, put Ronan in the stroller while Woody pushed him and I managed to walk beside Ronan while holding his nose. We made it to the Urgent Care at Sloan which is basically their own private ER. Platelets were ordered as soon as we arrived and they drew his labs. The bloody nose continued but we all remained calm. Mimi and Papa soon came to get the twins, but Quinn wanted to stay with Ronan. The kid passed up a chance to go to Dylan’s Candy Shop to stay with Ro. Unreal. He sat with us, helped me by getting me Kleenex after Kleenex, and didn’t flinch when Ronan once again, threw up blood. You would think this would all be pretty traumatic to a seven year old, but it doesn’t seem to phase Quinn at all. He is just happy to be with Ronan and to be helping out. Woody took Quinn back to the RMH to shower, do laundry, and clean up while I sat with Ronan and got his bloody nose under control. We both fell asleep curled up on the bed while they pumped platelets into him and then blood. A few hours later we were admitted up to the 9th floor where we will remain for probably most of the week. Ronan’s ANC counts have hit rock bottom and are now at 0. This chemo has wiped him out. As much as I hate to see him this way, I just keep telling myself to keep the bigger picture in the back of my mind. He has to get worse before he gets better and the chemo is doing it’s job.

Mimi and Papa took Liam and Quinn to the movies and Woody returned back to the hospital around 7. Ronan was asleep so I snuck out and walked back to our place. It was so freezing that I had myself talked out of the run that I had been planning on doing all day. It was already dark, freezing, and I was beat but I convinced myself to just try to get in a few miles. A few miles turned into 12. Not sure how that happened….. I ran my usual route and then some. And it had nothing to do with taking a wrong turn out of the park, running the streets of NYC, and then getting lost. Thank god for GPS on my phone!! After I found my way back to our hood, I went to grab Quinn from Mimi and Papa’s. He will stay here with me tonight while Woody sleeps at the hospital. The twins are not allowed to visit Ronan due to their age and it being RSV season. We will all rotate taking care and spending time with them. Having everyone here makes everything seem o.k. and everybody is so much happier.

So, no Internet still at RMH. Writing from my iPhone is getting annoying but I wanted to share with you all our latest update. Going to leave you with something that has totally made my night tonight. A few days ago, when I was walking from Sloan to RMH, I had noticed that someone had taken chalk and written,”Become your dream.” It made me smile. Tonight, on my run in the middle of Central Park as I was about 4 miles in, I saw the same thing written. Throughout my run, this person had written the same thing over and over at least a dozen times. Each time it made me smile. What a beautiful thing to write and I wish I could hug this person. Something so little filled me with so much happiness and love. What an amazing gift and it truly does show you how the simple things in life, mean so much.

That’s all for tonight my loves. Sweet dreams to you all!!

xo

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The whole Thompson Family takes NYC!

Writing from my iPhone so hang in there peeps!!

I cannot tell you how good it feels to have my family here. It has made such a difference in everything. The happiness that Liam and Quinn bring to all of our lives is so infectious and the way that my 3 boys love each other is unlike anything I’ve ever seen in my life. I am so grateful for my in-laws for making the trip out here to bring the boys’ to us so we can all be together as a family. We are happy, peaceful, and enjoying every second we have together to the fullest.

We spent today enjoying the sunny NYC weather, even though it was still cold out; it was beautiful. We walked to Central Park and then over to The National History Museum. Ronan was able to get up and out a little bit, but nothing like before all of his pain. I pushed him in his stroller or carried him. His arm is still hurting him badly, but he seems to be in less pain and is trying to use it more. I bet it will be a good month or so before it is fully healed. I am just thankful for every new day, as it means his arm is healing more and I know he will soon be back to his old self. His spunk and spirit has not diminished at all, especially with his brothers here. He is just as feisty as ever which makes for a very happy mama.

Last night I had the chance to speak with Liam and Quinn’s first grade teacher, whom I adore. She has been so amazing to us this year with everything that is going on and I wanted to update her on our latest plan. She was very supportive of our decision to bring the boys’ out here so we could spend some time together. She gave me such peace of mind by telling me how well the twins are doing in school and what kind, good boys they are. It is such a weight off my shoulders to know that they are doing so well. It just shows how much the love that surrounds them and us is paying off. Even though their little lives have been turned upside down, it does not seem to be affecting them in school in the least bit. I could not be prouder of my two sweet boys. They are so tough and going through something like this is only going to make them out to be the best of men when they are older. They are learning the importance of family, being strong, and love. How when you stick together, you can get through anything…… no matter how hard or awful it may be. I am not pleased that they are learning these lessons this way, but I am determined to find some sort of beauty in the lessons that no sibling should have to learn.

I am just going to touch on the “Nurse Christine” ordeal for a few minutes on here, because I feel as if it needs to be addressed. I realized that when I started this blog…. I was putting myself out there, to everyone; crazies included, but it was a chance I was willing to take. Many times in the past, this person has written nasty comments on my blog but I have been able to catch them just in time to put them to spam. One of my reasons in doing so, was because I wanted to protect all of you from wasting your time and energy on this horrible person. I apologize to all of you for not catching her comments sooner, as I have been so busy that I have not had time to read anybody’s comments until this evening. When I saw the uproar, I had no idea what it was in regards to, until I backtracked to find that this person had used a different, but somewhat similar email to post something utterly disgusting, once again. I put her comment to spam again, but apparently there were a lot more comments made. I have erased them all as best I can, but I know there is only so much I can do. Everyone is not going to be a fan of mine and that is fine. But to not be a fan of our family who is fighting so hard for the life of our baby boy, and to say things like we’d better prepare ourselves for his death is just sick and twisted. We know what we are up against. We do not think we are better than anyone else and I’m sorry if my pretty much perfect life before this has offended you. We are good people, with good hearts, who work hard for what we have and the life that we live. I truly believe that Ronan was chosen for this path to make a difference in the world and his story will have a positive outcome. Those of you who know my son, you know that he is special beyond belief and there is a very good reason for all of this. To all the Nurse Christine Crazies out there who probably live alone, with 25 cats, and star on the A&E show, “Hoarders,” you need to go elsewhere. Your negativity and bad “juju” is not going to get me down. I pity you and you just make me feel sorry for you. In the words of my husband, you are just a bad person. The one thing I did learn through
all of this though, which I already knew before, is how badass Ronan’s fan club is. You all had me in stitches with your words and how fired up you were. After such a crummy few days, it was so nice to be laughing out loud again. I couldn’t be prouder to have you all as Rockstar Fans and family. You all melt my heart. One last thing to “Nurse Christine.” Your 15 minutes are up my love….. my 15 minutes will be up when there is a cure for Neuroblastoma and I will not stop until then. You need to go find a hobby, join a Bullies Anonymous Group, and go get some intense therapy. Your negativity is not welcome here.

I hope you are all having a beautiful weekend full of the love and beauty that you deserve. I hope you find a hundred things a day that you are thankful for will continue to spread your love around in your day to day lives. Thank you for sharing it with me daily by keeping us in your thoughts and prayers. I am beyond blessed to have you all on our side!!!

xoxo

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Song of the day

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

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

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

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

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

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

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

xoxo

One foot in front of the other

Another day done. Ronan slept in for NYC time… 10:00 a.m. which was nice as we were all tired. He woke up a little grumpy, still complaining of pain. I tried my best to entertain him while Woody got some work done around here and he soon left to go back to RMH to get some quiet work done. For being stuck in a hospital, the days sure do fly by and I can’t even keep track of what we have done. We don’t really watch movies or T.V…..so I’m not sure where the time goes. We listen to music a lot and do a lot of playing. I do my best to make sure Ronan is as happy as can be; even though he asks for Liam and Quinn a dozen times a day. We did Ronan’s 4th day of chemo, and 5th day of radiation. So far, he’s done really well with the chemo. No more vomiting. We went down to RT (Radiation) tonight around our usual time, 5:00. I had Ronan waiting in his little wheelchair when one of the RT guys walked by and did a double take of Ronan. He came over and went on and on about how he is the most beautiful boy he has ever seen, how he has movie star looks and the most unbelievable eyes. I just nodded my head and told him I knew. He asked what Ronan’s name was and introduced himself as Kerry. He was really sweet and wouldn’t stop talking about Ronan’s piercing “Husky dog eyes”. It was very cute… you don’t usually hear a twenty something guy go on and on about how beautiful a boy is. Ronan can melt anyone’s heart and it was blatantly obvious from today.

Ronan knows the drill now. He knows he is to be perfectly still as he down still as gets his radiation. Our friends down in radiation had “The Killers,” playing on the stereo system for Ronan as they know he loves that band. I covered him up with GiGi,(his blanket) and he clutched his pistol gun in the other hand and I left the room. It only took a few minutes again and I watched my brave boy from the screen and talked to him over the speaker system. We were soon done and Ronan was very tired. He sat in my lap and our escort wheeled us back up to our room. I somehow talked him into a sponge bath, but only if I would put his Star Wars guys in the water too. He stood up and I got a tub, filled it with warm water and bathed him and brushed his teeth. I also scrubbed his Star Wars guys for him to make him happy. He is sleeping now and I am waiting for Woody to return so I can go on my run. It’s going to be a dark one tonight…. sorry Little M. I’ve got to go run tonight… my mind needs it.

Woody returned to Sloan around 8:00 NYC time. Ronan was asleep so I quickly snuck out. I went to the RMH, changed my clothes, and headed out. I was on the phone with my sweet Niki right before I was getting ready for my run. I got the usual, ” You be careful… I won’t even run in Central Park at night.” I gave her my nobody is going to mess with me answer and she laughed and said she it would probably actually be really good for me to fight off someone, so I could blow off some steam. I told her would just pretend like my slayers (as Marisa likes to call them) were cancer, and kick their asses. We had a good laugh about that one together. My new loop from the RMH and back ended up begin almost 9 miles. Perfection. The perfect run, perfect mileage, perfect night with no Slayers in sight, Marisa. It was refreshing, grueling, and just what I needed. I love running in this city and I love that I now have a set path and I know the distance. Gotta love GPS on the iPhone. I ran a fast 8 and a half-minute mile…. got back to the RMH, showered, packed a bag and grabbed some soup at Delizia’s, my one meal of the day. I have decided that I can seriously live off of my coconut water, coffee, Delizia’s minestrone soup, coke and chocolate. So ridiculous but whatever….. it works for me and I can actually keep that down without throwing up…. knock on wood.

I almost made it through the day without crying. Almost. I was sitting on the ground, rubbing Ronan who is now complaining of his legs hurting…. so I sit and massage him most of the day. Our senior in high school roommate started vomiting and we could of course hear her; which is awful. That threw me over the edge and I started bawling. Ronan watched me and asked why I was sad. I told him because the girl next door was sick to her stomach and it makes me sad. I quickly pulled it together and helped get new linens for her. Stupid cancer.

O.k. my dears… it is 12:30 at night here. My body is aching and my mind is officially done for the day. Sweetest dreams to you all.

My song for the night

In a New York minute

As Ronan slept last night, I found myself cuddled up on the single little bed that we have in the room with Woody. It is so tiny but I fit absolutely perfect in it snuggled up to Wood. At one point, he was rubbing my back while I was sitting up, looking at the floor. It was dark in our room and I just started to cry. He continued to rub my back and said something that I will never forget. He told me how sad he is that this is my life, that he only wanted to give me the best life ever. I wish I could say I came up with some uplifting words to say back to him, but I only nodded my head and continued to cry. We ended up whispering to each other about some things back and forth. I cuddled up on the little single bed with him for a while. He made me laugh by reminding me how when we were so young…and on our 30 day trip to Europe,while in London,the hotel we were staying at only had 2 twin beds. I had insisted on not sleeping in my own twin bed, but in his twin bed with him. It was cramped to say the least but all I wanted was to be as close to him as possible 24 hours a day. He said this was just like London and we both had a good laugh. Hardly London, but for a second I pretended like it was. Just the two of us, no worries, no cancer, no tears. Just us, blissfully happy, with not a care in the world. Seems like a lifetime ago. It’s nice to know after all of this, we can still go back there, even if it is only for a few minutes as our baby boys sleeps peacefully beside us in his hospital bed.

This morning I got a wonderful visit from a wonderful boy. Yes, I say boy, because he is only 26 and 26 feels so young to me, even though I am not too much older. I have talked about Ronan’s last roommate at Sloan on my blog before, Phoebe. The beautiful Phoebe, with the sparkling fighting spirit just like Ronan, and the bravest soul. During our stay at Sloan, while sharing a room with Phoebe, we became friendly with her cousin, Jonathan. He spent a lot of time with Phoebe having intense talks with her and teaching her all about life. Tricia, Macy and I all fell in love with the two of them. We have kept in touch and Jonathan stopped by this morning on his way to take the train to spend the week visiting Phoebe and her family at their home. It was so nice to see him and introduce Woody to him. He spent about an hour with us, and I got to hear all about the trip he just took to India,  before Ronan gave him the boot:) We had a good chuckle about that and Jonathon made Ronan laugh by telling him not to worry about it, that he was used to getting kicked out by ex-girlfriends, parents, etc;) He had Ronan is stitches even with how terrible he is feeling. It warmed my heart to see him and I sent him on his way telling him to give our love to Phoebe (who is doing wonderfully) and her mom, Ellen. I hope to see him again soon as he is now a friend for life. Tricia and Macy were both very sad that they were not here to see him too. That just means both of those girls have to come back here so we can orchestrate a reunion with Jonathan. Before we all do the NYC Marathon together once Ronan is well.

Woody went off and worked for most of the day. I sat and cuddled with Ronan and played Star Wars with him in his bed. We sang a lot of songs and I got him to get up a little bit so we could look out the window and shoot the snipers on the roof of the NYC buildings. He is still hurting and now is saying that everywhere hurts. I am doing my best not to panic and hoping it is just he hospital blues. We had a visit from the floor doctor today and his team as they were doing their rounds. It’s the first doctor here the I have met that I immediately didn’t like. He was condescending to say the least. As soon as he left, I gave Woody “the look” and he started cracking up laughing saying he knew I was going to bitch about him. I think my exact words were, ” I want to punch that guy in the face.” Woody agreed. The guy was a douche and I did not appreciate the way he was talking to Ronan, Woody or myself. He used some really stupid analogy on Woody when Woody asked if we could be discharged today. We both knew that the answer was going to be no, due to the pain control, but the way the doctor went about telling us no, was not necessary. We are not idiots and he could have said it a little more nicely instead of treating us like we were morons who came so far away from home. All the way from the Wild Wild West of Phoenix, AZ, where apparently, we have not evolved. I did also did not appreciate the way he made us feel like radiation and chemo was not going to do the trick for Ronan’s pain. We were told not to expect the pain to ease up until the end of the week. It is only Monday, you dick. Give some very scared parent’s a little ray of hope instead of going straight into what our options are if this doesn’t work. I don’t want any other options now, because this is going to work. I hope I never have to see that doctor again because I may just give him a swift kick in the balls.

Dr. Modak came by just as I was freaking out in my head over Ronan’s pain. He asked how he was doing, I said not well, and I told him we were very worried. He reassured me that everything was going to be o.k. and that the radiation was going to take some more time to kick in. I straight asked him if he feels like we can still get this under control. He told me without a doubt. Dr. Modak would not lie to us; my faith is in him completely. He said the combo of the chemo and radiation will work. We will take care of this little bump in the road and get Ronan back on track. I have no doubt about this.

After Woody returned to Sloan after a long day/evening working, I ran out to go back to the RMH to shower and gather up some new clothes. I was tempted to go on a run, but it was already 9:00 p.m. here and I wasn’t feeling up to being dangerous tonight. I had Marisa’s little voice in the back of my head chirping away about running in Central Park at night. I was way too tired anyway. Hopefully tomorrow I’ll sneak in a some time and get a run in. Lord knows I really need it even though my energy level is shot due to hospital life. It really takes a toll on me emotionally and physically, no matter how fun we try to make it.

Back at Sloan now and all is peaceful. Ronan is sleeping, Woody is on his computer, and our adorable roommates are listening to some show on their computer and laughing. The girl we are sharing a room with is a senior in high school and she has a girlfriend spending the night with her tonight. Her sister has been here every other night. They are adorable Jewish girls and I have a had a blast watching them celebrate Shaushan Purim all last week and it ended last night. They have been dressing up in costumes, laughing and talking all about their religion, beliefs, high school, etc…. It has been very sweet and uplifting. Never mind that one of the girls is very sick with cancer. Has not dampened their spirits at all. It is roommate heaven, as far as having to share a room goes.

It’s officially very late here… and I am a sleepy girl. Please continue to send Ro your strength and love…. please let his pain subside. And New York Miss Macy…. no more tears tonight my love. He is going to be fine. I love you.

G’nite all you beautiful people. Sweet dreams to  you all.

xoxo

My song for the night… I heart Johnny.

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