Sometimes it takes the hardest fall, to know where you really stand

Ro baby. I’m back home. In your home where you should be but are not. It was strange to leave NYC without you only to wind up back at our house, without you. Your brothers were sound asleep as it was late when I got in. I went into their room and gave them a million kisses. I was thankful to have them to come home to. I woke up this morning to hearing your brothers get up and in the shower; all by themselves. I didn’t even have to wake them. They are getting so big and responsible. They are so much more responsible than most 8-year-old boys. I guess that comes with the hard lessons they have had to learn. When I came home last night, I saw a laminated poster that Liam had made for school that your daddy had helped him with. It was full of pictures of all things Liam. Along with the things about him such as his favorite place, food, thing to do, etc….. I read the words, “If I had one wish it would be _________. He had filled in the blank with, “unlimited wishes.” I looked at your daddy and I could feel the tears start to sting my eyes. I said to him, “Wait. He didn’t wish for Ronan back? Why wouldn’t he have wished for Ronan back?” Your daddy said he had asked Liam that question too. Liam simply replied that he would wish for that second, after he got his unlimited wishes. For a split second, my heart was broken over Liam’s answer but then I remembered how he is just 8 years old. How I know that he wishes for you back, everyday. But what kid wants to go to school and tell their entire class that they wish that their baby brother, who died of cancer, to come back? What 8-year-old, wants to explain that to their entire class? To me, that was even more heartbreaking. After my split second punch in the gut that I literally felt, it went away quickly and I thought to myself, “What a smart little kid.” I know how badly losing you has scarred your brothers for life. I am watching them, slowly learn how to live without you. And I can tell you everything they do is with 110 percent more effort, fire and passion. They are the best little boys in every way possible. I am so lucky, Ro. I am so proud of them.

I spent today with Dr. JoRo. We talked all about New York and how good it was for me. She is so glad I fought for that trip. I am glad too. I listened to myself tell her things that I never thought I’d hear myself say again like I feel hopeful and inspired. That I feel like I am starting to believe in myself just a bit. She had me fill out a few questionnaires that apparently, I had filled out when I first came to see her. I told her I didn’t remember filling out a thing. I stared at her questionnaire like I was seeing it for the first time. She assured me that I had filled it out before and she watched me as I checked the boxes off one by one, once again. She compared my answers to the one’s I had answered only a few months after losing you. My numbers were really high on her scale as far as PTSD and some other things go. My numbers are a little lower now. She talked about how she would never say I’m getting better because you don’t get better with something like this. But she did tell me I’m learning to cope with things a little more. I’m learning to slowly come back to life, one piece at a time. I guess this is progress. I told her she had given me this test at the wrong time….. straight from coming back from a NYC trip. I told her to give it to me next week, after reality came crashing down again. She laughed and said she would.

I forgot to tell you a totally funny story that happened on my last day in New York. I was out for my Central Park run and I had stopped at mile 4 and sent Katherine some really pretty sunny NYC picture along with some words about how lame this extra safe, Central Park daylight run was. She replied back with something even more clever and brilliant than my smart ass comment. I continued on my extra safe stupid this is not dangerous enough for me run, laughing at her words. I was a few miles back into my run and I guess I was running pretty fast, but I was totally zoned out. All of a sudden, I tripped on something and felt myself go flying through the air. And I’m not talking the kind of flying where you end up on your ass. I’m talking the kind of flying that it’s like you are running to home plate in a baseball game and go sliding in head first to score a run. Oh YEAH. That was totally me. Except I was not on a baseball field. I was on hard, black pavement. I picked myself up quickly and totally just started running again like nothing had happened. My hands, clothes, and body told a different story. My hands and clothes were covered in the black NYC streets, I had blood and asphalt, engraved into my skin, and I could feel the huge bruise on my thigh getting bigger by the second. I finished my run, in fits of giggles though, so wishing somebody would have caught my totally awesome fall on tape. I texted Kath and told her that it turns out, running in Central Park in the middle of the day, CAN be dangerous. I could be on to something here and I have the asphalt tattoos to prove it. I’ve scrubbed for 2 days now and my hands are still black. I told you NYC didn’t want me to leave. Or at least it wanted to send me off back to Phoenix with the reminder that no matter how hard I fall in life, I’m the only one that can pick my sorry little ass back up. Nobody else, Ro. There was nobody there to save me or help me when I fell yesterday. And even if there would have been, my stubborn self would not have taken their hand. Because deep down, I know that it is going to take a lot of falls, bruises and bloodied hands to get through this. I know that I am the only one that is capable of fixing my owies, as you used to call them. You are so worth each and every one or them, Ro. I love you so much.

I’m tired baby. I spent the rest of tonight doing all the things that I should be doing like helping your brothers with their homework and playing football outside with them. I missed you every single second. I love you to the moon and back. I hope you are safe. G’nite, little one. Sweet dreams.

xoxo

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

A run and some Sookie Sookie time

Today was a lovely day indeed. My mom woke up super early (5 a.m. PST) to get down to Sloan to donate her platelets to Ronan. It took a couple of hours and it was so nice of her to do. She showed up at the hospital around 10:30… close to the same time as Trish who came armed with Starbucks for me. We sat and played with Ronan for some time and then I left for my daily “shower,” among other things. Trish and I returned to the RMH and put on our running clothes to do my Central Park run. It was a gloomy, cold, and absolutely perfect running weather kind of day. At least for me. I love nothing more than running on a cold day. We were about 4 miles in and I was in the middle of texting Niki to let her know we were close by her place. She bundled up the kids, put them in the stroller and met us on 81st. We walked down into Central Park and let the kids run around and play in some big piles of dirt. They were in heaven. I was in kiddie heaven just being with them and my 2 good friends. Little Wesley even took my hand and held it as we were walking down the sidewalk. It meant so much to me walking and holding hands with my little friend. I was just sad that Ronan wasn’t there to see this. He would have loved everything about today. We still have some time to play with our friends if he gets discharged this weekend. Praying to those ANC gods. I am going to be shocked if he does not have an ANC by tomorrow. He looks so good and is acting like the Ronan I knew before he had cancer. So loving, funny, sassy, and a little wild.

After Trish and I did our little pit stop to see our friends, we headed off to continue our run. I was on fire today…. it was the best run I’ve had in a couple of weeks. I felt as if I could have run forever. We finished at 8 miles and it felt amazing. I love having my running buddy here with me; we used to run together all the time. Just add it to my list of the things I miss the most. Check.

I had just enough time before I had to return to the hospital to take Trish to my Sookie Sookie Shady Massage Parlor. We parted ways at the curtains and she chirped out, “See you later!” even though we were right next to each other separated by a curtain. She about died when I showed her what the place looked like from the outside but I told her to trust me as she was about to die and go to heaven. For the next hour, that is precisely what we did. What a perfect day with my beautiful friend. So good for my soul. We ran back to RMH and I showered quickly and packed up my overnight bag. I left Trish there and went to say goodbye to my mama and hello to my Ronan. It was hard to have my mom leave today. As we were hugging I looked over at Ronan who was watching us and he was all teary eyed. He has already told me a dozen times tonight he misses his Nana. Poor little monkey.

He has been in a great mood all of today and tonight. We played our usual Star Wars/Walk the halls and shoot the nurses games. We actually had to switch rooms tonight due to us getting a girl roommate who was a little older. The only room they had available for her was ours, or another one with a 14-year-old boy in it. They like to keep boys together if they can and I understand that it would be awkward for a boy and girl who are older and around the same age to share a room. We happily switched and moved rooms. Not a big deal but I cannot even go into details about the things that have gone on in our room tonight. It’s too sad, too intrusive, and once again, totally unfair.

Ronan has been happy though and that is all that matters. We snuggled up and watched one of our favorite movies together, “Ponyo.” I don’t think I could ever get tired of that movie and Ronan absolutely loves it. It is very sweet with a good message. So today was not only the perfect day, but the perfect night as well. I had to make it this way tonight… I had to work extra hard not to break down about missing my twins’ baseball game. I held it together, I pushed though my feelings of sadness and replaced them with focusing on the here and now and telling myself that there will be a hundred other baseball games of theirs that I can watch. I just sometimes get overwhelmed with thinking I have a lot of making up to them to do. I just hope they understand and I think they will, but it still worries me. I don’t ever want them to think I love them any less than Ronan. I hope they understand the sacrifices I have to make because I don’t have a choice and I have to be the one here with Ronan so we can get him better. They are smart, compassionate little boys. I am pretty sure they will be o.k. They know how much I love them.

This is all the writing I can do tonight. Beyond tired from a restless night last night and a long day today. Huge thanks to my mom for coming out here to help me. She was a huge help and I think she had a good time. I hope so… she loves her time with Ronan so much. I love you, mom. I hope you all have a wonderful weekend and enjoy your families to the fullest. Everyday with a healthy child is such a gift. Don’t ever forget that. The little problems in life that seem so big, really are not. It took my child getting cancer for me to realize that. I will never forget this again. Lesson learned, I just wish it was game over and Ro was back in PHX, healthy and with his brothers, where he belongs. Soon my little man, I promise.
G’nite, sweet dreams, love you all.

xoxo

Princess Leia and Captain Rex take on the world… or at least the halls of Sloan-Kettering

Last night was a little better than the night before. We have had a really, really, extra sweet nurse, Alex, the past 2 nights. She is adorable, looks like she is about 12, and really gets along well with Ronan. She is super patient with him, very calm, and is very doating. He meshes well with her which makes it nice on my part. All of the nurses are great here, but Ronan seems to have a connection with Alex. Reminds me a little of Arica back home, one of our favorite nurses on the floor of PCH. Miss her. I asked Alex what we could do last night to make sure we had less beeps. She tried her best, but the stupid “asspole,” went on beeping most of the night. “Inclusion in line, Inclusion in line!” is what it said. Which basically means there is a bubble in the fluids he is getting which causes it to beep every half an hour or so. Very disruptive and as my Charisma would say, “RUDE!” Ronan also had to be woken up twice to be given his morphine, which was not fun at all. He was a very mad little boy about it. After about 20 minutes of fighting, he swallowed his medicine and went back to sleep. Seems cruel to wake a sleeping child but rules are rules around here.

My mom came to relieve me around 11. Ronan was in a much better mood this morning when she arrived. We were sitting in our bed playing, when we got a special delivery via fax. A message from our very own “A,” back home! It was the sweetest note written to Ronan from her. I read it out loud to him and he got the biggest kick out of it. She even drew a monkey at the bottom of it for him. So sweet and thoughtful of her. It made both of our days. After our special letter, I gave Ronan his bath. He once again, sat and bathed all of his Star Wars guys which kept him busy. I told him goodbye and slipped out for my daily break. So thankful that my mom is here to help. She has had a lot of nice bonding time with Ronan. It is special for both of them. I went back to the RMH and thought about going on a run, but my left shoulder was killing me today. I decided to go around the corner to the Asian massage parlor I discovered a couple of weeks ago. It seriously looks like something out of a sketchy movie, but one thing I love about this city is you can never judge a book by it’s cover. It is the cheapest/best massage I’ve ever had in my life. Forget that there is almost no privacy as you are separated from other customers though sheets hanging from the ceiling that separate your beds…. the two times that I’ve been there, the place has been empty. A very well hidden secret I suppose 🙂  The women there give the BEST massage I’ve ever had in my life. I left there with still some pain in my shoulder, but it is better than it was. Thank you, ah sookie sookie now. (that was for you, daddy woo)

I returned to Sloan to find my mom chatting with Dr. Kushner. He stopped by to check in. We talked about Ronan and how great he looks and he told me him not having an ANC for this long is normal, considering all he has gone through. He also told me it’s great to see how well he is tolerating the chemo as he does not look like a sick child whose just completed his 8th cycle. He is such a tough little man. We talked a little more about our plan of attack but nothing will be confirmed until we see the results of Ronan’s scans, which are next week. Scanticipation begins. UGH. Dr. Kushner also sat and talked to me about running, because he is an avid runner himself and we usually always talk about it. He gave me some great Central Park tips which I always enjoy. He really is a very nice man.  Every time I look at him, I can’t help but obsessing over how brilliant he is. I cannot imagine the way his mind must work…. he has revolutionized so many things in the Neuroblastoma world. I really have to focus when I talk to him, otherwise I catch my mind wandering thinking about how he does what he does, eats, breathes and sleeps this disease everyday of his life. I’m curious as to how he came upon devoting his life to Neuroblastoma. So many questions, never enough time.

While I was out today, I caught up on things like mail, bills, emails, phone calls, etc…. I got to hear the voices of a few of my dear friends…. Fernanda, Tricia Boo, Niki, Danielle, Marisa, Pam, Amy, Lindsey, Auntie Karen, and Mr. Sparkly Eyes. I don’t get a lot of time to talk on the phone here due to being at the hospital so much. When I’m out alone, walking the city, I try to return a lot of my calls. It was so good to talk to my friends today. Good to hear their voices and to check in. Miss them all much.

Ronan and I spent tonight like we always do. We walked the halls for about an hour, shooting anybody that came our way. He was Captain Rex and I was Princess Leia. The nurses, janitors, doctors, patients, are great at playing with us. We came back to our room, played Star Wars, then called Liam and Quinn. It was good to hear their voices and I always love to hear the conversations between my 3 monkeys. Adorable. I cuddled in bed with Ronan and we sang “Twinkle Twinkle Little Star,” together just like we sing every night while I rubbed his back. It didn’t take much for him to drift off to sleep… it’s late here, midnight now and he fell asleep only about a half an hour ago. Sweetest dreams to the sweetest little boy. I whispered that I loved him to the moon and back and kissed him on his cheek. He tastes like milk and sugar.

My Tricia Boo is taking the Red Eye here tonight. Cannot wait to wrap my arms around her! She is staying until Sunday and Niki got in today as well. Double YAY! Niki is here with her kiddos and I am going to try to see them tomorrow. I only wish Ronan would be discharged so he could see his friends too 🙁 Keeping my fingers crossed that it happens by this weekend. I was telling Mr. Sparkly Eyes tonight that we have been inpatient for almost 3 weeks now. He feels awful and wanted to know how I was doing. I tried my best “Mrs. Positive Attitude,” and replied that I was making the best of it. He then went right to, “Cut the bullshit and tell me how you’re  really doing.” Can’t get anything past that man and it made me laugh out loud. I am such a fan of the bluntness. How am I doing this?? I honestly have no idea. I texted Woody in the middle of the night 2 nights ago to say if he didn’t bust us out of here I was going to murder someone. I have my moments of temporary insanity, but then they are usually quickly washed away by a flash of happiness, gratefulness, or beauty that comes my way… even if it comes in the form of something as small as Ronan telling me I look pretty and thanking me for being his mom. I swoon for his little, kind words. They mean everything to me.

Alright my sweethearts. Tired tonight and going to try to get some rest. G’nite and sweet dreams to you all. G’nite my Big Daddy Woo. Enjoy our cozy bed and cuddle up to my Liam and Quinn for me extra tight. I LOVE YOU AND MISS YOU SO MUCH.

xoxo

Goodbye little eyelashes, until we meet again

My mamacita made it safe and sound. She showed up to the hospital around 10 a.m. EST, and I didn’t even have to give her directions. Ronan decided last night that he did not want her to come. He kept saying he didn’t want to see anybody except for: Me, Woody, Liam and Quinn. When my mom arrived, he screamed his head off. She waited in the hall for a good 20  minutes before he would even let her into the room. After about an hour, he started playing guns with her and warmed up to his Nana. He is so territorial since all of this has happened. Makes it difficult to leave him with other people because the mom guilt kicks in. After Ronan settled down, it was time to go down to RT. We sent my mom out to pick up sandwiches nearby and Ronan sat in the wheelchair while our escort took us downstairs. I walked and carried his toy guns in one hand, and held his little hand in the other. He insisted on holding my hand the entire way downstairs. I told him it was like we were on a date. He laughed and nodded his little head. When we arrived to RT, we waited for our friends to come out and get us. Ronan was very excited to shoot them all with his new gun that his roommate gave him. They are all very good at playing along. As I put Ronan on the radiation table today, his little eyes were watering non-stop and he was saying they hurt. I looked down to see a bunch of his eyelashes had fallen out and they were in his eyes. I kept trying to wipe them out, but the more I tried, the more they continued to fall out. It almost become to much for me to see. My baby, lying on the table waiting for his radiation, with his eyelashes falling out once again due to the chemo. It was all very surreal to me. After I cleaned out his eyes, I left him for his 2nd to last day of his treatment. Once again, it only took a few minutes and I watched my baby hold perfectly still on the screen while “The Killers,” played in the background. I fought back the tears and won today. Victory.

Once we were finished with RT, we went back up to our room and Ronan actually let me leave to go back to the RMH to shower while my mom stayed with him. I walked back, dropped off my things and changed into my running clothes. I ran my 8 mile loop but it felt like 14. Even the amazing weather couldn’t push me through today. I was tired and feeling it. Running in Central Park sure is different during the day than night. I tried not to get too sad about all the little kids playing on the playground, knowing that Ronan was sitting in a hospital bed…. but I couldn’t help it… it kind of ruined my run. I totally prefer my dark and scary night runs to all the shiny happy people that have taken over Central Park during the day. It stings and it was a constant slap in my face today and I wasn’t able to get my mind off of the fact that Ronan has cancer. I use my runs as an escape from things….. the day run did not do the trick. Lesson learned.

Once I finished up, I showered and headed back to Sloan. I found Ronan asleep and a very tired Nana. She didn’t sleep much last night so I sent her on her way so she could get tucked in for the evening. Ronan has been pretty feisty this evening. Telling me things like he is mad at me, he doesn’t like his nurse here and only wants his nurse back home, Sharon, to take care of him. He also told me he wants “A,” Kristen, and Dr. Maze to move here to take care of him. Made me sad. Made me even more sad when he told me he was never going to see his brothers again. Poor little man. He doesn’t understand any of this… all he knows is he has to be separated from the people he loves most and he doesn’t know why. Breaks my heart everyday.

We spent tonight playing in his bed. Again. His ANC is still at 0. I think this is the longest he’s went with an ANC of 0 for so long. I just want to take him home. He’s mad tonight. He’s been throwing things at me and telling me he hates me and wants a new mom. My almost 4-year-old has the attitude of a teenager. Can’t blame the kid. All I can do is tell him what he is saying is hurting my feelings and he needs to think about the words he is using. I know he doesn’t mean it. He is just frustrated with everything in his life right now. He finally calmed down, told me he was sorry and he loves me. He spent the rest of the night being sweet as pie.

Hope you all are having a good evening. Thanks for checking in with us. G’nite my lovely friends!!

xoxo

P.S. Made it through the day without any tears. Until now. I love you, Suz. You know you will always have a piece of my heart, no matter how far away you are.

Dear Mama,

It was so good to hear your voice today.  I miss you more than you know.  You seem so far away from me…..and you are.  I’m sorry that I never know the right things to say on the phone.  I feel like there is so much I’m not doing for you and it’s killing me.  I’m not writing this email so that’s you’ll reassure me of anything. I just want you to know that if my thoughts of you guys could be documented and emailed everyday….you would be inundated with messages.  I think about you and Ro and the boys and Woo 50 times a day.  I truly do.  I HATE every bit of this.  I HATE that I’m not closer.  I HATE that I don’t know how to help.   I HATE that I don’t get to talk to you about silly things anymore.  I HATE that Ro can’t play in Central Park while you snap pictures of him staring at you with those gorgeous baby blues.  I HATE that you and Woody are in two different states.  I HATE ALL OF THIS AND I’M SO SORRY that I can’t wave a wand and make him better.  All I can do is pray.  I pray so hard for him Maya and I know that everyone else does too.  It will work.  I have turned to God my entire life and I know he answers prayers.  Izzie and Jude and I pray at night now too.  It goes like this:
Me-  “Dear God, please protect Izzie and Jude.”
Izzie-  “Amen.”
Me-  “Dear God, please watch over all the children in the world.”
Izzie- “Amen.”
Me- “Dear God, please let us all have sweet dreams while we sleep.”
Izzie- “Amen.”
Me- “Dear God, please take Ronan’s cancer away.”
Izzie- “Amen.”
Izzie- “Goodnight God.  Goodnight Jesus.  Goodnight Amen.”
This is every night for us.  We will keep praying Maya and I will keep thinking about you all the time.
I love you so much,
Susie

 

 

 

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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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.

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

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:)

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!