The circle of life…. sucks

We woke up early this morning and ready for our clinic day. Fernanda, who flew all night arrived just as we were getting ready and ran down the street before seeing us to grab me a coffee. Ronan and I went out on the street to meet her and I cannot tell you the wave of happiness that washed over me as I saw my friend and her gorgeous smile, waiting across the street for me with two coffees in her hands. I was so happy to see her and we held each other tight as we embraced for our hug. She has such a way with me and I am instantly comforted by her mothering instants. I often feel like she is not only helping me take care of Ronan, but she is so good at taking care of me as well. I usually have a hard time letting go and letting other people do things for me but with Fernanda, it just comes naturally. I feel like she is my female version of Woody, if that makes sense. She is a source of such strength and comfort to me, much in the way that Woody is. I always know that when Fernanda is around, that everything is going to be o.k. Trish asked me tonight how in the world Fernanda does it all. My reply was because she’s Mary Freaking Poppins. Seriously. There are not many women in the world like her. We have such a strong connection and I am often amazed at the way we sync so well. Many times, I will be thinking about her, and then 10 seconds later she will call or text me. Our minds seem to be thinking the same thing and all I have to do is look at her to know this. Words are sometimes not even necessary. I am so honored, blessed, and thankful to have her here with me. I will never get over her leaving her 5 beautiful babies and husband at home to help me and as much as I tell her this, she acts as if it is nothing, but it means the world to me.

After I reunited with Fernanda, we headed off to Sloan to get Ronan to the clinic for his platelets. He was not happy about going and being “hooked up,” as he calls it. But I assured him it would only be for a short amount of time. We arrived and the nurse got things moving pretty quickly. Ronan was entertained by Fernanda waiting on him hand and foot and we promised him a trip to Toys R Us after we were done. We finished with our platelets quickly and went to meet with one of  “The Team,” members to discuss the plan for the next couple of days as far as scans go. Ronan coroporated for his exam and we were soon out of the door and off to enjoy the rest of the day. We decided to walk to Toys R Us, which was about 3 miles away but Fernanda and I agreed that the exercise and fresh air would be good. Almost as soon as we started our walk, Ronan fell asleep in the stroller and remained that way the entire trip there. It was a fairly wet, dreary, New York day, but I am such a sucker for this weather that I enjoyed walking in the rain.

Toys R Us was a hit but it was packed full of so many people. With Passover, Easter, and Spring Break here, the streets of New York are just as busy as Christmas. We couldn’t escape there soon enough and hailed a cab back to RMH instead of walking again. Fernanda picked up food at Delizia’s for us and we ate it together on the second floor in the community dining area. After lunch, she headed back to where she is staying so she could get in a little nap. Ronan and I were both tired too, so we came back to our room to rest. Before we came back to our room we went to check to see if we had any mail. We were told we did and it was a big box from our favorite little boys’ line; Fore!! Axel&Hudson. We took the box up to our room and I helped Ronan open it up. It was full of the most adorable clothes and hats for Ronan, as well as the cutest little girl Fedora hats. I handed out the hats to a bunch of the girls here and they were so excited. I think the moms were more excited as they kept trying to see if they would fit their heads. It made me feel so good to light up the faces of these beautiful girls today. Thank you Denise, for allowing me to hand out such amazing gifts. Ronan, being the stylish kid he is, lit up like it was Christmas. He kept trying to wear three hats on his head at once as he said he couldn’t choose because he loved them all. Denise, if you are reading this, please know that you and your company are absolutely amazing to support pediatric cancer the way you do. You are inspiring, brilliant, and if the world were full of more people like your company, it would be a much better place. Not to mention, the quality of your clothes are to die for! I am so proud to put my little Rockstar in your gear. Thank you from the bottom of our hearts. Everybody needs to check out their website, I should have a link on the side of my blog. I will forever support you and your clothing line. It makes Ronan’s day to be all dressed up in your adorable boy clothes and hats.

After we woke up, Fernanda texted me to say she was ready to come back over so I could go on a run while she watched Ronan. My run didn’t end up happening as we went across the street to Barbra’s apartment, who runs the organization Candlelighters, as she had a Star Wars treat for Ro and I wanted her to meet him anyway. We stayed for about an hour and enjoyed the company of Barbra, her husband, another mom, and her son, Jack. It was soon getting late so we headed out to grab dinner before Ronan got too tired. We sat and I ate for Fernanda. She talked me into some protein and asked if I really wanted to eat it or if I was just doing it for her. I told her it was all just for her and I did the best I could on the food in front of me. She is such a mother hen, which is a very good thing for me now. There was some awful woman sitting next to us at dinner and I was wondering if I was the only one picking up on it, but I gave Fernanda my look and I knew she knew it too. She kept looking at Ronan and it was if she wanted to throw up her dinner. She kept giving us the dirtiest looks and I wanted to say to her, “I’m sorry, if the fact that my child has cancer bothers you so badly that you can’t  eat.” The look of disgust on her face was so obvious that I wanted to go over and strangle her. When we were walking out we got a few more looks or more like complete stares. I noticed them all and Fernanda did too. She totally gets what I was talking about yesterday on my blog. The staring is everywhere. If you’re at least going to stare, have the balls to come up to me and say “God bless you.” Or “We’ll keep him in our prayers.” Don’t just be rude and stare. Grow some fucking balls and be proactive about him, who has a name. His name is Ronan Thompson, and he lives on this fucking planet. Stop acting like he’s from outer space. Somethings gotta change because if this  keeps going on, I may go postal on someone’s ass. After dinner we came back to RMH and played with Ronan. He was tired from todays events, as we all were. Fernanda hailed a cab and went back to her place. After she left, Ronan decided he was still hungry and he wanted scrambled eggs to eat. I happily made them for him with extra butter and extra cheese. Anything to fatten my baby up. We sat while he ate and talked with some of our friends here. I’m not going to go into details but I am saying extra prayers tonight for a very special little girl here whose mother I have fallen in love with. She isn’t doing too well and watching what the mother and father are going through is heart wrenching. It is a place that no parent wants to be and all I can say is another big Fuck You to cancer because there are no other words.

While I was taking Ronan upstairs to get ready for bed I was talking to Woody. I guess he told me last night but I was asleep and don’t remember our conversation, but our little wiener dog, Monroe, passed away. As soon as he said those words the conversion we had the night before slowly started to creep into my head. I started sobbing hysterically. Our two dogs, Monroe and Douglas haven’t lived with us for about 3 years due to trying to sell our house, then selling it and moving into our new house, so they have lived with Woody’s parents who also had 2 wiener dogs. While my 2 were there, one of their dogs passed away so we just ended up leaving our 2 so they could be with the one dog Kay and Charlie had left. They were happy there, together, and Woody’s parents have the perfect back yard for the 3 little musketeers. We missed them a lot but life all of a sudden got so busy, and we would spend time with them when we went over to their house. Little Ro, as we called her was an itty bitty thing. She loved to lick you and be held and was always shivering because she was cold. She was the sweetest thing. Hearing that she passed away hit me harder than I though it was going to, considering what we are dealing with now. It still made me very upset as it’s watching the cycle of life and that is never an easy thing. Woody bought those dogs for me before we got married. They were our first, “babies.” Tonight, I will say a little prayer for my little mohawked Monroe. She was the best puck rock Dachshund that ever lived. R.I.P little Ro. I’m sure we’ll hear your barking all the way down from heaven:) We all loved you so much.

So tomorrow. Ronan has a CT scan at 11:30 and we are tying to do it without anesthesia which I totally think he can handle. We of course need this scan to be good and I know they will be good. I have faith, hope, and love surrounding me at all times, so it cannot go another way. Please pray for him extra hard tonight. I will update you as soon as I can.  Thank you all my beautiful souls. You keep me strong when I am at my weakest and you push me forward when I think I can go no more. With all of you on our side, we can get my baby boy through this. Cancer has no idea how strong of a child he is and who they are messing with. They picked the wrong Ronan “Fucking” Thompson. I wonder when Ronan does beat this if they would really let me change his middle name to that. I’m sure not, but writing it out cracked me up tonight. He surely deserves it. My strong son, my strong boy, he will not be defeated. He is going to come out the other side of this with such determination to do amazing things in life. I cannot wait to see what kinds of things he comes up with and I will fully support him in everything he does. A mothers love is an unrivaled force of nature.

Ambien kicking in. I’d better get off this computer before I start writing crazy things. Good thing I don’t have a car to drive;) Totally kidding. I am going to cozy up in my twin sized queen converted bed with the most beautiful boy in the world. Just don’t tell my husband.

G’nite peeps!!!! Have a beautiful day tomorrow. G’nite Daddy Woo, Liam, and Quinn. Miss you!

Extra special G’nite to my twins’ 1st grade teacher, Mrs. Martin. Hope you had a beautiful birthday day, Cindy. You deserve it so much for being the best teacher we’ve ever had. We love you so much.

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

24 crazy hospital nights! Somebody bust us out of here!

 

I feel like I’ve been on a roller coaster of happy and sad today. Happiness came in the form of our dear friend and Tricia’s sister, Sarah, getting a nursing job at Mayo. Soooo proud of you Sar! It also came in the form of my beautiful cousin, Shannon, getting a full ride to USD. She is about to embark on the greatest journey of her young life. Happiness came in my Ronan and his beautiful spirits and smiles. Not even being cooped up in a hospital for over 3 weeks now can keep him down. Sadness came in many forms as well. Hearing about somebody from my home town having his sister murdered last night. I don’t know them well, but my heart still aches for them. Sadness is undeniable in the hospital. I gave my biggest smile to a teenaged girl who was walking the halls with her bald head and her newly amputated leg. She told me how cute Ronan was as she passed us on her crutches. I told her she was beautiful. Sadness also came in seeing my friend, Ellen today and the look on her face after her visit to Sloan this morning. Phoebe is still in a lot of pain and is going to have to have surgery on her leg again this Thursday. I’m sick to my stomach for them. It’s nothing too major, but my heart breaks for Phoebe who just wants to be a normal girl. My heart breaks for Ellen as a mama because I know what it’s like to see your child in pain and to feel so helpless. I am praying that this surgery will help to lessen Phoebe’s pain and she can just get on living her life already. She deserves a break.

I spent the entire day playing with Ronan. He has a lot of energy and this leaves me thinking that somebody is messing with us. How can his ANC still possibly be 0?? Ronan ran circles around me the entire day and was so happy. He is not the picture of a little boy who has 0 immunity. It’s beyond frustrating. Every morning at 4 a.m. they draw his CBC’s…. his blood counts. Every morning I wait for them to come in and tell me today is the day, his ANC is rising. No such luck yet. Every time they tell me they are at 0, my heart sinks. I will just keep hoping and praying that they come up this week. I want Ronan to be out of the hospital and to spend some time with Liam and Quinn. I want my baby to be able to go outside and breathe in the fresh air. I want him to have some kind of normal….. you know how I really feel???? I want to take him home. Home seems so far away. So far away that I cannot even picture getting to go back there anytime soon. I know we are in for the long haul here and I am fully capable of handling that. But when you have been stuck in the hospital for over 3 weeks now…. it makes the homesickness kick in extra hard. I don’t tell Ronan this though. I just keep putting on my bravest face for him and telling him we are working extra hard to get him better. He asks a lot of questions, like why we have to be at a hospital in New York. He wants to know why he can’t have his old doctors back and be in Phoenix. I just tell him because this New York is a magical city that is going to get him better. He usually just smiles and says he just wants Liam and Quinn here with him. It takes everything I have keep the smile on my face for him and to keep his mind occupied so we can focus on the happy things. I may be sad and sometimes I can’t hide it from Ro. But I try my hardest to control it if I can.

Ronan fell asleep not too long ago. I don’t think he’ll stay asleep for the entire night. If I know my little guy, he’ll wake up soon and be ready to play. Last night we didn’t fall asleep until 2 a.m. He kept telling me he wasn’t’ going to sleep because it was party time and he was too busy shaking his booty. He cracks me up like no other. Every morning we are bombarded by “The Team,” of doctors. It’s one doctor and about 10 residents. It is a little weird. It makes me feel like we are zoo animals on display. Ronan gets so pissed and overwhelmed by all the people staring at him, that he usually ends up screaming and hiding under his blanket. The doctor usually goes over what the plan is for the day and asks if I have any questions or concerns. Ronan won’t let the floor doctor (the one I wanted to kick in the balls) exam him. Good instincts, kid. He has become very fond of a girl resident though. After ” The Team,” leaves, she stays behind to exam him and talk to him. He actually answers her questions. She is young, pretty, and very gentle with Ronan. Today, when she was listening to his heart I looked at her and I said, “He really likes you.” I saw her eyes tear up and she goes, “I feel the same way.” She is going to be a very good doctor someday. Ronan already knows this too. It’s the reason that he is so receptive to her as she treats him like a normal little boy.

Ronan only slept for about an hour. He woke up and we were off for our next adventure. We spent a lot of time out of our room. We walked the halls for hours, played in the playroom and avoided the hot lava that was underneath our feet. As soon as we returned back to our room, a nurse came in to tell me that they wanted us to switch rooms. Our roommate had left earlier in the day and 2 girl patients were begin admitted and they needed the girls in the same room. I hesitated as we have already moved once and it was a total pain in the ass. I had to move all our stuff by myself while Ronan waited on the floor in the hall for me. I asked if I could see the room we were moving into first. The lady told me the number and I went to check it out. Good thing I did, because there was no way in hell I was moving into that room. It was the size of a shoebox, the boy and his parents had the heat turned up to about 90 degrees. FUCK THAT SHIT. I came back to our room, which is huge by the way, and told our nurse, Alex, that I didn’t mean to be a pain…. but there is no way I could move into that room without going crazy. I pleaded with her and told her we have been here for 24 days now… could she please she what she could do so we didn’t have to switch rooms. Alex came back a few minutes later and just said they would move the boy that was in that room, into our bigger room. Thank the lord. A tiny 90 degree room is something that would have totally thrown me over the edge. So no moving for us. We are staying put where we are.

It is 1 a.m. here and Ro is just now laying down to watch a movie. We are so excited for Woody and the boys’ to arrive tomorrow night. Cannot wait to see them and wrap my arms around them all. Being here alone is fine… it’s just hard because I am stuck in a hospital and cannot leave to go anywhere. Ronan wanted pizza from a place down the street today and thankfully, they delivered. He refuses to eat the hospital food so he has been living off of peanut butter and jelly sandwiches that I make him. The hospital food is actually pretty good… for hospital food. But there is something about the smell of it that ruins the appeal. Hospital food smells makes me gag. Ronan too. No clue where he gets that from 🙂

Time to get some shut eye. Maybe. Depending on if my little man says it’s time to go to sleep. He runs the roost around here for the most part. I’m o.k. with that. The more time I get to spend with him, the better. He is more mature than most grown adults and I’m happy to follow his lead. He’s going to be a great boyfriend to some lucky girl someday. A man that knows exactly what he wants. Kind of like his Daddy:)

I love you all so very much. G’nite to all of you lovely souls out there. Miss all of you back home so much. Kiss your babies and hug them extra tight for me tonight. Thank you for checking in with us. Sweet dreams.

xoxo

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

 

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

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

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

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

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

xoxo

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

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

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

I’m sorry my baby boy

 

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

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

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

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

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

xoxo

Hello New York. We’ve missed you….

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

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

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

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

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

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

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

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

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

xoxo

The knot

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

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

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

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

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

Sweet dreams, my lovelies.

xoxo