Thank you Lulu Lemon girl

Ronan. Everyday without you is stranger and stranger. I am trying to keep super busy, but I am really just existing. Somebody asked me how I was today. I said I was existing so that was better than nothing. I’ve stopped saying I’m fine because I’m not. And I know you know I’m not and you are o.k. with that. Maybe someday I will be o.k.; but as of now , everything is a freaking nightmare. I keep thinking I forgot you at the grocery store or something. I remember feeling this way when you were alive, and if I had dropped you off at school for a few hours. I would go about running my errands and panic because I thought I had left you somewhere when you were really just at preschool. That is how little I was used to be without you. I would give anything to have just left you somewhere now; as awful as that would have been. In the grand scheme of things it would be a whole lot better than this.

Today, I took Liam and Quinn to school. Late. They have been tired lately. Staying up a little too late with us. As of now, Quinn is in my bed with me and is just now falling asleep. He is stuck to me like glue. I don’t blame him…. the poor little guy didn’t want to go to school today. I had a talk with him and told him I would talk to his teacher and if he wanted he could come home later. I think the distraction of school is good for your brothers minds right now. I know I am going to have to get them some counseling. I am meeting with someone Thursday morning to see if she will be the right fit for our family. I cannot tackle this alone. I need some help with my two little guys. As strong as we are as a family, this is all too much for your daddy and I to fully handle. An outside source will be something we will embrace for as long as we need to with your brothers. They need someone else to talk to besides us and someone who has experience in helping out with things like this.

After I dropped of your brother I ran some more “let’s keep you totally busy,” errands. I ran over to The Biltmore to return some running shorts that your daddy had gotten me for mother’s day as they were too big. As soon as I walked in, I was greeted by a bubbly blond girl. She didn’t give me the standard greeting but instead goes, “Heeeeey girl!” I just smiled and said hello. I went about my business and got the things I needed. She met me at the cash register. She asked me what I was out doing and I just quietly told her I was running errands. She then goes, “Oh, getting shit done?” OMG. Who is this girl and how can I be her friend? She totally cracked me up today when nothing is making me laugh. I thought to myself, is this really happening? Did the LuLu Lemon girl really just tell me I was getting shit done?? She did and made my day. As she handed me my receipt, I grabbed one of you F U Cancer bracelets out of my purse and gave it to her. I told her to look you up. She was totally worthy of one of your bracelets. If only more people in the world could be so candid and real. I LOVE REAL PEOPLE. So thanks, LuLu Lemon girl. You made a very sad girl, giggle on the inside the entire day today. It felt nice.

I did a really good job of keeping myself busy. I was only home alone for about 30 minutes and it wasn’t bad. My friend, Melissa dropped by and I had her drive me up to Echo Canyon so I could get in a hike. What is this weather, Ronan Baby? I know you are responsible for it because never in all the time that I have lived here, have I experienced a May quite like this. It has been so gorgeous and almost cool. I hiked as fast and hard as I could today. When I got to the last part, I was starting to get tired. The wind literally picked up and I felt like it was pushing me up the rest of the way. I know it was you. I sat at the top for a long time and enjoyed the sun. It was almost the perfect day except you aren’t here. I guess I’d better get used to those almost perfect days as I know I will have them for the rest of my life. I ran back down the hill to our house. I looked for you in our front window and so expected you to be waiting for me right at the front door like you always used to do when I would hike. You were always so anxious for me to get back to you. It was like a slap in the face today when I returned and you were not here. I slap in the face that I will never get used to and I will never accept. Because all of this is fucking unacceptable.

Tonight, we went out to Tarbell’s for Uncle Jay’s birthday dinner. We went with Jay, Charlene, Lindsey and Mark. It felt weird to be out, but all of those people are family so it was comfortable. It was important to us to celebrate your Uncle Jay as he has been such a good friend to us for so many years. It was a quiet dinner and the food was as usual, nothing but amazing. I ate a bit for you and even had some of the amazing deserts that Mark sent out for us. It was a nice night but we kind of had to hurry home due to Quinny waiting for us. We were on the clock and he called me twice to see where we were. My heartstrings tugged for him, so we ate our dinner, went back to Uncle Jay’s for about 15 minutes and sat outside. We then went home and now here we are. All snug as bugs in a rug. Tired. But restless. I am so very restless all day everyday. I’ve got to find something productive to do with all of this energy. I know you will help me figure it out. Mr. Sparkly Eyes told me he thinks I need to just take a couple of months to regroup and not do anything. I told him, I knew he was going to say that, but I don’t know if that is something I can do. I have done nothing for the past 8 months, 24 hours a day, 7 days a week, but fight for you. And now what? All is expected to be peaceful and calm? When I have  gotten so used to is going, going, going, fighting, fighting, fighting. I know he is probably right, but I don’t know if I am capable of this calmness that he wants me to embrace. I explained to him that I feel like a brand new mom, with my first born baby. Stumbling, lost, scared, worried, with a ton of adrenaline. Except now I am a brand new mom, to a dead child. How the fuck do you figure out what to do with that? Not a clue. I’m just doing the best I can which is not hiding in bed all day and taking care of my twins. As of now, that is all I can handle.

That is all for tonight my sweet baby boy and lovely peeps. Ambien induced sleep coming my way as that is the ONLY way I sleep now. Love you all to the moon and back.

xoxo

This is the tattoo I got in New York. I had “This too shall pass,” with one baby star. The other night, I had 2 more baby stars added for Liam and Quinn. So now I have all my boys with me all the time. 🙂 The stars are in purple. Club tattoo did a great job:)

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

Sad to leave, but have to go

The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.

Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.

I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!

Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.

I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.

Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!

Goodnight world. Thanks for all of your love and support!!!

xoxo

What a day!

What a day! So glad it is O.V.E.R! Our usual Thursday morning started out by heading over to the clinic, with our Mimi Kay in tow. Ronan seemed like he was in a good mood, until we pulled up and I think that he remembered that it was Thursday, which means Broviac dressing changing day. Holy tantrum! I had to pry him out of the car and he proceeded to kick, scream, arch his back, and cry. He is so strong that I can barely contain him anymore. I was trying to hold him to carry him into the clinic and it took a good 10 minutes outside to even pick him up. He ripped my favorite good luck necklace off, my gold four leaf clover that Woody got me for my birthday last year. Ripped it right off my neck like he was the Incredible Hulk or something. I finally got him picked up and into the clinic but he was still screaming and trying to run away. I took him out into the common area, where the coffee lady is and held him in my lap at the table. He was still kicking and hitting me. I finally broke down and started crying and this is the only thing that ever gets his attention and makes him stop. I cried and did my usual whispering in his ear and he just watched me and soon snuggled up to my neck and settled down. Finally. It was a hard morning. Thank god I had Mimi there to help me carry my stuff and help with his dressing change. His blood levels and ANC counts are still good so he did not need a blood transfusion today which is always a plus. We were able to get out of there fairly quickly. I thought Ronan was getting used to all of this but it is days like today, that I know he is not. I never know what or who I am going to get with him. It is the worst pain in the world to see your baby suffer and hurt. It is beyond emotionally draining and physically exhausting. After we were finished there, Mimi, Papa, and Kathy took Ronan home for me and I went off to see my therapist.I needed it…. my nerves were shot after that visit. We had a good chat and I have started working on some breathing techniques to help calm myself down during the day when I am feeling anxiety. We also talked about things I can do at night to help my mind wander to sleep. I’ll try anything at this point… well, except sleeping medication. Just not going to go there.

After my appointment I met my sweet friends, Jen, Trish, Bethany, and Niki for a nice girls lunch. We had a little pow wow about some things that are in the works for Ronan’s Foundation and Pediatric Cancer in general. I’m telling you, these are the kind of girls you want on your side. Very genuine, smart, honest girls. I felt so lucky to be sitting in the middle of all of them<3 I am very excited about the things we have in store. We are going to turn this into something very beautiful and positive. I will never give up on my vision or hope for all of this. When Ronan is well, it is something I will devote my life to. Right now, I am just going to have to take baby steps to get to where I want this to go. I’m o.k. with that. Baby steps are steps in the right direction.

After lunch I ran a couple of errands and went to pick up Liam and Quinn from school. Such a treat for me. There is nothing I love more than seeing their faces light up when they see that I am there to pick them up from school. It has always been one of  my favorite things, but now it means so much more to me because I am often not able to do it. They were very happy and excited to tell me all about their day. I love that they are doing so well in school and seem to enjoy it so much. One less thing I have to worry about.

Mimi, Papa, and Kathy stayed all day and for part of the evening tonight so Wood and I could go grab dinner. We went to Chelsea’s for a quick bite. It was nice to be out alone with him. We talked a lot about New York and our plan and have the dates pretty much finalized. Woody will take me out there and when he is not there, Mimi Kay will stay with me. Karen, Tricia, and Sarah have all offered to come out during part of the time too and I just may take them up on that. I’ve got a couple of people out there that I know so hoping to connect with them as well. The more support we have, the better. It’s going to be quite a journey.. I am going to have to gather all of my strength to get him though this next chapter.

That’s all for tonight. Very tired, hoping for some peaceful sleep without nightmares. Goodnight, friends. <3