A run and some Sookie Sookie time

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

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

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

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

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

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

xoxo

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

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

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

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

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

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

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

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

xoxo