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

Goodbye little eyelashes, until we meet again

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

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

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

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

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

xoxo

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

Dear Mama,

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

 

 

 

Empire State of Mind

 

I just spent the last 48 hours with Quinn and it was blissful. We woke up yesterday and I asked him what he wanted to do, as we had the whole day to spend together. He chose to go to The Empire State Building so we got ready for our adventure of the day. We stopped by Sloan before  as we went to say hello to my childhood friend, Jennifer, who came by to donate her platelets to Ronan. It was so nice to see her and introduce her to Quinn. We stayed for a little over an hour until she was ready to get started. We then headed out and grabbed a Taxi. It was a super busy Saturday there, as expected, but Quinn did so well and waited patiently to get to the top of the building. Once we were at the top, he was a little scared to go outside. It is so high up…. even made me a little nervous. I coaxed him into going outside and it was absolutely breathtaking. We stayed for a good hour and enjoyed the sights. Once we were safely back on the ground we hailed a cab and went and walked about SoHo and had dinner together. It was a perfect day with a perfect little boy. I bought him a journal at the Paul Frank store and he was so excited. He sat at dinner and wrote all about our day. It was adorable. After we finished dinner, we headed back to the RMH and then to the hospital to see Woody and Ronan. They opened up the playroom for us again so we could all hang out together. We stayed for about an hour and then Quinn and I returned home while Woody stayed at the hospital another night. I am so thankful that he spent so much time with Ronan while I had some one on one time with Quinn. The break from the hospital was nice as well.

This afternoon Quinn and I went to Delizia’s for his pizza (surprise, surprise) We ordered some to go for Woody and Ronan so we could bring it to them and let Quinn see Ronan before he and Woody got on their plane to go back to Phoenix. We spent some time in the playroom together and soon it was time for Wood and Quinn to leave. I tried to not cry but it was impossible with seeing how sad Ronan was. His little lip quivered and he buried his head in his knees. We said our goodbyes and I walked back with Ronan to his room. I sat and held him and quietly explained how Quinn and Dad would be back soon. My words didn’t matter or stop his little tears from falling. I let him cry and told him it was o.k. to be sad but it was my job to make him feel better. After he settled down, I talked him into taking a sponge bath. I filled up a tub of water and he ended up putting all of his Star Wars guys in it to bathe them before he took his bath. This occupied him for a good hour. We spent all the afternoon doing silly things like that and he finally laid down to take a little rest. He seems to be feeling better but his ANC is still at 0. Boo.

While Ronan was napping, my phone rang with a number I did not know, but I picked it up anyway. So happy I did. It was my sweet Charisma calling all the way from Australia where she is working. I was so surprised to hear her voice and so happy she called. She hasn’t been able to read my blog in a few days and just wanted an update and to see how we were doing. I updated her on some things and vise versa. She asked what our plan was and I told her that as of now, it was impossible to have one. We will have more of a plan once the results of Ronan’s scans on the 13 and 14th of April, come back. We will then decide what direction to move forward with all of this. Until then, we will just sit and wait and take things day by day. We will make the best out of each day that we have and take all the positives that we can get. It was good to talk to my friend and I told her to try to get some work in NYC so she could come and visit us. I miss her dearly.

My mom is taking the Red-Eye out tonight and arrives at 6 a.m. EST. I told her to just go to the RMH, get some rest, and we would call her when we got up so she can head over to the hospital. We can’t wait to see her and it will be so nice to have her here and her help. Now, if we could just get out of this hospital. I think we’ve been here for almost 2 weeks now…. without counting our 24 hours of freedom we had. Praying for his ANC to come up, very, very, soon. This hospital life is getting old for everybody… especially my little man.

For everyone who has been asking where you can mail things to I will give you the address to the RMH. It is

405 East 73rd Street, New York, NY 10021

Just address it to Woody, Maya or Ronan Thompson. You all are the sweetest friends/little rockstar fans/family. Thank you for all the well wishes, cards, and surprises you have sent us. Brings many smiles to our faces. I hope you had a lovely weekend. I’m going to cuddle up with my little bug now and try to get some sleep with him. Love to you all!!

xoxo