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

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10 Comments

  1. Richard R.

     /  March 21, 2011

    I recently came across an article regarding the effects of a substance called curcumin upon neuroblastoma cancer cells. The article is from the National Center for Biotechnology Information, which is affiliated with the National Institutes of Health.

    Here is the web address of the article:

    http://www.ncbi.nlm.nih.gov/pubmed/18383847

    In the article, it describes the results of an experiment conducted by researchers that indicate curcumin (also called ‘turmeric powder’) inhibits the NfkappaB protein complex in neuroblastoma cells. This inhibition of NfkappaB enables the cancer cells to undergo the process of apoptosis. Apoptosis is a chemical mechanism inside cells that causes the cancer cells to kill themselves. Turmeric powder is commonly used as a spice in Indian food. I think this is worth trying. I learned about your son through Charisma’s twitter. I am very sorry about your son’s condition. I hope this information is helpful.

    Richard

    Reply
  2. Nico

     /  March 21, 2011

    I read this entry and what remained with me the most is your boy hurting all over. I had a traumatic incident in early childhood, it wasn’t cancer, and the memory in my body recalls the hurt all over — it has a decade and a half for me to learn that this is a memory in my body. All I need in those moments is the mom in me holding me, soothing me, telling me it is going to be alright, telling me I understand, that, and holding me. You are so amazing. All your son needs is your live, pure and simple, involved, cuddling, holding, soothing, playing, being real and your heart energy heals him. I pray for him daily. I see him when I pray and surround him with the Buddhist prayers I chant. I envision my heart energy surrounding him and hugging him, hugging you. This is what I am able to do. Your touch, your love changes the neurons in each of his cells. You are an incredible mom. I wish I could remove all of the pain though know that your touch does that!!! With love, Nicole

    Reply
  3. cynthia

     /  March 21, 2011

    Do not leave him with anyone to even do laundry- at this time I sent my husbend to Target for any needs so I could keep her out of pain and keep a drip of Morphin going. Nurses get cranky and have long shifts. I went to the director of nurses at times to get a fresh person to care for her. It is your right to always be treated special. Everyone is special but you are in charge of his care, there are many around you whom has needs but his pain level is your right to keep low with the pain managment team. Breath deep pray and smile at him. It hurts, but he must see you strong.
    Drink and keep his nurtition up as well as you can. Bath him and keep him warm while doing so. Fresh clean, and pleasent music always playing low and happy. Disney channel on low or only the picture so he can focus on somthing else. Double up on things keeping a distraction, for his pain. Pray and sleep as much as possible.
    WE are praying with you.

    Reply
  4. Farrah

     /  March 22, 2011

    I am thinking and praying for Ronan and you all every day. Sending lots of love and prayers to New York!
    Farrah

    Reply
  5. Becky in Phoenix

     /  March 22, 2011

    I don’t even know you guys but think about you so often and pray for you. I am so sorry your sweet boy is going through all this. I am so sorry this has broken your heart a million times. You are amazingly strong and that same strong streak and spirit you speak of so much in Ronan, is also in you. I can see it and hear it, as clear as day. I will continue to pray for Ronan’s healing, for wise and caring doctors, and for you as a mother trying to keep it all together as you fight your way through this. You and Ronan will win. Love, Becky in PHX

    Reply
  6. Glenda

     /  March 22, 2011

    Praying that Ronan’s pain subsides. Stay strong and continue to fight for your lil man. He’s absolutely gorgeous. Those eyes! God Bless him.

    I continue to pray for Ronan’s healing and for your strength as a family.

    Reply
  7. Nikki

     /  March 22, 2011

    “Swift kick in the balls!” Ha you made me laugh so hard! I just love you!

    Reply
  8. thinking of you always

    Reply
  9. Maureen

     /  March 22, 2011

    I think of you often. My prayers for Ronan continue to flow. All the best to all of you.

    Reply
  10. Laura

     /  March 22, 2011

    We love you all and are so glad you are there together. Our thoughts and prayer are with your entire family.
    All our love!

    Reply

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