Blowing kisses to the heavens above

Today, was a great day. Woody worked for a few hours and I took care of Ronan. We spent the day getting him to do normal things like walk around, pee, and drink. He is in a lot of pain; even though he won’t really tell us. He has such a high pain tolerance, but I can tell by the look in his eyes that he is hurting. We are working on getting his lungs to function as well as they are supposed to be. This means he is doing treatments like blowing bubbles and blowing into a little machine for us. He is wiped out from today and his demeanor has been very serious and business like. He knows he has a job to do.

After Woody was finished working, he came back to Sloan. Dr. Kusher stopped by for a visit and I have totally fallen in love with that man. (Not really, but you get what I am saying) First of all, to say the man is a genius is an understatment. Not only is he brilliant, caring, funny, and nice… he also really cares about his patients their parents. He stood and talked with Woody for a good 30 minutes about Ronan and he is elated at the way he is responding to treatment. He told us that Sloan is always an open door to us should we choose to come back her for radiation or whatever else. I talked to him a little bit about running. He runs in Central Park every morning. A.M.A.Z.I.N.G. Woody asked questions and Dr. Kusher gave him an answer to everything. He also said we could take Ronan home this weekend since he is doing so well and do Round 6 of chemo at PCH. We have decided to just stay here and finish it. I want to make sure Ronan is totally healed before heading back to AZ and taking him home on Saturday, just to check him in to PCH for Round 6 just does not make much sense. We may as well just stay here and get it over with so that way, when Ronan can go home, he can actually stay home for awhile.

After Dr. Kusher left, I ran out to go back to RMH. I put on my running clothes and ran to Central Park in the dark (sorry Marisa… stop with the panic attacks;) I got in about 8 miles. Tonight, while I was running I felt like such a weight had been lifted off of my shoulders. I looked up at the sky, said thank you and blew kisses to the heavens above. It was the most gorgeous run. To be in the middle of a park, surrounded by beautiful buildings and lights in the distance; and for such a busy city, my run was so quiet and peaceful. It was heaven on earth tonight. I am going to miss New York so much. This city has been such a positive experience for all of us; I feel like a new person and I know Ronan does as well.

After I ran I went back to RMH, showered and packed my bag for the night. Ro is asleep and Woo is playing on his laptop. I am going to snuggle up to my hubby now and watch a movie. What a perfect way to end this perfect day.

6 thoughts on “Blowing kisses to the heavens above”

  1. It is our privilege to have learned of such an incredible story just from getting our water! Thank you for taking the time (and strength!) to share it Maya. Sending healing blessings your way Ronan – keep rockin’ it!

  2. I am so glad for all things good going your family’s way. Thank God. (I, along with all of us, DO worry about you running in the park at night!). Could you at least have a buddy system – someone to run with you? We all want you safe and able to continue with all of Ronan’s healing. (hugs).

  3. I am happy you are happy!!! What is the next step after chemo? I am just curious….. I love how updated you have kept your blog. I know we do not know eachother well but know that I shed a few tears almost everytime I read this blog whether it’s in sadness or happiness for your triumps! I am happy that lately it’s all been triumps ๐Ÿ™‚ I truely love you guys through this. You have deffinetely captured a peice of my heart that will forever be yours………

  4. I’m so glad you had such a nice day — you all deserved it, that’s for sure! Will Ronan be hospitalized for the chemo, or will he get to go out and see parts of my very favorite city in the world? Although I don’t run, thouse long dark runs in Central Park sound like heaven to me. Anyway, while you stay for Ronan’s final chemo, I hope you all have some chances to get out and enjoy the city, especially when your Mom is there! Love, Sue
    P.S. No, we’ve never met, and I’m a friend of your Mom and Jim. I’m hoping that Ronan will be well enough to visit Longview this summer, and that I’ll get a chance to meet the Rockstar!

  5. So glad to hear the progress of your Rockstar Ro! He looks really good in those pictures. For being just a few days post-op, I can’t remember my niece looking as good as Ronan! That is wonderful!! Dr. Kushner was also one of Alexa’s Doctors when she recvd her antibodies treatment up there. He IS an awesome doctor….and you are in amazing hands, when it comes to treating Neuroblastoma—at Sloan. NYC is the city that never sleeps and it seems like you are sensing that “buzz” you can only get in that town!! ๐Ÿ™‚ I miss it– (also, I use to be a flight attendant for Delta and traveled there all the time!)

    I pray that you be very careful during those late night runs in central park. I think many of us here reading, get those same feelings of wanting you to be cautious and safe!! ๐Ÿ™‚ Just wanted to drop you a note to remind you that you are in our prayers constantly. Much love, from the Ledford family in Atlanta GA.

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