Day: January 5, 2011

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.

Aubrey’s story. Simply amazing.

If this doesn’t inspire you to get up and do something, nothing will. It’s time to change the world, people!!!

Aubrey was just four when she was diagnosed with acute lymphoblastic leukemia, a disease that was once fatal for nine out of ten children.

“My first doctor was the head oncologist at a local hospital who spent one day a week studying at Sloan-Kettering and the other four days of the week practicing what he learned in his community,” Aubrey explained. It was the transfer of knowledge from MSKCC’s research lab to her bedside that saved the young girl’s life.

Aubrey battled cancer for seven years, enduring round after round of chemotherapy treatments at Memorial Sloan-Kettering. Finally, at age 17, she was declared to be in full remission. “I was one of the lucky ones,” she said.

Aubrey went to college and began running to take a break from her studies. In 1992 she ran the Boston Marathon and became instantly hooked. “The first time I did Boston I ran unofficially, without a number,” Aubrey said. “I decided to run the New York City Marathon in order to qualify for Boston the following year.”

When Aubrey signed up for NYC, she received a mailing from Fred Lebow, president of the New York Road Runners and co-founder of the marathon, asking runners to collect sponsor donations to benefit cancer research at Memorial Sloan-Kettering.

“When I first received the letter from Fred, I was so deeply touched,” she said. “I got a nice little bundle together that first year — about $1,500.” Within three years, the marathon program had reached its goal and raised enough to establish the Fred Lebow Chair in Neuro-Oncology.

Until that time, Aubrey had not talked about her own experience with cancer, but Fred Lebow inspired her to share her story. “I want people to hear about Memorial Sloan-Kettering and my success so they can understand the potential for success with other people. The results of their gifts then seem more tangible and meaningful. Talking about cancer is emotional, but in this context, it is positive and not sad.”

In 1997, The Aubrey Fund for Pediatric Cancer Research was established in her name.

Aubrey has run 27 marathons with Fred’s Team, raising more than $500,000, and has seen the program blossom year after year. She invests a lot of time interacting with fellow runners, and her entire family volunteers to help out on marathon weekends. “The progress that’s made in cancer research through gifts made to Fred’s Team will save lives,” she said. “Memorial Sloan-Kettering offers the best cancer care there is.”

Day 1, Post Op

We have been back at Sloan since yesterday. Dr. Angel (La Quaglia) came by yesterday and was blown away that Ronan was already out of the Picu. Dr. Kusher, whom is one of the Neuroblastoma Doctors here, came by as well. He has been the one from the beginning whom has been talking to Woody since the day of Ronan’s diagnoses. I was thrilled to finally meet him and he could not have been nicer. We talked about Ronan and he too kept saying how pleased he was with how well everything went and how great Ronan looked. I asked him about the NYC marathon because I had heard he runs it every year here. He runs for a charity called Fred’s Team. Here is a bit about it below.

Imagine a World Without Cancer

Fred’s Team was named in honor of running legend and co-founder of the New York City Marathon, Fred Lebow — a man who dared to dream of a world without cancer.

While being treated at Memorial Sloan-Kettering in 1991, Fred never stopped running. As he jogged down the hospital hallways, he was inspired by the hope he saw in the faces of the pediatric patients he passed and became determined to run to raise money for a cure.

Fred ran his last New York City Marathon the following year, enlisting sponsor donations to support research at MSKCC. He also wrote to other marathoners and encouraged them to do the same. “Running the marathon is the best way I know to fight this disease,” he said.

Fred’s Team became official in 1995, and since then thousands of members — experienced athletes and novices alike — have joined the race against cancer. The team has grown and the race calendar has expanded beyond New York City to events worldwide, but the goal remains the same: to fund research that brings us closer to a world without cancer.

I’m coming back here to run the Marathon for Fred’s Team next year. And you all are invited to come along with me. Dr. Kushser was telling me how at mile 16, a ton of his cancer patients are there waiting for him. How amazing is that?? What an inspiration.

Last night went really well. I slept with Ronan and Woody slept on the pull out bed at the hospital with us. Ronan slept really well and of course in the morning when I woke up, I noticed that his NG Tube (Nasogastric tube) which went all the way down into his stomach in order to drain his stomach contents via the tube, was gone, pulled out, and laying by his side. That little pistol, he must have been working on it all night while I was asleep and pulled it completely out. He was so mad about it all yesterday. Woody freaked out, I laughed, and called the nurse. She asked the doctor and he said it was o.k. because they were going to take it out anyway today. Ronan just beat them to the punch:) The other thing he was so mad about yesterday was the fact that he woke up with a diaper on. Forget that he has a 6 inch incision on the side of his stomach, forget that he had a breathing tube shoved down his throat, he could not have been madder about the diaper. He is so independently proud and has been potty trained since such an early age and is always talking about how he is not a baby, because he does not wear a diaper. What a blow to his little ego;) I got them to take him off of him and he was much happier.

Today, we have been working on getting him up and moving to get his lungs working as best as possible. He is saying he can’t do it because everything hurts but then he insists on getting down from the bed alone and when I told him we were walking down the hallway he told me he couldn’t but then he practically sprinted down to the door and back. This kid, I swear, has such a fire in his soul. I have never met a stronger person in my life and he is only 3! Imagine what he is going to be like as a teenager!

One of my dear friends, Olivia, gave me such a beautiful gift today and I am sharing it with all of you. She wrote a poem for us and it brought tears to my eyes. She is such an amazing friend and is has such a pure heart and soul. Love you, Liv.

From the first flitter and flutter
He gave you to me; destined to be your mother
Never thought it would be a tough road to travel
Sometimes I want to crumble and unravel

I would gladly do anything to take your place
I see so much love and healing while looking at your beautiful face
I want to be strong for you; a mother is supposed to be tougher
But it hurts me so deep inside when I have to watch you suffer

You are a true love, so sweet and pure
Anything for you, even this, I will endure
Always by your side; every night and every day
This too shall pass, so they say

So, we will keep going through this hell
Pain and sadness is hard, but we won’t dwell
You have so much to offer; the greatest story to share
We’ll conquer the world; giving a reason to be aware

I will make sure this journey has not been in vain
We will make a difference, help to ease others pain
There is a reason for this that is greater than me and you
We will see this through and start our lives anew

From the first flitter and flutter
He gave you to me; destined to be your mother
The road has been happy, sad, and full of joy
A love to stand the ages; a story of a Mama and her boy

I wish I could post the pictures of Ro on here for you all so you could see how beautiful he looks, even though he’s just been through a major battle. I don’t have my adapter at the hospital, but I will try to get it tonight. Woody is working and as soon as he comes back I am going to sneak out for a run. Wood leaves tomorrow, but Tricia comes here on Thursday or Friday 🙂 CANNOT WAIT TO SEE MY BESTIE!!!! My mom is also coming in Friday or Saturday I think… I can’t wait!!!! Woody is returning back to AZ to handle some work things then he will be back here for my birthday on the 11th. The doctors are saying we should be able to go back home around the 17th of January. So excited for that but will be a little sad to leave here. New York has been such a positive experience and I will miss it dearly. But there will be nothing better then getting back to our home, the twins, my friends, and our dear nurses and Doctors at PCH. HI KRISTEN if you are reading this!! We miss you! Please give Sharon and Eileen the BIGGEST hug from Ronan. We can’t wait to see you all!!!

Also, wanted to say a big thank you to my boys’ teacher at Hopi, who has been keeping a special eye on my two little guys. Thank you so much, Cindy. You have no idea how thankful I am for you and how much you love Liam and Quinn and are taking extra special care of them for me while I am away. You are so much than just a teacher to us!!

Hope you all are having a beautiful day! I will try to check in later!

xoxo