Thursday, July 3, 2008

And We're Back...

Mission accomplished. We had a fantastic trip. There is so much I want to say and share about this trip I really do not know where to start.

Sam - Sam did really really well in the car going and coming. He slept well for the most part and was in pretty good spirits for most of the trip.

Jeff - First of all I was humbled by the selflessness and kindness of our brother-in-law, Jeff, to take time out of his extremely busy work schedule to drive us down to NC. I thought for sure Scott and I would be fine going on our own, but Sam is a difficult baby to care for and requires a lot of hands. It would have been very stressful and difficult had Jeff not come. Jeff also happens to be an excellent driver. I am not the best passenger and get very nervous if anyone other than myself is driving. I have to say I was not the slightest bit nervous.

Scott - Scott had the difficult task of sitting in the back the entire time to care for Sam and he did an amazing job keeping Sam calm, safe and happy.

Me - And me... well I just did what I do best and that was taking care of everyone in the car... I played DJ, feeder, unwrapper, cleaner, trash person, entertainer, holder, etc... You know, its not easy being this perfect and wonderful.



NC - North Carolina is beautiful! The people are so friendly. I definitely understated that. The people are soooooooooooooooo friendly and kind and helpful. You couldn't help but smile all of the time no matter what else was going on in your head. We went to Duke University's campus which was gorgeous. Its a very nice place to visit.

The hospital - Duke Children's is a beautiful, warm and friendly place. We entered the hospital and had to go to the fourth floor. Scott and I started crying the second we walked through the door. I wasn't really sure why I was crying as I usually don't. Scott on the other hand cries if the wind blows in the wrong direction. He is very sensitive. We get up to the fourth floor and immediately we can see how sick the children are here. I got an overwhelming feeling of guilt. I know Sam deserves the world, but the truth is Sam is a stable healthy little boy. This procedure is not life and death for Sam. But for these other children it is. I couldn't help but think that we were possibly taking the spot of a child that needed stem cells more than Sam. It was very difficult for me to contend with this issue. As Scott and I sat in the waiting room we couldn't help but see a beautiful little girl probably about 8 or 9. She was totally bald and sitting next to her was her mother who had obviously shaved her head for her daughter. I was completely moved by this. I had to get up and walk away because I started crying again. When I thought of children with cancer in the past I always focused on the physical pain they must feel or the emotional pain of possibly not being able to live a long healthy life. I never thought for a second that a child might feel embarrassed or ashamed about their physical appearance. An adult maybe but never thought of a child in that regard. I continued to glance nonchalantly at this mother and daughter. You had to see the pain in this mother's eyes. Pain that is somewhat familiar to me. When her daughter looked at her, her eyes were bright and full of happiness, but the second her daughter focused on something else the mother just went back to her blank stare, so full of fear and emptiness.

Appointment 1 - The first appointment at Duke consisted of a typical check up, height, weight, history, blood work, etc... Ahh the blood work... Sam is a difficult stick. We usually have to go hunting for a NICU nurse to get bloods or insert an IV for Sam. His veins collapse very easily. Luckily they only had to stick him twice. After the first try they decided not to take any chances so they grabbed the best blood lab tech they had and sure enough we got our bloods. After the blood work we were sent on our way with an appointment to come back for the infusion the following day at 1pm. I was so impressed with how organized, sweet, and competent all of the staff working there was. Everyone from the receptionists to the doctors. I am embarrassed to say that you do not find that hospitality here in NY.

Appointment 2 - At 1pm we made our way back up to the fourth floor. They took us to the back immediately and put us in our own glass walled room in the out-patient hospital unit. Sam was the only healthy child there. Most of the children in this area were hooked up to IVs getting treatments. We were there from 1pm to 7:15pm. It took us 3 tries to get a vein for Sam. Finally, after the third try they got one in his foot. That was the most nerve wracking part of the day, then everything went very smoothly. Sam got his cells and then he was flushed with IV fluids and that was that.

June Allison If it weren't for June then appointments 1 & 2 would not have happened. June is an incredible person with the most delicious southern accent imaginable. She is Dr. Kurtzberg's nurse practitioner. I think Scott must have spoken with her about 1,000 times at least. She never seemed the slightest bit annoyed. If anything she was just so happy to get us down there. We really have a lot to thank June for.



Dr. Joanne Kurtzberg - Talk about a humbling experience. I am afraid to even write anything about this amazing women as I am not worthy to even pretend to understand a millionth of what she does. Dr. Kurtzberg is one of if not THE leading physician in stem cell research. She has already found cures and treatments using stem cells to fight all sorts of metabolic and systemic diseases. Dr. Kurtzberg is just as sweet and warm as everyone else we met in North Carolina. I couldn't believe how human and normal she was. Most doctors, especially world renowned doctors can be pretty arrogant and nasty. This women could have been Sam's aunt or our neighbor or something. She was kind and considerate. She answered all of our questions. Scott had brought her chocolate from a very good chocolatiere in NY. You had to see how this women lit up at the site of dark chocolate. We really liked her and her assistant June very much. We are so grateful that Sam had the opportunity to get an appointment. Stem cell re-infusion for children with CP is a very small fraction of what Dr. Kurtzberg does. Most of her patients are very ill and are getting infused with donor cells for life saving purposes. I think Sam may have been the 26th or 27th patient with CP to receive stem cell re infusion.



Thank you all so much for all of your thoughts and prayers they certainly worked. I know we don't get to call or write everyone as much as we would like but we are so excited and happy to hear from everyone always. We think of all of our family and friends all of the time and we certainly feel all of the positive energy everyone sends our way. All of your love goes such a long way. We feel it believe me. We could not run this marathon everyday if we did not have all of the support from our family and friends.

9 comments:

Anonymous said...

I just received a google alert for Dr. Kurtzberg and it brought me to your site.
I am so happy that Sam was able to receive the stem cell infusion. I wish him well with his new cells and pray they will quickly begin working.
Dr. Kurtzberg treated my daughter, Ashleigh. We know first hand how wonderful they are at Duke, her staff, June and Dr. K. I too, was amazed by how down to earth and caring they all are.
Anyway, I will keep you all in my thoughts and prayers.

With HOPE,
Michelle
www.caringbridge.org/nj/ashleigh.ryann
username: ashleigh1115
password: ashleigh1129

Anonymous said...

Great to hear you’re back home. We hope that the cells infusion will soon show its results.
Hug & Kiss the little man for us.
Love
Irit

Joe and Leanna said...

This is SO awesome! I pray that you quickly see improvements for sweet Sam.

Leanna

Anonymous said...

i hope and prayer
that sam's journey
will lead to
improvement everyday
as always- you are in
in our thoughts
we hope to get to
see ya all soon
love always
aunt maddy

Anonymous said...

Scott better hope his Bar Mitzvah money saved under his bed will be enough to pay for Sam when he attends Duke University in 16 years! It was great seeing you on Friday. Sam looked great and I think he had a great time at the party.

Eric

Anonymous said...

We're so happy you are home and everything went well! reading the blog was one of the first things i did this morning1 Always thinking of you...

love
ali

kristi said...

I am glad the trip went well I am wishing the best for you and your family!

Debbie said...

It's so great to hear that your experience all-around was positive. As I mentioned to you, Nestor and I felt like Robert DeNiro in "Goodfellas" when Joe Pesci's character was about to be made -- "one of our own!"

We love you guys and can't wait to see you. And now we know that Sam travels well -- so we'll be seeing you upstate.

Anonymous said...

I am so glad that you guys are back and all went well. I was thinking about you all week. I hope and pray that this treatment will do wonders for Sam. I am also glad you liked NC so much- we are going to become residents there soon ourselves. I'll keep you posted. All of my love and prayers.

deb