One big day

What a big day today!

We spent the day at the hospital for 'Family Day'.  We spent the entire day listening to some of the top doctors in the Shwachman Diamond Syndrome Arena.

Our Hematologist, Dr. Shimamura was our host for the day.  She gave a great talk on SDS and some of the new research.  We then heard from a geneticist, a transplant specialist who I loved!  She has actually been working behind the scene for us.  Whenever the kids start a new treatment, the doctors visit with the transplant team to make sure we aren't doing anything that will cause any problems with transplant should we have to go down that road in the future.

There was also a GI specialist and a new Adult SDS Hematologist.  I was really excited to hear that Dr. Shimamura has teamed up with an Adult Hematologist to help transition her pediatric patients.  I was so relieved when I was able to visit with her and see that she has a wonderful bedside manner about her and that she is just as accessible as Dr. S has been and they will continue to work closely together on their SDS patients.  Her name is Dr. Keel.

Dr. Keel has a unique team put together.  She has all her adult SDS patients participate in a 'Coping Clinic'.  She works closely with a Neuro-Psychologist who helps young adults get through this difficult period of transitioning from pediatrics to adults.

My pen was going a hundred miles an hour as I took notes on all the talks and then wrote a million questions for the panel at the end of the day.  The kids kept making fun of me for monopolizing the Q&A time.

The other highlight was meeting 11 families who had SDS kids!  I got a little overwhelmed at one point.  It was surprising to me that most of the kids there were over age 15 so it was cool to see other kids who struggle with similar things my kids do!  I was glad to feel a small sense of belonging.  Like we were finally in a place where we were with people who understand what this road is like.  It was a room full of extremely amazing people; strength and courage!

There was one moment when a parent stood up to speak and her little girl started crying.  Dr. Shimamura left the panel and picked up the little girl and took her over to a big fish tank to entertain her.  When she needed to continue her talk, she continued to hold this little girl.  What kind of doctor would do this?  Not many if you ask me!  I was surprised that all but one of the doctors we met today were women.  They were all amazing, sensitive and smart!  We are really blessed and in good hands.

The transplant doctor reported that they are currently experiencing a 100% survival rate in SDS transplants!!!  That is totally amazing and gives me hope when I think of our unpredictable future. It was a great day, hard and tiring but great!

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Comments

  1. glad to hear you got some good and uplifting information!! Hope the rest of your time goes just as well!

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