Day 2...and Hope.

So today was our first visit back to the hospital.  Our first appointment wasn't until 1130, so we got to sleep in a bit and have a relaxed morning, much welcome after yesterday.  We made the quick walk to the hospital, and made our way to pre-op, our first stop.

This was pretty low key and routine at this point, vitals and an exam, and a chat with the anesthesiologist, in regards to his normal response to anesthesia.  I am always amazed at how thoroughly they have reviewed every one of his past procedures, not missing the slightest thing.  They want nothing but the smoothest, easiest experience for him, and search for ways each time to improve his response to anesthesia and his recovery.  After discussing that, and paying a visit to the admitting office for the paperwork, we were cut loose with our instructions for the morning.  

Next stop was to Jacob's main physician, the interventional radiologist who has performed all of his sclerotherapy procedures in Boston and who will also be doing tomorrow's sclero.  He is always so thorough and kind, and explains this complex condition and the procedure so well.  He did a quick ultrasound there in the office, and showed us several of the open "channels" or lesions with active blood flow in Jacob's back that he can treat tomorrow.  He did show us areas of scar tissue as well.  With an ultrasound you cannot see much past the ribs, but he is hoping that those channels are still closed and that he won't have to do much work in Jacob's chest.  We hope so as well, as the recovery is much better if he doesn't have to treat that area. We did discuss the option of resection, but he still feels that the area is stable, with not too dangerous growth, so he thinks we can avoid that for now.  He also talked with our orthopedic specialist about the curvature and rotation of Jacob's spine, which is the main factor that would drive the need for more aggressive treatment.  They both feel that his spine looks the same as in March, when they compared the x-rays from then and now.  I understand that its no better, but no worse is good news.  That means that the treatment in March was successful in taking pressure off the spine and keeping the curvature the same, which is a level we can live with. It is hard for me, that curing this is not an option, and our physician reinterated that (albeit unintentionally) today, when he emphasized that all we can do is try to control the symptoms, or collateral damage from these lesions.  But I still am thankful for the options we have, and for this team dedicated to keeping my boy healthy and strong.  We all were in agreement that our current path is still the right one, and that what we are doing is keeping him well, so we will continue.  Our doctor said we will see how it goes tomorrow, but hopefullly this will buy him some more time before we have to look at more treatment.  We signed our consents, and headed out, agreeing to be back at 0630 in the morning. To the immediate right of the hospital is Harvard Medical School, which makes a nice photo op on our way to the subway. 

We took the T and headed back downtown to the New England Aquarium, a much anticipated trip for Jacob.  We were thankful for the Yawkey House which generously gave us the tickets, so Jacob could have some fun before his surgery.  We made it in time for the penguin feeding, and the diver show (Jacob's favorite).

He loved the petting tank as well. It was the least crowded we have ever seen it, so we really had a nice relaxing time. 

After that we took a quick walk through Fanueil Hall, did a little shopping at the Quincy Market, and headed towards the North End.  We were hoping for a smaller than usual line (its normally out the door and into the street), at Mike's Pastry.  The line was smallest we've ever seen! So we got some  cannolis and gelato, and ate them in the courtyard in front of the Old North Church (The church that  hung the lantern to warn the British were coming, and sent Paul Revere on his ride during the Revolutionary War).

We stopped one more time at the edge of the North End at a little greenway for a breath.  It was a beautiful spot and a beautiful evening.  

I had a lot of anxiety today, and in the previous weeks and months.  As always I am thankful for this place.  This city, its people, the hospital, and all who provide care there.  Tomorrow will be scary and hard and stressful.  But I will continue to cling to hope and light.  A dear friend gave me a bracelet of the moon just before I left.  You know Jacob has a thing for the moon.  On the back of the card attached to this bracelet, it said, "The moon is the friend of the night."  It is so fitting, as so often I feel enveloped in night fighting Jacob's condition.  I think that's why I had such a hard time turning my mind to this trip...for months we had been living blissfully in the light of day.  I didn't think about his condition.  I watched him run and play, swim and swing, and ride his bike all over our little 12 acres of paradise on the mountain.  I wanted to forget about the night, and the darkness that comes with it, that many times overcomes me.  But how is it, that when I fear the night, that I forget about the moon...this thing that so enamors my son, holds so much meaning for me.  That lights in the dark, is friend of the night.  That light is hope to me.  It will always look like hope.  There isn't a time I look up, or look out from the helicopter at work, see that moon, and not remember to hold onto hope. I have worn that bracelet since we left.  And in case it gets too dark, and I forget to see the hope it holds, I wear the other one as well, which my brother, Mitch gave me 3 years as a reminder to not let go of hope that sustains.  

Please pray tomorrow, my friends.  Surgery is at 8am, pray for peaceful hearts, and that my little boy won't be scared.  Pray for all who will touch and care for him, for clear eyes, steady hands, and sure minds for each one.  Pray specifically for his pain to be minimal. Pray for David and I as we walk beside him.  Pray the moon will shine on us tomorrow, lighting any darkness, with the hope of day soon returning.