Hilton Head was absolutely wonderful – good for all of our souls.  The boys made quite a commotion the first time they went out to the beach and saw the ocean.  Everyone in their near vicinity got to share in the excitement.  Justy was fearless and ran right into the water.  Jacob was a bit more reserved about the ocean but warmed up to it as a little time passed.

The first adventure took place when Brian and I decided to take the boys out for a float in Aunt Rebecca’s blow up boat.  We were all smiling and laughing and joking until the big wave crashed the boat over and sent the boys flying into the water.  Both boys got their first taste of salt water.  Once we had them safely in our arms the laughing and joking resumed, but I’ll confess it was pretty scary for a moment.  Jacob and Justice thought it was the greatest thing and quickly declared it their favorite moment of the day.

The boys truly enjoyed hanging out with Grandma and Grandpa Brown, Aunt B and Uncle Steve and of course, Aunt Rebecca!  Brian and I had an incredible time too.  I LOVED seeing the boys play in the sand, jump in the waves, dance on the beach and just be so lost in the joy of the moment. 

This vacation was just what we all needed before embarking on the new photopheresis therapy journey, which actually started yesterday afternoon.  I’d like to report that everything went smoothly, but really it was a bit of a bumpy beginning. We had a three hour or so delay because of issues with the other patient they were treating in the morning with the machine.  We got some bad news that they could not leave the photopheresis needle in Jacob’s port and would have to re-access him each day (this means 4 needle sticks a week instead of one.)  We also learned that the photopheresis needle was a lot larger and longer than the one we normally use for regular infusions.  Jacob had a real hard time with this and so we had to have 3 nurses hold him down during access and another stick the needle in.  He was a pretty unhappy camper.  When we finally got moved to the infusion room and he got hooked up to the machine to take his blood out his line kept occluding.  Even with an anticoagulant going in his line, the blood kept clotting.  The nurse had to manually pull the blood out of the port 10mls at a time.  It took forever.  In a normal course of treatment, the machine withdraws three rounds of blood and separates the white cells out (these are the cells that actually receive the light treatment) each round.  Because of the clotting we were only able to do one round, meaning only one third of the targeted white cells got treated.  It was a long, long day for us and for the nurses.  We all left tired but with hopeful spirits that Friday’s treatment would go much better.

Today we arrived at the hospital in the morning for Jacob to get his normal infusions.  He didn’t even cry when his port was accessed.  It was a much more laid back day and everything went well.  After his last infusion they put a special drug in his port that should help with the blood clotting for tomorrow’s treatment.

After a quick stop back at the hotel, Jacob and I set off for an adventure to the Newport Aquarium.  It was amazing.  Jacob loved every second of it and frankly, I did too.  We had sharks and stingrays swim over our heads.  We saw an octopus, alligators, sea turtles, jellies and penguins.  Of course, Jacob’s absolutely favorite thing was seeing the big green moray eel.   The aquarium wasn’t crowded at all and we had a delightful time.

Tomorrow it's back to the hospital at 1:00pm for the second round of photopheresis and then head for home.  Jacob and I have been staying at the Hannaford Suites Hotel and having a great time, but we both look forward to hanging with daddy and cubby for the weekend before we start it all again next week.  It seems like the 3 times a week schedule may last more like 5 weeks as opposed to 2 weeks like originally planned.  We’ll see.  Brian will be out of school in a few weeks and that will make the logistics a lot easier.  Sincere thanks for everyone pitching in to watch Justy these two weeks and to generous friends for covering the costs of our hotel stays.  Thank you all for your faithful prayers and support.  We are blessed abundantly.