Ready to go home...and bringing something back...

Well, we were supposed to have gone home 2 days ago, but because of Jacob's extended post-op hospital stay, and then the weather, we are still here in Boston.  We have pretty much stayed in the Inn all weekend to let Jacob recuperate.  He is doing well, but still requiring regular doses of pain medicine.  He always wakes up hurting as well, which hopefully will get better in the coming days. Though not quite completely himself yet, he is getting there.  We were not prepared for such a difficult recovery, because last time, Jacob was in so much pain, and doing so poorly before the procedure, it wasn't so much of a difference as it is now.  Next time we will know more what to expect and plan our return travel accordingly.

Speaking of next time, Jacob's doctor wants us back in 8 weeks for his next treatment.  With the large size of his lesion and the location of it, he wants to work to aggressively shrink it to a level that is safe for Jacob and that we can maintain with (hopefully) yearly treatments to keep it small. All this will depend on its growth, which is impossible to predict, but we are happy to have a plan in place, although he said it may take several treatments initially to achieve the desired result we can then maintain. So this means we will be back mid April, and then again likely this summer.  At this point, it is exhausting to think about coming back so soon, but at least the weather will be better. We have enjoyed the snow at times, but it does make getting out and about difficult when walking with 2 small children.

Overall, it has been a pretty relaxing weekend, as it goes.  The boys have enjoyed being here at the Inn, as we have been able to keep more to their schedule, and it is much more home like.  Here are some pictures of them here throughout the week. Before surgery...

After surgery...

It has been a great trip overall.  We are still coming to grips with the idea of Boston becoming our second home, but if you needed one, what a great city!  We really have fallen in love with Boston and its people.  For such a big city, everyone is so friendly.  I expected to annoy the locals a bit with our perpetual state of slow moving and being lost.  But everyone was so nice.  We would be standing on a street corner trying to decide which way to go, and more than once someone would stop and ask us what we were looking for and help us find it.  Everyone we asked for directions did not hesitate to help us.  On the subway, I always had at least 2 people offer me their seat when I stepped on with my baby strapped to me.  Bostonians take pride in their city and appear to want visitors to appreciate it as well.  And the hospital, I cannot say enough good things about Boston Children's Hospital. What an amazing place.  It is like being at the United Nations, as there are so many people from all over the world who have brought their children there to be helped by the best in the world.  For many, it is the last chance place.  Where you go when no where else can help your child.  The thing that struck David and I the most was that you would think it would be kind of depressing there with so many severely ill kids. But there is such an air of excitement at Boston Children's Hospital.  Everyone is so happy to be there.  The doctors and nurses are so excited about helping your child.  When we voiced our concerns about Jacob's future, all the doctors were like, "We expect no less."  Their goals weren't to just help him survive, but to live the life he wants. And they are actively looking for a cure.  Imagine, they have a registry of 60 patients in the world with this disease, and they are searching for answers. They are not content with current treatment options, but are continuing to pursue better.  It doesn't matter to them how few will benefit. My son alone is enough. Their motto is "Until Every Child Is Well."  And they mean it.  And all the parents we talked with, regardless of condition, what brought them to Boston Children's Hospital was the same thing.  A chance at a better, fuller life for their child.  Healing.  Answers.  And that's what brought us here. What we are bringing home from Boston was something I didn't expect...what I saw in the other parents here...

Hope

That's what I am bringing home with me.  Hope for a bright future for my Jake.  Thank you as always for supporting us on this journey, and keep praying for today's miracle.