We got our luggage and subway tickets for the week and made our way to the T (Boston's subway system). He ended up sleeping in the stroller the entire way on the T to our home for the week, the Yawkey Family Inn. The Yawkey is a renovated Victorian home built in 1889, that is part of the patient & family housing program for Boston Children's Hospital. It is about 6 blocks away, an easy walk to the hospital, and where we stayed 2 out of the 3 trips we took in 2014. It is a wonderful place that takes a great deal of stress off of us and many other families.
Jacob paid a visit to the frog statues, and we continued up the hill, where there is a Civil War monument. Jacob ran to it, excited, and wanted me to take his picture. He didn't know what it was but said it looked like history.
We kept walking, enjoying some of my favorite views of the city, and crossed over into the Public Garden. It looked different, with the pond drained (so really there was a big mud hole in the middle that normally is covered in snow and not such an eyesore). We still enjoyed it, Jacob especially, who counted the squirrels (47), and loved the duckling statues.
David & I sat on the bench on which Robin Williams and Matt Damon had their iconic conversation in Good Will Hunting.
Jacob got really excited about the statue of George Washington, and said, "I know about George Washington and read a book about him at school!" He wanted me to take a picture for his teacher. So here you go, Ms. Bobbie!
We crossed over the bridge and headed back to catch the T to our first appointment of the trip, at Boston Children's Hospital.
One of my other questions, which was also drug related, was that the initial trials of Sirolimus only recommended it for use for 2 years, and I have heard many reports of patients being on it much longer. He said that they are using it much longer now, and that it is proving safe to do so. That was also a relief, as if he ever needs it, Jacob could potentially stay on for as long as he needed it, and not have to come off and be right back at square 1.
He also told me about several very exciting developments with BRBNS. He said that they had a breakthrough that they published a year ago. When we came up in 2014, they told us that they had isolated the gene responsible for BRBNS. He said now they know what is actually faulty on that gene. They have sent samples (some of which could have been our son's) to geneticists in Brussells, Belgium, who discovered more. BRBNS is actually 2 genetic mutations occurring simultaneously that result in this condition. It is the only known syndrome resulting from 2 spontaneously occurring genetic mutations. The odds are even more astronomical than they originally thought. He said they also have tracked these mutations to see what exactly they affected, and found that they change the receptors which are responsible for blood vessel growth and production. They are currently researching how to switch these receptors off, or alter them to stop the abnormal growth altogether. I know you may have gone cross-eyed with all this medical jargon, so I'm gonna reiterate that last statement...STOP ABNORMAL GROWTH ALTOGETHER. That means cure this, people! I recognize that success in this area, even immediately, would take years until implementation, but it still gives me hope. My son is 5 years old, has a 1 in a million disease, and people right here in this city are working with people halfway around the world to find a cure, that if found, could come in his lifetime. This is hope, my friends. Not just hope for life, or hope for good quality of life, but hope for a cure. And before you tell me not to get swept away by that or get my hopes up, I'm gonna quote Andy Dufresne from the one of my favorite movies, The Shawshank Redemption..."Hope is a good thing, maybe the best of things." I believe that. I've seen what my days look like when I lose hope, and what they're like when I cling to it. So I'm going to cling to that hope.
We discussed much more at this appointment, but honestly my mind is such a muddle, I can't remember more. One thing I had forgotten about this hospital was how important your child is to them, and how important you are as their advocate. We talked to this physician and his team for over an hour and a half. He never once looked at his watch, clock, or phone, or indicated in any way that we took too much of his time. I felt kind of bad at the outset, as we did not need treatment currently, but I made this appointment strictly as an informative one. He told me in 2014 that if I ever had questions or wanted to discuss this, not to hesitate, and he meant it. I even apologized that we didn't need anything right now, and he said keeping us informed on the most current treatment options and confirming our plan of care is no less important than anything else. He asked questions of us, and thanked us about what they can learn from Jake as well. I was also struck, as I was also in 2014, at their ease and comfort with this condition. They know so much and are so comfortable with these insanely complicated treatments, that it puts me right at ease. I get to just be mom. So I cannot express how good this appointment was for my heart. I feel confident in the path we have chosen in treating Jacob's condition, and confident in the people in place to help us keep him healthy.
We stopped on the way out and let Jacob see his favorite thing in the hospital, just outside the outpatient elevators. Its a ball maze of sorts and he thinks its the greatest thing ever. He was so good in that (long) appointment, so we were happy to see him having fun watching it.
Those of you who know me well, know what a struggle this has been for me of late. I feel affirmed in the decisions we have made so far, whereas before we left, I felt like a failure. I will continue advocating for the best possible care for my son, and hope that we will continue to be equipped to care for his physical self, but for the person, the man he will become. A dear friend gave me this, which I wore on the plane ride here.