I'm sorry I've been bad about updating. I put FB updates out as Jacob recovered last April, but never got around to a blog update from our trip. It went very well, and we got a positive report from his procedure. The lesion growth was relatively stable between that one and the previous treatment for the first time ever. From all the research they have done on Jacob's condition, for many patients, their lesion growth plateaus in later childhood. The lesions grow in response to growth of the child, and to hormones, and children's growth typically level out from ages 5-10 or so. For Jacob, we had not seen any stabilization of his lesion growth yet, and as he is now 7, this is a concern. He still has had rapid growth and no signs of slowing down or respite...until this last one. With the last one showing more stability of the lesions, I am hopeful that perhaps we have hit the quiet phase of this condition. I am anxious to see how it looks this time, as they were still hesitant to get my hopes up that he is plateauing, having only seen 6 months of relatively little lesion growth. I am hoping that if we get a good report this time, that perhaps that is where we are, and maybe even they might feel comfortable going longer than 6 months between treatments. I will not push for this, as we have experienced going too long between and the impact that had on him, but if they are feeling more comfortable, I will not argue.
Here are some belated pictures of him on the last trip on procedure day...in preop, rolling into the OR suite, and leaving the hospital...he was so brave.
The summer brought baseball for the little boys, where they got to play on the same team for the first time which was really fun. We spent the rest of our summer swimming and playing outside. We vacationed in July with the family.
Speaking of new family members, after a tragic loss of her flock to a weasel in May, Elena committed to rebuilding and raised a new flock of baby chicks over the summer. To help her ensure their safety as well as accommodate the larger number of birds, we expanded her chicken run and built a brand new coop. David and his dad did it themselves, and did an amazing job!
She now has 1 rooster, 14 hens, and 3 guinea fowl. It has been a ton of work, but she has done a great job, and now is seeing the fruits of her labor as the hens have began laying.
Back to business, We left early early this morning, and are currently on a layover at LaGuardia, but should be in Boston a little past noon. We have appointments scheduled Tuesday and Thursday, and his procedure is Friday November 2. I am hoping we can find some fun activities for Halloween and packed costumes with us. I figure Boston is a good city to celebrate such a holiday, and am excited to see what we can find to do. David is not able to go with us this time, but my mom is going, and we decided to take Asa as well. So the 4 of us are on our way. So far I think I'm doing pretty well, compared to my usual. Honestly I haven't had the time to think about it, nor have I really allowed myself to do so. I am trying to view it in a routine sense, that we aren't expecting anything out of the ordinary, he is having routine (for him) treatment for his chronic (albeit rare) medical condition...only thing is we have to travel 1,000 miles to do so. But I am keeping my feelings in check, and taking things a day at a time. Another aspect that has become routine as well, is the lack of insurance approval for the procedure. They sent me a denial letter last Monday, and I spent another hour and 40 minutes on the phone with them Friday...so that battle ensues, as per our usual.
