So much has happened since my last update, I'm sorry I didn't update more on his recovery and in the months that followed, but we have been so busy with life, it has slipped my mind...which is not necessarily a bad thing! Jacob recovered well after his procedure last March, and we enjoyed spring baseball, which we all enjoyed. He was more into it this year, and we all had so much fun watching him. David coached his team, which made it extra special. Our dear friends son who is Jacob's age, also played on his team which was awesome. They had a great season, and we all had fun watching him play.
The birthday season followed, first with Elena turning 10, followed by Asa turning 12. In the middle of that, Elena had her spring dance recital, a big event for her, and Asa graduated from elementary school. We are so proud of them both.
In July and within a week of each other, Luke turned 4 and Jacob turned 6. Jacob graduated from pre-K in May, which we were so proud of all he had learned.
In the middle of all that, we decided to put our house on the market. We have been looking for land for years, and finally decided to just pull the trigger and see what happened, even though we hadn't found what we were looking for yet. Our house sold in a week! Having still not found what we were looking for, we moved in a month later with my parents until we found something. The night we moved out, a property was listed. We looked at it the next morning, but were not the only ones. They showed it 21 times in the first 24 hours, and got 5 offers including ours. In an amazing turn of events and nothing less than a gift from God, we got the house. We moved in on August 1. Our family grew by quite a few feet and paws, as we inherited with the house, 4 hens and a rooster, and we adopted from the shelter a puppy and 2 kittens. Our house is on 12 acres, with a pond and a pool, and tons of space for us to play outside. It's everything we ever dreamed of having and then some. We are so thankful.
On to Jacob and our current status...we originally planned to go back up to Boston for follow up treatments in June, but when we got imaging here at home and sent it up, it looked like the lesion had too much scarring to handle another treatment at that point. They felt it best to hold for a bit and then reassess at the end of the summer. We had another x-ray and imaging studies of the lesion in July, and sent those up. The said they were not 100% sure if they would be able to treat, but wanted to try. They did not feel comfortable going longer than 6 months without seeing him, and if we were going to come up, they wanted to try another sclero treatment. They did say that if his lesion in his back and chest are truly too scarred to treat now, that we would need to discuss other options, specifically surgical resection. Friends, this is not an avenue they or we want to pursue. It is not recommended treatment for his condition, as the vascular nature of these lesions make bleeding a huge risk. And Jacob's is tangled throughout his chest, invading and wrapping around vital organs, entertwined with his ribs and spine. The messy and difficult procedure that would ensue poses tremendous risk. In addition, eventually his lesion will grow back, as is the nature of his rare condition. The only reason they fear it will become necessary to consider this option, is the proximity to his spinal cord, and how it is pushing and compromising the integrity of his spine. We will have to weigh the risk of leaving it be and allowing it to continue to grow and push on his spine, knowing the potential catastrophic damage that can occur from that, with the huge risks associated with such a drastic operation. Please pray that we will not have to discuss this option, or be faced with that choice. We are hoping and praying that the lesion will remain stable, and able to continue to be controlled with the less invasive sclerotherapy and embolization.
I haven't discussed much with anyone my feelings this go around, mostly because I have just refused to think about these possibilities. I have always faced this thing head on, but this time, I just needed to be in denial for a bit, as I'm not ready to deal with this. We have been in a bit of a blissful state, living up here on our land, just enjoying each other and life. I have not wanted to deal with all of this again. But it's here and there's no denying that now, so I am ready to suck it up and move forward finally.
I am thankful as ever for my dear friends, who know me well enough to let me talk or not talk about it, and are simply there. For every one who holds thought or prayer for Jacob, thank you, and we covet both of those this week. We fly out in the morning, and have appointments on Thursday, and his surgery is scheduled for Friday. I will update as I'm able. Much love to you all from the Casteel's, and of course from Jacob.
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