I feel very fortunate to have survived last week. We had a blow-out coming over the intercoastal shipping channel in Inglis (halfway home from St. Pete) with no tire shop open for 50 miles on Sunday. Jacob's Shands schedule was changed and his appointment with the pediatric surgeon was canceled on Monday. On Tuesday, Jacob had an audiogram and ABR testing (more exciting appointments, though these were here in Tallahassee) and my 20 year old cat, Booger, was found dead. We laid him to rest on Wednesday next to Gage (my Rottweiler who died 10 years ago) at Jacob and Brie's grandparents home in the country, lightening storm and all. Thursday, we made another trip to Shands for Jacob's infusion and TD had an important interview, all of this while juggling Brie and Gavin and… regular life (if you can call it that at this point!).
Last week’s upside was that we had our beautiful fifteen year old cousin, Darbi, visiting from St. Pete. I loved having her here to hang out with and to listen to her and the kids laugh and cut up. I've never seen two girls paint their toes 100 times, change clothes 200 times and, in between, beat Jacob at Call of Duty on the Xbox! We had fun downtown, taking a tour of the Capitol via the sky walk and having lunch at a little deli, we made a swimming trip every day, the kiddos went to the movies and we had a nice picnic at Maclay Gardens.
Jacob started Lighthouse summer camp, so he had his own adventurous week, the highlights (according to Jacob’s excitement level when telling the stories) being starting tae kwon do classes and going to a SWAT demonstration, which included flash bangs, repelling and a helicopter landing! TD's grandparents visited from St. Pete and we had a very nice dinner Thursday night, accompanied by some swimming, a mudslide and some very needed adult conversation! On Friday, the big kids had dentist appointments (which is becoming a stressful event to schedule as well). Gavin started swimming lessons, Brie started Junior Life Guard training and finally got her braces on and Jacob was tapped into the Order of the Arrow at Boy scouts Friday night out at Wallwood (in the pouring rain!). One of Gavin's favorite friends, Shep, turned two and we attended his AWESOME pool party on Saturday. Add in Jacob's occupational therapy and CST therapy and his weekly Boy Scout meeting on Monday night and it was a crazy week!
I’m very happy to report that Jacob did not get sick from his Avastin infusion last Thursday. He hasn’t felt sick once and hasn't even had a headache, which is an answered prayer for me! It was a long morning at Shands, though, taking almost five hours instead of the normal four. Despite the wait, we had a nice visit with Dr. Smith and went over a lot of things regarding their move, future radio surgery for Jacob's vestibular schwannomas, adrenal tumor surgery and his Avastin treatments. TD took the day off to spend with Gavin and the girls, so it was just Jacob and me. I was informed that the tumor board does feel like it is best for Jacob to have the adrenal gland tumor resected. Jacob's blood results returned mostly normal so his doctors agreed that it is safe to wait until the end of summer for the surgery. Jacob will continue with the Avastin treatments through July and take a break in August. It is recommended to be off of Avastin for four weeks before and four weeks after surgery. We wanted to wait until August if it didn't put Jacob in any danger because abdominal surgery would ruin Jacob's summer. We have an appointment to meet the surgeon, Dr. Saleem Islam, this Thursday. Just another trip to Gainesville… I will know more then. I also sent Jacob's scans and lab results to NIH (Dr. Asthagiri). He called me last week and said they would like to review the scans as well and weigh in with an opinion.
This week started off nicely, spending a sweet Father's Day with the two most important men in my life. I am so thankful to have an awesome husband and dad to my children. I'm really lucky to have such a great daddy too, who has been so good to me all of my life. I love them both so much. I am very fortunate to have a really cool father in law as well, who we missed very much yesterday. I wish we could’ve all been together, especially since it was also Gramma Gina’s birthday. I could never express in words how much they all mean to me....and my mama too!
As for this week, Jacob is back to Lighthouse camp, Brie is taking a half-day sculpting camp at Brush and Palette Studio (Thank you Grandma Gina!!), Gavin is still in swimming lessons, and Brie will be finishing up her Junior Lifeguard training. Jacob has a physical with Dr. Kelch this week and he will be leaving for whitewater rafting and Camp Daniel Boone on Saturday. Next week will be a little more calm, or so we think at this point!
I hope to fill everyone in on Friday about Jacob's appointment Thursday.