Tuesday, July 3, 2012

There’s no sugar-coating it. Today was a rough day with the kids. My three year old is confused about who the adults are in our house and my teenagers would like to sleep the entire summer away without participating in anything family-oriented, not to name names or anything… Putting the petty things aside, I’m mentally preparing for our trip to NIH this Monday. I worry about Jacob daily, but the anxiety I feel before Jacob's tests, clinic appointments and results is hard to swallow. I started feeling it today, knowing that throughout the week it will only get worse. Packing on Sunday is always the hardest, then having to face my fear of flying, finally getting the big ol’ slap in the face dose while going through the big NIH gates. See? Already a mess…

I’m excited about running with Tammy M tomorrow morning and then meeting friends at the Museum of Florida History. I’m really looking forward to seeing one of my old girlfriends and her little girls (that aren’t so little anymore) for dinner tomorrow night. I can't wait for our Fourth of July activities either! A beach trip to St. George for the beachy, redneck SGI Fourth Parade, Tom Brown Park fireworks, and spending time with TD and Maks :). I have a movie date with my Beck on Thursday that will be a nice girls outing. Even with all these great activities, I know the NF2 reality will be here fast. Jacob and I will be traveling without Gavin this time. My awesome father-in-law will be up from St. Pete for the week to stay with Gavin and Brie while TD is at work. I am very thankful that Mr. Dana is retired from firefighting and is so kind to help us whenever we are in need. For those of you who offered to have a play date while we are away in DC, I'm cashing in!

Monday will be our travel day. Jacob's appointments start Tuesday morning with CT scans, both with and without contrast, of his chest and abdomen area to evaluate where the para-adrenal gland mass was removed. I guess they’re looking to make sure they got most of it, and that it has healed correctly and hasn't grown back. It was growing crazy fast for a schwannoma prior to removal, doubling its size to 12 cm over a five month period (which was odd). After Jacob's CT, we will go see Dr. Kebebew to get the CT results and hopefully he will tell us about the pathology of the mass they removed in January, confirming it was a schawanomma. Jacob will have his three hour (loooonnnng!) MRI of the brain and spine, with and without contrast, on Tuesday afternoon. I'm not sure why they aren't doing a delayed brain MRI like they usually do… Maybe it’s just once a year and they did it in January… I will have to ask that tomorrow. Wednesday, Jacob will have blood work and see Dr. Asthagiri in the afternoon. This is different because Dr. A always sees his patients on Thursday mornings, but the sooner I get the results of Jacob's MRIs, the better. I’m very worried, watching Jacob's balance get worse, that one of his VSs (bilateral vestibular schwanommas or hearing nerve brain tumors) have grown from the already-large 2 and 3 cm. I am sick over thinking about his C7 spinal tumor and, well, most of you know the rest. Dr. A will look at how Jacob's foot is healing from where the tumor was removed in January. We will also get the pathology report of that tumor. Jacob also wants to talk to him about having a few tumors removed from his right forearm.

Please pray for us! Pray for our safe travels! Pray for strength and patience for Jacob and me! Pray for good results and that the Afinitor is doing magic on Jacob's tumors - ALL of them. Pray we are beating NF2!!

I'm saying prayers for my daddy too, who I love more than any words can express. He hasn't been feeling well, not himself for a while now and we are worried about him. He will be having a lot of tests coming up to find out why his white blood count has been so high for so long.

I will keep you all updated about Jacob! Thank you, as always, for your continued care and support.

I hope you all have a wonderful holiday! Happy Fourth of July! God bless our beautiful country!


  1. My prayers are with you, Tam. xoxo

  2. Praying that you & Jacob get the results your hearts desire. ((hugs))