Jun 21, 2018 Latest post:
Mar 22, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. On March 8th, I received a heart breaking phone call about the results of an MRI that showed Santanna had a large mass tumor in her brain. On March 9th, she was referred to the University of Minnesota for further testing to find out what this mass was specifically. Over the past 3 months we have heard many possibilities and changing opinions. It has been an emotional roller coaster.
The first bit of good news was that it wasn’t actually inside of the brain (win #1), but rather pushing down on it. She has about a quarter of her brain pushed down by the tumor on her left temporal region. After several CT’s, CTA’s, MRI’s and an angiogram they were able to give us a best guess. They discovered the large mass had deteriorated a large section of her left temporal bone, a majority of the bones around her left ear, half of her occipital bone; behind her left eye and an important part of her jaw. They know this originated as a skull based tumor; Aneurysmal Bone Spur or an ABC tumor. There are several benign and cancerous types, but they do not feel this is cancerous (praying).
We will not know the final outcome of pathology until 3-7 days after her pending surgery for resection and reconstruction; on June 25th. They were unable to safely biopsy the tumor because of its location and the high risk of her bleeding out. After her last angiogram they found an additional mass of vascular nature. This is a tumor of tangled vessels that must be removed very careful so as to not restrict or cut off any major arteries and or nerves. Oddly enough, our youngest, Kelsey, had a cavernous hemangioma removed in her neck region when she was in 2nd grade; this was a vascular tumor and benign thankfully.
These incredibly skilled surgeons have mapped out a 3-D pathway to remove both tumors to avoid any major issues. The reconstructive surgeon has made a 3-d printed piece of PEEK, which is a nontoxic polymer to replace her missing jaw bone; so that she can regain normal jaw opening and closing function. They will not be able to restore her left ear function. They will rebuild the surrounding structure, but have to close off her opening with a flap of skin. The reconstructive surgeon will use body fat from another location to recreate a symmetrical appearance when looking at her from right to left. They will use metal plates and mesh to reconstruct the compromised bone. I kindly offered to sacrifice my body fat because Santanna has none to speak of. They declined my offer, sadly. We are impressed with their thoughtful plans that include plan B & C; If needed. Her surgery will begin at 7:30 am and conclude after a projected 12 plus hours.
We had our final meeting with the amazingly gifted surgeons involved in her surgery, yesterday. We were very happy to find out that she will likely not need to have her enlarged lymph node, in her neck, removed, as we were told previously. They said they would check its status on her post op visit. In addition, that most of her hair will not to be shaved. They will do a large C shaped craniotomy from the bottom of her left ear up to her left temple and spare her hair as much as possible, and she will not have to go to a rehabilitation facility after the hospital stay. At one point we were told a few weeks to a couple of months stay was likely. We consider all of this a WIN!
Santanna has been an absolute champ considering the reality she has been facing. She has had to move herself and our 5 year old granddaughter, Scarlett, back home with us (blessing to us). This is something an almost 27 year old would consider not desirable, but we will give her the best love and care possible, that is guaranteed! She is on a leave of absence from her work, at the MN Autism center, for 6months during her recovery. They have been remarkably understanding, flexible and supportive with all of Santanna’s last minute doctor visits!
We want to thank everyone for their thoughtful words of care and inspiration, support and prayers up to this point! Please think of her on Monday and keep those prayers coming. I will be staying in the cities with her until she can return home. I will keep updating her daily wins!