Dear Friends and Family,
Let me start by thanking each of you for all your fasting and prayers on Evan's behalf over the last few weeks. I can tell you that your prayers are being answered because we have felt blessed and strengthened in so many different ways this week.
Since I don’t know how much or how little information each of you has received through the “grapevine” this week, I thought I would start from the beginning and catch you all up to the same place. After this, I'll try to send out updates as often as I can as things develop and we learn more.
As some of you may already know, over the last several months Evan has become increasingly tired and sleepy. The doctors we went to see tested him for thyroid problems, anemia, mononucleosis, etc., and they tried various medications, but they couldn't find anything wrong and none of the treatments helped. Evan also had another sleep study done to see if this was somehow related to the sleep apnea he was diagnosed with two years ago. There were only slight changes and nothing that would explain the severe symptoms he has been experiencing.
Then, about 4 weeks ago, Evan woke up from a Sunday nap and his left eye seemed to be drooping. The next day we went to see Evan's primary care physician about it, but he didn’t seem too concerned and referred him to an Ophthalmologist to have his eyes checked. The eye doctor didn’t find anything of concern either, and Evan’s eye returned to normal within a week or two.
Then, about 2 weeks ago, I noticed that Evan's speech seemed to be slower and his short term memory seemed a little off – he would ask me the same question several times a day, or forget things we had just talked about. So last Wednesday (Aug. 1st) we got in to see a new doctor who immediately ordered more blood tests and an MRI. The MRI was done on Friday (Aug. 3rd) and on Tuesday (Aug. 7th) of this week we received the results from that MRI. It showed a large tumor (about the size of a walnut) in the center of Evan’s brain.
It just so happened that we already had an appointment scheduled that very day (Aug. 7th) with Evan’s Neurologist. We had made the appointment a week or two before as a follow-up to Evan’s most recent sleep study. That turned out to be a huge blessing because we didn’t have to wait for days and days to get a more educated analysis of the MRI. That would have been absolute torture.
The Neurologist confirmed the tumor and informed us that there were characteristics about the image that suggested the tumor was most likely malignant. He immediately got us an appointment for Thursday (Aug. 9th) with a highly reputable neurosurgeon in Provo, to find out if the tumor could be removed surgically. That appointment probably would have taken us at least a week to get on our own, so we were very grateful for his help.
On Thursday (yesterday, Aug. 9th) we met with that Neurosurgeon, Dr. Gardner. He did not deliver the news we were hoping for. The location of the tumor is such that removing it surgically would be too dangerous. The tumor is located deep in the brain, literally halfway between the front and the back, and halfway between the top and the bottom. It sits just below the ventricles where the two hemispheres of the brain come together. Luckily it is just above the pituitary gland and is not affecting the spinal cord or the flow of spinal cord fluid. So that was good news!
The problem is that the tumor is attached to the two centers of the brain that control breathing and wakefulness. This means that if they tried to remove the tumor surgically, they would run a high risk of damaging one or both of those brain functions which could leave Evan in a vegetative state or unable to breath on his own. Obviously, the risk of that is not an option.
Basically, the only treatment options left are radiation, chemotherapy, or a combination of the two. In order to determine which treatment to use they have to determine what type of cancer it is, which means they need to do a biopsy. We really liked the surgeon we met with yesterday, but we’re going to meet with at least two more surgeons before we decide who we want to perform the procedure. We have taken Evan’s MRI films to Neurosurgeons at LDS Hospital and the University of Utah. The surgeon at LDS Hospital was recommended to us by Evan’s Uncle who is a doctor in Salt Lake, and the surgeon at the U of U was recommended to us by our friend and neighbor whose son had a very complicated brain surgery there last summer. We’re hoping to talk to each of these surgeons sometime in the next week.
In our search for a great oncologist we’ve also been blessed with great help. My close friend Jenny, who has been battling various forms of cancer for several years and knows all the best Oncologists in the area, has been extremely helpful. As a result, we were put in touch with someone at the Huntsman Cancer Institute in Salt Lake City. They referred us to the one and only Neuro-Oncologist in the state of Utah. He specializes in brain cancer. We have to wait until Monday to see if we can get an appointment with him, but at least it gives us something to hope for.
Basically we’ll be in a holding pattern for the weekend – waiting and hoping to get appointments with two more Neuro-Surgeons and the Neuro-Oncologist for next week. We anticipate the biopsy will take place within a fairly short period of time after we have those appointments and decide which surgeon we want to perform the procedure.
I’m sorry this message was so long – but now that you’re all caught up to speed, they should be shorter from here on out. I just didn’t want anybody to be confused if they were missing part of the story.
Since I don’t have everyone’s e-mail addresses, please feel free to forward this message on to anyone else you think would like to receive it. If I don’t have your e-mail address, please send it to me and I’ll be happy to add you to our list so that you can receive these updates directly.
We love you all, and are so grateful for your love and support. We’re all hanging in there – Evan and I are getting lots of love and support from our ward and our families, Ryan has been a trooper, and since Lindsay isn’t old enough to really understand what’s going on she has been our source of comic relief.
Thanks again for all your thoughts and prayers. I’ll keep you posted as best I can over the next few weeks and months.
With Love, Margot
