The Andrews - Life in Kanab: 2017

This month in a nutshell:

Daron was throwing up for 3 days not able to hold water. He had also had a headache for a week or two. I took him in on the 3rd day to get fluids and blood work done at our local clinic. The Dr. said if the blood work came back good then he would do a CAT scan. Daron never gets headaches and he rarely is sick to his stomach. In fact, he didn't feel sick he just kept throwing up. Ironically, a few weeks prior someone had cut him off on the highway which resulted in him pulling off the highway and clipping a tree to avoid T-boning the guy. So in my mind I thought he might have some swelling in his brain from the accident.

The blood work came back clean that week so they were checking with insurance to ok a CaT scan. The next week Daron had visual disturbances at work. Seeing spots mainly. Thursday he came home throwing up again so within 20 minutes I had him at the clinic for the Catscan.

Friday morning Daron and I were having coffee and Daron said well I guess its good news they didnt call us yet! It was about 7:45 a.m. At 7:55 a.m. the doctors nurse called and told us he had a large front left brain tumor and that the next step was an MRI, then a Neuro-Surgeon visit and then if needed an oncology visit. At this point I was numb and in shock and had to tell Daron about the phone call! We were in shock and hopped up on adrenaline so we kidded most of the day about having a good excuse not to do things because of the brain tumor. At 2 p.m. I called to see about the MRI and left a message. By 4 p.m. I called the front desk and explained the situation and how I was a little anxious about getting the MRI in a timely manner. The front desk checked and said the MRI was still pending! WHAT??? The awesome lady said to go to the ER to get it quicker. We are 1.5 hours from St. George Utah and a much bigger hospital. I knew if he had a headache, vision issues or started throwing up we would go immediately to St. George. So I went to the hospital to gather the medical files. That night Daron and I looked at the catscan and report. The report said they thought it was aGlioblastoma Multiform. I told Daron we could NOT google it. I googled it though. I would say it was a mistake but it made me realize that this was a fast growing aggressive tumor and we didn't have weeks to dink around with the insurance. Saturday we went to the ER and admitted, Sunday his parents flew in and Monday he was scheduled to have a biopsy. We got a kick ass neurosurgeon who studied at Emory Univeristy in Atlanta Georgia. Daron and I were both comfortable and impressed by him as was Darons mom and dad. The nurse from Kanab called on Monday while I was in the hospital with Daron and told us the MRI was pending but was going from physician to physican so we should hear by Wednesday. I told her he had the MRI, another catscan (which showed no tumors in his body) and he was having it removed on Wednesday. We knew we would hit our deductible x 10 so why not go to the ER and get things started???

We decided to forgo the biopsy on Monday and do a resection. That means take out the tumor. Wednesday they scheduled the 10 + hour surgery which was nice because we got to go home Monday night and Tuesday night and hang out with Addyson who was on edge from me picking her up so late from a friends on Sunday night and having David and Paula in tow.

Wednesday surgery - Daron came out of it wonderfully and he was joking with the nurses and saying please and thank you. The nurse said he looked good and he said "I'm sure you look good too if I had my eyes open." The Dr. confirmed with the family that it was a GBM. We were hoping it was a lymphoma in which they could use chemo to remove it. The surgeon kept saying that his tumor was in "prime realestate" and he didn't want to get too close and damage the brain. It is a tight rope that the surgeons walk. Daron said to be aggressive and try to get it all.

Thursday - Daron was feeling good but when he moved his forehead or eyebrows it would hurt. So we tried not to make him laugh or make any facial expressions! That was hard because we are a funny family! The nurses loved him and were so impressed with his progress. They do a catscan right after surgery to make sure there is no bleeding. They do an MRI the next day to see if there is any cancer left. There was a nugget that the surgeon could not get because in removing the tumor his navigation equipment wasn't working because the brain shifts when the tumor is removed. Both MD Anderson and St. George hospital are getting a machine in the spring that the surgeons can use during surgery to get an MRI during surgery.

Friday - 2nd surgery to remove the nugget. As much as Daron did not want to go in for a 2nd surgery he really wanted the tumor out. In talking with people who have had a loved one with GBM many times the tumor reaches out in so many directions that they cannot take it out surgically and must rely on chemo and radiation. After the 4 hour surgery on Thursday I walked into the ICU and the surgeon asked how Darons personality was. I told him it was perfect and I had forgotten how funny he was. It made me realize that he hadn't been himself the past few months and I thought it was stress/depression from work and now I realize it was the tumor growing. Amazingly he had no neurological deficiets and the surgeon said he got 99% out. He assisted a neuro surgeon earlier with a surgery so that neuro surgeon assisted him with Darons surgery. He asked that surgeon to take a look and he removed a little. Then our neuro surgeon went back (remembering that Daron told him to get it all) and got as much as he could.

He did great with recovery and they sent him to the neuro rehabitilation floor. He was not happy about this. He was walking, talking etc. but since he was lying down for about 7 days his legs were a little wobbly and they were worried he might fall. Daron was not happy that there was an alarm on his bed. This however allowed me to take a break and go to the Jublilee house (like the Ronald McDonald house) to get a good nights sleep. Well as good as it can get after the love of your life has two brain surgeries. Two days in the neuro unit he passed all the tests and they said go home we got nothing else for you here!

Update: Daron will be getting radiation therapy and chemo (via a pill) for 30 treatments (6 weeks M-F) in St George Utah. He will stay there some nights and drive back and forth on some days. This is standard practice for Glioblastoma Multiform. Once this treatment is over he will then qualify for immunotherapy clinical trials or other clinical trials. Duke, MD Anderson, University of California Irvine all have glioblastoma multiform clinical trials. Friends have shared stories of people who are 5, 8 and 17 years out from their GBM diagnosis and I am confident Daron will also follow this path! Thank you for the love, support, prayers and donations and cards.

At home post surgery watching cat videos with Addyson.