My Hero...My Husband

Some of you may be wondering what is exactly wrong with my husband and since the story is actually getting blurry for me, I wanted to get it down in writing and also share his story with others. I have been working on this for quite some time and although it may be long, its our story!  Its been almost 6 years to the date of when our lives would be forever changed...

My husband, Bryan, was diagnosed with a brain tumor in 2006.  The exact dates of things elude me but I know the general time line.

 Bryan decided late in 2005 that he wanted to join the United States Marine Corps as his grandpa and father had also been Marines. Bryan left for Marine Corps Recruit Depot (MCRD) on January 11, 2006.  It was a very difficult day for me saying good bye to him knowing that I would not see him for at least 12 weeks.  So I left his house and headed to my morning college class, but the weather was very snowy, icy that morning and I was running late, so the weather mixed with my probably not so good driving, landed me in the ditch.  This was my first encounter putting my car in the ditch and I was so emotional.  I ended up calling Bryan and his dad and they came and pulled me out.  They still joke to this day that I did it on purpose so that I could see Bryan for just a couple more minutes :)  But then began my journey of missing Bryan day after day!

At this point, I had been staying at Bryan's parent’s house and was living in Bryan's room and did find comfort in being by his family.  The last week in January, I happened to be at his house between school and work one day when the phone rang and it was Bryan.  This was very unusual because when you are in basic training you are only allowed to write letters until so far into training and then you are allowed phone calls. So Bryan's mom and I both picked up a phone and we listened as Bryan sobbed and eventually let out that he had been diagnosed with a brain tumor.  He explained that he had been getting yelled at by his drill instructors because they thought that he was not paying attention to what he was supposed to be doing, but what had actually happened is that Bryan could not see them because he had no peripheral vision in his right eye. So after being sent to Balboa Naval Medical Center to perform tests, this is what they had confirmed.  The rest of the conversation is a blur to me. Questions ran through my mind like, "Is he going to die?", "What will happen next?"  "He's so far away, how am I going to comfort him?" It was a very scary time.  In a matter of hours, Bryan's parents, uncle, and I had our plane tickets booked for the next week to fly out to San Diego to see what to do next.

In the weeks that followed, Bryan's parents remained in California while I had to return home because I had school/work that I had to tend to.  They had diagnosed Bryan with a rare brain tumor (I can't remember the name) that was growing into the major nerves/parts of his brain.  The plan was for Bryan to have surgery to remove what they could of his tumor and after they biopsied it, they would determine the next step.  They wanted Bryan to have the surgery right away but because he had a Sinus infection at the time, he had to wait until that was cleared up so the surgery was scheduled for mid March 2006.  There was a lot of worry and unanswered questions as we all prepared for the surgery outcome.  I flew back to California a week before the surgery was scheduled and while Bryan was still considered "property of the military," they allowed him off base to spend time with us.  We went to the beach, San Diego Zoo, and different parks in the area, not knowing if these would be the last fun times we would spend with Bryan.  We also became very close to Bryan's Gunnery Sergeant and his family and they became our second family in California.  Frank and Jody Ginn, along with their grandfather Dave, were our angels through this journey.  They took us into their home, provided us with home cooked meals, provided us with transportation to and from places, and most of all, helped our faith become strong in our time of worry! We are truly blessed that God send us these angels in our time of need!

Frank and Jody Ginn

Bryan's Dad and Grandpa Dave

"Pancho" the Parrot---Bryan's buddy...Jody and Frank's Parrot

The day of the surgery came and we prayed for the best outcome as we watched them wheel Bryan off to surgery.  All we could think about were the possible outcomes of the surgery: Bryan becoming paralyzed, his personality changing, dying...the possibilities were endless! We waited hour after hour and received updates on the surgery every couple of hours until after about 8 hours of surgery, one of the doctors came out to the waiting room and took us back to a room to explain what they had found.  The type of brain tumor that they had found was not what they had expected.  The brain tumor was actually growing out of his optic nerve and crossing into his other optic nerve.  Since they could not determine optic nerve from tumor, the only option would be to take out his optic nerves.  But this would require Bryan making the ultimate decision so they would take a small part of the tumor for biopsy that day and then finish up the surgery.The doctors had informed us that Bryan would need to start learning braille since the next surgery would leave him blind. 

Bryan's 1st Surgery

Dr. Wayne Gluf, being one of the best neurosurgeons in the country, thankfully did some research on the tumor before completing Bryan's next scheduled surgery and had great news for us.  His new diagnosis of Optic Nerve Glioma was actually a tumor primarily found in children under 10 years old and that it has been shown to be positively treated by radiation.  Since Bryan is 1 in a handful of individuals that has not been diagnosed with this tumor until he was an adult, they were not sure if radiation would work but they were going to give it a shot.  It was a very exciting, yet nerve wracking time filled with unknowns.  Luckily, this was during my spring break at school so I was able to spend almost 3 weeks in California helping Bryan through his recovery.

Dr. Gluf

Once Bryan was transferred out of ICU, he went to the Neurosurgery floor where he started speech, physical and occupational therapy.  He was very lethargic and kept telling everyone he was in pain.  The doctors and nurses felt that this was unusual for a patient who was about a week out from brain surgery and kept telling Bryan that he was not going to heal if he didn't get out of bed and participate in therapies.  They eventually discharged him back to his Medical Hold Platoon which was housed on the hospital grounds but a few buildings from the actual hospital.  He had been discharged only 1 day when we received a call at 5:00 AM that Bryan had had a seizure in the bathroom and was now in the ER and had to be intubated.  This was very scary as he had just had brain surgery and now he was having a seizure.  Luckily we were staying at the Fisher House (a Ronald McDonald house for military families) so we were able to get to the hospital in minutes to be by Bryan. Bryan was transferred right back to ICU while they completed many tests to find out what was going on.  After many tests and several days later, the diagnosis came back.  Bryan had bacterial meningitis.  The doctors could not even understand how he had gotten this.  It had to have been from surgery but it was very rare for him to get bacterial because viral is the one that is contagious and he did not have this kind. Bryan was very sick for some time.  It was all too scary knowing that he had made it out of brain surgery okay and now he had this life threatening illness.  It was decided by a team of doctors that Bryan would have to undergo, yet again, another brain surgery.  Within a day, he was back in surgery as the doctors described it, "disinfecting all of Bryan's brain and bones where they had completed the first surgery."  He came out of surgery and it was confirmed that the meningitis had not infected his brain and this was also very mysterious because if it was not in the incision site where they had completed the surgery, then how did he get this?  To this day, they still do not know how he could have gotten the bacterial meningitis.  After surgery, he was started on very strong antibiotics which he needed to be on for 8 weeks to kill the infection.  This required him to be pumped with antibiotics 3x/day.

Prior to knowing that Bryan had Menigintis

Passing the time at the Fisher House

During this time, he met with many doctors including Radiology, Endocrinology, Ophthalmology, and Neuropsychology.  His radiation treatments could not be started until after his antibiotic was completed so it was a matter of a waiting game in the meantime.  During his endocrinology appointments, he was told that he would most likely need to be on many synthetic hormones for the rest of his life because of where the tumor was located and where the radiation was going to be given.  The radiation would be near his pituitary gland which could affect all his hormones.  We were also very worried about being able to have children.  The doctors  told us that it was a very real possibility that we would not be able to conceive due to his already low testosterone levels and now having to undergo radiation.  We were told that while he waited to have his radiation Bryan needed to go to a sperm bank to store his sperm for in the future when we would want children.  Luckily, the Marine Corps helped us with this cost as it is very costly to store sperm.

Fisher House

He finally started his radiation treatments which lasted for 6 weeks, 5 days per week.  He was very tired during this process and he lost his hair on his head where the radiation treatments were given.  He had red, round spots for many months after the treatments were finished.  And to this day, his hair does not grow in as thick in those spots.  The goal of the radiation treatment was to hopefully shrink the tumor, but in the least, stop it from growing for awhile.  The only medical research that they have for his tumor in adults is that the radiation stopped it from growing for 10 years.  They basically stated that in 10 years they hoped to have better medical technology for when the tumor starts growing again. 

Bryan's Radiation Nurses

Where Bryan would have his radiation treatments

At the end of May, I was finished with classed for the semester and I was able to go to visit Bryan again.  He was almost finished with radiation and we were planning for the day that he could finally come back to Wisconsin.  Although it was a scary thought because we had so many unknown questions and we would be leaving the safety of the Balboa Naval Medical Center which employed many 1st class doctors.  Through Bryan's whole ordeal, he still had it in him to plan me a very special engagement.  On May 22, 2006, we were outside talking at the Fisher House when Bryan asked me to go change into something nice because we were going to be going to dinner.  When I came back up from our room, a white limousine was waiting to take us to dinner. I was so surprised and didn't know what to think. So we hopped in the limo and off we went.  We started by driving around downtown San Diego and stopping at several places to sight see, including overlooking the ocean at Soledad Cross.  We then ate at the most amazing Italian Restaurant in old town San Diego.  I was jittery the entire time, thinking to myself that something was up and that he wouldn't rent a limo to just take me to dinner.  After dinner, we went over to an Coronado Beach, where we walked along the beach at sunset.  It was truly beautiful and I kept waiting for Bryan to propose to me.  It was probably about 9 pm and we got back in the limo and headed back to the Hospital grounds.  I was so amazed that he had planned this but secretly I was upset because I really had thought that he was going to propose to me and he hadn't yet.  When we got back to the Fischer House, he asked if I wanted to go take a walk through the healing garden which was on the hospital grounds.  It was a beautiful night so I agreed.  We walked through the garden and stopped at the waterfall and it was so beautiful.  I thought it looked different from any other night and then I realized there were floating tea light candles throughout the whole waterfall.  I started crying because I knew then what was going on.  Bryan got down on 1 knee and asked me if I would marry him.  I of course said "yes" and then his mom and his brother, Joe, came and celebrated with us.  They had helped Bryan plan the proposal and were hiding in the distance to see our reactions. It was the most romantic, thoughtful proposal and I couldn’t have asked for a better person to share my life with. 

Mount Soledad Cross---How symbolic of our journey.

Sunset on Coronado Beach

The proposal with tea light candles in the waterfall

On June 14, 2006, Bryan was finally able to return home to Wisconsin. The anticipation of having him finally be home was overwhelming and we were all so excited for him to be here! The excitement was short lived though because then began the long process of figuring out what to do next.  He had many appointments at the Madison and Tomah VA Medical Centers to get him on the path to medical stabilization.  It was very scary for him, because since he had not even graduated boot camp and his medical condition had been pre-existing, the military would not give Bryan any benefits so our last hope was for the Veterans Administration to provide assistance to him.  Bryan had an amazing Veterans Service Officer, Rock Larsen, who helped him apply for benefits and helped him through the scary process. After many months, Bryan finally received word that the VA would consider him Temporarily Disabled for 2 years and would then at that time re-evaluate him to determine if he qualified for benefits.  So we did struggle for 2 years with the possibility that Bryan may not have health insurance in the future especially because no insurance company would sign him on for this preexisting condition.   

On October 31, 2006, Bryan pulled the most horrible Halloween prank that I could ever imagine!  Bryan was at his parents’ house handing out candy and was wearing a Scream mask, when his mom said that he started convulsing.  His mom thought that he was trying to scare the kids so she told him, "stop it."  But when he didn't stop, she took off his mask and noticed that he was foaming at the mouth and his eyes were rolled back.  After calling 911, his mom called me at work and I rushed home.  It turns out that Bryan had a seizure.  We always joke with him that this was not a funny Halloween Joke.  Then again in Mid May 2007, I received a call from Bryan at work and he was talking nonsense.  I was very scared when he hung up on me and I attempted to call him back.  His boss answered the phone and informed me that Bryan was having a seizure at work and that the ambulance was on its way.  It was another very scary day; we didn't understand why Bryan kept having seizures at random times.  During these times, he was always taken to our local hospital who did not know Bryan's medical background so they did not investigate into his health concerns and would just release him saying it was not big deal because they would just readjust his medication.  It was never a good enough answer for us and at one time, they did a CT scan and informed us that his brain tumor was gone and that that the radiation must have completely shrunk it.  Which upon further examination at the VA, devastatingly this had not happened. 

We are thankful for the life that we have been given!

After Bryan’s seizure at work, Bryan ultimately was pulled into the office a week later and informed that they could no longer have him working at the company because he was a safety risk (he worked with sheet metal and heavy machinery).  They informed Bryan that he could collect unemployment.  We were only 20 years old at the time and had thought that his boss obviously knew what he is talking about so we didn't argue.  After talking with many people about this, we found out that this was probably illegal because they should have found him light work to do but didn't even make the effort.  It was a very good job also.  Since then, Bryan works sporadically when he can find it. It has been hard because of his many doctor appointments and also that he has to travel 2 hours 1 direction to get to his doctor appointments.  This caused Bryan to sink into a severe depression and turn to abusing alcohol and prescription medication.  Ultimately, Bryan did go to treatment and over the course of many years, is finally on the right path to recovery.

We are very blessed in other ways though.  We were happily married on March 17, 2007. Shortly after, on July 9, 2007, we welcomed our son, Christian.  And again on December 7, 2009, we welcomed our beautiful daughter, Bryleigh!  The Lord did indeed bless us with 2 beautiful children that the doctors told us we would most likely never be able to conceive without help.  And also in 2008, Bryan was found to be permanently 100% disabled through the VA.  This allows us the comfort of knowing that Bryan will always have medical care through the VA.  Also, I and our children receive great benefits that we cannot be more thankful for!

We have met so many great doctors, nurses, and friends along this journey!  We still keep in touch with Frank and Jody and were even able to visit them in Jacksonville, North Carolina in February 2009.  We hope to see them again soon since they have helped our family so much!  But until then, we keep in touch through facebook and email!  Unfortunately, we have lost touch with Grandpa Dave but I continually pray that one day we may see him again!

The journey has been long and hard for our family but especially for Bryan!  We know that there are going to be many more bumps and turns in the road but Bryan has come so far from where the doctors thought he would be 6 years ago.  We are thankful for each and every day that we have on this earth! I find courage and strength in the multitude of obstacles that Bryan has overcome and I can't wait to share the rest of my life with Bryan!  Praise the lord for every day!

"My precious, precious child. I love you, and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, It was then that I carried you."