Brain surgery #1

January 2009, at the age of 24, Tony had a craniotomy to resect his brain tumor. We left very early in the morning to be at the University of Utah hospital in Salt Lake City where a 4-5 hour long surgery was to be performed. Brain surgery. This was a big deal to us. It's not every day that you sit in a hospital thinking about your husband's skull be drilled into and a piece of it removed in order to remove tissue cells among all that brain matter.

I remember as the anesthesiologist wheeled Tony back on his hospital bed as Tony's hand left mine. The look in his eyes was something I will never forget; there was a pleading to God to please allow this operation to be successful, but mostly I saw my husband's pure love for me. It's as if he wanted me to know in that moment that all would be okay and that no matter what, we would be together always.

And I know we will always be together.

Over the next few hours, I tried to keep myself busy and was glad for all the company to join me. Several family members waited at my side, nervously making light conversation. As soon as the surgery was completed and I was allowed to go visit him in the ICU, his surgeon came in to discuss the success of the operation. The resection was very clean and the MRI the following morning showed that all of the tumor was removed. Great news! But after the good news was relayed to us, his surgeon looked concerned. He explained that there was some weakness of Tony's left side of his body but expected Tony to make a full recovery as the swelling in his brain went away.

We were not expecting this at all. I walked in to see Tony and saw with my eyes that Tony couldn't move his left leg or arm at all. He didn't even have sensation on those limbs. As the next few days progressed, little change was seen Tony's paralysis. Doctors strongly recommended that he be moved into in-patient rehab in the same hospital. Once he was transferred a physical therapist met with him and estimated that Tony would need to remain in rehabilitation for a little under two weeks.
This meant driving 45 minutes every afternoon to be able to spend a couple of hours with him. This also meant that we would be apart quite a bit for a couple of weeks, something that we had not yet experienced in our brief year and a half of marriage. That night, after tearfully leaving Tony at the hospital alone (I had stayed with him overnight up until this point), I climbed into our bed. It was such an empty space next to me. It finally all seemed real. I pulled Landon into my bed with me and sobbed next to his sweet little face as he peacefully slept. I missed him so much.

The next couple weeks I drove up with my father-in-law and with Landon every day to visit. Tony sure would get excited to see us! When we would arrive, I would help Tony into the shower and bathe and dress him. It took a bit of practice to figure all that out-- dressing an adult is definitely different than dressing a baby! Each day Tony's progress improved, and he was able to walk out of the hospital with only the help of a cane.

At home, we made small adjustments to our life. I was happy to be able to help Tony with small tasks such as tying his shoes, clipping his fingernails, tying his necktie or bow (my new hidden talents!), and being his sous-chef/ his hands in the kitchen when we cooked together. Before long, Tony was strong and walking independently and was able to hold Landon in his left arm. His left hand lovingly became known as "the claw" as the only movement he had in his hand was opening and closing.

The results came back from the biopsy of the tumor. We were relieved to find that his tumor was a low-grade, or very slow growing tumor called a diffuse astrocytoma (also known as grade II). No further treatments were required and all the follow up we needed was for Tony to have MRI scans every 3-6 months for the next few years in order to make sure it wasn't growing back too quickly. What a miracle this was! We had prepared ourselves "for the worst" and felt blessed beyond measure. We could continue our life as before with these tender moments we experienced together. Being able to serve Tony with his minor physical limitations has allowed my heart to open up to him and love in a deeper way. It allowed both of us to humble ourselves in our marriage to help one another. We had been blessed in countless ways in learning certain lessons in life when we were young and understood the beauty and importance our marriage was for our growing family. All that mattered was that we continued to love each other, appreciate our children, and praise Heavenly Father for giving us the time we shared together.

Life continued on and we had the birth of our little Emma in August of 2009. She was so beautiful and perfect in every way, and Tony immediately made a special connection with her. Emma not only looks just like her daddy but shares many of his personality traits. As she grew older, we had her tested for LFS at the age of 6 months and the results were positive and she began yearly cancer screenings just like her big brother. Landon and Emma were sedated once a year to have a brain and full body MRI to check their bodies for any tumors or abnormalities and all was well for a couple of years.

During this process of dealing with Tony's brain tumor and finding that our two children both had LFS, we faced the decision of continuing to add to our family or deciding to be finished having children. Here is one of the most beautiful experiences Tony and I have encountered together. With the information we were given from our doctor, we understood that any further children we had naturally would have a 50% chance of having LFS.  Options such as IVF (in-vitro fertilization) or adoption were common choices parents with LFS have made and could ensure that a child would not have LFS. Together we prayed and pondered on what we should do for our family. From the time of our engagement, we had always wanted a large family. We didn't want our future health concerns to govern all our choices we made; life is worth living no matter how long or short we have. Tony and I strongly feel that God plays a larger role in our lives than we can imagine, and that trusting Him and being obedient to the revelations and impressions we receive will always bring peace and happiness. I can testify that this is true! We decided to continue to work toward bringing more children into our family through natural conception after feeling great peace about the decision. Few experiences in my life can compare to the joy we have in our life presently because we trusted our Heavenly Father and allowed Him to bear our worries for us. I understand the health challenges that our family can possibly face but find great strength and peace in the Gospel of Jesus Christ. Through Him, life will not just be okay, it will be joyful and full of light and happiness!