Thursday, March 31, 2016

The beginning is a very good place to start

Tony Means is my husband. He is strong, loud, friendly, wise, opinionated, obedient, and a lover of people. If he was writing this, he would also add in "incredibly good-looking." I'll let you be the judge of that :)

We met in October of 2006 and were married in June of 2007. Yes, we did marry quickly, and we were young! But we each knew with our whole being that together is where we were meant to be in life. There was no denying the strong answers we individually received through prayer to our Father in Heaven. It was the initial question to marry that prompted all our decisions afterward. Soon after being married, I began dropping subtle hints to Tony that I wanted to have a baby. Since I was young, all I wanted in my adult life was to be a mother. I admired and understood the blessings of my parents sacrificing for my mother to stay in the home and I wanted the same for my children. Plus, I am selfish and don't want to miss my babies!

Bringing children into the world was something we didn't take lightly. I believe God entrusts us with these sweet little souls and that is a GREAT responsibility. After careful prayer and consideration, we were overwhelmed with love and the answer to have a child. That brings us to April of 2008, when our beautiful Landon was born. *A miracle and a moment that shaped our lives. What an absolutely perfect baby he was to us! When Landon entered our lives, I remember getting a glimpse of how God sees each of us. We are each so beautiful and pure and bring much joy to Him. I finally really understood how God sees me. I finally understood that I am not a list of my accomplishments or the potential to be great in this world, but that I am truly His daughter. He loves me for me. Simply put, there is nothing I need to do to make Him love me or make His love increase for me. Heavenly Father always has and always will love me; I saw that in Landon the moment he was born and I was blessed to experience that with each child we have been given.

With our new-found happiness as parents we also had great responsibilities added to our lives. When you hold an infant in your arms, you want to protect that child from any ailments or harm that this life can bring. But such is not the case. As Landon grew into an older baby, he was plagued with frequent ear infections. Poor baby! He was in pain and many times as first-time parents, we were concerned there was an underlying problem. Was it JUST ear infections? Or what if he was having headaches? What if he has some terrible disease? Or what if it was cancer?! I didn't want to face the "C" word. Cancer.

Tony's family knew it too well. His mom died of breast cancer at the age of 29; Tony was only nine years old. His grandfather, uncle, and three cousins died of cancers at ages 42, 49, 21, 9 years, and 18 months. An aunt had adrenal cancer as an infant and an uncle had sarcoma cancer as a teen. On top of that, one uncle painfully fought leukemia until he passed away at the age of 38. "Now what has been going on in this family?!" is probably what you are thinking, and "Did you KNOW about all this before you married Tony?!" is another relevant question. The answer to the later is yes. Tony told me his family had some sort of cancer genetics running in his family. In fact all this cancer was the cause from a missing copy of the p53 gene. Most of us all have 2 working copies of p53, a chromosome that suppresses cancer growth. Those members of Tony's family who had had cancer were missing one copy of the p53 gene. This syndrome is called Li-Fraumeni Syndrome, or LFS for short. Those who have LFS have a 90% risk of getting cancer in their lifetime, with a high risk that cancer will develop before the age of 30. At the time of meeting me, Tony did not know if he had Li-Fraumeni Syndrome; his mother died before she was ever tested. Based off her early bought with cancer at the age of 26, it was assumed that she had LFS which meant that Tony and his siblings could have this genetic syndrome as well. I was not too concerned about the possibility that Tony could be positive for LFS; I rationalized that maybe he might not have it after all since neither Tony nor his two siblings had battled cancer yet. But doing what any worried parent would do, we did worry about the worst for our little Landon. We wanted to know if he was at a higher risk of cancer so we could be better informed parents. And with a serious discussion with each other and then with his dad, sister, and brother, they decided to be tested for the genetic mutation.

After meeting with a genetic counselor and a doctor who specializes in LFS research at the Huntsman Cancer Institue in Salt Lake City, Tony was tested and his result was positive for Li-Fraumeni Syndrome. With Tony's results back, his doctor recommended he start a cancer screening protocol right away. Landon also was tested in the mean time. We awaited the results for Landon and began screening protocol.

The first screening completed was a brain MRI. I remember the day well. It was a Saturday morning in December when Tony, Landon, me, and the rest of his family went up to Huntsman as the three siblings each had a MRI scan of their brains. Landon was seven months old and quite a handful. He was such a sweet boy with boundless energy. I nervously bounced him around the room in my arms as I let the reality of what was going on reach me. We hadn't heard the results of Landon's test yet, and I was nervous about the pricing of the MRI for Tony. We both were full-time college students at BYU, but only Tony was working to support our little family. It was a bit of a fight to get the insurance to cover this brain scan out of network, especially since we were dealing with a student health plan and there were no real symptoms. The worry of insurance and costs definitely took a back seat to the anticipation of awaiting the results of Landon's test and of Tony's brain scan. A few days later, we received a phone call from our doctor. He had two pieces of news but he sounded really concerned. First we were told that Landon's test came back positive, he had LFS just like Tony. My heart felt a sense of peace as he related the information to us over the phone. I felt I had been prepared for the news, not because of my own preparation, but because of our loving Father in Heaven knew I needed a chance to prepare myself. Tony and I had been studying holy scriptures together as well as praying often. While doing so I again felt an impression that I did not believe was possible, let alone logical! A strong prompting came to me and to Tony that we needed to have another child. But that seemed crazy! Landon was still a baby, we were juggling Tony's work schedule with our school schedules, and above all, were in the process of getting tested for LFS. If there is one important lesson that I have learned in my short years on Earth, it is to ALWAYS listen to those promptings and answers we receive from God. What may seem impossible or hard always turns into showers of blessings.

So we listened and decided to try for another baby. It was a few days prior to our medical news that I had learned I was expecting our second baby. And with hindsight, I now see that God blessed us with the gift of peace in preparation for the news about Landon. We gained a greater perspective of eternity in that moment as we trusted Heavenly Father to lead our family and bless us with the gifts He knew we needed. The second piece of news was about Tony's brain MRI. The results were showing something unclear that seemed to be a small mass in the right hemisphere of his brain. Sure enough, we met with the neurology team the following week and saw on the screen of his brain a bright area glowing. It was a brain tumor and he was going to have surgery to remove it.

Wednesday, March 30, 2016

Moments and miracles: disclaimer

For quite some time, I've felt impressed to journal about my family's journey in life, particularly about our life now. So, here I am trying to find the words to begin. It's been a long journey from the very beginning. One of beauty, sorrows, surprises, disappointments, humility, but most of all, love. And I am going to write about all of it here. It will be completely raw and honest, straight from my heart to yours.

Why "Moments and Miracles?" Because that is what life is made of; moments to determine who we are and who we can become, and the miracles that if we allow ourselves to recognize them, we can embrace life and grow through His love. So I'll be here, curled up in my fuzzy red blanket with a pint of Ben and Jerry's nearby, as often as my time permits as the caretaker to my husband and children. Welcome to my blog!