Life after 2009 continued on. We had finished school and had the birth of our beautiful daughter Lily in March of 2011. A few months after she joined our family, we decided to have another child and I found I was pregnant in September of that same year.
September was a big month.
Throughout the past couple of years Tony continued frequent doctor visits and had brain MRIs to watch the "hole in his head." With his tumor removed, that area of his brain remained empty filled with brain fluid. Now there is some real truth to him being empty headed ;) Landon and Emma (both positive for LFS) underwent annual screenings as well. It was in September that we had Lily tested for LFS and her results came back negative- she did not have LFS. Upon hearing the news, my heart was filled with peace- not necessarily because she was at a normal lower risk for cancer like the general population- but because I knew she was meant for our family. God had blessed us for continuing our faith in His plan and in His timing. It really is a jump of faith to make many decisions in life; I'm sure you can attest to that as you are reading this. But what a tender mercy it was for Tony and me to feel the increase of love after the trial of our faith. And with hindsight, I know that my Heavenly Father knows me personally because He was preparing our family for what came next.
(With the good news about Lily, we now had the opportunity (and challenge) to decide how we were going to approach the topic of LFS with our children. It is completely false and depressing to view ourselves as "plagued" or "cursed" with the LFS gene. Tony and I had to begin to make choices on how we were going to teach our little family so that no child felt more or less than any other. This I will discuss at some later date but is something that has increased my views of what self worth and esteem really are.)
Just after her second birthday, Emma had a brain MRI shortly after Landon had one. Everything on Landon's scans looked normal and healthy. Now for these scans our sweet little children have to be sedated until they can learn to hold very still for longer periods of time. So up until the age of six or so, Landon and Emma (as well as others with LFS) are sedated at Primary Children's Hospital for the brain and full body MRI scans. We have had some memorable times on these days; it's been a fun opportunity for our children to have a special "date" with either Dad or Mom. And it's pretty darn funny to see your child when they wake up from sedation-- everything they do is so cute and hilarious. Try watching your child drink from a straw or try to walk when they can't even fully open their eyes! But it is also a sombering experience. Watching your child unconscious, strapped to a bed with several breathing monitors hooked to their chests, and then put into a huge machine while you have to leave their side is difficult. You feel helpless to whatever they may find; there is no way to protect them from any future ailments. And as a parent, it is constantly humbling to drop to your knees and ask for the strength and courage to allow your heart to trust in God's will for your child.
When our doctor came to discuss the results of Emma's MRI scans with us, he looked a little nervous. He started by saying that everything looked normal and healthy in her body but that there was a small "spot" in her frontal lobe of her brain about the size of a dime. He didn't want to speculate and assume so he took the scans to a tumor board and to pediatric specialists to enlist their opinion on the matter. No one was sure of what the small group of abnormal cells were but all agreed that it could potentially be a tumor. Our hearts dropped when we thought of what could happen to our Emma who was as close to her father as any daughter I have seen. She was just like her dad- a cute little clone of Tony with blue eyes, thick wavy blonde hair, and the strongest will to tease everyone around her!
Much was unknown about Emma's "spot" so we agreed to repeat another brain MRI in six weeks to see if any changes occurred. During this time Tony had a routine scan as well. At this point it had been almost three years since Tony underwent surgery to remove his brain tumor. Still in the month of September, the results of Tony's scan showed an increased "glowing" in the area where his tumor once was, meaning that new growth was taking place in the same area as before. Now this was not a shock to us. You might wonder "well if they removed ALL the tumor during surgery, how could it come back?" and that is a very good question. We had known from the beginning that, although we caught Tony's tumor in a very early and less aggressive stage, it would continue to come back despite any treatments. The treatments Tony undergoes is to delay its growth and keep it at bay as long as possible.
Tony's tumor was "back" and my daughter had what potentially was a brain tumor as well. Two brain tumors. It was a lot to take in. We both had mixed emotions at first about the news. I remember feeling worried, confused, anxious, but intermingled with feelings of gratitude, hope, and strength. Together we could work through this difficult time and felt it was an opportunity to strengthen our marriage and to add to our faith. The day we received the news Tony cried in my arms and my tears fell on his head. It would be hard to face Tony's health but how were we to handle Emma? She was our tiny two year old, full of life and with hopes and dreams ahead of her. There were many nights spent on our knees, pleading for understanding until Tony was blessed with greater knowledge of our Father's love for us all. If something was to happen to Emma, Tony asked if she would be taken, He would go in her place in a heartbeat without any reservations. Tony recounts this experience by this simple statement he said in prayer, "Please take care of my Emma, she is my daughter and I love her and need to protect her." And after expressing these feelings, the thought entered his head, "I know she is your daughter but Emma is my daughter as well. Don't you know how much I love her?" When Tony told me of his experience, it was an answer to my prayers as well. God loves us perfectly. He understands our hearts and wants to bless us, even with eternal life! How wonderful that is! And if he understands our souls and is working toward our exaltation, won't everything we experience be to our benefit? God is perfect, so isn't His plan for each of us perfect? Doesn't He know what is best for Emma, even more than what we feel is best for her? The moments I am reminded of this are the days when my whole body is filled with peace. When we allow ourselves to accept our situations and then remember that it is all for our own good, it is then that we can place in in our Savior's hands. His yoke truly is easy and His burden is light.
As time went on, it was decided that Emma's spot was in fact a brain tumor, one that would be difficult to operate on. Without a biopsy, we are unsure of the characteristics of the tumor cells so we do not know exactly what we are dealing with, but have continued monitoring it to the present day every six months and NO changes have occurred in her tumor. There is no growth which is the best news we hope for our Emma. And no matter what is to happen in the future, we can face anything with Jesus Christ, for it is only through Him that we can find lasting peace and happiness. And I pray that if my children can understand this one principle, their lives will always be filled with hope and comfort.
It was determined that Tony's tumor was still a grade II astrocytoma but some treatment needed to be done in order to kill the growing cancer cells and stop any new growth. The following week we met with a large team of doctors to discuss the best treatment plan. A repeat surgery was suggested by Tony and myself, as we were wary of radiation and chemotheraphy treatments. With LFS, there is an increased chance that secondary cancers can develop because of cancer treatments, particularly that of chemotherapy. But the doctors, even at this early stage of his tumor, began talking about quality versus quantity of life. They felt that another surgery could potentially increase his paralysis on his left side, even to the point that he would be unable to walk. His doctors strongly felt and all agreed that radiation would be a much more efficient treatment for Tony. So with the plan in place, Tony began radiation treatments that lasted for six weeks, Every weekday, Tony and I would make the 45-minute drive up to Huntsman and back. Treatment only lasted about 15-20 minutes and was painless for him. Fortunately he only had minimal side effects: a bit of tiredness and the loss of his hair. One morning, about three weeks into his radiation treatments, Tony was showering. As he washed his hair huge chunks of hair started falling out right around his scar from his incision from surgery. We both laughed as hair remained intact on the rest of his head: we still today joke that he looked like a dalmation with spots of baldness and patches of hair. So we shaved his entire head and it's a good thing he makes a handsome bald man ;) It was a tender experience to have so much time together riding in the car. It gave us several opportunities to have deep discussions about faith, our family, and the future and we also just had fun laughing and singing in the car.
After Tony finished radiation treatments toward the beginning of the holidays, the results showed that the treatments were successful and killed the tumor cells! It would be another four years before we encountered any problems again. Since Tony's tumor had already come back once, the reality of Tony's health hit home. We knew it would come back again but had no idea when that time would come. Looking back, I am so thankful for the experiences we had so that we felt confident in continuing to live our life to the fullest. In the following years, our pretty Sophie was born in May of 2012, followed by our little ginger Tanner in November of 2013. Both children were tested and Sophie was positive for LFS and Tanner was negative. To this point, 3 of our 5 children have LFS like Tony and we continue cancer screenings for them and all have been blessed with good health.
In February of 2015 we had a strong impression to have another child and I was blessed to carry a baby girl. It is here where our story is brought to September of 2015, a time that has proved trying for our family but has blessed us beyond our comprehension.
