Monday, April 25, 2016

The bare necessities of life will come to you

This is a picture of our six children when we went to go see "Jungle Book" with one of Tony's coworkers last week. Our kids loved it!

I was thinking about the lyrics to this song as I was browsing through my pictures on my phone yesterday. "The bare necessities of life will come to you." I've always thought this was a song about laziness and living the "easy" way in life, just floating around without a care in the world. And for Baloo, it may be that way. But that is not the case for our family.

The past several months and even extended to Tony's initial diagnosis back in 2009, the bare necessities of life have not just "come" to us with no thought or care. It has been YOU who has put in so much love and work to help our family; it is by no coincidence that we have been blessed beyond measure.

Recently our kids have been spoiled. We received many anonymous Christmas gifts over the holiday season, we received a (may I say super cool!) play set for our back yard. Movie nights, yummy meals, fun yard working days, outings, lunch dates, help with driving Tony to treatments, prayers and fasts, treats, having our kids over to play at your house... all of these things have spoiled our children--- in a very good way. They are able to offset any distress in our family by these great memories they are making with us and with you. And all because you wanted to help. For that, I sincerely say thank you.

When Tony was in the hospital longer than expected, I felt I needed to leave one night in order to be back at home with our kids. We both were at a very emotional state as we wanted so much to be home as a family, yet nothing was falling into place to allow Tony to leave. Before I left for the night, Tony needed help with getting ready for bed and he checked his Facebook account before handing me his phone to be charged for the night. He glanced up at me with tears in his eyes and without saying anything, handed me his phone. One of his seminary students had started an online fundraiser for our family and it then quickly started to exceed the goal amount of money they wished to raise. Over the next few days, I saw many people I knew, some that I had never met, and many anonymous donors pitching in to help our family. There are few moments where I have been so humbled. Tears streaked down my face every time a donation was added, many in amounts that must have been a sacrifice for their families. We were reminded of the story in the New Testament, the widow's mite. Donations in amounts of $5 by students taught me great love and sacrifice; their contributions are great in our eyes. I stand amazed at the gift of love from you. Please accept my heart-felt thank you.

I can't relay everything that has been done to help us. There is so just so much. I desperately want to hug everyone who has helped us and tell you personally what it has meant to us. But I know my words fall short of the gratitude Tony and I share. There is no way to express it but I hope this can be at least a small token. We have bound our hearts of gratitude to yours.

The bare necessities of life did not just simply "come" to us, God has worked through your hands to aid our family in our time of need. We have spent several hours pleading on our knees praying for help and you have been our answers. There is no way someone goes through an experience like this without the support of their family, friends, and community. We feel your prayers raising us up, giving us strength to push forward and fight.

One of the greatest insights I have recognized so far is the need to be humble. With six young children and a husband who is sick, I can't do it alone. But I desperately want to do it alone! I want to be supermom and "the best wife ever" who can keep everything together and flowing smooth during this time. I don't want to show my tears and my worries, and I definitely don't want to be needy or a burden. I don't want to be that way because of praise, I just want to be strong enough for my family.

I cannot be that person. No one can. During a time like this, we all bond together and buoy each other up. There are only so many hours in the day and always so much to be done. I thank you for stepping in when I physically cannot.

We have to learn to accept help. It is so hard. So, so hard. Really, it is something I have struggled with learning. But it is necessary. Humility is the only way we can access the Atonement of Jesus Christ, the gift that is ours if we choose it. His gift is the only way to be happy, to have peace, to fully love, and to one day, have a complete fullness of joy. We learn from Him as we are humbled to be helped and in turn, our hearts are moved as we choose to be humbled to help others.

So, the bare necessities of life did not come to us by floating down a river on our back, watching the clouds go by. They came through you and, most importantly, through our Father in Heaven.

Sunday, April 17, 2016

Brain surgery... #3!

The beginning of March. Another surgery. A more aggressive tumor. A true reality check.

It is March of 2016 (only five months after the most recent surgery) when we decided with our brain cancer team to perform surgery again. This time we were both nervous about the after effects of the operation. Since chemotherapy alone was not working, we felt it best to be very aggressive in treating the cancerous tumor. But being aggressive in the surgery had high risks of changing Tony's quality of life. His surgeon was very concerned that Tony's arm and even his speech would be impaired. There was a high possibility that he could lose all use of his left arm and hand (which already had very limited movement and strength) but this was nothing that worried Tony. The risk of his speech changing was what really worried us both. Slurring from facial weakness and drooping on the left side of his face could potentially cause Tony to have some difficulty in being understood. The surgeon hoped nothing would be changed but forewarned us of the high possibility. That week Tony began an audible journal by recording stories about himself and our children on his phone's recording capabilities. If something were to happen to his voice, all he wanted was for our kids to hear his own voice telling them how much he loved them each individually. Next to that, Tony deeply wanted them to know that he has a testimony of Jesus Christ and His atonement, and that this is the only and ultimate way to find peace. We all prayed fervently that Tony would be able to speak as usual and gave the rest of our worries to God.

Looking back to last month, I should have asked the surgeon if he had a "buy 2 get, 1 free" brain surgery package! ;) We are definitely keeping him in business.

 As Tony was wheeled out of the room for surgery again, I wasn't too concerned about thoughts of Tony's skull be opened and people prodding in his brain like I was the first two surgeries. The thought of that didn't scare me anymore and I had full confidence in the surgical team. But what I had worries about was what Tony would be like after the surgery was over. Would he be able to talk as usual? How was our life going to change when we got the biospy results? What was our next step in treating his cancer? Did we finally hit a point in this journey where "getting better and back to normal" would no longer be a realistic possibility? Could I bear to see Tony in pain and frustration if he couldn't speak efficiently? We all know Tony is a talker, and losing this ability would be a very difficult loss for us. I wasn't ready to miss his voice and his laughter. Sweet little Amelia came with me to the hospital the day of the surgery to keep me and other family members company. Kissing her soft chubby cheeks and holding her dimpled tiny hand eased my anxieties about the future. As she peacefully slept in my arms for most of the morning during the operation, her quiet sighs spoke to my worried heart, and I felt blessed to have her with me. Everything was going to be okay.

Tony's surgeon pulled me and family into a room as soon as the operation was over. My heart was pumping and my hands started sweating as I waited for him to tell us the news. First, he had great news! The tumor was efficiently removed, so much so that they feel "everything" bad was taken. And then he had even more great news. When Tony woke up from surgery, the first thing we said was "I can talk! And I can move my arm! And I can lift my leg!... (and again)... I can talk!" If doctors had the word "miracle" in their vocabulary, that would be exact word he would say to us. It was a miracle that Tony's speech was exactly the same. We were in awe. Not only could he speak with no problems but he also could move his arm up and down (with very little control, and there was now no movement in his hand and fingers) and he could walk (with assistance at first but he improved over time and can now walk slowly on his own). We were truly blessed. I was so happy to have my Tony still with me.

 After being discharged from the hospital, we received a call from the surgeon with the biopsy results of the tumor. First off, Tony's tumor was the size of a tangerine (!), which was about double the size that it was before his second surgery in October, meaning despite surgery in October and four months of chemotherapy, it had still managed to "grow back" and double its size. And then he had the bad news. Tony's tumor had progressed from a grade III tumor into a grade IV tumor, called a glioblastoma, or also known as GBM. We were hoping and praying that this wasn't the case because this meant the cancer had turned much more aggressive. Glioblastomas are terminal. There is no cure. After seven years of treating his brain tumor, it had finally advanced to this state. We had prepared ourselves for this day since 2009 but now I couldn't believe it was here.

We were all glad to have Tony back home. The kids made a welcome home sign and I even checked Landon and Emma out of school early to greet him. Because of his new handicaps (his left arm had no control and his left hand had no more movement, his walking was very slow and unsteady because he had no control in his ankle) Tony had spent a couple of extra days in the hospital before they discharged him. I had cried a few times because I wanted all of us to be back home together again, I was homesick for our kids but wanted to be there with Tony as much as possible as well. I hate being torn between the two, and Tony is always very understanding that we take care of our kids' needs first. But as his wife I am very concerned about him as well. It's a terrible feeling. Being at home all together brought a special spirit of peace and completeness. The next couple of weeks Tony spent much of his time sleeping and resting. He was very exhausted and too much stimulation caused stress and anxiety so we have been working together with six little ones to try to promote a healing environment.

 About two weeks after surgery we again met with Tony's neuro-oncologist to discuss the next step of treatment. We were all pleased with the results of the surgery and hopeful that further treatment would buy him more time. Radiation for six and a half weeks with simultaneous chemotherapy was our next plan of attack. We are now two weeks into treatment and Tony will finish on May 18th. We want to keep this tumor from growing back as long as possible! His tumor must get its stubborn traits from Tony ;) Both forms of treatment together would give us the best results-- more time. Time really is invaluable. It is precious. It can never be replaced or re-lived. Time has now become a serious of moments; moments filled with miracles and the beautiful things in life. I watch Tony as he lovingly and gently smiles at our children and kisses their cheeks. I see him taking in the beauty of the mountains and the sky. Life is slow and still for him. We have been blessed to have our eyes opened, our hearts enlarged, and our souls to sing. He lives! Because Jesus Christ is our Savior, we can live again. We can be bonded to our family for eternity. We can feel His perfect love and will one day be able to love perfectly. No matter what the future holds, our family will continue to find immense peace in these truths. It is the only way we grow stronger when we have difficult things placed on our shoulders. Only Christ can increase our strength to handle such pain and sorrow, and when we feel we can bear them no longer, He can lighten the load.

Today is April 18, 2016. According to the medical world, my husband is dying. But to me, Tony is living. He is here. And I believe that miracles do happen.

Wednesday, April 13, 2016

Brain surgery #2

All had been going well for almost four years after finishing the successful radiation. We now had Landon (age 7), Emma (6), Lily (4), Sophie (3), Tanner (almost 2), and I was a few months from delivering baby Amelia. Our life was turning out as "we planned" it--- our family was growing and Tony had a wonderful job working as a seminary (religion) teacher at a high school close by for The Church of Jesus Christ of Latter-day Saints (LDS church). Tony's tumor had continued to remain stable for such a significant amount of time and his adaptations to the left side of his body for daily tasks seemed almost second nature to him. All was well in the Means household.

It was Labor Day weekend when our happy little family would have a big change. We had spent Saturday cleaning around the home and doing yard work as a family. I was getting the kids bathed at this time when I heard Tony call for me; he explained that something weird was going on. He sat on the couch and showed how his thumb in his left hand began making a "ticking" motion, and as it continued, my face went pale as I saw the left side of his face slightly droop and it began the same ticking motion as well. Immediately Tony knew something was wrong and Lindsey (my sister-in-law) grabbed her car keys and I grabbed my wallet and started out the door to take him to the E.R. Looking back, I was so grateful that my father-in-law was with us that day as well as Whitney, our close friend. Thankfully they were able to finish bathing the kids and get them to bed while we were gone. As we were driving to the hospital, Tony's face began "ticking" so much so that he was having a difficult time speaking and swallowing. And of course at this point he began making fun of himself in some sort of blubbering fashion as drool fell off his lips down his chin. That's my Tony for you!

As Tony was checked into the E.R., saw the doctor, and had a brain scan, the doctor there concluded that Tony was having "muscle spasms" as he couldn't see much in the image of his brain. Tony was sent home with encouragement to follow up with his neurologist at Huntsman and get an appointment there. Unfortunately with it being Labor Day weekend we somewhat brushed it off and decided we would call Tony's doctors if it happened again. And sure enough, the next afternoon Tony had another episode of "ticking" in his hand and face, lasting for about 10 minutes. At this point our concern grew so I sent an email that night to our doctor who handles our overall cancer screening care for our family. Let me just take a quick moment to say how wonderfully blessed we are to be working with this man and his team! He not only helped us with our situation right away in the morning but it was a holiday weekend and he was sure to take the time to take care of us. Our doctor put him in touch with Tony's neuro-oncologist (who was not on call that day and also took time out of his day off) and immediately showed his concern for the situation. We were told that these twitches were not spasms but likely seizure activity, and that Tony needed to be seen very soon to see what was happening in his brain. It was that week that showed Tony's tumor was growing again.

And just like that, our lives took a path down a different road. We were no longer concerned about which activities to enroll the children in, When we were going to buy a home (or if we wanted to continue to rent the home we currently lived in), Making sure homework was turned in on-time, or trying to keep our home spotless (which can be tricky with a lot of little kids running around!). Life handed us a reality check, Not one about how much time we had left together on this Earth, but a strong reminder to re-evaluate our lives. Were we living life with real purpose? Were our priorities in the right order? Where did we need to make improvements in our parenting and in our relationships with those we cared about?

Within a few weeks, Tony was scheduled to have surgery again. I'm so thankful for so many people pitching in to help us at this time, especially my mom who flew out to care for the kids while I stayed with Tony at the hospital. The morning of the surgery Tony seemed more at ease about the procedure than he had six years ago, we both thought the side effects of the surgery would be minimal and that he could be back to work within a few weeks. But a curve ball was definitely thrown at us! The following night after surgery, I laid down on the vinyl daybed in Tony's hospital room to sleep for the night. Within a few minutes I heard Tony call my name. Worried he was experiencing a great amount of pain, I quickly asked if he needed the nurse. He then looked at me and pointed to his thumb and then to his face, which all began to twitch. Thinking it would pass soon, I watched and waited for it to subside but it continually grew a bit stronger until he was having a difficult time speaking, so I called the nurse in. She seemed in a bit of a panic and promptly called the neurologist who was on call. In order for them to stop the seizure they gave him a very high dose of an anti-seizure medication through his IV and he was knocked out for the rest of the night, with the seizure finally subsiding after two hours. Now since Tony's seizures are so minor it would be assumed that they have little effect on his body but unfortunately that is not the case- these seizures exhaust him both physically and mentally. The two hour seizure along with the high dose of medication made him so sleepy that later in that week he recalled that he didn't remember what had happened the entire next day. I have to laugh because we still had (short) conversations, he chose his meals and even ate them, and he even spoke with our children when they visited him later in the afternoon. Too bad I didn't make him do some fun and embarrassing things to hold over him for awhile ;)

Even after coming home, Tony continued to have minor seizures which became difficult to keep under control, even to the point that he was again admitted to the hospital for a few days later that month. This hiccup made his return to work a very slow and gradual process, and Tony experienced a lot of frustration over the lack of control of his body that he was feeling. He wanted so much to be fully functioning again, and from the outside appeared so but anyone who was around him for more than a few minutes could see that Tony wasn't capable of holding long conversations with others, let alone teaching for a full day to high school students. Thankfully, overtime, Tony began to heal and was able to return to work to almost a full day, even with continued seizures happening. His seizures continued on a few each day until March of this year.

The great news is that the surgery was successful and the surgeon was able to remove a significant portion of the tumor. Biopsy results came back grading the tumor to have progressed to a grade III astrocytoma, also known as an anaplastic astrocytoma. More aggressive than the grade II tumor from previous surgery and radiation treatment, we knew further treatments would have to take place in order to keep the tumor from "growing back" and getting larger. The day we met with Tony's team of doctors at Huntsman was very nerve-wracking. The idea of chemotherapy had been discussed prior to his surgery but made us very nervous. All of Tony's family members who had chemotherapy treatments still died of their cancers, and he had heard horror stories about the effects of chemotherapy. See, with the LFS mutation Tony and his family members have, their chances of getting a secondary cancer from chemotherapy treatments is greater than the general population. Chemotherapy is something we have learned to grow a "healthy respect" for, meaning we understand the benefits it can have but we are also very aware and cautious of the possibility that new cancers will manifest themselves. In November, it was decided by his team that chemotherapy would be the best course of treatment, and he began immediately. The chemotherapy drug used to treat Tony's tumor is called Temodar, an oral pill that is taken at home. Each month, Tony would take his chemotherapy for five nights in a row and then have 23 days of recovery, followed by the same 28 day cycle (hahahaha, just like us women!) the next month. After two months of treatment, it appeared as the glowing and swelling in his brain around his tumor area had decreased, so he took another two months of the chemotherapy treatment. Side-effects of Temodar were much less severe than we thought! Tony experienced a lot of upset stomachs and even more fatigue, which was kept under control by anti-nausea medication and naps after school :)

Right in the middle of his four month treatment we had the best gift given to us after Christmas. It was our sweet Amelia Rose, born in the middle of the night on Tony's birthday! At 1 am on Tony's 31st birthday, we were given a beautiful blue-eyed baby girl who has become my constant tender mercy from Heavenly Father. She has the chubbiest cheeks and a smile that melts your heart, and there had never been a baby who is constantly loved on by her older siblings than our baby Amelia! Through all we have experienced so far, many people have expressed concern for my caring for everyone while taking care of a newborn. From outside our home, I can see how a newborn in our situation could make family life much more stressful and chaotic, and to be honest, sometimes there are overwhelming moments. But my Heavenly Father knew we needed her in our family-- for Tony to share a special bond with her, for the kids to see a miracle happen in our family- the miracle of a baby, and mostly for me (that sounds so selfish but I promise it's not!). God knew I needed Amelia to hold, kiss, and rock late at night. He knew she could quiet my fears and worries for Tony and our family and our future. He knew that her presence would remind me of the leap of faith we took to have her-- and now I see how blessed we are for listening to Him. Amelia needs us but most importantly, our family needs her. She is my tender mercy and my little angel who is with me always to comfort my heart. I am so thankful. I am truly blessed. And she is a constant reminder to me of her daddy.

 A few days before the end of February, Tony had a brain MRI to see how the chemotherapy was working. Normally I try to go with Tony to all his appointments but as our family has gotten larger it is more difficult to find others to watch all our children for such a long period of time. We always have friends and family offer to help watch the kids but I always feel guilty asking someone to tend them for an at least 5 hour block of time. Figuring everything was getting better for Tony's health and that the next plan was to take another two cycles of chemotherapy, Tony went on ahead to his appointment alone. I was walking into the dentist office for the kids' checkups when he called me.

It was not encouraging news. I felt awful that I wasn't there with him.

His tumor appeared to have doubled in size in comparison to his tumor before surgery in October. So not only was it growing, but it was growing quickly. Tony's doctor suggested that if no action was to be taken, his tumor could likely be 1/4 of his brain within two months. ONE FOURTH. This was something we kept a bit more private because we didn't want to assume the worst until we knew for sure what was going on. The only way to know for sure how his tumor had changed in aggression was to have surgery performed, which would give us a better plan for further treatments. His doctor set an appointment to make a final decision for the next week after he had taken Tony's case and discussed it with many brilliant minds at a tumor board meeting. So a week of anxious waiting began.

Sunday, April 10, 2016

September brings 2 brain tumors

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.

Monday, April 4, 2016

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!