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.
