Category: Uncategorized

Our First Treatment

The pathology had come back to reveal that Lexi had neuroblastoma- cancer of the nerves. This type of cancer is generally diagnosed in children 5 years old or younger. The doctors said that Lexi being diagnosed with it just a month after her fifteenth birthday was like lightning striking in the same place twice. We learned that the older a person is at diagnosis, the more aggressive the cancer is. Lexi was the oldest patient our team of doctors had ever treated with neuroblastoma by four years. The odds of survival were not in her favor and treatment was started immediately.

I watched helplessly as the chemo dripped into my daughter’s veins. My emotions were a cacophony of chaos as the screaming in my head was outdone only by the shattering of my heart. The doctors had given us the report of the size and location of the tumor. I was in awe, once again, of the strength of my girl. The tumor was largely displacing her pancreas, surrounding numerous blood vessels and arteries, and displacing her left kidney, to name the basics. More than her physical strength I was astounded by her faith. She had her moments of pain and moments of sadness but they were based on temporal things. She had no fear of whether or not she would be cured, none. It was not even like faith, it was knowledge. She knew that if God said it through a priesthood blessing that it would come to pass. It was incomprehensible that a 15 year old girl had this type of understanding and yet she did. It was beyond words and I was humbled to behold such a thing.

Our Journey Begins…

Lexi got her port (the central line that her chemo would go through). It made cancer life a little more real. I knew that over the course of treatment there would be good days and bad days, but wasn’t that part of life? It was not our circumstances that determined our happiness it was our attitude. It would be easy to focus on the difficult days that awaited us or the challenges that we would face. It would’ve been easy to choose to be angry or sad. But, we chose to be happy. We chose to be #alexisstrong

The Night Our Lives Changed Forever

There are some moments in our lives that are so incomprehensible that our minds cannot fully grasp the situation until after it has passed. September 11, 2015 was that day for our family. We took our 15-year-old daughter, Alexis, to the emergency room thinking that her appendix had ruptured. After 13 hours and multiple tests and imaging, her elusive appendix was nowhere to be found. However, it was confirmed that she had an abnormal mass in her abdomen. I was told that the mass looked to be malignant, that word still leaves an acidic taste in my mouth, and that a biopsy would need to be done. We were transferred to the ICS Unit (Immuno Compromised Services Unit – or Cancer Unit) and in my ignorance I couldn’t understand why they would transfer us there. Surely this was some type of misunderstanding. We were not a “cancer family”. We were an active family with no history of major illnesses. This had to be a horrific nightmare that I was sure to wake up from. But alas, there would be no waking up from this dream. We would have to learn not only how to live in this unfamiliar world, but how to find love and laughter there as well.

The Very Details

I have the best job on Sundays – I get to teach a Sunday School class filled with 15-17 year olds. If I’m being honest, they are usually the ones that teach me. Every week I begin the class by asking them how they have seen God’s hand in their life that week. It is a practice I adopted in my own life when Lexi was very sick. Oftentimes I felt bombarded with reasons to not believe in a Higher Being, but I found that as I actively searched for God in my everyday life, He was never far from me. I no longer find myself or my family facing the same type of challenges we have in the past, yet I still need the reassurance and comfort that God is aware and present in my everyday life. That knowledge came in an undeniable way just a few weeks ago as we saw yet another miraculous blessing.

Many times Lexi is asked if she is glad that she is “done with cancer”. With her permission I share her personal response to me. “Cancer is not something that you are ever done with. It is not something you can get over or something that goes away. It took things from me I will never get back, and it is still taking things. Once the bald head goes away is usually the time when you find out the actual price you had to pay just to live. Everyday I have to fight to do things that people take for granted, and I feel blessed to do them. I wish people knew how lucky they really were for their lives.”

Just one of the many unseen side effects that Lexi will forever carry is known as EPI (exocrine pancreatic insufficiency). She is very fortunate for advancements in medicine that allow this to be offset by medication. In addition to other daily medications she takes 5 enzyme pills with every meal and 3-4 with every snack – a process that will need to be continued for the rest of her life. Without these pills Lexi’s body cannot process any nutrition and she begins not only to lose any weight that she has worked very hard to put on, but also ceases to process what has previously been put in her body. In short, it is very dangerous for her to miss even a dose of this medication.

Because of the cost of this medication and the fact that it is not common, we have to pre-order it through our pharmacy. We knew that it was ridiculously expensive, but because Lexi’s medical bills have been even more ridiculously expensive than the medication, we have never had to pay the demanding price tag that accompanies it, until this last refill. Lexi called me from the pharmacy with the news that her enzymes would cost $1300. We were at a loss. We simply did not have the money to pay for the medicine that her body needed. The pharmacy called the insurance, I called the insurance; but to no avail. Although we still had many medical claims outstanding from Lexi’s ongoing specialists and scans, those bills had not yet been fully processed and thus could not be counted towards our deductable. My heart sank. Lexi had enough pills to make it two days while we formulated a plan. The days passed and I still had nothing. I went to the pharmacy and asked if I could possibly do a partial fill of the prescription – enough for about a week’s worth. I was hopeful that by then more claims would be processed thus lowering the co-pay amount or at least giving me more time to come up with a better plan.

Not 5 minutes after I left the counter my name was paged and I was asked to return to the pharmacy. My favorite pharmacy tech motioned to me and said that she had found a website that may help with a co-pay and asked if she could enter my information into the site. Elated at the thought of saving even a little money in hopes of getting more of her prescription filled, I wholeheartedly agreed. I left the counter and ten minutes later my cell phone rang. “Hey Em, your prescription for Lex is ready” said the pharmacy tech. I walked back to the counter to see multiple bottles of the valuable medication. “Your co-pay is $5” She said with a bright grin. “This is her full prescription – all 90 days worth.” I looked at her with tearfilled eyes and shook my head in disbelief. This was too much of a coincidence to be just a coincidence. My prayers had been answered and our burden once again lightened. “I entered your information into the system. Lexi qualifies for their program and she shouldn’t have to pay more than that to get this medicine anymore.” She smiled at me gently and told me to tell Lex hi for her. I left the store with a full heart, a grocery bag full of medication, and an experience of the evidence of God in my everyday life that I couldn’t wait to share with my kids.

I’m a big believer that we will find what we are looking for in life. Some may say that this blessing came as a result of a diligent pharmacy tech, some may say Lexi’s life was saved at the hands of talented doctors and surgeons. While I do not discount the merits of others, I also recognize that I have seen far too many things to just believe in coincidence, chance, or the possibility of a Higher Power that is vaguely interested in our existence. I know God lives and is in the very fabric of our lives.

Here’s a picture of the amount of enzymes Lex takes daily to keep her body working and her out of the hospital ❤️

#alexisstrong

XoXo – Em

Damaged Goods

Anyone who knows me knows that I love to garden: yard work, mowing the grass, pulling weeds, all of it.  My husband thinks I’m crazy but I think it’s therapeutic.  One of my favorite things to do is to by plants from the clearance rack and bring them home to plant in my yard.  There is something beautiful about taking a living  thing that the world has dismissed as having diminished value because it is not thriving the way that it once was, and nursing it back to health. When first planted these flowers need additional love, support and care.  Oftentimes, the part of the plant that is no longer contributing to its growth may need to be pruned. It is a process. However, over time the roots of the plant become stronger and the plant is able to overcome the struggles that once plagued it.  When properly cared for during the most challenging times, these plants produce some of the most beautiful flowers throughout the rest of their lives.

We are much the same way – the world may dismiss us as worthless when we are going through trials and tribulations, but that is simply not the case.  The ability to grow and flourish still resides within us.  We simply need to plant ourselves in good ground, be sure we are getting the nourishment we need to thrive, and be patient with the process until the time comes when we feel as if we can once again bloom where we have been planted.

XoXo – Em

First Podcast Ever!!

Alexis and I were given the opportunity to be guests on the podcast “Life Without A Manual”.  It’s hosted by Cruz Soto who happens to be an amazing guy who has overcome some pretty difficult challenges in his own life but has refused to let them get him down.  We told him beforehand that we were willing to answer any questions he may have and the following is the result 🙂  Hope you enjoy it!

XoXo- Em

https://m.facebook.com/story.php?story_fbid=328989794299652&id=281718535693445