Tonight I am writing to you, dear readers, as an assignment for an online class I am taking.
Also, I know it has been a reeeeeeeeeeeaaaaally long time since I write anything for you. I think about writing all of the time. In fact, I have several unwritten posts swimming around in my head right now. Alas, I struggle to find the right words to recap life as it has been flying by since I last left you.
For tonight, suffice it to say, life has been really hard.
If you don't know, almost a year ago, our youngest baby boy, Andrew, was taken to Phoenix Children's Hospital and was admitted for a week. During that week we were given the diagnosis of Cancer (Neuroblastoma) and a secondary disease called OMA or OMS (Opsoclonus Myoclonus Ataxia/Syndrome) Neuroblastoma, if found early on, is easily treated. When in the beginning stages, the tumor, if very small and not interfering with any organs, can be removed and the cancer is gone. This was Andrew's situation. I can not express just how grateful/guilty/stunned I am that this was the case.(Guilty because of the countless others whose luck was not as good.) The secondary disease, however, is proving to be much harder to treat and eliminate than we ever would have imagined.
OMS is a neurological manifestation of an auto immune process. (Fancy words = too much time talking with doctors and reading medical journals.) What this basically means is that Andrew's body began creating antibodies to defend itself from the neuroblastoma tumor that resided in his adrenal gland. This tumor was made of nerve cells; the same cells you will find in your brain. Consequently, Andrew's tumor killing antibodies began sending in troops to fight nerve cells. A.K.A his brain. So this caused all sorts of trouble for Andrew. He lost his ability to stand, sit up, hold his head up, pick up small objects, and focus his eyes. Essentially our 1 year old turned back into an infant right before our very eyes. And later we would discover that the rage he was showing had much more to do with his disease than it did with just being an angry kid.
After the tumor was removed, there was some hope that the symptoms of the OMS would subside. They didn't.
So, we began the long treatment process with his amazing doctor at the PCH East Valley Clinic for Cancer and blood disorders. On a daily basis, Andrew receives anywhere between 3 and 6 medications (depending on time of month and days of the week). This includes a steroid called Dexamethasone, Zantac to reduce stomach acid, and a tranqulizer/sleep aid called Trazadone. Monthly he receives a supplement called IVIG, which is an IV infusion of antibodies He also receives two medications via IV designed to suppress his immune system. These are Rituximab and Cyclophosphamide (chemotherapy). He also is given Benedryl, tylenol, and Zofran to counteract the side effects of the drugs. On top of that, he takes antibiotics every weekend to prevent him from developing pneumonia. Suffice it to say, we have a little pharmacy in our kitchen. And even I have to read labels and doses before giving it to him (even after a year) in order to keep things straight.
Through this last year's trials, I have felt every emotion possible. (It seems.) I have felt fear and despair as I held my deteriorating son for hours on end in a hospital where doctors had only read about Andrew's disease, much less treated it. Despair is an emotion that sucks all hope from a situation. And although the sun did rise every day that we were in the hospital, my memories are dark and painful. There was so much fear for the future. So much sadness for this little struggling life. So much pain for his suffering as he clung to the only thing he could - his mother and father.
I felt resentment and anger and wondered why this was our burden to carry. I prayed for guidance and leaned on my faith to keep me from completely losing it.
I felt joy and happiness when the tumor was removed and when Andrew would look at me and smile or want to play with a toy.
I have felt frustration as I have discovered that this is a rare disease and all of the cases are a little different, so treating the disease is not always the same for every child. I have felt frustration when I am trying my hardest to make this little boy happy, but because of his disease, he can't be made happy. Instead, he screams and thrashes and becomes violent.
I have felt elation when he got up on his knees for the first time after the hospital and started to crawl one heavy, labored inch at a time.
I have felt dread when we take Andrew to the clinic for his treatments.
I have felt the love of God when, having had little to no sleep for a week and returning home with more questions than answers, I placed my screaming boy in his crib with a desperate plea in my heart that someone could comfort him. Running to the edge of my bed and falling on my knees with a fervent prayer that comfort could come to him somehow. Then knowing, without a doubt in my mind or heart, that angels were with Andrew. Calming him and taking care of him in ways that I couldn't.
I have felt gratitude. For so many things. For Andrew's improvements, for his victories, for the lessons we are learning, for doctors that are smart and inspired, for everything. Our family, our home, our life.
In my Book of Mormon class, there is a short video of a talk by President Dieter F. Uchtdorf (First Presidency of The Church of Jesus Christ of Latter-Day Saints). He speaks of being Thankful in all circumstances. He talks about Nephi when his brothers, Laman and Lemuel, tie him up on a ship in the middle of a huge storm. They leave him there for three days, and at this point Nephi is really in a lot of pain. But Nephi says, "Nevertheless, I did look unto my God, and I did praise him all the day long. And I did not murmur against the Lord because of mine afflictions."
And he talks about how we have a choice in how we act in our circumstances. I believe with all of my heart that we have the power to choose. I can choose. Some days it is really hard to "Be grateful no matter what" but I am trying. And that's all God asks of me. Try.
So Andrew is gaining traction over this disease, and we are over the moon about it. And we're grateful especially because we remember where we came from. We remember who is watching over us always. We know that Andrew is God's as much as he is ours, and that through him, great miracles can happen. We are grateful to be in these circumstances that have stretched our souls to the max and tried us in the fire of our afflictions. For that, I will always be grateful.
