Get your tissues out, girls, because today's edition of What I'd Like For You To Know will take your heart for a spin. If you're new here, the idea behind this series to is to allow women to share something about a specific life challenge or circumstance, addressing some of the misconceptions and (most importantly) telling us all how we can reach out better. Today I've invited Anissa Mayhew to tell us her family's story. Please be sure to see the important note at the end of this post.
When Shannon asked me to be a part of the “What I’d Like For You To Know” series, I was so honored. I’d read the other posts and found myself so engaged and touched by their honesty and willingness to just put it all out there. I felt very humbled by their words. T o be allowed to share my words with you is a gift from Shannon, one for which I am very thankful. Please bear with me, as this goes a bit long.
If I had known that July 12, 2006 was going to be my last “normal” day as the mom of three healthy kids, I would have held tighter to each precious moment. In June of that year, my kids had shared a summer cold…a virus that ran its course through the bodies of my older two children, yet lingered in Peyton’s 2 year-old system in the form of a low-grade fever that she couldn’t seem to shake.
Can I tell you how NOT worried I was about that fever? So little that three weeks later, it took two nights of her waking in indefinable pain for me to take her for her third visit to the pediatrician. I’d been told it was a virus. I’d been told not to fret about the fever, that it would go away in time. I’d been told that there was nothing to worry about.
They were wrong.
“We’re going to take some blood and run some tests, she looks a little pale. She could be slightly anemic or it could possibly be something like mono.”
They were very wrong.
The morning of July 13, the constant ring of telephones interrupted my peaceful sleep. First the house phone rang. Then my cell phone rang. The house phone rang again. It never crossed my mind to associate those frantic phone calls with the doctor’s visit from the previous day. Never. How could it? I was still blissfully unaware of what answering that call was going to do to our lives.
“Mrs. Mayhew, the doctor would like to speak to you.”
Those words jarred me awake faster than any other 10 words in the dictionary of the world. The doctor wants to speak to me? The doctor DOESN’T call you at home. Why would he want to call me at my house? Part of my brain, a part functioning in deep denial, tried to comfort the rest of my consciousness with thoughts of clear test results and diagnoses of anemia.
The phone call itself was short and direct. I needed to get my daughter to the children’s hospital. I needed to pack a bag for her and me for at least a week. Her test results came back abnormal. We already had an appointment with a pediatric oncologist.
WAIT! Wait right there. I know that word. I know what oncologist means.
“What do you think is wrong with her? Does she have cancer?”
His quiet affirmation stopped my heart.
I don’t remember hanging up the phone. I don’t remember walking through the house. All I remember was kicking my sleeping husband in the butt and sinking to the floor, wailing, “She’s sick. Peyton’s sick.”
She had cancer.
The bouncy child that was never without a smile and a giggle had cancer.
The next hours were filled with phone calls, packing, dropping off my older two kids…a long quiet drive to the hospital with our hearts pounding and questions whirling through our heads.
A battery of tests answered our questions. Peyton was diagnosed with Pre-B Acute Lymphoblastic Leukemia, CNS positive. Unlike other cancers that concentrate in one part of the body, hers was a blood cancer that was everywhere throughout her body, including her spinal fluid and possibly her brain. The day of her diagnosis, her bone marrow was 96 percent cancer cells.
Her body was losing.
I’ve tried a thousand different ways to describe what that day felt like. They all fall short.
I cannot fully explain the pain that I felt, except it was excruciating.
There aren’t words available to relate the fear, except it was overwhelming.
My heart raged at God. How can you do this to my child? My baby? What has she done to deserve this? I begged to take it from her body into my own, but as the reality settled in, so did the knowledge that no amount of pleading with God was going to make this go away. This was His plan in our lives and it was our job to find our way through it.
On July 13, Peyton began a two and half year long regiment of treatment that would include toxic chemotherapy drugs that drained her body, stole her energy, took her hair and robbed her of a childhood. She underwent cranial radiation that leaves the door wide open for learning disabilities and neurological problems. Everything we have done to her creates the possibility for secondary cancers, because all the treatments are carcinogenic.
But at this moment, the cancer is gone.
It’s gone from her body but never from our hearts. I have yet to discover the secret to forgetting the numbing fear that accompanies the knowledge that your child could die. Her brother and sister understand that to the best of their ability. What I wouldn’t give for that to never have touched their lives. My husband and I have held each other, crying from the depths of our souls, more nights than I can count. I don’t think a day will ever pass me by where I don’t wonder if the cancer is going to come back.
She finishes up her chemotherapy treatments in October. We’ll be leaving behind its schedule of spinal taps, bone marrow aspirations, needles in her chest, back, fingers, and legs….the blood transfusions, the syringes of medicine, the pills.
We hope. We pray.
I know this seems long already, but Shannon wanted me to talk to you about what I wish you knew about being the mother of a child with cancer. These are the things that I wish someone had told me going into this life, so that I could have told my friends and family. Honestly, I think it would apply to any situation that involves a life-changing diagnosis.
- Don’t feel guilty because it’s not you; don’t think that we would ever want you to be in our shoes.
- We may be sad and under a heavy burden of fear and anxiety, but we also need to laugh and be silly. It’s OK to make jokes and share the same friendship we always have.
- We still want to hear about your life. Don’t feel like you have to compare whatever problems you have on a scale with what we’re going through. We GET that we have it bad. We don’t need to hear words like “but it’s nothing like what you’re dealing with”. It’s not fun to be the crap-meter by which everyone else measures the misery in their lives.
- It’s OK to not know what to say. There are times that we don’t want to hear platitudes or quaint phrases. Feel free to hug, offer your prayers, and just be there.
- Ask your questions. If you understand what’s going on, you are going to be able to grasp what’s going on in our lives more fully and you’ll be a better friend for it.
- If we have other kids, take the time to ask how they are doing as well. If they are present, remember to talk to them too. They are so often going to be shuffled to the background; their needs are going to go unmet. Gifts or cards or simple attention are going to be treasured reminders that they are loved as well.
- If you want to do something to help, just DO IT. Asking what you can do to help, reminding us to ask for help is useless. We can’t think that far ahead. We don’t plan. We can’t remember what we ate for lunch, let alone think about what we’re going to make for dinner. Asking for help is humbling and very hard.
Here’s a list of things people did for us while we were still reeling:
- Scheduled for us to have meals
- Mowed our lawn
- Took our laundry home to wash it and deliver it back clean
- Came over and fed our dog and let her out
- Set up a schedule to pick up our other kids
- Took our other kids out for dinners and fun events to help them cope with the sudden upheaval
- Provided gift cards for gas, groceries, meals at the hospital
- Came to visit, especially when we felt like the world was avoiding us
The number one thing I would want you to know about me is that throughout these past 26 months, the one thing that has been my rock and strength has been my faith. There are blessings and joys to be found in every trial that God lets you experience. I would encourage you to indulge in your tears and ranting. I sure did. But then it’s time to get up and find the purpose in what you’ve been given to do.
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To read more of Anissa's posts, you can visit her blog here.
*IMPORTANT* September is Childhood Cancer Awareness month, and September 13 marks our first time having a nationally recognized day to honor the many kids battling cancer. Childhood cancer is the number one cause of death of children under 20 years of age, more than asthma, diabetes, cystic fibrosis and AIDS combined, yet it gets the least amount of government cancer funding. This is our month to raise our kids up high, honor them for their bravery and courage and to remember the many children lost to cancer every day.
If anyone would be interested in sponsoring the Mayhew family in the Cure Kids Cancer Challenge, they can do so here. All funds raised will go to the Pediatric Cancer Foundation and will be used solely to further research for cures.