What I'd Like For You To Know: The Mom Of a Child With Cancer

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.

: : : : : : : : : :

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.

Comments

[[email protected] Twenty Cents Keeps Moving]

Wow, thank you for sharing that. I am so touched that you would share your story here.

Praying for you and your family,
Leslie

[Lisa @ Stop and Smell the Chocolates]

Thank you so much for sharing - I'm sure it's hard to do, but it's so helpful for us to know a little of what you went through to know better how to help others.

So glad that the cancer is gone right now and pray that it won't return.

[Lorie]

Thank you!

[JanMary, N Ireland]

Moving and passionate. Close friends have been through it, and this is a great practical list.

Hoping none of us will need it, but thanks for sharing it.

Hugs and prayers.

[kelli]

Thank you for taking the plunge and accepting Shannon's request. I know, really know, how hard it is to put these things into words.

We will be lifting you up in prayer. You, and your entire family. That God will carry you in His Grace every moment, even when you can't feel Him or you're too tired or beaten down to reach out.

That in those times, He will squeeze your heart in remembrance and love. And you will take the next breath. And the next one.

And that the fun times, the good times, will be indelible memory markers for each one of you.

And that your children will grow strong in His love through this. And your marriage will thrive despite the stress.

But again- thank you for letting us share with you.

[Lynnebee]

Thank you so much for sharing. And thank you to Shannon for giving us a small glimpse into the hearts of others. Praying for all of you that share the common bond of joy and sorrow.

[Corey]

I work with families of kids with cancer. I am forever blown away by their strength. Thank you for a beautiful post.

[Carlyn Canady]

As a cancer survivor with an almost 4 year old (tomorrow!), I know the fears in reverse of not being able to raise a child due to cancer. I was diagnosed with Hodgkin's Disease when my baby girl was 6 weeks old. I did the chemo, lose the hair, puking every day, needles, exams, blah blah blah thing for 6 months. November 1 will be 4 years since my diagnosis. Yes, there will be a party that day!

I remember the Friday when my doctor called me. I went through many tissues, anger, crying, more anger, more tears, and even more anger over the next few weeks. My story is on my blog entitled "God's Unexpected Plans".

Cancer is one of those things that changes a person, an entire family, sometimes for the better, sometimes not. I thank God every day that Makayla was too young to remember all of that. I also thank God in advance for keeping her cancer-free and healthy every day of her life.

Shannon ... thank you for allowing other women to tell their stories through your blog!

Anissa ... thank you for sharing your story! It's difficult to share a story that is so close to you, and reveals so much pain. Celebrate the small victories as if they were ginormous. Blow the big victories out of the park! Keep talking with all three of your children. Focus all of your hearts on God's power and love.

Focusing on God's power got me through cancer. Focusing on God's love gets me through every day now.

[Krista]

Shannon, thank you for this series of guest posters. It's been great.

[stonefox]

Thank you for sharing your story. Thank you for the grace that shines through your words. Love and prayers to your family.

[Kathy C.]

Thank you for taking the time to share a bit of your life with us. It always helps to know first hand how to be a friend in a situation like yours. My prayers go up for your family.

[T.]

This series is the best thing I've seen in a long time. Thank you.

I'll be heading to Peyton's fundraising page now. With all of your readers I know we can take a big bite out of her goal!

[Elizabeth]

Thank you for sharing that. I can imagine that it is hard but it does help me understand what I can do to help.
Our prayers are with your family and I am thankful to God that the cancer is gone and that you all have time to heal together!!

[Chatty Kelly]

Chatty Kelly is speechless, tearful. So I will follow your advice, and offer prayers and a hug.

{{{{{{HUG}}}}}}

[Andrea Braun]

Chili's Restaurant is a corporate sponsor of St. Jude Children's Research Hospital and on Sept. 29 they will donate 100% of their profits to St. Jude's. So go eat at Chili's that day-it's an easy way to help fight childhood cancer!

[Gabreial]

"But then it’s time to get up and find the purpose in what you’ve been given to do."

God's grace is so good, so merciful and so wonderful. It's the lesson shared that not giving up on your faith and what you believe in your heart to believe, that will touch the lives of others. Your daughter went through these horrible things, but if others are faced with it and they've read your story, they'll see how good God is. This is a blessing for all of us to hear, to read and to tug our hearts in the direction of faith and believeing. Thank you for sharing and for reminding me to thank God once again for our health and well being. I'll have faith and believe that this trial is over in your life and that the story of such a horrible disease is the only thing you have left to speak of it.
God Bless your family,

[emily]

I am deeply moved by your story. Thank you for sharing it and for clinging to your God in the midst of a broken heart.

[Rachel]

Brought me to tears - thanks for sharing, especially the list at the end. It's nice to know what you need & want but probably couldn't think of at the time.

[Jane Anne Owen]

Thank you for sharing your heart. You touched me. I know that I am wiser after hearing what you had to say. Thank you. I just said a prayer for you, your family, and for Peyton.

[lizzykristine @ Uplifted Eyes]

Thanks for sharing, Anissa. And thanks once again for hosting this brilliant series, Shannon.

The suggestion list of how to help was GREAT and easily applies to many people other than cancer situations. Thanks!

[Sarah at themommylogues]

Shannon, this is the best series. These are issues I wouldn't necessarily seek out info on, but I need to know.

Thank you Anissa for that! It's so good to hear what would be helpful. I pray a shower of blessing on you, Peyton and your family.

[Michelle Johnson]

Heartbreaking and uplifting. Thank you.

[Amanda]

Thank you for sharing your story. It hit me especially hard because I have a little girl named Peyton as well, and I couldn't imagine her going through that.

[Nicole]

This is so touching.

I just have to share that this summer I went through a month and a half of taking care of my grandma who was unexpectedly diagnosed with cancer, and died less than a month later. I was at the hospital all day every day.

People kept saying "Let me know how I can help," and I wanted to scream, "I DON"T KNOW WHAT I NEED. PLEASE JUST BRING A MEAL OR DO SOMETHING YOU CAN THINK OF! I CANNOT THINK!" The whole situation has drastically altered the way I am going to respond when others are in a similar situation.

Instead of asking, "Can I bring you a meal?" I'm going to say, "I'm bringing you a meal tonight."

Okay super long comment, sorry but thanks for letting me get that out!

[Joni]

Thank you for sharing. I love your "what I want you to know points." I think they are applicable to anyone going through grief and turmoil in their lives. Very practical, thank you for sharing. This will stick in my mind for a long time.

[Runningamuck]

I take so much for granted... from the health of my children to my relationship with Christ.

Thank you so much for my wake up call and the helpful tips on how to help others in your situation or similiar ones.

[Kris @ Weird, Unsocialized Homeschoolers]

Thank you for sharing your story. We have a friend whose son is now cancer-free after battling a brain tumor. These tips would have helped me to be a better friend to his family, but, can I honestly say that I hope I never again have an opportunity to put these tips to use?

One common thread that I've heard through many of the posts in this series is don't ask what you can do to help; just do it. That's going to be my mantra from here on out whenever anyone I know is going through a difficult season in life.

I'm praying for your family.

[edj]

That wasn't long at all! I was hanging on every word. Thanks so much for sharing this. I'll be praying for Peyton and for you all, for total and complete health.

[Kristin Maynes]

You're right....I needed the tissues. I can't put into words what I feel. This is such an amazing story.

Thanks you for sharing.

[Tracey]

Wow...amazing story. I am so glad to hear the your little girl is okay. We will pray for your family.
May you find continued strength in God.
Blesssings.

[Vanessa]

Wow. Honestly, I have goose bumps and tears running down my cheeks. Our family recently went through this battle. I lost my nephew back in June to cancer. My family as a whole knows how it can affect your family when battling it. Your family will constantly have my prayers and best wishes. I have children of my own and after watching what my sister went through, my worst fear is loosing them. I can only imagine the fear your family had.

[Jenni Wilson]

Thank you so much, Anissa, for sharing this with us. I will definitely take your words to heart and try to put your advice into practice. It's amazing how common-sense your suggestions seem when reading them, but I admit I would not have thought of several on my own.

Blessings to your family, and may healing continue to flow to Peyton!

[Queen B]

Thank you for sharing your story with us. My mind cannot wrap around all that you and your family have endured, but I am so thankful for a God who has held you and given you strength. I will be praying for you all.

[Aunt LoLo]

Thank you for sharing. Thank you for your profound and OUT THERE IN THE OPEN faith - the world needs more of that.

Thank you for the advice - it stands true for any friend who is trying to help any other friend, whether it be with death, illness, new baby, new home, bad mortgage deal...your wisdom is wonderful.

[tracey]

Anissa, that was beautifully written. Tore me up inside, and made me weep... So thankful for you that Peyton is beating this. May her life be blessed and beautiful...

[Lara]

WOW! What an incredible story and woman. Praise God that she has not lost her faith...and I will be praying for a full recovery AND a childhood that CAN still be had!!! THANK YOU for sharing! (((hugs)))

[Angie]

I wept. Thank you for sharing your story and your heart.

[EmmyJMommy]

Thank you so much for sharing your heart! Shannon, thank you for beginning this series!

[Marla Taviano]

Thank you, Anissa. Bless you for sharing your heart in such a gut-honest way. I have 3 kids too, and my youngest is a 2-year-old girl. I kept thinking of my Nina the whole time I was reading about your sweet Peyton. Makes me long for heaven.

And I went to your site just now. Oh my word, Peyton is stunning. And I loved your post today. And I love the way you write. And your humor.

I bookmarked your blog, and I'll be praying for Peyton.

[Faye]

Wow, this was informative and very, very helpful.I will print off that list as a great reminder on how to be the most effective support. I wish I would have known all this before as well. We lost our youngest son at the age of 25 and this would have been helpful to send to family and friends so they knew what to do.
Thanks from the bottom of my heart, for making yourself vulnerable to help us.

[Michelle- This One's for the Girls]

Wow. What an amazing post. Thank-you.

[Queen of the Click]

Wow you've had a hard 26 months. I'm glad you are coming out of the storm and your daughter is doing well. I'll be praying that your daughter stays cancer free.

[Patrice]

Wow...thanks for sharing that great advice and your story!

[Tara]

I know I'm a bit late to the party here, but I just wanted to tell Anissa that was one of the most beautifully worded and touching things I have read in a very long time.
I am sat at work (in England) reading this and I will go home and hug my two children and appreciate them just that little bit more and if that is the legacy that her words will have, then she has done 'everyday' mums a great service too.
I wish you and your family the very very best for the future. X

[angela =^)]

Thank you for sharing your heart. It's hard to effectively put it into words, and you did well. My son was diagnosed with diabetes in May, and I've gone through so many emotions since then. People ask how we're doing, what we're doing, what we'll be doing and my instinct is to smile and say "fine." Sharing a heart is hard. Thank you for doing it anyway.

[Molly]

This is such a wonderful post, Anissa. You have spoken so clearly and truthfully.

I have to "AMEN!" the crap-meter concept, especially. I can totally relate. And to a lot of the other things you said too, although our situations have been different.

Thanks for writing this post. I praise God that Peyton is cancer-free and plead with Him, along with you, that she remain so.

[Jennifer]

Tears are streaming down my face right now. You are living daily with what my worst nightmares are made of. As a member of a family that has been plagued by cancer since I was 7, I pray daily that God would spare my children from this monster. Begging Him and bargaining so that I will never realize that pain and terror. God.... Bless....You and your family! Praise God that he has brought your little one, you, your husband, and your other children through this. I am posting a link to your story on my blog to share.

[TRS]

Thank you for that beautiful post.

Especially the reminders of how to help / what to say/not say.

My brother and our cousin both had baby girls just months apart - our cousin's baby required surgery for her hip bones that formed outside of the hip sockets. She was in casts for the first 2 years of her life - and had to learn to crawl and walk much later.
But when they were both infants, as we went to visit them in the hospital... my brother felt guilty bring his healthy kids along.
That it would be rubbing his healthy kids in their face. I knew he was wrong... of course they don't wish that other kids have the same problems. You put it into words well.
Avoidance would be much worse to deal with than seeing a happy healthy family who loves and cares for you!

[Ashleigh (Heart and Home)]

This is every mother's deepest fear realized--definitely caught my breath reading your story. I'm lifting you, Peyton and your family up before our Father.

Your suggestions for what people can do during these kinds of times are spot on, especially the "I don't even know WHAT I need!"

[Julie Stiles Mills]

An absolutely wonderful resource for those supporting a family in crisis is www.lotsahelpinghands.com

I wrote a post describing how it works, entitled "lotsahelpinghands." The post is found under my "ehow" category.

The BEST feature: a master calendar which is available only to friends and family members (to protect privacy). Meals and all other needs are in one place so everyone who is providing assistance can see exactly what is needed and when.

I've been using it for more than six months as a friend battles (and so far - is winning!) stage 4 breast cancer. I can't recommend it enough.

And it's FREE.

[Linda Irwin]

Thank you. That was beautiful. As a mother of a son with A.L.L. Leukemia, I could relate to this post sooo well. The fever, the dr. calling my house, the rush to the hospital, the world spinning out of control, not knowing what we need or want. Just living day by day, one step at a time. This was an awesome post and I often think of my own lists of what I wish people knew about my child with cancer.

My extra things include -

1. my child is on steroids, no his meltdowns do not mean I am a bad parent and the fact that he is eating double what my husband eats at age three, also does not mean I am a bad parent. Half of the month he will eat like this and the other half I struggle to get him to eat one single bite per meal. If my dr. is ok with it, please do not judge. His weight is the LAST thing we are concerned about at this time. We will worry about that after his body is healed.

2. If my crazy 3 year old boy has bruises in the strange places and quite a few of them, please do not look at me like I abuse my child and just assume it without even meeting me. My daughter can do the SAME things or worse and come out clean but my sons blood is different. And we already feel bad enough in life not to be put to the third degree over bruises on a typical boy. If you observe him as a happy loved child, please leave your comments to yourself.

3. If I ask you things like, if your kids are sick or anyone has colds, before we let you play with us, or if your swimming pool is well maintained and clean, we are NOT snobs. We are just completely concerned about the weak immune systems of our child and have to do everything we can to protect them from unseen dangers. It is nothing against you but only for the love and health of our precious child.

- those said, your comment about being the measuring stick of crap had me laughing out loud! Thank you :)

[Megan]

I have recently had a friend whose 2 year old daughter was diagnosed with A.L.L. Your words remind me of the kind of friend she needs during this time. Thank you so much for sharing, and I can't wait to direct her to this post....It sounds like all the things she seems to be feeling!

I'll be praying for Peyton's continued remission and for a happy, healthy life!

[Beth at I Should Be Folding Laundry]

Anissa, you know I absolutely love you, I think you are such an amazing mother, writer and friend. Your story not only touches my heart but so many others and makes us better human beings because you SHARE you story with so many. Thank you for sharing Peyton's story with all of us, Peyton and her beautiful family will always remain in my heart.

Shannon, thank you.

[:: Suzanne ::]

Great post. Thank you for sharing. I'm going to link it up to my "how to help a family in a medical crisis post".

Best,

Suzanne

[patois]

I believe that God knew whom to send Peyton to: you and yours. God bless you. And thanks for sharing this.

[Heidi]

Thank you for spelling all that out, especially the part about not wanting to be everyone else's crap-meter. I have always felt guilty about expressing dissatisfaction with any aspect of my life to someone who is going through this kind of stuff, because it just seems so small by comparison, but apparently it's worse to make the comparison. And if I happen to have more mundane difficulties at the time, it feels false to pretend everything is wine and roses, even though none of my difficulties are potentially lethal.

[Jennifer]

"It’s not fun to be the crap-meter by which everyone else measures the misery in their lives." SO WELL PUT.

Since my son has been diagnosed with cancer, I find that I know NOTHING about my friends or family. We always talk about me. I too long for the associations I had before. I still need their listening ears, but sometimes I want to talk about something besides cancer.

Also, I 2nd the advice about helping. Please just find something that you can do and do it. It's so hard to know what we need and when. When we do know, we'll try to ask.

Sweet wishes to Peyton and family. Thank you for sharing your experiences with us.