Have you ever had the wind knocked completely out of you? I mean, have you ever taken a solid, direct blow to your gut so hard that you could not physically get air? That’s what it feels like when someone says, “Your daughter has cancer.” And as those words filtered into my brain my eyes fixed on my motionless daughter, innocently unaware in her anesthesia-induced sleep; and for the rest of that conversation, all I heard was “Wah wa wah wa wah wah wah,” like I was in a PEANUTS cartoon.
Grace, the youngest of our four children, was diagnosed with Acute Lymphoblastic Leukemia (ALL for short) just two months after her second birthday. Because leukemia is cancer of the blood, there isn’t a tumor or mass to be removed and there are countless places for cancer cells to hide. As a result, the typical treatment for ALL is long: 2.5 years for girls and 3.5 years for boys. Grace was diagnosed in November 2013 and has about a year and a half left on treatment.
Admittedly, I am a Type-A, control-freak and Grace’s diagnosis made me feel as if I had just been stripped of every ounce of control. I was in complete shock and shifted into survival mode. I didn’t cry, I asked what was next. How were we going to beat this?
Because NOBODY messes with my babies, not even cancer. Think Mama Bear…on steroids. Think Cancer Mom.
I was very aware that everyone around me would feed off my energy and response…including Grace. This was something I could control and I was grasping at any shred of control I could regain. With that in mind, I slapped on my Mom Face, found my positive attitude and made it my job to get my daughter through this.
Since her diagnosis, Grace has been sedated under anesthesia more than 15 times, undergone 2 surgeries, an MRI, 2 Bone Marrow Aspirations, 12 Lumbar Punctures with chemotherapy injected into her spinal fluid surrounding her brain, 47 intravenous doses of chemotherapy, a dozen different types of chemotherapy, many ER visits and 4 inpatient hospital stays…and she still has a year and half left on treatment. Grace is fortunate that radiation therapy has not been necessary based on her test results—many children are not so fortunate.
Chemotherapy wipes out a body’s immune system and ability to fight infection in order to destroy the cancer cells. That weakened immune system is necessary for the chemo to do it’s job, but it makes our kids susceptible to illnesses. Illnesses that are annoying and irritating to most of us can be life threatening to children with cancer when their bodies are unable to fight back. Any fever over 100.4 F is considered a medical emergency and requires a trip to the ER. Before I was a Cancer Mom I didn’t even really consider that a fever. This susceptibility to illness is isolating. Our children cannot be around people that are sick with even the common cold; so we struggle with trying to strike a balance between letting our kids be kids (so much of their childhood and innocence is already taken away) and protecting them to keep them alive.
As Moms, we protect our children. We do our best to keep them safe and when something is wrong, we fix it. We make it better. That’s our job. I can’t make this better. Instead, I have to stand by and watch as my baby is poked, prodded, poisoned and robbed of her childhood. I have seen steroids transform my joyful, smiling toddler into an unrecognizable tantrum-throwing monster unable to smile. I’ve had to physically restrain my daughter as she is sedated for yet another procedure. I watch nurses suit up in gloves, masks and protective gowns to handle the chemo they pump into my baby’s body. I’ve spent nights awake holding my baby as she vomits from the chemo that is “making her better”. I have come to understand that her excellent prognosis with a 90% survival rate is based on her surviving 5 years from the date of her diagnosis. I now understand that survival is a tricky word that doesn’t factor in quality of life—her chances of developing a secondary cancer are dramatically increased and the long-term effects of chemo are overwhelming. I’ve had to explain all of this to her siblings, that are just babies themselves, and look them in the eye as they’ve asked, “Is Grace going to die?” I’ve had to keep our six pack functioning with some semblance of normalcy when this life feels anything but normal.
Cancer has changed our lives forever, but it’s not all bad.
I’ve learned to take one day at a time and find gratitude for the small blessings. We are blessed with an amazingly strong support network of family and friends. I am grateful that I trusted my maternal instinct that was telling me something was wrong. Grace’s cancer is treatable and she is doing very well. We are fortunate to live within 10 minutes of an excellent Children’s Hospital. I am more appreciative of our health. I have become more spontaneous (and dare I say less controlling) after being reminded that the only time we are guaranteed is right now. My priorities are better aligned, because I’ve realized that some things really just don’t matter.
I’ve learned that kids can’t fight this battle alone. In honor of September being Childhood Cancer Awareness Month (don’t worry, before I was a Cancer Mom, I didn’t know that either), please consider doing one of the following things to help:
- Donate whole blood, platelets, blood products. Our kids need a lot of transfusions to keep them alive.
- Donate art supplies, new toys, itunes gift cards, gift certificates for local quick serve restaurants, books, bright pillow cases, etc to Vermont Children’s Hospital.
- Know someone in treatment? Mow a lawn, provide a meal, do some laundry, offer to take care of a sibling, reach out. Make a phone call, send an email, drop a text. They are isolated and it hurts.
- Make a donation to www.stbaldricks.org , www.curesearch.org or www.alexslemonade.org to help fund pediatric cancer research.
Written By: Karen Robinson
Karen Robinson grew up in Vermont and has been married to Amos, her high school sweetheart for 15 years. As newlyweds they ventured to Boston for several years, but returned to Vermont to raise their family in Williston. Karen is a stay at home mom to their four children: Maggie (6), Beatrice (4), Max (4) and Grace (3). She is passionate about education, raising kind and respectful children and raising awareness for Childhood Cancer.
Thank you for this article. I can’t imaging how difficult this journey is. One of my best friends also walked this path, and I wish I’d read this article at the beginning of her journey. I appreciate the information on how to help. I pray for peace and health for your family…
I will be giving blood on Monday and will be thinking of Grace and your family. Continued prayers. God Bless.
What Karen doesn’t tell you in her posting is that she and Amos have not only taken on this battle head on for Grace and the entire Robinson family but they have put the weight of other cancer parents on their shoulders. Our four year old son was diagnosed with T-Cell ALL in July and both Karen and Amos have been there for us as that much needed safety net, supporting us in our time of need. The survival mode that she talks of — “what was next and how are we going to we beat this…” is really a choice that she made early on which demonstrates her resolve when faced with the unfathomable. Karen, when you talk of the “amazingly strong support network of family and friends”, I hope you look in the mirror and realize that YOU and Amos are part of the “AMAZING” group for another family fighting the pediatric cancer battle. We pray for your continued strength and Grace’s continued healing!
Thank you, Brian. We are fortunate to be surrounded by family and friends so ready and willing to support us. What I didn’t mention above is that our circle of friends and community expanded and multiplied at and incredible rate–we are members of the club no one asked to be a part of, but it is a fiercely loyal and supportive club. My friends now include other Cancer Moms and a whole team of pediatric oncology doctors and nurses (who are AMAZING, by the way). Because the single thing I’ve found most helpful on this journey is to connect with people that ‘get it’, people I can talk and vent to without having to explain myself or define every other word that comes out of my mouth. Unfortunately, no matter how earnestly others want to understand, they just can’t unless they’ve lived alongside a child with cancer. So now we try to give back and pay it forward to others that are just at the trailhead of this journey. We continue to hope and pray for Andrew and your family.
Thanks goodness you have Jenn the Hen and other Child Life specialists to help you with your hardship. (I know them from my daughter’s 13 year journey with ALL). When you have the chance, visit the Emily M. Lyman Foundation website and let me know if we can be of any help – Jenn will know 🙂
Stay positive and always look to the silver lining.
Child Life is AMAZING. Absolutely Amazing. I had no idea their group even existed prior to Grace’s diagnosis and I cannot say enough about the child life staff. When Grace was diagnosed, they knew what our family needed before we did. I checked out your daughter’s foundation–what a talented and beautiful girl. I am deeply sorry for your loss. I would welcome the opportunity to connect with you sometime and learn more about your foundation and the work you are doing. Much love to you and your family.
I pray that with God’s grace and love your little one will be healed and live a life of love and happiness. I can’t begin to imagine going through this, and feeling so helpless to make your baby feel better. I pray that God gives you strength to continue supporting her and being there for your family too. Don’t forget to take care of yourself too, she needs you strong and healthy. Reach out when you need too. Take a moment for yourself. God bless and I wish the best for your family.
You have great strength and courage. It is good to journal your thoughts. You will one day be able to share the written journey with that beautiful child Grace. And it will be Grace that will carry you and the family through this. The Grace of Our Heavenly Father. I was referred to your blog by way of Ann Pratico, my sister in law. Blessings and prayers coming your way from Washington State.
I do believe journaling is important and I wish I had been faithful about it throughout this journey. Thankfully, Grace is young enough that I don’t think she will remember all that she has been through, but I want her to know. My hope is that knowing what she has already overcome will give her strength and determination to tackle whatever obstacles lie ahead. Thank you for reading!
Karen, what an amazing, strong, and fantastic family you have! I sat next to you at the Dine and Discuss event and you said you have four kiddos, but you didn’t say anything about this. I am amazed by your strength. Thank you for sharing your story; you and your family are in my thoughts.
Thank you, Mattie!
I too was inducted into the cancer mom club when my youngest if 3 was diagnosed at 16 months old.. It is truely every parents worst nightmare. Priorities shift, and new persective is gained.
My daughter is now 15 years old, active in sports, healthy and aside from being a normal moody teen she is happy. We have residual effects, slow processing, short term memory issues, reading difficulties and comprehension issues, academically. All absolutely taken with a grain of salt after where we have been, for the parents. The ripple effect on all of our children is something we grapple with, and often wonder if these behaviors/ resentments (yes resentments) are normal teen things or not? Everyday in the mist of daily confusion, we feel lucky. It is heartbreaking to be a cancer mom, it pulls on every inch of who you are. It is something that will never ever leave you, but it can go on a back burner now, which is a breath of fresh air. You will make it through, as will your girly. Love and fortitude to you and your family. Cathy
Yes, the elite club (that isn’t so elite) that none of us ever wanted to join…I’m sorry you’re a member too. Honestly, it’s the ‘after’ that is daunting to me. I can get through the current day to day because my daughter is responding well and I’m confident she’ll pass this next hurdle…it’s the unknown of her future that terrifies me. One day at a time, that’s all I can do for now. I’ll rely on the moms, like you, that have walked this path before me to guide me toward the next right step. Blessings to you, your daughter and the rest of your family.
What an amazingly strong and loving Mom. This women I hardly know has been faced with the ultimate curve ball of life and yet she still smiles, is friendly and gives 110% to her children, family and community. I am in awe of her strength and resilience. We can all grow from her glass half full attitude and be better partners, parents and friends. Perhaps we stop to smell the roses more often… Grace is so lucky to have such a devoted Mom and advocate for her wellness. I feel privileged just knowing Karen and her beautiful,happy and playful family.
Thank you, your kind words are much appreciated. I can’t say enough about the difference it makes when you can surround yourself with a supportive, caring and empathetic community. I wouldn’t be her without it…truth.
Grace is a warrior, and you, my friend, you are a Goddess of strength and wisdom.
And I have an army of supportive friends and family that help to carry the load 🙂
Karen, Amos and family and extended family. You are all awesome. You are amazing. I could go on. You are all doing an amazing job. Our thoughts and prayers continue to be with you.
Thank you for the love and support!
As a strong supporter of a friend who’s kid is battling neuroblastoma, I’ve followed journeys such as yours. Strong, powerful stories! Thanks for sharing, it is a reminder of struggles in our own backyards. Keeping you in our thoughts and prayers!
Thank you for the prayers–we’ll take all we can get! Kudos to you for supporting your friend; I can tell you those are the things that matter most.
I just wanted to send my prayers to you as I have a great niece at 2 months old just diagnosed with cancer. Your a strong mom for doing this blog , taking care of 4 kids and the treatments. Much respect to you and your family. Positivity and a good attitude helped me survive my cancer this year. I chose to keep mine quiet as I didn’t want people to know I was sick. I have always chosen to be the strong one ….I pray for your daughter that she remain strong and a true fighter. Kids are amazing in the roughest of times that they can still muster up a smile.Bless you all.
Thank you for your prayers. Kids are unbelievably resilient–thank goodness for that, and a positive attitude can work wonders. Much love and prayers for strength and healing to you and your great niece.
Karen, you truly are an amazing Mom!! Grew up with good values and continue to raise your kids with good values. You have our support in anything we can do to help. Hugs <3
Thank you, Jean!
God’s Blessings to my wonderful family! We are on this journey together…
We sure are–we wouldn’t be where we are without your love and unending support! So grateful to call you my Mom xoxo