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Mama Interview with Brooke, on life with pediatric cancer

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Meet Brooke, Momcologist: On pediatric cancer

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It’s Childhood Cancer Awareness Month, and we wanted to interview a mama whose child has been there and back. To raise awareness, to rally support, and to share their story of strength and beauty. Please hold them and other children battling cancer in your hearts, today and all days.

Who are you/ Describe yourself

Hi, I‘m Brooke, mom to Teagan (10) and Garrett (8), wife to Mike for 13 years.  I love a good cocktail, great food, and living life on our ranch with my family; raising kids, cattle, and a garden, trying my best not to forget to water or feed any of them. 

What is your biggest strength as a mom?

I think one of my biggest strengths as a mom is my ability not to “helicopter mom” too much.  Cuts, scrapes, my 5 year old 30 feet high in a digger pine… not much really phases me.  I approach it all with a don’t sweat the small stuff attitude.  We have two very independent kids who explore the outdoors on their own, are imaginative and creative, think for themselves, and are problem solvers.  We make sure they have plenty of free time to come up with their own fun and try not to over schedule them.  We’ve tried to instill in them the confidence to “do it themselves” and they are secure in the fact they might sometimes fail, and that’s ok, we’re there when they need us, but they are capable of much on their own.

How do you spend time away from your children?

When I’m not with the kids I enjoy quiet drives in the car (no radio, no talking, just sweet, sweet silence), folding laundry while watching TV series I never saw when the kids were in the 0-5 age range and I was too tired to set the DVR, and nights out with my husband and friends for a good cocktail or trying a new restaurant.  If we get wild, we may stay out ‘til 10pm.   

Life before Cancer

I was born and raised in El Dorado county, met my husband senior year of high school, 5 years later we were married (2003) and in 2006 we welcomed our first perfectly healthy child (Teagan), our son, Garrett, came along 21 months later.  Both arrived early (3 & 5 weeks respectively), but were more or less healthy, happy kids. 

In 2013, when Teagan was almost seven, over a period of about 6 months, we watched as our daughter slowly faded away . . .  blood tests and doctor appointments revealing nothing, unable to find any real answers. 

Until the disease we’d eventually identify reached her blood, there was no way to tell it was there.  Two weeks before diagnosis, blood work had come back fine.  Then, she started having nightly leg pains, so intense she woke up in tears and OTC meds couldn’t touch them.  Next the nightly low grade fevers started, and I knew.  We called our pediatrician again, who immediately sent us to the lab.  Teagan was diagnosed with Acute Lymphoblastic Leukemia on 1/9/13.  The leukemia cells had at last spilled from her bone marrow to her blood stream and we had an answer.  I think I knew what it was before it was official.  I had seen it before, and a part of me had been waiting for the doctor to say it for a while. You know it’s not good  news when they call you back to the doctor’s office before you even get home from the blood work, take you into a room to talk separate from the kids.  Finally hearing the words out loud, we sat there in shock.  We were immediately sent down to Sutter Hospital in Sacramento where a bone marrow biopsy and more bloodwork was done to confirm the diagnosis and specific type of Leukemia, and she began treatment that night.   Our family’s life was forever turned upside down, and I was thrown into the new role of “Momcologist.”     

Can you share a bit about the next steps after diagnosis? As far as treatment, precautions, “normal” illnesses, chemo side effects etc.

After diagnosis Teagan started into a two and a half year chemotherapy treatment regimen that consisted of a variety of oral, iv and intrathecal (spinal taps) chemo.  She also was placed on a monthly steroid pulses, and weekly antibiotics to prevent infections which can be particularly life threatening to kids on treatment.  A port-a-cath (central line) was placed in her chest so that the drugs could be given.  She had blood draws and doctors appointments at least every other week, sometimes multiple times a week depending on the phase of treatment she was in.

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Under anesthesia from a spinal tap with chemo after having also just had chemo through her port-a-cath.

She learned how to swallow pills, and each week we would line out her meds in a pill box to be sure nothing was missed.  90 pills in a week were not uncommon, often times more.  Some in the morning, some at night, some with food, some on an empty stomach.   I made a detailed schedule up to keep track of it all.

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We would wake her up at 4:30 am to take chemo so the anti-nausea meds would be effective by the time she had to wake up for school at 6:30.  One of the goals of the chemo is to suppress your immune system so that the chemo can be effective at attacking the cancer cells.  As a result, Teagan was more susceptible and anything from the common cold, to chicken pox which could be life threatening to her should she have caught them. She was taken out of school for six months during the initial and most intense treatment phase so that she wouldn’t be exposed to potential illnesses while her immune system was at it’s weakest.  There were days when her counts (immune function) was so low she couldn’t leave the house as it was too risky, she would require blood transfusions, and we had to live in a bit of a bubble for periods of time.  She experienced all the standard chemo side effects: nausea, vomiting, hair loss (3 separate times), tiredness, bone pain, body aches, etc.  She slept with a waste basket by her bed in case she woke up sick.  Additionally, because (besides the cancer) she was a pretty healthy kid who ate well and kept herself healthy through treatment, her chemo had to be increased as her immune system was too “healthy” and strong.  About a year into treatment they had her at a 150% dose of chemo for her size.  Unfortunately this eventually took it’s toll on her body, and she ended up with pancreatitis and inpatient in the hospital for around 3 weeks, not allowed to eat, and on IV nutrition while she healed.  She was then out of school for another eight weeks. Her body just couldn’t process that much chemo any more.   

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In patient for pancreatitis

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Playdates for cancer kids… IV poles, chemo, and medical supplies for art projects.

After the pancreatitis and a short chemo hold while her body stabilized, she was back on track with treatment, and besides the standard side effects, handled the rest of her treatment well.  She returned to school the fall after she was initially diagnosed, and while there were days where it was hard for her to be there and we’d pick her up early because she was tired, or felt sick, she did well being around her friends and her support network. Isolating her didn’t help her as much as letting her live life like a normal child as much as we could.  She played sports, rode her mule and dirt bike, worked cows, helped at home, played with friends and out of thirty months of treatment, she missed only eight months of school. 

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Smiling through it all.

Teagan’s treatment was considered a relatively event free, as we didn’t spend months at a time in the hospital like many kids do.  For that we feel blessed.  We didn’t want her to feel like the cancer meant she couldn’t do anything.  We took appropriate precautions, educated friends, classmates, and family about the risks, and when treatment rendered her too weak or tired or sick, we took time off.  After 2.5 years, she was finally done with treatment.

How did this experience shape your family? How is it still impacting your family dynamics?  What is follow up like for her? Do you ever have days where you do not think about cancer?

From the moment your child is diagnosed with cancer, your family and your life is immediately altered forever.  Everything you had hoped and dreamed for your child and family becomes a question mark. You are split up from one another for days or weeks at a time while you and your husband take shifts at the hospital, one staying with the sick child, the other at home trying to maintain normal for the other one.  You begin to live life in isolation and in an endless loop of appointments, chemotherapy and caring for a very sick kid. Your whole world shrinks and your focus narrows to saving your child’s life. Family, friends and neighbors are there to help, but in so many ways, you can feel completely alone.  You circle the wagons and pull in tight and when treatment is done you feel like you’ve spent the last 2.5 years holding your breath.  Your family starts to go out more, you become less afraid to leave your kids for more than a night.  As you move further away from treatment, the things that left you paralyzed in fear of a hospital stay or worse, go back to being just normal kid stuff.  You start living life again, always looking over your shoulder a bit, but doing your best to look forward toward a cancer free future.  Checkups go from every other week to once a month, to every two months, to eventually once a year until she is eighteen.  Each month further away from treatment means a little less fear and a little less worry that with each blood draw they might find something.  Hair grows back, energy returns, the pill box gets put away, and life begins a new “normal” reminiscent of what it was before, but never quite the same.

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Teagan, Spring 2016

Garrett, her brother, while not the star player in this cancer game, was a HUGE support to his sister through it all, and felt the sting of being sent to grandmas when sister had yet another appointment or hospital stay, of not understanding why people sent gifts to Teagan and not him, or only having one parent at home while Teagan was inpatient, both kids in tears as they ached for each other and played games on face time because Teagan was stuck in isolation at the hospital. 

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Teagan and Garrett

Hubby and I looked at each other the night she was diagnosed, and having watched other marriages before us fall apart in the face of such difficult situations, we committed that this diagnosis would not break us.  We didn’t know what the outcome would be for Teagan at that point, but we committed to each other that whatever it was, this would not tear us apart.  While it hasn’t always been easy, and we have each grieved and needed comforting in our own ways, our marriage has remained strong, committed, fun, and loving.  We’ve watched other couples with kids diagnosed at exactly the same time follow a different path, and I am forever grateful for the work and prayer we’ve put into our marriage during this journey.  I couldn’t have done it without him.

What were some of your strengths through this experience? What were some of your weaknesses? What helped you stay on your two feet? We took great strength in our faith.   I think having that foundation gave us much hope and courage, and alleviated many of our fears.  Times when we were afraid or didn’t know how to proceed, we turned to prayer, for our own strength and wisdom, as well as the doctors.  I’ve been a believer my whole life and never felt my faith as strong as when Teagan was in treatment, nor the real power of prayer before that time.  It also gave Teagan an outlet for her fears and worries when she didn’t want or know how to talk to us.  While I realize not everyone handles these types of crisis the same way, I truly can’t imagine our family having survived without our faith in Jesus.  We were able to turn it all over to God, he became our strength, and took on our weakness.  Fear, anger, resentment, guilt, all can paralyze you in the face of dealing with a child with cancer.  Having a strong faith got us through much. 

How have you changed? Do you ever reflect on life before cancer and life after cancer?

As cliché as it sounds, I don’t think I take as much for granted as I used to and you really do take joy in the little things.  The first time I could put Teagan’s hair in a ponytail after 3 years of no hair, her making honor roll after missing 8 months of school, her running and not getting tired; they are all little milestones, steps that take us further away from cancer and closer to the future we had always dreamed she would live. It’s hard not to mourn for the lost years, the times you should have been watching your eight year old learn about the wonders of the world, not how to access her port-a-cath or turn off the alarm on the IV pump.  Play dates should have been spent at friends’ houses, not in the play room of a hospital.  But, you can’t look back or hold a grudge.  You can’t spend too much time dwelling on what might have been.  We are grateful to have our child still, many families we’ve met along this journey don’t.

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Fall 2015 family trip to the mountains.

Do you have any websites, blogs, or other groups or networks that you can recommend to anyone with a child with cancer?

When Teagan was first Diagnosed I dove into a 500+ page book on Leukemia.  I searched the web for information, and joined several Facebook support groups other cancer moms had told me about.  They provided a safe, judgement free place to ask questions, voice frustrations, share experiences, etc.  The Momcology group on Facebook has several smaller groups within it that tailor to specific types of cancer etc.  I also started following some more holistic groups that deal with pediatric cancer.  While I don’t believe you can beat cancer without chemo, I think there is a lot of supportive therapies that can be tried that can help you child thrive in the face of all the conventional treatment side effects.  We were blessed to have a supportive, holistic, pediatrician (Dr. Shorrock) through this journey, and are forever grateful to her for pushing hard for answers when we didn’t know what was wrong with our child, and for supporting us and going to bat for us with oncologist and other physicians involved in treatment when we felt like our voices weren’t being heard…  Oncologists can tend to only see cancer, and focus only on getting rid of it.  I believe focusing on the whole child goes a long way to successful treatment, and our pediatrician supported us in this.  Teagan was able to go to school, play sports, have a relatively event free treatment, and be a normal kid much of the time.

There are also many nonprofit groups that focus only on pediatric cancers.  Only roughly 3-4% of federal funding for cancer is spent on pediatric cancers.  Sending your donations to groups that focus specifically on pediatric research will go a long way to finding a cure.  While Teagan has survived treatment, she will not be considered cancer free for five years, and many children do not survive.  Cancer is the number one killer of children under the age of 15.  Two-thirds will have long lasting, chronic conditions as a result of treatment.  I know of several children in El Dorado County alone who have lost their battle with cancer in the time since Teagan was diagnosed, and many more in the greater Sacramento area.  Earlier this month a dear boy in our community was lying in a bed at the hospital as I typed this piece, he was on comfort care, his parents saying their last good-byes; there was nothing at that point that would save their son.  He passed away on September 3rd after a 7 year battle with cancer.  More needs to be done.

September is Childhood Cancer Awareness Month.  If you’d like more information, the following organizations are a few of the ones that support pediatric cancer research, and provide support to families going through cancer treatment with their children. 

https://childrensoncologygroup.org/ – Largest organization devoted to pediatric cancer research.

http://www.stbaldricks.org/ – Funds pediatric cancer research

https://childcancer.org/ – Keaton Raphael -Local Organization providing financial and educational support to families as well as funding pediatric cancer research

http://necannv.wish.org/ – Local Chapter Make A Wish

http://okizu.org/ – Camp located outside Sacramento for families with children who have/had cancer

https://www.facebook.com/groups/momcologyusa/ – main page for the Momcology Facebook support group

www.maxloveproject.org“MaxLove Project is a nonprofit organization helping SuperKids thrive against cancer with fierce foods, integrative medicine & essential research.”

http://www.kickcancermovement.com/ – “KICKcancER is dedicated to helping families affected by childhood cancer THRIVE. Our goal is to empower through education—teaching the importance of real food, real health, and how to implement it into real life—both during and after treatment. We believe: When you know better, you do better. “

Thank you SO MUCH for sharing Teagan’s story of her fight, as well as the helpful links. Our hearts go out to your family, and let’s raise awareness and get donations going to the right organizations.

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