Our daughter, Hannah, is 17. She’s an artist, a skier, a runner, she rides bikes in the mountains. She is a friend and she is also blind from a brain tumor.
I can’t even explain what I feel after watching her dig in to fight to live. You hear about cancer, you know people with cancer, you pray for them, you donate, you make a meal, and you shave your head…but to have cancer happen to YOUR family, your child… it’s dreamlike… & when I say dreamlike, I really mean that it’s your worst nightmare ever…and you don’t get a chance to wake up. Ever.
Let me tell you about my Hannah. Parenting Hannah was as entertaining as it was frustrating. It was hard to keep a straight face when she’s SO adorable and being SO naughty. But I loved it, Hannah had a way of doing things ‘her way’…all the time. ‘Put your toys away’ was interpreted into 20 stuffed animals lined up neatly against the wall instead of IN the toy box. She had the confidence to look in my eyes and wait me out to see how far she could put that big, fat, hairy toe across the line and still get away with…whatever. Was she headstrong? Yes. Was she persistent? Definitely! I don’t have enough fingers to count how many times I left the store carrying my toddler octopus. When she was 5 or 6 years old, I even signed up for a parenting class for ‘the strong willed child”. I said more than a few times, ‘God MUST have her in training because I can’t ‘break’ her. Please know that I never meant to ‘break’ her spirit. I never wanted to change who she was meant to be, I just wanted a little girl with manners, who listened to directions and said, ‘yes, mama.’ She wasn’t a handful. I won’t say that. She was determined. Looking back…it’s a little creepy to realize He WAS training her. and Im glad I didn’t break her. My heart believes that she pushed back on cancer and won BECAUSE she was strong willed & fought.
As Hannah grew up, she had a smile for everyone and a giggle that warmed you inside. She was never afraid to make a new friend, often the first to approach the new kid. She loved being outside, in the sun or snow. She was a gymnast, a competitive swimmer. She skied, danced, ran track, played basketball, learned to snowboarded and was in the school play. At 11yo, she was a natural at volleyball, having spent a good amount of time at her sisters’ tournaments, waiting for her turn…, if you’ll let me brag on her for just a min… she had a MAAAD overhand serve for an 11yo.
Let me cut to the good stuff, as I write this,Hannah is 4y out of treatment. She had surgeries, radiation, chemotherapy, along with all the tests, pokes, transfusions, isolation and ambulance rides to Children’s Hospital in Denver. She has been cancer free since February 20, 2015.
In January 2014, Hannah was having headaches. Sometimes medicine worked, sometimes it didn’t. In the coming months, she had multiple appointments with our pediatrician, optometrist, her eyes were checked, & rechecked. New glasses, & massages and an expensive new pillow. I logged all foods and her water, kept a tight schedule so she was rested, and watched the weather to see if that affected her headaches.
Our lives were busy and our girls’ activities kept our schedules filled. Sometimes Tim & I had to divide and conquer. Hannah never stopped, never once said she didn’t feel like practice. She never gave a fuss about being drug to Abby’s activites. Her headaches didn’t stop her, as they weren’t anything more than ‘a headache’. Migraines run in the family. She was prescribed medicine and she kept going.
I shared my concerns about her headaches with a few close friends. Try this… Try that… She’s a teenage girl… Her body is changing…No one shared the level of my concern. No one heard Hannah ask for Tylenol before her race. No one heard her ask if it was ok for her to close her eyes on the way to practice. She was just a prepubescent teenage girl with headaches. No one could have guessed…
Mid-March…Opening night of the MS play. Hannah’s theatrical debut & she was going to be the spunkiest pink pig at Alice’s Mad Hatter tea party. But she got a headache and it got worse as it got closer to curtain call. I was literally watching her change by the second. She had stopped moving, she couldn’t/wouldn’t lift her head, she was mumbling, but not making any sense…SOMETHING was seriously wrong. Seriously wrong. I left the play and took her to Urgent Care. On the way she got sick, projectile sick. Everywhere. As soon as she was empty, she was peppy, alert, talkative and NOT, NOT, NOT…. the kid from moments ago. It was night and day difference…sun and moon… black and white. She was as opposite as opposite could be. I was the only one who saw what I saw…and because she was acting SO ’normal’ afterwards, I wondered if I imagined it what i saw at the play? Aaaaaand then she asked for Chicken Nuggets. At urgent care, they found nothing, ‘check in with your pediatrician in the morning.’
I have never been the mom to take my kids to the dr for every sniffle, cough or owie. I took them for well checks and sports physicals and an occasional strep test or a fever. My kids were great eaters, loved veggies, and were active. I can confidently say we didn’t see their pediatrician much. HOWEVER, I was very much looking forward to telling him about Hannah and her behavior before I took her to the Urgent Care and how scary it was before she threw up. Something was wrong and I needed
He gave her a once over and she breezed through everything he threw at her…finger to nose, follow the light, equal feeling on left and right, strength test squeeze, reflexes… all perfect. But she couldn’t walk a straight line on the floor. She couldn’t keep her balance when she walked with one foot in front in front of the other. She wobbled, and fell off the tape line. And then I couldn’t breathe…Unfortunately, I panicked and said “I am just now realizing that I haven’t told you that my mom passed away from a brain tumor.” The silence was painful. I regretted it as I was saying it because I said it in front of Hannah. I can’t explain how or why that came to me at that moment…then he said that she ‘doesn’t present like a brain tumor patient’. Lets do some blood work.”
Let me explain…My Mom fought brain cancer for 11months and passed away in October 2012 from an astrocytoma-glioma. Until it fell out of my mouth, a brain tumor had never crossed my mind. But he said it was a ‘no’. He said she didn’t present like a BT patient. but it was out there now.
Later, after she was diagnosed, I learned that pediatric brain tumor patients are often nauseous in the am, they forcefully vomit and feel better almost instantly because the pressure in their head has been released with the vomiting. Hannah was often nauseous in the months leading up to her diagnosis, but she had not thrown up thrown up until the night of the play. She did tell us that she got headaches during the day at school, they happened at lunch and during PE usually and she said they made her nauseous, but she never vomited. She told us that she would get a flash of light and then a headache. So brain tumor symptoms didn’t match up, but migraines did.
The end of her 6th grade year, Hannah was falling behind in school. Homework wasn’t being turned in, papers being lost, sleeping during class. she wasn’t taking notes, she wasn’t participating, constant grumpiness. We chalked it up to Hannah being Hannah, doing things her way, still adjusting to MS, not liking rules and responsibility, basically, the toddler Hannah had turned preteen. She and I spent extra time before school, after school, taking tests, making up assignments…we were in ‘survival mode’ GOD HELP US, JUST FINISH 6TH GRADE!
in the last couple weeks of 6th grade, they had a class retreat but she wasn’t excited about, but we sent her anyway. The first night we got a call from her teacher. She was laying on the bathroom floor with a headache. (flashback to Nov. 2013). We talked her through it, she fell asleep and was fine the rest of the retreat. We chalked it up to the altitude and homesickness.
I knew I had been pretty tough on Hannah, especially that last semester, so we needed summer and pool and sun and fun to get back on track as Mom & daughter. I missed my sweet, funny girl… and I still miss that little girl, so freaking innocent… She days away from a life changing diagnosis.
So the next two weeks happen fast, and it started on the Sunday after the class retreat.
Sunday morning, Hannah woke me up early, said she wasn’t feeling great, and wanted a hot steamy shower. Sitting in a hot steamy shower has always been something that my girls do when they don’t feel well. Lately she had been taking a few more than usual, but I just left it up to being tired, school was out and she was resting up. I put her in the bath, pulled the curtain closed, plugged the drain and ran the warm/hot water. I sat on the floor and I just listened to her talk. It was really nice to feel like we were getting back on track in those moment. Then she giggled and told me that her body felt weird. She kept giggling and said her toes were numb, then said the tingling was moving up her calves, and then her fingers…I pulled back her shower curtain and I grabbed her and she was STIFF. I couldn’t bend her fingers or her wrist, I felt that if i tried too hard I would break a bone. Her elbow went stiff while I was holding her…the numbness went to her neck and her whole body was stiff… I couldn’t get her out of the water. I rolled her out and screamed to my husband. By the time he got there she was in my lap and going limp, as in back to normal. She said she was tired and wanted to go back to bed. I realized that AGAIN, it was just Hannah and I. Scared for what just happened, I called her pediatrician office and the on call dr said it was a migraine treat with medicine we have at home.
The following week, there was a volleyball camp.Hannah has been to this camp since she was 9, she was always in the top skills group. Hannah wasn’t in the top group this year… That sat weird with me…
the next week, she went to a camp where her big sister, Abby was assisting. Abby came home to say that Hannah was goofing around all day, needed to focus and choose a better buddy in drills. She also went to a movie with a friend… “Fault in Our Stars” and came home from the movie with a headache. 🙁 Terrible timing to let her go see that movie… or was it?)
Saturday, she had a grass tournament in the mountains with her best friend. She woke up with a headache (altitude?) and as she got dressed in her spandex, I had a brief passing thought in my mind,’her spandex are LOOSE’ & her cute little bum wasn’t filling out her shorts. hmmmm….
This was the day that I really started to panic. She didn’t play like the Hannah we knew. Something was definitely not ok. And today was the day her Dad started to see what I had been seeing over the past few months. She was physically struggling and uncoordinated, slow, couldn’t pass, lost her balance and fell AND she wanted to sleep/rest between matches. VERY unlike Hannah. Coincidentally, her pediatricians office called during the tournament to let us know her bloodwork came back… she was on the tail end of Mono.
Monday I talked with pediatrician to tell him about the weekend and we changed her migraine medicine.
June 17, 2014, A Tuesday night we ate dinner out.. She slept at the table and couldn’t walk to the car…physically, she couldn’t walk. She couldn’t move her legs right and so Tim carried her to the car and into bed. My hubby has such a calm demeanor, not much riles him up. No drama, He doesn’t get worked up…. I was freaking out. He said she was just tired.
That night i didn’t sleep. This time, I KNOW what I saw. I saw my baby, for no reason that I could see, unable to hold up her head. SHE WAS NOT OK. And my heart knew it. I had been sleeping on her bedroom floor for a longtime…months. That night I laid awake and watched her. I just prayed…
June 18, 2014, I called again and I talked through my tears, I cried and told Dr. I was afraid for her. I was afraid that she was really really sick. I said Im with her everyday and she is getting worse. She isn’t the daughter I had last week, or a month ago….
I was heard. He agreed an MRI was the next step. The MRI was scheduled for that afternoon. Didn’tknow it at the time, but a same day MRI was a complete God thing. We were close a ‘different story.’ During the day, waiting for the MRI, I shared with a few people close to us to ask for prayers, we were taking her for an MRI. Some thought it was “unnecessary”, “a little dramatic”, “I was going overboard”, Maybe she has an ear infection, I should ask for an antibiotic”. I almost let people talk me into cancelling the MRI. I didn’t.
I didn’t know what was ahead of us, but I wanted her to have a good day. So we went painting. We started out great, and quickly went downhill. Soon she was unable to hold up her head again. To push through he laid her head on the table and and told me what colors to paint & where. I regretted leaving the house, but she was just miserable. After painting, I drove to the parking lot of the MRI appointment. While she slept I might have cried a little.
OF COURSE, the nap had made her feel better and no one was with me to vouch for how she was earlier while we were painting. She bounced into the office, she was laughing and joking with the technicians. MRI done. Dr would call tomorrow. Dinner. TV. girls showered & ready for bed. sweet goodnight kisses and they went to bed. The last, sweet goodnight kiss before our lives crashed in on us…
Tim was working at his computer & I, am just a Mom, looking at the MRI scans from the disc they gave us after her MRI. My experience with geography of the brain come from an anatomy class in college and looking at my Mom’s scans just over a year before. A healthy brain is even and symmetrical. In my Mom’s scans, her brain tumor was an obvious out of place something in her front right hemisphere. You couldn’t miss it. Now, I was looking at Hannah’s MRI scan and to my untrained eye, everything looked equal left and right. HOW could I have been looking at that very image when the phone rang. It was hiding in plain sight.
The phone rang and I answered.
‘DeAnna, it’s Dr. __. I’m sorry, it’s not good. She has a brain tumor and needs to get to the emergency room right away. It’s serious and she might be having surgery tonight.’
Not what I expected. I went outside and threw up in my yard. I called my Aunt Judy. I couldn’t say the words. She understood what I was saying & just said, go. Get her to the ER, NOW.
The right people weren’t at the hospital to talk with us. It took 9h for us to get clear answers, they finally sent Hannah by ambulance to Children’s Hospital in Denver. It is now 4am. We were told hannah’s tumor was the size of a golf ball, in her cerebellum. She would need steroids to reduce the swelling for a week, then surgery.
The surgeon doing her resection told us to go home and make it a good week. ‘make memories’. I know what that meant. It was HARD to roll her out of the hospital in a wheelchair with that hanging over your heads. And a very long head… all the what if’s haunted us all week. I had lumps in my throat all week.. Don’t cry in front of her…
Surgery day. 9h surgery. At 3am, the neurosurgeon came to talk with us in the waiting room. Her tumor was NOT a golf ball size. I dont know how many times & how many ways he apologized for having misjudged the size of the tumor in her cerebellum. It was obvious looking into his face, he had cried before coming out. When he apologized, he was holding back tears again. Her tumor was not the size of a golf ball, it was closer to the size of a tennis ball inside of her cerebellum, still it was very near the brain stem. He said there is no tumor cells in her brainstem and he reinterated that was a very good thing. Samples were sent to pathology and Hannah was being delivered to PICU. On her 3rd day, Hannah was eating breakfast when she asked me if knew when she was going to see again. I asked her to explain her question. She said she can’t see out of her right eye and her left eye was dark. We went through several doctors, specialists, nurses, and patient advocacy. It was over a year, to get answers why she lost her vision. We had ideas thrown out, but no one could give us a ’THIS IS WHY SHE IS BLIND’ reason, until we were at her 1year out of treatment appointment. We finally had an answer that seemed to make sense. Hannah’s tumor was NOT a golf ball size tumor, it was a tennis ball size tumor. The tumor blocked the flow of the cerebral spinal fluid between her skull and spinal column. Her ventricles kept making the Cerebral Spinal Fluid, but because of the blocked flow pattern, her head just filled with CSF. The size of the tumor, the location of the tumor, the amount of CSF in her head, the pressure suffocated her optic nerves. and they were white and dying. When the tumor and fluid was removed, the pressure released, the space filled in, it was too late and the damage was done. Her eyes work fine. The messages to her brain can’t make it through.
During her treatment, I could never get my head around HOW LONG the tumor had been in her head. I braided her hair DAILY. We were Pinterest experts and I could nail a mean french braid design, and I was sick to think that the monster was under those blonde braids. No one could guess how long it was there, it’s possible it was there at birth, and kicked into high gear with puberty. My heart says that November 22, 2013, when Hannah had an unusual sleepover. She played great all day, but didn’t feel well in the afternoon and just wanted to lay on the cool bathroom floor. But how long before that time? Who knows 🙁 Hannah defied all the typical symptoms of a brain tumor patient and just did cancer her own way. Even her oncology team joked that they put the textbooks aside to treat Hannah by Hannah rules. No one really knows when their cancer showed up, but i feel that date is the first time it reared it ugliness into our lives.
Hannah’s last chemotherapy was Feb 20, 2015. 8months from her diagnosis. 15 months from that sleepover.
As I write this, Hannah is 4y 3m out from her last chemo and she is finding her new world. She attends a public school and a blind school. She plays Goalball, (Paralympic sport for blind athletes), she rides tandem bike for Children’s Hospital Colorado Courage Classic fundraiser. Last year she rode the full 150 miles!
She runs 100m & 200m Paralympic track races, She is learning to run with a guide. She has a service dog for her balance issues. She has a huge collection of Converse shoes because her nerves were damaged from chemotherapies so she can’t wear cute sandals like other girls
Overall, she kinda kicked cancer’s ass and she’s not letting it win. Not before, during or after. I think about Hannah as a toddler… and that stubborn streak…. I watch her ride a bike, I watch her run a race, I see her work so hard to work her ‘accessibility tools’ which DO make life easier for her, but MAN it takes a lot to learn how to use them when you can’t see the buttons, the screen. She was dx at 12. She didn’t have a phone yet. So, she She learned technology blind. Her first iPhone was after she had lost her vision. I see how tired she gets, how frustrated and mad she gets, I know she’s sad to have lost so much, and I think how unfair life is for her and I’m legitimately concerned for her when I’m gone…. But I think back to that stubborn, beautiful, naughty toddler… and I truly believe THAT is how she survived brain cancer.
