One of the most stressful moments for families battling cancer is going through MRI day to see the progress of the treatments they have chosen. On top of the stress of finding out the status of the cancer, parents battle the anxiety of possible choices that need to be made, as well as, most children have to be sedated for the procedure, which brings a long list of side effects and jitters. Most cancer families call all of these piled up nerves as “scanxiety”.
Mackenzie is a vibrant 5-year-old, who has surpassed all odds despite her diagnosis with one of the most aggressive brain cancers called DIPG. She is 22-months post diagnosis. She is a radiant light who is showing the world what faith can do. She is an honorary NC Princess who loves sparkles, glitter, unicorns and rainbows.
The following is a blog from Mackenzie’s father talking about exactly what a scan day is like for cancer families.
Lynn and I feel compelled to share with all of you, “A day inside of the life of a cancer family on scan day.”
Keep in mind that the prior week leading up to scan day is an emotional roller coaster that leaves you unable to focus or think clearly. Yet that’s exactly what we have to do and manage to pull it off.
Scan day brings about all the thoughts and feelings of the day she was diagnosed. Has the tumor grown? She doesn’t show any signs it has, but she has tripped a few times and fallen and gotten hurt. Is that part of the tumor or just because she is now 5-years-old and tries to run out of her shoes?
Alarm set for 4:30 A.M., it goes off and both of us hit the floor running. I search for socks, shirt, and shorts. No, not that shirt, it’s scan day. No, not these shorts, it’s scan day. Lynn hops in for a 3-minute shower, and brushes her teeth. “TOM, have you seen my Mackenzie warrior princess shirt?” BOTH of us are now frantically looking for said shirt, nothing superstitious but don’t want to take any chances.
4:50 A.M. I forgot to turn on the coffee pot the night before, and now have to wait for a cup of wake up. Back to frantically looking for said shirt.
5:05 A.M. I search for my wallet, and car keys. Did I take my medicine? Where is my coffee? Phone, don’t forget your phone. “Lynn, should we get her up or wait a little longer?” Lynn still cannot find the shirt, so she moves on to something else. Coffee, medicine, put Mackenzie’s go bag together, gold fish, juice pouch, sweet tea, tiny crackers (she likes those lately), “No Tom, let’s let her sleep.”
5:15 A.M. Time to wake up Mackenzie. I grab my wallet, phone, and keys. Where is my damn coffee? Load van, start van, make sure “Frozen II” is in the player for the princess. Lynn has gotten Mackenzie ready and loaded her in the van. I run back inside to make sure we didn’t forget anything.
5:18 A.M. I stand at front door; do I need my iPad today? No. Should I wake up the big kids and let them know we are leaving? No. Do we have everything? Yeah, sure. We loaded the van and the girls are waiting.
5:21 A.M. Buckled in the van and I start driving to the hospital, “Lynn, which way is fastest today?” Lynn replies, “Tom, does it matter, no one is on the road with this COVID thing going on?” “True, let’s just head out,” I respond.
5:38 A.M. Half way to the hospital, I wonder, “did I get everything?” Mack has her iPad, go bag, and stroller and Lynn has her stuff. DING! Who’s texting us this early? Damn it, I forgot my phone, this is gonna suck. Lynn and I chit chat the remainder of the way, reassuring each other that today is no different than previous scan days. GOD has us, and he has Mackenzie, right?
6:15 A.M. We arrive at the hospital and get checked in. Man, what a process that is now! We head up to the 3rd floor for the MRI, and check-in with MRI receptionist. Mackenzie wants to play but can’t, since they’ve taken all the toys away because of the pandemic. No one else is on the floor but us; one of two patients for MRI’s today.
6:45 A.M. We are back in MRI receiving, going over notes from previous MRIs. How many has she had now? Neither of us can count at this point. We talk to the nurse, the MRI tech, the doctor, and the anesthesiologist. Wait, she doesn’t do the gas? She needs Versed, a gas that aids in sedating. We talk to the doctor again and get orders straight – give Versed to Mackenzie and daddy holds her.
7:05 A.M. Versed has taken effect and Lynn gets the team’s attention, “she’s ready.” Lynn grabs Mackenzie and carries her back to exam room. I grab all our belongings and heads to the MRI lobby to wait for Lynn. Four minutes later, here comes Lynn, “she did great, such a trooper.” I reply, “Awesome, you hungry? Want to see if we can get breakfast?”
7:30 A.M. In the hospital cafeteria, we eat breakfast and talk about how God has blessed us. We were never supposed to have this day. What an amazing day yesterday was. She had such a wonderful birthday, one the doctors said she wouldn’t have. Can you believe Joey Logano made the trip for our little girl? Always liked him and what he stands for. He tries to give back when he can.
8:30 A.M. Sitting in the 5th floor waiting room, we are still chatting about yesterday and keep reminding each other that regardless of today’s outcome, God has her, he has us, and he has our entire family.
8:55 A.M. “Mr. and Mrs. Barron? Your baby is up here and they want you to go back!”
Now from this time until 11:05 A.M., we are in the recovery room, talking, praying, and watching our baby sleep. She has woken up enough for us to go to the other side of the hospital and get the reading of her scans. Now the anxiety has really set in, we keep telling each other, she is okay, we are okay, she is okay, please God let her be okay.
11:55 A.M. The doctor meets us in the lobby, “Scans are great, two thumbs up, it’s STABLE.” I both break down and cry. Lynn breaks down and cries. The doctor explains what he has seen and that only one of us can go back to see the images with her. Mom goes back, and I head to get Chick-fil-A for my rock star baby girl.
1:45 A.M. Finally home. Lynn and I are both mentally destroyed at this point and Mackenzie is still wobbly from her sleepy medicine. We all settle in the living room for a brief rest and maybe a movie. Nope, no movie. Mackenzie is wobbling around the living room, wanting to play with all her new toys she got yesterday. Mom and Dad suck it up and play with her the rest of the day.
This is our normal, ever since the day she was diagnosed. This is the kind of stuff that happens daily, between our Asperger’s male teenager, depressed/self-harming female teenager, regular life and work! We would never want any of you to ever live this. We were not given that choice.
So, in conclusion, when we may occasionally snap at you, please know that it most likely, is nothing you’ve done, but it’s the anxiety, stress and pressure of our new normal every day without relief.
Thank you to the Barron family for sharing such personal moments with us. #MightyMackenzie
To learn more about Mackenzie or to make a donation in her honor, go to donate2csn.org/MackenzieB
