The story of Barbora

Hi, I'm Barbora and I'm an alcoholic - NO, I'm not. Let's try again. ... Hi, I'm Barbora and I'm a mom.

This is gonna be about what it's like to be a mom to a little girl Madlen.
About how the word "I" has disappeared.
About how I WANT or I NEED is almost a swear word.
And what we don't talk about.

I'd like to point out that I'm not religious. I am a very scientific and rational person, although I often go by my gut and intuition. If you had asked me more than two years ago what comes to mind when you say childhood cancer, I would have told you "leukemia and the brain". Oh, how I would have loved to live in that blissful ignorance. Before Madlen got sick we traveled a lot, in fact we were always on the go. Madlen was a tomboy like me. She was really active kid, doing a hundred push-ups a day, thirty pul-ups, and riding a scooter and trying tricks on it. She was a perfectly normal, very active child who was never been sicker than the common cold.

And then it came.

It was the end of May 2021.
The first time Madlen woke me up at 3:00 a.m. crying that her knee hurt. She denied any injury and I had to give her painkiller or she wouldn't  fallen asleep. The next morning all seams fine, after a few days the same thing happend, 2-3am, crying analgesics. Her knee was a little warm and swollen. The next day, we went to the emergency room of an unnamed Prague hospital, where they refused to examine Madlen, saying it was nothing to worry about and to recommended  put frozen peas on the knee and not to exercise for a while. But something was still niggling me. So we got to MUDr.Fraňo through friends, to whom I will be forever grateful.  At that time, Madlenka's knee was more swollen and sometimes was hurting when walking. I would like to point out that all this happened very quickly, about 10 days after first night pain.

I'll always remember sitting there, looking at the x-ray, seeing a light circle just above the joint, like a shadow. The doctor took a quick look at the images, and grabbed the  I'm sending the girls to the waiting room. My head's empty, the only thing I could think about was…. THAT CAN'T BE IT. Just the way the doctor walked around the office (like a  caged lion, while trying to arrange the earliest possible appointment for the MRI) did make me calm. It only reassured me in the worst case scenario. Especially when he   raised voice on the phone "I have an 11 year old patient here and we don't have three weeks!". This all seems so long ago, yet it was only June 1, 2021, how ironic huh, on national Children's Day they find out my child has cancer. Even though at that moment everyone was telling me how important the MRI was and no one wanted to use the word cancer or tumor. 3 days of fear and hysterical phone calls to my friends, 3 days of going outside the house crying and throwing up so Madlen wouldn't see me, 3 days of googling, 3 days that were so long.

Suddenly we're at Bulovka Hospital and we're about to have our first hospitalization, our first MR, our first pre-op. And the fear again. The fact that no one wants to tell me what its going on. Till  today I feel sorry for the doctor who admitted us. I questioned him as if he were a member of an empire. If waterboarding hadn't been banned by congress, I would do it. The answers I got were vague and uninformative. How they have to wait for a biopsy because the MR doesn't tell everything

And there's was another thing, someone starts telling you how long you are supposed see your child. That 2.5 hour visits are ok. Even if your baby is screaming in pain, which we now know wasn't just from the biopsy, but also because she has cancer. And this one in particular - its fucking painfully. It hurts so much that a lot of kids are on morphine because they can't handle it otherwise. And this is where some nurse tells you to go home, that visiting hours are over.

I got a text that day, Dr. Lesensky wants to see you at 7:00 a.m. And what do I do? Of course, I Google his name. I found interview for radio-station. The first sentence of the  interview. "Let me introduce yourself,  you are MD,  primarily for a pediatric oncology patient."

And I cry again.

I Google bone sarcomas, diagnoses and prognoses. The first thing that pops up is: survival rate and amputation.
At 7:00 a.m. on Tuesday morning, just a day after the biopsy, I'm standing in the hallway. The ground rounds its just happening . Someone looks at me and says in a rather nasty tone, "and what is SHE here for?"  The nurse just whisper, "that's the mom of the girl who had the biopsy, in room 6."  And suddenly everyone's nice. And they greet me, and for the first time I see a look in their eyes what  I'll see a thousand times.
I sit in the chair and stare blankly ahead, knowing what he's going to say. I know because I've already looked everything up online.  I sit with the stupid respirator, breathing heavily and trying not to be sick. A lump in my throat. Waiting for him to come. Well, you already know where this go right? Diagnosis by eye-- osteosarcoma of the left femur. He adds in his deep bear voice, "Even its by  the eye I'm never wrong, I'm sorry." ... he explains other things to me, but I'm trying not to cry, plus I'm stuck on one thing: how do I tell my own child "...You have cancer..."  And again I have to express my gratitude, this time to our orthopedist and surgeon MUDr. Lesensky, he explained everything and also reassured me that I acted quickly and the sarcoma is small 3,5 cm. He helped me and explained everything to Madlen and she looked forward to the transfer  to oncology as if it were Mickey's mouse club.

During the transport I had to tell the driver that we were going to oncology department I had to put all my power to say that loudly without crying. The half hour from Bulovka to Motol was endless. I was scared of what was waiting for us there. I imagined a hospital wing full of skinny, bald, dying children in pain.  Fortunately, the opposite was true. Wednesday was the first day at Motol, the first day in oncology department, and the last day I cried, at least for a very long time. What helped me that day? At that time- a stranger-now my friend Martina, said "stop asking why, you'll never figure it out and it will only destroy you." So I decided that I had to be strong. Specially as single mom and that there isn't time to break down because if I broke down how helpful would I be to Madlen? Who's gonna take care of her?

A week later, Madlen had first chemo, the first of 19, spread out over 9 months. We joined the club no one wants to be in.
We meet a new family, and the relationships you have with other moms and kids in treatment are so strong. Life and death. Literally, a lot of great kids have left. No, they didn't give up their fight, ever. I will always remember them as friends,  pure souls, fighters and incredible people. In September, M had her first surgery, a joint replacement. There were a few bumps along the way, but she successfully completed her cancer treatment after the new year.

My coping mechanism for all of this was to be informed, perhaps even morbidly so. (I have to thank the doctors again, especially Dr. Cyprová and Dr. Drahokoupilová, who were and are Madlen's oncologists and always tried to answer all my annoying questions). The answer "the blood results are good" was never  enough for me. I needed to know how much hemoglobin she had, what its her crp, white blood cell count, liver values looked like etc.  I often read clinical studies till early am. Not just about osteosarcoma, but about childhood cancer in general. What's new,  where it's new clinical trials and what is it like to get treatment in other countries. Actually, it all went by so fast. A round of chemo, check-ups, a few days at home and back again. We spent more time in Motol than at home. And suddenly - there was on paper - NED (no evidence of disease). I cried for the first time in a long time, I couldn't believe it. But Madlen didn't  finished her fight, a period of intense rehabilitation began. And then came another operation, followed by inflection at the endoprosthesis and 3 months of antibiotics. And later in May 2022, Madlen's knee opened up and the endoprosthesis had to come out. It was nobody's fault, this risk is high, with any mega-prothesis. At the time I broked down- from helplessness, from uncertainty, from losing a concrete plan. I was sleeping an hour a day, waking up with panic attacks, and then I was afraid to sleep, I had horrible vivid dreams. I was also having panic attacks 10 times a day. So I decided to seek professional help. It took another 6 months to find the right medication. And the diagnosis? PTSD (post-traumatic stress disorder) - yeah, someone brings it from Afghanistan and someone from a hospital in Prague. I'm fine now, I have panic attacks maybe once or twice a month, and I can often spot them ahead of time. I sleep and I'm not afraid to fall asleep anymore.

Since August, Madlen has been working out, she has learned how to do a split and she is doing push-ups again every day. In September she went back to school, on crutches and without a knee. In November she ran a charity run in the same condition. And finally, just before Christmas 2022, Madlen got a new knee. She was in the OR for almost 9 hours. She had to go to the  I.R.U. and had circulatory support. They let me see her that night. Madlen sat on the bed, smiling from ear to ear, watching TV.  She totally won everyone in the I.R.U. over. She looked like  if she just had out coffee and cake with friends.  And that's the funny thing about my Madeline, she was always looking forward to going to the hospital, she was always looking forward to see her friends or to do diy. I never heard her say anything like, "Mommy, I don't want to..."  She named her tumor Oskar, and even the stand had a name - Fridrych.  We always said that Fridrych brings pain, but brings cure as well. Cancer took a lot from her, years of her life, knee and part of the femur, the possibility of being a parkourist, 50% hearing. Also, her ADHD worsened dramatically and panic attacks started.  I'm writing these lines on 12/22/2022 after spending a whole day next  to M  in the ICU. It's already clear, we will spend Christmas and her 13th birthday in the hospital again like last year,  And she's not making a big deal out of it. We are hoping to make it up for it in the spring in our beloved Portugal. M had a long surgery, a new endoprosthesis and a plastic surgery, but the next long and even more important fight is ahead of her - healing, rehabilitation..

And me?
I always jump out of my skin when she complain at night that her arm or leg hurts...
I always get angry when someone says "but you can relax now, she's healthy!" She's not...
I'll always worry about her, because like M says, once you are cancer patient, you will be always a cancer patient.

I have big favor to ask you.

Please, if you happen to  know member four club.

• Don't be toxically optimistic, we know the statistics and we know the kids who made those numbers.
• Offer a shoulder and a hug.
• Offer to watch the kid for a few hours. Because for us, there is no such thing as time for ourselves.
• Ask us how we are, how we're really doing. Because almost no one asks that. And we, even though we're mothers of a child with cancer, it's still us - your friend, your sister, your daughter, it's still us, people with the same needs as anyone else. We're not just caregivers, medical professionals and toilet lady.
• And most of all, support us in seeking help, whether it's a psychologist or a psychiatrist, it's not a shame, it's not a weakness....

Barbora