Kalina - the Glorious Adventurer
Kalina’s story as told by her mum, Amy
Kalina was so unique in the best ways. She always seemed so much older than she really was. She was such a loving, thoughtful, ultra creative, meticulous, VERY independent, strong girl. Always creating something for someone! She loved the smell of Fall, fancy Thanksgiving dinners, playing games with the whole family, biking, swimming like a mermaid, exploring new places, any sort of adventure, and God! She had such a caring heart and would think of others always before herself. She was the best big sister, encouraging her brother, setting an amazing example and making him laugh like no one else could. Her smile could light up a room and the twinkle in her eye was such a bright light. Cute freckles and perfect eyebrows were her striking features that always caught people’s eye right from the start.
A favorite memory I have is this one night we went out just the two of us to a fancy restaurant all dressed up. We even rode our bikes but had to take our fancy sparkle shoes with us in the bike basket. She got all dressed up with jewelry, a touch of makeup and her own little purse. She was so excited to put all her “necessities” in it. Including lip gloss, crayons, paper and a hand wipe. It was adorable. She chatted nonstop over dinner where she raved over every aspect. Cloth napkins, tall real glasses, how the food looked, the other diners, all the art on the walls, how glad she had her purse with stuff she needed. Everything! While we waited for our meal she brought out her paper and crayons and drew the waitress a thank you picture for doing such a wonderful job. Love how her mind worked. Then when dessert came out her eyes were huge! Being all grown up the entire time but then melting into the sweet 6 year old she was was beyond adorable. To top it off she made sure we took a treat home to Dad and little brother. Couldn’t leave them out completely! A night I won’t ever forget.
Kalina was diagnosed at age 6, with nephroblastoma, also called a Wilms tumor, which can affect one or both kidneys. The most common type of kidney tumor in children. Hers was only on one side and still isolated to the kidney although it had grown quite massive, as these tend to do very rapidly. As is quite normal for this type of tumor, the only signs we had to indicate something was amiss were a few stomach aches that kept occurring at dinner over the course of a few weeks. Since it seemed to be only brief and at dinner we didn’t think much of it. When driving she would often get car sick because the tumor was pushing her stomach sitting down. With curvy roads near our home it didn’t seem that odd. Finally one night we felt a large hard lump on her side as I snuggled her in bed. I knew immediately what it was. The next day we took her in to be seen. The doctor dismissed it the entire time, even upon physical examination that something was there. I pushed for an ultrasound and she agreed reluctantly, and made us wait 4 days. I could actually start to see it protruding as she stood in the shower by the day she had the ultrasound. A kid who had never had more than a cold, never had an antibiotic, even Tylenol, ate salads, avoided sugar, was perfectly healthy had cancer. We were floored.
Surgery happened within a week to remove the tumor which had a small rupture during surgery putting her at stage 3, as well as her whole kidney, put in a port and chemotherapy and 5 radiation days began within the next two weeks. A whirlwind for the next 7 months with 20 weeks of chemo, lots of nausea, vomiting, hair loss, and hard days but she finally finished and received the NED news! Throughout she would have intense days but would find ways to still smile as she played or crafted with her brother from the couch where she lay and on very good days bike the neighborhood. The next 10 months she recovered from treatment, dealt with gait issues, foot drop and nerve pain from the Vincristine. But, no immediate heart damage from Doxorubicin for which we were thankful. She pushed through and was finally able to start being her more normal and happy self again.
That’s when the floor fell out from under us once again. It was back. Same location for the most part and just as large as before. Going back to the scans 3 months before no evidence had been there. It happened that fast. There had been no warning signs this time. The day before she had the scans she’d run uphill through the woods for two miles laughing. We realized within the first two weeks of relapse treatment, which started immediately, that the first time was a breeze. We moved from our home in Asheville, NC to Cincinnati, OH 6 hours away, to receive the best treatment we could. After consulting with the Wilms expert in the US, there was no better choice. This is where he was and we needed to be.
COVID hit within the first month of our move and complicated all plans to have family and friends come visit to help. Also left us switching back and forth at the hospital in mad dashes since our younger son wasn’t allowed to come in due to restrictions. Having to leave our daughter alone when she was so sick even for minutes to swap each day was horrible. She had far more aggressive chemo, proton radiation for two weeks and surgery to remove the tumor, an adrenal gland and resect her vena cava. This time treatment was mainly inpatient with long hospital stays. She had a stem cell harvest, many more blood draws, lots of transfusions and week long stays to deal with nutrition which would involve getting a feeding tube and IV nutrition for weeks to help regain the massive 35% weight loss she succumbed to. She struggled physically and mentally. Drinking water was a daily battle. We had to physically carry her from the bed to the bathroom many days. Stroller rides around town were the normal, no more biking. We often wondered if she’d survive treatment. But in the end she did.
A shadow of herself and with many new issues thanks to treatment but she was NED once again. Slight hearing loss, malnutrition and left unable to absorb most nutrients she did take in, what we can only assume to be scar tissue consistently all bothered her daily. Mentally she was now free not being in treatment anymore but the scars and toll that took on her never really had a chance to heal. We realized how treatment for cancer kids never deals with actual health mentally or physically. It’s all cut, burn and poison with the medical world. Searching out actual healing takes far more than they know how to “practice”. So we sought as many ways as possible to help her recover.
She smiled again more and more each day and slowly we saw some improvements. She was able to enjoy portions of each day and do all the creative things she loved. Biking was a place of serenity for her. She would sing at the top of her lungs as she’d make loops in our cul de sac, the campgrounds we’d stay at, anywhere we’d go! To say we lived it up as much as possible would be an understatement. Life was so much more precious now. We were told at this point we had to hope it works because there was not viable options if it ever returned. Only 3 months later at the first scan since it was finally over again, crushed every hope we had. Her lung X-ray showed multiple large nodules that were quite clearly metastatic tumor. We didn’t even have to meet with the oncologist to know that whatever time she had we had to make it count. After reviewing the experimental options available that came at more cost to her body and future than they actually could help we decided to go non traditional and try and heal her as much as we could to delay what we prayed wouldn’t be the end.
She lived and loved almost 6 more months, 4 of which were somewhat OK, but full of suffering that she hid so well. After having gone through such hell I can’t imagine how she was able to push through every day and even find joy but she did. I think more for us than for herself. She loved and cared so deeply for how we perceived her to be I don’t think she ever wanted to let us down. Leaving little notes for us in places around the house was one of the ways she’d show us her love too. They still hang where she left them.
One of my favorites will always be, “you can’t see love but you can feel it in your heart”.
So true my love. So true.
We made memories to last a lifetime as a family those last months and will cherish every single one. . One of the last things she said she had wanted to do before her final decline began was “let’s play a family game if we all feel like it later”, she didn’t get that chance, her body just couldn’t do it anymore. Not being able to breath because of the tumors overtaking her lungs eventually made speaking those last days near impossible. Motioning, even with her eyes closed to tell us what she needed, it was incredible how coherent she was even with the drugs we gave her to keep her more comfortable. We’d tell her she’s be OK as we tried to offer comfort in ways she’d allow. She was so strong she wanted to be independent even in those last hard moments. We’d tell her she was ok and twice she choked out loudly “I know!” Which made us smile, laugh and cry.
Kalina, at age 8, died peacefully and gracefully at home in our arms. She knew she was about to be healed and suffer no more and that everything would finally and truly be OK. We never told her the cancer had come back that last time. Never had any more appointments to trigger her PTSD, but she knew what was happening. She knew and decided to just live and not wallow in what was happening to herself. Our family will never be the same and we will all count the hours till we get to see her again, alive and free from the constraints this world had on her. But we know that day will come and we can’t fully imagine the beauty that we will see in her and the forever freedoms from cancer and her ravaged body.
Having others know how cruel and devastating childhood cancer is is so important to us. Letting people know how strong all our children have to be and are. That there needs to be more to help them, help their whole families that are destroyed by this disease and the treatments that are available. The options aren’t enough. The awareness isn’t. Kalina would want as many people to be helped as possible and to know that God is the ultimate healer. Nothing else really matters but to know this and then you’ll be as ok as she was. Even in the worst.
The Facebook Live video about Kalina’s story as posted as part of Superhero September, 2021 can be found below: