“He was yelling down the hospital halls, ‘Best day ever!’ He was smiling from ear to ear. His sister by his side the whole time, two bald little heads walking the hospital together, side by side since the beginning of our family’s journey. I wanted to feel the same excitement and joy that both my son and daughter were feeling. But how could I?
It was about seven months since my son’s and daughter’s diagnoses of medulloblastoma, brain cancer. I thought June 8, 2018, would have been the worst day of my life – that was the day the ER doctor pulled the curtain, sat down on the chair, looked at me, and said, ‘I’m sorry, but we found a mass in the back of your daughter’s brain. But then, on June 21st, in a different ER, a few floors below from where my daughter was recovering from brain surgery and where she was diagnosed with brain cancer, another doctor pulled a different curtain, looked at my husband and me, and said, ‘I’m sorry, but we found a mass in the back of your son’s brain, the same area as your daughter’s.’
Time stopped at that moment. In a matter of two weeks, our 6-year-old daughter and 4-year-old son began their fight for their lives. Both of our babies had cancer, medulloblastoma, a type of aggressive brain cancer.
It was now seven grueling months later, and here we were, January 4th, 2019, my son at the end of his treatment, being discharged from the hospital, ready to ring the bell to signify the end of chemo. The plaque above the bell reading ‘Ring this bell three times well, its ring will clearly say, my treatments is done, this course is run, and I am on my way.’ Walking toward that bell, tears rolled down my eyes. They were tears of joy, some of fear, tears of exhaustion being released, and even tears of sadness. Because as happy as I was for my son, I still felt some sadness for my daughter.
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Ring this bell, three times well, it’s ring will clearly say, my treatment is done, this course is run, and I am on my way! 🛎. He did it! This last round wasn’t the easiest, starting with a cold and developing into pneumonia, but his little body kept fighting like it has been doing all along. 💪🏼. Thank you to our nurses, doctors/NPs, rehab team, volunteers @childrensla and our loved ones ❤️. We are filled with so many emotions right now. To the parents who have heard this bell, they can understand the joy, excitement, and gratitude we feel, but also the fear of the unknown, the “what if…” that will always be in the back of our minds. Chemo is done, but the journey continues 💛. To the parents and families in the thick of it, we feel you. We understand the exhaustion, the anxiety, the fear, the roller coaster of emotions. We are with you, taking it one day at a time, one hour at a time, as we continue our fight with Kalea and her chemo 💛. And to the grieving parents who never got to hear that bell, or who heard its ring but its sweet sound was cut too short, we can’t begin to understand, but we can continue to fight for you. Pediatric cancer awareness, research, and funding will continue to be a part of our lives. We fight for you, because your child deserved better, they deserved more 💛🎗 #fightlikenono #fightlikekalea #fightliketheaverys #medulloblastoma #pediatriccancerawareness
Her journey started 13 days before my son. She was diagnosed first, had surgery first, began her radiation before he began his chemotherapy, and yet she still had 6-7 more months of her treatment. Because of their ages, my daughter, 6 years old, was able to undergo six weeks of radiation, followed by nine rounds of chemotherapy, while my son, 4 years old, did not have radiation and instead had very high dose chemotherapy, autologous stem cell transplants, and months of being in the hospital. So here we were, leaving the hospital, celebrating my son, and I kept wishing my daughter was ringing the bell with him.
Because even before their diagnoses, they were inseparable, best friends, experiencing life together. Noah always saying ‘Me too’ when his sister was going to do something. We sometimes joke, he couldn’t even let his sister go through brain cancer without him. They recovered together after surgery, have done physical therapy together, they have seen each other cry in pain and out of fear, they have seen each other throw up, be rushed to the hospital, wake up from anesthesia, they have done it all together. When one of them gets a toy at the hospital, they always ask if they can get one for their sibling. So it felt so wrong to have only one ringing the bell.
Once again, however, it was my children that taught me another lesson. Not once did Kalea complain that her brother was done with treatment, and she was not. Not once did I ever hear ‘It’s not fair’ from either child. Leading up to the big day for Noah, Kalea was so excited knowing her brother might get a toy from the hospital upon discharge. And one week after her brother rang that beautiful bell, she was back at the hospital starting round four of chemotherapy, never once complaining. She was completely happy for her brother, her selflessness radiating from her. They talk about their plans for the future when Kalea is done with treatment, full of excitement. It makes me excited. It makes me happy knowing their bond is truly unique and special. It makes me realize that even though Noah has rung his bell, he is still on this journey with his sister, side by side.
When we got home that day from Noah’s discharge and from ringing that bell, he was wearing his end of treatment medal proudly around his neck. He held the medal in his hand, looked up at me with a smile and said, ‘I got my medal, I can’t wait until Kalea gets hers.’ Tears streamed down my face. Because no matter what, they are each other’s biggest fans.”
This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.
This story was submitted to Love What Matters by Nohea Avery of Torrance, California. You can follow their journey on Instagram. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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