Category: Guest Bloggers

Today’s post is from a fellow Cancer Mom whose daughter died last month. Her daughter’s story was sent to me with the hopes that others would read it, that more people would come to know her daughter and the bravery and fear and loss that come out of pediatric cancer.  

By Vashni Nilon

It all started innocently enough. My sixth grader, Lucy, came home with a headache. We had just spent the weekend away at my cousin’s wedding and she didn’t get much sleep, so I didn’t think anything of it. Next day she appeared a bit better but then threw up a little on the bus.  I took her to the pediatrician. She felt that it was a roto virus and should clear up in a few days.

The one odd thing Lucy said was she could not read. The pediatrician gave her a neurological exam which checked out and sent us home. By Saturday she was still in pain and clammy and by Sunday she was at the ER. They tried some pain killers and ran some tests but nothing was working. One pediatrician who really seemed to not like children at all told me it was probably a tension headache. Next morning, just as a precaution, they gave her an MRI.  This was when the shit hit the fan.

They discovered a mass and the edema around the mass was pushing her brain off the midline. IV steroids were administered and she was transported by the biggest, fanciest ambulance I have ever seen to Children’s Hospital of Philadelphia.  There was a pediatric neurologist on board.  This was beyond serious. Surgery was scheduled and one terribly attractive young doctor after another came to give her neuro checks, and prepare her for upcoming brain surgery. She was having none of it. She refused to be okay with brain surgery. My poor child who had nothing more serious than a cold was hooked up to machines, monitors and I couldn’t even get to her to kiss her. Taking her to the bathroom was an ordeal as we had to drag half the equipment in the hospital with her.

Somehow we survived the surgery (and the surgeon) Somehow I got my precious girl back home.  In retrospect, this was the best part of the last two years. Lucy was no longer in pain. We got to snuggle all day and watch bad television and we were blissfully unaware of the long road ahead.

As it turned out, the tumor that set up residence in Lucy’s brain was one of the most malignant, deadly tumors know to medical science. The overall survival rate is less than 10%. But we had great surgery and she was young, so we went for it. I remember our oncologist saying “We have one chance to beat this,” like we were in a spaceship and not standing in a non-descript medical office.

Basically, this tumor would need high dose radiation and lots of chemotherapy. Like all the kids you read about, Lucy did it. She strapped on the mask and got bolted to a table for 6 weeks, she took the pills, she endured the poison. We had 18 months of clean scans, of good news. Lucy managed to make the honor roll, she was in the school play, she went to bar and bat mitzvahs, she hung out with friends. There were trips to Disneyworld, The American Girl Store and DC cupcakes. She lost too much weight, had a feeding tube put in, then gained weight and had it removed.

At the 18 month mark, right after she finished treatment, Lucy had an MRI that looked questionable. It was then that her oncologist told us that if the cancer was back, Lucy would die. Just like that. No maybe we should try this, or this might be an option. Just death.  Then he sent us home for three weeks to see if she would grow a tumor. Lucy was so stressed out and in so much pain that she ended up in the hospital. Nothing was helping.

She didn’t want to die. She wanted to grow up!!!! We were sent home with so many drugs and too much time. We went on a Disney Cruise and she talked about death, and about all the things that she would miss. It was beyond heartbreaking. Then, miraculously, the MRI showed no growth. Then a PET scan showed no growth. Lucy finished seventh grade and started summer camp. Life was so good.

Less than two months later Lucy called me at work screaming, “Something’s wrong! My head!” I told her to get her Dad.  Right after that she lost the ability to speak. Her Dad got her to the hospital. I drove separately – screaming and crying and on the shoulder as the rush hour traffic was horrible. When I got there she was intubated in a room with too many people. The social worker was a wreck. An extensive MRI study revealed that the cancer was back. Not only in the original site, but in the opposite hemisphere, in the fluid around the brain and the brainstem. It was 3 days before her 13th birthday.  The news was delivered by a 27 year old. She was given two months to live.

We tried to live.

We went on another cruise, to the beach, we did all the things she liked to do. But she knew something was terribly wrong. We had to tell her, so when her best days were behind her, Lucy was told she was going to die. Everyday she begged us to help her. All she wanted was to be a normal kid. All she wanted was to grow up. She grieved her life. She lost the ability to read, to walk, and eventually, to talk. She gained a huge amount of weight from the steroids. She took a ridiculous amount of drugs. Lucy wanted more than anything to go to school. So we went to Staples and I wheeled her around while she picked out her supplies. She put her backpack together, she carefully placed her school ID in the proper pocket. We went shopping for clothes and makeup, she got a haircut. And she went. Just for a class or two a day but she went. I sat outside her classrooms and I cried. Cried for the brave kid she was and cried for the spectacular woman she would have become. Her art teacher was amazing, She had art and then lunch with her friends in the art room. We went to the beach for two days and New York to see her Aunt. Everyday she woke up and said “I hate this.”

Everyday something was taken from her. She loved to read, to sing, to laugh, to smile. No more. Then one day she couldn’t get out of bed, she couldn’t eat. We carried her into the bathroom and bathed her for the last time.  She had suffered so much emotionally and now the physical pain was starting. Lucy’s last words were “Mommy,”  “Help Me,” and “Dying.”

The morning Lucy died, I looked in her eyes and said it was okay for her to let go. She nodded like hurry the hell up and HELP ME!!! I started screaming for more morphine. Her jaw locked, she turned blue, her breathing was labored.

This was my sweet child. My child who laughed and sang her way through life. My kind, joyous and lovely child was suffering more than any murderer on death row. And then she died. Exactly two months after the seizure. Five months after she finished treatment. There were no options for her.

This is pediatric cancer.

 

**********

This post was sent to me without a title.  I chose “Lucy, No Longer in Pain” as it was a direct pull from the words her mother wrote above, but also because I think with grief folks need the reminder that while Lucy may no longer be in pain, all those who love her (and not loved, past tense, because the love never stops — it is active, a verb, ongoing, even with Lucy no longer here to receive it) are right now experiencing the deepest pain they will ever feel.  Please keep them in your thoughts.  

This is a guest post by a friend and fellow Cancer Mom.

By Kathleen Manning

Have you ever had a déjà vu moment? You know, a moment when you have a strong feeling that an event or an experience, that you are in the midst of experiencing, has happened before. Déjà vu is French and, when translated into English, literally means “already seen.”

I recently had a profound déjà vu experience. It happened on May 8^th, four days prior to Mother’s Day. I found myself in the market that day and nearly collided carts with another woman as I rounded a corner. And in proper grocery store etiquette, we apologetically nodded our heads and then waved to each other to go on ahead. As we were passing one another, she stopped me and put her hand on my left wrist. This complete stranger looked at me with a crooked smile and struggled to form her words. It seemed as though she had some type of neurological impairment. Perhaps she had had a stroke, although I couldn’t be certain. It was clear that she was just learning to speak English and looking for the right words. And then, completely out of context, she wished me a “Happy Mother‘s Day.” I was paralyzed, right there in front of the peanut better and jelly. My breath caught, goose bumps erupted on my skin, and my eyes welled with tears. I had just received a most incredible gift.

That was it, my déjà vu moment. You see, when I looked at this woman, this kind stranger with a crooked smile, I saw a 60 something year old immigrant woman. But I felt my 3 year-old son. I had a remarkably similar exchange with him on March 10 of 2010, just 4 months before his death.

My son, Aidan, was diagnosed with medulloblastoma, a vile malignant brain tumor, just six days before Christmas in 2009. His tumor was resected just two short days after its discovery. After surgery, Aidan was brought up to his room to recover and slept off the anesthesia most of that day. When he woke up, he was different. He had a blank stare and he didn’t speak. We were informed that one of the risks of surgeries in the area of the cerebellum was the development of something called cerebellar mutism, a symptom complex that includes decreased or absent speech, low muscle tone, unsteadiness and deceased coordination, and the inability to coordinate voluntary movements. Mutism produces a severe incoordination of the motor aspects of speech. This means that Aidan didn’t lose his language. He simply couldn’t get his mouth to work to form his words. The muscles that one uses to form their words also happen to be the same muscles that one uses to eat and the same muscles one uses for facial expressions, such as smiling. At the time, we were told that the mutism may last for as little as six days or as long as 52 months.

It was during the first week of March in 2010 when we noticed that Aidan was starting to regain some use of his mouth and facial muscles. He was slowly learning to eat and make some sounds again. We were blessed to hear his sweet giggle that week, music to our ears. And he was beginning to smile again, although he had poor control over those facial muscles. His smile would often be crooked.

I kept a blog during my son’s illness. It provided the framework for what would become Aidan’s Cancer Story, written in 2012 to recognize pediatric cancer awareness month. The following is an excerpt from the 15^th entry in Aidan’s Cancer Story titled, “He Speaks”:

It was on March 10, 2010, Aidan’s 82nd day at Children’s Memorial Hospital, when we finally heard him speak. It was Aidan’s first spoken word since December 21, 2009. I was sitting next to him, in his hospital bed. We were in the middle of reading a story. He stopped me and gently put his hand on my left wrist. He then looked up at me with his crooked smile as he struggled to form his words. And in the tiniest raspy voice he said, “Mom.”

Aidan, keep speaking. I am listening.

Kathleen Manning is the co-founder and director of Aidan’s Army, a Chicago area non-profit that seeks to raise funds to support pediatric brain tumor research.