We had recently returned from New York, the vacation that I will always remember as the most beautiful of our lives. Alessandra would soon turn eighteen. She had had neck pain for a few weeks, but the doctor had thought it was a contracture during volleyball training. But the days passed, and the pain didn’t stop, dizziness and loss of balance were added. After some new exams, on March 8, 2017—a week after my sister’s eighteenth birthday—we received the news that changed our lives forever: Alessandra had a mass in the brain.

I can’t explain in words what it feels like at certain moments. In an instant, you realize that the sun, that same sun that rises every morning and lights up the day without you noticing because it is obvious that it is there, can suddenly risk turning off. They were days and nights of confusion, tears, fear, and calls with doctors (I did not yet know that we would have lived many, too many days and nights like these), which ended with what was good news: the mass (which at that time I still hoped might not be a tumor) was in an operable position.

It seemed like the best news in the world. At that moment, I learned how your whole life can truly be hanging by a thread—how every other concern can vanish and lose any importance when someone you truly love has to face something like this. Alessandra found out everything when they confirmed that she could be operated on; she was shaken, but at that moment, she showed for the first time that strength, determination, tenacity, and maturity that so surprised me in the years to come.

On Friday, March 17, Alessandra underwent the operation. In Italy, Friday the 17th is a day that traditionally brings bad luck, but my sister saw it as a positive sign because that number had always brought beautiful things to her. The operation lasted eight, interminable hours, and we lived in fear that any of the things that the team of surgeons had warned us about could happen: that Alessandra could never wake up, be paralyzed, go blind, or have irreversible brain damage. But the operation went well: the 17th, it really brought us luck.

Alessandra came out of the operating room on the couch, very tired, still a little asleep from anesthesia, with her head all bandaged and a long scar along the back of the head and neck. “Mom, do I have crooked eyes?” she asked, because of all the things the doctors had said, she was most concerned about the possibility of having crooked eyes. My parents burst into tears that had something liberating and something desperate at the same time. Their little girl was alive, talking, reasoning, moving, and seeing with her usual beautiful green (and straight) eyes.

From that moment, our life with hospitals began. When a child or teenager gets sick, the whole family does too. The disease decides and marks the rhythms, the days, the plans, the mood, the life of all family members. There is nothing else. A piece of positive news, even a small one, makes everyone euphoric, hopeful, and positive. Bad news demeans, crushes, and buries the patient, the parents, and the siblings. There is no other way.

Alessandra stayed in the hospital for a few days, but she had a very quick recovery that surprised even the doctors. Two days after the operation, she was able to walk on her own, and after less than two weeks, she returned to school. Then came the diagnosis: “I’m sorry, Alessandra has a medulloblastoma.” My sister had a very aggressive cerebellum cancer. It was a pediatric cancer and, as she was 18, it was a rare case. Shortly thereafter, she would have more than 30 cycles of craniospinal radiotherapy and then chemotherapy.

There was a lot of news to understand, digest, and metabolize. I had just landed in a world I didn’t know except by hearsay. I didn’t even know what radiotherapy was. Until then, all tumors were the same and chemotherapy was used for all, always one and always the same. A new world had just opened up to me, which on the one hand scared me a lot, but on the other, it gave me hope. The path that awaited us was long and painful, but it was a path.

In the blink of an eye, Alessandra became a woman. She had gone from being my little sister—funny, sweet, and lazy with school—to being the bravest and most mature person I had ever known. Radiation therapy began, and vomiting, mood swings, back pain, headaches, nausea with it. Her beautiful, long, and beloved blonde hair began to fall out. To avoid seeing them falling, she wanted to cut them. I still remember her big eyes and the tears held back as she watched her hair being cut strand by strand. She didn’t want to cry: with her proud look, she repeated to herself that she had a very serious and very aggressive tumor, her hair would grow back, and we had just bought a wig made especially for her with real hair identical to hers. She didn’t have to cry, she was convinced. But for a girl of eighteen, beautiful, courted, in the middle of her life, hair is important. Seeing yourself bald is seeing yourself sick. It was seeing herself as different, not only from others, but also from what she had always been: the usual Alessandra who always wanted to have fun, go out with her friends, sing, play volleyball, travel and go to the cinema with her boyfriend. Instead, the summer and the months that followed were made up of hospitalizations, radio sessions, chemotherapy, and hair shaved by her boyfriend.

Those were long and difficult months, but even in such a moment a spark of beauty continued to shine: we were united in facing this avalanche that had hit us. It was the five of us, ready to give all of ourselves to ensure that Ale could heal. And the good news arrived: the first MRI after a year of therapy showed no signs of illness. The tumor was gone!

It had been tough, but we made it. Ale was fine: she went to school, resumed playing sports, started a careful diet that doctors had recommended to us, and even stopped wearing a wig. A few months later, she told me that 2017 had been a difficult year for her but not a bad one because she felt loved so much. I will never forget that. I was so proud of her, we all were. In such situations, one can feel powerless. In those months, I had spent days looking at the needles in my sister’s skin, the bruises, the dark circles, the transfusions, and the chemotherapy bags being emptied drop by drop. Despite the effort and dedication, the whole family may put into it, the result is never certain: will the therapies be taking effect? Will the tumor still be inside her? These questions wear you down and they simply cannot be answered until the doctor calls you to report the results of the MRI. But if there was one small thing, which is not that small, in which we actually had a little power: it was to make my sister feel loved and supported. And we did it.

Months went by. Alessandra graduated from high school on a July afternoon, beautiful as the sun with short hair, and wearing a flowered dress. She discussed a thesis on cancer that she wrote with the help of our brother and me. She was delighted with her final grade: she had finished high school with a well-deserved 70. I used to tell her, every time she felt down: Alessandra, do you realize what person you are? What have you done? At 18, you faced something that most people will never face in a lifetime, managing to graduate without losing a year. Do you realize the strength and value you have? Wiping her tears, she nodded and hugged me. I never got tired of telling her what an example she was to me. I was eight years older, but I could only learn from her, and she had to know and be aware of how special and unique she was. She could go through everything in her life, and she truly deserved to conquer the whole world.

2018 was a happy year. Every three months there was a new MRI to keep us in suspense, but every time it ended with a “there is nothing!” shouted happily by my beautiful little sister.

Until December 2018.

A few weeks before Christmas, the fear that had never left us came true. With a call, the doctor decreed: “the tumor is back.” A straight, hard punch in the stomach. I started shaking and punching the world. That damned tumor had returned to haunt my sister’s body and eat her from the inside. If possible, this second time was even worse than the first: suddenly, we were brought back to the bottom of a well from which we had painfully come out. We had to fight back that frightening monster, this time with more fear, already tired, and with fewer resources. Ale discovered it the next day, and once again she gave proof of her infinite sweetness and her infinite love: she was worried about us, she told us not to worry. She would have done what there was to do this time too, step by step. Sometimes, being positive was really difficult. The words of courage I said to her were probably addressed to me too. But we had learned to deal with everything, day after day. Every story is different, each patient is a case itself. We had to put together all the courage and all the strength of this world and fight together with Alessandra, once again.

It was a difficult year, more than the first time. Cyber-knife, chemotherapy, and resonances. Metastases that went away in one area created space for others that formed elsewhere. And again, cyber-knife, radiotherapy, resonance, rachicentesis. And despite what was happening, Ale managed to get her driving license and attend a university exam. It was the art history course of Fashion Design, and I still remember my sister’s proud face when she said to me, “Lella, can you believe I scored 29/30?”

Alessandra was tired, tired, tired. And I felt exhausted, physically and psychologically. Furthermore, if I was so sick, how was she feeling? My brother, my parents, and I were devastated. Our existence depended on my sister’s health. And if we felt that way, what could Ale feel? Despite all the love, all the support, and all the help, it was her body that was struggling. It was her life that was at stake. Thinking about how she might feel made me feel a hollow stomach pain in my chest. At her age, I was on Erasmus in Spain, while she was going in and out of hospitals fighting for her life. My most serious problems were my university exams and quarrels with my boyfriend: her’s was simply surviving. I would have done anything to take her place, to be on the bed with the drips attached to the veins instead of her, but I couldn’t. I couldn’t do anything, and that impotence once again crushed me.

We clung to the doctor’s words with all the possible strength and hope. In all of that darkness called tumor, the doctor who knows more than you and is doing everything to save the most important person in your life, almost becomes a deity. And hearing right from the mouth of this divinity that he no longer knows what to do, is like receiving a straight stab in the chest.

Then, in November 2019, our endless and daily prayers seem to have been heard. The latest resonance shows no trace of the tumor. Between tears and with hearts freed from that immense weight (even if never completely, because fear never leaves you), it was Christmas, and we had the most important reason of all to toast to. The night of December 24th, Alessandra and I stayed up until 6 in the morning chatting. We didn’t know it then, but this would be our last Christmas together. I will never forget that night.

In February, we went to Rome for a weekend. We walked 15 km a day, ate typical dishes, and visited all the churches and works of art that Ale had studied and that she proudly explained to us. But that euphoria, once again, was cut short once we returned to Milan. A new resonance, a few days after her 21st birthday, showed two new small lesions, this time in the head.

My sister was angry. She wasn’t sad, she wasn’t tired, she wasn’t disappointed, she wasn’t worried: she was just angry. Very, very, very angry. And she was right: there was no single reason in the world that could justify what was happening to a girl who had always faced everything without complaining, without betraying fear, without making the pain weigh on others. In the hospital, when people much older than her arrived to start cycles of chemo or radiotherapy, she would try to cheer them up, “you’ll see, little by little, the nausea also passes.” She had been an example of courage, determination, strength, selflessness, and faith to everyone. And how had it all been repaid? With two other metastases in the head.

She underwent again laser surgery which had worked on her a year earlier. But shortly thereafter, with a speed that did not give us time to realize what was happening, everything fell apart. She felt dizzy more and more often. There were more and more episodes of loss of balance, and it became difficult for her to walk. A further resonance showed the disease had spread over the head and back. There was nothing more to do.

Pain therapy would begin palliative chemotherapy and morphine as needed to control the pain. I felt drunk. I couldn’t believe what was happening. My brother and parents explained what was happening to Alessandra, who seemed to immediately apprehend what she was told. It didn’t seem possible to me what I was experiencing: not to my family, not to my sister. Alessandra was the sun that rises every day and lights up the day without you even noticing, because it is obvious that she is there. She could not be dying. I couldn’t even pronounce the words “death” and “die.” Even today, in saying and writing them, it seems to me that they do not really belong to our story.

My brother and I contacted any hospital anywhere in the world looking for new therapies, innovative treatments, experimental protocols. We reached out to every hospital. Despite the coronavirus, we were ready to do anything, anywhere in the world. But each day was a little worse. Little by little Alessandra was no longer able to walk independently. She vomited several times a day and could not even take medicine. She had a back pain that did not go away, even with high doses of morphine. I had never seen her like this. She suffered. She suffered so much.

She tried to keep her unique and engaging sense of humor, but each day the situation was more troubling. We changed hospitals: another oncologist in Milan had offered us an alternative treatment option, reminding us, however, that a relapse of medulloblastoma cannot be cured. They told us very clearly what we should expect, but we wanted Alessandra to feel better, and as probably always happens in these situations, everyone hopes and thinks that their maybe their case will be different. That there are many children and many young people who do not make it, but Alessandra is Alessandra, and she will make it. It was a thought without any foundation except that of love, fear, and blind hope, and I repeated it to myself like a mantra every day at any time.

Things improved, but if the back pain subsided, the vomiting continued. One day, Alessandra almost fainted. We rushed her to the hospital, where she was operated on for hydrocephalus. A tube was inserted into her head that drained into the stomach the excess fluids that were causing these disturbances.

The hardest months ever followed. Alessandra could only move with the help of a wheelchair. She had to be helped to go to the bathroom, to take a shower, and after a while, also to eat. She never lost her unmistakable sense of humor. She laughed and joked, and we with her, but the smiles couldn’t hide our desperation. She used to take more than ten pills a day. Our days were marked by medicines and our weeks by the meetings with doctors, psychologists, physiotherapists, nurses, and hospital visits. There was nothing else and the lockdown imposed by COVID-19 helped to create this nest of protection and dedication for my sister’s growing needs. For me, it was an honor to help her when she needed it most. I didn’t want to do anything else. But seeing my beautiful 21-year-old sister no longer recognize her body and having to ask for help to do what was part of her daily life a few months ago is the greatest pain I’ve ever experienced. Alessandra never lost her sense of humor and dignity, just as she never stopped showing the pure and unconditional love she felt for us.

On the morning of August 10th, after having chatted with difficulty with my mother, she told me to cover her because she was feeling cold. It was the last time I heard her voice. A few minutes later, she fell into a strange sleep that alarmed us so much, we called an ambulance. Alessandra had gone into a coma, and her journey was unequivocally coming to an end.

The five of us spent 5 days in the hospital, 24 hours a day. Ale was asleep, attached to machines that ensured that her passage was peaceful and painless. The doctors could not explain what exactly had happened, the disease had probably affected parts of the brain that managed vital functions. These were intense, infinite, surreal, sad, desperate days, but also very intimate, in which we talked a lot to Ale. We remembered things, we made promises, we sang for her and listened with her the songs that had characterized those 21 years together. Her hand was never released, one of us was always holding and caressing it.

On August 15th, in the sweetest and lightest way in the world, Alessandra flew away. It was the day of Mary’s Assumption, and my parents saw it as a sign. It was over. Ale was no longer physically with us. I remember every moment, every smell, every sensation. Her beautiful face, the suspended breath, not feeling anything. The last years had been so painful and exhausting, that at that moment, the thought that she was no longer suffering relieved me. It is a thought that I still have today, even if now it hardly manages to contain the sadness and the sense of injustice. As soon as it happened, I was really comforted by the fact that her pain was over, and that she can now continue free and serene wherever she is.

Today, I have to force myself to remember this thought, because her absence is so heavy that sometimes I feel unable to breathe, and I cannot find meaning in what happened or in what I am and will be. But every morning, some days with more difficulty than others, I repeat to myself that all the suffering, pain, courage, strength, and unconditional love of my sister cannot be in vain. That it must serve something. And that it must help me avoid the risk of living a selfish life, now that, thanks to her, I have discovered what the true essence of life is, knowing the deepest pain, but also the deepest love. The day will come when no child, no boy, no girl, and no family will have to live what we have lived, and this will be possible also thanks to you, my beloved Alessandra.

My diagnosis was at the age of 12 and symptoms presented themselves as morning vomiting and double vision. It went away for two months and then I was diagnosed with Medulloblastoma brain cancer on Feb 3rd, 2014.

I am grateful for having a treatment plan that people invested in years before me, and I am raising funds for the families in the future so that they will have better outcomes and more HOPE.

I have passionately been working with my community to bring awareness, support to families and fund research since the day I was diagnosed. When you decide to go public and share your journey that is the day you have started bringing awareness. The stories that I have about how good people are and how they want to help is endless. I am most proud of my alliance with American Cancer Society in that they believe in my mission and adapted my #GoldTogether initiative nationally as of November 2018. All Relay for Life events can have a #GoldTogether childhood cancer team and 100% of the funds raised are dedicated to childhood cancer awareness, support and research. The best part is how we can empower children in their community and there are no limits on what they can accomplish. My motto is “everyone can do something to help kids battling cancer” and this is my way of making it happen.

Currently, I am a senior in High School, and I have been allowed to share my story of how faith got me through the cancer challenges. I hope that this will help kids going through whatever they are facing.

I am grateful and have hope that together, we will see the changes we want to see.

Cole Eicher

Stay in touch through https://www.cancer.org/goldtogether.com

*If anyone reading this has been diagnosed with the APC gene mutation or FAP – reach out to me because one year after my treatment was over I was diagnosed with having the APC gene mutation (it was sporadic and not heredity related for me) and it resulted in having my colon removed. I had a wonderful surgeon and do not have a colostomy bag. I was able to return to the active lifestyle I had before and would be happy to help anyone who is facing this situation.

You couldn’t tell. She was great in the car, loved all the hiking and being outside, was just pure joy. But almost immediately after returning home a few days before the start of the school year, we noticed that Millie was not acting like herself. She wasn’t as happy as she usually was, she wasn’t as talkative, she didn’t like to crawl or climb up the stairs, and she just refused to walk. She just wanted to be held. All the blood work we did came back negative, but when Millie developed a nystagmus in her left eye, we headed back to the pediatrician. 24 days after getting home from our epic roadtrip, Millie was diagnosed with Medulloblastoma at the age of 16 months.

Millie’s largest brain tumor was the size of a small orange and multiple smaller nodules surrounded it. She had to have two brain surgeries within just a few days to get it all out. Following her surgeries, she had five very intensive rounds of chemotherapy every two to three weeks. All involving hospital stays and time away from her three older sisters—Lucy, Sadie, and Willa.

We knew fevers were common during treatment and how serious they were, and we were very fortunate that for the first few months of Millie’s therapy she didn’t get any fevers. That is until Christmas Eve, when we had to head into the hospital by mid-afternoon. We had just gotten home a few days earlier from round four of chemotherapy. Our older daughters cried as we pulled out of the driveway, worried for Millie and worried we’d be in the hospital for the rest of Christmas break. We were able to come home five days later but being away from the girls for Christmas was very difficult.

Millie had an autologous stem cell transplant in February of 2022. It was the hardest few weeks of her cancer journey, but it seems to have been a very successful procedure and she exceeded all expectations, being able to leave the hospital 22 days after her transplant despite a septic scare about 14 days into the transplant. We were so grateful her release was weeks sooner than we had anticipated and that she’s continued to have clear scans since her release, including most recently an MRI of her brain and spine at the end of June.

Matt and I let out big sighs of relief when the oncologist gave us the good news. We both admitted later on the drive home that we felt like we couldn’t let all the air out of our lungs with that sigh. There is a heaviness inside of us, a worry that Millie’s cancer will come back. I suppose we are likely to carry that heaviness with us for a long time though we hope it will get a little lighter as time goes on and that we learn to live in the best possible way with it. We will repeat the scans again in three months. Just enough time for us to settle into the rest of summer and hopefully forget about those scans before they sneak up on us again.

Millie’s most resent labs also looked great and appear headed towards what would be considered “normal” range. That was also encouraging. Unfortunately, though there are no signs of cancer in the scans, Millie’s brain does have effects from the brain surgeries and all the hard, intense chemo she got. We will be meeting with her neurosurgeon soon so he can go over in more detail what that all means and what we can expect from these changes to her brain going forward.

Millie’s diagnosis has forever changed each of us. We really don’t know exactly the full extent of how her cancer treatment will affect her and what long term side effects she will have. Right now, we are just trying to adjust to a new normal. Millie is getting help with occupational, physical, and speech therapy. She is the happiest of girls, and absolutely loves chasing her three older sisters around the house. She still loves being outside, reading and being read to, playing with dinosaurs, and listening to all kinds of music. She makes us laugh every day and we are continually amazed by her strength and bravery.

If you want to read more about Millie’s journey, you can check out her CaringBridge site: https://www.caringbridge.org/visit/milliespring

All results came back perfect, but his MRI at 6 months showed some malformations in his cerebellum which would explain his symptoms. Our PT noticed his soft spot was taut (not quite bulging), so we were sent per neurologist through the ER for a shunt to be placed four months later. CT confirmed hydrocephalus, but they ordered an MRI to compare as it was a large buildup in such a short time frame and wanted to compare same imaging technique. The next morning as I was bed bathing my 10-month-old, the doctors came in and said we needed to talk.

I continued bathing Carson until the doctor demanded we sat down (as the nurse was pulling in two chairs). My heart dropped to the floor. I was expecting something awful, but never thought I would hear “Your child has cancer.” It hit me like a rock. So, the next day, we were sent for removal and biopsy. The surgeon only got about 50% of the tumor. Luckily, there was no spread. 3 weeks later, we started chemo. We were only out of the hospital for maybe 20 days during the first three “outpatient” cycles.

We followed with three high dose rounds with triple autologous stem cell transplants. He was so, so sick during the six months of treatment – so nauseous and weak but in such good smiley spirit! The bulk of the tumor still remained so we were referred for proton radiation. A second tumor removal was performed, and it was completely successful (all the cells were inactive! – the chemo killed it!!), but we still went for proton radiation as per suggestion by both teams for risk of relapse to drop significantly (his tumor was super aggressive as in 4 months it was not traced to completely blocking his 4th ventricle).

We completed 6 weeks of proton radiation to tumor bed only. He is now almost 4! Conquering every obstacle in his way! He had strabismus surgery in both eyes to correct his eye alignment post-treatment. He can walk independently with his walker. He is just starting to verbalize some! He knows all his colors, letters, numbers and shapes.

He still receives all services – pt, ot, speech, and feeding therapies. He goes to school part-time. He is our true hero!

I just finished reading Carson’s book and my son is just starting to read it. As a mom this is the scariest thing my worst nightmare… my heart goes out to you and your family💜 Thank you for continuing helping kids like my son for contributing to finding a cure for this cancer. Blessings to all of you �?

Luke’s doctors felt like he had a better than fifty percent chance of survival. He celebrated his 7th birthday in the hospital. A little over three weeks after being admitted into Cooks Children’s Hospital in Fort Worth, Luke was allowed to go home, although suffering from left sided deficits as a side effect from his surgery. A few days after being discharged from the hospital, Luke began having terrible pain in his neck.

The pain turned out to be the regrowth of the tumor that was originally removed from his brain. It caused swelling in his brain in two areas. Luke’s doctors couldn’t believe the rate of growth of the tumor and believed he likely had a gene that hasn’t been discovered yet. After heroic attempts to save his life using proton radiation, Luke succumbed to his illness within two days of being readmitted, on November 9th.

Paxton fought bravely for two years. During those two years, I was often worried that Paxton’s personality, which I loved so much, would be lost as a side effect of surgery, or chemo, or radiation, or even the difficult journey. I feel lucky that his personality never changed. Paxton celebrated his fourth birthday eight days after a craniotomy surgery that removed the medulloblastoma tumor from his cerebellum. He couldn’t walk without help at that point and he was still in pain, but he gave his family a huge smile for his birthday photo.

Paxton eventually got stronger and was able to walk again. His brain surgeon was amazing, the damage to his cerebellum was minimal and minor compared to some of the other side effects that could have happened. The loss of some coordination and strength didn’t slow him down and didn’t upset him until a couple years later when he started realizing he was slower than his friends on the school playground.

Paxton spent the summer of his fourth year of life in and out of the hospital for chemotherapy treatment and fever protocol. The doctors decided to treat him with what they called the “baby brain” protocol; intense chemotherapy first, then radiation second. They did this to delay radiation, hoping to help minimize the side effects of radiation on a young brain. The nurses and staff at the hospital were fantastic, even though we spent days upon days in the hospital, Paxton was happy. As much as a kid can be when they are often vomiting or being woken up for midnight showers to wash away Thiotepa (a chemo that is partly excreted onto the skin surface).

Paxton’s favorite thing to do at the hospital was ride his Apple Machine (a green Ezyroller). When his port “tubey” wasn’t hooked up to fluids he would zip around the hallways without me. Sometimes he would wear a Fire Chief coat and blow his fire horn while proudly showing off the badge the hospital staff had made him. The badge looked like the one all the staff wore, but Paxton’s said his job was “Fire Truck Driver.” On the days Paxton was hooked up to his IV pole he had to move slower, because I would be running after him trying to keep up while pushing the pole down the hallways.

Nighttime in the hospital was always the hardest for me. That was the time when I would lie next to Paxton as he fell asleep, and I would allow myself to cry. During the day, it was always easier to focus on the present and not look too far into the future but while snuggling against his warm body in the quiet, darkness of the hospital room, my mind would start to ask questions about the future. One of the questions that often came was “Would Paxton ever get to go to kindergarten?” Going to Kindergarten was an experience that I wanted him to have. It is a quintessential part of what I imagined his childhood would include.

The months between September, when he finished the intense chemo, and August, when I snapped that first day of kindergarten picture, were challenging but also mixed with fun and laughter. Paxton spent six weeks receiving daily sedation to keep him perfectly still during radiation treatments. I expected the six weeks of daily anesthesia to be miserable, but he loved his “sleepy medicine.” He loved the child life specialist and the sedation team that took care of him everyday. He made them laugh with all the jokes he shared and the silly things he did, and they would share jokes with him too.
“Why does a duck have tail feathers?” Paxton asked. “To cover its butt-quack!!”

He celebrated his fifth birthday during radiation treatment. The radiation team threw him a shark themed birthday. They decorated his room with balloons and gave him shark sheets and a joke book. He had so much fun that he was actually sad when radiation treatment ended. He was sad because he didn’t get to see the people he called his friends anymore, and he didn’t get his morning naps. Yes, a five-year-old boy made lots of friends with adults. His laughter, his smile, his hugs, and his kindness brought them joy and happiness.

In the summer before kindergarten, the medulloblastoma cells started growing into tumors again. He had relapsed. Despite months and months of chemotherapy and through weeks of high dose radiation the medulloblastoma cells survived. We opted to have Paxton undergo yet another surgery to have an Ommaya reservoir placed so he could receive chemotherapy directly into his CSF. We were scared about another surgery, and we wondered what other kids would say about the Ommaya when he started kindergarten. Luckily, we had the same neurosurgeon that had performed his craniotomy and Paxton was fine. The Ommaya and the surgery site were smaller than we thought they would be, and Paxton never said anything to indicate he was being made fun of. The only time he complained about the Ommaya was when the kids were learning how to do front rolls in gym class. Paxton couldn’t do them because it hurt to put pressure on his Ommaya.

On one of the first days of kindergarten, his teacher had all his classmates answer this question: In kindergarten, I want to learn to_______. Paxton’s answer was “help other friends.” Paxton didn’t live long enough to graduate with his classmates from kindergarten, but his teachers say that he was very good at sharing his love with friends and teachers. He was “always coming up with very nice things to say, and for that he was so loved by his peers.” A note from another teacher said, “Paxton, thank you for always spreading your cheerful spirit. You brought laughter, love, and sunshine into our lives.”

Even in the last couple weeks of his life his beautiful personality, his humor, and his kindness still shone. During the months he was receiving chemotherapy through his Ommaya, there were medulloblastoma cells building tumors in his hip and in his jaw. The size and pain from his hip tumor made it hard for him to walk. I had to carry Paxton from place to place. The pain didn’t stop him from showing how much he liked “help(ing) other friends.” When his cousin came inside the house bleeding on her knee, he insisted that he be picked up and carried into the kitchen where the bandages are kept. He sat on the kitchen floor administering Neosporin and placing a bandage over the boo-boo.

We donated to cureMEdullo in memory of Paxton. By donating to research to find a cure for medulloblastoma we hope that the money will do what Paxton wanted to do, “help other friends.”

Paxton’s sister, Hannah, said another profound thing one night not long after her brother died. In the darkness of her room, we talked about life and death. We talked about how much we miss Paxton. At one point Hannah said, “Paxton didn’t live a long life, but he lived a good life.”

At the time we had a 5 month old baby and, unfortunately, associated some of her early issues to possible sibling jealousy and that maybe she was trying to imitate her baby sister to call our attention.

Eventually, her physical exhaustion combined with some new physical changes, such as a droopy eye and slowness of speech made us realize something was horribly wrong.

On March 9th 2005 we expressed our concern to our pediatrician who gave us an immediate appointment. She noticed dilation in her eyes and weakness of the left side of her body. Her doctor, suspecting the worst, immediately order an MRI of the brain and 3 hours later our daughter was diagnosed with a large brain tumor which was in contact with her cerebellum. Those few words from the radiologist turned our life upside down. I could only equate the feeling to that of utterly shattered dreams.

We found ourselves in Dallas and away from our families, with a new born child and a seriously ill daughter. We needed the best hospital, doctors and nurses to care for our beautiful girl. Her doctor referred us to Children’s Medical Center in Dallas. Valerie was admitted the same day she was diagnosed but we had to wait for 5 days for the swelling on her brain to be controlled so she could have brain surgery. After almost 8 hours of surgery the neurosurgeon came out of the OR to notify us that Valerie had brain cancer.

Her treatment involved about a year of chemotherapy and radiation managed by her wonderful pediatric oncologist. She required surgery to repair crossed eyes as a result of surgery and she would eventually require physical, occupational and speech therapy.

After treatment, she was declared in remission as there was no sign of the tumor. Although, she had to complete her treatment protocol, these were the best news a parent could ever wish for.

Unfortunately, she’s had to live with many adverse side-effects from her life-saving treatment. She is considered learning disabled due to mental processing speed and short-term memory problems, which also lead to slow speech. She also suffers from fine motor control, balance and strength problems.

Nevertheless, Valerie is now a 20 year old beautiful, hardworking, responsible young lady. She finished high school with a certificate because a full diploma was out of her reach due to her learning disabilities. Thankfully, the school district offered an internship program at a hospital and, as a result, she earned her high school diploma. She is currently working as an assistant teacher in a day care and is learning how to drive. The verdict is still out on the driving.

As parents, we are grateful for everything her doctors, nurses and researchers did to save our daughter’s life. But we can only hope that further research on the matter of childhood cancer will someday lead to, not only more effective treatments, but less barbaric treatments with no permanent side-effects.