My warrior,

I guess that I’ve always known this day would come. Watching you grow up so quickly has made me realize that these past five years have been nothing short of amazing. Today is your 5th birthday. A day that not too long ago, I feared we wouldn’t be able to spend together. This was a day that I could only dream about. Daddy and I have been brainstorming, trying to come up with the perfect gift for your special day. We decided to write you a letter to remind you of how truly blessed we are to still have you here with us.

When I think of you and these past five years all of the thoughts in my mind become blurry. As your mother, I’m supposed to gather up all of the amazing things you’ve done and all of the milestones you’ve reached to show you how special you truly are. Instead, my mind becomes jumbled and I find myself trying to piece everything together to somehow try and make sense of everything you’ve gone through. I always felt like I failed you as your mother. I blamed myself for you getting so sick and having to go through all of that pain.

I always try to prepare myself for the questions you might ask me when you get older, like when you said your first word or when you took your first steps. I’m scared because mommy doesn’t remember these things. Instead, I remember things like when your hair started falling out. It was on February 21st, 2013 at around 10 pm at night. I remember it so clearly because I sat on the bathroom floor crying my eyes old holding chunks of hair in my hands. I ran to the nurse’s station for a plastic baggy so I could gather up every last strand and save them. I cried so hard that night because all I wanted was for you to be a kid. A childhood isn’t supposed to consist of weekly chemotherapy, being isolated, or learning to walk holding an IV pole. Children are supposed to grow up, make friends, go to school, to college, land their dream job, get married, and have families of their own.

The sad reality of pediatric cancer is that not all kids survive.

On February 1st, 2013 at just 10 months old you were diagnosed with Stage 4 Neuroblastoma, a rare form of pediatric cancer. I remember so vividly how your oncologist asked me if I wanted to take a seat before he began to explain what it all meant. He explained to us that your cancer was in the advanced stages and had already metastasized throughout the left side of your body. Going into this battle you had a 40% chance of survival. You had a tumor the size of a grapefruit in your abdomen that was compressing your kidney, a tumor the size of a golf ball in your pelvis, and disease in the bone marrow of your left leg.

I can still feel my body sinking into that cold wooden chair thinking to myself that this must be a mistake. There was no way this was real life. Kids don’t get cancer remember? This couldn’t happen to my baby, there was no way you were as sick as they were telling me. I sat there waiting for someone to wake me up from this dream.

The very next day your doctors scheduled surgery to place a medi-port into your chest and take a biopsy of your main tumor. At this point, I knew that this wasn’t a dream that I could wake up from. This was all very real and we needed to prepare ourselves for battle. It was my mission as your mother to make sure you survived.

This new life that we were thrown into now consisted of bouncing between our home and hospitals. Mommy had to leave her job and withdraw from college courses so she could spend every minute with you. We spent the first month after your diagnosis impatient to learn the ropes. Right before your very first chemotherapy infusion, we sat down with a social worker who handed us a big red binder. This served as our welcoming packet into the world of pediatric cancer. It explained everything from the types of chemotherapy drugs you would be receiving, side effects of treatment, and even hair loss. They explained to us that most of the chemotherapy agents they would be giving you are the same drugs they give to adult patients. I thought to myself how could this be okay? She’s not even a year old and she’s receiving adult strength chemotherapy.

I will never forget the reaction you had to your first chemo infusion. We were watching your favorite show, Mickey Mouse Clubhouse, on the T.V with your godmother. You started violently throwing up all over the bed. Your body went into complete shock that night. You spiked a fever that reached 105.4. Nurses came running into the room around 3 am with bags of ice. They covered your body in ice packs desperately trying to cool your body down before you went into septic shock. In that moment I was scared out of my mind, but nothing could prepare me for the torture I would watch you go through over the next eight months.

Every week we would travel to the hospital for appointments with your oncologist. These appointments typically consisted of you being poked and prodded. We would sit in the clinic for hours on end while you were hooked up to chemo. After you would get chemo we would have to check your counts to make sure you didn’t need transfusions. We had to make sure you weren’t Neutropenic and were well enough to do simple things like go to the park, go shopping, or even be around other kids/adults. Because catching something as simple as the common cold was life threatening.

After your fourth round of chemo, we did a set of scans to see how well you were responding to treatment. Scan time meant that mommy and daddy would have to bring you to Nuclear Medicine where they would inject your tiny body with a radioactive isotope. The isotope would light up during the scan and show us where all of the active cancer was in your body. After every radioactive injection that would hand me a card that let me know you would have traces of radioactivity in your body for up to two weeks. Scan time also meant being put under anesthesia for two days straight. The results showed us that the chemo was working, but not enough for surgery quite yet. You went on to do two more rounds of chemotherapy before you were ready for your big day. The day we would travel to NYC to meet with the surgeon who would change your life forever. He agreed that you were ready for your tumor resection.

I remember sitting in his office with you on my lap and listening to him explain all of the risks that came along with this surgery. He told us you would be in the operating room for almost 10 hours. He explained to me how intricate your tumors were and that this was one of the most difficult cases he had seen. He looked me in the eyes and told me that he would treat you like his own child on that operating room table.

A few days later you went into surgery. As I kissed you goodbye and handed you over to the surgeon I couldn’t help but think this could be the last time I see you. I was so scared of losing you that day. Every bad thought ran through mommy’s mind.

I sat in the waiting room surrounded by so many people who love you. We waited for hours and hours getting small updates here and there from nurses who told us you were doing amazing. After about 7 hours the surgeon came out and told us he was all done. He was able to remove all of the tumors and parts of an adrenal gland. It would be almost a week before I would be able to see you open your eyes again. They moved you to the pediatric ICU where you laid on life support while your body began to heal. Seeing you tied down to that hospital bed with tubes everywhere broke me down into a million pieces. This was not a childhood.

After almost a month in recovery and many bumps in the road, we were able to take you home. After your major resection, you completed two more round of chemotherapy and scanned again. This set of scans changed everything. We walked into the clinic the next day and your doctor and nurses were standing at the end of the hall waiting for us. He had two thumbs up in the air and yelled to mommy that they were clear. You were officially NED (No Evidence of Disease).

In that moment it felt like the weight of the world had just been lifted from mommy’s shoulders. You did it! For eight months you fought so hard my sweet girl and you did it.

As amazing as this news sounded we knew that this battle was far from over. There was always a chance you could relapse and the cancer would come back. Mommy had to continue to fight for you. I needed to keep fighting for a cure.

While we patiently waited for your body to begin to heal from all of the harsh chemo that you received, I began researching different ways we could get involved. When you give a child chemotherapy drugs that are designed for adults it wreaks havoc on their bodies. There are many problems that can present themselves in children many years down the road even after therapy has stopped. Children are at risk of developing late effects from treatment such as hearing loss, learning disabilities, neurological issues, cardiovascular diseases, and even secondary cancers. This is where we need change.

The hospital that we chose to treat you in, Memorial Sloan Kettering Cancer Center, has been making great strides in the world of pediatric cancer research. They have teams dedicated to treating and researching specific types of cancer. Your oncologist and the entire Neuroblastoma team at MSKCC work tirelessly creating new trials and individualized treatments for children just like you, every day. These children battling Neuroblastoma and other forms of pediatric cancer depend on this life-saving treatment.

Currently, pediatric cancer research receives approximately 4% of funding from the annual budget for cancer research from organizations like the National Cancer Institute (NCI). This measly 4% is allotted for all types of pediatric cancers combined. If more people knew about the desperate need for funding this life-saving research, more kids would be able to celebrate birthdays just like you. This is why mommy continues to fight for you over four years later my sweet girl.

Happy birthday, my beautiful baby girl.

Love, Mommy