People have often said at different events the worst news a parent can receive is “your child has cancer” and while it was the most shocking news I’ve ever received it definitely is not the worst. The worst is when a parent is told they have no more options or that they are ‘cured’ but the quality of life is severely damaged.

On September 13, 2010 my infant daughter, Delaney was diagnosed with stage 4 high risk neuroblastoma. She weighed less than 7 lbs, was adorable and symptom free. I was back at work and I had asked my mom to stop by the pediatrician to pick up a script for gentler formula because I thought she needed it. After a chance encounter by another doctor, they sent us to a local Emergency Department near our home for an ultrasound, just to check that she had no bowel obstruction and then we could switch the formula. As much of a surreal feeling the following events were I can remember the slightest of details. Delaney had the ultrasound and we were sitting making dinner plans when the doctor walked in, shut the door, took a breath and said there’s no easy way to say this. She has cancer.

Immediately we thought he had the wrong room – not because I was in denial but because she had no symptoms, no bloodwork – and although I was naïve to childhood cancers other than Leukemia I figured there had to be more to such a diagnosis other than 1 ultrasound! You hear stories of people going months with symptoms and it being undiagnosed. I asked how it could be possible, with no other tests and that’s when I was told she had a large mass on her adrenal gland. Confused I said, “Wouldn’t you need a biopsy to see if it was benign?” That’s when the doctor followed with – it’s already spread…everywhere. And we need to admit her right now.

I tried to process the news and told the doctor her christening was coming up and that is why I was switching formula earlier in the week to give her time to adjust. He told me to call the priest. That night Delaney was baptized, given the anointing of the sick and last rites, as she prepped for surgery in the morning.

We called a few other hospitals for second opinions who told us the protocol would be the same and to stay where we were. It was then I realized her case was too severe to take on.

We moved into a local hospital, not far from home, for 2 years. She was inpatient nearly the whole time. She spent her first Halloween, Thanksgiving, Christmas, Easter, and first birthday in the hospital. First words, first steps, first friends all there.

Treatment was brutal. My own medical doctor told me it was cruel to put her through this treatment and hospice would be the most humane. Delaney had other plans. I told everyone that as long as she was fighting I had to keep going. Delaney was given terrible odds at survival. She beat them.

I guess it’s the realist in me but after treatment I did not find a light at the end of the tunnel, no sense of relief, no sense of security. Unfortunately, the same treatment that saved her life destroyed many things inside her body. Delaney suffers severely from chronic pain and multiple organ damage from treatment. She has hearing aids, a feeding tube and she cannot attend school. Our hospital deemed her a success from the stance of protocol that she was on and eventually they told us they could no longer manage her side effects. We started going to specialists at 5 different hospitals.

I’m a single working mom and my family thankfully was there for me, then and now. But truthfully, I had never felt so alone. I felt like I was picking up the pieces that the hospital had left her in and trying to put her back together myself. One thing would be managed, and another would spring a leak. It was an uphill battle, far worse than during treatment. At least treatment was a plan. Finally our main hospital, where we had been prior to St. Joseph’s, said they just couldn’t see her anymore but that St Joseph’s Children’s Hospital had a pain management program that we should check out.

We came to see if they could help. The things that they are doing here at St Joseph’s weren’t happening anywhere else. They offer pain management, acupuncture, massage therapy, essential oils, laser therapy, play therapy, child life, yoga, recreational therapy, music therapy and more. It was beyond incredible and Delaney started coming once a week, then twice a week because the damage in her is unfortunately getting worse in some ways.

I have always said, the biggest asset to St. Joseph’s Health is the people. There are faces behind all these treatments, medicines and therapies that make them work. The people who work here make these children and their families feel like they have a place to turn to. Hope is something you cannot put a value on.

Not to compare but not all hospitals are doing things the same– we have been to 5, all over the country! Quick story: Delaney is seen by a specialist at a large hospital in NYC. Dr. Menell, from St. Joseph’s, had been trying to get in contact with that doctor and had no luck. At our next appointment I handed the doctor Dr. Menell’s cell phone number and said can you please call her while we are here, she needs to speak to you. She looked a bit befuddled but called and Dr. Menell picked right up, they spoke for a few minutes and when the NYC doctor hung up, she took Delaney’s hand and said “You have a doctor that really, really loves you. Never let her go” But she wasn’t telling us something we didn’t already know. Dr Menell loves Delaney. She loves the children and she treats them as if they were her own. They are not statistics to her. They are real people. And I know she does everything in her power to give them the best possible life.

Delaney is homeschooled through the town and comes to St Joseph’s several times a week. She LOVES coming. It makes her feel better. Physically, mentally and emotionally. From her favorite valet attendant who helps my mom get her out of the car in the cold when she’s feeling too much pain that day, to the girls at the front desk who give her a compliment on her outfit, to all the security guards that she gives a fist bump to – to the picture of the dog on the doctor’s door that she takes a ‘staff only’ short cut through to see if the picture has changed, to JoJo at the reception desk who lets her go through the cabinets to get ‘the good cookies’ – to all the nurses, doctors and therapists. Dr. Menell, Maureen, Dr. Bonilla, Dr. Lamacchia, Shari, Danny, Jill, Bill, Kelsey, Julie, Shaundra… she has a special relationship with all of them.

It is no secret that children are our future and investing in them is investing in a better future. Everyone has a cause that is important to them and I know everyone has to choose what they can support. It is a season of giving and I know personally when I give my time or resources to something, I want it to go where it can do the most good.

I stand here today to say that investing in St Joseph’s Health is an investment in the future, it is an investment in hope and it is an investment you can be proud of.

Kaitiln Kurdyla, Mother of Delaney