“Every Moment” as told by Mom

They tested for all sorts of things to figure out what was going on, but nothing came back. They thought maybe she had the flu and it left her legs weak. They sent us to a special pediatrician and he didn’t know what was wrong so we went home.

The following weekend, as we were driving in the car, each time we turned a corner she would yell out – crying - and I noticed she was tilting her head, which was strange. I called the pediatrician and he said we’re going to admit her in our local hospital to have more tests done.

They took her in for a CAT scan and within half an hour, the doctor said, “There is a large mass on the scan. We don’t handle this here, so you’ll be life flighted out tonight to Denver.” In that moment, it was unreal. We didn’t know what was going on. You just hear “a large mass.” I didn’t think of cancer at that moment, but I didn’t know what to think. He said that only one of us could fly out and I was a nursing mom, so I flew with her.

Danny and my mother-in-law bought plane tickets and flew to Denver. Kandice was stable that night. Over the course of that week, she had many different tests done. After an MRI, she went in for surgery and during that surgery she had a biopsy done of her tumor. It was 80mm (3.1 in.) long, which is large for a young child.

It also had spread. The large tumor was blocking ventricles where her brain drains spinal fluid so they placed a shunt to drain her spinal fluid. They also placed a broviac [port] in her chest, which is her access for chemo.

Afterwards, she was in recovery and we went back to see her. It was so hard to see her little face, with all of the incisions in my little girl. She was healing and we were taken from the ICU to the oncology floor. The following day they gathered around and told us she had AT/RT brain cancer. It was a lot of information to take in. When you’re told your child has cancer you don’t hear much. I’ve never known about cancer before and it was scary. You fear the worst. We were told she was starting chemo right away because her cancer was fast and aggressive and there was no time to spare.

She started chemo that day, and that evening she started having seizures. They put her on a drip to sedate her for about three days until the seizures stopped and put her on a medicine twice a day to control that.

She was going to need a pediatric neurologist, a pediatric oncologist, and we moved to Denver as of the day we were life-flighted.

While I stayed at the hospital, Danny had to go back and move all of our things here to Denver. Trying to comprehend our child has cancer and trying to find a place to live was stressful - it was such a big city from where we lived.

We found a place to live, and Kandice’s treatments continued. In January, we started chemo with transplant – and that was intimidating. When she went through her high dose chemo, the care for that was extensive. She needed baths every six hours and diaper changes every two hours.

She is tiny and lost a lot of weight. She became dehydrated and she wasn’t responding very well and I was in the ICU and the doctors came down and said she had bleeding in her head and might need a surgery. It was very dangerous because she had zero [immune] counts. Thankfully, we got her to a stable enough state and she healed before surgery.

They placed another shunt in her head that connects in the original shunt. That same day we were taken up to recovery floor and they said we just don’t think we got it in the right spot and did an MRI and said she was going to need another surgery. It was 1am before they did it. She had two surgeries that day and she handled it well. She was able to heal for two weeks.

Kandice gets MRIs every month. Her last round of transplant went well. Each time we are here it’s for about 2-3 weeks. She’s had so many blood transfusions and treatments. She just finished with a total of six rounds of high dose chemo with transplant.

On May 8th, Kandice started radiation. The benefits outweighed the risks and we didn’t have a choice in order for her to have the best possibility of being cured. She had radiation five days a week – for six weeks. They’ve talked about her cognitive development being affected, but she will be able to live on her own when she gets older. She may need a little extra help and I have all of the patience in the world to help her.

I remember getting a call from Julie, (the program coordinator at There With Care), saying she was bringing a snack bag to the hospital. It was very helpful as we were living in the hospital for weeks at a time.

We live in Lone Tree now and are driving back and forth to all of these appointments. The gas cards that There With Care has provided have been one of the biggest supports for us. When we’re in the hospital, we sometimes are in isolation and can’t leave the room.

Our There With Care volunteer Debby, delivers weekly and she and I have a nice relationship. This afternoon she brought some things for Kandice and she brought me a latte. I don’t know anyone here in Denver, so There With Care has also brought someone new to my life that has been really supportive. She

We’re not allowed to leave the 200-300 sq ft room. When There With Care delivers snacks and surprises, it really puts a smile on her face and on my face too. Just today There With Care delivered a toy bag for Kandice and in it there was a baby doll for her. That baby doll has been with her the whole day. These things help us get through the tough days and it’s huge. Really huge.

With all of this, I’ve been out of work and will be for quite a while, as Kandice cannot be with other children or in a day care. Danny had to relocate and get a new job. When your whole life gets turned upside down like this, you have to start over. So when There With Care helps and drops off food, that’s a big help for us. It helps us out financially, and with her compromised immune system it especially helps us so I don’t have to take Kandice out in public to the grocery store where she could get sick. It also helps to keep me safe, so I don’t get sick. They provide us with housecleaning and laundry supplies that help keep a clean home for her. There With Care has really been a blessing for us.

Our There With Care volunteer Debby, delivers weekly and she and I have a nice relationship. This afternoon she brought some things for Kandice and she brought me a latte. I don’t know anyone here in Denver, so There With Care has also brought someone new to my life that has been really supportive. She comes and visits when I’m in the hospital alone all day. It’s so nice to have a familiar face to visit with and be able to have someone here for me.

Kandice has been doing great. The doctor said that with everything that could have happened, she’s been hit with all of it. Most of the kids that would have relapsed would have by now and she has not. That is fantastic. I think it really helps being surrounded by positivity. We keep her surrounded by happiness and that keeps her going.

It’s hard, but it definitely made us all strong. Who would think that her dad and I would have made our own hero?

Her tumor has drastically shrunk, and since January she is able to walk normally again. She has the softest sweetest voice. She’s shy. She loves Olaf and Elmo, they are her buddies. She’s learning her colors, loves books, shapes, points out animals and makes sounds. She says please and thank you. She loves wagon rides and tacos. And she loves to blow kisses. We would do anything for her and we try to stay positive. We want to appreciate every moment.