"Dad, I really wanna do this!"

The months and years fly by. Each checkup brings better and better news. The tumor has not come back. Kiddo has caught up with all but the tallest kids in her class. She's doing so well in school that we suspect that the neurosurgeon added in some extra brains when he took out the tumor. Hopefully, cancer is a thing of the past.

Of course, Kiddo gets mail from the Children's Hospital all of the time. We always let her open and read it, as it's 'her mail.' One morning in the spring of 2010, she got a flyer for a charity 5K run/walk for the Hospital. She had it in her room for a couple of days before she brought it out to me. She handed it to me and said, 'Dad, I really want to do this!' I said that was great, but did she want to run it or walk it? 'I want to run it.' she said. 'OK,' I said, 'but we'll have to train to run the whole way. Will you do that?' She shook her head quickly in agreement.

We used the couch to 5K program, which involves alternating running and walking for 6 weeks. We started off walking for 30 minutes and finished the program 6 weeks later, running for 30 minutes. These runs were the highlight of my day, as we asked each other about our days, joked around and talked about whatever came into our minds. I was proud of how committed she was to her training.

Well, one thing led to another, and we ended up running in 10 races last year. She helped raise a lot of money for various cancer related causes and she loves racing. This year, she has races between the 5K and 10K distances picked out for pretty much every weekend this summer. Cross country beckons. Life is good.

Radiation

Things were going well throughout the fall of 2007. Kiddo had caught up in school and was cleared to play sports, ride a bike, go swimming and do whatever else she wanted. We went in for a routine checkup in the early winter, believing we had put this behind us. We were crushed when the doctor told us that the tumor had come back. They could not do a second surgery, as there was too much scar tissue from the first. She would have to go through 6 weeks of radiation as the next step to get rid of the tumor. This was almost harder to hear than her first diagnosis, because we couldn't see anything wrong with her.

They began radiation at the end of January 2008 and it lasted until March. Kiddo seemed to take it all in stride and made friends with everyone she met. Her sunny disposition made the process so much easier. Her halo became her tiara, the radiation room became her spaceship, the cyberknife became her laser and the attendants became her crew. She was a time traveling space princess. Sure, there were a few exhausting days for all of us, but all in all, she made it through radiation without any lasting ill effects.

After radiation, the months crept by as we nervously waited for her six month check up. The doctors found no signs of life in the tumor. The tumor wasn't growing, but neither was she. They decided to put her on a growth hormone, as she was barely in the 5th percentile in height for girls her age. This would mean that she would have to get daily shots. This was tough at first, but eventually she started giving herself the shots. Now she's a pro, and she's growing like a weed!

Recovery

The next few moths were filled with a lot of resting in the hospital and on the couch at home. We had to go back into the hospital for a second surgery so that they could place a cranial shunt, as her body was not circulating her cerebrospinal fluid correctly. This was a bummer, but small potatoes compared to the first surgery.

Our friends and family threw Kiddo a party as a fundraiser to help offset some of the medical bills. We will always be in awe of the love and generosity of those closest to us. We had a happy summer, filled with laid back fun. Kiddo had seemed to make a full recovery.

"Dad, What Just Happened?"

After a mostly sleepless night, the nurse came in and brought us down to the waiting area for the operating room. I held Kiddo, stroking her hair as we waited for the nurses to come and get her. When it was time to take her to the OR, the nurse said that only one of us could go with her. My wife looked at me and said, 'You're going to have to do this.' Kiddo gave our assembled family hugs and kisses and climbed back up into my arms. We made our way down to the OR, with her long arms and legs awkwardly wrapped around me. I thought about how I hadn't held her like this for a few years, but I was glad I was getting a chance to now.

I held her tight until it was time to lay her on the operating table. I stood next to her and told her that I loved her as the anesthesia took hold and she fell asleep. I gave her one more teary kiss and made the long walk back to the waiting room. Family and friends filed in and out of the waiting room throughout the day and made the hours pass a little more quickly. Finally, the surgeon came in and said that the operation went well, and that she should be awake in a short time.

After what seemed like an eternity, a nurse came in and said that Kiddo was starting to wake up and was asking to see us. My wife and I went in and saw her lying there, rolling her eyes back and forth, fighting to stay awake. She asked me in a small, raspy voice, 'Dad, what just happened?' I doubt I'll hear more beautiful words in all of my life.

#1 For Bravery

My sister in law is a nurse at Children's Hospital, so she arranged to meet us at the emergency room to help Kiddo get admitted. We checked her in and the ER nurses attempted to start an IV. It ended up taking them 7 attempts before they got the IV started. Kiddo got more stressed and upset with each attempt. I remember wondering how she was going to make it through all that she was going to face if we couldn't even handle getting an IV. In the following days, I found out how much incredible strength was in this little girl. After they had finally gotten the IV placed, a hospital employee brought in a trophy for her that said #1 For Bravery. This has become a most cherished possession.

That night, the neurosurgeon met with us and told us that he was going to schedule the surgery to remove the tumor on Friday morning. He said it was necessary to operate as soon as possible, because the tumor was causing hydrocephalus, or water on the brain. That pressure was causing her headaches and would soon cause her brain to swell, which would induce severe brain damage and maybe even kill her.

The following day was filled with running around the hospital for various tests and scans. It was a very busy day, and that was a good thing, because it kept our minds off of the impending surgery. The doctors were fairly sure that her tumor was a rare type of cancer called Craniopharyngioma. It was attached to her pituitary gland and removal by surgery was the only option at this point.

Spring Break 2007

 

We were visiting family in Chicago over spring break in 2007 when Kiddo woke up one night with a bad headache. We gave her some Children's Tylenol, chalked it up to the long nights and bad food associated with traveling and didn't give it a second thought. 

Then she woke up the following Tuesday night with another bad headache. This time, it was much worse. She was throwing up and couldn't lay down without crying. We took her to the family doctor on Wednesday and he looked her over and said she appeared healthy. However, he said, there is no good reason why she should be having these headaches and throwing up. He ordered a CT scan of her head, just to be safe. About 2 hours later, they called us back over to the hospital to show us the scans and tell us that they'd found a mass inside of her brain. They said to go home and pack a couple of days of clothes for all of us and immediately take her to the Children's Hospital in St. Paul.

I don't remember feeling afraid or sad on the drive back home. I only remember a feeling of weightlessness that must be the sign that I couldn't grasp the news that we'd just been given. I couldn't really feel the steering wheel or the pedals of the car very well. I just kept telling myself, "Don't think about it. Go home. Pack. Drive to the hospital. Just do what you've been told."

Introduction

Kiddo is our 12 year old daughter. She likes to run. She's beaten cancer twice in her young life and has been in remission since November of 2008. Now she spends her afternoons training to run charity races for cancer research and cancer related charities.