Grateful for Children’s Hospital

By John Carpenter, father of Danielle Rose Carpenter

I could list all the reasons that we are lucky to have Children’s Hospital, but I’ll let you read Danielle’s story and I won’t have to.

Our daughter, Danielle Rose Carpenter, was diagnosed with Stage 2 Wilms’ tumor (kidney cancer) when she was 2 years old in 2006.

We brought her to her regular two-year checkup. Just like any other checkup, the doctor pushed on her tummy. But they found something unusual … a nodule. She was checked into Children’s Hospital of Pittsburgh of UPMC that same evening. We have no idea what would have happened if we had not taken her for her regular two-year checkup. We don’t give much advice to other parents, but the one thing we profess is to NEVER miss an appointment!  Children’s Hospital did the necessary testing and determined that Danielle had Stage 2 Wilms’ tumor and that kidney removal would be necessary. Of course, we questioned the doctors to make sure that there was no alternative, but Dr. Barbara Gaines, clinical director of Pediatric General and Thoracic Surgery, informed us that there was not much right kidney left and that this was the right thing to do. I think she said, “Let’s get this tumor out of her.” This might seem short; however, Dr. Gaines said it in a way that was not only caring, but also confident.  It made us feel as though she had this horrifying diagnosis under control and that everything would be OK. So, Danielle underwent surgery the next day and had a right nephrectomy (kidney removal).

She was only 2 at the time, so she really wasn’t aware of what was happening, but we were a mess. When they brought Danielle down for surgery, they let us go with her as far as we could and then they gave her a little sleeping agent to calm her down. She immediately went limp and started laughing as hard as she could. Even then, at our seemingly darkest hour, she was stronger than all of us. Our little angel gave the rest of us what we needed to make it.

Her surgery was major and it kept her in the hospital for a little over a week. She was in pain and didn’t understand why, but her strength and Children’s Hospital’s nurses ensured that she wouldn’t be kept down long. They provided plenty of fun things to keep her mind off her condition. Danielle especially enjoyed the pets that were brought in to visit her. This really got her spirits up.

Her treatment was aggressive. They started her chemotherapy treatments while she was still in the hospital. It consisted of vincristine and dactinomycin. Needless to say, we had serious short-term and long-term concerns. Dr. Michael Wollman and Dr. Jake Cooper from Pediatric Hematology/Oncology assured us that these would not cause her long-term harm. They did let us know that it would make her not feel well and that she might lose her long, pretty hair. Small prices to pay for her health; but daunting just the same. She did lose her hair which was really hard on us, but she didn’t care. She did have her difficulties with eating and feeling well, but all in all, she weathered it well. She was always much tougher than we were.

She did really well for two years. Her hair grew back even prettier than it was before.

One afternoon almost two years later, she began to have flu symptoms, or so we thought.  We called the primary care doctor’s office and they told us just to watch her and that the flu was going around. Later that day, she became considerably worse and ashen in color. When she arrived at Children’s Hospital’s Emergency Department, she was in septic shock and had what appeared to be the entire ED staff working on her. Her tests found that she had an obstruction in her small intestine. They did emergency surgery to discover the reason for the blockage and to correct it. After hours of major surgery (again), we were told that she was the victim of adhesions (scar tissue) and that they had killed half of her small intestine. One of the doctors described it as a devastating setback. She was almost 4 years old at the time so she was much more aware and scared of the procedures, but she did not give up. She also went into intensive care for the first time. We were allowed to visit 24 hours a day, but we had to stay awake, so we did shifts. Our priest came to visit the next day on short notice. Danielle’s heart rate crashed while she was visiting and she needed some help to bring it back. Again, it seemed that the entire staff was working on her. Scary stuff.
She had a good amount of pain and she was older than the first time, so recovery was more tentative and took a little longer. A little over a week after surgery, we took her home.

Only a month later, she was there again, for the same reason. The hospital waited a couple days to see if the obstruction would “work itself out.” After much concern, it did and she came home. Finally, a little relief from what seemed to be mounting pressure.

The relief was short-lived as we had to make the trip once again. This time, she was not so lucky. They gave her a day to see if it would work out, but it didn’t. She had to undergo the same procedure again to remove seven more inches of small intestine. She was a sick, swollen, tired little girl as she had not had much of a break between this operation and the one before. She pushed through it though, and she began the recovery.

The recovery took a number of months since it did affect the way she eats and the way she processes what she eats. Being that she has less than half of her small intestine, it took time for her body to adjust. She also battled with weight. She was always a small kid, but this really had an effect on her weight.

Since then, she has now been having regular checkups and has been doing well. She is currently 8 years old and has just been given another “All Clear”.

Danielle is winning her battle, but her fight isn’t over. We watch her very closely and she still battles with weight/eating/digestive issues, all related to her cancer and the adhesion issues. She continues to fight … which will most likely be a long battle. Children’s Gastroenterology team, which includes Dr. Feras Alissa, has been fantastic. They watch her very closely and are able to see her on almost a moment’s notice if she’s having some sort of difficulty.

She is now beginning to take the offensive though. She is waging war against the larger battle for herself and other little kids against childhood cancer. Childhood cancer is different and can’t always be treated the same way as adult cancers. It is purely through research that Danielle’s prognosis is as good as it is (over 90 percent survival). Only 15 short years ago, this same diagnosis would have only been 50 percent. Hope, strength, and determination are keys in the battle for survival, but they are not enough in and of themselves. Combined with cutting-edge research/treatment, the fight against cancer will turn.

It is our duty to her and to other children who are unfairly dealing with cancer to help get the word out and support those with childhood cancer and to help garner support for the organizations, especially Children’s Hospital, that have given us so much support.