I told them the first day to treat me like a medical student. I asked them to share all information, current studies, lab results, everything, with me. I told them, in advance, that I hoped they wouldn’t be offended by lots of questions, because knowledge was comfort to me.

If the doctors at Children’s told me to do something, I didn’t question it because I trusted them.

Whenever my daughter was hospitalized, I made a point of kindly reminding doctors and nurses that she was extremely sensitive, and would benefit from quiet voices and soothing explanations of anything that was about to occur, such as taking temperatures, vital signs, or adjustments to her IV.

The best part about the doctor is when he gives me bubble gum. The worst part is when he’s in the room with me and my mom and he only talks to my mom. I’ve told him I don’t like that, but he doesn’t listen.

Leeann’s doctor here in town has been great. She knows how to talk to kids without talking down to them. She would take the time during her hospital rounds to help Leeann with her homework and laugh at all of our stupid jokes. A good sense of humor was a must for all of us.

We had a problem with the pediatrician’s office not calling me with the results of my daughter’s blood work in time for me to call the clinic. This would result in worry for me and a delay in changes to her chemotherapy doses. I told the pediatrician’s nurse that I knew how busy they were and I hated having to keep calling to get the results. I asked her if it was possible for them to give the lab authorization to call me with the results. They thought it was a great idea, and it worked for years. The lab would fax the doctor the results, but call me. Then I would call the clinic and get the dose changes. The clinic would then fax that information to the pediatrician’s office. It was a win/win situation: the pediatrician’s office received no interruptions, they got copies of everything in writing, and I got quick responses from the clinic on how to adjust her meds to her wildly swinging blood counts.

We found that sitting down and talking things over with the nurses helped immensely. They were very familiar with each drug and its side effects. They told us many stories about children who had been through the same thing and were doing well years later. They always seemed to have time to give encouragement, a smile, or a hug.

While I truly supported the teaching hospital concept, it was difficult to deal with a first-year resident who couldn’t do a spinal tap or insert an IV. We had a tendency to lose patience rather quickly when our child was screaming and the doctor was getting impatient. More than once we requested a replacement and had someone else do the test.

One day in the hospital, a group of fellows came in and announced that they were going to do a lung biopsy on Jesse. I told them that I hadn’t heard anything about it from her attending, and I just didn’t think it was the right thing to do. They said, “We have to do it,” and I repeated that I just didn’t think it needed to be done until we talked to the attending. They seemed angry, but we stood our ground. When the attending came later, he said that they were not supposed to do a biopsy because the surgeon said it was too risky of an area in the lung to get to.

Few children were on the same protocol at the time my daughter was being treated. The attendings always knew exactly what was supposed to be done, but the fellows sometimes made mistakes. I was embarrassed to correct them, but I just kept reminding myself that they had dozens of protocols to keep track of, and I had only one.

It was important for us to make sure that we were educated about all aspects of this disease without fear. The more we read and researched the better equipped we were to make decisions. It’s important to know the bad news also. An added benefit to constant research was that I stumbled upon more and more survivors of PNET and medulloblastoma. This gave us hope and it only came from continuous research. In our family, I left my job and became the main researcher and home/care coordinator, while my husband continued to work.

One technique I use to keep from forgetting what I want to say at the doctor’s appointment is to type out an agenda for the appointment. I also make a copy for the doctor. This helps me stay calm and focused on the agenda, and it gives me and my doctor a written record of what our concerns were, and what was discussed during the appointment.

When my daughter was in the hospital one time, the nurse came in with two syringes. I asked what they were, and she said immunizations. I said that it must be a mistake, and the nurse said that the orders were in the chart. So I checked my daughter’s chart, and the orders were there, but they had another child’s name on them.

I sent thank-you notes to three residents after my daughter’s first hospitalization. The notes were short but sweet. I wanted them to know how much we appreciated their many kindnesses.

I always try to thank the nurse or doctor when they apologize for being late and give the reason. I don’t mind waiting if it is for a good cause, and I feel they show respect when they apologize.

Erica’s doctor would sometimes call up just to say, “How’s my little chickadee?” He really cared. It touched me that he took the time to call, and I told him that I appreciated it.

Early in my daughter’s treatment, we changed pediatricians. The first was aloof and patronizing, and the second was smart, warm, funny, and caring. He was a constant bright spot in our lives through some dark times. So every year during my daughter’s treatment, she and her younger sister put on their Santa hats and brought homemade cookies to her pediatrician and nurse. This year was the first time she was able to walk in, and she looked them in the eye and sang, “We Wish You a Merry Christmas.” Her nurse went in the back room and cried, and her doctor got misty-eyed. I’ll always be thankful for their care.