On July 30, 2005, my beautiful daughter, Camryn, laid her head in my lap and opened her mouth to speak. On the roof of her mouth was a large, hard mass. As a nurse, I am trained to notice these things. Abnormalities. And I am trained to immediately run through my mind all the possible diagnoses associated with such abnormality. But on this day, I wasnt nurse. I was mom. And therefore, I pushed any and all thoughts of medical conditions out of my mind. It was nothing, I told myself. Im sure shes fine, was my mantra. It was a Saturday, so I couldnt call the doctor anyway. I mean, it wasnt an emergency, right? She wasnt in pain. There was nothing they could do at that moment. She had no fever, no signs of illness. So I waited. On a side note, my son had a terrible reaction the day before when he entered a cold pool. Hives all over his body. I was trying to wrap my head around the fact that my son was probably allergic to cold and we live in Maine. So first thing Monday morning I called the doctors office. I would like an appointment for both of my kids, I said. Um, ok, they said. What is wrong with them? I think my son is allergic to cold, I said. And my daughter has a mass on the roof of her mouth. A what? they asked. A mass. Its hard. Im sure its nothing. Im not sure who I am trying to convince more, her or me. They schedule the appointment for first thing that morning. Caleb goes first. I explain what happened at the pool. Yup, hes allergic to cold. We need an Epi-pen and need to avoid cold, including cold things to eat, since his tongue had swollen that weekend after eating a popsicle. Then its Camryns turn. The pediatrician takes one look in her mouth, turns to me and says, She needs a CT scan. Im sending you over to the hospital to have it now. Ok, no problem, I think. Just a CT. No big deal. I call my husband, Andrew, her dad. We go over to the hospital and find out she needs IV contrast for the CT. Camryn does not like this idea. It takes two sticks to get the IV. Now shes really not happy. They allow me to stay with her during the test. My husband goes behind the wall with the CT tech. They ask us to go back out into the waiting room until a doctor can read the CT. The staff looks all sympathetic now, with puppy dog eyes. We wait a long time. Some stupid cartoon is on the TV. One that I would never allow my kids to watch at home, but I am too shy to ask to change the channel. Then the pediatrician walks in. He doesnt make eye contact. He walks right past us into the back room to look at the films. More waiting. A nice staff member comes out and tells us she will watch the kids while we go to the back room with the doctor. Weird, I think. I enter the room and her scans are hanging on the wall, on the light board. I cant believe what I am seeing. A baseball-sized dark mass right where her left sinus should be. We sit down. I only find out later that my husband could see the mass as they were taking the scan, but didnt tell me because he didnt want me to worry. Silly husband, Ive been worried the whole time. Camryn has a bone tumor called ossifying fibroma. It is serious. She needs to have surgery to have it removed right away... Blah-blah-blah. I have no idea what he said next. I hardly heard anything past the word tumor. I start to cry. I never cry. I just want to leave. I compose myself before leaving the room so Camryn doesnt see me upset. My mom is at the hospital at this point. She wants to know what is wrong with Camryn. I tell her to take the kids with her and I will explain everything at home. Since my husband came from work, he has a different vehicle. We both drive home alone, trying to process what is about to happen next. The next day is Camryns 6th birthday and instead of celebrating, we are traveling an hour and a half to have a consult with a doctor from Maine Medical Center, the largest of hospitals in the state of Maine. He tells us this tumor is probably a dental tumor of some type, and is no big deal. My husband asks if he has seen this type of tumor before. He answers, Oh, yes. I see this all the time. Hmmm. They would, however, need to do a biopsy to be sure. We sign paperwork to have a biopsy as soon as it can be scheduled. I immediately dislike him. Something feels off. I knew deep down from the moment she opened her mouth that this was a BIG DEAL, but I had been pushing those thoughts way down. But a mother always knows and I knew then that he was wrong. When we got home, I called the pediatrician and told him I got the feeling that this doctor didnt know what he was talking about. The pediatrician told me he had already spoken to a colleague and had made a referral to a well-known physician at Massachusetts General Hospital. Later that day, the Maine Medical doctor called me personally to tell me that he was wrong. That her tumor was much more serious than he had originally thought and after looking at her scans in more depth, he didnt think that anyone at Maine Medical could help us and that we should go to Massachusetts to seek care. He had taken the liberty to arrange a consult for us. I told him that we had already set up a consult with Mass General so he could cancel the appointment that he made. I thanked him. He is redeemed in my eyes. The true measure of a good physician isnt that he/she knows it all; its that he/she can admit when they dont, and offer suggestions so that we can get the care that we need, even if it isnt with them. Two days later, we travel 4 hours to Mass General to see Dr. Kaban. We get lost on the way. The hospital is massive. There are people everywhere. We wait a long time to actually see the doctor and when we do, we notice he comes with an entourage. Assistants, doctors-in-training, and other staff follow him like ducklings following their mother. His bedside manner took a while to get used to (not uncommon in good surgeons), and we immediately feel a sense of relief that he knows what he is doing. He doesnt know what the tumor is yet. There is no way of knowing without a biopsy. It might be cancer. It might not be cancer. We schedule a surgery for the following week. The next days are all-consuming with phone calls, messages of sympathy, and offers of help. We ask people to pray that this isnt cancer. We stay positive for Camryn. We call the tumor her bump. We decide to make a home video of the surgery and hospital stay, and title it, Camryns Bump Movie, which closely resembles one of Camryns favorite videos, Piglets Big Movie. On August 11, 2005, Camryn has her first operation. They will remove a piece of the tumor and wait for a frozen section biopsy, which takes about a half an hour. If it is cancer, they will close her up immediately, so as to not risk spreading the cancer cells. If it is a dental tumor, they will remove it. We wait impatiently for the result. The doctor comes to the waiting area to tell us that the biopsy results revealed it was Giant Cell Carcinoma, so they did not remove any of the tumor. She will need Interferon, a type of chemo that is given by injection once daily for a year. After that, they tell us, there is usually cure. Camryn is in the hospital for 3 days. She is very swollen and cant eat because her incisions are all in her mouth. She needs IV fluids and IV medication. On the third day, she finally agrees to drink a little and we are allowed to go home. Up to this point she hasnt seen her face. She is too little to see her reflection in the mirror of the hospital bathroom. Interestingly, on the second day of this admission, we take her for a walk down to the hospital play room. Halfway down the hall, we meet another little girl of about the same age returning from the playroom. Because of the tubes, wires, and IV poles, they have to stop when they meet, in order to move around each other without bumping into other medical apparatus in the hallway. They both look up at the same time. The other girl looks horrified when she sees Camryns swollen, bruised, and slightly disfigured face. Camryn looks horrified when she sees that this girl has no hair, most likely from chemotherapy. It is interesting to think that both girls at that moment where probably thinking the same thing: Im glad Im not her. That moment in time has stuck with us through this entire journey and we think of it often, whenever we get a case of the why mes. No matter what diagnosis you have, in your mind, it could always be worse. We get lots of stares as we leave the hospital. Everyone seems curious as to what is wrong with the little girl with the swollen face. It is unclear if Camryn notices this. On the way home, Camryn needs to use the bathroom. We stop at a Dunkin Donuts and as soon as we walk into the bathroom, my biggest fear comes true. A mirror the entire length of the wall, exposing her face. I hadnt prepared Camryn for this. In my effort to protect her, I failed at preparing her for the reality of what was. I knew it was a temporary side effect of the surgery. She thought this was her reality for a future. I cant describe in words the look on her face in that moment. She was crushed. I tried to console her. It wont be like this for long, I told her. It didnt matter what I said. To her, she looked different, and that was all that mattered in that moment. The next day, I received a phone call from one of Dr. Kabans entourage. They wanted to know exactly how much Camryn weighed so they could dose the chemo correctly. They would get back to me, they said. 8 days after her operation, Dr. Kaban called. He said the final biopsy results came back and Camryn did not have cancer. A wave of relief swept over my body. Then he said this: The good news is, it is Fibrous Dysplasia. The bad news is, it is Fibrous Dysplasia. This is Camryns journey...
Posted on: Sat, 23 Aug 2014 13:54:14 +0000
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