Wednesday, December 23, 2009

Mouth Sores - Gone, Cough - Returned

Katie's mouth sores have finally healed and disappeared. They were a little easier to deal with this time, probably because we caught them so early and began treating them with the magic mouth wash immediately. But over the past several days, Katie has begun to develop another cough. It isn't bad enough to keep her awake at night, but it is effecting her ability to run and play. Any sort of physical exertion usually ends up in a small coughing fit.

It just so happens that our insurance company started a new program this year and we received a phone call about that program last night. Katie has been assigned a case manager and been given access to several specialist RNs whom we can reach via phone at any time. Amy spoke to one nurse last night who, as chance would have it, specializes in Asthma. After a long chat about Katie's medical history and current cold symptoms, that nurse told her that Katie's symptoms (the cough) were signs of  unmanaged Asthma and not just a cold since she didn't have any other signs of having a cold. She asked about our Asthma control plan - We don't have one. She asked what Katie's latest results were on her peak flow meter - We don't have one. She continued to ask similar questions regarding Katie's Asthma and we continued to answer with similarly unproductive responses. It seems that we don't know enough about asthma, and Katie's numerous oncologists and even her pediatrician have focused on her cancer and its treatment while maintaining a wait and see attitude about her Asthma symptoms. The nurse was unimpressed and made several suggestions to get us started down to path to proactively managing Katie's Asthma.

As a result of last night's conversation, we will be making an appointment with Katie's pediatrician to start the conversation about an Asthma control plan that will include a peak flow meter and possibly a change in dose as well as type of Asthma medication.

Friday, December 11, 2009

Mouth Sores Return

Katie continues to struggle with cold symptoms and some apparent reactions to her medications. A mouth sore materialized on the outside of her lip yesterday morning. It was small, and though it hurt, Amy assured her that it was just dry skin on chapped lips. Then she applied Chap Stick and Katie screamed in pain. It was not a case of chapped lips, but the first of now 5 mouth sores that have appeared in the last 24 hours. The first has gotten considerably larger, and the other 4 are smaller, but developing. She has two more under her lip, up against her gum line under the first sore. Two others are developing on the inside of her cheek and don't appear to be bothering her yet.

With a combination of mouth sores and a cold, Katie stayed home from school today because she was feeling so tired and lethargic. She usually bounces out of bed in the morning, often acting far more awake than either Amy or I are feeling. This morning she wanted to stay in bed and sleep. We gave her an extra half hour and she appeared unconscious at the end of that half hour. It was hard to wake her up again and as we got her dressed and ready for school it became apparent that she wasn't going to be able to make it through the day. Amy called in sick and tucked Katie back into bed.

She got a lot of sleep today and is feeling a little better, but not 100%. I don't think this is over yet. It may be just beginning. With Christmas fast approaching, our goal again this year, just like last year, is to stay out of the hospital and be able to enjoy Christmas at home.

Tuesday, December 8, 2009

Chemo and Ear Infections

Overall, things are still going smoothly for Katie. She has only had to contend with minor incidents in the last few weeks. She had another ear infection a couple of weeks back that gave her enough of a fever to put in the emergency room at North Country Hospital for an afternoon. Her port access went smoothly and she was in at 1pm and out by 5pm. That's the kind of quick trip to the ER and back that we like.

This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.

This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...