One Big Update: Good, Bad, and Ugly

It has been a long while since we added entries to the blog, but this has not been an uneventful stretch.

First there was Christmas. We wished for and received a Christmas at home. Katie's health was good, and we enjoyed ourselves tremendously. The kids had lots of energy, and they immersed themselves in parties and play. Santa spoiled us rotten, and we had time to breathe. It was glorious.

New Year's even went off without a hitch, and the kids were happy to return to school, as were we. It is hard to believe that we are halfway through the school year. Katie continues to love school. She is always happy to get up and go. She has learned her letters. She recognizes her numbers. She can recognize (and even spell!) some words. She plays school. When her Nana asked Katie about her career ambitions the other day, she explained the full plan: She will teach at Lake Region with her parents. Then she will be President. Then she will be a surgeon. (Hmmm....Oddly enough, Joshua wants to be an engineer or an art teacher. It's hard to know whether or not to encourage the teaching madness...) Whatever the final outcome, we are thrilled that Katie takes such pleasure in doing well in school and that she has made sweet, thoughtful, energetic friends. (Joshua is also thriving at St. Paul's and has friends that we truly love.)

Katie's new project involves lots of snow and some fast skis. Joshua is a very skilled skier. He is brave, and he is fast. Katie is determined to catch up. She seems far too small to be skiing--in ski pants and a parka she is as wide as she is tall--but she got right into the J bar line at Burke with her dad, and off they went, proud mama trailing behind as Joshua went flying past. After two short sessions with her dad, she ventured off bravely on her own. Now we just need to teach her to stop (and maybe turn).

Unfortunately, we will not be skiing this weekend, as together we have managed to contract half the infectious diseases known to man in the last two weeks. Katie went to North Country hospital with ugly ear infections in both ears and with a fever that spiked through Tylenol and that continued for five days, causing her to miss an entire week of school. Before she had finished the amoxicillin, I ended up with impetigo, a skin infection that is surprisingly unpleasant and really unattractive. Joshua dragged himself through the week, tired and weepy. We thought he must be having another growth spurt. Wrong again. The lymph nodes that stuck out past his ears brought us back to our beloved pediatrician on Tuesday, where he was tested for mono. Despite all the physical indicators of mono, the test came back negative, but he is still pooped, and his swollen glands indicate that there is some kind of an infection swamping his system; because the infection remains unidentified and he cannot make it through the day without a LONG nap, he is home from school all this week. Is he contagious? Does he pose a threat to Katie? Who knows? North Country Hospital loves us, but our health insurance must have different feelings...

Katie returned to Fletcher Allen today for a lumbar puncture and her monthly chemo. She struggled with anesthesia, coughing a lot while under and producing phlegm during the procedure, so doctors had to sedate her more deeply than usual and vacuum the mucus from her airways. Gross...We are hoping that the contagion finds another family to torment and that the cough is not a sign of bad things to come. Despite the variety of germs and viruses that are likely actively attacking her body right now, her ANC is holding at 1600. Well enough to continue to live and play like any other 4-year old. Oh, well. Snow coverage is spotty after some rain last week, so we will abandon all hope of skiing and focus on getting well.

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.

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.

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...

Smooth Sailing

It seems like the whole world is getting sick right now, but not Katie and Josh. Kids in the high school where Amy and I work were getting sick left and right a little more than a week ago. Many of them had H1N1 symptoms, but our local hospital did not test them to verify the illness. Now kids in Josh and Katie's school are getting sick one after another. One of Josh's classmates is out of school today with a fever that approaches 104 as soon as the fever reducing medication wears off. Another classmate was out for an entire week with fevers every day.

Katie and Josh have both had their seasonal flu shot and the first H1N1 shot and we feel very fortunate that they were able to get them. Up to this point at least, those shots have done a fine job of protecting our children from the worst of the worst.

All Better for Halloween

Katie is feeling much better now. Her cough is gone. Her ear infections have cleared up and the fever has not returned since our evening at the hospital.

We just got back in from Trick or Treating on this Halloween night. Despite a little rain, everyone had lots of fun. Take a look at the costumes that the kids picked out this year.