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.

Two Kids Sick!

Katie's struggle with this virus continues. For the past three days I have been applying medicated Blistex lip ointment to her lips and a little to the sores on her face. The sores on her face are looking much better. They have dried up and the red areas around them are shrinking. Her lips are looking a little better too. However, during a close inspection of her lips tonight I found another new sore on the underside/inside of her top lip again. This one doesn't seem to bother her as much as the previous ones and she did let me touch it to apply a little Blistex to the outside of it. I'm curious to see how this one will progress now that the other sores seem to be getting better.

Josh is also sick tonight. This morning he complained of a headache, but we thought it was from lack of sleep since Katie had woken everybody up last night during a bad dream. In her dream she was screaming and saying "Don't take me to the hospital!" None of us got much sleep last night. Tonight, as we were putting Josh to bed, Amy noticed that he felt warm so she took his temperature. He has a fever of just over 100 and he is complaining of the headache again. We'll keep an eye on him through the night and see how he's feeling in the morning. Maybe my parents will have two kids on their hands tomorrow...

Still Coping

Katie had a restful weekend, and shook off some of the nocturnal habits that she was displaying by the end of last week. She is still sleeping heavier during the day than at night but she is getting some balance back. These days of being cooped up with her grandparents, unable to go anywhere or play with any other kids, are schedule altering. She gets bored with nothing to break up her day and she ends up watching a lot of Dora videos and reading a lot of books. She can only watch so much TV and read so many books before the desire to nap overwhelms her. Then, with no reason to wake up, her naps last for hours and by the time bed time rolls around she isn't tired. We all look forward to her getting back to a normal routine some time in the future. We just don't know when that future will be.

The sores on her face and lips are about the same. One heals, another begins to form. I don't think we are making any real progress. One of our readers, Sarah (www.allaboutmollie.blogspot.com), suggested Clindamycin because it worked for her daughter Mollie when she was suffering from something similar. We will ask the doctors about it this Thursday when we go back for another follow-up. We have also been trying warm, moist compresses and most recently some Blistex medicated lip ointment for cold sores. With any luck, some of this will start working to clear up this infection.

End of the Week Information

There are fewer posts on here than I expected to see. I thought Amy had been updating the blog for the last couple of days but I see that wasn't the case. I apologize for the lapse.

Wednesday was a snow day for us. The whole family got to stay home from school and we spent some quality time at home relaxing. Katie was feeling good and was being playful.

Thursday, Amy and Katie went to Fletcher Allen for a follow-up appointment after last week's adventure. The blood tests revealed that Katie's ANC is still low, very low. Her ANC now rests at a whopping 40. Neutrophils that have in the past made up more than 40% of her white blood cells are now only 2% of her white blood cells.

The infection that manifested as a single sore inside Katie's mouth has spread. She now has several sores on her lips and what looks like several more sores developing on her face. At first they just look red and round - like small incidents of acne. But one on her chin has opened up and is now looking more like the sores on her lip than any acne that I have ever seen. The doctors said that the spots on her face could be some kind of reaction to the medication that she is taking now, so Amy and I are going to try giving her a little Bennedryl tomorrow to see what happens. I don't think it will do anything, but at least it will rule out the possibility of a reaction.

Healing a Little More

Katie had a good day with Grandpa and Grandma Kelley today. She fussed very little and was quite content. To top it off, she lost the dry, dead skin that was covering her upper and lower lips and hiding what was really there. Her lips look much better and some of the swelling has gone down too, but with the dead skin out of the way, we can see what is left of another open sore that had formed on her upper lip. Apparently, the first sore spread. Despite being able to see the sore now, she is looking much better than yesterday. Maybe tonight she will sleep through the night without pain medication at 2am.

She is Tough

She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.

Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.

Ushering in The New Year in The Hospital

Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.

Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.

She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.

In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.

However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.

This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.

But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.

Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.

I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.

An Ear Infection and Fluid in Her Lungs

Katie and winter have never gotten along all that well. Each year, as the temperature drops, she begins coughing, wheezing, and having trouble sleeping at night. Eventually it gets bad enough that she has to use a nebulizer to break up the mucus in her lungs and allow her to breath easier. That is how we ended up discovering that she had leukemia last winter. She had been sick for several days and even the nebulizer wasn't helping her to fight it off. She was exhausted from lack of sleep, and as we discovered at the hospital, lack of red blood cells. We had become so accustomed to her being sick that it was only after she really took a turn for the worst that we took her to the doctor.

This year, we are having none of it. Katie began coughing again as soon as we had a few cold days in a row and we began listening to her breathing very carefully. She was wheezing a little, but it all seemed to be upper respritory. A few days later it was worse. She was still coughing and wheezing more and it was sounding deeper in her chest. We used the nebulizer but it didn't seem to have any effect. So we took her to the doctor.

As it turns out, she has an upper respritory infection, and her lungs do sound like they have some mucus in them. She also has a bad ear infection that she has not complained about. After having sorted all of that out and taken a trip to the pharmacy, she was back home with a new bottle of Amoxicylin. Lets hope she gets better quickly and can stay strong and healthy for the foreseeable future.

Monday Morning

Good morning everyone. Katie was in a cheerful mood all night long despite being woken up almost every hour last night. We had a couple of blocks of 2 hour stretches that were pretty nice. She woke up hungry this morning and immediately wanted pasta. She didn't want to wait for room service to bring her normal breakfast up so we dug in Grandma Kathy's cold spaghetti and meat sauce. She loved it and ate two bowls before room service brought up her English muffin, fruit, yogurt and juice.

She is due for two shots today as part of her chemotherapy. We are waiting until Amy returns from her parents house at noon before giving her the shots so that both parents can be there to comfort her.

Josh is currently out and about with his friend Jack King and family. Barb and Bill, Jack's parents, offered to take josh with them for a time this morning for some play time. He was really eager to go. Thank you Barb and Bill for helping to make this easier for Josh.

Kate is a little sluggish this morning with only small bursts of energy. She is currently sitting on my lap asking to go back to her room to lie down. We have only been out of the room for 10 minutes at this point.

The doctor told me again this morning that it is very likely she will be allowed to go home Wednesday. He said hers has been the perfect text book case so far. She and her leukemia are responding to the chemotherapy just as they should. She is still constipated, but with the sudden increased appetite, that should pose a problem for much longer. Then they begin weening her off of the IV and getting her ready to go home. Knock on wood. We may be out of here soon.

However, when we get home, don't come visiting right away. She is only allowed to see people who she has had frequent and regular contact with before coming to the hospital, and even those people need to wear masks. The theory is that she already has the germs and viruses in her body that those people are carrying. The doctors do not want her exposed to any new germs and viruses from any person she gets to see only every few months or so. As her immune system continues to get worse, her visitors will be restricted to just her parents, her Nana, and her brother. And since we all work in schools, bringing home lots of germs through the course of the year, we may all have to wear masks at home.