An Over Due Update

Katie has fully recovered from her sprained ankle. Once again she is actively running and playing. During her recovery she was still able to have some fun. She celebrated Easter with not one, but two outdoor easter egg hunts. One with her friends and immediate family and the other with her extended family. Although she was a little sore at the end of the day, she was happy. Since that day, she hasn't favored that leg again.

She did, unfortunately, run into a little trouble with thrush again. This time, I'm sure that it was caused by her inhaler. We were issued the inhaler with specific instructions to rinse thoroughly after every use because the steroid in the inhaler could encourage the growth of thrush in her mouth. One morning, in our rush to get to school on time, I helped her use the inhaler and then we forgot all about rinsing. The next morning she had a white growth forming on the tip of her tongue. Luckily we still had some medication left over from the previous case of thrush so we started having her rinse and spit the medication twice a day immediately. The thrush never got any worse and two days later it was gone. We caught it quick.

This past week Katie has been dealing with a case of the croup again. It was keeping her up at night and she was coughing so much that she was having trouble taking a breath. However, we managed to get it under control by putting two humidifiers into her small room, rubbing her chest with Vics Vapor Rub and closing the door as she slept. In the morning, the inside of her windows were covered with condensation, but she slept well and that is all that matters. We continued to use both humidifiers until last night when her coughing seemed to be under control. She slept with just one humidifier running and the Vics last night and she still slept fine. She might be getting over this round of croup.

Things have happened on our farm since the last time we updated the blog too. One of our pigs, Charlotte, had finally grown big enough for the slaughter house and was sent to the butcher. The kids said their tearful goodbyes as we loaded her up, but they were smiling again shortly after when it was time to feed the newest addition to the farm. We acquired a new calf. He is a Jersey/Holstein mix and we named him Mocha. He is only three weeks old and has to be bottle fed by hand. Katie thinks he is absolutely adorable.

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...

Mouth Sores Again

The steroids are wearing off and Katie was just starting to return to a normal emotional and behavioral level. However, she now has something else to deal with. Yesterday afternoon she began complaining that her teeth hurt and she blamed it on getting bumped in the mouth at day care. When she complained again this morning that her mouth still hurt I asked her to open up and say ahhhh while I looked in with a flash light. What I found was more mouth sores located on the roof of her mouth this time, right behind her teeth. They are small, but white and well defined. We immediately started using the magic mouth wash again, hoping to give her some relief from the pain and minimize the length of time that she has to suffer this time.

Chemotherapy and a So-So Weekend

With Katie's numbers up, the chemotherapy resumed again starting Thursday. She had a dose of Vincristine (causes nausea) at the hospital, a dose of Zofran to combat the nausea, and a dose of her antibiotic, pentamidine. That night at home she got Methotrexate, Dexamethazone, and Mercaptopurine. All combined, a lot of chemicals went back into her body and that was just on Thursday. Friday, Saturday, and Sunday she continued to get Dexamethazone, Mercaptopurine, and Zofran. She has had a break from some of these drugs for quite some time now and she isn't used to handling them again. She spent most of her weekend just lying around on the couch or in bed. She didn't nap much, she just didn't feel good enough to get up and play. The few times that we tried to get her out, she told us she didn't feel good and just wanted to go back home. Tonight, after climbing into bed, she finally vomited for the first time since the drugs started going back in. Shortly afterward, she felt better.

Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.

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.

Still Healthy but Still Low Too.

We got Katie's latest blood test results yesterday afternoon and discovered that her ANC, while climbing, is still low. She was at 299 as of Monday night. That is going to be enough to keep us home for Christmas and to keep some friends and family away. It seems like a bad thing, but when the alternatives are considered, I am very happy to be home for the holidays. It sure beats spending them in the hospital.

So what's going on? Why are her numbers so low and taking so long to recover? The doctors have shared some theories with us. They are considering the possibility that dosage levels are too high for the chemotherapy that she has been getting at home so they are likely to start adjusting the doses and watching to see how her cell counts react. There is also the possibility that the Bactrim that she has been taking as her anti-biotic to ward off pneumonia could be causing the low ANC. Apparently, that happens in some kids. The Bactrim will be the first thing to go. We were instructed not to giver her the next dose. Instead, they are goig to try a new anti-biotic when we next go back to Fletcher Allen.

Until then, she is free to stay home with us, and take absolutely no medications of any kind. This will be the first time in a long time that her little body will be entirely drug free. That seems like a nice Christmas present.

Sick In The Night & Josh's Birthday

Well, the nausea kicked in and Katie got sick last night. She started vomiting at around 1:30am and continued to do so with little naps in between until 3am. After which, her belly was completely empty and she fell asleep. I was worried about what her blood sugar levels were going to be like this morning, but the results surprised me. Her blood sugar level was 76.

She is in a great mood this morning and is feeling fine so far. Hopefully, she stay's fine the rest of the day and gets to enjoy her brother's birthday party.

Josh turned six today. He is very exited and happy to be "all grown up" and big now. We let him open a couple of present first thing this morning to help him get through the day until his party starts at 4pm. He is managing to contain himself, but only barely. I asked him this morning if he had heard the rest of us taking care of Katie in the night and he hadn't. He had managed to sleep right through lots of noise and a great many lights. Lucky him.

Now I'm off to finish getting things ready for the birthday part. Amy has already been working feverishly this morning on last minute details and my only responsibilities so far have been cooking breakfast and entertaining the kids. Time for a little more.

Time For a Blood Test

Today is Wednesday and that means we have to go to North Country Hospital for a blood test before tomorrow's treatment. If her ANC is at 750 or above, she is going to get a lumbar puncture for chemo and more chemo through her IV. This does is supposed to be nasty, and the drugs being used are the same drugs that were used when she ended up in the hospital the first time. We aren't looking forward to this round.

If her ANC is still below 750, then the treatment will be put off for another week. I'm hoping they can put it off since she still hasn't fully recovered from the side-effects of the last treatment two weeks ago.

Her morning has gone reasonable well so far with only one trantrum. Her biggest complaint is that her feet hurt which is a real problem because she refuses to walk. I get nervous when she refuses to walk.

Looking Up

I have more data and Katie is being far more cooperative. She allowed her doctor to finally do a physical abdominal exam and the doctor couldn't find anything wrong. So, since the x-rays, CT scans, and physical exam have all ruled out the dangerous problems, the pain is likely to be a ghost pain caused by the Vincristine she received last Thursday. The effects of that dose of Vincristine should be wearing off soon.

Her temperature is a happy 37C. Her pulse while awake and talking is 122. Her blood pressure is a nice 100 over 53. In addition, her white blood cells are climbing and it looks like they are actively fighting some kind of infection. With her own immune system coming back and starting to work, she is coming off some two of the antibiotics and the Benadryl that has been used to control an allergic reaction to one of the antibiotics. This is all very positive and the chances of coming home on Monday or Tuesday are looking better all the time.

We're Settling In

OK, we have some more information. Pneumonia has been ruled out. Katie's lungs are just fine. Her bowels are moving - albeit slowly. Her blood pressure is rising. Her heart rate is slowing. Her fevers keep coming and going still, but none have been very high. She is pretty well stabilized at this point.

One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.

Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.

Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.

By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.

3:30 AM At Fletcher Allen

Although the night started out at North Country Hospital, that is not where we stayed. The doctors at Fletcher Allen were not thrilled to hear Katie's vital signs and symptoms so they wanted us brought to them ASAP. Really, we probably just should have driven to Fletcher Allen straight away. Things didn't go as well as they should have at North Country. We left home at 9:30 and Katie hadn't had an IV put in or any blood tested or any medications given until after 11:30. In addition, it was the first time that someone had been on duty who knew how to access Katie's port during one of our emergency visits since this whole process started and that person was unable to properly access her port after a couple of tries. Port access is usually a quick ten seconds and its over with. Last night, each attempt was drawn out to thirty seconds or more with Katie in pain and afraid the whole time. When that failed, an IV was attempted in her arm with the same results. The nurse couldn't get a vein. Finally the actual doctor was brought in and an IV was put in quickly and easily. It was very traumatic for poor Katie and I wish it hadn't happened that way. We have never had a less than excellent experience at North Country before, so I'm sure this was a fluke but is was very disappointing. The IV had only been in for ten minutes when Fletcher Allen made the call to transfer her, then we had to wait for the ambulance to transfer her from North Country to Fletch Allen. By the time Katie arrived at Fletcher Allen it was 3:30 in the morning and that's when treatment finally started.

The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.

This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.

At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.

The Drama Continues

Katie cries all day and most of the night now. Her whole body hurts and she is too weak to get up. Today, she gets to go to North Country Hospital for blood tests. Tomorrow she gets to go back to Fletcher Allen for a check up and possible transfusion, but no chemo this week. In fact, we get to stop the steroids tomorrow too. I'm interested in her blood counts today. I'm wondering if she is low enough for a transfusion yet.

Unimproved

Katie's day today was much the same as yesterday except for the fact that she seems to have conquered the constipation issue at least for now. She took several naps today, and when she wasn't napping she was lying on the couch or nibbling at some food. No playing and no leaving the house. Those things would have required more energy than she was willing to put forth.

Josh and I did get out of the house for a bit today and we went berry picking and fishing. We found plenty of berries, but not so many fish. We still had a good time.

A Day On The Couch

As the title implies, Katie spent most of her day on the couch. If she wasn't on the couch, she was in bed. She took at least four naps today and she never walked once. She did not have enough energy to pick her head up most of the time. Arguing made her tired so we didn't even get many tantrums.

Tylenol was our friend today. She complained of leg pains whenever a dose of Tylenol wore off. The leg pains are caused by the vincristine and there is nothing we can do about them except give her some pain reliever if the pain gets to be too bad.

We are also dealing with constipation again. She doesn't seem to feel that it is a problem yet, but we keep her on a regular regiment of laxatives to keep things flowing and for two days now, nothing is flowing. We even gave her a stronger laxative today that should have worked within six hours and we got nothing. Hopefully, that won't become a problem for her.

We will let you know how things go again tomorrow.

A Pretty Crummy Day

Katie had a pretty much all around lousy day today. The diaper rash is gone and that is about it for the good news. She started the day out with lots of crying... somewhere between 2 and 3 hours of it before she settled down, had a tiny bite to eat and took a nap. She does not have enough energy to play or even walk around for that matter. She was back to laying on the couch again for most of the day. If she wasn't on the couch she was on a parent's lap.

She was miserable, and it was as hard to watch this time as it was last time. The weather was nice today, so she wanted to get outside to walk and play and be a kid, and she told us as much. But every time, we started to get her out to do something, she would get upset and tell us she didn't feel good enough to do it. Then she just wanted to lie back down on the couch.

Her reaction to this week's treatment is a little stronger than her reaction last week or the week before that. Hopefully it wears off again in another day or two and she can get back to being herself.

Diaper Rash

It may not be the most interesting topic to write about, but today it is Katie's most pressing concern. The doxorubicin, which we were told may make her urine pink, has had no visible effects on the color of her urine but it sure is making its presence known. Katie woke up this morning with a very wet diaper and a very red diaper rash that looked pretty sore. We treated it with a great gob of diaper cream and fresh, dry diapers all day. It looks a little better tonight... not much, but a little. I just put her to bed with a fresh layer of cream and a dry diaper. I'll just have to wait and see how she is again in the morning. And when I go to bed, I will check her again to see if she needs to be changed.

Another Treatment Behind Us

We came to the Burlington area again yesterday for another dose of doxorubicin and vincristine. Things went smoothly and well. Katie's cell counts are dropping now, but the are dropping at the expected rate and she is currently still strong and healthy.

She is back on the steroid (dexamethazone) again this week too, but this is the last week that she will have to take the steroid. I'll be interested in seeing how she reacts to it again this week.

Other than that, we are still here in the Burlington area today to celebrate her cousin's birthday. We spent the night here so that the kids wouldn't miss the birthday party and we would have to drive home and back again. Not to mention, since she is still healthy enough to have visitors, it never hurts to let her play with as many kids as possible.

Things are Going Well

Katie has been doing great these last few days. She is a little temperamental again but not as bad as she was last week when she was on steroids and doxorubicin at the same time. This week it is just the doxorubicin and she does get cranky on it, but without the added kick of the steroids she is able to manage well enough most of the time. So I guess we can rule out either to doxorubicin or the steroids as the sole cause of her really bad moods. She functions just fine on either one alone. But the combination of the two was nasty. We get the combination of the two again this Thursday. ;)
These last few days have been pretty normal for us. I have spent a good deal of time in front of my computer while Katie has played around the house and spent time doing whatever it is her mother is trying to do at any given moment. Josh spent three days with my parents because his cousin Kyler was visiting them for a few days. Whenever Kyler comes for a visit, Josh goes to stay with him. He had a great time playing, fishing, swimming and hanging out.
We also bought all of our pellets for heat this winter and moved them into the basement. Now we don't have to think about that again as the price of heating oil climbs higher and higher. Tomorrow, if it isn't raining again, I get to help build a fence at the farm and then squeeze in some time for homework.

The Steroids Are In Full Effect

The Dexamethazone has taken over the lovable personality that was Katie Grace and turned her back into a very difficult, argumentative, screaming, crying mess for a good portion of each day. It unfortunately only took three days for the steroid to make its presence felt which is not what we were hoping for since she will be on the steroid for five days at a stretch, once per month for the next two years. We were hoping that by the time, the effects were really being felt, the five days would be up and she could basically continue a relatively normal life. It looks like that will not be the case. On a positive note, this current round of Dexamethazone is only going to be seven days on, seven days off, then seven days on again and we are four days into this first seven days.

Today, we are back in the Burlington area again so that Katie can get another dose of chemotherapy at Fletcher Allen while Josh and I wait for her at my brother's house. She gets the drugs she needs and Josh and I get to visit with my brother and his family for the first time in a few months.