Fall Update

Not really one to slow down, Katie has now taken up Karate and Dance. Here she is posing in her new karate uniform.She is growing very well now and getting stronger every day.

A quick photo from her birthday party.

Katie and Josh heading off to school

Success

Katie's port surgery was a smashing success. She was in and back out of the hospital before she even knew what was happening. The idea of the surgery, of losing the port that had been with her for so long, was scary for her. She was very brave about going in to have surgery, but every now and then, she showed us that she was actually quite afraid. She would get upset and tell us that surgery was scary and that she was afraid of having her port out. However, when the doctor put the grape smelling gas mask on her, she went right to sleep without any complaints. When she woke up after the surgery, she had another moment of fear and told us that she was afraid of having her port out. She was quite shocked when we told her it was over and that her port was gone.

Her recovery has gone very well. She has showed no signs of discomfort or infection. In fact, she had some regular Tylenol at the hospital on the day of surgery and hasn't had any since. We were sent home from a prescription for Tylenol with Codeine, but we didn't have to fill it.

Today, we are headed back down to Fletcher Allen for a follow-up appointment and her end of treatment party. The doctors and nurses in the children's specialty clinic are actually going to throw a small party for Katie today to celebrate the fact that her treatment is over.

Going Strong

Katie is really doing well now that her chemotherapy has stopped. All of the follow-up appointments have shown that her body is recovering exactly as it should and there is absolutely no sign of cancer. I can't think of any better reason to smile. :)

Katie will have her port removed on August 13th, just seven days before she celebrates her fifth birthday on August 20th.

End of Treatment/Princess Dance Camp

We are done! More importantly, Katie is healthy! Katie trooped through one last lumbar puncture and one last bone marrow aspiration on Thursday, and we got results early Friday morning. She has been off her medications for three weeks now, and yet there is still NO SIGN OF CANCER in her bone marrow, spinal fluid or blood. Woo hoo! Our friends must think we are crazy--We have announced the news, completely unprompted, to anyone we know who walks within ten feet of Katie, and we have grinned and danced each time we have shared the news. Suffice it to say, this weekend's Relay for Life was a real celebration.

People have asked whether or not Katie understands that she is currently cancer free. She does know that she has finished her treatments and that we are extremely proud of her. She knows that the cancer is gone. She is not jumping with joy, though--she is simply taking it in stride as she has taken everything else in stride for the two and a half years (!) we have dealt with cancer. For her, it seems, this is just another event among many. For us, Thursday's phone call was like every holiday in the calendar year celebrated all at once. We are giddy with the news. Additional samples of Katie's marrow and spinal fluid traveled to Johns Hopkins, and those samples came back clean, too, so we are further reassured that the nightmare that has driven our lives for such a long time has really gone away. It's hard to explain how much lighter I feel and how much my sense of the world is already changing.

On a funny related note, Katie is enjoying camp this week: Princess Dance Camp. (No. I'm not kidding.) This is the dance studio to which I took a nearly bald, pasty white, skinny and uncoordinated Katie just as she started Maintenance therapy. She had just turned three, and she wanted to dance, so I let her try it. That was just weeks before her immune system fell apart, and she missed so many weeks of dance lessons that we finally gave up. She was heartbroken. I didn't even dare enroll her this last September--I couldn't deal with the idea that she might start again and then have to drop out. Princess Dance Camp was just too good to pass up. The Katie who waltzed into dance class Monday morning didn't even pause to look back as she left me in the waiting room and went to join the other little girls. She has long, curly, unruly hair. She has color in her cheeks and little brown freckles. She has the muscles of a serious runner. And she is strong. She dances each morning for two hours, leaping about in ballet slippers and clomping around in her tap shoes. This is all new to me--I never danced, and I don't care whether or not she becomes a prima ballerina. It is simply moving, in a way I cannot completely explain, to watch as she tackles a new challenge that was off limits for a long time. She loves to push her body. In fact, we ran laps and then went swimming after dance class on Tuesday, and she never tired. She can take the strength that she needed to muscle through a grueling chemotherapy regimen and apply it to other endeavors of her own choice now. She gets to decide how and when to use up the strength, energy and power she has regained. She is amazing.

Local readers will be pleased to know that she is participating in the Derby parade this Saturday. She is a princess on the dance studio's float. Oh, my. While I am more at home hiking, I will very proudly walk beside the float as she celebrates the good health that allows her to play this way.

Relay for Life Fundraiser for Katie

Katie's cousin Eric organized a fund raiser for Katie and our Relay for Life team. He and his soccer team raised $300 for the Relay for Life in Katie's name. At a soccer game today near Katie's home town, the whole team wore pink arm bands to signify their support for our fight against cancer and they gave Katie a giant check for $300, one pink rose from each person on the team, and a soccer ball signed by every person on the team. It was a heart warming event and we are very happy and thankful to the team and the parents who support them. We are especially proud of Eric's efforts to organize this fund raiser and make his little cousin Katie feel so very special. Thank you.

The Last Infusion and a Farm Update

Katie had her last infusion of chemotherapy Friday. She is still taking chemotherapy drugs in pill form for another 16 days, but she will not have to go back to Fletcher Allen for any more chemo through her port. She is feeling good and her blood counts are up. With any luck, she will finish out these next 16 days strong.

Back on the farm, we added another calf, 36 more chickens and 3 turkeys. Katie's favorite farm critters right now are the chicks. She really loves them when they are young, cute, and fuzzy.

Relay for Life Coming Up Fast

We are participating in the Relay for Life again this year. The relay will take place on Saturday, June 26th this year at North Country Union High School. Katie and Josh both plan on attending and staying through the night. Last year, Katie lasted late into the night and walked lap after lap despite having had a heavy dose of chemotherapy that included intravenous Vincristine and intrathecal Methotrexate just two days before the event. This year, she will get her very last dose of chemotherapy eighteen days before the event. This will be her very first Relay for Life as a post treatment survivor.

If you want to join our team or donate to our cause, please visit http://main.acsevents.org/site/TR/RelayForLife/RFLFY10NE?team_id=664088&pg=team&fr_id=23452

A Light at the End of the Tunnel

Katie is at Fletcher Allen today getting her last Lumbar Puncture with Methotrexate. At today's appointment her doctors finally gave us a firm end date. Baring any more unforeseen occurrences, Katie's last dose of chemotherapy will be on June 8th 2010.

47 Days To Go!!!

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.

Back on Her Feet

Katie is back on her feet and walking around on her sprained ankle. She is limping a little bit, and doesn't dare to run or jump yet, but she is successfully walking all day long at school. She is very proud of herself.

Healing

Katie's sprained ankle is healing slowly. The bruise, which was magnificent, is now reduced to just a purple area about 4 inches long and an inch thick along the side of her foot below her ankle. She still can't walk on it or even bear much weight on it, but she has stopped wearing the air cast and is now back to wearing her sneakers. With some prompting, Katie can use her leg enough to balance herself on two legs although the leg with the sprained ankle is just barely touching the ground.

She surprised us all this morning by trying to and succeeding at a very short crab walk in which she successfully bore at least some of her body weight on the injured ankle. She proudly exclaimed that it didn't even hurt. Hopefully for her, the worst of this injury is behind her and things will just keep getting easier from here.

And Now for a Sprained Ankle

Katie recovered well from her Thrush. The Fluconozole cleared it right up. She was feeling good, eating well and getting lots of sleep in the days leading up to her last dose. So, we planned a sledding trip for the upcoming weekend. It was a disaster.

The trip started early Saturday morning. I wanted to get everyone on the hill early while the snow was still icy and fast. Temperatures have been climbing into the 40's during the day lately, and after a few hours of sunlight, the snow turns into slush. But first thing in the morning, it is compact and icy enough to walk on. I chauffeured the family to a hill just a few miles from the house where Amy would start at the top of the hill with the kids and I would wait for them at the bottom. The problem turned out to be that the snow was exactly as fast as I had hoped it would be.

Katie eagerly volunteered to go first. She hopped into her sled and headed for the bottom. Before long she was a little rocket flying down the hill and we could already see the potential for an accident as her sled began veering off the planned course and towards trees and bushes 50 feet off to the side. She was too far up the hill for me to get to in time and she was already too far down the hill for her mother to get to her in time. As I ran up the hill, I hollered to her to turn or roll out of the sled. She sat frozen, not knowing how to prevent the imminent crash and not daring to roll out of the fast moving sled.

As I watched, her sled plowed over the first few small bushes protruding from the snow and started to turn back in the right direction. For just a second, I hoped that she would actually make it through without crashing. Then her sled hit one bush too many end for end, ejecting Katie and sending her through the air for another three or four feet before she touched the ground again. When she hit the ground, she hit standing up and drove one foot into the compact, frozen snow. The rest of her body still had enough momentum to keep tumbling even as that foot tried to stay lodged in the snow. It eventually came loose and she tumbled a couple more times and slid to a stop on her face, already crying out in pain.

I thought she had broken her leg for sure, especially considering how easily she had broken her foot last summer. I quickly established that the only thing that hurt was her leg, and then I carefully took her boot off. Amy had arrived by now and we looked over Katie's leg carefully expecting to see very visible signs of a break. There were none, but Katie was certainly in pain. We took her back to the house to keep an eye on her and wait for the swelling. We didn't wait long. Within fifteen minutes we were on the way to the hospital, Katie sitting in her car seat with her leg carefully propped up on a box and using my coat for padding. To our great surprise, the x-ray showed no broken bones and Katie was sent home with an air cast to provide some support and a little protection.

This all happened five days ago, and Katie still can not bear weight on that foot. She has been at school every day this week, but when it comes time to move from one room to the next, her teacher carries her. When she just has to move around inside the classroom, she crawls. We still have the walker that she was given back when her neuropathy was so bad that she couldn't walk at all, but she refuses to use it. She says that hopping behind the walker hurts and she would rather crawl.

Her spirits are good and she is adapting well to her new limitations, but I sure do wish she didn't have to adapt. Whenever she tells the story, she is quick to point out that the whole trip was her "Daddy's idea" so her sprained ankle is "Daddy's fault". I have to agree. Next winter, we will choose a smaller hill.

Definitely Thrush

Katie went to her doctor again today to get this latest issue diagnosed and it is Thrush. Most of her tongue is now white too, and she is still in a lot of pain whenever she tries to eat, but her doctor prescribed a new med, and we have already seen some results. With any luck, we caught this early enough that it won't spread.

Tomorrow, Katie has to travel back to Fletcher Allen for a follow-up, a blood test, and possibly more chemo depending on the results of the blood test.

A New Kind of Mouth Sore

We don't yet know what kind of sores these are on Katie's tongue and on the roof of her mouth, but they hurt and they developed very shortly after leaving the hospital so no doctors have seen them yet. It looks like Thrush to us, but since we have never encountered it before, we can't be sure. You can click each image for a larger, close-up version. I'll post an update when we find out what this is.

Our Plans Changed in an Instant

In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.

Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.

Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.

Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.

Infection Free

Katie's ear infections are officially gone. Apparently the Augmentin did what it was supposed to do and the pain that Katie was complaining about for the last couple of days before going back to the doctor for a follow-up was caused by the fluid that is still in her ears. The doctor prescribed a nasal spray to help drain Katie's Eustachian tubes and sent us on our way. To help keep the ear infections at bay, Katie is also taking 2400mg of Xylitol each day. Xylitol is a natural sugar-alcohol that comes in the form of gum, syrup, or candy and our doctor recommended giving it a try. We bought the candy from our local health food store and Katie has no problem gobbling it down. Although I just read that Xylitol needs be given in a dose of at least 8400mg to be effective. We will probably increase her special candy allowance now that she is infection free again and try to keep her that way.

School vacation starts this week, and Katie is looking forward to both down time and time for play. She took a 3 hour nap this afternoon and only woke up because I woke her up. I wasn't interested in her staying awake all night after sleeping too long in the middle of the day. Tomorrow, if the weather cooperates, the whole family is going skiing and riding at Burke Mountain. Hooray for vacation!

On The Road to Recovery

Katie hasn't had any follow-up appointments since her last visit to the hospital, but things appear to be getting better. She is no longer suffering from fevers at night, she claims that her ears are not bothering her, and the color is returning to her cheeks. We put her back in school this week, and although the first and second days back were rough with school directly followed by a nap, she finished out the week strong. She even got out to play on her snowshoes today with her other preschool pals and she appears no worse for her experience. It looks like she may be declared healthy at her follow-up visit next week.

Now, how long can we all stay healthy?

Update

Katie's fever dropped a little lower over night, to hover around 101. In the morning I spoke with her doctors and arranged for a follow-up. At her follow-up The doctor and I spoke about Katie's recurrent ear infections and decided to try Augmentin, and augmented dose of amoxicillin designed to stay in her system longer to kill off more bacteria.

From the doctor's office, we were transfered to the hospital for another blood count, blood culture, and another dose of Ceftriaxone. At the hospital we were told that the previous night's x-rays had just been read and that the doctor thought he saw a shadow of pneumonia. New x-rays were taken, and it was confirmed that there indeed was some pneumonia in her lungs. However, the Augmentin and the Ceftriaxone both fight pneumonia as well as ear infections so no change in her medications are necessary.

Port access was a breeze again, and Katie's blood counts were the pleasant surprise of the day. Her white blood cells climbed back up to 2.6 and her ANC climbed up over 1200. Her hemoglobin was still low (I don't have the number handy) and that concerns us since fever tends to kill off extra hemoglobin.

During our stay at the hospital, Katie's temperature began to rise again. She was given some Tylenol to help keep her comfortable and although she felt better, it certainly didn't keep her fever down. Katie was discharged with a fever of 103.7 and we headed home. By 9pm, her fever had risen to 104.9. Happily, that was its highest point. Her fever slowly dropped over night until it was once again hovering around 100 this morning.

She has spent most of today flopping back and forth between feeling sick and vomiting, and then feeling great and chattering and playing as if nothing were wrong. As I right this now, her temperature has started to climb a little, and she is ready for bed. I hope she gets a good night's sleep tonight so that her body can begin to recover from this round of illness.

Emergency Room Update

The doctor just came in to tell us what Katie's blood count is. Its low. Her white blood count is just 1.1 and her absolute neutrophil count is only 770. Her numbers have suffered a precipitous drop over the last four days. Considering an ANC of 500 will put her back in the hospital for days, we are a little worried about this. Also, given the number of illnesses floating around our house lately, a dropping ANC does not inspire hope of a healthy near future.

I'm also going to write down her basic number here so that we don't forget them...
ANC 770
WBC 1.1
HemoGlobin 8.1

So Much for Getting Well

That cough that we mentioned in our last post has progressed in to something that sounds croupy, the ear infections never did go away with that last dose of Amoxicillin,  and we are back in the hospital. This time, we are at North Country Hospital with a fever of 103.2. Katie is feeling awful, but dealing with it well as usual.

Port access went very smoothly. North Country doesn't stock the types of access needles that Fletcher Allen uses with Katie's port so access has historically been difficult here. However, at our last visit to Fletcher Allen we were given several access needles to keep with us in case Katie needed to have her port accessed again at North Country. The nurse used one of the Fletcher Allen needles today and accessed Katie's port with great ease. It made a real difference.

The plan for right now at least is to wait for the results of a blood count, wait for the Ceftriaxone to finishing dripping through her IV, get some medication for her recurrent ear infections and go back home. Hopefully, this will be just another routine visit to the hospital.

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.