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.

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.

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.

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.

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...

The Struggle Continues

At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.

Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.

Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.

Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.

I Spoke To Soon

Earlier today I posted an April update in which I said everything was going well. As luck would have it, we are now in North Country Hospital because Katie is running a fever. It is 11pm, and we have been here since about 8:30. Her port has been accessed (first time being successful here) and blood has been drawn. We are still waiting for lab results to come back before they start flowing antibiotics. Her temperature at home peeked at 101.7 with no other indications that she wasn't feeling well. She is tired. She had a long day playing with Josh and Jack outside in the sun. But, because we are at the hospital, she is not interested in sleep. Antibiotics usually flow for about an hour, so it looks like it's going to be a late night. On the bright side, her ANC was 3800 as of Thursday. With numbers that high, Katie won't need to be admitted to the hospital. She will be treated and sent home.

Another Monthly Visit Come and Gone

Katie had to go back to Fletcher Allen for her monthly checkup and dose of Vincristine Thursday. Things went pretty well. Her appointment wasn't until noon, so we had plenty of time to get there and no reason to rush. It wasn't a hungry day for her so we could stop and get some snacks on the way into Burlington which always makes her happy. She stayed happy even as we walked into the clinic. She even lead the way to the infusion bay, running in front of me, laughing and squealing, telling everyone who would listen that I was chasing her with the stroller. She ran right into the infusion bay and that's when her enthusiasm ran out. She suddenly didn't want to be there and didn't want anyone accessing her port. But everything went so smoothly that she was still complaining about not wanting anyone to touch her port when the medication was already in and her port was already deaccessed.  It was a nice, quick treatment. After that, we picked up Grandma Kathy and headed over to the Olive Garden for lunch. Trips that go as smoothly as this one just did go a long way toward making the next trip seem not quite so bad. Granted, the Vincristine did end up making her vomit later that night, but that was to be expected. She had a pretty decent day today and is sleeping peacefully right now.

Home Again Sort Of...

Katie and I are out of the hospital again and back at Grandpa Art's and Grandma Kathy's. Her ANC was up again today. It climbed to 160 which is encouraging. However, her other blood cell counts all dropped a little. Red blood, white blood, and platelets are all down just a little. If they continue to drop at the same rate, Katie will need a transfusion on Friday.

I tried to get the doctors to take Katie off of her IV and all antibiotics last night so that we could see how she handled the sudden change while we were still in the hospital. But I couldn't get everyone to agree with my way of thinking. They did unhook the IV, but they kept up two more doses of antibiotics. So, since this was going to be the first night without antibiotics again and we were going to be away from the hospital again, I asked them to leave Katie's port accessed so that if we have to come in in the middle of the night there will be far less trauma. The doctors agreed so we are at her grandparent's house and she is still accessed.

If all goes well tonight and she doesn't get another fever, we will go back in to Fletcher Allen tomorrow to have one more blood sample drawn through her port before she is deaccessed. Then with her port deaccessed, she will be from to go back home to Barton for a little while at least. If her blood counts stabilize, she won't even need to go back to Fletcher Allen for a transfusion on Friday.

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.

Friday - Saturday

I forgot to post to the blog last night. It was late when Katie and I got back from Burlington, and then we called Amy just as we were coming into Newport and asked her to meet us at a restaurant for dinner. By the time we got home from dinner, it was after 9 and I fell asleep putting Katie to bed. She had a good day Friday. We had a pleasant ride to Fletcher Allen and she was great for the doctors and nurses the whole time we were there except for when it was time to access her port. For some reason port access has become a traumatic experience for her and she fault valiantly to keep everyone away from her port. However, after she was accessed, she went right back to being cooperative and pleasant. Deaccessing her port was considerably easier despite the fact that it is more painful. She cried a little and she didn't really struggle.
While we were at the hospital, she complained of not feeling good. That was no surprise to me since she hadn't been allowed to eat since midnight the night before and I wasn't able to give her any nausea medication when she woke up that morning. But, blood test showed that she had other reasons to feel bad. After her forced 12 hour fast, her blood sugar levels were very low, so low in fact that the doctors have decided that she shouldn't fast like that again and the next time they need her to fast they are going to bring her into the hospital early and hook her up to an IV for a few hours before her procedure.

Today, Saturday, was another pretty good day for her. She stayed around the house all day except for a brief trip out for Josh's T-ball game but she felt good and she played a lot. She even got outside to play in the sand box and ride her tricycle that we bought her a couple of weeks ago. She was tired tonight when I put her to bed and it didn't take her long to fall asleep. Now that both kids are in bed, I guess it's time for me to start working. I have some programming to do.

More from Monday

We are home and the kids are in bed. We got home just shy of 14 hours after we left for the day and the kids are tired. For that matter, so are the parents. Josh went with us today for the first time since coming to visit us in the hospital during our first stay. He got to watch as his sister had her port cleaned and accessed, as she was actually given anesthesia and put to sleep, and as she received her various chemotherapy infusions. He also got to while away the hours with us, just hanging out in the hospital room and the infusion bay. When we asked what his thoughts of the day were, he summed it up with one word - boring. He was sorry that his sister had to go through that, he definatley didn't want to have to go through that, but he also didn't want to have to stick around and wait for it all to happen either. I think he has a new appreciation for why we keep sending him to school even when we have to turn around and head to Burlington after dropping him off.

In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.

As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.

Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.

Home Again, Home Again, Jiggety Jig

I don't feel much like dancing a jig, actually, but I am very happy to be home. This was a long, hard day, but we are safe and sound in our own little casa. (My Spanish is improving, too!) Rick has pictures that document our adventure (only Rick would photograph this terrible day!), and he has promised to post some, so I will be quick. I simply wanted to tell you what a fierce and powerful young woman Miss Katie is. She spent most of the morning playing possum. It's an odd strategy, but also effective. When she wasn't ignoring the adults who intended her harm, she was screeching at anyone foolish enough to get close. While this was not pleasant, it did renew my faith in Katie; she is a survivor.

We don't have any updates yet. We won't have test results until Monday or Tuesday. The surgery went well, though, and Katie now has a port in her chest through which doctors will administer medications--no more PICC line. Further good news: Barring disaster, we will not have to travel to Burlington until next Thursday. I'm so glad Katie wil have some time to recuperate.

Thanks to Auntie Heather, who brought us lunch. Thanks to Grandma Kathy and to Grandpa Heart, who kept us company. Thanks to generous souls who raised the money we spent trying to feed the insatiable Katie, who ate eleven (!!!) chicken nuggets on the way home. We look forward to sharing more good news with all of you soon.

A Hungry Day Again

Today we are off to Fletcher Allen for all sorts of procedures. Several of them require Katie to be under anesthetic which means no food. So here is a picture of Katie having one of her last meals. That slice of pizza in her hand is slice number three, and that is her second helping of Tater Tots, chicken nuggets and fish sticks sitting in front of her.

Katie is already up and she has had her sponge bath. We are now getting ready to shuttle Josh off to school and head to Burlington. We don't expect to be back very early today if at all today so the blog posts might be late or even tomorrow. Wish us luck with this port placement surgery.

Quick Update

Here's the plan, folks:

Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!

Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.

We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!

Happy Valentine's Day to my little family and to yours.