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 Long Night

Katie decided that sleep was not as important as food last night, and she kept us up most of the night asking for and then demanding food every hour on the hour. I hate steroids. The steroids make her hungry around the clock, and now that she is starting to feel better and have more energy more of the time, she wants to act on that hunger more and more. My little girls is plumping up faster than a Butterball turkey. Her latest craving is for mozzarella cheese, and she can't get enough of it. She is capable of eating a pound in one day and asking for more.

Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*

Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.

Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.

As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.

The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.

I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.

Tuesday Night Update

It has been confirmed. Katie will be coming home Wednesday. She had a good, although slightly less energetic day today and is looking forward to coming back home. Her blood counts are still dropping as they should be, but that means she is getting closer and closer to that point where no visitors will be allowed.

Her PICC line was redressed again today because a nurse found some blood under some of the bandages so they had to take it all off just to make sure that everything was OK. During the redressing, the IV nurse was concerned that the PICC line seemed to be slipping out of Katie's arm so she ordered x-rays of Katie's chest to make sure that the line was still in a main artery. The only problem was that she forgot to mention that to Amy so Amy was a bit alarmed when a team of new nurses descended on her and Katie to take them away to x-ray. The nurses only new that they were to pick them up for unplanned chest x-rays, but not why the x-rays were ordered. Happily, her PICC line was still in place and working perfectly. Had it not been alright, she would not be coming home tomorrow.

When Katie gets home, I would expect that things will get less interesting. I will most likely be posting updates to the blog only once each day instead of twice unless something unexpected happens. Whenever she goes to Fletcher Allen for testing or treatment I will be sure to post the results here. Thank you to everyone who has taken the time to read the blog, and thank you to everyone for all of the offers of help and support. It is greatly appreciated.

On a related note, Lake Region Deca is hosting a blood drive on Thursday at LR and they are dedicating the drive to Katie. I will definitely be donating. We are going to be using so much blood over the course of the upcoming months just to keep Katie healthy that it is the least I can do.

Amy and I are handling the situation well at this time, now that we are over the initial shock. Josh is handling it very well on the outside, but I wonder what is going on on the inside. He is sillier and more emotional than usual and he is having a hard time listening; but he never talks about his sister unless asked directly. We have talked to him about the cancer in his sister's body and how that affects her and what doctors are doing to get rid of it. I think he is struggling to process all of that information and sort out his feelings. Right now, he needs lots of love and support, but also guidance, rules and routines. I would like to keep him near us right now and give him lots of family time, but as he becomes accustomed to his sister's new limitations I would like to give him opportunities to get out and spend some time with friends and family, just playing and be five. I will keep you updated on how he is doing over time.

Tuesday Morning Update

I am home now and back at work. I just called Amy for an update on Katie's condition and she had nothing but good news. Katie has been officially cleared to come home Wednesday. From that point forward, she will be taking a trip to Fletcher Allen every Tuesday and Friday for additional treatments, blood transfusions, and bone marrow extractions. To help expedite the process, the VNA will be coming to the house on Mondays and Thursdays to draw blood from Katie so that it can be forwarded to Fletcher Allen for testing.

Katie is currently covered with petechia indicating that her platelet count is low, but she is otherwise fine. Her IV has been removed, although the PICC line remains in for treatments when she returns to Fletcher Allen. She is still eating and drinking well on her own. She even took her worst tasting medication without problem. The doctors were a little worried that she wouldn't take it, and it has to be taken by mouth. She continues to be an amazing patient.

Friday Update

Today is the first day of Katie's official chemotherapy treatment. She actually got her first dose of chemotherapy yesterday during the bone marrow extraction, but that was a generic treatment that would have a positive affect on whatever form of leukemia she had. The new treatments beginning today are designed specifically to attack the form of leukemia that was found in her bone marrow.

Katie hasn't had any real side effects from yesterday's treatment. She has only experienced a small tummy ache that has diminished her desire to eat a little bit, but we have been assured that it is only temporary. A side effect of another one of the drugs she will be getting is that she will end up with a serious case of the munchies.

She is becoming accustomed to all the doctors and nurses that keep visiting, testing, and medicating her. Her IV was replace with a PICC line yesterday during the marrow extraction. The PICC line is more durable and more useful than the IV and it allows blood to be drawn without using any more needles. She was actually able to sleep through her blood withdrawal this morning.

The PICC line is also placed in her upper arm instead of in the veins at her wrist, so she has a lot greater freedom of movement. She has been playing, crawling, and even trying to jump in her bed.

She has been taking her medicine as if it were candy. Anything that needs to be taken by mouth goes in effortlessly, and usually in a mixture of drugs/melted popcicle. She likes the red ones.
One of the doctors told us this morning that they are expecting Katie to respond well to the chemotherapy and have scheduled her next bone marrow extraction, which is next Friday, as an out-patient treatment. We like the atmosphere here at the Vermont Children's Hospital, but it would be nice to take her back home too. So, we are crossing our fingers.

We have also been told that she is expected to get sicker over the next couple of days as her body learns how to deal with all of the different chemicals and all of the dead leukemia cells. The chemotherapy should kill off one to one and one-half pounds of leukemia cells in the next 48 hours. Given the fact that she only weighs 24 pounds, a pound of dead cells is a significant portion of her overall body weight.

Katie also had her first of many transfusions last night. The idea of a transfusion, or even of needing one is frightening. However, after watching her get the transfusion last night and seeing how much more life she had after the fact, I am thrilled. She went from a lethargic, pale, child to an energetic, animated bundle of wiggles after about twenty minutes of transfusion. The whole process took about three hours and she was asleep by the end of the transfusion.

Thank you to everyone who is already pitching in and helping out. A special thanks goes out to Robin Kay (Nana) for taking care of Katie's brother, Josh; and to my parents for taking care of the dog; and to Gerry and Cindy for taking care of the house; and to everyone else who is doing what can be done to make this difficult time easier. Thank you.