A Day in the Life

Me?  Well, typically it's like this:

I get up at 6:30 (I know--sleeping in!) and get ready for the day.  At 6:45 I go downstairs and wake E&E for school.  If Alexa spent the night at the hospital either I call her or she calls me to fill me in on how it went.  Then I go upstairs and prep for breakfast, then back down and wake Ezra up again, then up and take vitamins, then down and wake Ezra, then up...you get the idea.  At 7:15 or so we read a little scripture, eat, and leave for school around 7:30.  First Ez gets delivered to Highland High School and then Eden to Clayton Middle School (less than a mile apart).  After that I usually drive directly to the hospital.

At the hospital--Kait is usually asleep--I check in with her nurse, email, read, and FB.  Kaitlyn gets in the habit on and off of staying up all night and sleeping away the day.  There are a couple of reasons for this--1) nighttime here is daytime in Saipan, so that's the best time to chat with friends, etc. and 2) sometimes--when she's not feeling well or has just had all the hospital she can take--she doesn't want to talk to any of the medical personnel, especially doctors. Sleeping all day is probably the most effective way to accomplish this. Anyway, if I'm being particularly productive I study or write a blog post.  This is a good time for me to be at the hospital because the oncology team (attending doc, fellow doc, resident doc, pharmacist, social worker, dietician, child life specialist, etc.), does rounds in the mornings and when I'm there they include me in the report which gives the most accurate picture of Kaitlyn's problems and progress and what they propose to do as far as any treatment changes, etc.  They're great at listening to my concerns and suggestions and answering my questions.  In fact, I would say that they listen as closely to me and give what I say as much importance as they do her attending physician who is the head of the team.  At least they make me think they do.

At 2:30 I leave to pick up the kids.  Usually by that time Kait has been awake for 2 or 3 hours.  I take the kids home, run errands like grocery shopping, laundry, etc., and arrange something for dinner.  Around 5 or 6 I go back to the hospital until about 8:30 or 9.  On most nights Alexa comes to the hospital after her 6:00 to 10 pm class to spend the night, but other days I stay overnight in which case I leave at 6 am to go home and run the schedule.  Thankfully we only live about a 12-15 min drive from the hospital.

People have also asked me about how Casey is doing.  I think he deserves a separate post all his own, so that'll be next time.

By the way--Kaitlyn's counts are on the rise!  ETA at home is within the next few days.

Here's the Plan

There hasn't been much new to say this week.  Thankfully Kaitlyn has remained fever-free and there's been quick improvement on her mucositis--a mild case compared to last time--although she has had another bout of c-difficile.  The c-diff has caused nausea and considerable pain, but it is being treated and seems to be improving as well.  Other than that she has had the general crummy feeling that goes along with having no blood cell production.  She's had a couple of platelet transfusions and red blood tranfusions over the course of the week with no complications to report.  Leukemia treatment is transfusion-intensive so it's par for the course.  Ho-hum.  (Boy!  What planet have I landed on?!) 

I get asked a lot about how Eden and Ezra are doing with making the adjustment of moving to the States and starting in new schools, etc.  They're doing great!  They both like their schools very much.  Ezra has had the opportunity to have classes in welding and small engine repair as well as the regular  biology, math, etc.  He's been impressed with the money-making potential of knowing how to fix small engines....hmmmm.  He's going to be playing some basketball with the church team in our ward.

Eden took a Fridays-after-school cross country ski class this semester and also has found that one of her favorite regular classes is theater.  Her school is considered the best middle school in the district and she seems to have a good group of friends there. Her young women's group at church is small and they're all older than her (not a lot older--they're mostly freshmen and sophomores in high school), but they've been great in including her in sleepovers, birthday parties, etc.  

Our plan right now is to continue here through the first semester of school next year which will end the middle of January.  When I told Ezra and Eden they would be in their schools through next fall they both seemed happy.  Kaitlyn will not be 18 until October and that along with the fact that we've rented the house for a year and just feeling like I need to stay until I feel comfortable leaving all played into the plan.  I'm glad she will be going to school here in Salt Lake where her doctor is and her medical history will be known and she knows them.

And then, at least how it looks right now, it's back to Saipan. :)

The Longest 21 Days

Kaitlyn doesn't feel well.  For the past day and a half she has had increasing nausea.  Yesterday she felt sick pretty much all day and it was much worse whenever she had to get up for any reason.  Her doctor just checked in on her and she asked him to stop asking her questions--I know when I feel very sick to my stomach it takes all my concentration just to deal with that so I suppose that's how she must be feeling.  He said that she's really far enough out from her last chemo treatment that that would not be what's causing this.  She's had a week of feeling pretty good and actually went for most of that time with no nausea at all, so I'm sure he's right about that.  Right now she's pretty much staying curled up in bed trying to sleep through it.  He said we should see her counts start to bump in about 10 days.  Of course, since with not having an immune system this is the most dangerous time, the 3 weeks from the end of chemo to her cell counts coming up always seems to take forever!

During the night she spiked a fever,  but it came down to the normal range on it's own only to go back up a little this morning then back down again as well.  They started an antibiotic i.v. just in case there is an infection brewing, but as of right now nobody seems to know.  They took blood cultures and sent them off to the lab, but it takes about 48 hours to get a result.

There is some good news:  She isn't having any pain.  All of her labs look good--in fact her red cell count is in a normal range which hasn't been the case at this point in the prior rounds, but is definitely a positive.  A nurse and a resident both told me at different times this morning that the mucositis in her mouth was looking much better (how that works when you have no infection fighting or repair cells to do that work in your body is a mystery to me and probably to them as well!)
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Just a Note:

Dr. Barnette told me some interesting things yesterday about the improvements over the last 8-10 years with leukemia treatment and success (i.e., survival).  He said that they haven't had a new drug to treat ALL (the other type of leukemia) since the 70's, yet the survival rate on that type has risen to about 95%!  That's probably better than if you get the flu!  The difference has been in the pattern and dosages of administering the drugs.  He also said that better and wider-range of support drugs alone (anti-nausea, pain meds, antibiotics, etc.) brought the survival rate up 10+% from what it used to be.  With AML (Kaitlyn's type of leukemia) just keeping them in the hospital instead of discharging them like they used to during the chemo recovery phase has made a huge difference.  The better understanding and procedures for bone marrow transplants also has had a great influence on successful outcomes.

Although I look forward to the day when these harsh treatments are a thing of the past, I am so grateful to live in a time where they are available and the research and work that produces and improves on them is valued.

God continues to impart his mercy, grace, and wisdom to us--who can deny it?

Back to Zero

Kaitlyn's counts zeroed out today but she's still feeling relatively good.  Her hemoglobin was low so she got two units of blood, but no fevers and no infections.

She's had a productive day--making Valentine's Day cards for the other patients on the floor, moving around, eating a little.  When I came in tonight and she had glitter on her face, head, and all over her blanket--hahaha!  It looked like fairies had been here!

She even got one of her best friend nurses and favorite tech tonight.

Now if we can just maintain this status quo for 3 more weeks....

Here We Go Again

 Kaitlyn had 2 weeks out of the hospital again--not quite as pleasant as the 2 weeks after her first round.  She was still suffering some of the effects of infections that she contracted during round 2 and as a result had some nausea issues and wasn't able to eat much.  The last 4 days at home, however, she was pretty much back to her old self which is always wonderful to see and the best medicine for Mom and Dad : )  While she was home we had a couple of family dinners (the SLC contingent of the family anyway), went to Les Miserables, lots of D.I. shopping (the true test of immune system recovery!), and got to spend time with little Killian, Levi and Raquel's baby that was born while Kait was in the hospital.

Round 3 began on Monday.  We had to be at the hospital around 10:30.  All was well until we stepped into the elevator and Kaitlyn felt sick--association I think.  The nurse practitioner told me to make sure I give her anti-nausea meds before hand the next time.  I wish I had thought of that.  Things settled down as she got moved back in, but she ended up being pretty sick during her first chemo on Monday evening.  They increased the anti-nausea drugs and last night was much better.  Only 5 days of chemo this time--yay!  By this weekend it will be done.  The pharmacist told me yesterday that the chemo drugs are pretty much out of the body by 3 days after the last infusion.  Of course, by then her counts will be well on their way to zero which also makes her feel yucky....

So, she's on her way through round 3.  We are hoping and praying for a less eventful round than last time--remember, boring is good!  

Cards, letters, and Valentines are encouraged and welcomed!  Her address is 

Primary Children's Medical Center

c/o Kaitlyn Conner, Room 3067

100 North Medical Drive

Salt Lake City, UT 84113