It Is The Best of Times; It Is The Worst of Times

This will be the final post on this blog.  Updates for Kaitlyn now will appear on the fund raising website that we started to help defray the expenses of her upcoming bone marrow transplant.  If you feel you would like to help this is where you can make a donation that will go directly to helping pay for Kait's care/cure.  That site can be accessed here.   

On April 25th Kaitlyn was supposed to marry Connor Bridge in the Salt Lake Temple here in Utah.  On Tuesday, March 25th we found out that Kait had relapsed and the leukemia is back.  Kaitlyn and Connor decided to go ahead with their marriage, so they asked her doctor if her readmission to the hospital could be delayed for a couple of days.  On Wednesday, the 26th she went in for preliminary surgical procedures: a lumbar puncture, a bone marrow aspirate, and a central line put in her chest (her last treatment was done entirely with a PICC line in her arm).  As soon as the hospital procedures were done, they obtained temple recommends, got a marriage license, contacted his parents (who drove all night from Montana), and changed their appointment at the temple from April 25 to March 27.

The next day (March 27th), Kaitlyn and Connor had a beautiful temple wedding.  We had a family dinner at a nice restaurant and they spent their 1-night honeymoon at a local hotel.  It was a wonderful day!  Connor's brother and sister-in-law surprised him by driving all night from New Mexico to be at the wedding.  About 35 family members and close friends attended.  A day when everything felt happy!  It CAN be done without all the big deals and extras!  Yay!

I picked them up the next morning and she checked in at the hospital.  We can't thank everyone enough for their prayers, love, concern, and faith on our behalf.  We love you all!

Grateful--Truly Blessed and Duly Grateful

As I woke up this morning it occurred to me that I needed to add a couple of things to this blog--they're things I always want to remember.

When we moved to Salt Lake City--Kaitlyn and I arrived one year ago today--I needed to quickly make a home.  Eden and Ezra were coming at Christmas to stay for the year and Kait was due back in the hospital in a week's time which meant I was not going to be at the house much.  In addition to all of this we were keeping our house on Saipan, so whatever we needed to furnish would have to be bought.  My oldest daughter, who had agreed to live with us for the year so that there would be another adult in the house, was my "man on the ground" in SLC (we were still at UCLA medical center at the time).  She was able to find a house to rent starting in the middle of December which was 10 minutes from the hospital.  It also worked out for our landlady to rent the house fully furnished.  I mean fully!  Furniture, dishes, some linens, towels--fully furnished.  This was not a rental house; this was a house the owner lived in but because of a series of circumstances now had to rent out.  The fact that we were able to find a furnished house close to the hospital wasn't even the most amazing thing--the most amazing thing was that when we came to see the house after I arrived she had set up a nativity set in the dining room.  The nativity was exactly like the one my mother had used for years and had given me to use in my home many years ago.  I had lost my mother just before Kaitlyn was diagnosed and everything I had of her things were now at our home on Saipan.  When we walked into that room and saw that nativity, we cried.  And I knew we had found the right place.

Here's the other thing.  The ward (we call the local congregations "wards" in our church) nearest our house here in downtown Mormon-headquarters-of-the-world Salt Lake City didn't have any young people!  It had a lot of senior citizen housing within it's boundaries (areas of the LDS Church are divided into boundaries and that's the ward that you attend on Sundays), and then there were a few young married couples, mostly college students, and that was it.  No teenagers and I had two teenagers arriving in a couple of weeks.  So when they arrived we randomly chose a different ward a couple of miles away, closer to where they would be attending school.  Also attending this particular ward was the sister of one of our friends on Saipan ("I have a brother who lives on Saipan..."), and a man who had served his mission in the Micronesia Guam Mission back in the 90's.  But once again, meeting these people in our randomly chosen ward was not the most amazing thing.

The most amazing thing for me happened the day I was talking to one of the men in the ward after church.  His wife was a young doctor who was doing her rotation in the Hem-Onc unit during the time that Kaitlyn was there and we had talked several times.  On this day I was explaining to her husband that we had just returned from Kaitlyn's Make-a-Wish trip to Maine.  He casually mentioned that he thought his wife's trip to Italy was the first one they allowed out of the country after 9-11.  ???  I hesitated--she had been life-threateningly ill when she was younger?  So here in our little randomly chosen ward there was this young woman--now a doctor--who, at 17 years old (just like Kaitlyn) and a senior in high school (just like Kaitlyn), had been diagnosed with AML--acute myelogenous leukemia (just like Kaitlyn).  Wow.  And here she was.  Eleven years healthy.  After all the people during the last few months who had come up to me to relate their horror stories of loved ones with leukemia, here was this happy ending right in our little corner of the world!  I can't tell you how much I needed to hear it and again, I knew we were in the right place.

These are just a few examples from this past year of years of tender mercies that I have been given throughout my life.  These experiences remind me that God is always there with help and love and strength and peace.  When obstacles have been before me He has raised up people that have smoothed out the rough places and helped me through the hard times.  I know from holding my mother's hand as she slipped away just weeks before this journey began that those tender mercies are there regardless of the outcome.  God has always brought help and love and strength and peace--often in unexpected ways.

I am so grateful.

First Post-Treatment Clinic Visit with Lab Results

Dr. Barnette was happy to see Kaitlyn looking so great with a "big cheezy grin" on her face as he put it.  Her hair is growing thick now and her color is good.  She feels like her energy is good and he talked with her about her plans for the rest of the summer--Make-A-Wish is sending us to Maine for a couple of weeks in August--and for when school starts in September.  He was happy to hear about her visit to Saipan for graduation.

What about the labs?  Okay--I felt like everything was good.  Everything seemed to be going right.  Still, it was nerve-racking for me, so finally I asked. (Sheesh!  You would have thought that would be the first thing he would have addressed with a nervous mother sitting right there instead of shooting the breeze with the kid!)

Her labs are GREAT!  Her white blood cell count is still slightly low--3600 whereas normal range is 4500-13000--but considering 9 months ago her WBC was 185,000 I have no problem whatsoever with it being slightly low.  He said that many of his patients take 6-12 months to return normal counts after treatment, but at just 3 months out almost all of Kaitlyn's counts have already completely recovered and even the WBC is very, very close.

So, no more clinic until sometime in September.  The doctor said to just call for an appointment sometime after we get back from Maine and to have a great trip.  We plan on it! :)

Two Months Out-- All is Well!

Final Discharge

Awww--Ain't That Sweet?

We have neutrophils!  ANC this morning is .2 and white blood cells are .3!!  It's beginning to look a lot like an immune system!  :)

Awww--here's a little 'phil--isn't it cute?

On top of that Kaitlyn's shingles are resolving nicely, her kidney function indicators are back down to normal,  and she's eating well and looking good!  If her counts are up again tomorrow--she's outta there!

Expect the Unexpected

Darn.  I wasn't expecting this to be the next post.  I was expecting to say that we're done, but that was before shingles.  And Acyclovir.

Acyclovir is an anti-viral medicine that the doctors started Kaitlyn on as soon as her shingles were diagnosed.  Viruses pretty much have to run their course, but there are some anti-virals that can shorten them and lessen the intensity which is especially important in immuno-compromised patients like Kaitlyn.  Acyclovir works great!  Her shingles were not painful or itchy and they were drying up quickly.  Yay!

But last Saturday Kait started having some pain and other issues. On Monday morning she was continuing to feel miserable and her labs (they draw them every day now looking for a bump in white cell counts) showed an irregularly high level in her creatinine which is an indicator of kidney function, so she was wheeled down to ultrasound.  Sure enough when the results came back they found that her kidneys were swollen and inflamed ("insulted" they said).  A nephrologist came to consult on the issue and guess what "insulted" Kaitlyn's kidneys--Acyclovir!  Sigh.

The good news is it's an easy fix--stop the Acyclovir.  The other good news is that her counts haven't "bumped" yet, so all of this hasn't really delayed anything.  The bad news is that since her white cell counts haven't bumped it's risky to stop the Acyclovir.

Where oh where are you White Blood Cells?

A Bump in the Road

Shingles.

Bone Marrow 101--uh...make that 91

Big week!  Daddy comes tomorrow, Mallory and the grandkids on Wednesday.  The question of the week though is when will Kaitlyn's blood cells bump up?

Just to review, once a chemo-interrupted bone marrow starts producing again it generally goes white blood cells first, red blood cells next, and finally platelets.

This morning's labs show a small increase in Kaitlyn's red blood cells which probably means that the white blood cells are also in production, but are racing around repairing chemo damage in which they must give their lives in the line of duty so they don't show up in the lab results yet.

The point is:  Kaitlyn's bone marrow has started producing blood cells again!  We are down to the last few DAYS!  Woohoo!

The State of Kait II

 The recovery part of this round has been relatively smooth so far although within the last 48 hours Kaitlyn has developed some type of inflammation in her mouth--not mucositis although she does have a slight case of that as well.  At first we thought it was a wisdom tooth trying to break through, but the dental doc says no it isn't.  Kaitlyn told me that the doctor said it was interesting.  I prefer--you guessed it--borrrring. Yawn.  Hopefully it will turn out to be just that.

Meanwhile, I think we may be down to the last week of hospital stays!  I'm estimating that Kait's counts should come up within the next 7-8 days.  I really hope I'm right because she is anxious to be done with hospitals and isolation and handfuls of pills morning and night and all the other lovely things that go along with AML treatment and get on with life.

It's Orange Feather Boa Day!

Kaitlyn's last chemo at 5:00 a.m. came and went quietly -- but in my heart I was cheering that the infusions are finally over.  I figured out this morning that over the span of these last 5 months Kaitlyn has had 63 doses of various types of chemo meds which have caused:

nausea and vomiting,
mucositis,
c-difficile,
all of her hair to fall out (eyelashes, brows, etc.),
her nails to die and break off,
the skin to peel off her hands and feet,
the lining to peel off the inside of her mouth,
depression,
loss of concentration,
insomnia,
numerous pains and high fevers,
a loss of appetite which resulted in treatment-induced anorexia,
severe colitis,
panic attacks,

AND--

the complete remission of Acute Myelogenous Leukemia.

Addendum:  Here's the link for those who don't know about the boa.

How's Casey?

He is doing about as well as you would expect a loving husband and father whose family had been put through these last 6 months to do.

Dad & Kaitlyn August 2008

I think Kaitlyn's road has been harder on Casey with all of us being so far away than it has on me.   He is a family man bereft of family who has been left to the worry of wondering what is happening to his "Sweetie-Peetie" (Kaitlyn) accompanied by the frustration of not being here to be with her during such a trying and stressful time.  He's been missing Eden and Ezra a lot as well and often asks me concerning how they're doing adjusting to being here, etc.  People here sometimes ask me how long Casey has been gone.  He isn't gone...we are the ones who are gone.

Early on in this journey we didn't know what to do with the house we have on Saipan or if would remain residents there or move or what.  Casey felt like we should hold on to the house at least for a while, so we have done that.  He works hard not only to provide the money to keep us here and maintain a house there, but to also keep my focus on Kaitlyn and Eden and Ezra and not on "Yikes!  How are we going to do this?!"

He gets a lot of support from the prayers of friends and family on Saipan as well as here in the States and other places (I'm thinking of you Lee!).  He also gets great strength and support from our family away from family on Guam--the Shoemakes--who also happen to be our business partners. Instead of the "all you can do is pray" attitude, we are more the "the most important thing you can do is pray!" kind of people, so faith and the support of everyone's prayers means everything to him.  To us.

The Many...uh...Faces?...of Kaitlyn

Last summer - au naturale:

Kaitlyn wants senior pictures, but she doesn't want to be bald in them so she ordered some wigs--red, black, blue, and pink.  Oh yay-uh!  And I thought she might want to look like herself in the pics--go figure.

Anyway--here are the wigs.  Let us know your favorite!

The Redhead

Short n' Sweet

Barbie

The Rocker

Leukemia is still in remission, blood counts are still great.  The fourth and final round of chemo & recovery starts tomorrow--stay tuned!

Home Again, Home Again Jiggedy-Jig!

Third round done.  Kaitlyn is home for...maybe 10 to 14 days.  A bone marrow biopsy and lumbar puncture are scheduled for the 11th and her doctor said that then they (he and she) would negotiate her final admission.  For now we will just concentrate on his prescription to forget hospitals and don't hang around any doctors. :)

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

Round 2 Biopsy Results Are In...

Kaitlyn triumphs again!  She had her bone marrow biopsy last Thursday and any sign of leukemia is negative.  YAY!!

As her doctor said, "She's doing great with the leukemia.  Now we just need to fix the things that we're doing to her."  Chemo is no picnic, but she's half way done.  Round 3 coming up.