Mucositis

Kaitlyn has been in a lot of pain this week which is mostly a result of having developed mucositis.  She didn't have much of any trouble with it in the last round, but she definitely has it now.

Mucositis is a side effect of the chemotherapy and inflames the lining anywhere along the digestive tract. While sometimes it involves mostly the mouth and throat it seems like for her it is affecting other places as well--she complains of hurting all over.  She uses a medicine they call "magic mouthwash" to treat the sores that have formed in her mouth and it also helps to numb the pain somewhat.

As a result of all of this it is terribly painful for Kaitlyn to talk or to eat anything so, as you can imagine, she's pretty miserable.

 Thank goodness for priesthood blessings!  Casey and Levi are at the hospital giving her a blessing right now.  God will see her (and us) through this.

Kaitlyn's Facebook Status--Christmas 2012

"It was when I woke up yesterday afternoon and it was snowing that I realized this was going to be a great Christmas. And yes, it was :) I'm one of the luckiest people I know. I got to spend it with almost my entire family. And the ones who weren't there were definitely there in spirit. Merry Christmas everyone!"

Just A Quick Update

Kaitlyn has had my laptop in the hospital with her since her computer died in L.A., so that's why I don't get to blog very often, but here's the scoop for today:

Kaitlyn says this round is rougher than last time--the increased nausea has continued.  The chemo cocktails finished on Friday (those that include multiple chemo drugs).  She has 2 more days of her one last drug--given every 12 hours--and she'll be done with the chemo for this round.  She's had a low fever today--probably caused by the chemo.  It can cause very high fevers, but so far this has been controlled with Tylenol and she hasn't felt too awful.

Kait called this morning and asked me to bring the Christmas presents that she bought on the 2-week hiatus she had between hospital stays.  Tomorrow's wrapping day--ugh.  My LEAST favorite thing about Christmas.

The best news of the day is that Casey and Eden and Ezra arrived this morning safe and sound.  Pretty tired (it's a 20-24 hour trip from Saipan), but well and happy to be on the ground!

Over the Hump

Yes, it's Halfway Through Chemo Day today.  Four days done, four more to go for this round.  Every round now starts with a lumbar puncture in which they draw a small amount of spinal fluid for testing followed by an intrathecal dose of chemo to prevent/treat any leukemia that may be present in the spinal fluid.   Kait's test, which was on Tuesday morning, came back looking "clear and clean" with any blood cells present falling within the range of normal.  I love that word!

Kaitlyn has had some nausea--chemo does that to you--so yesterday they increased her anti-nausea medications and that seems to have helped somewhat.  She still feels sick every time she has to get up for any reason.  She has also had a headache today.  Her appetite has decreased already and now everything smells bad to her --all compliments of the chemo.  

On the cheerier side, Kaitlyn and I decorated Christmas cookies today.  I made them at home and went to make the frosting before I remembered that I didn't have a mixer to beat it with.  I know, I know--but I went to the store and bought decorating frosting anyway.  It was bad enough that I had to mix up the cookies by hand, so I sure wasn't going to stand there and beat frosting all morning!  When I got there we put on "Home Alone" and frosted cookies.  She did eat a cookie or two and I was told that often patients like sweet things when everything else tastes bad.  

Only 2 more days before Casey, Ezra, and Eden arrive!  Woohoo!

We Interrupt Our Scheduled Program :)

I intended to post on Monday, but things got a little crrraaazy!

Kaitlyn is back in the hospital for her second round of chemo--Induction 2.  This time the treatment is 8 days instead of 10 which will bring us to the end of the chemo drugs and the beginning of the recovery period (pretty much the crummiest point as far as how she feels) on--that's right--Christmas Day.  I keep reminding myself (and her) that it's just one out of a lifetime of wonderful Christmases ahead.  It works for me, not so much for her. : )

There are a few things here at Primary Children's that were a nice change.  One is that they are not quite as strict with the no fresh fruits or veggies policy.  Another is that they allow Pet Therapy to come to the ICS (Immunocompromised Services) department.  That's where people bring pre-approved pets (cats and dogs only I think) into the patient rooms.  Kaitlyn really looked forward to it, but they did not allow it in L.A.  Her doctor here told us that mammals generally don't have conditions/diseases that are communicable to humans, so they feel it is a beneficial therapy.  It definitely is for Kait!  Oh, and one other difference is that there is an XBox 360 right in the room--how could I forget?!

So, we're just sitting in the hospital room on Monday night watching a movie and I start getting texts from Levi that they are at the hospital because Raquel is having contractions and they are trying to get them to stop (the due date was Jan. 22).  Hmmm...they were at the hospital for the same reason the night before!  Suddenly I get a text "We're having a baby!" and I take off for LDS Hospital which is only a couple of miles away.

Killian Cervantes Conner, Dec. 18, 2012

What a wonderful experience to be there for the birth of our grandson!  This is the second time that I was able to be at the birth of one of our grandchildren--I was there for Madie, too.  If there is any common happening in the world that never feels commonplace it's the birth of a child!  What a miracle!  Welcome, welcome baby Killian--we all love you so much!

Salt Lake City--At Last!

We're finally at home in Salt Lake City!  Exhibit A:

We have a house

And exhibit B:

With the house we inherited a cat

Proof positive that we now have a home here.

We had an appointment at Primary Children's today with Dr. Barnette, Kaitlyn's new doctor.  When he walked in the exam room he said, "At last!"  No kidding!  Dr. Barnette was a med student of Dr. Moore's (her UCLA doc) back in the 90's, so we had already had a good report on him and he is a very nice man.  On to the medical update:

Dr. Barnette explained that  AML patients are classified as low, intermediate, or high risk depending on the likelihood of relapse determined initially by certain chromosomal indicators.   The plan of treatment is determined largely by this classification.  Patients in the high risk group go on to bone marrow transplant with any compatible donor that can be found.  The low risk group's treatment involves four rounds of chemotherapy labelled Induction 1, Induction 2, Intensification 1, and Intensification 2.  The patients in the intermediate group--I got the impression that this was the largest percentage--are eventually assigned to one of the other groups based on their response to the chemo courses.  Because Kaitlyn's pathology was so good after the first round of chemo and her bone marrow biopsy, (they were unable to find any leukemic cells to an accuracy of .01%), she is now classified as low risk.  This does not completely rule out the possibility of a transplant in the future, but the chance of needing one has gone from likely to...much less likely.

I mentioned that I had been told that transplant recipients had the best chance of a complete cure.  Dr. Barnette said that they have a 1.5% better cure rate than the treatment for the low risk patients.  He also said that the chemo regimen for patients that go to transplant is much more intense and has the highest chance of permanent future complications resulting from the chemo itself.  

Meanwhile, Kaitlyn had a blood draw and ALL of her counts are now in normal range which means two things: 1-she is off all precautions other than to wash her hands frequently (something we all should do), and 2- she's ready to start Induction 2 which is scheduled for Monday.  The doctor said that with AML it is important to hit it hard right at the beginning, and although it would be nice to be able to let her stay out until Christmas he just wasn't comfortable with that.  In fact, most patients only get a week in between chemo rounds, but Kait will have 2 weeks.  After that it will be eight days of chemo and another month in the hospital waiting for her counts to come back up.

After all was said and done I did what any good mother would do, I got online and bought tickets to the IMAX showing of The Hobbit for tomorrow afternoon. Yup.  Right there in the doctor's office.

Friday Addendum

To answer to a few questions:
YES Kaitlyn will still need to go through the complete course of chemo treatments just in case there are any leukemia cells still hiding in the jungle.
YES there is still the likelihood of a bone marrow transplant--remember, that is the best chance for a complete cure.
NO the Angel Flight did not come through and now does not expect to have a pilot until possibly late next week.
YES we are still going to Salt Lake City tomorrow.  The medical recommendation is that Kaitlyn's next round of chemo should begin this next week and the best time for her to transfer is now, so rather than wait any longer Levi is flying in tomorrow morning and we are driving to SLC.  Tomorrow.

We are so thankful for God, His mercy and grace, and for your prayers in our behalf. Thank you for keeping us in your hearts and thoughts!

The Results Are In--

And round 1 goes to... KAITLYN CONNER!  The bone marrow biopsy shows complete remission with no discernible leukemia as checked by UCLA lab's most advanced instruments.  The doctor declares it "the best possible results" and assures us that the prognosis is very good.  *Mom cries*

AND...she gets to go to the movies this afternoon.  *Kaitlyn grins*

I will write more later today.

Just a Regular Day

Well, I said I'd update every day this week.   Except for flushing the i.v. lines this morning and tonight and Kait having to wear a mask in public, we just did normal today.  Got up around 9:30, went down to Denny's for breakfast, walked over to Target and wandered around for a while, came back to the hotel, played on the computer/cruised the internet, walked down to the Panini Cafe for dinner, spent the evening watching sitcoms on t.v.  That's it.  But remember--boring is good!  And it wasn't really boring--it was just normal.  Normal is good.

Leaving Mattel

The crew came at 6 a.m.--earlier than we expected--to take Kaitlyn down to her bone marrow biopsy which was scheduled for 7:30.  They just take the whole entire bed and then wheel her back up when she's done, the same thing they did for her lumbar punctures.  Her ANC was 1000 this morning, so it's still climbing and still looking good.  Everything went well and the doctor told me later that they got a good sample.  They will have the results Thursday afternoon, call Salt Lake to inform them and discuss her transfer to Primary Children's and the plan of care, and we will find out all of that on Friday morning when she goes to Heme/Onc Clinic for regular blood testing, etc.

While Kait was in surgery (they typically sedate pediatric patients for biopsies here, unlike the one she had in Guam where she was awake), I followed up on an insurance application.  I don't know if I had mentioned before, but after all of this began we found out that our "full coverage" insurance in Guam did not cover bone marrow transplants.  The first info we got on what it would cost us was from UCLA's finance dept. who told us that since we were considered international they would need a $1,000,000 (yes, 6 zeroes) downpayment.  In the midst of everything you can imagine how we felt when we were told that!  Anyway--I am happy to tell you that our application to the insurance company in Utah has been approved.  One less stress.

And then I packed and packed and packed.  Wow!  How did we accumulate so much in just 5 weeks?  Of course, in addition to the things we came with, the things we had sent from home, the gifts and cards from everyone, the winter wear we ordered so she wouldn't freeze in Utah we also had the supplies that the nurses so generously raided from their stores to get us through the days before she goes back into the hospital in Salt Lake (yet another thing our insurance company says they don't pay for--sigh).  And the medications--anti-nausea, anti-pain, anti-fungal, antibiotic, etc., etc., etc.  

Kaitlyn woke up around noon in very good spirits, hungry, and ready to be discharged.  Before we left I got one more supervised practice at PICC care (that's the i.v. that sticks out of her arm that takes all the meds and blood draws so she doesn't have to be poked all the time).  It has to be kept clean and the dressing changed every other day, the stat lock and caps changed once a week, and the tubes (lumens) flushed so they don't get clogged at least every 12 hours.  Since it's in a difficult place for Kaitlyn to maneuver, that job falls to Nurse Mom.  

Around 3:30 pm the luggage trolley arrived along with a wheelchair and off we went.  She said she couldn't get over how fresh the air smelled outside.  

We are now comfortably ensconced at the UCLA Tiverton House hotel.  Kaitlyn wants to go out to dinner.  I've begged off until tomorrow because I'm exhausted.  But I'm happy.

Update--Big Week Coming Up!

Yup, it's a big week, so I'll try to give a little update every day.  Here's the progress over the weekend:

Those long-awaited blood counts are finally on the move!  Less than a week ago the ANC (remember? they're the infection fighting ones) were 0.0 and this morning they're 700!  Yay!  Of course, the norm is more like 2500, but they're on their way.  Total white blood cells are over 2,000 and platelets and red cells are also up on their own (i.e., no transfusions needed).

Also this morning something is conspicuously absent in the hospital room--no i.v. pole!  No antibiotics, no i.v. nutrients, no fluids, no painkillers, no anti-nausea--and none needed!  After being tethered for a month she's finally free as a bird!  Well okay, a bird in a hospital room, but free-ER.

The bone marrow biopsy--the gold standard of where we're at to date with the leukemia--is tomorrow morning.