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.

And The Winner of Round 1 Is--

Jacob Conner!  YOU are the preliminary winner* for bone marrow transplant donor!  Congratulations Jacob!    Good luck in the next round toward being the PERFECT MATCH!

*Two younger siblings have yet to compete.  

Coming up Next...

Kaitlyn's blood cell counts are finally on the rise!  So, here's what's coming up:
Tomorrow--we may find out if any of the siblings that have been tested so far (Levi, Alexa, Mallory, Sam, or Jacob), is a preliminary bone marrow match.  I heard today that the lab said somebody's test results look promising.  I don't know whose.
In the next few days--ANC (ahh...another acronym), which stands for Absolute Neutrophil Count.  Neutrophils are the white blood cells that fight infection.  When you have few, or no, neutrophils due to, say, chemotherapy, you are labelled "neutropenic" and put in isolation on a low-bacteria diet.  Kaitlyn has been on neutropenic restrictions for almost a month.  That's right--confined to her hospital room for a month...not allowed fresh fruits or fresh vegetables in a month....  As her white blood cells rise in the next few days she should be able to go out in the hallway and eat a banana!  Hey--you don't know how much it means 'til it's gone!
Monday--Kaitlyn has been tentatively scheduled for her bone marrow biopsy.  This will tell whether this first round of chemo has put the leukemia in remission.
A day or two later--Kait will be discharged and, if a local pilot steps up and volunteers, we will be flown to SLC by Angel Flight.

So that's it.  Pray for a perfect match, a higher neutrophil count, a safe flight, and remission!
Stay tuned....

Don't Worry...

When I woke up this morning I found out that Kaitlyn had been given a blood transfusion during the night.  And she had one the night before.  And she had a platelet transfusion yesterday morning.  Me, "*worry, worry, worry*"

Now, transfusions are necessarily common among the AML set, but after a couple of weeks of her not having any and then being given 3 in a 24 hour period?  Hey--isn't this the time when her blood counts are supposed to be on the rise? Her white cells are still at zero and now the red cells and platelets are also on the decline?  That didn't sound good.  Me again, "*worry, worry, worry*"

By the time the doctor came in I had at least talked myself down to a manageable level.  She explained that transfusions are very common at this point in the process.  Red blood cells live 120 days then die and are replaced by new ones made in our bone marrow.  Kaitlyn's bone marrow function has been deliberately suppressed by the chemo so after being in here a month most of the red blood cells that were in whatever stage of life when she came in are dying off and since her bone marrow hasn't quite kicked in yet there's not much of anything to replace them so they maintain patients with transfusions until the--that's right--blood counts come up!

Which, everyone assures me, they will.

An Acronym a Day...

There isn't much to post right now--we're in the slow, slooooow process of waiting for Kaitlyn's blood counts to rise.

For those interested, I'll fill you in on some of the daily routine's acronyms:

CBC - Complete Blood Count
Every morning, at my request, the nurse brings me the latest lab report on Kaitlyn's twice-daily blood test.  I study it for about 20 minutes searching for any movement in percentages, comparing it to the day before, etc.  My understanding of what is reported is probably about the same as Kait's WBCC (White Blood Cell Count), which is just above 0.

CHG Bath - Chlorohexidine Gluconate Bath
After every shower Kaitlyn has to do a CHG bath.  CHG is an anti-microbial solution.  We dilute the CHG 50/50 with water and after she's dried off from her shower we use at least 7 disposable wipes to basically "paint" it on her, then she lets it air dry before she gets dressed. This is to  prevent infection--especially any kind of staph infections--while her immune system is depressed.  She also has to rinse her mouth with a CHG mouthwash 3-4 times every day, which I think is why she has had so little problem with mucositis (see below).

TPN - Total Parenteral Nutrition
The last time Kaitlyn ate a meal was on the evening of November 8--she had a piece of pizza.  One piece.  After that her appetite bottomed out and she won't/can't eat anything.  We are told that this is very common with the intense chemo treatment she received.  The drugs have a pretty strong effect on the digestive system and thankfully Kaitlyn has not had some of the terrible side-effects like severe nausea, extremely painful mouth sores (i.e., mucositis), etc., that others have experienced, but she does have no appetite.  We are assured that as her counts come up one of the first things to heal will be the digestive tract and her appetite will return.  In the meantime, she is given all of her nutrition (including lipids/fats) through her i.v.  In an effort to keep something going through her system on occasion, I've been trying a few things and found that she will eat small things like goldfish crackers when she's watching a movie or t.v. show.  She said that they are so small she can eat them without thinking about it.  Maybe I'll try the mini peanut butter Ritz.  FYI--she's only lost about 5 pounds since she's been here.  Not that she had any extra to lose, but I don't think that's too bad.

 

A Voice of Experience

Fact:  Acute myelogenous leukemia's victims are usually adults and they're usually men.

Brother Johnson came to visit Kaitlyn today. (In our church we call each other "brother" and "sister," and it is used as a respectful address similar to "Mr." and "Mrs." as well.)  Anyway, Casey and I had met Brother Johnson here at church, but he hadn't ever met Kaitlyn of course.  He's a very nice man, probably in his 70's, but the really interesting thing about him is that he has AML--the same type of leukemia Kaitlyn has.

Brother Johnson was diagnosed with AML in January of this year.  He went through all the courses of chemo and he's doing pretty well now.  He talked with Kaitlyn a little about how the treatments go and they compared notes.  He gave her some tips and encouraged her to move around and try to be as active as she can even if she didn't really feel like it.  He also advised her not to fall down--evidently he fell and broke several ribs during his treatments!  (I'm not sure that was related to the leukemia.)  He said that he has not had a bone marrow transplant yet, but if he relapses he will.

We told him about our plans to transfer to SLC to be closer to family and he agreed that sounded like a good idea.  He told us how much having his sons visit helped him when he was still in the hospital.  (He has 8 sons!)  He said he would be by to visit again and asked if he could do anything for us.  Nothing better than having someone diagnosed 10 months ago walk in here looking healthy and sound!

I am so impressed that he took the time to come and talk to a young girl he's never even seen before, but then everyone here has been great.  We have truly been blessed to land among such caring people!

...And It's Gone

Casey & Kait

After the pixie cut of last week the hair started falling fast, so today we borrowed the hair clippers from Child Life and off it went!  Casey was the barber and we still think she's a cutie patootie!  Love you Kaity-lyn.

Medical update:
Kaitlyn's response to the treatments has been textbook.  She is often very tired right now and she has no appetite, but that's to be expected with her counts so low.  As of this morning's lab report the ANC (absolute neutrophil count) has gone from 0.0 to 0.1.  Neutrophils are the white blood cells that fight infection and keep us healthy.  Although 0.1 may not sound like much it was happy news here because this means that after chemo had killed off everything that her body is starting to produce neutrophils again.  When it gets up around .5 she'll be able to leave her room and when it gets to 1+ she may get a few days out of the hospital!!  Woohoo!  The doctors are very pleased with her progress so far.

Boring Is Good...Kind of

Yup.  Boring is good.
Kaitlyn's chemo is done for this round.  Boring.
She tolerated chemo quite well.  Yawn.
Her white blood cell counts are at zero now.  As expected.
Currently, she pretty much has no functioning immune system.  Just as planned.
So far all tests for any infection are negative.  Nothing exciting there.
Nurse, "Do you have any pain?" Kait, "No." Nurse, "Any nausea?" Kait, "No."  Nurse, "How do you feel?" Kait, "OK."
Ho-hum.

So we wait.  
Wait for her immune system to begin to rebuild itself.
Wait for her blood cell counts to begin to rise.
Wait and pray that no infections set in.
Wait for the results of the next bone marrow biopsy.

Ever had to wait in a 16 x 12 room?  For weeks?

The Haircut Day

Now that Kaitlyn's hair is coming out fast it was time for the Haircut.  The wonderful Child Life specialists here, Hillary and Edina, arranged it with the Giuseppe Franco salon in Beverly Hills.  One of their stylists actually came here to do the cut.  I think she looks mah-velous!

Chelsea--the beautician--getting Kait's hair ready for the crop.

She was fast and did a great job!

...and at the same time  in Bar Harbor, Maine...

The beautiful Kait!

God Bless Us, Every One!

Kaitlyn is feeling much better.  I wanted to get that right in there first thing because I know there is worrying out there--join the club! :)  She was even hungry last night!  Unfortunately, they won't let her have anything to eat because they want her digestive system to rest from the vomiting, etc.  Aaarrrgh!  Now they are saying that if she's still feeling well after her lumbar puncture tomorrow then she can eat.  She is getting everything she needs through her i.v., but gee whiz!  I hope she and her body get into food-synch pretty soon here!

Anyway--that isn't the point of this post.  This post is to say thank you, and I really can't say enough thanks for the support we have been getting from family, friends, and even acquaintances.  Some have adopted the cancer-support hairstyle:

      

Some have sent wonderful gifts and messages:

In fact, yesterday Kaitlyn received a package from my sister that included stickers to decorate her room, lotions and moisturizers, and brightly-framed photos of family, extended family, and even a group photo of her and her friends on Saipan.  Kait said that she liked getting things from former cancer patients (my sister had cancer about 14 years ago), because they seemed to know what to send.

There have been visits--a big surprise since we know so few people in the area--and we really appreciated the time they have taken to drive to L.A. to see us.  There have been phone calls, video chats, texts, FB posts, and gifts.  Such an outpouring of love and support!  I even found out that after Casey and I left church on Sunday the bishop called the Relief Society president, Young Womens' president, and Leona (the lady that befriended me on Sunday, and actually did come to check on me yesterday) to his office to discuss what they could do to help us while we're here.  They don't even know us!

And I want to say a word to the people who feel like all they can do to help is "just" pray.  You're right.  That is the be-all, end-all of what you can do.  Nothing is as powerful, as helpful, or can take the place of praying for us.  Thank you all for remembering us and Kait in your prayers.  Please keep it up!

The newspapers and other media are so full of what's wrong in the world and the depravities of people that it's easy to forget that by far most people are good and want to do good.  I used to think that if I ever had a child go through something like this that I would be so traumatized that nothing anyone did to support us emotionally would help.  I was wrong.  Thankfully.

A Not-So-Good Day

Casey and I went to church yesterday--I'm trying to develop some local acquaintances and support for me and Kaitlyn--and Alexa stayed with Kait.  At church we met an older man who had been diagnosed with AML last January.  His wife told me that the worst part of the treatments start as the chemo regimen ends.  I also met people who work here at the hospital and one woman who gave me her name and number and said she would be in to check on us later this week.  I really appreciated the friendliness and welcome.

The lady at church had it right.  When we returned to the hospital we found out that Kaitlyn had spiked a pretty high fever in the morning and it turned out to be a stressful afternoon.  Thankfully, Tylenol brought it down and she and Alexa ended up having a "girls' night" via video chat with Eden in Saipan and Mallory in Bar Harbor.

Casey stayed with Kaitlyn over night while Alexa and I went to the hotel.  It was a bad night of more fever, vomiting, diarrhea, abdominal pain--poor thing.  She felt awful.  Kaitlyn only has her last 3 doses of chemo to go for this round--noon, midnight, and noon tomorrow.  Evidently there will be more of the same for another 10 days or until her blood counts start coming back up.  She received more platelets and another blood transfusion yesterday and we're told that the fever could be caused by the blood...or the chemo...or something else.  They have her on a full spectrum of antibiotics just in case it's the "something else."

Not a good day.  Better days will come.

Blessings:

• Prayer
• Scriptures
• a fantastic nursing staff
• Casey & Alexa

A Visit for Us...and a Surprise Visitor for Kait!

Kaitlyn had another spinal tap yesterday.  They seem to be getting progressively more bothersome and this time her back and head ached quite a bit.  It's hard to feel up when you feel crummy.

A bright spot in the day for Casey and me was a visit from Harvey and Carrie Olsingch, old friends that we knew from our early days in Saipan who moved to the San Diego area about 10 years ago.  By the time they arrived it was a little late and Kaitlyn had finally fallen asleep, so we went downstairs and had a wonderful visit with them.

The next morning Kaitlyn had a surprise visitor when she awoke--and she's been smiling ever since!

Kaitlyn & Alexa

Blessings -  God hears 

New News

Did I ever mention that throughout this last 10 days I have seen over and over again things that God has put into place months and years ahead of time in preparation for this event in Kaitlyn's life?  Read on.

Our 1-week anniversary in the hospital and we have some news:

1. Kaitlyn's lumbar puncture (spinal tap) from last Friday showed cancer cells in the spinal fluid.  However, her puncture from Tuesday showed NO cancer cells in the spinal fluid.  She received another spinal tap chemo treatment this morning (Friday) and she'll have another on Tuesday and if she stays clean, they will end the spinal chemo treatments.
2. Kait's bone marrow biopsy results are in and she is NOT high risk, but she is also not low risk.  She falls in the intermediate risk category and so they are planning for a bone marrow transplant.  Okay--so how does this qualify as "good" news?  Well, several things.  A bone marrow transplant, while risky and definitely grueling, offers the best chance for a complete cure.  Also, Kaitlyn has a lot of things going for her that give her a good chance for a successful transplant--8 things to be precise.  A sibling match is considered best and each sibling has a 1 in 4 chance of being a perfect match.  We asked the doctor if there was an age limit and he said that our other 7 children (ages 13 to 31) fall into the perfect range for donors.  So--to the Conner Kids:  We will soon be letting you know the procedure for beginning the testing to see if any of you are a bone marrow match for Kaitlyn.  The one thing I know is that it begins with just a blood test--easy-peasy.
3. What is the 8th thing Kaitlyn has going for her?  Well, when our last child, Eden, was born 13 years ago both Casey and I had sisters who were struggling with different types of cancer.  My sister asked if we might consider saving our baby's cord blood when she was born "just in case" which we did.  That cord blood is sitting, as we speak, in the New England Cord Blood Bank in Boston.  Yup.  Cord blood does not need to be an exact match, is less likely to produce graft vs. host disease, has more stem cells, and has a greater ability to reproduce.  It is also more like to be killed by the recipient's own cells, but it's a really good plan B and many lives have been saved with cord blood cells.   And when I think of all the years that I didn't feel like I had the money to continue the payments or just wondered why we were still holding on to that blood instead of just letting it go into the general blood bank!  When I told the doctor about our little deposit, he smiled.  That's got to be a good thing!

Trick or Treat!

**I'm still having trouble uploading photos, but I did get a few on some of the former posts.*

Yesterday was another good day.  Kaitlyn was up and around taking a shower, putting on her own clothes (as opposed to a hospital gown, which is fine as long as nobody is walking behind you!), digging through her suitcase, eating her meals, etc.  Hillary (Child Life) tried to get her interested in dressing up--she brought in a bunch of choices for costumes--or doing some "reverse trick-or-treating" where people dress up, but come and give you candy instead of you going to them.  She dressed up a little bit, but she really wasn't into it.  She said that Halloween was only fun because of friends--I thought it was only fun because of candy, but whatever.

One fun thing that happened yesterday was that Kait received a Halloween bouquet from my cousins in Colorado.  Fresh flowers and plants are not allowed in the rooms on this floor, so they took it into the break room and I went in and snapped a photo so Kaitlyn could see it--she thought it was cool.  Today she received a balloon bouquet from the Tanners in Alaska.  They really brighten up the room.

In the afternoon the nurse came to tell us that Kaitlyn's hemoglobin was low and she would be getting a blood transfusion, which she did.  The perfect thing to do on Halloween! :)  The night nurses educated us on the necessity of keeping things as clean as possible for the upcoming weeks. Kaitlyn's blood count will be taken to zero, meaning that she won't have any white blood cells to fight off any kind of bacteria or infection, even from her own body.  Chemo plays no favorites--it kills cancer cells and healthy cells alike.  It will take several weeks for her body to build the counts back up again.  Kait felt so good after getting the transfusion that she didn't want to waste a moment and ended up staying up all night chatting with friends on Saipan, watching t.v., playing games, etc.

By morning she wasn't feeling very well (awake for 24 hours?), so the nurse gave her some meds and she's been sleeping most of the time since then.  They did tell us that Kaitlyn would be getting a platelet transfusion today--the second one since she's been here.  It gave Casey and me a chance to get out and do some shopping and laundry.  After we returned the nurse said that since Kaitlyn's vital signs have been so stable they would be checking them now every 12 hours instead of every 6 hours.  Also, she will no longer receive a medication that decreases the uric acid in her body because her levels are now right where they should be.

Little by little...

Blessings:

That I'm married to the best guy in the world.  Happy anniversary Casey!

A Good Day

I was concerned about today because Kaitlyn was scheduled for a full load of chemo and a lumbar puncture (spinal tap)--I thought it was going to be just a long, rough day.  Her chemo is administered like this:  10 consecutive days of Ara-C over 5 minutes (they call it a 5 minute push because the nurse just injects it into the tube instead of having to hang a bag to drip in over a longer period of time) twice a day (every 12 hours), 5 consecutive days of Etopocide over 4 hours, 3 days every other day of Donorubicin over 6 hours.  So some days she has 3 chemo drugs and some days 2.

The good news is that a couple of the anti-nausea meds are working really well for Kaitlyn at this point and she ended up feeling really well almost all day!  The spinal tap was in the afternoon and they put her completely out for that which she has no problem with at all.  In fact, she says that she likes to have the spinal tap because being put out makes the day go by faster.  She's pretty much been on Saipan time since we arrived here and I think that this was the first day that she was on a more normal schedule where she actually slept during the night.

Uncle Bob and Aunt Kathie came to visit in the morning.  They brought her a stuffed toy dog named "Patches," but she tells me that she is changing the name to "El Patcho."  Yeah.  I don't know.  That's Kait. :) I told Casey that by the time Kaitlyn leaves here she'll probably have her weight in stuffed toys. (She looooves them!)

We got to meet another one of the team yesterday as well:

Hillary - Child Life Specialist.  We'd been hearing about the hospital's "awesome" Child Life program since day one when Kait received a brightly colored blanket and pillow case from them down in the ER.  Although we haven't had much other experience with it yet, I have to admit it does sound great.  Hillary talked with Kaitlyn about things she could do before her hair goes like having a professional beautician come in to try fun haircuts or crazy colors.  She also told her that they have a program called "Deck My Room."  Kaitlyn will fill out a form telling about things she likes, etc., they'll send it off to the program where volunteers will go shopping for things, then they will come in and completely decorate thee hospital room according to Kaitlyn's favorite things!  I wish I had someone that would do that for my house!

Hillary went down with Kaitlyn for the lumbar puncture.

Blessings:

• Child Life
• Bob & Kathie
• Prayer, Priesthood, & Promises

The Team

**I will get some pics up here soon.**

Since Kait was admitted to the hospital on a Friday and didn't get to her room until Friday night, this was the first day (Monday) that everyone that's here during a regular work week was around.  First I will tell you that Kaitlyn's day was similar to Sunday--sick (but not AS sick) in the morning and then steadily better late afternoon and evening.  The good thing is that the anti-nausea meds make her sleepy so, along with the fact that she's still pretty much on Saipan time, she can sleep through most of the sick-ish hours.  Of course, she stays up all night long--which is when she feels the best--but she's being interrupted all the time then with chemo, vitals, bathroom runs, etc., anyway.  That's also the time she gets to chat with Saipan friends.  I'm very thankful for little things like that that work out well for her.

So--here's what we learned from all of our medical team visitors today:

Teri, The Dietitian Tech - Kaitlyn is on a low-bacteria diet.  This is to reduce the possibility of any kind of infection.  Some of the familiar foods she CANNOT have are fresh fruits, fresh veggies, honey, yogurt (adults can have it, but kids cannot--?), nuts, and dried fruits among other things.  She CAN have homemade treats as long as they are fully cooked and do not contain any dried fruits or nuts.  Or honey, I guess.  

Caroline, The Physical Therapist - One of my concerns has been Kaitlyn becoming weak not only from disease and treatment, but from too much time in bed.  I was happy to have Caroline come in and talk with her about the importance of getting out of bed everyday--even when she doesn't feel that great.  She watched Kaitlyn take a few steps and affirmed that she is strong and moves well now, but made her promise that she would get up every day to sit in a chair, take a shower, walk around the room, etc.  She is arranging to have a stationary bike brought into the room next week that she encourages Kaitlyn to use.

Wendy, The Social Worker - I had a few questions for Wendy--Q: Can I stay in Kaitlyn's room the whole time she is here?  A: Yes, of course.  Q:  What happens at the end of this first 28-day cycle?  A:  Normally, if the patient is in remission and everything looks good, they can go home for a few days.

Well, that is the problem isn't it?  "Home" is 5,000 miles away.  So this was the opening for a discussion about the possibility of transferring to Primary Children's Hospital in Salt Lake City.  We have 4 other children who live in Salt Lake and many friends in the area--some of whom are friends from Saipan.  It is honestly the closest thing we have to home in the States, so Kaitlyn very much wants to go there.  Treatment for her leukemia is protocol driven which means that every U.S. children's hospital uses the same treatment, the same drugs and the same schedule.  Wendy even said that, since public transportation such as a plane would not be possible, she can arrange a flight in a private plane with a volunteer pilot who would take us there for free.  So, if the insurance company will work with us on this--and Kaitlyn is in remission when the 28 days is up--well, we really want to ask everyone to pray for that.  I am not sure which will be tougher--the leukemia or the insurance company!

Blessings:

• Again, modern technology--especially communications.
• The wonderful flight attendants especially on the flight from Guam to Hawaii.  
• Friends and Family and Facebook.

First Visitors

One of the things I've worried about in being here is that Kait is so far away from home.  Visits from family and friends are important to getting through grueling treatments, recovery, and staying connected with life outside the hospital world.  With that said I really want to encourage all of Kaitlyn's friends to call, chat, video chat, or text with her whenever you can--she needs those "visits."

As I said in yesterday's post, the morning after her first chemo treatment was rough, but a bright spot came when we had our very first (online) visitor, Kait's sister Mallory, brother-in-law Michael, and niece and nephew Madie and Finn from Bar Harbor, Maine.  I can't tell you what a tremendous lift it was to all of us to watch 3-year-old Madie twirling around the room singing "Cinderwewwy, Cinderwewwy" from Disney's "Cinderella," in her beautiful,, cheery voice!  Even Kaitlyn couldn't help but smile--which we all know isn't easy to do when you're feeling sick to your stomach--at Madie's antics.  Kait did drift off to sleep during the visit, but it was the best medicine ever!

Around 4 p.m., we had a visit from some friends who used to live on Saipan, Van and Wendy Rider.  I don't remember the name of the town they live in now, but it's about an hour and 15 min. to the west of L.A.  I think they live the closest of any friends we have here in the area--which aren't many.  Van and Casey were able to give Kaitlyn a beautiful blessing of healing, courage, and strength and also to give us the sacramental ordinance which we observe each week in our Church as a way to renew our promise to follow Christ.  Wendy had taken the time to contact a couple of Kaitlyn's friends to find out a few of her favorite things and so brought homemade pumpkin cookies (Kait ate 3!! The only thing she had eaten all day--yay!)  and a few other gifts.

After the Riders left, we had another online visit from the Conner Clan this time live from Salt Lake City--Levi and his wife Raquel, Alexa, Sam, and Jacob.  By this time Kaitlyn was feeling pretty good and so it was pretty much a "Let's Get Kait to Laugh" show, which, for those of you who know the family, could have easily gone on all night long.  It was fun and another huge lift to the day.

What Kind of Leukemia?

Kaitlyn now has a confirmed diagnosis of Acute Myeloid Leukemia (AML). We don't know what is ahead and I do much better just taking a step at a time.  On Friday she had a lumbar puncture (spinal tap) and they installed a "pick line" which is an IV in her arm that allows them to draw blood, give medicines, and even chemo without having to poke her again.  

She began 10 days of very intensive chemotherapy last night (Sat., October 27)--so intensive that one of the 3 chemo drugs is administered every 12 hours for 10 days. She has slept through most of it (they have given her several anti-nausea meds some of which cause drowsiness), but was nauseated and headachy when she woke up, so sleeping is good for now.  She has vomited once and now doesn't want to have to move.

Kaitlyn is in isolation--she cannot leave her room, but she can have healthy visitors. Of course, we know very few people here--I wish she could have the support and distraction of being able to have friends visit, but that is not going to be happening very much. We do have some friends that stayed at the cabin with us in Utah this summer who will be coming to visit this afternoon and Uncle Bob has said he would be by Monday or Tuesday.

I've been staying here in the hospital with her and Casey has been at a hotel nearby (5 min. walk) that caters to patient families. Casey will probably stay here in the States through this first round of chemo.

Blessings:

• Sleep.
• That Casey is able to be here for so long.
• An incredibly skilled and kind team of medical and support professionals.
• Prayer.

The Journey Begins

Kaitlyn started with flu/strep symptoms around Oct. 12. Casey took her in to FHP (an HMO) on the 15th with sore throat, headache, and fever (101 or so--not terribly high). They prescribed amoxicillin for the strep. After a week on the meds her fever was gone, sore throat gone, but she had developed a rash on the trunk of her body and had a constant headache and was very fatigued. (Actually, the docs still aren't sure what caused the rash.) On Tues, the 23rd Casey took her in to her regular doctor. On Wed. the 24th Kaitlyn stayed home from school and Casey called her doctor to say the rash had spread. At this point the doctor sent her for blood tests and received a panic call from the lab within 2 hours.  

Dr. Ada called Casey to have us come to her office with Kaitlyn--by this time it was about 5:30 p.m.  It was there that we received the explanation of the blood test findings and her preliminary diagnosis of leukemia.   Dr. Ada sent us to the hospital for a blood transfusion (she received 2 units), which she said would be necessary for Kaitlyn to feel better and to allow her to make the flight for off-island treatment.  (Evidently Kait's white blood cell count was so high that it affects the viscosity of the blood, but that was somewhat diluted with the transfusion.)  She and Casey arrived home after midnight and Kaitlyn did feel a lot better.

Thursday morning Casey and Kaitlyn flew to Guam to the oncology clinic.  There they did more testing and a bone marrow biopsy and the oncologist, Dr. Chaundry, confirmed the diagnosis.  He told Casey that if it was his daughter he would take her off-island as soon as possible, so he obtained a referral to UCLA Medical Center (the States-side hospital in our provider network) and called me to come.  I made a few haphazard arrangements for Eden and Ezra (thank goodness for kind and thoughtful people who actually called me and suggested things I might need to do and how they could help me with those things!), and flew to Guam that evening.  Early the next morning we were on the plane for the 16 hour trip to California.  We didn't even have the referral completed until our layover in Hawaii when Casey received a call from our provider on Saipan telling us that when we arrived at UCLA Medical Center to go to the emergency entrance of the Mattel Children's Hospital and ask for Dr. Shiller.  We arrived at the hospital at 6:30 a.m. (Pacific Time) on Friday, October 26.

Blessings Along The Way:

• Dr. Ada
• That the CHC in Saipan had blood for Kaitlyn--we were informed that even 2 weeks before they had no blood on hand.
• A successful 3+ year old business that provides good insurance, financial resources, and really came in with logistical support in helping us to communicate with the insurance company, get plane tickets, etc., in record time.
• Cliff and Denice--our business partners--who kept us overnight, took us to the airport, assured us that anything we needed from them was just a phone call away, and pray for us.
• Christina and Karen who called me on Thursday when I was trying desperately to make my brain work with suggestions of what I might need to do and offers of help.
• All the people who have shared my FB post announcing this with their own friends and family.  A true outpouring of support, prayers, and faith have been with us at the start of this road.