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.

When It Happens, It Happens Fast!

Quick update:  Round 2 is finally over--counts are up, fever is gone (3 fever-free days now!), infections are on the way out, red blood cells and platelets are now on their way in (up for the first time on their own--no transfusions necessary-- this morning!).  The next round starts probably in a week to ten days with the bone marrow biopsy scheduled for this Thursday on an outpatient basis.  The house is ready, the family is gathering for dinner tonight and we're going home.  

Dark Clouds and Silver Linings

Right at the time when her counts are coming up (her ANC was1000 yesterday--that's very good), Kaitlyn has developed a superficial infection on the side of her face making that side of her face swollen and painful.   The doctors say that this is probably what has been causing the fevers that she has been having the past 2 1/2 weeks, but because she had no white blood cells to fight the bacteria causing the infection and produce the swellings, etc. that show us where an infection is they had no way to find it.  As soon as her immune system started kicking in the white cells rushed to that spot, pulled their swords, and voila!  Pain and swelling.

So the down-side is that instead of being at home for a week of respite, she is still here at the hospital on antibiotics and pain-killers trying to get rid of the infection.  The up-side that I am so thankful for is that her counts came in a week earlier than expected so that this could be addressed!  Also, by the time she does get home her counts will be really good so there will be fewer restrictions...and we're already planning girls' night out!

Friends, Family, and A Feather Boa!

Last weekend we had some visitors:

Jennifer and Lakell Villegas and April Curtis

Lakell is one of Kait's closest friends--they grew up on Saipan together.  Jenny is her super-awesome older sister and April is her super-awesome sister-in-law!  They jumped in the car last Friday night and drove about 7 hours from Las Vegas to SLC to spend the weekend with us and visit Kait.

And they weren't the only visitors because our nephew, Moses, came up to visit from Spanish Fork.  My photo didn't come out so here's a picture of Eden, Kaitlyn, (little cousin) Sean, Moses, and Ezra last summer at Varnum's camp in Maine--

So we had a houseful last weekend and it was wonderful!  Just like home on Saipan!  It was a boost for Kaitlyn to have them here--definitely good medicine.  They also made plans to come visit again in April when Kaitlyn's treatments will be over and they'll get to spend time with her OUT of the hospital--yet another happy thing to look forward to!

Meanwhile, back at the hospital:

Kaitlyn received a request from one of the other patients to write to her and give her a gift!  This was a surprise.  You would think that there would be quite a bit of camaraderie developed between the 

teenage patients, but this is the ICS ward--Immuno-Compromised Services--so everyone here is at some level of isolation.  By the time their counts are high enough to leave their rooms it's time for them to be discharged, so they don't see much of each other.  Patient confidentiality laws prevent nurses from talking about other patients, so they often don't even know if there are any other patients their age around, when actually they could be right next door!  

The patient who wanted to touch base with Kaitlyn turned out to be an 18-year old girl with the same diagnosis.  She is at the end of her treatments and had a special gift--kind of a legacy gift--to pass on to Kait.  Here are some excerpts from the letter she sent to explain the rest:

"Hey [Kaitlyn]!  My name is _____________.  I am 18 and have been diagnosed with AML since August 6th.  I heard you are on your 2nd round and I wanted to reach out to you because I remember how hard it was during my round 2.... I am now on round 4 and am in the recovery stage....
"So here's the story about the orange boa.--A patient here gave it to me after she had her last round of chemo and someone had given it to her etc...I wore it on New Years Eve when I had my last dose of chemo.  Now it is yours to wear when you reach that highlight.  Trust me, you'll get there!  It seems forever away now but it will come.  This trial is only building you into a stronger woman!"

Kaitlyn really enjoyed the letter and they have written back and forth a couple of times now.  

This definitely has been a rough round, but the other good news is that after she received a priesthood blessing from Dad...

...her counts are on the rise.  And a week early, too. :)

Better Days Ahead

This has been a very rough round for Kaitlyn.  She's had a fever for over a week now.  She's had the terrible bout of mucositis as well as colitis, bloating, and some inflammation in her right lung which has caused some pain.  She also has had c.difficile infection causing diarrhea, etc.  All the skin peeled off the palms of her hands in big sheets.  She has been on i.v. nutrition for over a week because of the pain and irritation all along the digestive tract making it impossible for her to eat normally.  Every 24 hours or so she vomits from the drainage of all the mucus going into her stomach.

The good things are that her hands now look a lot better since the old damaged skin is gone.  The mucositis seems to be improving some...the sores in her mouth are better, her throat doesn't hurt anymore, and there seems to be less mucus build up in her mouth.  The sores on her lips look better, too.  The c. Diff seems to be abating with antibiotics.  The fever continues, but responds well to the i.v. tylenol (which, according to the nurses, has only been available in recent months).  Numerous cultures have been taken and procedures have been done to determine the cause(s) of the fever, but everything has come back negative so far.  The doctors think it is probably a result of the inflammations and will clear up with the return of her immune system.  They expect to see some movement in that direction within the next week.

Kaitlyn is now through two out of four rounds of chemo and, in spite of everything, is at the same weight as she was when she started treatment at the end of October! -I see that as one of the many blessings God has given her to help her through this time.

The State of Kait

*Sorry for not posting--I've been sick with a stomach bug and am banned from visiting Kaitlyn--and Killian!--at the moment.*

Kaitlyn is pretty much the same--the mucositis continues, now accompanied by a couple of infections resulting from it along with fevers resulting from those.  Sigh...the doctor did say they saw a small bump up in her white blood cells this morning, but tomorrow it will be zero and a couple of days later .01 and it will go back and forth like that for another week or two probably.  We need the cavalry!  C'mon wbc's!

At any rate, the procedure at this point is pretty much to try to alleviate symptoms with Tylenol (for fever), antibiotics (for infections), and narcotics (for pain).  The narcotics keep her in la-la land most of the time, but she's pretty with it when someone is talking directly to her--at least she can talk now where a few days ago her throat and mouth were in way too much pain for that.  The doctors assure us that although this round of chemo is making Kait very sick, they are not seeing anything that they do not expect to see under the circumstances.  There is some comfort in that, although it's tough seeing her go through it.

Casey and I had our consult with the bone marrow transplant people on Friday where we received the official medical recommendation that we not pursue a transplant at this time.  We feel good and happy about this direction and Kaitlyn is happy with it as well, which is, of course, the most important thing.

A lot of people have asked me how Kaitlyn has been doing through everything that has happened to her since the end of October.  The best answer I can give to that is to refer you to this post of one of her recent Facebook statuses.  She said to me once that she didn't really know what people meant when they told her how brave she was being, etc.

This is what they mean, Kait--this is what they mean.