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!
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.
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! :)
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!
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.
