Update 02/12/17

Hi Everyone,

I am happy to report that Katy has not used up all her 9 lives yet.  Per Katy's standard of defying odds, she has improved drastically from a pulmonary standpoint.  There is question now as to whether Katy ever had an infection or whether her lungs had were overloaded with fluid.  It may never be clear.  As of today, Katy is on 1-3 liters of oxygen, and that may be only because she is still bedridden and not up moving to improve those lungs.

As Katy was significantly improving from a pulmonary standpoint, she has had some setbacks in other areas.  She has something called the BK Virus in her urinary tract as well as her blood.  The doctors have known that Katy has this virus for weeks now, but did not treat it at first, as Katy had no concerning symptoms.  The treatment for this virus is very hard on the kidneys.  So they take a watch and wait approach to treatment.  Unfortunately, as Katy was recovering from the lung problems, this virus reared its ugly head.  She started to severely bleed in her urinary tract.  For Katy's sake, I will not go into great details of the treatment protocol, but lets just say it has been miserable.  We have been treating it for at least 12 days now.

Yesterday and today, we are finally beginning to see some improvement.  I believe it will still be at least a week before we can get Katy out of this hospital, but we are hoping we are beginning to turn a corner.

At this point, the doctors have not performed a bone marrow aspirate on Katy.  We need to get her recovered from this BK Virus.  I do not know the fate of a potential bone marrow transplant at this point.  I can tell you that all the hardships that Katy has had this round of chemotherapy gives both her doctors, and us, pause in thinking of putting her through these, or potentially other medical hardships in the future.  It is a fine line that one walks in dealing with quantity versus quality of life.  Many potentially hard decisions will lay before us in the coming weeks.

A day or two before Valentine's Day, a friend from our PH community sent Katy a care package.  It was a surprise to us.  There were Valentine's Day decorations included so we got to further decorate Katy's room.  Many thanks to Tiffani Frandsen and her family!  Our neighbor, Ali Thackeray, and her cute girls, gave our door a heart attack before Valentine's Day, as well.  (See all the pics below).  Also, a big shoutout to Deb and Amanda, who fly out to help us on a regular basis.  We couldn't do it without you!  Finally, continued thank you's to our friend's, neighbors and family.  It was overwhelming to have the love and support of everyone as Katy was on the brink.  We appreciate all of you.

Katy's 18th Birthday is March 2.  Please send Katy a shoutout on here, Facebook, Instagram, text or card.  This special day may be spent in the hospital, or at home, but in no shape for a large celebration.  Let's give her a big shoutout for reaching such a significant milestone.  We love our Katy!

Christina

Update 02/07/17

Time flies by when you are fighting cancer and in the hospital.  Time blends together and you begin to be confused on which days things happened.  Katy and I have a name for it.  We call it hospital time.

Katy has been in the hospital for her 3rd round of chemotherapy since January 12.  She started with 5 days of chemo drugs and, for the first 2 weeks, was bored while we waited for count recovery.  On the 14th day into the chemotherapy cycle things changed.  It has been crazy ever since.  Katy has had 2 blood bacterial infections, fevers, GI bleeding, a urinary tract infection called BK Virus, and a severe lung infection that has her needing C-Pap and high flow oxygen with a mask.

In the last two weeks, she has had to endure 4 peripheral IV's on top of a double lumen central line, 3 CT Scans, chest x-rays, echocardiograms, EKG's, IV antibiotics and anti-fungal medications, medications to stop the GI bleeds, countless platelet and blood transfusions, serious diuresis, pokes, prods and multiple other indignities.

On Wednesday, Feb. 1, Katy's team of doctors told us that they believe she has a significant fungal lung infection, in which they doubt she can recover from.  Even if she does recover, and it is truly a fungal infection, she will not be able to proceed with bone marrow transplantation.  They asked Katy if she wanted life saving measures, such as intubation and heart resuscitation, to which Katy replied "no."  They suggested she spend time with family and friends and allowed our bird, Basil, to visit her in the hospital.

We called family and had many visitors over this last weekend.  As of today, surprisingly, but in true Katy fashion, Katy has remained stable, if not slightly better, from a pulmonary standpoint.  She started having some GI bleeding problems again yesterday morning.  But even that seems under control today.

To summarize, Katy is in a very fragile, but currently, stable place in terms of her lung infection.  She is on antibiotic and anti-fungal treatments.  We are treating the current GI bleed.  We are anxiously awaiting for her white blood cell count to rise, in order to see how she will respond to this lung infection.  We have been told that Katy will most likely get worse as her white blood cell counts rise because they create an inflammatory response in her lungs.  We are hoping she can manage with the pulmonary support she is currently receiving.  Until we believe treatment can no longer help her, or until she gets better, she will remain in the hospital.

Before Katy got sick, she was creating some beautiful art.  I've included some pics below.

I will try to keep the blog updated every couple of days with brief updates, as we go through this process.  Thanks to everyone for visiting, providing food, and keeping our spirits up.  Thanks so much the Ali Thackeray and her cute girls for giving our front door a heart attack last night.  See pics below.  It takes a village and we feel truly supported.

Love,

Christina

   

 

Update 01/04/2017

Happy New Year!

We had a wonderful holiday break.  Katy was out of the hospital for Christmas and New Years.  In fact, she is still home with us now.  We tried to spend as much time together, in enjoyment, as we could.  Katy had some things she wanted to do while home so we have been checking them off the list.

Christmas was wonderful.  On Christmas Eve, we went out to eat and then drove to Kearns in order to drive through Christmas in Color, which is a Christmas light display set to music.  Katy didn't have the energy to walk around downtown to see the lights, so this is what we did instead.  We came home and opened a couple of gifts.  Everyone went to be pretty early except me.

Christmas Day was great too.  We had a wonderful morning of opening presents, eating brunch and enjoying each other.  A huge thank you to the Santa Hat Society for providing us with lots of beautiful gifts.  We are so lucky to have been the recipients of such a wonderful organization.  It truly helped make our day special.  Katy and I hung out in the afternoon, while Jim and Emily went to see Moana.  For dinner, the Moos Family joined us to celebrate Christmas in the company of good friends.

As a Christmas present for Jim, Katy and Emily, I gathered all our old holiday photos together and put them in iMovie.  I set them to music and gave them the DVD.  It included shots from when Jim and I were kids, all the way through Thanksgiving of this year.  The DVD includes Thanksgivings, Nutcrackers, Christmas and New Year Photos.  You can view it by following the link on the right.  A warning though - it is 17 minutes long, so not all of you may be interested in watching it.

New Year's was quiet.  Emily went to a friend's house for the Eve.  Katy, Jim and I did have a great home made dinner of crab and shrimp spaghetti.  Afterward, Jim and I watched a movie.  Katy was tired so went to bed early.

I made a photo album which includes lots of fun photos from this Holiday Season  (click on it on the right sidebar).   Hope you enjoy seeing some of the fun we had.  Also, I posted our Christmas Letter right before this post, so you can peruse that as well, if you like.

Now onto some health news.  Katy had an aspirate last Wednesday.  We received the final results yesterday. The 2nd round of chemo did decrease the leukemia significantly, however, it did not decrease it enough to move forward with bone marrow transplant.  When Katy was diagnosed, she had 19% leukemia cells in her bone marrow.  After the first chemo treatment that number decreased to 9%.  Now, after the 2nd chemo treatment the percentage has decreased to 0.5%.  In order for the bone marrow transplant to have the best chance of success, she needs less than 0.1% leukemia in her bone marrow.  The risk of the leukemia returning is just too high with any higher percentage.

So, Katy only has two options.  Supportive care or trying to decrease the leukemia again, with a 3rd round of chemotherapy.  She has chosen the latter.  She will start chemotherapy on Monday, January 9.  I know it should seem easy to decrease the leukemia by only 0.4%, but with each round of chemo, the risk of the leukemia becoming resistant to treatment increases.  There is also serious inherent risk with each round of chemo, including life threatening infections and complications arising due to damage to her organs.  However, we still have hope that she can beat this cancer.

So we are hoping that 2017 is the opposite of 2016.  Beginning with a lot of challenges, but ending with happiness, health and some normalcy in our lives.

Here's hoping your 2017 is filled with love, peace and good health.  Hug and kiss those closest to you.  Cherish all your moments.  Sending love to all.

Christina

Holiday Card and Letter

Dear Family and Friends,

I can’t believe it’s that time again.  Time flies by and the years creep up on us.  Our children grow and change, we have both good and bad experiences, but life just keeps moving forward.  And thus, it is time to wish you all Merry Christmas and Happy Holidays in 2016!

Our year started off to be the most normal year we’ve had in a long time.  Both girls were in school, our days took on a regular rhythm and, for the most part we were mostly concerned with regular things like schedules, taxes, home improvements, etc.  We made a quick trip up to KC and Trudy’s cabin, north of Pinedale, WY, and had a fun weekend snowmobiling, relaxing, and hanging out with family.  

Unfortunately, Katy and Emily had separate spring breaks, so it was hard to take a trip together.  For Katy’s spring break, she and Jim went to Southern Utah (Zion National Park and Bryce Canyon), Katy felt so good she was able to hike almost to the top of Angel’s Point (just not the last part with the chains).  Much to Emily’s chagrin, we went to California for Katy’s checkups during Emily’s spring break.  We did try to fit in a few fun things too, like a trip into SF, and seeing the Winchester Mystery House.  The rest of the spring, Emily was busy with dance competitions, and Katy won the purchase award at Paradigm High School’s art show.  Katy went to Prom, and finished the year getting straight A’s.  

The summer was upon us quickly.  Emily promptly cut her hair into a Pixie cut after her ballet recital.  She got several ensemble parts in a summer production of “Seussical” and took a break from dance.  With cutting her hair, she thought she would pass on performing in the Nutcracker this year.  That was short lived as by the end of the summer she really missed dance.  Katy spent the summer hiking, reading, and getting her driver’s license.  Both girls hung out with friends, but especially Emily, who is my social butterfly.

So it ended up that all our summer trips and visiting got squished into a 3-4 week period.  The girls and I took a trip to CA via 2 nights in Las Vegas.  We saw some Las Vegas attractions, went swimming under the “Eiffel Tower” and saw a Cirque du Soleil show.  We then met our cousins in the LA area and spent 4 days going to Universal (Harry Potter World), the Griffith Observatory, the Getty Museum, UCLA, and a trip into Santa Monica.  Then northwards to the Bay Area for a quick visit with Brent and Mom and for appointments.  Katy got a clean bill of health except for a continuing concern about her platelet count dropping.  Upon arrival home, Jim and I took a 2 night trip with our other Cobra fanatics up to Alpine, Wyoming.  It was cold but fun as usual.  No sooner were we done with that trip and our friends, the Steele family came on vacation to Park City.  It was so fun to have Katy and Cullen hanging out together again.  

Katy (17) and Emily (13) started school in late August.  Emily changed schools this year and really likes it much better, although I’m not sure she’s any better at turning in homework. Katy’s platelet levels continued to fall so we went to see her local Hematologist.  Long story short, for those of you who don’t know, Katy was diagnosed with Acute Myeloid Leukemia.  It is so hard to believe that our brave daughter has been diagnosed, yet again, with another life threatening illness.  This leukemia is resistant to treatment so a bone marrow transplant is her best chance.  Emily is the perfect bone marrow match for Katy, which is a huge relief.  

So, in late September, upon Katy’s request, we took a 5 day trip to Hotel del Coronado.  It was a wonderful beach vacation that was a splurge.  We relaxed, swam, ate and enjoyed each other’s company.  The girls got to take a surfing lesson for the first time.  We even had our own hot tub.  Although, bittersweet, this was the highlight of our year.  

Our world has been a whirlwind since then.  Katy’s care is fraught with multiple complications, but she has just finished her second chemotherapy treatment.  Overall, she is handling the treatments remarkably well.  Please hope with us, that this 2nd treatment kills enough leukemia to allow Katy to move forward with the bone marrow transplant.  She is being treated in Salt Lake City at Primary Children’s Hospital this time.  Katy is an amazing fighter and her determination has helped her overcome incredible odds in the past.  For updates go to http://katydoaksjourney.blogspot.com.  Feel free to drop any of us a line.  We all text message.  

I’m sorry to end this letter with sad news, but I also felt like I wanted everyone to hear the wonderful things we were able to do this year, before hearing the bad news.  We are grateful for the normalcy we had, while it lasted.  Hold your family and friends close, take some moments everyday to be thankful, and love with all your heart.  Life is so fragile.  From our family to yours... Merry Christmas, Happy Holidays and Happy New Year!

XXXOOO,

Christina, Jim, Katy and Emily

Update 12/17/16

Wow!  I can't believe it has been over a month since I updated.  Time flies by with so much going on.  I apologize for the delay.  Christmas is almost upon us.

Katy started her 2nd chemotherapy round on Nov. 21 as scheduled.  The chemotherapy was altered to give it the best chance of killing the leukemia cells, thus allowing Katy to move forward to bone marrow transplant.  At the very end of the daily chemotherapy, Katy started having bleeding problems due to low platelets and an inflamed colon.  She lost enough blood to need two units of blood transfused, within a couple of hours, so the oncology team moved her to PICU as a precaution.  Luckily, they were able to stop the bleeding relatively easily and she only spent two days there.  However, she did not receive her last dose of one of the chemo medications.

The rest of her 22 day stay in the hospital was uneventful.  She did not get mouth sores this time, but her hands still got swollen, raw and peeled.  But Katy was able to avoid the pain medicine drip and overall ate well.  We decorated her room with Christmas decor and tried to make her stay as pleasant as possible (which is really not much).   She got released from the hospital on Tuesday evening, Dec. 13.

Until yesterday.  Katy started have bleeding problems again, this time in her stomach.  Again, her platelets were very low.  So she got admitted last night for observation.  The platelet transfusion stopped the bleeding and she was able to eat and hold down food today.  As I write this, we are awaiting a platelet count to see if she can go home this evening.  I'm guessing we'll be able to leave tonight, but if not tonight, then tomorrow.  Now we know we have to keep Katy's platelets higher.

Katy should be home for Christmas!  Yeah!!!  She will have another bone marrow aspirate done the week in between Christmas and New Years, or the first week in the New Year.  This will measure the amount of leukemia cells Katy still has in her bone marrow.  My understanding, at this point, is that if she has less than 5% leukemia cells left, they will take her to transplant.  The lower the amount the better.  So keep your fingers crossed, pray, send positive thoughts, hum to your higher power.  We will appreciate any and all of it!

Happy Holidays to everyone.  Please enjoy your friends and families.  Life is so fragile.

Love,

Christina

Update 11/06/16

I have been meaning to update for the last several days, but things change so fast, it feels like I am dealing with a moving target.  This update is a bit long, so bear with me.  A lot has happened.

Over the weekend of Oct. 29th and 30th Katy's oxygen fell .  So on Monday, Oct. 31, her teams decided to take her into a bronchoscopy.  She had received the IV steroid boluses, but they were worried she may have an infection as well.  Katy's blood counts were coming up, which gave her body the opportunity to mount a response against infection.  So this is the time in the chemo process that the doctors start seeing infectious symptoms.

The bronchoscopy showed the large airways in Katy's lungs were fighting off some sort of infection.  They took a sample of the fluid in her lungs.  Then it became a waiting game to see what organisms grew back positive.   It would be either viral, bacterial or fungal.

As we waited, Katy's white blood cell counts bounced back with strong gusto.  Her mucositis improved greatly.  She stopped sleeping so much, started eating, and became more interactive with everyone.  By the end of the week, the only positive result was Rhinovirus, which is the common cold.  It can be dangerous in immunosuppressed individuals, but luckily Katy's blood counts were up enough for her body to fight off the infection.

Meanwhile, due to the steroid boluses, Katy also became diabetic again.  So during the week, the endocrinology team worked hard at getting her sugars under control.  Also, her transplant team still believes there is inflammation in the small airways of Katy's lungs, which is not due the infection, but instead, due to scar tissue increasing.  This increase in scar tissue can lead to chronic rejection of the lungs.  So, Katy will continue her treatments for this.  Dr. Conrad (Katy's Stanford pulmonologist), asked the oncology team to put Katy on a medication called Perfinidone, which is a new, extremely unusual and hard medication to get.  But they were able to order it and Katy has been on the medication for over a week.

So, on Thursday we got word that Katy would be discharged on Friday.  Woohoo!  Friday came and, of course, there was a glitch.  Our insurance would only pay for the Perfinidone (which is extremely expensive) by our mail order specialty pharmacy.  The doctors and I worked hard to get a guarantee that the medication would be delivered on Saturday.  So we spent the day in the hospital, so Katy could get all three of her doses of the Perfinidone.  She also got a transfusion of Platelets and performed her Pulmonary Function Tests  (PFT's) again.  Her performance on the PFT's had significantly improved.  So Friday evening we blew that joint.  So HAPPY!!

Until Saturday mid-day.  I got on the computer to track the arrival of the Perfinidone.  Much to my dismay, a mistake was made.  The pharmacy sent the package overnight business, instead of overnight, with Saturday delivery.  The Perfinidone would not be here until Monday.  So I contacted her doctors and it was decided she had to be admitted again in order to receive her 3 doses a day until Monday.  Dr. Conrad informed her oncology team the medication was too important to skip.  As you can imagine, Katy was devastated.  She refused to go to the hospital until she spoke to Dr. Conrad personally.  Dr. Conrad did an amazing job of explaining the importance of staying on the Perfinidone.  She was so encouraging of Katy's hard work in keeping herself healthy.  And very empathetic to the situation.  Katy bit the bullet, and allowed us to hospitalize her again for a couple of days.

So that is where we stand at the moment.  Just a few more things to mention.  Once Katy is discharged tomorrow, she will be out of the hospital for about a week.  On, Tuesday (election day), Katy will undergo another bone marrow biopsy, in order to determine the effectiveness of the first round of chemotherapy.  These results will determine our next step in her treatment.  There will be one of 3 options.  First, the leukemia is in temporary remission and our next step will be the bone marrow transplant.  Second, the leukemia is partially gone and the next step will be a second round of the same chemotherapy Katy just underwent.  Or third, the chemo didn't really touch the leukemia.  In this case, we will need to do some soul searching in how to move forward with treatment.

Finally, the last two weeks have been hard for our extended families.  My mother's cousin, Carolee, passed away from liver cancer.  My Aunt Jo (my father's brother's wife) died a week after having a stroke, which led to the discovery of stage 4 metastasized cancer.  And finally, Jim's grandmother  Arlene (Katy's and Emily's last living great-grandparent) died at the age of 96.  Please keep these families in your thoughts with us.  We are sending our deepest condolences, and all our love, to them.

Thanks for taking the time to read this update.  We continue to appreciate all the loving support.

Christina

Update 10/28/2016

First, I want to take this opportunity to thank everyone whom has helped us in any way.  My book club surprised us with frozen meals, our neighbors have helped us with yard work, and we've had treats made for us.  Thank you to all our visitors and friends that have brought us lunch and gifts.  Thanks to my s-sister, Amanda, for driving from Denver and helping with meals, running errands, and providing us with lots of laughter!  And finally, thanks to my mom for flying otr and providing much needed emotional support.

Katy is on Day 22 of her chemotherapy cycle.  That includes the 10 days she received chemo and the 12 days she has spent in the recovery period.  Katy is still hospitalized at this time.  The chemotherapy caused her to have mucositis, which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract.  Due to the pain, Katy was placed on a pain medication drip and put on IV nutrition as she was having trouble eating.  The pain medication makes her tired.  We are still at this point in her care.

However, we got good news early yesterday that her counts have begun to come up.  Her mouth is looking like it is beginning to heal.  

And then we got hit with our first bump in the road.  The pulmonology team here has been ordering pulmonary function testing (PFT's) on Katy once a week.  Her numbers have been dropping over the last 2-3 weeks, which is concerning.  So yesterday, Katy had a CT scan, which confirms what the PFT's suggest.  The small airways in her lungs are trapping air due to inflammation.  The treatment of this is very high doses of IV Steroids and then tapering her down over the course of several weeks.  Katy will also be receiving a medication that is new to me, for the problems in her lungs.  This medication apparently has some pretty significant side effects, so I guess we'll have to wait and see how that may affect her. 

And this is the fine balance that must be walked during her treatment of the leukemia.  The proper treatment for her leukemia puts her donated lungs at risk.  But some of the treatments for the lungs puts her at high infection risk, especially for fungal infections, which would then be terrible for her lungs.  So round the circle we will go.  

Yesterday morning we thought that Katy may be getting out of here in less than a week.  Now, with the lung problem, I'm not sure if that still holds true.  I think we have to take it day by day.  Keep those positive thoughts coming.  We can use them!