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