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