It has been a long time since I posted. And a lot has happened. So here goes....
Katy got discharged from the hospital on March 2, which was also her 18th Birthday. It was a crazy day! There is always a lot of activity on discharge day, plus, I was trying to have a little party at the hospital, as a surprise to Katy. Also, Emily had seriously injured her knee at dance class the night before. So we were also juggling an ER visit and MRI. (I'll explain more about all that later in this update). But we finally got it all done and Katy came home by dinner. We ate and opened gifts and it was time for bed.
The bone marrow aspirate Katy received the day before discharge came back as 0.09% leukemia. This may seem like very little, but it was not enough to get her to bone marrow transplant. The plan became one of maintaining her blood infusion needs with the hope that she could start maintenance chemotherapy to prolong her life. We hoped that we could check off some things on Katy's bucket list, including going to Europe. But as life has unfolded in the past 5 weeks, things have changed.
As we approached the time Katy might start maintenance chemo, Katy requested she get her double lumen broviac changed to a port. Dr. Afify decided to have another aspirate, as well as a bone marrow biopsy, to see where things stand with the leukemia, so we would have a starting number. After two canceled tries to get the aspirate, it was finally performed on April 3. We finally got the full scope of results last Friday.
Katy's levels of leukemia in her bone marrow are 0.28%. Dr. Afify is not really concerned with this increase due to several complicated factors. What is more concerning is the low cellularity counts in Katy's bone marrow. This number measures the percentage of blood her bone marrow is producing. The normal range varies with age, but Katy's should be at least 70%. It was 20%. Which explains why Katy has continued to be platelet and blood dependent. She has even been on Neupogen, which stimulates her bone marrow to grow white blood cells. Due to this low cellularity, Katy is not a candidate for maintenance chemo, as it will cause further suppression of her bone marrow production.
So what have we been doing with our time? When Katy first got discharged, she had to come up to the hospital every day for platelets. Then every other day, and now every 3-4 days. However, we often seem to have other reasons for coming. So, most weeks, I am at Primary Children's 3-4 times a week. Emily also tore her Medial Patella Femoral Ligament, and took of a bone fragment and cartilage from the back of her Patella. So Emily had surgery on March 17 for that. She was on crutches for about 4 weeks. Now she is receiving Physical Therapy 2 times a week. Mostly, my time is spent as chauffeur to appointments.
We've been able to have some fun too. Katy wanted to go to La Caille for her 18th birthday, so we dressed up one night and had a fancy dinner. We've seen some movies, gone to an art show, and visited the Leonardo (a museum here in Utah) briefly. Katy has renewed her painting lessons. We've spent time with friends, and as a family. And Katy has crossed off one bucket list item by getting a tattoo. Her long time friend Bethany got the same tattoo, of two birds flying together. Finally, we have planned a last minute, 10 day trip to Hawaii. We are going to Oahu, as Katy needs to be near medical facilities for her transfusions. But the resort looks amazing and we are excited. Katy wanted to go to Paris, but her oncology team highly recommended that we not travel to Europe. So, second best is Hawaii!
I'll be honest, it has been a really emotional 5 weeks at home. And the 7 week hospitalization before that was incredibly difficult. We do not know how much time Katy has. As usual she is a medical mystery. Dr. Afify would have expected the leukemia to have returned by now, without treatment. So it's hard to say how long Katy will ward off the inevitable. Katy has decided against getting a second opinion in regards to a bone marrow transplant. However, since she is 18, she can be considered at the Huntsman Cancer Institute for adult medication trials, once her leukemia begins to return more aggressively. This is an option she most likely will consider.
Meanwhile, we will continue to enjoy all the time we can together, and with family and friends. Katy may start to study for her GED. And, as always, life will continue its rhythm until another event changes it. It is like waves in an ocean, ups and downs, with the occasional rogue wave taking you off course.
I will post some photos of the last few weeks in a day or two. Look for an album along the side bar on the right.
Love to you all,
Christina
