… Or Maybe Not

We received information today that was very disappointing.

There is a type of Aplastic Anemia called Fanconi’s that requires a special chemotherapy protocol. For best results, every transplant patient must be tested for Fanconi’s Anemia in order to have the right chemo schedule. Do you see where we are going here?

It is a two part test that first requires the sample cells to grow and then requires measuring the telomeres within the cell. The size of the telomere helps determine the presence of Fanconi’s anemia.

Naomi had this test done on two occasions, but the specimen failed to grow enough cells for the second part of the test to be performed. The lab never told us this. No one ever called to find out these results until today when we asked the dr in Vegas for them.

This was all determined too late in the day on Friday to do anything about it. The lab does not perform these tests on weekends. So we will wait until City of Hope’s labs open at 7am Monday to perform this test. In Vegas when this test was done, it had to be shipped to another city for processing. That could have contributed to the test failing since her blood cells were so weak. Here at COH, they will draw the blood and begin the test immediately, leaving no time for cells to die.

Rather than the transplant happen on the 18th, she will probably begin chemo around that date now. Not too much of a delay, but some.

Her final bone marrow biopsy and aspiration was completed today and she had some really intense reactions to the meds again. We are adding more meds to the list of allergy meds to be avoided. Her reaction to Benadryl made her nasty, aggressive and appear to have superhuman strength. I had to hold both her hands firmly so she did not rip out her catheter. It took 3 medical professionals (a nurse, doctor and nurse practitioner) to manage her until full sedation took effect. Her blood pressure took a really long time to stabilize afterward. The funny part is that when she was coming out of sedation she heard a baby crying down the hall and picked up her baby doll and talked to it like it was real asking if it wanted milky and if she could snuggle her. It ended up she thought the crying baby was her baby doll and was Caitriona and she was trying to comfort her. Love that girl! Also, the hot air balloons painted on the wall made her laugh because she said the meds made it look like they were floating around the room. We all thought that was funny. She said that it was kind of fun to see how many earrings could hang on my ears, too.  At one point, it looked like each ear had 13 earrings.

7 thoughts on “… Or Maybe Not

  1. By Ross Wilson — Dec 9, 2013 9:22am
    Sometimes I try to figure out why things in life happen like this happen. They have a purpose it can only turn out for the good of all of you in the end. So patience is all I can say to guide you through this time. It will soon clear self and the path will be easier to walk. 🙂
    I Love YOU ALL,
    Uncle Ross/Ross

  2. By Dora M — Dec 7, 2013 1:52am
    Hang in there Kristy.. The good Lord is with you all. You are not alone. We all are praying & faith shall see you all through this.

  3. By Rita Halas — Dec 7, 2013 1:39am
    My mom used to tell me how our Lord always gives the biggest crosses to those he loves the most. Naomi, you, your entire family must be very dear to His Sacred Heart. Sending our prayers.

  4. By Samantha P — Dec 7, 2013 12:38am
    Poor sweet darling girl! Still praying for all of you. The Lord is your ‘ever present help’. He will uphold you and sustain you.

  5. By Terri Cougle Werley — Dec 6, 2013 11:59pm
    Such an amazing little girl.She is able to maintain a sense of humor through all of her many trials , pain and difficult days in this situation.Us grownups neef to rake nore♥ Prayers continue for all of you.God’s hsnd is upon Naomi -, Micayah and all of you .Love and prayers ♥♥♥

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