Kayla

I figured I'd come in and do some cleaning and use this place to vent about this journey Kayla is on. Seems a more appropriate place than OT or facebook.

Kayla is my BF's youngest. July 9th she was diagnosed with leukemia - ALL. She'll be 14 in September. She's as close to a second daughter as I'll ever come.

The following I've para-copied from OT to save time and energy. My enegy seems to have been zapped. " BF has been divorced twice. Two kids, one from each marriage. The oldest child is an easy child, intelligent, kind, witty, easy to parent. The youngest is a handfull - a major handfull. Obnoxious, argumentative, impulsive, willfull, has now been diagnosed with Asperger's but very mild, creative, moody and intelligent. She's my favorite."

I'm inserting a Kayla story here to give you a better idea of this crazy child. :) Two years ago at the end of the school year Ashley brought home the school yearbook with a "Mom! Come here and look at this!" Kayla was in lots of pictures. Lots of pictures she shouldn't have been in. She was in the soccer group photo, the choir group photo, the basketball group photo, the drama group photo (I'm sure there are others but...). So Lori had Kayla come in and explain. Seems on photo day Kayla's class had a substitute teacher. The announcement for drama group picture came over the speaker to assemble in the auditorium. Kayla was bored so decided having a picture taken was better than being bored. So she just got up and left the room and headed to the auditorium. No one even questioned her, not even the group when she inserted herself. She did that each time an announcement came over and no one ever told her she couldn't have her picture taken with them. Asked by her sister why she wasn't in the football pic her reply was "boys stink". I admit it. I laughed. Hard.

So she was admitted on Friday. By Monday she'd been poked, prodded, jabbed, a port installed and her first round of chemo. Test results showed that 95% her bone marrow was producing leukemic cells. But the leukemic cells had not gotten into the spine, so a round of chemo was injected into her spinal column.

Lori had the doctor tell her she has leukemia. After the doctor had gone thru her spiel about leukemia and such Kayla said "I have a question. Are you saying I have cancer?" When the doctor said yes she did Kayla asked if she was going to lose her hair. When the doctor said yes she was. Kayla's response was "that fucking sucks!" Lori didn't know whether to laugh or cry or scold. Her and the doctor both laughed.

General random info: Kayla went into the hospital with a count of 49,000. Normal is between 4300 and 10800. After the first round of chemo it had dropped to 4500. The test results for the Philadelphia chromosome hasn't come back yet. She'll start losing her hair probably sometime this week or next. She got to go home Friday night and goes back in today for her second treatment.

Here's the thing that hit me - She basically has to live in a bubble for the first month because she's suseptible to everything. Home schooled for the first 6 months and frequently won't be able to attend after that. Treatment lasts about 2 1/2 years. There will be days where her count is such that she can't leave the house and then there will be days that her count is good enough that it might be "let's go see a movie" day. For her age group with the results of tests that have come back so far she falls into the survival rate of somewhere around 40% after 5 yrs.

To paraphrase Kayla - this fucking sucks.