Saturday before last Lori called and asked if I could accompany Ashley to Dallas for her 3 day softball tournament on Tuesday. Originally she, Ashley and Kayla were suppose to go, but.... And then Lori's day was going to take her but his doctor nixed that idea on Friday. It's not often that when you tell someone "if there's anything I can do just let me know", so when asked there wasn't hell or high water that could have kept me from going.
I arranged with my offices to work from the hotel, packed Sunday and crammed about 4 days worth of work into Monday. And then we were off come Tuesday morning with the jeep crammed full of coolers, softball stuff and not enough clothes. I told Ash there were only 4 rules, listen to her coach, listen to me, no "L" word or "C" word talk and have fun.
Wednesday was Six Flags, where I kept up with the teenagers (I did take a 30 minute break), rode rides and wore myself out. Team dinner at the Olive Garden. Thursday the tournament started. We were at the fields from 6:30 am to almost 10 that night, luckily we had a breeze and some cloud cover. But I still didn't have a thread of dry clothing on me. Won 3 out of 4 games. Friday was blazing hot, thank goodness for snow cones! Out at the fields from 12 to 8ish, again not a dry thread on me. Not only am I quickly running out of clothes but the hotel room is starting to smell like a man's lockerroom. At a late dinner at IHop and fell into bed. A few of the softball mom's have adopted me as one of their own by this time, which made it a more pleasant trip. Of course I didn't give them much of a choice, it's kind of hard to ignore the crazy woman sitting in your midst yelling for all your kids. Saturday we're still in play and it's way hot and again thank goodness for snow cones. We made it to 5th place out of 23 teams. Ashley played great and had an awesome time.
We got home yesterday about 4 pm and I wanted to collapse but laundry was screaming my name.
Kayla's third treatment of chemo is scheduled for tomorrow. She's still mad at the world at this point. But it seems she's responding well to the chemo. No hair loss as of yet. That will be the next big hurdle.
Monday, July 26, 2010
Monday, July 19, 2010
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.
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.
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