Tuesday, November 11, 2008


We had to take Grandma to the airport today. Usually I get an early wake-up call from Miss Bella, but today everyone was still out at 5am-of course. Last night, everyone agreed that they wanted to wake up to take grandma to the airport- but I wasn't sure I wanted to wake them up. One by one they were all awake and ready to go by the time we had to leave. I get them all buckled in and am hopping in the car when Lily starts undoing her seatbelt. We are already 20 minutes behind and if there is any traffic, we are in trouble. I give her a warning- she starts kicking and screaming. She gets a couple more warnings as Grandma tries to get her in the seat and she is not cooperating. I tell her that she puts the seatbelt on or she doesn't go. She refused. So I took her into the house and handed her to a still half asleep Phil. I hope our neighbors weren't planning on sleeping in today....It's pretty tough to maneuver a 40 pound kid who has a big owie on her leg, not to mention a big belly owie that is still less than a month old- kicking and screaming into the house. We finally get on our way. A few minutes later Phil calls to give me the report. When asked if she wants to talk to mommy I hear her scream in the backgound " I do NOT want to talk to MOMMY!" Wow- she really is mad if she won't talk to me! Phil reassures me- "Don't worry she'll be fine" to which I hear another scream " I will NOT BE FINE!" Well allrightythen. And all by 5:45 am... does not bode well for today.

Lily gets around very well. She uses her walker downstairs and crawls or hops upstairs. She tires out pretty easily. She tries to hook her bad leg over the walker and balance. We discourage that. She can also dance with the walker. Funny, but a bit scary. At one point the other day, Kiera went to the park and Lily decided she wanted to go too. I was chatting with a neighbor as she crawled out the door, down the front steps and halfway in front of the house by the time I could get to her. And she had nothing but underwear on. The dress she was wearing apparently held her back...

Due to this and her other activities- the bandage on her leg was getting gross. Plus the swelling has gone down, so it was a little loose. She kept sticking her fingers in it to scratch so I finally decided we had to redress it. I've been hesitant to do it because Dr. E warned us that the scar was going to be ugly. Due to the amount of tissue taken out- some of the subcutaneous layers could not be sewn back together. I knew it was going to be tough. I could see the edge under the dressing- it was not pretty. Big old fashioned stitches- Frankenstein kind. And since I wasn't really sure what the wound looked like, I wanted to be extra careful when taking the old bandages off. Most of the sticky had come off and they peeled right off. It was not pretty. It's a good 6-7 inches long. In my professional opinion, it's healing very well. She is a quick little healer-that's a good sign. I would have taken a picture, but I thought it was best just to get a clean dressing on and go about our business.

The past few days have involved logistical planning. In the past few years, I've gotten used to juggling 4 kids and their activities. My house is usually messy, sometimes out and out dirty and generally chaotic. I can mutitask and get the kids to multiple locations at the same times. But I cannot be in two places at one time. For the next 8-10 months Lily will be hospitalized for a minimum of 3 days every 21 days. Then on days 4 and 5 we have to go back for more IV outpatient treatments. Before, after, and during treatments she will get IV fluids and her vitals will be monitored closely. Days 6-21, I give her oral Mitotane(to kill the adrenal cancer cells) 4 times a day and shots to help boost her bone marrow. Day 22 is Day 1 again and we start over if all her 'counts" are good. If she gets an infection(I am told she will) we go back to the hospital until she is better. If her white blood cell counts drop, we go back. Every cycle we do a hearing test, an ECHO(heart) and lots of bloodwork. We will monitor her hormones and she will have to be on hormone replacement therapy. She won't be allowed to eat fresh fruits and veggies during treatment- the bacteria could make her sick. Even the bacteria that already lives inside her will make her sick. The house will have to be extra clean, we will have to wash our hands constantly. We will have to wear masks at the first signs of sniffles or coughs. This really puts our bout with pin worms to shame. All the while I have 3 other little people who need me too. This is going to be tricky.

1 comment:

  1. You and Phil can do it Jen! God gave you Lily and her sickness because he has faith in you and so do I. Do not be afraid to ask for help! I wish I could be there with you and for you! I am in prayer!!!!
    Many hugs for all six of you,


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)