I am sorry to not have blogged for a week.  Megan has been very ill.

The last I blogged was Thursday night, 11/19.  Meg was quiet and not herself on Friday and Saturday.   She attended a fundraiser for Jake Armacost on Saturday night, with Uncle GG and Aunt Loretta.  She told me that it was difficult for her.  Jake fell into a swimming pool when he was young and was saved, but he suffered catastrophic damage.  His family has been struggling to provide wonderful, loving care to him for many years.

Sunday night, Meg started with teeth, neck and head pain.  It became severe.  I stayed up with her all night and tried to help her through it.

Monday morning, we had to get Meg into the truck, so Dad and Uncle GG could take her to get her PET scan at Georgetown Hospital in DC.  The test was required as a step to get Meg into the next clinical trial for a medicine that we pray will help her brain swelling.  It was heart wrenching getting her into the truck.  She was so ill. Movement makes her sick to her stomach and makes the pain worse.  I dressed her in fuzzy socks and warm sweat pants and gave the guys her meds and medical information and they rode up the street before daylight.

I couldn’t go to the scan, because I had my own scan at GBMC, as a follow-up to my thyroid cancer surgery and treatment.  I called Cindy S. after they left and she helped me through my psychological ordeal.

While I lay in the scanner at GBMC, I knew that Meg was doing the same.  I spoke out loud to myself “I’m with you Meg.”

Later that morning, Uncle GG texted me and told me that Meg made it through the scan and was doing a little better. They were on their way home and Meg was sleeping in the truck.

When I came home, Meg was doing a little better.  She slept alot during the day and into the early evening.  Monday night, she had a rough time again.  She was up all night again.  Jerry and I took shifts sitting with her.  The pain medication made her sleepy, but never really alleviated the pain.

Uncle GG & I had to take Meg to Children’s National very early Tuesday morning for her final clinical trial requirements and administration of her first dose of oral medication for the trial.  She felt very sick and hadn’t slept much.  Her head was hurting bad.  She slept some on the way to the hospital, but the trip was long and it was rainy.  We wheeled her into the hospital by wheelchair, because she was so tired and in discomfort.

Tuesday was relentless.  X-rays, exams, EKG’s and bloodwork…she just wanted to get her first dose of medication and go to sleep to escape her pain.  She and I slept on the sofas in the oncology clinic, while we were waiting for her meds and blood pressure machine to take home.  We have to monitor her blood pressure while she is on the new med, because it can cause high blood pressure, which might have to be treated.

We finally left the hospital at 2:20pm.  Meg slept the whole way home. Thank G-d.

Tuesday night, Meg ate like a piggy.  Dad made Chicken A (his version of baked chicken pieces versus mine, Chicken B) and steamed veges and potatoes.  We were so glad to see her eat.  I can’t remember what Tuesday night was like…..I’m so tired. Forgive me.

Wednesday, Meg wasn’t doing well.  She felt very sick to her stomach and still had pain. It was a grueling day.

Thursday, Thanksgiving, Meg was very ill.  She couldn’t keep food or water down.  I stopped giving her the pain med that she was taking, because we suspected that it was making Meg’s stomach sick.  It is very strong and she didn’t have enough food in her tummy to handle it.  She never left her bedroom on Thanksgiving.  She finally ate 4 pretzels late that night and had some sips of pepsi.  She slept all night.

Friday, she was up and down.  Dad made biscuits and one was shaped like an M for Megan.  She loved it.  She ate that one and two other biscuits and drank a gallon of water.  She also had some fruit.  She slept for 5 hours during the afternoon and was pretty sick again in the evening.

Today is Saturday, 11/28/09.  Carli came to visit Meg and brought up some eggs, because we were out.  Meg sat with Carli and talked for a while.  She loves Carli so much.  They have a million memories together. Car went home.  Meg started feeling sick again.  Dad is sitting with her right now.

I know that this entry is difficult to read.  I just wanted to be honest with those who are following Megan’s story.

We are still fighting and praying that the new medicine helps.

We very much need our friends, our family and our community to help us through Meg’s difficulties.  It is hard here in our home and we find that it helps when friends just come and sit quietly with Meg or sit and talk with Meg, Jer & I.

We believe that Meg will bounce back.  Please pray hard for her.

Happy Thanksgiving.

Joanne

aka Megan’s Mom