A Step in the Right Direction…

Thursday, 01/14/2010, Uncle GG, Aunt Cindy & I took Meg to Children’s National for her scheduled MRI.  This was a very important test.  The doctors would use this MRI to determine whether or not they thought the clinical trial drug was helping Meg fight her brain cancer.  If the drug was not working, then the treatment would be discontinued….and we’d have to try to find another treatment option for Meg.  Needless to say, we were all on edge for the MRI results.

The day was long.  Meg’s pain has been so bad, that she has been taking round the clock extended release morphine.  It’s the only thing that makes the pain bearable and keeps her comfortable.  It’s a real trade-off, because she is totally non-functional on the morphine.  She will speak to you, while she lays in her bed, but she can’t really move around or focus on anything.  Her speech has been slurred and she has not been able to see clearly.  She needs assistance anytime she has to get out of bed and she needs help eating.  It’s scary.   Morphine is a tough med.  It reaks havoc on one’s body.

Meg didn’t want to be all drugged up for her Thursday clinic visit and MRI, so she told us that she did not want to take the morphine, but by noon, she couldn’t take the pain anymore.  We were in the lobby of the clinic, waiting for her turn.  Meg was laying on one of the sofas, with her pillows and favorite blankets….we never leave home without bringing some of its comforts with us.

The doctor was upset when he saw how miserable Meg was.  He put us in an empty in-patient room on the inpatient Oncology side of the clinic.  Meg rested, while we waited for the doctors and nurses to do their thing.

We were at the clinic from 11:30am until 3:35pm.  It was too busy and everything was delayed.  It didn’t really matter, because we couldn’t leave until after Meg’s MRI, which had been scheduled for 4pm.  We took Meg down to radiology around 3:30pm and they put her contrast IV in.  She’s a pro at needles now and barely winces….not necessarily something that you want to be good at….but, we are thankful that her fear of needles has eased up since the beginning of this journey.  They finally took Meg into the MRI room at about 5:25pm.  Aunt Cindy – Meg’s MRI Mom – accompanied her for the test.  We gave Aunt Cindy, Jer’s really warm bear blanket to wrap around herself during the test, because it’s super cold in the MRI room.

While Meg was having the test, I ran back up to the oncology clinic and met with Meg’s nurse, Debbie, to go over issues pertaining to Meg’s upcoming – and “highly” anticipated – wisdom tooth extraction.  Debbie was planning on emailing the oral surgeon an approval to move forward with the surgery and advising as to medication restrictions.

Meg’s MRI was finished at about 6:45pm.  Cindy & Gary stepped out, so I could help Meg change back into her clothes.  She softly whispered that she was scared about the MRI results.  I leaned down close to her face and looked in her eyes and told her that whether the results were good or bad, we were still going to keep fighting.  I told her that if they gave her really bad news, we were gonna say to heck with it all and go to Hawaii to surf a wave and we were going to go heli-skiing….that we were gonna do everything we could to live life to the fullest.  She smiled.  I told her that she was doing a great job and to stay strong and keep hoping.  The nurse came in and took out Meg’s IV.  We were OUTTA THERE…and on our way home.  There’s no place like home….

Arriving home felt good, but our minds played games on us, while we waited to hear from the doctors about the MRI results.  Thursday night, I was so emotional.  It was a long night and I cried some.  Our doggies, Roxy and Daisy, came to my rescue.  Roxy let me lay my head on her soft furry back.  She’s got such a sweet nature about her.  Daisy is just flat out entertaining….and continued to bring me toys.  Late Thursday evening, we ate a yummy casserole from our neighbor Jody B.  It was delicious and I had seconds, followed by 2 of her famous brownies and a warm cup of decaf coffee…my evening ritual.  Those brownies are amazing!!!!  I couldn’t get Meg to eat much – the day had been long and she ate pb&j on a toasted english muffin, took her meds and went to sleep.  The house was quiet….Jer was tired and fell asleep earlier than usual.  I struggled to relax and finally fell asleep.

Friday morning, 01/15/2010, I awoke and looked at my cell phone.  I had turned off the ringer…except for the medicine alarms that I had scheduled to remind me to give Meg her meds.  I saw that a call had come in from the hospital.  I phoned my voice mail.  There was a message from Dr. P.  He said that Meg’s MRI showed that her cancer had stablized and the test results were good overall.  Meg would be staying on the clinical trial. 

Thank G-d….the drug appeared to be helping.  We have so longed for some good news like this.  Granted, we still have a long road ahead, but a baby step in the right direction has been LONG OVERDUE!  We needed a dose of relief.

This MRI victory is bittersweet for Meg, because she is so drugged right now.  She does not really have a sense of relief.  Her senses are dulled.  We need to help her realize her accomplishment!  We need to help her celebrate!  She deserves balloons, cards, hugs, cheers and fireworks…. send the poems, the love, the special trinkets, the flowers….let’s make Meg feel loved and feel good.

The rest of Friday was uneventful.  Jer went to work.  I was tired and recovering from the anxiety of the MRI, which was now part of our past.  Meg was quiet and resting.  We all went to bed early Friday night.

Saturday felt like the first day of Spring…and a new beginning.  The sun felt warmer than it had in while.  It must be drifting towards its summer position….can’t wait for summer.  With the MRI behind us, we were focusing on Meg’s comfort – her body is so worn out from pain, medication side effects, stress & lack of sleep.  As if all of that wasn’t enough… we had to add a bruised back bone to the list. 

As I was trying to help her into the bathroom several days ago, I lost my hold on her and she landed hard.  Her muscles are so vulnerable.  Because of the impact, her back has been sooooo sore and she could hardly move without wincing in pain.  I felt and still feel terrible about it.  We had a wonderful massage therapist come to our house and she gave Meg a massage to help with the pain.  Thanks for the referral Aunt Cindy!

The therapist brought a massage chair.  We put it in Meg’s new Make-A-Wish room.  The weather was beautiful, so we opened the window and put the fan on.  The air was fresh and reguvenating.  Jer, the therapist and I helped Meg to the therapy chair and helped her position her body, so that she was comfortable and we covered her with a blanket.  Meg seemed to relax during the massage.  We believe that it was of great benefit to her – both medically and emotionally.  I got to sneak in a quick massage myself.  The therapy chair was awesome and I could’ve fallen asleep there….maybe next time.

Meg was more at ease the remainder of Saturday afternoon and evening.  She took a hot bath after the massage and napped pretty deeply with that fresh outside air in her room.  Uncle GG and Aunt Retta came to visit later in the evening.  They had dinner with us and sat with Meg for a long while.  We ate Jerry burgers—yuummmy!  Anyone that’s eaten at our house during the summer knows how good Jerry’s burgers are.  Meg ate some spinach salad, some burger, a frie or two and some apple sauce.  We all slept well.

Today, 01/17/2010, is a rainy Sunday.  Meg’s back and neck are still hurting and she frequently asks Jer & I to massage her.  Laying in bed, non-stop, is very hard on her body.  We are anxiously awaiting her wisdom tooth extraction this Thursday morning at 11:30.  It is our hope that she will be relieved of much of her pain, once those 3rd molars have been removed from the equation.  We pray.  We pray.  If all goes as I expect it to, she should no longer have to take morphine around the clock for pain and she will be able to get out of bed!  We pray.  We pray.

As I sit here and listen to the rain, I feel comfort.  The rain is relaxing…..going to chill the rest of today….and listen to the rain.  We continue to thank G-d for our daily blessings.  There are many things to be thankful for.  There are so many people in our lives who save us everyday. 

Love to all,

Joanne, aka Megan’s Mom