Journal Entry

Monday, January 9, 2006

“I have not yet begun to fight!”

(John Paul Jones)

Christi & Paul Jones support the SE Tigers!
(December 2005)

I had planned to use the above quote to talk about the wonderful substitute teacher teaching my jr. high language arts students this week. (The awesome Paul Jones was MY junior high language arts teacher, Shayne’s teacher and coach, and just a wonderful, compassionate man and talented educator who helps me so much with my teaching!) But instead tonight the above quote takes on new meaning!!! (At least I can find humor in it now; that wasn’t the case early this afternoon!) First I’ll back up a bit!

Christi and I headed out after Shayne cooked us a fabulous lunch on Sunday. As we backed out of the drive, Christi said, “Look Mom! They’re both waving from the window!!” She thought it was very cool. I could only glance up and see Shayne holding Shayla up in his arms and their hands waving “bye bye” as I knew tears were pouring out of Shayne’s eyes and I knew mine would be too – if only I acknowledged them.

We listened to an audio book on the way to Cleveland. The flight was uneventful; we got a $15.00 room at Ronald - I should have known things were going too well! Today I awoke with a very excited Christi in my face at 6:30 am asking, “Is it time to go to the hospital yet?” I said, “Sure.” (Our alarm was set for 7 AM.) We arrived, waited, had her port accessed, lots of little details taken care of and then were sent over to the inpatient side to be admitted. After many tears from Christi and four pokes from three different individuals trying to get her IV inserted, the sweet Nurse Practitioner announced we were ahead of schedule!

Well, time ticked on and on and we just waited and waited. Finally, I asked what the delay was and our sweet nurse (Christi named her “Sweetums”) informed me that there wasn’t an expiration on her drug and they were calling Wisconsin to inquire. (That should have tipped me off, but it didn’t) So another hour and a half passed by and in walked Dr. Maris and Pat – our nurse practitioner. The look on their faces told me it wasn’t good news.

I said, “So we’ll get started tomorrow now, right?” Dr. Maris informed me that that is the new plan. Apparently, a pharmacist over the weekend thought she was doing the right thing by defrosting and preparing the drug. It was put in the refrigerator instead of the freezer. Dr. Maris said never in his twenty years has anything like this ever happened at CHOP. All 42 vials were ruined. He told me that hospital officials would be in to apologize and that I had ever right to be upset. I told him that when you live in the world of cancer you take disappointments as part of every day of life. Later I learned that proper action is being taken (and I’m willing to bet the pharamist is now working in a bar mixing drinks instead).

I said I understood and it was okay, but truly I was thinking that it just cost me an additional sick day and wondered about our flight home. I stepped out into the hall to whisper to Dr. Maris that as a surprise for Christi we had plane tickets for the weekend to fly down to visit Christi’s grandma and grandpa and that her aunt, uncle and cousins would be there and did he think we’d still make it. He said that the hospital mistake just cost us that trip too. He does not believe her blood pressure will be recovered from the IL and he doesn’t believe we’ll get to spend the long weekend in Florida as I had hoped. OH, you can’t even imagine my disappointment. I miss my Mom so much and Christi is so happy with her cousins!! I thought it’d be a great treat after the horror she’d endure. Darn in!!!!!!!!!! (At least I never told her what was planned. At the Ronald House last night she asked me why I had her swim suit packed and I told her that sometimes we can’t get a Ronald room and the one hotel has a pool.)

So trying to put all of that aside, knowing I couldn’t control that anyway, I reminded myself that one of the possible side effects of this treatment is death so perhaps today would be my final day with Christi. The hospital gave us “get out of jail free card” (Oh, I mean pass to leave the hospital for six hours) so we broke out of incarceration (Oh, I mean hospitalization) and went outside in the 60 degree weather. My first thought was to call our Philly friend to see he still had free passes to the US Constitution Center, but I decided that I shouldn’t bother him. Imagine my shock when we walked back into Christi’s room tonight and saw that the sweetheart stopped by with cookies from his wife and a card from his family!! And I must know where he got the incredible “” and “Christi Can” plastic bracelets made; unimaginable! (Thanks, Grants!!)

We bought a loaf of bread at a “Wawa” store and had a blast for an hour feeding the birds and pigeons on the lovely campus of the Ivy League school – the University of Pennsylvania. We wondered into a used book store where upon our entrance the store owner said, “I know you!! You’re from Ohio and you were here with your Dad!” (I had to wonder WHAT Shayne and Christi did that was so memorable!!) We also got matinee tickets to see the new Disney movie “The Chronicles of Narnia”.

Hopefully, tomorrow the drug will arrive about 11 AM (FedExed from Wisconsin) they’ll thaw the drug (properly, smile) and start the injection early afternoon. (I’m still hoping we’ll be on a Friday afternoon flight to Tampa, but it’s highly doubtful!) If the drug doesn’t arrive tomorrow, hopefully Wednesday. She is in room #3S21.

Sooooooooo Mr. Paul Jones and I met a couple of days last week to go over my objective for the students while I was away with Christi. Each time I asked him to please email me with updates so that it would be a smooth transition back and each time he made me blink away tears as he told me to worry about taking care of Christi assuring me he’d take care of things at school. I know my students are in the best of hands while I’m away. I just hope to be back VERY soon!!

Thanks for letting me vent!!!!!!!

PS: Christi’s pointe shoes are awesome! She is so proud! We went to Toledo one day after school last week. When the store owner showed Christi how to actually go up on her toe holding onto the barr; I teared up.

Christi’s Joke: What is the Macintosh’s favorite song? The Farmer and the Macintosh!!

What’s Next: Hopefully, the drug will arrive about 11 AM tomorrow and will be defrosted and injected over the four hour period. Her IV is in and her port accessed; we’re ready to roll and give this a shot! Her LDH was even higher today than it was on December 29th. Today it was over 1,300 – yikes!!!!!!! Bring on the protein fusion!!