What a Pain!

Everyone loves when Grandpa visits!











Thanks to many who have emailed with their own experiences and also to Dr. Maris, we are now "trying" to keep ahead of the pain, however not always with success! It seems every 12 hours there is an additional area of pain (nonstop headache, neck, throat, back, arms and today upper legs and pelvis- indicating widespread disease in her bone marrow to us). She tells us it feels like the bone pain she gets from the Neulasta shots which indicates to us that the disease- located in the bone marrow in every bone in her body is pushing out her bones expanding them and causing this pain. The pain is definitely increasing as she's now breaking through the dilaudid (a narcotic). She's also becoming more and more tired. I cannot believe how rapidly this "freight train" is now moving!! A week ago she was pain free! Without a doubt, this has been the most difficult week of my life and next week will be even worse having to be away from her.

Despite it all, she's happy and has a great attitude! Shayne bought Power Point for my computer this week to help me improve my teaching. She sat on my lap letting me "teach" her what I'm planning to utilize for my first Heidelberg class this semester as we pretended she was one of my students. Afterwards she asked many questions about how to set it up; we did a few slides together and then she mastered it! Currently, she's working on "Christi Thomas by Christi Thomas". I'll see if Eric's able to add it to her website or something, somehow for anyone who'd like to check it out when she's finished. Her animals ones, which include great facts, have also been fabulous!!

Today a dream that she and her Great Aunt Marty have been talking about for three years came true. She wrote, produced, directed and had the star role in a homemade video movie "11 German Shepherds". The 50 minute drive to Jeff and Marty's was very hard on her- both ways (car sickness and the headache issue) but I'm glad we did it. The video came out great: six scenes with all of us in goofy roles; it was a lot of fun! We all have great memories!

Director Christi goes over scene 4: The Dognapping

Thanks to Aunt Marty and her 11 German Shepherds!

Paw Paw applies make up to Shayne- a villian








Our plans continue to be up in the air and with the pain increasing nearly hourly in the back of my mind I keep wondering if "this is it". I know of many parents who didn't think their child was "that bad" and then suddenly they were gone. Losing her while I must be at work next week is one of my greatest fears. (I am three sick days in the hole, ugh!!) Weeks ago airline tickets were booked to get Shayne and Christi to Philly on the 29th (Tuesday) and home on the 30th (Wednesday). Now I'm wondering if she can make it until Tuesday. Additionally, we're talking about possibly having Shayne drive her there earlier instead of waiting until Tuesday to fly. Traveling nine hours will be no picnic as it was hard just making the 15 minute drive to school with her each day this week (car sickness and the horrible headache). We know they will not return home on Wednesday as they're planning to take the train up to NYC on Thursday to make the consult scheduled with Dr. Kushner at MSKCC. I have scheduled them a flight home from NYC on Thursday, but I doubt that will happen either as I'm hopeful treatment will begin back at CHOP on Friday- if not Wednesday! Should they drive or fly? Can she make it until then? How bad will the blood counts be? How bad will the MIBG scan be? Is treatment even an option? Can Dr. Maris call a "Hail Mary" to give us more time with her? Can I fly or drive to the east coast on Friday after school to spend the weekend with them? Should Shayla go too? Time is ticking and Shayne and I need to figure out the best things to do, while also taking care of Shayla's physical and emotional needs. (I took her to the doctor's this morning as she once again has another nasty ear infection.)

As always, your prayers and compassion are seeing us through! Thank you!!

PS: A HUGE CONGRATULATIONS to my friend Madeline who will graduate with her Ph.D. in Teaching and Learning from Ohio State University tomorrow!! We both took our first class together years ago and I am so happy and so proud of this amazing educator for working so hard and completing this incredibly difficult endeavor!! You rock, Madeline!!!