No NYC = No Pokemon Stickers

When I called Shayne during my planning period today, I didn't realize he and Dr. Maris were already one and a half hours into their meeting. By that time Shayne had been trembling and had pushed himself up against the wall and cried his eyes out. So now it makes perfect sense that when I jumped into their conversation it went like this: "Angela, I've just gone over the menu of choices with Shayne and quite frankly the menu is extremely limited. I have evaluated her and despite all that's going on, she looks remarkably well." I responded with, "Tell me how my husband looks." Dr. Maris replied, "Well...honestly.....not as good as Christi does." HA HA HAHA!! Isn't that funny? I'm finding humor in little things tonight and now that I just hung up with Shayne I think he's finally going to try to catch up on his long overdue sleep. That incredible man amazes me EVERY day with his love for the girls and I! Before he left he hugged me and told me "I" was his inspiration (Oh, we are in serious trouble now, aren't we?! I think he'd best pick a new inspiration because I'm not holding up too well!) Christi joked that she likes her little bed in the back of the van so much that she's going to start riding to school that way. What a hoot!! Ya know what? I just may let her!

Today was the first time in months that Pat and Dr. Maris witnessed Christi crying in pain as she was curled up on Shayne's lap trying to get comfortable. Now that we got the pain meds figured out better, we can hopefully control it for her. (We had "mild" and "max" going on at home because that was in our possession, but now we have an "in between" which will hopefully help.)

With the goal of getting Christi back to where she wants to be- school, her treatment plan was decided upon: It's a chemo combo (6 or 7 different low dose chemos) which started today to try to halt the progression. Then: thalidomide, celecoxib, fenofibrate, etopiside, cyclo then add zometa maybe on Friday before driving home. It is an antiangiogenisis strategy. For pain control regular tylenol with oxycodine every four hours. Her current pain rating is 4 on a 10 point scale.

In addition to other tests tomorrow she "should" receive more chemo drugs which are more challenging to get and for which Shayne was told once again that insurance companies typically refuse to pay. She will still scan on Wednesday and our prayer request is that she doesn't have any brain involvement. (This combo isn't going to be able to cross the blood / brain barrier.) Our sweet, sweet, sweet friends at the UPenn Animal Hospital will let Christi visit tomorrow afternoon and since Shayne's never been there I think Christi will love sharing that amazing animal place with him. I hope she's feeling up to it.

During the 2nd hour long meeting with Dr. Maris today Christi was in so much pain that she couldn't leave Shayne's lap and she had to hear the adult conversations. She learned that she will not be going to NYC to consult with Dr. Kushner, which was planned for Thursday. She was REALLY looking forward to going to MSKCC and especially to the Nintendo / Pokemon Center because she had her money to buy some Pokemon stickers for this "Collect all 150 stickers from the Pokemon Sticker Series 1,2,3, and 4" Pokemon Poster the girls have had since they bought it there in 2003! (This poster is so old they actually had to put masking tape around the edges and across the back, but they still love to add little Pokemon stickers to it and Christi was certain she could get more for their poster there. They have about 25% of the poster filled.) Isn't it amazing what's important to cancer kids? I guess I'm glad she just doesn't "get it", because I do and it actually stinks!

Thanks so much for the kindhearted people who have showered us with love! My sweet neighbor has offered to overnight with me, a sweet Heidelberg Professor offered to teach my middle school kids for free so I could be with Christi, and the kind emails and prayers will forever be treasured. Your reward in Heaven will be great; thank you!! Goodnight!