"I'm Just So Sad"
Shayla was up at 4:15 AM to wish us off. (Boy how I love that sweet, adorable thing!) Christi woke up after a rough night with a numb face - mouth, nose, cheeks, etc. I picked up that dear, dear friend I'm not worthy of and off we went for the airport. As I drove into the village in complete darkness I wished it would have just been another sleeplessnight for me - a night when I drive in to that village to work in my classroom to help me cope. Unfortunately, we were not able to go to school today.
Sweet Shari was amazing help right from the very beginning - with Christi's first of many vomitting episodes for the day. (Car sickness just north of Republic.) Wheel chairs were needed at the airports as she not only looks horrible, but is oh, so tired. Shari couldn't believe the rapid decline from Friday either. It'shard to believe it's the same child - Christi Thomas!
Her counts were fine at 5.3 white, 150 platelets, 9.2 hgb. (low) with an anc of 2820. Nurse Practitioner Pat looked at her and said that she "Looks different than she did on Jan. 17th." When I asked her if her face situation could be anything other than cancer, she couldn't imagine that it was anything, but neuroblastoma. She did remind me that the one predictible thing about neuroblastoma is that it is unpredictible. She also told me that she "was worried." Christi's been so sleepy. Pat noticed she was whincing while eating because it was hurting so much. She complains of headaches, seeing double and keeps feeling "her bumps" which hurt to the touch.
Thankful was I to finally meet two of our wonderful support group families!! I've followed their little one's journeys with replased neuroblastoma for a long time as they captured my heart and touched my life!! Please lift them up in prayer! They are in great need too!! This disease is so horrible. I looked in their little precious eyes today and couldn't possibly imagine why they had to suffer with this beast - and their wonderful families; heartbreaking!
No room at the Ronald McDonald House and no room at the Penn Tower Hotel I was getting nervous about where we were going to spend the night. An amazing rescue from parents who would walk to the end of the world to save their little princess from neuroblastoma, but unfortunately don't have that option, put us up in the lap of luxuary! (Never before have we stayed in a 5 diamond hotel; it's lovely!) I guess only the very best for our Neuroblastoma Princesses!! (Thanks, friends!! Your little one is soooooooooooooooooo blessed to have YOU!)
Then it was back to Wood Center to learn of the LDH level and to have her port deaccessed - no such luck, it's still accessed! I asked the nurse to stop and not remove her port until I heard the LDH number. When I heard it from Pat I truly was shocked - from a very high 1,150 on Jan. 11th to 3,508 today. I'm sick, absolutely sick. I have never heard of any child having an LDH that high. (NB friends, please email if you can give me some hope. 3,508!!!! NO!!!!!!!!!!!!!!!!!!)
This is the indicator of the strength of Christi's disease - truly spinning out of control at a very rapid rate. Pat told me that my plans should include NOT leaving Philadelphia as planned for tomorrow. They anticipate admitting Christi tomorrow to begin some high dose chemo in an effort to help get Christi "comfortable". (When I started my morning off yesterday asking Christi's teacher to take lots of pictures because I feared it was going to be her very last day of school, I told myself - oh, come on, she'll be back. Now I think I may have been right.) After sharing the LDH level Pat told me that she is now more worried than she was just by looking at her earlier and she told me she'd pray for us tonight.
The treatment will be decided (or told to me) at 10:30 AM with our meeting with Dr. Maris. He doesn't want to make a final decision until the 9:30 AM MIBG scan, but at this time he anticipates using a chemo cocktail of carboplatin and etoposide. He doesn't believe she has the 4-5 weeks needed to get into a trial - she needs something hard and something NOW. When I questioned Pat on this combo she told me that there "may still be a benefit". (Christi has never had a response to high dose chemo and she's had VP-16 before. The carbo would be new - it's also a drug known for creating hearing loss.)
Shari has been a GODSEND!!!! THANK YOU, dear Lord! I've been able to run and get food, call Shayne, cry my eyes out and - hey, update this blog tonight! All things I could not have done by myself. Oh, how I love her so!!
With Christi resting in the waiting room with her eyes closed (One is nearly completely sealed shut at times - the right one. The other is buldging forward as well, so ugly.) I knew I had to tell her what was up. After complaining about her eyes and walking with them closed and me leading her today I told her, "Christi it looks like the cancer is spreading all over your head and that is why you are swollen and hurting so much." The precious 8 year old panicked and said, "WHAT? WHAT?? What do you mean?" I explained the best I could. Later tears were pouring down her cheeks. I wiped them away and told her that it looked like we'd be starting high dose chemo again tomorrow and our lives were going to be changed again. I told her that all decisions would be made out of love for her and that we would all get through this together. With tears falling (hers and mine) I asked if she hurt and was in pain, or if she was sad. She responded, "I'm just so sad."