Journal Entry


Thursday night, August 14, 2003

Penny candy costs a nickel.

Water cost a dollar.

Laughter is still the best bargain.

Hello family and friends from Philadelphia, Pennsylvania where we are THRILLED to be OUT of New York City and with FULL power tonight!!!!! Thank you, Lord!!! This morning I sent you an email that we were leaving the city today so I wanted to update you with what happened since I emailed you all this morning:

Earlier this week we had been planning to take the train to Philly out of Penn Station; however, when checking in to it it was too expensive. I told Shayne to just take Christi and I would stay back in NY with Shayla. (Boy am I glad he didn't listen to me!) I sent an email late last night to the hospital explaining that we had to leave for Philly today and could we start her chemo as soon as possible. Therefore, all was waiting for Christi when she and I walked in about 8:10 this morning!! (Yippee, MSKCC!! They are so fabulous!!) After her vomiting episode (which she claimed was my fault for making her oatmeal when she really wanted spaghetti for breakfast. She doesn't associate the daily episodes with the chemo. so I left her at the hospital with Jessica's sweet Mom and ran to the grocery store where I bought her two spaghetti tubs which she ate both by 8:45 AM. What do I know?!) Anyway, we ended up finishing Christi's chemo by noon and then she and I picked up Shayla at preschool while Shayne got the van out of parking after taking Shayla to school and loaded up our many things to remove from our room at Ronald for our break back home. (Boy am I glad he did. Our van is full and I do not want to go back to NC for a very long time despite my love for that great city!) Shayne was waiting for us at Ronald and we drove out of the city in it's usual heavy traffic just after noon. (YES!) We drove in very heavy traffic all the way to Philadelphia arriving after 3:00 PM. We went straight to the Franklin Science Center (included in our COSI membership) and the girls had an enjoyable time playing and discovering even though Christi continues not to feel very well. Next we drove around the Hospital area so we would know where to go tomorrow and we wanted to check out the Ronald house - which we've heard is in a bad part of town, but we couldn't find it. (We'll try again tomorrow.) About 7:00PM, we checked into the hotel, where they upgraded us to a huge suite, and then I flipped on the TV hoping for some cartoons for the girls and instead saw what was happening around the country. Oh my!!

This is really odd as Shayne had been asking God to give him a BIG sign if we should treat in Philly, New York or return to an Ohio or Michigan hospital that participates in NAT experimental treatments for neuroblastoma. He kept saying, "Angela, our luck is changing!! This is the sign I have been praying for." Then he'd joke, "Sorry to have bothered 50 million people, but I really needed a HUGE sign of where to try to treat her next." I don't know what our meeting with Dr. Maris tomorrow at 9:00 AM will bring, but I too am feeling really good about being here in Philadelphia now. As you know we have been very reluctant to subject her to MIBG. We really want to try everything else first due to the damage which results from MIBG and the fact that there are more chances of it NOT working instead of working (60/40). And 40% who respond, it doesn't mean clear or cure, just response. MIBG is considered palliative care - to extend life. Anyway, when Shayne listed a few things he wanted to discuss as possible treatments for Christi with him (about 3-4) Dr. Maris emailed back that we would discuss all of those treatments and he had some others too. (Yippee! I think this is good he's not simply a slam-dunk into MIBG treatment but that he'll really do what's best to try to cure her.) Shayne met him at the NB conference in Chicago and worked out with him at the hotel's fitness center while Shayla slept in her stroller. Shayne thought very highly of him.

While it had been hard for us to accept Dr. Kushner saying about a month ago that we're just about done with everything MSKCC can offer us and we should start contacting other places that try other experimental things and realizing that we would soon not have an oncologist looking out for us and we would be like so many others "on their own" but when Dr. Kushner basically repeated that to us on Monday I was okay with it now. It didn't upset me this time. Shayne's done a fabulous job of researching this baby and he's not afraid to pick up the phone nor to send off emails so I'm okay with that now. The fabulous librarian at Children's continues to help him with his research gathering the articles and sending or faxing them to us. She's definitely an angel on earth. The only thing we haven't tried that MSKCC has yet to offer us is the Phase II Arsenic study. Dr. Kushner said that there is a place for that, but Christi's not yet at that point. Hopefully, this new chemo that she's on will do the trick and allow us to continue to marching on, but we need to line up our next steps assuming that this chemo is going to do anything that the others haven't done previously.

So in closing (so sorry this was so long!) we are safe and sound in the hotel with full power and we hope you all are doing okay and have power too!!! I knew some of you would be wondering if we made it out of the city or not so I wanted to put your mind at ease. (so sorry for my rambling). We're excited about tomorrow's meeting and hope to have a plan that we feel good about by 10:00 AM tomorrow. We're also going to beg them to give her her chemo at CHOP and to de-access her port so that we do not have to drive back into NYC tomorrow like we had planned. I can only imagine what kind of mess that will be. I'm sitting here watching the news and they just showed a scene from an Upper East Side bar just a couple of blocks from Ronald. We feel so blessed to be here in Philly tonight! Praise the Lord for getting us out of NYC today and please take care of all of our friends back there. I know they're miserable. I'm very concerned about them and wonder if they're doing okay (nurses, friends, patients, volunteers, staff, etc., etc., etc.). We love New York and our wonderful friends there!! God bless them!!

Goodnight! Thank you! We hope to be in Ohio in 24 hours and to see many of you very soon!!!!!!

With love, thanks and gratitude, Angela

Christi's Joke Today: What does a tiger say when it meets someone? (Nice to "meat" you. Grrrrrrrrowl!)

Of course my Mother summed it all up better in her email: The Lord is looking after Christi and her family. Thank you Lord! They left New York City around noon today (about 3 hrs before the blackout) Christi has an appointment with a doctor in Children's Hospital in Philadelphia Friday and they decided to go the day before and stay overnight. They were also thinking of taking the train but didn't due to costs. Praise God! They called to say they were okay and wondered about us. They were very thankful not to be at Ronald McDonald in NYC tonight (10th floor - no air - no lights) They had packed the van to come home. The plan was to go back to NYC Friday after Christi appointment, have her last chemo for this round and head home for 2 weeks. Now they will try to have her chemo done at Philadelphia as well as her port de-accessed and then head right home for Christi's break while her blood counts recover from the chemo. Hope all of you are safe. We only had slight power loss for a little bit.

God's Blessings, Carolyn

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