Heading to Philly
Eden and I are heading to Philly in the morning with the wonderful Capt. Jack. Based on the email from Pat B from CHOP it will be a very busy week. Because she just had a Bone Marrow biopsy we will be able to skip that this time but she will have to have a CT Scan, Echocardiogram, Labs, MiBG and then she will be admitted on Wed for the PK Study. It was optional for us to do the study but i couldn't imagine not doing it if it helps them learn anything about the drug or disease. She will love being able to stay and play at the Ronald McDonald House this time because last time she was admitted right away and not allowed to go back because of the radioactive status. She will be released from the hospital sometime Friday and Uncle Jack will fly in to get us on Sat morning. I know that tons of our NB friends have done the ABT-751 and we welcome any tricks or tips you have for us. I have been trying to read as much as i can about it but there is nothing like living it.
Rourke is going to stay here in Columbus to care for Riley and Sophie (Riley and Eden's Dog) and Riley is very excited about showing her off to all of his friends at Dads. Rourke and I will have to do some trading off over the next few months so neither one of us has to miss to much work . We will making a lot of trips to Philly with this new drug as everything has to be done there as part of the protocol. We both agree that Riley should go to Philly at some point but because she will be inpatient for a few days this trip its not the right time. We will be going every 21 days for the next 3 months and then every 42 days thereafter. She wont have to be inpatient for any of trips except this one so there will be plenty of opportunities for Riley to go.
The kids got to go to Boo at the Zoo last night and as always Eden said it was the Best day in her whole life! I love hearing that... They had a blast and Eden pretty much ate the whole time. When she was very sick with this infection she lost 4 lbs and was down to 38 pounds but between a new appetite stimulate and her feeling so much better she was back up to 42 pounds on Friday at Clinic. Her counts were : White 6, Hem 12.4, Platelets 33 and her ANC was 2940. We expected to see her ANC drop once she stopped taking the GCSF shots and her Platelets seem to be holding steady and moving up albeit slowly.
I will try to take lots of pictures while in Philly and update the blog often.