Chemo, Ashes & Science
A nearly identical experience as yesterday- morning nausea followed by Zofran to help calm it followed by a smooth day of chemo at CHOP’s day hospital. Dr. Maris stopped by and said that it was obvious that she responded to the chemo; however, he wants to scan before the third round. “Just because she looks great on the outside doesn’t mean internally things have also improved.” I’m confident they have, but it’ll be nice to get a clear picture (well as clear as an MIBG scan gave provide) on Friday, March 16th. It is of his current line of thinking to hit her with more chemo beginning March 20th. He’s particularly eyeing the harsh carbo/VP-16 chemos next, but we’ll need to watch her platelets and hope that she can continue to make them on her own. (The etoposide is very hard on platelets.)
He believes we picked a good day to return to Philly as she should soon start to go downhill and her nadir should hit around the 8th of March. (The day we fly back here.) Her ANC will go to zero, but she shouldn’t have the mouth sore problems which result in the inability to eat to the severity she did last round as they’ve cut the dosage by 50 percent. Without a fever, she’ll escape a lengthy hospitalization so we are praying for that and we know she'll need transfusions again. (She does so much better when she’s living in this loving and wonderful Ronald McDonald House and not hospitalized.)
I did express to him that Christi wanted to talk with him about the “dreaded G shots” like she inquired about with me this morning, but she was too shy and wouldn’t share her feelings with him when the time came- so I did. I asked if I could bring her to the day hospital each day to get her “G” through her port instead of having to get a shot since we’d be living just down the street. He said he was thinking of something and he’d get back with us.
Soon he returned and told with me that Neulasta will do the same thing and it's only one injection (as opposed to the 14 doses she received last month). I shared with him that I thought that was only for older patients and he said they’ve run the clinical trials and that is about to change. Currently, it’s only given to patients who are above 40 kilos. (Christi’s currently 30 kilos.) It is given 24 hours post chemo. (Shayne will give it to her Saturday afternoon.) He told me that it is very expensive ($4,000) and he knows that our insurance company hasn't been the best about paying what they should, but that's out of his control. What he can tell me is that it is safe and it is effective. I agreed that we wanted to do it. He told me that I'll just need to sign a paper saying that it's not for pediatrics, but that I want Christi to have it anyway. Let's just say Christi was incredibly happy to learn that there would only be one shot.
After her chemos were done dripping, a Sister came by and gave us our ashes for Holy Ash Wednesday. Then we were off to the Franklin Institute. Christi asked me if it was Phildelphia's COSI. I told her yes, but once we were there we soon learned that COSI really puts it to shame. We did have a wonderful time and the museum is really special, just not the country's best like we're spoiled by. Christi continues to feel very well right now - of course like I told Shayne today, "With Traci and Jenn catering to every need and whim, how could she not be feeling well?!!"
Tonight brought "Vets' Pes" at Ronald and Christi really enjoyed the two doggies - (OK, Traci and Jenn did too.) Tomorrow should be a repeat of today- chemo and an excursion. God is good!