Homeward Bound

The work is now complete and we are enjoying Christi's favorite place at CHOP, the gorgeous library. We have a few hours to kill before our flight home so I thought I'd update with the news.

unfortunately, the scans were not as we had hoped and prayed. Since the four weeks have passed, she now has increased cancer in her skull and liver. (I personally felt the MIBG scan remained unchanged, but Dr. Maris didn't call it that way.) The areas of disease in her: legs, ribs and pelvis remain the same. The CT scan shows new nodules in her lungs; however, that is most likely due to infection of some sort and should work itself out. (It didn't show up on the regular Xrays.) It appears that her disease is now back to where it was before she went into the BSO/LPAM trial in mid-May; not the place we prayed she'd be. "It definitely wasn't a homerun for Christi," Dr. Maris said regarding BSO/LPAM. Surprisingly enough, her bone marrows were the best they'd been in a long time: "negative biopsies and positive aspirates (less than 5% each side)". Like Dr. Maris said however, those results most likely aren't accurate and won't be conducted when she's schedule to return in August. The MIBG scan shows she has a lot of disease and bone marrows just grab a small sample in a large ocean.

Dr. Maris sadly informed me that the options for Christi are very limited. Chemotherapy hasn't worked, radiation hasn't worked, antibodies haven't worked, etc. He feels that because she is still feeling so well we should ride this train as long as we can until the fork in the road comes and there will be a fork in the road. Putting her through more high dose chemo isn't going to give her a good quality of life and is very hard on our family so he believes continuing with the plan to start Fenritnide is the best option, even if the responses aren't promising. He also informed me that even though the word on the street is that this new powder formulation of Fenritnide isn't working, they are seeing some responses.

The Fenritnide was supposed to arrive yesterday; however, at 4:30 PM Tuesday it still wasn't here. (I learned the plane broke down and it was delayed; ugh.) miraculously, it arrived this morning so she had her first dosage and we can fly home tonight. Christi said it smelled like cat food, but it tasted okay. (Mr. London, Christi said to tell you to make that a "negative one" on your "yucky medicine scale". I have the large canister of the drug packed on ice from the pharmacy (airport security ought to love me today, smile) and I'll give her another dosage when we get home tonight. Thanks for your continued love and prayers. I'll post some pictures from this trip tomorrow.

Shayla - Mommy and Christi will be picking you up at Grandma and Paw Paw's before bedtime. WE LOVE YOU, sweetie!