2 Months & 3 Days - July 10th

Dr. Zackon called today to say that he was conferring with the oncologist and transplant doctor in Boston. There is a "clinical trial" (a research study in which subjects are given unproven meds which they believe may prove to be effective) that may help Ryan. In this case, the trial is using "targeted therapy" of antibodies against CD22 - a molecule which Dr. Zackon says Ryan's cells have "in abundance".

For those who are interested, there was a cover story in Sunday's New York Times about a researcher who had a relapse of his ALL and his colleagues were able to identify a characteristic specific to his tumor which resulted in successful similar targeted therapy (but with a drug whose side-effects, etc, were well known).

The CD22 study has limited capacity for patients, so we don't know for sure if Ryan will get in. My understanding (for what it's worth - this is obviously a complicated disease to treat!!) is that the original plan with ALL is to give blasts of chemo, then allow the body and blood counts to recover and give the next blast about 3 weeks later. On this plan, Ryan is due for more chemo this week. They are waiting a few days to see if he is eligible for the Boston study. If not, we'll proceed with standard chemo which is keeping the tumor in check but not getting rid of it. Then in a month or so after he has recovered from this blast, he may be able to go on the CD22 antibody trial.

I like that they have been able to identify a specific characteristic of his tumor cells which may respond to targeted therapy. The down side is we don't know how much is known about this drug (the antibody) and its correct dosage or side effects. But what choice do we have?  We're going to go for it and hope it provides the miracle we've all been praying for.

We're waiting for the call to tell us whether we will be going into Albany Med for the intensive therapy designed to give enhanced CNS (central nervous system) coverage with high dose methotrexate and some other meds that necessitate Ryan being monitored closely, or off to Boston for the clinical trial and whatever testing and monitoring is necessary in the trial.  Doing the laundry, making sure there's milk in the fridge, and deciding who I will need to call for help with the girls each way.

Ryan is not thrilled with the prospect of being back in the hospital - even if it's only for a few days.  Can't say I blame him.  Even without being pumped full of chemicals and having frequent blood tests and painful biopsies, hospitals aren't fun places to be.  Much better nowadays with technology to keep in touch and entertain.  But hospitals are hospitals.

On the home front, I'm scrambling to get my share of the Youth Conference (a 3 day gathering of about 200 LDS teens from this half of New York schedule for July 26-28) preparations done so that things will go smoothly and others can step in if I need to be in Boston.  A special THANKS to Sam Andrew for volunteering to run the talent show at youth conference - that's a huge burden off my mind!!!

The girls have Chinese Camp next week from 9 - 12 Monday thru Friday at Ballston Lake Elementary School.  If I have to go to Boston, I'll be asking for favors from my church friends who live out that direction to get the girls to and from.  MeiLin has taken 2 twelve week on-line courses as part of this program and at the end of the summer will have the equivalent of 1 year of high school language study in Chinese.  Kaia likes the calligraphy and the food and the Tai Chi, but isn't terribly interested in the language!

Off to bed with my head swimming..............
---Barb
PS to Sean - after clicking on "New Post", if you click on "compose" a tool bar comes up and paragraphs (you know - where you use the "ENTER" key) survive to the preview and the posting steps (I hope...)!!!