Good news on Friday the 13th!!

Great trip to Boston yesterday - what a difference a week makes!

A flurry of preliminary tests - labs, EKG, cardiac echo, chest X-ray, and another bone marrow biopsy..............and Ryan is eligible for the CD22 antibody clinical trial!

Dr. Steensma seemed genuinely excited that Ryan was able to get into the trial.  The number of subjects is limited (I'm guessing it's probably because the amount of the antibody drug is limited at this point).  Ryan will be in Cohort (study group) 16.  The dosage is higher in each cohort.  My understanding is that there are three subjects in each cohort, and 3 medical centers - Johns Hopkins, Mass General and Dana Farber - participating in the study.  So for an opening to be available right when Ryan needed it was a long shot.

To explain how the drug works, Dr. Steensma drew a diagram that I will try to replicate here......

                                                                 TOXIN
                                                                       I
                                                               antibody
                                                                    {   }
                                                                      II 
                                                                    cell
                                                              cellcellcell
                                                         cellcellcellcellcell
                                                              cellcellcell
                                                                    cell

So....... the  II  represents the CD22 molecule on the surface of the cell - except there are LOTS on each lymphocyte.

The antibody - {   }  - is like a puzzle piece that fits perfectly onto the CD22 molecule and locks onto it.

The antibody is coupled with a molecule of toxin  - meaning that the toxin is also locked onto the cell.

As lymphocytes covered with the CD22 molecule also become covered with the toxin, the body recognizes the toxin and removes it from the body, destroying the cell along with the toxin.   From what I have read, CD22 is also present on other cells in the body in very small amounts, but the highest amount is on B lymphocytes, and it's especially high on some malignant lymphocytes like Ryan's.  An "abundance" as his oncologist puts it.

Ryan will go to Boston once a week to have his blood tested to make sure his blood counts are high enough for another dose and to check his liver functions.  Since the liver is responsible for clearing many toxins from the body they are seeing that patients occasionally have some transient liver inflammation, in which case they delay the next dose for a few days to a week.  This sounds significantly less toxic than traditional chemo.

If the labs are OK, they prep the drug, which takes about 2 hours, followed by a 1 hour infusion.  Then home until the next dose a week later.  There will be marrow biopsies every four weeks.  This will continue for 3-4 months.  We start on Monday.

The results they have been seeing with this treatment are very encouraging, and Dr. Steensma is optimistic that Ryan will be in remission or at least have the tumor under control enough to proceed to stem cell transplant at the end of the treatment in 3-4 months - which would put the transplant in October or November.  He will also need at least one more cycle of traditional chemo for CNS treatment before the transplant.

Sean's swabs are somewhere over the Atlantic right now as Shauna flies back to the States and should be tested next week.  Meghan's and Shannon's are in the lab. 

VERY encouraging news.  From a selfish point of view, it's nice to have some predictability so I can plan for the rest of the family.  Ryan also seems encouraged by the plan.  Although he's not relishing the idea of monthly marrow biopsies (they are getting more and more painful) - he figures every 4 weeks is better than every 2 weeks.  And he's relieved that it is all outpatient.

Many thanks to April Newman for getting the girls to camp.  And thanks to Julie Andrew for volunteering to pick them up from Chinese camp on Monday. 

Needless to say, we've pondered lots of aspects of life's adversities over the past few months.  On our drive to Boston, Ryan and I had a chance to talk about this.  Why me?  Why us?  What are we to learn from this?  Faith kind of requires us to believe that there is a higher purpose in all things.  Although we've all had some of the "why us" and "why Ryan" moments and moments of anger, it's surprising to find that my main emotion beyond fear is gratitude.

Gratitude for a son with such inner strength and optimism.  For a daughter-in-law who has shown incredible resilience and strength.  For my other children who haven't hesitated to step up and do whatever is necessary to help Ryan even at high personal cost to their families & careers.

For people at all levels of the medical system who have sacrificed their time and energy to develop knowledge, skills and compassion to serve others.  Especially those "geeks" who toil away in labs and in the mysterious world of molecules!

For neighbors, friends, family and church family who are so supportive. 

Even strangers like the team at the collision repair center who fast-tracked my car repairs so I could have my car in time to go to Boston.

We feel the blessings every day.
---Barb