Chronicle of a Stem Cell Transplant (and on through to the other side)

Tuesday, April 28, 2009

Sorry, Andy, I wouldn't call it exciting.

Yes, I'm still waiting for the SGN-35 trial to open. That's not to say that there hasn't been a lot happening. I am grateful to have a team who is working very hard to get the trial here ASAP despite a whole lot of small-print finagling which is necessary but delaying my treatment.

While the delay and subsequent rescheduling of all my tests from week to week is a challenge, I feel lucky that I am not very symptomatic and therefore able to ride out this wait. It also makes a huge difference to have regular and effective communication with those managing my care. It allows me to conserve my energy and focus on being as healthy as possible for the start of the trial.

When we went to Montreal last spring to begin the MGCD 0103 trial, this was not the case. Information and adequate care there were not easy to get. At the root of these problems was poor communication and a lack of accountability. While it makes me all the more grateful for the care I am receiving now, I can't help but wonder why it isn't the norm rather than the exception.