Friday, January 27, 2012

Disappointment leads to confusion

Dr Basu called me a little while ago, Dylan's scans are stable. She then told me Dylan has HAHA. She proceeded to say that he is the first patient to get a HAHA, to which I replied "well I told you if anyone would it would be Dylan" She said that I was right and that we will test his HAHA again at the end of February. Until then Dylan is suspended of the Hu3F8 study :( Dr Basu said he must have a good immune system. I didn't know whether to laugh or cry. I couldn't show emotion in front of Dylan after I told him, I didn't want him to feel like he had failed. Ultimately I cried once I was alone. We were so excited about this study, so happy we finally started and now...all gone. My head is swirling with thoughts. What do we do now? Wait I guess, test in a month. Part of me wonders if Dylan being HAMA positive for so long and almost immediately and the same with the HAHA, is this why he remains stable? Is his immune system so good that it rejects these antibody treatments. Is there a connection with him remaining stable all this time?

I wish I had a crystal ball, I wish I knew when Dylan's cancer would progress, in a week? 10 years from now? Do we stay in New York? Do we go home? If we go home and he progresses can we get back into the USA to see our team at MSKCC??? I have no idea, honestly. We have come so far, new studies are in the pipeline, Dylan is not and never has been NED (No evidence of disease) If we go home where do we begin? Cain will be devastated again, Dylan's life may be in peril...I just don't know anymore. Big decisions, we have to talk with the team after his test in a month and see what they recommend, this will help our decision making. We re-apply for Visas in a few months which is also stressing me as it always does. I just feel empty, sick and confused. I am homesick but I cannot let that influence any decisions. We are set up here in New York and turning back now means starting all over again from the bottom literally. A place to live, jobs etc. I don't really care about that though, however I do care how that makes the kids feel. I also care that the main reason for being here is to try and save Dylan, get him treatment. Home there is nothing, no treatment options, no clinical cutting edge trials to try. Well I guess I just answered my own confusion right there, right here on his blog.

Home = No treatment & No hope for cure
USA = Treatment & Hope for cure

Ok well writing helped LOL. Guess we speak to the team in a month after the HAHA test and see what treatment options are available next. Thanks for listening. I actually feel much better now that I put this in writing and feel like I knew the answers all along.