So, yesterday morning, Erica and I went to Dana Farber Cancer Institute to talk to her doctor to try to understand the whole situation and options from here. Turns out there are no options, so here's the plan: Erica is going to return to San Francisco and live with our Mom in Burlingame. She will hopefully get treatment at either UCSF or Stanford. By living in the Bay Area, our hope is that our family can all pitch in and help my Mom and local Cali friends can come more often, etc.
Medically speaking, if all goes ideally, here's the tentative plan: Erica is admitted into the hospital for induction phase. Since she needs to go into remission for a second time, it may take longer this time than the 3 weeks inpatient two years ago... we're thinking it will be 4-6 weeks to get her back into remission. Then she gets a break of about three weeks. She then returns to the hospital for the transplant for 3-6 weeks, and goes home for a quarantine phase of roughly 6 months. Now, let me explain...
For those of you who remember that she did not have a bone marrow donor match, that is still the case. However, two years ago, the only thing that would've been a better outcome than the chemotherapy is a perfect 12-point match. This did not, and does not, exist for her. So we opted for chemotherapy since she responded so well. However, since the leukemia returned, we now know that no amount of chemo will keep it away, so we have to go with the next best option. Since there isn't a perfect 12-point match, we are looking for the best mismatch. If we don't find someone that the doctors think is good enough, we will look at umbilical cord blood.
Interestingly, the cord blood only has to match at 4 points as the blood has a higher plasticity that will eventually grow to match the host. There is a search going right now for an appropriate match.
Another thing to address is the quarantine phase post-transplant. For the following six months, she will have extremely strict food restrictions and limitations on visitors. Imagine an infant: no immune system, no booster shots, and susceptible to everything. But the baby would have antibodies from the mother's breastmilk and Erica will have nothing. She will only be allowed to be around certain people to minimize chance of infection. We're already trying to devise a way to get a giant computer monitor and webcam set up so she will not be completely without her friends. :) however, we ask that for all those people who want to visit, that we just match it according to her transplant schedule--and we won't know this for some time. For now, we know that the first 4-6 weeks in the hospital trying to get back into remission will be lonely, long, and tough. That is a perfect time to come boost her spirits! As far as we know now, and I do reserve the right to change this, she will be inpatient from about Feb. 11th onward.
Right now, Erica is catching a flight home to SFO on Thursday night. After much persuasion, we have convinced Erica to follow through with her commitment to do a Russian dance at "Med Night" at Fletcher on Saturday. She was worried that she would run into people who do not know about her cancer returning, and also people who do. She was also nervous about how it would appear to others: she has leukemia but she's doing a Russian dance?? and to this, I say, DANCE!! I am 100% in favor of her doing all the dancing she can before having to go back to the hospital.. all in favor, scream AYE!
Also, she will be having a little gathering on Monday night of locals here in Boston who want to say goodbye and send her off with good wishes... not to mention a great time to let people sift through stuff that we are trying to sell/give away/or push! Trying to move all her belongings back to Cali seems to be expensive and unimportant, but I would be remiss not to mention that parting with many of her possessions is emotionally taxing too...
Lots of people have asked me what my plans will be with Erica moving back to NorCal.
Lastly, I'm sorry to all those people whose phonecalls and emails I have not returned as I will be honest: I just don't want to! :( Not yet.. but soon, ok?
Thank you all for the beautiful messages and thoughtful words.. I do hear/read them and they are so special.
Until next posting... peace.