Friday, February 01, 2008

Our plan

As I sit at Erica's dining room table in Medford, watching her, Samina, Katie, and Addie pack up boxes full of books and pictures, I have to admit that I thought I was done with blogger.com. But here we go again...

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. I don't know. It seems that the overwhelming concensus is that I remain in NYC and finish my degree. Although I recognize the logical and practical side to this decision, my heart is broken to think that I will not be with her to play cards all day or be silly all night or just be together period. I know that I will be back for spring break and long weekends and as soon as school is out, but I must admit it will be strange to read about updates on the blog instead of posting them. But as arrogant as I am in inflating my importance, my Mom is amazing and everyone will chip in as before and I will rest easier. I look forward to the return of Nurse Bossy Bessy and Jamie spooning in her hospital bed with her! Adam already threatened to bathe in Purell to gain entrance to her company and I couldn't be more pleased. I will be jealous of all the yummy food she will have with our family nearby as my aunts are amazing chefs and my Mom IS the meaning of homecooking--well Chinese style.. MMmmm!

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.

15 comments:

Carol Gillespie, AADP said...

HI Jaci, Your mom emailed me yesterday to tell me that Erica has relapsed so I immediately faxed over a new search request to the HK and China registries. I received a report from HK today, who should I send it to. I can email it to you, Erica or your mom, just to have on had. Once in CA, I can send it to the new TC. I need to do what I can to help, in any way. Call me if you want to talk about the searches or anything. 800-593-6667, 415-515-5334 cell. Carol Gillespie, AADP

Christine said...

Hi girls,

The journey ahead is going to be rough but know that you can count on us to be there for you! We'll be at your mom's this weekend to get your room ready! BIG HUGS!!

Christine, Clare, Auntie Julie (and of course Jeff and Jonas)

Kent said...

Hi guys,

I just wanted to let you all of you Murray girls are in Joyce's and my thoughts. Please let us know if there is anything that we can do. We will be in the NYC area at the end of month and will be in touch as soon as we can.

Kent

adam said...

I'll be there with my Purell cologne from February 24-25.

artineh said...

I'm willing to bathe in purell too. I'd love to come visit soon.

And I say DANCE, Erica, Dance!

My entire family is thinking of you and wishing you a full recovery... I'm going to look forward to a celebration yet.

love you,
art

Clif said...

Thinking of you guys.

Anonymous said...

I will keep you in my prays! You are very stong and can do this!!!

sandy said...

Something came into my head today to see what was going on, Erica. I haven't checked your blog for months. Please know that there is a person at Occidental thinking of you, and knowing that when you come out the other end of this, you will be even more special than you were going into it. Take care. And let me know if I am needed for anything.
Sandy Cooper (Your old conlaw prof)

James Fowler said...

Dear Erica, Jaclyn, & Judy,

We are so sorry to haer of your relapse. You have all our prayers. We hope to be able to see you when you get back to the Bay Area, and let us know what we can do for all of you.

Love,

Jim & Lillian Fowler

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MP said...

I am going to be in the Bay area as I always am, so at least I will be able to see you from time to time. You are truly in my thoughts every day. Love you honey!

Emily said...

Hi Jaci,

I'm a distant friend of Erica's from Oxy and I've been following her blog closely since the beginning.

Is bone marrow still a possibility if there is a match? I am a registered bone marrow donor but I don't know how the system works. So I've requested a donor kit from AADP, just in case?

Also, in terms of keeping communication with Erica during her quarantine...there's a program called Skype. Have you heard of it? It uses the internet connection to allow video-conferencing internationally for a small fee. It's free in the US. It's a pretty awesome system to keep facial contact with friends and family that can't come visit. Check that out, it could be an option.

My love and thoughts are with Erica, you and your family.

Emily

Carol Gillespie, AADP said...

Hi all, just a reminder, if you are already in the NMDP Registry you don't have to register again. If you think you may have registered, but want to check to make sure, please call or email my office at 800-593-6667, asamdonors@aadp.org, we will be happy to help. If you have moved please, please call or email us and give us your updated information. I will need the city you registered in and your date of birth. This is critical, because if you come up as a donor and have moved, we may not be able to find you should you match someone in need of a transplant.

Anita said...

Erica:

Dear One,

Luke called to share your news with me so I looked up your blog. Keep your strength, surround your heart with absolute love.

Dance! Swirl, glide, shake your hips every day...and when you are too tired, I'll shake mine for you.

Laugh! Light up the earth with smiles and happiness from your heart. And when the laughter is only a tired smile, I'll add happy, peaceful warmth for you.


Cry! Let it out, river are cleansed by drops of fresh water. Clear it out, let me clear your sorrow.

Pray! Healing is merciful grace. I'll pray every day with you.

Please know that I hold your hand (like we did your last visit to Atlanta) with tenderness ready to help any way you need.

***LOVE***

Robby said...

Hi Cousins,
I happen to have a GIANT monitor (it is really really big..I'm not kidding) that I'm happy to hook Erica up with. It was actually a gift from my friend Shawn from last year, but I am sure he would be delighted if Erica uses it. Let me know if you want it after you settle back in the bay area?

We are all thinking of you!!

Robby, Emi, & Little Man Sean