Ways to help

Hi Everyone,
The support website that was started when Erica was first diagnosed has been updated. Please visit www.supporterica.blogspot.com to see the various ways that you can help Erica while she battles her way through this second fight against leukemia. If you have come up with your own way to help Erica such as a bone marrow drive or a fundraiser, please e-mail me at murphy_jamie@hotmail.com so I can add it to the support website.

Thank you!

Jamie

The Waiting Game

Five five-hour chemotherapy treatments finished and now the waiting game begins. So far, I am still feeling pretty good; minor complaints but nothing too awful. I've been blessed with super visitors and an attentive team of doctors and nurses. Thankfully, I've been sleeping as well as can be managed with the various nighttime interruptions and haven't had to take those mind-altering sleeping meds which really fog up my brain. My diet here is very restricted and it does suck to be tied to and IV pole, peeing into a plastic storage receptacle, and rarely departing from my 10'x15' room. However, the real fun is coming in the next few weeks: fevers, infections, fatigue are all expected as my counts go crashing. What little hair I've proudly resprouted over the last year will again be orphaned on my pillow each morning. Sigh, but it always could be worse. I could lack the funny friends who bring me goofy gifts, send me Youtube gems, and make sure my last days of hairdom are not taken for granted.

a few early pics from the hospital

Entering my ward. A sense of humor is paramount.

Lots of tests- from blood work to x-rays to CT scans to EKGs and echo cardiograms- to create documented baselines from which to monitor deterioration.

With low white-blood-cell counts (immuno-suppression), I have to don a Darth Vader mask whenever I leave my room. At least it's pink.

So far, I still feel great. Day one of chemo down.

Countdown Pictures!

Feb. 19, 2008

Thanks to Mom & Bess for the updates. I'm here in the hospital now, grateful for my amazing friends who keep me organized and happy. Today was an easy one physically, but a little difficult emotionally. I'm used to a doctor and medical team who try to spare me the mortality statistics and the grimmer details. Here, I've already noticed a different brand of bluntness that sometimes jars my sensibilities. I do however appreciate their candor and believe that I can better care for myself and make decisions if I have all, even the petrifying, information.

Otherwise, so far, there are more things Stanford Hospital has in common with Brigham & Women's Hospital than different. I have my own room with a bathroom, shower, and constant hum of medical equipment. You enter through a double-door system which attempts to reduce the introduction of pathogens and there are a half dozen vessels with alcohol-based hand sanitizers stationed around the room. Visiting hours are 24/7 and there is a cot here for my rotating roommates. We have wireless internet, TV, DVD player, and (soon) a Nintendo Wii. The walls are spartan and partially covered by medical nodes and wires, but I'm sure we'll do some decorating in the weeks to come.

But before the many posts to come, all about the hospital, here are some pictures of the time between relapse awareness and hospital admission/incarceration. I took my last days of freedom seriously, because I knew that not only would I be stuck in the hospital soon, but, far worse, I would be again stuck in a listless and sick body.

So, encouraged by my peeps, I danced a Russian jig,


went snowtubing,

had a party,


ate a farewell New England meal,


picnicked in the sunshine,


played Guitar Hero and Wii,


hung out with my family,

rode bikes across the Golden Gate bridge,


and yesterday, went sailing out on San Francisco bay. As my friend Josh wisely reminded me when I was whining about having to go into the hospital, these are the days for which I will suffer. In order to have another perfect afternoon in a sailboat with my best friends, that's why I'm here in the hospital. Here we go.




I

At the hospital

Erica arrived today at Stanford Hosptial (entourage in tow of course- Judy, Jonathan, Katie and me, Bess).

Photos to come. She is in good spirits and we are about to watch a movie. Treatment wont begin until tomorrow.

Mail time is always great. Please mail to the below address.

Stanford Hospital & Clinics
F Ground Unit, MC 5615
Erica Murray, Room F038
300 Pasteur Drive
Stanford, CA 94305

So far we have a great nurse, Jessica, and she was born in Canada just like miss E!

I will post photos and more information about what we have been up to later today or tomorrow. It includes video games, good food, sailing, and fantastic family and friends.

Barbaric

Barbaric – Barbaric – Barbaric! Those were the words the PA said to me after she had performed Erica’s bone marrow biopsy yesterday at Stanford. Jaci and Erica have both shielded me from being with her when she had one of these procedures done in Boston as they felt perhaps I couldn’t take to see my child having an instrument being drilled into her ileac (pelvis) bone. They were right. To see her face grimaced with such intense pain and hear her cry out loud with tears rolling out of her eyes is definitely not a sight a mother ever wants to see. I know now why they have barred me from the room when Erica underwent this procedure. I tried to fix my eyes on her rather than the long needle being inserted into her hip, jerking her into excruciating pain. However out of the corner of my eye I can see when the needle is being extracted, again causing her to bite hard onto my fingers to stop herself from screaming. The needle is inserted again for more blood needed for testing the cancerous cells. After this comes the really really hard part when an instrument resembling a type of drill that actually drills right into her hip bone to extract the bone marrow and some bone chips. I can’t even begin to tell you how much pain and agony this must have caused Erica because even though local anesthesia was administered, she cried out several times in pain, flailing her legs and gripping my hands so tightly I lost feeling there. Seeing her like that, it’s impossible to stop my own tears from flowing.

After it’s all done, when she felt more like her stoic self, she turned to me and asked ME if I was all right. The tech that came in to collect the blood and marrow sample, turned around and remarked that it’s the first time he has ever heard a patient, having just undergone this grueling experience, ask another person how that person was. It is just the nature of my sweet and loving daughter to think of me first rather than the pain she is still feeling. How blessed am I.

After that terrible procedure, we had to go to have her heart checked to see how strong her heart is and to determine the chemo dosage she can further endure. It was interesting to see her heart pumping and the blood flow in the sonogram. That took another half hour. By the time we left Stanford it was rush hour traffic and I had a pretty tired lady in the car.

Yet after half an hour of rest whence she sipped some hot tea and snuggled in bed with a heated pad with her favorite word puzzle, she was revived sufficiently for an evening with family and close friends for a Chinese dinner feast.

Tuesday February 19, 2008, Erica will be admitted into Stanford Hospital for intense chemo treatment for four days. A week later, there will be another bone marrow biopsy to confirm that she is in remission. The rest of the time in hospital will be for evaluation of and treatment for any possible infection and/or any of the many side effects.

And so, we begin another episode in Erica’s long hard struggle against leukemia, this time against AML.

Finalized Admittance Date

Erica will be admitted at Stanford on Tuesday, February 19th.

I will update everyone with an address as soon as I have what floor she will be on. Mail time is a fun time of the day :)

Thanks-

Bess

First Appointment at Stanford

Yesterday, Erica, Judy and I (Bess Ocken) had her first appointment at the Stanford Cancer Center. We met with Erica's new doctor, Dr. Steve Coutre and a Hematology Fellow, Dr. Stevie Otis. There are a few things to report:

1. Admittance date is still up in the air. We are waiting on final approval from the insurance company and then we will get an admittance date. It is unclear if she will be in the hospital this coming long weekend. For all of you folks who are coming to visit, stay tuned.

2. When she does get admitted, it will be about a 4 week stay. I know she would love visitors and it would be great to stagger it across her stay in the hospital. I am coordinating a schedule so please e-mail me at ocken@stanford.edu with your plans. Also, if you are even remotely feeling sick, you won't be able to come into her room.

3. Some information about her treatment. The first 4 days of her stay she will receive chemo treatment. The rest of the stay will be the recovery period. This is a much different treatment than the first round as this type leukemia is AML and needs a different plan of attack.

This is definitely a hard time, but your well-wishes, prayers and thoughts mean everything to Erica. Please keep them coming and we look forward to seeing you at Stanford.

I will report back when I know more.

Bess

DFCI

I used to think that my last visit to the hospital could not arrive soon enough.

I have just come from Dana Farber Cancer Institute, my home away from home these past two years. When I first heard the news last Wednesday, I cried, but my peepers had remained try since then- until today. Saying goodbye to the nurses and staff was very difficult. Realistically, most are people I will never see again. It was my first moment too since I learned of the relapse when my gut questioned if moving to California was the best idea.

To be true, I never liked to get up at 6:00 AM to go get my chest pricked and my bloodstream tainted, but the team at Brigham & Women's Hospital and Dana Farber honestly and truly made it possible. If they had been even slightly less than their patient-oriented, friendly, informative selves, I might have used the hassle and stress of my weekly visits as provocation for quitting. Long ago, they stopped asking for my ID card to check in; they reserved private rooms for my treatments even when I was well enough to sit in the chemo-armchair-factory (so depressing!); nurses were always friendly and always made time to answer all of my questions; they'd bring me heated blankets and water without me even asking; they'd page whomever I needed at that moment whether that be a social worker, a doctor, a nutritionist, the scheduler, or even a holistic healer. It's not much, but I always felt like a VIP at Dana One Infusion Room.

Aware that I have been spoiled at DFCI, I'm nervous to be changing all of this and I'm sad to say good-bye to these people who probably don't even realize how important they have been to my life.

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.