stable

I am sitting with Erica in her room with a little sun streaming in... she is peaceful and calm. Our family is here in the waiting area and there are a few at a time with her. We talk to her and tell stories and memories... Occasionally she stirs, but mostly she rests.
I think that perhaps the details aren't as important right now, so I choose to skip the medical play by play.
I do tell her about the posts of encouragement and love... it's important that she, and everyone else, know that there is so much love in this little room. I will post again when there is a change or anything new...

seizures

last night, erica suffered two seizures. after each one, she was non responsive... slowly she began to respond to the doctors poking and jabbing... but she couldn't identify anyone. She sort of looks right past you, never at you. She seems soothed by Josh's voice--this comes in handy now as she seems so infantile in her movements of eye rubbing and scratching and attempts to remove tubes... she doesn't speak but has mumbled once or twice. although we talk to her and try to communicate, we are quite certain that she is not her right now.

the tears don't seem to stop flowing, even as i type this... we are at a loss. the largest loss since this all began because we dont have her strength to guide us now. i can't and will never describe what it was to see my sister endure a seizure... two seizures... i don't wish that on anyone.

i don't know what will happen today but the plan thus far is to keep her comfortable and calm until we know the results of the MRI and go from there. The head CT post-seizure #1 didn't show any bleeds and we are told that she looks similar to pre-seizure.

we will take today as it comes. please please pray....

Re-admission

Family and friends,

Many of you have already heard the news: after a wonderful evening of dancing at Jill and Gary's holiday party yesterday, Erica had a very rough night. She spiked a fever of 102* F and then starting to throw up blood. Luckily, Josh was with her and rushed her to the hospital. We've been here all day, but she has been sleeping thanks to the OBSCENE amount of pain meds given this morning.

This morning, Erica was complaining of an extremely painful headache. They gave her a LOT of pain medication to help alleviate it. Now, nearly six hours later, she is still sedated by the medication and rather non-responsive. When she does seem to stir a bit, she mumbles incoherently and goes back to sleep. They gave her naloxone to try to counter the effects of the opioids in an effort to interact with her. It only caused her to become very scared and agitated. This lasted for a few minutes, but she's calm again now.

As of right now, her temperature is holding strong at 103.8* F. She has a nasal tube for oxygen and a steady flow of antibiotics and fluids.

Everyone should just hold tight for now--don't book a flight or rush over to the hospital. She is in a sleep induced state now that prohibits her acknowledgment of anyone in the room with her. I am here with my mom and Josh, so she is never alone.

As things are in a state of limbo now, I will *try* to post regularly. We don't know what the results of the CT and chest x-ray are yet and we are still waiting to take her down for an MRI.

Until then... peace.
Jaci

102.4

Is it the fluorescent luminescence that draws me back time and time again? The bone-grinding procedures, the hilarity of my bodily functioning being table talk, or maybe those dang-good-spirited nurses smocks perhaps? No, it is is none of these things that find me here again, in yet another room at Stanford Medical Center.

I'm here because I woke up with a high fever on Thursday, 11/18, and fevers are a good sign that there's some kind of infection in the body. Because my white blood cell count is so low, other indicators may not present themselves (such as pus, swelling, etc), we and the docs are left wondering at the source.

Meanwhile, the results from Wednesday's bone marrow results were not happy. One's bone marrow should be filled with white blood cells (as one is as a newborn); I apparently only have about 10% total up in there (what a 90-yr-old might have) and of those, 80% are leukemic.

It's Sunday now and I've been without fever for 24 hours. Another 24 and they will assume that one of their IV antibiotics did the trick and I can go home.

Whether here or there, the same questions loom about the big picture. The "how do we keep this girl alive as long as possible game?". I can see the doctors all white-coats-aside throwing darts at a board with the following in various rings:

should she do another round of vidaza/myletarg?
should she can another infusion of cells from her original donor?
should we just send her home and let hospice take it from there?
should we try XXX brand of chemo next?

So if anyone asks you, How's Erica? you can say that neither she nor her doctors have any idea.

For me, my emotions are all over the place. So much sadness. sadness. sadness. a bit of anger and fear.

Friends and visitors and all that the tokens they send remind me why life's worth fighting for.

Seeking eastern medicine for poor chi. Will travel.

Erica asked me this past weekend, “Is it weird talking to a person who may be dead in year?” As I was completely taken off guard by this, I fumbled through a chastising list of reasons she shouldn’t talk like this, shrinking in my seat. But a day later, I brought it back up and honestly answered that “yes, it’s weird and it sucks… but it’s sort of a gift too”. I love that she understood what I meant.

We are enjoying each day for what it is and have sort of jumped the gun too by putting up a Christmas tree a wee bit early this year. Every other day, Erica still must go back to ITA to have her blood drawn and has consistently needed platelets. Some days she has more energy than others, but has taken to napping each day and sleeping 10+ hours a night. She has a pretty decent appetite, and with all the amazing dishes being sent over, it’s hard to object! Her spirits are always the highest when she’s with family and friends. So it’s good to see that some things never change!

One new development is the inclusion of eastern medicine to Erica’s continued western treatment. She still receives her low-dose chemotherapy monthly and takes all the meds prescribed by her physician at Stanford Medical Center. In addition, we went to meet a woman who is a Chinese herbalist and has been treating patients with a variety of ailments with treatments/herbs utilized for thousands of years. She spoke to Erica through our Mom (aka “translator”), asked about the meds she’s currently taking, felt her pulse, and examined her tongue. After a minute or so of “aaaahhhhhhhh”-ing, she came to the conclusion that a specific blend of dried herbs boiled for a couple of hours will fix Erica’s chi. In short, Erica’s immunity needs help, and her chi sucks. We quickly found that the final product of this boiling is something like a stinky brown sludge. Our Mom now boils this in an electric pot/kettle out on the balcony so we don’t have to smell it in the house, but poor Erica still has to drink two bowls a day! After cheerleading it down her throat, I stepped up to show her that it’s just not that bad… I found out that it’s far worse than Erica ever let on! One sip had me coughing and gagging, and she drinks bowls of sludge! So after this experience, I admit that most of my skepticism regarding eastern medicine was put to rest knowing that Erica believes in its healing properties enough to endure its flavor. I am not extremely educated in eastern philosophies and medical ideologies, but I certainly respect it.

In case we don’t post again before Thanksgiving, from our family to yours, gobble gobble all the goodness this year! It’s hard to imagine a family more thankful than ours: to know Erica, to love her, and to have the privilege of each day with her as a gift.

Home

Hi Everyone,
Sorry for the long delay in posting. Erica was released from the hospital on Sunday afternoon and went home to her Mom's place. Last week Erica received a low-dose chemotherapy and another treatment in an attempt to keep her counts in check, meaning keeping the leukemia from rapidly reproducing. These two treatments called Vidaza and Mylotarg were chosen by Erica and her family because they had the best chance of prolonging her life without making her horribly sick, and so far, it seems to be working. Right now her main complaint is oppressive fatigue which could be a result of few different things. The plan is to be checked at Stanford 3 times a week and monitor her counts.

She asked that I send her thanks for all of the displays of love and support. The cards, the gifts, the blog postings, the e-mails, and all the wonderful meals made her time in the hospital a little more bearable.

Jamie

P.S. Good news, Erica is the proud owner of a new iPhone (same phone number)! For those of you who she is in touch with, please text her your phone numbers (don't forget to include your name).