Rosina's Road Trip

for those who didn't know her (and those who did)

2009-08-03T21:34:00.001-07:00

I made this video as part of my "tribute" for my grief group.
It's about 17 minutes.
Try hitting play and then pausing to let it load.
xop

Rosina from peter hastings on Vimeo.

Kimo's Rules

2009-03-12T12:48:00.000-07:00

first, a couple more pictures I meant to include:

Below is a little thing you see around Kauai; on ceramic tiles and tee-shirts, or framed in someone's kitchen, which is where Rosina and I first saw it.

Never judge a day by the weather
The best things in life aren't things
Tell the truth - there's less to remember
Speak softly and wear a loud shirt
Goals are deceptive - the unaimed arrow never misses
He who dies with the most toys - still dies
Age is relative - when you're over the hill you pick up speed
There are 2 ways to be rich - make more or desire less
Beauty is internal - looks mean nothing
No rain - no rainbows

xo
ph

To the Sea

2009-03-05T01:00:00.000-08:00

Rosina's Birthday, February 27

Hanalei, Kau'ai, Hawaii. I often seem to proceed not with a clear plan, but with a simple goal. A night of music, a dinner, some kind of gathering. With the help of improvisation, tenacity, optimism, and a lot of friends, we usually, magically, arrive at the destination. So it seems to be with delivering Rosina's ashes to the ocean here in Hawaii. The original plan was to go out in a boat into Hanalei Bay, but it's February, the water is rough and the wind was strong. It was considered dangerous, and I thought that on a boat, there are a lot of steps of unpleasant before you even approach dangerous, so that was out. No worries. There are no specific rules about this here. Rosina - ocean - Kauai.

Jake, Nina, Will, Sonia, myself, and our Hanalei friends, Gary and Theresa, and Andrea and Rogerio, headed down the road to Lumahai beach. I have a photo of Rosina walking down to the beach that she saw once and said most definitely, "That's me."

2003

But the surf there was huge. It's the beach in the top picture. It was a spectacular show but no one was going in. So after staring at it for a good long time, we headed down to the end of the road to see if we could go around Ke'e beach to an amazing spot at the beginning of the Napali Coast. But the trail was closed. It's a seasonal thing.

On the way there, I kept having the feeling that she should be in Hanalei Bay, so we'd head back there. But then we passed a spot that she always loved. It's a fresh water stream that runs into the ocean, and there's a pool where you can take a cold plunge. Rosina always searched these places out in Brasil - the mountain streams, the waterfalls - and she loved to stop here after being in the ocean and wash off the sea.

Rosina swimming in the same spot, 2003. Who could have imagined that we would be placing her there six years later as ashes? (enjoy what you've got now!)

So we started here. Taking handfuls of her ash and releasing them in the rushing water between the rocks. When they hit the pool, they spread out under the surface, looking like a spirt slowly moving with the current. They continued on downstream where after about a half mile through the woods, the stream meets the sea. Again, as it was in Rio, there really was a feeling of letting her go, and of her being somewhere.

After that we went back into Hanalei and walked down the beach.
Whenever we arrived there, we would go straight out to the beach and get into the water. That alone is nice, but then you stand up and turn around, and there are beautiful green mountains right there, with distant strings of waterfalls streaming down. Again we all added handfuls to the sea. Then I took what was left and waded out, first throwing some handfuls in the air, and then diving under with the rest of it. The water was active, turbulent, and happily took her right away.

Many times when we get to a place like this, and for us, specifically this place, one of a simple lifestyle and in communion with nature, we would look back at our lives in Los Angeles like we were cogs in a machine, staying busy, staying frantic, hustling along with the flow. I'd think about it and wonder, "Why all the fuss?" Again, I think in death, if we have conscience thought at that moment, it must be very similar, looking at all of us here, bothered and worried, bustling around in our bodies; "Why all the fuss?"

Our sweet girl has met the Atlantic and the Pacific, and may she float in peace.
xo
ph

Feliz Aniversario!

2009-02-27T11:38:00.000-08:00

We're in Hanalei today for Ro's birthday. Went out to the beach around 6:30 this morning and came across a rainbow. Releasing her ashes later today...

xo
ph

One Year

2009-01-19T00:01:00.000-08:00

This is the post-it that Rosina wrote and stuck over her desk about a year and a half ago. I have it in a little frame. A message from her.

And this is a design that she had on a shirt, more words she loved. It reads: music, sensitive, kiss, tears, love, care, life, adventure, mystery, now, luck, flowers, travel, space, freedom, sigh, feeling, "saudade", union, truth, future, loyalty, play, fantasy, art, friendship, sincerity, desire, happiness.

Wishing you all of these, from her.

xo
ph

ps light a candle

untitled

2009-01-18T00:06:00.000-08:00

There was a day in early December of 2007 when a doctor told me the time might come to make some tough choices. And he meant the single, toughest choice. And that time came. In the last several weeks of her life Rosina had at least eight or more tubes in her body – several in her chest, a catheter, one in her stomach, one in her side, stuff on her arms, her legs, her finger. She was getting dialysis for her kidneys, she was getting platelet exchanges, which also require a big machine, she was wired for all kinds of measurements, receiving all kinds of medication, fluids, morphine drip, and of course, she was hooked up to a ventilator. The “vent” was breathing for her. Without it she wasn’t quite strong enough to get all the oxygen she needed. There was a huge battery of equipment there. For those of us who had been through the whole progression, we were used to it, or numbed to it, but for someone who came to see her, came in fresh, it was shocking. She had problems with her lungs, her liver, her kidneys, she hadn’t been able to move or squeeze my hand for weeks. As her body was failing doctors chased symptoms and causes with tubes and chemicals, at this stage each small positive gain taking a toll somewhere else. (Ironically, a biopsy showed that the bone marrow transplant had gotten rid of her Leukemia). Doctors had told me that she probably couldn’t handle one more thing. On Friday, January 11, I was there with Lea and Lupe and she had a seizure. It was eerie. Moments earlier she seemed to be responding to the music we were playing, then, in response to a question, she began to shake her head no. She kept shaking her head and it was a minute before we realized that she was having a seizure. It lasted almost fifteen minutes. They wheeled her downstairs for a CT scan. She had some bleeding in her brain, an effect of an infection. That was the one more thing that she couldn’t take.

What is the purpose of all these measures, all the equipment and the drugs? To see you through. To build a bridge. To get you across the chasm, a chasm of things that will quickly take your life if untreated, to where you can walk on solid ground and heal. But the ground on the other side of the bridge had been crumbling for some time. We had reached a point where we were simply keeping her alive.

The preservation of life is deep in us and our culture. Real life sagas, and millions of stories, hinge on the simplicity of preserving someone’s life. And following that, the idea that you are a part of ending someone’s life is a heavy responsibility. I didn’t want to make that choice. But it had become quite clear that she was not going to recover. Did she really need an IV to regulate her blood pressure? To feed her? Dialysis for her kidneys? We began to peel away some of these treatments. We stopped her dialysis. The doctor told me that that alone could take her life in a short time. Days, although it could be weeks. It is difficult to say, but I have to admit that there were times, as I sat alone with her late at night, in the dark, with just the breathing sound of the ventilator, that I wished something would fail, that something would rise or drop too much and we would have to let her go, let her go by doing nothing, because I knew what was coming, the specific choice that I would have to make to stop it all. But she didn’t slip away like that.

The choice, of course, was taking her off the ventilator. This is the one that frankly makes you feel like you are killing someone. It's so deliberate. But again, what is the natural course of events? What is “God’s” way? To let her go in peace as she would without all this intervention, or to keep her alive when she is by all accounts past healing? It was the latter that started feeling more deliberate. Then late one night two nurses were doing some maintenance on Rosina’s tracheotomy, the plastic apparatus in her throat that the ventilator tube was hooked up to. They didn’t have the replacement for one little plastic part, so one of them said, “Just take her off for a minute and I’ll clean that one.” So they removed the tube for about 45 seconds. She was breathing on her own. It was quiet, it was calm. It wasn’t desperate, it wasn’t gasping, it was in fact, quite peaceful. And suddenly the whole idea of letting her go that way wasn’t so horrific (except for the part about letting her go).

I was up very early on Wednesday the 16th. I’d been sleeping at the hospital and staying there full time for several days. I went out to the lobby, a comfortable place with huge floor to ceiling windows, as the sun was coming up on the San Gabriel mountains. The doctor was making his rounds and found me there. We discussed what had happened and how things were. I told him I thought it was time. I wanted to wait a couple of days, some people were arriving and Friday the 18th was Jake’s birthday, so we decided on Saturday the 19th.

You can’t imagine what it’s like to tell people "the plan". That there even is a plan. That it’s scheduled. I said it straight, I said it with sobs, I whispered it in some people’s ear. It is a haunting memory, saying “We’re letting her go tomorrow”. I remember so distinctly greeting my friend Andrea, hugging her as I had done many times, but this time whispering "We're letting her go tomorrow." Many things gain incalculable weight just by saying them out loud. Try "I love you". Sweet Rosina. I was not a witness, I was a participant, an instigator, a decider.

People gathered at the house on the 18th for Jake's birthday. An incredible solemn camaraderie among the food and drink and music we played. At one point Zelia sang "Circle Game" with Wesley on the piano. It was beautiful and perfect, and when she finished, there was a lasting silence in the room that was sorrowful, but absolutely amazing. An unannounced prayer. It was one of the few moments in my life where time stopped, and we were all aware of eternity.

It is a powerful, but a sad, sad, thought to think of us gathered around her that morning around 10:30, but I’m so glad we were. I held her head, my face close to hers. Jake on one side and Nina on the other, holding her hands. Others standing around the bed, laying their hands on her; my parents, Sonia, Bety, Zélia, Pearce, John, Mary. Others in the hall and the lobby. Mainly quiet. The only sound being her breath. All the equipment was shut off, just us listening to her breathing. It slowed, it slowed. It stopped at 10:53. I went out to the lobby to let Will know she was gone. He was eight.

I find that I don’t fear death now. I don’t think it’s terrifying. I don’t think it is mysterious. I think it is a release. But may we be here as long as possible to love, comfort, and care for those around us, and to make them stronger for when we might leave them behind.

Will in 2002, age 3
xo
ph

P.S. 2/12/09

The day that I spoke to Rosina's doctor about taking her off life support, he found me in the lobby and this is what I was listening to on my ipod, from "The Power of Myth":
Campbell: Eternity isn't some later time. Eternity isn't a long time. Eternity has nothing to do with time. Eternity is that dimension of here and now which thinking and time cuts out. This is it. And if you don't get it here, you won't get it anywhere. And the experience of eternity right here and now is the function of life.There's a wonderful formula that the Buddhists have for the Bodhisattva, the one whose being (sattva) is illumination (bodhi), who realizes his identity with eternity and at the same time his participation in time. And the attitude is not to withdraw from the world when you realize how horrible it is, but to realize that this horror is simply the foreground of a wonder and to come back and participate in it. "All life is sorrowful" is the first Buddhist saying, and it is. It wouldn't be life if there were not temporality involved which is sorrow. Loss, loss, loss.
Moyers: That's a pessimistic note.
Campbell: Well, you have to say yes to it, you have to say it's great this way. It's the way God intended it.

New Year's Day

2009-01-11T01:17:00.000-08:00

It is a Brazilian custom to wear white at New Years and to make an offer of flowers to Iemanjá, the Goddess of the sea. Usually you do this on New Year's Eve, but we went out to the beach on January 1st. John Allen and I actually went in for a swim, the ocean being a brisk 53 degrees - that is cold.

Rosina and I had a running joke/argument (oddly close together) about the possibility of life and love being like a field of daisies. Despite being an optimist, I tended more to the "no" side, but I still tried to give her daises whenever I could. I brought a bunch and these were the flowers we threw into the ocean as we made our wishes.

We said our prayers for Rosina, and goodbye to 2008, the craziest year of my life.

Happy New Year

cheek to cheek

2008-12-16T09:32:00.000-08:00

"Cheek to Cheek" was the song Rosina and I danced to at our wedding.

We met in 1985. We were good friends until 1987, when we became...better friends. And part of that experience was watching "Top Hat" together, which is why we picked the song. I was looking for the lyrics (which, of course, start with the line, "Heaven, I'm in heaven...") when I came across this clip of the song - with Portugeuse subtitles!

Today would have been our 20th wedding anniversary.

There's That Tree

2008-12-09T23:27:00.000-08:00

When we were kids, my parents would drive my two brothers and I to the other side of the Schuylkill river to see cousins or my mother’s parents. We took a crazy route that as I now try to remember, I get lost. The way was not marked by street names and numbers but by quirky and personal landmarks that had the qualities of a private joke.
Driving under the faded green riveted el train platform, going up the hill in Manyunk past brick factories…and then the real landmarks, the ones we yelled out loud in unison, like “Ritchie Allen’s house!” Ritchie Allen played for the Phillies in the 60’s.

I have no idea how we know that it was his house, or even if it was, and I can’t say it matters, we all just always tried to yell it first. On one trip, on a perfectly ordinary suburban street, we saw a slow moving car run into a tree. It was kind of exciting, but more importantly, it offered another landmark oportunity. After that, every time we drove past, took that right turn, and came around that curve, we would yell “There’s the tree that got hit by a car!” And it was still there, scarred, but healing the way trees do, a gray patch with a ring of growth around the edges. For years we always shouted it out, and I’m sure if we passed it now, we would do the same. “There’s the tree that got hit by the car!”

I always vaguely picture the year as a circle, with the New Year at the top and summer starting down at the bottom. It swings back up through the fall, curving toward January. November 19th last year was the day that Rosina’s oxygen dropped and she was rushed down to the ICU. She was there for two more months. It was a complication, that unchecked, could be fatal all by itself in a matter of hours, and I see now, though I hate to say it, it was the beginning of the end. December 7th was the day doctors began telling me about, preparing me for, what could happen. It was close to the time that I had to tell the kids. And I feel like we’re coming around the curve right now, here in late November and early December, coming around that curve where the car hit the tree. The car’s not there, and there’s little sign of an accident, but the tree remains, and shows a scar, healing.

xo
ph

Election Day

2008-11-04T09:10:00.001-08:00

Will and I vote for Barack Obama, November 4, 2008.
Rosina would love that guy.

xo
ph

October 28, 2007

2008-10-28T17:56:00.000-07:00

This day, last year, was the last time Rosina was out and about, roaming the earth free. She was admitted to City of Hope on Monday October 29th. At the last minute (see 10/28/07 post) we went out to the beach with the kids and with our friends Bella and John and their kids Juliette and Cooper who we've known for fifteen years. I just wanted to post a few more photos from that afternoon in a remembrance of a beautiful, spirited, and appreciated day.

Rosina loved the ocean, and this was the last time she saw it. Of course, if we'd known that, we would have never stopped crying! It put on a good show. Enjoy it while you got it!
xo
p

the future of junk and a mountain remembrance

2008-09-29T20:34:00.000-07:00

A couple weeks ago I was in my brother’s garage in suburban Philadelphia. It is completely packed with junk. But the kind of “junk” you don’t want to throw away. Old chairs, parts of dining room tables, a partially restored snow blower, a few tires – slicks from dragsters – lots of bicycle parts, old beds, all kinds of odds and ends that were cleared out of the house, purchased at garage sales, or are awaiting fixing as they hang from the rafters and pile up on an old couch. I like junk, myself. I have a lot in my garage. I like the possibility of repair, reuse, and creative repurposing, and I suppose it also plays to my (weak) undercurrent of Yankee frugality. But what the garage is really full of is dreaming. The whole place is full of “Someday…” All these mysterious and foggy plans we have that float through our brain, plans we share or hide from our spouse. Plans that flow with the tide of your relationship, and plans that absolutely go against the current. Dreams that wait behind the practicalities of your daily life, the obligations, the intrusions, the indecision, the group efforts; waiting to be played out, to change, so that you’ll have time, “Someday…”. I suppose that the not uncommon garage full of stuff hit me in this way because when Rosina died, that hazy bank of dreams disappeared. You couldn’t even watch it blow away, it just evaporated. All the maybes and the somedays not even holding enough shape to be carried somewhere, just gone. But it didn’t clean the garage. So there you are, as you stand before all that suddenly unspirited stuff, faced not with the possibility and the dream, but with a pile of junk. And it’s okay to throw it away. It’s okay to clean your future.

In August we were lucky enough to go to our friends Gerry and Kit’s place outside Telluride Colorado. My entire immediate family, parents, siblings, cousins, made it and we had a great time. It is a place of dramatic geography and open skies and was quite welcome. It was the first time we had all been together since last winter, and in fact, I don’t think we were all together last winter at any one time, so longer than that. Gerry and Kit had put up some Tibetan prayer flags on the edge of the mesa, the escarpment, and the flags flew there for Rosina. The idea is that there are thousands of prayers written on the flags and the wind blows through and carries them off like milkweed, endlessly.

It seemed like a good place and time to do something. Toward the end of our stay I had everyone find a small rock and write their name on it and we went out by the flags to pay tribute to the girl.

As the sun was setting on the mountain range across from us, we placed our rocks in the pile that held up the flags. We then had a long moment of silence. I eventually broke the silence with the Brazilian birthday cheer, and then others chimed in with their warm memories and caring regrets. We didn’t just lose Peter’s wife, we lost a mother, an aunt, a sister, a daughter. Disbelief still rings through even as you discuss the reality.

I have to share something I am so grateful for, the image of her face that I carry is nothing but bright and shining, a full smile.

Finally my nephew Dan sang a song he had written with a friend on a beach in Mexico, full of sweet farewells and sights and sounds perfectly suited for Rosina. It was a good moment and we’re all glad we did it. If somehow you end up there, please add a rock.

xo
ph

Back to Rio

2008-03-25T17:45:00.001-07:00

Ro makes a point to Zélia on Copacabana beach, January 2007.

Rio de Janeiro is a special place. Sometimes it feels more like an organism than a city. Vibrant, tough, loving, spectacular, messy, urban, natural, and quite alive. I love going there. But this visit carried a particular purpose - to deliver Rosina's ashes to the sea. Half her ashes, actually, as she also always wanted to be in the Pacific ocean as well, off the north shore of Kaua'i. Kaua'i is like Rio in a way, but without the city - Rio 200 years ago. The kids and I traveled with Sonia as well as our and Rosina's dear friend, Marla. She came on a kind of meaningful whim and is glad she did.

On Easter Sunday, March 23, we gathered at the Yacht Club or as it's spelled in portuguese, "Iate" and twelve of us boarded the boat. It was a pretty decent size with a roof deck above and a couple of rooms below. We headed out of Guanabara bay, passed not far from Zélia's house, rounded Pão de Açucar (Sugarloaf) and headed out into the ocean: the orange line below.

Rosina lived from age 5 to 24 near Copacabana beach. It was part of her neighborhood. She went to the beach the way you might go play tennis or go to the store or sit on your porch. It was a daily part of her life. It's hard to describe the view of the city from out there in the ocean, the mix of huge rock faces on mountains of jungle greens footed with high rise buildings, but I can tell you it's beautiful and dramatic and a fitting place.

For days before we left I kept wondering how to carry the ashes, how to let them go? They are delivered in a plastic bag which is inside a plastic box, which is inside a velor bag. Kind of a Crown Royal bag. They offer all kinds of urns and such for sale at the funeral home, but they all seemed too Gothic to me, plus I'm suspicious of the business of profiting from people in misery.
Although I have to say that the miserable day when Nina and Pearce and I were at the funeral home, the very day she died, we laughed as we considered buying the "memory book" that had an American flag printed on the cover and the caption "Thanks From a Grateful Nation".

I decided to just take the ashes as they were, and after separating half of them out with big kitchen spoon (to take to Hawaii later), I packed the box in my carry on bag. Ashes, by the way, are not really "ashy", it's more like dusty sand. I think, in fact, it's mostly bone. Is this too much info? When you see someone who has died you can easily tell that that they're not there anymore, maybe their spirit floats around the room, floats around inside you, but at the same time - holy crap! It's them! So it is with the ashes.

Once we had reached a good spot, the engines were shut off and I took the box out of Rosina's orange back pack. Lea had brought white roses and we all threw them on out onto the water. It was quite clear to me, after previously thinking that this was a bit odd, that the best way to set her off into the ocean was simply by taking handfuls and releasing them. And that is what we did.

First me, then the kids, and then everyone else. The boat had a small landing in the stern that was right at the water's edge. I let them go on top, Jake sunk his hand in the water, some threw theirs to the wind. We all did it, more than once. It instantly felt right, it felt secure, and it was simple. But there were tears and there were the reminders of the shock of it all that causes Zélia and I to repeatedly say to each other "So, it's true."

I jumped into the water soon after, a ceremonial dive, not unlike the one we took at our Brazilian wedding, and then before the current carried me away, I swam back to the boat. We went and anchored off another beach and several of us went swimming before heading back to the house for a lunch with a few other dear friends and cousins.

May you never need to to do this, but if so, may it be as beautiful. Sweet girl, keep swimming.

xo
ph

Off the coast of Fernando de Naronha, March '06
The lyrics to the chorus:
Who taught me how to swim?
Who taught me how to swim?
It was, it was, sailor,
It was the fishies in the sea
It was, it was, sailor,
It was the fishies in the sea

Happy Birthday

2008-02-27T21:06:00.000-08:00

Above is a cartoon by our friend Rogerio that he did for Rosina's birthday today. She would have been 47. We went out with the kids to Sushi Ike as we've done for many many birthdays and Rogerio delivered a great hand drawn card as usual. Besides being spot on for Rosina (color is good!), it's also a reminder to carry on; although your circumstances may change, carry on. Of course, she looks great in white, too.

Some days are long, some are short, and we all have our moments. It is an odd sensation to be utterly convinced that something happened, yet still not believe it. It's not denial, it's shock. Sometimes the missing is a happy fleeting remembrance, and sometimes it's like staring into a dark hole of eternity (speaking from experience, try to avoid that when you're driving).

One week after she was gone, we had a memorial here at the house. For practical reasons I kept trying to come up with another place, but, as it's said, there's no place like home. I wanted it to be true to Rosina, and true to me, true to us. And it was. There were one hundred and fifty or maybe two hundred people here. Among the many people who told me how much they appreciated the day, I spoke to someone yesterday who said it was a little odd. Why? "Because it was such a good time." I just couldn't imagine a dour and grim service as paying tribute to Rosina. Friends and family spoke, read poems, sang songs and cried bunches while at the same time, all the attending children ran around outside and laughed. It was right. There was a fabulous group effort to get everything together, from the incredible food to the AV squad to the setting up and cleaning up. (I thank you!)

All week cold rain had been falling and more was predicted for that Saturday. Earlier, Will had asked me if Mom was going to try and contact us somehow. I told him that she would do it all the time, but in little ways; little things that we saw or that happened to make us think of her, that's how she'd do it. And as if to prove it, that Saturday the sun came out for a beautiful day of blue sky. A gorgeous day, and as people started to leave late in the afternoon, the clouds crept back in and it rained again. She opened a small window for us. It would have stayed open longer, but hey, she's new to this.

We are all back to our "normal" routine with occasional missed days and occasional blank expressions. It's still really early. But today with bright eyes we salute our dear Rosina's birthday and sing the song that is not a regular Brazilian birthday song, but one that we always sang together:

Saldamos o grande dia
que tu hoje comemoras
seja casa onde mora
a morada da alegria
o refugio da ventura
feliz anniversario!

(translation)
We salute the great day
That you commemorate
This house where you live
the dwelling of happiness
the refuge of joy
happy birthday!

xo
ph

What a Wonderful Person

2008-01-19T16:54:00.000-08:00

Rosina reached the end of her road trip today. She lost her tough and valiant struggle this morning. Recently the complications of her condition compounded into something that she couldn't fight, and she calmly slipped away.

She was peaceful, she was surrounded by people who loved her and people whom she greatly loved. This is all she ever wanted in life. To be surrounded by love. Love and honesty. She was not a person who aspired to things that could be measured. Her idea of an achievement was a gathering of people who showed no pretension, who were caring and warm and fun. Love and honesty. These were things sometimes lacking in her life, and she unconsciously made them more than her goal, it was her only real place of comfort. She had a career as a singer for some time, but after we fell in love and started our family, she didn’t burn to sing. She never really pursued it after that. Singing was always for her a place of beauty, but it was also a place of longing and escape. Her mother, who was also a singer, had a child and gave up her career. Rosina had a child and gave up her sorrow. She built a beautiful family and many deep friendships; she made sisters and brothers; she became a mother.

Our task is not to be sorry, we can certainly be sad, but we should not be sorry. Sorry seems to be full of regrets and disappointment. We need to take everything that we loved about her and make it our own, and here it is very simple. Love and honesty. If I need to speak with Rosina I don’t look to the sky or look to the ground. I look at the faces of those she knew well, I look at our three beautiful children; I look in the mirror. For I was greatly loved by her, and my love for her is the same. Sweet girl, you leave us now, but you stay forever.

xo
ph
and family

Visiting

2008-01-14T18:01:00.000-08:00

Friends, we need to hold off on visitors for the moment. Please send your emails and notes and calls and all that stuff, though.

Thanks,
xo
ph

She's a Fighter

2008-01-14T00:18:00.000-08:00

That's what the doctor said to me today after visiting with Rosina. Things are very difficult and she keeps hanging in there. He expected her to be sleeping but she responded to his questions with a nod or a shake of her head. Unfortunately, a good look in the eye does not indicate what's going on inside. In the past week she has acquired some infections which are, of course, not good for her. Her general outward condition stays about the same. Still in the ICU etc. sometimes awake, sometimes not.

Last night I came out with Jake and Nina and Sonia and I think some others felt the need. I counted today; there were 23 of us out here at the same time. Very Rosina: an improbable and impractical event that everyone was glad they participated in. She has a knack for that. The whole group was friends, all people who know each other almost exclusively because of us, and when I say "us", I mean Rosina. I'm more like the roadie.

Thanks everyone for your calls and emails and notes and visits. I'm trying to find a way to save all my voicemails!

xo
ph

10 Weeks - updated

2008-01-08T08:25:00.000-08:00

Not too much to report as most of the changes with Rosina are very small and swing from day to day, or even during a day, and I don't feel like posting all that. She is continuing with all the treatments that she's been getting. She'll probably stay on the ventilator for a while as she needs to build back her strength. One of the unfortunate aspects of this is that she can't talk, and I'm quite sure she wants to. I know I'd like to hear her. So we stay positive and look for her smiling.

UPDATED - Rosina had two procedures today, a bronchoscopy and fluid removal from her stomach. The bronch showed no signs of bleeding which they expected, but there might be some aspergillus which she's already receiving antibiotics for (do you really want to know all this?) and they'll do tests.

They pulled a bunch of fluid from her stomach which was good and probably relieved some pressure on her lungs. It could have also been hindering her ability to absorb the food she's been getting.

The other good news is that her White Blood Cell count, which had dropped and then risen just a bit up to a 1.2 range, was up to 3 this morning and 5 this afternoon. That rapid rise is kind of how it went up the first time after the transplant. That's good, as of course she wants her white count up.

Many people have been here in the last few weeks visiting and helping and it has been inspiring for all. Thank you all so much for your tremendous help.

xo
ph

Designated Donors

2008-01-03T23:21:00.000-08:00

Rosina has received lots of blood and platelets over the course of her hospital stay. When you get a unit of blood that someone donated specifically for you, it has a yellow tag on it. The other day the nurse pulled the tag off for me and I put it in the pile. There are 23 designated donor tags. I'm impressed. If you are one of those donors - thank you!

Rosina is still in the ICU and has been for over six weeks. After a couple of very hairy weeks her condition has improved a bit. She continues to be more alert, has wiggled her toes and moved her knees, and for some reason, has insisted on keeping my reading glasses perched on the end of her nose. Nina was here showing her some photos and I put the glasses on Rosina. Whenever we take them off or ask if she wants them off, she shakes her head "no". She's had them on for three days and sleeps with them.

She is still getting dialysis and plasma exchanges. They say her kidneys will heal, but they need some time. The dialysis machine filters your blood and draws out excess fluids. It takes a machine about the size of a small fridge with wires and tubes and filters and gauges to do what two small fleshy things in your body do naturally. The body is an amazing thing, which is why it takes some much work to take care of it if something's not quite right.

Her white blood cell count got particularly low and there could be several causes for that, but the bone marrow biopsy didn't show anything worrisome, which means that it probably was more an effect of all the other treatments she was getting. It's been quite a chase taking care of the lungs, liver, kidneys, bone marrow, and general weakness. The white count seems to be rising. It was as low as .2 (4-10 being normal) and today it was 1.2.

While most of this is encouraging for us, for Rosina, as she wakes more, there are anxious times of trying to take it all in. She can only hear so much explanation, and generally just prefers having friendly faces there with her. Several of us have been taking turns spending the night. She's been receiving lots of loving care. And from the people Rosina knows, it is genuine, just the real deal. Months ago she put a post-it up above her desk at home where she had written "Love Heals". I think I'm going to frame it.

Still in the woods but looking for the meadow,

xo
ph

Slow Cruise

2007-12-29T16:11:00.001-08:00

Not too much going on at the hospital. Well, that's not quite true. There's a lot going on all the time to maintain and improve Rosina's condition, but her condition has not changed that much. She is getting dialysis almost daily. Her kidneys aren't working quite right, but they are in a condition can heal over time, so the dialysis is to hold her over. Her white blood cell count has been pretty low and they're not quite sure why. They did a bone marrow asphersis to check that out, results next week. Lots of people have been in to see her which can be great and uplifting, as well as very tiring. So those of us that have been by have gotten both responses. Her level of awareness/awakeness has been about the same all week, recognizing faces, mouthing some words, cracking a small smile. So she continues on this slow cruise.

If you've known Rosina for a while, you might know what she's doing with that thing on her head. She's turning a "puddim", which is pronounced "pu-jeen" in portugeuse; flipping it out of the mold and onto a plate. It's a Brazilian flan or sort of a créme caramel, and Rosina has made a lot of them. If she was home, she would have made one this week. We've had lots of people here at the house, quite a fest in her honor. Hope you've enjoyed your week as well.

xp
ph

Christmas Eve

2007-12-24T15:40:00.001-08:00

Not much change here. Rosina is listening and responding to questions, nodding and shaking her head. We've talked a lot and I've told her many times how many people are thinking about her. Jake and Nina have both been back to see her. I read some notes to her that she's received and sang Silent Night to her in Portuguese (Noite Feliz). She got another plasma exchange which takes a couple of hours, and also dialysis, which takes even longer I believe. She is a little worried, but she is calm.

We have family here now for Christmas, and more arriving this week - it will be loud. Whether you celebrate Christmas or not, you're probably out of your normal routine this week, seeing people you've known a long time. Enjoy it!

xo
ph

Friday

2007-12-21T17:22:00.000-08:00

Rosina had some symptoms that led them to do another bronchoscopy today, but her lungs were clear. There was actually a little something in there that they sent off (not blood), but she's already getting antibiotics and it doesn't seem to be an infection. They're lowering the steroids again. So it was good, although now they have to figure where those symptoms come from(!). She was also more alert, as much as she's been in a long time, and when I said "I love you, can you hear me?" she nodded yes. Which is a lot right now. So there are lots of things in question, ups and downs continue. Here's to more ups.

xo
ph

Saudade

2007-12-20T11:22:00.000-08:00

"Saudade"(pronounced sow-da-gee) is a wonderful portuguese word that doesn't really have a literal english translation. It kind of means "missing", as in "I miss you", but it has more flavors. It's a longing in your heart, and it carries a kind of bittersweet acknowledgment of fleeting things; that the enjoyment of being together is an end in itself if not simply the best thing of all - very Brazilian to me. And very Rosina. Saudade, mb, muito saudade.

She is kind of the same. Her body is under a lot of stress and there are a variety of treatments going on. Honestly, it's tough. I took Nina out to the hospital last night, it was a really good visit. Although Rosina cannot respond, Nina talked to her for a couple of hours and held her hand. Nina said it wasn't as weird as she thought it was going to be. It was nice. I took Jake and Will today. Their reactions were mixed. Jake was a bit choked up, Will was a little weirded out. I sat with him outside later. I asked him how he thought mom looked. He said, "She'd win first prize in a Halloween contest" which was both heartbreaking and funny. But it was definitely good for them to go.

We did a project where we put Rosina's handprint on some fabric. Later social services people at the hospital will use it to make a pillow that the kids can have. They pick the fabric and Will, for one, put his hand print next to Rosina's. I actually took her hand and brushed paint on it to make the print. It reminded me of how she always talks about stuff we used to make together when we met, like flyers for the band (we were in a band together) or later, Christmas cards. A little art project. She'd like it.

She was more alert today, moving her head a bit. A lot of people came by. She's had another plasma exchange and had dialysis a couple of times. Her kidneys aren't working that well. They did a CT scan of her head and neck and it was all normal. Yesterday they found the bleeding in her lungs had started again and they went ahead and increased the steroids. Today, her lungs were better and they were able to bring the oxygen levels on the ventilator back to normal (30%). It's a lot of stuff for a sweet thing.

xo
ph

Evolving

2007-12-18T21:07:00.000-08:00

Yes, it's her. You can assume that if a couple days goes by without any news here, it's because there's not a lot of news. The waking up has been so slow, and the difference between days is how many times Rosina nods her head, or how she looks around, or if she was able to close her mouth. She's starting to do all three. She looks better.

This morning they switched the ventilator to over to CPAC mode, which means that she's still connected, but she's doing the breathing herself, not the machine. If her respiratory rate gets too slow, the machine kicks in. That's a small but good step. They have also lowered her steroids and so far have not seen any new bleeding in the lungs, which is what the steroids were for. There was a little concern today as they saw some fresh blood around the trach, and they had to do a bronchoscopy, but the lungs were okay. That was a relief. The "bronch" as they call it, is a lot easier with the tracheotomy. Considering how slow this is going, it's a good thing they did that. She has also had abnormal numbers related to her liver and today they also did a plasma exchange. As a by product of the bone marrow transplant (remember the bone marrow transplant?) your plasma takes a hit and needs to be freshened up. So they wheel in a machine which takes blood out of you, spins out the plasma in a centrifuge and then adds new plasma as the blood goes back into her body. There's also been some concern about her kidneys, but that changes day to day. It's hard to keep track of all this stuff and how it is caused and/or connected. I'm not sure, but I think the plasma condition also shows up as low platelete numbers, and she's been getting platelets. She's been getting everything.

I was over there today and talking to her and her eyes opened a bit, but when I sang a bunch of songs to her, songs I made up to sing to the kids, her eyes were open wide. She heard it. It was nice. Those songs usually put her to sleep (as they should).

Thanks all, for the kind words!

xo
ph

Three Wedding Pictures

2007-12-16T20:55:00.000-08:00

Today, December 16th, is our nineteenth wedding anniversary. I remembered this one. We actually got married twice. The first time was in Pennsylvania, and since Rosina's family was all in Brasil, my mother, a woman with three boys, got to plan a wedding. For Rosina and me it was really easy. We showed up one week before the wedding and there it was. It was at night, black tie, and the church was decorated with greens for Christmas.

Months before we had decided to get married, Rosina was in the attic with my father and he was opening these old boxes of dresses that belonged to my Grandmother. They were all from the twenties, flapper dresses and evening gowns. Rosina said, "If there's a wedding dress in that box, I'll marry your son." And there was. It's the dress Rosina actually wore for the wedding. My grandmother wore it in 1927. Rosina put finger waves in her hair and wore these cute silver shoes. She looked great. My father lost it when he saw her all dressed up like that. He walked her down the aisle.

Our second wedding was in January in Brasil. It was at her brother's ranch about an hour and half from Rio de Janeiro. Her bouquet was made from flowers gathered around the property. We wore white, we were barefoot and we got married by the bank of the river that runs through the property. It was pretty groovy. The justice of the peace that married us was completely wall-eyed so he managed to look us both in the eye at the same time. The ceremony was in portuguese so Rosina squeezed my hand when I was supposed to say "sim" (yes). After the ceremony, we climbed up on this big rock and jumped into the river. It all seems very fairy tale right now. It's like a movie where all this nice stuff happens and it's charmed and romantic and then later in the story the wife gets sick and while you're drawn in and feeling it, you're kind of pissed off that the nice story took this highly dramatic and uncalled for turn. It certainly sharpens your appreciation for the easy times. Most of which you didn't even know were that easy. I love you Z, here's to many more years. Nineteen's not a very big number.

Rosina is holding steady, opening her eyes, and proceeding very sloooowly. So far, so good. We have a mile of baby steps. Thanks so much, everyone for your concern and kind words, and help.

xo
ph

More Steady

2007-12-14T22:11:00.000-08:00

Not much new. Taking it easy this weekend. Waking up slowly. Keeping an eye on all the fragile things. Thanks for all the singing - We've been hearing it!
xo
ph

Long Day

2007-12-12T15:52:00.001-08:00

I'm here in Rosina's room, she's down in surgery. They're giving her a tracheostomy which is a tube for breathing so they can take the other thing out of her throat. (fyi - a tracheotomy is the incision, a tracheostomy is the plastic tube) Once she has that, she can wake up and get reacquainted with the daylight without having the thing in her throat (which requires sedation). It's much easier for her and it's still attached to the ventilator if she needs it. They are also giving her a tube into her stomach so they can deliver food there directly instead of continuing the IV feeding. Both the ventilator and the IV feeding, along with other things, can take their toll after a while. Assuming these things are working out okay, then she can continue to recover from all this stuff!

Later - after getting home. The first thing they had to do today, which they were doing when I arrived, was give her a new catheter in her chest. She's getting a lot of stuff intravenously and some of it can't be mixed, so they needed some new lines; they added three. It's a minor surgery that they do there in the room. Her hands and wrists are a bit swollen so it's not good for an IV line. They temporarily put one in her toe! Crikey! Then she went down to surgery to get the "trach" and the PEG (percutaneous endoscopic gastrostomy) tube. It's quite a job getting that bed and all the IV stuff etc. out of the room. She was in surgery for an hour or so and then back up. A lot of people needed to hook up a lot of stuff. By the way, I am continually impressed by the level of care that she's receiving.

But after she came back they did a routine chest x-ray and saw that there was air in her chest that was pushing her lungs to the side - it was probably from getting the catheter - so they quickly had to do another procedure there in the room to get the air out, and some fluid as well. So she's got another tube in her, in her side. Now there are eight, total.

But it's good she has the tube out of her throat and that thing off her head that holds it in place. She'll start getting some solid/liquid food directly into her gut and they'll start letting her wake up again. Again, we are proceeding slowly and with caution to get the girl going. When they did the last procedure, I don't know what she's aware of seeing, but she stared in my eyes for a solid minute. Then she closed them. I like her eyes.

Thank you all for your help and good thoughts and visits and everything that's coming our way, we feel lucky to have so many people close to us. Now do me a favor and sing!

xo
ph

Steady

2007-12-10T21:12:00.000-08:00

Just to let you know that she's holding steady and kind of the same since Saturday. Next move is to get her off the ventilator and give her some other ways to breath easier! I will post new news.
xo
ph

Better Today

2007-12-08T12:51:00.000-08:00

Rosina is responding to the treatment, her lungs are clearer and the amount of oxygen they need to give her has come way down. Now she needs to heal and get back up to the surface. A big challenge for her is that she's very weak from being in the ICU so long (almost three weeks). But otherwise, everything else seems to be working okay and there aren't any other outstanding problems.

xo
ph

as of yesterday, 40 days and 40 nights

Beauty and Power

2007-12-07T12:09:00.000-08:00

Rosina loves the ocean. When she was a teenager in Rio, she would swim way way out from Copacabana beach until she could look over the buildings and the near hills and see the Corcovado staute. Along the beach she could barely see her father walking in a white oxford shirt, just a speck. More than once, it was a long swim back. She knows the ocean is powerful.

A set back today. Again, as they slowly weaned her from the meds to let her wake up, her oxygen started to drop. I called in last night around 9:30 and they had started to increase the oxygen coming through the vent. This morning, her xray was cloudly, and they did another broncoscopy. There is more bleeding there. So she's back where she was, twice before, sedated and on the ventilator.

Hug your children!

xo
ph

Progress - Just Keep Swimming

2007-12-05T20:54:00.000-08:00

It's going slow, but it's going better. Rosina is waking up; it takes a while to clear out that sedation, and she is still on the ventilator but doing her own breathing. Caution has been the approach here so we still don't know when she'll be completely off the vent, maybe tomorrow, maybe Friday. I'm sitting here right next to here now and I'll say a big hello from you all. She's opening her eyes now and then and can hear us talking, so we're getting there.

My brother David has been out here this week and spent time here, a big help, and thanks to all the visitors who've come and sat and thought good thoughts. If you've been meaning to, there will be time, although it would be nice if there wasn't! Then she'd be at home hanging with the homies (because that's where the homies live). Thanks everybody.
xo
ph

Flat Rock

2007-12-02T22:28:00.000-08:00

Rosina has now been in the hospital for five weeks. She's been in the ICU for two weeks. She's hanging in there. I went over today and she's pretty much the same, which is good because she's improving. Her chest x-ray is looking a bit better. They are taking it slow as no one wants to get her off the vent and find she needs to go back on. Today the nurse said "She's going through a rocky part, but right now, she's on a flat rock." Resting, healing.

Nina and Will 2005
xo
ph

Not Much Change - resting

2007-12-01T16:44:00.001-08:00

Rosina has been holding steady the last couple of days. She is still on the ventilator, and all the settings and status of things remains the same. My brother John has been out here and spent a few hours out there yesterday, other friends also stopping in. It was like the Blog in person; people gathering around Rosina. She's not awake; however, I'm hoping she heard the voices.

By the way, I look forward to having a giant "The Blog in Person" party sometime in the future. Right now we'll keep the virtual one going. Otherwise, things are all right, and we hope to see her home for Christmas.

xmas '05

xo
ph

More Air, More Better

2007-11-29T20:03:00.000-08:00

Just very briefly, Rosina is responding to the treatment, and the oxygen percentage on the ventilator has been lowered to 30%, which is good, it means she is absorbing more oxygen. Her x-ray today was clearer. She's still out and on the ventilator. I was out there this evening and she's doing okay. On the transplant side of things, her White Blood Cell count is up to 10, so that's working. Thanks you all for the encouraging thoughts and words.
xo
ph

(unfortunately) More Woods

2007-11-28T22:47:00.000-08:00

I guess this is why we were treading softly. Rosina had a tough night last night. She was coughing and by morning, having a hard time catching her breath. Her oxygen count dropped, her chest xray was less clear than yesterday, and by midday, they had done another bronchoscopy and then they put her back on the ventilator. "Intubated". It is the same Alveolar hemorrhage that she had last week. I'm not sure if it came back or it never went away. It's a diffuse layer of blood inside the lung that makes it hard to absorb oxygen. The ventilator delivers more concentrated oxygen into the lungs and gets your levels up. She is steady now. She's is taking a couple of meds that are aimed at stopping the bleeding so that the lungs can heal. The doctors would say that this is uncommon, but they have seen it before. Also as before, she is sedated and basically out of it. Ugh.

Sitting in the back of my mind is the fact that this is a symptom not of the illness, but of the treatment. That's a pebble in my shoe. No one has made any errors, it just is that way. The good part of the treatment is that her marrow is great and all her organs are fine and she has no infections. The transplant has been successful with that. The rest we have to deal with and ride out.

A friend was working with the Rolling Stones once and he asked Keith Richards if they had any demos of the songs so he could prepare for recording. Keith faxed him back: "Improvise, adapt, overcome".

Think positive! (and overcome)
xo
ph

Tread Softly

2007-11-27T15:02:00.000-08:00

Day 18 since the transplant, 29 days in the hospital.
I spoke with Doctor Forman this morning. He is pleased with Rosina's progress, but is still cautious about her condition. He said that her marrow is doing really well and the numbers are way up, but this whole process must still be watched carefully. He wants her to stay in the ICU for now to make sure that her lungs are truly good, and stay on top of other things that need watching. So, tread softly.

Last night I sat on the edge of the bed at home, drank some water, pulled up the covers and adjusted the pillows. Right now, Rosina can't do any of these things. The six days that she spent "under" has made her very weak; she can't lift her arms. That's going to take some work to get that going, and she's having daily visits with a physical therapist. It's been difficult for her to talk, but that's getting stronger. Her new favorite activity is chewing ice, although she can't swallow the water. The doctor says that best case scenario, if all is going well, she'll be out in about three more weeks. We've always been told that there will be a big boring stretch of this hospital stay, let's hope it's starts soon!

Soon she'll be able to read the plethora of comments and notes and mail - thanks for all that.

xo
ph

Looking Up (with a ways to go)

2007-11-25T21:30:00.000-08:00

This is like a moment in a movie where the hero has achieved his goal, but is still stuck in a coal mine, or on a runaway train, or has to land the damaged space ship safely. Rosina was taken off the ventilator this morning at nine, and her white blood cell count had risen to 4.9 by the end of the day, a huge leap. Both of these are good and a relief to those of us standing by, but for her, she's woken up into a difficult time. Her body is sore, she's very weak, she can barely speak, and is having a hard time getting comfortable in any position.

The first two things she said to me were "My back" and "I'm afraid". This will all pass, but I know that for her, looking up, it's a long way to the surface. I told her that things were going well, to think of every calm, positive image she could, and let all the other thoughts slip away. I encourage you to do the same. In fact, let's all do that - think of one simple smiling image of Rosina and keep it in your head. I have a bunch. They tend to be surrounded by green or ocean.

She will most likely stay in the ICU for another day and then go back up to the Bone Marrow Transplant floor. The care in the ICU has been excellent and the nurses there are fantastic, both with their skills and their patience. As crazy as it seems sometimes, this level of health care is so sophisticated and really a privilege.

Will keep you posted from the edge of the woods.

xo
ph

An Exhale

2007-11-24T15:31:00.000-08:00

Yesterday I came down to see Rosina and all was basically the same. It's frustrating when there's really nothing you can do but wait. The hospital was pretty quiet. I went back up the hill.

I called in this morning and the nurse told me that they were planning to take her off the ventilator. I came down from Lake Arrowhead with my mother. Turns out they are going to wait until tomorrow (Sun) to take out the "vent" ("extubate" as it's called) but the news is generally good. Her eyes are open, she's squeezing my hand, and she can hear all the brazilian music I'm playing in the room. She has no bleeding, is doing more breathing by herself, and, very good news, her white blood cell count is beginning to rise. Today it's at 1.1. Two days ago it was at .2. We want it to get up to 4+. That's really why she's here - to see the donor white count go up. It's working. UPDATE: Later, same day - the white blood cell count is up to 1.6. Go white cells!

So many tremendous messages over thanksgiving, I read most of them to her. I know she'll read them all again. Thanks (for giving)!

xo
ph

Still on the Road - Day 13

2007-11-21T21:18:00.001-08:00

Not much change. The x-ray of her chest showed that there was still some blood there. They did a second broncoscopy and saw that the condition hadn't improved with the steroid treatment. So they've added Novoseven, also known by the name Coagulant Factor VIIa (recombinant) which is a coagulant. She is calm and asleep. And they tell me she won't remember this part. I'm glad about that. I talk in her ear and I don't know if she can understand it, but it's certainly a familiar vibration.

We have received a cornucopia of Thanksgiving invitations and thanks to all for that. Many wonderful offers. I wish there was one every day and we could just keep going to them. But we'll be going up to Lake Arrowhead tomorrow for our tradition of the last few years at the McDonald's house. We met Chris and Lupe in a birthing class before our first kids were born, 17 years ago. Give thanks, and raise a glass to Rosina!
xo
ph

PS Went to see her today - Thanksgiving - and she was still pretty much the same. A slight fever, but they believe her lungs are a bit better.

Hang Loose, Hang Tight

2007-11-20T22:47:00.000-08:00

Rosina is still in the ICU, and still on the ventilator. The results so far (that I know of) show that there was nothing in her lungs but the blood that had seeped in there, which means no infections - bacterial or fungal - which is good. It probably also means that she has Diffuse Aveolar Hemorrhage. It's a bleeding that occurs in the little sacks that take oxygen in to the blood. They don't know exactly what causes it, but it's certain that heavy duty chemo and radiation followed by an allogeneic bone marrow transplant make it happen. It occurs in about 5% of transplant patients and is one thing on a long list of possible complications that can follow a BMT. The treatment for it is steroids, and while it is a dangerous condition, it can be stopped and made to go away. Go away, says I. She is getting chest x-rays and they can see cloudy white indications that it is still there. As it clears up and she is getting enough oxygen by herself, they can start to remove the tube from her throat. This process takes about a day as you have to make sure the patient is gradually awoken and can breath by themselves before you remove the tube. I'm guessing it's not really comfortable, but it's also not uncommon.

She is sleeping peacefully. She was starting to get some redness like a rash on her arm which worried her a lot because she had a bad rash during her first round of chemo in July, but that redness seems to have faded away. That's good. She'll be happy about that. I was over there today and put on some music for her. It was one of her Brazilian music CDs from a few years ago, "Rosina's Sweet Brasil". Definitely comforting sounds for her. Play it if you got it.
My parents arrived here today to help out, it's great to see them. It'll be nice for Rosina when she wakes up. I imagine it's been hard for them to be so far away from us during all this. There are so many of us who drifted here to Los Angeles without much immediate family close by. In our case, it has been an incredible outpouring of friends and community and we are so grateful for all of it. By the way, I'm asked all the time about how I'm doing, and I'm doing fine! Busy, yes, but fine. Please direct your positive thoughts toward Rosina, she's the sweet little train going up the hill. All the comments and emails are great; thanks. Will keep you posted.

xo
ph

Day 10

2007-11-19T18:03:00.000-08:00

This morning Rosina was moved to the ICU. As part of her “vitals” - temperature, blood pressure, pulse – they also measure her oxygen intake. It is normally around 100% or maybe 98%. This morning it was at 78%. Dr. Forman was there and they started by giving her an oxygen mask. It brought the levels up, but without the mask, they went back down, which meant something is wrong with her breathing. They brought her downstairs to the ICU. They gave her a tube in her throat and a ventilator – a breathing machine - the whole deal. They did a bronoscopy where they look inside the throat and lungs with a camera and take pictures. She has some bleeding in her lungs. They’re not sure yet what it is causing it yet, probably some kind of infection – bacterial, fungal, etc., but the test results aren’t in quite yet. Her heart is okay (another possible reason for weak oxygen intake). They just need to be extremely careful and diligent because her body has no defenses right now. She is basically knocked out as is normal for someone with a tube in their throat. For a while they keep your wrists secured to the side of the bed so you don’t accidentally wake up and pull at the tube. They took those off.

Okay, update, Dr. Forman just came by (I'm in her room). He said that this happens sometimes, but not often, as a symptom of a transplant. But they don’t really know why. Most likely there is an infection that is causing the bleeding. They send the info from the broncoscopy to several departments to assess. An infectious disease doctor has been by, a cardiologist, and the doctor who did the broncoscopy. Dr. Foreman said that she has been doing well today and they’ve been able to lower the amount of oxygen that they’re pushing down to the minimum level, which is good. She will probably be on the ventilator until Wednesday. It’s an odd machine – it breathes. In fact, if I’m sitting on a stool next to her bed holding her hand, the vent on the side on the machine exhales her breath right on me.

So, it’s not a panic time, but nobody wants to go to the ICU, patient or visitor. From day zero (November 9th) to around day seventeen (November 26th) you are walking through some dry dry land. But – everything seems to be okay.

xo
ph

Long Daze (day 9)

2007-11-18T21:47:00.000-08:00

I was thinking that the last two entry titles were puns, but they're not, they're double entendres. All meanings are true for "The Weight" and "Long Daze". Those "days" have been tough, without much change. Rosina is still barely able to sip some water, has pains sort of like gas pains jab at her sides when she changes positions, and is still quite groggy from the meds. Unfortunately, she's not groggy enough to sleep very much. I spent the night in her room of Friday and she really only slept for ten or fifteen minutes at a time. It's a long night for all. Sandra was there last night (again) and it was the same. Rosina now has a standing order from the doctor that if none of us are staying there, she'll have a sitter who watches her all night and helps with whatever. I believe all this should start to taper off this week. So far there are no negative reactions to the transplant, but it will still be another week or five days before the white blood cells start appearing. That will be good. I will be out there tomorrow for the night. Keep you posted.
xo
ph

The Weight - Day 5 & 6

2007-11-14T18:00:00.000-08:00

Everything is difficult, yet okay. Day 5 & 6 refers to the count of days since the marrow transplant, the day of getting it being "day zero". She's actually been in the hospital for 18 days so far. Rosina is riding it our right now, confined to her room with a white blood cell count of 0.01 (aka 0). The nasty mouth and throat thing is called mucositis and is common with chemo, more common with chemo and radiation, and very common with people who are having bone marrow transplant treatment. She is at "stage 4" which is qualified by the fact that you cannot swallow. At all. You cannot swallow a sip of water. Talking can be quite difficult. The whole thing lasts about ten days and she has about five more to go. It's obviously unpleasant, although it was worse a few days ago and the doctor says that her mouth looks pretty good, considering. Someone comes by every eight hours to do a mouth treatment which consists of swishing a bunch of medicines and then spraying some stuff in there. She still has the morphine drip, which is the normal pain medication for this, and it has evened things out for her, although it certainly makes you less than alert. Several of us are taking turns spending the night in her room mainly because she can fall alseep at any time, including when she's going to the bathroom. Extra double plus thanks to Sandra and Ann for taking on that duty.

A couple of nights ago at 3am she had a strong pain in her chest and they did an EKG and a chest x-ray there in the room, but it all turned out normal. It's hard to get more than a couple hours sleep at any one time, though. I was not feeling well yesterday morning and have not been out in the last two days; you have to be very cautious.

Nina and I went to see Caetano Veloso, a Brazilian singer, last night, and we called Rosina four times so she could hear the music over the phone. She sang along. All in all, she is hanging tough, forging ahead, and gaining ground in her road trip. Thanks all, for the support.
xo
ph

Inspiration for Rosina

2007-11-11T20:30:00.000-08:00

I'm reprinting this Corcovado picture because I found the perfect companion for it - two things to look forward to seeing. love you m
ph

Today is Taking Forever

2007-11-11T12:21:00.000-08:00

That's what Rosina said to me this morning around 11am. So far, everything is "normal", which means pretty unpleasant. There have been no signs of infection or toxicity which can occur with a transplant, but there is nausea and pain. The nausea has subsided a bit. Chemo and radiation affects fast growing cells which are cancerous cells, but also cells in your scalp, and your mouth and throat. Her mouth and throat are very painful as they take a hit from the treatment and then you don't have the white blood cells to repair them. It's a typical complication and lasts for about ten days. She has a morphine drip and is laying low. So many drugs! Sheesh. There are probably about ten or more active things going in her body during a typical day. She just needs to exhale and float down the river. Thanks for all the good thoughts.
xo
ph

Day Zero - November 9

2007-11-09T14:12:00.001-08:00

This was earlier today when Rosina got to video chat with Brasil. Honestly, it was one of the few smiles of the morning. Lots of anxious tears surrounded it. Rosina is getting the bone marrow transfusion as I write.

The nurse went and got “the product” in this cooler labeled “BMT”. It’s a Coleman 8, which I think means that it can hold eight beers. It can also hold two bags of product. Without much fanfare, they did the two nurse crosscheck, which I like to call the “missile silo routine”, to make sure that she is who she is and it is for her, and then they plugged it in and it ran into her chest. She took a nap.

The donor bag is hanging on the left side of the IV stand. It's the big one with the red stuff. There are actually two bags for a total of about 1000mls, or four units of blood. An hour or so before it started I told our friend Jim that when they do it, light would shoot out her fingertips and a golden fan would appear behind her head, and he replied, “Doesn’t she do that already?” Yeah, she does.

Her white blood cell count is at zero right now. With her previous chemo, they got knocked to zero and then came back up. This time, her own cells cannot come back up, but the new ones will. It will take a couple of weeks just to start coming up.

I was looking at the label on the bag and noticed a couple things. One, the identity of the donor is not shared for a year, but – clue - I see that this marrow is from the British Bone Marrow Registry, and two, below the “O” blood type, it says “Rh Positive”, which is nice when your initials are “RH”!

Thanks everyone for sending your positive thoughts, prayers, juju and mojo!
xo
ph

Not Quite Day Zero After All

2007-11-08T14:17:00.000-08:00

It's Thursday at 2pm and the bone marrow transplant had been scheduled for today. Due to travel time for the delivery of the "product" as they call it, Rosina was told that the transfusion/transplant would take place at 2am Friday morning. Now we have just heard that due to a flight delay, the transplant won't be arriving until tomorrow morning at 9 or 10am, so the transfusion should happen sometime around mid-day. It's kind of uneventful, it's truly like getting a transfusion, but Rosina's ready to do it. She hasn't been feeling too great and is just laying low, hanging out right now.
xo
ph

Minus Two

2007-11-06T19:22:00.000-08:00

This was ten days ago. I cut my hair three days ago after an entire year. Phew!

Just a quick update. Rosina has finished her chemo and her radiation in preparation for her BMT. She's been feeling a little better but has this lingering nausea and really hasn't eaten much at all for the past week. They have her getting all kinds of liquids and stuff so that's not a big problem. So in any case, she hasn't had any complaints about the food. There have been visitors, and thanks to all of you who've trekked out there. A got a call today from the blood donor place that she tested positive for antibodies which means that she can't get platelets from just anybody, it has to be a type match. Because she has no local blood relatives, they will call in regular donors who have that type as well as buying it from the Red Cross. If you are interested in donating platelets, it's unlikely you would match her, and they don't even check your type until the 3rd time you've donated, but they can always use both blood and platelets. there's a link up on the right.

Here's a picture of the sign that greets you when you get off on Rosina's floor. I'll be out there all day thursday and friday as well. Thanks for the mail, email, notes and comments, all are appreciated.
xo
Ph

Day -7 (minus seven)

2007-11-01T20:00:00.000-07:00

Rosina is getting a radiation treatment called TMI and I couldn’t remember what it stood for, so I googled “radiation TMI” and what came up was a whole lot about Three Mile Island. I don’t think she’s getting Three Mile Island radiation. It actually stands for Total Marrow Irradiation. Unlike Total Body Radiation, which is a common treatment in preparation for a Bone Marrow Transplant, this treatment pinpoints the areas that it needs to hit, and takes it easy on other parts of your body, like your organs. It uses the 3D map of your body that’s created by a CT scan to program where all the thousands of radiation “beamlets” are focused. You know how when you get an x-ray at the dentist they put a lead blanket on your chest and then the assistant goes behind some kind of Superman-proof wall for safety and they take a snap shot for 1/125th of a second? Here you’re getting that x-ray for an hour and a half - twice a day. However effective, like most cancer treatment, it stinks.

Rosina has been through two sessions a day for the last three days with one more day to go. She’s also getting chemo. It’s making her feel nauseous and achy. She hasn’t been eating, and she’s disappointed as the last two times with the chemo were much easier. This treatment is much stronger.

There is a plethora of drugs for allergies, sleep, pain, nausea etc., and frankly, when you’re doing this, sleeping through it isn’t such a bad idea. She’s hanging tough and will blow through this thing!

The nurses have been nice, you see the same ones much more than at Cedars. There are a lot of people at City of Hope who have been through some kind of cancer treatment there and they are loyal.

Visiting is a bit more sanitary – you need to wears a mask and gloves when you go into rooms on her floor. If you are interested in visiting, the best thing is to give her a call on her cell phone. But, just so you know, she could be sleeping while you’re there – no promises. The visit still counts. There is a link to visiting COH up on the right as well as maps etc.

Thanks as always for all the nice words and notes!

xo
ph

Cry Cry Cry

2007-10-29T17:38:00.000-07:00

We had so much stuff to do yesterday to get ready to come to the hospital that we did the obvious - went to the beach! And if you are about to spend 45 days in the hospital, I recommend it highly. Bella and John instigated it and we followed. It was a bit windy but refreshing as always. We ducked behind the dunes at our friend Susan's house and had a picnic. And finally we were rewarded with an amazing sunset as the low low tide left shallow pools of water that reflected the sky brilliantly.

We got to City of Hope at nine this morning and Rosina did a Red Cell Exchange. She was hooked up to a machine that took about 1200 milliliters of A+ blood out of her body, and replaced it with six units (about a pint each) of O+. This is to make the transition easier to the new blood she'll be making, after the marrow transplant, which will be O+. The O+ is shown in the two bags in front, the bag in back is all the blood they took from her skinny body! By the way, by using her height, weight and gender, they calculated that her body holds 3,333 milliliters of blood. Using this same formula, I believe I am holding about nineteen gallons. I'm like a keg of blood. A blood sausage. How come my wife who has Leukemia looks ten times better than me? And thank God she does.

After that she was admitted and we went up to her room. It's on the sixth floor of the Helford Hospital building and looks north toward the mountains. As I sit here now by the window, the sun is going down and it looks pretty nice. The other side of the building looks at concrete freeway structures and giant power lines, so we lucked out.

Along with Chemo, Radiation begins early tomorrow, the very same radiation that created the Fantastic Four, the Incredible Shrinking Man, Spiderman, and a lot of other amazing people who were strong, unique, and wore colorful garments. Rosina already is all this, so I'm trying to imagine how astounding she'll be coming out of there.

re: Cry Cry Cry. I think I put that there more in the tone of a bittersweet song title than an active verb. But it does come and it waves through you and little things can trigger it. Last week, Rosina was talking to Dr. Forman and he asked how she was doing. She said she'd been a little teary, and then he slid his chair just a little closer which made her burst into tears. It don't take much. I think we all need to slide our chairs a little closer!

xo
ph

PS See below for blood donor info.
PPS Visiting info next post

I Want to Suck Your Blood (Halloween edition)

2007-10-29T17:00:00.000-07:00

Here's some info about donating blood and platelets for Rosina and City of Hope.

1) City of Hope uses 30,000 units of blood a year and only 58% of that is actually donated at City of Hope. The rest is purchased or comes from the Red Cross. So they always need blood donors of all types.

2) Because of the blood type of Rosina's marrow donor, her blood type is changing from A+ to O+. This means that a "directed donor" for her should be O+. If you would like to donate blood for her, you need to be on her directed donor list, which contains your name, phone, and blood type. Being on the list doesn't mean you have to donate, though. You would also need to do the donation at City of Hope itself. (See link on right for directions and map). Whole blood is good for 35 days. If you want to be on the list, you can email either one of us, or if you don't have those addresses, my email for this blog is whatsupblood@gmail.com.

3) Donating platelets is not related to blood types and any type is a match. If you want to donate platelets for Rosina, know that the shelf life of platelets is only five days, two after they do the tests, so getting the timing right is difficult. Know that you would be helping the cause in general just as someone else is for Rosina. Also, donating platelets can take two hours.

There is a link up on the right side of the page for giving blood at City of Hope as well as the directions. City of Hope is east of Pasadena in Duarte. It's about 40 minutes from our house Hollywood.

The phone number for the Donor center is (626) 471-7171
xo
PH

This thing is used to warm up the blood before it goes in your body. The tube the blood travels through is wrapped around the outside. I believe it's Hammacher Schlemmer's "World's Best Blood Warmer"

Getting Closer

2007-10-25T20:19:00.000-07:00

This is not California wildfire smoke, it's the Corcovado statue in Rio peeking above the clouds. We have not been anywhere near the fires that burned this week. They are getting under control now. But as I drove home tonight over Mulholland Highway, a full moon rose over the hills, orange like a pumpkin through the distant smoke. That sounds like a sentence from a tenth grade english essay. Not that I ever completed one. Here's what I wrote earlier this week:

Tuesday, the 23rd
Not much new news. We’re sitting in a doctor’s office right now at City of Hope. Rosina is getting the dressing changed on her arm and talking to the Brazilian Nurse about the difficulties of learning medicine in another language. She had a hard time learning “Chicken Pox”. It was too bizarre.

Rosina has to do a bunch of tests that she already did, since her admitting was pushed a month. Today is Tuesday, she needs to come back on Friday for some things, and then Monday the 29th she comes to stay for a while. That is referred to as Day –10 (minus ten). Day zero, Nov 8, is the infusion of ”fresh donor marrow” (it’s organic!), delivered as a transfusion. Before that, radiation and chemo to create a clean slate for the new bone marrow. I know we all think of bone marrow as the spongy stuff inside a bone (which it is) but the transplant is really a stem cell transplant. This particular treatment for Leukemia is one of the leading treatments using stem cells. (see primer below)

The extra month that she has had at home has been nice, but the gap in her treatment has made the anticipation about getting back into it a bit greater. And this is the toughest part coming up. The support from all of you has been great, all our carpools etc. have been working well, and the never-ending help from Sonia (who turned 40 today [the 23rd]) makes it all work. I’ll have some more regular posts as we move forward and thanks for all.

xo
ph

*********************************
PS What’s the deal with stem cells you ask? Cells in your body have particular tasks – skin cells, cells around your heart, blood cells etc. Stem cells are cells that have not received an assignment yet - "undifferentiated" - which is what makes them so powerful. The potential is to be able to program them to do specific tasks, like grow new heart tissue, or repair the coating around a damaged spinal cord, treat diabetes and all kinds of things. Stem cells can also reproduce without end. It’s a pretty amazing tool. The controversy is not about stem cells themselves or the treatments, it’s because the most robust stem cells, needed for research, are produced by embryos - fertilized eggs. They are undifferentiated cells. Once you have the stem cells, they keep reproducing by themselves, and with enough stem cells, you don’t need to use more embryos. Ethical issues aside, there are legal/political inconsistencies as fertility clinics, for example, are permitted to discard thousands and thousands of embryos, but they are not available for research. Anyway before I ask you to attend a march and let you crash on my futon, Rosina’s stem cell treatment is not controversial but simply a medical miracle, difficult as it is. She will rock the house.

An Apology to All Husbands (and Update)

2007-10-01T20:40:00.000-07:00

Of course you love your wife. Of course you want to help her if she's in need. NO, YOU DO NOT NEED TO DO A BLOG TO PROVE YOU CARE. Please make sure your wife sees this before I get into more trouble with Husbands of the World. I like writing (unless I'm getting paid for it and then it's torture), I like taking photographs, and yes, I love my wife. I also like all our friends and family members who just want to know what's going on. Hence, the blog. Anyways...

This is the first week since early June where Rosina has not had a single doctor appointment, although treatment continues. [ed. note: Wrong! She has an appointment on Friday.] Last week, she had three consecutive days at City of Hope. Monday, she met with the pulmonary doctor and with the infectious disease doctor. She also spoke with a social worker who wanted to make sure that Rosina had a circle of support - I think so. Tuesday, we both took a class in taking care of the Hickman catheter that is going to be placed in her chest. It's a tube that goes into a major artery near your heart that gets used for IVs, medication, drawing blood, etc. Unlike the PICC line she currently has, it requires more maintenance. The whole process sort of reminded me of when I helped my father bleed the brakes on his '52 MG TD. You just don't have to get on a car creeper to do it. We also had a visit with Dr. Forman who decided to postpone Rosina's bone marrow biopsy until she was closer to being admitted for the transplant. That was kind of a relief. Rosina appreciated it as she'd already taken the ativan and vicodin on the way there. The donor has committed and will do his part on November 7th. Rosina will get the transplant on November 8th. On Wednesday she had to go in for an outpatient Broncoscopy because of some spotty things that showed up on her lungs in both her CT scan and an X-Ray. That was a four hour visit with general anesthesia. They think that it might be a fungal infection, but so far the tests haven't shown anything. When your white blood counts are low, it's easy to get stuff like that. So far, no alarm. She is, however, taking a medication for it that messes with your vision temporarily. BTW - please check out Steve Martin's essay on side effects. If you've ever taken medication, and I know that you have, you'll enjoy it.

The next big visit is on October 16, another day of assorted poking and prodding. It'll be the same thing the following week and then getting ready to be admitted for about six weeks. So, a little free time here, probably not much blog activity, and the opportunity to relax and even go out to a restaurant while the counts are up. Rosina is feeling okay, taking it easy, and appearing here and there. People ask if I need anything, all I can say is "red wine".

While Rosina is out there with her fuzzy little head, I haven't gotten my hair cut since last Thanksgiving, when the kids buzzed it off on camera while we were making a movie in Lake Arrowhead - an annual tradition with our friends the McDonalds. So I offer this picture of my wife's beautiful noggin, and my scary one.

xo
ph

Back at City Of Hope

2007-09-19T21:36:00.000-07:00

It's starting to feel like Astronaut Training Camp. Rosina was out at City of Hope yesterday and today getting "labs", "consults', "pre-op" and being fitted for a custom body cushion that will hold her perfectly still while she gets radiation. That alone took about an hour and a half, which was pretty good because they said it would be two and a half hours of lying on some silicone inflatable with her face covered with mesh material to keep her head from moving and at the same time giving her four permanant pin-point tatoos to use as reference points for the radiation. That's when I start wondering when are they going to put her in a centrifuge to measure how well she takes the G's during liftoff. Rosina is doing a clinical trial, of which they do a lot at City of Hope, with a type of radiation treatment, called TMI, or "timmy" as I like to say, that doesn't irradiate your whole body, it pinpoints where it needs to work. It's a new treatment and is less brutal on your body. She did have a consult with Dr. Wong, who is the boss of radiation who told her all about it. And if you've ever had surgical treatment, you know that they always do this worst case scenario talk which in your mind becomes Very Likely Case Scenario even though you know it's not, but it scares the crap out of you. The great one about radiation treatment is - it can give you cancer! Anyway, I'm just purging that thought here, because we don't think Rosina is anywhere near any of the worst case scenarios, and in fact, expect her treatment to go well.

The treatment itself, however, has been postponed for a month. There are a lot of timing issues that go in to a Bone Marrow Transplant. Radiation has to be done at specific intervals, and the machines that are doing this specific treatment can get booked up. Also, a CT showed something that could possibly be an infection in Rosina's lung, and that has to be declared clear, and the other big timing issue is the marrow donor himself. Once the stem cells are "harvested" from the donor, they need to get into the recipient within around 24 hours. And in this case, that includes flying it from europe (we think). So you need to be ready for that and your prior treament (radiation and chemo) has to be timed just right so you are ready. Basically, you get a date from the donor and then back up ten days to start the treatment. And they could change their minds and/or plans. As of today, the long City of Hope stay is scheduled to commence October 29th.

Next week she's back to City of Hope for more prep stuff. Meet with the lung person, take a class in how to care for the Hickman catheter that has to be installed in her chest, see the doctor, and get a bone marrow biopsy to check on the leukemia remission status. Every one of those things is a big deal in itself and she has to do about fifteen of them just to get ready for the BMT. I say, I say, damn, girl! How'd you get so fly? It's a bit overwhelming, but she's hanging tough. The schedule change is a drag as that will now take her treatment up close to Christmas, but without any other schedule changes, she'll be home then. Thanks everyone for the kind words on locating a donor. That's a big step.
Please excuse the joke, but it's pretty true. Z - I'm very proud of you and how you're going through this, and you look bithcin', by the way. Keep it up, I'm with you.
xo
ph

Fall Colors

2007-09-11T18:45:00.000-07:00

I remember one point during this process, during a week of fear and joy, a week of intensity and closeness, a week of mortality, that I thought to myself: I love feeling these emotions – when I’m watching a movie! Honestly there are many times that I am reminded of a headline I saw in the satirical newspaper, The Onion, right after 9/11 which read “Shattered Nation Longs to Return to Meaningless Bullshit”. We don’t really long for that, but I certainly understand the feeling. Two things happen though: you decide that you don’t want the stupid stuff you used to occupy yourself with, and, maybe some of it wasn’t so stupid after all. Hose it down. In any case, it’s rich.

Things have started picking up. I am sitting right now at City of Hope. We are here for a full day of testing and doctor visits – ECO, EKG, blood, lung test, chest x-ray, doctor visit, consent forms, CAT scan. I told Rosina she’s getting more medical treatment in one day than I’ve had in ten years. She said “I want your marrow.” I want your marrow? Is that hot or what? I wanted to French kiss her right through the face mask she’s wearing. The good news is that all of this is in prep for getting a bone marrow transplant, for a donor has been located! All we know is that a 44 year old male somewhere out in the world has a tissue type and stem cells that closely matches Rosina’s and he's willing to share. Wherever he is, he has come in to give blood and to continue the testing, so it looks like we’re on. Yea. (and) Holy crap.

Here’s the schedule. Because we’ve located a donor, Rosina can skip the next round of consolidation chemotherapy that we were planning on. She still has to do chemo before the transplant, though. She will need to come out here for two or three more visits for various things, and then on September 30, she will check in at City of Hope and begin radiation and chemo. Ten days after that begins (after her own body’s ability to make blood cells has been wiped out!), on October 10, she would receive the transplant. This is referred to as Day Zero. From that point you’re looking at 4-5 weeks in the hospital. As she told me on the phone yesterday, “I go in September 30, and I come home before Thanksgiving”. It's a long and intense stay. We saw the rooms at the hospital at COH where she'll be staying. It's really nice and in fact so is everyone we dealt with. You get the feeling that they really want to work at that specific place.

The transplant itself is pretty simple. It’s delivered as a transfusion. Then the new stem cells have to find their way around, get comfortable, and start making more cells. Basically you are getting a new facility for making new blood. It can even change your blood type. And in this case, it will. Rosina is A+, and the donor is O+. That means that Rosina’s blood type will change to O+. In fact, before the transplant itself, they will begin to change her blood over to O+ to make the transition smoother. They’ll literally swap out her blood for some O+. Additionally, it will change her chromosomes from XXY (female) to XY (male)! This has no symptom or effect on a person, it’s like changing a tag on a shirt. However, in some way I suppose it will mean I'm married to a man and gay, which is good, because i'm kind of a slob right now.
Rosina is being strong, she is doing well, and as tough and scary as all this is, things are progressing. We’ve received so many good thoughts and wishes for Rosina since school started and tremendous offers for help, thanks to everyone for that, you may be called! So here's to enjoying the next couple weeks while she's at home and I'll keep you posted.
Thanks
xo
ph

Late Sunday night

2007-09-10T00:44:00.000-07:00

Rosina has been recuperating at home this week and her blood numbers have been dropping. On Wednesday, she needed a blood transfusion (she got my blood), and on Friday, she needed a transfusion of platelets. On Sunday she went in to get blood drawn and she did not need to get another transfusion. All this is done via a PICC line in her arm. It's a tube that stays in your arm and has two small valves on it. She's had it since the end of June. They can they use the valves to draw blood, and give you IVs of just about anything - chemo, antibiotics, liquids - as it's a direct line into your bloodstream.

She has been doing well. My brother and sister-in-law, David and Mary, came out for the weekend and have been a big help, especially because I had an overnight trip for work - to Hawaii(!) - and couldn't be here.

Tuesday we may have some info on a possible bone marrow donor. Don't know the details yet, but some things may be moving forward.

xo
ph

How I Spent My Summer Vacation

2007-09-03T16:17:00.000-07:00

School is starting for our three kids and I'm guessing that many people will just be finding out about Rosina's condition, so I thought I'd make a little recap of the summer for those who aren't up for reading the whole blog. Newer news is following.

Big Chunky Emotionless Version of the Story:
Toward the end of the last school year, Rosina had a pain in her side and went to get it checked out. It turned out to be nothing, but in the course of getting a normal blood test, it was revealed that her white blood count was very low. A series of blood tests and other stuff followed and on June 5th, she was diagnosed with Myelodysplasia, which was rapidly becoming AML or Acute Myeloid Leukemia. This is a type of fast growing leukemia that requires quick action. She went into Cedars on June 25 and stayed there for 31 days getting induction chemotherapy. She then came home for one month, then returned to Cedars for five days for a round of consolidation chemo. She has now been at home for week. She is looking at another round of consolidation chemo at City of Hope in Duarte, and then after that, the plan is to do a Bone Marrow Transplant which is a month to six week treatment also at the City of Hope. She is generally feeling fine and the treatment is going well. Now, for all the details, and my own little Leukemia tutorial, I invite you to read the posts below. They are in reverse order, though, so for the full reading experience, go all the way to the bottom and click on "old posts" and start from there. I promise that you will learn some things about leukemia, Rosina, and me. It's been quite a summer.

On the new news front, we went yesterday to the cancer clinic at Cedar's for blood work and all the numbers that we follow are going down, which is bad for you, but that's what the treatment is. White blood cells, hemoglobin, platelets, neutrophils, all dropping but she didn't require a transfusion which was nice so we didn't have to stick around. The best news of this past chemo round was that the dreaded rash that she got during induction didn't return. This time she was given some steroids which seemed to keep it away. There was a lot of trepidation about that rash as it was easily the toughest part of the chemo, and it hasn't reappeared. Unfotunately, due to the steroids, Rosina is ineligible for the Tour de France and her shot at the home run record is also out the window. She can, however, bench press 180. It has been super hot here in Los Angeles so everything has been slow and that's been okay. Everyone is getting ready for school by denying it completely. The carpool to Santa Monica has been tricky as Rosina can't be driving around, but our carpooling friends and neighbors have been picking up the slack - thanks so much for that, it's huge! We didn't really have a single day of regular summer activity, certainly no traveling or anything, but we have been able to see a tremendous amount of friends and family, all of whom have been very helpful.

Tomorrow she goes back for more blood work and possible transfusions. Tuesday the 11th, it's back to City of Hope for an appointment with Dr. Forman.

Thanks all for the comments, calls, emails etc.

xo
ph

...and Back Out Again

2007-08-28T00:47:00.000-07:00

Rosina left the hospital yesterday night, about 12 hours after her last chemo treatment. She is now doing a home recovery. The real effects of the chemo start to kick in after you've actually finished getting the drugs, so she'll be recuperating at home and then going into the doctor's office almost daily for blood tests, transfusions and stuff like that. Her white blood cell count is dropping, then it will stay low for a bit, and then come back up. There will be some recovery from this and then most likely back to the hospital, this time City of Hope, around the second or third week of September.
More later
xo
ph

Back In

2007-08-23T13:51:00.000-07:00

Well, we returned to the hospital yesterday, to the familiar fourth floor. New room this time on the other side of the hall and closer to the elevators. It's not a "positive pressure" room which has a little anteroom, so the door just opens out into the hall. I'm not really sure why so many people keep their room doors open. For the semblance of company I guess. But walking down the hall and looking at a bunch of strangers' butts hanging out the back of their hospital smock doesn't make me feel better which is the whole reason we're at the hospital anyway. The people that should be exposing their butts are the ones that are already getting paid for it, and I'm not seeing them on the fourth floor at Cedars. Rosina has a very nice selection of tops and sheer pants that she uses for pjs. She looks good.
She was at the hospital for so long last time we practically had a kit going in this time. All the pictures for the walls were together, all the bedding was packed up, we know exactly the right water bottles that are good for drinking in bed, and where the microwave is. Unfortunately, there are also many other things that she is familiar with, like someone trying to draw blood and having a hard time poking her arm, having a bunch of simultaneous IVs, taking a variety of drugs for a variety of symptoms, and the general overriding idea that you're there to abuse your body in order to keep it going.The comfort of knowing what to expect is easily countered by the dread of knowing what to expect. Luckily, this stay is much shorter and the chemo is given in a broken pattern that may be a bit easier.

Rosina will be needing blood (and platelets) again. Her type is A+. If you are so inclined to donate you can do it at Cedars as a directed donation in her name. I believe the Cedars blood donation center is listed in the links on the right. There was a great turn out last time and she was able to use only blood that had been donated for her. It's a nice feeling, and maybe it means you're all related to her now. But we already knew that.

The month at home was nice with more visitors and some good weather. This past week, our friend Zélia has been here from Brasil, and that has been great. We had a fun music night here last week with lots of singing and multi-generational playing. Over the years we've assembled more than a band's worth of instruments in the living room so it's great when they get used.

Thanks for all your help and if your interested in making food for Rosina - she has a fridge!

I love summer and I hate to see it go.

xo
ph

New Hospital Date

2007-08-18T09:17:00.000-07:00

Rosina will be heading back to Cedars on Wednesday the 22nd for about a week. She can have visitors etc! Nina returns the day before.

This picture is from 2003.

xo
ph

Walk Through The Fire (over and over)

2007-08-14T22:15:00.000-07:00

Z in Paraty, Brasil, one year ago. The name of that boat is "Minha Deusa" - My Goddess. Now there's a god that's easy to understand.

We both are struck about the odd nature of this disease. Mainly, the symptoms are slight, no broken bones or anything, but the treatment is heavy-duty. So as Rosina has been home for three weeks, the weather is nice, people have come to visit, the feeling that there's still something to deal with is easy to set aside. And you try to. But today, we went to see Dr. Forman at the City of Hope and the reality of being right in the middle (or first quarter) of this thing was brought back. The treatment plan that he outlined is long and involved and has variables.

As I've mentioned a few times before, Leukemia does not go away with one round of chemotherapy. Even though you are "in remission" within a matter of months it will most likely return. So the "consolidation" therapy (more chemo) is kind of a given in normal treatment. The best case scenario would be that after the first round, you would have a Bone Marrow Donor lined up, and you could go straight into that process. That's not the case for Rosina, as no donor has been located. So the next step is to do consolidation which is a lighter chemo treatment. Rosina will probably return to Cedars-Sinai sometime next week for about a week.

And then after that, she will most likely do it again. Here's the reason. There are two kinds of bone marrow transplants, one is from another person (allogeneic) and one is from yourself, using your own stem cells in your blood (autologus). If you get bone marrow (which is stem cells) from another person, it is harder for your body to accept, but once it does, it has a higher success rate as you know there is no leukemia in the new blood that is being produced and in fact, it can fight the old stuff. To do an autologus transplant, if for example no donor can be found, they draw stem cells from you when you are in remission - in this case, after your third round of chemo. You get the stem cells as your white blood count rises, this is when there are more of them present. These cells will be used for your bone marrow transplant. Still with me? Then, before you do the actual transplant, you receive radiation and chemotherapy. It is the strongest treatment in the whole process, and this flat out kills your bone marrow. It will not come back. This is when you introduce the stem cells you already got from yourself. It saves you. After I stared at the doctor for a moment he said "We do this all the time." I sure as hell hope so. Actually, we feel very confident and comfortable with all our doctors and they are all encouraging. So I said to Rosina "It'll be okay, you just have to walk through the fire." And she replied "Over and over." But we've both found that being positive about all aspects of this, from all sides, is the most helpful simple thing we can do.

So...more simply. She'll be going to Cedars for about a week starting sometime next week.
We go back to City of Hope second week of September.
Probably do another consolidation round and "harvest" stem cells.
Then when it's time to do the transplant, it will be a month to six weeks at City of Hope. (!) As our friend Prudence has said many times about thing that seem to have no ending "It's a process".

My parents were out for the weekend and we had a really nice time with good weather and no plans. Nina is back next week, and school looms. Thanks, all, for your support, I hear from people all the time that they just heard about Rosina and the blog and they were able to catch up. Feel free to point people here as it's helpful for all of us. Our friend Allee who wrote " it's more than I've ever known about anything anyone else has had. I would have thought that would have been scary but it's quite the opposite. Very comforting to have information so I can really understand what's going on." I've heard lots of comments like this. We will stay online. Thanks.
xo
ph

Remission

2007-08-04T08:44:00.000-07:00

Rosina had a bone marrow biopsy on Tuesday and the results are back. They see zero "blasts" - which are the bad blood cells and she is officially "in remission"! This is a big weight off our shoulders as it means the initial treatment was successful. While that test was to confirm what we'd already been told, there's always trepidation before the test or before hearing the results, so it's a relief.

I forgot to post this picture that I took with my phone when I was leaving the hospital. It was right before they said she could go home. Look in the middle in the background. Dim as it might be, it is extremely unusual to see a rainbow in Los Angeles in the summer as we don't get rain from April to October - and I mean no rain - except we got a twenty minute shower this day. Rosina reminded me that it was perfect for the blog: No Rain, No Rainbows.
She's been home for about ten days, and the relaxation of being in your own bed is also tempered by the fact that people aren't coming to check on you all the time and there are a bunch of other, loud, people around, but it's been nice and certainly it's where she wants to be. She's feels fine generally, just taking it easy, doing a few things here and there and gaining some weight. She lost some weight when she first got home which was being maintained by an IV, but she's gained it back. By the time her hair fell out, she'd started growing new hair, so she's got this blond fuzz. Actually blond - not white, not gray, blond. Last weekend my brother John was here with Margo and Jeb from New York and that was great and very helpful. Nina was also here for two days before she jetted off for more summer.
So what's next? The standard procedure in Leukemia treatment is to follow up the "induction" therapy, which she's completed, with "consolidation" therapy. It's another round of chemo which can be an outpatient treatment where you go to the office everyday for the treatment and then you go for daily blood counts, or it can be in the hospital for another week to ten days. It's not as heavy duty as the first round. Once you've gotten rid of the "blasts" that you can see, there is (presumably) stuff you can't see. That's what you're going after. We don't know yet what we're looking at. Despite having a procedure to all this, there's still a lot of "wait and see". Which is as it should be.

The next part of the program is the bone marrow transplant. The search is on. As I mentioned before, the NMDP did not have a match. They also contacted REDOME in Brasil which also did not turn up a match, but people are always being added so they keep checking back. The BMDW (Bone Marrow Donors Worldwide) has turned up one possible match. They have contacted this person (who is in Europe) and are in the process of checking it out - it takes a little while. They are also looking at cord blood. There are organizations that offer a service of collecting and keeping blood from umbilical cords when babies are born. This blood is rich in stem cells and and is stored (frozen) simply for the purpose of helping someone, presumably the baby. If you go have a baby these days, it's a service that they usually offer to you. We did it with Will in 1999. It is also available as a source for bone marrow transplants. It is extrememly unlikely, though, that Will's would match Rosina.
When I spoke to Mei, who is conducting the donor search at City of Hope, she told me that many people who are on the bone marrow registry signed up because of someone they knew who needed a transplant, but rarely do they match. But this fills up the registry and perhaps one of these people will be a match for someone else. If you'd be willing to do this for Rosina, I encourage you to sign up (link on right) - it's really a "do unto others as you would have them do unto you" opportunity.
Will has been busy showing us magic tricks and balloon animals he learned at camp (a good fallback profession if the poetry doesn't work out), Nina is in Ireland, and Jake got a job! Jake is working for a website doing internet research on the internet about the internet - and getting paid. It's perfect.

The show of affection and generosity has been great and so has the response to the blog. As a few people have pointed out, it has created an invisible community of sorts that generates lots of positive thoughts. It kind of forms a circle around Rosina, around all of us actually, and it has meant a lot. It's also been so helpful for us to know that people are informed and I can point them here to catch up! Thanks to you all for the response, the blood donations, the food and everything else. It might be a little slow for now, which is good, but we'll keep everyone up to date.

xo
ph

She's Out

2007-07-24T14:11:00.000-07:00

Now I get what this whole thing is about. It's a plot. Rosina will go into the hospital just as long as it takes for me to say out loud "Damn I Miss My Wife". The second I say that, she'll be free to go. And that's what happened. This morning, her WBC was 4.2, aka normal, and when the doctor came in to see her, she said "You can go home." And, after bursting into tears, that's what she did. Our friend Pearce is at the house, and he and Amy helped her pack up and she went home! Then she snuck over to Dreamworks, where I'm working, to surprise me. And she still has some hair.

She gets a few days off, and then next week she'll need another bone marrow biopsy to check/confirm her condition. Then, while waiting for a Bone Marrow transplant match, she'll need to maintain her current condition possibly with some hospital visits. So, not out of the woods - this thing takes a while - but she's through her "induction therapy" sucessfully. xo PH

Damn I Miss My Wife

2007-07-23T21:13:00.000-07:00

...and I see her every day! It was four weeks ago today that she checked in at Cedars. Ten pints of chemo. 30+ blood tests. 135 "vitals" - pulse/blood pressure/temperature, 120+ bottles of water, lots of visitors, many many homemade meals... and we're all ready for her to come home now. She's getting close. They are still watching the "Polys" (Neutrophils, a type of White Blood Cell) the White Blood Count (WBC), platelets etc. and all the counts are getting close. Platelets are fine, Hemoglobin is fine...Three days ago her WBC was 1.7, today it's 3.1. Normal range is 4.0 - 10. It's higher now than the two weeks before she went in. So it's getting close. I need to know the exact date so I can rent a U-Haul trailer to bring all the stuff home. Actually we've been bringing things home, clothes, books, etc., already. The photo collection on her walls has continued to grow and it's pretty large now. I need to take another picture of it.
To one side of our bed at home are three doors that look out into the yard and trees and plants. I'm looking forward to her being able to see that. The weather has been nice (including an LA oddity last night - July rain!) and everything is lit by the sun in the morning.
She's still hanging on to hair, but it's thin on the sides and in the back, we're not sure what's going to happen there. As for the near future, medically speaking, we don't know all the details. More info coming.

She'll need to have another bone marrow biopsy to see if she can be declared officially "in remission", and at that point we will meet with Dr. Forman at City of Hope to work on the next steps. But for now, getting home and enjoying the day will be quite a prize. She has not left her hospital room for 31 days. It's an incubator and the chick is ready to hatch. xo ph

From Mother's Day 2007

2007-07-20T11:31:00.000-07:00

Rosina has been getting unhooked from her IV now and then and going on some outings. Yesterday she crossed the room and sat by the window! She read a trashy magazine! She stayed up until 11 last night and watched a movie! It's nice because she said these were simple things that she just didn't feel like doing before.

I've been meaning to post this picture from Mother's Day 2007. There's a big blow up of it directly across from Rosina's bed. It's been important to her, so I wanted to share it.
xo ph

Bone Marrow Donation in Brasil

2007-07-19T09:55:00.000-07:00

Currently there is a search underway for a bone marrow donor for Rosina. The first place that they look is the National Marrow Donor Program (NMDP), which includes the Untied States and many European countries. The initial quick search of the NMDP did not turn up a donor. There are other ways that they can look through this registry, but the search is becoming more world wide. This of course will include Brasil. Currently in Brasil , there is a major push to increase the registry. IF YOU ARE IN BRASIL, the organization is called REDOME (Registro Brasileiro de Doadores de Medula Óssea) and is part of INCA, the natinal cancer institute. I am putting a link on the right that will direct you to their web site. They have information (in portuguese) about donor locations and so on all over Brasil.
Being a match is related to tissue type which is strongly related to your ethnicity. Rosina's parents were both Brazilian. Her mother's parents were Italian, and her father's side was Portuguese and Austrian. It's a pretty Brazilian mix. if you are so inclined, we encourage you to get on the registry. You could possibly help Rosina and if not her, someone else in a similar situation.
**update/correction from Rosina:
" Just a little detail: My father side, as far as I know, is all portuguese (maybe some spanish trace way back when in Europe). My mother side is a mix from italians from Naples (the Savastanos) and from Torin (the Minaris) that have some Austrian blood (I think my great grandfather was Austrian). It's not a big deal, but that's how the "muttnicity" goes."

If you are Brazilian and in the United States, the NMDP is still better for Rosina (see post below). Of course, you can do both, but you have to be in Brasil to register with REDOME.

Rosina's white blood cell count has been very steady, and low - 0.6, 0.7, 0.7, 0.7 (normal is 4-10) but today it took an upswing to 1.1. The doctor says this is typical, it hangs out for a while and then starts to rise. So that's good news. She will be able to go home when it gets better. Our friend Rogerio emailed this drawing after visting last night. It includes him, Andrea, John & Bella (newly relocated from Paris), me, and Rosina of course. Obrigado, Roge!

I'm not at home, so I have to wait to add pictures to the post!

Thank you everyone for all the good spirits, pictures, food and everything!
xo ph

Bone Marrow Registry

2007-07-16T13:04:00.000-07:00

Rosina is generally feeling well. Her platelets are up and down, she had a transfusion today and will probably have a whole blood transfusion tomorrow. Her hair has not left her head, although she can pull some out. The doctor said she'd never seen anyone hold on to their hair so long. Rosina says that it's still in shock from being cut so short. She continues to survive on food donations from friends and is liking it. Thanks, all, for the food.

Here's my Public Service Announcement #1 for the day.
For Bone Marrow Transplants, the City of Hope uses the National Marrow Donor Program (NMDP). This is a registry of around 10 million people who are listed as potential donors for Bone Marrow Transplants. I mentioned the process a couple of times before, and you can go to their website to get more specifics about the actual process. Here I just want to tell you how you can get on the registry if you so desire. Unlike blood donations, there are no direct donations for specific patients (unless you are a full sibling or identical twin). What you are doing is throwing your name in the hat and supporting the whole program - and, it's possible that you could literally save someone's life. Although, if contacted, you are not required to donate.

Once you fill out the online form, they will send you a kit. It's really simple. It is four cotton swabs. You wipe them on the inside of your cheek, put them in the supplied envelope and send them back. That's it. There is a processing fee for signing up - $52.
If you want to do it, here's the site www.marrow.org Click on "Join Now". The link is posted on the right side of the blog.
Also, you can go to the City of Hope Donor center which is in Duarte, east of Pasadena, and if you give blood or platelets as well, they waive the fee. I'd be happy to pay for anyone.

Here's Public Service Announcement #2
I have to say that we don't belong to any clubs or engage in many community type events, but it's our turn now - Here's an early reminder that September 16 is the Light the Night walk which is a fundraiser for Leukemia and other blood related cancers. It's a walk on the UCLA campus (actually they are all over the country). Jake and perhaps Nina will be team captains. We'll contact you at some point to help out and sign up!

Other very important news - Brasil beat Argentina 3-0 in the finals of the Copa America. Vai Brasil!

It's a Girl

2007-07-14T01:43:00.000-07:00

Friday, a friend called Rosina from Northern California and said "I had a dream about you. You were having a baby. It was a girl!" Rosina replied "It was me!"

What a capacity we have for shifting the context of how we think about things. When you first hear about a big illness, you are shocked and sad - it compares so poorly to your regular life! And then, for a period of time (hopefully short), it becomes your regular life. You know the feeling of getting a hotel room that you didn't like, and a day later, it's absolutely fine? Like that, except ten thousand times more unpleasant. How do we do that, and isn't it great? Not Leukemia, not illness, but adaptation. Your goods and bads, highs and lows, losses and victories are assessed in a new framework, and it helps you make things better. It helps you cope. But here it doesn't feel like coping actually, "coping" still feels like reacting to a dent in your old life. It feels like new life. Along with the difficulties of this situation (and with perhaps many more to come), there have been many many meaningful moments, most of which are related to one thing - honesty! Sometimes you have to submerge to scrape the barnacles off the hull whether you want to or not.

Rosina is doing well, better every day, having visitors and watching her Neutrophils go up. This is the main defender against infection. They still have a long way to go, but the direction is up. We're expecting her hair to fall out anytime now. I think she's ready. Chemo effects cells which divide quickly, as the hair follicle cells do. So the hair goes (temporarily), and she will "own" bald! A couple of days ago, Rosina was singing an old carnival song that loosely tranlated was "We are the bald men, and when things get tough, we're the ones the women come to!" xo ph

Good News - First Big Hurdle Jumped

2007-07-11T15:25:00.000-07:00

Yesterday was full of trepidation, medical drama, helping hands, and a fair amount of anxious tears. Rosina had a bone marrow biopsy to check on the progress of the chemotherapy and the results today are that no leukemia cells, or "blasts" were seen. She is "clear". This eyeballing is followed up by a more rigorous test, but it's a very good sign. It means that the first round has been sucessful. In taking her white blood count down to nothing, she has gotten rid of the bad cells. Now it's another two weeks of recovery in the hospital to get the white blood cell count back up.
Generally in this situation you just go one day at a time, but sometimes the big picture comes crashing in, and it has a tendency to be the negative big picture, and Rosina was feeling it yesterday morning. Not so much the impending procedure of having a bone marrow biopsy, which she described as like having dental work done - to your back - but that the chemo was not doing what it was supposed to. It did. Nasty stuff, but it did. Huge hollers to Amy, Stephanie, and LeVar for being there and providing support. If you need freedom from being enslaved to something, it can't hurt to have Kunta Kinte around.

Unfortunately, this does not mean that you do not have Leukemia and this is not considered "remission". Her blood count has to return to normal (the aforementioned two weeks), and then she has another bone marrow biopsy (that will be number four), and if that is clear, she would be considered in remission. But still, this is not the end of Leukemia. It is tenacious and literally lives inside your bones. After achieving remission, she'll come home for a bit and we'll go out to City of Hope to see Dr. Forman and map out the next steps, which include a bone marrow transplant. Apparently, you can't just change the oil, you have to replace the engine. In any case, we'll take today's victory and the forward motion.
A small food update, Many people have brought food by and Rosina has discovered exactly how to order from the hospital menu - soup and a baked potato. Cedars, by the way, does have a fancier in-house menu. It costs $140 a day. The real selling point turns out to be the regular menu.
Again, thanks so much to everyone contacting us. Rosina is reading the comments here on the blog and the emails she's receiving.
Lastly, here's a view from Rosina's bed; what she's been looking at for the last two weeks. I believe if you click on it, you get a bigger version. xo ph

PS Someday we'll translate all those comments posted in Portuguese for the gringos!

The Long Weekend

2007-07-08T19:07:00.000-07:00

It turned out pretty well that I took Thursday and Friday off as these were days for sitting in the hospital. As predicted, there were some tough moments, but also some bright spots. The single hardest thing for Rosina has been a rash on her skin that is just painful, swelling her wrists and ankles and making it extremely difficult to get out of the bed. I mean painful just to get her feet on the floor, and a few times having to give up on that. She has been very strong during all this. I don't mean "I'll show 'em", she's just had a composed, practical strength. The kind of strength that lets you pick up a car when your kid's trapped under it. Although sometimes, you just gotta ask for the meds, go to sleep and ride it out. Today, Sunday, she was doing much better, but it's not all gone.

Here's her IV rack with Maxipime, Vanconycin, 0.9 Sodium Chloride Solution, (that mixes with a unit of) Whole Blood, and then more hydration with the bigger bag of Sodium Chloride Solution. When the blood was finished, they hooked up a unit of Platelets. Your blood is made up of red cells, white cells and platelets (a little 9th grade bio). The red cells carry oxygen, and not enough makes you anemic (measured by your hemoglobin count); white cells are your immune system, fighting bacteria etc.; and platelets clot your blood so it doesn't spill out all over the place. If you donate platelets they draw your blood, spin out the platelets in a centrifuge and then return the blood to your body. A bag of just platelets is yellow. Like a frozen magarita. She can feel the difference when she has a transfusion. She was hoping one of the first ones was from our friend Sandra, a Brazilian "Bahiana" (from Bahia) which promises heat and some crazy energy. Especially during Canival. They don't list the donor's name on the blood, but I can tell you that today's blood came from number W0505 07 000812. When you give blood, they give you a number, so if you happen to know that this is yours, contact us for your free prize!

Rosina wasn't eating much for the last few days, mainly just chicken soup, but for some reason she latched onto the idea of a roasted chicken, and today, our friend Amy brought one in. A whole chicken. Rosina just started eating it right there out of the Pyrex dish. That's it sitting in front of her in the picture to the left. That was good. We followed that up with a successful video chat with our friend Zélia in Rio de Janeiro which was a big success and a great boost. It's pretty amazing you can do that - and for free.
Our nephew Dan has been here for a few days and that's been great. His main job has been to keep Willie entertained, or maybe I should say con-tained. They went with Jake to ride roller coasters at Magic Mountain. Nina leaves tomorrow for three weeks at camp, and then after that, she's off to Ireland, Spain and Italy with her friends. She'll be home for two days in the middle. I don't think I ever went on a trip like that until I had a job. And then I couldn't go because I had a job.
From this point, it's about continuing the recuperation. Tuesday, she'll have another bone marrow biopsy to see how it's going with the "blast" cells in the bone marrow. You want to see as little as possible, preferably none.
I want everyone to know that my previous comment about soft sheets got more of a response than any other thing mentioned here, so I want follow up and let you know that the sheet problem has been solved. Thank you all for the kind words, emails, posts, calls, pictures, food, advice on sheets, driving and babysitting. xo ph
Joshua Tree xmas 2006

Phone

2007-07-06T12:46:00.000-07:00

Just a quick note - if you are calling Rosina, her cell phone is better than the room phone. She can mute it if she wants and it has voice mail. Thanks. PH

Tough Day (not for Will)

2007-07-06T00:33:00.000-07:00

I'd call this a "something to look forward to" picture. Will and I were taking a dip in the pool a couple days ago and I looked at this scene: Willie swimming, the sun coming through the oak trees, and the orange hammock that Rosina bought in Brasil last summer in Paraty (pronounced para-chee). I had to get in the pool with the camera to get the exact right angle, then printed a big version. It's hanging in Rosina's hospital room so she can think about being there. She will be. A nice thing about short hair, a girl doesn't have to worry about jumping in the pool.
Things changed quite a bit from yesterday. She had to do a lot of test type things - draw blood several times, have a chest x-ray - which they do in your room, and get an ultrasound to make sure the line in her arm is okay. It is. But she has a fever and is not feeling well in general. Getting out of bed and walking is a bit tough. She's itchy. She asked me to find the softest sheets I could as the hospital ones have become irritating. But these things are to be expected (we're told) and it is close to the tenth day. Tomorrow could be worse, and even the next day, but then she should start to slowly lift back up. She's hanging tough. Early next week she'll need another bone marrow biopsy when they'll take out a little piece of bone (where cells are produced) to really look at the cells that are there - or not there. We're trying to get rid of the bad cells.
She's gotten at least one more transfusion. Thanks to you all who've been able to give blood, and also thanks to those of you who'd like to but can't for one reason or another. They are (thankfully) picky. I saw on a chart that a leukemia patient will typically needs 6-8 units (pints) of blood during their "induction" therapy (the initial chemo).
My nephew Dan was stuck in Las Vegas in 100 degree heat and decided to drive to Los Angeles and help out for the weekend. Nice. I told Will that he was coming and Will asked me if he was going to sleep in his car. We're actually letting him sleep inside. Thanks for all your thoughts and every possible denominational prayer that has been sent Rosina's way.

Paraty, August 2006

The 4th

2007-07-04T15:34:00.000-07:00

The first round of Chemotherapy ended its dosage yesterday with the 7th bag of Cytarabine. The effects are coming in. Rosina's white blood count was down to 0.8 yesterday and 0.6 today (again, 4-10 is normal) and now her hemoglobin count has dropped to the point of requiring a transfusion. She got her first unit of blood today. It's sitting up there on the IV rack. I don't know if it was mine. I hope so. She had an odd reaction to a medication the other day and her forehead became swollen. I was at work and our friend Prudence IM'd me and said Rosina's brain is swelling! What? Seriously? Okay, no, her forehead. Rosina said she looked like Herman Munster minus the bolts in the neck. I don't think she could ever look quite like that; although, Herman is smiling. It was pretty unnoticeable by the time I got there.

I had the pleasure to wake up this morning and video iChat with Rosina - it's great. Below is a "screen shot" of my computer. You can walk all around the house with it to show important things like drooling dogs, blooming plants, and that piece of carpet that just won't stay flat.
While we were on, the doctor even came in and I saw her doctor visit while Will and I were sitting the kitchen at home. Part of it anyway. We logged out.

While we're on the topic of tech, Rosina has her hands on her iPhone. Yes, it's amazing. Cedars Sinai - world class doctors, world class class care, walking distance to an Apple Store.

Rosina will probably have to cut back on visitors for bit, so the best thing is to call her cell and at least leave a message if you want to come by. Thanks, everyone, for your emails, calls, notes, food, and kind thoughts. xo PH
PS - I have some Bone Marrow Transplant donor info coming up.

Week One Done

2007-07-01T16:35:00.000-07:00

Rosina can hear Dr. Dunhill coming because of her nice shoes. No white reeboks for her. The first few times we met her she was wearing a black dress which we decided, while flattering for her, is not what you want to see your Oncologist wearing. Rosina's been working on it and it's their running joke. She's very nice. I spoke to her on Friday and in general she said Rosina is doing well. She hasn't had any strong nausea or other side effects. One day she actually felt a little worse from the anti-nausea meds themselves. Her White Blood Count had been pretty steady at 2.0, but today (Sunday) it came in at 1.6. Normal range is 4 - 10. So 1.6 is obviously low. The nurse put a "Neutropenic" sign on the outside of the door - restricted food, healthy vistors only etc. With many kinds of cancer, when you are getting chemo and your white blood count gets really low, they may hold off a bit on the treatment to let it go back up, but not with this. The point of this treatment is to take your white blood count to zero. This is why you have to stay in the hospital the whole time. Chemotherapy is both miraculous and barbaric. It works, but it's tough. It's like a controlled burn.

This is a little wider on Rosina's room. Will and Nina are on the floor under the window watching a movie. The IV rack next to Rosina holds two things - an IV for hydration, and the one on the right is her fifth bag of Cytarabine, the second chemo drug. Each one drips for 24 hours; she has two to go. I read that sometimes they recommend that people who are getting chemo flush the toilet twice, because porcelain is porous and your urine is considered hazardous waste! The other counts being watched are Hemoglobins and Platelets. They are both dropping and that means transfusions - both whole blood and platelets. When your platelets drop you need to start being careful about any kind of bleeding, so no shaving, and even brushing your teeth becomes something to be careful about. Several people have come in to give blood - we thank you! If you would like to give blood in a "directed donation" for Rosina, email her or me and we can get your name on the list. By the way, they always need all types of blood if you're so inclined - free cookies.

The food continues to be stellar, and by "stellar", I mean a black hole. That's a kind of star. The kind that sucks. Several people have brought some food to the house or to the hospital and it is greatly appreciated. It needs to be home made, though, none of that stinky restaurant food. They gave Rosina a feedback questionairre about the food, and as she checked the "fair" and "poor" boxes, she said "Hey, I've got Leukemia, they can take it." I saw two hospital nutritionists in the elevator. They didn't look healthy.

Jake came in on Friday. He spent the week at Computer Camp, or "nerd camp" as he calls it, where you might think they debate the merits of dynamic IPs with PPPoE vs staic IPs with DHCP, but really, they do the same stuff he does at home all the time except that he wears an ID badge and has to walk across the UCLA campus to eat breakfast. He's been to this camp before, and once when we picked him up, the counselor said, "Jake's great, he showed me a lot of cool stuff" Okay, so why don't you give me $900? We did finally get the internet working in her room (because it's PPoE with a dynamic IP of course) and Rosina has access to email and is able to read the blog and the comments. Please leave them (or email her) they are always a bright spot!

Her mood is generally good, but it's a strain, and we can tell that the tough stuff is coming. This morning she had some pains and almost fainted. Her head is itchy. These things are creeping in. She is often bright and chipper and then the other reality intrudes. It's like that feeling of swimming in a lake and suddenly you're in a cold spot. Positive thoughts, love, friendship...timeless lasting things are of tremendous value. We've put up lots of photos on the wall and if you want to email me one, I can include it. Glad to hear from so many of you that the blog is helpful and meaningful. Thanks. Leave hellos for z! xo ph

Blood and Platelets

2007-06-28T09:03:00.000-07:00

Quick note - If you want to be a blood donor, Rosina will need both BLOOD (A+) and PLATELETS. It a seperate thing, but a similar process. The doctor recommends that if you are donating, ask which she has less of there in the bank and give that. She needs both. Drawing platelets takes longer and needs to be scheduled - it's about a two and half hour visit.

Again, your name has to be in the blood bank to make a direct donation, so we'd need to know ahead of time. You can call the Blood Donor Facility at (310) 423-5346 to schedule an appointment. Thanks, ph

Never Not Smiling

2007-06-28T01:17:00.000-07:00

Have you ever seen a picture of Rosina not smiling? I don't think I have, and I've taken most of them. Nina and I went over this evening to hang out. Rosina had her second blast of Idarubicin, which sounds to me like the name of a woman who nobody likes, but gave a lot of money to the hospital - Ida Rubicin. So far the side effects are slight, but they will creep up. We watched Brasil lose to Mexico in soccer. The side effects of that were felt immediately.

It looks like Rosina will have internet in her room by the weekend which means email etc. - if she feels like it. I'm very excited about being able to video iChat with her - that's some powerful (emotional) technology. xo ph

International Shout Out

2007-06-28T00:45:00.000-07:00

As a friend's mother once said, "It's not a small world, it's a big club." Welcome to Club Rosina. Take your shoes off at the door and have your picture taken with a smiley lady. This blog, and the internet in general, has let us reach many people far from us, and here's a hello and thank you to our dear friends and family in England, France, Holland, Spain, Italy, and of course, Brasil! We're looking forward to hearing from the rest of the world. xo ph

ADDENDUM
Just a quick note for Angelenos: Our good friend from Brasil, Zélia Duncan, is singing in the band Os Mutantes. They are currently playing a bunch of shows in Brasil, America, and Europe, and will be at the El Rey theatre on Friday July 13th. This is a reunion of a psychedelic 60's band that played wildly creative, inventive, musical, rock and roll - and they still do! Their show is great! Sort of Sgt. Pepper meets Frank Zappa - in Brasil. Rosina can't make it and if you want to be there in her stead buy tickets at Ticketmaster. The El Rey is a ballroom with an open floor and tables on the side, general admissison. xo ph

Induction

2007-06-26T22:26:00.000-07:00

Chemo began today at about 6pm. First is Idarubicin, seen here in this tube, which you get in an IV and it takes about an hour to go in. (Despite the fact that I photographed a tube, I promise I won't post lots of unappealing pictures of medical equipment. Although, Will shot an exciting one minute movie of the toilet flushing.) Two nurses must bring the bag to the room and double check the patient's name and id number before they hook it up to the IV pump. It's like those dudes in missle silos who have to synchronize turning their keys - but in a bag. You don't feel anything in particular. You get that once per day for three days. She also started Cytarabine which is given in a 24hr drip for seven days. The other three weeks (at least) in the hospital are really about recovering from the first week! Day ten is the lowest spot; your white blood count is very low, you feel bad, and visitors are very restricted. Day 18, you are much better. Drugs are available for just about any side effect. Rosina is smiling and is strong.

I got more info on giving blood specifically for her. There will be a "blood order" in the donation facility at Cedars that needsto have your name on it. So, if inclined, let us know and we'll get your name on that list. then you call them for an appointment.
Also, people have asked how to leave a comment on the blog. Click on "comments" at the bottom of a post and a new window will open. You don't need to register with blogspot, you can just choose "anonymous", write in the box, and add your name at the bottom of your comment. Then click on "publilsh"

A freezing New Year's Day swim, 2006.

Thanks, everybody, xo ph

Day One

2007-06-25T21:50:00.000-07:00

I think I have a little idea of what it's like to send someone off to war. There they are standing next to you reaching for something, sitting near you at a dinner table, feeding the dog, making a joke, but you know...you know they are headed out there where it's dangerous. Where your intentions are good but the risks are great. They have to walk out into the fire, turn around, and hustle back without getting hit. Actually, they have to go out there, get wounded, and hustle back. Soldiers must justify their task in some way in order to forge ahead into confusing uncertainty, and so my sweet wife must do the same; to see the people she loves and love her, to let loose the things that do not, to focus on what's true and good. We left Rosina in the hospital tonight. She'll be there for about a month.

It looks boring.

We took pillows, a feather bed, an ipod and headphones, 10 books, knitting, art supplies, cell phone, photographs, a tiny buddah, notebooks, pamphlets, brochures, a bunch of clothes, and some slippers.

I'm pretty sure she'll just be watching cooking shows.

Her room, on the fourth floor, is in a "positive pressure" area. There is a kind of anteroom before four other rooms, and the air is constantly filtered. It is really for people who have had bone marrow transplants and have no immune system. Although the extra door makes the room a little less friendly, I do like the term "positive pressure", and suggest that it be applied liberally. Will, Nina, Sonia, and I (Jake is at camp) went and hung out for several hours. She got an IV line for some hydrating, and some rice and chicken that was apparently all about DE-hydrating. We were able to use a piece of the chicken to fix a wobbly table leg. The Sara Lee individually wrapped piece of chocolate cake had icing on it that could patch an ancient fishing boat. I still have some stuck to the roof of my mouth. THEN they give you chemo. Nice. Of course, all the people doing these things were perfectly friendly and helpful, and Rosina was so warm with them right away. Appreciative. I'm pretty sure she's going to win camper of the session. Honestly, tears and all, she's pretty amazing. She has an incredible light in her eyes and it's not about lights, or even eyes.

Oh, and on the food, for now, she can eat outside food. Has to be cooked and they recommend against restuarant food. Recommend. By the way, the hospital has a Starbucks in it, but no wireless interent. What's up with that? How's anybody suppose to write a screenplay in there? And to make things worse, Rosina's in no shape to wait in line for an iPhone. I asked her.

Visiting works kinda like this. Visiting hours are 9am-9pm and I need to manage it a bit depending on how she feels and how it's going. The best thing for now would be to email me if you'd like to come. Please, nobody feel obligated to visit her, it's nice, but not necessary. Part of this ordeal is submerging into it, coming up on the other side. Just lemme know if you want to, because you are welcome. A parking note: you can enter the Beverly Center off San Vicente and park there for a buck if so inclined. Also note: she cannot have flowers in her room.

Blood. Rosina will need several transfusions. Her blood type is A+. I know that some of you are also A+, or the universal donor type, O-, and you can donate blood that is earmarked for Rosina. Her room is 4SW 4925. The phone number for the blood donor office at Cedars is (310) 423-2416. They are open to 3pm on Monday, Friday and Saturday, and until 7:15pm on Tuesday, Wednesday, and Thursday. (also see link above) They validate parking and I think they give you a free movie ticket. It is located in the South Tower, the same building where Rosina is, on the ground floor. They said she'll need the transfusions in close to a week and since the process of cleaning, bagging etc takes a few days, now isn't a bad time.

She starts her chemo proper tomorrow and I will be there in the afternoon. Thank you everybody for reaching out so much, it continues to be very meaningful. xo ph

Launch

2007-06-24T19:36:00.000-07:00

It's Sunday night, June 24th , and tomorrow morning we'll call and see what time to show up at the hospital. In the last couple of days the inevitibility of what's coming has crept up; like someone throwing a blanket over your head to take you to places unknown. We keep repeating some heartfelt and wise words that our friend Alfre's dad said at 65 - "I'm gonna kick cancer's ass!" He did, too.

Rosina isn't sure what to pack. Luckily, the hospital is only fifteen minutes away. I feel for those people who have to make a four hour trek to the city to be treated or take care of someone. We are lucky not just to be close to great hospitals, but to doctors and care (and friends) that are as good as anyone could hope for.

The picture above is from last Thursday, June 21st. That was Rosina's father's birthday. He lived a block from Copacabana beach in Rio de Janeiro and used to walk on the beach every day, so she makes an effort to take a walk on a beach every June 21st. This was in Santa Monica with our friend Susan.

My parents made it out from Philadelphia this weekend and we had a good visit. They are on their way back early Monday. The timing was good as the hospital admission was delayed. Several people stopped by with spirited well wishes, food, music, books, bears, noteooks, gelato...and kind words. I sort of hesitate to mention everyone by name as there are so many thanks, but THANKS!

We continue to learn and get more information about all this stuff going on and I will deliver it as I know it. I should have more info on blood donations for transfusions, bone marrow transplant donor registry, and visiting hours/policies/practicalities tomorrow or a little later. Rosina is feeling strong, and naturally a bit scared, wary, and sad about the whole affair, but not any real self-pity. No cries of "why me?". To that we kind of have to say "why anybody?" The goal is to look ahead, take one step at a a time, and look forward to her standing on the beach with that same smile next June 21st. And kick cancer's ass. Peace! xo ph

Snow Day - extended

2007-06-18T22:27:00.000-07:00

Rosina is not going in on Tuesday the 19, but on MONDAY, June 25th. We were pushing to Friday, but that's not a good day to go in because of hospital logistics, so it was decided that Monday would be better. Dr. Dunhill said that her blood counts are fairly stable so she doesn't have to rush in.
We did however get some results from last week's bone marrow biopsy, and the percentage of "blasts" has gone up. Blasts or Myeloblasts are white blood cells and in this case, they are immature white blood cells that are not progressing to full maturity. They do not take on the protective properties of healthy blood cells, mainly, becoming your immune system, and they also crowd out the healthy mature white blood cells. This is the process that you treat with chemotherapy.

We heard this right about the moment we started quietly thinking - is this really happening? Yes, it is. Considering all, Rosina is in good spirits, has had many meaningful conversations, and she looks great with her "I own a gallery in Soho" hair. - ph

The Secret Simplified

2007-06-18T00:00:00.000-07:00

A friend recommended "The Secret" film to us which we watched today. It's lots of people talking about positive thinking and what that does for you, but here's my shorthand for the whole thing:

Don't call it an ANTI-WAR PROTEST
call it a PEACE RALLY

That's what we're doing.
xo
ph

hair we go

2007-06-15T23:01:00.000-07:00

We had an impromptu pot luck here at the house friday night with some friends that included a hair cut. I think I'm up for the same cut, I only wish it looked as good on me. Z - you're beautiful. Thanks to José for coming over to the house and helping out.

City of Hope, Disneyland, and things inbetween

2007-06-14T19:14:00.000-07:00

We went to meet with Dr. Forman today at City of Hope in Duarte. City of Hope is a hospital/care complex with several buildings and nice landscaping. It's 27.1 miles from our house on the far side of Pasadena, which means it could take half an hour to get there, or with bad traffic, two days. We liked the Doctor a lot and he listened to all our tales of woe and I'm not even talking about the medical stuff. He has been in contact with our other doctor, Julie Dunhill, and had a look at all the reports etc. His nurse is Brazilian so there was Portuguese health talk. His primaray focus is doing the Bone Marrow Transplant (BMT) and the factors involved in that. We still are waiting on some reports that may affect the actual drugs used for the chemotherapy which would begin Wednesday the 20th. He also noticed that the bone marrow biopsy was done with a smallish section of marrow, so he did another one today to be sure about "blast" counts and "auer rods" and other diagnostic stuff that I unfortunately know the meaning of. He was, in general, informative and positive, and while no one diminishes the seriousness of the condition, he said it was good that this was caught early, quite by happenstance, and that Rosina is not showing any symptoms like weakness and bruises and other leukemia stuff. This makes her stronger for the long haul.

A little more on Bone Marrow Transplants. Many people have asked about what donating is/means/entails. If you need a transplant, they do a blood test and look at 10 indicators specific to you. Then they look at their (worldwide) registry of 10 million donors - yes, 10 million - and look for a match. There could possibly be 35. Maybe 1000. (about 70% of patients find matches this way - which is better than eharmony online dating). Then they begin to contact them in small numbers and see if they're interested. If so, they draw some blood to check again if they truly are a match, and if that's good, do a short physical to check them out - health history etc., and then, when the patient is ready (timing counts) they get the marrow for the transplant and get it to the patient.

How do they get the marrow you ask? No saws, drills, or random-orbit spindle sanders are involved. There are two methods and both are used equally. One involves the donor getting a shot that increases stem cell production so there is more present in the blood, then they draw some blood a couple of days later. The second is a bone marrow aspiration which is a five minute deal with a needle into your hip and they pull some fluid. In terms of having yourself tested, basically what you're doing is putting your name on the registry after they draw blood. If it's not for Rosina it could be for someone else, but I didn't get the impression that it's at all likely we could match her. Although, for me, if some stranger is willing to give bone marrow stem cells to help my wife, I'm willing to give bone marrow stem cells to some stranger. More than fair. If there is no match, they can use some of the patient's own blood if they're in remission, but it's not the first choice. There are a lot of factors and possible complications that will be determined and dealt with down the line. Again, Dr. Forman was encouraging in that it was early and Rosina was in better shape to go through this.

A couple days ago she went to Disneyland with our kids, Sonia and some friends. Our friend Susan helped us with the last minute hook up to get a guide at the park. It made a big difference, as while they don't let you cut lines with a guide anymore - they cut lines with the guide. Big difference. The wait at the new Nemo submarine attraction was 3 hours! 3 human hours! I can BUILD a submarine in three hours! Luckily they got to do all that without the lines and took advantage of the situation and stayed there until 8pm. As if impending chemo wasn't torturous enough. But they had a great day. The guide, who came in on her day off revealed that her father is suffering from Myelodyplasia. She really felt like she came in for a reason. It was a good trip.

Tomorrow is haircut day! If you're going to lose your hair, it's better not to lose a whole lot of it, so Jose is coming over to the house tomorrow to give Rosina a really short cut. I'm confident she can pull it off. She's done it before! (This is her at three.)

Unfortunately for us, our families live far away. My parents will be here next week and others will come, but I have to say that we feel completely surrounded with love by our many friends here. A lot of support and a lot of help. And for a waspy yankee like me, it's been a great lesson in caring; for the brazilian girl it poses a question: why isn't it always like this?
Thanks, everyone, so much!
xo
ph

Now you know where I live

2007-06-11T21:24:00.000-07:00

My brother Dave was in the Boston suburbs a couple weeks ago, "partially" lost, when he snapped this street sign.

Hospital Date 6/19/07

2007-06-11T19:54:00.000-07:00

Rosina went to see Dr. Dunhill today. Her white blood count (WBC) was a little lower, although about the same, but her Neutrophils were low for the first time. These are a type of white blood cells and they are below a level that it qualifies as Neutropenia. Let's just say that you don't want that. She needs to be very careful about infection and eat cooked or canned food only. Still haven't gotten results on the cytogenics yet, which show chromosomal abnormities which will affect prognosis and the type of transplant down the road.

The plan is for Rosina to be admitted to Cedars-Sinai on Tuesday, June 19. After a day of tests (EKG, another bone marrow biopsy) and getting a PICC line (a fixed IV in your arm), she would start the treament the next day. It's a continuous IV for 7 days as well as a "quick push" for three days in a row - that's chemo. It's rough and makes you feel terrible. She will also need blood transfusions. She is A+, which matches with A+, O+ and others, I believe. If you would like to give blood for Rosina, or anybody else in need for that matter, you can contact the Red Cross. I'll get some more info on that. She has to plan on being in the hospital from 4-6 weeks, maybe less. After that, you have to maintain remission by continuing (chemo)therapy while you wait for a Bone Marrow Match. If you find a match early, you can avoid additional chemo cycles. Doesn't this blow?

She will be able to have visitors at the hospital generally, but they must be 110% healthy. If you are 110% healthy, could you please leave that extra 10% in the room when you leave? They don't use masks for vistors because they've found that it doesn't work/make any difference. Can't have any flowers or plants in the room. Instead of sending any flowers, Rosina would love it if you planted something at your own house and thought about her when you look at it. I'll be looking at Jake, Nina, and Will.

She can have her own pillows - phew.

All the love and care has been wonderful, we've had some amazing days this week. Rosina is all heart and it means a lot to her.

Tomorrow she is going to Disneyland with our kids and some others.
Thanks for the calls, comments, and emails.
love from r&p
xo ph

1st bit of info

2007-06-08T23:33:00.000-07:00

Rosina had a pain in her side and went to get it checked out. They did a blood test, and while the pain seemed to be nothing, her white blood cell count was low enough that the doctor told her to get another one immediately. The result was the same, so she was sent to a Hematologist, Julie Dunhill at Tower Oncology. There, another blood test which led to a bone marrow biopsy and aspiration. Your bone marrow is where your blood cells are produced. The bone marrow test is a ten minute operation where they draw some fluid from inside your bone (like your hip bone) and also pull a piece of bone to look at. This is checked by a couple of pathologists (at Cedars)

We went back in a few days later (June 5th) and got some surprising news. Rosina was diagnosed with Myelodysplasia. There are several types of Myelodisplatic Syndrome, or MDS, but the one that Rosina has, RAEB-1, is one that is on its way to becoming Acute Myelogenus Leukemia, or AML. She doesn't have leukemia yet. There is still one part of the test that hasn't come back, the cytogenics, which give some more specific info about how it's growing and exactly how to treat it. But generally, the treatment starts with about four weeks in the hospital for "induction therapy", which is chemo. You stay in the hospital the whole time as your white blood cells, your immune system, is wiped out. By all accounts, there are good days and bad, but it's tough. This process is to kill the bad stuff. This would happen at Cedars Sinai.

The cure part of it is another step, a bone marrow transplant. This would be done at City of Hope in Duarte. This is a hospital/care facility that only deals with cancer. The Leukemia guy there, Steven Forman, was recommended to us by several people and is really supposed to be the best. We have an appointment with him next week. After that, and once the cytogenics come in, it will be determined when Rosina should enter the hospital. It could be very soon.

A note on bone marrow donors. Matching is very rare. There is a list and we'll be on it. The best match is full siblings. Rosina has three half-siblings which can be considered. The process of donating is a shot, followed two days later by drawing blood; that's it. The transplant to the patient is actually more of a transfusion, but they have to have some serious chemo before it's done.

We have been getting great help from our friends emotionally and also with doctor referrals and feel like we are in good hands on that front. Apparently, Los Angeles is a good place to get sick. Of course, we've always known that, we just didn't want to test it out to this degree. Rosina is in shock, and while she doesn't really have any symptoms, it is a strain. The reaching out from those close to us has been tremendous. We said the other day that it isn't the illness that's making us cry, it's all these people saying that they will do anything for us!

We told Jake and Nina what's coming, Will doesn't know too much, but he will when we know when Rosina's going into the hospital. It's better if it has time to sink in instead of last minute. Logistically, things are okay. Kids are out of school, Sonia's here, and I can ditch work as I need to without much worry.

I will update this with info as we get it, so you all can know what's happening. Rosina is strong, we are all optomistic. It's going to be a bumpy road, but travel it we shall.
-ph

PS - Some of my understanding of the medical things may be off a bit, but the general idea is the same.
PPS - I believe you can leave comments on this blog if you like. You can also email me directly.