the future of junk and a mountain remembrance

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

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

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

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

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

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

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

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

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

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

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

"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

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

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

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

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

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

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

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

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

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

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

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

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

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