Friday, June 29, 2007

Miami

Hi everyone:

We arrived in Miami last night for Luke and Nicole's wedding on Saturday. Things were somewhat chaotic as we tried to balance kids' excited requests with our desire to get settled. Today, we are supposed to join a group for snorkeling, if the weather cooperates. I have a slow Web connection here, so I will sign off for now.

Patty is doing pretty well, although I suspect our schedule may make her weary.

Love,
Brian

Wednesday, June 27, 2007

Just a quick update

Hi everyone:

Patty is still doing pretty well, although the humidity has kept her inside for much of the time. While we went for a short walk yesterday, Patty experienced some swelling in her hands and had some difficulty breathing; these are just signs that she needs to exercise some caution.

For much of the day today, we have been preparing for the trip for Luke and Nicole's wedding. The kids are excited; we're of course stressed by the details, but will certainly have a good time once we're there. Hopefully, Patty won't have any health challenges while we're away from home, and we won't receive a call about a heart while we're out of range.

Other than that, there's really very little to report.

Love,
Brian

P.S. Go Sox

Monday, June 25, 2007

Parties, Patty posting and passports

Hi everyone:

Yesterday, we attended our nephew Sam's first birthday party. There was quite a crowd in attendance, on what evolved from an overcast morning into a pretty nice, sunny afternoon.

Sam seemed to enjoy my holding him from time to time; I suspect this is is at least partially because my stomach provides a comfortable seat. Starting next week, I'm going to work harder on getting rid of that "seat."

Patty stopped into the office at school today to facilitate a mailing to some of her advanced placement students. I can tell she is enthusiastic about getting back to work, and that this eagerness is increasing week by week.

I'm happy for her, but still a little worried about her stamina. She seems almost as strong as she was early last year, and I really hope she can keep this streak going for a very long time. She has promised me that she will pace herself at work, and will not hesitate to ask for help. Kelly and PJ will both be in the school next year, so Patty should be able to fall back on them as well.

Great news -- Colin called this morning to confirm that both he and Devin just received their passports, so they'll be able to visit this summer. Tammy in the office of Tom Cross has now earned hero status in our home; she pushed and pushed for answers until they finally started to come.

Patty and I are both relieved and excited about the passports -- this will be the longest stretch ever that we've gone without seeing the boys. Kelly asks almost daily about when the boys are coming down; I think she misses them nearly as much as I do. I think I've mentioned this before, but things just seem more "normal" when all seven of us are together, even if they are admittedly more chaotic.

Joe seems to be making a steady recovery after his surgery, although not without some pain; please keep him in your best thoughts.

More soon...

Love,
Brian

Sunday, June 24, 2007

One year and counting...

Hi everyone:

Before I discuss the significance of the title for today's entry, Patty and I wanted to share our best wishes for a speedy recovery for Joe, Patty's brother, who underwent an appendectomy last night. I'm pretty sure an entire season of ER could be crafted around the medical travails of the O'Mara clan.

One year ago today, while in the hospital, Patty was added to the UNOS heart transplant list. It seems like so much--both bad and good--has happened since then. It also seems like the wait may continue for a while.

If there's bad news in this, it's that Patty doesn't seem to be any more viable a candidate today than she was at the time she was listed. When Patty's panel reactive antibodies (PRA) were first measured, the results were 65% and 100%. At last measure, they were at 59% and 100%, even after the many interventions that have been undertaken to bring these numbers down. I'm pretty sure the blood of the monster in the film Alien (you know, that burned through flesh and metal?) was borrowed from Patty; she's an antibody machine.

Do you suppose doctors will be able to solve the PRA riddle? Do you think another good heart will come along, in spite of the odds? How will Patty handle the drug regimen after a transplant, when she seems so prone to negative side effects? Are the kids going to continue to keep their chins up? These questions, and several others, remain on our minds. We've long ago resigned ourselves to the likelihood we will always have questions; it just may be that the questions will change from time to time. C'est la vie...

The good news is that Patty seems to have managed surprisingly well for someone whose heart was so severely damaged--as a result, the doctors aren't pushing panic buttons just yet. As long as Patty doesn't have another sudden downturn in her health like she did early last year, and as long as she ultimately does receive a donor heart, this wait may ultimately seem like a blessing, because life after transplant seems like a big scary unknown. Of course, it's easy to adopt the "life is good" mantra right now, because Patty isn't being subjected to chemo at the moment; we'll see if my commentary betrays more anxiety when the next wave of interventions comes along.

Today, we are going to the home of our nephew Sam, who is celebrating his first birthday (Sam is Peter and Rachel's second son). Everyone is waiting on me to wrap this up so we can get going, so...bye.

Love,
Brian

Friday, June 22, 2007

Not much going on

Hi everyone:

Patty continues to fare pretty well. We have been hosting Cindy and her kids for last night and tonight. We went to see the film 1408 today -- I think I was the only one who didn't care for the flick. Connor is already hoping for a sequel. I'll catch up with everyone tomorrow. There hasn't been much to report. More soon...

Love,
Brian

Tuesday, June 19, 2007

Not even enough substance for a title

Hi everyone:

Patty had a pretty good day. She had a late start (11am), but is still going pretty strong at 11:30pm, and this without a nap.

Kelly's blog entry was nice, don't you think?

We had dinner at our home with Patty's colleague Heather (another art teacher), her husband Ryan (yet another art teacher) and their two young children (art teachers to be?) We also watched several innings of the Sox game...but enough about that.

The one-year anniversary of Patty being listed for a transplant is fast approaching, and I feel like we're collecting questions without getting much closer to answers. I have written and rewritten this paragraph several times, in the hopes I might add some brilliant observation. I gave up -- I just want Patty to get her new heart.

More tomorrow...

Love,
Brian

P.S. Patty just chided me for writing about her late start but not noting how productive she was today -- she went for a walk, did all the laundry, did some cleaning, helped cook dinner and was an enthusiastic host. Boy, was SHE busy!!!

Kelly speaks

Hello:

As you all know, my Dad writes almost all of the blog entries; today, I thought it would be appropriate for me to write one, since I haven’t written one in about eight months. This year I will be a high schooler, and I’m extremely excited that my Mom will be back teaching at the same high school that I will be attending (Oswego East), along with my older brother P.J.

My Mom has been doing well for the past few weeks, without much nausea, serious trouble breathing, or any other “heart attack symptoms.” This is a very good, yet rare, situation and I think I’ve been trying to take full advantage of these days.

We have been doing a lot of things this summer – for example, we saw “The Color Purple” a couple of weeks ago, and Mom saw Stevie Nicks. On the days that we get to do something special like that with my Mom, I forget she even had a heart attack and feel like there’s no possible way anyone could ever separate us. Sometimes, though, I feel overwhelmed by the preparation of my Mom while she waits for a new heart, and I pray at night that it will happen soon. On other days, I just feel really sad that all of this has to happen to her; why couldn’t it be someone else?

It’s not all sad, though. If Mom never had a heart attack, and never needed a transplant, how else would the family get such great gifts like tickets to “Riverdance,” tickets to all different kinds of concerts and sometimes even being able to meet the bands? I think it pretty much all evens out.

This has been more my diary than a blog entry, so sorry to anyone reading this and thanks for listening.

Love,
Kelly

Monday, June 18, 2007

A bit of a rough start

Hi everyone:

Patty is battling both a headache and an upset stomach this morning, and has had moments of dizziness upon standing over the past couple of days. We're presuming these symptoms are more about fatigue than anything else. Thankfully, the episodes of memory loss seem to have been fleeting; since I wrote about them, they don't seem to have happened again.

Yesterday for Patty was split between watching three movies, taking a very long nap (so long and so deep that I checked her pulse a couple of times), and visiting with Jim and Trish.

Love,
Brian

Saturday, June 16, 2007

Patty wins the corn-eating challenge

Hi everyone:

Yesterday afternoon, we crossed the street to the home of our neighbors Denise and Kevin, and didn't leave for many hours. We chatted on the patio, cooked burgers and dogs and swam in the pool.

When things wound up at Denise's at midnight, Patty was still feeling social, so we then visited Jim and Trish next door for a couple of hours. Kelly and Connor had three sleepover guests, so we had a full house.

When we got home, Patty was still alert, and I was barely able to keep my eyes open. Needless to say, our patient has been doing some pretty solid napping today.

Patty is normally a pretty light eater. You can imagine my shock yesterday, then, when Patty scarfed down two sausages on buns, a small piece of fish and a cob of corn for dinner and then later ate two more ears of corn and a baked potato. I was amazed. I will say, though, that she was pretty energetic; she even made two trips into the pool. I love to see her feeling like a real person, even if she needs more down time the next day.

In the category of "not sure if it means anything," we were suprised several times over the past 24 hours by Patty's inability to remember details of conversations and events that happened just an hour or so before. I'm sure I'm making it sound more dramatic than it really was, but I will say that we both found it a little strange and unsettling.

We found out yesterday that Patty's most recent PRA numbers, from blood drawn a couple of weeks ago, are unchanged at 59% and 99%. We're not really surprised. Hopefully, one of the few remaining options will bear fruit.

Today, Patty is tired but otherwise faring well. More soon...

Love,
Brian

Denise (who is intimidated by NO trench)



Kelly (who by some strange coincidence got MY good looks)

Thursday, June 14, 2007

Dr. Costanzo visit

Hi everyone:

All the photos I was taking of Patty this morning were unflattering, so we decided to try a somewhat different approach--hence, the picture you see here. The mask was crafted around my enormous melon, so Patty's mouth is actually in the nose area somewhere.

Patty had an appointment with Dr. Costanzo yesterday afternoon. The doc agrees that the Rituxan/Cytoxan combo may not be working in reducing the panel reactive antibodies (PRA), but feels it is important to keep trying other options (rather than simply waiting and hoping for a perfect heart.) Dr. Costanzo thinks that total lymphoid irradiation (TLI) is the next logical choice. As always, we heard that this treatment is "generally well tolerated." We shall see...

Dr. Costanzo also noted that Patty's difficulty in tolerating Cytoxan and CellCept presents some interesting challenges after a transplant, because one or the other is typically part of the protocol. Instead, she may have to use one of the "old" immunosuppressive drugs. I am feeling nervous on Patty's behalf, because I don't want her to go through the whole process of transplantation only to find that the drugs she needs post-transplant only make her miserable.

Much to Patty's disappointment, Dr. Costanzo advised Patty against riding on roller coasters or other thrill rides. The issue is not one of fear or excitement being harmful, but a worry about sudden changes in blood pressure that could lead to other hardships. So, if we end up at Six Flags at some point, Patty will be joining me in the observer role.

We're still waiting on news about Colin's passport. The waiting is agony.

Love,
Brian

Tuesday, June 12, 2007

Worries -- real or unfounded?

Hi everyone:

If you've been reading this blog for some time, you know that I've adopted the belief that any symptoms that Patty displays, however benign they may seem, bear watching. Although she seems to be doing surprisingly well, especially in comparison to this same time last year, I keep fretting whenever Patty experiences shortness of breath or any other odd twinges.

Last night, Patty was bothered by soreness in her legs, even though she had not been especially active. This morning, she is very fatigued, and is still in bed even after a full night of sleep. Perhaps this is just her body telling her it's time to recharge the batteries after a busy weekend. Still, I worry...

Tomorrow, Patty has her regular appointment with Dr. Costanzo. If anything emerges from that meeting, I will of course share it here.

Love,
Brian

Monday, June 11, 2007

Back down to earth

Hi everyone:

After an action-packed weekend, we've settled back into our normal life, at least for a day or two. Patty felt a little nauseous upon awakening this morning, but improved quickly and seems pretty energetic. The kids were returned to us at 1pm, and are out enjoying the sunny day (except for PJ, who I would guess is sitting in front of a TV at Kelsey's house.) I've suggested that I'll get a bonfire going for the kids tonight; with luck, I'll be able to coax Patty outdoors for a while. Kelly is excited because her cousin Amanda plans to visit within the next couple of days. And that's pretty much our whole story for now.

I continue to receive calls about Colin's passport. The latest I've heard is that the Canadian Consulate here in Chicago doesn't think the request made by the passport officials really makes any sense. I'm inclined to agree. Our state representative's office continues to call with updates. Hopefully, this will all be resolved soon.

Love,
Brian

Sunday, June 10, 2007

Special weekend Part II

Hi everyone:

Well, Part II of the weekend didn't turn out to be as exciting as Part I, although it was still very fun. Patty, Cindy and I attended the Roger Waters concert at United Center. Originally, we had been told that a short meet-and-greet would be possible, but later found out that they had decided against it. Instead, Patty was given a tour program signed by Roger, and some great complimentary tickets to the show.

The weekend was starting to get a bit long for Patty, so we didn't stay for the full show, although the staging was outstanding and the music was both familiar and well-performed.

Today, we visited Cindy's house for Caleigh's graduation; Caleigh is a wonderful girl, and an amazing student. We had a very nice visit, aside from my new-found phobia about cicadas, to which I was being exposed up close and personal for the first time. I will celebrate their departure. Of course, I was grateful to Brit for showing me that cicadas weren't anything to be afraid of, in the most horrifying and nauseating manner possible:

I am certain I will be plagued by nightmares for a very long time.

Patty's well today, but tired.

Love,
Brian

Friday, June 08, 2007

Special weekend part I

Hi everyone:

Tonight's blog posting isn't going to be about Patty's medical condition (okay, I will say that she's doing well today), about our recent passport woes, or even about the joys and trials of parenting. There isn't even going to be a film review. Tonight was all about fun -- remember the exciting weekend I mentioned? So, for those to whom we didn't blab about our plans tonight, here's a quiz for you.

Is the person Patty is hugging in the photo below:



(a) our daughter Kelly
(b) our friend Cindy
(c) Stevie Nicks
(d) none of the above

Did you guess?

If you guessed (c):



For the longest time, I don't think I've seen Patty dance as much, or smile as broadly, or seem so utterly thrilled with her evening as she did tonight. Patty was treated to a concert by Stevie Nicks (with the kind efforts of Stevie's assistant and her publicist), and then invited backstage. We waited there for a moment--sitting on a sofa in the middle of a parking lot (a bit surreal, to be sure.)

When Stevie emerged from her trailer, she walked over to Patty and then immediately said, "Oh my God, you look just like Meryl Streep...and that's a good thing." They chatted for a brief moment, and then Stevie gave Patty a very special, thoughtful gift that touched Patty deeply. When Patty asked Stevie for a hug and they embraced for nearly a minute, I felt like I was observing one of those Mastercard "priceless" moments. Stevie signed a T-shirt for Patty, and we were on our way.



I would give anything if Patty's every day could be as utterly magical as her night tonight. And she has another special night tomorrow. More soon...

Love,
Brian

P.S. One more moment to share -- Chris Isaak, while performing as the opening act for Stevie, walked around the entire venue, interacting with fans. His keyboard/accordion player also wandered around. At one point, he walked up behind Patty and asked her what flavor slushie she was drinking. When Patty said "Lemon lime -- would you like to try it?" the musician said "Sure" and took a chug. It was both surprising and funny.

Frustration part II (amended)

Hi everyone:

Well, the huge storm we were supposed to get last night turned out to be more whimper than bang; we saw a lot of lightning, but I don't know if we received even a drop of rain.

I just discovered this morning that the easing of the passport restrictions, which has now been enacted, will apply only to U.S. citizens wanting to travel to Canada or Mexico. Canadian citizens (like Colin) will still require valid, current passports. Frustrating...

Patty's not up yet. More later...

Love,
Brian

P.S. Since I posted this message, I received a call from an assistant to State Rep. Tom Cross, who had in turn been in touch with Denny Hastert's office. Although they don't hold much sway over Canadian authorities, it was nice to hear we have their support in investigating options. The regional reps in Canada are also in touch with the Foreign Affairs minister for Canada. I've copied the Candian consulate on our messages. I'm starting to feel somewhat hopeful that this can all be sorted out. Thanks to anyone who is pulling for us on this. Love...B

Thursday, June 07, 2007

Frustration across the board (well, pretty much)

Hi everyone:

Today, day one of summer vacation (sort of), was a bit of a frustrating day. The chaos associated with full-time requests from kids is going to take some getting used to. PJ had no school, and Kelly and Connor came home after half-days. Kelly is hosting her friend Allison (she of the photos with Kelly last night) for a sleepover. Connor must have opened and then slammed the front door two dozen times today, each time allowing entry to a fly the size of a chickadee. Ahhh, summer!

I received upsetting news today. Apparently, getting Colin's passport renewed isn't going to be the piece of cake I had presumed. They are wanting documentation that doesn't exist, for reasons I cannot fathom. As things stand, I have only two choices: drive to Canada twice this summer, to pick up and to return Colin (the same passport rules do not apply to ground-based travel) or wait until Colin turns 16 in January before I have him visit (a prospect I cannot even think about.) The former would have some appeal under normal circumstances, but not with Patty waiting for a transplant. Devin is not an issue, because he is already over age 16.

I wrote the Member of Parliament in the region in which Colin lives; hopefully, he may be able to intervene on our behalf. Also, I saw some suggestion that the U.S. government might relax these rules in the near future. Please keep your fingers crossed. Or if any friends from Canada feel like visiting, and don't mind an extra passenger, we'd be happy to give you a comfy bed (okay, an air bed) and fine dining experiences (all the exotic forms of Hamburger Helper) if you'll bring the boys along.

The Sox games are making me insane, to the extent that Patty basically pleads with me not to watch. More and more, as much as I hope against hope for a turnaround game, I am heeding her wishes. Sigh...

On the positive side, Patty and I have an exciting weekend planned. I'll provide the details as soon as I can.

Love,
Brian

Kelly (the high-school student)



Hi everyone:
Kelly graduated from Plank Junior High last night. Here are some pics:

Wednesday, June 06, 2007

Miserable morning

Hi everyone:

Patty is experiencing some fairly profound nausea today, and may well stay in bed for much of the day. I think that some of her meds do not mix well with some of the food she eats, and the combination wreaks havoc with her system. Fortunately, she does not have the added whammy of the chemo drugs to try to tolerate.

Yesterday, we watched the DVD of The Secret of Roan Inish, an Irish fairy fale. Although the film had been around since 1994, neither Patty nor I had seen it. It tends toward the saccharin at moments, yet overall it is a very enjoyable family film.

Tonight, Kelly graduates from junior high. All through the year she has approached her schoolwork with tremendous energy and enthusiasm (and even a little frustration on those occasions when the grades didn't synch with her effort.) Many times, she worked on projects until late in the evening, and I don't think she passed over the opportunity to complete a single extra-credit project. As of this morning, she has "A" grades in several of her classes. We are so proud of her.

We are grateful that our children are holding up so well at a time in which they could have called for us to cut them some slack. Connor is moving on to junior high this year, a prospect that has us noting how old we're getting. Devin has been working during many of his outside-school hours, and earned a raise just weeks into his job; unfortunately, this same job will restrict the amount of time he can visit this summer. PJ is looking for summer work, and starting into some speech team activities. Colin keeps me up-to-date several times a week on the latest indie music, and still dreams of leading Canada one day. We miss Devin and Colin desperately.

Hopefully, our patient will soon make a rebound, because I can't imagine even wild horses making her miss the graduation ceremony tonight.

Love,
Brian

Tuesday, June 05, 2007

Some minor breathing struggles

Hi everyone:

Patty is having a less-than-stellar day in terms of respiration, after a night in which her legs were inexplicably aching; the former happens from time to time, and I'm not sure how to interpret the latter. The day before, Patty had some mild swelling in her legs; if this continues, this is a symptom that bears watching. We just got back from a 20-minute walk around neighborhood streets; Patty struggled with her breathing for much of our trek. All symptoms with Patty promote some degree of worry, at least in me; Patty still seems to take most of this in stride. I think she finds it easier to deal with the inevitable symptoms of heart failure than with the illness brought on by chemotherapy and other interventions.

We watched The Italian on DVD last night. I thought the movie was amazing. PJ liked it a lot. Patty was less impressed. My opinion is the accurate one.

Love,
Brian

P.S. Go Sox.

Monday, June 04, 2007

Another busy (and fun) weekend

Hi everyone:
Sorry for missing a couple of days in writing; things have been pretty hectic as the school year has been winding down. On the health front, there's little to report -- Patty still seems to be faring pretty well. She needs to go to Edward Hospital on Wednesday for bloodwork (lipids, etc.), but otherwise has little on the schedule in terms of medical commitments. Based on our last exchange with doctors, I think the plan for now is to just wait for a new heart and hope that Patty's existing heart continues to keep her going. So far, so good.
We had pretty late nights over the weekend, and Patty seemed to come through them without compromising entire next days. On Friday, we took Kelly to get a dress for both graduation and for Luke's upcoming wedding; thankfully, we were good bargain hunters and came away with something nice for relatively cheap.
On Saturday, we visited our friends and neighbors Denise and Kevin; after some coaxing, I spent some time in the pool tossing kids around while Patty relaxed and chatted. Yesterday, we grilled burgers and hot dogs while we hosted Patty's former student Emily, her girlfriend Amanda and PJ's girlfriend Kelsey for a visit. We played ladderball (fun game, at which Patty seems to be an instant pro) and then watched Pan's Labyrinth (first time for them, fourth for me.)
Patty and I set out for a walk early this afternoon. When we left our house, the sun was shining; twelve minutes later, we were running through a torrential downpour to get back to the house. I was surprised that Patty moved so quickly, and with minimal struggles to catch her breath when we arrived home. Without the chemo, perhaps Patty can enjoy a day here and there that, aside from taking a dozen pills, seems "normal."
Love,
Brian

Emily, Patty, Connor (with latex glove "balloons")



Amanda


Friday, June 01, 2007

Info from the docs, and a night out

Hi everyone:

Patty is doing well today after a busy night yesterday. She awakened with some nausea, but her meds pushed these symptoms back by late morning.

We heard back from University of Chicago Hospital late yesterday. One of Patty's doctors gave her blessing for our patient to discontinue the Rituxan/Cytoxan treatments, at least for the time being. As you might imagine, Patty was pretty happy to hear this, because it means she'll likely dodge some major nausea.

The doctor also confirmed that she is receiving specific PRA antigen specificity information each month. If I understand correctly, this means that she is looking deeper than the 59%/99% number into the specific antibody types that are problematic. As she explained, she is trying to see if certain antigens have decreased, either in number or in strength. She feels encouraged by the fact Patty has fared well without the milrinone (the continuous IV she used to lug around,) and by the fact she seems "clinically stable" for now. She seems optimistic that if Patty can continue as she is presently, she has some time to wait for an appropriate donor heart. I keep worrying that we'll have another downturn like last year, and the timetable will become much more tense. Still, I guess the doctor's take is good news, so we'll focus on the positive.

Last night, Patty, the kids and I were the guests of the organizers of The Color Purple at the Cadillac Theatre (thank you, Jennifer.) Everything about the show--the sets, the music, the humor, everything--was amazing. By some strange coincidence, we attended on the same night as a group of teachers and students from Oswego High School, so Patty was able to catch up with a couple of former colleagues.

Before attending the show, we stopped at Parky's in Oak Park, which Patty insists has the best french fries in existence. While I will agree that the fries are good--the massive oil stain seeping through each paper bag will attest to that--I won't go so far as to say they are the best I've ever had. I will say, though, that their burger is pretty noteworthy.

More soon...

Love,
Brian