Chicago, Chicago...

...so, I have written about this before: our trip to Chicago for the twins' participation in the Toxoplasmosis Study Group at the University of Chicago. This was our 4th trip up there to see Dr McLeod and her team in the past 5 1/2 years. Before I continue, however, I just need to say something about "Toxo". It sucks - it really does. Yes, I've said that about cancer. BUT, there's a big difference. Cancer can be treated and one can be declared "Cancer free." (Don't get me wrong, definitely NOT trying to make light of it...as I have known 2 people these past few weeks who fought their cancers to the bitter end...)

However, babies born with congenital toxoplasmosis will never be Toxo-free. They are born with that nasty little parasite swimming around in their eyes and their brains -thanks to transmission through cat feces (no, I don't have cats), improperly washed fruits or vegetables, or undercooked meats. So, if you have a cat - keep it inside. If you're pregnant, get tested. Cook your meats, wash your vegetales AND wash your cutting utensils. And if you're not immune, get treated.

Over the past 4 visits to Chicago, I have had the opportunity to talk to other Moms. None of them can remember being ill while pregnant or how they could have possibly contracted the parasitic infection. Some have kids with no symptoms, others have kids with varying degrees of effects on the eyes or in the brains of their children. But the one thing we all seem to have in common is guilt - even if we don't discuss it. How could we have let this happen? We were so careful when we were pregnant. If they were like me, having undergone fertility treatments, I was tested beforehand for everything - or at least, I thought I was. I often wonder if the twins will resent me when they learn more about this affliction. Will Creed be pissed at me because he can't play football or hockey with 2 shunts in his brain? Will Zelda hate me because I transmitted the parasite that caused her blindness?

Shit, I really didn't want to go "there". I think I have gotten off track from telling about our weekend. I'm stopping here. For now.

2010 workin' on a dream...

Trying to break into the New Year while still reflecting on the Old. It's hard to sum up 2009 with good memories so I've decided to do a + and - look back...

Although I was diagnosed with breast cancer in 2008 and had my first surgery before Christmas, 2009 still feels like the year of Cancer, so here we go:

- Had my port-a-cath put in by Dr Ames Smith, BUT +, it was a flawless surgery and easy to recover from.

- Creed hit his chin at Ecole and had his first experience with stitches, BUT +, he was a happy, cheerful, trooper.

- started my first chemo on January 20th, BUT +, Obama was inagurated.

- Had all of my hair cut off and my head shaved, BUT +, shared it with beautiful friends and have amazing photos, thanks to Todd.

- Mom was diagnosed with Stage 2 breast cancer, BUT +, she didn't have to suffer through chemo...

- Lori was diagnosed with Stage 2 breast cancer, BUT +, they were able to shrink the tumor before her surgery.

- 2 months of chemo was hideous, BUT, +, we took the twins to a wonderful outdoor Alejandro Escovedo concert during SXSW.

- Month 3 of chemo was awful, BUT, +, Jerry and Mary visited from NY and we went to see Bruce in concert. Also, modeled in Graphic - the BCRC Art Bra fashion show.

- Final month of chemo was debilitating, BUT +, Manu came from Paris for 3 weeks and I auditioned for a Nike commercial. Also, was contacted by People magazine to do an article about our family's fight with cancer.

- Started Radiation in June, BUT +, got the role in "Driven" - the Nike commercial! Also, took a family trip to the beach and Zelda & Creed LOVED it!! And the People magazine photographer came to shoot us on Father's Day weekend.

- finished 7 weeks of radiation in July, BUT +, headed to Sturgeon Bay, WI to stay with Bill & Kathryn, and then into Chicago to see Margo & Luke and their girls and Gemma, Rowley and Fin and of course, Dr McLeod and the toxoplasmosis research group.

- I was still bald and exhausted, BUT +, Craig and Seth came down to help me take the twins back to the beach.

- Was asked to participate in a Myriad study for genetic predisposition to breast cancer, BUT +, the twins went back to Ecole and and Zelda started her PPCD program.

- Hair was still only under 2 inches long and hated it, BUT +, Zelda and I flew to Pasadena, CA to see Dr Tawansy. Her retinas have remained attached! Creed and Evan took a road trip to El Paso.

- Dad was sick and in and out of the hospital, BUT +, he made it to the twins' 4th birthday party and I was named Honorary Chair of the Breast Cancer Resource Center's Annual Luncheon. I gave the keynote speech.

- Dad was still sick, BUT +, I flew to New Jersey to attend the Camp Beisler reunion and had a wonderful time reconnecting with old friends.

- Lori and tested positive for the BRAT genetic coding and now we have new things to consider in our treatment - which we thought was over, BUT +, I am flown to Beaumount, TX with my friend Deborah to give my speech "Cancer tries on my shoes.." before 1500 people.

- New options for treatment are not good news, BUT +, I am asked to present at Pecha Kucha night with 9 other Austin creatives.

- Dad died...

- Zelda had her 3rd seizure of the year...

- I had my ovaries removed to cut the risk of developing ovarian cancer from 45% down to 4%...there were no cancerous cells in my ovaries.

- Alton visited and Seth and Craig came back for Christmas and New Year's. The kids had a blast. They are happy. healthy and cheerful. We have 3 floors on our house that is under construction. Evan is busy, busy, busy and this year....I will have my breasts cut off.

Happy New Year...

A blind man walked into a restaurant...

back to Chicago for one last time...as we finished our Toxo Family meal at the restaurant near Millennium park, I observed a trio of customers being led to their table. All 3 were chic and well-appointed and obviously European. The woman was well-made up and sported a beautiful head scarf, one gentleman was silver haired and well-dressed and the other was muscular, wearing conspicuously nice attire and carrying a long white cane. He was blind.

As we left our table, I whispered to my friend, Gemma, mother of Fin, "I'm going to introduce Zelda to that blind gentleman." I approached the table carrying Zelda and with aplomb said, "Excuse me for interrupting your meal but we just wanted to say Hello." They were extremely gracious. I placed my hand on the shoulder of the blind man and said, "I see that you walk with a long white cane." He proceeded to unfold his retractable cane and replied with a smile, "Oh, is it white?" The ice was broken. I introduced Zelda and told him that she was 3 1/2, learning French and Braille, and walked with a long white cane as well. He took her hand and kissed it. She leaned into his shoulder and patted him to get aquainted. The woman told us he had a PhD. His other friend chimed in, "And, he's a triathlete." We chatted just for a moment and I thanked them for their kindness and inspiration. Zelda said, "Au revoir."

There are little bits of magic out there and that was a moment that I will always cherish...

Our big fat medical vacation '09...continued...

I thought I should wrap up the summer before I dive into the fall happenings of which there are many. I have so many thoughts/ideas/projects rolling around in my mind that I need to write a bit more often.

So....after our wonderful visit with Bill and Kathryn, we headed into downtown Chicago for our stay at the Hyatt on Wacker. The Toxoplasmosis Study sponsored by the University of Chicago is always so gracious in providing us with our family's plane fare and a night at this centrally located hotel. It just so happened that at check-in we discovered that none other than our favorite president, Mr Barack Obama, was to be appearing in the hotel that night at a fundraiser. The entire place would be locked down early before dinner, so we quickly skipped out with our friend, Margo - who we met years ago during our Telluride Film Festival Days. She and her husband and gaggle of lovely daughters live in Lincoln Park, so we took in the zoo. Zelda wrestled with her stuffed lion, thanks Margo! and Creed whined non-stop about wanting to see Obama. "Why can't I go to the fundraiser?!" Luckily, their attentions were diverted by capable babysitters named Anna, Madelyn and Olivia. That convenient arrangement allowed for the parents to have an evening out at Bruno's latest new restaurant.Margo & Creed waiting for Obama's helicopter...

The next day we were up early to be at the University by 7am. Doctors, nurses, and our favorite: the Oracle - Dr Rima McLeod - to whom we attribute the success and health of our children, were all on hand to put us through the paces. The study should last the lifetime of the children. This was our 3rd trip to Chicago and as the twins get older, the trips will be spaced out a bit but each one involves a developmental assessment, blood work, eye exams, visits with the neurologist, infectious disease specialist, and opthamologists. It's a day's work and despite our exhaustion, we were intent on seeing our friends, Gemma, Rowley and their imp of son named Fin. He is also a toxo baby and we had met them on our last trip to Chicago and immediately felt a bound with this strong, caring and fearless family. The evening was spent at Millennium Park listening to the Symphony and then the entire lot of us descended upon a nearby restaurant. Imagine the delight of the server with 3 toddlers - Fin with his huge smile, crackling and swinging his paper, Zelda needing to get up every 5 minutes to go outside and walk, and Creed demanding his french fries and water and anything else he could get his hands on. It was glorious! And the restaurant staff was extremely gracious...the Toxo Tribe at the Symphony...


We left the next day...as Zelda pushed the double stroller through the airport with her lion in one seat and Creed's tiger in the other...until the next time, Chicago, we love you...

Summer Schedule...

The twins return to "Ecole" a week from today...and all I can say is: "Betty Draper, I am not." I don't know if you watch Mad Men but Evan and I have become recently addicted. Taking place in the early '60's, when life was stylized, sex roles were well-defined yet daring, and suburbia was thriving. The Draper family is one to be avoided - at least in replication. Betty, the mom, a former model and stay-at-home wife, is a tangled conundrum of emotions. Anyway, I won't get lost in that now...it's best saved for a later look.

The summer seemed to start with the end of my treatment. Up until then, the twins had been in Ecole/Summer Camp. About a week after radiation ended, we hopped a plane for Chicago. I will add that Creed & Zelda have flown many times and this one was better than ever. Creed was chatty and engrossed with any movement and mechanical curiosity. Zelda, fiercely dedicated to her new iPod, could actually tell me when the plane was going up, coming down and turning, through sheer feeling.

We headed directly up to Sturgeon Bay, Wisconsin and thanks to Bill and Kathryn - Evan's friends from college - we had a picture perfect visit at their lake house. They are the best hosts, the boat rides were glorious, the hikes were cool and the meals were relaxing. Almost felt like a vacation, despite the fact that we were all constantly chasing the almost 4 yr olds.
After basking in the cool temperatures (n.b. Austin is on Day 55 or 58 or more of 100+ degrees), we headed down into Chicago to spend some more time with Bill & Kathryn at their home. Days were spent at the Botanical Gardens, Creed & Evan played - or more likely observed - golf with Bill & his son, had a little beach time and took a day trip into almost Iowa to look at an old movie theatre that needs Evan's restoration expertise.
to be continued...

A view of Chicago...

Back from chi-town

Well, what a wild ride! No need to dwell too much on the actual travel as there is so much other stuff to report. BUT, our departing flight was delayed by 1 1/2 hours. The twins were very busy (!) in the airport but much more calm on the plane. O'Hare was a nightmare of construction but we did eventually find the car rental shuttle while lugging around babies and all. They upgraded us to a minivan (gulp!) and then we arrived late to the hotel and our appt with the developmental specialist. As it turned out, she was late or misinformed and didn't show up until we were supposed to leave for a reception. Whew! The room's large glass window had a leak, the carpeting was wet and the room was small with no space for two port-a-cribs that apparently the hotel no longer had available. To make a long story short, the accommodations were much improved by the next day.

A wonderful woman named Libby arrived at 6pm to administer some developmental tests to the twins. As Evan ran around the halls of the hotel with one of them, I held the other on my lap while she demonstrated and coaxed them gently to imitate and respond. Creed was an excellent 'show monkey'. He pulled out all of the stops with behaviors I had never seen before. He sat quietly and listened intently to Libby, performing all of the appropriate tricks. Results: he is developmentally in sync with his corrected age of 16 months + some...Good job boy,boy!

As for la petite Z, she was at an obvious disadvantage as she cannot see the toys and imitate. The tests are standardized and not geared to the visually impaired. But from Libby could observe, Z's little brain is processing all shapes and objects through touch and she possesses good 'problem solving' skills. Hurray!

So at 7pm, off we ran to the champagne reception for the Intuit Show at the Artopolis (the ART Chicago Fair at the Merchandise Mart.) We totally pulled a Brittney Spears and jumped into a cab, holding the twins on our laps and arrived just in time to see some wonderful outsider and folk art exhibited by galleries from all over the country.

FRIDAY: We had to be at the University of Chicago by 7am for the toxoplasmosis study. It was an easy 20 minute trip by mini-van and I must mention that Zelda loves that car! As Evan said, we could buy 3 mini-vans for the price of our Land Rover! The minute she is in her car seat she starts giggling, babbling and swinging her little legs.

We arrived and were met by Mari, the study coordinator, who up until now has been a voice on the phone. We sat at breakfast with other families who have kids with toxo of varying degrees and speculated severity. We were seen by the Drs Noble (opthamology), Heydeman (neurology)and Boyer (infectious disease). They examined each of the twins and asked us tons of questions. Blood was drawn, babies were weighed and eyes were photographed. And of course, we were reunited with the Oracle. Dr McLeod, with all of her kindness and wisdom, marveled at the growth and progress of our babies. We anxiously await the arrival of their written reports summarizing our visit and their exam results. It was a long day and after the other families had left, we sat on the floor of the hallway and chatted with the doctors as the twins roamed and explored. They asked "Are these the same babies as last year?". They wowed everyone...

So, the consensus seems to be that Zelda has some sight! As Dr Noble put it: even with a pinhole opening in her eye, she may be able to perceive some light and/or shape. With the appropriate prescription, she may be able to refine whatever information that she is receiving. All the more reason to get her quickly to California to see Dr Tawansy for surgery and an examination under anesthesia...
As for Creed, due to the scar on his right macula, he will need to start wearing glasses. Although he seems to be using both eyes, it is felt that he is perhaps using his right eye for peripheral vision and his left eye for direct focus. Again, get thee to California!

It was a good day, contacts were made, information was obtained and then - we had babysitters...Yes, Margo and her husband Luke brought their 3 girls to the hotel and we went out to dinner! The girls were wonderful, so sweet and kind with the twins. Creed was in heaven:) Zelda was exhausted! The adults went to Follia, a hip Italian restaurant in the meatpacking district. Wonderful food, fine wine and robust conversation. Back at our hotel suite, we returned to find the twins asleep as were we as soon as our heads hit the pillows.

SATURDAY: Up at 7am in a much improved room change - a beautiful suite with a view of the river at the intersection of Michigan Avenue. We visited Millennium Park and took in the work of Gearhy and Kapoor. We drove out to Glencoe to visit Bill & Kathryn - Evan's friends from college. We like driving along Lakeshore Drive out to the 'burbs passing by those beautiful houses. Creed & Zelda got to jump on their first trampoline - woo-hoo! Then, once back in the city, we hit the Contemporary Art Fair. The kids enjoyed it about as much as we did. It's strange, the art world that is. I want to see amazing paintings by people that can handle paint - gimmicks don't do it for me. I am not impressed by 6' x 6' photos of whatever these artists deem interesting yet banal enough to seem desirable at $25,000! Yawn. Everyone was trying sooooo hard to be "different". I want soul, I want technique, I want beauty - traditional or otherwise...
Dinner was fairly close to a disaster. We tried a restaurant in the hotel and ended up taking food back to the room. Again, all involved were exhausted.

SUNDAY: Up early, back to Millennium Park to take in the Crown Fountain - such a great place for kids. We stripped the babies down to their diapers and let them go! They raced into the water and up to the raining stream falling from the giant walls of glass bricks. The changing photos on the walls displayed faces of the people of Chicago. The weather was perfect and we were ready to go home.

Off to the airport with time to spare, we broke our loyal double stroller and had to leave it at the gate. It couldn't be folded down to load onto the plane, but much to our surprise, it somehow made the trip from Chicago to Austin and was waiting for us at disembarkment. All in all a great weekend. Stay tuned.

We're off to see the Oracle...

So, tomorrow we head to Chicago.

The twins are enrolled in a study at the University of Chicago that follows babies born with congenital toxoplasmosis. It is conducted by Dr Rima McLeod and her team of doctors. We love Dr McLeod. We call her "The Oracle" and "The Toxo Guru" among other names. She is amazing. If we can thank the Tiki Gods for saving the brains of the twins, we can thank Dr McLeod for saving their lives.

In the fall of 2005 when the twins were born at St David's Hospital here in Austin and then transferred to Texas Children's Hospital in Houston, Dr Ralph Feigin at TCH put us in touch with Dr McLeod and her study. Upon our initial attempt to contact her, she responded immediately. The doctors at TCH were overwhelmed by the extreme prematurity of the twins as well the obvious surprise of the toxo infection. Dr Mcleod quickly came to our rescue by first answering our questions and then weighing in on their care. She was the one that suggested the VP shunt for Zelda and managed to convince the Tiki Gods to perform the surgery. She was the one who insisted on charting their drug regimens according to their weight gain. She was the one who followed their blood counts when white blood cells or clotting issues were apparent. Dr McLeod found us the connection with Dr Tawansy in California when all of the eye doctors at TCH wouldn't touch Zelda for surgery.

Last year we flew to Chicago to enroll the babies in the study. They were infants, newly released from the NICU. They had shaved heads from surgeries, squirmed and shrieked when blood was drawn and their eyes were examined. This year they will see the same team of experts: infectious disease specialists, eye doctors, neurologists, developmental therapists; they will have blood drawn, have retinal exams, have their hearing tested. I am so excited for the doctors to see their progress. They have hair! they have grown! they walk and dance! they babble and laugh! they eat cheerios, fish and bananas!

I remember one of the first things that Dr Mcleod told me in her quiet voice over the phone at the NICU bedside upon positive confirmation that our twins had this devastating infection. She said "We have seen kids with proper treatment grow up and lead normal lives and go to college." And we're not going to let go of that dream - that is unless THEY decide that they don't want to go:) Then they can just travel through Europe instead.

I need a Sherpa!

Okay, so last summer we flew at least 4 times with the twins - they were sleepy little ones that we held on our laps. We checked all of our luggage and simply rolled the double stroller right up to the gate. When we landed, it was waiting for us as soon as we disembarked. We would rent a car at our destination as well as the car seats so as not to have to haul stuff onto the plane and through the airport. On the plane, we weren't allowed to sit next to each other holding twins because of the oxygen mask rule so we sat across the aisle from each other and handed the babies back and forth. Many a kind traveler offered assistance because with twins, someone always has their hands full. With one baby you can take turns, with twins it's "Wanna switch?".

BUT, this Thursday we are off to Chicago. We are taking 2 toddlers (who walk and climb and don't like to be stationary for too long), 2 car seats (so the twins can be safely strapped into their own seats on the plane and in the rental car), a double stroller (to whisk them through the airport and to use on the streets of Chicago) and assorted luggage including 2 fold up booster seats (so we can safely feed our little angels in the hotel suite). Going out for meals is an option but it is a difficult one. We have enough trouble with it at their age and here in Austin, we happen to know all of the restaurant owners so apologies are readily accepted. They are getting better at it however, because we insist on eating out at least once a week.

Anyway, I know we are not the first family to travel with twin toddlers plus other kids and I appreciate the road that has been paved for us by other brave families. But I really want a Sherpa! I want someone to help Evan negotiate those cumbersome car seats through security and help him strap them into the seats on the plane while I sing and dance and entertain the kiddos as we wait for boarding and delays. I want a Sherpa to take our luggage to the check-in desk and fetch it from the baggage claim and ride with it on the shuttle bus to the car rental place. I want a Sherpa to help us navigate the double stroller through the airport to the gate as well as when they have to carry it around the security checkpoints because it's too wide to roll through the metal detector.

Okay, so I know that I am whining but I am also trying to mentally and physically prepare myself for the schlep - I mean trip...is that so wrong?