Cindo de Mayo

The greater Wilmington area website (http://www.visitwilmingtonde.com/) opens up with "Congratulations Joe Biden! Come be a tourist in Joe's backyard! Lodging, Dining, Shopping, Attractions, Meetings, Reunions, Weddings and Sports. Nowhere does it say "Come have your seriously ill child treated at the prestigious Nemours Foundation/ Alfred I. duPont Children's Hospital."

The morning started out great because when I say that Sylvie was hungry, she was HUNGRY. We're talking 2+ bowls of vanilla ice cream, some cheesy eggs, some French toast, French fries and yes, potato chips. I made her an omelette at home and thought, what the heck, I'll make her an organic turkey hot dog. When I showed Sylvie the hot dog this morning, she ripped it out of my hand and shoved it in her mouth. Michael and I were pretty pleased to say the least.

Ellen, the advance practice nurse, told me how much she loves Sylvie and hearing her talk, even if she's in a poisonous mood.

Sylvie's counts continued to be off the map today. When one thing balances, another thing looks screwy. Highlights or lowlights include:
WBC 1.3 C (for Critical but "normal" for her condition right now)
Hemoglobin 10.01 (still low but much better!)
Platelets 108 (still low but up from yesterday's 19)
Magnesium 1.4 (still too low, frustrating)
Phosphorus 2.7 (low)
Trust me there about 15 other things that are either too high or low as well.

The two therapy greyhounds dropped by and Sylvie was pretty happy to have the skinny little dogs sitting in bed with her. I think Michael was pretty psyched too. Dr. Steele came in for rounds and said since Sylvie still has no fever, if the electrolytes get better tomorrow then perhaps Sylvie can go home on Thursday after her Vincristine. I brought up the CT-scans and the barium which are scheduled for 11:00 on Friday which they will figure out tomorrow and let us know. I have a sinking feeling they will want to insert an NG tube overnight which makes me very upset because Sylvie will feel like it's her fault. Or I am projecting that feeling on her. Not sure.

Sibel came around 10:30 so that Michael and I could leave for our 2.5 hour drive south on the NJ Turnpike and 2:30 appointment in Wilmington. I have to admit, I was excited to listen to music other than Sylvie's playlist. We traded Audra Rox, Suzi Shelton and Laurie Berkner for Whiskeytown, KT Tunstall (who played barefoot in my office once!), Keane and Matthew Sweet.

My dad called me en route-- small world--he went to see his internal medicine doctor, Dr. Stewart Siepser. They've been patient/doctor/friend for nearly 30 years I think. Dr. Siepser made the usual small talk, "How's the family" and my dad proceeded to say not quite good. When my dad said Sylvie's name, Dr. Siepser said, "Sylvie? Sylvie Hughes is your granddaughter?" My dad was a little puzzled. Dr. Siepser continued, "Michael Hughes is your son-in-law and married to Audra?" My dad did not know where this was going. And then Dr. Siepser concluded by telling my dad that he went skiing in Vail with him and "his friend Andy" last year. He knew all about Sylvie but never made the connection to me or our family. I only saw him once as a patient myself, when I got dysentery in Los Angeles while on a business trip in 1994 and had to go right to my parents house from the airport because I had a 105 fever and didn't want to stay at my friend Mike's unairconditioned apartment on Pitt Street in the Lower East Side where I was living while looking for an apartment. Dr. Siepser's even running in the Ridgewood Run/ Strides For Sylvie! Like I said, small world.

The drive to the Nemours Foundation/ Alfred I. duPont Children's Hospital in Wilmington, Delaware took 2 hours 15 minutes. We pulled up to the free valet parking which really means "will take long time to get car" and were simultaneously happy and sad staring at the 20 or so Radio Flyer wagons waiting in the lobby for parents to cart around their kids, their belongings and so forth. After eating salads in the lobby, without saying anything to each other, one thing is very clear. This is not Hackensack University Medical Center. It's a pediatric hospital. Lots of kids. Lots of sick kids. Ok, there were lots of healthy kids receiving follow up treatment, but it was a little disheartening. Is it wrong to say that we've grown accustomed to our very own hospital whose lobby looks like the Shore Club?

We navigated our way to the 'blue' section of the hospital, south wing, second floor, special surgery desk where I signed in and paid the $30 copay in advance. The waiting area had the same Romero Britto lithographs as HUMC, TV blasting Nickelodeon, and the usual assortment of parenting magazines. Again, it's not as new as the children's hospital at HUMC which I knew going into it. Michael and I are very conscious of the fabulousness of HUMC and are entirely focused on Sylvie's medical care. Joan, Dr. Steven Dunn's secretary, came out to say he was in emergency surgery and was running a little behind. I heard her whisper to the receptionist about refunding our money and I thought, oh no, they're making us go home, what do we do now? But alas, they just didn't want us to pay anything and we were whisked around the corner to Dr. Dunn's office.

We were seated at the equivalent of a dining room table in his office when in-walked Dr. Dunn still in his surgical scrubs. You can't help but immediately like him. We reviewed Sylvie's CT scans on his computer which believe it or not, we had never actually seen before. Wow is all I can say. Then we talked procedure stuff. Dr. Dunn has done over 30 resections, over 120 liver transplants, etc. He's unequivocably the #1 liver surgeon in the country, transplants or otherwise. He explained to us what they will look for in Sylvie's CT scans on Friday, the concern being how close the tumor is to the portal vein. Otherwise, he said Sylvie's response to the chemo has been fantastic and that her liver after 2 rounds of chemo was potentially resectable then. So we really like him. AND we really like doctors Valda and Alexander who are the chiefs of pediatric and adolescent surgery at HUMC which is one of the top ten hospitals in the country. A good dilemma to have, I suppose? We were then given a tour of the hospital, the surgical floor waiting rooms, PICU (Pediatric Intensive Care Unit), Ped Onc, Surgery and so forth. We were underwhelmed by the patient floors, I have to admit. I'm not saying that Sylvie has to have a private room with a giant flat screen tv (but I mean, what's wrong with that???) however I do get insanely wound-up imagining Sylvie sharing a room in a non-cancer wing with a non-cancer patient whose sibling comes into the room sneezing. I like her being treated like the girl in the plastic bubble at HUMC. Not to mention, let's face it, if Sylvie contracted any type of infection at the hospital it would a). be bad and b). delay our family unit from leaving Delaware for a potentially long time. I mentioned it to Dr. Dunn's associate who seemed puzzled because they do have a lot of patients with suppressed immune systems or hepatoblastoma and it's never been a concern of theirs. We left with a giant decision to make and then drove around the corner to the Ronald McDonald House to see what our family's living quarters would be like. I may not like McDonald's food, their contribution to obesity and Type II diabetes and effects on agribusiness however, Ronald McDonalds House-- it's pretty awesome. We were given a tour by a lovely volunteer named Phyllis; I did think for a second that Michael was going to ask half-joking, if they serve McDonalds food. He did not.

So we have a giant decision to make. Surgery is scheduled HERE for next week and Dr. Dunn is also ready, willing and able. Extraordinary liver surgeons, less then spotless hospital versus chiefs of surgery at a Top 10 hospital who only do 2 of these procedures annually but spectacular post-op medical care 20 minutes from home. Both procedures would be the same. As my rabbi pointed out, you can actually look online and see a step-by-step in case you're curious. I am going to talk to Dana in Dr. Dunn's office tomorrow, to Dr. Steele tomorrow, email Dr. Harris who is on vacation in Europe, and one of the night nurses who we really like and has a son Sylvie's age who had serious surgery here. And don't be fooled, both duPont and HUMC have their own agendas and want Sylvie Hughes hepatoblastoma treated in their facilities.

We drove back to Hackensack marveling how we made it to the hospital in Delaware without getting lost yet couldn't figure out what exit to get off the Garden State Parkway in order to get back to HUMC.