Adios Cancer?

Adios Cancer, don't let the door hit you on the way out!

Michael and I tossed and turned all night. I was relieved when Sylvie woke up at 6:05 and we could all get up. For the next hour we played a game where Sylvie asked for egg wraps and wafer cookies and we tried to distract her. Honestly, we were excited to leave for the hospital at 7:30 am. Sylvie found my last hidden stash of lollipops in the back of Michael's car and we spent easily the next two hours preventing her from eating them. She was VERY mad.

We checked into the surgery admissions by 8:00 am and Sylvie was still raging mad about the lollipop. She kept asking me to bring her to the cafe for fish sticks (really, mozzarella) and French fries. I lied and said that I ordered them.

I was happy to see our friend Deanna who would once again be Sylvie's O.R. nurse. I first met her when frantically looking for the Emergency Room on February 11th and she's been checking in and checking up on us ever since. Not to mention, Dr. Valda saved her life as a child which counts for something, in fact a LOT.

Dr. Valda came in and got the consistent psycho-Sylvie reception as always. We still had not [ever] met Dr. Frederick Alexander. I was beginning to think perhaps he's deficient in the personality department and he was intentionally staying away from us but I would be proved wrong later when we actually met him and he's a totally lovely guy and most importantly, an amazing surgeon like Dr. Valda.

Heidi from Child Life came up with a make-your-own-tiara kit. She and Siobhan always know just what Sylvie will enjoy. I mean, it's a little predicable (i.e. sparkly stuff, beads, Play-Doh, Princesses, Barbie, Dora, Hello Kitty) but the fact that by 9:00 am, it's readily available is quite amazing to me. Siobhan came up shortly thereafter, too.

Since I took Sylvie to the O.R. last time, Michael suited up in the white paper jumpsuit. Sylvie refused to put on a hospital gown or the fabu-Princess gown that Ann had especially-made so a hippie-diaper-clad and otherwise naked Sylvie was carried into the O.R. kicking and screaming. I had been hoping for a family hug, a quiet moment where Michael and I could tell Sylvie that everything was going to be ok and the bump in her tummy would be officially vamoose but alas this was as good as it was going to get. I sensed a massive wave of emotion and tears so I asked all our family to leave so I could be alone, sit in the big green chair and cry it out.

Michael came out and they gave us a pager, like at Angelo & Maxies steakhouse or any other restaurant with high volume and pagers although we weren't planning on going far enough to need it.

Dr. Valda said surgery would take around 3-4 hours although at 4 hours he said that everything was going according to plan but they underestimated the time and it would be longer. I can't imagine the delicacy involved with two surgeons working side-by-side on a 23 pound toddler for this many hours. Andy came by for moral support (and seltzer for his "wife" Michael) and we ran into Dr. Valda in the kitchen who had just finished up (clocking in at 5.5 hours). Tumor be gone!
Michael then joined us and Dr. Valda said they removed the whole tumor and that it was mostly necrotic (DEAD tissue which is great). There was inflammation on her abdominal wall but not any cancer. They carefully removed the tumor and a safe "margin" around it. The tumor went back near the Vena Cava but ultimately after a few passes, were able to shave off enough cancer-free tissue. In fact, they were able to exceed the minimum margin for removing hepatoblastoma which is great. Sylvie lost a lot of blood, between 200 and 300 cc's which is about 10% of her blood volume.

Fifteen minutes later Dr. Valda said Sylvie was in PICU so Michael and I followed him there where Sylvie was in and out of consciousness. She squeezed our hands and asked for water. Three nurses were working around us and Dr. Stephen Percy who is the head of pediatric critical care at HUMC and vice-chairman of the Children's Hospital (not to be confused with Steven Pearcy who is the singer of RATT) was equally busy examining and monitoring Sylvie. PICU is a very serious place. There is no time for idle chit chat and everyone works incredibly hard.

Dr. Alexander came by and described the procedure and outcome to us in detail as I've listed above. Shortly thereafter, we got a warm and fuzzy surprise visit from Dr. Harris (Sylvie's oncologist who is the head of Pediatric Oncology), Annette Sinski (Sylvie's Advance Practice Nurse in the Reuten Outpatient Clinic) and Linda Rossini (head nutritionist for Tomorrows Children) all came by to visit and talk about Sylvie's amazing response to treatment and surgery.

I'll spare you every last detail but will say this: Sylvie has an A-line or arterial line in her radial artery on her left wrist, a catheter monitoring urine output, an NG-tube that suctions out bile and anything else collecting in her stomach, one port line accessed, an oxygen monitor on her toe, a heart monitor and I'm sure I'm forgetting a few. In in all, the IV pole has 6 bags hanging from it and 10 different lines running through various pumps into her body. They just started calcium and FFP which is fresh frozen plasma to help with her blood pressure and blood-clotting factors. All of this is normal. Sylvie's AFP (alpha feta protein, tumor marker in her case) is 55 which is great and significantly down from over 500K in February. It has a long half-life, too.

We got a peek at Sylvie's incision because she does not have any bandages-- only a dissolving transparent tape. The incision stretches from her right hip high over her navel and a little past it. It's pretty friggin' massive. I had to lift my jaw off the floor when I saw it. I remember the pain in my abdomen when I tried for the first time to walk after delivering Sylvia via C-section. I cannot even begin to imagine the pain this will cause her. I'm cautiously optimistic but there's no way this kid is going to walk until at the earliest, July. My mom had a good idea: Swimming. The buoyancy might feel really good to Sylvie.

She's in and out of sleep. Dr. Valda keeps coming in to check on Sylvie too. Even he joked that when Sylvie starts yelling at him, we'll know she's back to normal.

Even though Sylvie is in PICU and has a nurse's desk immediately outside of her room, Dr. Percy is having Sylvie moved to room that is closer to the central PICU desk for even closer monitoring.

Michael and I are both spending the night here with Sylvie.

On an emotional note, I wonder, since the tumor is no longer inside of Sylvie, does that mean she is cancer-free? Are we rid of this awful disease? I say WE because it affects us all, albeit Sylvie a whole hell of a lot more then you + me. Can we safely say we're more than halfway through putting this awful nightmare behind us? We are confident that we made the right decision to stay at HUMC for Sylvie's surgery. Her medical team and treatment continue to be the BEST BEST BEST. When we talk about Team Sylvie, I know many of you think of our running team, but really, Team Sylvie also extends to the 30 or so professionals at HUMC who have also become our extended family.