Dial C for Cancer

We brought Sylvie to the pediatrician Tuesday February 11 when she complained about a tummy ache and seemed very lethargic. I had talked to her pediatrician Dr. Larry Rosen on the phone by 7 am that morning and we were eager to see Dr. Maya Castillo. Dr. Castillo felt Sylvie's abdomen and immediately sent us to the
pediatric ER at Hackensack University Medical Center for a CTscan and bloodwork because Sylvie's liver felt swollen and she looked anemic.

I thought maybe it was her appendix (no fever though), or maybe salmonella from touching a lizard at a birthday party the prior weekend (I have a vivid imagination) or lastly, Hepatitis B since she hasn't been vaccinated for it and it would be just our luck for her to become afflicted with it. My husband, having stared at Dr. Castillo for the entire visit, thought otherwise. We drove in silence to the hospital. Fast forward a lot of waiting and an IV because Sylvie was so dehydrated that when she cried, she couldn't even produce any tears.

To say we were shocked, horrified, devastated when Dr. Michael Harris walked into our little ER suite and introduced himself as the head of Pediatric Oncology is an understatement. When he ordered a second scan of her lungs we went through the whole range of emotions all over again. Now it’s Dr. Harris who we are entrusting with the care and cure of feisty little Sylvie.

Here the journey begins.

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Sylvie’s being cared for by an incredible team at Hackensack University Medical Center led by the aforementioned Dr. Michael Harris who is the head of Pediatric Oncology.

Sylvie’s condition has been diagnosed as stage 4 hepatoblastoma tumors on her left and right lobes of her liver. There is also 1 lesion on each lung. Treatment includes an aggressive chemotherapy program comprised of a combination of 4 drugs. She will undergo 4 cycles of chemo ending late April with the surgery in May. Dr. Harris’s goal is Sylvie to be up and running (and potty trained) this summer. The great news is that Sylvie’s cancer is curable.

Almost all pediatric cancer hospitals in the US are part of the the Children’s Oncology Group (COG) cooperative group created with the mission of studying childhood and adolescent cancer, sharing data, treatments, trials and so forth. Including Sylvie’s cancer. In essence, Sylvie’s diagnosis and treatment has been evaluated by pediatric oncologists all over the country.

We had our first "big meeting" with Sylvie's team last Friday, Feburary 13th (and my friends make fun of me for being superstitious???). Sylvie will most likely need a liver transplant when all this is done because one of the tumors is in a 'difficult' location for lack of better words. Hearing that was only slightly less terrifying than our first introduction to Sylvie’s medical team and you can bet it reduced us to puddles of tears, however we have been reassured how different pediatric cancers are in that:
1. kids are more resilient than adults and
2. many pediatric cancers are curable and
3. children have an easier time with organ transplants, especially the liver.

Dr. Harris has spoken to numerous pediatric oncologists and surgeons (their are 5 surgeons in the US who perform the procedure on children) and has been overwhelmingly directed to Dr. Steven Dunn, chief of the division of solid organ transplantation for the Nemours Children’s Hospital at the Alfred I. du Pont Hospital for Children in Wilmington (www.nemours.org). They sent Sylvie’s CTscans to Dr. Dunn we hope to meet with him soon. We’ve received a lot of questions
regarding pediatric liver transplants which we don’t know the answers to yet. Our immediate task is Sylvie’s chemo. One day at a time.

We’ve been advised numerous times to not Google Sylvie’s condition because the information available online is very outdated and inaccurate. There are more recent studies that have yet to be published. That being said, of course we’ve scared ourselves silly by Googling, please save yourself the effort.

We are so fortunate to have such incredibly supportive friends and family not to mention Sylvie’s little friends and classmates. We could not have made it through the past ten days if it wasn’t for their constant presence, shoulders to cry on often, physician referrals, A+ blood donations, prayers from at least 6 religions 9 (and counting!) that we can think of, goodie bags and incredible home cooked meals, princess presents galore and let’s not forget help around our house and with Lucky.

Michael and I are bracing ourselves for the next step—caring for Sylvie at home and her recovery. On that note Sylvie has a staph infection so her return home has been delayed to Sunday 3/1 so she can receive a full course of antibiotics.

Sylvie is full of fire and proceeds to tell 90% of the hospital staff and 90% of her visitors to “GO AWAY,” “LEAVE ME ALONE,” “I FEEL GOOD,” “DON’T TOUCH ME!” and is quite a hit on the 5th floor. She has gone so far as to clock one of the night nurses on the head with her Disney princess camera.

As my friend Gail told me, we aren't given more than we can handle. I reflect on that often.