The Story

iphone 271It’s been a week since we received the devastating news that John Oliver has cancer. It was one of those moments that delineates life as “before” and “after.” On May 6, a doctor walked into the hospital room wearing a bright, aqua shirt and tie, surveyed the large crowd, and asked if it was ok to speak in front of everyone. My stomach dropped. John Oliver had received a bone marrow biopsy that morning, and the hours since were filled with fretting, pacing, nail biting, listening to music, and finally playing Contre Jour to pass the time. It had been two weeks since Ollie was admitted to the hospital, and while we were eager for an explanation for the pain in his legs and ongoing fevers, this was of course our worst nightmare. I held it together long enough to hear that the bone marrow showed evidence of cancer, most likely neuroblastoma, and we were receiving an upgrade in accommodation with an immediate move to the oncology floor. My calmness was no doubt due to my ignorance of neuroblastoma and its insidious nature.

Since we first arrived at the ER on April 22 to seek treatment for an ongoing ache in John Oliver’s knee and hip, he has had three IVs inserted (both hands, one twice), one PICC line, several sticks to draw blood, countless doses of Tylenol to contend with the persistent fever (he has yet to calmly acquiesce to this, but we have learned that the combination of lemonade and a popsicle help with the yucky taste), x-rays, bone scans, a bone biopsy of his hip, ultrasounds, two MRIs, a CT scan, a bone marrow biopsy (both sides), a hellish visit to the dentist that resulted in three fillings and one extraction (and a generous, guilt-ridden visit from the tooth fairy), two echo cardio grams, hour-long administrations of vancomycin every six hours, several mornings with no food or drink before major procedures, and now we are half-way through the first round of chemo. We’ve had interactions with the ER docs, orthopedics, pediatricians, infectious disease docs, hematologists, oncologists, physical therapists, and of course the lifeline of the hospital, the nurses and clinical assistants. A diagnosis of cancer has since introduced us to the Life Specialists, social workers (<3), nutritionists, and chaplains.

The learning curve is steep when you are six years old and diagnosed with cancer, and John Oliver never misses an opportunity to ask questions. He usually raises his hand in the polite manner school children are taught, but if the doctor does not quickly call on him, he gets impatient and starts saying, “excuse me!” He does this in crowds of 8-10 residents, fellows, and attending docs. I’m so proud of his inquisitive nature and his confidence to ask questions.  I love it when he stumps the experts, and they say, “that’s a great question that no one has asked before. I’ll have to look into it.” Ollie uses his new found knowledge to provide medical care to Princess Rabbit, his beloved stuffed friend, telling her that she will need to take medicine that tastes like poison, but will help heal her, and that he will have to draw blood, but not to worry because it will be through the PICC line, which he is conscious of always flushing before and after. Tonight while I was cleaning his vomit out of the bucket we keep handy, he asked, “why don’t you give my throw up to the doctors so they can study it?”

The nurses have learned his preferences, too. Blood pressure cuff on the leg, thermometer under the arm, oral medicine only from mommy, he will scream when he sees a needle, and he is mostly cooperative when blood is drawn through the PICC as long as the nurse tells him upfront they are doing it, and how many vials. When he must do something that he fears or hates, and he realizes his negotiation to avoid it has failed, he demands silence from everyone in the room (it is amazing how difficult it is for the adults to comply with this request). Every visitor to the room is greeted with, “what are you going to do to me?”

There is no way to sugar-coat neurblastoma. It is cruel and scary. I’ve read way too much online, but have curtailed that behavior, and appreciate the encouragement of friends to not drown in the information and heartbreak available with a simple google search (thanks, Blumberg!). Due to his age (this disease is particularly unforgiving to children over 18 months) and the metastasis of the cancer, John Oliver is stage IV, high risk. The primary tumor is on his adrenal gland, with evidence of cancer on the liver and in his bone marrow. We are still waiting on some tests to provide more specificity of the prevalence of the neuroblastoma cells. It is an aggressive disease, requiring an equally aggressive treatment. Our current plan calls for 4-5 rounds of chemo, surgery to remove the tumor, immunotherapy and stem cell transplant, and radiation. And unfortunately one of the most malicious aspects of neuroblastoma is the high rate of relapse and the futility of treatment of the resistant cells that survived. Therefore, medical professionals do their best to attack it hard and thoroughly from the onset. In other words, this cancer puts kids through the ringer with no guarantees. In my moments of optimism, I focus on all that we have going for us – a fabulous medical team who are facilitating access to the most advanced treatment available (in fact, we are one of the early recruits for a national clinical study that is based on promising improvements in Europe, and if it is replicated here, will result in a change in the US protocol for neuroblastoma), and most importantly, a support network that quickly coalesced around us, providing a foundation when the bottom dropped out. I wish I had the words to adequately express our gratitude.