Diagnosis
Jasmine returned from a summer trip to America in 2014 and was preparing to start 4th grade. She complained that her leg hurt one evening after returning from Taekwondo class. I (regretfully) assumed it was growing pains and suggest we wait and see how things went. When the pain continued, and a simple touch caused her to scream in agony, her mom brought her to the doctor.
Quality Health Care performed an immediate X-ray and the image showed a large cloudy area where the fibula should have been. The doctor did not indicate what it might be, but suggested that we urgently obtain an MRI. The MRI results indicated that it was a tumor. But again, nothing could be diagnosed until a full body PET scan was performed. The bad news was that it was indeed a metabolically active tumor. The good news was that it had not metastasized.
Treatment
Queen Mary Hospital immediately scheduled a biopsy to determine the exact nature of the tumor. Within 2 weeks of the initial X-ray she was accepted as a patient and began chemotherapy for her diagnosis of high-grade osteosarcoma (bone cancer). Long term survival has been linked to having the same hospital and surgeon that performed the initial biopsy also perform the bone resection. Improvements for osteosarcoma treatment have been slow and the suggested protocol to treat Jasmine was the same in Hong Kong and New York. We decided to stay in Hong Kong so she could be near her friends. Planning on recovery, we committed to Queen Mary Hospital and made sure Jasmine continued to do her homework, practice piano and play with her friends.
We counted down the cycles of chemo, plotted her platelet, white and red blood cell counts, and embraced the surgery to remove her fibula as a compassionate alternative to removing her leg. The histology of the removed bone revealed that the chemotherapy had killed more than 95% of the tumor. This was great news, and the next four months of chemotherapy seemed like an unnecessary precaution. Statistics showed that since Jasmine was a girl, the tumor was in an extremity, there were no metastases, and she was being treated at the same hospital as her diagnosis, her chances of making it to the 5 year anniversary were greater than 80%. And yet, the chemotherapy continued - causing her to lose her ability to hear high pitched sounds and running the risk of damaging her heart.
St. Baldricks
During visits to HKIS, I saw the St. Baldrick’s posters and reached out to the event organizer, Richard Kligler, to understand why he brought the American charity to Hong Kong. I learned that his son Sean is a Rhabdomyosarcoma survivor. I signed up immediately, but was scared to shave my hair. Having once had a pony tail, my hair defined me. But going bald with - and for - Jasmine was one of the proudest days of my life. I was relieved to learn that the shape of my head wasn’t bumpy and I didn’t have any moles.
Jasmine returned to 4th grade before the end of the school year. She wore a baseball cap in public so she didn’t attract attention, but was never ashamed to look in the mirror. She was just as pretty bald as she was with a pony tail. We began to grow our hair out together, but I lost the race. It seems my hair doesn’t grow as fast, or as thick, as it used to.
5th grade was awesome. And although there were periodic scans and blood tests, life seemed to be back on track. She regained control of her right foot, returned to swim and Taekwondo practice and fought through PE class.
Recurrence
But all was not good. Jasmine began to complain that her shoulder hurt after swim practice. The latest bone scan was clean, so I again suggested that we just monitor it. The next chest CT scan, however, revealed two growths in her lungs. Lung metastases are the most common recurrence for bone cancer. But the sooner they appear, the worse the chances of survival are. In addition, these metastases appeared in different lobes - suggesting an even worse prognosis. Jasmine missed the 6th grade trip to Beijing so she could have the nodules removed.
During recovery, she noticed a lump in her right thigh. And soon thereafter, her left ring finger started to swell and hurt. An MRI revealed that the lump in her leg was most definitely another tumor. A followup PET scan showed that her shoulder and finger were also active tumors - with the possibility of one in her left knee and another deep in her chest. The Queen Mary doctors indicated that there was nothing they could do, and that Jasmine would die.
New York
We refused to give up hope and returned to New York City to obtain treatment at Memorial Sloan Kettering Cancer Center - the same hospital that cured Sean. We hoped that access to drug trials might make a difference if needed. But MSK provided more than that. With more chemo, the tumors shrank and Jasmine enjoyed an extra year of event-filled life. It is not possible to take chemotherapy as a tumor stabilizer forever. It takes longer and longer to recover from each course of chemo. In fact, the more chemotherapy you take, the higher the chances of blood cells mutating and causing acute myelogenous leukemia (AML).
After 6 months of chemo, the doctors felt they could completely remove all of Jasmine’s tumors - which is the only way to cure osteosarcoma. The amazing surgeons at Memorial Sloan Kettering performed a ‘ray amputation’ to remove her finger, a ‘hemi clamshell thoracotomy’ to remove the tumor near her heart, a resection of the tumor in her right thigh, and a novel technique invented in Japan to kill the tumor in her right arm with liquid nitrogen.
Amputation
But cancer cells had survived and were already weakening the remaining bone in her arm. Within a few weeks, the bone broke. Amputation was the only option. Jasmine did not want to lose her arm and fought through the pain until the swelling extended to her hand and she lost all use of her fingers. She soon accepted that her arm was lost and that she would be happier without the painful appendage. In a desperate attempt to relieve her pain, I eagerly signed the medical form accepting all the risks that Jasmine would be exposed to.
With her arm removed, her life improved again, but another tumor began to grow in her knee. Radiation therapy helped reduce the speed of growth and swelling, but did not - and could not - cure her. We were faced with the horrible prospect of cancer continuing to painfully spread throughout her body without actually killing her. Mercifully, the cancer spread to her lungs and she began to have trouble breathing. After a few weeks of using a nasal cannula to deliver oxygen, carbon dioxide began building up in her body faster than it could be expelled.
Mortality
Jasmine came to grips with her mortality. While reading the book “Yearling” by Marjorie Kinnan Rawlings with her home instruction teacher she asked why Jody Baxter, the main character, had to shoot his injured and suffering deer. Her teacher explained how killing a suffering animal was the humane action to take. Jasmine then asked why it was not legal to kill suffering humans. She also read the book “Tuck Everlasting” by Natalie Babbitt which is about a family who drank from a magic spring that allowed them to live forever. Jasmine was moved by Miles, the older brother, who’s mortal wife divorced him because she was spooked by his youthful appearance even after 25 years of marriage. Jasmine understood that immortality is a curse and death is a certainty for all.
At Peace
On a Saturday, one week after her 13th birthday, Jasmine began complaining that her breathing had become increasingly difficult. At her request, we brought her to the hospital. A nebulizer treatment improved her ability to breath but we soon found that she was coughing up blood - not mucous. Jasmine faded in and out of consciousness and by Monday morning, while sleeping deeply, her breathing slowed, and then stopped. We were of course sad, but also extremely grateful that her final moments were peaceful and that her long struggle had finally come to an end.
Motivation
I share this painful story with you to emphasize how far we are from curing childhood cancer. Jasmine was unlucky, but even the ‘lucky’ children live with the side-effects of treatment and may - as mentioned - develop secondary cancers. Much progress has been made on anti-nausea medicine and pain killers to counter the effects of chemotherapy - so that even higher doses can be administered. We need better options for our children - not more of the same. I thank you for recognizing the importance of pediatric cancer research and your willingness to show the world your bald head. This is a fantastic charity, and one that invites discussion by merely walking into a room. Take these opportunities to share your passion for pediatric cancer. Together we can help find a cure.