A Tough Start
Addie struggled to thrive as a baby, so her mother and I pushed to have various testing done to determine what was the reason. Her paediatrician asked for an ultrasound to be taken on her abdomen. At Addie's one year check-up, we were told the results indicated an unknown mass near her left kidney. Frustrated with the slow pace, that is our medical system, we asked that more be done and a CT scan was soon ordered.
The News
The paediatrician soon called back with the terrible news that the mass was most likely a tumour and that we should get down to Children's Hospital as soon as possible to have further tests done.
After a number of scans and tests we were asked to sit down in an office on the Oncology ward and were told by Dr. Schultz that Addison had what is known as Stage 4 neuroblastoma. The world gave way under our feet as we were informed that Addie had a 30% chance of survival.
Diagnosis
Neurobalstoma is a cancer of the nerve tissue and is often found near the adrenal glands, which reside just above each kidney. It is a very dangerous cancer that only affects 5 out of the 150 children that are diagnosed with cancer eah year in BC. FYI: Tom Hanks is one of its biggest spokesmen. Only within the last 20 years or so scientists are beginning to make in roads against this form of cancer with research focused on proton and gene specific therapy. For Addie, the main tumour resided above her left kidney and was about the size of a golf ball. Many children are not diagnosed until the age of 5 when the tumour has grown to the size of a football. Fortunately for Addie, she has a persistent Type-A mother who fought hard to have Addie's flourishing issues examined thoroughly.
Treatment
Today, Addie has a five foot long necklace of warrior beads made out of various colours that represent the surgeries, procedures, and pokes she has had to endure over her short life. I will only speak to the most important of those beads here.
Due to the encapsulated state of her primary tumour, Addie's doctors felt confident that they could perform surgery right away and get it out of her body. After its removal, a biopsy confirmed that it was indeed neuroblastoma. Dr. Schultz then informed us of our plan of attack. |
Those wonderful stem cells
One way that Oncologists fight Neuroblastoma (and many other non-blood related cancer) is through what is known as a Autologous-Stem Transplants. Over a number of hours, Addie's blood was put through a machine that collects bags of clear healthy stem cells that will be re-introduced into her body after her treatment is completed. As a parent all I can remember is the smell of the fluid that the stem cells are stored in! To many it smells like oysters, but to me, a person who grew up in a British household, it smelled like Libby's Canned Creamed Corn. Yuck! Suffice to say I have never eaten them since!
Thanks be to flowers
One of Addie's favourite flowers today is the lotus flower as she understands the Buddhist concept that out of our lives of mud (suffering) something beautiful grows (us). What is ironic is that it was because of flowers that Addie is alive today! As Dr. Schultz was explaining the next stage of treatment (Chemotherapy), he made sure to point out that one of the chemotherapy drugs that will be injected into Addie to destroy her cancer, originates from a flower discovered by a cancer researcher years ago. Let me pause at this moment to give kudos to the greatest Canadian ever to live; Terry Fox (sorry Tommy Douglas). Addie's greatest hero is Terry, since if not for him and the millions he has raised for cancer research, Addie would not be alive today!
Wipe on wipe off
Over the course of 8 months or so, Addie was put through a routine of chemotherapy and recovery, chemotherapy and recovery, chemotherapy and recovery, etc. For each cancer patient, this regime of chemically killing the cancer cells and unfortunately your own body's immune system starting with your bone marrow (thus the re-introduced stem cells once the treatment is over) is different and complex. But, suffice to say for her mother and I, it was all about avoiding infections. You see, as the poisonous chemicals are introduced into a 14 month old body, they begin affecting blood counts to the point where often they were at zero. For those of you who have had toddlers you will understand their amazing curiosity streak whereby they will crawl, climb, and kinda walk to whatever they are interested in and then put that thing in their mouth, It became common for our routine to involve chemotherapy, low counts, exploration, and infection. Addie would often be found right back into the hospital after her chemotherapy as the amazing nurses, doctors and staff of Children's would fight hard to protect Addie from getting too sick.
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a place of miracles
There is something weird/mystical/spiritual about Children's hospital. Many a night, Jenn and I (we spent 2 night shifts with Addie) would escape from this place of worry while Addie was sleeping and closely watched by her nurses. We would walk down to Safeway on the corner of Oak and King Edward and get a treat to eat. During our walk, we would have time to contemplate, de-stress, and reflect as we walked by a beautiful nearby Synagogue. But as we came back to Children's, we sensed a renewal of energy as this was the place that could save our daughter. Obviously, Jenn and I would never want you to have to visit this place, but if you do please realize that it truly is a place where miracles happen every day through the hands of it many doctors, nurses, and support staff.
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A Date to remember
When we entered the Oncology clinic at Children's on December 27th, 2007, we knew something was up. The nurses were all smiling and they informed us that even Dr. Schultz was giddy. We soon learned what all the fuss was about. Dr. Schultz came into his office where we were waiting patiently and announced "It's gone!". The treatment had worked and the last set of scans confirmed that Addie was now NEPD (No Evidence of Progressive Disease)! We were on cloud 9! Weary of course, as parents of children with cancer often become, but excited. Addie still had her transplant to go, but we were excited that her body had responded well to the chemo!
Reboot
At the start of 2007, Addie had recovered from the destruction of her bone marrow after a last set of intensive chemotherapy and was re-introduced to the stem cells that were collected from her body way back at the start of her treatment. It was a tough go. She had come close to being sent to the intensive care ward as her body endured blood counts so low that recovery was often in doubt. But as usual, our amazing fighter came through with the care she received!
Scares
Just before Addie was released to go home, we had a meeting with Dr. Schultz and were informed that Addie would probably never be "out of the woods" when it came to neuroblastoma. We were informed that until Addie was 18 years old, she would have to return to Children's hospital first tri-monthly, then bi-annually, and finally annually for check-ups that included MIBG (neuroblastoma specific nuclear) scans and CT scans. Since that time, Addie has had two scares where we faced the thought of her cancer's return. Fortunately, the first was proven to be nothing whilst the second was a benign tumour known as a hemangioma.
Roller Coaster
Addie came to her mother and I complaining of back pain just after Spring Break this year. Considering the tough year Pen High had, I thought surely the year could not get worse. But the pain continued and so did our worries. Addie's oncologist, Dr. Schultz, had the same concerns and asked for Addie to be brought down to Children's for tests. A CT was ordered and preliminary result came back all clear. Addie's pain continued as did our worry and finally I was forced to take her to the emergency ward at Penticton Hospital. Dr. Parameshwar was on call and he informed me that he would talk to Dr. Schultz the next day.
Back to Children's
The next day Dr. Schultz contacted Addie's mother and asked for Addie to come down to Children's for more tests. . . . (please see update page)