Stories
Ryley
Our daughter Ryley was diagnosed with Acute Lymphoblastic Leukemia (ALL) on January 12, 2006. Today Ryley is finished with chemotherapy. She was in chemotherapy for 2 years, 3 months, and 17 days. She took some form of chemo every day during her treatment. She went to the clinic once a week for a full year and every month the second year totaling 76 trips. She has been hospitalized 8 times. She has had surgery 4 times. She has had 10 blood transfusions. She has lost every bit of her hair and had it grow back. She had to go to physical therapy to re-learn how to crawl and then walk again. If you ever want to see a fighter, then come to my house.
For the next two years Ryley’s chances for a full-cure improve every day until she is two years off treatment. After that it is very unlikely that the cancer will return. Deep down we know she is already cured, but we still can’t help being scared.
Going back a few years, Ryley our daughter had been confined in a leg brace for several weeks due to a fall before Christmas. We knew something more was wrong when she woke up in the middle of the night in extreme pain. The next day we were sent to the ER at Scottish Rite for “tests”.
After several hours the ER doctors felt the problem was most likely a blood or bone infection related to her fall and called a Hematology & Oncology Doctor. The Dr. looked at Ryley’s blood numbers and explained that she did not think it was leukemia but possibly a bone infection. She had ordered tests to rule out leukemia, it would be the next day before we received the results. We would not let ourselves even consider cancer. We convinced ourselves it must be a bone infection.
Ryely was not doing well, she had pain and a fever. We were admitted to the Hematology & Oncology floor immediately, but we still did not know that Ryley had leukemia in our minds we were there with a blood problem. Staying on that floor was very shocking, seeing all the pale children with no hair and what we would later learn to recognize in our own child as the “chemo-look”. Little did we know we would spend weeks at a time on this floor throughout the next two and a half years. Like most parents this was our first real exposure to children with cancer.
That next morning Ryley had an MRI of her hip. Later that afternoon the Dr. came in with her boss, Dr. Bergsagel (Dr. B). When they walked in we immediately noticed they were carrying chairs so they could sit down. Dr. B was also holding an MRI image. We looked at each other and we knew this was not going to be good news. It was January 12th, 2006.
Dr. B explained that the MRI had revealed a large mass in Ryley’s left hip and that is was most likely some type of cancer and they wanted to immediately do exploratory surgery do determine what it was. We were devastated.
After about two or three hours Dr. B came back in with what he explained as good news. The leukemia tests had come back positive and Ryley had Acute Lymphoblastic Leukemia (ALL). He explained that this was good because ALL was very curable and that the mass in her abdomen where clumps of leukemia cells that had spilled out from her now brittle bones when she fell. No exploratory surgery was needed.
The next day Ryley had surgery to install a port in her chest where the chemotherapy drugs would be administered. They performed a spinal tap to retrieve spinal fluid in order to look for cancer cells. They also pulled bone marrow from her hip to determine how many leukemia blasts were present in the marrow. Then she received the first chemotherapy drugs in her new port. It was January 13th 2006, Day One of her treatment and a very hard day for a two-year old little girl.
We did not really understand chemo until the nurse came in dressed in a full yellow tyvex suit, face shield and rubber gloves. Only then did we realize this really is a poison they are going to pump into my little girl.
Ryley was slow to go into remission; she was considered a slow responder to treatment. This automatically put her into the strongest arm of the clinical trial and the most aggressive treatment.
During this induction phase of treatment, Ryley developed an infection. She was in the hospital for 14 days, 11 of those days she was in the PICU (Pediatric Intensive Car Unit). The port in her chest had become infected and was clotted. When they cleared the clot it showered her bloodstream with infected blood. She went septic. Everyday in the PICU we were awakened by some new specialist who wanted to run a procedure. One by one her organs were failing. She had stopped eating. She had another surgery to remove the infected port.
Ryley was a very sick little girl at that time and we are grateful that she is still here today. They installed a PICC line in her arm to continue to receive her chemo drugs until she was strong enough for surgery and a new port. When we took Ryley home from the hospital she could no longer walk or crawl. She had not eaten for two weeks and her muscles were suffering badly from atrophy and her hair was coming out in clumps.
Dr. B. told us that Ryley was a fighter, but we already knew that. He said serious infections have a bright side…they kill cancer cells.
Ryley had surgery to install the second port late March 06. We began taking her twice a week to therapy to again learn to crawl and then walk. Ryley quickly improved after the infection. We fell into the routine known as chemotherapy for the next two years.
Life is different now since that day in January, the world no longer looks the same to us. We now truly understand what is really important. We have met many special people over the past two years and we will continue to be involved with the disease going forward.
Lindsey Ann
Lindsey Ann was diagnosed with kidney cancer in September 2006. After surgery and chemotherapy Lindsey now has been in remission for over a year. Here is how her “papa” Jeff explains the experience of pediatric cancer.
Having childhood cancer invite itself into our home, our lives, and our precious little Lindsey Ann has been the best, and the worst, event of our lives. The childhood cancer “experience” can be best surmised by relating it to a tornado. It was the single most terrifying experience that our family has ever known.
Our personal tornado hit us without warning… There were no sirens announcing its coming and absolutely no chance to prepare. It was upon us in an instant and we were all being tossed about on the raging winds of uncertainty. We were all scared and we were quite literally face to face with the very real presence of death.
In an effort to comfort those that are currently being tossed about in those same winds of uncertainty at this very moment, I could lie... I could tell you that my family survived unscathed. I could say that once the storm passed we embraced the sunny skies and that we've been living happily ever after.
The problem is that anyone that has ever been swept up in this tumultuous tempest would most likely take offense to that, and rightfully so. They would take offense because deep down they know the truth...
When the tornado called childhood cancer hits your home and your family it quite literally destroys it. It rips off the roof, shatters the windows, and tears the entire structure from its foundation. It will leave in it's wake a bittersweet longing for the way things used to be, a euphoric sense of victory through faith for having survived, and a heartfelt desire to build anew on that old foundation of family and home with newfound insight into what is truly important.
Maddie Height
Once upon a time, in a place that is no more,
Lived without Cancer, before I turned four.
Now I am six and almost seven,
I talk about dying and going to Heaven.
Lots of times it’s hard and can’t keep things straight,
My mom says it’s the chemo and all the medicine I ate.
I worry too much and wake up at night screaming,
Mostly I’m crying because I think my mom’s leaving.
The worst thing is that I don’t know what I did.
How come I got Cancer when I’m just a little kid?
How come?
-written by Maddie Height age 6