At the oncology office, Hope immediately had an IV put in her hand, along with a "little house" (actually a styrofoam cup with a drawing on it) to protect it. I then carried Hope through some long hallways to the Children's Hospital where she was admitted and stayed for the next seven days. We got some good news when Hope was officially diagnosed with Acute Lymphocytic Leukemia (ALL), the most common, and most curable form of leukemia. But we also got some bad news -- Hope was considered "High Risk" because of a high white blood count (WBC) at diagnosis (90,000), and because she did not respond quickly enough to the initial round of chemo. This meant that her odds of surviving had dropped substantially. She also had a fairly rare condition called CNS (Central Nervous System) disease, which means that the leukemia cells had made their way into her spinal fluid. Because of the CNS, she would need to undergo 12 days of radiation to her head and spine. During the initial hospital stay, Hope had a (Port-a-Cath) central line catheter put in her chest, which would allow IV access without requiring an IV to be put in her hand/arm everytime she would need chemo over the next 2+ years.
We came to realize that the survivability numbers meant almost nothing to us. Survival for Hope was binary -- 0 percent or 100 percent. Good news or bad news didn't mean much either. Either way we were Hope's parents and we would have to deal with whatever happened. It could be easy or hard, but we didn't get to have a say in it.
The first month of treatment was the worst. We didn't know what we were doing, and Hope didn't know why all this was happening. She went through the first couple of weeks almost never smiling, and we wondered if she would ever laugh or smile again. We had her hair cut short so that when she lost her hair it would not be as traumatic.
When she was diagnosed she weighed about 28lbs. After a month of a Predisone (a steroid that causes intense cravings for salty food), she gained over three pounds. Her eating was unbelievable -- she would consume incredible amounts of ham, hot dogs, chips and chicken nuggets. One day, she ate a whole pound of deli-style ham in addition to what would be considered a normal child's meals. Because of her increased weight and weakened state, she was no longer able to walk on her own.
As the first phase of her treatment (called induction) wrapped up, she was back to laughing and walking again.
As is normal for leukemia treatment, Hope was put on a formal study, and her "protocol" (treatment plan) outlined a regiment of chemo scheduled to run for about 2 1/2 years. The basic idea of chemo is to blast the blood with chemicals to kill all the cancerous cells (and unfortunately most of the good cells), then let the body recover to the point where the blasting can occur again. The first eleven months would be the most difficult and required that she go to the doctor's office at least once a week (although usually several times a week) for various forms of chemo or blood tests. During this period, the protocol was broken up into phases, each lasting about two months. Theoretically, the phases alternated between being more intense and less intense, but in actuality, the easy phases didn't really seem any easier.
Most of the chemo she received was oral or through "tubie" (the central line). One of the worst parts of treatment was when she needed to be "accessed" (the tubie put in her chest by inserting a large needle through the skin); it was supposed to be painless because of numbing cream, but Hope never acted like it was. She didn't mind having tubie in once it was there, she just didn't like it to be put in or taken out.
She had many day-surgeries to get chemo intrathecally (into the spinal fluid) and to withdraw bone marrow for testing. Fortunately, with children, minimizing pain is a prime concern, so she would be put under general anesthesia whenever any invasive procedure was performed.
She was required to be admitted to the hospital anytime she had a fever over 101.5. This was a precaution because chemo would supress her immune system. Hospital stays usually lasted 3-4 days, and she was probably admitted 6-7 times during the first six months of treatment.
In the second month, she had to undergo cranial/spinal radiation every weekday for 12 days. This went (unexpectedly) well after the first couple of visits. Because she had to be perfectly still for the radiation, she was put under general anesthesia everyday. On one of those days, she had radiation at 6:30am at one hospital where she was put under and recovered, and then went to another hospital where she was put under again for intrathecal chemo. Because of Hope's age, there was a lot of concern that the radiation could have long-term side-effects, like learning difficulties, decreased height and infertility.
During the first month of treatment, Hope took a drug called aspariginase, or L-spar, which was administered as an injection in the leg every other day for three weeks (for a total of nine shots). These were very painful, and a nurse told us one of the older kids described these shots as "The Fireball". In the second month of treatment, L-spar was replaced by a drug called PEG L-spar, which only required one shot every three weeks instead of the previous nine. In the evening of Hope's second treatment with PEG L-spar, she had a severe allergic reaction of swelling and hives, which required an emergency trip to the nearest hospital. A dose of benadryl and an overnight hospital stay cleared everything up, but it was pretty nerve-wracking at the time. The unfortunate side-effect to the allergic reaction was that she could no longer take the PEG L-spar, but was instead required to take a replacement drug (Erwinia) that went back to six shots (actually 12 -- one in each leg) for every one PEG.
About four months into treatment, Hope was running a low grade fever (~100 deg) during the day, which seemed to be following a pattern that we had noticed after she had taken a certain type of medicine. At about 6:00, on a Saturday evening, her fever spiked to 101.5. This would normally require an immediate trip to the hospital, but since we had been noticing this pattern, we called the doctor, and she said we could either come in (to the hospital) then to have her blood tested, or give her Tylenol and see if the fever returned in four hours. Because it was already evening, and because we felt that if we did need to go to the hospital it would be easier to do it then, than to have to go in at 10:00pm, we headed down to the Children's Hospital (or the "Green Unit" as it was known because of the color of the wing reserved for cancer patients). We got set up in a room and were watching TV, waiting for lab results when Hope started shaking/quivering. We thought she had gotten the "chills" because she had had the fever, so we called for the nurse to see about getting some warm blankets. When the nurse came in, she looked at Hope, quickly examined her fingernails and mouth and ran back out of the room. We did not know what was going on, but we could tell the nurse was giving orders to other people, and other nurses started coming in to check her blood pressure etc.. They said the doctor had been called, and before we could ask why, another doctor came in, saying he was from the pediatric ICU and that our doctor had called him to check on Hope. He looks at her and immediately started barking orders to get another IV set up, get this and that equipment and he immediately starts pushing fluid into her central line. We still didn't know what was going on, but the room was quickly filled with doctors, interns and nurses. It was very obvious that something was going wrong, but we didn't know what. Her blood pressure had dropped to critical levels and she had gone into what's called "septic shock". This can happen when an infection quickly spreads through a person's body, and it is usually fatal. Through the quick reaction of the nurses and doctors she recovered. It all happened in a matter of minutes, and to think we almost didn't come into the hospital. We were shocked, but also felt extremely lucky -- there is no way we could have gotten her to the hospital in time, had we been at home. This was huge wake-up call for us -- we had to be more diligent because the worst could happen very quickly.
After the initial weight gain, Hope lost weight dramatically. She ate very little, and when in the hospital she would go for over two days essentially eating nothing. I longed for the early days when she was eating obscene amounts of food. Her weight bottomed out at 23lbs at about the fifth month, and then she started gaining a little weight back.
Hope also developed a "lazy eye" (amblyopia), that we suspected was due to one of the chemo drugs (Vincristine). She was required to wear an eye patch for several hours each day to try to correct it.
By about the sixth month, Hope seemed to turn a corner physically and emotionally. She was usually happy, and the treatment had become fairly routine. next>>