First, an update from Harrison’s clinic visit on Tuesday:
Harrison is in Consolidation, a phase intended to kill any leukemia cells remaining after Induction. Although Harrison is in remission, there are still cancer cells hiding throughout his body. As such, this is a pretty intense phase, so we have to be on the lookout for low numbers. Earlier in this phase he needed a blood transfusion because of low hemoglobin. He’ll probably get another one later this week or the first of next week. If he doesn’t, we’ll be both grateful and surprised.
Hemoglobin – 8.3 (norm is 11.5-15.5. Transfusion needed when less than 8)
Platelets – 407 (norm is 150-440)
ANC – 900 (norm is 2000-7500. Less than 500 is neutropenic)
He received Ara-C, which we are giving him at home until Friday. He’s also taking 6MP each day.
People with cancer, and parents of kids with cancer, face fears every day. While every parent worries about their kids’ safety, growth, and well-being, parents of cancer kids have daily concerns.
The first fear is relapse. Virtually all leukemia patients achieve remission pretty easily. The drug regimen for leukemia is pretty certain. Even patients who, like Harrison don’t achieve remission during the four-week Induction period, just receive high doses of stronger chemotherapy until their leukemia is beaten back. Those who do not reach remission die from the therapy. Harrison’s nearly life-ending stroke is an example of how the treatment kills kids before achieving remission.
Preventing relapse is the bigger challenge. In the early years of treating leukemia, every patient relapsed after having achieved remission. So oncologists learned that cancer is good at hiding in sanctuary sites such as the brain and testes. Some patients still relapse in the bone marrow, but most relapse in one of these other two sites (which is why male patients are on treatment for an entire year longer than female patients. Successful treatment for leukemia is determined by a five-year event free survival (EFS). For at least five years parents fear relapse.
The second fear is infection. Because these kids are immuno-suppressed, they are susceptible to each and every disease. Hand-washing and Purell can go only so far in preventing infection. For us, we have to keep two other kids away from infections that would never affect them just as much as we need to keep Harrison away from other sick people. And infections that would simply be an inconvenience for the rest of us become life-threatening for Harrison. Parents have to fear that at any time their child, who is already having to fight cancer, might also have to fight off a fungal or bacterial infection. When you read about kids dying from influenza, for example, you can be sure that many of those are cancer kids.
Another fear is the treatment itself. Oncology is not exact; remember that physicians practice medicine. Dozens of clinical trials are designed to see how little chemotherapy is needed both to reach remission and to prevent relapse. They know how much is needed, now they want to know how much they could leave out, because of both short-term and long-term effects of the treatment.
In the short term kids might have a stroke, they might have an allergic reaction, they might have neuropthy, they might suffer cardiac arrest. In the long term these kids lose some cognitive capacity, have organ damage, face sterility, and are psychologically scarred by the terrible experience.
Every day and night parents of cancer kids wonder what side effects their child will suffer, not if their child will suffer them.
For us, these fears, and a thousand others, are all real. We cannot imagine them away. We wake up in the middle of the night and race to see if our child is breathing (like all parents do with their first child). Our hearts stop beating every time the phone rings, afraid the doctor might be calling with more bad news. We jump at every cough, sneeze, or headache. We see symptoms of cancer is our other kids, and actually stop to pray they don’t have it too.
But we are grateful that the presence of our Lord is an ever-present help (Ps. 73). He gives us a peace that smooths the sharp edges of our fears.
He gives us the presence of his people as a place of refuge and comfort.
He gives us his common grace in the wisdom and expertise of the doctors, nurses, and researchers.
The kindness of our God is often shown in the kindness of other people. Not a day goes by that our entire family does not recognize the kindness of people toward our little man. We only wish we could say thank you enough.
Our biggest request for prayer right now is that Harrison’s mindset towards his medicine would change. None of us would enjoy taking dozens of pills. We’re not asking for Harrison to enjoy taking medicine, just that taking medicine would not prove to be such a terrible experience for him. We get the meds in him, but they don’t always stay. He would prefer not to have to take his pills, throw them up, then have to take them again (and sometimes yet again). This is frustrating him. While we have all the fears enumerated above, he has one fear and one fear only: medicine. He needs grace for that part of the journey.