Q. How did you guys find out Jack had Leukemia?
A. Starting around Christmas in 2011 when Jack was five and a half years old, he started feeling unwell and had strange symptoms that came and went. One minute he would be running around happy as a clam and the next he would be curled on the couch complaining of aching bones. He also had a low grade fever, fatigue, headaches, unusual emotional outbursts, and I noticed a loss of dexterity when he was playing with Legos. This went on for over a week before we decided it wasn’t a flu, growing pains, or him trying to get out of school. I took him to see a pediatrician, thinking it might be Lyme Disease or Mono. Upon examination he looked fine to the doctor – just a bit pale – and the doc thought he was just anemic. We decided to double check on his iron levels with a blood test. That blood test ended up showing that he had large amounts of unusual white blood cells, which indicated Leukemia, and he started treatment the next day.
Q. What kind of Leukemia does he have?
A. Leukemia is a cancer of the blood. Jack’s immune system just happened to go a little wonky and started producing too many immature white blood cells – called lymphoblasts – that crowded out the normal cells and made it impossible for him to fight off illness. This specific type of cancer is called Pre-B Acute Lymphoblastic Leukemia (or ALL for short). ALL is the most common type of Leukemia among children.
Q. What caused Jack’s Leukemia?
A. We don’t know. In some kids this type of cancer can be genetic but this is not the case with Jack. He was never exposed to unusual doses of radiation or other chemicals. Apparently we all make cancer cells at some point, but most of those cells just get flushed out and never get a chance to become a problem. Jack’s cancer cells ended up sticking around and multiplying instead.
Q. Is he done with chemo? How long does treatment last?
A. Treatment for male children with ALL lasts about 3.5 years and it goes in three phases. Jack is currently in the third phase, called Maintenance, where no cancer cells can be measured in his blood but he must stay on lower doses of chemotherapy in order to make sure he doesn’t relapse. If all goes well, he is expected to be done with treatment in March of 2015.
Q. How often does he go into the hospital for treatment?
A. He goes in every month for an infusion of Vincristine, which is one type of chemotherapy administered through an IV that is hooked up to a Broviac catheter (which stays in his chest throughout treatment). Every three months he also gets a lumbar puncture and a chemotherapy drug called Methrotrexate is put into his spine to eliminate any possible cancer cells that could be hiding in his spinal fluid. He recently started going in monthly for a nebulizer treatment that will help protect him from pneumonia and he has an eye exam every six weeks to ensure that his spinal fluid pressure hasn’t damaged his optic nerve.
Q. Does he receive any treatments at home?
A. Yes, he takes anywhere from 2-5 different types of pills on any given day, including chemotherapy, steroids, antibiotics, and antacids. We also have to maintain his Broviac catheter to make sure it stays infection-free and he doesn’t develop a clot that closes the line – this requires daily flush of an anti-clotting medication called Heparin and weekly changes of the dressing. We also draw blood through the catheter at least once a month, and sometimes several times in a week.
Q. Can he go to school?
A. Yes, if his ANC is above 500 and he feels well enough to attend. We have a 504 Plan and an IEP in place to accommodate his unique educational needs.
Q. What is ANC?
A. ANC is a measurement of the immune system’s ability to fight infection. It’s basically a count of how infection-fighting white blood cells are present in a blood sample. Healthy individuals (who are not immune-suppressed) typically have an ANC over 1,500 but it’s a good day if Jack’s ANC is between 500 and 1,000.
If Jack’s ANC goes below 500, he is considered “neutropenic” and has virtually no ability to fight illness. He has to be taken off chemotherapy and isolated from people who might pass on a bug. If he develops a fever while the ANC is under 500, he has to be hospitalized and given antibiotics because it’s assumed he’s developed an infection.
Q. How are you guys coping?
A. That depends on the day. Cancer has definitely changed how we live our life and we are constantly on the watch for any issues that could arise with Jack. He misses school often due to treatment appointments or side effects. We are chronically stressed and tired and worried. But we are getting through it somehow. We do have a lot of people cheering Jack on and that helps.
Q. Do you struggle financially?
A. Yes, although it’s not due to the cost of treatment (which is thankfully mostly covered by insurance). Finances are more challenging because we have increased expenses when we have to board our dog during a hospitalization or order take-out multiple times a week or get away for a weekend to avoid burnout, and it’s also very difficult to manage finances when your brain is on overload. I never forgot to pay a bill until cancer came into our lives.
Q. How is Jack doing?
A. For the most part he is doing better than we are mentally. He doesn’t know enough to be aware that this could all end badly, although he does know that cancer is serious. He has tolerated the chemotherapy treatment very well for the most part and has avoided a lot of the issues other kids have with the treatment regimen. You generally can’t tell by looking at him that he is fighting cancer – he has a full head of hair and a cheerful, quirky personality.
He has recently hit a rough patch with his health and we are still trying to navigate that and figure out what is causing it. Our oncology team has been adjusting his medications to try to increase his ANC and running a lot of tests. This is somewhat unusual at this stage in treatment, so it has us all worried.
Q. Do the doctors know if he’s going to be cured?
A. They assume (based on research) that he will be cured because over 90% of children with ALL are cured with this treatment regimen. More specifically, he is a standard-risk patient because he has responded as expected to treatment and has no chromosomal abnormalities, so the chances that he will be cured are between 90-95%.
It’s important to note that “cured” means that there are no signs of the cancer returning for five years after treatment ends; this is referred to as Event-Free Survival (EFS). And while it’s unlikely that he will experience relapse, he has a slightly higher risk of developing other cancers.
Q. Will he have lasting effects?
A. Most likely, yes. Some of his major organs (heart, lungs, liver, kidneys) will probably be negatively impacted long-term by the chemotherapy treatments and Jack will need to be screened annually for the rest of his life because he is now more likely to develop other types of cancer. Kids who are treated with chemotherapy in the spine are particularly at risk for learning disabilities related to memory, processing speed, and multitasking – we’ve already seen these effects in Jack. He may also encounter fertility issues later in life.
Q. What can we do to help?
A. Above all, I urge you to donate money and/or time to finding better treatments for childhood cancer. Childhood cancer only receives 4% of federal funding, even though cancer is the most common non-violent cause of death in children in the United States. That means that 96% of funding relies on charitable organizations and individuals. You can make a huge difference in so many lives by donating to childhood cancer research.
If you are more interested in helping our family specifically, you can check out our Cancer Fighting Wishlist or email me directly at crystal (at) ewokmama [dot] com.
Thanks for taking the time to read this and to follow our story. If you have any additional questions, feel free to ask – it’s highly likely I’ve forgotten something here!