This Easter was quite different, we were far more relaxed as Cameron and James dashed around the back yard hunting for their eggs. What a joy to have a normal occasion, without worrying about Cameron damaging his central line or scraping his knee and needing to go to the ER because of a low platelet count - they were just two normal, happy little boys, doing exactly what they should have been doing on Easter.
Since Cameron's scans, we have really enjoyed the time away from the hospital, being a normal family. We have definitely started to relax slightly and let the boys enjoy as many experiences as possible, without the constant worry of germs and injury. Of course, at the back of our minds, we are still always worried that this dreaded cancer will rear it's ugly head once more, we are very aware (borderline paranoid) about any aches and pains that Cameron complains of. Is he sleeping too much / enough? Is he tiring too quickly? Is he eating enough? Where did that bruise come from? Sometimes I feel like I am becoming one of those "helicopter parents" that I swore I would never become!
It is because of our ongoing paranoia, that when Cameron started complaining of headaches about a month ago, we went into panic mode! Has his cancer returned? Is it in his brain now? I know it sounds silly, but I think we are so worried that we will miss a sign of the cancer's return, that we are extra vigilant. So, we decided to request a urine test for HMA/VMA Catecholamines. The urine levels came back slightly elevated! COMPLETE PANIC! To put it in perspective, normal Catecholamine urine levels are 13.5 or lower. At diagnosis, Cameron's were over 300, the latest test came back at 19.7. Obviously, it's not a HUGE jump from the normal range, but the fact that it was increasing slowly with every urine test (it went from 13.5 to 16.1 to 19.7), gave us all slight cause for concern. The main problem with this type of urine test is that there are many dietary factors that can influence the result and give a false positive. We decided to take Cameron off of his formula supplement again and switch him to organic whole milk, and we followed the suggested dietary limitations as closely as possible, and then retested him after two weeks - the result? A one point drop to 18.7! Well, that doesn't exactly make me feel relaxed! The doctors, however, did not seem concerned and said that they would retest him again in four weeks, as originally scheduled.
When we got to the end of Cameron's treatment, we discovered that there are not many long term treatment options to prevent relapse. Since Cameron had had a good response to the chemotherapy, radiation and antibody therapy, there wasn't much left to do except continue to monitor him closely for the next two years. I wasn't entirely happy with the idea of sitting around and waiting for scans every three months and just letting things be. I had read about a study that was being conducted in Michigan that was looking into a drug that may help prevent relapse in Neuroblastoma patients. The elevated urine levels led us to revisit all options. Frank and I took a closer look at the new trial. The study requires patients to be no more than 120 days out of treatment, so we had very limited time to make a decision. We did as much research as we could and spoke to the doctor conducting the study as well as the parents of children already enrolled in the study. The drug has already been proven successful in preventing relapse in adult colon cancer patients and has minimal side effects, he would not be exposed to any more scans than he would if he wasn't on the study (the study requires him to have scans every three months, but results can be shared with his primary oncologist), he would take 2 pills twice a day and limit certain foods. We can remove Cameron from the study at any point. We have decided to go for it, given the potential benefits and the abscence of any severe or permanent side effects.
Luckily, a hospital in Charlotte, North Carolina is participating in the study, we are only about 4 hours drive away, so it makes more sense to go there than travel to Michigan every few months. Tomorrow, the boys and I will head up there to meet with the doctor and over the next few days Cameron will have scans done to make sure that he is eligible to participate in the study (he will need to be cancer free). I am also relieved that he will have scans this week, with his urine not being perfect at the last test, it would be reassuring to know where we stand.
I am a bit nervous about driving there on my own with both children, but I am sure that once we get there, we will be fine and even try to include some fun activities in between our hospital visits. A friend, whose son also has Neuroblastoma, will be travelling up to North Carolina this week too, also to enrol in the study. It will be great to have company, and since our children are all the same age, it should be fun for them too - poor North Carolina isn't going to know what hit it!
