The choices we make

The below post was written in January of 2007 on willlacey.com and highlights the choices we have to make as cancer parents to try and prevent our kids from dying.

In the 1950’s and 1960’s the US government performed about 100 atomic bomb tests in the atmosphere in Nevada. Eventually these tests were moved underground but during those tests the fallout was carried thousands of miles away on the wind.

What would happen at this point is that the fallout would be carried to the ground via rainfall and this radioactive material would land on farms, grass, fruit, water supplies, etc. It turned out that the biggest concern during this time frame was drinking fresh milk.

If you were under the age of 15 between the years of 1951 and 1963, drank fresh milk, and lived anywhere East of Nevada (other than the south) then you have a higher risk of developing Thyroid cancer from exposure to fallout than anyone else. The fallout would rain from the sky, contaminate the grass, the cows would eat it, and then pass it on to you. Since most people washed vegetables, or peeled fruit, most contamination was removed before eating those things.

Although fallout contains many radioactive substances, the biggest area of concern and research revolved around one particular form of radioactive iodine called I-131. This particular radioactive substance when ingested by humans is absorbed by the thyroid gland and people exposed to this, especially during childhood, have a greater likelihood to develop thyroid cancer. It is an uncommon cancer and very treatable (95% cure rate) and the risk of having developed it from this fallout exposure is very small.

Why am I talking about nuclear fallout?

I keep saying “MIBG therapy” or “MIBG treatment” and I wanted to expand on exactly what he received for treatment.

My son Will received an infusion of I-131 MIBG, a similar thing that he is given for his scans in Boston, except that this time the dose of I-131 is exponentially higher than what he would get for a scan.

I-131 MIBG is a radiopharmaceutical that takes a radioactive substance (I-131) and they then attach Meta-Iodobenzylguanidine (MIBG) to this radioactive substance. This is done because neuroblastoma -Will’s cancer – absorbs MIBG when it enters his body.

Therefore, instead of firing beams of radiation at Will, they found a substance (MIBG) that his cancer likes to absorb and they then attach that substance to radiation (I-131) and put it into his bloodstream.

The MIBG delivers the radiation directly to all of Will’s body so that when it finds cancer it works right at the source.

We are not just saying “we see cancer at points A, B, and C so lets zap those areas with radiation”. This treatment allows MIBG to find cancer anywhere in the body or marrow that may not even be seen on a CT scan at this point and delivers treatment to that area.

That is my biggest concern – where are there cancer cells hiding and just starting to grow that can not yet be seen?

MIBG tries  to solve this problem (assuming that his tumor responds to radiation).

The biggest problem, as I mentioned above in relation to fallout, is the fact that your thyroid absorbs I-131. Therefore, we are giving Will medicine to prevent this from happening. Actually, it isn’t really medicine it is just iodine drops. By giving Will iodine drops on a set schedule we have managed to keep his thyroid full of our iodine drops so that there is no room left for his thyroid to absorb the radioactive isotope. (Everyone living near Chernobyl received these drops)

We have been giving Will this drop every four hours for about a week now and it drops off to once a day tomorrow and stays that way for 5-6 more weeks.

Like all radiation, the biggest side effect to worry about is that he develops a secondary cancer from the radiation exposure.  Thyroid damage aside – leukemia is also a very large concern.

However, Will has a cancerous tumor in his body that wants to grow unchecked. We had surgery performed to remove it and then gave his body systemic poisonous treatment in the hope of killing this cancer via 19 rounds of chemotherapy. In addition to hopefully killing the cancer, which didn’t’ work, we were literally poisoning our son’s entire body and were told that he was incurable.  Since that poison didn’t work, we have just finished getting the equivalent of nuclear fallout poured into our sons body in a more direct attempt to only kill the cancer itself. Hopefully this will work and Will is not going to develop secondary cancer from this.

The hope here is that somehow I-131 kills his tumor and that we can magically cure my son of cancer. As I have recounted on numerous occasions it is statistically unlikely and we are told that if you get Neuroblastoma and it comes back or never goes away, you are not going to make it. You may have a few remissions but at the end of the day there is no established cure for relapse.

Am I hopeful that Will is somehow going to beat the odds?

Surprisingly, I am very hopeful in spite of the zero percent success rate quoted by most experts.

However, if we mange to kill Will’s cancer and he survives Neuroblastoma there are going to be extraordinary lifelong issues to deal with from all of the poison and radiation we have chosen to put in his body.  The current accepted treatment for cancer is barbaric. When I think of this treatment and where I think cancer treatment is going I can only imagine what future generations will think of when looking at what we put our kids through.

I think of a picture from the civil war of a farmhouse outside of a battlefield that was converted into an impromptu triage area. Outside of one window was a giant pile of amputated arms, and outside the other a pile of legs.

The grotesque horror of this picture and the haunting thought of what it must have been like inside of that house have always stuck with me. I imagine that shock I feel in looking at medicine from 140 years ago will be similar to how people will feel when they look back at this era of pediatric cancer treatment.