Jesse's story....

[Stormymystic]

here is a linkto the story online

When treating my child for head lice, I never thought about the harm I could be bringing him. I thought about the anxiety all mothers feel when they find bugs in their child's hair. I never imagined that I might actually be causing Jesse's death. If I had only known...or even had a clue.

In telling my story, I have decided to remain anonymous because talking about what happened is so difficult. It requires me to confront my demons, and I don't know if I will ever be able to do that. These memories remain vivid nightmares that haunt me through the night. If I think about my role in Jesse's pain and suffering, I'll never make it through the day. I fought so hard to help keep him alive, it's hard to confront the fact that I may have contributed to his death.

The nightmare began in 1984 when my second son had an outbreak of head lice in elementary school. Several children were discovered to have head lice, including my son. Our pediatrician prescribed Kwell shampoo never telling me anything other than the fact that it could cause eye or skin irritation. I used the lindane-based shampoo on my family, sprayed the house, and had it exterminated. I had a refill of the Kwell so I used it twice that first time on all of my children. I did all the shampooing myself. About two months later, I watched Jesse playing "Superman" as he jumped from the couch to the love seat. When he was in mid-air he caught himself in the stomach and appeared to be in a lot of pain. My husband, realizing that I was worried, told me to take him to the emergency room. After being examined the doctors told me that Jesse had an enlarged spleen which I thought had been caused by his accident. The doctors decided to do some blood work and found that his lymphocytes and white blood cell count was irregularly high.

Not knowing the cause, they decided to keep him overnight to do a liver and spleen scan. The next morning they sent us home with some iron drops for an iron deficiency. When the drops didn't bring his hemoglobin up, they scheduled Jesse for a bone marrow biopsy. By that time, I already suspected the worst. I had researched the possible diagnoses and knew his symptoms pointed to leukemia - acute lymphoblastic leukemia. Jesse was hospitalized for six weeks until he went into remission through chemotherapy. I stayed with him the entire time. The doctors asked a lot of questions about our background. Had there been a history of leukemia? Was there chemical exposure? There were no questions about pesticide exposure so I didn't make the connection. It never crossed my mind. Never.

Jesse responded well to chemotherapy. He never looked sick. He was resilient and the entire family pulled for him. Our entire focus was on getting Jesse well. He was only 2 1/2 at the time. Eventually, things got back to normal as Jesse ingested chemotherapy orally once a week for three years. The doctors told us that if he relapsed it would happen within six months after coming off chemotherapy. We were excited to pass the six month and then ninth month marks. We were finally feeling more at ease about his recovery and Jesse's entry into the first grade. Prior to the start of that school year in 1987, I shampooed all of the kids' hair. I am very hygiene conscious. I went to the store and bought NIX over the counter and used it on all of my children -- including Jesse. It was nine months after his remission.

About six-to-eight-weeks after, Jesse's cancer came back. The doctors were shocked because his type of cancer had such a high cure rate and he had passed the nine month mark typically indicating a complete recovery. It boggled everyone's mind.

Because there was no perfect match for a bone marrow transplant, he was put on a new two year protocol for chemotherapy with new drugs. The doctors believed he had a 70% chance of remission. Jesse did well. When he came off the second protocol he was doing well. About six-to-eight-months later I shampooed the kids' hair again for back to school. Six-to-seven weeks later Jesse relapsed again. We took him to a prominent medical facility on the East Coast for a bone marrow transplant. My daughter, who was now 16 months old, was miraculously an identical genetic match. In 1991 we rented an apartment in the East and lived there for long periods of time while the transplants were conducted. Jesse skated through the entire procedure and the doctors felt it went well.

We came home and everyone felt good about things. Jesse had stayed out of school for five months so that his immune system to get back to normal. It was mid-August 1993, and I again shampooed the kids' hair with NIX. We went on vacation for a week and when we returned we took Jesse in for lab work to find that he had relapsed again and this time he was completely full of leukemia. In a "normal relapse" after a bone marrow transplant experts usually find that they missed some of the original chromosomes from the leukemia patient. They resurface, multiply and divide and create leukemia again. Jesse was one of twelve documented cases in the world where the patient had relapsed even though the tainted cells had been completely removed. This was a red flag to me. When I received the news, I panicked that my daughter's marrow was leukemic, but the doctors told me her marrow was perfectly clean. Jesse's relapse indicated that there is something in the environment that may be triggering a transformation.

The week before we went for the lab work, I found two lumps at the back of Jesse's neck. That's when it hit me. Every time I used head lice treatments, Jesse relapsed. I broke into a cold sweat and started to panic. I was eaten up with guilt so I talked to my sister who is a nurse midwife in the area, as well as the doctors at the bone marrow unit. They told me that thousands of children use head lice shampoo each year and that not many get leukemia. But I am close to these people and they know me all too well. Even if they believed my theory, they would never admit it to me because they know it would destroy me.

I went to the library to research in the hope that I could prove that my suspicions were wrong. What I found devastated me. I found an EPA pesticide fact sheet which defined lindane as an isomer of benzene hexachloride. I also found that there was sufficient evidence to support the dangers of exposure to benzene and reports associating leukemia with benzene. That explained the lindane I used, but I also used lice sprays and so much NIX. So, I looked to find a correlation with NIX and lindane and found an issue of Chemical Engineering News which had an article on the phasing out of chlorinated hydrocarbons. It included a specific chart which included a listing of endocrine disrupters. Synthetic pyrethroids such as NIX were included in the chart with different herbicides, fungicides, and pesticides. They were all in the same category in terms of their effects. And the negative effects were many.

I had never heard about the NPA or the concept it teaches. I was born in a time when you freely sprayed a can of RAID or OFF to avoid bugs and mosquitoes. I never considered those chemicals as dangerous. They were just part of everyday life. I never considered it a risk until this nightmare happened to me. I now understand that everything is in balance in your body until something knocks that balance starting a chain reaction. Lindane knocked the balance in Jesse's body. I just didn't have a clue. Why didn't I figure it out before it was too late? Why didn't somebody reach me?

Jesse went in for another transplant and he did very well. Soon after he went into seizures and they never understood why. He even pulled out of that. He was amazing. On the 4th of July he had trouble breathing and we took him to the hospital. The chemotherapy (more poison) had caused his lungs to harden and he had trouble breathing. They gave him oxygen but he wasn't getting better. They did a lung biopsy and found pneumonitis - a hardening of the lung tissue. He ended up on a respirator. When he began moving air in the bottom part of his lungs, they turned down the respirator but his lung tissue was still sore and fragile. As he took his breath his lung tissue tore. Soon after he had a heart attack. His blood pressure dropped. They put in a pacemaker. Finally, his blood pressure was so low that I was told that even if his blood pressure rose, Jesse would never be the same. That was when I knew he was gone. That was when I stopped praying he would live.

Today, the Leukemia Society's brochure states the only two known causes of leukemia are radiation and benzene. People need the facts. If I had done this knowing the facts, that would be a different story. But that isn't the case. I believe the other chemical exposures I subjected Jesse to did similar harm. My husband was also diagnosed with leukemia in 1992. The kind he has takes five-to-ten years to appear. He's been given the same prognosis as Jesse.

Jesse was my soul mate. There has never been, and will never be, another person in my life with whom I connected as I did with him. I go through life like a robot now, existing only for my other children so they will have a Mom, even if her spirit is broken. I will never be the same. I'll never smile again, not inside anyway.
I found this in my email, from I company that I buy products from, this is sad really

[ 10-13-2003, 03:02 PM: Message edited by: Stormymystic ]

[Xen]

This things suck bit time!
Sorry to hear that Stormy!


I wish everybody well and keep your head up! [img]graemlins/thumbsup.gif[/img]

Good luck!


RIP JESSEY!

[Stormymystic]

I think the reason it scares me so much, is I just used the shampoo on my kids twice in the last 2 months, our neighbor kids have lice, and do not treat it properly, so we get it everytime the kids are around, and now, I am terified

[Bungleau]

This one smelled like an urban legend to me, but further analysis found this -- a link from another mythbusting group, breakthechain.org.

Sad. In many, many ways. The death of a child is a hardship. The continued life for one's other children is a blessing. And that doesn't make it any easier.

[Link]

If it is true, it is a truly sad story indeed..

[Faceman]

I also thought it was an urban legend, but www.snopes.com revealed nothing and further research turned up that this in fact may be sad truth. Even if the actual story may be made up the fact that these shampoos are carcinogene seems to be genuine (any chemistry majors here?)
in this case the only thing that one can do personally is to be a little more aware.

[RevRuby]

this was very helpful...my oldest who my mother has custody of goes to a preschool that just had a break out. i fwded it to her. i know it may be hoax, but why take the chances. yeh i was fine getting deliced as a kid, but justice is not me. she has her own body and own balance.

[Stormymystic]

Originally posted by RevRuby: this was very helpful...my oldest who my mother has custody of goes to a preschool that just had a break out. i fwded it to her. i know it may be hoax, but why take the chances. yeh i was fine getting deliced as a kid, but justice is not me. she has her own body and own balance.

my thoughts too, there are some kids that can not toloerate chemicals

[SpiritWarrior]

It is a terribly sad story that. I don't know why they try to manufacture all these lethal chemicals and then bottle them in colourful cans using phrases like "Clean & Simple". There is an alternative treatment to almost everything, using a nautural substance rather than a man-made.