Primus frontman Les Claypool‘s recent auction of a prototype of one of his personal basses wound up selling for $50,599.99 USD. Proceeds from the auction went to Claypool‘s ailing two year old nephew, who suffers from a rare form of infant leukemia.
Claypool thanked fans for their support in the auction while also sharing a letter from the tot’s mother, Aimee. You can read all that below. Meanwhile, donations can be made over at Babymatthew.org.
“Those of you who followed the progress of the auction of one of my main Pachyderm basses on eBay last week for my little nephew who is fighting infant leukemia will, I assume, be equally as surprised as myself to see that the auction ended with a whopping $50,599.00. The amount of interest and support received on this instrument has been incredibly heartwarming, humbling and eye opening. I cannot begin to thank enough everyone who stepped up to bid or to raise the profile of this online event.
Many revelations were had during the progress of this auction. One was that, because of the great expense of Matthew’s treatment, no amount was really going to cover the cost nor was it going to solve the problem. But the event itself, the daily watching of the bids pour in had been an incredibly positive experience and joyful distraction for my Bro and his family who ride the emotional roller coaster of watching their child suffer on a daily basis.
Another revelation has been seeing other families who have children in similar situations gain hope that some profile has been raised to an affliction that few really know about or understand. I’ve noticed myself, as has my Bro, the response many people have when they hear of Matthew; “Leukemia? Well, they have come a long way with childhood leukemia”, is a sentence that my Brother and his family hear often, in fact when I first told my doc about Matthew he said the exact same thing.
These encouraging words, which are meant to comfort, are accurate. Childhood leukemia has a high cure rate; around 70% I’m told. But, what few realize is that “Refractory Infants Leukemia”, which is what Matthew has, at this point has a 100% fatality rate. Many times over the years babies die of this disease and it is thought to be SIDS (Sudden Infant Death Syndrome) because the organs fail before any diagnosis of leukemia can be made.
Matthew was diagnosed at 2 months of age because his blood was tested when he was having trouble fighting a respiratory infection. Babies generally aren’t blood tested at birth, because of the high expense, so often these cases go unnoticed until it is too late and the organs are too severely damaged. (Being that I see folks now a days spending upwards of $1200 on a combo stroller/car seat, it may be a prudent shower gift to have everyone chip in on a “birthday-blood-test” for an impending bundle of joy. If not for anything but giving some peace of mind to those freshly neurotic first parents that many of us will become at some point and time).
Because Refractory Infants Leukemia is so rare and the treatment is cutting edge and very experimental, my brother has likened their situation and the few others they know as being on an island alone dealing with something that nobody really knows too much about and quite frankly, don’t want to know about. I know myself that when the commercials for St. Jude’s Hospital used to come on the TV I had to switch channels. Not because I did not care but because the thought of children suffering, especially when you are a parent trying to dodge the various dangers of life for your own little shavers, is too overwhelming to even think about.
Unfortunately, this affliction is on the rise and something in our environment is triggering it. Back when I was busting tires for a living, we were breathing large amounts of brake dust long after science had come to the conclusion that, “hey, this asbestos stuff isn’t good for folks”. For decades my father and uncles practically bathed in chemicals while working as mechanics that now, by law, are outlawed or need to be handled with protective gloves and garments.
Hell, when I worked at the gas station my boss made us siphon, by mouth and hose, anybody’s tank who was filled, but could not pay for some reason or another. Now you aren’t even supposed to breath gas fumes at the pump! It takes time for society to come around to the notion that these elements are harmful and they actually have to change their lifestyles to curtail any potential adverse affects they may pose.From my brother’s experience at St. Jude’s he has seen that children with leukemia many times come from agricultural areas and some of the pesticides and fungicides used in those regions are thought to be potential villains. But, there is big money in making apples look shiny and smooth. Who wants to buy the wimpy little organic strawberries at near twice the price when you can give your toddler a beautiful giant strawberry that looks like it came out of a Pixar movie? Are there hidden dangers in the growing and consuming of these products? I don’t know, but there are a lot of fingers pointing that way.
It is my thought that we need to define quality of life for ourselves. Do we get the larger TV or do we spend more money on what we put into our bodies? When all is said and done, no matter how fancy our motorcycles or Jet-ski’s are, they aren’t going to do us any good if we are lying on the couch undergoing chemotherapy treatment. I’m digressing a bit here but it seems like every time I turn around someone I know is being diagnosed with cancer. It’s like we are all walking through a minefield and once in awhile you look over to see one of your pals isn’t there anymore. And by no means am I trying to pose myself as the model of awareness and self-fitness.
Who knows what nasty chemicals I worked with back in the day or wretched powder that somehow went up my nose or smoke that went in my lungs that could trigger me to grow a third breast. Maybe it will be that “one hotdog too many” that will take me down. When all is said and done it’s the notion of having this blind faith that “the powers that be” are going to make sure that these things that we have little control over in our environment are going to keep our children and grandchildren safe.
So far it’s a slow process that seems to only be moved or changed by the shifting of the monetary tide. I never had even heard of organic food as a kid and now it is commonplace because people will spend that extra cash to feel secure in the notion that this is one less thing that may trigger something harmful. People will pay more for cars with airbags and stability controls because they are safer; therefore they exist. The market dictates change.
Why does my nephew have Refractory Infants Leukemia? He was the first case that Stanford Medical Center had seen; now there are increasing amounts more, why? Why is there a war on drugs but not a war on cancer? (Be the candidate who is going to cure cancer on your watch and you’ve got my vote!) I ask these questions of other more competent professionals because I chose the path of making music. It is my belief that if enough folks out there ask these types of questions and reflect their concerns in the way they spend their money, the elements of hazard within our environment will wane and we will eventually see the end or at least the curtailing of cancer-based diseases.
Hopefully I haven’t fallen off point too much in this letter, that point being to thank all of you out there who care and continue to show support to Baby Matthew, my brother and his family. Baby Matthew’s progress will hopefully be positive on levels not just for he and those who are close to him but also for the current and future children who can benefit from anything that is learned in the process of trying to keep him healthy and cancer-free.
Humbly,
Les ClaypoolPS. For those who want to learn more, I’m enclosing a letter from Baby Matthew’s Mother Aimee.
Les,
I cannot thank you enough for the amazing amount of support you have given us. We really wouldn’t have made it through all this without your help.This recent bass auction has brought a lot of much needed attention to the infant leukemia world. Most media published about pediatric cancer is only in regards to leukemia’s that have a high cure rate. No one wants to hear about dying babies or treatment that does not work.
Infants leukemia represents a very small portion of pediatric cancers. I tried to find an accurate number for you but since we are such a minority there are not many studies. A doctor from Stanford said that out of every 100 leukemia cases diagnosed only 1 will be infants leukemia. The only numbers I found on the internet said that 2-4% of all childhood leukemia’s diagnosed are infants leukemia. Its also one of the hardest leukemia’s to treat and now that Matthew has relapsed his prognosis is even worse. Refractory infants leukemia (this is now the new term used to describe his disease) has a 100% fatality rate. With that said 2 other babies whom have the same leukemia as Matthew, relapsed, and now have been transplanted using the same transplant as Matthew have gone home to Canada and are doing very well.
The transplant that Matthew got is considered cutting edge technology to fight cancer. The idea was to transplant him with my cells and create whats called a graft vs leukemia effect. This also causes a disease called GVHD which is horrific and life threatening on its own but can be controlled with steroids. GVHD kills all cells and is very effective in killing cancer cells it is caused when my cells come into contact with Matthew’s cells and attack them. Since every part of Matthew is made up of various types of cells every part of him is vulnerable to attack…… his eyes, skin, right now for Matthew it is his GI tract. Of course we do not want to damage other parts of him and when his GVHD gets real bad they will give him steroids to calm it down. The doctors often describe it this way:
The GVHD is a much needed fire but if left to burn for too long can cause too much damage. The steroids are like water to the fire but can also have its negative impacts. Often the doctors are weighing out the lesser of the two evils and pushing his body as far as it will go.
The idea is for Matthew to build a immune response to cancer much like we do with immunizations but on a much higher level. As of recently Matthew had a bad case of GVHD and a blood infection while my donor cells were preoccupied fighting those his .03% leukemia cells were able to gain some ground and multiply. We are kind of in a precarious situation with him. Matthew continues to show 100% donor while cancer continues to live in his body. We are hoping that my cells in Matthew’s body have not become tolerant to his cancer cells and allow them to coexist with his new immune system. That is one of the hard parts about treating his leukemia is that it mutates and tricks his healthy cells into thinking they belong there. We just gave him more of my cells and will see how he responds. If things do not go well we will then have to look at transplanting him with Ron’s cells. This would be really hard on him and would have to be something we would even consider doing. I love St. Judes and their dedication to saving lives but their motto is never give up and sometimes you just have too look at all the treatments harmful effects.
Right now were waiting to take another test on his bone marrow which will be done in 2 weeks. Those results will indicate what happens next.I have spent many hours wondering how and why this happened to Matthew. My very mediocre and humble theory is it has to do with pesticides. Pediatric cancer is believed to be caused by our environment. There are known cancer clusters in California as well as other states. In regards to infants leukemia they believe Matthew began developing cancer in my womb due to his high white blood count and the amount of active disease at diagnosis. Well the only environment he was exposed to was me. As a child we lived in the outskirts of town behind our property was artichoke fields. We spent lots of time playing in the fields a few times while the pesticide plane flew overhead. So why don’t all of my kids have cancer, I believe it has to be the perfect environment and a combination of a few factors that would result in cells mutating. The only thing I did different than with my other children is eat an insane amount of apples. So perhaps with the build up of pesticide and the more I added eating all those apples was just the perfect storm that cancer needed to mutate and become dominant in Matthews developing immune system. In the end we don’t really know but these babies are born with their cancer gene mutating, its like cancer cells in their most primitive form. If we can turn off these cancer mother cells then there is no reason why we couldn’t turn off other weaker cancer cells.
I hope some of this helps explain things.
Thanks,
Aimee”
