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I'm so glad you opened this up for discussion!
I worry myself sick over this. Emma is my only child. I failed at breastfeeding, smoked before I knew I was pregnant, got many ultrasounds, nuked her bottles, the list goes on and on and on. I have to remind myself constantly that there are kids out there licking lead paint off their cribs and THEY don't get leukemia. Why Emma? And why doesn't it happen to all the children who live in households similar to mine?
My friend emailed me a while back regarding nitrites. I ate bacon or sausage for breakfast EVERY morning during the second and third trimsester (I ended up gaining 55 lbs, but it was worth it! LOL). I freaked out and thought, well that's it! That's how it happened. But then I researched and there is no proven link. So I was back where I started.
To be honest, I don't want to know how it happened if it was something I did. The guilt would kill me.
I think this is a fair and very common concern for all of us.
I do believe though that if they knew, we wouldn't be here right now. It is something that happens and one thing I was always told by our team is that they basically ruled out one specific cause and believe it is a mixture of causes that unfortunately all happen at the same time to create this very rare occurrence.
They do believe some may be genetics, some lifestyle and some viral. It is something that has happened to one specific cell and for some reason, an immune system that didn't pick up the mistake and thus cancer developed.
I think they do know now that many, many babies are born with leukemic cells in their marrow, but they eventually die off and never turn into anything. For some though, that doesn't happen - why? We are not sure. I do belong to a blood cancer research forum that I find extremely helpful. Almost daily they post news articles about advances being made in treatment of blood diseases and many on leukemia. The main concern is yes this happens, but when it does, why do 85-90/100 kids get cured and 10-15/100 don't. Many of those articles are very interesting and even though a lot is over my head, I get the jist of it and strongly believe they are on to something. I did read once that there were twin baby boys and one developed leukemia. They did test the other twin that had no symptoms and found a small amount of leukemia cells in his marrow. They waited a bit and retested him; and when they did, those cells were gone and they continue to be gone.
My son had many ultrasounds, but so did others that we know, and they didn't get leukemia. My son slept on the same plastic crib mattress as our daugther and she's fine. I do know that many kids are diagnosed in the heart of cold and flu season which almost brings the theory of viruses to some truth. Some docs believe that the leukemic cells are sitting dormant and then a viral hit will set it off into action. Someone on this board posted before that it is interesting to know that we all develop cancer cells, probably on a daily basis, but our immune systems recognize them and fight them off. For people that develop cancer, why isn't this happening? I think that is one thing that researching are trying desperately to figure out.
Recently on that site that I frequent, it did mention that they are looking at a link of leukemia starting from a viral infection - very interesting.
Anyway, I hope this helps a bit. Believe me, its been on my mind now for three years. I've just learned to think positive and hope and pray for the best always.
Everyone is correct, I do understand that at this point there is nothing that we can do, it's happened , it's done, it's here. I am a very logical and sensible person that really know how to separate the important from the crap, - usually, in fact always, except when it came to this bump in our lives. It does not matter how much I try not to think about it , it always comes back, sort of a haunting of unfinished business. I definately agree that all of our energies are better spent on things that we can effect and that pondering about the why's and how's is pointless, I just had to get it off of my chest to people who know and have been through this. People close to us simply CANNOT relate, therefore I keep most thoughts to myself. Doctors and nurses are trained to treat and not question - too many patients, not enough time.........\huge amounts of research all over the world, yet every lab seems to be looking for its own little needle in a haystack...........
I think that there may be something to the viral theory of leukemia, as there are higher rates reported during the flu and cold season (google Greaves (can't remember under which folder I put that one)) And yes, there are babies born with leukemia, and the mother's are fine (weird, eh??) (www.jaymun.com - an extraordinary story, for those who have time to read this lengthy journal - a truly inspiring story of a father's refusal to give up) And yes, there could easily be something to all the pesticides that are sprayed around our kids...but just as some people get hayfever and some of us don't, maybe all these little factors bother some kids and not the majority of others. Yet, leukemia rates have risen by one per cent every year for the last thirty years...why???...can this be reversed??? Let's hope!
Though I would love for you to write back which website it is that you frequent, as it sounds very interesting and I am still up for some more tortureous research and questions... I think that it's a control freak thing as it is the only thing that I can do just to feel ever so slightly more empowered than doing absolutely nothing (I drive my husband nuts over the amount of time I sit on my laptop, with only dial up service, which of course takes forever - so I iron while things load up, hahaha , multi tasking)
In the mean time, yes, I will continue to distract myself and hope for the best...don't want to fall victim to the law of attractions either.......
I too have spent many moments wondering why. Is it something I did when I was pregnant? Environmental factors? Genetically modified foods? Living too close to a power line? We live in the country and all of our neighbors use pesticides - could it be that? As far as I know Alex hasn't been exposed to any more or less than my other kids. The sh***y fact of it is that we can't protect our kids from everything. I think that when doctors don't know the answer they tend to try to avoid the subject. The thing of it is is that no one knows. For sure our environment, foods and such are factors. I think that I finally came to the realization that there is no way - in todays technology - that I will ever know exactly what caused Alex to have leukemia. The human body is still a mystery - perhaps it was never meant to be figured out completely. Almost every day in the news they find another cause of some sort of cancer.
I am not meaning to sound like I am saying "oh well or there isn't anything I can do about it" nor am I saying that people shouldn't try to figure it out
but quite frankly the the reason WHY robs me of my energy that is better spent elsewhere. Like trying to figure out how to keep my organic garden from being sprayed by the neighbors crop dusters this summer or trying to make changes in our eating habits or..... The list goes on and on.
Sure thing:
http://http://blood-related.org/community/index.php?board=2.0
If it doesn't work - let me know!
The huge spike in the incidence of leukemia around age three might be the result of genetic (cytogenic) issues. But I tend to like the 'perfect story' theory, where the body just once misses killing the random cancer cells that it would normally clear out. Once they reach a certain threshold, the body just can't get them all.
My son, 16 at diagnosis, was tested on Friday after four days of a bad flu. For my part, I wonder if the flu could have made him unable to clear out the cancer cells. Could it have happened that fast?
In our case our daughter was 12 when dx, so I don't worry too much over what I did while pregnant. I do know that I was much more health conscious during my pregnancy with her than I was with my son, who is 31 and doing just fine 
I have seen many children that are dx after being very healthy, which was true in my daughter's case as well. Except a nasty round of ear infections between her 1st and 2nd birthdays she was incredibly healthy. No other children in our neighborhood (and few adults) in our neighborhood have been dx w/cancer. We never used poisons or toxic cleaners, I breast fed and we eat organic, for the most part.
At the risk of sounding like a complete fruitcake, (and some of the 'oldies' here know this story) her problems seemed to stem from a serious dog bite she got when she was 9. She was bitten in the lower back by a pit bull and the dog's tooth went into the back of her hip bone right to (and into) the marrow. Within 6 months she was dx'd with idiopathic hypereosinophilia, a very rare condition where the body's eosinophils go nuts and start attacking the body. Her white cells were 40% eos, symptoms were high fevers, severe joint and bone pain that moved around-sound familiar? The docs did a bma to rule out leukemia before they started treating her with high dose steroids, gleevec and interferon alpha. These drugs were never entirely successful in controlling her condition. About a (very long!) year and a half later she was dx'd with pre-b ALL. Interestingly enough, the chemo took care of both the ALL and the hypereos. so we were doubly blessed/lucky.
I realize that this is an extreme and very weird case, and I have no idea if it helps anyone, but I thought I'd put it out here anyway. If nothing else, it shows that every child's case is unique!
Patty mom to Sarah, dx 1/04 hr ALL, OT 8/06 and doing great!
Hello!
Thanks mom. I thought we were busy with 5
Here's my technical take on this emotional topic.
So I think the topic of Epigenetics has a bearing on childhood cancer.
And the fact that you can pass on an environment conducive to mutations without being the origin of the mutation. Theoretically the parents or the grandparents could be the origin of the "presentation" of the genes without actually passing on mutated genes.
Epigenetics deals with the presentation of genes - which structure is "heritable" from generation to generation even IF there are no mutations. That means toxicity from an earlier exposure can "degrade" the epigenetic status - resulting in a "signaling environment" that is conducive to the survival of mutations. Mutations that can themselves direct further epigenetic "modifications" to support their own survival (a downward spiral of malignancy).
So the maligancy of cancer is directly related to supporting genetic AND epigenetic problems.
For example - mutations could normally be trying to shut down the cells (apoptosis) but because of epigenetic issues, the cells refuse to listen.
Also - mutations could be driving growth - but because of epigenetic issues, the cells refuse to differentiate.
The key word relating to this topic, I think, is "heritable". Heritable from earlier to later life. And also theoretically heritable from parents to children. In other words even if teenage smokers avoided cancer, they could still pass on poor epigenetic structure to their children ...that would increase the risk of mutations surviving and becoming malignant.
Could that mean cancer risk would grow over multiple generations of poor diet / toxic environment? I think so.
The good news is, that with epigenetic therapy (things like Green Tea, Curcumin, etc.) the cellular signaling environment that supported the genetic mutations can be adjusted, supporting normal apoptosis and/or differentation, and also sensitising the cells to chemo, radiation, and/or immunology.
See studies:
http://www.ncbi.nlm.nih.gov/pubmed/16563357
http://www.ncbi.nlm.nih.gov/pubmed/17570133
http://www.ncbi.nlm.nih.gov/pubmed/18199978
Sorry to jump in with a lecture ...couldn't help myself
(the "man" thing you know)
In the end - you deal with the genetic (or epigenetic) structure you are born with. But there are common sense dietary things you can do to guard against cancer. And that's not some wacko-health-salesman saying that. See study above. That's M.D. Anderson.
...Dave
My son has Down syndrome and kids with DS are 10 to 20 times more likely to develop leukemia (but less likely to develop solid tumors). To me this says there is definitely a genetic component. I have come to the conclusion (after very limited research!!!) that some children are genetically predisposed to leukemia, either through obvious genetice differences like Down syndrome or a less obvious genetic hiccup, that is triggered by a virus or some other environmental factor. In my son's case he was sick with a virus about four months before diagnosis. He continued to be sick with various things for that four months and when I asked the onc at diagnosis how long he thought my son had had leukemia he said about four months. We all had the same virus and my youngest was sick enough that he was hospitalized, but only my son with Down syndrome developed leukemia.
I wonder if it would be possible when relapse (or first diagnosis) corresponds to an illness
...that your immune system was already (successfully) keeping the cancer at bay until it got overloaded by the illness, and consequently the tumor load became too great for the immune system to handle.
It's very interesting that many people report that their children were ill before diagnosis. Now, were they ill as a result of having bad blood counts due to the leukemia already being present, or, was the leukemia a manifestation of another attack on the immune systeml????? (chicken or the egg question). It is funny that you had your children all sick at the same time, because I had three of mine sick from a stomach flu at the same time, in fact , my son with the leukemia developed the stomach flu within twenty minutes of my older one in the middle of march of 2007. Everyone recovered fast, though matthew lingered an extra two days with the vomitting. It was not even three weeks later that he developed the swollen glands which eventually led to the leukemia diagnosis. A viral connection??I don't know. An over reaction to a virus, who knows...but he was never ever sick before that, not even a fever , ever.
Mr. Laat, you have expressed in your previous post what I don't have the articulation to do, and I believe greatly in epigenetics. You summarized the essence beautifully. And yes, there is a lot to be said for being able to change the course of potential disease, i.e., green tea, curcumin, resveratol, etc., More research is being also done for IP6 and MGN-3 along the same lines as feverfew , but for different types of blood cancers and other cancers as well. It will be interesting to see whether or not these ever become part of larger studies. Nonetheless , it all makes for interesting and intriguing reading for all those nights that we can't sleep............they will most likely find one day that we are not looking for a key but for various pieces of an enormous puzzle............
My son was not ill at the time of diagnosis, but did present with his symptoms 10 days post his MMR (live) vaccine. Obviously, that is three major viral illnesses being placed on their bodies at once with a lot of work for the immune system to handle. Although the docs don't agree, I can't seem to get that out of my mind. I don't think the MMR vax caused it and I'll stress that over and over again, but I do believe there were dormant leukemic cells in the marrow and with his immune system fighting off the MMR, it gave the leukemic cells a chance to mulitiply. My opinion, but makes sense!
Also, when you mentioned that your child was never sick before, I hear that quite often and that may mean an immature immune system. I kept my son very protective from germs in his 13 months before diagnosis and this may have something to do with the fact that his immune system was so immature that it couldn't handle both the MMR and the leukemic cells at the same time. There was a study done that does indicate that kids exposed to more germs from birth on have a less likely chance of developing leukemia (don't know how true that is), and they base that on the fact that their immune systems become more "mature" and are able to handle more things....food for thought!
Sure. Our son Jaymun's relapse last year came shortly after his vaccinations, several ear infections, and bronchitis.
So I think his immune system was overburdened.
Also there are studies that show breastfed infants are at less risk for leukemia ...and it's common knowledge that breastfed infants have a boosted immune system. A good part of that is the enhanced intestinal flora (a good part of your immune system is symbiotic with healthy intestinal flora).
.As mentioned before, every child's "hit" is different. Since my son was not vaccinated, I can definitely say no vaccine caused his illness . Yet as Mr. Laat explained previously regarding epigenetics, maybe it was my own vaccination 45 years ago, or my parents' that changed something in me that became unstable in my son in combination with various environmental factors that may not have existed long before . Since he was breastfed for two years and still became ill, I will never say it was supposed to prevent it no more than to use faulty science to conclude that breastfeeding causes leukemia or that bottle feeding does. [ Though , not to get into the nursing/bottle arguments, breastfeeding has to be better than formula (read the ingredients, genetically modified corn products, poorly raised dairy, and all the other synthetic vitamins...I liken it to fast food compared to home cooking (please , no offence to anyone, this is just fact)].
In the early 60's there was not a hospital around that was not trying to convince mothers to use formula instead of nursing, it was just the thing to do and people did it unquestioningly, because they all believed that doctors could never be wrong, back then. We are now more likely to question the medical community on various issues rather than to simply take their word for everything, especially where there may be more behind a lot of the things that are promoted and taught that have any hint of a dollar sign behind it. Ughh, that is now a totally other forum.........
As far as children who don't get sick having less than optimally functioning immune system, there could be something there, just what. My son was exposed to two years of day care and six other siblings coming home with God knows what every day. Though I may have been somewhat of a clean freak (A-type), I was not anymore careful with him than any other average parent. My question is that if someone has a faulty immune system, would they not get sick more often, (as we can see from our own kids when their counts are low)? I mean, how do you not get sick with a bad immune system? Therefore, our immune systems must be very complicated, working on various levels at different moments, having to be in total synchronicity at all times. We are such complicated machines and it does not take much to set us off, whether we are aware of it happening or not. (Remember how much a little sliver may bother?)
Speaking of vaccinations,.....has anyone had their child vaccinated while on treatment or maintenance? I was always under the impression that vaccines are made useless because of the chemo during the initial treatments, i.e., it wipes out previous innoculations, so I can't imagine why someone undergoing intensive chemo would receive one (re Laat story). Anyone opting out, or considering it? Just interested, as no one at the hospital has mentioned anything to me...and I really don't want to trigger any conversations with them at the moment regarding this.
I drive myself batty with this even though every doctor you come in contact with assures you it is not your fault and a cause is unkown. My daughter was sick at the time of diagnosis with an upper respiratory and ear infection. She never seemed to get over either infection and then became very pale and didn't play a lot. I took her back to the doctor to see if the infections weren't responding to medicine and the next thing I remember is a phone call telling us to go straight to the hospital. Her labs were very wrong.
I read somewhere (and I can't remember where now - information overload) that developed countries seem to have a higher rate of leukemia. This line of thinking seemed to believe that with less of an exposure to germs, the less your immune systems kicks in, which makes it weaker actually. I wondered about this because my daughter has been on prophylactic antibiotics for most of her 3 1/2 years due to high grade bladder reflux on both sides of her bladder. Of course that makes me wonder about the regular VCUG's she has had to watch the reflux and what the radiation could have down. She had her first x-ray at 3 months. Ah, the things your mind comes up with at three in the morning, huh? 
I beg to differ with the breastfeeding comment as I know many, many moms that breastfed their babies and did so for a long time and their child still developed leukemia. Ninety-five percent of the immunities your baby will get from you, they get in-vitro. The five percent more that breastfeeding provides I don't think makes much of a difference. I can go on and on about this - but I won't as I don't want to argue with anyone. All I know is that every thing they say are "benefits" to breastfeeding have been disproven by people I know personally.....I really think your child has to build up their own immune system by getting bugs and fighting them off on their own. Some of our kids just had trouble doing that.
Most pediatric hospitals will strongly recommend breastfeeding. While we were down at Children's Hospital, there were posters, signs, and pamphlets about the science behind it.
I did a bit of googling back in the day... and collected some links myself on the benefits of breastfeeding.
http://www.jaymun.com/medical/breast-milk.shtml
I'm not trying to start an argument either
but there is nothing wrong with discussing the pro's and cons (grin)
And I would probably defer to this study:
http://jnci.oxfordjournals.org/cgi/content/abstract/91/20/1765
They studied over 2500 children and came up with about a 21% reduction in acute leukemia risk.
To be fair, of course, that doesn't mean that 21% of childhood leukemia cases come from bottle-feeding
...but the risk is somewhat quantified by that study.
...Dave
And I would probably defer to this study:
http://jnci.oxfordjournals.org/cgi/content/abstract/91/20/1765
They studied over 2500 children and came up with about a 21% reduction in acute leukemia risk.
The biggest problem I have with that study is the self-selection issue. From the study itself:
"The inverse association in our study, therefore, could have resulted from differential misclassification if mothers of control subjects over-reported breastfeeding their offspring..."
What does this mean?
Well, if we take as a general average that there are about 4 cases of ALL in children below 15 per 100,000 children ( http://www.medindia.net/patients/PatientInfo/Acute-Lymphoblastic-Leukemia-Incidence.htm ) , then the statistics from this study would suggest that the chances are 21% higher in non-breast-fed children, or 21% lower in breast-fed children.
That would mean that perhaps there were 5 cases per 100,000 in non-breast-fed children. That would be a 25% increase in risk. You see how, when the risks are this small, even slight variations could throw off their statistical analysis.
Now, on to the primary issue with this study -- that of self-selection and self-reporting. They were interviewing people by phone. I suspect that there was some segment of the population wants to be seen as having done everything for their child.
I believe (and it is just my belief) that the leukemia parents in this study would be very cognizant of the necessity of being very very accurate in reporting all of the things they were being questioned on, in order to produce a statistically valid survey. That's just my own common sense, from being a leukemia parent.
On the other hand, the "control subjects" in this study? They were selected from "random digit dialing" -- according to the article itself.
So, the question is, would parents or mothers contacted completely randomly who did not have a leukemia child and did not appreciate the importance of the information in this study be "somewhat" more inclined to claim to an unknown interviewer that their child had been breast-fed (than would the parent of a leukemia patient participating in the study, who obviously understands the importance of valid and accurate medical research)?
Sorry, but I have to answer this question "Yes" -- I think the random control subjects would be more likely to (falsely) claim that their child had been breast-fed than would the parents of leukemia patients. These random control subjects don't know the importance of this medical research, they have not had to go through what we have all had to go through with our kids, and I believe that a certain percentage of them will want to appear (even to an unknown telephone interviewer) as being a "good parent" -- enough to make the minor statistical difference that this study is claiming to have detected.
I'll need more evidence than this type of survey before I will believe these kinds of causation links. (And our son was primarily breast-fed, for whatever good it did.)
I have other thoughts on the general issue of spending time on trying to figure out what caused our children's leukemia, which I will post in a while.
I guess breastfeeding is just another issue that's up for debate....I'm not going to go there though - I'll let it go....but I still feel the leukemia has to do mainly with an immune system error - it only takes one error at one time to get it all started...then when it does, it just depends on what that error was to determine the agressiveness of the leukemia. Most times, for Pre-B ALL, the error can be corrected by chemotherapy alone - for others, it may take harsher chemo, radiation, BMT and of course a combo of them all. There are still about 20% of children that they can't identify why the cells don't respond to treatment and that is why we need the research. Hopefully one day they'll get to the root of it so all kids can be cured.
Reese was diagnosed with a very rare form of Hodgkin's Lymphoma at age 5 (a very young age for Hodgkin's) and then was also diagnosed with type-1 diabetes (an autoimmune disease) 7 months later. Talk about wondering what happened and why! I give up, I know his doctors have no idea if the two events are even related, and they have no firm understanding of what causes either disease. I accept that I will probably never know the causes. I just try to read up on the latest research so we know how best to manage the cards we have been dealt.
Regarding immunizations, once the kids are done treatment, about 6 months later they will run a titer to see if any prior immunizations were able to survive all the chemo. If so, then revaccination isn't necessary. If the child has lost their immunities, then appointments will be made to get revaccinated. I strongly believe in vaccinations as getting the acutal measles, mumps or rubella viruses would be FAR worse on them (even fatal) so I do believe in them. Also, with everyone being vaccinated, you are virtually wiping out the viruses - just like polio is virtually gone.
As for the immune systems being "faulty" - I wouldn't say faulty, I'd say immature. I believe the stronger the immune system, the better and the way to get it stronger is from being exposed to "bugs" and then fighting them off. I was sort of a fantatic about keeping my son away from any germ possible - my mistake? Maybe so. I think that if he was exposed to more germs before he was diagnosed, his immune system may have been stronger and able to create the antibodies to the MMR Vax and kill the leukemic cells at the same time.
As for breastfeeding, again, there is research out there too that intake of folic acid during pregnancy will lower your child's risk of developing cancer. There's the one I mentioned about your child going daycare to lower the risk, etc, etc. Yadda, yadda, yadda. I took the required dose of folic acid supplements throughout my pregnancy as well as ate extremely healthy with my son that was diagnosed. With my daughter, she was not breastfed, I ate junk food all the time throughout my pregnancy as it curbed my morning sickness and her, being 8 years old is EXTREMELY healthy and has always been healthy and a very strong immune system. Go figure! You just never know.
Will ever know the answer? I hope so one day.
My son was one of three of our 6 born at home. He breastfed longer than any of our daughters. I have always had a running theory that immune systems--like muscles--need to be 'exercised' to be healthy; therefore all my kids have been exposed to a healthy amount of garden-variety dirt (it's not like I went out and brought the plague home or anything). We don't smoke, nor do many people around us. When he was diagnosed, they told us the beginning may have been as much as 12-18 months ago, and I certainly can't recall any particular virus he was dealing with at that time. All I know is the only thing that is different with him from my other kids is that he is our only boy. There is a family in our high school whose son had ALL as a toddler, and their teenage daughter is now dealing with lymphoma--now that family should be studied! (Or maybe someone should study the Duggars who have 18 kids without-apparently- any of them suffering any major childhood ailment. No leukemia or autism there!) Anyway, we think we are doing the best for our kids, and crap happens. On a certain level, it IS fascinating to delve into the origins of this disease and I am curious as to all the theories, but it just makes me glad that there are people smarter than I who are studying the daylights out of it!
Sam was diagnosed with pre-B ALL in January of 2004, and has been OT (off treatment) for almost 2 years now.
I guess my primary advice is for those who are wracking their brains trying to figure out why their child got leukemia, or (even worse) driving themselves crazy with guilt, thinking they did something which caused their child to get leukemia.
For your own sake, I urge those of you worrying about his to stop focusing and fixating on this. YOU DID NOT CAUSE YOUR CHILD TO GET LEUKEMIA. (repeat that as many times as is necessary to make it clear, and then move on to the important focus of getting your child through the horrible treatments our kids have to endure.)
There are many MANY doctors and scientists who have been working on this for decades, and they have still not figured out the causative factors which are responsible for leukemia. It is entirely possible that it is primarily just random. As the CHOP doctors explained it, the first leukemic cell does not develop unless a cell mutates with 3 specific mutations. If it develops with any two of those mutations, nothing happens in the body. All three at the same time, and you get leukemia. Your body creates random mutated cells all the time, but the body gets rid of the vast vast majority of them, in the vast vast majority of kids.
So, people should not waste their time beating themselves up, wracking their brains trying to figure out what is was that THEY did which caused their child's leukemia. It is simply a waste of your time and energy, and will only make you more and more worried.
Why did one of our kids get leukemia, and not the others? If you are like most families, including mine, your kids had virtually the same experience, in terms of where they lived, what environmental factors they were exposed to, their genetic make-up (same parents), the food they ate, the air they breathed, the house they lived in, etc, etc., etc. Including what germs and diseases they were exposed to. I know our son and daughter got the same colds, viruses, etc. And yet most of your other kids did not get leukemia. (We have had one parent on here that I recall who had two kids with leukemia -- which would happen statistically in about one of every 3000 families with multiple kids and at least one child with leukemia).
I have read dozens, or probably hundreds of medical journal articles since 2004, and have no confidence that there is any particular factor which is responsible for the leukemia which appeared in any of our kids. And there are hundreds of oncologists and scientists out there studying these issues.
Most especially, give yourself a break. Don't heap guilt upon yourself as if there was something you might have done which would have avoided your child getting leukemia. Move on. Don't go there. It's not healthy, and is completely counter-productive. Work on improving your child's life as they get through this, and your family's life as well.
Let the doctors and scientists work on these questions. Participate in studies if they ask you to. But we all only have a limited amount of time, so use yours productively with your family, rather than losing sleep and worrying about these issues.
I can truly say that, after speaking with our doctors very early on about this subject, and doing some research on the subject, we resolved that we were not going to waste time thinking, worrying, dwelling, fixating on this issue. And we did not. And, I believe, it helped us tremendously in getting through our years of treatment. I highly recommend it to all.
Good luck.
Doug
Very well said.
Thank you!
...Dave
PS The only reason I bring up epigenetics is not to affix blame, but to give hope for those who want to use every precaution to prevent relapse, and add extra weapons to our arsenal against this disease.
yep- It's fun to toss around for a minute, wonder about it, then go on with life. From time to time, I wonder a bit.. but then reality hits and who the hell has time for ruminating on something that will not be solved. My son was breast fed the longest of my kids- 15 mo. I doubt that had any contributing factor in keeping Leukemia at bay or bringing it on. That being said, if I could have started nursing him again at the age of 3 yrs 11mo when he was diagnosed, I would have in a heartbeat. We had normal germiness. I too fear "superbugs" bred from over zealous sanitization. Now I own a minimum of one pkt of Clorox type wipes for each room in the house and hand sanitizer beside it. No sickness, no exposure to anything on the "bad" list, nothing different than our first two. I can think of one thing- my husband finally learned how to hold on to our kids and didn't drop him like the other two. Perhaps a bounce about the house could have prevented all of this!
There is one comment that keeps appearing that I find interesting on two levels. Our clinics, in general, have minimal interest in this topic. It is a bit frustrating, because it would be nice to be at the bottom of this someday. On the other hand- they have it right, the important thing now is to get rid of it!
Heather
This is an issue that is very near and dear to my heart.
After the birth of my first two children and following some of my first son's health issues and evident neurosensitivity we became increasingly aware of enviornmental toxins and carcinogens and began removing them from our lives. I'd always firmly believed in the benefits of exclusive and extended breastfeeding and cloth diapers and the like. (Even elimination communication which we practiced with my cancer bub). We were even more conscientious about these things and removed virtually all toxins from our lives prior to my son's conception and throughout his pregnancy and infancy. We also are a delayed/selective vaccination family and I can state that the degree of the removal of toxins from our family went so far as to exclude toilet paper from our home and alter our diets drastically.
Virtually all of our home life was focused on the prevention of cancer, the pursuit of optimum health and the reduction of our impact on the environment. We're also huge believers in the preservation of the virgin gut in infants and we strive for healthy gut flora as adults.
Needless to say, I was absolutely floored when my son was diagnosed with T-Cell ALL. (Although we did learn of a black mold infestation in our building with known carcinogenic strains and we can't help but think that this may have contributed to our son's cancer.)
The way I look at it is that I gave him the absolute best start imaginable, but because his immune system was still immature it was unable to recognize or deal in an efficient manner with the leukemic cells that his body produced. Virtually every single person's marrow when examined yields some leukemic cells. It's simply a matter of whether or not our immune system recognizes these anomalies and deals with them accordingly or whether or not they're allowed to fluorish and multiply unchecked. Some kids get really bad flus, chickenpox/viral or bacterial infections because their immune systems aren't mature enough to handle the burden of the illness. Other kids just happen to get leukemia because their body can't handle the burden of the abnormal cells. In these cases I feel that it is truly a lottery, especially with the cancers that are not attributed to herditary or environmental causes.
Do I believe that breastmilk prevents cancer? Absolutely in some cases. However, all children have immature immune systems until around the age of five, "coincidentally" when they lose their milk-teeth. All children benefit from breastmilk and its many immunological benefits until their own immune systems are mature, but obviously since their immune systems ARE immature they are more susceptible to illnesses (Which is good because they build up their own natural immunities which leave them protected for life the more they are ill as children.) and they are also notably more susceptible to leukemias than those with mature immune systems, although adults are obviously not 100% immune either. Adults do have lower rates of leukemias than children though obviously and I feel that their compromised immunological status is a noteworthy contributor to the rates of childhood leukemias, especially in very young children.
I do feel that breastmilk is essential in both the prevention and treatment of cancer. My son was showing multiple symptoms of his cancer within months of his birth if not immediately following his birth. He was finally diagnosed about a year later. I do feel that the anti-cancer properties of breastmilk, it's optimum nutritional and immunological benefits all contributed to both my son's survival and overall health for as long as he was able to survive before diagnosis.
I also feel that it has helped him greatly to overcome the odds of his prognosis and it has greatly contributed to tolerance of his treatment regimen. He is virtually a normal child even when he was undergoing the worst of his treatment. I also feel that it has greatly boosted his general health and immunities during treatment as he has remained infection free even when our entire family has been ill. Aside from one bout with RSV (Which only manifested itself as a yellow mucusy sniffle because I had it at the same time and he was receiving my active immunities.) this kid has never been sick aside from his cancer.
Proteins found in breastmilk (HAMLET proteins: http://www.sciencenews.org/view/feature/id/8024/title/Milk_Therapy , http://www.thefreelibrary.com/Milk+therapy:+breast-milk+compounds+could+be+a+tonic+for+adult+ills-a0156002012 ) actively cure cancer by causing tumor cell apoptosis. (Essentially they implode and die LOL) I do feel that breastmilk/HAMLET protein centered therapy can potentially cure cancer, but I do not feel that it can absolutely prevent cancer from occurring in the first place as there are too many causes and obviously breastmilk has to be digested and loses some of its potency through the digestive tract.
I personally feel that my son had his cancer before birth, but I absolutely know that his symptoms increased and got worse as he was gradually introduced to solid foods and he began to nurse less frequently. Immediately upon diagnosis I began nursing him as frequently as a newborn again and he ended up being an early, rapid responder. Concidence of course maybe, but his WBC counts at diagnosis were 830,000 and he had CNS 3 disease and was suffering from acute tumor lysis at diagnosis so I can't help but feel that the breastmilk boost could have contributed to his success in some way.
I know for certain that we are maintaining our lifestyle choices as much as possible because it certainly can't hurt. And of course he will be receiving breastmilk for the duration of his treatment and likely longer than that as he establishes his immune system while off therapy. (Although he'll likely get milk from a cup at that point LOL.)
I feel that all of the prevention in the world certainly can't hurt and it may reduce the odds drastically that any given child will have *blah* health issue, but there will always be the odd kid that still gets cancer or has whatever other issue. Their odds may have been significantly less than others, but statistically any risk is still a risk even if it's a fraction of a percentile of risk.
"Virtually every single person's marrow when examined yields some leukemic cells."
Sorry, but this is simply not true.
Leukemic cells are (in ALL, for example, the most common form) a mutated lymphocyte cell. This cell has mutated in three ways.
First, it has mutated so that it never becomes a mature lymphocyte and does its actual job of fighting infection. Second, it mutates so that it reproduces endlessly. Third, it loses the marker which tells other white blood cells to eliminate it as a mutant cell.
While it is true that everyone has immature lymphoblasts in their blood and bone marrow, in a normal person those "blasts" will mature and turn into mature white blood cells which will do their job. Those immature lymphoblasts are not leukemic cells.
Or, they may have a permanently immature lymphocyte, which never reproduces. That immature lymphocyte is not a leukemic cell.
Or, they may have an immature lymphocyte which has lost the marker, so the other white blood cells do not attack it. But it will not reproduce endlessly. That cell which does not reproduce endlessly is not a leukemic cell.
The suggestion that every person's bone marrow has leukemic cells which contain all 3 of these mutations is simply not true. Immature lymphoblasts, yes, but not leukemic cells. There is a big difference.
I am sorry if I am incorrect, I am forming my thoughts based on what our oncologist told us and what I had loosely read based on what we were told. We had been told that it was very common for a healthy BMB sample to yield at least one cell that had at least one "leukemic" mutation or flag if not all of them and that this was normal as the body recognizes these cells as anomalous and quash their efforts for lack of a better term. We were also told that there are currently studies being done into these early abnormal cells in the normal tissue of healthy individuals and their apparent relation to the ability to detect the predilection to leukemias before it's ever proliferated to the point of diagnosis. I think it was something also to do with the intent to focus treatment on enzymes that would force the cells to grow to maturity or something along those lines. We've discussed alternative/experimental stuff a fair amount and I can't remember it all but I'm going to ask for some references that's for sure! I was quite happy to hear any of it obviously because if earlier detection or screening for a predisposition to leukemia based on these few abnormal cells multiplying even slightly could prevent the cells multiplying to the point where it became as terrible as it is it would save so, so much pain.
We were in particular reassured on the "normal" abnormal blast point by our oncologist when one of my son's samples had several abnormal blasts present, but we were told that in fact his sample yielded less than the average person and there was nothing to worry about because the average person's immune system will recognize those cells as abnormal and they will never be allowed the chance to proliferate even if they never grow to full maturity. We just repeated the test later with good results again and were reassured. Particular detail was also paid to a very similar explanation when I questioned the results of the MRD test and was alarmed at even the permissible amount of leukemic blasts present, especially when some (but never enough to worry apparently) would pop up in the CNS again.
Perhaps I misinterpreted what was said or I'm too sweeping in what I consider to be leukemic and if this is the case I apologize. I definitely intend to go to our next meeting armed with a whole whack of new questions!
Here's a news article about some recent research.
http://news.bbc.co.uk/2/hi/health/7973678.stm
It suggests that a number of triggers are required for Leukemia to happen in children, starting with pre-leukemic cells in the womb, and finally an "unusual immune response"
4 years before diagnosis Sabrina had an extreme allergic reaction where her face became imflamed like a beach ball for 2 weeks, I've often wondered if this severe immune response might have had something to do with her later leukemia.
This is also interesting: http://news.bbc.co.uk/2/hi/health/7192420.stm
Goodness knows what triggered my sons leukemia but there are several things which make me wonder. His father's exposure to benzene (worked on oil rig drill floor) over many years, a ripped up knee after a nasty fall a few months prior to diagnosis, a dog bite 1 year prior to diagnosis, and numerous 'bugs' just before he developed t-cell ALL.
Scott was breastfed until he was 2, attended playgroup, didnt eat meat, was all in all a pretty healthy kid until the age of 10 ... until the shit hit the fan.
Alex first started getting sick a week or so after falling off of a 5 foot retainer wall. He wasn't seriously hurt in the fall itself. My theory on that is that he had the cancer cells inactivated and somehow the impact from the fall activated them. When I brought it up to Alex's doctors they didn't think the two were related in any way. Before falling Alex had not been sick - no infections or no recent vaccinations. I'm curious if any other of the kids started getting sick after an injury.
king Alex,
That is soo interresting. I have friends in the medical world that asked if my son had any head injuries (minor or major) before diagnosis as well as any body trauma i.e. falls,bumps, torso bruising They told me "unresearched" medical talk is that it is not uncommon to find 3-6 months prior to dx some sort of accident I can't really give you any more information as I said it is just a common thread they have noticed in being around leukemia. Not always true though for my son there was no such accident or injury. I can relate to the sleepless nights others have spoken about wondering what,how this happened to my son. I try not to dwell and beat myself up, but sometimes I can't shut it out. My son had severe bacterial pneumonia 5mths prior to dx(B-cell ALL), before that he was very healthy. I have 2 other kids and all 3 were breastfed, my leukemia kid was breastfed the longest and I have to say I was the healthiest during his preganancy...who knows!? I suppose if we could find the answers we are all looking for we would have the cure or at least the ability to prevent leukemia and from what I have read/heard so far we are unfortunately a long way off....
King Alex -- how long was it from when he got sick to when he was actually diagnosed, and what was his WBC number at the time he was diagnosed?
Sam was diagnosed on Jan. 15th, 2004, and had a WBC at the time of 48,000. He had been to the Dr. with what we thought was flu (body and bone aches, intermittent nausea, low fevers, headaches) on Dec. 17th, 2003.
Our docs told us that their best guess is that the first leukemic cell probably formed in his body sometime just before Thanksgiving of 2003. (And told us that even if we had blood drawn on Dec. 17th, it probably would have not shown anything more than mildly elevated WBC, which one would have expected with the flu, and that no one could have determined that he had leukemia on Dec. 17th, unless you had an oncologist look at the blood of everyone who had flu symptoms).
Can't correlate anything to the "trigger" hypothesis, though. He was always healthy as a horse, his entire life.
I'm now wracking my brain to think of something traumatic that might have happened around the time Emma got sick. I think I have it pinpointed to late June/early July. She came home from a 10-day beach vacation with her Dad and she had what I thought were freckles but turned out to be petichiae. But as far as I know, she didn't have a fever or any sort of hard fall or anything.
Interesting theory, though.
Alex fell off the retainer wall and seemed fine. (his sister said he landed on his feet then fell forward) Two days later he started limping and when he would turn or twist a certain way he would cry and say he hurt. I ended up taking him to his doctor - X-rays were fine - took him to my chiropractor and he adjusted him. Alex seemed fine then about a week later he slipped and twisted his ankle and complained from that for a few days. I guess it was about 2 weeks later that Alex started having fevers - but he was teething at the time and biting on everything so I didn't end up taking him to the doctor until his stomach distended after about a week into intermittent fevers. I don't remember what his WBC count was. It just seemed like I had a healthy happy kid until he fell off the wall. I guess things could have been brewing in his body before that - who knows. I have always wondered if that fall triggered it. I was just curious if anyone else had an injury before getting sick. It seemed like everyone was mentioning vaccinations and viral infections and such.
Gina
www.caringbridge.org/visit/alexanderwadden
It’s parent nature to question the causes and events that could’ve contribute to our kids diagnoses. I often relate to parents of autistic children who had a normal healthy developing child to only start noticing the sometimes irreversible signs of Autism. They voiced their concerns and found some commonalities in their children’s diagnoses ( like the link between Autism and thimerosal containing vaccines). Studies failed to show a connection but the group of parents who believe the MMR vaccine trigged their children’s Autism continues to grow.
I personally would like to choose to spend my time researching or educating myself towards a cure rather than ‘what cause it?’ but this question will always haunted me and I think and know it’s perfectly OKAY!
One thing we ALL know. There are no definitive answers at this point to what the causes are. But there are a number of good possibilities. We should continue voicing our observations, concerns, ideas, theories, feelings, hypothesis, etc. From where I stand it is NOT a waste of time.
Dominique mom of Nathan, DX 02/07 at almost 3, PreB ALL, Tel-aml1, one ear infection 2 months prior DX, extremely healthy, tested positive for Epstein Barr virus at DX, straightly breastfed until 6 months old (breast milk ONLY) and breastfed until he was 13 months, had a swollen Lymph Node in his groin at 12 months after the MMR that only went down after chemo started, 80% organic diet. Paint and construction in our home and work in the 1st trimester of pregnancy. We live about 5 miles away from Exon refinery and 2 miles from an inactive toxic Landfill (cape in the 80s). We used to live less than a mile from power lines when conceived. I quit smoking cigarettes 6 months before conceiving. No drugs or alcohol abuse history. No Leukemia history in both families. Blood/autoimmune disorder history (Grandmother has Lupus).
This is a very interesting thread. Seems like here, and in other places I've found, people meniton vaccines or significant illnesses in the few weeks/months prior to diagnosis more than anything else. For my son -- he's had his fair share of injuries and illnesses in his lifetime. Hospitialized for several weeks as a newborn w/ RSV, ear tubes/tonsillectomy at age 2, hit by a truck at age 5 (scary with head trauma/concussion, but no major injuries), major hand injury requiring 27 stitches at age 7. Ten months before diagnosis, he got a concussion and head trauma from a flag football game, but docs checked him out and said he was fine. Less than two months after that, he started having tonic-clonic seizures and was diagnosed w/ epilepsy. (Because of the location of the seizures' origins, neurologist says they are not related to the two major head traumas, but I'll always wonder.) Eight months after the epilepsy was diagnosed and controlled by meds, at age 10, he started having bad headaches -- his neurologist thought these were being caused by partial mini-seizures and upped his meds, but to rule anything else out his pediatrician ordered a CBC, which of course led us to the leukemia diagnosis. But other than a bout with strep throat in November, he had no illnesses, injuries, or vaccinations in the several months prior to his ALL dx in March. His white count at dx was 38,600 with 92% blasts in his bone marrow. The docs told us they thought the cancer cells started about a 3-6 weeks prior to diagnosis.
Kristen
Kristen,
Justin also diagnosed at age 10 with pre-b ALL, was hospitalized with RSV at 4 months of age. Other than that, no serious illnesses/injuries. Justin was bottle fed within a few days of birth because he developed "breast-feeding jaundice" and I gave up. The only surgery he had was removal of adenoids because of labored breathing at night. Two theories I have read that I found interesting were 1) keeping our kids too healthy/germ free during the first year of life, and 2) eating too much processed meat? Both are just crazy! My other son's only difference in upbringing (age 8) is that I was able to breast feed for 11 months. We also wondered after diagnosis if our granite counters and stone floors might be emitting too much radon in our house--so we had it tested and it was fine. I think it's natural to wonder, but agree that it's not very productive to dwell---but it's hard.
As to the "too much processed meat" theory, there is pretty definitive medical research discounting that. I had listed all the reseach on a thread on the old boards (RIP) a couple of years ago. I will have to go back and see if I can find that information.
Doug
Here's the comprehensive study done which pretty clearly dispells any link between either the mother's or the child's consumption of hot dogs and processed meats and the incidence of leukemia.
Thanks for digging that up for me Doug. That's one less thing I'll worry about...
I don't as "why", but I ask "how". I'm not sure that I will ever know. There were no powerlines, waste dumps etc where we were living when Eli was concevied. We don't smoke, drink or do drugs. We don't work with chemicals or radiation. Eli has never had an ear infection, strep throat, RSV, croup, broken bone nothing, just ALL and Guillain Barre Syndrome (as a result of the chemo- we think). I am a registered nurse and was working in a hospital while I was pregnant (a three month vacation while we were trying to conceive). I suppose the only trauma I can remember was that Eli bumped his mouth on his dad's knee and jarred his front teeth about 4 months before diagnosis. Hmmm. that's about the time frame that the onc thought this all started- but I think that was a guess. (And if that's the case, all my boys have knocked out their front teeth, yet only one with cancer)
Interesting---Justin weighed 8 lbs. 2 oz. I believe. I wonder what is considered "high birth weight"?
Hmmmm - our Jaymun was 12 pounds 4 ounces
...congenital AML
...born with blue spots all over (see picture)
maybe the high birth weight does have something to do with it.
In my research, the high birth weight was 10 pounds and up and it increased every ounce over 10 pounds. Our son was 10 lbs., 7.5 oz at birth! Big, big boy! I found it very interesting to read that article that stated that if your child was diagnosed under the age of two years old with leukemia - it didn't specify if it was ALL, AML, T-cell, MLL positive or anything like that, it just said "leukemia", (our son was diagnosed at age 13 months with pre-B ALL SR (no MLL 4/11) - and your child was over 10 pounds at birth, there is a strong possibility that your child's leukemia "could" have been caused by the high birth weight as when the baby is born so big, their bone marrow goes into overdrive to produce more cells to keep up with the weight and therefore a "wrong" one could be produced in the process which lays in a dormant state until something kicks it into action....interesting huh? If I replied with this story before, please forgive me, I just saw the last few responses on birthweight and wanted to "weigh" in. I can remember bringing this up before tho...didn't have time to read through all the replies here.
When my husband mentioned about this thread, at once I wanted to look at it. After I have read the comments posted, I went back two years in time. Two years ago, I was thinking exactly the same thing. It was right after we have lost our beloved daughter Melanie.
You can read my story in this link - http://www.montyscorner.org/content/our-history
That's also when CCE Research Alliance - www.cce-researchalliance.com - Childhood Cancer Prevention Research was born.
For me, having no answers to "why has this happened to my child" was not acceptable.
I have researched through many scientific publications since the sixties relating to childhood cancer epidemiology and aetiology and also researched SEERs reports relating to methods used in epidemiology.
My findings made on point very clear that, despite the advances we still know very little about the causes of childhood cancers therefore research has to continue but childhood cancer epidemiology was an significantly under funded area.
Another point which was also very clear that the epidemiological studies are very labour intensive and also inconsistent due to methodological differences used by different teams.
Since I needed to channel my anger to something I founded CCE RA to focus on the epidemiological studies into the causes of childhood cancers.
CCE RA (registered charity in England – 1130106) is now building relationships with universities and other institutes and also building the most comprehensive and universal database to help researchers in their studies. CCE RA has now subject matter experts working as volunteers and other volunteers helping in variety of areas.
We simply want to make expert’s life easier and consistent so that we will eventually know why this is happening to our children.
If you are interested in learning more about the scientific research results in childhood cancer aetiology visit this link - http://www.montyscorner.org/content/research-information
On this link, you will find a short book we have complied about ‘what we know’, ‘What research involves’ and ‘what it means to us’ on Monty’s Corner - our community support and fundraising website.
Meltem
