I constantly wonder why my child got leukemia. I try to think of places we went, or things we did that may have contributed to her getting it. I know they can't say for certain what caused it but I was wondering if other parents gave a lot of thought or had any suspicions to why their child got leukemia. I know that my daughter was in family members houses who smoked. But I think back to my childhood when smoking near children was extremely common and none of us got cancer.
I also considered when we went to a farm/cider mill. It was only a few weeks before she was diagnosed. We drank unpasturized apple cider. And if there is no link to unpasturized items, maybe there was some kind of fertilizer mixed in somehow? I was reading about fertilizer and this seems to be one of the biggest risks.
I'm not trying to blame anyone..what is done is done. I guess it's just constantly on my mind. Do any of you think about these things? Or have any suspicions?
There was a thread on this. My doctor said there's a theory that it's a mutation of the blood cell, often a random mistake. Usually the body destroys the mistakes, but sometimes one survives and begins multiplying.
He didn't expand on that, but some substances, like benzene, can increase the rate of mutations. Also, it is possible that if the body is fighting another illness it might be more likely to miss destroying the cancerous cell.
My son had the flu a few days before he was diagnosed, and I wondered if that caused his body to miss that bad blood cell. He probably had it earlier though, I'm not sure that would be enough time for his blood counts to get that far off. Probably it just made it easier to diagnose him.
For the younger ones, the two year olds who are the biggest group with ALL, I've heard it could be a mutation that they were born with. My son's a teenager so it's unlikely he was born with it. But as far as I know the incidence of ALL has not changed much, so it is unlikely due to anything that we have been using more of in the last 30 years.
I think a lot of us, at one point or another ask why - and as far as I know, none of us have found an answer...
I wondered if it was something I did when I was pregnant, or something I fed him - but I didn't do anything different for Alex that I did with my other two kids. Alex is the 2nd of 3 kids in our area (that I know of) that have been diagnosed with ALL (all within the last 4 years) - it seems more than coincidental considering we are in a very small, rural community. So is it pesticides, etc. Kinda hard to prove.
There was a discussion on the boards at one time - and the opinions ranged from vaccinations, physical injury, pollutants and a whole host of other theories.
For what it is worth, I lean toward it being a random mutation that for whatever reason the body does not fight and it and cancer is the end result. It seems like a lot of people can link their cancer it to injury, vaccinations, recent illnesses, etc. Do I think there are risk factors - you betcha. But there are also millions of kids who are exposed to those same risk factors and don't end up with cancer. My son seemed perfectly healthy until he fell off of a retainer wall - things rapidly went downhill from there. That was my suspicion however, millions of kids get hurt each day and they don't all end up with cancer.
Try to focus on your daughter's future - you are right, what is done is done and nothing in the past can be changed. And don't beat yourself up over the maybe I could have prevented it scenarios.
We laid a new floor when he was 3 months old. The glue had benzene in it. I am certain that is the reason. I was laying the floor with the outside door open (it is a backroom) and him in the next room where I could see him on a blanket. That is why he has it. My Onc disagrees and says it takes much greater exposure to benzene than that, blah blah blah. It is my fault and there it is. No one can convince me otherwise.
Now- in truth, I am sure that my Onc is right. But there is this tiny kernal that still believes I caused this. And, in the end, how he got it doesn't matter. He has it. 90% of the time, I choose to let someone else puzzle out this question. Every once in a while though, I trot out the "reasons" and try to come to some definitive answer. I get why we go down this road, I would say not to spend too much time down here. It is a dead end wrapped in guilt.
Oh the internal dialogue I have had about this question...especially at 1 am, 2 am, 3 am, 4 am...or when Evan is sedated...or when watching the chemo drip, push, plunge into his body. I so appreciate 'dead end question wrapped in guilt.'
Instead of allowing those dialogues, I give into tears for the pain THEN I remind myself 'it's not about the why...' (thanks Kristen), 'it's a miracle Evan was diagnosed...' (thanks Margaret), and long before cellular phones / electricity towers / floor chemicals / vaccinations children were diagnosed with leukemia (thanks ONC). I then remind myself that I need all the energy I have to 'win' this journey with Evan.
When we know the cause for leukemia, we will have the cure.
Thank you so much for the answers. Had my daughter survived, I know that I would simply have been greatful and unquestioning. But now I'm just left with this big hole of grief, guilt, sadness and anger. I constantly find myself back to the orginial question of "why?"
But I did like "dead end question wrapped in guilt". Because no matter the reason, I'm sure I would find a way to hold myself responsible. If I could just get over this guilt stage, maybe I could start working on that hole.
AnasMom, I know that all of us wanted to know the answer for these question "why our kids"? And I asked myself about the same thing. 3 weeks before my son's diagnosis we came from my country when a lot of people was smoking around him (so the same problem). Also here in US some people was smoking but never when Philip was around. So, for me it's sound like lukemia's culprit but for sure nobody knows...
I'm so sorry - I didn't realize your daughter has passed away.
I'll say to you, myself and most parents - you did and or do the best with what you have and what you know at the time. And even IF you did something that could have caused the leukemia (please note the IF) it was without your knowledge or intent.
I used to worry myself sick over this one!! Then I noticed the Amish families at St. Jude. There are several and every time I see them I forgive myself for everything I 'might' have done to 'cause' Emma's leukemia. Their children eat natural foods, are not exposed to electricity or cell phones and they are all breastfed. These are obviously generalizations but you get my drift. So I remind myself that if THEIR kids are getting leukemia then it's not likely something I did to cause Emma to get it. I believe that it's a random occurance and that her body went haywire. I think we are just programmed to believe there are environmental causes because many adult cancers can be attributed to different things. But even non-smokers get lung cancer too, right?
The other thing I do to get perspective is to imagine Emma being mothered by someone else as she goes through treatment. Just the thought of some other woman tending to her while she gets chemo sends me to a place where I'm grateful to have been chosen to be the one who gets her through this. It takes me from the 'why me' mood to the 'thank God it's me' mood.
Fact is, we will likely never know the cause so there is absolutely no point in beating ourselves up over it. But as moms (and I'm sure the dads experience this too), we blame ourselves for everything that happens to our kids from the moment they are conceived. They are our responsibility so if something happens to them it MUST be our fault, right? But just remember that worrying over this stuff takes your attention to places it ought not be. I try to focus on Emma's needs and push these negative thoughts out of my head because they are counterproductive.
Just know you aren't the only one to feel this way. It's very, very normal I think. I hope that helps.
When my son was 4 years old we bought a house in the spring. That house had a creek that ran along our property, all that spring and summer long we would sit outside and he would spend hours throwing rocks in it. In the fall when the leaves fell, I noticed that there was a pipe coming out of the autobody shop that was on top of the hill and it was dumping into the creek. I immediately called encon, but never heard anything. We moved away a year later (military family), when we returned three years later, that creek had been filled in by the town. Now, I often find myself wondering, why did they fill in that creek? I suspect my son got leukemia because the pipe coming out of the auto body shop was probably from one of their bays that they paint in. Therefore my son had exposure to benzyne. Now years later, I still keep thinking how could I find out why they filled in that damn creek.
My daughter, Mary Kate, is six years off treatment. She was DX in 2001 with ALL, and on treatment until 2004. I still come to the board now and the because it was so important to me. The people here are like family. I probably won't offer any advice that someone else hasn't already said, but we had/have the unique position that Mary Kate has an identical twin, Sarah, who did not get leukemia. Her oncologist called Sarah the "litmus" or control group. I drove myself crazy- we had horrible fire ants, and we would put Diazinon out in the yard, and the girls would run barefoot outside. I didn't always wash their apples as well as I should have. I painted the house when they were babies. They both had urinary reflux and had numerous xrays. They ate processed turkey that was smoked. But they bathed together, slept together, ate exactly the same foods. My oncologist put his hand on my shoulder one day and said, "Whether it was nature or nurture that Mary Kate got leukemia, why didn't Sarah get it?" I am not kidding- they took every step and every bite together. I think it is natural as a parent to wonder what you could have done differently, but this sure did help me to look at it from a little different perspective. You are all fabulous Moms. My thoughts and prayers are with you.
Mary Kate is 15 now, and I thank God every day that she is walking the face of the earth.
First, please accept my condolences on your loss of Ana. I can not imagine how hard that must be.
Secondly, please forgive me if I ramble a bit here or go off topic, but this is something I think about a lot and to me the more thought I give it, the less it all adds up. The thing is, if you look at the "risk factors" they say middle class, 1st world country children are more likely to develop leukemia. How is that possible if it's caused by benzene emissions or electrical towers or because we're too cheap to buy organic? (tongue firmly in cheek on the last one, of course). It's not possible, of course. The thing is, the risk factors are determined by case studies. Who is more likely to be diagnosed with cancer is all I think stats like that really identify. If the emission etc were such a direct link, wouldn't someone have noticed that children in the poor 3rd world countries that don't have emission standards, or house the factories where the benzene is produced, would have been found to be huge leukemia pockets? Maybe, maybe not. Maybe nobody is looking at these kids, period. However, world health care people HAVE already identified the unbelievable health damage being done to the children in the African and South American villages where our discarded technology waste ends up. They burn off the rubber to get to the cooper wiring and it's atrocious the direct link to health damage.
I am no expert on any of this but I tend to fall into the 2 hit theory group: basically, I think that all of us have the potential to develop all kinds of disease but our body fights them off or supresses them. However, for some, they just can't for a myraid of reasons. Look at the higher incidence of leukemia in children with Down's Syndrome for instance. In our case, my boys are all having the exact same upbringing with the same basic food/chemical exposures. The difference in Joey is that he has had 6 ear tube surgeries, 2 adnoid removals (they grew back), a broken arm requiring a series of xrays and serious constipation that required full body xrays on 2 occasions. So...did something in all of that cause the leukemia? I don't think so, but did so many other medical issues limit his body's ability to contain the bad cells? Maybe.
Anyway, just my 2 cents and not even worth that but I think that we have to give ourselves a break. Take Shakingquarker's reponse for example: if it was anyone but her saying that laying a floor had caused her son's cancer, wouldn't we all be tearing that person limb from limb in "What not to say to Leukemia Parents"?
I wanted to say that I mostly agree with the two hit theory. My son was adopted from Ethiopia at the age of 6 months old. He was a very healty child with the exception of recurrent ear infections. He got them every six to nine weeks up till the age of 18 months old when he was finally able to take Zyrtec every day then they went away for good after that. I had spent a lot of money on his adoption and did not really have much left over after daycare to take him here and there. So he has been in the same town since he got home at 6 months old.
Before he was diagnosed everyone in the house came down with a strange virus with flu like symptoms and my Mother and I got better in a few days but it seemed that Nathan never really fully got over it. He started to lose his appetite and weight and started limping when he walked. We took him to the doctor and while ruling out sickle cell (I asked them to do this test as the symptoms are simular and he was never tested for it when he first arrived to the US) they found out that he had Leukemia.
When he was first diagnosed I used to feel bad that maybe adopting him out of a 3rd world country got him exposed to something that caused his cancer. The doctor told me that he would likely have developed it while in ET and probably would never have even been diagnosed with it at all since most people in ET only go to the doctor when they are really sick and he probably whould have died (or been close to it) before he was taken to the hospital. Most kids in Western countries are taken to the doctor for fevers right away but it is not likely he would have been taken right away for fever in the poor area that he was from.
Looking back he was not exposed to any chemicals, smoking or xrays etc that others have suggested caused their kids Leukemia. The only thing that I can point to is the antibiotics that he was given so often as a baby and the virus he got right before he was diagnosed. As far as I know antibiotics cannot cause long term harm except for resistance from using them too much. So I don't feel in any way guilty anymore and I now believe that I may be saving his life by having adopted him so he could have the best care possible in the US.
I do not dwell on this much as I am focused on Josef's survival right now....but oh my I would get lost in this if the worst were to become a reality. So I really do get why you are interested.......so sorry and angry too.
I think the two-hit theory is the most accepted view. I am not sure but Josef did test positive for Flu about a month or two before diagnosis...although I don't know about that either as maybe the test only showed his lack of immune system due to leukemia already present.
I also believe in a 2 or more hit theory. And, I have experienced this guilt...but not with Maddie and the leukemia. I experienced this guilt when my oldest daughter, now 23, was diagnosed with juvenile diabetes at the age of 6. I was sure that it was my genetic crap that I passed to her that caused it. It took 2 years, lots of counseling and Zoloft to get past it. Now, it is my husband who is feeling the guilt (my oldest is from a previous marriage). Maddie is his baby, he quit work to take care of her, he has gone back to nursing school, he is doing everything he can do to keep the guilt monster away...but its not gone yet. Basically, there is NOTHING we could have done to prevent our children from getting this disease. We have all, however, done everything in our power to treat the disease.
Ana's mom, I can't prentend to know how you feel, and won't pretend that I do, I am so very sorry that you lost your daughter to this monster. I suspect that in your mind, you know that you couldn't have prevented the cancer, but your heart is filled to too much grief to forgive yourself. I hope you can find some peace and forgive yourself. You are a great mom.
I found reading this thread and the other one that was bumped up interesting.
There isn't really anything at all I can point my finger to. My daughter was the picture of health prior this diagnosis. She was a small baby, a little under 6lbs at birth. She hadn't had a flu shot in two years. There are no environmental concerns. Never around paint fumes or anything like that. Her only symptoms before dianosis was high fevers.
I can see how some stories fit right into different theories. But so far, none of these match my daughter and her story at all. I hope someday they do figure out what causes this horrible disease.
The two hit theory seems like a chicken or egg conversation. Will kept getting sick right before he was diagnosed... he just never seemed to recover from whatever he had. Before he was diagnosed and kept getting sick, I kept blaming myself for struggling with giving him the antibiotic (which, on another note seems so foreign now- we call his bactrum the "easy one"). I digress...
So, was his inability to get get better something that contributed to the leukemia, or was he unable to get better because of the leukemia?
My strange thing that I am 'convinced' caused his leukemia is one day we were playing/wrestling/rough-housing... I flipped him over and I heard his back crack- really bad. I really thought that I paralyzed him. I remember in that instant praying, "oh, please don't be paralyzed." I feel like rumpelstiltskin answered my little prayer, "okay... but something's coming soon."
I keep thinking that I must have done something that caused something in his bone marrow to go crazy.
Now, I know that this idea is absolutely bonkers, but it is definitely one of those things that creeps in at 2AM.
I have to agree though, that when they find the cause, they will find a cure.
Hi all, new to the board. My daughter was diagnosed with A.L.L at 6 months old. we went thru BMT at 21 months. today she is 16 and although we have health crisis here and there (most recent are kidney issues) she is, for the most part, a typical 16 yr old girl! I believe the trigger for my daughters leukemia was a severe allergic reaction to a brand of diapers when she was about 3 months old. Cancer is cellular changes in the body what better way to trigger that then an allergic reaction. I beat myself up ALL THE TIME (an probably need some therapy at this point!) over choices/decisions i made concerning her health and treatments but we do the best we can. I was a 22 yr old kid with no clue. today I am a 38 yr old nursing student who can talk circles around most doctors i have dealt with. There is no blame on the parents, anything we do/did is out of love. we just need to have faith in ourselves.
look forward to chatting with everyone!
excuse the poor typing, going on night 3 of no sleep, got to love insomnia!!!
Sometimes I wonder if my son's leukemia developed because his body got tired fighting off allergies. He is allergic to peanuts, dairy products, eggs, cats, dogs, grass pollen, and gosh knows what else. I wonder if his body was so busy fighting all of these environmental things, that it just got worn out. Allergies are linked to the immune system and so is leukemia. His immune system was just too overworked. 18 months into treatment. 20 more to go!
If it helps, my other daughter does have allergies, and asthma, and many days takes more pills then my cancer kid. BUT she does not have cancer. Not to long ago, Gabbie was feeling sorry for her about it and said, "Someday I'll be done taking pills, but you will have to keep taking them" and they both agreed that asthma/allergies was worse then cancer. The beauty of youth!
Everyone here's story is a bit different. Some are all organic, some not at all, some vacinate, some dont', some kids were always sick, some never were. Please don't beat yourselves up. There isn't anything you did that caused this. It just is.
Yeah, this is the question that wakes me up at night ...not much thankfully, but sometimes. I really wonder though, in our case, if the point at which I noticed something wrong is just a point in time that I cling to .... after being exposed to someone with a very bad cold/or flu over a two day period, my daughter's symptoms started the next week. So, of course I thought she was fighting off the flu - fevers, weakness, headaches, etc. At diagnosis, she had an "un-diagnosed" Eppstein Bar Mono and strep. How it was un-diagnosed after 8 visits to the pediatrician still bothers me - but I wonder if her body just couldn't fight it anymore, and it "became" Leukemia. I know it's not logical, maybe the timing was coincidence, but I find myself wanting to blame exposure to that situation ...but there were tons of other kids that weekend - they all didn't end up with Leukemia - so it can't be true. Its me looking for blame, for something that there is no reason for - other than the randomness of the world and all things in it ...so I have to focus on a cure, and being as happy and as forward thinking as possible ....there will never be an answer ....ugh...
I've been off the boards for awhile, but I found this post particularly interesting. I just had a conversation about this with Rett's oncologist. Rett has tel-aml1 and he was born with it...it is associated with a good prognosis but perhaps a delayed relapse (5-10 years out). I was trying to understand the science of what did/could/might happen. His onc stated that there are tons of kids with tel-aml1 that NEVER develop leukemia - so perhaps the two-hit theory is the case for the tel-aml1 kiddos. But even within the subset of preBALL, there are probably hundreds if not thousands of possibilities of how leukemia develops...and hence why the cure seems impossible to me, a former bench scientist, then clinical drug development scientist, now stay-at-home momcologist...
And I so sorry for your loss. No words. Cannot imagine.
Hi RettsMom, My son Sam also has the tel-aml1 fusion and I second your two-hit theory, based on articles I have read. Here is a link to one that is interesting: http://bloodjournal.hematologylibrary.org/content/117/1/2.full There seems to be controversy around this concept and the report suggests that further detailed studies would be helpful. I also understand that the prognosis of the tel-aml1 fusion remains controversial, because of the idea that the overt leukemia cells seem to be highly sensitive to chemo but, like you said, there is a concern over late relapse. Apparently, the pre-leukemic clone may persist through treatment and could develop into a new overt leukemia, ie with yet another "second hit". I have also read that this new leukemia may be just as sensitive to chemo as the first case with the same good prognosis, but obviously there is a limit as to how much total chemo one can handle. Unfortunately, from reading this info, I don't expect to become more relaxed the further past treatment Sam gets, but may become more concerned instead watching for signs of late relapse. I know we will never stop worrying to some degree. Becky
Wow Becky! That is an interesting article. Thank you for sharing. Very different hypotheses presented. I think once you're a cancer mom, you're always a cancer mom. I cannot conceive of a day when Rett has a bruise or a fever or is tired and I don't immediately think of relapse. God willing, this will be a concern for many, many more years to come. I hope to worry about it while he graduates high school, college, gets married, has his first child, and so on Good luck to Sam!
I m sorry for your loss, I can't even imagine .My daughter was diagnosed April Fools Day this year , ironic ,every waking moment on some level that questions haunts me what could have caused this ? How could this she have gotten this? The first few das of her diagnosis I found myself scanning through cellphone picture albums just looking at her pouring over pictures trying to figure out when did it start? She doesn't look like she had leukemia in this picture...she had a rash here ...she had night sweats here. She had been limping and had fevers for a month before she was diagnosed I took her to ER for X-rays in the beginning they were normal everyone though I was a crazy overbearing mother, nurses made very mean snide remarks LOL I have wished with all my heart God if only they could have been right .She had normal platelets hemoglobin white cell 15 days before,a normal bone scan but there it was when it was ready to be found. She had been sick on and off for the last 6 monthsjust after she started preschool I drive myself crazy wishing I pulled her may just maybe if her immune system had a break or if I hadn't given her the nasal spray flu shot or if she hadn't spent the summer in the backyard maybe it was the pesticides
sigh there's no end it it but I am trying to keep perspective since we cant go back there is no choice but to deal with each day as it unfolds...