Jacki: Welcome to this group, where you will find many wonderful people eager to help.

Some questions: Have you asked for additional information, openly, to your doctors? Did Julian had tests looking for genetic abnormalities, or he didnt?

I suggest that, to start with, knowing what he was tested for, or not tested, is important. I am not a doctor by all means, but never heard about being "low risk" based on the responde to induction. Please dont take my words as oficial.

S

Hi Jacki,
Welcome. I am very sorry to hear that your son has been diagnosed with AML, but glad that you have joined the group as you will meet a lot of friendly people here who are very willing to help. My father had AML and we were never told anything about his genetics, what type of AML he had, what group he was in, etc... It wasn't until I happened to look at paperwork that was sent home with us months after his initial diagnosis that I learned what type of AML he had. Also, I agree with shimauta - I have never heard of one's response to induction as being an indicator of risk. There are people here who had a very rough time during induction who are thriving and doing very well today. Alternatively, you will hear of others who may have breezed through induction, or at least tolerated it very well, and still were high risk and relapsed. I wish you and your son nothing but the best. My thoughts are with you. Give the little guy a hug from us :)

Thank you both for your responses. I do know that they did cytogenetic testing, but we were never given very specific information. We were simply told that he did not have any of the "bad" makers (which they said were FLT-3 and some of the more severe forms of AML. We were also told that he did not have any of the "good" markers. We were told that he "most likely" had M1 or M2. He was then placed on the "high risk" or "low risk" protocol throughout treatment, based on his response to each round. After induction, they did the basic BMB in the clinic, showing under 5% blasts. They did another more sensitive test at COG in Washington that measures the number of leukemic cells per 10,000 cells. That test showed 0.03% leukemic cells after induction. He had to have under 0.1% to be placed on the low risk protocol. From that point on, he had to have under 5% blasts for each BMB to remain on the low risk protocol, which he did. We were never given more information than high or low risk, which I believe is the language used for the protocol. The thing is, I would like to know more. Perhaps I can ask for more information at his appointment. I would assume everyone has some genetic markers/abnormalities that can be identified, even if they are not the most common and most studied ones?

Hi Jacki
I was told that i has normal cytogenics which placed me in the intermediate risk group.I refused to do any research on aml when I was going through treatment so I didn't question any further. When I completed treatment and started doing research and learned more about the details of aml, I often wondered about the specifics of my genetic markers.I decided against asking my doctor about this because what would it change?My treatment is finished and knowledge about my markers will would not change what my future holds .I try every day to focus on the things within my control and enjoy today.

There is life after AML and it is up to us as to what we do with it.

I think you are very brave and cannot imagine what it is like to see your baby son go through AML. You have gone through the worst and survived now it is time to rejoice in life.

All the best and here is to many birthdays and lots of cake!

Lisa

Hi Jacki,

we were also not really told, even though we asked on numerous occasions, We were told something to do with 7 but in the end we just decided that we had to just no focus on so much the scale of the AML as we were positive that we were going through it.

We were however recommended that we should have a BMT due to the risk of my mums AMl coming back. We do know that others who were going through the treatment at the same time were not put on the same path ( maybe as they had a lower risk)

It must be hard for you looking after a young child with AML, keep up the positive thoughts and whilst don't isolate your child keep his diet and health as healthy as possible :)
xx

Jacki,

I am so sorry you have had to endure watching your child go through AML treatments. I am the mother of three daughters-9, 11 and 13 and I cannot imagine the stress your family has gone through.

I was very fixated on my subtype because my med team explained that there were nine and that they were divided into three groups-favorable, intermediate and unfavorable. It took about two weeks for the results to come back while I was getting my Induction.

I prayed and prayed for a favorable sub-type. I have Inversion 16 that is considered favorable along with a negative FLT3 and CKIT test. The only correlation with a patience ability to tolerate treatment was discussed when my counts took forever to return. If I was unable to have all four consolidation sessions, I would have gone to BMT.

But what I have realized after 11 months of battling this disease is I am happier adopting an attitude like Lisa's. At this point, what really matters is that I have another day of life-by the grace of Almighty God! If I relapse, I will have a BMT if a match can be found. I can ((and have) make myself physically sick thinking about the what-ifs. I took a path and now I'm riding it out.

Maybe childhood AML is treated differently? I am glad that your son has completed chemo and is in remission-what a blessing. My family will add Julian and your family to our prayer list.

Blessings,

Julie

Thank you all for your comments. I was just curious if there were others who did not know specifics. You are all right that it doesn't really matter whether or not we know what they are. There is no sure thing either way. I'm glad that he did well with treatment and that he got through it. I hope he doesn't relapse, but like Julie said, if he does he can get a BMT. I try not to obsess about it, but it is scary to make plans, because things got derailed so fast when he got sick. I'm hoping that gets easier. When Julian was diagnosed, my daughter (now 11 months old) was only 5 months old. It was hard on her to be bounced around for nearly 5 months. I liked the point that somebody made on here in on a previous topic...that everyday in remission is another day on his side. I can only imagine what all of you are going through, and I hate watching my son go through it. I am hoping that the fear and anxiety gets a little bit less with each follow up appointment. I wish the best to all of you too. It is good to have a place to vent some of this, because I know you all understand.
God Bless,
Jacki

Jacki: many, many of usar, here, go on daily basis till our mind becomes a little more confidente. Mi suggestion, if possible, if you feel you need it: find a onco-psycotherapist to work out you fears and learn some basic survival tools for keeping your mind quiet. I do this and has helped a lot, together with strong spirituality and Biblic reading, praying and studying. One day you will feel your fears have less and less power. In fact.... Live! Every day is a gift to enjoy! A new life

Jacki,

I am told that as time passes the anxiety subsides. I am still where you are with Julian-very stressed, especially around check up time. One thing I hope my post conveyed is even though I got what I prayed for-a favorable sub-type of AML, my treatment plan did not go as planned. It took twice as long as projected. And now my med team is concerned about relapse because my platelets have dropped just three months after my last chemo. The lesson I take from that is there is no perfect scenario. There are warriors on this site who opted for BMT and who have done amazingly well. My med team constantly says everyone is different and it depends. My take away is we as humans strive to find commonality with others to grasp onto, for comfort. With AML, that is hard to find. Our diagnosis may be the same but our path to recovery completely different. My heart aches at the thought of a beautiful innocent little boy such as Julian having to deal with such a heinous disease. My family just prayed for yours. Please keep us posted on his progress.

Blessings,

Julie

Jacki -

I can't begin to imagine the worry you have felt around your son's illness. The anxiety is overwhelming enough when the situation is more typical, such as is the case with someone like my dad, who was diagnosed at 68 years old. I'd like to see our group include more from those who are dealing with pediatric aml, because even if it is less common, it is very much out there. While I don't have experience enough to give you any specific info re: your question, I did want to add that I have seen that kids tend to do much better with AML and the treatments associated with than do older patients, and that there is every reason to think that your little boy will do great, too. Please let us know if there is something we can do to comfort or support you.

Best,
Robin

Jacki: We are sad you were required to join us, but more than welcome aboard. It is surprising to me that they did not give you the information -- just be sure to ask for it and get as much as you can from them and we can probably help if we get those details.

There is a chance that they do not know. When I was DXed about 4.5 years ago my onc said that he "THOUGHT" that the saw a T{8;21} -- that is a translocation of the 8 and the 21 gene (or something) -- in other words, the stem cell(s) mutated to produce this defective blood cells, and perhaps the mutated stem cell somehow was able to produce other stem cells with the mutation. It was almost like he was saying -- we think we saw it and because that is a good indicator, then we are going to give you a shot at some intensive chemo -- I was 65 at the time and was not figuring there was any hope. In other words -- it sounded kind of fudgy to me -- like he was as much hoping that he saw it as he actually did.

Now it seems to me that now some of these markers tend to pop right out and a lot of the people on this forum are fairly certain of what is going on. As for me, I am not so sure -- the oncs I have talked to about this (my son has a best friend who is a hematologist) ... they give me the impression that this is still in the art area and not progessed to the science yet. So it could be that they do not want to tell you anything that they are not sure of ... and they might not be sure -- it is kind of like looking into a crystal ball or reading tea leaves. Not putting them down -- after all, they saved my life -- but we tend to give science WAY too much credit. What we do not know is a billion times what we do ... we are just scratching the surface, and 50 years from now they will look back on what we are doing and get a good laugh out of it.

The other things is that the treatment is the same regardless and regardless of what the numbers say, they are going to treat a 2 year old. I don't know about me at 65, but I have not heard anyone being turned away because of age.

Time will help your constant worrying. There are probably many other health and non-health things you need to be worrying about in his regard, so don't waste it all on AML. Time should help as well because the survival curves are negative exponential -- that means the level out considerably as time goes by and the longer one survives the greater the chance of additional survival -- so you can take comfort in that.

Your son is the youngest we have on this forum -- I do wish we could help the younger victims, and you certainly will be able to, so we all are hoping you will stick with us and provide your unique expertise. We are all praying for you and Julian -- dave

I read in some papers that AML is rare in children,LIKE ONLY 5% HAVE AML, BUT THEIR'S LIKE A 95% CURE RATE,ADULT IS ABOUT 50%,I HAD MDS THAT CONVERTED TO AML,SO I HAD A 25% CHANCE OF A CURE,I WAS 57 AT TIME OF MY TRANSPLANT,MY DONAR WAS 1 IN 7MILLION,IT'S BEEN 4YEARS I'M CANCER FREE,A TRUE MIRACLE.