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Many readers and Ds community members understandably wanted to know more about symptoms to watch out for in leukemia after my last post on this vile scourge.

Mama Lisa stepped in with some tips:

Signs and symptoms for leukemia…

Ongoing fever
Small purple or red freckles on the torso, arms, or diaper area (also known as Petechiae–can Google for pictures)
Flu/sore throat
Tiredness, napping or sleeping more than usual
Night sweats/waking up drenched
Sores that don’t heal
Bloody nose (typically that lasts for a long time)
*Refusing to walk/pain while walking (bone and joint pain)
Swollen lymph glands (in head or neck area)
*Skin pale or grayish color

The two starred items are what we experienced. You don’t need to see all of the symptoms. Leukemia does not always present in the same way. My daughter also had walking pneumonia prior to DX. Many of these symptoms can also be symptoms of other, less serious, health situations. When in doubt, consult your pediatrician which means you will usually want to get blood work done.

The two most common types of leukemia are ALL and AML. They are treated very differently. AML is about 6 months and ALL is 2-3 years with boys being closer to the 3 years because the leukemia tends to hide in the testicles.


Looking around, I found the Boston Children’s Hospital had a good breakdown of the types of the leukemia and symptoms.

HERE is the link.

Do you have more information? Can you share it in the comments, please?



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  1. While it’s more common in our kids, it’s still not terribly common. We need to keep that in mind as we try to keep our worries at bay. I say this as a mother who worries about it entirely too much. My sister had lymphoma- another cancer of the blood- which ups the stakes a little higher for Abbo. Our geneticist said the best thing we can do is get a blood test every six months.

    It’s tough because those symptoms are SO vague. Last time Abby was tested she had the purple dots and low grade fevers. Nothing. I’m worried now because she’s lethargic and has the purple dots. It’s most assuredly nothing. But we worry.

  2. Thank you for the info – it is always a good reminder of things to look for!

  3. With Edith, it presented as a facial palsy. We have been told this is very rare, but apparently the leukaemia can build up and form tiny deposits which can affect the facial nerves. The left hand side of her face stopped moving suddenly one day, and that’s how we ended up in hospital, diagnosis confirmed after blood tests. As I said it’s unusual, but can happen so thought I’d add it to the list. She had been otherwise healthy apart from this, although thinking back I remember seeing a few spots a while back, but they were there one day, gone the next. Had I known they could be a sign, I would definitely have had her checked out sooner.

  4. Thank you for this post meriah! Every time I hear about another child diagnosed with this I freak out! I wish no one had to live trough something like this! After what I went trought with Manolo and Infantile Spasms I’m very good with Dr check ups and blood work routines, If I find some little timmy thing that bothers me I’m on it!

  5. I actually know of several cases of older children with DS who have gotten leukemia. Of the 5 that immediately come to mind, 4 of them have passed away. I don’t know if there is a lower survival rate as they get older, or if it is more a case of the testing doesn’t get done as often. But the fact that my daughter is 4 1/2 doesn’t make me any less scared.

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