Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

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jandrew1032 10/30/2014

Julian is day +12 today. From a clinical standpoint, he is doing well, but from a mother's standpoint, he is really having a rough time. He is in pain almost all the time. He complains about his feet and his head, both of which we believe might be neuropathy. He started Nerontin today--I hope it helps! He also complains about "butt" pain, though there is no visible sign of anything there. I think it is lower GI discomfort. His belly is finally better, and he is drinking milk and taking his oral meds again. I am just at a loss on how to make him feel better though. I know that there can be a lot of pain as the cells grow, but it is so hard to watch him hurting day after day. When does this get better? Does anybody know?

Thank you,
Jacki

planxty 10/30/2014

Dearest jacki,

I'm not going to talk of my current events of cgvhd but my transplant experience. On day + 12 I was still on a morphine pump. Only waking to vomit with the mucositis. On day +13 I realised I could swallow a little. Next day the pump was removed and I began to drink a little.

Everyone's recovery is different but once those pesky counts start to rise each problem gets a little better. Hang in there your doing great and Julian is sooo brave.

You are all in my daily prayers.

Majella

dbrowncsuaedu 10/30/2014

Jacki -- Majella is right on -- it all has to do with the blood numbers and that is just a matter of time. I would expect that things will improve shortly. Julian will not remember what he is going through. I know that provided little comfort. I had my appendix out way back with I was about five or so -- that would be 1948 or so -- and the meds were kind of primitive back then. But it was much worse on my mother than it was on me. They had limited visiting hours back then as well and the homesickness was far worse than the pain -- kind of weird remembering something 65 or so years ago, but it is quite vivid. My point is that this is probably harder on you than it is on him. He will get through it and all should be well in another week or so. In the meantime, we are all praying for Julian and for your entire family. Thanks for keeping us up on things -- dave

jandrew1032 10/30/2014

Thank you both. Today was, in fact, better. He is not groaning tonight and seems relatively comfortable. His heart rate is a little high, so I think he may still have some pain, but it must be better than before. Hopefully things will just keep getting better! Thank you for the prayers!
Jacki

Noodle65 10/31/2014

Praying for precious Julian

ccwong 10/31/2014

Kids are usually much tougher and more resilient than adults. He is a tough strong boy and will pull through. Praying for strength for the entire family.

worriedmom2014 10/31/2014

Jacki

Praying that Julian starts feeling better real soon.

Karen

Noodle65 11/03/2014

Jackie

Praying Julian is improving everyday.

Julie

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