Info Sought on Childhood Leukemia

July 15, 2008 4:51 PM

Childhood A.L.L. Luekemia My 2 year old niece was just diagnosed with this today and we are scouring the internet trying to find out all that we possibly can. She starts CHEMO tomorrow. Any personal experience or ideas of informative websites would be appreciated. Not generic websites but detailed and resourceful sites.

Her doctors will certainly keep us informed as we go but since we are in the very beginning stages its all we can think about. Anyone that has anything at all to offer, it would be appreciated. Even if its on info on CHEMO and its effects.

She had a biopsy done on a swollen lymph-node behind her right ear. Turns out it was 94% Cancer. They initially thought it was Non-Hodgkins Lymphona but a bone marrow biopsy distinguished that it is Leukemia.

Again any information or suggestions where to find information is appreciated.

posted by slowtree to health (7 comments total)

I think this site from the Seattle Cancer Care Alliance may be helpful to you. It's directed towards people undergoing treatment at the SCCA, but it has a lot of useful information about treatment for that type of cancer and what you can expect. Best wishes to you and your family.

(disclaimer, I work at FHCRC and work with the SCCA)
posted by Craig at 5:33 PM on July 15

ALL is one of the least serious of the childhood leukemias. 20 years ago I was going through the same thing with my nephew. He is 22 now and doing fine. Boys typically receive longer and harder chemo than girls. I have lots of other information but it is 20 years old, so I don't know the latest information. Just know that although this is a terrifying time, the medical community has made HUGE strides since the 1960s against this disease and most kids do ok.

The first phase of treatment is to get the marrow working normally again. Then they go through several phases including a long maintenance phase. In my nephew it lasted 5 years.

The eye opening thing for me was being at the hospital in those first few days and having other parents say "I wish my child just had ALL". That's when I realized that although this was bad, there were many things much worse.

Here's a site that may be helpful... Childhood ALL

I got the most help from the local pharmacist who could tell me all about the drug protocols used.

Best of luck to you and your family.
posted by Jandasmo at 6:00 PM on July 15

I'm sorry about her diagnosis. If it's any help at all, treatment for ALL is much, much, much better than it used to be. American Cancer Society has lots of information on treatments for ALL. Another good source for info is UpToDate, which is kind of a clearinghouse for clinical information and research.
posted by BundleOfHers at 6:06 PM on July 15

(FYI: I'm a pediatric oncologist, but you should talk to yours in depth):

First, I'm sorry to hear that your niece was diagnosed with ALL (acute lymphoblastic leukemia). It's the most common childhood cancer, but fortunately, the most likely to be cured.

The treatment for ALL is long (1.5-2 years), and depending on what regimen is being employed, can be uncomfortable at different periods of time, but typically results in a high remission rate, a high overall survival, and good long-term outcomes, even for children treated as young as two. Of course, there are always caveats and subtleties. There are certain variants of ALL that can be more difficult to treat (standard- versus high- versus very-high-risk of relapse).

Rather than go through things in depth here, if you'd prefer to just contact me directly (via MeMail) that'd be fine. Otherwise, the resources that people linked to here (ACS, UpToDate, etc.) are good. I'd also checkout CureSearch, which is the Children's Oncology Group site. The majority of pediatric oncology centers in the US use their protocols for treatment. Of course, your child's oncologist will be the most help. Again, if I can be of assistance, please e-mail.

Best of luck.
posted by scblackman at 6:13 PM on July 15 [2 favorites]

The Leukemia and Lymphoma Society's Newly Diagnosed page.
posted by RakDaddy at 7:08 PM on July 15 [1 favorite]

Well this isn't exactly what you asked for, but I know a number of families who have set up a Caring Bridge website to help keep everyone updated. Helps keep down on the constant phone calls and individual updates. I helped a coworker set one up for her nephew and it was really easy. Just thought I'd pass that along.
posted by radioamy at 7:23 PM on July 15

When my dad did chemo, he loved to drink Hawaiian Punch. He said it was one of the only things that didn't taste weird.
posted by melodykramer at 8:34 PM on July 15