Childhood leukemia

My daughter's friend was diagnosed with an agressive form of AML leukemia about a week ago. :(

Does anyone know much about this? I looked it up online, and it seems that there is currently a 53% survival rate. :(

During 1996- 2002 relative survival rates overall were:

Acute lymphocytic leukemia (ALL): 65.2 percent overall; 90.5 percent for children under 5
Chronic lymphocytic leukemia (CLL): 74.2 percent
Acute myelogenous leukemia (AML): 20.4 percent overall; 53.1 percent for children under 15

(from http://www.leukemia-lymphoma.org/all_page?item_id=9346)

I was just wondering if anyone has anything to relate. I told my daughter that her job as a friend was to visit frequently, get her mind off of how she feels (because she will feel badly with the treatments) and fill her in on all the classroom gossip (5th graders!!) so she still feels part of the group. (Their class has been together since kindergarten, in a spanish immersion program. It's a very unique situation!) I want to go visit her with my daughter and some of her friends, maybe just one, on Monday, when we both have off. She is in the best children's hospital in the country, Children's Hospital of Philadelphia. (CHOP)

I've only interacted with her mother at the school, and on some field trips in the past. The friend has never been here on sleepovers or playdates, but does do that at my daughter's dad's house every so often. Oh wait--N. was here at my daughter's 10th birthday slumber party in Sept! I want to call N's mom to see what the schedule is, to find out a time to go over. I'm concerned about calling at a wrong time, or interfering. I just feel weird because I never phoned her before. Know what I mean? It won't stop me from phoning, I'm just saying how I feel I suppose because I don't want to interfere. I'm sure lots of people have been calling though.

What can I plan for the visits? Just to hang out? Should I bring something? A game? Snacks? (she might be too nauseus?) I just never had this situation before. I've visited people in the hospital, but never anyone with cancer. (been lucky) Well my grandma died of cancer when I was 10, but that's it. Not in my adult life.

I guess I just want to show some good support. Help N. feel better, not isolated from her friends and from the life she knows a bit. I think it would be nice to keep her "in the loop". Anything else that a friend can do?

Any suggestions are welcome, thanks.:confused:

Prior to becoming a pediatrician I was a cancer nurse in a pediatric center. I don't know the current statistics, but your statistics are correct in that AML is a more agressive disease than the other leukemias. Hence, the therapy is pretty agressive. What happens after the rigors of diagnosis (zillions of scans, blood tests, bone marrow biopsies and just the agony of not knowing) is a phase of intense chemotherapy called "induction." Kids feel pretty lousy during this phase and just when they finish the first round and are starting to feel better, their white blood cell counts start to drop and they are at risk of infection. My point is early on, you might find yourself interacting more with her mom than the little girl. I think a great role that you could play is to serve as a liason between the girl and your daughter's friends, who are going to be worried about their friend and not sure what is going on. You can be the point person.

CHOP is part of a national cancer study group, so this child will be getting cutting edge treatment. A good place to start is to find out what her initial therapy will consist of. IV medications? Placement of a port for medications? Radiation? Spinal taps and medications? Her mom will have been thoroughly versed in all of this, and I would hazard a guess that she will actually welcome a chance to share the details with another caring mother. It also gives her a chance to talk about her daughter. Who among us doesn't love to talk about our kids? You will be the voice of reason amongst the kids when they see or hear things they don't understand, and assume the worst. For example, when she starts to lose hair or suddenly has to wear a mask everywhere.

As for how to interact with the daughter, let the kids figure it out. My fear is that if this little girl starts getting a lot of attention from people that she really didn't have a lot interaction with to begin with, it might seem scary. So no games or snacks. Start by making a brief visit with your daughter and offer your heart and ears to her mom. Offer and ask for an e-mail address. This way if you have news to share you can, without worrying about the rigors of the hospital day. I'm sure there will be days when they will want to throw the phone out of the window and lock the doors. And there will certainly be evenings when an exhausted mom will sit down at her computer and feel gratified by all the people who care and tidbits of interesting news that remind them that there is life waiting for her outside the hospital walls.

Its really lovely that you are thinking about how to best help this family! My hat's off to you. :)

Oh Rozie, that is so much more of an answer than I expected! Thank you.

I know another mom is more in contact with N's mom, and maybe she would be more suited to be the point person. I like the email idea, and I believe that N has an email address, so I will set up one for my daughter too so that she can contact her friend directly. I will get N's mom's email, to provide whatever I can. I mean, I was never in contact with her before this, so I don't want to all of a sudden pop up so concerned that I'm calling her now. I am concerned, very concerned, but I dont' want to overstep social bounds, you know? The other mom that I spoke to tonight, I'll call her Rose, told me to call her anytime for info, and I will. I feel comfortable calling her, I've had lots of interaction with her. In fact, my daughter is going home with her daughter on Friday, and I'll be picking them both up after work for a sleepover here. (I have joint shared physical custody of my daughter with her dad; the transition day is Fridays after school--she's a week here, then a week at her dad's, etc)

Today the school nurse and the school counsellor went into my daughter---oh she's Savvy, okay?!! haha--went into Savvy's classroom and spoke to them about it. I'll ask them what they learned on Friday. Maybe a paper was sent home, I'll check her homework folder for it. (her dad leaves things like that in, and so do I, so we both see them)

Thank you so much for your response, Rozie, I really appreciate it!

Oh and another mom I spoke to tonight mentioned that N will be having surgery, something about a tube??? Is that the port placement for meds?

You know, Waterfall, it nice to be able to offer advice about something I really do know about. I sure am not an expert on AG relationship!! ;)

Yes....I assume "the tube" is a permanent IV line. Some are under the skin (infusaports); some are really tubes that exit from the chest wall (broviacs). It stays in place so they always have access to her veins for medications and blood draws.

Waterfall, feel free to pm me if your daughter has questions or if you have any concerns about her. Despite this being an aggressive kind of leukemia, look at those statistics. The probablity is still in her favor and I know she is getting the best therapy possible. CHOP was in the same study group as the hospital I worked at as a children's cancer nurse. What this mean's is that they offer the best known therapy protocol but they might be testing what they hope to be an improvement. So kids will be randomized between "best therapy" and "maybe better therapy." If at any point during the collection of the data it appears that one therapy group is doing significantly better than the other, the kids are switched into the superior group. So part of me wonders if your statistics aren't a little gloomy. Kids as a group tend to do much better with ANY cancer than adults!!

thoughts and prayers for N

Thanks, christina!

(yes the tube is in her chest Rozie) I feel better with info, and I can pass it on to other moms.