My daughter [name]Star[/name] has just been diagnosed with ALL and we have just started on the first round of chemo. She’s a very sick little girl at the moment. I was just wondering if anyone has any experience of this or knows of anyone who has been through it. We’ve been told there is an 85-90% cure rate on this type of leukaemia but it would be nice to have a little heads up on anything anyone has found that helps them feel better at any particular stage.
There are probably online support groups specifically geared towards families of sick children. If you don’t find anyone on here that’s been through similar circumstances, I’d recommend searching for those sites. (I’m not trying to shoo you away, just not sure how common it is and/or if anyone on here has been through it.)
Agree with [name]Alex[/name] completely. And you are right-- ALL has an excellent cure rate (complete cure) nowadays. No one would ever, ever want their child to have cancer but if you have to choose, ALL has the best prognosis.
I would say, if you haven’t already initiated treatment, to choose the best possible hospital for her care-- preferably a dedicated academic children’s hospital.
I have no advice or help to give, but I wish you the best and pray for your daughter. Children are strong, and she will survive this as a very brave little girl.
I am a pediatric oncology nurse so hopefully I can give you some insight. I’m sure as you know Leukemia is a long process. I’ve mostly dealt with osteosarcoma but there are many kids with leukemia at our hospital. Benadryl helps a lot of kids. It’s a anti nausea medicine for chemo induced nausea(most people don’t know this.) it helps them sleep through the nausea. Also, Ativan and Zofran help with nausea. Phenergan can work for nausea as well. Drinking a lot of fluids and taking things like senna and colace will help keep things moving. If she’s getting Methotrexate, she may get mouth sores which will make it hard to eat. Keep flavor ice and Italian ice on hand. [name]Don[/name]'t eat at buffets because of germs, wash and rewash fruits and veggies, make sure meat is thoroughly cooked. Try not to eat ice cream from places like McDonalds, etc. because they do not clean machines and its a bacteria feeding site. Also, don’t isolate her from friends and normal experiences if she’s up to doing it. But if her counts are low she needs to wear a mask.
I’m so sorry you and your family are dealing with this. Although, you’ll find it makes your family very close
I am so sorry that you have to go through this difficult time. Best wishes and I hope from the bottom of my heart that your daughter gets better soon!
The only advice I know enough about to give is to make sure that she never feels alone and that her family will always be there for her, which of course it will. Illness, especially cancer, is a terrible thing, but it does have a way of bringing people closer together. [name]One[/name] of our family friends has a three year old daughter with neuroblastoma, which is a very severe form of cancer, and they live in a townhouse complex where they didn’t really socialize with the other people. But when the other residents heard about the little girl and how her (single) mother had to be at the hospital with her constantly with very little time for her other two children, everyone in the complex immediately rallied to their aid, despite barely having spoken to the family before.
Again, my best hopes and prayers to your family, and I do feel that the best thing you can do for her emotionally is to have her know how much her family loves her and that they are supporting her all the way.
I highly recommend CaringBridge. It would require you to create a website in order to share updates about your daughter’s treatment and progress, but the CaringBridge community is excellent and so, so supportive. You’ll find many parents of children with cancer with whom you can connect with.
I’m so sorry about your daughter’s diagnosis, and I wish your family all the best on this journey.
Speaking from experience, I can tell you that this certainly isn’t true in most cases. MOST restaurants do clean their machines daily (as they’re required to).
Anyways, I wish you and your daughter all the best, [name]Caoimhe[/name]. I hope she gets well soon!
ETA: CaringBridge is a great site! A friend of a friend used it for her son and had nothing but positive things to say about it!
My Mom was diagnosed with ALL in 2010. And it’s true, it’s more treatable in children than adults. My Mom is (so far) a success story. She had a stem cell transplant in 2011. Was doing great for over a year, and then it reappeared in her elbow. Radiation fixed that too.
I know that it’s different with kids, but my mom used Ativan and the Benadryl… but the Chemo was more toxic than helpful. she was healthier not on it - hence the transplant.
Good luck to your family. I am sending positive thoughts your way!
Thankyou for all the comments, you guys are a wonderful if invisible support. The ice lolly tip was a very good one - that really has helped, we have a freezer full of them! I am pleased to report that she was in full remission in just short of 4 weeks and has remained there so far. Her doctors seem to be being less severe and more smiley when they discuss it with me now so feeling pretty hopeful. C x
[name]Caoimhe[/name], I’m so happy to hear that your daughter is done with chemo, and that’s she’s in remission! You must be relieved to be on the other side - no kid should have to go through that. Sending out good wishes for you.
Thankyou all. We’re not done with chemo yet unfortunately - we’re past the induction phases and have just started on at least a years worth of maintenance treatment so worst part over - keeping fingers/toes/everything else crossed. I’ll have a look at CaringBridge - thanks again. C x