One of my cousins has a 4-year-old who was diagnosed with bone cancer recently. The whole family is really upset, of course. They don’t live in the U.S. but are exploring possibilities for having him treated here. I don’t know any specifics yet other than the little guy has a tumor in his leg.
Any suggestions on how to explore treatment options? Other experiences that might help us navigate this? Recommendations for resources (boards, web sites, support organizations, anything else) to use or avoid?
I’d appreciate any experiences that the Teeming Millions could share.
My nephew was diagnosed with neuroblastoma when he was four. I don’t have any advice about medical treatment, etc., but something that has been very useful for the family has been Caring Bridge. It’s basically a free maintained blog, but presented in a very professional way. You can add entries to it so friends and families can keep updated as to treatment, progress, etc. Also, they can sign the guest book, so they feel like they’re doing something. I would highly recommend it, as well-wishers will phone wanting to know the status, and it’s really upsetting having to repeat things over and over. Instead you can just give them the address. (If you want my nephew’s page for your cousin to read through his history, just email me).
I’ve seen this up close and personal as I helped my sister care for her other children through the long treatments. My nephew is now 9, but there’s a strong chance of the cancer recurring.
I wish your cousin and her son all the best during this very difficult time.
One of the most famous children’s cancer hospitals is here in Tennessee. It is a research hospital and I don’t think it costs for the children to go there.
Also, if you read what it says, you can tell which link to click on to see which pediatric cancers it treats.
This hospital is in Memphis. I’m sure you can find other links to information about it if you Google for St. Jude’s Research Hospital, St. Jude’s Children’s Hospital or just St. Jude’s Hospital.
It was founded by entertainer Danny Thomas and has had incredible success!
You don’t have to be a Catholic either.
I hope that you find just the right place for this little one.
There are excellent cancer facilities in New York as well, like Sloan-Kettering. And there’s the Mayo Clinic in Minnesota. I’m not sure what advice I can give without knowing the specifics of what your nephew has, because once you know those you can find out who specializes in it and start finding some more specific options. If you can share those at some point, it might help. Meanwhile, here’s wishing the best to your cousinand your family.
This organization maintains almost 200 support groups conducted via mailing lists. They have lists for several specific types of pediatric cancers as well as general pediactric cancer lists on several topics.
I have used other lists they offer and they have been a marvelous resource. The list I used was not only good for venting and emotional support but for very specific information about specific doctors and treatment protocols.
I wuld recommend that your family members sign up early on and introduce themselves, the other list members can provide invaluable information when you are selecting doctors and treatments.
Best of luck and I will be pushing for the little guy.
I’ve done a bit of searching and had run across ACOR’s web site, but was wondering what kind of resource it is, Sound Mind.
Hadn’t thought about St. Jude, Zoe. Thanks for the suggestion.
I’ll share the specifics once I’ve got them, Marley. I’m also going to go back and read about some of your brother’s experiences to see if there’s anything that applies.
And the Caring Bridge suggestion is great, Blue Mood. We have an enormous family and at the moment we’re spread out across North and Central America, so having one place to do updates would be really handy.
I barely know the little guy, but he’s a lively and mischievous kid who looks a whole lot like his dad at that age. I’ll be seeing everyone this week because another cousin is getting married and will relay information and good wishes.
I know this is a really hard subject to talk about if you’ve had personal experience. My closest experience was a grade-school friend who developed cancer in high school. She was able to graduate, but didn’t live long after that. We weren’t particularly close, but I still think about her periodically and remember what she went through. And this is bringing back memories of her.
My family and I really appreciate the support and any other suggestions!
Please do. I could probably tell you a lot of things that aren’t in those threads as well. And if they do come here to explore or do the treatment, I believe there are organizations that help cover travel costs for the families of people with cancer, and they should look into that.
City of Hope has saved the lives of several of my loved ones.
And I will second the recommendation of Caring Bridge. Redfrost’s son had a page there and it allowed me to stay up to date on Matthew’s progress. It’s great for the parents, who don’t have to email the whole world every time something happens (or doesn’t).
Speaking of which, PM Redfrost for some real, concrete advice about this whole this.
I don’t have any advice or experience to offer, but wanted to send my good wishes to you and your family. It just seems so wrong that little ones have to go through stuff like this.
gt, where does your cousin live? The pediatric oncologist should be the best person to decide whether it’s best to treat the kid locally or, having resources for it, go abroad. Going to the other end of the world makes sense if and only if appropiate treatments are available “there” but not “here.”
I’m familiar with family-support systems in Spain but not in the US, sorry.
My cousin is in Mexico, Nava. I’m sure they’re working with a pediatric oncologist already; I don’t know if they’re exploring U.S. options at the doctor’s recommendation or on their own. There are several doctors in the extended family (none of them oncologists, AFAIK) who also may be lending their advice. I’ll know more once I’m there (late this evening - gotta pack!) :eek:.
I’ll be away for the next week, so I may not be posting regularly, but I’ll come back to the thread when I get home next Sunday.
If they do come to the US for treatment, chances are very good that there’s a Ronald McDonald House (http://rmhc.org/) nearby where the family can stay (and the child too, when he’s well enough) during treatment. The hospital should have contact info (I think you have to be referred by the hospital, you can’t just walk in and ask for a spot).
I have no practical advice for you, but I can share a story that may help keep things in perspective. I knew a kid who was diagnosed with bone cancer in his leg when he was about 12. He had some kind of major surgery that resulted in him being on crutches for months. He made a complete recovery and went on to be a high school athlete. And this was 30 years ago, when cancer treatments were much less successful. So anything can happen.