Melanoma Resources
If you are anything like I was when I first found out that my daughter has cancer, I was desperate for information but terrified to find it.
In my first post on this blog I wrote:
Rachael has “at least” stage 3 melanoma. They found cells in the lymph nodes. So that sounds really horrible and if one were to spend a lot of time Googling, one might end up in a puddle quivering under her computer table but one has studiously avoided Google so one will simply tell what the doctors said. Which is much more encouraging than I understand Google is. Google does not give hugs and say, “You will be okay”. Google is like that mean woman at work who actually tells you that you do look fat because you were stupid enough to ask. The best way to deal with her is avoid her and certainly don’t ask her questions you don’t want to hear the answers to.
So I understand that you don’t want to be scared but I know that you also want a place you can ask questions and be supported and encouraged. For that reason I am not going to list a dozen sites and overwhelm you.
These are the places I found myself drawn to in the beginning. For more in depth discussion about what you can expect, choices you may face, and other possibly more scary topics, please visit the Frequently Asked Questions.
MESSAGE BOARDS
These are truly fantastic resources because you can ask a question and then knowledgeable, caring people will answer your question. BEWARE: The language of melanoma is extremely confusing and much of what you read on the boards will not apply to a child. We don’t really know why yet, but children before puberty do better than adults. If your oncologist has given you a good prognosis and said that your child will most likely grow old, believe him or her. So if you can get past stories of adults facing decisions at Stage IV of this disease then these places can be truly encouraging sources of information.
Melanoma Research Foundation’s Bulletin Board
Melanoma International Foundation’s Bulletin Board
JOURNAL ARTICLE
This article is from the July 2009 edition of Cancer Control and specifically discusses Pediatric Melanoma. It is long (9 pages), confusing and sometimes scary sounding. So why include it? Because I pored over in the beginning and started to understand and feel a little less in the dark. It is a rare article about a rare disease and it is worth looking at.
CLOTHING
This is my go-to company for Rachael’s hats and swimwear. They have allowed us to continue living our lives while living in South Texas.
I hate to share this story but once my family went to the pool where we spent about four hours in the sun. I applied sunscreen well before we actually got in the sun and then re-applied four more times while we were there. Please understand how much this next sentence pains me, as it’s coming from someone who KNOWS the dangers of the sun.
Despite our liberal application of sunscreen, we all got a pretty serious sunburn. Everyone that is, EXCEPT Rachael, who was wearing her special swimsuit and hat. I love this company.
ACCOMMODATIONS NEAR HOSPITALS
I never thought that I would stay in a Ronald McDonald House. I always associated them with those bins in parking lots where people could drop their old clothes and for some reason had it stuck in my mind that they would be beat up ramshackle places only really destitute people would stay in.
Um. How to put this delicately? That was REALLY stupid and completely wrong!
Our stay in the Ronald McDonald House was a highlight among many lows. Each RMH is a bit different but I strongly encourage you to check it out if you find yourself needing to stay near a hospital and far from home at some point.
DREAMS COME TRUE
If you are like me, you associated Make-A-Wish with a dying child. The truth is, any child who is diagnosed with cancer before the age of 18 is eligible for a wish. There are a lot of horrible things that go along with melanoma. Allow your child to experience the amazing things too. You can read about how Rachael got to make her wish here.
If you have another resource that you have found invaluable please contact me at dkadams73@hotmail.com and I will consider adding it.
