Friday, May 4, 2012

May is Melanoma Cancer Awareness Month

We just heard from the neurosurgeon at U of M. After reading her scans, it has been determined that the swelling of the ventricles in Jillian's brain doesn't warrant a shunt immediately. We will need to watch for any symptoms...headaches that are stronger than usual, or won't go away with meds. Confusion, fatigue. Anything that seems unusual. We will be scheduling an appointment in three weeks at the same time as her scheduled appointment with Dr. Lao for her follow up and next infusion. We will know at that time if the increased dosage of steroids are working.

 May is Melanoma Cancer Awareness Month 

 Several of Jillian’s supporters on this blog are not on Face book, so I wanted to share with you some things that are going on in the Melanoma Community. Face book for me has become an avenue where I try to raise Melanoma Cancer Awareness. I have a Face book Page set up called Jilly’s Jems. I post educational articles and tips on how to prevent melanoma cancer, and to try and educate our young people about the dangers of tanning beds. I also have a blog where I write about how it it feels as a mother dealing with a child that has cancer.

 My fellow melanoma warriors have been very busy this month trying to raise awareness. There have been interviews with melanoma warriors on national news stations and programs, postings of scars. One beautiful lady I “met” is honoring a different Melanoma Warrior every day of the month. Yesterday she featured Jillian. Jillian has been on blogs, status updates, the list goes on and on. I, myself, was even honored that day by a "mole mate"on his blog, Hotel Melanoma. He titled me “Mama Bear”, which I suppose fits :)

 On our way home from U of M the other night, a couple of things happened. I believe I mentioned before that I feel that God talks to me. While sitting in the front seat of the car, after dropping Jillian and Steve off, I settled in for the hour ride home. Tears were streaming down my face, silent tears. The thought that popped into my head was, “tough as nails”. I saw in my mind’s eye, an image of nails. Not the sort of nails that you buy at the hardware store. The big, thick, nails that look like nickel. I think they were the type of nails my dad used when he was shoeing horses. It wasn’t Jillian that I was thinking of when the nail image popped into my head, it was me. I know I am in a sense, ” tough as nails”, but certainly not on the inside. Anyway, my tears stopped, I collected myself and began to get ticked off. Then I tried to listen to what God was telling me.

 My anger , and my helplessnes of not being able to fix Jillian’s diagnosis, has been the motivation for my non-profit organization, Jilly’s Jems. I needed to do something positive in an otherwise negative situation. Recently I started a group on Face book called, Melanoma Cancer Awareness- Making a difference. We throw out different ideas, vote on them as a group, and then execute them. Last week we had a letter writing campaign going out to several ABC news stations for a story idea relating to melanoma. This week, there have been several ideas posted, but we haven’t voted on any yet.

 One thing that I would really like to do it to have a billboard set up along the highway with the following statement: Melanoma Cancer Awareness Skin Cancer IS Cancer And then have a big black ribbon displayed. Something simple, yet bold. I have contacted a couple of news stations asking them to cover this story, but so far no one has called me back. That is okay though, my son Jonathan has a video recorder on this phone. Then I would like to post the recording on face book and YouTube. This not only helps “Mama Bear” harness some of her anger into something positive, but it helps Jillian to know that so many people are out there supporting her and trying to make a difference by raising awareness.

 My goal with these projects is to have Melanoma Cancer become a household word. I’ve talked with a company that would do this, and the cost would be half price since I am a non-profit, but it is still $1650. The billboard will run for 4 weeks. Since the billboard is digital, it will be moved several times a week which will make the sign more visible. ( Eight locations I believe).

 I am asking if anyone here is interested in donating to this project. No amount is too small, and every dollar you donate is tax deductible. If this is something you are willing to be a part of, please go to the donate the top of the blog. There is an area where you can write a small note referencing “Melanoma Cancer Awareness- Making A Difference”.

 As you drive down US 131 and M6, you will actually be able to “see “your donation , and know that you have been a part of helping to make Melanoma Cancer a household word. Thank you from the bottom of our hearts,Sue, and Jillian ( yes, Jillian read this and approves).


  1. I'm a new follower. You have made a very beautiful blog for your daughter! I am looking forward to reading some of your past posts. I will be keeping her in my prayers.

    If you're interested
    Here is my aunt's melanoma blog:

    And my blog:

  2. This is such a cool idea. try to partner with some of the thought leaders in melanoma!