Saturday, May 12, 2012

Love Letters....

I began this post writing about what it means to be a mother. What it means to have such a fierce love for your children that you would literally lay down your life for them.  How a mother is the glue that holds the family together. Those things all hold true for me, but my post just wasn’t clicking. Instead, I want to write what I’ve been thinking about for the last few days, even before I thought about Mother’s Day.

This post is going to be Love Letters. Love Letters to my four children.

Dear Jonathan,
You are 29 years old now. I was 23 years old when you were born. I had no clue what I was doing when you came into the world. But I had Dr. Spock. By the time you reached one year old, that book was torn, tattered, and water stained from reading it over and over again. As a baby and throughout your childhood you were always so happy and full of energy. You still have same energy today, along with your positive attitude. You bring that joy with you wherever you go. Your energy is contagious, and people are drawn to you. You are strong, and you are loyal.   I am proud of the man you have become.

Dear Joshua
You are 26 years old now. I’ve told you this before, but when I was pregnant for you, I was so concerned that I wouldn’t be a good mother to you. I was afraid that I wouldn’t have enough love in my heart to properly give to another child. One child took so much time and energy, I didn’t understand how I could possibly be the mother I wanted to be to you. I need not have worried. From the moment you were born, you had my heart, as well as everyone around you. You were a quiet, gentle child, and so innocent, and loving.  And today, my heart aches with pride as I see you with your own children. You show the same gentleness that you had as a young boy to your own children. You are a wonderful father, and I am so very proud of you.

Dear Jillian,
You are 22 years old now. How excited I was when I had that little girl. I had visions of bows, pink dresses, dolls…all things girly. It took about a minute for you to let me know that you had ideas of your own. The pink ribbons, bows, and dresses were replaced with your brother’s shorts, high top shoes and a ball. Always a ball. We nicknamed you Jumpin Jilly Bean because you were so full of life.  You were a force to be reckoned with, and you still are. You are faced today with the challenge of a life time, and you are showing everyone around you what a hero looks like. I am so very proud of you

Dear Jenni,
My precious bug. You are 19 now. I would have to say you were the happiest of all the kids, and the easiest.  You never complained about anything. You were happy to be home, happy to be traveling to various sporting events. Just happy to be with us.  You were always such a sweet child too. You have grown up to be such an independent and responsible young adult. You have such a good head on your shoulders. I know that whatever life’s challenges may present, you will handle it head on with grace and strength. I am so very proud of you.

There has been no greater gift to me, than that of you,my children. I have been blessed with the opportunity to be a part of your lives. To share in your successes, to share in your failures. To share in your happiness, and in your sadness. And to love unconditionally.


Friday, May 11, 2012

"Chancy Pants is Famous" !

It’s quiet now, with only my sweet companion Annie sitting on the chair beside me. As I reflect on the events of the past week, I struggle with the words to accurately describe what I’m feeling on this night.

After my previous post, “Melanoma Cancer Awareness Month”, I have been overwhelmed by the generosity and outpouring of donation's, love, hope, and encouragement toward the billboard project. Not only have we received monetary donations, I received a donation for a billboard. One of my friends, and co-worker‘s husband works for a local billboard company. She contacted the general manager, who happens to be a friend as well, and told him Jillian’s story, and explained what we trying to do for Melanoma Cancer Awareness Month. Within an hour, I received an email asking me what I wanted on the billboard. Today I was informed that the billboard would be up today at various locations across Grand Rapids.

So, this evening, with my parents, kids and grandkids in tow, we took off to see our billboard. I cannot explain what it felt like to be driving along I-96, in a caravan of three vehicles, to look to my left and see my daughters lovely face all lit up for the world to see. My throat tightened, and I felt the familiar sting of tears forming. Jenni was sitting next to me and looked at me like I was a mad woman, so I pulled myself together. Just for her.

We had to drive past the billboard and get off at the next exit and turn back around. My heart was pounding as we approached the area where the billboard is on display. All three vehicles had their flashers on, as we pulled over to the side of the highway and got out with our cameras. I’m sure we turned a few heads as we all posed for pictures beneath our Jillian’s billboard.  Good. Just one more person who may get the message this night.

Jillian’s Journey with Melanoma – A Mother’s Story is not just the story of Jillian, myself, and the rest of our family as we navigate through the maze of Cancer. It is a community’s story. It is a story of love, and hope. It’s a story that can reveal the strength and power of our community coming together as we support one of our own. Like Reverend Carol has told us,we are Angels For Each Other.

In case you are wondering, we have another billboard in the works that should be done tomorrow and up on Monday. This billboard will be the background for a project we are working on as we reveal The Faces of Melanoma. We will not only be heard…we will be seen.

Yes, we will. We WILL!

In gratitude and Peace,

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).

Tuesday, May 1, 2012

The Face of Stage IV Melanoma Cancer- The Beast Lurking Within

Now that I’m all grown up, and have finally figured out what I want to be, my thoughts are constantly on the prize. That prize for me is to raise Melanoma Cancer Awareness so high, that Melanoma becomes a household word. That’s my desire. I want to see black ribbons on my garbage cans. I want there to be a line of beautiful North Face jackets with that same black ribbon. I want to see Burton snowboards carry the ribbon. I want it displayed on all things young and fun. I want Melanoma Cancer to be so well known, that the current upswing in melanoma is drastically reduced. I want our beautiful young people to RUN from tanning beds. You can roll your eyes if you want to, I can do what I want. After all, I’m fifty now.

Yesterday we spent the day at U of M while Jillian had a CT scan, and a brain MRI. We will travel back again tomorrow to go over the results with our Dr., and possibly begin another round of Yervoy in combination with the drug Zelboraf, which she has been on the last four months. We were talking about this combination of drugs in the car during our drive to U of M. I mentioned that she would be one of three patients currently on this combined treatment. “Go Jill”!!, I said. She replies, “Yea, me”.

 Damn. “yea, me” indeed. I turn to my daughter sitting in the back seat. Looking at her, you would have no idea she has cancer. She looks healthy. She IS healthy, and young. Except for this one thing. Melanoma Cancer. It was a fluke that her Dr. ordered a PET scan one year after the mole on her back came back positive for melanoma. That area around the mole that had been excised, along with two lymph nodes, came back showing clear margins. We had NO idea that she had a tumor on her liver, two on her lungs, and several on her brain. This is how Melanoma Cancer works. It is the beast lurking within. You may not even know you have it. The doctor’s decision to order that scan has most likely saved Jillian’s life.

Our lives have become one with cancer. This drive to U of M every 4 weeks, or whatever the current treatment plan is, is just part of it. In the meantime, Jillian continues to plow through her life as she goes through her day to day activities. She runs every day. And you won’t hear her complain.

So this month, during Melanoma Cancer Awareness Month, while college graduation parties are being planned, while teenagers go to their proms, while seniors plan their graduation open houses,  while brides- to- be plan their weddings..while Jillian fights her battle….I’ll be planning the next way in which I can raise awareness to the Beast that Lurks within. I can do that. I WILL do that. 

Love and hugs, and ton’s of blessings!