Sunday, December 30, 2012

Jillian Marie Hayes-Wagner 9/24/89-12/29/12







































Friends,

With deep sadness, and a broken heart I tell you that on December 29, 2012 at 7:30 am,  Jillian Marie Hayes-Wagner completed her work here on Earth.

She was surrounded by family constantly during the last weeks here, and on her last day, just as I was here for her first breath of life, I was holding her hand telling her how much I love her as she took her last . Her husband Steve was also holding her,as he has never left her side.

Thank you all for the loving support you have shown us these last two years. They do make a difference.

The next few days will be busy making preparations for her Celebration of Life. We are entering a new beginning on Jillian's Journey with Melanoma- A Mother's Story.

More later.

Peace~


Sunday, December 23, 2012

That's Why I Pray....

“This world keeps spinning faster, to a new disaster, so I run to you”…..

“I’d go back to December all the time”…. 

“I’m begging for forgiveness, I want to make a difference, even in the smallest way.
 I’m  only one person, but I can feel it working, I believe in better days…
I Believe in better Days”.

Listening to Pandora and reflecting while the music washes over me. The songs have sparked thoughts that have been circling for a few days now. It would take several posts to reveal all of them. Another time.

Christmas is upon us. Normally I have all of my shopping done well in advance. This year however, I have not stepped foot in a store, or a mall. In fact, I haven’t left this house since we took Jillian home from the hospital almost four weeks ago. My focus has been on Jillian and my family. At first I felt guilty. I expressed my concern to my kids, but they just scoffed at me and assured me it didn’t matter if I bought gifts this year. It just wasn’t important. And they are right. We already have our gifts. The gift of family, the gift of love. Tonight, when you tuck those precious kids in bed, celebrate your gifts. Cherish them, protect them. Love them unconditionally.

Yesterday morning I was lying in bed with Jillian, holding her hand while she slept. She has been sleeping most of the time now, waking up occasionally for her medications, maybe some food, and something to drink. She isn’t talking much. I think it just takes too much effort. But even with her eyes closed , I know she is aware of what is going on around her. She nods or smiles when we are talking. That cocky half grin she has. So cute. And sneaky. J                        
Lying beside her, I listen to her breathe. I watch as her chest rises and falls. I look at her precious face as I stroke back her hair.  She looks so peaceful. I am filled with so much love for her, and the silent tears fall from my face.

Things are spinning fast, and I can’t stop this roller coaster of Melanoma Cancer for her. I think back to when we were in the hospital and the doctor told us that the treatments weren’t working. When we were hit with the reality of coming home with Hospice care. I will never forget Jillian, with tears streaming down her face saying, “ I just want things like they were, I just want things like they were”. And my choked reply, “I know sweetie. So do I. But they won’t be the same. You’re tumors are growing. Things aren’t the same”.

Life is never the same. Things are constantly changing in our broken world. We do have choices though. We can choose to let life break us, or we can chose to live. I know what Jillian would do. And to honor her life, her fight, and the fight of so many others currently waging their own Black war, I will keep my promise. I will try and make a difference so we can all see better days. Because I believe.

Love and Peace~

Monday, December 17, 2012

Connecting the Dots~ Part I

Since September, when we received the news from our oncologist at U of M that Jillian’s tumors were growing, I have been really taking a good look at my life. I feel as if all the experiences I've had in my life have been preparing me for this time. Right now.

When I was newly married to Jillian’s dad, my best friend was diagnosed with Hodgkin’s disease. At the time, cancer wasn’t something that happened frequently, especially to young people. At least not in my secluded world.

 Debbie fought the disease for two years. After she died, I felt so alone. Her parents were dealing with their own grief. I didn’t have anyone to talk to really. I had other friends, but what I really needed was time with her family. I still needed to be connected to her somehow. I wanted to go through pictures of her with them. I wanted to laugh about the time we all drove back from Florida and her younger brother threw up in the hat we won at Disney World. I wanted to cry with them, laugh together. I just needed to share. I am convinced that if I had more opportunity to talk and grieve with them, I would have handled the loss of my best friend a little easier. As it was, it took me ten years to think of her without crying. I STILL think about her every day.

I have been receiving so many heartfelt messages from Jillian’s friends. I know they are struggling with losing their friend, classmate, and team mate and trying to make sense of it all. Several friends are using Jillian’s page, "Jillian Hayes- Fall Seven Times, Stand Up Eight" as a place to remember and to share and to post photo's. Many have lost friends recently,and it is frightening to face their own mortality when they lose one of their own.

Because of my own experience, I want to make myself available to whoever needs to get in touch with me. Message me on the page, text me if you want. Plan time to come see me so we can talk if you’d like. For those that know Jillian, she would want this.:)

This is just one of the dot’s that have been connected for me. The others can wait for another day to write about.

Love and peace~

Saturday, December 8, 2012

When Tragedy Strikes....

Tragedy can strike at any time and to anyone. It can disguise itself in many different ways. It can be a loss of a parent, a sibling, spouse or a friend. Or a child.  It can be the breakup of a relationship, or the loss of a job. Either way, when tragedy strikes, it can be crippling.


Watching my child decline a little bit each day, knowing the end is near,  is the hardest thing I’ll ever have to endure. Nothing can compare. Ever. Watching Jillian cry as she understands exactly what is happening  to her, and that I can’t fix it, is devastating to my heart.

I just got done reading some of the face book posts that people have been putting on her wall and on the face book page I created for her, Jillian Hayes- Fall Seven Times, Stand Up Eight. Tears slowly slid down her face as I read the beautiful, heartfelt letters from friends, schoolmates and soccer teammates. It is frustrating for me because I cannot get into her head. I still cannot wrap my arms around the reality she is dealing with now, facing her own death. I just tears me up inside. I can’t make this go away like a mama should be able to. All I can do is love her through it and to assure that she has made a huge difference in everyone she has touched in her short, interrupted life. And how much I love her, and how proud I am of her.

When I finished reading all the posts from her friends, I asked her if she wanted to hear what I wrote for her. She nodded her head yes. I am happy that I got the chance to tell her once again how special she is to me, and what she means to me. I’m happy that I was able to tell her about her Grandpa’s promise to me before he died and that he is waiting to greet her with open arms when she gets to heaven.

Before tragedy strikes you or your family, if you have words that are unspoken to someone who is special to you, say them now.

Here are some of the things I read to her today. Words to Jillian from her mama.

This hurts Jillian. From the moment you were born into this world twenty three years ago, you have been teaching me and everyone around you what it means to live. As a child you had such a zest for life, which continued on as you became a young adult. You are a magnet. Others are just naturally drawn into your light. That inner light grew brighter with each passing day, gently touching people where ever you went.

Just as your life was getting started, you were given the most difficult challenge any young person could face. And like any challenge on the soccer field, you took this one on with fierce determination and courage.

You, my daughter, have been my precious gift. You have taught me what it means to Stand. To be able to see joy, love and laughter in the middle of so much strife. You have inspired me and so many people throughout your melanoma cancer journey. People from all over the world know your story, and you have given them Hope when they couldn’t find it themselves.  I am so proud of you sweetie and so incredibly blessed to have been your mama.

So now, that light that is you will shine on within us. It will burn brightly and pass from one person to the next, spreading joy and love and laughter. There is no stopping it.

Your job here on Earth is almost complete. I promise you that I will pick up where you left off, shining your light for all to see. I will make you proud,

Well done sweetie, well done.

Peace~

Thursday, December 6, 2012

And the Greatest of These.....


So we weaving down a new unchartered course on Jillian’s Journey. It has been a long, winding road with many, many, twists and turns. I won’t lie. This whole thing just absolutely sucks. Watching someone that you love, especially a child, declining a little each day is heart wrenching. No, it’s worse than heart wrenching. It’s devastating. And it could even be crippling for some.

I wanted to share one thought with you today. Love.  I have learned more about love on this Cancer road than I ever would have imagined possible. The love for family. The love between two young people as they learn to live with this horrific disease. The love for siblings, the love for parents. The love shown to us through friends. The way my family has stuck together and supported each other every single step of the way, even when we weren’t always so loveable.
We still have more pavement to cover, but  I know without a doubt that this family will have no regrets.

I must be the luckiest mama bear alive.

Peace~

Wednesday, November 28, 2012

Just a Little Diddy.......

Monday. The day started out like any other Monday. Only on this Monday our journey with melanoma took another turn down the cancer road.  When I picked Jillian up from Steve’s office, it was quite obvious that there had been changes since I’d last seen her. She was with Steve’s family over the Thanksgiving weekend so  I hadn’t seen her since last Wednesday. She was having a real difficult time walking. In fact, Steve had to carry her into my truck. Once Jillian was settled, we took off for our weekly Monday blood draw and of course breakfast.


Jillian and I have become “regulars” at a local breakfast restaurant. She looks forward each day to her egg and bagel. I look forward to my cup of coffee, and our morning chat. I knew it would be difficult getting her in and out of the truck that morning so I asked Jillian if she wanted to use the wheelchair this time, or to try walking. I suppose you can guess which option she chose. Walk. Okay then. Let’s walk. By now, I know enough about my daughter not to try and change her mind. Another thing  I  never want to do is to take away any sense of independence she still has. As difficult as walking has been these last few weeks, she never stops wanting to try. It doesn’t stop her from doing much, it just takes longer and with greater effort.

When I got her out of the truck, I knew within two steps that we weren’t going to make it. The left side was just too weak to support her weight. So, as she was standing against the truck, I walked back to get the wheelchair. I didn’t get far before she crumpled to the ground. It happened in slow motion. She just sort of folded into herself.  I rushed to her side to help her up, only she wasn’t going anywhere. Her eyes were fixed and staring into space. Just blank and open. She wasn’t with me. I rushed into the restaurant and had one of the waitress’s call 911. Several people came outside to help, to bring blankets to cover her up. In what seemed like a lifetime, Jillian came around. It took her a few minutes before she was fully with it, but I was never so happy as I was in that moment to see her talking and joking with the EMT.

While in emergency, Jillian had a CT scan of her brain which showed that there was change. The tumor looked larger, and there seemed to be swelling and bleeding. Jillian was admitted into the hospital so we could find out what what was going on. She had an MRI that evening which would show us a clearer picture. Which it did. It confirmed that Jillian’s tumor was indeed larger, that it had shifted, and that there was swelling and bleeding. And then we got the words that no mother ever wants to hear. “The chemo isn’t doing enough. I’m sorry, but I know you have talked with Dr. Lao about this possibility when you were at U of M last September.

These are difficult......................................................................................................"

White noise. NO. It has to be working. This is my Jillian. We fight, we try something else. Just fix this. Shit.

I can’t really remember everything after that except that Steve was on one side of Jillian’s bed, I was on the other and Steve and I were holding hands. As a mama, you’d think it was me giving him support. But it wasn’t. I was reaching out to him for support, and he gave it.

This is where the content of my story changes. Last night while I was writing this post, my mind closed after the first few paragraphs. I was tired and exhausted and the thoughts and words weren’t coming. So I put down my computer and went to sleep. My bed felt pretty good after the night in the hospital on that hard couch. I woke up with that O' so familiar nagging feeling that what I was writing about wasn’t what God needed me to say just yet. So with my eyes not even open yet, with tears running down my face, I listen. I’m hoping that the kids won’t mind.

Jillian and Steve met over four years ago. Jillian was 19, Steve was 20. He was there with Jillian that day when we first heard from our primary doctor, “I’m sorry to tell you this, but you have melanoma. It’s Cancer”. I can remember the doctor talking and explaining what we needed to do. A surgery to excise the area around the mole that had been removed from her back, along with two sentinel lymph nodes ….check up’s every three months. The pet scan that was miraculously scheduled one year later which plopped us right square in the middle of nowhere; inside the belly of the sneaky black beast. Stage IV melanoma.

Four years later Jillian and Steve are still together. Some may think that a young kid at twenty would run for the hills, but this young man has stayed and loved and supported Jillian through all of her treatments. Through the tears and everything in between. He is still here. And believe me, it hasn’t been easy. He has had to deal with appointments back and forth to U of M, while juggling his own college schedule, plus a full time job. And mama bear. But he is still here.

Can you look back to where you were at the age of twenty? Or if you are around that age, what are you doing? Do you picture yourself caring for someone that has cancer? Do you even know what it means when you hear someone is a caregiver to a person with cancer? Do you think about what it’s like to have no use of your left side? It means helping that person to get in and out of bed. It means help with getting dressed in the morning. Sorting and dishing out meds. Preparing and cutting up food for a meal. Bathroom needs, hygiene. Think about it. This young man has seen more than most of us will see in their lifetime. He knows the meaning of commitment. He is still here. I know his own mama bear is proud.

Two weeks ago, after Jillian’s last chemo treatment that Friday, I dropped her off to Steve after being at my house all week. They hadn’t seen each other since Monday. I saw the pure joy in his eyes when he saw her. I saw the love. There was no disguising it.  It reminded me of a time a while ago when Jillian and I were driving somewhere last year. The song” Jack and Diane” was playing on the radio. She turns to me, smiles and says, “That’s me and Steve. Just two poor college kids”.

Jillian is now back home with me with Hospice care. Steve has moved in and we will work out the details as they come up. Their other roommates and friends, Tia and Jared, are staying off and on too as their schedules permit. That makes 6 dogs in the house. Six BIG dogs. But what’s a little hair?  For now, Steve and my family are making it work. Team Jillian.

I’ll post more about my thoughts as a mama, but for today…

Just a little diddy about Steve and Jillian……..

Love~

Wednesday, November 21, 2012

Thankfully Thankful...

Last evening I had dinner with an old friend of mine. Rhonda and I met over 12 years ago. In fact, it was because of her that I am currently working with the company I’ve been with these past 12 years. I always enjoy my time with her. Rhonda has a depth about her, an understanding of the human spirit that inspires me along with a real yearning to learn as much as she can about people, and herself. As we were talking last evening, she brought up the losses of the last year.

 My past, my present, and my future.

 My Past: It’s been hard living with absence of my dad. Vern was a strong man. A man’s man, a family man. I miss him, I miss his presence. I could talk to my dad, and it didn’t matter what we discussed, his support of me was unconditional. I miss that. I miss that I was so special in someone else’s eyes ,that it didn’t matter if I was right or wrong. I was his daughter and he loved me in spite of me. The love of a parent towards their child is one that is sacred and needs no explanation.

 My Present: This past year has been a difficult one for Jillian, especially the last few months. Since August she has lost all use of her left arm due to the significant growth of the tumor in her brain. She is now experiencing the same weakness/loss in her left leg. Walking has been a challenge for her, but one she tackles every single day. We joke about her “shuffle” when getting around obstacles. When I help her in and out of my truck I get the playful comment, “Mama Bear miss my hugs”? Jillian’s humor and grace is evident in everything she does.

My Future: My family has lost its innocence in everyday living. We will always walk with cancer as our companion. Although none of us know what the future holds, and there is always fear and uncertainty, maybe it’s not such a loss after all. Perhaps it’s a blessing and an opportunity to share and to give hope and encouragement to those who are experiencing similar trials. Yes, that’s how I’m choosing to look at my future.

As we prepare for Thanksgiving , we reflect on the things that we are thankful for. I am thankful for having strong, loving parents. For giving me the foundation of love and support that I have been able to draw from through these many hurdles. I am thankful that my children have experienced the love and joy only a grandparent can give them. To show them good role models and to learn what it means to be loving, selfless parents.
 
I am thankful that I have been given the opportunity and the privilege to walk through this cancer journey with Jillian and the rest of my family. It has opened my eyes wide with wonder and amazement at the human spirit, the resilience and the grace of one strong warrior. It has shown me what is truly important in life, in relationships. And what isn’t.

I think what I’m the most thankful for this year is the gift to be able to feel God ‘s presence through it all, and the faith that He will continue to be there for us in all His Glory. Some days I get a glimpse into His window.

My past, my present, and my future.

 I like what I see.

 Happy Thanksgiving!

 Peace~

Thursday, November 1, 2012

I Acknowledge You...

It’s quiet now, except for Pandora playing softly on my computer. I love this time of day where I can be still and listen. And I’m not talking about my music. But as I’m listening to the” shuffle” playing, I think, “When was the last time I just quieted my mind and  enjoyed my music”? I really can’t remember when. Is this what God is trying to tell me? No, it goes deeper than that.


I started writing this blog earlier this evening, and deleted everything I’d written. I was writing about Cancer and the words a person associates with cancer,along with their definitions. Chemotherapy, Scans, Tumors, Surgeries, Radiation…and the list goes on ....

Before our lives took this unexpected detour, I knew several people over the years that had cancer. But did I really? I don’t think I knew them at all. At least not their core, not their innermost self.

My best friend died of Hodgkin’s disease at the age of 23. I was 24 at the time, and very busy with my oldest son. It took me 10 years before I could think of Debbie without feeling that thick knot form in my throat. I didn't have anyone to talk to about it. No one who would just listen to how I felt. Her family was too busy dealing with their own grief to give me consideration. Not their fault. It was just that way. But as I look back now, over 20 years later, I wonder how much did I know about Debbie’s struggle? She was my best friend. I’m supposed to know these things.

Did I ever think what it must have been like for her to have been given the initial diagnosis…”you have cancer”. Did I realize her fear? I didn't begin to understand the thoughts she must have been dealing with at the time. Why me? I’m only 21, I have my whole life in front of me. Fear.

And then the treatments. She had several surgeries as the tumors continued to pop up inside her body. After surgery to remove those tumors, she had chemotherapy. And oh, was she sick. But did I realize what sick meant? Did I picture in my mind how her stomach was cramping up, how she tried to fly to the bathroom before vomiting all over her bed? Did I picture her kneeling over the toilet on the cold tile, with her hair caked with vomit as she heaved and heaved until the only thing left was acid bile? And how weak and utterly spent she was. No. I did not.

Debbie’s fight against cancer lasted two years. I didn't grasp the days in between treatments where that nagging C word followed her everywhere she went. I didn't understand what it meant when she told me she was going the hospital for more scans. The fear. The dry mouth as you are waiting for your name to be called into the Dr. office to discuss the results. Ugh. Debbie’s scans showed that there was a tumor on the sack surrounding her heart. Cancer was closing in. The treatment she decided to take was a bone marrow transplant. She never made it home. I never saw her again after our Friday night goodbye’s, before she headed to St. Louis. She died in the hospital from complications due to the treatment.

Melanoma isn’t about words and their definitions. Melanoma is about real people struggling every single day. Every day since that first phone call, “We have your results, we’d like you to come into the office to discuss. No, unfortunately, I can’t tell you more, as I’m only the nurse. The Dr. will see you tomorrow”. The fear, the uncertainty and confusion.

Whether it is a diagnosis that requires ongoing treatment with scans every three months, or with the coveted NED (no evidence of disease) victory cry, these warriors battle daily. And with Melanoma, the battle continues for the rest of their lives, until there is a cure.

So in conclusion, when you hear of a friend, family member, co- worker or neighbor that is walking on the Cancer road, acknowledge their fight. You may not see evidence of their battle, but I can guarantee you, there are scars. Words may not be necessary, but a hug and a listening ear is a gift. And one that they have earned, and one they will cherish.

Peace~

Sunday, October 21, 2012

The Quest....

“It will take a miracle for you to survive”. Those words are seared into my brain. Those were the words spoken to us from the surgeon who was about to cut away half of Jillian’s liver. From a Doctor. From someone you are trusting and looking to for answers. Those words that were delivered in such a harsh, insensitive manner. 

 I will never forget watching the color drain from Jillian’s face as she sat on the examination table. I will always remember looking at my kids from across the room seeing  their tears fall softly from their faces. My world stopped, it was if all the oxygen was sucked from that room. The room was silent except for the occasional sniffle.

 And I then I remember feeling this fierce protectiveness bubble up inside me.. And the anger. How dare you. It was those very words that motivated me to prove him wrong, and to begin to navigate my way into the belly of melanoma. It is not a pretty place.

I’ve learned much these last two years. I’ve seen firsthand the resilience, determination, and joy, coming from a young 21 year old woman who has been handed a cancer card. I’ve seen what love can do. I’ve seen how extended family members and friends rally around us.  I’ve been blessed to have met so many new, wonderful people along this road as we meander along with melanoma as our partner.

I’ve also seen a darker side, and have taken some hard hits because of it. But my faith remains strong through it all, and I KNOW without a doubt that we will see the other side of this with love, compassion and a peace that surpasses all the darkness that threatens to suck us in.

I will continue to fight for my daughter and for all of those Faces that are currently battling this war against melanoma. And in doing so, spreading awareness where ever I go. That is my quest, my focus. My mission. Nothing will deter me, or my family from achieving this goal.

Fall Seven Times, Stand up Eight.

Peace~

Thursday, October 4, 2012

The Real Deal..

So. Here we are. It has been three years, and three months since Jillian was first diagnosed with melanoma. Two years since she was diagnosed as Stage IV melanoma. Two years since she had half her liver ripped out of her body. Two years since I’ve slept through the
night without waking up with this heavy ball and chain that follows me through my day. At work, running errands. All. Day. Long. And then at night. Every night. And TWO YEARS that Jillian has undergone numerous treatments, and endured all of it without complaint. I am ashamed at my weakness compared to her.

 For those of you with children, this is your worst nightmare. All the hopes and dreams you have for your child. Shattered. Changed. To see them go through what should be the very best times of their lives….college, moving into an apartment, a new career. Their whole life in front of them with only the sky as their limit. Interrupted. You just can’t sugar coat it.

And yes, I am mama bear. I will do everything in my power to protect my children. Especially if they are injured, as Jillian most defiantly is. If you have issue with it, step aside. This mama bear attitude is what motivates me to fight this beast. To support my daughter. It’s what keeps me going, and helps me to stay focused on raising awareness to this very devastating cancer.

It helps me to see the bigger picture, and to know that I’m not alone in this. Because the blessings continue to be revealed to me. Through my family, my friends. My melanoma community. I know God has a plan. And its big.

I am not happy, but I am motivated.

Peace.

Saturday, September 22, 2012

The Promise....

This post was hard for me to write. But I made a promise that I will share this journey with all of you in the hopes that by revealing the story of one family, it may bring hope and peace to those on similar journeys.

 The day was similar to the last few days. I had no way of knowing that on this day, I would see my dad for the last time. I did not realize that I would be holding his hand, stroking his face, telling him that I loved him for one last day.  

I look back on the last few months since Hospice was called in. We brought my dad home from the hospital with the intention of caring for him at home, piece of cake, we could do this.  It didn’t take but four weeks to prove that theory wrong. We then moved him to a beautiful Hospice facility, Trillium Wood’s, where he was very well taken care of. All the while, I’m thinking that I am going to give my dad a beautiful death. I wasn’t sure exactly what that meant, especially since I’d never witnessed someone slowly leaving this world, in preparation for the next.

Dad always had a room full of people. So many friends and family members would stop by and visit with him, visit with us. His family most of all. His wife, his children, and his grandchildren. I can honestly say there was never a day he was without someone in the room with him, loving him up.

As the weeks, and days moved forward, dad got weaker and weaker. He stopped eating as much, he became less responsive, he slept more. But every day, I could always rouse him.  Rarely was he in a deep sleep. He would open his eyes, smile, and squeeze my hand. I told him I loved him, and he would whisper those words back to me.

One afternoon, while family members were at his bedside holding his hand, my mom and I sat on the couch quietly chatting. I looked at my dad, turned to my mom and said ,"There is nothing beautiful about this. Sorry. There just isn't". At least then there wasn’t.

Saturday when I came to see him he was agitated. As I sat on his right side holding his hand, he would grab my other hand and try pull himself up. Surprisingly, when he would do this, he was very strong. The nurse would come in and give him something to relax, but I could tell he was still restless.

Sunday morning I left for church before heading  back to Trillium Woods. On my drive to church, I always pray and ask God to clear my head of all the tangled, muddled thoughts I have swimming around. I pray for Him to open my heart so I can hear what He may be trying to tell me. I don’t always like going to church these days because it’s hard for me to get through the church service without crying. It’s the music that does it for me. I don’t like shaking the person’s hand in front of me, or behind me with tears streaming down my face. I can’t help it. I just leak. 

This Sunday however, the service didn’t have the same effect on me as usual. We had substitute pastor, and it just wasn’t clicking with me. That’s okay though, because it allowed me to be open for other thoughts. My mind is wondering, Bible open to ACTS...and out of the blue comes this thought:

Ask your dad when you see him to watch for Jillian once he gets to Heaven.

Whaaaaa???? Weird, but OK. 

I've been reading a short booklet called Out of My Sight. Its written by a Hospice nurse on the last stages of death, and what to expect. One of the things that is mentioned is each person faces death differently, depending on the person. If they have unfinished business, they fight death. If they have fear, they fight. If they don't want to leave their loved ones or family, they fight it. Bingo. That is my dad. He does not want to leave us.


Once I get to Trillium after church that Sunday, I tell my dad over and over how much I love him, I tell him we will all be ok. I tell him mom will be well taken care of. I told him how on Saturday, my kids came to their house and made sure the pool was taken care before winter. Jonathan looked at their sprinkler system, and how to winterize it. I reassured him that we will handle all of those details for mom. He hears me, and smiles. Then he leans towards me with both hands, takes my hands into his own, and asks me to get the car and take him home. He wants to go home NOW. He has such strength, and is SO frustrated that he can't get out of that bed. I talk with him, and sooth him as best I can. All this time, I'm not leaking, my mom is, but I'm fine.

And then I remember those words spoken to me in church. As I'm sitting on the bed next to him, still holding both his hands, I ask him if he will do me a favor. He looks up at me and nods his head yes. With my voice cracking, tears streaming unchecked down my face, I speak. "Dad, when you get to Heaven, will you wait for Jillian and be there for her when she gets to Heaven too? Will you give her a big hug from her mama? I want to be able to tell her that you and I spoke about it, and that you will be waiting for her". He looks at me. I wasn't sure if I had said the right thing, or if he even understood what I was saying. But then he nodded his head, and said yes.I kissed his forehead and thanked him.

After that, he seemed a lot less agitated. He even fell into a deep sleep. Something that I haven't seen in a while. I wondered if he felt needed, and that he has one last job to do for me. I don’t know.....but I felt good about it.

My dad never really woke up from that deep sleep. While Jillian and I, my mom, and so many other family members and friends visited him that next day, we weren’t sure if he knew we were there. I tend to think he did. And I will always, always remember the last word’s he spoke to me. “I love you”.

Leverne G. Visch, aged 83, went to be with his Lord that night, September 17, 2012, while his grandson Joshua, my son, held his hand. He leaves us with a promise, and a legacy of love.

Now THAT is indeed, a beautiful thing.

Peace~

Friday, August 31, 2012

"I believe in Miracles"

I have spent many, many evenings in the emergency room these last few years. My dad has congestive heart failure, diabetes, and a whole list of ailments that has landed him there. Tuesday evening, however, the ER was a whole new experience for me.

 Jillian has been experiencing all sorts of new symptoms the last two weeks. They come on slow, they creep up on you when you’re not looking. You look back, and you can see them all, each one flashing a neon warning sign. Tingling and numbness in her left thumb and forefinger. Increased weakness on her left side. Headaches that are relieved with Tylenol, increased headaches that are not. Light headedness, fatigue, occasional vomiting. Dropping things, bumping into things…..each one of these things on their own are creepers…put them all together and they spell trouble.

 Jillian and I arrived at U of M’s ER at 6:00 pm on Tuesday, after a three hour drive. The admission part of our stay went quickly, the rest of the visit dragged on into the night. SO many questions, IV’s, neurological exams, blood work, MRI’s, and waiting for results.

 I am blessed with the ability to work from home. Each time we have a dr. appointment, I take my computer with me and I work. While waiting for Jillian to return from her MRI, I was instant messaging one of my co-workers, Staci. Staci has become a part of our family, and a huge support for me. I’m messaging her, “Its taking so long…she’s been in the imaging room for almost three hours…I know something is going on…..where is my Miracle Stac? “

 It took her quite a while before she responded to me. But then the message box popped up on my screen. I had a clear image of her just then, tears streaming down her face, struggling to say the right thing, the thing I needed to hear.

 "Jillian IS your miracle, Sue".
 "You’re Miracle is Jillian".

 And with those simple words, I was reminded once again that the Miracles in our lives are all around us, every single day. I have too many Miracles to count. My four precious children, Jonathan, Joshua, Jillian, and Jennie. My new daughter in law, Kaytie, my two incredible grandchildren, Spencer and Charlotte, my parents, Jillian's fiance', Steve, Jonathan’s sweet girlfriend Ashley, and my wonderful supportive family and friends.

 As I was driving to my Gilda’s club meeting last night, I had another image. With tears streaming down my own face this time, I was placing one of my Miracles in God’s loving, open arms. Right where I know she will be safe when I’m not with her. Right where she needs to be, all loved up and comforted, and protected while she is away this weekend at the cabin. I know He will watch over her for me.

 Miracles come in all shapes and sizes. Some even have four legs. This holiday weekend, love up on some of yours.

 Peace~

 The photo is a tattoo Jillian’s sister, Jennie, created in her honor:

 “got this for my sister, praying for you every day. God won't put you through anything you can't handle♥”
-jenni

Tuesday, August 21, 2012

Defining me...

de•fine -transitive verb
 1
 a : to determine or identify the essential qualities or meaning of b : to discover and set forth the meaning of
 c : to create on a computer
 2
 a : to fix or mark the limits of
b : to make distinct, clear, or detailed especially in outline
Characterize, Distinguish <you define yourself by the decisions you make Denison University bulletin>

  I remember thinking, or possibly even saying at one time, Melanoma won’t define who I am. I’ve been thinking about this a lot, and I wonder, how can it not? It is my sleeping partner. It sits with me over coffee in the morning. It goes to work with me each day. It hangs around in the evenings, and it comes along on vacations. 

 Last week was a rough one for me. My dad had been home on Hospice care, and last week Thursday he was admitted to a wonderful hospice care facility. It took some time before I completely got my arms around that transition, but I’ve gotten used to the idea. I’m even okay with it. I have been on vacation this week just trying to recharge my batteries. It wasn't until this evening that I was able to call my parents. I’ve been in healing mode, and I did not want to be thrust back into my reality by talking to them. I told my mom about my lack of communication, but in typical mom fashion, she understands.

We talked about being “burnt out”. I think it has happened to me. I’ve heard the phrase, but I dismissed it, not really understanding what being “burnt out” really means.

 But I can almost guarantee that those that have melanoma, or are caregivers of loved ones with this horrific disease know exactly what I’m talking about. There comes a time when you have to recharge. For a long time, I was able to function on my anger towards this disease. The constant drive to share awareness, get that word out to others…go go go…..Not to mention the true caring and loving that comes from supporting those with the disease. The pain you feel as those you’ve become friends with are struggling with this evil cancer. I know that I’m not doing anyone any good by being “ burnt out”, and staying that way.

 So this week is healing week for me. I’m embracing the wide open spaces that I have always needed to feel complete. I’m praying a lot. I’m shedding some tears. I’m loving my family, and my special sidekick, Annie. And I am trying to close the gap between my fingers as the sand tries to find its way through.

I’m paying close attention.

Peace~

Friday, August 17, 2012

The Piano Man....


So many thoughts have been circling through my mind  the last few weeks. I lay awake at night and wrestle with them all. I try and put it all in a neat little organized package, but that just doesn’t work very well. My thoughts are slippery, and have their own path to follow.

My Dad has been home on Hospice care for the last three and a half weeks. I never had a family member, or even a close friend that had been on Hospice, so I had no idea what that would mean for the family. I went into this transition period with my Dad full speed ahead. He wanted to be home, we’ll get him home. We will make it work. I’ll make it work if it’s the last thing I’ll ever do.HA! I did not take into consideration what this noble, selfless act would do to my Mom. It has taken a toll, to say the least. Every day, Dad has been getting weaker and weaker. The first week my Mom was able to get my Dad up from the bed and to the chair by herself. The second week, there was no way she could do it alone. I have been sleeping at my parents house every night, and spending most of my days there, working from their home along with Jillian. I don’t need to go into the logistics of it all, but it works. Until this past Monday.

After my Dad’s breakfast, the routine has been to get him to his chair with the help of his walker. This day, his legs just wouldn’t work. My mom and I have a little system where I pull him up until he can grab hold of the walker and balances himself before he begins the short trek to the chair. “Ready for your marathon Dad”? He always grins and nods yes to me. I’m holding him with all of my strength, my mom right behind him. He starts to buckle, but I hang on tighter. My back begins to spasm, and sweat is pouring down my neck and back with the strain of his weight. “Stand up Dad, try and stand straight”. And he does. Slowly, we begin our marathon to the chair. I had a vision of Tim Conway in one of the skits he did in the Carol Burnett Show. I started to giggle inside. We were getting nowhere fast. Get it together Sue. Slowly, at an inchworms pace, we got him to the chair. It was at that moment I knew. We couldn’t do it anymore. I couldn’t do it anymore. I think my Mom knew a lot sooner than I did that caring for my Dad alone wasn’t going to work. She has been caring for him for many years. It’s time. Time for someone else to take over the physical care for him, while we enjoy the time we have with him.

Yesterday was a big day for us. We got Dad settled in his new home. It is a beautiful facility surrounded by woods. He can go outside, right off his room on the patio, and enjoy the fresh air again. Hear the birds, feel the warmth of the sun, and smell the rain. As we wheeled him around in his wheelchair, we stopped in a huge lounge area where a piano waits. My sister can play beautifully, and has done so professionally. “Will you play for me Deb”? And she did. I held together pretty well, until he asked her to play one more. With tears streaming down our faces she played as my mom held tightly to her lifelong mate, with me and Jillian crying and hugging, sharing and experiencing this moment of love, hope, peace and faith.

I spent one last night at my parent’s home last night. My Mom and I both grappling with our inner thoughts, talking and crying together. I know she feels relief that my Dad will now be cared for in a way she couldn’t do for him anymore. I’m struggling with my own sense of failure that I couldn’t do more. I know I shouldn’t feel that way. I know this. But I do. I’m stubborn that way.

I’ve been learning so much about life these last few months. I’m experiencing so many miracles every day. My eyes are wide open, and I’m grateful. I’m thankful for all of the people who have been so supportive, and so unselfish with their time, their love, and their support for me, for Jillian, and for my Dad.

I'm planning to listen to many, many more songs, as I continue to learn and experience all there is to hear. 

God Bless




Thursday, July 26, 2012

Teetering on the Edge....

Have you ever felt that you’ve reached your limit? I’m not talking about the times when we say that we’ve had enough. I’m talking about the times when you really feel that just one more thing will push you over the edge. I’m talking about the place where if you let go of the tight grip that you have on yourself, you may never find your way back again. I’ve been teetering on that edge these last two weeks.

This past week Sunday, my mom brought my Dad home from the hospital with Hospice care. Probably one of the hardest decisions our family has ever made. Between my mom, myself and my sister, we have been caring for him at home. These are his wishes. So far, we are doing okay. It’s hard on my mom, I know. There are times I can’t be there for her, but she has been coping. She’s small, but that woman is tough. And she’s only 78.

My father is a man’s man. He’s that guy that doesn’t say a lot about how he is feeling inside. He is very stoic. I’m sure that frustrates some people, but for me, it’s admirable. Every once in awhile he will tell a story of his time serving in the Korean war. I didn’t even know until several years ago, that he has a Purple Heart from the war. He has been battling diabetes and congestive heart failure for years now. I don’t often hear him complain.

Then we throw into the mix scan week for Jillian. As hard as I try not to worry, the fear grips my heart. It’s those heart skipping moments during the day when I’m focused on something else and I’m reminded of what lies right around the corner. The tentacles of fear wrap around me, and I fight to shake it off. I fight hard. And I pray, a TON.

We had our scans on Tuesday, and the appointment Wednesday with her doctor to go over the results. We sit in the waiting room waiting for Jillian’s name to be called. We rarely get in to see the doctor at the scheduled appointment time, so waiting is what we do. The nurse comes into the room with her clipboard and calls someone else’s name. Ugh. Skipped heartbeat. Finally our name is called, and we go into the Dr’s examination room. And we wait. And my heart is pounding, my mouth is dry. I play a game with myself by trying to read the PA or the Dr when they finally come in the room. If they come in smiling, that means good news. If they come in and ask too many questions about how Jillian is feeling, that means it’s bad news. I’m rarely right.

The news we received yesterday was mixed. Two of the tumors in Jillian’s brain show changes. We aren’t sure if its swelling due to the radiation, or if its progression. We will know this weekend what our next steps will be. Surgery to remove one of the tumors, more SRS on the tumors, or chemotherapy.

So, we pack up our belongings, check out of the office, and head out the door. And I’m in one piece, I haven’t fallen into the abyss. I’m ok, Jillian is ok. We heard some news that wasn’t exactly what we wanted to hear, but we heard good news too. No new tumors anywhere on her body. For me, it felt like a lightness inside myself. I think it’s God. I’ve apologized to Him for teetering so close to the edge, and allowing that darkness to be bigger than it needed to be. I’ll do better next time.

I’m reminded of a sweet memory I have. Monday was my dad’s 83rd birthday. I was kneeling on the floor by my dad’s bedside. I was holding his hand, that big, callused hand, and he was gently rubbing his thumb across my palm. And he was reassuring ME. Without words, but with a simple touch. I will never forget that tender moment I was given. I know I’ll have many more.

So, in conclusion, mama bear is fine. A little battered around the edges perhaps, but starting to get crabby again against this nasty black beast.

Stay tuned.

Wednesday, July 4, 2012

Out of the Woodshed and Into the Light....


Yesterday Jillian and I traveled to the University of Michigan for her final infusion of Yervoy. It was just the two of us this time, and I always cherish that one on one mother/daughter time. It reminded me of all of the road trips we took together when she was on a travel soccer team. I remember one trip in particular where we traveled to Missouri. We stopped at a Target on the way and purchased the Backstreet Boys CD, Black and White. To this day, whenever I hear one of their songs, I’m taken back to the memory of us belting out the songs as we are speeding down the highway. Fun times!

This road trip was different of course, but just as our soccer days were a part of our lives in a big way, so are our trips to U of M. This has become our way of life. Trips to the Dr for scans and/or appointments every three weeks. It’s what we do, it’s how we schedule our time.

I was encouraged when Jillian mentioned that her vision was improving. Jillian has been having blurred vision for about six weeks now. This is related to the ventricles in her brain swelling due to the swelling of the tumor. She has been on a higher dose of steroids, but has been decreasing them each week. Or so I thought. We determined that there had been a mix up on the dose last week, so where we thought she was down to 2mg once a day, she was still taking 2mg twice a day. Since she didn’t see much difference a few weeks ago when she was taking 4mg twice a day, we are still encouraged that the 2mg additional each day wouldn’t make much difference. We just need to keep an eye out for any changes in vision with the lower dose. Dr. Lao is encouraged at how well Jillian is doing on the combined treatments of Yervoy and Zelboraf. She still continues to have minimal side effects on these drugs. After our appointment with him, we went down for her last infusion, left the hospital and stopped for dinner before the drive home.

So now I’m home and my heart is full. I’ve been told that there are two types of people. There are the coffee table people who lay everything out on the table, and have to talk about their issues right away. Then there are the woodshed people like me. These people find their woodshed, and process things on their own. I was pulled this morning to my woodshed. But today it was more than just processing the events of yesterday. I knew that God had to talk to me, and I always find I hear Him best when I’m surrounded by the beauty of the outdoors.

It’s terribly hot outside as I pull the weeds from my flower garden. This is healthy for me as big silent tears fall to the ground. I’m trying to figure out what I’m feeling, and I’m not rushing it. I’m just praying and asking God what He wants from me. I think I understand now.

As I look back on yesterday, I cannot describe accurately how it feels to see my daughter hooked up to the IV that will administer her drugs. It’s surreal. I see all these people in this big room, doing the same thing we are. They all have cancer, and they are all getting life saving drugs. Some of them have loved ones sitting next to them, many of them don’t. But they all have Hope. And THEY HAVE A FACE!

This brings me to the two things I think God was trying to talk to me about. I wrote before that my friend Mary lost her precious daughter Kristen to Leukemia at the age of 20. A big concern for Mary was that people would forget Kristen, and who she was. She has worked hard to keep Kristen’s memory alive, and to continue to honor her every chance she gets.  

The other thing is a confession. About 5 years ago I was at the Fifth Third Riverbank Run here in Grand Rapids. While I was there, I walked past an old neighbor of mine. I hadn’t seen her for years, since I had moved out of the neighborhood. I had heard she was battling cancer. I saw her with a colorful bandana on her head, covering her baldness due to chemotherapy. It all happened so fast as I was walking, but we made eye contact. She had a huge smile on her face, but it took me a minute to register who it was. And. I. Kept. Walking.  I didn’t stop. I didn’t turn around. I just kept walking. She passed away about a year later. I was too concerned with myself, and what I would say to her. I was selfish and afraid. But now I’m ashamed because I will never get the opportunity again to give her a hug. To tell her she looks as beautiful as she always did, to tell her I would pray for her and her family.

So while many of you are enjoying your Fourth of July festivities with family and friends, take a minute to reach out to someone that you know is battling cancer. Acknowledge their fight. Remember that person who has lost a loved one and doesn’t feel like celebrating the Fourth today. Try and step out of that comfort zone and risk feeling uncomfortable. We are all connected together in this world. Serve one another. Spread your love, and bring Hope to someone who very well may need it.

Pray about it. I will.

Love,
Sue

Below are links to our warriors and a special hug to Kelly, in memory of Casey who left us one year ago today.


Sunday, June 24, 2012

The Beauty in Devastation...




A fellow melanoma warrior, and the author of blog, Welcome to the Hotel Melanoma, Rich McDonald, posted the above picture. This photo was taken last night near Manitou Springs, Colorado. I’ve never lived in an area where there are wildfires, so it’s hard for me to imagine what it would be like living in the path of such destruction. But I can certainly imagine the fear and anxiety it would cause. Your family, your home, your loved ones are being threatened, and there isn’t a damn thing you can do about it. Sound familiar? Yeah…I’m making a parallel.

Melanoma is a beast. It’s a hot dragon that spews out fire and destruction in its path. It has no time table, it has no agenda. It just is. It strips you raw, and swallows up your whole family and everyone around it and then spits you out. It causes fear, and anxiety, and just like that wildfire, there is not a damn thing you can do about the devastation it causes.


This photo ties into the latest efforts in raising melanoma awareness. The face book page, The Faces of Melanoma. This page was created to reveal the Face of Melanoma. To show the world that melanoma cancer has a face, and to share those stories. It’s a place where one can go to post a message to a loved one battling the disease and add a word of encouragement. Or a place just to honor someone no longer with us. I have received several messages telling me that this has been healing for them. Knowing that people care and are supporting them in their journey IS healing.  

The Scars of Melanoma was started because there are those who may see the faces, realize that so and so has melanoma, but they don’t see what lies beneath the face. How can they? This isn’t something that is shared easily. How can they know how vulnerable it feels to the warrior when they step out of the shower and get a glimpse in the bathroom mirror of their scared belly? How can they know how it feels when the scar on your back has gotten three times the size of the original site due to stretching and an infection that set in while trying to heal? How about when our warrior puts on a pair of shorts, or what about the eye patch that is needed every single day?  But yet, these warriors post their scars for the world to see. Why? Because they want to share their stories in the hopes that maybe, just maybe, one person will see. Maybe one person will take this nasty black beast seriously. Perhaps save a life. It takes tremendous courage to push through the hesitation and uncertainty. 


So as I look at the fire, and I think about all the devastation it is causing, I cannot help but see beauty. There is beauty in the devastation. These faces, and these scars are beautiful. They are beautiful because they tell a story. Your story.



So while you are fighting your battle with courage and determination, O mighty Warrior, know that you are the beauty in devastation.


The above pages are part of a multi-pronged effort with Rev Carol Taylor. She has created a website called Faces and Scars of Melanoma. This site is dedicated to honor those battling melanoma, and to remember those no longer with us. It also has a page dedicated to acknowledge efforts being made to raise awareness. Please feel free to join us. No. I encourage you to join us. :)

Love,

Sue


Tuesday, June 5, 2012

Meandering with Melanoma....


Jillian continues to deal with the effects from the treatment of this disease, Melanoma Cancer.. Most recently, she has been having blurred vision. We think it is related to being in the sun without sunglasses. The drug she is on, Zelboraf, causes extreme sun sensitivity. So not only is it important to wear sun screen, and sunglasses, it is critical. She can be out in the sun for only 3 minutes and blister without protection. As her mother, mama bear, I have to juggle between being concerned and proactive, with being a ‘worry wart’, and hovering. I think, with Jillian’s help, I’ve pretty much mastered it. Finally. One of her eye flashing looks will tell me I’ve crossed the line. One of her grins tells me, I love you anyway mom. J

Recently I finished reading the book, Unbroken , by Laura Hillenbrand. This is a story of a World War II POW. A story of survival, resilience, and redemption. It’s one of those books that stay with you. I’ll find myself thinking about a particular chapter, and I can’t help but compare this man’s story with Jillian, and my fellow Melanoma Cancer warriors, and their stories.

 I stand in awe of the human instinct for survival. I am amazed at what the human body can endure. Oh, you hear the stories, so and so has melanoma and is undergoing chemo. So and so has melanoma and is in the hospital waiting for his T-Cells to grow. So and so just had surgery, so and so completed full brain radiation. Uh huh. You hear those stories, but do you? I think it’s normal to hear them, say a quick prayer, and then look at the “to do” list hanging on the refrigerator.  Do we really know what it means to have melanoma cancer?  These Faces of Melanoma are the hero’s, the true warriors. These faces are going through treatment, while trying to live a normal life. They have families, they go to work. They jog twice a day whether they feel like it or not. They have to remember their medications, have them refilled. They have to schedule time around their Dr. appointments and scans. They have to accommodate their schedules for feeling crappy and fatigued. Something I was reminded of today. These Faces of Melanoma undergo trials. Jillian did last summer. These Faces are at the forefront of new discoveries, and they endure the effects of the treatment, without knowing the outcome. They do it for themselves, and they do it for you.  And yet, through it all, these Faces of Melanoma thrive. They know how precious each day is. Rarely do they take those days for granted. They are loving and compassionate, and they always give of themselves to others in spite of their own challenges.

Last Sunday, I started the day feeling sorry for myself. Jenni moved into an apartment on Friday with friends, getting ready to begin college in the fall. I spent the day Saturday working in my yard. I was just plain weary. And I think my last cub leaving the den hit harder than I thought it would. So, while sitting in church that morning, I almost walked out the door. I could feel the lump forming in my throat, and the tears threatening to fall. But I stayed, and I’m glad I did. I needed to hear the message, because it was intended just for me. :) The pastor reminded me that while things don’t always make sense, He is with us while we meander, and that we pick up people along the way to meander with us. And this is so true for our family.

 The Faces of Melanoma. So happy to meet you, and to share in your journey. You have blessed my life far beyond my imagination. And I promise you. I will walk beside you, and I will fight for you. I will never stop.

Love,
Sue

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.

Love,
Mom

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,
Sue

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 button.at 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).