Chronicles

Bleeding mole checked/removed/tested.

Unexpected results from pathology positive. Melanoma Cancer. Stage II

Mapping, wide excision. Sentinel lymph node removed + one

Results from lab. Surrounding margins clear

Not an exorbitant amount of celebrating results due to lack of knowledge of this terrorist of cancers.

Recovery from surgery. Complications with healing. Another procedure to open wound to help heal.

Checkups every three months. Smooth sailing.

One year anniversary of surgery. Dr orders PET scan “just to be sure”.

September 23, 2010. Positive. Cancer. Stage IV. Tumors, one in each lung. Large tumor in liver.

Turmoil.

Confusion.

Fear.

Anger.

Fear.

Sadness.

Anger.

Anger.

Surgery to remove half of the liver.

Recovery.

Appt at U of M to discuss options.

Brain MRI

Positive for tumors.

Stereotactic Radio Surgery on brain

Scans

Stereotactic Radio Surgery on brain

Clinical Trial/BRAF

Scans/Shrinking tumors

Scans/Shrinking tumors

Scans/Changes in tumors

Scans/positive growth in tumors/new tumors/off trial.

Scans

Full brain radiation

Yervoy infusions

Scans/more tumors

Stereotactic Radio Surgery on brain

Zelboraf

Scans/tumors shrinking

JOY

This condensed version of Jillian’s Journey tires me. J

I’ve listed some of the emotions that were experienced with Jillian’s initial diagnosis, but I haven’t mentioned them as we moved forward with her treatments. They are all present, however, plus many, many more.  Until I had a child with cancer, I had never experienced the intensity of these emotions.  And here is where I want to apologize, and to acknowledge my dear friend Mary.

Mary, her husband Ron, and their children, Ross and Jason , lost their daughter/sister, Kristen Joy  to leukemia at the age of 20 on Christmas day nine years ago. I walked that walk with them while Kristen was sick and undergoing treatments. Or so I thought. Now, as I move through this cancer journey as a mother of a child with cancer, I am ashamed. I’m stricken at my inability to see how all encompassing this cancer world is. I’m sorry I couldn’t feel what she was feeling. I’m sorry because I can’t get that time back in our lives, and to be a better friend. I specifically remember a time when Mary and I went out for breakfast together. We hadn’t seen much of each other because she spent so much time caring for Kristen. I loved having that time with her, but I felt as though I didn’t have my friend across the table with me. She seemed distracted, somewhere else. I  recall when she told me she was ready to get going so she could head back to the hospital. I felt disappointed. ARE YOU KIDDING ME? I could kick myself now. You were right where you needed to be. For Kristen, for your family, for yourself.

Mary and I have spoken at length of how being the parent of a child with cancer changes you. I believe you go through a stage of grieving for that lost self. The loss of innocence in a way.

 I’m at the checkout line at the grocery store and the clerk asks me, “how are you”? I think, “do you really want to know”? Should I reply, “My child is fighting stage IV melanoma and she just had full brain radiation”.  Innocence.

I’m at the mall and I see a mother and daughter shopping together. I don’t see any of the worry lines creasing that mothers brow as they talk and share a smoothie. Innocence.

 I observe young mothers walking their baby daughters in their strollers enjoying the unseasonably warm weather.  And I PRAY they never, ever, have to meet Cancer. I could go on and on….. I know that I will never be the same person. The loss of innocence.

Nope, I’m not the same person, but that is all okay. I have grown and learned so much.  I’ve learned about the power that comes from a ticked off Mama Bear, and what it can accomplish.  I’ve learned a TON about my daughter and what she is made of. How she has taught me what true courage is. How she has shown me the face of a true hero. But most of all , I’m reminded over and over of God’s grace and how He works Miracles every day in our lives.

So, after a night of tossing and turning as I mulled over my shortcomings as a mother and a friend, I woke up refreshed. Today I am going to  celebrate the good news we received yesterday.  Jillian’s brain is stable, and her tumors are shrinking. Today I acknowledge the gift of JOY . Today I know that I am right where I need to be.

Much love and peace.

Left Behind...

The reason I starting this blog, was to be open and honest about how the diagnosis of cancer effects our whole family. I’m cringing inside as I try and formulate the words for this posting. So, let me give you some background.

I married at twenty years old, and had four beautiful children. Jonathan, Joshua, Jillian, and Jennifer (yeah I know, the 4 J thing). I was married to their father for 18 years. During that time, life was difficult dealing with an alcoholic husband/father, and all that entails.  Once divorced, life was challenging as a single parent.  But I will tell you this. We had a happy, happy, loving home. We didn’t have a lot of money to spend on extras, but we had more than enough love to go around. I spent a lot of time focusing on the kids emotional well being. For me, that was the most important thing. Our little unit was very close knit.

So now, one of mama bears cubs has cancer. My first instinct is to protect. Then it’s to try and fix it. In my efforts to do those things, I’ve gotten involved in raising melanoma awareness. I’ve also taken Family Medical Leave so I can be with Jillian when she needs me. But all of these things effect the rest of my family, especially the siblings. I instinctively know this, but I’ve done some research to better understand the emotions experienced by those “left behind”.

Emotional responses of the sibling

Brothers and sisters are shaken to the very core by cancer in the family. Their parents, the leaders of the family clan, are immobile for a while. There is no time, and little energy, to focus on the siblings. During this major crisis for the siblings—this time when they are flooded with anger and concern, jealousy and love, when they are in conflict as never before—they often have no one to turn to for help. They may feel utterly alone, abandoned, desolate in their pain.

·         Concern

Children really worry about their sick brother or sister. It is hard for them to watch someone they love be hurt by needles, sickened by medicines, lose weight, and be bald. It is hard to feel so healthy and full of energy when the brother or sister has to stay indoors because of weakness or low blood counts. The siblings may also be old enough to understand that death is a possibility. There are plenty of reasons for concern.

·         Fear

The diagnosis of cancer changes children’s views that the world is a safe place. They feel vulnerable, and they are afraid. Depending on their age, siblings worry that their brother or sister may get sicker or may die. Some siblings develop symptoms of illness in an attempt to regain attention from the parents.

·         Jealousy

Despite feeling concern for the ill brother or sister, almost all siblings also feel jealous. Presents and cards flood in for the sick child, Mom and Dad stay at the hospital with the sick child, and most conversations evolve around the sick child. When the siblings go out to play, the neighbors ask about the sick child. At school, teachers are concerned about the sick child. Is it any wonder that they feel jealous? The siblings’ lives are in turmoil, and, being human they feel a need to blame someone. It’s natural for them to think that if their brother didn’t get sick, life would be back to normal.

·         Guilt

Beyond feeling guilt for causing the cancer, most siblings feel shame for their normal emotional responses to cancer like anger and jealousy. They think, “How can I feel this way about my brother when he’s so sick?”

·         Abandonment

When parental attention revolves around the sick child, siblings may feel isolated and resentful. Even when parents make a conscious effort not to be so preoccupied with the ill child, siblings still perceive that they are not getting their fair share of attention and may feel rejected.

·         Sadness

Siblings have many very good reasons to be sad. They miss their parents and the time they used to spend together. They miss the life they used to have, the one they were comfortable with. They worry that their brother or sister may die. Some children show their sadness by crying often; others withdraw and become depressed. Often children confide in relatives or friends that they think their parents don’t love them anymore.

·         Anger

Children’s lives are disrupted by a brother or sister’s diagnosis of cancer, and it can make siblings very angry. Questions such as  “Why did this happen to us?” or “Why can’t things be the way they used to be?” are common. Children’s anger may be directed at their sick brother, their parents, relatives, friends, or doctor.

·         Concern about parents

Exhausted parents often are not aware of the strong feelings of their healthy children. They sometimes assume that children understand that they are loved and would be getting the same attention if they were the one who had cancer. But siblings frequently do not share their powerful feelings of anger, jealousy, or worry because they love their parents and do not want to place additional burdens on them. It is all too common to hear siblings say, “I have to be the strong one. I don’t want to cause my parents any more pain.”

In conclusion, I realize that my kids aren’t young children anymore, but I would be remiss if I didn’t recognize that to some extent, they experience all of the emotions I’ve listed. I know I’m just one person, and certainly not super mom, but there is power in knowledge. Thank you God for putting this on my heart this past week. With His help, I will try to be more mindful of my other children that may feel “left behind”.

So today, is Jenni day. All day.

Hugs,

Sue

All Grown Up

“What are you going to be when you grow up Susie”?

“I’m going to be an advocate for melanoma awareness, and try to get people to learn more about the dangers of the sun, and tanning”.

You what?? Never in a hundred years would I have thought that this is where I would be at the age of 52. If I would have heard those words even five years ago, I would have rolled my eyes, and compared that statement to a tree hugger. Not that tree huggers are bad mind you, but I would have been so wrapped up in my own sheltered world, that I couldn’t have imagined the passion required to have those types of goals.

All that changed on September 23, 2010 when Jillian was first diagnosed with Stage IV melanoma. I think we all grew up that day. Me, my four kids, my husband. We have all been faced with a challenge of a lifetime, each in our own way. None of us are the same. But we are all doing well, going about the business of life. And we have the passion.

So I’ve discovered what I’m going to be doing now that I’m all grown up. I will never, ever stop trying to raise melanoma awareness. I will shout Jillian’s story from the roof tops if that is what it takes.

Thank you to everyone whom I’ve met this last year. Thank you for your love, your prayers, your guidance, and your never ending support. Together we WILL make a difference. I know it.

Peace,

Sue

P.S. I now hug trees too. 

The White Elephant

Do you ever have something on your heart that won't leave you alone? You go about your day to day activities, but that pesky, nagging little thing just keeps popping up? I've had this irritant for over a year now, and it's getting louder and louder, demanding my attention. 

Jillian was diagnosed a year ago, this past September, with stage IV melanoma. In October, that same year, Jillian had surgery to remove a tumor, along with half her liver. After a ten day stay at the hospital, Jillian came home to recover. She breezed through it all, with no complications. Soon after, she wanted to see her sister play Powder Puff football at the local high school. We made arrangements to borrow a wheelchair, and off we went. Her oldest brother, Jonathan, pushed the wheelchair, while I winced every time they went over a bump. For me, it was not a fun evening. My athletic daughter was being pushed in a wheelchair in front of a hundred familiar people. I tried to keep my mind on the game, and to watch my youngest daughter, Jennie play, but I may as well have been on another planet. Planet C. A whole other world. 

What was intended to be a fun family outing, ended up being very difficult. The White Elephant had arrived. I would see it on their faces. Some people hadn't heard about Jillian's melanoma, others had. Those people greeted us, asked how Jillian was doing, and wished her well. But it really felt as if some of them couldn't wait to hurry off, back to the safety of their own lives. Away from the White Elephant. 

We can forward a bit to November, the day after Thanksgiving. Jillian completed her first stereotactic radio surgery where three brain tumors were targeted. Again, she breezed through the treatment, and we settled in to wait the four weeks until her next scans. 

By this time I had already started Jillian's care page. It was just so much easier to update the care page, rather than having to answer phone calls and email. There are several nice things about the care page, but one of the things I love is to read the comments. So many posts of love, encouragement, support, and prayer. It felt so good to know so many people were supporting Jillian.  And I can see who is following her journey too. I like knowing that all of my family and friends are kept aware of what is going on. 

One evening, soon after the football game, I met several friends for dinner. We hadn't been in touch for awhile, and it felt great to connect with them again. Everyone wanted to know the details of Jillian's treatment plan, and her next steps. It was difficult to share everything without feeling that thick lump rise in my throat, and not to have my eyes well up in tears. ARRGGHHHHHH...stop it! I just want to sit here and have dinner, I just want to catch up with each of you. I don't want to be the center of attention. Just tell me about YOUR families, your lives. And so they did, and here comes my rub.

One of my friends had been talking about her daughter, what she was up to, where she was working, how she didn't see her much. How she would go to school, go to work, stop at the tanner, come home and...........................................................

My world stood still. I could hear loud noise all around me, but I couldn't hear any more words. All I could hear was my own inner voice screaming, "What did you just say? Have you been listening at all? Are you kidding me"???????

I cannot get that exchange out of my head. I recently told someone about it and she asked me, "Did you say anything"? And in my shame, I replied, "No". It felt like the White Elephant was in the room that night. I am ashamed of myself. I had an opportunity to raise melanoma awareness, and I blew it. 

Well, things have changed for me since that night a year ago. There is no longer a White Elephant in the room. Not in any room I enter. I realized then that if I had a hard time talking about cancer, how must it be for a 21 year old? 

I started Jilly's Jem's because I wanted the elephant out of the room. I wanted to make jewelry, raise awareness, and involve Jillian in it. Without shoving it in her face. It's always there, it's a part of our lives now, but good things have happened. I believe that is so important. The good things, and the rich, rich blessings. And I don't even want to say, "in spite of it", I want to say, "Because of it". 

I don't know where this road is taking me, but I know it revolves around raising melanoma awareness. I will try not to miss those opportunities like I did before.

I have complete faith that God will work out the details.

Hugs,

Sue

"I'm Tired of this Road"

Jillian and I left Tuesday afternoon for her scheduled appointment at U of M. Since her appointments are usually scheduled early in the morning, we head out the day before and spend the night in a hotel. Jillian drove this time since Drew, Jillian's step-dad, and Steve, were going on ahead of us after making a stop in Ohio. This left Jillian and me on our own for the evening (I just hate that alone time ya know).As we are driving down I-94, Jillian said, "I'm tired of this road". Thinking about the potholes and poor road conditions, in my daze I replied, "Yeah, the road needs work".

Jillian looked straight ahead and said, "No, I'm just tired of going down this road." Oh, I could have said a number of things in reply....all the positive, upbeat, inspirational things we hear every day. But sometimes, you just don't need to hear them. Sometimes, your just plain sick of going down this road.  Sick of driving to U of M. Sick of Dr. appointments. Sick of the radiation, sick of the infusions, sick of the blood work, sick of the scans. Sick of the hair loss, sick of being tired. Sick of seeing my daughter having to go through this on a daily basis. Sick, Sick, Sick of this road!! And that's okay. It is all okay. So I replied, "Yeah....me too".

We had a nice evening together after manicures, pizza in our room, a movie and a lots of back rubs/leg rubs/foot rubs/hand rubs. In spite of the road that got us here, we can still enjoy those simple moments. Those priceless moments that I will never again take for granted. The time spent with my family has never been sweeter.

Peace,
Sue

2012- Looking Forward

I am sitting in the hospital room with my dad this New Year’s Eve. He was admitted to the hospital on Thursday with several health issues.  He is diabetic, he has congestive heart failure, he has pneumonia……In short, his body is wearing out.  Sitting in the chair next to his bed, I listen to him breathe. My mind slips back to my childhood, and I see the man he once was. So strong, so capable. Rarely complaining, and tackling life head on.  

In my reflection, as I look back on 2011, and I am filled with wonder. Where did this past year go, and how do so many things happen in only one year? There have been a whirlwind of events, to say the least. My son, Joshua was married, and our family was blessed with a new daughter in law / sister in law. Our first grandchild was born, a beautiful baby girl. Jonathan moved out and has met a wonderful girl.  Jenni graduated from high- school. And through it all, through this life, Jillian has continued to battle melanoma with strength and courage. As I watch my dad, I know exactly where this strength comes from. Thank you dad, for giving us the gift of strength, perseverance, faith, courage, and LOVE.

The prime rib dinner we were planning to serve tonight with our dear friends has been postponed. There is no place I’d rather be.

Looking forward to all the wonderful, magical things waiting for us in 2012!

Much love~

Out of the Blue and into the Black

Christmas has always been a time of joy and celebration for me. Just like many young kids growing up , the anticipation and heart-beat skipping excitement was a part of my childhood innocence. I was totally absorbed in my own world, oblivious to any suffering outside of my protected bubble. Oh, I knew that people were less fortunate than I was. I learned at home, and in Sunday school about families that were struggling  during the holiday season, due to the loss of a job, an illness, or a dozen other reasons. But if any of those distasteful things entered into my young world for a brief second, I quickly dismissed them, because they didn’t relate to me.

As I began to have children of my own, I wanted to re-create that same sense of excitement, that same innocence. For the most part, I think I succeeded. I didn’t always have a lot of money to spend, but each child always had something to open under the tree on Christmas. We were surrounded by family, and surrounded by love. We were living under the Blue sky of innocence. Until last September when Jillian was diagnosed with stage IV melanoma. Suddenly our world was turned upside down. Last Christmas we were forced out of the Blue, and into the Black. For me, I only went through the motions of Christmas. The innocence and joy were shattered. I tried to make it as normal as I could for my kids. But my heart was broken.

Looking back on last Christmas, and all the Christmas’s before melanoma,  I can see that I was already living in the Black. I took so many things for granted, and I’m ashamed that I was so short sighted in my thinking. This Christmas however, as I look back over the last year, I’m grateful that I’ve been given the gift of sight. I can see so many blessings, and I am thankful that I can recognize God’s hand all over this thing. I have been given the opportunity to share and to raise melanoma awareness.  I have been given the opportunity to share Jillian’s story. I’ve been touched by so many wonderful, beautiful people that have been effected by melanoma in one way or another. My heart is full with love and gratitude to those people who have reached out to me and my family in support and prayer.

This past summer new neighbors moved in next door. The couple has four kids. Three boys, and one girl. Little 4 year old Abby and I have bonded. She loves coming here to spend time and to just “hang out”. Last week she stopped over with an ornament she had made in Sunday school. I felt so humbled that she made it just for me. In return, I made a bracelet for her with her birthstones. Right before we left for Jillian’s appointment, and infusion, I  brought the bracelet to Abby’s house. I included in the package a brochure that describes Jillian’s battle with melanoma,  along  with a picture of Jillian and her dog. I knelt down on one knee and explained the meaning of the bracelet to her. “This is your birthstone, this is Jillian’s birthstone, and here is a little heart. When you touch this heart, remember how much Jesus loves Jillian, and how much He loves you”. This little girl is another blessing. She is learning at a very young age that melanoma has a face.

  

Out of the Black and into the Blue.

Love and blessings to you and yours,

Sue