Striving for More

Four Years Ago Today

Diane Moore — Sun, 18 Sep 2011 11:00:00 EDT

Four years ago today, I heard the words "there is a lesion on Colleen's femur". I was alone with Colleen at Triangle Orthopedics. This was our second or third visit. Colleen had been complaining of knee pain for a couple of months. She was a year round swimmer and she was still swimming every day but in the evening the pain had gotten so bad she would cry every night. Our previous visits resulted in a knee brace, over the counter pain medicine and no relief from the pain. The last visit even included blood work, which reveled nothing unusual. The doctor was about to refer us to a Rheumatoid Arthritis specialist when he stopped us halfway out the door. He asked me if I thought her thigh was swollen. I told him that I didn't notice anything unusual. He suggested that we take a film of her thigh. They had previously only taken films of her knee, which were all negative. Colleen and I waited patiently in the room for the doctor to come back in with the results. He came into the room and invited me into the hall. He said, "well you are right". "She has a sizable lesion on her femur" as he pointed to this cloudy area on the film. It was odd. My sister is a physician. My father died of cancer just 8 years earlier. My cousin had cancer. Cancer and I were not strangers. However, I had absolutely no idea that the term "lesion" had anything to do with cancer. Looking back, I think this was God's way of helping me through that particular day. I had to keep it together. The doctor told me that we had to go get an MRI. We were at the Raleigh office and the only office that could take us that day was Durham. They wanted us to go there now, so Colleen and I traveled to Durham.

Before leaving the Raleigh office, the doctor explained that there was a "special doctor" at UNC that handled lesions like this. He never used the word Oncologist. He would contact him to make an appointment for us. I explained that we were going to the beach for the weekend and I asked if we should cancel our plans. He said no. That was the last vacation we took together. I wonder if the doctor knew that and that is why he told me not to cancel our plans.

Colleen and I went to Triangle Orthopedics in Durham for the MRI. I had to stay in the waiting room while she had her test. After a short time, the radiologist came out and asked me what the doctor had told me. I told him exactly what I had heard about the lesion and the special doctor at UNC. He said, "your daughter definitely has a tumor and I would like your permission to inject her with contrast to get a better look.” That was the first time I heard the word tumor. My stomach is retching even now as I relive the moment. It was a horrible feeling sitting there all alone, in that waiting room, processing that. I didn't know what to do. I didn't know if I should call someone. Do I break that kind of news to Vince on the phone? It was the first, worst moment of my life. The nurse came out and explained that they were having trouble with Colleen and asked if I could come back and help. I had to put my belongings including all of my jewelry in a locker due to the magnetic properties of the MRI. At this point, Colleen had been in this MRI for over 90 minutes. She had to go to the bathroom and they did not want to let her as they just hooked her up to the IV with the contrast. I tried to encourage her to hang tight until the test was done and she eventually completed the test. However, the process of that scarred her for the rest of her treatment. Whenever she had to have a test done, she would be overwhelmed by an urgency to pee, I believe it was psychological as a result of that initial test and their reluctance to let her go to the bathroom throughout that lengthy test.

When we left Triangle Orthopedics that day, the technician showered her with gifts. She left with a tote bag, a stuffed animal, a flashlight and a pen that looked like a syringe. She felt like she hit pay dirt. All I could think was that this must be the sickest child they had seen in a very long time.

Over the course of the next two weeks we saw all the specialists and Colleen had a multitude of tests. On Monday, October 1st, Colleen's Oncologist delivered the horrifying news that Colleen had Stage IV cancer and will likely succumb in 9-12 months.

Our lives and the lives of everyone we knew were profoundly changed forever.

A Child's Confidante

Diane Moore — Thu, 25 Aug 2011 06:05:00 EDT

By Diane Moore, Executive Director, Striving for More

It’s a fact that children do not usually share their feelings of fear with their parents in an effort to protect them. This was something that I learned along my daughter Colleen’s journey. I wish someone had told me this when she was first diagnosed. I would not have stopped trying to engage her, but I would have been sure that she always felt that she had someone to share her feelings with. This is probably my one regret about her journey. I hate thinking that she might have felt alone with her fears. And looking back, I know that she did.

This is what fuels my passion for founding the nonprofit organization Striving for More. I don’t want any family or child to feel alone on this journey. I want them to know that someone else has been where they are today and has felt what they are feeling.

When Colleen was initially diagnosed, she received excellent support. In fact, we all did. However, after we changed hospitals to receive medical care more targeted to her diagnosis, we discovered that emotional support for children with cancer and their families is not consistently delivered throughout the Triangle.

Although she was receiving excellent medical care, no support groups were available and no child psychologist was on staff. There were only two child life therapists shared across 12 pediatric units, and therefore they rarely visited her. A pastor never visited, and although a social worker visited frequently, she was not prepared to provide clinical talk therapy to Colleen or our family. This left a big gap in her care, one that I knew would be problematic.

I tried my best to circumvent problems. I felt that I gave Colleen endless opportunities to express her feelings. Even though it was a very difficult conversation—one that I did not want to have—I came right out and asked her hard questions in an attempt to open the lines of communication.

Our older daughter has been treated for anxiety and depression since she was very young, and I went to her therapists and asked for advice on how to encourage Colleen to express herself. They suggested that I add a “feeling faces worksheet.” This worksheet was an exercise that we added to our daily routine in order to encourage her to express her feelings about each day. It had three sections: The top section was a blank face where we encouraged her to draw the face that represented how she was feeling that day. The second section was a numbered list where we encouraged her to write the three best things that happened that day, and the last section was available for her to write things that she wished didn’t happen that day. Sometimes, this worksheet triggered powerful moments of dialog between us, and that’s why I believe it’s a great way to enhance the daily communication with your child. (The feeling faces worksheet is available for download from the Striving for More website. Go to www.striving4more.org, and click “Tools” under the Community tab.)

Unfortunately, Colleen needed more support, and her depression became more severe. I knew something had to be done when Colleen’s tutor told me that Colleen confided that she wanted to kill herself.

I looked for therapists in our community who felt comfortable treating her, but that proved very difficult. Most are not equipped to handle terminally ill children, and when I did find one willing to accept her as a patient, Colleen was highly resistant to leaving the house on yet another day. She was in intense pain, we were already having to get in and out of the car to travel to the hospital to receive chemotherapy and raditation four or five times a week. She would arrive at the therapist’s office angry and resistant. It wasn’t working out the way I had hoped, and I decided to pursue other alternatives. I took a closer look at Colleen’s tutor. She was not someone that I knew well but she was a nurturer. She spent a couple hours two times a week with Colleen. I decided that I would ask someone I trusted to become Colleen’s supporter—an adult best friend. Someone she would feel comfortable sharing her fears with.

Enter Jill and Kai, two neighbors whom I respected in many ways. It was important to me that I respected their spiritual beliefs and parenting styles, and that they respected the decisions that my husband Vince and I were making for Colleen regarding her health and treatment. I confided in them regarding the full nature of Colleen’s condition. I wanted to make sure that they recognized that taking on this role was not only a commitment to Colleen, but it meant falling in love with a sweet child who was destined to die before her next birthday.

I was asking a lot. I knew it and I needed to make sure they knew it too.

I asked that they visit one to two hours, twice a week and just spend time with Colleen, and that they do something that would encourage the dialog to flow. They both agreed and the visits began. It was nothing unusual to Colleen as she had visits from many people; however, these visits quickly became her favorites as they were consistent and special. They did crafts, read poetry and learned magic tricks together.

These women were an amazing blessing to all of us but especially to Colleen. Although I respected the privacy of conversations that went on between them, I do know that she felt comfortable enough to discuss Heaven with one of them, and I am very thankful for that.

This article was written by Diane Moore for www.TouchedByCancerMagazine.com. Moore is the founder and executive director of Striving for More, a Triangle-based nonprofit organization dedicated to ensuring that children with cancer and their families receive quality emotional and spiritual support. Visit www.striving4more.org for more information.

Cancer - A Positive and Profound Turning Point?

Diane Moore — Mon, 22 Aug 2011 10:50:00 EDT

As the Pediatric Cancer Editorial Advisor for Touched by Cancer Magazine, I have been asked to write a column about the positive things that can come out of a cancer diagnosis. Don't get me wrong, I can come up with content for this article all on my own. Although our daughter, Colleen lost her battler, cancer has profoundly and positively changed my life in countless ways. However, my husband Vince reminded me of the numerous people who have made changes in the direction of their lives as a result of Colleen's journey. There is the friend who decided to become a nurse. there is the woman who volunteered as her tutor who returned to teaching, there is the friend who became a published children's book author and my nephew who learned how to play the piano. I know there are others that I haven't mentioned and some I don't even know about.

Did you make a decision in your life as a result of being touched by cancer? Touched by Cancer magazine is distributed to people who currently have cancer and their caregivers. I would love to write a compilation of powerful ways that people have been touched by cancer. Will you help me? Please send me the ways you have been impacted. With your permission, I will include them in the article that I submit on Friday.

~ Till next time, Diane

Children Are Always Watching...

Diane Moore — Mon, 01 Aug 2011 09:20:00 EDT

Don't worry that children never listen to you; worry that they are always watching you. ~ Robert Fulghum

Family after family wander through the door. But they are all going through the door, why can’t we go through the door? I try to come up with an explanation that does not badmouth the other families but give my daughter a reason that is one that I am happy with. The sign says “No Entrance”. “We are a rule following family so we will walk around, it is just around the corner.”

What Would You Do? I can’t keep quite any longer. I believe this is is a common theme with parenting these days. I think too many parents go by the motto of “do as I say and not as I do”. I have a problem with this. I believe it is much better to lead by example. I never once walked through that door. The REAL door was only a few more steps farther.

Another example of this is the fact that facebook says that children should be 13 years old before allowed to have a profile. I know many friends that allowed their children to have profile before they were 13 years old. If you expect your child to be honest to you but then you allow them to tell a lie to someone else, like facebook, I am not sure what lesson that teaches them. Is it ok to tell a lie to someone else but not ok to tell a lie to you? I am not sure I agree with that. You are either raising your children to be honest or you’re a not.

Responsibility. Mackenna has braces. She is very paranoid about the rules she has about what she can eat with her braces. We were standing outside of Quiznos and Brueggers Bagels. She said to me “Will you tell Dad if I eat Bruegger’s for lunch?”. (because you are not supposed to eat bagels when you have braces). I said “Mackenna, you are a young adult, it is your decision if you would like to eat a bagel or not. It is not up to your father or I. You need to make your own decision. You just need to realize the consequences.” Ultimately, she chose, Quiznos as she knew that was the right decision. I was very proud of her and she was proud of herself for making the right decision.

I vividly remember sitting in the front seat of my sister’s car when her children were very young. At the time., she was the mother of three (however, she is now the mother of five). Nonetheless, I have an enormous amount of respect for her parenting skills. One child hit the other. She turned to the one child and said “do we hit in our house?” and the child said “no”. I knew right then and there that I would never hit in my home. I know it is not a decision that is right for every home but it is a decision that worked in my home. It worked because I was able to use that same line that my sister used. I was able to use that same question and it stopped my children dead in their tracks.

Be the Example. Leading by example is very important to me. Not walking through the door that says “no entrance” is an important example. If you walk through that door, how do you expect your child to respect rules that are in place? I agree that sometimes rules are silly but there are times that we don’t always understand the origin of the rules and it is best to respect them and teach our children to respect them as well.

~ Until next time, Diane

Live Life with No Regrets

Diane Moore — Tue, 26 Jul 2011 23:05:00 EDT

We are on a family vacation in Mexico. Today we went on an excursion called The Mayan Snorkeling Adventure where our tour guides took a group of ten people to three locations to go snorkeling. At the second location, there was a cliff jump and a zip line going into the water of a Mayan sinkhole. Mackenna’s friend, Devereaux was all about jumping and zipping and I thought Mackenna would enjoy it. I encouraged her to try but she didn’t seem interested. I was sitting on the side watching and cheering Devereaux on and suddenly Mackenna appeared by my side saying that she is going to go too. Being the supportive Mother that I am, I start cheering her on as well. Mackenna appears at the top of the cliff jump and jumps in with a fearful smile on her face. She then climbs up the ladder with her friend and appears at the mouth of the zip line. She seems more hesitant this time.

Rewind about 30 minutes. I am sitting on the deck with our tour guide discussing the zip line. He asks me if I am going to do it. I explain that I have zero upper body strength and that I didn’t think I could hold on very long. He said “that’s ok, if you let go early, it is very deep there too. You will just have a longer drop but you will be safe.” You see, I was actually considering it but I was afraid.

So Mackenna is now up there and afraid so I try to come up with something to say to encourage her. I say “if you do it and like it, I will do it”. Crap. What on earth did I just commit to? That really sucks. There is no getting out of this now. I am secretly hoping she doesn’t like it. And honestly, with Mackenna, there is a good chance of that. She is far from a daredevil. She zips, she jumps, she hits the water, she emerges, no emotion. I am filming the entire time. Trying to gauge if she liked it (for my own selfish reasons of course). Will I have to go? She gets out of the water and forces me to turn off the camera and she says. “I hurt.” Woohoo! She didn’t like it. I don’t have to go! She says “You have to do it now.” Wait a minute. Something went terribly wrong. This is not how this was supposed to work.

After several minutes of trying to use reason and negotiation, I walk toward the platform knowing that I will never hear the end of this if I don’t go off the darn zip line. Our tour guide explains how it works. I am terrified but eventually overcome my fear. I zip (but not for long, I can’t hold on), I fall, I splat onto the water, sort of like a belly flop but with the back of my upper thighs hitting the water so hard that there was a red mark on them the rest of the day. Oh well, I was certainly not graceful but I did it.

As we walked toward the shelter where our lunch was being served. Mackenna apologized for making me go on the zip line. I told her that I was fine and that I did not regret it. After all, it is better that I learned what I did incorrectly over water than over trees where my fall would not have been broken so easily. I went on to remind her that I am a person that regrets very little in life. That each experience, good and bad, has a lesson to take away. She said “I wish I could be like that”.

After our day was over and we sat in the van for the hour-long ride back to our hotel, I pondered how I became a person who lives in each moment with little or no regret. Did I only become this way after losing Colleen? I certainly would not want Mackenna to have to experience profound loss in order to have this wonderful way of experiencing life. Regret is defined as “to feel sorrow or remorse for (an act, fault, disappointment, etc.)” and its antonym is rejoice or joy. I know that Vince and I have taught Mackenna to take responsibility for her actions. With that said, I would much rather her know joy than regret. The next important less is to teach Mackenna to appreciate each experience for what it can teach you. I fell like I have been living by example for a long time now. How else can this be taught?

If you have any insight, I would love to hear it!

Fun Events ~ Get Out and Show Your Support

Diane Moore — Thu, 21 Jul 2011 22:05:00 EDT

Striving for More is very fortunate to be supported by two wonderful groups who are putting on events to benefit our organization. Get out and support one or both of them if you can!

Raleigh Mom Prom - Saturday 7/23

This Saturday, Southern Momentum is hosting the first Raleigh Mom Prom. The event will benefit two organizations. Half of the proceeds will benefit Bridges & Beyond, a Wake Forest special needs preschool. The other half of the proceeds will be benefit Striving for More in the form a directed gift to be put specifically towards the Beads of Courage Sibling Program at North Carolina Children's Hospital. I was blessed to be able to speak to Rebekah Anderson who is the mother of Liviya, a kindergartner who has Severe Aplastic Anemia and is treated at North Carolina Children's Hopsital.

Although Aplastic Anemia is not cancer, it is very serious and can even be terminal and it is one of the diseases that is treated in the Pediatric Hematology Oncology clinic and therefore also benefits from the programs that Striving for More funds at UNC and Duke. I got chills when Rebekah told me that the Liviya's Beads of Courage "brought light to many dark days". We already had it in our sights to fund the sibling program so we are really excited that this event will help jumpstart that funding. The donation is being made in Liviya's honor because her and her family were so moved by how the Beads of Courage helped them during their journey.

A Mom Prom sounds like such a fun event. If I was going to be in town, you know I would be there on the dance floor having a blast! Tickets can be purchased at the event. But pop out to their facebook page and let them know you are going so they can be prepared (if you aren't on FB, don't worry... show up anyway!). Mom Prom Facebook Page. The event is being held on Saturday Night, July 23rd from 8pm until midnight at Bedford at Falls River Clubhouse in N. Raleigh. Prizes will be given out for the tackiest prom gown!

Duke Volunteer Talent Show - Tuesday 7/26

I am truly humbled that The Duke Youth Volunteers selected Striving for More to be the beneficiary of their talent show this year. From what I understand, they put on quite a show. It is held in Reynolds Theater. The event includes a agreat talent show put on by the teens who have been volunteering at Duke Hospital this summer. They also provide appetizers, drinks, and desserts from seven different cultures! Ticket prices are only $8 in advance and $10 at the door. That is quite the bargin! You can purchase tickets through the Duke Ticket Center.

In addition to the show, they will have raffles and a silent auction. Some of the silent auction items have been posted online and you can begin bidding on them now. Check it out here.

This event is a great evening for the entire family. Consider this. You can't even take the entire family to the movies for $8 per person and get entertainment, food and beverages. And proceeds benefit Striving for More so you get the feel good factor as well! Plan to attend this wonderful event on Tuesday, July 26th from 6:00pm - 9:00pm at Reynolds Theater, Bryan Center. 2011 Duke Volunteer Talent Show Facebook Page

Warning: Patient Blogging Can Lead to Isolation

Diane Moore — Wed, 20 Jul 2011 22:50:00 EDT

There are many wonderful websites out there specifically made for patient blogging. Sites such as CaringBridge and Care Pages are particularly popular in the Childhood Cancer community. When Colleen was sick, we maintained a CaringBridge site for her and it was fabulous. Before we discovered CaringBridge, it had became exhausting to repeatedly report all of the updates to everyone that was worried about her.

At the end of an eighteen-hour day of testing, Colleen’s CaringBridge site became a therapeutic way for me to not only update the world but also an effective way for me to journal as well as process what had happened. Many days were like a whirlwind with things happening way too fast. It was very much like a horrible amusement park ride on turbo boost and we were not allowed to get off no matter how sick we felt or how miserable it made us feel. Evenings, sitting in the dark hospital room, while Colleen slept, became my time to write, think, reflect, process, pray and prepare for the next day when I knew that I would be forced to get back on the horrible ride once more.

Five or six months into Colleen’s journey, she had followers from all over the world. I think we even discovered that there were people on every single continent that were subscribed to her journal updates. However, I vividly remember feeling very isolated and lonely. My cousin was visiting with us from New Jersey and we were sitting at the kitchen table chatting. She was commenting about how she didn’t call because she did not want to disturb us and she was keeping up with Colleen’s journey through her CaringBridge site. I thanked her for her consideration and dedication to reading the blogs. But then I pointed out that she had been in our house for several days and the phone never rang and nobody ever came to the door. It was during that discussion that I realized the root of my isolation. The world knew everything that was going on with Colleen because I was writing to them every night through my blogs. Some people were leaving messages in the Guestbook but it was not exactly the dialog that I longed for. It was feast or famine. Couldn’t I have a comfortable meal?

If you are going through a difficult time right now and you are feeling isolated, I challenge you to let people know. Either let people know in your next blog post or send a special email just to a group of your closest friends. That is what I did.

If you have someone in your life that is going through a difficult time, give him or her the space they need. However, please remember that you are hearing (reading) their story but they are not hearing anyone elses. Perhaps they would love to hear about what is going on in your life, they would most likely love the distraction form their life filled with cancer. Why not pick up the phone once in a while and ask them if they would like to share a pot of coffee or a bottle of wine with you? I longed to hear about what was going on in other people’s lives but I know that many of my friends felt guilty talking about their lives to me. They felt that what was going on in their lives was insignificant compared to what I was dealing with. I challenge you to consider that as long as you remain considerate, insignificant and boring discussions can be a welcome change for someone who is having to deal with a horrific turbo boost park ride all the time.

~ Until next time, Diane

Patience and the Strength to Persevere

Diane Moore — Mon, 18 Jul 2011 21:50:00 EDT

"Making your mark on the world is hard. If it were easy, everybody would do it. But it's not. It takes patience, it takes commitment, and it comes with plenty of failure along the way. The real test is not whether you avoid this failure, because you won't. It’s whether you let it harden or shame you into inaction, or whether you learn from it; whether you choose to persevere." ~ Barack Obama

Patience has been a recurring theme in my life. A word I have grown to hate actually. This word has been rumbling around in my head for about a good two weeks now.

I have been thinking about how I must be going through another period in my life where I just must be patient. I have been down this road before. I had to be patient when I was single and dating. Several years later, I had to be patient when Vince and I were battling infertility.

Now, I find that I have to be patient as I do my best for Striving for More, working to increase awareness of the dire need. Waiting for our big break when we start getting regular donations rolling in consistently or we get significant corporate sponsorships. I have to be honest, when I started this organization, I thought it would be so much easier. I thought when people heard about the huge gaps that existed, getting donations would be easy. I thought companies would naturally want to contribute. What organization would not want to sponsor a non profit that was helping sick children? But it is just not happening. In addition, I seem to have forces against me. There are articles in the news constantly about how children with cancer get fantastic integrative care when I know, for a fact, that there are huge gaps in some of the best hospitals in the country including the most prestigious one here in the Triangle. How can I be the only one concerned about this?

I have been thinking from the beginning that I will get more bees with honey. Perhaps I have been wrong. Maybe I do need to use a stick. Perhaps I need to shout the travesty of inadequate care from the rooftops. I'm not sure. What do you think Barack would do?

Tonight I hope that I find the strength to persevere (because I learned a long time ago NEVER to pray for patience).

~ Until next time, Diane

A Special Bag

Diane Moore — Sun, 17 Jul 2011 20:55:00 EDT

If you are looking for a craft project for your family, your church, your girl scout troop, your quilters group or just a group of girlfriends that want to do something nice to help children with cancer, I have the perfect idea! Why not make bead bags? Bead bags are an easy project that mean the world to a child with cancer. Bead bags give children a special place to store the beads that they cherish when they are not able to wear them. They also give them a special way to easily carry them back and forth from the hospital or a special keepsake location to store them while they are off enduring difficult tests or procedures.

Learn more about the Beads of Courage Program

No minimum commitment needed. You can make 2, 10, 20, 50 or 100. Just make them! I promise you... as you complete a bag and tuck a special note of enCOURAGEment into it, you will get a warm and cozy feeling knowing that you touched the life of a child having a REALLY hard time right now.

Download the Pattern Guidelines below and let us know that you want to make some bags so we can send you the labels that go on them. Contact us by sending us an email or giving us a call at 919-339-1214.

Bead Bag Pattern Guidelines

Bead Bag Note of enCOURAGEment

Striving for More is really proud of the fact that we brought the Beads of Courage program to the North Carolina Childrens Hospital and we fund their program in its entirety. In addition, although we did bring Beads of Courage to Duke, we also fund their Pediatric Hematology Oncology program as well. We love the Beads of Courage program and are encouraged to hear the wonderful feedback from the children and the families. We believe that this program has enriched the lives of these children and it truly is in line with our mission to deliver quality emotional care to children with cancer and their families.

The Chair

Diane Moore — Thu, 14 Jul 2011 22:30:00 EDT

To most people who look at this picture, it seems like just a simple chair. However, I looked at this picture and immediately burst into tears. That doesn’t happen to me very often, especially in public. But this night was different; this picture had reached back and invoked a memory that I had not thought of that vividly in almost four years.

My friend Kim and I were standing in a storefront in the University Mall. I had come to support the I CANcer Photo Journey Art Display. This art display included photos that were taken by members of a support group for adolescents being treated at UNC who were impacted by their cancer diagnosis.

The caption under the picture said “The Chair”. I knew exactly what the photographer meant. I recognized that very chair. I recognized the room. I felt like I had been punched in the stomach as I stared at it. I cried while the memories came flooding back. That was the chair where I was told that my 8-year-old daughter had cancer.

That is the chair where I sat and heard the news that would change my life forever. It is far from a simple chair. I feel a bond to the stranger who took the picture because they feel an emotional connection to the chair too.

Although Striving for More did not fund the Teen Support Group that presented these photographs. We believe that programs like this are vital to the emotional well being of patients and their families. We applaud UNC for securing the funding to provide this program to their patients. We hope to be able to grant funding to both UNC and Duke to provide wonderful programs such as this to give their patients and caregivers an outlet for the difficult emotions that are a natural part of the cancer diagnosis.