Author: Melissa Wiggins

CKc co-founder Melissa Wiggins and pediatric cancer advocate Monica Angel were in Tampa, Florida, recently for a #nomoreoptions event. Approximately 50 people attended the small group gathering which focuses on educating others on why advances need to be made in the field of pediatric cancer treatment to not only create more survivors, but to also increase the quality of life for those children. The event also highlighted a CKc-funded trial that involves an innovative way of administering chemotherapy to a child under three years old. The trial is named after Monica’s daughter, Emmi-Grace.

 

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Update on Cannon from CHOP

The FIRST goal is survivorship. That’s the number one priority! But what does survivorship looks like? If you have heard me speak you have probably heard me say these words.

Our priority at CKc is not only creating options together BUT better options together …..

Frankly what we have today is NOT acceptable to me or anyone on Team CKc!

I know this because I live it with my son. My survivor. For a time I felt bad talking about it because how can I ? How can I talk about how unacceptable survivorship is to me when so many only wish to have their survivor with them. I sound UNgrateful. But I am grateful. I have since realized because I’ve spoken to and spent a lot of time with parents who have lost their children to childhood cancer that they want me to work harder for better options. That creating the same options would ONLY make the same results and that we need real innovative change! Changing the status quo is about creating survivors and creating a quality of life for them.

Today Cannon teared up as I put his hearing aids on. He asked me if he had to wear them — a new question since starting first grade. He asked me why he wears them and explained to me he can hear without them. He picked his nails and hunched over with anxiety as I placed them on his ears. Michael and I hugged him and talked him through it as we have done every time before this. Cannon left the room and Michael and I watery eyed and all looked at each other and half smiled – our hearts ache. Cannon is getting older and self conscious. Of late he has asked me why he is smaller than kids his age. Cannon is 20 months older than his twin brothers but they are almost all the same height. I appreciate that it is MY job.. Michael’s job to raise Cannon to be a confident, kind, loving man and we can and will do that, but cancer has added many hardships to Cannon’s life.

At CHOP on Friday we discussed further issues for kids like Cannon who get so much radiation to their spine. We took Cannon to who we believe is one of the best in proton radiation – Dr Hill-keyser – we still believe that, but it doesn’t change that we burnt Cannon’s spine to save him as well as many other areas in his body. That comes at a price. Cannon now has early signs of scoliosis. One shoulder is higher than the other , one nipple higher than other and some curving of his back and spine. Is it life

threatening? Will he die? NO… is it potentially more therapies , more surgeries , more specialists, more self conscious behavior ? Yes it is. I don’t accept that is okay. I don’t want that for the family who right this very moment is hearing the words “ your child has cancer “ I want them to get a treatment that will make their child a survivor and live a good happy life with quality of life in it. Not a lifetime of secondary cancers, eye issues, infertility, hearing loss, learning disorders, or organ failures like we saw just a few days ago with Sweet Sally Sunshine!

By the end of this month I’ve personally been a part of some 20 pediatric cancer related meetings or events across 6 states and team CKc even more than that… why…. because I truly at my core believe, whether arrogant or not that we can change this status quo . That in the next decades that children will be cured in different , better ways and that it won’t leave them with lifelong issues.

2/3 of kids who survive five years from their original diagnosis will face lifelong challenges including secondary cancers and organ issues.

There are no survivors of certain brain cancers, and many forms of brain cancers have less than a 10 percent chance of survival.

I am not OKAY with either of those statistics. Team CKc is not okay with it.

So together we work our little rear ends off as a team to change it.

In short.

I don’t accept what Cannon deals with, and I won’t accept anything else for your kids or the kid being diagnosed right this moment.

I am…

I continue to be…

Thankful for the fight.

Please say a little extra prayer for Cannon as we navigate these new waters as a family. Thank you.

August 14th was a huge day for Cannonball Kids’ cancer (CKc), for pediatric cancer, and for the family of Nolan King. That was the day CKc made good on their promise. It was on that day that CKc awarded Nemours Children’s Hospital with a $25,000 check to help fund a “seed grant” for research in which the Zika virus is used to attack deadly hepatoblastoma cancer cells. Zika has shown great effectiveness in destroying cancer cells in other types of cancer.

When Nolan died on April 1st, 2017, from complications of his treatments for hepatoblastoma, he was just 3 years old. That very day, CKc made a promise to fund a research trial for hepatoblastoma, the most common form of liver cancer in children, in his honor. The current “treatments” for hepatoblastoma are simply watered-down adult treatments that ravage children’s bodies, causing irreparable damage and even death.

Our goal is to make sure that what Nolan, kids like him, and their families go through is not in vain. That is why it’s our mission to fund innovative research grants to learn about and discover new ways to treat pediatric cancer, and to find treatments that do not kill children or strip them of their quality of life.

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It is 4 am, and I find myself wide awake, that is not unusual because I was taught as a young kid the early bird catches the worm – before my kids are awake I have usually done an hour or two of work and worked out – some call that sanity – I call it survival.

On this day seven years ago I gave birth for the first time, I became a Mumma-Bear. We named him Cannon James Roland Wiggins. I was 27 years old. I remember jumping up and down when I took the pregnancy test confirming. Despite being the girl then women who had said I would never have kids because my career was always going to be first – by that time I so badly wanted a baby. Michael and I met when I was twenty years old, I felt secure in our marriage, and it was time.

Birth for me was traumatic, utterly awful – let us say I was the Scottish lassy that walked in with the birth plan and I left with a c-section and adorable 8 pounds 8 ounces of PURE sunshine. He is still my sunshine – he wakes up with a smile, goes all day, and goes to bed smiling – indeed the happiest boy I have ever met.

On this day at 5 am my boy was born – little did I know then how much that my baby would change my life, my husband’s life, and thousands of people’s life.

Thank you to my friend Dr. Carducci who stayed late to deliver our boy – she had worked all night and I, of course, being the hard-headed Scot that is, thought I had done enough homework to deliver naturally. Oh, sweet little Mumma – if only I could go back in time and whisper in her ear – it doesn’t matter, who cares, you will be just as connected to that kid if you have a c-section – a perfect example of why people say we get wiser with age. I know that to be true.

Many people aren’t aware that four months into Cannon’s life my husband was hospitalized and inpatient at Mayo Hospital in Jacksonville for a significant period of time. I was working for a lawyer in Orlando and traveling to be with Michael, with a four-month-old and a husband who had lost the ability to walk or move his arms, he had a rare auto-immune disease called GBS. I took my good husband home with a wheelchair, and we resigned to the fact that he would most likely never be able to walk again. After a year it appeared we were in the clear. I confess I remember thinking, nothing worse could ever happen to us, we were married only a few years and had a newborn and a sick husband. Life was pretty much sunshine, rainbows, unicorns – for a good six months.

Then one day I said ‘ I am pregnant ‘ we were so happy, I was in Scotland when I found out. We shared with my family, and we celebrated Cannon turning one year old with them. We came back and found out it was twins. Let me be SUPER real – I was NOT excited. I cried, and not happy, yeah this is such exciting tears, no I knew twins and Cannon was going to be hard. Then we found it was two boys – lord help us. Ok, don’t judge me, at the time it honestly felt like it was the worst thing that could happen. Of course, that was not the end of the story.

Cannon began to limp, and I was 38 weeks pregnant with my twins at this point. Michael was traveling for work, so I called him, and he suggested a doctor appointment. Long story short next time I saw my husband he met Cannon and I at Arnold Palmer Children’s Hospital and Cannon was scheduled to have surgery for what we thought was a knee infection. Sadly, there was no infection, but our son, our ray of sunshine was covered in cancer. Kids get cancer.? Yes, your son has stage four neuroblastoma a very aggressive form of cancer. It is everywhere in his body. Cannon has a very big fight on his hands. At that time, neuroblastoma was the number one killer of children in the US – thankfully due to research it no longer is.

The famous rhetorical question….’ He is not going to die though – right? He responded ‘your son has a 50/50 chance.’ Thankfully no one can see me type these words; tears are flowing as every time I write them it takes me back to that moment. Weirdly I sometimes like to remind myself of that moment so that I can truly appreciate the miracle he is. I also am acutely aware after attending more children’s funerals than adults in my 34 years that many parents only dream of a 7th birthday with their baby. We didn’t know if we would get a second birthday with him let alone another five. Without being a pessimist, because I am not, we don’t know what tomorrow brings for a kid like Cannon on cancer and side effect front. If I sat there too long, I would have him relapsing and having a heart transplant and sad that he can’t naturally father a child – so I don’t sit there. I sit here, with you in the solution. In the FIGHt! IN the possibilities of a kid who beat cancer, a kid who smiles every day, a kid who is a gift to those who get to know him, a kid that inspired Cannonball Kids’ cancer Foundation. Cannon James Roland Wiggins you inspired your Mum and Dad to work hard for change. To change the status quo of kids battling cancer.

Since you don’t need anything Cannon Wiggins, we are having a FULL circle moment today. Your journey began, CKc’s journey began with the sale of one little T-shirt. We didn’t know what would happen after that – thankfully a lot ! So we decided it would be a fantastic way to celebrate what you have inspired in all of us. CHANGE…..YOU ARE CHANGE Cannon. I want to be change too.

These shirts are only on sale for ONE week, and since we hold T-shirt sales every five years it seems, I would get them while they are hot. All proceeds will go to Cannonball Kids’ cancer Foundation. I cannot wait to order mine.

I want to take a moment of PURE gratitude, whether you know the story of Cannon, are new to our story, or wish to know more – all of those mean SOLUTION, CHANGE and HOPE. Thank you for being a part of that. I believe deep in my heart that Cannonball Kids’ cancer and others are changing the status quo – it is NO longer okay, it NEVER was.

Buy a shirt pretty please with a cherry on top.

All over the US is lighting up Gold for pediatric cancer awareness month in September and you can wear these shirts as a symbol that we are creating solutions TOGETHER.

https://www.customink.com/fundraising/nomoreoptions-campaign

Thankful For The Fight
Cannonball Kids’ cancer

Gratitude – Full Circle

In June of 2015, exactly three years ago, CKc Executive Director Melissa Wiggins and CKc Board Vice Chair Ashley VanDerMark traveled to Augusta, Ga., to present a check for $100,000 – every penny CKc had made in our first year as a non-profit. Our first grant was awarded to Dr. Theodore Johnson for a ground-breaking immunotherapy trial, and so much has happened since then! There are now 60+ children enrolled in the trial, including our buddy, Coulter. He was treated at several hospitals until there were no more options to save Coulter’s life. Then his parents found out about about this trial, which CKc helped fund! Now, three years later, Melissa got to visit with Coulter and his parents and see how the trial has so greatly impacted their family. Really amazing!

This video, provided by ecancer.org, shows Dr. Johnson discussing the progress of his immunotherapy trial. We are so proud of the work Dr. Johnson and his team are doing every day to make a difference for children fighting cancer.

We are also so proud of everyone who has helped CKc impact pediatric cancer in the way it has in just a few short years! We can’t make stories like this possible without your help! Thank YOU for supporting us with your donations, your confidence, your eagerness and your dedication to helping us change the future of pediatric cancer!

Last year, we launched our #NoMoreOptions campaign. CKc’s Education Director Kelly King was featured in the project, where she shared personal insight about the loss of her three-year-old son Nolan to hepatoblastoma, the most common form of liver cancer in children. Kelly and her family’s bravery and openness left an impression on so many people, including a young man named Chase, from Orlando.

Chase’s mom sent us this wonderful letter, and we just had to share it with you, our CKc warriors. Thank you, Chase, for recognizing children fighting cancer need our advocacy. We appreciate all our CKc warriors who help us in big ways, and small ways, to help spread the word about CKc and our mission!

I wanted to share a sweet story with you that shows the impact that Nolan continues to have in our lives, specifically Chase’s.

For math class, Chase’s teacher assigned a project where each child was given a million “imaginary” dollars. They had several things they had to do/buy with the money, including buy a house, a car and save four years of college tuition for a college of their choice. They also had to tithe 10% to their church and also donate to a charity of their choosing. Chase was so excited to go on Zillow to find his house and Carfax for his car. He sat at his laptop building his presentation and didn’t say much to me. And then he came and asked me, “Mom, what’s the name of that cancer charity that had the grant for Nolan? That’s who I’m donating to for my project.”

My heart melted. Unfortunately, it’s imaginary money. But he chose to buy a cheaper house and car so that he could donate $100,000 to Cannonball Kids’ cancer. Additionally, he took a moment during his PowerPoint presentation to tell everyone about what CKc does and why it’s important. And then urged them to give money for real, not just pretend. Many of the students remembered Nolan because they spent the year praying for him last year.

Nolan may have only been here three short years, but his impact is huge. I see it in my son who never had the opportunity to meet him and I see it in his classmates. I feel it in my own life. We will never forget your sweet boy and we will spread awareness about pediatric cancer whenever we can.

Michael and Melissa Wiggins, founders of Cannonball Kids’ cancer (CKc), recently met with Dr. Jacqueline Kraveka, an oncologist and associate professor at the Medical University of South Carolina (MUSC), which has the only pediatric cancer research lab in the state.

Dr. Kraveka is a member of Beat Childhood Cancer, serving on the executive and scientific committees. Beat Childhood Cancer is a group of 40+ research centers and children’s hospitals, headquartered at the Helen DeVos Children’s Hospital in Michigan, that offer an international network of childhood cancer clinical trials. The organization is chaired by Dr. Giselle Sholler, a recipient of a CKc-funded research grant.

Dr. Kraveka is most passionate about researching neuroblastoma and rhabdomyosarcoma and has several trials in development over the next year. CKc is carefully considering these trials as we look at funding additional research grants. Anca Dumitriu, the recently hired Survivorship Clinic Director, will have a follow-up meeting with the CKc team to discuss the potential for grant opportunities.

We look forward to growing this relationship and to the potential for funding new, innovative research. We will continue to keep you updated on these efforts.

It’s hard to put into words this past week in DC, but here goes…

Strategy is a key word that keeps popping into my brain. I wish it was as simple as telling our nation’s leaders that there was a huge gap in pediatric cancer research funding and that was the end of it… but, it’s not. Strategy is required.

A phrase that comes to mind as I type this message on our flight home is this, “The breeze is always strongest at the top of the mountain.” It’s hard guys – I can’t lie. But, what is harder are calls from your friend (Kelly King) saying, “He can’t die, Melissa, he can’t die.” Or, watching one of your friends (Monica Angel) walk behind a tiny coffin that holds her five-month-old baby girl! We work HARD so this madness stops! I (we) will never stop!!!

Sometimes quickly, sometimes slowly. DC efforts are the latter! They take years of effort from hundreds of people. Not one group, but many! Many people are hitting the Hill doing exactly what we are doing! We are just thankful CKc is and can be, part of the solution.

I am truly so proud of Monica and Kelly – in more than 15 meetings with our government leaders they shared of their horrific loss. However, each time they did, they related it back to why change matters – why they believe in CKc and why they do this! Why others shouldn’t suffer! How we can do better! How we need to do better! This is only their second visit to DC with Team CKc and they acted like professionals – CKc is lucky to have them but more importantly, pediatric cancer is lucky to have them as advocates!

My promise as this foundation’s executive director is that we are stronger than ever! Our team is growing in strength, knowledge, power, and numbers! Change can happen at the DC level and I believe we can be a part of that solution along with others.

Sometimes quickly, sometimes slowly.

The former is important to us – we need kids in clinical trials today! Not tomorrow! Today! We talked in DC about the issue of accessibility to trials and how difficult it can be in terms of eligibility.

Many people have asked us about the reaction we get to the information we share. Perhaps surprisingly (or not), is that we found the more seasoned people we met with to be more in-tune to our message and a few of the younger aides couldn’t get us out their office quick enough – perhaps it’s too painful? I couldn’t quite understand. But, the fact remains, more want change than don’t- so we take that and we run with it!

Our foundation won’t wait around for MORE change in DC – we continue to fight for research. Kelly and I will hit ‘Research Road’ again in a week. We are traveling every other week through October to ensure not only research is funded, but the right research. Thankfully, once we seek out the right research, our incredible Scientific Advisory Board evaluates whether or not it’s worthy of the very hard earned and generous dollars people donate to CKc. We strive to be excellent stewards of all donations and funds we receive!

To quote the National Institute of Health (NIH) Director, Francis Collins, during the hearing we attended this week:

“We run out of money before we run out of ideas.”

FY18 gave a $3 billion increase in NIH funding and it looks like FY19 should be the same. This means that pediatric cancer is in a fighting position to claim some of that for pediatric cancer research.

Consistently, we reminded members that pediatric cancer is not ONE type of cancer, it’s MANY…

Some types, like ATRT (known as the baby killer cancer), kills more children 0-6 months than any other form of cancer. DIPG has zero survivors and each child is given 6 months to 2 years to live. UNACCEPTABLE!!!! UNNECESSARY!!!!!

I can prove it!!!!

Let’s take leukemia and neuroblastoma both of which are currently line items on the NIH budget – both of which have received directed funding.

When my son, Cannon, was diagnosed 5 years ago this Thursday (a day I will never forget and one I NEVER want to forget because it drives my passion and determination for change), I was told that neuroblastoma kills more children than any other form of pediatric cancer. Since that date, a ton of research dollars have been put into neuroblastoma, both private and public funding. The additional funding from the government and nonprofits, like BeatNB, have changed that statistic! Neuroblastoma is no longer the number one cancer killer – now brain cancer is.

The point is this – Research Is The KEY !!!

But it requires private and public funding! Government can do better!

Pediatric cancer REMAINS the number one killer of children by disease in the U.S. – Unacceptable! Unnecessary!

It will remain that way UNLESS more research is funded!

CKc is attempting to close the gap by funding research, young investigators and addressing accessibility issues.

My hope is that you read this blog and you feel good about your support of CKc and the work we do! We can’t do any of this without YOU! Period!

Please stay tuned… we are drafting a letter that YOU can send to your elected official – we need people in their districts reaching out to their members to push this message!

If progress in the past is an indicator of progress to be made in the future, we can look to those causes that yelled the loudest and the progress they have made!

CKc’s voice is loud! But, with YOU, it can be louder!

Stay tuned!

Time for this Mumma bear to love on her babies and husband!

CKc on The Hill

Today, The Hill, a top US political website, published an op-ed article written by CKc Executive Director Melissa Wiggins to help educate and urge policymakers to increase federal funding for pediatric cancer research. Melissa, along with CKc Education Director Kelly King, is meeting with several key policymakers in Washington D.C. this week to coincide with a key House hearing on the FY2019 National Institute of Health (NIH) budget. A key pillar of our mission is to educate for change… we are honored to reach such an influential audience via The Hill.

Click Here to Read the Full Article!

CKc Gold Gala Numbers are in!

DRUM ROLL PLEASE

I want to thank everyone who made the CKc Gold Gala the best we have ever had! We raised MORE money and educated MORE people than EVER.

I’ve been saying “Go Big or Go Home” since our inception! It’s a motto that runs deep in our team and in our mission. In fact, we have a sign as you walk into CKc headquarters that says just that! So, when we set our goal for the gala, it may have seemed most unrealistic for a three-year-old foundation to set its sights on raising a half million dollars IN ONE NIGHT but to us, to my team, well it’s motivation, it drives us, it pushes us to our limits and, frankly, that’s what the pediatric cancer world needs. Half measures avail us nothing, and half measures we don’t do!

We didn’t make our goal, but I am here to say that’s okay!!! CKc doesn’t give up! We don’t lay down! We pull our bootstraps up and get right back to work! In the words of Rory Vaden, “Success is never owned, it’s only rented; and the rent is due every day.” Yes!!!

I realize that being $75,000 short of our goal means four researchers will be funded, and not five. Fifteen fewer kids will get on trials. That, my friends, is the gut-wrenching part for this Scottish lassy! I’m the proudest Mumma Bear ever of my team, but to say my heart doesn’t ache a little for these kids battling to live would be a lie. And, frankly, honesty is how we roll here!

For those of you at the event, I am aware there was a little confusion with the “open ask” at the end of the night. So, please know this is not an ungrateful plea, but a heartfelt one. If you wished to donate on Saturday and weren’t able to do so, please donate by following this link. As difficult and uncomfortable as it is to ask for money, I know it’s more difficult to attend a child’s funeral and watch friends bury their babies – both of which I’ve personally done. So, I am pleading with you – if you’re able to donate $10 or $10,000 to help us fund the fifth and final researcher and give those 15 more kids a chance, then please help us reach our goal!

I want to thank everyone for attending, for being open to being educated about the reality of pediatric cancer, and for donating with such open and generous hearts. I was blown away on Saturday by the love you showed CKc and by your desire to learn more about the reality of pediatric cancer.

Please watch this video of Tony King speaking at the gala. Brutal! Devastating! Unimaginable! But, sadly, a reality.

Feel free to email me at Melissa.Wiggins@cannonballkidscancer.org with any feedback about our gala! We want to improve each year and grow so we can get more kids on trials and create more options for those who have none! Thank you for being a part of changing the status quo of pediatric cancer.

 

Click here to view and download photos from the Gold Gala

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