pediatric cancer

Today Liz Scott shares the emotional and mental strategies behind creating a movement and focusing on inspirational and clear communication. Listen in as Laura and Lis discuss the origin of Alex’s Lemonade Stand, how Liz navigates the line between inspirational and scientific communication, and the importance of self-care when leading and inspiring others over time.

Liz Scott is the Co-Executive Director of Alex’s Lemonade Stand Foundation, but she is most proud of her title of "Mom" to three sons, Patrick, Eddie, and Joey, and daughter Alex.

ALSF emerged from the front yard lemonade stand of Liz’s daughter, Alexandra “Alex” Scott (1996-2004). In 2000, 4-year-old Alex announced that she wanted to hold a lemonade stand to raise money to help find a cure for other children with cancer. In her lifetime, Alex would raise over $1 million before she passed away in 2004 at the age of 8. Since then, Liz and her husband Jay have worked alongside thousands of supporters across the country to carry on her legacy of hope.

To date, ALSF has raised more than $200 million toward fulfilling Alex’s dream of finding a cure, having funded over 1,000 pediatric cancer research projects and assisted more than 10,000 families through their national support programs.

Liz holds a BA in psychology from The University of Connecticut and honorary doctorates from Drexel University, Villanova University and Baylor School of Medicine. In addition to her work with Alex’s Lemonade Stand Foundation, she also serves on the Board of Directors for The Cancer Couch Foundation.

You can connect with Liz via the website: https://www.alexslemonade.org/

To learn more about Dr. Laura Sicola and how mastering influence can impact your success go to https://www.speakingtoinfluence.com/quickstart and download the quick start guide for mastering the three C’s of influence.

You can connect with Laura in the following ways:

LinkedIn: https://www.linkedin.com/in/drlaurasicola

LinkedIn Business Page: https://www.linkedin.com/company/vocal-impact-productions/

YouTube: https://www.youtube.com/channel/UCWri2F_hhGQpMcD97DctJwA

Facebook: Vocal Impact Productions

Twitter: @Laura Sicola 

Twitch: https://www.twitch.tv/vocalimpactproductions

Instagram: @VocalImpactProductions

See omnystudio.com/listener for privacy information.

See omnystudio.com/listener for privacy information.

We all grieve - many of us know Death more intimately than others yet Death is very much a part of being Alive.  Mix in Love and thus grief is born.  Sharing the memories of our loved ones and your own experiences walking through that grief with others allows you to connect at a very human level.  There are various ways to connect with others, but the way I really enjoy is face to face where you see & feel the exchange of emotions.

November 18th, 2021 is Children's Grief Awareness day - Please share this link with someone whose child is grieving the loss of a loved one.

Other useful links:
Compassionate Friends
Friends of Karen - very near and dear to our hearts ❤️

Please take a moment to like, follow or subscribe plus also leave a review.  Your feedback is the World to us.

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Stay safe & Love and Light

Creative Commons Music by Jason Shaw on Audionautix.com

Melody shared what it was like to deal with cancer during her childhood, the ways that experience has influenced different stages of her life, and the things she continues to uncover as an adult.

You can follow Melody on Instagram @lunapeakfoundation, on Facebook @lunapeakfouncation, or on Twitter @lunapeakfamily. You can also find more information about the foundation at https://www.lunapeakfoundation.org/.

Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

++++++++++++

My reflections on the conversation:

I’ve been reflecting on Melody’s experience trying to talk to her family members about their experience being her caregivers. As I’ve mentioned in the past, I’m a big believer in processing the challenging experiences in life. Some like me, prefer to talk about the experiences, many find creative outlets like writing, visual arts, or music. 

But when I heard Melody’s family members’ reactions, it made me wonder if processing is not good for everyone? Or maybe, for some the processing is so painful that they need an expert - like a therapist - to guide them through it. So nudging someone to process when they are not ready or have the adequate “tools” to do so is probably not going to work so well. This is another example of how my guests’ experiences continue to help me understand perspectives that are different from mine. 

Akili reflected on the disruptions he faced when his son Kaine was diagnosed with leukemia more than two years ago and the growth he had to go through to survive this “good” bad diagnosis.

Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

++++++++++++

My reflections on the conversation:

I still don’t know how Akili manages to do everything he has to do from being a father of six and juggling multiple jobs on top of Kaine’s medical appointments! He’s probably one of those people who only sleeps four hours a night. Even then, as Akili said, it takes a village to get through an experience like this, and I’m so glad he got to a place where he felt comfortable with asking for help and receiving help. 

I also loved Akili’s point about performing random acts of kindness and how it’s what makes our communities stronger. It’s a really important message for us to remember at a time when we are going through so much trauma and loss across so many communities. 

On a more positive note, Kaine got his port removed one month early and is on track to finish chemo by early December!

September marks Childhood Cancer Awareness Month, so this episode will focus on pediatric cancer treatment and the many ways proton therapy can benefit children. I’m also delighted to share with you that our guest this episode, Dr. Torunn Yock, joins us from Massachusetts General Hospital, the first center in North America to have an IBA system and they are celebrating their 20 year anniversary with proton this year! 

The views expressed in this podcast are those of the interviewees. By listening to this, you agree not to use this podcast as medical advice to treat any medical condition in either yourself or others, including but not limited to patients that you are treating.  Consult your own physician for any medical issues that you may be having.  This entire disclaimer also applies to any guests or contributors to the podcast.  Under no circumstances shall Ion Beam Applications SA (IBA), any guests or contributors to the podcast, or any employees, associates, or affiliates of IBA be responsible for damages arising from use of the podcast.

Today I’m pleased to bring you the second half of my conversation with Millie’s mom, Courtney Mount.  If you missed last week’s episode, I encourage you to go back and listen to it to hear the story of sweet and sassy Amelia Joy who was carried home to Heaven by neuroblastoma cancer in July of 2020 … You really don’t want to miss that!  Today’s episode builds on her story as we discuss some very practical issues commonly faced by bereaved parents – grief brain, the one-year mark, parenting our surviving children, dealing with awkward comments by well-meaning people, the importance of gratitude, and finding your smile again.

To follow Courtney's blog about Millie's Miracle and see pictures of sweet Millie, please click HERE.  To find Courtney on Instagram, click HERE.   

To learn more about the While We're Waiting ministry and the free faith-based retreats we offer for bereaved parents, please click HERE.

To make a tax-deductible donation or to become a monthly supporter of the While We're Waiting ministry, please click HERE.  

All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry.

We'd love for you to connect with us here at While We're Waiting!

Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parents

Click HERE to learn more about our network of While We're Waiting support groups all across the country.

Click HERE to subscribe to our YouTube channel

Click HERE to follow our public Facebook page

Click HERE to follow us on Instagram

Click HERE to follow us on Twitter

Click HERE to make a tax-deductible donation to the While We're Waiting ministry

Contact Jill by email at: jill@whilewerewaiting.org

Be not afraid of the Cancer Mom! Writer and educator Jessica Phillips Lorenz sits down with Biz to discuss her daughter's cancer journey, Hugh Grant's performance in The Undoing, and the roller coaster of being used for scam bait. Plus, Biz braces herself.

Read Jessica's article RIP'd Off at MuthaMagazine.com and read her article My 10-Year-Old Cancer Survivor Needs You To Get The Covid Vaccine at Romper.com. Follow Jessica on Twitter @PlayPractice. You can donate to her Kids Walk for MSK Kids team for pediatric cancer research here.

Jessica recommends these resources:

Momcology
https://momcology.org/

American Childhood Cancer Organization
https://www.acco.org/
Coalition Against Childhood Cancer 
https://cac2.org/

Check out Theresa’s book! It Feels Good To Be Yourself is available now wherever books are sold.

Our book You’re Doing A Great Job!: 100 Ways You’re Winning at Parenting! is available wherever books are sold.

Thank you to all our listeners who support the show as monthly members of MaximumFun.org. This week, we're sponsored by Billie and BetterHelp. Go to MyBillie.com/MOTHER to get the best razor you will ever own with free shipping always. Get 10% off your first month and have your first session in under 48 hours at BetterHelp.com/BADMOTHER.

Share your genius and fail moments! Call 206-350-9485

Be sure to tell us at the top of your message whether you’re leaving a genius moment, a fail, or a rant! Thanks!!

Share a personal or commercial message on the show! Details at MaximumFun.org/Jumbotron.

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Join the amazing community that is our private One Bad Mother Facebook group

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You can suggest a topic or a guest for an upcoming show by sending an email to onebadmother@maximumfun.org.

Show Music

Summon the Rawk, Kevin MacLeod (www.incompetech.com)

Ones and Zeros, Awesome, Beehive Sessions

Mom Song, Adira Amram, Hot Jams For Teens

Telephone, Awesome, Beehive Sessions

Mama Blues, Cornbread Ted and the Butterbeans

Mental Health Resources:

Therapy for Black Girls – Therapyforblackgirls.com

Dr. Jessica Clemmens – Instagram and her website

BLH Foundation – borislhensonfoundation.org

The Postpartum Support International Warmline - 1-800-944-4773 (1-800-944-4PPD)

The Substance Abuse and Mental Health Services Administration (SAMHSA) Helpline - 1-800-662-4357 (1-800-662-HELP)

Suicide Prevention Hotline: Call or chat. They are here to help anyone in crisis. https://suicidepreventionlifeline.org and number 1-800-273-8255 and there is a chat option on the website.

Crisis Text Line: Text from anywhere in the USA (also Canada and the UK) to text with a trained counselor. A real human being.

USA text 741741

Canada text 686868

UK text 85258

Website: https://www.crisistextline.org

National Sexual Assault: Call 800.656.HOPE (4673) to be connected with a trained staff member from a sexual assault service provider in your area.

https://www.rainn.org

National Domestic Violence Hotline: 

https://www.thehotline.org/help/

Our advocates are available 24/7 at 1-800-799-SAFE (7233) in more than 200 languages. All calls are free and confidential.

They suggest that if you are a victim and cannot seek help, ask a friend or family member to call for you.

Teletherapy Search: https://www.psychologytoday.com/us/therapists/online-counseling

In this episode, Caitlin takes us down the heart wrenching medical journey that she and her family have travelled, since the day that her daughter Macey arrived. Just when they would get to the other side of one hurdle and life would somewhat get back to “normal”, something else would arise. Caitlin talks about how she grieved her vision for her daughter after she was diagnosed with a chromosome abnormality, then what life looked like while her daughter fought a two and a half year cancer battle, followed by the time she would have to fight for her life after a bacterial infection become septic, and finally, what it was like when Macey was diagnosed with an intellectual disability. Caitin talks about how Macey is here to teach us that today is the best day. Cailtin's mission is to help other families going through similar experiences to find the glitter in the muck.

Caitlin Bangsund is the author of Marvellous Macey, The Delightful Days. It is the first in a series based on true life. Caitlin knows the trial and trauma of childhood cancer, childhood disability, and the fear of almost losing her daughter — the star of the series — Macey.  

Follow Caitlin on Facebook

Follow Caitlin on Instagram

BUY Caitlin's book: MARVELOUS MACEY -The delightful days here

Find the roadmap for supporting someone through crisis here

She encourages readers to look for the treasures that hide in the rubble and gloom. Life is beautiful chaos and her message is to press on and conquer. Read her stories and help create a world that is full of kindness and acceptance.

Candace Dunaway is the Host of the All Things Relatable podcast. Candace practices daily gratitude and believes that this practice is the key to living a joyful life. Candace sees the world through an optimistic lens and looks for the silver linings, even in the most difficult of times. She believes that life is a collection of simple moments of joy that compound to create a happy life.

Follow Candace on Instagram

Use coupon code candace10 to receive 10% off your set of Now by Solu Meditation Speakers

Get your meditation speakers here

No amount of medical training can adequately prepare you for the news that your 9 month-old-daughter has a rare form of leukemia, AML.  But that's the position Dr. Omar Durani found himself in when Kenza was diagnosed in 2016.

Throughout his touching story, Dr. Durani talks of he and his wife moving into their daughter's 100 square foot hospital room, the roller coaster of multiple rounds of aggressive chemo, organizing bone marrow drives through DKMS, and ultimately getting Kenza into a clinical trial.  

After failing to find an exact match, Dr. Durani became his daughter's donor for a haplo transplant when they found out his wife was pregnant with their second child.

Dr. Durani shares so many lessons learned throughout this adventure - including the need to register more bone marrow donors in minority communities, the importance of being a strong patient advocate for you or your child, and the importance of clinical trials. Also, don't be afraid to ask for multiple medical opinions. Your medical teams will not be threatened - they want to get it right.

And how is Kenza today? You will want to hear all about it. Inspiration at its best. 

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources:

DKMS Donor Registry: https://www.dkms.org/  DKMS is the world’s largest bone marrow donor center with over 10.5 million registered donors and operations in seven countries.

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

The Leukemia & Lymphoma Society: https://www.lls.org/

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

Additional media pieces on The Durani Family Journey:

1. https://www.youtube.com/watch?v=CnasRnxGw6w
2. https://www.12news.com/article/news/local/valley/bone-marrow-donors-sought-among-islamic-community/75-230814673
3. Cure Magazine article: https://www.curetoday.com/view/coming-of-age-new-research-efforts-are-improving-treatment-of-childhood-blood-cancers
4. https://browngirlmagazine.com/2016/05/cancer-touches-everyone-help-cure-kenza/
5. https://www.healthline.com/health-news/bone-marrow-drive-for-muslim-girl-goes-viral
6. https://cw33.com/news/save-kenza-little-girl-with-leukemia-spreads-awareness-hope/
7. https://fwtx.com/news/voice/dallas-toddler-raises-awareness-across-country/

How do you answer the question - "How are you" or "What have you been up to?"
Do you find your response being something like..
"Busy"
"Working a lot"
"Not much time for anything, really"

Then you need to listen to Mark & Kyle share their lessons learned since the Pearson family's hellish journey through Pediatric Cancer and the loss of Brooke.   

There are life lessons at every turn, if you open your eyes to see them.  Being present with those you love and mindful of your surroundings.  Not sweating the small things as there will always be there.  Finding fulfillment in your life and living with an abundant mindset will help you discover something else.

Please take a moment to like, follow or subscribe plus also leave a review.  Your feedback is the World to us.

Sign up at BrookesLight.org for more information
Stay safe & Love and Light

Creative Commons Music by Jason Shaw on Audionautix.com

We are back behind the mic!

What was supposed to be a small break for the holidays turned into a four month break for Kyle and Mark due to Life Happening; and that's ok.  They go over what happened and why reframing & acceptance got them back in the seat again.  

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Creative Commons Music by Jason Shaw on Audionautix.com

**WATCH ON YOUTUBE**

Part 2 of 2. Let's pick up where we left off: with Bobby and his 'Outlaw Platoon' having survived being trapped under heavy enemy fire with minimal ammo and aerial support still miles away. We’ll move into the difficult battle that awaits so many veterans after they return. As if we needed any more proof that Bobby is a brave mamma jamma, he does it yet again with his open and candid discussion on #mentalhealth and #veteransuicide. Finally, Bobby talks about his young daughter's brave battle with pediatric cancer #wilmstumor, which proved that Lily has some Outlaw in her, as well. 

Important Links:
  1. Rainbow Connection
  2. GLBVC's 22-Mile Awarness Ruck March- SIGN UP!

ATITA Links

Music by HILTON, Rainbow Kitten Surprise, Aaron Gentle, Cole Swindell, Falling in Reverse, and Dresden the Flamingo. 

#044  Fed up with diets and wellness hype? Christine Okezie is on a mission to guide you to approach your food, weight and body image challenges from a genuinely "whole-istic" perspective.  She's passionate about you having the right tools to understand the deeper soul truths in your health challenges so you can feel empowered in your body and in your life.

On today’s show, I spoke with my dear friend and fellow holistic health colleague Denise Schwendeman whose journey to help her son heal through severe challenges is a living testament to the power of integrating our intellect and our intuition when it comes to advocating for our health.

Inspired to use natural modalities of healing alongside western medicine, she incorporated essential oils into his care.  A decade later, she’s become a passionate educator of natural healthcare in the US and internationally, becoming a Diamond leader distributor with dōTERRA Int'l, a  leader in the essential oil industry .   

Denise is also certified in Ageless Grace,  a cutting-edge brain fitness program based on neuroplasticity that incorporates exercises that focus on the healthy longevity of the body and mind.

Denise’s goal is to empower others to incorporate natural products into their daily lives to support the body physically, mentally and spiritually. 

Listen in on this fun and highly informative conversation where you’ll  learn some amazing tips on how essential oils can help with some of the most common ailments.  And get lots of inspirational guidance on how to honor the innate intelligence of our bodies.

To contact Denise: dschwendeman@mac.com

Recommended Resources From Denise:

1) "Symphony of the Cells"  takes a wholistic approach to wellness, and recognizes the importance of taking proper care of our bodies. It encompasses a variety of tailored essential oil applications, that target different body systems and related conditions.

2) "Buried Feelings Never Die" - By Karol Truman -  a comprehensive and enlightening resource for getting in touch with unresolved feelings which, she explains, can distort not only happiness but also health and well-being.

3) National Library of Medicine:  https://pubmed.ncbi.nlm.nih.gov

4) Environmental Working Group:  ewg.org

Top Must Have Doterra Essential Oils and Their Healing Applications:

1) Beragmot - Self Love,  Menopause
2) Frankensence - Calm, Migraines
3) Lavendar - "Your Swiss Army Knife: 
4) Digest Zen - Gut Health, Acid Reflux
5) Cheer- Adrenal Fatigue
6) Peppermint - Headaches
 

Nathan Green, also known as Nate The Great, was first diagnosed with  Acute Lymphocytic Leukemia in 2011 at age 17. He was a junior in high school and battled for two and a half years before completing chemotherapy. 

This podcast was recorded in August 2019. Nate shares about life after receiving a cancer diagnosis and the journey that doesn't end when you hear the words "cancer free." He talks about walking through the journey as a young adult, dealing with the long term effects of chemo on the body, and his dreams for the future.

>> Nate is once again in the fight. On October 20, 2020, just over a year after this podcast was recorded, Nate heard what no leukemia survivor wants to hear, “the leukemia is back."

How are you?
At least you...

Common phrases folks utter when they want to offer support but yet don't know how or are uncomfortable in the silence and want to make you feel better.  Most of the time, because they are uncomfortable.  It's understandable - how do you attempt console a parent that just said good bye to their child when you have nothing to compare it to?  It's uncomfortable for you and damn worse for them.

What a person in need of empathy needs is a human connection - They don't want someone to fix the problem - unless you can truly cure their situation - If not, then sit with them.  Be the shoulder to lean on, to listen to what they have to say.  That would mean the World to any person reeling from the grief of loss.

In this episode - Mark invites his amazing wife to the show and she share some nuggets of truly useful information that would help anyone walking through the darkness.

A great video on Empathy is by Brene Brown - Inspiring leader on the topic of Shame & Empathy.  Check out her TED Talk.
Brene Brown's TED talk on empathy

Another great site on Sympathy vs. Empathy  - Click here

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Stay safe & Love and Light

Creative Commons Music by Jason Shaw on Audionautix.com

I think we can all agree that for the first time in a very, very long time people around this planet have struggled in some manner.  Financially, physically, mentally & spiritually - Whether you lost a job, a home, your vehicle or the worst loss of all - a Loved one. 

The struggle is real and many of us deal with it the same or differently, however, we must all experience it as it helps us grow - it becomes a part of us and we all have a choice on how we handle it.

This episode is especially important as Kyle is experiencing some tough times that he helps work out right on the show.

Mark mentioned renowned public speaker Josh Shipp on the episode and here is the YT video where he explains the saying "It's actually our imperfections that make us human and our humanity that makes us influential."
https://www.youtube.com/watch?v=cBiaCai6WDg

Sign up at BrookesLight.org for more information
Rate, Review and Subscribe to this Podcast.

Stay safe & Love and Light

Creative Commons Music by Jason Shaw on Audionautix.com

Thanksgiving Episode

Do you know the difference between being Thankful and having Gratitude?

• Gratitude is an action, a choice.
• Thankfulness is a feeling.

Being Thankful is at the origin of Gratefulness as you need the feeling, the emotion to drive the action of Gratitude which is an action that you take each and every day.  You can be thankful for when someone helps you with groceries or holds open a door when you need it most.  Being Grateful is then taking that feeling and letting it drive you to appreciate others through your own actions.  Akin to 'Paying it forward', except you make it part of your being, your values that your govern your life by.

We speak about our struggles of thankfulness when we were in the middle of Brooke's treatments.  While we very thankful for the staff that helped we were very bitter over watching Brooke endure the pain.  That was until we searched and understood that through the Law of Attraction, the power of Gratitude can show us there is more to this experience.

Thank you to our radiologists Tracy and Tom - you always tried to help and accommodate us every time we came down for 47 days of Brooke's radiation.  We love you!

Credit to the passages read on the episode:
https://www.psychmc.com/articles/difference-between-gratitude-and-thankfulness

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Stay safe & Love and Light

Creative Commons Music by Jason Shaw on Audionautix.com