Category Archives: Beca’s Care Blog

Beca’s Care Family Thanks & Holiday Wishes 2017

Our Beca’s Care Families truly thank you for the support that you provide during this challenging time for their families. Below are updates on these incredible families along with their sweet gratitude:

THE DUNNING FAMILY

“My name is Ashley Dunning and I live in Granite City, Illinois. Currently I receive treatment in Houston, Texas at MD Anderson Cancer Center. I finally agreed to a clinical trial which involves an investigational chemo. We are also gearing up to do a T-cell transplant after extracting and growing billions of my own cells. So far, we’re gaining ground as my previous doctor said I wouldn’t survive to see August. I’m so thankful for Blackout Melanoma and Beca’s Care supporters because I would otherwise not be able to travel back and forth for the 30 hour round trip. This year I’ve been blessed to see my family on Thanksgiving and look forward to Christmas with them as well. Heading into the new year I’m excited about my options and what new treatments may become available to me.”

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THE BALDWIN FAMILY

We are the Baldwin Family from Joplin Missouri. Rob, Kaitlin and our 3 year old son Zachary.

Rob receives treatment at MD Anderson in Houston Texas. As of now he has active tumors in his skull bone and in both lungs. His current treatment of taking Mekinist and Tafinlar seems to be keeping things stable, but unfortunately the drugs have done a lot of damage to his heart. Robs doctors have lowered the dose of his medications and changed when they are to be taken to try and help give his heart time to rest. As of now Rob has echocardiograms to check his heart every month and scans every 6 weeks. If his heart function continues to drop, they will be taking him off his current treatment and we will begin the search to see if there are any other options available.

It’s hard to put into words how much of a blessing Blackout Melanoma has been for us. They have continued to support us emotionally and financially throughout our entire cancer journey. The group of people that make up Blackout Melanoma have became like family to us. They are truly the kindest, most caring people and they are there anytime we need them. We are so grateful for everything they continue to do for us.

This journey is not an easy one, but with God, Blackout Melanoma and our amazing families supporting us, it’s possible.

We say thank you often to the people that make up the Blackout Melanoma, but if your reading this and you’ve donated to this organization we want you to know that your changing lives. This organization has been a God send to our family and to so many other families.

From our family to yours, we wish you a Merry Christmas and a blessed new year.

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THE OWEN FAMILY

My name is Samantha Owen and I live in Wentzville Missouri with my amazing seven-year-old son Kyler. I am currently receiving treatment for Malignant Melanoma at DePaul cancer center in Lake St. Louis. My cancer treatment consists of IV infusions of chemotherapy/immunotherapy every 2 weeks, blood work and lab draws every 2 weeks, and PET scans done every 3 months. So far, the treatment is going well and PET scans are coming back good. I would just like to give a HUGE thank you to everyone with Blackout Melanoma and each and every one of our supporters. You guys have been like a second family to me and my son and have helped us beyond words and I am forever grateful!!! Thank you for everything you do and Please keep up the amazing work!!!!

Sincerely,
Samantha Owen

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Beca’s Care: The Dunning Family, Granite City, IL

Through our Beca’s Care Program, Blackout Melanoma provides emotional and financial support to individuals currently diagnosed with stage III/IV metastatic melanoma. As patients and their families go through the challenges of life onset by metastatic melanoma, it’s important that we continue to provide security and hope to them. Currently, Blackout Melanoma is sponsoring a family from Granite City, Illinois.

Meet Ashley and Xavier!

On May 26th, 2006 I was diagnosed with choroidal melanoma in my left eye. At the time I was 17 and this was a rather new diagnosis. The ophthalmologist said the tumor was too large to attempt radiation treatments and that I would have to have my eye removed. On June 22nd, 2006 my left eye was removed in an outpatient surgery. Prior to the surgery I had a chest x-ray as well as liver function tests run on my blood. The ophthalmologist was checking for metastases but found none.

I returned to normal life and finished high school. I went on to college, gave birth to a healthy baby boy in 2009, and found work after school. I took my job at Missouri Baptist Medical Center as a pharmacy technician in November 2016. Because of this change in location (I was born and raised near Bloomington, Indiana) I accepted new insurance and therefore had to change providers for my continuing care. After a brief visit with a local ophthalmologist, Dr. Kumar Rao, I was referred to Leonel Hernandez Aya for continuing care. Dr. Hernandez is an oncologist and ordered a liver ultrasound and lab work to establish a baseline for my care. I went to have these procedures done alone because I believed they were routine. On February 14th, Valentine’s Day, I was told they found four lesions on my liver.

Dr. Hernandez then ordered more CT scans as well as a biopsy. The biopsy confirmed my worst fear: stage IV metastatic liver melanoma. So here I am with a relatively new job, away from my family and with a new melanoma diagnosis. I immediately had a port placed in my chest as I was gearing up to undergo a clinical trial with a new chemotherapy drug. However, the day of my first infusion I called and cancelled. Something was wrong. I cannot explain it but I could not justify making my body horribly ill in order to make some attempt at achieving health. My oncologist, Dr. Hernandez, got upset with me and canceled all of my prescriptions, scans and labs. I begged him to help me try any treatment option besides chemo or radiation and he refused and continued to remind me I would die in 6 months if I did not receive standard treatment immediately. I did not want to be with a care team that did not believe in me or my battle.

I sought out a nurse practitioner, Pat Bauer, who is now my cheerleader. Pat offers nutritional counseling to me as well as high dose vitamin c and curcumin infusions. Pat has me following a ketogenic diet to starve the melanoma cells from their sugar-rich diet. Pat also has me flushing toxins with coffee enemas (weird, I know). Along with this I am testing my glucose to monitor my ketosis as well as monitoring my pH to achieve alkalinity. Pat truly believes we can fight this without making me ill. Naturally, my insurance will not pay a dime towards my holistic care. Though I had been working nearly 60 hours per week, my body can no longer keep up with that type of schedule. My son is caught in the middle of trying to comprehend everything at the age of 7. I reached out after speaking with Bette Cataldo, a pharmacist that I work alongside. Just last year I was celebrating being a decade melanoma free to have that dream crushed. I also foster for my local animal shelter and love all of my fur babies. Since my diagnosis I have tried tirelessly to find permanent homes for them as I am financially strained. Though times have turned gray, I still cannot put these animals back in the shelter. I am simply trying to maintain as much normality in my life as possible. My son, my foster dogs, and my job are what keep me sane.

I do not feel any symptoms currently and the melanoma is localized to the liver. I truly feel I have a chance at beating melanoma a second time. I know what the studies suggest and what the odds are but I am not ready to give up. I refuse to let my son see me struggle. He is my reason and until another scan has the chance to say any different, I AM BEATING THIS.

For more information on our Beca’s Care Program please click here.

For any other information, please contact us at info@blackoutmelanoma.org.

Beca’s Care: The Owen Family, Wentzville, Mo

Through our Beca’s Care Program, Blackout Melanoma provides emotional and financial support to individuals currently diagnosed with stage III/IV metastatic melanoma. As patients and their families go through the challenges of life onset by metastatic melanoma, it’s important that we continue to provide security and hope to them. Currently, Blackout Melanoma is sponsoring a young family from Wentzville, Missouri.

Meet Samantha and Kyler!

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My fight against cancer started with me drying off after getting out of the shower. As I was drying off with a towel, I scratched the back of my left arm, right on top of a mole that has been there for years. It began to bleed and the nurse in me doctored up the spot and placed a band aid over it. After a few days it wasn’t looking any better. When it comes to me getting a cut or scratch I tend to pay extra attention to it, because being a type 1 diabetic, it tends to take me twice as long to heal. After about a week and a half with no improvement on how the area was looking, I decided to go to the dermatologist, which I see on a regular basis. I made an appointment with Dr. joseph DuVall, and he biopsied the area right away. The dermatologist who I had been seeing for years prior had refused to remove the mole. In the years before, I asked her to remove it as I did not like the way it looked and where it was located. The response I got from her was “It appears to be ok and doesn’t look worrisome, so we can just keep an eye on it.” Thank goodness she did not accept my insurance anymore and I was able to see a new dermatologist, who was actually interested and took action on my concerns. After the biopsy was taken I was called on February 13th, 2014 that I had Melanoma and I needed to go see a surgeon. They recommended Dr. Neff. Nonetheless, I drove straight there. Dr. DuVall said he was expecting me and was aware of my situation.

After visiting with Dr. Neff, I was informed that I had at least stage 3 Melanoma and scheduled the surgery to have it removed, as well as, a sentinel node biopsy to see if the Melanoma had spread. My surgery was scheduled for February 22nd. During the surgery they removed 2 lymph nodes and a large portion of the back of my left arm. They informed me that they had to take more tissue than expected because my margins were not clear and ultimately it measured 2.8 cm. That following Wednesday I received another call from Dr. Neff’s office stating that my sentinel node biopsy came back positive and there was cancer located in the 2 lymph nodes they removed.         They rushed me in for a PET scan that Thursday, and scheduled me for my second surgery March 1st to remove the remaining lymph nodes left under my left arm. The week following surgery, they called again with the results of the other 23 lymph nodes which all came back negative. So the melanoma only metastasized to the first 2 lymph nodes that they removed, which was the first piece good news I’ve gotten since the beginning of this journey.

After the surgeries were complete, I started my one year treatment of interferon, 30 days of high dose infusions and then after the infusions were over, I did a shot every other day for a year. That was the longest year of my life. I was counting down the days until I was done giving myself shots and making myself sick feeling like I had a bad case of the flu x10. It was absolutely miserable but I pushed myself everyday because I had my son that I had to be there for. After many hospitalizations from being neutropenic and sick, Losing my hair, extreme body aches and pains, I finally was done with treatment on April 28th, 2015. I was told the cancer was gone and I would now only see the doctor every 3 months for annual checkups.

In June, I was admitted to the hospital for C-Diff. I ended up with c-diff because I was in the hospital in May, over Mothers Day with sepsis and they loaded me up with a bunch of antibiotics. I received a CT scan during my admission in June, which was unremarkable and perfect. I was finally healthy again and normal. I felt great and was excited to get back to my old routine and do the things I use to do before I got sick and that is what I did.

I had a check up with my oncologist and blood work done in August and everything came back ok. Dr. Bandi, who was my oncologist at the time said everything was looking good and even asked if I would be willing to talk to some of his other patients who were recently put on interferon and tell them my experience. I was more than willing to help and I told him I would. My next Follow up with Dr. Bandi was in December and once again my blood work was great, and physically I felt fantastic. I asked him about routine scans and should they be done and he said that they could schedule me for a routine CT scan. I had the CT scan done on December 18, 2015 and on Monday, December 21st I was told that I had a 5.2 cm lesion on my liver and nodules on both of my lungs. My heart sank and I busted into tears. I could not believe what I was hearing. I had to go through this all over, for the second time. I was speechless and numb.

I began to see Dr. Beattie, who immediately got me in for an MRI of my brain on Wednesday, which was negative, and a liver biopsy on Christmas Eve. A week later, my nightmare became reality. The melanoma was back and it metastasized to my liver and lungs. I waited until after the holidays to tell my family because I didn’t want to ruin the holidays. I got in more trouble for not telling them when I first found out.

Dr. Beattie did not hesitate starting me on treatment. He started me on a chemotherapy consisting of Nivolumab and Ipilimumab, which are infusions that will hopefully target the melanoma. Dr. Beattie did test me for the BRAF mutation which did come back negative, so with that being said, Being BRAF negative leaves me with less treatment options. As for treatment, My first infusion was on January 12th and I will continue with these infusions every 3 weeks for 4 cycles. Then I will continue to only take the Nivolumab by infusion every 2 weeks indefinitely, until there is remission, my body cannot take the side effects any more, or the drug quits working.

I do not have a choice but to fight. I am a 29 year old single mother of a beautiful 5 year old boy who is my world and my number one reason to keep my head high and to keep pushing and to NEVER give up. He IS my inspiration and he gives me my strength. It is unfortunate that this happens to anyone and honestly unfair because no one deserves to go through this, but I will go through it because of him and I refuse to give up. I have been through a lot in the past 2 years, I was diagnosed with cancer , I lost my best friend and cousin, I lost my grandpa and my childhood best four-legged friend on the same day, and was diagnosed with cancer…again, all on top of me being a type 1 diabetic since the age of 5 years old. Yes, it is a lot and sometimes I ask myself why but I know that I will never be able to get the answer to that question, but what I do know is, that I am going to keep fighting and not give up.

 

For more information on our Beca’s Care Program please click here.

For any other information, please contact us at info@blackoutmelanoma.org.

Beca’s Care: The Alsop Family, St. Louis, Mo

Through our Beca’s Care Program, Blackout Melanoma provides emotional and financial support to individuals currently diagnosed with stage III/IV metastatic melanoma. As patients and their families go through the challenges of life onset by metastatic melanoma, it’s important that we continue to provide security and hope to them.

The Alsop Family

We began supporting the Alsop family in 2015.  Lisa Alsop had stage IV metastatic melanoma. She was active in Blackout Melanoma events and was a shining light and constant reminder of why we do what we do.

Lisa lost her battle to melanoma January 18th, 2016.

Felicia “Lisa” E Alsop

September 30, 1970 – January 18, 2016

Loving wife of Daniel; cherished mother of Jacob and Brody; loving daughter of Joan (Tim) Diffley and the late Marvin Levy; dear step-sister of Molly Xenakis, Maggie Brown and Michael Diffley; dear sister-in-law of Joan Alsop, Paula Alsop and Patricia Hernandez; dear aunt, niece, cousin and friend to many.

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The Alsop Family at Blackout Melanoma’s A Day the Ballpark event in June, 2015.

“Blackout Melanoma has been here to support me financially and physically along with my parents. I don’t know what I would do without such great people holding my hand and being positive when I can’t for myself!! It means the WORLD to me!!! They are not just a regular group. They are my FAMILY!!!”

May you rest in peace, Lisa.  We love you and we miss you.

 

 

 

 

For more information on our Beca’s Care Program please click here.

For any other information, please contact us at info@blackoutmelanoma.org.

Beca’s Care: The Baldwin Family, Joplin, Mo

Through our Beca’s Care Program, Blackout Melanoma provides emotional and financial support to individuals currently diagnosed with stage III/IV metastatic melanoma. As patients and their families go through the challenges of life onset by metastatic melanoma, it’s important that we continue to provide security and hope to them. Currently, Blackout Melanoma is sponsoring a young family from Joplin, Missouri.

Meet Rob, Kaitlin, and baby Zachary!

During the first week of February, Rob Baldwin (32), noticed a small lump under his armpit. At first, he thought he had pulled a muscle because of the soreness. A week later, his wife Kaitlin gave birth to their first child Zachary. The next couple of weeks were hectic; between Zack having to go back to the hospital for jaundice, and getting the house ready for their new baby. Rob’s lump slowly progressed to the point of needing to get it checked out. The initial exam showed the lump was likely just an infection. After further tests and a biopsy of the site, it was determined that surgery was needed to remove the mass. Rob had surgery on March 31st, 2014, to remove the 9cm mass. The surgery revealed that the mass, and some surrounding lymph nodes, contained melanoma.

Rob, Kaitlin, their family and friends were shocked when they got the news that Rob had melanoma. They immediately started searching for hospitals that specialized in melanoma treatment; everyone kept recommending MD Anderson in Houston, Texas. Rob and Kaitlin packed their bags with their 7 week old baby Zachary, and headed south on April 6th, 2014. A few weeks later, Rob had his second surgery. This surgery was to remove all lymph nodes on his right side. Including the one located under his pectoral muscle that lit up on his PET scan originally. On May 19th, Rob had his post-op appointment with his surgical oncologist Doctor Gershenwald. The surgery went well. However Doctor Gershenwald found more spots of melanoma than they expected. Rob and Kaitlin then met with Rob’s medical oncologist Doctor Amaria. Doctor Amaria told Rob that his current diagnoses is stage 3C melanoma. She went over statistics with Rob and Kaitlin; they sat in the doctor’s office understanding that the rates of survival for Stage 3C melanoma patients were not the best. Rather than focus on the unfavorable numbers, Rob & Kaitlin focused on their future, their child, and their faith.

Right after the Thanksgiving holiday, Rob had scans and tests ran. At this time, they found the cancer had spread to his brain, meaning he would need to undergo full brain radiation. The full brain radiation would consist of 10 treatments over a two week period. As of December 17th, Kaitlin reported that Rob was 60% done with this treatment. Aside from being tired and dealing with headaches, she said he is doing amazingly well and is in great spirits! Kaitlin and Rob just celebrated their 2nd wedding anniversary, and are looking forward to celebrating the holiday with family and friends!

For more information on our Beca’s Care Program please click here.

For any other information, please contact us at info@blackoutmelanoma.org.