Patient Of The Month (#POTM)

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February’s Patient Of The Month

The #POTM for February is Parker and below is her story…

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At the age of 8 this precious little girl, Parker Monhollon, was diagnosed with DIPG, an inoperable and deadly form of children’s brain cancer. Friends and family in Kansas and beyond are doing whatever it takes to spread the word. Despite the 500 mile gap, Kristen Bodiford who is a singer songwriter in North Texas, felt led to write and record a song for Parker, “Dance right through the storm”. The song paints a vivid picture of the real moments a family is faced with when battling a rare and incurable disease. The song should be released on itunes at the end of the month and a portion of the proceeds will directly benefit Head for the Cure. Kristen has taken on a new initiative and is hoping to raise money to help produce a music video for Parker as a way to provide hope and encouragement to fight DIPG and to build awareness!  

CLICK HERE TO SUPPORT KRISTEN’S EFFORTS: Kristen’s Fundraising Page For Parker 

January’s Patient Of The Month

Our January #POTM is Kevron and below is his story…

Kevron Brain Cancer

Kevron was diagnosed 11/7/2015 with a tumor of the brain stem; called Diffuse Pontine Glioma. The severity of his case is that this is the area of the brain stem that controls his breathing, heart rate, swallowing, and other sensory areas, which makes the tumor non-operable. Our doctors have been very candid and have recommended radiation for a period of 6 weeks, which will allow our family to spend very valuable and limited time together. Kevron symptoms will become very severe and may limit the amount of activities that can be achieved. He is an extremely happy little boy, who loves sporting events, playing outside, and spending time with his older brother Khamari.

His family hopes to raise money to assist with additional medical expenses, such as, wheelchair, house modifications, copays, and travel expenses needed for radiation and doctor visits.

CLICK HERE TO DONATE: Kevron’s Fundraising Page

 

November’s Patient Of The Month

Our November #POTM is Grace and below is her story…

GracePOTM

At 6 month old, our daughter Grace, was diagnosed with Atypical Teratoid/Rhabdiod Tumor (ATRT). An extremely rare, very difficult to treat pediatric brain tumor. The tumor has been fully resected and there are no other tumors present in her brain or on her spine. Her spinal fluid is negative for cancer cells. We are very hopefully of a positive outcome. Grace has already completed 4 rounds of chemotherapy, 1 stem cell harvest, and 2 stem cell rescues. She still has 1 more round of chemotherapy and stem cell rescue and we plan to start Proton-Beam Therapy in January. Grace has endured a few setbacks, like a subdural hematoma, shunt revision, and a PICC reinsertion. She is a fighter! Grace has a long road ahead, but we have faith in God that she will survive and thrive.

CLICK HERE TO DONATE: GRACE’S FUNDRAISING PAGE

October’s Patient Of The Month – Breast Cancer Awareness Month

In honor of Breast Cancer Awareness month DLN Shades will feature The DeAngelo Williams Foundation as their #POTM. DeAngelo Williams was recently told by the NFL that he will not be allowed to wear pink for the full season. He wanted to wear pink beyond the month of October to support his mother who had passed away from breast cancer. Since the NFL won’t support DeAngelo, DLN Shades will!

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The mission of The DeAngelo Williams Foundation is to develop and seek initiatives to support the eradication of breast cancer through preventative care and research. Also through philanthropy and community service, the foundation strives to become an advocate of education with a special focus on children’s literacy.

CLICK HERE TO DONATE: The DeAngelo Williams Foundation

FULL ARTICLE ON DEANGELO NOT BEING ALLOWED TO WEAR PINK: DeAngelo Williams Article

 

September’s Patient Of The Month – Macey

Our September #POTM is Macey and below is her story…

Macey

In the winter of 2013 Macey’s grandma, sometimes accused of being a bit of a “worry wart”, noticed her squinting. There had been a few other odd things about Macey’s health over the last year: her two-years younger little sister had caught up with her in height, while her older sister surpassed her by 10″. And she was constantly thirsty. The doctor had assured them that each child develops differently but her eyes were too much to ignore.

They first saw a general ophthalmologist who then referred them on to a specialist at the Casey Eye Institute in nearby Portland, Oregon. There it was determined Macey had RAPD, an optic nerve condition, and an MRI was ordered. On February 18th after the MRI, they got a call that no parent ever wants to receive: the MRI had found a massive tumor, the size of two golf balls, situated atop the pituitary gland. This explained the squinting, which was actually causing blindness, now permanent in one eye, and also the lack of growth and constant thirst.

Macey was admitted to Doernbecher Children’s Hospital the very same night. 36 hours later she underwent a nine-hour brain surgery and her amazing surgeon Dr. Baird and her team were able to remove the tumor successfully! Due to the size of the tumor they were unable to save her pituitary gland. Without the hormones produced by the pituitary, she now faced a life full of complications: her body had no adrenal function, which is life threatening, no thyroid function and a specialized type of diabetes. Without regulation of hormones she wouldn’t be able to grow, let alone go through puberty, without the assistance of medications. Her life, and her family’s, changed rapidly to accommodate a regimen of daily medications and the recovery from brain surgery, which can last for years. But they thought that the “hard” part was over.

On August 5, 2015 at one of her routine MRIs, her parents heard the word “tumor” for the second time– but this time there were two, growing in the same spot as the original. Her parents hearts, barely mended, broke again. Her doctors immediately began putting together a new treatment plan which would include a wait and watch, then a new round of surgery. But this time they knew that the tumors could continue to come back after surgery.

But then a ray of hope came. Through a group on Facebook of fellow craniopharyngioma survivors they were told about a study at St. Judes on her tumor that included an experimental form of targeted radiation known as proton therapy. Only about a 100 kids a year are diagnosed with her tumor, making it difficult to treat with success. Her mom, Courtney, emailed the doctor and received a reply in fifteen minutes! The news was what they had hoped: he told her that the research at St. Jude’s has so far been very successful and gives the best chance to stop the current growths as well as a future reoccurrence. Now the wait began to hear if Macey would be accepted to the study! Her family weighed the options and decided that Macey, if accepted, and her mom would go to Memphis, Tennessee and Jacksonville, Florida for the two to three months that it will take for her to go through the program. Five days a week, for 6 weeks, Macey will wear a custom mask that will secure her head to a table to receive radiation targeted to the exact location of her tumor. That part doesn’t sound that great for a seven-year old, but it’s her best hope! On Monday August 18th, they received the good news, Macey has been accepted to the study! They are anticipaing to leave the end of September, although that is not confirmed yet! 

As you can imagine this is not easy on a family from an emotional let alone financial standpoint. Courtney is a photographer and fall is her busiest time of year. And her dad, Jason, will be home working and holding down the fort with their other three children.

Any support you can give to Macey’s family to lighten their load, help to cover travel not covered by the study, and even help Macey to be able to have some “normal kid time” while in treatment would be greatly appreciated. This little girl and her family have been through so much already as she faces a challenge everyday with the side effects of the effects of the loss of her pituitary gland, let alone a reoccurrence of the tumors. She is brave and has such a tender heart. Please help us make their burdens a little bit lighter! 

CLICK HERE TO DONATE: MACEY’S FUNDRAISING PAGE

DLN Launches #POTM

DLN Shades has been in business for almost one year now. Our drive to make a social impact has been good but we know we can do more. We are excited to launch our Patient Of The Month (#POTM). DLNshades.com will feature one young brain cancer patient in need of support and donations. Our readers will be able to donate directly to the #POTM through DLN Shades or on the patient’s fundraising page.

Our August #POTM is Jonathan and below is his story…

Patient Of The Month - August

Patient Of The Month – August

At 3yrs old Jonathan was diagnosed with brain cancer.  Countless doctor visits and tests had missed the disease until the day came when he could not walk or stay awake.  It was less than an hour into the ER visit when the earth shattering news was given… sweet, energetic and full of life Jonathan, had a fast growing Ependymoma grade III tumor wrapped around his brain stem.  Doctors gave very little hope due to the size and location of the tumor, but Jonathan fought through surgery and miraculously overcame with minimal deficits.  Cancer treatment began immediately.  Family relocated to Houston, Texas for 2 months where he received 29 rounds of Proton Radiation at MD Anderson Cancer Hospital.

Jonathan has been working hard with therapies to get him back on his feet and closer to his age milestones.  Even with his ongoing vision problems, he has not let anything slow him down.  Jonathan loves to sing, dance and is a superhero fanatic!  He is a sweet, gentle boy, but can beat his 11yr old brother in wrestling any day.

However, after months of watching suspicious spots on his routine scans, in June 2015, it was confirmed that Jonathan’s brain cancer is back and growing at an alarming rate.  Doctors are not very optimistic since surgery and treatment did not keep this cancer away.  Once again family has relocated to Houston, Texas to provide Jonathan with different treatment options at MD Anderson.  The delicate surgery is set for tomorrow to remove as much as possible of the tumor.  Again, family is hoping for a successful surgery with minimal deficits to Jonathan’s body.

Your donation will go to help ensure Jonathan gets the best medical care possible and ensure that his parents, Ben and Delia, have the resources needed as they relocate to wherever is necessary for ongoing treatment options.   As of now, Jonathan is set to begin a very new clinical trial immediately after he recovers from surgery.  This will require the family to stay away from home an additional 3 months.  Please know any funds that are raised and unused will be passed forward to other families facing the same challenges and for research to find the much needed cure for Ependymoma Brain Cancer.

CLICK HERE TO DONATE: JONATHAN’S FUNDRAISING PAGE