DIPG Spotlight:

Morgan Savage

This issue's Smiles For the Season Spotlight is on six-year-old, Morgan Taylor Savage, daughter of Courtney and Robert, and big sister of three-year-old, brother Harrison. Diagnosed with DIPG (diffuse intrinsic pontine glioma) on September 29, 2014, Morgan is now at home in Rock Hill, South Carolina, and just recently, (March 25) began the second round of her at-home chemo regimen.

Her very early symptoms, attributed to "wanting more attention than her brother" and "anxiety of being a first grader" included mild aggression, especially toward Harrison, and a heightened emotional state, neither of which raised a "red flag" for Robert and Courtney. However, when physical symptoms of a "catch" in her right leg and a lack of animation on the right side of her face, accompanied the emotional outbursts, and noticed by Robert's parents after a weekend in Atlanta, the Savages visited Courtney's pediatrician. After a phone consult with a neurologist, Morgan was sent to Levine's Children's Hospital in Charlotte, NC, for further tests and evaluation. It was after the stressful week at Levine, with the confirmed diagnosis of DIPG, that Morgan, in her strong Savage personality declared, "I just gotta roll with it."

Just two weeks following the official diagnosis, Morgan was now at St. Jude in Memphis, TN, with an access port, 4 MRI's under her belt, on a chemo protocol, on steroids, and getting ready for seven weeks of radiation.  Although most children on radiation are sedated, Morgan had endured a practice round, without sedation; therefore her daily treatments without sedation would not require the 8-hour pre-radiation fast, a real blessing to any patient on steroids whose hunger is insatiable.

While in Memphis, the Savages, who at first stayed at the Tri Delta facility, were now bunking at the Ronald McDonald House, with added amenities as well as the camaraderie of families facing similar medical issues. Robert and Harrison returned home until Halloween, while Courtney held down the fort, with visits from relatives and friends. With six more weeks in Memphis, the Savage family was overwhelmed by the outpouring of love, support, visitors, cards, and packages from family, friends, and strangers. Daytime hours were spent with appointments, OT and PT therapy, lab work, and satisfying Morgan's hunger at area eateries.

Although fitted with a foot and knee brace, Morgan's deteriorating speech and mobility were cause for concern.  A CT scan in early November was ordered to rule out several possibilities.  In addition, Morgan was experiencing a sense of imbalance, and her fear of falling off the table during radiation, resulted in sedation for the remaining radiation treatments. However, despite her agitated mood swings, her real, loving personality was able to peek its head several times. So heartwarming was her concern over finding a DVD that Harrison would enjoy, watching Harrison open a package addressed to him, despite being surrounded by several packages for her, and simply "crying" because she was so happy by Dad's profession of his love for her.   

Before Thanksgiving, the Savages were on their way home to South Carolina, finished with the radiation at St. Jude, and eager to be home, among family, friends, and familiarity. The biggest and best surprise for Morgan was her new bedroom (Daddy's old office, on the main floor) completely re-done in a girly pink decor by the generous efforts of so many friends. The new and improved room, complete with a decorated, Christmas tree, made Morgan exclaim, "I never want to go back to my old room."

Back home, with Christmas drawing near, Courtney and Robert returning to work, and Maw Maw (Courtney's retired Mom) manning the household and caring for Morgan, the Savages attempted to be a normal family, putting up the family Christmas tree, battling winter colds, and enjoying the company of friends and neighbors. Seeing "Frozen on Ice" in Greensboro was a real treat for Morgan, and gave a semblance to family outings of days gone by.

Meeting with Make-A-Wish representatives for Morgan's post-Christmas trip to the Disney resort in Hawaii added much excitement to the holidays. But, besides plans for Hawaii, one of the greatest surprises for Morgan and her family was the visit from the Pleasant Plains Baptist Church --- a 21-person bus load of mostly kids --- who came to sing Christmas carols and shower Morgan with a huge basket of gifts.

The post-Christmas MRI at St. Jude put a damper on the spirit of the season, as the right side of the tumor decrease was diminished by the left side increase.  Another PET scan could provide additional info, but scheduling the scan was hindered by the holiday weekend. After discussing the plans for the Make-A-Wish trip, Dr. He felt that Morgan should get an increased dose of steroids (12mg. a day, her greatest to date).  The docs gave the go-ahead, with the stipulation that the new chemo regime begin by January 13, 2015.

The trip to Hawaii found Morgan exhausted at times, unable to fully enjoy all the sights and sounds, but yet she was still a beautiful Hawaiian princess.

Back home, the pace picked up for the Savage household.  The new chemo drug,  getting PT/OT at home, getting Morgan fitted for a wheelchair, plus meeting with Hospice, amid Morgan's declining abilities, was over-shadowed by the fact that Morgan was not in any pain.

The last couple weeks of January and the beginning of February brought some improvement to Morgan's condition. With reduction in her steroids, Morgan was smiling, laughing, and interacting with her family. Proof of the positive was the weekend spent shopping for the "hot-pink" dress for the Daddy-Daughter dance, the visit to Build-A-Bear, and a living room camp out with movies, popcorn, and Morgan cheering, "Yeah, Yeah!" On Sunday, the family attended The Children's Theater in Charlotte, using the season tickets purchased well before last September.

Celebrating Harrison's third birthday in great style, thanks to the Grants, was a win-win for all, as Morgan loved the party, the food, and the presents for Harrison. Morgan's happy mood brought happiness to all.

After four weeks of the new chemo, another MRI at St. Jude was in order. Unfortunately, the results were not good, and Morgan was removed from the clinical trial at St. Jude. A low-risk, stabilizing chemo will be administered at Levine; there will be no need to return to St. Jude.

March had come in like a lamb for Morgan. She is tolerating her new chemo, her blood work is good, and although not better with her standing and walking, she seemed to be more observant, happier, and laughing.

Maw Maw continues to man the store, and the Grant-organized meals are still coming. Teachers from her school visit often, providing such great enrichment to Morgan's day. Yes, those underpaid teachers invade the Savage household, four times a week. What's more, Senora Notaro and Mrs. Smith, two of those lovely ladies, organized a charity poker benefit that raised so much money for Morgan's needs. To support Morgan, visit her GoFundMe site.

With Courtney's last caring bridge journal entry of March 22, "things seem pretty stable." To follow Morgan's entire story, and to feel the heartfelt words of both Courtney and Richard, visit her Caring Bridge Site.

As a SFSF grant recipient in January, SFSF wishes Morgan the best, and hopes March goes out like a lamb for Morgan, the way it came in.   

SFSF reaps rewards from AmazonSmile and iGive

SFSF supporters who used Amazon Smile and iGive added $64.59 and $47.08, respectively, to the SFSF coffers, by using the sites during the last quarter of 2014. Shoppers simply need to order through AmazonSmile or use iGive online stores, name SFSF as their charity of choice, and percentages of their purchases will be given to SFSF, on a quarterly basis.

SFSF thanks those who use the two services, and reminds all who have not registered to visit AmazonSmile and iGive to begin a very simple, cost-free method of supporting SFSF.

Think AmazonSmile and iGive for Easter outfits, spring break travel, garden supplies, summer specialty items, etc....the possibilities are endless.

SFSF grants surpass $565,000

Since December, 2014, the Foundation has helped 17 families and awarded $18,000 in grant money, bringing the total amount of family grants awarded to $414,253. The grand total donated by SFSF, including donations to The Cure Starts Now ($82,000) and St. Jude ($70,000), is $566,253.

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. The children of the families who received grants in January and February 2015 (there were no grant recipients in December 2014):

• Nathan, age 8 - passed away February 2015 from DIPG
• Anonymous, age 2 - DIPG
• Morgan, age 6 - DIPG
• Anonymous, age 14 - astrocytoma
• Leslie, age 14 - passed away November 2014 from a glioblastoma
• Anonymous, age 13 - medulloblastoma
• Gabriella, age 2 - polycystic astrocytoma
• Tommy, age 15 - germinoma
• Anonymous, age 11 - medulloblastoma
• Kyleigh, age 14 - glioblastoma
• T'aun, age 4 - pineoblastoma
• Nathan, age 7 - ganglioglioma
• Anonymous, age 5 - medulloblastoma
• Alexius, age 16 - brainstem glioma
• Richard, age 14 - glioblastoma
• Wesley, age 7 - medulloblastoma
• Joseph, age 12 - glioblastoma