No More masks — On Nov. 19, just one day shy of the two-year anniversary of the day that changed Shelby Huff’s life, her blood counts were normalizing and she was able to throw away the mask she had to wear to protect her against communicable diseases whenever she was in public. Her doctors think she should be done with masks for good. [Submitted Photo]
By Kacie Svoboda
As Thanksgiving approaches, most families pause and reflect on what they have to be grateful for in their lives. For one Hill City family, this year is especially meaningful, as their gratitude list has recently grown to be extremely long.
After two years and several complications, the now 18-year-old Shelby Huff is beginning the process of returning to Hill City. In fact, her grandparents and long-time Hill City residents Sam and Linda Brown are currently heading to Florida to join her for the holidays and aid in her final recovery. They hope to return to Hill City with Shelby by Jan. 1, 2015.
On Nov. 20, 2012, Shelby was diagnosed with severe aplastic anemia — a rare condition in which her immune system attacked the blood-forming stem cells in her bone marrow. The immediate treatment for severe aplastic anemia was immune suppressants to stop the attack on her marrow. This treatment left Shelby’s immune system vulnerable, so she had to wear gloves and a hospital mask to protect herself from communicable diseases whenever she was in public.
Shelby then received a bone marrow transplant and had to go on more immune suppressants to keep her body from rejecting the new marrow. Though the transplant was successful, the treatment left her with a highly compromised im-mune system and susceptible to other diseases.
Due to her weakened defenses, Shelby contracted the Epstein-Barr virus, an extremely common virus —with 90-95 percent of adults displaying evidence of having had the infection at some time in their lives. However, with no true immune system to defend against it, the virus metastasized into lymphoma. She then developed VonWillebrand disease, which arises when there is a deficiency of the protein required for platelet adhesion and results in the blood not coagulating. In Shelby’s case, it led to uncontrollable bleeding.
“She just kept bleeding,” said Sam Brown. “That’s when she came pretty close to dying.”
Shelby’s health finally took a turn for the better when she was started a clinical trial T-cell therapy in which she was given T-cells from people who had been exposed to the Epstein-Barr virus and beaten it. After this treatment, the Von Willebrand disease and the virus began to subside and the cancer along with it. Shelby is now waiting for her T-cell production to increase before she can return to Hill City and a normal teenage life.
Shelby’s T-cell count was as low as 85 and the goal is for her to have a count of 200 for her to be released. On Nov 19, Shelby’s blood counts were at a two-year high and she was able to throw away her hospital mask for good.
Now Shelby is near the top of the long climb back to being a healthy teenage girl. The Browns are reflecting on the many people, organizations and circumstances they have to be thankful for in this two-year battle.
The Browns are grateful for the overwhelming support of Hill City High School and the community in raising money for a VGo wireless robot so Shelby was able to continue her schooling during this journey. This allowed Shelby to virtually attend classes and interact with her fellow classmates in Hill City while she was receiving treatment hundreds of miles away.
“Shelby is a very social person,” said Sam. “It was a great help for her to be able to get that socialization and stay connected to her school.”
The school and community were able to raise over $7,000 for the VGo in only a couple of weeks.
“We went in with the information and suggested it to Principal Satter and next day the school had a hot dog eating contest as the first fundraiser,” said Sam. “About two weeks later they had raised all of the money.”
When fighting an extended illness, expenses can build up quickly. Sam expressed gratitude to the vital service offered by Ronald McDonald House, which provides a place for family members to stay during a patient’s long-term treatment. The Browns and Shelby’s mother used this service several times as they followed her to treatments in Sioux Falls, Minnesota and New York.
The Corporate Angel Network provided another impportant service. This organization offers free flights to cancer patients both to and from their treatments. This allowed Shelby to stay with her mom in Florida inbetween her treatments in New York and kept her safe from the many communicable diseases present in commercial flights and airports.
South Dakota Medicaid was also essential to Shelby’s recovery, as it covered all of her medical expenses due to a happy fluke. Shortly before Shelby was diagnosed she wanted to play soccer. Afraid of an injury, her grandfather set her up with Medicaid.
“I told her, ‘If you broke your leg, I wouldn’t be able to pay $10,000 to fix it,” Sam recounted.
The Browns are also extremely grateful that Shelby was accepted into the clinical trial that was ultimately the reason for her successful recovery.
Many people contributed to boosting Shelby’s spirits and helping her stay strong in her health crisis. Included in that list is country music/pop star Taylor Swift, who visited Shelby in the Memorial Sloan Kettering Cancer Center in New York City, N.Y.
The Browns are especially thankful for the countless prayers offered by friends, family, their church and even complete strangers for Shelby’s recovery.
On Thanksgiving day, the turkey and stuffing may grow cold as the Browns, Shelby and her mother count these many blessings they have amassed over the last, long two years. This year ,Thanksgiving holds a deeper meaning for this family and for all who have wished for Shelby’s recovery.
To see more updates on Shelby’s progress, visit her Facebook page at Shelby’s Journey with Very Severe Aplastic Anemia.
