Journal entry by Laura Benson — Oct 14, 2017
Colin had an infusion called "Reclast" on Wednesday October 10, 2017. The infusion was given to help offset the long term side effects of the high dosage of steroids that he has been taking.
Later that evening, Colin became violently ill. Unfortunately he was alone in his room on base. He was able to phone me (Laura) in the early morning. And thankfully I was able to catch a same day flight to DC and get myself up to the base.
He was suffering from a severe reaction to the infusion due to his weakened immune system. In addition, I noticed his skin was pink and scaling, which signaled a possible relapse.
The base ambulance transported him to the ER and he was later admitted to the hospital.
***** catching everyone up on the past six months: While impatient at Washington Hospital Center's Burn Unit Colin was given three days of infusions called IVIG which produced no tangible results. In addition, Colin was showing signs of another relapse. So the doctors immediately began high dosages of cyclosporine. Meanwhile Colin lost all of the skin on the legs from his thighs to his toes and also his arms down to his fingers. Sadly, while this was all happening right in front of the doctors and still adhering to the diagnosis of DRESS, while referring to this as a "Diagnosis of exclusion". Additional diagnosis were mentioned: Steven Johnson's Syndrome and Toxic Epidermal Necrolysis
Colin was also visited by the Hematology Oncology doctors who startled us with terrifying news of a possibly finding in the skin scraping and blood labs - t-Cell lymphoma.
During this time the military's Navy Wounded Warrior Safe Harbor Program approached us about assistance.
The Hospital then discharged Colin and he was now outpatient; however living in base in the Wounded Warrior Barracks with me as his NMA (non medical attendant).
Every day I wheeled Colin to and from various medicinal departments to follow up with his condition and I cared for his wounds in his room.
He gained the ability to walk again in later July.
He was showing signs of improvement, so they resumed his steroid taper.
The steriods and cyclosporine helps to hold his rash at bay, but the high doses from each medicine required is dangerous for his health. He has seen many additional doctors that treat the side effects of long term steroid use.
many times they have had to adjust the dosage due to skin breakouts and painful eruptions.
Colin is chronically fatigued and is always scratching, shedding skin and complaining of the chronic pain he feels in his body, especially in his skin.
