Every four months The Boy goes to the outpatient infusion center at the local children's hospital for his Pamidronate infusion. For those of you who are new to this blog, Pamidronate is a bisphosphonate drug given intravenously for the treatment of Osteogenesis Imperfecta. It is the same family of drug that menopausal woman take to increase bone density for the prevention and/or treatment of osteoporosis.
The Boy has Osteogenesis Imperfecta or "brittle bone" disease. OI is not really a "bone disease" but rather a type 1 collagen mutation in the majority of cases that causes disruption of collagen production in bones and other tissues. Depending on the type of OI an individual has they may have numerous other symptoms ranging from short stature to deafness to basilar invagination.
The Boy biopsies out as type 3 which is one of the more severe forms of OI. When he was born the fracture estimate for type 3 OI was about 50 per year. Pamidronate reduced those fracture estimates to less than 2 to 4 per year. First begun about 13 years ago at Montreal Shriners, these infusions have the added benefit of also reducing the excruciating bone pain that individuals with OI suffer from on a daily basis and not just when fractured.
The Boy was one of the first children in the United States with OI to receive Pamidronate. He began by being infused every other month for 3 days in a row. These infusions lasted approximately 8 hours per day due to his small size and inability to handle too much IV fluid at once. We followed this schedule for YEARS.
Twelve years later we are still going for infusions but we now go every 4 months for 2 days and the infusions last approximately 5 hours per day.
While grateful for treatment it is frequently a challenge working the infusions in between my job and school aged children's varying classroom and bus schedules. Numerous times over the years I have had to bring the entire family to the hospital because I have not been able to find a sitter while The Boy receives his Pamidronate.
It's been a long 12 years.
This week the monotony of sitting still was broken by Flashes of Hope.
Flashes of Hope is a nonprofit organization that changes the way children with cancer and other life threatening illness see themselves through photography while raising money for pediatric cancer research. Each child is treated to a makeover including hair and makeup and every parent is given gorgeous black and white photographs of their child free of charge.
Today Aveda Institute provided the makeovers.
Unfortunately, when I went out to the lobby to see if they were set up yet I was informed that the photographer was ill. I had to laugh. No surprise there. Simply the way the entire week seemed to be going for this family!
I was stopped by a nice gentleman from Aveda Institute , however, who informed me that they were still hanging around even if photographs were not being taken to do hair, make up and hand massages.
The boy was reluctant stating, " I am not wearing makeup!'
I assured him he did not have to wear makeup but it might be kind of nice to get a hand massage and a hair style. I may have also casually mentioned how pretty the cosmetologists were.
The Boy checked his hair frequently through out the day and asked later if I would buy him some hair gel. He made me smile.
I am grateful for organizations such as Aveda Institute who give back to their local community and who go out of their way to provide happiness to those whose lives really benefit from a self-confidence booster shot.
Job well done, Aveda. This mom thanks you!