The Internet is such a powerful tool. Over the years, I’ve discovered many things that have made me laugh, think, and cry. I’ve read inspiring stories, articles and posts that have challenged me in many ways, and I’ve also read about medical conditions that I never knew existed. Most of all, the Internet has helped me to care, about causes and people I have never met.
Today I’m bringing you the story of a family I do in fact know, a young mother and father, Sarah and Matthew, friends of mine from high school. Please take a few minutes and read Sarah’s words about their youngest daughter, Mary Caroline.
I was scheduled for induction with my third child on Friday, May 4th, 2012. Being my third, I felt more prepared than I had with the first two. I had spent the previous nine months getting everything ready. I had enough cloths, diapers, and wipes to last months. I had all the necessities like diaper rash cream, baby wash, lotion, etc. to last her whole infancy. Our bags were packed and the car seat was ready; all that was missing was our baby! However, just moments after giving birth we realized that something was wrong, and no amount of preparation had me ready for what was to come.
Mary Caroline was born with a rash all over her body. She was covered in spots head to toe. The doctor and nurses seemed to panic, which quickly sent me into a panic! A few hours and two pediatricians later, she was moved to a children’s hospital a little over an hour away. I checked myself out and went with her of course. As soon as she arrived there, the pediatrician told us the possibilities of what the rash could be. They said it could be nothing or it could be something viral. They really didn’t know what it was; other than the rash, she was seemingly healthy. A dermatologist was called to do a biopsy.
My husband and I spent the next three days there with her in the NICU. Every time the phone rang, or a doctor or nurse so much as looked our way, we would ask if the biopsy results were in. By Monday, Mary Caroline’s rash seemed to be going away, many of the spots had turned into scabs and fallen off. Her vitals were all still great. Her blood work had all looked fine. The doctor told us on Monday morning that she seemed to be doing great and the biopsy should be back that day. Because she was doing so good they were going to prepare us to go home! We were so relieved to be going home!
Then around 11 am we were in the breastfeeding room, Mary Caroline was eating and we heard a knock on the door. I excitedly told the doctor to come in since I thought we were getting our discharge papers. I was wrong. The nurse closed the door behind him as he explained the biopsy results were in. He told us she had Langerhans Cell Histiocytosis, a type of cancer. He told us that in his 30 years of being in the children’s hospital he had never seen or heard of the disease. At that moment our lives changed forever!
We spent another week in the children’s hospital. That week is one big blur of doctors, blood tests, ultra sounds, x-rays. No one seemed to really know much about this awful disease. We were getting our information online, the same way the doctors were. Finally, a week later when we were getting ready to go home, still knowing nothing, the oncologist there wanted to reassure us that they would be able to take care of her. He reassured us by telling us that they had in fact had another baby there with LCH… a six month old… she died. That was the whole reassuring story, we were shocked and at that moment I knew I had to find a doctor who knew something about histiocytosis.
During our own online research my mother came across the name of Doctor Kenneth McClain, a wonderful doctor in Baylor, Texas who specializes in histiocytosis. We were fortunate enough to bring Mary Caroline to see him. We also have a great oncologist at the UVA hospital in Virginia that we see monthly. With the help of great doctors and an amazing support group made up of other histio warriors and histo warrior families we now understand what we are dealing with.
When a person has histiocytosis, their body produces too many histiocytes, a type of white blood cell that normally fights infection. The overload of histiocytes then attacks the body. Right now Mary Caroline has skin only involvement, but at any time it could spread to her organs or bones. For right now, we are watching and waiting. The only treatment available for histio right now is chemo. We are very afraid of the effects of chemo and have chosen to watch it very closely. If the doctors see any indication that it is spreading we will start chemo. But there is a chance that it won’t spread and will need no treatment. Most cancers have a point when there are no new symptoms for a period of time and the person is considered in remission; histio has no true remission period. We will worry every day for the rest of her life that it will come back.
The survival rate of a histio warrior is 60%. 60% is not enough! Researchers are trying to find out more about histio, what causes it, ways to treat it, and are looking for a cure. These researchers don’t qualify for government funding because histio is an orphan disease, effecting less than 200,000 people. It’s also believed that histio is not so rare, just rarely diagnosed… or misdiagnosed. Too many doctors don’t know about histio to even consider it as a diagnosis.
If you want to help us fight this nasty disease by making a donation you can do so by going to http://www.giveforward.com/teammc, or if you’d rather help by donating the gift of gab, tell someone about histio, tell everyone about histio!
September is Histio Awareness Month: Save lives by making early detection/diagnosis probable. The more people correctly diagnosed means more lives saved and it brings us closer to a cure by giving researchers more patients to include in studies, and gets us more funding opportunities! You can also donate at Histio.org!
Sarah and Matthew will be at the Caged Kombat MMA event in Appalachia, VA on October 13th, 2012 to raise awareness about histiocytosis. They’ll be selling awareness decals, Team MC (Mary Caroline) awareness t-shirts, passing out t-shirts, and raffling off a gift basket. If you’re in the area, stop by and give your support!