All,
I haven't been to the boards for months, which is probably typical of those whose stories improve. My 20-year old son was diagnosed with ITP in January, later clarified as ITP and Lupus. The first 6 months of this year were absolutely horrible. Thank God, things are fine now (other than the post traumatic stress we all feel, and the lingering specter of vulnerability that I suspect will linger, even if things stay great).
I greatly benefited from the information at this site and on these boards, and told myself that I would share our son's story in some detail at some point, in case it might help guide or reassure or inform others facing this awful challenge. I'm not ready to do that justice (with details on the cycle of ups and downs and treatments and trials.
I promise to do so for those who look for treatment insights and want those details (I did), but for now, I thought I would at least share this: it can get better, and most likely, it will get better. Don't give up hope, don't despair. Stay patient, stay strong. Take care of yourself and your loved ones. Pace yourself. Exercise, eat right. Accept help. Pray. Distract yourselves. Laugh. Take a deep breath. Take another. One more.
6 hospitalizations (maybe 7?). Many months of roller coaster counts, many below 10. Awful steroids that never seemed to help. IVIG that did, and then didn't, and then did, but less, then didn't, again and again. WinRho that caused some serious issues and didn't work. Some pressure to proceed to splenectomy, resisted, with fear and guilt and uncertain concern. NPlate that seemed to work/help quite a bit, but not completely. Finally, Rituxan, which either worked to trigger a sustained remission, or maybe something intangible or separate kicked in? So hard to know.
What we do know is that normal counts returned, and were sustained for weeks, then months, then, a half year and counting. Things got better. I don't say "fine" (but they are, amazingly).
I know there are so many reading these boards with their own struggles and stories. I wanted to let you read a "happy one", and to share a message of hope and support. I remember being warned about reading "boards"--they are where you go, and post, when things are hard, and bad, and worse. When things go well, or get and stay better, you tend to want to cleanse yourself from the stress associated with the experience, and for many (and, as it turned out, for me), that means that the success stories get under-reported. I think that is fair, so if it helps you get through all of the struggles reported here and hold onto hope, I share that insight with you. For those still waiting for "fine", know that there is hope for you, and prayers, and good will and love.
