Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Well, it's been a tough few weeks, but since rare disease day is coming up, I thought it would be a good time to let everyone know what has been going on.
On the morning of my birthday, keith noticed that Benny was guarding his left leg. We took him in to get x-rays, and were admitted to the hospital later that day.
We were hopeful that Benny just had a bone infection, but we found it strange that he didn't have a fever. After an MRI, the doctors went in and fount a cavity the size of a dime in his upper femur, but nothing in the cavity. Also strange.
After waiting for what felt like forever for labs to come back and more x-ray results, Benny was diagnosed with langerhorn cell histiocytosis (LCH* for short). At his age, this diagnosis is 1 in a million.
After another mri and more labs, it turns out that Benny only has a single cell involvement (in the bone), and a half a dozen lesions, some of which are on his vertebrae, ribs, and the one in his femur. None on his skull, thankfully.
We stayed in the hospital for about a week, and on his ten month birthday got to go home. At home he has been doing well, is beginning to crawl again, and wants to stand for short amounts of time. He's learning to take all of his medicines well, and is beginning to have a big appetite again.
A few days ago we stayed overnight in the hospital to have his port placed, and to begin his treatment of daily steroids and weekly infusions of vinblastine (chemo). He will have weekly infusions until the six week mark when he gets another full body x-ray to make sure the treatment is working, and then hopefully, he will only have to get infusions every three weeks for the next year.
We are greatful for the quick diagnosis, that we found it when we did, for the great medical team he has, that there is a treatment plan, and for our family and friends that have been supporting us with love, visits, play dates, and food!
I hope to use this website to update everyone who is interested on how Benny is doing, and what this year will be like for us.
Thanks for visiting and thinking of us!
*If you decide to look up the disease be prepared because it looks scary, just remember how good Benny looks and how well he's doing (and that his is a single cell involvement)!