150 days in!

Well, I haven’t written in at least a day, so I wanted to sum up and catch you up with what’s going on. Sophie (my 9 year old) is on day 150 of dealing with “Ouchie the Bump”, and the subsequent diagnosis of Histiocytosis-X, More specifically, Langerhans Cell Histiocytosis. Sophie has been dealing with constant headaches, fatigue and fevers since 2/02/2011, and some before that. She came down with a sinus problem and ear infection on Sunday evening and was at the pediatrician yesterday, who gave her antibiotics as treatment. She is improving and is at school today though she may end up calling wanting to come home before long. She’s exhausted, poor thing.

I got a call this morning from the Neurologist’s office. They were saying it was going to be April 7 before they could see her as she would be a new patient, but he had a cancellation, so we are going tomorrow afternoon! I am excited because I think he will be able to shed some light on what is going on in many of her test results as well as explain some of the neurological aspects of LCH and what the neurological community thinks about the disease and what to watch for. I am optimistic about tomorrow.

This doctor is the same neurologist that Aiden has been seeing for the last year and he’s completely changed our lives. He’s an excellent doctor and takes the time to talk to the kids and to the parents about what’s going on before running a bunch of tests. He diagnosed Aiden with Cerebral Palsy (mild) and Epilepsy and was the doctor to first prescribe Aiden with the medication that was able to keep the seizures to a minimum. We have recently had to increase Aiden’s dose of the medicine he’s on, but I think he should level out soon and get used to the new dosing. He’s 22 months and doesn’t yet understand what all is going on with his body, I don’t think. He’s up to 7 cc’s a day total, and his body just needs to adjust.

Sophie is hanging in there, she’s just frustrated too as am I. We don’t go to see the Oncologist at the cancer center ‘til Monday. It’s been over a month we’ve been waiting to have the test results read and find out a prognosis and what to expect and because the future can be very uncertain with this disorder.  

Contrary to what some people think, Langerhans Cell Histiocytosis is a disorder/disease that Sophie will carry for the rest of her life. It’s not a illness like a cold virus or a stomach problem that will go away with treatment. Langerhans Cell Histiocytosis can go into remission, but it is a disorder in which the patient’s own cells are attacking itself instead of fighting infections. There is no known cause, and it can come back very little notice even if it does go into remission. There is very little known about Histiocytic disorders because they affect so few patients yearly. It’s considered an “orphan” disease because no one knows how to classify it.

On an emotional note, I am tired. Tired, tired, tired… I am still plugging away at work every day and my company has been incredible and understanding given that I have had to miss some days this year. I hate being away from work, but I know that right now, my family has to be my number one priority.

Hope is here. I am not giving up. I will not grow weary because I know Christ will see us through this.

As we approach lent, I propose what the Upper Room proposes… Talk together about special ways you can observe Lent, both individually and as a family. (For instance, will you add to or begin a daily family devotional time? Will you give up desserts or snacks and donate the money you would have spent on these items to a local food bank? Will you limit television watching to give family members more time for prayer and Bible reading or more time to spend together? Will you perform some needed act of service for a neighbor or invite someone who is lonely to share a meal? Will you invite a friend or neighbor who doesn’t usually go to church to attend with you?)

God Bless You

Talk to you soon!!!

This picture isn't recent, but I just thought it was too cute not to share!