Hi,

 

My name is Cindy, this is the first time I have written anything on this forum. I joined about 4 months ago, and it has been a WEALTH of knowledge.

 

Gabby is 14 and last April we came back from a skiing vacation where she felt horrible. She was very pale didn't feel well. Then she got her period. After 3 weeks I came home to find her on the couch limp and unresponsive. I took her to urgent care who said to take her to the hospital and then we were transported to a local children's cancer /oncology unit where the doctor was there evaluating every vaccination she had ever had until 3:00am in the morning. It has been a year of trying to find a solution to something that can hit at anytime in a childs life. We have a total of 6 children, the 4 I had were with a loser which has not had contact with them for 10 years.

They then told me she had Evans Syndrome. She has NO platelets and she has coombs blood as well. We has a transfusion and then we have been on steriods since April. We have been through a nightmare journey because we all know what steriods do to anyone especially a 14 year old).

On this forum I learned about rituximab. I suggested it to my oncologist 2 months ago, and we just finish our 4th dose. We have been in ICU since thursday,(today is valentines day) because her white blood count is in the super danger zone, they finally let us go home, but she can have NO contact with anyone because of germs. Her platelet count is at 100k for the fist time since December. It was at 10 when we started the the rituximab 4 weeks ago.

My daughter has stretch marks on her arms, her legs and everywhere due to steriods. Before this started she was the most wonderful human being god put on this earth. Now that she has not been on steriods she is back to normal and her spirits are lifting now that we are done with our last dose of rituxumab. It is very hard on the body, but it is NOT a quick fix. It has been very hard and has been hard on our daughter, but she will tell you it has been worth it.

 

Today, I am pleased with our results, but do not wait as long as I did to suggest the rituxumab, because her stretch marks are horrendous and children are cruel. I am not telling you what to do, but I am telling you, that we have seen a ray of light since we have started this journey 6 months ago. My daughter is back to her happy self since she is NOT on steriods and who knows what will happen in the next 2 weeks. I do know her body is responding and she is starting to make her own platelets, the docs are saying they are excited about the current progress.

 

I wish you the best, it has been a long and hard journey, but the people on this forum, have taught me more than what I would have ever learned anywhere, and are the most compassionate, determined, knowledgeable parents, that you will ever meet. I feel like even though I have never responded or met any of them, they are the reason we are as far as we are right now.

 

Thanks to all of you, I treasure every minute with my daughter, good and bad, and with all of your knowledge I know enough to be dangerous and make a doctor listen.

 

Thanks to all of you. I am thankful for this forum.

 

Cindy Sherwood

 

 

--- On Sat, 2/14/09, Nikki <whemenway1@...> wrote: