"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Sunday, June 7, 2009


I'm sorry. I did intend on picking up on Carly's story this weekend. I just don't have it in me right now. I'm scared, frustrated, angry and sad. I don't understand what is going on with Carly and her blood work. I know the doctors say it's not leukemia. My question then. What the heck is it???

Our NP did mention that there is a "condition" as she put it, called ITP. Basically this condition can be had by anyone. Not just people with Down syndrome, not necessarily people who have come off treatment. I didn't ask how they would conclude this type of diagnosis. Didn't want to know just yet.
Also, we were told that the clinic has a few kiddos who, for some reason after treatment did this very same thing with their platelets. Whatever the case. I'm tired of all of it. I want my daughter to be healthy. I want her to enjoy every single day. I too, want to enjoy every day. This is causing me much grief and worry. The other thought with Carly and her platelets is that she just hasn't fully recovered from her viral bug. Too many thoughts and no concrete answers is just driving me crazy!

I pray often that her platelets will recover. However, she now is battling some sort of sinus thing. At first I thought is was allergy related, but now I'm just not sure. I have to go to the doctor tomorrow and plan on taking Carly with me. I know when the doc takes one look at her nose, he is going to want to put her on an antibiotic. Which will in turn, cause her blood work to be slightly off, again!

Anyway, I PROMISE, I will post the continuation of Carly's story. As soon as I get my head straightened out.


Denise said...

Hang in there and try to be patient. They haven't seen any blasts right??? I had a doctor tell me once (since we see similar things with Ella's platelet fluctuation) that everyone has their blood counts go up and down at times but we aren't always looking at our blood counts so we don't even know it. Sometimes I am glad that they look constantly so we know exactly where we stand and sometimes I think it would just be better to wait until she gets sick so that we aren't always so anxious. Sometimes, ignorance is bliss!!! (I have no idea if any of this makes sense..I have a bad headache and my mind feels foggy) Just know that I am thinking and praying for you!!

Stephanie said...

I'm sorry you are having to deal with this, I hope you have a solid answer soon to what's up with Carly. Not having a sure answer can cause your mind to take off in all different directions.I'm praying for you.

Pam said...

Ugh. Not what you need huh? I swear my hair gets grayer each day with Rhett.

Sighs. Sending you lots of ((HUGS)) and prayers.

Pam and Rhett

Michelle said...

how frustrating! i'm sorry you don't have any hard and concrete answers to what is going on with her platelets :( Praying this all gets figured out!

Stephanie said...

Hey there, I just found your blog today and I was reading some posts. I am a 37 year old Mom to a Ds kiddo and I have had ITP since I was 20. No cancer or anything in my past, just funky blookcounts all the time.. seriously. When I delivered my kids I couldn't have an epidural or certain other things because of chronically low platelets. I have to use common sense precautions as if I were on a bloodthinner. I can never use aspirin because it's a bloodthinner.. you get the picture. It can be scary, but as long as you monitor it closely, it's manageable. Best of luck and try not to worry too much. Ok, I know that's easier said than done!