I believe I have previously stated my opinions about the Down Syndrome Clinic here, but just in case I haven’t…it is a waste of time. I didn’t remember today’s appointment until it was too late to cancel it, so Averi and I went, sat around forever, and told them everything that we tell her pediatrician (very productive).
While there however, I asked them about the red dots that Averi has had all over her body for over a month. They are not raised and don’t blanch when pressed on. I thought it was another allergic reaction and have been waiting for them to go away. Dr. Nash sent us to the lab to have blood work done because she thought it might be a response to low platelet counts.
I went down to the lab and the wait wasn’t too long so we signed in. I totally forgot that Averi is a really hard stick. Long story short, it took warming her arm, holding her down with three people, moving the needle around in her arm for quite a while, and letting blood drip down her arm because of a blown vein to get enough blood to run the tests. I won’t even get started about the size of the bruise.
Then, at 5:00 tonight, I got a call from Averi’s pediatrician telling me that he knew Averi had had some blood work done to test her platelets. He started telling me something about changing some appointment when I explained to him that I hadn’t talked to anyone about the results. He took a breath and started to explain.
Averi does have a low platelet count. It was looked into farther and they found a large amount of blasts (immature blood cells), which have essentially pushed the platelets out of the way. The blasts are present in more than 10% of her blood and those levels are found in people with leukemia.
My world stopped and I broke down in tears. The rest of what he said was a blur…more common in people with DS…admit to the ER tonight…bone marrow biopsy…can’t do the tests tonight…appointment in the morning with hematology/oncology…admitted to the hospital tomorrow.
I got off the phone, couldn’t get a hold of Dan, ran over and hugged and kissed Averi, and then announced to the girls that we were going for a walk because I couldn’t just sit in the house for another minute. Then I took a bunch of pictures of her because I didn’t know when I would see her outside of a hospital setting again.
I am totally in denial until we get the results from the bone marrow biopsy (hopefully tomorrow). The only thing I know for sure right now is that Averi must have one heck of an awesome spirit because there’s no way that what she has been given in this life is in any way fair. Is it crazy for me to want her to have a somewhat happy and successful life?
She is a fighter and she will keep on fighting!