We have been talking the past few days regarding Carly and her continuously low platelet count. Let me back up a bit. Last Friday, I emailed our NP (nurse practitioner) with concerns as to what needs to be done for Carly. Honestly, I want to know why this is going on. What, if anything we can do about it. And, how in the world do we decide that it is, just a platelet disorder and nothing more. Wow. Just a platelet disorder. I do NOT like the sounds of that. Not one bit.
The NP returned an email to me almost immediately. Our Oncologist was in clinic that very day, so she too read my concerns. They tell me there is really nothing more they can do. They have run all blood work known. They did the bone marrow biopsy. Running 3 specific tests off of the biopsy. The big one being the cytogenetic test, which came back perfectly normal. So everyone is very confident there is no sign of relapse now or in the near future, (can't say never when referring to relapse, 'cuz it can happen at anytime) according to all tests preformed via the bone marrow biopsy. Although the NP and Oncologist did offer to send Carly to another facility (after I mentioned it) for a second opinion. If that would make me feel better. They also offered to do an ultrasound of the spleen to see it's function. However, they both said that Carly's spleen is normal. Per physical examinations that have been done over the course of 2 straight months.
Paul and I are trying to decide just what, if anything we should do. I know that if Carly has a platelet disorder, there really is nothing that can be done for her. Other than monthly monitoring of her platelets. I know that if they transfuse platelets, for a platelet disorder, it does no good. They will be eaten up as quickly as they transfuse. Sometimes, they will give a dose of steroids to give the platelets a boost. Only if they drop too low. Danger zone is 20,000 and less. Carly was at 62,000 last week. Then, there is something they sometimes give called IVIG. I'm not really familiar with this. I know some kiddos who have had AML leukemia, and have received this. Not sure what it is really. Or what it does. Guess I had better research it.
Carly is due back in for lab work in about 3 weeks. I think we have pretty much decided to get that lab work back and go from there. I hate the thought of getting a second opinion. Mainly because I know another facility will likely want to run their own series of tests. I hate the thought of putting Carly through any more than she really needs to be put through. Don't get me wrong. Our clinic is fantastic. I love our Oncologist and our NP. I trust them wholeheartedly. It's just that I'm so uneasy about these platelets. I'm terrified that they will suddenly plummet too low. How will I know? What if she falls? What if she hits her head? What happens if she starts to bleed internally? How will I know this??? Oh this is so frustrating. I'm just hoping and praying that these platelets will eventually resolve themselves.
In the mean time, we are left with the question of, "What to do"? I guess we'll just pray. Pray that somehow, someway, this problems resolves itself. It's so upsetting. We were just about to finish up our last 6 month clinic visit before being turned loose for 1 clinic visit per year! This stinks. It stinks bad. I thought we were in for smooth sailing. Guess not. Carly has thrown us another curve ball in this ever changing life of hers. I wish I could just take it all in stride. Just like she does. But, I'm a mom. A worried mom. A scared mom. A mom who wants her daughter to be healthy. A mom who is tired that her daughter has been through so much and continues to have to through so much. I'm thankful for Carly and the fact that she is such a trooper. She continues to march forward, through it all. And I will continue to march, right along side her.
1 day ago