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

Monday, July 27, 2009

What to do?

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.

8 comments:

Cammie Heflin said...

I will pray with you!

Mommy to those Special Ks said...

We'll be praying too! Kennedy had IVIG a couple times when her platelets were low and wouldn't recover. Once was during treatment and once was about a month after her treatment ended. She had no side effects from it at all. If I remember right, the pre-meded (that word doesn't look right) her with Benadryl first. We'll be praying for Carly and for you too as you make these decisions. There's nothing worse than NOT knowing!

Lacey said...

They talked about IVIG with Jax for his out of control siezures. Don't ask me how it helps. I haven't really researched it either, but I believe its just a transfusion, like blood, but different products.

Denise said...

It's interesting being on the other side of leukemia. The side before having it. I am actually hoping that with Ella it is just a platelet condition because I hate the thought of entering into the world of chemo. We are still awaiting the cytogenetic results of her bone marrow. I, too, just want her platelets to go up so we can not worry about falls and bleeding etc. I think you are right to see what her next labs show and then make a decision about the second opinion. Maybe you will be able to just take your paperwork with you to see if they concur??? Don't really know how second opinions work.

My name is Sarah said...

This is Joyce. Sorry to hear that Carly is throwing a curve ball your way. Sarah did get monthly infusions of IVIG for about 14 months when she was 9-10 years old. For her it was a last ditch effort to try to pump up her immune system to help her fight off the chronic lung infections/pneumonias she was getting that stopped responding to antibiotics. I do not think that Sarah would be with us today without that product but it does not sound like the exact set of circumstances for Carly. There is a lot in information out on the internet about it. I sure will be praying they can figure out what is going on.

Heather said...

I am so sorry that you continue to worry and wondered and dwell in limbo.I have a platelet disorder.ITP.Chronic low platelets.Nothing is done unless I have to have surgery and during pregnancy they really plummet.What I learned about platelets through my disorder and Zoey's treatment is this,hope I can explain it properly.With a higher platelet count there are old platelets and new platelets.Platelets have the ability to rejuvenate very often,they can fluctuate hour to hour.So sometimes,even with a low platelet count there are a great deal of new and sticky platelets that will more than take care of Carly if she were to fall.Maybe that will take care of the part of your worry of falling or being cut.the rest of your worry I have no words of wisdom.I wish I did.I wish I had the answers.Instead I will say a prayer for rest to your worried heart.

Heidi said...

I feel so badly for you - that you were looking forward to a good year ahead and now have this worry. I'll be praying for you as you try and decide what to do next.

Debbie Yost said...

I am so sorry you are going through yet another trial. I'll be praying as well. Keep us posted and hang in there.