Some Days I Just Want to Cry

Really. I sit here as I type this with tears in my eyes. Tears of love over my daughter. Tears of fear for this stinking ITP she is battling.

When she got home today, I did my customary body check for petechiea, something I never imagined I would be accustomed to doing. As I looked over her little body, I saw the spots, and my heart sank. In my mind, I was screaming, "No, not again!".

I am full of fear.

This can only mean her count has dropped more since her counts were done yesterday. I just want her to be healed. I knew going into this that it could be a long battle. It could be a one-time occurence, or this could be a chronic disease that she fights. I hate not having the answers.

I want this to go away and be a distant memory. Will it? Right now it doesn't feel that way.

I think about all the things that can happen. If she falls, if she gets a bad cut, what will happen? I know sitting and worrying over this is not helping, but I can't seem to stop. I just feel so helpless. No mother ever wants to hear their sweet, precious little 6 year old say that they are used to getting their blood taken. That's what she says now. She wanted to know if we would have to go tomorrow now since she has developed petechiea...and I don't have the answer. That hurts, deeply. When those eyes look up at me, I want to be able to give her all the answers she desires.

I also want my mom. Not to say that I don't have a great family support system, and a wonderful step-mom, but sometimes, you just want your mom, and I do. I just keep thinking about something she told me long ago...Pray without ceasing. So that's what I'm doing, praying without ceasing.

And so everyone can think I'm completely crazy, I know my mom is with us.

Of course, with my faith, I know she is in heaven. But, I also believe her spirit is here with us. There are things that have happened that can only lead to her being here. Some nights I go to kiss Caroline's sweet head after she is asleep, and I can smell my mom on her cheek. Her perfume. Her signature scent, that I might add, I've never known anyone to wear, but my mom. And it comforts me to know that she is here, that she loves Caroline from afar, and that looks over her. If that makes me crazy, fine by me.

I also find comfort in one of my most favorite scriptures. "I can do all things through Christ who strengthens me." Phil. 4:13

No, I can't heal her, but I can find strength in Christ during these painful times. And that's what I need. I can have comfort in my faith, comfort that He can heal her.

I plan on getting up in the morning, and doing our usual routine. I plan on calling the school and telling them to restrict her activity, and that breaks my heart. She loves her school and playing with her friends. And then, I'm going to wait patiently {ha} until 9am when her doctor's office opens, call and see what we do next. Do we still wait until Friday to check her counts, or do we need to come in today? Then what?

For now, I am going to kiss my sweet baby girl goodnight. Of course, she's been alseep since 8:30, but I can't seem to find some peace so that I can sleep. I'm just going to pray myself to sleep...after I read a little Twilight.

Keep us in your prayers or thoughts please? I do have great comfort in knowing that I have friends to stand with me.

Latest on Tab & Caroline

We are sitting here in the hospital, not a very cozy place, talking about our sweet Caroline. Tab isn't getting any better, and we are waiting to see what the next plan is. For now, he justs keeps getting the meds and waiting. The blood cultures should be back on Friday, so hopefully we will have some answers then.

My beautiful little girl.
She is very sick. She has a long road to go. We went to the the specialist today, and learned a lot. Her platelet count yesterday was a 10, today it was a 2. I asked the Dr. what happens if it gets any lower, and her response was, it can't. They gave a 3 treatment options, and we are going to see what happens next. The 1st was a round of steroids that will last for 2 weeks, the 2nd was to admit her and do IV Immune Globulin Transfusions for days, and the 3rd was a 1 time IV but it has some scary side effects.

My gut reaction was to put her in the hospital for 5 days, but her dad didn't want to go that route. We ended up opting for the steroids. The only thing about this is that after she's finished, her platelets will drop again until they slowly start to rise. The 5 day IV will get them up and keep them there.

What makes this all so difficult is that while her platelets are so low, she is in danger of internal hemorrhaging. If she gets the slightest bump of an arm, or falls down, there is a strong chance she will bleed internally. If she gets a cut, she will have excessive bleeding because she doesn't have enough platelets to clot her blood.

The nitty gritty
She can have NO activity. NONE. She is not allowed to play outside. Period. She can't swing, ride a scooter or bike, she is only allowed to stay inside and color. This is going to be the hardest task I have ever been delegated to do...keep a extremely active 6 year old totally inactive! We have to meet with the school tomorrow to see if they will be able to comply with this, if not, then I have to stay home with her.

The petechiea is worse, a lot worse. And she has bruises all over her little body. If this keeps up, or she has any more nosebleeds that are hard to stop, then they will test for more serious diseases. And make no mistake she has a severe blood disease, that may or may not go away. If all goes well, she will get the all clear in about 8 months. But every time she gets any viral infection, we will be back to square 1.

We have to go every week for the 1st month to have her counts checked. Then we move to every 2 weeks, then on to 1 a month for about 6 months.

I think I have touched on all the major points of ITP and how it affects Caroline.

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I know I have so much to be thankful for right now, PRAISE God it's not Leukemia! But that doesn't discount the seriousness of the disease. We have a long road ahead of us, and we just have to keep praying that He will heal her completely. For now, I will try to keep my chin up.

Thank you to everyone that has kept us in your thought and prayers! Please keep it up!

Update: Tab & Caroline

Oh how I wish I was writing to say thank God, they are all better!

Tab was admitted to the hospital today at about 2pm. They expect it will take several days to get the staph out of his system. They had to go back and re-open his "wound" and drain and clean it, then re-pack it. He is on the strongest antibiotic to fight MRSA. They also gave him a super dose of steroids to boost his immune system.

Caroline is a whole different ballgame. I have cried so many tears today that my eyes are nearly swollen shut. Her dad, Steven came down to help out, and while I was getting Tab into the hospital, he took Caroline for her appointment. Her fever never would completely go away. She has these tiny red dots all over her back and legs, and lots of bruising., along with the constant head ache.

Steven called and said the words no mother {parent} ever wants to hear. They want to admit her to the hospital. I really thought I was going to pass out. I requested they do bloodwork on her because of the bruising and she has had about 8 nosebleeds in the past month. The bloodwork came back, with bad news. Her platelet count was really low. About 10,000. They got on the phone with some specialists, and decided their course of action.

She was diagnosed with Idiopathic Thrombocytopenic Purpura:
The exact cause of ITP isn't known. For that reason it's referred to as idiopathic — meaning "of unknown cause." It is known, however, that in people with idiopathic thrombocytopenic purpura, the immune system malfunctions and begins attacking platelets as if they were foreign substances.
Antibodies produced by your immune system attach themselves to the platelets, marking the platelets for destruction. The spleen, which helps your body fight infection, recognizes the antibodies and removes the platelets from your system. The result of this case of mistaken identity is a lower number of platelets than normal.
A common cause of petechiae is a low platelet count (thrombocytopenia). Platelets are blood cells that play an important role in blood clotting. Causes of a low platelet count include:
§ Autoimmune disorders, such as lupus or rheumatoid arthritis
§ Viral infections, such as mononucleosis and measles (rubella)
§ Side effect of certain medications, such as chemotherapy drugs
§ Bone marrow disorders, such as leukemia
§ Infection of your bloodstream (septicemia, or "blood poisoning")

In basic terms her platelets are attacking each other. The little red dots are Petechiae, which is explained above.

We will be going to see the Hematologist in the morning at a hospital an hour away. They are going to run a full blood panel on her, along with some other tests, but they wouldn't elaborate. We won't know until then if they will hospitalize her or not. If her platelet count drops any lower, they will.

What makes this whole thing worse is that a little over a week ago, I was talking to her dr. about the nosebleeds, and she said she would be worried if she saw any petechiea, as it is usually a sign of Leukemia. And then today she is covered with the petechiea.

Needless to say, I am falling apart. My husband is in one hospital with a severe staph infection that if it has traveled to his bloodstream could be fatal, and now my daughter may be hospitalized due to ITP, which could have far worse possibilities than just a passing thing.

I know I am the first to say that He will take care of us, and that He has a plan. But when its slapped in your face, it is so hard to hold onto that. No, my faith in God is not wavering. I am just in a low place right now until I can process all of this.

Please pray for my dear sweet family.