Giving Up My Samantha, Part 2

Click here for Part 1

We waited in the office for the doctor to give us the results of the blood work.  Samantha and I were both starving.  She was accustomed to her cereal and fruit, so my milk wasn't quite cutting it for her anymore.  We sat in that room and nursed and cuddled and prayed- that's how the doctor found us when he walked in to give us the news.

"I'm admitting Samantha to the hospital right now.  But first I have some questions that you must be very honest about, okay?"

"Admitting her to the hospital?"

"Has she fallen an hit her head recently?  Please think carefully, I need to know."

"Well, um...she's learning to cruise a bit.  I can't remember any specific instance, but she might have bumped her head.  She also bumped into the coffee table - that's why she has this bruise on her forehead."

He quickly looked into her eyes, inspected her head, checked her reflexes.

"WHAT IS GOING ON?  Why are you admitting her to the hospital?  What did the blood work say?"

With a heavy sigh, the doctor stopped his inspection of Samantha.  "Well, she seems to have not hit her head too hard.  We'll pass on the scan for now."

"Stop.  Tell me what you're talking about.  Tell me right now."

"Sorry.  I had to just check her to make sure there isn't something going on in her brain.  She has a dangerously low platelet count.  Do you know what platelets are and what they do?"

"They're a part of her blood, right?"

"Right. They're the part of her blood that is responsible for clotting.  That's why they had to wrap her arm up in that giant bandage after a simple needle poke.  Her body should have clotted that off almost immediately, but it didn't.  It's also why she has these red dots all over her body.  Those dots are not a rash, they are petechiae ("pah-teek-ee-ah").  They are tiny little bleeding spots just under the surface of her skin. "

"So what does this mean?  Does she have cancer?"

"Well, I don't know yet.  Cancer is a possibility.  Your blood is manufactured in your bone marrow, so a cancer of the bone marrow could lead to a low platelet count."

"Why are you admitting her to the hospital?"

"A normal platelet count is between 150,00 and about 350,000.  Samantha has 5,000.  Obviously, that's way too low.  At levels like that, we worry about internal bleeding.  That's why I asked you about hitting her head.  A minor bump of the head can result in very damaging or fatal bleeding in the brain.  In fact, at the low level she has right now, it might not even take a bump.  Internal bleeding could start spontaneously, and with her having so few platelets, we would not be able stop it."  He paused and looked me in the eye - searching to see if I heard and understood what he was saying.  I did.  He was talking about my baby dying - maybe right now, right here in my arms.  I held her and looked at her and willed her little body to fight and to not start to bleed.

Oh Lord, please help us.  Please don't make me give up my baby quite yet.  Hold me, Jesus.

"We have to admit her to get some meds going...hopefully they will help her platelet count rise.  For now, her diagnosis is ITP.  I'll call the escort to come and walk you through the tunnel to the hospital."  And he was off...

I later learned that ITP stands for "Idiopathic Thrombocytopenic Purpura".  Yeah, we stuck with ITP too!  "Idiopathic" basically means that they don't know what caused it, "Thrombocytopenic" refers to a low platelet count, and "Purpura" referrs to the bruising that typically comes with this disease.

So great, ITP that may be caused by cancer.  This can't be happening.  Just that morning we woke up a normal happy family, and now...cancer?  This just can't be happening.

The teenaged boy who was our hospital escort walked us through a maze of underground tunnels and doors to the hospital.  All I could think was "cancer".  

Well, and "Please, no.  I'm shaking like a leaf, Lord."

There was one bright ray of hope in the back of my mind, though.  When I was pregnant with Samantha, we made arrangements to bank her cord blood.  It was expensive, and we didn't really have the money.  But for some reason, it was very important to me.  Was this very situation the reason we banked that blood?

My thoughts were interrupted as we arrived at Samantha's room.  I was very thankful that I was still nursing her, because I was part of the package when it came to admitting her.  I got to stay with her 24/7, I could order food from the cafeteria, and I could sleep in her room with her.  When they told me this good news I remember thinking "Well, good because you sure as hell wouldn't get me to leave her here alone!"  

I get a bit feisty when my babies are threatened.

One of the worst parts of getting her settled into her room and on the necessary medication was getting the IV started.  Oh, that poor child.  The nurse had a heck of a time getting an IV started, but kept trying and trying. 

"Listen" I said loudly over my squirming and screaming baby girl, "I don't mean to be rude, but I don't have a whole lot in me right now enabling me to be polite, so I'm just going to speak my mind.  Get someone else to do this.  Right now.  I want your most experienced IV person.  You are not poking her again."

The poor nurse opened her mouth to protest, but when she looked at me face, she thought better of it.  She left quietly to find someone else.  The next nurse got it on the first try.  

I'm all for nurses learning, and practicing.  I also realize that I probably made that nurse feel or look bad.  But frankly (pardon my language), I just didn't give a crap about anything or anyone else but Samantha at that time.  Practice on someone else, lady.  I want the best for my baby, and I want it NOW.

They started the medicine via the IV, and then it was just a waiting game.  It was some pretty heavy duty medicine, so they had to check her frequently to make sure that she wasn't having a bad reaction.  Nobody slept well that night.  Sammy for all the checking on her they had to do, and me for all the crying and praying I had to do.  I had held it together for her all day, but when the sun went down and she was asleep for the night, that's when I got real with God.  That's when I did my crying, my begging, my bargaining.  

One of the most difficult parts of those first few days was the not knowing...not knowing the cause of her ITP, and fearing the worst.  The doc told us that if she reacted to the medicine they were giving her, then it was a good indicator that it was an ITP that was NOT caused by cancer.  Oh, please Lord, let her numbers come up with this treatment.

They tested her blood regularly to see how she was reacting.  Her numbers came up slightly.  She reacted, but not very dramatically...did that count?  Does it mean that she doesn't have cancer?  The doctor wouldn't say, but he didn't seem encouraged.

While on the pediatric oncology floor of the hospital, I saw and heard more than I ever wanted to.  The other families on that floor sort of kept to themselves - they probably felt like I did - like they didn't really care a whole lot about what was going on with anyone they needed to conserve as much energy as possible to they needed to circle the wagons around their sick little one and just. get. through. this. damn. day.

So we didn't exactly chat with each other.  But I felt like I got to know people just by observation.  It was a strange thing, watching other families suffer.  There was an odd comparison going on - everyone stealing glances at other people's kids and wondering, "What do they have? Will they make it?  How is their family coping?  Is theirs better or worse than ours? "  

There was one family in particular.  The little boy was probably about 8 years old, and he clearly had cancer.  The bald head doesn't lie.  Neither does the mask to protect a weak immune system against germs.  Neither does the pained look on his parents' and older sisters' faces.

One day, I was standing to the side of the nurses station waiting for my doctor to finish his conversation with another doctor.  I didn't intent to over-hear, I just wanted to catch my doctor to ask him a question.  But then he held up the scan of someone's head, and you could clearly see the problem.  "It didn't work" the other doctor said in a hushed voice as he shook his head.  They were referring to "room 34"...the patient in room 34...that little boy.  They were at the end of their treatment options of him and they were talking about telling his family.

I walked away, my question forgotten, to cry for that family.  It's just not fair.  Why do some lose their babies, and why do some not?  Which would I be?

We stayed in the hospital for several days while Samantha had her treatment.  Her platelet levels went up to the point where she was a bit more was still not completely safe, but spontaneous hemorrhaging wasn't as much of a concern.  They sent us home with the instructions to keep a close eye on her and to rush her to the ER if she had a hard fall.  

Time would tell, they told us.  We were to go back in a week to have her tested again.  If the treatment worked, her platelet count would be on the rise.  If it didn't, it would be down again.  

If this treatment didn't work, we'd have to go to Plan B.  I didn't know exactly what Plan B was, but I was hoping against all hope that we wouldn't have to find out... 

Please, Lord.  Be my Prince of Peace.

Beth in NC  – (2/16/2009 06:46:00 AM)  

I am weeping. I can feel the anxiety and the desperation. God bless you.

Mel  – (2/16/2009 07:21:00 AM)  

My heart is in my throat and my stomach is turning...

Anonymous –   – (2/16/2009 08:00:00 AM)  

I know just what you were going through...we had a very similar experience with Ryker. I'm glad I already know there is a happy ending. :)

Anonymous –   – (2/16/2009 11:27:00 AM)  

WHAT HAPPENED???? Is your baby ok??? WTF..hello?

Anonymous –   – (2/16/2009 02:32:00 PM)  

Dont give up dealing with itp for the last 20 years, i know that everyone is different and not every drug works...i also know that one can live with a count under 10,without spontaneously bleeding, my husband is testament to life and enjoy your daughter,there are many advances in itp treatments that may help your daughter...regards cathy

Craig and Bethany  – (2/16/2009 04:37:00 PM)  

I am on the edge of my seat waiting to know the rest of your story. One of my little ones has a congenital cataract. Your journey really resonates with me.

Jennifer  – (2/16/2009 10:25:00 PM)  

This is so hard to read! I'm crying for the 8-year-old boy and his family! :-(...

Kaye  – (2/17/2009 08:13:00 AM)  

My heart is breaking...for your family and all other families that must go through similar experiences. I have no words for how the bottom picture captured my heart.

Anonymous –   – (2/17/2009 11:50:00 AM)  

My best energy goes out to you're little Samantha and you and your family too. Thinking of you and praying for you so hard...

Anonymous –   – (2/17/2009 08:09:00 PM)  

Oh, my heart is breaking for you. Please know that I will be praying for Samantha, you and your family! I just happened to come across your blog and this story. I can relate to what you're going through since my daughter was diagnosed with a blood disorder called auto-immune neutropenia at 9-months old. She's 2-1/2 and still has it. Even through this time, the Lord has given me peace. You are in my prayers sweet mom. Thank you for sharing your story.

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