We left the hospital with our precious babe, assured that she wasn't going to have a spontaneous internal hemorrhaging problem. Boy, I had sure taken the problems associated with teething and baby constipation for granted until then!
Samantha's platelet count had thankfully climbed up in to the 20,000 range. Still not within the normal rage of 150,000 to 300,000, but safer than the 5,000 mark that she had been at. I hoped beyond hope that the slight increase we saw was an indicator that her ITP was not caused by a bone marrow cancer.
But I was left wondering, if not cancer...what? What caused this potentially fatal problem? I started doing some research, and just generally became probably the most persistent and irritating parent Sammy's doctors had ever encountered. I'm just not the type to sit by while taking the advice of the experts. As a kid, I remember disassembling the little bell on my yellow banana-seat bike because I just had to see how it worked. Once again I found myself having to know...how? why?
ITP can be caused by three different things, I learned:
1. Cancer of the bone marrow, which results in the body not producing enough platelets.
2. A chronic condition where the bone marrow just doesn't work quite adequately. It doesn't produce enough platelets, but the marrow isn't necessarily cancerous. If that were Sammy's case, this would be something she'd live with for the rest of her life (like all other people with chronic ITP). It was a satisfactory explanation for me, but I was left with more questions than answers about the quality of her life. Would she be able to participate in sports? Drive a car? Have a baby?
3. A virus. There is not a particular ITP virus, but a viral infection can sometime confuse the immune system. The immune system fights the virus...but instead of turning itself off when the virus is gone, it turns on the platelets instead. The blood is at war with itself - the white blood cells attacking the platelets. The result is a lowered platelet count. In this case, it's typically a one time life event, and it never happens again.
I had no question about which option I hoped we were dealing with! I prayed and prayed that it was #3...but if it was, it should have responded differently to the treatment she had in the hospital. Maybe since she was so little the treatment just didn't work as quickly? I hoped...
We went in weekly for blood draws. I still found myself parking in the parking lot of that cancer center and thinking, "I can't believe we're here". And that song..."Hold Me Jesus"...it haunted me day and night. It was my constant companion and prayer.
I don't mean to make it sound like I did this myself. My dear, sweet husband was right there too. He'd have loved to stay the night in the hospital with his baby girl, but since I was nursing I stayed with her and he cared for our older kids at home. I don't deny that I was happy for the excuse to stay with her. I couldn't have left her even in the loving and capable arms of her daddy.
We also had lots of visits from Sammy's aunts, uncles, grandparents and our friends. We were surrounded by love and support.
But when you're going through something like that, it's almost like it doesn't matter who's there and who's not (no offense to those of you who were so wonderful). I think that no matter the number of people there, it feels a bit like you're on an island. Only it's not a deserted island. You have lots of company...you know...the fear, the doubt, the nightmares are right there all the time.
At first, it seemed that her platelet count was rising. She made it up to the 20's, then the 30's, then the 40's. But then, I remember a blood draw that was particularly hard to stop the bleeding again. I slumped into my seat holding my baby, and just cried. I knew before the results were back that her numbers would be down. Sure enough. Back down into the 10's again.
The doctor recommended another treatment. It would be an outpatient treatment....just some drugs through and IV. We decided to go for it. But at the back of my mind, all I could think was, "Why didn't it work? They said that if it wasn't cancer, it should have worked. Please, Lord. Please don't take my baby."
We went into the cancer center for Sammy's second treatment. First, there was the torture of trying to get an IV started my squirmy little baby. They tried her arm. Then her other arm. Then her wrist. Then her ankle. Then the called in an IV expert (boy was I pissed off by then), and he placed one IN HER HEAD. They assured me that it was no different than putting it in her arm, but it sure seemed more barbaric to me. I was horrified. He got it placed on the first try though, so I quickly resigned myself to just being relieved that the pokes were over for my little girl. They had to wrap each of her hands with tape to keep her from using her fingers to pull out the IV. Here we are during treatment....as you can see, she's covered with the purple tape from all the various IV attempts:
The treatment itself was uneventful. We sat and sang and cuddled while her IV was hopefully filled with some sort of miracle that would make her all better.
We wouldn't know for another week at the next blood draw...this treatment was not a success either. Weekly tests continued to return disappointing results. Her numbers were just not coming up.
We had to face the very real possibility that our baby girl had cancer.
It was nearly impossible for me to attend church during this time in our lives. It was pointless anyway, I couldn't concentrate on a sermon to save my life. All I could think and pray was "Save her, Lord" and the constant repetitive plea of "Please. Please. I beg of you. Please."
We did go to church once though, because I clearly remember the worship portion of the service. I was standing there holding little Sammy and singing along to the songs, when the worship leader started a new song. The building rose with the voices of the faithful singing "I Surrender All". And my tears started. I had to sit down and just hold my baby and cry...and cry some more.
I just kept thinking "Oh Lord. I can't! I can't give her up! I can't surrender all. I'm so sorry. I know you deserve my trust, but Lord I'm just so scared. I'm sorry I can't surrender her. Please don't make me. Please don't take her."
It was a low point in my walk with the Lord, for sure. I felt like I was letting Him down. I felt like I was letting Sammy down with my weak faith. I even feared divine punishment or something for my inability to "surrender all". I was brought face to face with just how much I trusted...and didn't trust the Lord.
Even so, I wanted to do all I could to help my baby girl. I pored over my Bible looking for some sort of "How to heal" passage. I had read the New Testament, and knew that was I was looking for didn't exist..but maybe I had missed it? I wasn't exactly in the rightest of minds, I realize. I was desperate and terrified.
I did come across James 5:14 though: "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord."
I called the church office to inquire. Sure enough...I made an appointment for our church's elders to come to the house to bless Samantha.
I spent that day cleaning and praying for a miracle. I was also nervous for Samantha. She had justifiably become quite afraid of strangers. No wonder, since practically everyone she encountered stuck her with a needle! I feared that she would just get worked into a panic at the arrival of the elders.
They arrived one by one...I think there were about 5 in all that day. We sat in the living room while we explained Sammy's situation to them, and told them our fears of cancer. They asked what we'd like to pray for specifically. That was easy...peace, comfort, and most of all a miraculous healing. I may not have trusted Him completely, but I did have faith that He could heal her if it was His will.
I sat on the floor with Sammy next to me. The elders and my husband gathered around us, and they all placed their hands on her pale little body. Instead of fear, a peace flooded the room. I closed my eyes to pray, but I couldn't help but sneak a peek to see the expression on Samantha's face. There she was, quiet and still as could be...just looking at all the strange men surrounding her. She didn't show even a hint of fear...just curiosity and peace...even a little grin from time to time as if we were playing a game with her. She sat quietly while they prayed for her and anointed her with oil.
We continued with the weekly blood draws, and we were continually disappointed. Did God have plans for Samantha that we didn't want?
The time had finally come to find out if Sammy had cancer. We had to know. Not just to satisfy our curiosity, but to begin treatments to try and save our little girl's life if necessary.
Would it be necessary? Only time...and a horrifying bone marrow biopsy would tell...
