The Tough Early Days (warning, this post may be hard to read, especially for my family)

I just finished watching "My Sister's Keeper" I cried. It was a tough watch, as it brought back so many memories. Ever since the movie came out on DVD, I've see-sawed back and forth about watching it. I knew it would be a good movie, but didn't know if I would personally be able to handle it. I don't like crying over fictional stories. I've been meaning to record my memories, and figured this would be a good time to do so, since they're right at the surface now.

I remember my baby sister being not like herself. She was complaining all the time of her tummy hurting, and wanted to sleep all day long. My mom kept taking her to the Dr, wondering if her pneumonia had come back, or something else was wrong. They said her lungs sounded clear, and couldn't figure it out. 10 days after she first started acting weird, she was going to the Dr yet again, as it was obvious something wasn't right. As we got her dressed, I noticed her breathing didn't look right. Her ribs looked odd as she breathed. I still can't think of how to describe it, but I remember thinking something was terribly wrong.

Several hours later, I got the dreaded phone call. My mom called to tell me they were taking my baby sister to the children's hospital. She needed me to go pick up the van from the dr's office. Her mom was on the way to pick me up to take me out there to get it. I asked if they (the Drs) had figured it out. She said they were pretty sure, they thought she had cancer. She had to go, I had to go, so we hung up, and I cried. I held it together long enough to get to my bed, then sat there, and cried. Two of my siblings had heard the phone ring, and, since we were all waiting on news of the youngest, came to see if that was it. I don't think I will ever forget the looks on their faces as they realised that I was crying. Their faces fell, their shoulders drooped, it looked like they'd just taken the weight of the world on their shoulders. In that moment, I knew I had to be the strong one for everyone. My oldest brother looked like the world had just come to an end. I told them what Mom had said, we all hugged and cried for a minute, then Grandma was there, and I had to go.

Dear Grandma! I still smile through my tears thinking of her response. I got in her car, and she said, "Well, all your mother said was that I had to come get you so you could get the car from the Drs office. What do they think it is?" I started a fresh round of tears. "Crying isn't going to help anything. What is it?" Yeah, if you don't know my grandma, you can't tell that that was her way of saying "It's going to be okay. I wish I could take your tears away and make it all better right now!" I told her they thought cancer, and she kind of grimaced and nodded.

Later that night I had the difficult task of updating my older sister, who had just gotten married. Before I told her what the Dr said, I asked if her husband was around, I knew she'd need him. I also told her to sit down. I remember hearing her burst into tears, and wishing I could be there for her. I then called several others, got the prayer chain started at church, called my husband (who at that point was a dear friend, but not yet even to the point of boyfriend), and another friend, who offered to come over. I accepted the offer, knowing that we all needed some kind of distraction.

The next day we went in to the hospital for a conference with the Drs to have them explain to us all just what was going on, and what was going to be happening. It turned out she did have cancer. High Risk, T-Cell, Acute Lymphoblastic Leukemia (ALL). Her spinal fluid was 75 % leukemia cells, which meant she could be brain damaged from the cancer, and she would definitely need radiation on her brain. Her white blood cell count was horrible - I can't remember at this point whether they were through the roof high, or incredibly low, either way, that added to the high risk. And, she had a massive tumor in her chest cavity, which was putting such pressure on her heart and her lungs, that they could not put her under general anesthesia to hook her up to the dialysis tubes, catheter, and pic line, for fear she wouldn't wake up from it due to the stress on her organs.

I think that the sight of seeing my baby sister lying in that hospital bed, oblivious to all that was going on around her, hooked up to all those machines, is a sight that will never leave me. She was in the Pediatric Intensive Care Unit (PICU) for just over a week before she was able to be moved to a regular room. She was in the hospital from January 12 until the 28th, for her first hospital stay. There were many of them over the next almost 3 years. I stayed with her a couple of nights so that my mom could get a halfway decent sleep at the Ronald McDonald house. The first time I stayed with her, she started thrashing around, and wouldn't calm down. I took her hand and started singing softly to her. After a couple verses of her favorite song, she calmed down, though she hadn't shown any signs of consciousness. It was hard seeing her there, not knowing if she would take her next breath.

It was a long hard few years, but those first couple of weeks were the hardest. As the tumor shrank, she started being more wakeful, started getting a little bit of her pep back. Once she got to the point of playing "Pac World 3", making pacman body slam the ground again and again and again, we were fairly out of the woods for the time being. The Drs were all amazed at the progress she made with the first round of treatments, and we could only give God the glory.

I remember when her hair started falling out, she didn't want to brush it, cause each stroke carried with it great gobs of hair. She was self-conscious, said she looked funny. I told her that I'd rather have her lose all of her hair, and be getting healthy, than to have all of her hair, and not have her. After that she was fine. We've always had a special relationship. I was the one who could get her to eat and drink what she needed to, and was the only one she would let touch her bald head.

After roughly 3 years of treatments, she had a party to celebrate the removal of her port, which signified the end of her cancer. I was on the West Coast by that point, so wasn't able to make it to her party, but did talk to her at that point. I told her I was glad she was done with her chemo, she replied, "I am too! Know why?" When asked why, her response was, "I don't have to wait to eat anymore!"

As I look back, I see the hard things, but I can also see good that came out of those hard years. It helped me to be able to go with my husband to visit the sick in the hospital, because I no longer saw it as a place of death. Those were still real people in those beds, no matter how many machines they were hooked up to. I didn't see that until it was my own sister in the bed hooked up to the machines. It also helped me to see my absolute dependence on God. Knowing that the drs were experimenting to try to help my loved one, but knowing the Great Physician, and that He knew just what she needed, I spent a lot of time in prayer. I have learned the need to see not only the one physically suffering, but, perhaps more importantly, the ones silently suffering as they watch the physical suffering of their loved one, and are pushed (however unintentionally) to the sidelines because their needs are not as visible.

I'll end with the wonderful news that she's still cancer free 3 1/2 years after her celebratory party! She's becoming a beautiful young lady, and I can see the potential for her to become an amazing woman. God has done great things in her life!