Cancer Story

**For those of you who care to skip this, feel free. Many family members reading already know the story and may or may not want to revisit it. :)

This is something I've wanted to write for awhile. Not for anyone else to read necessarily, but for me to have. Each year that passes I feel like I just forget a little bit more. It's time to get it written before it's gone!

A little background... My dad had accepted a job here in Denver somewhere between the end of 1991 and beginning of 1992. We (they) uprooted us and made the best decision EVER to move us here. I can say that now, knowing where we've been, what has gone on, and what my future holds. Then, however, was a different story. We all had a rough time with it (in our own little ways) and ALL wanted to move back to California (Redding), which got progressively worse the older we got. My dad knew though, that this is where God had us be and my amazing mom stood by his side, despite not knowing anyone and leaving all she knew behind. We got plugged into a church and met some great friends who remain friends to this day. The Palmerie's were truly a God-send in a time of need and we enjoy seeing them when my parents are here visiting. :)

Fast forward to Memorial Day weekend 1993. I was 10. We were in Buena Vista, CO camping with the Palmerie's. They have 2 kids, 1 boy and 1 girl, who are around our ages so we all had plenty to do! Fishing, hiking, creek exploring, etc... It was SO fun! I still have fond memories of that trip! The evening we got back from camping, we had all showered and got cleaned up and the laundry was quickly getting washed, folded, and put away. I specifically remember where I was sitting on the couch and folded my arms over my bent knees (so basically my knees were at my chest and my arms were wrapped around them) and remember feeling that my right arm was HARD. I still remember that feeling to this day--it felt as hard as my elbow did/does but it was in the middle of my upper arm. So, I told my mom to feel it. She did and motioned to my dad to come into the other room. After hearing her tell the story (many times), I know that she had called him into the other room to say that she knew I had a bone tumor. My dad essentially said it was "hog-wash" and that we needed to get it checked out before jumping to major conclusions--especially one like that. So, that NIGHT we headed over to our family dr's house and he looked at it. He said it "looked" like muscular distrophy and wanted to see us the next day in the office. So, bright and early we were up and being seen in the office by him as well as another doc who knew a little more about MD. That dr said is definitely wasn't MD, but wasn't sure exactly what it was because there was more than one thing it "could" be. So, we were referred to another doc to look at it. He didn't know either... So, over the course of a few days, we ended up seeing SIX different doctors. The 6th one took (more) x-rays and I remember the small room we were waiting in for him to come tell us his opinion. It seemed like a long time that we waited, but I was only 10 so it could have been shorter than it actually felt. The dr came in, called my mom into a different, smaller room, and said "Your daughter has a bone tumor and is probably going to die" and walked out. My mom was faced with having to go back in to the room the 3 of us kids were in, manage to keep her composure, and get us all out of the dr's office. My dad wasn't there because he was still new at his job and couldn't just "get the time off". This dr had given us a referral to Dr. Hahn, an orthopedic surgeon, for a biopsy. On 1 side of the paper was his name as well as directions to his office (remember, this is before cell phones and GPS!) and on the backside it said: Malignant bone tumor. I had picked up the paper and flipped it over as we were driving to Dr. Hahn's office. I remember reading "bone tumor" and even what those words looked like on that tan colored paper. Again, this is from my mom's re-telling of the story because I don't remember saying this but, apparently I read the paper and as my eyes welled up with tears, said "mommy, am I going to die?". My mom, with tears welling up in her eyes, said "No honey. They're not sure what's going on but it's a possibility you have a bone tumor so they just want to check and make sure". Being a mom now, I would have just LOST it. How she kept her composure (in front of me) is beyond me.

So, Dr. Hahn scheduled a biopsy and everything went fine with the surgery. I went home a few days later and we all anxiously waited for the news: benign or malignant. I remember staying home with my Auntie Wendi while both my mom and dad went to a "meeting". Little did I know... This meeting was with a pediatric oncologist. Of course I didn't know what those words meant either! ha! I knew they were going to talk about me and what was wrong with me. They came home and I can still remember where I had walked to greet them and FINALLY get to ask what was wrong with me. This timeline was all within about 2 weeks or so from the time I felt the lump until now--pretty fast but incredibly slow without having any answers. I remember asking "what's wrong with me?" in a slightly excited tone, hoping they'd have some magical answer. They had an answer, but it wasn't magical... My mom looked at me as my dad cried and said, "you do have a tumor and it malignant." I have no clue what my initial reaction was. It really didn't register with me WHAT that actually meant. However, she started talking about surgeries, having a broviac (permanent IV that's now been replaced with a PICC line), chemo, etc... I remember crying. My whole life had changed and I didn't even know where to start. It was AWFUL.

At that meeting, my parents met Dr. Cullen, who would be my pediatric oncologist. Dr. Cullen explained that I had a rapidly growing stage 2-3 malignant bone tumor called Ewings Sarcoma. He also said that there was less than a 15% chance I'd survive this disease because, with the current treatment, there were no survivors within 5 years of diagnosis. The situation was grim and offered little hope. He then offered a suggestion that would later save my life: He had come up with a new protocol of treatment with chemotherapy (no radiation) and was hopeful it was going to work, but it was still VERY experimental. There was currently ONE other patient in this treatment, and she had only had 2-3 treatments as it was. His pose to my parents was: "I'd like to try this treatment on her and really feel we have nothing to loose. She's going to die if we treat it the old way and she has a CHANCE at life if we try this." My parents, with their tear-stained faces and swollen eyes, agreed. Chemo was to start immediately.

During this time, they also met with my orthopedic surgeon, Dr. Wilkins, to decide 1), if surgery was necessary and 2), when it was safe to remove the tumor. Dr. Wilkins was also a lifesaver. He is known all around the globe as one of the top orthopedic surgeons, ever. He was a colleague of Dr. Hahn's (the original Dr. that did the biopsy), which is the ONLY way we would have been able to ever see him. The original MRI showed that the tumor had started inside the bone and had completely encompassed my right humorous and the main nerve that ran right along side it. An immediate surgery was out of the question because the tumor was too large and the cells could EASILY spread to my lungs, which would be "the end". Dr. Wilkins, along with Dr. Cullen, decided 6 months of chemo would hopefully be enough to shrink the tumor and then safely remove it.

I have to say that, even then, the faith my parents had in God far surpassed anything I could imagine. They knew that He was the only one who could save me. As much trust as they had in the doctors, they relied on the only promise they had: God gives us a time to live and a time to die. Their faith brought them thru this. As much as they didn't want to let go, they came to realize that they weren't in control in the first place. I'm sure there were many times of questioning God: "Why? Who? How? Huh?" As a parent, I hope to NEVER have to be in their shoes. At some point thru this, I remember hearing my mom say: "You know, we always think things like this will only happen to 'someone else'. We are that 'someone else'." It wasn't in a "ho-hum poor me" way though. It was a reality check. In life, this is so true. "Oh, that won't happen to me. Only to someone else". Some person WILL be that "someone else". However, on that same token, we're all "someone else's". I believe God allows different things to happen to different people. I do NOT think God "makes" things happen. He ALLOWS them to happen, knowing that He's filled us and one's around us with the faith to perservere thru them. Only once we're thru them do we see, and are able to share, the testimony of the miracle God did for us. That testimony builds faith in us and others around us. Faith can move mountains. Only now do I realize what God has done for me and even now, 18 years later, I cannot say I FULLY realize the incredible work He's done. This year-long journey has shaped me to be who I am today, both positive and negative. I'm not done with it yet. Yes, in the physical I am, but emotionally I'm not.

So, within a few days, I was admitted to the hospital to have them put in my Broviac (remember: permanent IV) and start my 1st round of chemo. The first 3 treatments were back to back and then spread out to once a month after that. The surgery for my Broviac was miserable. It's essentially a plastic tube that fed into a main artery in my heart so there was an incision made in the crease of my neck to feed it down. The other end came out of the middle of my chest at the nipple line. I remember the pain. The dressing had to be changed every 2 days, unless it got wet. Then it had to be changed immediately. Oh the tears I cried in that hospital room after that surgery. It hurt SO bad! The 1st round of chemo was started the following day and lasted for 3 days. I think there was 1-2 drugs each day. I had 5 IV drugs that I had to take and 1 drug that I took at home thru my Broviac nightly. The 1st day of drugs wasn't too bad. I remember just feeling tired. It made my eyes feel funny--sorta like when you take an allergy pill or cold medicine that makes you drowsy. I couldn't really focus on anything physically and was too tired emotionally to care. Just 3 weeks ago, I had been camping with some of our only friends in our new "life" here and was a happy, healthy (or so we thought...), 10 year old. My world had been turned upside down. This is where our friends, the Palmerie's, played such an important role. Every time I was in the hospital (which was too numerous to count...), they watched (and homeschooled) my younger siblings, Ashely and Garrett, who's lives also had been abruptly turned upside down. I stayed in the hospital for just under a week and began a small recovery before my 2nd treatment would start, about 3 days later. I was weak, tired, and really just didn't understand the severity of what was going on. The remaining 11 treatments were to be done in the dr's office, which was a much more comfortable setting than the hospital!

After the 3rd treatment is when my hair really started falling out. I had accepted that it would and was okay with it. I didn't love it, but it's one of the side-effects and if loosing my hair for a year meant I could live, then so be it! I remember sitting on the couch and my mom brushing my hair. This wasn't an every day occurrence but once they knew it had started falling out, they brushed it so that I wouldn't see exactly how much was actually coming out. The hair brush would be FULL of hair after just a few brushes. It's almost surreal how it just "falls out" like that. It didn't hurt but just came out. I remember running my fingers thru my hair and getting a handful of it. It didn't bother me. I chose to laugh about it, knowing it was "just one of those things". I could have let it affect me but what good would that do? None. It was going to happen no matter what so I made the best of it. Plus, God invented hats for a reason. ;) I never wore a wig because I didn't want to hide the fact that I was bald. And really, in all reality, who do you know that has a full head of hair but no eye brows, eye lashes, arm hair, leg hair, etc... ? I don't know anyone! Plus, Sinead O'Connor made bald beautiful!

(This was actually taken in the isle of Walmart! about 8 months in to treatment)