Ending the Beginning...

We spent the next few days preparing for Christmas and trying to get settled. I still hadn’t been able to wash my hair. It was pretty gross and matted from being shaved in one spot and then drenched in betadine. I had staples going all along the side of my head that couldn’t get wet so showering in itself was a challenge. My husband helped me to clean up my incision as much as he could. I recruited my mom’s help to try and brush the huge knots and clumps that were making my hair stick together. Thank goodness for tangle removing spray! It proved to be quite the mess, but I felt a little bit more human and clean again. 

I continued to recover well, but nothing really new was happening. Until a close family friend had put us in touch with the Tug McGraw Foundation. I spoke to the amazing woman who is the President and she was so reassuring and gave me so much hope.  The surgeon who put in my shunt had set up an appointment for us with a neurosurgeon in our new city, but they couldn’t see me for a consultation until the end of January. While speaking with the foundation President, she agreed with me that surely this wouldn’t do, and the next day, which happened to be Christmas Eve, I received a call from a neuro-oncologist that the foundation works with regularly. He was on his way to visit family but took the time to contact me on a Holiday to find out what was going on and what needed to be done. Yet again, a total God thing. He determined that before any treatment could be done, I needed a biopsy. We needed to know what we were dealing with. So he told me a neurosurgeon he worked with would be calling me to discuss it further. I was feeling quite happy that something was finally being done. We were getting somewhere and getting information.  That call helped to give me a bit of peace and I was able to actually enjoy the day knowing something was going to happen soon.

Unfortunately, Christmas Day proved to be more difficult. I had myself convinced that it was my last Christmas.  I did my best to keep a smile on my face for the boys, but inside, all I could do was think that they would be celebrating without me next year. One less stocking hung, one empty seat at the dinner table, one less face on our family Christmas picture.  I’ve always loved Christmas. My husband and I even had a Winter/Christmas themed wedding.  Christmas was even better after the boys were born.  And here I was for the first time ever, wishing it would just be over.

Not much happened over the next few days. My Mom and I were at the grocery store when I got the call from the Neurosurgeon that we had been waiting for. I was shocked at how much he put me at ease. He asked me questions about my family and myself before getting into the medical and tumor part. Not what I was used to since all this started. We talked for probably about 10 minutes, and then he asked me how soon we could be there. I asked him what he had in mind and he said that he had an opening on January 7^th to do my biopsy. I told him I’d take it and called my husband right away. I knew that it was God again. I was scheduled for a consultation at the end of the month locally, but with a single phone call, I was scheduled for an actual biopsy in less than a week! 

On January 6, the truck was packed. Myself, along with my husband and my Dad, were North Carolina bound. It was a long drive, but I kind of enjoyed the time to just think and pray. That’s pretty much all I did, besides an occasional nap here and there. We made it to the hotel that afternoon and settled in for the evening. I had to be at the hospital early the next morning to register and be admitted so we brought dinner in and just tried to relax.  I’m not sure how well any of us slept that night, but before I knew it, I had been admitted and my doctors were by my side telling me about the “cocktail” they were going to give me so that they could screw a Halo into my head. From what I could gather, it helped with accuracy while they were actually doing the biopsy. One doctor told me I had nothing to worry about because he had stayed at the Holiday Inn last night…yes, nice for a laugh, but not very comforting when they are sticking something in your brain! I really don’t remember anything after they gave me the cocktail. There is one point where I very foggily recall asking a nurse when we were going to do the biopsy and she responded that’s what they were doing.  After that, I remember being in my room, eating dinner. The halo was off, and I couldn’t really recall any other of the day’s events, so it was time to call it a night.

The next morning, the doctor came in to let us know that the preliminary testing showed that I had a germ cell tumor, which normally responded very well to radiation. But nothing had been confirmed at that point so we still had to wait for the official results of the test.  Things continued to go very well so I was discharged and we headed for home.

The next few days we spent waiting.  Waiting for the phone call that would tell us what were up against. The day they had promised the results, my husband was working, but he and I spent most of our time texting back and forth wondering if either one of us had heard anything.  My Mom and I ran to the store that afternoon and as we unloaded little G and headed inside we were surprised to find my husband standing in the kitchen. I could tell by the look on his face something was wrong.  Really wrong.  He choked back tears as he told me that he had gotten the call and it wasn’t good. I remember feeling like I was either going to pass out or throw up. He explained that my type of tumor was a Glioblastoma. It was a stage 4, which was the worst, and it was also inoperable because of its placement in the center of my brain. The worst part of it all was when I heard him say the words “six months”. Six months was my prognosis. They had to be joking.  There is no way this was happening. Once again all I could think about was my guys. It wasn’t fair, and I started to get angry. My Dad came home and my husband’s parents came over and we all just sat in the living room and cried together. Our preacher came by and thank goodness he did. We all took time to pray and he reminded us that God had a plan and that this was just another valley that we were going through. He and our family took turns praying over me and after that time, I really did feel better.  Still very scared, but reassured that God was going to handle all this.  I didn't know how, but I knew that He would.

That afternoon, while we were all still together, I made everyone agree that today was our day to get it all out, be sad, angry, whatever we needed to be. From that point on, it was all going to be positive.  I knew I wouldn’t be able to handle another day like this. Emotionally I couldn’t.  So the sadness ended here. It was time to make a plan and start to get rid of this thing.

Our next step was to head back to North Carolina to see what our options for treatment would be. My husband, my Dad and my husband’s Dad all went along and I think we would all agree it was one of the longest days ever. We met with doctors, nurses, PA’s, students, social workers, child psychologists, and every other person you can think of. When we had finally narrowed down a treatment plan, they helped us to find an oncologist locally so that I could be at home with my boys while still following their aggressive treatment plan. The doctor they contacted was and still is amazing. He agreed to follow their plan for my treatment and I am so thankful for him. Upon returning home, I started 6 weeks of radiation, as well as a chemo pill that I took daily at home and an IV chemo that is administered every 2 weeks at my oncologist’s office.

Things started happening so fast and we stared to meet some amazing people. I cannot say enough wonderful things about the care we have received from my Oncology and Radiation teams. The doctors, nurses and techs were so caring. When you are going thru something like this, it’s so reassuring to know that there are people who genuinely care. That you’re not just another chart number. That you’re a person and they are doing everything they can to help you and take care of you. These are the type of people I have been blessed to have heading up my treatment.

I remember the day we brought Big G along to one of my radiation appointments. The crew took the time to show him the radiation machine, the computers, how my mask fit and hooked to the table so my head didn't move, they even let him talk to me over the speaker while I was having my treatment.  Hearing his sweet voice say “you’re all done, Mom” was the coolest thing ever! I really think it helped to put his mind at ease. He had so many questions and being able to actually see what I was doing was good for him. Of course the fact that all the ladies made a fuss over him helped a little too. I must admit that when the 6 weeks were over, I was a little sad.  I had seen these wonderful people every morning for almost 2 months.  We had brought them breakfast, cookies, gotten to know about their lives and families and they knew about ours. It was like I was leaving great friends. Luckily, we still get to see them during our check-ups and IV chemo visits. They will always hold a special place in my heart.

As word of our situation spread, there were so many people wanting to reach out and help. I must admit, that it was not only a scary time emotionally, but also financially.  My husband had missed so much work. And we had met our health insurance deductible twice within the past 3 months. We hadn’t even come close to meeting it in the year before. But with my shunt surgery in December, and then my biopsy and treatments that stared in January, the cost was really stating to add up. We called the mail order pharmacy to get information about the chemo pill I would be taking, and they informed us that even with my insurance, the cost would be well over $1000 per month. I could see the veins in my husbands forehead begin to show. We knew we had no choice, and started to plan out ways to make it work. Once the meds were ordered, my husband received a call from the pharmacy to verify all of our information. The girl on the line politely asked him how he would be paying for the prescription.  Of course my husband asked for the amount that was due. The look on his face when he asked her to repeat the amount was priceless! The cost was just over $100!! Really?? How could this be?? She confirmed that with our insurance, this was the correct cost. My husband happily paid over the phone and my new chemo was on its way. I knew God had taken care of it again. His hand was showing up in every aspect of this and I just knew it was Him.

Over the next few weeks, our family and friends started to organize ways to help our family.  Our Aunt and Cousin started a Facebook group for us and started collecting items to have a yard sale and items to raffle to raise money for my treatment and medical bills. Some very close family friends did the same. Our previous church had taken up a love offering and presented it to us. I started to receive cards and checks in the mail from people I had never met letting me know they were praying for us. A dear friend also started a prayer group specifically for us. Every day there is at least one person praying and fasting for us from this group. I was and still am overwhelmed when I think about how blessed we have been.

Don’t get me wrong when I say this, because we appreciate everything and everyone who has been a part of this, but two situations have really touched my heart. The first is from a sweet little guy, who with his moms help, made arcade type games and set them up in his front yard for his friends to come play. His original plan was to raise money for a local animal shelter, but when he heard our story, he decided he wanted to give half of what he had raised to our family. There is nothing more humbling as standing there, as a child looks you in the eye and hands you money to help your family. The smile on his face was something I will never forget. All I could do was stand there and cry. At first I told his Grandma I couldn’t accept it, but she insisted, telling me that this is what he wanted. I have no idea how many times I hugged him but it must have been a lot, because when he was leaving, I asked if I could give him one more and he said “no”. I guess he got the idea of how much we appreciated it.

The second was a package of cards I received from our previous church. They were all hand-made cards from the children’s group. As I sat and read each one, my eyes filled with tears. The thoughts and prayers they included were just amazing. I wanted to just read them over and over. And I did. In fact, I still have every one. One in particular has always stuck out in my mind. Beautiful drawing on the front, and when you opened to the inside, in big letters, was the phrase “Long Live Katie.” I didn’t know whether to cry harder or laugh a little! As I read on, I realized our cousin’s daughter had made the card. I called her mom and told her how sweet it was right away.  As I continued reading through all the cards, I got to the bottom of the bag. It was filled with coins and cash. They had been collecting their offerings and saving it for us. Once again my eyes filled with tears. How were we ever going to repay all these people? Not only for their monetary gifts, but also for the prayers, love and support they have shown our family.