Tuesday, February 1, 2011

ONE YEAR!

One year ago today. One year. Wow. I can remember this day last year so vividly. There was a pit in my stomach all day long. I had no idea why. I remember doing some shopping, and I had left my wallet at home. I was on a time schedule and I felt rushed having to go back and forth, and that pit just wouldn't go away. The few days before I had already noticed Spencer's googly eyes and I knew we had a doctors appointment that day and maybe that is why I was feeling anxious. I picked Spence up from school that day and we had straight over to the doctors appointment. I cannot remember what was going on in my mind. I honestly do not think I was terrified, but I just knew something was not right. We usually do not have to wait long before seeing our doctor, but today was different. I think we waited over an hour. I remember feeling anxious, like I could not catch my breath. This doctors appointment had been set up week before as a follow up on the headaches he had been having. In the weeks up to this appointment they had gotten worse. He had these migraines that made him scream. Totally not normal. I am feeling sick just writing this. As soon as we got into the room and our doctor saw his eyes, she looked at me seriously and said "you need to go to Primary Children's Emergency Department as soon as possible." I took a deep breath and I think my life never stopped moving. I called Nate and told him and he was just getting home. I dropped the other kids off and Spence and I took off to Primary Childrens. I had only been there one other time before and so the moment felt so ominous. I stopped at Carls Jr. on our way there because it is one of Spencer's favorite places to eat. I had no idea how long we would be at the hospital. We sat in the waiting room and so many thoughts were going through my head but I was not freaking out. It was kind of a weird feeling, and so not like me. I freak out about everything related to my children, but there was an underlying peace that night. When they finally called us back things got more real. It was not too hard to wait for the CT scan but it was hard to wait for the results after the CT scan. I kept going over scenarios in my head. What would I do if they told me has a tumor? but then I would tell myself, that I was overreacting. I don't remember what I thought they were going to tell me but our lives changed that night. The ER doctor came in and showed me the film from the scans. I had never been taught to read a scan film but that tumor was obvious. That is when my mind started to spin. I did not realize that there were "layers" to the scans and I thought, "is this in his brain?" She then told us that it was not in his brain but looked like it was his parapharangeal space, and it looked possibly like what they call rhabdomyosarcoma. When I heard this word it all kind of slurred into nonsense. I was not quite sure how to pronounce it or what it meant. I didn't really process it. I just heard tumor. I told Spence that he had a big ball of poison and we had to get it out. Funny because at that point, cancer had not entered my mind. I kept thinking maybe we could just remove this tumor. I called Nate and that is when the emotions began. He was not able to speak, he was crying and questioning and I just kept going. From those first moments I did not break down. I went into survival mode. All I could focus on was fixing this problem, getting him better. I remember walking out the doors calling family and friends and letting them know. Little did I know how much I was going to need these great people in my life over this next year. I went home to my sobbing husband. I don't think I had broken down yet. Survival. Survival. I called our Bishop from our church and he came and gave Spencer a blessing (a special priesthood prayer). He blessed him with healing. At that moment I was filled with peace. I knew that I would make it to the next day. The ER doctors had set up appointments with the ENT (Ear Nose Throat) doctor, and the Oncologist. I have to say that even though she referred us to the Oncologist the whole cancer thing had still not settled in my mind. When we met Dr. Grimmer our life really changed. He had not seen the scans from the night before and said he would look at them. Spence had been having bloody noses so he cauterized his nose. He told us he would be right back. The whole atmosphere changed when he walked back into the room. He, and two other doctor came in and the room was "grim". He said he looked at the scan and even without biopsy he was able to diagnose him with RHABDOMYOSARCOMA. So scary. He said he would have to biopsy to diagnose the type of rhabdo. I don't know why but even at that moment I kept thinking, maybe it is benign. There is no such thing as benign rhabdo, but what did I know back then. We headed straight to scans. That is where my breakdown began. As we sat there for hours waiting for our sweet little boy to have all of these scary scans I put my head on my Nate and just cried. I think this may have been the first cry for me. This was real. Cancer? Cancer. I had a 5 year old daughter and a 9 month old baby at home. How was I supposed to do this? I was Spencer's 2nd grade class room mom. I had the Valentine's Day party in a couple of weeks. I was hosting Bunco at my house, I had a million other things I was obligated to. In those first moments I canceled everything else in my life. It was kind of an exhilerating moment. These are all things that were never blogged because I started the blog on February 4th during his biopsy. I have the first journal entry that I will share with you tomorrow. I cannot believe that we are here. That our last inpatient chemo coincidentally lands on our one year mark. I cannot believe that we are here. There have been many times along the way that I was not quite sure that Spencer would make it through. Many, many, many hours have been spent at this hospital, in this unit. Many friends have been made, many tears have been shed. Many prayers, many blessings. One full year. One year of hell. One year of priority changes. One year of blessings. One year that will change our lives forever. Thank you for being a part of our crazy year.

5 comments:

  1. Thank you for sharing the last years experiences with us. It has helped keep things in prospective for me. We think/pray about your family often. Take care

    ReplyDelete
  2. I remember one year ago today, Spencer showing me his "googly" eye when I was volunteering in Mr. Davis's class. Never in a million years did I expect to hear that he had cancer. On the bright side he also told me that he was so smart (especially at math) that he could finish his homework before his dad came home from work. :) We love your family and can't wait for Spencer to be back at school. He is missed.

    ReplyDelete
  3. You are such a strong person. I haven't been able to write about the day we found out about my son's cancer. I am just not ready to go there. I did scribble the details down though, as if I could ever forget. Interesting how Spencer's story unfolded. My son's began very similarly. Bless you Gooches

    ReplyDelete
  4. I'm so happy for you guys. I've followed your blog from day one and have laughed, cried, and smiled while reading your posts. You're an amazing writer and your family's experience has had a huge affect on my family and I'm sure many others. Thank you for being you. I look forward to reading more positive posts about Spencer's recovery and I'm SO HAPPY for that adorable boy. He has an amazing life ahead of him - I just know it - and he deserves every minute of it!

    ReplyDelete
  5. I am just finding your blog now but I think we have met briefly before. I read this post with a box of tissue. Thank you for sharing it and for being so open and honest. You are a beautiful writer. I am sending our love and prayers your way.
    Amanda Flamm (millie's mom)

    ReplyDelete