Friday, July 16, 2010

Life is a Rollercoaster...

And sometimes I just want to get off because I'm feeling sick.

Yesterday had highlights and lowlights and I was exhausted. The morning started at 7:15 AM heading to the hospital in rush hour traffic for a CT scan, Echocardiagram, and clinic visit. William was fasting for the CT scan. We arrived at the Radiology check-in on time and were then told that the CT scanner was down and we would have to go to another hospital. Thankfully it was only about 30 blocks away, but again, it was rush hour and downtown. When we arrived, parking was a breeze thanks to our new handicap placard! (the little joys in life!) But, by the time we got there, we were already starting to run late for our day of appointments scheduled back to back and I had a little boy who was throwing a fit about the contrast dye he was having to drink. The staff at Sutter General was amazing. Really amazing! They got on the phone with Sutter Memorial and tried to figure out possible scenarios for rescheduling our appointments (not wanting William to fast longer than needful), ran around trying to juggle their schedule to get William in ASAP and eventually ended up freeing up another scanner. During William's fit, they brought out the supervisor, Tim, to assure me they would get William in and helped me coax William through the drinking and tell him stories. A nurse also came and sat with us and tried to distract William with a funny game. Usually after drinking the dye, you have to wait 45 min. It took William nearly 20 minutes to drink it, we waited 5 more and they whisked him in for his scan since we had to hurry back to the other hospital for the ECHO and clinic appt. They even promised to have the scan results sent over to our oncologists within 2 hours so we could possibly see the results before we left the office.

The significance of the CT scan was to see how significantly the tumor has shrunk. The Echocardiagram was to observe his heart function. His chemo can affect his heart function long term and it will be monitored closely throughout treatment and then continue throughout his life. We have been anxious to see how the tumor has responded. The doctors have seemed optimistic because they can no longer feel it from the outside.

As we were leaving the clinic, the the scan results arrived. Dr. Yim let us look over his shoulder as he took a first peek. I saw the original scan and new scan side by side. It is amazing how big the tumor was. The cross section view showed the tumor taking up more than half his abdomen. The new scan showed some significant shrinkage. I felt my spirits rise, desperately hoping to have something hopeful to boost our anxiety. Dr. Yim commented, "It is still quite large, but it has shrunk a little." I had no idea how to read into that. I responded, "But is this amount of shrinkage typical or within the range of expectation?" Dr. Yim is a brillant doctor, but a man of few words with a very heavy Asian accent. (maybe Korean?) He answered, "I would have liked for it to be smaller, but we'll talk more next week when we sit down for a formal discussion." My heart sank. It really sank. And I'm fighting off the emotions all over again just writing it down.

I know he hadn't studied the scans yet. I was seeing them as he did, but I heard his first impression. I left the office trying to hide the tears from William and frustrated. I'm frustrated that we never get any good results from the big tests. I just want some little nugget that I can cling to for some real hope---not something that I cling to because no one has an answer of whether that fact is a good indicator or bad indicator.

I suppose this is how real faith is tested and strengthened. I just wish it didn't have to be so hard and painful. But if it wasn't, how strong would any of us really be in the end? This all goes back to what I mentioned the other day about taking one day at a time. William is happy today and feels good. He takes one day at a time because he doesn't know how to take in the whole picture. I am grateful and draw strength from that. I need to take a step back and focus on each day as it comes. (I think I'll need that reminder over and over again!) But some days I also just need to empty out the tears and emotions so I have room in my brain and heart to just take deep breaths. Then I'll pick up the pieces and put them back together in some stronger formation so I can face whatever may lie ahead.

We are going to have a great weekend with William. He is feeling good, his counts are up, and it's the last weekend he'll be feeling good before all his brothers come home. Last night we kicked off the partying with a trip to the Drive In movies. William said last night, "This is the best night ever in my whole life!" I'm glad he's easy to please!

7 comments:

  1. Julie, you are in my constant thoughts and prayers. You are amazing. I hope you know how much I love you and your sweet family. You're right about growing through exercising faith. I remember being 18 years old and having a particular trial I was facing. I remember talking to my mom, telling her in frustration that if I just knew the outcome of my situation, I could deal with the challenge of it. If I just knew how things were going to work out, I could be strong with everything else that came along with the trial. Then, I went to bed. When I woke up the next morning, a letter from my mom was under my bedroom door. In her letter, she explained that Abraham must have had similar feelings when he was asked to sacrifice his son, Isaac. Had he known the eventual outcome, however, he would have had no opportunity to prove his strength and faith to Heavenly Father. Truly, it would have been no trial at all, had he known the end result. After enduring the trial and proving himself, Abraham was compensated and rewarded greatly for his faith, strength, and ability to keep his eye on Jesus Christ. Julie, you are in that same position and are showing that same faith, strength, and singleness of heart. I know that you also will be compensated and rewarded for what you are enduring. I hope you know how many of us are laughing and crying with you through this trial. You will see purpose in it all, though it's so difficult right now. Give William a hug for me!
    Love,
    Julie Young

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  2. Thanks, Julie. When he's all better, William really wants to go to Texas to see where he was born! He definitely has that Texas Pride!

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  3. Dear Julie:

    I hope you don't mind, but when you accepted me as your "friend" on FB, I went to your profile and saw your blog page listed. I was shocked when I began to read your blog. And then...in an instant..I realized why I must have felt impressed to "find" you on FB after all these years! Believe it or not, my niece, Natalie, was diagnosed with neuroblastoma, Stage IV, with less than a 10% chance of survival. In fact, every single doctor (and test), for the first year, said she would not survive. Well guess what? She's 18 years old now...and heading to USC in the fall!! Natalie was diagnosed at age 2.5 yrs. Her first many months of chemo failed her. Then, they tried an "experimental" treatment (which is now standard protocol for neuroblastoma, but wasn't at the time) and it worked! She went through a stem cell transplant at the end, with good results, obviously. (Sadly, my sister's husband, and Natalie's father, was diagnosed with cancer during this time and did not survive. My sister often feels he gave his life so my niece, their only daughter, could survive; but that's another story!)

    I wanted to write this so maybe Nattie's story will be the "ray of hope" that can pull you through the next few days or week! I remember vividly only living one day at a time. No one really understands it-- or what it's like to have a child so ill--unless one has lived it. We have a very close family. And Natalie was like my child in many ways. So we lived it, and survived it, together.

    I would be more than happy to talk to you, if you'd like. And I know my sister, Nancy, would be more than happy to chat with you and share her experiences with you, although MUCH has changed in the years since Natalie was sick...and for the better, thank goodness! (Nancy is out of the area on vacation right now, but will be back next week.)

    Please know you can contact me at any time if you'd like. But also--please do not feel any pressure to contact me! I just wanted to leave an open invitation. My personal email: jstoeckert@gmail.com.

    My love and heartfelt prayers are with you and William (and your whole family) at this time, Julie! I will share with my own sister and family the news of William so more prayers can be said on his behalf!!

    Warmly,
    Jan Stoeckert

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  4. It was great to run into you yesterday! Thanks for the update. It looks like William won with the drive-in's after all! ;) But with a comment like that it looks like maybe the heat was worth it!

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  5. julie i love you so so dearly! i'm praying for your continued strength and endurance. i'm so grateful and proud to be your cousin. here's a quote by James E. Faust i love:

    "The Divine Shepherd has a message of hope, strength, and deliverance for all. If there were no night, we would not appreciate the day, nor could we see the stars and the vastness of the heavens. We must partake of the bitter with the sweet. There is a divine purpose in the adversities we encounter every day. They prepare, they purge, they purify, and thus they bless."
    "Refined in Our Trials," Ensign, Feb. 2006, 7

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  6. Maybe there's a little picture, a big picture, and the biggest picture. 2 out of 3 ain't bad! Love, Dad

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  7. Randy and ValerieJuly 18, 2010 at 10:35 PM

    Julie and Ryan,

    We think of you and William every day. Our hearts are with you. We wish we could do more. Since you are splitting time -- if one of you is home and wants some company or wants to talk, you are welcome here anytime.

    Valerie & Randy

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