Thursday, April 26, 2012

Spring Break and Beyond

I know I've been a slacker on the blog and I apologize to all of you faithful followers. I have been working on the blog, but life keeps getting in the way and the hospital wireless is painfully slow to upload pictures.

Spring Break---April 2-9
  • loved a visit from Clark's teacher and her two Newfoundlands
  • enjoyed having my sister, Natalie, for several days to help with the babysitting during the chemo and radiation

  • SO appreciated her help painting the boys bathroom--a project we started a year ago!
  • finished the last 2 days of chemo (Velcade) on Monday and Thursday
  • completed the last of 12 days of radiation on Friday (the 7 am appt. time was beastly)
  • left town directly from radiation to Monterey for the weekend (Bucket List item)
  • LOVED visiting with great friends
    • the boys loved the BB guns, explorations in the woods, playing with the cat
    • Ryan and I loved the good company, gorgeous views, and yummy food
  •  Played at the beach
    • digging holes
    • tide pooling- lots of hermit crabs!
    • testing the chilly waters---sometimes a little more than desired
How many children in this picture? (answer: 6)

  • Monterey Bay Aquarium
    • A special thanks to the father of the twin's school teacher, Jim, and their dear friend, Alex, who both work at the aquarium, for the behind-the-scenes tour
    • The boys are still talking about how much fun they had!
  • Bay Area for Easter
    • wonderful church service
    • lots of fun cousin time with 2 of my siblings and their families
    • delicious food
This is how to jump on the trampoline with a walker!
After Spring Break

The following week I spent catching up on laundry and errands and William went back to school Wednesday through Friday. It was his first time back since November. He lasted the entire day each day (although he arrived ~45 minutes late each day due to his TPN infusions) and had a great time! He really loves being around his peers and feeling normal and they were all so excited to see him.

Then chemo started all over again last Monday. It was the start of round 2 of the Irinotecan/Velcade cocktail. It continues to be outpatient treatment, but we spend 5-6 hours of every day at the hospital (+1 hr travel time/day) during this first week of the cycle. As exhausting as it is to drive back and forth every day and coordinate the schedules of William and my other children, it's much better than staying overnight and running the risk of another bout with bed bugs. (I'm itchy just thinking about it!) Thank you to the wonderful friends who love and care for my boys and deal with my often impromptu schedule!

William is tolerating this chemo well enough, but what does that mean? Chemo stinks and never feels good! But at least most of the side effects are being kept at bay and we're not in the hospital. One side effect of the Velcade is neuropathic pain. William had a little pain last time, but not enough that he wanted pain meds. On Monday, as soon as the infusion ended, his shoulder began to hurt. The pain increased and became quite painful, enough that he wouldn't move it or let anyone touch it. Dilaudid hardly touched the pain. We increased his dose and that helped (and made him sleep more).

He had an x-ray of his shoulder area on Wednesday last week to rule out possibilities outside of chemo side effects. The x-ray revealed a possible abnormality, but nothing definitive. Given his history with relapsed neuroblastoma, they recommended an MRI. After consulting with the radiology oncologist, an MRI was ordered for Monday of this week. His pain decreased throughout the weekend and on Monday, one of his oncologists was skeptical that the MRI would reveal anything significant, attributing the chemo side effects to the pain. I was doubtful. Maybe it's mother's intuition, or maybe I just don't remember what it's like to have a scan with no significant negative results.

Scan Results
  • suspicious lesions indicative of bony disease in the humerus (bone between shoulder to elbow).
    • one 13cm in length along the bone
    • one round tumor 4 cm in diameter
  • lesion in the clavicle 1.5 x 1.1 x 2.1 cm
  • mild lymph node uptake (involvement) 1.3 x 0.9 cm
  • possible involvement in the sternum 3.2 x 1.5 x 2.5 cm (at the edge of scan and could have been a result of movement). Will confirm with a chest CT.
Total bummer, but we move on.

William's hair, eyelashes, and eyebrows are starting to grow back and he looks so good! But, it's hard for me not to wonder what may be growing on the inside too. He has CT scans of his chest (to include the sternum), abdomen, and left leg next Thursday. No decisions will be made until those results are reviewed and we feel like we have a complete picture of what is going on everywhere.

William takes it all in stride. He is enjoying the nice weather and even asks to be pushed in his wheelchair around the neighborhood. He is walking more as the radiation to his ankle and tibia seems to have decreased the pain and swelling. The bone is still fragile and he doesn't have the strength to walk long distances, but at least we don't have to carry him up and down the stairs any longer.

Next week is his 3 day 2 night field trip to Coloma. He is so excited and we are happy his treatments have panned out to make it possible. Ryan will attend with him to administer his medications and tend to any needs. Also, if needed, Ryan can bring him home each night to sleep and return in the morning.

The next Bucket List trip will be to San Francisco. He wants to have fun in SF instead of treatments! Go figure! We'll actually have to break it up into a few quick weekend trips as our schedule can't fit everything into a day or two. He opted to start with a Giant's baseball game and the night tour of Alcatraz!


  1. Julie you amaze me - over and over again!

  2. How do you have time to prepare an awesome RS lesson on top of all this? You are an amazing woman! I will continue to keep you all in my prayers! <3

  3. I'm so glad he gets to go to coloma!!
    I love you are built on the ROCK. Helaman 5:12. All of you are in my every prayer. Giant hugs from your cousins over here... XOXO

  4. What a trooper he is, and all of you, too. I hope the CT scan results next week bring good news.

  5. So glad for the update!! What great trips and fun memories. Love you guys! Have a blast in SF--a night tour of alcatraz would be AWESOME.

  6. Wow Julie, you AMAZE me!! I'm blown away by what a trooper William is...truly inspiring. I'm actually referencing you and William in my upcoming talk this Sunday. Maybe I should ask permission:) I can't tell you how many times reading your blog has strengthened, lifted, and inspired me during tough times. Thanks for sharing your experiences and testimony.
    love and miss ya,

  7. We want to join you at the giants game! Love you, big Willy!

  8. We love you all and are so grateful for the update Julie!
    Rebecca & family

  9. Way to go, Julie. We love you. We are all praying for you and William, especially Daniel who asks about William often.
    Dave & Jennie & family

  10. Zach was so excited to have William go to Coloma with the class. I sure hope he enjoys the time with his classmates.
    Merethe Dyer

    Zach Dyer's Grandma