Friday, March 9, 2012

The Ups and Downs of Scan Results

I'm continuing my plug for the Donut Dash. You can still register to run and eat donuts to support Sutter Child Life. We are so excited for the amazing support given in just a few days and can't wait to see so many of you at the race. To just donate, visit the fundraising page for Team William. We are so touched by the generosity of so many of you who have donated to this amazing program in his honor. Thank you! Thank you!

Now on to the latest scan results.

Last week, when William was admitted for his next round of chemo, he had his routine set of scans that are done after every 2 rounds of chemo. The anxiety level for these results was higher than normal. These scans would give us the most accurate sense of the effectiveness of the current chemo and whether it was keeping the rate of tumor growth in check. To sum it up, it was a roller coaster of mixed emotions. Here's the run down:
  • Abdomen CT: existing tumors left after resection (Nov. surgery to remove bulk masses) appear to be decreasing in size
    • suspicious lesion in the right lobe of the liver, possible metastatic lesion (likely new tumor growth in the liver)
  • Chest CT: previously known masses are stable
    • small new nodule near lower left lung
    • pleural thickening suggesting metastasis and inflammation (new tumor near lungs)
  • Ankle X-ray: continued disease progression and bone deterioration in the lower tibia
    • apparent new lesion in the mid tibia, but scan was dedicated to the ankle
    • recommend follow-up scans for entire left tibia and fibula
  • Liver Ultrasound: confirmed lesion in liver to be new metastatic disease (new tumor growth)
Here's what we're dealing with. Our oncologist wants to begin radiation on his ankle, liver, and chest. Our radiology oncologist is more conservative. The chest tumors are stable and she is a little skeptical of the new suspected tumor mass near the lungs. She wants to study it more and consult with other colleagues. She is also skeptical of the ankle x-ray because it is just an x-ray and soft tissue is not easily viewed. She would like to see a CT or MRI of the ankle to make a more definitive assessment. William is only 3 months post-ankle radiation which she says is not really enough time to assess the full effect of radiation. He is also not increasingly symptomatic. The previously known chest tumors remain stable and she is skeptical the small, new lesion is really a lesion, but in any case, he is not symptomatic and radiating that area opens a new can of worms of crummy side effects and risks.

What's the course of action? 
  • Ankle: The ankle is easy to radiate at any time, treatment does not cause crummy side effects, and he is not complaining of pain except when the doctors poke at it or he walks long distances. Solution: nothing for now and readdress in a month with more scans or when he becomes more symptomatic.
  • Abdomen: The tumors are decreasing. Solution: let the chemo continue to fight it.
  • Chest: Since it is stable and the possible new lesion is small, we want to maintain the current quality of life he has right now. Solution: no radiation and let the chemo continue to fight.
  • Liver: The lesion is relatively small and in a spot previously treated. His liver was previously responsive to radiation. Radiation is easy to this spot with mild crummy side effects. Solution: Radiation.
  • Overall: Switching the chemotherapy cocktail to an outpatient option: Irinotecan and Velcade. More of the details below.
Our hearts sunk knowing the cancer is spreading, but at the same time, we know we are doing all we can. Unfortunately, this is a vicious disease that is resistant to treatment more often than it is responsive. We are in a strange place with his treatment plan because we are more acutely aware that medicine is still a guessing game for many diseases. Our doctors are great and we have complete trust and confidence in them and their decisions to fight the cancer as aggressively as they know how while keeping it all in William's best interest and always consulting us before any decisions are made. But it is a strange place to be calling the shots right now. Last year we just did what they told us because, frankly, we didn't have any other treatment options. We continue to educate ourselves along the way and feel very fortunate the treatment plan has gone as it has...with the exception of the relapse, but that wasn't in the plan and nothing could have prevented that.

On a happy note, William looks good and feels as good as expected. He continues to tolerate the chemo well, although each successive treatment seems to bring more fatigue, nausea, and the need for blood transfusions sooner than the previous round. He has wanted to return to school (it's been a few months), but each day he plans on returning, he ends up feeling too tired, nauseous, or needs transfusions. And, of course, on the really good days we just focus on quality family time with good memory making moments.

The other obstacle we've been tackling is keeping him from catching the illnesses the rest of us have had. Last year we all were miraculously healthy considering we had a preschooler, two kindergarteners, and a first grader. A coughing cold, a stomach bug, a fever bug, illness induced asthma, and ear infections have been cycling through our family for the past 2 months. All but William have been hit. In the few days a month when I’m not at the hospital or clinic with William, I usually get to plan on being home to do laundry, errands, and pay bills. Instead, I've found myself running the other boys to the pediatrician's office, the pharmacy, and trying to remember their medicine dosing schedules on top of William's. Thankfully, Soren loves his breathing treatments and reminds me morning and night! Oh and did I mention the sleep chair in William's hospital room sleep chair was infested with bed bugs again? It was. It was gross. We even found one as proof for Environmental Services to sample. It was on William's pillow. Even more gross!! At least we discovered it the day we were admitted, but it also meant we were moved to the quad room. Bummer.

Moving forward with outpatient treatment has its obvious perks. We will hopefully no longer need to spend the night at the hospital! Happy Dancing! The chemo combination, Irinotecan and Velcade, is a current clinical trial at the University of Michigan Cancer Center. William is not part of the study, but the doctors feel from their research that it is equally effective as the Irinotecan/Temador option, but with fewer crummy side effects. The treatment schedule is Week 1: M-F infusions; Week 2: T/Th infusions; Week 3: off, but M/Th clinic visits. The new change in treatment will hopefully continue to slow the cancer progression since he's never received either of these drugs and hasn't built up a resistance. It will also provide William with increased quality of life. The new treatment should not suppress his bone marrow as much meaning his counts won't drop as low or as long. However, I'm wondering about the real convenience when I contemplate the daily drives to the hospital (30 min each way), infusions that will take 1.5-3 hours (depending on the day), the extra time waiting that must always be factored in when visiting any medical facility, and the possible child care scheduling that may surface. I just keep reminding myself that we will all sleep in our own beds, eat our own food, use our private bathrooms, and not have creepy crawlies partying all night!


  1. Wow. Julie I just can't believe all that you are going through .... thank you for the detailed update I really appreciate knowing what is going on. well you will continue to be in our prayers for high quality of life and comfort ...the rest of your family for good health and you and ryan for continued strength, peace, support, and guidance. Love you oh so dearly. XOXO

  2. amen--thanks so much for the update. you guys are in all the prayers! i am continually amazed and inspired by you and your family. love you! oxox

    [ps. bedbugs again???? that should not be possible. yucky! so sorry!]

  3. Julie, I am always impressed with how you manage to clearly organize and summarize so much medical information. Somehow I suspect that the doctors' reports to you aren't always so succinct and straightforward! Thank you for translating it all into plain English for those of us who are anxious to know the latest. We're happy that William has tolerated chemo well thus far, and we hope that this outpatient version ends up being easier on all of you. We would love to help with any childcare needs that arise. No more bed bugs is definitely a good thing!

  4. Hi guys- Spencer, WC and Emily here. Spencer was super excited to see the note from William at the clinic yesterday, and we are sorry we did't get to see you guys. We miss you too William!

    We are keeping up with you through this site, and are sending you healthy thoughts and prayers. Sounds like you get to be home and away from bugs (ewww- the thought of that after so many nights sleeping on those medevil torture chairs- shiver). We hope to hear the new formula is working.

    Lots of love- the Pihls

  5. Julie, You and Ryan are brave beyond words to express. Your blog is a masterpiece. I have loved the articles about the Make A Wish extravaganza and the visit to Texas. I am overwhelmed at the demands on your life right now. I just cannot imagine the stress that goes with trying to keep every "ball" in the air at once. Uncle Rich and I love you so much and we admire you. You are in our prayers. Aunt Linda

  6. Julie,
    We're here to help too. Being so close we can even do school drop off and pick up if you need (or want) a little relief from your schedule demands. Overall we are so glad to hear that William is feeling as well as he is!

  7. You're on our minds today-it's the day of the doughnut dash. We ate granola instead of doughnuts, but we too are grateful for the fun and rich distractions child life at Sutter has provided everyone along the way. Happy dashing, I hope there are sugary fingers and lips aplenty today!

  8. Julie,
    We love you all so much. We're grateful for the information and updates you share on the blog. We pray for all of you to be blessed with health, strength, and quality of life. Hugs to you all!
    Love, Becca & Mike and family