Thursday, March 29, 2012

Tahoe? Check.

Sandwiched in between the scan results and the start date of another round of radiation, our family high-tailed it up to Tahoe for a 2-day family fun adventure and another bucket list item. I'd like to call it a little R&R, but it was everything but! We put the trip on the calendar in early February, carefully counting chemo cycles, contemplating all possible deterrents, and praying for snow. It makes me VERY anxious and nervous to plan something this far in advance because we are so used to last minute surprises. But so far, our efforts to complete William's bucket list have been blessed with remarkable weather and conditions to allow our family to make some wonderful memories. I can't help but credit this as one of God's tender mercies, assuring us that he is aware of our every need. This trip was no exception. We delayed chemo for a week (also so he'd feel good for the Donut Dash that Saturday) and left on a Monday afternoon. We had apprehensions about this because the rate of tumor growth seemed to be increasing, but some things are higher priorities for us right now. On Saturday and Sunday before our departure, a huge snow storm dumped 4 feet of new snow in Tahoe---the first major dumping of the year! It was perfect powder for making snowballs and snowmen, the sledding runs were fresh, and the crowds were small since it was the school week.

As soon as we arrived, it became obvious that all the boys wanted to do was roll in the snow. (Think stressed out mom who just wants to unpack and get settled, while 5 boys ignore her pleas to stop breaking icicles and stomping through the snow without boots or coats.) On Tuesday we headed to Echo Summit and the boys surprised us by lasting 5 hours in the snow! They were in their element. We paused once to have hot chocolate and snacks and then it was back to the runs.The weather was great. It was a little overcast, but the sun came out in the late afternoon. Even William begged to stay longer. Ryan and I were exhausted due to carrying William up the hill so many times, but it was so worth it!

On Day 2, we offered more low-key options: movie (at the theater!), scenic drive, lunch at a restaurant.... Nope! They all insisted on another day of sledding. Even William had uncharacteristic energy and enthusiasm. The only difference with this day the complete lack of clouds in the sky. It was beautiful and the boys came home sporting sunburned faces--some a little more unfortunate than others, but they had a blast. It was so warm, we were peeling off layers. After 4 hours of sledding, we were trying to keep them awake during the drive home so we could just put them straight to bed.

Remember to click on the photos to enlarge.

We did insist on the scenic drive to Emerald Bay, but all they wanted to do was climb!
Emerald Bay

Our balcony view was fantastic. Hot tubing every night was a welcome treat!

Thank you to dear friends who helped make this trip possible and our burdens a little lighter. We had a wonderful time!

The next morning William had to be up at 6:30 AM for the first of 12 days of radiation. Lovely. This week he also began his new outpatient chemotherapy regimen: Irinotecan and Velcade. The most brutal part is the schedule: 7 AM radiation appointment at Sutter General in downtown Sacramento and then chemotherapy at Sutter Memorial in midtown. He is receiving radiation to his liver, left inguinal (groin), and entire shin and ankle. He seems to be tolerating it all fairly well with mild, but controlled nausea. However, he has lost most of his appetite. He eats very little during the day, but continues to receive TPN and lipids at night via his broviac. The best part about it is all the reading time. William has finally found a series he LOVES and is finally feeling well enough to read...all the time! He reads during chemo and then comes home and reads for hours on the couch or in his bed (besides the occasional nap). He started the Fablehaven series while we were in Tahoe (1 1/2 weeks ago) and he's already half way through Book 4 of 5 and each book is 300-500 pages long. It makes my heart so happy to see him reading again. That makes things feel normal.

Tuesday, March 27, 2012

Yum! Those Donuts Were Tasty!

The Donut Dash was a success! Even the rain stayed away! I can't say thank you enough for all the generosity and support. It was a really, really fun event. William was so happy to be feeling well enough to participate and even got the first donut of the day (see interview below). It was so wonderful to see so many friends, doctors, and nurses there to all support an organization that touches our lives in a big way. It felt like a giant family reunion because we have grown to love our hospital family as much as our dear friends and family. A big thank you to Zack for once again putting together a fantastic and successful event! $35,000 was donated and over 1,200 people participated. 4 years ago, when it started, 25 people participated and just over $1500 was raised. It has come a long way 3 years later. Check out William's interview with the local news (and for those Highland High alumni, that's Richard Sharp in the anchor chair).

Here's some photo highlights. (Sorry about the poor resolution. I brilliantly forgot my camera and had to use my phone!)

Sweet friends. Cole stayed right by William's side the whole time!

Silly friends! Thanks, Aidan!

Friday, March 23, 2012

More Scan Results and What He Taught Me

The Donut Dash is coming…tomorrow, Sat. March 24th! It’s not to late to sign up—just show up to register from 7:30-8:15am (see for details). It’s not too late to donate either.


Last week William had additional scans of his leg and groin due to sudden increased pain and visible swelling in the affected areas. Side note: Although it was not to be my career or degree path, my college human anatomy class has proven invaluable. Highly recommended to those with the opportunity!

  • 3 skeletal tumors in the tibia (the bigger bone between ankle and knee)
    • top of the tibia just below the knee measuring 6-7 mm.
    • inside the bone running longitudinal (lengthwise) measuring13 cm in craniocaudal dimension (how's that for a vocabulary booster: meaning in the direction the x-ray beam travels during the scan. i.e., top to bottom).
    • at the metaphysis (wider part at the bottom of the bone).
  • Fibula fracture due to stress from rapidly growing tumor (smaller bone between ankle and knee).
  • Tumor 10cm in length inside the fibula bone (just like the tibia--craniocaudal).
  • Soft tissue tumor extending away from the body along the fibula measuring 2.5 x 3.0 cm. This part is visible and looks like a giant goose egg on the side of his leg. It is growing fast enough that we didn't notice it during a Friday appoinment, but on Monday it was significant.
  • Probable, but not definitive tumor growth in the marrow of the talus (the big bone on the top of the foot just under the tibia.)
  • 3 enlarged, metastatic (tumor spreading) lymph nodes in the left groin. The largest measuring 2.1 x 2.0 x 2.0 cm. The other two measuring 1.5 x 1.6 x 2.1 cm and 1.5 x 1.5 1.3 cm.

Plan of action:
  • Add radiation therapy of the groin, tibia, and fibula areas.
  • Continue with plan to radiate liver.
  • Leave the chest and abdomen tumors alone because they remain stable.
  • Non-weight bearing status to prevent further fractures and bone damage. He’s restricted to his wheelchair and walker. But he cheats a lot!
Radiation has begun. He'll have 12 treatments over the next 2.5 weeks. The best part is the 7:10 am appointment time!

Obviously, this wasn’t the news we wanted to hear. It’s horrible seeing your child in pain and not be able to do anything to cure it. A colorful array of pain meds are at our disposal and are being dispensed---just to William. William rarely ever complains. Really. Rarely. But the crumminess of his life set in with these last results and he just cried and cried that night. We did too. I held him in my arms and Ryan and I, tears streaming, listened to him ask why he can’t just be a normal boy. “Why can’t I run around the playground and kick a ball like normal kids? Why can’t I be a missionary, a daddy, an engineer…like normal boys? Why can’t I kick a ball farther than Soren (5 year old brother) because I used to be the best kicker?” We ask those questions too and can’t give him the answers that make complete sense to a 10 year old. We hold him, sympathize with him, and tell him we love him over and over and over again.

What he taught me in that moment was powerful.

I explained to him that these are questions he can ask his Heavenly Father in his prayers. The answers won’t usually come as spoken words, but as feeling in his heart and impressions in his mind. I asked if he would like to pray and if he would like me or him to say it. He asked to pray himself. With tender emotion he prayed out loud with sincerity and pleaded with his Heavenly Father that he may have peace and comfort and that he would be able to have the strength to handle everything. Not once did he ask why or ask to be healed. He just asked for strength, peace, and comfort. I can't help but believe the strong, sweet spirit inside him understands and accepts God's will better than we do. In that moment, he taught me all we need is continued strength to endure and the peace and comfort that comes from our faith in God's plan and faith in our efforts that we have done all that we can.

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!

Tuesday, March 6, 2012

More Donut Dashing

Additional Donut Dash information:

I just learned how to set up an individual fundraising page so donations can be made in his name (for those that want to skip the race and eat donuts quietly at home with a tall glass of milk.
  • Go to
    • click on Donate Now
    • search for Team WILLIAM in the drop down box at the top of the page
    • follow the instructions listed
Thanks for all the support! We're so excited to see so many of you!

Monday, March 5, 2012

Donut Dash 4-4-4-4

It's the Donut Dash's 4th year of 4 miles & 4 donuts 4 Child Life

Say what? The Donut Dash! Yum! This is a fundraiser for an organization very near and dear to our hearts: Child Life at Sutter Children's Center, Sacramento. Run/walk 2 miles in the lovely Land Park area, eat 4 donuts or 6 donut holes, run back 2 miles. It's all for charity so whether you actually eat the donuts or just grab and go is up to you. Personally, I'll eat some (because they're so good) and save some for later so I don't loose them all in an unfortunate event! Our whole family is going to be there this year, rain or shine, but hoping for shine. We'll be pushing William in his wheelchair and the boys will be on their scooters. We hope to see many of you there supporting us and an amazing program that brings so much joy to the lives of sick children. Click here to read more about how the Donut Dash started and what Child Life does for the children. (Millie, the dog, is part of the Child Life program).

Date: Saturday, March 24, 2012
Time: 8:30 AM
Where: Corner of Freeport Blvd & Sutterville Road inside William Land Park

William and Claire's names will both be on the t-shirt. We have created a team called TEAM WILLIAM. When you register, you can find our team name in the drop down box on the registration page. You don't have to participate if you just want to donate. However, if you want to be guaranteed a t-shirt, you must register by Friday, March 9th. That is THIS Friday, folks. So register now, before you forget (and to help Zack, the organizer, have fewer headaches on race day with last minute arrivals).

Register or Donate

Oh, and if you're worried about having enough time to train, don't worry, just contact me and I'll be happy to eat donuts together!

Thursday, March 1, 2012

The Bucket List

William has a bucket list. And we are making some happy memories.

The prognosis of William's disease has never been fantastic and the relapse doesn't make this journey any more fun. But cancer is a fickle thing and children are amazing warriors. We decided to make it more fun. William's list is fairly small. Actually, I think we asked him to list 5 things, so the length of it is our fault. In no particular order, here's the list:

William's Bucket List 
Go to a King's basketball game
Go to Tahoe to go sledding
Go to the beach
Go to Austin, TX (where he was born, but moved when he was 6 months old)
Go to San Francisco to have fun (not treatment) i.e. Exploratorium, Academy of Sciences, Alcatraz

With cancer, timing is everything and then some. Seriously, one of these days I would like to just work off my own timetable. Is that too much to ask? Apparently, yes. So many variables make the journey very unpredictable. Luckily, he is tolerating his current chemo regimen well enough that we can at least predict when his good week will be. (He has 1 chemo week, 1 down week, 1 good week, repeat). It's the blood counts and need for transfusions that are not trending as predictable as I'd like. Regardless, we are making the most of the 1 good week and focusing on the bucket list.

Last week, school was out for the entire week. Something to do with furloughs, California budget crisis, our children taking the fall for other's poor decisions... I digress. William spent all day Sunday in the hospital getting blood and platelet transfusions, tanking up for a week of fun. Monday was a holiday. Tuesday the doctor gave a thumbs up on blood counts. Tuesday night we delivered our three youngest to their cousins house and we all spent the night. Wednesday morning Ryan, William, Clark, and I flew to Austin, TX! Sunday we flew back, picked up the boys, and drove home.

Here's a recap of what we did in between. (hint: click on each collage to enlarge)
We ate A LOT of amazing Texas BBQ at The Salt Lick and Rudy's. How can you not love a BBQ place that is a gas station too?

Boating on Lake Austin with the Harwards
The Harwards. Judy was with us for William's delivery so she's known him since the moment he was born!
Safari Texas Style. The donkeys and ostrich were a little hungry!
San Antonio---The Alamo and Riverwalk. Oh, and ice cream--a necessary food group in our family!

Zilker Park canoeing and turtle sightings
University of Texas at Austin campus---Football and Track stadiums, engineering buildings, The tower, bookstore
Hook 'em Horns!
Hiking at Mt. Bonnell
Our old apartment: 2nd story above William's head. St. David's Hospital where he was born.
We had a great time. Ryan and I loved listening to William and Clark giggle and enjoy being together. One afternoon William said, "I'm so glad Clark came because it would be so boring without him." One of our main goals was for the two of them to bond more and create some special, happy memories together.

William checked into the hospital on Tuesday for the next round of chemo. He also had a full set of scans: Chest and abdomen CT, liver ultrasound, ankle x-rays. He'll be here until Sunday. Those updates will be in a forthcoming post.

William wants to share how much he loves his dear friend, Claire. "I really miss her. She was fun to talk to. In Primary, she always knew the answers to questions. She always had a good sense of humor and a beautiful singing voice. She was always sweet and nice to everybody. She was a very good friend to me. It was very nice to have a friend who knew what it was like to be in the hospital all the time. I love and miss you, Claire." William has known Claire since they were 1. Claire had a congenital heart defect and passed away last night. Our thoughts and prayers and love are with her family.