Favorite YouTubes

Evidently the Angry Birds video had been disabled. I don't know what happened other than I think BayKids was probably redoing their YouTube site around the same time I linked to it. It is up and running again. I've reposted so you can enjoy as we continue to remember him and celebrate his life this weekend.
Here's another goodie, reposted by popular demand!

Remembering William

William's obituary is in today's (Sunday, June 3) Sacramento Bee and posted online at: http://www.legacy.com/obituaries/sacbee/obituary.aspx?page=lifestory&pid=157894118

The Party Details

We invite all to attend the services next week on Thursday and Saturday to honor William.

Thursday, June 7th---public viewing
5:00-8:00 PM
Miller Funeral Home
507 Scott Street, Folsom, CA 95630
916-985-2295

Friday, June 8th---private family burial

Saturday, June 9th---Celebration of Life service
12:00 PM
The Church of Jesus Christ of Latter-day Saints
89 Scholar Way
Folsom, CA 95630

For those who would like to make a donation in William's honor, our family has chosen two organizations we would like to support: Sutter Child Life and a national Neuroblastoma research organization.

The Sutter Memorial Child Life Program was part of William's everyday life in the hospital. They provided support to both William and our family. Their program strives to empower children and families to cope, understand, and heal as they encounter illness and hospitalization. Opportunities are offered to create meaningful experiences through play, education, preparation, and emotional support. These programs and activities include educating children about their illnesses, preparing them for procedures and surgeries, offering normal childhood play experiences (toys, games, arts & crafts, movies), celebrating holidays and special events, etc.

Checks can be written directly to the Child Life Program and they can be "tagged" to do something specific to honor William.

Checks can be given directly to us or mailed to:
Child Life Program
Sutter Memorial Hospital
5151 F Street
Sacramento, CA 95819

The New Approaches to Neuroblastoma Therapy (NANT) consortium is a group of 15 major pediatric institutions in the US that test new therapies that have promise for improving long-term survival for children with neuroblastoma. William was diagnosed with high-risk Neuroblastoma. It is an aggressive cancer with a low cure rate. Many of the treatments William received at UCSF Children's Hospital and Sutter Memorial Hospital were based upon laboratory and clinical studies conducted by NANT consortium investigators, who continue to develop new treatments. Children's Hospital Los Angeles Foundation Department handles all contributions to the NANT consortium and its member institutions.

To donate by mail, checks can be mailed to:
Brooke Glazer, Director
Foundation Department
Children's Hospital Los Angeles
4650 Sunset Blvd, #29
Los Angeles, CA 90029
323-361-1746
bglazer@chla.usc.edu
**Please make checks payable to Children's Hospital Los Angeles, and the memo line on the check should read: In Memory of William Murdock/NANT. Please also include your name, address, phone and email address, and note that the donation is in memory of William Murdock and designated for NANT.

To donate online, go to:
www.chla.org/donate
**Under "I would like my donation directed to:" please make sure to type NANT into the "Other" box. You can also specify that your donation is in memory of William Murdock.

Returning Home

Our sweet William returned home to the loving, welcoming arms of his Heavenly Father on Sunday morning, May 27, 2012. His battle with cancer is over, but his legacy of faith, optimism, strength, patience, and adventure will live on forever.We love him dearly and are so grateful for the gospel of Jesus Christ and to know our family is eternal. We are thankful for the gift of his life and those who helped to extend it and enrich it.

Our boys are doing very well. William's passing was sweet and peaceful and we were able to have some precious, sacred family time all together. Our children understand and are comforted by knowing God's plan. We know our family will be together forever and that William is not far away. Clark, 8, was very tender with his emotions and commented with tears in his eyes that he feels William is really, really happy and is still very close. He added, "It feels like he is touching me right now."

We are still making arrangements to celebrate his life. I will post more details in the coming days, but for those of you who are planners, like me, it will not be this weekend. We want to have time to be with our children and not feel like their needs have to be postponed again for William. The tentative plan is:

• Thursday, June 7--public viewing
• Friday, June 8--private family day
• Saturday, June 9--Celebration of Life services

Soaking up each moment

Guess who?  I wanted to give you an update because I feel like the whole village has fallen in love with William and he is on our minds all the time lately.  William is becoming increasingly tired but after his catnaps, he is alert and we are able to enjoy this time with him.  Julie and Ryan are taking turns sitting with William and holding his hand.  His brothers also take their turns having special time with William and they too sit and hold his hand.  These moments are very sweet and tender.

William always perks up for his visits with James.  It means the world to James when Julie and Ryan tell him how William changes when they are together.  Tonight as we attempted to leave to go to swim practice, William cried that he didn't want James to leave.  Guess who didn't swim today?  How could we say no to this sweet boy?  He's got all of us wrapped around his finger!  William doesn't have a lot of energy but he still beat James at 2 out of 3 games of Mario and Sonic at the Olympic Games on the Wii. 

Julie and Ryan appreciate all the prayers, cards, emails, messages of love and support.  I am also grateful for the delicious strawberry jam and jam vehicles (biscuits) dropped at their door today!  And thank you all for all the nice comments written to me and my son on this blog and on Julie's Facebook page.

Ode to Angry Birds

Last year, during William's bone marrow stem cell transplant at UCSF we were introduced to BayKids, an organization that "empowers children facing serious medical challenges to express themselves through the art and magic of filmmaking." They partnership with local hospitals, teaching "digital filmmaking skills to hospitalized children. Through [their] programs, children discover their own unique voice and experience the healing power of self-expression." And they are awesome! What a gift they bring to the children and their families.

They help the children come up with ideas of stories to tell and how to tell it on film. Some conduct interviews, give tours, share a creative story, etc. William chose Angry Birds as a theme (big surprise) and stop motion animation as his method. We spent months slowly crafting the construction paper figures and William planned how the story would be told and shot. Since BayKids only comes to UCSF on certain days, we carefully coordinated his last treatment to be there when he could do the final filming of his project. The talented volunteers take over from there with editing and final production. I suppose William could have been a part of that too, but he was done with treatment at UCSF at that time.

Each year BayKids hosts a Movie Premier featuring kids from the BayKids Moviemakers Program at UCSF Benioff Children's Hospital and Children's Hospital and Research Center in Oakland. William and his film were one of the handful to be chosen to be honored and celebrated at this year's event at the de Young Art Museum! What an honor! The kids are interviewed and honored on stage. Each of their films is also screened by the entire audience. William and our family were really looking forward to this event. We even took William into the hospital on Thursday for blood transfusions just to give him a boost to make the day a good day. Today is that day. Unfortunately, we decided on Thursday evening that his weakening condition was not going to allow him to attend.

Our great friend, Zack, came up with a brilliant and very generous idea. He would attend in William's honor and videotape the whole thing for him. Wow. Problem solved and what a gift. William didn't even have a chance to be upset about not attending because he liked the alternative so much. I also think he is coming to an understanding that he just isn't able to travel outside the house any longer. The ideas and possibilities improved. William was able to FaceTime with Zack via iPad when Zack accepted his award. William was able to give a brief speech via FaceTime. The iPad was connected to and broadcast over the house system so the audience could hear him. Oh, the technology! Thank you to Zack, and his brother, Matt, for going to such great lengths to make this special for William. (And for braving the traffic and parking nightmare during Bay to Breakers today in the the same vicinity!)

I suppose William would say one of the perks of this format was snoozing through the parts he wasn't interested in. :)

Enjoy the show!

Best Friends

And it's Lisa again.  I just have to start this blog with a statement of the obvious: I love that boy.  I just love him. 

And I love our boys together.  They had a really good visit today.  William really perked up when James arrived and he smiled and laughed when James read "Walter the Farting Dog".  Ahh, potty humor.  James understands that time is precious and it looked like the weight of the world was lifted off his shoulders this afternoon after we left.  James had a really rough visit on Wednesday night (maybe it was Tuesday, we are tired).  William was very irritated (very irritated for William, less irritated than me in commute traffic) and James could sense this.  William wasn't always awake and wasn't always making sense when he was talking.  On a couple of occasions, I thought James was going to shoot through the roof with anxiety.  Why put my kid through this?  Because life isn't fair.  And this is our life.  And it is important to take our son through this transition time so he too can transition.  Yes, it is painful for him but he goes to visit to honor his friendship with his best friend, that is all he has to offer.  We do not believe (and I say "we", but my husband is the psychologist who gently guides us with his brain bending to right my wrongs) that you hide the tough stuff from your kids because it teaches them that you are not honest with them and you believe they are not strong enough to handle the tough stuff.  We also bring our son down this tough road because pretending this experience is anything less than the most painful moment of his life is disrespectful to his friend.  Any questions?  I didn't think so.

So we had a bad visit the other night and when we go home we just sat in the driveway and finished talking about what was happening.  James really hoped that we would get one more good visit with William and I am so glad that happened today.  At the end of our talk in the car James said, "I'm really excited for William to go to heaven".  Heartbreaking, yes.  But my son has compassion for his best bud and I couldn't be more proud.  In tough moments James has cried that he wants to go to heaven with William because he will miss him too much.  I understand this is a ten year-old boy solving an immediate problem for himself as a ten year-old boy would do but still heartbreaking.  But this time he didn't mention going with William, he wasn't thinking about himself, only William.  It was important for James to go through this.  If he only saw William when he was feeling well, it would be much harder to understand.  Adults understand cancer sucks, James gets it now too.  And James understands everyone is working around the clock to keep William comfortable but he sees that there is still suffering and he wants his friend to be free of pain.  We all want that.

Best Friends

So maybe you are thinking, "Hey Lisa, get your own blog!  We read this blog to check up on the Murdocks".  Fine.  I'll give you your update.  The Murdocks are also taking their family through this same transition.  They are no longer allowing any visitors or returning calls or emails.  They are hunkering down and nurturing their boys.  Tonight Ryan is at the Father and Sons camp-out with Clark, Cameron, Nathan, and Soren.  They all need special time with their parents and they need time with William.  An overwhelming task for any of us, but Julie and Ryan are leading their children through while also balancing the care of one very tough boy. 

And speaking of care- I mentioned the term "Momcologist" in my last blog, a term that I love.  I propose to add "Mompharmacist" to Julie's credentials.  I'm sure other parents have this same experience but Julie and Ryan are so well-versed in the drugs, and I mean the really big expensive and powerful drugs, it is amazing to me.  And Julie, you know me (and my appreciation for a good little white pill) as well as anyone, so you know if I say you are a "Momcpharmacist", well that is an honor higher then Mother-of-the-Year.

The Finishing of the Bucket List

I'm not quite sure where to start, but THANK YOU is probably as good a place as any. Thank you for the outpouring of love, support, and prayers. I can't possibly convey in words how truly blessed we are to be so loved. Thank you to amazing nurses, doctors, hospital staff, and volunteers who we love so dearly. These wonderful people have cared for us each day over the past two years and pulled us through good times and bad times. Each of you have become dear, dear friends who crossed the lines of professionalism a long time ago! We love each of you more than you'll ever know!

Thank you to friends, neighbors, church members who have swooped in to fill in all the neglected cracks at home. You have helped us maintain balance and routine and eased our burdens countless times.

So what has been going on?

After William returned from his Coloma field trip, he had his normal scans (on a Thurs) to check disease progression before starting a new round of chemo. He was physically exhausted, but we suspected this was from 3 fun and full days of hiking and panning for gold.

(remember to click to enlarge)

On Friday afternoon, we left to San Francisco on another Bucket List trip. We went to a Giant's baseball game that night and then spent Saturday exploring the ruins of Sutro Baths (where my great grandfather was baptized over 100 years ago), visiting Chinatown, riding the trolley, walking the wharf, and a trip to Alcatraz for the night tour. William was too tired the whole trip to do much more than enjoy the ride in his wheelchair. He napped often, but said he had fun.

 I suspected the need for blood and worried about his increasing labored breathing. After calling the doctor, we made a stop at the hospital on our way home to receive blood and platelet transfusions overnight. His breathing continued to be labored, but the doctors told us it was due to disease progression, but that discussion would happen on Monday. On Monday, at the scheduled clinic visit, we learned that the tumors were spreading and growing. Uncharacteristically, I haven't taken the time yet to dissect the scans, but basically everywhere he had tumors has more tumors and they have grown, new ones are in his abdomen, and most significantly, in and around his lungs. The tumors aren't responding to treatment. We were given our options and it didn't take long to go through them. We have chosen to discontinue chemotherapy.

A chest x-ray showed an alarming amount of fluid in and around his lungs and we were given less than an hour do decide whether to have chest tubes put into the lungs to drain the fluid or not. We went with the chest tubes. Over 2 liters of fluid drained that afternoon and have continued to drain since.

Over the next several days, we received many tender mercies and answered prayers as solutions evolved as to the course of his care. It would take too long to list, but it is very obvious to us that God's hand was directing the course of events. William was able to come home last Thursday with two chest tubes in place and connected to collection bags. A hospital bed is set up in our room and William is on oxygen 24 hrs/day.

William was able to attend William K.'s funeral on Saturday morning as planned. It was a sweet service and William and I watched a video of the two of them in the hospital dancing and throwing paper airplanes down the hallway. It brought back good memories and William said tenderly after watching it, "I will really miss William. I really liked him. He was a good friend." William returned to the hospital on Saturday afternoon and ended up spending the night getting multiple blood transfusions. Thank you to my dad who had his first hospital sleepover with William so Ryan and I could rest.

On Monday, the last of the Bucket List items was crossed off. He went back to San Francisco for more fun! Aerial fun! He flew over Alcatraz, the Golden Gate Bridge, California State Capitol, Raley Field, the Sacramento Temple, and our home! What an awesome gift. Thank you, Zack! You have a gift for touching the lives of children.

clockwise from top left: Raley Field, State Capitol and Tower Bridge, William's Hospital, Zack and William, our house, Sacramento Temple

We are very tired from the intense activities, decisions, and roller coaster of emotions. We are grateful to our families who have traveled to be with us and the love and support we feel from all of you. We are so proud of our hero, William. We love him dearly. His courage, determination, faith, endurance, patience, long-suffering, strength, example, and cheerfulness have made this journey inspiring.

Home Sweet Home

Friend Lisa again.  I'm sorry you get me again tonight; I too look forward to reading Julie's beautifully written blogs.  But you'll take what you can get, right?  I am happy to report that William came home today.  The original plan was to stay at the hospital until Friday with chest tubes in place.  It was discovered yesterday that William had the smaller tubes in place that could remain in place and be clamped to allow him to come home, this was GREAT news.  Then Dr Abramson, the Murdock's favorite surgeon got involved and came up with something better.  William is now home with some sort of collection bags in place.  The Murdocks are so grateful for the medical staff and they love Dr. Abramson.  I met her after Will's last surgery and she is full of character, the highest compliment from me!


Julie and Ryan are very at peace with how they were able to get the right sized chest tubes in when they were needed and that they are able to come home today.  Their strength and their outlook never fails to impress us all.  They appreciate the support of everyone around them  They read their blog comments, Facebook comment, and emails, but even the Murdocks get tired.  They are very tired right now and will try to get a little rest and spend time with their family.  As I am sure you can understand, they are not accepting visitors or returning phone calls right now.

Here are a couple of special photos:

William beating James at Chess on Tuesday.

Will with a sourdough alligator.  He ate a little of the leg.

A side note: William met a friend in treatment, Spencer, who is the same age.  One evening when we were visiting, Spencer's dad came down the hall at the hospital and recognized me.  He is my husband's sophomore year college roommate.  It is a small world.  Today Spencer's family wrote a wonderful tribute to their friend William Klopper, who recently lost his heroic battle with cancer.  It was a beautiful entry.  In the entry they called William's mom a "Momcologist".  I loved that.  These parents are amazing!

A Quick Update

Hello.  Friend Lisa here.  Julie asked me to post an update for her tonight as she and Ryan are with William in the hospital.  Julie has been a blog-slacker lately due to a wonderful few weeks of small miracles.  A week or two ago she told me a great story about how William was feeling great after an especially good transfusion and he rode the scooter down to the park to hang out.  And, um, yes, we all remember the orders about about no weight bearing on the leg.  Last week William went on his much anticipated fourth grade trip to Coloma.  He had a wonderful time and we are all so thankful for that special trip.  But with barely time to unpack and repack, William and family all hit a Giants game on Friday and Alcatraz on Saturday to complete William's bucket list.  These last few weeks have been so full of great memories for the Murdock family and we are all grateful for this.  And we are all amazed that Julie can pull off all these trips along with scheduling many clinic visits and tending to the needs of 5 other boys (I can't forget Ryan).  Amazing.

Julie and William took a detour to the hospital on the way home from San Francisco on Saturday night for much needed transfusions.  William was feeling pretty crummy.  His oxygen saturation was also low and his heart rate was up.  He had fluid in his lungs and he was working hard.

Today Julie and Ryan met with their doctors and William was admitted for more blood.  They took a detour from getting more blood and quickly inserted two chest tubes to drain the fluid in William's lungs.  The fluid build-up was the top priority but William had said before that he didn't want a chest tube.  But William has a bigger concern; he wants to be at his dear friend William Klopper's funeral on Saturday.  It seems unimaginable but William decided to have chest tubes put in today to get the fluid out so that he could honor his friend who he met in treatment.  The Kloppers became very dear friends to the Murdock family and they all felt the loss when William passed last week.  Chest tubes were placed and at 9 pm tonight, Julie reported that William was starting to wake up, his breathing was much less labored, and he had drained almost two liters from the two tubes, combined.  Wow!

We are glad that William is much more comfortable.  The results of the scans from last week are not good.  The cancer is progressing.  I know Julie and Ryan will provide a much more accurate blog when they have a spare minute, but there are more tumors around the liver and in and around the lungs.  They aren't sure why, but his hemoglobin is not staying high with transfusions.  Julie expected that he would get another transfusion tonight.  Sadly, I am sure I was told more but it all seems a bit blurry; my emotions were perhaps running a bit high today, too.

I may not have the clinical details all correct but I can tell you some other important stuff.  William has asked, in addition to attending William K's funeral, to see Millie, his favorite therapy dog, and to go to San Francisco to the Academy of Sciences and Exploratorium.  Millie has been unable to come to the hospital for the last two months as she contracted a non-contagious parasite.  Her handler made a special call to the vet to get clearance to come in tomorrow and be with Will.  Everyone who knows Will feels the same way about him; he is a special boy.

Julie and Ryan will continue to figure out what is best for William.  At this point they are really calling all the shots and they are so smart and compassionate about every decision.  I know the Murdocks know how much they are loved by all of us.  I know they feel your prayers for William and the entire family. 

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!

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.

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!

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 www.donutdash.org for details). It’s not too late to donate either. www.active.com/donate/DonutDash2012/williammurdock.

_______________________________________

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!

Results:

• 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.

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!

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 www.donutdash.org
• click on Donate Now
• search for Team WILLIAM in the drop down box at the top of the page
• follow the instructions listed

Or

• Click on www.active.com/donate/DonutDash2012/williammurdock

Thanks for all the support! We're so excited to see so many of you!

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!

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.

THE Trip!

What a trip! William's wish to go to Harry Potter World was fulfilled! And the Make-A-Wish Foundation is Ah-Mazing!

After a fun-filled week at more theme parks than I care to remember, we are finally settling back into our routines. We flew home almost 2 weeks ago on Monday, arriving after midnight, but in time to catch a few hours of shut eye before being back at the hospital Tuesday morning for another round of chemo-6 days. Luckily our kids were still on east coast time and woke up bright and early. Ryan and I weren't so lucky even if our bodies were on east coast time. We were exhausted!!! But it was all worth it! William was radiant. I haven't seen him feel or look that good for that many consecutive days for a very long time. But the recent completion of chemo has drained the energy yet again. Although he still looks good and is happy, happy, happy!

The trip began early in the morning with a 5am knock on the door from the limo service to the airport. The boys loved it and were only slightly disappointed that the limo was white. They have this funny belief that the Jonas Brothers are in all black limos and Hannah Montana is in white limos! They got over it pretty fast and we piled in. The flights were good and almost uneventful. The pilot let the boys explore the cockpit and the flight attendants handed out extra cookies. The only significant event was when Soren tried to remove a lid from a Play-doh container and one of his bottom front teeth flew onto the chair. It wasn't loose. It was his first tooth. His urge to cry was quickly curbed as we gushed over the exciting fact that he was the first boy in our family to loose a tooth on a plane! There's always something to be said for feeling a little special.

Our resort: Give Kids the World! Wow! And the wow isn't because it was 5 star amazing, but because of the people who work and volunteer there and the special attention they give to making it magical for the Wish Child and their whole family. Several times, just walking around the grounds I got a little teary just thinking about how amazing everything was and the impact of it all on our lives. All of the boys got a special pillow from the Pillow Tree in the Castle of Miracles, the wish fairy left presents on our kitchen table each day, William got a "star" in the star tower of the Castle of Miracles, various characters came each day to greet the kids, pirate party at the pool, Super Bowl party at the pool with a giant movie screen, popcorn, cotton candy, snow cones, hot dogs, etc., all-you-can-eat ice cream parlor, breakfast each day in the gingerbread house, horseback riding, carousel rides, train rides, mini-golf, remote control boats, fishing, arcade.... should I stop? And this was just at the resort. I think the kids were shocked when they asked to do or eat everything and we always said YES!

Harry Potter World was William's favorite! And of course, we went there first. The Hogwartz Castle ride was a hit! Butter beer wasn't appreciated by all---a little on the too sweet side for some of us, but still a yummy treat. The Hippogriff ride was ridden over and over again by the four younger boys---William is a little too fragile for that much jostling. And Ollivander's wand shop was pure magic. Really! Ask Soren (5yrs old). We hit Harry Potter World first thing in the morning and spent a few hours there. Then we wandered over to Island's of Adventure, another area at Universal Studios, and spent the remaining part of the day there until heading back to Harry Potter World again to finish out the last hour of the evening. We loved meeting up with some Hadfield cousins from VA who coincidentally were there on vacation too! So fun and always good to have a few extra adults and teenagers to tag team the boys!

A bit of history for those of you who may not be Harry Potter aficionados. Ollivander's is the name of the wand shop where all wizards go to buy their wands before entering The Hogwartz School of Wizardry. However, you don't pick the wand, the wand picks you. At the park, wands are sold in the tourist shops and at kiosks in the park for a quick souvenier purchase, but if you are willing to stand in a long line, you can actually go into the portion with Ollivander himself and watch a small production with a lucky audience member and witness a wand picking its master. Our return in the evening yielded very small lines so we got in line. William's lovely bald head and special blue button designating him a Wish Child earned him the coveted role of lucky audience member. The room was so authentic to the movie, the Ollivander actor was fantastic, and the rigged room made every small child a believer in magic. William told me before entering that he didn't want a wand because he already has one that he loves that was made by the father of a family friend. It is very cool. However, after the whole production, we told him he could have another if he wanted. He did. His brother's commented, "William is so lucky because he got a wand that does real magic!" They love the wands they picked too.

We also enjoyed time at Disney World hitting the Magic Kingdom, Animal Kingdom, Disney Hollywood Studios, Epcot, and Sea World. Some of the highlights were the Aerosmith roller coaster which marked William's first "upside down" ride, the stunt car show, more upside down roller coasters at Sea World, the Lion King show, feeding the dolphins, the sea otter show, the Test Track at Epcot, any and all log rides. We packed lots into each day, but we tried to stay at the pace of the boys. We never made it to the parks before 10am, but always stayed until closing. William's special blue button was great. It got all of us in special entrances, front row seats, fast pass lines, and often let us ride our favorite rides over and over again without getting off. During a dramatic melt down by Cameron for some reason I can't remember, an employee stopped to chat with William about what things he was enjoying and tried to cheer Cameron up without success. Then she marched them over to the ice cream counter and gave them all ice cream cones. What a treat and kind gesture.

The flights home were long and late, but we made it into our beds by 12:30am, happy and exhausted.

Here's a slideshow because I haven't found enough time to do much photo organizing yet. I tried to set it to music, but it was giving me enough headaches. I gave up so you'll have to settle for boring silence. I haven't downloaded any of our video and we just barely got all the laundry of the past 2 weeks finally put away today!

William's week in the hospital for chemo right after we came back was fairly uneventful. He started getting nauseated on day 4 of 5. He came home feeling pretty crummy for a couple days, but is bouncing back just in time for his counts to drop. He's probably neutropenic by now and he's probably due for blood and platelet transfusions (he was close and trending down on Thursday). Due to the Monday holiday, he's not due back into the clinic until Tuesday. We'll see if he makes it until then. We may be making a trip to the 6th floor for some blood work a little sooner.

Update: Got the slideshow up because we spent Sunday in the hospital getting blood and platelets. He's not neutropenic, but he's close. Not sure if he's on his way up or down.