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!