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.

Perfectly Scripted Pinewood Derby

Our biggest concern with this year's derby, other than just finishing both cars, was how do we deal with hurt feelings if one car ends up being better than the other. The root of this problem stems from Clark having a hard time understanding why William seems to get "special" attention. All the kids feel this way, but Clark just seems to vocalize it and dwell on it more often. He is constantly upset because William comes home from the hospital with various toys and trinkets or he finds out that William had Jamba Juice or In-N-Out for lunch after his doctor appointments. We try our best to be sensitive to this and make special efforts to make sure each of our children feels special, but it's hard and we're walking a fine line. I know this is true in all families, in all situations, but it just feels exacerbated with this whole cancer thing. So this derby thing raised some awareness as to how we were going to make sure they both come out feeling like winners. (I'm all for kids learning how to be winners and losers, but I didn't feel like teaching it that day).

The carving of the car and the outfit to do it!

The boys did a great job designing, carving, and painting their cars. We tried to give them some sense of ownership before we stepped in to help/finish.

The finished products. William's is the yellow and black one and Clark's is the American flag one.

We finished the cars just in time. Actually, we were a bit late, but we figured we'd just be the last ones to be weighed in. Both looked great and I got a new corded drill to aid the axle prep! I love power tools more than my husband! (Probably because I use them more often!) The boys and cars did great! I couldn't have scripted the outcome more perfectly! William won 1st place for the Webelos (not counting the 2 cars that won first and second overall) and Clark won 3rd place over all. It was perfect because both boys won several races, but Clark won more. Both were sincerely happy for each other! And so were we! Whew!

The excitement of winning a trophy! Always with a flare for drama!

Well done!

A little toned downed, but equally thrilled!

Brotherly love competition!

p.s. Yes, we took THE trip! Details to come as soon as I/we recover!

Wishes Do Come True

On Friday afternoon, Make-A-Wish Foundation threw a party at our home to officially grant William his wish! What an amazing organization! He made his wish back in September right as we were finishing treatment and planning on a life of remission. He is a huge Harry Potter fan and wished to go to Harry Potter World/ Disney World in Orlando, FL. The plan was to go during Spring Break, but in December, under advice from our doctors, we decided to put a rush on his wish in an effort to make sure he got to enjoy the trip. So we have carefully calendared. Since his chemo and recovery are fairly predictable right now and he isn't experiencing too many "unexpecteds" at the moment, it all makes sense. His chemo will be delayed a week in hopes that he'll be at his peak of feeling great. We are so excited, but what I love even more is the fact that my kids have no real idea how amazing this trip will be. I just keep thinking about the 75+ degree weather right now while I'm suffering from a case of "wimpy Californian" during the few weeks of actual winter weather around here.

Some of the highlights of the trip will be a limo ride to and from our home and airport, 24 hour, all-you-can-eat-ice cream parlor at our resort. (Our resort is called "Give Kids the World" and it is a resort only for Make-A-Wish kids and their families.) And of course, all the fun a kid can pack into a week with tickets to every attraction in the vicinity.

We are so grateful to the generosity of the Make-A-Wish Foundation, the many people who donate money to the organization to make these wishes a reality, and their amazing team of volunteers!!! Thank you! Thank you! Thank you! We can't wait to post pictures of our trip!

In other news, William had a pretty uneventful week. He is not following his trends with his counts as he seems to hit an ANC of 0 a few days sooner than the previous chemo cycle. This week he seemed to stay at 0 a little longer than before, but he's staying out of the hospital and we can't ask for much more. Besides, I figure the sooner he cycles down, the sooner he cycles up and then he has more time feeling good while he waits for the next chemo cycle to start. Right? It makes sense to me when I don't try to factor in the rest of the what ifs. He received blood and platelet transfusions on Thursday which helped give him a boost of energy for Friday's Wish party. We are hoping the TPN and lipids are working their magic with his weight. He's had some aches and pains in his abdomen this week and tells me it's not nausea or gas. He isn't requesting pain meds and he says it comes and goes quickly. This makes me crazy. I try not to let my anxiety get the best of me or let my mind go to places it shouldn't, but the thought of the cancer speeding up it's growth is never far away.

William and Clark are gearing up for the Pinewood Derby this week. It is mild torture trying to get 2 cars done and then try to figure out how we are going to manage the emotions if one car ends up being significantly better than the other. Ahhhh. And we are cringing for next year's races because the twins will turn 8 right before the Derby and we'll have 4 cars to make!

Back on the Weight Wagon

Chemotherapy went as planned---Monday thru Saturday. However, he came home with a new appendage of sorts: TPN and lipids (I.V. nutrition). He'll be hooked up to pumps for TPN and lipids at night for 12 hours to help give his body a boost. This is all a result of his weight hitting an all-time low: 49 lbs! He was about 64 lbs. and 1.5 inches shorter a year and a half ago at original diagnosis and he's always struggled to get back up to that weight. Weight and appetite loss are common side effects of radiation and chemotherapy, but he just can't afford to fluctuate down anymore, especial when he's lost almost 25% of his already thin body weight. At dinner he said, "Why can't there be more commercials about how to gain weight? Everything on TV is about how to lose weight. That doesn't help me!"

Today's appetite was pretty small. One of the important things with TPN is to keep him eating by mouth. His body can only get the I.V. nutrition for so long before it starts taking a negative toll on his other organs. He's felt a little nauseated from time to time, but we are trying to wean off the Zofran if possible. Tonight as I was saying prayers with him, he squeezed my hand and said he needed a bucket. Luckily we keep one right next to the bed. He threw up all of what little dinner he ate 2 hours earlier. After getting him cleaned up and tucked back into bed, he told me how tired he is of all this. I told him how much I loved him and how strong and amazing he is and that his Heavenly Father loves him so much and knows how hard this is for him. He continued to smile. I told him he was a golden warrior and he said, "Thank you for saying that because I feel like I know I am." Oh, how I love that big, strong spirit in that little boy body.

They Made It To 7!!!

Nathan                                                    Cameron

Seven years ago, your birth ended my 6 weeks of hospital bed rest. I haven't rested since! Having twins is such a joy and to watch two little people be so alike and different at the same time is amazing. Just when we think we have you pegged, you switch it up on us. You two boys keep us laughing at all your silly antics. We love how sweet and tender you both can be and rough and tumble the next moment. Cameron, your agility and carefree personality keep us on our toes. Nathan, your deep thinking and memory for numbers and details remind us we're getting old. We love how you each are developing individuality, but occasionally want to still dress alike to trick your teacher! We love watching you both become excellent readers and be avid and imaginative Lego builders. Your appetites, especially you, Cameron, are making me nervous for the teenage years if this what it's like at 7! We are so glad you are each a part of our family. We love you!

Happy Birthday to my most favorite set of twins!

Cameron and Nathan! You made it to 7!

Make Today Count

Quick Recap of the holidays

•  Round 4 or 13 of chemotherapy (depending how you count) the week before Christmas
• Home Christmas Eve morning and William was so excited to be home, he called as he drove into the neighborhood to have everyone come outside to be his welcoming committee. Love it!
• Relaxing Christmas day. Attended church, opened presents, ate good food.
• Gift highlights were Legos. What else do boys want/need? And the tetherball that I’m proud to say Lisa and I made by pouring concrete in an old tire. Actually, I poured the concrete and she supervised and took pictures of who dressed in the ugliest grubbies. Everyone needs a friend with whom to pour concrete, right?
• My parents and brother arrived the day after Christmas and stayed for a week. Wonderful. Filled our buckets.
• Another brother and sister and their spouses and children came to party Thurs.-Sat. to make fun family memories and celebrate my mother’s 60^th b-day. Good times!
• Slept in. Got up early M-F for 2.5 weeks to be out the door by 7:20am for abdominal radiation.
• Blood and platelet transfusion gave William an extra boost despite his ANC hitting 0, but it didn't stop him and all the uncles/grandpa and boy cousins from attending a Kings vs. Bulls NBA basketball game that same evening to watch Jimmer. He did go wearing a mask and hand sanitizer in his pockets. Hospital admit averted. Whew!
• Celebrated my mother’s birthday on New Year’s Eve at a bounce house gym. Debateable whether the children or adults had more fun. The adults came away with more injuries (always the competitive Bennions). William engaged in more physical activity than I’ve seen in over a year. Bounce house jumping should be prescribed medicine for cancer kids!

We’re getting back into the swing of schedules and unpredictability. Last weekend, William experienced some intense abdominal pain, but a little morphine seemed to do the trick. This can be a radiation side effect, but in the back of my mind I always wonder if the tumors are growing. Tuesday, while at the clinic right after radiation, the pain started again. Of course I cleaned out my purse of his pain meds that morning. The nurse gave him some Tylenol and he promptly threw up all over himself and soaked everything he was wearing. Then he declared he felt much better! I hardly flinch at vomit anymore. Ahh, the things that change us.

The significant event was Wednesday's CT scans to assess the progress of tumor growth. Good news. The tumors appear to have responded and decreased in size. This gives us two options: 1) continue with the same chemo regimen of Etoposide (VP 16) and ifosfamide until the tumors stop responding or 2) switch to temozolomide and irinotecan, two chemotherapies his body hasn't been exposed to yet. The doctors will discuss the options and let us know what they recommend when we show up for admit on Monday morning. The upside to option 2 is the temozolomide is an oral pill and the irinotecan can be given outpatient. Otherwise, we’re just planning on a M-Sat hospital stay this week.

I recently read the following quote by Pres. Thomas S. Monson on another blog of a family dealing with cancer too: “Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present.” Ryan and I have discussed at length how to create more meaningful relationships and memories as a family. We want to make each day count. Taking the idea from this other blog, I planned a Family Home Evening lesson last week on this topic, Make Today Count. We discussed and listed many things we can do as a family each day to make the days better. Some things are daily activities such as family prayer and scripture study, speaking kindly, serving one another, saying “I love you” often, and giving lots of hugs. Other things are activities we want to increase like going to the beach, family bike rides, playing board games. Some things are easy and are already part of our regular routine, but others will take daily reminders. Our hope is to strengthen our family through this trial. We know good comes from adversity, but it’s not always immediate or automatic. All things worthwhile take hard work and patience. But at the end of each day, no matter how stressed we feel, how cranky the boys are, or how physically and emotionally exhausted we are, I hope we love each other a little more because we made today count.

Blog post to come soon. Things are fine. I do have updates. I haven't abandoned the blog, but I am currently valuing family time, daily chores, and sleep more than the blog. Go figure. Happy New Year!