Fly Ball Birthday

When Randy found out that there was a Seattle Mariners game on Caden's birthday, we all decided that it was the perfect actual-birthday activity.  Caden said that's what he wanted as his birthday gift.  They went on together and got tickets.  Little did we know, the seats would end up being a tender mercy from our Heavenly Father.

 We got there in time to see the Mariners leave the field after practicing, and the Oakland A's take the field to warm up.

 Our seats.  Row 12, right behind Home Base.

 The best seat in the whole place-- between my two men.

 All-Star Game 2001-- The year the most amazing baby was born: Caden Randy Dirks!

 30 minutes into the game, the most amazing thing EVER happened: a fly ball hit by the A's Healy (the same name as the surgeon that has saved Caden's life three times) basically fell into Caden's lap.  It flew back, hit the wall behind our heads, fell to a group of people clamoring to catch it but ended up being launched back into the air, flew between the hands of the people behind us, hit Caden's seat, and rolled into his awaiting hands!  It CAME TO CADEN!!!  Not to Randy, not to me, but to Caden alone.  Truly, it could have easily been caught by many different people, but it ended up at Caden's feet.  On his birthday.  I was telling everyone around us that it was his birthday.  Tears could not be stopped. 

"Oh my gosh, I am shaking!"  He was beaming!!!

And then I captured this smile...

 And I literally swooned.  Allll the heart eyes!!!

The night was made better by the WIN of our Seattle Mariners.  The A's had bases loaded, Three balls, Two Strikes, and Two outs.  If they would have gotten the run, we would have gone on to the 9th inning.  But they held them off and WON THE GAME ON CADEN'S BIRTHDAY!!!!!

 It's hard to see, but the screen below Safeco Field says Mariners WIN!!  I missed the Fireworks letting the city know we WON!!!!!

We hung back a bit after the game, taking it all in.  This was the last site we got to see.  I cannot believe he got that ball!!!!  On his BIRTHDAY!!!!  We were meant to get those seats!!!

It was the perfect end to the perfect weekend.

Happy 16th Birthday, Caden!!!

Turn off, what?!

I have just a few minutes before Caden, Randy and the boys arrive here at the Ronald McDonald House, so I can't write all about Caden's birthday party night, but I do have to write about my blunder.  Truly, if I didn't have Randy, I don't know how I would survive in this world.

Caden and I arrived at the hotel in time to check in, get the rooms situation straightened out (more about that in the birthday post), get the snacks up to the right room, order pizza, and grab it before Randy arrived with his friends.  When we arrived back with the pizza, we were both super excited to see that they had arrived before we did, and anxious because the pizzas had taken 10 minutes longer than they were scheduled to.  Here is where my blunder began...

7:12pm-  Arrive at hotel with very hot, very fresh pizzas.

Get out of the car, try to lock it with the handle lock.  Won't.

Lock the car with the key faub.

Notice that we left the hotel key in the cup holder.

Unlock with the key faub, grab the key, notice that the front dash is telling me that the car key has left the vehicle.  Mock the car, because, Duh, we are leaving the vehicle!!

Try to lock the car again with the handle button.  Nope.  Use the key faub.  Run inside for FUN!!!

Have pizza.

Randy and Stephanie run across the street to grab Caden a swim suit from Old Navy while boys finish eating.

Swim until 9:15pm.

Ice cream and singing until 10:00pm.

Leave the boys in their room, telling them to be quiet, lights out at 11:00pm.

10:35pm- Randy says that he's going to go grab his own pillow from the car.  I ask him to ask the front desk if they have any ear plugs.

Randy comes back about 3 minutes later, asking me where my keys are.  They're upstairs in the boys' room...why?

I had left the car running!!!!

This is where technology comes back to bite me.  I keep the keys in my pocket the entire time with this car.  It does not have a place for the key to even be inserted!!  In my anxious haste to get the party started, I had forgotten to push the button to turn off the car.  And that, my friends, is the wrong way to use gas.  Three hours!  Sitting in the same spot out front.  In a Diamond Elite Parking Spot- saved just for use of the frequent travelers.... that don't know how to turn off their car.

As we were getting into the car this morning, Randy said, "Oh, look you have gas this morning!"

Oh, how I love my Mister.  He saves me on a daily basis, I tell you.

Caden Dirks: 16 Years Old

Caden was pretty disappointed that they wanted him to stay in Seattle for another week.  He asked me why I was so nice when we got the news.  It's hard to explain that, while I was super disappointed that he wouldn't be home for his birthday, I understood why they wanted him close.  Sometimes safety is not convenient.  While I do wish we could have come home earlier, I am SO glad that we were able to give him this unforgettable birthday party in Seattle.  It was better than we could have ever imagine.

 Because we couldn't house everyone in the RMH, we used some of Randy's hotel points and got two hotel rooms.  When we arrived, they put us in two rooms on the same floor.  However, it was discovered that they hadn't given us the correct rooms-- we needed one of them to have two Queen beds, and a pull out couch.  After a tense meeting with the hotel manager, they were able to bump another guest to a smaller room, and give us the bigger room.  After all, that is the reason we drove 20 minutes North-- they were the only hotel that said they could guarantee us this room!  When we walked into the newly remodeled room (it still smelled like fresh paint!) Caden exclaimed, "THIS. IS. AWESOME!!"  Hearing his joy and excitement after so much disappointment and loneliness for the last month was like sunshine.  Little did I know that the night would get better and better.

 Since we were going to have 6 teenage boys (it ended up only being five.  Missed you Spencer Hammond!) staying overnight, Caden and I did a little shopping for snacks.  I'm pretty sure we bought all of aisle 6 at the Lynnwood Walmart.  And, yes, the boys opened every single thing.  That alone made me super happy.  Prepare yourself, I am going to be effusive in my emotions.  It was an incredible night.

 I did get pictures of them, but Randy and I tried to retreat, giving them their own space to party.

 Even in furthest seat, I felt the happiness of friends coming together after a month apart.  The boys may not have cared, but knowing what Caden had been through, how separated he felt from life, it was so good to see him smile, and smile, and smile.  The laughter is always what gets me.  It felt as if the laughter wrapped around my mind, erasing all the hardships we'd endured.  Even if this was all that we did for the party, it would have been enough.

While Randy was grabbing some stuff from our room, I stopped by the kiosk of travel pamphlets, looking for ideas for Saturday.  I was tempted to send this out to the Mom's, asking if they would be OK with us taking them to "the most unforgettable party experience ever!"  I forgot to, though, only remembering about it when I downloaded all of my pictures.  Weird that this is our world now.

We really tried to stay back from their fun-- parents can be such a buzz-kill.  However, I couldn't resist checking on them.  I just wanted to watch Caden.  When we walked in to find them playing Chicken, I almost started to cry.  It was so startling to see Caden playing so hard during cancer treatment.  I had told Randy that I just wanted a picture, but ended up staying for a few minutes.  I just wanted to revel in his strength.  And the laughter.

 And then Caden moved to the bottom position, and my heart burned with pride.  No way would I have ever guessed that he could have so much strength and stamina after a month of treatment.  To others, this would not be such a big thing.  But witnessing what I have, and knowing what I know, this felt like the best thing in the world.  My heart was so full the entire time.

 Above, he's supporting the tallest boy of the group-- his closest friend, Zachary.  I cried at this, to be honest.  The boy that once was the smallest/shortest of the group (but is now pretty evenly matched!) is supporting the tallest.  

"Happy Birthday, Caden!"

 (L to R) Zachary Graves, Mason McShane, Logan Powell, Zachary Bagley.  Spencer Hammond had a track meet, so he wasn't able to attend.  They made sure to let him know he was missed, sending fun texts, pictures, and telling him they felt the "Ghost of Spencer" all night.

Again, if this was the only thing we did, it would have been enough.  We left them at 10:00pm, telling them to be quiet.  It was borderline threatening, but in a cool-parent kind of way.  They watched the rest of a Star Wars movie, getting to bed just after 11:00pm.

Zach Graves had a Lacross tournament in Seattle on Saturday, so we left the hotel at 8:30am, meeting his dad at 9:00am.  Then we headed into Seattle, since the weather was surprisingly nice.

 *Notice that Caden is not the shortest.  Looking at these boys, you'd never guess that one of them is fighting for their life. 

 The weather was projected to be rainy, but ended up being quite nice.  Due to this, there was NO LINE at the iconic Seattle Great Wheel.  Watching Caden take a selfie with his friends was another moment that my heart felt full.  This was a moment he wanted to capture, and savor forever.

  Little did we know that the boys that don't look as enthused in this picture are the ones that have a fear of heights.  This was not disclosed until after we started to move.  I felt like crap, knowing they were too nervous to tell us.  They both said that it was better than they expected, but they didn't look up much.  Oh, and because there was no line, we were told that we'd go around 3-4 times.  Not to worry, they let us off after FIVE rotations.  Any other time, this would have been lucky.  These boys were probably praying to Heavenly Father to LET THEM OFF!!  He has the most amazing friends to participate in an activity that seriously scares them, because it was what Caden wanted to do.

 The luckiest parents in the world!

 We spent some time shopping and just looking through the cool shops downtown, before heading back to the Ronald McDonald House for some lunch and last-minute fun before heading home.

 We ate leftover pizza, and enjoyed the warmish weather.  Once again, we kept ourselves separate, giving them space to be friends.  But, I was still the creepy mom that took pictures from inside.

 Walking from House C to House A.  Randy and I could not get over the fact that Caden is not the smallest one anymore.  Caden is thriving, like a normal teenage boy.  It feels amazing.

It was nice to show them around, pointing out all of the many blessings offered to us by this amazing charity.  We crammed as much as we could into the last hour we had, even allowing the boys time in our room while we relaxed in another part of the House.  It was hard to say goodbye, but easier knowing that we'd be home in just a few days.

It's true what they say, "Friends make life bearable."  While his birthday didn't go how he originally wanted, I believe it turned out much, much better.  It is the most amazing thing knowing and witnessing my son, The Boy in the Bed, becoming a Man.

Happy 16th Birthday, Caden!! 

Diversions

Randy was needed for an appointment in Bremerton, WA yesterday, so he came up for a 'visit.'  We have not been laying idly by- oh, no my friends- we have been playing every second.

He arrived on Tuesday afternoon, just 45 minutes after we were released from the hospital.  We jumped in the car for some hamburger lovin' at Red Robin.  As soon as we realized it was across the street from the movie theater, we decided to go see Guardians of the Galaxy, Volume 2.  Did the fun end there?  Don't you for a second believe that it did; we drove another 20 minutes North to ColdStone Creamery.  I have found the ice cream my soul loves: Mud Pie Mojo with Cake Batter ice cream.  Oh, My.

While Randy was at his appointment on Wednesday morning, I cleaned our room top-to-bottom while Caden worked on his school work.  As soon as we could, we headed for a few hours sightseeing... at Woodland Park Zoo.  We have seen signs and commercials for it for the past three years, but he's never felt well enough to go.  Combine that with Seattle's unpredictable rainy weather, and you have even less days where the stars align to allow us to go.  Yesterday could not have been any more perfect.

As we were getting into the car, I noticed my reflection in the window.  Black shirt with a glistening white spot of bird poop.  Awesome!

Randy is up in our room working, while Caden and I use the computers downstairs.  Caden's searching out possible Party ideas for tomorrow!  I've already gotten our room ready for the weekly inspections (they go into each room once a week to ensure that things are clean.  You better believe I take pride in how perfect our room is each week), cleaned out two dishwashers, and filled one of them to capacity for another cleaning session.  I love being able to help clean here.  I don't like cleaning out my own dishwasher at home, but I enjoy cleaning them out here.  Such a blessing to be able to help.  I have been able to take at least 30 minutes each morning to help clean the communal kitchen area.  There is always work to be done with 35 families living here, using the same four sinks, two dishwashers, and everything dish/utensil you could ever need.  I also take time after loading my laundry to clean the laundry room.  Again, there is lots of work when we all use the same 6 washers/dryers.  Some people aren't as meticulous as I like to be.  I understand that I am a freak, but I do like being able to help keep the place tidier when I am here.  This place is an incredible blessing, the least I can do is keep it a little cleaner, to show my appreciation.

I have really enjoyed Randy's diversions from our lonely, boring day-to-day "schedule."  He always makes everything better.  5 days and counting....

Increase week 4

We got some  news today that was not completely unexpected, but did take me by surprise. They are going to increase his dose today, incrementally, to get him back to the normal Study rate. Since the reason for this trial is to monitor how safe it is to administer, I knew we would get back to the 2- hour infusion rate at some point. I just didn't think it would be on week four. So, for the first 30 minutes he'll get his recent dose of 50 mL's per hour. Then, for the next 30 minutes he'll be bumped up to 75 mL's per hour. At hour 1 of the infusion, as long as he is doing well, they will increase it to the 100% rate of 100mL's per hour. They could not answer our questions, like...

If I have a reaction, will I be done forever?

Will they start at the higher dose of 75 next time, or skip right to the 100 mL's?

I brought a quilt to hand stitch the binding, but I don't think I'm even going to pull it out. If anything happens, I want to be ready. It's not a chaotic worry, nor even too scary, but it is not peaceful right now. My anxiety is elevated enough to wish they had a treadmill in this room. I want to run.

Update:

He did it!!! All is well. They will most likely take him back to the original 2-hour infusion next week! I sure hope it goes as well as the last three have.

I'm the luckiest girl in the world!

Days and days

We have less than two hours before our countdown becomes 8 days until we get to go home!! The novelty of being in Seattle has well worn off by now. We talk often of wishing we could be reunited with our family. We try to get out at least once each day, but a majority of our day is spent in our Ronald McDonald House room. I love this place for the blessing it is, but I am sick of it, too. I can't wait to leave this place behind. Hopefully for the last time ever.

Caden has still been working on his homework. He checks his school app multiple times a day, making sure he gets everything finished before going back. He makes me so proud. We also found a new hobby-- Ping Pong. We haven't been doing much to try and "win" against each other, but we have gotten pretty good at volleying. Our current high is 72 volleys without it going off the table. It has been fun to challenge ourselves. Caden has gotten really good with his left hand; I have gotten really good at keeping it pretty much dead-center on his side, making it easy for him to challenge himself. We have been given the OK to keep the paddles and ball in our room-- they rarely have requests to use the table. Honestly, most families here have kids five and younger. Not many kids Caden's age, unfortunately. It would be fun seeing him play against someone else. It's been fun playing together, but I wish he could socialize with others his own age. 8 days, 1 hour, 35 minutes...

I have almost finished four quilts since coming to Seattle.  I am very happy with how they have turned out. Quilting has given me something to do, and beauty to create. It has been really good for me. Each infusion after the initial one, I've taken a new quilt to hand stitch the binding. This Tuesday will be no different. A friend just had a baby girl, and I just happen to have a girl quilt started. I'm so grateful I have had this hobby to do. It feels like service, but has been more for me than those I have made them for. A blessing to make, a blessing to give, a blessing to the one that receives it. Love it!

 I made two of this one.  One for my cousin, Erin, and one for Kimberly.

 My niece, Audrey.

 Unknown Baby Girl.

 Hand stitching the binding while at the hospital.

We also have everything purchased for Trek at the end of June. I sure hope we can make it work, since he'll be in sesttle for day number one. We'll have to try and catch up to them on the trail. Since he's been registered for EFY but been unable to actually attend, I feel as if I would drop him from a chartered helicopter before I would keep him from going. I really hope he can go, since he is so looking forward to it.

Caden has also been having fun making all sorts of paracord crafts. He was taking requests from family members after making a few testers.  He's even been challenging himself to make up his own designs. I got one of his originals. I love that he went looking for his own craft while I was looking for fabrics to create my own. We may have to stay in our room, but we've been keeping busy. Craft or go crazy-- we choose crafting.

One of the biggest differences between this stay at RMH and the last two is that Caden is actually eating this time. It is such a pleasure watching him continuously going to his snack drawers. It has been amazing watching him devour all of his snacks. How grateful I am that he feels well enough to eat. The amount of recycling that has come from this room because of all of his boxed goodies and Propel water bottles has brought me happiness. It feels amazing watching him eat and feel so well. How grateful I am for this immunotherapy study!! I truly hope with all of my soul that it is working.

8 days, 1 hour, 24 minutes.....

We went on a 1.5 mile walk today, enjoying the sun, nature, and exertion. It was such a beautiful thing to remember that 3 years ago today was his first major surgery-- theday we first considered him cancer free. Three years ago exactly, this very hour, we were taken back to see him for the first time in 12 hours. 3 years ago exactly, this very hour, our son opened his groggy eyes to look into ours, and stumbled over his anesthesia words to say, "I love you!"

I'm the luckiest girl in the world.

Confirmed

We got  word yesterday from our Study Nurse: Dr. Hawkins and Dr. Park (Main doctor at SCH over this Study) want to keep him close for 30 days- he will be released the DAY AFTER his birthday. We are sad, but know it is for his safety and health that they do this, so we can't be mad. Just really, really bummed.

So, we have plans to bring four of his closest friends to Seattle on the Friday before his birthday for a celebration they will never forget. When I approached Caden with this idea, his first response was that he'd rather have his siblings here. Man, I love this kid!! What 16 year old boy would choose his family over a night like this with friends?! But I convinced him that we could party hard with our family when we got home, that he would really enjoy a night out with the boys. So that's what we're gonna do! We're asking locals of the must-do's, and taking any and all suggestions. This is gonna be BIG. Only the best for The Boy in the Bed!

The countdown begins: 12 days, and counting...

Immuno Week 3

Because this is a Study/Trial, there are very specific parameters that they would like you to keep to.  Due to his reaction that first day, they decided to do twice the Hydrocortisone (and twice the dose rate) before the infusion on Week Two, hopefully helping his body accept the drug, and lessen the chances of reaction.  Since things worked so well with Week 2, they decided to take they Hydrocortisone back to the normal dose for Week 3, to get us back on track with the Study parameters.  Like Week 2, things went GREAT.  He didn't have a single reaction.  In fact, it is as if nothing has even happened these last few weeks; like they are infusing him with saline, kind of nothing.  It is a blessing, and a curse.  It is so much easier staying close to the hospital when I know that he's extremely sick.  With nothing out of the ordinary,  it makes for very long hours, days, and weeks kept stuck in Seattle.  But I can't complain...because I know how he's felt in the past when they were pumping stuff through his veins.  I'll take bored to tears any day over scared to tears!!

Things are going so well here!!!  We'll get his CT scan on June 5th.  If the results show the promising effects we are hoping, praying, and wishing for (expecting, really, from all of their talk) we'll have his 8th infusion on June 6th-- and our weekly 4-hour infusions (which will amount to about 6 hours of total hospital time) with CT scans every 8 weeks will begin.  For Two Years, if Heavenly Father sees fit.

Science is even more amazing when you get to see it first hand.  We are participating in ground-floor miracles here.  Awesome!!  

Interpretation

When we were accepted into The Study, they asked us the last day that he'd taken a chemo pill.  I told them that he had taken one the night before we found out the news, so that was the 4th of April.  They logged it, telling us that they would find out the exact date that he could begin.  I was certain it was going to be the 19th, since that was two weeks since the first day he was without chemo in his system.  My reasoning was that he'd taken a pill on a Tuesday, so Wednesday was the first day off the pill, putting two weeks on a Wednesday.  So, when they called me on the 17th saying we were going to start on the morning of Tuesday, the 18th, it was kind of a scramble.  The Study's interpretation was this:  His last pill was the fourth, add fourteen days, he'll begin on the 18th.  Two different interpretations of two weeks.

Because of these two different views of time, I have asked for a specific day that we'll be released from our one month, 1-hour radius leash.  Some would view one month as 4 weeks.  Since today is considered week 3 (Week one was day 1, week two was day 8, week three is today), week 4 could be when we get to go home, making it next week, May 9th.  Others would view one month as 30 days.  If this was the case, we'd be released in two weeks.  One would get us home before Caden's birthday, the other would get us home just after.  I know you can guess what my preference would be.  She said she'd find out for me today.  I have asked her each time she's come in to check on Caden if she'd found out the news.  I won't rest until I know when we can go home.  It will make it easier mentally knowing the countdown days we have left.  I'm hoping for seven days!!!