Some thoughts on ‘beating’ leukemia

A few weeks ago, I wrote something titled,

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If I’m being honest, though, it felt weird to write that. Mostly because it’s only semi-accurate. A more accurate title would have been something like,

Screen Shot 2015-08-05 at 5.23.11 PM

Not quite as catchy!

You’ll notice the second version omits the word “beat.” I guess I put it in there the first time because that’s the easiest and most concise way to communicate that Trystian has finally – FINALLY – finished his prescribed treatment for Acute Lymphoblastic Leukemia. He’s still alive, and there’s no trace of the cancer, so … yeah, he “beat” it.

But the word implies some finality. And since we’re being honest here, it needs to be said: There’s very little that’s final about where Trystian is at.

Don’t mistake my tone; I’m so grateful that we’ve made it this far, and am excited for what the future holds, especially as the poison that’s been pumped into his body for all this time works its way out of his system. (I’ll come back to this in a few minutes.)

But, being a realist, I’m also nervous for what lies ahead.

One of the challenges we’ve had is communicating the unique issues that come along with A.L.L. to people around us. One issue has simply been getting people to understand how long and grueling the initial treatment is; I can’t tell you how many times over the last two years that someone said, “Isn’t he already in remission?” or “Wait, he’s not done with that yet?” since most people who know something about cancer know that the treatment course for most cancers is measured in weeks or months and not years.

Beyond that, there are lingering issues that have to be worked through. Foremost, of course, is the chance that Trystian could relapse. He’ll be checked monthly for the next year for the presence of cancer, and while all signs are positive – he didn’t relapse at all during treatment, and actually had relatively few hospital stays – the odds of relapse are significant enough that the surgically inserted port through which he received his chemo infusions won’t be removed for six months.

Then, there’s the collateral damage to his body.

Trystian is suffering from neuropathy, a condition brought on by taking the chemotherapy drug vincristine. There’s some leg pain associated with it, but most significantly, his muscles are weak and underdeveloped. He’s receiving physical and occupational therapy once a week to combat the effects, such as learning again how to walk heel-toe like the rest of us (he wants to walk on his toes):

He also can’t hold a pencil properly because his grip just isn’t strong enough. The condition is reversible. But it’s going to take some time.

Thankfully, we haven’t yet seen any significant developmental delays – heading into kindergarten this fall, he knows his letters and numbers, his vocabulary is excellent, and his capacity for creativity sometimes leaves me in awe. But there’s still the possibility that “chemo brain” crops up as he begins to study more rigorously.

Long-term, treatment for A.L.L. has been known to cause heart damage, sterility and other problems. One study has found “that the health problems of these survivors increased steadily over time, even 30 years after their treatment.”

Of course, there’s also the emotional toll this has taken on myself, Sarah, and Trystian’s brothers. I worry about his older brother, whose occasional demonstrative outbursts reveal just how much he’s carrying around in his little heart that he doesn’t really talk about. I worry about his younger brother, who has so often been left to fend for himself.

As a parent, these were the things that were on my mind when I wrote that my son “beat cancer.” (And I’ve talked to enough parents of cancer survivors to know that I’m not unique in this regard.) As Sarah puts it, “I don’t feel done – I feel like we checked that part of fighting cancer off our list.” Or, to make a sports analogy, I feel like the game’s not over – we’re actually getting ready to start the fourth quarter with a two-touchdown lead. We’re in an awesome spot, but there’s still a ways to go to see this thing through.

I don’t bring all this up to diminish Trystian’s accomplishment. In fact, it’s actually quite the opposite: These future challenges underscore and emphasize the need for us to stop and celebrate this milestone!

For three and a half years, Trystian has had needles stuck into his chest and been pumped full of chemo and steroids and antibiotics. As you can imagine, there were plenty of shitty days – particularly early on (during delayed intensification) when his hair fell out, and in the last year, as he has reached an age where he can express in no uncertain terms that he is very, very over of all of this crap. But most of the time, he graciously complied with everyone’s requests. And through it all, he continued to laugh and smile and just be the sweetest boy you’d ever want to meet.

And that means something. A lot, actually.

So, here’s what we’re going to do!

Thanks to the incredible generosity of 30 or so people who donated to GoFundMe – seriously, words can’t express how humbled I am by their gestures – we’re going to be able to take a real family vacation that doesn’t involve cancer. This actually will be the first time with the five of us; our youngest was three months old when Trystian was diagnosed, and he was just over a year old when the rest of us visited Disneyland for Trystian’s Make-A-Wish trip, so he didn’t go. And even on that trip, the effects of cancer were palpable as we pushed our 4-year-old around in a stroller. (Don’t think I didn’t want to punch every person who gave me a funny look right in the face.)

We’re going to pack up the car and take a road trip. First, we’re going to visit Coeur d’Alene, Idaho, and stay in a cabin on the Spokane River for a few days (again, thanks to the tremendous generosity of a friend) where we’re going to play in the water and take the kids to Silverwood Theme Park. Next, we’re going to drive to Missoula, Montana, and visit some friends from Camp Agape while doing some hiking and whatever else strikes our fancy. (There have been unconfirmed reports that a visit to Big Sky Brewing will be involved.) After that, we’re going to drive down to Yellowstone National Park and camp for a couple of days while taking in as much of what that park has to offer as we can. Then we’re going to finish it up by going back through Coeur d’Alene to spend some quality time with an aunt and uncle of mine we haven’t seen in a long time.

We are incredibly excited to be able to spend this time together as a family. There also will be a celebration with family and friends so that those who have been closest with us during this time can also share in our joy. We’re blessed to have made it this far, and we count it an undeniable victory that Trystian is still here and we’re all still standing.

Thank you for whatever part you played in the journey of the last three years, and please pray for continued healing for Trystian. We’re believing that the best is yet to come!


A new video of Trystian’s Make-A-Wish trip

Make-A-Wish took our footage from Disneyland and put together this beautiful video. Sarah and I cried. You might not. But you should watch it!

This is a good time to remind you that we are raising money to give back to Make-A-Wish so that other kids with life-threatening illnesses can experience a wish of their own. We’ll be participating in the Walk For Wishes; you can read more about what we’re doing here. We’ve raised more than $6,000, which covers about one wish. We’re going for $10,000!

A quick update, and a GREAT story

Sleeping it off after sedation.

Sleeping it off after sedation.

Trystian had his monthly clinic appointment a week ago, during which he was sedated and received a spinal tap to both infuse chemo into his spinal fluid and check the spinal fluid for the presence of cancer cells. He also had his usual bloodwork done to monitor his blood cell counts.

Everything is A-OK — cell counts where they should be, spinal fluid looking clear as it should. Thankful for that!

I also wanted to pass along a great story I ran across earlier this week. Take a moment and go read this, then come back.

One thing I know from experience: Such acts of generosity, while relatively small — really, it doesn’t cost that much to send a pizza to a room — brighten the lives of families facing crisis immeasurably. I can’t help but think back to all the kind things that people did for us while Trystian was initially. The size of the gesture wasn’t important; what mattered was that each gesture either made our lives just a little bit easier or added a little bit of joy to a joyless situation.

Both were (and continue to be) important. Thank you again to all of you who have (and continue) to support our family. And if you ever wonder, “Should I do something for (friend/family/acquantaince) who is struggling? I can’t afford much.” The answer is YES.

It means more than you can possibly imagine.

A Wish come true

Hey Walt and Mickey

Hey Walt and Mickey

As you might have gathered from our chronicles here, cancer sucks pretty much all the time.

There are moments, though, when living with cancer is less bad than usual. One of those times was last week, when Make-A-Wish made Trystian’s wish to meet Mickey Mouse come true with a trip to Disneyland.

I’m going to be honest: A trip doesn’t make everything all better, and you don’t really get to “take a break” from cancer while you’re there — Sarah and I were acutely aware of exactly why we were on an expenses-paid trip, and there were challenges with managing Trystian’s fatigue everyday — but the joy that being in the “Happiest Place on Earth” brought Trystian (and his brother, Joshua*) during what has been such a difficult year was absolutely priceless.

*We left Atticus at home, for reasons that I hope are obvious when dealing with a 15-month-old toddler. But he did get some awesome Mickey ears when we came back!

Here’s a rundown of each day, with galleries of some of our favorite photos.

Before the trip

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We’ve written on the blog about some of the pre-Wish activities, but we haven’t yet written about this one and wanted to make sure to highlight it. About a week before the trip, Trystian’s wish granters Lou and Lori met us all at Red Robin (on Meridian and 168th in Puyallup) for dinner to officially present Trystian with his Wish.

Red Robin (which we’ve been told is an awesome partner of Make-A-Wish) really pulled out all the stops. When we arrived, there were balloons at the table and 50(!) Hot Wheels and a gift card — presents for Trystian from the Red Robin staff. And he absolutely loved the cars.

Dinner was flawless as the staff — led by our server, Eric, who is spectacular at his job — bent over backwards to serve us.

Lou then presented Trystian with his going away gifts, the highlight of which was his new Lightning McQueen backpack, filled with all sorts of necessities for the trip: Coloring books, sunscreen, snacks, etc.

With only a week to go, we were pretty excited.

Day One – Travel

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As the black Yukon pulled up in front of our house, it didn’t take long to realize this was going to be a trip unlike any we had been on. A chauffeured ride to the airport? Yeah, that’s not a bad deal. Upon arrival at SeaTac, we were greeted by Lou and Lori, Trystian’s wish granters, and our own personal TSA agent.

Yes, you read that right.

Alaska Airlines — which was absolutely fabulous throughout, as you’ll soon see — checked our bags off to the side, after which time our TSA agent escorted us to the front of the security line. It happened so quickly that we were able to hit Wendy’s for some lunch before the flight. Trystian loved dancing to the live music and watching the planes take off and land from the atrium.

We made our way up to the gate, where we were boarded the plane before everyone else. Waiting for us was the captain’s first officer, who let the kids “fly” the plane for a little bit – complete with pushing a button that made a machine gun sound because who doesn’t want to fly a plane with a machine gun?

After taking our seats, we received a special visit from the captain, who bestowed a co-pilot’s hat on Trystian before getting on the intercom and informing the passengers that he had a very special co-pilot helping him make the trip to California. Everyone applauded as Trystian said, “Hey, that’s me!” On the flight, we were treated to whatever we wanted — and mom and dad might have had a well-deserved adult beverage.

On the ground, we picked up our bags, got our rental car, and drove to Disney’s Paradise Pier hotel. This was the kids’ reaction when they saw the view from the room:

It wasn’t actually Disneyland out there — it was California Adventure. Close enough.

We finished the night in the game room and then tried to get them to bed relatively early for the big first day at the park.

Day Two – Disney

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The big day! We kicked it off with one of the special events of Trystian’s Wish – a character breakfast at Goofy’s Kitchen, where you get visited at your table by a handful of Disney characters. Very cool, and it was our first chance to celebrate Trystian’s first birthday.

Yep — Make-A-Wish, first time at Disneyland and birthday all on the same day.

Once inside, we made our way to as many rides as we could, aided by a wonderful little thing called a Guest Assistance Card. It’s sort of like a Disneyland Golden Ticket: Show it to any cast member and get escorted to the front of the line. Seriously.

Now, before you get all jealous, remember that there’s a legitimate reason for having it. In the hands of any of us, we’d probably go on every ride in the park three or four times. With Trystian? There were many rides we never made it to, and the only one we went on twice was Star Tours. See, in the hands of a family with a kid with cancer, that pass afforded us the greatest luxury of all: Going slowly around the park so as not to wear Trystian out, something that was a constant battle even as he rode around in a stroller.

Thank goodness for the Make-A-Wish Lounge. It’s a room where Wish families can go to rest, and it was absolutely huge for us to have a quiet, air conditioned place to hang out for an hour or so.

Recharged, we went back out for some more rides. The favorite ride of the day? Splash Mountain. Make sure you look at the photo in the slideshow. Even though you’d never guess it from their faces, they couldn’t stop talking about how fun it was after it was over. Trystian wanted to do all the big boy rides, including Space Mountain, and he was awesome.

Corn dogs for dinner. This would be a recurring theme.

After picking up our Mickey ears, we went over to California Adventure for the evening. We had avoided it in the morning mostly because we wanted to do Disneyland first but also because the park had hosted the world premiere of The Lone Ranger — complete with appearances by Johnny Depp and the rest of the cast — earlier in the day.

A few rides (including Soaring Over California, which Trystian loved) and a visit to the Ghirardelli ice cream shop later and the night was complete.

Well, not totally complete. I had to go back into Disneyland to retrieve Joshua’s light saber, which I had dropped on the Peter Pan ride earlier in the day. I stuck around to watch the fireworks show over Sleeping Beauty’s castle, which is always incredible. It did not disappoint.

The rest of the family watched the fireworks from the hotel room.

Day Three – Disney again!

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Second (and final) day at the Disney parks. We started today at California Adventure, and Trystian was grumpy. His mood brightened considerably when we took him to the Mickey Mouse Clubhouse show first thing. Appearances by Sophia The First and Doc McStuffins were cool, but the highlight was seeing Jake and the Neverland Pirates.

Caught him dancing! Sadly, I also caught him picking his nose. Oh well.

After a little more time at California Adventure, we walked back over to Disneyland for Trystian’s second big surprise:

Mickey and Minnie Mouse spent 30 minutes with us, doing whatever Trystian wanted. He started by shooting bubbles at them, then decided he wanted to play board games. So that’s what Mickey and Minnie did: They played Clue and checkers.

If you’ve never been to Disneyland, let’s just say it’s hard to get more than 60 seconds with Mickey or Minnie. It was very, very cool.

As you can see from the video, Joshua is a pretty awesome older brother. He let Trystian have his time with Mickey and Minnie, and that was representative of how amazingly patient he was on this trip. Yes, he got to go to Disneyland, so it’s not like he really could complain. But it’s not easy having a brother with cancer, even in Disneyland. Trystian can be moody, ranging from happy-go-lucky to combative to obstinate, and through it all, Joshua (mostly) rolls with it. We had to remind him a few times that this was Trystian’s trip and that meant that he wasn’t always going to get to do what he wanted, but in general, he was very gracious. I was proud of him.

Because of that, we made it a point to do some things that Joshua requested. While he enjoyed hanging out with Mickey and Minnie, he had heard you could fight Darth Vader with your light saber, and that is what he really wanted to do. I mean, really … why hang out with a couple of cartoon mice when you can wage war on the Dark Side? So, after visiting with the characters, we sat in on the Jedi Training, which came complete with an appearance by Luke’s father himself, and although Joshua didn’t get picked to fight Vader, he had a great time, leaving convinced that the reason he wasn’t picked is because he already was too awesome with his light saber and Vader was scared.

After stopping for a family photo in front of the big Mickey, we went back over to California Adventure to visit Cars Land. That was pretty awesome! We finished the night out at there before saying goodbye to Disney for good.

Day Four – Universal Studios Pool Day!

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When Lou was talking about the trip with us, we knew were going to spend two days at Disneyland/California Adventure with a third day at another theme park. We ended up choosing Universal Studios.

Let’s just say it didn’t go well. It wasn’t anyone’s fault — it just so happened to appear that every tourist that wasn’t at Disneyland showed up at Universal Studios that day. It was a Monday, so I have no idea why that was, but the place was more crowded than Disneyland had been over the weekend, I think owing mostly to the fact that it’s comparatively small. The crush of people combined with not having the same privileges as we had at Disney — we had a “front of the line pass,” but it was the same pass that hundreds of other people had purchased, simply putting us in a shorter line for rides, but still a line — made it real rough for Trystian. It was at that point that we realized that the pass we had at Disney wasn’t just a luxury; it was a necessity for taking a kid with cancer to a theme park.

So, we just decided to bag it and head back to the hotel. It ended up working out great: The kids had been begging to go to the pool, so that’s where we spent the rest of the day before heading to Downtown Disney for Build-a-Bear — actually a dog and dinosaur — and dinner.

It was a bumpy start, but it actually was a wonderfully relaxing day when it was over. I remember thinking, before we left, “Really? Only two days at Disney?” But after doing it … yeah, two days was it. Having a third day where we ended up chilling by the pool was awesome, and we all enjoyed it.

Day Five – Shopping, the beach … then home

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Final day. We tied up some loose ends with some shopping in the morning — souvenirs for the kids, us, and family members. Joshua got a Lego set, the other thing he really wanted (besides the light saber), while Trystian got a Mickey-themed Pirates of the Caribbean set.

Checked out of the hotel, and made our way to Huntington Beach. Trystian said he wanted to see the ocean, and the beach was only about 20 minutes away from the airport, so we made it our final stop.

It was amazing. Might have been the best decision of the trip, honestly. Our only regret was that we didn’t make it a priority to spend more time there — we really only got about 90 minutes to enjoy the sun and the waves before we had to head to catch our flight. But they were 90 glorious minutes! If we are being totally truthful, the beach might have been the most fun Trystian had during the whole trip. Simple kid, that one.

We hit In-N-Out on the way to the airport — because of course we did — and were once again totally thankful for having been flown into John Wayne Airport. The security line was comically short, and the trip back was a piece of cake, as Alaska Airlines once again made us feel like royalty.

Lou was waiting for us at SeaTac, bringing one last smile to Trystian’s face.

We are so thankful for the gift we have been given. It was an incredible time as a family. Yeah, it was emotional at times — as I mentioned earlier, it’s hard for a parent to forget that you’re there because your child has a potentially terminal disease — but we wouldn’t trade this experience for anything. Such a special time.

Thank you, Make-A-Wish — and your partners, Alaska Airlines, Disney and Red Robin — for making this happen for us. We’ll be doing whatever we can to pay it forward for other kids in need of a Wish to brighten their lives!

One last thing. If you haven’t already invested enough time on this post, here’s a video I made with the pictures and footage I shot on the trip. I hope you like it.

‘Better, but not good,’ and a Wish

Trystian returned to the oncologist yesterday after week off from his chemo pills, and the news was mixed.

The good news first: His blood cell counts were up, which meant no transfusion and the requisite hospitalization. We certainly are thankful for that. The not-so-good news is that his counts aren’t up all that much — “better, but not good,” as his oncologist put it.

Because his counts are at least heading in the right direction, he’ll go back on a reduced dose of the chemo pills and be back to clinic in a couple of weeks. Honestly, all the tinkering with his medication is a little nerve wracking, but it is what it is. Like I said, we continue to simply be thankful that we haven’t had any major setbacks.

Back to good news for a second. The official countdown to Trystian’s Make-A-Wish trip has begun! We’ll be heading to Disneyland in about a month, and both Trystian and Joshua are incredibly excited. (Atticus is going to stay home – no sense in dragging a toddler who won’t remember anything all over the park.)

IMG_20130524_125259We had a visit from Lou Cutler, Trystian’s Wish Granter, about a week ago to start working out the final details. Lou delivered a countdown calendar that was made by his students at Pathfinder K-8 School in Seattle, as well as a few small Disney-themed gifts to brighten Trystian’s day.

Lou is a pretty special dude. He was recently featured on Q13 news for his annual Make-A-Wish fundraiser, in which he runs one lap for each of his years — that’s 62(!) laps this year. You can watch the video (which WordPress won’t let me embed) here. And if you’re not really the “video” type, you can read more about “Laps With Lou” in this story from a couple of years ago.

If you are so moved, you can still donate to Lou’s run! Do that here. Here he is with our kids and his partner Connie. We’re thankful for them.

Blood counts down, medication changing again

Trystian fountain

“Stop Mom! We need to look at the beautiful fountain.”

So, a month ago we let you know that Trystian’s oncologist was increasing his chemo intake in an effort to suppress his immune system a bit more. Well, we found out today that it worked.

A little too well, in fact.

His blood cell numbers were way down today, to the point that his doctor has taken him off his chemo pills for the next week and having him come in next week to be tested again. This is a pretty significant change — he normally would just be staying the course and coming back to the clinic in a month.

It wasn’t a huge shock to us; he’s been saying “my tummy hurts” for a week and has been getting tired pretty quickly lately. We knew something was up, just not what. Now we know.

Trystian also got an infusion of vincristine today, and he’ll be taking dexamethasone (a steroid that makes him incredibly moody) over the next five days. Those combined with the anxiety of waiting for next Thursday’s test results probably will make this a pretty difficult week. Prayer is appreciated.

The new normal

Doing normal people stuff in the midst of abnormality.

Doing normal people stuff in the midst of abnormality.

It’s been on my list of things to do for a while now to write an update on Trystian, and yet I have always seemed to be able to find some reason why I don’t have time to write. Funny how easy that is to do. I mean, don’t get me wrong — we’re busy. But if I’m being totally honest, there’s probably a bit more to it than that.

When I started this thing just a few days after Trystian’s diagnosis, everything was happening so rapidly. Within a few hours of the bad news, he was getting his first blood transfusion. The next day, he had a PICC line inserted, underwent his first spinal tap, and later, received his first chemo drip.

This was in the first 24 hours. As a parent, it was like trying to get a drink from a fire hose.

Because we’re so blessed to have so many people who care about us and our son, it was a little overwhelming trying to keep everyone up to date in those first few days. It felt like everything was changing by the hour, so we needed a reasonably efficient way to pass along information. I suppose we could have just used Facebook … but again, if I’m being honest, I really needed a place to be able to process my own roller coaster of emotions. At the time, I felt like I could talk to everyone and no one about how I was feeling, so I did what I do. I wrote, very publicly sharing all the things that I was having such difficulty talking about privately.

But at some point — and it’s really hard to figure out exactly when it was (I’ve actually thought about this) — doing these updates became less integral. At some point, we shifted from crisis mode to living-at-home-with-a-kid-with-cancer-OH-MY-GOSH-WHAT-DOES-THAT-EVEN-LOOK-LIKE???? mode to yeah-another-appointment-with-the-oncologist-yeah-he’s-doing-fine mode.

We (mostly) stopped worrying about death and (mostly) just tried to figure out how we were all going to live.

That meant living with cancer, which, of course, is super crappy. But you’d probably be surprised at how quickly that becomes rather mundane. It obviously has its awful moments*, and I do sometimes pause and reflect on the conceptual craziness of cancer, my son’s mortality, etc. But all in all, it just sort of is what it is. It’s our new normal.

*Holding your son while he goes limp after being sedated is one; giving your son an injection of chemo at home — in which you’re asked to put something into his body that is so awful they actually give you a haz-mat cleanup kit just in case you spill some on your floor — stands out as another; shaving your son’s head because his hair is falling out in clumps is yet another.

I’m actually really thankful for that, believe it or not. A person can only handle so much crisis, and because Trystian’s treatments have gone more or less as expected over the past 11 months, we’ve had the relative luxury of living in a way that is much more normal than the way many other cancer patients’ families are forced to live. We know others aren’t so fortunate.

This also has a lot to do with Trystian himself. He’s an amazing kid who faces every challenge thrown at him like a champ. Sarah has documented a lot of that stuff in previous posts, but the big takeaway is simply that whenever we ask him to do another stupid cancer-related thing, he usually smiles. Sometimes, when he takes his chemo pills at night, he’ll eat the pill and the dab of yogurt off the spoon, grimace as he swallows, then smile and say, “That was DEEEEEE-LICIOUS, dad!” Seriously, who does that? And his hair is growing back so beautifully. My head knows that’s just a silly cosmetic thing, but my heart appreciates it.

Lately, things have been slightly less normal. Trystian has been fighting some kind of virus for a while now, and it’s been screwing with his blood counts. (At least they think that’s what’s doing it. We can never be sure.) They’re getting close to normal, which surprisingly is a bad thing right now. The chemo pills he’s taking at home actually are designed to suppress his blood cell production — the idea is that if his body goes into full-blown blood cell making mode, it might start making the cancer cells again, too. So his oncologist has increased his home chemo doses to try and bring them back down. Please pray that this does the trick.

I’ll leave you with one more thing. This is a great story about a college basketball player who was diagnosed with A.L.L. (the same kind of cancer Trystian has) when he was 16, and is nearing the end of his treatment. He played with leukemia this past season as a freshman. It’s a tremendously powerful story, and provided some much-needed perspective for me. Although Trystian speaks well for a 3-year-old, he’s still 3, which means he doesn’t always express how he’s feeling very well — sometimes he says he doesn’t feel so good, other times shrieks in my face, other times he just punches his brothers. (Shrug.) Trystian also doesn’t really have any frame of reference for what things were like before cancer. Ray King can speak to that, though, and I have to imagine that the only real difference between him and Trystian is the ability to articulate the experience.

Although some of the details are different (Trystian wasn’t in as near as bad of shape as King at the initial diagnosis), the story paints a pretty similar picture to what Tystian has endured — it was completely bizarre to me to read King’s treatment protocol and know exactly what each of the drugs he takes are and what they do. So if you’re curious about the details that we might or might not have covered on the blog, this story is a good place to get a general idea.

The afternoon after, Ray has to miss practice to go to the UNC Pediatric Center for a checkup and his monthly injections of the chemotherapy agent vincristine. Every two months they add a spinal tap to check his bone marrow and shoot some chemo into it. In addition, Ray takes anywhere from 24 to 40 pills per night—methotrexate, 6-MP, prednisone, scepter. It’s maintenance chemo, not the stuff that made him throw up 100 times last year, but it’s still poison. On top of aerating his immune system, the chemo messes up his brain. He’s doing OK in school—three Bs and three Cs this semester—but Ray has trouble remembering his team’s plays.

Trystian takes far fewer pills (presumably because he’s smaller), but the protocol is the same. I hope you read the whole story. It’s long, but well worth your time.

Oh, and I dare you not to cry when you get to the story of his Make-A-Wish. I just read the story again. I knew what was coming and I still couldn’t do it.

Until next time (which hopefully won’t be another four months), here’s a video from this week as he plays with some toy tools that he got at the doctor’s office this week. You can see the band-aid on his back from where he got the spinal tap, as well as the port on the right hand side of his chest. He said he wants to build a bird house, and he really gets into character with the positioning of his jeans:

How is He?

A little update.

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Yesterday we started maintenance. I was surprised at the range of emotion this held. In order to do this we to choose if we wanted to keep Trystian to stay on a study or take him off. If we already decided why is this hard? Because at this point things change. The normal becomes randomized. He won’t get the same treatment as all other kids. It (for him) means getting more chemo than other kids in 3 other groups.

I am really having a hard time with it. He seems ok today. A lot of sleeping after treatment yesterday. He is actually getting less meds than he did in the last phase. It is all so weird to try and follow. We are given a a calender for every single day there is a battering of medications listed and doses. We were so excited to fins we will only be in clinic every-other week now. I feel totally deceived. We are in clinic only every-other week…true! We have just as much going on with all his meds though (more). He has at home for the most part only had meds 2 days a week. There are times when it is prescribed and we have to do more, but nothing like this. I cried because I became totally overwhelmed with the schedule. We also find out during this time if any of this is working. the time between the clinic visits and the lower doses are to see if his body will make healthy cells on their own or if his cancer is still ruling. FUN RIGHT?
photo  They gave us a finish date. AUGUST 1 2015. As long as we have no hang-ups. We are planning a HUGE celebration for this date. I work hard to protect Him. I believe he is doing well because Jeff and I work so hard to make sure he doesn’t know all the changes that have to be made to make this life work. The hurt that comes along with making these choices are so layered we have yet to get to the center. We never know we have another layer until it it heavily laid atop.

Friends have become a distant memory as some have crossed boundaries and insulted our choices. Family has drawn closer. Tempers are hotter and fuses are shorter. The ability to function each day depends on a moment. Never knowing where that moment is can be maddening. I think anger would be the honest overall emotion. He is angry a lot. We as parents are angry often. Our almost 6 year old has been a champ, but he knows. He understand things are never normal. He is still away from home as often as he is home. there are times where I am determined to keep him home and I am not sure they are always the best choice.

The ability to cry out to God has become my strongest. I cry out in fear and relief  I cry out in joy and thanksgiving. I know weird, but we have so much to e thankful for. We have a son who is trucking along. It sucks!, but he is still making it. I have a job I really enjoy. NO, I LOVE it. I find so much release and please in doing what I am sales and working with people. I am SO thankful for a boss who see’s through a different lenses and encourages me to take care of my family first and job second.

HOW IS HE: Taken care of!

HOW ARE WE? Scared out of our mind!

He is doing FINE

Fine is so relative and that is the truth. Fine is that answer you give that means I don’t really want to talk about it. It means I am doing really well with pushing down the hell of all of this and today I am choosing to keep this fake smile on my face. He hates it and we hate it and all around this phase SUCKS, but he is making it through and you know what? THAT is wonderful. We have each other and each new day is a NEW day. He loves us again in the morning even if he is throwing things at is and saying he doesn’t love us in the night. He sleeps long, but can;t fall asleep well. He is sick often and can’t decide on what he likes to eat to save his life. His head is cold often because while my hair is growing back his…isn’t. We are taking on new ventures as a family to stay afloat and I am happy he can help. Today we are making toffee and he will help do this. I am thankful he can do the things he loves and he hasn’t been robbed of this. Update done.