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Posts Tagged ‘joy’

Tonight, as I was singing with Rebeka, “I have a joy, joy, joy, joy, joy in my heart…” I realized how incredibly blessed and fortunate I am and how blessed my family is.

Too often, Chet and I reflect on our past year. I’ll see pictures of Gabriel without hair or with a puffy Prednisone face or Rebeka a year younger, and I have to be honest – I’ll break down in tears. It’s so hard to explain how it makes you feel to walk along this path. Chet and I will talk about how much of this last year we missed just enjoying Rebeka as a sweet little two year old girl. Gabriel’s lost so much of his year, friendships, relationships and those types of experiences. I don’t want to say that as a family we’ve been robbed, but in a way, we have.  And, it’s difficult because Gabe doesn’t look sick anymore, but he’s still fighting cancer, and we’ve got a long journey ahead of us.  It’s so disheartening at times.

But, those are fleeting moments that pass almost as quickly as they come. And, I thank God for that.

And, then it is nights such as tonight, that remind me how incredibly blessed we are. How blessed I am. I have two beautiful children. Gabriel, is alive and doing amazingly well. I have a job I enjoy. I have an amazing husband. And I have a wonderful and supportive family. Truly, life does not get much better; and while we may have rough patches in this life, we’ve been given so many gifts that I can’t dwell in the sorrow, pain, or memories. They are the past and water under the bridge.

So, a couple of weekends back we had a family adventure. Kind of like this past year, what was anticipated to be sunny, beautiful and full of fun – instead,  our weekend was filled with unexpected turns of events, surprises with silver linings, ups, downs, and a beautiful conclusion to the weekend.

Now that I’m a dedicated state employee, I get the pleasure of furlough days. Honestly, I do mean it’s a pleasure. For me, it’s been a blessing, as I wouldn’t have had the opportunity to get a day off this early in my employment except for the furlough day. So, I actually kind of like it. We planned my furlough day for a Friday so that we could take advantage of a long weekend. We knew we’d head out camping.

Originally, we thought about going to Sequoia and Kings Canyon National Parks, but after thinking long and hard, we decided that was just too far to drive for a 3 day weekend. Then we thought about heading to Yosemite National Park, but when we looked at the weather forecast, they were forecasted to get a couple of feet of snow – and that was not inviting to us, considering we were hoping to get some hiking in. NEXT!

Then we started looking at other options: Berlin-Ichthyologist State Park? Lava Beds National Monument? Montana De Oro State Park? North-central California coast? Bishop, eastern Sierra? Chet started checking out the forecast and after much evaluation, trepidation, discussion, and analysis, we decided to head to the Bishop, California area. The forecast was snow Thursday night, cool and sunny Friday, and warmer and sunny Saturday and Sunday. Keep that fantastic forecast in mind.

Friday morning we have the camper loaded, get the kids loaded and head off on our weekend adventure. No real set plans. We had no idea where we’d camp. But the few things we knew we’d do were: (1) stop at Mammoth Brewing and grab a couple growlers of beer; (2) stop at Schatt’s Bakery in Bishop and get some cheese bread; (3) get out for a nice hike.

About an hour from home, Rebeka asks for her nite-nites (blankets). At that point, Chet and I realize that we forgot to grab them. Oy! Rebeka moves into a full-blown fit. I tried negotiating with her (’cause there was NO way we were going to turn around over blankets) and offered that when we got to Bishop, we’d stop and buy her a new SPECIAL nite-nite just for camping. That worked for a little while, but as soon as the distraction passed, it was back to a whining session for her blankets. And, yes, that continued off and on for the whole remaining 2 hours (give or take) to Bishop.

Fortunately, once we got to Bishop, the K-Mart served us well and Rebeka was attached to a new blanket. Whew.

Next, after making the required stops (groceries, Schatt’s, fuel & propane) it was time to decide where to camp. After looking at the maps and a stop to the local National Forest Office, we decided to head up to Grandview campground in the White Mountains. It’s on the road to the Bristlecone Forest, and Chet was told by the Forest Ranger that while the road was closed still for the winter to the Bristlecone groves, it was only a 2 mile hike in from the gate. So, because the hike sounded like a terrific Saturday morning hike with the kids and the campground was just a couple of miles down the road – off we went!

We found this beautifully isolated, and desolate, campground. It was a bit cooler than we expected. But, as soon as we picked our campsite, popped up the camper, Chet and Gabe got the fire going and we got things set up, it started to snow.

Now, it’s time to remember that forecast I mentioned before.

And, I mean that it started to SNOW! And snow and snow.

After a delightful dinner of pizza and Mammoth beer, we hunkered down.  If I haven’t mentioned, I love our camp oven.  It’s AWESOME!!!

Then, in the middle of the night, I wake up to Chet peering out the window. Okay, it was windy, really windy, and all night long in between the gusts you would hear the snow hitting the camper. So, I ask Chet “what’s up.” Chet responds “call me crazy, but I think we should bug out of here right now.” To which I respond “you’re [bleeping] crazy!” and then I rolled back over and tried to go back to sleep.

The next morning we woke up to about 6-8 inches of snow on the ground. Yah, brilliant.

A pot of coffee and a quick pack up, we headed out to drive down the mountain to Big Pine to be lower for making breakfast. As we were driving out, we thought we’d try to head up to the trailhead – just to see if we could make it (and we’re a glutton for punishment). And, we got about a ¼ mile from the gate (by our best estimate), but the snow drifts were just too deep and while we like an adventure, getting stuck isn’t an adventure for us.

No hike to the see the oldest trees for us this weekend.

We headed down back to Big Pine and took a break at the local park. The kids had a blast playing while Chet shoveled the snow off the roof of the camper and I got breakfast cooked.

It was all fun and games until Rebeka went flying off the zipline. Shhh, that’s our little secret – Chet doesn’t need to know that I shared that.

After breakfast, more coffee and some play time, we all headed back up to Bishop and do some browsing at the backpacking stores. At that point, it’s time to decide where to head to next.

Considering there was still a ton of snow in the mountains. Remember the forecast… And it was drizzling in Bishop, we decided to continue north and maybe camp near Bodie State Park. But, then we decided to take Highway 120 from Benton to Lee Vining, because there’s a fantastic 5 mile stretch of road that rolls and is quite fun to drive – especially with kids.

After making out way back to 395, we decided to continue north and Chet suggested camping between Bridgeport, CA and Smith Valley, NV – there’s some fantastic mountains east of the Sweetwater range. And in those mountains we found a perfect campsite with a great fire ring, plenty of wood to collect, and isolated. It was awesome.

We park, we get the camper set up, I get dinner going, Chet and Gabe get the fire going and guess what – IT STARTED TO SNOW!

All I could say was “are you kidding me!” Yes, I really said that – multiple times. Fortunately though, this time it didn’t snow that much or for very long, and we were able to enjoy a nice dinner and Chet and the kids had an amazing fire.

I mean A-M-A-Z-I-N-G!

But I will be honest, when it started snowing again (remember the forecast) Chet and I were so frustrated, we almost decided to head back home. I’m glad we didn’t.

The next morning, we decided to head back to Bodie State Park. Rather, instead of taking the direct route (back to 395) we decided to take the back road from Hawthorn.

The mountains were absolutely beautiful in the morning.

Off we went and it was beautiful, the road heads up a canyon and is just awesome. It’s definitely 4×4 required, but it wasn’t too bad (especially considering some of the Nevada mud slick road we ended up driving on for a while). And, it was great, until we hit the sign regarding the road not being maintained (if you’re coming down from Bodie, not from the direction we came). There we encountered a spring, and there was a bit of a stream crossing across a meadow. No big deal, right? Stream crossing to the left, mud bog to the right. Easy choice – keep left and cross the stream. At least, that’s what we decided (and there might have been some taunting not so P.C. words said by me to Chet about being a weenie – but I didn’t use the word weenie). And that was a great idea until the water was …. well …. DEEP. I mean, like to the top of the wheel wells, mid-way up the doors deep. Oh, and our truck doesn’t have a snorkel.

We had an “oh no” moment.

A quick shift into reverse and we were fortunate to get out before we flooded the engine. Whew! So, through the mud bog we went, and that was a challenge in of itself. We almost ended up high centered, as it was deep in its own right.

We made it to Bodie, in one piece, not stuck, and in good spirits. That was a win. Then we got to tour Bodie, which was a very cool experience.

Yes, experiences like this just continue to build on how fortunate and blessed we are as a family. Cancer, what cancer. We kick cancer’s butt and we’re not about to let it beat us!

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We made it.  The clock is started and the first dose of Nelarabine is done.

Gabriel and I made it to Children’s Hospital Oakland this afternoon around 4:30, and I don’t know why I’m always so surprised by how humbling it is to be here.  Within less than two hours of being back in the hospital I’m given example after example of how fortunate we have been and are throughout this entire process.  There is something about being reminded that we have been blessed beyond measure and no matter how rough our journey has been at times, our experience is really been easy compared to many many families.  Yet, thinking about how truly difficult this has been at times, I can’t even imagine how much more difficult some have it.

I don’t know why we’ve been so blessed.  The entirety of our experience has often forced me to reflect on some of the most difficult questions of my faith.  Why does God permit bad things to happen to kids?  Why do some kids suffer?  How can a loving God allow such adversity, difficulty and pain?

Truth is, I haven’t been able to answer my own questions.  I don’t know why.  But, I do know that for us, this experience has given us so much perspective.  I’ve become more compassionate to other people’s circumstances.  And I know that through the difficult days, we’ve been given opportunities to grow, each as individuals and together as a family.  And as backwards as it sounds, I truly believe that through LOVE, we’re forced to experience hardship because we grow and have experiences we wouldn’t ever otherwise have. By knowing and experiencing the hardship, we’ve learned LOVE. Not the emotion of love, but the action; LOVE as a verb.

It doesn’t make sense.  And, my heart hurts so much for some of the families here. And, as cliche as it is, “no pain, no gain.”  We have truly gained so much through all of the pain we have had.  I can’t say that is the same for every child and their family.  But, for us we have been so blessed by cancer.

Don’t get me wrong, if I could un-ring this bell, I think I would.  I HATE so much about it.  But, I can’t change the truth of our reality, and with the harsh elements of the truth, have been incredible experiences that I wouldn’t trade for anything.

Tonight start the official countdown to maintenance.  I am so grateful to be here.  Not only at this point in Gabe’s treatment, but here at the hospital.  We are surrounded by amazing nurses, doctors, and people here.  It feels oddly “comfortable” to show up.  All that we have standing between us and maintenance is 4 more doses of Nelarabine, a dose of Cytoxin, 8 doses of ARaC, two more spinal taps/lumbar punctures, one dose of Vincristin, one round of Peg-in-the-leg, and the wait for Gabe’s counts to come back up.  That’s it, and it’s so encouraging.

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We interrupt your regularly scheduled programing to bring you this virtually live update.

I was going back and forth trying to decide whether to finish up the “Whole Lot of Catch-Up” series or to actually talk about stuff that’s happening now.  And, well, I’ve decided to provide a live and real time post.  Besides, most of the rest of the catching up involves Chet’s running…and that can wait, right?  Absolutely, so the updates on Western States and the Tahoe Rim Trail will come in due time.  Besides, I’m still trying to compile pictures for those posts.  I’m chronically bad at getting pictures at Chet’s running events anymore.

Onward!

As I’ve previously mentioned, Gabriel stared delayed intensification at the beginning of June.  That involved several weekly doses of the “Red Devil” a.k.a. Doxarubacin.  He tolerated the treatments remarkably well as his counts did not drop as we expected.  In fact, they didn’t drop hardly at all through all three of the treatments, which meant that Gabriel was able to be at the finish line at Tahoe Rim Trail, which was a pretty nice thing.

So, given the fact that his counts were holding steady, imagine our surprise last Tuesday when I called down to confirm that all systems were “go” for starting Nelarabine, the next phase in delayed intensification.  And, we were told that his counts were super low (344).  If you haven’t been privy to my detailed explanations of ANC counts or you’ve forgotten, you can get a refresher here.  We were pushed off a week, until today, assuming his counts were high enough (he has to be at least at 750 to start the next round of Chemo).

But, the flip side of Gabe’s next Chemo being pushed off was that we were all home together over the weekend.  And, this was the first weekend in weeks, no, months, that we haven’t had something going on.  Earlier in the week, after finding out that Gabriel wasn’t going to be in the hospital over the weekend, I had thought it would be nice to get out for a drive as a family, like around Lake Tahoe or something like that.

Saturday morning after cooking breakfast, putzing around the house and just generally being lazy, Chet suggested that we go for a drive.  My response was, let’s go.  We loaded up the car with more crap than we’ve ever normally loaded for just a drive.  But, life isn’t like it used to be.  So, now we are loaded with the “kit” Chet’s prepared which includes supplies to do a flush of Gabriel’s central line if necessary, red top wipes (hospital grade sanitizing wipes), Clorox wipes, paper plates, plastic silverware, paper towels, zip-lock bags, hand soap, and more.  We loaded changes of clothes for both kids, blankets, food, drinks, and yes, eventually the children.

We decided to head out and drive over Ebbetts Pass (CA HWY 4).  Just a couple miles before we got to Markleeville, CA, in an open field, Chet spotted a Mamma Bear and three cubs.

Unfortunately, I wasn’t able to get a better picture.  But, there they are in all their glory.  We spent a while just watching the bears up in the field.

Ultimately, we continued on our way, but not without stopping for some pictures of one of our favorite roadside sites along HWY 4.

There’s just something cool about this old homestead long the highway.  Then there’s the old trailer, which is a converted bus. It’s one of those things that just begs for pictures to be taken of it.

After the pictures, it was time to continue on.  We stopped at Bear Valley to grab some sandwiches for Chet and I to eat for lunch.  While Chet was in the deli, I whipped up some PB&J sandwiches for the kids.  Rebeka inhaled hers, only to be promptly puked up just as soon as we got back on the highway to head toward someplace to stop for a picnic and to let the kids run around. Ahh, thank goodness Chet loaded the “kit” because we had sufficient supplies to do an emergency clean up.  And, fortunately, I had packed extra clothes, so after a swift wipe down (Chet also packed the bath wipes from the hospital) and change, we were back in business.

While we were looking for some place to stop for lunch, we came upon Calaveras Big Trees State Park, and decided on a whim to stop there.  Chet and I have often talked about stopping here, we just never have.  So, this was the time and it was a very good decision.

We stopped and enjoyed lunch under the canopy of cedar and oak trees.

Rebeka was telling us some story here.

 

Gabriel was being overly dramatic about God only knows what here.

The kids got together for a picture, and it was completely amicable, I promise that Gabriel isn’t trying to choke Rebeka here. They were having a great time just running around and exploring.

Chet and the kids walk along a large fallen tree.

After a nice lunch, we decided to go to the South Grove and check out the Giant Sequoia trees which are the main attraction at the park.

We headed out for the 3.5 mile hike to view the groves and it was the most worthwhile adventure.  We saw hardly anyone out there and the kids enjoyed their trek.  Gabriel hiked the entire 3.5 miles and Rebeka did at least 2.5 miles of it, if not more.  It was awesome, the kids had a blast, Gabriel was so excited to be out there and Rebeka was beyond filthy by the time we made it back to the car, which made me appreciate the second change of clothes I threw into the bag.

Rebeka balancing on a log.

Beautiful big trees.

Amazing burl or stump, or as Gabriel named it, “the brain.”

She’s only hardly filthy in the picture.

One of the first Giant Sequoia we saw.

Gabriel approaching the base of the first Sequoia tree.

One of the larger Giant Sequoia’s we saw.

 

A little perspective as to the scale of the tree.

Looking up.

 

Inside an ancient hollow Giant Sequoia.

 

 

 

 

Getting out, hiking with the kids and just enjoying life was such a refreshing change.  It’s something that we’ve truly needed and I’m so grateful that we just decided to hit the road.  As I said to Chet somewhere along the hike, the $8 entry fee was the best eight-bucks I’ve spent in a very long time.  The kids had an amazing time, I had an amazing time and it was just awesome.

So, after we enjoyed a weekend as a family together, we were mentally gearing up for this weeks hospital admission. Again, we were surprised yesterday to find out his counts were still too low.  He was only up to 610.  Again we were pushed back for the start of Nelarabine, until hopefully Friday of this week.

We’ll find out tomorrow to find out whether we’re on for the this next round of Chemo.  Chet and I are so anxious to get this show on the road.  Once we start Nelarabine, we start the clock to maintenance, a point in Gabriel’s treatment we are all to anxious to get to. The difficulty with this phase of the treatment is that we’ve been able to feel somewhat normal, but not able to fully relax due to the fact that we never know were we are at in terms of Gabe’s immune system.  There’s a lot of uncertainty and associated anxiety.  We’ve tried to live a normal life, but no matter how close to normal we try to get, we just cannot dismiss the fact that we’re not there yet.

We have this hope and expectation that once we get to maintenance, low ANC counts will be few and far between.  At that point, Gabe will be able to start back at school.  We’ll be able to have a bit more of a normal social life as a family.  Life won’t be constantly in fear of an infection.  Now, in reality, Chet and I both acknowledge that our expectations are probably a little inflated at this point in time, but hopefully we’ll get there in time.

Until then, we just continue looking forward.  All will come in due time, and we are working on exercising patience and discipline.

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Despite Gabriel’s cancer diagnosis and treatment, certain elements of our lives have had to stay normal, and a major component of our lives for the past decade has been Chet’s ultra running.  Not only has it been a healthy outlet for Chet, but it has brought us into contact with some of the most amazing people and through those contacts, we’ve made incredible friends.  As you may or may not know, Chet’s transitioned from running primarily 50k and/or 50 mile events during the first 5 years of his ultra running life to primarily 100 mile events.

Last year, Chet ran the Western States 100 and he again was selected, through our local running club’s lottery, to run the race.  Chet found out of course before Gabriel was diagnosed at the end of December.  After Gabe’s diagnosis, Chet and I had a bit of soul searching to do regarding his running for the next year.  However, running is such an important component to our lives, and ultimately, it really was a no brainer – of course Chet would be running.

While we were all dedicated to supporting Chet as he trained, this year his training took a new tone and style.  Meaning, Chet basically got his training completed on the weekends.  But, he has been training and running.

One of our “standard” events every year is the Silver State 50/50.  I run the Ranch Creek aid station and Chet runs the event.  This year, Brynda, our neighbor helped me out at the aid station, and I have to say it was a jolly good time.  Brynda definitely kept things interesting!

We have one of the most beautiful locations on the course to set up our aid station, and oooh, yah, there’s a little story behind that.  With all the distraction I’ve had this year, I didn’t give a single thought to where my aid station was until after I was driving up there.  Clearly my brain cells were totally malfunctioning, because I started setting up at the wrong aid station.  My gut kept telling me I was at the wrong location, but I didn’t trust my gut.  Fortunately, we were alerted (thanks Lon) with plenty of time to break down, relocate and set up again.  Thanks to Brynda for indulging my brainless self that day.  Haha.

Brynda was an incredible volunteer and so helpful to me and the different runners.

Chet ran the 50 mile event and looked amazing!

Overall, it was an awesome day.  Not only did Chet and I enjoy having a bit of our normal existence, but Gabriel’s counts were high enough that he was able to go to the pre-race event and hang out at the finish line waiting for Chet.  It was a blessed and beautiful day.

The rest of May and June didn’t involve too much excitement for us.  We transitioned from the interim maintenance phase of Gabriel’s treatment to delayed intensification.  But, fortunately, Gabriel’s little body tolerated the methotrexate he was given that we had the opportunity to have one very special event, and it involved the Reno Aces.  Stay tuned, part 3 of A Whole Lot of Catch Up will be filled with amazement and excitement, I promise!

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Rebeka is often obligated to playing second fiddle around here too often as of late.  Unfortunately, it’s just the nature of the animal we are dealing with at this time.  However, it doesn’t mean I can’t dedicate a little time here to my beautiful little girl.

Before she was born, we didn’t share her name.  Instead, we called her “Rock Star.”  It was awesome, when someone would ask Gabriel what Rebeka’s name was, he’d say “ROCK STAR” in a dramatic rocker sort of way.

From the moment Rebeka was entrusted to us, she’s been full of life and fun.  A little adventurer from the very start.

The one thing that I always find myself doing is just gazing into her blue eyes.  She has the prettiest blue eyes, in my humble opinion.

Over the last two years, I have grown to appreciate this little girl and her inquisitive personality and experience how different she is from her brother.  While they are similar in so many ways, they are incredibly different at the same time.

Like her brother, she is always on the go.  And as of late, it is even more difficult to get a picture of her as she will not stop for a picture for more than 2-seconds.  But it doesn’t deter me, and I keep trying and trying.

As much as her brother is ALL BOY, Rebeka is ALL GIRL (I have no clue where that came from) and she loves to be girly.

She is also the most nurturing and sweet little girl.

Here she was making sure her bear had water.

She also love her Rody Horse…both to ride….

To take care of, making sure it has water to drink.

And to be friends with.

Rebeka is always just being silly and funny and loves to dance, sing, and just enjoy those wonderful experiences of childhood, milking every drop of joy and fun out of every moment she can.

But the best part is that she has her brother who she loves and wants to play with, be close to, hug and snuggle with……..

Except when mommy wants to get a picture of the two of them together.  *sigh*

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Last night the Northern Nevada Children’s Cancer Foundation (“NNCCF”) hosted their annual St. Baldricks event.  The event helps raise money for childhood cancer research as well as money for NNCCF and their mission – helping families in northern Nevada with a child afflicted with cancer.

Chet and Gabriel were supposed to head to Oakland on Tuesday.  However, a condition of starting Nelarabine, Gabriel’s ANC counts had to greater than 750.  Fortunately or unfortunately, depending on your perspective, Gabriel’s counts were a mere 480.  Moving in the right direction, but not nearly enough to start treatment.  So, we’re put off for his treatment until hopefully today.

The positive about Gabriel’s counts being too low for treatment, but higher than they had been is that Gabriel was able to go to St. Baldricks last night here in Reno.

Pete, the son of our awesome across the street neighbors, Brynda and Mike, got his head shaved in support of Gabriel as well as Will and Liam, fellow Scouts.  Brynda also got some shirts made in honor of Operation Leukemia Elimination, and well, it was just incredible.

It was a bit hard for Gabriel at first.  Our normally incredibly UNshy kid was just overwhelmed by the entire experience at first.  But, NNCCF was kind enough to offer a little VIP treatment to Gabriel, and soon enough he was relaxed and taking it all in.

And, ultimately, it was just Fun, with a capital “F.”  We all were just having a good time.

All it all it was great.  We ran into Connie, the nurse practitioner who is part of Gabriel’s oncology team and some other friends.  And, I came |—–THIS—–| close to having my head shaved.  But, amid vehement protests from Chet, I submitted (don’t ever let him say I’m not a submissive wife or woman).

It was lots of fun and just awesome to see the community support out there.  Thanks Reno, Sparks & Carson for supporting kids with cancer!

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vs.

Last night, Chet and I were getting Gabriel down for bed.  And, we had quite the laugh.  The conversation went something like this….

Chet:  “So, you don’t like the underwear with pictures on them anymore?”

Gabriel:  “No, they don’t make me feel like a man.”

Chet and I break into hysterical laughter.

Chet:  “Did he really just say that?”

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