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We made it.  September 16, 2010, Gabriel started maintenance.  We are now one giant step closer to the end.  The journey before us is still long, but we’ve survived the hardest part.  We have crossed that line in the sand.

The word itself doesn’t sound like much.  But, truly, this is a monumental point to have reached.

The maintenance phase of treatment for Acute Lymphoblastic Leukemia is pretty much the same whether it is pre-b, t-cell, or what not.  It is a repeating 84 day cycle that continues for basically 3 years for boys and 2.5 years for girls, based upon the date that the child begins the phase “delayed intensification.”  So, for Gabriel, that means, on April 27, 2014 he will take his very last dose of Chemotherapy medications and on April 28th, he’ll be done with his treatment.

Chet and I are adjusting to a new “normal” now. Once every 84 days he gets a LP (lumber puncture with intrathecal chemotherapy). Gabe is on a daily oral chemotherapy medication.  Weekly he gets another oral chemotherapy medication.  One week every month he gets oral steroids. Twice every 84 days he gets I.V. chemo therapy.  And for the first three cycles, Gabriel will spend 5 days in the hospital when he is given the clinical study drug, Nelarabine.

This is our new normal.

But, with this, we have tremendous freedom.  Starting now, Gabriel is permitted to be a normal activity and is expected to be able to resume the activities he was involved in before his cancer diagnosis.  Monday, his birthday, Gabe will be going back to school.

Life will slowly begin returning to normal.

Once he’s done with all of this Nelarabine treatments, he has the choice to have his central line/Broviac removed.  Once the site is healed, Gabriel will again be able to take baths, go swimming, and be even more active.

Chet and I are currently in Utah for Chet’s 3rd 100 miler of the year – the Bear 100.  I’ll try to pose an update or two.  Gabe and Rebeka are holding down the fort with Chet’s mom and my mom.

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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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Through the Northern Nevada Children’s Cancer Foundation, Gabriel got the opportunity to throw out the first pitch at a Reno Aces game.  The Reno Aces are the Minor League MLB team and affiliated with the Arizona Diamondbacks.

We didn’t know whether Gabriel’s counts would be high enough to do it, but by the grace of God, his counts were good enough and it was an amazing evening.  There really is no way for Chet and I to express our gratitude to the Reno Aces franchise for giving Gabriel the opportunity.

Gabriel got to go down during batting practice and meet all the different players.  While Gabriel was off schmoozing with the baseball players, Chet and I got a personalized grand tour of the ballpark and learned different things about the park we didn’t know.  It was a truly amazing experience. After a while, Gabriel was reunited with us and after finishing the tour together, we all headed out onto the ballfield for the festivities.

The National Anthem

Gabriel was ALL warmed up for the first pitch, and he threw out an AMAZING first pitch.  It was awesome, a great throw, and right on target.

After the pitch, Gabriel was able to take the line-up sheet out to the umpires with the Ace’s Manager, Brett Buttler.

And, of course, he got an amazing photo opportunity with Brett Buttler, an amazing man and cancer survivor himself.

All in all it was a terrific time, an amazing time.  A truly memorable opportunity.

Adding to the awesomeness of the experience was the support of my parents and many of our friends here locally who came out for the game and to watch Gabriel throw out that first pitch.  Mom, Dad, Jen, Dave, Julia, Sam, Melanie, Eric, Aiden, Chloe, Kathie, Al, George and Ronda all came out and showed their support for Gabriel.  That was amazing and really touched our hearts in a way we can’t even begin to express.

This final photo I think really sums up Gabe’s experience.  He still talks about the ball players.

Special thanks to Rick Parr, the General Manager for the Reno Aces for the photo’s too.  His pictures are MUCH better than mine. 

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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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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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Gabriel officially began the consolidation phase of his treatment on January 31 starting with a five day hospitalization and his nelarabine treatment.

Before Gabriel started his nelarabine he got another day riding with Charlie and instruction from Petra.

A friend of Petra’s had a kids saddle that she’s lending us to use, which is awesome.  Petra gave Gabriel some exercises to do while riding Charlie.

There was a lot of time for the two to get exercise out in the arena.

So, on Monday, they headed down and Gabriel and Chet got checked into the hospital and they started his nelarabine treatment.  During the week, Gabriel got one of our FAVORITE nurses, Lauren (have I mentioned how awesome she is?).

Gabriel also got another awesome, and new to us nurse, Chuck.  Chuck was super cool and even autographed a picture of himself from back when he was a professional motorcycle racer.  Pretty cool, huh.

The week went by pretty quickly, all things considered (at least from my perspective) and Chet and Gabriel made it home late Friday night.

We got to spend a nice weekend at home and Monday morning, Chet and Gabriel were off super early to head back to Oakland for another overnight admission and administration of his cytoxan and ARac.

The boys made it home Tuesday evening and it’s just been a whirlwind since then.

Gabriel is doing amazing.  Chet and I…well, we’re hanging in there.

Life is a lot like this…

It is amazing.  Chet has run many 100 mile races staying up all night or for two nights while enduring extraordinary physical demands.  I’ve done many many all nighters and spent days with little to no sleep.  Yet, right now, we are both amazingly spent.  Emotionally, physically, psychologically, and mentally spent.  We are totally spent.

I’ve been thinking a lot of this sentiment from the 80’s…

But, honestly, it’s been these songs that have provided fulfillment for my soul and offered strength to me during these times where honestly, I feel so depleted.

And one of my most favorite artists, JJ Heller.

I know that for Chet and I that this is just part of the journey and that this time will pass.  Neither of us want to wish our days or lives away, but we often look at one another and just look forward to when the demands of all this are not as great and we have those moments to take a deep breath.  We are so have been blessed by so many good friends and loving people in our lives.  With that, your encouraging thoughts, continued prayers, and constant support help keep the wind in our sails.  Thank you.

P.S.  As always with our family, Rebeka TOTALLY cracked us up (almost not in a good way) tonight.  So, I’m getting her ready for bed tonight and I see this big ‘ol BRIGHT GREEN thing up her nostril.  Chet was helping to get all her blankets in place, I ask him, and his response in a very exasperated tone was “It’s a pea.”  So, we tried getting her to blow it out.  We tried pushing it out, and that seemed to only make it travel further up her nostril.  Finally, Chet grabbed the tweezers and with a little delicate digging along with strategic nostril flange opening and pressure resulted in the successful extraction of a green pea from Rebeka’s nose.

Life is always an adventure here in the Fairbank household.

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This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.

Joshua 1:9 (NLT)

The first time I picked up my bible after Gabriel was diagnosed with cancer, this was the verse I turned to.  God extended his loving hand of grace and comfort and gave me the words to carry me through this journey.  Honestly while at the hospital I felt strong and courageous.  I did not feel fear.

Yet, since we’ve been home, there are time when I feel weak, I feel discouraged, I feel like there is so much responsibility placed on Chet and my shoulders that I could just be crushed under its weight.

I suppose that is part of the emotional roller coaster.

Even though I have fully placed my faith in God from the moment I received that life altering telephone call, I’m finding that I am more and more trying to be in control.  I’m trying to take the reins and assert my authority and control what I cannot.  God has been gently nudging me and whispering in my conscious, reminding me that I am not the one in control.  I have a difficult time accepting that, but I am sometimes reminded that I need to just let go.  The burden is truly easier to bear when I’m not pretending that I have some sort of say in the ultimate outcome.

Trust in the LORD with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths.

Proverbs 3:5-6 (NKJ)

I’ve carried that verse with me for many years, yet it is oh so easy for me to fall back and try lean on my understanding, use my understanding, knowledge and skills to influence the outcome of things I just don’t have any business trying to influence.  The times when I totally surrender my heart to God and let him control, he does amazing and wonderful things.

Yet, I am human, stubborn and a slow learner.  I fall back to my ways.

So, I’m remembering right now the peace, calm and joy I felt when I fully surrendered Gabriel to God and left his care, health and outcomes in the hands of God.  I’m recalling the peace I felt trusting that God will guide the physicians to provide the best care for him.

Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.

Philippians 4:6-7 (The Message)

I know the sense of God’s wholeness and how through Him, your heart will be settled.  Thus, it’s time to let go of this worry.  I am giving it up.  I’m giving up my hearts insistence on knowing what the next treatment cycle for Gabriel will be.  I’m giving up feeling like I have control over the extent of leukemia cells which still are present throughout Gabriel’s body.  I’m giving up my futile efforts to change what cannot be changed.  I am lifting those concerns, worries and concerns to God and instead replacing those weights and burdens with the love and peace which I am assured through the love of Jesus.

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