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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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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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Today marks six months to the day since Gabriel was diagnosed with t-cell acute lymphoblastic leukemia.  I wish I could say the past six months have been smooth.  I wish I could say the past six months have been easy.  But, I would be lying if I did.

The past six months have SUCKED.

Leukemia sucks.  Cancer sucks.  It’s a horrible disease that takes so much from the person suffering from the disease as well as all those who love and cherish the individual afflicted.

Compounding, at times exponentially, the toll of our journey as a family with Gabriel’s cancer, Chet and I have been faced with many other burdens, challenges and heart wrenching circumstances beyond Gabe’s cancer.  The past six months would have been difficult enough emotionally with the other things that have occurred in our lives – major health issues with close family, the death of a dearest family member, deaths of family of close friends, and more – yet, all this has been piled on the stresses of coping with a child who is fighting the battle of his life, for his life.

I’ve had many friends share this quote from Mother Teresa:

I know GOD will not give me anything I can’t handle.  I just wish HE didn’t trust me so much.

Last night, Gabriel was downstairs cleaning his bedroom.  Chet looked down the stairs to see Gabe sitting on the floor of his room crying.  We went downstairs to understand what was going on, and he was looking through a book of pictures of his first grade class, crying because he misses his friends.  He misses friendship, companionship, socialization, things 6 year old children should be able to experience.  Things kids his age should be experiencing, but he hasn’t because of the cancer.  He has missed out on those precious moments because of the horrible awful despicable cancer.  It took every thread of my being not to sit there and sob with him.

We had to make a decision at the end of the school year: were we going to advance Gabriel to second grade, or were we going to hold him back in first grade?  Gabriel was doing great in math, science, etc., but his reading is way behind.  Ultimately, we chose to hold him since he has been by far the youngest in his grade (he made the cutoff for kindergarten by four days), he is by far the smallest kid, and what was the point of pushing him forward.  It seems like it should have been a no-brainer, but it was a difficult choice for Chet and I.  We knew that Gabriel would watch his friends, those same friends who he misses, advance without him.  We knew he’s good to go in every other subject than reading/language.  But, we also knew that we had to do what was best for him, not what seemed like a “feel good” choice at the moment.

As my grandmother so appropriately phrased it for us, “he’s not repeating first grade, he’s finishing first grade.”  And that’s so true.  Because of his treatment he missed half the school year.

But, despite the decision being correct or right – the fact that we had to make that decision when Gabe’s missed out on so much with those friends hurts. My heart hurts.

However, despite all the tears that have been shed, despite all the sadness and difficult days, we are so blessed.  We are truly blessed beyond measure.

Six months ago – at the time this picture was taken, just a mere three days before I received the fateful phone call, Gabriel likely had leukemia raging throughout his body, but we had no idea.  He was happy, adorable, and just a regular 6 year old.

And, today, Gabriel still is a happy adorable and regular 6 year old thankfully to the keen observations of Dr. Christopherson and the swift response by all involved, particularly the Oncology doctors at Children’s Hospital Oakland.  The mere fact that today, a child whose body was being consumed by cancer is still with us is a beautiful and wonderful blessing.

We are blessed that Gabriel has responded incredibly well to treatment.  We have received so many enthusiastic responses from all of the doctors who have been involved in his care and treatment regarding his response to the treatment he has received.   We are blessed that we have a child who has tolerated the medicines, the poisons, the pokes, the tests, the doctors visits, and the isolation so well.

We have been blessed with a community of family and friends who have offered so much support, love, prayer and help when we’ve called for it.

We’re blessed that aside from one infection, our only hospital admissions have been routine and scheduled.

We’re blessed, because we have seen Gabriel grow into a little person wise beyond his years with a heart of love and appreciation for the silver linings offered by the disease, even when he’s otherwise upset about the less appealing aspects.

Chet and I have been blessed with one another.  When I’m weak, he is strong for the two of us.  When he struggles, I have the strength to offer to him in return.  We are blessed that despite some of the most stressful circumstances one can find themselves experiencing, we are more unified in our marriage than I believe we were before.

Laura Story, a singer and songwriter wrote a song “Blessings.”  The lyrics are spot on in so many different ways.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

(Chorus)
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

I recently found out my aunt passed away over the weekend.  She lost her fight against cancer.  Cancer sucks.

I loved my Aunt Mary.  I have countless fond memories of my time with her.  Love filled, laughter filled moments.  Moments that I will carry continually in my heart.  My Aunt Mary showed me different ways to look at things.  She planted a seed for my love of cast iron cookware, my interest in cake decorating.  Through her and my Uncle Emo, I was introduced to the idea that regular people can have farm animals, can provide for themselves off the land, can be independent spirits.  Yet, for reasons I don’t know and probably wouldn’t ever be able to understand, she isolated herself from the family during her battle.  While I accept the decisions and choices she made, those same choices and decisions have left me baffled.  And loosing her to cancer just scraped at the slowly healing wounds of my heart relating to Gabriel.

Godspeed Aunt Mary.  I love you and will carry in my heart your smile, your laughter, and the beauty of your heart.

Next week Gabriel enters the second to last phase of his treatment – delayed intensification.  The next eight weeks will be difficult in our household as we again go into complete lockdown mode.  Gabe’s counts will be extremely low for the bulk of the summer. Chet and I are beginning to mentally, emotionally, and logistically prepare for this last phase. We’re ready.  We’re ready to get to maintenance so that Gabriel will finally achieve normalcy in his life. Until then, we are equipped for this next “battle.”

Please, continue to pray for us, Gabriel and my family.  We’ve experienced a lot already in 2011, and the year’s yet through.

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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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