Maintenance.

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.

Advertisement

That Giant Sucking Sound . . .

You hear was the wind being suck out of our sails this week.  Gabe was scheduled to start maintenance Friday, yesterday.

No, he didn’t start maintenance yet.

Wednesday we spoke with Connie, the nurse practitioner who we deal with a lot at Children’s Hospital Oakland, and his counts had barely come up since Thursday last week. Gabe’s ANC has to be at least 750 in order for him to start maintenance.  As of Tuesday, he was a little over 300.  He was just very slowing coming up, and that meant there was no way we’d make it to maintenance as scheduled.

I was crushed.  I am so ready to make it to maintenance. It’s like this line in the sand that once we make it to there, we can begin to have a normal life. We will no longer be hostages.  Gabe will ultimately be able to go back to school.  We can go to stores as a family.  We can go to movies, eat out at restaurants – have a normal life.

Chet and I had started making plans for this weekend.  We were planning a nice weekend as a family, camping, going out for at least one or two celebratory meals. We were going to be like a NORMAL family.  Chet and I got our hopes up, even though we knew were shouldn’t.  We couldn’t help ourselves.

So, when Connie’s call came in, it sucked. My heart just felt so let down.  Not by anyone in particular, not by anything.  I was just so incredibly disappointed.

What’s silly is that it’s not like we are put off that long. We’re probably going to make it next week, but we’ll have to see.  What’s a week?  What’s two weeks?  Really, in the grand scheme of things, it’s nothing.  But, when you’re so tired of life being a constant unknown.  When every day presents a new uncertainty, the concept of maintenance is so alluring.  You just yearn to be there.

Admittedly, a lot of the “romance” of maintenance at this point is unrealistic for us.  We know that the first several months will be filled with a lot of tweaking to get the daily and weekly medications right so that Gabe’s counts stay stable.  We know that there’s going to be a lot of adjustment.  But, we’ll be in the coveted phase “MAINTENANCE.” That in itself will be huge.

So, tonight, we were supposed to be camping, Gabe, Rebeka, Chet and I.  We were supposed to have had fresh seafood.  We were supposed to have gone hiking.  We were supposed to have been celebrating.

Instead, we’re chilling as a family enjoying the bounty of our garden.  We’re harvesting, canning, and preserving. We’re following our advice “keep on keeping on.”

We’ll know next week where Gabe’s at and whether we’ll be able to start maintenance next week.

Most importantly, we know that God wants us right where we are at.  We’re content with that.  When it is time for Gabriel to make it to maintenance he will.  All along this journey, Gabe’s cancer treatment has been in His hands.  And so far, He’s been doing a pretty amazing job, so who are we to question where we are at.

On a side note – I mentioned today we’ve been harvesting.  This was one of our purple cauliflower’s that we grew.

And The Wait Continues

We’re at the tail end of delayed intensification right now, and currently we’re just waiting for Gabe’s counts to come back up enough for him to begin the maintenance phase of his treatment.

These past several weeks have been stressful, incredibly stressful.  Knowing that Gabe’s immune system is completely in the tank brings back a lot of anxiety, fear, and neurosis.  Memories from the first time we went through all these drugs come back and haunt Chet and I.  The fear of another infection, another hospital stay, watching Gabe just be miserable.  We’ve been just waiting, holding our breath and waiting for this last nasty, horrible, awful, despicable phase of his treatment to be done.  And, we’re nearly there.

Chet and I are just starting to allowing ourselves to breath.  And I think for me, I’ve just kept my head down.  So, I’m sorry to all of you looking for updates…there hasn’t been a lot to report except our stress. Honestly, writing about stress and fear isn’t always the most appealing thing, particularly when there isn’t a whole lot of context to put it into or new information to share.

But, now that we are seeing the end of the intense phases of Gabe’s treatment, Chet and I are trying to get excited about the possibility of a fairly normal life, or at least as normal as it will be until April 27, 2014 – which will be the VERY LAST DAY Gabriel has to take any form of chemotherapy.

Once Gabe starts maintenance treatment then he’ll be released to start school again.  And that brings up a whole new round of excitement mixed with incredible amounts of anxiety and apprehension.

So, assuming all goes as planned, Gabe will be starting maintenance on Friday.  We’ll have a better idea tomorrow when we get the results from his blood draws from this morning. If you’ll keep us all in your thoughts and prayers, we’d greatly appreciate it.  We’re so close, and we’re just ready to be there, desperately ready to be there.

A Whole Lot Of Catch-Up [Part 4 – Western States]

Well, it’s time to catch, those who are interested, up on Chet’s running on Western States 100 this year.  Chet was selected as part of the Silver State Striders lottery spot, which gave him the opportunity to have a second running of the event.  Chet really wanted to run the race again because last year was a snow route and he wanted to run the original course.

Unfortunately, it was once again a snow route due to the incredible winter we had this year.  Chet was mighty disappointed and, honestly, had it not been for getting the Silver State Striders lottery spot, he probably would have bailed on the event just because of all the other stuff going on in our life and his desire to do the original course.

Having the commitment to do it though was great.  And, all things being said and done, he really did enjoy the race again this year.

Pre-race meeting at Squaw Valley.

Chet visiting with Jose San Gabriel after the pre-race meeting.

Chet doing his annual modeling of the schwag from the event – Moben sleeves, leg warmers and a head do-hickie-thing-a-majiggie.

The runners nervous energy in advance of the event.

How quickly it clears out about 10 minutes before race start.

Chet hanging out before the race.

Right before the race start – like 30 seconds.  Looking good and chilled.

And he’s off. 

Due to the snow course this year, crew wasn’t able to meet up with the runners until mile 55 at the Michigan Bluff Aid Station.  Chet wanted food, and he was hungry for the real deal.  He put away a foot long Subway sandwich.  I enjoyed just hanging out with Jenny Dicus and experiencing Michigan Bluff with half as many people as usual.

Chet chowing on his foot long.

Heading back out onto to the trail on his way to the Forest Hill Aid Station.

See you in a few miles.

Chet rolled into the Forest hill Aid Station looking great and ready to pick up Scott, who was pacing him this year.

Getting weighed-in at Forest Hill Aid Station.

Looking good and all smiles.

Lots of conversation with George and I.

Scott and Chet are off for the last 38 miles of the race.

While I made my way down to Green Gate, the next reasonable spot to meet Chet; however, I forgot to take my camera and of course didn’t get a picture.  But, it was dark, dusty and not really all that interesting.  After meeting Chet and Scott at Green Gate, I caught a quick 40 minute nap before taking the shuttle to the Highway 49 crossing Aid Station.

Chet and Scott arriving at Highway 49.

Chet, still all smiles with 7 miles to go.

Scott with some witty comment I suppose.  I don’t really remember much from that time of the day/night/whatever.

Chet coming in for a strong finish.

Yah, the first 100 of the year is done and in the books.

And, even after Chet finished sprinting in his 100 miles, he was excited to our friend Bill and ran in along the track at Auburn High School cheering Bill to the finish.

 

Enjoying a well deserved beer after a great 100 miler.

Moments of Humility

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.

I’ll Buy You Tall, Tall Trees …

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.

A Whole Lot of Catch-Up [Part 3 – Aceball]

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. 

A Whole Lot Of Catch-Up [Part 2]

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!

A Whole Lot Of Catch-Up [Part 1]

Not to be confused with ketchup.

Gosh, where does one begin?  We’re in the thralls of our last major phase of treatment with Gabriel.  Next week we get into the super nasty part, but next week, we’re that much closer to the home stretch.  Honestly, over these past few weeks, while there isn’t a day that goes by that I don’t remember that Gabriel has cancer and I worry and think about all of the implications for today, tomorrow and into the future; at the same time our existence has finally not centered around cancer.  We’ve actually had the opportunity to have some of the elements of our normal lives.

Granted, our new normal is a extremely different reality than a year ago; we have been able to just relax and go on with those elements of our lives that were there pre-cancer.

So, with respect to Gabriel – he’s doing GREAT!  We are so truly blessed by his resilience and easy going nature that has made the most difficult experience of our lives that much easier.  His treatment has gone amazingly well.  We’re almost half-way through the delayed intensification phase of his treatment.  By the grace of God, this has gone incredibly well.  So well in fact, that you almost can live as though you don’t have a child with cancer.  The operative word being “almost.”

Don’t get us wrong, not a day goes by that we don’t know that we have child with cancer, but we just haven’t had to have our guard up as much.  Sadly, that all came to a rapid end on Tuesday this week.  Gabriel was scheduled to begin one of his five day hospital admissions this weekend for getting the drug that is part of the clinical study, Nelarabine.  In order for him to start this phase of his treatment, his ANC has to be at least 750.  So, Tuesday I make the routine phone call to the Oakland oncology clinic to do “yada yada, yah his counts are fine, bla bla bla” call.  When Connie, Gabe’s nurse practitioner called me back and said, “oh, no his counts aren’t good” I was floored, literally.  Actually, literally, I said in a most dramatic manner (think Oreo cookie commercial) “SHUT UP!” Gabriel’s counts were only 344!  Remember, if his counts are under 500 his immune system is extremely compromised.

This was a tremendous shock to Chet and I.  Gabriel has been just acting amazing lately – like the awesome little boy we know and love.  He hasn’t given us any indication that his counts had come down.  It makes sense though as his hemoglobin (red blood cells) and platelets haven’t dropped as much as his white blood cell count (the immune system).  So, because in the past when his ANC has dropped, we’ve suspected it because he has been more lethargic and bruised more easily because his platelets and hemoglobin dropped along with his white blood cell count and ANC.

But, while we were able to be “normal” we just enjoyed some comforts of life.  Gabriel and I went out and caught a movie – Cars 2.

It was AWESOME.  Okay, it was awesome for me, cool for Gabriel.  He was very uncomfortable at the movie theater. Sadly, we’ve created some paranoid feelings due to our crazy protective natures.  But, heck, that crazy protective nature has saved us a lot of grief these past several months, so it is what it is.

Anyway, Gabriel is now scheduled for his 5 day admission next week.  Once we start that we are a mere 5 weeks away from Maintenance (assuming his counts come back up in time).  And, he’ll be able to start school again this fall, though a few weeks late it looks like at this point in time.

So, I’ll spend a few posts doing a whole lot of catching up here, including talking about Chet’s running (there’s three races to get everyone up to speed on), fun with Rebeka, and a few items from my own summer.  Lots of love to everyone.

 

Six Months Later.

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.