CANCER SUCKS

First, let me start this out with “Gabriel’s doing awesome.”  We have truly been so blessed with his health and progress.

We are two weeks away from him getting his central line/Broviac out.  This my friends is worthy of five exclamation points!!!!!  For those of you who have not experienced a Broviac line, this is a huge step forward in his treatment.  For us it means a lot.  First, no more weekly blood draws.  Second, no more weekly dressing changes.  Third, no more daily flushes.  Fourth, no more almost guaranteed hospitalizations if he gets a fever, even if for some reason his counts are low, because the fear of a blood infection isn’t there due to the absence of the central line.

Yes, there are some downsides.  We won’t be doing weekly blood draws, we’ll do monthly, which means we’re going to be in the dark about where his counts are at – and we’ve gotten pretty accustomed to knowing that information.  And, Gabe’s going to be getting pokes, real pokes, for every Chemo treatment and every blood draw.

However, the upsides are just too much, besides all the stuff just related to the maintenance of the line, Gabriel will be able to go swimming, take baths, get in our hot tub, and do all sorts of things like that, things he hasn’t been able to do for the past year and half.  It’s amazing how little things can mean so much.

Outside of that, there hasn’t been a whole lot of news to report.  We’ve been hunkered down for the past few weeks.  Gabe’s been having fun doing his Cub Scouts activities.  Chet’s a running fool.  And, slowly, ever so slowly life is beginning to feel a bit more normal and there are moments where you almost forget that you’re still living with cancer.

If you haven’t seen this video yet, it’s awesome.  It makes me just cry, tears of understanding, compassion, pain, joy, empathy, sorrow, all in a single moment.  But, again, it is just awesome.

You know, cancer makes you stronger.  Whether you’re the one actually dealing with the physical disease, or whether you’re the loved one sharing the journey.

Today, Chet and I found out a dear friend has just been diagnosed with cancer.  It’s a cousin to leukemia, and man it just hurts deep in the gut.  The pain is just too deep to describe and there’s no way to express the emotions associated with knowing another person you know and love has to deal with such a crazy disease.

We shared with Gabriel our friend’s diagnosis.  Man, the kid is absolutely astonishing, empathetic, and incredible.  He started crying.  Today he got a stress relief squeezer thing.  Gabe was so frustrated that through gritted teeth he asks me for the squeezer.  I dig it out of his bag and hand it to him.  He starts squeezing it as hard and he can, and then throws it across the room in anger.

He is such an amazing person.  I hope he never looses that empathy, compassion and just real nature.  It makes him into an absolutely awesome soul to be around.

We’re all stronger from this experience.  Our most fervent prayers go out to our friend and we ask that you pray for his health and prognosis too.

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So many blessings.

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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A Continuous Journey

Life this past year has definitely had it’s highs and lows for each of us as a family. Reflecting back, we’ve spent so many months in isolation. And, we do it because it is the “right” thing to do, but that doesn’t take away the emotions and the feelings of loss and missing out.

 No one has felt this more than Gabriel. And, frankly, quite often I think Chet and I have no concept how hard it has been on him. Gabriel has been such a trooper and just tolerated everything so well, we just don’t fully comprehend the hardship on him. He’s one tough kid, emotionally and physically.

 But, there are just things that happen that give you an little insight into his mind and heart. And, well, this is just one of them.

 

 Wow. All I can say is that it made me cry. And well, made Chet mushy too (don’t let him know I said that).

 Our crawfish boil is an annual event with friends and family from all around. And, well, this year we just couldn’t do it. Gabe’s counts were too low, we were too financially strapped, and emotionally, we were just too drained. Little did we realize how much that annual event, which normally also has a bit of a birthday celebration for Gabriel built in, meant to Gabriel.

 Honestly, quite often I’ve felt guilty that we have so often combined Gabe’s birthday with the Crawfish Boil. The timing each year just works out that way. But, it seems like it has been a good thing.

 Gabe’s counts finally came back up. He went back to school yesterday. The bummer is that Friday we head back down to Oakland for a five day hospital admission. So, he’ll be out of school again for a few days.

 That’s tough. He’s missing his class musical. He was going to get a part in it, but he’s missed so much school due to cancer that they had to give the part to another little boy. He’s been okay with it, but I know deep down it has to be disappointing. How can I take that away? I can’t. But, hopefully, the time out of school will get less and less. We’re all ready for that.

 But, this past weekend, Gabriel, Rebeka and I got out for a nice 3 hour tour. No, we didn’t end up shipwrecked anywhere, even though we were close to water. But, we did get about 2.5 miles of hiking in and had a good time.

 We hike on the Deadman Gulch trail in the Washoe Lake State Park. It was a whole lot of fun and I’m so grateful that we’re able to get out and do fun things together and not be stuck isolated at home.

Here’s Gabe looking out a big hole in a fallen tree at the trailhead.

Rebeka was anxious to get going and was impatient to get hiking.

Rebeka was beside herself to get into the water.  See how white her shoes were.  “Were” being the operative word – I failed to get an after photo.

Gabe enjoyed a water stop while waiting for his sister to catch up to us climbing the hill.

Not a bad view or a bad climb.

After taking a long and round about walk up to the lookout, this was the best picture I could get of the two of them.  What is it about getting two siblings to look at you and smile at the same time?

Rebeka was super excited about her backpack.  And she got many compliments on it from others while we were out on the hike.  I think it’s just adorable.

And here was one of the final photo opportunities before the battery was spent.  A great cut-out / exploratory mine out on the trail.

Stay tuned.  Next hike T.B.D.

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It’s been far too long, and I’m breaking the silence.

Where do I start? It’s been way too long, and I’ve meant to come and update so many times, but my heart hasn’t been able to put my focus to actually sitting down and writing an update.

I think I really last gave an update as we entered maintenance. And with that, I had high hopes of a smooth road of bliss and a normal life. Well, that’s been partly happening. But, there has been so much more occurring in our lives, not just cancer, and a lot of it resulted in a lot of stress and not so positive happy feelings in me. And, because of that, I just didn’t have the heart to write it out.

One thing I’ve learned over this past year is that it is one thing to write about the stress associated with watching your child go through a diagnosis of cancer and the resulting treatment. For me, writing and sharing about that was comforting and healing. I was able to face the emotions, fears, anxiety and other feelings and basically talk myself through them while sharing our journey.

Unfortunately, I’m not as comfortable sharing about the other stress inducing experiences in our life, and 2011 was packed full of them. As in the words of the old Morton Salt advertisements, “When it Rains it Pours.” And, that has been the last year for all of us.

Right about the time Gabe started maintenance, other factors outside of cancer resulted in a very dramatic increase in my stress level. I was just plain frazzled. And, unfortunately, these stresses continued for several months. And new things were thrown into the mix, including getting laid off from my job at the end of the year.

Whew, what a year – right? Started with a bang and ended with one.

Fortunately, the people I worked for were amazingly gracious to me and truly the economy just finally hit and like millions of other people in this country, I became one of the statistics.

Really, how do you talk about that? For me, I couldn’t, not particularly when I was in the depths of the emotions and everything else. And because of all the stress associated with that, along with other things happening in our lives, I just didn’t have it in me to keep my chin up and look at the bright side.

I was fighting depression and felt for many months that I didn’t have a whole lot else in me to keep on the good fight. I was beyond exhausted, beyond frustrated, beyond exasperated. As I said to a close friend, I was at the end of my rope desperately clinging to the knot at the end praying that I didn’t loose what little grip I had left.

But, in life, all things pass. I started to feel better and get over the despondent emotions and began to pull up my big girl panties and move on. And, just as deep in my heart I knew, as soon as I was ready to emotionally move on, things would develop. When one door closes, God, in his own time, opens another – and at the end of February I started a new job as a Deputy Attorney General for the State of Nevada.

So, when you’re down, feeling awful there really isn’t a lot inspiring to even frank to talk about.  That’s just not the kind of person I am.  I try not to whine too much about life.

I’m sorry I haven’t been updating, but there’s a little bit why.

Okay, that’s more than enough about me. Let’s talk about the stuff that this blog is really all about – our family!

Gabriel is doing great! We had the hospital admission over Halloween, which sucked. Really sucked. Poor kid came off of a 5 day admission for Nelarabine in Oakland only to come down with a fever. Much to our surprise, his ANC was crazy low and stayed crazy low for the entire time we were in the hospital – 11 days. And, all that was due to a sinus infection. Yes, a simple run of the mill sinus infection.

But, those days in the hospital, I sewed his Halloween costume and while he missed trick or treating this year and all the fun festivities, he did get an awesome costume.

And even after 11 days in the hospital, we got sent home with quite a nifty set up for continuing to give Gabriel some heavy duty antibiotics.

But, slowly his body recovered and he was able to go back to school.

Yes, finally, we are starting to be more NORMAL! Yes, there is a normal life during cancer treatment! It just takes a very long time and also requires a bit of redefining of “normal” for our family.

Gabe’s been participating in Cub Scouts and has almost completed all the requirements for his Wolf badge. He’s going to school, having fun with friends and even got to go on a field trip a while back. WOW!

But, in treatment, there’s still adventures; ups, downs, and the like. We had another hospital stay right before Christmas. That was pretty emotional, as it was my biggest fear that we’d spend another Christmas in the hospital. Again, Gabe missed out on the school Christmas festivities, which really bummed him out. But, due to the incredible compassion and advocacy of our treating doctors (who are all A-M-A-Z-I-N-G), Gabriel was discharged on Christmas Eve and we got to spend Christmas at home, albeit it was with incredibly low counts but he was home and that was all that mattered to us.

We also got to have our first legitimate family vacation over MLK weekend. It had been more than a year and half since we had been able to go out of town – all four of us – and just have a great family holiday. It was fantastic! We loaded up the camper and headed north to the Modoc National Forest and went obsidian mining! Seriously, it was awesome. We came home with more obsidian than I can shake a stick at (several hundred pounds worth) and we’ve got grand plans for our next adventure up to the Modoc for more mining and exploring.

On the drive up to the Modoc.

The weekend was truly and adventure, filled with tree chopping, digging, cuts, blood, and exploration.

A perfect Fairbank Family vacation.

And who can miss Rebeka’s 3rd birthday.  It was a blast.

We were able to get out of town for an impromptu camping trip again a few weeks back.  We visiting Indian Grinding Rock State Park and just had a great time as a family.  It feels so good to be kind of normal, even if it only comes in waves.

Gabriel was also a guest speaker during the Northern Nevada Children’s Cancer Foundation’s Elevate Life Campaign.  Gabriel and I were interviewed by Dan Mason on KKOH here in town.  What a cool experience to be able to share with people in our community a little about our journey and to support the Northern Nevada Children’s Cancer Foundation’s fundraising efforts.

And a few weeks back Gabriel’s Cub Scout Pack did a community service project to reseed part of the area burned in the Washoe Drive Fire in January.  The Pack went out to Little Washoe Lake and spread seed over about two acres.  And, the pack got a bit of press, and Gabriel’s picture made the front page of the newspaper!

Probably the most difficult part about this phase of treatment is that Gabriel no longer looks and acts like a sick kid (not that he’s often really looked that bad). But, it’s easy for people to forget that he’s still undergoing treatment. We’ve still got a very long road ahead of us.

For example, last week, despite all efforts to work out his oral chemo, we’re still on a roller coaster ride.  Gabe’s counts dropped below 750, and they stopped his oral chemotherapy to hopefully avoid ending back up in the hospital with an infection and zero immune system.  But, we’re about 6 months into maintenance and we’re still trying to work out those ups and downs.  Dialing in the oral chemo is a huge challenge for everyone, the doctors, us and Gabriel.

And, even though Gabe doesn’t look or act sick, he’s still in a cancer kid.  The Cub Scout Pack had their pinewood derby, and even though Gabe’s counts were low, we let him go anyway.  He had to wear his mask, but he got to go.  And, his Den won Fastest Den!  How cool is that. 

Granted, the journey is getting easier by the day, but there’s still more than two years of treatment left, and that’s just still a long time. And, Gabe’s still going through a ton, emotionally and physically. But, he’s adapting to being back in school. He’s re-learning important social skills, and he’s got an incredible relationship with his sister, which I can only pray will continue throughout their lives.

So, there’s a quick update of the past several months. I’m not going to be such a stranger any longer. I’m out of my funk and there’s awesome things to share with everyone about my incredible and amazing family.

And, here’s a parting shot of Little Miss Fiesty.  She’s definitely gotten the short end of the attention stick this past year, but she’s a great kid and we sure love her to death too.

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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.

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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.

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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.

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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.

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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.

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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. 

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