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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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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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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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.

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Dresses!

Okay, so Saturday I spent some time sewing dresses. I had stumbled across patterns from Tenderfeet Stitches on Etsy a while back (have I ever mentioned how many hours I can waste browsing Etsy and wish I could buy everything I fall in love with).  Anyway, several weeks ago I made a couple dresses for Rebeka from the Bubble Ruffle Dress pattern.

I was inspired by the camo pattern Amanda with Tenderfeet Stitches used and I made this dress for Rebeka.

I LOVE the dress.  It is so stink’n cute.  And after it got washed (i.e. reversing the stretching from sewing), it is even more adorable.  that same day I also made this dress for Rebeka.

Same pattern, just different color scheme.  And, yes, I need to work with Rebeka to be a better model.  She truly has a mind of her own and is very independent, which makes her extraordinarily resistant to posing like a sweet little girl for pictures.  Hahah!

For me, sewing has become a source of relaxation and stress relief.  I have truly been enjoying seeing creations come to life through the joining of fabric with needle and thread.  I honestly just love it.

So, with that first pattern, I feel in love with Amanda’s patterns.  She has an awesome way of just making incredibly cute item very easy to sew with very basic instructions.

I began following Amanda on Facebook, and imagine my excitement when she offered one of her patterns to her “fans” for testing.  I had the opportunity to test her new Classic Crossed Bodice Sundress pattern this past weekend.  And, it was awesome.  Here’s the final product of the dresses I made for Rebeka:

And, here is the back of the dress.

After suffering through absolute brain damage while making Rebeka’s dress (ended up ripping out the hem and waist seems three times), ultimately, it turned out amazing.  It way my incompetence, not the pattern, that caused my problems.

Next, I moved on an made a similar dress for my friend Char’s granddaughter.  I had hope to make a couple more dresses, but only had enough fabric for one more that day.  This time I used some pink tule which I added to the skirt.

The dress pattern has been deemed an absolute hit here at the house.  Chet loved it, I loved it, Rebeka loved it, and Char’s granddaughter loved it.  This weekend I’m going to test another pattern for Amanda, I can’t wait.

I’ll give a comprehensive update on Gabriel tomorrow.  In a nutshell, we’re finally getting out heads above water.  These past couple weeks have been so emotionally trying for Chet and I, and I’ve been struggling to avoid a pity party and I just didn’t feel comfortable bearing all the struggles we’ve been feeling just yet.  I guess, I just didn’t feel like whining.  Honestly, so far in this journey, I’ve truly felt blessed and optimistic with all that we are facing.  However, these past couple weeks, my optimism just wasn’t there.

But, we’re doing well.  Gabe has turned some major corners these past couple days, and things are progressing.  We’re officially 3 years from the end of his treatment (okay, 3 years and a couple weeks).  But, we’ve got an end in sight and come hell or high water, we’re going to be having one heck of a party at the end of May, 2014 – mark your calendars.

Oooh, and I almost forgot – Amanda at Tenderfeet Stitches is amazing in so many different ways.  When she learned of our journey with Gabriel, she placed this dress for auction and is going to donate the proceeds to Operation Leukemia Elimination.  How amazing is that?  We are so blessed, blessed beyond words.

Photo from Tenderfeet Stitches.

If you’re interested in bidding on this beautiful dress, you can do so HERE.

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Home Again.

Late Thursday afternoon, Gabriel was finally discharged from Renown and he and Chet headed home.  It’s been bitter sweet.  A lot of the same feelings of anxiety, fear, paranoia and uncertainty fill your very being – like when we were first discharged from Oakland Children’s after Gabriel was first diagnosed.

Unlike all the other times Gabriel’s left the hospital, this time he’s not his normal bubbly self.  He’s still sick and miserable.  And it’s heart wrenching.

Every day is a struggle to get him to drink fluids and an even bigger struggle to get him to consume any calories.  For the past week he’s eaten hardly anything, which doesn’t help him feel any better and certainly doesn’t make it any easier to keep food down.

It was encouraging Thursday night because Gabriel asked for food – celery.  And, well, guess what – we’re out of celery.  So then he asked for olives, which we had and after a couple olives, they just didn’t taste good.  That was the extent of food for him last night.

Finally, out of probably what is approaching shear desperation, Chet broke out one of his Cherry Bomb Crank eGels.  Well, Gabriel didn’t want to eat it solid, but Chet mixed it with water and that seemed to be appealing to him.  Well, at least that’s 150 calories and a bunch of sodium and potassium, which hopefully will help his little tummy start to feel better.

In a lot of ways, what Gabe is going through is like what ultra distance runners go through during an event.  Even though he’s not necessarily exerting his body with physical activity, his body is depleted from lack of calories, lack of of nutrients and when the body is low on those nutrients, the body has a hard time processing food.  The result is the difficulty or inability to keep food and even water down, which is really where Gabriel’s at.  So, if we can find ways to start restoring the balance of electrolytes in his system a little, then it should make it easier, and more appealing, to drink and eat.

Over the past couple days we just tried to get as many liquid calories in him through the eGels and tried to get him to drink as much water as possible.  And, today we finally felt as though we made forward progress.

He woke up a little more chipper this morning – meaning he would actually talk in more than grunts.  He spent the day upstairs with me while I sewed (there’s going to be a post on my sewing projects today in the near future) and by this evening, by the glory of God, we actually got him up, walking and outside for a little while.  He’s shaky on his feet to a degree, but he was up and moving, and that was absolutely AWESOME to witness.

After hanging out by the “fire” on the back patio for a while Gabriel explored the yard for a while.

Small steps and R.F.M.

It was just nice, all of us hanging out on the back patio by the “fire.”

Getting Gabriel to the point where we can just keep fluids down and not expel the antibiotics that we have to give him has been amazing today.  That’s a good enough start to recovery for me. It has been an amazingly miserable week.  Gabriel truly has not been himself.  The kid finally got knocked down.  And as a parent, that is horrible to witness.  But, finally we’re making progress.

Nothing like seeing my kids outside together.

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R.F.M.

Years ago, a good friend of ours, Jim from New Zealand, used a term when encouraging Chet about running his first 100 miler – R.F.M – which stands for “relentless forward motion.”  Jim was instilling in Chet the mentality that to achieve your goal, to cross the finish line, you had to just continue to put one foot in front of the other. You must continue with relentless forward motion.  It doesn’t have to be fast, it doesn’t have to be steady, it just has to be relentless.  No matter what, you’ll take that next step closer to your goal, the finish line.

It occurred to me this evening that those same words, that same concept is applicable in so many aspects of life.  And for Chet, Gabe and I, we just have to keep it in mind – R.F.M.  Eventually we’ll get there.

This is the race of our lives, it is the battle of our lives.  And, we haven’t won the war until Gabriel is all better.

However, the last couple days I was down, really down.  I was angry at myself that some how we had let something through the defenses.  I was sad watching Gabriel be clearly miserable while dealing with whatever it is attacking his body.  I was worried about whether or not what he was going through was normal.  I was scared about what the bigger implications of fever might mean.  I was anxious about the potential financial burden another air ambulance ride to Oakland might mean.  All of this was truly just breaking me, plucking away at the last threads of strength I felt as though I had left in my soul.

Then, this morning it just felt worse.  We received some concerning news regarding Gabriel’s blood counts from this morning.  What we were being told was mind boggling and beyond comprehension.  We were being told that Gabriel’s platelet counts looked to have plummeted overnight – to the tune of 200,000.  We had no information on his ANC, which we had been told was 88 the day before (keep in mind a “normal ANC is around 2500 to 3000).  His fever had spiked again the night before.  He had been vomiting the day before.  And well, his body was just being beat up.  So all of this just felt extraordinarily overwhelming.

However, even though it felt like there was so much not going the direction we needed it to be, there is always a glimmer of hope through faith.  Although, honestly, I was having a very difficult time seeing that glimmer.  That hope came in the form of one of the treating oncologists from Oakland Children’s Hospital who was in Reno for the Reno clinic,  Dr. Torkildson.  The first round of encouragement was when he was shocked to find out that this was Gabriel’s first fever since his diagnosis in December.  According to the doc, it’s extremely common for children with leukemia to deal with fevers and even more so for kids with t-cell leukemia.  He answered all of Chet’s questions and gave us both the comfort that Gabriel was being given the best possible care here in Reno as he would have received in Oakland.  Yes, we’ve become pretty partial to the Oakland folks.

The next round of encouragement came through Gabe’s temps throughout today.  All day he was hanging in the mid-99 range without any medication to treat the fever.  More encouragement came in the form of final blood test results from today.  The early numbers were just bad, as the blood sample had coagulated on its way to the lab.  So, the second blood draw and testing showed that Gabriel’s ANC counts have come up to 300 even though is platelets have come down a very small amount.  And finally, capping off a trickle of good information was the fact that this evening when Gabe’s temps usually spike to above 101 and into the 102 range, his highest temp today was 100.2 without medication.

Relentless Forward Motion.

Truly, there are days where this journey feels like an extraordinary challenge.  There are moments where I doubt my own ability to hold it together.  Yet, just when I’m pushed so close to what feels to be my breaking point, the pressure is relieved and I’m able to take a deep breath again.

I don’t know what the purpose of this is, but I’m content to never know how much more I can handle.  Sadly, I don’t believe for a second that I’m not going to be challenged again.  Yet, this experience is strengthening me to be prepared to handle the battles that are yet to come in order to win this war.

Right now, Gabriel’s still got a lot of road to cover before he can be discharged from the hospital.  We’re not in the clear as of yet.  But, we’re a couple steps closer to that outcome. Prayers work, positive thoughts and encouragement is so appreciated by Chet and I.  And, for Gabe, well, I know he just is ready to get out of the hospital and start feeling better.  Right now, he just doesn’t feel good and honestly looks utterly miserable.

Thank you for all the love and support.  You, our friends, are appreciated and cherished continually!

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So, Apparently It Was Bound To Happen

Since Gabriel was diagnosed with leukemia, there really has only been one word that has struck fear in our hearts – FEVER.  A fever means hospitalization, the possibility of an air ambulance trip to Oakland, a lot of unknown.  In our efforts to keep this nasty word out of our vocabulary when dealing with Gabriel, we have been extraordinarily vigilant about protecting Gabriel.  As people close to us know, we have been totally isolated Gabriel and ourselves.

Literally, Gabriel goes to clinic, or the hospital, and our house.  Since his diagnosis, he’s been to my parents house once, in one large store and one small store.  That’s it.

So, imagine our despair when Thursday evening we had to face the dreaded “F” word.  No, not that “F” word …the fever word.  Yes, Thursday, Gabriel got a fever.  Fear, anxiety and uncertainty were flooding over Chet and I as we tried to come to grips with the reality.  So after several calls with Oakland Children’s on-call oncologist, Gabriel and I finally headed off to Saint Mary’s E.R.  The entire drive to the hospital, I was just praying that we wouldn’t end up no an air ambulance and that we were wrong, that there wasn’t a fever.

Unfortunately, we weren’t wrong.  So, after several hours at the E.R., the decision was finally made to transfer Gabriel to Renown Medical Center to be admitted.  The decision to transfer him was based on the fact that Saint Mary’s pediatric ICU wasn’t capable of caring for him since he’s extremely neutropenic.  We finally got out of Saint Mary’s and over to Renown around 3am.  What a l-o-n-g night.

We don’t know what the cause of his fever is.  But we do know a few things.  We know that his ANC is very low, but yesterday’s low point of 144 was the bottom as today we’re moving back up and Gabriel still has a fever.  We will still be here until the fever is gone and his ANC is at an acceptably high enough level, and that will likely be several days, if not a better part of a week.

The difficulty with this isn’t so much the fact Gabriel has a fever.  The fever in a lot of ways is just par for the course in kids with leukemia, so we’re told. In fact, EVERYONE has been very surprised that this is our first time here with a fever.  So, in a lot of ways, I guess that’s just what we should have expected.  The difficulty is US.

We have tried so hard to avoid this.  We are neurotic about sanitation, cleaning, isolation, minimizing any risky contact.  And, yet, I feel like I’ve failed Gabriel in some way since this has happened.  Everyone has said that you can do everything right, and there is just no way to prevent a fever from happening at some point in time.  But, I am frustrated, because I still feel like somehow, we did something wrong.  Somehow something made it through our defenses, and it makes me upset.  I NEVER wanted this to happen, and yet it did.

We will probably never know the cause.  They are doing blood cultures, and as of now, there results are negative.  They keep doing cultures while we’re here to make sure something doesn’t “pop up.”  And, it could be anything causing this.  So, now we just sit and wait it out.

If you will continue to pray for Gabriel.  Please pray that his ANC counts come back up quickly and that this fever breaks soon.  Pray for Chet and I to have continued strength and perseverance as we continue to face new challenges and hurdles in this journey.  Pray for Gabriel to just be comfortable and know that the isolation and loneliness will be over soon and that life again will be normal.

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A Continuation…

Alas, I promised everyone that I would continue on with more about Gabriel’s hair loss.  And, I will not disappoint for fear of being chastised.

The radiation eradicated his hair.  It was starting to grow back after he first started loosing it and then WHAM…I guess that is how you would describe massive clumps of hair coming out.

Fortunately, Gabriel was really cool about it.  He pretty much asked that we cut his hair again.  We suggested shaving it close as close as possible and he was good with it.  So, this was the before image –

And, off it came.

And, Chet being the good Dad, he also joined Gabe in his hair adventures.

And Chet after.

And the two boys, with their matching hair cuts.

So, there you have it – the hair loss update.  I offered to shave my head too, but Gabriel wasn’t too keen on the idea.  I’m okay with that given it might be a bit awkward with my job.

I know there is so much more to update on…its just by the time the evening comes I really just am too tired to think to hard about much of anything.  Tonight is no exception.  But, I’ll give it my best.

Tuesday, Chet and Gabriel will head back to Oakland for another hospital admission for the next round of nelarabine.  This trip, Chet and I are splitting the time in the hospital with Gabriel – we will each take two nights.  After Gabriel and I get home on Saturday, Gabe will have two days here and then he and Chet will head back down to Oakland for one more overnight hospital admission for cytoxian.  And, hopefully, that will be the last of our hospital visits for several weeks.

This weekend we did a “soft launch” of our fundraising efforts.  While fortunately, Chet and I have been blessed with tremendous family support as well as insurance, there are certain elements that have not been covered by insurance and the cost of traveling back and forth to California has truly began to take it’s toll.  We have put together a medical trust fund for Gabriel and we’re doing some things to provide opportunities for people to support Gabriel.  Part of Chet and my commitment is that once we’ve been able to address the expenses and bills that we’ve incurred thus far as well providing for the remainder of his treatment, any remaining funds in the medical trust fund will be donated to a qualifying 501(c)(3) organization which provides assistance to families in our area who are faced with the diagnosis of a their child with a life threatening illness.  While Chet and I are committed to supporting leukemia awareness and fighting for a cure for leukemia – we’re well aware that there are many different catastrophic illnesses children can be diagnosed with besides ALL.  Our hope is that we can pay it forward not only with what we can put together, but that our fundraising efforts will provide sustainable contributions to whichever organization we ultimately select.

I hope to finish the details in the next couple days – so stay tuned for a formal “official” launch of Operation Leukemia Elimination – Battle For Gabriel.  Here’s a tiny little teaser for everyone…

Finally, to provide a little update.  Last Tuesday, Chet and I faced one of the certain to be many speed bumps in this journey.  Of course, just as we were feeling more comfortable and normal in all of this, we received a call from one of Gabriel’s treating oncologists.  You see, every time they do a lumbar puncture and intrathecal chemo treatment on Gabriel, they take a sample of the spinal fluid.  When those tests are done here in Reno, the clinic makes a slide here and then sends the slide to Oakland for their pathologists to review.  Apparently on the two slides that were taken here the Pathologist found cells which were not expected.  He notified the oncology doctors who then did a more close examination.  As I understand it – and we’re still waiting for better information, as this was all communicated through a brief telephone call – after further review, only one of the slides appeared to have a “blast” cell, essentially a leukemia cell.

Now, understand that it can be very difficult to discern different types of cells, particularly on a limited sample, as was the case with this review.  And, this is confirmed from Chet’s sister, Katie, who is a microbiologist working with cancer cells.  Moreover, the doctor was very clear about wanting to keep us informed, but not wanting to alarm us.  So, they are going to do another lumbar puncture, this time without a chemotherapy treatment, when Chet and Gabriel head back down to Oakland for his cytoxian treatment.  They will take the sample and immediately send it out to the pathology lab for a full examination.

This kind of stuff just takes the wind out of your sails.  But, we have to keep in perspective that he’s had the radiation treatment, and the purpose is to kill off any errant cells which might be floating around.  However, it still is just a bit unnerving.

I presume there are a lot of questions floating around out there in the readership.  What does it mean?  Why?  Do you expect the cells?  In a lot of ways, we don’t have those answers yet.  Next week we will get more answers.  I can do a little explaining however.

First, when Gabriel was diagnosed, his body was absolutely inundated with leukemia.  His whole blood was effectively 97% leukemia cells.  So, when they did the very first lumbar puncture, with his level of infection, they expect that there will likely be some contamination from the tissue the needles passes through to get to the spinal fluid.  As such, when he was diagnosed, they found a very small number of lymphoblasts in his spinal fluid.  Due to the small number and his infection level at the time of diagnosis, they have to make certain assumptions, and one of those was that the lymphoblasts found in the spinal fluid sample were due to cross-contamination, not necessarily present in his spinal fluid.  Based upon those assumptions, the number of lymphoblasts present at that time, and other factors is how they determine what his risk level is and the associated treatment plan.

Now that they think they may have identified a lymphoblast in his spinal fluid – that may be a game changer, but it is unlikely.  At this point in time, as I can understand, they need to go back and reexamine his spinal fluid.  Its just like going back and reassessing whether the assumptions were accurate or inaccurate.  And, even if those assumption were inaccurate – say the presence of lymphoblasts in his spinal fluid wasn’t solely from cross-contamination – the doctors have to determine that it doesn’t change the treatment plan.

The likely outcome will be no change.  Even if there were some lyphoblasts present in his spinal fluid at the time of diagnosis, the numbers have to be above a certain level to result in a change in his treatment plan.  Basically, the doctors are just affirming that the rules haven’t changed even if the basis the assumptions were made are inaccurate.

At the end of the day, this is all likely a big ‘ol non-issue.  But, it just scrapes at sores in Chet and my heart that aren’t nearly close to healing.  It is so difficult to walk this path at times, and to have the information come at you just when you start to feel comfortable feels a lot like someone pulling the rug from under your feet.  You look at Gabriel, and other than the kid having no hair, you just can’t fathom that he’s sick.  He doesn’t look sick.  He doesn’t act sick.

I can’t express the times where I just sit there and shake my head, unable to process that this is happening.  Unable to comprehend how this could happen to a child.  Why a child should have to face such adversity, such pain, so much when they should be riding their bikes, playing with friends, going to movies, going to school.  I have always known and understood that life isn’t fair – but, really, it is so incredibly unfair that a child would have to endure this, or more as many other kids do.  There isn’t a day that goes by that I don’t recognize that we could have it so much worse.

Yet, despite the heartache, the added stress in our day, Chet and I know that we simply have no control.  We have to trust the doctors.  But, most importantly, we have to trust God to handle this.  And, when you give up feeble attempt at controlling any of this, it affords so much relief.  I’m not going to pretend that all the stress, all the heartache, all the anxiety goes away.  It doesn’t.  But, for us, when we realize that we don’t have a mustard seed of input into whether there are lymphoblasts or not in Gabriel’s spinal fluid – well, it just takes that much pressure off so that you can look ahead and the rest of that day, to tomorrow and the day after.

In short – Gabriel’s doing awesome.  He’s an amazing kid who continues to be just demonstrate an incredible amount of strength and fortitude through all this.  For that we are so blessed.

We are so grateful to all of our friends and family who have given us so much support throughout this process.  Sometimes when I look back and realize we have only been not even three months, I can’t believe it, it feels like a lifetime already.  But, each day gets easier.  We will have speed bumps, but they are just that something that jars you when you’re not paying attention, that’s it.

To all of you who are reading this, please continue to pray for him.  The power of prayer is awesome and immeasurable.  The love and support each of you have given us, thank you.  Even though we are horrible about sending thank you notes, making telephone calls and the like – we are just so blessed to have each of you in our lives, thank you.

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