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Posts Tagged ‘stress’

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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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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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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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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And, we’re all good.  It’s been too long since I last updated here.  These past couple weeks, I’ve just been exhausted.  It is really frustrating to feel so tire.  But, I’ve been tired, we’ve been pretty busy, and sitting down and writing hasn’t been a big priority.

I’m sorry for that.  These past few weeks have been somewhat challenging for me personally.  I’ve been trying to process a lot of emotions, and even though there hasn’t been a whole lot going on with Gabriel, the emotional journey has transitioned for me personally.

Gosh…where did I leave off and what’s been going on.  Gabriel has been making good progress since he was discharged from the hospital. Reflecting back on the time Gabriel was in the hospital, it was so amazingly difficult.  I hated every moment that Gabriel was there.  He was miserable, it was depressing being there.  During the time Gabe was in the hospital and after he was discharged, he was struggling.  It was essentially a 1-2 punch of things that hit all at once.  First, he had the infection, which caused the fever.  The doctors are pretty sure it was a nasty little bacteria called Cdiff which is present in all our GI systems.  Unfortunately, due to his super depressed immune system, this bug got the upper hand for a period of time.  Adding to Gabriel’s battle was the onset of Somnolence Syndrome with was a delayed side effect from the cranial radiation.

These two things resulted in Gabriel struggling to keep food down, not having an appetite, being exhausted, sleeping hours upon hours a day, and just downright miserable.  And, all the side effects resulted in him loosing 10% of his body weight in about 10 days.  So, once we were discharged, he was still dealing with the Somnolence Syndrome.  Gabriel became very weak and just not Gabe.  It was a truly difficult time for Chet and I to see our boy sleeping constantly and wasting away.  We felt helpless.

But, in the past two weeks, he’s made some great progress.  He has started Interim Maintenance, which is the second to last intense treatment phase before he goes into Maintenance.  His counts have finally rebounded, and rebounded with gusto.  His counts are pretty much like any other healthy person in the general population for the time being…well, they were at the beginning of this week.

Because Gabe’s counts had come back so well, he was able to attend the Fundraiser so generously organized by Eric and Melanie Troska.  It was such an awesome event.  I need to upload photo’s and share them.  It was amazing, and so many of you turned out and made it possible, and it resulted in proceeds which will truly help us with several of the expenses associated with Gabriel’s treatment.  I can’t express how extraordinarily humbled and grateful Chet and I are to have the support of friends and family.  We love each of you so much and can’t begin to demonstrate our gratitude.

Chet and I are still obsessive about protecting Gabriel, even though his counts were doing awesome.  It’s so hard – we’re so scared of him getting sick and we don’t want to delay his treatment with an avoidable infection, so we’re still very cautious.  But, Gabe’s been able to get out more, and that’s been a good thing.  At least for the time being.

He had his second chemo treatment in this cycle on Monday.  They say that the meds can bring his counts down, and we only find out his counts about once every 10 days right now, so we still try to play it safe.  So, on that front, he’s doing terrific.

We’re again facing the unknown about potential CNS (central nervous system) involvement.  Unfortunately, the hospital here in town where they’ve been able to do Gabriel’s spinal taps and intrathecial chemotherapy treatments has been having problems preparing the slides for the Pathologists to evaluate.  So, again we’ve got to have a follow-up spinal tap down in Oakland so that they can look at the cells and make sure there’s nothing funky going on.  Chet and I don’t have the level of stress that we had the last time we went through this, but there is still a significant level of anxiety associated with having to go through this again.

The other problem arising out of the inability of the local hospital to properly prepare the slides is that all future spinal taps will have to be done in Oakland, at least for the foreseeable future.  So, while we were supposed to have a break from regular overnight trips to Oakland for a couple months, that’s not going to happen.  Oh-well.  At least we got a couple weeks in there.

So, that’s the update on Gabriel.

Rebeka’s doing amazing – she’s fully engaged in being an active two-year old.  Chet’s running.  And I’m surviving.  I have moment’s where I am struggling finding myself in the experience of life right now.  I’ve gotten to the point where I realize I haven’t been taking care of myself – at all.  So, now I’m trying to figure out how to find time and motivation to tend to myself.  So, that’s my personal struggle.  But, I’ve come to realize that I truly need to find another coping mechanism beside eating.  I joke that I’m a stuffer – I stuff my emotions and I stuff my face to deal with my emotions, and four months of stuffing is truly taking its toll on me.

Okay, my commitment to you all is to update more regularly.  Chet and I will greatly appreciate if you will continue to pray for us.  We feel each and every prayer, they give us strength.  Pictures and more very soon, right now, it’s time for me to hit the hay and get a bit of sleep.

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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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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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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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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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Okay, so I’m starting to feel bad that it’s been so long since I’ve provided an update.  So, here is a brief update.

We made it through Nelarabine with flying colors.  My dad and Chet drove over to do the parent exchange in some of the worst weather we’ve had in a while.  Fortunately, they took the “sneak” route and avoided the highway closures.  After a brief exchange, my dad and I headed back over the hill.  Fortunately, our timing was just right to make a window where I-80 was open.

Chet and Gabe made it home safe and sound and after two days back at home, Chet and Gabe headed back over for the last hospital stay for several months – God willing.

Thank God we do not have any scheduled hospital visits until about July.  There is always the possibility that Gabriel would have to go back to Oakland if he got sick, but for the time being we get a break.  And that is very welcomed.

Today, Chet and Gabe went to the clinic and he had a great check-up.  After his check-up he had an intrathecal chemo treatment.  All in all it was a great visit.

Here, well, we are finally having blue skies and warm weather.  This kind of weather just refreshes the soul and spirit.

This week has had its moments of trying times.  Chet and I ask for prayers as our family goes through some transitions and changes.  It’s been another emotional roller coaster of a week, but ultimately, God is awesome in his grace and forgiveness. We are continually reminded that we have to place our faith in his hands and irrespective of the trials in tribulations of the day, we know that we have to utterly surrender our worries, stresses and concerns in Him.  As cliche as it sounds – God is in control.  And, when we make that choice, the choice to surrender our worldly concerns to Him, there is such peace.  The heart is given shelter in a storm.

We’re going to have a couple updates on fundraising efforts, so stay tuned.

Here’s a little photo flashback….from just a few weeks after Rebeka was born when we were camping.  The whole family headed down to Southern California for Chet’s second running of Coyote Two Moon 100 miler.  It was a memorable trip and full of so many special moments.

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