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Posts Tagged ‘kids’

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

Not a bad view or a bad climb.

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

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

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

Stay tuned.  Next hike T.B.D.

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We interrupt your regularly scheduled programing to bring you this virtually live update.

I was going back and forth trying to decide whether to finish up the “Whole Lot of Catch-Up” series or to actually talk about stuff that’s happening now.  And, well, I’ve decided to provide a live and real time post.  Besides, most of the rest of the catching up involves Chet’s running…and that can wait, right?  Absolutely, so the updates on Western States and the Tahoe Rim Trail will come in due time.  Besides, I’m still trying to compile pictures for those posts.  I’m chronically bad at getting pictures at Chet’s running events anymore.

Onward!

As I’ve previously mentioned, Gabriel stared delayed intensification at the beginning of June.  That involved several weekly doses of the “Red Devil” a.k.a. Doxarubacin.  He tolerated the treatments remarkably well as his counts did not drop as we expected.  In fact, they didn’t drop hardly at all through all three of the treatments, which meant that Gabriel was able to be at the finish line at Tahoe Rim Trail, which was a pretty nice thing.

So, given the fact that his counts were holding steady, imagine our surprise last Tuesday when I called down to confirm that all systems were “go” for starting Nelarabine, the next phase in delayed intensification.  And, we were told that his counts were super low (344).  If you haven’t been privy to my detailed explanations of ANC counts or you’ve forgotten, you can get a refresher here.  We were pushed off a week, until today, assuming his counts were high enough (he has to be at least at 750 to start the next round of Chemo).

But, the flip side of Gabe’s next Chemo being pushed off was that we were all home together over the weekend.  And, this was the first weekend in weeks, no, months, that we haven’t had something going on.  Earlier in the week, after finding out that Gabriel wasn’t going to be in the hospital over the weekend, I had thought it would be nice to get out for a drive as a family, like around Lake Tahoe or something like that.

Saturday morning after cooking breakfast, putzing around the house and just generally being lazy, Chet suggested that we go for a drive.  My response was, let’s go.  We loaded up the car with more crap than we’ve ever normally loaded for just a drive.  But, life isn’t like it used to be.  So, now we are loaded with the “kit” Chet’s prepared which includes supplies to do a flush of Gabriel’s central line if necessary, red top wipes (hospital grade sanitizing wipes), Clorox wipes, paper plates, plastic silverware, paper towels, zip-lock bags, hand soap, and more.  We loaded changes of clothes for both kids, blankets, food, drinks, and yes, eventually the children.

We decided to head out and drive over Ebbetts Pass (CA HWY 4).  Just a couple miles before we got to Markleeville, CA, in an open field, Chet spotted a Mamma Bear and three cubs.

Unfortunately, I wasn’t able to get a better picture.  But, there they are in all their glory.  We spent a while just watching the bears up in the field.

Ultimately, we continued on our way, but not without stopping for some pictures of one of our favorite roadside sites along HWY 4.

There’s just something cool about this old homestead long the highway.  Then there’s the old trailer, which is a converted bus. It’s one of those things that just begs for pictures to be taken of it.

After the pictures, it was time to continue on.  We stopped at Bear Valley to grab some sandwiches for Chet and I to eat for lunch.  While Chet was in the deli, I whipped up some PB&J sandwiches for the kids.  Rebeka inhaled hers, only to be promptly puked up just as soon as we got back on the highway to head toward someplace to stop for a picnic and to let the kids run around. Ahh, thank goodness Chet loaded the “kit” because we had sufficient supplies to do an emergency clean up.  And, fortunately, I had packed extra clothes, so after a swift wipe down (Chet also packed the bath wipes from the hospital) and change, we were back in business.

While we were looking for some place to stop for lunch, we came upon Calaveras Big Trees State Park, and decided on a whim to stop there.  Chet and I have often talked about stopping here, we just never have.  So, this was the time and it was a very good decision.

We stopped and enjoyed lunch under the canopy of cedar and oak trees.

Rebeka was telling us some story here.

 

Gabriel was being overly dramatic about God only knows what here.

The kids got together for a picture, and it was completely amicable, I promise that Gabriel isn’t trying to choke Rebeka here. They were having a great time just running around and exploring.

Chet and the kids walk along a large fallen tree.

After a nice lunch, we decided to go to the South Grove and check out the Giant Sequoia trees which are the main attraction at the park.

We headed out for the 3.5 mile hike to view the groves and it was the most worthwhile adventure.  We saw hardly anyone out there and the kids enjoyed their trek.  Gabriel hiked the entire 3.5 miles and Rebeka did at least 2.5 miles of it, if not more.  It was awesome, the kids had a blast, Gabriel was so excited to be out there and Rebeka was beyond filthy by the time we made it back to the car, which made me appreciate the second change of clothes I threw into the bag.

Rebeka balancing on a log.

Beautiful big trees.

Amazing burl or stump, or as Gabriel named it, “the brain.”

She’s only hardly filthy in the picture.

One of the first Giant Sequoia we saw.

Gabriel approaching the base of the first Sequoia tree.

One of the larger Giant Sequoia’s we saw.

 

A little perspective as to the scale of the tree.

Looking up.

 

Inside an ancient hollow Giant Sequoia.

 

 

 

 

Getting out, hiking with the kids and just enjoying life was such a refreshing change.  It’s something that we’ve truly needed and I’m so grateful that we just decided to hit the road.  As I said to Chet somewhere along the hike, the $8 entry fee was the best eight-bucks I’ve spent in a very long time.  The kids had an amazing time, I had an amazing time and it was just awesome.

So, after we enjoyed a weekend as a family together, we were mentally gearing up for this weeks hospital admission. Again, we were surprised yesterday to find out his counts were still too low.  He was only up to 610.  Again we were pushed back for the start of Nelarabine, until hopefully Friday of this week.

We’ll find out tomorrow to find out whether we’re on for the this next round of Chemo.  Chet and I are so anxious to get this show on the road.  Once we start Nelarabine, we start the clock to maintenance, a point in Gabriel’s treatment we are all to anxious to get to. The difficulty with this phase of the treatment is that we’ve been able to feel somewhat normal, but not able to fully relax due to the fact that we never know were we are at in terms of Gabe’s immune system.  There’s a lot of uncertainty and associated anxiety.  We’ve tried to live a normal life, but no matter how close to normal we try to get, we just cannot dismiss the fact that we’re not there yet.

We have this hope and expectation that once we get to maintenance, low ANC counts will be few and far between.  At that point, Gabe will be able to start back at school.  We’ll be able to have a bit more of a normal social life as a family.  Life won’t be constantly in fear of an infection.  Now, in reality, Chet and I both acknowledge that our expectations are probably a little inflated at this point in time, but hopefully we’ll get there in time.

Until then, we just continue looking forward.  All will come in due time, and we are working on exercising patience and discipline.

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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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Rebeka is often obligated to playing second fiddle around here too often as of late.  Unfortunately, it’s just the nature of the animal we are dealing with at this time.  However, it doesn’t mean I can’t dedicate a little time here to my beautiful little girl.

Before she was born, we didn’t share her name.  Instead, we called her “Rock Star.”  It was awesome, when someone would ask Gabriel what Rebeka’s name was, he’d say “ROCK STAR” in a dramatic rocker sort of way.

From the moment Rebeka was entrusted to us, she’s been full of life and fun.  A little adventurer from the very start.

The one thing that I always find myself doing is just gazing into her blue eyes.  She has the prettiest blue eyes, in my humble opinion.

Over the last two years, I have grown to appreciate this little girl and her inquisitive personality and experience how different she is from her brother.  While they are similar in so many ways, they are incredibly different at the same time.

Like her brother, she is always on the go.  And as of late, it is even more difficult to get a picture of her as she will not stop for a picture for more than 2-seconds.  But it doesn’t deter me, and I keep trying and trying.

As much as her brother is ALL BOY, Rebeka is ALL GIRL (I have no clue where that came from) and she loves to be girly.

She is also the most nurturing and sweet little girl.

Here she was making sure her bear had water.

She also love her Rody Horse…both to ride….

To take care of, making sure it has water to drink.

And to be friends with.

Rebeka is always just being silly and funny and loves to dance, sing, and just enjoy those wonderful experiences of childhood, milking every drop of joy and fun out of every moment she can.

But the best part is that she has her brother who she loves and wants to play with, be close to, hug and snuggle with……..

Except when mommy wants to get a picture of the two of them together.  *sigh*

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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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Last night the Northern Nevada Children’s Cancer Foundation (“NNCCF”) hosted their annual St. Baldricks event.  The event helps raise money for childhood cancer research as well as money for NNCCF and their mission – helping families in northern Nevada with a child afflicted with cancer.

Chet and Gabriel were supposed to head to Oakland on Tuesday.  However, a condition of starting Nelarabine, Gabriel’s ANC counts had to greater than 750.  Fortunately or unfortunately, depending on your perspective, Gabriel’s counts were a mere 480.  Moving in the right direction, but not nearly enough to start treatment.  So, we’re put off for his treatment until hopefully today.

The positive about Gabriel’s counts being too low for treatment, but higher than they had been is that Gabriel was able to go to St. Baldricks last night here in Reno.

Pete, the son of our awesome across the street neighbors, Brynda and Mike, got his head shaved in support of Gabriel as well as Will and Liam, fellow Scouts.  Brynda also got some shirts made in honor of Operation Leukemia Elimination, and well, it was just incredible.

It was a bit hard for Gabriel at first.  Our normally incredibly UNshy kid was just overwhelmed by the entire experience at first.  But, NNCCF was kind enough to offer a little VIP treatment to Gabriel, and soon enough he was relaxed and taking it all in.

And, ultimately, it was just Fun, with a capital “F.”  We all were just having a good time.

All it all it was great.  We ran into Connie, the nurse practitioner who is part of Gabriel’s oncology team and some other friends.  And, I came |—–THIS—–| close to having my head shaved.  But, amid vehement protests from Chet, I submitted (don’t ever let him say I’m not a submissive wife or woman).

It was lots of fun and just awesome to see the community support out there.  Thanks Reno, Sparks & Carson for supporting kids with cancer!

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