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Archive for April, 2011

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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Happy Easter

This Easter Sunday, we as a family celebrate the resurrection of Jesus Christ and the fulfillment of God’s promise of an eternal life, Chet and I reflect on the many blessings we’ve experienced, particularly these past several months.  As difficult as the journey is, it is filled with so many treasured experiences, many of which we are certain will not be fully understood anytime soon, if ever, in this life.

This morning, Gabriel got up and out of his bed on his own.  We’re eating slightly more and threatening enough to start seeing a sufficient consumption of fluids to hopefully keep us out of the clinic tomorrow for an I.V.  Soon, we’ll color eggs and this afternoon we’ll have an Easter celebration with my parents.

Wishing everyone a blessed and glorious Easter.  Christ is Risen!

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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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Not a whole heck of a lot to report around here.  Gabriel is doing very well.  We go back to the clinic tomorrow for another round of chemo – but just Vincrstine this time.  It should be a relatively short visit and God willing, Gabriel won’t have to have another transfusion.  They were concerned about his platelet counts, but he wasn’t SO low on Monday to warrant a platelet transfusion just then.  They decided to wait and see if his body starts producing his own platelets this week.  Tomorrow’s blood draw results will let us know where he’s at.

We do know that his ANC (absolute neutrophil count) is super low.  It was roughly 250 on Monday, and it has likely dropped lower, so we are in absolute quarantine mode at the moment.  But, hopefully this will be the last week (give or take) of this for a few months.  While we know his counts will come back up (they have to for him to start the next round of treatment), the question is where they will stay over the course of the next couple of months when we go into “interim maintenance.”  We should start interim maintenance either the last week of this month or the first week of May.  This is kind of a really big deal for us, as the start date for interim maintenance is the marker date for when he’s 100-percent done with his cancer treatment.  Three years from that date, we’re D-O-N-E.  So, that’s a pretty big deal for us since it gives us a definitive end date.

Otherwise, right now, it is a lot like being stuck in the doldrums.

I’m going to start working on a video for Gabriel in all my crazy amounts of free time.  So stay tuned.  Otherwise, things are just moving along, slowly, but moving along.

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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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