Posts Tagged ‘joy’

Yes, I did just quote Joe Dirt. And, yes, I will freely admit to loving the movie.

Life’s a garden, dig it!

Image from http://www.themoviedb.org/movie/10956.

Anyway, things are moving along for Gabriel.  We’re starting to see a more frequent occurrence of morning nausea.  But, the Zofran does the trick in a jiffy and he’s back to his happy normal self within minutes, literally.

Yesterday, Gabriel had his first spinal tap/intrathecal chemo here in Reno followed up by starting week 2 of his ARaC and 6MP (a.k.a. mercaptopurine).  Gabriel has really maintained his high spirits throughout all of this, and for that we are just so incredibly grateful.

It was a relatively easy visit.  Gabriel occupied himself by removing the wrappers on the cheap crayons.

A little while later, Angie the Child Life gal, brought Gabriel a Valentines Day gift.

Then, ultimately, it was off to surgery, recovery and then chemo administration.

Tomorrow Gabriel will be getting another blood transfusion.  His counts are rapidly on their way down, especially his hemoglobin counts right now.  So, tomorrow morning Chet and Gabriel will head into town for a morning refresher, I mean, transfusion.  Hopefully that will hold us tight until next week when we’re in Oakland for his radiation.  He may need another transfusion next week, hopefully not, so only time will tell.

So, there’s the Gabe report.  He is doing great so far.

Thank you so much to everyone for all the thoughts and prayers you have been offering and giving these past couple months.  They truly mean so much, and as you can see, Gabriel is really doing quite well. Chet and I ask that you continue to pray for Gabe, and for us.

As every day goes by, in some ways the path gets more consistent, but right now it’s not any easier for us.  Granted, we’re doing well, but there are those moments when we both just feel utterly overwhelmed by the entire experience.

We never imagined that this would be a path laid before us.  I could have never imagined how difficult this journey would be.  And, it’s impossible to describe and express what it feels like.  There are so many balls that we are juggling and struggling to keep in the air, and so often we have to be reminded that we can’t rely on ourselves to give us the strength, perseverance and stamina to make it through the end.  Through this experience, we are finding ourselves more deeply rooted in our faith than ever.

It is so often remarkable to me how I, through my faith, diminish the angst because I know that the bigger picture items are completely out of my control.  And for me, to not bear the burden of all of this allows me to cope just a little bit better.

Unfortunately, the oppressiveness of the physical effects at this point feel unavoidable.  I never in my life imagined feeling so totally, completely and absolutely exhausted.  The phrase “burning the candle at both ends” has nothing on how this can just sap the very life from you.  And, that is my struggle at this point in time.  Hmm, maybe I need a blood transfusion.  Just kidding.

But, I know that for us, this too will pass.  Experiences, challenges and happenings in this life are placed before us not to hinder us but to temper us, making us stronger and less brittle and more resilient.

The LORD is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the LORD

Palm 23

How right Joe Dirt was – life is a garden, we just need to dig it.  We are given a fertile field of opportunity, and when we cultivate it with love and care, we are rewarded with so much.  It is not easy work, it is tiring.  However, after all the hard work, we are rewarded with abundance.  And, that for me, my friends, is an amazing breath of fresh air.

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It has come and gone, and truly, it was a pretty good weekend.  I think we got a lot accomplished.  But, looking back now, I’m not absolutely certain of that.

Saturday Chet and our friend Scott went out and did a nice 17 mile (give or take) run on Peavine, Chet’s old stomping/running grounds in Reno.  Truckee was able to accompany them, and his foot seems to be doing much better.  He’s got a bum knee I guess is the best way to put it.  But, he did great and none of the guys, Chet, Scott or Truckee were any worse for ware.  Well, I assume Scott wasn’t, but I wasn’t there today to see how he was feeling.

I felt like I got a bit accomplished yesterday.  I got the kitchen cleaned up (amazing how quickly it can all be undone) and the house picked up a bit along with sewing a comforter cover for Rebeka.  Ahh, yes, that time is upon us and we finally decided it was time to transition to the big girl bed.

Rebeka’s been able to crawl out of her crib for a while already, but it was infrequent.  She also has a very controlled manner of dropping out onto a nice carpeted floor.  But, she was generally content to just chill in the mornings.  But, this past week we were having more incidents of her climbing out coupled with one night her climbing out, leaving her bedroom, and being almost all the way down the stairs to the living room at around 2am.  So, we decided it was time to move into the big girl bed.

Our friends had given us their daughter’s old bed when she upgraded a while back, which we were extremely grateful for.  So, yesterday after Chet’s run he stopped at my parents storage unit and picked up the bed.  Today was the big transition day.

It started with totally repainting Rebeka’s bedroom a bright green color from a pale yellow color.

Ultimately, we’ll replace the trim and I need to clean the carpet, but it’s MUCH better than it was.  Got the room painted and redecorated before noon!  Not too shabby.

I am very happy with how it turned out.  So, once I finish putting a hard coat on the switch plate covers and Chet replaces the sockets and switch, all we’ll have left (besides the trim) is artwork.  But, not a bad room for our little big girl now.

And of course, what’s the first thing you do when your 2 and you get a big kid bed….JUMP of course!

After Chet and I got Rebeka’s room done, Chet headed out to restock our firewood stores near the house, since we might be getting some weather.  Gabriel worked hard with his dad helping him to stack firewood and moved a ton of kindling for us too.

Not only did he move kindling, but he moved some of the smaller logs on his sled.

He is such a hard worker.  It was just awesome that he felt like hanging out with his dad in the yard today.  All in all, it was a great day.

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Rebeka celebrated her 2nd birthday weekend before last, and I’m finally getting around to posting some pictures.  It was a lot of fun – Chet’s mom, my parents, Chet, Gabriel and I could all be home celebrating her special day.  It made me so happy that we were able to spend the day together as a family and celebrate Rebeka’s birthday on her birthday.

It’s hard as the parent, Gabriel’s care and needs really are the priority, but I want her to feel special and important.  Her needs are very important too, and I’m trying not to push her off for the sake of Gabriel.  It’s a difficult balancing act, but we’re doing the best we can.

Rebeka started off the day in full two-year old mode.

She was 2 and full of a ‘tude.

But, she is stinking adorable.  And was being cute.

Full of mischief and all things cute.

She was starting to come down with something oddly like a cold, even though she hadn’t left our property in over two weeks.  So, I decided to make mini-cakes for her birthday at the last minute to avoid any candle blowing cross contamination.

I wanted to do something cute and fancy…but, well, yah, life comes at you fast.  So, I whipped together some pink and white marbled cakes with a fluffy pink frosting for my little girlie girl.

Rebeka was such a little lady opening gifts.  She even got excited about clothes.  It was so much fun watching her appreciate everything that was given to her.

Then it was time for CAKE!

Which I think Rebeka very much enjoyed.

All in all, it was a beautiful day with my family to celebrate the birth of our daughter.

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We are now one step closer to the new normal.

Chet and Gabriel headed down to Oakland on Monday to start the first of seven (I believe) nelarabine treatments.  As I believe I previously mentioned, nelarabine is a drug that they have found specifically targets the subtype of leukemia Gabriel has.

The first night went smoothly.  Gabriel tolerated the treatment very well, and well, we just feel incredibly blessed.

For Chet, the week has been a bit of a blur.  As he said on Tuesday, it’s like Groundhog Day, but he’s not Bill Murry waking up to Sonny & Cher every morning.

Tuesday and Wednesday’s treatments went well too.  We are so blessed that Gabriel has tolerated the medicines as well as he has.

Gabriel initially kept himself busy drawing pictures and playing with playdough.

But, then Gabriel felt comfortable going to the play room and he’s been spending a lot of time there.  He painted a poster that the staff loved so much that it is going to be framed and hung in “5 South.”  They snatched it away before Chet could get a picture of it.  So, once it’s framed and hung, we’ll take a picture of it to share.

This time around, Gabriel is in a shared room.  That could have been not so good, but Gabriel’s roommate is a young man who apparently is delightful!

Isn’t he adorable!  He’s receiving chemotherapy treatment for cancer too, but a different type of cancer than Gabriel.

So the days have been spent playing Lego’s Star Wars on the PS2, playing in the play room, showing off the pocket knife to other kids in the play room (would you expect anything else from Gabriel?) and just having a good time charming all the staff at Children’s Oakland.  Gabriel has even had a couple of the nurses that we had during his original stay in 5 South.

But, probably one of the most special moments came when Gabriel was able to give a gift to Dr. Annie.  A little background – Dr. Annie was the first doctor we saw when we arrived at Children’s in Oakland on December 23rd.  We were in the E.R. and in came this doctor.  She was very sweet.  Little did we know the true depth of her heart and her absolutely awesome bedside manner right away.  Later we learned that she was a Fellow with the Onocology group at Children’s and her rotation with in-patients would be over on December 31st.  We were bummed.  Afterall, it was Dr. Annie who taught Gabriel the “Fish Face.”

And it was Dr. Annie who really was the first person to crack Gabriel’s shell during that crucial first day at the hospital.  She was a compassionate and amazing person. And, we have it on good sources that the impact Gabe had on her was similar.

After we left Children’s at the beginning of January, Gabriel wanted to get Dr. Annie a special gift.  That was one of the people we were shopping for at the mineral store on that special shopping day out.  Today, Gabriel was able to see Dr. Annie and give her his gift.

On December 22, when we were told Gabriel had leukemia, the world was crashing down around us.  I couldn’t see the next day or even two or three days after.  All I thought on that day was that I was very likely going to loose my child.  Oh, I knew the survival rates for leukemia were good, but it was heart wrenching and crushing to get that kind of news.

But, through the whole process, God has held Gabriel, Chet and my hearts.  We can sit and try to figure out the “why” and the “whats.”  But, we will never know “what” caused his cancer and we’ll never know “why” he was afflicted.  And to try to figure out those questions is an exercise in futility.

However, many things have been made very clear to me and Chet.  What we have learned is that there is a bigger purpose behind his diagnosis.  We have had the opportunity to meet the most amazing people, and it all started with Dr. Annie.  We would have never had these experiences, relationships, and opportunities had this never happened to us.  And quite frankly, I don’t think I would want to miss out on these relationships and opportunities.

Don’t get me wrong, this is not an easy journey.  It is filled with heartache.  But, we have already been so blessed with new relationships, perspectives and opportunities, all of with we would have never had if this hadn’t happened.  And Gabriel is able to touch the hearts and souls of many more people because of this.

Gabriel has a reputation that precedes him.  He is known as the “little cowboy.”

Gabriel puts on his duds and heads to the doctors.  He truly is a little cowboy.  And, his personality just fits and brings people from all around to meet him.  But, why not, his smile and laugh is truly contagious!

I mean, I know I’m his mother, but dang, he’s stinking ADORABLE. And fun, I just love his personality.

Today was somewhat bitter sweet for me.  I really miss my boys.  They’ll be home tomorrow, and that will be glorious to have them home even if it’s just for the weekend.

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Neutrophils are the most abundant type of white blood cells and form an essential part of the immune system.  You see, as I understand it, we have two arms of our immune system, an innate immune system and an adaptive immune system.  There’s a lot of technical mumbo jumbo about the functions of the different immune systems, but in the “idiot’s guide” terms I can understand, the neutrophils and your innate immune system is what give you the first line of defense against all things new and old and the adaptive immune system is your immune systems memory bank and and provides the arsenal for things that you’ve dealt with before.

Does your head hurt?  Mine does sometimes when I try to wrap my brain about these things.

Anyway, I’ve talked in the past about Gabriel’s immune system and his ANC (absolute neutrophil count) levels and how those impact what he can do.  The ANC is a mathematical calculation looking at his innate immune systems ability to combat infection.

Gabriel’s ANC levels tell us whether he has the ability to fight infection and to what extent.  Basically, it’s our litmus test on what activities we can reasonably let him do.

Yesterday, Gabriel went back down to Oakland Children’s Hospital for another physical examination and his final bone marrow aspiration for the induction phase of his treatment.  He also had a lumbar puncture and intrathecial chemotherapy treatment.  During Gabriel’s physical exam, Chet was informed that Gabe’s ANC count from Monday was over 2000.  That was awesome news for us, it meant that Gabriel’s immune system was rebounding very well (he was still under 250 when we left Oakland two weeks prior) even after his last chemotherapy treatment.

When Chet told me this, I was just so happy.  I knew it meant that Gabriel would be able to do more things around the house.  It also meant that the physicians were comfortable giving Gabriel the all clear to go horseback riding, spend some time working in the yard and garden, and to do whittling.  Things we’ve been having to say “no” to lately.

After Gabe’s procedures, Chet was given the results from yesterday’s blood tests (he gets blood tests twice a week right now) and his ANC level was over 4000.  That’s just awesome and absolutely the power of answered prayers.

With and ANC count of over 4000, we don’t have to be confined home.  Gabriel was able to walk around and leave the hospital without wearing a mask.  It just is awesome to not feel as though you’re walking on egg shells with him afraid you might be carrying an errant germ that is sticking around somewhere.

In celebration, we’re going to head to the mineral store tomorrow.  Gabriel has a couple special purchases he would like to make.  With the news, I’m just so filled with joy and amazement at how well his body has tolerated the treatment so far.  He’s just been so blessed by the caring thoughts and prayers of everyone.  Thank you so much, we truly appreciate your support and love.

Unfortunately, Chet didn’t take too many pictures, so I don’t really have any to share (the three he has are on his phone and well, I didn’t get them transferred).  But, with such awesome news as this, who needs pictures?

Next week we head back to Oakland for a consultation with the Radiation Oncologist and Gabriel will begin his next round of treatment – the consolidation phase.  We’ll find out next week which treatment plan he gets randomized to.  It will either be an overnight admission or a five-day admission.

However, in the meantime we’ve got fun plans including horseback riding (hopefully), mineral shopping, movie watching and snowshoeing.  What a great weekend to look forward to.

We have been blessed with such an amazing kid who providing many opportunities to learn new things.  Don’t believe me?  You now know a whole lot more about neutrophils than you did before this all happened, don’t ‘cha.

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