Consolidation & Radiation

We are making it through the consolidation phase of Gabriel’s treatment, and we’re at a low, so to speak.

The consolidation phase of treatment involves two cycles of various drugs.  As I believe I’ve previously talked about, Gabriel is part of a clinical study, and he was randomized to an arm where he is given a newer drug, nelarabine, which is expected to be more effective at eliminating the leukemia cells in his body.  In addition to the nelarabine, he gets other chemotherapy drugs, which unfortunately decimate his immune system.  Right now, we’re at a very low point in his treatment.  Essentially, the kid does not have an immune system right now and I hate that.  His red blood cell counts and platelet counts are also pretty low and he’ll probably have yet another blood transfusion next week.

And Gabriel, subconsciously, showed us what he thinks of cancer.

The past two weeks involved two interthical chemo treatments as well as a blood transfusion last week.  Gabe also got my least favorite med, also known as Peg in the Leg.  Fortunately, this time around he was given the shots while he was under anesthesia for his spinal tap.

Okay, funny story.  Once Chet and Gabe got home from his last spinal tap, etc.  Gabriel went potty and says “WHAT IS THIS?”  “PRINCESS BANDAGES!”

So, Wednesday we headed back to the Bay Area for the start of Radiation for Gabe.  Honestly, from a parents perspective, radiation was rough.  I don’t know whether it’s just the term “radiation.”  Or just knowing that we’re having to do so many horrible awful things to our child in order to get rid of this cancer.  I hate it.

A few weeks back Gabriel got his mask made.  Now we see the mask in full action for his radiation.  The purpose of the mask is to keep his head in place consistently between treatments so that they can perform the radiation precisely.

Once they get the radiation mask in place, Gabriel was such a trooper and just stayed so still for all the procedures.

It’s amazing how the process works.  The machine is amazing and the whole experience is overwhelming.  Once Gabriel was placed, we had to wait outside the room for them to do the treatment.

But it was nice to be able to watch him from the video monitor.

After Gabe’s radiation treatment was done, the weather was beautiful and we headed out to do some sight seeing.  First we drove over the Bay Bridge to San Fransisco.  We were just driving around and found this awesome overlook of the TransAmerica tower.

After we headed over to the Golden Gate Bridge.  It was nice to get out and look around a bit.

Gabriel wanted to hike down to Fort Point, so I took the car and drove around to meet them down at the bottom of the trail.

Got some family pictures.

 

Yesterday was a bit more of the same with respect to the radiation. We did some sight seeing and went out to Alameda to look at the retired ships and showed Gabriel the USS Hornet.  He wanted to take a tour of the ship, and we would have loved to.  But his counts are just too darn low and we can’t risk him being around other people and the like.

It was a pretty rough day yesterday in a lot of ways.  Gabriel is finally showing his frustration with this process.  Sadly, it’s coming out in his behavior with us.  Chet and I often feel as though we’re at the end of our rope.  We hate having to tell him “no” about doing things that we should be able to say “yes” to.  It sucks having to keep him isolated and away from friends.  He misses playing with his friends so much.  The other day all he wanted to do was play with his friends from school or Sam and Julia, and we have to tell him “no.”

The poor kid is just so isolated, yet he really has handled all this so well.  But, he is definitely demonstrating his breaking point with his caregivers, Chet, his grandparents, and me.  It’s such a hard experience as a parent, but just because he’s sick doesn’t mean the rules have changed.

We are looking forward so much to the next phase of treatment where Gabriel will be able to get out and do things with friends more.  But, until then we have one more round of nelarabine, cytoxin and ARaC before his counts will come back for a period of time.  Until then, we are trying our hardest to keep things real for him.

The isolation isn’t something you can prepare yourself for, nor is there any way to prepare you child for it.  And even though it’s only for a few months in the grand scheme of life, these are the important years for him for social development, making lifetime friends, and establishing those relationships.  And he can’t do it right now.  Frankly, it breaks my heart.

We’ll do our last radiation treatment today and then head home for the weekend.  It’s going to be an adventurous ride home with all the rain and snow.  Chet and Gabriel will be heading back here next week for more radiation.  Fortunately, once this is done, we’re done.  No more radiation for Gabriel.  Thank God for that.

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Where Has The Week Gone?

It’s been almost a week since I’ve updated.  Things have been relatively uneventful since Monday when Gabriel received his last spinal tap, intrathecal chemo, and bla bla bla.  We are getting to a point where it is all running together in the brain.

Otherwise the week was relatively uneventful, except Wednesday Gabriel had to go in for his third blood transfusion.  Unfortunately, since it was his first here in Reno, it meant most of a day spent at the clinic for Chet and Gabriel.  They got there at 9:30 a.m.  I took them lunch and hung out for a while and then they were finally released to go home around 4:30 pm.  They say the next transfusion won’t be as long.  We can only hope.

The best part, at least for all of us this week was the SNOW!  Oh, it’s been awesome.  We got about 18″ here at the house, not to shabby.  Gabriel and Rebeka had a blast playing.

Snowshoes ROCK!

It’s been a fun week for all.

This weekend Chet and I were able to get our office remodel almost completed.  We finished up taping and spraying texture on the drywall.  Have I mentioned recently how much I would prefer to pay someone else to do that work.  Oh-well.  Then today, while Chet was running, I got the primer on and the first coat of paint on.  I did not expect the walls to suck up an entire gallon of primer.  Whew.  We had 3/4 of a gallon, and ol’ Murphy was at his best with his law, and I had to make a run to Home Depot for another gallon with only less than 1/4 of one wall left to prime.

But, it looks great.  Tomorrow, God willing, Chet will have time to lay the new hardwood floor and then we’ll have the trim left to do, but otherwise it will be nearly complete.  My job will be to get it set up like an office.  One more project nearly complete.  Pictures will be up once I remember to take some in decent light.  I have to say, the office colors are very masculine – very Chet.  That’s not a bad  thing.

Well, that’s pretty much all there is to report from here.  Things are pretty mellow.  Gabriel goes back in on Tuesday for another spinal tap and intrathecal chemo along with a few other chemo drugs.  Wednesday we’re going to head back to Oakland for the rest of the week and radiation for Gabriel.  Onward we go.

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Humor

There’s a couple of inside jokes in this house. Well, they may not be so “inside,” but they are our jokes.

One of the things we are psychotic about is hand washing.  The one thing is that poor Chet’s hands are just getting TRASHED.  His hands are all red, dry and cracked.  So, he’ll say “I’ve been putting the lotion on.”  To which I respond something like this….

Snicker-snort.  Yah, we’re kind of weird in our house.

Anyone have any suggestions for REALLY good lotion?  We’re doing corn huskers lotion and various other types with not great success for Chet’s crazy over washed hands.

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“Keep On Keepin On”

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
Forever.

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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The Weekend.

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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A Taste Of Consolidation

Gabriel officially began the consolidation phase of his treatment on January 31 starting with a five day hospitalization and his nelarabine treatment.

Before Gabriel started his nelarabine he got another day riding with Charlie and instruction from Petra.

A friend of Petra’s had a kids saddle that she’s lending us to use, which is awesome.  Petra gave Gabriel some exercises to do while riding Charlie.

There was a lot of time for the two to get exercise out in the arena.

So, on Monday, they headed down and Gabriel and Chet got checked into the hospital and they started his nelarabine treatment.  During the week, Gabriel got one of our FAVORITE nurses, Lauren (have I mentioned how awesome she is?).

Gabriel also got another awesome, and new to us nurse, Chuck.  Chuck was super cool and even autographed a picture of himself from back when he was a professional motorcycle racer.  Pretty cool, huh.

The week went by pretty quickly, all things considered (at least from my perspective) and Chet and Gabriel made it home late Friday night.

We got to spend a nice weekend at home and Monday morning, Chet and Gabriel were off super early to head back to Oakland for another overnight admission and administration of his cytoxan and ARac.

The boys made it home Tuesday evening and it’s just been a whirlwind since then.

Gabriel is doing amazing.  Chet and I…well, we’re hanging in there.

Life is a lot like this…

It is amazing.  Chet has run many 100 mile races staying up all night or for two nights while enduring extraordinary physical demands.  I’ve done many many all nighters and spent days with little to no sleep.  Yet, right now, we are both amazingly spent.  Emotionally, physically, psychologically, and mentally spent.  We are totally spent.

I’ve been thinking a lot of this sentiment from the 80’s…

But, honestly, it’s been these songs that have provided fulfillment for my soul and offered strength to me during these times where honestly, I feel so depleted.

And one of my most favorite artists, JJ Heller.

I know that for Chet and I that this is just part of the journey and that this time will pass.  Neither of us want to wish our days or lives away, but we often look at one another and just look forward to when the demands of all this are not as great and we have those moments to take a deep breath.  We are so have been blessed by so many good friends and loving people in our lives.  With that, your encouraging thoughts, continued prayers, and constant support help keep the wind in our sails.  Thank you.

P.S.  As always with our family, Rebeka TOTALLY cracked us up (almost not in a good way) tonight.  So, I’m getting her ready for bed tonight and I see this big ‘ol BRIGHT GREEN thing up her nostril.  Chet was helping to get all her blankets in place, I ask him, and his response in a very exasperated tone was “It’s a pea.”  So, we tried getting her to blow it out.  We tried pushing it out, and that seemed to only make it travel further up her nostril.  Finally, Chet grabbed the tweezers and with a little delicate digging along with strategic nostril flange opening and pressure resulted in the successful extraction of a green pea from Rebeka’s nose.

Life is always an adventure here in the Fairbank household.

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Happy 2nd Birthday

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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One Step Closer.

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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