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Posts Tagged ‘update’

Despite Gabriel’s cancer diagnosis and treatment, certain elements of our lives have had to stay normal, and a major component of our lives for the past decade has been Chet’s ultra running.  Not only has it been a healthy outlet for Chet, but it has brought us into contact with some of the most amazing people and through those contacts, we’ve made incredible friends.  As you may or may not know, Chet’s transitioned from running primarily 50k and/or 50 mile events during the first 5 years of his ultra running life to primarily 100 mile events.

Last year, Chet ran the Western States 100 and he again was selected, through our local running club’s lottery, to run the race.  Chet found out of course before Gabriel was diagnosed at the end of December.  After Gabe’s diagnosis, Chet and I had a bit of soul searching to do regarding his running for the next year.  However, running is such an important component to our lives, and ultimately, it really was a no brainer – of course Chet would be running.

While we were all dedicated to supporting Chet as he trained, this year his training took a new tone and style.  Meaning, Chet basically got his training completed on the weekends.  But, he has been training and running.

One of our “standard” events every year is the Silver State 50/50.  I run the Ranch Creek aid station and Chet runs the event.  This year, Brynda, our neighbor helped me out at the aid station, and I have to say it was a jolly good time.  Brynda definitely kept things interesting!

We have one of the most beautiful locations on the course to set up our aid station, and oooh, yah, there’s a little story behind that.  With all the distraction I’ve had this year, I didn’t give a single thought to where my aid station was until after I was driving up there.  Clearly my brain cells were totally malfunctioning, because I started setting up at the wrong aid station.  My gut kept telling me I was at the wrong location, but I didn’t trust my gut.  Fortunately, we were alerted (thanks Lon) with plenty of time to break down, relocate and set up again.  Thanks to Brynda for indulging my brainless self that day.  Haha.

Brynda was an incredible volunteer and so helpful to me and the different runners.

Chet ran the 50 mile event and looked amazing!

Overall, it was an awesome day.  Not only did Chet and I enjoy having a bit of our normal existence, but Gabriel’s counts were high enough that he was able to go to the pre-race event and hang out at the finish line waiting for Chet.  It was a blessed and beautiful day.

The rest of May and June didn’t involve too much excitement for us.  We transitioned from the interim maintenance phase of Gabriel’s treatment to delayed intensification.  But, fortunately, Gabriel’s little body tolerated the methotrexate he was given that we had the opportunity to have one very special event, and it involved the Reno Aces.  Stay tuned, part 3 of A Whole Lot of Catch Up will be filled with amazement and excitement, I promise!

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Not to be confused with ketchup.

Gosh, where does one begin?  We’re in the thralls of our last major phase of treatment with Gabriel.  Next week we get into the super nasty part, but next week, we’re that much closer to the home stretch.  Honestly, over these past few weeks, while there isn’t a day that goes by that I don’t remember that Gabriel has cancer and I worry and think about all of the implications for today, tomorrow and into the future; at the same time our existence has finally not centered around cancer.  We’ve actually had the opportunity to have some of the elements of our normal lives.

Granted, our new normal is a extremely different reality than a year ago; we have been able to just relax and go on with those elements of our lives that were there pre-cancer.

So, with respect to Gabriel – he’s doing GREAT!  We are so truly blessed by his resilience and easy going nature that has made the most difficult experience of our lives that much easier.  His treatment has gone amazingly well.  We’re almost half-way through the delayed intensification phase of his treatment.  By the grace of God, this has gone incredibly well.  So well in fact, that you almost can live as though you don’t have a child with cancer.  The operative word being “almost.”

Don’t get us wrong, not a day goes by that we don’t know that we have child with cancer, but we just haven’t had to have our guard up as much.  Sadly, that all came to a rapid end on Tuesday this week.  Gabriel was scheduled to begin one of his five day hospital admissions this weekend for getting the drug that is part of the clinical study, Nelarabine.  In order for him to start this phase of his treatment, his ANC has to be at least 750.  So, Tuesday I make the routine phone call to the Oakland oncology clinic to do “yada yada, yah his counts are fine, bla bla bla” call.  When Connie, Gabe’s nurse practitioner called me back and said, “oh, no his counts aren’t good” I was floored, literally.  Actually, literally, I said in a most dramatic manner (think Oreo cookie commercial) “SHUT UP!” Gabriel’s counts were only 344!  Remember, if his counts are under 500 his immune system is extremely compromised.

This was a tremendous shock to Chet and I.  Gabriel has been just acting amazing lately – like the awesome little boy we know and love.  He hasn’t given us any indication that his counts had come down.  It makes sense though as his hemoglobin (red blood cells) and platelets haven’t dropped as much as his white blood cell count (the immune system).  So, because in the past when his ANC has dropped, we’ve suspected it because he has been more lethargic and bruised more easily because his platelets and hemoglobin dropped along with his white blood cell count and ANC.

But, while we were able to be “normal” we just enjoyed some comforts of life.  Gabriel and I went out and caught a movie – Cars 2.

It was AWESOME.  Okay, it was awesome for me, cool for Gabriel.  He was very uncomfortable at the movie theater. Sadly, we’ve created some paranoid feelings due to our crazy protective natures.  But, heck, that crazy protective nature has saved us a lot of grief these past several months, so it is what it is.

Anyway, Gabriel is now scheduled for his 5 day admission next week.  Once we start that we are a mere 5 weeks away from Maintenance (assuming his counts come back up in time).  And, he’ll be able to start school again this fall, though a few weeks late it looks like at this point in time.

So, I’ll spend a few posts doing a whole lot of catching up here, including talking about Chet’s running (there’s three races to get everyone up to speed on), fun with Rebeka, and a few items from my own summer.  Lots of love to everyone.

 

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Gabriel is heading in to the final weeks of the interim maintenance phase of his treatment.

These past several weeks have been an interesting emotional roller coaster, and I just haven’t been able to find the pleasure in talking about the journey.  I have just felt empty.

It might be just be a bit of emotional burnout.  Maybe since we’ve reached somewhat of an slower phase of treatment and have been able to enjoy some relaxation of our neurotic germophobic existence, we’ve been able to just to feel a bit like ourselves.

So, how’s Gabe?  He’s doing well, all things considered.

We had yet another scare of central nervous system involvement due to a poorly prepared slide of Gabriel’s spinal fluid from a spinal tap here in town.  As a result, we had to make another trip to Oakland for a re-tap so that we could rule out CNS involvement.  Not only does this cause additional stress for Chet and I wondering of there’s something that has gone south.  But, it also results in duplicate expenses for our insurance and additional costs for us, as we end up having to make an unplanned trip to Oakland.

Fortunately, the oncology doctors from Children’s Hospital Oakland (CHO) are awesome, and they take amazing care of Gabriel and us, and the do over’s are not at all related to them or their quality.  And, because we know that the reliability and consistency of the results obtained from the procedures performed at CHO, Chet and I have decided that we’re going to have all the remaining spinal taps done in Oakland.

But our last trip to Oakland was great.  We ended up staying at a nice place (our regular digs were sold out).

Chet, Gabriel and I enjoyed a nice stroll along the waterfront.

We got to see an egret on the walk.

And Gabriel picked me some flowers along our stroll.

Gabriel has been getting escalating doses of methotrexate, and he tolerated the first 4 doses very well.  We think the last dose finally took a toll on him and that his counts dropped after the last dose.  We will find out tomorrow how he’s doing and what affect the last round of treatment had on him.

Isn’t he cute passed out from anesthesia?

We as a family have been struggling greatly with Gabe’s eating.  He has lost a considerable amount of weight and we’re greatly concerned about his well being.  At the last appointment, the doctor’s didn’t mention anything about his weight loss but the attending physician wasn’t one of the regular doctors who has been seeing Gabriel since he was diagnosed.  So, I’m not certain if she looked at the trends with his weight.  So, we’ll learn more tomorrow.

We’ve also been dealing with a lot more puking as of late.  Gabe’s been having a very difficult time keeping solids down, which has just made the challenge with respect to his eating greater.  Our journey continues.  Operation Leukemia Elimination continues, and the battlefield is constantly filled with new challenges and experiences.

A few weeks back, it occurred to me that how can different people compare their own struggles and difficulties?  The other night, I was reflecting a lot of this journey and thinking about the impact it’s had on all of us, and how it relates in this world.  As I was laying in bed I thought about how my feelings over the past several weeks.  And while, the stresses, challenges, and heartache I feel, it doesn’t make our challenges greater or more insignificant than any other person’s challenges.  I’ve had several friends apologize to me when sharing their own difficulties being addressed in their lives, saying that what we’re dealing with is so much worse.  But, is it?

Each of us are very different people.  We are all unique creations, with distinct emotions, different tolerances, and different life experiences to draw upon.  What may bring me to my knees emotionally, someone else can take in stride.  And, just because we’re dealing with what we are, does not in any way diminish the significance or importance of another’s experiences.  The experiences are simply different.

So, it’s time to feel excited again.  We’re getting closer to maintenance.  It’s almost summer (well, according to the calendar).  And we’ve got lots of adventures waiting for us over the summer…and a lot of it doesn’t involve cancer treatment.  It’s time to be refreshed and rejuvenated.

I’m finally feeling excited to share with everyone things that are going on in our lives outside of treatment.  I need to share about the Silver State 50/50 and more about the golf tourney. Chet’s got the Western States 100 miler coming up here in just a few weeks followed by the Tahoe Rim Trail 100.  There are so many cool adventures coming!  I can’t wait to bring you all along with us.

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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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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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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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Alas, I promised everyone that I would continue on with more about Gabriel’s hair loss.  And, I will not disappoint for fear of being chastised.

The radiation eradicated his hair.  It was starting to grow back after he first started loosing it and then WHAM…I guess that is how you would describe massive clumps of hair coming out.

Fortunately, Gabriel was really cool about it.  He pretty much asked that we cut his hair again.  We suggested shaving it close as close as possible and he was good with it.  So, this was the before image –

And, off it came.

And, Chet being the good Dad, he also joined Gabe in his hair adventures.

And Chet after.

And the two boys, with their matching hair cuts.

So, there you have it – the hair loss update.  I offered to shave my head too, but Gabriel wasn’t too keen on the idea.  I’m okay with that given it might be a bit awkward with my job.

I know there is so much more to update on…its just by the time the evening comes I really just am too tired to think to hard about much of anything.  Tonight is no exception.  But, I’ll give it my best.

Tuesday, Chet and Gabriel will head back to Oakland for another hospital admission for the next round of nelarabine.  This trip, Chet and I are splitting the time in the hospital with Gabriel – we will each take two nights.  After Gabriel and I get home on Saturday, Gabe will have two days here and then he and Chet will head back down to Oakland for one more overnight hospital admission for cytoxian.  And, hopefully, that will be the last of our hospital visits for several weeks.

This weekend we did a “soft launch” of our fundraising efforts.  While fortunately, Chet and I have been blessed with tremendous family support as well as insurance, there are certain elements that have not been covered by insurance and the cost of traveling back and forth to California has truly began to take it’s toll.  We have put together a medical trust fund for Gabriel and we’re doing some things to provide opportunities for people to support Gabriel.  Part of Chet and my commitment is that once we’ve been able to address the expenses and bills that we’ve incurred thus far as well providing for the remainder of his treatment, any remaining funds in the medical trust fund will be donated to a qualifying 501(c)(3) organization which provides assistance to families in our area who are faced with the diagnosis of a their child with a life threatening illness.  While Chet and I are committed to supporting leukemia awareness and fighting for a cure for leukemia – we’re well aware that there are many different catastrophic illnesses children can be diagnosed with besides ALL.  Our hope is that we can pay it forward not only with what we can put together, but that our fundraising efforts will provide sustainable contributions to whichever organization we ultimately select.

I hope to finish the details in the next couple days – so stay tuned for a formal “official” launch of Operation Leukemia Elimination – Battle For Gabriel.  Here’s a tiny little teaser for everyone…

Finally, to provide a little update.  Last Tuesday, Chet and I faced one of the certain to be many speed bumps in this journey.  Of course, just as we were feeling more comfortable and normal in all of this, we received a call from one of Gabriel’s treating oncologists.  You see, every time they do a lumbar puncture and intrathecal chemo treatment on Gabriel, they take a sample of the spinal fluid.  When those tests are done here in Reno, the clinic makes a slide here and then sends the slide to Oakland for their pathologists to review.  Apparently on the two slides that were taken here the Pathologist found cells which were not expected.  He notified the oncology doctors who then did a more close examination.  As I understand it – and we’re still waiting for better information, as this was all communicated through a brief telephone call – after further review, only one of the slides appeared to have a “blast” cell, essentially a leukemia cell.

Now, understand that it can be very difficult to discern different types of cells, particularly on a limited sample, as was the case with this review.  And, this is confirmed from Chet’s sister, Katie, who is a microbiologist working with cancer cells.  Moreover, the doctor was very clear about wanting to keep us informed, but not wanting to alarm us.  So, they are going to do another lumbar puncture, this time without a chemotherapy treatment, when Chet and Gabriel head back down to Oakland for his cytoxian treatment.  They will take the sample and immediately send it out to the pathology lab for a full examination.

This kind of stuff just takes the wind out of your sails.  But, we have to keep in perspective that he’s had the radiation treatment, and the purpose is to kill off any errant cells which might be floating around.  However, it still is just a bit unnerving.

I presume there are a lot of questions floating around out there in the readership.  What does it mean?  Why?  Do you expect the cells?  In a lot of ways, we don’t have those answers yet.  Next week we will get more answers.  I can do a little explaining however.

First, when Gabriel was diagnosed, his body was absolutely inundated with leukemia.  His whole blood was effectively 97% leukemia cells.  So, when they did the very first lumbar puncture, with his level of infection, they expect that there will likely be some contamination from the tissue the needles passes through to get to the spinal fluid.  As such, when he was diagnosed, they found a very small number of lymphoblasts in his spinal fluid.  Due to the small number and his infection level at the time of diagnosis, they have to make certain assumptions, and one of those was that the lymphoblasts found in the spinal fluid sample were due to cross-contamination, not necessarily present in his spinal fluid.  Based upon those assumptions, the number of lymphoblasts present at that time, and other factors is how they determine what his risk level is and the associated treatment plan.

Now that they think they may have identified a lymphoblast in his spinal fluid – that may be a game changer, but it is unlikely.  At this point in time, as I can understand, they need to go back and reexamine his spinal fluid.  Its just like going back and reassessing whether the assumptions were accurate or inaccurate.  And, even if those assumption were inaccurate – say the presence of lymphoblasts in his spinal fluid wasn’t solely from cross-contamination – the doctors have to determine that it doesn’t change the treatment plan.

The likely outcome will be no change.  Even if there were some lyphoblasts present in his spinal fluid at the time of diagnosis, the numbers have to be above a certain level to result in a change in his treatment plan.  Basically, the doctors are just affirming that the rules haven’t changed even if the basis the assumptions were made are inaccurate.

At the end of the day, this is all likely a big ‘ol non-issue.  But, it just scrapes at sores in Chet and my heart that aren’t nearly close to healing.  It is so difficult to walk this path at times, and to have the information come at you just when you start to feel comfortable feels a lot like someone pulling the rug from under your feet.  You look at Gabriel, and other than the kid having no hair, you just can’t fathom that he’s sick.  He doesn’t look sick.  He doesn’t act sick.

I can’t express the times where I just sit there and shake my head, unable to process that this is happening.  Unable to comprehend how this could happen to a child.  Why a child should have to face such adversity, such pain, so much when they should be riding their bikes, playing with friends, going to movies, going to school.  I have always known and understood that life isn’t fair – but, really, it is so incredibly unfair that a child would have to endure this, or more as many other kids do.  There isn’t a day that goes by that I don’t recognize that we could have it so much worse.

Yet, despite the heartache, the added stress in our day, Chet and I know that we simply have no control.  We have to trust the doctors.  But, most importantly, we have to trust God to handle this.  And, when you give up feeble attempt at controlling any of this, it affords so much relief.  I’m not going to pretend that all the stress, all the heartache, all the anxiety goes away.  It doesn’t.  But, for us, when we realize that we don’t have a mustard seed of input into whether there are lymphoblasts or not in Gabriel’s spinal fluid – well, it just takes that much pressure off so that you can look ahead and the rest of that day, to tomorrow and the day after.

In short – Gabriel’s doing awesome.  He’s an amazing kid who continues to be just demonstrate an incredible amount of strength and fortitude through all this.  For that we are so blessed.

We are so grateful to all of our friends and family who have given us so much support throughout this process.  Sometimes when I look back and realize we have only been not even three months, I can’t believe it, it feels like a lifetime already.  But, each day gets easier.  We will have speed bumps, but they are just that something that jars you when you’re not paying attention, that’s it.

To all of you who are reading this, please continue to pray for him.  The power of prayer is awesome and immeasurable.  The love and support each of you have given us, thank you.  Even though we are horrible about sending thank you notes, making telephone calls and the like – we are just so blessed to have each of you in our lives, thank you.

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