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Archive for March, 2011

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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We have officially launched “Operation Leukemia Elimination – Battle for Gabriel.”

For more information please check out the new page tab at the top or by clicking HERE.

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Gabriel and I are back at the hospital and things are going smoothly so far.  We had a little bit of a wait before we got admitted, so Gabriel just was silly passing time.

At first Gabe was just solemn huffing and puffing a lot behind his mask.  But, then his mood improved and he started doing a little shimmy dance around the waiting area.

We finally got admitted and assigned a room.  Once we got settled, it was pretty quick and Gabriel was just being his normal self, a lot of smiles mixed in with a lot of attitude.  Unfortunately, the “tude” doesn’t photograph well.

And, well, sitting around a hospital isn’t THAT exciting while waiting for your chemotherapy treatment to start, so it wasn’t long until he was keeping himself occupied playing Lego Star Wars.

And having fun at the same time.

Finally, around 9:30 last night they got his Nelarabine treatment started.  It was just another day at the ranch taking the chemo.

The Sandman found us around midnight and all in all it wasn’t too bad of a nights sleep.  This morning we woke up to rain showers developing into rain.  Just another day in the hospital here in Oakland.

This whole experience is just truly humbling.  I think Gabriel expressed it as well as anyone can the other night as we were driving home from the St. Baldrick’s event.  We were talking about how difficult the experience is, that it’s not fair that children have to go through this, and that cancer is a pretty horrible disease.

However, despite all that he has been through, Gabriel says:

“I’m a tiny tiny bit glad I got this cancer.”

He continued:

“Because, if I hadn’t I wouldn’t have learned so much.”

Gabriel is absolutely right.  As a family we are a tiny tiny bit glad this happened.  We’re gaining so much right now, and I know we will continue to gain so much as a result of this experience.  We continue to meet people we’d never otherwise have the pleasure of getting to know.  We’re learning things about the amazing human nature of people who are friends and family. We’re learning, continually, about the grace of God.

And, even as Gabriel experiences the physical toll of the cancer, the emotional and psychological toll of isolation, even he is able to see the silver lining on this very dark cloud.  There is a pretty large dose of perspective.

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

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

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

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

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

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

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

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

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vs.

Last night, Chet and I were getting Gabriel down for bed.  And, we had quite the laugh.  The conversation went something like this….

Chet:  “So, you don’t like the underwear with pictures on them anymore?”

Gabriel:  “No, they don’t make me feel like a man.”

Chet and I break into hysterical laughter.

Chet:  “Did he really just say that?”

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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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First, please allow me to apologize for the far too long delay in providing an update.  I received not one, not two but three rebukes today and was scolded for not providing an update more forthwith.  I mean, it’s not like I’m trying to hold down a full time job, help take care of children, and just keep my head together.  So, without further delay…I am here to provide the much anticipated update.

The problem with waiting so long to update on my end too is that I loose track of what’s happened, where I left off and what I have already told everyone about.  So, please forgive me if I repeat things … in my effort to provide an expedited update (and because quite frankly I’m feeling a bit lazy) I’m not going to go back to refresh my memory.

I think I left off at Chet, Gabe and my trip to the Bay area for the first round of radiation treatment for Gabriel.  That first week was hard, emotionally and physically.  But, I was so grateful that I was able to be down there with my boys.  Friday afternoon we headed back home in the midst of one of the major winter storms out here.  Unfortunately, our return trip home took over 8 hours, more than twice as long as the trip typically takes.  But, we made it home safe and sound.

Chet got some good pictures of Gabriel on their hike while we were down the week before that I wanted to share.

The weekend was relatively normal, by all accounts.  Gabriel and Rebeka spent a bunch of time out playing in the snow.  It was a nice and because my silly phone had crapped out on me in San Francisco, I didn’t take any pictures.  Yah, I also don’t know where I put our other camera.

Chet and Gabriel headed back to the Bay Area on Monday for another five days of radiation treatment.  Radiation is incredible as it just takes a few short minutes for the actual treatment.  So, during their free time Chet and Gabriel headed out and did a lot of hiking, sightseeing, and just general being out and about.

One day they headed over to the Marin Headlands and looked at the old military sights.

The other days they headed out to the beaches and went out on some wonderful hikes and spent a lot of time exploring the beaches, as well as seashell collecting.

Chet and Gabriel made it home safe and sound – Gabriel with his life and Chet barely with his sanity.  Spending 24 hours a day for five days in a row with Gabriel can be a bit trying at times, particularly when he pulls out the drama and manipulation cards.  But, they made it, and we’re totally done with radiation treatment for the entire duration of Gabriel’s treatment for leukemia.

Life is beginning to feel more normal.  We are truly starting to settle into the routine of all that we’re dealing with.  The daily medications and broviac flushes are part just a part of our daily life.  Twice weekly blood draws and weekly dressing changes are the routine.  It doesn’t feel as foreign, and I suppose that’s a good thing.

The best thing that has happened over the past couple weeks is seeing our Gabriel come back.  His face is still fuller than it was when he was first diagnosed, but the kid is definitely back to being Gabriel.  We are so grateful for that.

The effects of the radiation continue though.  Gabriel definitely has experienced much more nausea as a result of the radiation than any other component of his treatment thus far.  And his appetite is all whacked.  I mean, the kid ate like a bird before this, but now that he has been off the prednisone and such, I’d be surprised if he eats 800 calories a day.  It kind of sucks because Chet and I are at a loss as to what to do to make him eat.  We’ll cook him what he says sounds good, and then he might eat 4 bites and he no longer can eat any more.  We’ve tried smoothies, yogurt, everything, but alas, we’re just having to encourage him to eat what he can and go from there.  Our one saving grace has been that he’s been drinking a ton of milk again.  So, that is a good thing.

Everyone is home for this entire week.  Yesterday, Gabriel’s teacher, Mrs. Protain, started coming to do school work with him.  The School District finally got everything approved and we’re back on the education track.

And, tonight we hit another major milestone – full buzz cut.  The radiation dealt the death blow to Gabriel’s hair.  But, I’ve been long winded enough…and I might as well save something to follow up in the next day or two.  So, I’ll just leave that as a teaser…pictures and more to come.


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