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Archive for June, 2011

Today marks six months to the day since Gabriel was diagnosed with t-cell acute lymphoblastic leukemia.  I wish I could say the past six months have been smooth.  I wish I could say the past six months have been easy.  But, I would be lying if I did.

The past six months have SUCKED.

Leukemia sucks.  Cancer sucks.  It’s a horrible disease that takes so much from the person suffering from the disease as well as all those who love and cherish the individual afflicted.

Compounding, at times exponentially, the toll of our journey as a family with Gabriel’s cancer, Chet and I have been faced with many other burdens, challenges and heart wrenching circumstances beyond Gabe’s cancer.  The past six months would have been difficult enough emotionally with the other things that have occurred in our lives – major health issues with close family, the death of a dearest family member, deaths of family of close friends, and more – yet, all this has been piled on the stresses of coping with a child who is fighting the battle of his life, for his life.

I’ve had many friends share this quote from Mother Teresa:

I know GOD will not give me anything I can’t handle.  I just wish HE didn’t trust me so much.

Last night, Gabriel was downstairs cleaning his bedroom.  Chet looked down the stairs to see Gabe sitting on the floor of his room crying.  We went downstairs to understand what was going on, and he was looking through a book of pictures of his first grade class, crying because he misses his friends.  He misses friendship, companionship, socialization, things 6 year old children should be able to experience.  Things kids his age should be experiencing, but he hasn’t because of the cancer.  He has missed out on those precious moments because of the horrible awful despicable cancer.  It took every thread of my being not to sit there and sob with him.

We had to make a decision at the end of the school year: were we going to advance Gabriel to second grade, or were we going to hold him back in first grade?  Gabriel was doing great in math, science, etc., but his reading is way behind.  Ultimately, we chose to hold him since he has been by far the youngest in his grade (he made the cutoff for kindergarten by four days), he is by far the smallest kid, and what was the point of pushing him forward.  It seems like it should have been a no-brainer, but it was a difficult choice for Chet and I.  We knew that Gabriel would watch his friends, those same friends who he misses, advance without him.  We knew he’s good to go in every other subject than reading/language.  But, we also knew that we had to do what was best for him, not what seemed like a “feel good” choice at the moment.

As my grandmother so appropriately phrased it for us, “he’s not repeating first grade, he’s finishing first grade.”  And that’s so true.  Because of his treatment he missed half the school year.

But, despite the decision being correct or right – the fact that we had to make that decision when Gabe’s missed out on so much with those friends hurts. My heart hurts.

However, despite all the tears that have been shed, despite all the sadness and difficult days, we are so blessed.  We are truly blessed beyond measure.

Six months ago – at the time this picture was taken, just a mere three days before I received the fateful phone call, Gabriel likely had leukemia raging throughout his body, but we had no idea.  He was happy, adorable, and just a regular 6 year old.

And, today, Gabriel still is a happy adorable and regular 6 year old thankfully to the keen observations of Dr. Christopherson and the swift response by all involved, particularly the Oncology doctors at Children’s Hospital Oakland.  The mere fact that today, a child whose body was being consumed by cancer is still with us is a beautiful and wonderful blessing.

We are blessed that Gabriel has responded incredibly well to treatment.  We have received so many enthusiastic responses from all of the doctors who have been involved in his care and treatment regarding his response to the treatment he has received.   We are blessed that we have a child who has tolerated the medicines, the poisons, the pokes, the tests, the doctors visits, and the isolation so well.

We have been blessed with a community of family and friends who have offered so much support, love, prayer and help when we’ve called for it.

We’re blessed that aside from one infection, our only hospital admissions have been routine and scheduled.

We’re blessed, because we have seen Gabriel grow into a little person wise beyond his years with a heart of love and appreciation for the silver linings offered by the disease, even when he’s otherwise upset about the less appealing aspects.

Chet and I have been blessed with one another.  When I’m weak, he is strong for the two of us.  When he struggles, I have the strength to offer to him in return.  We are blessed that despite some of the most stressful circumstances one can find themselves experiencing, we are more unified in our marriage than I believe we were before.

Laura Story, a singer and songwriter wrote a song “Blessings.”  The lyrics are spot on in so many different ways.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

(Chorus)
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

I recently found out my aunt passed away over the weekend.  She lost her fight against cancer.  Cancer sucks.

I loved my Aunt Mary.  I have countless fond memories of my time with her.  Love filled, laughter filled moments.  Moments that I will carry continually in my heart.  My Aunt Mary showed me different ways to look at things.  She planted a seed for my love of cast iron cookware, my interest in cake decorating.  Through her and my Uncle Emo, I was introduced to the idea that regular people can have farm animals, can provide for themselves off the land, can be independent spirits.  Yet, for reasons I don’t know and probably wouldn’t ever be able to understand, she isolated herself from the family during her battle.  While I accept the decisions and choices she made, those same choices and decisions have left me baffled.  And loosing her to cancer just scraped at the slowly healing wounds of my heart relating to Gabriel.

Godspeed Aunt Mary.  I love you and will carry in my heart your smile, your laughter, and the beauty of your heart.

Next week Gabriel enters the second to last phase of his treatment – delayed intensification.  The next eight weeks will be difficult in our household as we again go into complete lockdown mode.  Gabe’s counts will be extremely low for the bulk of the summer. Chet and I are beginning to mentally, emotionally, and logistically prepare for this last phase. We’re ready.  We’re ready to get to maintenance so that Gabriel will finally achieve normalcy in his life. Until then, we are equipped for this next “battle.”

Please, continue to pray for us, Gabriel and my family.  We’ve experienced a lot already in 2011, and the year’s yet through.

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Western States 100 mile endurance race is this weekend and Chet will be running it for the second consecutive year.  It is also the second consecutive year that they have had a snow course (I’m going to save my opinions about the snow course for face to face discussions). But snow courses aside, Chet’s going to run it again.  Honestly, if he hadn’t gotten the Silver State Striders lottery spot and he wasn’t running this year for Gabe, he’s probably not run States this year.  The course changes just don’t suit his personality.

But, he is running and he’s running for Gabriel.  If you’re interested in sponsoring Chet’s run, we have a runner sponsorship program in place.  You can sponsor Chet (or any other runner/cyclist/athlete) that you know for an event.  We’ve set it up as a per/mile sponsorship, for example a friend of ours is being sponsored by his sister-in-law at 50-cents per/mile he runs at events.  If you’d like, you can obtain the form by clicking this link: Sponsorship Form.

Chet’s running three 100-mile races this year: Western States 100 (this weekend), the Tahoe Rim Trail 100 (July 16-17) and the Bear 100 (September 22-23).  This year each mile he runs, each step he takes has a different significance than in years past.

Stay tuned!  I’ll post a couple updates from the event this weekend.  Unfortunately, due to the course changes, I won’t be able to meet Chet until Mile 55.  Assuming that all goes as planned, I’ll see Chet at Mile 55, Mile 60, Mile 80 and the finish.  Stay tuned!

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It has taken some time, but we FINALLY have the garden in.  This year we got it up to about 1/4 acre.  with a lot of effort, the trenches were dug, fences raised, irrigation put in and many many plants and seeds planted.

This spring was not very conducive to getting plants in the ground and going.  And, well, we’ve been a bit behind the 8-ball this year – again.  But, despite all the excuses and justifiable delays, we got it in and things are actually doing amazing well.

We have two full rows of tomatoes, a total of 28 tomato plants, a row of chard, beets, carrots and kale, a row of turnips, parsnips and rutabagas.  A row of onions.  A row of potatoes.  A row of winter squash.  A row of eggplant, cucumber, and cauliflower. A row of tomatillos.  A row of peppers.  A row of beans, strawberries, dill and cilantro.  A row of beans and carrots.  A row of pumpkin, winter squash and summer squash.

We still have melon and gourds to get into the ground, which should happen this week.  The biggest challenge was getting the row covers up in time.  Just over a lunch break today, the birds got their sneaky beaks onto several of our freshly sprouted beans.  Last year, our biggest nemises was birds and ants.  This year, it still appears to be quail and ants.  Row covers and bird netting will take care of the birds.  Ants…well, today they got cornmeal to hopefully start taking care of the problem.  We’ll get the buggers under control eventually.

We also planted four artichoke in spare tires.  Finally found some places that they can be planted without having to be moved in future years.

We still have about 6 fruit trees and several berry bushes that need to be planted.  Hopefully this week.  But, we’re making steps.  Now, I pray the garden produces.  I can’t wait for harvest and canning season.

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FORE!

As you know, at the beginning of May, we were blessed with a fundraiser put on by some good friends, the Troska’s.  It was a great day, and what was awesome was the fact that Gabriel was able to attend.

Gabriel got to see one of his pre-school friends, Anika, and it was awesome.  He was so thrilled to see her.

It was amazing, so many of you, our friends and family showed up in support of Gabriel.  I can’t express still how grateful Chet and I are are for the support.  Not only was the physical presence of each of you a gift, but the financial support was incredible and exceeded anything we could have imagined.

It was just awesome that Gabriel was able to hang out with his boyscout buddies for a little bit.

Rebeka even had a blast!

Thank you again to everyone who came out for the event.  We cannot express in words how thankful we are to each of you.  And, a tremendous thank you to Eric and Melanie for putting together an amazing event and for giving of themselves.

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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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