CANCER SUCKS

First, let me start this out with “Gabriel’s doing awesome.”  We have truly been so blessed with his health and progress.

We are two weeks away from him getting his central line/Broviac out.  This my friends is worthy of five exclamation points!!!!!  For those of you who have not experienced a Broviac line, this is a huge step forward in his treatment.  For us it means a lot.  First, no more weekly blood draws.  Second, no more weekly dressing changes.  Third, no more daily flushes.  Fourth, no more almost guaranteed hospitalizations if he gets a fever, even if for some reason his counts are low, because the fear of a blood infection isn’t there due to the absence of the central line.

Yes, there are some downsides.  We won’t be doing weekly blood draws, we’ll do monthly, which means we’re going to be in the dark about where his counts are at – and we’ve gotten pretty accustomed to knowing that information.  And, Gabe’s going to be getting pokes, real pokes, for every Chemo treatment and every blood draw.

However, the upsides are just too much, besides all the stuff just related to the maintenance of the line, Gabriel will be able to go swimming, take baths, get in our hot tub, and do all sorts of things like that, things he hasn’t been able to do for the past year and half.  It’s amazing how little things can mean so much.

Outside of that, there hasn’t been a whole lot of news to report.  We’ve been hunkered down for the past few weeks.  Gabe’s been having fun doing his Cub Scouts activities.  Chet’s a running fool.  And, slowly, ever so slowly life is beginning to feel a bit more normal and there are moments where you almost forget that you’re still living with cancer.

If you haven’t seen this video yet, it’s awesome.  It makes me just cry, tears of understanding, compassion, pain, joy, empathy, sorrow, all in a single moment.  But, again, it is just awesome.

You know, cancer makes you stronger.  Whether you’re the one actually dealing with the physical disease, or whether you’re the loved one sharing the journey.

Today, Chet and I found out a dear friend has just been diagnosed with cancer.  It’s a cousin to leukemia, and man it just hurts deep in the gut.  The pain is just too deep to describe and there’s no way to express the emotions associated with knowing another person you know and love has to deal with such a crazy disease.

We shared with Gabriel our friend’s diagnosis.  Man, the kid is absolutely astonishing, empathetic, and incredible.  He started crying.  Today he got a stress relief squeezer thing.  Gabe was so frustrated that through gritted teeth he asks me for the squeezer.  I dig it out of his bag and hand it to him.  He starts squeezing it as hard and he can, and then throws it across the room in anger.

He is such an amazing person.  I hope he never looses that empathy, compassion and just real nature.  It makes him into an absolutely awesome soul to be around.

We’re all stronger from this experience.  Our most fervent prayers go out to our friend and we ask that you pray for his health and prognosis too.

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Moments of Humility

We made it.  The clock is started and the first dose of Nelarabine is done.

Gabriel and I made it to Children’s Hospital Oakland this afternoon around 4:30, and I don’t know why I’m always so surprised by how humbling it is to be here.  Within less than two hours of being back in the hospital I’m given example after example of how fortunate we have been and are throughout this entire process.  There is something about being reminded that we have been blessed beyond measure and no matter how rough our journey has been at times, our experience is really been easy compared to many many families.  Yet, thinking about how truly difficult this has been at times, I can’t even imagine how much more difficult some have it.

I don’t know why we’ve been so blessed.  The entirety of our experience has often forced me to reflect on some of the most difficult questions of my faith.  Why does God permit bad things to happen to kids?  Why do some kids suffer?  How can a loving God allow such adversity, difficulty and pain?

Truth is, I haven’t been able to answer my own questions.  I don’t know why.  But, I do know that for us, this experience has given us so much perspective.  I’ve become more compassionate to other people’s circumstances.  And I know that through the difficult days, we’ve been given opportunities to grow, each as individuals and together as a family.  And as backwards as it sounds, I truly believe that through LOVE, we’re forced to experience hardship because we grow and have experiences we wouldn’t ever otherwise have. By knowing and experiencing the hardship, we’ve learned LOVE. Not the emotion of love, but the action; LOVE as a verb.

It doesn’t make sense.  And, my heart hurts so much for some of the families here. And, as cliche as it is, “no pain, no gain.”  We have truly gained so much through all of the pain we have had.  I can’t say that is the same for every child and their family.  But, for us we have been so blessed by cancer.

Don’t get me wrong, if I could un-ring this bell, I think I would.  I HATE so much about it.  But, I can’t change the truth of our reality, and with the harsh elements of the truth, have been incredible experiences that I wouldn’t trade for anything.

Tonight start the official countdown to maintenance.  I am so grateful to be here.  Not only at this point in Gabe’s treatment, but here at the hospital.  We are surrounded by amazing nurses, doctors, and people here.  It feels oddly “comfortable” to show up.  All that we have standing between us and maintenance is 4 more doses of Nelarabine, a dose of Cytoxin, 8 doses of ARaC, two more spinal taps/lumbar punctures, one dose of Vincristin, one round of Peg-in-the-leg, and the wait for Gabe’s counts to come back up.  That’s it, and it’s so encouraging.

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A Whole Lot Of Catch-Up [Part 1]

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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Six Months Later.

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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Interim Maintenance And More

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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We’re Here…

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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Dresses!

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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Home Again.

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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R.F.M.

Years ago, a good friend of ours, Jim from New Zealand, used a term when encouraging Chet about running his first 100 miler – R.F.M – which stands for “relentless forward motion.”  Jim was instilling in Chet the mentality that to achieve your goal, to cross the finish line, you had to just continue to put one foot in front of the other. You must continue with relentless forward motion.  It doesn’t have to be fast, it doesn’t have to be steady, it just has to be relentless.  No matter what, you’ll take that next step closer to your goal, the finish line.

It occurred to me this evening that those same words, that same concept is applicable in so many aspects of life.  And for Chet, Gabe and I, we just have to keep it in mind – R.F.M.  Eventually we’ll get there.

This is the race of our lives, it is the battle of our lives.  And, we haven’t won the war until Gabriel is all better.

However, the last couple days I was down, really down.  I was angry at myself that some how we had let something through the defenses.  I was sad watching Gabriel be clearly miserable while dealing with whatever it is attacking his body.  I was worried about whether or not what he was going through was normal.  I was scared about what the bigger implications of fever might mean.  I was anxious about the potential financial burden another air ambulance ride to Oakland might mean.  All of this was truly just breaking me, plucking away at the last threads of strength I felt as though I had left in my soul.

Then, this morning it just felt worse.  We received some concerning news regarding Gabriel’s blood counts from this morning.  What we were being told was mind boggling and beyond comprehension.  We were being told that Gabriel’s platelet counts looked to have plummeted overnight – to the tune of 200,000.  We had no information on his ANC, which we had been told was 88 the day before (keep in mind a “normal ANC is around 2500 to 3000).  His fever had spiked again the night before.  He had been vomiting the day before.  And well, his body was just being beat up.  So all of this just felt extraordinarily overwhelming.

However, even though it felt like there was so much not going the direction we needed it to be, there is always a glimmer of hope through faith.  Although, honestly, I was having a very difficult time seeing that glimmer.  That hope came in the form of one of the treating oncologists from Oakland Children’s Hospital who was in Reno for the Reno clinic,  Dr. Torkildson.  The first round of encouragement was when he was shocked to find out that this was Gabriel’s first fever since his diagnosis in December.  According to the doc, it’s extremely common for children with leukemia to deal with fevers and even more so for kids with t-cell leukemia.  He answered all of Chet’s questions and gave us both the comfort that Gabriel was being given the best possible care here in Reno as he would have received in Oakland.  Yes, we’ve become pretty partial to the Oakland folks.

The next round of encouragement came through Gabe’s temps throughout today.  All day he was hanging in the mid-99 range without any medication to treat the fever.  More encouragement came in the form of final blood test results from today.  The early numbers were just bad, as the blood sample had coagulated on its way to the lab.  So, the second blood draw and testing showed that Gabriel’s ANC counts have come up to 300 even though is platelets have come down a very small amount.  And finally, capping off a trickle of good information was the fact that this evening when Gabe’s temps usually spike to above 101 and into the 102 range, his highest temp today was 100.2 without medication.

Relentless Forward Motion.

Truly, there are days where this journey feels like an extraordinary challenge.  There are moments where I doubt my own ability to hold it together.  Yet, just when I’m pushed so close to what feels to be my breaking point, the pressure is relieved and I’m able to take a deep breath again.

I don’t know what the purpose of this is, but I’m content to never know how much more I can handle.  Sadly, I don’t believe for a second that I’m not going to be challenged again.  Yet, this experience is strengthening me to be prepared to handle the battles that are yet to come in order to win this war.

Right now, Gabriel’s still got a lot of road to cover before he can be discharged from the hospital.  We’re not in the clear as of yet.  But, we’re a couple steps closer to that outcome. Prayers work, positive thoughts and encouragement is so appreciated by Chet and I.  And, for Gabe, well, I know he just is ready to get out of the hospital and start feeling better.  Right now, he just doesn’t feel good and honestly looks utterly miserable.

Thank you for all the love and support.  You, our friends, are appreciated and cherished continually!

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So, Apparently It Was Bound To Happen

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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