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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That Giant Sucking Sound . . .

You hear was the wind being suck out of our sails this week.  Gabe was scheduled to start maintenance Friday, yesterday.

No, he didn’t start maintenance yet.

Wednesday we spoke with Connie, the nurse practitioner who we deal with a lot at Children’s Hospital Oakland, and his counts had barely come up since Thursday last week. Gabe’s ANC has to be at least 750 in order for him to start maintenance.  As of Tuesday, he was a little over 300.  He was just very slowing coming up, and that meant there was no way we’d make it to maintenance as scheduled.

I was crushed.  I am so ready to make it to maintenance. It’s like this line in the sand that once we make it to there, we can begin to have a normal life. We will no longer be hostages.  Gabe will ultimately be able to go back to school.  We can go to stores as a family.  We can go to movies, eat out at restaurants – have a normal life.

Chet and I had started making plans for this weekend.  We were planning a nice weekend as a family, camping, going out for at least one or two celebratory meals. We were going to be like a NORMAL family.  Chet and I got our hopes up, even though we knew were shouldn’t.  We couldn’t help ourselves.

So, when Connie’s call came in, it sucked. My heart just felt so let down.  Not by anyone in particular, not by anything.  I was just so incredibly disappointed.

What’s silly is that it’s not like we are put off that long. We’re probably going to make it next week, but we’ll have to see.  What’s a week?  What’s two weeks?  Really, in the grand scheme of things, it’s nothing.  But, when you’re so tired of life being a constant unknown.  When every day presents a new uncertainty, the concept of maintenance is so alluring.  You just yearn to be there.

Admittedly, a lot of the “romance” of maintenance at this point is unrealistic for us.  We know that the first several months will be filled with a lot of tweaking to get the daily and weekly medications right so that Gabe’s counts stay stable.  We know that there’s going to be a lot of adjustment.  But, we’ll be in the coveted phase “MAINTENANCE.” That in itself will be huge.

So, tonight, we were supposed to be camping, Gabe, Rebeka, Chet and I.  We were supposed to have had fresh seafood.  We were supposed to have gone hiking.  We were supposed to have been celebrating.

Instead, we’re chilling as a family enjoying the bounty of our garden.  We’re harvesting, canning, and preserving. We’re following our advice “keep on keeping on.”

We’ll know next week where Gabe’s at and whether we’ll be able to start maintenance next week.

Most importantly, we know that God wants us right where we are at.  We’re content with that.  When it is time for Gabriel to make it to maintenance he will.  All along this journey, Gabe’s cancer treatment has been in His hands.  And so far, He’s been doing a pretty amazing job, so who are we to question where we are at.

On a side note – I mentioned today we’ve been harvesting.  This was one of our purple cauliflower’s that we grew.

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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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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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A Continuation…

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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A Taste Of Consolidation

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

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

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

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

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

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

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

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

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

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

Life is a lot like this…

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

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

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

And one of my most favorite artists, JJ Heller.

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

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

Life is always an adventure here in the Fairbank household.

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Adjustments

Sorry about the long silence.  This weekend was a bit long and filled with emotions.

Gabriel tolerated his last chemotherapy treatment extremely well.  We are so fortunate to have him do so well and not suffer the nausea and other ill effects of the drugs.

Gabriel was also loosing a lot of hair.  It was all over his head, not really in clumps just yet, but it getting in his eyes and mouth and all over everything, so we finally convinced him to clip his hair very short.

Man, that was difficult, really difficult.  The short hair combined with the round face from the prednisone just really hit me hard.  Gabriel just now really looks sick, and that just hurts my heart.

Gabe’s appearance even hit him hard this weekend.  He came downstairs later that day and was upset saying that he didn’t look like himself.  He’s right, he doesn’t look like himself.  We both had a good cry.  Gabe cried because he just is struggling with how he looks and feels.  I cried because I can’t change what he’s dealing with, I can’t take the pain away, I can’t do a whole heck of a lot.  Rebeka joined us crying because we were crying, until she head butted me in the nose and I pushed her off the chair (I know, I’m a bad mommy who had the knee jerk reaction) and then she was crying because she got pushed off the chair.  In the end, the three of us just had a good cry.

Sunday was a lovely day.  Gabriel and I pretty much just laid around watching moves all day.  Gabriel has had a craving for junk food – potato chips, popcorn, etc.  I lost track of how many bags of popcorn I popped on Sunday.  It was just nice to hang out with him.  I could use many many more days like that – well, sans the copious amounts of snack foods.

Sunday Rebeka cracked me up.  She wanted to wear a dress and was just completely cute.

She was also very proud of herself for climbing up and being a dare devil on the ottoman, despite my admonishments and warnings.  But, really, she’s so stinking cute, what can a mother do but set reasonable limitations.

And, go with the flow.

The other difficulties with this weekend were the reality of the limitations on the things Gabriel loves to do.  It was an awesome weekend, beautiful.  Gabriel and Chet were hanging out in the yard and Gabriel suggested that he and his dad start working on getting the garden ready for spring.  Man, it sucks to have to say “no” to the kid, but we just can’t risk it right now with his immune system being so low.  It totally sucks, who would have imagined a month ago that we would have to tell Gabriel “no” to digging in the yard.

Freak an A.

So, tomorrow Gabriel and Chet head to Oakland for Gabe’s last bone marrow aspiration.  It’s hard for me not to be going down there with them.  I hate that.  My type-A personality hates it.  But, this trip they have to go on their own. It will be a fun time for them to spend together, Dad and Gabriel.

Next week there is an appointment with the Radiation Oncologist and we should be starting Gabriel’s next round of treatment – consolidation.  We don’t know what is in store yet for us with that.  We are hoping to know as soon as possible what treatment plan he’ll be assigned to.  Again, it’s the unknown that is killing me.  Man, definitely NOT the disease to have a control freak type-A personality with as a parent.  But, I’ll be going down with them next week, and that’s a good thing.  I’ll be grilling the oncologist.  Poor doctor will probably be feeling like he’s being deposed, but that’s what they get when they get my kid as a patient.  I will grill them, ask questions until I’m satisfied that the treatment plan they have for him is the best and least invasive manner in which to achieve our goal of a cure.

Despite the difficult emotions we have all been dealing with these past several days, Gabriel is doing well.  He’s doing really well.  His Broviac port has healed well and he just is stinking cute.

I just need to keep looking at the bright sides of things and realize that in the grand scheme of things, this is only a short journey.  God has a plan for us, shortcuts won’t get us to our ultimate destination any faster, as there is a purpose for the experiences, trials and struggles we are dealing with.  There is truly a purpose and plan, a grand and glorious plan.

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There’s No Place Like Home…

Where the cyclone roams.

We made it home.  Ironically, it’s weirdly bittersweet to be home.  Granted, I’m absolutely thrilled to be home, but also being home is so OVERWHELMING!

So, here’s my effort to bring everyone up to speed.

Friday we finally got discharged from the hospital around 12:30 pm.  We had rounds that morning and we got the report from the bone marrow draw the day before and …

Well, do you want to know …

really?

Well, the results were …

REMISSION!!!!!!

Yes, that was intentional use of not one, but SIX exclamation points!  We made it to remission in two chemotherapy treatments.  This is truly answered prayers, thank you for all the prayers and positive thoughts!  Gabriel went from effectively 100% leukemia cells in his bone marrow on the day we arrived to zero last week!

Gabriel was underwhelmed, but it definitely was a great note to leave the hospital on.  Further, we got news based on his blood draw that Friday that his platelet counts were rebounding on their own.  Such great news in really a short period of time.

We had a great drive home, stopped and picked up a big o’l box of supplies and made it home to witness the best thing ever – a HUGE hug between Rebeka and Gabriel.  Gabriel was simply focused on just going up to his sister and giving her a giant long hug.  Of course, I totally missed this photo opportunity.  But, you can just imagine the two of them holding one another, it was the most beautiful thing ever.

So, Gabriel spent the next hour or so just walking around the house, like it was the first time he’d ever seen it.  You could tell it just didn’t feel quite like home.

We had dinner with my parents – a special request by Gabriel.

Saturday, Katie, Becky and Chet’s brother-in-law, Shannon, made it to our house after picking Shannon up at SFO that morning.  It sure has been nice having family around.

We celebrated Christmas on Sunday, which was completely awesome.  The only possible thing that could have made it better is if Chet’s dad, Chip, had been here too.

It was an awesome Christmas full of our typical traditions – fresh cinnamon rolls for breakfast, mimosa’s, gift opening, sensory overloads, and more garbage than you can possibly shake a stick at.

Rebeka LOVED her Kitchen.

She was pushing her way into her kitchen and Lord help anyone or any package that got in her way.

Gabriel got his lasso, and makes a mighty fine cowboy, if I do say so myself.

P.S. Do you see that in the background there?  Look closely?  It’s black, automatic, and it’s not Chet.  Got it?  It’s a NEW DISHWASHER.  Yippee, we decided we needed to get a new dishwasher stat to have the ability to sanitize stuff really well with Gabriel.  The full kitchen remodel will have to wait until Gabriel has made it to maintenance with his chemotherapy treatment, but beside the new floor (which looks good, doesn’t it) he got the cabinet framed and dishwasher installed.  Sweet.

For Christmas dinner, I broke out the fine china as you can see.

Yes, the very exclusive and difficult to acquire rare china – Dixie.

After much food, family, and play, we were exhausted.  It was a wonderful Christmas, even if it was nearly three weeks late.

Gabriel has been doing well.  Poor guy is really suffering from the side effects of the Prednisone.  Fortunately, we’re on the countdown for that medication.  But, it’s really difficult because it’s starting to bother him, and my heart breaks for him.

He’s also starting to lose more hair, and that’s really hard.  He’s in denial about it, which is understandable for a little boy who absolutely loves his hair.  But, as a mom, it’s so difficult.  You want to be able to insulate him from the hard parts of all this, but it’s absolutely impossible.  And that just crushes me.

Today was a really rough day for me emotionally.  I think the past several weeks of positive enthusiastic attitude hit the wall.  I’m just feeling crushed in many ways about the overwhelming responsibility of all this.  At the hospital, it was a controlled environment.  There nurses and doctors were there to help us out.  There was a lot of peace and quiet in a weird hospital sort of peace and quite.  There was a certain calmness to being there.

While being home is wonderful, it’s so overwhelming.  There’s so many other things to be thinking about that we have to attend to.  There are now two kids trying to be the center of our attention.  All the realities of the responsibilities are right here in our faces.  Honestly, there have been many moments today where I would have preferred to find a dark closet to just go hide and cry.

But, this will pass.  The routine will become routine.  And all these feelings will be a memory.  We are so blessed to be surrounded by a loving supportive family and circle of friends near and far.  We are so blessed to have a kid who was diagnosed at a point where he could respond well to the treatment and has responded remarkably well.  We are blessed to have seen the results we have seen in really a short period of time.  We are blessed in ways beyond measure.

And, I think that is part of why this is difficult – things have gone so smoothly in so many ways, that it’s just hard to deal with the emotional toll and reality of it all when I can’t just ignore it.  I respond well to the crisis, but I don’t deal well with the let down.

We’re home, the new way of life is here and we’re beginning to establish a routine.  The emotional roller coaster isn’t about to end, but we’ll have some times of calm here soon.

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The Highs And The Lows

Yesterday was a lot of fun.  Gabriel and I just had a good time hanging out in the morning and then hanging out with Aunt Katie and Grandma Becky.  Grandma Becky is getting pretty good at playing the PS2 Lego Star Wars game.  And, Gabriel isn’t yelling instructions nearly as much.  Haha.

Gabriel has been having fun taking pictures of his Auntie.

Say “AAHHHHHHHHH.”

Later yesterday afternoon our friends Dave, Jen, Julia and Sam came by to see Gabriel on their way to Disneyland.  Gabriel was so excited to have two of his friends come and spend some time.

Like us, Dave and Jen don’t have a game station at home, so it was amusing to see Sam just sucked into the video game vortex.

But, we were able to tear Sam away from the game long enough to do some art. Gabriel and Julia had a great time making quilt squares.

Even Sam was there, though he was quite camera shy when he knew it was out in the Play Room.

But Gabriel and Julia had fun and didn’t mind posing for a picture with Jen.

After the artwork was done, it was back to video games for Sam and Gabriel.

It was a very nice day yesterday.

Today was a roller coaster of a day for both Gabriel and I.  While for the most part, it was a standard day, it also wasn’t.

Since Gabriel has to be completely put out for the bone marrow draws he can’t eat or drink after midnight.  Today, his procedure wasn’t scheduled until 12:20 pm.  That made for a pretty rough morning for a kid pumped full of Prednisone who was extremely hungry all morning long.   We tried sleeping in late, and that worked until about 8 am, but then he was awake and hungry.  I made a pact with him, I didn’t eat until he got to eat, and I was hungry and I’m not suffering from an artificially increase appetite due to medication.

Then at the out patient surgery it took forever to get him in for the procedure.  He managed to catch a nap while we waited, but it was hard.  Ironically though, he really started to get into better spirits there and was kidding around with me, which was just wonderful (and thanks some meds they gave him to ease the nausea he was having from the extreme hunger).

Once he was in for the procedure, things went pretty smoothly.  We’ll hear tomorrow morning where we’re at at this stage of the treatment.

This evening Gabriel had some good time hanging out with Aunt Katie and Grandma Becky while I made an escape with the intention of taking a shower at the hotel, but I made a stop to Title 9 first and one thing lead to another and after being gone for about an hour, I was feeling guilty and headed back to the hospital, because dang it, I just enjoy hanging out with my kid right now.  These are absolutely precious moments that I am cherishing.

After Grandma and Katie had left, Gabriel was spending a lot of time playing with his hair.  And, well, Chemo is starting to take its toll and the difficult discussion about hair loss began.  It’s hard because Gabriel LOVES his hair and it was rough on him, but he actually handled it better than I expected.  But, it’s still really rough. That was a major low point of today.

The good news is that we are getting to go home tomorrow.  I have a giant bag of medication to take home, we’ll be getting a big ‘ol package of blood collection supplies delivered to the house tomorrow, and well, we’re going to be home.  I’m thrilled.  God willing we won’t have many extended stays here at the hospital again.

So, for the last night from “5 South” I will say Good Night and I’ll update once we get home and settled in.

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