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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It’s been far too long, and I’m breaking the silence.

Where do I start? It’s been way too long, and I’ve meant to come and update so many times, but my heart hasn’t been able to put my focus to actually sitting down and writing an update.

I think I really last gave an update as we entered maintenance. And with that, I had high hopes of a smooth road of bliss and a normal life. Well, that’s been partly happening. But, there has been so much more occurring in our lives, not just cancer, and a lot of it resulted in a lot of stress and not so positive happy feelings in me. And, because of that, I just didn’t have the heart to write it out.

One thing I’ve learned over this past year is that it is one thing to write about the stress associated with watching your child go through a diagnosis of cancer and the resulting treatment. For me, writing and sharing about that was comforting and healing. I was able to face the emotions, fears, anxiety and other feelings and basically talk myself through them while sharing our journey.

Unfortunately, I’m not as comfortable sharing about the other stress inducing experiences in our life, and 2011 was packed full of them. As in the words of the old Morton Salt advertisements, “When it Rains it Pours.” And, that has been the last year for all of us.

Right about the time Gabe started maintenance, other factors outside of cancer resulted in a very dramatic increase in my stress level. I was just plain frazzled. And, unfortunately, these stresses continued for several months. And new things were thrown into the mix, including getting laid off from my job at the end of the year.

Whew, what a year – right? Started with a bang and ended with one.

Fortunately, the people I worked for were amazingly gracious to me and truly the economy just finally hit and like millions of other people in this country, I became one of the statistics.

Really, how do you talk about that? For me, I couldn’t, not particularly when I was in the depths of the emotions and everything else. And because of all the stress associated with that, along with other things happening in our lives, I just didn’t have it in me to keep my chin up and look at the bright side.

I was fighting depression and felt for many months that I didn’t have a whole lot else in me to keep on the good fight. I was beyond exhausted, beyond frustrated, beyond exasperated. As I said to a close friend, I was at the end of my rope desperately clinging to the knot at the end praying that I didn’t loose what little grip I had left.

But, in life, all things pass. I started to feel better and get over the despondent emotions and began to pull up my big girl panties and move on. And, just as deep in my heart I knew, as soon as I was ready to emotionally move on, things would develop. When one door closes, God, in his own time, opens another – and at the end of February I started a new job as a Deputy Attorney General for the State of Nevada.

So, when you’re down, feeling awful there really isn’t a lot inspiring to even frank to talk about.  That’s just not the kind of person I am.  I try not to whine too much about life.

I’m sorry I haven’t been updating, but there’s a little bit why.

Okay, that’s more than enough about me. Let’s talk about the stuff that this blog is really all about – our family!

Gabriel is doing great! We had the hospital admission over Halloween, which sucked. Really sucked. Poor kid came off of a 5 day admission for Nelarabine in Oakland only to come down with a fever. Much to our surprise, his ANC was crazy low and stayed crazy low for the entire time we were in the hospital – 11 days. And, all that was due to a sinus infection. Yes, a simple run of the mill sinus infection.

But, those days in the hospital, I sewed his Halloween costume and while he missed trick or treating this year and all the fun festivities, he did get an awesome costume.

And even after 11 days in the hospital, we got sent home with quite a nifty set up for continuing to give Gabriel some heavy duty antibiotics.

But, slowly his body recovered and he was able to go back to school.

Yes, finally, we are starting to be more NORMAL! Yes, there is a normal life during cancer treatment! It just takes a very long time and also requires a bit of redefining of “normal” for our family.

Gabe’s been participating in Cub Scouts and has almost completed all the requirements for his Wolf badge. He’s going to school, having fun with friends and even got to go on a field trip a while back. WOW!

But, in treatment, there’s still adventures; ups, downs, and the like. We had another hospital stay right before Christmas. That was pretty emotional, as it was my biggest fear that we’d spend another Christmas in the hospital. Again, Gabe missed out on the school Christmas festivities, which really bummed him out. But, due to the incredible compassion and advocacy of our treating doctors (who are all A-M-A-Z-I-N-G), Gabriel was discharged on Christmas Eve and we got to spend Christmas at home, albeit it was with incredibly low counts but he was home and that was all that mattered to us.

We also got to have our first legitimate family vacation over MLK weekend. It had been more than a year and half since we had been able to go out of town – all four of us – and just have a great family holiday. It was fantastic! We loaded up the camper and headed north to the Modoc National Forest and went obsidian mining! Seriously, it was awesome. We came home with more obsidian than I can shake a stick at (several hundred pounds worth) and we’ve got grand plans for our next adventure up to the Modoc for more mining and exploring.

On the drive up to the Modoc.

The weekend was truly and adventure, filled with tree chopping, digging, cuts, blood, and exploration.

A perfect Fairbank Family vacation.

And who can miss Rebeka’s 3rd birthday.  It was a blast.

We were able to get out of town for an impromptu camping trip again a few weeks back.  We visiting Indian Grinding Rock State Park and just had a great time as a family.  It feels so good to be kind of normal, even if it only comes in waves.

Gabriel was also a guest speaker during the Northern Nevada Children’s Cancer Foundation’s Elevate Life Campaign.  Gabriel and I were interviewed by Dan Mason on KKOH here in town.  What a cool experience to be able to share with people in our community a little about our journey and to support the Northern Nevada Children’s Cancer Foundation’s fundraising efforts.

And a few weeks back Gabriel’s Cub Scout Pack did a community service project to reseed part of the area burned in the Washoe Drive Fire in January.  The Pack went out to Little Washoe Lake and spread seed over about two acres.  And, the pack got a bit of press, and Gabriel’s picture made the front page of the newspaper!

Probably the most difficult part about this phase of treatment is that Gabriel no longer looks and acts like a sick kid (not that he’s often really looked that bad). But, it’s easy for people to forget that he’s still undergoing treatment. We’ve still got a very long road ahead of us.

For example, last week, despite all efforts to work out his oral chemo, we’re still on a roller coaster ride.  Gabe’s counts dropped below 750, and they stopped his oral chemotherapy to hopefully avoid ending back up in the hospital with an infection and zero immune system.  But, we’re about 6 months into maintenance and we’re still trying to work out those ups and downs.  Dialing in the oral chemo is a huge challenge for everyone, the doctors, us and Gabriel.

And, even though Gabe doesn’t look or act sick, he’s still in a cancer kid.  The Cub Scout Pack had their pinewood derby, and even though Gabe’s counts were low, we let him go anyway.  He had to wear his mask, but he got to go.  And, his Den won Fastest Den!  How cool is that. 

Granted, the journey is getting easier by the day, but there’s still more than two years of treatment left, and that’s just still a long time. And, Gabe’s still going through a ton, emotionally and physically. But, he’s adapting to being back in school. He’s re-learning important social skills, and he’s got an incredible relationship with his sister, which I can only pray will continue throughout their lives.

So, there’s a quick update of the past several months. I’m not going to be such a stranger any longer. I’m out of my funk and there’s awesome things to share with everyone about my incredible and amazing family.

And, here’s a parting shot of Little Miss Fiesty.  She’s definitely gotten the short end of the attention stick this past year, but she’s a great kid and we sure love her to death 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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Consolidation & Radiation

We are making it through the consolidation phase of Gabriel’s treatment, and we’re at a low, so to speak.

The consolidation phase of treatment involves two cycles of various drugs.  As I believe I’ve previously talked about, Gabriel is part of a clinical study, and he was randomized to an arm where he is given a newer drug, nelarabine, which is expected to be more effective at eliminating the leukemia cells in his body.  In addition to the nelarabine, he gets other chemotherapy drugs, which unfortunately decimate his immune system.  Right now, we’re at a very low point in his treatment.  Essentially, the kid does not have an immune system right now and I hate that.  His red blood cell counts and platelet counts are also pretty low and he’ll probably have yet another blood transfusion next week.

And Gabriel, subconsciously, showed us what he thinks of cancer.

The past two weeks involved two interthical chemo treatments as well as a blood transfusion last week.  Gabe also got my least favorite med, also known as Peg in the Leg.  Fortunately, this time around he was given the shots while he was under anesthesia for his spinal tap.

Okay, funny story.  Once Chet and Gabe got home from his last spinal tap, etc.  Gabriel went potty and says “WHAT IS THIS?”  “PRINCESS BANDAGES!”

So, Wednesday we headed back to the Bay Area for the start of Radiation for Gabe.  Honestly, from a parents perspective, radiation was rough.  I don’t know whether it’s just the term “radiation.”  Or just knowing that we’re having to do so many horrible awful things to our child in order to get rid of this cancer.  I hate it.

A few weeks back Gabriel got his mask made.  Now we see the mask in full action for his radiation.  The purpose of the mask is to keep his head in place consistently between treatments so that they can perform the radiation precisely.

Once they get the radiation mask in place, Gabriel was such a trooper and just stayed so still for all the procedures.

It’s amazing how the process works.  The machine is amazing and the whole experience is overwhelming.  Once Gabriel was placed, we had to wait outside the room for them to do the treatment.

But it was nice to be able to watch him from the video monitor.

After Gabe’s radiation treatment was done, the weather was beautiful and we headed out to do some sight seeing.  First we drove over the Bay Bridge to San Fransisco.  We were just driving around and found this awesome overlook of the TransAmerica tower.

After we headed over to the Golden Gate Bridge.  It was nice to get out and look around a bit.

Gabriel wanted to hike down to Fort Point, so I took the car and drove around to meet them down at the bottom of the trail.

Got some family pictures.

 

Yesterday was a bit more of the same with respect to the radiation. We did some sight seeing and went out to Alameda to look at the retired ships and showed Gabriel the USS Hornet.  He wanted to take a tour of the ship, and we would have loved to.  But his counts are just too darn low and we can’t risk him being around other people and the like.

It was a pretty rough day yesterday in a lot of ways.  Gabriel is finally showing his frustration with this process.  Sadly, it’s coming out in his behavior with us.  Chet and I often feel as though we’re at the end of our rope.  We hate having to tell him “no” about doing things that we should be able to say “yes” to.  It sucks having to keep him isolated and away from friends.  He misses playing with his friends so much.  The other day all he wanted to do was play with his friends from school or Sam and Julia, and we have to tell him “no.”

The poor kid is just so isolated, yet he really has handled all this so well.  But, he is definitely demonstrating his breaking point with his caregivers, Chet, his grandparents, and me.  It’s such a hard experience as a parent, but just because he’s sick doesn’t mean the rules have changed.

We are looking forward so much to the next phase of treatment where Gabriel will be able to get out and do things with friends more.  But, until then we have one more round of nelarabine, cytoxin and ARaC before his counts will come back for a period of time.  Until then, we are trying our hardest to keep things real for him.

The isolation isn’t something you can prepare yourself for, nor is there any way to prepare you child for it.  And even though it’s only for a few months in the grand scheme of life, these are the important years for him for social development, making lifetime friends, and establishing those relationships.  And he can’t do it right now.  Frankly, it breaks my heart.

We’ll do our last radiation treatment today and then head home for the weekend.  It’s going to be an adventurous ride home with all the rain and snow.  Chet and Gabriel will be heading back here next week for more radiation.  Fortunately, once this is done, we’re done.  No more radiation for Gabriel.  Thank God for that.

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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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