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Posts Tagged ‘angry’

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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Tonight, as I was singing with Rebeka, “I have a joy, joy, joy, joy, joy in my heart…” I realized how incredibly blessed and fortunate I am and how blessed my family is.

Too often, Chet and I reflect on our past year. I’ll see pictures of Gabriel without hair or with a puffy Prednisone face or Rebeka a year younger, and I have to be honest – I’ll break down in tears. It’s so hard to explain how it makes you feel to walk along this path. Chet and I will talk about how much of this last year we missed just enjoying Rebeka as a sweet little two year old girl. Gabriel’s lost so much of his year, friendships, relationships and those types of experiences. I don’t want to say that as a family we’ve been robbed, but in a way, we have.  And, it’s difficult because Gabe doesn’t look sick anymore, but he’s still fighting cancer, and we’ve got a long journey ahead of us.  It’s so disheartening at times.

But, those are fleeting moments that pass almost as quickly as they come. And, I thank God for that.

And, then it is nights such as tonight, that remind me how incredibly blessed we are. How blessed I am. I have two beautiful children. Gabriel, is alive and doing amazingly well. I have a job I enjoy. I have an amazing husband. And I have a wonderful and supportive family. Truly, life does not get much better; and while we may have rough patches in this life, we’ve been given so many gifts that I can’t dwell in the sorrow, pain, or memories. They are the past and water under the bridge.

So, a couple of weekends back we had a family adventure. Kind of like this past year, what was anticipated to be sunny, beautiful and full of fun – instead,  our weekend was filled with unexpected turns of events, surprises with silver linings, ups, downs, and a beautiful conclusion to the weekend.

Now that I’m a dedicated state employee, I get the pleasure of furlough days. Honestly, I do mean it’s a pleasure. For me, it’s been a blessing, as I wouldn’t have had the opportunity to get a day off this early in my employment except for the furlough day. So, I actually kind of like it. We planned my furlough day for a Friday so that we could take advantage of a long weekend. We knew we’d head out camping.

Originally, we thought about going to Sequoia and Kings Canyon National Parks, but after thinking long and hard, we decided that was just too far to drive for a 3 day weekend. Then we thought about heading to Yosemite National Park, but when we looked at the weather forecast, they were forecasted to get a couple of feet of snow – and that was not inviting to us, considering we were hoping to get some hiking in. NEXT!

Then we started looking at other options: Berlin-Ichthyologist State Park? Lava Beds National Monument? Montana De Oro State Park? North-central California coast? Bishop, eastern Sierra? Chet started checking out the forecast and after much evaluation, trepidation, discussion, and analysis, we decided to head to the Bishop, California area. The forecast was snow Thursday night, cool and sunny Friday, and warmer and sunny Saturday and Sunday. Keep that fantastic forecast in mind.

Friday morning we have the camper loaded, get the kids loaded and head off on our weekend adventure. No real set plans. We had no idea where we’d camp. But the few things we knew we’d do were: (1) stop at Mammoth Brewing and grab a couple growlers of beer; (2) stop at Schatt’s Bakery in Bishop and get some cheese bread; (3) get out for a nice hike.

About an hour from home, Rebeka asks for her nite-nites (blankets). At that point, Chet and I realize that we forgot to grab them. Oy! Rebeka moves into a full-blown fit. I tried negotiating with her (’cause there was NO way we were going to turn around over blankets) and offered that when we got to Bishop, we’d stop and buy her a new SPECIAL nite-nite just for camping. That worked for a little while, but as soon as the distraction passed, it was back to a whining session for her blankets. And, yes, that continued off and on for the whole remaining 2 hours (give or take) to Bishop.

Fortunately, once we got to Bishop, the K-Mart served us well and Rebeka was attached to a new blanket. Whew.

Next, after making the required stops (groceries, Schatt’s, fuel & propane) it was time to decide where to camp. After looking at the maps and a stop to the local National Forest Office, we decided to head up to Grandview campground in the White Mountains. It’s on the road to the Bristlecone Forest, and Chet was told by the Forest Ranger that while the road was closed still for the winter to the Bristlecone groves, it was only a 2 mile hike in from the gate. So, because the hike sounded like a terrific Saturday morning hike with the kids and the campground was just a couple of miles down the road – off we went!

We found this beautifully isolated, and desolate, campground. It was a bit cooler than we expected. But, as soon as we picked our campsite, popped up the camper, Chet and Gabe got the fire going and we got things set up, it started to snow.

Now, it’s time to remember that forecast I mentioned before.

And, I mean that it started to SNOW! And snow and snow.

After a delightful dinner of pizza and Mammoth beer, we hunkered down.  If I haven’t mentioned, I love our camp oven.  It’s AWESOME!!!

Then, in the middle of the night, I wake up to Chet peering out the window. Okay, it was windy, really windy, and all night long in between the gusts you would hear the snow hitting the camper. So, I ask Chet “what’s up.” Chet responds “call me crazy, but I think we should bug out of here right now.” To which I respond “you’re [bleeping] crazy!” and then I rolled back over and tried to go back to sleep.

The next morning we woke up to about 6-8 inches of snow on the ground. Yah, brilliant.

A pot of coffee and a quick pack up, we headed out to drive down the mountain to Big Pine to be lower for making breakfast. As we were driving out, we thought we’d try to head up to the trailhead – just to see if we could make it (and we’re a glutton for punishment). And, we got about a ¼ mile from the gate (by our best estimate), but the snow drifts were just too deep and while we like an adventure, getting stuck isn’t an adventure for us.

No hike to the see the oldest trees for us this weekend.

We headed down back to Big Pine and took a break at the local park. The kids had a blast playing while Chet shoveled the snow off the roof of the camper and I got breakfast cooked.

It was all fun and games until Rebeka went flying off the zipline. Shhh, that’s our little secret – Chet doesn’t need to know that I shared that.

After breakfast, more coffee and some play time, we all headed back up to Bishop and do some browsing at the backpacking stores. At that point, it’s time to decide where to head to next.

Considering there was still a ton of snow in the mountains. Remember the forecast… And it was drizzling in Bishop, we decided to continue north and maybe camp near Bodie State Park. But, then we decided to take Highway 120 from Benton to Lee Vining, because there’s a fantastic 5 mile stretch of road that rolls and is quite fun to drive – especially with kids.

After making out way back to 395, we decided to continue north and Chet suggested camping between Bridgeport, CA and Smith Valley, NV – there’s some fantastic mountains east of the Sweetwater range. And in those mountains we found a perfect campsite with a great fire ring, plenty of wood to collect, and isolated. It was awesome.

We park, we get the camper set up, I get dinner going, Chet and Gabe get the fire going and guess what – IT STARTED TO SNOW!

All I could say was “are you kidding me!” Yes, I really said that – multiple times. Fortunately though, this time it didn’t snow that much or for very long, and we were able to enjoy a nice dinner and Chet and the kids had an amazing fire.

I mean A-M-A-Z-I-N-G!

But I will be honest, when it started snowing again (remember the forecast) Chet and I were so frustrated, we almost decided to head back home. I’m glad we didn’t.

The next morning, we decided to head back to Bodie State Park. Rather, instead of taking the direct route (back to 395) we decided to take the back road from Hawthorn.

The mountains were absolutely beautiful in the morning.

Off we went and it was beautiful, the road heads up a canyon and is just awesome. It’s definitely 4×4 required, but it wasn’t too bad (especially considering some of the Nevada mud slick road we ended up driving on for a while). And, it was great, until we hit the sign regarding the road not being maintained (if you’re coming down from Bodie, not from the direction we came). There we encountered a spring, and there was a bit of a stream crossing across a meadow. No big deal, right? Stream crossing to the left, mud bog to the right. Easy choice – keep left and cross the stream. At least, that’s what we decided (and there might have been some taunting not so P.C. words said by me to Chet about being a weenie – but I didn’t use the word weenie). And that was a great idea until the water was …. well …. DEEP. I mean, like to the top of the wheel wells, mid-way up the doors deep. Oh, and our truck doesn’t have a snorkel.

We had an “oh no” moment.

A quick shift into reverse and we were fortunate to get out before we flooded the engine. Whew! So, through the mud bog we went, and that was a challenge in of itself. We almost ended up high centered, as it was deep in its own right.

We made it to Bodie, in one piece, not stuck, and in good spirits. That was a win. Then we got to tour Bodie, which was a very cool experience.

Yes, experiences like this just continue to build on how fortunate and blessed we are as a family. Cancer, what cancer. We kick cancer’s butt and we’re not about to let it beat us!

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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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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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Since Gabriel was diagnosed with leukemia, there really has only been one word that has struck fear in our hearts – FEVER.  A fever means hospitalization, the possibility of an air ambulance trip to Oakland, a lot of unknown.  In our efforts to keep this nasty word out of our vocabulary when dealing with Gabriel, we have been extraordinarily vigilant about protecting Gabriel.  As people close to us know, we have been totally isolated Gabriel and ourselves.

Literally, Gabriel goes to clinic, or the hospital, and our house.  Since his diagnosis, he’s been to my parents house once, in one large store and one small store.  That’s it.

So, imagine our despair when Thursday evening we had to face the dreaded “F” word.  No, not that “F” word …the fever word.  Yes, Thursday, Gabriel got a fever.  Fear, anxiety and uncertainty were flooding over Chet and I as we tried to come to grips with the reality.  So after several calls with Oakland Children’s on-call oncologist, Gabriel and I finally headed off to Saint Mary’s E.R.  The entire drive to the hospital, I was just praying that we wouldn’t end up no an air ambulance and that we were wrong, that there wasn’t a fever.

Unfortunately, we weren’t wrong.  So, after several hours at the E.R., the decision was finally made to transfer Gabriel to Renown Medical Center to be admitted.  The decision to transfer him was based on the fact that Saint Mary’s pediatric ICU wasn’t capable of caring for him since he’s extremely neutropenic.  We finally got out of Saint Mary’s and over to Renown around 3am.  What a l-o-n-g night.

We don’t know what the cause of his fever is.  But we do know a few things.  We know that his ANC is very low, but yesterday’s low point of 144 was the bottom as today we’re moving back up and Gabriel still has a fever.  We will still be here until the fever is gone and his ANC is at an acceptably high enough level, and that will likely be several days, if not a better part of a week.

The difficulty with this isn’t so much the fact Gabriel has a fever.  The fever in a lot of ways is just par for the course in kids with leukemia, so we’re told. In fact, EVERYONE has been very surprised that this is our first time here with a fever.  So, in a lot of ways, I guess that’s just what we should have expected.  The difficulty is US.

We have tried so hard to avoid this.  We are neurotic about sanitation, cleaning, isolation, minimizing any risky contact.  And, yet, I feel like I’ve failed Gabriel in some way since this has happened.  Everyone has said that you can do everything right, and there is just no way to prevent a fever from happening at some point in time.  But, I am frustrated, because I still feel like somehow, we did something wrong.  Somehow something made it through our defenses, and it makes me upset.  I NEVER wanted this to happen, and yet it did.

We will probably never know the cause.  They are doing blood cultures, and as of now, there results are negative.  They keep doing cultures while we’re here to make sure something doesn’t “pop up.”  And, it could be anything causing this.  So, now we just sit and wait it out.

If you will continue to pray for Gabriel.  Please pray that his ANC counts come back up quickly and that this fever breaks soon.  Pray for Chet and I to have continued strength and perseverance as we continue to face new challenges and hurdles in this journey.  Pray for Gabriel to just be comfortable and know that the isolation and loneliness will be over soon and that life again will be normal.

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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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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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