It’s Been Too Long…

It has been far too long since our last update.  As I briefly mentioned, our former computer started giving us the dreaded blue screen of death.  So, deathly afraid of firing it up, it took Chet and I a few days to identify and pick up new hardware.  As you have probably surmised, we are back in business.

Shesh, so much has happened in the past week, I don’t know where to start.  Frankly, right now, I don’t even know where I left off.  So, let’s do a recap.

Last Wednesday, Chet and I headed to Oakland for two appointments.  The first was with the radiation oncologist who will likely be doing the radiation treatment on Gabriel.  Man, what an incredibly nice guy.  We have met so many wonderful and nice doctors, so for us to say that he really has been the nicest guy so far is saying an awful lot. It was a great meeting with him.  Gabriel will be getting 8 days of radiation treatment during this block, consolidation, of his treatment.  Since they don’t do it on weekends or holidays, Chet and Gabriel will have to be down for 5 days, come home for the weekend and then head back down for three more days.

The real bummer about the radiation is that it is really a very short treatment, less than 20 minutes a day.  So, Chet and Gabriel will be spending almost two weeks in Oakland for less than a total of 8 hours of appointment time (clinical time included in there).  And, since it’s all out patient, well, you get our drift – it’s mighty inconvenient.  But, it is what it is.  Gabriel only has to have radiation treatment once during his entire course of treatment, so it’s not that much time in the grand scheme of things.

Then on Thursday we had the big pow-wow with the Oncology docs to talk about the clinical trial Gabriel is in.  Here we discussed the potential issues surrounding Gabriel being a part of the clinical study in detail, discussed the various arms that he might be a part of.  Through the course of the conversations we were informed that Gabriel is classified as intermediate risk (within the disease), which is pretty good.  Ideally, he’d be classified as low risk, but due to the fact that his white blood cell count was off the charts when he was admitted along with the fact that when the did the first lumbar puncture and analyzed his spinal fluid they saw some lymphoblasts (but not necessarily leukemia) he’s an intermediate risk.  They don’t believe he actually had leukemia in his spinal fluid at the time of diagnosis, as it appears that the lyphoblasts were likely found due to contamination from the tissue they had to pass through to get to the spinal fluid, but they can’t say with 100-percent certainty that it wasn’t there either.  So, it is what it is. We are so grateful and blessed that he wasn’t classified as high risk, which is where he was at when he was diagnosed.  So we’ll take whatever good news we can get.

So, with him being classified as intermediate risk, there were four potential treatment arms.  Without going into a lot of techno-speak, I’ll just say that at the end of it all, Chet and I decided to take the roll of the dice and have him randomized into the clinical study.  He was randomized to arm “b” or the second arm – basically the conventional treatment of ALL T-cell with the addition of a new drug, nelarabine, which has been specifically developed to treat t-cell ALL.  The plus side of this is that the doctors hypothesize that nelarabine will be more effective at eliminating the t-cell variety of lekemia from the body than the standard treatment, which is the purpose of the study essentially, well along with some other mumbo jumbo.  Ultimately, what it means to us is that there is a likelihood that Gabriel will have greater odds of long term remission than had he received the conventional treatment alone.

With that decision being made and done, the next step was for them to get everything ready, have Gabriel admitted into the hospital that afternoon and start his course of treatment.  We were sent off to grab some lunch and wait for a call letting us know they were ready for him.  You see, some of the chemotherapy drugs require hospital admissions to assure that the child receives enough fluids to flush the drugs from the system after they are administered.  Such is the case with the nelarabine.  And, the nelarabine is administered over several 5 day successions, so each time it is administered, it requires a five day hospital admission.  Which is why we had to wait for them to get all those things in order.

Off we went to grab some food and do a little stroll down memory lane.  We headed out to Danville, and showed Gabriel where Chet used to live years ago.  We saw the swimming pool Chet did his swim team practices in.  We looked at the big eucalyptus tree that Chet and his friends used to play under.  We drove over the creeks Chet used to play in.  And then we grabbed some frozen yogurt and started heading back to Oakland.

On our way back, we got the call.  Except, it wasn’t the call we were expecting.  Dr. T, the attending called to let us know that they wouldn’t be admitting Gabriel that night because they only had one dose of the medication and they didn’t want to start him on it until hey had all the meds in hand, and they had been requested from the National Cancer Institute.  The medication was expected to be delivered Friday.  After that call, Chet and I decided to head back to Reno, and a good decision it was. Gabriel and Chet finally headed back to Oakland for the start of the nelarabine and his consolidation phase of treatment today.

It truly worked out and we are so blessed.  Gabriel got to do some horseback riding with Charlie on Saturday.  Sunday, we were able to enjoy as a family, Rebeka’s 2nd birthday.  I have a ton of pictures to put up, but I haven’t gotten everything set up yet to do the transfer.  So, I just have to leave that as a teaser to get you to come back tomorrow.

While it was so stressful going through the doctor’s appointments and then having a daily waiting game to get the call to head to Oakland all weekend, we are just so incredibly blessed.  The delay truly appears to have worked out in our favor and given all that we are facing, things  have truly been moving along smoothly.

To all our friends, family, and even you strangers reading this – thank you for your support.  Thank you for your prayers.  Thank you for just being here for us.  I know it sounds so trivial, but knowing that you are coming here regularly to check up on us, to hear how Gabriel is doing and how we are all surviving this new reality means so very much to Chet, Gabriel and I.  We can’t express how humbling, yet encouraging your support, well wishes and good thoughts are.  Thank you.

I’ll give Rebeka some attention tomorrow and share about her 2nd birthday and get some pictures from the past week put up.  Until next time.

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Checking in…

There will be an update soon, I promise. The last couple of days have been busy, intense, and with lots of news. Unfortunately, this all coincides while our computer is giving us the dreaded “blue screen of death” more frequently. As I’m terrified of loosing two years of pictures, videos, etc. I refuse to turn it on again until I have a new backup drive to, in rapid succession, move all our memories (oh yah, and Chet’s business stuff) into safe storage and ultimately onto a new computer. Until then, know all is well and we’ll update as soon as we can.

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The Calm Before The Storm

This weekend was lovely, absolutely lovely.  It is just such an amazing feeling to have your kid able to do real life things.  We are daily seeing more and more of “Gabriel” coming back.

Friday we met with Gabriel’s school to get him set up to start doing home school until he can go back to school.  Paperwork is signed, and so we should get all the arrangements in place.  But, it’s nice to have that ball rolling.

After all that was done, Gabriel and I went to the mineral store and he did some special shopping.  After the mineral store, we went to REI and picked up a new pair of sunglasses for him and gloves for Rebeka.  Then it was off back home.

But, Gabriel and I were able to get out of the house and it was awesome.  Totally awesome.

Saturday, Gabriel and I had a Toy Story movie marathon.  After Gabriel told me he didn’t like Toy Story, we all very much enjoyed all three movies.  Gabriel, Rebeka and I just chilled while Chet went out for an awesome birthday run with our friend George.

Saturday afternoon, Gabriel got a special visitor, Charlie.  Charlie is our neighbor Petra’s horse.  Charlie has been having some problems with her back leg and finally got the all clear for some good exercise and light riding by a little boy.

Charlie and Gabriel had an great time enjoying each others company and offered a great opportunity for rehabilitation for both of them.

Gabriel kept wanting to go faster and faster.  Charlie kept giving Petra the “look” (yes, all you men know the “look”).

But, it was just awesome to watch the two of them out there.

We were able to cap off the Saturday ride with lots of smiles and a photo opportunity with Gabriel’s new cowboy hat.

Today, Gabriel spent most of the day outside with his Grandma just enjoying the sunshine and working around the yard.

It’s been totally incredible to see my baby boy come back to himself.  He was off the prednisone last Thursday, and like a light switch, the eating was turned off.  No more potato chip cravings, no more popcorn cravings, no more eating like a horse.  I never thought in my life that I would be happy to see my boy eating like a bird again.  But, his enthusiasm for going outside and just working hard is back, and that is just one of those things that makes you feel amazing as a parent.

The other incredible development has been the fact that we’re already starting to see his face come back.  Now, don’t get me wrong, he still has the moon face, but it’s starting to come back, little by little.  And that just makes me feel so joyful.

And every once in a while, you just get a glimpse of his old face, our Gabriel’s face

There’s my boy.  Here’s the calm before the next storm.

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The Art of Neutrophils

Neutrophils are the most abundant type of white blood cells and form an essential part of the immune system.  You see, as I understand it, we have two arms of our immune system, an innate immune system and an adaptive immune system.  There’s a lot of technical mumbo jumbo about the functions of the different immune systems, but in the “idiot’s guide” terms I can understand, the neutrophils and your innate immune system is what give you the first line of defense against all things new and old and the adaptive immune system is your immune systems memory bank and and provides the arsenal for things that you’ve dealt with before.

Does your head hurt?  Mine does sometimes when I try to wrap my brain about these things.

Anyway, I’ve talked in the past about Gabriel’s immune system and his ANC (absolute neutrophil count) levels and how those impact what he can do.  The ANC is a mathematical calculation looking at his innate immune systems ability to combat infection.

Gabriel’s ANC levels tell us whether he has the ability to fight infection and to what extent.  Basically, it’s our litmus test on what activities we can reasonably let him do.

Yesterday, Gabriel went back down to Oakland Children’s Hospital for another physical examination and his final bone marrow aspiration for the induction phase of his treatment.  He also had a lumbar puncture and intrathecial chemotherapy treatment.  During Gabriel’s physical exam, Chet was informed that Gabe’s ANC count from Monday was over 2000.  That was awesome news for us, it meant that Gabriel’s immune system was rebounding very well (he was still under 250 when we left Oakland two weeks prior) even after his last chemotherapy treatment.

When Chet told me this, I was just so happy.  I knew it meant that Gabriel would be able to do more things around the house.  It also meant that the physicians were comfortable giving Gabriel the all clear to go horseback riding, spend some time working in the yard and garden, and to do whittling.  Things we’ve been having to say “no” to lately.

After Gabe’s procedures, Chet was given the results from yesterday’s blood tests (he gets blood tests twice a week right now) and his ANC level was over 4000.  That’s just awesome and absolutely the power of answered prayers.

With and ANC count of over 4000, we don’t have to be confined home.  Gabriel was able to walk around and leave the hospital without wearing a mask.  It just is awesome to not feel as though you’re walking on egg shells with him afraid you might be carrying an errant germ that is sticking around somewhere.

In celebration, we’re going to head to the mineral store tomorrow.  Gabriel has a couple special purchases he would like to make.  With the news, I’m just so filled with joy and amazement at how well his body has tolerated the treatment so far.  He’s just been so blessed by the caring thoughts and prayers of everyone.  Thank you so much, we truly appreciate your support and love.

Unfortunately, Chet didn’t take too many pictures, so I don’t really have any to share (the three he has are on his phone and well, I didn’t get them transferred).  But, with such awesome news as this, who needs pictures?

Next week we head back to Oakland for a consultation with the Radiation Oncologist and Gabriel will begin his next round of treatment – the consolidation phase.  We’ll find out next week which treatment plan he gets randomized to.  It will either be an overnight admission or a five-day admission.

However, in the meantime we’ve got fun plans including horseback riding (hopefully), mineral shopping, movie watching and snowshoeing.  What a great weekend to look forward to.

We have been blessed with such an amazing kid who providing many opportunities to learn new things.  Don’t believe me?  You now know a whole lot more about neutrophils than you did before this all happened, don’t ‘cha.

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Giving It Up.

This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.

Joshua 1:9 (NLT)

The first time I picked up my bible after Gabriel was diagnosed with cancer, this was the verse I turned to.  God extended his loving hand of grace and comfort and gave me the words to carry me through this journey.  Honestly while at the hospital I felt strong and courageous.  I did not feel fear.

Yet, since we’ve been home, there are time when I feel weak, I feel discouraged, I feel like there is so much responsibility placed on Chet and my shoulders that I could just be crushed under its weight.

I suppose that is part of the emotional roller coaster.

Even though I have fully placed my faith in God from the moment I received that life altering telephone call, I’m finding that I am more and more trying to be in control.  I’m trying to take the reins and assert my authority and control what I cannot.  God has been gently nudging me and whispering in my conscious, reminding me that I am not the one in control.  I have a difficult time accepting that, but I am sometimes reminded that I need to just let go.  The burden is truly easier to bear when I’m not pretending that I have some sort of say in the ultimate outcome.

Trust in the LORD with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths.

Proverbs 3:5-6 (NKJ)

I’ve carried that verse with me for many years, yet it is oh so easy for me to fall back and try lean on my understanding, use my understanding, knowledge and skills to influence the outcome of things I just don’t have any business trying to influence.  The times when I totally surrender my heart to God and let him control, he does amazing and wonderful things.

Yet, I am human, stubborn and a slow learner.  I fall back to my ways.

So, I’m remembering right now the peace, calm and joy I felt when I fully surrendered Gabriel to God and left his care, health and outcomes in the hands of God.  I’m recalling the peace I felt trusting that God will guide the physicians to provide the best care for him.

Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.

Philippians 4:6-7 (The Message)

I know the sense of God’s wholeness and how through Him, your heart will be settled.  Thus, it’s time to let go of this worry.  I am giving it up.  I’m giving up my hearts insistence on knowing what the next treatment cycle for Gabriel will be.  I’m giving up feeling like I have control over the extent of leukemia cells which still are present throughout Gabriel’s body.  I’m giving up my futile efforts to change what cannot be changed.  I am lifting those concerns, worries and concerns to God and instead replacing those weights and burdens with the love and peace which I am assured through the love of Jesus.

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Before I forget, yet again …

Remember a while back I mentioned Gabriel got a visit from a couple players with the Oakland Raiders.

Here’s the link and here’s the picture.

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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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Operation Leukemia Elimination: Week 3

Wow, it’s amazing, we have been through this for three weeks already.  On one hand it seems like it’s been a lifetime on the other hand it seems like it’s just been several days.

Quick recap – we’ve reached remission in just two chemo treatments, had three bone marrow aspirations, two spinal taps and interthecial chemotherapy treatments, and a discharge from the hospital.  Pretty cool.

Today was Gabriel’s last chemo for the induction phase of his treatment.  We’ve made it through four chemo treatments, one during the day, and we have not yet had any nausea.  Thank you God!  This is seriously awesome.

This morning, Gabriel had his first visit at the Oakland Children’s Hospital Reno satellite location.  Gabriel was rather nervous starting today.

It is truly heartbreaking for me to see his face so puffy from the Prednisone.  I know it’s a side effect and that it will go away.  But, the moon face is just not my little boy.

Feeling anxious Gabriel got some hugs from his daddy.

After some hugs we got to meet some of the Reno staff.  We met the local Child Life specialist, who was awesome.  She gave Gabriel a “buddy” doll who has his own Broviac tube and hospital accessories.

After some hugs, they looked out the window and talked about all the landmarks we could see, including Peavine, Crystal Peak, and other places.

Next it was time for Gabriel’s blood draw.

That’s his Broviac tube, which makes it super easy not only for doing chemo treatments, but for doing blood draws.  No pokes.

After, since Gabriel is such a likable kid, he was delivered a Nerf shotgun.  Wholly smokes, who would have imagined it would be such a tremendous hit.  But it was, so we did some practice shooting in the exam room.

We tried to find a *safe* target …

Just like shooting Fish in a barrel.

After some time spent shooting it was time for chemo.  Gabriel decided to take his treatment with his hat on.

See, chemotherapy isn’t THAT bad.

One of the chemo drugs is bright red and is administered over 15 minutes.

This time gave us the opportunity to get more smiles and chuckles out of Gabriel.

Gabriel got a dose of hand sanitizer (investment advice – invest in a company that makes hand sanitizer, we’re going to be going through this stuff like it’s going out of style) and had some conversation with his dad about something or another.

So, despite having a lot of anxiety leading into the treatment this morning, all went well.  And we even met another young man – age 6 – from Reno who is going through treatment there too.  How cool is that, we may have a new playmate who also is under strict sanitation standards.

It was great, and we were able to leave with smiles.

Not too shabby for week 3.  I know I certainly cannot complain.

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Modern Homestead: The Wood Fired Cook Stove

I started this blog post a few months ago and never got it completed, until tonight.  There’s a Gabriel update at the bottom, but when there’s not a lot of really juicy things to report on Gabriel, I figure I might as well keep up with some of the other aspects of our life.

So, one thing Chet always wanted and I readily agreed to, was a wood fired cook stove.  The idea is so incredibly practical – the power can go out, you can loose natural gas, and you still have a source of heat and a stove to cook your meals.

After much searching, Chet found an Amish made cook stove with a glass door on the fire box.  And, we ordered it.  About three months later our custom Margin stove arrived and with the help of a couple friends a lot of grunting, it was moved into place.

So, we’ve had it and while it took a little getting used to, we have started to learn to use it and it is wonderful!

Is it not beautiful?  I think so.

Our house did not have a wood stove in the living room when we purchased it .  So, the process of preparing a space began.  Chet started by tearing out the wall that went between the living room and kitchen.  Unfortunately, I was out of town that whole weekend, so there are no photos to document his progress.

We decided that we’re aiming for a late 1800’s mining camp feel for the new house, so with that in mind, Chet conceptualized rusted metal panels for the back of the wall and we eventually decided of slate for the hearth.  I think it turned out nicely.

The process was a bit of work.  Chet cut out the wood floor where the hearth was to go (after taking out the wall).  We then installed the cement board and then did the tile work using 12×12 slate tiles.

The stove heats the house beautifully, and when we’ve got it cranking it will easily get the house up to 80 degrees.  Oooh, how I love to be able to walk around the house in a t-shirt and no socks in the middle of winter entirely warm and comfortable.

We’re still learning to cook on it and in it.  Once things settle down again that is one of my priorities – I can’t wait to bake bread in the oven.  But, until then we’ve cooked pies and various other things in it with good success.  And, well, there just isn’t anything like a pot of beans cooked on the stove top.

As for Gabriel, he has his next chemo treatment tomorrow here in Reno.  This will be his last chemo treatment in the induction phase.  This also means we are on the count down of prednisone and to his last bone marrow aspiration before moving into the consolidation phase of his treatment.  It will be interesting meeting a new team of doctors tomorrow, and it’s absolutely awesome to be able to do the treatment locally.

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It’s Not All About Us.

I got a C.S. Lewis quote via Twitter the other day,

God speaks into our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world – CSLewis

Well, yesterday I was being shouted at, and in my pain, I didn’t want to listen.  But, I’ve been afforded many opportunities to reflect and regain perspective in the last 24 hours.  When we were first facing this battle, I continually said out loud to family and friends that there is someone else out there having a worse day than us.  I lost that perspective yesterday.

We have it good, so very good.  I am humbled by the out pouring of love and support.  I am reminded, when reading the stories of other kids out there in the world who are facing much more difficult battles, that in the grand scheme of things, this is really a relatively small hill in our journey on this world.

I realize it is easy to become self absorbed and run the risk of a pity party when you’re at home.  At the hospital, we were surrounded by families who were facing much greater challenges.  We made friends with patients and their families who won’t be coming home any time soon, who have uncertain futures, who face months and months of hospital isolation and treatment.  I lost perspective.

Gabriel continues to do well at home.  He’s adjusting to being at home and the routine.

Mornings start out with a flush of his Broviac.

This is an illustration of his Broviac, except he has a single lumen (port) rather than the dual port.

So, Tuesday through Sunday, we flush the port with a saline solution.

This is followed by a dose of heparine.

Monday’s we do blood draws, which is the draw followed by the daily flush.

Then after the morning routine we have our drug administration time, which includes a dose of the Prednisone, Zantac, Calcium and depending on the day either an antibiotic or a dose of vitamin D. The drug routine is repeated at night.

This is repeated daily for the time being.  But, we’re on the countdown for the Prednisone, which is awesome.

Today has been a good day.  Gabriel got out and shot his bow and arrow and his Red Ryder BB gun.  Life is good, no, it is awesome.

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