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Posts Tagged ‘sick’

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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Gabriel is heading in to the final weeks of the interim maintenance phase of his treatment.

These past several weeks have been an interesting emotional roller coaster, and I just haven’t been able to find the pleasure in talking about the journey.  I have just felt empty.

It might be just be a bit of emotional burnout.  Maybe since we’ve reached somewhat of an slower phase of treatment and have been able to enjoy some relaxation of our neurotic germophobic existence, we’ve been able to just to feel a bit like ourselves.

So, how’s Gabe?  He’s doing well, all things considered.

We had yet another scare of central nervous system involvement due to a poorly prepared slide of Gabriel’s spinal fluid from a spinal tap here in town.  As a result, we had to make another trip to Oakland for a re-tap so that we could rule out CNS involvement.  Not only does this cause additional stress for Chet and I wondering of there’s something that has gone south.  But, it also results in duplicate expenses for our insurance and additional costs for us, as we end up having to make an unplanned trip to Oakland.

Fortunately, the oncology doctors from Children’s Hospital Oakland (CHO) are awesome, and they take amazing care of Gabriel and us, and the do over’s are not at all related to them or their quality.  And, because we know that the reliability and consistency of the results obtained from the procedures performed at CHO, Chet and I have decided that we’re going to have all the remaining spinal taps done in Oakland.

But our last trip to Oakland was great.  We ended up staying at a nice place (our regular digs were sold out).

Chet, Gabriel and I enjoyed a nice stroll along the waterfront.

We got to see an egret on the walk.

And Gabriel picked me some flowers along our stroll.

Gabriel has been getting escalating doses of methotrexate, and he tolerated the first 4 doses very well.  We think the last dose finally took a toll on him and that his counts dropped after the last dose.  We will find out tomorrow how he’s doing and what affect the last round of treatment had on him.

Isn’t he cute passed out from anesthesia?

We as a family have been struggling greatly with Gabe’s eating.  He has lost a considerable amount of weight and we’re greatly concerned about his well being.  At the last appointment, the doctor’s didn’t mention anything about his weight loss but the attending physician wasn’t one of the regular doctors who has been seeing Gabriel since he was diagnosed.  So, I’m not certain if she looked at the trends with his weight.  So, we’ll learn more tomorrow.

We’ve also been dealing with a lot more puking as of late.  Gabe’s been having a very difficult time keeping solids down, which has just made the challenge with respect to his eating greater.  Our journey continues.  Operation Leukemia Elimination continues, and the battlefield is constantly filled with new challenges and experiences.

A few weeks back, it occurred to me that how can different people compare their own struggles and difficulties?  The other night, I was reflecting a lot of this journey and thinking about the impact it’s had on all of us, and how it relates in this world.  As I was laying in bed I thought about how my feelings over the past several weeks.  And while, the stresses, challenges, and heartache I feel, it doesn’t make our challenges greater or more insignificant than any other person’s challenges.  I’ve had several friends apologize to me when sharing their own difficulties being addressed in their lives, saying that what we’re dealing with is so much worse.  But, is it?

Each of us are very different people.  We are all unique creations, with distinct emotions, different tolerances, and different life experiences to draw upon.  What may bring me to my knees emotionally, someone else can take in stride.  And, just because we’re dealing with what we are, does not in any way diminish the significance or importance of another’s experiences.  The experiences are simply different.

So, it’s time to feel excited again.  We’re getting closer to maintenance.  It’s almost summer (well, according to the calendar).  And we’ve got lots of adventures waiting for us over the summer…and a lot of it doesn’t involve cancer treatment.  It’s time to be refreshed and rejuvenated.

I’m finally feeling excited to share with everyone things that are going on in our lives outside of treatment.  I need to share about the Silver State 50/50 and more about the golf tourney. Chet’s got the Western States 100 miler coming up here in just a few weeks followed by the Tahoe Rim Trail 100.  There are so many cool adventures coming!  I can’t wait to bring you all along with us.

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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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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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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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Alas, I promised everyone that I would continue on with more about Gabriel’s hair loss.  And, I will not disappoint for fear of being chastised.

The radiation eradicated his hair.  It was starting to grow back after he first started loosing it and then WHAM…I guess that is how you would describe massive clumps of hair coming out.

Fortunately, Gabriel was really cool about it.  He pretty much asked that we cut his hair again.  We suggested shaving it close as close as possible and he was good with it.  So, this was the before image –

And, off it came.

And, Chet being the good Dad, he also joined Gabe in his hair adventures.

And Chet after.

And the two boys, with their matching hair cuts.

So, there you have it – the hair loss update.  I offered to shave my head too, but Gabriel wasn’t too keen on the idea.  I’m okay with that given it might be a bit awkward with my job.

I know there is so much more to update on…its just by the time the evening comes I really just am too tired to think to hard about much of anything.  Tonight is no exception.  But, I’ll give it my best.

Tuesday, Chet and Gabriel will head back to Oakland for another hospital admission for the next round of nelarabine.  This trip, Chet and I are splitting the time in the hospital with Gabriel – we will each take two nights.  After Gabriel and I get home on Saturday, Gabe will have two days here and then he and Chet will head back down to Oakland for one more overnight hospital admission for cytoxian.  And, hopefully, that will be the last of our hospital visits for several weeks.

This weekend we did a “soft launch” of our fundraising efforts.  While fortunately, Chet and I have been blessed with tremendous family support as well as insurance, there are certain elements that have not been covered by insurance and the cost of traveling back and forth to California has truly began to take it’s toll.  We have put together a medical trust fund for Gabriel and we’re doing some things to provide opportunities for people to support Gabriel.  Part of Chet and my commitment is that once we’ve been able to address the expenses and bills that we’ve incurred thus far as well providing for the remainder of his treatment, any remaining funds in the medical trust fund will be donated to a qualifying 501(c)(3) organization which provides assistance to families in our area who are faced with the diagnosis of a their child with a life threatening illness.  While Chet and I are committed to supporting leukemia awareness and fighting for a cure for leukemia – we’re well aware that there are many different catastrophic illnesses children can be diagnosed with besides ALL.  Our hope is that we can pay it forward not only with what we can put together, but that our fundraising efforts will provide sustainable contributions to whichever organization we ultimately select.

I hope to finish the details in the next couple days – so stay tuned for a formal “official” launch of Operation Leukemia Elimination – Battle For Gabriel.  Here’s a tiny little teaser for everyone…

Finally, to provide a little update.  Last Tuesday, Chet and I faced one of the certain to be many speed bumps in this journey.  Of course, just as we were feeling more comfortable and normal in all of this, we received a call from one of Gabriel’s treating oncologists.  You see, every time they do a lumbar puncture and intrathecal chemo treatment on Gabriel, they take a sample of the spinal fluid.  When those tests are done here in Reno, the clinic makes a slide here and then sends the slide to Oakland for their pathologists to review.  Apparently on the two slides that were taken here the Pathologist found cells which were not expected.  He notified the oncology doctors who then did a more close examination.  As I understand it – and we’re still waiting for better information, as this was all communicated through a brief telephone call – after further review, only one of the slides appeared to have a “blast” cell, essentially a leukemia cell.

Now, understand that it can be very difficult to discern different types of cells, particularly on a limited sample, as was the case with this review.  And, this is confirmed from Chet’s sister, Katie, who is a microbiologist working with cancer cells.  Moreover, the doctor was very clear about wanting to keep us informed, but not wanting to alarm us.  So, they are going to do another lumbar puncture, this time without a chemotherapy treatment, when Chet and Gabriel head back down to Oakland for his cytoxian treatment.  They will take the sample and immediately send it out to the pathology lab for a full examination.

This kind of stuff just takes the wind out of your sails.  But, we have to keep in perspective that he’s had the radiation treatment, and the purpose is to kill off any errant cells which might be floating around.  However, it still is just a bit unnerving.

I presume there are a lot of questions floating around out there in the readership.  What does it mean?  Why?  Do you expect the cells?  In a lot of ways, we don’t have those answers yet.  Next week we will get more answers.  I can do a little explaining however.

First, when Gabriel was diagnosed, his body was absolutely inundated with leukemia.  His whole blood was effectively 97% leukemia cells.  So, when they did the very first lumbar puncture, with his level of infection, they expect that there will likely be some contamination from the tissue the needles passes through to get to the spinal fluid.  As such, when he was diagnosed, they found a very small number of lymphoblasts in his spinal fluid.  Due to the small number and his infection level at the time of diagnosis, they have to make certain assumptions, and one of those was that the lymphoblasts found in the spinal fluid sample were due to cross-contamination, not necessarily present in his spinal fluid.  Based upon those assumptions, the number of lymphoblasts present at that time, and other factors is how they determine what his risk level is and the associated treatment plan.

Now that they think they may have identified a lymphoblast in his spinal fluid – that may be a game changer, but it is unlikely.  At this point in time, as I can understand, they need to go back and reexamine his spinal fluid.  Its just like going back and reassessing whether the assumptions were accurate or inaccurate.  And, even if those assumption were inaccurate – say the presence of lymphoblasts in his spinal fluid wasn’t solely from cross-contamination – the doctors have to determine that it doesn’t change the treatment plan.

The likely outcome will be no change.  Even if there were some lyphoblasts present in his spinal fluid at the time of diagnosis, the numbers have to be above a certain level to result in a change in his treatment plan.  Basically, the doctors are just affirming that the rules haven’t changed even if the basis the assumptions were made are inaccurate.

At the end of the day, this is all likely a big ‘ol non-issue.  But, it just scrapes at sores in Chet and my heart that aren’t nearly close to healing.  It is so difficult to walk this path at times, and to have the information come at you just when you start to feel comfortable feels a lot like someone pulling the rug from under your feet.  You look at Gabriel, and other than the kid having no hair, you just can’t fathom that he’s sick.  He doesn’t look sick.  He doesn’t act sick.

I can’t express the times where I just sit there and shake my head, unable to process that this is happening.  Unable to comprehend how this could happen to a child.  Why a child should have to face such adversity, such pain, so much when they should be riding their bikes, playing with friends, going to movies, going to school.  I have always known and understood that life isn’t fair – but, really, it is so incredibly unfair that a child would have to endure this, or more as many other kids do.  There isn’t a day that goes by that I don’t recognize that we could have it so much worse.

Yet, despite the heartache, the added stress in our day, Chet and I know that we simply have no control.  We have to trust the doctors.  But, most importantly, we have to trust God to handle this.  And, when you give up feeble attempt at controlling any of this, it affords so much relief.  I’m not going to pretend that all the stress, all the heartache, all the anxiety goes away.  It doesn’t.  But, for us, when we realize that we don’t have a mustard seed of input into whether there are lymphoblasts or not in Gabriel’s spinal fluid – well, it just takes that much pressure off so that you can look ahead and the rest of that day, to tomorrow and the day after.

In short – Gabriel’s doing awesome.  He’s an amazing kid who continues to be just demonstrate an incredible amount of strength and fortitude through all this.  For that we are so blessed.

We are so grateful to all of our friends and family who have given us so much support throughout this process.  Sometimes when I look back and realize we have only been not even three months, I can’t believe it, it feels like a lifetime already.  But, each day gets easier.  We will have speed bumps, but they are just that something that jars you when you’re not paying attention, that’s it.

To all of you who are reading this, please continue to pray for him.  The power of prayer is awesome and immeasurable.  The love and support each of you have given us, thank you.  Even though we are horrible about sending thank you notes, making telephone calls and the like – we are just so blessed to have each of you in our lives, thank you.

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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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