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Posts Tagged ‘pain’

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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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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We made it.  The clock is started and the first dose of Nelarabine is done.

Gabriel and I made it to Children’s Hospital Oakland this afternoon around 4:30, and I don’t know why I’m always so surprised by how humbling it is to be here.  Within less than two hours of being back in the hospital I’m given example after example of how fortunate we have been and are throughout this entire process.  There is something about being reminded that we have been blessed beyond measure and no matter how rough our journey has been at times, our experience is really been easy compared to many many families.  Yet, thinking about how truly difficult this has been at times, I can’t even imagine how much more difficult some have it.

I don’t know why we’ve been so blessed.  The entirety of our experience has often forced me to reflect on some of the most difficult questions of my faith.  Why does God permit bad things to happen to kids?  Why do some kids suffer?  How can a loving God allow such adversity, difficulty and pain?

Truth is, I haven’t been able to answer my own questions.  I don’t know why.  But, I do know that for us, this experience has given us so much perspective.  I’ve become more compassionate to other people’s circumstances.  And I know that through the difficult days, we’ve been given opportunities to grow, each as individuals and together as a family.  And as backwards as it sounds, I truly believe that through LOVE, we’re forced to experience hardship because we grow and have experiences we wouldn’t ever otherwise have. By knowing and experiencing the hardship, we’ve learned LOVE. Not the emotion of love, but the action; LOVE as a verb.

It doesn’t make sense.  And, my heart hurts so much for some of the families here. And, as cliche as it is, “no pain, no gain.”  We have truly gained so much through all of the pain we have had.  I can’t say that is the same for every child and their family.  But, for us we have been so blessed by cancer.

Don’t get me wrong, if I could un-ring this bell, I think I would.  I HATE so much about it.  But, I can’t change the truth of our reality, and with the harsh elements of the truth, have been incredible experiences that I wouldn’t trade for anything.

Tonight start the official countdown to maintenance.  I am so grateful to be here.  Not only at this point in Gabe’s treatment, but here at the hospital.  We are surrounded by amazing nurses, doctors, and people here.  It feels oddly “comfortable” to show up.  All that we have standing between us and maintenance is 4 more doses of Nelarabine, a dose of Cytoxin, 8 doses of ARaC, two more spinal taps/lumbar punctures, one dose of Vincristin, one round of Peg-in-the-leg, and the wait for Gabe’s counts to come back up.  That’s it, and it’s so encouraging.

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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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Yes, I did just quote Joe Dirt. And, yes, I will freely admit to loving the movie.

Life’s a garden, dig it!

Image from http://www.themoviedb.org/movie/10956.

Anyway, things are moving along for Gabriel.  We’re starting to see a more frequent occurrence of morning nausea.  But, the Zofran does the trick in a jiffy and he’s back to his happy normal self within minutes, literally.

Yesterday, Gabriel had his first spinal tap/intrathecal chemo here in Reno followed up by starting week 2 of his ARaC and 6MP (a.k.a. mercaptopurine).  Gabriel has really maintained his high spirits throughout all of this, and for that we are just so incredibly grateful.

It was a relatively easy visit.  Gabriel occupied himself by removing the wrappers on the cheap crayons.

A little while later, Angie the Child Life gal, brought Gabriel a Valentines Day gift.

Then, ultimately, it was off to surgery, recovery and then chemo administration.

Tomorrow Gabriel will be getting another blood transfusion.  His counts are rapidly on their way down, especially his hemoglobin counts right now.  So, tomorrow morning Chet and Gabriel will head into town for a morning refresher, I mean, transfusion.  Hopefully that will hold us tight until next week when we’re in Oakland for his radiation.  He may need another transfusion next week, hopefully not, so only time will tell.

So, there’s the Gabe report.  He is doing great so far.

Thank you so much to everyone for all the thoughts and prayers you have been offering and giving these past couple months.  They truly mean so much, and as you can see, Gabriel is really doing quite well. Chet and I ask that you continue to pray for Gabe, and for us.

As every day goes by, in some ways the path gets more consistent, but right now it’s not any easier for us.  Granted, we’re doing well, but there are those moments when we both just feel utterly overwhelmed by the entire experience.

We never imagined that this would be a path laid before us.  I could have never imagined how difficult this journey would be.  And, it’s impossible to describe and express what it feels like.  There are so many balls that we are juggling and struggling to keep in the air, and so often we have to be reminded that we can’t rely on ourselves to give us the strength, perseverance and stamina to make it through the end.  Through this experience, we are finding ourselves more deeply rooted in our faith than ever.

It is so often remarkable to me how I, through my faith, diminish the angst because I know that the bigger picture items are completely out of my control.  And for me, to not bear the burden of all of this allows me to cope just a little bit better.

Unfortunately, the oppressiveness of the physical effects at this point feel unavoidable.  I never in my life imagined feeling so totally, completely and absolutely exhausted.  The phrase “burning the candle at both ends” has nothing on how this can just sap the very life from you.  And, that is my struggle at this point in time.  Hmm, maybe I need a blood transfusion.  Just kidding.

But, I know that for us, this too will pass.  Experiences, challenges and happenings in this life are placed before us not to hinder us but to temper us, making us stronger and less brittle and more resilient.

The LORD is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the LORD
Forever.

Palm 23

How right Joe Dirt was – life is a garden, we just need to dig it.  We are given a fertile field of opportunity, and when we cultivate it with love and care, we are rewarded with so much.  It is not easy work, it is tiring.  However, after all the hard work, we are rewarded with abundance.  And, that for me, my friends, is an amazing breath of fresh air.

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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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On the day to celebrate the birth of Jesus, I’m reflecting first on those things which are good and positive.

I’m thankful for Dr. Christopherson who, to me, amazingly detected something very very wrong with Gabriel and got us on the fast track to treatment.  I’m thankful for the wonderful Doctors and the nursing staff here at Oakland Children’s.  We have had so many answered prayers – I am a true believer in the power of prayer and positive thought.  Gabriel has responded remarkably well to his first Chemo treatment.  His white blood cell count has dropped incredibly.  His body is processing and eliminating the by products of the cell breakdown.  He’s been in good spirits today, he even got a visit from Santa and a GIANT bag of toys just for him.  Absolutely awesome.  Then Gabriel got to enjoy opening some gifts friends of ours left when they came for a visit the other day.  We feel so fortunate.

Yesterday, Gabriel had a very special visitor, Andy.  Andy is a cancer survivor who at age 2 was diagnosed and completed his treatment in November.  After spending a lot of time here at Oakland Children’s, Andy decided that he wanted to start a fund to buy furry friends for other kids going through the same thing.  Andy didn’t want any child to feel scared or alone.  So, this Christmas, Andy personally delivered bears to all the little boys and girls here in “5 South.”

Today has been a roller coaster of emotions for Chet and I today.  Exhaustion coupled with all the stress of going through what we’re dealing with, plus not being at our home with all our family enjoying our Christmas traditions really hurt my heart.  I know it seems somewhat selfish, but it is the honest truth.

And, I think being away from sweet Rebeka is starting to wear on us as well.  We know she is in good hands with Grandma and Grandpa, but we miss her.  Then, she decided to come down with a fever.  Oy.  Sometimes you feel as though you just can’t catch a break.  Even though she loves to run fevers for no apparent reason – she’s the queen of the “non-specific viral infection” diagnosis – when you’re dealing with an overload of information and no identifiable cause for Gabriel having leukemia, your brain just jumps to the worst case scenario.  All I want to do is hold her and hug her, but I can’t.  I can’t be two places at once, and I need to be here too with Gabriel right now.

There’s no other way to put it – this situation sucks.

Fortunately, at this point in time based upon the progress Gabriel has made, assuming he keeps responding to the treatments in a similar fashion, he should be home by the end of January.  That’s still a long time, but it’s just a month.  In the grand scheme of things, we can handle him being away from home for a month.  Chet and I can keep that in perspective.

Sadly, Gabriel doesn’t have that perspective and today we had his first full blown meltdown when it finally sunk in that he is going to be here for a whole month.  I can’t take that hurt away and I can’t change the outcome.  I have no control, and I hate it.

I’m his mom and I’m supposed to be able to protect him and take care of him.  And, I there isn’t a darn thing I can do to protect him from the heartache that accompanies the harsh realities of his condition and treatment.  But, I can be here for him.  I can hold him and hug him and cry with him.  And, well, sometimes I feel like that is the best I can do.

Fortunately, Dr. Marsh came to check on Gabriel, and she has the sweetest disposition and is so skilled at working with these kids.  She talked to him too.  And soon we got a few smiles back on his face.  Soon enough Chet’s parents were here and Gabriel was out of his room and enjoying their company while playing Lego Star Wars on the X-Box 360 in the play room with his Grandma, Grandpa, and Dad.  I just enjoyed sitting there with them all.

We continue the good fight.  We’re okay hating cancer.  We’re okay saying we’re going to kick its butt.  And we’re okay, because we’re going to make it through this coming out stronger and better than ever.  There are going to be good days, there are going to be bad days, and then there are going to be a lot of those days where there’s a mix of the two.   Today was just one of those days.

 

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