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Posts Tagged ‘love’

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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We interrupt your regularly scheduled programing to bring you this virtually live update.

I was going back and forth trying to decide whether to finish up the “Whole Lot of Catch-Up” series or to actually talk about stuff that’s happening now.  And, well, I’ve decided to provide a live and real time post.  Besides, most of the rest of the catching up involves Chet’s running…and that can wait, right?  Absolutely, so the updates on Western States and the Tahoe Rim Trail will come in due time.  Besides, I’m still trying to compile pictures for those posts.  I’m chronically bad at getting pictures at Chet’s running events anymore.

Onward!

As I’ve previously mentioned, Gabriel stared delayed intensification at the beginning of June.  That involved several weekly doses of the “Red Devil” a.k.a. Doxarubacin.  He tolerated the treatments remarkably well as his counts did not drop as we expected.  In fact, they didn’t drop hardly at all through all three of the treatments, which meant that Gabriel was able to be at the finish line at Tahoe Rim Trail, which was a pretty nice thing.

So, given the fact that his counts were holding steady, imagine our surprise last Tuesday when I called down to confirm that all systems were “go” for starting Nelarabine, the next phase in delayed intensification.  And, we were told that his counts were super low (344).  If you haven’t been privy to my detailed explanations of ANC counts or you’ve forgotten, you can get a refresher here.  We were pushed off a week, until today, assuming his counts were high enough (he has to be at least at 750 to start the next round of Chemo).

But, the flip side of Gabe’s next Chemo being pushed off was that we were all home together over the weekend.  And, this was the first weekend in weeks, no, months, that we haven’t had something going on.  Earlier in the week, after finding out that Gabriel wasn’t going to be in the hospital over the weekend, I had thought it would be nice to get out for a drive as a family, like around Lake Tahoe or something like that.

Saturday morning after cooking breakfast, putzing around the house and just generally being lazy, Chet suggested that we go for a drive.  My response was, let’s go.  We loaded up the car with more crap than we’ve ever normally loaded for just a drive.  But, life isn’t like it used to be.  So, now we are loaded with the “kit” Chet’s prepared which includes supplies to do a flush of Gabriel’s central line if necessary, red top wipes (hospital grade sanitizing wipes), Clorox wipes, paper plates, plastic silverware, paper towels, zip-lock bags, hand soap, and more.  We loaded changes of clothes for both kids, blankets, food, drinks, and yes, eventually the children.

We decided to head out and drive over Ebbetts Pass (CA HWY 4).  Just a couple miles before we got to Markleeville, CA, in an open field, Chet spotted a Mamma Bear and three cubs.

Unfortunately, I wasn’t able to get a better picture.  But, there they are in all their glory.  We spent a while just watching the bears up in the field.

Ultimately, we continued on our way, but not without stopping for some pictures of one of our favorite roadside sites along HWY 4.

There’s just something cool about this old homestead long the highway.  Then there’s the old trailer, which is a converted bus. It’s one of those things that just begs for pictures to be taken of it.

After the pictures, it was time to continue on.  We stopped at Bear Valley to grab some sandwiches for Chet and I to eat for lunch.  While Chet was in the deli, I whipped up some PB&J sandwiches for the kids.  Rebeka inhaled hers, only to be promptly puked up just as soon as we got back on the highway to head toward someplace to stop for a picnic and to let the kids run around. Ahh, thank goodness Chet loaded the “kit” because we had sufficient supplies to do an emergency clean up.  And, fortunately, I had packed extra clothes, so after a swift wipe down (Chet also packed the bath wipes from the hospital) and change, we were back in business.

While we were looking for some place to stop for lunch, we came upon Calaveras Big Trees State Park, and decided on a whim to stop there.  Chet and I have often talked about stopping here, we just never have.  So, this was the time and it was a very good decision.

We stopped and enjoyed lunch under the canopy of cedar and oak trees.

Rebeka was telling us some story here.

 

Gabriel was being overly dramatic about God only knows what here.

The kids got together for a picture, and it was completely amicable, I promise that Gabriel isn’t trying to choke Rebeka here. They were having a great time just running around and exploring.

Chet and the kids walk along a large fallen tree.

After a nice lunch, we decided to go to the South Grove and check out the Giant Sequoia trees which are the main attraction at the park.

We headed out for the 3.5 mile hike to view the groves and it was the most worthwhile adventure.  We saw hardly anyone out there and the kids enjoyed their trek.  Gabriel hiked the entire 3.5 miles and Rebeka did at least 2.5 miles of it, if not more.  It was awesome, the kids had a blast, Gabriel was so excited to be out there and Rebeka was beyond filthy by the time we made it back to the car, which made me appreciate the second change of clothes I threw into the bag.

Rebeka balancing on a log.

Beautiful big trees.

Amazing burl or stump, or as Gabriel named it, “the brain.”

She’s only hardly filthy in the picture.

One of the first Giant Sequoia we saw.

Gabriel approaching the base of the first Sequoia tree.

One of the larger Giant Sequoia’s we saw.

 

A little perspective as to the scale of the tree.

Looking up.

 

Inside an ancient hollow Giant Sequoia.

 

 

 

 

Getting out, hiking with the kids and just enjoying life was such a refreshing change.  It’s something that we’ve truly needed and I’m so grateful that we just decided to hit the road.  As I said to Chet somewhere along the hike, the $8 entry fee was the best eight-bucks I’ve spent in a very long time.  The kids had an amazing time, I had an amazing time and it was just awesome.

So, after we enjoyed a weekend as a family together, we were mentally gearing up for this weeks hospital admission. Again, we were surprised yesterday to find out his counts were still too low.  He was only up to 610.  Again we were pushed back for the start of Nelarabine, until hopefully Friday of this week.

We’ll find out tomorrow to find out whether we’re on for the this next round of Chemo.  Chet and I are so anxious to get this show on the road.  Once we start Nelarabine, we start the clock to maintenance, a point in Gabriel’s treatment we are all to anxious to get to. The difficulty with this phase of the treatment is that we’ve been able to feel somewhat normal, but not able to fully relax due to the fact that we never know were we are at in terms of Gabe’s immune system.  There’s a lot of uncertainty and associated anxiety.  We’ve tried to live a normal life, but no matter how close to normal we try to get, we just cannot dismiss the fact that we’re not there yet.

We have this hope and expectation that once we get to maintenance, low ANC counts will be few and far between.  At that point, Gabe will be able to start back at school.  We’ll be able to have a bit more of a normal social life as a family.  Life won’t be constantly in fear of an infection.  Now, in reality, Chet and I both acknowledge that our expectations are probably a little inflated at this point in time, but hopefully we’ll get there in time.

Until then, we just continue looking forward.  All will come in due time, and we are working on exercising patience and discipline.

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We are now one step closer to the new normal.

Chet and Gabriel headed down to Oakland on Monday to start the first of seven (I believe) nelarabine treatments.  As I believe I previously mentioned, nelarabine is a drug that they have found specifically targets the subtype of leukemia Gabriel has.

The first night went smoothly.  Gabriel tolerated the treatment very well, and well, we just feel incredibly blessed.

For Chet, the week has been a bit of a blur.  As he said on Tuesday, it’s like Groundhog Day, but he’s not Bill Murry waking up to Sonny & Cher every morning.

Tuesday and Wednesday’s treatments went well too.  We are so blessed that Gabriel has tolerated the medicines as well as he has.

Gabriel initially kept himself busy drawing pictures and playing with playdough.

But, then Gabriel felt comfortable going to the play room and he’s been spending a lot of time there.  He painted a poster that the staff loved so much that it is going to be framed and hung in “5 South.”  They snatched it away before Chet could get a picture of it.  So, once it’s framed and hung, we’ll take a picture of it to share.

This time around, Gabriel is in a shared room.  That could have been not so good, but Gabriel’s roommate is a young man who apparently is delightful!

Isn’t he adorable!  He’s receiving chemotherapy treatment for cancer too, but a different type of cancer than Gabriel.

So the days have been spent playing Lego’s Star Wars on the PS2, playing in the play room, showing off the pocket knife to other kids in the play room (would you expect anything else from Gabriel?) and just having a good time charming all the staff at Children’s Oakland.  Gabriel has even had a couple of the nurses that we had during his original stay in 5 South.

But, probably one of the most special moments came when Gabriel was able to give a gift to Dr. Annie.  A little background – Dr. Annie was the first doctor we saw when we arrived at Children’s in Oakland on December 23rd.  We were in the E.R. and in came this doctor.  She was very sweet.  Little did we know the true depth of her heart and her absolutely awesome bedside manner right away.  Later we learned that she was a Fellow with the Onocology group at Children’s and her rotation with in-patients would be over on December 31st.  We were bummed.  Afterall, it was Dr. Annie who taught Gabriel the “Fish Face.”

And it was Dr. Annie who really was the first person to crack Gabriel’s shell during that crucial first day at the hospital.  She was a compassionate and amazing person. And, we have it on good sources that the impact Gabe had on her was similar.

After we left Children’s at the beginning of January, Gabriel wanted to get Dr. Annie a special gift.  That was one of the people we were shopping for at the mineral store on that special shopping day out.  Today, Gabriel was able to see Dr. Annie and give her his gift.

On December 22, when we were told Gabriel had leukemia, the world was crashing down around us.  I couldn’t see the next day or even two or three days after.  All I thought on that day was that I was very likely going to loose my child.  Oh, I knew the survival rates for leukemia were good, but it was heart wrenching and crushing to get that kind of news.

But, through the whole process, God has held Gabriel, Chet and my hearts.  We can sit and try to figure out the “why” and the “whats.”  But, we will never know “what” caused his cancer and we’ll never know “why” he was afflicted.  And to try to figure out those questions is an exercise in futility.

However, many things have been made very clear to me and Chet.  What we have learned is that there is a bigger purpose behind his diagnosis.  We have had the opportunity to meet the most amazing people, and it all started with Dr. Annie.  We would have never had these experiences, relationships, and opportunities had this never happened to us.  And quite frankly, I don’t think I would want to miss out on these relationships and opportunities.

Don’t get me wrong, this is not an easy journey.  It is filled with heartache.  But, we have already been so blessed with new relationships, perspectives and opportunities, all of with we would have never had if this hadn’t happened.  And Gabriel is able to touch the hearts and souls of many more people because of this.

Gabriel has a reputation that precedes him.  He is known as the “little cowboy.”

Gabriel puts on his duds and heads to the doctors.  He truly is a little cowboy.  And, his personality just fits and brings people from all around to meet him.  But, why not, his smile and laugh is truly contagious!

I mean, I know I’m his mother, but dang, he’s stinking ADORABLE. And fun, I just love his personality.

Today was somewhat bitter sweet for me.  I really miss my boys.  They’ll be home tomorrow, and that will be glorious to have them home even if it’s just for the weekend.

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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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