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Archive for December, 2010

Gabriel is doing AWESOME!  Okay, I took a cue from Matt Hammitt, lead singer for the band Sanctus Real and primary author of Bowen’s Heart, and that is to be very judicious in the use of exclamation marks.  But, today is a joyful day worthy of emphasis.

Today Gabriel officially was taking off the I.V. full time!  This is truly wonderful news that he doesn’t have to be attached to the tube 24/7 right now.  He will still have the I.V. at night, but he’s been doing well enough and processing enough fluids orally that they were comfortable to allow him the freedom from being attached to the I.V. during the day.  I can’t tell you how much it made me smile just to think about it and to see him able to walk around without managing his tubes.

We got the results of his bone marrow and spinal tap, and both have moved positively in the right direction.  Gabriel has made significant progress.

Compounding the wonderful day, last nights round of chemo went effectively unnoticed by Gabriel.  It’s amazing, but he hasn’t had any of the unfortunate side effects from the Chemo so far.  He’s just been a happy, fun loving, bouncy little boy today, and those are things that just make Chet and I feel so fortunate and blessed.

Looking back on this past year, it’s been a amazing year.  Here is our 2010 in review:

After a 5 month marathon of remodeling, we sold our beloved Craftsman home in Reno and purchased our now beloved home in Washoe Valley.

We made a terrific trip to Lava Beds National Monument.

During the escrow closing and moving and getting adjusted, Gabriel has surgery to repair a perforated ear drum that hadn’t healed after one of his ear tubes fell out.

This past summer, Chet ran the Western States 100 in his best 100 miler time ever thanks to the hard pushing of George and Scott.

But, a 100 miler with Chet isn’t just focusing on the task at hand, it’s full of laughter and good times, including a bit of pre-race nervous energy expenditures.

(p.s. I left out the non “G” rated images)

Eating a healthy breakfast…

And then enjoying some well deserved time off the feet with your pacers.

Chet three weeks later ran the Tahoe Rim Trail 100 for the 5th consecutive year.

Gabriel started First Grade and Rebeka had her very first pedicure.

There’s been a bit of home remodeling.

I kind-of-sort-of got another half-marathon under my belt.

Found MY beer …

Gabriel became a Cub Scout.

And we ended the year with a bang here at the Children’s Hospital in Oakland.

Wishing everyone a Banana Happy New Year!

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Today Gabriel was indoctrinated into Induction Phase Round 2.  The induction phase of his treatment is the first month.  Essentially there are … umm … 5 phases, I think (remember this week has been a whirl wind).  The first six months, give or take, are broken into four different phases, basically one month, then two months, then another month and then another two months.  After these different series of treatments, then there will be the “maintenance” phase, which since he’s a boy, will last for two years.

So, today was effectively the beginning of Round 2 of induction.  We started out the morning famished, but unable to eat because of the procedure scheduled at 11 am.  He had is second interthecal chemo at the same time they did the spinal tap and a bone marrow draw.  We should hear the preliminary results tomorrow from the spinal fluid analysis and bone marrow count.

Gabriel was scared going into this mornings procedure, and who can blame him.  Last week was such a whirl wind, that it really didn’t hit him what was happening.  This time he had more time to think about it.  Chet and I were allowed into the operating room when he it was lights out for Gabriel.  Man, it’s amazing how fast that stuff works.  It was hysterical, when he woke up we were standing there in the recovery room and he said “when are they going to do the procedure.”  Chet and I just laughed.  After we told him it was already done, he asked why we were still in the operating room.  Again giggles all around.

After, Gabe was famished.  Well, he was famished before hand and when Becky, Chet’s mom, showed up with our breakfast this morning, he was even more hungry.  So, we stood strong with him and we didn’t eat until he was back from his surgery.  Man, were we ALL hungry.  It is funny what steroids will do to the kid, my little bird is eating, eating, eating.  I have never in my life seen this child eat so much.  Ironically, it’s more like he’s eating portions a regular kid would eat, but for Gabriel it’s a ton of food.  Chet and I are amazed.  He ate two ham sandwiches (well, one two slices of bread and the guts from another), a cheese pizza and some french fries.  You can all scold me later on being a bad mom and not getting a balanced meal with fruits and veggies.  That’s the other weird thing, he usually is really good about eating fruit and veggies, but here not so much.  They say the Prednisone can cause a change in your tastes, and I think that’s evident with this kid.  And he’s drinking milk like it is going out of style again.  Just this afternoon he drank at least 5 and I think close to 6 small school sized cartons of milk.  Dang.

This evening he got is second round of I.V. chemo.  The first round went very smooth and we didn’t have a lot of side effects.  We just pray that this week continues the same.  And we pray that his body continues to fight this nasty, evil, horrible, sucky cancer and his blood draws over the next couple days continue to show the same response as we’ve been seeing thus far.

We’re hoping to give this leukemia a sucker punch in the gut.

Chet and I are doing well.  After a rough day yesterday, particularly for Chet, we’re back in the game.  We had a lot of good times with Gabriel this evening.  There were lots of laughs, and we got to open a bunch of “fan mail” too, which Gabriel just couldn’t believe so many people would extend their hearts and be so generous to him.  Sadly, I was derelict in my photography duties, and didn’t take a single picture today.

Tonight Chet commented on how special this time is that we get to spend with Gabriel.  As unfortunate as our circumstances are, this is truly some amazing time that we are getting to spend together.  It’s so much fun just sitting around playing video games, it’s fun in our own Fairbank sort of twisted way, to try to keep Gabriel’s rambunctiousness contained as he’s bouncing around on the hospital bed.  It’s fun playing games and well, just doing stuff together.  These are memories that will be burned into each of our minds and will be fondly looked back upon.  My only regret is that Rebeka isn’t here to share this time with us.

So, since I was naughty and didn’t take any pictures today, I figured I could share some of my favorite pictures of my kids, Gabriel and Rebeka.

In the words of Porky the Pig “Th-th-th-that’s all folks!”   Good night and sweet dreams to everyone from “5 South.”

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Well, exactly one week ago today everything changed.  What a week it has been.

Today has been an interesting day in may respects.

First, we’re gearing up for Gabriel to have his next spinal tap and intrathecal chemo treatment as well as another bone marrow draw.  Which is effectively a repeat from last week.  Then they’ll determine that the planned chemo round for tomorrow is still on target and administer that.  Fortunately, it appears Gabriel’s chest x-ray from yesterday afternoon was clear.  But, his platelet levels were continuing to drop so they did a platelet transfusion today in preparation for tomorrows procedures.

We also met today with one of the people on the treatment team (I’ve met so many people this past week my head is still spinning).  The level of care we’re going to have to provide once we get home is a bit intimidating.  Blood draws, Broviac catheter care, understanding what limitations we’ll have based upon the blood test results combined with the continued chemotherapy treatments here and in Reno.

It is really quite intimidating to a degree.  However, we got some encouragement and there is definitely light at the end of this first tunnel. But, God willing things will continue to go very smooth.

Along with that, Chet and I have been getting trained on taking care of the Broviac and Chet took Gabriel’s blood draws today.  I’ll get my opportunity on Friday to do his blood draw.  Once we get out of here, we’ll be doing blood draws twice a week ourselves.  Wow, just wow.

For Gabriel, it was a pretty ordinary day.  He played in the playroom with Grandma Becky for a while and we played video games for a while.

Gabriel made a New Year’s Eve hat and built Lego’s.  Not a bad day if you’re 6 years old I do have to say.

Reflecting back on the past week, Gabriel has been incredible.  He hasn’t gotten too upset about too many things and just really has such a good attitude.  We were talking today about the fact that we’re going to have to do the blood draws at home and it started to bum him out a little.  But, we talked about the options, being here the whole time and the nurses doing it or being able to go home and mommy and daddy doing it.  Yah, home definitely sounded much better to him.

His misses his sister and is disappointed he wont be able to go back to school anytime soon.  I think the school thing is hitting me harder than him.  It’s hard, we just moved him to a new school and he was just starting to make friends and now this.  Humph.  My heart hurts so badly for that.  I know he wants to have friends and have time to spend with his friends, but if he’s not at school regularly as we go through the chemo treatments over the next several months, that is going to make it difficult to foster and maintain those friendships.  But, I’m trying to remember that this is a short term delay in life and there is a greater plan for Gabriel.

The stress, constant waking up at night and less than plush accommodations are definitely wearing on Chet and I.  Exhaustion is just the norm any more.  We get at best 6 hours of sleep at night in two hour stints.  Yet, as difficult as this is, I am just grateful that we are as blessed as we are.  Once we get home, we’ll be able to sleep for a full night as the round the clock checks, IV bags, and every two hour peeing will be over.  I recognize that as awful and frustrating as this is for us, there are worst diseases and more disruptive conditions we could be dealing with.  To all the parents with children with type-1 diabetes or other conditions that require constant around the clock care for years on end, you have my greatest empathy.

Thank you to all our friends, family, and even strangers who have stumbled upon this blog and shared our heartache, struggles and offered support and prayers.  I know I say it often, but we are truly appreciative of your support in this journey.  We are so grateful, I don’t feel as though I can say thank you often enough.

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Well, things are just rolling along and there isn’t a whole lot of stuff going on.  It’s a little like Ground Hog Day, except we get a different rotation of nurses and there are different doctors every once in a while.

Gabriel is doing really well.  It seems like he is starting to feel some of the side effects from all the drugs he has been taking and the Chemo.  The doctors keep saying that he is doing very well.  And, gosh, he looks like he’s doing really well.  But, you can tell that the disease is taking its toll on him.  His counts are down, but along with the positive aspects of that, it also means that the good blood cell counts are down too.

So, we are starting to gear up for the next round of this initial phase.  He will probably have another platelet transfusion tomorrow to get him ready for the surgical procedures on Thursday.  Along with the platelet transfusion, I’m expecting that he’ll have another whole blood transfusion.

But, before we can pull the trigger on this, we’re waiting to hear the results of his latest chest x-ray.  He’s had a cough and today Dr. Marsh thought she might have heard something in there.  So we are waiting to hear.  The good news is last week when this whole thing blew up, he had a chest x-ray before being transported to Oakland.  He was clear then, so if there is something brewing, they’ll be able to identify it early and get a handle on it ASAP.  So, we just continue to pray for his ongoing health and pray that we don’t have a case of pneumonia on our hands in addition to everything else.

Today Gabriel had some very special visitors – a couple of the Oakland Raiders football team and one of the Raideretts.  Of course, this was rather lost on Gabriel – ’cause if you know Chet and I, you know we’re not big football fans.  But, Gabriel got to meet the players and had his picture taken with them.  Gabriel was so sweet, he said they were very nice.  The Raiders will post pictures on their website, and when they are up I’ll link to them, but in the meantime this is all I’ve got.

Gabriel also started his own “Beads of Courage” set.  Beads of Courage is a program to allow children undergoing a serious illness to accumulate beads to symbolize the various experiences associated with their treatment.  For example you can get beads for ambulance rides, for pokes, for chemotherapy treatments, for transfusions, etc.  Gabe is well on his way of accumulating a good number of beads.

It is so difficult at times to watch Gabriel.  I can just see that he’s tired of being here.  He doesn’t complain.  He doesn’t cry.  He doesn’t whine.  Man, we are so incredibly blessed and fortunate that he is such a trooper.  But, all the same, my heart hurts to see him just looking bummed out.

But, things that raise his spirits – all the fan mail he’s been getting.  Oh, to everyone who has sent us fan mail, THANK YOU!  It really makes Gabriel so happy.  We are posting things around his room, so the pictures, cards and letters are just so awesome.  From Chet, me, and especially Gabriel, thank you.  Everyone has been so generous and thoughtful.

Chet and I are doing okay.  The last couple of days have been hard on us emotionally.  Chet’s not feeling 100%, and with that he is very concerned about the what ifs.  It’s hard for him because it’s one of those things, is he sick or is it just allergies or what not.  He doesn’t want to run the risk of infecting Gabriel since really the biggest risk to Gabe at this time is the risk of infection.  But, he wants to spend time here with Gabriel.  It’s a difficult position to be in.  Tonight, Chet’s sleeping at the hotel with his mom.  I pray that he feels better in the morning and it’s just a combination of exhaustion, allergies, stress, and paranoia.

But, regardless, all that didn’t stop Chet from kickn’ it while texting on his new phone.

I’m starting to feel the strain of knowing I have responsibilities back home and so those pressures are starting to press upon me.  And, knowing that Rebeka is home and neither Chet or I are there with her is difficult too.  But, I’ll be heading back over the hill on Sunday to spend time with Rebeka and attend to my responsibilities there.  I’ll be coming back to Oakland spend time with Gabriel for his treatments, and I just pray that the next chemo treatments are as easy on him as his first.  But, I know that we’re going to have some rough days ahead.

Yet, despite all the stress, things are truly looking bright.  We are so fortunate to be surrounded by friends and family who are just freaking awesome – yes, that means YOU.  Despite the moments of feeling overwhelmed, overall things are good.

So, that’s the report from “5 South.”

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Shots that is.  No one likes shots.  Kids are terrified of shots.  And Gabriel got two very painful shots today.  I don’t know what was worse the anticipation of the shots since they applied Lydocaine lotion to the sites ahead of time or if they just hurt.  The doctors said they would be painful, so I’ll just have to assume they hurt, hurt like heck.  I haven’t heard Gabriel cry that hard, ever.

The silver lining on that painful cloud is the fact that God willing, this is the one and only time that he will have to have this medication given.  We sure hope so.

Otherwise, today was a good day.  Gabriel is clearly getting bored of being cooped up in 5 South, and to a degree, even video games are entertaining, but loosing their appeal (can we all give a big Hallelujah).  But, he is such a trooper.  He hasn’t complained, he is being so good and being so stinking strong.  It is amazing to me because he has held it together better than either Chet or I and he’s the one with tubes coming out of his body, being poked, prodded, touched and palpated constantly.  Yet, he is showing some remarkable calm and presence through all this.  The kid is really something.

Other than the one new drug today, it was really unremarkable otherwise.  We just hung out with Grandma and Grandpa.  There was some sculptie crafting, Lego building, video game playing, book reading, and lots of laughing.  Ohh, my favorite part of all of this is just being able to hear Gabriel’s laughter continue.

We even had a visitor – friends from Gabriel’s Cub Scout Den, Dirk and his parents were driving through the area and stopped by to say hi.  It was really lovely to see them and Gabriel was very excited to see them.  Little things like that are so good for his spirits.

My personal favorite part of today was watching Gabriel drive a little play car around.

Granted, he could barely fit into it, it was adorable watching him just “drive” around the halls for a while.  Being able to still be a little kid is so good for him and makes my heart smile.

Chet and I wish to express our extreme gratitude to all of you who are reading this.  Every one of you has offered your support, prayers, positive thoughts, and more to us.  We can’t tell you how much it means to us, how much it really helps just knowing that we have friends and family who care.  Every comment, text, email and Facebook message is enjoyed, even if we don’t always have the opportunity to respond individually.  It’s hard being here, but the outpouring of love and support makes it tolerable.  Thank you.  Please continue to pray for Gabriel, those prayers are felt and clearly working as his progress is even remarkable to the doctors treating him.

Many of you have asked if there is anything you can do to help.  If and when something comes up that we know you can assist us with, know that we will ask.

In the meantime, there is one thing you can do.  Donate blood and blood products.  Gabriel was the recipient of someones selfless act of whole blood donation and plasma donations.  Without the blood plasma he received the night we first got here, he would not have been well enough to undergo the testing to determine the type of leukemia he had and it would have been a longer and much more difficult road for us, and quite frankly, with much more dire outcomes.  Based upon first hand experience, the gift of blood does save lives.

And as we approach the New Year – remember to drive safely.

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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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In the spirit of Christmas, I’ve put together my own variation of the “12 Days of Christmas” Leukemia style.

On the twelfth day of Christmas my true love gave to me,

At least Twelve times peeing in a day;

Eleven neighbor kids; and

Ten different medications;

Nine times a day nagging to eat (at least);

Eight punctures to the body (so far) …

Seven hand washings an hour (at least) …

Six awesome nurses;

Five new fuzzy friends (so far)…

Four daily blood draws;

Three addictive video games (thus far)…

Two amazing doctors; and

One incredible child named Gabriel.

Humor is a wonderful antidote.  But, even better is Gabe’s smile and laughter.  I mentioned earlier that he was able to get out of his room today and spend some time in the playroom.  It’s hard for him, the area of the hospital we’re in is isolated with other kids with severely compromised immune system issues like him.  There are kids who have had transplants, other children with cancer, and other illnesses that I’m not aware of.

We spent some time in the playroom, and Gabe asked when the other kids were going to be there to play with him.  Oh, how that tugs my heart strings.  It’s so difficult for him to fully comprehend what he’s going though, and Chet and I have tried giving him the details in small doses.  I inadvertently said to someone on the phone today that we’d be here a month, and poor Gabriel’s eyes just welled up with tears as he cried out “a month!”  Ugh, I felt like dirt.  He already is getting it that he’s not going to be able to back to school right away.  And, I know that bothers him, but he hasn’t come out and said it.  I know he misses his friends, and that is absolutely killing me as I had started making arrangements for some play dates with his friends, friends from school and cub scout buddies before all this happened.

It tears me apart, all I want for him is to have normalcy in his life and be the little boy he is.  He is not the kind of kid that likes being cooped up inside, and right now we have no choice.  He’s already going stir crazy, and there’s not a whole lot I can do.

Things should improve on the emotional and psychological side after next week.  They’ll resume their school program here at the hospital.  I’m determined to maintain as much of our old routine as possible in the confines of the hospital.

Until then, Chet and I are working hard to keep things light and fun.  Laughter and humor are our friends.

Yes, that’s Gabe in his Cub Scout uniform shirt and hat today.

We had a special visitor today, but I’ll share more about that later.  Here’s the teaser, my little steroidal irritable boy apparently thinks I say “this is special” too much, at least at that moment.

Parting shot tonight before I try to catch a few minutes of sleep before I have to wake Gabriel for another “pee break.”

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