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Posts Tagged ‘Going Home’

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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Where the cyclone roams.

We made it home.  Ironically, it’s weirdly bittersweet to be home.  Granted, I’m absolutely thrilled to be home, but also being home is so OVERWHELMING!

So, here’s my effort to bring everyone up to speed.

Friday we finally got discharged from the hospital around 12:30 pm.  We had rounds that morning and we got the report from the bone marrow draw the day before and …

Well, do you want to know …

really?

Well, the results were …

REMISSION!!!!!!

Yes, that was intentional use of not one, but SIX exclamation points!  We made it to remission in two chemotherapy treatments.  This is truly answered prayers, thank you for all the prayers and positive thoughts!  Gabriel went from effectively 100% leukemia cells in his bone marrow on the day we arrived to zero last week!

Gabriel was underwhelmed, but it definitely was a great note to leave the hospital on.  Further, we got news based on his blood draw that Friday that his platelet counts were rebounding on their own.  Such great news in really a short period of time.

We had a great drive home, stopped and picked up a big o’l box of supplies and made it home to witness the best thing ever – a HUGE hug between Rebeka and Gabriel.  Gabriel was simply focused on just going up to his sister and giving her a giant long hug.  Of course, I totally missed this photo opportunity.  But, you can just imagine the two of them holding one another, it was the most beautiful thing ever.

So, Gabriel spent the next hour or so just walking around the house, like it was the first time he’d ever seen it.  You could tell it just didn’t feel quite like home.

We had dinner with my parents – a special request by Gabriel.

Saturday, Katie, Becky and Chet’s brother-in-law, Shannon, made it to our house after picking Shannon up at SFO that morning.  It sure has been nice having family around.

We celebrated Christmas on Sunday, which was completely awesome.  The only possible thing that could have made it better is if Chet’s dad, Chip, had been here too.

It was an awesome Christmas full of our typical traditions – fresh cinnamon rolls for breakfast, mimosa’s, gift opening, sensory overloads, and more garbage than you can possibly shake a stick at.

Rebeka LOVED her Kitchen.

She was pushing her way into her kitchen and Lord help anyone or any package that got in her way.

Gabriel got his lasso, and makes a mighty fine cowboy, if I do say so myself.

P.S. Do you see that in the background there?  Look closely?  It’s black, automatic, and it’s not Chet.  Got it?  It’s a NEW DISHWASHER.  Yippee, we decided we needed to get a new dishwasher stat to have the ability to sanitize stuff really well with Gabriel.  The full kitchen remodel will have to wait until Gabriel has made it to maintenance with his chemotherapy treatment, but beside the new floor (which looks good, doesn’t it) he got the cabinet framed and dishwasher installed.  Sweet.

For Christmas dinner, I broke out the fine china as you can see.

Yes, the very exclusive and difficult to acquire rare china – Dixie.

After much food, family, and play, we were exhausted.  It was a wonderful Christmas, even if it was nearly three weeks late.

Gabriel has been doing well.  Poor guy is really suffering from the side effects of the Prednisone.  Fortunately, we’re on the countdown for that medication.  But, it’s really difficult because it’s starting to bother him, and my heart breaks for him.

He’s also starting to lose more hair, and that’s really hard.  He’s in denial about it, which is understandable for a little boy who absolutely loves his hair.  But, as a mom, it’s so difficult.  You want to be able to insulate him from the hard parts of all this, but it’s absolutely impossible.  And that just crushes me.

Today was a really rough day for me emotionally.  I think the past several weeks of positive enthusiastic attitude hit the wall.  I’m just feeling crushed in many ways about the overwhelming responsibility of all this.  At the hospital, it was a controlled environment.  There nurses and doctors were there to help us out.  There was a lot of peace and quiet in a weird hospital sort of peace and quite.  There was a certain calmness to being there.

While being home is wonderful, it’s so overwhelming.  There’s so many other things to be thinking about that we have to attend to.  There are now two kids trying to be the center of our attention.  All the realities of the responsibilities are right here in our faces.  Honestly, there have been many moments today where I would have preferred to find a dark closet to just go hide and cry.

But, this will pass.  The routine will become routine.  And all these feelings will be a memory.  We are so blessed to be surrounded by a loving supportive family and circle of friends near and far.  We are so blessed to have a kid who was diagnosed at a point where he could respond well to the treatment and has responded remarkably well.  We are blessed to have seen the results we have seen in really a short period of time.  We are blessed in ways beyond measure.

And, I think that is part of why this is difficult – things have gone so smoothly in so many ways, that it’s just hard to deal with the emotional toll and reality of it all when I can’t just ignore it.  I respond well to the crisis, but I don’t deal well with the let down.

We’re home, the new way of life is here and we’re beginning to establish a routine.  The emotional roller coaster isn’t about to end, but we’ll have some times of calm here soon.

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Yesterday was a lot of fun.  Gabriel and I just had a good time hanging out in the morning and then hanging out with Aunt Katie and Grandma Becky.  Grandma Becky is getting pretty good at playing the PS2 Lego Star Wars game.  And, Gabriel isn’t yelling instructions nearly as much.  Haha.

Gabriel has been having fun taking pictures of his Auntie.

Say “AAHHHHHHHHH.”

Later yesterday afternoon our friends Dave, Jen, Julia and Sam came by to see Gabriel on their way to Disneyland.  Gabriel was so excited to have two of his friends come and spend some time.

Like us, Dave and Jen don’t have a game station at home, so it was amusing to see Sam just sucked into the video game vortex.

But, we were able to tear Sam away from the game long enough to do some art. Gabriel and Julia had a great time making quilt squares.

Even Sam was there, though he was quite camera shy when he knew it was out in the Play Room.

But Gabriel and Julia had fun and didn’t mind posing for a picture with Jen.

After the artwork was done, it was back to video games for Sam and Gabriel.

It was a very nice day yesterday.

Today was a roller coaster of a day for both Gabriel and I.  While for the most part, it was a standard day, it also wasn’t.

Since Gabriel has to be completely put out for the bone marrow draws he can’t eat or drink after midnight.  Today, his procedure wasn’t scheduled until 12:20 pm.  That made for a pretty rough morning for a kid pumped full of Prednisone who was extremely hungry all morning long.   We tried sleeping in late, and that worked until about 8 am, but then he was awake and hungry.  I made a pact with him, I didn’t eat until he got to eat, and I was hungry and I’m not suffering from an artificially increase appetite due to medication.

Then at the out patient surgery it took forever to get him in for the procedure.  He managed to catch a nap while we waited, but it was hard.  Ironically though, he really started to get into better spirits there and was kidding around with me, which was just wonderful (and thanks some meds they gave him to ease the nausea he was having from the extreme hunger).

Once he was in for the procedure, things went pretty smoothly.  We’ll hear tomorrow morning where we’re at at this stage of the treatment.

This evening Gabriel had some good time hanging out with Aunt Katie and Grandma Becky while I made an escape with the intention of taking a shower at the hotel, but I made a stop to Title 9 first and one thing lead to another and after being gone for about an hour, I was feeling guilty and headed back to the hospital, because dang it, I just enjoy hanging out with my kid right now.  These are absolutely precious moments that I am cherishing.

After Grandma and Katie had left, Gabriel was spending a lot of time playing with his hair.  And, well, Chemo is starting to take its toll and the difficult discussion about hair loss began.  It’s hard because Gabriel LOVES his hair and it was rough on him, but he actually handled it better than I expected.  But, it’s still really rough. That was a major low point of today.

The good news is that we are getting to go home tomorrow.  I have a giant bag of medication to take home, we’ll be getting a big ‘ol package of blood collection supplies delivered to the house tomorrow, and well, we’re going to be home.  I’m thrilled.  God willing we won’t have many extended stays here at the hospital again.

So, for the last night from “5 South” I will say Good Night and I’ll update once we get home and settled in.

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The past several days have been strange for me as a parent going through this process.  I’m thrilled that Gabriel will be discharged and headed home soon.  Yet, it is a very intimidating and even somewhat frightening prospect.

Here at the hospital, it is a controlled environment.  The ward is sealed, people are vigilant about sanitation.  There is HEPA filtration.  If anything were to arise, there is a team of doctors and nurses waiting to provide assistance.

When we go home, that’s all gone.  Certainly we will have the ability to call about anything, but we’re home.  We can’t control everything.  And quite frankly, that is a bit unsettling.

Gabriel will do much better at home, I know that.  We’ll all be much better off with him home.  And, I’m thrilled, I’m just a bit scared.

I spent some time messing around and created this image for Gabriel’s journey.

The orange is the color for Leukemia awareness and purple is the color for the Childhood Leukemia Foundation, one of the organizations who has provided support to us here and one of the rubber bracelets Gabriel has been wearing.  Chet and I want to come up with a cool image to represent this journey for us, and this was my stab at it.  If there are any creative people out there who have some cool ideas, let us know and we can play with those.  Chet plans on brandishing our ultimate image during his 100 milers this year.  This is a journey, this is a war, and we’ll defeat the cancer and reach our destination – elimination.

Reflecting back on the past couple weeks, there have been trying moments.  But, truly Chet and I feel so grateful as we have been incredibly blessed.  As I’ve often said, of all the short straws we could have drawn, I’m good with this one.  We have been touched by so many people, both our family and friends who have come running to assist us, more than we ever could have expected, and we certainly don’t feel as though we deserve it.  We also have been touched by the caring and gracious hands of the people here at the hospital.  There has not been one negative person yet.  Seriously, from the nice man who picks up the garbage and cleans Gabriel’s room to numerous doctors and nurses who have been here walking with us every step of the way.

Chet and I know we have an incredible journey ahead of us and the past few weeks have really just been the beginning, but we feel ready to take on the challenge and do everything within our power to assure that Gabriel beats this thing.

Honestly, I’ve never felt more at ease and it is only through the grace of God that we’ve been given the resources to confront this head on.  It is through his grace and strength that Chet and I feel the way we do and as equipped to handle the road ahead.

It was a great day today.  I’ll provide lots of pictures and updates in the morning as Gabriel will be heading in for another bone marrow draw tomorrow and we’ll then have our last Chemo treatment here in “5 South” before we head home on Friday.  Stay tuned for further developments my friends, we love you and are so grateful for each and every one of you.

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We’re one day closer to going home.

Today was rather uneventful.  Chet and his dad took off for home to do the necessary repairs/updates before Gabriel arrives, which includes installing new flooring in the kitchen/dining room, painting Gabriel’s room and installing a dishwasher.  Gabriel and I just hung out with Grandma Becky and Aunt Katie today.

Gabriel’s feeling more tired these days, which is an expected side effect from both the level of Prednisone and once of the Chemo drugs that they have been giving him.  But, all in all it’s great.  One of the side effects of the Prednisone is getting a round face, which really started to be apparent on Gabriel today.  I think he looks beautiful and adorable.

Gabriel, after much persuasion spent some time with the teacher today, which was good.  He got a little school work done but spent a lot of time sharing with the teacher about all the things he loves.  This was good as it opened him up a bit.  He had a blast telling her all about his minerals and geodes.

All in all it was a great day.  But by far, my most favorite part of the day were two very special cards written for my by my little man.  In fact, this experience may be one of those moments that is looked upon later in life as one of the greatest.

The “envelope.”


Can I cry?  These little cards will be with me where ever I go.

So, things are moving along and this train is headed toward the bright light of Nevada sunshine at the end of the tunnel.  We continue to take one day at a time and just patiently wait for the ultimate discharge.  So, until then, we’re hitting the hay here in “5 South,”  well, Gabriel’s already asleep, and I’m going to start snoring loudly shortly.  Night all and thank you again for all the prayers, good thoughts, letters and goodies. Every envelope and package puts a GIANT smile on his face and we’ve been having fun keeping occupied.

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I left after work today to head back to Oakland. My friends, this is promising news – assuming nothing out of the ordinary happens between now and Friday, Gabriel will get to go home on Friday.

Chet and I are still taking one day at a time, but with the prospect of Gabriel being home by the weekend, we’ve got some work to be done at home. So, Chet and his dad are heading back to the house tomorrow morning to be manly men and do the work and I’ll hold down the fort hear in “5 South.” That also means more pictures (Chet’s not so good at taking them).

More tomorrow once I get some sleep and there’s more to discuss. Not that the prospect of being homeward bound isn’t exciting enough.

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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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