There’s No Place Like Home…

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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Merry Christmas

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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