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Posts Tagged ‘sucks’

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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I got a C.S. Lewis quote via Twitter the other day,

God speaks into our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world – CSLewis

Well, yesterday I was being shouted at, and in my pain, I didn’t want to listen.  But, I’ve been afforded many opportunities to reflect and regain perspective in the last 24 hours.  When we were first facing this battle, I continually said out loud to family and friends that there is someone else out there having a worse day than us.  I lost that perspective yesterday.

We have it good, so very good.  I am humbled by the out pouring of love and support.  I am reminded, when reading the stories of other kids out there in the world who are facing much more difficult battles, that in the grand scheme of things, this is really a relatively small hill in our journey on this world.

I realize it is easy to become self absorbed and run the risk of a pity party when you’re at home.  At the hospital, we were surrounded by families who were facing much greater challenges.  We made friends with patients and their families who won’t be coming home any time soon, who have uncertain futures, who face months and months of hospital isolation and treatment.  I lost perspective.

Gabriel continues to do well at home.  He’s adjusting to being at home and the routine.

Mornings start out with a flush of his Broviac.

This is an illustration of his Broviac, except he has a single lumen (port) rather than the dual port.

So, Tuesday through Sunday, we flush the port with a saline solution.

This is followed by a dose of heparine.

Monday’s we do blood draws, which is the draw followed by the daily flush.

Then after the morning routine we have our drug administration time, which includes a dose of the Prednisone, Zantac, Calcium and depending on the day either an antibiotic or a dose of vitamin D. The drug routine is repeated at night.

This is repeated daily for the time being.  But, we’re on the countdown for the Prednisone, which is awesome.

Today has been a good day.  Gabriel got out and shot his bow and arrow and his Red Ryder BB gun.  Life is good, no, it is awesome.

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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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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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That is a way to sum up today.  Today, my world was completely flipped.  I sit here at two am, just praying that when I eventually fall asleep, when I wake this will all be a bad dream.  A very bad dream.  Sadly, it’s reality and I’m facing it head on.

Leukemia.

Wow, there it is in writing.  Man, how I wish I was saying I had leukemia, sadly, it’s not.  Gabe, our six year old son has been tentatively (pretty much certainly) diagnosed with Acute Lymphoblastic Leukemia.  It’s been a whirl wind day.

7:30 am, I made an appointment with the pediatrican for both kids since it appeared both had recurring ear infections and Gabe had super swollen lymph glands.  At 9 am this morning, I was whining about what seemed to be yet another ear infection and lamenting the thought of having to pay for two ear tube surgeries because it seemed our daughter had another ear infection too.  At 10:30, the doctor appointment started out routine and rapidly transformed to concerning.  By noon, blood had been drawn and I was seeing the writing on the wall and unable to focus at work on what had to be done while I waited for the call from the doctor.  3:40 pm, someone kicks me in my stomach and I’m told that my son has to be taken by ambulance to Oakland, CA for treatment for leukemia.

Yesterday, my kid was as healthy as a horse.  Today, I don’t know what to think as I sit in a hospital room with a child with two IV’s being pumped full of saline and platelets so that he can undergo testing tomorrow so that we can find out what the hell is going on.  Man, that was fast.

If you’re reading this, I ask one thing of you – please pray for my family.  Pray for Gabe to be healed.  Pray for Chet and I to be strong for him through this process. Pray for Rebeka who isn’t here with us, but with her loving Grandparents, to feel secure in what she’s got going on.

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