Me? Avoidance tactic? Never..........

Yeah. The last week or so has been kinda strange. Trying to prepare for our departure. Our prolonged departure. I've been avoiding posting. The things that come to mind are filled with demons. While there is hope, I've been so tired, lately, that the demons are ever present.

We had counts scheduled for this morning. Gregory had a couple coughs, yesterday. Wet coughs. One in the AM and a couple, last night. No biggie, right? Well, with no immune system, it changes lightening fast. This morning he was wheezing and coughing hard, as he was waking up. I knew, at that point, that we would not be coming home. I packed up all our bags and threw them in the car. I called down to the clinic, not knowing what the protocol was for "sick" kids in the clinic. Gregory is not into wearing a face mask, so we had the comfort of a room. Then the comfort of an admit. It seems like he gets worse late at night and early in the morning. Which I know is typical. He played well all day, with occasional coughs, froggy speech and small moments of catching his breath. Amazingly enough, his counts are still decent. Last Wednesday he was at 55 and today? 33. Still not to transfuse level. (platelets, that is) His hematocrit is holding, too. 30 today! That 6-MP is really doing it's job. I'm not sure if we will get home, tomorrow or not. He's had a couple coughing fits, since falling asleep. We will see.

I am grateful that we are not leaving for Seattle, on Tuesday. I'm afraid that they would have delayed our arrival, due to this respiratory thing. An extra week is more than welcome, for now. Oh yeah, Gregory is also getting nebulizer treatments, every six hours. His next one is due and 12:00 and while I know it would be a benefit for him, I'm kinda hoping that they don't have to wake him up for one.


Regarding the photo shoot. The pictures are so awesome. I've never had pictures like this before. They are the first professional pictures that actually capture the OffSpring as they are in daily life. Not stiff and posed. Perfection. Thank you, Lana. Moments captured, forever.

Here's the full set, if you are interested. It's huge! I haven't captioned or credited them, yet.


Thank you's for today:

To everyone who donated blood, is thinking about donating blood, joined the Bone Marrow Registry, is thinking about joining the Bone Marrow Registry: You are heroes. You are saving lives. You are bringing hope to families. Just like us.

Marlene!!!!! This thank you is delayed. I NEED the recipe for that soup. It was the best "Mexican" soup I have had. (Well, except for Azteca's Seafood Stew. Wait, that's a stew. Never mind.) Not that I will be fixing it anytime soon, but it was so yummy. I would like to have it for future use. Great recipe.

To all of you who keep commenting and offering encouragement and support. This is a group effort. All of your positive energy and thoughts are pulling us through. Will pull us through. The tough stuff is still ahead. Please don't quit. Even if it's a thought in passing. It counts. So do you. ♥

Thank you, in general to ALL musicians & writers. I cannot imagine my life without music & books. My life moments are marked by lyrics, melodies and passages. These things are priceless to me.

*If you don't know about Pandora you really should check it out.  It is simply divine.  Also?  iphones & BlackBerry's have apps.  Love it!*

Be The Match MarrowThon

Al right folks.  For anyone who feels compelled to join the Bone Marrow Donor Registry and cannot make it to a blood center to get it done:

From June 8 - June 22, 2009 there is a Be The Match MarrowThon
It is ONLINE!
Simply go to   www.marrow.org
Click the JOIN button, follow the prompts
Enter Promo Code:  BTMM499

This is a FREE event.  No fees to YOU. 

What could be easier?  Talk about good karma points!

ETAL:      Yes, the promo code WILL NOT work until June 8 - June 22. 

Rob! Do you have a direct link to me & mine?

Myself:

VIRGO (Aug. 23-Sept. 22): The coming weeks would be an excellent time
to devote extra care and attention to your home-away-from-home -- you
know, the place that's second-best at making you feel like you truly
belong here on this earth. Enhance the ambiance in this alternate power
spot, Virgo. Add beauty to the decor. Let the people who hang out there
know how much they mean to you. And if you don't yet have such a
sanctuary, then I suggest you hunt one down. You need to experience
more of the pleasurable stimulation that comes from going back and forth
between two different comfort zones.

Gregory:

CANCER (June 21-July 22): If His Holiness the Dalai Lama (like you, born
under the sign of the Crab) had a Twitter account, I bet that this week
he'd tweet something like this: "Nothing's permanent and we should
never be attached to anything, but wow! -- the goodness rising up now
may send ripples through eternity!" What he'd mean is that while reality is
always in continual flux, and it's wise not to cling obsessively to either its
pleasures or sadnesses, the powerfully healing mojo that's moving
through Cancerians' lives these days could have long-term positive
consequences.


Free Will Astrology!

Thanks, Lana!!!!!!

This is a PREVIEW!!!!!!!!!!!!!!!! Lana, rawks!!!
Thanks to: Priceless Photography by Lana & Littlest Heroes Project!!

A Small, Anticipated, Delay

As expected, a small delay.  The donor is not available for "harvest" until June 10.  Therefore, we are delayed by one week, too.  We are now leaving Monday, May 11.  Which kicks everything forward by one week.  No big deal, really.  As long as we are able to still have the same donor, I'm so totally "OK with that".

Miley, Miley, Miley................

The last few days have been FULL!  Trying to remember everything I need to take/do before Tuesday, May 5.  SEVEN DAYS!  Incredible.

Yesterday AnnMarie & I had a girly day.  Pedicures, shopping and Hannah Montana: The Movie.  The movies was actually pretty good.  I bawled through a good portion of it.  Thankfully the theater seats today can be love seats.  We sat curled around each other.  Singing, grooving and me bawling.  It's hard to imagine that the earliest that I will be home is September.  Next weekend, Curtis and I will have a day together.  Not quite sure what we are doing, yet. 

I'm thankful that summer is when we will be in Seattle.  Seattle summers are about the prettiest, ever.  Very little rain, sparkling sunshine and moderate temperatures.  I'm also grateful that Gregory won't be couped up inside during a Spokane summer.  At least not this year. 

Still no word on what our medical schedule looks like, for this week.  Not having some kind of schedule drives me a little batty.  Hopefully we will have some answers by the end of today. 

Did you know I am a hipster?  Yes.  I broke down and picked up a hip holster for my phone.  It is so much easier than trying keep constant tabs on it and running to find it, whenever it begins ringing.  It will also work out great for Seattle.  It is the time of year where pockets become scarce.  So, yeah.  Once more the geek strikes and I'm becoming THAT parent.  Which is totally OK, 'cause the convenience is awesome. 

I need to get more laundry done and get ready for pictures, later today.  Gotta jet!

Short, boring, My mind is too crowded.

Hi folks!  It's another quiet Saturday.  Gregory is trying to stay asleep, Curtis & AnnMarie are with Nana and Larry is out-and-about. 

It's been a very draining, last few days.  Trying to remember all the arrangements that need to be made, getting them done and thinking about what we need.  WE LEAVE IN 10 DAYS!  Just as Dr Reynolds suggested, we will be in Seattle in May.  Wild.  I'd like to believe that he can manifest, too. 

I'm beginning to see that we WILL be OK.  I'm beginning to see that Gregory will come out on the side of light.  I've prepared, the best I can, for this Odyssey.  Thankfully I've had several weeks to research and get to know this treatment.  Most leukemia patients get thrown into the mix immediately upon diagnosis.  I've had a chance to live with it for a while, before actually going through it.  While the waiting was REALLY  hard, it was significantly shorter than it felt like.

We may/may not be able to get his central line changed, next week.  Surgeon availibility, I believe, is the issue.  *shrug*  It will happen, when it happens.  We have our first family photos on Monday.  I'm awfully excited about that. 

I don't have much else to report and really don't feel like getting all "deep" this morning.  I'm going to leave it at that, for now. 

Thanks for this morning:

Anne & Cassie/Cassie & Anne ~  Holy cow!  Thanks, yadies!  Each item gift wrapped was perfect.  The game set for Gregory!  Awesome to take with us.  Love you, both!!! 

Kenneth ~ Wow.  You are amazing in your generosity and your heart.  Thank you!

Our anonymous donor ~ You rock, girl.  I hope we get to meet, someday.  A life saving gift.  There are not enough words to thank you with.

So tired, yet sleep is not in sight.

Thank you, thank you, thank you, to everyone who has passed on cheers & tears. It's been a very surreal 24 hours. Yes, Jess, I think I was the only one with an ear-to-ear grin at clinic. *snicker*

Counts today. Wouldn't you know it? Platelets were at 51!!!!! Hematocrit is 29 and White count is at 9! The low dose, oral chemo is working. This is the longest that he has held on to platelets. Gregory also continues to be happy and unaffected. Dr Reynolds also filled us in on why a single lumen Hickman was placed. I guess the tubing on a double lumen is super thin (in circumference). Therefore they don't last as long. Not knowing how long it was going to be before we went for transplant, the smart thing to do was have a single placed, until we neede the use of a double. Which is now. Also, instead of waiting until we get to Seattle to replace his Hickman, we are going to have it placed, next week. which I'm soooper grateful for. He will have some time to heal, before chemo and transplant. The surgery is not yet scheduled, but I expect to get a call tomorrow. He will receive platelets before this procedure.

I have requested a room at the Ronald McDonald house, for the threeish weeks, prior to chemo/transplant. We are on the wait list at both the Ronald McDonald house and the Pete Gross apartments, for our out-patient stay.

I have more to get out. Stuff having to do with my relationship/interactions with Curtis and AnnMarie. It's been rough. I can't articulate it, right now. Mostly because it kills me that it's happening and I have no control over it. Really, I don't. There is just nothing left to give them. It's painful and so flippin' challenging. I'm also nervous about what I will come home to. I think this is something I really need to get straight, while I'm in Seattle. I'm hoping they have good support for this topic. I'm also grateful that a good portion of this will occur during summer break. While it will be significanly more challenging for mom and Larry, it will be less stressful for Curtis and AnnMarie.

My brain is absolutely fried. I need to veg out for a little before crashing. Work tomorrow, Friday-Morning-Therapy. That's as far as I'm going. I do need to start making my lists. Checking them twice. Departure is right around the corner. This is what equal amounts of excitement & fear looks like. It feels alot like shock. We shall prevail, but that doesn't mean will be not be scathed. "What doesn't kill you makes you blah-blah-blah." Bullshit. While I do feel stronger in some respects, I'm also incredibly weaker, in others. I'm having a hard time saying what I want to, tonight. I think I'll sign off and get some rest.

Love & peace to you all. ♥

I'm not above self promotion. If you haven't noticed.

KXLY is running an update to Gregory's story, tonight.  Just thought I'd let you all know.

I'll be back, later tonight, with an update.  The OffSpring are home and we are approaching the witching hour.......

The Phone Rang & I Answered It.

Yep.  I love seeing the 206 on caller ID.  We got THE call.

We have a perfect match.  What?, you say.  Yes.  WE HAVE A PERFECT MATCH.  The only thing remaining is a physical exam for the donor.  In order to proceed, they set our schedule, then the donor gets checked out.  We are so flippin' close.

The donor:  What we know so far, it so totally enough, for now.

• 10/10 Match
• B Positive Blood Type
• CMV Negative
• Female
• 22
• Located in the US of A

Check this out, if for some reason she doesn't work out, WE HAVE A BACK-UP.  Amazing.

Here is our tentative schedule:

Tuesday May 5 (two flippin' weeks, folks!), leave for Seattle and get settled in our own accomodations.
Wednesday May 6, officially register with facility and get friendly with the grounds.
Thursday May 7, meed the Doc.
Friday May 8, Tests, tests, tests.  Another BMA, X-Rays, Echo, a-bunch-of-other-shit-I-can't-remember-r

ight-now.

Wait for results, May 18, the medical group gets together and discusses Gregory's case, current health and plan of action.  I guess you could call this "rubber stamp" time. 

Here's the worst part of all.  Gregory has a single lumen Hickman Catheter.  He needs a double lumen.  So May 22 he gets to have his line removed and replaced with a double lumen.  Ugh!!!

No splenectomy.  No total body irradiation.

Chemo begins May 24.
Busulfan IV 4x/day for 4 days
Cytoxin IV 2 days
Melphalin IV 1 day
One day of rest. 

TRANSPLANT, JUNE 1.

3 weeks, inpatient
2 1/2 months out patient.

All of these dates are fluid.  This simply gets the ball rolling and gives us a target.  These dates are also assuming that we have zero complications.  Nothing is set in stone.

The greatest part about our donor?  Aside from the PERFECT match.  She's in the US and a repeat transplant will be easier.

Things for me to remember:  Ask Dr R for slides from April 17 BMA.  Ask for his chest x-rays.  Take these items to Seattle.

I can't believe I just typed all that.  I can't believe that our life changed again, today at 3:13pm.  I feel so wired, nervous, anxious, scared.  My stomach has been doing flip-flops, non-stop.  I can't seem to settle on anything.  I'm pacing around the house with this stunned expression on my face.  I feel like I'm in shock.  I haven't reached that "Woo Hoo!" stage.  'Cause it's not 100%.  It's all hinging on the donor.  Will she be healthy?  Will her schedule allow?  I try not to count my chickens before they hatch.  I do not want to be let down if this doesn't work out, but......  WE HAVE A MATCH.  We have a schedule.  We are on our way.

PLEASE!  If you are planning on donating blood or signing up for the Bone Marrow Registry, PLEASE still do so.  My purpose behind this event was for the benefit of the greater good.  We will need blood products, too.  Still.  Wouldn't it be awesome if one of you were a perfect match for another family?  *steps off soap box*

I'm exhausted, yet totally keyed up. 

Thanks for tonight are simple.

Thank you Universe.  With all that this implies.  Thank you.

AnnMarie & Mommy ~ Self Portrait!

AnnMarie & Mommy ~ Self Portrait!
Originally uploaded by mindithemagnificent

AnnMarie and I had a few moments, today. It's been really tough on her. I can't gauge Curtis. AnnMarie is an open book. I've been trying to be tuned in better with her, but it's really hard. I'm afraid that if my back is turned, Gregory will spiral. As if my vigilance will protect him. Meanwhile, I have two other OffSpring who still desperately need me. More so, if I'm honest. Trying to remember to take moments with them and then remember them. It's all I've got, for now. I can't plan anything with them. That's the worst part. I cannot give them any kind of realistic expectations. Only to expect the unexpected. Curtis likes to know what's coming and I have no idea how this is affecting him. We are trying to keep them both on some kind of routine, except the current "routine" doesn't include me, too often. *shrug* Time will tell. I'm trying to be aware. Not succeeding very well at following through. Wow, I kinda digressed. A simple photo post/turned mental puking. I need to do this more.

Notes from the Universe

You're freakin' me out, Mindi. I can't remember when you last looked so radiant. When your inner beauty shone so bright. When your step was so light and your smile so heavenly. And it's Monday! What's gotten into you?!

Does this have anything to do with recalling your divinity? Have you realized that time truly is on your side, and that more than enough of it remains for us to do your greatest work? Is it that you now see how much you already have, how many you've already helped, and how much you've already done?

Ahhhh! Your eyes just did that sparkly thing! Moonbeams just shot from your fingertips! The aroma, all around you, is like lavender! And your angels are locked wing to wing singing, "Weeeeeeeeee are the champions..."
...Okay, okay. So I'm pulling your leg a little bit. Truth be told, I can't remember when you didn't look like this.
All together now...
    The Universe
Don't you LOVE "Queen," Mindi?


This one is SO good.  "moonbeams"  I'd like to think they are healing energy. 

April 20, 2009

Hi guys! I'd like to welcome the Jefferson Elementary Community. The flyer went home today, for the Blood/Marrow drive. There was mention of our situation in the school newsletter. This is not a one way conversation. If any of you have questions or comments, let me know. Nothing is sacred.

Today was another good day. I need to relish them. We don't have counts again, until Wednesday. I'd bet you money that they will be single digits. We should also have the results from his Bone Marrow Aspiration. I'm curious to discuss it under less stressful terms. The last one was nearly eight weeks ago and was for diagnosis. They also ran more genetics. Don't know what for, yet. Some earlier genetics testing revealed that he does have a marker for Noonan Syndrome. I'm not exactly sure what this means for Gregory, except there is a high rate of Noonan Syndrome and JMML. Gregory is such a rare case, that I think they are culling all the information they can. I just hope that it provides answers for later on down the line. 'Cause all childhood cancer needs to be learned from and advances made. I officially recieved my consent to "join" Gregory's case and the Children's Oncology Group.  In a nutshell, they research childhood cancer and use actual patient data.  Of course we will consent.  There's no doubt about that. 

I want to wish Ellie, Parker, Elliot, Ana, Aria and the rest of the warriors, peace, rest and play.  You are all at different stages, experiencing challenges and triumphs.  (Weight gain, Yay!)  I think of you all several times a day.  *fierce squeeze*, to you all.

Seeking advice:  Gregory has really been into dancing, mimiciking dance and singing.  I want to encourage this.  We have The Laurie Berkner Band.  I love it.  Not too childish, at least not in that baby-nursery-rhyme way.  I'm interested in video and music.  I know there are some hip folks, out there.  I think the Bare Naked Ladies did something.  Yes?  Any suggestions?

Later tater's.  Gotta jet. 

Todays thank you's:

Paula Gibson-Smith, Sharon Bowman, Gayle Waner, Claudia Start & Linda Bradley.  You five women are amazing.  As much as Montessori moves me, I do not have what it takes to do what you do.  Every day.  Every week.  Every month.  Every year.  You continue to inspire and move me.  I think of you now, because this is when it gets crazy, again.  Thinking about Camp Out and all that means.  Thanks, ladies.  We are all honored to have you in our lives. 

This is not a thank you, but a belated wish.  I completely spaced my parents wedding anniversary, last week.  I didn't even remember it late.  It was totally off my radar.  The big deal about this?  I may not outwardly acknowledge events like this, but I NEVER forget.  EVER.  So, Mom & Dad.  Happy Anniversary.  Who woulda thunk it?

Miss Marlene, we are doing OK.  Thanks for the offer.  I'll get back to Unity, on occasion.  It just takes alot out of me.  Thanks for being there. 

April 19, 2009

It's been a good, last few days.  Gregory has been in a good mood, eating well and sleeping well, too.  I'm not sure when our next counts are.  We will find out in the AM. 

To be honest, my mood has not been the best.  Waiting, waiting, waiting.  Not the best place to be.  I hope to have more "hope", once we have a match and can move forward.  Once again, limbo sucks.

Today was Spokane's Race For the Cure and I'm so incredibly proud of everyone who participated.  Mom took AnnMarie and I  to Costco (Thanks, Mom!!!!!!!!!), while we were there I noticed a ton of Race shirts.  It was really cool.  I stopped one woman and asked her if she ran, she said she did and I started to get teary.  She is a three year survivor.  Cancer has never really been a part of my life.  My grandfather died from Prostate Cancer, except he was 82 years old.  Experiencing it from the view point of: You've got alot of life, still, ahead of you.  Is different. 

Curtis and AnnMarie both have some respiratory stuff going on.  I'm hoping it will be short lived and Gregory won't be affected.  We have our first family pictures next Monday.  I'm awfully excited about that.

On a lighter note:  I have given DPN's an honest try.  I decided to use them for the sleeves on AnnMarie's sweater.  Guess what?  It's quicker than Magic Loop.  Notice I didn't say easier.  I'm not there, yet.  Magic loop is great.  I'm glad I tried it before DPN's.  Yet, DPN's are certainly quicker.  Could socks be on the horizon?

In case anyone is interested I am on Ravelry.  MagnificentMndi

Not much else to report.  At least that isn't terribly depressing.  It's not as bad as it sounds, I just need somewhere to put this stuff.

More later.  Gotta jet.

I have no idea how to title this..... can't brain.

You don't realize how stressed out you are, until the item stressing you out has come and gone.

Gregory's Bone Marrow Aspiration, went really well, today.  They had an opening an hour before our scheduled time, so we got to get in there a little bit earlier.  The procedure was done in a big room with three procedure stations.  Ours was first.  It was weird to see him on the bed and go through the prep motions, like it was not big deal.  This was his fourth sedation and he knew what to expect.  His first one was the initial aspiration and, quite frankly, that whole day is an absolute blur.  He took every step in stride.  They even allowed family to stay at their bedside for the entire procedure.  Which was kinda weird, too.  I knew what to expect so it didn't get to me like the first one did.  Thankfully they were also able to take out the sutures around his central line and change his dressing.  All while under sedation.  YAY!!!  Gregory was a little off kilter though, 'cause they used a different dressing. 

Dr Reynold's ordered additional labs and bone marrow testing.  Not quite sure what he is after, yet he will fill me in, when the time comes.  Our  coordinator, Jennifer, was not there today.  It's kinda weird that since she wasn't there, I felt a kind of "alone" feeling.  Not that the other coordinators are not as competent, it's just that I have developed this sense of "we are a team, we are in this together" with her and Dr R and it feels like our team is not complete. 

It's probably a coping mechanism.  My brain is finding creative ways to deal with all this. 

Don't get me wrong, I am not saying she needs to be with us ALL  THE  TIME.  I just noticed an empty spot today and recognized it for what it was.

Today I also went to visit our old Montessori Pre-School.  Walking in there was really bitter/sweet.  It felt like home and reminded me of that time when Curtis and AnnMarie were pre-schoolers.  What a precious time.  It was also sad, because that is where Gregory should be this fall and he may miss out on it all together.  Time will tell.  The school looked beautiful, though.  The language/math & practical life area has received hard wood flooring with throw rugs and it looks so pretty.

Friday-Morning-Coffe-Therapy was just Lisa and I, with her twins.  It was really great.  There is something about Lisa.  Her ability to "get it" amazes me.  Her humor is also, the best.  I love you, girl.

For the rest of the day and tonight, I'm hoping we can just chill.  Maybe take a little nap.  I'm seriously contemplating taking some of my Melatonin tonight and trying to get at least 8 SOLID hours of sleep.  My body is telling me that I need it.  This sustained state of........ whateveryouwanttocallit, is getting to all of us.  I would really like to find a way to ctrl-alt-delete all of us.  Reboot our systems.  Can you defragment a human?  Realign our files?  I'm gonna try. 

AnnMarie and I are probably going to try and catch the new Hannah Montana movie, this weekend.  She and I NEED some time. 

Alrite.  We are going to hunker down.  Wall*e is on the player.  Gotta jet.  Love to you all. 

Jefferson Elementary ~ YOU rock!

So. The KXLY piece aired today. Here it is!  They did a really nice job. 

One thing I would like to clarify.  Jefferson Elementary is hosting the drive.  The staff/teachers & families have worked to make this happen.  We have received such a tremendous outpouring of support from our school.  It's amazing the kind of relationships that can occur through your OffSpring's education.  This is our fourth of thirteen years with Jefferson.  Provided Gregory is able to remain on "schedule" with his education.  That is, obviously, yet to be realized. 

Due to all this, Gregory will not be able to start pre-school this fall.  Our OffSpring are all Montessori educated.  We are fortunate enough to be in the Spokane Public Schools Montessori Program.  With Montessori, it is broken into three year, "segments".  Gregory would have been starting his first hear of three, prior to the first grade.  Since he won't be going, I've decided to try my best at showing him what he needs at home and during our stay in Seattle.  Which means we need Montessori education materials.  The community has been awesome.

The week of the blood/marrow drive will be designated as "Gregory Bibb" week.  The students have banded together and are raising funds for Gregory's "Education Fund".  They are helping us to get him the materials he needs, in order to stay on an educational "track".  It's pretty exciting and moving to see everyone do this.  The students have made these absolutely beautiful PinWheels.  They are planning on offering them in exchange for donations to Gregory's Education Fund. 

I am daily reminded of the power of the collective spirit.  We are in no way in this alone.  We are all experiencing this together.  Thanks for journeying with us.  

Thoughts that make you go hmmmmmmmm.............

I've been meaning to post this, so here it is:

"Truly cured children are not just biologically cured, free of disease, but developmentally on a par with their peers and at ease with their experience of having had cancer."

~ Dr Jan van Eys
As quoted in Childhood Leukemia ~ by Nancy Keene


I couldn't agree more.  This is truly the goal.

Being proactive is my friend. Truly.

Man, I tell you, I am not a fan of surprises.

We had counts today and KXLY tagged along. I have no idea how it's going to turn out. I have no idea what the ultimate "take home" message is going to be. MY message? Support your community, donate blood & get on the bone marrow registry. 

While we were waiting for results, our coordinator let us know that TOMORROW we are going to have (I say WE, like I'm going through it, too.  Ugh!) another bone marrow biopsy.  The purpose?  Dr Reynolds wants to monitor Gregory's blast count and find out if we need to do any maintenance.  Be proactive about getting ready for Seattle.  It would really suck if we had some work to do, before we could start chemo and get to Seattle.  It would delay the transplant.  THANK  YOU Dr Reynolds for being proactive!!!!

Today's numbers:  Platelets~ 96, White blood cells ~ 9.6!, Red blood cells ~ 3.74, Hematocrit ~ 28.1

Hopefully, he won't chew through too many platelets between now and his biopsy.  I don't know if they consider this evasive enough to worry about low counts.  They would not place his central line with his platelets below 75. 

They already have five bone marrow biopsy's on the schedule.  Ours will make six.  (YES!  I can has MATH skillz!)  They only are allowed THREE!!!   So, they need to do some creative scheduling.  They will be calling us with an appointment time and of course, NPO times.  This procedure includes sedation, so he will need to not eat/drink after a certain time.  I don't remember much about his last biopsy, imagine that, but apparantly the sedation burned and he experienced some pain.  Larry remembered this.  Larry is thinking that since he has a central line, now, that he will feel it less.  Me, too.

Friday is a big day for Larry, I'll probably need my mom to take care of the bigger OffSpring, so I'll be going it alone.  Which is totally OK with me.  I have this habit of feeling the need to "entertain" whoever is with me.  Unless it's Larry.  Make sure they have what they need, make sure they are ok.........  Old habits are hard to break.  The good part is that I will, hopefully, get quite a bit done on AnnMarie's sweater.  The pocket is finished, I'm working on getting the body to match in length, then fusing the two together.  That's the fun part, seeing it all come together. 

I'm beginning to create my "cancer" village and it feels GREAT!!!!!!!!!!  The most recent habitant is incredible.  Due to our recent conversation, I've been able to shake some of the glum I've been feeling.  I have this really strange feeling about "hope".  There is no action in this word.  It's a feeling that you "give it up and let it go" kinda thing.  I believe in manifestation, but how do you manifest something so comepletly beyond one's scope of experience and knowledge.  Also, the recipient is not me.  Can one manifiest for others?  Meanwihile, in order to cope, I have this "It is what it is" attitude.  Hope/pragmatism/facts/manifiestation     Will they all come together and will we have a "healed" outcome?  Who knows.  All I DO know, is there is a ton of positive energy surrounding this little man and our family.  No matter what, we will prevail.  I just need to remember to enjoy the Odyssey, along the way.  I was driving to the J-O-B the other day and got to thinking that these years will be remembered as "The Lost Years".  Upon further thought, that is totally NOT how I want to remember them.  We still have much to experience and enjoy.  I just need to constantly remind myself of this.

Gregory and I are going to hang out for a bit, now.  Gotta jet!

Mr DeMille, I'm ready.......

OK, guys.  I believe in raising awareness.  Right?  So why do I feel narcissistic?  'Cause KXLY is meeting us at our appointment tomorrow.  It's a blood count appointment.  Dr Reynolds has agreed to talk to them, too.  They are bring a film crew.  Are we ready for our close up? 

I don't know where this will go.  I don't know if it will be a simple spot or a "continuing story".  Talk about 15 minutes of fame. 

Hear ye, hear ye!

Hear ye, hear ye!
Originally uploaded by mindithemagnificent

For the benefit (of mr kite)of the greater cosmic good.

Man, I needed that.

What a weird day.  Gregory and I headed to clinic around 9:30 this morning.  They were, of course, crazy busy.  So we went to the playroom to wait.  Gregory sat in my lap and cuddled while we waited.  Dr Reynolds was just kinda hanging out, talking to patients.  We were not on today's schedule, so he did not know we were coming in.  He noticed us and asked how we were doing.  I told him and he immediately took us back for an exam.  He took one look at Gregory and predicted that his Platelets would be at 8 and his hematocrit would be at 23.  He ordered platelets and red blood cells without blood counts.  They got going on the order, drew his blood and we took off to run a few errands.  About an hour later I get a phone call from the office:  (paraphrasing)  "No red cells today.  Gregory's hematocrit is 30."  What?  Really?  Also, his platelets?  They were at 28.  We don't transfuse until he hits 20.  We did get platelets, though.  I feel good about that.  What's even better, is that we are back on twice weekly blood counts.  I tell you, his demeanor and the petechia had BOTH of us fooled.  It still makes me think that SOMETHING is going on.  Dr R also order blood cultures.  As the day progressed, Gregory's petechia around his right eye turned into a really nasty shiner.  The thing is, that I have been vigilant with Gregory.  There has been NO rough housing.  Everyone has been kept on sooper-dooper-be-careful-with-your-little-brother alert.  This black eye has me concerned.


One of the hardest things, lately, has been going to clinic and talking to other families.  Don't get me wrong.  I LOVE to meet new people.  I believe in my heart of hearts in community and the power of the collected voice.  It's weird, though, being on the receiving end of sympathy.  These families don't know about JMML, but they DO  know about Bone Marrow Transplants and all that is entailed.  When I meet people, tell them our story, when I get to the BMT part, it's kinda weird.  'Cause THESE families KNOW what chemo looks like, feels like.  They know that they are the "lucky" ones.  Which is not to say I am jealous.  Not even in the least bit.  I'm trying to express how your perspective can shift.  How in conversations I'll say things like "With "normal" leukemia".  Whoa, right?  What the hell is "normal" about leukemia, to begin with!  I'm not articulating this very well and I know I have folks with "normal" leukemia reading.  Know this:  your fight is no less than ours.  At all.  Ever.  It is different.  I've also come to learn that EVERY fight is different.  Even if you have the same diagnosis and circumstances.  No two patients are the same.

The only thing we universally have in common, is this:  Our children have Cancer.  It sucks, it bites, it has to be the worst thing ever.  Yet........  we have each other and those that have thankfully, gone before us.  We have the collective energy of every single child and family who have been/are going through this.    I offer my thanks to the families that I have learned from.  The families that I have observed, read about, conversed with.  You are all amazing warriors.  I feel so honored to have met you.  You give me strength, without even knowing it.  'Cause we are all just regular "joe's" (insert election humor here), trying to conquer the unfathomable.  It's a club I've NEVER wanted or even thought about becoming a part of.  Except we are and I'm grateful for all of you.  Especially the ones I've met recently, face-to-face. 

We are warriors.  Hear us ROAR!

Can I trust my gut???

This weekend was tough.  Not having blood counts on Thursday/Friday was a little nerve wracking. 

Curtis and AnnMarie stayed Friday night with Nana (thank you!) and this Saturday I made a conscious choice to not get the blues.  With just Gregory and I on Saturday mornings, I have a tendency to get a little glum.  Not this weekend.  Sometimes choice works, and sometimes it doesn't.  Saturday night I snuck out for a few hours with a close friend and it was such a relief. 

Gregory's behavior has been deteriorating all weekend.  Crabby, tired, needy.  Progressively worse.  Saturday night, while I was out, he had to use the bathroom and got very upset.  He's used to me being around and was probably a little upset.  This morning he had petechia all over the eye area of his face.  Which is not abnormal, for him.  Just the volume of it.  Combined with the behavior, I'm not waiting until Tuesday for counts.  I called today and left a message to get in tomorrow.  He also had not been eating much. 

I've never been a "listen to your gut' kind of girl.  Facts and figures, please.  When it comes to the OffSpring and their health, it's a crap shoot.  Either it's a needless trip to the doc or it's more severe than I gave it credit.  Ugh!  I wish I had developed my "gut listening" techniques!  Crash course is currently in session.



This is not a good picture.  I was trying to capture the petechia and didn't do very good.  Last night, Gregory was playing in AnnMarie's room and had her cloche' on his head.  He is getting paler and had that hat on, also his eyes are tired looking and baggy.  He looked so much like your stereo typical "cancer  kid".  It was one of those moments that just takes your breath away.

I've been trying to get lots done on AnnMarie's sweater.  My goal is to finish it before we head to Seattle.  I don't know if the weather will be cool enough for her to wear it, but I want to leave her with something.  She is very attached to items that I've knit for her.  This picture does not do the yarn justice, but I've got the bottom half done and most of the pocket.  Once the pocket is fused, it really does fly off the needles.



Not much to report, for now.  Just more of the same.  Feeling a little clogged up, honestly.  It will shake loose.  I have a ton more to get out, but it's just not readily available.  I'm worried about Gregory's counts.  Gotta jet. 

Got Facial Tissues?

"But words are things, a small drop of ink, falling like dew upon a thought, produces that which makes thousands, perhaps millions THINK."
~Lord Byron

Curtis is home today. He has an occasional habit of staying up and waking early, which means very few hours of sleep. I'm not sure how many he had last night, but if he doesn't get a full 10 hours a night, it's hell the next morning. This morning was no different. After much yelling and cajoling, he remained home. Which is turning out OK. I realize that he should not be rewarded and have "fun", because he chose not to sleep and got to stay home. Except these are unusual circumstances, we are currently living under.

Mom came over this morning and I was able to get to Friday-Morning-Therapy for a little bit. When I returned she pointed out that Gregory had quite a bit of petechiae on his left wrist. Usually he get it when I remove adhesive tape. He also had a haircut a while ago and it caused his neck to itch, his scratching caused petechiae. It kind of freaked me out a little. We are going a full week between blood counts and I'm a little anxious about it. I'm keeping my eyes peeled for signs of low platelets. Of which, this is one. I was supposed to change his central line dressing, yesterday. I worked yesterday and we were all home. I did not want to change his dressing with the usual "witching hour" stuff. So when I got home from coffee, I bathed him and changed his dressing. I'm keeping my eyes out for signs. He seems to be doing ok. There has not been a significant amount of petechiae with his dressing change. Time will tell. Thanks the powers that be for the peds onc unit. If he should need anything this weekend, they are always available. As is Dr R. I have no idea what Dr R's life must be like. Always at the beck and call of families in crisis. He handles it with such grace and humor. I have such a deep respect and love for everyone involved with our care.

This whole match thing. Now that we have the possibility for a match, it's brought on all new emotions. Honestly? Fear is the biggest one. At least for now, Gregory is "normal". The beggining of "treatment' brings a whole new reality. I keep getting these moments of imagining what diffents things will look like. Driving home from coffee I had this vision of a car trip to Seattle with a very sick little boy, racing towards a treatment that will save his life and complications that could end it. There are moments when I wish we could just transfuse him for the rest of his life and call it good. Also, the reality of being away from home is scary. I know I have friends and family over there. Yet, they are not my friends and family, from home. I am going to have to lean on people who I have not been actively involved with for quite a few years. When family does come to Seattle, I'm going to need to learn how to balance spending time with them and finding a way to get away, too. While being confident that Gregory will be OK during my brief absence. There are just so many things. I try not to dwell on them. I really do. It's just that I find myself overcome with "stuff", out of the blue. Almost like the feeling of a panic attack. They never last long, but they are powerful. They come on at times when I'm doing something mundane and routine. Driving down the road, doing dishes, folding laundry. Thankfully, my knitting has never brought on these moments. Knitting is someplace I can go and just be. I can't tell you how grateful I am for finding the magic of sticks and string.

On another completely different note: I'm finally getting a chance to read stuff I've always wanted to read. I've never read Jane Austen and it's been on my "to do" list for some time. Betsy lent me her copies to read. I'm so very excited to read them. I've been trying to think of things to read that will keep me challenged, yet be somewhat light and enjoyable in their story line. I'd also like to read more of the classics. I read quite a few, several years back. I would love some suggestions. Here's a disclaimer, though. I read a bunch of Steinbeck. While I absolutely LOVE Stenbeck, I cannot ready anything tragic. I'd also like to read some Oscar Wilde, I think I would really enjoy it. So. If you wouldn't mind, I'd love suggestions. I also need to get Jen Lancaster's sequals to "Bitter is the New Black". LOVED that book.

It is amazing what has come into our lives. I've always wanted to have family pictures done. We have never had a family portrait taken. While I'm not a fan of formal "professional" photos, I have always wanted some casual pictures of all five of us. These is a fantastic organization called, The Littlest Heros Project. Photographers from around the world, sign up to help families capture moments in their lives. With Spokane being as 'small' as it is, the photographer for Spokane is a friend of a friend. Her name is Lana Burnette and we will hopefully have our session before Gregory starts "real" Chemo. I'd like for him to be happy and feeling good.

I'm a little slow are responding to some of you.  Please know that I WILL get back to you.  Your words and intentions are priceless. 

Thank you's:

Yvonne: You rock, woman. Thank you so very much for the hillarious book. It's going with me to Seattle. You know me far better than I give you credit for. The bookmark? My favorite, ever.

Tana, Lisa, Alicia, Celeste: Where would I be without you? We will never know, 'cause I do have you. Muwah. Lipstick and all.

Our Potential Donor: Thank you for renewing my hope. Even if it doesn't work out, the idea that there is a "possible" match has help me tremendously.

Larry: What can I say, that is appropriate for this audience? Except you would like it if I did. THAT is what I thank you for.

Here's a little story I've got to tell..................

I'm a little OCD. (No brainer, for those that know me!) When this Odyssey began, I had absolutely zero appetite. I was getting by on V-8 juice, daily vitamins, daily tylenol, COFFEE, tea and soy milk.

Since then, eating heavy/large meals is challenging. From time to time, I'm able to eat a "normal" meal.

When we got home the only thing I wanted, and still want, is yogurt with granola and really good chips and salsa. This is typically all I eat, these days. Well, that and the occasional Girl Scout Cookie. It is that time of year, again.

I'm really picky about my yogurt. My favorite is Yami.  No one is Spoklahoma will carry it.  The ever-so-lovely Celeste, owner of Chaps, uses it in her yogurt parfaits.  Which is my standard order for Friday-Morning-Therapy.  She willingly has been selling me containers of it, so I can have it at home.  Also, Mrs Bowman and my dear friend April, have MADE granola for us.  :) 

Here's the story:
My good friend Tana's neighbor, Tom, has been tirelessly trying to get it stocked, somewhere, for me.  As with Tana, he is a Capricorn and in true Capricorn fashion, he will not cease until his goal is achieved.  He has forwarded me the email communications that he has had with the company.  Basically, we need to find a retailer in Spoklahoma who will shelve it.

Local Yocals:  Are you familiar with Yami???  Do you LOVE  it???  URM would be the store that would be responsible for distributing it.  Isn't URM a branch of Rosaurer's?  Maybe we could get Rosaurer's to shelve it?  Here's the contact for URM, Doug Titus at 509-467-3673.  I'm planning on making a call, myself.

Am I a dork?  Hellz to the Yeah!  I LOVE this yogurt and desperate times, call for desperate measures.  Besides, once you've tried it, you'll never go back to Mountain High.

*giggle freely, 'cause I know you want to*


Also:  Curtis comes up with some of the STRANGEST conversations.  Today's?

Curtis:  "Mommy, if you were on a deserted island, would you eat your foot?"

Me:  "Heck no!"

Curtis:  "Sissy, would you eat your foot?"

AnnMarie:  "Can I have Sweet & Sour?"

Me:  *cracking up, with my back turned*

Could this be it?

We have a POTENTIAL bone marrow donor match. Potential. Further testing needs to be done, the donor also need to be checked out. Make sure they are in good health and still willing to be a donor. Seattle Cancer Care Alliance (the folks conducting the search) are also looking into cord blood matches.  Not sure which would be a better match for Gregory.  I  need to research a little.  I would think that a cord blood would have less risk of GVH.  *shrug* 

So, things may start to move REALLY fast.  Soon.  I hope so. 

As always, I'll keep everyone updated.  Gotta jet.

How we found out Gregory had Leukemia.

One of the questions I get asked the most is:  "How did you know Gregory was sick?"  This entry has been tagged and can be easily found via the tags.  It has the same title and tag.

Well, we didn't.  We have three OffSpring.  From the start of school, pretty much until about May 1, the five of us usually rotate on kind of "cold" or another.  Public school will do that to you.  Curtis and I  also have a habit of developing coughs that just won't go away.  Curtis had one this winter and it was awfully persistent.  Larry's mom commented on day, over the phone, that his cough didn't sound good.  So I took him in and he got a clean bill of health.  Well, Gregory also had a cough.  It was a wet, deep chest cough.  He had had it for about 10 days.  So on Monday February 232rd, I called and scheduled him an appointment to see his Ped on Wednesday.  I work three days a week and Gregory stays with my mom, on the days that I work.  On Monday February 23rd, Gregory fell asleep in Nana's arms (which is really rare).  Early afternoon he sat up from his nap and started dry heaving.  *shiver*  Dry heaves make me really nervous.  Gregory had Rotovirus March of 2007.  He was not quite two.  Anywho.....  Mom also reported that his temp was elevated and he was acting lethargic.  So I called the docs office back and they got me in that afternoon.  I raced across town, changed into some "regular" clothes, picked him up from Mom's and got my butt to the doctors office.  We waited for a little bit in the waiting room and then we were ushered into the room.  Meanwhile, Gregory was curled up on the exam table, just kinda looking punky.  He continued to dry heave, as well.  They did a couple nasal swabs, one for RSV and one for Influenza.  As we all know, they came back negative.  The doc examined him and couldn't figure out what was going on, so he sent us over to the ER for IV fluids.  Since Gregory had Rotovirus, I was familiar with the procedure.  Before we left, though, the doc gave him 1/2 tablet of Zofran.  Which is the heavy duty anti-naseau pill that they give Chemo patients (ironic, eh?)  Note: He continued to dry heave, through the Zofran.

We get to the ER, get settled and the IV is administered.  (This is where it starts to get a little hazy)  Post fluids, I guess kids usually perk back up.  Well, Gregory did not.  Which alerted the doc to something else.  He ordered blood work.  When the results came back, he walked in the room and said:    "Well, we either have a viral blood infection or leukemia."  It was inconclusive.  At this point we were sent to Peds Intermediate and the grilling began.  Questions, questions, questions.  All kinds of history was taken.  More blood work.  More blood work.  More nasal swabs.  They were testing for Epstein Bar, Whooping Cough, Mono...........  This all happened to flippin' fast, yet it felt like forever.  Tuesday they had to do FIVE nasal swabs.  Then one of them had to be re-done, due to somethingorother reason.  More blood.  By mid afternoon on Tuesday, they were talking about Bone Marrow Biopsy.  Since they were not finding any answers, Larry and I were really hoping they would do this.  Only to rule out "worst case scenario".  Finally they did confirm that they were going to do a Bone Marrow Biopsy.  Whew!  We did not want to be sent home, not knowing what the hell was going on, only to have it rear it's head later and stronger.  It was scheduled for the next day at 9:00am.  Needless to say, I did not get very much sleep that night.

Wednesday, as we were being prepared to go down the hall, to the procedure room.........  Our room was filled with people.  A couple nurses, different docs.  It would seem that Gregory's case was attracting much attention.  I can only imagine what the discussions were like, between docs.  We had this one doc, who spoke heavily accented english.  Sometimes haltingly.  Gregory was crabby the morning of the biopsy, he hadn't eaten since the night before.  (You are going to LOVE this.)  Well, this doc asked how he was and I said he was crabby because he was H-U-N-G-R-Y.  (I stalled a moment before spelling it out, I wasn't sure if he would get it.)  The doc looks at me, quizzically, with his head tilted to the side and says, quite loudly, "He's HUNGRY?"  The nurses that were in the room, looked at him and all "shush'd" him.  I don't know if the doc ever got it, but here's a note to all people who work with kids.  If a parent is spelling something ~ do not say it! 

I had cleaned and packed all our belongings away.  The plan was that if we didn't have leukemia, we would be staying where we were.  If he did have leukemia, we would be transfered to the Peds Onc Unit.  I carried Gregory down to the procedure room.  They got him settled and hooked up.  There were a ton of people in the room.  He was put under for the procedure.  They didn't use general, just something that knocked him out for about 20 minutes.  It was kinda weird, 'cause myself, Larry and mom all stood just outside the door, super close to the foot of his bed.  They administered the sedation and started to go to work on him.  They finally pulled the curtain closed as they were pulling down his drawers.  It was at this point that I started to lose it.  I remember standing there just absolutely mortified and what was happening to my child. 

It wasn't very long and they were done.  Everyone vacated, except for one nurse and Larry, mom and I each took our place, around the munchkin.  He was sound asleep.  It would be about an hour and 1/2 before results would be back.  So I snuck off for a much needed smoke.  (yes, i'm a smoker, DO  NOT  give me grief over it.  It is what it is and I CANNOT quit right now.)  We all stood around and watched Gregory's monitors.  His numbers would rise and fall, based on whoever was speaking.  He never fully woke up, he stirred and slept.  Not long after the "time of results", Larry realized that his meter was going to expire and he didnt' have any change.  Well, my stuff was in our room and the end of the hall and I just ran down there to get him some change.  Well, I boogied down to the room stepped into the room and it had already been cleaned and turned, ready for a new patient, our belongings GONE.  See previous paragraph.  I KNEW at that point.  I got back to the room and told mom.  She knew what was up.  Larry fed the meter and returned.  Dr Reynolds eventaully came back into the room, along with the nurse and another woman (Who is now our coordinator).

His first words:  "We have a lot of work ahead of us."

Mommy's feeling glum. Go figure!

Hi there. Remember me? Did you miss us? (no really, I'm not narcissistic)

The last few days have been emotionally draining. I don't know if it's all catching up, the "honeymoon" phase is over or it's the moon's current phase (which I do tend to get a little ooky when it's nearly full). I haven't been able to handle much, lately. Laundry and dishes have been sorely neglected.

Saturday night I got to catch up with Julia!! Brewski's at Studio K. Man, that place is either really turning into a dive (and I don't mean in a good way) or I am getting too old. Needless to say, it was so nice to gab, gossip and realize how much we really do have in common. I'm looking forward to many more visits, now that she (and her new family) is back in Spokane. Love you, grl!

Sunday AnnMarie and I went to church. Recently I've been trying to find a place spirituality. Unity Spokane, is where we have been attending, lately.  Up until Gregory was admitted to the hospital.  This was my first time back.  AnnMarie really likes going, so we decided to give it a try.  Under normal circumstances, I cry easily at Unity.  Sunday was like my tears were on Steroids.  With a little bit of pissed off, mixed in for "fun".  The talk was about "healing" and how illness in our lives is there for us to learn from.  Which, at this point, I think is complete bullshit.  I cannot see a learning experience valuable enough for Gregory to have cancer.  Can't.  Don't know if I  ever will.  Conversely, I do believe that every moment of our lives is a learning opportunity.  So how can this be any different???  It just hurts too much. 

I'm having a really hard time being hopeful.  When it comes to JMML, Gregory is in the highest risk group.  Also, the fact that we are not able to be actively "fighting", has much to to with it.  Until a match is made, we are in limbo.  Monitoring and managing his blood counts.  Keeping him healthy.  This could end tomorrow or go on for months.  The absolute inablility to act is so fucking frustrating.  One of my favorite responses is, "there is a solution to every problem".  I'm not seeing a solution for this limbo.  Except trying to find peace.  It's not happening.  I'm not wallowing in grief, I just feel numb.  I feel like I have little or no affect.  (Used it right, that time.)  When I do react in a positive way, I catch myself and wonder where it came from.  Larry's the only one, right now, that I don't feel frozen around. 

We had blood counts, today.  His HCT is at 29, platelets are at 66 and the white blood cells are at 18.  The 6-mp is working.  It's bringing his white count down.  Doc thinks his counts will be OK for a while, so we don't go back for counts until NEXT Tuesday.  The 14th.  I'm a little nervous about it, but I have to trust that he knows what he's doing.  Gregory has been super crabby and not very hungry, the last few days.  I'm sure he's getting so tired of this, too.  We have a long way to go and I need to kick this funk. 

As we speak, Gregory is laying his head in my lap, still sleepy from napping.  Larry is on his way to the barn and the other OffSpring are with Nana.  We are listening to "Chillin'" tunes and cuddling. 

I should go, 

Becky, I'll answer you question in my next post.  I have not forgotten.

Thank you's for today:

Thank you for good tunes and cuddles.

Gotta jet.  Later, taters.

Notes From the Universe

You do realize, Mindi, that your batting average is 100% when it comes to prevailing in adversity, setbacks, challenges, and recessions?

No wonder you're so famous here.
Mwah, baby -
    The Universe



The last few days have not been too busy, just very full.  Gotta work, today.  I'll catch up later.  Love you all.  Gotta jet!

April 4, 2009

I've had several comments regarding my journal and what it does for me.  While I would love to chat extensively with all of you, this is my medium.  Anyone who knows me, knows that I have the gift of GAB.  Always have.  This journal is a way for me to have a constant conversation, with all of you.  Those of you who are reading this and we've never met?  Don't be shy.  You are more than welcome to drop a comment.  Disclosing your identity is not necessary.  Questions?  Ask away.  They help me to remember to post about things.  I have a habit of journaling in my mind, all day long.  I will find myself doing dishes, knitting, whatever and I'm composing my next journal entry.  I've never considered myself a writer.  Ever.  Writing was truly my worst subject in school.  I don't consider what I do here, as writing.  To me it's verbal.  It's not chronological, it's rather random.  Exactly like my conversations are. 

Today's thank you's:

Bre, Scott, Jess, Chris and the AA, Inc staff:  Holy cow, guys.  You all are awesome.  Thank you so much.  Pictures to follow.......

Monica:  You are truly one in a million.  Who woulda thunk it?  (not the you being one in a million thing, just ALL these years)

Dawn P:  Your phone call today, meant more than you will ever know.  Love you.

I feel like I'm forgetting someone.  Please know I am always thankful for all of you.

Peds Onc Clinic is filled with AWESOME!!!

Why?, you might ask.  Well, on Wednesday we knew Gregory would be getting platelets, today.  So.....  What did they do last night???  THEY ORDERED THE PLATELETS!  They were ready and waiting for us at our 9:00 appointment!  The best part, we were home by 12:30!  Which included a stop at Chaps to pick up some yummy Yami yourgurt!  It is the best yogurt, EVAR! 

Today's numbers:  HCT:  31 ~ RBC: 4.10 ~ PLT: 23 ~ WBC: 17.4

Here are the "normal" ranges for these indicators:  HCT: 34.0-40.0 ~ RBC: 3.90-5.30 ~ PLT: 250-550- ~ WBC: 6.0-15.5

His hematocrit is holding!  He is just chewing through the platelets, though.  I will soon be receiving a phone call with is post transfusion platelet numbers. 

While I was there, I picked up a really great book.  Recommended to my by someone on the BMT-listserve.  "Childhood Leukemia" by Nancy Keene.  It looks like a great book.  I'm anxious to get into it.  I'm a facts and figures nut, so this is great for me. 

Yesterday we all hung out together and vegged.  Curtis and AnnMarie went over to Nana's for a sleepover, late afternoon.  Which meant that since it was a Thursday, we had a window of opportunity to take Gregory out for a quiet meal.  After a quick shower and dressing change, the three of us headed to Applebee's (Thank you Will & Gina!) 


I've been trying to get some hats knitted for Gregory.  I picked up some awesome Cascade Sierra Quatro yarn.  It's 80% Cotton & 20% wool.  Everytime I try a new Cascade yarn, I'm reminded how much I am in love with it.  Note to self:  When casting on and using a k2, P2 rib?  Mke sure your stitch count is divisible by FOUR, not TWO. 

I've been trying to post this for the last 30 minutes.  I  need to jet.  Gregory is espcially needy and cranky.  I can't seem to to anything right, for the time being.  This is due in part to the fact that his "routine" at the clinic was off.  Someone else drew his labs this morning and she did not want to sit on the floor.  Gregory likes me to sit on the floor, him in my lap, while they take vitals and draw labs.  Kari & Katie are more than accomodating for him.  This threw his whole day into a tizy.  It's continuing.  He's calling for me to sit with him, so I'm gonna go do that.  More later.  Gotta jet!  NOW!

Notes from the Universe

When you visualize a great dream of yours coming true, Mindi, what do you imagine?

Do you see yourself jumping up and down, doing the happy dance, looking to the sky, and shrieking, "THANK YOU! THANK YOU! THANK YOU!"? Can you feel the skin on your face stretch as you smile from ear to ear, or the palm of your hands sting as you slap more high-fives? Can you feel the phone in your hand as you dial your best friends?
Yeah, I think you should.
"Very should,"
    The Universe


YESYESYESYESYESYESYES ~ WHEN WE GET A BONE MARROW MATCH!

Things I see in my sleep: WBC, RBC, HCT, PLT

Whew!  Gregory finally fell asleep.  Yes, it's after midnight.  We had blood counts today and spending four hours at clinic really tuckers him out.  Therefore, he crashed about 4:00 and slept for several hours.  Which further complicated night time sleep!  Thankfully, we have nothing on the agenda for tomorrow morning and I'm hoping that we can all sleep until 8:00.  At least. 

Today's numbers:  White Blood Cells:  19 ~ Hematocrit:  31 ~ Platelets: 28   So............ Platelets on Friday.  Which means no Friday Morning Therapy.  Julia, want to come over tomorrow?  Which is Ok, 'cause it's spring break and Friday Morning Therapy with OffSpring is challenging.  To say the least.  Just a quick note about his numbers, Gregory is not producing healthy cells.  Therefore these numbers are based on what is left over after the last transfusion.  He had a platelet transfusion on Tuesday the 24th.  Post transfusion:  168.  Friday morning platelets:  83.  He's losing them pretty fast.  It looks like we will be transfusing at least once a week.  Crazy.  I need to call and see if our insurance has a cap for transfusions.  I really did not think I would need to consider this.  Thank the gods that folks have offered to donate in Gregory's name.  I'll keep everyone posted, in case we need to make a plea for donated blood.  Here's the deal, you can go to your local blood bank, regardless of your blood type, you can donate for Gregory and we will receive a credit in his name.  Pretty cool, huh?

AnnMarie went with us to clinic, today.  It was really cool.  She got to see the whole thing.  I'm hoping that it helps to remove some of the mystery.  Since it is spring break, there were quite a few siblings, too.  She got to meet alot of kids.  It was pretty awesome.

Bone Marrow Match update:  Ugh!  Talk about details!  Last week they requested more blood.  Last week they re-sent the consents to the correct address.  I just received the consents, TODAY!   It was on my list to call the Search Coordinator, today.  She called me, not long after we got home from clinic.  She was surprised to hear that I had just received the consents.  Here's the kicker.  They need a consent to search, before they begin the search.  So all this time (granted it's only been 3ish weeks, but it's been 3ISH WEEKS!) I thought the search was on and it wasn't.  I asked if I could fax the consents, she said yes.  At this point she then asked if she could take a verbal consent.  My response?  Hell yes, you can take a verbal.  Let's get busy!  After I got off the phone with her I called Jennifer, his nurse coordinator at his oncologist office, to share the news.  Jennifer is so awesome.  Regardless of the nature of my calls, she ALWAYS call me back.  Quite promptly, too.  Most of the time my phone calls are simply informational.  No need for a return call.  Yet, she touches base with me.  It's rather comforting.  She is kind of a tough nut to crack and we are developing a great rapport.  Which usually comes second nature for me.  This one has been a bit challenging for me.  I was a little nervous, in the beginning.  Afterall, this is the person that is going to be my bridge, touching stone and source of information during this whole process.  If I had not been able to find a groove with her......... I was worried.  Silly?  Stupid?  Maybe.  Except I don't have to worry about it anymore.  To be honest, I see alot of myself in her.  She is incredibly professional, very good at what she does and has enough spunk and funk to be fun, yet professional.  Can you tell I really like her?  Also, she does not speak to Gregory like he is a baby or is sick.  'Cause he's not.  He just has cancer.   

Getting my head around this word: cancer.  I have always seen cancer as an object.  A mass that needed to be removed and anhililated.  Something that was defined by stages.  Learning about the world of Leukemia has been weird.  Leukemia is not a mass.  It cannot be removed, anhililated or defined by stages.  It's this abstract thing that is gauged by cell production.  It's not just cells for a certain area.  It's cell production for you whole fucking BLOOD.  Blood.  Wild.  Crazy.  Blood.  Something so basic, yet so flippin' important to life.  I'm still learning, as I go. 

I'm also meeting more families.  When you sit in the playroom for three hours, waiting for counts, it leaves lots of time for getting to know fellow families.  The variety of situations/types of cancer/families is amazing.  There have been several times that I have thanked my "lucky" stars that this did not happen 10 years ago.  I'm very grateful to be "older".  I do not think I would have been able to manage this, in the manner that I am now, when I was in my twenties. 

Thank you's:

Cat:  We received our boxes today!!!!!!!!  The OffSpring were absolutely JACKED!!!  Everything was a hit.  Those little toothbrush things are awesome!  The book is a great reminder, too.  Thank you for inscribing it, too.  I love that.  I'm so glad you are part of my life, girl!  Oh yeah, Flarp was/is a huge hit.  Thank gawd I find humor in fart noises, too.

Nana & Papa:  I can't imagine what you two are going through.  I can't imagine feeling helpless and somewhat removed.  I am so grateful for your help, understanding and presence.  For letting me be a space cadet and occasionaly loosing it.  It's not intentional.  It's safe.  Thank you!  I love you!

? the Dyson:  I'm still in the newlywed stage.  I still use it at least once a day.  It's a dream. 


Wow.  Feeling a little wordy.  I have more to say, but I'll "save it for later"*.  Gotta jet.



*First person to get this reference will receive my undying admiration.  Googling it doesn't count.  Don't cheat.

February 26, 2009

26 feb 2009
Originally uploaded by ehorsem

I had to add this. This is Gregory when he came out of the anesthesia from placing his central line. Thursday, Feb 26, 2009. It just breaks my heart to see that little boo-boo lip. I love you, munchkin.

money + health = f*ck

I've been wanting to post about this for awhile. I've not posted this topic, out of respect for my employer. Yet, tonight's Frontline: Sick Across America, prompted the following.

Let me start by saying this: I am not placing blame, anywhere. The healthcare system is broken. We are in an unfortunate situation. I simply add this to Gregory's story, because it is Gregory's story. Also, it is about awareness and action. Action needs to be taken. I don't have an answer as to what that action is or what the answers are. We desperately need healthcare reform.

I work for a small company. About 13 employees, with not all of them taking the group insurance that is offered. Which spreads the risk over very few employees. Due to the size of our employee base, we do not qualify for FMLA. Due to the size of our employee base, we do not qualify for COBRA.  In order for me to maintain my benefits, I need to work the qualifying minimum number of hours.  Which has been challenging.  I'm currently using sick/vacation time to make up the difference.  We do have a provision in our contract that allows me to continue coverage, for a three (3) month period, while not working.  As long as I pay my premium.  There is also an office policy (sorry, I'm gonna let the cat out of the bag.  I don't think my fellow employees know this part, yet!)  that allows fellow employees to donate vacation time, in order for me to maintain my minimum number of hours.  Which leads me to the point.  We are in the not-so-unique situation, where someone gets sick and the possibility of conitinuing coverage is slim.  I do know that we are able to obtain an individual plan.  Which means a hefty premium.  So this is good.  We will not be denied coverage, as long as Gregory maintains continuous coverage. 

I decided to take a peak at what claims have hit the system, so far.  Holy cow.  So far, and this is not all inclusive, this is only what has been billed to the insurance company, so far.  There are claims totally $89,000.  Which doesn't mean that is the allowed amount.  This is simply what has been billed.  We haven't even started treatment, yet.  We have a cap on the Bone Marrow Tranplant benefit, as well.  $250,000.  I don't know if that is a one time benefit, either.  What happens if we need to repeat the BMT?  Which is common.  This is a question I need to get answered.  We also have a 2 million dollar cap.  This is a lifetime cap.  For Gregory, this means his life.  We will do everything we need to.  We will move mountains to protect him.  Yet, this whole health insurance thing, is scary. 

Like I said, there is NO blame place here.  None.  I wish to document Gregory's story and provide awareness.  Those of you who are fighting for Universal Healthcare?  PLEASE, continue.  I can't help you in person, for now, but I am with you in spirit.  This needs to change.  We won't reap the benefits (ha, ha), but it needs to happen.  Now.