Soldiers & Guards

I've been siting here poking around on web sites.  Looking up info.  Catching up on emails.  Learning stuff.  Then two realizations occur. 

I'm Soldiering up.
I'm Guarded.

I'm saving the emotions.  I'm keeping things at an even beat.  Except for this very moment.  My heart is beating like a newly caged bird.  The realization that we are about to save our child's life.  We are getting ready to take him to deaths door and by the magic of medicine, bring him back to life.  In order to save his life.  This precious little life that has brought so much joy, light and life to our family and everyone we touch.  This little being who has not even begun to experience all that there is, waiting.  Waiting for him to explore, experience and live.  LIFE.  Gregory's life.  Sounds melodramatic, doesn't it.  It's not.  It's our reality.  Ours and thousands of families like us.  Which is the amazing thing.  Those that I have met, we are all valiantly fighting for our child's life and continuing on with life.  'Cause it does continue.  We casually discuss counts, stages, drugs, diagnosis stories, facilities we like, procedures we don't, ANC's, transfusions, LP's, BMA's, chemo protocols, induction, intensification, maintenance, steroids, platelets, blood type, Unrelated donors, sibling donors, Day 80, fever's, cold symptoms, intubation, conscious sedation, Day Of Diagnosis, central lines, Hickman's, Port's, poke stories, Child Life specialists, favorite nursing staff, partner relationships, Other Children...........  We rattle through these details as if we are reciting a grocery list.  'Cause it has become as routine as our beloved and long forgotten grocery lists.  "You mean I should have one?"  (Truly I should.  I can't seem to remember half the things I need, these days.)  If I keep myself closed off, inaccessible I can make it.  Here I don't have to feel like I need to live a double life.  Mostly because I don't.  This is it 100%.  If I don't want to look you in the eye and say "Hello", it's totally acceptable and no one take offense.  If I need to keep my head down and be to myself, that's OK, too.  I'm sorting through myself, right now.  Building my reserves.  Constructing my Wall of Warrior.  Gregory will get through all of this.  It's gonna take all I've got to make it as easy as possible.  He will not understand any of it.  I can't explain it to him, either.  It is what it is and I am here to lovingly guide and cherish him to health. 

I've come to the realization that my entries lately, are vacant.  I've been tremendously guarded in revealing myself.  I will not be resigned to continue this way.  Cannot do it.  It's either all or nothing.  If I forget something, say something offensive, or hurtful.  Remember this:  This medium is two dimensional.  I cannot possibly express everything surrounding a single sentence.  I NEED to have the freedom to get out what I need to get out at that particular time.  I need to be OK with the fact that these words are mine.  These thoughts are mine.  I gladly share them with the world.  I am strengthened knowing that people are reading my words.  Knowing that Gregory has hundreds of people fighting with him, every step of the way.  Knowing that although I can be blunt, it's simply for efficientcy purposes.  I do not have the capacity, currently to filter myself.  I'm getting ready to be brutal in my entries.  I'm trying to express something and I'm not doing a very good job of it.  I guess I'm getting ready to drop the veil and show it all.  I hope you are ready.  I need to do it.  Which doesn't mean that the next entry will be all heavy.  It doesn't mean that my humor will be gone.  It just means that I'm giving myself permission. 

Srsly.  It's time to put the heavy thoughts away, for a few hours.  Can I do a ctrl-alt-delete to my brain, Please?  'til later, gotta jet.

Surviving.

Another pretty decent day.  Gregory and I slept in, ate &  showered.  Dad showed up around 2:00.  He picked up a remote controlled car for Gregory.  Perfect item for him.  He and Papa have been having a ball with it.  We decided to get out for a little bit and went down to Magnuson Park.   We didn't take much time to explore it, but it's pretty neat.  Gregory had a chance to run his RC car with not risk of hitting anything.  We then tried to find the waterfront.  Gregory asked me to carry him and I knew he was serious when he agreed to be carried in the Hip Hammock.  He snuggled down and we explored a little.  This park is huge.  It was once a naval facility.  We could not find a way to the water, but I have plenty of time.  I just wanted to get him out and see something different. 

I really don't have much else to get down.  I'm just so full of stuff.  I'm clogged and just trying to calmly get to Monday at 4:00.  I even called the hospital today to "confirm our reservation".  I do not want to face a glitch.  Not that there won't be any, I'm just being a control freak. 

I'm gonna go do somthing else.  I'll have plenty more during the next week.  I'll have started the real Odyssey and won't have this weird, spacy feeling.  'til later, gotta jet.



ETA:  Much better reference for Warren G Magnuson Park

Protein tyrosine phosphatase, non-receptor type 11 (PTPN11)

Man Gregory was GREAT today.  Yesterday he fell asleep around 5:00pm and slept until Midnight.  Was up for two hours and then slept until 9:00 this morning.  He was wiped out.  Once he woke up this morning, though, he was a rejuvenated kid.  Happy, loving and easy going.  He also had a great appetite today.  Yay!  We went in for counts only.  We were in and out within 30 minutes.  A phone call this afternoon reported:  Hematocrit ~ 27, Platelets ~ 22, White Blood Count ~ 21, Blasts ~ 0.84.  The new chemo is working already.  Bringing down his white count and blasts.  Keeping everything in line.  No transfusions this week!! 

I did have my first experience with waking up sobbing.  With the remnants of a very vivid dream.  Not a gloom and doom, dream.  I remember exclaiming "My child has LEUKEMIA!" and bursting out in tears.  I woke up sobbing and couldn't stop.  Thankfully Gregory slept through it.  I have a feeling it won't be the last time, either.  I  have to admit that I  have not expressed much through tears.  I haven't broken down with uncontrolable sobbing.  It's not how I roll.  Analyzing, talking, writing, learning.  That is my modus operandi.  Sharing.  Community.  Thank you to all of you have made this possible for me.  To express myself and work through this horribly awful part of our lives.  I found myself getting choked up today as I was doing mundane tasks.  Vaccuuming.  Laundry.  Preparing a meal.  We are quickly approaching the apex of this roll coaster ride and the descent is unknown.  Will it be easy squeezy.  Will it make these last three months look like child's play.  Don't know.  Won't know until it's happening.  I'm prepared for the worst, expecting the best.  It's the most I can do.

I've been wondering how much I need to prepare Gregory.  He knows we will be going in the hospital on Monday.  I  think that is all he needs to know.  He is entirely too young to understand or 'get' anything else.  We've been talking about what he wants to bring to the hospital.  We've been reviewing the menu.  Stuff that is important to him and he gets.

Dad is stopping by tomorrow for a visit.  Mom will be here sometime on Sunday.  Time is flying.  MONDAY.  MONDAY.  MONDAY!  Holy cow.  We are really doing this.  This is really happening.  There are moments when this feels so flippin' normal.  Moments when it is so surreal. 

I'm hoping to find a local photographer who will come and take some black and white shots of Gregory, as he is having his transplant.  Even though the moment itself is rather anti-climatic I feel the need to document and immortalize it.  Not with my cheezy snap-shots, either. 

BTW:  PTPN11 is the gene mutation that is the cause of Gregory's Juvenile Myelomonocytic Leukemia.  In case you are an information freak, like me.  Here's more from Wiki on PTPN11.


Time to sign off.  'til later, gotta jet.

Caption needed, please.

Greginator 072
Originally uploaded by mindithemagnificent

I'd like to have this printed in postcards/notecards. I'd like to add a caption, though. My creative juices aren't working properly. Anybody have a suggestion????

I'm thinking a dialogue/thought balloon of some kind.

Thanks, guys 'n gals.

The Gauntlet has been thrown.

Which sounds like more fun, Mindi: Being showered with miracles just because I love you, or being showered with miracles because you dared, stretched, went out on a limb, raised the bar, threw down the gauntlet, faced your fears, and grew into more than you ever knew you could be?
Dare ya,
    The Universe



Challenge yourself, Mindi, every single day.



You can get Notes From the Universe, too.  Here.

Don't it make my brown eye's blue?

Yes, I am awake.  Thursday was an exciting day, for me.  We were up early for counts and our Data Review  Conference.

In a nutshell:

Gregory is in stellar health.  Heart, liver, lungs......  We are good to go.  There are two rather small things that need to be taken care of, as we go.  In the bacterial/virus testing that they did they discovered that he has dormant/latent HSV (Herpes Simplex Virus), which is the common cold sore.  Also, despite the fact that he has never had, nor been immunized against......  he tested positive for Chicken Pox.  Since he has never had the disease, we are treating him as if he has never been exposed.  (Keeping him as far away as possible from chicken pox.)  We are also treating him like he has had Chicken pox, in the respect that:  He will receive anti-viral medication for one year post transplant.  Acyclovir.  The Chicken Pox virus can awaken and manifest as Shingles.  We do not want THAT. 

Something exciting:  Since Gregory is so little and our donor is an adult, we should have enough Bone Marrow (Stem) Cells to split the quantitiy, save half (freeze) and have it on hand, in case we need to do another transplant.  Talk about cool.  Which means less time and less money for a second transplant.  Should we need it.

I also found out today that SCCA (The Hutch) has only done 10-15 BMT's for JMML.  Period.  Not 10-15/year.  10-15 Ever.  Theu pioneered the BMT process.  This is a premier transplant center.  Kinda speaks to how infrequently this leukemia is diagnosed.  No wonder I haven't been able to find a family with a child near the same age and stage of treatment!!!!!!!!!! 

I've been trying to make nice with Sock Yarn.  It's just not working for me, right now.  I really want to make a few Sock Yarn hats for Gregory.  They can wait.  They actually would be better for this fall/winter, once we get home.  So I have gone back to the weight that I can knit up, easily.  Worsted.  This one is maily cotton, though.  Perfect for a summer spent in the hospital.

We have counts, again, tomorrow.  Today's were holding:  Hematocrit ~ 27 and Platelets ~ 28 (yeah, they went up six points.  Strange.)  This new chemo can make his counts plummet.  We are trying to see if a tranfusion will be needed before the weekend.  Sleep schedule is all messed up.  That's what we get for taking a nap this afternoon.  We are just preparing for wonky hospital hours.  I can't remember at what point this is, I think it's during chemo, they will be flushing him with a ton of fluids and I can expect Gregory to need to use the potty every two hours.  Crazy.

Well, that's about it for now.  'til later, gotta jet.

It's what you wear from ear to ear.

I've been having a hard time journaling, lately.  If you hadn't noticed.  We have been living each day and simply soaking it up.  By the time I sit down to write, it gets stuck between my solar plexus and my collar bone.  Hmmmmm.  Isn't that where the heart lives?  Imagine that.  I have this desire to hoard these last few weeks.  As if I'm some greedy hermit who lives next door to you, but never interacts.  I am also suffering from a bad case of "What if's".  None of them have to to with his treatment, either.  They are all germ/virus/bacteria/fungal related.  What if he touches the wrong thing and some creepy microbe gets in there and fouls everything up.  It doesn't prevent us from going out, it just means that no one that doesn't need to, doesn't come within three feet of us.  Which brings me to my safety zone.  Back HomeHome I had about a 5 mile safety radius.  I'm slowly establishing one, here.  How far can I travel, which route and during what time?  'Cause I KNOW I need to get out, once in a while.  I KNOW that when we are out-patient, it would do Gregory good to go for a pleasure ride.  I'm so grateful to have a car, I'm so grateful to be somewhat familiar with my surroundings. 

I cancelled my Netflix subscription.  I just cannot watch any new movies.  I cannot watch any new episodes of my favorite premium channel shows.  I cannot get hooked on a new series.  I find myself craving all my comfort movies and shows.  Stuff that I know like the back of my hand that bring me happines, expected emotions and familiarity.  Those beloved characters that live in your heart.  You may not think you feel this way about movies or TV shows, but stop and think for a  minute.  There is at least one movie and one series that you could watch over and over.  I exposed Gregory to Annie, tonight.  I LOVE that movie.  The 1982 version, if you please.  How can you go wrong:  Carol Burnette, Bernadette Peters, Ann Reinking, Albert Finney..........  Tim Curry!!!!  I wanted to be Grace. 




Today was yet another BEAUTIFUL day.  We had counts and an exam, nutuition & research, too.  His hematocrit is holding at 27, his platelets are at 22, his white count went up to 25.  There is also an elevated number of blasts.  Which means that we go back on an oral chemo.  Just to keep it from raging, before we are admitted.  He is on 300mg/day of Hydroxyurea.  This is something I've never heard of and I don't know anything about it.  He will only be on it for five days, though.  Due to the level of his platelets, we are having another platelet count tomorrow, with possible platelets and if we don't need platelets, then we will be back Friday for another platelet count.  Why all this?  They are trying to get his platelets done before the weekend and before we are admitted MONDAY.  Yep.  FOUR days.  We will go in at 4:00 on Monday June 1, 2009.  He needs to be "Loaded" with Dilantin.  He will receive one dose at 5:00, one at 8:00 and one at 11:00.  The chemo he will be receiving can bring on seizures.  The Dilantin is to prevent seizures from happening.  Then his six days of Chemo will begin Tuesday.  Amazingly enough the terror that I had been experiencing has suddenly vanished.  Don't know where, yet I'm sure another unfortunate family has inheritted it.  There have been a ton of new arrivals here at Ron Don.  In terror's place I now find a weird feeling of Excitement.  THE DAY IS ALMOST HERE!  We are anihilitating this freakin' beast, evicting it and new tenants are moving in.  We finally get to do something. 

The new chemo drug was not available through the pharmacy at Clinic so we took it to Seattle Children's.  Which is SOOOOOO close to home.  There was quite a wait, so we dropped it off and went exploring.  Like I said before, the weather has been so perfect.  Crisp sunshine, lush, green.  Temps around high 60's to low 70's.  Perfection.  We took off on northbound Sandpoint Way and just drove.  It turns into 125th and goes through Lake City and hooks up with Hyw 99, AKA Aurora.  We then took Aurora north.  The trafic was perfect and we just kept scooting along.  I had to wake Gregory up, before he was ready this morning, so he napped the entire way.  I drove all the way to Lynnwood.  Which really isn't that far.  On the way back, guess what I found?   ARBY'S!!!  Or Barbie's as Gregory calls it.  They have cooked, sliced ham.  Gregory was still asking for ham, today.  So he had a regular ham Arby's and some fries.  He gobbled up a bunch of fries, but three guesses how he ate the sandwich and the first two don't count.  He. Took. One. Bite.  Ugh!  *shrug*  There ain't nothin' I can do about it.  He will eat when he is ready.  Today his weight was at 12.8 kilos.  .5 kilos away from our goal.  Or one pound.  Thankfully I am more than prepared to see him in an nG tube.  I said prepared.  I didn't say I would handle it without a hitch.  We will see when it comes. 

I cannot wait to get into the BMT apartment.  Having to use a kitchen on another floor, having to story our food on another floor, having to do laundry two floors down.  I realize how lucky I am to have all these amenities at home.  I know it could be worse.  Yet............ it could still be better and it will be.  Having to be so anal about his food prep is trying when you are around people who don't use the same precautions.  Having to explain constantly why he cannot have any of the salad from dinner, that's been out for several hours.   Or the pancakes that God knows how many people have breathed on.  Which is no biggie for you and me, remember.  Totally.  Our bodies can fight that stuff off without even breaking a sweat.  I read in our arrival conference notes that at 100 days post transplant, Gregory will only have about 50% of his immune system.  With the balance getting caught up by the end of 12 months post transplant.  Once again, Crazy.

I managed to get Gregory in Pajama's tonight!  I'm hoping that this is a change.  Except I have a feeling that we will be back to square one as soon as we are inpatient, again.  Just goin' with the flow. 

Alright, that super cute little body is just calling me to cuddle it.  I need to go snuggle up and read myself to dreamland  er, closed eyes time.  'til later, gotta jet.

P.S.  I will be loading some pix to flickr of Gregory's healing chest, post the changing of his central line.  It's pretty rough.  Just a heads up, incase you go looking for grins and giggle, which are there, but so is that.  They go together, these days. 

Spooky coincidence.

Guten tag!

Blood draw, nutrition visit, exam and research coordinator visit.  Fairly quick day, all in all.  It will be good to get Gregory out.  Yesterday he was going a little stir crazy so we ran to Target.  Holy cow.  The selection was Dine-O-Mite.  We just kinda perused the racks/shelves and had some out time.  You can only go to the Grocery store so many times.  Especially when public play areas are a no-no.  Including parks.  I did manage to break down and get Gregory some "girl" leggings.  They are so cute on him.  They have a sweat-pant-like cuff so they don't look girly at all.  They were only $5-, too.  Yay for comfy pants that he can sleep in.  He still refuses to wear pajamas. 

Um yeah.  I needed a new book to read and I've been hearing great things about Jodi Picoult.  What one do I pick out to start with?   My Sister's Keeper.  Not the greatest start, but it's really good, so far and I can't quit it.

Time to rouse the chitlin' and get going.  Love to you all.  'til later, gotta jet.

All hail Emm?

More of the same.  Enjoying every moment. 

Dressing change today.  Man, did they do a number on Gregory's little chest.  He has a 4"x4" area on his upper left chest that is a huge green bruise.  Also, that sixth wound I thought I found?  It's another hematoma.  It's healing, too.  Daily dressing changes have also made his chest so tender, red and raw.  Thankfully we have the go ahead to dress it with tegaderm, like normal and go back to weekly dressing changes.  Whew!  At least he will have seven days to heal his surrounding skin. 

We don't have anywhere to be, tomorrow.  Another precious day to be together, before it gets crazy.  Tonight we watched the Men In Black movies.  I love, love, love, love, love these movies.  Here's my FAVORITE scene. 


I have some paperwork to do tomorrow along with some general record keeping and correspondence.  Gotta get it done!  I'm supposed to be logging his daily intake of food and fluids.  Haven't been doing it.  It's been very little, though, which is really do different than normal. 

Not much else, guys.  'til later, gotta jet.

Exploiting my brother? Maybe. It's all good, though.

Truly not much going on over here. We are enjoying our "salad days". We are playing, watching movies, reading, knitting and trying to get Gregory to eat as much as he can. We have a wound check, today. We probably don't need it, but his whole upper left chest is one giant green bruise. Which means it's healing, but I just need to be sure that it's OK. I'm trying to find a fun/eclectic toy store. I'd like to have a place that I can pick up a few things for him, that I can give him during our stay. I do not like the idea of going to the mall, but it looks like I may have to hit NorthGate when mom comes over, next weekend. I cannot take Gregory to the mall, so I will run over there, then.

It's been really quiet, around here. Many families were able to get "passes" to go home for the extended weekend. It's nice to know that the folks who are here for a LONG time get to do that.

On another note. This is my little brother, Travis. For those that don't know: He is a student at the Trinity College Of Music, in London. This is a video of him practicing for his exams. His instrument of study is the Mandolin. I must admit, that I do find a giggle or two watching my 6'6" brother cradling a Mandolin. (No offense, CheeseBall. I mean that in an endearing way.)

Sunshiine & Green

My belly is full, Gregory is happy and comfortable, my knitting fix is happily fulfilled and De-Lovely is playing.  Things could be a heck of alot worse.

Yesterday Gregory had a dressing change.  When they bandaged him up in the O.R. they placed a biopatch and Tegaderm dressing.  Not a good idea.  It was a major pain to get off.  The nurse and I had to both work to get it off safely and with the least amount of stress to Gregory.  Thankfully, Christa from Child Life was available to help distract him.  We came home with a simple tape and gauze dressing.  With directions to watch this sites for oozing.  It would indicate that his platelets were too low. 

He is doing amazingly well for having five healing incisions.  Yeah, we found another site upon removing his dressings.  My therory is that they were going to place the exit somewhere else and then changed the plan.  Can you say connect the dots, when he grows up? 

We slept in today to the incredible hour of 10:00.  Couldn't quite believe it, but it felt great.  Today we just goofed around, had to go to the grocery store.  The other day Larry had the most brilliant idea of subsituting Gregory's milk with half and half.  He also reallly likes hot cocoa, we were out, so we picked some up.  Sounds thrilling, doesn't it?  I've gotten a good start to his hat, too.  He informed me tonight, that he wants stripes.  Consider it done, young man.

I tell you, I love kids.  They are so open and honest in their curiosity.  The kids here that are of an age to understand what's going on with themselves or their siblings, but young enough to not have all the teen angst are the best.  One kid that we met in the kitchen, flat out asked me, "What does your son have?".  It was so refreshing.  A simple question, asked without all the emotions that we carry as we experience life and the ramifications of other people's reactions.  I constantly have to remind myself that they way people react to me is so not about me.  It's a hard thing to remember. 

Today we found a knitting store that is a mere 12 blocks from us and it is heaven.  Their website is so-so, but the store is awesomeness.  It's called Acorn Street and has the largest selection!!!    The sheer quantity of colors to choose from was baffling.  A HUGE selection of Cascade 220 and true rainbow, wool yarn.  Yummy.

When we had his dressing changed on Friday, I asked for a wound check on Monday.  I don't think we will need it, but it will be good to double check.  We have counts and an exam on Wednesday.  Data review conference is Thursday.  This is the final rubber stamp for admit and Chemo to begin on June 2.  It's quickly coming.  Quickly. 

Gregory has had a few homesick moments.  Today he got all choked up and teary over not seeing Dr Reynolds.  Once I explained that we would be seeing him when we were through here, he was totally OK.  He is too young to really explain what's going on, but old enough to feel it.  We discuss it when he needs to hear it.  Lately he has been really learning his letters.  Some he knows perfectly.  Others are hit and miss.  My favorite is when he spells "STOP".  Mostly it's correct, occasionally he says, "Snake-T-O-P".  It took me a while to figure it out, until he spelled something else with and "S" and said "snake" instead of "S".  "Snake-T-O-P".  Well, and "S" does look like a snake.  Creative little turkey.

Curtis and AnnMarie returned from CampOut yesterday and they sounded GREAT.  Tired, excited and full of an amazing experience.  Thank you to each and everyone of you who helped to make their trip a little easier. 

I posted pix of our room to flickr.  This is my favorite spot, though.  Sunshine and Green Foliage.  Windows that open, too.



I need to get busy and remember to take pix of our surroundings. 

All ye Peds Clinic local yocals.  I am once again reminded of how good we have it in Spokane.  Nothing in particular, just that we have fantastic Providers, Staff, Nurses, Child Life, Candlelighters, Assistants, The Clinic itself and The Unit, etc.  If you get a chance, please thank them for me.  We are so lucky.  I've met several families here that have been here going on four years.  FOUR YEARS!  Which makes my four months look like an overnight stay.  Crazy, I tell you. 

That's about it, for now.  'til later, Gotta Jet.

This is all you get, tonight.

AnnMarie's Sweater ~ Front
Originally uploaded by mindithemagnificent

Tonight's therapy brought to you by "Sticks 'n String".

AnnMarie's sweater is finished. I just need to wash and block it. Don't tell her, though. I haven't told her, yet. I cannot wait to get it to her.

I'm now working on a Chemo hat for Gregory. Even though we will be in-patient most of the time, they keep the place pretty cool. I have tried several times to get a Chemo hat finished for him and I haven't been able to. I've frogged about three attempts. I have a feeling that it is some sub-conscious refusal to accept what I was making and who I was making it for. Gregory and I managed to hit a Local Yarn Shop the other day and HE picked out this yarn. Wanna know what colors? Solid Red & Solid Evergreen. Looks like we will have Christmas in June in more ways than one.

I'll catch up on today's events later. My knitting is calling me and I need to answer. 'til later, gotta jet.

A central line is reallly no big deal. Except it is.

Out-patient line placement is not fun.  Gregory's first line was placed while we were in-patient and we had constant care and no reason to take him anywhere.  We arrived at Seattle Children's at 8:15, left at 3:15 and were home at 4:30.  It was long, but it went amazingly quick.  Niki, you are so right about this time flying. 

Here's the details on the placement of his Hickman :  Rather than try and "re-wire" Gregory's existing line, they placed an entirly new line.  Using the existing site, means a risk of infection.  Any risk of infection is a no-go in my book and I'm really glad the surgeon saw it that way, too. Despite the results.  They are not bad, just much more complicated than the could have been.  When a central line is place, they use what they call 'cuffs' at the exit site.  These act as an anchor and the surrounding skin grows into the cuff, allowing the line to stay in place.  They removed the cuff and went to pull the line out and met resistance.  About four inches up the line, that is tunneled under his skin, there was a second cuff.  In order to remove the first line, they had to make a very small incision above the cuff and go get it.  At this point, they were able to removed the line.  So.  If you are counting holes, he has a healed hole at his right side neck, where the line was originally threaded through.  A hole where the line came out and a hole where the second cuff had to be removed.  Now.  Time for the new line.  The entry spot for this line is on the left side of his neck.  It was tunneled, threaded around the heart, into a vein and it exits between his left nipple and his arm pit.  Two more holes.  His original line exited about mid chest.  The current exit spot is where they are mostly placed.  At least over here.  I can't speak for Spokane.  (Jess, where does Ellie's exit?  Just curious.)  He now has a line with two "tubies"  pronounced toobies.  I really hate this word.  Why can't they be called by there real name?  I need to find out what they are called and start using it.  I do not like dumbing down language for kids.  Especially as it relates to their body.  I digress.  Once they had the new line place, it wouldn't draw properly.  It was intermitent.  Which is NOT  a good thing.  When it was placed deeper, it ran perfect.  I'm not sure what the long term result of a deeper placed line is.  I'm going to ask tomorrow.  Needless to say, the procedure took longer than anticipated.  So did his recovery.  It just took a little longer for him to be OK to come out to me.  As part of the placement, they also take a post x-ray to verify a good placement of the line.  I really need to start keeping track of these things.  It all equals a bead!  More on that, another time.

All this time, I've been anxiously awaiting his arrival.  Nervously trying to distract myself with reading.  Not doing a very good job.  He finally gets wheeled in and here is this precious little nymph, sitting up, naked except for a diaper and calm as can be.  Looking like he'd been wrung out.  The nurse who brought him back just could not say enough about how well he cooperated, went with the flow and how perfectly precious he was.  She actually started choking up about it.  'Cause it's kinda bitter sweet, how well Gregory just goes with the flow.  He's become a pro at stuff like this and I imagine that he anticipates each step, helping out along the way.  That's just how he is. 

They use intibation, with their general anesthesia.  So Gregory was tubed for this procedure.  He has never had that happen before.  I can see where the tube was taped down and they also taped his eyes shut.  He has blotchy skin and petechia where the tape was removed.  As we were waiting to be called back, it dawned on me that they would need to poke him.  They could not use his line, if they were replacing it.  Thankfully, they didn't place the IV until after he was out.  He also did not say a thing about having an IV.  When his line was originally placed, he could not wait to have the IV removed.  It was in his hand with a board securely taped to his hand.  When they removed it he aggressively helped the nurse to removed all the tape and dressings.  Once it was out, he looked up at the nurse, very sternly, pointed his finger at her and shook it with each word saying, "No... More...Pokes!"  I was worried that he would react badly to having an IV today.  Thankfully it was a non-issue. 

I also managed to get him to wear the hospital gown and a diaper.  Huge accomplishment.  Granted, the diaper was on OVER his underwear.  I didn't care.  I just didn't want him sitting in wet sheets. 

Once we were together, again, we cuddled for about an hour, he drank a juice and we were free to leave.  Except for the pain meds.  It is crucial that we know if Gregory has a fever.  Pain meds with fever reducers are not an option, for us.  The doc prescibed Liquid Oxy and the pharmacy at the hospital did not have any.  Crap.  We went to Bartell's at University Village (I called ahead to verify that they had it!) and had it filled.  We made it home and relaxed, together. 

I am learning how to pick him up.  Due to the exit being so close to the arm pit, I can't pick him up, under the shoulders.  Which really sucks.  We are doing a modified under-the-left-shoulder-right-side-botto

m/knee-scoop.  It looks and feels really akward.  He must also have some throat irritation.  He started to get a little froggy before bed and has been wheezing.  I'm hoping it is because of the intibation.  Another thing to check on, tomorrow. 

Curtis and AnnMare are coming home tomorrow from camp out.  Three days and two nights with their classmated, in the wilderness.  It is the coolest experience, ever.  I hope everyone had a great time and has some pix to share.  Please?  Sandra, thanks for sending a few of AnnMarie, you are so good at looking out for her.  You always have.  When I received tonight's pic, I was like "Skit night, already?'.

AnnMarie's sweater is "finished".  I now need to seem the arm pit holes and secure all the lose ends.  Sssshhhhh.  Dont' tell her, K? 

Alright.  I'm wraping up this entry and I'm going to go and do something else.  Not sure what, yet.  I'm a little fried.  'til later, gotta jet.

Three is the magic number. Yes it is.

I can't find an official Music Video of this.  This is one of Gregory's favorite songs.  LOVE IT!  It's from the Curious George sound track.  I love watching and listening him sing along.  He has quite the repertoire.

Today's word of the day? Different.

No more ParaFlu!  No more ParaFlu!  Which means we can proceed as originally planned.  Provided everything goes smoothly. over the next two weeks, we will begin Chemo June 2, with transplant the evening of June 10.  The bone marrow will be harvested from the donor on June 10, transported to us and transfused via IV in the evening.  I guess it is usally about 10:30 at night.  The transplant itself is rather anti-climatic.  It's a bunch of cells in an IV bag, gets attached to his central line and there you go.  The cells enter the blood stream and by the magic that is our bodies, they find their way to his bones, call it home and go to work.  The process is not immediate.  I believe it is around day 14 (transplant is known as day Zero.) we will know if it is starting to engraft.  Someone correct me if I'm wrong.  The details are escaping me, now. 

Today was blood counts, a dental exam, physical exam, nasal & rectal swab and some RN teaching time regarding his new central line.  Oh yeah.  Platelets, too.

Counts:  Hematocrit = 28.  Higher than I thought it would be.  Especially based on his mood for the last 24 or so hours.  Platelets = 27.  While they are not at transfusion level, yet, he is having his new central line place tomorrow and they will not operate with his platelets at that level.

Dental Exam:  Gregory had 8 crowns and four caps place on March 25.  The crowns are stainless steel, standard pediatric practice.  The crowns are not made and fitted specifically for each child.  They usually are too large.  I guess this is the case with Gregory.  Which means that his gums are swollen and irritated.  Perfect grounds for infection and sores.  Which means we have to really step up the dental/mouth care.  He hates it when I brush his teeth and the Peridex Mouth Rinse has alcohol in it.  His gums often bleed, too.  I also NEED to start flossing.  Gawd knows how I'm going to accomplish this.  Yet, if I don't, it means a potential serious infection.  CANNOT be having any of that.  There is also a differing of opinion between the transplant team and the dental side.  The transplant team doesn't want us to brush if there is bleeding.  The dental side wants us to continue to brush so there is not more severe bleeding, later on.  I got it.  Brush his teeth.  Period.

Nasal & Rectal Swab:  Sound bad, doesn't it.  Actually is was just a brush with a Q-Tip to the two areas.  Easy squeazy.  They do this to determine what kind of "stuff" (aka: Flora) Gregory grows as just part of his ecosystem.  They need to know, just in case any of it starts to grow out of control, they will know what kind of meds to give him, based on what he natrually grows.  Cool, huh?

Physical Exam:  No real changes.  His spleen is still enlarged.  As are his lymph nodes.  The results of his BMA reflected the same information as the previous two.  No marked progression, either.  We did not have nasal swab results, at this time.  Dr Kutny called us at 5:20 pm, while Gregory was receiving his platelets.  It was a huge sigh of relief.  Things can continue to progress.  No more limbo, please?

RN Teaching:  Man, they do things different.  Dressing changes are so simple.  So is shower time.  I DO NOT HAVE TO COVER HIS DRESSING!  I place this stretchy plastic stuff around the end of his line, to seal off the cap, and we are solid!  No more sheets of adhesive to remove everytime he gets bathed!!!  He thinks it's pretty cool, too.  "You know how to do that, Mommy?"  I will have to care for his line dressing, post surgery.  The first time, we were inpatient.  I did not have to do the immediate dressing care.  Something new.

Platelets!  Another shout out to having a rare Leukemia.  Since we receive our care at SCCA, instead of the Hem/Onc clinic at the hospital, transfusions that run into afterhours are done at Seattle Children's.  Back HomeHome, the clinic is attached/one-in-the-same as the Peds Onc Unit.  If tranfusions "hang over" into afterhours, the unit staff takes over.  HomeHome is so slick.  I guess it would be here, too, if we didn't have a rare Leukemia.  We headed over to Seattle Children's for a 5:00 transfusion.  First on the agenda was HAM.  Gregory was dying for ham and kept asking for it over and over.  Here's the thing.  He has already been started on the Immune Comprimised Diet.  HE CANNOT HAVE DELI HAM, UNLESS I BRING IT TO STEAMING, FIRST.  I thought he could have a ham sandwich from Arby's, but I wasn't sure and I have no idea where I would find one in Seattle.  Then I though that maybe Jack In The Box might have a hot ham sandwich of some kind.  AND I knew where the one on 50th is.  We headed over there and, nope, no ham.  Luckily Gregory had forgotten his fixation on ham and happily requested a "Hamburger with Cheese".  I ordered myself some tasty Moz Sticks.  Low and behold Greogory LOVED the Moz Sticks.  I gave him one and finished the rest.  He was devestated that they were all gone.  I promised we would go and get him some, on the way home.  I can't remember extactly when we got out of Seattle Children's, I think it was around 6:45.  We are leaving Jack In the Box and Gregory is asking about his sticks.  "Can I have ALL of them, Mommy?"  Me:  "Yes, darling.  You can have all of them."  Gregory:  "Really?  Mommy.  You are the BEST Mommy."  He was so pleased to get to have all of them.  We got back and settled.  Guess how many he ate?  One.  Figures.  It was so worth it, though.

We need to be at Seattle Children's at 8:45, tomorrow, for his central line change.  The pre-surgery instructions included washing him neck to toe with Hibiclins.  Strange.  They are extremely cautious.  I'm glad, it's just different.  Again.

Last night I had a very vivd dream about moving into the BMT apartment, here at Ronald McDonald House.  There is a transplant family from HomeHome that should be going home very soon and I keep hoping that RMH will move us into the apartment as soon as it is available.  Simply for convenience reasons AND it would be nice if Gregory got to see it before being admitted.  So he had an idea of where we were going, post inpatient.  I don't want him to be too displaced by having to go to yet another new location.  *shrug*  We will deal with it as it comes, I'm just manifesting a better story.

This is so wordy and yet really doesn't say much.  Alot of information, though.  Maybe I'll have time for something different, later.  I think I need to keep a small notebook handy.  I think of things I want to journal about ALL day long.  I am constantly journaling in my head.  Especially during "quiet", non-brain times.  It's a constant dialogue with all of you.  It's the main way that I stay clear and sane.  It's late and nearly an hour later.  I should start to wind it down. 

*Fierce squeeze* to each and everyone of you.  Yes, that includes you.  You, too.  The one trying to hide in the corner and look from the sidelines.  You are not on the sidelines.  We are all front and center.  Thank you for being with us. 

What about the eyelashes?

Sweet sleeper.
Originally uploaded by mindithemagnificent

I cannot count the number of times I have looked down upon this. Countless hours spent watching him sleep.

Will those eyelashes ever be the same? I know they will return, but what will they be like? What will the hair on his head look like? Different color? Different texture? Curly? Thin? Full?

He will have a whole new look in just over three weeks. While I know it will be temporary, the question of what it will be like is constant. Will it change the way I see him? The way I interact with him? So far, no one really knows how sick he is. Not for long. It will be obvious to everyone. Am I ready for the looks of pity. The repeat glances. The outright stares. The honestly curious who will ask. The compassionate eyes.

I know this. Who is IS will not change. It may shift, for a while. He will return. I'm ready for this. I'm terrified. I've got my armor on. We are battle ready.

I excessively use commas, I know this, to be true.

Today was kind of a weird day.  Gregory hit the hay waaaaaay too late, last night.  Wake up time was pretty rough for him, but I managed to get his Zofran, breakfast and meds done before heading out for clinic.  Nasal wash was done (those are not fun).  We had a food preparation class, which we attended without troubles and then a "preparing for home" class.  Gregory has been wearing a mask, ever since we arrived.  We are on respitory isolation, everyone knows it.  Whenever we are in an exam or conference room, Gregory gets to remove his mask and everyone who enters has to gown, mask and glove up.  We walked into our second class and the person running the class got all up in my face over him and his mask.  I don't know why i thought we could attend these classes together.  It didn't even dawn on me that he shouldn't be there.  This person was all "Does he have a cold?",   "He can't be in here?"  and not in a polite way.  Very abrupt and borderline rude.  In retrospect, it is probably just the way she is and had absolutely nothing to do with us.  It just felt personal, at the time.  My response was to be a little dumb founded.  I paused for a split second and said, "And the solution is...........?"  Not in a snarky tone, just kinda like "Well, if you are going to tell me I can't take this class I need, you better have an alternative."  We had an hour and a half to kill before our next appointment.  We were going to go off campus for a little bit, then it dawned on me that we might be able to get the last bit moved.  We went up to the transplant floor and the receptionist was so helpful about letting me know that I can take this class at anytime between now and hospital discharge.  They run the classes on a routine basis and I just need to show up for one.  Whew!  That is the answer I was looking for.  Our last meeting was a quick check-in with the nutritionist.  She gladly agreed to see us right then and there.  It lasted all of 15 minutes and we were outa there.

The nutritionist, Paula, told us that Gregory needs to be at 13.3 kilos (29.3).  Ugh!  He likes to be between 12.8 (28.2 pounds) and 13.2 (29 pounds) kilos.  His weight today was 13.1.  Sounds like a negligible amount, doesn't it.   Well, it's not.  I like to think of it this way, four sticks of butter is one pound.  When we checked into the hospital, post puking, Gregory was 12.4 kilos (27.3 pounds).  When we checked out on Sunday he was an even 13 kilos (28.6 pounds).  A pound and a third difference.  Five and a little more sticks of butter.  For a kid his size that's ALOT.  She also said that ideally, he really should be at 14 kilos (30.8 pounds).  Gregory has never been anywhere close to that.  He has always been a super light eater and his weight has been stable forever.  I honestly cannot remember the last time he had a growth spurt.  Which is probably related to all this, too.  How can you grow if you aren't properly producing a crucial part of your body's system?  He also is an incredibly picky eater, who eats tiny portions.  Unless it's tortilla chips and bean dip.  I think I am going to keep Frito Lay in business.  He can finish a can of bean dip in one sitting.  He did it once.  I  couldn't believe it.  He finished a can in two sittings, since we have been here.  He will not eat milkshakes, breakfast shakes, a normal portion of ice cream.  Never more than one cookie.  Never more than a handful of fries.  Never a whole McDonald's cheeseburger.  I've been beefing up his milk.  This is one thing he will drink alot of.  I add powdered milk to his whole milk.  We call it Gregory's Milk.  Here's the kicker.  Powdered milk is NON-FAT!  What?  I get it, but that means Gregory doesnt get "it".  He has always gotten whatever he wants to eat, whenever he wants it.  Now I just need to try and find high fat/calorie foods that he will eat.

He's been awfully irritable, tonight.  Not quite sure why and he's been tossing, turning and crying/complaining in his sleep.  I hope it is transitory.  He's been off the 6mp for two weeks, now and I'm curious to see what his numbers are doing.  It could simply be that he could use a Red Cell Transfusion.  We will know, tomorrow. 

Things are proceeding.  He will have his central line changed out on Thursday.  He will have a doulbe lumen, instead of a single. 

I left a message for Jennifer at Ped Onc back HomeHome and she very kindly forwarded me the update that she sent around to the staff.  It was cool to see that this is the way they handle long distance updates.  I've noticed another difference between clinic at HomeHome and SCCA.  In Spokane, I always felt like an outsider and kind of a poser.  Yes, Gregory has cancer, but we were not actively undergoing treatment.  I didn't feel like we were part of the club.  I didn't have treatment stories to share or similar experiences.  Just a diagnosis and a future plan.  Don't get me wrong.  We were actively managing his cancer.  I am acutely aware of THAT fact.  Over here, it's completly different.  While completely the same.  We are actively pursuing treatment, but we are surround by adult patients.  I have never experienced so much rubber-necking.  (Even in my early 20's, ha ha!)  The sight of this little, masked, munchkin of delight throws everyone a little off.  It's my understanding that JMML is mostly diagnosed prior to 12 months of age.  I don't know the statistics for Gregory's age group and BMT.  I would be curious to see the age breakdown.  Needless to say, he is a very rare specimen.  It's a good thing he is OK with all the attention.  I can't decide though, what gets the attention more.  'Cause everytime someone interacts with him it's, "Oh!!  Isn't he/Aren't you cute!!  And I LOVE your sweater!"  These two compliments are never far apart.  Truth be told, I love it.  I had nothing to do with his cuteness, but I DID make the sweater. 

I'm fairly certain I'll be back on here, tonight.  I've got more clammoring around.  I post pictures daily, here. 

I need to do a thank you post, soon.  Please know that I hold ALL of you in my heart.  'til later, gotta jet!

It's raining positive juju!

We are getting ready to head to clinic.  I  have two caregiver classes, Gregory has a dental appointment and THE NASAL WASH!  We are manifesting a negative result without any other complications.  Help, please?  Thank you very much!

Yesterday was a big fat nothing.  Felt gooooood.  A few of you have asked if you could send Toy Story stuff.  Sorry I have not had the opportunity to get back with each of you.  Please, certainly send what you might have lying around and are willing to part with.  Multiples are not an issue.  If Gregory gets tired of them, I can always pass them along to another kid who would love and cherish them.  I have updated The Greginator welcome page to reflect our current address.

I can't remember if I  mentioned this or not, SCCA transfuses blood products at a different level than Spokane.  Gregory doesn't get platelets until they hit 10  (Saturday they were at 68), with Red blood cells at a hematocrit of 27 (Saturday it was 29).  I have a feeling we will be experiencing a red cell transfusion at SCCA this week.  Maybe even today.  Note to self:  Throw some activities in the car!!!  For both of us!

Well, I need to get the munchin up so we can boogie.  Gotta jet.

Home = RMH ~ HomeHome = Spokane

What were you doing 29 years ago, today?  Me?  Raking grass clippings with the family, my uncle was over for a visit, watching the black clouds roll in. 

We are home!  I think we have the upset tummy solved.  For now.  I have been pre-dosing him with Zofran.  Then giving him his meds about 45 minutes later.  It seems to be working.  *crosses fingers*  When we got home, he chowed down and drank a ton.  It's great to see him eating with gusto.

Do you know how wonderful it is to meet people who are open and willing to discuss their Odyssey's?  It's pretty rare, I'll tell you that.  Most folks are quiet, private and guarded.  I get it.  Kinda.  I want to hear, absorb, comfort, share and lift each other.  All experiences are different.  Mostly, the emotions are the same.  I want friendly faces.  Familiar faces.  I have a feeling that my greatest community is going to come from our in-patient stay and the staff at SCCA.  I'm trying to forge those bonds. 

MY CAR ARRIVED TODAY!!!  Dad dropped it off on his way to his job.  I've never been happier to see an automobile.  Something that is mine.  Another piece of home and familiarity.  On the way home from the hospital, we located the neighborhood McDonald's.  Gregory was quite happy to see it. 

We have a day to veg, tomorrow.  Then back to appointments for Tuesday, Wednesday and Thursday.  Still manifiesting a negative nasal wash for Tuesday. 

Sitting in our hospital room today, I was struck, again, with the overwhelming enormity of what we are doing.  While I plan ahead, I really don't rely on those plans.  It is literally getting through each moment.  The next vital check.  The next blood count.  The next full day.  When I step back and try to see it in it's entirety, it takes my breath away.  Living moment to moment is a self preservation mechanism.  I am an upbeat positive person.  I KNOW I can make it through the next hour or two.  Beyond that, my confidence starts to waver.  So I don't think about it.  Too much.  Unless it is in clinical terms.  This-then-this-then-that.........  Being here.  Alone with Gregory, allows me to be clear headed and focused.  Quite frankly, trying to juggle everything at home was doing me in.  I have no idea how Larry is truly holding up.  No matter what, he will buckle down, get the job done and handle the homehome front.  I just hope that our homecoming goes smoothly.  No need to worry about that, yet.  We need to get there, first. 

I spent too much time tonight messing around with GoodReads.  Thanks, Yvonne!!  I am always looking for book recommendations.  If any of you are on it, THIS is me!


Read, knit, movie, sleep????    Not sure, yet.  I am signing off, though.  'til later, Gotta jet.

Getting to know you......

Ummmm.  Outside time and pizza didn't happen.  Gregory had a belly ache about 11:00, had a zofran and promptly fell asleep.  He slept until about 4:00, had belly cramps, again.  Another Zofran.  Followed by throwing up and belly cramps for the next several hours.  I called the after hours line around 6:15 and we were told to come in.  He had next to nothing to eat/drink all day.  We were coming upon the shift change and they needed to find us a room.  We were told to check in at 8:30.  He was very lethargic and continued to heave.  When we got here, his blood pressure was 98/44.  Awfully low, for him.  He's had fluids and rest.  He perked up about 45 minutes ago, ate a few Chocolate Teddy Grahams and had some apple juice.  We are still unsure of what is causing his belly troubles.  All tests are coming out negative.  We skipped meds tonight and will have them tomorrow morning.  With a Zofran pre-dose.  I'm hoping that this solves the problem. 

At least we have been able to check out the unit, prior to Chemo/Transplant.  The exciting thing is that we get to hand pick our core nursing staff.  I've already met two nurses that I really click with.  We met Lisa last night and she's pretty awesome sauce.  Our admit nurse tonight, Sussane, rocks too.  I have no idea how they make it happen, but it's pretty cool.  Now Gregory will have a point of reference that is somewhat positive, prior to treatment.  That's cool, too.

As is the case everywhere, Gregory has charmed to socks off everyone.  Oh yeah, he oficially wears an allergy bracelet, now.  His "paradoxically reaction" to Versed has earned him this right.  He's a two bracelet kid, now.  We have also discovered the ever-so-convenient single serve Tillamook Cheddar cheese slice.  So cool.  Cheddar cheese is one of Gregory's favorites.  Yet he will not eat cheese slices from the sandwich fixin's.  These are perfect.  So.  Those of you that are helping to offset our resource consumption?  The quanity of single serve garbage had dramatically increased.  Wasting food is just too frustrating.  Single serves are the way to go, for now.  Thank you for working extra hard to help us out with this.

Another fun thing.  Mom made Gregory and I a ton of fun, flannel pillow cases.  It's nice to see him reclining on something personal, instead of institutional white.  He is currently trying to get back to sleep.  I'll be following him, soon.  Cuddling up next to him is one of the greatest things on this planet. 

A few things about the rooms: 
Only patients can use the restroom, in the room.  (bummer!)
The IV pumps are huge.  Also?  You cannot hear them pump.  A nice bonus.
Temperatures are taken in Celsius.  Crap.  Now I get to learn a new system. *shrug*
There is a huge white board on the bathroom door for communication. 
Food is done differently, too.  If I'm correct, you order it when you (Gregory) needs it.  You are not subject to mass delivery times and a standard tray.  You could order it in Spokane, but you had to remember deadlines. 

I'm starting to yawn and Gregory is getting ready, too.  'til later, Gotta jet.

Zofran is filled with magic and wonder.

It is a glorious day in Seattle.  Sunshine and warmth.  These are the days to live for.  It was so luxurious to wake up this morning without the need to get somewhere!  We have been lounging around.  Gregory had a little bit of breakfast and his morning meds.  About an hour and a half, after taking them, his stomach started to cramp up.  Thankfully we were sent home with some Zofran last night!!  I gave him one and he promptly fell soundly asleep with no cramping.  This experience is a delicate dance of getting the correct combination of medications he NEEDS to have and others to combat side effects.  When we met with the Pharmacist, yesterday, she mentioned that post-transplant, Gregory will probably be on 8-12 different medications, IV/nG tube nutrition and IV Fluids.  Mom and dad left last night to head homehome.  I am at my best when I can fully focus on just Gregory and I.  It's not because the presence of other people bother me.  It's simply that I feel obligated to look out for others around me.  I've tried to let that go and it is something I just cannot do.  An occasional visit is totally OK.  A 24 hour presence is challenging for me.  Just a little quirk of mine.

I'm hoping that Gregory feels better, later today.  I'm looking forward to a little outside time with him and pizza delivery.

Gregory is zonked out now, trying to catch up on the last few days of activity and adaptation.  Quite frankly, it's heaven.  'til later, Gotta jet.

We visited the SCCA unit at Children's.

Whew!  What was supposed to be an easy squeasy day kinda got ugly.  We had an orientation meeting with an RN, a meeting with the pharmacist and a meeting with the research coordinator.  We were done and out of there by 11:30.  Mom, Gregory and I hit the grocery store and Office Depot.  I needed groceries and picked up a LONG Ethernet cord.  I am no longer tied to the desk!!!  While we were checking out at the grocery store, Gregory started getting sick.  Tired, lethargic and just yucky feeling.  By the time I loaded him in the car, he up-chucked.  We boogied back to our "home" and he threw up again.  He layed in the bed and occasionally moaned, tried to fall asleep.  This cycle happened twice more, about two hours apart, each.  Phone calls were made to clinic.  At 6:00pm we got the word that we needed to go to the hospital.  We went straight to the SCCA floor.  He continued to dry heave.  After IV fluids, blood draw, urine analysis and a belly x-ray, there was nothing to report.  He received a dose of Zofran, dry heaved twice more and slept it off.  I really did not want to be admitted.  He finally perked up a little, went potty and we were sent home with Zofran (yay!!!!!) and directions to keep an eye out for symptoms.  We got home about 1:00.  We are finally settled in and so ready to chill.  Chilling is ensuing.  We don't have to be at clinic until TUESDAY!!  A mini break.  Much needed.

We found out today, that Gregory still has parainfulenza virus type III.  This was confirmed through his nasal wash on Tuesday.  They will be repeating the wash on Tuesday the 19th.  If he still has the virus, transplant will be postponed until he is clear of this virus.  We could use some good juju.  He needs a negative nasal wash on Tuesday and to remain healthy for transplant and beyond.  Thanks, everyone.

I'm absolutely beat.  Time to cuddle and rest.  Over the next three days, I'll be pretty prolific.  You've been forewarned!  Love to you all, until tomorrow.  Er, later today!

Super Trouper beams are gonna blind me.

I sat down to journal, several times tonight.  There is so much going through my head, I had no idea where to start.  Wednesday was so much better than Tuesday.  There was a little familiarity with the clinic and staff.  Gregory was more comfortable, too.  It took a little negotiating to get him to wear his mask at all times, but he is cooperating brilliantly.  Yesterday I sat down with the team and we talked broad brush strokes about his treatment plan.  Once all the results are back and the team gets a chance to review everything, we will meet again and put the final rubber stamp to it.  We are targeting June 2 for admit/chemo.  A few highlights:

This chemo is brutal.  Thankfully it is short and a "one" time thing.  Six days. 
Major to Minor lung difficulties are an issue.
Major to Minor Liver difficulties are an issue.
There is a strong likelihood that he will be infertile.
He has started the first of his medications.  He is on twice daily Bactrim for specific bacterial stuff and Ursodiol, twice daily,  to beef up the bile in his liver, in preparation for chemo.  He will received TPN post transplant, via his central line.  We still need to get his central line changed from a single lumen to a double.  Today we had a blood draw, Bone Marrow aspiration, Lumbar Puncture, Echo and chest x-ray.  The last few days have been really hard on him.  He came out of today's sedation, really hard.  They scooted us out of the room and instead of being able to go home and chill, we still had the Echo and x-ray to get done.  He eventually rallied, but it was hard.  Tip of the iceberg, I know. 

The car situation is handled and I  should have it by Sunday pm.  Yay!  Independence.

I have so many thoughts on this experience, so far.  They are going to have to wait, a bit.  I'm looking forward to having some time with just Gregory and I.  He and I have been attached at the hip, ever since February 23rd and we have developed a great symbiosis.  It's selfish, I know.  I can't rationalize it.  It just works for he and I.

I fall in love with this town, everytime.  The biggest impression, so far, is the beauty of it's diversity.  I love it.  I have to admit the lack of diversity is one of the biggest downfalls of Spokane.  Some people may believe that it is more diverse, than it used to be.  It is segmented.  It's not diverse.  I love the fact that anything goes, here.  Pretty much without question.  Which again brings me to think other people's experiences.  I embrace the "different" and diverse.  I cannot imagine coming from a small town and experience this.  Fresh.  New.  Not ever having been exposed to it.  It has to be so overwhelming.  Which is why I  don't think I will find many families that are ready to dive into long conversations.  Everyone is trying to process every step of their own Odyssey.  From diagnosis to displacement to treatment to recovery. 

In the big picture, our treatment is pretty short.  It's the recovery that is huge.  Gregory was started on the immunosuppressived diet.  Some of the major items of concern:  All fresh fruit/vegies must be hand washed.  All items that are not cooked, must be shelf stable.  No deli type/refidgerator case items.  No buffets.  Meat MUST be cooked to well done.  Basically we are avoiding ANY kind of bacteria/mold/fungus that could be hanging out in his food.  All of it.  He will not have the ability to fight off the stuff that you and I don't even realize our body takes care of for us.  Which means, in order for me to feel comfortable with what he is putting in his body, he will only have food prepared by me.  He can only have municipal water.  Bottled water is OK, if it came from a municipal water source.  All milk products must be pasturized.  Same with eggs.  No more farm fresh eggs.  If he wants lettuce, I need to wash each leaf.  Deli lunch meats and hot dogs MUST be cooked to steaming, before consumption.  It's a good thing I used to work food service.  There can be no cross contamination.  His meals must be prepared in the utmost of cleanliness.  Can I remember how to properly pack a fridge?  You bet.  You won't find fruit/veggies/cheese in my fridge drawers, anymore.  That will be reserved for eggs and raw meats. 

I have a caregiver class, meeting with pharmacist and the research RN, tomorrow.  Quick day, actually.  We are scheduled to be done by 11:30.  Unless, of course, we get something else.  We did get the OK for him to visit the Zoo, prior to admit.  I'm hoping to do that next week.  I'm really looking forward to it. 

Well.   My writting well is about dry, for now.  I'll get into it more, at a later time.  'til then, love to you all.  Thank you for all of your messages.  There are several of you I  haven't gotten back with, yet.  Saturday is the day I'm planning on catching up on my "two way" conversation.  We won't be going anywhere and I'lll have the time and energy. 

May 14, 2009

Got the car handled! Thanks, everyone!

I need help, please.

My car is stuck in Spokane and I need it by early Friday the 15th. I had arrangements for it to be here, but it is not going to work out. This is the dilemma. Who ever is able to bring it to me will need to find their own lodging and get themselves home. My mom could bring you home on Friday, if that is needed. If anyone is able to do this, drop me a line or call me. 509-701-0338. Sorry for the short notice, I know this is alot to ask, but I figured I would start with you all first. Thanks in advance. I'll update, properly, later. ♥

Gregory, I have a feeling we aren't in Kansas anymore.

Holy cow are we spoiled in Spokane.

All of our out-patient care is conducted at SCCA (Seattle Cancer Care Alliance), which is affiliated with The Hutch, on The Hutch campus. We had our first day of stuff at SCCA, today. The place is BUSY! Crowded, cramped, small spaces. I had a general feeling of over stimulation. Today we had general registration, history, physical, exam, vitals, blood draw, meeting the Attending and Primary docs. General orientation, tour. A HUGE blood draw.

Everything is located on different floors, too. Lab on one, transfusions on another and clinic on yet another. The major difference is that this is not strictly pediatric. That is what is so......... adult cancer is so different. I think we saw one other pediatric patient, today. The transplant staff is divided into teams. There are 10 (ten) Adult Transplant teams. How many pediatric teams? 1 (ONE) Soak that up for a minute. One. Walking into the peds onc clinic at Sacred Heart Childrens is so awesome. We have left Kansas. Which does not change our level of care. I will grow attached to it. It will find it's way into my being and take root. It will just take a little longer. I was thinking about our long distance treatment, the other day and I am grateful that Gregory's intense treatment will occur away from our home hospital. This experience has been removed from all that he knows as home and comfort. There will be limited PTSD type reactions with Sacred Heart Children's. We will do our long term follow up there and I'm glad it will remain a place of comfort for him. These experiences get to stay at this location.

The Greginator is a hero.  You already knew that, though.

Todays counts!!!!!!!!!!! Man, the lab at SCCA is FAST! Hematocrit: 31 / Platelets: 40 / White Cells: 9.46 / Red Cells: 4.12
His counts are increasing. Not quite sure what this means. I don't know if it is because his system is still working overtime due to the lingering bronchitis. *shrug* Somethings just will not have an explanation. They simply are what they are. His bronchitis is still hanging on, therefore we are back on respiratory isolation. Which I'm OK with. It almost elliminates his contact with bacteria/virus/fungus. It's just too risky. It also means that we are able to eat in our room. You may think that I am nuts to WANT to be isolated. This is so different. This is for Gregory's life. Plain and simple. Pushing the edge of the envelope is not called for, at this time.

Today was long. Tomorrow will be longer. Thursday even longer, still.

Tomorrow: Slated time frame 8:30 arrival at SCCA ~ hopefully complete by 4:15
8:30 ~ Finance Meeting
9:00 ~ Meet with Social Worker (SCCA social worker)
10:00 ~ Meet with Child Life (SCCA child life)
11:00 ~ EKG
12:30 ~ Meet with SCCA nutritionist
2:15 ~ Conference with Dr W & Dr K (attending & primary care)
Oh yeah, we will have a platelet transfusion squeezed in here, too. Somewhere. Somehow.

Thursday:
8:00 Blood draw at SCCA
9:00 ~ Children's Hospital. Bone Marrow Aspiration and Lumbar Puncture under sedation
? ~ Children's Hospital. Chest X-Ray
12:30 ~ Children's Hospital. Echocardiogram

Friday:
9:00 ~ Caregiver classes for me.
10:00 ~ Meet with pharmacist.
11:00 ~ Meet with research RN.

Crazy. Crazy. Crazy. Remember Gregory is 3. (nearly 4) I think Child Life and I are going to be fast friends.

I've gotten my bearings. We have staked out grocery stores, pharmacies, amenities. Still looking for Local Yarn Shop. Of note:  Yami is in the grocery store!!  Better yet, Yami was on the shelf at the "bistro" at SCCA!!!!!!!!! 

I'm sure I've left some holes. Let me know if you have questions. They help me to fill in the blanks.

Thanks tonight are in honor of Sacred Heart Children's Peds Onc Unit & Clinic, again. Can't wait to get home, folks. (I'm not impatient, I just really love everything about you all!)



Psst:  Depeche Mode is performing at Key Arena on August 10. 

How to find us!

Alright, y'all!!  Here's our address.  Something to note, anything mailed should included Gregory's name in the address.  We are registered under his name.

The Greginator
Gregory Bibb
5130 40th Ave NE, #267
Seattle, WA   98105

mindithemagnificent@yahoo.com

Miss Mary will be bringing me my car late Thursday night.  If there is anything that can be sent over with her, that's an option as well.  Sending stuff home with the OffSpring works, too.  I'll post this address in my opening entry, too.  We need to get ready to leave, so I'll get to it later. 

Love to everyone!

Seattle ~ How do I love thee?

I have absolutely no idea where to start.  The last few days have been..........  (you fill in the blank and you are probably correct).

We have arrived in Seattle and are settling in to  our accommodations at the Ronald McDonald House.  It's a perfect location.  Super close to most things we will need.  I expect to be in our room until we are admitted for Chemo/Transplant.  Hopefully we will be able to re-locate to our BMT apartment at that time.  There are a couple bummers.  We are not allowed to have food/drink in our rooms.  I understand this.  Totally.  Yet, it kinda sucks.  Especially when I NEED my coffee first thing in the AM.  I'm also nervous about exposing Gregory to too many germs/bacteria/virus/fungus in the common areas.  Despite how careful everyone can be, It's not an area I can control 100%.  We will see what they have to say at The Hutch.  If they feel he should be isolated, we can receive permission to eat in our room.  The room is set up like a hotel room.  Pix will follow.  Just not tonight. 

Gregory was so cute, tonight.  We went down to the kitchen/eating floor and munched on some popcorn.  There were a couple little girls playing and he very proudly lifted up his shirt and exclaimed, "I have a central line."  It's amazing how this whole thing is just part of who he is.  The next few days will really test his ability to adapt.  He will be meeting a whole new crew of caretakers and experiencing new tests in unfamiliar surroundings.  My job, for now, is to make him feel as comfortable, loved and protected as possible. 

Larry's grandfather passed away, today.  That's all I'm going to say about that.

I will be posting contact info and a local address.  I do have a small plea.  Gregory is currently REALLY  into Toy Story and Toy Story 2.  If any of you should come across any "vintage" (can it be considered Vintage) Toy Story items, specifically the characters, I would be forever grateful.  He is enamoured with all the characters.  I would gladly reimburse anyone who can find them.  They are not easy to come by.  Second hand is totally OK, too.  I have a feeling that this chapter in our lives will forever be remembered through Toy Story.  Not a bad memory, if you ask me.

On Sunday, Curtis and I spent a few hours bowling.  This was our "special time" together, before I left.  While we were there, I forgot my camera.  I didn't realize it, until  I went to charge it at 12:00 last night.  I panicked!!!!!!!!!!!!  It was a christmas gift from Larry, this last year and it is by far, the nicest camera I have ever owned.  Before we left town, we stopped by "Big Daddy's".  Thankfully someone was there and he was more than happy to let me in, before opening.  Did you play the cancer card, you ask?  Of course!  Against all odds, the camera was found by an honest person and I am giddy that it is once again, in my posession.  One giant Whew!!  Can you imagine how boring this Odyssey would be without a pictoral?

The OffSpring and I have started our nightly phone calls.  This is gonna be weird.  Our family dynamic is changing, rapidly.  My goal is to ask these four questions, every night:

What do you have to tell me?
Do you have any questions?
What was the best part of your day?
What was the worst?

I'd also like to try and journal a good portion of their responses.  Tonight I wasn't on the ball and I can't remember what their responses were.  Curtis did ask me when they wrere going to start "full blown' chemo.  This has been a common concern of his.  He also informed me that his skinned knee is doing "remarkably well".  This experience is changing the way the Curtis and I react.  Which is really good.  If it brings about a dialogue, how sweet that would be.  I have a really hard time talking with Curtis.  Not quite sure what that is all about, I have my theories, none of them very self flatering.  I think the first born is the breeding gound for Trial and Error.  Two gets the self corrects.  Three gets the sweet nothings of being last. 

Sweet nothing is Gregory.  How this little boy has softened my heart. 

I have not been very good about two way communications, lately.  Please know that I have received ALL of your words and vibes.  I'm just really "full" right now.  Trying to keep my head above the water, find time to breathe and give what I can, when I can.  You are all deeply rooted in my being.  I take everyone of you with me. 

Common things I would really like to take part in:

• Star Trek!  I hear it is awesome.  Definatley a must own, when I comes to DVD.
• Looking forward to Tek Trek.  Much luck and fun to all of you participating, this year.
• Preparing Curtis and AnnMarie for campout.  This is AnnMarie's first year and Curtis' first year in Upper El.  Please watch out for them, this year.  Any touch stones that can be there for them, will make a world of difference.
• Welcoming new Montessori families.  I  hear you guys had a rockin' New Family Orientation.  I'm so proud of all of you.

Larry is busy at home, keeping the home fires lit.  Thank you.  I realize how difficult this is and what it means.

We begin with a clinic visit, tomorrow.  Know what I'm looking forward to?  Blood counts.  He's been off his 6MP since early last week.  Last counts were on Wednesday.  If I remember correctly his Platelets were at 33 and his Hematocrit was at 26.  I'm anxious to see where he is at.  Wednesday we meet with the first doc and testing begins, after that.  I'll have e better idea of time line, hopefully by the end of this week.  Of course, nothing is set in stone.  It's all fluid.

Totally random:  I lived in the U-District for three years.  Driving down 45th, today, I did not remember feeling so crowded.  At the time it felt so huge and open.  Today it felt small and crowded.  Not in an uncomfortable way, but more like it was a play set, from childhood.  I think it is mainly due to the fact that I didn't own a car at the time.  All my experiences were on foot.  We will see.

I'm looking forward to meeting some families.  Amy and Gregory, this includes you, too.  If you are up for visitors.

I think it's time to close this, for now.  I'm starting to ramble.  Thanks again, everyone.  A new begining.  Are you all ready for this?  It's gonna be wild and wooley.  Sweet and sorrowful.  We are warriors, don't forget.  Hear us roar!!!!!!!!!!! 

irandom

Can I  tell you something?  The last few days have been STRESSFUL! 

Just a quick post to let you all know that we are still a go for Monday.  Meanwhile, I'm running around, trying to get everything organized and still be "Mom".  Trying to say all my goodbyes.  Trying to knit.  Packing for four months is daunting.  I've got piles of stuff all over the house.  'Cause there is you just can't pack it all and be good.  You still need to use some of that stuff.  Clothes, toys, toiletries, IV supplies, electronics, yarn, mobile office, art supplies, pillows, blankets, Gregory's eating tray, potty seat and stool.......  It's not like I can't pick stuff up if I forget.  It's that we are going to be away from home and I want some of my and Gregory's creature comforts, in order to make it feel a LITTLE  like home.  I like my creature comforts and if I can take it with me, I will.  So there.

Larry's 92 year old grandfather is not doing well.  He went to see him today, quite a distance away, just in case he didn't have another opportunity.  I'd like to say "When", please.

Curtis was riding his bike today and bit it hard on the pavement/gravel.  His knee looks like hamburger meat.  I  was a little worried about infection and Larry wasn't home, yet, to look after the other two OffSpring.  I started calling around for an assist and got a hold of Larry.  He was not far from home, took one look at it and said it was OK.  Huh?  I had washed it with Hibiclins and dressed it.  I hope it doesn't get infected, it looks pretty ugly. 

I've made the monumental decision that AnnMarie is going to get her sweater, when she gets it.  I've been obsessing over it and my stomach is telling me to STOP!  I feel good about it.  She will have it shortly, just not before Monday.  I can't do it, nor will I push myself too hard. 

I feel like this entry needs to be bulleted.  I'll post again, when I have more coherent thoughts.  Gotta jet. 

Love to you all!!!!  Yes, that includes you, too.

ETA:  I'm on Skype now.  Mom set us up with a web cam.  My username?  Three guesses and the first two don't count.

MindiTheMagnificent

Give me a shout out with your info or simply add me to yours.  Who knows?  We might get to have an actual TWO  WAY conversation.  Novel idea, huh!

Is this really my dinning table?

Is this really my dinning table?
Originally uploaded by mindithemagnificent

One of the many things I needed to accomplish, was sorting, verifying and creating dressing change packets for Gregory's Central Line. I like to pack the necessary supplies in kits, so I can just grab one. His line is flushed once a day with saline and the dressing covering the line is changed once a week. This is just the tip of the iceberg. The supplies we will be coming home with will be baffling.

Puts a different spin on King Henry VIII

his morning.

Curtis:  "Mommy, what's in your DVD player?"

Me:  "The Tudor's"

AnnMarie:  "Tooters.  *chuckle, chuckle*  Tooters."

All three of us:  *large belly laughs*



Also?  Curtis just casually used the word "crap" in reference to dog doo, realized I heard and looked at me absolutely mortified and said, "Oops!  I forgot, it just slipped out.  Is it OK to say it?"

homecoming: n 1. A Return Home

I'm home.  I'm home.  I'm home.  Gregory is too.  So is the rest of the family. 

We were cut loose about 12:30, today.  When you finally get the all clear, I tell you, you cannot get out of there fast enough.  It seemed like the elevators took forever and there was a huge wait, to pick up his RX.  We finally left about 1:30.  I was able to say good bye to a few people, but we haven't been inpatient much, so there was not many that really knew us.  I meant to say bye to you, too, Jess.  I just wanted to get home.  Walking into the house today was different from the other times.  I've made my peace with this part of the Odyssey and it just felt safe to be here.  One thing I do need to remember is this:  Upon coming home from an admit, let the other stuff slide for an hour or so.  Go grab Gregory and cuddle on the couch together.  For at lest an hour.  Re-set yourselves.  Make like broccoli and veg. 

Curtis and AnnMarie got home not long after we did.  Curtis almost started crying when he saw me.  He gave me the biggest hug.  One of those really long and comforting kind.  He did not leave my side for about an hour after they got home.  AnnMarie squeezed me, then we all cuddled together on the couch.  At one point, Curtis was on my right, AnnMarie was on my left and Gregory was in my lap.  It was an OffSpring blanket. 

Everything is a go for Seattle.  Gregory came home with an RX for Zithromax.  His 6MP (low dose chemo) has been discontinued.  According to Dr R, his numbers are where we want them and he does not want him any more compromised than he already is, going into this.  Especially with the surgery for his Central Line.  There was further talk about his spleen, today.  Apparantly his platelets are staying fairly stable due to his spleen.  Not quite sure what that means.  I have a whole list of questions for The Hutch team.  Team it is, too.  Afterall, it is primarily a research facility.  We will have a new doc every month of our stay.  They each spend a months rotation at the hospital.  The balance ot their time is at the research center.  I'm prepared to have a whole crew of people to get to know. 

I've got the sleeves attached to the body of AnnMarie's sweater.  I'm working on the shoulders, now.  I'm pretty sure she will have a sweater to wear to school on Monday.  Note to self:  When washing a washable hand-knit item, especially when the quality of the yarn is not so good (actually ALL the time, for safe measure), turn the blasted thing INDSIDE OUT!  I washed Gregory's sweater and it is super fuzzy, now.  It was my first sweater, I wasn't sure how it would turn out and I didn't think the size would fit for very long.  Therefore I used a mid-quality yarn.  It has acrylic in it.  If I'm going to spend that much time making an item, I want it to last and at least look semi decent.  While it's not terrible looking, I know it could look better.  I knew I would be making another one for him, I just didn't think it would be on my radar so early.  I would like the next one to be oranges, reds and yellows.  Yes, I think about knitting constantly.  I'm trying to scale down the amount of yarn that I will be taking with me, but I just don't see that happening.  After all, what if?

Tick tock, tick tock.  Time keeps on slippin'....... 

Thank you's for today:

Jess ~ Thanks for fullfilling my frantic request for scrap yarn!!  Question:  Did that ball come wound like that or did you wind it that way?  If you wound it that way ~  Cool! 

Peds Onc Clinic, Ped Onc, Candlelighters, Child Life Specialists, Sacred Heart employees in general ~  Thank you for making the first part of our Odyssey so pleasant, warm, joyful and inclusive.  We will be changed people, the next time you see us.  Watch out.  We are warriors.  Roar with us.

Dr R ~ Here's a cliche for you.  There are no words to express the depth of what I have to express to you.  I know you get it, so I will leave it at this.  Thank you.  You lead a mean tribe.  Looking forward to seeing the gleam in your eyes, upon our return.

Gregory's BMA slides.

Gregory's BMA slides.
Originally uploaded by mindithemagnificent

Pretty cool, huh? Seattle Cancer Care Alliance asked for the slides from Gregory's Bone Marrow Aspirations. I get to be the one to transport them over there. That stuff is actually Gregory's Bone Marrow sample. Stained and ready for interpretation. Amazing.

It's hard to believe this insanty..............

So here's the deal.  Inside these walls, every little thing that happens is normal.  While it's not handled in a cavalier way, it simply is.  Being here is comfortable.  There is fantastic staff to help you along every step of the way.  There is even community.  From the Candlelighter's crew, the Child Life Specialist, the Social Work staff to even fellow families.  Even if our diagnosis are different, we are all fighting for the life of our children.  Stepping outside can sometimes be scary.  The few times I have taken Gregory to the grocery store, I now use those anti-bacterial wipes that are at the front of the store.  I scrub down the cart before he even touches it.  I'm sure people walking by think I'm a wack job.  Thinking about our trip and discussing it HERE, within these walls,  has renewed my hope and excitement.  I have that "first day of school jitters" feeling.  While I am acutely aware of what we have ahead, I'm excited.  I've been re-programming myself to treat this as an adventure.  The only part that gets me down, is the balance of my family that gets left in the out-field.  Left to try and cope.  Left to try and understand and experience it, through us.  I feel awfully luxurious in my ability to be with Gregory 100%.  If I had to stay home and Larry went, I think I would truly turn psychotic.  Don't think for a minute that I take Larry or my mom for granted.  They both are sacrificing so much, in order for me to do this.  While there really is not another alternative, I am deeply grateful for their support.  Even though Larry and the other OffSpring won't be there, we are all fighting this beast.  Together and with resolve. 

Every once in a while, I get a wave of "whoa!  This is HUGE!".  We are trying to save Gregory's life.  Plain and simple.  We have a proven plan of action.  We are on our way.

Good news!:  Gregory had a slice of ham, 2/3 of a small bag of chips and about 6 ounces of fluids.  Yay!  Departure tomorrow looks good, so far.  He had a shower tonight and we cuddled while he fell asleep.  He so tenderly, reaches out, around my neck to nuzzle as he falls asleep.  There is nothing sweeter. 

Time to do some knitting and watch The Tudors.  G'night, all.  Go, give your kids a kiss.  Even if they are teenagers, those sleeping foreheads can use it.  Gotta jet.

*ETA:  Bonus points if you can guess my lyric.  Also, web searches are an automatic disqualification.  Even if I don't know, you will.