Just in case....

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Twitter: username: MommaMindi11
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Dirty Dinah ~ Dante the Destroyer

Poll #1375263 What's in a name?

Open to: All, detailed results viewable to: All, participants: 10? the Dyson

View Answers
Dianah
4 (40.0%)
Dante
4 (40.0%)
What are we naming??
1 (10.0%)
I have a better name! (Leave in a comment, Please!)
1 (10.0%)
You are one weird chick.
2 (20.0%)

Yesterday & Today

Yesterday contained visitors!!

Miss Rebecca: Thank you so much for the things for the OffSpring and the Pedicure Gift Certificates for AnnMarie and I. Also? Can't wait to try the meals. They will certainly be handy on LONG transfusion days. Seeing your smiling face brightened up my day. ♥


Kirista!!!!!!!!!!  Thanks for hangin' with the OffSpring.  They really enjoyed it and it was fun to watch them with you.  Also?  The laundry detergent, perfect timing.  Willow, thanks for sparing her.  I hope I get to see you sooner or later, too.

Yesterday morning was an off morning.  A little bit of the blues.  Plenty of exhaustion last week caught up with me.  I've used my vaccuum at least once each day.  I LOVE it.  It's made keeping tidy a breeze.  If only laundry & dishes could be streamlined!

Today would be called a wee bit of normal.  The red blood cells that Gregory received on Friday have worked wonders.  Gregory has been so stinkin' happy, loving and active.  Today he got a haircut, picked out food at the grocery store and we looked at Yarn at JoAnn's.  (TOO much acryilic for my tastes.  Also, not enough JEWEL tones!)  He fell asleep on the way home and napped, once we were home, for quite some time.  Too long, actually.  It's nearly 11:00 and he's still bright eyed and bushy tailed. 

Montessori Lori:  That was some of THE  BEST spaghetti sauce.  EVER.  Everyone scarfed it up, with plenty to stick in the freezer.  Thanks, as always.  From one C-Beast family to another.

Tomorrow work, Tuesday work and blood counts on Wednesday.  I think this is going to be a good week.  Which is great timing, with the other OffSpring off for Spring Break.

I leave you with today in pictures.  See how happy he is?  Also, the haircut made a huge difference.  I can see his gorgeous eyes, again.  Gotta jet.

Morgan, Parker, Skyler.....

To our middle-of-the-night readers, I fell asleep with Gregory and didn't update at my usual time.  We are OK, Mr Sandman had other plans for me.

Today.  Well, technically, yesterday.  We had blood counts.  Gregory's appointment was at 9:40.  We got home at 7:30.  You never can tell what is going to happen on appointment days.  As mentioned before, Gregory's hematocrit has been declining.  Today it was at 21.  Which meant it was time for some red blood cells.  Having never received a transfusion of red blood cells before, I didn't know what to expect.  Platelets are quick.  Comparatively.  Once it's been decided that a transfusion is needed, they need to "type and cross" what ever it is he needs.  Which means that they take some of his blood, some of the donor "whatever", mix a little together and make sure that they don't coagulate.  I'm not sure if the tests are done onsite or at the blood bank.  All I know, is that it takes time.  The decision to transfuse was made at about 11:30.  The transfusion began at 3:00.  Platelets can be hung on an IV pole and gravity takes over.  It's quick.  Red blood cells are attached to an IV pump and the rate is controlled.  It takes 3-4 hours.  Since we knew it would be some time before the transufsion would be ready, Gregory ran out and grabbed him something to eat and a little treat from Hastings.  (local music/books/movie store)  They also have a pretty diverse offering of toy/gift stuff.  Gregory pick out a little badge/pin making set.  We will have fun with that.  We got back to clinic and waited, he then fell asleep.  I had been writting off his general well being, lately, to his dental work on Wednesday.  He hasn't been feeling well and was getting pretty pale.  The nurse noticed this (they are trained to do that.) and I think she knew he needed to be transfused.  When she drew Gregory's initial blood, she drew a little extra for the type and cross.  Smart girl.  It saved a little time and resources, too.  There is quite a bit of garbage, aftter a blood draw.  He woke up as they were starting the transfusion.  Only because vitals needed to be taken, beforehand.  About two hours into the transfusion and Gregory started to perk up again.  He was hungry and happy.  By the time we left, he was running around the unit and happy as a clam.  Which continued at home.  Due to the long nap, he wasn't ready to crash until about 11:00.  So we did.  The other OffSpring are at Nana's spending the night, so it was quite on the homefront. 

Oh yeah, his platelets look great.  Post transfusion on Tuesday they were at 168.  Today?  83.  I'll take it and be glad.

Which means we don't have another blood count until Wednesday.  His chemo is staying at the same dosage.  I'm grateful for that, too.  Which leads me to my next item.  Thursday night Gregory woke up about 3-4 times with inconsolable crying.  I haven't yet figured out the nature of it.  He cries so hard that it bring on coughing.  I think that the chemo is starting to effect (affect?  Shit.  Krista, can you help me out, AGAIN?) the lining of his throat and mouth.  'Cause when he coughs, he grimaces like it hurts.  This is why I'm up at this hour.  He's had one crying/coughing episode, tonight.  They don't last long, but when you are powerless to comfort him, two minutes can feel like an hour. 

Wanna know how small this town is????  I'm an online addict.  I've meant some really great people due to this portal.  Joe and Kim are two of those people.  They live here in Spokane and we've never met.  At least I thought so.  They very graciously picked me up some Miso paste and arranged to bring it to me at the hospital, today.  I gave Kim a hug and said "It's great to finally meet you!"  Her response?  "Well, we did meet.  When Gregory had his central line in.  I helped with that."  At the time we just didn't realize who each other was.  I'm not sure excatly what position she fills, but she does have a pink name badge, which tells me she works with infants and kids.  Spokane is so stinkin' small.  Thanks Joe and Kim.  Looking forward to Miso for today!!!! 

I also have a mysterious benefactor.  I haven't mentioned it much, but I have an old Rainbow vaccuum.  It works great, but it requires water for use, is fairly old, we got it second hand (of course, by choice).  When Larry brought it home, origianally, I was excited.  It does a really great job.  Right now, though, it's a pain in the ass and if you don't let it air out between uses, it smells musty at start up.  Which makes me nervous, in terms of bacteria and fungus.  Larry pulled up to the house today and sitting at the top of our stairs was a brand new Dyson vaccuum cleaner.  I have been lusting after one, ever since they came out.  I can't believe it.  I'm still in a little shock.  So guess who was running the vaccuum at 9:00 tonight?  ME!!!!!!!  It works like a dream, is MUCH quieter than the Rainbow and is so small.  I feel a little bit spoiled.  So.  Mysterious Benefactor, THANK  YOU!!!!!!  I will think of you every time I fire up the Dyson.  Thank you for helping to keep my house, my family and Gregory, healthy.  (Yes, the envelope was attached.  Thank you for that, too.  Whatever would make you think that Shopko was a store I would frequent??? ) 

Now the Dyson needs a sparkly name.  Any suggestions?  I'm thinking something gender neutral.  I cannot see it as male or female.

I had a few more thougts, but they have escaped me.  I think I'll lay down with Gregory and catch a few more z's.

Once again, love to you all.  Yes, I mean you.  Gotta jet.

Arrrrrgh, Matey!

Nothing too dramatic to report, today. I went to the J-O-B. Gregory hung out with Nana until Daddy picked up AnnMarie from school at 1:00. Curtis came down with a rumbly stomach last night. He had to stay quarantined to his room. Which he handled with grace. Curtis has been so great, through all this. Gregory slept late-ish and woke up in pain. Yet, none of us could get his Tylenol with Codeine in him. Since he was in pain, he did not want to eat or drink. I got home around 5:30 and managed to get him to take some Magic Soda around six. It kicked in and he felt so much better. I wish he could get the connection between willingly taking medicine and it making him feel better. Yet, he would also get that his Chemo makes him feel worse. Double edged sword, with THAT one. I was able to shower him and get his Central Line dressing changed with little trauma. I think the site is healing, which means less pain. He also had that Coediene on board, too. He ate a little bit and played with AnnMarie. Laughing, giggling and "treasure hunting" ensued. "Mommy, where's the X?"

On another note. My 20 year high school reunion is this summer. The timing couldn't be crappier. I loved high school. I was so excited to see everyone, again. I've been on FaceBook for some time, now. Within the last few months, classmates have been showing up in droves. It's been awesome to re-connect and kinda get to know each other, again. I was really looking forward to the reunion, because of FaceBook, too. Afterall, the preliminary shit is out of the way. Alot of us have gotten the "What have YOU been doing for the last 20 years?" question out of the way. Which would mean the akward, tentative conversations would have been out of the way. It's amazing to see what everyone has done with their lives. My fellow classmates are doing some pretty awesome things. Depending on Gregory's "health", I've considered coming back for it. It all depends on what kind of shape he is in during the first weekend of August. We will have to see.

Blood counts, tomorrow. Curtis and AnnMarie will be spending the night with Nana. Which means, I should be able to crank out a few chores.

Before signing off, a few more thank you's:

missjust, mccorkleknight, Will & Casey: Thank you so much for the cards for the OffSpring!!!!!!!!!!!!!!! Curtis LOVED the giftcard, AnnMarie couldn't believe that you knew she LOVED guitars (HOW did they know, Mommy?). She also wore the little necklace today, to show all her classmates, and Gregory has been hunting for treasure all night. Handmade treasure maps included, of course.

Renee' O. You inspire me. I love you.

Kerry Ann, I forgot to thank you for my lunch/dinner, today. Remember, I get it. ♥


Gotta jet.  Fierce squeezes to you all.

Why is six afraid of seven?

Where do I start after a day like today?? I was up at 5:00, threw on my clothes, started the car and readied Gregory. I had changed his clothes the night before, knowing full well that trying to put fresh clothes on him this morning would have been near to impossible. I scooped him up and we headed out the door. His central line was placed at Sacred Heart Outpatient Surgery, so finding the site was a piece of cake. He had not seen the area from an outpatient prospective. Last time we came in from already being inpatient. I think he had an idea that something different was up, though. The intake was ok. He was clinging and unwillingly to chat. We had several different people come through the room. I couldn't get him into the hospital pj's. He has been so adamant about wearing his own "real" clothes. He's worn PJ's once, since we've been home. Thankfully he did not get versed, this time. He willingly went to the nurse and happily allowed her to carry him to the OR. Not long after they had taken him back, an employee came to me with a phone, the doc (Dr Herzog) was on the line and neede to let me know that his dental work was a bit more extensive than we originally had planned. He would need some crowns. Around 9:00 doc came out and filled me in. Gregory has a small mouth and crowded teeth. After they got in there, had a chance to take some pictures, they realized that he needed some serious prevention and protection. Gregory will not be able to go to the dentist for one year, post sucessful BMT. He also CANNOT have an infection of any kind, in the meantime. An infection could be fatal. So. Eight crowns and four caps later, Gregory's mouth is ready for BMT. Yes, you read that right. All eight molars have shiny new crowns and his top four front teeth have porclain caps. Fuck! That was my first word, upon hearing the news. At this point I got to go back to recovery and be with Gregory. He came out of the anesthesia HARD. Lots of tears, coughing and an inability to settle. He would just start to calm down and something would set him off. He eventually got a grip and started asking for things. The first thing? His shirt. They had taken it off, in order to put all the monitors on him. Right now, clothing is a big deal, can you tell? He also still had little spots of blood on his face. I can't even begin to imagine how he was handled, in the OR. The accomplished so much in such a short amount of time. Which I'm grateful for, but imagining them working quickly in his little mouth on an examination, pictures, eight crowns and four caps, along with all the prep and clean up, in about 90 minutes is baffling. Another round of thank you's and kudo's go to Children's Choice Dental.  They are our regular dentist and I did not know that they work hand-in-hand with the Peds Onc patients.  They even do rounds on the Peds Onc floor.  My heart goes out to them for the work that they do.



We left, picked up his Tylenol with Codeine and were home by 10:30.  Amazing.  One thing, of note, is that his profile is changed.  The caps on his front teeth have changed the way his mouth looks.  Also, peering into that little mouth and seeing all the "stuff" is really hard.  I have this knee jerk, stereo typical response to small children and massive dental work.  I've always equated it with poor diet and poverty.  That has now changed.  It will take him a little while to get used to his new mouth.  His speech has defintately taken a hit.  Listening to him speak today was a challenge. 

We got home and he was NOT going to go to sleep.  Though I know he really could have used a nap.  I think he was afraid to fall asleep.  No surprise, there.  Look what happened the last time he took a nap.  After a little bit he was hungry and thirsty.  I managed to get his Tylenol with Codiene in him with a little bit of soda magic.  I'm a firm believer of maintaining pain from the get go.  After tomorrow i will let HIM show me he needs some relief.  In the mean time I'm trying to keep ahead of it.  Also, I'm hesitant to give him too much Tylenol.  Tylenol is a fever reducer.  If he does have any kind of infection going on, the Tylenol will mask the symptom and he could be in trouble without my knowing it.  I had a discussion with his Oncology office today, regarding this, and since he has been so healthy, the risk is smaller than him being in pain.  We've not been admitted for two weeks, now!  Yay!  *knock wood*

Part of keeping him healthy, is keeping him hydrated. 

Today's choices?  Chocolate milk (fortified), Gatorade, Apple Juice and his Magic Soda for dispensing Tylenol and his 6-MP. 

I work tomorrow and he needs a bath and his dressing on his central line changed.  Blood counts Friday morning.  Hopefully, we will be able to chill a little on Saturday and Sunday.  I've been rather neglectful of the laundry and other duties.  The last three days have taken more out of me than I should have let them.  I need to get back on the wagon, for a little bit. 

Time to go curl up with the munchkin and cuddle away our fears.  More later, of course.  Gotta jet.

Mr Sandman......

Tired. Worn out. And it's just the beginning. Another six hour trip to the doctor, today. Gregory's platelets dropped to 24. Even with the low dose chemo. We haven't adjusted his dose, though. He has his dental work tomorrow, so he was transfused, today. Six units of platelets and his one hour post count is 168. We have another count check on Friday. We will see how much is drops. His hematocrit seems to be holding around 25. His white count is 25.

I received a phone call from Seattle Cancer Care Alliance, today.  I now have a contact for our Search Coordinator.  They are the folks that did the HLA typing and are coordinating the donor search.  They also requested additional labs.  Not quite clear on what they needed.  I will find out more.  Dr Reynolds also requested additional labs.  Microbiology something-or-other stuff.  Again, not quite clear.  These results won't be done until April 28th.  I'm beginning to think that I'm not the only Polyanna in this scenario.  Getting a match, completing Chemo and being in Seattle by May seems like a wet dream.  I think that, realistically, we will be lucky if we get there sometime in June. 

Note to self:  Quit googling JMML.

This cancer is so rare, that it is incredibly difficult to find patients, online, that are CURRENTLY progressing along the same timeline as we are.  Either that or they aren't online.  'Cause everytime I think I've found a group of fellow patients, many of them are several years post BMT, currently going through repeat BMT's or the little tykes have passed away.  I'm also having diffuculty finding folks that were diagnosed around the same age.  Most kiddos are under two, with a large percentage of those being under 12 months. 

I still get baffled that we are in this nightmare.  Some days I'll have several moments of "normality" and something snaps me back and I get hit all over again with the enormity of what we are doing. 

Today were conferences for AnnMarie and Curtis.  I really wish I  could have been there.  Not because I would have handled it better than Larry, I just wasn't there.  Since this week is conferences, it's early dismissal.  Larry and Nana have balanced everything so well.  The kids are handling it really well, too.  Next week is spring break and I'm hoping we have at least ONE day of nothing to do.

OK, local yocals.  If ANYONE is making a trip to Huckelberry's on Monroe, I have a request.  I've been dying for homemade Miso soup.  Made from Miso Paste.  Not the pre-packaged mixes.  Can anyone help me out???  I just cannot seem to find the time to get there, while they are open or not crawling with people.  I can get the firm tofu, green onions and seaweed anywhere else.  It's just the paste that is giving me grief.  I've heard that Fresh Abundance carries it.  Not to sure about that, though.

I have more to get out, but Gregory is sleeping peacfully, Curtis and AnnMarie and with Nana and Larry is out.  I think I'm going to steal a few winks.  We have to be at the hospital at 6:00 tomorrow morning.  I need to bank some z's.  Love and fierce squeezes to you all.  Gotta jet. 

He brings home the bancon AND fries it up in a pan.

Today's high point? After working a full day today, I get home at 5:30. Guess what? The OffSpring are sitting down to dinner and the dishes are nearly half finished. Also? Enough yummy baked salmon for me, too. Larry truly enjoys cooking. Do I feel upstaged in the kitchen. Heh, are you kidding me? NEVER. Food is ALWAYS better when prepared AND cleaned up after, by someone else. Thanks, L. You made my day. ( I know, PDA. I'll stop.)

From what I can tell Gregory had a great day. I love it that when he is ready to crash, he asks for me to come lay with him. We laid together on the Cosmic couch (which turns into a bed). He was curled up playing his Leapster, leaning against me, while I cruised the interwebs. This experience is going to change our relationship. Lifelong. I will not have this kind of bond with the other OffSpring. Which means I will need to work doubly hard, with them.

Despite the next two days events, I get to spend them, with him.

Besides, how can you resist cuddling up next to this:


Amy, Ryan and Joe...... thank you. 110% Snuggling is one of our favorite pastimes. How did you know?

Sandra BB ~ I'm speechless. Thank you.


Dishes are calling me and blue jeans are tired of being wet. Gotta jet.

We are Warriors

Today was the day that I started "the talk" with AnnMarie.  She has a habit of whining and crying.  She is the only girl in the family (aside from me, of course) and also the middle child.  I really thought that being the only girl would help to lessen the "middle child" stuff.  I'm beginning to think that it exacerbates it.  Her dialogue lately has been "It's not fair, Gregory get all the attention!".  In various forms.  I've tried several different responses to this.  I finally had a heart-to-heart with her.  Sitting indian style, on the kitchen floor.  I told her that if we do not help Gregory, he will die.  I told her that I was scared, angry, sad, frustrated.  We both cried.  I told her that this sucks.  Every thing about it.  Yet, it is what it is.  We have to fight it and get Gregory better.  The conversation is not over.  It will be a countinuing thing.  Yet, I hope that I made an impression.  I do NOT want her to say, "I want cancer."  Just so she can reap the perceived "benefits".  I also want her to understand that Gregory could die.  Kinda blunt, huh.  Yet, it is a reality.  We will fight, stay positive and conquer this beast.  Except I DO  NOT want her to believe that I can fix everything.  I DO  NOT want her to think that I lied to her.  We also talked about how you can't catch Cancer.  How Cancer doesn't happen because you did/did not do something.  It just happens.  For no reason.  You just have to fight like hell, when it shows up.

Gregory had an OK day today.  He seems to have a period of "normal" in the late evening.  This is when he is the most hungry and happiest.  Except he does not like me to be out of his line of sight/hearing.  He thought I was going somewhere today and point blank told me not to leave.  "Don't go anywhere, mommy."  I think he is scared and confused, too. 

My mom picked up some really cute, little speakers for my Zune and laptop.  I can't go to Seattle withouth the ability to listen to my tunes.  Here's the kicker.  Who, in their right mind, think it's cute to name a product 'Tweakers'?  Somebody was asleep at the wheel on THAT one.

Answer of the day.........  NO.  We do not have a match, yet.  Everytime the phone rings, I get anxious. 

I put a few hours of work in today.  It's not hard to do.  It just is.

Work tomorrow.  Early dismissal all week.  Doctors appointment with possible transfusion.  Dental under general anesthesia on Wednesday.  Conferences on Tuesday.  Thursday, work.  Provided Wednesday went well. 

Also, to all my Jefferson peeps.  I thought about you all day Saturday.  I hope the auction RAWKED!  I'm sure it did.  I wouldn't be surprised if it was the best one yet. 

If anybody has ANY questions, PLEASE feel free to call/email me.  The phone volume has receeded.  Also?  There is this little button on the phone labeled "TALK" and I know how to NOT press it.  Leave me a message and I'll get back to you. 

Gregory is peacefully sleeping.  I need to get some laundry finished and do a little more work.  'til later, gotta jet.


I will leave you with this, though.....

moo.com & Knitting!

Feeling spammy, today.

I've started AnnMarie's sweater. This yarn is so flippin' yummy. I'm trying to decide if I'm going to use the same yarn for myself. I need to see if it comes in greens. I really want a green one. I'm using the same pattern for AnnMarie that I used for Gregory. It is the greatest pattern. The Wonderful Wallaby This picture does not do this yarn justice.



If you don't know about moo.com, you should.  They are linked with flickr and are the best "business cards" EVAR!!  I've been using them for a few years, now.  You design them, upload pics, whatever you want.  There is also a keychain holder that makes accessing them super simple.  I love them.  I designed some for Gregory, the name of his cancer and TheGreginator.  They turned out perfect. 



Not a very good pic.  My macro skills suck.  These remind me of turn of the centruy calling cards, with personality.  Go moo.  It's fun.

I so get this.

Totally not related and off topic.  This is so great.  If you are gonna celebrate......  celebrate BIG!!


http://www.youtube.com/watch?v=HBXQlGNAx_Q

More of the mundane.

Trying to remember about yesterday.  Gregory woke up pretty hard and couldn't quite settle, for the rest of the day.  Nana came over and sat with him, while I went for Coffee therapy.  The lovely Miss M joined us for coffee.  Thanks for coming, girl.  Your stories liven it up.  On the way home I stopped in to Shopko to pick up some luggage.  'Cause I NEVER travel and don't own a piece of luggage that isn't less than 20 years old.  Vintage luggage doesn't work, either.  I needed something I could beat up and not worry about it's value.  Shopko was running a clearance sale on their luggage and it worked out well. 

Some very good friends are in town.  Heidi and Paul.  Their daughter Lindsay is here for a basketball tournament.  Heidi, Paul, Lauren & Sydney (the twins) stopped by the house for hellos and comfort.  Heidi and the girls brought Gregory a build-a-bear frog.  He's so stinkin' cute.  They also remember Curits and AnnMarie  and brought them WebKinz. 

Gregoy was a little overwhelmed and crabby.  He didn't eat well, yesterday.  After picking up Cutis and AnnMarie we stopped at the grocery story and I picked up stuff for milkshakes and powdered milk to make fortified milk.  Powdered Milk + milk = Fortified Milk.  Anyplace we use milk for him, we are using fortified milk.  Thankfully he really likes milk.  Also, he loves Blueberries!!!!  Chocolate Blueberry shake, anyone???  Even though this is low-dose chemo, for now, I want to make sure that his nutritional needs are being met.  I do not want to see a feeding tube. 

Gregory fell asleep about 1:30 and took a great nap.  When he woke up, he still was crabby and not feeling well.  I think his stomach started to give him grief.  He started askin to go to the hospital.  Then all of a sudden about 9:00 he turned a huge corner.  He was happy and playful and hungry.  For a few hours, Gregory was Gregory.  Larry and I both looked at each other in amazement and we were grateful to have it, regardless of the time of day.  We read a book together, colored together and he ate.  Gregory has always been a grazer, so offering food to him at all times, is not an issue. 

This morning we woke up late.  9:00!!!  Gregory is still happy and playful.  I feel like such a bad mom, though.  I sneak his crushed pills into about 4 oz of soda.  We never drink soda, so, of course, when it's around he wants it.  Gregory is far too smart for me to try and hide it in food.  The soda works perfect.  He thinks he's getting a treat, meanwhile I'm feeding him poison.  Poison that will save his life, but poison, none the less. 

AnnMarie spent the night with Nana, last night and Gregory and Curtis are getting along GREAT this morning.  They are having fun, playing together. 

My attitude, lately has been less than diplomatic.  I try really hard to to be respectful of everyone's situations.  I currently feel like wearing a button that says, "My kids got Cancer.  What's YOUR excuse?"  There is so much that just does not matter, right now.

Do a little dance.....

Excuse me, Mindi, but I don't think I noticed, "do a little dance," on your "to-do list."

You do plan to dance today, don't you?
Get down,
    The Universe

I mean, it is 2009 and all, Mindi, but you're still a supercoolhappylovething, and that comes with certain responsibilities.

Stop. Chemo time.

Thursdays are not fun. Today was doctors appointment and dressing change, for his central line. The covering for his central line is super sticky. The bio derm patch over the wound likes to stick, too. I can't tell how much it hurts, but removing the dressing and cleaning the site is not fun. Afterward, we are both very tired.

Today's blood draw was not good. On Sunday, Gregory's platelets were at 136, post platelet transfusion. Today, they are at 35. Huge dive. His HCT and red blood count are also declining. Tonight we start low dose, oral chemo. When those words came out of the doctors mouth, I immediately got sick to my stomach. I've been nauseous ever since. Knowing that it is coming and having it actually happen, are two different things. I just thought that we might have a few more weeks left. Not the case. He is taking mercaptopurine. Also referred to as 6-MP. It is a purine antagonist. It slows the growth of rapidly growing cells. Which includes hair and nails. He may or may not lose his hair, at this point. It is a low dose, simply maintenance, for now.

Tonight all the OffSpring and I are going to check out the Candlelighter's support group.  They meet the third Thursday of every month, at Children's Hospital.  I'd like to get the sibs hooked up with some peers.  Kids that are going through the same thing they are.

In order to get Gregory through the dressing change, I bribed him with bubbles.  When we stopped by to turn in our membership for Candlelighter's, he was able to pick out two toys.  A pink, plastic slinky, which he LOVES and a tube of bubbles.  He was pretty happy to get out on the deck and blow some bubbles. 

More later.  Gotta jet.

March 18, 2009

We are here.  Poking along.  Lots to share about today, but it needs to stew for awhile.  I'm not ready, yet.  Nothing very interesting, just emotional.  Worked today, tomorrow we get to be together.

All this over a backpack?

I'm obsessed with funky, fun, colorful handbags.  The last few weeks have been very trying in the handbag department.  The amount of stuff that I find I need to carry is.........huge.  Calendar, paperwork, snacks, activities for Gregory, camera, tips for his central line.........  Also, since there has been so much going on and he really is not himself, I've been carrying him alot.  I decided that I needed a backpack.  There are NO fun, funky, colorful backpacks available that are functional and durable.  I found one that will work, but desperately lacks the funk.  So if you see me around town, sporting this backpack, I have not lost my mind.  The funk will return.  Only when functionality is not so important.

Long lost friends, found again.

I spent a good part of today, reconnecting with friends and family on the west side of the state. I'm so grateful that even after 15 years, I can still reach out to these people and they are available, willing and receptive to hearing from a long lost friend in crisis. I'm excited to ge the chance to see everyone. My life in Seattle feels like a lifetime ago. Can't believe that I get to re-visit it. Not that there will be alot of down time, but occasionally, I'll need to take a break and hopefully I'll have a friendly face to do it with.

On the topic of Seattle...... Anybody know of any great local yarn shops within busing distance to the U-District??? I'm thinking Fremont, Northgate, Capitol Hill? Ballard is a little too far. Any suggestions would be welcome. I'm also wondering it that really great coffee shop, in the Alley, next to the book store is still open. I can't remember the name of it!!!!! Wait! I just found it, The Allegro!!!! They had the GREATEST Ghiredelli Mochas!!!! It also looks like Schultzy's is still in business. The BEST sausage place, EVAR! Brewski's?? Big Time Brewery is still up. So. I've got my basics covered, hopefully. Coffee, beer and knitting. Is there anything else? Oh yeah, Gregory's health. Yes, that is of the utmost importance, but I know I need to take care of me, too. Otherwise I will not be good for Gregory.

Work tomorrow. Blood counts on Thursday. Coffee Therapy on Friday. Provided Gregory stays healthy.

Thanks again, everyone. You ALL are making an impact. You ALL are important to us.

Oh yeah, if my memory serves me correctly, this is the doc that helped us the first night in the ER. I will be forever grateful to this man, too. Anthony Ferroggiaro, MD

Dentist & General Anesthesia

We just got back from the dentist.  Gregory has a few cavities and crowded teeth.  With his compromised system, they want to get it all done at once and as efficiently as possible.  Which means that next Wednesday the 25th (the one month anniversary of his diagnosis) he will be going under general anesthesia to accomplish this.  Which means a through check of his counts, prior to, possibly another transfusion.  It's kinda weird to think that he is going to be put under for dental work.  It makes complete sense, though.  He needs to be in tip top condition, prior to transplant.  Your mouth is one of the first avenues for infection.  Something he cannot have now or post transplant.  So.  We are still waiting on a donor match and we have a blood count appointment on Thursday.  That's all for now, folks.  Gotta jet.

Homecomings are awesome.

Today's been a rough day.  Inactivity sucks.  Not knowing how long it will take to find a match, sucks. 

Hardly anyone can relate to this.  It is simply mind blowing how huge it is.  If I could, I'd step into Gregory's shoes, in an instant.  I hate that he has to go through this.  I hate that AnnMarie and Curtis are going through this, by proxy.  I feel powerless and defensive.  Today is a bad day.  This will pass.  Tomorrow is busy and I'll be home all day.  Being at work is painful.  Necessary, but painful.  There will come a time when I will need to walk away, for awhile.  If Larry wasn't here, I could not go to work.  Knowing that Gregory is at home, with Daddy, is priceless.  Coming home to Gregory's greetings are priceless.  "Mommy?  Mommy's home!  MOMMY!"  Then he doesn't leave my side for several hours.  Knee hugs, a plenty. 

Dentist in the morning.  I'm hoping we can get it all done, tomorrow.  *crosses fingers*

I had a whole entry composed in my head, earlier.  It has since vanished.  More later.  Gotta jet.

The Ides of March and then some.

Did 'ya miss me?  There really was not much going on Saturday.  Curtis and AnnMarie had spent the previous night with  Nana &  Papa and Larry had hit the road, so when I woke up in the morning, It was just Gregory and I.  It was kinda lonely and weird.  Gregory slept late 'cause his sleep cycles are totally off and I wander a little aimlessly through the house.  The kids got home around noon and we just hung out the rest of the day.  Saturday night I "snuck" out of the house with a great friend, for a brewski.  Forgetting that it was St Patrick's day weekend, when the plans were made, we chose an out of the way location that proved to be entertaining.  Lesbians and cowboys, anyone?  It was montley and comforting.  With a side of Karaoke.  Which we shamelessly sang along with and converesed about goofy and intelligent items, at the same time.  Which is why I love her so much.  She allows me to be a goof ball and be intelligent all at the same time.  She also doesn't bat an eye, when the conversation gets sprinkled with really random thoughts about Gregory and his cancer.  After awhile we headed out to grab some grub.  It's been so long since I've had late night grub.  The Satellite is usually the place of choice.  We weren't about to head downtown, though.  We finally made it to a Shari's and it was so good!  First "real" meal I've had in nearly three weeks.  It also managed to not hit my belly like a ton of bricks.  All in all, it was such a great night.  Love you, girl!!

Today was our platelets day.  We were scheduled to get there at 10:00.  At 8:00 we received a phone call, requesting that we come down at 9:00.  Doc had been called to the ER and since he was already there, it was easier for us to come earlier.  Gregory was still sawing logs, so I hurried and got ready, then scooped him up to leave.  The clinic is actually attached to the inpatient Ped Onc unit at Sacred Heart Children's Hospital.  So on the weekends, you just go to Peds Onc and they take care of everything.  The last time we had been admitted, one of the blood cultures showed positive for something.  So, in addition to today's regular blood count, they re-did the cultures.  Just to be sure it was a false positive.  The hardest part of all this is the exorbatant amount of waiting.  We were there for six hours, today.  We neede to wait for the blood counts, in order for doc to determine how much platelets he needed.  We waited for the platelets to arrive.  We waited for the platelets to be transfused.  We waited for them to "get in place".  Then another blood count.  Thankfully we did not have to wait for results on the second draw.  I was able to receive them via a phone call.  His platelets this morning were 31.  They took only a two point drop between Thursday and today.  His hematicrit went up, though.  After platelets were transfused, they were at 136 and his hematicrit went down to 24.  Weird, huh?  He has his prescription for antibiotics and we are ready to see the dentist on Tuesday.  All the waiting did present results, though.  I was able to finish Gregory's sweater!!!!!  It is beautiful.  He even got to wear it home.  On the way out, a nurse commented that he needed to show it off.  So Gregory then proceeded to knock on patients doors (they all are glass), point to his sweater and said, "See!!  New sweater!"  He was more that a little pleased. 

We did get word today on the HLA typing for a transplant match on the siblings.  (See how I burried it in the body.)  The siblings are NOT a match.  Significantly.  I am rather releived to have this news.  The thought of putting them through all that , just wasn't sitting well with me.  It's fairly common to not have a sibling match.  Now we have to focus on obtaining an un-related donor.  The call goes world wide.  Who know's?  Maybe some long lost branch of our combined family tree is unwittingly going to receive a phone call, saying he/she is needed.  How awesome would it be to get THAT phone call.  Knowing that what you signed up for so many years/months ago, is going to help save someone's life, halfway around the world?  Also the life of their family and those around them.  When we are through this, I would like to sign up for the registry.  We need to get through THIS first. 

I also found out that his chemo will be outpatient and be oral pills.  High dose vitamin A (think accutane, crazy, huh!) and something else.  I'm obsessed with timelines, so I keep asking and keep receiving really vague responses.  Which is OK.  I've taken a crash course in the unexpected.  Gregory's blood type is B Positive.  So 'ya all, be positive!

We had a surprise delivery of a home cooked meal, tonight.  Pot roast, mashed taters, gravy, FRESH green beans, fresh fruit.  Quite timely, too, due to the six hour visit with the hospital.  It was so flippin' yummy.  Lori?  You cook a mean meal.  Thank you!!! 

We needed a few things from the grocery store so AnnMarie and I ran out together.  We haven't done that in a while.  It was so nice to be just us.  She has been a little magnet.  She's never far from my side and can't seem to get close enough.  She is really in need of mommy reassurance and I haven't always had it in me to give it to her.  Today we wandered about the store, selected our items and had goofy/serious conversation.  Serious topics always seem to come up in our casual conversation.  Which is the way I like it.  The power went out partway through, but we continued to do our shopping.  Thankfully, Albertson's has back up power and could operate.  Aparrantly, Safeway and Roseauer's were turning people away.  We got home and not more than 30 minutes later, the power, thankfully, came back on.  One thing that is helping AnnMarie, is that, now that I'm done with Gregory's sweater, I've started on hers.  I am in love with her yarn.  The colors are stunning.  Can't wait to see what it will look like.  It's already so beautiful. 

Wow!  A little wordy?  This is what I get for going more than 24 hours w/o posting.  Hope I didn't lose too many of you.  Gotta jet.

Simpler place & time...........

My son has become a night owl, like his mother!!! He is still wide awake and not ready for sleep. At least he thinks so.

It's been a quiet day. A bit sobering, a bit exciting, a bit teary. For the last four years or so, I've been gathering with some really great women on Friday mornings for coffee. We never know who is going to show up, you never know what topics will be on the table. Nana arranged to come and sit with Gregory on Fridays so that I can still keep this ritual. And ritual it is. I call it my Friday Morning Therapy. Hell of a lot cheaper, too. We have been through some amazing things, together. As they stated today, it's my turn. I hate that it's my turn. Yet, it is what it is and I am so grateful to have them in my life and be such a large part. If you are local and haven't tried it yet, Chaps is where we go and it is divine. The coffee is awesome, the food, the kitsch, everything. The owner Celeste? Irreplaceable.

I've never been a good housekeeper.  It's not my strong suit, and I hate it.  There are so many other things, I'd rather be doing.  Lately, I've really enjoyed the simple tasks of a few loads of laundry, a sink of dishes, vaccuuming.  I have troubles sitting still for more than 15-20 minutes.  Which means I have been doing alot of the little stuff, that's been put off for so long. 

I've been trying to coordinate Gregory's dental appointments. He needs to get his exam/x-rays and any dental work done, before we head over for transplant. I would also like to get it done before chemo starts. He will not be able to see a dentist for some time, post transplant. Even though they are only baby teeth, I know that the health of baby teeth determine the health of adult teeth (I think I've already mentioned this before.) In order to prepare him for his exam, he will need a platelets transfusion and an antibiotic. We go in Sunday for a CBC check and his transfusion. His appointment if for Tuesday morning.

We also got word today, that they have a PRELIMINARY report on his HLA typing. Which means we are one step closer to obtaining a match. There are still several steps, but it's closer.

Yesterday I changed his central line dressing and noticed that it was a little red and crusty. Just to be safe I called the IV people. It's totally normal and healing well, btw. During our conversation, the nurse mentioned that she saw we were admitted the other day and apparently the last "rubber stamp" test did come back as positive for JMML. Not that it is a surprise, except it would have been nice to have had the confirmation form the doc.

It's really sinking in how rare this is. There is very little information available. Even on big. kids cancer sites. I think I would like to talk with some people who have had kiddos that went through bone marrow transplant. I'm not sure, though. I know the process is incredibly grueling. I also know that each case is different. I'm trying to stay positive. I should also add that I do medical billing for a dermatology group. The world of medical terminology, white coats and even hospitals do not freak me out or intimidate me. Neither does the insuance piece. For obvious reasons. Also, all three of the OffSpring were by C-Section. The world of hospitals has always been a happy place, for me. I know that hospitals are supposed to be there to help. Most of the time, they do. This is what I'm banking on. I also lived in Seattle for four years, three of them in the U-District. Which is basically where we will be going. My comfort level has been very high, due to these reasons. Thank the gods for that.

Curtis and AnnMarie recieved their first SuperSibs packet today, in the mail.  They both had a quiet pride as they went through the stuff.  Also, I think Larry is going to try and take them to a flick on Sunday (Thank you Tara!!  I should be sending you Birthday love, too!) 

I'm anxious to see where is blood counts are on Sunday.  I'm also anxious to get this kid to SLEEP!

Gotta jet!

Address!!

Hi there!!  There have been several requests for our address.  Rather than provide our home address all willy-nilly, we opened a PO Box for our family.  While the focus is The Greginator, I would like to mention that the siblings are of equal importance.  Cards and letters for Gregory are awesome, if it is possible to include the siblings from time to time, I would be forever grateful.  I'll probably add more to this later, but I wanted to get it out ASAP.  (OK, Jodes, you can run with The Greginator's People, now!!!  Love you, woman!)  Our info:

AnnMarie Bibb ~ She's seven and in the first grade.
Curtis Bibb ~ He's 10 and in the fourth grade.

The Greginator ~ He's nearly four, but is actually around age 5.  He's one smart cookie
PO Box 31282
Spokane, WA  99223

Thank you to everyone who is willing to support our little family.  You have made a permanent entry to our family's history.

Gratitude

I get these really great daily "Notes From the Universe". Today's could not be more true...... I love you all. Thank you for being here, for reading for traveling with us. ♥

Never underestimate, Mindi, how many friends you have, how close you are, and how much fun you're going to have.
Because, as you've seen throughout your entire amazing life, one usually gets exactly what they've been estimating.
You thrill me,
The Universe

March 12, 2009

We are back from the doctor's appointment.  His hct is staying stable, no red cell transfusion in the near future.  *crosses fingers*  His platelets dropped to 33.  His floor is 20.  It was a 5 point drop in 38 hours.  We go back in on Sunday for a blood count.  His blasts have also jumped to 8.  I need to find out what the ceiling is for low dose oral chemo. 

We are preparing lunch and after his belly is full, we are going to have a bath and dressing change. 

I finally had a few moments to contact the OffSpring's Karate teacher and AnnMarie's ballet.  Karate is temporarily on hold.  It's just too much, for now.  Ballet is only one day/ week and Nana has been awesome about making sure that AnnMarie gets there.  She has her exams in May and a Performance in late May.  I'm hoping she will be able to do both.  We will have to wait and see how it turns out.  I tell ya, it is moment to moment.

'Til later.  Gotta jet!

Hospital Stay #3 of ????????????

Once again, we are home! Comfy clothes are on, the OffSpring are sleeping and did I mention, we are home??? Gregory failed to have any further symptoms. So a stool sample was not necessary. Thank you! I was anxious about how we were going to accomplish THAT task. He's nervous enough about stuff, right now. Larry came down to the hospital this morning, after OffSpring drop-off, and sat with Gregory while I went to work for a few hours. I must admit, I'm a little on overload. This last trip was exhausting. It's starting to catch up with me. We headed home about 6:00 this evening, I called Larry on the way and he had plans to take Curtis & AnnMarie to Applebees's. His words, "I don't want to you cook." Thank you, thank you, thank you. I would have done it and it would have been OK, it was just so nice to unload the car and be at home. I have learned that if I need to do something, I need to do it NOW. Simple little tasks. Just get it done. 'Cause I don't know what the next hour or two will bring. AnnMarie is still sick. I really miss cuddling and being close with her. She does, too. I'm trying to keep myself healthy and have been staying at least 3 feet away from the kids when they are sick. It's HARD! Larry does a great job of monitoring the "safe distance". I have a hard time telling them to "go in the other room, please".

This trip to the hospital was probably not necessary. I had a gut feeling that it was nothing. Except, I can't take any risks. It could literally mean life or death for Gregory. His numbers are holding. No word on a match, yet. I think it's still too early. It will be a week, tomorrow.

The OffSpring's school is going to have a blood drive!! I've asked that they do the drive for Inland Northwest Candlelighters. The Candlelighters have a "bank" of blood, that has been donated, that is used for families whose insurance does not cover transfusions. When you do a blood drive, all you need do is stipulate that the blood is for your local Candlelighter's Chapter. I'm excited to see this happen. So, if your local, stay tuned. Details to follow. If you not local, go. Donate blood at your local center and tell them it's for your local Candlelighters.

Tomorrow we have a 9:00 doctors appointment, then NOTHING ELSE!! Gregory's central line dressing needs to be changed. I'm hoping it goes well. It's taking a long time for his petechea to go away. Everytime I remove something adhesive from his skin, he gets more. Thankfullly, it's not too often. Also, hard tears will make it appear. The last 24 hours contained alot of hard tears. He's only 100% comfortable with Mommy doing things for him. Anyone else and he gets pissed. I was going to head into work tomorrow, yet it's not gonna happen. I need to take a few hours, when I can.

I talked with his doc today and I need to get all his dental done before we go to Seattle. The sooner the better. I called his dentist yesterday and was relieved to hear that they are familiar with treating kids like Gregory. Dental work is one of the quickest ways to obtain an infection. Also, with his low platelets, extra care needs to be taken. Gregory does have at least ONE cavitiy. Once he is post transplant, dental work is out of the question. I don't know for how long, yet the health of baby teeth will determine the health of his adult teeth. Addtionally, during chemo and post transplant, his diet is going to be funky. I don't forsee toothbrushing to happen all too often, either.

Oh yeah, our school bond/levy election was yesterday. IT PASSED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! There was quite a bit of "nervousness" over it's passing. We needed a 40% voter turn out of the last general election, in order to simply qualify the bond for approval. The kicker? The last general election was the record breaking Presidential election. Thankfully everyone hard work and commitment payed off. Thank you to every last one of you who worked tirelessly to get those ballots turned in. Also to everyone to voted. You have made a significant difference. ♥

As a side note:  Not that I should have to clarify this but.......  This journal is about Gregory and my point of view.  The sibs have NOT been forgotten or neglected.  At this point they are not making a huge impact on day to day life.  Mainly due to the fact that Gregory and I haven't bee home much.  They are constantly on my mind and when we are together we re-connect. 

I think I'm about out of anything to say.  For now.  Until later.  Gotta jet.

March 11, 2009

1:38 AMWhew!  What a day.  I got home at 4:00, after dropping The Offspring at Nana's.  Nana has always taken them for a few hours on Tuesday and AnnMarie has guitar lessons on Tuesdays, too.  It works out really well.  Gregory practically had tears in his eye when I walked in the door.  He was pretty happy to see me.  After all, 24/7 Mommy for two weeks will do that to you.  Larry took off for the barn and things were great.  About 5:00 Gregory curled up in the corner of the couch, started moaning, clutching his belly, sweating and said "Mommy, need to go to the hospital."  I didn't give it much thought.  He has been living the hospital for a while now and, well, ya know.  Then about 15 minutes later it happened again.  Then he got real  clingy.  Unbeknownst to me, he then proceeded to fill his shorts.  Then again on the potty, after a bath and change of clothes.  It was at this point that I started to worry.  What if this is sickness and I  ignore it?  I pulled out my Cancer Parent Handbook and looked up the section of when to call.  There is a list and you are to call if any ONE of the symptoms are present.  Well, Gregory had four.  Granted no fever, but several of the items listed.  So I called.  They sent us to the ER.  Guess what?  When you have cancer, you get seen and treated right away.  No waiting for Gregory.  Except when you get admitted and have to wait to be transfered.  Ugh!  We headed down to the hospital about 7:45 and finally got to our room at 12:15ish.  They ran the same blood tests as last week, and we should have word soon.  One bummer is that he is under house arrest, again.  No venturing out of his room, for now.  We are also back in our original room.  With the killer view.  So if you get a ticket on 3rd and Division?  I'll see it.  Perfectly. 

Apparently our Oncologist is considered conservative in his patient care.  Which suits me just fine.  I would rather be cautious than not.  So, here we are for who knows how long.  (We WILL go home tomorrow! Right?)

Work was work.  It's always been a J-O-B for me.  Nothing flashy, nothing that fills my soul.  Yet, it's the best J-O-B I could have.  Seriously.  People keep commenting that it must be nice to 'get away".  Well, to be honest, if I wanted to "get away" for a few hours, it wouldn't be work.  It would be time with friends, or a super dark brewski in a quiet corner with a good book/knitting & my tunes.  Being with my family is all I want to do.  For now.  There will be a day when this will change.  Right now, it is what it is.  I'll go to work, plugged and chug and do the right thing.  I probably wouldn't if Larry wasn't behind me, supporting me to go.  'Cause I  know realistically, I NEED to work.  On many levels, I need to work.  He knows this and is gently "shoving" me out the door.  Which I am grateful for.  Today he sent me a picture of the RugRat asleep on the couch at 11:10.    He was sacked out!  I must admit, a few tears were shed.



Depending on what happens tomorrow AM, Larry is going to come and be with Gregory, while I head to work for a bit.  Remember, we are going home tomorrow.  Early. 

Back to the ER

Gregory had chills, sweats, stomach cramps and loose stools.  We are headed back to the ER.  I  don't think it's anything crucial.  Just another precaution.  *crosses fingers*

March 9, 2009

I return to work tomorrow.  I'm scared.  It's too far away for me to be completely comfortable.  I'm afraid I'll miss something.  My circle of security has about a 3 mile radius.  I plan on going in for a few hours, a few days a week.  Provided Gregory stays healthy.  At least until Chemo starts.  I'll need to re-evaluate it at that time.  Give me strength to go to work.

Got one!

We were waiting in the PlayRoom for Gregory's blood results and he found a doctor set to play with.  It amazes me that through all this, these toys are some of the first that he goes to.  Maybe he will go into Medicine after all this.  I finally got a great shot!!!  Thank goddess for digital and many frames!  (Do they call them frames, when they are digital???  *shrug*)

Yay!

We just got back from the doctor's office and Gregory's CBC number look great.  Today?  Platelets are holding at 38 and his HCT actually went fractionally up and are at 25.6.  His WBC (White Blood Count) did go up though, Saturday it was 22 and today it's 24.5.  Which normally would be a good thing, except Gregory has non-functioning White Blood Cells.  We go back on Thursday for another exam and a draw, too, I think.

'til later, gotta jet!

Hum Drum

Rub 'n Scrub, Phase I, started yesterday.  We are now stocked on paper towels, bleach, cleaner with bleach, Lysol spray, Clorox wipes, antibacterial soap & antibacterial gel.  The bathroom received the treatment, yesterday.  Today, we just kinda laid low.

AnnMarie is still suffering from a pretty heavy head cold.  Curtis is under isolation until Monday.  It's killing me to keep the kids separate, but we really can't take a chance.

I get this text today:
"Mike just finished the Firefighter Columbia Tower Stair climb in Seattle.  (big fundraiser for leukemia & lymphoma) and told a TV reporter before hand that he was climbing for Gregory Bibb"

Mike is husband to my very awesome friend Lisa.  Mike is a Firefighter, here in Spokane and Lisa is an inspiration and a Journalist.  I love you guys!!

Gregory had a shower today and did really well.  I had to cover his Central Line dressing and he cooperated so nicely.  Even helped me out a bit.  When I removed the Tegaderm (used to protect the dressing) he showed little dots of Petechia.  Which can be a sign of low Platelets.  We already know his platelets are low, it was just further proof that this thing is real.  I have moments when everything seems normal and then vertigo sets in and it all spins back into focus.  I'm still waiting for my breaking point.  I admit that I can't settle on anything for more than 30 minutes at a time.  Thankfully, there is lots to keep busy with.  If all goes well, I will be going to the office on Tuesday. 

Gregory has a doctor's appointment, tomorrow.  Blood draw and exam.  Then again on Thursday.  I've nearly completed packing separate bags for the hospital.  They are available to grab at a moments notice. 

AnnMarie is not sleeping well tonight.  I just go.  Till later, gotta jet.

Waldo
Originally uploaded by mindithemagnificent

Gregory has gotten to the point where he hates having his picture taken, unless it's on his agenda. Hence, this shot, taken from behind. We showed up on Friday at clinic in this outfit. I thought nothing of it. Well, actually, I felt like a heel 'cause it didn't match, at all. The shirt is from christmas. Gregory is just sick and tired of wearing PJ's all the time. He is requesting "real clothes, mommy". His supply of soft, comfy "real clothes" is not all that large. We had several people ask him "Where's Waldo?". It took me a minute to get it. I guess it does kinda look like a Waldo outfit.

Wow!

P1000599
Originally uploaded by mindithemagnificent

The Pediatric Oncology Unit at Sacred Heart Children's Hospital is amazing. When you first walk down the entrance corridor, you are greeted with a stunning view of Spokane. The hospital is located such that it overlooks the middle of town. It took me several days to even realize the view on the other side of the huge windows. When I did, I just stood and stared. It's a reminder that there is a great big world outside of Cancer. I am forever grateful to the loving minds that designed this unit. It makes the experience easier to bare.

This shot was taken from a smaller window inside the Playhouse. Next time we are there, I'll be sure to snag a shot of the entrance window/wall view.

Home, home on the range.

We are home again!  This is also going to be part of our normal routine.  Frequent, short hospital stays.  That is, until transplant.

I did get the floor numbers for transfusion.  His platelets needs to drop to 20 and his hematocrit (HCT) needs to drop to 22%.   This morning his platelets were at 38 and his hct was at 24.3%.  Compared to Friday:  Platelets 44 and hct of 26.6%  So his numbers are declining, but not super quick and drastic.  If either drops he will receive Platelets or Red Blood Cells (for the hct).

Blasts are immature blood cells.  In the world of Leukemia his blast count is super low.  Which is a hallmark of JMML.  It's been fluctuating between 1% & 2%.  Today's draw yielded 3%.  Not quite sure what this means, but it's something I'm keeping my eye on and need to check with doc on, come Monday.

The blood tests and cultures that they did yesterday all came back negative.  Which is the main reason we got to come home so soon.  Despite the fact that Curtis is recovering from stomach flu and AnnMarie has a raging head cold.  Not much we can do about it.  Face masks, isolation and antibacterial soap/gel are our current best friends.

Gregory is happily chomping down lunch.  The OffSpring are home and quarantined to Curtis' room.  *shrug*  Not much else we can do, for now. 

More later.  Gotta jet!

Back to our regularly scheduled program......

Gregory had a Dr appointment today.  He slept in and woke up crabby and warm.  I  took his temp and my thermometer read 100.5.  So I rushed around and threw together a few bags for an anticipated admit.  Sure enough, we are now settled in our new room, back at Peds Onc.  He is taking it really well and we are making fun out of it.  My mom has offered to take the other two OffSpring for sleep-overs every Friday, so Larry is going to drop them off, feed the hay burners and head down to see Gregory.  OffSpring free.  While it is a bummer not to be at home, I feel relieved that Gregory's health is not in mine & Larry's hands for the next few days.  We will probably be here for 30-48 hours.  They ran some blood tests/cultures to rule out any "bug", he has been started on antibiotics.  According to someone here, I can't remember if it was a nurse or the doc, when kids like Gregory get an antibiotic treatable bug, they can get toxic after the administration of antibiotics, 'cause the Antibiotic goes to work to kill whatever is there and toxins are released in the process.  Which you or I could easily conquer with normal functioning white blood cells,  Gregory's white blood cells are far from functioning "normally".

A very dear friend of mine made a very sage suggestion.  I've been worried about one of the sibs being a match.  While this is our best route, I really am not looking forward to the weight that this action will carry for them.  Life long.  Regardless of the outcome.  Her suggestion?  Don't tell them which one.  Which sounds all well and good until now.  As I typed this I realized that this is not possible.  'Cause whoever it is will have to go through the process of "harvesting" the good marrow.  You can't do the procedure on both just to protect feelings down the road.  *shrug*  I really wish there was an easy answer to this.  I desperately want it to be one of them, I desperately want them to not match.

Another suggestion from a friend.  It was that I should have one place in my life where no one knows that Gregory has cancer.  Someplace where I  can go and "escape" this vortex that we find ourselves in.  While this sounds like a very awesome idea, I  have a hard time putting something like this into practice.  I have a habit of bearing my soul.

Gregory is no longer confined to his hospital room.  We are currently in the playroom, he is gleefully discovering all the great "new" things to do.  His favorite activity?  Playing in the kitchen.  He LOVES to play cook.  Dialogue and all.

Thanks to everyone who has stopped by, recently, dropped off gifts/supplies and your general presence.  I do need to say a big thank you to the mysterious gift bearer from AnnMarie's classroom.  The gifts for Gregory and my Toiletry Kit are awesome.  They are/will be so handy in the months to come.

More later.  Gotta jet.

I iz tired.

The IV education people stopped by the house today.  I learned how to change Gregory's dressing on his central line and how to flush it.  It get flushed every day and the dressing gets changed once a week or whenever it needs it.  The IV company supplies all our supplies.  I don't have to track down anything. 

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

What's next?

As I understand it........  Gregory's blood numbers are continuing to slowly decline.  We have an appointment tomorrow, Monday and next Thursday.  It's likely that he will need a red blood cell and platelet transfusion soon.  Also, his good cells will soon be crowded out by the cancer cells.  At that point, he will start a low dose oral Chemotherapy.  This is simply to keep the cancer from growing out of control, prior to transplant.  Once we have a match, real chemo will begin, in order to destroy all of his non-functioning bone marrow.  This part is done in Spokane.  Then it's the trip to Seattle.  According to doc, we should probably be in Seattle in May. 

Just for fun, the IV Therapy nurse said I was her first student to "get it" with one teaching session.  (I RAWK!).    My "perfect" dressing change on a dummy.

Curtis has the stomach flu.  Vomiting & diarrhea.  F*ck.  He's in isolation in his room.  Thankfully he has plenty to keep him busy.  It just sucks.

Home sweet home.

The decision to send us home was a swift one. Gregory's blood counts, while not good, were OK enough to monitor from home. The only thing keeping us from going home was Central Line training. They found out that the training could be done from home and we were cut loose. Before we left we had a visit from our local chapter of CandleLighters.  Talk about an amazing organization.  She came in with this large rolling "suitcase bag" filled with goodies.  All kids of books about childhood cancer, chemo and coping.  First aid supplies, snacks, a binder for keeping stuff together with "office supplies", a portable DVD player.......  We also were given something for Curtis and AnnMarie.  Curtis got this really great video game called "Remission", I thought it would be cheesy, it's totally up Curtis' alley, I think it will help him.  AnnMarie got a beautiful wooden art set filled with "real" artists supplies.  She was absolutely thrilled.  Her comment:  "Did they KNOW I was an artist?" 

We walked in the door at 3:30.  After unloading the ton of stuff we hac accumilated in 9 days, the work began.  The IV folks stopped by and dropped off our Central line stuff and gave me a quick in-service.  They will be by at 10:00 today to do the full training.  The kids had a date with Nana, which was so perfect, it allowed me a few hours to settle and start to organize.  They were so happy to see us home.  We had a quick discussion regarding handwashing and why we needed to do it.  We also had a quick discussion regarding Gregory's cancer.  What it is, how it works and how we are going to fix it.  It wasn't a heavy conversation.  This is going to be an ongoing conversation.  They will get the info along the way.  Once they hit the hay, I sat down with my binders and books and started organizing, 'cause that's what I do.  Gregory fell asleep almost immediately and before long, I couldn't keep my eyes open.  I was out by 10:00.  Slept 'til 6:00. 

Now the real work begins.  I must admit that being in the hospital has a sense of comfort.  I know he is safe there, if anything should happen, response is fast.  Despite his raised white count, he is not able to handle sickness.  He cannot get sick.  If his temp reaches 100.5, it means a call to the doctor, a visit to the ER, an admit, IV antibiotics and a 48 hour stay.  The thing that kills me the most, is I can't take him to school.  There is just far too much sick that lives there.  Also?  Me, the "reduce, reuse, recycle" queen?  Paper towels for handwashing are a must!  It's gonna kill me.

The OffSpring just woke up.  Gotta jet.  More later.

We are going home!!!!!!!!!!!!!!!!!!!!!!!!

Subject says it all.  I'll post a proper update later tonight.  It's going to be a flurry of activity until then.  Fierce squeezes to you all.

Until later.  Gotta jet.

An Open Letter to Larry

As many of you know, Larry and I have never had a perfect relationship.  In fact, if you've been around for the past several weeks, you know we made a decision to split.  Well, circumstances have brought this to a screeching halt.

I have a tendency to not give Larry enough credit.  This crisis has truly challenged both of us and this is just the beginning.  I need to say that he has been incredible.  He has seamlessly taken over EVERYTHING.  Without a single complaint.  There is absolutely no way, on this green Earth, that I could be here and  be present for Gregory without him.  Knowing that everything is being handled and handled well. 

Who knows what the next several months may bring.  I only know that for this moment, I couldn't have a better partner by my side.  For the time being, that's how we are living.  Moment to moment. 

Thank you, my husband.  You are moving mountains for us.

Bone Marrow Donation

I've had several people ask me about Bone Marrow testing and donation. Here's the scoop. If Curtis and AnnMarie are not matches, then we go to Bone Marrow Donor Program.  If there is no sibling match, they like to keep the actual donor anonymous.  Which makes total sense.  If any of you are feeling the need to take action with this, you can.  Go to the web site and it explains how to register to become a donor.  Even if you are not a match for us, and are willing, you would be making a huge impact on a family just like us.  It's that Karma thing, ya know.  Also, thanks to all of you who are willing to take action.  Action is all we can do.  Love you all.

Family Blood Draw

The family and I just got back from our blood draw. The clinic that does the matching is in Seattle. They will get the blood tomorrow and get to work. While parents can't be matches (Gregory has 1/2 of mine and 1/2 of Larry's DNA), they test our blood to project viability of transplantation.

Lots of positive thoughts for a match, please.  Our best chance is with a sibling donor.

A huge shout out goes to the Child Life Specialists. AnnMarie was so apprehensive. She held it together super well, yet I knew her little mind was racing. She flew through it with grace. Curtis was also fantastic. These helping hands are amazing.

I found out who our Transplant doctor will be. He is Dr Paul Carpenter in Seattle, WA.  Guess what?  He's an Aussie.  I hope he still has a great accent. 

Gregory is still not eating real well.  He is currently napping.  His blood counts went down/up where they aren't suppose to, again.

That's all for now.  Gotta jet.

March 2, 2009

What a day. First things, first. Gregory had a bath! Clean sheets. Dressing changed on his central line. Yeah!

Today he had a big blood draw. They are completing further genetic testing to doubly confirm the diagnosis that Dr Reynolds is pretty darn sure we are up against. Juvenile Myelomonocytic Leukemia. Treatment for this requires a Bone Marrow (Stem Cell) Transplantation. Larry and I and the OffSpring are going to be tested for matches within the next 48 hours. Please cross your fingers, do a little shimmy and pay homage to whatever deity you like. We need some good juju.

Gregory gets to participate in what they call Little Wishes.  Every two weeks that he is hospitalized he gets a little wish granted.  He received his first one, today.  He got a little cash register, a super plush frog backpack, some tub toys and wooden blocks.  We now have a toy "drawer" for him here in the room.  We had a chance to move his play from the bed to the floor, too.  It felt really good.  His appetite has been down and he didn't eat much today.  He also has been having an elevated temp in the evenings.  Nothing serious, just something to keep our eyes on.  His WBC (White Blood Count), RBC (Red Blood Count) and his Platelets all went in the wrong direction between yesterday and today.  Not bad enough to require transfusion, just enough to make me nervous. 

I'm not sure on the timeline, yet, for the next step.  Currently, it's moment to moment. 




Larry is working his butt off, keeping everything as normal as possible for the other OffSpring.  I can't imagine what he is going through.  Thanks to everyone who is offering support and a helping hand. 

March 2, 2009

MONDAY, MARCH 02, 2009 03:49 AM, PST

Good morning. We made it through the weekend. Time went amazingly fast. Yesterday the fear and grief finally set in. This going to be a long haul. Knowing it's going to be a long haul and then finally realizing it.

We have been discussing a diagnosis of MDS and a sub-set diagnosis of JMML. Juvenile Myelomonocytic Leukemia. It's pretty flippin' rare. An analogy Dr Reynolds used with my parents was that if you saw 25 patients a day, it would take you 18 years to meet a patient like Gregory. There is a possibility that we will be heading home soon. The proposed game plan is that we will monitor it for a few months and if things don't change, we pursue a Bone Marrow Transplantation. Which is done in Seattle and includes a 100 day stay, post op. It all sounds so daunting.

There is an ever so remote possibility that this is just a viral blood infection. Which I think, scares me more. What if that's not true and we find out later and it's much more aggressive? I would feel so much better to have a plan of action. I don't do well with 'sit and wait'.

More testing will begin today. Not exactly sure, yet, what today's testing is for. Thankfully, the central line allows for pain free blood draws.

Gregory is doing really well. He's one sick little guy, but he has charmed the pants off everyone he comes in contact with.

Thank you for ALL of your prayers and well wishes. It does help to know that all of you are out there, cheering us on. It also helps to polish my silver lining that is starting to tarnish.

Yesterday we had a visit from Cristy. Thank you, doll. I love you.

Peace, love, joy & music to you all. Until later. Gotta jet.

Sunday March 1, 2009

Cross posted from The Greginator for posterity

SUNDAY, MARCH 01, 2009 12:35 AM, CST


Today I hit a wall. Well, it started last night. I just snagged a few hours sleep and feel better. This waiting is driving me nuts. There is plenty of time to worry and theorize.

Saturday was a day of visitors! Thank you to: Sharon, Karl, Elizabeth, Clara, Krista & Willow. I think I got everybody. Your warm faces, happy hugs and simple presence is so welcome.

Gregory is getting around, playing & laughing. His blood work is still not good. The three things I have come to worry about is his White Blood Count (WBC), Red Blood Count (RBC) and his platelets. All three are not where they need to be, yet they seem to be staying where they are at.

Not much else to report. See, you get to wait in suspense, too. Until later. Gotta jet.

Sunday March 1, 2009

Cross posted from The Greginator for posterity

SUNDAY, MARCH 01, 2009 04:38 AM, CST

How about something happy??? Lush accommodations, right. OK. This unit is only about 5 years old. The room is more of a suite. We have a huge picture window facing north with a beautiful view of the city. The kids love the view. We have our own fridge, plenty of drawers/cabinet space, a small desk area, a large sleeping 'couch', a huge wing back recliner, TV, VHS, DVD, private bath & radio/cd player. Gregory has his own X-Box, his own Nintendo DS to use while we are here. The have a huge supply of DVD available to watch. There is a great play room. If Gregory were well, he'd be able to play there. The siblings, though can use it. There is a Wii in the lobby. There is also fantastic services offered by the Ronald McDonald House Charities. A kitchenette on our floor with a dinning area, games, sitting area and a LARGE tv. Upstairs on the fourth floor is another Ronald McDonald area. This one has a FULL kitchen, sitting area, eating area, play area, giant TV, private rooms for family use, washer & dryer with all things need to get your clothes clean.

Sacred Heart also has a group of folks that work in the 'Child Life' department. These folks are amazing. There only job is to make sure that the patients AND the siblings are happy and having fun. There are daily activities, crafts, events and stuff to do.

I think I've covered everything we've discovered, so far. I know there more that has yet to be revealed. This is such a top notch facility. If you need to be in our situation, this is the place to do it.

Cool, huh!