Just another day at the BMT unit. Really, it is.

Good day, everyone.  Another 24 hour whirlwind of activity.

Counts:  Platelets ~ 9, Hematocrit ~ 40, ANC  ~ 109, Weight ~ 14.3


Gregory slept for a good portion of yesterday.  We had a few hours, late in the afternoon where he was active and smiling, giggling.  I haven't been able to get him the bath, though for the last several days.  We have been doing warm wet wipe washes.  They are like baby wipes, but thicker.  They are kept warm in a blanket warmer type thing.  Yesterday he woke up with a classic GVH rash.  He was started on Prednisone yesterday.  Which comes with a whole host of side effects.  One side effect is Prednisone induced Diabetes.  His glucose levels are currently slightly elevated.  They will be heavily monitoring them with the possibility of adding Insulin shots to his regemine.  One good side effect is that he is no longer febrile.  AKA: he is afebrile.  His temp has been between 36.1 & 36.5 C (96.9 - 97.7 F).  Seeing him in the 97's is totally normal.  This is where his body likes to live.  Another side effect is high blood pressure.  Which he now has.  They have added a  medication to lower his blood pressure.  Not quite sure which one, I will update when I know.  Last pressure was 136/98.  


Now for the truly yucky stuff.  (I bet you thought THAT was enough.)  CMV is a life threatening virus for bone marrow transplant patients.  We all (usually) have it in our system or will have it.  It has very few symptoms and usually lies latent in your blood stream.  Gregory is CMV negative as is his donor.  Well.  They check for CMV twice a week.  Gregory's last test came back positive for a few CMV cells.  Not enough to have the virus full blown.  Just a few cells floating around.  Except they can replicate and activiate quickly with the outcome usually being death.  It's a pretty bad thing.  Yet, there is a solution.  They are aggressively treating him with Foscarnet.  Wich is a heavy duty anti-viral that will kill off the few CMV cells that Gregory has floating around.  Except.......  Foscarnet is well known for causing kidney problems.  Gregory gets Foscarnet twice a day at 9:00am and 9:00pm.  He gets a normal saline bolus of 130ml prior to dosing.  This helps to flush it out of his kidneys and keep everything working correctly.  If we could have some extra juju around those time frames, it would be greatly appreciated.  While the side effect of this drug is pretty scary, the outcome of not treating the CMV is even scarier.  You can get a kidney transplant.  


Gregory had some time with the Physical Therapy team today and he will be seeing them 3-4 times/week.  Thankfully his lack of fever has given him a little more energy.  With the addition of a few more medications, though, I have no idea how this is going to shake out, at least for the next little bit.  It truly is moment to moment.  I knew about the possible predisone side effect, I  just didn't realistically expect them.  I know that I  can't think too far ahead, but I am and it's not a good place to be.  I constantly remind myself to be in the moment.  Which is also a remiinder that since Gregory is napping, I really should try to catch a few z's myself.  Once again, should you have any questions, PLEASE feel free to ask.  The dialogue really helps me, too.  It also gives me ideas to journal about.  


My brain is full and my heart is heavy.  'til later, gotta jet.

Day 14 of Fevers

Let's see if I can get this out in a timely manner......

Yesterday, Sunday June 28, 2009
Counts:  Platelets ~ 12, Hematocrit ~ 29, ANC ~ Zero, Weight ~ 13.9


We had another day of Platelets, a whole unit of red cells and frequent spikey fevers.  For the second day he woke up to a high fever and heaving.  He did start to shiver and chill, later on, with a fever spike and received Demerol.  Papa was here for a large part of the day and was able to play with him and received quite a few giggles and smiles.  There was also a spontaneous tricycle ride.  It was only about 30 feet, and it absolutely wiped him out.  He started to chill right after the ride.  Gregory is so incredibly weak, right now.  The fevers combined with the work that his body is doing is tapping him out.  He is more interactive, now, though.  At least when he is awake.  


I've been having a really hard time trying to knit.  I cannot settle on a project!  I've started and frogged so many items.  I've been wanting to make myself a Wonderful Wallaby and replace Gregory's.  I am so in love with that pattern.  I'm half tempted to run out and get what I need, but I think I may wait until we are out-patient.  I do know this.  I am sticking with Cascade 220 for a while.  I've tried several different yarns lately and I'm just not feeling the Knitting Zen Love.  Cascade 220 is so lovely.  


Today!!
Counts: Platelets ~ 12, Hematocrit ~ 38, ANC ~ 88, Weight ~ 14.3


Yes, you read that correctly!!!  We have an ANC of 88, today!!  He did wake up with a fever and heaving, again.  We have added scheduled BenRag to his meds.  Which is another antiemetic.  We are officially up to three antiemetics.  He also heaved with an afternoon fever spike, yesterday.  I'm hoping this will really help him out.  If nothing else the Benadryl part helps him to get his rest.  He received a dose about an hour ago and sleeping very soundly.  He also woke up with a GVH rash.  Which is normal and expected.  He will also have steroids added to his meds, today.  To help with the GVH  rash.  Currently he has it all over his body, to varying degrees.  His back, trunk and legs are affected the most.  


Not much else to report.  June is almost over and we are one day closer to HomeHome.  Love to you all.  'til later, gotta jet!




Music:Democracy Now!

• 
  
• 
  

Whoa. A little picture heavy!

Boy did we have a weird day. After sleeping for most of Friday, Gregory woke up at 7:00, ready to be fully awake. Shortly after waking up he spiked a rather high fever, super fast. 39+ C (102+ F). Everything was going ok. 

Counts: Platelets ~ 24, Hematocrit ~ 33, ANC ~ Zero, Weight ~ 13.6K

His platelets were ordered early. When he hit the high temp, he also heaved. Platelets showed up around 10:00 and were started. They were almost finish transfusing and he started to shiver with the chills. His hands were cold and his skin was mottled. His blood pressure also went up. It was 128/77. They like anything below 125/75. I guess those are signs of spiking a high fever. Platelets were stopped. They administered Tylenol. Since he was receiving platelets at the same time, they also thought that it could have been a transfusion reaction. It was quite the flurry of activity. They did blood cultures and a vial of blood. The vial was sent off to test if it truly was a transfusion reaction. They also requested a urine sample. He was given Benedryl, in case it was a normal "reaction" to blood products. He was given Demoral to combat the chills. Needless to say he very quickly went off to slumber land. Watching him konk out was kinda amusing. He was fighting valiantly to stay awake. It was almost like watching him be sedated. One moment he was awake and the next he just leaned over and was OUT. The platelets were sent back to the blood bank to be tested for various stuff that might cause this kind of reaction. Everything came back negative. It's the general consensus that his spiking a fever just happened to coincide with the transfusion. The only down part is that he may now be pre-medicated before transfusions. With Benedryl. Not really a big deal, just a bummer.

He slept for several hours and around 6:00 he started to chill, had cold hands and mottled skin. The PA was called in again. Luckily his symptoms quieted down on their own and his fever didn't spike as fast, but it did go to 39.3 C. Demerol did not need to be given. Whew. It's been a few days since he spiked so frequently so they added another antibiotic. Gentamicin. Which he now gets 3x/day. They are thinking that these fever spikes are related to engraftment, at this stage of the game. The antibiotic is once again, just in case. You can NOT be too safe. He had some Tylenol and seemed to get out of that one, pretty well. He's been up since then, it's now 12:10am and he is still awake. No suprise, really. Two days of sleeping ALL day will through off your schedule. His temp is up, but not Feverish. He is creeping there this time, not slamming into a fever.

We had a visitor today, too. Montessori Lori stopped by to visit and bring Candlelighter goodies. Lori, Thank you for stopping by. It's so great to see faces from HomeHome. Also to chat about "regular" stuff. Miss Mary Anne!!! Thank you so much for the craft goodies, the books and THE T-SHIRTS!!!! They are awesome. Can't wait to wear mine, tomorrow. Hmmmm. Wait. Maybe I'll wear it on Monday. It will get more visiblity. 'Cause you know, our Candlelighter's of the Inland Northwest RAWKS!!!. (The new web site is beautiful, BTW.) Thank you, too for sending so many beads. We have reached the point where I need to turn it into a double strand. Seattle Children's requires all parents/caregivers to wear an ID badge, at all times. Except in the patient room. It's this bright orange thing with Patient/Caregiver written all over it. I turned the bead necklace into a very fashionable lanyard. It's quite the conversation piece, too. Thank you, thank you, thank you.


Just for fun. The morning that we had our first ANC numbers I took this picture. Gregory had not yet woken up. Those are his labs, reflecting the ANC on his chest. Yes, I am a dork.


Also, these little shoes have caused so much conversation. When we knew Gregory was going to be spending a great deal of time in the hospital and housebound, I dreamed of Robeez to fit him. They are the greatest hospital shoes. They are lightweight, soft, won't come off and prevent socks from being kicked off, too. You can imagine my surprise when I went to their website and discovered that they came in his size. Know what else? They also come a size LARGER!! I love these shoes!!!


The day the kids left for HomeHome. Man, trying to get all three OffSpring to cooperate for a picture is near to impossible. Can you see the frustration on my face? I certainly can.


To those of you with slow internet connections, I am so sorry.  I got a little picture crazy.  Cross your fingers for counts, soon and relief from these darn fevers.  I'm gonna go and try to convince Gregory to drift off to slumber land.  'til later, Gotta Jet.

Music:Mickey's Clubhouse

Friday. June 26, 2009 ANC & Other Stuff

Yes.  The big news of the day is the arrival of proof of new cell growth.  

Gregory has decided to quit using the potty.  Which is totally OK and somewhat expected.  The benefit to this is that we both receive better sleep.  While it is still interrupted, at least we aren't climbing out of bed to use the potty.  I was reluctant to wake up yesterday morning, when I did, I glanced over and sitting on top of my laptop were labs.  I grabbed them and was in shock and disbelief.


Counts:  ANC ~ 14, Platelets ~ 12, Hematocrit ~ 36.2, Weight ~ 13.9 K


Yep.  Gregory has some new cell activity.  It's normal for this activity to wax and wane for a few days.  So we may see an ANC for a day and then nothing for a day.  Dad, Mom, Curtis and AnnMarie showed up not long before rounds.  They got to experience that and get the good news straight from the providers.  Gregory is STILL febrile.  He spiked in the middle of the night, the night before, a few times Friday and this morning (Saturday) at 6:30.  His tests are still coming back negative so yesterday a CT Scan was ordered.  Here's the kicker.  My child, who has not been taking anytihng by mouth for several weeks, had to swallow 6 ounces of juice/contrast for the CT.  UGH!!  While he had a fever.  The plan was to give him another antiemetic (Raglan w/Benadryl) after his Tylenol and try and get him to swallow the contrast/juice mix.  If this was not successful, we would insert an nG tube and get it in him that way.  Orders needed to be written, CT needed to be scheduled.......  So AnnMarie and I went downstairs for Coffee.


On our way out of the entrance, we arrived to see a caravan of mortorcycles entering the cul de sac.  It's hard to describe the vision and the way it made me feel.  There is something so visceral about the sound of mortorcycles.  There must have been about 150 of them.  The sound of those bikes combined with the amazing news of Gregory's cell and I kinda lost it.  AnnMarie and I just stood there watching these bikes pour in.  They had a police/patrol escort and there was someone there to take a picture of each biker as they arrived.  I had no idea what was going on.  My first reaction was to think that it was a memorial ride of some kind.  I stood there listening and watching, with tears streaming down my face.  The thought of all of these folks coming together, community, was awesome.  Come to find out that it was The Children's Ride.  They parked their bikes in the cul de sac and had a few hours visit at the hospital.  It was really cool.


Upon returning to the room, it was time to get down to business.  Gregory tried to sip down his juice/contrast, but it wasn't working.  He had just spiked a fever and taken Tylenol.  Which he promptly threw up.  He got about an ounce of the contrast/juice on board and couldn't swallow anymore.  It was time to try an nG Tube.  It was a horrible experience.  I had to hold him still while they tried to instert a two foot tube through his nose and into his stomach.  It wasn't happening.  He was really traumatized.  He was pre-medicated with the RagBen and it knocks him out cold.  After trying to insert the tube, he fell asleep.  I roused him and explained to him that if he didn't drink the juice/contrast, we would need to try to insert the tube, again.  In the meantime, we found out that he only needed to swallow three ounces.  Big difference.  I got a medicine syringe and slowly fed him the three ounces, teaspoon by teaspoon.  We had to have this done by 12:30, in order to get the results back the same day.  Thankfully it was acheived.  His CT was scheduled at 2:30 so we had a few hours to veg.  We took the opportunity to nap.  There also was the question of whether or not he needed to be sedated for the CT.  I was really on the fence.  He needed to lie still for about 10 minutes.  He was still so tired that I decided to try it without sedation.  We got in there and there was an anesthesiologist on hand, just in case.  She was awesome.  She had a mobile device with movies on it and she played Cars for him during the procedure.  He was so good.  We left our room at 2:30 and were back at 3:00.  It was quick and uneventful.  Yay!  The results were unremarkable.  Currently, he does not have an infection.  At least as far as the testing, so far, goes.  Which has been pretty extensive.  He also has had really great prophylactic coverage.  They think he is simply feverish.


After we came back, Gregory fell promply asleep and slept pretty much solid until 6:00 this morning.  I managed to get in a hefty nap, too.  We are both feeling quite refreshed, today.


No real news, yet, on today's counts.  Saturday's are a completely differrent pace.  It is now 9:00 and we have yet to round.  I do know that he will be receiving Platelets but not Red Cells.  The differential is not back, yet.


We a relaxing day, today.  Time to spend together, with a little fun.  His spirits are really great today.  He is starting to feel better and better.  Except for these darn fevers.  No real signs of GVH, yet.  I did find out that they consider him engrafted when his ANC is at 500 and discharge is when the ANC is at 1000 for three days.  Along with everything else being stable.  Joan, our PA, thinks this might happen by the middle of July.  Day by day.  Moment to moment.  Dr Manley stopped by, yesterday, too. Just to see how he was doing.  It was great that he stopped in on his first ANC day.  Which I'm sure was not a coincidence.  So.  Until there is more to report.........  'til later, gotta jet.

Thursday, June 25, 2009

This is why I try and post daily.  I'm having troubles remember yesterday's events!  

Thursday, June 25, 2009.  No Counts.  Platelets ~ 35, Hematocrit ~ 28, Weight 13.7
We woke up to no counts.  No big deal, really.  I was not expecting anything at day 14.  His platelets held so well, due to his fevers being less frequent and lower.  He did receive nearly a unit of Red Cells.  The siblings and Mom hung out with us all day.  Curtis and AnnMarie and I grabbed lunch at the cafeteria, regardless of how good/bad the food is, for some reason they LOVE eating in cafeterias.  I think it's the ability to choose at random.  Gregory needed a bath after his blood was done transfusing so we headed off to Magnuson Park for a while.

The weather was amazing when we got there.  The temperature was perfect and the sky was stunning.  It was filled with those clouds that are dark gray on the bottom, flat.  Like they are lying on a piece of glass, with great white puffiness above.  This park is on the water and is filled with all kinds of wildish greenery.  Trees, bushes, grasses and flowers.  Just breathtaking, really.  I sat there are truly watched my older OffSpring at play.  They are so different.  Curtis dives into the playground and is magnetically drawn to kids.  He careens into their play and begins a conversation as if he has been there all along.  It's always with kids that are younger than him, too.  He also gravitates to kids who are a little left of center.  It really is amazing to watch the beautiful akwardness that happens.  He manages to jump into whatever play is occuring and ask some really interesting conversations.  He usually bares his soul, tells them all about what is happening in his life, at that moment.  It's great when kids hang out long enough with him to have conversations and play.  At departure he always tries to secure a future time that they will see each other.  Regardless of where we are, or the likelyhood of it ever happening.  Meanwhile AnnMarie.......  She quietly scans the playground, usually with her hands behind her back, looking for an opportunity to meet someone.  She quietly approaches someone, usually just a single player, starts to play side-by-side and starts a casual conversation.  It florishes from there.  When it's time to depart, she offers kinds thank you's and nice to meet you's.

We returned to the hospital for Gregory's bath and everyone got to see the nakey tricycle riding.   

After the bath, Curtis, AnnMarie and I headed over to the apartment for dinner.  A friend of a friend (Seattle April, 'cause I know an April in Spokane.  *waves to both of you*) made our family a home cooked meal.  OMG!!  Super Cheesey Lasagna, Yummy Salad, Garlic Bread and a bottle of wine for ME!!!!  It was another evening of semi-normalcy.  I got to take a relaxing shower, while the lasgna cooked and we all sat down together for a delicious meal that we all scarfed.  Seattle April:  The kids LOVED it.  Thank you.  Also, thanks for the little goodies, too.  The card was perfect.  Everyone can use a litlle groove, from time to time. 

I've been trying to get this entry out since 9:30 last night.  I'm going to put Friday's event in a separate entry.  It's worthy of it's own.  'til later, gotta jet.

Yay!

We have an ANC!! 14. Update later!

Super short, not very sweet.

Too late to write much.  My picture uploading was behind.  I did that instead.  Will catch up later.  We do not have any counts, yet.  Good night.

This is me. Speaking to you.

OK. I think I am remembering to breath. Today has been, well, amazing, weird, surreal, depressing, celebratory, frustrating......

I'm sitting here trying to find my groove. 'Cause I want to write. Alot. My "Seattle Chillaxin'" playlist is going and I'm ready.

Have I ever mentioned that I'm a control freak. I admit it. Though I'm rather blase' about it. I pride myself with the ability to roll with the punches. Yet I really don't. I just pretend. Until I can catch up and truly roll. The Sibs arrival on Monday really threw me. Truthfully I wasn't even looking forward to seeing them. Why should I see them, when I won't really be present for them. It will only raise my anxiety and add more to my plate. Thankfully, they did come. Monday stressed me out to no end. Those of you that know Curtis REALLY well will get it. Curtis has Asperger's and during the last 42 days, yes, it had been 42 days since we had seen each other, I was beginning to question if he really was a little off. "Am I making am mountain out of a mole hill?" "Am I LOOKING for issues in him, just for attention?" "Can I just not handle my child?" After only 5 minutes with him on Monday, the answer was a resounding "NO, you are not making this up. Curtis is certainly wired differently." It was overwhelming and I forgot how to handle it. I forgot how to compatmentalize it and not explode. I didn't explode, I kind of walled myself off and interacted with everyone in a very protracted way. While madly running around this little room, keeping my hands and body busy. Truthfully, all I wanted to do was to be back HomeHome, quietly cuddling with them and sharing in a communal cry. Not trying to get that connection side-by-side sibling who is fighting for his life, in a very public hospital room. These three beings we have created are my life. Every thing that I do is to get them to a happy, healthy and fullfilling adulthood. Everything. Sometimes I don't think they really know how much I love them and to what lengths I would go to, to secure them. Not in a self-sacrificing way. Never. My take on parenting can be summed as follows:

On Children
Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let our bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

I see every person in my life, this way. We are here to enrich, witness and experience. Together, in our separateness.

Curtis, AnnMarie, my mom, myself and Gregory spent a good portion of today hanging out in the room. Thankfully Gregory had a relatively slow "hospital" day. Counts? More of the same. Fever? More of the same (Day 9) Platelets? Of course! Weight? Holding at 13.9k (Thank you, thank you, thank you) His heart rate is lower, if you can call 130-150 lower. His temperature spikes are quicker, shorter. Not nearly as high, but I think they are more frequent. The sibs and I ran to the book store for some Retail Therapy. I have yet to locate a great second hand book store so we hit the local Barnes & Noble. Which in my heart of hearts, I cannot stand. Yet it has books and books were what I needed. I finally picked up Expecting Adam. I SHOULD have read it nearly four years ago, sorry Tana. I was also told to read A Prayer for Owen Meany by John Irving. It came highly recommended by Dr Manley and one of my favorite nurses, Susanne. I had to buy them 'cause the magic that is Kindle does not have every book. Which I'm totally good with, 'cause I have a romance with BOOKS. The feel, the smell, the weight. The pride in seeing a stack of well loved favorites. Being able to thrust one at a friend and say "HERE! You NEED to read this!" You can't do that with a digital copy. Sorry. I wasn't able to find Hooray for Diffendoofer Day. Shame on B&N. They don't stock it. Shame, shame, shame. So instead he received "Where The Wild Things Are". Here's my confession. I've never read this book. I've been a parent for 10 years and we do not own it. Ever. I'm anxious to curl up with Gregory and dive in. I'm not even going to read it beforehand. We will both experience it fresh and new. Exciting? I think so.

This evening The Sibs and I spent a few hours at the apartment. It felt normal. I cooked food. I used a full size sink. I did laundry, in between. I took out the trash, swept the floor and directed the kids bathing. We sat down at a table, together, and ate. I think it was surreal for them, too. Every once in a while one of them would stop and say "I've missed you Mommy.". Or comment on how they like something I said, which is just how we communicate, but they have been without it for 42 days and we both were reminded what we had been mising out on. I've been physically absent for 42 days, but I've been mentally absent for 121 days. I've decided that the only way I am going to make it through the next few years is to hunker down and focus entirely on our family. All the other stuff will still be there, but it will be fluttering on the edges. In order to keep a hold on my relationship with Curtis and AnnMarie, they NEED to be crystaline to me. The next year with Gregory is going to be intense.

While we were gone, Gregory developed a rash on his belly and legs. Around 6:00pm. I guess the nurse looked at it and grabbed the provider on the floor. This rash seems to be transitory. It appears for a little while, them moves to a different location. Do you know what this probably means????? He is engrafting. Let me repeat that. GREGORY IS PROBABLY ENGRAFTING! While this is by no means the end or even a full victory, it does mean that my knowledge has turned into a belief. I now believe that this will work. As we all know "Knowing and Believing are Two Different Things". We could see some cells tomorrow. I am giddily rejoicing in this incredibly huge moment of his healing. This is a victory worth embracing. I sure hope we see something tomorrow. I respect that this is a "probably". I just really need something, right now.

This year I will not be subjecting you to Gregory's birth story. Which is something I like to do on the OffSpring's birthday's. It just doesn't feel right to do it, this year. Suffice it to say, four years ago today, I was spending hours gazing at this little (he was 6# 2oz, or should I say 2.78 K) bundle of wisdom, wondering what fantastic things he was going bring to our lives. For sure, he has filled us with awe, wonderment, love, joy and yes, peace. Our RockStar has things yet to accomplish. ♥

I feel a little spent.  I feel alot lighter.  I can't wait for AM labs.  ANC, Baby.  Here it comes.  'til later, gotta jet.

• 
  

Music:Carly Simon ~ Touched By The Sun

Birthday!!!!!

Goof ball!!
Originally uploaded by mindithemagnificent

This picture was taken not long before diagnosis.

Gregory Miles Bibb joined our crazy family 4 years ago, today, at 10:34am. What a wild ride it has been. We love you, Munchkin. Now you have two Birthdays! How cool is THAT?

A wee bit disjointed.

Frankly, I don't even know where to start, tonight.  Gregory has had a pattern for the last few days of fever in the middle of the night, clear for several hours, fever in the day, clear for a few hours.  While the last few days have been lower fevers, he is still feverish.  We are on day 8 (yes, eight) of fevers.  If there is not an improvement soon, a CT scan is in our future.  Not because there is likely something to be found, but to rule it out.  

Yesterday was a really big day.  His weight is 13.9K.  It is staying there, too.  At least for now.  His "I's & O's" (fluids in/fluids out) have been fairly equal, so no Lasix in the last two days.  Yesterday was:  Platelets, Chest X-Ray, Methotrexate, Red Blood Cells, new Anti-Fungal.  Also the arrival of the Sibs.  He was cranky/irritable/over stimulated.  It was a hard day.  Oh yeah.  Feverish, too.  While it was great to see the Big OffSpring, it adds another layer of stuff.  I'm not ready, yet, to write about it.  Gregory was feeling so yucky yesterday that instead of a bath, we did these warm wipe thingy's.  They are pretty cool. 

Today he was much better.  We fell asleep last night at 11:00 and I slept solid until 5:30 and Gregory slept until about 10:00.  It was awesomesauce.  The only reason I was up at 5:30 was for Gregory's morning weight check.  Once that was done, I settled back in and slept on and off until rounds at 9:00.  Dr Burroughs had to wake me up!!  Man do I feel great today.  Had a shower, too and got my laundry done!  Today was Platelets and a dressing change.  Dressing changes are so tough on him.  So..... today I asked for a pre-dressing change Morphine bolus.  It made the dressing change much easier.  We also switched from those crappy aqua guard things to Press 'n Seal, for covering his dressing while bathing.  While it is not 100% non-irritating, it is far less irritating.  Jess, if you don't already use it, I would highly recommend trying it.

The Big OffSpring had plans today so I did not see them.  Which worked out totally OK.  Gregory has had a chance to rest and build new cells.  We will see them (the sibs) tomorrow for Gregory's birthday. 

Gregory received some awesome stuff, today.  Miss Terri F made Gregory the coolest Buzz Lightyear fleece blanket.  Thank you Terri!!!  Pix to follow, of course.

A grandma to one of Curtis' school mates sent Gregory a box of party blowers and whistles.  Along with finger & Toe puppets.  Yes my dear, I remember you.  Sophia and Curtis have been going to school together since pre-school!!  Thank you, you are one smart cookie.  Perfect timing, too.  I can't remember what it is called, but Gregory has a small spot on one of his lungs that is collapsing.  It's nothing to worry about, yet, but the whistles and blowers could not have been more timely.  He LOVES to blow them and he is getting great theraputic help!!!!

Gregory has been coughing.  Not due to cold/flu.  I believe it is Mucositis and lung issues.  He just said to me, "Mommy, I have a bad case of The Coughs."  Which was endearing in and of itself, except I have not been able to come up with a good birthday present for him, until now.  He will be receiving this tomorrow:  How I Became A Pirate     David Shannon is from Spokane, a Hutton Elementry Alum and is famous for his "No, David! No!" books.  One of our families favorites it A Bad Case Of Stipes, was triggered by Gregory's statment of "A bad case of The Coughs.", which reminded me of the Pirate one, that we do not own.   I also just remembered that he needs his own copy of Horray for Diffendoofer Day.  Whew!!  Birthday taken care of!!  Can you tell I like books?  Can you also see how fragmented my brain is?

An interesting fact I've been meaning to post:  One of the Chemos that Gregory received was Cytoxan.  It is commonly used against breast cancer.  This will hopefully put into perspective the levels of Chemo that he received.  The amount of Cytoxan that Gregory peed out was equal to what a breast cancer patient RECEIVES.  Spooky, huh? 

Mighty Maddy has been admitted.  She attends school with a family that was a Spokane Montessori family.  She is now our next door neighbor.  Yay!!  If any of you have a moment to spare, they could use some good juju rain.  Thank you!

Gregory's Horoscope for his birthday week, courtesy of the infinately awesome Rob:

CANCER (June 21-July 22): "His heart was growing full of broken wings
and artificial flowers," wrote poet Federico Garcia Lorca. "In his mouth,
just one small word was left." There were times during the first half of
June when I was tempted to borrow those words to describe you,
Cancerian. Now, thankfully, you're moving into a much brighter phase. The
buds that are about to bloom in your heart are very much alive, not
artificial, and your wings, while not fully restored to strength, are healing.
Meanwhile, your mouth is even now being replenished with a fresh supply
of many vivid words.


It's time to let the healing begin.  While the road ahead is still rough, I am hopefull that his marrow is on the mend.  If we did not have an intimate relationship with Tenter Hooks before, we sure do now.  Counts can potentially start showing up by Friday.  *crosses fingers*

• Music:Enjoy The Silence

Tired & Feeling Yucky

Tired & Feeling Yucky
Originally uploaded by mindithemagnificent

There is something about this picture. I didn't do anything special with it. The lighting really gets me. It was taken about 11:30 on the evening of Solstice. Just after the Nakey Tricycle ride. Man. How can your heart break and soar at the same time?

Wow. That was different.

Just woke up.  Can you say six hours straight of sleep????  Ah.  I knew you could.  Update later.

A bit of documantation for posterity.

Hello webosphere.  The last few days have been rather soul tiring.  Gregory has been super cranky and irritable.  At this current time is does not have a fever and has not had one for about four hours.  He hit 40.1 C (104.1 F) earlier today with heart rates in the 190 to 200 range.   I can only imagine how sick and tired he is of being sick-and-tired.  His breathing has also become rather shallow.  His counts for the last two days have been about the same.

Yesterday he received Platelets, Lasix and Red Cells.  Today he received Platelets.  They have pretty much ruled out VOD, except he is retaining fluids.  The threshhold for platelets and Red cells have both been moved to 30.  I guess it's easier on the body to have a good amount of red cells for both fever and fluid retention.  He is retaining fluids today, but no Lasix.  They would like him to have some fluids, in case he gets feverish again.  I did manage to get a few doses of Tylenol in him and I think it made him feel better.  If nothing else, it help his body.  His system has been working triple, time and 1/2.  He has been needy, overstimulated, cranky, irritable, loving, withdrawn.  He also has been talking in his sleep.  A lot.  I guess it's from the Morpine.  I was told that it can cause some pretty vivid dreams.  

Weekends kinda through me off, around here.  The schedule is a little more fluid and it really does feel like a weekend.  I've met some amazing people, while here.  From fellow patients to providers to nursing staff to ancillary staff.  As it is with most things, Gregory and I are THE team on the floor.  Everyone loves to work with us and we love 'em back. 

I took an idea from my friend Tana and modified it.  We have a large piece of butcher paper on our wall.  I have asked that folks give us book recommendations.  One for me and one for Gregory.  If any of you would like to virtually participate, leave a comment here and I will transfer it to the butcher paper.  Pictures to follow, of course.  Tana you will love this, one of my favorite nurses recommended Expecting Adam.  (I'm pretty sure I told you that already, but I wanted to get it down here, for posterity.)  We've had some great suggestions and they are also so very diverse.  I love diverstiy.

Well.  It's now 12:08am and Gregory spiked.  38.6C (101.5F).  Which means blood cultures, now.  When Fiona (love that name!!) went in his line to get blood, the red side is not drawing.  Our first experience with line problems.  We get to try some TPA in the line for a few hours, they draw it out and then they should be able to access that side.  We really need to access that side for Monday's labs.  Since Gregory has been febrile for so long, they are changing his anit-fungal, too.  He is currently on Fluconazole.  They are changing it to Voriconazole.   The caveat to this is that Voriconazole likes to double the Tacrolimus levels.  Which is not a good thing.  So they need to check his Tacro levels, adjust it by half and then administer the new Anti-Fungal.  The blood must be drawn from the red side, due to the fact that the Tacro is administered through the white side. 

I probably lost a few of you there.  Let me digress for a moment.  Some of you missed my Hickman description.  Gregory has a double lumen Hickman Central line.  (BTW- It's now 12:25am and his temp is 39.4C {102.9F})  What I never realized is that the red side is slightly larger than the white side.  Two lumens allow for a larger volume of "stuff" to be infused at the same time.  It also means that scheduling meds is easier.  Some of Gregory's meds cannot be infused at the same time as another med, through the same lumen.  He has two lumens and eight places for "stuff" to be infused.  There are four things alone, that are infused 24 hours/day.  They are:  TPN, which is two items.  Viamins/minerals and lipids.  Tacrolimus.  Morphine.  Which leaves the folowing to be infused along side ot them:  Acyclovir, Fluconazole, Zofran, Atavan, Meropenem, Platelets, Red Cells, Lasix, Normal Saline or 5% Dextrose (this is infused along with his meds.  It's used as a buffer.  He is currently on 5% Dextrose.  They changed it in order to limit his sodium intake due to fluid retention.)  These are the meds he receives regularly.  There are also others that he has received short term.  Dilantin was one.  I can't remember if there have been others.  Are you still with me?  I'm impressed.  I've been meaning to log his meds, for posterity.

He has been breathing fairly shallowly.  While his oxygen saturation is OK, it still concerns me.  It's normal and part of all this.  So.  I have been encouraging him to blow bubbles, as often as he feels like it.  He takes gigantic breaths and blows super hard.  Exactly the kind of activity he needs to keep his lungs functioning.  There is a good chance of fluid retention in his lungs, too.  Can you say pneumonia?  We want to avoid THAT. 

I hope everyone enjoyed their Solstice!!  Gregory spent his Solstice riding nakey on his Tricycle back from a tub at 11:00 at night.  Rather fitting, if you ask me.

He receives his last dose of Methotrexate, tomorrow.  Which means more mucositis and I'm sure more of just feeling yucky.  Of note:  this may be TMI, but I need to log it.  His hiney is all of a sudden super red and painful.  I will be seeking additional help.  We are currently applying two ointments to prevent, but now we have more and I think he needs something else.  Also?  Since he started TPN his stools almost smell like stools from a Breast Fed baby.  Strange.  Makes complete sense to me, though.

Siblings arrive tomorrow.  I'm more anxious than excited.  The more people that Gregory is exposed to, the higher his risk of infection is.  While I can police them, it's easier to police adult visitors.  Of which I will be receiving one tomorrow!!!  Can't wait to see you, Deanna G.

**A very special Thank You to Mrs Bowman's classroom.  Thanks to everyone who sent Get Well and Be Strong wishes to Gregory.  I'll post pictures, soon.  I just have not taken the time, yet.  Also, thank you to each and everyone of you who have helped Curtis & AnnMarie to get through this really strange time in their lives.  From classmates to teachers to school staff to parents.  Thank you, too, to parents who have sent me endearing stories about encounters with my older OffSpring.  The emails have been duly saved and I will probably post them in an entry, just so they are all together.  Also thank you to AnnMarie's class for blessing Gregory every single day.  Even reminding Paula that you all still needed to do it.  Thank you for blessing him during Camp Out.  Thank you to Laruen & Sydney Meany's classroom for the blessing book.  Every single moment that you spend thinking about Gregory counts and it makes a diference.  While he is still pretty sick, he is using all of the strength that you are sending and working super hard to be well.  He's been a rock star, so far.  Keep it coming.  He still has quite a bit of work to do.   

This entry is a little nutty.  A little of this, alot of that.    I'll see you all tomorrow.  Day 11.  There is a chance that we could start to see counts by this weekend.  *crosses fingers*  'til later, gotta jet.

• Music:R.E.M. ~ King of Birds

Real quick.

We are doing good. Just busy. Day 10!!

Update later!<3

Hipsterville

Ugh! Alright. I have been dragging my feet. The prospect of VOD is kinda freaking me out. Gregory had a two hours of temperatures below the "danger zone" (Thank you, Top Gun). Then it decided to climb back up. A little bit ago, it was 38.9 C ( 102 F). His heart rate is climbing, too and I think it has yet to peak.

Today's Counts: HCT ~ 30.6, Platelets ~ 23, ANC & White ~ still zero, Weight ~ 13K

He is still showing negative for any infection/bacteria via the blood cultures that are taken every 24 hours. We entered Day 4, this afternoon, so we will have cultures again at 3:00 tomorrow. He was extremely cranky and irritable today. He was up fairly late, last night and I'm hoping that today's mood was due to that. If it continues tomorrow, we will be bumping his Morphine, again. He is developing new sores in his mouth, yet he is taking small sips of fluids and wants so desperately to eat. He had a few nibbles of an apple slice, today. Which all-in-all is quite amazing. Typically, kids at this stage have absolutely zero interest in food. Today he had platelets, Lasix & red cells. They are treating him AS IF he has VOD. This treatment is prophylactic. They are keeping his Hematocrit above 30. I guess by beefing up the red cells, it encourages the vessels around the liver to conitinue to process fluids through it. They have replaced his Normal Saline (which runs 24/7 and buffers his meds) with a Dextrose solution. Keeping his sodium levels lower decreases the risk of fluid retention. He is receiving Lasix whenever his input/output are not level. Or we have a jump in weight. They are not saying he has it, it's simply precautionary.

I found out the other day that the attendings are on a two week rotation. It used to be four. So....... we lose Dr Manley this Sunday. He is an awesome doc. All around really good guy. Thankfully our PA, Joan Suver, stays until the sixth (?) of July. I really like her, too.

Gregory was up for most of the day today, too. This eveing he asked to wear one of his hats. *giggle* I was beaming with a little bit o' pride. He looks like such a Hipster!



On his hairloss: I have been lucky. I have had nearly four months to get my head around all the baggage that comes with the vision of a bald cancer kid. I wasn't exactly sure how it would hit me, though. Thankfully the eyebrows and eyelashes will take longer to come out. That will be a whole other look. I still cannot get over how cute he is!!! Here we are, snugglin'.


We webcam'd with the sibs today and Gregory came to life.  Like wow!  He was giggling, goofing and making faces.  Lots of blowing kisses and blowing hugs.  He knows they are coming, but he won't really get it until they are here.  They are going to want to mosh all over one another and I NEED to prevent that.  Despite the fact that they are family, they are still school aged and habour all kinds of microbes that could prove to be a really bad thing for Gregory.  With absolutely no immune system, I CANNOT be too careful.  Which means that I am even afraid to get too close.  What if they pass it to me, then I  pass it to Gregory?  That would suck.  Which also means that for now, I don't feel comfortable taking the OffSpring to crowded, enclosed stuff.  Like the aquarium or a movie.  'Cause I could still catch something and bring it back to the hospital.  I also do not want to be too far from the hospital.  I am planning on spending a few hours with them in the morning and agian in the later part of the day, each day that they are here.  We can do things that are close.  There really is a lot to do.  They will make another trip when we are outpatient.  We can possibly go to an attraction, at that time.  One stop that is a "must do" is Beth's Cafe.  Best greasy spoon.  EVAR!  

This is getting wordy and I'd like to snuggle.  'til later.  Gotta jet!

• Music:Imogen Heap ~ Hide and Seek

Who knew he'd be so flippin' CUTE?

Gregory and I were tired of eating hair and being itchy. All that was left was that downy hair "under" hair. We shaved it off today. Bald IS beautiful.


More here.

• Music:PBS ~ Electric Company

Still Feverish.

Gregory is still feverish.  (I feel like I'm watching Zaboomafoo when I say that word.  Like Zaboo is talking about being Feverish)

Still unsure of the cause.  They have pretty much ruled out VOD, at least for now.  Which is a huge relief.  I think we are in Day 3 of Feverish.  His Morphine was upped again, today.  Which made a huge improvement for him.  He was up and "active" for several hours today.  Even taking sips of water and juice.  Despite a fever and mucositis and everything else.  His heart rate is still high, currently 175, with a 38.9 C (102 F) temp.  His heart rate goes up along with his fever.  When his rate starts climbing about 185, he's getting hot.

I have more, but I  just don't have the  energy, for now.  Hopefully tomorrow I'll have some down time.  Today I used it to run a few errands and we took a two hour nap together.  'til later, gotta jet.  I'm gonna get some z's.

• Music:Yeah Yeah Yeah's ~ Y Control

Just so you know.

Nothing Earth shattering to report.  Busy day/night.  I'll catch you up tomorrow.  Er.  Later today.   Gotta snag some Z's.

• Music:The Dresden Dolls ~ Bad Habit

He is simply febrile. *crosses fingers*

Gregory has been feverish since 12:30 yesterday. Bouncing between 101.8 & 104.4.

This mornings counts: HCT ~ 25, Platelets ~ 12, ANC & White count still nonexistent. This mornings weight, 13.3 K.

Fever. There are four reasons he could be febrile.

1. He is simply febrile. *crosses fingers*
2. GVH
3. Infection
4. Veno-Occlusive Disease

They added another antibiotic and more blood cultures were obtained. He received platelets, this morning. He is currently receiving blood.*

Weight retention/gain. An indication of VOD is weight gain. Gregory's weight is up and his urine output is down. Which is not to say he has VOD. After platelets, this morning, he received Lasix (Did you know that Lasix is named as such because it Lasts Six Hours???) Shortly thereafter he did start peeing. A lot. I'm not sure exactly what that tells us, but at least he is peeing.

He received his Methotrexate and his Morphine dose was raised. He has a couple sores in his mouth and he said that they hurt. Today's Methotrexate is going to do a number on his Mucositis, so it is good to get him on a better playing field.

I posted more pix over at Flickr. Fair warning: From this point forward, at least for a little while, the pictures might be hard to look at. Yet, they speak his truth and his Odyssey.


*Interesting:  Due to Gregory's size he doesn't take a full unit of Red Cells.  Since he will be receiving blood frequently, they split it into four, transfuse two and keep the other two for later.  They are good for three days.  Which also means that we don't need a type and cross, nor do we have the 3-4 hour wait to receive the blood products.  Cool, huh? 

• Music:The Killers ~ Read My Mind

Febrile

I started this last night at 9:30.

Hello, big, wide world...... 

Day 5.  We are 5% of the way to HomeHome.  Today's biggest highlights?  Hairloss and Fever. 

Today's counts:  HCT  ~ 31, Platelets ~ 15, White Count and ANC ~ too low to report, nonexistent.

He received platelets, of course.  His little body is working so flippin' hard.  His morphine drip was increased, thankfully and today he had no need of an extra burst of pain meds.  He did spike a fever, though.  38.8 C (101.8 F).  Never a fun event in Leukemia World.  Blood cultures were obtained and he was dosed with Tylenol.  It seems under control, for now.  When his ANC went below 500 he was put on Ceftazidime 3x/day.   When he went on the Morphine drip, they added a pulse ox monitor while he is sleeping.  Yesterday/last night his heart rate was between 130 & 150.  During the day, today, it's been between 150 & 175.

Current update:  It's now 11:30 and his fever spiked, again.  His heart rate is between 180 & 199.  His temp is 39.9 C (103.8 F).  He is totally sacked out.  The only reason we would give him Tylenol would be to make him comfortable.  The provider on staff is not overly concerned about his heartrate.  Waking him up to take Tylenol, at this stage, is a guarantee of one upset kid.  It's better to let him sleep it off.  It's no wonder that they do heart studies.  The work that his body is doing is hard to fathom.  I learned a new word today.  Well, the meaning of a word.  Febrile.  It means feverish.

They raised his Morphine levels, today.  Thankfully.  He is much more comfortable.  He will receive his third dose of Methotrexate, tomorrow.  His last dose will be on Father's Day.  The Methotrexate is another major contributor to his Mucositis.  Which means we really haven't even begun.  He has a few sores in his mouth and is no longer using his pacifier.  We started using the suction thingy and saline.  He thinks it's pretty cool, which means he is willing to use it.  Still nothing by mouth, today.  Except Tylenol and he did take his Ursodiol.  At least the morning dose, and promptly heaved it all up.  They have also adjusted his antiemetics to every four hours.  Basically he is getting an antiemetic every two hours.  Have I mentioned that his chemo regimen is heavy duty?  He still occasionally heaves.  It sucks.  Or should I say:  It blows.

We spend so much time facing, embracing one another, while he is on the potty.  Today, during such a time, we spent several minutes with both of us pulling handfuls of hair out of his head.  When I say "pulling" I mean, simply removing them.  They come out without any resistance.  Gregory is getting pretty sick of eating hair.  I'm getting sick of having it stick to my chapstick.  *thpt*  Chemo treatments should come with complimentary lint rollers.  Lots of them.  We have baby fine hair EVERYWHERE!  

Current update:  It's now 12:05 and his temp is 40.1 C (104.2).  Wow!  The nurse didn't batt an eye.  I asked her at what point do we panic.  Her response:  "Not at 40.1."  Brilliantly   answered. 

Good morning.  It's now nearly 8:00 on Wednesday.  Gregory and I crashed together not long after the above sentence.  He did start to sweat around 1:00.  I guess that technically his fever broke, but as of 6:30 this morning, he is still running a fever.  38.8C (101.8F) to be exact.  Which may not seem like much of a fever, but with no immune system, it puts it in a different ball game.  He is being closely monitored, for the time being. 


On my emotions.  For now, I'm in Warrior mode.  Everything is locked down and contained.  My disposition is still snarky and upbeat, though.  Once things level out, I'm sure it will change.  I  just need to be present for Gregory in order to get him well.

I'm going to try and catch a few z's before rounds.....  'til later, gotta jet.

• Music:Matchbox Twenty ~ Push

Today was the day.

Gregory's day was a little more challenging, today.  When he woke up, this morning, one of the first things he said was that his mouth hurt.  He opened his mouth, showed me where and asked, "Mommy?  Will you kiss it?"  Of course, I did the best that I could, to get to it, and he was very satisfied.  The skin of his trunk is getting darker by the day.  He also has these spots that literally, look like pen marks.  Black pen marks.  When I first noticed them, I tried to brush them off and then did the lick-finger-and-rub thing, before I realized that they were pigmented spots.  When I showed them to the team, the doc also tried to rub them off, not believing they were pigment.  The PA looked at them and said, "That's weird."  Not quite sure what they are all about! 

Counts:  HCT ~ 32, Platelets ~ 25, White count and ANC is so low, it's unreportable.  Basically, zero.  YAY!!

That is exactly what we want. 

He has been on a Pulse Ox monitor since he went on a Morphine drip, yesterday.  His heart rate is so high.  Blood pressure is still good, though.  He is also trying really hard to spike a fever.  We are monitoring his temperature every hour to every half hour.  The theory is that the elevated heart rate and temp and in direct relationship with his non-existent immune system.  His body is majorly working overtime. 

His hair started falling out today.  Which, ironically, I'm grateful for.  Gregory has done so incredibly well through this, so far, that THOSE thoughts creep in.  "Did he get ENOUGH chemo?"  "Did it work?"  The arrival of hair loss is a sign that YES he did get full strength chemo.  His side effects have been so well managed, I have to remind myself that not only did he get full strength chemo, he received one hell of A LOT of chemo in a very short amount of time.  I can't help but run my fingers through his hair to help expedite the evacuation of his hair.  I am anxious to be at that place, where being bald is beautiful.  Where people can see him and KNOW that he is a cancer patient.  Where fellow families don't look and him and go, "I wonder what HE is here for?"  It's almost like getting a tattoo, a transitory one that proclaims his current Odyssey.  "Yes!!!  I'm a child with Cancer.  Hear my warrior roar!"  *rawr* 

A note regarding hairloss.  When the hair does come out, there is no folicle.  There is no root.  It simply ceases to be attached to his scalp.  There is no sebaceous plug at the end of the hair.  Why all the comments on this?  It shocked me.  I failed to realize that the chemo would anhilate that part of his hair.  I pictured whole, healthy strands of hair.  Why?  Dont' ask me.  It's rather obvious that the reason it comes out is because it's NOT healthy.  *shrug*

I knew Gregory would be on a ton of medications.  I was totally prepared.  What I was NOT prepared for was medical decision making, regarding medications.  Antiemetics:  Which ones, how often.  Morphine:  How often.  Benedryl:  How often.  I did not realize that I. Me. Myself, would be reading his cues and determining if that was Pain, Nausea, Itching.  I did not realize that a morphine drip is not a simple pain releif.  You also get a Morphine boost, when you need it and if it is over so many a day, then the dosage of the drip goes up to accomodate it.  Which anit-itch do you want to use?????  HUH?  I do not make snap decisions very well.  I need ALL the facts, figures, options and results available before I make a decision.  Tomorrow I am going to work on putting together a list of all his meds.  They are all necessary and NOT permanant.  They are simply plentiful, for now.

We did get a nap in, together today.  Also?  Early this morning, before we "woke up", it was one of those "it's morning but I'm not ready to wake up, yet" moments.  Gregory and I were sleeping facing one another, he says to me, "Mommy, roll over."  Me:  "Why?"  Gregory:    "Cause, I don't want to smell your breath."  Pretty cute.

Today he did not want to do ANYTHING!  No TV, no movies, no Leapster, no laptop, no tricycle, nothing.  His little body is working so incredibly hard to figure out what is going on and make it right.  Yet, he has these oh-so-heart-breaking moments of absolute tenderness.  We spend an awful lot of time face-to-face, while he is on the potty.  We are either forehead-to-forhead or he has his cheek resting against my shoulder and his arms wrapped around my neck.  We love, rub, pat and comfort one another.  Despite the location, they really are some of the sweetest moments.  It is where I run my fingers through his hair and where I first noticed his hairloss.  Thankfully we brought his potty seat and his Ikea step stool (doesn't everyone have one???).  The step stool is the perfect place for me to perch while loving him up.  Speaking of which, I'm gonna go do that now.

Thank you to everyone who offered to get Gregory his Dum-Dums and thank you Polly for just "gettin' it done.". 

'til later, Gotta jet.

• Music:Oingo Boingo ~ Dead Man's Party

OMG ~ Thank you!!

An anonymous drop off surprise!!!!!!!!!!!!!!! Thank you, thank you, thank you!!!!

My morning, so far.

Gregory is peacefully sleeping. At least I hope it's peaceful. He is trying to spike a fever. *grrrrr* His ANC is so low, now that it's not even reported on the labs. His heart rate is also elevated. Rounds are soon, I'll find out more.

Here's what I'm doin'..................

Me no dum-dum, you dum-dum. Bring me gum-gum?

Gregory's counts are finally (as if it's been forever, it just feels like longer) taking a hit. Except for his HCT. I spoke with the doc today, and I guess he DID received Red Blood Cells in his Stem Cell Transplant. Which is why his HCT and Red Cells are so high.

Today: HCT ~ 35, Platelets ~ 14, White ~ 0.4, ANC ~ 388 (Still has all his hair. Just a status report.)

It's wild to look down his labs and see a bunch of Zeros. Which is the idea, remember. Once we hit rock bottom, they will "rescue" him with transfusions. I guess they use nothing but O type blood at that point. I haven't asked, yet, but my best guess would be that you could type it and see how much is from transfusion and how much he is producing. Which I find quite clever.

Considering that his ANC is so low, they started him on an anitbiotic. 3x/day He was also started on a 24hr/day Morphine drip. There are eight locations for Gregory to recieve some kind of med/TPN/blood product, on his IV. They are all quite active. There is only one slot that is quiet. That won't last long, though. It's available for blood products. Greogory will be tearing through those, pretty soon.



Today was his second dose of Methotrexate, too.  Two more to go. 

His Mucositis is progressing.  Why all the info about it.  'Cause it's really bad news.  Check the link.  Yes, Gregory had Melphalan as part of his Chemo.  For posterity, the mucositis is affecting his bodily functions.  He is now wearing diapers 24/7 (they are adjustable at the waist for comfort and irritation/itch releif).  We are using two barrier creams.  I never thought I would ever be using diaper creams on any of my children, again.  He is handling it SOOOOOOOO well.  The hourly bathroom trips are getting tiring, though.  He continues to itch and it seems as if it is migrating along with the progression of his skin's reaction to the Melphalan.  The first areas to turn red and itch were the scalp and groin.  They are beginning to flake and peel off.  I now have an idea of what it might look like, on the rest of his body.  The itch has migrated to his anus (there really is not delicate way to put this).  I will be so releived when it passes.  He is on benedryl every four hours and at the end of a four hour dose, he is READY for the next one. 

He slept for most of the day, today.  He perked up around 3:30 and crashed at 11:30.  Our sleep cycles are going to be so messed up. 

We don't have any company tomorrow and I am looking forward to crashing with Gregory for a couple power naps.  Not that I couldn't nap with Mom or Dad here, I just can do it w/o a second thought.

I have a plea.  If there is anyone local who could find something for me I would LOVE you for it.  Gregory would, too.  He has not/will not be eating/drinking for a while.  Yet he loves lollipops.  I was thinking that a bag of Dum-Dums would be awesome for him.  They are small and come in LOTS of flavors.  If someone could find a bag and swing it by the hospital, it would be fantastic.  I can run close errands, but I don't feel comfortable leaving for more than an hour at a time. 

I have plenty more rolling around in my brain, but I'm gonna git.  I'm a little tired.  'til later, gotta jet.

A whole lot o' nothin'

What a great, lazy day. 

All in all, Gregory was kept comfortable and mostly sleeping today via "Greater living through chemistry"  (thanks, Tana).   The antiemetics, Morphine and Benedryl kept him asleep, most of the day.  Which is good, cause he really needs his rest, for now.

For the record:  Counts: HCT ~ 37, Platelets ~ 25, White ~ 1.3, ANC  ~  1274

It's been a day of general housekeeping.  Shower &  laundry.  A few errands.  I finally hit the local hardware store and picked up a step stool for Gregory.  These beds are so high off the ground, that he cannot get in and out of bed without help.  Even when he is feeling well.  While he is not too motivated to get up and down by himself, for now, the time will come when he can and the extra little bit of activity will do him good.  It will also be serviceable once we get to the BMT apartment, too, and at home.  I've been racking my brain, trying to figure out why the hospital doesn't offer something like this.  Then it dawned on me that it is probably due to liability.  What if he fell, using a piece of their equipment?  I get it.  Yet it is a great piece to use for physical therapy and autonomy.  I was going to hit a store on the other side of the U-district today.  I was approaching 45th and there was a huge sign on the sidewalk,   "UW Commencement 11am-6pm.  Expect delays"  I'm really grateful that they posted this sign.  Getting caught up in that mess would have been............ *shiver*

It's been super quiet down at our cluster.  It holds five patients and there are currently three.  Only one nurse, too.  *crickets chirping*

I have a feeling that Gregory's mucositis is quickly traveling up his throat and into his mouth.  He has been swallowing like it hurts, 'ya know the grimace.  His saliva is also getting thicker.  I need to pick up a bag of those small dum-dum lollipops.  He is not hungry, but I think he wants some flavor.  I picked up a few lollipops from the Tulley's downstairs and they are a hit.  I'm thinking lots of flavors to choose from would be the ticket.

I keep waiting for his hair to fall out.  I know it will happen.  I'm just anxious about it. 

Well, gotta go snuggle with the munchkin.  'til later, gotta jet.

• Music:Bicentenial Man