Up, Down, Inside Out

Yet another sleepless night.  There is no reason for it, either.  At least no reason that I  have any reasonable control over.  Even though I've never truly had a blissful night of sleep since we became parents, this is different.  Constantly on the watch.  Watching for the next thing.  Always available for Gregory's slightest need.  Don't get me wrong, I do not cater to him nor coddle him.  It's just a heighten awareness of him. 

This has been a weird week.  Gregory has been fan-freaking-tastic.  Seriously.  I've not seen him like this in months.  He is strangely motivated, curious, active.  Acting like any "normal" four year old should.  Busy, busy, busy.  In everything, painting, reading, getting his fluids and remembering he needs to drink, eating really well, standing on the beach and throwing rocks forever (Sunscreen, sun hat and exam gloves included, of course.).  Very verbal and hardly needing his pacifier.  He's finally starting to articulate his words better and I can see him making an effort to say things correctly.  Correcting himself along the way.  Dressing and undressing himself, not complaining when it's time for a bath or to brush his teeth.  Behaving exactly like he "should".  It's amazing to witness.  It takes  my breath away, too.  I'm not completely trustful of it, though.  He is still on a high dose of steroids and his immunosuppression med.  When his GVH flared in November he was at 13mg prednisone every other day.  He's currently at 20mg prednisone every other day.  We won't be down to 13mg until September.  I'm taking this time with joy and caution.  Not knowing what is really lurking under there.  Yet for now, he's learning, experiencing, exploring.  I'll take it.

His labs on Monday were stellar.  Hematocrit ~ 40, Platelets ~ 256, White Blood Count ~ 5.1.  Yes, he did have a transfusion a week ago Monday which brought his hematocrit up to 37, but his counts are recovering at a rate that I did not expect.  His oxygen saturation was at 94.  Once again, he is exposed but solid.  So thankful for that.

Dad's surgery was Monday.  (Triple Bypass)  He is still in ICU but doing as expected.  Another example of one day at a time.

Gregory's disease, Juvenile Myelomonocytic Leukemia (JMML), is a rare disease.  I know we hear that a lot when it comes to Childhood Cancer.  There is so little information on it that I can't even accurately say how many cases are diagnosed in a year.  I've heard as low as 25 and as high as 50.  That's not very many.  The point being.......  we JMML families scour the internet for each other.  Eventually we find each other and create a bond.  No two cases are alike.  Every single kid's experience is unique.  There are two families that have been heavy on my radar.  They are at opposite ends of this beast.  I mentioned Cameron in my last entry.  He had his third BMT recently.  He has engrafted (ANC over 500 for three days in a row.) and his peripheral blood chimerism show that he is 100% donor.  This is amazing news.  I had a chance to talk to mom Tuesday night and we quietly cautiously celebrated.  Acknowledging what great this new is and honoring the unknown road still ahead.

I haven't mentioned Dylan.  They use FaceBook for updates.  I can't remember the exact dates of Dylan's diagnosis and transplant.  Prior to day 80 post transplant they found evidence of JMML.  From that point on he had one complication after another.  He was receiving his chemo for his second transplant this past weekend and his body just couldn't do it.  Dylan died Monday, May 24th at 12:04AM.  When I first "met" his mom, she and I marveled at how much Gregory and Dylan looked alike.  It's quite spooky.  Several of the kids that I've heard of are fair haired & skinned.  I've often wondered if there is something to that. 

Add Gregory's week, Dad's surgery, Cameron and Dylan.  Feeling quite Schizophrenic. 

There are many people who just don't get online social networks.  I've learned of two amazing artists this week from my social network.  This is why I LOVE social networks.  First off is Serena Ryder.  Holy cow.  BNL had a show recently, Serena opened for them and a few people have recommended her music.  She is on brilliantly talented woman.  I did find myself wanting a button that said "Pop" that I  could turn down.  At first blush it sounded over processed, I wanted to turn up the "Raw" button.  Then I realized that she is just so stinking good.  She's from Canada, released a few albums before this one.  I'd love to get my hands on her Canadian releases.  Before this there was a recommendation to check out Ann Ternheim.  She's a Swede.  Her music has a melancholy feel to it, it's clean, heartbreakingly written and performed.  These two ladies are worth every penny of that 99 cent per track download.

Beyond excited to get to Seattle.  Can't wait to see everyone and anxious to see what his tests will reveal.  Aside from the status of his marrow, evidence of disease and percentage of donor, we will be looking at his bone density, his teeth, his growth hormones, his immune system, his GVH.  The steroids cause bone damage.  The chemo and drugs wreak havoc on his forming adult teeth and his bodies ability to produce growth hormone.  He is still immunocomprimised so we won't get a clear picture of his immune system.  All of this testing probably won't yield any information that will require action.  It's simply so we can get an idea of where he's at and what might be ahead for us.  Kind of a baseline.  In case anyone is wondering, I have no idea when Gregory will be off his meds.  His prednisone taper goes through December and it only goes down to 10mg every other day.  We have no idea if he will have GVH issues as we decrease his prednisone.  One day at a time. 

I've run out of steam.  More later, gotta jet.

Posted via web from MindiTheMagnificent

Screw it, I'm writing tonight.

I have a great desire to get back into writing.  It's been a challenge.  Ever since our winter admit, Gregory has acquired my circadian rhythms.  I'm lucky if he's asleep by 12:00.  I've lost those few hours, while he's sleeping, to bleed into the interwebs.  I've also been trying to grab sleep, restore.  It's still interrupted, night time fluids through his G Tube, diaper changes.  I'm also relishing this time that we have together.  I know that once we get HomeHome, we will have several weeks of chaos and adjustment.  I've been spending a great deal of my time reading, catching up on movies and KNITTING!  I've finished more projects since the middle of February than the entire 12 months before.  I have a little room in my brain for new projects and skills.  I'm terribly addicted to the craft.   A girlfriend of mine has a blog entitled "Itchy Fingers".  That is exactly what it's like.  My fingers itch for the sticks 'n string.  I've also discovered the absolute divinity of hand knit socks.

Since the beginning of 2010, I've also been working through some physical and mental stuff.  In March, it all came to a climax.  (Ha, ha, you'll get it in a minute.)  I've been living so long on stress and anxiety.  FEAR.  Frustration, exhaustion and isolation.  The physical side effects have been increasing.  I've slept, tried to sleep, napped, restlessly turned on more sleep surfaces than I'd like to recount.  I carry my stress in my shoulders, neck and the base of my scalp.  Lots of tension pain, migraines, dull continuous headaches.  Then........  (Potential "Too Much Information" ahead.  If sex talk makes you uncomfortable, please skip ahead.)  In March I started having brain exploding, head splitting, instant migraines at the time of orgasm.  I'm talking the worst headache pain I have ever experienced.  So fast.  They remain with me for 24 hours, too.  It took three occurrences for me to figure out that something needed to be done.  I figured they were tension, stress and anxiety induced.  I surrendered my pride and headed to the doc for some mental health.  Or as a good friend calls it, "Better living through chemistry."  I started Zoloft the middle of April.  I noticed relief, almost immediately.  The only draw back is that I felt dull, vacant and blah.  For the short term, it's worth it.  The last few weeks, I have begun to feel like I'm coming out of it.  Starting to feel a little better.  I expect to remain taking it until we have returned HomeHome and had several weeks to acclimate.  I'm grateful for not having to consume so much Tylenol and Excedrin.  I can't take ibuprofen or Aleve.  It's nice to not be in constant pain.  It's also nice to not have Coital Celphalgia!

Now.  About Gregory.  We were discharged, back to the Water Retreat, on Monday.  May 17.  His blood cultures have remained negative for the Gram Negative blood infection.  We left with IV antibiotics.  Levaquin, an hour long infusion, twice a day.  Totally manageable.  Little did I realize, at the time, that last a week ago Wednesday, Gregory was experiencing Septic Shock.  I knew it was serious, I just didn't realize how serious.  I also think it was a bit of "Eh, what's a little septic shock compared to everything else he's been through."  This experience has certainly altered my perspective.  After returning to the Oncology Unit on Thursday, the pain set in.  I don't know it it's Gregory's GVH or the fragility of his body or the fact that this bacteria is really bad, but the headaches, belly aches and butt pain set in.  Hard and fast.  We had to use IV Fentanyl for pain relief.  It does a great job, but doesn't last for very long.  He received two doses Thursday night and one Friday morning.  As I've mentioned before, Gregory has not sat'd (Oxygen Saturation) over 92 for several weeks.  Thursday he dropped to 88.  He started blow-by oxygen.  They turn on the oxygen and set the tube near his face and the oxygen "blows by".  It brought it back up to his "normal" 92 range.  Occasionally hitting a 95.  (normal is 99-100)  Thursday night, Friday night and Saturday night he did the same thing.  Sat'ing in the high 80's, blow-by oxygen.  He did have his chest CT on Wednesday morning and the only thing it revealed was pulmonary edema.  Fluid in his lungs.  Mild.  There were no signs of Lung GVH, but I'm not ruling that out as a culprit, yet.  We aren't sure of the cause of the fluid in his lungs.  It very well could be related to his blood infection.  During the height of his infection, his body quit producing urine.  He was retaining fluids.  We used Lasix to flush his system.  Still no help for his oxygen.  This infection to a real number to his marrow.  His platelets and red cells took a hit.  His white count soared.  Sunday his hematocrit hit 22.  (number of red cells in his blood, these cells carry oxygen.)  It was decided that Gregory could use some help.  It would take too long for his cells to come back on his own and the extra red cells would help with the oxygen desaturation.  He received a red cell transfusion on Sunday.  (he also received Lasix, after the blood, to flush fluids)  Sure enough, it did the trick.  He did not desat Sunday night and his spirits were better.  Monday we got the all clear to check out.  He still is in the low 90's range, though.  We will do a repeat CT in a few weeks, unless he gets one when we go for his one year follow up.  We leave in just over two weeks.  So exciting. 

Something else that's strangely exciting.  I haven't mentioned it much, but Gregory's central line has been an absolute pain in the neck.  We cannot use it to draw blood without using TPA, which breaks up the clots/sheaths that form at the entrance of his line.  We got the go ahead to have a subcutaneous port placed, after we get back from Seattle.  It's scheduled for Thursday, July 1.  Why is this exciting?  Gregory's Hickman is covered with a dressing.  The lumens (the ends of the line) and his dressing cannot get wet.  Bathing is a chore and a half.  Gregory has not had a real bath since February of 2009.  He has not had the pleasure of splashing water, bubbles and tub toys.  Bath time is quick, down and dirty.  "Get 'er done."  I'm looking forward to leisurely bathing and no more weekly dressing changes.  It does mean that his blood draws will require a poke, but with the use of skin numbing cream, I've been reassured that it's fairly painless and quick.   The benefits far outweigh the brief pain. 

This last month has also been filled with really crappy news.  

• A local family, who's daughter completed treatment for ALL a year ago, their other daughter was just diagnosed with the same cancer.  Anna & Madeline 
• A fellow JMML kiddo, Cameron, had his third transplant since March of this year.  I love this family to pieces. 
• Another local family, who's daughter Makiah needs a new liver.  Liver cancer, you suck.
• A fellow Seattle Children's family.........  Rhema just relapsed with DSRCT. 

There have been a few deaths, families struggling through treatment, families learning to live post treatment.  It's never ending. 

I intended to write about our PICU experience.  The memories are starting to lose their clarity.  The PICU is certainly another world.  The Hem/Onc unit in Spokane is so small, compared to Seattle.  It's also very plush.  When we returned from Seattle and had our first post-Seattle admit, the quietness of the unit was a little unnerving.  Stepping into the PICU brought that Seattle feeling back.  It didn't scare me or make me uncomfortable.  I've been living in hospitals for too long.  I was able to stay with Gregory and sleep in his room.  As longs as the kids are not on a ventilator, ONE parent can sleep with them.  While Gregory's blood pressure was better through the night, he was still really sick.  They weaned the Dopamine that night and he spiked another "chilly" fever.  Around the time that he was to receive his nighttime meds, the unit's vibe changed.  Dramatically.  The rooms are set up on a perimeter around the nursing station.  While patiently waiting for his meds, I glanced across the way.  On the other side of the unit.  This is where all the nursing staff was.  I could only see the right hand third of the room.  Which included the monitor for all the equipment that was attached to the child.  I have not idea if it was a girl or a boy.  Infant, young child, adolescent.  The only thing I could see was the constant rotation of nurses, taking a turn performing chest compressions.  The monitor, blinking an angry red.  Turn after turn of the nurses.  From the time that I noticed what was going on, somewhere between 30 and 45 minutes passed before the CPR stopped.  They were not able to save this child. 

It was not what I had imagined in my mind.  There was no loud noises.  No screaming monitors.  No frantic movements.  It was quiet, controlled.  I expected wailing from the family.  There was none.  It was sad, quiet.  I have no words for how it made me feel or how it makes me feel, now.  I feel like I "witnessed" something.  With respect, awe and reverence.  As this was happening, I was thinking about my ability to do that as an RN.  There are three areas I'm really interested in working.  Pediatric Oncology, PICU and NICU.  My interest has not changed, it's only increased.  These nurses are there for some of the hardest things that life throws at us.  They work through it with efficiency, competency and cooperation.  It was a well choreographed dance.  My desire to get my RN has not changed.

Through all of this, we have had something else thrown at our family.  I haven't mentioned it yet, out of respect to my parents.  I'm mentioning it now, simply because they (we) need some healing vibes.  My dad has not been feeling too great.  He has a family history of high cholesterol and heart attacks.  He has high cholesterol.  He works a physical job.  The last year or so of stress has not been kind to him.  He went in for a check up a few weeks ago, further testing this past Tuesday.  On Monday he is have Triple Bypass Surgery.  Regardless of family history, it's come as quite a shock.  Dad is in excellent physical health.  It's going to be a long recovery.  He's not one to sit quietly and heal.  For anyone who is reading this and wants to be at the hospital...........  please don't visit Monday or Tuesday.  Please let Mom and Dad have their time and privacy.  If you need further information, please drop me a line and I'll get back to you.  Please keep Dad and Mom in your thoughts next week.  Especially Monday and Tuesday. 

Gregory goes back for Labs and Exam on Monday.  He's been feeling great.  Very active and happy!  This is an extremely LOOOOOOONG entry.  Thanks for hanging with us, hanging on and hanging in.  Much love to every last one of you.  More later.  Gotta jet.

PS ~ For posterity, while Gregory was going through the worst of his infection he was receiving 30mg of hydrocortisone everyM 8 hours.  He also received IVIgG on Monday the 17th.  His IgG was 355.

Posted via web from MindiTheMagnificent

Whew!

In case you've forgotten how quickly things happen/change in the BMT/Childhood Cancer world, let me tell you a little story......

Gregory and I  have been plunking along these last few weeks.  Getting through the days, counting down to Seattle.  Working through raging steroid emotions, a seriously declining appetite.  Weekly blood draws.  Things have been boring.  Counts are stable.  Health has been good.  Boring is great.  Then.

We had our regular weekly blood draw on Monday morning (the 10th).  Everything is great, cultures have not grown anything.  Tuesday night around 9:00 Gregory said he was cold and started shiver.  Not just a little "I'm chilly" but full body, teeth rattling, fetal position chills.  He's done this before and I  knew what was going on.  I took his temp.  98.4.  Waited two minutes.  98.8.  Then he clutched his head in the throws of a big headache.  I called the Hem/Onc unit and they put a call into his doc.  I started to pack.  Frantically.  Ten minutes later I retook his temp.  101.5  Doc called, sent us to the ER.  When Gregory starts to chill like that I KNOW that a hard, fast and big fever is on it's way.  

We hit the ER around 10:00.  Everything takes so long when you need it to be immediate.  We needed to draw blood cultures, then start his first antibiotic.  Drawing cultures after you've started an antibiotic can skew the cultures.  I  don't know if I've mentioned this, but we have been having increasing difficulty with Gregory's central line.  You can flush (put things in/through his line) but we are unable to draw from his line without using a drug called TPA first.  The theory is that his body is growing a sheath of blood over the exit of his central line, preventing any blood from coming out, but allowing for fluid to pass through.  The TPA kicks loose the sheath.  I've been placing the TPA in his line before he goes to sleep, on the nights before our clinic visits.  This has been working like a dream, but when we are going in for an emergency, we can't wait the extra time for the TPA to work.  When it's placed a the clinic or hospital, it needs to sit in his line for 1-2 hours.  Anyhow.  In the ER we were not able to draw from his line.  TPA had to be ordered, IV therapy had to be requested, the TPA  needed to be placed and we had to wait.  (Prior to this Gregory did receive his Tylenol.  His temp at this point was 103.1)  Since we were on a time crunch and needed to get his antibiotics started, we let it sit for only 30 minutes.  Thankfully he drew and we got our tests and cultures ordered.  Or did we?  His first antibiotic was started.  (The cultures were done wrong and we had to re-draw them, once we got to the Hem/Onc unit, after his first dose of Antibiotics.  I KNEW they were wrong.  Watched it happen.  Failed to have the guts to say anything.  Shame on me.)

We got his CBC back.  He had just had one done 36 hours before.  His platelets and hematocrit had taken a hit.  His white blood count on Monday was 6.8.  Tuesday's white blood count?  1.1.  Yep.  One point one.  This infection hit hard, fast and big. 

All of this took absolutely forever to get accomplished.  We finally hit the unit at 3:00 in the morning, Wednesday.  By the time we did our unit admit, went over meds, gave him a stress dose of Hydrocortisone, started another antibiotic, got settled.  It was 5:00 am.  Meanwhile, Gregory is so sick that he slept through most of it.  Oh yeah, he was puking, too.  Just a reminder, infections cause his GVH to flare.  I finally shut my eyes around 5:30 and was up at 7:30.

Gregory has been having decreasing oxygen saturation.  They measure the amount of oxygen in his blood and for the last several weeks it's been at 92.  It should be 100.  On Monday's visit, Dr J had ordered a high resolution CT to rule out Lung GVH.  My third biggest fear.  The appointment was for Wednesday afternoon.  With everything else going on, Dr J moved up the CT.  They showed up mid morning.  We went down to radiology.  Gregory did absolutely fantastic for the procedure.  He was feeling like total crap, but he cooperated and did say a peep.  As they were getting to the end of the CT, he started to shiver.  During these procedures I  am able to stand with him, comfort him, touch, hold.  We boogied back upstairs and got more Tylenol on board.  I think.  The next couple hours are a little sketchy.  His blood pressure started to decline.  A fluid bolus was administered.  They started a Dopamine drip to help his body bring the pressure back up.  It didn't work.  Upped the dosage.  Nope.  Upped it again.  Still not yet.  Gregory was septic.  He needed more intense care and we were shuttled off to the Pediatric Intensive Care Unit.  As we were rolling out the door, Dr J ordered another fluid bolus.

Once we were settled into the PICU, all of his lines were attached, his blood pressure started to regulate.  I think it was that last fluid bolus.  We spent the night in the PICU, he was weened off the Dopamine and was off by early morning.  He started to chill, again, at 5:00 Thursday morning.  This one was bigger.  I think part of it is because his GVH is flaring.  He is in gut pain.  He spent a few hours Wednesday night moaning with gut pain.  When he started to chill, we got Tylenol in him and he shivered for about 15 minutes.  Curled up, his whole body shaking, moaning in cold and pain.  He had heaved all his PM meds Wednesday night, too.  Infections are hell on GVH.  (See why I'm so protective!)  We had the all clear to leave the PICU late Thursday morning.  By early afternoon we were back in our room in the Hem/Onc unit.  So incredibly tickled to be back. 

Wednesday's White blood count was 10.5.  With those antibiotics on board his body was able to produce and keep some cells.  His marrow is working overtime, though.  His platelets dove to 196 and his hematocrit was 26.  (Monday:  White Blood count 6.8,  Platelets 319, Hematocrit 30.  Normal ranges:  WBC 5.13.5, Plt 250-550, HCT 34-40)

What it all boils down to:  Gregory has a Gram Negative Bacterial blood infection.  Gram Negative Bacteria live in the gut and colon.  Gregory has been experiencing some constipation and has been pooping pebbles.  The theory is that he strained to poop and tore, causing bacteria to enter his blood stream.  There really is no way of knowing where this came from.  This is just a guess.  Needless to say, once he gets past his current diarrhea he will be in a stool softener.  In my best layman's terms:  Gram Negative Bacteria have a "skin".  When antibiotics are given and start to destroy the bacteria, the skin ruptures and releases toxins into the blood stream.  Leading to sepsis.  Before this all happened, I already knew this information.  Gregory had flirted with a PICU visit, under similar circumstances, last August at 60 days post transplant.  It did not come as a surprise to me when we wound up in the PICU.  He responded as expected, with his lack of immune system, in this situation.  I knew that going to the PICU was simply a place where they had more monitoring, one on one nursing care and an intensive care doc right there.  He went exactly where he needed to go.  He responded to treatment and we had a very brief stay.  I really thought we were going to escape from this experience without a PICU experience.  This was our first.  The PICU Experience.  It's another world.

I'd like to write more about The PICU Experience, but it will have to wait.  I promised a certain little man that his new Prince of Persia Lego set would be built.  Thank you Little Wishes!!  I'd also like to snag some z's.

So much love to all of you who caught snippets of the last few days and were right there with us.  One foot in front of the other, day by day. 

Posted via web from MindiTheMagnificent