Not a question, just a comment- Gregory is an amzing little dude, and I'm sending out massive love vibes to you guys.

I certainly agree with Gregory's state of Amazing. He has handled every step of this with grace. Accepting every step as a "normal" part of his life.
Which makes me a little nervous. I hope that having older sibs will help him to recognize that not everyone has a central line, a G Tube and gets Chemo....... I think he's in pretty good shape, though.
Thanks for the love!!! Right back at ya!

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Just a comment -- I asked about the pacifier. I totally realize it's a social norm and I figured this would be the answer but wasn't certain. Definitely wasn't intending to offend!

The question totally did not offend me. At all. Written communications can't express emotions very well. I do not have a knee jerk defensive reaction to stuff.

Please know that I love getting questions and do not get offended. Ever. *fierce squeezes* to you.

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Just out of curiosity, why does Gregory still use a pacifier?

Oh boy. More social norms. (Not offended, just making a point.) Gregory was 3 1/2 at diagnosis. We had gotten him to the point of strictly bed time pacifier use and it was on it's way out the door. Then his life was turned upside down and inside out. He lost control over every aspect of his life and his sense of security was ripped away. Those around him (his family) were in a state of shock, panic and fear. Kids are like animals, too. They pick up the vibe around them. There was NO WAY I could remove something that offered him security and comfort. Endless nights/days spent in strange hospital rooms, doctors offices. If he could have something so simple to bring him peace? I offer it with all the joy in my heart. He'll lose it when he's ready. Of that I am sure. His life is forever altered and full of uncertainty. He can have his comfort where he can find it.

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Are you close to moving back home?

This is the million dollar question. The answer: Who knows. We will get there, when we get there.

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What is the best thing about you? And is it something that has always been a part of you, something that you worked on, or something you have become since becoming a mom?

Whew! That's quite the question. The best thing about ME? Quite simply: The entire package. Wouldn't be me, otherwise. All the good, bad, ugly & beautiful.
We are all "works in progress". I hope there will never be a day when I will say "I'm done cooking. Perfection has been obtained." I have been/am the best me that I can be. There have been some strange phases, periods where I've been stuck and years of amazing growth. I don't have any part of my life that I would want to "do over" or never live through. Except Gregory's Cancer. I do wish that never entered our lives. More for his sake than anything.
I've also come to the opinion that "being a mom" is not what makes us who we are. If we have maternal tendencies, they will surface regardless of the state of our "Motherhood". Being a Mom doesn't make my life any better than someone who isn't. Nurturing life doesn't mean growing babies and raising kids. Life takes on many manifestations.
Motherhood is not the only thing that defines me, either. Every moment of my life has created the "Me" that exists now.
Yes. I kinda like myself. Conceited? Naaaa. Just happy.

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Information overload.

To say that the last week and some change, were busy would be a monumental understatement. 

We left for Seattle a week ago, Sunday, June 6.  We (AKA:  ME) were eager to hit the road and get the show started.  It a little under 300 miles from Spokane to Seattle and takes about six hours, driving a comfortable speed with a few stops along the way.  We made a stop at the Thorpe fruit stand, just outside of Ellensburg and picked up some delicious fresh Bing Cherries.  Before Ellensburg you cross the Columbia River and head up the hill.  Not far up the hill you can start to see Wind to Energy Windmills.  They are breathtaking to see.  Miles and miles of hope.  At first you can see just a few.  You round a corner and see a few more.  Round a few more corners and they just appear.  The sight of them made my heart swell.  Swell with a hope and promise for our Green Planet.  It may not be the end-all-be-all solution, but it's a start.

Monday was the beginning of our outrageous week.  It was a whirlwind of appointments, sedations, procedures, tests, meetings.  Every opportunity that we had, we slept.  Aside from what we already had scheduled, we also added an ECHO of his heart and a CT with sedation. The CT was added to his GI scope.  Which was originally only scheduled for an upper scope, but the lower was added.  We canceled the appointment with the GI doc at Seattle Children's.  We really did not need it.  Seattle Cancer Care Alliance coordinates his care based on the results. 

Monday we met with Pharmacy, Nutrition, Research Study (x2), his Long Term Follow up nurse, Joan Suver, PA and Dr Woolfrey.  It was several hours of recounting everything that has happened, since October.  Trying to remember the highlights and the subtle events that shape the picture of Gregory's health status.  It was exhausting. 

Tuesday he had his first sedation for the week.  After meeting with the Anesthesiologist we decided to give Pentothol another try.  It's also known as "truth serum".  We went Old Skool.  He was sedated for his Bone Marrow Aspirate and skin biopsy.  The skin biopsy was to check for skin GVH.  He had acute skin GVH, right after transplant.  They just wanted to check to make sure it was still gone.  The procedure went off without a hitch.  Sedation was flawless.  At Seattle Children's they do the procedure in a small procedure room, connected to an empty room, separated by sliding frosted glass doors.  I am allowed to be with Gregory while they sedate him, I slip next door, the doors are closed and they do what they need to do.  When the procedure is done, they open the sliding doors and roll him in with me.  Gregory was still out when they rolled him in.  I was able to climb up onto the bed and be with him.  He came out of it beautifully.  Perfection.  Flawless.  Within 30 minutes he was back on his tricycle.  Amazing.  We then went downstairs and he had his Bone Age X-Ray.

Wednesday he had his DEXA scan to check bone density and his visit with Oral Medicine.  The DEXA scan was a piece of cake.  All he had to do was lie on a table and was scanned.  Oral Medicine just looked at the state of his mouth.  No x-rays.  Then we headed to Seattle Children's for his ECHO.  It took quite a while for the ECHO.  The tech was new/training.  Gregory rallied through it, though.

Thursday was his second sedation.  Along with his GI scope we had added a CT with sedation.  They could not use the Pentothol, since he needed to be sedated for longer.  They just used regular old gas.  Thankfully it was the GI team that handled his sedation and recovery.  He did not have to go to PACU.  Which is like a post sedation recovery area.  He had a bad experience there once, with a nurse who should not have come to work that day.  There is something about those folks who are on the GI team at Seattle Children's.  It's not the first time Gregory has been seen there and they are all amazing.  Super friendly, understanding and cooperative.  I stressed Gregory's needed to have me there as he wakes up.  They were great about getting me on time.  It took him a little longer to wake up, but he eventually came out of it beautifully, again.  No tricycle this time, but a ride to the car in a wheelchair.  We went back to the hotel for a few hours and returned to Seattle Children's for his eye exam.  I kind of dreaded the eye exam.  He did not handle it very well this past fall.  This time he was perfect.  Participated and cooperated every step of the way.  Even with the eye drops for dilation.  It's somewhat heartbreaking to see his level of comfort with all of this.  He now takes it all in stride, even anticipating each step of his appointments.  Assisting the techs/nurses.  Telling them how to do their jobs. 

Gregory's tricycle went with us, everywhere.  Based on the reaction we received, you would have thought they had never seen a kid on a tricycle.  This tricycle has been one of the greatest assets for us.  It gives Gregory more mobility and independence and saves my back from carrying him everywhere.  He just cannot walk for great distances, yet.  His hips and knees get weak, fast.  (That is unless he's chasing his siblings!)  There must be something about walking vs running.  *shrug*  Gregory managed to charm the pants off everyone that he came across.  We visited the unit and were able to see Dr Manley.  Dr Manley is no longer on BMT duty.  He was attending for Gregory's actual transplant.  It was important for us to see him.  He now does Hem/Onc.  We also got to see Natalie, one of our favorite PA's and Trish, another PA.  Several of the nurses, too.  Time ran out really fast and we did not get a chance to hit the unit during the night shift.  We did get to see one of our favorite nurses.   Jill.  I love this woman.  We also got to see a favorite night nurse, Susanne, who now works at the SCCA BMT clinic.  

The Ronald McDonald house was full so we stayed at a hotel at Northgate.  Our stay was booked through Friday.  We packed it in that morning and headed to SCCA for our 2:45 conference to discuss the results of the weeks testing.

*Gregory is still 100% donor and has No Evidence of Disease. 

*His skin biopsy showed no evidence of skin GVH.

*He has lost bone density, but not enough to treat.  He'll be tested again, next year.  With continued Steroid use, this could worsen.

*His Bone Age is 3 years, 3 months.  Gregory will be five on the 24th.  The only thing I know about this is that bone age less than his real age is really good.  It means he has plenty of room for growth.

*His ECHO showed that his heart is healthy, strong.  No change since pre-transplant.

*His mouth:  he does have inflamed gums.  We need to brush more often.  (We have x-rays Tuesday morning to look at development.)

*His GI scope and biopsies:  The biopsies did show GVH of the gut and colon.  No surprise.  They did not change his steroid dose, but did restart his taper schedule.  Which means several more months of steroids.  At least nine more months.  There is irritation around his G-Tube site (in his belly).  They have recommended that we change out the type of G-Tube.  He now has a Microvasive and suggested that we change to a Mic Key.  They are thinking that the material that the tube is made of is causing the irritation.  His G-Tube was something I was going to have his surgeon take a look at, anyhow, during the placement of his port on July 1.  Good timing.

*Eye Exam:  His eye exam revealed small cataracts.  They will be monitored every six months.  He also needs glasses for near sightedness and astigmatism. 

His calorie/fluid goals have been changed.  He's been holding pretty steady at 17.2 kg.  We are now at about 1300 calories a day and 1200 ml of fluids.  His eating has decreased the last few weeks.  It's been really busy and stress flares his GVH.  It's no surprise.  We have added back in night time feeds.  He really needs the nutrition for brain development and his weight is low enough to not be too concerned about weight gain.  We did double his calcium.  He is now on 1500mg of calcium a day.  His bones really need it.

His immunology looks as expected.  He doesn't have any virus'.  He is ready to begin his immunizations.  (He needs to be re-immunized.)

His eating restrictions have been lifted!  He can now have soft serve ice cream, Subyway sandwiches, fountain drinks, hard salami.  Just to name a few of his favorites that he's been missing out on for the last year.

He can start school in the fall.  With the understanding that he may have lots of sick days.  We will take it day by day.

*His chest CT revealed no infections and no signs of GVH.  Which doesn't answer any questions.  When we hit clinic on Monday his oxygen saturation was at 89% via a finger probe.  They sent us downstairs to the pulmonary area and they place a probe on his forehead, between his eyebrows.  I guess it's a good area for blood circulation and that's what you need for readings.  He was at 93% with that probe.  We do not know why he is not at 100%.  They have recommended that he see a Pulmonologist.  (To be scheduled.)

*His growth is delayed.  They did not test his growth hormones.  We will cross that bridge, later. 

I'm sure there are things that I'm missing.  I'm doing this all from memory.  The final reports were not back by Friday, nor was anything dictated.  They will be sending a packet with everything to our doc and to us.  If there is anything I've left out, I'll share it.

He is still immune suppressed.  He is still at risk of infection, but we do not know how long he will be this way.  We still need to be careful and vigilant, but Gregory can begin to experience life outside of his bubble.  Slowly.  It's not just infections/colds we need to worry about.  Until he is fully immunized, we also have THAT.  His immunization schedule will come with the rest of his information.  We will have to monitor his bodies reaction to the immunizations.  Make sure that his body is doing what it should with the shots and creating antibodies.  There is a chance that they won't "take".  So, we monitor it.  Every cold/infection that he gets will be like the first time, too.  We don't know how his body will react.  It will also flare his GVH.  We can't keep him in a bubble forever, but we can do our best to slowly introduce his immune system to stuff and see how he does. 

This past week has taken me from "crisis" mode.  AKA:  My child could die tomorrow.  To having a child with Chronic Medical Needs.  There is much weight placed on the first year, post transplant, for JMML.  I'm not saying we are out of the woods.  Not only is there the shadow of JMML, but the reality of treatment related side effects.  Including secondary cancers.  All three of Gregory's chemos, Busulfan, Cytoxan and Malphalan, independently, can lead to a secondary blood cancer called MDS.  He received heavy doses of all three.  We still have treatment related issues.  With some very possible big ones, on the horizon.  For now, though, I have the tiniest amount of hope in this ravaged heart of mine.  Just a glimmer.  I don't know how much of that is credited to my Zoloft, though.  I could care less, though.  I'll take this moment.  It could change tomorrow. 

I'm sure I've left many of you with questions.  Please feel free to go to my Formspring and ask anything you might want.

Posted via web from MindiTheMagnificent

In Case You Hadn't Heard..........

Gregory is:  100% Donor & No Evidence of Disease (NED)!  Woo Hoo!!!  Still going strong. 

More later.

 

Posted via web from MindiTheMagnificent

Have you gotten angry? If so, what did you do to deal with it?

Anger. Hrmmmm. To me, anger is directed at something. Early on I was able to wrap my head around the fact that I cannot DO anything to change Gregory's diagnosis and course of treatment. I reserve anger for things that can change or have control over. I've never asked the elusive "WHY?" question, either.

There have been plenty of other emotions, though. Lots and lots of fear, frustration, heart wrenching sadness, anxiety, stress, worry......... I let myself go to these places. I let myself feel everything that comes along for the ride. I've spent many evenings "Dancing with the Devil in the pale moon light.". I don't have a time machine or the possibility of changing Gregory's genetics. We take it moment to moment, one foot in front of the other.

With love, community, joy and music.

Ask me anything

love, joy, community and music.....especially some Cat Stevens!!! Ever have a hankerin' for some Cat???

I was raised on Cat Stevens! I have several tracks on my The Best of The Best playlist.

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Counting down....

We had clinic on Tuesday the first.  Labs look great and Gregory has been feeling great. 

We are getting ready to leave this weekend.  Dad is home, recovering from triple bypass.  I  knew he wouldn't be able to get out to the Water Retreat before we left so Gregory and I stopped by Mom & Dad's.  It's the first time Gregory has been to their house since diagnosis, February 2009.  We hit the house about noon and I figured we would stay for a few hours and head out.  Gregory was having such a great time, we stayed a little longer than expected.  The weather was beautiful.  Gregory was all over the place, getting into everything.  Walking down memory lane with all of his old toys.  Jumping from one thing to the next.  Next thing I  knew, it was time to get the sibs.  They spend Tuesday evenings with Mom.  We all piled into Mom's car and headed to school.  I got to show up at school to get them, they were quite surprised.  We picked up Little Caesar's on the way back.  The kids chowed down on pizza and then played for a few hours.  Everyone had a really great time.  We headed out about 6:30.  Gregory crashed in the car before we were even six blocks away.

I should have known better.  Another lesson reinforced.

He had a very quiet day on Wednesday, he hardly moved from the sofa sleeper.  Quiet.  Occasional belly twinges throughout the day.  By evening he had a headache, more belly aches and started heaving.  Yesterday was just too much.  He played hard!  I really hope this doesn't last beyond now.  I hope he wakes up in the morning, refreshed and ready to roll.  Crap.  Should have known better.  It needed to be a much shorter visit.  He has been feeling so great lately, that I let my guard down. 

We received a phone call from clinic, today.  His sirolimus level was low.  2.0 in fact.  Which is really strange, considering that we raised his dose last week.  I'm hoping it's a fluke and not malabsorption.  We go in first thing Thursday for a repeat blood draw to double check his level.  We also reduced his prednisone.  He has lost a few pounds, he is currently holding at 17.6kg.  We are decreasing from 20mg to 17mb.  A milligram a kilogram.  Let's hope it's a subtle difference and he doesn't experience any GVH symptoms.  

I've been walking down memory lane.  Tuesday marked the beginning of his transplant experience.  Gregory was admitted June 1, 2009 for conditioning with transplant on June 11, 2009.  We will be observing his Transplaniversary while we are in Seattle.  We also get to submit our info for his donor to have and hopefully she will want to exchange information and provide us with hers.  I'd like to let her know, as best I can, how much her selfless gift has meant to us.

I finally was able to get our schedule for next week.  It's not as crazy as I expected it to be.

Monday:
10:00  Registration
10:15  Blood Draw
11:00 Pharmacy
11:30  Nutritionist
12:45  Study Coordinator
1:15  Meet with the RN
2:00 Meet with Joan Suver, PA

Tuesday:
9:30  Bone Marrow Aspirate with Sedation
1:00  X-Ray and Something else regarding his bones

Wednesday:
12:00  DEXA Scan to check bone density
1:00 Oral Med (AKA Dentist Plus)

Thursday:
7:00 Check-in for Upper GI scope with sedation
2:30  GI Doc
3:00  Opthalmolgy

Friday:
2:00  Vaccines
2:45  Conference with Dr Woolfrey

I find it funny that they scheduled the beginning of his vaccinations.  He is no where close to being ready to be re-immunized.  He is still needing IV IgG about every 4-5 weeks.  It's part of your immune system and he needs to making enough of his own before immunizations.  Otherwise his body won't be able to do anything with the vaccines.  I called today and discussed a few things with the nurse.  Got a few questions answered and had a chance to chat about Gregory's specific sedation needs.  He is really sensitive to sedation and we have two for this week.  He can't have Versed or Propofol  (Milk of Amnesia).  Last time we used Ketamine and Fentanyl.  They worked well, but he was high for quite a while and was tripping.  I will be certain that anything he watches before these two sedations will be quiet and calming. 

Yes, I am a walking reference manual of medications and tests.  They don't have an ECHO or EKG scheduled.  That was part of his pre-transplant and before leaving Seattle testing.  I  also found out that they will not be looking at his growth hormones.  We will discuss it more, when we get there.  I guess it makes sense to not mess with it, until he is showing obvious signs of lack of growth.  It involves two days of testing.  He is given drugs and they draw blood samples and timed intervals to determine his bodies reaction.  I'm glad that Wednesday and Friday are quiet days.  He will need to time to chill after his procedures.  (Note to self:  Make sure they stress dose his hydrocortisone for these procedures!) 

I'm also counting down the days to the placement of his port.  I cannot wait for him to have a real bath.  July 1!

Alright, this is mainly info for posterity.  I  don't have anything witty or intriguing.  Just a lot of list making, checking and double checking.  Making sure that we will have everything we need and get everything done that needs to be done.  My mind will quiet as soon as the rubber hits the road.  Very, very, very excited to get to Seattle.

Posted via web from MindiTheMagnificent