formspring.me

Wanna know something? Ask away! http://formspring.me/MagnificentMndi #childhoodcancer #momcologist #blamecancer

formspring.me

Wanna know something? Ask away! http://formspring.me/MagnificentMndi #childhoodcancer #momcologist #blamecancer

Hah! Back so soon?

First things first......  Today we celebrate our First Born.  Twelve years ago, today, Curtis came bounding into our lives.  Forever changing who I am.  He is my oldest, my first born, my dream come true.  Happy Birthday, kid.  I love you more than you could ever imagine.

Getting pictures of this kid, these days, is nearly impossible.  This is the best that I can find!  Turkey hates the camera.

Secondly......  I am angry.  So mad and pissed off.  Gregory had his six month eye exam today.  We are monitoring his cataracts every six months.  The records have not been received from Seattle Children's, yet, so the doc couldn't compare the progression.  The records are in process and should be received, soon.  The part that I'm angry about, came as a uncomfortable surprise.  Gregory's correction has changed slightly and his astigmatism has worsened dramatically.  I was not prepared to hear this news.  It was not expected.  He needs new lenses for his glasses.  This change could be his normal progression of vision, but the doc thinks it's most likely due to his cataracts.  Cataracts change the shape of the eye, hence the change in vision.  I don't know enough about cataracts to have anticipated this change.  As much as an information gatherer I am, I can't learn it all or be ready for it.  I guess this is the root of it.  While this is a minor thing, in the big picture, it's just another aspect of Gregory's treatment and something else I need to be vigilant about.  I mean come on!  Who goes to the eye doctor every six months!  Then.... if you do, who has to have their lenses changed every six months!!!!!  At the age of 5!  Just another thing heaped onto Gregory's health and life.  A small thing...... I  know, but..... another thing.
I'm also quite tired of being a minority.  Whenever Gregory is seen, outside of Seattle Children's and Seattle Cancer  Care Alliance, his medical history is alarming to people.  People in the medical field.  Granted, Childhood Cancer is not seen too often and Pediatric Bone Marrow Transplants, even less.  I'm just asking that the medical professionals quite reacting with shock and disbelief while discussing his history and current status.  Today's example was the tech who did his initial eye evaluation.  When discussing his cataracts, after I had told her he was a BMT patient, she assumed his cataracts were congenital (from birth), when I told her no, they were treatment and steroid induced, she did that little, widening of the eye balls, slight jaw drop and a jerk back of the head.  It was a noticeable reaction.  This is not the first, nor the last, just the most recent.  I realize Gregory is in a unique situation.  I work daily at making some sort of peace with his health.  These kinds of reactions are a reminder that he is far from normal.  It's a natural reaction, but I would like to see a little more professionalism.  If you have questions, please do not hesitate to ask.  I am an open book when it comes to frrank and honest communication.  It's the only way to learn.  I know this is a traumatic thing to think about, I know I've had nearly two years to be "comfortable" with this, I know that YOU are just now learning about Gregory and maybe this is even your first exposure to Childhood Cancer and Bone Marrow Transplant.  Still, we are more than the diagnosis and treatment.  We are more than the symptoms and late effects.  We have feelings, eyes, ears and memories.  Can you tell this hit a soft spot for me , today?

Today I also was given information regarding the state of Arizona.  Their legislature just recently ended Medicaid coverage of Bone Marrow, liver, kidney and some heart transplants.  Condemning people to death, based on false information.  The story can be found here.  Please take the time to watch the video.  In the meantime I will be researching what kind of action can be taken to help the state of Arizona's residents.   Regardless of your political views, this is devastating news.  Please don't respond with finger pointing.  There will always be finger pointing, someone blaming someone else and vice versa.   This gets us nowhere.  The best course of action is to get informed, share the information and act.  Don't quite know what the action part will be, but I will find it.

Thinking about all of you, out there.  Holding you close, surrounding you in love.  'til later.  Gotta jet!

Posted via email from MindiTheMagnificent

What is the best way to tell family we don't want to exchange gifts, but to use money to donate to charity in their names for the holidays instead? We have had people respond negatively to this in the past if it wasn't accompanied by a "gift".

Boy. That is a hard one. Gift giving and gift receiving. Many gift givers are so incredibly vested in the act of picking out something special, for that someone special. The whole process. Finding "the right" gift. Imagining the receivers response. Carefully wrapping the gift. Presenting the gift. Watching the reaction and receiving the thanks. The tradition of holiday gift giving.

Forgetting that it's not about the giver. It's about the receiver and the intent in the gift giving.

This is a deeply ingrained thought process. I don't know how to help you, help them, "get it". They have to get it on their own time, on their own terms. Yet, please know that YOU are helping them to get it.

Remember: Love. Respect. Time.

Just one spin around this little planet is not nearly enough to learn all that there is. We are all on a different path of learning.

Ask me anything

Taking My Own Advice ~ Purging

I have a few hours to myself today.  Decided to try and purge this head of mine.  Spreading the burden, if you will.

First things first:  Gregory is doing quite well.  We've had 3 or 4 ER visits with no admits.  About 10 days ago, he did come down with a wet cough and spiked a fever.  Come to find out he has Parainfluenza Type II.  AKA:  Croup.  He spiked a couple fevers, cough progressed, a smattering of nose juice.  A five day course of Zithromax.  A drop in appetite.  To date he's lost one kilo.  2.2 pounds.  Which is 6% of his body weight.  His appetite took a huge hit, supplemental night time feeds are back for a few days.  He's not been in school.  I'd like him to be a little stronger before we expose him to catching something else, on top of this.  He's improving, slowly.  It's a very long process for his little body.

He's been enjoying school and all that comes with being around "normal" kids.  I absolutely adore the school.  Too bad I'M not pre-school age!   December is his 18 month post transplantiversary.  Which means his "every six months" appointments are now.  Next week he has an eye exam to take a look at the progression of his cataracts.  He also has a High Resolution CT of his lungs to look for signs of Lung GVH.  His oxygen saturation is still low.  We were able to get him in to see an endocrinologist, last week.  We talked about Growth Hormone and what Gregory's needs might be.  As it stands now, it's too hard to tell the urgency.  Not only will his transplant treatment effect his growth, but his sustained use of steroids stalls his growth.  He is currently 14k, about 30 pounds, and is on 9mg of prednisone, every other day.  Which computes out to five times his physiological dose.  Crazy to think that not too long ago, he was on 30mg every day.  We talked about his bone age.  At Gregory's one year follow up a bone age x-ray was taken and Gregory's bone age was 3yrs 3months, just shy of his fifth birthday.  What this means is that he literally has "room to grow".  Often the bones can age beyond the chronological age, which means there is less time/room for growth.  Which gives us some wiggle room in terms of Growth Hormone Treatment timelines.  I'm still on the fence about using them.  Only time will reveal what my feelings will be.  Daddy's not too terribly tall at 5'4", so Gregory's lack of height?  *shrug*  We have plans to evaluate again in July, post Gregory's annual follow up in Seattle.  As a side note:  I absolutely LOVE his endocrinologist.  Dr K.  Also discovered that he has a child/children at Gregory's school, in the morning program.  Cool, huh?  One of Gregory's oncologists and his endocrinologist with kids at his school.  Yes, Spokane is THAT small.  

We have had two small victories.  Not long ago, Gregory graduated to every three week appointments.  THEN, he graduated to every FOUR week appointments.  Pretty big deal, except with cold/flu season I know we will be there in between visits.  Which has already proven true.  There has been a snafu in his re-immunizations and his IgG.  When we received his new immunization schedule they were in the process of changing the schedule.  Also, there was a note about his NOT receiving IgG unless his level was below 400 AND he was showing signs of infection.  He has continued to receive IgG when is level is below 400, regardless of his state of infection.  Which has been about ever 6-8 weeks.  On top of that, he is not to receive IgG for two months, prior to receiving immunizations.  (IgG is part of your immune system.  It's been referred to as The Immune System Highway.  Helps to get those cells where they need to be.  Gregory is FAR from normal range.)  His local Oncologist feels he needs to be kept above 400 regardless of his state of infection.  Which I'm totally GREAT with.  It's his immunizations that I'm concerned about.  Since he has been receiving IgG through his immunizations, there is a chance that they are null and void and we will need to start over again.  Ugh!  Anxiously awaiting a call from Seattle, either way.  He is due for his third round of shots in December.  It's complicated.  

I've mentioned this numerous times over the past several weeks.  Childhood cancer is the "gift" that keeps on giving.  The ramifications of this experience do not show their heads all at once.  Bits and pieces continue to show up, daily.  Currently it's hitting the sibs, something fierce.  AnnMarie is feeling all kinds of insecure.  She is having nightmares about Gregory and I moving away forever and not telling her where we are going.  she wakes up hysterical and sobbing.  She is no longer able to sleep over at a friend's house.  She falls apart if Gregory and I  need to head to the ER.  Added to her insecurity is Curtis and his anger.  The kid is so angry.  AnnMarie is his target.  So am I.  We started counseling, but it's a slow process.  

We had school conferences for The Big Ones and I learned so much about Curtis.  Day to day, his schooling is a roller coaster.  Yet academically he is flourishing.  If he continues as he has, he will qualify for Honors Classes next year in middle school.  Not that I think he's not smart enough, I know he is brilliant.  I'm just amazed that he is able to turn it into something that is measurable by school district guidelines.  Not too sure hoe I feel about placing him in honors classes.  He needs the challenge of honors classes, yet I  don't want to set him up for less than a successful first year in middle school.  He will have enough challenges, just adjusting to a new routine, without the pressures of advanced courses.  Yet, if he is board stiff with standard classes, we could be in trouble.  We have time to think this over and figure it out.  
AnnMarie is doing really well, too.  She is cut from an entirely different cloth.  That child is all about service.  She gives from the very depths of her heart and doesn't ask for anything in return.  She will be helping out in the Developmentally Impaired classrooms, assisting the kids in their reading.  While this is great for her, I worry that she will be giving too much of herself and not keeping enough to sustain her spirit.  I did discuss this with her teacher and we will be keeping an eye on her needs.

Myself.  There's not much that I want to share to publicly.  I am surviving.  I'm tired of it, though.  I barely have a finger grasp on each day.  Keeping up with everything and trying to remember to give The OffSpring what they need.  I  had a conversation with the school counselor and she stated that I needed to show my love for Curtis and AnnMarie, five times, what I normally would.  They need to feel loved.  My immediate thought was..... I can barely provide 100%, how do I find 500%.  I am taking baby steps.  Itty bitty, teeny tiny baby steps.  If I could get into the habit of writing, more frequently, it would help.  Yet these are struggles that are entirely different than Gregory's state of health.  These are emotions, reactions and experiences that are results of the trauma our family has been through.  They are perceptions from MY eyes and my heart.  I am the only one inside my brain, listening to my heart.  No matter what I share with friends, talk with the counselor about or put down in these words, it's not the whole story.  It's only bits and pieces that are crowding out, at that particular time.  
The financial part is probably the hardest.  We are no longer a family of two incomes.  While I can't and won't go back to work, another income is desperately  needed.  Add the holiday season and a couple of OffSpring birthdays and we are toast.  Struggling. 
The things that were broken before diagnosis are still there, too.  Waiting.  Long neglected and needing to be addressed.  While many things really don't matter, there are basics that need attention and I  just don't know how to address them and fix them.  Or I do and I'm just too stinkin' scared to bring them out, into the light.  
Instead I fling myself into things that I  have control over.  Invest myself in the lives of other families.  Trying to be available to help others.  I will always be a part of this Childhood Cancer community.  I just want to find a balance.  Yet, I don't think there is an easy balance.  There are some families that just grab you by the heart strings and reel you in.  Over the last several weeks, we have had several deaths.  Children and their families that are very near and dear to me.  Cameron, a JMML kiddo.  Ryan, a post transplant spirit, who's Mama is a soul sister.  Max.  The Mighty Max.  Who's Momma is a 46 Momma.  Anniversaries of kiddo's death.  Relapses, evidence of disease, illnesses.  Small victories and older kiddos making their own impact in this world.  I am vested.  These are my family members, my peeps.  I cannot walk away.  I cannot NOT be a presence.  I need to work on my own home, though.  Diligently, with love.  Trying to.  Every day.  

Meanwhile, the work with 2011 46 Mommas continues.  The 2010 Mommas are still fundraising.  Through the end of 2010.  If any of you out there are in a charitable place, please remember these Mommas.  Your holiday gift giving dollars are precious and can make an impact on funding a cure for Childhood Cancer and better treatments.  Donations can be made here.  Just click on the 'Donate Now" button.
Awareness=>Funding=>Research=>Cures

That's it, for now.  Not all of it, but a good start.  'til later.  Gotta jet.
Mindi
~Momcologist

Amazing that this is the same kid.  THIS is Prednisone.

Posted via email from MindiTheMagnificent

Awareness=>Funding=>Research=>Cures

Good gravy this is overdue. 

My writing head is still stuck in August, while my life whizzes into October.  We spent quite a bit of October at HomeHome.  We officially moved HomeHome in late August.  I was suffering Shell Shock, PTSD, emotional release........  For the 18 months prior, beginning with Gregory's diagnosis, I had stuffed all my "stuff" in a corner.  It was crammed in crevices and undercover.  Kept hidden from the light of day, so I could survive each passing moment, whilst in the thick of it. 

We returned HomeHome to a house not even halfway complete in it's renovation.  I share the following not because I want sympathy or pity.  Simply to get it down, out of my brain and tucked away for posterity.  Like I've mentioned before, I had this crazy vision that Gregory and I would return HomeHome to a freshly renovated home.  Ready to ease back into family life.  HA!  For much of August I struggled with being OK with what our living circumstances now are.  Along with the crashing waves of processing what Gregory and I have been through since February of 2009.  We have a rather small and poorly laid out nearly three bedroom home.  We felt it necessary for all three kids to have their own room.  Curtis is 11.  Obviously needs his own space for a place to regroup and cool off.  Asperger's can really be a headache.  AnnMarie is 8.  Gregory is 5.  Just a strange combination of needs for all three.  We also wanted them each to have their own room for quarantine purposes.  If one of them should come down with something contagious, we needed to be able to keep Gregory away from it as much as possible.  So.  Gregory's room (which was my and Larry's room) is finished.  Fresh paint and new flooring.  The rest of the house is 1/2 painted and the flooring needs to be laid.  Daddy is sleeping in the living room on a mat and I am sleeping on Gregory's floor.  Strange.  I  know.  For a large portion of August i was ANGRY!  Mad, mad, mad.  

Desperately trying to get my head around our reality.  In the time that has passed we have found our way.  I tell you though, I DO  NOT want to repeat that month.  August is also the time of year where we start gearing up for Childhood Cancer Awareness Month in September.  The 46 Mommas were getting ready to shave.  We were all trying to figure out how to live together under the same roof.  I was re-establishing myself in the community.  Running into people, while out and about and trying to navigate the questions and responses.  Trying to find a dialogue that respected where we are at and what the other person REALLY  wanted to hear.  The look in someone's eyes that is desperately pleading with you....."but, he's OK.  Right?".  It's such a loaded question.  Rather than go into all the details I answer with a "Yes, his cancer is gone.  He is still on a dozen different medications and immune compromised. He also has a laundry list of treatment related side effects.  For now, though, he's doing well."  

I wrote the above about ten days ago.  I've been trying to decide whether or not to share it.  Wondering who's feeling I could possibly hurt and what was my intent for sharing our living arrangements.  *shrug*  I don't have an answer, but I do feel the need to be honest about this experience and document it for posterity.  So.  There it is. 

In the last two weeks, Gregory has navigated a head cold and received immunizations.  Since he has a new immune system, he has to be re-immunized.  We started the process in August and he had his boosters, along with a flu shot, this week.  His head cold that he had was very kind to him.  He did pop a fever and we made the necessary trip to the ER.  Labs, cultures, nasal swabs, x-ray, urine sample.  He looked relatively good, his labs were good and his x-ray was clear.  WE WERE NOT ADMITTED TO THE UNIT!  For the first time since diagnosis.  Can you believe it?  He managed to get through the head cold with minimal symptoms.  It was a light cold, Curtis, AnnMarie and I all had it, too, and it was about a 3 day course.  *whew*  When he received his immunizations this past Monday?  That was another story.  He had four pokes, two in each leg.  He had tremendous leg pain and would not even bare weight on his legs.  This lasted until Wednesday afternoon.  Monday night he popped a fever and it was back to the ER.  He received IV fluids, a stress dose of Hydrocortisone and an antibiotic.  Labs, cultures, urine sample.  Once again (woo hoo!) we were NOT admitted to the unit.  All of his tests are remaining negative.  We are finding our way and taking it one step at a time.  He is still immune compromised and has a fragile system.  Over all, he is doing really well.  Keeping my fingers crossed for cold and flu season.  One thing I need to remember to do.....  keep up with the dishes and the laundry.  These last two ER visits were a glaring reminder that although I could leave a sink full of dishes and a pile of laundry, I do not like leaving that to Larry.  My problem, I know.  I also need to keep a bag packed.  Crap.  I really hate seeing that packed bag in the corner.  Hate it.  Just another reminder that we are still on a long haul.

Many of you have already heard, in case you hadn't.......  I am officially a 46 Momma for our 2011 Campaign.  I will stand with 45 Momcologist's, in a national venue and shave my head.  While raising awareness for Childhood Cancer and raising funds for desperately needed Childhood Cancer Research.  This time, next year, I will be LOUD, PROUD and BALD!  We are hard at work welcoming the new team and coordinating The Shave for 2011.  This is a St Baldrick's event.  If you are a mom of a cancer kiddo and want to join us, click here and fill out the recruitment form.  If you are a momcologist and unable to travel, a non-momcologist who wants to shave, or you think you might be able to lend us a hand, drop a line to info@46mommas.com.   We are helping to set up local/regional shave events for anyone who want to help the 46 Mommas reach our $1 Million goal.  This is going to be an amazing experience.  Can't tell you how honored I am to be a part of this.

I've been reading like crazy, learning, advocating, trying to find my voice.  I've found some great articles:

People Against Childhood Cancer (PAC2) is a group of folks committed to educating, raising awareness and funding childhood cancer research.  Here is a fantastic report on the Childhood Cancer Caucus held this past September.  It's long, but it is soooooo good.  My take home quote: 

"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved" ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, M. D. Anderson Cancer Center

The CBS Sunday Morning Show recently did a piece about Bone Marrow/Cord Blood donation.  The kiddo that they featured is a JMML patient.  Check this out.

Alliance For Childhood Cancer

Yes, advocacy and awareness courses through my veins.  Always has.  You may ask: Why?  Those before you haven't gotten very far. 
I beg to differ with that opinion.  I am not out to obtain a splashy, big change.  Slow and steady wins the race.  Someone, somewhere, whether it's a fresh faced Pediatric Oncology Research, a child in elementary school with an interest in science or a researcher who has been at it for decades.....  knows something and doesn't know it.  How can that idea grow, flourish and come to light if we aren't ready to lend the hand that can make that happen.  By partnering with PAC2, St Baldrick's, working together with Alex's Lemonade Stand, The American Childhood Cancer Organization, CureSearch, local hospitals and research centers......  we WILL slowly and steadily win the race.

Now back to our regularly scheduled program.  We are all adjusting to living together.  Stumbling, anxious, laughing and loving along the way.  With some yelling, screaming, tantrums and frustrations thrown in for flair.  I think we found a school for Gregory.  It's called The Plum Tree and is absolutely divine.  He will be attending two afternoons a week and it is a perfect fit for him.  Excited to watch him grow and explore the world.  Still trying to learn how to live with the fact that we have a child with a chronic health condition.  Especially since it's not glaringly obvious.  

More later.  I'm hopeful that my writer's block has been relieved and I can get back down to writing regularly.  I've really missed it and missed out on many things that I would have liked to share.  

Sending love and light to everyone of you.  Holding you in my heart, cradled in comfort.

~Mindi
Momcologist 

Posted via email from MindiTheMagnificent

I am a Momcologist.

Tonight I was honored to speak at our Candlelighter's of the Inland Northwest's, Childhood Cancer Vigil.  Below is what I shared.  This was written as a speech, so it has a different rhythm.  Inflection and body language won't be present.  I hope you can still feel what I've written.  It's a message to every last one of you.

Welcome.  Here's the facts.....  My husband Larry and I have three kids.  Curtis who is 11 and AnnMarie who is 8.  Gregory is our Cancer Kid.  He's five years old.  Gregory was diagnosed with Juvenile Myeolomonocytic Leukemia in February of 2009.  There are only about 25-50 cases of JMML diagnosed every year in the US.  Gregory's leukemia cannot be put into remission with standard Chemo.  Our only treatment option was a Bone Marrow, or Stem Cell Transplant.  He received daily low dose, oral chemo, to keep his disease under control, while we waited for a Donor Match.  We left for our five month stay in Seattle in May of 2009.  Gregory received his gracious gift of new cells on Thursday, June 11, 2009 at 4:10 in the morning.  His donor was a 23 year old female, here in the US.  We have yet to get connected with his donor, but are hopeful that we will.  His day 26 post bone marrow transplant, Bone Marrow Aspirate showed that there was no evidence of disease and his marrow was 100% donor cells.  This status has remained unchanged.  He is currently in ongoing treatment for Graft Versus Host, which is an effect of having someone else's immune system.  He remains immune compromised.  This process may continue for several years to come as his new marrow learns to recognize his body and not try to destroy it. 

Over the last several weeks I've been trying to discover what I wanted to share.  Thinking about you, the audience, and what the intention was of tonight's vigil.  Divine inspiration never presented itself, but this is what I came up with.

I stand here, preaching to the crowd.  The parent's, sibling's, grandparent's, caregiver's, and loved ones of our cancer kids.  Hopefully there are a few of you out there that came along in solidarity to this group.  This odyssey that we are on never ends.  It is a life long experience that comes with fear, joy, expectation,  hope, loss, life, death, post traumatic stress syndrome, nightmares, exhaustion......... It is a life changing experience.  Some good, some horribly wretched.  We rally together, reading, writing, texting, facebooking our hearts out in an effort to find community and comfort.  That is why I am here, today.  Offering my heart.  To each one of us who are on this path.  We ache for things to be as they were before this beast entered our lives.  While being eternally grateful for those that are with us.  Holding our hands and our hearts, witnessing, as our new lives are crumbling, unfolding and being reborn. 

I have an extreme distaste in my mouth when people use these three words:  Lesson, Gift, Reason.  Every person is on an upward path of growth.  That growth is possible without this experience.  There is no Lesson, Gift or Reason, worthy enough of what our families and children are put through.  We are put on a fast track of growth.  Racing along to keep up the lightning speed in which things happen.  Gasping for air as circumstances change in the blink of an eye.  The depth of our knowledge of our child's disease would keep any Oncologist on their toes.  From the moment the words are spoken, "Your child has cancer." we learn what perspective really is.  We have gained a new appreciation of the mundane and rudimentary things in our lives.  Moments we never gave a second thought to, are now sacred and crystalline in their value.  Some of our friends fade away. People we never truly considered friends, become steady rocks in our lives.  Our fellow Childhood Cancer families sometimes mean more to us than our blood relatives. 

I would gladly revoke my membership to this club, if I could.  Yet, I am constantly humbled and filled with love for the members of this club.  We understand each others lingo, quirks, fears and joys.  Through CaringBridge, CarePages, Blogs, Facebook, Email, and phone calls, we cradle each other with the gentleness of a shared experience.  I look at You and you and you.  All of you, with the deepest understanding, the fiercest love and the proudest of honor.  We are family.  The kind that doesn't get fractured.  We will be life long friends and advocates.  My heart bursts with the love of knowing you.

I am a mom, wife, sister, caregiver, compadre, warrior, goddess, advocate, woman.  Above all else, I am a Momcologist. Fiercely at your side.  Holding your heart, knowing your hold mine.   

Posted via email from MindiTheMagnificent

Your Child Has Cancer

We are all part of this Great Green & Blue Planet.  We all have responsibilities to ourselves and each other.  Most of us have Causes that are near and dear to us.  I have several:  The environment, Education Reform, Community Building, Peace, Love, Joy, Music, Empowering Ourselves.........  I now add Childhood Cancer Research and Support For Families with Childhood Cancer.  I should say "proudly".  I am proud to be part of this advocacy, just not the way it entered my life.  I'd give anything to have not had a personal relationship with this Beast.  It's not a "Gift", there's no "Lesson" to be learned, there's no "Reason" big enough to off-set what our family has been/is going through.  Then there's the fact the our youngest child has suffered.  So have our other two.  Nope.  Not worth anything in this world.  Don't let anyone try and tell you otherwise.

If you've been around me for anytime at all you'll know this:  SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH.  GOLD is the color for CHILDHOOD CANCER AWARENESS.  In this age of Social Networking and The Internet I have had the opportunity to get so know incredible people.  Movers and shakers, silent supporters, valiant warriors and goddesses.  Last Tuesday, September 7, 46 Mommas from all across the nation got together and Shaved For The Brave with St Baldrick's.  Why 46?  46 represents the number of families, every weekday, who hear the words, "Your child has cancer."  St Baldrick's is an organization that funds Childhood Cancer Research.  Second in Childhood Cancer Research Funding to the government.   On Friday, September 10, broadcast simultaneously over 15+ major networks, The 46 Mommas appeared at the top of Stand Up 2 Cancer's telethon to raise funds for Cancer Research.  Raising awareness for Childhood Cancer.  Stand Up 2 Cancer (SU2C) is an Entertainment Industry Foundation.  100% of donations to SU2C go towards Cancer Research.  Thanks to hard work within the Childhood Cancer Community, SU2C's dream teams are funding Childhood Cancer Research Grants.  This is an amazing accomplishment.  "Kids can't fight cancer alone" and neither can their Mom's, Dad's, Grandparent's, Caregiver's and loved one's.  The collaboration between these three organizations is groundbreaking and amazing to witness. 

The 46 Mommas shaved at the Hollywood & Highland Center in Los Angeles, California.  Several professional photographers were at hand to capture the moments.  This video was photographed and compiled by Ray Schiel.  Thank you, Ray.  This is a priceless gift.

Meet The 46 Mommas at 46mommas.com.

Watch the SU2C Telethon at standup2cancer.org.

Wanna see the impact?  Do a 46 Mommas Google search.

Want to make a difference?  Share this post.  Tell a friend.  Tell ten friends.  Wear GOLD!  Donate to 46 Mommas, help them reach their $1 Million goal.  Be A Shavee. 

Why?  For life, for death, for fear, for PTSD, for financial ruin, for Mom's, Dad's, Sibling's.  For Late Effects, for Chemo Toxicity, for Growth Failure, for Graft Versus Host, for AVN, for Cataracts, for Trauma, for Wheelchairs, Pink Puke Buckets, IV Poles, Central Lines, G Tubes, Neutropenia, Scars, Intubation........  FOR THE KIDS.  The HEROES. The WARRIORS.  The BRAVE.  They can't do this alone.  Neither can we.  Please.  Help us, help the kids.

Oh yeah. Watch out Childhood Cancer! I'm shaving next year with the 2011 46 Mommas!

Posted via email from MindiTheMagnificent

46 Mommas Shave For The Brave

Please go to www.46mommas.com to donate. 

Posted via email from MindiTheMagnificent

Bleeding at the keyboard

I would rather not dream, than have bad dreams.  It's been quite the roller coaster of emotions, the last several weeks. 

What is "normal", anymore?  There isn't one and there wasn't one.  Things evolve, circumstances change, life shifts.  We have been staying at HomeHome since Monday.  Today is Thursday.  Curtis had an Ortho exam on Monday and an eye exam on Tuesday, Gregory had labs on Wednesday.  We were planning on heading back out to The Water Retreat after labs.  Well.......  my car decided to call it quits.  It's currently at the dealer, getting fixed up. 

Since we have been at HomeHome for a little longer than before, it's been incredibly emotional, for me.  The house is far from ready for us to move back into and I want nothing more than to be able to settle.  It's been nearly 18 months of transitory living.  Living out of suitcases, boxes and hospital rooms, Ronald McDonald rooms and apartment.  My heart is aching to be HomeHome.  To unpack every last item, put them in their place.  To have Gregory's belongings on shelves, containers and a toy box.  Not cardboard boxes and pink puke buckets. 

Being HomeHome has also reminded me of how isolated and alone I've become.  I find myself questioning my existence BEFORE we met cancer.  The people I used to have in my life have all but disappeared.  I  know it's summer and everyone is incredibly busy.  Life marches on and we've been in a holding pattern.  I look around me and wonder, Who's left?  I feel out of control and dependent on everyone else, for everything.  Yes, I'm still managing quite a bit, parenting, general living and Gregory's medical needs.  There is just nothing that I have any control over.  Not that there ever really was, it was all an illusion.  The hardest part is the financial aspect.  I  have not been working since May of 2009.  Not having that little bit of independence is sometimes debilitating.  I  have to rely on everyone else for my financial well being.  Curtis and AnnMarie and also experiencing some adjustment woes.  They had been splitting their time between Daddy and Nana & Papa's.  Now that they are with me, full-time, it's getting used to the word "No".  It's been hard on all of us.  

When we left for Seattle, I had visions of our return to HomeHome.  Don't ask me where this came from, but I  e-nvisioned us coming HomeHome to a freshly remodeled, organized and pristine home.  There is no one to blame for that not being the case.  Life continues with it's reponsibilites.  You don't get a free pass, just because you could use one.  I've been fighting with this vision and have been trying to surrender to the fact that it's just not going to happen.  We will be returning HomeHome without the house being complete.  Which is OK.  I just want someone to wave a Magic Wand and for it all to be done.  Not gonna happen.  Surrendering to the reality is the best course.  I'm so tired of surrendering, though.  Tired of telling myself we are doing the best that we can and feeling like I am falling so short.  Tired of navigating the land mines that have been laid, from this experience.  I do not regret ANY of the decisions we have made.  No matter what choices were made, there would still be fall-out.  We would still be picking up the pieces and trying to repair what has been broken.  Broken is how I feel.  Badly in need of a tune-up.  Time is the only thing that will begin to set me right.  Getting up in the morning to do it all over again.  Making mistakes, setting boundaries, settling sibling disputes, navigating Gregory's needs, trying to find our way together. 

Curtis had his eye exam on Tuesday.  I knew he needed his glasses, but cancer got in the way and he's been without them for quite a while.  His right eye is nearly perfect.  Really doesn't need any correction.  When his right eye was covered and he was asked to read the chart, the tech had to keep moving the letters to larger and larger letters.  Finally, Curtis couldn't even read the Big E.  It absolutely floored me.  I had no idea his vision was that bad.  Once the realization of what that meant for him, I lost it.  Started crying as he was being examined.  I felt so bad that he has been compensating.  His right eye has been doing all the work and he has not complained even once.  He may not even realize that his vision shouldn't be that way.  He never has headaches and he does a ton of work with his eyes.  It's mind boggling how well he has compensated.  We went to ShopKo and he picked out his own glasses.  Blue.  He insisted they be blue.  Can't wait for that moment when he puts them on and realizes what he's been missing out on.  I just hope that he doesn't get headaches or eye strain as he adjusts to being able to see properly.  His orthodontist appointment went as expected.  He has at least six impacted teeth, including his eye teeth and the corresponding teeth on the bottom.  The ortho wants to remove four permanent teeth and he will be in braces for about 2 1/2 years.  Curtis did fantastic at this appointment, too.  The kid is growing up so nicely.  I also really liked the orthodontist.  Considering how much time we will be spending there, it nice that it felt right. 

AnnMarie has her first appointment with a female doctor, next week.  We have a lot to discuss.  Gregory gets to visit his "regular" doctor the same day and begin his re-vaccinations.  We will be seeing the same doc that Gregory saw at diagnosis.  It will be the first time we have seen him, since then.  Gregory has his Oncology appointment on Wednesday and The Big One's see the dentist on Thursday to get their fillings taken care of.  I'm trying to crank this all out before school starts so we have a clearer schedule.

Have not hear back, yet, on Gregory's labs from Wednesday.  I expect a call sometime today.  He has been stable.  It's the best we can hope for.  We are trying to enjoy every bit of these glorious summer days.  Once school begins, all bets are off.  There always seems to be some kind of bug going around at the beginning of the school year.  Once it passes, we are heading into cold/flu season.  Getting through this school year is going to take some fancy footwork.  Gregory is still immunocomprimised, which leaves him at risk of everything.  I had a dream last week, that Gregory had Epstein Barr Virus.  Which is the pre-cursor to Mononucleosis.  Mono is one tough beast and lasts for MONTHS.  It then remains in your body and can reactivate.  EBV is also the virus that they thought he had, prior to diagnosis.  JMML mimics EBV.  The nightmares, fears and demons are never far off.  I treat Gregory's health with kid gloves, only because we have to.  It's been a good plan of action, so far, and I  don't feel the need to change what's working.  He's not isolated or living half a life, just extra precautions.

The RugRats are getting ready to wake up.  'Til later, gotta jet.

Posted via email from MindiTheMagnificent

Will you be the one?

If I could write half as well as you all think I can, there would still be a gap in my ability to express what these last two weeks have been like.

I've had all three kids with me.  We've spent a few nights at HomeHome with Daddy.  We have been learning to live together, again, and I've been catching up on the changes Curtis and AnnMarie have experienced over the last 15 months. 

Being in my home as been strange.  The normal routine of dishes, laundry and meals feels decadent.  My kitchen, my kitchen tools, my washer & dryer, my kids' rooms.......  Familiar, yet new.  Curtis and I gutted his bedroom last weekend.  It was an amazing thing to do together.  Reminders of his quirks.  He hates the sound of Velcro.  I had forgotten and went to remove something that had Velcro.  He stopped in his tracks, threw his hands over his ears and so incredibly calmly said:  "Mommy, please don't do that.  Velcro really hurts my ears."  The fact that he was able to calmly and rationally express this is mind blowing.  Once upon a time, something like this was accompanied by an outburst, a meltdown and a long time to recover.  Not only is he learning what sets him off, he's learning how to express what he needs and deal with having to feel it.  On our way down to his room, he also firmly told me we could ONLY use "natural light".  Which tells me that the artificial light hurts his eyes.  Curtis and I are coming to a place where he can tell me what he needs and I can accept it and see that his needs are met.  It's quite amazing to be here.  I have spent so many years worrying over Curtis.  He and I have had some difficult years.  Times when I've wondered if we would ever connect, again.  Times where I've wondered what his future holds for him.  Wondered if he would ever be able to live on his own, in society.  He has come a long way.  Larry and I try to keep an open dialogue with him.  Reminding him about things, opening up different lines of communication.  Reminding him that above all else, we love him and he is free to feel and express who he is.  I know we have some dicey years ahead of us, but I'm confident in the foundation that he and I are re-laying.  Can't tell you how good it feels.

AnnMarie is my hardest.  I'm beginning to think it's more her age, than who she is.  It also has much to do with my own baggage.  She is trying to find her place in the world and being pulled in many directions.  She wants to be part of everything.  I can feel her insecurity and I am at a loss as to how to help her.  The only thing I can do is love her and make sure she has a safe place to fall. 

I've also come to the realization that parenting elementary age kids is so challenging.  Seeing a glimpse of what Curtis is going through gives me hope.  I think I'm really going to dig parenting teenagers. 

There have been so many times that I have found myself in tears, lately.  Over the simplest of things.  Not because these are events that I didn't think would happen, but because the simplicity of them is so beautiful.  We have had a far easier time of it than I expected.  The fact that we are not HomeHome, yet has been good, too.  It has given the four of us a chance to work out the kinks at a place that Curtis and AnnMarie consider a fun getaway.  We are taking this step-by-step and all is good in our world.  Don't get me wrong, they are still siblings, I'm still The Mom.  We have our run-ins and frustrations, fighting and yelling.  I think we just get over it quicker, now.

Gregory has been doing great.  He had labs and IVIgG, yesterday.  His port drew perfectly.  He is starting to go longer between IVIgG infusions.  It used to be every four weeks, May 17 was his last IVIgG infusions.  I have a theory that he's gone longer because he's not using it.  It's no longer cold and flu season so he's able to hang onto it longer.  The true test will be how long he can go this fall/winter/spring.  We have been struggling with his Sirolimus levels for several weeks, now.  At least since his admit in May.  It goes down, we slowly increase his dose, then the levels begin to sky rocket so we decrease his dosage.  I have a feeling we will be increasing it this week.  He's been throwing some white cells that are usually not there when his levels are good.  Here's a question for anyone who might understand this......  Doc mentioned at his last appointment that he had some "GVH Cells" in his counts.  Eosinophills to be exact.  I've never heard these cells referred to as "GVH Cells" and was wondering if anyone out there had.  I do know he has been experiencing a small flare, lately.  Which would correspond with the presence of these cells.  We finally received our packet of paperwork from his follow-up in Seattle.  His prednisone taper was not included, I call and had one mailed.  He is due to taper the second week of August.  Just a tiny taper.  He is still at 1mg/Kg every other day.  Doc stated that we would not even consider tapering his pred until he has been GVH stable for some time.  Which is really good news.  Gregory begins his re-immunization on the 10th of August and I would prefer that he not be in the middle of a taper.  If he experiences side effects from the vaccinations, I'd like to have a clear picture that they are vaccination side effects and not a GVH flare from tapering his prednisone.  We are still going in for weekly labs and every-other week exams.  If his Sirolimus would stabilize we would be able to start spreading these visits out, but........  *shrug*

We started the "health catch-up" craziness with Curtis and AnnMarie.  They had dental appointments this week and it's all good news.  AnnMarie has had a blackish/grayish spot on one of her front teeth, near the gum.  It looked really nasty and I was fearing the worst.  As it turned out, it was lots of pieces of HAIR!!!  The hygienist that cleaned her teeth had to get tweezers and carefully pull each hair out.  AnnMarie has a habit of chewing on her hair.  Can't tell you the relief I felt that it was JUST HAIR!  She also only has two small cavities.  No big deal!  Curtis only has one tiny cavity!!!  Curtis' "bigger" issue is the size of his teeth in relation to the size of his mouth.  He has giant, strong horse teeth.  We knew he would need braces and before Gregory was diagnosed it was a manageable thing.  He was supposed to get them last spring and there was not way this was going to happen.  Not to mention the cost.  Curtis' upper eye teeth are trying to come through his gum line.  there is just not enough room for them to descend into his gum line.  Several years ago, he had teeth that actually came in through the roof of his mouth, because there was no room in front.  We have been referred to a dentist that takes Curtis' medical coverage for Orthodontics.  It's case by case and based on need.  Curtis needs it, without a doubt.  This is something else that I am incredibly grateful for.  They also have eye exams, soon.  Curtis needs new glasses and I know AnnMarie will now need a pair.  Soon all five of us will be wearing spectacles.  

This is also the time of year when we (the childhood cancer community) start to gear up for September.  September is Childhood Cancer Awareness Month.  I don't have my fact sheets in front of me but here is one fact that sticks with me and is hard to swallow.....  For every $100.00 dollars donated to The American Cancer Society, only $00.70 goes to Childhood Cancer Research.  Yes, you read that correctly.  Seventy cents of every one hundred dollars.  If you want to make an impact on research for childhood cancer and simply want to donate funds, I recommend donating to St Baldricks.  We currently have an amazing group of women, 46 Mommas.  These women are Shaving For The Brave.  St Baldricks events, across the country, have raised over $20 million, this year so far.  St Baldricks is the largest contributor for childhood cancer research, second only to the US Government.  If you can, the 46 Mommas are shaving in September and would like your donations.  Why 46?  On average, 46 kids are diagnosed with Childhood Cancer, every day.

Why donate? 

• Anna was Cancer Free when she died.  She died from Chemo Toxicity
• Makiah had a liver transplant, her cancer invaded her new liver and is being sent home on Hospice.
• Cameron has had THREE Stem Cell Transplants for JMML and is now in the grips of SEVERE Acute Graft Versus Host
• Rhema has relapsed with DSRCT at the age of 13.  Just a short time after being found No Evidence of Disease.
• Anna & Maddie are siblings.  BOTH diagnosed with ALL.
• Tyler has relapsed Stage 4 Neuroblastoma. 

This is just a TINY list of why.  Death, relapse, late effects, GVHD.  Someone asked me why I focus on the ones who are struggling and don't focus on the ones who have a strong life and survival.  It's a valid question, but one that isn't answered with a very bitter taste in my mouth.  The side effects of today's childhood cancer treatments are horrific.  Yes, you could say that these kids (the ones that survive) have strong lives.  Yet, no.  Not really.  I'm not a scientist.  I'm just a momcologist who is wishing and dreaming of better treatments, survival rates and successful, healthy lives for the children of the generations to come.  Cancer will not go away on it's own.  We need to advocate, raise awareness, raise funds and show the movers and shakers that this has got to stop.  We need scientist who are willing and funded to think outside of the box.  Scientists who doggedly pursue research in immunology.  Scientists who are breaking the DNA code to obtain better matched Stem Cell donors to recipients.  Those of us who have lived this need help.  Will you be the one?

*stepping off my Soapbox.  Kinda*

Life is good, life is filled with love, life is bittersweet, life keeps plugging along.  We are facing it head on and embracing every moment.  'til later.  Gotta jet.

Posted via email from MindiTheMagnificent

The beginning of The First's.

I don't even know how to begin an entry, anymore.  These past few weeks have been filled with Busy.

Gregory had his surgery on the first.  They removed his Hickman central line and place a port.  They also replaced his G-Tube with a Mic-Key.  We stayed overnight for observation, at my request.  We probably could have gone home, but I did not want to risk it.  Gregory did FANTASTIC!!!  Overnight his oxygen levels did decline to the mid 80's, but I have a feeling that this is not unusual for him.  It could also be that the pain from his surgery caused him to take shallower breaths.  *shrug*  There really is no way of knowing, since I don't monitor is O2 at home.  His oxygen seems to be OK when we are at clinic.  He's been between 93 & 96 the last several weeks.  I still think he need a pulmonology consult, just to be on the safe side.  His counts the following week were outstanding.  He did suffer from a gut GVH flare this last week.  His appetite dropped to nearly nothing, a mild tummy ache and his classic GVH poo's.  He seems to be recovered from it, except his appetite is still pretty low.  I've been keeping him out of the sun and the heat.  His body is not ready to deal with the extreme heat, yet.  Over the fourth of July weekend he had his first "Real Bath" since February 2009.  He has been in seventh heaven. 

Fourth of July.......  Last year's fourth fell less than 30 days after Gregory's transplant.  He was soooooo sick.  This year we sat under blankets, under the stars, on the water and watched with fascination and awe.  Gregory was tickled pink with all the fireworks.  As we were sitting there I kept thinking back to last year.  Couldn't help shedding a tear or twelve.  It was absolute perfection. 

AnnMarie spent a few days with us, then we switched out for Curtis and now both of them are with us.  Having them around is an adjustment for all of us.  Balancing their individual needs, along with Gregory's.  I'd forgotten how exhausting it is to parent Curtis and how often AnnMarie gets left in the dust.  Not to mention the fact that both of them are maturing and maturing FAST.  I'm on FastFoward trying to catch up and figure out where they are at and what they need from me.  It's been good to have them both out here, despite the fact that it's been really cold the last few days.  The weather doesn't seem to stop AnnMarie, though.  I don't think it was above 75 today and she was in the water on several occasions.  She DID NOT get that from me.  

I'm also remembering what it means to be pulled in lots of different directions.  Gregory and I have had the luxury of doing this alone, setting our own course.  Gregory has benefited greatly from this.  His overall health is top notch (all things considered).  Now it's just a matter of getting back in the saddle.  I know I keep saying this, but we hope to be HomeHome, soon.  We are more than ready.

I also attended my first funeral for a child with Childhood Cancer.  Thankfully enough time has passed and my initial reaction has faded.  During the service the priest spoke of how God knows everything.  How we are put on this earth for a purpose and God won't take us until our mission is complete.  I was so angry with this priest and his words.  Not specifically at him, but at the notion that God knew about Anna's cancer and in God's eyes, it was OK.  That Anna's seven years could be considered a completed mission.  This doesn't represent all that triggered my anger.  I'm having troubles remembering his words.  Thankfully!  The message that I received was that it was OK that Anna died.  B.S.  I understand that this is what some people need to hear, I understand that people THINK this is was some people need to hear.  I understand that I have the right to believe what I want.  I just felt that the words were so disrespectful to Anna and her family.  There is a huge gap in their family now and absolutely no way to close it.  I don't care how much faith you have, the death of your own child will NEVER be OK.  

Whew.  *breathe* 

Gregory has been experiencing all kinds of new "firsts" this month.  After our one year follow-up in Seattle, I've gradually been cutting loose the ties that bound us.  Just to name a few:  We had fresh flowers in the house.  AnnMarie and Gregory picked Clover flowers from the yard and we had them in the kitchen. ~  Gregory got to have hand-scooped ice cream from The Scoop. ~  Gregory had fountain soda. ~  Gregory had soft serve ice cream.  ~  I did not have to steam his deli meat before serving it to him.  ~  Gregory got to play at the McDonald's Playplace!  ~  We do not have to be isolated in an exam room when we go to clinic, anymore.  Gregory gets to be in the playroom, play with the kitchen set, see other kids and sing with Terry.  Daddy is planning on taking Gregory to his first movie on Wednesday.  Ironman 2 is on the agenda, then the five of us are going to have dinner, TOGETHER, in a RESTAURANT!!! 

He is still immunocomprimised, but we can do some "normal" things with added pre-cautions.  I finally received his schedule for re-immunization.  I have a few questions about it.  He cannot, ever, receive a vaccine with live virus.  Which means he can't have the Chicken Pox Vaccine.  I don't think they have a killed virus version.  This concerns me.  He also will never be able to receive the Small Pox Vaccine.  This I am terribly happy about in a really sick and twisted way.  Due to his health status I don't think he would be able to enlist in the military, but....... since he cannot have the Small Pox Vaccine, he will.  not.  ever.  be able to join the military.  Can't tell you how much this pleases me.  Gregory cannot get his MMR (Measles, Mumps and Rubella) Vaccine until one year has passed after he completes ALL immune suppression medications.  Which means I have no earthly idea when that will happen.  The chances of him being exposed to these diseases are slim.  I'm trying to find a way to be notified if there is an outbreak.  Of any kind.  I need to call out local health district and see if they can help me out.  I know that he could be exposed long before an outbreak is even recognized, but I'd still like to be informed.  This is one of the chances that we take.  All of our lives are filled with risk, we just don't know the level.  Gregory's is known and the only way to prevent it is for him to live in complete isolation.  Ha!  Not going to happen.  He still needs to LIVE.  

This week I also scheduled dentist, doctor and eye exams for Curtis and AnnMarie.  They haven't had routine visits for quite some time and they are seriously over due.  I KNOW AnnMarie needs glasses and Curtis needs new ones.  AnnMarie's teeth are all kinds of messed up.  They both desperately need to see their doctors, just because they are growing up.  I found an eye doctor for Gregory, here in town.  I was hoping to find a pediatric eye doctor that knew about Graft Versus Host and the eyes.  I don't think it's going to happen.  I scheduled him with a doctor at Spokane Eye Clinic.  It's a rather large clinic and I find comfort in that.  There is bound to be a doctor or two that has experience with Eye Graft Versus Host and Gregory's doctor can consult with them for advice.  Gregory doesn't have Eye GVH, but that doesn't mean he won't.  I want to be prepared.  He will continue to see his eye doctor in Seattle, annually.  He is well covered.  His cataracts need to be monitored every six months, which is why he needs a local doc.  Also, if anything acute arises.  

For posterity:  Gregory, without a doubt, has toe nail GVH.  He has an ingrown toenail, his right big toe.  His toenails get really thick and when they grow out they grow into the toe.  Once they get long enough, they start to peel right off at the demarcation between thick nail and new nail.  He has had this happen to a few toes, now.  Not only is the pain an issue, but it puts him at risk for infection. 

I feel the need to explain GVH.   Gregory's new marrow is the GRAFT.  The new stem cells were transfused into his body, found their way to his bones and ENGRAFTED, to form new marrow.  Gregory's body is the HOST.  Gregory's GRAFT doesn't recognize his body (The HOST) as belonging to it.  The GRAFT (new marrow) is making antibodies to attack what it doesn't recognize as belonging.  Mostly in the case of T-Cells, which are part of your immune system, your white cells.  These white cells have a life span of 5-10 years.  His current medications are suppressing the making of new cells.  They are only suppressed, not completely stopped.  He is still making a few, which is why he can be immunized.  The idea is to train the cells to live peacefully in Gregory's body.  There is not estimate of how long this could take, if ever.  We just manage the symptoms and deal with flares as we go along.  Yep.  The life of a Stem Cell Transplant Survivor.  At least Gregory's experience.

It's time to sign off and do a little reading before my eyelids get heavy.  I'm currently reading The Girl Who Played With Fire by Stieg Larsson.  I'm not a mystery fan but these books are GOOD!!!  It took me a while to get into The Girl With The Dragon Tattoo, but once I did, I could not put it down.  It's selfishly unfortunate that he died shortly after submitting the manuscripts for these three books.  I wanted to mention, too, that I read Three Cups of Tea.  What an awesome book.  I came away from that with a very changed heart and inspiration. 

I'm gonna go kiss all three of my OffSpring.  They are sleeping soundly the there cheeks are crying out for Mommy (or as Curtis now calls me, MOM) attention.  I just might whisper in their ears, too. 

With Hope, Peace & Love.

Posted via email from MindiTheMagnificent

Getting this out so I can REALLY write.

I wrote this a few weeks back and didn't feel like finishing/posting it.  Here it is, for posterity.  I think I wrote it the weekend of June 19/20.

I've been sitting here, debating about writing.  I usually have Sarah McLachlan on constant play, during the nighttime.  Angel is now playing.  Right now my Angel Arms are my fellow Childhood Cancer families.  A couple Dads, but mainly the Moms.  I've had several conversations on this topic.  There is just something about the female DNA that causes us to reach out, share, comfort, validate and just plain commune.  If it wasn't for my fellow Momcologists I have no idea where my head and heart would be.  Every last one of you, no matter where you are at with this beast.  YOU are my lifeline, my phone a friend, my 50/50.  So glad to be here with you all. 

A few things:  When we arrived in Seattle last week?  Monday we had to report to clinic at 10:00.  On the way to clinic a guy pulled up next to us, motioned for me to roll down my window.  He informed me that I had a flat tire!  I made it up the hill and to the closest gas station.  We weren't very far from clinic, at that point.  If I had called AAA at that point, we would have been late for the day.  I filled up the tire with air and drove to clinic on hopes and wishes.  We made it, with air to spare.  After our day was done, I called AAA.  One of the sweetest "retirement age" man showed up.  He was one of those stereotypical Grandpa types.  Gregory was absolutely fascinated.  The AAA guy showed up in a little pick-up with a cover over the bed.  He lifted the cover and it was filled with all kinds of tools and equipment.  Gregory is FASCINATED with the mechanics of stuff and TOOLS.  The AAA guy proceeded to lift the car, take off the wheel.........  Meanwhile I talked Gregory through every step.  Come to find out, something had punctured the tire and fallen out.  Mr AAA happily offered to plug the hole.  It was a stressful event in the morning that turned out to be a lot of fun for Gregory with a very happy ending for the tire and our pocket book.

We left Seattle at 5:00, Friday evening and drove across the state and into Idaho.  It was kind of a strange drive home.  Gregory fell asleep right away, the first couple of hours were very quiet and it allowed me to digest the weeks events and chew on the results we had received, just hours before.  Gregory was still tired and as we neared the 2/3 point of the trip, it was starting to get dark and he wanted to fall asleep.  Except he got really scared.  Of what I'm not sure.  He has been progressively scared of the dark.  Not quite sure where this is coming from, but I have a feeling it has something to do with his sense of security and everything he's been through.  We hit the Water Retreat at precisely 11:00 that night.

I really don't remember Saturday or Sunday.  We spent most of the time just hanging out and rebuilding our reserves. 

Monday we had clinic with our HomeHome doc.  It was mostly uneventful.  Except for Gregory hematocrit.  Just the week before his crit was 37.  Seven days later it was 29.  It could have been a fluke draw, so we re-drew it.  Nope.  It was 30.  So doc had us come in Thursday for a re-draw.  Thursday's crit was 31.  Which is not much higher, but higher is so much better than lower.  I  don't have an explanation for it.  I  have a feeling it's GVH related, though.  The previous week was crazy on his system.  After clinic we went to ShopKo to pick out his new eye glasses.  Good gravy, this child of mine.  I let him look through and try on all the glasses he wanted.  This is HIS choice.  He is the one who has to be Ok with wearing them, so I let him take the lead.  Without ANY input from me.  You know that saying:  The fruit doesn't fall far from the tree?  Well, this precious child of mine selected the cutest pair of RED Stainless Steel frames.  OMG!  The temples have a faceted look to them, so they kind of sparkle.  I cannot wait for them to arrive.  He looks so stinkin' cute in them.  He is also very proud of them and anxious to receive them.

Tuesday we had his panoramic x-ray for his teeth.  It's not a typical part of his care, but I really wanted to know where we were at with his teeth.  The good news is that he has all of his adult teeth.  The development is delayed.  This we expected.  Now it's just a matter of monitoring them and seeing what the next several years will bring.  There is no guarantee that they will develop properly, let alone develop at all.  The only thing we can do is wait and see.  Despite the fact that there is absolutely NOTHING that can be done for his teeth, at this point, I REALLY  NEEDED to know what was going on behind those gums.  Knowing what's behind there doesn't change anything, but it stops the questions in my brain.  The wondering.  I know I've mentioned this before......  I LOVE our pediatric dentist.  It used to be strange, in the beginning.  Dr C and I went to the same high school.  His dad was my dentist.  The care that he has given Gregory has just been so outstanding.  Everyone at Children's Choice is top notch.  Thank you, guys!!!  

On the way back to the water, we picked up AnnMarie.  She spent Tuesday, Wednesday and Thursday night with us.  It was very busy, she and Gregory had a ball together.  Gregory played hard, laughed and ran around.  I really enjoyed having her with us, too.  Although, this place is so stinkin' small.  Cannot wait to get HomeHome.  We dropped AnnMarie off with Mom and Dad on Friday.  We met at Albertson's and decided to make a spontaneous trip to my favorite ice cream shop, The Scoop.  Gregory hasn't had hand-scooped ice cream since before transplant.  The Scoop is in a really pretty neighborhood and we sat outside, ate ice cream and listen to some live music.  Meanwhile Curtis and AnnMarie chatted it up with anyone who even glanced their way.  After being away from them for so long, I've forgotten so much.  While we had a good time, it was so stimulating.  I felt like I had a permanent "Deer in the headlights" expression.  Trying to look out for Gregory, try to keep Curtis within his bubble and AnnMarie's constant chatter.  I used to be able to juggle it, or at least I was comfortable with ignoring a large portion of it.  It is going to take some practice to get back into the swing of things.  

I know I mentioned school for Gregory.  So.  Our kids are receiving a Montessori education.  Montessori is divided into three year age groups.  Gregory should have started his 3-6 years in the '09-'10 school year.  This next year would have been his second year, instead it will be his first.  Academically I think he is up to speed.  Socially is another thing.  I also have no idea how many days a week he is going to be able to attend school.  We are planning on five days a week and mornings only.  We will see what happens.  He really needs the peer interaction.  I am so used to his vocabulary.  Today he said something to Nana and it blew her out of the water.  Gregory's vocabulary is VERY advanced.  Always has been, but when you are four and spend ALL of your time with adults, what else can be expected.  We have yet to register him.  Summer time is a very difficult time to register for the next academic year.  It will all work out, though.

He has labs only, on Monday.  Thursday is his FIFTH birthday.  The following Thursday is his surgery.  They will be taking out his Hickman Catheter and placing a port.  They will also be changing out his G-Tube.  July 1 can't come quick enough.  With his elevated level of activity this week, his G-Tube has been really giving him grief.  So bad that on the way out of the grocery store, tonight, he stopped mid stride and doubled over in pain.  I picked him up and he twisted his tube around and continued on.  He's a little resilient.   

Posted via email from MindiTheMagnificent

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!

Ask me anything

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.

Ask me anything

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.

Ask me anything

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.

Ask me anything

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.

Ask me anything

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.

Ask me anything

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