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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

Same kid?

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

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 

I am a Momcologist.

I have re-located my blog. This and all my writings can now be found at: http://www.mindithemagnificent.com/ 

September 18, 2010, I was honored to speak at our American Childhood Caner Organization/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 choir.  The parents, siblings, grandparents, caregivers, 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 with 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, com padre, warrior, goddess, advocate, woman.  Above all else, I am a Momcologist. Fiercely at your side.  Holding your heart, knowing your hold mine.    


Here we are, in the home stretch.
Gregory and I. May, 2009. A few short weeks before Transplant.

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.
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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.
Greginator 048 copy


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

Twitter Feed

Hey everyone!!  I moved my twitter feed to it's own journal.  If you are interested in it it can be found at magnificentwit

46 Mommas Shave For The Brave

46 Mommas Shave For The Brave

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

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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.

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.
Short 'n Tweet

  • 19:21 Just now leaving. That was eventful! (@ Applebees) 4sq.com/d7BRlV #
  • 19:48 I wouldn't be w/a Suit again, but there is something to be said about a fresh pressed white shirt against a well groomed & tanned face. #fb #
  • 19:50 RT @brvstrngkds: It's @46mommas' Honored Kid Kale's 4th b-day! He &lt;3 mail & we &lt;3 him! You can send a card, too! bit.ly/bIsQSJ #fb #
  • 19:53 RT @mamaplug It's like being thrown into medical residency w/o completing the coursework & it's your kid you need to save. #momcologist #fb #
  • 20:15 Brandy needs us. Crap! I &lt;3 this family! www.caringbridge.org/visit/delilawhittenton #momcologist #childhoodcancer #fb #
  • 22:01 What a day! A great day, we are going to sleep well tonight! (@ Water Retreat) 4sq.com/bEXT4R #
  • 23:00 Bridget needs us! Pls see 1st entry for 7/14. www.caringbridge.org/visit/makiahbartsch #momcologist #childhoodcancer #fb #
  • 23:20 Test @flickr post!! Gregory on his Lilly Pad, one year ago. #fb flic.kr/p/6FiTBq #
  • 23:36 Janae needs us!! www.ladybughugs.org/audri.php #childhoodcancer #momcologist #fb #
  • 00:11 ♥ Love is the big booming beat which covers up the noise of hate. ♥ ~Margaret Cho #fb #
  • 01:14 Teresa needs us. www.caringbridge.org/visit/carolinedill #childhoodcancer #momcologist #fb #
  • 11:54 "I wish I woulda known then what I know now. And now, I can't unknow...." tiny.cc/zel0k #childhoodcancer #momcologist #dadcologist #
  • 12:23 RT @Fiveoh4upliftin: "Kindness is the language which the deaf can hear and the blind can see." ~Mark Twain bit.ly/dkP7m0 #fb #
  • 14:47 Feel the vibe from here to Asia. Dip trip. Flip fantasia. ......... Diddy diddy bop. #fb #
  • 16:15 Bow wow wow, yippy yo, yippy yay...... #fb #
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  • 19:25 RT @abolishcancer: Wow, Daisy started with 85 followers and is now at 300. Keep spreading the word about this little angel @HopeForDaisy #fb #
  • 20:00 I wish there was a solution for Asperger's. It's exhausting. #fb #
  • 22:22 Just now getting to Sunday Secrets. Yeah, It's been busy. #fb #
  • 23:41 Travis is stateside. #fb #
  • 01:03 The beginning of The First's. www.caringbridge.org/visit/gregorybibb #
  • 08:51 Liz needs us. www.caringbridge.org/visit/sheaanderluh #fb #childhoodcancer #momcologist #
  • 09:29 July 14, 2009. Day +33. ENGRAFTMENT! (Along w/a little BK on the side.) thegreginator.livejournal.com/48796.html #childhoodcancer) #
  • 09:40 Krista needs us. www.caringbridge.org/visit/koriquinn #fb #childhoodcancer #momcologist #
  • 10:17 Seriously. @flickr REALLY needs a "tweet this" option. #fb #
  • 10:55 RT @CUREchildcancer: Our sole focus is the cure for #childhoodcancer. ht.ly/2bqKm #fb #
  • 13:04 I just became the mayor of HomeHome on @foursquare! 4sq.com/aN54MG #
  • 13:04 Doing laundry! Gregory and Daddy are going to see Toy Story 3! Another First! (@ HomeHome) 4sq.com/aN54MG #
  • 14:42 Amy may be Bitter, Angry and Crazy, but she is far from alone. www.caringbridge.org/visit/ryanpatrick/journal?jid=5796227 #fb #
  • 15:02 Doing me own laundry, in my own house, with my own detergent feels awfully decadent. Leaving tonight is going to be HARD! #fb #
  • 16:41 RT @MariaMontessori: Allowing your child to experience failure is one of the greatest gifts you can give her. #fb #
  • 16:43 RT @brvstrngkds: &lt;3 Malachi Redbird Smith, forever 3 &lt;3 ATRT (atypical teratoid rhabdoid tumor) #fb #
  • 16:47 We members of the #momcologist club are a Fierce Force to be reckoned with! I &lt;3 these Mommas! ---&gt; @46mommas #fb #
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