MindiTheMagnificent's Open Salon Blog

Survivorship ain't all that and a bag o' chips.

Tue, 27 Nov 2012 15:11:29 -0500

It's been a bizarre 24 hours.

Not long after dropping off The OffSpring at school yesterday, I get a phone call from the school nurse at Gregory and AnnMarie's school. She and I have a long history and I love receiving calls from her. Yesterday was different.

She was calling to give me a heads up. Over the Thanksgiving weekend, one of the kiddos in a neighboring classroom to Gregory had Scarlet Fever. What happened next still leaves me reeling. I had an overwhelming and visceral response to this perceived threat to Gregory's health. A metric ton of adrenaline dumped into my blood stream. My brain zeroed in, found the checklist in my database and went to work.

How close is the threat?
Check in with oncology.
What were his last counts?
How recently was his body under stress?
How did he look/behave this morning?
Will this child have infected any other students?
Look up Scarlet Fever.
How does it present?
What are the symptoms?
Is his pediatrician prepared to treat Gregory aggressively enough for his unique situation?
If he does develop Scarlet Fever, is an admit imminent?
Who will care for the other kiddos if we are admitted?
How in the H-E-DOUBLE HOCKEY STICKS am I going to handle something like this while going to school, myself?
Don't panic. Get information. Breathe. Exhale.

All of this flashes across the membrane of my brain at light speed. I can feel my feet dig into the floor. My hands and pits start sweating profusely. My gut sinks and my heart races. I fight the overriding urge to go claim him from school, this very second. Without delay. The walls go up and I find myself in Warrior Mode.

After getting what questions I could answered, I start to come down. Start to. Then the shakes begin and I pop a giant headache. My pits drenched. Tears are threatening to flow.

Shit. We have had months of bliss. Yet, my body remembers. It's automatic. I have no control over it. Really, I don't.

Don't tell me Scarlet Fever is simply strep. Strep can turn into Scarlet Fever in people who's immune systems are less than normal. Hello? That is my kid. Will forever be my kid. Regular illnesses are no longer 'regular'.

My brain realizes that he will, most likely, be OK and never even get close to contracting this. My body and my heart need to catch up. I can't seem to shake the headache and I find myself weeping at the slightest lowering of my guard. As I went to sleep, last night, my neck and upper back ached like I had lifted weights all day.

The threats are real, we cannot hide from them. I am really trying to live with a balance between being protective and being free. These things sneak up and take my breath away. I am learning how to parent and caregive to a bone marrow transplant/cancer survivor. Learning how to establish a trusting relationship with his pediatrician. Trying to figure out how to manage Gregory's bodily demands, demands that we have zero indication as to what they will be. It is an intricate dance.

Then we have a moment. THIS is what I am forever fearful of losing. DEATH is my biggest fear. I know we are all susceptible to having this happen to anyone of us. Yet, there is something unique to having stared death in the face, manage to skirt it's clutches and realize that it is still waiting around the corner. No. I am not negative or morbid. I live in the brilliant light of life and gratitude. I also dwell in the dark places. We all do.

(OS won't let me embed a youtube video. Here's a link to what is missing.)

I NEVER want to forget that belly laugh.

Covering you in love,
MindiTheMagnificent
~Momcologist

Blood Letting

Thu, 1 Nov 2012 03:11:19 -0400

NaBloPoMo November 2012 ~ Tell us your favorite quotation and why.

“There is nothing to writing. All you do is sit down at a typewriter and

bleed.”~Ernest Hemingway

This is what writing has come to mean for me. Yes, I write for posterity. Yes, I write for advocacy. Yes, I write to keep you up to date. When it comes down to brass tacks, I write for me.

I write to hear my voice. I write to purge my heart, to bare my soul, to share a piece of me. What a better way to describe this very vulnerable and personal act than as a blood letting. My writing has coagulated. It is thick, sticky and scabbed over. I pick at it from time-to-time. It itches and I am desperate to pull back that scab and let the fresh blood flow.

I am afraid, though. I'm afraid of the mess it will create. I'm afraid that it will smear all over you and stain everything it touches. I'm afraid that when I see you in person, you will recoil upon remembering my words.

I'm no longer living out loud in isolation. My world is no longer confined to a hospital room, a clinic visit, a home with four walls. I'm branching out into the great beyond. Taking risks and stretching myself into the world of flesh and blood people. My courage now needs to grow larger to match my real life reach. I'm no longer safe behind the digital screen. My vulnerability is very much alive, but I need courage to let it flow. I need strength, too. Strength to handle the emotions, expressions and conversations that come from the words that spill from these fingertips. I know you are reading these words and we will cross paths, in flesh and blood. I want to invite you to the places I dwell.

I am learning how to live a life that can have commitments, while keeping the spirit of impermanence. Making plans, keeping a calendar that is not filled only with doctors appointments. Trying not to slip too much in either direction. Too much planning and I fear I will easily succumb to The Daily Grind. Living planned activity to planned activity. Not enough commitments and I fear free falling into nothingness. With nothing to tether me to the thing called living and finding myself just trying to survive each day.

The idea that I am trying to express is ethereal. I want to keep the wonderment and awe that I find myself in these days. I want to constantly and consistently remember that THIS moment is what matters. THIS moment is perfection. Even if it is filled with pain and suffering, THIS moment is the one that counts. I can get lost in this, though. So lost that I have not done any living. I have also found that it makes people uncomfortable. It takes people out of their comfort zones. It brings to light how much of our lives are lived on auto-pilot. Just doing enough to get by. I do not want to return to living in that fashion.

Consistent writing could possibly be my lynch pin between a planned life and one of impermanence.

Which means, I continue to bleed.

I got this.
~MindiTheMagnificent

How COULD I forget?

Sat, 22 Sep 2012 10:09:01 -0400

When Gregory was well enough after transplant for us to return HomeHome, we came back to the Spokane area and moved into our family's Water Retreat. Around eight months post transplant, I was having a conversation with a friend of mine. I hesitate to share these next words. They are so steeped in emotions that I have been keeping them tucked in my heart. I'm not even sure of my intent to share them now. I know I cannot 'release' them. They are branded into my heart and my soul. The red-hot branding iron used to imprint them in my being still leaves behind a raw wound that I find myself picking at, from time-to-time.

We had been discussing Gregory's current state of health. The conversation shifted and she asked, "What about Curtis and AnnMarie?" I don't recall the exact words, but she asked me, "Have you forgotten that you have two other children?"

*blink, blink, blink*

I was put in a position of having to justify why all my time and energy were put into saving the life of my youngest. You really cannot understand what this Odyssey is all about, until you experience it. Gregory's life hung in the balance and as a mom, his caregiver and the Momcologist that I am, it was and still is, my responsibility to get him through this and protect him any way I can.

Which meant that I trusted that Curtis and AnnMarie's Daddy and my mom had it covered. I told myself that a period of separation was far easier to deal with the aftermath than a lifetime without Gregory. Daddy and I made the decision to divide and conquer. I'd like to think that the decision we made really did help to save Gregory's life. I'm also willing to admit that this belief is also filled with ego. I've mentioned before that the reason's for Gregory's survival are inexplicable. Crap shoot. Roll of the dice.

I've never really taken the time to write about how this has affected the siblings, Curtis and AnnMarie. The trauma of Gregory's diagnosis, my immediate absence from their presence and my physical absence for 15 months. Even when we returned HomeHome in August of 2010, I was not completely available for them. The return to HomeHome brought on it's own host of adjustments and emotions.

Yet, Curtis and AnnMarie continued to age, continued to grow up and continued to witness their broken mom who spent nearly all her time with their brother. The last year has been much better. We are working on what we can as it comes up. We have (hopefully) re-established a sense of security They know they are loved by me, unconditionally. We still have moments. My GAWD, do we still have moments. Gregory is the youngest, naturally his contributions to the family are age appropriate. His siblings still see a disparity and think he is being favored by me. I don't think this is something that we will ever get over. As special as Curtis and AnnMarie are, there is not getting around the fact that Gregory is, was and will always be favored on some level. *big deep breath* Did I just admit that?

One thing that I know for certain: I am doing the best job I know how to do. I have not failed any of my OffSpring.

They will have a bit of brokenness about them as adults. Truthfully, who doesn't. My hope is that they will recognize it and understand that it is no one's fault. My hope is that all of this talk, talk, talking we do will open their hearts and their brains to see that we made the best decisions for OUR FAMILY. My hope is that it won't take them having their own children in order to see the love that surrounds them.

Siblings of kids diagnosed with cancer get the short end of the stick. I don't have any suggestions or ideas on how to better support them. WHY? The answer lies in the circumstances. The people they need most, their parents, are largely not available to them. For long periods of time. No matter how many people step up and offer support, these people are not their parents. I have lost a solid three years of Curtis' and AnnMarie's life. Gregory is now the age AnnMarie was at his diagnosis. I can't reclaim those years. I can't undo the hurt and abandonment that happened.

I can show them love. Thankfully I have an unending supply and it's easy to offer.

To ALL the siblings. Giant heaps of unending love....
MindiTheMagnificent
~Momcologist

Five weeks before diagnosis. January 2009

Magic and Miracles

Thu, 20 Sep 2012 02:09:55 -0400

The sun is hot in the mid-afternoon Indian Summer day. He steps out of his classroom, shakes his teacher's hand farewell and stops at the top of the stoop. Scanning the sea of parents faces. Searching for me. Searching for his touchstone. I stand there and wait. It kills me to just wait. He sees me and bounds down the stairs. I drop to my knees and wrap my arms completely around his slight body. He squeezes my neck, as if to stop my breathing. It is at this point that I begin to breathe, again. We have been separated for six long hours and I long to have him within my eye sight.

This is picking up Gregory from school. He has proclaimed that I MUST wear my Momma Fedora so that he can spot me easier at pickup. I comply. Wholeheartedly. Morning drop off includes hugs & kisses, high fives and I Love You sign language, then 'just one more' hug and kiss.

We have been connected at the hip for 1,289 days. Three years, six months and twelve days. Every moment of this past time has been spent with me and if not me, my mom or his daddy. This is the first time EVER he has been in the care of people other than his family. This is a necessary step for his development. Yet, we feel our separation deeply. I can't really focus when he is at school. I flit about and cannot settle on any meaningful tasks. I know this will fade, yet....... cold and flu season is quickly approaching. I can feel my anxiety building. My gut tells me his immune system will rock this season. My brain and what I have witnessed speaks otherwise. I am cautious, I am wary, I am on full alert. We are still taking risks, though. His system needs to be challenged and we will deal with it as it comes.

I can't tell you if he enjoys school or not. If I were a fly on the wall during class, I'm willing to bet you that he is having a ball. He is making friends, has a phenomenal teacher and working with amazing materials. His life at school is vibrant. I think that being with me reminds him that we used to be together 24/7. Is he feeling guilty that he enjoys school so much? Maybe. Does he realize that a large part of my life revolves around his well being? Totally. Do we have a connection that cannot be put into words? Without a doubt. Does he get any of this on a conscious level? Not one bit.

We are taking it moment to moment, day by day. Making it up as we go along and riding this wave of survivorship.

There is an electricity when he and I walk the halls. Those that have followed us are acutely aware of how BIG it is that he is now a first grader and attending Montessori at Jefferson. Even the students are aware of how amazing his presence is. At least those that have been with AnnMarie for the last 1,289 days.

He was out last Friday with congestion and a cough. Monday was his first quarterly oncology appointment. Which meant he was out of school for two consecutive days. His classmates were concerned as to whether or not he was OK. Last Tuesday we did a Cancer Class with his classmates. It was an amazing thing to witness. We covered the basics: You can't 'catch' cancer. Having cancer does not mean that you did something wrong. Gregory was sick for a long time, but he is better now. Our fantastic social worker brought along a couple of ports and passed them around for everyone to touchy feely. The kids were fascinated. We talked about G Tubes. Gregory showed of his G Tube site and there was much 'Oooooo'ing and Aaaaaah'ing' with some 'Eww!' and a few 'You have TWO belly buttons!' One kiddo gasped and exclaimed: "Just like Mary!" His little sister had a G Tube as an infant and immediately recognized that Gregory had something in common with his sister. So incredibly touching and cool. At one point, Gregory stood up, held his hands in the air and proceeded with: "Alright. Everybody get in a line and one-at-a-time you can FEEL the line of my port that is in my NECK VEIN!" Several of the kids would not go near it, but many were completely fascinated by it. As strange as this may sound, one kid even said he wanted cancer. Remember, these are first through third graders. Everything that we had been discussing was fascinating and how else to experience all this amazing stuff, than to have the disease that brings it to you?

A friend of mine confided in me that when her son and his dad were walking home from school that day he told his dad: "When I grow up, I want to have a job where I can figure things out. Like cancer."

A conversation was started. These amazing kids allowed a tiny seed to be planted. Who knows what that seed will blossom into, but they have been exposed to something they might not have otherwise experienced. I can imagine, years down the road, they may have a friend with a kiddo diagnosed with cancer and will hopefully remember Gregory and the loving way we brought the world of childhood cancer into their lives.

Did you just call me a Pollyanna? Why, yes. I do resemble that comment. Regardless of how frickin' nasty this Odyssey is, I have this eternal hope that we have touched lives and are making an impact. Does not matter how large it is. Even if people only pause for a moment, they have taken the time to think about something that would not have crossed their lives or minds before.

The other day, Gregory and I were leaving school, as always, hand in hand. A woman and her two kids were walking behind us. Gregory exhaled a big sigh and quietly said: "I love you, Mommy." We eventually were walking side-by-side and out of the blue she blurts: "You must be so grateful that you get to walk your boy to school everyday." Her son knows AnnMarie and apparently we had a conversation at one point over at Starbucks. She had been walking behind us, watching and looking at my tattoo. Her words touched my heart and imprinted on my soul. I said to her: "You have no idea how grateful I am." I am glad that she cannot comprehend my level of gratitude. Although.... she and many other families have taken moments to pause in their own gratitude, while witnessing my gratitude. Gregory is that perfect example of 'Don't sweat the small stuff.' While at the same time reminding you to CHERISH the small stuff.

I'm not sure how long this period of amazement will last, but I'm willing to bet that it won't diminish for me. Every milestone, every day, month and year that we get to have Gregory in our lives is magical. There is no explanation as to why he has survived. There is no 'reason' for his survival. I do not believe that anyone involved with his care did anything special that affected his outcome. Even his bone marrow donor, Katie, was an incredibly LUCKY roll of the dice. So the fact that he is surviving truly is filled with magic. (Admittedly, with a huge portion of science, too.)

As much as I loath the word 'miracle', Gregory's life is miraculous.

With love, magic and wonderment,
MindiTheMagnificent
~Momcologist

First day of school!!!!!!!!!!!

First Going Out. Their Montessori Community Garden.

What can YOU do to support childhood cancer?

Sat, 1 Sep 2012 03:09:26 -0400

Today is Saturday, September 1, 2012. Today begins the fast and furious 30 days of National Childhood Cancer Awareness month in the United States.

We, the childhood cancer community, have been furiously preparing for these brief 30 days. During this 30 day period, we will be advocating our buns off to the public at large.

A few facts:

Childhood cancer is the #1 disease killer of our children in the US.
Every weekday in the United States, 46 children will be diagnosed with cancer.
The ONLY risk fact for childhood cancer is being a child.
Three out of every five children diagnosed with cancer suffer from at least one long-term or late onset side effect.

As you become AWARE of childhood cancer and how it affects our kiddos, families and communities, the question remains:

What can YOU do to support childhood cancer?

For the 30 days of September, here are 30 really easy things you can do to support families like mine, kiddos like our son Gregory and the next 46 families that hear the words: "Your child has cancer."

Know that September is Childhood Cancer Awareness Month and the awareness color is GOLD. Tell your friends. Post a status to Facebook. Shoot out a tweet.
Donate whole blood, platelets, blood products. Our kids need a lot of transfusions to keep them alive.
Find your local chapter of American Childhood Cancer Organization. They support families of kids diagnosed with cancer. List of affiliates here.
Hold a lemonade stand and donate the proceeds to Alex's Lemonade Stand Foundation for Childhood Cancer. Next time you are at Toys R Us, you can also make a donation at the register.
Donate art supplies, new toys, itunes gift cards, gift certificates for local quick serve restaurants, books, bright pillow cases, etc to your local hospital that treats kids.
Hold a bake sale to benefit Cookies For Kids Cancer!
Create A Pepper via Chili's Restaurant online to let people know how to support childhood cancer.
Go EAT at Chili's on September 24th. This day's proceeds benefit St Jude Children's Hospital.
Join People Against Childhood Cancer (PAC2). 'Like' them on Facebook. Keep current on what's happening in the childhood cancer world.
Ever wanted to try being bald? Shave your noggin and raise fund for life saving research via St Baldrick's Foundation. The largest private funder of childhood cancer research in the US.
Sign the petition at The Truth 365, demanding that the National Cancer Institute allocate more than a mere 4% to childhood cancer research.
Know where your donations are spent when supporting the 'big' cancer foundations. You will be surprised.
Find a Childhood Cancer Awareness Event in YOUR area and GO! Check it out, meet amazing people and be inspired. Don't have one in your area? Put something together. Big or small. Does not matter.
Interested in politics? Get to know Kids V Cancer. 'Like' them on Facebook. Some amazing things have already happened and there is more to do.
Your local Ronald McDonald House needs toiletries, groceries, cleaning supplies and kitchen basics. During your next Costco trip, pick up a box or two and drop it by.
Are you an athlete or aspire to exercise more? Run for kids with cancer with Rally Foundation!
Sponsor a pair of Peach's Neet Feet for a childhood cancer kiddo. THE grooviest kicks anywhere! Don't forget to 'like' them on Facebook, too. Madison and her team will blow you away with their heArt.
Get yourself the hippest Fedora you've ever seen. Proceeds benefit St Baldrick's Foundation.
Get to know 46 Mommas Shave for The Brave. Make a donation to support their $1 Million goal.
Support the silent and often left behind SuperSibs during Sibtember.
Decided to hold your own event? Fabulous! Contact PAC2 at: info@peopleagainstchildhoodcancer.org and get that event on THE MAP!
In memory of the children who have died, take a moment and reach out to a friend who has lost a child. Does not matter the nature of the death. Speak their child's name, share a memory and REMEMBER that their child LIVED.
Take the B+ Foundation's survey and find out how much you really know about childhood cancer.
Know the facts about childhood cancer.
Understand that survivors face their own unique post treatment issues. One is never 'done' with childhood cancer.
Wear a GOLD ribbon. Share what it represents.
Donate airline mileage points to Make-A-Wish.
Get swabbed. Save a life. YOU could be a potential bone marrow match for a kiddo's family desperately waiting for a glimmer of hope.
Know someone in treatment? Mow a lawn, provide a meal, do some laundry, offer to take care of a sibling, reach out. Make a phone call, send an email, drop a text. They are isolated and it hurts.
Share this list. Far and wide. We, the childhood cancer community, will not quit. Cancer doesn't care, cancer doesn't discriminate. Remember: The only risk for childhood cancer is being a kid.

Loving every last one of you. Fiercely. *RAWR*

In honor, in memory, in defense.

MindiTheMagnificent

~Momcologist

To quote St Baldrick's Foundation: