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

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. 

I NEVER want to forget that belly laugh.

Covering you in love,
MindiTheMagnificent
~Momcologist

Healing deep wounds.

Sister, Sis, Sissy, AnnMarie~

Hello, darling. It's late at night, on a Monday in November, 2012. You are slumbering away, in what I hope, are sweet and peace filled dreams. I am just now, finding space in my heart to devote words, now and again, to nothing but you. I had intended on writing to you in this fashion, from the time that you were born. I originally started with old fashioned pen and paper. That was so very short lived. I have a tendency to freeze on paper. Life became busy, Gregory arrived and live became chaotic.

Then in February, just two weeks after your seventh birthday, Gregory was diagnosed with cancer. This you already know and feel oh so acutely. It was at this point that I all but abandoned you. My physical and emotional presence in your life ceased to exist, for quite some time. It is now nearly four years since then and I am just now trying to find my way back to you. It's not been easy.

Over the years, I am hopeful that we will be able to have frank conversations about what has passed and how it still affects our relationship and the woman you will one day become. I struggle with connecting with you. You need and deserve so much more than I find myself able to offer to you. I struggle with being the mom you want me to be and being the mom that I am. I sometimes feel like I fall so terribly short in your expectations.

You have a gigantic heart and free flowing, lofty dreams. I want to feed your heart and soul, but still keep you a bit grounded. There is plenty of my own baggage that comes along for the ride in our interactions. I want you to be a woman who is strong, confident, independent, loving, open, practical, with a touch of big dreams. Someone who not only follows her heart, but listens to it in the quiet moments. A woman who is not afraid to look herself in the mirror and say to her reflection: "I love you."

I wonder how the last four years have hindered that development. I wonder how I can show you that I love you. I wonder how I can offer you the security that you so desperately seek. Seven years old is such a tender age to be abandoned by your mother. It is such a young age to have your touchstone yanked from your life. Especially in a situation that pulls her to focusing 100% on your little brother.

At the risk of sounding harsh and unfeeling, I will tell you this: It was the only choice I could make. Given the same circumstance to repeat, I'd make the same choice. Even with the knowledge of hind-sight. Harsh, I know. It was not a choice that I had to ponder, either. It was visceral and innate. Gregory was facing death. You were alive and healthy. You had Daddy, Nana and Papa. Not to mention our extended Montessori community. While they are not a replacement for your mom, they were there for you in ways I could not be.

My heart and my head reasoned it through. It was better for our family for me to focus 100% on Gregory for a short time. Offering him the BEST opportunity to survive and recover. Versus a lifetime of the four of us living without him. It may not have been logical. I would like to think that my singularly focused attention to Gregory did help in his survival. The truth is, I don't know. I'm beginning to think that this way of thinking was my way of bargaining and appeasing my own guilt at having to leave you. Pleading with The Universe that if I sacrifice my relationship with you and Curtis, then we might get a chance to keep Gregory a little longer. I don't know, sweetheart. I can't look back with regret or question the decision that were made. In fact, I don't.

My biggest overriding feeling when it comes to you, is an ache tinged with grief over what we missed out on together. Half of first grade, all of second grade,a large part of third grade, most of fourth grade and now, you are in the fifth grade and I am beginning to find my way back to you.

I'm hopeful that by writing to you like this, I will also be able to talk to you now. I'm hopeful that it will enable me to be a stronger presence in your current moments. I cannot undo the past. Yet it is there between us. I can only support you now and be there for you when your heart crosses places that hurt.

When I pictured my family, I had always imagined having just one daughter. You. You are that one daughter I always wished for. Today, I only wish that the years had been easier for us. They weren't, though. We were handed this really crappy and hateful thing called childhood cancer. You suffered right along with Gregory. You and I will get through this.

Five minutes at a time.

I love you, young lady. With the fire of a million burning suns.
~Mommy

Your seventh birthday. February 5, 2009

Squandering is not an option.

Five slight fingers, a three inch palm. The trust of a child who knows he is loved and secure. My hand wrapped warmly around his soft little hand. Reminding one another that we are OK and we love each other. This bond between Gregory and I is strong and unique.

Gregory had an appointment today to have two of his upper teeth pulled, to make room for his front two adult teeth. The last time he had a procedure at the dentist it did not go very well. I'm hesitant to admit that the dentist actually made me feel a bit small and belittled Gregory a bit. Maybe we were overly sensitive at that point in time. Maybe what we have been through just plain makes us sensitive to certain things. This experience, combined with Gregory's history, contributed to a bit of PTSD today. For both of us.

As Gregory was climbing into the dental chair, the panic, fear and anxiety started to settle in. Thankfully the assistant today was perfection. She did her best to calm Gregory, but I knew he just needed me close. I did what I do best. I climbed right up into that chair, straddled it backwards, stroked his legs and feet, simply offering my presence. As they were applying the nose piece for his 'Happy Gas' I could see thoughts flit across his face. He asked about 'Sleepy Medicine'. Having been sedated only three weeks prior, things were awfully close to the surface. We assured him that today he would not need Sleepy Medicine, just Happy Gas to help him relax. Once the nose piece was settled, he started to cry and bravely wiped away his quiet tears. Taking deep breaths to calm himself. At this point there really is not much I could do to help him. I just have to let him work it out. Which he did, though it did linger for the rest of the day.

This patient and compassionate dental assistant was also in the OR on March 25, 2009 when Gregory had his pre-transplant dental work done. He had eight crowns and four caps placed that day. This protective placement of caps was THE BEST thing we could have ever done for Gregory's mouth health. As she was walking us back to the procedure area today, she confessed to having cleaned my teeth when I was small. It was a day of full circle memories.

The Happy Gas kicked in and he started chatting between the ministrations of the dental assistants. The numbing in affect, Dr Dentist arrived and gently removed the two teeth. Long roots and all. It was actually quite amazing to watch him perform the task. He was gentle and firm in the handling of those teeth within Gregory's jaw. After a few minutes it was time for us to go. Gregory picked out his prize and we left the procedure area. We gathered our coats and headed out the door.

Not being too sure about the expiration date on my Tylenol at home, we stopped at the store. As were were walking toward the store, Gregory had his little hand in mine. There was something so startling crystal clear in that moment. His sweet little hand felt to tiny in mine. Tiny, warm and secure. As I looked down at him, I had a wave of 'Don't forget this moment!'. This moment where we were both silently and subconsciously supporting and comforting one another. We were feeling reverberations of shared trauma. His upper lip was terribly numb and he was quietly talking with me about random observations. I couldn't tell you what they were. Only that his tone was very tender. A tone I've only heard him use with me during times of intense emotions. We were both feeling the past and the present.

He feels so very small to me today. I can't help but wonder what races through his mind during times like today. He was so terribly young during active treatment and his immediate recovery. So young to have to experience what he had to endure in order to have a chance at survival. Those memories and feelings lie dormant. Too young to process them and too young to really remember the details. Yet........ some part of him remembers. I witnessed it happen today, clear as day. So I continue to be his touchstone. The one to keep him grounded and secure.

What he doesn't realize is that he does that for me, too. If I begin to have a moment of selfish, silly anger, judgement, jealousy, pity or you name it, I spend a millisecond holding the wonderment of his survival in my mind's eye and nothing else matters. At this moment he is sleeping beside me. He still does not sleep alone. He will only fall asleep with me at his side. Selfishly, I'm not ready to give up this little luxury. There will come a day when he will not want to sleep next to his Mommy. Probably about the same time he quits calling me 'Mommy'.

For now, I will take what is offered and try to engrave these moments into my rememory. The little hand in mine, the cuddling next to me, the wanting to be close together, the sweet kisses and perfect squeezes. These things have been hard won. I'm not about to squander what's right in front of me.

Crying, AGAIN and thankful.
~MindiTheMagnificent
Momcologist

Tight in a bud.

I don't know how to talk to you. Should I be defensive, offensive or simply open. Aggressive, respectful, loving. I don't know and it's killing me, a little bit, everyday.

I want to be angry. I want to rant and rave. Spew words that have been trapped for entirely too long. Open my chest and fling this heart at your feet. It is so broken. It is tired. It needs a break and it needs to grow.

I have been respectful, given you space. I have been patient.

My body can't take it anymore.

You won't let me in. This is what hurts the most.

I'm tired of being the one to bend. The walking on eggshells. Being left to wonder 'what's next' from moment to moment, day after day, week after week.......

I'm ready to plan for tomorrow. I'm ready to think about next month. I'm ready to consider next year.

I'm growing. I'm healing.

I'll always be a bit broken. I'll always live out loud. I'll always need to be loved and know that I am loved. I'll always ask for more. I'll always question everything. I'll always plan for the worst, but expect the best. I'll always see the best in people. I'll always avoid conflict. I'll always live in love.

The day is not here, but it is quickly approaching.

"The day came when the risk to remain tight in a bud was more painful

than the risk it took to blossom." ~Anais Nin

Comments are closed.
~MindiTheMagnirficent
Momcologist

Drive-by

Super quick Friday Night Drive-by.

AnnMarie has her craft fair tomorrow. she is putting the finishing touches on her items, creating signs and preparing a bit for work to keep her occupied while at her table. She has a friend staying the night and she will sit with her all day tomorrow to keep her company. THAT is a great friend.

Looks like Gregory will finally get his much asked for Red Wallaby this weekend.

For kicks and grins, I leave you with animated OffSpring. Yes, we are pretty much goofy all the time.




Take a moment or two this weekend to show someone you love them. You never know.

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

Bullets. The only kind I love.

It's been a long, full and emotionally taxing day. What does that mean for YOU??

The simplicity of bullet points.

• Gregory had a fabulous day at school today, although quite ravenous. Illness, be gone!
• AnnMarie is frantically getting ready to sell her wares at a Vendor/Craft Fair at her school on Saturday. Need some new jewelry? Drop by Jefferson Elementary between 9am & 4pm.
• We decided today that she will have a St Baldrick's donation bucket at her table! 
• Curtis is navigating relationships with the opposite gender and has willingly and thankfully listened to what I might have to say to help him out. Ye gads, he's a keeper! 
• Washington State has passed a measure for Marriage Equality! *squee*
• I register for school in the morning. Seeking my BSN so I can work bedside with kiddos and their families. (see how I snuck that one in there)
• We had our first snowfall for the season today and Gregory was beside himself with glee. That kid is LIVING life.
• Once again, essentials oils make it all better. Love me some Two-Sisters Apothecary
• I've happily fallen down the rabbit hole that is Heritage Makers. 'bout damn time I started doing something with all my digital images! Flickr really could care less about the people I love.
• The fact that I need a wardrobe over-haul became a bone of contention today. Someday. 
• People are good. People are loving. People remember you. 

"A bell's not a bell 'til you ring it, A song's not a song 'til you sing it, Love in your heart wasn't put there to stay, Love isn't love 'til you give it away!" ~Oscar Hammerstein II

I'm off to find Dreamland. Catch ya on the flip side.

In honor, in memory, in defense.

MindiTheMagnificent

~Momcologist 

How's The Greginator?

It's been ages since I have done a proper update on Gregory. Shall we begin??

To say that Gregory has been thriving would be a severe understatement. He started first grade this past September and has not looked back. His state of heal continues to flourish, while I still hold my breath.

He had his first quarterly oncology appointment in September. We met with his endocrinologist and discussed what was next in terms of his adrenal function. His oncology appointment was uneventful. Which is a fabulous thing. Through endocrinology we scheduled an ACTH stimulation test to check the function of his adrenal glands. He had been tolerating daily living without hydrocortisone supplementation, yet we were not sure how his adrenals would function when put under stress. ie, illness or injury

We went in on Monday, October 15 and he was given a drug through his port that would replicate a stress situation. Prior to, a blood sample was drawn to measure his 'normal' level. At the thirty minute mark, another sample was drawn to determine his response. Results came in the next day and they were down right perfect. Baseline was 4 and post infusion it went up to 21. Perfect response. Which indicated that his adrenal glands had returned to fully functional. A-may-zing. Seriously.

Also? This was THE LAST time that Gregory would be accessed through the port in his chest. The last.

We had the OK from oncology to get that puppy out. By a stroke of coincidence, there was an opening the morning of Monday, October 22nd. If you had not already known by now, Gregory is now port free. Completely device free, actually. Since he has a paradoxical reaction to Versed, they simply sent him off to dreamland via gas, then placed an IV in his hand for the procedure. It did not take long and Dr McCarthy was able to get the line out in it's entirety. She did a fabulous job of closing the incision and even excised the scar from the original placement before closing it up. It is healing beautifully and hopefully he will only have a slim, roughly 1 1/2" line of a scar. Thank you to the GVHD gods that there has been zero evidence of GVHD.

He stayed home on Tuesday for pain management and was off to school on Wednesday with his port in a container to show his classmates. Once again, they all thought it was pretty slick.

We have been chipping away at getting his re-immunizations finished. He only has three remaining, yet two of them I am quite scarred of how his body will react. On Friday, November 16, he will receive Varicella, MMR and Menactra. Yep. Two live virus vaccines. Holy crap. Honestly did not think we would get to give these a try. Crossing my fingers that he will have a mild reaction and bowing to all that is sacred that they actually take and give him sufficient coverage for immunity. Please, please, please........

You are going to love this one. A few weeks back, he lost BOTH of his top front teeth. On time. Developmentally on time. We are still not sure how his adult teeth will look when they fully arrive, so we are monitoring them like crazy. We do know that he does not have enough room and the neighbors to his lost baby teeth will be removed by the dentist this coming Monday the 12th.

Too stinkin' cute, if you ask me.

It has been fascinating to watch Gregory 'reclaim' his body. It's not conscience and so very subtle, but there has been a difference in him. A quiet pride, if you will. He is taking on a bit of age appropriate independence, but it has such an air of confidence. As if he is wearing a huge badge that exclaims: "I GOT THIS!" Which today, in this moment, he totally does.

Yesterday when I pick him up he had a bit of laryngitis. This combined with his demeanor let me know that he was working on something. He was uber compliant and lovingly did everything I has asked him to do. Not 100% completely normal behavior! He started to develop a cough and close to bedtime it took on that barking sound that comes with croup. My sensors went into high-gear. Thermometer, Vicks and rest. Thankfully he slept soundly through the night, stayed home today and it did not worsen. In fact, he will be going to school tomorrow. These days, his body is showing us that he is OK. His spirit is showing us that he is fabulous.

I take each new development with cautious optimism. Preparing for the worst and expecting the best. I made the phone call today to oncology to find out what his 'illness protocol' is, now that he does not have a port. The return phone call was both a surprise and an expected response. The verdict?

TREAT HIM LIKE THE OTHER OFFSPRING.

Meaning, if he has an illness, treat it from home. Which means he can have Tylenol again! If I am concerned about an illness, take him to his PEDIATRICIAN. If there is something after-hours and requires an ER visit, I don't have to call oncology first. Yep. We just cut a huge slice out of his medical routine. This will require a mental adjustment from me. The first time we get to test this, I will panic a bit. So will his pediatricians office, but I am well prepared for that scenario. His last round of immunizations was kind of a mess and I learned a lesson. I will forever be Gregory's Living, Walking, Talking Medical Record. *sigh* I will tell you that he is excited to have an excuse to visit our new Pediatric ER. It is due to open soon and the crazy kid wants to try it out. 'Cause, "Mommy, won't it be so much better and easier?"

In December he has a full eye exam, hearing test and oncology. Possibly another round of immunizations, too. I feel like there is something else, too, but I can't seem to put my finger on what it could be. Maybe it's nothing. I only think it's something because it doesn't feel like there is enough.

What did I tell you. He is doing so well, today. I am taking it with such gladness, awe and wonderment.

Today? Gregory is grrrrrrrreat!
MindiTheMagnificent
~Momcologist

Can't do it without you.

NaBloPoMo ~ If you were President of the United States, what would be your first act in office?

Ha! Can you imagine? 

My first act? Pinch myself. Not my scene, thankyouverymuch. As hard as it is, I prefer the grassroots stuff. Not necessarily the underdog, but the community building and working together stuff. Ya know, like St Baldrick's Foundation! 

There is something I need you to do. I need you to click this link over at St Baldrick's and read about the Federal Budget Sequester and how it will affect TODAY'S kids that have been diagnosed with cancer and the research that is conducted through the over 200 Children's Oncology Group (COG) hospitals across the United States. There is an action step for you to do. Please. They need your help. Gregory is at a significant risk for a secondary cancer, he  potentially could need your help, too.

What? You say Chuck Norris is weighing in on childhood cancer?? Yep. Check it! 

• "Though research in pediatric cancer has historically been underfunded, pediatric cancer investigators have been on the cutting edge of cancer treatments and cures for decades. In addition, many of the principles of therapy used in treating adults with cancer were first tested and developed at the pediatric level.
  Yet pediatric cancer investigators must spend a great portion of their time sniffing out funding for their projects, which takes them away from the research lab."

Not sure what I think about this, yet, but it sounds truly promising for our kiddos that do survive and wish to have children of their own someday. Before you get too worked up, please have a basic understanding about stem cells. These are NOT embryonic stem cells. 

The holidays are quickly approaching and I know several families that choose to make charitable donations in lieu of gifts. If that is something you do, or if you simply would like to make a donation to fund life saving childhood cancer research, I am still asking for donations on my bald noggin for St Baldrick's. 'Cause hair grows back. Kids don't. My donation page is here. 

Jason Winston George and I, post shave.

46 Mommas Shave For The Brave

July 29, 2012 ~ Hollywood, CA

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

Corners of my heart.

Nablopomo ~  What are your thoughts about tomorrow's election in the United States?

Today's writing prompt. Yeah. I know. I seriously considered leaving a blank page. I'm not about to go into my political views. Suffice it to say, I cling to the idea of LOVE. *sigh* Wouldn't that be a fabulous platform?

********************************

On the drive home from school today, Curtis was sharing that he was sad. Sad because a friend of his was sad and there was little he could do to help her. This type of sadness is a prominent theme in my life.

I am part of a very rich and diverse community of families affected by childhood cancer. The statistic is: 1 in 5 kids diagnosed with cancer will not survive. Frankly, I believe that stat to be higher. To expand on this: I have roughly 1,200 FaceBook friends. I would conservatively estimate that 75% of them are childhood cancer families. Which gives us a figure of 900 to start with. 1 in 5 is 20%. 20% of 900 is 180. I have statistically 180 FB friends who's children have died. Frightening figure. Which means I have 180 friends who grieve, daily.

I was listening to my playlist the other day and Train's, When I Look To The Sky came on.

The lyrics triggered thoughts of my friends. How it is to live a life without your child. To live a life after witnessing the cruel death of your child. To muscle through constant triggers, wonder over missed milestones, question if they 'did everything they could'........ living with the tender soreness of grief.

I can't 'DO' anything for these parents I love so deeply. I only witness and offer love. They are as much a part of my daily life as Gregory is. I cannot look at his surviving self and not see the kids who are gone. I remember them, I speak their names, I carry them in my heart. 

Donna, Ryan, Julian, Rhema, Cole, David, Mason, Max, Tyler, Kamran, AJ, Michael, Nikki, Braeden, Anjali, Keeghan, Aidan, Kendall, Cameron, Christopher, Jack, Hope, Dylan, Davey, Jessica, Mia, Rayley, Nayelis, Terria, Cameron, Bobby, Jordan, Ethan, Ashley, Anna, William, Isaiah, JJ, Parker, Kelsie, Jiselle, Javeth, Callie, Arden, Ronan, Chase, Auston, Bryce, Elizabeth, Corey, Drake, Matthew, Cory, Stephanie, Landyn, Reid, Delaney, Declan, Jessica, Katie Ann, Layla, Armstrong, Caleb, Nicky, Brandon, Isaac, Gregory, Oliver, Ellie, Travis, Tyler, Katelyn, Salvatore, Makiah, Nick, Delaney, Elizabeth, Timmy, Shea, 

The names go on and on. They all occupy a piece of my life. 

In honor, in MEMORY, in defense.
~MindiTheMagnificnet
Momcologist

These Are Days

Goofy Saturday Mornings

Quiet Moments before Giant Moments

Buh-Bye! Three years, seven months, twenty-six days.

Gregory had his port removed Monday, October 22, 2012. It happened in quite a whirlwind of last minute happenings. On Monday, the 15th, he had a test to check his adrenal function. His bodies ability to produce stress hormones. Results came back on Tuesday and he blew the test out of the park. Completely NORMAL stress hormone production. Which means no replacement hydrocortisone or stress dosing.

We had the go-ahead to get his DEPORTATION scheduled. Talked with they surgeons office on Thursday and they had an opening for the following Monday. Just like that. Lickety-split.

Don't let the swift circumstances fool you into believing this was a last minute decision. Doc started this conversation back in May and it has taken all this time for me to completely embrace Gregory being port/central line free. It's almost like a security blanket. As long as he has it in place, should anything happen, we can act fast. It's removal forces me to surrender to the next phase of his health. Survivorship, development, milestones...... while still holding my breath. Keeping a look out for delayed development, late effects, subtle signs that something might be off.

While loading Gregory into the car after his surgery, the panic hit me. Along with a healthy dose of PTSD. My heart sunk through the floor of my pelvis, my heart rate zoomed, my breathing became quick and shallow. I felt light headed and my vision became extremely clear. This was it, there was no going back. Port has left Gregory's building. No safety net. I have to build an internal safety net. It's coming along. It will never be truly secure, but I hope the strength of the fibers and the holes improve with time. 

Gregory gleefully took his port to school to show his classmates on Wednesday and AnnMarie took it on Friday. Pretty fascinating stuff. 

These days have moments of fear, anxiety and grief. Mostly? These Are Days to remember. 

In honor, in memory, in defense. Still basking in Awe & Wonderment.

~MindiTheMagnificent

Momcologist

Picture Perfect?

Totally phoning it in today. Still figuring out the collage feature, this will have to do.

October Highlights

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

Working THROUGH the kinks.

NaBloPoMo ~ If you could live anywhere, where would it be?

Digging my heels in over here. I have a strange relationship with dreams. They have been pretty non-existent for the last several years. This is one of those questions that can be easily answered if one has room in their life to dream or for someone who's dreams have not been beaten down year after year.

Odd as this may sound, I don't have big dreams for myself. Nor do I have big dreams for The OffSpring. I have simple expectations, with fervent preparations for any alternatives that may come about. I expect moments of joy, togetherness, a roof over our heads, food in our belly, love, community, enough suffering to keep us balanced..... Catch my drift?

There's that saying: "No matter where you go, there you are." No matter where I live, it will still be me living there. Changing my address or dreaming of a different one won't change how I live. If I could live anywhere, I would live BETTER where I already live. My heart would be less broken and more loved.

******

OK. OK. OK. This is so not working for me. It's not flowing and I'm forcing it. I let it marinate in my brain for several hours and I'm coming up dry. Why? 'Cause this is not the type of navel gazing I find much value in. Also, there are several things about how I am currently living that I have too much anger and sadness about. I cannot dream of something better, when what I really hunger for is for my current home to actually feel like a home.

I was not too sure how writing prompts would work for me. I have not quit. I'm simply acknowledging that I am not feeling this one. Saturday and Sunday are 'free' writing days. I'll get back on the proverbial 'prompt' horse on Monday.

Wish I could have given you more, but this is all I've got. 'til tomorrow.....

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

Blood Letting

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?

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

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.

Letter to Fellow A101 Families

At the beginning of every school year, I compose a letter to Gregory's fellow classmates. I do it for two reasons. There are illnesses that we need to avoid and we are better able to treat with awareness. I need to know what is going around the classroom. I also feel the need to let the families know what kind of language and topics might be coming home with their kiddos. For posterity and informational purposes, I have decided to share this year's letter. 

Loving you all,
MindiTheMagnificent
~Momcologist
In honor, in memory, in defense.

Hi friends and fellow Montessori families!

This might seem a bit strange to hear from an individual family, but keep reading and it will all make sense.

Gregory Bibb is an incoming first grader in Mrs Waner's class. He is my youngest child. For those that don't know us, we have three kiddos. All of which are Montessori kids. Curtis is an eighth grader at Sacajawea and AnnMarie is a fifth grader in Ms Schmidt's class. 

Gregory is a childhood cancer survivor. In February of 2009, he was diagnosed with Juvenile Myelomonocytic Leukemia. His only treatment option was a bone marrow transplant. In June of 2009 he received his precious gift of new marrow from an anonymous donor. Gregory currently has no evidence of his original disease and is now living with marrow that also belongs to someone else. Crazy science, huh?

He is now three years post bone marrow transplant and just now starting a solid path of much better health. Without getting into too many details, his treatment and recovery are a very grueling and arduous process. 

There are two main reasons I am writing to share this information with you. The first is for your families comfort level. Gregory is not shy about sharing his story and experiences. He may have been three at diagnosis, but this is all that he has known and is simply a part of who he is. He is not shy about showing his battle wounds and equipment. He has scars from three central lines, a scar from a G Tube in his belly and currently still has a port in his chest for IV access. Your kids may come home with strange words and I wanted you all to have a heads up. I am ALWAYS available to help navigate these discussions, too. If they come to you with questions and you are not sure how to respond, please know that I am a phone call, text or email away. The word CANCER strikes fear in the hearts of us adults. Most kids have not learned to fear this word, yet, and if the come home talking about a fellow classmate and cancer, I wanted you all to be prepared.

My second reason: Your immune system is produced mainly in your marrow. Gregory has a brand new immune system. Which means he is more susceptible to illnesses. He has been well isolated for the last three years, but it's time for him to move onto this stage of his Odyssey, which includes all the germs that come from a public school. We are prepared as best we can be, but I need a favor from you. Run of the mill colds are no big deal. IF your family has Chicken Pox, Pertussis or the flu it is important for me to know. Chances are, by the time you know, Gregory has already been exposed. Which is totally OK. If Gregory does get sick, it is better for him and his treatment, if we know what we are facing. Also, if there is something like this confirmed in the classroom, Gregory will not be attending school until risk of exposure has passed. 

Are you still with me??  I am hopeful that all this will be for naught and Gregory will cruise through this new beginning in his life. Yet, the reality is that illness can really effect his body and it's important for his care for me to know what is going around. Please know that this is MY burden. Of this I am aware and deeply respect. I am an open book when it comes to this experience. Should you have any thoughts or questions, please do not hesitate to ask them. Ever. One of my favorite quotes perfectly embodies Gregory's diagnosis of cancer: "We may not live in the past, but the past lives in us." ~Samuel Pisar, Holocaust Survivor

Looking at Gregory you would NEVER know what he has been through, what his current issues are or what he may face in the future. He is so stinking excited to start school and spend time with your kiddos. Thanks for reading through this and taking it to heart. We have been part of the Montessori community for eleven years now and I am constantly grateful to be surrounded with your families.

With a love filled heart,

Mindi Finch

In honor, in memory, in defense....
Momcologist & Class of '11 46 Momma

What can YOU do to support childhood cancer?

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."

1. 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.
2. Donate whole blood, platelets, blood products. Our kids need a lot of transfusions to keep them alive. 
3. Find your local chapter of American Childhood Cancer Organization. They support families of kids diagnosed with cancer. List of affiliates here.
4. 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.
5. 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. 
6. Hold a bake sale to benefit Cookies For Kids Cancer! 
7. Create A Pepper via Chili's Restaurant online to let people know how to support childhood cancer. 
8. Go EAT at Chili's on September 24th. This day's proceeds benefit St Jude Children's Hospital.
9. Join People Against Childhood Cancer (PAC2). 'Like' them on Facebook. Keep current on what's happening in the childhood cancer world. 
10. 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. 
11. Sign the petition at The Truth 365, demanding that the National Cancer Institute allocate more than a mere 4% to childhood cancer research.
12. Know where your donations are spent when supporting the 'big' cancer foundations. You will be surprised. 
13. 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. 
14. 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. 
15. 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.
16. Are you an athlete or aspire to exercise more? Run for kids with cancer with Rally Foundation!
17. 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.
18. Get yourself the hippest Fedora you've ever seen. Proceeds benefit St Baldrick's Foundation.
19. Get to know 46 Mommas Shave for The Brave. Make a donation to support their $1 Million goal.
20. Support the silent and often left behind SuperSibs during Sibtember. 
21. Decided to hold your own event? Fabulous! Contact PAC2 at: info@peopleagainstchildhoodcancer.org and get that event on THE MAP! 
22. 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.
23. Take the B+ Foundation's survey and find out how much you really know about childhood cancer. 
24. Know the facts about childhood cancer. 
25. Understand that survivors face their own unique post treatment issues. One is never 'done' with childhood cancer. 
26. Wear a GOLD ribbon. Share what it represents. 
27. Donate airline mileage points to Make-A-Wish.
28. 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.
29. 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.
30. 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: 

Beginning to break my silence.

The pull to the keyboard is ferocious. I find myself sitting before this screen constantly. Then I loose focus. My thoughts clamor for attention. "Get me out! Turn me into black and white type!" I am desperately trying to commit to sitting here, frequently, until I can find some order in my thoughts.

Writing through Gregory's transplant and his two years or so of healing was a focused Odyssey. My brain was singularly focused. I now have room to ponder topics other than Gregory and his acute state of health.

I'm committed to getting it out. Regardless of how it sounds or how scrambled my thoughts are. I am at a point where I am, once again, redefining my voice. Currently it's confused, over stimulated, jumbled. Here's to working through ME. Not just Gregory's experience.

Today I met with Gregory's new teacher. For the last two years, pre-school and kindergarten, he has been safely ensconced in a school community that was small. One where if he missed a truck-load of school, it really was no big deal. He enters first grade in 13 days. Public school. His first real transition to The Real World. Socially, emotionally and academically I am not the least bit concerned. Health wise? I find myself conflicted. Torn between listening to the whispering of my gut that tells me.... "He's ready. He'll be OK." and the reality of blood work, the fact that he has donor marrow and the insecurity of this experience. Germs. Germs have me terrified.

During his annual follow-up in June, we were given the green light to get him re-immunized. Freaking fantastic, right? Yet, until we finish his cycles and I have those titres in my hot little hands, I have zero belief that he is adequately protected. Not to mention that he has a decreased anti-body count. Will it be enough? Will he be able to stay out of the hospital this year? Will he spend weeks out of school avoiding Pertussis, Chicken Pox, Flu?

Then I hear the whisper: "He's ready. He'll be OK." Quickly, behind the whisper, sneaks in a reminder that right now, in this moment, we are NOT in cold/flu season. I begin to doubt. I know too much. I don't know enough. Don't even suggest that I need to have FAITH. That does not help with my insecurity. Faith is not science and that is my current belief system when it comes to Gregory's health.

Yet, shining so bright above all of these worries and unknowns, is the pure and simple fact: Gregory is entering public school. On time. With his brain intact.

Today, AnnMarie, Gregory and I were cruising along down the road. Gregory's Hero Beads hang off my rear-view mirror. He could care less about them and I cherish them. They are my Talisman, my rosary. Every once in a while we go through them and talk about them while going down the road. Today Gregory was interested in the Balloons Bead. When a kiddo has treatment on their birthday, they get a little brass charm of three balloons. Gregory has three of them, representing his fourth, fifth and sixth birthday. The kids commented that he didn't  get one for his seventh birthday and isn't that a bummer. My response turned it around.... Isn't it AWESOME that he didn't get one for his seventh birthday!?!?! Much agreement was had and AnnMarie exclaims: "We didn't think you'd even MAKE it to your seventh birthday!"

*stab*

Gregory: "What do you mean, you didn't think I'd make it to my seventh birthday."
Me: "Well, your cancer was really bad and the treatment for it is really bad, too. The fact that you survived it all is pretty spectacular."

So there it is. This reality that we live with. So freaking grateful for today, so freaking terrified of yesterday and zero security in tomorrow. Trying to embrace tomorrow's uncertainty. Not doing a very good job of it. I am a planner by nature and I still feel like I can't plan a damn thing beyond the next five minutes. I never make promises or commitments. There are plenty of, "I'll try" and "We'll see". I don't want to disappoint anyone. Especially the siblings. I feel frozen in time. Suspended in reality, just waiting with bated breath. Is this really going to happen? Knowing that, as school begins, the frequency of having to say this is going to increase. School activities, time with friends, invitations to events. I KNOW that nothing is guaranteed, I KNOW that. I am just so sick and tired of living in suspended animation. Not just for me, but for Curtis and AnnMarie. Damn it. They deserve a piece of normality, too. They are aging every day and time is slipping away.

I have hopes that this year is going to be a 'turning' point for Gregory's health. I have hopes that he is done with late-effects. I have hopes that he will maintain his status quo. What is hope, though? "Hope is the thing with feathers....." I know too much. I don't know enough.

Yes, although we have skirted death and severe late-effects, I am still filled with fear, anxiety and anger.

While equally filled with gratitude, love and wonder.

THIS is what survivorship looks like. THIS is why I still advocate. THIS is why I still fundraise. THIS is why I soapbox, shave my head, tattoo my body, network and yes, THIS is why I still need to write. Survivorship is not death, but it is hard. In it's unique way.

We are mysteriously lucky. I get to wake up to THIS.






In honor, in memory, in defense,
MindiTheMagnificent
~Momcologist



FaceBook conversation HERE.

Katie Saves Gregory

I've been hoarding these moments and memories. Knowing, with such a certainty, that I cannot do the evening justice. Knowing that these black and white words cannot even begin to convey what my heart felt that night. In the spirit of posterity, I will try my best. With the understanding that my heart is so much bigger than these letters......

April 26, 2012. The night we met Gregory's life saving bone marrow donor, Katie.

I have to tell you, getting all four of us duded up for an evening of red carpet celebrity was far easier than I had anticipated. There was a giddiness and restrained excitement as we all gussied up for our evening in Manhattan.

Curtis was perfection as he worked through all the goodies that come with a tuxedo. Tie, cumber-bun, cuff links, those tiny tux shirt studs and squeaky shoes. He does not own anything but white socks. Guess who forgot to think about picking up a pair of dark socks? Yep. White sport socks for the evening. Earlier in the week he found a black Trilby style hat and donned that for the evening, too. Oh my, he was so proud in his skin. Have not seen him strut like that, ever. Just watching him filled my heart.

AnnMarie was BESIDE herself to get into her own gown. My mom made her gown for her, custom to her taste and fit. A fluffy underskirt, a bit of make-up, special jewelry and handbag. She had picked up a fancy shawl/scarf from a street vendor and added that to her ensemble. Her whole demeanor changed, too. Suddenly regal in her finery.

Gregory?? He climbed into his tux with a nonchalant 'Whatever!" attitude. He would have been just as happy to go dressed in his fleece pants and a t-shirt. His tux fitting was a bit challenging. He is so tiny. The smallest tuxedo jacket was the only one that would fit his trunk. They lengthened the sleeves out as far as they could and the were still a bit short. The length of the jacket was a little short. Yet it did not matter. His Peach's Neet Feet went on and he was set. Except.... he was not ready until he had a little something to carry. While at Toys R Us, earlier in the day, he had picked out a Mario Bros question mark yellow cube, filled with candy. He filled it with Ritz crackers, in case he needed a snack, and that completed his look.

Myself? Well. Suffice it to say, formal gowns are only worn on special occasions and this was THE special occasion. I only hope I get an opportunity to wear it again. A humble 'thank you' to Deena, owner of Finders Keepers, for making me feel beautiful.

Photo Courtesy BFANYC.

One of the only decent image I have of Curtis.

We were all ready at precisely the right time. We went down to the lobby of our hotel and met our 'handler', Alina, from DKMS. There was a car waiting at the curb to take us on a ride through old Manhattan, at dusk.  It was surreal. It was a weekday, so there was still quite a bit of traffic. We wound through narrow streets, surrounded by towering concrete buildings that were built when this city was founded by the financial moguls of the time. Concrete pillars, stairs and sharp cornered facades. Of course the OffSpring had no idea what they were looking at, but I was in awe of the history that we were cruising through. I will return to Manhattan. I would like to spend days wandering through that amazing island. As we started to get closer to Cipriani Wall Street, there was a line up of town cars, limos and black SUVs. Meanwhile, Alina was texting like crazy with Katie's handler, Alex. In order to keep our meet moment a true surprise, we had to ensure that our paths would not cross. If Gregory had been an adult recipient, it would not have been as much of a challenge. Considering that we were the only party with kids, it would have been obvious to her who we were. We wound our way through the street and arrived at what I think was the back entrance. We did not get to walk the red carpet, in hind-sight it makes complete sense. Can't be flashy before we meet! We gathered in a corner of the venue and waited for the festivities to begin. We had a chance to meet a few of the DKMS employees, but it is a bit of a blur. My mind and heart were on other things. Gregory played 'peek a boo' with several of them around the giant Roman columns, Curtis hung out along the wall and AnnMarie beamed while chatting with everyone.

Once we were seated, the evening began. I can't tell you the exact occurrence of events, but Nate Burkus took the stage and the butterflies began in earnest. Awards were given, Heidi Klum was a recipient. One of my personal highlights was Dr Fred Appelbaum. He was chosen to speak on the medical aspect of bone marrow donation. He is the Director of Clinical Research for Fred Hutchinson Cancer Research Center, of which Seattle Cancer Care Alliance  (SCCA) is the treatment arm. Gregory's own bone marrow transplant treatment center. Quickly our time to go on stage approached. In February, Seven2 and ILF Media came to our home and did some video Q&A with us. They put together an amazing video to show at the event, just prior to our meet. This video was shown and the tears started to flow. By now, the people around our table knew who we were. Katharina Harf, Co-founder and Chief Inspiration Officer of DKMS Americas, took the stage and began our introduction. 

Gregory and I went to the stage, up the steps and took out seats. All the while, I have tears streaming. Gregory was blissfully unaware of the gravity of what we were doing. DKMS had thoughtfully placed a bowl of candy for Gregory to munch on while on stage. While Katharina and I exchanged a few words, he looked about, nibbled on gummy candy and Skittles, swinging his feet and 'reading' his cue card. We had a line to give at the end that was a plea for donations and Gregory was to say "Please". I did my part, but Gregory just was not into adding to the plea. Totally OK. 

Then it was time to meet our 25 year old, female, living in the US, anonymous donor.

They had placed Katie, strategically, very far from stage. Katharina called her to the stage, we stood and applauded. And applauded. And applauded. And applauded. It may not have truly been that long, but in the moment it felt like forever. As we applauded, this beautiful spirit, in a royal blue gown came toward us.

First Glimpse. Photo Credit: Sarah Jaye Weiss

Katie came on stage and I fell apart. On came "The Ugly Cry" as I finally got to wrap my arms around this anonymous woman who saved my child's life. This woman, with no children of her own, who had been inspired to potentially save the life of some one else's child. This woman who has lived in my heart and soul for the last three years, while giving LIFE to my youngest. This woman who now shares DNA with Gregory. As I wrapped my arms around her, I realized a little late that she only had eyes for Gregory. Completely understandable. She stepped over to him, knelt down to his level, said hello and looked him right in the eyes. 

So. There you have it. There is more, but it will need to be in a later post. So much more to share. 








Heart a bursting with love....
~MindiTheMagnificent


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