Mother’s Day. Made possible through research.

Mother’s Day is tomorrow.

I get to hug and kiss Gregory tomorrow.

Research has made that possible for us.

Not the case for too many families.

Childhood cancer remains the number one cause of death by disease in our kids.

Help me fund research for tomorrows kids. I am a 46 Momma and I fundraise for St Baldrick’s foundation.

In honor of Mother’s Day I am hold a raffle for a hand knit item. Knit by me. Yes, I am a mad Knitter. For every $5- donated, you will receive an entry into the raffle.

Donations are made to my St Baldrick’s participant page. Simply click on this link —> Mindi Finch ’13

Doesn’t every family deserve moments like this?? Gregory, dancing his hiney off last week.

Gregory will draw a winner 9pm PDT on Mother’s Day.

Every single day; In honor, in memory, in defense.

Posted in Childhood Cancer | 1 Comment

Timeline of Life

This is my seventh year as a Lower El Montessori Mom. Lower El meaning the 6-9 age group, first through third grade. You know spring is approaching when you walk the halls of the classrooms and start to see timelines of life appear on the walls. This year was no different, except it was.

Beginning with the first day of school, every year, the Lower El kids learn about timelines through stories. Stories that explain all different events that make us who we are and how we came to be where we are today. Once the idea is firmly planted, the kids get to bring pictures of themselves to school and write a bit of a story about that time in their life. They can choose any time frame, though typically it’s one for each year of their life. This is the beginning of their Timeline of Life.

Gregory has needed his pictures for quite sometime, now. I have been dreading the act of sitting down with him to pick out one picture from each year of his life. The years he was sick and his body was fighting like hell to keep his organs and his new marrow. Then there are the years before cancer. The emotions attached to those years are weird. Looking back on them I want to feel like I should have had a premonition. I look through those photos looking for signs. Just so you know…… I never find them. There are not any to be found.

At Gregory’s age of 7, I get to fill in the memories from past years. He does remember somethings from more recent years, but anything beyond 3 is pretty much up to me to let him know what was going on. Guess what? I can’t access those memories. Not without a solid representation of something in an image or someone else around me who remembers moments. I look at some of those images before cancer and wonder…. what the hell was going on there! Despite the fact that I can look at any one of Curtis or AnnMare’s  pictures from past years and remember exactly what was going on. Gregory before cancer is a complete blur.

He and I finally sat down and picked out eight pictures last night. His Timeline of Life was inspired by a memory from Christmas. Katie, his bone marrow donor, sent him a telescope for Christmas. He was so freaking excited about it that we immediately put it together and tried it out in the snow. Along with the snapping shutter of my cell phone. This is the memory and image he wanted to build his timeline from. Which translated into finding pictures of Gregory from the month of December, every year that he has been alive.

I am excited to see what Gregory’s timeline will look like and how he will articulate what he remembers and what I have shared with him about the pictures from his younger years. For posterity I have shared the images below along with description of my own. I really should do this with each kid. Alas, I do not have digital images prior to 2002. Curtis would have several years not represented. Still might do it, anyway.

Gregory’s Timeline of Life. Through my eyes.

You spooked me, Ma!

December 2005 – Six months old. Not many pictures for this month and a select few of Gregory.  Seriously. Three OffSpring under the age of 7. Enough said.

More! I want MORE!

December 2006 – 18 months  This kid! He enjoys strong coffee and stout beer! A kid after my own heart.

Clifford, Dragon Tales,

December 2007 – 2 years, 6 months Christmas pajamas and Christmas presents. A PBS programming inspired computer game. Remember those? When our kids actually played on a PC?

How much flour can I get on myself?

December 2008 – 3 years, 6 months              The last December before cancer. Until recently this spot of kitchen counter has been Gregory’s spot. He has LONG been my shadow. Making chocolate chip cookie bars for Santa Clause.

Really? I'm in so much pain, I'll pretend I'm excited.

December 2009 – 4 years, 6 months             Yep. Christmas 2009 Gregory was inpatient. He had just had his G Tube placed. Little did we know that we wouldn’t be comfortable out of the hospital until Valentine’s Day.

Look at me 'write'!

December 2010 – 5 years, 6 months              Our first American Childhood Cancer Organization reunion party. Our first big outing where there was a sense of security. Kid was still on steroids, though.

No! I don't wanna leave!

December 2011 – 6 years, 6 months      Another December in the hospital. This time, outpatient clinic. *whew*
Although, it is another December with very few pictures.

OMGosh! This is so freaking awesome.

December 2012              7 years, 6 months     The telescope. The excitement. The flourishing of a Montessori kid.

Posted in Childhood Cancer | Tagged , , , | 2 Comments

Hoping For Hope

I wish I could show you how this back-to-school thing feels. I wish I could share this feeling with you. Mainline it to your heart. 

My first assignment for my English Comp class was to write a narrative essay inspired by a poem we selected from Poetry 180: A Turning back to poetry. This was my first foray into writing to conventions. Creating a story arc. Ensuring that the language was descriptive. The concept of a thesis. First attempt at MLA. 

I’ve decided to share it. I am incredibly grateful to have an instructor who allows us to revise and receive a new score, once our papers have been initially scored. To me, this means that I get to learn, grow and apply that much more of the concepts. 

First the poem that inspired the narrative essay that follows:

Singing Back the World

I don’t remember how it began.
The singing.  Judy at the wheel
in the middle of Sentimental Journey.
The side of her face glowing.
Her full lips moving.  Beyond her shoulder
the little houses sliding by.
And Geri.  Her frizzy hair tumbling
in the wind wing’s breeze, fumbling
with the words.  All of us singing
as loud as we can. Off key.
Not even a semblance of harmony.
Driving home in a blue Comet singing
I’ll Be Seeing You and Love Is a Rose.
The love songs of war.  The war songs
of love.  Mixing up verses, eras, words.
Songs from stupid musicals.
Coming in strong on the easy refrains.
Straining our middle aged voices
trying to reach impossible notes,
reconstruct forgotten phrases.
Cole Porter’s Anything Goes.
Shamelessly la la la-ing
whole sections.  Forgetting
the rent, the kids, the men,
the other woman.  The sad goodbye.
The whole of childhood.  Forgetting
the lost dog.  Polio.  The grey planes
pregnant with bombs.  Fields
of white headstones.  All of it gone
as we struggle to remember
the words.  One of us picking up
where the others leave off.  Intent
on the song.  Forgetting our bodies,
their pitiful limbs, their heaviness.
Nothing but three throats
beating back the world – Laurie’s
radiation treatments.  The scars
on Christina’s arms.  Kim’s brother.
Molly’s grandfather.  Jane’s sister.
Singing to the telephone poles
skimming by.  Stoplights
blooming green.  The road,
a glassy black river edged
with brilliant gilded weeds.  The car
as immense boat cutting the air
into blue angelic plumes.  Singing
Blue Moon and Paper Moon
and Mack the Knife, and Nobody Knows
the Trouble I’ve Seen.

by Dorianne Lux

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

Hoping For Hope

Earworms. Those bits of music and lyrics that worm their way into your ear, then tunnel through your brain on an endless loop. In the poem “Singing Back the World” by Dorianne Laux, a small group of longtime friends find themselves cruising along a highway. Judy breaks out in music and lyrics. Sentimental Journey Life is indeed a sentimental journey. Through music and lyrics these women rejoice, remember, grieve and forget. A lifetime of emotions, shared and expressed through the primal and visceral medium of music and lyrics. At first mention of an earworm, an annoying little tune immediately jumps into your brain. For the next several moments you can’t get it out of your head. You will eagerly seek out something to break the cycle. What if these mind numbing tunes, normally like nails on a chalkboard, became a salve to your soul? An earworm that becomes a mantra, a touchstone, a glimmer of hope and an affirmation.

2009 was to be my year of change. Obama was sworn into office and change was sweeping the hearts of our nation. I had taken the first fragile steps on my way to significant ch-ch-changes. Little did I know what The Universe had up her sleeve for me. I am mom to three OffSpring.  All my life my only solid goal was to be a mom. My last child arrived June 2005. Upon exiting the womb and finding himself in my arms, the newest of my OffSpring gazed up at me with an expression one might find on an aged Buddhist monk. His body oozed serenity while his eyes sparkled with wisdom. This tiny spirit came to be known as Gregory.

Being the youngest of three OffSpring, Gregory was exposed to and came down with all kinds of respiratory illnesses. AKA: common head colds. Considering how much he was exposed to with two older siblings, I never gave much thought to the frequency or severity of these illnesses. With each illness, fierce fevers would be followed by a week or so of coughing, a runny nose and sneezing. At 20 months old, we did have an unusual five day stay in the hospital when Gregory acquired Rotavirus, a gastrointestinal illness that results in severe dehydration. A few days of gut rest with IV fluids allowed his body to correct itself. So far, so good. When you are a parent you expect to have at least one hospital admit with your kids. I finally had mine with the third kid. Life quickly returned to the crazy, joyous and raucous chaos that we have always embraced.

Enter February 2009. A time that is frozen in my core. Gregory, once again, had a head cold. This time it lingered longer than I was comfortable with and it was joined by two symptoms that struck terror in my heart from his time spent inpatient with Rotavirus. Dehydration and lethargy. After a trip to his pediatrician, an afternoon in the ER and 48 hours in the hospital, I heard the words no parent ever thinks they would hear: “Your child has cancer.” My world was shattered with that brief four word sentence. My wise, light-filled and charming little three year old had cancer and would be enduring a treatment that kills 50% of the people who receive it. Gregory needed a bone marrow transplant. His only hope at survival and he needed it STAT. From this point forward we started livin’ on a prayer.

As we started to endure this process, I wrote, Facebook’d, networked and found the childhood cancer community. Underpinning all this work, grief, fear, anxiety and tiny brilliantly-lit moments of joy, my spirit was echoed through music and lyrics. A sweep of my fingers across the keyboard allowed me to convey how things were in that moment, to family, friends and my expanding childhood cancer community at large. Without revealing the exact thoughts in my brain, I could express, work through and cope with the raging emotions in my heart through a few lines of lyrics.

Gregory treatment progressed and we found ourselves in Seattle, Washington at Seattle Children’s Hospital, beginning the arduous odyssey in an attempt to save his life. The idea of hope has always been a struggle for me. Without consciously acknowledging the idea of hope, my brain tentatively searched for a whisper of a future that included my youngest child. Gregory’s treatment would take him to the brink of death. His body would be pummeled with high-dose chemotherapy over a six day time frame in order to destroy every remaining cell of his existing bone marrow. His leukemia is genetically hard-wired into the DNA of his marrow. Complete annihilation was the goal. Only an infusion of donor bone marrow stem cells offered a glimmer hope that would allow his body and spirit to stay with us for longer than his disease had proclaimed. These dire circumstances forced me to find hope through hoping for hope.

Family and friends, who understandably had no concept of what we were actually enduring, kept insisting that Gregory was going to be all right. It was the only way many could cope with the fears I was facing. Offering a societal platitude that did nothing to assuage my fear and anxiety, yet gave them a tool to confront our reality while protecting their own hearts. This sentiment wormed it’s way through my heart, traveled to my brain and sought out a connection that would link my emotions and my thoughts in a way that would give me permission to hope. This connection revealed itself as an earworm. Every time someone would utter this idea, my head would default to Bob Marley’s lyrics in Three Little Birds: “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.

These hopeful and free words echoed through my brain during every chemo infusion. Through every acceleration in his body temperature. Through every moment when Gregory’s gut rebelled and tried to heave up the non-existent contents of his belly. Through every time I glanced at his shockingly beautiful bald head. Through every spasm of pain that erased the glimmer from his eyes. Through the days, weeks and months that his body rebelled the brutality of our attempt to save his life.

 “Don’t worry ‘bout a thing / ‘cause every little thing gonna be all right”.

Today, we are four years out from that fateful day I heard those bone chilling words: “Your child has cancer” Within this span of time music and lyrics have continuously and faithfully been my boon companion. Like the women in “Singing Back the World” I find  my life filled with solace, joy, remembrance and grief. Through events that bring thoughts, which trigger emotions, earworms have cradled my spirit. Allowing me to cope with the trajectory of my path that The Universe has placed me on. Ironically, every little thing is all right. They are exactly what they are meant to be. As with any traumatic event, I often find  myself slipping into fear and anxiety more frequently than I would like to admit. During those times not only do I let those emotions have their head, but I plunge my catalog of earworms and remind myself: “Don’t worry ‘bout a thing / every little thing gonna be all right.”

 

Works Cited

Bob Marley & The Wailers, “Three Little Birds.” Exodus. Tuff Gong, 1977

Bon Jovi, “Livin’ On a Prayer.” Slippery When Wet. Mercury Records, 1986

Bowie, David. “Changes.” Hunky Dory. RCA Records, 1972

Laux, Dorianne. “Singing Back the World.” Poetry 180: A Turning Back to Poetry. Ed. Billy Collins. New York: Random House, 2003. 6. Print

Posted in bone marrow tranplant, cancer, Childhood Cancer, Eng Comp, hope | Tagged , , , , | 1 Comment

A tiny slice.

I have always tried to be a parent who speaks truthfully and frankly. Having childhood cancer in our lives has not diminished this. In fact, it has shown me that being truthful and frank is an invaluable gift to The OffSpring’s future selves.

AnnMarie and I both fundraise for St Baldrick’s Foundation. As was the case for 2012, we both received our copies of their annual report in yesterday’s mail. I stay current on St B’s goings on so I did not peel it open immediately upon arrival. AnnMarie? She had that puppy open as soon as she laid her hands on it. In order to help me with dinner and read her report, she propped it up against the microwave and went to work grating the cheese.

Default title upload by motoblur

 

As she is diligently grating her cheese, she is applying the same concentration to absorbing the information in front of her. Very little of what she is reading is new to her. These are topics we have discussed on numerous occasions. Yet, she is receiving the information via the foundation she helped to raise money for. She is vested in being an informed charity ‘consumer’, for lack of a better word. She stops mid-stroke with the cheese, looks me straight in the eye and states: “Mommy. I wonder how long Gregory will survive.” You see, she had just read the sobering statistic that childhood cancer survivors have a greatly diminished quality of life and life-span.

What is important to note is that these conversations occur all the time. They are not hidden away during secret moments out of everyone’s ear shot. The conversations revolve around the research and results of kiddos around us. Those that came before kids like Gregory. So while we have statistical information, we always address the fact that we just don’t know what Gregory’s future will hold. We know what he is at a greater risk for, but we don’t know if/when these things will happen.

Tonight at the dinner table, she is still poring over that report. This idea that treatment can cause death and destruction to a developing body is baffling to her. Tonight it was: “WHY would you go through treatment, knowing how awful it is.” It was then my turn to let her know that we don’t have a choice. The only alternative is certain death. I asked her: “Can you imagine what would have happened Gregory not been treated?” The look on her face spoke volumes. It clicked. She understood the quandary of ‘Damned if you do. Damned if you don’t.’

Meanwhile, Gregory is bopping around doing his thing. Interjecting with reflective thoughts of his own. Along with an abundance of hugs, kisses and ‘I love you’s. for me. He is beginning to have just a hint of understanding about his Odyssey. I think last night really started the wheels moving and he had a glimmer of realization over how amazing it is that he is surviving.

Curtis also offered a choice bit of reflection, too. “Remember when all we used to worry about were bee stings, bruises and such?”

Oh, kid. I remember. Vaguely. Most of the time? I don’t remember what parenthood was like before cancer.

One honest and frank conversation at a time.

~MindiTheMagnificent

“What is uttered from the heart alone, will win the hearts of others to your own.” 

Johann Wolfgang von Goethe

 

Posted in Childhood Cancer | 3 Comments

Modus Operandi

I don’t ‘do’ idle chit-chat, anymore. I shiver when exchanging pleasantries. If you ask me a question or initiate small talk, be prepared for an unexpected answer. 

It’s not that I don’t have time. I have discovered that I have much more time than I ever thought I would have at my disposal. In fact, I have 24 hours. Everyday. 24 hours to use as I choose. It’s in my choosing that the content has shifted. Which includes small talk. I find myself wanting every last moment to have meaning. I want walk away from each encounter having exchanged something that leaves an impression. If that is not possible, if I don’t have the energy, I will keep my trap closed. Yes. This talkaholic has curbed her tongue. 

At the beginning of January, I went back to school. For now, I am doing damage control. I spent three quarters at one of our local community colleges, 23 years ago. I tanked it. I walked away with a GPA of 1.19. Yet, I was well on my way to obtaining my Mrs. degree. (That’s a story for another time.) Today, I am pursuing my BSN (Bachelor of Science & Nursing), which is a very competitive program. I am in the process of repeating everything I took 23 years ago. It’s been the perfect exercise in learning to be a student. It’s also been an invaluable lesson for my OffSpring. Go to college when you are ready. When you do go, get serious.

These first few classes are my first real foray into ‘society’ since Gregory’s diagnosis in February of 2009. I contribute to class discussions and answer questions. Yet, I keep to myself. When I do share something about why I am in class or what my goal is……. that’s when I start to feel a little weird. I haven’t discovered the least awkward way to offer the story that I have to tell. I’ve started to refer to it as ‘ripping off the band-aid’. I blurt out the highlights in a torrent of words: “InJuneof2009myyoungestwasdiagnosedwithcancer. Heisthreeandahalfyearspostbonemarrowtransplant. Heiscurrently7andahalfyearsold. Iwanttoworkwithfamilieslikeoursinahospitalsetting.” I watch for the response. I gauge where the conversation needs to go from there. 

No matter what I do or where I go, I feel different. Other. I feel like I see life through completely different lenses than anyone else. I’m not yet comfortable with this feeling. Life spins and whirls around me and a very large portion of it I don’t even give it a second thought. I could care less what clothes are in fashion. It does not matter to me what TV shows are hot. Talking about the weather is not going to change it. 

My family is surviving childhood cancer. We are trying to thrive. I am trying to live a life of conscious mindfulness. Every little thing that I do, has an effect on everything and everyone. Man, that’s too much pressure, sometimes. 

Today at the grocery store, the check-out clerk started in with the small talk. ‘How’s your day going today?’ As is my current modus operandi, I paused, looked him straight in the eye and told him how grateful I was to be grocery shopping. It set him back a moment. Yet, he took the moment and asked me: ‘Why?’ So I told him. My son is a childhood cancer survivor and I ‘get’ to enjoy grocery shopping. That’s when the conversation truly shifted and he had a chance to spread some of his burden. A year ago, his mom was diagnosed with Renal Cell Carcinoma. She lives on the other side of the state. So far she is surviving. He didn’t need to say the words, but this kid is scared for his mom. Just below the exterior of his still pimple-faced smile, he is scared. Our short interaction allowed a bit of that fear to escape. 

We all have stories that need to be heard. Vowing to be better about sharing my stories.

Tell me yours.

Always, with boundless love.

~MindiTheMagnificent

Image

Posted in Childhood Cancer | 4 Comments

My Hero – by Curtis Bibb

The following was written by Curtis. Gregory’s 14 year old brother. It was an assignment for his English class this past fall. 

Heroes in real life aren’t like the ones you read about in comics. Heroes in real life don’t have super powers, and instead they help people by being police officers or firemen  My little brother went through treatment for a very rare kind of leukemia called JMML. Through this treatment he displayed strength, bravery, and optimism in nearly every possible way. In my life, my brother is my hero.

Although my little brother is young, he is very strong, has desplayed it many times, and is not weak. My brother is very strong. He went through a lot of pain and still had the strength to say cheerfully “Hi Curtis!” I don’t know what I would do without him. For example, my brother had chemicals pumped into him and and night for a year and fought through the suffering to stay alive. My brother is not weak. He did not give up when death loomed over him. He practically said “No Death! I will not go into your unforgiving arms! I love my family and you can never know what that is like!” clearly, my brother is very strong.

Since my brother went through so much pain, he has bravery, is very prominent about it, and he is not paranoid. My brother is very brave. He went through a lot of pain and agony during his treatment, including the doctors using many syringes on him, which he used to be deathly afraid of. For example, my brother was so brave that one time he had five shots and didn’t even flinch. Afterwards he said, “That wasn’t so bad” and fell asleep. My brother is not paranoid. He is very relaxed and is really only scared of the dark. Just like I was when I was his age. Clearly, my brother is very brave.

Becasue my brother went through his treatment, he has become very optimistic, enjoys pronouncing it to the world, and he is not pessimistic. My brother is very optimistic. He always has a bright outlook on the world, and he always tries to help if something is wrong within my family or at school. For this reason he has helped my family when nearly all of us are mad about something stupid like who didn’t replace the butter. For example, one time when I got home I was sort of mad because of somebody at school. My little brother wanted to know so I told him and he stated singing “Bright Side of Life” by Monty Python and it made me happy. My brother is not pessimistic. He is always happy and cheerful, and he never thinks anything bad is going to happen. Clearly, my little brother is very optimistic.

My brother is a hero in my eyes. during his treatment my brother displayed strength, bravery, and a whole lot of optimism. My brother went through treatment for a rare from of leukemia known as JMML. This event showed me that not all heroes have super powers.

 The Hero

Posted in Childhood Cancer | 3 Comments

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

Posted in ptsd, survivorship, video | 7 Comments