Please Come To Boston: Take #8 CANCELLED

It had all been planned quite nicely. The very necessary but ever so feared throat reconstruction surgery had been cancelled in favor of a much less invasive treatment, dilation.  This procedure would happen on  on September 6th and require only a one night stay in the ICU if all went well.

The pre-op clearance was scheduled for today. A simple zip to and from Boston. A routine check to make sure that Mando was well enough for surgery, anesthesia, and the likes. Mando has been pre-oped many times before. A synch. What could go wrong.

Yesterday, Mando got sick. Sore throat, congestion, cough...a full blown upper respiratory viral infection.

THAT IS WHAT COULD AND DID GO WRONG.

What are the odds in that I wonder???

I was with Maria yesterday and we decided there was no way he would pass the pre op as sick as he was. I would cancel.  I called today to reschedule. The surgical scheduler is out to Tuesday. The receptionist told me it is a rule that they don't reschedule for at least 6 weeks. That would be October.

I have no belief in coincidences.  I look to Mando and wonder what his little soul is up to now. I trust it is for the good of all.

Illness strikes in time to cancel surgery

Mando Paints the House

Next to playing the one thing that Mando loves to do more than anything in the world is working. Mando is obsessed with working. Perhaps because of the many obstacles, he faces he is determined to find ways he can be useful. Then again, maybe working is just a natural born passion (like my Dad). I am not entirely sure, even though I am his mother, Mando remains a bit of a mystery to me. I assure you this. If there is a job to be done. Mando will be the first one to raise his hand.

I am grateful for that!

Water-Watters

It was not yet 12 hours past when we toasted with our ceremonial Eclipse Water that I received a telephone call from Boston Children's Hospital. It was Dr. Watters.

Dr. Watters called to discussed Mando's upcoming airway reconstruction. She herself had spoken with all the other important players in Mando's medical care. Dr. Watter's also discussed Mando again at a conference the evening before ( while we were drinking our eclipse water I presume.)

"I'm just not comfortable with doing a big surgery like that on Mando. If the graft doesn't heal properly due to his leukemia he'll end up with a tracheostomy.  If he has to have a bone marrow transplant they will be in and out of that airway, I'm too afraid it wouldn't be stable. I would like to try going down one more time and see if I can't push it out a bit or remove any more tissue. I want to at least try. We will just have him stay overnight and maybe coordinate a bone marrow biopsy while he's under anesthesia."

"Push it out? DO YOU MEAN DILATE IT?" I could not believe what I was hearing. I had wished for this forever but was told that ship had sailed long ago.

"Yes, that's what I mean. We can give it a try. I guess I was trying to make it more convenient by not going down one more time, but I must take another look."

"I am all for it as long as you are planning on doing some kind of intervention not simply further diagnostics. This is wonderful." I breathed a sigh of relief. "To be honest I am truly terrified of him having the airway reconstruction. If there is any other way, by all means, let's do it!!"

Perhaps it was just a coincidence that things suddenly turned around after drinking the eclipse water.

Mando measured an inch taller in the morning. When the office called to schedule the surgery, my cell phone rang...that phone has been broken for months. It's still working now.

Eclipse Water

Solar Eclipse 2017

Valentina's bark woke me from a deep sleep. It was an unusual bark slow and uniform....and unrelenting. I opened one eye to peek at my alarm clock it was 2;30 am. It was probably a cat, I thought. Though I did admit it did not sound like her "cat" bark. I laid in bed too tired to move.

 I had gotten home late from work, just in time for Mando's chemo. He and I stayed up and watched a movie together. He has been a night owl since he got sick, I try to keep up with him when I can. I went to bed around 12:30 am and turned on the computer to do a little computer research on the up and coming total solar eclipse. I like to keep up on the myths and lore associated with such celestial events. I drifted off to sleep around 1:30 in the morning.

Valentina's bark sounded decidedly eery. Maybe it was a murderer...if it meant getting up...I suppose the guy was just going to have to kill me.

Woof. Woof. Woof.

Typically, cats, woodchucks, squirrels, garbage trucks, trains eventually pass by and Valentina stops barking. What ever had her attention was not moving...WOOF. WOOF. WOOF. WAS IT A MURDERER??

I decided to open BOTH eyes.

I could see out my window into the backyard by propping my head off my pillow ever so slightly.

I noticed an enormous red circle cascade across the horizon followed by a blue circle... repeatedly.

The eclipse had started, I thought.  The eery barking continued. I closed my eyes and lowered my head. I thought for a moment. Wait a moment....THAT'S NOT A SOLAR ECLIPSE.  I shot upright in bed and opened both eyes. I leaned forward looking out the window. I continued to see the red and blue orbs. Valentina warning me from the living room. Woof. Woof. Woof.  I rubbed my eyes. Am I hallucinating? How would Valentina know that?

 I ran to my window and pulled back my sheer curtains and saw the lights.
THE END OF THE WORLD. This damn solar eclipse, starting in Salem on a black moon during 6 planetary retrogrades, just as predicted.

Not knowing which way to run next. Scared half to death, I decided to stare at the beautiful apocalyptic event unfold before my eyes for a few seconds longer.

Wait...could  I detect rays of light streaming to the beautiful orbs?

OH, MY GOD! This was not the END OF THE WORLD....IT WAS AN AMBULANCE!

I ran to the front of the house and opened the front door to allow the EMT's  in.

My mother, 92 had called them from a phone in her room for having SOB...shortness of breath... I was having the other kind of  SOB. Mom had both kidneys removed 12 years ago. She goes into fluid over load every so often, when it is near a dialysis day. I was very relieved to find out it was NOT the end of the world. Away she went to the local hospital and I went back to sleep and Valentina did too.

Celebrating the Eclipse

Me and Mando at a local spring

Later in the morning Janelle stopped by and came to see what we had planned for the actual Solar Eclipse. I had thought about making some Eclipse Water and Eclipse Tea. Mando and Janelle agreed this was a good idea.

The three of us discussed all the various beliefs and traditions held about the eclipse. We all agreed we liked the one that viewed the sun and the moon as lovers, therefore, you should go in your house and not view the eclipse, instead sit in sacred silence.

So it was.  Prior to the eclipse, we gathered spring water and place around our sacred circle. Held a ceremony of releasing that included a Bon fire and headed inside.

We sat. We fasted. We meditated. We made our own tradition.

Mando gets spring water to make Eclipse water

Rosemary and Sage

Janelle and Mando at the spring

Later we drank that night we drank the water and the solar eclipse tea we made.

It was soooo good.

Sometimes Even Superman Needs A Little Help

Even Superman Needs A Little Help

While at the Pulmonary Department, one of the requests from the ENT was for the doctor to "Maximize Pulmonary Function". The Pulmonologists reported that this would not be possible given his airway...however what we could try is to include nebulized hypertonic saline treatments to his routine.

Mando was excited to get a new device. His nebulizer at home dated back to his birth and if you want to talk about things that were not optimal, his old nebulizer was one.

So we left Boston, with no testing done, but a new treatment that gave new hope. The doctor cautioned us about some problems we could encounter with these treatments.

Optimally, a high-frequency chest wall oscillation inflatable vest would be recommended, but that would require a CT scan and we did not have one available.

We take what we can and chalk the rest up to a learning experience. A big sigh...NEXT TIME. A  tomorrow filled with follow up calls on how to smooth the communication out between parties.

We try something new in hopes it helps Mando, our Superman

Breathe a little easier.

Poor Communication Likely Root Cause of All the World's Problems

Contrary to what you have been told, smoking is NOT the cause of all the problems on Earth. Though popular belief blames smoking for everything from halitosis to inflation, I think it's evil has been unfairly notarized.

If you want to pick out today's Big Bad Wolf, in my opinion, it would be poor communication. I should point out that I had an English professor that once wrote on one of my papers to never write "In my opinion".  He said it weakened my argument and I should just come out and say what I mean. I guess that was his opinion.

IMO. That's the first problem. For the longest time, I read that as Eemoe, and had no idea what it meant. Why ? Because I am a GROWN UP.  Now that sounds rude, right? That's because I am typing and you cannot hear my tone of voice or see my gestures. So much can be misinterpreted by the written word. By GROWN UP, I actually mean OLD. OLD-Once Loved Disco, Yeah, THAT Old.

Language barriers resulting from a variety of differences in our backgrounds is one part of the problem.

Communication or the lack thereof becomes particularly problemsome in our relationships. Whether it be with our partners, our family, our friends, our neighbors, our coworkers, or our business associates you can rest assure when problems arise there has been a breakdown in the line of communication.

Honest and direct communication is another part of the problem as is follow through with communication.

 Remember the telephone game as a kid? Well, perhaps the people that Once Loved Disco do. The message you start to relay is seldom the message received after it is exchanged through many parties. I would say today that many messages seldom reach their final destination.

Our messages get lost in an ocean of other messages and never seen or heard from again.

Our Institutions illustrate this on a grand scale from Education to Government, to Every Industry including Healthcare.

When I gave birth to Mando, I was on emergency medical leave from Grad School. I was going to be a social worker at the time. A professor from my school called to check-in on me. I spewed my frustration of the current management of both Mine and my baby's healthcare. I was new to the game then and I was astounded. The professor told me that the way that our healthcare system is run results in the fatalities that would be the equivalent of a major plane crash every day of the year. Completely unacceptable and completely avoidable...The culprit..NOT CIGARETTES.Communication errors. I don't know if it was fact or his opinion...but I believed him.

When Mando and I arrive at Boston on Tuesday for our surgical clearance from the pediatric pulmonary department everything would have been just dandy except for the complete breakdown in...you got it...communication.

I had spent numerous phone calls arranging a prior approval and secured a number to call to ensure all testing needed at the visit would be included on that approval. When I arrived the approval was canceled, the insurance company listed wasn't mine, the wrong primary care doctor was listed, as well as the wrong referring doctor. None of the chest x-rays or ct scans were sent from the oncologist's either. When Boston tried to call the insurance company and the oncologist they got answering machines.

Mando could not have his airway clearance test done nor any other tests for that matter. We drove 3 hours to one of the best pulmonologists in the nation at the number one leading children's hospital and were stopped dead in our tracks because messages didn't get through.

I wasn't even angry. This has become so commonplace its cliche.

Mando awaiting surgical clearance

We have the latest technology. The brightest and best educated.  The best medicines and the advanced research. Yet we can't get a fax sent or a phone answered.

Hate the smokers if you will but if you really want to save lives lets all learn how to fix this blatant ongoing communication problem. IMO, of course.

Eyes Wide Open

I have traveled to Boston enough times at this point that I swear I could drive there with my eyes closed, in fact, Mando always has. That is up until this last trip.

Mando was wide awake the whole drive both going to and returning from Boston. This made for an interesting trip. 3hours each way, a lot of ground can be covered, literally and figuratively.

Mando began discussing when we would be staying in Boston next. He mentioned, "for 5 days."

I corrected him "Mando,  we will be staying for 15 days when you have your surgery. You will need to be in the ICU for 10 days and on the regular pediatric floor for 5 days. "

"I only heard about the 5 days. When is this happening?"

"It hasn't been decided. That is one of the reasons we are going to see pulmonary today, to have their opinion. It is possible that we are looking at the end of September?"

Mando Gasped as he heard this. His eyes widened and then filled with tears.

"But...But...But what..." he tried to speak but was too choked up to get the words out. He swallowed repeatedly. With all the effort he could muster he forced out  "BUT WHAT ABOUT SCHOOL?"

A tear streamed down his cheek, and with that tear, my heart broke wide open.

Few things, if any, will ever reduce Mando to tears. One thing for certain is being kept from other children. The other thing is being separated from his family.

Pandora's box was open.

 For three hours the discussions continued in a manner not at all common for Mando, perhaps long overdue. If ever his sense of truth and honesty and justice were visible it was during these heart-wrenching conversations.Yet even for him, these topics delved deeper and were more profound than I have ever recalled. I momentarily felt as if I were meeting Mando for the first time. At least a side of him I have never known.

We were about 20 minutes outside of Boston and Mando announced to me that he thought it best that he stay homeschooled until after the winter break. He assumed he would be healed from the surgery by then but if not he would be willing to wait longer.

"I really would like to have all of this behind me. I would hate to miss so much school going to so many doctors appointments." Mando seemed content. He had worked through his angst and ended at a better place.

When we arrived at Boston Mando said "Thanks, Mom. I really enjoyed talking with you like that. We should do that more often."

We did...on the 3-hour drive back home.

Give It a Day

The events in our life require emotional digestion... so to speak.

What happens in the heat of the big moments such as births, deaths, weddings, funerals, baptisms, graduations, reunions, holiday gatherings, and so on and so forth appear a certain way with a particular set of emotional perceptions.

The day following these big moments is a day of reflection. This is where the "digestion" takes place. All the elements of the event mixed together in memory, rehashed, recycled, tumbled through conversation, video and photographs. Over the next 24 hours, the event subdues, emotions settle, and the final recollection is stored for future story telling as "How it truly was..."

I needed a day to reflect on the trip to Boston. I needed to digest it all.

I dared not write so immediately. Initially, I felt like I had been shot out of a pin ball machine.

But why? What was it about this trip that left me feeling so battered? I gave it a day to think about.

This morning I had my answer.

This trip to Boston had a cumulative effect of the entire ordeal, the journey of one year and 2 weeks.  The new developments though not entirely huge in and of them selves were but a piece that sits upon a tower.

Our game of Jenga is getting tall...but it isn't a game is it?

After the day of digestion...and a good night of sleep...I feel renewed strength.

The journey, quite long now, is the same as always,
one day at a time. Today is the day we have, I am ever so grateful for that.

Stay tuned for more about the Boston trip.

Please Come To Boston : Take #7

In Search of Surgical Clearance and hopefully a whole bunch of answers.

He's a Cutie, see?... What QTc?

Baseline EKG

As part of the protocol to take Tasigna, Mando had to have a baseline EKG BEFORE starting this chemo drug.

Mando also had to have an EKG at 2 weeks after starting Tasigna. He had that yesterday.

Mando will have to have EKG's every 3 months while he is on this drug. Mando hopes to be on the drug indefinitely.

The reason for the EKG is to look at the QTc...to watch out for a prolonged QT interval.

Yeah, that's that Cardiac lingo I was talking about...It's all Greek to me. ( Can I still say that? I apologize if that's offensive. )

Yesterday during Mando's appointment we discussed Mando's baseline EKG.

His QTc was ALREADY prolonged.

WHAT THE HELL? YOU HAVE GOT TO BE KIDDING ME? What NEXT?

2 week follow up EKG

I have not heard back about yesterdays EKG yet.

We'll go for an echocardiogram in two weeks. They will take a look inside Mando's heart.

 I am certain they will see a heart of gold.  My Father had an enlarged heart. They said it was because he was an athlete. I knew better. I expect  Mando's to be equally huge.

Matters of the HEART

 I AM A NURSE.

Not just any kind of nurse, I am a psychiatric nurse...to the core. I take pride in that. I never planned on becoming a nurse. It is by far NOT my first career. I have no idea if will be my last Life is strange like that.

When I was beginning nursing school the instructor asked for the students to raise their hands for which field they should wish to follow, Critical Care, Labor and Delivery, Operating Room, Pediatrics, and so on and so forth.  The hands went up. When Psychiatric was mentioned I shot my hand up right quick and my rear end lifted a little out of my seat, as if I wouldn't get noticed out of all the others. I noticed a strange hush. I thought I heard one person giggle, so I looked around, my class.
No one else raised their hands.

I was alarmed. I let out a gasp and said "REALLY PEOPLE?!! JUST ME??? I THOUGHT EVERYONE WANTED TO BE A PSYCH NURSE??? Well, I'll be damned." They laughed, and so it was. I graduated and was employed right off the get go as a Psychiatric nurse and remains so to this day. It is my passion.

The field that bewilders me most, that remains beyond my comprehension is Cardiac. I am in awe of the cardiac nurse. I simply can't grasp it, never could. To me, a broken heart is, well the loss of one's love or purpose or pet. That sort of thing. A longing, an emptiness, a feeling of despair or regret or hopelessness about the fracture in one heart of hearts.

To the Cardiac nurse, it has something to do with atriums and ventricles, sa nodes and QRS complexes... oy vey. I mean I get it, but I don't GET IT  get it. It's difficult.

I have an abundance of admiration for the Cardiac nurse.

In my personal life, the heart is a spiritual vessel. It takes a beating...and keeps beating. sometimes it needs a great deal of healing. I keep rose quartz near my heart chakra at all times. Some people would think that qualifies me for needing a psychiatric nurse more than being one. My personal beliefs have nothing to do with clinical practice.

Often when I meet Mando's new doctors. They quickly come around to the part where they say "So I hear you're a nurse."

I always answer the same "I AM A MOTHER FIRST, nurse second. The mother part is the part you need to worry about."

What does this post really have to do with Mando?

HIS EKG...to be continued

Taking Ownership

Mando reviewing his blood work with Dr. Maria, his favorite oncologist.

Of the multitude of things that have surprised me much one stands out above them all as most unexpected

It was NOT Mando's ability to endure pain. Mando has known nothing but pain ever since the day he was born. It is quite normal for him.While I can not bear to see him in pain he can not bear the same of me. His endurance keeps my tears at bay and that makes him happy. At least I suspect that is how it works.

Likewise, it is NOT how Mando inspires others. Mando has also had this gift since he was a wee babe. His inspiration has something to do with his energy, his eyes, his smile, his essence. It's just Mando. It's nothing new.

No, what truly SURPRISES me is how Mando has taken ownership of his condition. Mando takes his chemotherapy on his own. He sets his alarm for his doses, He manages his fasting. Mando tells me when it is time to order refills. Mando also asks all of his doctors' relevant questions. Mando continually deepens his understanding of how his body works and how it could work better.

Given Mando's brain injury and developmental delay that might surprise anyone.  Mando puts 110% of himself into everything he does. He gives more than he has. He does it of his own free will. He is self-motivated.

Mando is not self-taught, however.  That's where we come in.

 As Mando continues to learn about his  various conditions we manage to teach him an ever expanding pool of knowledge without once having to use using the  C WORD,

OH NO,  NOT THAT  C WORD. That's my favorite word. We use that all the time.

The OTHER C WORD,  the SIX LETTER C WORD...NOT COOKIE, BUT THAT'S GOOD ENOUGH FOR ME!

Do Mando's Feel Pain?

My father, also Normando, called Mando by his mother spent a portion of his life feeling pain for a living. Or did he feel it? As a boxer, he exchanged plenty of punches to his fellow pugilist bout after bout but never said  "ouch".

My mother became suspicious of his ability to endure discomfort, One summer day my father was sitting on the floor watching TV. He had a sunburn. My Mom snuck up behind him and gave him a slap on the back. Sure enough, my Dad finally yelled "OUCH!What did you did you do that for?"

"I was just testing, I thought maybe you didn't have feelings. I guess I was wrong."

I am glad my Dad let her live. So I am here today and so is his namesake, Mando.

Normando Rubio

Today we went to his oncology appointment in Albany a day early. I thought it best to not try to go to this appointment on the same day as Boston. Batman wouldn't let me borrow his car and my broom only seats one.

We started off at the lab. Time to draw the monthly PCR and routine bloodwork. We'll see if the new chemo has budged the BCR-ABLE in the right direction. On this, we pray.

Seldom do we ever have to wait at the lab. Today there was another child ahead of us already with the phlebotomist. The child was screaming and crying and carrying on.

My heart broke for this little guy.  I started to cry. I forget how scary all this must be to kids. Mando makes it all seem so easy.

It's supposed to hurt?

Mando was in shock. It had never occurred to him to react to the various tests and interventions he goes through.

The little guy's parents seem to handle his tears well. Better than I could from the waiting room. I could do all I could to keep myself from running in the room.

Normando Mason

I wonder if it is not an accident but by grand design, we are put together on this journey in life, to compliment one another's strengths and weaknesses.

If so I am grateful for Mando being so strong for me. I couldn't survive if it were any other way.

When I tell him about his strength he says "Well, of course, look who I'm named after."

C IS for Cookie but it is NOT TIME for Cookie

I just came home from work and was greeted by Mando excited to hear about my day.  In an effort to make my transition home more comfortable Mando, always the gentleman, offered me a drink.

''Mom, would you like a can of seltzer or ginger ale?

"Oh I would love a lemon seltzer but they're in the downstairs fridge, do you mind?"

"Not at all" Mando smiled and bounced off but not before grabbing a soft chocolate chip cookie and taking a big bite to kick off our evening social.

Mando made it as far as the kitchen when he yelled back "Mom, what time is it?"

"9:30. Relax you've got another half an hour until your chemo."

"Mom...I ate a cookie"

"Yeah, I know, so wha... oh no... well I guess meds are at 11:30 tonight."

My Mom protested "For just a cookie?!!" (That's a grandma for ya)

""Yes, for just a cookie, He has to fast 2hours before and 1 hour after each dose no exceptions"

                             You can have your cookies but you can't eat em too

Luckily none of this bothered Mando in the least. He brought me my seltzer with a smile and knew the later med time means more time he can play PS4 with Mercury.

Who can sleep through this thunderstorm anyway?

Catharsis

"I know what you're going through Ma, I've been there before. It's like you hurt SOOO MUCH that you can't feel anything at all"

My daughter Alyssa was on the phone as she spoke these words. I had spoken with her many times since I returned from Boston and perhaps she had said them before, I don't know. I believe she was deliberately trying to shake me out of the stupor I was in. I was stuck in some form of robotic mother mode.

This time as I heard her say those words it was as if she had put a screwdriver in a lid of a can of fresh vacuum sealed paint. I was the can of paint.

"Oh, Alyssa...." I could say no more. I just sobbed. And sobbed. And sobbed.

"Oh, Mommy I know. I'll be right over" Alyssa hung up.

Alyssa arrived 20 minutes later with a  St  Jude prayer candle and inspirational
bookmark for me. She brought her four children for Mando. Nothing in this entire world makes Mando happier than other children.

One Week...Not So Weak

One week ago today we set out on a new adventure in the unknown world of blogging.

In just one week we managed to get 15 followers and 1954 PAGE VIEWS!!!

NOT  TO SHABBY!!!

Yet I confess...I am not at all surprised.  We knew coming into this Mando had something very special. Mando had WARRIORS. Wherever Mando goes his Warriors go...in Mind, Body, and/ or Spirit.

It is your hands that hold us when we are weak.

It is your hearts that love us when we are alone.

It is your prayers that are heard when we can pray no more

It is the sound of the warrior's feet that set the tempo of our journey.

Mando can hear you. He urges me to write another post. He told me "Mom they're gonna want another post..." He knows you're there.  I am but a messenger between warriors.

I am grateful for that.

WHERE THERE ARE WARRIORS THERE IS WONDERFUL 

Dammit..Where did I put my Wonder Woman cape?

Dr. Haver's office in Boston called to tell me I have an appointment on Tuesday the 15th in Boston for pulmonary surgical clearance.

 I already have an appointment with Dr. Boucher at Albany Medical Center. Plus this is the day to have the follow-up PCR drawn and EKG.

Dr. Haver's office told me I could come tomorrow if it would be easier,
at the Waltham office, that's only slightly farther away than Boston.

HA!

While at they want me to do the prior approval...they gave me the NPI number and all...

I think I'll wait until after I finish cooking dinner...

Witch Way To Salem?

a truly patient patient 

Mando and I were back sitting in the waiting area for what seemed like a very long time. I was growing restless with ruminating thoughts about the tentative surgery. Mando waited patiently busying himself with a game on his tablet.  Waiting was a situation that Mando had grown accustomed too.

I carried a Pepto Bismol pink form I had been holding to the check out window and explained my qualms.

"I was told to wait here and someone from the surgical scheduling team would meet with us but it seems like it's been an awfully long time. Was I supposed to hand in this form? It would be just like me to sit here all night and no one knows I was waiting."

The woman smiled and took my pink form and hurried off, apologizing for my wait.

2 minutes later a door across the room open and a young brunette smiled and asked "Normando?"

We answer basic questions for the umpteenth time. My nerves were shot. I asked the nurse "Is Salem closer to New York from Boston or further away?"

"It's North of Boston, so I would say, Yes, it is further away. New York is west of Boston. Why do you want to go to Salem?"

"Because we can. Come on Mando, We are going to Salem!"

Fight or Flight. #Mando fights back and  #Mom flights back, it's how we roll.

Don't Cry Over Dropped Forks

It was getting late so rather than eat in Salem we decided to hit the road, not to mention I erroneously wore shoes two sizes too small. We got back in the car and headed southwest with a plan to stop on the Mass Pike before Mando would have to begin his evening fast.

After about an hour or so we pulled off into a Thruway rest area. Sure enough, there was a Boston Market. I thought that would be fitting enough given a Boston trip. Mando and I had never eaten at Boston Market before so it would be the perfect opportunity to give it a go.
                                                                             
I've noticed that when dining in a cafeteria style dining hall people tend to censor their behavior less than let's say more formal venues. I spied a family to my left. A man, his wife a two absolutely beautiful tow head toddlers, a boy, and a girl. The American Dream family. One of the tiny toe heads dropped a plastic eating utensil on the floor. It then that Dream Dad's demeanor changed in a flash. I watched the crimson rise up his neck into his cheeks. Black and gray puffs of smoke began to billow from his ears, which by the way matched identically from the smoke of his new balance tennis shoes as he stomped back to the Boston Market counter to retrieve baby tow a new fork. I wondered what his blood pressure might be and turned my attention back to Mando.

Mando was just licking some mash potatoes that he spilled from the side of his plate. Eating has never come easy for Mando. Chewing and breathing at the same time is especially hard.Managing to get a fork anywhere near his mouth even harder. DROP THINGS? FORGET ABOUT IT! I mean seriously FORGET...ABOUT...IT. That's what we do.  Why on earth would I even care? I am grateful just to see him breathe, that is a miracle in itself, anything beyond that...magic. That's not to say that I don't still try and teach Mando things like etiquette and manners. Sometimes he finds the rules silly. He is patient with me.  "Why must we keep our elbows off the table?"

What goes on in the lives of Mr. and Mrs. American Dream and the Tow Tots is none of my business. Who am I to judge?

I will tell you this, however. I have spent many a moment having envy of the Dream couples of America. What a privilege it must be to take so much for granted. I have spent days on my knees till they were raw and bled, begging the creator to restore some bit of function in my child's body while others had everything and never seemed to notice.

It is a privilege you would be wise to count amongst your blessings...

All in all, I count Mando..the way he is as one of my GREATEST BLESSINGS EVER!

Is This What I WANT?

It was out of her mouth and there was nothing she could do about it except apologize and stammer for new words. Dr. Watters and ENT at the Department of Otolaryngology and (ironically) Communication Enhancement made a bit of a conversational faux pas. I felt sympathy for this gentle soft spoken woman for heaven knows I have experienced my fair share of communication blunders.

Yet her words hit my solar plexus like the punch of a professional kick boxer that on impact shot a whirl or air that lodged as a massive ball in my throat. I could not immediately respond. I knew how difficult it must be for Mando to speak with an airway obstruction.

Dr. Watters had concluded her examination and jointly we agreed that she would move ahead with the airway reconstruction surgery. This surgery would involve making two incisions lengthwise on both the front and back of Mando's trachea and grafting in tissue harvested from Mando's ribs in an attempt to increase the diameter. Mando will spend a lengthy time in the ICU intubated as the graft heals. The overall hospital stay will be 14days. A tracheostomy is a possibility.............

Dr. Watters was closing the door behind her and looked back and asked "Is this what you wanted? Well, umm, not WANTED, Ummm, I mean, ummm...is this..."I wanted to save her but first, only a puff of air escaped my lips. Then I spoke...

"It is what must be done. We have no choice. Our time has run out. It should have been done years ago. It's now OR NEVER."

Dr. Watters agreed and closed the door.

My mind reheard the words "Is this what you wanted?"

WHAT Did I want? ARE YOU KIDDING ME? I DON'T WANT ANY OF THIS?
You know what I wanted. I wanted to give birth in February 2004 to 2 healthy twin boys, 40 weeks gestation, like I was supposed to. No emergency c-section/hysterectomy/ transfusions. No oxygen. No monitors. No g tubes. No Tracheostomy. No NICU. No PICU. NO Cardiac Arrest. No Brain Injury.No bilateral orchiopexy, No tonsillectomy No suctioning. No Nebulizers, No early intervention.  No Pt. No Ot. No speech. No special Ed, No Chronic Myeloid Leukemia, No TKI's, No Oncology, Pulmonary, No ENT. No Albany Med, No St Peters, No Montefiore, No Dana Farber, No Boston Children's...NOT ONE STINKIN BIT OF THIS...THAT'S WHAT I WANTED.

One last look before surgery

and yet it is what it is.  I have spent 14 years trying to out smart the Angel of Death who seems to lurk behind every corner. One painful intervention at a time always to prevent some other life threatening outcome. Not today, AOD, you cannot have my baby. We prepare a defensive strategy and prepare for

Mando's vocal cords

the future...

Mando and I proceeded to meet with surgical planning.

As painful as it all has been I am grateful for all the lessons I have learned from this courageous child.I wouldn't  change that for the world.

This boy may finally get the airway he deserves

ON YOUR MARKS...GPS SET...LET'S GO!

Over the years Mando and I have set out on many road trips... mostly for the purpose of medical appointments.  We used to employ a co-pilot from the family. Now we just use the GPS. Ready. Set. Go.

Yesterday we went to Boston. We were scheduled to meet with Dr. Karen Watters, Pediatric ENT.

This would be our 4th time meeting with Dr. Watters.

Dr. Watters is NOT our first ENT. In fact, she is our 4th.

It has been an EXTREMELY ROUGH ROAD that has led us to this trip.  A long road, with detours and dead ends.

The Search For an Airway Tour has been ongoing for nearly 14 years. The terrain has been bumpy and full of potholes.

Yet Mando endures the travel quite well.

At the outset of every trip, he sleeps until we reach our destination.

With one exception. Mando woke up exactly at 10:00 am to take his chemotherapy. Then he went back to sleep until we arrived in Boston.

We Hit the Highway in Search of an Airway

Today we set sail for Dr. Watters at Boston Children's Hospital. We hope for good news. A plan. A safe reconstruction of Mando's airway.  Mando has been living with an inadequate airway since he was born at 2lbs 11oz. The first attempts to place life-saving artificial ventilation most likely caused the damage that must be fixed now.  We journey in hope...

Today is 8/8/17 (1=7+8) and we are traveling to 333 Longwood Ave 3rd floor. Very auspicious!!
I will take it as a good sign.

Where He Leads I Will Follow

Tomorrow follow Mando and me as we head to Boston Children's Hospital to get some answers.

For now, just follow us on this blog. Just click the button on the right. Every follower brings a smile to this boys face. Thank You and Good Night. Enjoy tonight's moon to the fullest.

Attachment: Always and Forever

I received a private message from a friend and follower of Mando's journey.  She wrote of a proposition she had thought of for Mando.  Knowing of Mando's great love for animals, our friend inquired if he might be interested in caring for a kitten for a few weeks. The kitten's owner was between apartments and was moving to a NO PETS ALLOWED place. This would be a temporary placement until the kitten's owner could find a more suitable housing arrangement.

How lovely, I thought, Mando's first animal rescue job. I considered how having to give the kitten back in 3 weeks might affect Mando.  What if he became attached? Wouldn't he be sad to relinquish the kitten when the job was over?  I asked if there was a possibility in outright adopting the kitten. There was not. I told my friend I needed a little more time to decide and I would get back to her. I would consult with Mercury first.

I shouted from behind my computer to Mercury who was in the kitchen at the time.  "Merc, someone has offered for Mando to pet sit a kitten for 3 weeks. Do you think Mando would become too attached to it in that time, and not be able to let it go?"

Mercury poked his head out from behind the open refrigerator door and yelled back.  "I'd be more concerned with if we can keep the kitten alive for 3 weeks!"

Apparently, the refrigerator's inability to auto produce complete meals left Mercury feeling deprived.

"Never mind Merc...I'll discuss this with Mando. Oh, by the way, I'll be cooking dinner in about 15 minutes...if you think you can survive that long."  I went off to find Mando playing in the backyard.

"Mando! Guess what?  A friend of ours messaged me and asked if you would be interested in pet sitting a kitten for 3 weeks. Of course, you would have to give the kitten back after the 3 weeks were over. What d'ya  think?  Your first rescue animal assignment!"

Mando was quiet for a few moments.  Then he said,  "A kitten? We would have to give him back?  I don't think so, I would be too worried about attachment issues."

I couldn't believe what I was hearing. That was EXACTLY what I thought...or so I thought...

" I mean, what if Klaus (our kitten) became attached to the new kitten and then they were separated, never to see one another again?  I don't think he could stand the pain." Mando was very serious.

 THE KITTEN? He was worried about the kitten?

"Klaus already was separated from his brother and two sisters. That is hard enough. I  think one more loss could put him over the edge. He might become suicidal. NO, I WON'T DO THAT TO HIM. If we could keep the other kitten, then yes, but not if we have to give him back. I REFUSE TO DO THAT."

Mando put his desires aside for the sake of his kitten's feelings. That's Mando!

Niklaus Mason

Ironically, Klaus is named after the character Niklaus Mikaelson from the television series The Originals. Spoiler Alert. In the last episode the 4 Mikaelson siblings must break their vow of  "Always and Forever" and separate. They go in 4 different directions, vowing never to see one another again.

Drop the Pills and Let's Head for the Hills

It was last year when the doctor confirmed my worst nightmare. Mando had Chronic Myeloid Leukemia. Knowing that is one thing. Watching then administer chemotherapy for the first time is quite another. The medical staff cleverly arranged to begin the infusion while I was out of the room. I returned to the horrible site of this toxic substance pouring into my baby's body. I could scarcely breathe. My mind screamed STOP. I trembled for I knew this was for the best. I couldn't stop a thing if I wanted to. I hated every single solitary millisecond of what was happening. I was helpless to do anything about it. In my heart of hearts, I wanted to rip every IV, port, catheter, and tube from his frail little body with my bare hands. I wanted to snatch him up as fast as I could and head for the hills, where no one would ever find us again... I didn't. I stood. I watched. I cried. I prayed.

Mando just started the second week of his third chemotherapy. The last two drugs did not do as we hoped. Mando takes his chemo twice a day. He must fast for 3 hours with each dose. He is supposed to take this for the rest of his life. Mando does not complain. He is so utterly NOT  bothered by it that you would swear he was taking a couple of aspirin. I still hate it. Every day in my mind I throw those pills as far as I can and grab Mando and head for the hills. Every day I know we run but we could not hide because Leukemia would follow us. Instead, I stand by. I watch. I cry. I pray.

Chemotherapy if you must inhabit my little boy's body then I beg you, please to do your job, fight as hard as Mando does and once and for all kick that leukemia's ass.

So we suck? Now what ...

Beginning a new blog is a daunting task especially for someone not so computer savvy as myself. Truth be told beginning anything new can be quite a challenge, so much so that it might seem easier to NOT try anything new at all.

I am going to break RULE #1 right off the get go. The rule is, never talk about how bad you are doing something while doing it. Fake it until you make. WRONG. I admittedly have no idea how to blog. But I am going to do it anyway. There I said it. Now what?

I did a little research last night on How To Blog. I was alarmed at what I read. Basically, time and again I saw the same message. "You probably suck so don't waste your time." I read messages that said, "Just because you THINK you're a good writer doesn't mean you are. Do NOT start a blog!"
My favorite was "Whatever you do, DO NOT WRITE ABOUT YOUR LIFE! It's boring and nobody cares." Yikes!! That is exactly what I am going to. Now what?

I considered these internet reprimands and warnings carefully. After all, they were written by SUCCESSFUL PUBLISHED BLOGGERS...who am I to disagree? I pondered. They're right. I do suck. I am not a great writer. I'll probably misspell 30% of my words and have grammatical errors up the wazoo. And YES I am going to write about my boring ass life...Now what?

I thought a little bit longer...I remembered I was also going to write about Mando.

Mando, when compared to other kids his age, SUCKS at just about everything. Does that stop him from DOING anything whatsoever? HELL NO!! That is what is most marvelous about Mando, he simply doesn't give a hoot about how much he sucks or doesn't suck at the things in his life, like talking, walking, running, jumping, throwing a ball, shooting an arrow. Mando does what Mando does because he is ALIVE and because he is ALIVE he will do as he desires without care how he measures up to others. Mando does not operate from the ego. Mando IS. Mando DOES. Mando no matter how difficult the task, Mando PERSEVERES. MANDO DOES NOT SUCK.

I thought about all the things I do in life that I probably suck at, cooking is one, I still do it. Dancing is another...sucking has never stopped me. Singing, Oh Lordy, cover your ears Cause I SUCK OUT LOUD...REALLY LOUD and I won't stop singing until they gag me! Don't even get me started on my sense of fashion...WHAT NOT TO WEAR  on steroids. If I only did things I didn't suck at I probably would never get out of bed...(I'm really excellent at sleeping)

So I decided to continue with the blog, sucky as it may be because that's WHAT MANDO WOULD DO. I will shoot my arrow and if I miss the Target, I'll shoot again. Why? It's for the love of shooting the arrow, not for the glory of hitting the bull's eye.

If there is something you want to do in life don't let NOT being good at it stop you. DO IT ANYWAY!!

So we SUCK? Now what? SO WHAT!! WE ARE DOING IT ANYWAY. Why ? BECAUSE WE WANT TO! It's never been about being great it has always been about greatly loving what we do, even the tough stuff. I am grateful for that.

The Journey Continues

It began 1 year ago as a chronicle of facebook posts of a young boy with multiple disabilities newly diagnosed with Chronic Myeloid Leukemia.  The story unfolded in its raw, uncensored way, and revealed an emotional journey of  a little boy, from a little town, and his family attempting to cope and have hope in the darkest of times. The little boy was Mando.

Mando surprised everyone. Deep within his pint size body emerged a strength that inspired all who came to know him. Mando captured the hearts of his community.  As his journey continued his community grew. Mando's circle of friends would spread far and wide including folks from around the globe. The community responded with overwhelming support as they cheered their favorite contender on punch after punch. No matter how hard he was hit Mando would not be knocked out. No one was more surprised than the very woman who gave birth to this small but Mighty Miracle. Normando Miracle Mason became his mother's greatest teacher.

In one year's time, Mando would continue to grow and teach and inspire. His mother would attempt to journal the events for all who wished to follow along and journey with them. In one year's time, the words have grown enough that they became deserving of a special place...a blog.

I am Denise. I am Mando's mother. I have long known he is not just MY child. Mando is a child of his community, a community that is ever expanding, far reaching and ultra loving. This blog is for you. This blog is for me. This blog is about Mando. He faces many new challenges. I am assured he will do so with the same strength, courage, and valor he has always.

I do believe that some of the strength he is bestowed has come from the vibrational force of those that care for him. Mando is held up by angels, guardian, archangels and most importantly EARTH ANGELS just like yourselves. For that, I am ever so grateful.

Join Mando as his journey continues and the bell rings on Round 2 of  #MandoFightsBack.