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.

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?

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.

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.