Tuesday, February 28, 2012


I don't want to write this post. In my past life, I wouldn't have written it. But for some reason, I know that I have to. For some reason, Ryan and I know it is important that you all know what is going on.

So I will do what I always do. I will write. Whether I like it, or not.

Before I get to the crap of the matter, you should know that my husband is the most important person in my life. He is honestly in every capacity of the word...my "best friend." My boys are important to me, they are my heart and soul...but they will find their true loves one day, and in turn be complete as I am. Ryan is my person. He is so much better than me, and his love is my greatest treasure.

I have always known that what I have with Ryan is rare, and special.

There isn't a day that goes by that I don't think to myself how lucky I am to have him.

We are one.

So why this is happening to US, I do not know. I can only believe that there is a reason. There is a greater plan that my eyes can't see yet.

Ryan has cancer.

Or maybe, he still has cancer.

I didn't really write about it a few years ago, but Ryan had Melanoma. It was one mole that looked like a pencil eraser, and we only had it removed because it kinda grossed me out. It wasn't black or asymmetrical or anything when we had it removed. The doctor sent it into pathology, just to make sure it was nothing. But it wasn't nothing. It was a big something.

Surgery and chemotherapy. It was a long haul, but we thought it was gone.

A few days ago we found out it isn't gone. In fact it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It's pretty much the worst kind of cancer there is.

But that is neither here nor there right now. Right now we are focused on moving forward and getting things done.

He begins whole brain radiation on Thursday. He will have this every day for a few weeks. He'll lose his hair and be tired, but we are hoping for lean side effects.

The next step will be more taxing. The original specimen of his cancer removed a few years ago is now being analyzed at UCSF. Depending on the mutation it has, we will form a medicine treatment plan. Chemo or immunotherapy. Both of the medicines that are on the table have been approved by the FDA in just the past couple months. We feel completely blessed, and don't feel it is an accident that we were diagnosed this moment in time. If we found out only months ago, these amazing therapies would not have been available.

Why am I telling you this? This is so personal, and usually this would be just too close to home to share with all of the world. But Ryan and I have the strongest impression that we need to share this with everyone. We NEED your prayers.

To be honest, we need a miracle.

We have set aside this Sunday, March 4th for fasting and prayer on Ryan's behalf. Our hope is that people all across the world, every denomination and belief, will pray for a miracle for Ryan. If you feel impressed, please ask your family and friends to participate. If you belong to any prayer groups, or if you have a close church family you can ask to join in, we would appreciate it more than you'll ever know.

God will provide. Let us bombard heaven with our pleas.

Facebook has already exploded with support. My inbox is full, My IM's are never ending, and my status updates are too numerous to keep up with.

Other D Mama friends have set up a facebook page for me. You can find it here. I'll post updates there. Please share the page with your family and friends. The more prayers the better. I can't help but feel deep down that this is true.

There is the craptastic truth. All of it. Uncensored.

How are we? We are on the roller coaster. We are laughing one minute, delirious with tears the next. But we FEEL the prayers. And our hope grows stronger by the minute.

Somehow we know we will be ok.


It won't be easy. But the craziness that lays in front of us will be worth it in the end. We stand ready to receive that miracle.

Pray friends. Just pray.

Friday, February 24, 2012

Luck, Scientific Genius, or Black Magic Wonder Woman?

An experiment? A Hypothesis? Call it what you may. But last night I tried a little somethin' somethin' out and got some pretty remarkable results.

You be the judge.

My feet drug as I slumped to the boys' rooms at 12:30am. My head was heavy, my limbs were rubbery and my head was filled with uncertainty.

As I checked the boys I spontaneously tried some black magic.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."



Now many of you might think that my muttering was all for not. But I present you with the hard facts:

It worked 33% of the time. 1 out of 3 times. THAT is nothing to sneeze at people!

Those of you thinking I've lost it a bit might want to dispute the many other "scientific/black magic hypotheses" I have made throughout the years.

Like the fact that if the boys have a banana for snack at school...they only have a 30% chance of going low by lunch. No. I don't have the hard numbers to back that one up, but I've got something better. My gut.

One might think it is crazy to hold my breath through the tunnel near Sausalito whilst on the way to the endo's office...making a wish that all the boys A1C's will be better than I think they are.

Well here's a shocker for you. IT WORKS! Every time! Boo YEAH! Of course, I always THINK they'll be in the teens, but that is neither here nor there.

Some of you might think I'm off my rocker that when the phone rings I say a little prayer that it is a telemarketer. Better someone selling me solar panels than a boy calling me from school with a problem blood sugar, I always say.

Prayer works. Telemarketers are coming out of my ears around here!

Luck? I think not!

Why does bolusing 100 carbs, (120 if there is ice cream involved,) at the Chinese all you can eat buffet work ALMOST every single gosh darn time? I don't know. It just does.

The results are practically irrefutable.

I got a million of these folks! Grey shirts on Wednesday, Waffles on Mondays...it goes on and on!

Sure, what works for me might not work for you.

(Ok, what works for me PROBABLY WON'T work for you.)

But as we ALL know...

Your black magic may vary.  It's a scientific fact.

Tuesday, February 21, 2012

And the numbers follow...

The fact that our son M will be a Senior next year has been hitting us hard. Time is flying, and the time that we have to force him to be with us is getting slimmer by the minute. Because of this, we have been making it a priority to go out on family "adventures." A couple times a month we try to go do things our family has never done before. Yesterday our adventuring took us to a couple tourist destinations in San Francisco.

I keep replaying the day back in my mind. It was a whirlwind of fun, and a great family bonding day.

But whether we like it or not, diabetes is part of our family too. That means it got to bond as well.

It occurred to me that every wonderful memory our family has made...numbers are attached to it. Take this picture for instance...

We were on top of Coit Tower, and B and L were running high. I gave them less insulin for breakfast because we had planned to climb 21 stories of stairs to the top. We arrived only to find that the stairs have been closed for quite some time so we had to take the elevator. (I was part horrified, part completely relieved if you can imagine.)

The picture below is our family in China town. Everyone's numbers were AOK by then...but still, they were there in every moment.

And then, when B and L experienced Benihana for the first time...can you guess who was low?

We can run, we can adventure...but we can't hide. The numbers find us. They are a constant swirl of information above us at every moment.

The fact remains though...we had an amazing time as a family. We laughed and shopped and ate like nobody's business...and even after all that Japanese food..the boys went to bed with 112, 130, 117. (That last one was J's. He ate lunch with us, and then later went to an all you can eat Chinese Buffet for dinner with his friends. HOW DOES HE DO IT!!! I almost think he is magic.)

Anyway...we made great memories regardless of the numbers. The smiles were priceless, and the frowns were easily melted away with some fast acting apple juice, kindly comped to us by the bar for L's low.

The memories of the numbers are trumped by the memories of the fun. It is always worth the risk to take a journey away from the home. Maybe diabetes won't play fair...but you can bet your family will overcome and find a way to make it all work out in the end.

Fighting numbers is no different on the fly as it is at home. It is worth the chance.

And definitely worth the memories...

Wednesday, February 15, 2012

It comes naturally.

When we are suffocated with numbers. When we are buried in ratios that make no sense.

It comes naturally for us to rise up above the diabetes smog and find the air we need to keep going.

When our children are burnt out. When they voice their frustrations.

It comes naturally for us to lift them above us, and place them on the pedestal they deserve.

As parents we refuse to let the darkness overtake our children.

As parents of children with diabetes, we take the hurt and we use it as fuel to take that next step.

It is only natural for us to fight.

Because when it comes to our children there is no losing.

There is no surrendering.

Sure, there are times when we think this hole is going to collapse on us.

Sure, there are times when we are sure the sun has forgotten to shine.

Sure, there are days when we announce we are defeated...

even though we aren't.

Because even if we let the moment win...we don't let the despair win.

We rise up.

We check and we check again. We tweak and we tweak again.

Losing isn't an option when the very air we breathe lives with diabetes.

Having a bad day?

Having a bad week/month/year?

You are not alone. And even though you want to give up...even though you say you are going to give up...even though you are sure you are going to give up...

I know you won't.

I KNOW it.

(Because you haven't given up yet. Right?)

Look at your track record. You win every war.

You eventually win them all.

Here in the DOC there is an entire bottle of "same." Take two and you'll feel better in the morning.

It comes naturally for parents to hold the world on their shoulders.

Naturally, we want to take all the hurt away from our kids by using our super power: Love.

We want to, but the hurt comes anyway. All we can do is use our love to salve their pain.

Our love can't cancel out the pain, but it can soothe it...and that is enough.

You are enough.

Your works are enough.

You can do this.

Our children can too.

If you are consumed right this moment, remember that our lives on this earth aren't meant to be miserable all the time. We are meant to find the joy in the shadows of the misery. There will be moments that seem to be devoid of light. But it is all smoke and mirrors...the joy is always there.

We can find that joy in the smiles of our children. We can find it in the kindness of friends. We can find it when we help others.

We can and we will find that joy.

Because when we love our children as much as we do...

The joy?

It comes naturally.

Monday, February 13, 2012

The middle diagnosis.

Yesterday was February 12th. It came and went like any other day. We went to church. We went to my in laws. I helped B finish is big report. We had a beautiful dinner. We came home and watched Once Upon a Time as a family. We went to sleep.

But yesterday was much bigger than that.

Yesterday was actually the very day L was diagnosed. At the tender age of 8 years old, he would have been celebrating 6 years with Type 1 Diabetes.

We will find a way to celebrate this week, but it occurred to me, I've never told L's story in its entirety. I don't even know if I remember it in its entirety. But I'll try.

I know it was a Sunday, and it was two days before Valentine's Day. The night before my husband and I went out and bought each boy a box of heart chocolates. We had never given the boys so much candy on Valentine's day, due to the fact that J's insulin wouldn't tolerate it. But he had been on his pump a couple years, and he could eat what he wanted now...so we thought, "what the heck! They so deserve it!"

As it turns out, no one got the chocolates.  They sat in my  closet for months before I ended up just throwing them away.

Early on that Sunday morning L woke me up for some water. Three times.

When he came back for the fourth I said, "You better hope you have diabetes buster, because it isn't ok to keep waking up your mama for water." It was a joke, and at 2 he had no idea what I was talking about, but no sooner had the words left my lips when Ryan grabbed my arm. We both knew in that moment that we needed to check his sugar.

It came up 220 something. We looked at each other in shock. I scrambled for the phone to call my endo. I was hysterical. Our regular endo was on Maternity leave, and this one was very blunt.

"Yes, he definitely is Type 1 now. I don't know why you are so upset. It is what it is."

"HOW can you know that from one reading? You don't know that! Stop saying that!"

"Go in this morning for blood tests, we'll see how far down the road he is."

We went in and tests only slightly confirmed what we feared. But here is the kicker...his blood sugars went right back to normal the next week. And the next.

And we went into denial...big time.

As long as we didn't feed him any carb bombs, his sugars were perfectly fine. Once in a while we would get a wonky one. Once in a while a 300...but then it would disappear and all would be well. The scariest part of this time was the lows. More than highs, we would see lows. He would get shaky, sweaty and scared and we would give him some juice. His pancreas was confused...it would help out a little too much when there was a high looming. It made me wonder if he wasn't type 1...maybe he was just hypoglycemic.

You can imagine the roller coaster ride I was on. One day I was sure he was Type 1. The next I was sure he was not. Until a few months later when he got strep throat. His throat closed and he wasn't getting enough oxygen...they rushed him to the hospital and he was put on what I assume were steroids.

Diabetes and steroids don't mix. He needed insulin immediately. His blood sugar went through the roof and there in the hospital it was realized...we have two boys with Type 1 Diabetes.

But here is the thing. We were all so relieved that we didn't have to live on that particular is he/or isn't he roller coaster that we took off running and ready to battle. There wasn't so much depression as there was determination. J admitted that it was nice not to be alone. He felt so guilty about it, but he felt closer to L despite it all. He would even check his sugar for us, and get his site changes done first to show L it was, "No big deal."

Also, L was a couple years older than J when he was diagnosed. He could communicate when he was hungry and he could communicate that he was thirsty. It was much easier altogether this time around. We knew we could do it.

And we did.

Now B's diagnoses...number 3. I didn't handle that one as gracefully. In fact I pretty much lost it.

But that is a story for another day.

I am so thankful that we have L in our lives. He is so much fun, and is the biggest sweetheart. He is unique, and innocent and everything you would want in a friend.

He is adored.


He is my hero.

Thursday, February 9, 2012

The deep-down-to-my-soul ugly truth.

I always try to be totally honest. I mean, is there any other way to find healing? Blogging helps me get to the heart of what I feel deep inside. Only good can come from that...I hope.

I begin typing today with no map on where I am going. Only the realization that everything is making me cry these days. Statuses on facebook. Blogs. Videos. If it references diabetes, inevitably...the tears come. They aren't harsh tears. They are soft, they are real, and they are all the time.

It is my goal today to get to the heart of that. I've been asking myself, why? Why am I getting so upset, so easily.

But sitting here in this moment, I think I've been asking that to myself all wrong.

I think a better question is, why am I touched so easily by what I read?

Why does it hurt today more than any other measure of time before?

Maybe because the boys basals are still a bit wonky. When things are not smooth sailing the reality of this disease bleeds into my emotions.

Ebbs and flows.

But I think there is more to it.

My boys are growing at an unbelievable rate. They are changing, and with those changes come memories of how things used to be. Remember when?

I think it bothers me that our family doesn't have a "remember when there was no diabetes." It feels like it has been around since forever. We had only started our family when J was diagnosed. He was a baby. And now he is a teenager, and before I know it he will be gone, and married, and starting a family of his own.

Which brings me to something that is making me sob as I type. I read on the ADA website, that the chances of my boys having a child with Type 1 Diabetes is 1 in 17.

That is doubled if they are diagnosed before the age of 11.

All my boys were diagnosed before the age of 11.

In fact, all of them were diagnosed before the age of 6.

The thought that more people that I love will have to live with this disease infuriates me.

I take my lot happily. I have no complaints that there are 2am checks and countless set changes and phone calls from school. But would I ever...ever...wish this worry on one of my boys?

Never. They have enough worry as it is.

They all want big families. They talk about it all the time, and more than anything I want that for them.

I would never tell them not to, or even insinuate they shouldn't. I had them, and I am so so thankful I did. Would I have them again if I knew what I know now. You bet your mySentry I would!

I just wish it wasn't a never ending cycle. I wish they could achieve their greatest dreams without heartache.

But in writing this I realize that everyone has their heartache. Diabetes or otherwise. Who am I to wish that they have only happiness in their life? I don't think perfect lives exist...and I truly believe that without knowing sadness, we cannot know joy.  I want them to know a lot of joy.  Honestly though, one in seven sounds so nasty.  It really is less than a 12% chance.  That is an 88% chance that their children won't have Type 1.

Man I hate percentages.  They are useless.  You just never know where you are going to fall.

I guess the reason it upsets me so much, is they already have enough to battle. What else is life going to throw at them? I can't bear to think about it.

I can't bear it.

Well there it is. Depressing, deep down to my soul thoughts, all wrapped up in a not so neat bow.

I would like Type 1 Diabetes to end here thankyouverymuch. In fact, I think I'm ready for a cure now.

There. I said it.

Don't shoot the messenger...you know you wish for it too.

Tuesday, February 7, 2012

The rest of the story...

Last week I posted about L's mysterious lows. I thought it was a fluke. I thought I could ride it out. But on day 6 it became blaringly obvious that it wasn't safe to sit idle anymore. I had to change basal rates.

For the record...I hate HATE HATE changing basal rates. I only find success if we are constantly battling highs. If we are battling lows, it has always worked in our favor to just ride it out.

My gut said, "ride it out!" But seeing another 40 stare back at me on Friday pushed me over the metaphorical edge of my sanity. (Which admittedly is very easy to do, but doesn't change the fact that those kind of numbers are just too dangerous.)

Must change basals.

L has a higher basal rate between 4am and 10am. I'm sure this is in place to battle the breakfast spike, but for whatever reason I decided that this would be the rate to change. I brought him down one little step. ONE. A small change, but one I hoped would domino throughout the rest of the day. The lows were starting at 9:30am-ish, so I thought I'd nip it all in the bud.

I made the change Friday after school which I knew would negatively affect his weekend. L always boasts much higher numbers on the weekend.

He was through the roof all weekend long.

"GOOD!" I said. Monday he will be perfect...I just know it! (I'm crazy that way.)

But alas, Monday yielded an epic fail. I bolused fully for breakfast and that spike got the best of us anyway. He was even 400 after school.

I shook my head and grabbed his pump. "We are changing your basals back. But instead of going until 10am, I'm going to cut it off at 8am."

So here it is. The moment of truth. It is 9:30am on Monday. Every minute I don't get a call is a victory.

I will now wait.




I have received the call. The snack recess call. The one of two calls I should receive from him while he is at school. (Last week we averaged 6 calls a day. FUN!)

He is 143. Woo to the freakin' hoo!

A little side note: Yesterday I had the stomach flu. Just me. Which is really weird, as I always get my bugs from the boys. Maybe there is an answer to our unsolved mystery. Maybe L had a bug last week and wasn't absorbing his food correctly.

I feel relief that we might be on our way out of the crazies, but at the same time I know...I KNOW...more crazies are waiting just around the corner.

It wouldn't be Our Diabetic Life without them.

(For those of you who do not pump and need clarification...basal insulin would be the long acting insulin you use. Our pump mimics your basal insulin by giving small puffs of the short acting insulin all day long. My boys have three different basal rates programmed into their pumps to counteract growing patterns, the exercise they have at school, and the morning spikes. Bolusing is the act of giving a short acting insulin when one of my boys is high, or is eating carbs.)

Wednesday, February 1, 2012

Unsolved Mysteries.

As every good mystery does, this one begins with a puzzling scene...

A boy checking his sugar 20 minutes after eating lunch and seeing a 47 blinking back at him. He shifts his eyes to see if anyone else can see the ghostlike numbers on his monitor.

He wonders if he is imagining it.

He checks again, just to make sure.


He fumbles for his cell phone and calls his mother. She'll know what to do.

She is speechless.

"Mom? ... Mom?"

"I'm sorry honey, I'm here. Eat a bag of fruit snacks AND an apple juice. Do you think your tummy can handle that?"

"No problem!"

The scene switches to the mother. Even though she sits perfectly still on the couch, it is evident that her mind is working at lightning speed trying to calculate how much insulin is still in her dear little boy's system.

He'll call her soon. He always does.

But as an hour elapses she realizes that the call is not coming, so she grabs her coat and rushes across town to check on him herself.

As she drives by the school the landscape of the playground catches her view. There she sees her son's class having "free play." Children are running. Children are bouncing balls. Children are metabolizing much of the sugar in their body into energy.

She knows her son doesn't have enough sugar for that kind of energy.

She parks and walks at a fast clip towards her son's classroom. She enters it and grabs his blood sugar monitor...as she walks out the door she sees the class making their way back in.

His finger didn't stand a chance. She grabbed it with a swiftness that only a worried D mother could muster, and in seconds had the blood sugar confirmation in her hand.


Before her son even knew what was happening she began stuffing food into his mouth. More fruit snacks. More Apple juice.

The rest of the afternoon and evening consisted of an uncovered banana after school, and uncovered donut, and then dinner where she bolused him less than half of the carbs that were consumed. The nighttime yielded more uncovered snacks and two temporary basals of zero for an hours time each.

He woke up the next morning 95 and has been fighting lows the entire day since.


This has happened before, and it has happened many times to my friends. When they reach out to the community and ask, 'why,' I always respond with the phrase, "Diabetes hardly ever makes sense...and trying to figure out why will only make our brains swellier."

But when one is in the thick of this mysterious conundrum, one really has to say...WHAT THE WHAT! WHY THE WHY! HEAVENS TO BETSY, SLOW THIS TRAIN DOWN!

Unsolved mysteries gather and multiply throughout our community every day. Diabetes is math. And math SHOULD make sense. But our bodies are so much more complicated than ratios and hard numbers. Our bodies are miracles, and it is blaringly obvious that as a human community we haven't figured out all the subtle nuances our bodies have to offer. If we pooled our money and hired the most talented detective alive, I'm sure most...if not all our unsolved mysteries, would stay just like that...unsolved.

There are a million and one reasons why these lows could be happening. Unfortunately, there are a million and one reasons why I'll probably never know for sure which reason it is.

In the meantime, I will SWAG my way through this episode and hope that we come out on top very soon.

Donut anyone?