Tuesday, April 21, 2015

Cancer: The New Battle

I have so much to be thankful for . . . yet a long road ahead of me. Though I would love to expound on everything and completely delve into the details of my recent diagnosis, I am going to attempt to make this short, clean cut, and as simple as possible.

Pretty much, a week ago I went to the doctor's office for a suspected labrum tear. I had been having severe pain since December. To make a long story short- I am facing something far more difficult than I had anticipated.

The doctors found a large mass in my shoulder. The doctors are looking at this as an aggressive type of bone cancer- most likely Ewing's Sarcoma. Although there are three different types of cancer they are considering, due to my age, the size of the mass, and the aggressive nature of this mass- Ewing's looks to be the most likely diagnosis.

Today we were able to develop a game plan. This Thursday I will have my PET scan to determine whether the cancer has spread, or is contained. Next Monday, I will be heading back up to have a surgical biopsy. My doctor will remove both a section of my bone and the mass. They will also be installing the port for Chemotherapy during the surgery. Hopefully we will have the results of the biopsy by next Thursday. They will be treating the cancer with radiation, Chemo, and surgery, chemo again- and finally reconstructive surgery to repair the cancer-eaten bones. (If it is positive for Ewing's Sarcoma)

So what do I say... How do I process a diagnosis of an aggressive cancer only 2 years after my diagnosis of T1D? How do I cope with this? 

Honestly, at this moment, I can't. All I can do is depend on the strength that only God supplies. I'm in a blur... I'm obviously still in shock... And I'm still scared to death at the thought of trying to balance this all along with Type One...

Yet I think about a few verses that have really comforted me during these times:

"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. 
 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ."

 II Corinthians 1:3-5

God is allowing these trials in my life for a definite reason! I know that I can trust Him even when my life is turned upside down.

I would ask that you please pray for me as I will be starting treatment very soon after the biopsy results come back. 

Also please note that I have comfort in these three things:

1) An amazing support group of praying friends all around the world
2) The fact that I have it, and not anyone of my siblings (I wouldn't want it any other way)
3) The peace that God is providing for me at this time

I promise to keep you updated! Thanks again for all your kind words of encouragement and prayers!

With much love,


Thursday, March 19, 2015

Hannah's Update

First of all, we could not be more thankful for such advanced healthcare that we can and have received. The ER staff was amazing, informative, and reassuring. 

Hannah came down with a stomach ache yesterday at school. From the moment it really hit- it went downhill quickly. She started throwing up at school, so my mom went ahead and took her home. 

Now before I go on, this is why this has all ruptured into a fairly intense and problematic situation. Due the fact we get to constantly fight this relentless disease, two major problems surfaced within hours. 

Hypoglycemia and DKA

The first of these came faster than we expected. By the time they got Hannah home, she was still vomiting. After testing her BG she was 71. (The one thing I am thankful for- is that we have dealt with lows and vomiting before)

This is when the glucagon shines. 

We went ahead and gave her her first injection of glucagon and within 15 minutes she was up to 121- the only problem is that this made her vomit again. By this point, we're concerned with dehydration, ketones, blood sugar stability, and another low. Sure enough, the next low came in at 90*. After a glucagon dose- most often we have seen blood sugars in the 300s due to the effectiveness of the shot. Seeing she is 90 and still vomiting, we went ahead and injected a second dose to prevent the ever-so-close low BG.

(*Tip: If you inject glucagon, the most common side affect is super high blood sugars! Glucagon is a hormone that triggers the pancreas to release sugar. It is the fastest way to address critical lows and is highly effective... life-savingly effective)

So this is when we went ahead and called our Endocrinologist. She ordered Zofran to counteract the nausea and vomiting. She asked that once Hannah quit throwing up, we should probably test for ketones and see if the Zofran does any good. If she threw up again, the advice was to take her to the ER so they can start IV fluids and keep her hydrated.

Of course, the zofran did little to nothing and she was vomiting again. After a urine test, Hannah was burning moderate-severe ketones. (Possible sign of DKA)

 We went ahead and took her in and they were able to hook her up to fluids and more anti-nausea meds. Blood sugars were about 200s so they weren't too concerned with the DKA side of this. After a few hours in the ER, they discharged her and want us to be sure to push fluids.

So ALL of that to say, Hannah had an okay night. 
She has thrown up only once since the ER. The best she can do for fluids, is suck on ice chips. We are praying that this will tide her over till she can muster enough strength to not vomit after sipping on water. Hopefully, after her resting- she will turn the corner. Blood sugars are nicely hovering in the 200s (pretty much where we want her for now), and she is sleeping soundly.

I know I have typed an awful lot... I usually don't like breaking it down so much. However, I felt it important to see just a glimpse of what a simple flu virus can do when combined with T1D. We are very fortunate that she didn't pass out and also that she didn't go into DKA. I think we have weathered the worst of it... I sure hope so...

Please keep her in your prayers-

Thanks much!

Saturday, March 7, 2015

Dealing with the Mis-Informed

I don't understand where some people feel they are obligated to express their opinions in an unthoughtful manner. I don't understand if the issue is that they simply don't understand, or perhaps they think they understand something they really don't understand. 

So what do I mean? 

In the 5 years our family has dealt with Type One Diabetes, we have experienced and talked to people who have experienced this ever-so-common thinking:

"Type One Diabetes? Well, you know it could be much worse. You're so fortunate it wasn't cancer!"

So, whats the point? That's what I keep thinking...

Now before we delve into this sensitive subject - cancer is an extremely BIG deal! My mom had cancer, and that journey was not easy. We have friends and loved ones who have battled the heartless disease - and my point is not at all to minimize cancer.

Rather, my point is to break down the thinking behind the statement. In a way, it helps me to work out why they would say it - and in turn I think it will help other T1Ds that I have talked to about this subject. 

Two possible but different approaches could be used for this mentality:

1) It is a statement of coping. It's trying to help relieve the pain of your problem by putting it into perspective. Honestly, I think this is a great approach. Perspective is what makes almost any hardship in life bearable.

With this approach, the person who states "It could be much worse" is genuinely concerned with the pain that your or others is/are experiencing. Even through our diagnoses, our "Perspective Phrase" was,  "At least we are alive - 100 years ago and our parents would have buried their three youngest children."

2) It is a statement of ignorance. This approach can come across as extremely heartless at times. Now, I always have to remind myself that the people who are saying it are probably misinformed, and would never want to hurt us or any other diabetic. . . but they do. 

These are the kind of statements where "It could be much worse" translates to "This isn't as big as a deal as you're making it." I'm not here to open this up and shred the people who say things like this. For me, this states nothing but the lack of education of the speaker.

My solution to this bluntly arrogant and most likely misinformed statement is this - it's time to stop being silent. I am going to post just five simple facts about Type One Diabetes that make T1 a big deal. That prove this disease is not a "hyped up show but rather a deadly reality that we get to fight every single day. 

"5 Fast Facts for the Mis-Informed"

1) 20 Minutes Is All It Takes
Low blood sugar is the immediate and potentially fatal danger of Type 1. Blood glucose levels around 30 can cause a person to become unresponsive, resulting in a rapid succession of seizures, and ultimately followed by a coma. Any blood sugar below 70 should be taken seriously and immediately treated with fast-acting sugar.

2) There is NO Prevention
Nothing a person did or did not do could have prevented the onset of Type One. No amount of healthy eating or exercise could stop the unknown trigger that causes the body to attack the islet cells within the pancreas. 

3) There Is No Such thing as "Stable"
 Despite the rigorous effort with which a Type One works, blood glucose levels may not "stabilize." Life with Type One means daily highs, lows, constant monitoring, insulin dosing, carb counting, and adjusting.

4) Insulin or Die
Before the discovery of insulin in the 1920s, those diagnosed with Type One simply died. The few "fortunate" were kept alive for a few extra months through a starvation diet treatment. Type One diabetics must take insulin every day or they will die. Healthy eating, exercise, or herbal remedies will never eliminate the need for insulin.
5) There is No Cure
Type One is a lifelong (chronic) disease that requires 24 hour care and treatment. Children will not outgrow Type One Diabetes or insulin dependence. Every day, for the rest of our lives, those with Type One must take insulin. It's that simple. It's that scary.
This information incredibly stated by "Get Diabetes Right."
I think this is one of my weaknesses in life: I'm a naturally defensive person. Whether stories from camps we've attended, the DOC (Diabetes Online Community), or my own siblings, I feel it is necessary to stand up and support any diabetic I meet. It's part of that mutual bond created through a disease we all fight.

That is why I felt it necessary to take the time to address this issue. If you have any comments or questions, feel free to ask! I would love to help in any way possible. 

Wednesday, February 25, 2015

Five Years Ago Today

Five years ago today, our little princess stepped into a world that she didn't know existed . . . to fight a disease she didn't understand. At nine years old, she had to grow up and take on all the challenges that Type One Diabetes brings. 

Five years ago today, our rose among thorns (one girl- four boys) slowly adapted to functioning as an organ that she couldn't see or understand. I still remember the nights we cried together, the times we wanted to take the shots for her, the days we wanted to lift the burden of diabetes off of her- and place it on our shoulders. The times it overwhelmed her- but never overcame her.

Five years ago today, my little sister began her life-long journey with Type One Diabetes. Unless you've experienced it- I don't expect you to understand from where we have come. The journey has been complicated on multiple levels, but Hannah is incredible! That is the beauty of this disease . . . it's complications, it's pain, it's complexity, it's grueling schedule, it's relentlessness- these things are what force us to stop depending on us. When we come to the end of ourselves, that is when we get to see just how amazing God is! The sufficient grace He provides is always there at the most difficult of times. That is when we get to trust the very One who trusted us with this disease!

Hannah has exemplified this truth many times. I have watched her through two completely separate perspectives. One side was from not having T1D and watching her. The opposite is now having T1D myself, and watching her. But this is the cool part. I get to see what many don't. I get to fight alongside her. I get to watch her tackle obstacles that others will never see or experience! It's a special component that constitutes our Type One Trio:

We are in this together. We are experiencing this together. We are fighting this together.

So today, we celebrate a significant milestone for Hannah. She has broken into her 5th year with T1D. Hannah has proved what it's like to dream big and achieve anything regardless of this disease. This five year mark is just the beginning of her story, and we couldn't be more proud of her!

I love you, Hannah!

Saturday, January 31, 2015

Two Year Diaversary

It's been about a month since I last blogged. I know, it's sad . . . I feel badly, but I haven't had the "urge" to sit down and mull through all of my thoughts/ emotions. 

However, now, I feel that it might be an appropriate time to blog.

It has been two years . . . I know that every time we have a diaversary I say this: "Wow, 2 years feels like 20!". I repeat this statement, because it seems the best way to summarize an ocean of thoughts. Yet this time I won't stop here. Let's take a look at why 2 years feels like 20 . . . in pond form. ;) 

First of all, diabetes is a disease. 

I know right? Pretty obvious. The interesting thing is, it isn't all that obvious. It is easy to begin viewing this autoimmune, chronic disease as a temporary sickness - a sickness that will be gone in a few days, a few weeks, a few months . . . I think that's just one reality that I keep missing: It's not going away. 

Internally, I seem to wait for that moment . . . the moment when I wake up- and Type One is gone. When my life is back to simple. When I'm not constantly trying to be a "move ahead". When I'm not dealing with the constant side effects of a disease that easily distorts even the simplest of tasks. 
(I could easily expound here, but I'll move on) 

Second, diabetes is a constant re-addressing of problems.
Whether the problems are old or new, hard or easy, complex or simple . . . they have become commonplace. Every day we address these same things. Yes, you get better! Yes, you get stronger! Yes, you learn to depend on God rather than yourself! These are essential parts of adapting to this disease, but please understand that doesn't make it easy. Addressing a blood sugar of 50 still makes your heart race. Dealing with a blood sugar of 420 still zaps your mind and body. Working around the clock to compensate for a disease-ridden pancreas still drains your emotions. 

Finally, it hurts. Another obvious thought, perhaps. 
Yet again, there is still more to this simple statement. By "it hurts," I mean this disease wears down. It is an emotionless, careless, painful disease that never gives a break. It doesn't come in spurts. There are no good streaks. I feel this idea is perceived by many to be a fact. Let's stop for a moment and evaluate this statement. In order for a "good streak" to be possible, one would expect less problems. But is that really possible? 

To me, this isn't really about a good streak, it's about survival. Though I get to see great blood sugars, that doesn't mean the reality of this disease stops. A blood sugar can drastically change within thirty minutes! Just because a number "looks great" doesn't mean that problems are insignificant. I hope this makes sense: it is so important. Many times I have talked to other families that fight T1D, and many many times they repeat this fact. Maybe the easy explanation is this: blood sugars are not a grading scale; they are a map. Just because this week was a bad week does not mean that next week will be better. There is nothing definite with Type One. It's not that simple .... ever. 

So how do I conclude? How do I explain a disease that has completely overturned my family's and millions of other T1D family's lives? How do I sum up two years of adjustment and pain?

I would certainly say this: I don't have all the answers. And frankly, I have yet to meet anyone who does. I don't fully understand why this has to be so painful, but again, I haven't met anyone who does. I don't know what the following years of T1 hold and yet again, I haven't met anyone who does. 

So simply here's what I do know. I know that strength is found in the love and support of family and friends. I know that security is held by the only One who understands this disease, and my future: God. And I know that everything will be all right. Yes this wasn't the most "upbeat" post I have written. But it is honest . . . that's just one cool part about writing my thoughts now. 

A few months, years, decades from now

I'll look back and reminisce on where I have been...

and where I have gone.

Sunday, December 21, 2014

Diabetes4Dummies: Food Police!

Hey there! 

New Christmas Special Diabetes for Dummies video! 

Check it out here! :) 

Thursday, December 4, 2014

I Don't Always Expect You to Understand

Unless you are a Type One Diabetic, or live with a Type One Diabetic, I don't expect you to understand what living with T1D is like.

I don't expect that of you - because I can't expect that of you.

I can't expect you to understand what it's like to wake up at 5 AM in the morning because your blood sugar is low... I can't expect you to understand what it's like to rip a site out of your arm while putting on a shirt... I can't expect you to understand what its like when one of our blood sugars is 400 and we can't fall asleep... I can't expect you to understand what its like when one of us wants to go to bed, but a "No Delivery" will have us do the opposite... I can't expect you to understand the emotional toll that diabetes takes...  I can't expect you to understand the fact that this battle is 24/7, a battle with a careless disease that never stops...

So why say all of this? Why force you to read something that may seem "wordy" and maybe even "empty?"

The reason I do is this:

In this fight we can't win our reality does not stop, and the pain does not subside.

It seems that the longer I'm in this, the more and more people expect us to fit in with their normal, to give of ourselves, or to be more "involved." It seems that the expectations continue to rise because "obviously" Type One gets easier.

Here's the truth- who we were died with our pancreases. 

It is this way for every T1D: it's not optional. There are things in life that are not easy to go out and do. You can't do anything without preparation, can't go anywhere without plans, and can't accomplish anything without a strategy.

Is this bad? No... this is our "normal" - we have to adapt.

I could go on - use more example and expound on various T1D issues - but I won't. 

I'm simply making one request: please be caring.

Caring doesn't mean you have to understand: it doesn't mean you have to do or physically say anything. It just requires you to think.

Think before you speak, and think about just a snippet of what T1D entails. 

I'm not asking you to understand Type One Diabetes . . . I'm just asking you to care.

With love,

The Type One Trio