Wednesday, May 13, 2015

First Chemo Down: Bad and Good News

Hi my friends, fellow-cancer fighters, and readers:

It's me!!!

It has taken me a full three days to get through my first round of chemotherapy. Not to mention the surgery in which my chemo port was installed and also when my bone marrow biopsy was done.
I still feel a little loopy but I wanted to go ahead and send out an update!

So there's some good news, and some bad news.

The good news, is that the cancer has not spread throughout my body! 

However, the bad news is that the cancer had spread to my lungs. There are multiple small tumors, and one large tumor in my lungs. This is another blow from the back- mainly because the PET scan seemed to show that the cancer was localized. Sadly, that is not the truth.

The gameplan from this new finding is going to entail more intense chemo and radiation. Also, at the last 3 month period, my body will be in the hospital for a whole month to severely attack the remaining cancer.

Please pray for my family and I. We have a year-long battle ahead, and
"bad news" never helps. 

All I can rest in, is that God knew this was going to spread far before any of us. 

Thanks Again! :)  


Monday, May 11, 2015

Guest Post: Trying To Breathe

Please enjoy the following guest post written by Kate Skidmore, a dear family friend.

Written by a listening ear for the Hatchetts as they struggle for the words to say.

Dear friends and family and friends of family and family friends and well, you get the picture...

Please know we love you. Please know we need you. Please know we covet every prayer on our behalf. Like a ship at sea raises flags to communicate with other boaters in the water, we too need to raise our flags to communicate with all those that surround our lives at this time.

I don't know what color tomorrow's flag will be but today's flag is Delta. It looks like this




And it means: I am maneuvering with difficulty - steer clear

On our land-lived life, this looks like granting space to a mom and a dad and the five kids living under our roof, hunkering down together as we learn to breathe once again in our new normal. Keep in mind that our reserves are already low due to three T1D diagnoses and daily management, major changes in the past year too numerous to recount, and now an aggressive bone cancer diagnosis.

The hard part for us, and for you, is sorting out what is helpful and what is overwhelming as people reach out and into our lives to offer support. The only thing I know right now with the DELTA flag flying is that we need your offerings of support from a distance as we focus on trying to breathe. 

Love us through the mail, the blog, through prayers, send pictures that make us smile, or jokes to make us laugh, or songs, or poems, or words of truth and hope. Direct our hope to the Lord. Beg God for his favor on Caleb and our family. Pray for a miracle of healing. If you choose to join us and give anything during this time please give with an open hand with no reciprocation expected. Please don't feel offended if we give access to one support and turn away another. Expected people may not have access while unexpected people will. Please give grace as we attempt to navigate these treacherous waters. Right now there are seven people on the boat trying to breathe. When we are ready to fly a new flag, we will let you know.

Helping is a card...instead of a call.
Helping is a comment or a like on Facebook or Caleb's blog...instead of stopping by.
Helping is honoring the preset visit times and leaving without us having to ask.
Helping is recognizing that managing our energy and time will look different than what you might think we need.
Helping is allowing us to take in your gifts and offerings of support on our own timeframe. 


Today the Delta flag may be flying but tomorrow we may need to call an "all hands on deck."

Thank you for loving us the way we need to be loved right now.

Monday, May 4, 2015

Numbing Myself

 (Dad and I, exhausted after D-Day (Diagnosis Day))

A lot has happened to me in the last three weeks.

I went from an ambitious nursing student with goals of specializing in Pediatric Endocrinology- to a cancer patient.

I went from a Type One Diabetic still overwhelmed with the enormity of a chronic disease- to a Type One cancer patient. 

I went from a 19 year old with big exciting plans on life- to a cancer patient stripped of my own ideas.

These are the realities I am trying to wrap my mind around. I have people constantly asking, "How are you?", "You doing okay?", "How are you holding up?". Honestly, I don't really know. I'm trapped in a blur of a new reality. A new battle that has erupted and blindsided me in the middle of my journey as a college student. 

It's hard to process this all. It's hard to accept that I'm only 19 and don't feel anything near ready to tackle another ominous disease such as cancer; let alone a cancer that demands a year of Chemotherapy. A year. Thoughts of where I could be in the Nursing program haunt me when I try  thinking ahead. 

So how am I coping? How do I even make sense of it all? How do I make sense of Ewing Sarcoma, or chemotherapy, or the replacement of my shoulder after the fight with cancer?

Well I have found the key to it all is to numb myself to myself. 

Numbing myself occurs when I stop myself from thinking ahead. When I prevent myself from panicking about the terror of the unknown. . . the endless possibilities and pathways this journey could go. I tend to do that a lot, think ahead, process, prepare. Yet God has promised only enough grace for today . . . not tomorrow, not next week, month, or year! Only today. 

Also, I have found that to numb myself- I have to "infuse" myself with Scripture. If you haven't had the opportunity to truly enjoy the riches of God's Word than you may be completely lost here. So what do I mean. When you have a personal relationship with the God of the Universe, you are given the discernment and understanding to be completely immersed in the comfort that it provides. I have found that the Bible has been more real to me now than ever before. Beyond a doubt II Corinthians has spoken to me the most! The reason for the depths of II Corinthians is the truth that God comforts us in our greatest tribulation, so that we can comfort others- with His comfort!

If you didn't quite get that- here's the simplified edition. ;)

I want to use this terrible, overwhelming, confusing, difficult and ominous diagnosis of Ewing Sarcoma to do one thing- be able to minister to others around me.

Everybody relates to cancer. And the worst thing that I could do is squander this opportunity God has given me- in my own grief and pain.

Now am I grieving? Totally. Am I hurting? Completely. Am I going to hurt more? Positively. 

But here's the focus, I am given the chance that very few get. An opportunity to reach out to others that are grieving and hurting- and to show them the comfort that God can only instill. 

Thank you so much for all your prayers and amazing support! I look for this year to be extremely difficult, but I couldn't have a better support group, or more powerful God!

Love to all! Will post again soon, hopefully! 


Thursday, April 30, 2015

Ewing Sarcoma

So we found out a lot today. 

As one could say, "we've been through the ringer." Between information, statistics, and an overwhelming battle plan - one could correctly suspect that we are spent. 

Now I sit here trying to summarize the helpful, "encouraging," useful information to share with you all (my incredible support team... that's you!)  ;-)

First of all, it is a question no more- I have Ewing Sarcoma.
What is Ewing Sarcoma? 
It is an aggressive, rare (1% of all pediatric cancers), type of bone cancer. It forms within the bone marrow and then "breaks out" forming into a tumor of soft tissue. There are roughly 200 cases of Ewing Sarcoma diagnosed within the US every year. 

I have just joined the 200.

So where do we go from here? I was transferred to the UW American Family Children's Hospital as of today. The best news of all is that the cancer is localized within and around the tumor. However, I will be having more tests run this coming week. The following Monday I will be going in to have my chemo port installed, a bone marrow biopsy done, and will begin my first chemo treatment that evening. 

So here's the real hum-dinger.

I expected maybe two or three months of chemotherapy. But I was slightly off in my calculations. According to my Oncology team, I will have 36 rounds of back to back treatment. Within these rounds, 8 of the blocks will vary from 5 days of Chemotherapy - to the smaller treatments where I will be held at least two days for one day of treatment. My doctors advised me to plan for a year of chemo... between Type One Diabetes, low white blood cells, low red blood cells, low platelets, low blood sugars, high blood sugars, high fevers (you get the point) ... it will not be a smooth 40 weeks as planned. Those 40 weeks would have to be flawless. 

So here's the analysis: this cancer can be beaten. If we nip this in the bud, I could possibly have this behind me for the rest of my life! According to the PET scan, there are no signs of spreading away from the tumor. This is a big answer to prayer! Yet again, we really won't know the full effectiveness until they do further testing in five years.

This cancer is also extremely aggressive, mean, and a lot like Type One Diabetes... selfish. In order to kick this thing, we have to smack it around with some serious and lengthy chemotherapy.

So in a way there is good news, and in a way there is bad news. Depends which side of this coin we are gonna look at.

Thank you so much for your prayers! They are deeply appreciated.

(Many friends have asked to help at this time. My Aunt Jenny has set up a fundraising page to off-set some of the medical expenses that are quickly mounting. Thank you so much. Click Here

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,

Caleb




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.