A Sister Left Behind

This post is #48 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

April 2, 2008

When a child is diagnosed with cancer, it has a profound impact on everyone in the family.  Our younger daughter Bethany actually got sick before Hannah did.  She had been diagnosed with mononucleosis just a week or so before Hannah's first symptoms began to appear.  In fact, until the moment that an MRI revealed a tumor in Hannah's brain, I was more concerned about Bethany's health than hers.  She actually seemed far sicker than Hannah at the time.

But of course, when we found out about the brain tumor and were launched into the roller-coaster world of cancer, 12-year-old Bethany was left behind.  Life as she knew it changed dramatically overnight.  Her Mom, Dad, and big sister who had always been there for her were suddenly gone, and she often found herself in the care of her grandparents, friends' parents, and neighbors.  And if we weren't physically absent, we were distracted with Hannah's medications, radiation appointments, and blood counts.  Hannah's health became our primary concern, even as Bethany continued to deal with medical issues of her own.

We are so grateful for all those who reached out to Bethany during this time in our lives.  Lots of folks stepped up to get her where she needed to go, make sure she was fed, and give her some much-needed companionship.  I don't even know who many of those people are ... but their kindness will never be forgotten.

Here's the text of an email I sent ten years ago today ...

This actually will be more of a Bethany Sullivan update than a Hannah Sullivan update. She had her appointment this morning at the Infectious Diseases clinic at Children’s Hospital. It was a bit frustrating at first, because they had lost her file, and had no record of her having an appointment today. By the time they got all of that straightened out, it was nearly two hours before we finally saw the doctor. The doctor did a thorough exam, and took copious notes about all of the symptoms she has had over the last two months. She told us that the blood tests which had been done previously had been negative for the two main causes of mono symptoms, Epstein-Barr virus and Cytomegalovirus. She told us that there are two other viral infections which can cause mono symptoms, but they are not very common and difficult to test for. She discussed with us a variety of other illnesses which can cause fatigue, fever, abdominal pain, etc. (there are LOTS of them!) and drew quite a bit of blood to be sent off for testing. She said the results will come in over the next week to two weeks, and she will keep us posted on the results as she receives them. She was pleased to hear that Bethany’s energy level has definitely improved over the last week or two, and that she is in school and keeping up with her schoolwork.

Hannah has had a good day today, with very little nausea or dizziness. Tomorrow will mark the halfway point of her radiation therapy! She continues to have a wonderful attitude about everything, for which we are very thankful.

Thanks again for all your prayers! God is good, all the time!

Jill and Brad

Better Than Okay

This post is #47 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Hannah really didn't get in trouble much when she was a little girl. She wasn't the perfect child, by any means, but she just really didn't disobey us very often. Except for one area, that is ... She quite often got up out of bed after being tucked in for the night. The first time she did it, we would gently, but firmly, tuck her back under the covers, explaining that it was time for her to go to sleep, and that if she got up again, she would be punished. Of course, we made sure she wasn't truly thirsty or sick or anything like that. Most of the time, she would go on to sleep, but some nights ... well, some nights she would push us to the limit, getting up over and over even when she was disciplined for her disobedience.

So, when we heard her come padding softly down the hallway one night when she was about seven years old, we thought it was going to be another one of those kind of nights. But when she lisped out the reason why she had gotten up on this particular night, we knew it wasn't the same thing at all. "I want to ask Jesus into my heart," she said ... and right there in our living room, with us by her side, she did just that. And a few weeks later, on Easter Sunday morning, our girl was baptized in a horse trough on the stage in the El Dorado city auditorium, where our church was holding services that day.

And that's what makes it all okay. Her cancer diagnosis, her suffering, her death. I don't like any of it ... would never have chosen it for my little girl ... would do anything to change it if it were possible ... I miss her so much it's physically painful ... but it's okay.

Because of what Jesus did for us at the cross, and because Hannah placed her faith in Him as her Savior that night in our living room, she is with Him today in Heaven. And one day, I'll be there with both of them.

And that's way better than okay. That's amazing grace.


Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?”  John 11:25-26

But what does it say? “The word is near you, in your mouth and in your heart” (that is, the word of faith that we proclaim); because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.  Romans 10:8-9 

Settling into a Routine

This post is #46 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 31, 2008

By this time, we had settled into a pretty comfortable routine of traveling to Little Rock every day for Hannah's radiation treatments.  Ten years ago this week was spring break, and our schedule was as follows:

Monday 3/24/08 - 11:00 appointment at the Hem/Onc clinic at Children's Hospital
                                3:20 radiation treatment at CARTI

Tuesday 3/25/08 - 1:40 radiation treatement

Wednesday 3/26/08  - 1:40 radiation treatment

Thursday 3/27/08 - 9:10 radiation treatment

Friday 3/28/08 - 10:40 radiation treatment

(Yes, I still have my calendar from that year.  Not because of what was going on that year, but because I keep my calendars from every year.  Don't judge. :)  )

Because it was spring break week, Bethany was able to accompany us to several of these appointments, which was a treat for both girls ... and for me.  We tried to have as much fun together as possible on these trips.  However, Bethany was still dealing with ongoing health issues of her own, as you can see from the email I sent out on March 31st ...

There haven’t been many updates lately, because, thankfully, there has been little to report. We saw Hannah’s oncologist again today, as we do every Monday, and he is really pleased with how well she is doing. Every Monday they will be taking blood, to make sure that her blood counts stay up while she is undergoing radiation and chemotherapy. Please pray that her blood counts will remain where they should be, because if they drop, we may have to stop the treatments for awhile in order to let her counts build back up before resuming. We would sure like to get these treatments behind us as soon as we can. Hannah continues to have some queasiness and even occasional dizziness, but so far nothing too bad as far as side effects from the treatments.

Bethany is still struggling with low grade fever, abdominal discomfort, and fatigue. She is having some new irritation in her eyes, possibly a recurrence of pink eye. Our primary care physician in Hot Springs has referred us to Arkansas Children’s Hospital, and we have an appointment there at 9:30 tomorrow morning. Please pray that we can get to the bottom of whatever is making her feel so rotten. I will send out an update if we find out anything for certain tomorrow.

Thank you again for all of your prayers, encouragement, and support. We continue to receive daily reminders (cards, emails, gifts, phone calls, etc.) of God’s love through all of you. It means more to us than we can say.

God is good, all the time!
Jill and Brad Sullivan

Hannah's Bucket List

This post is #45 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Photo credit: rubyblossom. on Visual Hunt / CC BY-NC

Remember the movie "The Bucket List"? It was released in 2007, and Brad and I went to see it on a very rare date back when it was in theaters. Morgan Freeman and Jack Nicholson play a couple of mismatched strangers, each diagnosed with terminal cancer, who end up sharing a room in the hospital. Together, they come up with a list of things they want to do before they die, and escape from the cancer ward to fulfill their mission. I wanted to see this movie because I found the concept intriguing. Of course, when we went to see it, we had no idea that our oldest daughter would be diagnosed with a terminal illness just about a year later.

The other day, I caught the end of "The Bucket List" on TV, and it got me to thinking. If Hannah had made a bucket list, what would have been on it? We never discussed anything like that with her, because we really never discussed the possibility that she might die from her cancer. Not that she didn't know ... she was sitting right there when the doctor told the four of us that she had less than a 5% chance of survival ... but after that day, we really never talked about it. After all, we knew that God could still heal her, if He chose to do so.

We did meet with the Make-A-Wish people, and she was approved to have a wish fulfilled. So we spent some time discussing what her wish would be ... and she was torn between a Caribbean beach vacation, or an RV trip to Yellowstone. We had taken a family vacation to Yellowstone the summer before she got sick, and the girls had absolutely loved it there. And she and Bethany had always thought traveling in an RV would be the most fun thing ever. But ... she was adamant that she did not want to do either of these things until she was done with her treatments.  She did not want to go to the beach without hair, and she did not want to travel across the country feeling sick.  So, we told the Make-A-Wish people that we wanted to wait.  She never completed her treatments, so her Make-A-Wish was not fulfilled.

But as I thought about what Hannah might have put on a "bucket list", I couldn't come up with a thing.  She was not the adventuresome sort, so skydiving would definitely have been out of the question.  She had no burning desire to see the Egyptian pyramids or climb Mount Everest.  She was never one to seek attention and money wasn't important to her, so I don't think she would have sought fame or riches.

After all my thinking, I could only come up with two things that Hannah might have included on her "bucket list", and those would have been to spend as much time as possible with her family, and to bring God glory through her storm. And I receive a great deal of satisfaction and comfort from knowing that both of those items could be crossed off the list as fulfilled.  One of her favorite things to do was spend time with her extended family ... grandparents, aunts, uncles, and cousins.  And from the moment of her initial diagnosis up until the very end, she was surrounded by those she loved.  As for bringing God glory, we still see the evidence of that wish on a daily basis.

Thank you, Lord, for a fulfilled "bucket list"!

Hannah's Facebook Profile

This post is #44 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

You can learn a lot about a person by looking at their Facebook page ... sometimes more than you really want to know!  Today I want to give you a little glimpse into Hannah's personality through her page.

Hannah started her Facebook membership in April of 2007, when she was 15, and a sophomore in high school.  At that time the majority of her statuses revolved around doing things with her family ... celebrating holidays and birthdays, shopping, hunting, and watching Razorback football on TV. The rest of her statuses were school-related ... homework, test grades, and Magnet Cove Panther sporting events.

After her cancer diagnosis, she posted frequently about her treatments, but almost always in a positive light.  I'll be sharing some of those as I blog through this year.  Her last post was on November 22, 2008, and said, "Hannah Sullivan is happy because I don't have to be isolated anymore!" (She'd been isolated for awhile due to very low immunity.)  After that, she accepted some friend requests and joined some groups, but she never posted again.  Her close-up vision was deteriorating rapidly, and it was just too difficult for her to type or use her phone.  Many, many wonderful people posted messages of encouragement on her wall over the months of her illness, and those messages will always be treasured by our family.

What's really amusing to me were the groups she joined during her time on Facebook.  Hannah was very politically aware and she was a member of the following groups ... I'm sure you'll be able to guess her political persuasion as you read them:

--Stop Hillary Clinton (One Million Strong Against Hillary) - This was during Hillary's first presidential campaign!
--Stop Barack Obama (One Million Strong and Counting)
--Mitt Romney Will Bring America Back
--Mike Huckabee for President 2012
--The Clinton Presidential Library Looks Like a Trailer House - This one makes me literally LOL!

I can only imagine what she would think about today's political climate!

In the "Likes and Interests" section on her Info page (where most teenagers put things like hanging out with friends, playing sports, cheerleading, etc.) she instead has three people listed: John McCain, Mike Huckabee, and Sarah Palin.  I promise you, we did not brainwash this child!

I thought these were some funny groups for her to join:

--I've Been Called Hannah Banana Several Times
--My Name is a Palindrome and I'm Awesome
--Hair Straightening Appreciation Society
--I Will Go Out of My Way to Step on a Leaf that Looks Particularly Crunchy

She was a member of two groups that were set up in her honor:

--We Love Hannah Sullivan
--Our Prayer for Hannah Sullivan

There was also a third group, which she never had the opportunity to join:

--Hannah Sullivan Is My Hero and Inspiration

Her membership in this group makes me sad:

--Class of 2010

And her membership in this group makes my heart melt:

--I Will Always Love My Momma

But what really makes me happy is what she has listed under her Bio on her Info page:

"I love Jesus, and I try to live for Him every day!"

Makes this Momma proud!  💕

Ten "Gifts" From Our Year With Cancer

This post is #43 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Cancer has taken so much from us .... and from so many others. It may seem strange to even think that it can give anything...other than pain and grief.  But God, through the mystery of His grace, can take something even as ugly and destructive as cancer, and bring some good from it.

So, in no particular order, here are ten "gifts" that our year with cancer brought to our family:

1. Cancer brought us a heightened awareness of the treasure we have in our family ... and an appreciation of every minute we spend together.

2. Cancer revealed the love and concern of our extended family, friends, acquaintances, and even strangers ... all of whom reached out to us in so many different ways during Hannah's illness (and since).  Cancer showed us how to receive God's blessings through other people, and has given us a greater desire to be a channel of God's blessing ourselves.

3. Cancer taught us about the power of prayer. Yes, we prayed for Hannah's healing ... and no, she was not healed as we would have chosen. However, we know that every prayer lifted up on her (and our) behalf was heard.  And we continue to feel the strength of those prayers as we live life without her daily presence.

4. Cancer opened our eyes to the heartache in the world around us. Our hearts are much more tender now, due to a heightened awareness of the heartbreaks those around us have experienced.

5. Cancer showed us (me, in particular - the control enthusiast in the family) that we are not in control.  When a member of your family is undergoing treatment for cancer, you never know what the next week, day, or even hour may bring. Cancer brought us to the point of releasing what semblance of control we thought we had, and placing our schedules and our lives fully in the hands of God.

6. Cancer helped us recognize the joy of an ordinary day.  Just time, spent together, enjoying the simple pleasures of life.

7. Cancer allowed us to spend more quality time with Hannah than we probably ever would have if she had been a normal teenager, busy with school and all its activities.  The hours we spent in the car driving back and forth to Little Rock every day, the time we spent at home when she was unable to go to school, and even the days and nights we spent in the hospital together watching Facts of Life reruns ... Those are moments we will always treasure.

8. Cancer brought some amazing people into our life. Something about a cancer diagnosis immediately bonds you with others who have also gone through the cancer experience. God has blessed us with friendships that will be life-long ... and this may sound crazy, but some of these people we've never even actually met!  Pretty amazing how God can do that, huh?

9. Cancer has given us a desire to serve God well right now, and not wait until sometime in the future...like maybe when we're less busy. (Does that time ever come?) Cancer has given us an eternal perspective and focus we didn't have before.

10. Cancer has filled us with a yearning for Heaven. Our ties to this earth have been loosened, and we are earnestly looking forward to the day when cancer is thrown into the lake of fire along with Satan and all of his angels.  That's where it belongs.  And our God, who will make all things right in the end, will be glorified forever.

Thank You, Lord, for taking something as hideous and painful as cancer, and somehow wringing a little bit of beauty out of it. And thank you for opening our eyes to see it, even in the midst of all the pain and grief that cancer has brought us. You truly are good, all the time.

Life Is Good ... ?

This post is #42 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Have you ever seen those T-shirts that say "Life is good"? They always have some kind of relaxation-inducing picture to illustrate that concept ... like a lawn chair and a glass of lemonade, or a pair of flip-flops and a beach umbrella or something. They're nice T-shirts ... they come in all different colors in sort of a weathered-looking fabric. Seems like I usually see them in sporting-good stores. I always look at them because I like them, but I've never bought one ... partly because I think they're a little pricey for T-shirts, but mostly because I'm not completely sold on the "Life is Good" sentiment.

Oh, there was a time when I wouldn't have thought twice about that slogan ... life was good, and always had been for me. My eyes had not yet been opened to the world of childhood cancer. Sure, I knew it existed. I had seen those St. Jude fundraisers on TV ... you know the ones. Of course, I always changed the channel really fast so I didn't have to look at those steroid-swollen children with no hair or eyebrows ... I felt bad for those kids, but I didn't know any of them. They weren't my kids, or my neighbor's kids, or my friend's kids, so it was easy to change the channel and blithely go on my way.

When we were in Gulf Shores, Alabama, a few years ago we went in one of those tourist trap stores. This one is called Souvenir City, and the door is shaped like an enormous shark's mouth. If you've ever been there, you've seen it ... You can't miss it!

As I wandered through the T-shirt section, I spotted a group of shirts that looked just like the "Life is Good" shirts from a distance. I walked up to look at them, and found that these were a little different. These shirts actually said, "Life is Crap" and had pictures like a tree falling on someone's car, or a guy hitting his thumb with a hammer. Some were kind of funny ... like one that had a picture of a men's restroom and a ladies' restroom. The ladies' room had a line of about five women waiting to use it, and of course the men's room had no line. Anyway, these shirts gave me a chuckle, and then got me thinking.

Life isn't always good ... but God is. Sometimes life is crap ... but God is always good. In his wisdom and sovereignty, He allowed our family to see and experience some of the more crappy parts of life. He took us beyond seeing young strangers with cancer on TV, to learning the names and faces and families and stories of many cancer battlers right here in Arkansas and beyond. It is such a privilege to be able to lift these families up in prayer, and to keep up with their journeys through the storms.

In John 9:1-3, the disciples questioned Jesus about why a man was born blind, trying to determine whether it was caused by sinfulness. Jesus replied, "Neither this man nor his parents sinned," and then He goes on to explain the purpose of the man's disability: "This happened so that the work of God might be displayed in his life."  Did you catch the "so that"?  The "so that" means that the man's blindness was not due to bad luck, haphazardness, or neglect. God had a specific, divine purpose for the man's disability. And today, some 2,000 years later, I believe that is still true. In His sovereignty, I believe that God allows the difficult times in our lives. But He will always, if we choose to allow Him, display His goodness through them.

So which shirt had the right message?  For me, it's a combination of the two. Life sometimes is crap ... but God is always good!

The Importance of Prior Preparation

This post is #41 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

There's nothing like a cancer diagnosis to pique one's interest in the subject of suffering.  I think that as Christians, we often assume that if we "do everything right", we should be immune from suffering and hard times. God should see all the good things we are doing ... going to church, giving our tithe, reading our Bibles, praying for missionaries ... and exempt us from pain and heartache. But I think most of us have figured out by now that it doesn't really work that way. So how do we keep our faith from falling apart like a cheap lawn chair when suffering or tragedy comes our way?

I think one way to keep that from happening is to prepare for suffering ahead of time. When I learned how to scuba dive, I spent a great deal of time in a classroom, watching videos, reading manuals, and learning how to use the equipment before I ever did a Jacques Cousteau off the back of a boat. And breathing through a regulator under water (a totally unnatural feeling) was completely different than breathing through a regulator in my classroom at the Scuba Doo Dive Shop. Without the prior preparation, it would have been easy to panic when taking that first breath underwater. But because I had been prepared, I was able to relax and survive that first diving experience. In the same way, spending some time consciously preparing for the suffering that will inevitably come into our lives enables us to survive it when it comes.

So how do we prepare for unknown future events?  Randy Alcorn devotes many, many pages to the importance of our worldview in his book If God Is Good: Faith in the Midst of Suffering and Evil. I love what he says about God's omniscience: "God knows everything, including every contingency, and He knows what is ultimately best in ways we cannot. God can see ultimate purposes and plans that we can't. He can know it is better for someone to die now rather than later: 'The righteous perish, and no one ponders it in his heart; devout men are taken away, and no one understands that the righteous are taken away to be spared from evil' (Isaiah 57:1). We have no way of knowing, for instance, whether a disability might be used to cultivate personal qualities that would more profoundly honor God and bring the person greater eternal reward in Heaven. Because God knows all things in the past, present, and future, God is uniquely qualified to know when to ordain or permit evil and suffering and when not to."

For me, just knowing that God is fully cognizant of the big picture and that He is constantly working out His purposes is a huge help to me in understanding suffering and its purpose. We would never, ever have chosen for Hannah to be diagnosed with brain cancer at the tender age of sixteen ... but in His total omniscience, He permitted that in her life.  Knowing that, and fully understanding that truth, makes it a little bit easier to face the absence of her physical presence in our family.  And gives us the assurance that her (and our) suffering will one day be fully redeemed. 

One Month

This post is #40 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 25, 2008

Today's post is the email I sent out on this date ten years ago.  The group of people who received our emails had already grown exponentially from the first one I sent on February 20, 2008.  I was amazed by how many people were interested in following Hannah's journey and who prayed for us throughout that year ... What a blessing that was (and still is)!

Today marks one month since Hannah’s brain tumor was removed, and things are going very well. Yesterday we met with the oncologist, who is very pleased with her progress, and today we met with the radiologist, who told us that the radiation treatments are also going well. Hannah has had a little bit of nausea, on and off, and some mild fatigue. She has completed nine radiation treatments, and has had eight doses of chemotherapy. She has not lost any hair, and so far has not had any skin irritation from the radiation. We are so thankful for all of these blessings, and for your continued prayers and encouragement.

God is good, all the time.

Brad and Jill

What Ifs

This post is #39 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

One of the constant battles I had to fight during Hannah's illness was a recurring chorus of "What Ifs". When we first found out she had a brain tumor, it was "What if the surgery causes brain damage?" or "What if they can't get it all?" Once she got through the surgery with no lasting complications and they indeed got it all, the "what ifs" changed to "What if the chemo makes her really sick?", "What if the radiation causes new health problems in the future?" or "What if her cancer comes back?" After the cancer returned, the "what ifs" multiplied exponentially...especially with the location of her new tumors on her brainstem and spinal cord..."What if she loses the ability to walk?", "What if she loses her vision?", "What if she starts having seizures?" or even "What if she doesn't survive?"

I reached the point where it seemed like I was spending all my time dwelling on the "What Ifs". And God had to gently remind me that this was not how I should be spending my time. Instead, I needed to give him the "What Ifs" and begin savoring every moment I had with Hannah. Not that it was easy ... it was not easy at all ... and it required a continual, conscious decision to put the "What Ifs" into His hands and live one day at a time. I had never really understood the concept of "one day at a time", and had certainly never lived it, until that point. As Hannah's health deteriorated, it became one hour at a time, and sometimes even one minute at a time. I really think it was that focus that made the last couple of months of Hannah's life not only survivable, but even, at times, enjoyable for us.

People often commented on our "strength" during Hannah's illness and death, but this is a misunderstanding of God's grace. What appeared to be strength was actually human weakness bolstered by total dependence on God.

A a few months after Hannah went to Heaven, we had the privilege of sharing her story at a church in Mountain Home, and after the service we visited with a gentleman who had lost his wife to cancer after many years of marriage. Our visit was brief, because there were many others waiting to speak to us that night, and a few days later, he emailed us to share a little more of his story. He ended his email with this statement:

"God, in His infinite wisdom, created us with the ability to survive these heartaches."

What a simple, yet profound statement!  I am so grateful for that truth ... I have experienced it in my own life.

Walking wounded we press on,

Our scars but badges of Your grace,

Our fragile frames Your dwelling place.

Our hearts renewed though strength be gone.

Jars of clay beneath a blow,

Broken to let your glory show.

~Author Unknown 

Compartments

This post is #38 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Photo credit: a killing word on Visualhunt / CC BY-NC-ND

When I was a little girl, my most prized possession was a tackle box full of plastic farm animals. Yes, that's what I said, a tackle box ... not full of fishing equipment, but full of plastic farm animals. As a matter of fact, I loved this tackle box so much I always kept it by my bedroom door so that if there was ever a fire in my house, I could grab it on my way out the door. (My mother is probably laughing as she reads this.) It was a big green tackle box, and after you opened the lid, you could grab the top tray, lift it up, and suddenly you had three levels of little compartments. I thought that was quite a feat of engineering. And in those little compartments, I kept all my plastic farm animals. I had compartments for horses, compartments for pigs, compartments for cows, compartments for sheep, compartments for chickens ... separated, of course, by mamas and babies, spotted cows and solid-color cows, brown horses and black horses, etc. And down in the bottom part of the tackle box, I kept all my little plastic fence pieces. I would spend hours playing with those little animals, and then meticulously put each one back into its place.

I don't remember how old I was when I finally stopped playing with my tackle box of animals ... but I've never lost my affinity for compartments. I love roll-top desks with all their little cubbyholes and drawers, and the Container Store is one of my favorite places to shop.

I like for everything in my life to be in its place. And up until February of 2008, my tackle box was in perfect order. All the little pieces were exactly where I wanted them to be...in nice, neat compartments where they belonged. And then Hannah's cancer diagnosis came along, turned my tackle box upside down, and shook everything out. And even now, ten years later, I'm still picking my little plastic animals up off the floor.  Most days I seem to have it pretty well together, and then there are days I feel like those little pieces are slipping out of my hands again.  I'm so thankful that my Heavenly Father is with me to help me pick everything up and put it back where it is supposed to go.  And I can tell that He's not putting all the pieces back in the same little compartments...and I think that's a good thing.

"And He who was seated on the throne said, "Behold, I am making all things new..." Revelation 21:5

The Miraculous

This post is #37 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

I am an avid reader of World magazine, which is basically like Time or Newsweek, but written with a Christian worldview. It is primarily a newsmagazine, but contains some op-ed type pieces as well. About a year after Hannah went to Heaven, I read an article titled "Age of Miracles" by Janie B. Cheaney.  Ms. Cheaney began the article by stating that "though skeptics characterize the Bible as a collection of fairy tales, miraculous events are not that common" and "He can prove that He's the one true God as easily as a man swats a mosquito. Why doesn't He?" She states that the answer to that question may have more to do with who we are than who He is. She points out that the reports of the parting of the Red Sea frightened the residents of Jericho, but only Rahab and her family changed their allegiance because of it. Even when fire fell from heaven and devoured Elijah's altar, the Israelites' zeal didn't last (I Kings 18-19).

Cheaney states that the Israelites shouting, "'The Lord, He is God! The Lord, He is God!' had as much staying power as shouting 'USA! USA!' at victorious Olympic events: a feel-good moment that may glow for a week or a month, but won't change a life." She points out that the manner of Christ's conception was known to only two people; His birth to perhaps a dozen; His healing miracles were often performed one-on-one, and often a warning was given to keep it quiet. Even for large miracles like the feeding of the 5,000, probably only a small fraction of those present knew for sure what was happening. The author's overall conclusion was that while the miracles recorded in the Bible meant a great deal to those directly involved, they generally didn't have life-changing effects on many others.

The day after I read that article, I went to Sunday School, and would you believe ... our Sunday School teacher talked about the fact that in general, miracles don't draw people toward salvation.

It seems like so many times since Hannah's death, I've heard about people who have been miraculously healed of cancer. A tumor has been found, an ominous prognosis has been given, and when the person returns to the doctor for treatment, the cancer is inexplicably gone. And while I'm truly happy for those people and rejoice with them that they don't have to go through radiation and chemotherapy, as I walk away I can't help feeling a little dig of "Why didn't that happen for Hannah?"

We and so many others were praying for that kind of healing for her, but it did not happen. During Hannah's illness, many well-meaning people made comments like, "What a testimony she will have someday when she is healed." Or, "Maybe God will do a miracle and just think how much glory He will receive through Hannah's life." 

Over the years I've wondered ... what if Hannah had been miraculously healed, like we so earnestly desired? Would her life have had the same far-reaching effects it has had?  Would lives have been changed and people saved?  Or would people have just gotten a warm and fuzzy feeling about God, which would soon be forgotten?  Perhaps her healing would have been dismissed as a misdiagnosis, or a fluke of nature.

I don't know the answer to these questions, and won't know the answers this side of Heaven. But it's interesting to think about ... and I know that in God's sovereignty, His purpose has been fulfilled for Hannah's life. And while we didn't get the miraculous healing we prayed for here on earth, we know she is eternally healed in Heaven. And when it comes down to it, what could be more miraculous than that?

It's All About the "We"

This post is #36 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 21, 2008

On this date ten years ago, Hannah made the following post on her Facebook page:  "I'm happy that I have had no side effects from treatment so far!"

Thankfully, she was right.  Of course, at that point, we'd only been taking the Temodar for two days and had had six radiation treatments.  But hey, so far, so good.

Did you notice what I did a couple of sentences ago?  I said "we'd" been taking Temodar instead of "she'd" been taking Temodar.  As I've been writing these blog posts, I've been censoring myself to avoid using the word "we" in describing Hannah's experiences, even though my default is to use the plural pronoun.  I just wasn't sure if most readers would understand.

As I've talked with many parents whose children have battled pediatric cancer (or other chronic medical conditions), I've found that "we" is typically their pronoun of choice as well.

It's always, "We had an MRI the other day and it was all clear!"  Or, "We spent last week in the hospital with neutropenia."  Or, "We're going to start a new kind of chemotherapy this week."  Or, "We only have ten more radiation treatments to go!"  Or, "We will be starting hospice care soon."

When a child has cancer, the entire family is involved.  An onlooker may see only the child receiving a chemotherapy drip or sleeping in a hospital bed ... but I can promise you, every member of that child's family are right there beside him.  It may look like the child is lying alone in an MRI scanner or on a radiation table ... but in truth, her mom, dad, and siblings are lying right there with her.

In a pediatric cancer battle, it's all about the "we."

When It Doesn't Feel Like Springtime

This post is #35 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

On this first day of spring, I wanted to share a post I wrote back in April of 2014 ...

When It Doesn't Feel Like Springtime

When our 17-year-old daughter, Hannah, was diagnosed with brain cancer at the end of February 2008, I remember being thankful that we were facing this challenge in the springtime. Somehow, seeing the blooming of the flowers and the fresh new leaves on the trees made dealing with the roller coaster of cancer seem easier. It made me feel that, no matter what happened, we had hope.

But when the "no matter what" became reality as Hannah left for Heaven in February of 2009, it seemed that even nature went into mourning. We have a beautiful dogwood tree on our property, just off our deck, and every spring that tree unfailingly burst into glorious bloom.

But not that spring ... Not a single bloom appeared on that dogwood that year. It went directly from bud to leaf, without flowering. Our neighbors' dogwoods bloomed right on schedule, but ours did not. I will never forget how God allowed that tree to mourn with us that year. It sure didn't feel like spring to us.

Springtime is not all blooms and butterflies, either. Along with the new life of spring comes throat-clogging pollen, rampant weeds, and in Arkansas, tornadoes. That's the way it is with grief, too ... just when we think we're making progress in healing, along comes one of those tornadoes without any warning, and BAM, we're right back there where there are no blooms on our trees. Or maybe it's just that ever-present lump in our throat and watering eyes, or the ugly weeds of discouragement, guilt, anger, etc., that Satan plants in our minds.

Fast forward to the spring of 2010. The dogwood blooms were back, in all their glory ... reminding us that even though we were still mourning the loss of our precious girl ... God was in control, and He had a good plan for us. We still had to deal with the tornadoes, pollen, and weeds, but through these beautiful blooms, He reminded us of His faithfulness to us.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

There is a legend that the cross was constructed from a dogwood tree. It is said that the tree was greatly distressed to be used for such a purpose, and that Jesus said to it, "Because of your pity for my suffering, never again shall the dogwood tree grow large enough to be used for a cross. Henceforth, it shall be slender, bent, and twisted, and its blossoms shall be in the form of a cross–two long and two short petals. In the center of the outer edge of each petal will be the print of nails. In the center of the flower, stained with blood, will be a crown of thorns so that all who see it will remember."

Yes, that's just a legend. But dogwoods always remind me of the cross and God's sacrifice of His own Son there. And because of that sacrifice, it can always be springtime ... even when it doesn't feel like it.

A Tale of Two Applications

This post is #34 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 19, 2008

On the day Hannah was admitted to Arkansas Children's Hospital in preparation for her brain surgery, I was called down to the financial office of the hospital.  On the way down the elevator, I remember feeling a little bemused that they weren't wasting any time making sure we would be paying our bill.

I walked into the office, mentally preparing myself to fill out the typical insurance paperwork, and hoping I had all the proper documentation.  I hadn't been thinking very clearly when we'd left home that morning ... still reeling from all that had taken place in the last 24 hours.

As I sat down, the lady introduced herself and confirmed that I was there because our daughter had been diagnosed with a brain tumor.  Yes, that was right.  She then began to tell me about a type of insurance supplement called TEFRA, for which she believed we would qualify.  I was somewhat familiar with TEFRA through my work as a speech pathologist, and told her I didn't think we would qualify.  She assured me that qualification was not based on income, but on the child's needs.  There would be a monthly premium which was determined by the parents' income, but that TEFRA was available for any child who had ongoing medical needs or disabilities.  She explained that after brain surgery, Hannah might need physical, occupational, or speech therapy to get her back on track ... "You just never know what her needs might be," she said.  She explained that if approved, the TEFRA would cover all of our co-pays and deductibles left from our primary insurance.

I remember thinking we were really not going to need this program.  Hannah was going to be fine.  Yes, she might need a little therapy, but I was a speech pathologist myself, and I could help her if she needed it.  But the lady was pretty insistent, saying it would only take a few minutes to apply, and I figured I might as well humor her and fill out the paperwork.

She then handed me a 16-page application to complete.  I almost handed it right back to her ... I was anxious to be done with all this paperwork stuff and get back to Hannah!  With a sigh, I settled into the uncomfortable chair and got to work.

It actually didn't take me long at all to complete the application.  Very few of the questions actually seemed to apply to our situation.  "How long has your child been ill?"  Ummm, about a week.  "How has your child's illness affected his/her ability to care for him/herself?"  Well, it hasn't.  "What activities is your child no longer able to participate in because of this illness?"  Uhhh, none.  "What life skills has your child lost due to this illness?"  Nada.

I finished it up and handed it back to the friendly lady at the desk.  Well, that was a waste of time.  There was no way we were going to get approved with those kind of answers!  I thanked her and headed back up to where Brad and Hannah were.

I didn't know then that the doctors at Children's add their own information to the TEFRA application.  When our paperwork was submitted with the Grade IV Glioblastoma Multiforme diagnosis added to it, we were approved for a full year of coverage.

And what a blessing that program turned out to be!  The benefits were retroactive, so it covered the co-pay for the initial MRI Hannah had, as well as every co-pay and deductible throughout the year of her cancer battle.

Almost exactly one year later, I found myself filling out the TEFRA renewal application while Hannah was in hospice care.  We knew that unless God provided a miraculous healing, Hannah would be leaving us soon, but we didn't know how long it might be, and we wanted to be sure we had coverage.

What a contrast in answers this time!  "How long has your child been ill?"  One year.  "How has your child's illness affected his/her ability to care for him/herself?   She can now do nothing for herself.  "What activities is your child no longer able to participate in because of this illness?"  There are no activities in which she can participate.  "What life skills has your child lost due to this illness?"  Every. Single. One.

With a heavy heart, I put the application in an envelope along with a check for the premium, and placed it in the hospice center's outgoing mail box.

About four hours later, Hannah left us for Heaven.  All those skills she had lost, all those activities she could no longer do ... None of that mattered anymore!  Freed from her cancer-riddled body, she was completely healed and restored.  And even in our great pain and loss, we rejoiced for her.

For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 Corinthians 5:1

Temodar

This post is #33 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 18, 2008

We had left the hem/onc clinic the day before feeling pretty good about the plan of attack.  We had once again had to sit calmly while listening to a litany of potential side effects of the Temodar.  The most common side effects included the following:

nausea and vomiting (may be severe),
loss of appetite,
constipation,
diarrhea,
skin rash,
tiredness,
weakness,
dizziness,
blurred vision,
sleep problems (insomnia),
mouth sores,
unusual or unpleasant taste in the mouth,
coughing,
headache,
temporary hair loss

So, yeah.  It was chemotherapy, after all.

As we understood it, Hannah would complete her six weeks of radiation and twelve months of taking this drug, and we would be home free.  She would have an MRI every two months to be sure the treatments were keeping the tumor at bay.

Imagine my dismay when I pulled up at the drive-in window of the pharmacy to get the prescription filled only to be told that a five-day supply would be $33,000.  "Ex-ex-excuse me?" was about all I could get out at first.  I had already been on the verge of tears at the very thought of filling a chemotherapy prescription for my 16-year-old daughter, and that put me over the edge.  The pharmacist kindly explained that our insurance had denied the claim, on the basis that Temodar was not an approved treatment for glioblastoma.  He encouraged me to call our contact person at Children's Hospital and have her get in touch with our insurance company. 

I drove home empty handed from that first trip to the drugstore, wondering how in the world we were going to do this.  If a five-day supply of Temodar was over $30,000, and Hannah would be taking it daily for six weeks straight, followed by five days out of every month for a year ... well, we would just sell our house, take out a loan, get a second job, whatever we had to do.  Thankfully, our liaison at the hospital was able to get it straightened out with the insurance company, and my trip back to the drugstore later that day was a success.

The proper dosage of Temodar is apparently determined by several factors, including the patient's body weight.  The pills themselves come in a variety of different milligram levels, which must be combined to make up the proper number of total milligrams.  So instead of taking just one pill, she had to take a handful of them.  They were large, so she had to take them one at a time, swallowing each one with water. 

During her six weeks of radiation treatments, she took the Temodar every day just before bedtime.  It wasn't fun, but if that's what it took for her to be cured, it would be a small price to pay.

Starting Chemotherapy

This post is #32 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 17, 2008

My post today will be in the form of an email I sent on this date ten years ago ...

Hannah had two appointments in Little Rock today, one for her radiation treatment at CARTI, and one with an oncologist at Children’s Hospital.  The oncologist filled us in on the details of the chemotherapy treatment.  Hannah will take a pill called Temodar every day for six weeks, while she’s undergoing the radiation treatments.  After that, she will have a month off from all treatments, then she will take a higher strength of Temodar for five days out of each month for approximately the next ten months.  She will begin taking the pills tomorrow evening.  They really do not expect significant side effects from this treatment.  The most common side effect is for blood counts to drop, and she will have to return to Children’s Hospital weekly so this can be monitored closely.

Bethany also returned to the doctor today.  She will be having another ultrasound of her liver and spleen this week to check her progress in recovering from mono, and she had some new bloodwork done today.  She is still running a low-grade fever and not feeling well.

Please continue to pray for Hannah as she begins to take the chemotherapy drug.  She did have a little spell of nausea this afternoon, possibly related to the radiation treatment this morning.  We are thankful that, so far, for the most part, she has been feeling really well.  Also, please remember Bethany in your prayers as she is still struggling to feel better.

Thank you so much for your faithfulness in praying for our family. We have really felt God’s presence and His peace over the last few weeks (hard to believe it’s been three weeks today since Hannah’s surgery)!  He truly is good…all the time!

Jill and Brad

A Cancer Prayer

This post is #31 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 16, 2008

The weekend was uneventful ... a nice break from radiation treatments.  We would be returning to the hematology/oncology clinic at Arkansas Children's Hospital on Monday, where we would learn the details of the oral chemotherapy drug Hannah would be starting.  We seemed to be settling pretty easily into the lifestyle of a pediatric cancer family.

A few months after Hannah went to Heaven, I ran across the following prayer on another child's CaringBridge website.  It so perfectly captures the desire of our hearts at that time ... and still.


A Cancer Prayer
by Stephen R. Chance

Dear God, We have prayed often for you to rid our child's body of cancer and never let it come back. We have prayed often for you to spare his body the harsh effects of the treatments he must endure. We have prayed for mercy and strength. But we have not yet prayed for the things about cancer we would like to keep.

Please let us keep the love that has been laid bare and that binds our family, our friends, and our community.

Please let us keep our preference to be together.

Please let us keep our appreciation for simple pleasures.

Please let us keep our ability to not sweat the small stuff.

Please let us keep our tolerance for each other's mistakes.

Please let us keep our focus on each other's needs.

Please let us keep our patient smiles responsive to normal childhood conflicts rather than the irritation that could so easily ensue.

Please let us keep our tendency to treat others tenderly knowing that we don't know all the heartbreaks they have felt.

Please let us keep the ease with which new acquaintances become good friends.

Please let us keep our enhanced appreciation for nature.

Please let us keep our motivation to live vigorously now rather than planning to live later.

Please let us keep our calling to help others fight cancer with better weapons and smarter generals.

Please let us keep our need to reciprocate the wonderfully kind favors we have received.

Please let us keep the strength to press on when faced with other illnesses, deaths, and human tragedies.

Please let us keep You at the center of our lives during good times, too.

Amen.

Stronger

This post is #30 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 15, 2008

On this date in 2008, the evening after completing her third radiation treatment, Hannah posted this on her Facebook page:  "I am a much stronger person." 

And she was.

Prior to February 20th, when she found out she had a brain tumor, Hannah was ... let's see, how can I say this nicely?  A worry wart.  A nervous Nellie.  A glass half empty kind of person.

If she missed five points on a test, she worried that she might get a B in the class.  If there was a thunderstorm in the area, she was sure a tornado was on its way.  If she had a hangnail, she was concerned it might get infected.  If Bethany stepped two feet away from us in Walmart, she was scared we were about to lose her.

But from the day of her diagnosis on, God gave Hannah a special grace that enabled her to face her situation without fear.  She never questioned what God was doing or asked, "Why me?"  Her strength in the face of overwhelming odds never wavered, and her nervous Nellie nature never reappeared.

I believe much of that was due to the fact that God had already started preparing for this when she prayed for a storm.  While we were still dealing with shock and awe of her diagnosis, she had already quietly accepted it as an answer to her prayer. 

She sure did make her Mom and Dad proud.

Worrying About Tomorrow

This post is #29 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 14, 2008

The next few days were spent adjusting to our new schedule of driving to Little Rock for Hannah's daily radiation treatments.  It's amazing how quickly you can adjust to something that's initially so foreign.  Hannah was basically able to keep her typical school day schedule ... I would pick her up just about the time last period was beginning ... we would drive to Little Rock and get her 20-minute radiation treatment ... then we would head home and she would do her homework before going to bed.  On Fridays they didn't do late afternoon appointments, so we would drive to Little Rock with the sunrise in our eyes, and she'd get her radiation completed before heading back to school for the day.

But even as I adjusted fairly easily to the schedule changes, the real battle was raging in my mind.  The anxiety and sense of dread that had first appeared in the pharmacy section of Walmart simmered just below the surface.  I remember clearly how that anxiety ramped up as Hannah lay in the MRI machine for the very first time, and the choking feeling in my heart as the doctor showed us the picture of the tumor invading her brain.

I also remember the release of that anxiety and worry as we prayed together as a family that very first night, placing Hannah's future in God's hands.  I wish I could say that it disappeared for good.  That anxiety and fear resurfaced many times over the next year, with each MRI (cancer parents call that "scanxiety")  and every meeting with the doctors.  There were always so many unknowns ... and what we did know usually wasn't good. 

I finally had to make a conscious decision (only by the grace of God) to live by Matthew 6:34: "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Our time with Hannah was too precious to spend it worrying about what the next day held.  I resolved to live each day we had with her to the fullest and to savor every moment.  During those days, I couldn't look at the morrow ... it was too terrifying ... and I'm glad that for the most part I didn't waste our time together doing that.   

We always closed our emails with the words "God is good, all the time", and we fully believed that to be true.  It was a continuous reminder to ourselves that no matter what the future held, God was still good and we could trust Him.