Hannah's 17th Birthday - Ten Years Later

This post is #117 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.

October 22, 2008

October 22, 1991 was a day that Brad and I had been anticipating with great excitement ... the day we would meet this little beauty for the first time. She was a planned induction, so I knew when I woke up that Tuesday morning (Did I really sleep the night before? I don't think so!) I would finally get to hold our firstborn child in my arms. To add to the anticipation, we did not know if this baby was going to be a girl or a boy ... something almost unheard of these days!

I remember the doctor exclaiming, "It's a girl!" Such a joy flooded my soul. I had only brothers growing up.  I knew nothing about raising girls ... but I was thrilled, nonetheless.

From that day on, October 22nd was a day to look forward to. Carefully selecting birthday presents, lovingly wrapping them, anticipating Hannah's excitement as she opened them. Choosing a theme for her birthday party, making (or usually buying, ha!) her a cake, sending invitations to her friends. Watching her grow from a baby to a toddler, a toddler to a child, a child to an awkward pre-teen, an awkward pre-teen to a beautiful young lady. October 22nd was a joyful mile marker, a date to celebrate another year of our precious girl's life.

October 22, 2008 was a little different. Hannah's 17th birthday came around just three weeks after we found out that her cancer had returned with a vengeance. Three weeks after her doctor, with tears in his eyes, told us that she had less than a five percent chance of survival. And three days after she lost every strand of her beautiful, thick, curly hair.  How do you celebrate your child's birthday, knowing that unless God does a miracle, it will be her last?  Of course, we knew that God could heal her at any time, but we also knew that in His omniscience, He may choose not to.

What kind of birthday gifts do you get for a teenager who is not expected to live? And how do you "celebrate" a birthday in that situation?  With God's help, and the support of wonderful family and friends who made her birthday special, we managed to do just that.

Radiation treatments don't take a break for birthdays, so the first order of the day was a trip to CARTI.  The staff there was wonderful, and they gave her a little party in honor of her birthday, which was so kind of them.  Still not a very fun way to spend your birthday.

We had a wonderful surprise late that afternoon when a group of Hannah's friends showed up at our house bearing gifts ... a brand new digital camera with all the accessories.  A group of her classmates had gone in together and collected money for these gifts, and that made them so special.  It was also the first time her friends saw her in her wig, and they all seemed very comfortable with it, and I know Hannah was relived.

Our gift to her that year was a new black and white bedding set.  She had seen this set at Kohl's and had requested it for her birthday.  It looked beautiful with her brick red walls and she loved it!

She also received dozens of emails, text messages, phone calls, cards, Facebook messages, etc.  I'm so glad she got to experience so much love on her last earthly birthday.

Her Facebook status from ten years ago today -- "Hannah wants to thank everyone for the birthday wishes!  Having a good day!"

Sigh.

Is it still painful, after the tenth time, to celebrate Hannah's birthday without her?  Oh, yes. Although it's easier to cope with now, the grief still threatens to overwhelm at times. I wish I could explain how every fiber of our family's life is different now ... how every detail, every moment, every breath is fundamentally different from what it once was. I think it's something only another mom or dad who's lost a child can understand. Or any child who's lost a sibling.

In our limited human minds, things are not as they "should be." Both of our girls should be here with us, and we should be watching them both grow into adulthood. My relationship with 27-year-old Hannah should be transformed now from mother/daughter to best friends. Bethany should be sharing secrets with her older sister, and benefiting from her experience and guidance. Her dad should be making plans to walk her down a rose-petal strewn aisle, instead of kneeling down at her rose-petal strewn grave.

But in God's eyes, all is exactly as it "should be." Before Hannah was born, He knew exactly how many days she would live. She didn't live one day more or one day less than she should have. His purpose for her life was completed in the number of days He gave her. And while we would have chosen for her to live many, many more days, that was not in His perfect plan.

And one day, Jesus will return, and all will finally be as it "should be." There will be no more grief, no more pain, no more cancer, no more suffering, no more sin, no more tears. And what a day that will be! Even so, Lord Jesus, come!

"My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:15-16

"Annoying" Platelet Issues

This post is #116 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.

October 20, 2008

Hannah's facebook status from ten years ago today ... "Hannah is enjoying being home after the annoying day of another platelet transfusion."

Hannah rarely complained, so this expression of annoyance revealed a lot about how she felt about platelet transfusions.  She had battled platelet issues off and on throughout the early months of her treatment, and once again, low platelets were becoming an ongoing problem.

My email from a decade ago recaps the weekend of early birthday surprises and hair loss, and gives some additional details about her blood work issues ...

Today was a very busy day of appointments and treatments. We arrived at Children's Hospital at 9:30 a.m. for our usual Monday blood work and meeting with the oncologist. Her blood work showed very low platelets (16,000--normal is between 150,000 and 400,000) and a fairly low white blood count (0.89--normal is between 4.5 and 13.0). So, she had to get an infusion of platelets before they would let us go over to CARTI for her radiation treatment. We were able to leave the hospital and go eat lunch while we were waiting for the platelets from the blood bank, then returned for the approximately 1 1/2 hour infusion process. After that, we went for her radiation treatment, which was the 13th out of 20. We finally got home just a little while ago.

I must share a little bit about our wonderful weekend. Hannah received some amazing gifts this weekend from two groups of people...one gift was from our immediate and extended family (a laptop computer) and the other gifts were from the El Dorado High School Class of 1985--Brad's graduating class (a TV, DVD player, Ipod, and videos). And these gifts are in addition to all the financial assistance, meals, cards, etc., that we have received in recent weeks...We have simply been overwhelmed with the generosity of people as we have been traveling this journey!

The timing of these gifts was incredible, as well, because on Sunday evening, after all the gifts had been opened and all the family had gone home, Hannah took out her ponytail and lost most of her hair. I really believe the love and support that she has been shown over these last several days and weeks helped to soften the blow of that experience. She wore her wig today as we went through our day's activities, and has said that she is actually relieved to have the hair loss behind her now. Her faith is strong in the One who tells us that, "Indeed, the very hairs of your head are all numbered...." (Luke 12:7).

Please continue to pray for her as she adjusts to her new appearance, and for protection from infections and illness with her immunity so low. Apparently, the spine has a lot to do with the production of blood cells, and since that's where she's receiving the majority of the radiation, she will continue to have problems with platelet and white blood cell production. Thankfully, her red blood cell counts and iron counts are within the normal range. If they were low, she would probably feel a lot worse. She also continues to have a constant sore throat, but again, we are thankful that her appetite is good and it hasn't caused her too much trouble with swallowing.

Thank you so much for your faithful prayers. They help us to renew our strength on a daily basis and remind us that He is good, all the time!

"Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Brad and Jill

Of Razors and Wigs

This post is #115 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.

October 19, 2008

Hannah's facebook status from ten years ago today ... "Hannah is lovin' my brand new laptop, tv, dvd player, and ipod!  I have the best family in the entire world!"

The timing of all these wonderful early birthday gifts couldn't have been better, because the day we had been dreading for so long was suddenly upon us.  After all the extended family headed home for the weekend, and shortly after posting the above Facebook status, Hannah reached up to take out her ponytail holder ... and nearly all of her hair came out with it.

It was time.  We brought one of our kitchen table chairs into the living room, and I prepared to shave her head.  She didn't want to do it in the bathroom, because she didn't want to watch in the mirror.  I went through the motions of shaving with the razor, but her hair was just coming loose in my hands.  I did my best to keep the tears tamped down, and I honestly don't remember how successful I was.  Thinking back on it, the entire experience still feels very surreal ... as if I'm watching strangers acting it out on a stage.

The whole process didn't take long at all, and when it was complete, Hannah hopped up and said she wanted to go look at herself.  My heart went to my throat ... I could not imagine what her reaction was going to be.  Hannah was a humble person in most aspects, but there were two things in which she took great pride, almost to a fault, actually ... her intellect, and her thick, curly hair.

I let her go on into the bathroom ahead of me, then approached the door after she had had a couple of minutes alone to process her new look.  Her words as I entered:  "Well, I still look like me.  I'm just bald!"  With that pronouncement, she went to hunt down her wig.

The wig is another story.  When the radiation oncologist shared with us the jarring news that Hannah would indeed lose all of her hair this time, he recommended that we go ahead and purchase a wig well before her hair loss.  That way she would have plenty of time to carefully choose exactly what she wanted, and get used to the idea of wearing it before she actually needed it.

So on one of our trips to CARTI, we went next door to the Winthrop Rockefeller Cancer Center and rode the elevator all the way to the top floor where you can get free wigs for cancer patients.  What a discouragement that was!  Every wig there was "old lady" style hair -- There was nothing that an almost 17-year-old girl would wear!  The lady working there was very helpful, and gave us a handful of wig catalogs to take home.

Several times I tried to get Hannah to look through these catalogs with me, but she would just flip over a few pages and declare that there was nothing in them she liked.  I scoured the pages for something that looked like a teenage girl might wear, but when I tried to show her my findings she would barely glance at them.  She was not disrespectful or defiant ... just totally disinterested.  I think the reality was just too much for her.  If she didn't choose one, maybe she wouldn't need one.

At one point, I suggested to her that we forego the whole wig idea and just get her a variety of hats.  She looked at me with shock and said, "I can't wear a hat at school.  It's against the rules."  I assured her that since her dad was the high school principal, I was pretty sure an exception could be made for her.  Nope, she didn't want any special allowances at school.  Never mind the fact that she wasn't actually attending school at that time.

So where did we get her wig?  At a gas station.

Let me explain.  Near our home there was a gas station/convenience store and believe it or not, they had an honest-to-goodness wig section.  She and I were driving by it one day, and on a whim, we pulled in.  They actually had wigs that looked more like a teenage girl might wear.  She quickly glanced around, pointed and said, "That one."  The clerk was very helpful and kind and explained that we could choose our color for this particular style of wig.  Hannah decided on a little bit darker color than the model wig, and just that quick, it was ordered.  It came in about a week later, and I dropped by and picked it up.  I've always been thankful that the clerk asked me no questions that day ... I could not have answered them.  As relieved as I was to finally have this wig decision behind us, the reality was a little too much for me too.

An Early Birthday Soiree'

This post is #114 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.

October 18, 2008

Hannah's 17th birthday was rapidly approaching on October 22nd, and honestly, I was struggling a little bit with how we were going to celebrate this event with her prognosis dangling over our heads.  How could we possibly wring any joy out of this birthday, which, without a miracle, would almost certainly be her last?

Thankfully, our amazing family and friends made made the days leading up to her birthday so special ... not just for Hannah, but for all of us.

We owe a huge debt of gratitude to the El Dorado High School Class of 1985 for their kindness to Hannah and our family. This is my husband's graduating class, and they are an exceptionally close group of folks.   A large number of his classmates followed Hannah's story through our emails, and as her 17th birthday approached, they took up a collection, and ten years ago today they hosted a party (which they called a "soiree'") for her. They presented her with a flat-screen TV, a DVD player, and a collection of her favorite movies. We installed the TV in her bedroom (we've never allowed our kids to have TVs in their bedrooms, but this was a unique circumstance!) and that TV was a great way for her to pass the time when she didn't feel well enough to get out of bed.  Such thoughtful gifts!

Hannah received another wonderful early birthday surprise when several members of our immediate and extended family went in together and presented her with a beautiful red laptop computer!  She couldn't have been more thrilled.  She used it constantly over the next couple of months ... at least until her vision deteriorated to the point she could no longer use it.  Then I began to use it to send my email updates.

A mother never forgets kindnesses extended to her children ... These are indelibly etched in my mind.

Mother/Daughter Spa Day

This post is #113 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.

October 16, 2008

During the year Hannah was battling cancer we received many wonderful gifts.  People were so incredibly kind.  After the recurrence of her cancer, hot meals were brought to our home nearly every day by people in our little community and from our church and that was such a blessing.  I had little opportunity to go to the grocery store during those days, much less cook!

One kind friend gave us a gift certificate for facials and pedicures at a local spa.  None of us had ever had a facial or a pedicure before, so this was a special treat, and so much fun to experience together!  We were all in the same room, lying on three beds side by side.  We had the opportunity to choose what type of facial we wanted and we each chose something different ... mine was some sort of seaweed concoction, as I recall.  Ahhh, so nice!  Then we choose our favorite polish colors and enjoyed having our toes done together and sitting in the fancy massage chairs.

The pampering was wonderful and much needed ... but the best part was the three of us sharing this experience together and the sweet memories it provided.  Hannah was beginning to feel the effects of the intensive radiation she was undergoing and we knew she was most likely just days away from losing her hair, so these moments of luxury were a blessing indeed.

My email from ten years ago today ...

Just wanted to let everyone know that Hannah is having a good week this week! Yesterday marked the half-way point of her radiation treatments...ten more to go. So far, the only side effect of the radiation (other than fatigue) is a sore throat, which they told us would probably occur. She is also losing some of her ability to taste, but thanks to the steroids, her appetite is still good. They have told us to expect hair loss some time within the next several days, so we are preparing for that. We are SO thankful for every good day...God has really been faithful to us. He is good, all the time!

Jill and Brad

Family Photo Shoot

This post is #112 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.

October 13, 2008

 

Things were continuing to go well with Hannah's tomotherapy radiation treatments ... other than a recurrence of low platelet issues.  We were used to that, though, so we were able to pretty much take that in stride.

We spent the weekend in Briggsville, Arkansas, which is the Sullivan family farm and gathering place.  While we were there, my sister-in-law pulled out her camera and we did a family photo shoot.  Hannah's hair was really starting to let loose -- if you look carefully you can see that in the photo above -- and we wanted to get some pictures of our family before it fell out completely.

Posing for those pictures that day was surreal, as we did so with the full awareness that unless God miraculously intervened, these could very well be the last family photos we would ever take.  Of course, we didn't want the girls to know that, so we posed as directed and smiled on cue.  One of these pictures is now the cover photo of this blog.  And oh, what a treasure these pictures are today!

Hannah's grave (actually her future resurrection site!)  is just about a half mile from where these photos were taken.

My email from ten years ago today ...

Today we went to Arkansas Children's Hospital for blood work and to see Hannah's oncologist, followed by her daily radiation treatment at CARTI. Her doctor was pleased with how well she is doing, and the fact that the side effects of the radiation have thus far been minimal, but he did tell us that her platelet count has dropped pretty low. So, tomorrow we will go for radiation at 8:30 a.m., followed by a transfusion of platelets at Children's Hospital. He also wants us to come back on Friday after radiation for another blood draw to check her platelet count again. Apparently, radiation to the spinal cord can really cause a drop in platelet production, and they want to keep on top of that.

Over the weekend, we had the opportunity to get together with several of Brad's family members, and my sister-in-law (who is a great photographer!) took several pictures of our family. I've attached a couple of them for you to see. In both of these pictures, Hannah is on the right, and Bethany is on the left in the striped sweater. Thank you, Maria!

We are so thankful that Hannah is feeling well overall, and that we have been blessed with such a great medical staff to oversee her care. We are also filled with gratitude for all of the friends, family, and strangers who have done so much for us...we can never thank you enough for the prayers, emails, cards, phone calls, gifts, meals, etc. We see these expressions of love as symbolic of what Jesus Christ has done for all of us...His salvation is the ultimate gift!

I trust in You, O Lord; I say "You are my God." My times are in Your hands. Psalm 31: 14-15
God is good, all the time!

Jill and Brad

"Having Better Days"

This post is #111 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.

October 9, 2008

Hannah's facebook status from ten years ago today was, "Hannah is having better days ... getting ready to leave for radiation."

And they truly were better days.  At this point, she was sailing through the radiation treatments with relatively few side effects.  She was thrilled to be well enough to attend a high school football game that weekend and spend some time with her friends.  As you can see from the picture taken at the game that evening, she looked perfectly healthy -- beautiful in fact -- even with her thinning hair.

My email from ten years ago today ...

Another quick update tonight...We haven't updated in a few days, because thankfully, there's been nothing much to say! Hannah has been completely nausea free for several days now, and so far has not had any problems with side effects from the radiation treatments, other than mild fatigue and a constant feeling of being "off balance."  She will have her seventh treatment out of 20 tomorrow morning, and is hoping to be able to attend our high school football game tomorrow night.

Our family has been surrounded by love and support over the past several months, and we are so thankful to all of you for that. God is truly good, all the time!

"...I live by faith in the Son of God, who loved me and gave Himself for me." Galations 2:20 NIV

Brad and Jill

Somewhere On the Highway In Between

This post is #110 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.

October 6, 2008

After that bumpy first day of tomotherapy radiation, things settled down into a routine which was already somewhat familiar to us.  The daily trips to Little Rock were just an ongoing part of our lives.  The only difference this time was that Hannah was no longer trying to maintain both school and radiation treatments.  We decided as a family that her focus should be on simply getting well.  We would deal with school when cancer was in the rear view mirror.  I also gave up trying to work at this point.  I am a speech pathologist and had been working as an independent contractor for the last few years, so it was easy for me to step away for a time.

So most of the time, it was just the two of us.  Brad was at work, Bethany was at school, and Hannah and I were either at home, at CARTI, at Children's Hospital, or somewhere on the highway in between those places.  And somehow, even with a glioblastoma diagnosis hanging over our heads, we enjoyed that time together.  I am so thankful for those days.

Just a quick update this afternoon...Hannah has had another good day today, and we are thankful. We had a nice, restful weekend, and enjoyed another visit from family. Hannah's radiation treatment today was uneventful, and she has been completely nausea-free! She will have four more treatments this week, and after that we'll be down to only thirteen more! She also had blood work today, and most of her counts were in the normal range...and should remain there, since she will be completely off of any chemo for several more weeks. We have much to be thankful for today...especially for all of the wonderful friends, family, and even strangers who have shown the love of Christ to us over the last couple of weeks. We are overwhelmed with gratitude, and rest in the knowledge that God is good, all the time!

Some trust in chariots and some in horses, but we trust in the name of the Lord our God. Psalm 20:7

Jill and Brad

Homecoming 2008

This post is #109 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.

October 3, 2008

Since the recurrence of Hannah's cancer, she had not returned to school, and I had not returned to work.  We pretty much stayed holed up in our house, only venturing out for doctors' appointments and radiation treatments.  And she and I were fine with that, honestly ... as homebodies we both enjoyed that time together at home.

Eventually you have to come out, though, and about a week after we learned that Hannah's cancer had returned, I attended a homecoming pep rally at the high school. I had not been out in public in our little community since Hannah's doctor had informed us that she had basically no chance of survival, and I was extremely fragile emotionally. I would never have even gone to this pep rally, except for the fact that Bethany was cheering and I felt that I needed to be there to support her. I had already missed so many of her activities due to Hannah's illness.

I entered the gym alone, without the slightest idea how I was going to sit there and watch all of Hannah's classmates celebrating homecoming and enjoying their lives, while Hannah was at home recovering from her radiation treatment that day.   How would I possibly be able to hold it together?  I did not want to talk to anyone or answer prying questions, and I didn't know how I could avoid that as I walked into that crowded arena.

About that time, one of the high school teachers approached me, walked me to a seat, sat down beside me, leaned in, and began talking in my ear.  She babbled on and on about the decorations, the girls' dresses, the upcoming dance, everything under the sun. I didn't have to do anything, not even formulate a reply to her comments ... but her chatter kept my mind distracted and protected me from the curious. When it was over, she accompanied me to the exit, talking all the way, and it was almost as if the Red Sea parted ahead of us as we made our way through the crowd. Looking back, it probably was like that ... I'm sure people were as uncomfortable about seeing as I was about seeing them. Once I was outside, she disappeared into the crowd.

To this day, I don't know if she has any idea what she did for me that afternoon.  She may not even remember it.  But I've always been grateful to her for getting me through what could have been a very difficult situation.

Hannah's facebook status from ten years ago today -- "Hannah feels much better today than the horrible day yesterday!  Keep prayin'!!"  

And my email ...

Just a quick update tonight....I am thankful to say that Hannah had a much better day today! She had her second radiation treatment this morning at 11:00, and has felt fine ever since. The steroids seem to be working to reduce swelling, which has really decreased the nausea and headaches. We are looking forward to a treatment-free weekend, and then starting back up on Monday--only 18 more to go!

Thank you again for all the prayers. We definitely feel the comfort and strength that God is providing. He is good, all the time!

Jill and Brad

"It's Only Hair"

This post is #108 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.

October 2, 2008

Ten years ago today we began the next phase of Hannah's treatments ... tomotherapy radiation.  Her previous radiation treatments had been very targeted, focused precisely on the location from which her tumor had been removed.  The tomotherapy would be different, in that the machine would actually radiate her from the top of her head to her tailbone, all around her body.  While she was in the machine that day, the doctor explained all of this to us and did his best to prepare us for what was to come.  We talked a little bit about the new chemotherapy drugs she would be on, and I commented about how relieved I was that once again, this particular type of chemo would not cause Hannah to lose her hair.  I will never forget his reply:  "Oh, well, the radiation will make her lose her hair."  As I gasped for breath, he explained that because the radiation would be going all around her head this time, her hair would not survive its rays.

The tears began to flow immediately, and I actually had to step out of the room to try to get control of myself.  How was I going to break this news to Hannah?   She had been so relieved and happy when her oncologist at Children's told her that the new chemo he was prescribing would not cause her to lose her hair.  Hannah's treatment was over before I was able to completely pull myself together, and when she saw me she immediately asked what was wrong.  As you can see from my email ten years ago, she took the news in typical Hannah fashion ...

This afternoon we took Hannah to CARTI in Little Rock for her first tomotherapy radiation treatment. We met briefly with the oncologist/radiologist who explained to us that she will have a total of 20 treatments to be completed over a period of four weeks. The tomotherapy radiation is different in that they will be treating her entire head and spine, rather than a single focused area as they did previously. He explained to us that anywhere the spinal fluid flows is a potential area for tumor growth, so they have to treat the entire area. He also told us that this time she will lose all of her hair, instead of just patches of hair like she did last time, which she was able to hide so easily. He also went over all of the possible side effects from treatment, and it is a rather lengthy list. He told us that she will probably not be able to attend school at all during these treatments. He gave us prescriptions for an anti-nausea medication (Kytril) and for steroids, but told us not to start the steroids unless she begins to have severe headaches or worsened nausea.

They did another CT scan today, while she was in the tomotherapy machine, to make sure the alignment was exactly right, and then did the radiation treatment. The entire process took about 35 minutes, but from now on, each treatment will only take about 12 minutes. On the way home, we had a bit of a scare. We were nearly home when she began to develop a severe headache, pressure in her ears, and nausea. We got her home as quickly as we could and called CARTI. The on-call doctor I talked to (it was after hours by this time) explained that the tumors had probably swelled due to the radiation and that was what was causing the problem, and that we should go ahead and start her on the steroids. He said that she would probably have this reaction the first few times she had the treatment, but it should get better over time, and they could cut back on the steroids gradually at that point. I had already given her some Tylenol by this time, and she was feeling somewhat better, but we started her on the steroids in hopes that we could avoid this problem tomorrow. She is resting comfortably right now.

I think the reality of how difficult the next few weeks and months of treatment may be really hit all of us today. Hannah has been amazing though ... when we told her today what the doctor said about her hair, she said, "Well, it's only hair ... it'll grow back." Her faith is so strong, and she is truly an inspiration to us. In spite of the storms and emotions swirling in and around us, God has given us a peace as well, a peace that can only come from Him. A dear friend of mine wrote in an email that we can just rest in His "Godness" and that's what are doing.

We have received so many wonderful emails, cards, phone calls, gifts, meals....it's amazing how much those things mean in a time of storm like this. There are too many emails to personally respond to all of them, but I am printing out every one for Hannah to read and for us to keep. All we can say is, "Thank you!" You all make it easy to remember that God is good, all the time!

Jill and Brad

A Little More Time

This post is #107 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.

September 29, 2008

When Hannah completed her first round of radiation treatments on April 25, 2008, the technicians at CARTI gave her a little party to celebrate her last treatment.  What a relief it was to have that part of her treatment protocol behind us!  So it was a bit surreal to find ourselves returning to CARTI just five months later, about to start the whole process all over again.  One of the most jarring things about this appointment for me was watching Hannah patiently lie still on the table as the technicians created a new radiation mask for her ... this one extending all the way down over her shoulders and chest.  What a nightmarish-looking thing it was.

While I was sitting with Hannah as she underwent this process, Brad talked privately with her radiation oncologist.  The doctor explained to him that we should not view these new radiation treatments as a potential "cure", but that they might give Hannah a little more time.  Up to that point, none of these medical people had talked to us in terms of "time."  Our understanding had always been that we were working toward a cure.  Very gradually, we were beginning to come to an awareness that all our efforts were simply to give her "more time."

My email from ten years ago today ...

Today we went to CARTI (Central Arkansas Radiation Therapy Institute) for our initial consultation for Hannah's new radiation program. She had a CT scan and they made new molds for her to wear while she is on the table during the radiation treatments. We had a brief meeting with her radiologist/oncologist. He explained that determining the radiation field is going to be a somewhat complicated process, because they have to be very careful not to re-radiate the areas of her brain that were done before. They will be comparing today's CT scan with the scan done in February to determine exactly what areas can be radiated. We will be meeting with him again on Thursday to find out the exact plan of treatment, and should begin radiation that day. If it takes them a little longer to determine the plan, we may not go again until Monday, but as of right now, we are scheduled to begin on Thursday. We are anxious to get started and begin shrinking those tumors; however, we want them to take the time they need to be precise. The CT technicians explained to me that her radiation will be somewhat different this time ... using something called "tomotherapy".  CARTI is the only location in Arkansas that has one of these type of machines, and it is considered state of the art. We feel very comfortable that Hannah is in the best earthly hands possible.

This past weekend was a very good one. We were able to spend lots of time visiting with friends and family, and were able to participate in a special prayer time in our church for Hannah. We feel that God is calling us to be faithful to Him throughout this journey, and we definitely feel His peace upon us. We are so appreciative of all the many, many emails, phone calls, cards, and gifts we have received over the last several days. We have been contacted by people we haven't heard from in years, people who we don't even know, and people from around the world who tell us they are praying for Hannah. What a blessing! God is truly in control, and He is good all the time!

Brad and Jill

Googling Glioblastoma

This post is #106 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.

The day we returned to Arkansas Children's Hospital to have the sutures removed after Hannah's brain surgery in February 2008, we were told that her tumor was a Grade IV Glioblastoma Multiforme. My brain immediately started whirring; mentally spelling out g-l-i-o-b-l-a-s-t-o-m-a, fully intending to google it the second we got home. Then the doctor's voice brought me back to that little treatment room ... he was saying, "Now, don't go home and google glioblastoma. You won't like what you read about it ... and besides, what you read won't apply to Hannah anyway. Most people who get glioblastomas are older and the prognosis is not good. She's young and healthy, and with treatment, I think she's got a good chance of cure."

Our family made several decisions that day, the biggest of which was that we were going to place Hannah in God's hands and fully trust Him in this situation. One small part of that larger commitment was to follow the doctor's advice and not google glioblastoma. I studiously avoided any information about glioblastoma cancer. When Ted Kennedy was diagnosed with glioblastoma about a month later, I put my fingers in my ears and sang, "La la la la la la la" every time they talked about it on the news. Well, not literally, but you know what I mean! I did listen to the Ted Kennedy stuff enough to know that he was on the exact same treatment protocol (surgery, radiation, Temodar) as Hannah was ... and I figured, if that's what Ted Kennedy is getting, it must be the best treatment available. So I felt good about the treatment she was getting.

Over time, it almost became a source of pride for me. I had so much faith that God had everything under control, I didn't need to know anything about glioblastoma. And things were going so well. Hannah had completed her radiation treatments, she'd had several clear MRIs, she was dealing well with the oral chemo drug. Actually, I was kind of afraid that if I did google it, what I saw might shake my faith ... so I resolutely continued my glioblastoma google fast.

Then, in September of 2008, seven months after our first meeting with that doctor, we met with him again. This time, he gave us the news that Hannah's cancer had returned, in the form of multiple tumors on her brainstem and spine. With tears in his eyes, he explained that Hannah had less than a five percent chance of survival with this recurrence.  As we drove home from that appointment, I decided it was time to google, and shortly after we arrived, I sat down at my computer.

Here's what I read on Wikipedia:

"Glioblastoma Multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans. Despite being the most prevalent form of primary brain tumor, GBM's occur in only 2-3 cases per 100,000 people in Europe and North America.

Glioblastoma has a very poor prognosis, despite treatment consisting of craniotomy with surgical resection (removal) of as much of the tumor as possible, followed by concurrent or sequential chemo therapy, radiation therapy, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS (Central Nervous System) malignancy.

It is very difficult to treat glioblastoma due to several complicating factors:

* The tumor cells are very resistant to conventional therapies
* The brain is susceptible to damage due to conventional therapy.
* Many drugs cannot cross the blood-brain barrier to act on the tumor.

Common symptoms of the disease include seizure, nausea, headache; the single most prevalent symptom is progressive memory loss, personality changes & neurological deficit.

Symptomatic therapy:
Supportive treatment focuses on relieving symptoms and improving the patient's neurological function. The primary supportive agents are anticonvulsants and corticosteroids.

* Historically, around 90% of patients with glioblastoma underwent anticonvulsant treatment, although only about 40% of the patients required this treatment. Recently, it has been recommended that neurosurgeons not administer anticonvulsants until a seizure occurs.

* Corticosteroids, usually dexamethasone given 4 to 10 mg every 4 to six hours, can reduce edema (swelling), diminishing mass effect and lowering intracranial pressure, with a decrease in headache or drowsiness.

Prognosis:
The median survival time from the time of diagnosis without treatment is 3 months, but with treatment survival of 12-24 months is common. Death is usually due to cerebral edema (brain swelling) or increased cranial pressure."

Not too encouraging.  "Well," I thought, "Everybody knows Wikipedia is not a dependable source of information" .... so I searched and searched and searched for something else, something positive about glioblastoma multiforme. You know what? There is nothing positive about glioblastoma multiforme! So I searched for treatment options and treatment centers. Basically all of the major cancer treatment centers were using the same protocol our doctor had recommended for recurrence ... additional radiation treatments (tomotherapy this time) and an Avastin/Irinotecan chemotherapy combination, along with steroids to keep brain swelling under control. Then I looked at the cure rates for these centers, and I found that there were no cures. Treatment generally extended patient's lives, but no one survived long term.

I continued my search for something a little more positive.  Eventually I found a site called "Young Adults Surviving Glioblastoma", and I thought, "Finally...Something encouraging!" And it was encouraging, at first. The home page was full of pictures of vibrant, smiling, healthy-looking young adults in a variety of settings ... riding bikes, climbing mountains, or surrounded by friends and family. I read their stories and rejoiced in how well they were all doing. And I thought, "That will be Hannah. We can put her on this website someday." Then I clicked on another page on that same site, and my hopes came crashing down. This page was full of obituaries ... for all of those healthy-looking young people I had just been reading about.

When I finally stood up from the computer, my world had been completely rocked. For several days, I was shaken to the core. For the first time, I understood that Hannah had been diagnosed with what is basically a terminal cancer. What does a mom do with this kind of information?

Gradually, I came to the realization that nothing had really changed. Sure, I had more knowledge about what we were dealing with, and it wasn't good, but that didn't change the fact that God was in control. It didn't matter what the research showed; it didn't matter what the cure rates were; it didn't matter that there were so many obituaries on that website ... Hannah's life was securely in God's hands, and He knew the number of days He had planned for her. And no matter what her future might be, my job as her mom was to trust Him ... the One who loved her even more than I did. And when I released her back into His hands, the peace returned.  It wasn't easy, and it wasn't a one-time deal. I had to consciously choose to trust Him, often many times a day, with what was happening in our lives. And He was faithful ... giving a peace that passed all understanding even in the midst of excruciatingly difficult circumstances.  For that I will always be grateful. 

Less Than Five Percent

This post is #105 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.

September 26, 2008

"Hannah Sullivan is getting ready to go to children's hospital and spend the day and night.  Keep praying!"  ~ Hannah's Facebook status 9-26-08

Ten years ago today, our family headed to Arkansas Children's Hospital with a suitcase in tow, having no clear idea what was in store for us.  We knew we would be meeting with Hannah's oncologist that morning to discuss the MRI results and find out what our plan was now that her cancer had returned.  We had been told to come prepared to spend at least one night, maybe more, so a new chemotherapy regimen could be started immediately.

It was a Friday, and we made the decision to pull Bethany out of school and bring her along with us.  She wanted to come, and we felt it was important for us to face this thing head-on as a family.

Our oncologist was kind but honest when we met with him that day.  He showed us the scans and gently and thoroughly explained what was going on in Hannah's brain and spine.  He looked the four of us square in our eyes and told us that Hannah had less than a 5% chance of survival with this recurrence.  In the next breath, he explained that he was recommending a new kind of radiation and a different form of chemotherapy and together we were going to try to beat this thing.  Brad and I nodded numbly, barely able to take it all in.  There was a plan in place, which no longer required us to spend that night in the hospital, and with that, we were on our way.

We left the hospital with two hungry girls and headed to Firehouse Subs.  I couldn't imagine how the girls were going to deal with what they had just heard or what we were going to say to them.  As we sat at the table waiting for our order, Hannah asked, "So what are we going to do now?" and Brad replied, "We're going to trust God."  She nodded her head in acceptance, and dug into her sandwich when it arrived.  As the girls ate and talked about typical sister stuff, Brad and I picked at our meals in stunned silence.  There was so much we wanted to say to each other, but nothing we could say in front of the girls, so we had to settle for communicating with our eyes.

As we prayed at bedtime that night, we once again placed Hannah's life into God's hands.  We knew that our God was not a God of percentages, and that He could heal her if He chose to do so.

My email from ten years ago today ...

We are back at home this afternoon after meeting with Hannah's oncologist at Children's Hospital this morning. We drove up to the hospital this morning, expecting to spend the night, but found that the treatment plans have changed. The oncologist showed us pictures of Hannah's scans, and explained that the original tumor has seeded in the lower part of her brain and in her spine. There are at least nine tumors in her spine and two near her brain stem. After carefully reviewing her scans and the available research regarding treatment of glioblastoma tumors, the oncologist has determined that Hannah should receive radiation to the entire region before beginning the chemotherapy treatments. We will go to CARTI in Little Rock on Monday to meet with the radiologist and find out what the radiation schedule will be. The oncologist told us to expect about six weeks of daily radiation treatments. This will be similar to the radiation treatments that Hannah underwent right after surgery, so this is a familiar process. After completing the radiation therapy, new scans will be done. If all looks good, Hannah will receive four chemotherapy treatments (one every two weeks). Then they will wait two weeks and repeat the scans. The goal will be to reduce the size of the tumors and stop any new ones from forming.

The oncologist was very straightforward and honest in explaining to us the serious nature of Hannah's situation. We told him that there are many, many people praying for him, and He agreed that God's help will be needed for a cure. We are thankful that we serve a God who is the Great Physician. God has given our entire family, including Hannah, a peace that can only come from Him. Please join us in praying for healing, and in praying specifically for Dr. S, our oncologist, and Dr. P, our radiologist ... that God would give them the wisdom they need to determine the best plan of treatment for Hannah. We know that the ultimate outcome is in God's hands, and that He loves Hannah even more than we do.

God is good, all the time, even in (especially in) the middle of a storm!
Jill and Brad

"I'm Gonna Give God the Glory!"

This post is #104 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.

September 24, 2008

After a mostly sleepless night, Brad and I got up the next morning, steeling ourselves for what we might hear from Children's Hospital that day. We put on our brave faces for the girls, and woke them up as usual for school. Hannah woke up feeling good that day, and was excited about going to school, because she was going to be ordering her senior ring. She had already picked it out from a school ring catalog, and knew exactly what she wanted. So, Brad went to work (as principal at Hannah's high school) and I dropped the girls off at school. I was supposed to go to work that day too, but I just couldn't. I called our school secretary and told her that I wouldn't be in, without any further explanation. Of course, by this time, they were used to me missing work with Hannah, so she didn't question it.

At 8:00, I called our oncology nurse at Children's and asked her if the scan results were in yet. Of course, they weren't. I explained to her how what had started as a simple brain scan had turned into a lengthy brain and spine scan and she was surprised to hear that. She assured me that as soon as she received the results, she would call me. I waited around the house for about an hour, trying to find things that needed doing, but I couldn't focus on anything and was too restless to just sit and wait. Finally, I just got in my car and just began driving. I didn't have any destination in mind, I just knew I had to keep moving.

I drove around aimlessly for quite awhile until finally, my cell phone rang. The caller ID showed Children's Hospital, so I parked the car and answered it. The nurse told me that the results were in, and I clearly remember her pausing, then quietly saying, "It's bad." She patiently explained to me (twice) that the scans showed multiple tumors on Hannah's brainstem and up and down her spine. She then said (twice) that we were to report to Children's the next day, prepared to spend the night, and that we were going to begin a new chemotherapy regimen. I hung up, shaken to the core, but without tears at that point. I don't remember the drive to the school, but I do remember walking into the building and praying that Brad would be in his office so I wouldn't have to go wandering around the school looking for him. He wasn't. I found him in an upstairs hallway talking to a teacher, and I didn't approach him or speak ... I just gestured to him to come. I hurried back to his office, with him following behind me. He shut the door, I told him the news ... and then the tears came for both of us.

I'm not sure how much time passed while we processed this news, but we knew that we needed to tell Hannah. She had made me promise when she went to school that morning that we would get word to her as soon as we got the results of the MRI. So Brad stepped out, got her out of class, and brought her to his office. She could immediately tell by the stricken look on our faces that the news wasn't good. We told her what the nurse had said, and then spent some time crying together. About that time, we realized that Bethany would be in the cafeteria eating lunch, so Brad asked the counselor to get her and bring her to his office. So she joined us in his office, and we shared the news with her. And the waves of emotion began yet again. At last, we began to pull ourselves together and decided we would just leave school together, head home, and spend the rest of the day regrouping.

Just as we were about to leave, the school ring salesman walked into Brad's office. The poor man had no idea what he was walking into! As soon as he came in and saw our tear-stained faces, he started excusing himself and backing out.  But, you know what?  Hannah wanted to order her ring! That's what she had come to school for that day! And that's what she did. As we stood numbly off to the side, she sat down with him, calmly explained the style she wanted, the color stone she wanted, how she wanted her name engraved on the side. After they got all the paperwork filled out, she was ready to go home. So we all got in the car and headed out. But as we were driving past the gym, she said that she had heard that the letterman jackets were in, and she wanted to stop by and get hers before we left. So we stopped outside of the gym, and Brad ran in and got her jacket for her.

I don't remember much about the rest of that day, but I do remember the sense of irony I felt about Hannah ordering her class ring and getting her letterman jacket within minutes of hearing the news that her cancer had returned with a vengeance. At the time, we honestly didn't even know if she'd live long enough to actually receive the class ring she'd just ordered, much less be a part of the Class of 2010, like her jacket said. I do know that that day really shook us. But again, at some point during that terrible day, the four of us sat down together and re-committed Hannah's life into God's hands.

You might notice that it seems like we had to continually stop and make a conscious decision to trust God with Hannah's life. That's because we did! Even though we had made a commitment to trust God with our situation back on February 20th, when Hannah's first tumor was found, that decision had to be revisited time and time again as circumstances changed and faith waned. And every time we did that, we would feel renewed peace and even a deep, indescribable joy as we knew He could be trusted to do what was best for Hannah and for our family.

Hannah's Facebook status from ten years ago today: 

"Hannah is shocked, scared, and sad.  My cancer is back ... Please pray for me!  I'm gonna give God the glory!"

My email ten years ago today:

We received Hannah's MRI results this morning, and we are calling all our friends and family to pray. The results showed that Hannah has developed multiple tumors in her brain and spine since her last MRI two months ago. We will be going to Arkansas Children's Hospital first thing in the morning. We will first meet with the oncologist, and then as we understand it, Hannah will start a new chemotherapy regimen. She will receive two different drugs intravenously, and will spend the night in the hospital tomorrow night. We expect to be released on Saturday. She will receive this treatment once a week for four weeks, and then take two weeks off. I think she will have another scan at that point.

Hannah is feeling pretty good right now...and has not been nauseated at all today. She is showing amazing strength and faith, and we give God the glory for that. He is the source of our strength, comfort, and hope, and we know He has our daughter in His loving hands.

We hope to be able to update from the hospital tomorrow. We know that God is in control, and He is good all the time....

Jill and Brad

"Just To Make Sure"

This post is #103 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.

September 24, 2008

The fall of 2008 had started off so well. Hannah had completed her radiation treatments. She had started her junior year of high school and was making straight A's, as she always had. She was into her fourth month of an oral chemotherapy drug that we believed she would be finished taking after a year. She had had three "all-clear" brain scans. I had not yet "googled glioblastoma", as advised by her oncologist.  And, best of all, we were living in the heightened awareness that an experience with cancer can bring ... filled with appreciation for every moment we had together as a family, truly realizing for the first time how fragile life can be. We were enjoying our closer relationship with each other and with God.

But, as the calendar turned to September, I began to detect almost imperceptible signs that something was not quite right with Hannah. I can't even explain what I was seeing ... I really don't even know what it was specifically.  But I remember crying to Brad one night (actually several nights) that I felt like she was leaving us, bit by tiny bit. Then, as September neared its end, Hannah began to experience waves of nausea.  She had experienced queasiness and nausea on and off since prior to her diagnosis in February of that year, but this was different.  We waited for a few days, thinking it would pass ... thinking it was due to the chemo drug she was taking five days out of every month (she was in the middle of those five days when it started). We also thought it could be a stomach virus, because there was a vicious one being passed around in our community at that time. But when it didn't pass, I called our oncology nurse at Arkansas Children's Hospital. She talked to our doctor, and they decided to move up her MRI appointment. Hannah had just had a clean MRI about seven weeks earlier, and she wasn't scheduled for another until September 29th, but five days before that, on September 24th, we found ourselves in the basement at ACH, getting ready for Hannah's turn in the tube.

There were lots of kids getting MRIs that day, and Hannah's turn did not come until 5:00 pm. At ACH, parents are able to sit in the MRI room while their children are being scanned. Because of the strongly magnetized tube, you have to leave your watch, keys, cellphone, etc. in a locker, and then you sit in an uncomfortable plastic lawn chair (you know, the ones you can get a Dollar General for five bucks) near the door. They hand you a set of earplugs and then close that big door. The temperature in the room is uncomfortably chilly because it apparently gets very warm inside the MRI tube during the scan. After the first MRI, I learned to always wear a hoodie, no matter what the temperature was outside. Bethany came with us that night, but no one under 18 is allowed in the MRI room, so she and Brad waited outside in the waiting room, while I sat alone in my cheap plastic chair.

There is nothing like seeing your child being prepped for a medical procedure and feeling like a helpless observer. Whether it's a surgery, a scan, a chemo infusion, a radiation treatment, or even routine bloodwork ... it's hard to watch. I stood beside Hannah that night and watched as they meticulously positioned her on the table, strapped her in, put headphones over her ears, and placed a folded washcloth over her eyes (she always asked for that ... it helped her keep her eyes shut). Then I sat in my chair by the door as the table slid into the tube and the jackhammer sounds of the MRI began pounding in my head. All I could see now were Hannah's feet. And I wondered ... not for the first time ... how she could lie in that tube, unmoving, uncomplaining, with no sign of fear, knowing that the results of this scan could indicate whether she would live or die?  How does anyone do that, much less a 16-year-old girl?

I was thankful that night that we were only scheduled for a brain MRI, which takes about 45 minutes, more or less. Those 45 minutes seemed to take forever, but finally the clacking of the MRI machine stopped. I waited for the team to come into the room, push the button, slide Hannah out of there and set us free, but they didn't come in right away like they usually did. In fact, it was several minutes later before they finally came in, and they told me that they had decided to scan Hannah's spine, too ... "just to make sure." They slid her out of the tube, explained to her that it was going to take a little longer, asked her if she needed to go to the bathroom. Of course, she did ... she always needed to go to the bathroom when she got MRIs ... and while she was in the bathroom, I found Brad in the waiting room and told him what was going on. And we knew ... we knew ... that this was not good.

After the trip to the restroom, Hannah got back up on the table, I watched them prep her again, and the incessant jackhammer sound started back up. I remember sitting there frozen (not because of the room temperature), unable to think, unable to read, unable to pray. Just breathing was an effort. An interminable hour and fifteen minutes crawled by, and finally we were done. The team came in, all smiles, and set Hannah free so she could go get dressed. We peppered them with questions while she was gone ... Why the unscheduled spine scan? Why did it take so long? What was going on? Of course, they could tell us nothing. They did tell us that they had talked to her doctor during the scans and that he had instructed have them to scan everything, as they said, "just to make sure."

It was about 7:30 p.m. before we started the trip home. We were all nervous, knowing that things had not gone the way we expected them to that evening. We managed to convince ourselves that the doctor was just being cautious, and discussed how fortunate we were to have a doctor that was willing to go the extra mile "just to make sure." We spent some time in prayer together as a family that night, again determinedly placing Hannah in God's hands, knowing that we could trust Him with her future. Sleep was evasive that night, though, knowing that we would most likely be getting results the next day. I knew, in my heart of hearts, that the results would not be good.

My email from ten years ago tonight ...

We just got home from Children's Hospital. We arrived there about 3:30 this afternoon, and Hannah had an IV put in and her blood drawn. The MRI started about 5:00, and lasted for about two hours. They scanned both her brain and her spine. We do not have any results yet, but hope to hear something in the morning. Thank you for your prayers and your many emails and phone calls of encouragement ... we will update again as soon as we have some news.

God is good, all the time!
Jill and Brad

Tears at the Beauty Shop

This post is #102 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.

September 23, 2008


I'm not normally a crier...I hate to cry in front of people, even my own family members. I don't even cry very often when I'm alone. But there are times when the tears get started and they just won't stop.

Ten years ago today was one of those days.  I had an appointment to get a haircut that day, and I almost canceled it because Hannah was still so sick.  But I decided to go ahead and go ... I had a feeling it would be awhile before I had another opportunity for a hair cut.

It had been seven months since Hannah's surgery, and she had had several reassuringly-clear MRIs. But the intense nausea she had been experiencing over the last several days along with increased dizziness and some balance issues had become very alarming, and an MRI was scheduled for the next day.

Ever since our trip to Tulsa for the American Idol concert, I had known, deep down inside, that the cancer was back, and I was already beginning to see signs that Hannah was leaving us bit by bit.

I walked into the beauty shop that day and the first thing my hairdresser asked was how Hannah was doing. I immediately started crying and did not stop the whole time I was there.  My appointment included highlights and a haircut that day, so I was there for a long time.  It wasn't a sobbing, noisy kind of crying ... just a steady flow of tears that I could not stop.  I clearly remember feeling the tears running into my ears as the beautician washed my hair in the sink.  Since I am incapable of talking while I'm crying, I couldn't even tell her about the MRI scheduled for the next day. In fact, I'm not sure I even spoke to her the whole time I was there.  I just cried silently.

Thankfully, she understood, and kept up a one-sided flow of words the whole time, without requiring anything from me.  I can't imagine what the other customers thought about me.  I was so relieved when the appointment was over and I was finally able to escape.

I knew.  I just knew.

None of this foreboding was revealed in my email ten years ago today ...

Well, Hannah woke up sick again this morning, so we are heading to Children's Hospital tomorrow to see her doctor there. She was supposed to have an MRI on September 29th, but the doctor has re-scheduled it for tomorrow afternoon. He wants to be sure the continued nausea is not related to any changes going on in her brain. We still feel reasonably certain that the nausea is due to a stomach virus, but it will be good to get it checked out. Please join us in praying for clear MRI scans tomorrow!

Isaiah 26:3 - You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.

God is good, all the time! Thank you for your prayers!
Jill and Brad

Stomach Bug ... Or Chemo?

This post is #101 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.

September 22, 2008

It never fails.  Shortly after school starts back every fall, there's a bout of stomach virus that goes around.  With kids once again in close proximity to one another in crowded classrooms, the dreaded bug seems to spread like wildfire.  Few are spared its ugly effects.

In the fall of 2008, the stomach bug made its way to our home, and Hannah was its first victim.  At least we thought it was the stomach virus.  It was hard to tell, because it struck right in the middle of her chemo week, and it lingered on and on.  The Temodar drug she took always caused some nausea, but not like this.  She even commented about it on her Facebook page ... "Hannah wants to feel normal again ... this stomach virus will just not go away!"

Maybe it was just the cumulative effect of four months' worth of chemo.  Or maybe it really was a stomach bug.  If so, we figured it was just a matter of time until the rest of us were down for the count.

My email from ten years ago today ...

Hannah finished her fourth round of chemo this week, but it's been complicated by a bout with the stomach virus. Her first two days of chemo went pretty well, just some fatigue, and then things went bad. She woke up about 2:00 Friday morning really sick. She felt really bad all day Friday and Saturday, but seemed much better yesterday (Sunday). She went to school this morning, but then had to come home because she was really feeling sick again. We are not even going to get our weekly bloodwork today, because I think the drive to the doctor's office would be awfully hard on her. I've been in contact with Children's Hospital, and the nurse there told me they've seen several kids who have had the stomach virus for four days...which is how many days Hannah has been sick now. Thankfully, she was able to keep down her Temodar (and she's finished with that now) and has been able to eat and drink at least a little bit over the last few days. Our main concern at this point is dehydration, so please join us in praying that her stomach will settle, and that she'll be as good as new soon!

Thank you so much for your prayers...they continue to carry us day by day!

"Praise be to...the God of all comfort...who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." I Cor. 1:3-4 NIV

God is good, all the time!

Jill and Brad

Hannah's Story ... In Her Own Words

This post is #100 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.

September 18, 2008

Ten years ago today, Hannah turned in a rough draft of an essay to her second period English teacher.  The students had been assigned the task of writing about an experience that impacted their life.

Here is Hannah's story in her own words ...

My head hurt so badly that my eyes and back were throbbing.  My eyes were so dilated that you could barely tell what color they were.  I was suddenly seeing double and having spurts of dizziness.  This had been going on for about 2 weeks, and Tylenol and Drixoral did not better my symptoms in the least.

My parents were worried, for they had never seen anything like this.  After going to the doctor multiple times and getting no cure or answer to what was wrong with me, I was finally referred to an ophthalmologist.  I suppose I was a mystery diagnosis that he finally gave up on.  My symptoms were also a complete mystery to my ophthalmologist, so he referred me to have an MRI on the brain.  I remember him telling me, "I really don't think anything will show up on the scans, but if you were my daughter I would want to make sure you were clear." 

The next day I was lying in the freakishly small MRI tube, as scared as could be.  I had no clue what I would be told that day, but I was hoping to be told that it was nothing, just a severe migraine headache or something.  After the test was over, I noticed how extra nice the technician was to my mom and me.  She sent us down for a free lunch in the hospital cafeteria, and then told us to come back to the MRI suite when we had finished eating and to take our time.  When we came back, she pulled our chairs very close together and told us to make ourselves comfortable.  I then noticed that she was acting strangely, and being a little too friendly.  My mom noticed it too, but reassured me that she must do this for everyone and it was simply procedure.  I didn't buy it.  The next thing I knew, the technician returned and said that our ophthalmologist was coming over to talk to us.  That scared my mom and me to death! 

He came in with a very serious and sad expression, and took a seat in front of us and told me the news that would change my life forever.  I remember him saying, "Well, I've looked at the scans, and there is something rather large in your brain.  It is not normal, and it will require further treatment, but it is what it is, and we will have to deal with it and fight it."  With his words, my heart started to beat so fast, and tears were pouring down my face.  I looked at my mom and she was crying too.  Then he prayed with us, and I felt a rush of peace like no other.  It was like God was telling me that everything would be okay, and that I would make it through it.  That afternoon, my mom and I faced the struggles of telling family members about my brain tumor.  My dad, sister, and grandparents probably took it the worst.  It was a Wednesday night, so word got out fast at churches, and they had prayer sessions.

The next morning, my mom, dad, sister, and I were off to Arkansas Children's Hospital where they admitted me to a hospital room right away.  Many of the doctors were worried about the pressure in my brain, so they placed an emergency shunt kit on my bedside table.  This would allow them to quickly make a hole in my skull to drain off excess fluid if needed.  Throughout the few days before brain surgery, I was flooded with love and support from friends, relatives, teachers, and people that I didn't even know.  My hospital room was completely filled with visitors, stuffed animals, flowers, balloons, and snacks around the clock.  I loved the company at the time, because I had nothing else to do.  They lifted my spirits.

After reading the risks involved with the surgery, I was very nervous.  I really did not want to know that there was a possibility of death or blindness involved.  I kept telling my parents that I hoped I would be the same person after surgery, and that it would not change my personality.  That was probably my worst fear.  Before being rolled out on the morning of the surgery, I told all my family that I loved them, and that I hoped that I would be the same person coming out.   I kept on praying that the surgeons could remove the whole tumor, and not damage my brain doing so.  I went into surgery nervous, but with the highest hopes.

I clearly remember being rolled out of surgery, barely conscious.  The surgeon was at my head and I asked, just having the energy to say, "Is it gone?"  He said, "Yes, Hannah, it's all completely gone."  After hearing those words, tears started rolling off my cheeks.  I was just so relieved and thankful that everything went well.

Next, I had another hurdle to jump over:  recovery.  Before surgery, I had just been thinking about getting through surgery, and had not really thought of what I might feel like post surgery.  It was awful.  My neck was so stiff that I could not move it at all, because the surgeons had cut through my neck muscles.  That meant I had to have help doing basically everything.  I would never think that one would use their neck that much, but when its function is lost, it's obvious!  I also could not lift my eyes, because they had to cut through my eye muscles as well.  It was so awful that I could not raise my eyes to watch the television from my bed.  I suddenly did not want any visitors, because I felt like I looked so awful.  I certainly did not have enough energy to be smiley and bubbly in order to entertain guests.  I knew, though, that very soon I would get the go ahead to go home.  I was so excited, because I had not stepped foot from the hospital in almost three weeks.

The day I went home, I wanted to kiss the floor!  If only I could have gotten my neck to bend, I would have.  All of my extended family that could have been at my house were there, complete with their welcome home signs, streamers, balloons, hugs, and kisses.  At that moment, I realized how truly blessed I was.  I had wonderful friends, family, faith, and a life to live!  If those doctors would not have been at Arkansas Children's Hospital, I might not have been alive today!  Little did I know, my main surgeon is one of the three doctors in the world that would have even attempted surgery in that region of the brain, and the brain tumor happened to be a very malignant type of fast growing cancer.  Even though it was a horrible time in my life, I would not wish to go back in time and erase it from my memory.  It taught me so many valuable experiences, like how precious life is and how truly blessed I am.  I would not trade it for anything.

Right on Target

This post is #99 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.

September 15, 2008

We arrived home from the American Idol concert experience on Sunday evening.  The remnants of Hurricane Ike had blown themselves out and so had the storm in my mind ... at least somewhat.  Monday brought our regular clinic visit for blood work and some much-needed reassurance that things were going well. 

My email from ten years ago today reveals no trace of the disquiet simmering just beneath the surface ...

Good news … Hannah’s counts were high enough today for her to start her fourth round of chemo this week! This is the first time she has actually been on schedule to take it when she’s supposed to (should be a 5 day on/23 day off schedule). We’ve always had to wait for her platelets to get high enough for her to start back, but they were right on target today. So, she will take her first dose Tuesday evening and continue through Saturday evening. That means she will probably have some nausea and fatigue Wednesday through Sunday of this week. Last month was not too bad, though, so we are hopeful that this month will be even better! Please pray that the side effects will be minimal, and won’t interfere with school too much. After this week, she’ll have just six more rounds to go!

Your prayers mean so much to us….more than we can ever say! Thank you for being so faithful to pray for our family.

God is good, all the time!
Jill and Brad