Saturday, September 29, 2018

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

Thursday, September 27, 2018

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.

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. 

Wednesday, September 26, 2018

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

Tuesday, September 25, 2018

"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

Monday, September 24, 2018

"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

Sunday, September 23, 2018

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

Saturday, September 22, 2018

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

Tuesday, September 18, 2018

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.

Saturday, September 15, 2018

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

Thursday, September 13, 2018

A Building Storm

This post is #98 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 13, 2008

At this point in time, it seemed as though things couldn't be going better as far as Hannah's cancer treatments were concerned.  She was coping well with the side effects, her platelet issues had leveled out, and she was in a good routine at school.  Her bimonthly MRIs resulted in an "all clear" every time.

It was time to have a little fun.

So ten years ago today, Hannah, Bethany and I went to the American Idol concert in Tulsa, Oklahoma. If you've followed Hannah's story, you know that she was a huge American Idol fan. She watched the show faithfully from the second season on (the Ruben/Clay year). She was one of those fans who would pick a favorite and vote for two solid hours every Tuesday night. From the third season on (the Fantasia/Diana year), we went to the American Idol concert every year. We would always plan our trip to arrive early in the afternoon and hang out around the venue trying to meet the singers ... and we were usually successful, getting lots of autographs and pictures with her favorites every year.  It was something we looked forward to doing together, and we would always order our tickets the first day they went on sale.

That year's concert featured David Cook (the winner) and David Archuleta (the runner-up), along with the other top eight contestants. I didn't order the tickets right away, because I just wasn't sure how Hannah would be feeling by September.  As the summer went on and I saw how well she was doing, I ordered tickets for the three of us girls.  We were excited about the concert and were really looking forward to it.  Hannah was a big fan of David Cook, and we had followed his story with interest because his brother was also battling brain cancer.

We spent that weekend with Brad's mom and dad, who live in Van Buren, so we would have a shorter drive to and from the concert in Tulsa. This was a blessing, because the weather was awful that weekend. The remnants of Hurricane Ike were blowing through Arkansas and Oklahoma, and we drove to Tulsa in heavy rain and strong winds.

I remember that Hannah seemed somewhat tired when we left Van Buren that afternoon, but that was not unusual, as the primary side effect of her chemo was fatigue. It was too rainy to do our usual autograph-seeking that afternoon, so we went out to eat instead.  I noticed that Hannah seemed a bit relieved that we would not be "stalking" our favorites for a change, even though she had been talking excitedly about it in the days leading up to the concert.

After dinner we headed to the concert venue, ran through the rain to get inside, and showed our tickets to an arena worker, who directed us to the stairs. As we walked up the stairs, Hannah mentioned that she felt a little dizzy. This also was not really unusual ... the radiation treatments had left her with a constant feeling of being "off balance"; in fact, her world was never completely level.

We finally found our seats in the very top row of the arena. And I do mean the top row; the only thing behind us was the wall. The delay in purchasing tickets had put us in the nosebleed section. As we sat waiting for the concert to start, Hannah again mentioned that she was dizzy, and we attributed it to the dizzying height at which we were sitting and the long climb up the stairs.

Hannah was unusually quiet during the concert ... not singing along and yelling for her favorites like she usually did.  Right about the time David Cook came out to sing (the winner was usually saved for last at these concerts), she asked if we could leave. We immediately stood up, descended the dozens of stairs, and began the long drive back to Van Buren. We still had the incredibly heavy rain and the tropical storm force winds to contend with, and now it was pitch dark.  But that's not really what made the trip feel so long.

As I drove through the stormy weather that night, a storm began to build inside of me.  While the car was battered by the weather and the girls dozed in the back seat, the realization gradually grew in me of how seriously ill Hannah really was.  For the first time, my mind began to entertain the possibility that Hannah might not survive this.

At the time, as far as we knew, Hannah was cancer free.  The clear MRI just six weeks earlier was surely proof of that.  But deep down inside, I knew ... I knew something was not right.  It was the first time I felt like we might be losing her.  I allowed the tears to flow silently as I drove through the storm that night ... but by the time we reached Grandma's house, I had tucked these secret thoughts and fears back into a little filing cabinet in my mind and locked them away.  Time to dry my face and carry on.  Hannah was going to be fine.

Saturday, September 8, 2018

A "Typical, Happy, Healthy Sixteen-Year-Old Girl"

This post is #97 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 8, 2008

At this point, Hannah was pretty much sailing through her treatments ... in fact, those were her oncologist's exact words!  Other than the fact that her hair was still a little thin in spots due to the radiation treatments, nobody would have guessed that she was battling brain cancer.  She was at school every day, only missing for clinic appointments, and keeping her streak of straight A's going strong which was very important to her!

You can see from my email from ten years ago today that we were feeling very good about where we were at this point in this process ...

Hannah had her routine monthly visit to Arkansas Children’s Hospital this morning, and it went really well. As usual, the doctors and nurses were amazed at how healthy Hannah looks and feels as she goes through this experience with cancer. And it’s true! She looks (and feels!) like any typical, happy, healthy sixteen year old girl. Thank you, Lord, for this blessing!

Her blood counts were all pretty good today, although her platelet count has dropped, as expected at this point in the chemotherapy cycle. If we follow the pattern of the last few cycles, though, it should be high enough by next week for her to start her chemo medication again, on schedule this time! We’ll find out for sure next Monday. Our next hurdle, after that, will be her next MRI, which is scheduled for September 29th. We are already praying for a clear scan, with no sign of tumor regrowth.

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!
Jill and Brad

Sunday, September 2, 2018

Shopping With My Girls

This post is #96 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 great joys of having daughters is the shopping.  When they're little, the fun part is shopping for them ... then as they grow up, it's great fun to shop with them.  I always loved shopping for the girls ... matching outfits, white lacy socks, Easter dresses, shoes, prom dresses ... but shopping with them is even better.  Bethany and I still have a great time shopping together.  In fact, a shopping spree is her most-requested birthday gift now that she's all grown up!

Hannah and I were also good shopping buddies ... the last year or so that we shopped together, she took it upon herself to move her mom out of the '90's the '80's.  She really enjoyed critiquing the outfits I tried them on and giving me fashion advice.  I loved it.  One of her favorite shows was "What Not To Wear" (after American Idol, of course!) and she always laughingly talked about submitting my name to Clinton and Stacey.  I apparently needed more help than even she could give me!  :)

Ten years ago over the Labor Day weekend, we enjoyed one of our last opportunities to shop together.  My email from that date ...

September 2, 2008

We are so thankful to have very little to report this week…Hannah’s blood work today was very good, with most counts near normal, and a platelet level of 120,000. Next Monday we will go to Children’s Hospital for our monthly visit, and on September 29th, Hannah will have another MRI. Her school year has gotten off to a very good start, and she has been feeling fine. She does tire fairly easily, and sometimes sleeps for an hour or so after school, but for the most part has been able to go about her daily activities without slowing down. We were even able to take a trip to Mountain Home over the holiday weekend to spend time with family, and squeezed in a shopping trip to Branson while we were there! God has truly blessed our family, and we are so grateful! Thank you so much for your continued prayers!

God is good, all the time!
Jill and Brad