My Hero

This post is #81 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.

May 31, 2008

I remember the exact moment my teenage daughter became my hero. She had already been through brain surgery, 33 radiation treatments, and several MRIs. She had begun an oral chemotherapy protocol where she took a dose of a drug called Temodar for five days out of each month. She had to swallow five large capsules (what I would call "horse pills") each night before bed.  They were so large, she had to swallow each one individually.  The next morning, she would usually wake up very sick, and then remain drained of energy all day.  I would watch her take those pills, one at a time, and wonder how she could do it. How can you force yourself to swallow something that you know is going to make you so sick ... not just once, but five times ... and for five days in a row?  I distinctly remember watching her one evening, taking one pill after another, very matter-of-factly and without complaint, and thinking for the first time, "She is my hero."  Taking those pills was really a small thing, in light of all she went through during the year of her illness, but to me it was truly heroic.

My email from a decade ago ...

I have some specific prayer requests to share with you tonight. As of today, Hannah has taken three days of her first five-day chemotherapy treatment. The first day, she was slightly queasy…yesterday, she was a little more queasy…and this morning, she was very nauseated and very sick. She’s feeling a little better this evening, but at bedtime tonight, she’ll have to take another dose (actually five pills) that she knows will make her sick tomorrow. That’s a very difficult thing to do. Then tomorrow night, she’ll have to do it again. And she’s got eleven more rounds of this treatment to go! Please pray for her strength as she takes this medication, and for relief from the nausea. Also, please pray that she will not become discouraged as she faces the months ahead.

Thank you again for your prayers…and for the many encouraging emails you send. We are not able to personally answer all of them every time, but please be assured that we are reading all of them, and God is using them to strengthen us and Hannah. He truly is good all the time!

Jill and Brad

The Next Step

This post is #80 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.

May 28, 2008

Hannah had finally completed her radiation treatments, triumphantly capped off by an "all clear" MRI report, and our family settled into a much more normal lifestyle.  We enjoyed a nice stretch of days where the girls were both attending school regularly, Brad and I were back at work, and we were able to resume our typical family activities.  For the time being, at least, we could push our concerns about Hannah's health off the front burner.  It felt like we had surmounted a huge hurdle by getting this first round of treatments behind us.

However, in our more lucid moments we knew we were really just at the beginning of this battle.  We had been told that Hannah would take an oral chemotherapy drug five days out of every month for twelve months.  And when those twelve months were up?   Well ... the doctors were a bit vague on that point, but basically we were told that we would be finished.  We assumed that was when Hannah would finally be considered cured. 

Ten years ago today, she started this twelve-month period.  Here's my email from that date ...

Just a brief update tonight…Hannah had her bloodwork done yesterday, and her platelet count was up to 111,000, which was a great improvement over the 62,000 she had last week. So, that means she gets to start her chemo drug back tonight. She will take the drug for five days, then have 28 days off. This pattern will continue for ten cycles. This is a much higher dose of chemo than she took initially, so please join us in praying that the side effects will be minimal. The biggest side effect of this drug is depressed blood counts, as we’ve already seen. Please pray that her blood counts will stay up, and that she will be able to avoid any infections over the next several months.

Again, thank you so much for your continued faithfulness in prayer for Hannah and for our family. God is truly good, all the time!

Jill and Brad

MRI Day ...

This post is #79 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.

May 19, 2008

MRI Day was finally here.  Everything felt so surreal as we made our way into the bowels of Arkansas Children's Hospital to the MRI area.  There's something very jarring about watching your daughter being strapped down to a narrow table and then slid into a claustrophobia-inducing tube ... especially knowing that the results of these scans could potentially forecast life or death for her.

Thankfully, ACH allows parents to stay in the room with their child during MRI scans.  We spent a lot of time over the next several months sitting on flimsy plastic chairs in the corner of that chilly room, nervously holding hands and whispering prayers with the jackhammer sounds of the MRI machine clanging in our ears.  And every time, when the scan was complete and the technician came in to release Hannah from her bonds, we would look deeply into his or her eyes to try to get a hint of what they may have seen on their screen.  But those folks were good ... They must spend a lot of time practicing those impassive I'm-not-revealing-anything facial expressions.   Most of the time, though, we would find out the MRI results the same day from her oncologist, so we didn't have to wait long!


My email summary from that day ...

We just arrived back home after a long, but good, day at Arkansas Children’s Hospital. We are praising God for a good MRI report! The doctor said there was no sign of the tumor returning or of any other problems. She was very pleased with what she saw.

We did have a little bit of a scare with Hannah’s blood counts. They put in an IV when they did the MRI because they had to use a contrast dye for that procedure. They first tried to put it in her arm, but that vein quickly blew, and they ended up putting it in the back of her hand. They left it in so that it could be used for the blood draw which we knew would be coming later on. Well, when they tried to draw blood through that IV later on, it was really a struggle. It took forever, and they had to keep flushing the IV with saline to get it to work right. Anyway, when the doctor came in with the results of the bloodwork, she told us to get ready for a platelet infusion, because her platelet count had dropped from 60,000 last week to 9,000 today! After we explained to her about the problems they had had getting the blood drawn, she decided that maybe it was a bad sample, so she ordered another one. By this time, the IV had been removed, so they stuck Hannah two more times (unsuccessfully) in an attempt to get a vein, and finally did a finger stick and got enough blood drop-by-drop to do another platelet count. Thankfully, this time it was at 62,000, so no transfusion of platelets was necessary!

They also gave Hannah a breathing treatment while we were there today. This also caught us a bit off guard, because she has not had any respiratory problems at all. They explained to us that when a person’s blood counts are low, they are at especially high risk for a particular kind of pneumonia, and this was an antibiotic treatment to ward off any possible infection. She will have this type of treatment once a month for the duration of her chemotherapy program.

Today we found out a little bit more about the future of Hannah’s treatment program. Once her platelet count gets high enough (a minimum of 75,000) she will start back on her chemo drug, and she will take it for five consecutive days, then have 28 days off, then five days on, 28 days off, etc. At least, that is the plan. The doctor explained that if her counts drop again, she’ll have to have more than 28 days off in between treatments. She will have to have ten of these five-day chemo treatments, so she said we could figure on about a year’s worth of treatments ahead. When she took the chemo drug before, it was at a strength of 160 mg per day…now it will be at a strength of 340 mg per day. She assured us that it should not cause hair loss or too many other side effects, other than problems with blood counts, so Hannah’s blood will be monitored closely.

Even though Hannah has a lot ahead of her, we feel that we reached a major milestone today by having a clean MRI report. Once again, we are so thankful to God for carrying us to this point, and know that He will complete the good work He has started in Hannah. And we are so thankful to all of you who read these email updates, for being so faithful to uphold us in prayer before Him.

God is good, all the time!
Jill and Brad

Scanxiety!

This post is #78 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.

May 18, 2008

Hannah's blood transfusion rejuvenated her to such a degree that it was almost possible to forget she was sick ... almost.  There was a big reminder hanging over us, and that was her upcoming MRI.  Every cancer patient and his or her family understands the term "scanxiety", and there was definitely some of that going on!  This would be her first MRI since the day after her surgery, and the results would tell us a lot about how successful the surgery had actually been and whether or not her treatments so far had been effective.  In spite of the inevitable scanxiety, I remember feeling fairly confident that everything was going to look good on these scans.  I also realize, looking back, that the true gravity of what we were facing had not yet set in.

My email from ten years ago today:

Just a quick update and prayer request tonight…

Hannah has felt good this week, ever since her transfusion on Tuesday. Her energy level has been much better and her appetite has really improved. She has obviously been feeling much more like herself than she has since all of this began back in February. Tomorrow morning she is scheduled for an MRI, which will be the first she’s had since the day after surgery. Please join us in praying that results will confirm that the tumor is completely gone and that the radiation and chemotherapy has done its job in keeping it from coming back. After the MRI, we will be meeting with the oncologist to hear more about her future course of treatment.

Thank you so much for your prayers…we are still so humbled and overwhelmed by the emails, cards, phone calls, and gifts our family has received during this season of our lives. God has truly been faithful through the storm, and He is good, all the time!

Life-Giving Blood

This post is #77 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Photo from visualhunt.com

May 13, 2008

Up to this point, Hannah had handled everything that had come her way with remarkable aplomb ... the discovery of the tumor, brain surgery, radiation, chemotherapy, weekly blood draws ... but the news that she would have to have a blood transfusion really threw her for a loop.  She didn't know what to expect, and was quite nervous about the procedure.

I called a friend of mine who has frequent blood transfusions due to chronic low iron, and she was able to talk with Hannah and reassure her somewhat.  She told her what she might expect and how much better the infusion of fresh red blood cells would make her feel.  I'm not sure Hannah was entirely convinced, but it did seem to calm her anxiety somewhat.

As the transfusion got underway that afternoon, I couldn't help but consider the parallels between the blood Hannah was receiving and the life-giving blood Jesus shed for us on the cross.  Her body had become depleted of what it needed to survive, and there was absolutely nothing she could do on her own to make things right.  She found herself completely dependent upon the blood of an anonymous donor to restore her to physical health.  The transformation that took place as those red blood cells flowed into her veins was nothing short of remarkable.

In the same way, there is nothing we can do on our own to make things right with God.  The Bible tells us there is no righteousness apart from the shedding of blood (Hebrews 9:22).  But this blood doesn't come from any anonymous donor ... It comes from the Son of God Himself!  And when we accept His sacrifice by faith, His blood restores us to spiritual health.  And even as Hannah's physical health was still compromised, it was a comfort to know that her spiritual health was strong.

Here's my email from ten years ago ...

We are rejoicing tonight that after receiving two units of blood today, Hannah is feeling much better! We arrived at the hospital at 9:00 this morning, she began receiving the blood about 11:45, and we left the hospital at 4:30. On the drive up this morning, Hannah was very quiet and listless; on the way home, she was laughing and talking…and hungry for the first time in a while! What an amazing difference! Please join us in praying that this transfusion will give her blood the boost it’s been needing and that her counts will continue to improve from this point on. Your prayers have certainly carried us through on a day by day basis…Thank you!

God is good, all the time!

Jill and Brad

Answers ...

This post is #76 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.

May 12, 2008

Thankfully, clinic day brought some answers for Hannah's ongoing malaise.  Here's my email from ten years ago ...

Well, it’s Monday, so that means bloodwork for Hannah. But first, let me back up and fill you in on the last few days. Hannah has been running a low grade fever since last Tuesday, and has been experiencing a great deal of fatigue over the last few days. She even missed three days of school last week, more than she missed the whole time she was undergoing radiation and chemotherapy. 

Today’s bloodwork showed an increase in her platelet count (up to 60,000 from 40,000 last week), which is great, but there was a rather significant drop in her hemoglobin count. The oncology nurse explained that this is probably the cause of the symptoms she’s been having, and Hannah now has an appointment to have a blood transfusion at Children’s Hospital at 9:00 tomorrow morning. She said that she believes this will make Hannah feel much better.

We are so thankful that we have an answer to the symptoms Hannah has been having and that it is something relatively easy to “fix”. We are also so thankful for all of our friends and family who faithfully lift us up in prayer before the Great Physician. And we are so thankful that we serve a God who is good, all the time!

Jill

A Disappointing Evening

This post is #75 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.

May 11, 2008

The day we'd been waiting for had finally arrived.  Yes, it was Mother's Day, but more than that, it was Carrie Underwood Concert Day!  Hannah had been a huge fan of Carrie's ever since she first walked onto the stage to audition on American Idol.  She had her picked as the winner from the very beginning of that season ... and spent two hours on the phone after every episode voting for her to make sure she was the winner.

When I first heard that Carrie was coming to Little Rock for a concert, I hesitated to buy tickets right away because I wasn't sure where Hannah was going to be in her treatment protocol.  Once I realized that the timing of the concert would coincide perfectly with the break between her initial round of treatments and the beginning of her second, I bought three tickets, and the planning for our girls' trip commenced.

Hannah had not felt well for several days leading up to this date.  She'd missed a few days of school and had not been well enough to participate in her choir's Alice In Wonderland performance.  As much as she loved Carrie Underwood and was looking forward to this concert, though, I just knew she was going to be ready to go.

But once again, she woke up that morning not feeling well.  We stayed home from church so she could get as much rest as possible, hoping she could build up some stamina for the concert that evening.  Mid-afternoon found her still lying on the couch, too lethargic to even sit up for long.  Clearly she would not be able to attend the concert.  In fact, she didn't even want to go to the concert.  She assured us that she didn't mind if Bethany and I went without her ... but that wasn't even a consideration.  Neither Bethany nor I had any desire to go if Hannah wasn't going with us.

So while Carrie Underwood rocked Verizon Arena, we spent a quiet Mother's Day evening at home.  My heart was heavy with the awareness of just how sick Hannah really was, even though she never really let it show.  I couldn't have known then ... nor would I have wanted to know ... that that would be our last Mother's Day together.

Our regular weekly appointment at the Children's Hospital Hem/Onc clinic was scheduled for the next day, and I couldn't wait to get there and find out just what was going on with our girl.

One Less Flower

This post is #74 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.

May 9, 2008

The debut of the Magnet Cove High School Choir's performance of Alice in Wonderland was scheduled for this evening ten years ago.  Hannah had missed a lot of the practices due to our numerous trips to Little Rock for radiation treatments and doctor's appointments, but had a small role as a flower.  She had always enjoyed theater and drama, performing in several plays when she was younger, and she had been looking forward to this performance.

But shortly after her last visit to the Hem/Onc clinic, when everything was looking so bright and sunny, she inexplicably began to struggle with fatigue again.  She became pale and listless, and didn't want to attend school.  That's how we knew she was really feeling bad!  The day before the Alice in Wonderland performance, she asked me to call her choir director and let her know that she would not be there to play her role.  Thankfully, they could get by with one less flower.

We were concerned, of course, but not overly so.  We knew she had been through a lot over the last couple of months and had really been pushing herself hard to stay involved in everything.  It seemed that she had finally reached her limit and was just worn out.  I was fine with her staying home from school and just resting for a change.  After all, the Carrie Underwood concert was coming up that Sunday and I wanted her to be well rested so she could fully enjoy that!  We three girls were so looking forward to that celebration of the completion of her first round of treatments.

A Bright and Sunny Road Ahead

This post is #73 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.

May 6, 2008

At this point in Hannah's treatment, we were really enjoying living a "normal" life.  We were nearing the end of the school year, and were fully involved in all the busy-ness that brings.  Between the two girls there were field trips, track meets, academic banquets, and cheerleading tryout meetings.  Hannah was in the high school choir, and they were preparing for a performance of Alice in Wonderland.  She didn't have a big role because she had missed so many practices ... but she was determined to be the best flower she could be!  Most of all, she and Bethany were excited about the Carrie Underwood concert coming up in Little Rock that Sunday evening (which also happened to be Mother's Day) ... a special treat we had planned to celebrate the end of Hannah's radiation treatments.  The road ahead at this point looked bright and sunny!

Here's my email from ten years ago today ...

There have been few “Hannah” updates lately, because thankfully, there has been very little to report! She had her weekly bloodwork done in Hot Springs yesterday afternoon (one stick!) and we received the results today. Her platelets have risen to 40,000; still far below the normal range of 150,000-400,000; but we are finally on an upward trend! She has been feeling much better since finishing her radiation treatments a little over a week ago. Her energy is slowly returning…not nearly as many naps in the recliner after school. Her appetite has been a little slower in returning…food still just doesn’t taste very good to her. The next big date on our calendar is May 19th. She will have an MRI that day, and we will find out a little more about the rest of her treatment plan.

Many of you have asked about how Bethany is doing, and I’m happy to report that she appears to be pretty much back to normal. She still has an occasional day when she feels tired and worn down, but those days are becoming fewer and farther between. We are so thankful that we are down to the remaining 2 ½ weeks of school…I think we will all really enjoy having some time off!

We are so blessed to know so many people who love the Lord and who love our family. Your prayers have really lifted us up and carried us through the last couple of months! God is truly good, all the time!

Jill and Brad

Focusing On the People In Front Of Me

This post is #72 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.

Well, did you wonder what happened to me?  I'd been doing so well with making my daily posts, and then I became disconnected.  Literally. 

If you've followed this blog for a few years, you are familiar with the While We're Waiting ministry, which God birthed out of our experience with Hannah's cancer journey and subsequent homegoing.  I will share more specifics about the WWW ministry in future posts, but basically the cornerstone of the ministry is the retreats we host for bereaved parents.   Until very recently, all of these retreats were hosted and facilitated by the four co-founders of WWW, primarily in Hot Springs, Arkansas. 

This past weekend, we hosted our first While We're Waiting Weekend for Bereaved Parents in the Pacific Northwest.  We were based at the Ochoco Christian Conference Center, which was in a beautiful and very rural location in central Oregon.  So rural, in fact, that there was no cell phone service and no wifi.  For a person who spends the majority of her day sitting in front of a computer screen replying to emails, processing registrations, and monitoring our WWW facebook pages, this was quite a change!  Quite a refreshing change, I dare say.  It allowed me to slow down and focus on the people who were actually right in front of me.  I did have a couple of very brief intervals of wifi at the camp office, but certainly not enough to compose and publish a blog post.

Over the next few weeks, my posts will be intermittent.  My brother and sister-in-law and their two children, who are on a brief furlough from an overseas mission field, will be staying with us for several days next week.  Bethany, who is now all grown up and married, will be graduating from dental hygiene school in a couple of weeks, and she and her husband will be joining us on a nice vacation to celebrate her accomplishment.  I'll be posting a few decade-old emails over the next few weeks as I continue to process through the events of Hannah's year of cancer ... but for the most part, I plan to focus on the people in front of me.