Platelet Problems

This post is #86 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.

June 23, 2008

Until Hannah was diagnosed with cancer, I never really thought very much about platelets.  I suppose I first learned about them in science class in junior high.  I had a basic understanding that my blood was made up of red blood cells, white blood cells, and platelets, and then there was the plasma that all that stuff floated around in.  I even had a general awareness that they had something to do with the clotting of blood.  But I didn't really care about them ... They certainly had no impact on my day-to-day life.

I could never have known what a huge factor platelets would eventually become not only in my life, but in Hannah's.

My email from ten years ago today ...

This morning Hannah had her monthly appointment at Arkansas Children’s Hospital, and all went well. Our first step, of course, was the blood draw, and fortunately, our favorite nurse was there, and she was able to draw Hannah’s blood with only one stick. Then, after quite a bit of waiting, we got to see the oncologist. He was very pleased with Hannah’s progress, and he shared the results of the bloodwork with us. 

All of Hannah’s counts have gone up (her red blood count is in the average range for the first time in a long time!), except for her platelets, which have dropped even lower than they were last week (down to 32,000 from 47,000). She was supposed to start back on the oral chemo drug today, but they will not start it back until her platelets are at least 75,000. He said that it is not unusual for the platelets to drop way down following these early rounds of chemo; and said that over time, as her body adjusts, it shouldn’t be as much of a problem. 

So…we will be postponing her next round of chemo for at least another week. While Hannah is happy about the temporary reprieve, we hate to get too far off schedule with her treatments, although the doctor didn’t seem to think it was a very big deal. The good news is that Hannah is feeling really good right now. Having low platelets apparently does not affect how you feel; it just causes you to bruise and/or bleed easily because platelets have to do with the clotting process. The doctor also gave us a prescription for a different anti-nausea drug, so hopefully when she does start back on the chemo drug, it won’t make her feel quite so bad.

We are so grateful for the doctors, nurses, pharmacists, etc., that God has put into our lives who have really helped us along this road over the past four months. And we are so thankful for all of you who read these emails…many of whom we don’t even know…who pray for our family regularly. Your prayers and encouragement have truly made a difference in our lives. You have truly been a blessing to our family!

God is good, all the time!
Jill and Brad

Grandma and Grandpa Camp

This post is #85 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.

June 16, 2008

Another Grandma and Grandpa Camp was in the books and while Hannah clearly enjoyed the time with her grandparents and cousins, I could tell she was glad to be home.  On the last day of Camp, they visited the Heifer Project just outside of Little Rock, and I drove up to meet them there and bring the kids home afterward.  It was an interesting tour, but it was hot outside, and I could tell Hannah was rapidly running out of gas.  We headed home right after our tour, and I was thrilled to have my girls home again.

Here are a couple of pictures from G and G Camp that year ... As you can see, they really had a great time!  Hannah really liked nothing better than spending time with her extended family.  Those G and G Camp experiences are something that will always be treasured.

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

Time for our weekly update…Hannah had her bloodwork done today, as she does every Monday, and her counts overall were pretty good. Her platelets have really dropped off, from 138,000 last week to 47,000 this week, but I think that is to be expected following chemotherapy. They won’t give her platelets unless they drop below 21,000…but they also won’t let her start her next chemo treatment until they get up to at least 75,000. The best news is that she has really been feeling good over the last couple of weeks. She had a great time with her grandparents and cousins last week, and was able to do lots of fun things, like horseback riding and kayaking. We are so thankful that she felt good and was able to enjoy herself the whole time.

Thank you so much for every prayer you bring to the Great Physician on our behalf. You will never know the impact these prayers have on our daily lives. God is truly good all the time!

Jill and Brad

Not Missing a Thing

This post is #84 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.

June 14, 2008

So I started this year-long series with every intention of writing some kind of post every day ... and I did really well for 71 days straight.  And then, well, you know how it is.  And that's okay.  I hope to get back on to a little more regular schedule in the weeks ahead, although I'm pretty sure it won't be daily, ha!  We'll see how it goes!

Ten years ago today, Hannah took her ACT test.  She had just returned from her G and G Camp week, and was pretty worn out, but she was adamant about taking that test.  She had just completed her sophomore year of high school, and planned to take it several times over the next couple of years, hopefully increasing her score each time so she could get lots of college scholarships.  She didn't feel well that day, and she still struggled with the "falling out of her chair" sensation she'd had ever since completing her radiation treatments, but she did it!  I don't even remember the exact score she got ... only that she wasn't pleased with it, and felt she should have done better.  At that time, we couldn't know that Hannah's ACT score was not going to matter.  We were operating under the assumption that she would complete her treatments over the next year and start college in the fall of 2010.

When Hannah was but a preschooler, she decided she wanted to follow in her parents' footsteps and go to Ouachita Baptist University.  She proudly wore her "Future Tiger" t-shirt and proclaimed to anyone who would listen that she was going to go to Ouachita when she grew up.  As she got older, she never wavered in her decision, even making plans to room with her good friend, Brittany.  Brad and I excitedly looked forward to going to visit her in the dorm (especially since it's only a 40 minute drive down the interstate) and to attending all of her OBU events as proud alumni parents.  I was even going to prominently display one of those "My Daughter Goes to OBU" bumper stickers!  When she died in the spring of her junior year of high school, all that changed.

We still have the opportunity to visit the beautiful campus at Ouachita from time to time, but it's not to visit Hannah or to cheer her on in Tiger Tunes.  For a few years after her death, we had the privilege of awarding the Hannah Joy Sullivan Memorial Scholarship to a rising junior or senior studying in the educational or medical field (two areas in which she had an interest).  We had the opportunity to speak to a "Death and Dying" class last spring, and we've been to a few Tiger Tunes presentations. 

After one of those scholarship-awarding visits a few years ago Brad and I spent some time walking around the campus in the evening. The weather was unseasonably warm, and I've always loved Ouachita's campus at night.  Many things have changed since we were students there years ago, but a lot of things have remained the same, and I'm glad about that.

But, as we walked, I couldn't help but be sad about why we were there at all.  This was not the way it was supposed to be. I should be like all my Facebook friends ... going to visit my daughter at college for a special occasion, excitedly anticipating her coming home for the holidays or the summer, mailing her homemade treats to help her get through finals week.  How did my life turn out like this ... where instead of receiving hugs from my college-age daughter, I was receiving recognition for giving a scholarship that I would much rather not have a reason to give at all?

It was at times like that I had to remind myself that Hannah was not missing a thing by not being a student at OBU. As nice as their new dorms seemed to be, they sure couldn't compare with a mansion in Heaven!  I was the one who felt robbed and cheated by the fact that we missed out on these times with her, and I have to remember that in the eternal scheme of things, I really didn't miss anything either. What's a 3-month visit home for the summer compared to an eternity together in Heaven? There's no comparison!

The sting is still there ... especially as Hannah's friends are now college graduates, starting careers, getting married, and having babies.  She is missed every day ... but she's not missing a thing!

Thankful for "Normal" Life

This post is #83 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.

June 9, 2008

I never knew that life with cancer could be so "normal."  On the days that Hannah was treatment-free, life seemed to go on as it always had.  It was summertime, so we were moving at a little bit slower pace, but there were still school workshops to attend, dentist appointments to keep, cheerleading routines to practice, and basketball camps to sweat through.  We celebrated Bethany's 13th birthday, and life was good.  Hannah was feeling better after having completed her first round of oral chemo ... and best of all, her hair had pretty much stopped thinning as a result of the radiation treatments.

For several years, as their grandchildren were growing up, Brad's mom and dad would host "G and G Camp" (Grandma and Grandpa Camp) for a week each summer.  At that time, they had six grandkids ... all girls.  Hannah was the oldest, Bethany was the second oldest, and they stair-stepped down from there.  It was something the girls looked forward to every year, and it was quickly approaching that summer.  We weren't sure if Hannah would be able to participate ... it would depend upon where she was in her treatment schedule, what her blood counts looked like, how much energy she had, etc.  Thankfully, she was able to go, and I'm so glad her cousins and grandparents were able to spend that special time with her that summer.

My email from ten years ago today ...

Hannah had her weekly bloodwork done today in Hot Springs, and we are praising God for near normal results! All counts were slightly low, but are closer to normal than they’ve been in a long time (with the exception of her white blood count, which was just a little bit lower than it was last week). She has also been feeling much better over the last several days since completing her first round of the higher-dose chemotherapy drug. So much better, in fact, that she and Bethany left this morning to spend a few days with her grandparents and four of her cousins in Van Buren, Arkansas. This is something they do every summer, and we were afraid that she wouldn’t be able to go this summer. We are so thankful that she is feeling well enough and that her counts have held strong enough for her to be able to do something “normal” for a few days!

Again, we are so thankful for your prayers and encouragement! God’s people have been so good to our family throughout the last few months…we can never thank you enough!

God is good all the time!
Jill and Brad

Round One Complete ...

This post is #82 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.

June 2, 2008

Round One of Hannah's oral chemotherapy treatments was complete, and it felt good to get it behind us.  It had been rough ... no doubt about that ... but we had a nice stretch of treatment-free days ahead of us now before Round Two would begin.  We were encouraged.  We could do this for eleven more months if that's what it took for Hannah to be healed.

My email from a decade ago ...

Hannah has finished her first five-day round of chemotherapy…praise the Lord! Thankfully, she has not been as nauseated today, which we hope is a sign that her body will eventually adjust to this higher dosage of chemo. She also had her blood drawn today, and all of her counts are good…not quite normal, but good enough for now. We’ve been told to watch for a possible drop in her counts over the next week or two.

Once again, your prayers have helped us through a difficult few days. We are looking forward to the next 28 days, in which Hannah will be treatment-free, before starting her next five-day round of chemo. God is good, all the time!

Jill and Brad

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. 

A Lighter Load

This post is #71 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

April 25, 2008

Even after ten years, I remember clearly the weight that lifted off my shoulders when we received the news below.  After two months of balancing the twin burdens of daily radiation and chemotherapy treatments, the news that they had come to an end sooner than we expected was a reason to rejoice!  I do remember having a little bit of a question in my mind regarding the wisdom of discontinuing the chemo early, but we had confidence in the doctor's decision.  And, oh, such a relief to think of getting back to some sense of normalcy in our family!  I literally felt a lightness in my spirit that I hadn't experienced in a long time.

My email from this date ten years ago ...

We have many blessings to share with you today, our dear prayer warriors! Today marks two months since the surgery to remove Hannah’s brain tumor, and God has been so good to us!  This was Hannah’s last day of radiation … and we just found out that it is also her last day of chemotherapy, at least for another month!

As you know from the updates, her platelet count has really dropped over the last week. She had new blood work done yesterday, but we weren’t able to stay long enough to visit with the doctor because we had to hurry to our radiation appointment. So this morning I called the clinic to talk with the nurse and find out the details about the platelet situation. She told me that Hannah’s platelets are at 31,000, and they don’t even consider giving platelets until they drop to less than 21,000 (Normal is 150,000 – 400,000.)

Then she told me that the doctor has decided that she can discontinue her chemo drug for now (she only had nine days left out of 42). He believes she has had enough of it for now, and that after her MRI on May 19th, her platelets should have rebounded enough to begin the 5-day-per-month chemo drug. This will be the same drug she’s been taking, just a slightly higher dose. She will take this drug five days per month for ten months. And…yet another blessing…she can begin getting her weekly blood work done in Hot Springs, instead of going to the oncology clinic at Children’s every Monday. That means (Lord willing!) we won’t have to make another trip to Little Rock until May 19th!

So, at least for the next few weeks, Hannah will be treatment-free, and we look forward to her regaining her energy and strength. She has truly amazed us with her positive attitude and her quiet faith through the last two months. Your prayers and encouragement have been a big part of that.

“…Suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts…” Romans 5:3-5 NIV

God is good, all the time!
Jill and Brad

Speed Bump

This post is #70 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

April 24, 2008

At this point in treatment, we could not have foreseen how much of a battle Hannah would have maintaining her platelet levels.  Low platelets caused ongoing issues for her the entire year she was sick.  But at the time, we had no reason to believe this was anything other than a little speed bump that would quickly be resolved.

My email from this date ten years ago ...

Hannah had another blood draw today to check her platelet level. Our favorite nurse was not there…so she had to be “stuck” twice and they were still not able to get a vein! They finally did a finger prick and got enough blood drop by drop to get a platelet count. We were a little bit disappointed to find that her counts had actually dropped slightly since Monday. It took so long to get Hannah’s blood that we were late to her radiation appointment by the time they got the results back, so we basically had to run out the door as soon as we heard them, and did not have an opportunity to talk to the doctor. Apparently, the doctor was not overly concerned by the drop, since she let us leave and did not feel it was necessary to come out and talk to us. We will go back on Monday for our regular weekly appointment. In the meantime, Hannah is off her chemotherapy drug, which I think she is enjoying.

We are so thankful for several things:

--Hannah has felt better today than she has all week...very little nausea this morning!

--She made it through both days of her geometry exam and feels that she did well.

--Tomorrow will be her last radiation treatment (at 6:30 a.m.!)

--She has been able to remain in school throughout her treatments.

--Although her hair has thinned a great deal, she still has her hair!

--God has provided His peace to Hannah and to all of our family throughout the last two months.

--We are thankful for all the friends, family, and even strangers who have been lifting us up in prayer.

--We are thankful that God is good, all the time!

The Juxtaposition of Sorrow and Joy

This post is #69 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.

We did not know before Hannah was born whether she was a boy or a girl.  We had an ultrasound done, but the doctor was unable to conclusively determine her gender from the grainy pictures .... This was well before the incredibly detailed ultrasounds available now!  So we had to choose both a boy's name and a girl's name.  We struggled to come up with a boy's name we both liked, but the girl's name was easy.  I had always loved the story of Hannah in the Bible and felt a kinship to her, as our daughter's conception did not come easily to us.  And the name Hannah, when paired with the middle name Joy, had such a beautiful ring to us.

Hannah loved her own name ... "Hannah" because it was a palindrome, and "Joy" because it was, well, joyful.  "Joy" has become my theme word since Hannah went to Heaven.  It reminds me of her, of course, but it also reminds me of the joy that is to come when I see her again one day.

Verses about joy abound in the Bible, and I've listed ten of my favorites below.   As you read them, I want to draw your attention to how many of these verses have the word "joy" juxtaposed with grief, tears, trials, affliction, etc.  Maybe I'm drawn to verses like that because of my own experience, and that's why these are my favorites.  Or maybe it's because that's how God so often seems to work ... allowing us to experience heartbreaking sorrow, but always following it up with a restoration of joy.

Maybe it's also because our capacity for joy expands based on the depth of our sorrow ... the greater the sorrow we've experienced in life, the greater our ability to experience true joy. And, of course, the joy we experience here on earth is nothing compared with the fullness of joy we will know when we are reunited with Him and our loved ones in Heaven someday.

1. "So also you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your JOY from you." John 16:22

2. "These things have I spoken to you, that my JOY may be in you, and that your JOY may be full." John 15:11

3. "He will yet fill your mouth with laughter and your lips with shouts of JOY." Job 8:21

4. "For His anger is but for a moment, and His favor is for a lifetime. Weeping may tarry for the night, but JOY comes in the morning." Psalm 30:5

5. "You turned my wailing into dancing; you removed my sackcloth and clothed me with JOY, that my heart may sing your praises and not be silent. O Lord my God, I will praise you forever." Psalm 30:11-12

6. "You make known to me the path of life; you fill me with JOY in your presence, with eternal pleasures at your right hand." Psalm 16:11

7. "Consider it pure JOY, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." James 1:2-3

8. "And provide for those who grieve in Zion--to bestow on them a crown of beauty instead of ashes, the oil of JOY instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of His splendor." Isaiah 61:3

9. "Shout for JOY, you heavens; rejoice you earth; burst into song, you mountains! For the Lord comforts His people and will have compassion on His afflicted ones." Isaiah 49:13

10. "Those who sow in tears shall reap with shouts of JOY!" Psalm 126:5

Tilted

This post is #68 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

April 22, 2008

We were into the final stretch of these radiation treatments at this point, and Hannah was really working hard to hang in there with her schoolwork.  It was so important to her to take this end-of-course geometry exam!  She told me when she got home that day that she felt like the floor and her desk were tilted, and she had to hold on tight to keep from sliding out of her chair the whole time she was taking this test.  It wasn't a complaint on her part ... just an observation.  Apparently that was a pretty common feeling for her at that time.  It was so hard to imagine how these treatments were affecting her brain ... but her attitude remained positive and she never complained.

Here's the email I sent that evening ...

“You hear, O Lord, the desire of the afflicted; you encourage them, and you listen to their cry.”—Psalm 10:17.

Just a quick update this evening…After a bit of a rocky start this morning, Hannah was able to go to school and take the first half of her end-of-course geometry exam. She felt good most of the day, and really believes she did well on the test. She will take the second half tomorrow. After receiving her radiation treatment this afternoon, she only has three more to go! Thank you so much for your prayers and encouragement…It means more to all of us than we can ever say!

Jill

Platelet Issues

This post is #67 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Photo credit: ZEISS Microscopy on Visual Hunt /CC BY-NC-ND

April 21, 2008

By this time, Hannah had been undergoing radiation treatments five days a week and taking an oral chemotherapy drug since mid-March.  These intensity of these ongoing treatments was finally beginning to take a toll, as you can see from the email update I sent on this date ten years ago ...

Today was our weekly blood work day in Little Rock. Once again, thankfully, they were able to draw her blood easily…we’ve found a good nurse, Melinda, who seems to know just how to find Hannah’s elusive veins. The doctor was still very pleased with how well Hannah is doing overall, but her platelet count had dropped pretty dramatically from where it was last week. So … she will not be able to take her Temodar (chemo drug) for the next seven days. They will draw blood again on Thursday to make sure that her platelet count is improving. 

The good news is that she will be able to continue her radiation treatments since she is so close to being finished (four more days!) There was a lot of discussion between the doctors as to whether she could continue the radiation, and we were relieved when they concluded that she could continue. She is really beginning to experience some of the side effects of the radiation treatments (fatigue, nausea, dizziness) and we really don’t want that to have to be prolonged. I think she’s actually a little bit relieved to have a break from the Temodar, though!

Here are some specific prayer requests:

· Fatigue and queasiness have kept Hannah home from school last Friday and today. This week (tomorrow and Wednesday) she has to take her end-of-course Geometry examination. This test is given over two days, for about 3 hours each day. Please pray that she will feel well enough to get through these next two days of testing, and that she will be able to concentrate and do her best on the test.

· Please pray that her platelet counts will improve, and that she’ll be able to continue the Temodar soon (she only has nine more doses that she has to take in this round of treatment).

· Please pray that the radiation and chemotherapy treatments are effectively destroying any possible cancer cells that could be remaining.

Ephesians 3:20-21a – “Now unto Him that is able to do exceedingly abundantly above all that we ask or think, according to the power that worketh in us, to Him be the glory…”

God IS good, all the time!
Jill and Brad