Cue the Scanxiety

This post is #124 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 31, 2008

Fifty-two radiation sessions completed.  Seven months of chemotherapy treatments in the rear view mirror.  Countless needle sticks.  Multiple bags of blood products on board.  A bald head and an extremely sore throat to show for it.  And one MRI scan which would reveal whether or not any of these treatments had had any effect against the tumors in Hannah's brain and spine.  And we have to wait through the weekend to get it done!  Cue the scanxiety!

My email from ten years ago today ...

Just a quick note....we just found out that Hannah's MRI is scheduled for this Monday (11/3) at 10:00 a.m. We should get the results the same day. Please join us in praying for a clean scan! Also, Hannah's throat/back of her mouth pain is the worst today that it's been since starting radiation...please pray for relief to come soon, now that the radiation is over. I hope to update again Monday evening, with the results of her MRI...thanks so much for your prayers!

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6

God is good, all the time!

Jill and Brad

A Word About Siblings ...

This post is #123 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 30, 2008

One difficult aspect of Hannah's cancer journey was how it affected Bethany.  You might remember that when Hannah was first diagnosed, she was in the middle of a prolonged battle against mono.  Once she finally recovered from that, she jumped back into all of her school, social, and church activities.

But no matter where she went, she was no longer Bethany ... she was "the girl whose sister has cancer."  We lived in a very small community, and her dad was the high school principal, so our story got a lot of attention.  As Brad and I became more and more involved in Hannah's healthcare, Bethany was forced to the fore.  At 13 years old, she became the face of our family in the community.  She was continually asked how her sister was doing by well-meaning people who were legitimately concerned about our family.  That question was hard enough for us as adults to answer ... and oh, so difficult for Bethany!  Hannah was also the recipient of many gifts, cards, messages, etc.  While Bethany never, ever appeared to begrudge her sister this attention, I'm sure there were times she felt left out.  Also, because I was Hannah's primary caregiver, I missed nearly all of Bethany's school activities and ball games during that year.

There were a number of wonderful people who took a special interest in Bethany during that year, and I am eternally grateful for them.  They made sure she felt loved and safe, and gave her attention when we were unable to.  These kindnesses continued after Hannah went to Heaven.  We were blessed that so many loved her so well.

Because of our experience, people often ask me how they can help a family with a child who has been diagnosed with cancer.  My response is to do whatever you can to assist with their other children.  If you bring a gift to the sick child, bring something for the other child/children as well.  Take that child or children out to eat, to a movie, to a ball game ... anything to help them experience some sense of normalcy.  Nothing helped me more during that year than knowing that Bethany was cared for and felt loved.

My email from ten years ago today ...

We were able to go to our local doctor's office today in Hot Springs for Hannah's blood work...and though her platelets are still low, she will not require an infusion since she's done with radiation! Her white count has also actually risen a little bit, and although it's still low enough that she has to be isolated, it's good to see improvement in that area! That means that tomorrow we will not have to make a trip to Little Rock, or any other doctor's office, for that matter. It will be wonderful for Hannah to have a full day at home to rest...actually, three full days counting the weekend. What a blessing!

Many of you have emailed asking about how Bethany, Hannah's 13-year-old sister, is coping with all that is going on. She's a very busy girl, with basketball, cheerleading, band, and church activities, and we've done our best to keep things as normal for her as possible, while still including her in an occasional trip to Little Rock so she can see for herself what all is going on with Hannah. She worries about her big sister, but she is learning (like we all are) to trust God one day at a time. She has an opportunity this weekend (thanks to a precious friend) to go on a 3-day, 2-night hiking trip in the Ouachita mountains, which will be a wonderful experience for her. Thank you to all of you for your concern and prayers for her, as well as for Hannah.

Jesus said, "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

God is good, all the time!

Brad and Jill

"No More Radiation"

This post is #122 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 29, 2008

Hannah's Facebook status from ten years ago today ... "Hannah is gonna give God the glory when all this is said and done ... no more radiation!"

The picture above was the calendar used by the technicians at CARTI to mark Hannah's radiation treatments in the month of October.  Adding stickers to calendar seemed a bit juvenile for someone Hannah's age, but boy, did we celebrate when she stuck that bumblebee on October 29th.  She completed similar calendars when she went through radiation the first time in the months of March and April.

When these calendars were combined and all the stickers were added together, they totaled 52.  52!  Who gets 52 radiation treatments to their brain?

We were so thrilled that Hannah had come through these 52 radiation treatments relatively unscathed.  The dreaded side effects outlined at the beginning of the process, for the most part, had not manifested themselves.  Yes, she was bald, her blood counts had taken a pretty good hit, and her throat was mighty sore, but overall, she seemed to be doing remarkably well.  We knew there were a number of negative long-term side effects of full brain radiation, but we brushed those concerns aside.  After all, what could we do about those?  The radiation had been necessary for Hannah's survival, and in about a week, an MRI would reveal how successful it had been.

My email from a decade ago ...

Well, it's official....Hannah has completed her second round of radiation treatments! We were told that she will have an MRI in about a week, and if it shows any remaining tumors, she may have to have some additional radiation, but it would be very targeted, and would just be about 5-10 sessions. Of course, we are praying for a clear MRI, with no sign of any remaining tumors! All together, she has undergone a total of 52 radiation treatments, and she would really like to be done with them for good! We are so thankful that she has come through all of this radiation without experiencing any of the really severe side effects which were described to us at the beginning.

Tomorrow, she will have blood work at our local doctor's office in Hot Springs--no trip to Little Rock needed. If her platelets are low, we will go back to Children's on Friday for an infusion, but that should be her last time to need platelets, since they should begin to rebound on their own soon.

"I will strengthen you, yes, I will help you. I will uphold you with my righteous right hand" (Isaiah 41:10).  This verse pretty much says it all...God has given us supernatural strength to get through these last five weeks. He has also used His people to bless us in so many ways...we are so thankful!

Brad and Jill

Isolated ... But Not Alone

This post is #121 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 28, 2008

Because of her very low immunity, Hannah's doctors ordered her to be isolated.  Other than trips to radiation and doctor's appointments, she had to stay home.  No school, no church, no going out to eat, no ball games.  At that point in her treatment, she wasn't really going out much anyway, so that wasn't too much of a problem.

Not only could she not go out, but no one could come in.  That meant no visits from friends or even extended family.  Even that didn't seem to bother her too much.  The ongoing radiation treatments were burning the delicate tissues of her throat, and that, combined with increasing fatigue, made her not really feel like visiting with people. 

Even without the immunity issues, her cancer served as an isolating factor from her friends -- her disease set her apart, made her "different" -- something no teenager wants to be. 

Hannah and I were together practically 24 hours a day ... but she was isolated from even me.  As hard as I tried, and as much as I wanted to, I could only peer in from the outside.  I could not carry her burden for her ... not even for a little while ... and I could not fully understand what she was going through.  I could not lie beside her in an MRI tube, take a radiation treatment, swallow her chemotherapy pills, carry the weight of her fatigue, or feel the pain in her throat.  I did not know what it felt like to have my hair come loose in my hands.

This was a journey she had to make alone.

But she wasn't alone ... not really.  God was with her every step of the way.  He had redeemed her and called her by name.  There's no other explanation for how she could have accepted everything that happened to her with such grace and peace.  I'm so thankful that even though she was isolated, she was never truly alone.

Isolation

This post is #120 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 27, 2008

Hannah's facebook status ten years ago today:  "Hannah is frusturated that my immune system is so low that I can't go anywhere besides the hospital ... but only 2 radiations to go so it should get better soon!"

I love how Hannah acknowledges her "frusturation" in this status, yet comes back to the positive side ... reminding her readers that things should get better soon.  She kept that attitude throughout her year-long cancer battle, even as the extensive radiation treatments were beginning to take a greater and greater physical toll on her. 

My email from a decade ago today ...

We took Hannah to Children's Hospital for routine blood work and to meet with her oncologist today. Her blood work showed that her platelets are too low again, so we will be returning tomorrow for another platelet transfusion. Also, her white blood cell count has dropped low enough for her to have to be isolated at home. This is not really too much of a problem since she is not in school right now, but it does mean that she can no longer have visitors or go out to eat, to church, etc. This isolation period should not last too long, though, since she only has two more radiation treatments to go. Once the radiation is complete, her counts should begin to recover fairly quickly.

Our oncologist told us today that we will be having an MRI soon (we should find out the date tomorrow) to determine the effectiveness of the radiation treatments. After that, he wants to start the chemotherapy treatments as soon as her blood counts are high enough to allow it. We had originally understood that Hannah would have a 4-week break from treatments after radiation, but he told us today that he hopes to start chemo in one to two weeks. We should have a little bit better idea of the actual schedule tomorrow.

Hannah continues to feel fairly well, although she has a constant sore throat and a dry cough from the radiation. Fatigue is also an issue, both due to the radiation, and due to difficulty sleeping at night from the sore throat and cough. However, she remains positive and upbeat and her faith is strong! It's nice to know that after she finishes radiation on Wednesday, she can look forward to gradually feeling better. We are all really learning the concept of taking one day at a time!

Your continuous encouragement and support has really carried us through...thank you for keeping us reminded that God is good, all the time!

Jill and Brad

No Need to Hurry

This post is #119 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 24, 2008

One frustrating thing about Hannah's care is that we rarely had the opportunity to talk privately with her healthcare providers.  Hannah was always present, listening attentively, while her doctors and nurses talked with us about her most recent scans, blood work results, treatment plans, etc.  I always wondered how honest they were really being when Hannah was sitting right there with us soaking it all in.

When Hannah was taken back to have her PICC line inserted, I had a rare few minutes alone with her primary care nurse.  The nurse spent part of that time reviewing the at-home care that the PICC line was going to entail, then asked if I had any questions.  I did have a question ... a burning question ... but I wasn't sure I could pull myself together well enough to ask it.

You might recall that Hannah had been offered the opportunity to have a Make-a-Wish granted.  Her wish was to go to the Caribbean ... specifically the Atlantis Resort in the Bahamas.  But she was adamant that she didn't want to go until her treatments were complete and her hair had grown back.  I mean, what teenage girl wants to go to a fancy beach resort with a bald head?

My question was whether we needed to disregard her wishes to wait and go on this trip now.  I left the words "while we still can" unspoken, hoping they would be understood.  What I really wanted to know, but could not speak because of the emotion strangling my vocal cords, was whether Hannah might die before we had a chance to fulfill her wish.

So I stammered out my question about whether we should expedite our trip ... and the nurse assured me there was no hurry.  "Really?" I choked out ... "No, no need to hurry," was the reply.

OK ... so we would wait until Hannah was completely well to go ... or at least until her hair grew back.

We never did that Make-A-Wish trip because Hannah never did not get well enough to go, nor did her hair ever grow back.  Over the years I've wondered why the nurse responded in that way, because I do believe that with the breadth of experience she had, she knew. 

I have some theories ...

Maybe she didn't understand my underlying question.  After all, I did not actually ask what I really wanted to know.

Maybe she knew that there was no way we could be away from hospital for any length of time due to Hannah's constant need for platelets, so she knew that making the trip at that time was not even a consideration.

Maybe she knew that it was already too late for us to make the trip.

I have no hard feelings whatsoever toward that nurse ... She took wonderful care of our whole family the entire year we were at Children's.  I really believe she was trying to spare us some pain by answering that question the way she did ... allowing us the luxury of feeling, at least temporarily, that we had more time with Hannah.

My email from a decade ago ...

Just a quick update...Hannah had her PICC line inserted this morning at Children's Hospital this morning. It was a simple procedure which required only a local anesthetic (not sedation, as we had originally been told) and was even easier than getting a regular IV put in, according to Hannah. It will require some daily maintenance...we were given a box full of medical supplies, and a nurse taught us how to flush the line every day. I think Hannah will really enjoy not having to be "stuck" when we return for blood work again on Monday! After the PICC line was put in, we went for her radiation session ... only three more to go! Now we're looking forward to a relaxing treatment-free weekend at home!

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

God is good, all the time!
Jill and Brad

No More Needle Sticks

This post is #118 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 23, 2008

Hannah's Facebook status ten years ago today: "Hannah had to get another platelet transfusion today ... Glad that's over!"

By this point in her treatment, Hannah had  endured hundreds of "sticks" ... often two or three in one visit because it was so hard to find a good vein on her.  She was such a pro at it, she would often calmly coach the nurses on just which vein to use or how to hold the needle just right in order to have a successful blood draw.

With all the platelet infusions she was needing and the IV-administered chemotherapy drug she would soon be receiving, it was finally time to give her some relief from all the needle sticks.  The decision was made to insert a PICC line instead of a port ... I believe because poor wound healing was a side effect of the chemo she would be receiving, and insertion of a PICC line would be a less invasive procedure.

While we were glad Hannah would no longer have to endure the innumerable needle sticks, this step was yet another reminder of just how serious her illness really was.

My email from ten years ago today ...

Just a quick update tonight...we went to Children's Hospital today for blood work, and Hannah's platelet count was low again. So, while they waited for the platelets to arrive from the blood bank, we ran over to CARTI for Hannah's radiation treatment, then headed back to Children's for her infusion. The infusion was uneventful, and by about 3:00, we were headed for home. Her blood work also showed that her white cell count has also continued to drop, and she is very close to the point where they will order her to be in isolation (no going to school, Walmart, church, etc). This is not really too much of a problem...since pretty much the only places she goes right now are to Children's and to CARTI. 

Tomorrow morning we will return to Children's for the insertion of a PICC line--a Peripherally Inserted Central Catheter. Once this is inserted, they'll be able to do all of the blood draws, transfusions, and chemotherapy treatments through that line, and she will no longer have to be stuck every time! This will be a real blessing, because her arms and hands are covered with bruises from all of the blood work and infusions she's had to have in the last couple of weeks.

Yesterday was Hannah's 17th birthday...and she received dozens of emails, text messages, Facebook messages, phone calls, cards, etc. She even had a surprise visit from a group of her school friends yesterday evening, who brought her a digital camera and all the accessories. The kids at school had secretly been collecting money for a couple of weeks, and it was a wonderful surprise when they came over last night. We have been blessed with so many wonderful friends....We can never thank all of you enough for the kindnesses you've shown to our family! Thank you so much for making her birthday special!

"Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness." Lamentations 3:22-23

God is good, all the time!
Brad and Jill

Hannah's 17th Birthday - Ten Years Later

This post is #117 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 22, 2008

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

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

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

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

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

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

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

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

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

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

Sigh.

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

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

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

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

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

"Annoying" Platelet Issues

This post is #116 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 20, 2008

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

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

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

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

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

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

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

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

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

Brad and Jill

Of Razors and Wigs

This post is #115 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 19, 2008

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

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

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

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

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

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

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

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

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

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

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

An Early Birthday Soiree'

This post is #114 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 18, 2008

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

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

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

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

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

Mother/Daughter Spa Day

This post is #113 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 16, 2008

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

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

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

My email from ten years ago today ...

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

Jill and Brad

Family Photo Shoot

This post is #112 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 13, 2008

 

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

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

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

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

My email from ten years ago today ...

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

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

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

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

Jill and Brad

"Having Better Days"

This post is #111 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 9, 2008

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

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

My email from ten years ago today ...

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

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

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

Brad and Jill

Somewhere On the Highway In Between

This post is #110 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 6, 2008

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

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

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

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

Jill and Brad

Homecoming 2008

This post is #109 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 3, 2008

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

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

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

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

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

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

And my email ...

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

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

Jill and Brad

"It's Only Hair"

This post is #108 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

October 2, 2008

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

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

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

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

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

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

Jill and Brad