Thursday, February 28, 2019

Snow Showers and Sweet Hugs

This post is #189 in a series ... Through this series of posts I plan to share our family's experiences during and following 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 period 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.

February 28, 2009

As I've been looking back through all the emails passing back and forth between the newspaper, our friends and family, the church staff, etc., that went on in those days immediately following Hannah's homegoing, I'm struck by how "together" I appeared to be.  My communication skills were intact and I was generally coherent, but I remember none of it.

When I think about it now, I realize that I was actually moving in slow motion through a thick, soup-like fog, while other wonderful people were scurrying all around me, getting things done that needed to be done.  There were people bringing us food, people organizing the food, people writing down who was bringing the food, people putting the slideshow and music together, people preparing to sing at the celebration service, people preparing a beautiful display of pictures and mementos, and people making arrangements for the locations of the visitation and celebration service.  I know I never thanked all these people adequately ... I hope they could somehow sense my appreciation for the gifts of service they gave our family.  They loved us well and it lifted such a burden from our shoulders.

Our home church was undergoing a major renovation at the time, rendering the sanctuary unusable for the visitation and funeral.  It was decided (I don't remember who decided) that the visitation would be held in the youth building of our church.  The pastor of another local church was contacted (I don't know by whom) and he graciously agreed to allow us to use their sanctuary for the celebration service.

As we prepared to attend the visitation later that day, we received a call from the funeral home that Hannah's body was ready if we wanted to come by and view it privately as a family.  Honestly, I didn't want to.  I had kissed her cold cheek goodbye at the hospice center and neither Brad nor I felt the need to see her again.  Bethany did, though, so we went to the funeral home.

The funeral home was owned by a good friend of ours.  Her daughter and Bethany had played basketball together for several years.  She had been so kind to us through the process of making the arrangements, and it was such a comfort to me to know that Hannah's body had been gently cared for by someone who knew her and who loved our family.  Bethany went in to see Hannah, accompanied by her friend.  After a few minutes she came out, took us by the hands, and led us in so we could see her too.

As jarring as it is to see your child in a casket, there was a comfort there, too.  Bethany had chosen her outfit the night before from her closet, and it was one of her favorites.  She looked rested and peaceful, and for that I was thankful. 

We decided not to have her body at the visitation that evening.  Since the casket would be closed, there was really no point in transporting it there, only to move it to another location for the funeral.

We arrived about an hour before the visitation was scheduled to start, and the first person I saw when we walked in was my college roommate.  We had been maids of honor in each other's weddings, but had not seen each other in years.  She and her husband had driven all the way from the San Antonio area that day for the visitation, and after we hugged and talked for awhile, they left and drove all the way home.  I was blown away by the extravagant gift of their presence.

It was a good thing we arrived early, because people began to arrive shortly after we did, and they continued to arrive well after the scheduled two-hour visitation time elapsed.  We were buoyed by the love and kind words of friends, family, medical providers, and strangers all evening long.  Someone brought us stools at some point because we'd been standing so long, but we just couldn't stay seated.  The line of people went out the door and around the corner of the building.

It was a bitterly cold evening and while all those people were standing outside waiting to get in, a light snow began to fall, something quite unusual at the end of February in Arkansas!  Several precious people whispered to me that evening that Hannah must have sent the snow from Heaven just for us.  And I had to smile to myself, because unlike most kids, Hannah hated snow.  Oh, she liked it when she was little ... we have great memories of sledding (or trying to sled) on our neighborhood streets in El Dorado, making snow angels, having snowball fights, etc. And she liked getting out of school because of snow.  But as she'd gotten older, she liked snow less and less. She just really didn't like cold weather, especially after she got sick.  So all the snow comments added a bit of private levity to the evening.

By the time we headed home that evening, we were exhausted but warmed by the love of all these precious people who had come to bring us comfort and share remembrances of our precious girl.  Most of them had no idea what to say to us, but that was okay.  Their presence and their sweet hugs communicated all we needed to know.

These were difficult days, but the prayers of God's people were giving us strength for every moment.  We could literally feel them carrying us.  If you were one of those who was praying for us during that time ... Thank you. 

Wednesday, February 27, 2019

From Anger to Peace

This post is #188 in a series ... Through this series of posts I plan to share our family's experiences during and following 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 period 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.

Before I begin today's post, I want to take a moment and express my gratitude to all of you who have been following my posts as I've re-lived the final year of Hannah's life through writing.  You have encouraged me and blessed me beyond measure with your comments and kind words.  When I embarked on this year of writing, my intention was honestly quite self-serving.  Writing is how I best process my thoughts, and I thought it would be helpful for me personally to think back through the events of that year through the lens of a decade.  I had no idea there would still be so much interest in Hannah's story after ten years, and it's been a bit overwhelming, yet humbly gratifying, to see how God continues to use her life to touch others.  Thank you for encouraging me and allowing me to continue to share. 

February 27, 2009

Most families don't have the opportunity to prepare for their child's death the way we did.  We had known for a year that Hannah's cancer could be fatal, and even though we prayed earnestly for earthly healing, we knew from the beginning that God may choose to heal her in Heaven.  And, of course, we eventually reached the point where we knew her death was a certainty unless He dramatically intervened. 

So in the final days of her life, we frequently discussed what her actual passing might be like.  We'd been assured that it would be peaceful ending when the tumors on her brainstorm caused her to simply cease breathing, and that's how we imagined it.  It would be a beautiful moment as we sang hymns around her bed, maybe even getting a glimpse of a smile on her face as she got her first peek into Heaven. 

As you know from my post yesterday, this was not the case.  Hannah's last hours on this earth were not peaceful or beautiful.  I don't believe that Hannah was conscious of anything for the last several hours of her life and I an convinced that she did not suffer.  In fact, her soul may have already been in Heaven as her body struggled.  But those final moments were excruciatingly difficult for us.

When I went to bed that night, for the first time since Hannah's diagnosis I found myself angry at God.  Really God?  After all she had been through, as faithful as she had been, as much as she had suffered, why did it have to be so ugly at the end?  How could He have let this happen?  If anyone deserved the beautiful homegoing with a cappella hymns and peaceful smiles, surely it was Hannah!

I angrily complained to God into the wee hours of the morning.  Once I'd had my say, He very quietly reminded me: "My Son did not have an peaceful, beautiful death either." 

The moment those words entered my mind, my arguments and complaints were abruptly silenced and I could physically feel His peace wash over me.  In the calm that followed, I was finally able to sleep.

The next morning, the three of us headed to the funeral home to make arrangements.  Choosing a casket just about did me in.  Walking into that hushed, dimly-lit room with caskets displayed like new cars on a showroom floor was one of the most unnatural things I'd ever experienced.  That is a decision no parent should ever have to do for their child.  But it must be done, and we did it, choosing a beautiful but simple oak container for our daughter's body. 

We already knew the casket would remain closed for both the visitation and the funeral.  Hannah had attended a funeral with us not long before she was diagnosed and it concluded with the attendees filing past the open casket and looking down at the dearly departed loved one.  We had barely gotten out of the funeral home when she declared, "I wouldn't ever want people to walk by and look at me like that when I'm dead!"  She was quite adamant about that, and knowing her personality like we did, we knew she meant it.  Knowing this about her, and aware of the fact that she looked nothing like most people remembered her, there was never any question.  The casket would be closed.

My email from ten years ago ...

A visitation has been scheduled for Saturday, February 28, from 6:00-8:00 p.m. at Hot Springs Baptist Church. A celebration service will be held on Sunday, March 1, at 2:00 p.m. at First Baptist Church in Hot Springs. A private family burial will be held on Monday, March 2.

"Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands." 2 Corinthians 5:1

We are so thankful for the seventeen years we had with Hannah here on this earth, and are looking forward to our reunion with her in Heaven. God is good, all the time!

Jill, Brad, and Bethany

Tuesday, February 26, 2019

Safely Home

This post is #187 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.

February 26, 2009 

I woke with a start ten years ago today.  I had slept for several hours without interruption, which had not happened in a long time.  It scared me, and I immediately jumped up to check on Hannah.  She had slept all night, and was still sleeping.  She looked different somehow; better, in fact.  She was sleeping in a more naturally relaxed position and her color seemed to be improved.  Brad came into the room about that time (he and Bethany were staying in a room right next door) and he also thought she seemed better.

She seemed so much improved, in fact, that he decided to go for a run that morning.  Neither of us had been outside the walls of the hospice center much since we'd arrived eight days ago, and a little fresh air would definitely do him some good.  I decided I'd better fill out that TEFRA renewal paperwork ... The way things looked this morning, we just might need that insurance coverage in March.

I filled out all sixteen pages of paperwork, wrote the premium check, and prepared it for mailing.  I even carried it down the hallway and put it in the outgoing mail tray on the front desk.  Upon returning to the room, I peeked at Hannah, who was still sleeping peacefully, and began straightening up a little bit.  Brad had returned from his run by this time and was taking a shower.

As I moved around the room, I became aware that the sound of Hannah's breathing had ever so slightly changed.  It was beginning to take on a ragged quality.  I called Brad in and we sat down beside her.  It was apparent that breathing was beginning to require more effort from her.  As her breathing became more and more labored, I sent off this quick email ...

Hannah has taken a big step toward Heaven this morning….we believe she will be there by the day’s end. Thank you for all your prayers which are carrying her Home and keeping us in His peace….

“Then I saw a new Heaven and a new Earth, for the old Heaven and the old Earth had disappeared…I heard a loud shout from the throne, saying, “Look, the home of God is now among His people! He will live with them, and they will be His people. God Himself will be with them. He will remove all of their sorrows, and there will be no more death or sorrow or pain. For the old world and its evils are gone forever.”…No longer will anything be cursed. For the throne of God and of the Lamb will be there, and His servants will worship Him.” Revelation 21:1, 3-4; 22:3.

God is good, all the time!

Jill, Brad, and Bethany

I'm not going to share the details of what happened over the next few hours.  That is a sacred time shared only between Hannah, Bethany, Brad and myself.  I will say only that her oncologist's prediction that her Homegoing would be a peaceful cessation of breathing was not accurate.  The very thing we had dreaded -- what we had worked so hard to prevent with all those platelet infusions -- is what ultimately took her Home.  It was ugly and brutal.

When her life on this earth ended, my first emotion was extreme relief mixed with joy.  I remember Brad and I both raising our hands in a sort of awkward cheer when she took her final breath.  Her suffering was ended at last, and all of Heaven was now spread out before her eyes!  How could we not rejoice on her behalf?  She was safely Home.

At some point, Brad stepped out of the room and alerted the hospice staff that Hannah had gone Home.  The doctor came in and briefly examined her.  I remember having the crazy thought that maybe, just maybe, he was going to tell us that she hadn't really died, but no ... he pronounced her dead as of 2:25 p.m.  Then we were asked to leave the room so they could clean her up and prepare her body for transport.

We left her room and fell into the arms of our extended family members, who were waiting anxiously in the sun room area.  The relieved/rejoicing feeling was seeping away, and reality was beginning to sink in.  That sun room was a tangle of tears and hugs and love and prayers, and we drank it in.

At 2:50 p.m. I sent this email ...

Hannah entered Heaven at 2:25 p.m. and is eternally healed....We are praising God!
We will be returning home this evening...please give us some time to be together as a family...

God is still good, all the time!

Jill, Brad, and Bethany

We were called back to Hannah's room when the hospice staff was finished with her.  I was surprised to see that her body was tightly wrapped like a mummy.  What struck me the most, though, was the look of utter peace on her face.  She looked more like herself than she had in months ... the look of sickness we had become so accustomed to was gone.  There was no tension and no pain reflected in her face.  She was stunningly beautiful ... but she was clearly gone.  Her shell was empty, and that made it easier to walk out the door that day.

We arrived home about an hour later to a hot meal sitting on our kitchen counter.  The three of us were surprisingly hungry.  I remember reaching up into the cabinet and pulling out four plates just like I always had ... and feeling my heart shatter as I sadly put one back.

I don't remember much about that evening.  We were so thankful that people respected our desire to have that time just for the three of us.  I know we sat in Hannah's room for awhile and reminisced.  I also remember that we threw her wig in the trash ... in fact, we buried it at the bottom of the trash can.  It seemed to represent everything that had been so painful about the last year's journey.  We didn't even want to see it!  Hannah hated that wig, and so did we.

As we clung to each other that night, we knew only a few things for sure.  We did not like this, but  God was still good, He would not abandon us in our grief, Hannah was with Him, and we would see her again one day. 

For the time being, that was enough. 

(My original intention was to conclude this year-long series of posts with Hannah's homegoing, but I have so much more to share.  I hope you'll indulge me with a few more posts in the coming days.)

Monday, February 25, 2019

Breathing Peacefully

This post is #186 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.

February 25, 2009

The entire time we were at the hospice center had a distinct air of unreality.  The fact that we had reached the point where we were re-living the anniversaries of the events which had brought us to this place just added to that sense of illusion.  Surely this wasn't happening to our family.  Surely this was all some kind of crazy dream.  Surely Hannah was going to be fine. 

But no ... there we were, in a hospice center with our 17-year-old daughter whose grasp on this life was becoming more tenuous. 

And no matter how surreal the situation was, there were still practical matters which needed to be taken care of.  We were nearing the end of Hannah's TEFRA coverage.  It would expire on February 28th, and if we didn't renew it, we would be without this supplemental insurance program.  The application was 16 pages long and required a premium check of $333.00 for a 3-month extension. 

Should we renew it or not?  The doctors couldn't tell us how long Hannah would be with us ... probably just days at this point, but maybe longer.  Yes, she might live on into the month of March, but maybe not.  I really didn't want to take the time and energy away from Hannah to fill out that pile of paperwork if I didn't have to.  Yet I desperately wanted her to still need it!  We decided to give it another day or two to see how things went. 

Another practical matter to tend to -- Hannah had worn a small diamond ring on the third finger of her left hand for a few years now.  This ring was a special gift from her dad, given to her on her 13th birthday when he took her out on a date and talked with her about boys and purity and her future husband.  She loved that ring and was still wearing it, though her fingers had become so thin I was afraid it would slip off and get lost in the sheets of her hospice bed.  I gently removed it and placed it on the third finger of my right hand, where it remains to this day.  She wouldn't be needing it anymore.

As the day wore on, Hannah's comfort became more of an issue.  She was no longer able to communicate verbally, but pointed with her index finger when she wanted the head of her bed raised or lowered; or at least we thought that's what she was trying to tell us.  Up and down, up and down all afternoon ... nothing seemed to bring her relief.  Finally we identified what was causing her to be so uncomfortable and the doctor came in, performed a simple procedure, and at last she was able to relax.

What a relief to see her slip into a sound sleep that evening after such a restless day!  We were still hearing the echoes of what her oncologist had told us a week previously, that due to the location of the tumors on her brainstem she would simply and peacefully just stop breathing when God called her home.  Because of that, we always seemed to be anxiously watching her breathe ... not knowing when that last breath would come. 

But that night, she breathed deeply and peacefully as she slept and it was a gift to my weary soul.   

My email from ten years ago today ...

Today marks the one year anniversary of Hannah's brain surgery.  It's been very surreal to relive these dates in February in this current situation. She's had another rather restless day, but they have now put her on a morphine pump, so she can have a steady flow of pain relief rather than having to wait for the nurse to come with the injection each time. We are hopeful that this will really make a difference for her.

We want to thank everyone for the many, many emails, calls, cards, gifts, meals, etc. We spend a lot of our time reading our email and snail mail (much of it from people we don't even know!) and we are saving every single one...even though we are unable to respond to most of them due to sheer volume. What a blessing you have been to our family!

God is good all the time!

Brad, Jill, and Bethany

Sunday, February 24, 2019

Making Preparations

This post is #185 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.

February 24, 2009

It's a very surreal thing to write an obituary for your own child.

It's even more surreal when your child is sitting beside you as you write it.

After Hannah's doctor confirmed that there was nothing else medically that could be done for her and that unless God intervened in a miraculous way she would be going to Heaven soon, I decided to begin making preparations for her funeral.  If you know me you know I'm a planner by nature, so this was not unusual although the situation certainly was.  I was afraid that once Hannah left for Heaven I would be too distraught to think clearly enough to plan something so important.

I began the process while we were still at home, before we entered hospice care.  I wrote her obituary sitting on the couch in our living room with Hannah dozing beside me in her recliner.  I also gathered our favorite family photos for my brother to use in creating a slideshow tribute to Hannah's life.  Together, Brad and I discussed who would speak at her "celebration service", what music would be sung, and where her earthly shell would be buried.

Some might consider this a lack of faith.  After all, that miraculous intervention from God was still possible!

Here's how I looked at it ... if God did choose to heal Hannah at this point, what an amazing part of her testimony this would be!  Think of how incredible it would have been for her to stand before crowds of people and share how her death was so near that her mother had already written her obituary when God touched her and restored her to health!

Nothing would have made me happier than for all those funeral preparations to have been a waste of time.

As impressive as that testimony would have been, that was clearly not God's plan for her life.  His greatest glory was to be revealed in her death.  Of course, we could not know that at the time.  Our job was simply to trust that the One who loved her even more than we did had her (and us) in His mighty right hand.

My email from ten years ago today ...

There's not a lot of new information to report today ... Hannah has not eaten at all, and has drank just a couple of sips of water. She is getting morphine injections into her PICC line every 2-3 hours to keep her comfortable. She also got another unit of platelets today, although she has not had any nosebleeds for the past three days (Praise the Lord!). She is communicating now primarily through hand signals and head movements. She has indicated to us that she is ready to go to Heaven, and we have turned her over to the Lord. We are praying specifically for God's mercy ... either mercy in the form of physical healing, or mercy in taking her to her eternal rest soon.

"Behold, the eye of the Lord is on those who fear Him, On those who hope in His mercy, To deliver their soul from death, And to keep them alive in famine. Our soul waits for the Lord; He is our help and our shield. For our heart shall rejoice in Him, Because we have trusted in His holy name. Let Your mercy, O Lord, be upon us, Just as we hope in You." (Ps 33.18-22)

God is good, all the time!

Jill and Brad

And a few pictures from that slide show I prepared ...

Saturday, February 23, 2019

We Choose #3

This post is #184 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: Natalia Romay Photography on VisualHunt / CC BY-NC-ND

February 23, 2009

We still choose #3, and a decade of time has proven this to be the right choice.  My email from ten years ago today explains ...

Today's email will be less of a Hannah update than a summary of what's been on our hearts lately. Hannah continues to slip closer to Heaven....she is now pretty much sleeping around the clock, with very brief periods of wakefulness when she tries to communicate. She did not eat at all today, but was able to drink a little bit of water this evening. We have difficulty understanding what she is saying to us, but she seems to understand everything that is said to her. She is also beginning to experience some pain, but we've been able to keep it well under control with morphine. We continue to pray for her earthly healing, while knowing that Jesus is ready to receive her in Heaven.

We were initially hesitant to share the story about Hannah praying for a storm in her life because we didn't want anyone to misunderstand the situation. We certainly didn't want to give anyone the impression that God would intentionally and maliciously inflict brain cancer on a 16-year-old girl just because she prayed for a storm. We believe that God has a specific plan for everyone, and that He knows what every day of our life holds before we are born. In His sovereignty, He knew that Hannah would one day battle brain cancer, and we believe that He was preparing her for this two years ago when she was at the Disciple Now event. 

For her, and for us, that prayer for a storm has been a source of comfort and an answer to the question "Why?" Every email we receive, phone call we answer, and person we talk to who tells us that their life has been changed because of Hannah is the answer to that question.

I recently read a book by Steven James titled Sailing Between the Stars: Musings on the Mysteries of Faith and in one chapter he deals with the question of why a good God would allow people to suffer in this world. I'd like to quote him here:

"I am left with three choices: 

1) I can give up on God and tell my heart that he doesn't exist, that he couldn't possibly exist, that life really is as senseless, random, and pointless as it so often appears. 

2) I can believe that God does exist but is either too impotent (powerless) to stop the suffering, unaware of the suffering (foolish), unconcerned about those who suffer (apathetic), or just plain out to get me (malevolent). None of these kinds of Gods would be worthy of my worship or my life. 

3) I can cling to the belief that God really is in control, and really does love me, and really does work good out of both the joys and the hardships, the rights and wrongs of the world. I can keep leaning on the invisible arm that has supported me in the past and trust that the one who can shape a star on the tip of his tongue can also shape blessings out of my pain."

Hannah has chosen #3, and so do we. God is good, all the time!

Jill, Brad, and Bethany

Friday, February 22, 2019

Surprise Phone Calls

This post is #183 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.

February 22, 2009

There's really not much I can add to my email from ten years ago today.  Here's my description of the events that took place on this very special day ...

Hannah seems to have moved a little bit closer to Heaven today. She has slept all day today, and just ate a few bites of cereal about 8:00 tonight and drank just a little bit of water. She has spoken very little, and it is becoming more and more difficult to understand what she is saying. She may be starting to get her days and nights mixed up a little bit, as she was awake quite a bit during the night, but has slept all day.

We did have an exciting afternoon, as Hannah received not one, but two, surprise phone calls. The first call came from Mark Hall, the lead singer of Casting Crowns, the group that sings the song "Praise You in the Storm". He received word of Hannah's story and her prayer for a storm from church members in Atlanta. He encouraged us all and commented about how her testimony was already touching lives and he believes there will be more lives touched in the future. We were able to let him know how much that song has meant to us and how God has touched our lives through their music.

The second call was from the winner of American Idol two years ago, Jordin Sparks. Some wonderful friends (who we have actually never met) arranged for this to happen because they have been following Hannah's story through these emails and knew she was a big fan of American Idol. Although Hannah was unable to talk to Jordin, it was clear that she was able to hear her and understood what was being said. Jordin was wonderfully gracious and even sang a little of Hannah's favorite song, "No Air."  Brad shared with Jordin that Hannah always noticed Jordin's witness for Christ and her stand for purity. It was truly a blessing and a memory we will always treasure.

God clearly orchestrated the circumstances surrounding these two calls, and we are grateful. He is good, all the time!

Jill and Brad

"Soon you will read in the newspaper that I am dead. Don't believe it for a moment. I will be more alive than ever before."--D. L. Moody

Thursday, February 21, 2019

Special Visitors

This post is #182 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: Leo Reynolds on Visual Hunt / CC BY-NC-SA
February 21, 2009

Many people came to visit us when we were in the hospice center, but only a few actually got to see Hannah during that time. She was never one to like a lot of attention even before she got sick, and I knew she would not be comfortable with visitors, especially in her condition.  We wanted to protect her dignity as much as possible; therefore, only the people we knew she would really want to see were allowed in. 

Three of her best friends from her elementary school years were included in that group.  What courage it must have taken for these young ladies to come see their formerly vibrant friend who was now in the final days of her life!  I'm not sure I could have done it at their age.  But these girls screwed up their courage, put smiles on their faces, and came.  I'm so grateful for the gift of their presence that day.  They were on their way to a youth retreat weekend, and as they were leaving, Hannah said, "Y'all have fun." A sweet surprise to those of us who rarely heard her speak in those days.

There were other visitors whose lives were changed eternally by their visit with Hannah in those final days ... My email from a decade ago explains.

We've had a very busy day full of visits and company today. Hannah has sat up, eaten, and talked some today, but has really not rested very well. This evening we asked the nurse to give her something to help her relax, which she did about 30 minutes ago, and now she is sleeping soundly. The best news of the day is that we were able to share Hannah's story and the peace that He's given us all with three members of our extended family who have now made decisions for Christ. Please pray that they will follow God's leadership in their lives and grow in their faith. This is yet another answer to Hannah's prayer. To God be the glory! He is good, all the time!

The surprise phone call I mentioned yesterday has not yet taken place, but we are still expecting it some time over the weekend .... we'll let you know the details later.

Jill and Brad

Wednesday, February 20, 2019

Spudnuts by the Dozen

This post is #181 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.

February 20, 2009

You may recall that on Hannah's last day at Children's Hospital before we moved to hospice, some dear friends brought us a box of Krispy Kreme doughnuts. Hannah ate a couple bites of one, but let us know with her limited communication skills that it wasn't as good as a spudnut.  Now, if you're wondering what in the world a "spudnut" is, let me fill you in. In El Dorado, Arkansas, there is a little hole in the wall called the Spudnut Shoppe, where they make the most delicious doughnuts in the world. I am told that they are made with potato flour ... thus the name. If you are willing to stand in a long line outside the Spudnut Shoppe, you can experience the extraordinarily sweet sensation of a hot spudnut melting in your mouth. We lived in El Dorado for several years, and on many Saturday mornings the girls and I would hungrily await Brad's arrival home with several hot spotnuts in a grease-stained little white bag. 

Anyway, in my email update that evening, I mentioned Hannah's comment, mostly for the benefit of all our friends from El Dorado who share our love for the spudnut. The very next day, not long after we arrived at the hospice center, a man showed up at there with four dozen spudnuts!  This gentleman wasn't even from El Dorado, and we had never even actually met him before.  He was from Fort Smith, and had driven from there to El Dorado and then to Little Rock to bring Hannah these spudnuts in response to that email.  And that's not all ... over the next few days, we received three dozen more spudnuts ... one box even arriving in the mail. I think every nurse at the hospice center, every visitor, and every family member got to sample a spudnut at some point during the eight days we were there. We had a lot of fun with those spudnuts, and were completely blown away by people's kindness in providing them for our family.

Hannah was still having some bleeding episodes off and on, even with the regular platelet infusions she was receiving.  We spent some time visiting with the doctor privately that day and he explained that because Hannah had received so many platelets from so many different donors since October, her body had probably built up an immunity to them and wasn't even processing them anymore.  This was sobering news, of course, but he agreed to continue the platelet infusions and added in some Vitamin K shots in hopes that would help with clotting.

My email from ten years ago today ...

Today marks one year since the day we found out that Hannah had a brain tumor. In some ways, it seems like far less than a year, and in some ways it seems like much, much longer. While it's been an incredibly difficult year, it has been a year full of blessings too. It was also one year ago today that we bowed down together as a family and determined that we would trust God in this situation and that we would give Him the glory no matter what the outcome. Our faith in God and our bond as a family have been strengthened throughout this year.

Hannah has had another pretty good day. She was wakeful and restless through much of the night and day, but has rested a little bit better this evening. She continues to be pain-free. She has had three nosebleeds today, and the doctor is concerned that she may have built up an immunity to the platelets because she has received so many in the past few months. We will continue with the platelet transfusions every other day, but he is not sure how effective they will be. They can also do Vitamin K shots, which should help somewhat with clotting.

We have had lots of visitors over the last few days...and would you believe...we've received seven boxes of spudnuts from El Dorado! We've had a lot of fun with that. We've got all of the staff here hooked on spudnuts now! We will be welcoming visitors for one more day...tomorrow...and after that, please call and check with us before you come. Hannah is really not strong enough to enjoy visitors. It has been so wonderful to see everyone, but we also feel it is important for Brad and I to really be able to focus on our girls during this time. We appreciate your understanding in this area.

Again, thank you for the emails, the cards, the gifts, the meals, the offers of help, and most of all, your prayers during this time. We have heard that Hannah is going to receive a very special surprise phone call tomorrow...we will share the details of that with you after it happens.

God is good, all the time!

Jill and Brad

Tuesday, February 19, 2019

"Either Way, Hannah Wins"

This post is #180 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.

February 19, 2009

I'm not gonna lie ... When we got to the hospice center and found out there was no wifi, I may have freaked out just a little. The emails and messages we received daily from so many wonderful people had become such a part of our lifeline it was hard to imagine being cut off from them.  And writing my daily emails was actually playing a role in keeping me sane.  Leaving Hannah's side to go to Starbucks for wifi access was just not going to work.

What a wonderful blessing it was to receive an AirCard from some friends!  It was a great comfort to once again be connected to the world outside of hospice.

A hospice center can be a pretty depressing place for a kid to hang out.  Bethany was staying with us round the clock, and though she never complained, we knew it was not a very fun place for her to be.  In an effort to make her stay more tolerable, a dear friend of mine took it upon herself to drive her daughter an hour each way to the hospice center every evening after school and on weekends as well.  What a blessing it was for us to know that Bethany had the opportunity to spend time daily with her best friend and get a break from the difficult reality.

We can never adequately express how much these gifts (and so many others) meant to us.

My email from ten years ago today ...

Just wanted to touch base and let everyone know that we now have internet access, thanks to a wireless USB device that God provided for us through some wonderful people. What a blessing it has been to be able to communicate with everyone again...the emails we send and receive have really become such a huge part of our lives. We just got through reading all of our email from the last day or so, and we are overwhelmed and amazed at what God is up to simply as a result of what is happening in our's very humbling. To know that our precious child has touched so many lives is such a comfort!

Hannah has had a pretty good day today. She has slept almost all day long, but she woke up long enough to eat half of an orange this morning, and then to eat some fettuccine for supper. She has talked very little today, except for a little while just after eating supper, when she actively participated in a conversation about American Idol. Those of you who know Hannah know that she is a huge fan of that TV show, although she has really not been able to follow it this season. While we were talking about this year's contestants, she didn't have much to say, but when the conversation turned to previous years' contestants, she jumped right in. It was really nice to see a glimpse of "our" Hannah for a little while this evening. She did have a little bit of bleeding from her mouth again today, so they gave her two units of platelets, and she has been fine ever since.

We've been able to have some wonderful time with family over the last couple of days. The hospice center is wonderful and has been so accommodating to our rather large extended family. Because they are not full right now, they have graciously provided us two rooms, so Brad and Bethany are both able to stay here with Hannah and me. There is a very inexpensive meal program for families, so all our needs here are provided for. Again, we do welcome visitors, but wish to limit visitors to family only after 5:30 p.m., so we can have some private time in the evenings.

Again, we are so thankful that she is not in any pain. Our oncologist was so surprised that she did not have pain, because after looking at the scans, he said she really should be having severe headaches and nausea. She has had none of that, and what a blessing that is. We have so many things to be thankful for, but we are most thankful that Hannah's future is assured. Whether she is healed here on earth (which, at best, would only be a temporary healing...all earthly healings are temporary), or whether she is healed in Heaven (which would be a permanent healing), she is going to be just fine. As Bethany says, "Either way, Hannah wins." And that's why we can say that God is good, all the time!

Jill and Brad

"For whatsoever is born of God overcometh the world. and this is the victory that overcometh the world, even our faith. Who is he that overcometh the world, but he that believeth that Jesus is the Son of God?"  I John 5:4-5

Monday, February 18, 2019

Our Hardest Move

This post is #179 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.

February 18, 2009

Brad and I moved a lot during the early years of our marriage ... College, graduate school, first job, second job, etc.  Even after the girls were born, we continued to move frequently.  Moving is always stressful, yet there's usually excitement involved too ... a new house, new neighborhood, new friends.  We were used to moving and all that came along with it.  But today we faced an entirely different kind of move ... Moving Hannah from Arkansas Children's Hospital to a hospice center across town.

We gently explained to Hannah that we were going to be moving from Children's Hospital to another place which would be more like a home than a hospital ... a place where we would all be more comfortable.  She nodded her head in understanding.

Next we had to say goodbye to the doctors and nurses in the Hem-Onc clinic and on the gold floor.  They had cared for our entire family with such kindness for a full year.  Every one of them had worked so hard with such high hopes for Hannah's survival, and I know that our departure was just as painful for them as it was for us.

Then we waited for what seemed like a long time ... but we still weren't ready when the ambulance attendants appeared in the room with a rolling gurney. They deftly lifted her onto it and strapped her down.  She looked so small and fragile on that gurney with the downy soft, baby fuzz just beginning to grow back on her head.  She was awake, but her eyes were closed.  The rolling trip seemed to take us up and down every hallway of the hospital.  Our family trailed along behind, lugging all of our belongings, and trying not to meet the sympathetic eyes of the people we passed in the halls. I felt sure everyone knew where we were going.  We were clearly leaving, and one look at Hannah would have told them we were not coming back.

When we were still up in the room, we had asked the attendants if Bethany and I could both ride with Hannah, and they had told us only one of us could accompany her in the ambulance ... policy, you know. Bethany really, really wanted to ride with her, and we had decided we would let her do it, so she could have the memory of that final ride with her sister. My heart was breaking, though ... I couldn't imagine not sitting beside Hannah on that ride.

After they loaded Hannah up, one of the ambulance guys leaned out and said to me, "Do you still want to ride with us?" He didn't have to ask me twice ... I jumped right in! Bethany sat in the front with the driver, and I sat in the back on a little ledge near Hannah's feet.  I was so thankful for their compassion in breaking their policy just this one time!  Brad and several of our extended family members would follow in their own vehicles.

We drove through the city of Little Rock in no hurry, no lights flashing or siren blaring ... an eerily quiet ambulance, surrounded by cars full of people going on with their daily routines.  I could see them through the windows, and I was amazed at how normal their lives all seemed to be. The ambulance guy was so kind ... he made some effort at conversation, and I tried, but I really was not capable at holding up my end.

He finally gave up on the small talk and started filling out some paperwork.  He asked me for some basic information, including Hannah's social security number.  I knew her number as well as I knew my own, but at that moment, I could not for the life of me remember what it was.  I hemmed and hawed around for a little while, and then we were both shocked when we heard Hannah's voice reciting her social security number.  I didn't even think she was awake, much less aware of our conversation or capable of stating her social security number.  It was just like her to know something like that, and to answer for me when I was stumped!

We finally arrived at the hospice center, and they rolled her in and transferred her from the gurney to her new bed there. Once we got her settled in and sleeping, we left her with family members and went to the hospice office and did all the necessary paperwork. I remember feeling as though I were watching someone else responding to questions and signing her name.

The center had about twenty rooms, and only about five were in use at the time, so they very graciously allowed our family to have the use of two rooms. Hannah and I stayed in one room together, and Brad and Bethany had a room right next door. They also put us at the end of a wing, where there was a very nice, large sun room ... a perfect place for our extended family to gather. We basically had that whole wing to ourselves. It couldn't have been a better set up for us.

The day we moved to the hospice center was one of the most excruciating days of the entire year for all of us. When they put Hannah on that gurney and started rolling her out of the very familiar setting of Arkansas Children's Hospital's gold floor, it felt as though whatever little bit of control we might have had in the situation was finally completely gone. The process of giving Hannah up had begun. The weight of that as we rode in the ambulance made it difficult for me to even sit upright. And as we entered the hospice center doors for the first time, the sense of finality was overwhelming ... knowing that on the day we walked out that doors, we would be leaving without Hannah.

Yet, even in the midst of the devastating emotions of that day, God gave us peace. I don't know how. I can't even begin to explain it.  Looking back at it today, I really don't know how we survived it ... the only possible explanation is that God carried us through it. There were so many people praying for us, and I really believe that is what kept us going.

Then there was the knowledge that when Hannah did leave that place, her next destination was Heaven. There would be no more ambulance rides, chemo treatments, platelet infusions, or radiation sessions. And what could be sweeter than that?

The email below was actually sent on the morning of the following day, February 19, 2009:

Sorry for the lack of updates over the last 24 hours....the hospice center is a wonderful place, but it does not have any internet access available for families. I had to travel to a nearby Starbucks to do this update. We have not even taken the time yet to read all of the emails that have come in since yesterday, but we are looking forward to doing so. We believe we have the internet situation worked out, and should have access at the center soon, but I wanted to go ahead and send something out this morning.

The transport yesterday from Children's Hospital to the hospice center was thankfully uneventful. I was really nervous about how Hannah would handle the stress of the situation, but she did fine. As a matter of fact, the ambulance attendant asked me her social security number, and while I was hemming and hawing around trying to remember it, she told him what it was! I didn't even know she was awake or aware of our conversation. It was emotionally difficult to leave Children's Hospital...we have lots of memories there, and have truly come to love the people there, but it has been a good move for us. Our setting is much more home-like and comfortable, and we basically have a wing to ourselves in the hospice center. She continues to rest comfortably, and is in no pain or distress of any kind.

We do welcome any visitors who would like to come, but have decided as a family that we would like to cut off visits by 5:30 p.m., in order to allow us some private family time each evening. We really appreciate your understanding in this matter. We continue to rest in God's peace and in the comfort of your love and prayers.

God is good, all the time!

Jill and Brad

Sunday, February 17, 2019

Doughnuts and Decisions

This post is #178 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.

February 17, 2009

This day began with Hannah nibbling a Krispy Kreme doughnut and ended with us watching her every breath. 

We were able to meet privately with Hannah's primary oncologist while family members kept her company.   This is the doctor to whom we were introduced on the day we received Hannah's biopsy report ... the first person to utter the words "glioblastoma multiforme" ... and the one who had been with us every step of this journey.  He loved Hannah, and his heart was broken by what was happening to her.

He reviewed the MRI results with us in detail that morning.  He didn't show us the actual scans ... but we didn't need to see the scans to know they were bad.  The cancer had returned with a cruel vengeance.  He used the word "disturbing" as he described its progression throughout every part of her brain.  He explained that the chemotherapy treatments had probably bought us some time with her, but they were clearly no longer effective.

We asked him how long he believed we would have with her.  Of course, he couldn't know for sure, but he indicated that at most, we might have a few weeks.  He also gently explained that because of the location of the tumors on her brainstem, her death would probably occur fairly suddenly ... that when the tumors grew large enough, her brainstem would just stop telling her body to breathe.  He believed when that happened, she would simply stop breathing; that there would be no struggle, no pain, just a peaceful homegoing.

That was a great comfort to us.  After what had happened at our home the day before, we desperately wanted her earthly departure to be peaceful.

He recommended that we begin hospice care immediately, and we knew it was time.  All we had to do was make the decision whether to have hospice services come to our home, or to spend the last days of Hannah's life in a hospice facility.  Our choice was to go to a hospice center in Little Rock.

Several factors played a role in that decision.

  • It was very important to us to protect Hannah's privacy and dignity.  We had been blessed with so many wonderful visitors who encouraged us and supported us during this year of battling cancer ... but Hannah had always been a private person, and we knew she would not want people to be seeing her in her present condition.  There were a few exceptions ... family and very close friends ... but not many.  We knew it would be easier to control the flow of visitors at a facility.
  • We wanted to protect our time together as a family.  We did not know how much longer Hannah would be with us ... and we were fiercely protective of that time.  Staying at a center fifty miles from home would limit distractions and allow us to spend as much time together as possible.
  • We felt like this was the best decision for our daughter Bethany.  We wanted our home to be a "safe" place for her ... untainted by memories of her sister's death there.  
  • Most importantly, we wanted Hannah's platelet infusions to continue.  This is not typically a service provided under hospice care, and would not have been available to us in our home.  The bleeding episode home the day before had been a vivid illustration of how important those platelets were.  We had accepted that unless God intervened in a miraculous way, Hannah would be leaving for Heaven soon ... but we did not want her to bleed to death.
After discussing all of this with Hannah's oncologist, he accompanied us to her room and spent a few moments speaking with her.  He sat down on her bed and through tears he gently explained that he had done everything he could for her and there were no more treatments to try.  It was clear that she understood what he was saying, and she thanked him and said, "It's okay."  He patted her hand, got up, and Brad walked with him to the door.  As they stepped into the hallway together, a nurse called for his attention.  He responded, "I need a minute," and walked into his office.  We were touched by the depth of his emotion.

The hospice center did not initially want to provide the platelet transfusions, but the nurses and social workers worked behind the scenes to make it happen, which was a great relief.  We settled in for our final night at Arkansas Children's Hospital.  I remember how we stayed up for a long time and just watched her breathe as she slept.  After what her doctor said about the tumor compressing her brainstem, we couldn't help but wonder which breath might be her last. 

My email from ten years ago today ...

Just a quick update this afternoon....Hannah had a pretty good night last night. She was very restless all afternoon and early evening, but about 9:00 they gave her something to help her settle down and sleep. She slept pretty well after that, but had some periods of wakefulness where she would talk to us. It's difficult to understand some of what she says, but she is still working to communicate. This morning, she sat up and ate part of a Krispy Kreme doughnut (while communicating to us that it was not as good as a Spudnut ... you El Dorado readers will appreciate that!) She has slept peacefully all afternoon, but did wake up long enough to eat an orange.

Our regular oncologist came by and visited with us today. He said that the MRI indicated that the original tumor has returned, bigger than ever, all of the other existing spots are bigger, and there are new spots. He actually used the word "disturbing" to describe the progression of the disease. He did say that he believes the chemotherapy had some effect...basically, that it would be even worse if we had not done that...and that the chemo probably gave us some additional time. He came into the room and shared the results with Hannah and told her that we were out of medical options. She accepted the news gracefully and without fear.

It looks like we are going to spend another night here at Children's. We should be moving to a hospice facility here in Little Rock tomorrow morning. We have decided not to do a home hospice program due to the fact that Hannah has a continuing need for platelets to keep her from having any more severe bleeding episodes, and she cannot get those in a home setting. There is a hospice in Little Rock that is willing to provide platelet infusions, and our social worker is working out the details for us to go there. It sounds like an excellent facility. We have lots of family here with us, keeping us company. Hannah recognizes everyone and does her best to visit as she is able.

We are so thankful that Hannah is in no pain or distress, and is resting very comfortably and peacefully. We believe that the arms of Jesus are open wide to receive her when she is ready to go, and that provides an unimaginable peace. We have received so many wonderful emails over the past few days, and although we cannot respond to all of them, please know that every one is being read, treasured, and saved. We are so blessed to have so many wonderful prayer warriors lifting us before the throne. Thank you.

God is good, all the time!

Jill and Brad

Saturday, February 16, 2019

A Devastating Day

This post is #177 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.

February 16, 2009

**WARNING** - This post is fairly graphic and could be upsetting to some.  You may wish to skip the portion I've written and just read the email from this date if you think it may bother you.

Hannah was on a pretty strong dose of steroids, which had to be administered every eight hours around the clock.  It had become part of my routine to set my alarm, get up during the night, go to Hannah's room, and help her take her medication.  I would flip on her closet light, which gave us just enough light to do what we needed to do without making it too bright in there.  At 2:30 in the morning on this date ten years ago, I went into Hannah's room and gave her her meds, which she took without incident.  I went back to bed, but was still lying awake thinking about the MRI scheduled for that afternoon when I heard her softly calling me.  I went back down the hall to her room, thinking she probably needed to go to the bathroom.

I entered her room and flipped on the closet light.  There was an odd, coppery smell in her room.  As I leaned over her bed to see what she needed, I placed my hand gently on her pillow ... and immediately withdrew it.  There was something wet, warm, and sticky on her pillowcase.  I assumed she had gotten sick, and I pulled the closet door open a little wider to allow more light into the room.  I still couldn't see what was on her black pillowcase, but then I looked at my hand ... and it was red.

I almost screamed, but I managed to choke it back.  I didn't want to frighten Hannah or awaken Bethany.  Instead, I just calmly but urgently said, "Brad" ... "Brad" ... "Brad" ... at increasingly louder levels until he woke up and came into her room.  By this time, I had turned on the overhead light and helped Hannah sit up in bed, and the scene was pretty disturbing.  She had been bleeding heavily from her mouth and nose and blood was all over her face, her hair, her shirt, and her white and black comforter.

Our first thought was to call an ambulance, but we lived in a pretty rural area, and realized that by the time an ambulance got to our house we could be halfway to Children's.  We knew we would be driving past a good-sized hospital in Benton on our way to Little Rock, so if we needed to stop there on the way, we could.  We also didn't want to panic Hannah or terrify Bethany, who was still asleep, by having an ambulance pull up our driveway with lights and sirens blaring.  We made a quick decision not to wake Bethany; we did not want her to see her sister in this condition.  Instead, we left her sleeping in her bed and called a neighbor to come stay at the house so she wouldn't be alone when she woke up.

Hannah was remarkably calm; much calmer than we were.  She really didn't even seem to be aware that there was a problem.  She had been sleeping in a t-shirt, which was now full of bloodstains, and as I cleaned her face and neck and helped her get dressed to leave for the hospital, I pulled a clean shirt out of her drawer for her to wear.  Nope, she didn't want to put on a different shirt, and no amount of explaining why she really needed a clean shirt would convince her to change her mind.  So I decided not to fight that battle and we slipped some pants and shoes on her and off we went.

The early hour meant there were few other cars on the road and I'm pretty sure Brad broke every traffic law as he drove.  The bleeding slowed and had nearly stopped by the time we reached the ER at Children's.  We certainly drew everyone's attention when we entered the doors with Hannah sitting in her wheelchair in a heavily bloodstained shirt.  They got us processed quickly and admitted her.  Her blood work revealed very low platelets, which is what led to this bleeding episode.

Surprisingly, her doctors decided to go ahead with the MRI, even with all of this going on.  Always a good sport, she agreed to give it a try.  Brad and I got on either side of her and assisted her in walking from her wheelchair to the MRI table, and then helped her back to her wheelchair when it was complete.  That simple detail stands out in my memory because it was the last time she ever walked.  She had to be lifted from the wheelchair to her hospital bed when we got back to her room after that MRI.

The MRI results were reviewed with us that afternoon and they were devastating, but not unexpected.  We would soon be faced with decisions we never thought we'd have to make on behalf of our teenage daughter.  But for that night, we just settled into the familiarity of the hospital and tried to get some rest.

My email from a decade ago ...

I'm sure most of you know that we were scheduled to be at Children's this morning for an MRI; however, the day has not turned out exactly as planned. I went into Hannah's room at 2:30 this morning as I always do to give her her steroids and she was fine, but then she called me back in about 3:00. When I went in, I discovered that she was bleeding heavily from her mouth and nose, and had been for awhile. We considered calling an ambulance, but then it started to slow a little, so we threw on some clothes and loaded her up. We called a neighbor to come over and stay with Bethany while she slept...we didn't want to wake her up because it was not a pretty scene. Bethany is here with us now, thanks to her Uncle Wes, who brought her to Little Rock later this morning.

We got to Children's about 4:30 and got into the ER. Fortunately, it was not very busy at that time of the morning. They did bloodwork right away, and her platelets were quite low. Platelets are the clotting mechanism in your blood so when your platelets are low, you bleed freely. We were still able to do the MRI (just the brain, not the spine) although she had to have some breaks. We are now up in the Hematology/Oncology clinic getting our second unit of platelets. She is still having some bleeding, but hopefully the platelets will help with that. She is stable right now and resting fairly comfortably, although her blood pressure is staying pretty high.

We were able to visit with an oncologist this afternoon about the MRI results (not our regular oncologist, but one we've seen frequently). She shared with us that the results indicated that the cancer has spread to various points throughout her brain, and there is hydrocephalus (swelling) present. The hydrocephalus is particularly dangerous, because it can cause the brain to compress down into the brainstem, which is the area that controls blood pressure, breathing, and heart rate. We will stay here overnight tonight, and tomorrow we will have to make some decisions regarding hospice care. Please pray that we will have the wisdom to make the right decisions for Hannah and for our family. The doctor told us that without miraculous intervention, her time on earth could be very short.

Of course, we are deeply saddened by this news, but at the same time, we are filled with the peace that only God can give. He has been faithful to us through every step of this almost year-long journey, and we know He will be faithful to see us through.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7

God is good, all the time!

Jill and Brad

Thursday, February 14, 2019

Red Roses On Repeat

This post is #176 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.

February 14, 2009

Valentine's Day.  Exactly one year had passed since Hannah had shown the first symptoms of the brain tumor which was now slowly taking her life.  It had been a roller-coaster year full of MRIs, needle sticks, radiation treatments, chemotherapy, hair loss, platelet infusions, and hospital stays.  We had watched our daughter go from a vibrant, healthy 16-year-old with high academic aspirations to a weak, nearly-blind 17-year-old with the mind of a little old lady with Alzheimer's.   But in spite of the physical and mental changes cancer had wrought, it had not stolen her sweet spirit.

From the time the girls were little, Brad established a tradition of getting them roses on Valentine's Day.  They always looked forward to receiving this special gift from their Dad. 

This particular year, Hannah got a lot of enjoyment out of her roses. She had very little short-term memory by this time, so every time she saw the roses, it was as if she had just received them.  She said again and again, "Oh, Daddy ... they're so pretty. Thank you!"  This was especially significant because she was talking very little at this point.  Sure did make her Dad feel good. 

I remember that day as a sweet, peaceful day spent together as a family, enjoying our time together and gently chuckling at Hannah's exclamations.  She was scheduled for an MRI that Monday, but there was no "scanxiety" this time.  We knew what it would show, and while we didn't like it and our hearts were broken, God had given us a peace about the future. 

I am grateful for that peace-filled day ... because within 48 hours that sense of peace would be severely shaken. 

Wednesday, February 13, 2019

Our Valentine Princess

This post is #175 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.

February 13, 2008

It was Friday, and time for the junior high Valentine dance, and even though Bethany had been out of school since Tuesday, she had made plans to attend.  Since Brad was available to be home with Hannah, I was able to spend the day with her.  We already had her dress, and I enjoyed taking her to get her hair and make-up done that afternoon at my regular salon.  She had plans to ride to the dance with a group of friends, so I figured once we got her all beautiful, she would head out for the evening and I would see her when she got home.

That afternoon, we received a phone call from one of her teachers letting us know that Bethany had been voted as the Valentine Dance princess by her fellow students.  It would be a surprise for Bethany that evening, so she didn't want us to tell her ... She just wanted me to know about it so I could come to the dance and see her crowned if I wanted to.  Of course I wanted to!  We let her leave for the dance with her friends without giving away the surprise, then I drove to the gym so I could be there for the coronation.

Bethany looked beautiful, and I was so glad I was able to be there for her big moment. But oh, what a surreal experience it was!  I had hardly been out of the house at all (other than to Children's Hospital and back) for several weeks, and suddenly I was in a crowded room full of strobe lights and loud music.  I felt awkward and self-conscious, and almost as if I was watching the entire scene unfold before someone else.  And I found myself face-to-face with all these wonderful, concerned people who wanted to know how Hannah was doing.  I struggled mightily to formulate an honest answer to that question when her condition was so fragile.  And how strange it was to see one daughter at a dance so vibrant and alive, while the other daughter was at home just a shell of her former self.  The swirl of emotion that night was indescribable.

Yet I was grateful to have that opportunity to celebrate Bethany and to experience that island of normalcy in the midst of a very choppy sea.  I was so proud of her and the grace with which she was handling all that was going on in her young life.

Tuesday, February 12, 2019

A Painful Decision

This post is #174 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.

February 12, 2009

During our clinic appointment ten years ago today, we had the opportunity to chat with Hannah's oncologist while she received her requisite platelet infusion.  She was scheduled for an MRI on Monday, which would tell us a lot about what the future might hold.  Her doctor was very honest with us, explaining that he believed the results would indicate progression of the cancer.  He went on to say that if that was indeed the case, there was very little, if anything, that could be done for her medically from this point on. 

Of course that kind of news is jarring ... but it came as no surprise.  At home, we were seeing daily declines in Hannah's vision, motor skills, cognitive ability, and communication ... even her ability to care for her own most basic needs.  Yes, we knew that God could (and still might!) choose to perform a miraculous healing ... but it was becoming more and more evident that that was probably not going to be His plan for Hannah.  Please understand that this was not a lack of faith on our part, but rather a deep down, rugged faith that God held her life in His loving hands and would only do what was best for her.  And that faith was not something we simply mustered up, for we were utterly incapable of doing that on our own, but a gift from the God who loved us as well. 

We found ourselves in a position where we had to make some decisions for our daughter, who could no longer make decisions for herself.  Together we determined that Hannah's dignity should be protected above all, whatever lay ahead.  She was still our naturally-reserved 17-year-old daughter, with all the emotions and inhibitions of a teenage girl.  And that was why, before we left the hospital that day, Brad signed a "Do Not Resuscitate" or DNR form.  We did not want Hannah to go through the trauma of an attempted resuscitation when its only result would be to delay her arrival in Heaven by a few weeks.

My email from a decade ago reveals none of the swirl of emotions accompanying this decision ...

We're already home this afternoon from our clinic visit at Children''s nice to be home so early in the day! Hannah's platelets were 29,000 today, so she got a platelet infusion, and we were able to visit with our oncologist for a few minutes. 

We are scheduled for an MRI first thing Monday morning, but he is a little bit concerned about Hannah's ability to tolerate lying perfectly still in that tube for so long in her weakened state. We will try it, but if she can't do it, we will do a CT scan instead, which only takes a few minutes as opposed to an hour or more. 

Because Monday is a holiday, the radiologist won't be there to read the scan, so we will not get any results until probably Wednesday. Our oncologist has indicated that he believes the disease has progressed, and he is expecting the MRI to show that. We will meet with him about the results next week, and discuss our possible next steps. He has indicated that we have very few options, if any, available to us at this point as far as further treatment. 

We know that God is still in control, and with a single word, He can turn all of this around....but we also know that His will is perfect, and He may choose to provide His healing in heaven. Either way, Hannah will be victorious!

"Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands." 2 Corinthians 5:1

God is good, all the time!

Jill and Brad

Sunday, February 10, 2019

A Bruising of a Blessing

This post is #173 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: ThePitcher on / CC BY-NC-SA
February 10, 2008

After hearing the news that we may just have six to eight weeks left with Hannah, Brad and I sat down together and made some decisions.  One was that he would take a leave of absence from his job as her high school principal.  Part of this was just practicality ... as Hannah was able to do less and less for herself, he would be needed to help with her care.  She was basically the same height and weight as me and while we had been managing pretty well so far, I knew I wasn't going to be able to lift her anymore when she could no longer "help" me.

But really, he took the leave of absence in order to spend as much time with Hannah as he could.  And for that same reason, we also made the decision to pull Bethany out of school.  She wasn't learning a thing anyway ... She couldn't focus on school with all that was happening at home.  If she missed six or eight weeks of school and had to repeat a grade, so be it.  We wanted her to have every possible moment she could with her big sister.

So from that point until Hannah went to Heaven, it was the four of us together at home.  While the whole situation was heartbreaking, we made some sweet memories together as a family.

The cancer ravaging her brain had made Hannah very childlike.  Most of her communication at this point was limited to questions, which she would ask over and over.  Her favorite question was, "What time is it?"  And no matter how we answered her -- 10:00, noon, 7:00 -- she would say, "No, it's not."  She didn't know what time it was, but she was sure we were wrong whatever our response was.  She was probably confused because she was sleeping so much.  We finally started responding to her question by asking her what time she thought it was ... and whatever she said, that's what time it was.

Her confusion about time also caused her to want to eat at all hours of the day and night.  Whenever she woke up, it was time to eat ... even if it was the middle of the night.  And you know what?  We didn't mind.  She enjoyed her food, and if she said she was hungry, we brought her whatever she wanted.

As time went by, her favorite food choices narrowed down to three things ... Special K with Red Berries, oranges, and Michelina's frozen fettuccine microwave meals.  She might eat a bowl of Special K at 2:00 in the morning, and by the time I got her bowl put in the dishwasher, she would be ready for some fettuccine ... completely forgetting she had just eaten cereal.  No problem.  Two minutes in the microwave, and her fettuccine was ready.  I wasn't going to deny her her pasta.

One area in which we had to be pretty firm with her was in regard to showering.  We didn't make her shower often because it was difficult for her, but you can only go so long without showering before it becomes necessary.  I would get in the shower with her and help her stand and soap up, and she tolerated it pretty well.  But when we would suggest that it might be time to take a shower, she would insist that she had just had one.  I don't think she was lying or being insolent ... She honestly believed she had just had one!  She had such a skewed sense of time, in her mind her last shower had probably just been a few minutes ago.

I've always wondered how parents of children who have special needs do what they do each day.  This experience with Hannah gave me just a tiny glimpse into their world, and I believe I now understand a bit better.  If Hannah's cancer progression had stopped there, and the doctors told us that she would live a normal life span, but with these limitations, I would have embraced that lifestyle without hesitation, just to have her here with us.  I would have cared for her bathroom needs, fed her, lifted her, answered her repetitive questions ... because I loved her just as much in that condition as I had loved her for the seventeen years leading up to that time.

As hard as those days were to live through, I was grateful God allowed the four of us the opportunity to experience them together.  It was a "bruising of a blessing," as Joni Eareckson Tada likes to say. 

Caring for our daughter and sister during those final weeks of her life was a God-given privilege and honor.