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 lives....it'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....it'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 VisualHunt.com / 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. 

Saturday, February 9, 2019

An Unforgettable Gift of Kindness

This post is #172 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 9, 2009

When we arrived at the Hem/Onc Clinic on this date ten years ago, my heart sank.  The usual routine upon arrival at the clinic was to spend some time in the waiting room, then go to triage' where weight, blood pressure, etc., are checked, then come back out to the waiting room and wait some more for either an exam room to open up, or a bed to become available if the patient is there for an infusion of some sort.

On that particular day, the waiting room was packed and every bed in the infusion room was full. It was obvious we had a long wait in front of us. Hannah was completely exhausted just from the ride to Little Rock that morning, and could literally barely sit up in her wheelchair.  The brightness of the waiting room assaulting her dilated pupils made things even more uncomfortable for her.  I didn't know how we were possibly going to make it through the morning.

One of the nurses noticed Hannah's struggle, and called us back before it was our turn.  She led us to a conference room which contained one of those pull-out sleep chairs that you find in hospital rooms, and fixed it so Hannah could lay on it while we were waiting for an available bed so she could get her platelets.  She turned on a lamp and then flipped off the light switch as she closed the door behind her, giving Hannah the gift of sweet rest in privacy.

The remembrance of that gift brings tears to my eyes even today.  Maybe they do that for every child who's in Hannah's situation ... but I know those nurses had a special fondness for Hannah.  And for us that day, it felt like a special, secret honor.  A parent never forgets kindnesses given to their children, and this particular gift of kindness will live in my memory forever.

We did finally get her platelet infusion that day, and while I sat with her, Brad took advantage of the opportunity to speak to her primary oncologist alone.  Every time her doctor spoke with us, Hannah was present and listening, so he was always very careful with his words.  It was time to have a conversation without that filter.  Through tears, he shared with Brad that Hannah might have just 6 to 8 weeks to live, and that it might be time to consider hospice care.  He told Brad that Hannah was just the kind of girl he would have chosen for his son to marry.  I believe his heart was truly broken over what was happening to her.

My email from a decade ago reveals none of this ...

We are at Children's Hospital, waiting for platelets again....her platelets were 37,000 today, so she definitely needs some. Her ANC (immunity level) has risen up to 873, which is an improvement from last week, and most of her other counts are pretty good.

Hannah really seems to have lost some ground over the last several weeks. Because of the location of her tumors, she is sleepy all the time, and sleeps about 20 hours out of every day. The tumors are also affecting some of the cranial nerves, causing her eyelids to droop and making it difficult for her to keep her eyes open sometimes. Her near vision is very poor, but her distance vision is still good enough to be able to watch TV. She is frequently confused now...forgetting things that just happened a few minutes ago and asking the same questions over and over....although she can still solve the puzzles on Wheel of Fortune before the rest of us can! 

She is physically very weak, needing assistance for almost everything now. Her appetite is good, and she really enjoys eating...and even still likes to go out to eat when her counts are high enough. Our doctor tells us that some of these side effects may be related to the chemotherapy and steroids she's taking, but some of them are probably also related to the cancer. It's very difficult to identify what is due to medication and what is due to the disease. Seeing these changes take place in her is by far the most difficult part of this journey.

She will have an MRI next Monday, the 16th, which will tell us a lot about what the future may hold. Of course, we know that it is God who holds the future, and who holds her in His hands...and He alone knows what is to come. We will continue to trust in Him to do what is best for Hannah, and in the meantime, we will enjoy every day as it comes. We are so thankful that she is in no pain, she has no nausea, and she has no seizure activity, which is so common in brain cancer patients. We continue to boldly ask God for healing, while acknowledging that He is sovereign in these matters.

We are also thankful that Bethany has completely recovered from being sick last week, and is back to feeling 100%. She will be playing basketball tonight, in the first night of the junior high district tournament, and is really looking forward to it. She LOVES basketball, and it's been a great distraction for her with all that's been going on in our family lately. We want to say a big THANK YOU to all of her teachers and coaches, who have really been a wonderful support system for her over the last several months. You all have really made a difference in her life, and we are grateful!

As always, we thank you for your faithful prayers for our family...God truly is good, all the time!

Jill and Brad

Tuesday, February 5, 2019

In the Middle of the Storm

This post is #171 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 5, 2009

My email from ten years ago stands on its own today ...

I don't have anything new to share as far as an update today...I just want to share some things that have been on my heart lately.

Every day, we hear from at least one person (usually several people) about how much Hannah's story has touched, or even changed, their life. It is such an incredible blessing to us to hear that, and I want to take a minute to explain why. The night before Hannah's brain surgery last February, she shared a story with us that she had never told us before. Many of you have heard this story; most of you probably have not, so with her permission I want to share it with you now. 

A little less than a year before Hannah got sick, she participated in a special youth retreat event with our church called Disciple Now.  A special speaker was brought in for the weekend, and one evening he talked to the kids about how God sometimes uses storms in our lives to mature us, and to give us an opportunity to demonstrate the love of Christ to those around us. As he talked, she began to realize that she had never experienced a real storm in her life, and when she prayed that night, she asked God to send her a storm, so that through it, she could glorify God and bring others to Him. 

She is in the middle of that storm right now, and you have been a part of it by reading these emails and following her story...so if you find that your life has changed, or that you are walking closer with the Lord as a result of what is happening in her life...you are an answer to her prayer. If you are not a Christian, but if Hannah's story has caused you to consider the claims of Christ, maybe for the first time, you are an answer to her prayer. I don't think I can say it any more simply than that. Knowing that Hannah prayed this prayer has been an enormous comfort to us, and it's been amazing to see the many ways that God has answered it.

I close by sharing with you the lyrics of a song by Casting Crowns off of their Lifesong album...a song that has had special meaning to us over this past year during Hannah's battle with brain cancer:

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen" and it's still raining.

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hand and praise the God who gives
And takes away.

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm.

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find you?

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

I will praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm.

God is good all the time. ~Jill

Monday, February 4, 2019

Weary

This post is #170 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 4, 2009

After a long night, we were released from the hospital, came home, and went straight to bed.  I'm not sure why they decided to try the lung therapies with Hannah during the overnight hours, but they did.  Just as we were getting ready to go to sleep for the night, the respiratory folks came in with a high frequency chest wall oscillation vest for us to try.  This is a device used by children and adults who have cystic fibrosis and it works by vibrating the chest at a high frequency in an effort to loosen and thin mucus.

Hannah was so weak that just sitting up required great effort.  We got her seated upright on the bed, the vest was strapped on, and the vibrations began.  The therapist made sure everything was working okay and stepped out of the room, explaining that she would be back in five minutes to allow Hannah to cough.  She did okay with that first round, although it did not result in a productive cough.  The second round would be longer in hopes of producing a better cough, and once again the therapist left the room.

Within just a couple of minutes, Hannah really began to struggle.  The pounding on her chest was more than her weakened body could bear.  I positioned myself behind her and wrapped my arms around her to help her stay upright and to try to absorb some of the blows with my own body.  We made it for several more minutes like that, but she just couldn't do it.  She became very nauseous and began pleading to stop.  I punched the call button and that was the end of the cystic fibrosis vest.  We were both incredibly relieved when it was removed.

Since the vest was a fail, the next step was a CPAP machine.  They were concerned about keeping her oxygen levels up while she was sleeping, so I suppose the CPAP was a logical choice, but she really struggled with that, too.  She was very uncomfortable wearing it, and it actually seemed to frighten her a bit.  She tried ... she really tried ... to wear it, wrestling with it throughout the night.  She was so miserable, I finally just took it off of her.  I had been watching her oxygen sats with it on, and I watched them with it off, and there was no difference ... well within the normal range either way.  This is a girl who had never complained in spite of everything that had been thrown at her over the past year.  If she didn't want to wear a vest or a mask ... I wasn't going to make her.

After that sleepless night, we spent the morning in the Pulmonary Lab having multiple tests done.  Oh, it was hard to watch as she dutifully attempted everything they asked her to do.  She was so weak and fatigued, yet she was polite and cooperative with the nurses and therapists.  She tried to answer their questions the best she could, but words were failing her.  They finally let us go, sending us home with an incentive spirometer to exercise her lungs. 

During this hospital experience, it hit me full force how weary Hannah was becoming.  She had been so strong for so long, and her body (and mind) were finally wearing down.  It was clear that she was in the process of dying, and as much as I didn't want her to go, I also didn't want to push her beyond her limits. 

I really just wanted to take her home and let her live the time she had left without chemotherapy treatments, platelet infusions, spirometers, and isolation masks.  It was time for her to rest.

My email from a decade ago ...

There's no place like home, there's no place like home....At least that's how Hannah and I are feeling this afternoon! We were home by 12:45, and we both headed to bed. She is still snoozing, but I'm up and feeling a little more like myself after a two hour nap. The lung therapies they tried on Hannah kept us awake most of the night, and neither one was particularly helpful. She really could not tolerate the vest which squeezed (actually shook) her lungs (this is the type of vest used for kids with cystic fibrosis) and she did not like the CPAP machine at all. The vest was supposed to help her produce some productive coughing, and it really didn't...but her congestion does seem to have gotten much better on its own. The CPAP machine was supposed to keep her oxygen levels up overnight, but really wasn't necessary, because the monitor they put on her indicated that her oxygen levels were consistently strong all night, whether she was wearing the mask or not. So, all in all, good news, I guess, just made for a long night!

At 9:00 this morning, they came in and told us that we were heading down to the Pulmonary Lab for some more tests. So, we headed down there, and they did some breathing tests to determine Hannah's lung capacity, etc. It really wore her out, but she was a good sport, and tried to do everything asked of her. We did not get any results before we left, but I suppose we will hear more when we return to the clinic. Her bloodwork was much better today...good red counts and platelets at 66,000, so there was no need to wait for any blood products, and we got to go home pretty early. We'll return to the clinic on Friday for our next bloodwork, and platelets if needed.

Bethany seems to be feeling better, so that's good....thank you so much for your prayers for her, as well as the rest of us. God continues to remain faithful, walking with us every step of this journey, just as you are. We are eternally grateful. He is good, all the time!

Jill and Brad

Sunday, February 3, 2019

Unwavering Faith

This post is #169 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 3, 2009

It may sound strange to say that even though Hannah had been battling brain cancer for nearly a year, she really hadn't been "sick" very much.  Yes, she dealt with ongoing headaches, nausea, low platelets, and fatigue, but for the most part, she had been able to cope with these things and still live her life.  Her only hospitalizations, other than her initial surgery, had been for fevers that spiked up when she was neutropenic.  And during those hospitalizations, we would watch movies or TV shows together (one time we watched the entire Facts of Life series), and she took advantage of the opportunity to order chicken strips and macaroni & cheese from the ACH room service menu any time she wanted them.  Sure, we would rather be home, but we always managed to have some fun together during our hospital stays.

This hospitalization was different.  This time she was sick.  Her lungs were full, and she was too weak to cough productively.  She was severely anemic, and too fatigued to do much of anything but sleep.  Blood products were transfused in an effort to alleviate the anemia and fatigue, and her doctors wanted to try some treatments to see if they could help improve her lung function.  Other than that, there wasn't much they could do for her. 

In spite of everything, her faith did not waver, and she continued to greet her doctors and nurses with a smile no matter how bad she felt.  She still didn't complain or question why this was happening to her.  I was so proud of my girl.

My email from ten years ago today ...

Well, we are spending another night in the hospital. Hannah has had a few albuterol breathing treatments today, and they are going to do a couple of different kinds of treatments tonight. One involves wearing a vest which will squeeze her lungs, and the other is a CPAP type breathing machine that she will use overnight. She received two units of blood today and a unit of platelets ... her red blood counts had dropped pretty dramatically just since yesterday ... apparently a side effect of the chemo. She has slept away most of our stay this time, so hopefully this infusion of blood will help with her energy level. They tell us we will probably go home sometime tomorrow.

Bethany has developed a pretty severe cold...a strep test was negative, but the doctor put her on an antibiotic just to make sure, since Hannah's immunity is so low. Please pray that she recovers quickly and that none of the rest of us get it, especially Hannah. Your prayers continue to carry us along day by day, and we thank you for that.

"The goodness of God endureth continually." Psalm 52:1

Jill and Brad

Saturday, February 2, 2019

Mobility Issues

This post is #168 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 2, 2009

We were now using a wheelchair exclusively for our trips to Children's Hospital, and had become pretty well resigned to its use away from home.  But as time went on, Hannah was becoming less and less able to walk independently, even in our home.  She began to depend upon one of us to support her as she walked from the living room to her bedroom, and needed assistance to stand from a seated position.  In an effort to allow her more independence, we ordered a walker from medical supply, thinking she could use that to get around the house without always having to wait on one of us to help her.

She used that thing one time to walk from her bedroom to the living room, then disdainfully pushed it aside and said, "This makes me feel like an 'oldie'."  So we put it down in the basement and never brought it out again.  After all, we really didn't mind helping her.  I especially enjoyed helping her out of her recliner ... I would lean forward, we would wrap our arms around each other, and together, we would stand up.  Then we would hold each other just a bit longer to make sure she was steady on her feet before I would move around to her side.  Her hair was growing in, soft and fine like baby's hair, and I loved nuzzling my nose into her neck as I lifted her.  Hannah had never been a hugger growing up ... she wasn't even much of a cuddler as a baby ... so those moments of physical closeness were treasured.

Her decreased mobility was beginning to cause her some new issues, though.  My email from a decade ago explains ...

Today is our regular clinic day at Children's Hospital. Hannah's platelets were just 17,000 today, so we have already gotten a platelet infusion, and we are now waiting for her chemo treatment. She still has her cough, so the doctor listened to her lungs again today, and then ordered a chest x-ray. The x-ray showed no pneumonia (Thank you, Lord!), just a lot of "stuff' in her bronchial tubes. He feels that this is due to her not moving around much and the fact that her cough reflex is very weak right now.

So...she will be admitted to the hospital for some pulmonary tests and some experimental therapies to see what we can do to improve her lung function. He said that we should just be in the hospital for a day or two. We're thankful that they are being proactive and getting this taken care of before it turns into something more serious. Her immunity has risen somewhat (380), but she is still below the isolation cut-off of 500. We're hoping that getting her lungs cleared up will help her feel better, too, and give her some more energy.

We are so thankful for all of you...those who read these emails and are so faithful to lift us up in prayer. You continually keep us encouraged and remind us that God is good, all the time!


Therefore, having been justified by faith,
we have peace with God
through our Lord Jesus Christ,
through Whom also we have access by faith
into this grace in which we stand,
and rejoice in hope
of the glory of God.
Romans 5:1-2

Jill and Brad