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

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