Saturday, October 13, 2018

Family Photo Shoot

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

October 13, 2008

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

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

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

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

My email from ten years ago today ...

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

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

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

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

Jill and Brad




Tuesday, October 9, 2018

"Having Better Days"

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

October 9, 2008

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

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

My email from ten years ago today ...

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

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

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

Brad and Jill

Saturday, October 6, 2018

Somewhere On the Highway In Between

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


October 6, 2008

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

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

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

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

Jill and Brad

Wednesday, October 3, 2018

Homecoming 2008

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


October 3, 2008

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

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

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

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

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

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

And my email ...

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

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

Jill and Brad

Tuesday, October 2, 2018

"It's Only Hair"

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

October 2, 2008

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

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

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

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

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

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

Jill and Brad

Saturday, September 29, 2018

A Little More Time

This post is #107 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.

September 29, 2008

When Hannah completed her first round of radiation treatments on April 25, 2008, the technicians at CARTI gave her a little party to celebrate her last treatment.  What a relief it was to have that part of her treatment protocol behind us!  So it was a bit surreal to find ourselves returning to CARTI just five months later, about to start the whole process all over again.  One of the most jarring things about this appointment for me was watching Hannah patiently lie still on the table as the technicians created a new radiation mask for her ... this one extending all the way down over her shoulders and chest.  What a nightmarish-looking thing it was.

While I was sitting with Hannah as she underwent this process, Brad talked privately with her radiation oncologist.  The doctor explained to him that we should not view these new radiation treatments as a potential "cure", but that they might give Hannah a little more time.  Up to that point, none of these medical people had talked to us in terms of "time."  Our understanding had always been that we were working toward a cure.  Very gradually, we were beginning to come to an awareness that all our efforts were simply to give her "more time."

My email from ten years ago today ...

Today we went to CARTI (Central Arkansas Radiation Therapy Institute) for our initial consultation for Hannah's new radiation program. She had a CT scan and they made new molds for her to wear while she is on the table during the radiation treatments. We had a brief meeting with her radiologist/oncologist. He explained that determining the radiation field is going to be a somewhat complicated process, because they have to be very careful not to re-radiate the areas of her brain that were done before. They will be comparing today's CT scan with the scan done in February to determine exactly what areas can be radiated. We will be meeting with him again on Thursday to find out the exact plan of treatment, and should begin radiation that day. If it takes them a little longer to determine the plan, we may not go again until Monday, but as of right now, we are scheduled to begin on Thursday. We are anxious to get started and begin shrinking those tumors; however, we want them to take the time they need to be precise. The CT technicians explained to me that her radiation will be somewhat different this time ... using something called "tomotherapy".  CARTI is the only location in Arkansas that has one of these type of machines, and it is considered state of the art. We feel very comfortable that Hannah is in the best earthly hands possible.

This past weekend was a very good one. We were able to spend lots of time visiting with friends and family, and were able to participate in a special prayer time in our church for Hannah. We feel that God is calling us to be faithful to Him throughout this journey, and we definitely feel His peace upon us. We are so appreciative of all the many, many emails, phone calls, cards, and gifts we have received over the last several days. We have been contacted by people we haven't heard from in years, people who we don't even know, and people from around the world who tell us they are praying for Hannah. What a blessing! God is truly in control, and He is good all the time!

Brad and Jill

Thursday, September 27, 2018

Googling Glioblastoma

This post is #106 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.

The day we returned to Arkansas Children's Hospital to have the sutures removed after Hannah's brain surgery in February 2008, we were told that her tumor was a Grade IV Glioblastoma Multiforme. My brain immediately started whirring; mentally spelling out g-l-i-o-b-l-a-s-t-o-m-a, fully intending to google it the second we got home. Then the doctor's voice brought me back to that little treatment room ... he was saying, "Now, don't go home and google glioblastoma. You won't like what you read about it ... and besides, what you read won't apply to Hannah anyway. Most people who get glioblastomas are older and the prognosis is not good. She's young and healthy, and with treatment, I think she's got a good chance of cure."

Our family made several decisions that day, the biggest of which was that we were going to place Hannah in God's hands and fully trust Him in this situation. One small part of that larger commitment was to follow the doctor's advice and not google glioblastoma. I studiously avoided any information about glioblastoma cancer. When Ted Kennedy was diagnosed with glioblastoma about a month later, I put my fingers in my ears and sang, "La la la la la la la" every time they talked about it on the news. Well, not literally, but you know what I mean! I did listen to the Ted Kennedy stuff enough to know that he was on the exact same treatment protocol (surgery, radiation, Temodar) as Hannah was ... and I figured, if that's what Ted Kennedy is getting, it must be the best treatment available. So I felt good about the treatment she was getting.

Over time, it almost became a source of pride for me. I had so much faith that God had everything under control, I didn't need to know anything about glioblastoma. And things were going so well. Hannah had completed her radiation treatments, she'd had several clear MRIs, she was dealing well with the oral chemo drug. Actually, I was kind of afraid that if I did google it, what I saw might shake my faith ... so I resolutely continued my glioblastoma google fast.

Then, in September of 2008, seven months after our first meeting with that doctor, we met with him again. This time, he gave us the news that Hannah's cancer had returned, in the form of multiple tumors on her brainstem and spine. With tears in his eyes, he explained that Hannah had less than a five percent chance of survival with this recurrence.  As we drove home from that appointment, I decided it was time to google, and shortly after we arrived, I sat down at my computer.

Here's what I read on Wikipedia:

"Glioblastoma Multiforme (GBM) is the most common and most aggressive type of primary brain tumor in humans. Despite being the most prevalent form of primary brain tumor, GBM's occur in only 2-3 cases per 100,000 people in Europe and North America.

Glioblastoma has a very poor prognosis, despite treatment consisting of craniotomy with surgical resection (removal) of as much of the tumor as possible, followed by concurrent or sequential chemo therapy, radiation therapy, and symptomatic care with corticosteroids. Other than the brainstem gliomas, it has the worst prognosis of any CNS (Central Nervous System) malignancy.

It is very difficult to treat glioblastoma due to several complicating factors:

* The tumor cells are very resistant to conventional therapies
* The brain is susceptible to damage due to conventional therapy.
* Many drugs cannot cross the blood-brain barrier to act on the tumor.

Common symptoms of the disease include seizure, nausea, headache; the single most prevalent symptom is progressive memory loss, personality changes & neurological deficit.

Symptomatic therapy:
Supportive treatment focuses on relieving symptoms and improving the patient's neurological function. The primary supportive agents are anticonvulsants and corticosteroids.

* Historically, around 90% of patients with glioblastoma underwent anticonvulsant treatment, although only about 40% of the patients required this treatment. Recently, it has been recommended that neurosurgeons not administer anticonvulsants until a seizure occurs.

* Corticosteroids, usually dexamethasone given 4 to 10 mg every 4 to six hours, can reduce edema (swelling), diminishing mass effect and lowering intracranial pressure, with a decrease in headache or drowsiness.

Prognosis:
The median survival time from the time of diagnosis without treatment is 3 months, but with treatment survival of 12-24 months is common. Death is usually due to cerebral edema (brain swelling) or increased cranial pressure."

Not too encouraging.  "Well," I thought, "Everybody knows Wikipedia is not a dependable source of information" .... so I searched and searched and searched for something else, something positive about glioblastoma multiforme. You know what? There is nothing positive about glioblastoma multiforme! So I searched for treatment options and treatment centers. Basically all of the major cancer treatment centers were using the same protocol our doctor had recommended for recurrence ... additional radiation treatments (tomotherapy this time) and an Avastin/Irinotecan chemotherapy combination, along with steroids to keep brain swelling under control. Then I looked at the cure rates for these centers, and I found that there were no cures. Treatment generally extended patient's lives, but no one survived long term.

I continued my search for something a little more positive.  Eventually I found a site called "Young Adults Surviving Glioblastoma", and I thought, "Finally...Something encouraging!" And it was encouraging, at first. The home page was full of pictures of vibrant, smiling, healthy-looking young adults in a variety of settings ... riding bikes, climbing mountains, or surrounded by friends and family. I read their stories and rejoiced in how well they were all doing. And I thought, "That will be Hannah. We can put her on this website someday." Then I clicked on another page on that same site, and my hopes came crashing down. This page was full of obituaries ... for all of those healthy-looking young people I had just been reading about.

When I finally stood up from the computer, my world had been completely rocked. For several days, I was shaken to the core. For the first time, I understood that Hannah had been diagnosed with what is basically a terminal cancer. What does a mom do with this kind of information?

Gradually, I came to the realization that nothing had really changed. Sure, I had more knowledge about what we were dealing with, and it wasn't good, but that didn't change the fact that God was in control. It didn't matter what the research showed; it didn't matter what the cure rates were; it didn't matter that there were so many obituaries on that website ... Hannah's life was securely in God's hands, and He knew the number of days He had planned for her. And no matter what her future might be, my job as her mom was to trust Him ... the One who loved her even more than I did. And when I released her back into His hands, the peace returned.  It wasn't easy, and it wasn't a one-time deal. I had to consciously choose to trust Him, often many times a day, with what was happening in our lives. And He was faithful ... giving a peace that passed all understanding even in the midst of excruciatingly difficult circumstances.  For that I will always be grateful.