Saturday, December 15, 2018

Unexpected MRI

This post is #147 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.



December 15, 2008

For several days, the weatherman had been predicting a nasty ice storm on Monday.  In Arkansas, that means everyone runs to the store to stock up on bread and milk in case they're stuck at home for a few days.  We all charge up our electronics and make sure we have dry firewood, as electric power will most likely be lost.  Kids rejoice at the prospect of school cancellations and teachers look forward to a few days off in their pajama pants.

But today was the day Hannah would finally be starting her long-postponed chemotherapy treatments, and a little ice was not going to keep us away!  We were anxious to find out when her new MRI would be scheduled so we could get some answers to the increased nausea and headaches she was experiencing.  Our appointment at Children's Hospital was at 9:45 that morning, and we were hopeful for an uneventful chemo infusion so we could be back home in front of the fireplace before the bad weather really set in. 

But when we arrived, things took an unexpected turn.  I sent out a quick email from the waiting room that morning.

We are sitting in the waiting room at Arkansas Children's Hospital waiting for our appointment, and our specialty nurse just came out and told us that there was an MRI cancellation today ... so, Hannah will be getting her MRI at 1:00 today. I'm not sure what this does to our plan to start chemo today ... we will keep you all posted as the day unfolds. Please join us in praying for a good scan ... 
God is good, all the time!
Jill and Brad

Gasp!  As glad as I was to be getting this MRI done, the suddenness of it knocked the breath out of me for a bit.  We usually had some time to psych ourselves up for these things ... and now we were about to have one in just a few hours!   We were fully aware that this MRI could indicate a potential death sentence for Hannah ... or an undetermined number of weeks, months, or maybe years of extended life.

My email from 5:00 that evening details the results of the MRI.  We were greatly relieved by the overall good report, even though we still didn't really have an answer for the increased symptoms she was experiencing.  We were also pleased that Hannah's chemo treatments would finally be starting that week regardless of her platelet status.  We were so ready to move forward on that.

What we didn't know at the time (and I'm glad we didn't) was the significance of the "very faint stuff" in the area of the original tumor ...

After a very long day, we were finally able to meet with our oncologist a few minutes ago and he showed us today's brain scan compared to the one done in September. He was really pleased with how it looked. The two large tumors in the brainstem area are much smaller and less bright than they were. There was some very faint stuff that showed up in the area of the original tumor, in the area of her brain that could not be re-radiated. He says the chemo should take care of that. There is no sign of brain swelling, so that is really good, too. We do not have the spine scan results yet, and I'm guessing we won't see those until Wednesday, when we will be returning. 

They are about to start giving her platelets now (they were at 30,000) and are not going to do the Avastin (chemo) until Wednesday. He says that while we are doing the Avastin, she will probably need to have platelet transfusions three times a week to prevent any possible bleeding, which is a potential side effect of Avastin. So ... all in all, good MRI results so far and we will be starting chemo on Wednesday. Thank you so much for your prayers for us today ... please pray that the Avastin will cause these tumors to shrivel up and disappear! It looks as though we will be traveling home after dark tonight in the midst of a sleet and ice storm, so please pray for traveling safety after this long day as well.

We are very thankful for a good report today, and so relieved to have another MRI behind us. Thank you so much for walking this journey with us and holding us up in your prayers. God is good, all the time!

Jill and Brad

Tuesday, December 11, 2018

Rising Concerns

This post is #146 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.


After our appointment on Monday, we expected that Hannah would continue with school since she was still not able to start chemo.  Instead, the ongoing side effects from the radiation began to unexpectedly intensify.  The morning nausea and near-constant headaches were increasing, preventing her from attending school.  This exacerbation caused us to question whether her issues were indeed still due to side effects of the radiation treatments ... or something else.  We contacted her oncologist at Children's and let him know what was going on, and he immediately put some steps into motion.

He recommended that we visit her local ophthalmologist so he could check her for any signs of increasing intracranial pressure.  This was the same doctor who recommended the MRI back in February, and who broke the news to us about the presence of the tumor.  He got us in immediately, examined her thoroughly, and gave us the welcome news that there didn't seem to be any signs of building pressure in her brain.

Our oncologist also recommended a new MRI ... always a nerve-wracking prospect ... but certainly warranted, considering her increasing issues.  We were grateful that he was on top of things, and hopeful that the MRI would be scheduled soon. 

My email from a decade ago outlines these concerns, and includes a word of thanks to all those who donate blood and platelets.  That gratitude is just as strong today.  If not for the blood and platelet donations of a multitude of strangers, we would not have had Hannah with us as long as we did!

Hannah's had a little bit of a rough week this week. She's been struggling with morning nausea every day, and has also been having some mild headaches. We feel that the nausea may still be due to some of the side effects of the radiation treatments, although we are getting some things checked out. We went to see her ophthalmologist yesterday, on her oncologist's recommendation, so he could check her for any signs of increased intracranial pressure. He did not find any indication of increased pressure, so that was good news. Our oncologist has also recommended a new MRI scan, and we are waiting to hear from them as to when it will be scheduled. We will be going to Children's Hospital tomorrow for bloodwork and a probable platelet infusion. Maybe we will find out more at that time. We are thankful that once she gets through the morning, she usually feels better in the afternoon and evening.

I do want to say a word of thanks to all those of you out there who donate blood and platelets. We added it up the other day, and we figure that Hannah has had about twelve units of blood and probably about twenty units of platelets. Several people have asked us about donating blood or platelets specifically for Hannah. Children's Hospital actually discourages people from donating to specific patients, but rather just to donate in general because there are so many people who need blood. So to all of you who give of your time to donate blood or platelets, thank you! And please continue, not just for Hannah, but for all the cancer patients who so desperately need it!

God is good, all the time!

This verse sums it all up..."We have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted but not abandoned; struck down but not destroyed. We always carry in our body the death of Jesus, so that the life of Jesus may also be revealed in our body." II Corinthians 4:7-10

Jill and Brad

Sunday, December 9, 2018

More Delays

This post is #145 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.


December 9, 2008

As much as we were enjoying the relative normalcy of both girls being back in school leading up to Christmas break, we were really beginning to feel the urgency of starting chemotherapy before too much time elapsed following radiation.  The initial plan had been to start her new chemo treatments at the beginning of November, and here we were approaching the middle of December and she had yet to have her first infusion.

It sounds a little strange to say we had high hopes of starting her treatments when we went to our appointment at Children's that Monday ... I mean, who wants their child to take chemotherapy?   But at the time, we believed Hannah's best chance of beating this cancer was through these infusions.  And surely, after all these delays, this would be the week she would finally be able to start.

You can detect a little of my disappointment in my email from ten years ago today ...

No chemotherapy again today .... instead we're getting a unit of platelets and two units of blood again. Her counts were higher than they've been (platelets were at 34,000 today ... they need to be at least 50,000 to start chemo) and the doctor said that they will probably give her more platelets later this week and will start at least one of the chemo drugs next Monday regardless. 

He explained that the radiation is still working in her body, which is holding down her blood production but should also be preventing any tumor growth. She has been having some mild headaches pretty much on a daily basis, and has had lots of morning nausea over the last few weeks, and he is going to start her back on a low dose of steroids to try to help with this. She is planning on going back to school again tomorrow and should be able to go most of the week, except for when we have to return to Children's for more platelets.

Thank you again for your prayers ... God continues to be with us every step of this journey. He truly is good, all the time!

Jill and Brad

2 Corinthians 4:17 - For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory...

Thursday, December 6, 2018

Empty Me

This post is #144 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.


Early December 2008

Hannah had gotten her driver's license about four months before she was diagnosed with cancer.  She would probably agree with me when I say that she was not the world's greatest driver.  In fact, I'm not sure her driver's ed teacher really wanted to give her a passing grade, but he did!  Knowing what we know now, it could be that her rather poor driving skills were an early manifestation of the tumor growing in her brain.  Thankfully, she never had an accident or even a fender bender, but she did make us nervous sometimes!

Her brain cancer diagnosis did not legally preclude her from driving, but we all agreed it was best that she not drive during her treatments.  So I ended up driving her around a lot during that year, including those days she returned to school in early December of 2008.

One day as I drove her home from school, one of her favorite songs came on K-LOVE radio -- "Empty Me" by American Idol contestant Chris Sligh.  And Hannah, who only rarely shared the deepest parts of her heart with us over the course of her cancer journey, told me that the loss of her hair had helped her empty herself of her pride before God and she was thankful for that.

What a kid.  I'm still learning from her. 

You can hear the song and see the lyrics by clicking the link below. (If you receive these updates via email, you may have to click through to the blog to hear it.)


Tuesday, December 4, 2018

A Hero In My Eyes

This post is #143 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.

December 4, 2008

In a previous post, I described the moment Hannah first became my hero.  They day she returned to school for the first time since her cancer recurrence in September was the second.

I remember dropping her off that first day she went back and thinking how brave she was to walk into that school building after being out for so long ... wearing a wig, her face swollen from steroids, not knowing how people would react to her.  I wanted to walk in with her, holding her hand, like I did the first day of kindergarten. But what high school junior wants her mom to walk into school with her? And besides, I knew that her dad, the principal, was in there waiting for her. I remember driving away with a heavy heart, wondering if attendance at school really mattered, as her prognosis did not give much hope for graduation.

But she was determined to go, and for the few days she attended, she did well. The first day she went back, her social studies class was reviewing for a test.  She took the test the next day, and made a 100 percent, even though she had not been there for a single day of classroom instruction.  I've looked through some of the notes she took and work she did during those days, and it is heartbreaking to see her once beautiful handwriting appear so shaky and unsteady.  She had always doodled in class, usually making elaborate designs and symmetrical patterns.  She did some doodling during those days in class too, but it is messy and uneven.

I wonder ... What was she really experiencing at that time?  How does it feel to know that you have tumors growing inside your brain and spinal cord?  She really never talked much about what she was feeling, physically or emotionally.  She was always very private ... never one to share too much.  As time passed and her motor skills deteriorated, gradually stealing her ability to walk, she told me one day, "I don't like being this way."  That was it ... that was her one complaint during that entire year of cancer.

How did she do it? No one could do what she did in human strength alone. The only answer is her faith in God. She knew beyond the shadow of a doubt that this was all part of His plan for her, and she accepted it without question.  And that makes her a hero in my eyes.

My email from ten years ago today ...

Just a quick update to let everyone know that Hannah has been going to school this week...she went for three hours Tuesday and almost a full day yesterday. She's up and getting ready this morning to go back today. She has done really well, and it seems not to have tired her out too much. I think we've all enjoyed being involved in some normal activities this week! 

We will go to Hot Springs this afternoon for bloodwork, and will go to Little Rock for a platelet infusion tomorrow if one is needed. We hope to be on track to start chemo on Monday. Thank you so much for your continued prayers...I will update again on Monday! 

God is good, all the time!
Jill and Brad

Monday, December 3, 2018

Ready for Battle

This post is #142 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.

December 1, 2008

Even as we enjoyed our family time over the Thanksgiving holiday, we found ourselves looking ahead to Monday when Hannah would finally get to start her new chemotherapy treatments.   The reprieve from treatments had been wonderful, and we were so glad Hannah was finally feeling more like herself, but we were really beginning to feel the urgency to get back to fighting this cancer.  Every day that passed without treatment felt like an opportunity for the cancer to gain a deeper foothold in her brain and spine.

So we headed to Arkansas Children's Hospital on Monday morning with an overnight bag in case we needed to stay ... our shoulders back, ready to return to battle.

The news we received when we got her bloodwork results back was disappointing to us ... but not to Hannah.  If she didn't have to get chemo, and she was no longer in isolation, she could go to school!  We couldn't help but be happy for her, even as our disquiet with all the delays grew.

My email from ten years ago today ...

Well ... no chemotherapy today. Hannah's red blood counts and platelets are still very low, so she's going to get two more units of blood and a unit of platelets instead. Her platelets have to be between 50,000-75,000 before they will start chemo, and they are at 7,000 today. Her red counts are not as low as they were last week, but she could tell by the way she was feeling that they were starting to get low again. We will have bloodwork done again on Wednesday or Thursday this week to see where we stand. 

The good news is that her ANC (immunity level) is now up to 1,296....and she is hoping to go to school tomorrow! This is a huge step, because she hasn't been to school since September! Getting blood today should really boost her energy level, and she is really looking forward to starting back.

Please be in prayer that her blood cell and platelet production will begin to kick in, and that she will have the stamina to get back into the swing of school. Thank you for your continued prayers for our family....God is good, all the time!

Jill and Brad

Friday, November 30, 2018

Christmas Crooners

This post is #141 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.


November 30, 2008

At this point in time, Hannah had completed her second round of radiation treatments and we were still waiting for her bone marrow to rebound enough to start her new chemotherapy treatment. Her blood counts were still extremely low, and she was getting weekly blood transfusions, and almost daily platelet infusions. The chemo treatments were our last hope, medically speaking, for Hannah's survival.  She was feeling pretty good at Thanksgiving time ... the "ground-up glass" feeling in her throat from the radiation treatments had finally diminished, and her sense of taste was just beginning to return, so she really enjoyed Thanksgiving dinner.

After Thanksgiving, we set up our family Christmas tree to the crooning of Andy Williams, Bing Crosby, Nat King Cole, Frank Sinatra, and Burl Ives.  Hannah always insisted that we play the old Christmas tunes for this event, so of course we did.  She played a much less active role in the tree decorating that year ... mostly observing and directing the action from our recliner.

As we stepped through these holiday traditions Brad and I were fully cognizant that this could be the last time we did these things together as a family of four.  My emails gave no indication of what an excruciatingly difficult time this was for us as Hannah's parents.  We were beginning to see daily indications that she was already leaving us, little by little.  They were small things ... nothing that a casual observer would see ... nothing we could even specifically identify ... but the signs were there nonetheless.  All we could do was savor every moment of our time together as a family, lean in, and trust God for the future.

My email from ten years ago today ...

Just a quick update to let you know that we had a wonderful Thanksgiving surrounded by family and good food! All of Hannah's grandparents were able to come, along with many of her aunts, uncles and cousins. Hannah has felt well all week, with the exception of some queasiness in the mornings, which she attributes to the yucky taste still remaining in her mouth from the radiation treatments. She was able to enjoy all of the visitors and the food, so we were very thankful!

Tomorrow we return to Children's Hospital for bloodwork, and possibly to start chemotherapy, depending on what her blood counts look like. Judging by how well she's been feeling, I am guessing that there's a good chance she'll get to start her chemo tomorrow. We will go prepared to spend the night, just in case she has an adverse reaction to the chemo, but they have told us that we should be able to go home after a period of observation. I will bring Hannah's laptop with us to the hospital tomorrow, and will probably send out an update from there.

One of the things we are the most thankful for during this Thanksgiving season is you, the readers of these updates who are so faithful to pray for Hannah and our family. Words can never express how grateful we are to all of you for keeping us lifted up before the Father on a regular basis. Thank you.

God is good, all the time!
Jill and Brad

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