Saturday, December 29, 2018

Christmas Break Concerns

This post is #152 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 29, 2008

We enjoyed some good visits with our extended family over Christmas break that year.  Spending time with her cousins, aunts and uncles, and grandparents was one of Hannah's favorite things to do.  When we traveled to northern Arkansas, my parents rented a room at a local hotel so all the cousins could have fun together in the swimming pool.  The younger kids had a great time ... but Hannah didn't feel well enough to swim or even get in the water.  She sat in a chair beside the pool and watched them play for awhile, then was ready to head to the room and go to bed.  This was not like her at all, and our feelings of foreboding continued to rise.

You'll detect none of that concern in my email from a decade ago ...

Just a quick update today....we are at Children's Hospital right now waiting for a platelet infusion. We will return on Wednesday for chemo and platelets and then again on Friday for more platelets. Hannah has felt pretty good for the last few days, and we were able to travel to Mountain Home over the weekend to celebrate Christmas with Jill's family. Jill's brother's family will be coming tomorrow to spend a few days with us. We are looking forward to spending some time with them, as they are missionaries overseas and we've only seen them once over the last 3 1/2 years.

Thank you so much for your continued prayers for our family. We've been so blessed by all of the phone calls, cards, letters, gifts, meals, and emails .... we can never express our gratitude enough. God is so good, all the time!

Jill and Brad

Wednesday, December 26, 2018

A Word from Hannah's Dad ...

This post is #151 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 26, 2008

On the day after Christmas, we headed back to Children's Hospital for an uneventful platelet infusion.  That evening, at his request, I handed the computer to Brad and he wrote our email for that day ...

I wanted to share some thoughts from me during this Christmas season. Jill has been so faithful to share our journey over the last several months...and I wanted to take some time and share what God has placed on my heart today. God's truths have been so real to us, and as I think about the gift He gave us in His Son, Who He is has become so real to us. As we sing the old song, "Go Tell it on the Mountain", I too want to tell how meaningful God's gift has been to us. He truly is the Wonderful Counselor, the Mighty God, the Everlasting Father, and the Prince of Peace. The peace that we have felt, as the Scripture says, passes all understanding. We are so thankful for it. 

God has given us this journey so that we can tell it on the mountain, and we desire as a family to be faithful to that calling. I want to say again how blessed we are to have been raised in Christian families, and have been pointed to the Christ child all our lives. Because of the Christian heritage that was passed to Jill and I, my daughters also know the Christ child and have felt His presence in their lives and know Him as their personal Savior. Their faith in Him has been an example to us. The peace that God has given Hannah during her storm can only come from God. I am so grateful for Jill. She is so special... God gave me the best when He gave me her. She is a wonderful wife, mom and most of all a godly person. I am so blessed. Thank you, Father.

As we look at the new year ahead, we know we have hope in Christ. When life's circumstances don't seem good, we have hope. God is with us. We don't know what 2009 holds for any of us...the economy, a new president, health issues, etc. But we do know that God is in control, and He is good all the time.

Wishing you a merry CHRISTmas and a happy new year!

Brad

Tuesday, December 25, 2018

Grace Like A Fitted Sheet - Christmas 2008

This post is #150 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 25, 2008

Cancer doesn't take a break at Christmas time.  Christmas fell on a Thursday that year, and Hannah needed platelet infusions on Monday, Wednesday, and Friday.  The Hematology/Oncology Clinic at Children's was closed on Wednesday for Christmas Eve, so she actually had to be admitted to the general part of the hospital for a few hours to get her platelets.  When we checked into her room, there was a beautiful plush stuffed walrus on her bed along with a booklet of word games ... Christmas gifts from some nice donor to brighten up the day of a child who had to be admitted to the hospital on Christmas Eve. It took longer than usual to get her platelets since we had to go through the whole admissions process, and we were grateful to be heading home late that afternoon and looking forward to a quiet Christmas Day at home.

I woke up early the next morning and wrote out some of my thoughts in an email.  By this time, there were hundreds, maybe thousands, of people who were reading our emails and praying for our family, and I felt a real kinship with them.  Though I generally tried to be pretty transparent in my emails, I didn't share all my thoughts on that Christmas morning.

Because as I sat there in the pre-dawn hours, I knew.  I knew that this would be our last Christmas together as a family of four.  The cancer was taking Hannah from us bit by bit and there was nothing we could do about it.

Please don't misunderstand.  This was not a crisis of faith.  I knew, and I believed, that God could heal Hannah here on earth if that was His plan.  But it was becoming more and more apparent to me that His plan was for us to walk beside Hannah, holding her hand, as she made her way toward Heaven.  And I recognized that that was actually going to require more faith than simply believing for earthly healing.

My email from a decade ago ...

It is early on Christmas morning, and I have a few things on my heart that I want to share with all of you who have been so faithful to pray for our family over the last several months. No one else is up yet .... the girls no longer wake us up before dawn begging to open their presents...as teenagers, they would much rather sleep in, and open presents whenever they happen to wake up. We no longer have to stay up late on Christmas Eve putting toys together ... the "toys" they want now are high-tech gadgets that they have to open up and figure out how to use themselves ... we're of no help to them in that department. 

We have always lived a few hours away from both sets of the girls' grandparents, so we have rarely spent Christmas Day at home over the years ... we're usually at one or the other grandparent's house, or traveling in between on Christmas Day. Circumstances did not allow us to travel this week (platelet infusions yesterday and tomorrow in Little Rock), so we will be spending all day at home, just the four of us. And while we are praying for Hannah's healing and trusting God that our family of four will spend many more Christmases together; we are fully aware that, in His sovereignty, this could be our last. And that is not only true for our family in our present circumstances, it is true for every family who is reading this email. We do not know what the future holds for any of us ... so please, this year more than ever, enjoy the time with your family, treasure the memories you make, and be sure that you know the One whose birth we celebrate on this day.

Intense fatigue seems to be Hannah's biggest battle right now...we are hoping to travel to Mountain Home and spend a couple of days with my family (my brother, sister-in-law, and niece Julia, who are missionaries in Indonesia, have just come home for a six-month furlough) after her platelet infusion on Friday. We are also hoping to spend some time with Brad's family (his sister and brother-in-law just welcomed their first baby, Faith McKinley Sartor, on Tuesday) next week. Please pray that Hannah will have the stamina to enjoy these visits ... she loves spending time with her extended family. She is due for another chemotherapy treatment next Wednesday (New Years' Eve), and we assume that is the source of the fatigue she is experiencing.

How can we ever thank all of you for all of the prayers, cards, emails, calls, visits, gifts, meals, etc.? Your love and support has carried all of us through this journey, and we will be forever grateful. 

A dear friend once told me that God's grace is like a fitted sheet ... .He gives you just enough to fit your particular mattress. This friend knows the truth of that statement, too, as she and her husband lost their baby girl to meningitis several years ago. God's grace is sufficient ... and He is truly good, all the time.

Wishing you all a blessed Christmas,

Jill

A few pictures from Christmas 2008 ...




Wednesday, December 19, 2018

A Very Unique Christmas Gift

This post is #149 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 19, 2008

As Christmas 2008 approached, we found ourselves in a very surreal position ... Profoundly grateful for the fact that Hannah was still with us, yet fully aware that without a miraculous intervention from God (and we absolutely believed that was possible), this would be our last Christmas with her.  We could already sense her gradually slipping away from us bit by bit.  That resulted in a very unique Christmas gift ... the awareness and appreciation of every moment we had together.  Most families never get that.  I am still thankful for that gift today.

My email from ten years ago today ...

We are sitting in the infusion room at Children's Hospital waiting for Hannah's platelets to be sent up. It always takes awhile to get the bloodwork done, get the results, get the platelets ordered, get them sent up from the blood bank, and finally to infuse them. Hannah hasn't had any apparent side effects from her chemo treatment on Wednesday, and we are thankful for that. She continues to have problems with occasional nausea and mild headaches, but now that we know these problems are not being caused by anything neurological, they are a little easier to deal with. Overall, she feels pretty good most of the time, and for that we are so thankful.

We feel that we have been given a very unique gift during this Christmas season, and that gift is a new appreciation of all of God's many blessings. We've always enjoyed the time we spend with our immediate and extended family during the holidays, but I think many times we have taken each other for granted. This year, more than any other, I believe we will treasure our time together. God's gift of His Son is also more meaningful than ever to us this year, as we ponder the sacrifice He made for our salvation.

We probably will not update again until after Christmas, because we are anticipating a relatively uneventful week ahead medically speaking.  We consider all of you one of God's greatest blessings to our family, and we are so appreciative of the time you spend in prayer for us. God has given us such peace, and He truly is good, all the time!

Jill and Brad

Monday, December 17, 2018

Finally ...

This post is #148 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 17, 2008

It was chemo day at last!  Almost two months after this new chemo was recommended to start, it was finally underway.  We weren't given the go-ahead because Hannah's platelet issues were resolved; no, we were starting in spite of the fact that they were not resolved.  Her doctor just didn't feel we could wait any longer, even though Hannah was at high risk of uncontrolled bleeding.  In an attempt to minimize this possibility as much as possible, she would undergo a platelet transfusion at Children's Hospital every other day.  We fully understood the risk, but at this point we really had no other choice.  As Christmas approached, we were simply grateful to be moving forward with a plan for treatment and the possibility of a cure.

My email from ten years ago today ...

Well, Hannah has finally had her first official dose of chemotherapy. The infusion was uneventful, and she is feeling fine. We are waiting now for a platelet infusion, and then we will be going home. Our oncologist discussed the possible side effects of Avastin with us, one of which is bleeding. He is somewhat concerned about this potential side effect, due to the fact that her platelet counts have been so low (platelets are the clotting mechanism in blood). So...we will be coming in every Monday, Wednesday, and Friday for platelet infusions until her counts rise above 100,000 and stay there for awhile. She will have a chemo infusion once every two weeks for a couple of months, and at that time she will have another scan to determine its effectiveness.

We are so thankful to finally be moving ahead with Hannah's treatment plan. She has had less nausea over the past several days, so she is feeling pretty good right now. We are looking forward to Christmas next week, and the opportunity to spend time with family. 

God truly is good, all the time!
Brad and Jill

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

Saturday, November 24, 2018

Good Medicine

This post is #140 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 24, 2008

We returned to the Hem/Onc clinic at Arkansas Children's Hospital on Monday morning, fully prepared for Hannah to be admitted so she could finally start her new chemotherapy treatments.  But when her bloodwork showed a platelet level of 3,000 (normal is over 150,000), we knew we would not be starting that day.  With a platelet count that low, she was at risk for excessive bleeding ... and excessive bleeding is a potential side effect of Avastin, the chemotherapy drug she would be receiving.  Her red blood counts were also quite low, so instead of chemo, Hannah spent the day receiving transfusions of platelets and blood.

The good news was that her ANC was high enough to get her out of isolation.  We were right at the beginning of Thanksgiving week, so that meant she could spend the week enjoying visits (and hugs) from family and friends, and hopefully start back to school after the holiday.  Instead of an overnight hospital admission for chemo, we were able to head home that afternoon.

We knew it was important for Hannah to start chemotherapy as soon as possible after completing radiation.  But at the same time, we knew what good medicine it would be for her body and spirit to have another week to recover ... a full week with NO appointments or hospital visits ... just family, friends, and home-cooked Thanksgiving food!

My email from ten years ago today ...

Well ... Hannah will not be starting chemotherapy today. Her platelets are at 3,000 and her hemoglobin/hematacrit (red blood counts) are also really low. So, instead of chemo, she's going to get blood and platelets. But here's the good news....her ANC is 761, so she is officially out of isolation. She is happy to be getting blood, because it always makes her feel so much better. She's already been given the platelets, and now she will receive two units of blood, which takes about four hours, so we are settling in for a long afternoon. Thankfully, we can go home when we're done!

Our oncology nurse came by and told us that we will probably start chemo next Monday, if her blood counts will allow it. We just can't start when her counts are so low. And as much as we would like to start, and know that we need to start, we can't help but be relieved that Hannah can just enjoy the rest of Thanksgiving week (we don't have to come back until next Monday) with good food and visits from friends and family! We have so much to be thankful for, even during this difficult season of our lives.

We wish all of you a blessed Thanksgiving...In the midst of all of the cooking, eating, football watching, and visiting with family, please be sure to take some time to thank God for being good, all the time!

Jill and Brad

Tuesday, November 20, 2018

Secret Service

This post is #139 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 20, 2008

We were officially "home" from the hospital, but that didn't mean we got to stay home!  We were still making every-other-day trips back and forth to Little Rock for bloodwork, platelet infusions, and other appointments ... but at least we were sleeping in our own beds every night, and for that we were thankful!

Though Hannah's ANC was rising, she was technically still in isolation due to her low blood counts.  In spite of this, we made the decision to attend one of Bethany's basketball games together as a family.  We sat by ourselves in an empty area of the bleachers.  Several well-wishers came by to speak to Hannah, and that was great, but we didn't allow them to come within more than a few feet of her.  We joked that we were her "secret service agents."  She cheered for her sister, enthusiastically consumed a Frito pie, and enjoyed a few moments of near-normalcy that evening.

Now we just needed her counts to rise high enough for her to start her new chemotherapy treatments.

My email from ten years ago today ...

We went to Children's Hospital today for a bloodwork check, and were excited to find out that Hannah's ANC (immunity level) has risen to 406! This is a terrific jump, considering that it was just 144 on Monday. Her platelets had dropped down to just 8,000, so she did need a platelet infusion today. We also found out when we got there that they had not properly capped her PICC line when we left the hospital on Monday, leaving it subject to infection, so as a precaution they gave her two IV antibiotics (the same ones she received in the hospital) and did some blood cultures to make sure no infection had set in. So we ended up spending most of the day at Children's Hospital. We did have an appointment at CARTI (where she got her radiation treatments) also, and her doctor there really didn't have much to say ... we are not scheduled to return there for another three months. We will return to Children's on Monday, and may start chemotherapy ... it will all depend on her blood counts.

Hannah is feeling much better today...her throat pain is virtually gone, and she is feeling much stronger. So much so, in fact, that the three of us went together to watch Bethany's junior high basketball team play tonight. Her immunity is still quite low, so we were very careful to sit away from the crowd and kept people at a distance. Her friends and teachers were all very happy to see her ... lots of people wanted to hug her, but Brad and I acted as her "secret service" and didn't let anyone get too close. She enjoyed her time out so much, and is really getting excited about the possibility of returning to school soon. You know she's feeling better when she's ready to go back to school!

Thank you so much for your prayers ... please continue to pray that she can start chemotherapy as soon as possible, and that the side effects from this new treatment will be minimal. We have so much to be thankful for ... and God truly is good, all the time!

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Jill and Brad

Saturday, November 17, 2018

No Other Explanation

This post is #138 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 17, 2008

Hannah's Facebook status from ten years ago today ... "Hannah is back from the hospital for the second time in 2 weeks but feeling great!"

The picture above was taken prior to Hannah's diagnosis, and it was one of her favorite selfies.  In fact, it was her Facebook profile picture.  It's one of my favorites, too ... It just seems to capture her sweetness, her trusting nature, her grace and strength, the brightness of her future.  The ravages of treatment had changed her appearance, but had not dimmed her faith. 

My email from a decade ago ...

Hannah's ANC has risen to 144 today, and our oncologist just came by and said that he is sending us home today! Her platelets have dropped off a little bit, so she will get an infusion of platelets and then we will be ready to go. We will come back to Little Rock on Thursday for our radiation follow-up appointment at CARTI and for bloodwork at the oncology clinic, but until then, we should be able to stay home. Her doctor did say that, if her blood counts will allow, he would like to start her new chemo on Monday. He is anxious to start attacking what's left of these tumors, and we are ready for that next step, even though starting something new is always a little bit nerve-wracking.

I wanted to spend a few minutes talking about Hannah in my update today. I don't usually say much about her personally, because she is a very private person and has been somewhat uncomfortable with so much attention focused on her over the past several months. However, after spending 24 hours a day with her for most of the past two weeks, there are some observations I'd really like to make. 

Back in February when all of this began, Brad and I (and even Bethany) all said we would trade places with her in a heartbeat. I have no doubt that any of Hannah's grandparents, and even her aunts and uncles, would do the same thing. We would gladly take this burden from her and bear it for her. But we can't. We can walk beside her providing love, comfort, support, encouragement, etc., but when it comes down to it, we cannot carry this weight for her. 

I am so happy that Brad and I had the privilege of kneeling beside her about ten years ago now, when she asked Jesus Christ to be her Lord and Savior. Because of the decision she made that night, she does not have to carry this burden all alone. And it has been apparent throughout this journey that God has been carrying her...she has faced every medical procedure, every treatment, every needle stick, every new medication, every setback, even the loss of her hair, with a grace and strength far beyond her years. 

I have stood amazed seeing the hand of God at work in my daughter's life...not because she is anything particularly special on her own (although, of course, we think she is incredibly special!) but because she has simply surrendered herself to His will and plan for her life. There is no other explanation for the faith and peace that she has displayed in every circumstance she has faced up to this point. All we can do is give God the praise and glory for what He is doing in her life, and be thankful for every day He gives us with both of our precious girls. 

Thank you for walking through this journey along with us and for supporting us with your faithful prayers....we know that God is good, all the time!

"Come onto Me, all ye that labor and are heavy laden, and I will give you rest. Take My yoke upon you, and learn of Me; for I am meek and lowly in heart; and ye shall find rest unto your souls. For My yoke is easy, and My burden is light." Matthew 11:28-30.

Jill

Friday, November 16, 2018

An Upward Trend

This post is #137 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 16, 2008

So after being told we would be in the hospital a few more days ... Boom, just like that, they were telling us we would be heading home tomorrow.  A welcome disruption to our schedule for once!  As long as Hannah's counts continued their upward trend, we would be busting out of the hospital soon and we couldn't have been more pleased!

Hannah's ANC (immunity level) is up to 120 today! Her oncologist came by this morning and said that we should be heading home tomorrow as long as her counts keep trending upward. Thanks for your prayers ... God is good, all the time! 

Jill and Brad

Thursday, November 15, 2018

Freedom from the Calendar

This post is #136 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 15, 2008

My name is Jill Sullivan ... and I have a calendar problem.  I like calendars.  A lot.  I love filling in all the little boxes with appointments and special dates and activities.  (Not that I want to do all the activities -- as an introvert, I enjoy writing them down much more than actually doing them, ha!)  In fact, I just got a new 2019 planner/calendar today and I'm downright giddy about it.  I even keep my planner/calendars from year to year ... in fact, the picture accompanying today's post is from this week in November 2008.   

If you look at it closely, you can see that it's full of activities -- basketball practice, cheer practice, a deacon's meeting, dog grooming, a haircut, a pep rally, state football playoffs, and my sister-in-law's birthday.  It also includes appointments at CARTI and at Arkansas Children's Hospital.  We didn't keep those two appointments because we were already inpatient at ACH.  And as for those other activities -- it was up to Brad to get Bethany, the dog, and himself to all those places -- because I wasn't going anywhere.  That carefully planned schedule meant nothing to me.  Instead of being consumed with what I had to do, I was able to focus on God and what He was doing in my life and in the life of my daughter.  I found it remarkably freeing, even from within that tiny hospital room.

My email from ten years ago today ...


Well....It looks like we will be in the hospital for a few more days. Last night, Hannah suddenly spiked a fever...she's been staying at about 99 or 100 since we've been here, but they don't consider it significant unless it hits 101. Well, last night she hit that mark, although it quickly came back down with Tylenol and has stayed down ever since. This has set off a new round of blood cultures (the last ones were negative) and more waiting for results. Her oncologist came by and visited with us, and he recommended a new medicine called Neulasta. It is given as an injection, and its purpose is to encourage the bone marrow to produce more white blood cells. He said it is generally used after chemotherapy-induced neutropenia (low white counts), but he is hopeful that it will still be helpful in Hannah's case, which is radiation-induced neutropenia. He says it does not work immediately, but should start producing some results in a few days. So, she got a shot in her arm this afternoon, and we are hopeful that this will be just the nudge that her bone marrow needs. She also received another infusion of platelets today.

You know, I've always been a schedule/calendar type of person. My mother teases me about how many calendars I have hanging up in my house (yes, I even have one in the bathroom)! I keep my weekly schedule of all the family's activities on my kitchen counter AND on my cell phone, and I check them frequently to make sure we're not missing anything. But cancer does not follow a schedule, and there is no place for it on the calendar. 

Our hospital room does not have a calendar, and it's hard to even keep track of what day it is...and if not for the red neon clock over the door that shows the time, it would be hard to keep track of that too...our room overlooks an inner courtyard, and we cannot even see the sky to judge the passage of time. And that's okay....sometimes God has to strip everything else away to get my focus back on Him, and not on my schedule and activities. I've actually come to be thankful for this new freedom from the calendar....realizing that I am not in control of day-to-day (or even hour-by-hour) events, but that God is. And it's even more of a reminder that He is good, all the time....

Jill

Wednesday, November 14, 2018

Middle of the Night Weigh-Ins

This post is #135 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 14, 2008

Hospital life is strange.  You would think that the doctors and nurses want the sick person to rest ... but no ... you would think wrongly.  All through the day -- and all through the night -- there are blood pressure checks, antibiotic infusions, and temperature measurements.  There are even people who come in and clean the room during the night -- they flip on the lights, sweep the floor, bang the trash cans around, etc.  And of course, there are the beeping IV monitors when a little air gets in the line.  But the strangest thing Hannah was asked to do was climb out of bed at some wee hour of the morning (every morning) and stand on a scale so they could check her weight.  I never could figure out why it was necessary to do that while the rest of the world was sleeping.

But it was fine.  Hannah was improving, and that's all that mattered.  Once her bone marrow woke up and started doing its job, we would be heading home!

My email from ten years ago today ...

Just a brief update....Hannah's ANC (immunity level) is up to 84 today, from 24 yesterday! She is still feeling good...a little bit tired from trying to sleep in a hospital between all the blood pressure checks, antibiotic infusions, temperature checks, etc. Would you believe they even make her get out of bed in the middle of the night to weigh herself? When I asked them why they don't just do that in the daytime, they explained that they have to do it after midnight so that the attending physician has all current information in the morning when he/she checks the charts. Anyway, we are doing well, and Hannah's spirits remain good. Please continue to pray for her bone marrow to kick in and to begin to manufacture blood cells on its own. We praise God for the blood of Christ, which enables us to stand before His throne and boldly make our requests known!

He is good, all the time!

Jill and Brad

Tuesday, November 13, 2018

Learning to Wait Patiently

This post is #134 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 13, 2008

We had all thought, rather naively, I suppose, that once this second round of radiation treatments was completed, Hannah would have some time to enjoy just being a typical teenager for awhile before starting chemotherapy treatments.  She was excited at the prospect of having a healthy immune system and no longer being isolated.  She had not attended school since September, when we pulled her out of class to inform her that her cancer had returned, and she was anxious to get back.  After all, if she was to achieve her goal to be the valedictorian of her senior class next year, she couldn't fall too far behind! 

We didn't realize how long it would take her body to recover from the extensive radiation she had undergone.  After all, she had sailed through the treatments with few visible side effects ... but we were beginning to learn that there was a whole host of  invisible side effects with which we now had to contend. 

These invisible side effects were not only keeping Hannah in the hospital and preventing her from going to school, but more importantly, they were delaying the start of her chemotherapy treatments.  And there was nothing we could do about it but learn to wait patiently. 

My email from ten years ago today ...

Hannah had a really good night last night and has had a good day today. Her throat is feeling much better, and she feels better overall, but her ANC (immunity) has dropped down to 24. This is the lowest it's ever been--it was 42 on the second day of her last hospitalization. To give you a frame of reference, her ANC has to be at least 500 for her to be "un-isolated", so this is really low. 

Her red blood counts were low, too, so they gave her three more units of blood and some additional platelets also today. Her blood cultures are negative so far, so that is good news, and it helps that she's feeling better. 

But....it looks like we may be here awhile. They've explained to us that the radiation just really zapped her bone marrow, and it's just taking it awhile to kick in and start producing new blood cells on its own. They tell us that this is normal, and not at all unusual after the type of radiation she had. It's been a little bit discouraging, because we had actually been starting to talk about Hannah starting back to school in the next week or so, but we know we must wait patiently for her body to heal. 

Please join us in praying specifically that her bone marrow will begin to produce healthy blood cells soon, not just so we can get out of the hospital or so she can start back to school, but so we can begin the chemotherapy as soon as possible while those tumors are still feeling the effects of the radiation!

Thank you so much for your prayers....we are so thankful that God is good, all the time!

Jill and Brad

Monday, November 12, 2018

The Magic Number

This post is #133 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 12, 2008

Anyone who has known me for more than five minutes knows that I am a "control enthusiast."  I like my plans to be made in advance, my schedule to fall neatly into place, and my calendar to be without eraser marks.

A cancer diagnosis is a great reminder that none of us are really in control of anything   From one moment to the next, things can change rapidly.  The day after Hannah set up my Facebook page, and just three days after being released from the hospital, we found ourselves on the way back. 

My email from ten years ago today ...

After a really good day yesterday, Hannah woke up this morning with sharper throat pain and a fever which eventually rose to 101 degrees. "101" is the magic number that automatically sends us to the ER at Children's, and after seven hours in the ER, we were admitted and are back in the same little hospital room where we began a little over a week ago. Hannah is tired, but is feeling better tonight than she did this morning, and her fever has not risen back up that high since we've been here.

Her platelets are low again (14,000) so she will be getting platelets tonight, and her ANC (immunity level) is at 78. It was 98 when we left here on Sunday, and I think that decline is the main reason they decided to keep her. They've taken some new blood cultures, so we will see if that shows up anything. I think we'll be here at least 48 hours, waiting for those results. So....we are settling in for the next few days. We did bring a packed bag with us today, knowing this was a possibility, and thanks to our last stay, I knew exactly what to pack this time! Brad has gone back home and will bring Bethany back up tomorrow night for a visit.

Thank you so much for all of your prayers and encouragement. We are thankful to be in such good hands here at Children's Hospital.

God is good, all the time!

Jill and Brad

Sunday, November 11, 2018

"Eww My Mom Has a Facebook!" :)

This post is #132 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.

Ten years ago today, Hannah and I sat down together at our big desktop computer and she helped me set up my Facebook page.  And she also wrote the very first post on my page ...


It still makes me smile today.  :)

Even though Facebook would probably have been a more efficient way to send out our now nearly daily updates, we chose to continue with the emails.  It was important to me to protect Hannah's privacy and dignity as much as possible while still communicating with those who followed her story and Facebook just felt a little too "public" to me.  Facebook was still relatively new at that time (at least it was to me!) and it just didn't seem to be the proper venue for sharing Hannah's story.

We discussed setting up a CaringBridge site, but Hannah was adamant that she did not want that.  She was of the opinion that CaringBridge was for people who were dying, and she did not see herself in that group.  Explaining to her that CaringBridge was definitely NOT just for people who were dying did no good ... she wanted nothing to do with it.  

So the emails continued.  By this time, those emails were going out to literally thousands of people around the world as they were forwarded by those who received them, who then forwarded them to others, who then forwarded them to others ... so I'm not sure it was actually any more private than any other platform ... but it felt that way.

I'm so thankful now that we did these emails.  They were cathartic for me to write, and I believe they chronicled our journey better than any other method would have.  And I'm so thankful for those thousands of people who read them and prayed for us along the way.  

Saturday, November 10, 2018

"An Awesome MRI Report"

This post is #131 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 10, 2008

Hannah's facebook status on this date:  "Hannah is so glad not to be hooked up to an IV and that I got an awesome MRI report!"

"Greatly improved."  The two most beautiful words in the English language ten years ago today.  There were still a lot of questions ... Would Hannah still need additional radiation?  How would this new chemotherapy affect her?  Did the fact that the treatments were working mean that a cure was actually possible?  There was so much we didn't know. 

But for one day, at least, we were given a blessed reprieve. 

My email ...

I just got a call from our oncology nurse at Children's Hospital a few minutes ago, letting us know that there is no need for us to come to Little Rock for Hannah's appointment today. She said that since we'd been there all week last week and they just did blood work yesterday, there was no need to come back today! 

I told her that we had been looking forward to meeting with the doctor to discuss the results of the MRI with him, and she said that he had told her to tell us that it was "greatly improved" from what it had been previously, and that he was very pleased with the results. She said that he had been looking at the two scans side-by-side this morning, and that he kept remarking about how good this new one looks. So, that was great to hear, and we will get to talk with him more specifically about the results next Monday. She also said that we will be starting the chemotherapy as soon as Hannah's blood counts are good enough to begin, and that will just take a little time. 

We will be meeting with our doctor at CARTI on Thursday, and he should be able to tell us if any more radiation is needed (we pray that it is not!) and will have a blood draw at Children's that afternoon to check the status of her blood counts. In the meantime, we are enjoying a quiet day at home ... praising God for all of His many blessings. Isn't it amazing how good He is, all the time?

Jill and Brad

Friday, November 9, 2018

There's No Place Like Home

This post is #130 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 9, 2008

One thing about a week-long stay in the hospital ... It sure makes you appreciate a good night's sleep in your own bed!  The folks at Children's Hospital do their best to accommodate parents who stay in the rooms with their children, and provide either a reasonably comfortable recliner-type chair or a cushioned bench-type area in front of the window (can you say drafty?), but it's a far cry from the comforts of home.  Then there are the continuous interruptions throughout the night as nurses move in and out of the room doing their jobs.  Hannah and I were both mighty pleased to hear that we were finally headed home!

My email from ten years ago today ...

It's Sunday morning, and we just got word that we are going home! Hannah's ANC (immunity level) has still not risen, but it has remained steady at about 100 for the last few days. We will have to return tomorrow for our regular Monday clinic appointment, but at least Hannah and I will be able to sleep in our own beds tonight (without IVs beeping, blood pressure checks, etc.) She feels much better, and her throat pain has really decreased over the last couple of days. Well, we'd better start packing....

God is good, all the time!

Jill

Wednesday, November 7, 2018

Encouraging News!

This post is #129 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 7, 2008

We were greatly encouraged by the news that the radiation had been effective in shrinking and even eliminating some of  the tumors on Hannah's spine and brainstem.  It made all the trips back and forth to Little Rock, the painful throat, the isolation ... even the hair loss .. all worthwhile!  We understood that this put her in a much more favorable position for the new chemotherapy regimen to finish the job.  Before we could move forward, though, we needed her ANC to improve!

My email from ten years ago today ...

Just a quick note...the doctor just came by and told us that they are going to keep us one more day. Her ANC (immunity level) has actually dropped a few points today (from 110 to 100) and they just don't want to send her home until her immunity is a little bit stronger...or at least going up instead of down. Hannah is feeling better today, and is ready to go home...but we are glad they're being cautious. Hopefully my update tomorrow will be from home!

Thanks for your prayers....God is good, all the time!

Jill and Brad

Tuesday, November 6, 2018

God Doesn't Give Us a Road Map

This post is #128 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 6, 2008

I'm so thankful God did not give us a road map ten years ago.  If we had known the destination, I'm not sure we could have kept on walking.  As it was, He gave us just enough grace for each step. 

My email explains ...

Hannah finally had her MRI about 11:30 this morning, and we just spoke to a resident who was with the doctor when he reviewed the results. The resident told us that all of the tumors have decreased in size, and that there are no new tumors! This is the best news we could have received (other than all of the tumors being completely gone, of course!) and we are so thankful. Our oncologist had told us back before starting this latest round of radiation that the goal of the radiation treatments was to shrink the tumors so that the chemotherapy can be maximally effective, and that appears to be exactly what has happened. We were told that the on-call doctor (not our regular oncologist) will be by later this afternoon or probably tomorrow morning to further discuss the results and answer any questions. Hannah continues to improve and has not needed any blood or platelets today, and we've been told that if her immunity numbers increase enough, and if they feel that oral antibiotics will be adequate to finish knocking out the infection, we could be going home tomorrow. So, we have had a day of good news, and we are very thankful! Once again, we thank you so much for your prayers!

We wanted to take a few minutes to share some thoughts with the many people who receive these emails about Hannah. Many of you have given us a form of "praise"... complimenting our faith, telling us you could never "do" what we are "doing", or similar types of comments. While these types of statements are nice to hear, and are definitely an encouragement to us, we would never want to give the impression that we have this whole "faith thing" figured out or that we never have times of struggle or doubt. Our prayer is that, through these emails, you will see that it is not our strength, but the power of God alone, that carries us along on a day-by-day basis. 

Several of the people who receive these emails have gone through unbelievable trials in recent years, and we have witnessed firsthand the power and grace of God in their lives as they walked their own journeys. Now that we are experiencing a trial of our own, we remember how God was faithful to them, and that also gives us confidence to know that He will be faithful to us as well. While we do not know what the future holds, or even what the next day or hour may hold, we can trust Him because He is good. 

When we lived in Fort Smith, we had a wonderful pastor (who reads these emails) who once said that God doesn't give us a road map of our lives. If He did, our eyes would always be on the map, and never on Him. And to tell the truth, I'm really glad we don't have a map, because sometimes it would be hard to keep taking steps if we knew exactly where the map was leading. So, we continue to walk the path, with our eyes on Him, trusting Him to meet our every need, not because we are anything special or some kind of super-Christians, but because we know that He is good, all the time. Thank you for walking this journey with us and for keeping us encouraged every step of the way.

Jill and Brad

Monday, November 5, 2018

Neutropenia

This post is #127 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 5, 2008

When you have a child who has been diagnosed with cancer, you quickly acquire an entirely new vocabulary.  Our current word of the week was "neutropenia."

The dictionary definition of neutropenia is as follows:  The presence of abnormally few neutrophils in the blood, leading to increased susceptibility to infection. It is an undesirable side effect of some cancer treatments.

In other words, an infection that might give someone else the sniffles could kill Hannah because her immunity was so depleted.  Her body simply had no way of fighting it off.  The wonderful staff at Children's Hospital was right on top of things, though, and thankfully, the antibiotics were doing their job.  So well, in fact, that we were once more mentally gearing up for her impending MRI. 

My email from ten years ago today ...

Just a quick update this afternoon, because there's not much news. Hannah's had a good day, and seems to be responding well to the antibiotics. She is going to get another blood transfusion today, because her counts have not risen enough after the unit they gave her yesterday. They're going to give her almost three more units, which should really make a difference for her. Her white count has also risen a little bit, and her platelets have remained level, so that is all good. They still have not completely isolated the bug in her bloodstream, but feel that the antibiotics she is receiving are providing full coverage for whatever it could be. They are almost positive that it is not staph, or anything that serious. The doctor tells us that we will be here at least one more day and her release will depend on what her blood counts do over the next day or so. We are going to be moving to a new room this afternoon, which is great news, because this is a very small room meant for short stays only--it doesn't even have a shower. And I guess Hannah's neutropenia (low immunity) is a blessing in this case, because she has to have a private room! We have also been told that her MRI will be taking place first thing in the morning. Now, "first thing in the morning" is relative when you're talking about hospital time, but hopefully it will be sometime in the early part of the day, and we should be able to review the results with our doctor not long after that.

We are so thankful for Hannah's continued improvement, and are looking forward to getting the MRI behind us tomorrow. Thank you for your prayers and encouragement....God truly is good, all the time!

Jill and Brad

Sunday, November 4, 2018

Room Service

This post is #126 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 4, 2008

While we were still somewhat surprised to be hospitalized, we adjusted quickly to our new surroundings.  This was Hannah's first hospitalization since her brain surgery in February ... which is pretty amazing in and of itself, considering all the treatments she'd been through.  Arkansas Children's Hospital does an amazing job of making their patients as comfortable as possible.  Hannah particularly enjoyed the room service menu ... She could order anything from the menu at pretty much any time of day and they would bring it right to her.  She was especially fond of the chicken fingers and the macaroni and cheese.  Even with her very sore throat from all the radiation, we were thankful she felt well enough to enjoy the room service!  :)

My email from ten years ago today ...

Hannah had a good night's sleep last night and has had a much better (fever-free) day today. She received both blood and platelets today, and the shot of red blood cells has really improved her energy level. Her throat is still sore, but not quite as bad, and she's eaten three good meals today. Yesterday, when we arrived, some blood cultures were taken, and we were told today that one of them is showing positive for some type of bacteria. Apparently, the source of the infection is in her bloodstream, although we don't yet know what the specific type of infection is. We were hoping to get those results this afternoon, but it looks like we will not know until morning. Depending on the type of infection, we may have to stay in the hospital for a few more days to continue the IV antibiotics. We do not know yet when the MRI will be done...there's still a possibility that it will be tomorrow.

We are very thankful that we are here where she is getting excellent care, and that we were able to catch this infection early! Thank you so much for your prayers ... we will keep you posted on our progress!

God is good, all the time!