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

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

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

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

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

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

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

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

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

"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.  

"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

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

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

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

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

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!

Sudden Change of Plans

This post is #125 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 2, 2008

We arrived at Arkansas Children's Hospital that Monday morning all prayed up and psyched up for Hannah's MRI.  We had no idea we would be admitted to the hospital instead.

My email from ten years ago today ...

Well, today didn't turn out at all like we thought it would. We went to Children's Hospital expecting to have an MRI which would tell us how effective Hannah's radiation treatments have been. When we arrived and began the routine blood work and vital sign measurements, we discovered that Hannah had a fever of 101. She had not been feeling well for several days, which we had attributed to the remaining effects of the radiation. Her throat has been terribly sore, and she's had a nearly constant cough. She's been able to eat and drink very little due to her discomfort and congestion. Her symptoms had actually improved somewhat over the last day or so, so we were really quite surprised that she had a fever this morning. We visited with the doctor, who decided to cancel the MRI (since it would be very difficult for her to lie still without coughing for over an hour). He was going to send us home with oral antibiotics, but said we would wait for the blood work results before making a final decision. The blood work showed platelets of only 3,000 (very low) and a white blood count of 0.13 (extremely low). The extremely low white blood count indicates that she has almost no ability to fight off infection.

So ... it was decided that she would receive an infusion of platelets, and that she would be admitted to the hospital for a couple of days for IV antibiotics. They did a chest X-ray to rule out pneumonia, and it was negative. They believe she has bronchitis, and that the antibiotics should knock it out pretty quickly. If all goes well, she will probably have her MRI on Wednesday and then we should be released. Hannah and I are both actually relieved to be in the hospital, where we know she can get the medicine she needs to get well. I'm also glad to have the MRI postponed until she's feeling better, because it is a rather nerve-wracking procedure, even when you're feeling your best!

We know there were many, many prayers lifted today on Hannah's behalf, and we are so thankful. It is very humbling to know that so many people take time out of their busy days to bring our daughter before the Lord. Today's events remind us that we are not in control of Hannah's situation ... not in the least ... but God is! And it is so comforting to know that He is good, all the time!

Jill and Brad

P.S. Because Hannah's immunity is so low, she is not able to have visitors during her stay in the hospital. We have to be very careful to protect her from any additional bugs!