A Bruising of a Blessing

This post is #173 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.

Photo credit: ThePitcher on VisualHunt.com / CC BY-NC-SA

February 10, 2008

After hearing the news that we may just have six to eight weeks left with Hannah, Brad and I sat down together and made some decisions.  One was that he would take a leave of absence from his job as her high school principal.  Part of this was just practicality ... as Hannah was able to do less and less for herself, he would be needed to help with her care.  She was basically the same height and weight as me and while we had been managing pretty well so far, I knew I wasn't going to be able to lift her anymore when she could no longer "help" me.

But really, he took the leave of absence in order to spend as much time with Hannah as he could.  And for that same reason, we also made the decision to pull Bethany out of school.  She wasn't learning a thing anyway ... She couldn't focus on school with all that was happening at home.  If she missed six or eight weeks of school and had to repeat a grade, so be it.  We wanted her to have every possible moment she could with her big sister.

So from that point until Hannah went to Heaven, it was the four of us together at home.  While the whole situation was heartbreaking, we made some sweet memories together as a family.

The cancer ravaging her brain had made Hannah very childlike.  Most of her communication at this point was limited to questions, which she would ask over and over.  Her favorite question was, "What time is it?"  And no matter how we answered her -- 10:00, noon, 7:00 -- she would say, "No, it's not."  She didn't know what time it was, but she was sure we were wrong whatever our response was.  She was probably confused because she was sleeping so much.  We finally started responding to her question by asking her what time she thought it was ... and whatever she said, that's what time it was.

Her confusion about time also caused her to want to eat at all hours of the day and night.  Whenever she woke up, it was time to eat ... even if it was the middle of the night.  And you know what?  We didn't mind.  She enjoyed her food, and if she said she was hungry, we brought her whatever she wanted.

As time went by, her favorite food choices narrowed down to three things ... Special K with Red Berries, oranges, and Michelina's frozen fettuccine microwave meals.  She might eat a bowl of Special K at 2:00 in the morning, and by the time I got her bowl put in the dishwasher, she would be ready for some fettuccine ... completely forgetting she had just eaten cereal.  No problem.  Two minutes in the microwave, and her fettuccine was ready.  I wasn't going to deny her her pasta.

One area in which we had to be pretty firm with her was in regard to showering.  We didn't make her shower often because it was difficult for her, but you can only go so long without showering before it becomes necessary.  I would get in the shower with her and help her stand and soap up, and she tolerated it pretty well.  But when we would suggest that it might be time to take a shower, she would insist that she had just had one.  I don't think she was lying or being insolent ... She honestly believed she had just had one!  She had such a skewed sense of time, in her mind her last shower had probably just been a few minutes ago.

I've always wondered how parents of children who have special needs do what they do each day.  This experience with Hannah gave me just a tiny glimpse into their world, and I believe I now understand a bit better.  If Hannah's cancer progression had stopped there, and the doctors told us that she would live a normal life span, but with these limitations, I would have embraced that lifestyle without hesitation, just to have her here with us.  I would have cared for her bathroom needs, fed her, lifted her, answered her repetitive questions ... because I loved her just as much in that condition as I had loved her for the seventeen years leading up to that time.

As hard as those days were to live through, I was grateful God allowed the four of us the opportunity to experience them together.  It was a "bruising of a blessing," as Joni Eareckson Tada likes to say. 

Caring for our daughter and sister during those final weeks of her life was a God-given privilege and honor. 

An Unforgettable Gift of Kindness

This post is #172 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 9, 2009

When we arrived at the Hem/Onc Clinic on this date ten years ago, my heart sank.  The usual routine upon arrival at the clinic was to spend some time in the waiting room, then go to triage' where weight, blood pressure, etc., are checked, then come back out to the waiting room and wait some more for either an exam room to open up, or a bed to become available if the patient is there for an infusion of some sort.

On that particular day, the waiting room was packed and every bed in the infusion room was full. It was obvious we had a long wait in front of us. Hannah was completely exhausted just from the ride to Little Rock that morning, and could literally barely sit up in her wheelchair.  The brightness of the waiting room assaulting her dilated pupils made things even more uncomfortable for her.  I didn't know how we were possibly going to make it through the morning.

One of the nurses noticed Hannah's struggle, and called us back before it was our turn.  She led us to a conference room which contained one of those pull-out sleep chairs that you find in hospital rooms, and fixed it so Hannah could lay on it while we were waiting for an available bed so she could get her platelets.  She turned on a lamp and then flipped off the light switch as she closed the door behind her, giving Hannah the gift of sweet rest in privacy.

The remembrance of that gift brings tears to my eyes even today.  Maybe they do that for every child who's in Hannah's situation ... but I know those nurses had a special fondness for Hannah.  And for us that day, it felt like a special, secret honor.  A parent never forgets kindnesses given to their children, and this particular gift of kindness will live in my memory forever.

We did finally get her platelet infusion that day, and while I sat with her, Brad took advantage of the opportunity to speak to her primary oncologist alone.  Every time her doctor spoke with us, Hannah was present and listening, so he was always very careful with his words.  It was time to have a conversation without that filter.  Through tears, he shared with Brad that Hannah might have just 6 to 8 weeks to live, and that it might be time to consider hospice care.  He told Brad that Hannah was just the kind of girl he would have chosen for his son to marry.  I believe his heart was truly broken over what was happening to her.

My email from a decade ago reveals none of this ...

We are at Children's Hospital, waiting for platelets again....her platelets were 37,000 today, so she definitely needs some. Her ANC (immunity level) has risen up to 873, which is an improvement from last week, and most of her other counts are pretty good.

Hannah really seems to have lost some ground over the last several weeks. Because of the location of her tumors, she is sleepy all the time, and sleeps about 20 hours out of every day. The tumors are also affecting some of the cranial nerves, causing her eyelids to droop and making it difficult for her to keep her eyes open sometimes. Her near vision is very poor, but her distance vision is still good enough to be able to watch TV. She is frequently confused now...forgetting things that just happened a few minutes ago and asking the same questions over and over....although she can still solve the puzzles on Wheel of Fortune before the rest of us can! 

She is physically very weak, needing assistance for almost everything now. Her appetite is good, and she really enjoys eating...and even still likes to go out to eat when her counts are high enough. Our doctor tells us that some of these side effects may be related to the chemotherapy and steroids she's taking, but some of them are probably also related to the cancer. It's very difficult to identify what is due to medication and what is due to the disease. Seeing these changes take place in her is by far the most difficult part of this journey.

She will have an MRI next Monday, the 16th, which will tell us a lot about what the future may hold. Of course, we know that it is God who holds the future, and who holds her in His hands...and He alone knows what is to come. We will continue to trust in Him to do what is best for Hannah, and in the meantime, we will enjoy every day as it comes. We are so thankful that she is in no pain, she has no nausea, and she has no seizure activity, which is so common in brain cancer patients. We continue to boldly ask God for healing, while acknowledging that He is sovereign in these matters.

We are also thankful that Bethany has completely recovered from being sick last week, and is back to feeling 100%. She will be playing basketball tonight, in the first night of the junior high district tournament, and is really looking forward to it. She LOVES basketball, and it's been a great distraction for her with all that's been going on in our family lately. We want to say a big THANK YOU to all of her teachers and coaches, who have really been a wonderful support system for her over the last several months. You all have really made a difference in her life, and we are grateful!

As always, we thank you for your faithful prayers for our family...God truly is good, all the time!

Jill and Brad

In the Middle of the Storm

This post is #171 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 5, 2009

My email from ten years ago stands on its own today ...

I don't have anything new to share as far as an update today...I just want to share some things that have been on my heart lately.

Every day, we hear from at least one person (usually several people) about how much Hannah's story has touched, or even changed, their life. It is such an incredible blessing to us to hear that, and I want to take a minute to explain why. The night before Hannah's brain surgery last February, she shared a story with us that she had never told us before. Many of you have heard this story; most of you probably have not, so with her permission I want to share it with you now. 

A little less than a year before Hannah got sick, she participated in a special youth retreat event with our church called Disciple Now.  A special speaker was brought in for the weekend, and one evening he talked to the kids about how God sometimes uses storms in our lives to mature us, and to give us an opportunity to demonstrate the love of Christ to those around us. As he talked, she began to realize that she had never experienced a real storm in her life, and when she prayed that night, she asked God to send her a storm, so that through it, she could glorify God and bring others to Him. 

She is in the middle of that storm right now, and you have been a part of it by reading these emails and following her story...so if you find that your life has changed, or that you are walking closer with the Lord as a result of what is happening in her life...you are an answer to her prayer. If you are not a Christian, but if Hannah's story has caused you to consider the claims of Christ, maybe for the first time, you are an answer to her prayer. I don't think I can say it any more simply than that. Knowing that Hannah prayed this prayer has been an enormous comfort to us, and it's been amazing to see the many ways that God has answered it.

I close by sharing with you the lyrics of a song by Casting Crowns off of their Lifesong album...a song that has had special meaning to us over this past year during Hannah's battle with brain cancer:

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen" and it's still raining.

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hand and praise the God who gives
And takes away.

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm.

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find you?

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

I will praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm.

God is good all the time. ~Jill

Weary

This post is #170 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 4, 2009

After a long night, we were released from the hospital, came home, and went straight to bed.  I'm not sure why they decided to try the lung therapies with Hannah during the overnight hours, but they did.  Just as we were getting ready to go to sleep for the night, the respiratory folks came in with a high frequency chest wall oscillation vest for us to try.  This is a device used by children and adults who have cystic fibrosis and it works by vibrating the chest at a high frequency in an effort to loosen and thin mucus.

Hannah was so weak that just sitting up required great effort.  We got her seated upright on the bed, the vest was strapped on, and the vibrations began.  The therapist made sure everything was working okay and stepped out of the room, explaining that she would be back in five minutes to allow Hannah to cough.  She did okay with that first round, although it did not result in a productive cough.  The second round would be longer in hopes of producing a better cough, and once again the therapist left the room.

Within just a couple of minutes, Hannah really began to struggle.  The pounding on her chest was more than her weakened body could bear.  I positioned myself behind her and wrapped my arms around her to help her stay upright and to try to absorb some of the blows with my own body.  We made it for several more minutes like that, but she just couldn't do it.  She became very nauseous and began pleading to stop.  I punched the call button and that was the end of the cystic fibrosis vest.  We were both incredibly relieved when it was removed.

Since the vest was a fail, the next step was a CPAP machine.  They were concerned about keeping her oxygen levels up while she was sleeping, so I suppose the CPAP was a logical choice, but she really struggled with that, too.  She was very uncomfortable wearing it, and it actually seemed to frighten her a bit.  She tried ... she really tried ... to wear it, wrestling with it throughout the night.  She was so miserable, I finally just took it off of her.  I had been watching her oxygen sats with it on, and I watched them with it off, and there was no difference ... well within the normal range either way.  This is a girl who had never complained in spite of everything that had been thrown at her over the past year.  If she didn't want to wear a vest or a mask ... I wasn't going to make her.

After that sleepless night, we spent the morning in the Pulmonary Lab having multiple tests done.  Oh, it was hard to watch as she dutifully attempted everything they asked her to do.  She was so weak and fatigued, yet she was polite and cooperative with the nurses and therapists.  She tried to answer their questions the best she could, but words were failing her.  They finally let us go, sending us home with an incentive spirometer to exercise her lungs. 

During this hospital experience, it hit me full force how weary Hannah was becoming.  She had been so strong for so long, and her body (and mind) were finally wearing down.  It was clear that she was in the process of dying, and as much as I didn't want her to go, I also didn't want to push her beyond her limits. 

I really just wanted to take her home and let her live the time she had left without chemotherapy treatments, platelet infusions, spirometers, and isolation masks.  It was time for her to rest.

My email from a decade ago ...

There's no place like home, there's no place like home....At least that's how Hannah and I are feeling this afternoon! We were home by 12:45, and we both headed to bed. She is still snoozing, but I'm up and feeling a little more like myself after a two hour nap. The lung therapies they tried on Hannah kept us awake most of the night, and neither one was particularly helpful. She really could not tolerate the vest which squeezed (actually shook) her lungs (this is the type of vest used for kids with cystic fibrosis) and she did not like the CPAP machine at all. The vest was supposed to help her produce some productive coughing, and it really didn't...but her congestion does seem to have gotten much better on its own. The CPAP machine was supposed to keep her oxygen levels up overnight, but really wasn't necessary, because the monitor they put on her indicated that her oxygen levels were consistently strong all night, whether she was wearing the mask or not. So, all in all, good news, I guess, just made for a long night!

At 9:00 this morning, they came in and told us that we were heading down to the Pulmonary Lab for some more tests. So, we headed down there, and they did some breathing tests to determine Hannah's lung capacity, etc. It really wore her out, but she was a good sport, and tried to do everything asked of her. We did not get any results before we left, but I suppose we will hear more when we return to the clinic. Her bloodwork was much better today...good red counts and platelets at 66,000, so there was no need to wait for any blood products, and we got to go home pretty early. We'll return to the clinic on Friday for our next bloodwork, and platelets if needed.

Bethany seems to be feeling better, so that's good....thank you so much for your prayers for her, as well as the rest of us. God continues to remain faithful, walking with us every step of this journey, just as you are. We are eternally grateful. He is good, all the time!

Jill and Brad

Unwavering Faith

This post is #169 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 3, 2009

It may sound strange to say that even though Hannah had been battling brain cancer for nearly a year, she really hadn't been "sick" very much.  Yes, she dealt with ongoing headaches, nausea, low platelets, and fatigue, but for the most part, she had been able to cope with these things and still live her life.  Her only hospitalizations, other than her initial surgery, had been for fevers that spiked up when she was neutropenic.  And during those hospitalizations, we would watch movies or TV shows together (one time we watched the entire Facts of Life series), and she took advantage of the opportunity to order chicken strips and macaroni & cheese from the ACH room service menu any time she wanted them.  Sure, we would rather be home, but we always managed to have some fun together during our hospital stays.

This hospitalization was different.  This time she was sick.  Her lungs were full, and she was too weak to cough productively.  She was severely anemic, and too fatigued to do much of anything but sleep.  Blood products were transfused in an effort to alleviate the anemia and fatigue, and her doctors wanted to try some treatments to see if they could help improve her lung function.  Other than that, there wasn't much they could do for her. 

In spite of everything, her faith did not waver, and she continued to greet her doctors and nurses with a smile no matter how bad she felt.  She still didn't complain or question why this was happening to her.  I was so proud of my girl.

My email from ten years ago today ...

Well, we are spending another night in the hospital. Hannah has had a few albuterol breathing treatments today, and they are going to do a couple of different kinds of treatments tonight. One involves wearing a vest which will squeeze her lungs, and the other is a CPAP type breathing machine that she will use overnight. She received two units of blood today and a unit of platelets ... her red blood counts had dropped pretty dramatically just since yesterday ... apparently a side effect of the chemo. She has slept away most of our stay this time, so hopefully this infusion of blood will help with her energy level. They tell us we will probably go home sometime tomorrow.

Bethany has developed a pretty severe cold...a strep test was negative, but the doctor put her on an antibiotic just to make sure, since Hannah's immunity is so low. Please pray that she recovers quickly and that none of the rest of us get it, especially Hannah. Your prayers continue to carry us along day by day, and we thank you for that.

"The goodness of God endureth continually." Psalm 52:1

Jill and Brad

Mobility Issues

This post is #168 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 2, 2009

We were now using a wheelchair exclusively for our trips to Children's Hospital, and had become pretty well resigned to its use away from home.  But as time went on, Hannah was becoming less and less able to walk independently, even in our home.  She began to depend upon one of us to support her as she walked from the living room to her bedroom, and needed assistance to stand from a seated position.  In an effort to allow her more independence, we ordered a walker from medical supply, thinking she could use that to get around the house without always having to wait on one of us to help her.

She used that thing one time to walk from her bedroom to the living room, then disdainfully pushed it aside and said, "This makes me feel like an 'oldie'."  So we put it down in the basement and never brought it out again.  After all, we really didn't mind helping her.  I especially enjoyed helping her out of her recliner ... I would lean forward, we would wrap our arms around each other, and together, we would stand up.  Then we would hold each other just a bit longer to make sure she was steady on her feet before I would move around to her side.  Her hair was growing in, soft and fine like baby's hair, and I loved nuzzling my nose into her neck as I lifted her.  Hannah had never been a hugger growing up ... she wasn't even much of a cuddler as a baby ... so those moments of physical closeness were treasured.

Her decreased mobility was beginning to cause her some new issues, though.  My email from a decade ago explains ...

Today is our regular clinic day at Children's Hospital. Hannah's platelets were just 17,000 today, so we have already gotten a platelet infusion, and we are now waiting for her chemo treatment. She still has her cough, so the doctor listened to her lungs again today, and then ordered a chest x-ray. The x-ray showed no pneumonia (Thank you, Lord!), just a lot of "stuff' in her bronchial tubes. He feels that this is due to her not moving around much and the fact that her cough reflex is very weak right now.

So...she will be admitted to the hospital for some pulmonary tests and some experimental therapies to see what we can do to improve her lung function. He said that we should just be in the hospital for a day or two. We're thankful that they are being proactive and getting this taken care of before it turns into something more serious. Her immunity has risen somewhat (380), but she is still below the isolation cut-off of 500. We're hoping that getting her lungs cleared up will help her feel better, too, and give her some more energy.

We are so thankful for all of you...those who read these emails and are so faithful to lift us up in prayer. You continually keep us encouraged and remind us that God is good, all the time!

Therefore, having been justified by faith,

we have peace with God

through our Lord Jesus Christ,

through Whom also we have access by faith

into this grace in which we stand,

and rejoice in hope

of the glory of God.

Romans 5:1-2

Jill and Brad

Peace that Surpasses All Understanding

This post is #167 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.

January 29, 2009

One of the most painful parts of Hannah's cancer journey was witnessing the decline of her cognitive skills.  She was a girl who had always taken great pride in being a straight-A student, consistently at the top of her class, always completing her work before it was due ... and suddenly she was having difficulty putting sentences together.  She was becoming more and more quiet as the struggle to find words began to overtake her.

It was around this time that we decided it was time to have a serious conversation with her about the future.  Until this point, we had never discussed with her the possibility that she might die.  After all, we were continually praying for healing, treatments were ongoing, and her doctors still seemed to hold out some hope (though mighty slim) for a cure.  But as we observed the relentless march of the disease, we felt it was important to address the subject with her while she was still capable of having the conversation.

How do you have a conversation like that with your 17-year-old daughter?  Brad and I discussed our strategy, prayed together, and then headed to the living room.  We sat down on the couch beside her recliner and let her know that we wanted to discuss something important with her.  We gently talked about where we found ourselves with regard to her treatments, and asked her if she might want to talk about the possibility that she could be going to Heaven soon.   She looked at us calmly for a few moments, then said, "No, I'm fine.  I don't really want to talk about that."

And that was the extent of our conversation on that subject.  We let her know that we were available to her if at any time she wanted to discuss it, and she nodded and dozed off.  We never brought it up again, and she didn't either ... and as we suspected, it wasn't long before she was no longer cognitively capable of such a conversation.

Do I wish we had had that conversation?  Sometimes.  I wish I knew what she was really thinking in those days.  To my knowledge, she never shared her thoughts about what was happening to her with anyone.  As her body was dying, she was fully living Philippians 4:6-7:  "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

Even as her mind was leaving her, it was safely guarded in Christ Jesus.

My email from ten years ago today ...

We're at Children's getting a platelet infusion right now....they were at 36,000 today. Her ANC (immunity) has dropped to 90, and the cut-off for isolation is 500. The doctor says she can still be around people some, but only if she's willing to wear a mask all the time. He did say that he believes her right eye is moving better than it was the last time he saw her, which was about a week and a half ago. He feels that that is an encouraging sign. We will do chemo again on Monday, but she will only be able to have the Avastin, due to her low ANC count. Hannah likes that idea, because the Irinotecan makes her feel pretty rotten, and the Avastin is really the primary drug the doc wants her to have.

Hannah has developed a cough over the last couple of days. She doesn't cough very often, but when she does, it is very "chesty" sounding. The doc listened to her, and feels that the congestion is all in her upper chest, and not in her lower lungs. She also has a wisdom tooth which has picked right now to start coming through her gum. It's sore and bothers her when she tries to eat. We have to watch her really close for any signs of fever which would indicate infection. Any fever, and we'll be put in the hospital.

Our doctor still feels that some of the changes we've seen in Hannah recently are due to steroids and chemo. She's gotten very quiet lately, mostly just speaking when spoken to. She does ask questions sometimes, usually to find out what day it is or what we're having to eat. She's sometimes confused and occasionally says things that are really off the wall.  Her long term memory is very good, though, and she enjoyed the opportunity to visit with some of her old friends from El Dorado this week.

We also found out today that her next MRI is scheduled for February 16th, at 8:00 a.m. The results of this MRI will tell us how effective the chemo has been and determine our treatment strategy from this point on.

Again, we can never thank you enough for the emails, cards, calls, gifts, meals, and especially, for your prayers. We can never repay the kindnesses we have received, but please know that we will never forget them!

Jill and Brad

Eternally Secure

This post is #166 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.

January 26, 2009

As the days went by, it became more and more apparent that the chemotherapy Hannah was receiving was having very little, if any, effect.  Her oncologist had been searching for a clinical trial or experimental treatment that we could try, but her consistently low platelet levels made her ineligible for any trials.  There was nothing to do medically but continue on the path we were on.

Her earthly future was becoming more and more uncertain, but because of a decision she made when she was a little girl, we could rest in the fact that she was eternally secure.

My email from ten years ago today ...

We just got home from Children's Hospital a little while ago. Hannah's platelets were at 56,000 today, which is pretty good, but they went ahead and gave her an infusion anyway. Thankfully, it was high enough that we don't have to return until Thursday, which will be a nice break. We did find out that her ANC count (immunity level) has dropped back down to 500, which is right at the borderline for required isolation. We'll have to be very careful not to expose her to any illnesses, which can be difficult at this time of the year! This drop is probably due to the chemo treatment she received last Tuesday. We allowed Bethany to miss a day of school today to accompany us to Children's Hospital, so she could experience just a little taste of what Hannah goes through while she's at school all day. I think Hannah enjoyed having her along for the day.

Hannah continues to struggle with her vision, her balance, and extreme fatigue. Even though we have not yet seen a positive response to the chemotherapy treatments, God has been faithful to fill us with His peace. We know without a doubt that He is in control and that His love for Hannah and for us surpasses our knowledge. We placed her in His hands before she was born, and we know that she is eternally secure because of the decision she made to accept Christ as her Savior many years ago. And because of this knowledge, we can continue to say that God is good, all the time.

Jill and Brad

"...that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height— to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory..." Ephesians 3:17-21

Picking Winners

This post is #165 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.

Photo from www.justjared.com

January 23, 2009

The long-awaited new season of American Idol was now underway, and as always, our family life began to revolve around watching the bi-weekly and sometimes tri-weekly episodes.  Hannah had been hooked on the show since its inception, and she took it quite seriously.  She chose her favorites early in the season, and really "got to know" them.  She knew their hometowns, their favorite foods, how many brothers and sisters they had, and what they liked to do in their spare time.  Her track record for picking the winners early in the season was remarkable ... of course, she may have single-handedly pushed each one over the top with her faithful voting!

This particular season included a young singer from Conway, Arkansas, named Kris Allen.  She spotted him in the first episode ... after all, he was from Arkansas, he was talented, and he was super cute!  Naturally, he became her instant favorite.  The next time the show aired, I said something about watching for the guy from Arkansas ... and Hannah said, "There's a guy from Arkansas?"

It was one of the most jarring indications yet that she was slipping away from us.  Every episode she was able to watch that season included the exciting discovery all over again that there was a guy from Arkansas in the competition, and he was really doing well.

She would have been thrilled to know that Kris Allen won it all later that spring.  She always was good at picking the winners!

My email from ten years ago today ...

We're already home from our Children's Hospital visit today. Hannah's platelets were at 49,000, which is a good number, considering that she hasn't received platelets since Tuesday. They went ahead and gave her an infusion, and we're already back at home, where she is napping in her bed. We'll return on Monday for our regular clinic appointment. A group of Hannah's friends from school came out to the house to have lunch with her on Thursday of this week, which was a nice treat for her; and she will have some visitors from her former school in El Dorado next week. We are so thankful for our friends and family, who have been such a wonderful support for her and for all of us.

Hannah is doing well overall, although her vision has become a real problem for her. Her pupils are very dilated all the time, so she is sensitive to the light. Her near vision is very poor, but her farther vision for watching TV, etc., is pretty good. She's been enjoying watching American Idol over the last couple of weeks....that's been her favorite show for several years. Fatigue is another issue...she takes a couple of naps every day, and goes to bed early at night. However, her spirits are good, and her faith remains strong. We are so proud of her, and the way she's faced everything that's come her way. Your prayers and support have been a huge part of this, and we thank you for them.

God is good, all the time!

Jill and Brad

Hannah's Little Red Laptop

This post is #164 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.

January 20, 2009

At some point during that year, I began to carry Hannah's red laptop with me on every trip to Children's Hospital.  This laptop had been a surprise birthday gift for her back in October ... made even more special because all of our extended family contributed toward its purchase.  Unfortunately, she had only a brief window of time that she was able to use it herself due to her vision issues.

At her appointments, there was always a lot of sitting around and waiting ... waiting for bloodwork to be done, waiting for platelets, waiting for chemo infusions ... and I wrote my emails on this little red laptop while sitting beside Hannah's bed as she often dozed through these procedures.

I also used it to play Solitaire once my email was written for the day.  Not any of those fancy versions of Solitaire ... just plain old traditional Solitaire.  There was something mind-numbing about playing game after game, interspersed with the occasional reward of cards bouncing across the screen in victory.  If Brad was there with us, he and I would pass the laptop back and forth, taking turns playing; competing against each other for who could get the best score.  That silly game provided a much-needed escape from reality at times.

After Hannah went to Heaven I used that laptop for blogging and replying to emails, and it was also instrumental in the early years of the While We're Waiting ministry.  If you look carefully at the picture above, you'll see that many of the letters on the keyboard were actually worn completely off by the time I retired it a few years ago.  It may be retired, but it will always have a special place in our home.

My email from ten years ago today (typed on that red laptop) ...

We are still at Children's Hospital this afternoon...Hannah has had both of her IV chemo drugs, and she will be receiving a unit of platelets soon. After that, we'll be ready to go home. We will come back on Friday for bloodwork and possibly more platelets. The chemo makes her feel kind of crummy, but thankfully, it has not made her sick. The doctor tells us that we will probably do one more round of chemo in two weeks, and then have an MRI to check our progress.

God is good, all the time!

Jill and Brad

Facing Her Giants

This post is #163 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.

January 17, 2009

Hannah liked nothing better than to have her whole family together ... and ten years ago today, she got that opportunity.  Brad's parents, his brothers and sister and their spouses, and all of Hannah's cousins on that side of the family, including her newest cousin Faith who we were meeting for the first time, came to our house for the weekend.  It was crowded and loud and messy, but we were together.  No one said it out loud, but there was certainly an awareness that this could be the last time the entire Sullivan family would be together.

Hannah initially did not want to hold baby Faith.  She was not confident of her strength or her balance, and with her low vision, she was afraid she might drop her.  But once she got that baby in her arms, their bond was instant.  It's a memory we'll always treasure.

Just a couple weeks prior to this visit, the four of us had watched the movie "Facing the Giants" together..  We had seen it before, when it was in the theaters, but when we watched the DVD at home during this season of our lives, the movie seemed to take on new meaning.  The overarching themes of God's sovereignty in the uncertainties of life, never giving up, and facing our fears in His strength were very timely.

While everyone was at our house that weekend, Hannah announced that she wanted all of us to watch that movie together.  We tried to decline, citing lack of space and the difficulty of getting everyone focused on watching a movie most of them had already seen in the middle of the afternoon.  But she was insistent ... It was a good movie and we all must watch it together, no exceptions.  Hannah was not someone who typically demanded to get her way, and we wanted to honor her request.  So we dragged several dining room table chairs into the already-crowded living room and started the DVD.  Just a few minutes into the movie she was sound asleep in the recliner, but no one dared get up and seek more comfortable seating in another room.  We all watched that movie together as she requested and absorbed the messages it contained:

"If we win, we praise Him. And if we lose, we praise Him. Either way we honor Him with our actions and our attitudes."

"I resolve to give God everything I’ve got, then I’ll leave the results up to Him."

"Your job is to do the best you can, and leave the rest up to God."

I believed then, and I still believe now, that Hannah wanted us to hear those messages about trusting a sovereign God no matter what the results.

If we win, we praise Him.  And if we lose, we praise Him. 

A conscious choice we were facing daily at this point in Hannah's journey ... By His grace alone (not through any strength of our own), we determined that we would praise Him, win or lose.

So Much Love

This post is #162 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.

January 16, 2009

We were loved so well during Hannah's year-long cancer journey.  My "summary" email from the day before prompted a virtual flood of emails filled with prayers, well wishes, encouraging words, and above all ... love.  Even now, ten years later, I don't have the words to express how much the emails, cards, letters, gifts, phone calls, texts, etc., meant to our family as we walked through the fire.  I still have them today ... and I am still so thankful.

My email from a decade ago ...

What an amazing response we received to our email from yesterday! It is so wonderful to know that Hannah is being lifted before the Father’s throne by so many…What a blessing and comfort! There literally is not time to adequately respond to all of your emails, but we want you all to know how much we appreciate them. I think I’ve mentioned that I’m keeping all of the emails we receive…I’m actually cutting and pasting each one into a Word document…and, as of yesterday, that document is 203 pages long. And those are only the emails we’ve received since September! I have another binder already completely filled with emails received from February through September. We’re collecting cards, too…we’ve filled two baskets, and we just started a third one yesterday. All we can say is, “Thank you!”

We are at Children’s for another platelet infusion today, and we will return for her third chemo treatment next week…normally we come on Mondays, but due to the holiday, our next appointment will be Tuesday. Brad’s sister and brother-in-law and their brand new baby are coming to visit us from Texas this weekend, and Hannah is looking forward to meeting her new cousin, Faith, for the first time. Again, we thank you for your prayers and support…we know that God is good, all the time!

Jill and Brad

The Telephone Game

This post is #161 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.

January 15, 2009

Do you remember playing the Telephone Game when you were a kid?  It was best played with a large group of kids sitting in a circle.  The first kid would think of a sentence (the longer the better) and whisper it into the ear of the kid sitting next to him.  Then that kid would whisper it to the next one, and so on around the circle.  The last kid would then say out loud the sentence that was whispered into his or her ear.  It was inevitably quite different than the original sentence which started the game. 

That's what started to happen in our community and the communities surrounding it as Hannah's illness progressed.  We began to hear rumors that the word on the streets was that Hannah's death was "imminent" or that the doctors had given her "two weeks to live."  Neither of these things were true, at least as far as we knew, and we felt we needed to address these rumors before they went any further. 

By this time, my emails were going out to hundreds of people directly.  I was sending to so many people, I had to send my emails in three separate batches.  A large number of the people who received them directly forwarded them to others ... so thousands of people were receiving our updates on Hannah.  What a blessing it was to know that so many people were loving and praying for our family!  We received countless emails in reply, and I still have all of those emails printed out and in binders. 

My email from ten years ago today was our attempt to catch everyone up on our story and dispel the rumors going around while acknowledging that Hannah could be nearing the end of her earthly life ...

This really isn't going to be a "Hannah Sullivan update" as much as it's going to be "Hannah Sullivan summary". We've had some things on our hearts that we really wanted to take some time to share with you...

Many of you who receive these email updates joined our journey in the middle, and some of you only very recently, so we wanted to take a little time to review the events of the last eleven months. In February of 2008, Hannah began having some very unusual symptoms, including severe headaches and nausea in the mornings, double vision, and dilated pupils. We took her to our regular doctor, who referred us to an ophthalmologist, who referred us to a local hospital for an MRI. The MRI was done on February 20th, and indicated the presence of a tumor in the pineal region of Hannah's brain. We entered Arkansas Children's Hospital the next day, and on February 25th, surgery was done, the tumor was successfully removed, and sent off for a biopsy. She remained in the hospital for about six days following the surgery. When we returned about a week later for suture removal and to find out the results of the biopsy, we were told that the tumor was a Grade IV glioblastoma multiforme, a particularly aggressive type of cancer. We met with our oncologist that day, and he told us that this type of tumor was extremely rare in a girl Hannah's age (she was 16 at the time), but because she was so young and healthy, he felt that she had a 60-80% possibility of a cure. Hannah began a 6-week series of radiation treatments to her brain and an oral chemotherapy regimen. For several months, all went well...she completed her sophomore year with honors, enjoyed a fun summer, and began her junior year in the fall. MRIs were done every two months, with an "all clear" each time.

In September, she began having symptoms which were eerily similar to what she had experienced in February. An MRI was done, about a week earlier than was scheduled, and the results were not good. On September 25th, all four of us went to meet with Hannah’s oncologist, and he explained to us that her cancer had returned, in the form of multiple tumors in her brain and spine. He outlined a new treatment regimen which we were to begin immediately, but told us with tears in his eyes that even with treatment, her chance of cure was less than 5%. On the way home, we decided as a family that we would only share that 5% number with immediate family and a few very close friends and then disregard it, because we don't believe that our God is a God of percentages. Hannah began a series of 20 radiation treatments to her brain and spinal cord, and was to begin a new IV chemotherapy regimen within a month after completing radiation. The radiation was quite effective in shrinking the tumors; however, it took such a toll on her body that we were unable to begin the chemotherapy as scheduled due to extremely low blood counts. She was finally able to start the chemotherapy treatments the week before Christmas, and she is scheduled to receive a total of four (one every two weeks) to be completed on February 2nd. At that time, a scan will be done to determine the effectiveness of the chemotherapy and to help determine what her treatment plan will be from that point. We feel that she is in very good medical hands at Children's Hospital, as this is the same chemotherapy protocol that she would be receiving if we were at St. Jude's or Duke.

We've had a bit of a setback just over the last couple of weeks, in the form of worsened double vision (she's had some double vision ever since the surgery) and a greater feeling of being off balance, which has made reading impossible and walking somewhat difficult. An MRI done on January 4th showed a return of cancer cells in the area of the original tumor. This area cannot be re-radiated, and another surgery is not possible. We are proceeding with the chemotherapy treatment plan, which our oncologist acknowledges will need intervention from God to be effective. Hannah's mind is as clear as ever, her wit is sharp, and her faith is strong. She continually tells us not to worry about her...that she is going to be "just fine."

We share all of this with you now for a couple of reasons...one is that we have heard through various sources that some misinformation has arisen in our local community and some of the surrounding communities. It has been said that Hannah's death is "imminent" or that she's been given only "two weeks to live". We certainly understand how this type of misunderstanding can occur...we've all played the "Telephone" game and know how a story can easily and innocently become confused. Please know that we are not angry or upset by this...we just want to make sure the information is corrected. Our doctor has never given us the impression that death is imminent; nor has he given us any kind of time frame such as this. If that type of news is ever given to us, we will pass it along as we feel is appropriate.

The second, and far more important reason we share all of this (including the 5% number) with you right now, is to let you know that we are continuing to pray boldly for Hannah's complete healing, as we know so many of you are. The more bleak Hannah's medical situation appears to be, the more glory God can receive by providing a miraculous healing. He is an amazing God, and we know, without a doubt, that He is able to heal her, no matter what the medical doctors may say. At the same time, we do understand that in His sovereignty, He may choose to heal her by taking her to heaven. And when viewed from an eternal perspective, we know that her future is secure. Our job, as those who love her, is to boldly pray for her healing, and to be ready to accept her Father's will for her life. How great our rejoicing will be if He chooses for her to remain on this earth for many more years...and what an amazing testimony she will have! Far more difficult will be the "sacrifice of praise" we will give if He takes her home sooner than we would choose (I think I finally truly understand that phrase). In the meantime, we will live one day at a time, enjoying every moment we have with our family, and remembering that God is good, all the time.

Jill & Brad

"But now, Lord, what do I look for? My hope is in You." Psalm 39:7

"Through Jesus, therefore, let us continually offer to God a sacrifice of praise – the fruit of lips that confess His name." Hebrews 13:15

Platelets and Pasta

This post is #160 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.

January 14, 2009

Platelet infusions had become a routine part of our every-other-day life by this time.  A normal platelet level is between 150,000 and 400,000.  Over the last few months, Hannah's platelets had fluctuated from a low of 3,000 to a high of around 60,000 ... nowhere near where they needed to be.  Low platelets combined with the chemo drugs she was taking could result in uncontrolled bleeding, thus the ongoing infusions.

Hannah's appetite was good at this point, probably stimulated by the steroids, and she still enjoyed going out to eat.  With her poor vision and motor skills, it was a bit of a challenge getting her in and out of restaurants ... but if she wanted to go, we took her.  On this particular day, it was Macaroni Grill, and she enjoyed her favorite dish -- Penne Rustica. 

My email from ten years ago today ...

We're at Children's Hospital and they have just started Hannah's platelet infusion. She was at 51,000 today, which is pretty good, but we need to make sure they stay up. Her PICC line worked without any problem today, which was a relief! Hannah's symptoms have not worsened, for which we are thankful, and she is not having any pain or discomfort at all. She has requested lunch at Macaroni Grill today, so we will be heading there as soon as we're done here. God is so good to us, all the time!

"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24

Jill and Brad

A Heavy Burden for Small Shoulders

This post is #159 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.

January 12, 2009

At this point, I rarely went anywhere other than back and forth to Children's Hospital every other day.  I was no longer working, I was unable to attend church, and even my trips to Walmart were rare.  As Hannah's motor skills and vision began to decline, Brad began to accompany us more and more often on our trips to Little Rock to assist with transporting her.

While we were consumed with Hannah's care and hospital visits, 13-year-old Bethany was still participating in life.  She was going to school, playing basketball, cheerleading, and attending youth group.  As such, she became the face of our family in the community ... and the one who had to field all the well-meaning questions about her sister's condition.  What a heavy burden that was for her!  Those questions were difficult enough for us as adults to answer, much less a child at her tender age.  The doctors had not yet told us that Hannah was dying ... there still seemed to be some hope that the chemo drugs would be effective ... but even Bethany could see that unless God miraculously intervened, that would be the outcome.  So when you are repeatedly asked how your big sister is doing, and your own young heart is breaking at her deteriorating condition ... how do you respond?

One day we pulled Bethany out of school and had her accompany us to one of Hannah's appointments.  While she was gone, the school counselor (at our request) called an assembly of all Bethany's classmates and teachers and requested that they stop asking her how Hannah was doing.  That seemed to help, at least while she was in the school setting.

Such a heavy burden for such small shoulders.  

My email from a decade ago today ...

It's Monday, so we are at Children's for our regular clinic day. They had a little bit of trouble getting her bloodwork done today...her PICC line would not give a blood return, so they had to stick her to draw blood. Thankfully, they got a good vein on the first try. We just got the results back, and her platelets have dropped to 31,000, so she will be getting platelets today. Hopefully, her PICC line won't give us any trouble during the infusion...I'm not sure what we do if it doesn't.

Hannah seems to have stabilized right now, as far as her vision and her balance are concerned, and we are thankful for this. We used the wheelchair for the first time today, just to come in to the hospital and get to the clinic, and it was really helpful. Hannah seems to be adjusting to the situation really well. 

We would ask that you pray for Bethany, though...it's been difficult for her to see Hannah going through these changes over the last couple of weeks. And because she's in school and out in the community every day, she continually fields questions from well-meaning people who are concerned about Hannah and our family. Sometimes this can be difficult for her. So please keep her in your prayers, as well as Hannah. We hope to bring her with us to Children's next Monday, when Hannah gets her next dose of chemotherapy, just so she can feel a little more involved in her treatment.

We have received so many wonderful emails, phone calls, cards, gifts, etc., over the past couple of weeks. I wish we could respond to every one personally, but there are just too many. Please know that we are keeping every single email and card and we treasure each one. Thank you for keeping us reminded that God is good, all the time!

Jill and Brad

Manna for Each Day

This post is #158 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.

January 10, 2009

When I was a little girl, sitting in my Sunday School class in the basement of First Baptist Church of Phillips, Wisconsin, I learned all about the Israelites wandering in the wilderness for forty years, and how God gave them manna to eat. Our teacher described manna as little wafers that tasted like honey. I remember wishing I could taste manna, because I knew I would like it. Anything that tasted like honey had to be good. I remember thinking the Israelites were really lucky because they got to eat that stuff every day. Little did I know that someday I would be eating manna every day myself.

Let me explain.

When Hannah's brain tumor was found, my mind was flooded with "What Ifs". What if it's cancer? What if she's never the same after brain surgery? What if she dies during surgery? Then, once she had survived the surgery with basically no after-effects, and we found out it was cancer, a whole new set of "What Ifs" took over. What if she loses her hair? What if the chemo makes her really sick? What if her brain is damaged from the radiation? What if she doesn't survive this?

If you had asked me at the beginning of this journey if I could handle...

shaving my daughter's head for her...

watching her gradually lose her vision...

pushing her in a wheelchair when she could no longer walk on her own...

hearing a doctor tell us she had a less than 5% chance of survival...

listening to her struggle to communicate because she could no longer find the words...

feeding her when she could no longer feed herself...

holding her hand as took her last breath...

...I would have said, "No way. There is no way I could ever, EVER do any of those things! I am not strong enough to do all of that." And I would have been right ... There is no way I could have done any of those things on my own. But God gave me manna in the form of His strength every day.

Do you remember how God told Moses to instruct the Israelites regarding the manna? They were only to gather enough for each day. Did you catch that? Only enough for each day! Some of them tried to save themselves a little work and gathered some extra for the next day. Do you remember what happened to that manna? According to the ESV, "it bred worms and stank." (Exodus 16:20)

In the same way, God gave our family manna for each day .... just enough for each day. We couldn't look ahead into the future and worry about "What Ifs". We just had to trust God for our manna each day. If we did try to look too far ahead and let the worries and what ifs take over ... well, it just got wormy and stank!

The other thing the Israelites had to do was go out and gather the manna (Exodus 16:16). It didn't just fall into baskets for them ... they had to go out and get it. In the same way, I think we have to seek God's strength, and then be willing to receive it when He gives it. There were plenty of times when it would have been easier just to curl up into a fetal position and be angry about, or at least question God's plan for our family. We had to be willing to open our hands and receive God's gift of manna.

Finally, the manna was sweet like honey (Exodus 16:31). When I look back on it now, there were many moments of sweetness during Hannah's illness. Even though the journey itself was excruciatingly difficult, there are some sweet, precious memories that we wouldn't have otherwise, if not for her storm. Just the awareness of and appreciation of "good days" is a priceless gift.

Ten years ago today we were in need of manna as we acquired a handicapped tag for our car and made arrangements for a wheelchair.  My email from that day ...

We're at Children's waiting for platelets ... she's at 55,000 today, which is good, because she hasn't had an infusion since Monday. That means that these platelets were all made by her body. They still want to give her some, since we're heading into the weekend.

We have not yet seen any improvement in her vision or balance since starting the steroids. If anything, her balance may be worse ... we had to walk into the hospital today arm in arm to make sure she didn't fall. We talked to our specialty nurse today about getting a wheelchair, and she said she will have one delivered to our house, probably over the weekend. We've also gotten a handicapped tag to hang from the mirror in the car. She is somewhat frustrated by her limitations, but is still in good spirits. I think it's harder on us than her. She's still sleeping quite a bit, but her appetite has improved with the steroids.

A wonderful friend shared a passage from 2 Kings 19 this week and I wanted to share it with you...

Assyria was bullying King Hezekiah. The Assyrians were boasting of the power of their armies and how all the other kingdoms had fallen to them...no other gods had been able to stop the mighty Assyrians. But the prophet Isaiah sent these words of God to Hezekiah just as a reminder that He was in charge and not those who lived in the world:

"Do not be afraid of the words which you have heard ..." 2 Kings 19:6

God is good, all the time!

Jill and Brad

Wheel of Fortune

This post is #157 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.

January 7, 2009

Hannah's original tumor site (and the same area where cancer cells were now regrowing) was in the pineal region of her brain.  The primary job of the pineal gland is to produce melatonin, a hormone that modulates sleep.  That gland had taken quite a hit of radiation ... twice ... and it seemed to have gone into overdrive.  As Hannah's vision and balance issues increased, so did her need for sleep.  She began to sleep more and more during the day.  It wasn't really because she was fatigued; she just couldn't stay awake.  Her doctor told us that it could be the opposite ... that the damage to the pineal gland could cause her not be able to sleep!  Even though I wished she was awake more, I was thankful that she had the ability to peacefully sleep.

In addition to the ongoing double vision, her pupils were now constantly dilated due to intracranial pressure.  This made it impossible to read or do anything that required close-up vision, such as text on her phone or look at social media.  She was able to see the television fairly well, so when she was awake, we generally passed the time watching TV.  The one time of day she always seemed to be awake was early evening when Wheel of Fortune came on.  We would watch it as a family, and even though she could barely see the screen, and might have even dozed off for a second or two while the contestants were spinning the wheel, she could beat every one of us when it came to solving the puzzles!  Her mind was still as sharp as ever.

As her cancer progressed over the next few weeks and her cognitive skills did begin to deteriorate, she might not know what time of day it was or remember that she had just eaten five minutes earlier ... but she could still solve those Wheel of Fortune puzzles!  Still makes me smile today.

My email from ten years ago ...

Just a quick update...we're at Children's Hospital again today at the Hematology/Oncology Clinic for bloodwork. We had been told that Hannah would get platelets today since she didn't get them yesterday, but her platelet level was 63,000 today, so they have told us that she will not need an infusion after all. We will return on Friday for more bloodwork and a platelet infusion if needed. We have received several emails since yesterday from people who have asked about donating blood or platelets for Hannah. Children's Hospital does discourage people from donating for specific patients for a variety of reasons...mostly because there are so many people who need blood or blood products. We certainly do encourage you to donate, however!  Apparently, donations tend to drop off around the holidays, and that may explain the shortage of blood products lately.

Hannah continues to have vision and balance problems. She is not able to see well enough to read with her double vision, and she has balance problems when walking. The location of the tumor also makes her want to sleep a lot, so she takes several naps each day. We are hopeful that with the steroids and the chemo treatments, these problems will resolve themselves over time. Please pray for strength for her as she deals with these frustrations. She is just as sharp as ever cognitively, and we are so thankful for that.

God is good, all the time!

Jill and Brad

Reeling

This post is #156 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.

January 6, 2009

The remainder of that brief hospital stay passed in a blur.  The sudden roller-coaster plunge of the last couple of days had taken a toll on us.  The news that the "very faint stuff" seen in the area of the original tumor on Hannah's MRI from just three weeks ago was now "regrowth of cancer cells" had left us reeling ... especially after being told that everything was stable.  The sudden introduction of an additional chemotherapy drug with an entirely new slew of side effects was also a bit much to take in.  And then there were the concerns about administering either of these chemo drugs with her difficulty in maintaining adequate platelet levels, but the risks of not giving the drugs outweighed the potential risks of giving them. 

At this point, we just wanted to go home and huddle together as a family.

Before they would release us, though, Hannah's doctor wanted her to have a platelet infusion.  They sent over to the blood bank for the platelets ... and there were none available.  While we waited, they contacted numerous other locations around Little Rock where platelets might be found to no avail.  Apparently there were no platelets in all of central Arkansas.  At last they allowed us to go home with instructions to return the next day for an infusion.  What a relief to finally get home where we could begin to process the events of the last few days!

My email from a decade ago ... 

We should be heading home from Children's momentarily. Hannah had a good night, with no side effects at all from the chemotherapy she received yesterday. We are so thankful for that! One of the drugs can cause some rather unpleasant gastrointestinal problems, and she had no sign of that at all. 

They wanted to do a platelet infusion before we left, but there are no platelets available in all of Little Rock right now, so instead we will return tomorrow for an infusion. Then we will come back again on Friday for another one. Right now, we are just looking forward to spending the night at home! Thank you again for all your prayers ... God is good, all the time!

Jill and Brad

A Body Blow

This post is #155 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.

January 5, 2009

After the long day of sitting around the ER and the stress of waiting for MRI results, we were happy to finally be admitted to a room where Hannah could at least stretch out and get comfortable in a real bed.  We were so relieved by the good MRI report we'd received from the resident and the thought that maybe a few doses of steroids could resolve her vision and balance issues, we didn't even mind staying in the hospital overnight. 

We woke up that morning with a renewed hope that maybe ... just maybe ... the treatments were working.  Maybe all the increased issues we'd been seeing weren't actually signs she was leaving us, but just side effects of the chemo.  After all, her MRI was good!

Then came the body blow. 

Hannah's oncologist came into our room and gently explained that the emergency room resident had not read the MRI correctly. 

My email ...

We are still here at Children's Hospital and our oncologist just came by to see us. He shared with us that the information we were given about the MRI yesterday in the ER was not exactly correct. Apparently, there is some regrowth of cancer cells in the site of the original tumor, and that is the cause of the symptoms Hannah is having. That area cannot be re-radiated and another surgery is not an option, so we will be continuing with the chemotherapy as planned. 

He was somewhat concerned that the MRI results did not indicate that the chemo has had any effect yet as far as cutting off the blood supply to the tumors, but he acknowledged that he's never scanned anyone after only one treatment of  this particular drug. It may take multiple treatments for there to be any effect. He is also going to add in another chemotherapy drug to her treatment plan (Irinotecan), even though her platelet counts are still not as high as he would like for them to be. She is getting platelets right now, and will be getting the chemo drugs also this afternoon. 

We will spend the night again tonight, and should be coming home tomorrow. She does seem to be feeling better due to the steroids, but she has been sleeping almost around the clock, which the doctor explained is due to the location of the tumor.

As you can imagine, this news has come as quite a blow, but we are comforted by the knowledge that God is in control. We have placed Hannah in His hands, and we know that He loves her even more than we do. Please pray along with us that this chemo treatment today will begin the process of obliterating these cancer cells, and that Hannah's symptoms will begin to decrease. We know that even in the midst of a storm, God is good all the time.

Jill and Brad

Emergency Room Visit

This post is #154 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.

Photo credit: Stephen Downes on Foter.com / CC BY-NC

January 4, 2009

We were truly thankful for the time Hannah was able to enjoy with our extended family over the Christmas season, because once the holidays were over and everyone had headed home, her health unexpectedly began to decline.  Double vision had been an ongoing issue since she was first diagnosed, but it suddenly worsened and she struggled to get her eyes to focus together.  A feeling of being "off balance" was also part of her normal daily life, but virtually overnight she began having to lean on the wall for support as she walked down the hall.  With this troubling and sudden increase in symptoms, I called the oncologist on call at Children's Hospital (it was a Sunday morning) and we were told to bring her right in for an MRI.  Once we got there, I sent out a quick email  ...

We are at Children's Hospital this morning, waiting for an MRI. Over the last couple of days, Hannah has had increased double vision, difficulty focusing her eyes together, and a greater feeling of being off balance. She's unable to walk down the hallway without staggering. So, I called the on-call oncologist this morning, and she had us come to the ER at Children's...we have to go through the ER since it's Sunday. Please pray for a good scan, and that these symptoms will diminish. I don't know if we will get results today, but we will keep everyone posted as events unfold.

God is good, all the time!

Jill

Oh, that was a long day.  No emergency room is known for its comfort, and the one at Children's was no exception.  Hannah's vision and balance issues seemed to be magnified as she perched on the edge of the small examination table.  Fatigue was also weighing heavily on her and she attempted to lie down and sleep on that little table as the hours passed.  At some point during the day we left the ER for the MRI suite, and returned to the same little room when it was complete.  Then we waited some more for someone to come in and bring us the results.  For Brad and I, this was an incredibly heavy day.  Even as we prayed for good news, we knew that was probably not what we were going to get.  What other explanation could there be for this sudden increase in symptoms than new tumor growth?  Of course, we could not share these concerns with Hannah, or even discuss them with each other, since she was sitting right there.

Then there was a knock on the door, and the resident doctor came in to share the MRI results.  With unspeakable relief, I sent the following email at 5:00 that afternoon ...

"Praise God from Whom all blessings flow..."

We just heard from the resident doctor who is here on duty in the ER. The MRI showed no dramatic changes from the one done a few weeks ago! She said that the tumors on the brain stem were slightly more bright than they were on the last MRI, but there were no new lesions or any major changes that had taken place. She said there was no real clear indication of increased intracranial pressure, but that the tumors are in a location that could cause that, and they believe that the symptoms Hannah is having are due to slightly increased pressure in her brain. 

So...they are going to admit us and keep us overnight, starting her on a fairly high dose of steroids in an attempt to decrease this pressure. They also just want to observe her to make sure there are no increased symptoms. Basically, as she explained it, it's kind of a good news/bad news situation...the good news being that her MRI is relatively stable with no obvious indication of any new problems, and the bad news being that they don't know exactly why she's having these symptoms, but they have a plan to bring them under control. So we are breathing a sigh of relief tonight, and praising God for answered prayers again!

Tomorrow we will have our regularly scheduled clinic appointment, and we will be able to discuss all of this with our regular oncologist. As far as we know she will still receive her chemo treatment tomorrow.

Thank you so much for all of your prayers for us today....we have really felt them throughout this rather difficult day. God truly is good all the time, and we are so thankful for His people!

Jill and Brad