Struggle

Posted by wendy on November 1, 2010

So this chemo started off surprisingly well. After taking the medication early Wednesday morning, Emmett had a good Wednesday and Thursday. He was up and about a good deal of the day. But with the weekend came some unexpected difficulties. Emmett’s feeding tube has been leaking quite a bit. Other than being a nuisance, this makes it difficult to keep him hydrated and fed. He’s also been very weak, spending most of the day in bed, and usually having at least one vomiting spell a day. Supposedly these side effects are part of the chemo. There is always the fear lurking, though, that these aren’t chemo side effects, and that he won’t get stronger. So the weekend has been discouraging, and Emmett has been struggling a great deal with depression.

Since this is our first run of a new chemo, we are not familiar with the cycle, so we have no idea when to anticipate Emmett’s strength or appetite returning. We asked Emmett’s mom to stay longer than usual to help with Quinn, and though we love her company, needing the extra help is discouraging. Right now we’re worn thin. We cry a lot. Emmett still struggles to sleep at night, and we’re both tired most of the time.

So, in short, we are in great need of prayers at the moment. We struggle to keep going with hope, and we would appreciate continued payers for endurance and joy in our difficult journey. Thanks for walking with us. We’re blessed to have such a wonderful community of friends and family.

Another Round of Chicken

Posted by wendy on November 3, 2010

Come out tomorrow night (Thursday) to the Brentwood Chick-fil-a on Franklin Rd. from 4-8 pm to show your support for Team Emmett. Some friends have graciously organized another fund raiser for us, and we hope to be there for some much needed social time. Hope to see you there!

It's cold in here

Posted by wendy on November 6, 2010

I’m snuggled down in the air mattress in our room. Emmett fell asleep a couple hours ago and Quinn is now in bed. I’m headed to bed myself soon after this post is completed and I give Emmett his evening meds. It has been a long, full week. Last night at Chick-fil-a was very encouraging. It was wonderful to see so many friends and family out to support us, but Emmett pushed himself too hard and started throwing up when we got home. He was up and around a little today, but his energy and nausea are still pretty severe and unpredictable. This chemo certainly has been rougher than we anticipated, or maybe we just forgot how intense chemo can be.

Emmett mentioned earlier this week how wonderful it had been to have six weeks off chemo. Although we were anxious the whole time about the cancer, it was so nice for him to be able to do little things around the house, play trains with Quinn, and take short outings as a family. We were able to play putt putt, do the grocery shopping, or take short walks. This week, Emmett has been completely out of commission. The trial doctor is concerned because Emmett shouldn’t be this fatigued, but we’re hopeful that he will come out of it soon.

This morning we got the faintest glimmer of good news. The trial nurse called about Emmett’s blood work, and some of the liver tests they normally run came back significantly better than before Emmett started the chemo. It does not tell us anything about the cancer, but it does indicate that the drugs are at least interfering with the cancer enough to help Emmett’s liver function closer to normal. However tiny, it is enough good news to keep us forging ahead on this journey.

We are quite weary. Please pray for Emmett’s strength to return and for continued endurance. Pray for sweet rest this weekend and new mercies to find us each morning. Thank you. so much.

Eloi, Eloi, lama sabachthani?

Posted by wendy on November 8, 2010/p>

Matthew 27: 45-46

⁴⁵ From noon until three in the afternoon darkness came over all the land. ⁴⁶ About three in the afternoon Jesus cried out in a loud voice, “Eli, Eli, lema sabachthani?” (which means “My God, my God, why have you forsaken me?”).

Job 6: 1-10

¹ Then Job replied:

² “If only my anguish could be weighed
and all my misery be placed on the scales!
³ It would surely outweigh the sand of the seas—
no wonder my words have been impetuous.
⁴ The arrows of the Almighty are in me,
my spirit drinks in their poison;
God’s terrors are marshaled against me.
⁵ Does a wild donkey bray when it has grass,
or an ox bellow when it has fodder?
⁶ Is tasteless food eaten without salt,
or is there flavor in the sap of the mallow^[a]?
⁷ I refuse to touch it;
such food makes me ill.

⁸ “Oh, that I might have my request,
that God would grant what I hope for,
⁹ that God would be willing to crush me,
to let loose his hand and cut off my life!
¹⁰ Then I would still have this consolation—
my joy in unrelenting pain—
that I had not denied the words of the Holy One.

Excerpts form a commentary on Job 6 & 7 by Matthew Henry

The feeling sense of the wrath of God is harder to bear than any outward afflictions. What then did the Savior endure in the garden and on the cross, when he bore our sins, and his soul was made a sacrifice to Divine justice for us?

I have always enjoyed, but never really understood, the book of Job. It occurred to me recently that a more thorough reading and reflection of Job might give me some insights on how to bear suffering in a way that honors God. My previous understanding of Job was quite simplistic. In previous readings, I had gleaned basically 5 things:

1. God allows suffering
2. Suffering is not always the direct result of a specific sin
3. Job’s friends get it wrong, even though they say some good things
4. Job, even though he basically got it right, still needs a good butt kicking from God
5. God’s presence is the only meaningful answer to our suffering

I’ve always thought those were pretty good summaries of Job, but I realized that a surface understanding of suffering in general is not at all helpful when you are actually going through suffering. I don’t simply mean things that are uncomfortable. When there is an end in sight, pretty much anything can be endured graciously for a time. But for long-term suffering, where there is no visible hope of relief, as in Job’s case, suffering graciously means something very different.

I was struck with how much the opening of Job 6 resonated with my own heart and Emmett’s. Intense, long-term suffering is soul-wearying. When we first come to love God, we (meaning I, really) tend to have noble thoughts of bearing our savior’s cross, thinking of the sufferings of others as something glorious and exalting. When facing our own sufferings, though, we find ourselves reduced to nothing almost instantaneously. If the suffering is long-term, then the constant assault of daily life, in addition to our usual sinful nature and shortcomings, is positively overwhelming in it’s force. Even in small ways I find myself rendered completely unable to do simple functions. Over lunch with a friend last week, for example, I couldn’t think of a single intelligent or thoughtful thing to ask or say, and I left feeling like a total awkward doofus (and yes, that is the most appropriate word to describe my self-image at that point). Or Sunday at church when I ran in to some old acquaintances I was not expecting, I found myself completely unable to bring to mind any thoughtful question or kind word. Though these examples seem insignificant, when compounded with my inability to love my son and husband better, my complete lack of enthusiasm in prayer, and my sinful nature in general, I often feel just as Job in these passages. Namely, I feel, in some small way, a sense of the wrath of God against mankind, as only deep long-term suffering can give.

So in my self-pity and hopelessness, I began to read the book of Job, because, after all, at least I have better friends than Job, right? I find myself surrounded by love and encouragement, hopeful prayers and generous kindness, but still I find simply enduring day to day difficult beyond words. I wanted to learn how to live with suffering in a way that exalts God. But when I read Matthew Henry’s commentary on the opening of Job, Chapter 6, I was struck with deep conviction. Our deepest sufferings are only the tiniest glimpse of what our savior endured on the cross in our behalf. If long-term suffering gives us a small idea of God’s wrath, then what must Christ have endured on the cross when he bore the sins of all mankind? How much more wrath am I saved from because I am clothed by the righteousness of my savior! And what sweetness that we can draw near to him knowing that he endured far more than we can imagine. I do not pretend that suffering is made easy by a glimpse of the depth our savior’s sufferings, but my trials become less burdensome. My heart has not felt light in a long while, and some of that weight is lifted for a time by this knowledge. May the remembrance of Christ’s sacrifice do the same for you this morning.

Doesn’t that sound like a lovely ending to a blog post? I think so, but to spite my silly vanity I’m not going to end there because as I read on, I came across another passage in Job that resonated with me:

From Job 7: (he is complaining to God)

1 “Do not mortals have hard service on earth?
Are not their days like those of hired laborers?
2 Like a slave longing for the evening shadows,
or a hired laborer waiting to be paid,
3 so I have been allotted months of futility,
and nights of misery have been assigned to me.
4 When I lie down I think, ‘How long before I get up?’
The night drags on, and I toss and turn until dawn.
5 My body is clothed with worms and scabs,
my skin is broken and festering.

It occurred to me that this passage of Job might resonate strongly with Emmett. One of Emmett’s greatest sources of grief is that he is so much confined to the bed. He weeps because he cannot be as helpful as he would like, and sometimes he gets downright angry. The other night he told Quinn that he would find his blanket while Quinn watched a bit of movie before bed. We had trouble finding the blanket, and Emmett made himself sick looking for the blanket because he had told Quinn that he would bring him the blanket. We finally found the blanket in the car, but only after Emmett had become angry with his physical limitations. This morning I read this little bit of commentary from Matthew Henry on this passage in Job:

His [Job’s] days were useless, and had long been so; but when we are not able to work for God, if we sit still quietly for him, we shall be accepted. His nights were restless. Whatever is grievous, it is good to see it appointed for us, and as designed for some holy end.

Emmett struggles to accept his physical limitations. Often he pushes through pain and nausea like a king, and I am continually impressed with how much Emmett pushes himself to do more despite the suffering it brings him. When he could easily give up and stay in bed, he persists in coming to the dinner table, playing with Quinn or helping me. Often though, his physical limitations cannot be overcome with will power, and Emmett feels broken, defeated, and worthless. Like many people, Emmett derives much joy from helping other, so it crushes him to be so dependent on the help of others. My newly focused prayers for Emmett comes from this insight offered by Matthew Henry, that Emmett would feel God’s pleasure over him as he rests and that he would find peace in God’s calling on his life right now. Would you pray that with me?

More drama, because we are so good at it.

Posted by wendy on November 10, 2010

So as I type, we’re sitting in the Vandy ER waiting to be admitted. There is definitely a blood transfusion on the schedule, and possibly another endoscopy. We’ve been monitoring some bleeding around Emmett’s feeding tube. It was mild and intermittent, almost disappearing altogether yesterday. In fact, Emmett was having a spectacular day on Tuesday. When I called on my way home from work, he was sitting on the porch eating solid food for breakfast. When I arrived home, he was raking the front yard slowly, but steadily. Although he spent some time resting in the afternoon, he was up and about again, even wanting to go out to Blue Coast Burrito for dinner. I stayed up a little late with him playing some old school Mario Brothers on the Wii but had to head to bed early for school. Emmett was staying up a little later to take his evening meds. He woke me at about 12:30 Wednesday morning because he had been bleeding profusely around his feeding tube and vomiting blood. So after some packing and a few phone calls, we made that very familiar trip to the Vanderbilt ER where vomiting blood apparently gets you sent to the top of the list.

So back we went to a little room where they took some blood and set up a basic IV for fluids and some preventative medications. Then we sat for a long time. Blood has to come from somewhere, so the rest of today will be spent investigating where and how severe the bleeding is. Getting blood requires an IV, and getting stuck by a needle sends Emmett into convulsions, so he experienced a great deal of anxiety. Even with the anti-anxiety medicine, Emmett’s whole body still shook during the entire process of getting an IV. Now he is asleep and they just started the transfusion, which usually takes several hours. If they go ahead with the scope, then Emmett will be out of it all day today and probably tomorrow.

So pray for Emmett to have peace. He can be his own worst enemy in the hospital. He gets carried away in a panic by the merest mention of a needle and loses a great deal of ability to reason sensibly. Add to that the mention of a scope (since the last 3 went horribly), and you might as well physically torture him right then. Over and over during our night in the hospital, Emmett kept saying, “I can’t do this again,” as if we were back to that first week in February. I have difficulty knowing how to encourage him. If I am sweet and gentle, he gets grouchy. If I kindly, but firmly point out his irrationality, he gets grouchier. If I’m silly, I get the tiniest hint of a smile before he gets grouchy again. After being very short with me at one point this morning, he got so mad at himself for overreacting that he teared up. I usually have the distinction of being the more irrational person in our relationship, so it is very unsettling for both of us to have the roles reversed. From my own experiences with irrationality I can, at least a little, understand his reactions and subsequent frustration with himself. I can also gather from his extreme physical responses, that his anxiety must be a huge burden for him to carry. Sometimes the anti-anxiety meds only prevent him from expressing his anxiety, causing him to remain anxious without being conscious. So pray for a supernatural peace to rest in his heart today, and especially that his heart would be at rest while he is medicated.

We talked through many of the decisions that would have to be made today. Emmett and I tend to be on the same page a lot of the time, and I’ve had a lot of practice at navigating the medical world, so I’m not anxious, but I also don’t like making decisions for Emmett, even small ones, while he is asleep. None of our decisions are huge, but little things, like if or when to put a second IV in his arm, can have dramatic consequences on his mental state. So pray that I would make wise decisions as I navigate the rest of this process while Emmett is heavily medicated.

Thanks again for your love and prayers. I will update when we know more, but since hospital time moves slower than molasses, I don’t expect that to be soon. Love to you all -

Ah... that familiar hospital stupor...

Posted by wendy on November 11, 2010

So Ive come to realize after about two hours in a hospital or clinic that brain cells slowly begin to seep out my ears and I make a gradual descent into idiocy and madness. A fog descends upon my feeble brain and my my eyes glaze over in a zombie-like stupor. It’s like living in a bizarro time warp as other people bustle about finding things to do and look important as you wait for the next medicine, test, doctor visit, etc. So I apologize for any lack of coherence, as I feel like I’ve been hit repeatedly with a stupid stick for the last 30 or so hours.

So we came into the ER Tuesday night/Wednesday morning because Emmett was vomiting blood. They watched him closely and determined that is was a slow, intermittent loss of blood not worthy of the ICU much to our thankfulness. They gave him a blood transfusion and then laid out our options. Given Emmett’s recent trouble with his feeding tube, both the GI and oncology staff seem to think the most likely cause of the bleeding is a ulcer in Emmett’s stomach around his feeding tube. They can either make this assumption and then prescribe medicines accordingly or they can go take a look using a scoping procedure called and endoscopy. There is a small chance they could do something during the endoscopy to help stop the bleeding, but most likely it would just give us a better understanding of what is going on. Given our unpleasant experiences with endoscopies, they let us choose. Although they offered to so the endoscopy yesterday, Emmett was passed out most of the day. I had a feeling I knew what he wanted, but I had told him before the sedative that I would not make any decisions about endoscopies without him, so I waited for him to wake up last night. We talked and decided to go ahead with the endoscopy procedure so that we would have more information and not risk being back in the ER next week when we’re supposed to be flying to Texas. If all goes well, we can continue chemo treatment, just adding an antacid into our daily medicines. We are praying of course, that all goes well and that we can get back to focusing on the cancer treatment.

Thank you for the prayers, visits, meals, notes, and other ways you find to show us how much we are loved. They are felt every minute of every day.

A little bit of good news.

Posted by wendy on November 11, 2010

So the scope process was short. All the doctor found was a little ulcer in Emmett’s esophagus that looked like it had bled itself out already- wait I’m not sure you caught that. When I say all the doctor found, I mean ALL the doctor found was a small ulcer in Emmett’s esophagus. So where was the cancer? Well, apparently not in his esophagus anymore. CT scans don’t measure the cancer in the esophagus; there is no good way to do that other than an endoscopy, which we have not had since before Emmett started treatment. Unfortunately, it is the cancer in the liver that will kill him (hence the importance of the CT scans), so we still have a ways to go. But of all the possible results from today’s endoscopy, this result was the best possible and very much not what we were expecting. So all around, we feel blessed by the good news, however slight it may be.

The ulcer needs no treatment other than an antacid for a few weeks. According to the doc, the ulcer already looked like it was on the mend, so we’re praying that the worst of the bleeding is over and that Emmett can rest and recuperate before returning to Houston next week. We continue to pray that the Lord would kill all of the cancer in Emmett’s body, while simultaneously trying to submit our wills to the understanding that whatever comes from the Lord is ultimately best. That is a particularly difficult prayer, to submit to the will of God when you cannot see any goodness in his will.

Thank you for your prayers. We invite you to rejoice with us for today.

Weekend Summary

Posted by wendy on November 15, 2010

Just a quick summary of our weekend.

We came home from the hospital on Friday much encouraged by the good news. We ended up returning to the ER on Saturday because Emmett was running a fever and our doctors wanted us to get blood cultures and an antibiotic, and we were able to return home after a somewhat frustratingly comical ordeal at the ER. We rested on Sunday and are having a small slice of normal life today.

Two prayer requests. First, we have to go in today or tomorrow to get Emmett’s feeding tube cleared as it has become blocked over the weekend. Second, Emmett has had some more bleeding that might indicate the ulcer is active again. Please pray that we can get both these issues cleared up before we leave for Houston on Wednesday. We would like to continue treatment, so pray that we can get all these other minor issues fixed in time to get Emmett rested for the trip to Houston.

Thank you so much for the prayers!

Update from a soap box

Posted by wendy on November 19, 2010

So… I thought I posted a short update on Tuesday, but it turns out I never actually hit post. So here’s a quick update. We returned to Houston Wednesday afternoon. God blessed Emmett with good health for the trip. I even got to see him down quite a few fajitas Wednesday night, which was wondrous to behold. It was the first real meal he’d had in a long time. The visit with the doctors was positive, though there was no CT scan this time. We just met, chatted, and tried to regulate Emmett’s medications for symptoms and side effects. We love the staff at MD Anderson and are encouraged by their thoughtfulness and attention to detail. So we returned home last night and began another chemo regimen this morning. Pray for less vomiting this round, more energy, and a speedier recovery without all our previous complications.

On a side note, I heard an interview on NPR by a doctor from Columbia University who recently published a book called The Emperor of all Maladies: A Biography of Cancer. The book has gone to the top of my must read list for it’s historical insight into medicine and the complicated nature of treating cancer, but I was struck by one of the final questions asked by the interviewer. She asked the author what he would like to see in the future of cancer. His reply? That he would like to see treatments developed for the most difficult to treat cancers, namely metastatic esophageal and pancreatic cancers because there was no current meaningful treatment. Despite all our hope, his response was a grim reminder that we are in unexplored territory. Just to give you an idea of what we face. It is expected that around 16,000 people will be diagnosed with esophageal cancer this year and around 14,500 people will die from it this year. Percentage wise this cancer is one of the most deadly, even though diagnoses are less common than other cancers. Despite its rarity, though, esophageal cancer is the 7th most common cause of cancer death in men. Yet esophageal cancer receives less than half a percent of the National Cancer Institute’s research money for cancer. Less than half a percent. In case you missed the point, that number rounds down to 0. Anything sound wrong to you about that? Emmett’s cancer originated where the stomach meets the esophagus, which makes it somewhat more tricky to classify. Diagnoses of this exact cancer (called a GI junction cancer) are increasing faster than any other type of cancer, yet oncologists are not even entirely certain how to classify it, much less treat it.

Doesn’t that just make you a little bit angry? Not the mean kind of angry, but the get off your butt and do something kind of angry? Needless to say that we have some ideas about what we need to do in the future. For right now, though, we’re focusing on Emmett and praying for a miracle. Thank you so much for praying with us.

A Strange Role Reversal

Posted by wendy on November 22, 2010

So we returned from Houston with a new medicine, now referred to around our house as the “magic happy drug” because it eliminates the mucus buildup that was about 95% of Emmett’s vomiting problem. (I mean, seriously, Vanderbilt, we complained of this every visit and you never thought to give us this drug!) Consequently, Emmett has been able to lead a life free of vomiting and dry heaving, which he was previously experiencing 3-4 times per day. The impact on his strength and appetite has been quite stunning. It has been such a blessing to watch him consume fajitas at an alarming pace, rake the lawn, and drive himself crazy trying to complete his mental to-do list. At the same time, it makes me a bit sad to see him keep up such a frenetic pace. He doesn’t want to sit still because he’s afraid that, without warning, he might be rendered helpless again and wants to get as much done as possible.

On the flip side, I’ve been plagued by my own body’s inability to keep going at ridiculous speeds. Friday afternoon my body finally shut down in response to a very hectic two weeks. I’m not sure if I’m actually ill or my whole body is conspiring against me to force me to sleep, but I spent most of the weekend in bed while Emmett has been on overdrive. The role reversal has been quite revealing.

Right now we are thankful for Emmett’s good days and praying for many, many more. We are praying that this chemotherapy is killing the cancer, especially in Emmett’s liver, and are hopeful for encouraging news on our CT scan in December. Thank you so much for joining with us in prayer and thankfulness.

Thanksgiving

Posted by wendy on November 25, 2010

Well, Emmett kept saying he wanted to keep moving as long as possible because he figured the chemo would knock him out sooner or later. He was right. He hasn’t been out of bed since yesterday morning. The familiar chemo grossness has taken over and sometime early this morning I noticed he was moaning every time I coughed or turned, so I moved to the air mattress. We were going to head over to some friends for Thanksgiving dinner, but now it looks like we’ll both spend the day in bed and have take out Cracker Barrel for our big festive meal. If we’re lucky Emmett might get some nutritional supplement through the feeding tube because he can’t stand the thought of eating. mmmmm. Jealous yet?

I’m not particularly sad about missing out on the Thanksgiving festivities because of chemo. In fact, I’m feeling particularly thankful for the chemo right now because without this kind of medicine, Emmett wouldn’t be here right now. Without the chemo, we wouldn’t have had a sweet summer together as a family or one more Halloween or the hope of one more Christmas or any number of sweet days when Emmett has been able to get up and around. I’m thankful for the crazy flawed medical system we have that, although not perfect, produces some pretty amazing things. I am thankful for the glorious ignorance, or perhaps wisdom, of my 3-year old boy who is simultaneously so gracious and loving in the presence of grief and suffering, yet possesses such a deep, abiding joy in life. I’m thankful for my parents who will give up their holiday to drive up here and play with Quinn and eat take out food so I can sleep off my cold and be close to Emmett while he is sleeping off his chemo. I’m thankful for my in-laws who come back and forth so much to help out. I’m thankful for friends who don’t mind if we cancel at the last minute or need help at strange hours of the night. I am thankful for the kindness of friends, acquaintances, and even strangers that keeps me putting one foot in front of the other when I can barely stand. I’m thankful for the Lord’s tenderness in the midst of suffering that comes so often through the people around us.

Yet I’m also deeply grieved because I know that in the absence of a miracle, this might be our last holiday season together. Not that certain days matter more than others to me, for I’d give up celebrating all holidays for a lifetime of normal days with Emmett. But the holiday season is a powerful reminder of the passage of time. It has been just over nine months since Emmett was diagnosed. However difficult, we have cherished these days together and pray for many, many more. Thank you for praying with us. I hope you Thanksgiving is blessed with peace and joy.