Quiet can be good.

Posted by emmett on April 3, 2010

There’s been a little less hub bub here at Teamemmett.com these past few days. The reasons are all good ones. We have had a short little string of progressively good days. YEsterday (friday) being one of the best. I spent Thursday out of bed for several hours, sitting on the front porch, soaking up the sun, sitting up inside and just soaking in not being in bed for a little while. Friday, I was up and out around 11:00 am and I think I finally crawled back in bed about 10:00 pm. I got to sit up on the front porch with good friends and hang out, I had smoothies with my wife and friends from 9 fruits. I got to visit with extended family, and then i even got out for a trip to target with my wife, which was a blissful, although short, trip. Then I got to hang out with another friend later friday evening shooting the breeze and playing a little x-box as well. After it was all said and done, I was a tired little fella, but, it was a good full day. Today i have been sleeping, a LOT. I guess catching up from being so active, repairing muscles and whatever else the body needs to do. but don’t worry, I plan to be up and at them today here shortly before I call it an evening.

So be reassured, that even though there are some times when we don’t post as much as normal, things could just be running so smoothly, that we’re just soaking up the good day and storing away as much of it as possible for when the next down day comes. Thanks again for following, for praying, and for walking with us.

Alone at last

Posted by wendy on April 5, 2010

Happy Easter!

So we have 48 hours of unchaperoned freedom!

After having round the clock help for nearly two months, we finally have the house to ourselves for a little peace and quiet. Emmett spent most of the day sleeping. He said he didn’t feel too nauseous, but he just couldn’t manage to keep his eyes open. He was out of bed some to sit on the porch, take a short walk around the yard to look at the garden, chat with friends, and open his Easter basket, but mostly, he’s been snoozing away. He’s pushed it hard the last couple of days, so it’s been a good day for him to rest. He wasn’t able to make it to the Good Friday or Easter service as we hoped, but his spirits are good. Tomorrow we’re hoping he’s strong enough to get a hair cut. A very talented friend is coming to our house, thankfully, so he won’t have to go out.

After two months of not cooking or doing the grocery shopping myself and having many different people fill those rolls, it was nice to clean and purge the kitchen, refold all the towels in the linen closet and bathrooms the same way, organize Quinn’s toys, and shut down the house all by myself. It is also very nice that Emmett’s strong enough to make the likelihood of a midnight ER low, so staying here without help isn’t scary. We’re currently running a schedule of medications and feedings that seems to keep him hydrated. I get up twice during the night to give him nausea meds and extra fluids, but that makes the mornings more bearable for him. We’re hoping that this new schedule, combined with a new anti-nausea drug will keep Emmett hydrated and out of the ER this coming week as he faces his second round of chemo on Wednesday, assuming of course that his blood cell count is high enough to allow him to do chemo.

Of course we continue to pray for Emmett’s healing, but for whatever reason, God is keeping us in this battle, so our specific prayer requests for this week are that:

1. Emmett’s body would be making the necessary red blood cells so that his count is high enough to do chemo. Apparently the tumor is slowly oozing blood, and there’s not much they can do about that. Combine that fact with the chemo, which lowers blood cell count, and Emmett’s body is going to have a hard time making enough red and white blood cells to keep up. There’s not much we can do at home except keep him hydrated and fed, which we are doing as best as we can.
2. We stay out of the ER this week. Including – that we would have wisdom as to how to balance medications, feedings, and hydration, and the I would have endurance to get up 2-3 times in the middle of the night every night, and that Emmett would not come down with a strange fever like last week.
3. Our hearts would find joy as we particularly dread this second round of chemo. There was much excitement before the first round, but now much dread, especially for Emmett. I don’t think that I even understand how miserable the chemotherapy makes Emmett, but watching him is excruciating, so I can only imagine how hard it is for him.

I think that’s all for the evening. Thank you again for your prayers and love. We are held up by your faith, even when ours is failing. Praise the Lord that Christ has risen to give us all new life in him.

Another punch in the frequent gurney card

Posted by wendy on April 6, 2010

So we’re back in the ER.

We’ve been keeping an eye on Emmett’s temperature because of general chemo guidelines and our prior experience with fevers and the ER. He spiked earlier today around 99.5, but then went back down. Tonight he felt warm, so I thought I’d get a baseline reading for the night, and he registered at 102. Other than being tired the past couple days, he has no other symptoms. We knew we had to come in, but we waited to make sure the fever didn’t go away like last time. Sure enough, when we got here, he was still reading a solid 102.

When we came about 10 days ago, they couldn’t find an infection, but sent us home with an antibiotic. I gave Emmett the last dose around 2 am on Saturday morning. Emmett’s good days were Friday and Saturday, and then Sunday he started feeling tired again. Thus far the doctors seem to think that the antibiotic was keeping the fever down, but maybe not addressing the problem. So that means lots more blood sticks, IV antibiotics, fluids, and maybe a transfusion in our future. I don’t know if we’ll be admitted or simply spend another night in the ER and go home.

We don’t know what this information means about continuing with chemo this week, but thought we’d send the word out to pray. We’ll update when we know more.

Pray for our hearts. I feel one step away from completely losing it. Thankfully I had the foresight to make a cup of tea (P.G. Tips, of course) to bring to the ER. Tea always makes life a little more bearable.

More docs. Time to go.

Cancer fever

Posted by wendy on April 7, 2010

So if I were really witty, I’d write this whole blog post in the style of some seventies disco song.

Good thing I’m not.

So Emmett has a fever, and they don’t know why. He gets off the antibiotics and then it comes back almost immediately. He had such a good day Friday and Saturday because he was still on and Monday he felt awful and laid in bed all day. When he had the high fever last night and we took him in, the fever went away before they ever started the antibiotics, but the antibiotics made him feel better. We came home with more antibiotics, but the fever started up again a little while ago. If we go back to the hospital, though, they’re just going to watch him until the blood cultures come back. They expect those to turn up negative. What does that mean? That means that they don’t know what’s causing the fever. Emmett has no other signs of infection, so the fever is most likely cause by the chemo or even the cancer itself. So what does that mean? Maybe Emmett stays on antibiotics through the whole course of chemo. We probably will have many more visits to the ER. We won’t be doing chemo tomorrow because they want to make sure the blood cultures turn up negative first. We’re trying to reschedule for Friday, but we don’t have confirmation yet.

That’s the details. We’re tired and worn out but glad to be home. We don’t really know how to pray or what God is up to, so just pray for us tonight that the Holy Spirit would dwell in us richly to comfort and encourage.

A good butt kicking is always helpful

Posted by wendy on April 8, 2010

So…

If you’re out there and you know Emt’s email address or are his friend on facebook, then I need you to send him a message. Be thoughtful, encouraging, funny, or distracting. Just send him something.

I’m probably going to get in trouble for writing this, but sometimes I’m the last person he listens to because I’m his wife.

But Emmett needs your encouragement. His fever complications make him anxious, which makes him vomit, which sends him spiraling downward again. In getting Quinn ready for bed tonight, I heard the little beep of the thermometer at least half a dozen times in a half hour. He got overwhelmed by everything, which made him emotional, and the sinus drainage then made him vomit again. He spends a lot of each day in bed, which gives him lots of time to indulge in emotions he should be avoiding. Please help me by helping distract and motivate him.

There’s only so much he will listen to from me, so I’m asking for your help.

Thanks.

Emmett wear

Posted by wendy on April 8, 2010

It’s time to break out your Emmett wear and be like those annoying groups of people who all wear matching shirts in public. Tomorrow is Chemo, take 2, and we’re officially declaring it Team Emmett wear day! From now on, plan on wearing you Emmett gear on chemo days, so if you haven’t gotten your shirts or wristbands yet, let us know so that we can hook you up! We just found out about these snazzy little wrist bracelets (kind of like the live strong bracelets, but awesomer) made by Uncle Gary (you rock!) and sporting the Team Emmett logo. He hooked us up with a bunch, so if you need some low profile gear, let us know and we’ll get some to you.

Love to all, pray for us tomorrow.

Operation K.E.B.

Posted by wendy on April 11, 2010

So the second round of chemo is going well. They added another anti nausea medicine that seems to be helping tons so far. Emmett was relatively pain and nausea free yesterday afternoon and this morning. He had one funny side effect, sweating profusely in his sleep that cause him to change clothes 5 times during the night last night. I think it was somewhere around 1 am that we broke down in giggles when we changed him for the 3rd time in 3 hours. I’m not sure if it was really that funny or we were just a little tired at that point. We were worried about being able to keep him hydrated. He was a little dehydrated this morning, but we pushed fluids all night and this morning, and he was very hydrated last time he checked. Tonight we head into the roughest day. Emmett has already been weaker this evening and feeling worse, so pray that we make it through tomorrow without unmanageable nausea and pain. Emmett said a few minutes ago that this is the time he really feels like he’s fighting, just to hang on.

So by now you should be wondering what operation K.E.B is. Well, the literal translation is Operation Kicking Emmett’s Butt. Emmett’s mom arrived Thursday and we’ve been scheming ways to force Emmett to do more for himself. After so many hospital procedures and operations, Emmett has forgotten that he can do things. Just the other day he said to me that he forgets that he can walk across the house if he wanted to because for so long he couldn’t. I’ve been frustrated that he continues to find excuses for not doing things as simple as sitting on the porch. I must say that Emmett’s mom and I are pretty good at scheming together, though. Emmett was out of bed about 8 hours today, and up at least once or so an hour to do small things. I can’t imagine how miserable I would feel if I were the one laid up in bed, but it’s time to motivate him. We’re not going to church tomorrow, but next week church is a requirement unless he’s in the emergency room. And beware friends, I may just get him out of the house one day and drive around until we find someone to visit.

So pray for Emmett to see pushing himself a little more every day as part of the fight. There’s nothing I haven’t already told him in this blog, but sometimes it is hard to see the other side when you’ve been through what Emmett has.

Love to all.

Wrapping up round two

Posted by emmett on April 12, 2010

So it’s sunday evening.

The chemo pump has been removed from me. so no tubes coming out of me, no needles in me, it’s kind of nice. IT has been a tremendous blessing this time around. everything went smoothly at the hospital in the chemo rooms, Saturday (first day at home) was slow, uneventful, and went by fairly quickly. And today, after a long morning nap, and some good hang time with friends and fam, we removed the pump with ease. it was nice. I spent most of the rest of the day, except for maybe one short little late afternoon nap, up in a chair, or sitting up in bed, sitting on the back porch, etc. etc.

The lawn chair we bought for the deck along with the table has been a blessing for me, and my family. we have been able to gather there around it and spend time outside together, it’s a nice change from the bedroom, trust me on that one.

Last time during chemo, we had already landed in the ER early today, alas, that has not been the case this go round. we did get a stronger anti nausea med coupled with a steroid, which we just take over the three days of treatment, and that seemed to really help. The real test will now be the next two days. Those can be some of the more downer days, and especially lacking the heavier gauge nausea meds could make that drop off seem a little more precipitous.

I greatly covet your prayers tonight as I hopefully chalk up some good sleep time, and over monday and tuesday, as I come out of some post chemo slumpage. My biggest prayer for this week is that maybe we can stay out of the ER for just a little while. I feel like that prayer is a long shot, but at the same time I think asking big things and expecting big things to happen are good, and so worth it.

Thank you for your continued walk with us through it all. It’s friends and family like you that make it more bearable, and make the road feel a little less steep. Thank you again -

Sometimes you just need a trip to the Mother ship.

Posted by emmett on April 12, 2010

So this morning the goal was to get out and go to Forks’ Drum Closet, the Mother ship of all things drum. Granted it was mainly maintenance, but still, it was good to get out, browses my favorites at the store – and of course, I have my eyes set on a new tambourine that I am currently drooling over. so while I got some productive stuff done, I also have (at some point in the future) sunk myself about $30 in the hole for this KILLER tambourine, did I mention I am in love with it?

Needless to say, it was nice to get out and do something different for a change, see some of the gorgeous trees in bloom this morning on the drive to Forks. and now I have some small drum projects to keep my hands busy for a few days – so there you go just a little update for this monday afternoon.

The Power of Community

Posted by wendy on April 17, 2010

We keep our lives busy because if we stop moving we might realize we’re standing on air.
- loose translation of Friedrich Schopenhauer based on what I can remember of my college German. It sounds much cooler in the original German, though.

I realized that healing begins with our taking our pain out of its diabolic isolation and seeing that whatever we suffer, we suffer in communion with all of humanity, and yes, all of creation. In so doing, we become participants in the great battle against the powers of darkness. Our little lives participate in something larger…. How do we make such connections ourselves? How do we make a shift from evading our pain to asking God to redeem and make good use of it?
-Henri Nouwen, Turn My Mourning Into Dancing

I don’t know about you, but I was raised on the good old American ideals of independence and isolation. You don’t trust people with what’s important, you don’t share yourself, and you never, absolutely never, show weakness. I’m not sure if I could find a more insidious and destructive philosophy to the American church.

I have struggled these past weeks. I sometimes laugh when people thank us for being so open because there is so much I don’t share; some because I shouldn’t spread the lies of the enemy, and some because I don’t want to be vulnerable before others.

Tuesday night I confessed to Emmett that I feel like I’ve been grieving my lost husband since February. In many ways, I feel like I’ve already lost him. Becoming his full time nurse has made it difficult for us to behave as husband and wife. As a small example, just the other day I asked him to research something on the internet for something trivial I needed- something he would have done six months ago without me asking. I could actually see a physical reaction of annoyance in him, and it startled me to realize that our entire behavior towards each other had changed. I told him that even if he gets better that I feel like I’ve lost him as a husband because it’s so hard to remember how we related before the diagnosis. I expected that when we were older that our relationship would naturally shift to one of us being a caregiver for the other, but it feels so wrong to be happening now.

Later I went on a walk and tried to get angry at God. I tried to get angry with him for not answering my prayers, and he brought to mind countless instances of answered prayers. I tried to get angry at him for him not loving me, and a thousand of your faces popped into my head as examples of how he has loved me through you. Then I tried to get mad at him for being so quiet, and he had the nerve to put scripture into my head. So I settled on being mad at him because he wouldn’t let me throw a proper fit, although in hindsight I think I managed to have a temper tantrum mighty enough to rival Quinn at his worst.

I realized that I keep returning to my desire to be delivered from my circumstances instead of in my circumstances. No matter how I try to hide the desire behind ridiculous logic, I really just want Emmett to get better. God being glorified in our lives is more like a bonus. Whoa. Did I just confess that? Umm. Yeah.

But why?

I love being busy and hate sitting still. In January I was working full time, attending grad school, doing some part time work on the side, and being a mom and wife. There is some virtue in working hard, but I had become a person focused on doing and not on being. Living in such a frenzy of activity is isolating. There is no incentive to share your life in community when other people are simply a means to accomplishing meaningless tasks.

Enter cancer.

Now I spend a lot of time sitting still, and just being is driving me batty. At fist it was easy to live in community because community came to me where I was. But as we began to live with cancer, I realize how hard it is to suffer in community. A while back, Quinn and I were out somewhere, and I had to leave because I was so angry I was nauseous that other people were living normal, cancer-free lives. My first impulse was to withdraw physically when possible, and emotionally when not possible to physically leave.

And yet I realize more and more what it means to be called to suffer in community. Not to make suffering the center of our community and not to force others to continually focus on our suffering, but to participate in life despite our suffering. Not to go about weeping and mourning incessantly, but to acknowledge to reality of pain and evil as well as beauty and laughter. To accept pain without either glorifying it or denying it is central Christian living. It’s not just hard for me, either. I can see it in the eyes of people around me when I go out. They don’t know how to respond to my suffering any more than I knew how to respond to others in my past who have suffered a great deal. And yet we are called to suffer in community despite the paralyzing awkwardness.

So thank you to those of you who have written notes or messages. Thank you to my co-workers, who’ve hugged me and listened to me and laughed with me. Thank you to my friends who bring me meals and take walks with me. Thanks to my family and in-laws who put up with my mood swings without complaint. Thanks to those of you simply living normal lives and praying for us. Thank you to Emmett, for seeking God in his suffering and learning to see past his pain and take care of me in small ways.

Emmett and I are learning to live simultaneously inside and outside of our pain.

This week has been good in many ways. Physically, Emmett has been a little stronger and doing more to take care of himself. Mentally, we have thus far been able to stay out of the ER. So it seemed an appropriately safe week to have an emotional breakdown. It won’t be my last, but I am thankful that we are continually held up by your prayers and love.

Chemo, take 3

Posted by wendy on April 20, 2010

Tomorrow is round three of chemo for Emmett. Don’t forget to wear your Team Emmett gear. We’ve seen some great pictures of you in your Emmett gear, so keep the good pictures coming!

Chemo Update

Posted by wendy on April 22, 2010

So we had chemo, round 3 today…

Today’s chemo appointment was the first appointment we made that didn’t have to be rescheduled because of blood counts or ER visits. He’s actually made it two weeks out of the hospital with no ER visits, and that is a huge blessing for us. It was also a huge blessing for chemo to run so smoothly today. I caught myself getting almost excited because life has been somewhat stable these past two weeks. I could get used to not sleeping in the ER. But as soon as I could feel my spirits lift, waves of anxiety would come crashing over me again. We talked at one point of how quickly our emotions change. I was reminded of the ride at Six Flags Over Georgia with the big rocking pirate ship that goes back and forth. The only time I rode that ride my friend said I actually turned an unpleasant shade of green. I feel like my soul lives on a similar ride now.

Today Emmett was still a little worn out from his physical therapy appointment yesterday. Being at chemo all day has compounded his exhaustion, and he’s currently snoozing between eating and hydrating. There was less anxiety this time around, though we both know enough now to dread the 3-5 days of intense side effects. Last round the night sweats were particularly debilitating. We’ve prepared a little better by stacking a supply of towels and changes of clothes on my side of the bed for Emmett. I am, of course, on the floor again until we remove the pump and deaccess the port. The challenge will be to keep him hydrated despite the sweats. Another common side effect that Emmett only began to experience today is the cold sensitivity. He picked up a container of water at room temperature, but water at room temperature feels cold because of it’s higher heat conductivity. His hand immediately did this weird shrivel up thing, like the nerves were all crazy. This side effect is very common and should go away in a few days, but it is particularly disconcerting for Emmett since he’s always been prone to worry about things happening to his hands and how it will affect his drumming. The final side effect we seem to be battling today is that Emmett’s nausea is spiking again. Last round a new chemo drug helped keep the nausea surprisingly low. We took that drug again today, but it does not seem to be helping as much yet. There could be a lot of reasons the effect might be delayed, but we pray that by tomorrow there will be more relief from the nausea.

Finally, we got a better picture from the nurse practitioner today about what our life will look life. Before we started chemo, we were more concerned with starting than how treatment would progress. Today we were able to talk more about the details of Emmett’s treatment. Other types of cancer often have some sort of “markers” in the blood that you can test for, but esophageal cancer has no such blood markers. The only way to determine whether treatment is working is to do another CT scan. Had Emmett not shown much physical progress, he would have had another CT scan today because it would have looked like the chemo wasn’t working. Since Emmett has had better progress this round, we chose to continue through two more cycles of chemo before doing another CT scan, which is the usual time frame for “restaging” the cancer, as they call it. As long as this treatment is shrinking the cancer, we will continue with this particular chemo regimen and schedule, going every other Wednesday for treatment. We will only take a break if we want to, and right now we are in full attack mode, so that means no break for us. If the CT scan shows that the chemo is not working, then the doctor will reassess and go from there with other possible treatment options. We have a 4th round of chemo on May 5th, and Emmett’s CT scan is scheduled for the 17th. We’ll get the results when we see the doctor on the 19th for another round of chemo. The initial assumption by everyone is that the chemo seems to be working since Emmett is getting stronger. Of course, Emmett is still on 2 nausea meds, a pain med, and tylenol pretty much around the clock, so it appears we still have a ways to go.

Thank you for your prayers, for the pictures of you wearing your Team Emmett gear, for making us laugh, feeding us, mowing our lawn, washing our dog, our car and our kid…. we are so grateful for you holding us up during this time. Today is a day where Emmett is very aware of the fight. He feels like he’s on the front lines tonight and the next few days. Pray for strength, endurance, joy, faith, and peace in the battle. I’ve been reading Annie Dillard lately. Her writing is like a cool compress to my feverish soul. Here’s a quote from Pilgrim At Tinker Creek that made me stop and think for a while:

A fog that won’t burn away drifts and flows across my field of vision. When you see fog move against a backdrop of deep pines, you don’t see the fog itself, but streaks of clearness floating across the air in dark shreds. So I see only tatters of clearness through a pervading obscurity. I can’t distinguish the fog from the overcast sky; I can’t be sure if the light is direct or reflected. Everywhere darkness and the presence of the unseen appalls.

Dillard is speaking of an actual physical experience outside at night, but I think it appropriately describes my soul right now, and maybe Emmett’s too from what I can gather of our conversations. There is a lot of fog in our lives obscuring God’s great love for us. The streaks of clarity are thin and difficult to interpret. We have no idea what the Lord’s specific will is for us, so our only choice is to trust in a love we cannot see and a goodness we do not feel. But hope that is seen is not true hope, so we rejoice that there is true hope to be found in the pervading obscurity. Thank you for helping us find that hope.

Love to all

-w-

brooding

osted by wendy on April 24, 2010

If I were a chicken, I think i’d be sitting on an egg right now. I’m not sure what that means exactly, but the mental picture reflects my mood right now.

Apparently there’s a storm brewing in Nashville. Spring storms are the best, but right now there are only threatening weather forecasts and a slight breeze to indicate anything out of the ordinary. There’s a lot more hoopla than normal because there might be tornadoes during the big marathon tomorrow. In Nashville when we make a fuss about things, they tend not to happen, so I’m not holding my breath tonight. Rain would be nice though. My garden is thirsty.

Normally we’d have the windows flung open this time of year, but we’ve been more reserved because Emmett’s body doesn’t adjust well to the drastic changes in temperature from night to day. We also like to usher in spring storms by sipping tea on the porch, but that is out of the question this evening because of the chemo.

I sat down to get thank you notes written tonight, and wrote 12 in two hours. I was even working diligently the whole time. I felt like I had accomplished a lot, and then nearly cried when I counted how many I had done and how long it had taken me. Don’t get me wrong, I actually like writing thank you notes. It’s fun to think about people you love and why you are grateful to have them in your life, but I’m issuing a formal apology in advance for not getting them all out in a timely manner. I feel like I write one note and then put two more names on the list for people I want to write. And don’t tell me not to write them. I enjoy the opportunity to reflect on how well we are loved by our friends and family. I’m just slow. Like a chicken, remember….

Emmett has finally passed out this evening. Thankfully. It was an awful day for him. His pump was supposed to finish at 3, so I took Quinn out for the morning. I got a call at 11:30 saying that the pump had ended early. He was anxious because I wasn’t there, and consequently, his nausea went through the roof. I de-accessed his port when I got home and everything was fine, but he spent the rest of the day trying not to throw up. He was out of bed today only to go to the bathroom. His one brief trip to the kitchen ended when he finally gave up sitting because he couldn’t stop retching. He calls these days his fighting days. He doesn’t like to listen to music or watch movies on these days because he doesn’t want these things to be associated with the pain and nausea. He just sits and tries not to move. He likes me to just sit with him, but it’s heart breaking to be so close and unable to help. The down side to feeling better last week is that good days accentuate how bad chemo is. When Emmett was already feeling this lousy, the chemo wasn’t anything really different. As he begins to regain some strength, the chemo becomes more difficult. I’m praying that the nausea means that unfathomable numbers of cancer cells are dying. We’ll know more in May.

We’ve been trying to make a lot of decisions lately. We had our wills written and met with a social worker. We’re also considering whether or not I should reduce my teaching load next year. There are a lot of factors to consider, and we’re trying to weigh each one thoughtfully, balancing practicality with faith. We’d appreciate your prayers for wisdom.

We spend our lives now waiting for God to work. We pray he’s working through chemo, but we know he’s working to redeem this cancer for his good because we see the evidence in your lives that God is moving. Yet we just wait a whole lot. We try to be good stewards of the waiting, praying for others and reading and writing and drinking tea, but there is a whole lot of waiting to fill up. Waiting on God is like waiting for the storm to get here. There’s a lot of excitement about the final outcome, but we can only wait, pray, and watch. That being said, I think I hear some rain outside, so I think I’ll go wait for the storm I can see coming and leave the rest to God.

Goodnight.

normal?

Posted by wendy on April 27, 2010

As we learn to live with the cancer, we’re more able to predict Emmett’s good and bad days. Chemo comes and goes, apparently with varying degrees of difficulty, and he gets about a week of almost normal life. He’s still working on regaining strength, and it’s hard to tell overall if he’s just recovering from the six weeks of torture from being in and out of the hospital or if there’s real improvement because the chemotherapy is killing the cancer. We are praying for the latter of course, but the next CT scan is drawing closer, and we’re simultaneously looking forward to it and dreading it at the same time.

Emmett has been up and about these last couple days, which has been wonderfully encouraging. We even went to a small dinner party last night, and other than not eating, Emmett was almost perfectly normal. He’s still weak and tires very easily, but he is showing a lot of progress in that department. So that brings us to our next goal – eating solid foods again. Yesterday Emmett had half of a large fry from Chick-fil-a, mainly using the fries as a vehicle for the polynesian sauce that he loves. While that was wonderful to witness, there is a two-fold hurtle to eating again that causes Emmett a lot of anxiety.

First, Emmett hasn’t really eaten solids since February. Before they diagnosed the cancer, Emmett could eat fine one day and the next day eating would be so painful he couldn’t eat anything. The stent procedure should have helped him eat, but that was a miserable failure. The doctors kept him NPO for essentially over a month. Because they expected him to be okay after each procedure, they didn’t arrange for other nutrition. By the time they realized that they needed to do something else, Emmett hadn’t eaten for almost a month. Finally, they put in a feeding tube, which has been a huge blessing because it allows us to get Emmett complete nutrition regardless of what he can take by mouth. Throughout the diagnosis process, though, we had numerous doctors weigh in on what Emmett should or should not be eating with many conflicting responses, so we’re not sure where we stand on that front. Essentially, we think Emmett can have whatever he can tolerate by mouth, but we’re not sure what that means either. We’re in the process of determining what he can swallow without irritating the tumor and what his stomach can handle given that he’s been off solid food so long. We’re trying not to add any additional irritation to his bowels, especially since the chemo kills a lot of the cells that aid in digestion. Unfortunately that means we can’t often distinguish between normal chemo irritation and problems caused by solid foods.

Second, the chemotherapy drastically alters appetite and taste buds. In addition to the increased nausea on chemo days, Emmett’s taste buds seem to be semi-permanently altered. A lot of foods taste metallic, which is a typical side effect of chemo. Emmett also has very low tolerance for cold foods, so a lot of the ice cream or smoothies he would be able to eat are out of the question for now. Finally, after not having eaten for almost three months now, Emmett has very little tolerance for spices. After eating a single steamed carrot that was sauteed in butter with a little pinch of salt until it was really soft, Emmett winced and said it was too spicy. A carrot? Yeah, that’s what I thought.

So between his altered taste buds and the fear of eating something that would irritate the tumor, we are negotiating a tough course. Currently Emmett is trying to take a little bit of real food around meal time each day. Today he had some macaroni and cheese for an early lunch and we’re planning on taking Quinn to Chick-fil-a tonight for an early dinner. Tonight will be the closest thing to a family dinner that we’ve had in over two months. I am very excited.

The good news is that there is progress in the solid food department. Overall the progress is slow, and the chemo sets us back about 4-5 days every other week. Emmett has been craving things like cheeseburgers and pizza, so that’s another good sign. Of course, the biggest obstacle to eating is the tumor, and we’ll know more about whether or not it’s shrinking in May when we get the next CT scan done.

So here’s to Emmett eating a cheeseburger again soon! Next time you bite into one, remember to pray that Emmett would be able to enjoy that sensation again soon. Much love,

w