Night for Nate–a remembrance

Hello, everyone!  I wanted to invite you to come and remember Nate with me and Grace on the one-year anniversary of his death–his one-year birthday in glory!  You are welcome to come to our house for snacks and visiting and then we’ll go to Wells Beach to send off Chinese Lanterns into the night sky as a remembrance of a life that shined brightly the love of Christ.  Feel free to leave a comment or e-mail me with any questions.  All are welcome!  Please bring your own lighter–and  a Sharpie marker if you’d like to write a message to Nate on your lantern.  I will be bringing the lanterns.  We would love to see you!

Snacks and visiting:

• When: Sunday, Nov. 17th, 4pm
• Where:  Jill’s house

Launching of Lanterns:

• When:  Sunday, Nov. 17th, 5pm
• Where:  Wells Beach, at the end of Mile Rd.

The Wonder Years

The Wonder Years

Well, after much discussion with iTunes, it appears that we cannot put Nathan’s songs there without a whole lot of time and money.  So, here they are for all to enjoy and share.

There are 14 songs and 3 pictures in the file, which you’ll have to download by clicking on the link above that says “The Wonder Years.”

Don’t worry, it was created by Nate’s Dad and is perfectly safe–no viruses.  🙂

Once the download is complete, you’ll need to open the zip file and extract the songs into a folder on your computer (or wherever you want them).  Then you can copy them to a CD or put them on your iPod.

Most of the songs are worship songs…written from a humble heart to an awesome God.  There are two that Nathan wrote for me:  Lead Her On (which was a Mother’s Day gift) and 12 Years (which was for our 12-year wedding anniversary).  You’ll want your tissues for those.  🙂

All parts of all songs are original–written, sung and played by Nate (yes, he sings his own harmony).  I also have the chord charts and lyrics for any of you Worship Leaders that would like to use any of these songs at your church.  The songs were written and recorded over the last 11 years, and Nathan titled the album himself as “The Wonder Years.” 

 

Thanks!

I just wanted to take a minute to say “Thank you” from the bottom of our hearts.  Grace and I have been overwhelmed by the meals, cards, gifts, gift cards, and donations to SCS.  Thank you to all who came to the services honoring Nathan.  We are so very grateful to each and every one of you for all of your kindness and prayers during this challenging time.  By God’s grace, we are doing pretty well…better than expected, I’d say.  We are surrounded by God’s love in the hands and feet of all of you.  Please continue to pray for us (especially at dinnertime when we miss him most).  If you don’t know what to pray, these verses have been very meaningful to me lately:

 ^“For this reason I kneel before the Father…I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”  Eph. 3:14-19

“And this is my prayer: that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ—to the glory and praise of God.”  Phil. 1:9-11

Operation Treehouse Surprise!

For those of you not on Facebook who haven’t heard about this yet, I want to invite you to a special event next Saturday, Dec. 8^th, 8am till dark, our house.

Grace has been dreaming of having a tree house since she was 4 years old, but we’ve never had the time, energy or resources to build one. The last couple of months, she’s been asking and asking. I think now is the time. She’s given up so many “childhood” things to take care of her Dad all these years. I would love for her to have a place, a special space, all her own to laugh and play (and cry). I know there are many of you out there with the skills.  If you are able to come and help in any way (even hauling brush or painting), please e-mail me (cmcjill@maine.rr.com) or post a comment here.  My cousin, Andrew Lytle, is planning and organizing the building and will be creating several teams of workers to complete different parts of the tree house.  We hope to be able to put it all together by the end of the day Saturday. Lunch will be provided.

Then there’s the matter of 2 little questions that everyone is wondering but no one dares to ask me:

1)  How did Nathan actually die?

Well, the brain swelling increased to the point where he was basically paralyzed and even lost his ability to talk (we used blinks and grunts to communicate!).  We went to the hospital the Tuesday before he died to get a spinal tap in order to figure out what was causing the brain swelling (the previous diagnosis of PRES just didn’t fit).  They had to admit him to the hospital and give a platelet transfusion just to do the test. Unfortunately, none of the test results came back in time to help him, and his body just started shutting down.  He wasn’t in any pain and continued to refuse any pain meds.  The last few hours when his breathing became labored, the nurse convinced me to allow him to have some dilaudid (like morphine).  Before the medicine ever made it to his room, he just stopped breathing—he really didn’t want that pain medicine!  It was such a blessing that he was not in any pain and remained peaceful and cheerful to the very end.  I’ve heard that dying of cancer can be excruciatingly painful, and I’m soooo glad he didn’t have to go through that.

2)  How will you and Grace make it financially? 

Yes, we do have a mortgage, and we did not qualify for mortgage insurance because of Nathan’s cancer.  However, the mortgage (which is reasonable) is our only debt.  Grace and I will both receive Social Security benefits (roughly the same amount we were getting while Nathan was receiving disability benefits) until she’s 16, then half benefits until she’s 18.  With my part-time nannying job, this will certainly be enough to take care of our needs.  Since Nathan was still employed by CSC (on medical leave) at the time of his death, CSC will cover health insurance for Grace and I for 6 months, and they also had a life insurance policy for Nathan.  So, you see, God has provided for all of our needs according to His riches in glory.  No need to worry.  I’m not.

Finally, you can read Nate’s biography in this week’s edition of www.theweeklysentinel.com.

And those of you wanting copies of the songs Nate wrote and recorded (which are amazing!)…we’re hoping to have those available on iTunes soon.  Look under Nate Emerson: The Wonder Years. 

Also, feel free to leave comments here commemorating Nathan’s life.  His family and I love hearing stories of how he touched your life!

The Finish Line

Well, the road runner has finished his last lap, my friends.  He wasn’t caught by that coyote, though.  He was transported into glory and is now enjoying the blissfulness of basking in the presence of His Almighty Father for all eternity.  We are soooo happy for him to finally be made whole.

Grace and I would love for you to come and celebrate Nate’s amazing life with us!  A party (a.k.a Memorial Service) will be held at 11am on Tuesday at South Berwick Free Baptist Church. Visiting hours will be Monday from 2-4 and 6-8pm at Johnson Funeral Home–26 Market St., North Berwick, ME.

In lieu of flowers (which are fading), donations can be made to Seacoast Christian School (224 Main Street, South Berwick, ME 03908), which is where Nate and I met and fell in love 23 years ago and where lives are being changed (for eternity!).. 

the long road

Yep, still Jill here typing… 

Before I get into all the details of our challenging days, I want to give you all a link where you can sign up to bring us a meal:  http://www.takethemameal.com/meals.php?t=UNKW2839  Caring for Nate has become increasingly difficult the last couple of weeks, and I really appreciate not having to prepare a meal each night.  Thank you!

At the time of my last post 5 weeks ago, Nate was making good progress and gaining strength each day.  He continued to do so for about a week, but then seemed to be getting worse and continues to decline.  The vision loss has been a HUGE problem and has gotten much worse.  We returned to the optometrist and then ophthalmologist to see if Nate could get some new glasses to help with the problem.  What we found was shocking…he could not even read the largest letter on the wall!  Legally blind is 20/200, and Nate’s diagnosis was 20/400.  The ophthalmologist said Nate’s eyes were working perfectly, so there must be a problem with the way his brain was interpreting the information it was receiving.

Next stop was to the neurologist.  We had several MRI and CT reports of the brain from Nate’s time in the hospital in Boston.  The neurologist’s first question was, “Has your blood pressure been high?”  Strangely, yes it had.  I had noticed that trend and reported it to Nate’s oncologist, but he was not concerned.  The neurologist believes that Nate has PRES—posterior reversible encephalopathy syndrome—which is basically swelling in the brain due to high blood pressure.  To bring the blood pressure down, the neurologist chose to increase the dose of Lopressor that Nate was already taking to lower his heart rate.  It’s been 2 weeks now, and we’ve been steadily increasing the dose to try to keep Nate’s blood pressure in the normal range but with little success.  Sadly, his vision has gotten even worse, and he’s often disoriented and confused. 

On Sunday, Oct. 28, he had some weakness and uncoordinated movements in his right side which got worse throughout the day.  I was concerned that he might have had a stroke during the night or something like that, and my nurse friends all agreed that I should take him to the York Hospital ER, where he as admitted.  They did a CT scan and later an MRI which showed increased swelling in the brain causing the right side problems.  Not a stroke, but not exactly good news either.  The docs at York say the only treatment is to bring down the blood pressure.  They’ve changed his meds, added new ones, increased others, but with little success.

On Wednesday, Nate had to have his feeding tube replaced yet again because it was clogged.  The nurse skipped his steroids that morning because of the procedure, AND they had accidentally been skipped the night before when the doctor wrote for a dose change.  Because of his adrenal insufficiency, poor Nate was practically comatose by noon on Wednesday when his nurse brought in the missed morning dose.  I almost fell out of my chair when I realized what had happened with the missed doses of steroids!  His body was in adrenal crisis—total shutdown mode.  What a horrible day it was, but the steroids did the trick and he was back to “normal” by around 4pm. 

Unfortunately, the feeding tube started leaking, and a culture showed that there’s still pseudomonas bacteria in there.  The GI doc came in the next morning and tightened up the tube so it would stop leaking, and we ongoing antibiotics to take care of the lingering infection.  Yes, it’s the same one from when he was in Boston…it seems his body just can’t fight it on its own but requires continual antibiotics.  He also got the sinus infection back just a few days after stopping the antibiotics he was taking at home.  I guess Cipro will be our new best friend. 

We brought Nate home from the hospital this past Sunday, Nov. 4.  He was not any better (even worse on the right side), but the doctors/nurses weren’t doing anything at the hospital that we couldn’t do at home.  Having him home is quite challenging.  His entire right side is almost useless.  He can stand only with assistance.  He has to be fed most of his meals.  He can’t go to the bathroom by himself (the ultimate humiliation for him!).  Nate’s parents have come back to Maine to help me out, and my parents are helping out.  Church friends have been coming to my rescue a lot lately, too.  J  We have a great support system, and I believe that we can make things work for him at home for the time that he has left.  God is giving us the strength we need for each day and hope for the future—different as it may be.  Nate is not in any pain, and we’re so thankful for that.  We’re still pursuing a second and maybe third opinion on the brain swelling solution, but it’s difficult to get Nate in and out of the house and car.  Please pray for wisdom for us and the doctors.

We will probably need a wheelchair ramp built or a wheelchair lift for Nate to get in and out of the house.  Please let me know if you’re willing to work on that project or know of anyone who might have a wheelchair lift to sell or lend.

Thanks for your continued prayers and support.  My biggest prayer request right now is that Grace and I would love Jesus more each day and know his love for us and not become bitter.  We’re doing OK so far, by God’s grace. 

^“To him who is able to keep you from stumbling and to present you before his glorious presence without fault and with great joy—to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.”  Jude 1:24-25

Don’t forget to sign up to bring us a meal:  http://www.takethemameal.com/meals.php?t=UNKW2839  and feel free to share it with friends.  We look forward to seeing you as you drop off meals at the house!

Where we’re at…

Jill here again…

After 3 weeks in the hospital, Nate finally was able to come home last week.
Wow…it was a long stretch! The good news is that the infections seem to
finally be under control. The infectious disease team went through at least
6 different IV antibiotics before finding one that worked. They sent him
home on a high dose of Cipro orally (and a bunch of other meds!), which
seems to be doing the trick. We’re at 13 days of no fever-and counting!

They did so many CTs, MRIs, and cultures-I lost count! We had 5 different
specialties consulting on Nathan’s case (oncology, thoracic surgery,
endocrinology, ENT, infectious disease). It was quite a circus trying to
get all the docs to agree on what should be done next! At one point, we
talked about removing the feeding tube since it was most likely harboring
the bacteria. However, the thoracic surgeon said there was no way the hole
in Nate’s intestine (where the tube was) would heal because his immune
system was soooo compromised. If the hole didn’t close, bile would leak out
causing a much bigger infection than he already had.

If his body can’t even heal a small hole in his intestine, how can we even
consider removing his esophagus? The simple answer is that we really can’t
consider it right now. Yes, Nate is definitely feeling better and getting
stronger every day. He’s taking lots of walks around the kitchen and hoping
to get outside (whenever it stops raining!). He’s eating more and getting
his tube feeds every night. But the most important part of the
esophagectomy being successful is that his immune system has to be
functioning in order to do the work of healing his body.

We have two major obstacles to face to get Nate’s immune system up and
running again: tapering the steroids (which suppress the immune system) and
boosting the blood counts. The endocrinology team at Dana Farber switched
his steroids from prednisone (once a day) to hydrocortisone (twice a day)
with the intention of tapering that slowly to a manageable amount-or even
none at all. He was officially diagnosed with Adrenal Insufficiency, which
means his adrenals are no longer functioning properly but rely on the
steroids to do their job. This makes the tapering much more delicate and
time consuming. It could take months…many months.

The low blood counts are an entirely different issue…for which we have no
answer right now. It may be that the 16 years of chemotherapy have finally
caught up with him and his bone marrow has been permanently damaged beyond
repair. Time and more tests will hopefully tell us. All of Nate’s blood
counts are low, not just the white cells that he needs to fight infection
and promote healing. I’m giving him an injection of Neupogen every day to
boost the white cell count, but it’s just not going up. It’s hovering
around 1.1 (normal is between 5 and 10). One day in the hospital, they
skipped the Neupogen, and it dropped to .9. His red cell count is also very
low, and he’s needed one unit of blood per week for the last couple of
months. His platelets are also low, but not low enough to require a
transfusion as of yet. We’ll see the docs in Boston on Oct. 18th and
determine what our next steps will be.

The most challenging health issue for Nate right now is his vision loss
caused by the diabetes (from the steroids and feeding tube formula). He
can’t read or write at all, which means no computer, either. (He apologizes
for losing touch with some of you and wishes he could email.) He can’t see
his food to eat normally, and he has to feel around to find his cup to get a
drink. Apparently, this vision loss can take months to resolve once the
sugar levels are balanced-and we’re still working on that. I’m testing his
sugar level twice a day at different times to give our local endocrinologist
a better idea of what’s going on and how to keep his sugar level under
control.

Since Nate can’t see well enough to handle his meds, I’ve become Nurse Jill.
Besides giving the Neupogen injection, I also give 10 different meds at
various times throughout the day-some on an empty stomach, some on a full
stomach, some crushed in applesauce, some liquids, some requiring blood
pressure and pulse check. Not to mention a daily sterile dressing change to
pack the incision next to his feeding tube and finger sticks… I’m a busy
girl!

Thank you all so much for the freezer meals, treats, flowers, gas cards and
money! We have been so blessed by your love and generosity! Thank you for
showing God’s love to us in tangible ways. Please continue your prayers for
healing and wisdom and strength. And feel free to continue to cook for us
if you’d like…it’s amazing how much time all that nursing requires! And
with Nate’s parents going home this weekend, I’ll be on my own. Well, not
on my own…because I have God and all of you!

“The LORD has been my stronghold, And my God the rock of my refuge.” Psalm
94:22

Hurdles

9/18/12

Jill here…I’m sure you all knew the day was coming when I would have to
write the updates. I apologize in advance–I’m not nearly as witty as Nate!

I know some of you have been receiving my daily updates on Facebook, but I
thought I should post a thorough update for those of you disconnected from
all that social media stuff. A lot has happened in the past couple of weeks
since Nate’s last update. At this point, we have some answers but still
more questions.

Nate was admitted to York Hospital 11 days ago because he was absolutely
miserable (barely able to get out of bed, disoriented, headaches and body
aches, low-grade fevers, low blood pressure, high heart rate–MISERABLE!). A
CT scan there showed that he had a sinus infection and probably an infection
around his feeding tube. The following day, he was taken by ambulance (no
flashing lights-just transport) to Brigham & Women’s Hospital in Boston
because that was where the feeding tube was put in. Over the next few days
(not soon enough!), they replaced the feeding tube with a new one, and the
surgeon also made an incision in the infected skin around the tube in order
to clean it out. Cultures of the infected area showed two
bacteria–pseudomonas and vancomycin-resistant enterococci. The infectious
disease team stepped in then to come up with a cocktail of antibiotics (he’s
on 4 at the moment–plus anti-virals and anti-fungals!) to treat these
infections. It’s been 6 days now on the full cocktail, and he’s really not
that much better (though oxicodone does help!)

Here’s what he’s dealing with daily (or every moment!):

Fevers

Even after 11 days of IV antibiotics, Nate is still having fevers of 101-102
and chills almost every night. As if it weren’t hard enough to sleep in the
hospital! The infectious disease team at the hospital is running every test
they can think of and at the same time saying the fevers are good–that means
his immune system is putting up a fight. Against what, we just don’t
know…

Fast heart rate

Nate’s resting heart rate has been around 120 for about the past
year–roughly coinciding with his anemia. The docs say this makes sense.
Since his red cell count is so low, his heart has to pump twice as much
blood to get the oxygen his body needs. However, over the past few weeks,
his resting heart rate has been up in the 140s and even higher with any
exertion (coughing, standing). They’re now giving him meds to lower his
heart rate but still haven’t figured out the “why” of the problem.

Low blood counts

In addition to the red cell count being low (he’s had 2 transfusions in the
past week), his white cell count is also very low. They have been giving
him neupogen injections daily to boost those counts. His platelets are also
very low, but he’s not bleeding anywhere and hasn’t yet needed a platelet
transfusion. These low counts are also frustrating and unexplained because
he hasn’t had any chemo in the last 6 weeks. His bone marrow has been
through a lot over the past 16 years, but it has never taken quite this long
to recover.

Prednisone tapering

You might remember that Nate has been on low-dose prednisone for years now
to treat radiation pneumonitis and since January, he has been on a high dose
(50mg daily) as part of his chemo regimen. No doubt, this has decreased his
body’s ability to fight infection, and who knows what else it’s doing. The
docs are working on tapering this down slowly, but since he’s been on it for
so long, his body is having a hard time adjusting itself.

Diabetes

Almost immediately after receiving his tube feedings (Aug. 17), Nate started
having vision problems–more than what he had previously from the mini-stroke
last year. We mentioned it to several doctors, but no one had an answer and
recommended he see an ophthalmologist. While we were waiting for the
appointment, I noticed on his blood work report that his glucose was high
(192-normal is 70-100). We requested some glucose testing and determined
that Nate does have diabetes–a combination of the steroids he takes
regularly and the new formula being used in the tube feedings being so high
in sugar. The ophthalmologist confirmed his vision problems were due to
large fluctuations in blood sugar. The nutritionist here does not want to limit his diet to a diabetic diet because he needs all the calories he can get. So, Add finger sticks every 6 hours and
insulin as needed to the list of things we’re dealing with…

The BIG surgery

Will the esophogectomy happen? We just have no idea at this point. Nate’s docs are still hoping to get rid of that esophageal cancer, but he has a whole lot of recovering to do before that can happen. The prednisone has got be much lower, the blood counts much higher, and his strength and stamina built up. We just have to wait and see. I truly believe that God will give us a clear direction if and when the time is right for the surgery.

Needless to say, Nate is pretty discouraged (and a little grumpy!) that he’s
still not feeling much better. The nurses are getting him to take walks
(with a walker) twice a day, and he’s trying to eat as much as he can during
the day. I’ve been staying with him at the hospital as much as
possible–trying to alternate every few days with my in-laws (unfortunately,
they’ve been sick the last few days and unable to visit). Grace and I both
stayed in Boston over the weekend (at a hotel)…it was nice to have our
little family together for a couple of days, even if it was in the hospital.
I’m doing OK most days…trusting God to give our family the strength and
peace and joy to make it through each day. Grace is doing OK, but needing
lots of hugs lately. I’ll take every opportunity I get before she becomes a
teenager (in 22 months)! Nate’s parents have moved in with us to help out,
and Grace loves having them around.

Lots of people have been asking how they can help…there’s not that much to
do right now. Grace is being cared for by Nate’s parents. I’m only home a
couple of days at a time, and I’m never sure when. If you’d like to make a
“freezer meal” for us, that would be great. Label it with the contents and
the date, package it well for freezing, and e-mail me to schedule a drop-off time with me or my in-laws. Gift cards for nearby restaurants (near home or near the hospital) would be
great. Also gas cards (Cumberland Farms/Gulf is my favorite) would be helpful.
Come visit me (not Nate!) at the hospital…it’s always nice for me to get
out for a couple of hours and chat with friends. This week, I’ll be in
Boston Tues, Wed, Thurs. Of course, flowers (from your garden!) and treats
are clinically proven to cheer any girl up! (none of either for Nate,
though, because of the compromised immune system and diabetes) Truthfully,
whatever God is laying on your heart…we will receive it as a gift from
Him.

Of course, we beg you to continue your prayers for us. Right now, we see
through a mirror very dimly, and we see only in part. It’s hard to struggle
through and wait for the other side of this, to wait for when we will understand
fully. (1 Cor. 13:12) But we know that God is good-He was yesterday, He is today, and He
will be tomorrow. I’m putting all my eggs in that basket.

Moving Forward

As always, thanks so much for checking on us and offering your support. We know you all have your own life challenges, too. So, it’s very humbling when you take the time to think of us and check-in.

Feeding Tube
Step one in our esophageal cancer treatment plan is done. I had the feeding tube installed two weeks ago, and have been using it during the night. It needs to run for 12 hours a day in order to get the amount of calories necessary. We’ve also been putting some of my supplements directly into the tube, which saves me some swallowing. So far, so good. It’s more work, but it saves me having to eat when my throat is too painful. I’ve been trying to learn how to do it all myself, but as you can imagine, Jill has been a wonder at taking care of me and helping me adjust. My parents also arrived from Florida and are helping out in all sorts of ways. I am a blessed man to have so many caring people around me.

Hospital Stay
After getting the feeding tube, we apparently went home from Boston a bit too soon. I ended up in the local ER with a 104 temperature a day later. As usual, we’re not sure why, but after a bunch of IV antibiotics and steroids, the fevers subsided and I got to go home (4 days later). I still need to stay on Tylenol around-the-clock in order to keep the fever from rising, but I suppose I shouldn’t be surprised, as I have two active cancers currently untreated. I’m slowly building up my stamina again, trying to walk around our driveway a few times a day . I’ll need all the strength I can muster for the upcoming surgery on my esophagus.

The “Big” Surgery
During the feeding tube insertion, the surgeon poked around inside my abdomen and found that there was a lot of scar tissue from a previous surgery. In fact, he found that my stomach was actually attached to my liver–and a few other things. This will make it more difficult to pull up my stomach and attach it to the healthy section of my esophagus, but he’s still willing to try. If he gets in there and finds that it is impossible, he would have to remove part of my colon and use that in place of my esophagus. He also discovered that the tumor in my esophagus is 10cm, so removing that (and a little extra to be safe) won’t leave very much healthy tissue to attach to on the top end. All of this is way more than we bargained for. We’ve tentatively scheduled the “big” surgery for September 26. I’ll check into the hospital the night before. It is a MAJOR surgery, averaging 10 hours to complete, barring any complications. The surgeon was clear that there could be any number of complications, but since this is our only treatment option, we are going to go for it. He expects me to need at least two weeks in the hospital afterwards, as any number of things can go wrong with the work done on the inside and healing will take longer for me with my beat-up body. Some people recover and go home sooner, so we’ll hope for that.

As I mentioned in the last post, this is new territory for us. Over the years, we’ve been accustomed to difficult, but tolerable treatments for the Hodgkins. However, this new cancer requires more drastic and risky treatment. So, here’s where I admit that I’m scared. If they brought me in today for the surgery, I would be quite skeptical about my chances of recovering, considering the shape I’m in. That’s why I’m working on walking each day and taking all my supplements to get in shape for it. We’re hoping I improve each day and gain strength and feel more physically prepared for the surgery before it arrives. We aren’t 100% decided about the procedure. As the surgeon said, I can always bail out right until the point they put me to sleep. If I don’t do the procedure, his best guess was I would have about a year or so, which would be unpleasant, of course. I honestly don’t have much “fighting spirit” to intentionally walk into something this difficult. But we’re praying God will use the next few weeks of exercise and enjoying the late summer weather to rejuvenate me and provide as He always has.

We know you’re all willing to do whatever you can to help, whether near or far. Thanks for being on our team. It is a huge blessing to us. I will try to post again when we’re closer to the surgery. Take care…

Twists & Turns

(If you’d like to continue on the journey with us, please make sure you sign up to be notified when I post an update. Just use the “Follow” button at the bottom of the page. To simplify things on my end, I won’t be sending out an e-mail each time I update anymore.)

Ok, let’s get to it.

It turns out that my swallowing troubles are being caused by esophageal cancer after all. There was also a yeast infection that exacerbated the problem and clouded the true diagnosis, but it is not the primary problem. While Jill was in India (yes, she’s safely home now, thanks), I had another endoscopy and biopsy that more clearly revealed the E – cancer. Since then, we’ve had a few appointments with my new G.I. oncologist at Dana-Farber, as well as a thoracic surgeon.

The first step will be to get a feeding tube placed into my stomach to help me get the calories I need to maintain my weight, since I’ve lost quite a bit recently. My esophagus has narrowed to the point where I can really only get down liquids. So, in a strange way, I’m looking forward to this procedure. It’s scheduled for this Wednesday and I should be there for a few nights afterward.

The next step looks like it will be an esophageal resection, where the cancerous portion of the esophagus is removed and the stomach is pulled up and reattached to the remaining esophagus (see image below…if you’re brave). While the surgeon is placing my feeding tube, he will also do an endoscopy and bronchoscopy to check things out and see if the resection surgery is possible. Due to my past radiation treatments, there may be internal scarring that would make the resection surgery complicated and perhaps not safe to attempt. He was very clear that it is a major surgery with significant recovery time and my medical history increases the likelihood of complications. However, he still feels it is the best chance for a cure.

All this sounds like a lot of fun, doesn’t it? I have to admit things are a little more intense around here lately. We’re used to the Hodgkins being a slow-growing cancer that we’ve been able to “maintain” over the years, but this new type requires more drastic action and were not sure my worn-out body will be able to withstand the surgery and recovery. So, we are taking things one step at a time, as they say. First, the feeding tube. Then, we’ll see if the surgery is possible and if we want to go for it. We are trusting God to make things clear as we consider these decisions.

As you can imagine, it’s been great to have Jill and Grace back from their summer travels. Jill will have her hands full with school starting again soon for Grace and traveling back-and-forth to Boston to visit me in the hospital. (If you know of any places for her to stay, especially near Dana Farber, please let us know!) My parents will also be coming up from Florida to help out, which will be very nice.

Sorry this update doesn’t have my usual theme tying it all together. You should probably expect this sort of “leaner” update for awhile. As a closing attempt to pull from current events, you could say the next few months will be an Olympic sized challenge for us, so we appreciate your prayers and support more than ever.

Never a Dull Moment

(Disclaimer: I’m writing this using a voice-to-text app. It spares my tingling fingertips and catches spelling mistakes from my damaged vision. It’s not perfect though, so pardon any typos.)

Can I start by saying that I love you guys? You always leave such encouraging comments. It’s incredibly motivating to know that we have caring people behind us, rooting us on. It really is an unbelievable privilege to have you all on our team.

Also, before I forget (again), I have to submit a vote for Jill as wife/mother/caregiver of the century. She is an amazing and indispensable part of my life. Jill puts up with…

– my “helping” with dinner and getting the recipe all wrong
– asking me a question and I mean one answer, but actually say the opposite
– doing all the house/yard work, while I snooze on the couch
– calming my paranoia about spending money, even though she tracks an excellent budget

Granted, I imagine some of you are already thinking “that’s no different than what I do around here with my lazy, good for nothing…” But, I have to add a few things like…

– Seeing the daily details of my physical struggles as no one else can for the past 16 years
– Shining her ever present smile, bringing hope to the dark moments
– Being an excellent model of love, faithfulness and selflessness to our daughter (and myself!)

When she says “I love you”, I have no doubt.  She has proven it day in and day out in very tough circumstances. I’ll stop there before I run out of ink for the actual update. (Hey, maybe this will earn me some credit toward celebrating our upcoming wedding anniversary…)

Hodgkin’s Improving

Good news – the Hodgkin’s is still responding to the chemo. A scan showed that most locations have improved, although it’s still active in some spots. So, I’ll keep popping the chemo pills for now. I needed a transfusion a few weeks ago for a low red blood count (Thank you, Red Cross donors!), and I’m currently taking a break from treatment due to a low white blood count that was essentially zero, but overall it’s been a tolerable chemo, for which I’m very grateful.

Pain in the Neck (esophagus, actually)

Not quite so good news – a new medical challenge has come along (in case we were getting bored with the usual ho-hum Hodgkin’s routine). I’ve had intermittent swallowing trouble for the last several years, but it has recently flared up quite a bit. That’s not very helpful for things like taking pills and eating. My GI doc expected to do a routine dilation of my esophagus to stretch things out a bit. But, the procedure revealed a concerning growth. The initial biopsy report came back as “worrisome for esophageal cancer”. While we weren’t happy to hear that, we weren’t totally shocked, as that often occurs in people who have had radiation treatment in that area.

The next step was to do an endoscopic ultrasound to gauge the extent the growth. But, since the first endoscopy just a week earlier, it had grown even further and the doctor could not fit the ultrasound camera in. Thankfully, he was able to take several more biopsies. While we waited for the results, the pain in my throat was increasing. And with Jill leaving for India in only a few weeks, you can understand that we were anxious to come up with a plan.

This second biopsy report came back with a new and encouraging twist – the cells appeared to be primarily Candida Esophagitis (i.e. a yeast infection). Strange, I know, but the meds I’m on and my sub par immune system make me susceptible to this. The good news is that it is treatable with common anti-fungals. The pain has improved quite a bit and although my esophagus is still very narrow, I’m able to eat more comfortably again.  It still takes me twice as long as most folks to chew my food enough to swallow, but meals are meant to be enjoyed.  Why rush through them, right?

The report did also mention a large number of other abnormal cells that are still suspect for cancer. There are five doctors involved at the moment and most of them are concerned about that possibility. So, we’ve tentatively scheduled another endoscopy in early August to take another look.

Blessing or a Curse?

Spend much time pondering the meaning of these ups and downs in each of our lives? A friend of mine recently ran across a short story that sums up my thoughts on it. You can read it here when you have a minute.

Bottom line: Only God knows.  But, we’ve found time and again that we can trust him. As Jill and I celebrate our 16th year together this month, we can honestly say God has truly blessed us with a wonderful life. It may sound strange, but despite the ongoing trials, we are more confident than ever of his help and comfort.

Jill and Grace Travel Abroad

Tomorrow, we send Grace off to Florida to visit my parents for two weeks. She’s really excited. Have I mentioned how quickly she’s growing and what a blessing she is to us? Then, on Thursday, Jill heads to India for three weeks. Needless to say, she’s really excited, too! Don’t forget that you can follow her adventures on her blog.

OK, I think that’s it for now. Once again, thanks for taking the time to read and for all you do to support us.

Until next time, enjoy the rest of the summer!

2012 Bi-annual “Emerson Family Vacation”