This page (which was originally an incomplete online photo album) is dedicated to my daughter, Emily Grace, and serves as a source of information for friends and family to keep track of her return to good health. The most recent entries will be at the top, with the first entry at the bottom. Links at the bottom of each "date section" will walk you back up the page in chronological order.

See Emily's Quickie Picture Gallery for recent photos (birthday, hospital, back home, etc.)

Please email any comments you might have...we'd love to hear from you!

- John C. Straffin

NOTICE: If you'd like to be notified by email when this page has been updated, send an email to emilylist@straffin.com and I'll let you know!

Well, Emily's counts for the past two weeks (ANC of 1.2 on the 10th, 2.6 on the 16th) have been good, the last of her chemotherapy is past and (drum roll please) HER CATHETER HAS BEEN REMOVED!!! YIPPEE!!! No more daily heparin flushes, no more thrice-weekly dressing changes, no more ace bandages wrapped around her torso to keep her from messing with it... IT"S GONE!!! HURRAH!!!

(Ahem. Sorry. Got a little excited there. Where was I...oh yes...her catheter...)

The operation was a quick one with Emily under general anesthesia (applied through the catheter as its last official usage.) May you never have to experience this, but there are few things funnier than a 17 month-old coming out of anesthesia. Trying to sit up straight and failing miserably, waving and breathily lilting "Hi!" to everyone that passed. Must be what a drunk baby is like (something else I hope everyone, including myself, never has to experience.)

She's currently out of day care for a case of conjunctivitis (aka pink-eye), but after the last five months this is nothing. As I promised, there's new pictures in the Quickie Picture Gallery (new photos towards the top.) Thank you all for your letters and phone calls of support, your help with Emily's and our care, and most importantly your prayers. God is indeed the Great Physician and we know we have Him to thank for all good things, but especially for our Emily's return to good health.

It's been a long, strange trip (well, five months may not be long, but all this was certainly strange) but we've made it from tumor to boo-boo. Her next clinic visit pertaining to her having had cancer is three months from now...a far cry from weekly trips to Chapel Hill. I don't know what I'll do with all this information now...probably re-format it for easier reading and leave it up as a testament to God's will and works in our lives and the lives of those around us. I may also include a section of quotes from the dozens of emails we've received from all over the world. Check back to see what happens next. :) Until then, may God richly bless each and every one of you.

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Oop. Late again. Sorry.

Last week's (3 March 1999) counts were as follows:

• White Blood Cells = 7.5
• Hemoglobin = 11.7
• Hematocrit = 35.4
• Platelets = 189,000
• ANC = 2.1 (down from 2.7, but still good)

After a half-day yesterday, Emily went back to day-care full time today. She's having to get used to not being around a relative all the time again, but she seems to be doing well...cried a bit yesterday, did better today. She's still teething like crazy with a several bicuspids arriving on both the top and bottom. Please pray that she gets some relief (therefore giving *us* some relief. **grin**)

(Shannon writing)

Emily got her last dose of chemotherapy today. Yippee! So far, no traumatic reaction yet, but the night is still young. Unfortunately, between teething, 16-month old perverseness, and chemotherapy, nights here at the Straffin household for the past week or two have been spent more awake than any of the over-2-year-old crowd care for.

Her counts looked really good today -- she had an ANC of 2.7 (up from 2.1 two weeks ago...don't have last week's.) Her hemoglobin count looked great too, thanks to the iron supplement (which she's been taking for a slight case of chemo-induced anemia.) The recuperative powers of a baby's body (and God's grace!) are really amazing. Even though Emily won't have to go through any more chemotherapy, she's still going to see a lot of the hospital. Here's the follow-up plan:

INITIAL FOLLOW-UP

• Visit weekly for 3 weeks to check her blood
• On the 4th week, get a CAT scan and x-ray to make sure everything looks good
• If the CAT scan looks good, then we can take out her catheter--YAY! (We're not going to talk about what happens if the CAT scan doesn't look good)

• Visit every 3 months for the next 2 years (x-ray, scan, blood work)...
• Then visit every 6 months for the next 2 years after that...
• Then visit every year for the next 2 years after that...
• Then check every 5 years for the rest of her life!

We are so grateful to already be so near the end of our daily reminder of Emily's cancer. It's only been 4 months, but it feels like a lot longer. The future looks really good for Emily right now, thanks be to God! Please spare a few prayers for the families that REALLY need them -- those who have children with leukemia, where the chemo lasts for 2 YEARS or longer.

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(Well, at least I didn't wait a *whole* month between updates...)

Emily doesn't have to go to the clinic today...because we were in the emergency room until midnight last night! (Ugh.) More about that later...first the info I haven't put up for the last few weeks...

Emily has only been getting her chemotherapy every three weeks (with blood tests and the occasional ultrasound/x-ray on the weeks in between.) Her ANC counts since last time were as follows:

Date:	ANC Count
01/13/99	1.0
01/20/99	1.5
01/27/99	1.1
02/03/99	1.0
02/09/99	2.1!

Anyway, last night Shannon takes Emily's temperature and finds it to be an astounding 101.2 degrees. With chemotherapy patients, a fever of over 101 is a big deal, so it was off to the ER. After waiting around for a while, they drew blood, ran her counts (so we didn't have to come back the next day...yippee!), and gave her an antibiotic to fend off any suspected infection (we'll find out the results of last night's blood culture today, but if it's positive they've already treated it.) She'd been having problems with constipation over that last few days (a consequence of the chemotherapy coupled with iron supplements and bananas for breakfast), is getting a couple more teeth, and there's a bug going around (which I'm developing rather nicely at this very moment *cough, cough*) so everyone is pretty sure that this was just an "I have a cold" kind of fever and not an infection.

Emily hasn't been sleeping very well over the last few nights either (if she felt anything like I do know, I can understand why!) Please pray for her comfort as she finishes up her chemotherapy this month. The cumulative effects are accumulating and she seems to be more tired/cranky/achy/etc. with each chemotherapy visit. The next one (Feb 24) is the last one! We'll have clinic visits before and well after that one for blood tests and continued monitoring off and on for the next 7 years (weekly for a month, then monthly for a year or so, then every 3 to 6 months, then annually) but at least the chemotherapy itself will be over.

I should have an update up on Wednesday next week, perhaps with some new pictures! (she's getting *BIG*!) Until then...

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We now take you live to the Straffin household where Shannon Straffin is typing blood chemistry results from the day's chemotherapy clinic visit to her husband at work ...

Her ANC* was down to 1000 (from 1.8 = 1800 last week). Dr. said not to worry. 1000 is the lowest her counts can be and still get chemotherapy. Her counts will go down this week, but as long as she doesn't get a fever, he says it's no big deal. "I know parents who would pay for an ANC of 1000."
*(ANC = Absolute Neutrophil Count. Low neutrophils indicate an increased susceptibility to infection.)

There you have it...reporting live from Durham, North Carolina, this has been John Straffin for "Emily's Infrequently-Updated Treatment Status Page" on the World Wide Web. We now return you to your regularly scheduled search engine ...

(Shannon writing...)

Well, no news in this case has been good news. We have been dealing with the usual things that parents of 1 year olds deal with: teething, getting into everything, learning to self-feed, waking up in the middle of the night for a drink of water, etc.

We are over half-way through with the chemotherapy -- Emily didn't get any chemotherapy last week! Now we'll start getting chemotherapy every third week until the end of February. Her side effects from the treatments are very minimal ... to the point that we really can't tell if she's fussy because of her teething, her treatments, or her age.

We do have a couple of (relatively) minor concerns: Emily has been put on iron because she's a little bit anemic. We've also had to resort to basically hog-tieing her to keep her from pulling on her catheter (an ace bandage wrapped over the catheter, followed by a onesie and her clothes. Even with all that, she still manages to get her catheter dressing undone most days. We think she's agitated less by the catheter than by the adhesive keeping the dressing in place. Her skin is so irritated-- all red and rashy and painful to look at.

Our thanks to all who have been faithful in praying for our little girl ... we know it is the reason we can be worried about such small details about Emily's health.

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Oooo ... two weeks with no entries? I've been a baaaaaaad boy. Sorry!

Christmas was wonderful! Emily had fun tearing open the paper and boxes that held her gifts and actually paid attention to what was inside! (Although, at the same time, she also enjoyed handing her gifts to other people in the room. She's so generous! *grin*) My father and brother joined my mother (who has been here since mid-December watching Emily) and good times were had by all. (Ask me about "Emily, get out of the ambry!" sometime... *grin*) We also received an "early Christmas gift" when we found out a few days before Christmas that Shannon's father would be coming out to look after Emily for four weeks starting February 6th! If Emily's counts stay as positive as they have been, she may be able to go back to day care just after he leaves. The Lord has provided again! :)

Well ... it's late and I have to work tomorrow. I may write more after Emily's clinic visit tomorrow afternoon. Until next time...

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Emily's surgery went smoothly, with everthing taken care of (catheter and chemotherapy) by noon. Our thanks again to the doctors and nurses at UNC Hospitals (espescially Dr. Weiner!) and to God Almighty. After arriving home at around 1:00pm, we all crashed (hard) which effectively shot the rest of the day. Oh well...it's not like we had planned to accomplish anything (beyond Emily's surgery) today anyway.

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Emily's surgery to replace her catheter is the first surgery on deck Wednesday morning. We have to have her there at 6:15 AM ... oh boy. She'll receive her weekly chemotherapy (usually every Wednesday) after she wakes up from the anesthesia. Shannon knows that "this is a rather small event on the tragedy scale, and everything has been arranged and the details have been taken care of", but still can't help worrying. She says it's probably "'cause [she's] the mama." I'm okay with it (although, of course, I'd rather she still had her original catheter), I'm just not looking forward to getting up at 4:00 am tomorrow morning. Ugh. Pray for us.

My mother safely arrived here on Sunday to take the next "babysitting grandma" shift. We enjoyed having Shannon's mother here tremendously, but we're sure that Shannon's father is much happier now that she's home again. My father (and brother) will be down for Christmas, so their "separation period" won't be as great. Pray for them as well.

"See" you after the surgery...

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For the next few days, we don't have to worry about flushing Emily's catheter. Why? It's simple really ... she's pulled it out.

Yes, you read that right. She has pulled it out.

Late Friday night, after I had spent a half hour in with Emily, trying to comfort her back to sleep, Shannon went in and did the same. Deciding that Emily could probably use a diaper change, Shan picked her up and put her on the changing table. After noticing that Emily was scratching rather vigorously at her catheter, Shannon figured that the tape must have come loose and lifted Emily's shirt to take a look at it. Seeing the site with no catheter (gasp!), blinking once or twice and looking again ("Nope, still gone!"), Shannon picked Emily up and nervously paced the room for a few seconds, then laid Emily back on the table and changed her diaper. That done, she lifted up Emily's shirt again, confirming her earlier viewing ("Nope, still gone!"), picked Emily up, and paced the room some more. Then she woke me up (I was pretty much still awake from my shift with Emily, but Shannon's late-night news break shook all sleep from my head.)

A quick call to the pediatric surgeon on call told us that, if there was currently no bleeding, there was nothing we could (or should) do right now (2:00AM Saturday morning) and that either he or Dr. Wiener, Emily's surgeon, would call us in the morning. Dr. Wiener called at around 10:00AM and told Shannon that Emily will have to come back in for surgery to have another catheter put in. Time to start up the prayer chains again! :) I say this with a smiley face because (a) the surgery, in Dr. Wiener's words, is "no big deal...we do it all the time" and (b) God is good!

The surgery will be sometime Tuesday. We won't know what time until Monday, but when we know, you'll know.

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Nothing much new today...we didn't really see Emily much as Shannon and I had an office function to attend and went straight from work. What is/was news is/was last Friday. I know, I know...I should have told about last Friday last Friday. I didn't. Sorry.

Anyway, last Friday they called us back to the Emergency Ward. The blood culture from the prior evening had developed growth. What was it? They weren't sure, but rather than take chances they called us back in. Emily had another blood culture done and had some broad-spectrum antibiotics applied to combat a possible infection of her catheter. Turns out it was again nothing -- the second culture was negative, with the first attributed to an external contaminant -- but I'd rather go to the hospital and have it be nothing than keep her home and have it be something. Amen?

Tomorrow (Wednesday) is a big day at the hospital as, in addition to a double-dose chemotherapy day, Emily goes in for her first ultrasound since the surgery a month and a half ago. Expect tales of much screaming...Emily doesn't care for ultrasounds. Last time she cried herself to exhaustion, falling asleep on my lap for half of it. Pray for either (a) a calm baby, or (b) a quickly exhausted baby.

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I hate to say "I told you so," but Emily did not disappoint today.

After hanging around the 100 degree mark, Emily's fever of the past two or three days reached the magic number today -- 101 degrees. So, off to the Emergency Room we went. (Emily did at least have the common decency to wait until after we ate.) Anyway, her temperature is an issue because fever could indicate infection. In this case, there were at least two other things it could have been causing a fever -- Emily seems to be teething (drooling like a fountain and holding onto her gums) and everyone in the house (Shannon, her mother, Emily and myself) seems to have a bit of a cold. As we are not doctors ourselves, we thought it best to take her down to the ER anyway (after calling one of her doctors who agreed) and let the professionals make the diagnosis. Not surprisingly, the nice folks in the ER agreed with us (that it was either teething or a cold.) They took a look at her catheter site and took a blood culture anyway, just to be sure. (We'll get the results of the blood culture in 24 to 48 hours.)

So, Emily's just fine, we ate well (Nice job, Shan!), we're all getting over the sniffles, and we're all eternally thankful to the Lord Most High who has seen to our every need and who has not given us more than we can bear.

What are you thankful for?

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Nothing much happened last week aside from Emily's brief stint with a stomach bug on Tuesday, but I figured I'd spare you all of the "colorful" details. Emily is still acting just like any other one year old (and still has all her hair.) She has been a bit tired lately, but that may be due to either (a) excitement over Grammy being here, or (b) Daddy wearing her out roughhousing on the floor at every opportunity. I miss hanging out with her all day now that I've started working again.

Tonight Shannon had an opportunity to exercise both her medical skills and her stealth abilities. While I was at church for a Thanksgiving function, Shannon and her mom had stayed home and put Emily to bed. After 45 minutes, Shannon and Mom realized that they hadn't flushed Emily's catheter before putting her to bed. Amazingly, the two of them managed to enter Emily's room (by flashlight), pull up her shirt, cleanse and flush her catheter, and exit the room without Emily ever waking up!

The more vigilant reader will notice that I've changed the header photos. Enjoy. :) Also, be on the lookout for a Thanksgiving update later this week (something noteworthy *has* to happen on Thanksgiving.)

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More catheter "fun" tonight. I forgot to give Emily her heparin catheter flush yesterday and paid for it with a(nother) blocked catheter tonight. A "quick" trip to the UNC Emergency Room and a dose of urokinase cleared it up but, all things being equal, I'd rather have stayed home.

Other news: Shannon's mother ("Grammy") arrived safely yesterday and has settled in. I start in my new position at Duke University's Office of Information Technology (OIT) tomorrow. Thanks to an early morning brainstorm of mine, we're now mixing Emily's oral medications into her morning cereal where she hasn't noticed them at all. Yippee!

Lastly, it's been pointed out that Emily and Shannon are represented photographically on this section of the web site, but my image has escaped unshown. Well, no longer is this the case! You'll find a photo of all three of us (taken en route to North Carolina from California) in Emily's Quickie Picture Gallery. Enjoy!

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Emily's fourth dose of chemotherapy was today. I expected to be in and out within an hour or so (just like the two times before) but I had forgotten one thing. This visit fell into the "every third visit" category meaning that in addition to her weekly dose of vincristine, Emily also received her every-three-week dose of actinomycin...which also meant that we had to wait for the results of a few blood tests and the subsequent pharmacy order *before* receiving the medication and an IV dosage of anti-nauseant *after* receiving the medication. Our expected one hour "visit" turned into a four hour "stay." Oh well...it's not like we don't like the folks at the clinic (they're all very nice.) We had plenty of people to talk to and plenty of things to do (in the playroom) while we waited.

BIG NEWS: On the day care front, we no longer have to worry about getting Emily back into day care once her recovery is complete. Shannon spoke with the director of Emily's (former) day care and she told us that due to the nature of Emily's withdrawal from their program, there will be a spot waiting for her when she's done with her recovery period. Period. No "space holding fee" or anything. Praise God! Now there's only finding out what to do about the months of February and March (Emily will still be home recovering but the family options will be tapped.) Keep praying!

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The daily 2 cc Heparin flush is working like a charm. A friend of mine who is a pediatric cancer nurse at a hospital back in California says that, while she understands that every hospital's protocols are different, they flush all Broviac catheters (even infants) with 5 cc's daily. The 2 cc's are working fine for Emily though...

Even though Emily's current medical situation is far from normal, we're trying to keep everything else as "normal" as possible. This includes her physical and behavioral development. This last Saturday was her first meal of all "big people food" (a few shredded chicken strips, some french fries, and an entire container of cole slaw at Chik-Fil-A.) She loved it! She's also moved entirely from bottles to "sippy cups" with the occasional sparring match with a "normal" cup (usually on bath night, since she's ends up wearing most of it.) She's doing amazingly well...we're so proud of her.

On other medical fronts, her hair is still all intact. Her coordination is starting to get a little bit shaky (as is expected with the chemotherapy drugs she's on.) Her next dose of chemotherapy is this Wednesday (which will probably bring about the next update...see you then!)

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We've got PICTURES! Just picked up the roll of film this afternoon. Included are her one year portraits, birthday "party" photos, and the required shots of her belly before/scar after. (Don't worry...there's nothing that will affect the squeamish...)

Emily received her third dose of chemotherapy yesterday. The doctors all say that she's doing great, but that's kind of to be expected. The effects of the chemotherapy are going to be cumulative in nature and it's only been a week and a half since her first dose. She's also become the darling of the pediatric cancer clinic. Probably because most of the kids there are old enough to know that it's no fun to be sick and have to sit around in the hospital for a couple hours with a steady IV drip of medication. Emily, on the other hand, doesn't know anything about being sick and only needs a syringe or two of medication, and therefore walks around with wide eyes and a big smile, wondering what interesting item or person is around the next corner. She's oblivious to the sickness around her and brings a smile to everybody she enthusiastically waves to (which is just about everyone...yesterday she was waving to empty cars in the hospital parking garage.)

Her catheter is still acting up a bit. It's been clogged every time it's been used since last Wednesday (i.e three times.) The first time we attempted to clear it, it broke (see 10/31/98.) The last two times the clog gave way pretty easily, but we're still a bit worried about it. We've changed her maintenance program so that she's getting 1 or 2 cc's of Heparin (an anticoagulant) in her catheter every day instead of 2 cc's every other day. Please pray that there are no more serious problems with her catheter.

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Well, as is our standard practice, Shannon and I completely ignored this October's celebration of commercialism, horror, and tooth decay, opting instead to darken the front of the house (had a few rings of the doorbell anyway) and have a quiet night at home playing with Emily. Scrooge had Christmas, I have Hallowe'en. Bah humbug. (Confused? Curious? See this page for some info about Christians & Hallowe'en.)

Yesterday (Friday) we had a bit more fun of the medical variety (like we haven't had enough already.) When the home nurse came to change Emily's dressing and flush her catheter with heparin (tasks Shannon and I will be taking over soon, so keep praying!) it was discovered that the catheter was blocked. This is officially "not good," so off to the hospital we went (with a quick stop at Hardee's drive-thru for lunch. "Not good" does not equal "emergency" and besides, Emily really likes french fries!)

At the hospital, they confirmed that the catheter was blocked and attached a syringe-full of urokinase (also called "U.K.", acts as a sort of "catheter Drano") and had Emmy and I wait for about a half an hour for the UK to work. (Thankfully, the clinic has a playroom.) When the half-hour passed, the nurse tried a saline push on the catheter and *ta da* it worked, or so it seemed. To fully check the catheter, the nurse drew back on the syringe as well, and neither of us were too pleased when it filled with *AIR* on the return. A quick check showed the problem -- the catheter now had a hole in it about an inch and a half from the skin. This was getting old really fast.

After a quick clamping and phone call to the Emily's surgeon, we waited for a surgical nurse to come and repair the catheter, which according to the surgeon had only a 50-50 chance of working. The other "50" involved putting Emily under and replacing her entire catheter. Oh boy. Anyway, the nurse arrived after a while and, in a thoroughly interesting procedure (that Emily did not like one bit,) repaired the catheter with (essentially) a few tubes and some glue. The repaired catheter seemed to work great when tested, but the glue needs 48 hours to cure, so we'll see how it holds up on Monday when we get (to try) to flush it again (this time with extra heparin which, as an anticoagulant, was supposed to keep all this from happening in the first place.)

We got home from the hospital just in time to welcome my dad and *his* mom on their way to Florida (Dad driving her and her car to her winter place...isn't he sweet?) They got back on the road this morning, after what Grandma called "the best night's sleep she's had in two weeks" (presumably from seeing with her own eyes that Emily is indeed alright and not anything special about her pillow.) We pray that God will see them both safely to their ultimate destinations.

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(This "episode" is brought to you by Shannon)

Emily had her first visit to the pediatric oncology clinic today. What a wonderful place! It inspires such a deep feeling of thankfulness in our hearts. We are thankful for all the great medical attention Emily is getting, and thankful that our family is not going through as much heartache and pain as others we met there.

Thanks to the catheter poking out of her chest, the nurse was able to draw blood and give Emily her chemotherapy without having to stick her with a needle. Emily still felt the visit was a bit traumatic because she hates anyone restricting her movement, which has to happen when the dressing on the catheter is changed. Oh well. I suppose she'll get used to it over the next couple of months.

We had to give blood at the clinic today. Data gathered from Emily's tumor, her progress through chemotherapy, and her genes (including her parents' genes) will be studied to help researchers determine a cause and an even better way to cure Wilms' tumor. A couple days ago we learned that the first clinical research study on Wilms' tumor began in 1969, the year we were both born. Our entire lifetime has been spent looking for a cure for the cancer that our daughter developed. That strikes me as being deeply profound in a way I can't explain.

Overall, Emily is doing well. She tends to be more tired and more crabby than normal... but after what she went through last week, that's not surprising. Her incision is healing very well, much better than I would have expected, and doesn't seem to bother her at all. And, while she's dressed, she doesn't even seem to notice the catheter. She still has her healthy appetite, and mostly still sleeps well at night. She has the good humor to laugh when she's playing, which is probably the most wonderful sound in the world to us. It enables us to laugh along with her, despite our concerns.

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(I know, I know...I didn't enter this until the 28th, but I *thought* about it on the 27th. That has to count for something! **grin**)

A few thoughts and happenings...

• Shannon's parents returned to California Sunday. Shannon's mom will be coming back out in three weeks to help out with Emily's "home care" while she's in chemotherapy. She'll be here for a month, after which my mom will be taking over for a month. I thank God that they were both willing and able to make such a sacrifice of their time. (I'm sure I'll hear about that last sentence from both of them, but it really is a sacrifice, no matter that they come to it willingly -- almost eagerly. Alright. Definitely eagerly. Regardless, they're both giving up their time, paychecks, and husbands to come out and help us and for that we're deeply grateful.)
   
• My boss okayed my starting two weeks later than anticipated, so I will be able to stay home and take care of Emily until Shannon's mom gets here. No big change for me -- I've been home caring for her since January -- but it will be nice to have a couple more weeks with her before work starts again.
   
• Emily's been very clingy today, making any task that required two hands all but impossible. I figure it's simply her still reacting to her hospital stay. The same with her not napping very well...she'll get back to her routine soon enough.
   
• On a very interesting note, we were the subject of the sermon at at least one church this last Sunday. A great lady I used to work with back in Virginia mailed a copy of this page to her mother who passed it on to her pastor who passed it on to everyone in the congregation as his sermon. I'm inquiring as to whether or not they record the service -- I'd love to hear it and be able to share with Emily someday just how many people were praying for her during this trying time.
   
• On a more somber note, the sureness (and levity) that has been on me for the last week and a half regarding Emily's recovery (Thank you, Jesus!) was sobered a bit yesterday as Shannon passed on some very unfortunate news. The same day that Emily was diagnosed with her Wilms' tumor, another little girl, also the young daughter of a military educator at Duke, was diagnosed with a tumor on her brain stem. She passed away the following Monday (the day before Emily's surgery.) I can't help but think that, but for the grace of God, this news could very well have been about Emily, Shannon and I instead. Please say a prayer for this family, that they will find comfort and, if they're not relying on Him already, that they would seek the strength, support, and love that can only come from Our Heavenly Father. I've left out their names, etc., in the interest of their privacy, but if you feel so led, there is a memorial fund set up in the child's name at UNC Hospitals. Please email me for her name and the name of the fund.

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EMILY'S HOME!!!

After eating like a pig all day and receiving her first dose of chemotherapy with no adverse reactions, Emily was released into our care at around 4:00 this afternoon. She's looking good, tottering around the house, and acting a bit cranky...in other words, completely normal. Granted, she has a 6-inch "smile" across her midsection and is missing a kidney, but other than that she seems to be the same little girl she was a few weeks ago.

Right now, we're just hoping that Emily turns out to be one of those people who sails through chemotherapy without a hitch. We can all still use prayer with regards to Emily's chemotherapy and her day care arrangements. Thank you for everything you've all done for us -- your meals and prayers, phone calls and emails. All have been gratefully received and sincerely appreciated!

We know that God, the Great Physician, through the doctors and nurses and the moving of His almighty hand, has done a marvelous work in our daughter and to Him we give all thanks and praise.

Updates to this web page will be less frequent now that we'll only be in the hospital on a weekly basis (assuming all goes well and nothing else happens.) Feel free to check back here or email us to find out what's going on from here on out. Thanks again!

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Emily should be coming home tomorrow! We'll know more (like "When?") in the morning, but Emily should be able to sleep in her own bed tomorrow night. We're so excited! This is the silver lining on the (small) cloud however as Emily gets her first dose of chemotherapy tomorrow morning.

The beginning of the chemotherapy puts a much finer point on what really happened to Emily. She isn't in the hospital due to a car accident or to have her tonsils removed...it's cancer. She'll be receiving chemotherapy treatments every Wednesday for the next four months, with periodic x-rays, cat scans, and ultrasounds for the next seven years. As the Talking Heads so aptly put it, "This ain't no party. This ain't no disco. This ain't no foolin' around." This is for real. But, she's still alive, she's still my beautiful, playful, loving little girl and, God willing, she'll be here for a very long time.

Please continue to pray about home care for Emily. Other options are becoming available, but we still have a lot of ground (and time) to cover.

Until tomorrow...

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Emily's oncologists gave us the details on her chemotherapy late yesterday. She'll be on 2 different medications during an 18-week treatment course. They painted a fairly rosy picture of how this would effect Emily -- very different from your Hollywood depiction of chemotherapy. The biggest concerns they have regarding side effects of the drugs are constipation and a weakened immune system. We'll need to pull her out of day care until at least February, and preferably until April, to reduce her risk of picking up an infection during her treatment. The Grandmas are already making plans to come help with watching Emily, but that will only get us through Christmas. Please pray that the Lord will provide a good in-home care option that will be both good for Emily and acceptable to Emily's parents!

Emily slept fairly well last night (though her daddy didn't, thanks to machines beeping at all hours of the night!) She's up, had a bath and change of clothes, some liquids, and should be set to start drinking formula by this evening.

[Editor's note: One of Emily's oncologists who read this page (and in particular the entry before this one) pointed out to me that the oral pain medications can be administered by anyone -- I did it twice this morning -- and that they have fewer side-effects than the intravenous medications. Maybe I should have asked them first... **sheepish grin**]

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NEWS FLASH! I was (home) on the phone with Shannon (at the hospital) just now when Emily's oncologists (cancer doctors) walked in with the lab reports. The tumor is confirmed as a Wilms' tumor (i.e. a specific malignant cancer of the kidney.) The tumor was totally encapsulated with no spread to any other organs (i.e. a Stage 1 Wilms' tumor, biopsied lymph nodes came back negative.) This is the best possible news we could have hoped for. Thank you, Jesus! One doctor said that, at 683 grams (1.5 lbs.), this was the biggest Stage 1 Wilms' tumor he'd ever seen. (They come bigger, but are Stage 2 or 3.)

On the recovery front, Shannon says Emily is doing much better. She's alert, with enough presence on mind to be crabby (rather than simply uncomfortable.) She's also very clingy and waving to anyone that comes in the room. Earlier, she was laughing at her Mama's making funny faces. The nasal tube has been removed which also means her "no-no's" -- arm splint restraints -- have also been removed. This made Emily a very happy girl. The epidural has been removed, but not due to the drugs' inefficacy. Rather, the epidural was no longer in properly and was leaking all over Emmy's back. (Yikes!) They're now administering oral pain medication. With the epidural removed, the bladder catheter will be coming out shortly as well. The only tube Emily should have in her after 10 pm tonight is her Broviac catheter which she'll be "wearing" for the next six months or so. (And, seeing as she still has this thing in, why aren't they giving her intravenous pain medication through the catheter rather than orally??? Enquiring minds want to know!)

Just as we hung up, the doctors were about to talk to Shannon about Emily's chemotherapy which should be starting in two or three days. I'll find out more when I get to the hospital later tonight, but as I'll be staying overnight at the hospital (it's my turn!) and as Shannon doesn't know HTML, you'll most likely have to wait until late tomorrow morning for the next update. Sorry!

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(This morning's episode is brought to you by Shannon, the letter "J", and the number "7".)

Grampy stayed at the hospital with Emily last night (he insisted harder than anyone else, so he won the right!) We called just a few minutes ago and got a great report. Emily's worst problem last night was either the nurse coming in and waking her up to take her vital signs every 4 hours, OR the fact that she kept trying to roll over to sleep on her tummy but got tangled in all the tubes and wires. Grampy reported that she "looked like a Christmas tree with a bad light job."

She has made significant improvement in the past 24 hours. Grampy thought he might have heard her pass gas this morning, meaning that her plumbing is "waking up" after the surgery. The surgeon thinks we might even be able to get rid of the tube in her nose later today! If we do that, then we can probably also get rid of the arm restraints that prevent her from bending her arms. That would definitely make Emily a much happier little girl! We had to put the restraints on her because, in the morphine-induced itching frenzy of Tuesday night, she managed to give herself a black eye and busted up her nose a bit. Her daddy says, "She looks like Rocky!"

We are so thankful to have such an awesome God! Even through the nightmare of this past week, we feel so lucky. We know that we have a long way to go to bring Emily back to full health, but it really is amazing how much worse things COULD be at this point than they are. It is so wonderful to know that we can go to the Author and Creator of life to plead for the life of our little girl. Everything we've needed to take care of Emily -- doctors, nurses, medication, equipment, family support, and the prayers of so many people -- has been provided by our Lord Jesus. All praise to His glorious Name!!

(Editor's Note: There have been some changes made to an earlier entry, so if you're worried about being completely informed, go back and re-read "10/21/98, Part 1." Thank you.)

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Mom and Dad (Shannon and I) spent the afternoon at home, with me running errands and Shannon showering & napping. Mom and Dad (Shannon's parents) stayed with Emily, who by all reports is doing much better. The change in pain medication seems to be doing the trick (Emily was reportedly "playing" with her grandparents for about an hour! Yippee!!) She still needs her pain medications though, as she was wailing in the background when we called (about 5 minutes ago.) We're just about to head back to the hospital with dinner.

Things to pray for:

1. No more complications with her pain medication.
2. Favorable lab reports on the tumor and lymph nodes (due tomorrow.)
3. For Emily's plumbing to start working again (so we can feed the poor girl!)
4. NO INFECTION!
5. Continued prayer for any post-operative treatment (chemotherapy, etc.)

Maybe more later tonight, maybe not. Thank you again (and again and again) for your prayers. Keep it up! The Lord is faithful and He's doing wonderful things with our baby!

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The fun's not over yet, kiddies...

Shannon called home early this morning to fill me in...last night it was discovered that Emily's extreme discomfort was due to a bad reaction (effectively an allergy) to her pain medication (Morphine). In Mama's words, "Emily had a very bad night." She had gotten as far as pulling out several of her temporary lines (nose tube, and two ankle IV's) and thrashing about on all fours in her crib. Shannon had to hold her down for about four hours to keep her from doing any more damage. Emily had tugged a few times on her catheter, but didn't dislodge it (Thank You, God!) They've started her different pain medications (Bupivicaine and Fentanyl) and are introducing things to her system (e.g. IV fluid, medication, etc.) through her catheter. The nasal line had to be reinserted while her bowels are still out of commission (apparently a natural side effect of any abdominal surgery) but the ankle IV's were not re-inserted (thanks to the catheter.)

Please pray for her continued comfort while she's in this strange and sometimes painful environment.

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HAPPY BIRTHDAY, EMILY!!! After only four and one half hours of surgery, the entire tumor has been successfully removed. It had not ruptured and all surrounding tissue appears to be fine (several lymph nodes were biopsied just to sure, however.) We will not know exactly what it was or what treatment comes next until the lab results return in a few (2 or 3) days. Momma and a much thinner (and lighter) Emily are currently resting in a private room at the hospital.

Until then (and after then, I'm sure) we all could still use your prayers. Emily has more than a few tubes & wires attached to her (including a Broviac catheter that she'll have for the next six months plus) and will have most/all of them for the next few days. Her pain medication causes a histamine (itchy) response which is also making her very uncomfortable, but she's here and alive and has good prospects for making a full recovery. Please pray for her continued recovery, her comfort, and for the simplest post-operative course of treatment (i.e. minimal chemotherapy, no radiation, etc.)

Shannon is in what her mother calls "Momma-mode" -- focused and protective of Emily. She's doing a great job seeing that her daughter has everything she needs. The rest of us are hanging in there, too. We still have four to six days in the hospital ahead of us but, with God's help, we're managing.

Thank you for all of your (continuing) prayers. God has heard them all and is working in a powerful way.

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Neither Shannon nor I slept very well last night. We don't seem to feel overly worried, but methinks our bodies betray us. Emily still acts like a perfectly normal, happy, healthy baby who just happens to have a very large, oddly shaped tummy. She's such an absolute joy. Tomorrow will be the hardest, when we don't have her happy little face looking at us to tell us everything will be OK.

Surgery is a little after noon tomorrow and is expected to last about five hours. The doctors are great! Talking with us (after getting the Cat Scan today) they gave us lots of specific things to pray about:

1. getting control of the blood vessel leading to the tumor and tieing them off correctly
2. not rupturing the tumor
3. being able to get all of the tumor out at once -- which they can't do if it's grown into other organs
4. making sure the cancer (if that's what it is) hasn't spread to any other organs
5. making sure they remove ALL of the tumor
6. that it hasn't spread to her lymph nodes
7. making sure there is no infection or internal bleeding as a result of the surgery

We'll keep praying for all these things, and then for a speedy recovery from the initial operation and a strong, healthy, positive reaction to the chemotherapy. Shannon says that if this isn't going to happen, then Jesus better come and take us all home now!

Thank you for all of your prayers! By all reports (from the over 100 pieces of email we've received in response to my original messages, many from people we've never met), there are several hundred -- if not several thousand -- people all over the nation praying for Emily and us right now. It's awesome! Thank God we found out about Him before we got this far in our lives without Him or we'd be in real trouble right now!

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We took Shannon's father to church services at Duke Chapel this morning. Absolutely breathtaking. Chapel is the wrong word for it...it's one step down from a cathedral. The message was on persistence in prayer (see Luke 18:1-8), a message we all took to heart.

Photos were decidedly not fun. We had an appointment for 2:45pm, at which time Emily was fine. When we finally got into a studio 50 minutes later, Emily was tired and cranky (and her daddy was pretty crabby, too.) Regardless, we got some pretty good pictures that we'll post as soon as we get them. (I may scan in the proofs, but they're pretty low quality.)

We also celebrated Emily's birthday today. She got some clothes and some books...typical 1-year old gifts. The cake didn't go quite as expected. It was very rich (and delicious! Nice job, Shan!) and that may have been part of the problem, but mostly Emily didn't like the feel of it! She cried when she had frosting on her hands. This may sound cruel, but it was hilarious! We hadn't even considered that possibility. We cleaned her up and offered small pieces of it to her on her high-chair tray, but even those were too messy. I gave her a Cheerio (every baby's favorite) with frosting on it. She picked it up, touched the frosting, and literally recoiled in disgust. We threw in the towel, gave her a few vanilla wafers, and ate the rest of the cake ourselves.

There was at least one bright spot in the festivities...one of the books she received played music, which she started dancing to. Very cute.

The fun starts tomorrow...Cat scan at 10:30. Emily gets no breakfast and a bottle of contrast fluid when we get there, lucky girl.

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Well, Emily continues to appear to be a normal 1-year old (except for that huge lump on the left side of her gut.) Walking around, playing, laughing, smiling, eating like a truck driver. This is what keeps us going right now. Seeing her acting like nothing's wrong makes us forget -- if only temporarily -- that something is wrong.

Shannon's parents took the news rather well, immediately falling back into the "parent" role for their daughter in addition to being grandparent to their granddaughter. So as to not immediately spoil their excitement at seeing their only grandchild, we waited until we had arrived home from the airport to tell them the news. We told my parents last night over the phone, which also seemingly went well. No basket cases yet. We're either all dealing fairly well OR we're all in denial OR it hasn't hit us yet. My bet is on door number three.

As she'll be asleep in the hospital on Tuesday, we're celebrating her birthday tomorrow -- two days before the actual date. Photos at Sears (had to cancel Wednesday's Olan Mills appointment,) presents, and homemade chocolate cake (from scratch!) are the order of the day. We'll see if we can't get photos of the cake-eating/mess-making on the web site in short order.

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Well, this is how it all began... (I sent the following to a few email lists I'm on)

Hello all,

What started as a 12-month "well baby" check-up for my daughter, Emily, at the University of North Carolina Medical Center in Chapel Hill, NC, turned into a 9-hour discussion on what to do about the grapefruit sized tumor that resides where Emily's left kidney should be. She's scheduled for a CT scan (Cat Scan) Monday and surgery Tuesday (her first birthday). They will not be absolutely sure what's going on until the surgery, but from an ultrasound and other indications, we're pretty sure she has a Wilms' Tumor -- a childhood cancer of the kidney (see the following CancerNet information sheet for specifics.)

In a bizarre twist of timing, her grandparents (my wife's parents) are arriving in town from California tomorrow for Emily's birthday next week. They will end up being a much-needed source of support during this next week. Please pray for the surgeons, my daughter, my wife and I, and my wife's parents, that all would be what and where and who God needs them to be this week.

Thank you.

- John C. Straffin <><

There's plenty more to tell you...I just don't feel like saying any more right now...maybe tomorrow.

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(A nod and a wink to Mike Caouette, from whom I stole almost everything about this page's design)