July 31, 2011

Jen and I just closed out a July for a lifetime watching Apollo 13 with Shannon and Erin.  The house is quiet again - everyone asleep but me as I sort through so many thoughts and feelings from a month that began with so much fear and turmoil but closes with such gratitude and hope.

Shannon's birthday weekend culminated with a blowout backyard brat bash that was full of laughter and joy!

A month that started with IV infusions ended with cake and cousins and aunts and uncles and both sets of grandparents gathered together in celebration of a milestone and a remarkable turnaround.  Our support teams - the Harkins and O'Hara families - continue to rally around us.  That has remained a constant and we are so grateful for that.

Shannon's 13th birthday trip to San Fran (she returned to Rochester Saturday evening), our time together with Erin and our weekend reunion and birthday party has us all feeling fortunate to have so much love in our lives.

At St. John's Sunday morning, we felt the love as well with close friends in pews all around us.  The girls giggled their way through the worship.  There was a day when we would have given them dirty looks for squirrely behavior during mass - but that's all changed.  Giggle away.

August starts with blood labs and a check up with our team in hematology.  Shannon's energy levels are always an indication of how her blood counts will read.  And right now she is full of steam and intends to participate in both golf league and her conditioning class Monday.  We expect that the doctors will recommend a tapering of the steroids that helped stabilize things over these past few weeks.

The steroids work magic to tame things around the tumor - they also do a number on Shannon's complexion.  She's ready for a decreased dosage of Decadron.

I suspect August will be a blur as well as the school planning, shopping and sports sign ups are already underway.  We get a week at Lake Hubert.  We get to be together.  Time...we get time...we have time.  We will enjoy.  One day at a time.

July 29 - Birthday Girl

Shannon is 13 today. As we've written before, milestones are tough. Reaching one makes you think about the next one, and that's something we just shouldn't do. So, celebrate today and stay in the present.

Shannon is loving her adventure and with all she's been through these past four months, she deserves some joy. From the sounds of it, Grandma and Papa are loving it, too. Yesterday took them to Alcatraz, Market Street, and across the Golden Gate Bridge for dinner in Sausalito. Today they've scheduled a cable car tour of the city, then off to Oakland to see the Twins play. They'll be home tomorrow. Can't wait ...

Thursday July 28, 2011

All is well on the birthday trip. The flight went smoothly - no issues with nausea for Shannon and she enjoyed the complimentary hot dog and chips on the Sun Country flight. She is keeping Dan an I informed of their whereabouts via text. Dan and I were chuckling last night because Shannon was sitting on the wharf enjoying some pasta with Grandma and Papa, but she kept texting us for updates of the Twins score in Texas! I told her to quit texting and enjoy the view.

We passed our day away quite nicely as Erin and I tagged along with Dan on a business trip and that gave us a chance to take in the Minnesota Zoo. Erin liked showing her dad around the place on his first time there - the dolphin show and bird show were highlights. Erin enjoyed some one on one time with us and we laughed a lot.

Our anxiety regarding Shannon's trip has been replaced by contentment and joy, especially as we see pictures of Shannon in San Fran. The smile on her face says it all. Today Erin, Dan, and I will stay busy again with some shopping to put the finishing touches on Erin's room redesign while Grandma, Papa, and Shannon head to Alcatraz...

Good to go

Quick update: Shannon's weight check was good - She's almost back to her original weight, and blood counts were great - all were well inside the normal range. Operation Birthday Trip is a go!

Sunday July 24, 2011

A busy week is almost behind us and an eventful week is ahead. This past one was filled with more appointments than we'd like, but the results were mostly good, so positive overall. Shannon's energy is bouncing back now 9 days after the first round of maintenance chemo. She fit in some time with friends, some golf, and even a little open skating. Erin has had some summer fun, too. In fact, I am watching her and her friend swim as I write.

In addition to our hematology appointment, the girls had their dental check ups as well. No cavities and the only change is a new toothpaste prescribed for Shannon to use since radiation can affect the enamel on your teeth. Our dentist was well aware of Shannon's fight and even requested one of the Shannon the Cannon bracelets that she'd seen on several of her patients.

Added to those two appointments was a hearing test and consult to check on Shannon's left ear which has been bugging her. No sign of any infection or obvious problem and her hearing is excellent, so it's most likely just another side effect of tumor related changes in her head. The doctor was able to put Shannon's mind at ease that there is no reason not to swim - or to fly. Speaking of flying...

This Friday, July 29th, Shannon will turn 13. A milestone. Over a year ago, Grandma and Papa Harkins proposed an idea they had for their four grandchildren: each grandchild gets to plan a special birthday trip to take when they turn 13. Just the grandchild, Grandma, and Papa to a destination of the child's choosing - within reason. (Funny side note - cousin Jack may need some explanation of "within reason". He's only eight, but he's thinking that for his 13th, Grandma and Papa will take him to Spain to see a bullfight!)

Shannon is the oldest, so she gets to go first. Shannon decided back in February that she'd like to see the Twins play an away game and it just so happens they are out in Oakland on July 29th. Oakland isn't a great destination, but the city across the bay certainly is. So, a trip to San Francisco was planned. Mind you, this plan was hatched before Shannon got sick. There have been many sleepless nights for me, Dan, Grandma and Papa as we tried to figure out how best to carry out this birthday wish. Should we all go? Should we postpone? Would Shannon be healthy enough to travel? Why did something that was suppose to be a great gift now become something that was causing great stress? We've spent weeks avoiding talking about it, so unsure if it would even happen.

In the end, Shannon decided for all of us. She doesn't want our entire family to come - she wants her trip, just like she had planned. Her own special trip. She wants to tour Alcatraz, see the Golden Gate Bridge, shop on Fisherman's Wharf, and watch the Twins play on the road. Shannon knows she may tire easily, but she's planning for down time when she needs it and early bed times if necessary. Papa assured her that an early bed time is not a problem for him! And, knock on wood, Shannon's health is good enough right now to go and enjoy it. So grateful for that. So, today she began preparing by painting her nails, updating her iPod, and going over the list of meds she'll need to take on the road.

Monday we see Dr. Rodriguez for a blood check and weight check. Barring any changes, on Wednesday Shannon, Grandma, and Papa will be off on their adventure. When she returns on Saturday, Shannon will be a teenager ...

Friday July 22, 2011

I have been struggling a bit this week.  I have been irritable and intolerant and just overall under confident.

The Bloomington Lincoln class of 1981 is gathering tonight in Minneapolis and I chose not to attend.  Based on the events of the last three months, I just don't feel up to it.  I had a ton of fun in high school - no doubt it was a great phase of my life. I graduated with a class of over 500 and have remained in consistent contact with only a handful of my classmates.  I would certainly like to see many of these people.  I just don't have the energy to tell our story over and over.  I know there are plenty of my classmates who have been through challenging situations and could lend support.  Like we've noted many times - people everywhere face really big stuff all the time and come out on the other side.

 Maybe that's gnawing at me.  Shannon told me "you can't please everyone".  That remains a constant challenge in this current phase of our lives.

Another possible explanation for my irritability is that my physical fitness has been slowed by the extreme heat.  I suppose I could be out there at 6:00am, but even then the humidity has been so aggressive that it doesn't feel very good.  It's better today.  I got a walk in this morning and then just took a bike ride with Erin.

No doubt, my physicality is tied to my serenity.  It's true for all of us in our house.  In fact, Shannon is starting to sound out her plan to get back in shape.  Today, she is back at the Rochester Athletic Club for her Speed, Agility and Quickness class.  She wants to shoot pucks...she wants to hit golf shots...she wants to get stronger.  Next week she turns 13 and at the RAC if you are 13 you can work out on the fitness floor without restriction.  So she's talking about that stuff.  Getting her head wrapped around getting ready to play sports which is great.  That makes her happy.  We just have to temper her enthusiasm and keep the pounds on.  More breakfast shakes. 

So let's pray for more moderate weather so we can all get back outdoors!

Tuesday July 19, 2011

We have been experiencing some unprecedented heat and humidity here in Minnesota with a record setting dewpoint and heat index yesterday. It's the kind where your glasses fog up when you go from inside to out. On top of that, Shannon was still under doctors orders to take it easy. Yet Monday, we couldn't help but loosen the reigns a little. We let Shannon play in her nine hole golf league with her friends early in the morning. It's something she's been wanting to do, and this was the first Monday that we've been home and she's been healthy enough, so we said ok. Then, we had the opportunity to go see the Twins play from a suite a Target Field thanks to one of Dan's customers. So, we thought, what the heck, there's AC in the suite, let's do it. But, after the game, walking to the car, and starting the drive home, Shannon's cheeks were bright red and it made us wonder if we had made a mistake. She can't afford to lose weight or get dehydrated. We made it home and laid low the rest of the evening, all of us a little nervous for today's weight re-check.

But, the weight check was good. Shannon put back on the weight she'd lost last week. All that forcing herself to eat has been working. Shannon's been dealing with the reality that all the drugs she's needing to take have affected how she feels, but she still needs to eat. She's not "sick", but she doesn't feel quite right. Her stomach feels unsettled and her energy isn't what she'd like it to be. She's tired early at night, but can't sleep in late. This is just how it is now, and while it bums her out, she's coming to terms with it. When she's tired, she goes to bed. When she wakes up early, she has cereal and watches Sportscenter while she waits for the rest of the house to awaken. She tries to snack all day and she keeps track of when it's time to take her meds. She's taking ownership and control because she does not want to be babied.

I, of course, want to baby her in the worst way. The maternal instincts are strong. I wish I could take it all away and make her be a happy go lucky teen, enjoying a summer of late nights, sleeping in, playing hockey, and sunning at the pool with friends. The truth is, we all have to accept and try to enjoy what she can do right now and not lament the things she can't.

Some good news on that front today as Dr. Rodriguez was pleased with Shannon's checkup and gave her the go ahead to increase her exercise a bit. So tomorrow we're off to the Athletic Club to give Shannon's Speed, Agility, Quickness class a try. This is another activity that has been on Shannon's wish list, so being cleared to give it a go feels like progress. I hope Shannon can enjoy the opportunity to be out there and not be frustrated by her limitations. It's all part of learning to live with her disease. For all of us...

Sunday July 17, 2011

I hate to admit it but me being away again on "business" has helped to steady the ship.

For most of Shannon and Erin's lives I have traveled for work. Usually, a couple nights out most weeks. The girls grew accustom to Dad's trips - Jen also settled into a routine with me on the road.  Our household would invariably benefit as Mom always found it easier to complete "work at home" projects and activities with me gone.  There was a certain balance to that routine that has been missing since Shannon's diagnosis April 15.

Business travel can be brutal - some weeks you wonder what the heck you are doing.  If you are a customer-facing representative of some company your office is often times a Hampton Inn in Duluth or a Courtyard by Marriott in Normal IL.  But if this is what you do and you are good at it and you enjoy making deals and growing business you endure the travel because that's what earns you the medium-sized bucks.

However, the best part of going on business trips is coming home.  The kids are excited to see you.  The wife can't keep her hands off you (OK, that was a stretch).  Overall, there is a freshness each and every week.  Absence always makes the heart grow fonder.

When I returned from my trip late Thursday it was there again.  That feeling that you are home again and all is right in the world.  And, my goodness, had they been productive.  A trip to Ikea gave Jen many assembly projects to piece together and the girls got to play "Design on a Dime" with their rooms.  And the upgrades turned out great.  The girls were excited!

So it was a good week. And Shannon looked great.  All you have to do is take one look at her big brown eyes to see how she is feeling.  That was noted on Friday when we were in to check Shannon's weight which was down marginally - but Dr. Rodriguez said all you have to do is look at her to know that Shannon is back. 

Still we were ordered to rest up - stay out of the heat - and continue to build Shannon's strength.

So this weekend that gave us license to sit around, eat and watch some great sports drama together.  The highlights included another Irish win in a major - Darren Clarke's triumph in the British Open.  The Twins taking three-of-four from KC to pull within 5 games of 1st.  And the event all of us were most excited to watch - the US Women's World Cup soccer loss to Japan in PK's.  Shannon watched over at her friend Megan's.    Jen, Erin and I watched together at home and couldn't help but smile at the joy on the faces of the Japanese players.  Truly, that country needed the pick me up that the World Cup title provided them.

The perfect song for the mood is now playing; From Norah Jones album Feels Like Home...What am I to you?

I've attached a couple photo's from last week's business trip.  Some of these trips are better than others.

Saturday July 16, 2011

The Shannon room remodel turned into quite a big project and had an offshoot project break out in Erin's room as well. It's consumed the last few days, but it's been really fun. We're hoping to put the finishing touches on them today...

Some good news, some bad for Shannon yesterday. First the good - the first round of maintenance chemo finished last night and Shannon's excited to have a few less pills to take. We'll see if the Temodar catches up with her next week, but so far so good. The bad news - her weight dropped 4 pounds this week and now she's got until her Tuesday weight re-check to put a few pounds back on or they will start her on another drug to stimulate her appetite. She does not want that and told Dr. Rodriguez, "I know I can eat more!" I feel a little responsible since I was a single parent while Dan was away last week. It seemed like we were eating plenty, but apparently I wasn't as diligent as I needed to be. Shannon's appetite is a tricky thing right now - she needs to eat even when she's not hungry. Basically, she needs to graze all day long ...

So as I write, she and Dan are at the grocery store loading up on food. Shannon's energy and attitude are good, so I'm hopeful that she'll put her mind to it and gain the weight back.

Wednesday July 13, 2011

This week is moving along just as we had hoped it would. Both girls have been spending time with their friends, and Shannon and I have also taken on a project - redecorating her room. I was covered in paint from head to toe today. Tomorrow we shop for accessories!

The maintenance dose of chemo is going fine. We wouldn't necessarily expect any side effects this soon, so we'll keep our fingers crossed. We have an appointment on Friday to check Shannon's weight again and hopefully get clearance for more activity next week. Today she and her buddies watched the Women's World Cup and then walked to Kwik Trip for ice cream. That was the most activity she's had in two and a half weeks and it definitely tired her out a bit. It's going to take time to get her strength back.

Now that we are home for a few weeks, we are having meals delivered again. It's such a kind gesture and it frees us up to enjoy our days since we're not spending time preparing meals. (If you know me, that last sentence made you laugh because I never spend time preparing meals. Never. Seriously. Thank goodness I have a husband that can cook!)

So today we: entertained friends, painted a bedroom, assembled and installed a closet organizing system, mowed the lawn, and ate a turkey dinner complete with stuffing, mashed potatoes, and gravy! An all around good day ...

Appointment update - 7/11

Shannon had her return visit to Hematology today and, by following her doctors orders to eat and rest, she put on 7 pounds in 6 days! Dr. Rodriguez was happy to see Shannon bouncing back and looking more like her old self.

So, Shannon was pleased that Dr. Rodriguez gave her a little more freedom to enjoy these summer days. Shannon needs to take it slow, meaning no strenuous activity yet. Unfortunately that means no hockey camp or speed, agility, quickness class this week. But, she can take the dog for a walk or hang out with her friends, and hopefully be ready to play in her golf league by next Monday.

The other news out of today's appointment is that Shannon was given the go ahead to start the maintenance dose of chemotherapy tonight. As we've mentioned before, the protocol is 5 days on Temodar (chemo) and Kytril (anti-nausea), then 23 days off for 10 cycles.

Shannon will also continue taking the steroids as they have helped with the headaches and head pressure she was experiencing. Dr. Rodriguez wants to be very cautious. So, even though Shannon doesn't like the restless feeling the Decadron gives her, tapering off the steroids will have to wait until at least this weekend, and then it will be a slow process.

All in all, a positive report today and our spirits are good. Tonight Shannon and I made a list of the pills she needs to take this week. We're off and running with the next phase of treatment ...

Sunday July 10, 2011

Grandma took a turn hanging out with the girls last night so Dan and I could take in some live music at the St. John's Block Party. We enjoyed local Twin Cities favorite Jeremy Messersmith whose style is self deprecating and quirky, but the highlight was definitely the energetic and engaging Eric Hutchinson. He's charismatic and young and talented - what's not to like? My personal favorite is his song Oh!: "We get lost in the back of our minds ... everybody's got the love, but they keep it inside..."

I can't sing a lick and I can barely hunt and peck out a tune on the piano, so I'm envious of those who can stand up on a stage and make beautiful music. I joked with Dan that I want to be a bass guitar player in a band. I think it's the perfect role for me - learn a few chords, stay in the background, and keep the beat. One of our friends heard us joking and tried to called my bluff - he's got a bass guitar and amp cluttering up his basement that he'd be glad to donate to my musical fantasy!

Speaking of friends, Dan and I were a little apprehensive about being out and socializing. It had been a rough week and we didn't want to be a black cloud when people were just hoping to go out and have a good time. But, as we've learned before, people are kind. I can't count the number of friends from different segments of our lives who genuinely wanted to hear how we were doing and gave us a chance to talk. Somehow, we were able to talk about Shannon just enough, and yet listening to the music provided an escape. Very nice.

Meanwhile, back at the ranch, Shannon has been feeling better and eating better, but she's frustrated by the things she's missing out on. While Erin has been off socializing, swimming, and sleeping over with friends, Shannon has been mostly confined to Willow Lane, following doctors orders to eat and rest. She really wants to be golfing and playing hockey with her peeps. Luckily her best buddies rescued her for a couple of low key outings to the movies and that lifted her spirits a bit. I can't blame her for being a little pissed off - what (almost) 13 year old wants to spend every minute of every day with their mom and dad?

Shannon has been a trooper about the meds being ramped up again - managing the nausea has required round the clock Zofran and twice daily doses of steroids and antacids. In addition, this weekend meant trying the antibiotic Bactrim again to protect her lungs from the immune system suppression that's coming with the next round of chemo. This time around, knock on wood, she's tolerating the Bactrim. It's a lot for a young lady to manage. I can't dwell on it or it makes me sad, but it's her reality now. I told her today that I'm proud of her. She gave me a half smile...

So the weekend is drawing to a close and tomorrow we will be back at Mayo to follow up with Dr. Rodriguez. A check of Shannon's weight will determine if she's strong enough to start a little more activity this week. But, if she's strong enough, then she will start the 5 day maintenance cycle of chemo as well. Take the bad with the good, I suppose.

This week will be a little different around here as it's just us girls. Dan is traveling this week. I won't go into details because it's his story to tell, but here's a little teaser: it involves one of his customers, a private plane, and several golf courses...

Friday July 8, 2011

The steroids are kicking in.  The appetite is back.  The food is staying down.  The sass is back.  And the Twins continue to own the White Sox.  All is right again on Willow Lane!

We're rebounding nicely but not completely out of the woods as Shannon still has vomit paranoia and is not moving around too much.  As usual, she's following Dr. orders to the letter; she was prescribed rest and calorie ingestion. 

Shannon had a good eating day Tuesday but threw it all up that night - her confidence was really jolted. Not to mention her abdominal muscles are really sore. Wednesday she ate small portions but kept it down.  And Thursday she started craving foods and eating with more and more confidence. Reese's puffs, ham and cheese omelet with an english muffin, carnation instant breakfast milk shake, mac n cheese, pizza rolls, banana, shredded pork and jo-jo's from John Hardy's, a snack size McFlurry...  do not try this at home.  The challenge for the rest of us in the house is watching and not participating. 

The forced rest forced us to open a Netflix account and now we are streaming movies in bulk.  Cousins Jack and Laurynn were in town and joined us for a movie Wednesday.  Thursday it was Devil Wears Prada with cousin Gracie and Aunt Megan. 

The brightest side is that Shannon is once again interested in socializing.  For several days there she did not have any interest in interacting with any of us.  But now she's got her text back on.  Friday she has a buddy coming over to hang out - maybe go to a movie if Shannon is up to it.

The only downside is that Erin is becoming increasingly annoyed at her big sister.  With Shannon sick, Erin was forced to tiptoe around like the rest of us.  But now that Shannon has carte blanche to order us around and sit on her butt Erin's eye rolls are increasing in frequency.  Hey that's just like the old normal!

A couple musical observations to share; the youthful English singer-songwriter Adele has it goin on.  Man, she sings some soulful tunes. Highly recommend.

Saturday, Jen and I are excited to see Eric Hutchinson at the St. John's Block Party - we are so proud that our home parish is producing such a cool summer music festival  and Saturday we will get away for a few hours to take in the music of this young American singer-songwriter. 

Deep breaths.

Tuesday July 5, 2011

My whiteboard calendar is mocking me. You know the color coded one that I keep on the kitchen wall to track the activities for the four of us? My family loves to tease me because I'm a little obsessive about it. But now, I think I need a one day calendar. I could wake up in the morning and say, “what are we going to try to do today?” I really shouldn’t plan any farther ahead than that. Because, I thought we were moving forward - there had been no vomiting for a day and a half - but then tonight, after having a relatively good day, Shannon vomited up her dinner and now she’s horizontal on the couch and so angry and frustrated. This is as down in the dumps as she’s ever been. Damn.

At our hematology appointment today, Dr. Rodriguez listened to all of Shannon’s symptoms and told us she feels this is most likely tumor and treatment related. The cells dying in the tumor are wreaking havoc in the adjoining healthy brain tissue. Shannon has lost 11 pounds. So, we will wait a week on starting the maintenance dose of chemo and try to give Shannon's body time to recover. A follow up appointment is scheduled for next Monday to check Shannon's weight and see if she's ready to start the Temodar again.

After hearing from Dr. Rodriguez, Dr. Laack called this afternoon and upped the steroid dose to try to curb the nausea and any brain swelling there may be, and to hopefully spark Shannon's appetite. Shannon is under doctors orders to stay home, stay out of the heat, rest, drink lots of fluid, and eat lots of calories.
So that stuff that I wrote on the color coded calendar for this week - hockey, golf, St. John's Block Party, shopping at IKEA... never mind. We'll get up tomorrow and see what we can do...

4th of July

If I messed with our karma by complaining about our "perpetual vacation" a while back, I sincerely apologize. This blog is much more fun to write when we're giving vacation updates instead of health updates!

Today is a better day than yesterday, and yesterday was better than the day before, but progress is slow. Shannon had her fourth liter of IV fluids this morning and that helps her to perk up. We’ll see how long it lasts today.

Thank goodness for the kindness and caring of the nurses we’ve come in contact with over these past five days in the PITC. Here it is, a beautiful sunny, holiday weekend and nurses Shelly and Tall Tammy and Short Tammy all acted like they didn’t want to be any place else. Just here to help us help our kid feel better.

Erin has been along for these infusions this week - at her request. She likes to be “in the know”. She gathered information from nurse Short Tammy during the first infusion about how the pump works and how fast they can infuse the fluids - 600ml per hour was the pace that worked best for Shannon. So, the next day, with nurse Tall Tammy in charge, the pump was set at a slower speed and Erin politely explained that Shannon could tolerate it at a faster pace so Erin suggested “let’s crank it up so we can get outta here sooner!” By the time we arrived today, Erin’s reputation preceded her. Nurse Shelly had a note left by Tall Tammy suggesting she check with Shannon’s little sister to make sure everything was going as it should!

So, we’re trying to laugh in between our tears. Tomorrow brings another step in the journey. Our four week “rest period” has ended and we head back to Mayo 16 for a blood draw and a hematology appointment to make plans for the maintenance dose of chemo that is scheduled to start this week. We’ll see if they delay it a few days as Shannon works to regain her strength.

Hopefully today is the day the vomiting will stop and the sparkle will return to Shannon's eyes. We miss our sassy Shan. She’s been a shell of herself, and that has been so hard for all of us to see. The crux of all our emotions this week is this: Shannon has looked like a cancer patient. Imagine that. How could it catch us by surprise? Time to step back and remind ourselves that each good day is a good day ...

Happy Independence Day, everyone.

Sunday July 3, 2011

We are back at St. Mary's this morning at PITC (Pediatric Infusion Therapy Center).  This is a good thing.  It means Shannon is getting more fluids and she's not having to do it in the ER.

We met Dr. Barney at Desk R for a quick exam.  Dr. Barney is the radiation/oncology on-call physician and he needed to see Shannon before he could order up the IV treatment.  And he pulled the strings to get us in here at PITC.  In fact, he ordered up one for Sunday and Monday and we just worked it out that we will be back 4th of July morning as well as we try to stay ahead and keep Shannon hydrated.

Dr Barney's exam found that her resting heart rate was fine but after forcing Shannon to take a short walk it spiked again indicating some dehydration.

The nausea has subsided slightly - but not completely.  In fact, Shannon threw up again when we got up here for the infusion.  But her eyes are brighter.  She is moving a little faster.  Still requesting a wheel chair to get around the hospital.

So we are watching Rafa vs. The Joker in the Wimbledon men's final, reading the Sunday paper and taking on same fluids that will hopefully lead to a better day.  Baby steps.

Saturday July 2, 2011

First of all, if Jen kicks the bucket we are so screwed. 

Managing the meds alone would push me to the edge - the new Zofran, the old Zofran, the Phenagren, the Decadron, the pill cutter...etc...etc...etc.  Then there is the managing the rest of us - the pills are kid stuff compared to managing the kid stuff.  And then there's me... let's just say it's a good thing I can cook.

Shannon continues to struggle finding any adrenal chemical to drive thirst or hunger or generate any energy to spark a rally.  Maybe we are making slow progress but it is really slow.  And it's really putting a strain on all of us because it is so frustrating to put a finger on the cause or find any relief.

Over the past four days, we have demanded much consultation with our Mayo radiation/oncology team and they are just as confounded.  We have added a 1mg dosage of the steroid Decadron to see if that will help tame any possible swelling or add some spunk.

This morning started with promise as Shannon asked for and ate half of a banana.  And later a small portion of bagel and a trip to the backyard to watch Erin and Jen tie-dye shirts.  But after settling back onto the sofa she threw up again.  Mainly what came up was liquid but certainly there was not enough nutritional substance processed to fuel a Shannon comeback.  Still, she found some joy in watching the USA Women's World Cup win over Columbia.  There was sparkle in her eyes.  Progress.

But then the sofa monster got her again and she never really rallied for the rest of the day.  Back to the sleepy eyes, lethargic, unresponsive Shannon struggling to find enough energy to even call for help.  Grandma came over for a few hours of relief work and got her to take in some chicken soup and more Gatorade.  (I'm not sure the poor kid will ever be able to drink Gatorade again after this week.)

Tonight we made another call to the on-call radiation/oncology resident and we will meet him at St. Mary's in the morning for another IV infusion to keep us current on fluids.

Maybe tomorrow will bring more promise and less frustration.  Maybe we will get more sparkle and fewer snarls.  Maybe tomorrow we will all stay happy and Shannon will get hungry.  And maybe Matt Capps will be able to close out a win for the Twins...

Friday July 1, 2011

Shannon had another infusion of fluids this morning.  That's two liters of the saline that has been pumped in to her body in the last 18 hours.  We are back home and Shannon is just wiped out and throwing up anything we try to get her to eat.  We've been on the phone with our team in radiation oncology and we're treating this like the flu since the vomit is now accompanied by diarrhea.  Lovely.  Diarrhea would not likely be a symptom consistent with tumor swelling around or near the nausea center in her brain.  Probably TMI.

We are desperate to get some nutrients in her.  But even four bites of a milk shake with instant breakfast mix in it came right back up. We are armed with a couple different anti-nausea drugs and just sitting and watching and hoping she can find some stability.

We had to bail on the Twins game tonight with cousins Joe and Leila and Pat and Mame.  Shannon wanted us to go without her.  That wasn't going to happen.  She has been such a warrior for us - so hard to see her so weak and feeble.