try not to be sick Saturday!

Hey! Mackenzie blogging today with the basic update... Emily got the chemo drugs in the hospital and held up just fine on the fluids. She was able to come home yesterday on the condition that fluids continue here. The nausea didn't kick in until yesterday, as she was making her way here back home. She felt awful all day and kept her head under her blankie and said probably 3 words and just slept. The home-health care nurse was here last night and the fluids pumped overnight made her feel a lot better and this will happen again tonight. The good news is that she is in not pain, just constantly feels miserable from the nausea. She woke up today feeling better and is force feeding some gatorade and cheerios and rice. She still can't hear us talk about food, watch food commercials, or even think about any kind of food that actually has flavor. As you know, this is so weird for my sister because normally she eats SO SO SO much of everything (this shows in the 20ish pounds she has lost since the start of all of this). Today has been girls day for us! My mom and sister and both of our golden retriever sisters are in bed watching movies and tv and relaxing. We call Lily and Daisy "Nurses" now because they sleep here with Emily and actually make her feel comforted when we can't be in the room. The reason Emily did not want to write this blog is because even thinking about the chemo and how she reacts makes her wanna get sick but these days, what doesn't make her want to get sick. If she hasn't responded to you when you ask how she is doing, its because talking about it makes her wanna be sick! She is recently comforted by the thought that nothing in her life will ever be harder than what she is going through now and a simple 24 hour flu will be a piece of cake for her. We all want to go on vacation more than anything, anything at all. UGH we will when this "nightmare" is over... Love from all of the Evans girls and Todd and Joe, too! ps dad look i finally blogged :)

Lemonade

So excited for today! Well...not really, but I'm feeling much better today! Checked back in up at M50 a few hours ago and now I am starting to wind down for the evening. I had only 2 hours of fluids before beginning the Doxorubicin (1st chemo drug). The Dox dripped for 15 minutes only, short and quick! Then came about 2 hours of fluids medicated with agents that help to pull the chemo out, prepping me for the Cisplatin. Just before 9, the two nurses came back in covered in their blue gear to hang up that big bag of chemicals. So, it's running, about 2 more hours (4 hours total) and then fluids all night. I'll be up every 2 hours to pee, so if anyone is bored contact me, I'll be up through the night. But, I plan to sleep all day tomorrow until the chemo starts again in the evening. So many nerves have been in my stomach today...these are the big dogs...the "rough" ones that start off cycle 2. 


I guess I do have something to celebrate...beginning this chemo treatment, although a week behind originally planned, marks the end of my first 5 week cycle! So crazy to think about how my life has changed in 5 weeks. The ups, the downs, the surprises, and the goodbyes of life that I have had the opportunity to experience really humble me and remind me of all the blessings me and my family share through this roller coaster. 5 is my lucky number for the time being. 5 weeks is one cycle and I have 6 (now 5!!!) more cycles to complete. 5 is the number of members of teamevans, my foundation where without each member, I would be lost. Todd and Jane, best parents I could ever ask for. Mackenzie and Joe, God blessed me with you to have some fun along the way. And then there's me. Emily. Haven't quite figured out my piece of the puzzle yet, my slice on what is planned for me in life. This curveball, this little c, all of it I know is for a reason. Someday, I pray I may be lucky enough to understand why. 


Life truly is a glass of lemonade because it's what we make of the lemons. The rough times, the down times, the sad times, the times when you don't even want time, it all makes some pretty sweet lemonade. Make some lemonade tonight and please just enjoy it. Think about your trials and your struggles as the lemons that make that sweet lemonade. That lemonade is victory, life is sweet. Life really is good. As my favorite artist of all time, John Mayer, says, "I know the Heart of Life is good."


We all have our struggles and our trials, things that put us through the ringer, but in the end, I will always believe there is a plan. Some guy upstairs is headed to bed right now with a lot on His plate too, might as well send your problems up His way, He will be up all night too. Much peace and love, yes my struggles will be hard with this chemo, but I am trying to take it one step of the time. My sister got me a book today, also the slogan on my phone cover, entitled "Keep Calm and Carry On" - Good advice for hard times. It's a book of quotes, something else I can share with you throughout my journey. 

(P.S. My shirt says "game on")

I am saying Goodnight to my beautiful mother, laying in the fold out chair bed right beside me, goodnight to my sister at her sleepover, goodnight to my brother and Dad at home. You all are the blessings in my life, the days I drink that sweet lemonade. Goodnight to my friends in St. Louis, you continue to be my motivation, goodnight to all my friends and family everywhere. Couldn't be more blessed. Please enjoy your lemonade, have a safe an wonderful evening. Much, much love and peace to all.

Wedge Salad

Hey everybody! It's your favorite sister Mackenzie here blogging with my wonderful boyfriend Mark on SPRING BREAK!!. We were put on the job of blogging tonight with (pretty much) only good news to report. 

The last time Emily blogged, we were outside in the sun. Just hours after her last post, a stomachache set in that still has yet to go away. She struggled with eating, drinking, and especially taking orders to do so from myself or my parents! She couldn't keep much down on Friday or Saturday but relaxation and force-feeding have seemed to do the trick as she ate an ENTIRE wedge salad tonight (this is a big deal.)

Now that I am home on spring break, I get to spend more time with Emily and I try my best to understand the kind of pain that the inflammation in her lungs causes her at all times. Its so hard to see her in so much pain all the time and there is nothing we can do about it except wait it out and take some Motrin.

The visitors keep coming and most of the time help her to relax and enjoy the company of people other than my family. Today during a visit from Mrs. Kurtz and Tori earlier today, Emily received a phone call from my dad saying that a short visit to S20 was necessary- the doctors needed to look at her. Because her reaction to the chemo is SO VERY rare, they don't have all of the answers. The good news is, her blood counts were very good thanks to all the spinach she has been eating (credit to my mom for this one!) You should see Emily light up when we find out the counts are good. While in the room, the doctors gave us a plan in a way that made me feel like we were in the locker room before a big game-- the big game being the two huge doses of cysplat and dox that she is on for getting on Wednesday (chemo drugs.) These are supposed to be the "hard" drugs, but relatively speaking, probably not so bad for emily because of her reaction to methatrexate that she constantly calls "garbage." 

Anyhow, after the visit, Emily and my dad got to visit with my Uncle Jack and Aunt Diane where she ate more than she has probably since chemo started. THIS IS GREAT NEWS and means a stress free household if only for a few hours!

Gotta love my family!

Much love to all and apologies for Emily's laziness with blogging. She has really, really been feeling crappy and I'm not one to sugar coat anything this really is not fun for any of us BUT she can laugh now which makes it a lot easier for Mark to be in the house :) We are home and relaxing no big worries until Wednesday! 

GAME ON

ps "I miss Greg" #emily

--Mackenzie and Mark

FUN in the SUN

HELLO! It's me again! By me, I mean Emily! I am back to (decent) health! Words cannot describe how much of a whirlwind this past week has been...

I am here to report a few things...1. I can breathe easier and it doesn't hurt as bad to laugh anymore! That was a killer for the last week. and 2. I AM HOME! Yesterday morning, I took a shower at the hospital and felt much better. My doctor came in to see me, and once again, delivered some great news, I could go home! Originally, today (Friday) was supposed to be discharge day from the hospital but because I "improved" so "quickly" I was able to leave around 2 yesterday afternoon! (I put improved and quickly in quotes because improved to me, still isn't great, and it definitely did not feel like a quick recovery haha). but LIFE IS GOOD. I got home to a wonderful sunny day and as I was  about to get out of the car, I realized we left my crutches at the hospital. I had no problem riding back with my dad in the jeep with the top down to pick them up, I was on complete cloud nine yesterday. I was literally in such a good mood, so thankful to be home and thankful for the sun, I literally was crying to myself about how great life is. Funny about that...life isn't that great but my Dad and I realized it sure makes us appreciate the little things. 

Last night, we had a mini cook out in the back yard and enjoyed all the time we could outside. We fired up the grill and got to be together as a family in the back yard. I am outside again this morning soaking up a few rays with Kenz who started spring break today. Of course she's in her swim suit and I am in a long sleeve tee, sunglasses, and a hat, but I don't mind. I just like being outside! I can't explain how much better I feel and how wonderful it is to "breathe easy" now. 

I know my parents have blogged about this already, but HUGE shout out goes to my SAINTSATIONS who drove up from the NCAA tournament in Columbus to surprise me in the hospital. I was in absolute shock and LOVED it. And of course, by wonderful friends that dropped in and out (Greg, Johnny, Jackie, Ali, the whole crew..) Thanks again to all of you. (PS sorry I was...out of it...this whole weekend haha). 

Well I hope everyone has a great Friday and a relaxing evening. I am back to the hospital again on Wednesday for another round of treatment. We have definitely learned there is no "easy" way out of anything and life never goes as planned.... (of course I am one of the few that has a reaction to the chemo that I need to cure my cancer) just my luck. But, all we can do now is move on and learn from it! The sun feels great, hope you can experience it too. Thank you as always for the prayers and love. Much peace and love headed your way from Teamevans. Happy Friday! (And happy hunger games ;)) 

A breath of fresh air

Unfortunately it is Daddy-O, which means Emily still isn’t quite up to par.  Emily was feeling a little better yesterday and had more energy for spurts throughout the day.  At other times she still experienced high levels of pain when coughing, burping or laughing.  Body movements were still slow and deliberate.  She was disconnected from the EKG and the oxygen because she is able to maintain a lower heart rate and good oxygen levels on her own.  And, a morning x-ray showed a slight improvement in the level of fluids around her lungs.

The general plan for this particular round of treatment was to load Emily up with Methotrexate for 24 hours and load her with fluids to flush it out over the next 24-48 hours.  Every 24 hours blood tests are run to measure the methotrexate level.  Last Thursday and Friday Emily did a good job of flushing.  However, Emily’s level had actually started going up yesterday.  The extra fluid around her lungs appears to be a collection area for the methotrexate.   The level in itself was not alarming, but we do need get it out of her system before she can be discharged.  This is especially important as it appears that Emily is one of the rare patients in whom the methotrexate causes the Pleuritis.    

With more information available each day, a plan for treatment is created.  With pain preventing deep breaths, parts of her lungs began to collapse. So treatment included more pain relief, a steroid, and respiratory therapy.  The respiratory therapy includes a couple of devises designed to have her take big breaths and long exhales to expand her lungs.  There was also some concern about her weight loss.  Over the last month she has lost more than the freshmen 15 she laughingly says she gained her first semester.  With the long road ahead and lots of reasons why she won’t feel like eating, including the mouth sores, last night a nutrient rich IV was added to her treatment.

The special upside to yesterday was that we were able to put her in her wheelchair and get her outside a couple of times.  We made our way up to the rooftop which was way cool.  It not only felt good for to be out in the sun, but there is an awesome view of the downtown Cleveland sky scrape. Later in the evening we picked up some Chinese food and the whole family had diner up there.  It was great to have the family together on a lovely spring evening. 

Emily’s sleep was cut short last night.  In the hospital, her vitals get checked and medication administered on a scheduled basis, even through the night.  At 4:00am a routine blood draw turned into a 3 hour task which included a replacement of her IV needle in her medi-port.  The line was blocked, making it impossible to draw the necessary blood samples.  After a few hours of sleep this morning, Emily continued to improve again today.  She is now very capable of crutching to the bathroom again.  Yeah!!! Because she ate dinner last night and breakfast this morning, they are taking her off the nutrition IV and migrating her to oral pain relief.  

Another x-ray will be taken Friday morning and we now have hopes of getting her home this week-end.  Her spirits continue to be good, especially when the pain diminishes.  She still has pain, but the most intense pain is somewhat self-induced.  She spent some time on social media today and many times laughed herself to tears of pain.

Emily misses everyone and wants to thank you all for being "so awesome." 

GAME ON!
Daddy-O

Laughter is NOT the best medicine today.

It is Daddy-O at the keyboard tonight. Instead of heading home on Saturday as expected, it turned out to be more rough days in the hospital for Emily.  As Jane explained in yesterday's post, since early Friday morning Emily was struggling to get deep breaths, had body aches and pains, and was flirting with a fever.  They ran tests and all of the big items and all of the major concerns were ruled out.  Her heart and lungs had looked good on Friday, but since then the body aches have turned into very strong pains in her torso.

Trips on crutches to the bathroom became agonizing slides out of bed to her bedside commode.  Quick movements made her torso feel like one huge pulled muscle.  The sharp pains made breathing very difficult and short breaths made her oxygen levels drop below satisfactory levels.  Once she slowly, and gingerly, settled back into bed, she could begin to catch her breath.  It was a very stressful cycle. Very early this morning, her fever reached 102.9 degrees.  Hiccups, burps, and even laughter caused excruciating pain. Frankly, the pain, stress, fatigue and discomfort made Emily look like a cancer patient. 

Another CT scan and an echocardiogram was taken today.  Her heart continued to look good, but the CT scan showed some fluids building up in her lungs.  We are still not exactly sure what is causing all of this discomfort.  Right now it appears to be Pleuritis, an inflammation of the lining of the lungs and chest (the pleura) that leads to the pain.

 

They continue working to determine the cause, but at least now Emily is receiving antibiotics and pain relief.  She is feeling much better.  The fever is gone and the pain is manageable.  She even ate subway (her first meal since last Wednesday) for dinner.  The GI track sores still exist, but they have not been an issue relative to the pain in her torso.

We knew Emily’s path and timeframe would be based on how her body reacted to all of this treatment.  Her initial map called for another treatment to begin on Wednesday. That treatment has been postponed until Emily recovers from her current issues.  She will likely be in the hospital for another couple of days and then a new map will be drawn.

It has been tremendously painful for Emily, but it has also been tough on all of us who care for her. We try to make her comfortable.  Sometimes all we can do is lighten things up with a stupid comment, joke or pun. But we are especially helpless when one of the few things we can do makes her hurt more. She may not be able to laugh without pain, but she sure can smile…and man do we love that smile. We look forward to Emily posting her own update the blog.  Nobody does it like her. Tomorrow is a new day. 

We hope that all her friends returning to school got off to a good start today.  Make sure you take advantage of the opportunities you are given.  Keep getting smarter.

Congrats to the Billikens and Saintsations for a fantastic season.  We sure enjoyed the way you competed and were cheering loudly from M50.  We think your fan base in Cleveland has grown exponentially…much like the love and support for Emily.

Peace and love to you all.

"Feel Better First"

..... That was the final set of directions that Emily received from her St. Louis University Saintsations Cheer Coach Lori P.  yesterday.


Lori and the NCAA travel squad of Saintsations visited her yesterday at the Cleveland Clinic.  After the Billikens posted their victory over Memphis on Friday night in Columbus, Ohio, the Athletic Administration granted the squad and Coach to travel on their charter bus from Columbus to Cleveland .... to see our sweet Emily.  It was a two hour and fifteen minute excursion and they arrived in sunny 75 degree Cleveland ON ST.PATRICK's Day.


Since Emily was still resting, MOMMA and DADDY-O bought them a round trip all day RTA pass to ride down to attempt to see the parade, via escort, sister Mackenzie.  It was a nice thought, but over 100,000 people were downtown riding the public transit... some challenges but it worked out.  Our friends and Emily's employer, PIZZAZZ, provided some pasta, salad and pizza for the girls in a conference room here at the Clinic.  Late after noon, they all tip toed into Emily's room and there was not a dry eye in Room 4.  The girls visited in shifts and had some time to catch up in their off day from the tournament.  Coach Lori had some quiet time with Emily too.


Since Friday, March 16 at 5:00 am, Emily has displayed some difficulties in taking deep breaths without pain.  As that day's blog said, ALL results from a battery of tests were good.  No alarming, or obvious, problems in the "major" category.  That is a blessing, but not totally comforting, when we have watched Emily live with body aches, pain on inhalation, racing heart beat and dipping oxygen levels when moving. She has had a low grade "fever" but not a clinical "fever".  We have learned that 100.4 is the magic number and she has not posted that at least 2 vital signs in a row.  Hovering there off and on since Friday.  Limiting tylenol due to therapy drugs and reaction.  Had a breathing nebulizer with some slight improvement, but no "aaaaahhhhh" moment.


Today is a rest day, still at the Clinic under wonderful care.  Em slept beautifully, with the help of one small boost of morphine.  She was up moments ago and practiced breathing in a little air device and made GREAT improvement over yesterday.  She is not in as much pain, and we find that relative to her breathing.  Our focus is to keep her pain low, muscles relaxed so they will take deep breaths.  When she is hurting, her body does not want to... then her heart races.... and on ... and on...


As you enter your day of rest, keep sending good thoughts, prayers and energy to Emily.  This is a time when it is most needed.  This is one of the windy curves in her road map to wellness.  We knew when we started, this would not be a straight line.


Thank you to everyone... cannot even begin to list names, but this weekend special shout out again to SLU the Saintsations, Men's Basketball and the Athletic Administration ... Go BILLIKENS... beat the SPARTANS (Sorry C.Cook)  ....   we had hopes to drive to Columbus today to watch the game.... but that is not on our agenda .... thanks to Mackenzie, Joe on his special feast day (today is St. Joseph's Day) ... friends Sherri and Jenn who did some extra running around for us .... and congrats to MOMMA's parents, John & El who celebrate 62 years of marriage this day.


Let's keep lifting each other up and as Lori said.... feel better first.


Go Emmy!

Headin' to the Dance!

Hey Everyone! Greg and Johnny here. Em's taking a quick snooze after a very long day and exciting SLU basketball game so were just gonna give a quick update on her day. 


Em's day started when she woke up at 5 a.m. with tightness in her chest and difficulty breathing. The doctors took every precaution and gave Em an X-ray, a standing X-ray,  a CT scan of lungs, and an EKG done throughout the day to make sure everything is alright. Even though Em was feeling pretty crappy, the results came back positive. All the testing aside, Emily was still having a pretty rough day and hasn't gotten good sleep since she first woke up at 5 a.m.


Despite all of this, our girl battled through the day. As the evening rolled around,  some visitors came over to cheer for the Bills alongside Emily. M50 room 4 was packed for the SLU game...Those in company were Mr. Evans, Mackenzie, Joe, Mark, Jackie, Johnny, Greg and Emily. SLU played a great game and fought hard, dedicating the game to Em. It was tied at 23 at halftime, with both teams competing hard for the W. In the end the Billikens came together and got the big W to advance to the round of 32 facing the winner of the Michigan St./ LIU Bklynn game. Shout out to the whole Billikens team on the huge win! Emily was so happy for her Bills that it brought tears to her eyes. She missed being out there with the cheerleading squad but is so happy for her girls out there. Every time the camera showed the SLU cheerleaders Em would shout out "Those are my girls!" and proceed by naming them all off. She's so proud to be a Billiken and was ecstatic to see SLU win. Her goal is to meet her teammates on Sunday in Columbus! After the game Emily looked at us and said "The Bills did their part now I have to do mine." Em's positive attitude never ceases to amaze and motivate me and everyone else who knows her. As the night wraps up, Emily is feeling better and about to go to sleep pretty soon. The day started out rough, but has turned for the better. Tomorrow is a new day, which will present new opportunities for all of us. Let's all go to bed with a smile on our faces, appreciating all the blessings in our lives, waking up tomorrow remembering you gotta keep your head up.


Much Love,


Greg and Johnny

5-week mile marker

Hello it is teamevans on behalf of Emily tonight.  Our thoughts tonight tie to the very fact, this is a marathon, not a sprint.

We feel some awkward sense of achievement that Em has crossed the five week mark with her therapy last night.  This signifies that she has successfully completed the first segment of her "map" to full recovery.  If you have been reading along, this has not been a slam-dunk process.  She has earned the cheers from the fans along her roadside.

As we hoped and predicted, she slept the THURSDAY away.  If we can keep on this path, we are finding that her team here at the Cleveland Clinic understands how she works and what her training regime should be.  For now, we don't worry and when Emily was little she would have "rest time" (not ever, "you need to take your nap").  She has full appreciation for this, and doing great.

We thank all of her fans, supporters that have extended good wishes, energy and prayers her way.  They are the difference maker for her, and all of us.  We also have full, grateful hearts to her team at the Cleveland Clinic.  It is nice to imagine a world that this level of care, technology and medicine could be available to all those in need.  Can't imagine being in a place or time with Emily's affliction and not having it.

Tomorrow is a new day.  We hope it is one in which Emily will be a bit more "perky".  As she just said to DADDY-O and MOMMA!  .. "I can't wait till I feel great again.... without throat and stomach pain ... when I can take full deep breaths again...  when I can walk again... "  We chimed in... we can't wait either.  When that day comes, Emily will be the beneficiary of a full, remarkable life.  The world is the trophy that awaits her at the end of this marathon.

Keep cheering... we love all of you who stand along her road side.

MOMMA! on behalf of teamevans

"Hey Dad, are you still home?"

Hello it is DADDY-O.

Yesterday, as Jane and I were walking out the door to head to work, my cell phone rang. It was Emily calling from upstairs softly saying, "Dad, are you still here?" She said "my throat is on fire." One of the side effects of the Methotrexate is mouth sores. Up to this point, it hadn't been much of a problem. We gave her some pain medicine and called the Clinic to report the issue. We were given a new prescription to pick up and were asked to call the nurse back at noon. By the time I got back from the pharmacy, Emily had gotten sick. We think the pain meds triggered some nausea. Unfortunately, Emily was unable to keep anything down throughout the day...not breakfast, not water, not gatorade, not pedialite pops, not broth. Throat sores and a bucket!  What a combination on a beautiful, sunny spring day. When she is unable to keep anything down, dehydration becomes a concern.

We are trying very hard to keep Emily on her treatment schedule.  We are also trying hard to allow her to enjoy her days out of the hospital.  Nobody wants her to be in the hospital any longer than she needs.  To me, this is one huge balancing act.  She gets hit hard with the chemotherapy drugs, then we use an arsenal of other the drugs to manage the side effects.  We are still developing the recipe specific to Emily.  But we also know it will be a lot of trial and error.  Rest is important and it doesn’t take much to tire her out.

At 2:00pm, much to Emily's dismay, it was off to the S20 at the Clinic. They suggested we pack a bag (a soft way of saying that she would be spending the night) which was the last thing Emily wanted to hear. The thought of an early entry to the hospital was especially disappointing because there are so many of Emily's great friends visiting on their spring break. We also had plans to attend a special healing prayer service later in the evening.  We were hoping to just get some IV fluids in her and then carry on with her day.  As Emily has so often done, she bounced back and was feeling better.  Using her strongest powers of persuasion, she convinced the wonderful caregivers at S20 that she did not need to spend the night.  YEAH!!!  Take it from me, the women of teamevans have serious persuasion game.

We were so fortunate to have been able to accept the invitation from the Cianciabello family (John JCU Grad ’84 and Anna) to a prayer service for healing at St. Stanislaus Church.  Emily was one of five people to receive special anointing after we prayed the Joyful Mysteries.  Part of the special grace she received included laying on of hands and the MITRE of Pope John Paul II.  When he was a Bishop in Poland, before becoming Pope, he visited St. Stanislaus and appreciated the connection of this ethnic church to his homeland.  Emily was able to have his MITRE (fancy Bishop’s hat ) to be placed upon her with the Prayer for the Intercession of JP II.  This was really something special and another weave to our faith, our most favored Pope and story.  Clearly, another example of “world class” care for our sweet Em.  Thanks to John and Ana to include Emily in this special attention and care.  This was well timed, as it could include the group of Emily’s friends from SLU who are here on Spring Break and a handful of friends who could join us on short notice.  It was a moving night of healing ….

It is now early Wednesday morning, and we are preparing for her day of treatment.  I am confident that she will be energized by the beautiful weather and support of her amazing friends.  This will be her second dose of the Methotrexate.  We know a little bit more of what to expect.  She will get 6 hours of fluids before the 4 hour drip of the Methotrexate begins.  The drip always brings a dose of intensity and reality to this treatment.  Emily takes this on with such courage and grace as she fondles the IV line and watches the fluorescent fluid enter her body.  We expect today to be a day of good energy.  It should be easier to “keep her head up.”  Tomorrow we will be focused on “keeping her head down” and letting her sleep through as much of this visit as possible.  Thanks again to everyone for your continued support and love.  Please look out for each other.  As we saw in the service last night, there are still many people battling similar (or worse) circumstances all alone.  We are so blessed to have the entire Teamevans nation pulling for Emily.  

Just a Monday Night

Good evening...

It is Momma! Daddy-O and bro Joe. Kenzie is upstairs fine tuning her iPhone skills. We will spare all the details of cell phone drama over the weekend...

We have no exciting news to report for Emily.. Which is good. She has the usual related mouth soreness to the therapy drugs, not a whole lot of appetite but enjoys being home. Joe said that she is happy to be with all of her friends from SLU but it certainly wears her out. We are thrilled that friends from Dayton, Michigan State, St. Bonaventure, Ohio State, Miami of Ohio, John Carroll, Columbia and Harvard have made time to see her.... It has filled the "good" days with more good. We do not overlook her limitations though and she has been great about managing her time.

We hope that we have a super Tuesday and she will be ready for another visit for therapy on Wednesday. We have come to appreciate the opportunity for CHEMO therapy... The more we keep Emily on schedule, the better...the sooner this nightmare is over.

It is certainly worthwhile to mention our good thoughts are with the St. Louis University Billikens in the NCAA dance. The administration, friends and athletic department there have been so wonderfully kind to Emily and all of us. The Saintsations have been mentioned in previous blogs, but special shout out to them..... Oh how we all wish Emily could cheer on the baseline this weekend on Columbus, Ohio.

Emmy is beautiful bald and her smile continues for these days.... Stay with us in spirit on this journey. You are all lifting us up and we thank you.

Momma!

Home is where the heart is

Today was a great day! I slept in a little bit at the hospital and spent some quality time with Momma while we waited for me to get discharged. In order to be sent home, I had to clear enough of the Methotrexate out of my body. The nurses took blood every 24 hours or so to measure these levels, and my 2 pm, I was good to go!


I came home just in time to take a quick shower and watch the Billikens take on Xavier in the A10 semifinals. Unfortunately, we lost, but played hard! I am disappointed I couldn't be there, but my team looked great on tv! Way to go Bills and Saintsations! Towards the end of the game, I thought I was dreaming when 5 of my best friends at SLU walked in the door. Greg, Johnny, and Ali (Clevelanders) and Wolf and Andrew all came over! Wolf and Andrew drove all the way from St. Louis and I could not believe we were all sitting in my living room. Truly a dream come true to be reunited with my best friends. I can't wait to spend more time with them this week while they are on spring break. So blessed to have them in my life.


We had a relaxing night and watched Hugo (fantastic by the way!) and now I am headed to bed. Wiped out from just one day out of the hospital. Counting all my blessings as I am falling asleep. God sends us little blessings everyday despite hard times, mine are always disguised as friends. Much love and peace to all...have a wonderful night.

Got the Billikens on my mind

This morning was a complete 360 from yesterday. I woke up at 7 pm, yesterday evening, I officially slept the entire day. I woke up yesterday in the morning at about 3 am and 7 am, to empty my stomach into a bucket. That wasn't so fun, but I immediately felt better and the nurses were ready and prepared for more anti-nausea meds. I would like to give a special shout out to a wonderful drug called Benadryl -- I attribute my day of sleep and relaxation to it, for it definitely helped me.


Today the doctors are extremely pleased with how well I am handling the chemo. I look better, feel better, and am in a better mood! They will be drawing blood later tonight to monitor the levels of Methotrexate in my system. They were also shocked and pleased to see how much I've been getting it out of my system. Actually...the going out is more than what going in...weird. My methotrexate levels have dropped from 10 to 3 already which is great! They are thinking I can get out of here tomorrow if my body keeps handling this all so well! 


I crutched around with some physical therapy today and learned some basic moves for strengthening my leg, within moderation. SO looking forward to the days where I take my first steps...new leg, potentially new knee, on the path to recovery.


The Saint Louis Billikens have landed in Atlantic City, NJ, for the Atlantic 10 tournament! The #2 seeded Bills take on #7 LaSalle Explorers. My teammates, the Saintsations, are all there supporting the team. Wish I could be with all of you...now go get that WIN! Live game stats are about as good as I can get to keep up with the scores. LET'S GO BILLS!


Hope your days are great as well. Much love to all, hopefully I'll be writing from home tomorrow! Can't wait to see all my friends from school: Ali, Greg, Johnny, Kaitlin, and Jackie potentially later tonight? SO excited everyone is home on spring break! 


Keep your heads up, much peace, hope, and love...they sure do make the world go round. I've been crafty with painting today...

"Nobody said it would be easy" - Coldplay

It is nurse DADDY-O!

After such a wonderful day yesterday, we were brought back to reality when then nurses hooked up the IV of Methotrexate.  Just the sight of the fluorescent yellow fluids dripping through the IV reminded us of the intensity of the drugs needed to wipe out the little c.

Emily has had better nights.  Once the infusion was complete, the nausea came on strong and it turned out to be a restless night for Emily and Jane, who stayed the night. When I made it down to the Clinic in the morning, I was happy to find Emily sleeping. It didn't take long however, for me to be reminded of the battle her body is in.  She awoke for another trip to the bathroom and a quick grab of the bedside bucket.  After some more nausea meds, the lights have been turned down and a sign was posted on her door, "please let Emily rest". She has been sleeping all day with many of her favorites songs being played on her "chill" playlist.

I was struck by the Coldplay tune being played while I was rubbing her back as she clenched the bedside bucket. The chorus of the song kept repeating: "nobody said it would be easy."  Ain't that the truth.  I read her blogs everyday.  In many of them she makes it seem so easy, but I am hear to tell you that it is not.  My eyes continue to puddle watching our little Emily, with her head shaved and "blankie" in hand, look so beautiful while these incredibly strong drugs flow through her body.  Rest is is what she needs today.  We need to keep the healthy cells healthy, while the little c gets destroyed. GAME ON!!!

Emily always concludes with "keep your heads up and please keep smiling."  Before I conclude, I just want to thank you all for helping us do the same. Thanks to everyone for the love and support. Your outpouring of encouragement about the picture she posted yesterday was very well received. It really helped her remain fearless heading into treatment last night. She and Mackenzie are very fortunate to look so much like MOMMA.  To Emily's so very special friends at SLU...the t-shirts look fantastic. I definitely want the shirt with the message that starts with the letter "F".  Thanks to all of our families including: our GESU family, our Walsh family, our SLU family, our JCU family, our ABAIS family, our St  Ignatius family, our Kansas family (that is you Jenn), our families in Washington, Texas, Vegas, Florida, Arizona, New Jersey, New Jersey, Massachussets, Italy, Spain (Judit), and all our other families worldwide sending prayers and good energy Emily's way.  Teamevans has never been stronger...or had so many members. We love you all.

Tomorrow will be new day.  All things considered, we really have no reason not to "keep our heads up and keep smiling".  Much peace and love to you all.

GAME ON!!!

Nurse DADDY-O

Life is GOOD

HELLO EVERYONE! I am practically jumping out of my hospital bed right now...so much good news today. I woke up this morning with a smile on my face trying to "get pumped" for chemo...or as best as I could. Mom and Dad came home and I got dressed and we packed up to spend the next few days in the hospital for chemo treatment number 2! This drug I am getting is a high dose Methotrexate which drips for 4 hours, just for one day! We can expect to be here in the M-50 unit probably until Saturday so were all set to go with all the essentials for a few days in our suite (feels like it because it everyone here is amazing!). 


Like I said, this morning just continued to get better as we headed to the clinic around 11. It is a beautiful day and I'm wearing some of my favorite clothes...my Saint Louis Cheerleading shirt which we wear every pre-game when my team and I are warming up. I figured its appropriate getting pumped up for chemo haha. I am also wearing my KD green windbreaker because my sisters are with me always and a blue Saint Louis Billikens hat! Look good, feel good play good I guess...haha. We parked up on the top row of the garage because I wanted to see the sun for a few minutes before we went in. I decided because I was feeling so great to bail on sitting in the wheelchair to go up to the doc. So, I crutched the whole way through the tunnels and through the building up to my doctors office! I haven't done that much crutching since before the biopsy in St. Louis! 


More and more good news came to follow. They accessed my port and drew blood to see if my counts were okay to go in for more chemo today. After sneaking down to go get a burrito and chips and salsa from the cafeteria downstairs, we came back to incredible news. My blood counts have shot right back up to normal, super high numbers! I went from 0.00 neutrophils to 7.05! My white blood cell count went from 1.49 to 11.38! Platelets from 193 to 404! ALL GOOD NEWS! We were absolutely shocked to see how quickly I rebounded from being at the absolute lowest point I could be. Completely stunned. I am all back to normal numbers...or at least for a few hours before the chemo starts.


Were all checked in up at M-50, waiting on the pre-treatment fluids to begin which run for 6 hours. After the 6 hours, in comes the Methotrexate. That will drip for 4 hours and once it's out...in comes about 48-72 hours of fluids to flush it out of my system. It is extremely important to clear it out, fast. Another medicine called Lucovoren will be in the post-treatment fluids because it helps to make sure the Methotrexate doesn't stay anywhere.


We can plan on the chemo starting around 10 or 11 tonight. I guess I'm signing off until tomorrow. Through this experience, I've learned there are going to be good days, and bad days. But...the good days sure are sweet. Always remember to cherish them. Watching Ellen now...life is good. Hang in there everyone the sun will always come out again, keep your heads up and keep smiling. Much peace and love to all.


P.S. Here is a picture of me and my wonderful parents in our M-50 unit. Hairless and fearless. Game on.

Quick Update!

All is well at the Evans house! Yesterday was a great day, I felt great and got to do some things that are out of my daily routine of just hanging out. Dad, Kenz, and I drove Bianca to the airport to head back home. Afterwards, we drove around downtown looking for a Vietnamese restaurant that serves pho. We found one and stopped in for lunch! Those of you not familiar with pho...I HIGHLY recommend checking it out, yum! Afterwards, we headed home and watched some movies. 


I am feeling great, I am not having weird cravings for food and feel a bit more renewed energy! I am about to hope in the shower and get some things organized for tomorrow, as I head back to the cline for my second chemo treatment. This one is supposed to be a little easier to handle but no chemo is fun. I will be in the hospital from Wednesday through probably Saturday if all goes well. This will be my routine for the next three weeks in a row. A few days in the hospital for treatment, and a few days at home. I am scheduled to receive the chemo the next three Wednesdays. The routine is probably a good thing, but I'm not looking forward to it. I just have to put my head down and push through...only 25 or so more weeks! Ha! 


Hope all is well with all of you. Thank you all for the kind support and care, even just reading this blog. Have a wonderful day and keep your heads up! Tomorrow is always a new day, just keep pushing through! 

3.4.56

It is MOMMA!

It is absolutely impossible to express "updates" to Emily's day in mere words.  Today started off with celebrating Mass dedicated to my sweet sister, Gayl A. Bertagni, born on 3.4.56 who would have been 56 this day.  Bianca has been with all of us this week, and it was so great to share this day with her.

We always thought that Sunday, March 4th would hold special meaning for us, for this reason alone, but there has been so much more to add.  Emily's new found experience with the little c has added a new dimension to life that was not on our calendar pages for 2012, until her diagnosis last month.  Unreal how much all our lives have changed.

We did have on our radar that this day could hold significance for Mackenzie, who qualified for the OSHAA Cheerleading competition at St. John's Arena at The Ohio State University.  We also knew that it could be a special day for Joe, provided their 8th grade boys basketball team continued to "survive and advance" in the CYO City Tournament.  For months, we hoped and dreaded the potential conflict of wondering, how can Daddy-O and MOMMA! be in the same places at the same time?  True to form, TEAMEVANS lives minute to minute and we made it work in modified fashion....unreal, unreal and truly "minute to minute".    The Gesu Bulldogs, alma mater for Emily, Mackenzie and Joe, won the 8th grade CYO City Championship Division 1 - team title at 40-24 over St. Raphael's and Mackenzie and her Walsh Jesuit Warriors placed 4th in Division I Mount Cheer.  Also true to form, Bianca, Kenz, Mark M. and I white knuckled our way home from Columbus, Ohio through Summit County in one lane white out snow conditions.  Just pulled in to Conover, but only after we ran out of gas on Richmond Road.  Unreal. Unreal.  I simply prayed the whole day for everyone's safety - both Gesu and WJ teams and their opponents - as well as for all of us as we navigated this day.

So this "blog" is supposed to be about an update for Emily, and this story reflects the fact that our life goes on.  Our crazy existence has not changed much in some ways, but has been completely overturned in others.  To see Emily, the amazing way she glows without the natural, beautiful head of hair, is inspiring.  She had so many other plans for this day - to be at SLU, be with friends cramming for mid-terms, planning a spring break, going to 9 pm Mass at College Church - but no, she graced her wheelchair with a smile and brought her good energy to everyone she saw.

It has been a real roller coaster.  I can only imagine what the next 7-10 months will be.  Somethings will occur in order like "3.4.56" and some things won't.  Thanks for caring to read on....because, it is still GAME ON for us.

Hairless and Fearless

The good news keeps on coming today. First, I just have to say thank you gain for all the love and support that you all have shown my family. We are continuing to be humbled by this whole experience and truly appreciate all the prayers and love. Thank you so much. 


Today started off good, just relaxed in the morning and the whole family came and visited. Around 12:15, it was time to say goodbye to my head of hair...or what was left of it. I was so sick of my hair falling out all over the place and it was time to just shave it off. So, the wonderful Marcy Cona, owner of MC Hair Consultants, came all the way up to the clinic to kindly get rid of my hair. She did an amazing job and worked in stages, cutting my hair to various short lengths and then shaving it all off. I am a little insecure still, just because I am not used to it, but no tears were shed (which is rare for me)! It is going to be so nice not to have to worry about my hair. I am so thankful for the amazing hair cut and the awesome ways Mrs. Cona helped me. 


In the middle of the hair removal process, My doctors came in and informed me that my counts have all increased! My neutrophil count, which on friday had officially dropped to zero, rose to 0.32, meaning 320! that was really great (although I'm still considered neutropenic because its less than 500) because the doctors said I could go home! We were told I would be in the hospital at least through sunday afternoon, so we were more than thrilled to get out a day early! Fever free and hairless, I finally got to leave the hospital room for the first time since I checked in on Thursday. Greg, who is home this weekend from SLU, wheeled me out to the cars and Bianca, Kenz, my mom, Greg, and I raced off to Holy Name to catch Joe's semi final game in the city tournament! Gesu won handily with a score of 46-24 over St. Peter. It was so great to see Joe play and we made it just in time for tip-off! 


Now the night is winding down, we are all at home about to enjoy some Pizzazz and relax this evening. It feels good to be out of the hospital, but i'll be right back there on Wednesday for a new chemo treatment. They expect I will be in there for 3-4 days, so right now, I'm going to enjoy the time home. Peace and love to all, and always remember to keep smiling!

Hair today..Gone tomorrow

Hello! Emily's cousin Bianca here. I would first just like to say thank you to everyone out there for all of your love, your support, your prayers, your gifts, your parking passes, your warm loving wishes..all of it. This family, my family, has appreciated every last drop of it. Emily is doing so great today. Her fever is gone, temp coming back down to normal and she will hopefully be back home tomorrow? Probably Sunday though. She is all smiles as usual, and the solid gold lining on it all is that she can bend her knee (a little bit) and feels very little pain. Her body and tumor are responding to the therapy!! On the other hand, just as promised, hair is going fast. So..Emily is taking control and shaving it all off tomorrow morning. Cancer is not going to tell her when she gets to lose her hair and I absolutely love and admire that. I could go on for days about my love and admiration for Em but I'll save that for my own blog. I'll just leave you with this...if you thought this gal was amazing pre cancer, get over it because she is 1000 times more incredible than any of us could have ever imagined.      


Peace, love, health, and happiness to all..

Back to the Clinic

Hello Everyone,


Your guest blogger tonight is Dad, or "Daddy-o" as Emily often refers to me.  Before I share the details of the day I need to wish Amanda happy birthday.  Amanda is one of the aptly named SLU Saintsations.  This group of beautiful young women have been truly sensational in their support of Emily.  Teamevans is incredibly grateful for their love and friendship.  Emily lights up with every skype session, phone call, card, or text.  There were plenty of tears and watery eyes on Tuesday night as we watch you represents so well for the Billikens.  Thanks for being so kind and thoughtful.


The day started off fairly normal, at least for our "new normal".  Kenz and Joe got off to school on time and Jane and I both made it into work.  We are so very thankful to have Bianca currently visiting with us.  Emily woke up just not feeling too well this morning.  She was generally "achy" with a mild sore throat and swollen glands.  As Emily mentioned in her last blog, she is currently nuetropenic and her immune system is very vulnerable.  These kind of symptoms are of some concern, but the symptom of greatest concern is fever.  Jane and I are both very fortunate to work for such supportive organizations.  Both JCU and ABA Insurance Services have been have been incredibly supportive as organizations, but the outpouring of support of our co-workers and friends has truly been overwhelming.  Hearing the news of Emily's discomfort this morning and living relatively close to my office, I was able set my laptop up in the bedroom and be with Emily for the afternoon.   


As the day went on, Emily felt more and more "cruddy".  Her temperature began to rise over the course of the day topping the 100 degree mark around 5:00pm.  Considering her nuetropenic condition, all of the other symptoms and fever, a call to doctor resulted in a trip to the Clinic.  Living so close to this world class facility, makes it a "no brainer" to make the quick trip M50.  The fever was up to 101.8 when we arrived, so we were all thankful we reacted quickly to her symptoms.  The nurses were very quick to get fluids and antibiotics in her mediport.  Within a half hour the fever was reduced and Emily was feeling relief.  So for now it looks like at least another night in the hospital and possibly a couple more.  


This is all still relatively new to us.  We understand that the next several months will have many ups and downs.  Right now though, the ups and downs are almost hourly.   We are strapping our seats belts for what looks to be a real roller coaster ride.  But for Teamevans this what life is.  We all continue to live each day with enthusiasm.  We laugh, we spend time in thought, and especially though this experience our emotions are moved every day...many times to tears.  Most of the tears are for the unbelievable support, love and prayers Emily and the rest of Teamevans have received.  We wish everyone could experience the so many acts of kindness we have witnessed.  You all inspire us.  Yes, for us, this is living.


Even with all of todays events, Emily was able to experience another Sacrament.  Father Snow was so very kind to join Teamevans at the Clinic and celebrate the Sacrament of Annointing of the Sick. The was another emotionally uplifting time for our family to share as we all laid hands and prayed over Emily for healing.  


Joe and Mackenzie continue to do great things on a daily basis.  We are all looking forward to the major event this week-end for them.  Kenz and the Walsh cheerleaders head to St. John arena for the State cheer competition on Sunday.  Good luck Warriors.  Joe, and the mighty Gesu Bulldogs, compete in the final four of the Cleveland CYO basketball championships.  Go Bulldogs!


We are thrilled to hear the encouraging news on Will Dittrich.  We are heartbroken that Mary and John have to watch their young son endure the treatment he has, but we are not surprised by the fight in the boy they so correctly named Will.  Many prayers and good energy go out their family and the caregivers at Rainbow.


So it is time to sign-off as Jane and I settle into these  comfortable pull out hospital room chairs.  Emily, still has a slight fever but is much more comfortable and is resting well.  We are anxious to see what great things will happen tomorrow.  


GAME ON!
Daddy-o