A Blessing

Hey everyone! Quick update! It's been so long since I've posted...crazy.

I am doing great! Thank you to everyone who has been thinking of me these past 2 weeks. I am bending my knee and doing exercises, I have my knee bending to 90 degrees now. We went for a check up today and we only heard great news. I am weening off of the pain meds because I'm doing so well! My incision looks fantastic and is doing so well. My surgeon's associate came and checked out my incision and took out a few stitches. Thank goodness because they are so itchy! I go for an appoint with my surgeon on the 5th. I have an hearing test and an xray and then an meeting with him! All fingers crossed, were hopefully going to get approval to start chemo again soon, and that is decided by the looks of my incision wether it is healed enough. If he says we're in the clear, then I have plans to start the very next day, Wednesday, June 6th. The sooner we start, the better so...GAME ON.

The very very very exciting news I have to report, we got the pathology results back from my tumor that was successfully removed!

We found out that greater than 95% of the tumor has responded to the tumor! they hope for at least a 90% response and I am at greater than 95%! This means my treatment will be just like the last 10 weeks, we will not introduce new chemo drugs, and my chance of relapse is significantly less!

Today has been a blessing and this news has brightened our day. The future is slowly starting to piece together and we are moving on one step at a time. 20 more weeks of chemo and then this little c will be gonezo! GOODBYE CANCER!

Much love and peace to you all!
Em

God Bless America

Hi Everyone..  just a quick shout out from Kenz and Momma this morning.

It is Memorial Day weekend and that brings many of the same experiences in our life each year - baseball, boating and celebration of Gayl's life, remembering how we mourned and how much she was loved, how much we are loved.

Em is doing well.  Specifically, she is managing her pain and it appears that the meds are less frequent and bouts of discomfort less traumatic.  She has a lot of work ahead with regard to increasing her ROM... range of motion.  She has muscle atrophy and weakness, along with the body's natural reaction to "guard" the left side, so her left hip is up.  She needs to remind herself to lower it, stay level and start to trust her new joint.  So much...

Emily is currently enjoying time with Greg and family and friends at Lake Chautauqua, NY... which is wonderful for her, and hopefully all of them.  We miss our lake house, especially at this time of year when all boats hit the water, but are reminded of how full our life is regardless.  Joe's team is on the field again at 3 pm and tomorrow and if they fair well, again Monday.... and this year has brought so much "extra" to our plate.

Best wishes to everyone for a wonderful start to summer.  May God bless all of the men and women in uniform, their families as they serve us and protect our way of life in the United States of America.  Please extend a quiet moment of praise and prayer to them at some point this weekend.  We hope the weekend brings a cookout or a parade or a nice concert or program on t.v. that celebrates how blessed we are to live in our democracy and be Americans.

Smile in the age of worry

Good Morning, this is Emily's sister Mackenzie. I was put on the job of blogging today with many updates for everyone. First and foremost is the reason you are looking at this page: Emily. She came home  last night and is thankful to be able to rest in her own bed. The pain management is a constant struggle... You know I am not one to sugarcoat anything. Emily is in a lot of pain, indescribable pain that many of us hopefully will never come to know. Her body is adjusting to a foreign metal contraption that has to conform and function as a knee. She is currently on a number of narcotics that have slightly affected her brain's functioning abilities although she would never admit it. She is put together and is her old self but sometimes we know the drugs take over when she becomes ornery or extremely emotional and has an episode. This is not easy for any of us to watch or know how to deal with, but we do our best. Despite the pain and the drugs, Emily is thankful for every second that she is still breathing. Trips to the bathroom have become more difficult than ever... the simple act of Daisy (one of the golden retriever pups) jumping up to say good morning, something she used to love, causes Emily excruciating pain. And we thought she needed assistance before. We were wrong. In fact I am home from school today for the sole reason of being with her and helping her in any way that she needs. She is resting and looks beautiful as always even though some peach fuzz has started to grow on her head. Go Emily. She is the reason I wake up in the morning when I think everything becomes too much for me to handle. She is my best friend and is here for me in ways that only a sister can. It wouldn't be sufficient to just report about her as there is so, so so much else going on for my family right now.


Just this morning, my mom and I trekked up to Gesu and attended my little brother Joe's Thanksgiving Mass (aka Pass it On Mass) in which the graduating eighth graders are honored as they pass on the leadership role to the seventh graders. Joe is the last of us to finish through Gesu, our school and parish for more than 15 years. Congratulations to our sweet Joe. He too inspires me every day with his never ending determination to excel and help out in any way that he can. He has maturity well beyond his years and will make us so proud at St. Ignatius. He is taking his math final right now, GO BRO! (as if he ever reads this) hahah


Today also marks the 3 year anniversary of the passing of my mom's only sister, Gayl, at the age of 53. Aunt Gayl was an extraordinary woman and a mother to all. Words simply do not do her justice... She means the world to my entire family. We miss her every single day and know that she is with us in all that we do.  I remember 3 years ago today was my Pass it On Mass, which happened to be the day before Gayl was going to fly in from Tacoma to visit and celebrate my graduation from Gesu. I had never been so excited to see anyone my whole life. The freak car accident that took her life that night turned my world upside down. I miss her everyday and think about Gayl's amazing daughter Bianca in Seattle, our family's rock. B we love you to infinity and back... missing Gayl today and everyday. She lives with us here, Emily likes to say that Aunt Gayl is the reason that she is recovering so quickly.


Aunt Gayl is surprisingly the reason that my Nonie, my mom's mother, is having gallbladder surgery today. She had been having stomach pains for quite some time and was admitted to the hospital yesterday.. turns out that she has gall stones. The reason that I think Aunt Gayl is the reason that she is having surgery today is because today was the all-day travel day for my Nonie and Papa to travel here from Seattle. If her stomach was going to flare up, we are so so so incredibly thankful that Nonie and Papa were not travelling. Pray for Eleanor today in surgery, and my incredible papa John in the waiting room. Their visit to celebrate Joe's graduation has been postponed... We can't wait.


As if all of this massive change and confusion is not enough, today I have my first meeting with the College Guidance Counselor. COLLEGE guidance. As if I have been thinking about college... honestly it stresses me out so much. Something like 9 days until summer vacation... thats all that I think about.


To finish on a solid note, John Mayer has been the obsession of me and my sister since we were 7. Everyday that he has dropped an album since then, Emily and I have made our favorite run to Target of all time running and screaming and grabbing the album and creating a scene. How I wish we could do that together today; his newest album titled "Born and Raised" dropped at midnight... another coincidence? Its just what we need right now. So thankful. Happy birthday to our dear, dear friend Sherri and a great day to all of you! We are holding up the fort best we can and me, especially, trying to clear my head and get through this last week of school. One of the tracks on John's newest album titled "Age of Worry" has lyrics that go something like this:


"alive in the age of worry,
smile in the age of worry,
go out in the age of worry,
and say worry, why should I care?"

Gotta get down on Friday

Good Morning...

Yesterday was another great day for me.  I spent most of the day with my dad, had time to visit the roof with my new friend Riley and had some visitors in the evening.... thank you.

It was also great because of my many medical advances,  At 11:00 am before my 2nd physical therapy session, I pressed my magic green pain button for the last time.  I transitioned to oral medication  to manage my pain.... I am no longer connected to any IV or device.  In physical therapy, I walked with the walker and I was given some new devices to move leg, more on my own - big fushia stretch band, blue "hook" to grab my foot, etc.  I am amazed that  I am able to be up and walking just 5 days after surgery.

Today I expect have PT again, get up to the roof, have visitors and get stronger.  I was told to start bending my knee to 50 degrees by Monday, so I am doing a little bit each day and it really hurts.  I can't do it on my own yet, but I will get there.

Thanks for the prayers and support.  Love to you all... 

I walked

It is approaching NOON and Emily has had a full half day.

8:00 am Ortho pulled the two drains on her leg, emphasis on "pull"

9:00 am Morning meds, which are down to very, very few

11:00 am Pain Management and Dr. Jones said, "let's pull the epidural".  Emmy said, "okay".  He also wished Emily well, asked her which was her "good leg" and she answered correctly and said, "BOTH".

11:15 am Physical Therapy was back for visit #3 this week and Emily stood at walker and went all the way to the hall.  Many nurses and doctors were passing by and hugging and high five-ing Emily.  Three cheers for the cheerleader.  It was emotional, and we got it on ipad video.  Emily walked on her new leg.  It was emotional for Emily and she referenced this as her first steps, but I think she has taken so many.  This was a significant one for sure, but they all matter.  It was nice Diana, her very first M50 nurse was here, as we NEVER see her much with new assignments, shifts.

11:40 am - Time to pull the "foley" a.k.a. the "pee bag".

11:55 am - Dad walked in and Emily shouted out ... "Dad... I walked, I walked".

Amen.

Post Op 48 hours

We have been busy.

Emily has been working hard and we are reminded that Dr. Joyce mentioned in her pre-op meeting, he would do 2/3 of the work on her leg, the other 1/3 would be up to Emily.  Emily's work has begun.

Moving to the side of the bed yesterday was good.  Today's effort included that + sitting in a chair + standing with two physical therapists, a waist belt and walker.

In addition, she had to mentally prepare herself for what happened an hour ago... the "reveal" and unwrapping + rewrap of her leg dressing. For fear of pain, Emily was double fisting her magic green buttons and the anxiety was building.  Daddy-O, Momma, Mackenzie and Joe happened to all be present, (along with JCU bear with a new bandage on his left leg... thank you Nancy, Regis and Don!)  We were very pleased with how beautiful Dr. Joyce's work is.  Essentially, she has one long incision on the outside of her left leg from mid-quadricep down to her knee.  Her leg looks good in color, size and there is minimal swelling with the two drains that are still in place.  Every few hours the drains are emptied, measured and contents discarded.

As was mentioned in an early, early post in February, there is a wonderful symphony of care.  Emily has three teams that are coordinating her recovery... orthopedics + hematology + pain management.  They all know what the plans are and Emily is good about asking her own questions and feeling comfortable with the path.    Pain management has been balancing her needs with the goal of getting her off of the epidural so both legs can be slightly numb, but there is some more muscle control.   She also needs pain relief that does not completely knock her out so she can be awake and move around.  The hematology (blood) experts are led by Dr. Plautz and Dr. Thompson and they are helping Emily "bounce" back.  Today Emily did receive a blood transfusion of hemoglobin and that is to rebuild her iron and strength of her blood to heal and be full of healthy red blood cells.

Emily had a nice night of rest and looks forward to the same tonight.... her message:

Due to the double fisting pain buttons, I have been kind of loopy, my eyelids are heavy but I am not in pain.  I got really nervous for the unwrapping of my bandage, not only to see it but the anticipated pain associated with the unwrapping process.  I was a little bit overwhelmed when I first saw my tumor free leg.  I quickly realized how fantastic it looks and how lucky I am that the surgery went so smoothly.  I also was a bit overwhelmed by the loss of some muscle in the surgery sight and the potential length difference in my legs.  My doctors and my parents assured me that I would be back to normal, any difference is minimal and would not affect my gait or activity.  I will be healthy again.  I could not be happier that the cancer is GONE!

Thanks again to everyone for asking about me.. caring about my progress and helping my family.

No pain, no gain...

Quick update... from the team + Greg and Johnny...

Emily is doing well with regard to recovery day.  Fran says, "every day will get better".

She is taking great steps forward and has moved out of PICU (Pediatric Intensive Care Unit) to her more familiar M50 floor and friends.

The care has been exceptional and drop by "hello" visits from Brian Smith, Dr. Carl, Dr.Pozeulo, Dr. Thompson and Karl Ertle, made the day fly by.  Doctor of the week awards go out to Dr. Michael Joyce though.  We all praise him and his team for the "strong work" yesterday (thanks Jenn & Jigar).

There has been low grade fever, off and on, which is not uncommon or to be alarmed about at this point.  Emily is drinking lots of water and trying to eat but battles nausea and sometimes loses.    The narcotics are doing good work, but side effects remain.  The epidural needed some adjustments and her right side was numb... whoops... correction with the needle redirected to the LEFT SIDE i.e. surgery leg...Em has two magic green buttons that allow her add on bonus "numbness"  or "pain relief".

Today there has been waves of pain... but so much to gain and she has set her sights. Emily has made great strides and we are looking forward to her next steps.

And now to close the day, a message from Emily:

I am so thrilled to have the cancer out of my leg!!!! I am hopeful and anxious to begin the process of recovery, although, it has already proven to be a tough battle.  The nausea, leg spasms and pain with some discomfort kept me awake most of the night and this morning.  I am so thankful and humbled by all of the love, support and prayers thought this MAJOR milestone. 

NEW GAME

4:10 pm ... Just took the call from Dr. Joyce who said, "Splendid" and ...  "I couldn't be happier"

Emily has not moved out of OR yet, but should be in transition soon.

He was pleased with the procedure and both he and Emily have done well today.  8+ hours in surgery..... to this point, no transfusions necessary.....she will be coming around and waking up soon... we love you Emmy!

OMG... just took a call from her!  We heard her voice.. she is awake and we are going to find her!

Go Emmy... Go!

GAME OVER... CANCER!

2:06 pm update (the only update of the day by the way....)


Momma and Daddy-O had the pleasure to be called to the info desk...


"TUMOR OUT"


"Margins good"


"Closing"


Finish strong... be a "closer" on this Em....

GAME DAY

Emily Evans and Family to the desk..


This is the day the Lord has made, let us rejoice and be glad.


Thank you for the prayers today for Emily and her surgical team.  May God Bless Mike Joyce and the CCF team.


We are grateful...

POWER DAY... pre-op planning

It is MOMMA!  Simply taking over for a quick post before dinner.  We are sorry that we had such a lapse in posts, but those that know us, understand these gaps are to be expected in our busy life.


We left the house at 7:30 am and reported to the basement to Nuclear Testing... nice.  Em received an injection of radioactive high dose of liquid and had to sit around for an hour before it adequately traveled her system.  They took full PET scan of her body which included skeletal and soft tissue reporting.  We don't want areas to "light up", as that reflects inflammation and areas that display abnormal cells.  Em did this on her own, as they did not want us to go in the back for "exposure".  Try as she may, she hoped the technician would report what they saw, or preferably, didn't see.   Of course, they can't make any comments during the scan.  We left there without any indication of how the test went.


We reported to S20 to the hematology clinic for a routine blood draw, proceeded to X-ray for pics of her legs.  Went back up for check up and blood work results and all is well.  Her blood levels are good and in some areas a tad low, some "outstanding".  So, all is right with that.


In the midst of all this, THE POWER WAS OUT IN SOME OF THE BUILDINGS TODAY AT THE CLEVELAND CLINIC.  Not sure how often that happens, but it did present challenges for the next part of our day, which was to meet with Emily's surgeon and discuss his plans, review her MRI from January and compare to the one last week, look at X-ray films the old fashion way, not on the computer.  He was displaced and their team did a nice job fitting us in, in unfamiliar workspaces.  It was important to all of us that we had time to talk through options and understand the outcomes and as Todd says all the time, "manage our expectations".   Kudos to the CCF team to coordinate impromptu offices and sites to keep this care moving forward, not only for Emily, but hundreds of others treated today.


Em signed consent and will report for surgery on Monday, May 14 at 5:30 am.  The plans will roll along and prep her around 7:15 am and she will have about 3 hours in the "resectioning" phase which will remove the distal 2/5 of her left femur and knee joint.  Basically, he temporarily displaces her patella (knee cap) and removes the joint, damaged end of her femur and inserts a rod in her center of femur not damaged with bone cement.  He will resurface her patella so there is a nice protective layer behind her knee cap and then make nice stitches and "put her back together" for another 2 hours or so.  She will lose some soft tissue, some muscle in her quadriceps and tendon.  Basically, Em/we have decided to be aggressive, leave nothing behind and "go for it".  It is simply not worth it to her, or us, or the surgeon to play any guessing games.  She will have some post op recovery, move to ICU and then to a floor in the hospital.  It is expected that she will be in the Clinic for at least 5 - 7 days .... simply depends on how she feels, how her incision looks, etc.  She will have a barstool scar story for sure.... (another one!)


When we left the Clinic the PET scan was still in progress.  After we returned home, her hematology doc called the house and said it was "negative" meaning nothing "lit up" in her skeletal system or soft tissues.  He proceeded to say that the area from last weeks MRI that is "new" tissue did not show any uptake in light and even her tumor area was low in "uptake".  Breathe.


That is our news, that is the news we hope for, pray for, and thank you for your good energy.  I lost my mojo last week and I did not feel good.  So many of you with messages, hugs, cards and prayers have made such a huge difference.  I can honestly say, anyone who faces this type of challenge without the blessing of our level of support is even more brave than our family.  Once in a while I think of people who stand alone in this or do not have access to care and I cry.  We remain so comforted by how we are lifted up.  Everyday we do feel your support and thank you.

The end of one chapter...

I only have a few things to report and I must say, its been one of the best weeks I've had in a long time! This past Thursday, Dad, Joe and I hopped in the car and headed to St. Louis, Missouri! Other than nursing some major mouth sores, it was an easy 9 hour drive and the excitement continued to build! Funny story; my favorite song of all time, Edge of Desire by John Mayer, popped up on the radio right as we began crossing the bridge over the Missouri river, eyes fixed on the Arch. I just cried, it was all that I had been waiting for since the day i had to pick up and leave. 

Reuniting with my friends was a dream come true. It was so great seeing everyone on campus, it felt like I never left. The few days I got to spend back at SLU, I accomplished so much! I got to see so many people, attended my sorority formal (which was amazing!), visited Chaifetz Arena to see the athletic department and where cheered, reunited with my team (they surprised me!), went out to dinner with friends, attended an A Capella concert by Decadence (SLU's co-ed A Capella group and enjoyed relaxing at SLUruba (our outdoor pools, beach volleyball court, and palm trees). Basically, I had the time of my life. Packing up my dorm room was hard because I feel like I missed out on so much from freshman year, but at the same time, it was like I never left. 

Like always, I am completely humbled by everyone I have come in contact with. The kind words, hugs, prayers, and everything, it truly amazes me. I live for little moments like that. It is a beautiful thing to see so much love in the world. I guess I am pretty lucky that I recognize it. 

Life is good right now, can't believe it's the end of freshman year. I miss my "old life" but it was so great to know things will still be the same when I return...whenever that may be. Things may be the same at SLU when I return, but I will be different. So it's the end of one chapter but I'm looking forward to the next one to come. I am looking forward to my last few days with my own leg, as surgery is scheduled for MONDAY, MAY 14th! (It's also Momma's birthday, happy birthday mom! haha). Tomorrow, I am back to the clinic for a check up, a PET scan, and meeting with my surgeon to make the decision on my limb salvage procedure. It is so crazy to think about. The PET scan will tell us if there are anymore tumors anywhere on my body, saying some prayers tonight! I am anxious and stressed for surgery and the next chapter. We never know what to expect, but it's going to be a big change but a good change. I feel like I am finally used to feeling good and getting around easier, and now I am not looking forward to being really immobile and in pain. I am curious to see what it will feel like with my new femur and knee!

Hoping you all had just as great of a weekend as I did and just as great upcoming few days! My thoughts are with all of you finishing up school, and FINALS! Good luck! Much, much love and peace to you all!