Victory:  a success or triumph over an enemy in battle or war

As many of you know, Chase celebrated his 8th Birthday last week.  It was a very emotional and exciting time for us.  His birthday this year represents the closure of a chapter.  The victory over cancer.   The physical reminders are still on his body, but the mental reminders are finally starting to fade from his mind.  He will soon forget.  Unfortunately, I will NEVER forget.

Not many people experience the childhood cancer world as we did.  When anyone is facing hardships and tragedy, they tend to focus on one thing that gives them hope.  It could be a person, doctor, treatment, their Faith, or anything they can grasp their mind around and form a connection.  A connection that shows them that glimmer of hope.  Hope that everything will turn out alright.  No one can see the future.  We can’t see what will happen next year.  But sometimes we find things we can see that will shed light into the possibilities of the future.

When Chase was diagnosed with cancer.  My glimmer of hope came by the name of Patrick Robert Chance.  About a month after Chase was diagnosed, my Aunt Lisa called me and said she met someone whose grandson had Neuroblastoma.  This was music to my ears.  I had not met anyone whose child had Neuroblastoma.  I needed help.  I needed someone to talk to, someone who knew what I was going through.  Soon thereafter, I spoke to his mother.  We traded stories of our son’s diagnosis and she offered much needed advice to the treatment regimen we were about to undergo.  As I learned more about Patrick, I realized how very similar our boys were.  Their birthdays were 5 days apart, they were diagnosed at the same age, their tumor was the same size, in the same place.  Their cancer metastasized to the same parts of their body.  They both had their tumor removed at diagnosis, and the tumors had the same pathologic features.  The only difference was that Patrick was exactly one year older than Chase, and was diagnosed one year prior.  This meant that he was exactly one year ahead of Chase in his treatment schedule.  For me, this was a blessing.  I could see hope.  I could see the future.  I could see where we would be in a year.  Chase’s treatment ended up following Patrick’s to a tee.  As Patrick learned he was No Evidence of Disease, that hope grew tremendously.  I knew everything was going to be okay.  Chase was going to be fine.  Each year on Chase’s birthday, I would always think of Patrick.  I would think about how he is one year older than Chase and that is what Chase would be doing in a year.  This has gone on for the past four years. 

As Chase celebrated his 8th birthday, he also celebrated victory over cancer.  Chase will no longer have scans.  He is considered cured.  As Patrick celebrated his 9th birthday, he too celebrated victory over cancer.   He is also cured.  Unfortunately, his victory came through a different light.  He is victorious.  He is peaceful and free.  He is an Angel in Heaven.  

In the Neuroblastoma world, we hear of children passing all the time.  This by far has been the one that has affected me the most.  It is very hard to grasp.  I know in my heart that Chase is no longer following the same path as Patrick.  But there is that one tight little feeling in my gut that will never go away.   There will always be a little doubt.   There is always the unknown.  No one knows what the future holds.   At this point, the survivor’s guilt is eating away at me.  I want to take all these kids and wrap them up tight and bring them with us on our path to a cure.  I hope that Chase has become hope for other families, just as Patrick was for me.  Patrick will always hold a special place in my heart.  He gave me what I needed, when I needed it most.   Celebrate your victory Patrick!  God Bless you and your family.  Please keep the entire Chance family in your thoughts and prayers.  

Patrick Robert Chance – January 9, 2003-January 9, 2012

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Believe:  To have a firm religious faith;  To accept something as true, genuine or real.

During the holiday season, there are many different things to believe in.  The diverse spiritual beliefs that are celebrated during this season, the magic and excitement of kids and their ability to believe in Santa.  It is the hope, dream and faith of our beliefs being real that help us really focus and get through the rough times in our life.   These beliefs can be simple or  extremely complex.  I have found over the years it is necessary to believe and and have faith to stay strong and get through it. 

There are many different sayings that incorporate the word “believe” and many different meanings and definitions. “Believe in yourself” – This is something that can be very difficult for most people.  It took a very long time for me to believe in myself and my abilities.  Sometimes the most unexpected and tragic life events brings to light possibilities you never thought or imagined.  

As my friend Jonah always says “I couldn’t believe it!”   It’s funny how a “couldn’t believe it” moment quickly turns into a reality.  Even though you couldn’t believe it happened, the fact of the matter is…it really did happen.   At that point….you better believe it.  I couldn’t believe that I was being told my 3 year old son had cancer, but there was not time for me NOT to believe it.  It is what it is and we had to start fighting immediately.  I couldn’t believe it when Dr. Kraveka told me these would be Chase’s last scans.  This moment has taken much longer for me to start believing.  Now that it is over and they all came back clean.  I am starting to believe it to be true.  Doubt and beliefs can sometimes run hand in hand.  There is still a tiny amount of doubt.  Maybe it is a defense mechanism I have placed on myself.  If I let go and say this nightmare is over, something will happen.  It is extremely hard to believe that it is really over.  I have gotten the best Christmas present ever this year.  A happy ending and closure to a long trechourous four year nightmare.   I couldn’t ask for anything more.  Yes, I do believe!!!

“Believe in others” – We could not have gotten through the past four years without each and every one of you.  Our friends, family, church, community and doctors were our rocks and our endless support system.  We depended on the support and guidance of you to help us fight.  To help us keep going.  To help us survive.  There is nothing we can do to thank you enough.  Because of each and every one of you, our family remains together.  We fought the most difficult battle and had the most amazing army on our side.  Thank you all from the bottom of our hearts.

My dream four years ago was for Chase to see his 8th birthday.  That dream is about to come true.  My dream for the next four years is for other children with Neuroblastoma to have the same happy ending.  I truly believe…that dream will come true.

“Keep your dreams alive. Understand to achieve anything requires faith and belief in yourself, vision, hard work, determination, and dedication. Remember all things are possible for those who believe.” Gail Devers

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As the year ends, so does a long treacherous journey that has brought us all to where we are today.  It is very hard to comprehend the direction my life has taken over the past four years.  Would I change what started this journey?  Yes.  In a heartbeat.  Would I change where this journey has led me?  No.  Not in a million years.  My eyes have been opened to an entire world that I never knew, or never wanted to know existed.  I have met survivors, warriors and have gained little angels along the way.  I have met some of the most amazing people and have made new friendships that will last a lifetime.  I have learned of the generosity and selflessness of complete strangers.   These things have made a huge impact on who I have become and my purpose in life. 

As we prepare for Chase’s last set of scans, the scanxiety is 10x greater than normal.  This is it.  Or is it?  In between scans, I was always able to maintain a sense of normalcy.  The security blanket of scans what always right around the corner.  After this set of scans, that blanket will be gone.  The scanxiety is higher for more than one reason.  It’s not just because this is the last set of scans.  When Chase was first diagnosed, the number 8 kept coming into my mind.  When I would think of him turning 8 years old, It made me very anxious.  While in the midst of treatment, I thought it was because I would only have him here with me until he was 8.  I was convinced by the statistics that I was going to lose him…when he was 8.  I have no idea why that number was so adamant in my head….and I still don’t know why, but it scares me to death.  At this point, I feel better knowing he is NED, but I still haven’t come to grips with that number yet.  Is it because at age 8 we are closing the book with the last set of scans?  Or is it because this last set of scans will show relapse?  Or, is it just something silly I have made up in my head?     Chase turns 8 on January 4….As a cancer mom, these are the demented things that run through your mind….and quite frankly it sucks! 

We might be closing a chapter, but the book will never be finished.  I will always be a cancer mom.  I will always be fearful and hopeful.  I will never stop wondering when it will all come crashing down.  I will always have survivors guilt, which in some cases can be worse than scanxiety….especially when our little friends are constantly relapsing and dying.  Our friends need options, they need a miracle.   This is how childhood cancer has changed my life.  I will always chase after a cure. 

Chase’s last scan schedule:

December 13 – MRI, CT, Injection, MIBG short scan

December 14 – MIBG long scan

December 19 – Bone Marrow Biopsy


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It’s been 4 years….

It has been four years since my beautfiul boy was diagnosed with neuroblastoma.  I never entered our first days in the hospital on this blog so I thought today would be a good day to post the entries from those first days.   It has been four years, but it seems like just yesterday….

September 28, 2007

Chase woke up this morning with a stiff neck.  He acted fine, played pretty good and ate good.  After a few hours, I noticed that he was not moving it at all. He would only lay down on the couch and would cry when he got up.  Around noon he started to run a fever.  I started panicking at that point.  I thought for sure he had meningitis.  I called Rich several times and told him to come home.  We went to the doctor at 1:45.  Upon arrival at the doctor, he was still running a fever, but it had started to go down on its own.  Dr. Tillman was very concerned and sent us down to MUSC.  They gave him Motrin at the pediatritian’s office and within 20 minutes he acted fine, but he still was not moving his neck.   After waiting 4 hours in the ER, we were finally seen by the doctor.  They did a CT scan of his neck and blood work.  The CT came back fine and his blood work was good except a high sedimentation rate.  A high sedimentation rate shows that there is inflammation somewhere in the body.  There are many things that can cause this to be high.  About two weeks prior to this, Chase started limping on  his right leg complaining of pain around his knee.  I had taken him in and we had an x-ray done that was negative.   A week and a half later, he started limping on his left leg.  I took him back to the doctor and we did an x-ray of his hips, also negative.  I explained the previous episodes to the ER doctor and they were leaning towards rheumatoid arthritis.  We saw the rheumatologist that were on call that night and they wanted to do a CT scan of his abdomen and hips.  I couldn’t figure out why they would do a CT of his abdomen when he was complaining of neck pain.  It seemed odd to me.  At this point they decided to admit us and run further tests.  They quickly ruled out meningitis because they said he was not sick enough for meningitis.  They did not have any beds available so we spent 24 hours in the ER.   Finally on Saturday evening, we got a bed on 7A. 

 September 29, 2007

We were finally moved upstairs to a room.  We first met Saeed a medical student assigned to us.  He came in and evaluated Chase.  The plan was to admit him and wait for Dr. Ruth to come on Tuesday to examine him.  Tasha Ruth is the pediatric rheumatologist.  The ones we saw in the ER were adult rheumatologists and they wanted the peds doctor to see him.  Dr. H was our attending on call this weekend.  He knew they wanted to do the CT of the abdomen and legs, but disagreed.  He opted for an x-ray of the legs instead.  He came in and pushed really hard all over Chase’s abdomen and couldn’t feel anything.  He thought it was unnecessary for the CT and it was too much radiation for something that may not need to be done.  I still didn’t know why pushing on his abdomen would rule that out.  I was still concerned about his neck.  We did x-rays that night of his legs and hips that came back negative.  He was started on Naproxen for the neck pain and it got better.  Again, they thought rheumatoid arthritis.  Naproxen is what they use to treat arthritis and it was working. 

 September 30, 2007

 Dr. H went over the CT of his neck with the radiologist extremely in-depth.  They could not find anything.  They were looking for any infection or tumors.  Nothing.  So we continued with the Naproxen and waited for Dr. Ruth.

 October 1, 2007

 Dr. Teufel is now our doctor.  We love him.  He is so easy to talk to.  We also have a student nurse who is with us today.  Chase loves to go and play in the Atrium.  He seems to be getting better.  Logan came to visit us today and they played together in the Atrium.  I am starting to feel as though we are on an episode of “House”.  The doctors keep coming in and asking all kinds of questions.  They are trying to put together pieces of a puzzle.  In the meantime, Chase is no longer complaining of his neck.  The fever is gone.  Dr. H. said “This might be one of those times we just shrug our shoulders…and never figure out what it was….could be just a virus.” 

October 2, 2007

We woke up this morning ready to be discharged.  Dr. Ruth was back in town.  We were finally going to see the pediatric rheumatologist and get the answers we were looking for.  In my eyes, they were going to tell us he was fine and we were going to go home.  Chase was in the playroom when Dr. Ruth finally came.  The last thing we wanted to do was pull him away from his favorite place, but this was the moment we were waiting for.  As I walked to the playroom with the pediatric rheumotology fellow to get him, she asked me if there was anything else she should know about.   I mentioned to her in passing that he was getting really sweaty at night.  REALLY SWEATY…to the point of having to change his pillow case several times during the night.  I really didn’t think much of it, but her face went long.  It was then I knew something was up.  We brought Chase back to the room where there were about 50 doctors (not really, but it sure seemed like it).  Dr. Ruth and Dr. Teufel were talking to us and we were going over all of Chase’s symptoms.  She was asking him questions (about Thomas the Train) and was very impressed with his vast knowledge!  I brought up the night sweats again to both Dr. Ruth and Dr. Teufel.  It was then that I first saw “the look”.   I turned and looked at my mother-in-law and whispered “Did you see that look?”  She looked back at me with concern…and nodded.  The entire team of doctors then left the room to discuss things in the hallway.  I knew it wasn’t good.  But WHAT could it be?  Dr. Ruth and Dr. Teufel came back in the room…alone.  They sat down and said “We need to do a CT of his abdomen.”  I thought, “We are back to this again?”  This was what they wanted to do when we were first admitted five days ago.  It was then that I first heard the “N” word.   Neuroblastoma.  What is the world is Neuroblastoma.  I still didn’t associate the “N” word to the “C” word.   They assured me that it probably wasn’t neuroblastoma, but a CT would confirm it.  So this is what they were thinking from the get go, but the symptoms were so vague, they didn’t pursue it until I mentioned the night sweats.  Later that evening, Chase went down for a CT of his abdomen.   CT’s are very quick scans (only 5 minutes) but because he was 3, they put him to sleep to be sure he didn’t move throughout the scan.  They were also doing an MRI of his neck and a bone scan all at the same time which takes over an hour.  We took him into the small room with the anesthesiologist.  I had no idea what to expect.  I had no idea this would be the first of hundreds of times I would watch my son be put to sleep.  I was holding him tight in my arms.  They injected the “milk” (propofal) into his IV.  Within seconds, he went limp in my arms.  This was not asleep limp.  This was dead limp.  The look on his face was terrifying.  His eyes were open, but rolled back in his head.  For the first time since we had been admitted…I lost it.  I turned and ran out of the room.  The following hours of waiting were absolute torture.  Waiting for him to finish scans.  Waiting for him to wake up from anaesthesia…praying he does wake up.  Praying the scans are clean.  Praying this is all a nightmare.  Praying for a miracle.  At 9:00 p.m. on October 2, 2007, Dr. Teufel entered our room.  He was off duty.  Had been home for hours.  Little did we know at the time that he was at home asking his wife if he should come back and tell us tonight…or wait until the morning.  As a father of two little boys the same age as Chase, he knew what needed to be done.  He entered our room and said “We need to talk.  I will have a nurse come sit with Chase.”  We left the room and followed him down the 7th floor corridor from unit 7A to a small conference room on 7B.  It was the longest, quietest, walk.  Little did we know that 7B was soon to become our new home….for the next year.  We sat down in the cold room.  I saw it on his face.  He didn’t even need to say anything at all.  The first words out of his mouth were “The CT showed a mass on his adrenal glad.”  Mass?  MASS?  “We won’t know for sure what it is until we biopsy it, but it is classic of Neuroblastoma.”  The sick feeling in my stomach began creeping up.  I think I actually stopped listening at this point.  I froze.  “In babies neuroblastoma is 95% curable, but Chase is a little old which makes the prognosis worse.”  Old?  He’s 3!  How can he be old?  He kept saying that maybe it wasn’t neuroblastoma because they had to biopsy it, but  I know that he knows.  I can’t believe it.  I am in shock.  My 3 year old son has cancer.

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Golden Yellow Butterflies…

I have only told this story to one person.  I guess I never really knew how to properly explain it, so it was better left in my head.  I told a very good friend of mine after she went through a family tragedy a couple of years ago.  That was the first time I put it into words, and this is the second.  It all started after the sudden death of my uncle back in September of 2002.   In the days leading up to his funeral and the weeks following his passing, I started seeing golden-yellow butterflies.  I am sure these butterflies were always there, but went unnoticed.   It wasn’t really about seeing the butterflies, it was about WHEN I would see the butterflies.   It seemed I would only see them when I was alone, driving in the car…thinking about life and death…and WHY?  Yellow was never my favorite color.  In fact, I didn’t even really like the color yellow, gold, or any variation.  But there was something about these beautiful butterflies that gave me a peaceful feeling.  I felt like they were trying to tell me something.  I just didn’t know what that was.  As the sad feelings about my uncle’s death started to fade, so did the sightings of the yellow butterflies.  But without fail, every September…they would return.   About six months after my uncle’s death, I found out I was going to have a baby boy.  It was apparent what his name was going to be…”William Chase”.  He was named after my uncle.  Within the first two years of his life, I lost both my grandmother and my aunt.  But without fail, ever September…the golden-yellow butterflies would return, and so would the feelings of peace.   As Chase began talking and blossoming into a toddler, he too would see these butterflies.  But he didn’t know what they were.  One September day in 2007 we were outside and there were a couple of butterflies on a bush fluttering around.  Chase looked at them and said “Mama!  Angels!”  I really didn’t think much about it except how cute it was that he called them angels instead of butterflies.  By the end of that September, Chase was admitted to the hospital and subsequently diagnosed with cancer.  After his first chemo treatment, we were able to come home.  He spent some time (as much as he could) playing outside.  I would just sit and watch him.  Watch him enjoy life while thinking…this could be it.  This could be the last time he plays outside.  One morning, he was playing outside and I looked over and there were three little butterflies fluttering around him.  He looked at me and said “Look Mama!  The Angels!  The Angels are around me!”   At that point, I knew who those three “Angels” were….and YES they were around him!   There are so many unknowns in life, especially in the cancer world.  We have to live in wonder, worry, and fear of the unknown.  Fear of changes.  But over the years there is ONE thing I could always count on.  Every September, without fail, the golden-yellow butterflies would be there for me.  It has taken me a very long time to come to grips with WHY these butterflies have become so important to me.  And WHY golden-yellow butterflies…the only color in this world I really didn’t like very much.  I always thought it was because my uncle passed away in September.  Then it was because Chase started getting sick in September…and was then diagnosed with cancer.  I knew they brought peace and security to my life, but I didn’t now why.  What were these beautiful creatures of God trying to tell me?   It was just yesterday, September 1, 2011, when it all came together for me.  I was driving up to the school to pick up Erica.  I hadn’t even started thinking about or seeing the butterflies yet.  I was thinking about the month of September and what it means to me now…and how I can go about bringing awareness to everyone and make it mean the same for them.  It was as I was having these thoughts when a single golden-yellow butterfly flew across my path…and it hit me.  September is Childhood Cancer Awareness Month…and the color for Childhood Cancer is gold.  Now, my beautiful golden-yellow butterflies that I see every September have a brand new meaning in my life.  They represent the children.  The 46 children who are diagnosed with cancer EVERY day.  The 7 children who die EVERY day.  I have to wonder… is that what these butterflies have been trying to tell me for all these years?  Next time you see one…what will it mean to you?

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Chase on the Hill!

We were in Washington over the past few days with the National Association of Children’s Hospitals Advocacy Day.  Chase was representing South Carolina and MUSC Children’s Hospital.   It was an absolutely amazing experience!  Chase met with the South Carolina delegation to express the necessity of children’s hospitals and how important MUSC Children’s Hospital is to South Carolina and to our family.

On Sunday morning, we flew up to Washington.  The pilots even made our flight special!  They announced Chase’s presence on the plane and told the passengers to ask Chase if they had any questions.  When we got to the airport, the pilots let Chase sit in the cockpit and showed him how to fly the plane.  He was so excited! 

Monday consisted of breakfast with the other NACHRI families followed by a short tour of DC.  We went to the Lincoln Memorial and the Air and Space Museum…both of which were perfect for Chase.  Erica kept talking about the “pool” that was behind the Washington Monument and in front of the Lincoln Memorial.  She wanted to see that pool!   However, when we got to the Lincoln Memorial we found out it is no longer there!  Apparently, it got really gross over the years and they had to remove it….so all we saw was a big hole of dirt.  Exciting.   We joined the other families from across the country for lunch at the hotel.  Chase entertained our table with his ninja “costume”.  He tied a red napkin on his head and around his mouth.  He wore the napkins for the next few hours.  Yes, HOURS!   It was only until the “surprise” visitor came into the conference room that he took the napkins off.  The surprise was the one and only Miranda Cosgrove (Nickelodeon star from iCarly).  Both kids were EXCITED!   NACHRI did such a great job of keeping the kids engaged and offering such an amazing experience.  The dinner Monday night included a band, yo-yo master, magician, toys, smoothy bar, ice cream stand, face painting…pretty much anything a kid could ask for!  

Tuesday was back to business…and a BUSY day at that.  It started with a perfectly planned out schedule of visits to five of our congressman.  That went out the window after our second visit!   Our first stop was Rep. Jim Clyburn.  He was such a nice man.  He spent a lot of time sitting with Chase and I reading the picture story book we made of Chase’s time spent at MUSC.   Our next stop was with Rep. Trey Gowdy.   He removed himself from a meeting just to come out and see us.  He sat down on the floor with Chase and spent a long time talking with him and our family.  He then invited us to come down to the floor of the House so Chase could go in with him and cast his vote!!!  What a unbeliveable opportunity!  This is the event that changed the rest of the day.  We ended up at the capital building and Congressman Gowdy came out from the floor and brought with him Tim Scott, Jeff Duncan and Mick Mulvaney (all five are Freshman Representatives from SC).  They visited with us in the Rayburn room outside of the House Floor.  Congressman Gowdy then took Chase inside to vote.  He showed him how the voting takes place and gave him some voting cards to keep.  Afterwards, Tim Scott and Trey Gowdy took Erica in to see the House Floor as well.    They were all very engaging and stellar men.  It was a pleasure meeting them!   

Wednesday morning we went and met Senator Lindsey Graham.  It was so nice of him to squeeze us in between his live interview on CNN and his committee meeting.  Wow!  What a busy man!  He was in a hurry, but didn’t show it.  He took the time to talk with Chase and listen to our story about the children’s hospital.    Afterwards, we took a tour of the White House (thanks to Tim Scott’s office for setting it up!).  They were filming an interview with Michelle Obama for Extreme Makeover Home Edition.  If you watch the episode with the White House, look up on the second floor window, if you see a little fuzzy head looking out…it is Chase!

I want to thank MUSC Children’s Hospital and NACHRI for inviting us to participate in such an amazing experience.  We are truly blessed to have been a part of it.  I wish every day Chase didn’t have cancer, but to be able to give back and help those who helped him and our family is an amazing feeling.  We are honored to have been chosen and hope our visit to the Hill keeps the funding going so we can keep our children’s hospital!  Check out the Photos of our trip!!



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The end of the “cancer” world…as we know it.

Six months came and went faster than I ever imagined.  I thought scanxiety would get the best of me waiting so long to take a look inside his little body.    For those of you who have never experienced scanxiety, you are the lucky ones.   There are very few words that can describe the feeling.  The waiting.  The wondering.  The fear.  The fear that today is going to be the day that the monster returns us to the treatment world.  This is a world that hopefully is forever in our past.  In typing this, I can’t help think about those families and children who are still fighting and those who are losing and have lost their treacherous battle with the ugly monster called neuroblastoma.   When Chase was diagnosed it was very hard for me to look at other healthy children.   I would look at them think how unfair it was that Chase had cancer.  Why Chase?  Why did my beautiful healthy 3 year old have to have cancer.    After being violently thrown into the cancer world I now have those same feelings again, but in a different way.  I’ve been lucky enough to meet many other neuroblastoma families.  Most have children who are still fighting or have lost their battle.   I ask myself the question again.  Why Chase?  I feel so blessed that he has done as well as he has, but there are also feelings of guilt.  Why is it that my child is one of the small group of survivors and so many other children are dying?  The reason all these feelings has surfaced once again is because we were told that Chase will need only one more set of scans…ever.  This is a somewhat terrifying turn of events for me.  I can’t imagine not being able to physically see on a set of scans that there really is no cancer in his body.  Scans are my security blanket.  In reality, it is a good thing.  Obviously, they feel as though he has beat this monster and the risks of the radiation exposure during scans is greater than the risk of the cancer returning.   Since the scans he had last week were all clean, they will do one more set this December….that’s it!    The end is in sight.  The end of a long terrifying journey that no family should ever have to face.  The end of the “cancer” world as we know it.  So what happens now?  We continue to fight for all of the other children who are still in treatment and who are quickly running out of treatment options.  We continue to “Chase After a Cure“!

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