Monday, May 18, 2015

How's Kacie?

For the last two years, there are no words that I have heard more often than "How's Kacie?" What a loaded question that has been...Although it is a very natural question for everyone to ask, I would always struggle with how to answer it appropriately. Answering with "she's doing good" would not have been a fair answer. Even on her "good" days, telling someone that she was doing good would not have been an accurate answer and would have given someone the wrong impression.  Relative to the normal person,"good" days for her were bad enough to make most people give up on life.  Should I have told them how she REALLY was? People would cringe if they heard the details of different days she has encountered along the way. When I think of telling people the honest truth about how she was doing on any given day, Jack Nicholson's famous line in A Few Good Men comes to mind. (YouTube it.)  Typically, I have answered with some token phrase like, "she's hanging in there" or "she is taking things day by day" because this was the easiest option and, for the most part, a partial truth. Looking back now, I think I need to share some of the key events and candid details in her journey with cancer and let everyone see just how difficult it was to come up with an answer at the time.

May 11, 2013- "How's Kacie?" Today she had emergency surgery to remove a 17 cm tumor from her abdomen.  It was attached to her ovary, uterus, bladder and rectum; it looked somewhat like the blob, slowing invading her whole abdominal cavity.  She has been battling a fever and severe abdominal pain so removing the tumor should help that; however, when she wakes up from surgery, we have to tell her that the surgeon had to remove one of her ovaries and he is almost certain that the tumor is a very aggressive cancer. Her life would forever be changed after today.

June 5, 2013- "How's Kacie?" Today she was admitted to Nationwide Children's Hospital in Columbus, Ohio (2 hours from home).  She had surgery to place a port in her chest that will be used for chemotherapy.  During the surgery they also did a bone marrow biopsy by putting a long needle in each hip to extract bone marrow to check for cancer and a left lung biopsy to look at ten nodules found there on a scan the previous day. She came out of surgery very sore and with a chest tube.  She is still trying to deal with the fact that she has been told a few weeks ago that she has cancer, cannot return to school and that she has a long, painful road ahead of her. 

July 10, 2013- "How's Kacie?" Well...she has been on chemo now for over a month. The poison being put into her body is causing nausea and vomiting, tiredness, and weakness. She has sores in her mouth and down her throat making it incredibly painful to swallow even her own saliva.  Due to low blood counts, she is spending even the weeks between rounds of chemo in the hospital fighting fevers. When she was at home recently, she went to have her long hair shaved off because it was coming out in chunks on her pillow. 

August 29, 2013- "How's Kacie?" Tonight she is in the PICU at MD Anderson in Houston, Texas.  She is recovering from an eight-hour HIPEC surgery that required a 14 inch scar down the middle of her abdomen.  The doctor removed 52 small tumors along with her one remaining ovary and her uterus.  After I told her about the surgery, she handed me a sticky note on which she had written "so no periods and no kids?" My heart felt like it had been pulled out and run over. 

October 31, 2013- "How's Kacie?" This evening she developed a nose bleed.  After 45 min. of holding pressure on it, we realized it was not going to stop.  We headed to Columbus and it continued to bleed for the whole two-hour trip and for four more hours after that.  They had to call in the ENT doctor on call and he cleaned out the huge clots while she choked and vomited up blood. It finally stopped after he packed it and they gave her two infusions of platelets. Her platelet count was 8,000 and the normal person's is 150,000-300,000. This has been one of the worst nights ever to watch. 

December 25, 2013- "How's Kacie?" Merry Christmas. Kacie is still at Nationwide Children's and has been here for a month already.  She is sad to miss spending Christmas with her siblings at home.  She does her best to remember what Christmas is about and be joyful anyway despite her inability to eat or use the bathroom normally.  She is down to about 90 pounds and the doctors do not know what to do to help her...the fluid building up in her abdomen has to be drained  without anesthesia (eventually four times) and she will be started on IV nutrition called TPN.  She will later realize that she will not be released from the hospital until the end of January and will be on TPN for the rest of her life. 

March 6, 2014- "How's Kacie?" She has been back at MD Anderson in Houston since February for another surgery to try and fix her bowel issues.  Today, just before she was supposed to be released to go home, she threw up and the force caused the contents of her bowel to bust through her fresh incision and into the surgical dressing.  She would later find out that two fistulas (opening from the bowels to the outside of the body) had developed .  She would have several more surgeries to try and close them up but would end up going home after two months with an ostomy bag and no more answers than she had when she got to Texas. 

July 30, 2014- "How's Kacie?" Well, today we met with an oncology surgeon at Ohio State's James Cancer Center.  She had so much hope that he would agree to do surgery on her abdomen to fix the fistulas.  She was told that before he would consider it, she would have to go at least six weeks without eating or drinking anything to see if the fistulas would heal on their own first. How would any of us feel if we got this news? She did do the bowel rest the best that she could only to find out that it would not be successful in closing the fistulas and she would never have hopes of getting rid of the ostomy bag. 

November 21, 2014- "How's Kacie?" Wow. I do not know which day was harder, the day we found out she had cancer or today, the day we found out it is back. Dr. Yeager, her oncologist, came into her room today with tears in his eyes and explained to her that the PET scan showed the cancer was back and had spread to multiple locations in her body.  He said the extent of the disease was too widespread and her body was too weak for additional surgeries; more chemo was possible, but would just make her continually sick and would not be effective in ultimately stopping this disease. She made the very brave decision not to seek out additional treatment and go home to enjoy her remaining time with her family.  The doctor left the room and left us to deal with the aftermath and reality of what we just heard.  She would eventually be signed up for hospice care in December...

April 25, 2015- "How's Kacie?" I don't think her life could get any more miserable than it has been today.  She is having bladder spasms comparable to labor pains about every five minutes which cause her to clench her fists and scream in pain.  These are a long-term effect of whole abdominal radiation she had down in Texas but they are intensifying as the cancer gets worse.  The damage has also caused incontinence and destroyed her bowels so much that she has not had a full meal in over a year. She is also severely dehydrated today so she has an insatiable thirst but since her bowels are unable to accept even liquids at this point, she is throwing up everything she swallows. It is a vicious cycle. She was relieved to find out we had called the hospice nurse who has arranged for her to go to Liza's Place, the inpatient hospice facility.  This would be the third time she would go there...she was not aware that this time she would not come back home.  

In preparation for this blog that had been inside my head for quite some time, I started collecting and documenting all of the medical treatments, events, procedures, admissions, etc. that I could recall.  I also used online records from the hospitals at which she has been treated and I ended up with a ten-page document (which is definitely not a comprehensive list) of things that Kacie has experienced. I knew she had been through more than any one person I have ever known, but looking at it in print was eye-opening; remembering it all was gut-wrenching. There have been two years' worth of painful days that I could have written about, like the sepsis, port accesses each week, PICC line insertion and removal, kidney failure, menopause, depression, seizures, almost 400 days of inpatient stays, and on and on and on.  In the midst of all of this, we had caring, loving, concerned people asking "How's Kacie?" As you can now see, it was sometimes difficult to answer without reflecting the true pain and desperation I was feeling as a mom. I did not want to seem negative or lacking of faith and hope, but on the other side of the cell phone life seemed pretty overwhelming and words did not come easy.  Now that I can collectively look at all the negative and truly painful experiences that Kacie has gone through, I am even more impressed by the amazing things that have happened in the midst of it all. I could just as easily make a list of the things God has done as a result of Kacie enduring what He put in front of her.  He used her bravery and willingness to take us to places and reach people that we could have never imagined.  She has been a faithful servant and He knew she would be; that is why He chose her for this mission.  Because of her relationship with Christ, I can, with peace and certainty answer everyone's question one last time.

May 16, 2015- "How's Kacie?" She is fantastic. She is better than that...she is doing better than anyone I know and better than any of us can imagine.  It is actually hard to put into words just how amazingly she is doing right now. You see, today she took her last breath and was escorted into the presence of her Savior. Today she is free from all the pain and suffering that her earthly body went through. She is free of tubes and needles; she will never vomit again and has no more need for TPN.  God has wiped away every tear from her eye, taking away her memory of all the physical and emotional pain.  I believe that today she was welcomed into Heaven and fell into the arms of Jesus. I wish I could have heard Him whisper the words that she waited so long to hear, "Well done, good and faithful servant...enter into the joy of your master." (Matthew 25:21).  What more could a parent hope for? Today I can answer the question "How's Kacie" with ease and joy because she is finally healed. She will live eternally in paradise and perfection.  She has finished the race; she has been promoted to glory...

For those of us left here on earth, there is sadness and loss.  We will miss her every day but, with pride, will look for ways to remember her and all that she taught us.  We will keep her story alive and her legacy going.  In honor of Kacie, I would like to share some thoughts that are heavy on my heart. Even through our tears, we have a peace today in knowing that Kacie truly is going to spend eternity with God.  I cannot imagine losing a loved one who did not have that assurance.   Unfortunately in our society, we borrow this assurance for every person who passes on no matter how they have lived their life and no matter how far they were away from a relationship with Christ. It is common practice to say someone "is in a better place" at their funeral even though they never wanted anything to do with being a Christian when they were alive.  The Bible is quite clear that things do not work like that.  The end of someone's life is not always peaceful like it was for Kacie...while we were at the hospice facility, a nurse told us a story about a woman she cared for who had visions of a large pit with snakes in it and screamed out "they're coming to get me; they're coming to get me" as she apparently saw demons waiting for her.  Unlike the popular worldview in which everyone is safe the day they die, this is a more accurate representation of what awaits someone who has rejected Christ. In contrast, we know that when a Christian departs from their earthly body, they are ushered into the presence of the Lord (2 Corinthians 5:8) where they will remain for eternity.  I know some people who intend to wait until they are old or nearing the end of life to get serious about Christ.  If that is the case, a terminal illness like cancer would actually be a gift to them so that they may have time to get their spiritual decisions in order.  Unfortunately, not all of us will have the blessing of knowing the end of our lives is approaching so that we can contemplate Christ's offer of salvation.  Many of us will die with no warning and no time to decide in our last breath if we will choose Him. After that last breath, whether by cancer or a car crash, there will not be another opportunity to decide.  You will either experience sheer terror or unspeakable joy. For such a serious matter, there is no room for being politically correct or spiritually wishy-washy.  Not everyone goes to heaven...not everyone goes to a "better place" and we should not pretend that they do if we believe in the Bible. More importantly, don't pretend or assume that you are going to a better place if your life has not been transformed by a relationship with Jesus Christ. Please choose THIS day who you will serve (Joshua 24:15) and do not wait until it is too late. May your loved ones have the privilege of knowing that you are safe in the arms of Jesus when you die.

Even in her darkest of days, Kacie was passionate about sharing Christ with the world. So today, in my darkest of days, thank you for allowing me to share Christ with you. God bless.






4 comments:

Jody Schlapper said...

Wonderful words for a wonderful life lived, from a wonderful mom who loves. Your strength and faith are a true testament to God's love. May His peace bring you comfort until you are united in heaven.

Shari Jaworski said...

Thank you Jesus for giving this family the strength to get through this trial. You now have a beautiful Angel to watch over you. I pray for people reading this who haven't accepted Jesus will accept Him and have everlasting life. God Bless you all with comfort and peace.

Chuck said...

"She has been a faithful servant and He knew she would be; that is why He chose her for this mission. Because of her relationship with Christ, I can, with peace and certainty answer everyone's question one last time." Excellent and true words.

Courts said...

Wow, I know your sister Angie. May God bless you and your family in this difficult time.

Courtney Shakotko