Tuesday, July 30, 2013

Summer 2003 (again) - Devon had been a ballerina

Devon and Drew, Corpus Christi Ballet's Nutcracker 2002

Summer 2003 (again) - Devon had been a ballerina since the age of 4.  During June, they do a dance intensive and dance for hours at a time all week long.  She started complaining that her "knee" hurt.  Well of course it did when you are doing "death drops" in jazz directly onto your knees (without padding).  It didn't look different, wasn't red or swollen, and so we had her elevate and ice it every night.  She didn't dance in July so it was a good rest period but she was still complaining.  However, let me clarify, she was complaining every evening after she had a day at the beach or spent the day running around with friends, jet skiing, being very active...you get the picture and can see why our concern wasn't completely peaked.

(Remember, we're selling our house and closing the end of August - see earlier post).  By the first of August, we decided that we better check out the knee in case there is something wrong that needs to be fixed.  We knew it wasn't a break so an X-ray wasn't needed but an MRI might show if there was muscle or ligament damage.  Scott took her to a friend that is a local radiologist while I went to work. I remember getting a call from Scott on his way home with her.  I was entering items into the computer and really didn't want to be bothered - we were pretty sure it was nothing - and so I was only half listening.  Picture phone held to my ear with my shoulder (yes, the old-fashioned phones!), me working away on the computer, concentrating on what I was doing, and listening, sort of, to him.  I was waiting for key words such as, "It's nothing", "it will be fine," "didn't find anything," and "the MRI was negative."  Every wife has been there and probably a few husbands.  The statement that caught my attention was, "We have an appointment at MD Anderson on Thursday."  My hands froze on the keyboard, "Wait, they're acting like its cancer!"  "It is cancer!", he said.  

From here on, its kind of a blur.  I was journaling back then, too, but inconsistently, so I don't have a great record of exactly what was going through our heads at the time.  In addition, that is one thing that "time" is good for, it usually does heal and help you forget the icky stuff... if you want to forget.  But some things I can't forget - the scene above is one - it's still clear as day and the feelings are still sharp as a knife.  Many cancer survivors say the same thing....they can forget Birthdays of loved ones and their own Anniversary but they never forget the day they were told they had cancer.  

On that day, we began a journey that would forever change our lives.  We were so blessed because it felt like we had someone holding our hands and guiding us through everything as it came up.  We had very little time to research anything.  This day was a Tuesday and we had our MD Anderson appointment on Thursday.  We weren't sure what we were going to do about our jobs and the cost of transportation to and from, and the cost (in general), and about how to care for the younger ones....so many things hanging out there and yet a calmness of being on a path to get it fixed.  Feeling like it was going to work out somehow.  Not that we didn't have tears and fears - many!  In fact, we learned that crying in the shower was the best place to avoid the other kids and when you came out puffy and red-faced, it looked perfectly normal! :)  

So it IS cancer....that ended the ballet career and started her on a whole new life path.  She was 15 years old, one week before her 16th birthday.  I'll stick to my story and hopefully she'll write her own someday. There are so many things that show God was with us throughout the whole process (I'm a planner, but I could not have planned this to run so smoothly had I had a year or more to prepare!) It was definitely a God thing!:
  • The fact that we went to a friend (Dr. Ramos, Radiologist), who called a friend (Dr. Gonzalez, Ortho Surgeon), who got us the appointment that week with MD Anderson Sarcoma Clinic when there was a wait list to get into the Pediatric Clinic.  We probably wouldn't have gotten in as a straight admit/referral to them but we got into the adult Sarcoma clinic right away and Pedi was called to consult.  This allowed us to come in the back door, so to speak.
  • Devon's best friend chose not to go, but heaven sent us another angel to share the burden and lighten the load in Whitney Roessler whose humor provided comical relief - a blessing I will always remember and cherish.
  • MDA was one of the only hospitals doing arterial line chemo therapy right to the tumor, a technique started by our very knowledgeable and world renowned physician, Dr. Jaffe - blessings to have him and his expertise.
  • A gift that we live only 4 hours away from this awesome Texas Medical Center which included the widely recognized MD Anderson Cancer Center.  (Although we followed at our local hospital for crisis intervention and lab work, they did not have the capability at the time to do the advanced procedures to both save her leg and run chemo through an arterial line.)
  • My "sister and brother-in-law" lived in Houston (that's another story in itself of God's hand in my life - more on that later) - blessings to have them, their home, and their spiritual support throughout our never ending journey.
  • Moving date came and we were moved by many co-workers and friends from Luther Jones Elementary and elsewhere.  They literally packed and moved us.  A neighbor, Sandy Destefano, ran the show at the house we were leaving and my mother ran the show at the house we were moving into - more blessings.
  • Chemo was started and Devon was doing well.  Blessing.
  • We had to navigate her school (needed special permission to stay in school with so many days going to be missed).  The Principal and Superintendent granted special permission and teachers agreed to help with course load.  Thanks to all....
  • I had to navigate my work (many days were going to be missed but I  needed to keep the job for income and insurance benefits). Thanks to Galen Hoffstadt, my Principal for recommending using my sick days as half days to stretch my days and generally navigating the system for me when I couldn't think (you know "Galen" when scrambled spells angel). 
  • Thanks to Jeanna Moravits, RN for covering for me during those days.  Thanks to my many Jones friends for bringing the family dinner, when we were in Houston or when we were home...dinner was served every Thursday night for a year by these kind and generous folks.  Blessings and kindness...
  • The chemo continued and the tumor was dying, Devon continued to do well through December.
  • January, 2004 - Devon's tumor was removed and an artificial knee (knee replacement) was put in (limb salvage).  We found that although the tumor had 94% necroses (killed), the 6% that was still alive and kicking were different cancer cells than the two that the first chemo killed.  Result: two new drugs and 12 more treatments were needed to make sure that any cells that metastasized to the lungs would be killed.  This was a major setback!  Where is God? (He's still there, in the details! Read on!)
  • This is the part that reminds me of the story of the footprints on the sand http://llerrah.com/footprints.htm ....it got very tough for Devon and everyone and we wondered how, if all of these people from all over the world were praying for us, why didn't she get better, why was it soooo hard, and was it all worth it.   We were questioning if this drug path was necessary because as it was supposedly killing cancer cells we could NOT see, but it was killing her and THAT we could see!  But we also had a hard time seeing God and yet, I know he was there.  I never doubted his presence for a minute nor lost faith.  If I had an opportunity, I just would have argued his method and timing, and questioned his purpose (humor - always thinking of a better way!)   Before this, I had told many people that it was like someone was holding our hand and guiding us through every step of the way.  I'm sure, like the story, at that point he was carrying us.
  • Beginning of the end - One night I had a feeling - mom's intuition - something was wrong.  Heart problems, then kidneys...story to come later.  Devon quit treatment in August with 4 treatments left; she couldn't do it anymore.  So fast forward through the stopping of all treatments and follow through the years in the coming stories.  I'll throw them in as I think of them.
  • We met amazing, caring doctors, nurses, and staff who are still friends today: from MD Anderson - Dr. Jaffe, Dr. Peter Anderson, Peggy Pearson, Maritza, Dr. Joshua Samuels, Dr. Wagausbach, Dr. Patrick Lin, and from Moffitt Cancer Center in Tampa, Florida - Dr. Doug Letson, Dave Johnson, Jay Seletos, and Joni Stanton,
Her cancer story is hers....I can only tell you my take on it.  It has changed our lives forever in ways that we are only realizing today.  Something will come up, with one of the other kids, and it's clear it affected them, too, as much as we tried to keep the normalcy and shield them from the ongoing horror of a child in chemotherapy 230 miles away from home.  

My story is a story of caring for a child with cancer for 10 years (and still going) with its repercussions (side effects), and of being a wife, mother, daughter, sister, and friend.  I hope in my coming posts to reflect back on these pieces of "truths" in my life - my lived experience, as I incorporate how I feel God has guided us through, specifically me, through all of this "life".  I am reminded of one of my favorite songs by country artist, Darryl Worley, called Sounds Like Life to Me.  http://www.darrylworley.com/  Basically, the verses are about all the griping and complaining of a friend about the woes of his life, much like we all do sometimes - complain about the negative things that happen to us in our lives and his chorus is:
"Sounds like life to me it ain’t no fantasy
It’s just a common case of everyday reality
Man I know it’s tough but you gotta suck it up
To hear you talk you’re caught up in some tragedy
It sounds like life to me."
So again, if you're interested, feel free to read on.  I have been encouraged by friends to start to tell my story, that it may help others, and in my reading, I believe that it is important to share and witness when we think/know God has helped us. 

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