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. 

Selling our second house through Faith and a little help from Mary

The summer of 2003 - First, we found ourselves in a financial crisis....the property value on the home we built in 1994 had nearly doubled as did our taxes.  Two of our largest referral sources for our business had left town and quite honestly I was afraid bankruptcy was looming unless we made some hard changes.  Our Accountant was convinced that we could keep the house (without bankruptcy) if we would cut all of the kids extra-curricular activities....maybe true since we had four kids!  Since the Accountant was my Dad, he knew our intentions when we built the house were to stay in it forever so he was pushing the cutbacks in other areas.  I had trouble with this reasoning because although alot of love went into the planning of this house, my kids lives were going to go forward and who knew when our finances would stabilize again.  To me....their enjoyment and learning from these activities was more important than my now overpriced home.  After all, a home is where my family and the love is - not the address.  I felt confident that we could find an equal sized (maybe even bigger?) home in an older neighborhood and fix it up but it was a gamble.  

As I sat at my vanity, doing my hair, this one particular morning, the stress was too much and I began to cry (not a crier, typically).  I was just so frustrated and lost....confused as to which was the right decision  - including the concerns of 1.) did I want to have to hear from my Dad for the rest of my life how I screwed up, AND 2.) if we listed the house and tried to keep it clean enough to show - with 4 kids - would it sell in time to pay the fast looming deadlines for the creditors?  So as I sat wallowing in self-pity I decided to ask Mary (yes, the Virgin Mary, Mother of God) what her opinion was, reasoning that she was a mother, what would she do?  

A little back story - I converted from Lutheranism to Catholicism in 2000 to keep our family unified.  I really had no problem with Lutheranism, but had agreed to raise my children Catholic and they were getting old enough to question some things within the church teachings.  Specifically, Dillon wanted to know if I was going to Heaven even if I wasn't Catholic - this seemed to be causing him great concern.  One of the big differences in Catholicism, of course, is that we pray to Saints and the Virgin Mary to intercede for us - much like when we ask a friend to pray for us.  I was not comfortable with this piece of being Catholic yet because, quite frankly, why did I need to ask for intercession when I can go straight to the top myself?  I reasoned, if He doesn't want to answer my prayers, then I must not need them answered. However, on that morning, I decide to ask Mary (a mother, like me) what to do....should I sell the "family" home or cut all the extras?... and no kidding....the doorbell rings!  It is Kern Egger, a real estate agent from across the street and she has a probable buyer for my house sight unseen!  And she is asking, would we be interested?  (She knew nothing of our financial situation or that I was considering selling!)  How could we not be interested after that direct and immediate response to my prayer/question?  I believe that would have been the spiritual equivalent to a slap on the Lord's face!  So of course...she needs to officially list it and we set an appointment for the couple to view the house. We get an official offer immediately (the highest offer recorded in our neighborhood) and they want to close in 2 weeks!  This is mid July and so we push back to the end of August, after all, we hadn't even looked at the market yet!  Within 2 weeks, after a few refusals to our offers, one is finally accepted!

Even this house quest wasn't without drama - we were trying to stay within the kids current school district and we had seen everything available.  We were just about to accept an unacceptable alternative (it had a roof and four walls but needed a new roof and lots of work on the inside) when I got online one more time and searched the area.  A house came up in the area we wanted but it had another school erroneously listed as its district!  I had our agent call the owner and a deal was made - and yes, it was a little larger than the one we were leaving - the growing kids would each have their own rooms and the girls and boys would each have their own bathroom - super nice for growing pre-teens!  Meanwhile, our house was going through the normal inspections and our buyer wanted us to fix every little thing - much of it unreasonable - they weren't buying a "new" house, they were buying a "new-to-them" house (it was almost 10 years old).  However, at the same time, we were getting bids in behind theirs and some were even for more than the appraised price, so we were able to say "no" to their demands!  We were selling this house! (Yes, I think it ALL was a God thing - every little bit - guided all through the process.)