Final Entry #82- December 24, 2003
She is Finished !!! Praise the Lord

Final Entry #82- December 24, 2003 ~~~ She is Finished !!! Praise the Lord

Ariana’s last dose of chemotherapy 12-23-2003

Words do little to capture how we feel today.  I know that sounds cliché, but it is true.  It is joy that is hard to describe mixed with a feeling of disbelief and a bit of fear.  Ariana has been through SO MUCH in her short life, and it is amazing to see it coming to an end.  2 ½ years…31 months….136 weeks….953 days….none of these seem to adequately reveal how much she has been through.  13 hospitalizations, 6 bone marrow biopsies, 18 spinal taps, and probably 200-300 blood draws – these reveal it a bit more, but still don’t tell the whole story.  There have been the "little things" that she has not been able to do (ballet, very few friends, limited public exposure).  There have also been the all too frequent stares at her wearing her mask and the not always kind comments from strangers.  All that is over now.  Today is a day to reflect, to celebrate, and to give thanks.

Excerpt from an my first "mass email" on May 17, 2001, detailing the diagnosis and what to expect:

The treatment course is a little over two and one half years.  There are numerous drugs that are used, with often potentially harmful side effects.  The vincristine will likely make her lose her hair (in a week or two).  The dexamethasone will make her face swell up and can cause mood swings.  The aspariginase can cause pancreatitis.  The methotrexate can lead to cognitive deficits and decreased learning ability.  Every fever will buy us a hospitalization. 

Those are the medical facts.  Rereading them makes us sounds very dismal and hopeless.  On the contrary, however, we are full of God’s peace and hope.  We realize that there are more potential complications than we can imagine.  We also have no idea what our world will look like in a year or two from now.  We feel very strongly that this is something we must take day by day, asking God to be the God of the "present moment".  He has, and will continue to do that we believe.  It is our strong desire to walk through this faithfully.  We do not know God’s plan and purpose here, but we know He is in control of it.  Whether He wants to heal her miraculously, heal her medically, or take Ariana home to be with him before we would like, we want Him to receive glory through the process.  We are not angry at Him.  We are very sad, however.  We are mourning for the parts of her childhood that will be taken away by this disease.  We hurt for the pain that she may go through.  We fear that her precious love for people and vivacious spirit will be changed through this all.  And of course, the thought of losing her is more than either of us can bear.

Rereading that email and many others like it gives us such a sense of thankfulness to God for His faithfulness to us throughout this process.  It is incredible to go back and see how many specific prayers were answered.  Just to name a few from the above email, her hair never fell out (thanks Ed!), her vivacious spirited has never relented, and her mind is amazing.  Beyond these were SO many other answered prayers for specific hospitalizations, procedures and our endurance for the journey.

As much or more than the answered prayers has been the ways that God has used all of this to change us.  We have learned brokenness in a way that I don't know we could have learned any other way.  We have learned to trust God with SO many details of the children's lives.   More than anything else, though, we have learned thankfulness.  We have learned to be thankful for each day we have with each other and the children, especially Ariana.  We have learned to hug a little tighter and a little longer.  The "I love you's" seem to be a little more real and heart felt.  The reality of the brevity of our time on earth has made us love better.  And because of this brief time that we know we have together, it has given us a firmer picture of where our true focus and vision should lie - on eternity.  For Tonya and I, it has given us an eternal perspective in virtually everything, but especially in raising the children.  At best, we know they will only be here 8 or 9 decades.  Sounds long, but it isn't.  They will spend FOREVER somewhere after that.  We want their little spirits and souls prepared for Heaven.  We want each of them to long for nothing more than they long for the love of the Father through His Son, Jesus.  All this has changed how we do virtually everything, maybe not always to an outside observer, but the shift has been internal, in our perspective on things.

"Fear not, for I have redeemed you, I have summoned you by name; you are mine. 

When you pass through the waters I will be with you; and when you pass through the rivers, they will not sweep over you.

When you walk through the fire you will not be burned; the flames will not set you ablaze. 

For I am the Lord you God, the Holy One of Israel, your Savior!"

                                                Isaiah 43:1-3

This is the Scripture that I read to Ariana both on that horrible day 2 ½ years ago as she prepared to go to surgery and 2 weeks ago as she prepared to go again.  I remember vividly the first time I read it having such fear that there might indeed be rivers that would sweep over her or fire that would burn her.  All has not been rosy; we have had our share of snags here and there.  But overwhelmingly she has done so well.  We are so thankful to our Father in heaven. 

It’s funny how time works.  As Tonya and I sat holding Ariana in the post-op area two weeks ago, we were just feet from where we held her back in May of 2001 when she just returned from surgery to have her port placed and to begin her chemotherapy.  The memory of that time was so vivid, it felt like it could have been just weeks ago.  At the same time, though, we have been through so much since then that it seems like another life, one we have nearly forgotten.  Almost everything in our lives has at least pivoted, if not rotated, around the reality of her cancer for so long. Two of our four children have never lived a day that Ariana didn’t have it, and Charis certainly can’t remember a day before then.  This time when I cried, though, it was tears of joy as I saw her chemo port sitting in a cup on the bed.

And so today it ends.  It is time for "normal" life to begin again, I suppose, whatever that is. I really don’t have a good sense of what life will be like without cancer?    I am certain there will come a day when our thinking and actions that we have grown accustomed to will be a distant memory.  Thank God for that.  For now, though, it is hard to imagine.  I wonder how strange it will be to watch the kids play at the park or McDonald’s playground with kids we don’t know who could potentially get one of them sick.  Our life has become very good at avoiding these situations.  I wonder how long it will be before I can kiss Ariana on the lips and not have the consuming thought that maybe I am transferring some virus to her that I picked up from a patient that will be the next infection to land her in the hospital.  When will Tonya and I stop viewing all other kids as potential sources of infection instead of precious little ones?  Or when will I stop viewing all sick patients at work as potential contaminators of Ariana using me as the vector?  These thoughts, and so many like them, are so deeply ingrained in us.  What will life be like when they are gone?

Although the therapy ends today, the trust and faith does not.  In some ways, now is the time for real trust.  Now that her medications are done, we will learn if all that she has been through for 2 ½ years has worked.  The relapse rate is small, but not insignificant (~20%).  Relapse will mean that she will have to go through far worse than she has been through up to this point.  Fear comes with this time, as well.  We pray that the Father’s perfect love will cast out fear in our hearts.  When will this time of anticipation end?  I am sure in the beginning we will panic at every fever or God-forbid an enlarged lymph node or bruising.  I wonder if our guard will ever be let down completely.  Such is the life of trust that God has ordained us to walk down.

So what is next?  I have a piece of paper that outlines the next 10 YEARS of her follow-up.  That’s right, she will be a teenager, almost driving, by the time she is done with her follow up.  This consists solely of physical exams and blood tests.  Most importantly, there are NO MORE PROCEDURES!  We are planning to do all of this in Dallas for the time being.  We will so miss our clinic staff and doctors in Tulsa.  They have become like extended family to us, but we feel like it is time to move forward with our new life here in Texas.

We couldn’t close our "farewell" without giving the highest of thanks to all of you.  Tonya and I are so grateful to each of you all that supported us in various ways.  Whether it was by a quick prayer, a visit to see us, fasting with us, or even crying with us, all the expressions of love have been cherished.  You truly do not know how much they have meant.  There were times that we felt as if your prayers were carrying us.  We would like to thank each of you by name, but honestly there are too many of you to do in an honorable way.  Please just know and receive the incredible gratitude that is in our heart for each of you.  Amazingly, many of you we have never met, but now feel like we know because of your faithful support. We pray that we will meet many of you someday.  This is not the end of all communication from us, but I am thankful to say that you should never see another email with "Ariana update" as the title.

And finally, to the One Who created Ariana….

Father, as I look at Ariana’s angelic face, as I see that beautiful smile and that sweet spirit, I cannot say "thank you" enough.  I was so scared in the beginning of all this that the long term consequences of being "sick" for so long would destroy her spirit.  You made her so strong.  What a beautiful work in her you have made, Lord.  Not only has her spirit endured, but it has thrived.  She is so full of life.  She has so much personality, so much hope.  I beg you with every fiber in my being not to let her have to walk down this path (or one like it) again.  I know You would give grace for each day as you have proven time and time again to us, but even the thought of her enduring that nearly destroys me.

So thank you, loving Father.  Thank you for delivering Ariana from the fiery pit.  Thank you for healing her body.  Thank you even more for drawing her young spirit to Yours.  May she walk closely beside you all her days.  And may she have just enough memory of this time to remember Your faithfulness and goodness.

Thank you, Jesus, for our Ariana Ann.  She is Yours.  Thank you for letting us hold her a while longer.

Craig, one final time, for the DeLisi family

*** You can contact Craig DeLisi directly by sending an email to delisi@characterlink.net