Entry 53 July 25, 2002 Ariana's 3rd Birthday

Praise the Lord ~ Ariana Ann is 3 today!
“Before I formed you in the womb, I knew you. 
Before you were born, I sanctified you.”  Jeremiah 1:5

Another year has flown by in the life of our precious daughter.  It seems like yesterday we were celebrating God’s gift of 2 years at Braden Park with family and friends.  We were watching some video from that time, and we can’t believe how much she has grown into a young lady since then…

Lets start by saying what a sweet spirit the Lord has given her.  She is the “big sister” in many ways, but overall she is a shepherd like her daddy.  Yea, she is bossy too, but she is always looking out for Charis, Adoniyah, and anyone else who is over.  She has a gentle spirit and loves nothing more than “getting cozy” on the couch and reading books or watching a video (of which, Steve Green’s “scripture video,” “Blue” and “Dora” are her favorites).

We asked Ariana if she wanted a picnic at the park for her birthday party this year (like last year), and she replied, “No.  I want my pink birthday with the horses, and a cookie.”  Translation :  Ariana wants to ride the carousel and have a sprinkle cookie from the mall.  So, we are.  We made it into a “Blue’s Big Treasure Hunt,” since this is her favorite video.  She has planned out her next few birthdays:  This year is “pink,” and she wants pink Chap Stick as a present.  Next year is “purple,” and she wants a violin (She said she is saving her money to buy one).  Then comes “yellow” and “orange.” 

She is such a negotiator.  A simple answer is never enough for her.  At her request, we must always explain our decisions and statements.  This can be exhausting, but mommy is reminded of herself in this.  By the same token, she always explains herself to us.  For example, we were baking banana muffins a few days ago and she was asking mommy to let her do it by herself since Charis was napping, and she said, “Can I do it by myself?  You know I am a good bakery.”  A few days prior mommy was running to the store quickly and asked if Charis wanted to go since daddy and Ariana were playing.  Ariana came running to the door exclaiming, “No, Charis can’t go.  I want to go.”  Mommy asked her why Charis couldn’t go, and she paused.  Then looked around, and quickly said, “Charis doesn’t have shoes on, and I do.  The ground is too hot for Charis’ feet.”  Daddy and mommy just laughed at her logic.  Needless to say, they both went to the store.

It is amazing to see the “lady” in her separating her from her brother and boy friends (like Joshee).  She doesn’t like rough play and simply tolerates her daddy during wrestle time….mainly because this nightly activity extends bedtime.  She loves crafts and always asks to help and watch mommy with anything she does.  Something you may not know about Ariana, is that her favorite store (besides Target for the  “I-C-A’s” or Icees and Reasors for the “little carts” or child-size shopping carts) is the fabric store.  She gets so excited with giggles and loud shrilly talking when she sees all the colors and textures.  We have to touch most of the prints and buy at least one spool of loudly colored ribbon before we leave.  It is a joy to watch this.  Her Sangootz would be so proud to see her, as she was a seamstress herself.  Mommy has a pair of pajama pants that are a satin pink flower print, and the first time she wore them Ariana touched them saying, “Ooooo those are nice pants mommy.  I like pink too.”  Interestingly enough, no one else in the house noticed them.  Ariana also loves to pick out her own clothes (usually 3-4 times a day) and wear all her jewelry and dress up shoes.  A dear friend, Elizabeth gave me a quilted table top for our dining room table , and Ariana loves it.  She took it off and put it on her little table.  Of course, Charis was right behind her trying to throw it on the floor and jump on it (which by the way, he is a GREAT jumper and we will tell more in September when he turns 2).  Ariana exclaimed to him in tears…. “Stop Charis, it makes the table so pretty”…and she put it back on.  We found a pretty cloth napkin that she uses now so Mommy could put it back on the big table.  How we love her attention to detail!

Ariana is a “whipper-snapper” when it comes to learning, but it must be on her own terms.  Mommy wonders how well home-schooling will be since this is an issue of “control” for her…..we’ll keep praying since we do have a year or so to go……We’ve been trying to learn some  flash cards with words on them.  She recognizes 20 or so, so mommy wanted to add all the names of our immediate family.  Mommy wrote them all out and was planning to start with her favorites:  Mi-Mi and Grandma.  She insisted that I show her the other cards too.  We were sitting on the step waiting for daddy to arrive home from work in about 10 minutes.  By the time daddy got home, she recognized all 15 of the new cards.  She proudly showed him……yet, when mommy attempts to structure a time of “learning” it is a little more difficult.  Mommy and Daddy have learned to just seize the moment.

Ariana’s chemotherapy treatments and weekly trips to “her clinic”to see Kathy and Diane, wearing her mask, and taking her medicine at night are as much a part of who she is as the other things written above .  We don’t even think of life any differently.  As a result of God’s grace she is as confidant with who she is as any other 3 year old, and we are too.  We are simply in love with Ariana Ann who loves playing at the many Tulsa parks (and has her own names for each of them), having a  “special treat” on Sundays (the only day she is supposed to have sweets), getting “so excited” at the simplest joys, and truly wanting to please her Mommy and Daddy.  We pray she will ultimately get “so excited” about serving Jesus and wanting to please Him.  We can only imagine the exponential joy this will bring Him as her Father.

We can’t forget to tell you that Ariana loves company.  From Jerry, the mailman, Joshee, Lilly, and Lucie her bestest buddies, to any new playmate at the park, she loves to meet and play with fresh “energy.”  So, if you are traveling on Route 66 just turn left on Canton Avenue and come on by.  She’d love to snuggle on the couch and read all 50+ books with you too.

Happy Birthday to our “Munchkin” …..Love, Mommy & Daddy.

Happy Birthday to my “Ana”….Love, Charis. 

Drooly Kisses….Love, Your “Niyah”

Entry 54- A letter from the Spiveys

This is from some dear friends of ours from high school and college.
Craig and Tonya

Heeey yooou guyyyyys!

How are things? We hope this finds you all doing wonderfully...

As most of you know, a year ago this Mothers' Day Craig and Tonya DeLisi discovered that their oldest daughter, Ariana, has Acute Lymphocytic Leukemia. It has been a prayer-filled year. We all took part in the rejoicing around the country in June of last year as Ariana went into remission!

Inspired by Ariana's struggles and victories, we have volunteered with Team In Training to raise money and awareness for the Leukemia and Lymphoma Society. Team In Training is the world's largest endurance sports training program and the Society's premier fundraising event. Since 1988, Team In Training athletes have raised more than $300 million to fund blood cancer research and patient support services! Aaron and I have together committed to raise $3,600 in sponsorship funds.

This is our first triathlon -- so it's bound to be an adventure! (And, no we have not become Super Athletes since we last saw you... it's going to take some serious work) We take part in weekly group runs, bikes and swim practices. We have decided that swimming is by far the most challenging part. After drills, laps, more drills (and more laps!) we have a HUGE new respect for swimmers!!!

Tonya told us recently that Ariana loves to run in the drive way and yell "I'm running for exercise!" With inspiration like that, how can we not succeed?

Here's how it works: we'll do the swimming (0.6 miles), biking (18.6 miles), and running (5 miles), and you can help cheer us on by sponsoring us!  With your contribution, important research will continue toward a cure for this disease! Please join us by making a check payable to the Leukemia and Lymphoma Society and returning it ASAP (no later than August 20, 2002). All contributions are tax-deductible and no amount is too small or too large!

Love and hugs from Atlanta,

Aaron & Olga
www.teamintraining.org 

Entry 55 August 28, 2002 - Treatment Day 470

Hey everybody

Our little lady goes for another procedure tomorrow.  She has her 3 month spinal tap with chemo.  She has been doing remarkably well.  Her newest love is “going to school”.  Tonya started “schooling” her more formally this past week.  Ariana loves it.  She wears her little backpack and goes to the “classroom” (our guestroom).  It has been a hoot watching her very independent mind at work.  For those of you who know Tonya, it isn’t hard to figure out where this came from.  She likes to do things her way, and is learning how to follow directions, even if they don’t make all that much sense. 

I (Craig) have been on a pediatrics rotation at the hospital that Ariana was hospitalized at so many times last fall and winter. We usually don’t rotate here, but I chose to come.  I wasn’t very prepared for how hard it would be, especially the first week or so. It was a very strange feeling being there.  Little things like smells or sites would trigger a rush of memories and emotions.  It is almost surreal taking care of patients in the same rooms that we were patients in.  The second day on the rotation we discharged a girl with Ariana’s diagnosis (ALL) to go home on hospice to die.  Granted, there were major differences in some of the specifics of her illness, but it was very hard to experience.

The Lord has powerfully orchestrated my patient population this month.  He has let me be the primary physician taking care of not one, but TWO newly diagnosed cancer kids, one with a brain tumor and one with ALL (as well as probably 5 or 6 other cancer kids).  Childhood cancer is not very common.  There are only about 2000 kids yearly diagnosed with leukemia, so statistically, it is unusual to see a new one.  The girl with ALL was in the same room that we were in when Ariana was diagnosed.  It was eerie.  I have had to leave patients rooms more than once to go out into the hall and cry for a few minutes.

For ariana’s procedure tomorrow, please pray for safety of anesthesia administration, skill of the doctor’s hand, and no side effects from the large dose of methotrexate.

Thank you all for your continued prayers.

Craig for the DeLisi’s

PS.  We finally got the results of Adoniyah’s cord blood match results back.  She was, unfortunately, NOT a match.  That’s okay, I pray we’ll never need it.  Besides, we might just have to produce some more donors.

Entry 56 February 10, 2003- Treatment Day 641 

Ariana has another spinal tap with intracthecal methotrexate this Thursday.  She has not been doing any better with her appointments (as far as being afraid goes).  I don’t think she is ready to try it without anesthesia yet, which is quite okay with me.  Please pray for “the usual” – peace for her (and us) and no complications from the tap or anesthesia.

As we wind down our time in Tulsa, we are looking ahead to how much treatment she has left.   Best we can tell, she has approximately 8 more months of chemo (orally, IV and in her spinal fluid), 5-7 more spinal taps, and 1 or 2 more bone marrow biopsies.  That is quite a bit.  We are still figuring out if our new insurance in Texas will let us come back here for her procedures (only 4 hours).  We really hope so.

Hope you all are doing well.  May our Lord bless each of you.

Craig DeLisi, M.D.

Entry 57 February 15, 2003 Treatment Day 645

Hey all.

Thank you for praying for Ariana. Her procedure was today (I mistakenly said Thursday) and she did remarkably well, especially in the fear and anxiety department. We truly felt your covering.

After the procedure, we always take Ariana out for lunch or a special treat of some kind. Today when we asked her what she wanted, she replied “STEAK! STEAK! STEAK!”. “From where, Munchkin?” ”The OUTBACK!” was the response. How about that. Most kids love Happy Meals and McNuggets. She’s got pretty expensive taste, I must say.

So, to make a long story short, we went. We actually went to Outback on VALENTINE’S day for dinner. I put our name on the list at 5:30 and we were promptly seated to our table at 7:30. No kidding.

Before the meal while we were standing outside, Tonya mentioned that Ariana could use some of her Valentine’s money that some family sent her to buy a little toy or something. “No, I just want to buy meat” was her answer. She certainly keeps us laughing.

I hope you all had a Valentine’s Day that was even better than ours.

Craig

Entry 58 May 1 "LOOK WHO"S IN PRINT"

Hey everyone.

Just a quick note to let everyone know that "Ariana's Story" was just released in Focus on the Family's Physician Magazine. I submitted the one year anniversary email that I wrote last year for publication at the suggestion of one of my attendings, and it was accepted. I just received it tonight from a friend who subscribes to the magazine. It turned out pretty well despite the heavy editing (I was too verbose “ go figure!).

I am not sure yet how any of you can obtain a copy if you want one, as they send it exclusively to physicians. In fact, I am not even sure how I am going to get some copies for myself. A starter may be to view it online at http://www.family.org/physmag/.  This is the text version without the pictures. Hopefully the link will work.

Here is a scanned shot from the table of contents.

Craig

Entry 59 May 6, 2003 Treatment Day 722

Hey everyone.

The little celebrity has a procedure this Thursday morning. She has a spinal tap with chemo infusion.

Please pray for a good procedure with no complications. My prayer as I give her her medicine at home every single day is that it would “do her good and not harm”. Please pray the same for this. Also, no problems or complications with the anesthesia.

We also ask that you please pray for favor and guidance for what to do about her treatment as we move to rural Texas. we really want to finish her treatments out in Tulsa, but as of now this is not covered under our new insurance. There are also huge challenges regarding how to manage fevers, etc while in Texas hours from a children’s hospital.

If any of you are interested in a hard copy of the article just published about her (it is much prettier than the online version), you can call Focus on the Family at 1 800 232 6459. I believe that they will send you a copy for FREE. At least, that is what they told my dad.

Craig