Craig wanted me to write to everyone to give you an update... I'm going to make it short and just give the details...

They are in fairly good spirits, holding up okay so far. Amalyah doing pretty well. Charis, Niyah, and Grandma are hanging out and doing well. Unfortunately, Ariana is still spiking fevers. She has an infection in port. She's on an antibiotic now (some kind of "miacin"), and they may add others later if necessary.  They also may remove her line, which Craig and Tonya would prefer not to happen.
Keep praying.  They're securely in God's big hands, as are we all.
ruth creme

p.s. - just fyi, i think they still won't have access to email until they get back to Pittsburg (so they won't see your replies until then).

Entry 71  August 8, 2003 -Another update on Ariana and the DeLisis

Hi folks,

Ariana has had no fever since yesterday afternoon.  PTL!  So that means she's back on just one antibiotic.  If she has no more fevers, they will get to come back home in a couple days.  However if she has another fever,
they will remove her line, which means surgery and blood draws from her arm every 2 weeks through December, but would reduce the risk of having infections in the port...  Craig and Tonya are still on the fence about this, but would prefer no surgery right now.

Ariana's counts are still LOW.  Both hemoglobin and white counts.  They obviously want to avoid a blood transfusion, so please pray that her counts go back up (especially red cell count).

Her diarrhea is continuing, and Craig still thinks it's a C.diff (i think i got that right or close) diarrhea from the antibiotic.  If so, it's very contagious.  Please pray that the other kids, especially Amalyah who is with them all the time, don't get it.

Amalyah is eating well now.  PTL.

Charis, Niyah, and Grandma spent the day at the hospital yesterday all day long, but it was hard for everyone to say good-bye at night!

Please keep praying, especially for no more fever and no blood transfusion!

thanks,
ruth

Entry 72  August 10, 2003 - Ariana Update- We're Home

Hey all.

Thank you so much for your prayers during our 4 day stay at Dallas Children’s Hospital.   Ariana does have a Staph infection of her chemo port.  Her fever broke yesterday and the cultures were negative for the last two days.  She is now home on IV vancomycin for 7 more days. The home health nurse just left, leaving all kinds of supplies and medications.

The oncologist said that if any of the cultures at the hospital grow out staph, we will have to return to have her port removed.  If she has a fever, we will have to return.  I asked her frankly what she thought the chances of the infection returning to which she replied: “better than 50-50” that it will. In her opinion the port will give us problems from now until the end of her treatment.  That is not news we wanted to hear.

Ariana did remarkably well, despite the fact that both her white blood cell and red blood cell counts dropped lower than they have been in almost 2 years.  She was full of energy and life during the stay (despite a hemoglobin of less than 8), which made it much easier on us.  She was hard to keep up with at times, in fact. Dallas Children’s was incredible.  It was amazingly patient centered for such a huge, major children’s referral center.  Our nurses were exceptional.  We did miss the more personal care of Tulsa, however, especially since in Tulsa we didn’t have quite so many medical students and residents.

Tonya and I are tired, emotionally and physically.  It was VERY hard having all the children there.  While it would have been hard to been without them, it was hard to have them cooped up in a hospital room with us.  Amalyah needed to be fed quite often (as expected), Charis needs more open space, and Niyah has a cold and was a bit fussier than usual.  Thank God we had Grandma.  We honestly could not have done it without her (we barely did it with her).

Despite being tired, we are actually doing better than one would expect.  I don’t think there is anything worse this side of hell than watching your child suffer, especially from something life-threatening.  We would give anything and everything we have to trade place with her.  Even through this pain, however, God ministered His peace to us.  Before we left, while we were so torn about where to go for the fever (Tulsa or Dallas), he gave us a clear Word telling us what to do and assuring us of His Presence.  This doesn’t happen often, but when it did it brought so much comfort and even joy to us.  The other thing that helped us keep things in perspective was watching some of the other families and kids while we were there.  The 2½ year old boy in the room next to ours expectedly died from his cancer one night while we were there.  The suffering we saw as the family members prepared and said good-bye was tremendous.  It made us so thankful of each day that we have with not only Ariana, but the other children (and each other) as well.

our love,

Craig and Tonya

Entry 73  August 10, 2003 Introducing Amalyah Maria DeLisi

Finally, almost 2 weeks later, here is the official introduction of our newest sweetheart, Amalyah.  Amalyah, pronounced uh-mal-yuh (not a-ma-lee-yah) is a name that I (Craig) had in a dream shortly after Adoniyah was born.  I had never heard it or read it to my knowledge.  When I awoke, I told Tonya that I thought that the Lord had given me the name of our next daughter.  She agreed.  Unlike the other childrens’ names, which were chosen primarily based on their meaning, we don’t know what Amalyah means.  The best we can tell, it is a Middle Eastern name meaning “industrious” or “hard working”.  Even though we love the meaning of names, we figured this one was special because it came to us directly from God, not from some book.  We think He may show us the meaning some day down the road.  Maria is Craig’s paternal grandmother’s name.  It is also, of course, the Italian name for Jesus’ mommy.

Amalyah wore us out a bit in her final “in utero”days.  To shorten what could be a long story, let’s just say she kept us in Tulsa for almost 3 weeks (2 of which were premature) waiting for her arrival. She ended up being induced for low amniotic fluid and poor in utero weight gain.  Despite the frustration of being in a hotel with the kids for so long, we really did miraculously see the Lord’s hand in answering specific prayers.  We saw God STOP Tonya’s very strong preterm contractions, which is something that had always progressed to delivery.  He also turned Amalyah from breech to vertex the day after we asked others to pray.  Finally, He made Amalyah a good air breather, whereas her heavier and older other siblings as newborns weren’t so good.

The labor and delivery were also a joy and a blessing.  We got to have our favorite labor nurse for the 3^rd straight time!  Since it was an induction, Tonya got an epidural early (at my pleading), which allowed us both some rest through the night.  We did have one period when Tonya’s cervix stopped changing and we had very bad looking heart tones which made me think she was going to have a C-section.  After I called my mom to pray, the heart tones improved, and her cervix rapidly changed.  In fact, shortly after this, Tonya said that she though she needed to push.  I looked and saw the top of Amalyah’s little head and then ran to get the nurse.  We told her not to push since the room was not set up, nor was the cord blood collection kit. Before Tonya started pushing, she coughed and Amalyah’s head squirted out to the ears.  Two gentle pushes later she was in my arms.  The cord blood collection went well also as far as we can tell.  We will know in a few months if she is a good match for Ariana.

Amalyah has been a good sleeper since she has arrived.  Also, during her awake times, she is very content, whether being held or not.  She is an enormous hit with all the kids.  Charis is so tender and adorable with her.  Ariana is a great big sister, wanting to learn how to change diapers.  Niyah just yells “Hey!  Bae-Bae!” every time she sees her.  It is fun.

Thank you so much for all of you who prayed for us.  I know that many of you are wondering if this is our last child.  We certainly hope that the answer is “no”. While I hope the Lord allows Tonya’s body a bit of a longer pause this time (although she doesn’t really want one), we only hope He decides we can handle another.  We are so thankful for this child and both feel like little children spoiled on Christmas morning to get another one.  Even though raising the kids is a LOT of work, it is paid for countless times daily by the blessings that come with it.  We just say “thank you” to our heavenly Father for allowing us to participate in His miracle of life and His work of leading the “little ones” to His Son

Love,

The DeLisi Six

Entry 74 August 20 , 2003 - Treatment Day 828

Hey all.

Ariana completes her IV antibiotics today (2 full weeks).  We are excited to be able to remove the needle from her port this evening (actually at 1 AM).  We just want you all to please pray that 1. the antibiotics cleared the infection entirely and 2. it will not return.  We will recheck blood cultures in one week.  In my mind, if the infection is not totally cleared, I think we will know sooner than later.  Once again, the doctors in Dallas were not very confident that this would be a permanent cure.  We are just asking the One who heals that it be just that.

Our love to all.

Craig

Ps.  Amalyah is a brutish 7 pounds now.  We’ll email pictures as she continues to bulks up.

Entry 75 August 22, 2003 - DeLisi Ad

This is from Craig...I thought you all would like to see pictures of them more recently that are just precious.  It's Craig in an advertisement for work with Charis, Adoniyah, and Tonya.  You have to have Acrobat to view them. 

PDF File 1
PDF File 2

Love, Korrie

Entry 76 September 2, 2003 -Ariana update - treatment day 840

Adoniyah and Charis helping their big sister feel like she “fit in” while at Dallas Children’s Hospital.

Hey all.

Ariana’s repeat blood cultures are negative as of this afternoon.  Thank you so much for those of you who have prayed for her and the rest of us.

Everyone here is doing well. Amalyah is growing fast (gained 1 pound each of the last 2 weeks), as she likes to eat pretty much continually from 6 PM till midnight or so.  I (Craig) officially started my job here today and am excited about both the people I am working with and the people I will be able to care for. Tonya and l have been spoiled for the last 5 weeks by having a grandmother here for the entire time. Today, Tonya’s mom left us, and we are on our own.  I thought the timing was great with me starting my job today and all. I guess we’ll see if we sink or swim with this whole 4 kids thing.  I think it will be just fine.

Again, thank you all for praying. Here are the ways to continue to pray for Ariana and us as a family:

1. God’s continued healing of Ariana’s leukemia

2. no return of the staph infection of her port

3. wisdom with how to manage contact with other kids, etc until her treatment is completed

4. grace for the family as Craig begins work

5. that as a family we will retain the focus of the things God has called us to (both little and big picture)

thank you.  We love you all.

Craig for the DeLisi’s

Entry 77   September 29, 2003 - Charis Michael is 3!!!

Charis with his favorite possession on our friend’s (Burrow’s) tractor

Hey everyone.

Our little “man cub” is three years old today.  He decided to celebrate his birthday Texas-style this year.  When asked what he wanted to do, he said a “Jupiter Jump and a tractor”.  So that is what we did.  Yesterday, we had his best friend, Josh, and his family over and had a wonderful time jumping on the “House of Bounce” for 8 hours!  Tonya made an impressive tractor cake (I know your surprised), and we grilled hot dogs at his request.  Today, in true Texas form, my nurse at the clinic took all of us to her parents’ farm with chicken houses.  We saw thousands of baby chicks (and smelled them).  Then, we got to ride the coolest thing of all…. their BIG tractor.  To top that off, we took the kids for a quick spin on the four-wheeler (no comments from my pediatrician friends).  The best scene of them all, however, that qualifies us as redneck-wannabees was when “Mama Lucy” (my nurse’s mom) had to drive us on a 2 lane highway to get to her house in the Jeep.  I was in the BACK of the Jeep with Niyah, Charis, and Ariana.  Tonya was in the front, nursing Amalyah, with the dog running around the front seat.  My nurse, Candace, “chased”us with the 4-wheeler close behind. Granted, it was a desolate road and only about a 50 yard stretch, but I was taking a mental home movie to capture this moment as one of life’s precious (and probably very stupid) ones.  You would’ve thought the kids were at Disney World, except with huge, live cows instead of oversized, fake mice and the smell of chicken poop instead of body odor.  To end the day, we had his request for dinner (grits and eggs and cottage cheese) followed by the tradition of watching his birth video with the family.

Charis is our athletic, sensitive chef…a real Renaissance man.  He is gifted in just about every sport toy he picks up.  Just when we think he has a favorite sport (basketball, usually), he’ll surprise us while watching something on T.V.  While we were cooped up in the hotel room in Tulsa waiting to have Amalyah, he was in sensory overload with all the sports channels.  There was ALWAYS something on!  He thought tennis was the greatest thing, shouting “that’s amazing!” every time they hit the ball. He said he wants to play that when he grows up (turns 5).

He is also very fascinated by any food preparation Tonya is doing in the kitchen.  He gets upset if he can’t help.  Maybe he’ll take after his uncle Scotty in that regard.

Finally, he is so sweet and sensitive.  He can’t walk past Amalyah without raising his voice three octaves and shouting, “Hi new baby!” or “Hi Amalyah”.  He also has a hard time walking past her without kissing her.  He always wants to hold her.  We kind of figured that any boys we had would be “cuddlers” because of their daddy, and he certainly fits this bill.  Oh yeah, we’re also trying hard to get him to wear his “big boy panties” (hey…he has a big sister – we’re working on this one).

Here are some sweet Q & A that Tonya did with him a couple of weeks ago.  They’ll give you some insight into the mind of a 3 year old.

(1)     What is your favorite color?  “Blue and green and black and yellow.”

(2)     What is your favorite food?  “Pasta, potatoes, grits &eggs.”  He also loves cottage cheese, but since he is lactose intolerant he only gets it for a special treat.

(3)     What toys do you like to play with?  “Bike, football, balls, basketballs, and baseballs.”

(4)     Who do you like to play with?  “Popi.” (Craig’s dad) Anyone else?  “No.”

(5)     Who is your most favorite friend?  “Josh.”

(6)     What do you want to be when you grow up?  “I don’t know.”  What kind of job do you want to have?  “ughhhhhhh…maybe go up in the attic.”

(7)     What do you want to do for your birthday?  “Dani.  I want her to come to my birthday.  And Popi and Grace and Ethan.”  What kind of games do you want at your party?  “Beach balls, a tractor, and a Jupiter Jump.”

(8)     What kind of present would you like for your birthday? “Maybe a basketball. No, maybe a water football and a water baseball.”

(9)     What kind of party would you like?  “Green and blue.”

(10)What kind of cake would you like at your party?  “Blue & green.”

(11)What animal do you like to pretend to be?  “A lion.”  Why?  “Because I like them.”

(12)Where do you like to go on dates with Mommy & Daddy?  “To Old McDonalds.”  Why?  “Because I like to play in the playground.”

(13)Who do you like to go on dates with?  “Me-Me, Popi and Daddy and Popi and Grandma.”

(14)Do you like being a brother?  “Yah.”  Why?  “Because I don’t know.” 

(15)Do you want to wear big boy underwear someday soon (hint J)?  “Yah!!” When? “When I be grown up like Daddy is a grown up.”  What day are you going to start wearing big boy underwear?  “When I start being a Daddy.”  How about when you are three?  Is that a good time? “Yeah.”

(16) When are you a blessing to Mommy and Daddy?  “I don’t know….Being a big boy.”

 And he is our big boy.  Happy birthday to “our Buddy”!

Entry 78  October 31, 2003  -Ariana update - treatment day 899

Hey all.

Just wanted to drop a quick note to ask you all to please pray for Ariana.  She wasn’t acting like herself this evening and felt a little warm.  We took her temperature and she was running a low grade fever.  She isn’t having any symptoms that would suggest a reason for a fever.  The last time she had fever without symptoms, we ended up in Dallas with a line infection.  To put it simply, we are NOT prepared to go through all that again (not that you are ever prepared), especially without help from family.  If we return for another, she will have to have surgery to remove the line most likely.

On a happy note, the end of her treatment is right around the corner.  The beginning of December we will return to Tulsa for surgery to remove the line, a spinal tap, and a final bone marrow biopsy.  After that, she has 2 more weeks of oral chemo and then she is DONE!  You may hear us shouting for joy around Christmas for this most wonderful gift.  As that gets closer, we’ll let you know more how to pray, etc.

We appreciate your prayers with us to Ariana’s loving Father for His Grace to be given to us yet again. 

Love,

Craig for the rest of the crew

Next message:
Fever was to 101 this AM.  We are going to give her a dose of Vancomycin in my office and draw 2 sets of blood cultures.  Please pray that the fever would cease and especially that the blood cultures are NEGATIVE.

Entry 79  November 2, 2003- Ariana update- treatment day 902

Thank you all so much for praying.  Ariana’s fever subsided after the dose of Vancomycin.  Her  2 sets of blood cultures are negative at 24 hours (a good sign – last time they were positive at 18 hours).  I think she may have had strep throat, and I’m waiting for the throat culture results today.

God is so good.  We thank Him for answering prayer.  We also thank you for being faithful to pray with us.

With much love,

Craig for the DeLisi’s

Entry 80 December 7, 2003- Ariana update- treatment day 931

Hello all.

This Thursday, we traveled to Tulsa for an enormous milestone for Ariana – the removal of her Port-A-Cath. she will have this removed Saturday morning, and at that time will also have her final bone marrow biopsy and final spinal tap.  Following this she will have two more weeks of chemo at home and then she is FINISHED!!!!!!!!!!!!!!!!!

As you can imagine, we are overwhelmed with excitement.  When we first started telling Ariana that we were going to remove her port in December, she was confused.  I remember her saying, “you’re being silly, Daddy” when I told her. When I told her that it was true, she looked at me as if to ask, “why would you take that out of me?  What else are you going to take out?” To her, this has been a part of her I am sure as long as she can remember.  She was just 22 months old when it was put in.

Ariana is finally getting excited about having the port removed and finishing treatment, but for very different reasons than we are.  The main reasons that she is excited are because 1. she can play with other kids (especially at the playground at McDonalds) and 2. because she will be able to take Niyah and Charis’ chewable vitamin (she can’t have supplemental folate right now).  We are excited for more reasons than we can list, many “selfish” reasons for our family and many reasons solely for Ariana.

We are so thankful for this time and ask you all to please pray for her this Saturday morning for her surgery. We’ll let you know specifics when we return.  Also, you’ll be hearing from us as the REALLY BIG day approaches – the day she takes her last dose of chemo.

Ways to pray:

1. NO signs/symptoms of influenza for Ariana (and the rest of us…especially Amalyah) – especially NO FEVER for Ariana

2. successful port removal on Saturday – no significant scarring internally

3. no complications from the anesthesia

4. one marrow biopsy and spinal tap to show NO SIGNS of leukemia

5. that she will tolerate the whole procedure well, physically and emotionally

6. grace for mom and dad watching her have surgery

we love you all and thank you for your support of Ariana and our family.  anyone who wishes to fast and pray with us Saturday morning are very welcome (and appreciated) to do so.

Craig for the DeLisi crew

Entry 81 December 10, 2003 - Ariana update- treatment day 940

Howdy everyone.

Thank you so much to all of you who prayed for us this weekend.  The grace of God was nearly palpable as we walked through this biggest step toward the completion of Ariana’s treatment.  The weekend went very well.  The surgery went without any snags, and we were out of the hospital by 10:00 AM.  The spinal fluid and bone marrow aspirate were both negative, praise God.  Ariana felt a little “smushy” that day, as expected. By the next day, and everyday since, she has been going full speed.  It is always encouraging when the day after surgery someone asks you if they can jump on the bed.  . To celebrate, Ariana wanted “pancakes and steak”.  There weren’t too many places with this combination of foods, so IHOP got the nod.  We even took all the kids there in their pajamas. 

One of the moments that Tonya and I dreaded the most this weekend was when Ariana would be taken away from us to be taken back to surgery.  I (Craig) assumed that I would get to go back with her into the OR until she was put to sleep (since I worked at this hospital just months ago).  Unfortunately, the hospital’s policy was very strict, and I was not allowed.  A friend of ours from medical school in Birmingham did her anesthesia, which was very comforting (thanks Chris!).  One of the nurses from Ariana’s clinic came down to escort her to the OR for us (thanks Rusty!).  It turns out that the Lord answered our prayers for grace during this “goodbye” time in a very funny way.  They gave Ariana a preop “cocktail” to make her relaxed before going back to the operating room.  We knew she would probably act a little drunk, but we didn’t know that she would have very vivid hallucinations!  It was hilarious!  She was playing with things in the air that were not there.  She saw smoke and little “things” running around the room.  Tonya and I were hysterical.  What we anticipated to be a time of tears and heart wrenching (watching her being wheeled away) turned out to be a time of laughter and giggling.  God is so kind to us to overwhelmingly answer even that “small” prayer for us.

Thank you again for praying.  As you can see from the numbers in the title of this email, she is nearly done with her chemo.  She will be completely finished on Dec 23^rd. We will email a final email on or around that day.  We can never thank those of you who have stood beside us enough for your support for the last 2 ½ years.

We love you all.

Craig for the rest of the gang

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