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Acute Lymphocytic (Lymphoblastic) Leukemia

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To help navigate through the entries made to this site, we have created links to each of the entry days.

Entries 1- 8 have moved to the DeLisi Email Archives
Entries 9-18 have moved to the DeLisi Email Archives Page 2
Entries 19-27 have moved to the DeLisi Email Archives Page 3
Entries 28-39 have moved to the DeLisi Email Archives Page 4
Entries 40-47 have move the the DeLisi Email Archives Page 5

Click to read a Birthday Letter from Ariana & See a Birthday Photo

Entry 48  January 28, 2002 Introducing Our Newest Daughter
Entry 49  March 11, 2002 Treatment Day 293
Entry 50 March 21, 2002 Treatment Day 303
Entry 51  May 13, 2002 ONE YEAR
Entry 52  June 11, 2002 Treatment Day 393

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"Because Your love is better than life, my lips will glorify you. I will praise you as long as I live, and in Your name I will lift up my hands." Psalm 63: 3-4

Born January 23, 2002 at 7:28 A.M. weighing 5 lbs 15 oz and 19 ¼ inches long.

Adoniyah is a Hebrew name that means, "God is My Lord". It is an alternatespelling of Adonijah, one of King David’s sons. Irene is a Greek name that means "peace", but was chosen because this is the name of Tonya’s precious, godly grandmother who passed away approximately ten years ago. As you can tell, we didn’t have to choose a boy’s name. This came as quite a relief to us both, although we do appreciate the MANY name suggestions that came in those late, panicky days. Our favorite suggestion was a hybrid name from Ariana’s "Moses" and Charis’ "Elmo". We just didn’t think "Elmoses" would fit as well for a pretty little girl.

There were so many little things the Lord answered for us going into and surrounding the labor. Tonya’s contractions started the same day that she finished doing all the "getting ready" stuff around the house to prepare for the baby. Another resident called that day and asked to work another day of my night rotation. Otherwise, I had to work Thursday night. We went into real labor the night that my mom got here (shewww) and in time to go hear John Perkins speak at our residency’s winter retreat on Saturday. John Perkins is one of my spiritual heros, and I had been looking forward to this for months. We ended up delivering in the same room as with Charis, and even better is that we had the same nurse! This last thing was a neat conformation that God was controlling it all because we absolutely adored this nurse from our time with Charis, so much that we considered hiring her individually to be there for our labor. When we walked in, she came up to us and told us she would be our nurse (she didn’t remember us from last time, either).

This was, by far, the most fun delivery we’ve had yet. Ariana’s was a little scary because her heart tones looked bad and they had to use forceps emergently. Charis’ was fun, but I was a little nervous delivering my own child for the first time (I also hadn’t done nearly as many deliveries at that point as I have done now). This one was much more relaxed and fun. There was a really lighthearted mood mixed with anticipation of whether it was a boy or a girl. Tonya did awesome, only pushing two times during one contraction. We were all joyful and relieved to hear me say, "It’s a…..GIRL!!!! (shewwww)". There were a couple of nursing students there who asked if they could watch. They didn’t realize I was Tonya’s husband (probably until I kissed her). One of them told me afterwards that she thought I was just a really involved OB who loved children.

The umbilical cord blood collection went well as far as we can tell. It may have been a little on the skimpy side because Tonya’s placenta separated rather soon after delivery. We will know in a few days whether there were enough stem cells present (these are the ones that matter). Assuming it is an adequate sample, it will take 3-4 months before we know whether or not Adoniyah is a good HLA match for Ariana. I feel very strongly (for no good reason – just like her gender) that if the sample is good, she will be an excellent match (at least 5 of 6). I don’t know why, but I am just confident of this. Please pray that it: 1) was an adequate sample and 2) is a good match.

Much like her older brother, Adoniyah decided that she didn’t want to make a smooth transition from fetal to neonatal respiration. Within minutes of her birth, it was obvious that her and air just weren’t getting along too well yet. She was grunting, flaring her nostrils, and breathing very hard and very fast (100 – 120 times/minute). We took her right away to the transitional nursery to see if she would stabilize on her own after some oxygen and observation. They really pushed the limits of what they were supposed to do (partly, I’m sure, because I work there), but Adoniyah did not cooperate by doing what she needed to to avoid the ICU. The morning of the 24th (just over 24 hours after birth) they transferred her to the neonatal ICU. Tonya and I were crushed. It wasn’t so much that we were worried about her – honestly, we just suspected she would take some time to turn around, maybe just a bit longer than her brother did. We just hated the idea of beginning her life as an ICU patient. That meant, initially, no holding her, no more breast feeding her (which Tonya had already started), a couple of IV’s with fluids and antibiotics, lots of blood work, a chest X-ray, and, worst of all, a potentially long hospital stay. It isn’t fun to be discharged before your baby, let me tell you. The emotional exhaustion of Ariana’s hospitalizations that we thought we had seen the last of was right back in full force. We felt like we had little reserve to deal with this. Fortunately, the Lord was merciful to us.

She turned the corner, so to speak, the first night in the ICU. They allowed us to hold her, bottle feed, and then breast-feed her the following day. They gave her 48 hours of IV antibiotics and then discharged her to home. Ultimately, she only stayed in the hospital one day longer than she would have otherwise. Having worked briefly in the NICU, let me tell you that she could have stayed MUCH longer for a variety of reasons, not all of which are very big ones (slightly high bilirubin, not eating as well as they would like, not gaining weight as quickly as they would like, not peeing the correct distance, not crying with the right pitch…:-)…well, okay, maybe not all of those reasons).

Home

Obviously, we did get to come home. Even though Ariana and Charis had been up to the hospital every day, yesterday was the first time they got to see her face to face (not through glass). They both absolutely love her! Ariana is so infatuated with "Baby Niyah", as she calls her. She continually wants to hold her and is always spontaneously kissing every body part she can see. I think she feels like she knows Adoniyah already since Ariana was also confident that it was a girl in mommy’s tummy and has been calling her "Niyah" for many months. Charis is also very intrigued. He kisses her all the time as well. He is not quite as gentle as his sister, so we are having to train them both about how physical to act around her "No, Niyah doesn’t want to read that large…..DOOOOH….book (as it hits her in the head)".

Our Little Lady

Adoniyah at this point reminds us very much of Ariana. She looks just like Ariana did at birth, but is a miniature version. Also like Ariana, she sleeps well (Praise God!!). Ariana slept most of the day and night, mostly just waking up to eat, which she did well also. Charis, on the other hand, took only two 45 minute naps a day from the day he came home and wasn’t all that into breast-feeding. Adoniyah is a natural and seems to enjoy it. We are hoping that she is a snuggler like her sister. It seems like she will be. If not, no worry, we’ll break her in that regard if she wants to be part of this family :-). It took Charis a little over a year, but he is a HUGE smush-pot now.

Our prayers for Adoniyah are like those for our other two. We pray, first and foremost, that she would know God as her Father all of her days. We pray that she would fall in love with Jesus Christ, the One who performed the greatest act of love in history just for her. We pray for a sweet, tender spirit towards the Lord and others. Unique to her, we have asked the Lord if he would give her a spirit of worship towards him. Whether in song or just in how she lives her life, we pray that worship is who she is more than what she does. We can’t wait to see what He has in store for her and us.

Hey all.

Hope all is well in your part of the world. Things in the DeLisi house are somewhat busier, but as fun as ever. Adoniyah is doing great, growing well and being a very peaceful baby. Charis is adorable although his "boyness" comes through in more ways than ever now. Ariana….well let’s just say that she is smarter than I am.

This Thursday morning, Ariana goes in for another spinal tap with chemo. We would, as always, appreciate your prayers for this.

Ways you can pray:

1. Continued remission and healing for Ariana

2. protection from the short term and long term effects of the chemo

3. uncomplicated procedure

4. Grace for our family to deal with the day-to-day and long term consequences of her illness

We love you all. May our Lord bless you.

Craig for the DeLisi’s

Entry 50 March 21, 2002 Treatment Day 303

We have a story too cute to wait until our next Christmas letter to tell you.  Brevity is not my strong point (john, I’m with you here), but it is worth the 5 minutes to read.

When Ariana and I got home, she called Tonya out of the house to see a “snake” on the driveway, which was actually a worm.  I, being the neurotic door-closer that I am, closed the sliding glass door behind us.  I had just days before installed one of those sliding glass door bars on the door because Ariana can open it on her own.  We found her and Charis playing unattended in the driveway last week (quite a scare).  Anyway, this bar has a tendency to fall down and lock into place when the door is closed.  Tonya found that out the day before when she got locked out of the house this way. 

Most of you may remember the Christmas letter where Tonya, the kids, and I were locked out of the house and used Ariana entering through the bathroom window to save the day.  This story, which will soon be made into a T.V. movie, was simply named Lockout 1- Don’t Call D.H.S. On Us. Well, we learned our lesson and hid a key outside. This came in handy for Tonya the day before when she got locked out.  Now if she had only remembered to put it back…..

Well, the key was on the inside of the house on the counter, doing us no good.  Tonya, Ariana, Charis, and I were on the outside of the house.  Adoniyah was peacefully asleep in her bed inside (oh boy…..Tonya wanted me to add here that if she were awake, Tonya WOULD have found a fast way in, namely, through the wall!).  We had no cell phone to call friends who had keys to our house.  We checked all the windows, especially our handy-dandy bathroom window…..all locked.  Finally, we realized that in the car in the garage were Tonya’s keys.  If we could just break into the garage, we could get her keys and go inside. 

All the windows to the garage were locked except one.  I managed to bend and remove the outer screen, only to notice for the first time that there are security type bars very firmly in place.  These bars were 11 to 12 inches apart horizontally.  I figured, “hey, I’m skinny, so let’s give it a shot.”  No go.  I got my head and upper torso in, but I was just slightly too big chested (first time for this) to get past my sternum.  “We’re screwed”, I thought.  We have no way of breaking in here.  But wait!  Our resident heroine from Lockout 1 was standing beside us, still a little groggy from the anesthesia from her spinal tap just a couple hours before.  Tonya asked if she wanted to be the heroine again.  She mumbled “yeah”, a little hesitantly.  I cringed at the thought of using Ariana for this after a rough day for her.  Then I thought, “ah heck, she can take one for the team”.

It was tricky getting her down, since the window was a good six feet off the ground (I stood on a plastic, wobbly garbage can).  Once inside, she wasn’t her brave self from the original saga.  Instead, I could not get her to calm down enough to listen to the simple instructions – “go to the van, open the door, and bring daddy the keys.”  I tried distracting her by telling her to go get me a piece of bubble gum from the front seat.  No good.  Bribing her with a lollipop didn’t work either.  Now I was concerned because, unlike the first episode where I could have entered the window if I absolutely had to, I simply could not get into the garage to help her if I had to (something I had not given much thought to previously).

Tonya asked Ariana something that sounded like the worst thought of the day to me, “do you want Charis in there with you?”  She suddenly calmed and said, “uh-huh”.  Good enough for me!  Next thing you know, Charis, the innocent bystander, was being lowered into the garage with his usual blank stare.  I have to admit that having ALL THREE of my children essentially locked in the house and garage in retrospect sounds bad, but at the time it seemed like the right thing to do.

Ariana was instantly calmed by his presence.  Now, I just had to convince them to stop running around the van, and actually try to get in to get the keys.  She did get it open, and after a little directing, was able to find the keys and hand them to me……shew!  I’m not sure what the locksmith would have said when he came to open the door…”your kids are WHERE?  You put them in there HOW?”

 So, the sequel to Lockout 1, Lockout 2 – The Back Door Strikes Back, has an old heroine and a new hero.  We just hope we get this all figured out before Adoniyah is big enough to get lowered down any windows.  Although, as small as she is now, she might just come in handy……

 The DeLisi’s

P.S.  Charis is sick with a fever.  Please pray that Ariana (and Adoniyah) don’t do the same.

Entry 51 May 13, 2002

This Mother’s Day was pretty uneventful.  The kids cooked breakfast for mom.  We went to a baseball game (in the rain).  Generally we just hung out at home.  We didn’t mind, however, since last year’s Mother’s Day was filled with enough “eventfulness” to last us a couple of lifetimes.  Although much has happened since that day, it certainly doesn’t seem like a year ago.

That Saturday (May 12, 2001) was an average weekend day on call for me.  The details of the day elude my memory.  I think I remember it being pretty busy.  I may or may not have gotten an hour or two of sleep that night.  The next morning (Sunday) I had to see the patients I admitted, as well as the patients I was taking care of on our inpatient service.  I was hurrying so I could get home early enough to surprise Tonya by taking her and the kids on a picnic for Mother’s Day.  I remember being paged while I was writing a note on a patient. It was another resident, Jack, who said he had just received a phone call from the lab with a “panic” value on a patient – Ariana.  She had blood drawn two days prior because she had an unusual enlarged lymph node that had been on her neck for a few weeks, seemingly unrelated to any infection.  The lab called to tell us that her platelets were dangerously low (13,000 – normal is 150,000), in fact at a level that one can even see spontaneous hemorrhaging.  Her hemoglobin (red blood cells) was low also (7.4).  I hung up phone and put my hands on my head.  Lots of things could cause one of the two of these blood counts to be low, but not both.  That, with the combined symptoms, made me realize we were dealing with some sort of blood related cancer.  I still remember the feeling that I had.  I didn’t seem real.  Maybe I was still asleep on call and dreaming.

I got paged to a delivery, which I mechanically walked through until my buddy John showed up and eagerly relieved me.  I found my attending, Dr. Rayborn, and told her I needed to go home and why.  I didn’t get through my sentence.  Those were the first tears I shed for Ariana since the day she was born.

I remember very vividly going home and crawling into bed with Tonya and Ariana, who were just waking up.  Instead of taking her on a surprise picnic, I calmly told her we had to go to the hospital.  So with a few calls to Ariana’s doctor (Paul Herman) and a few desperate calls to friends and family for prayer, we left.  No picnic, no Mother’s Day cards.

With her blood counts so low, she obviously needed blood and platelet transfusions.  This required an IV.  We took her back to the treatment room on the peds floor, the room where I had many times started IV’s on my pediatric patients.  I held her in my lap while they tried time after time to get access.  She was, as any 22 month old would be, screaming and looking at me as if to ask, “Why are you letting them do this to me daddy?”  It broke my heart.  I have a very vivid remembrance of the thought that came to me at just that moment -- “this is only the beginning.”  And it was.

The next two days can best be described by the word nightmare.  As we were transferred to another hospital and the diagnosis of leukemia was confirmed by bone marrow aspirate, things seemed to be spiraling downward.  Within 48 hours of the infamous phone call, Ariana had a Port-A-Cath placed (via surgery) and was receiving chemotherapy.  I remember one conversation with Ariana’s oncologist where she explained exactly what to expect from the two and a half years of therapy, with each drug and its side effects discussed.  I remember Tonya asking through tears if we should even put her through this.  The alternative of doing nothing didn’t seem too unreasonable just then.  “How long would she have without treatment?” Tonya asked.  The response was that they didn’t know, maybe a few months, maybe a couple of weeks.  She would likely die of overwhelming infection that her body couldn’t fight.

We, of course, went ahead with treatment, but were daily haunted with the reality of losing Ariana.  She was so precious to us.  She was getting so “big”.  I know that my love for her had personally deepened in amazing ways in the preceding few months as she responded to me more and more like a child and not an infant.  I remember thinking that I didn’t want Charis to grow up without having known his big sister.  “Why couldn’t I just trade places with her?”  “Do not let her suffer.”  “Please God, please.”  I really thought that more times than I can count.

We stayed in the hospital for 10 days.  We were home for a few days and then would return for a procedure or more chemo.  It seems as if we were there virtually the whole first month.  We had a bad scare when the doctors thought that she wasn’t responding to the chemotherapy and wanted to ditch the protocol and start her on some much more potent chemo drugs.  It turned out to be a mistake, however, or, more likely, God’s intervening hand. 

For the first month of treatment, we had family and friends fasting for her on every single day.  It was awesome receiving emails from strangers from all over the country that were praying for her or wanted to fast for her.  We have never experienced anything quite like that.  We celebrated with tremendous joy the news of her remission on June 15^th. 

After that she entered into a 6 month phase of treatment that involved 3 day stays in the hospital every 3 weeks.  The biggest challenge, quite honestly, was the schedule flexibility required during this time.  She did very well during each admission.  In fact, in a peculiar way, I enjoyed the time with her since often I stayed with her at night by herself so that Tonya could stay home with Charis.

Finishing that phase brought us into the final phase of treatment, one that lasts for 2 years.  It involves nightly oral chemo medications, weekly clinic visits with bloodwork, and every third month chemo in her IV and her spinal fluid.  To us, this part seems SO easy, relatively speaking. 

To Ariana, all of this has just become a part of her.  She thinks her “port” is cool, and even helps Ms. Diane access it to retrieve her “red blood” each week.  She, as we do, LOVES the clinic.  They have become a part of us in so many ways.  She even gave one of the doctors his new nickname, “Popi K”. Ariana has never put up a fight about wearing her mask (even when she was 22 months old!).  In fact, she often reminds Tonya or I that we forgot it.  These days she is wearing it less and less, essentially only when she is going to be in “spit swapping situations” with other kids (who may or may not know they are sick) – hanging out with friends, running around at church, etc.  She still doesn’t go into child care (and neither do the other two kids) or nursery type settings.  She is remarkably intelligent, very personable, and so much fun to be around.  She is learning how to be a good big sister to Charis (she is already great with Adoniyah).  She knows more Bible verses than Tonya or I (not a huge feat, mind you J).  She loves Elmo, “kids singing” (all of her Bible song tapes), Blue’s Clues, and slam-dunking the basketball outside when daddy holds her up high.  She is already telling us what color cake she wants for her 3^rd (pink) ,4^th(purple), AND 5^th (yellow) birthday.  Purple and pink are her “favorite color”.  Sundays are her favorite day because that is the only day she is allowed to have sweets.  Every day when she wakes up, she asks, “Is it Sunday?”  She tells us that our next baby will be a boy and his name will be “Moses”.  She loves going shopping – she thinks EVERYTHING is so “cool”.  She loves buying people presents.  Going to the park is a favorite pastime for her.  She wants us to adopt every child that she hears needs a family (“Why can’t they come live with us?”).  Overall, she is becoming a very “big girl” so quickly.

Our lives have been marked permanently by all that has happened.  Major events in an individual’s life often become a point of reference for time.  The most obvious is how we define time: before Christ (B.C.) or after (A.D.).  When we got married, I remember referring to life “before marriage” or “after marriage”.  Once children started coming, it was always “before children” or “after children”.  Now, it seems our reference has become “before Ariana was diagnosed” or “after Ariana was diagnosed”.  That is truly how we view things.  Life is that different.

Tonya and I are, in a strange way, thankful for all that has happened.  We wouldn’t have chosen it, but I am not sure we would have it undone.  Our view of God as our loving Father has been molded more clearly as we have felt His embrace.  Our outlook on life is radically different.  We are not as “obsessed” with the yuppie-parent things that we used to be (no offense to you yuppies out there J).  Our focus is on the bigger picture, on our children’s hearts and souls.  Life is what happens in the silly, little things so much more than in the grand events. We are trying to ENJOY the daily journey of the kids’ childhood, not just get through it.  I’d be lying if I said we don’t think about losing Ariana (or her relapsing) almost daily.  The Lord has been dealing with these fear issues in us both.  And while our life may never be “back to normal”, we feel like it is, simply and thankfully, just that….our life.

Tonya did end up receiving those Mother’s Day cards from last year (I saved them).  Other than that, this Mother’s Day, like life lately, was just kinda routine.  We’ve had quite enough excitement this past year (did we mention the newest baby and life with 3 kids under 3 years old?).  “Routine” sounds like it is just what the doctor ordered.

Love to all,

The DeLisi crew

Entry 52 June 11, 2002 Treatment Day 393

Hey all.

We hope all is well on your respective fronts.  Life here is good, but actually pretty darn stressful right now.  Nothing huge is going on, just a LOT of little stuff.  Most of it is residency related, some is "real life" stuff, but none is really worth getting into.  Suffice to say, we would appreciate prayer for physical, emotional, and spiritual well-being.  Actually, probably better, please just pray that we have great Trust.

We are writing to let you know that our little lady has another procedure this Thursday morning.  Ariana will have another spinal tap under sedation followed in a week by some slightly more intensive chemo.  She is doing amazingly well.  She probably wins the award for "Most Energy" in our house despite being chronically anemic from the chemo.  She is something.

Ways to pray:
1. Her continued healing
2. Uncomplicated spinal tap and anesthesia
3. That the medicine will continue to do her good and not harm
4. Our continued emotional strength for her illness
5. Our "Trust" in the Father

We love you,

Craig, Tonya, Ariana