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To help navigate through the entries made to this site, we have created links to each of the entry days.
Entry #1 May 17, 2001
Entry #2 May 23, 2001
Entry #3 May 24, 2001 - Treatment Day 8
Entry #4 May 25, 2001 - Treatment Day 9
Entry #5 May 26, 2001 - Treatment Day 10
Entry #6 May 28, 2001 Treatment Day 12
Entry #7 May 29, 2001 Treatment Day 13
Entry #8 May 30, 2001 Treatment Day 15

Click Here for Page2 of the Email Archives (Entries 9-18)

Family and Friends,

How I wish this email was about a recent article on the above topic. I realize that while many of you now know, there are others who are unaware that our precious Ariana has just been diagnosed with leukemia (ALL). This email is for both basic information and, more importantly, for prayer.

Five days ago (Mothers day), Tonya and I received word that some blood work Ari had done on the previous Friday had come back with very bad values. We had the blood drawn because she had an enlarged lymph node that had not changed in a few weeks, with no apparent signs of infection. We immediately went to the hospital where I work to have further testing done. After a pathologist read her blood smear on Monday morning, we were fairly certain of her diagnosis. We were transferred to a local Childrens hospital for further workup and treatment by pediatric oncology specialists. A bone marrow biopsy did demonstrate ALL. Ariana had surgery yesterday for placement of a Port-A-Cath (permanent intravenous access for blood draws and chemo). She had a spinal tap during surgery that demonstrated no tumor cells there (praise God!). last night she received her first dose of chemotherapy and did well. Today, she received a second drug. We will likely be in the hospital till Mon or Tues of next week.

ALL is one of two general types of leukemia that children can acquire (AML is the other). Of the two, it has a far better prognosis. Within ALL, there are two subsets, B cell and T cell. B cell, which is the better is the type that she has. Only 2000 kids in the US are diagnosed with leukemia each year, so it is a relatively rare disease. The five year survival for ALL is 75-80%. Her gender is in her favor, as is her age. Her tumor load seems relatively low, although her liver and spleen are enlarged. She has very little to no ability to make platelets, red blood cells, or white blood cells. This puts her at high risk for bleeding and infection. Although the above numbers are encouraging (survival rate), it is hard to find solace in percentages when your child has something that, statistically, less that 0.01% of children acquire.

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 Gods 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 Gods 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.

Let me give you all the specific prayer needs to lift up to the Great Physician, the Lord Jesus Christ.

Arianas healing

that she would not suffer (physically and emotionally)

protection from infection while immunosuppressed (especially this first month)

protection from overload of her kidneys due to destruction of the tumor cells

repeat bone marrow biopsies on 5/24 and 6/13

this will show us her response; if she is not in full remission by the one on the 13th, it is generally very bad

wisdom for how to alter our life

the Fathers continued peace and presence in the present moment


We have lots of support right now with family and friends here, and our tangible needs are being met by so many people. If you are wondering what you can do, our primary desire is that you storm Heaven for us with you prayers. I need to return to the hospital to be with Tonya and Ari. We love you and will update you when we are discharged from the hospital.
Love,
Craig, Tonya, Ariana, and Charis

Family and friends,

We are home indeed!  It feels great to be out of prison…err…the hospital.  Our little munchkin has lost a few pounds (of her 25 lb frame), doesn't quite have that sparkle in her sunken eyes, has a few new boo-boo's (scars), has learned many new words ("I.V.", "port","red blood"), still has all her hair, has indulged in sweets for the first time, has a new love with breakfast….coffee!, but for the most part is still our little lady and no worse for the wear (praise God).  She has learned that it is okay to cry.    She knows when it is going to hurt.  She has also learned that not everything is "OK" (Tonya has grown to despise that expression) - some things are kind of lousy, no matter how ya twist it.  She has been a real trooper. 
 
We so appreciate all the emails, letters, phone calls, etc.  We especially appreciate those of you who have shared specific Scripture with us that the Lord has given you.  This, in particular, has repeatedly ministered to us in very specific, timely ways. 
Our stay at the hospital was very eventful.  She underwent surgery last Wednesday to have a permanent port placed (for chemo and blood draws). She had a lumbar puncture at that time that demonstrated NO tumor cells inher spinal fluid (one prayer answered).  A few days later, she had some very strange and scary neurological changes that none of us knew the origin of.  Her eyes were crossing.   She couldn't sit up on her own.  She knew what was going on and had appropriate responses to questions, but her words were slurred. She was drooling and had poor fine motor coordination.  All of her lab work was normal and she had not been given any medicine that could have these kind of side effects (narcotic, etc).  We ended up getting a CT scan of her head that was normal (praise God).  We had lots of folks praying.  She went to sleep and woke up the next morning without any of these findings.  We don't know what they were from, but we were very excited to see them all gone.  A few days later she spiked some decent fevers overnight (102-103).  Even though the source was likely viral or even the tumor itself, they were treated aggressively with IV antibiotics.  The next day we heard that her blood cultures grew out bacteria.  I was scared because I knew these infections can be serious and can also be related to the port that was placed (which would possibly involve surgical removal and replacement).  We asked tons of people to pray, and the next day they told us that the bacteria was likely a contaminant, which was confirmed by the negative repeat cultures :-).  He hears our prayers.

It has been ten days now since our lives have been changed.  Little things seem to matter a lot more now.  I doubt I will ever again drag my feet about going to the park to play on the "side" (slide) and "hwing" (swing).   We really are doing well.  We still hurt and cry frequently.  We still can't bear to see her suffer.  But, we have felt His peace through so much of this.  Our desires to be godly parents and shepherd her heart haven't changed (Tonya is still marvelously effective with her).  Our desire to be open to God's blessing of more kids hasn't changed.  Our desire to live in and minister to those in the inner city hasn't changed.  Our heart for adoption hasn't changed.  We don't know how this will alter our course or slow the attainment of these desires, but we don't believe that our lives' focus and mission should be changed.  With that said, we realize our life will often be consumed with Ariana and her treatment, and I don't mean to belittle it.  I just mean that we aren't abandoning ship because of this storm, albeit a big one.  We are still confident of at least 4 things:
1. God is still good
2. God is still in control of every step of this (and has the ability to heal whenever He desires)
3. Ariana still belongs to Him, not us
4. Because of Jesus, death has lost it's victory (meaning = for those who believe in Him, dying is better than living)

Many of you have asked how to help.  Many of you have offered to come to Tulsa and help out.  We may take some of you up on this in the future (we still have 2.5 years of treatment left).  However, for now, we do have a specific need.  We want people FASTING and PRAYING during this first month.  I don't want there to be a single day of the induction phase of therapy (most important) that isn't covered with this.  I will fast for much of this, but we desire and covet you to do the same with us.  Maybe
pick a day or two to refrain from food and dedicate to more intense prayer for her.  I really feel like this needs to be done the first month.  If you decide to, please email me what day(s) you will do this (and yes, I know the admonition about not making fasting a public thing, I just want to make sure that if there are any days not covered I can at least fast then).
 
Some things you can pray:
1. Ariana's healing
2. Her moment by moment comfort by Him
3. Bone marrow biopsies on 5/24 (this thurs) and at the end of the month (6/13) - this last one is particularly important, full remission is expected by this point; if it isn't, medically speaking things look grim
4. Protection from fever and infection (again, every fever right now puts us in the hospital)
5. Wisdom on how to live day to day for Tonya and I
6. That Charis wouldn't be lost in the shuffle
7. God's Presence would be known to us each moment
 
We love you all and appreciate each of you.
 
The DeLisi's
 
Ps. Please feel free to forward these updates to whoever you like (for prayer, etc.)

PPS.  Here is a link to a general website on leukemia if you would like to learn more about the disease:
http://www.leukemia.org/

May 25, 2001 - Treatment Day 9

Every day ordained for me was written in Your book before one of them came to be. Psalm 139:16

This verse if from a psalm that we read to Ariana almost daily while she was still in Tonyas womb. It has also always been written along the ceiling of her room. It is one of many parts of Gods word that has brought strength and encouragement to us in this. None of this is a surprise to Him. He knew each of her days before she was even born.

Thank you for the fantastic response of fasting and prayer. I know that for many of you, fasting is either something you have done rarely or never at all. some have even asked how to do it. I know different churches give their own suggestions about the how. Best I can tell, these are all fine suggestions, but not particularly grounded in Scripture. Fasting seems to be as much (or more) an attitude of the heart as it is the stomach. For any interested in reading, I recommend Isaiah 58:1-9 and Matthew 6:16-18. I often read these before (or during) times that I fast.

The pathologist looked at the bone marrow aspirate today. He thought that there were few cells found, but not sure if the cells seen were leukemia cells or immature normal cells. He is still leaning towards doing a bone marrow biopsy next Thursday (poor gal, her bones are gonna look like swiss cheese). Again this info does not change treatment, but it does give a very good idea of long term outcomes (survival). They are not 100% sure they will do this. It appears they will, however.

2 quick prayer requests:
first is that ari has been flirting with a fever again (100.7 today I know this seems like a fever to most of you, but their definition is different). If she does develop one, it is back to the hospital for at least 2 days. We are not emotionally up to this. Second is that Ariana would bond better with me. This has been a long, hard year (first year of residency), and I have been gone a lot. Despite that, we have remained close. For some reason, she really doesnt want me to be around her or touch her most of the time. I have tried to not be the one doing the bad stuff to her as much (medicine, taking temperature, etc), but it doesnt seem to be helping. I stopped wearing scrubs for this reason. The best time I get with her is when I steal extended hugging time during a nap or at night. Anyway&.not a life shattering request on the grand scale of things, but certainly something that is bumming me out&.

In Him,

Craig for the DeLisi

Ariana woke up with a fever of 102F so we are off to the hospital for a nice weekend&&:)

Please pray for her health and our emotional stamina

Craig

Hi again.

We are back home with negative blood cultures, mega-doses of IV antibiotics, a platelet tranfusion, very low white blood cell counts, a great appetite, and a joyful spirit.

Thank you for the prayers from the 4 of us.

The DeLisis

His (Jobs) wife said to him, Are you still holding on to your integrity? Curse God and die! He replied, You are talking like a foolish woman. Shall we accept good from God, and not trouble? In all this, Job did not sin in what he said. Job 2:10

This interaction occurred just after Job had lost his ten children, all of his wealth, and had developed painful skin boils all over his body. I have always been awed by the faith demonstrated here. I imagine all of us would certainly curse God and die under these circumstances. I appreciate the sovereignty attributed to God in this situation. While Satan was the destroyer and afflicter in this, the One over it all was His Father who loved him, and Job knew that despite his incredible suffering. He knew what the apostle Paul knew and wrote to the Christians in Rome centuries later: And we know that in all things God works for the good of those who love Him, who have been called according to His purpose. Romans 8:28. This is yet another powerful Truth from Gods Word that we are holding on to. Enough for my daily sermon&.

Ariana goes in for a repeat bone marrow biopsy this Thursday. The last sample was inadequate and, unfortunately, demonstrated leukemia cells (which would not be expected to be seen at this point). It will be another big day for her at clinic. She will receive two different chemo drugs, likely receive a blood transfusion, and this more invasive (and consequently more painful) test.

The ways you can help to pray:
Arianas healing
a good report on the bone marrow (NO leukemia cells and a return of some normal bone marrow function)
that she would tolerate the procedure and sedation well with little or no pain afterwards
no reaction to the blood products she will receive
continued protection from infection while her counts are so low

that is all for today. Thank you all again for your love and support. The response to our call for prayer and fasting has been overwhelming&.

Craig for the DeLisis

Ps. FYI: My residency program has graciously allowed me to do a pediatric hematology-oncology self study rotation for the month of June (which I would have been doing already) which will allow me to be at home most of the time during this month when things are still so tenuous (and not cause me to lose time towards residency or sick/vacation time). In case anyone was wondering why God lead us to this program in Tulsa, I believe reasons like this are one of many.

Hey all.

Today was a good day for the little patient. We were encouraged by her blood work that demonstrated a hemoglobin (red blood cell) and platelet (clotting agent) count that were higher than expected. Because of this, she did not need a blood transfusion or platelets. She did receive the bone marrow biopsy which went well, followed by two doses of chemotherapy. After the procedure, she had a fairly high heart rate (200s) for unknown reasons. It went back to normal while she slept, but then jumped back up to 160-170 range when she woke up and sat quietly on the bed. I have been checking it throughout the night, and it seems to be back to its baseline. No one is sure what caused this. They think it may have been a response to the anesthesia that was used (have I ever mentioned that I greatly dislike procedures under sedation). She has had some nausea this evening and threw up once. We gave her some Zofran (anti-nausea) drug which may or may not have helped. She does not appear to be in any pain.

We do not yet know the results of the biopsy. It will be tomorrow afternoon that we will have the final results. One encouraging thing to note is that the blood drawn did not have any circulating blasts (leukemia cells). That doesnt mean that there cant be any in the bone marrow, but if they were in the blood they would certainly be in the marrow. Up until a few days ago she did have blasts in the blood. I will email the results tomorrow (tonya and my 5th wedding anniversary). Until we get the results, keep praying&.

Just an update on Arianas personality and mental sharpness&. She is very easy to converse with. She expresses just about anything she needs to in words. She wakes up each morning begging for milk and eat. Today, that was a huge challenge since she couldnt eat or drink because of the procedure at 11:00. That is a little hard to explain to a 22 month old. Tonight, I removed the bandaid from her back (from the procedure) while she was bathing since it got wet and was nasty. We went back into the bathroom with Tonya after we had dressed her. When she saw the bandaid sitting on the counter, they had a cute exchange.

Ari: bandaid
Tonya: What is that on it?
Ari: red blood
Tonya: Who took it off you? (tonya would leave it on for weeks)
Ari: daddy
Tonya: Did it hurt? (the reason she would leave it on for weeks)
Ari: yeah

Oh well, in trouble again. I need to go put Tonyas anniversary present together (she is gonna love it). Thank you again for all of the prayers being offered up to our loving Father.

Craig for the DeLisis