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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

Entry 9 June 1, 2001 Treatment Day 16
Entry 10 June 2, 2001 Treatment Day 17
Entry 11 June 4, 2001 Treatment Day 19
Entry 12 June 8, 2001 Treatment Day 23
Entry 13 June 13, 2001 Treatment Day 28
Entry 14 June 14, 2001 Treatment Day 29
Entry 15 June 15, 2001 Treatment Day 30
Entry 16 June 19, 2001 Treatment Day 34
Entry 17 June 20, 2001 Treatment Day 35
Entry 18 June 22, 2001 Gestational Day 46 - A Special Blessing!

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Friday June 1, 2001 Treatment Day 16

We received a call from the doctor on the way to dinner (to celebrate our anniversary). The bone marrow biopsy done yesterday showed that there are still definitive leukemia cells in Arianas marrow. The doctor wants to meet with us tomorrow morning (Saturday) to discuss adding a 4th drug to the regimen. As far as I know, it is a fairly toxic one. They are removing her from the study she was in. I believe she just been bumped from low (or normal) risk to high risk (for poor response and relapse).

More tomorrow&

Craig

Saturday June 2, 2001 Treatment Day 17

This email will be long and will have a very technical flavor since many things are now changed. For those who have a hard time following or are not interested in the details, just skip to the end (after the asterisks). I will say that, second to my initial email, none is more important or informative than this one (ie. please dont dismiss it because of its length).

The scenario. Due to many factors (age, white blood cell count, no leukemia cells in the bone marrow), Ariana was initially placed in the standard (best) risk category for her treatment. It means that she would only get 3 chemo drugs, not 4. They did a bone marrow biopsy at day 8 of treatment. This is used to predict the response to therapy. People who do not show leukemia cells at this point generally do better than those who do (assuming remission in both groups at day 28). By better, that implies frequency of relapses more than anything else. On Arianas day 8 sample, not many cells were seen. They could not tell of some of the cells seen were leukemia cells or not. They decided to check again at day 15 (something not usually done). Although her blood was clear of blasts (leukemia cells peripherally), her marrow still showed 65%+ leukemia cells (her initial day 0 sample was >95%).

The confusion. Because of the day 8 sample being inadequate, it is impossible to say whether she has been gradually improving, albeit slowly, or was improving and is now doing worse. Leukemia is caused by a mutation (for unknown reasons) in a white blood cell. That one cell proliferates until it chokes out the other normal cells, causing the symptoms. With Arianas clinical picture of improvement (lymph nodes much smaller, liver and spleen normal size, making normal cells), they are afraid that she may have developed a sub-clone (mutation of the already mutated cell line) that could be resistant to the current therapy. It is certainly possible that at day 8 the sample really had say 80% leukemia cells, which would mean she is slowly responding, but we cannot know for sure.

The question. Our doctor, Martina Hum, was very concerned by what she saw in the bone marrow. So concerned, that she called the director of both of the two current leukemia studies Ariana is enrolled in (these are large, 250 center trials for new drug treatment). One of the directors was a woman who trained her in Dallas. This doctor told Dr. Hum off the record that if this were a patient that she was taking care of she would remove her from the study (kind of a big deal) to add the 4th drug. This was the desire of Dr. Hums heart as well. We greatly appreciate the fact that they are placing Ariana ahead of the study protocol. Having been exposed to academic medicine in Birmingham, I assure you that it is often the case that the greater good of the study is place ahead of an individual patient. So what this means to Ariana is a few minor alterations in her therapy down the road (including more of the chemo in her spinal fluid), but the addition of a new drug now.

The new drug: Daunomycin. This drug was initially developed as an antibiotic, but was deemed too toxic for use. In the best case scenario she will only receive 2 doses of this drug (if remission by day 28). If she doesnt respond, it could be more. At higher, longer doses, the most significant concern about this drug is the damage to the heart itself. This is not commonly seen in kids at the lower, shorter doses given. Other common side effects are mouth sores, nausea (which she hasnt had much of), and obliteration of her normal cell counts (which means longer susceptibility to infection and likely more transfusions). This drug is routinely given for all ALL patients at St. Judes, which is the largest childrens cancer hospital in the country dealing with Arianas disease. We have peace that this is the right next step. We will begin Monday with a hospitalization for a day or two to see how she responds, to get a preliminary study of her heart (ECHO), and to monitor kidney function.

On more factor. One thing I have never mentioned in all of this is the significance of the genetic studies on the leukemia cells. As I said before, these cells form as the result of a mutation. They analyze the actual leukemia cells to see what kind of mutation occurred. Some mutations (ironically) have a favorable outcome. Having more that the necessary chromosome number is actually favorable. We already know that Ariana has some extra chromosome numbers. A favorable value is >1.16 times 46 (which is the normal number). Arianas is 1.17. Again, on paper every thing is favorable for her. Certain translocations (flip-flop of gene material from one chromosome to another) or extra chromosomes are good (ex. Extra 4, 10, 17 or X or 12,21 translocation). Others are bad (9,21 translocation
the so called Philadelphia chromosome) which would lead us right to a bone marrow transplant. We will know all of this info at the end of the 28 days.

Receiving the phone call last night on our way to celebrate our anniversary was quite a blow. After Tonya and I shed tears over our expensive (but delicious) dinner, we discussed the fact that even in the worst case scenario Ariana still wins. She gets to go be with the Lover of her soul, Jesus. This is obviously not something we want to think about, but there is so much peace that comes from knowing that. It is just so hard walking through it daily. We cannot bear to see her suffer. We told the doctor today that we did not place the burden of Arianas healing on her or the other docs. Our trust is in the Lord. We know He can heal her through a miracle from His hand, from the medications, or by taking her home to be with Him (ultimate healing).

In case you are wondering, we havent lost hope. It is just that our hope and confidence is in the One Who created her, not in any particular outcome. We still desire her healing and comfort more than we value our own lives, and we make that very clear to Him daily in our words and in our tears. We just must rest in the fact that He will work all of this to His glory and for her (and our) good. We have never known pain like this, but it is comforting to have a Savior who has&.

Ways to pray:
Arianas healing to glorify His Name
toleration and good response to the new drug
that she wouldnt experience the side effects from the new drug (mouth sores, nausea, heart damage, effects from low counts)
that her painful diaper rash (probably from lactose intolerance secondary to a current drug) would resolve
our continued faith in the goodness and love of God and our strength at each moment
His peace
final bone marrow biopsy to show remission (I think on june 14th, but I will email as soon as I know if they change the day)

We love you all and thank you for walking with us through this

In His (unbreakable) Grip,

Craig, Tonya, Ariana, and Charis

“Praise be to the God and Father of our Lord Jesus Christ, who has blessed
us in the heavenly realms with every spiritual blessing in Christ.” Ephesians 1:3

Hold onto your seats…

This morning, we took Ariana to the hospital with bags packed and ready for admission to begin the new (nasty) addition to her chemo regimen.
When we got there, the doctors (2 of them) came in and told us they were confused. They had a pathologist review the biopsy results this morning (one who was more of an expert in hematology but off for the weekend). He said that he wasn’t convinced that what he saw was leukemia cells from last week’s biopsy. He thought they might have been immature cells called hematogones which are nearly impossible to distinguish with the naked eye from leukemia cells. The heme-onc docs and pathologists are not used to seeing these cells since biopsies are never done at the day in treatment that her’s was. The flow cytometry results came back this morning as well. This machine analyzes cells by the markers that they have on them. At Ariana’s diagnosis, there was no doubt that the markers showed B-cell leukemia. The ones from thurs, however, did not show the same markers as the previous leukemia cells. They were, in fact, consistent with these immature cells (hematogones). Dr. Hum once again spoke with the directors of both national studies who said that they would NOT remove her from the studies in light of this and WOULD NOT begin therapy with the 4th drug. From their (and our docs) opinion, she is moving toward remission appropriately! Her normal white blood cell count was slightly higher today and her hemoglobin (red blood cells) and platelets were high enough not to need transfusion (platelets were normal, in fact). She received one dose of chemo, and we came home!

One of the nurses at the clinic told us that she knew what we had been doing over the weekend….praying. She said that she didn’t care what the docs said, she thought it was a miracle…

Regardless of whether or not it was a miracle or an “error”, I think this was a valley that Tonya and I needed to walk through. It is so easy to put our confidence in the medicine, especially when all of Ariana’s risk factors are so favorable. I think we needed to (once again) give Ariana back to the Lord and entrust her to His care. I think we needed to see (and prove) that our trust is NOT in medicine, but in the sovereign Hand of the Lord Almighty who loves her (regardless of circumstance).

Thank you all for your continued prayers. I think we’ll go outside and PLAY!

Craig for the DeLisi’s

Hey all.

We went back to the clinic today for a dose of chemo and some blood work. Things looked GREAT. Her platelets were very high (289,000), her hemoglobin was stable (7.5), and her absolute neutrophil count (white blood cells that fight bacteria) was 1800! This is the first time since this all began that she hasnt been neutropenic (ANC<500). We are very glad.

In larger news, Arianas appetite has become quite a phenomenon around our house. She absolutely cannot eat enough because of the steroids she is on. She will eat an entire (large) meal and then go and play. Twenty to thirty minutes later, she will be begging for food. We will make her another meal, which she will eat in its entirety. At our doctor appointment on Monday she weighed 25 pounds. Today (four days later), she weighed 28.7! This would be the equivalent of most adults gaining 25 pounds in 4 days. She is resembling a pregnant woman very much these days. Her face is round like a pumpkin (very cute) and her belly is ENORMOUS. She looks eight to nine months pregnant. We had to buy her pants that fit 4 year olds for her new girth. Also (like a pregnant women) she is very emotionally labile, she waddles when she walks, and is craving all kinds of strange foods. It is all quite cute.

Ariana has been very much protected from the side effects of the drugs up to this point (other than the above insatiable hunger and emotional instability). She still has most all of her hair. Nausea hasn't been a problem. We are very thankful.

We have the final date of Arianas confirmed bone marrow biopsy. It will be JUNE 14th. We are asking anyone and everyone to FAST and PRAY on this date for TOTAL REMISSION. We will likely not have the results until Friday, but we will email them as soon as we get them.

Ways to pray:
Arianas healing (to glorify His name)
REMISSION on June 14th (thurs)
no complications from the bone marrow biopsy
wisdom for whether to stay in the treatment study or not (decision must be made by day of bone marrow biopsy)
good cytogenetic results (chromosome studies) of her leukemia cells

We love you and appreciate your love and prayer.

Tomorrow is the big day for our little patient. I just wanted to remind everyone so you can please pray for her. For those of you who feel led, we are also asking you to fast and pray. She will go in at about 8:00, have some blood work, and then have the bone marrow biopsy around 10:00 AM (this is all central time). Last time she had a strange response to the anesthesia, so please pray for no complications. Also, please pray that she tolerates not eating or drinking after midnight tonight since the last few times she was BEGGING us for food and milk from the time she woke up till the procedure (four hours or so).

We will get the biopsy report either late tomorrow afternoon or on Friday. Either way, we will shoot out an email shortly after.

Ways to pray:
1. Ariana’a healing
2. REMISSION
3. that she will tolerate procedure (and anesthesia) well
4. wisdom for whether to stay in the study or not (treatment study)
5. favorable genetic results of her leukemia cell studies
6. His Peace moment by moment (and that we lean on and trust in Him)

Much love to you all. We will be writing soon…..

Craig

Hey all.

This is not “the” email you have probably been waiting for. We will not have the final bone marrow results until sometime tomorrow. I just wanted to give a quick update to tell you how things went today.

Ariana did GREAT with the procedure and anesthesia today. They had to do 2 biopsies (#4 and 5) to obtain an adequate sample. Right now she is running around eating “fry-fries” (french fries). That’s one prayer answered. Thank you for praying.

Craig

YYYYYYYEEEEEEEESSSSSSSS!!!!!!!!!

We were just given the official report by Ariana’s doctors this afternoon. The bone marrow aspirate and biopsy were NEGATIVE for leukemia cells. Praise You Father!!!

We are (obviously) very excited and rejoice in the good works of our God. He has heard our (your) prayers and answered “YES!”. We cannot thank you enough for bringing our little princess before His throne.

Two more of our prayer requests were answered yesterday as well, one by commission and one by omission. The first is that we got the results of the cytogenetics (chromosome studies of her leukemia cells). She has a VERY FAVORABLE mutation. For those of you who are medically minded, her leukemia cells have a triploidy of chromosomes 4 and 10. The prognosis of this (for cure) is even more favorable than for “normal” ALL. And because of this favorable mutation, the second part of our prayer was answered. The study that we were praying about being on isn’t even an option because her long term prognosis is so good because of this mutation. They are going to enroll her in a different study that doesn’t include the possibility of the more toxic drugs.

This last month has been the longest and hardest we have ever gone through. We have wept, prayed, and rejoiced more than any other time in our lives. Through it all, we have felt a huge measure of His Presence and Peace. We want to thank YOU for sustaining us through your prayers. I truly doubt we would have made it through so strongly without you. The road ahead is still a long one filled with many unknowns. We don’t claim to know the steps He will take us through, but we know HE WILL BE WITH US.

That’s it for now. I will write more later. We need to go CELEBRATE!!!!!

Howdy (we’re close to Texas, you know)

We appreciate the many of you who have responded with great joy to the exciting news of Ariana’s remission. We wanted to give the good news a few days to sink in before we described what the remainder of her treatment should look like. Although some of the hardest steps are behind us, we are still (unfortunately) in the VERY BEGINNING of her treatment course.

The next 6 months involve daily oral chemotherapy with 6-MP and every third week treatment (in the hospital) with methotrexate at fairly high doses. There will be a few other drugs thrown in for a dose or two, but nothing too toxic. In the best-case scenario, Ariana will be hospitalized for three days every three weeks for the next 6 months. She will have 6 spinal taps (with medicine given in the spinal fluid) and one more bone marrow biopsy at the end. Following that, she will have 2 more years of chemo at lower, less aggressive doses. If she gets a fever, she will still likely be hospitalized for three days each time (Tonya said no sick kids coming over to play please :-)). She has to take antibiotics 3 days each week for the next two and a half years to prevent a certain type of pneumonia (PCP). She will still be wearing a mask when indoors around people other than immediate (live-in) family. Life is NOT back to normal, or even close really.

This is not written to minimize how tremendous the events of this past week have been. We are thrilled that the Lord has chosen to eradicate the leukemia from her body. We saw His hand at work in so many points throughout the month. We really experienced the power of corporate prayer through this time. One thing I never shared is that the only unexpected admission (for a fever) this past month came on the only day that no one was fasting. This was an accident – I thought that the person bringing us a meal was actually fasting (since they were written on the same calendar). We also feel like she has been protected from the side effects of the medicines in a major way. Probably the biggest example of answered prayer came when we were told that she was not responding to treatment only to find out days later that the results were “interpreted incorrectly”. That really was the turning point from our perspective. We went from feeling like we were losing her to feeling like (through Him) she would beat this thing.

Because of the lessons we have learned about God’s faithfulness to answer prayer, you can bet we will have you all informed so that you can man (and woman :-)) your posts during the crucial moments ahead. As stated above, she will have 6 more procedures under sedation (which I hate) during this phase. Methotrexate is the most toxic of the medicines she will likely have to take. It commonly gives mouth sores, causes hair loss, and (when given in the spinal fluid) can cause permanent cognitive dysfunction (mental slowing). As you can see, we still have MUCH to trust Him for, but for now (and in the future) we will continue to REJOICE!

Love,

The DeLisi crew

I forgot to include in the last email the ways that we would appreciate you to pray for us in the near future. Here it goes…

1. that Ariana would stay in remission indefinitely
2. that she would tolerate the new medications well without side effects (especially Methotrexate) 3. protection from infection 4. safety during her procedures every 3 weeks 5. wisdom on how to parent her during this time (trust me, this one is hard) 6. the Lord’s continual Hand of grace and peace each day for all of us

Craig for the rest of the crew

Needless to say, we are surprised, but VERY excited. We are thankful for this HUGE blessing in the middle of this hard time. Ariana says “Paze God!” (translated “Praise God”).

Love,

The (prolific) DeLisi’s

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