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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

Entry 28 Wednesday August 1 Treatment Day 80
Entry 29 Thursday August 2, 2001 Treatment Day 81
Entry 30 Wednesday August 8, 2001 Treatment Day 87
Entry 31 Saturday August 11, 2001 Treatment Day 90
Entry 32 Saturday August 18, 2001 Treatment Day 96
Entry 33 Monday August 27 Treatment Day 105
Entry 34 Thursday August 30 Treatment Day 108
Entry 35 Sunday September 2 Treatment Day 111
Entry 36 Friday September 7 Treatment Day 116
Entry 37 Saturday September 29 Treatment Day 137
Entry 38 Thursday October 4 Treatment Day 140
Entry 39 Tuesday October 23 Treatment Day 158

Hey all.

We’re headed back to the hospital on Thursday to attempt readmission for Ariana. Please pray that her white blood cell counts will be up and that she will do well with the procedure (which I’ll be able to attend) and generally have an uneventful admission. Please also pray for protection from infection as she has been neutropenic (low white blood cell counts) for a while now and they are making us not give her the antibiotic that she usually gets because that can lower her count as well. Please especially pray for Tonya for emotional endurance. It requires a tremendous amount of emotional energy and physical preparation to prepare for these admissions. Each time we don’t get to go in, it means we (she) will have to prepare again for everything in just a few days. Being in the hospital, even for just a few days, can really suck the life out of you. It is a lot like being in jail, except that everyone is nice to us :-). Again, we are SO thankful that she is doing so well. We certainly keep things in perspective, but it is just hard walking it out daily.

Thanks for your prayers.

Still a no go. Ariana’s white blood count was about 4-5 times LOWER today than on Monday. in fact, it is as low as it has ever been (ANC ~ 100 for those who understand). The told us to come back in one week to recheck it.

The may likely lower the dose of Methotrexate during her next course. Please pray especially for her protection from infection now in particular. If she has a fever, she will be admitted for some heavy duty antibiotics (vancomycin, Zosyn, etc).

Tomorrow (thurs) we will try to go into the hospital again. Ways we would appreciate prayer:

The doctors may adjust her dose of Methotrexate if they think her counts have stayed low as a result of that. Please pray for wisdom for them as well in her management.

Thank you so much for those of you who prayed for us. Ariana’s counts were up, the procedure went well, and the stay was generally uneventful. They just let us go an hour or so ago (a bit early). Tonya did great, and Charis was well taken care of. Once again, my residency family was flexible and helpful to us, as well.

I just wanted to ask you all to please pray for our munchkin. Ariana’s white blood cell counts continue to be low (neutropenic). While this isn’t completely unheard of, it is not expected at this phase of treatment.

We have to continually not give her the medicines she is supposed to have so that her counts can come up. Talking to the doctor yesterday, he basically told me that the main goal is to get Ariana’s Methotrexate doses on time. They have already lowered this dose. Next, they may lower the dose of the 6-MP.

1) Ariana is more susceptible to infection during this time which means we have to take even stronger precautions about being around others, especially kids. She basically can’t hang out with any kids unless we are SURE they haven’t even been exposed to other kids in the last week or so.

2) If Ariana gets a fever, for any reason, we will be back in the hospital for 2-3 days on strong IV antibiotics. This is obviously not fun for any of us.

3) Her known prognosis (very good) is based on data from kids on the drug regimen that she is on. We are unsure how lowering the doses and skipping lots of doses will have an effect on this.

We really do feel like the Lord has protected Ariana from infection during this last month or so that she has been neutropenic. We have felt His covering that is in large part due to your prayers. Thank you for that.

3. wisdom for the doctors on how to make the necessary adjustments in the medicines

4. healing from/protection from further mouth sores and other side effects of the medicine

5. that His Peace and Presence would continue to be known to us in each moment.

PS. For those wondering, tonya is feeling pretty good. She unfortunately is having her classic and unique 2nd and 3rd trimester nausea and gagging. She is also slightly more tired than usual. None of that seems to bother her too much, though. She just LOVES BEING PREGNANT. I don’t think that is a shock to anyone.

Monday August 27 Treatment Day 105

Howdy ya’ll.

We go back to the hospital for an attempt at admission again this Thursday. We are hopeful that we will get to go in on time. We would really appreciate it if someone would fast for Ariana on Saturday (the last day of the admission).

Ways you can pray:

1. good white blood cell counts
2. uncomplicated lumbar puncture
3. protection from infection and fever
4. no side effects from chemo drugs
5. protection for baby in belly (BIB)
6. patience and joy while in the hospital

thank you all for your continued love and support.

Craig, Tonya, Ariana, Charis and BIB

Thursday August 30 Treatment Day 108

Hello family~

We are home….total neutraphil count of 300…..no admission!  We are trying again on Tuesday, September 4th. Please pray for wisdom for my mother….she was planning to fly home Monday, September 3rd. Please pray for future wisdom since people were planning on flying out to help with the next three admissions and at this rate, we can not give ANY EXACT DATES (or anything within two weeks).

Please pray for the length of the treatments with all these delays, since at this rate we will be having admissions up until the next baby’s arrival. Thanks for all your prayers and support!

Tonya, Ariana, Charis, & Baby In Belly

Sunday September 2 Treatment Day 111

Just wanted to ask you all to please pray for me again as I go to get admitted on Tuesday. Hopefully I can go in this time so that Mimi will still be here. She needs to go home soon. Mommy and daddy said that they appreciate all of your prayers. I do too. even though my bone marrow isn’t making enough cells, I feel great!

1. great white blood cell counts
2. great spinal tap
3. no problems with the yucky medicine
4. fun at the hospital for me (seeing Skippy the bunny, eating popsicles, watching videos..)
5. fun at the hospital for mommy and charis
6. protection for my new baby sister or brother from my yucky medicine

We are back from the hospital. Actually, we got back yesterday, but forgot to write (I know all of you are just sitting at the edge of your seat waiting to here :-)). Thank you for praying. Things went very well. Ariana is buddies of all of the nurses and techs in the hospital. She even renamed the peds-onc doctor who has been there for 12 years. She started calling Dr. Kirkpatrick "Popi K" all on her own. Now even the nurses up there who used to call him "Dr. K" now call him "Popi K". it is very cute.

Well, Mimi left today (tonya’s mom) after being here for nearly 4 months. Life is about to change for us in a major way. We cannot explain what a blessing it was to have her here for so long. Tonya did not do one piece of laundry. I only mowed the lawn one or two times. She did the work of 4 or 5 people. We are sad to see her go to say the least. At the same time, I think it will be good for us to get back into our normal roles. Please pray for an extra measure of God’s grace to sustain us in her absence. Also pray for wisdom in how to handle the next 3 admissions since we probably can’t fly friends in because we never know that she will actually be admitted.

The doctors are going to alter the doses of her treatment meds. They already reduced the amount of Methotrexate by 25%. At this time, we are not going to give her the 6-MP for the next few weeks. If she gets admitted on time (meaning her counts are up), then we will increase the Methotrexate back up to the full dose. If the next admission is on time, we will add the 6-MP back. She still isn’t getting the Bactrim for PCP prophylaxis. They may give her pentamidine either nebulized once a month or orally daily.

Thanks again for your prayers. Please pray for ariana’s "ginie" (vagina) which is very "hot" from the methorexate urine and has kept her up 3-4 hours each of the last 2 nights.

Just a quick note to ask you to please pray for Ariana’s upcoming admission on Monday morning. We just returned from a week away at a retreat site in the woods with my residency. It was a particular blessing to her to not have to wear a mask or be kept away from the other kids since their parents were kind enough to keep their kids out of child care for the week leading up to the retreat. She got to enjoy the woods, see some horses, and ride on a hayride.

They are planning on increasing the dose of the Methotrexate back up to the full strength on this admission. Her counts have been incredibly high the last couple of visits, so we expect them to continue to stay high.

Tomorrow (Sunday), Charis will be baptized at our church. We will also celebrate his 1st birthday, which was today. He is growing into quite the handsome, sweet guy.

4. no side effects from the meds thank you all. we appreciate your continued prayers.

We’re back from the hospital. Thank you for praying for us. Ariana did quite well. The procedure went great, and her counts were high enough for admission. The stay was as good as can be expected. Other than being woken up every two hours during the night for vital signs and diaper changes, it was great.

We did have a little scare the night before we left. Charis developed a fever of 102. We had never dealt with him being sick since Ariana was diagnosed. We didn’t know how to keep the two of them apart. The next day Tonya developed some upper respiratory symptoms and a low-grade fever.

By our first day in the hospital, Ariana had a cough and hoarse voice. We asked the Lord to spare her from any fever (because that meant she would get put on strong antibiotics and kept there for days longer), even though both Charis and mommy got one. Amazingly, she has not had one, and most of her symptoms are resolved! It must be her strong immune system that prevented it :-) (yeah, right!). Yet another "small" prayer that our God answered to show who is in control down here.

From a few days to a week after the treatment, Ariana’s sleeping is still very disrupted. We aren’t sure if that is due to the pattern set in the hospital or just her feeling yucky from the medicine. Also, she has had pain from skin breakdown around her vagina and anus the last two times. Please pray for these.

One quick funny, albeit gross, story…. Yesterday night when my parents had gone home and it was just the three of us, Ariana started coughing up some phlegm. She didn’t know what to do with it, but she didn’t like it. Then she started coughing harder and started gagging. We knew what was coming next (or should I day coming UP next). She threw up all over the bed. Tonya, who was holding Ariana did her best to keep it down, but the smell was more than her pregnant, gaggy self could bear, so she puked right next to where Ariana just had. I relieved Tonya, and fortunately, broke the puke-fest cycle. When the nurse came in to help us out, it was quite a site.

This Thursday we will be attempting another admission with Ariana. If her counts are good, we she will have a spinal tap in the morning and then get admitted for chemo. She has been doing great. Thank all of you who have been praying.

Please pray for Tonya. She has had a rough last couple of days. She is really "feeling" pregnant and like it is time to deliver although she is only 24 weeks. She usually has nausea and vomiting for the duration of her pregnancies (not just first trimester like the books say). The kids are a blessing, but she can’t just call for a "time-out" when she feels bad.

My schedule is better than last years, but I am still gone most of the time. With all that said, she absolutely LOVES being pregnant, and you wouldn’ there so much as one complaining word out of her mouth. She does need His grace, though.

We are going to try to do this hospitalization without any help from family for the first time. My schedule is rather open, so we figure it is best to save our Southwest Airlines coupons for the next admission to fly family in. Please pray for wisdom for nighttime. Neither Tonya nor I want to leave Ariana to come home to sleep with Charis. We may try to keep him there with us, but he is a light sleeper, and the staff come in EVERY TWO HOURS at night to take vitals, make me change her diaper, etc. Tonya isn’t supposed to handle her urine, so I don’t want to leave her.

4. No side effects from Methotrexate (this last round was AWESOME as far as this goes!)

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