Then, now & in-between

So, I've been cleaning up my picture files and came across some really cute shots of Kateli before she was diagnosed. It's been nearly 7 1/2 months since the diagnosis and we've come a long way. She's grown so much, both physically, emotionally and in strength and persevarance.

Here is our little girl about 7 1/2 months ago...

Here she is now...

and this was in between.... A lot has changed...but you know what remains constant?? Her beauty, inside and out, and her happy heart no matter what!!!

Maintenance

Katherine's counts were still a bit low on Wednesday, but high enough for us to proceed with treatment. So, we have made it to the MAINTENANCE phase of treatment! It has gone by very quickly up to this point-it is hard to believe it has already been 7 Months since diagnosis. Praise God for his abundant provision of strength, healing, and peace.

We will continue the same course of treatment from now until April 30th, 2010.
Treatment consists of:

• Oral Chemo # 1- Daily
• Oral Chemo #2 -Weekly
• Oral Steroid- 5 days per month
• IV Chemo- Every 4 weeks
• Spinal Tap Chemo- Every 12 weeks
  

Thank you all for your prayers, encouragement and support. We are blessed by you all.

This week the kids are a bit under the weather with colds and mild temperatures. Please continue to pray for our health during this time of changing seasons.
-Dan.

Update

Thank you for your prayers. Just a little update to tell you that I'm feeling much better. I went to see the doctor yesterday and was prescribed the 7 day pack of steroids, so I think these are working. I'll just keep my fingers crossed that it all goes away!

Kateli and I went to clinic this morning. She had an appointment to check counts today. We found out that her platelets and hemoglobin are back up in the normal ranges, and that her ANC is coming back up. She is still a little neutropenic but 350 sounds a heck of a lot better than 0, which is where she was at a week ago!

Again, thank you for your continued prayers.

Keep praying...

Please don't stop praying for my allergic reaction to subside. I thought I was doing much better yesterday, as I had no need to take any benadryl or any other type of medication after the steroids shot. I thought I was on the mend. Last night, after dinner and putting the kids down for bed, I jumped in an aveeno bath, I thought to relax me and get me right to bed. I think my skin has had enough baths, I'm super dry!! Anyway, went to bed no problem. About 45 mins ago (It's now 5:20am), after tossing and turning in bed for the hour before that, I finally got up and ran to the pharmacy again to get some more benadryl!! I felt like I was on fire!! My body felt like it was giving off more heat that I could stand and my torso and calves itched like crazy!! I think I need to call my PCP doctor today and see what I can do for this. In the meantime, please keep praying that this would subside, it's not comfortable and it's not pretty at all!!

thanks

We're home, and I need prayer

Well, we made it home from the hospital on Friday afternoon. Kateli was released, and we came home without the antibiotics we thought we'd come home with. The doctor said that everything indicated that her ANC was coming back up and there was no need to do medications at home. The next two weeks are rest time for Kateli from the chemo, and then on the 27th she starts Maintenance (given that her numbers are high enough) Since we've been home, Kateli seems to be doing well. She acts fine and has lots of energy so that's a plus. Thank you all for your prayers for her recovery and her coming home. On another note, I'm going to ask prayer for myself. I must have eaten something on friday night that my body didn't like and is making it CLEAR!! I woke up Saturday morning with hives all over my torso, my legs and my neck. It's horribly painful and itchy. I've been taking Benadryl every 4 to 6 hours and am getting some relief from the itch, but it won't go away!! I'm also bathing in aveeno oatmeal baths twice a day to see if that helps. The first and only other time that I've had this type of reaction was shortly after finding out we were pregnant with Kateli, and since I was pregnant I couldn't take ANYTHING for it. This time it's different, I know that I'm not pregnant so I'm taking medicine to make it stop, but it won't subside. Please pray for me, that this would go away FAST as I cannot stand to be touched right now...so I can't hold the kids too much and I spend a lot of time in bed due to the benadryl knocking me out. Dan has been great, he's taken on watching the kids and taking care of me without complaining....what a great hubby! I'd post a pic of my torso, but it's just not appealing at all, it's HORRID! This afternoon I gave in and took a trip to the Urgent Care clinic where I was given a steroids shot that will supposedly help with this condition. Please pray that it works!!!!

In the meantime, I leave you with a couple of pics of the kids this weekend.

Not sure when we'll be home

If you read a typo or two it is because I'm typing one-handed. Kateli is resting & won't let go of my other hand. She seems to be feeling really well, but is getting a bit restless here at resort St. Francis. We've exhausted the list of foods she will eat from the menu, and are getting a little bored with looking out the window at cars. It's much more exciting overlooking the helicopter pad, but that's on the other side.

Kateli's ANC count is at ZERO, so she is extremely susceptible to everything. The Dr.s are obviously reluctant to let us leave with her in this condition. The good news is that she hasn't had any fevers since the morning we arrived, and nothing has shown up in any of the cultures. The platelets and transfusion went well on Tuesday- she seems to have a lot of energy and strength overall.

If Kateli continues to feel well, they may send us home with IV antibiotics and let us care for her at the house. It may be a little bit more work for us, but it would let us all be in the same place and away from the sick folks at the hospital (overall much better).

Go U.S.A (we've had lots of time to watch the olympic games- no complaints there)

Thanks for your prayers and support.

D, M, K & J

Back at St. Francis

We were a bit distracted with all the fun celebrating Joshua's birthday this morning. However, although our little princess got up acting like she felt great, we realized she felt quite warm and to the touch. Checked her temperature and found out she was running nearly 102 temp!! Immediately we got on the phone, and well...to sum it up we spent the rest of the day in the hospital. Kateli had low counts, low hemoglobin and low platelets counts. She had to have a blood transfusion, platelets transfusion, an antibiotic administered, and be admitted to the hospital for at least a one night stay. So, a year ago today we were in the hospital celebrating the arrival of our little guy. Today we were in the hospital concerned that our daughter gets to feeling better soon. God has his way of saying, "you have to remember what is important in life"...it's not a birthday celebration necessarily, it's remembering that we are a family and we stick together no matter the circumstances! Thank you Lord for being so wonderful and loving. Despite the circumstance, we praise Him for being a God who loves us and blesses us in ways that are beyond our measure and understanding.

Please pray for Kateli as she recovers from whatever her body is fighting right now.
Please pray for wisdom for the doctors, that they may figure out what might be causing the fevers
Please pray that her marrow catches up and generates the needed hemoglobin and platelets needed in her little body
Please pray for strength for us all as we wait for her to come home
Please pray for wisdom for us as parents, that we would make wise decisions in her care

Thank you!!

Almost finished with Delayed Intensification

We are cruising right along with treatment, and only have 1 medicine remaining this week to complete the DI phase of treatment. As of Friday, Kateli's blood counts were a bit low- bordering on requiring a transfusion. We are watching her energy level and praying that we don't have to do a transfusion. We have another blood count check scheduled for Wednesday, which should also be the last day of meds for about 2 weeks. Then we hope to begin Maintenance!!!!

Kateli has done amazingly well with the 2 drugs that cause most of the side effects during this phase- so that is an answer to many prayers. She is laughing, playing, and taking care of her little brother like usual.

An update on the Marathon training- We all went for a little 11 mile jog this morning. The weather was quite a bit cooler than the past couple of weeks, so the kids didn't fuss at all. Either that, or I had my headphones turned up higher this week. ;) Marleny and I only fussed a little bit.

Thanks for your prayers and support!

D, M, K & J

TMI

Yesterday I took Kateli in to the clinic because mommy got stuck at the gym when the remote to the car fell apart- leaving her no way to get home before our appointment. It was probably a blessing in disguise, since our morning appointment was going to provide too much information on the treatment we are currently going through.

In the play room where we wait for the blood work results, we met a girl with ALL that we'd never met before. She was very outgoing and quickly started providing us with her detailed recollections of the worst part of her treatment. Something in me told me I didn't really want to hear what she was going to tell, so I tried to indicate where Kateli was with her treatment, so the little girl or her mother might withhold her less than positive experience. It didn't quite work. She withheld nothing, and her mother added in way TOO MUCH INFORMATION.

She began with, "Mom- what was the name of that drug? Something with a 'C'." Her mom confirmed it was Cytarabine. Yep- they proceeded to describe her adverse reactions to 2 of the 3 drugs we were supposed to start that day. Cyclophosphamide had made her face feel like it was on fire, and they had to stop giving it to her and start her on benadryl. The Cytarabine gave her a 106 degree fever over the next 2 weeks and she spent most of the time in the hospital. Not the most encouraging words for a parent who is hoping that his daughter's counts are high enough to get to do treatment that day.

Good News- Katherine's counts came back at 1880! up 1600 from last week. Well it is what we were hoping for, but at that point I was a little bit nervous about starting this part of treatment. They put Katherine on fluids because they have to flush out her system before they start the Cyclo... They couldn't give her the Cyclophosphamide until around Midnight, and Katherine was a little restless throughout the night. Other than that, not complications or side effects to this point. She is a little bit worn out but has not had any noticeable nausea. Katherine did awesome at the hospital and complained very little.

We ask for your continued prayers over the next 2 weeks as we finish up the "Delayed INTENSIFICATION" phase, since we've now heard first hand how awful it can be.

Please pray that Kateli does not have any severe nausea or fevers from the drugs, and that she is able to rest well at night and has strength for the days. Please pray for our strength as we care for her- we have many appointments at the hospital over the next few weeks.

Thanks for your support.
Dan

with my eyes closed...

So, I have to share this funny story before it gets lost in my mind! :) Each morning when we all wake up it is customary for me to say to the kids "buenos dias, como dormistes?" this means "good morning, how did you sleep?" Usually, I just answer the question for them and say "rico" or "good/yummy"...well, this morning I got a different, more accurate response from our little smartie pants Kateli. She came in our bed and was all smiles and giggles. I looked at her and said "buenos dias!! Como dormistes" She didn't hesitate one bit before answering. Picture this response...she looked at me, smiled really BIG, shut her eyes and said "eyes closed"....how much more accurate can you get?? I mean really, who sleeps with their eyes open?? I was tickled, hope you got a kick out of that too....