Worn out

I returned from my business trip on Thursday, and it is evident that Kateli is not feeling well on the steroids. Since I've been home, she has been resting on one of our shoulders or actually taking a nap on the bed the entire time. Her body seems weak, and she doesn't really have any energy to do anything. Her eyes have dark circles underneath and she just plain looks sad. It is very difficult to see our little girl feeling so lousy, and to not be able to do anything to help. We've taken her to the park several times- but she doesn't seem well enough to enjoy it as much as usual.

On the bright side, Kateli got to spend some time with Grandma this week while I was out of town. She enjoys time with Grandma, and has been asking- "Where is Grandma?" ever since she left for STL.

Please continue to pray for Kateli's health and that she has renewed strength for each day.

Dan.

Chugging right along...

is what we have been doing the last few weeks. I apologize for the lack of update, but things are just a bit hectic around here, especially when our little girl is on steroids. We shared with you that Kateli is now on the 3rd of 4 phases of her treatment. She continues to do well with the medications. The steroids seem to have the biggest effect on her, in that she appears to be more tired than normal. She asks to take naps, and she is ready for bed much earlier than the norm. Aside from this, our little girl continues to just be herself. Bedtime is getting a bit easier. We have managed to transition her back into her own bed upstairs, and although she ends up in our bed in the mornings, she doesn't fight to go to sleep too badly these nights. I think it helps that her little brother is sleeping upstairs now too. She doesn't feel like she is up there alone!!

As expected, Kateli's appetite spiked as a result of the first 7 days of steroids. We've had a week break from the steroids and just started the next round today. So far, so good. She has been eating rather well, not too much not too little, but just enough for her little body, I think. She has had her requests, and it seems "sgettis" are a favorite, as I've been cooking it a LOT the last week or so....Joshua doesn't fall behind when it comes to eating, so I'm making enough for the both of them!! Kateli's counts are a bit low this week, but the nurse said that it is to be expected. However, as Dan shared in the previous post, low counts will not introduce a delay this time around so we are just "chugging" right along. Please pray that her counts do come back up though, Next week, our clinic appointment is for blood counts only. She will have another week of rest from the chemo. The week after that, though, will be busy. Our appointments will change to Tuesdays, starting on July 22nd. That day, Kateli is scheduled for a spinal tap, and an overnight hospital admission because of a chemo that will be administered. God willing she will be released on Wed and we will need to visit the clinic each day that week, through the next week for daily admins of the same chemo drug.

You can specifically pray for the following:

• Please pray that Kateli's numbers will come back up by next week.
• Please start praying now for the week of the 22nd of July. Pray for God's protection on Kateli as we go through that week.
• Please pray for continues protection over Kateli's body, her organs and her normal cells as she continues with this chemo regimen.
• Please pray for strength and endurance for all of us during this process.
• Please pray that Joshua will continue to be the happy and content baby that he is, as he turns one soon, and will begin to explore in new ways--specifically by WALKING!!

Thank you for keeping up with our family and updates on our little girl's treatment.

Slight Change to Protocol

Thank you all for your prayers this week as we enter the Delayed Intensification Phase of treatment. Katherine's counts were above 900 which is very good, and we are able to continue with treatment as scheduled. We got some additional schedules this week, and found out that they have changed the standard protocol within the last month, so I'll have to update the chemo schedule calendar with the new changes. This phase was supposed to begin with 21 days straight of steroids- but they have changed that to 7 days on/7 days off/7 days on. Apparently lots of kids were having significant problems with weak bones, so they've shortened the duration and upped the dosage to compensate. Please pray for bone strength for our little girl. I can't imagine Katherine with a bone fracture in the middle of all of this...
Also, I think that we will continue with treatment as scheduled regardless of Katherine's counts from here on out. The only thing that will be adjusted due to low counts are the oral chemo drugs that we administer at home.

Katherine is visibly exhausted today. She has dark rings under her eyes and is not her normal energetic self. I think this is a result of the steroids. Her appetite is not elevated like it has been during previous iterations of steroids, but this will probably change in the next couple of days. We're actually hoping that her appetite increases a bit, since she hasn't been eating all that well lately.

Joshua, on the other hand, eats EVERYTHING. We took him to the high school track on Wednesday evening to watch mommy do some laps around the track. Half way through, I had to remove some large pebbles from his mouth as he decided to eat the sand from the long jump pit....

We thank you for all of your prayers and support.
Dan.

Prayer as we enter tne new phase...

Kateli has been taking Chemo for a little over 4 months now. Tomorrow is the beginning of the third phase of the treatment. God willing, we will begin Delayed Intensification. Our appointment is scheduled for 8:30am. Kateli is scheduled to have a spinal tap, given that her numbers are high enough. She has been such a trooper thus far, and we pray that the treatment will continue to be tolerated so well. Kateli is a HAPPY girl. Her smiles are contagious, her kisses, and her hugs make my heart melt. She is beautiful inside and out. Each time that I look at my little girl, I realize how lucky we are to have her in our life. God gave us a precious baby, a baby girl that is growing so fast before our eyes, who amazes us each step of the way. She's definitely TWO though, no doubt about this fact. She is strong willed, opinionated, and a little stubborn--but somehow, I think that, if we, as parents, set the foundation right, these traits will take her very far in life. She is talking SO much, she speaks both english and "pañol" as she says...I'm not sure if she distinguishes between the two quite yet, but she says things in both languages. Just the other day, we were sitting at lunch with a friend, who asked me what "grape" was in spanish...just for kicks, I turned to Kateli...her response? "uva"...I was taken back. She translated correctly, and immediately!! What a smart cookie--takes after her daddy! :) And how she loves her little brother--she does not fail to ask him each morning "sleep good, mano?" with a look that says "I'm interested and I care" Joshua loves her right back. His eyes light up when he sees her...it's the best feeling to sense how much these two kiddos love each other.

Please pray for our family in the following ways:

• Our appointment tomorrow morning. Pray that the doctor has had his rest so that he can focus completely on our little girl during the procedure.
• Pray that Kateli reacts just as well as she has been to the treatment thus far.
• Pray that we can be better about managing her "hunger" this time around with the steroids. She will begin taking the steroid again tomorrow. She will be taking it for 21 days.
• Pray for rest, especially for yours truly. I seem to be suffering from some insomnia lately and it's taking a toll on me. I'm physically worn out and my patience runs short.

And please just pray for us in whatever other ways the spirit moves you. Just please don't stop praying for our little girl!

Counts Back up

Good news. Kateli's counts were 900, so we resumed Chemo treatment today. She is still battling a cold and has a deep cough from time to time, but other than that she seems to be doing well.

Tonight I got to watch the kids while Marleny had a girls night out. I took the kids out to the park where we had dinner and played on the swings. Katherine was talking up a storm the whole time. On the drive to the park she was interogating her brother, "where is mommy?". That is one of her favorite questions these days. Joshua didn't reply so she just kept asking. She usually asks me that the entire time that Marleny is away, so I was enjoying not being the one on the hot seat for a change.

Joshua is crawling all over the place and really enjoys standing up. Actually, he seems to really enjoy everything. That boy smiles all the time and laughs at everyone. He has the gift of making you feel good about yourself- he smiles when he sees you & laughs at your jokes. It is a blessing to have such an easy going son during this difficult time.

A hiccup in the chemo road, and a trip to the Urgent Care

Well, Wednesday morning Kateli's blood work showed that she is neutropenic again. Her ANC is down to 224, so we are delaying her chemo for the next week and hoping that her numbers rise so that we can continue with the treatment.

She's been a bit under the weather since about Sunday, but it had just been a mild cold--runny nose, and cough. This afternoon, after nap time I loaded up the kids (one in the stroller, the other on my back in the carrier) and the dog and we went for a walk, and a stop to the park in our neighborhood. Kateli seemed to be feeling fine, before we left...but that changed while we were out. About 20 mins into our stay at the park, she said "mami, home" so we packed up and walked home. Kateli wanted to ride the backpack, but the entire trip she acted so tired and sleepy. We got home, and both kids lost it. Joshua was in tears, Kateli was screaming and feeling a little warm. I took her temp, and she had a low grade temp. She also informed me that she hurt in her ear, and would not stop poking at it and screaming. SO, I made a call to the doctor's office to see how we should proceed. I knew for sure, she had to have an ear infection and I wanted to nip in the bud before it got out of hand, especially knowing that her counts were low. So, we made a trip to the Urgent Care clinic. The doctor checked her out and informed us that she doesn't just have infection in ONE ear...both of them are RED!!! My poor baby!! She had not complained one bit, until this afternoon but she must have been in some major pain. We are at home, and praying that she doesn't spike any fevers overnight, or the next few days.

Please pray for her recovery from the ear infections, from the cold and that her numbers rise so that she is not so susceptible to infections.

As always, thank you for keeping up with our progress.

Once again, good numbers and we continue on...

Kateli has been doing marvelous. God continues to amaze us through her strength, how well she is tolerating all that she is going through and her high and happy spirits day in and day out. We went to clinic on Wednesday as is customary, but this Wed was a full day. In clinic Kateli had a spinal tap to administer intrathecal chemo, she was given another chemo through her port; we came home and she took her normal meds at home and also started another 5 day cycle of the steroid. So, by the end of the day she had taken in 4 chemo drugs, 1 antibiotic, a steroid and a bit of pepcid, just to prevent her belly from getting too upset at us for all those medications!! We dreaded the arrival of our clinic appt, because we went in knowing all that she would have to take that day, and it was difficult to digest (literally)! But, once again SHE is amazing!! She is so strong. She is so resilient. She just bounces back and is Kateli through it all!! How wonderful it is to know that God is watching over her, providing her and her little body with the strength needed to withstand this harsh treatment! How amazing it is to witness God at work first hand with our beautiful little girl! She gives us strength. Her smiles and her perseverance give us so much encouragement in this trial that we are in.

I do want to ask for prayer for her, though. Over the last two days she has come down with something. We think it's a cold, and are hoping it's just mild. She has not been running any fevers, but she just has doesn't seem to be feeling well. Though you ask her if she feels okay, and she'll look you in the face and say "yeah" with a HUGE grin!! Please pray that this is a mild cold and that it clears up fast, without any complications.

Thanks for keeping up to date with our ongoings!!

Numbers are good for another week

Praise the Lord. Katherine's counts are where they should be, so we are continuing with treatment as normal. The schedule is becoming routine. I hope we don't take for granted how good it is to be on schedule. Katherine is doing awesome, she really has a lot of energy like the Katherine we're used to. Her hair is growing back, although our nurse preps us by saying, "it will fall out again".

Please begin praying now for our appointment next week. Kateli will get many medications on Wednesday (6 including a spinal tap). It seems like a whole lot for a person to handle, especially a little one like Katherine.

We had a fun week this week, celebrating Marleny's birthday. She is ## years young now. We had a fun surprise visit from her sister Marta, brother-in-law Misael, and niece Daniela. I'm sure Marleny will post some pictures when she has an opportunity. She took some great one's of the kids.

Another good report

New feature on the blog this week- check out the translator gadget on the right. Since Marleny is asleep, I don't really know how well this thing translates into Spanish. For all of our multi-lingual visitors- give it a whirl and let us know how it reads in other languages that you know.

As Marleny mentioned this week's appointment was just a CBC blood check. Kateli's counts were above 700, so we're continuing on schedule. We had a fun time at the hospital today. We got to meet the helicopter crew for life flight and Kateli got a stuffed animal from the pilot. We stayed to watch them take off, which Kateli really enjoyed.

We also played outside on the playground waiting for the lab results. We sent the stuffed animals down the slides and watched them tumble on the ground. Kateli said, "Silly, silly daddy". She cracks me up.

Thank you for your continuing prayers.

It's been a while...

since the last blog entry that we posted. I'm sorry. Life just seems so busy these days, I don't know that there are enough hours in a day to get things done that need to get done, much less those things that are on my "want to do" list. Anyhow, enough of excuses...let me just update you.

Well, like they say, no news is good news. And that is what we have on our end. Kateli has been doing GREAT!! It truly amazes me each day to see how well she is doing, how well her body is tolerating the meds, and how upbeat she is about life in general. She is zealous about EVERYTHING around her. She loves her mommy, daddy, and "baby josua" among MANY MANY other people in our life right now. There is not a bit of sadness, discouragement, or disillusionment in her with all that she is enduring at her 29months of age. Tomorrow marks the 3rd anniversary since her diagnosis and we are truly blessed by how God has been working in all of us, and continues to do so each day. Over and over He continues to show us His faithfulness and His love for us and for Kateli. Her heart is so full of joy, her face glows with never ending smiles, and her laugh sounds like music to our ears. She loves to giggle, she loves to be silly, and lately her deal is pretend play. I know it's a stage. She is at that age right now, but it is so sweet to watch her pretend to be a mommy...oh, and is it ever so humbling and eye opening. She definitely SEES and HEARS all around her, and she pays such close attention to all that I do. She is like a "mini-me mommy" to her baby!! Good thing, I try to be a good mommy!!

Last Wednesday our appointment at the clinic was to check her blood counts. It was a short appointment and we got home with good news. Her ANC was up at 900, so there was no need in delaying her treatment. This Wednesday we go back again for yet another blood test. She will not get any meds in clinic, but we are continuing the daily chemo at home, among other meds that she takes at home with us. Please pray that her counts continue to stay about 750--even higher is a plus!!

Thank you so much for visiting our blog and staying up to date with our little girl's progress through this journey. We truly appreciate your concern and your continued prayers for her and our family.