Home at last

Katherine has been free from fever since Friday night, so we were released from the hospital this afternoon. She has been acting like she is feeling very well. She's been more like herself the last 2 days than she has since we started the treatment over a month ago.

It was kind of funny today when we were about to leave, I asked Katherine if she was ready to go home. Her answer was, "No, stay room". I guess it's a good thing that she enjoys her time in the hospital. The hospital had some Seasame Street Characters come in to entertain the kids on Friday. Katherine is a cautious girl- she was not very trusting of the very large cookie monster. She said, "Cookie Monster no eat Kateli". One of the local news channels had a camera there and was taking footage of the event, and had us sign a release to use the footage.

On Saturday I met the family in the room next to us. It was the mother of a 4 year old girl that also has ALL. The first thing she said, was that she saw us on the news Friday night. We have yet to see the news segment, so we are trying to get a copy from the TV station. It was interesting to talk with another family who is also going through treatment for ALL.

Well the kids are up from a 2 hour nap, so I must go play.....

6 out of 7

6 out of 7... 85.7% --not bad if your taking a school test-- but not so great when your counting days spent in the hospital over the last week. That's right, we're still here and will be here for at least another day, since Katherine had 102 fever again tonight. At times it feels as if we're stuck on Gilligan's Island. Everything looks good for getting out of here, only to be foiled at the 11th hour.

The good news- the hospital is less than a mile from our house. We're, once again, learning to ask for and eagerly accept help. We have medical insurance. We have Dr.'s and nurses who are caring and dedicated. I have a boss that is understanding and flexible. Most importantly, we have a God that knows us, cares for us, and has a purpose for us in/through all of this.

I (Dan) almost lost it on Tuesday evening. The stress of trying to lead our family through this trial, with all of the stressors and the unknowns that are un-researchable. The difficulty of trying to communicate with my wife while nurses are coming in and out of the room, and while our kids are needing constant attention for the 2 hours we're together each day. I felt like throwing a chair through the window for no specific reason that I could articulate.

Fortunately, we got a break mid-week that allowed me to go for a run around the park by our house and the hospital. A cool thing about the new Children's Hospital is that they have a spot light on the top of the building shooting straight up into the sky. We can see it from our front yard, and I can see it as I run around the park. For me it is somehow comforting, like the hospital is to be a light in a dark world.

As I was running, I was listening to a song by Aaron Spiro, "Begins and Ends with You". A couple of the lines spoke words I needed to hear.

in your peace we find our peace

in your strength we learn to stand

in your arms we find release

in your hands we are your hands

I believe that a purpose for this trial in our lives is that we learn to find our peace, strength, and release in Christ alone. That we can be the hands of Christ for others, after we fully understand what it means to be held in His hands.

Thanks for all of your prayers and support. For those who are interested, we've added a Calendar with Kateli's Chemo schedule (On the section to the right). The schedule is updated through this summer. After that we will begin the Maintenance portion of treatment that will go through 2010.

Under Observation for the night...

...at least.

We've only been home a little over 24hrs, but it's back to the hospital tonight. Kateli was doing and feeling great this morning. She woke up happy, played, we even went in the backyard to enjoy the warm weather, and play on the swing. She played with chalk on the back patio, and played with Renny. After waking up from nap, though I got a different little girl than I put down. She must not have been feeling all that great after she woke up from naptime. She was quiet and wanted me to hold her a lot. She didn't feel real warm, so I thought it was just her coming out of a nap. About 4 o'clock, she felt a little warm to the touch. She was at 100.3. I called the clinic to see how we should proceed. The doctor said to watch her for a little bit and see if the temp didn't come down on it's own. She asked me to call back if Kateli's temp went up above 101.5. So, we waited. The temp didn't come down, in fact it was 102 when I took it about 5:30 after daddy got home. Quickly called the doctor to get further instruction. The doctor debated whether or not to have us come into the hospital. After all, Kateli had just been released yesterday. Her numbers were great, so she's not neutropenic. All of the cultures that were done on her blood came back negative. However, because of the lumbar puncture that she had yesterday morning, the doctor had us come in just to observe her through the night. She thought it best to err on the side of caution, since the procedure had been real recent. So, off they went. Dan took Kateli to the hospital and will be with her overnight, while I stay home with Joshua.

• Please pray that they figure out what her little body is trying to fight off.
• Please pray that her number stay high, so that her body has what it needs to fight off whatever this is.
• Please pray that the fevers break soon.
• Please pray for rest for her tonight.
• Please pray that she will drink better, to stay hydrated and keep the temps at bay.

Thanks again for visiting our blog, and for your constant prayers.

Quick update

Thank you for your prayers!

Just a quick update. We are home from the hospital. We will be sleeping in our own beds tonight!! Woohooo!! Also, Kateli was randomly placed in the Standard treatment arm of the study. We are good with that.

Again, thanks for visiting our blog and keeping up with us!! More later.

Who's in control here anyway?

That's the question that I've been pondering these last two and half days that we've been sitting in the hospital with Katherine. Consolidation, the second phase of Katherine's treatment, begins tomorrow--Wednesday. Dan and I have been trying to decide whether or not to participate in a case study for the remainder of the treatment plan, and in a way it feels like we are trying to take control over something we can't really control.

Let me back up just a bit. When we started the treatment, we were given consent forms to sign if we wanted Kateli to participate in the national Children's Oncology Group study. Every child with standard-risk ALL is asked to participate in this study; as it is a means to improve the cure rate (currently 80%) for Acute Lymphoblastic Leukemia. The first portion of the study was standard treatment plus some additional tests to determine specific genetic characteristics of Kateli's leukemia cells. Now we are considering whether or not to consent for her to take part in the latter part of the study, which is consolidation through maintenance. This portion of the study is done to compare the effects, of four different treatment plans or arms for ALL. One treatment plan is standard therapy, while the other three are experimental. The experimental treatment plans are more intensive and therefore could cause more side effects to the child than standard therapy, but also could reduce the risk of relapse which would improve on the 80% cure rate.

The chemo treatment for ALL moving forward is broken down into four phases--Consolidation (C), Interim Maintenance (IM), Delayed intensification (DI) and Maintenance (M). As mentioned, there are four ARMS to the study, in which the above phases are in combination of either standard or intensified/Augmented. The arms are as follows:

SS - Standard C, Standard IM, DI and M
SA - Standard C, Augmented/Intensified IM, DI and Standard M
IS - Intensified C, Standard IM, DI, and M
IA - Intensified C, IM, DI, and Standard M

You'll note that Maintenance is standard on all four arms. SS is standard therapy arm; which has a cure rate of 80%. SA, IS and IA are the three experimental arms. IA is the most intense of the three. Keep in mind that I'm just scratching the surface with the information that I'm presenting you with here. Dan and I have done a little more in depth reading and comparison between the arms of the study and we find ourselves in a tough predicament. It is our desire for Kateli to take part in the study, as she would be contributing to improving the treatment for children in the future. I mean, if it weren't for all of the children that have participated in studies like this over the years in the past, there would not be such a high cure rate for this illness and the prognosis would be nothing but sad. At the same time, our concern is to shelter Katherine from being exposed to too many of the chemo drugs. After all, each drug comes with a LONG list of side effects, both immediate and delayed. To think that there is a chance that our daughter's learning could be delayed, or that she could become infertile are tough things to deal with. It's even harder to consider the side effects of damage to her organs, a heart attack, stroke or blood clots--it's scary!! The catch to this study is that we can't pick and choose which arm of the study to participate in. Neither does the doctor. Once we sign the consent forms and agree, Katherine will be randomly placed into one of the four arms by a computer. Yes, to leave such a decision to a computer is mind boggling. So, I struggle with this! How does a computer know what treatment our daughter needs? What if it randomly places her in the IA (the most intense) arm? Is that too much?? Should we pull her from the study?? Would standard treatment be too little?? Does anyone have the answer? Does anyone know? Are we leaving this up to chance?? Do we go with what a computer tells us?? Some quiet time to think and to spend in prayer and I realize that Katherine's treatment plan is not up to me. It's not up to Dan. It's certainly not up to the computer in itself. There is a greater being behind all of this, Our Mighty Lord. He is the one in control here and we need to give it over to Him and not try to take it into our own hands. Because it is a sure thing that we will fail if don't put our complete trust in Him. I trust Him. I know that He is in control. I give Katherine over to him again and again each day and each night. And still, I'm a bit apprehensive. Is this me, not being a good christian? is this me, doubting our Almighty Father, who has vowed to keep us in His care and love us, and see us through it all. Who promises to not give us burdens we don't have the strength to face. Who says he will not leave us, but carry us through the time when we most need Him. Who am I, to doubt? Who am I in the grand scheme of His plan. So, I will trust. I will have faith that He will reveal his hand in this "random" drawing, and that it will be clear as day to us.

Aside from contemplating all the options, I'm sitting here enjoying some quiet time while Katherine naps this afternoon. I have no complaints. She's had a wonderful day. She's been so happy. She's been giggly, playful and silly. She's feeling great!! In fact, we've hardly been in the room. We've been up and about most of the morning and early afternoon. The playroom has been open, so we've spent some time in there playing and watching other kids play. This morning, I learned that Katherine is really good at playing memory. Granted, we played with only a few cards, and I changed the rules a bit for her, but she was having fun finding the matching pairs! We've also walked around the floor several times. We even took a stroll off the floor and got to ride in the elevator to the lobby to pick up lunch. Kateli was really excited to do that. On the way back up to the room, she climbed the steps from the lobby to the "B" floor and then we rode the elevator the rest of the way. Anyway, all of this to say that she's doing great today! She has not run fevers since Sunday afternoon--that's good. Her blood cultures have all come back negative--that is even better. And her blood counts look exceptional...

• Please pray for me today.
  

• Pray that I will trust completely in Him as Katherine is randomly placed in one of the four arms of the study.
  

• Pray that I will see God's hand in this process clearly, day in and day out.

• Pray for discernment for both Dan and I, as we move forward in this journey.

• Pray for strength and energy for our entire family.

• Pray that we would seek our Lord first and foremost in our daily life.

• Pray that Katherine would feel His presence in her heart; that she would call him Abba!

Back at Children's Hospital

Now that you've all been spoiled by Marleny's eloquent updates, tonight I get the honor of trying to live up to her high journalistic standards. I've been hearing from so many people that Marleny has such a way with words, I'm a little bit intimidated...

Kateli's fever returned today- her temperature was 102 F at 3:00pm, and up to 103.7 F at 4:45pm when she awoke from her nap. Aside from the temperature she is showing no other symptoms. On the contrary, she has been giggling and acting silly all day. At this point we don't really know the cause of the fever, so we are back at Children's Hospital proceeding with a standard protocol of general antibiotics. They are running cultures on her blood to determine the cause of the fevers and to tweak the antibiotics as necessary. We anticipate being here for around 3 days, since our doctor said they generally keep the kids for 24 to 48 hours after their fever breaks. As of 7:30PM her temperature is down to 99.9 F.

We will be enjoying our personal Easter sunrise service with a beautiful view of Downtown Tulsa. The hospital is situated on a hill, so from the 3rd floor we actually have a very nice view. We've been enjoying watching the helicopters arrive and land at the hospital. Kateli loves the whirly birds.

We are thinking of starting a movie rental business here at the hospital, since we threw all of the videos we've received into our hospital bag on the way out the door this evening. :) In all seriousness, thanks to everyone who has sent such thoughtful gifts over the last month- we've got a lot of comfort items to ease the burden of being away from home.

Prayer Requests:

• We will quickly discover the cause of Kateli's fever
• That Kateli's port will not become infected
• Patience for the parents of the patient
• That we may be a blessing to the Hospital staff over this Easter weekend and beyond.

Grace, peace, and mercy to all of you.

Love-

The Marshes.

Our first visit with CHUC

Catchy title, don't you think? Let me explain. At first glance, sounds like we visited someone, doesn't it?? Well, CHUC is actually an acronym. It stands for Children's Hospital Urgent Care, and yes, we had our first visit with Kateli there tonight.

Before I get into anything else, let me update on Wednesday's appt. It has been crazy, but fun at home this week, so I had not had much time to be on the computer. Our appt on Wednesday went very well. As planned, Kateli had a bone marrow aspiration; and she had two chemo drugs administered--one intravenous, and one intrathecal. Intrathecal means it was injected into her spinal fluid, so Kateli did have a spinal tap done as well. The procedure was fast, and Kateli woke quickly after she was taken off the "sleepy" medication. Dan and I walked back into the procedure room only to hear our little girl chatting away with the doctor and the nurse, as the doctor finished up and put band-aids at her poke sites. She's got three band-aids on her back and she refuses to let anyone touch them, or look at them for that matter. The doctor did have some information back on the genetic tests. I have to admit that I don't have ALL the details, as I was holding Kateli and she was not too happy while the doctor talked to us. I'll try to have Dan update with more details on the upcoming procedure. Basically, they have placed us into the "average" risk standard treatment. It's not absolutely certain if she will remain in this treatment, as there is the possibility that she could be in the "low" risk treatment, and I don't know that I fully understood what would determine that (again, I had a child screaming in my ear, while the dr talked). Consolidation/post induction, which is the second phase of the treatment starts next week. We did get a road map of the treatment schedule, but have not sat down to draw this out--Dan has been out of town all week, except for Wed morning. I'll try to post more when I have more information.

Going back to our visit to CHUC...As I mentioned in the previous post, Kateli went off the steroids on Tuesday morning and it has been so great. What a difference I've noted in our little girl. It has been a blessing to see our little girl gain back her energy and her strength back. Yesterday was so much fun for us, as Kateli spent most of the day just giggling and being funny and silly. Abuela Marlene is visiting and she has been so great with Kateli. Kateli is eating less. She's sleeping better and more. She wakes up in the morning giving me kisses and hugs--she's been sleeping in bed with me :) She is playing with her toys. She's walking around the house and not asking to be held all the time. Her eyes are beginning to show that spark again. We've been to the park the last two days and she's had fun walking around, and playing on the swings. This evening though, after getting back from the park she felt a little warm. We thought it might be because we had just come in from the sun, so we waited to take her temp. After dinner, while changing her diaper, she felt warm to me again so I took her temp. She measured 101.7!! Yep, you guessed it!! We quickly got on the phone with the doctor, who after asking a bunch of questions, advised us to take her to the Urgent Care clinic. So, we went. The port was accessed. Blood was drawn for blood cultures. The doctor came in and examined her. An antibiotic was infused. We watched "The Sound of Music" while we waited. The nurse came in to drawn new blood because apparently "they didn't know if they had mixed up the labels on her blood with another girl's in CHUC and they wanted to make sure" Yes, we rolled our eyes at that; were a bit disappointed, and have vowed to ask the nurses to do all the labeling while in the room with us, immediately after drawing blood. We waited some more, and then they released us. SO, we are home again. That's what our first visit to CHUC was. We are so glad that it was what it was, and nothing serious that required admittance to the hospital.

Specific Prayer requests:

• Please pray that Kateli's fever/temp doesn't spike about 102 tonight (or any other time, for that matter) because if it does, we will probably have to head back to the hospital.
• Please pray that the blood cultures that were done turn out to be clear
• Please pray that we can figure out the schedule for the next phase of treatment and get organized for that.
• Please give Praise to the Lord for Kateli's laughter and giggles that have seemed endless the last two days :)

Prayers, Prayers and more prayers

More than an update, this post is going to be a plea for prayer.

Tomorrow is Day 29 of Katherine's chemotherapy treatment. If I'm not mistaken, and I'll have Dan confirm this, tomorrow marks the end of the induction phase of the treatment. We've gone off the steroid she has been on for the past month, and are awaiting results from the genetic studies in order to know more about the treatment plan going forward.

Please pray for:

• That Katherine can be calm at the appt, and not get worked up from the moment her port is accessed.
• That results from the genetic studies have come back, and that we get positive news tomorrow. These results play a large role in determining the treatment plan for the consolidation/post induction period of treatment. Please pray that the doctor has had time to thoroughly review the results and prepare the most appropriate treatment plan for our little girl.
• Now that we are off the steroid, that Kateli's appetite will return to normality quickly. Also, that the extra weight she is carrying will come off easily, as it will relieve a lot of pain she has been experiencing the last few days. She has been complaining of back pain the last couple of days and has had a hard time sleeping. Please pray for comfort for her, and strength for her body.
• For energy for all of us. Sound sleep and restful nights.
• Yahir Alejandro. He is a 5 year old little guy, nephew of a friends, who was recently diagnosed with a brain tumor. He and his family are in Mexico.

I need to run, Kateli is up and needing some attention. Thank you for keeping up with us and for continued prayers.

Just plain and simple--I'm worn out

We get our days off to a wonderful start! I have to admit that it does take me a few minutes to fully wake up and get out of bed, but once I'm up, I'm feeling great. Renewed. Rested and ready to tackle the day. How could I not, when the things I wake up to are so wonderful!! There is sunshine peeking through the curtains. Kateli reaches over and gives me a great big hug, a kiss and says "dias mami" (good morning); a smiley baby about to be plopped down on my lap for his morning feeding; followed by a smile from my hubby and usually I get a good morning kiss (I think that depends on how bad my morning breath is :)! ). As if it's not enough to make my day, I always anticipate Kateli's great big smile and giggle when she first sees her little brother in the mornings. She says "mano, esperto!!" (brother is awake!) and reaches to grab his little hand once he's in bed with us--she plants a big kiss on his little tiny hand, and just gets the giggles!! We sit in bed for a little while, watch Veggie Tales "The Story that saved Christmas" or "smas" as Kateli calls it--all the while Kateli is snacking on something, and Joshua is nursing. And then we finally make it out of bed....

The rest of the day goes something like this....
* meds for Kateli
* Juice some fruit for the kids
* Fix Kateli's real breakfast, which ranges from "rroz and chicha" (rice & sausage) to "agna" (lasagna) to sometimes even "pancakes"
* Make myself something quick to eat
* mix cereal for Joshua
* we all eat together after saying a quick prayer
* Clean up dishes
* Joshua takes a nap, while Kateli and I Play (about 9:30am)
* Kateli asks for a snack
* Joshua wakes up (about 10:30am)
* Kateli asks for another snack (cheese in a bag)
* Kateli takes a morning nap, Joshua and I play (about 11:00am)
* Kateli wakes up (about 11:45 or noon)
* figure out what we are going to eat for lunch, Kateli usually wakes up hungry
* Fix lunch and we all eat (about 12:30P)
* Pop in a movie and sit on the couch for a little while; Joshua plays
* Kateli asks for another snack (this time "arroz" or rice in a bowl or ham)
* Kateli asks for more arroz--I persuade her to eat apple or some type of fruit
* Joshua goes down for afternoon nap (about 1:00p)
* Try to do something constructive with Kateli, color, read, look at books, go in the backyard etc etc
* Kateli wants to watch more TV and asks for yet another snack (about 2:00pm)
* Kateli goes down for an afternoon nap (about 2:30pm)
* I GET SOME QUITE TIME TO MYSELF!!!!! YAHOO!!!
* Kateli wakes up, asking for yet another snack (3:30 or 3:45pm)

oh, I can't even do this anymore!! List what the rest of the day looks like because it would all just reasd "kateli asks for another snack" "kateli wants another snack"...and so on and so on!! By this time, I'm so worn out...I''m so ready for Dan to be home. I'm tired of the constant trips to the fridge to get snacks. I'm tired of watching my poor little girl just be starving all the time. I believe her requests for food are legitimate, and so I oblige. At the same time, I've seen my poor baby go from her petite frame, high energy, playful, and smiley self to a child that just does not look very comfy in her own skin--don't get me wrong, the smiles have not faded from her sweet little face and her spirits are still high!! She's constantly doing something or saying something that makes me tickle!! But she's put on a few pounds that make it a little difficult for her to want to do much more than sit on the couch and watch TV, or sit on mommy's or daddy's lap, or be carried around all the time. Before all this even started, bedtime was always a fun time for us. She'd give me smooches and head upstairs with daddy behind her. She'd climb the stairs, and at each step she's yell over at me "night night mami" before she treaded to the next step. She'd hurry up the 15 steps to go take a bath, the entire time smiling from ear to ear. Last night, heading upstairs to bed was a little different. She started out climbing the stairs, took the first step, got up to the second step and turned to me and said "pesa, mami. Hold" (translates to "heavy, mommy, hold") extending her arms towards me. I got teary eyed, as I picked up my little girl and hugged her as tight as I could--letting her know how much I love her! She says "no bath, Kateli" and she doesn't even want to change into PJs. We still read books and sing "me so" and she goes to bed just fine. But the enthusiasm for her baths and bedtime is just not there--she's so worn out by the end of the day.

Her hair is starting to thin out and that makes me so sad. Strand by strand it's falling out. Katherine's hair is already fine and she doesn't have that much, that I'm sure soon it will all be gone. So, I ask myself why does that make me so sad?? I know that it's going to grow back, after all it's just hair, right? The simple answer is, yes. But I don't think it's the actual hair loss that makes me sad. It's the reason why she is losing it. It's an intense treatment, and hair loss is just one side effect of, I'm sure more than one of the drugs she is getting. Chemotherapy is serious, but so is Leukemia. So, we'll take the hair loss, and trust that while the drugs are harsh, they will do their job and rid her body completely of this disease. After all, hair or no hair, Kateli will continue to shine through this whole ordeal. We'll get used to it. And she'll look beautiful with her little bald head. The positive is that spring and summer are around the corner, no hair means wearing hats outdoors, but it also means being a little cooler!

A little update on yesterday's appt with the doctor. There was no scheduled bone marrow check, so we just went in to get her chemo shot. Of course, nothing goes quite as planned and we ended up in the clinic much longer than I anticipated. Turns out that drawing blood for labs yesterday was a bit more laborious than usual. The nurse accessed Kateli's port (that's what they call it when they poke her to insert the needle in her port), and began to draw blood--well, nothing was coming out!! So, she said that a lot of times what happens is that hemoglobin will accumulate at the port entrance ( I guess) and so they have to administer a medicine losen it up. Of course the med was not on hand, and so they had to order it. When it finally arrived, the nurse attached it to Kateli's port and it had to sit there for about 30 mins or so, before she was able to draw blood. Finally the nurse was able to get blood drawn for labs, and then we had to wait for the numbers to come back before they would administer the chemo shot. So, we waited. Patiently we waited. Luckily, since there was no marrow to be drawn, Kateli was able to eat breakfast. I did pack a bag of cheerios, though, just in case. Guess what?? we went through the bag and were still sitting in the waiting room. Of course the satiation from the cheerios only lasted a little while, and we didn't get out of there without Kateli asking for "ham and cheese"....:) So, we did meet with the doctor. I asked a few questions, got some answers and the rest are pending until we get back genetic test results. The good news...Kateli goes off the steroids next week!! Her last dose is on Tuesday morning, and then we are off!! For those of you wondering...yes, this means that her normal appetite will return and we WON'T be eating ALL THE TIME!! The doctor said that next week he should have back the genetic test results and planned out Kateli's treatment for the next 4 to 6 months, the consolidation or post-induction part of the overall treatment.

SPECIFIC PRAYER REQUESTS:

• Please pray for energy and stamina for me to keep up with Kateli's food requests; as well as getting her to eat fruits and veggies. She still has a week on the steroids, and I was informed by the doctor and the nurse this wednesday that it's only going to get worse before it gets better--the eating that is!!
• Please pray that the genetic test results do come back by next appointment and that the doctor has time to thoroughly go through the information to come up with the best consolidation/post-induction treatment that kateli will follow for the next few months.
• Please pray that the genetic test results come back with good news--apparently the genetics of the leukemia cells play a huge role into it's curability and chance of relapses.
• PRAISE!! Kateli's blood count numbers are up!! Please do pray that they continue to stay high, or out of critical ranges!

Once again, thank you for reading our blog and most importantly for your continued prayers for our family!

Leaving comments...

How God loves us!! How God loves our daughter. He loves us more than we can begin to imagine. Our Lord and Savior loves our little girl even more than we, as parents, do! That's hard to imagine!! Yet, He does. Our trust is in Him. Our faith lies in Him. Each morning, I pray to be able to leave my fears, my anxieties and my worries at the foot of the Cross. How awesome it is to know that our family in Christ is great, and praying for us and our little girl fervently. I know that when I don't have the words to speak, or the energy to say much to God, others are speaking those words to Him for me! I'm encouraged to know that we are surrounded by so many people that care for us. That are lifting us up in prayer. That are genuinely interested in how our daughter is doing, and how her treatment is progressing. That are constantly asking or wondering how, specifically, they can pray for us and for Katherine. I realized tonight, that the settings on our blog were not making it easy for some to leave the comments they desired to leave. I've changed a setting, and it is now open for anyone to leave comments on our blog. To do this:

• click on the "# comments" link at the end of the post, this will cause for a new window to pop up on your screen.
• type your comment in the field provided.
• you will need to type in the word verification in order to post the comment
• In Choose an Identity, select Google/Blogger if you have a google account. Otherwise, select either the "Name/URL" or Anonymous. If you select Name/URL, the URL field may be left blank.

Please know that the comments left on our blog are meaningful to us, as we are encouraged by the love and support that they portray.

More sophisticated tastes...

When they told me Kateli's tastes would change, I never, in a million years would have imagined how much on the fly cooking that would entail. I think the only thing she asks for, that is ready out of the fridge, is ham and cheese. Everything else requires some prep work and cook time. Those two factors DO NOT, let me repeat DO NOT help when you have a 2 year old demanding food right NOW!! Okay, eggs are easy and fast. Sausage doesn't take too long to heat up and serve. Mashed potatoes--well, I'm getting to be a pro at those and cutting the cooking time in half. But when she looks at me and says, "mommy, sopa brocoli?", or "mommy, agna?" what am I to do, but oblige to her requests.

"mommy, sopa brocoli"--Yes, this weekend she decided she wanted to eat broccoli cheese soup, and although it takes a little while to make, I certainly was not going to pass up the opportunity to add broccoli and carrots to her diet--so I loaded the soup with these yummy veggies. I made a large quantity to store in the fridge for a later request, and guess what? she asked for it again and again. We've only got a little bit left in the fridge!! She got loads of Vitamin A, Vitamin C and Potassium just in that soup alone!


"mommy, agna"--this morning, our dear daughter woke up asking for food. Her first request was a bowl of goldfish, and a glass of milk. Daddy filled her order and she ate in bed. I was still sleeping. Once she was done with her goldfish and milk, she turned to me and said "mommy, agna...arne?" Took me a minute to figure it out, and then it hit me. She was saying, "mommy, I want meat lasagna" Can you believe it?? Lasagna request from a 2 year old!! At 8 o'clock in the morning!! She didn't want anything but the lasagna too, I tried to distract her and offer her other options. So, what did I have to do?? At 8:30 this morning, I was prepping a lasagna. Luckily, tia Mariafer had sent me the recipe to a quick and easy lasagna--because I don't think Kateli would have lasted had I made my mom's recipe (just the meat sauce would have taken all morning to make). Again, I took advantage of the fact that if she was going to eat this dish, I might as well make it as healthy as lasagna could be, so...I used wheat lasagna noodles, organic sauce, ground turkey instead of beef, and low fat cottage and ricotta cheese. And so, at 10:30 this morning, Kateli was indulging in a slice of yummy lasagna, and was so happy!!

Why can't she just crave, crackers and cheese?? Can't be that easy, I guess. The good thing is that she's asking for "healthy foods", I'd be kinda worried if all she asked for was cookies, ice cream and candy. She's giving me the opportunities to be creative and hone my cooking skills!

Marrow is CLEAR!!!!

Need I say more?? Of course, how could I not!!! PRAISE THE LORD!!!

The doctor called this morning to let us know that the bone marrow samples, taken on Wed this week, were 99.9% clear!!! Hallelujah!! He has categorized her as an "early responder" and although he was not real specific as to what that meant for the treatment going forward, our hope is that the next 4 to 6 months of treatment are not too aggressive.

Thank you so much for your prayers! God is good! Today is a beautiful day. The news has made the sun shine brighter in our home and in our heart!

Still waiting...

I know that many of our blog readers are awaiting patiently for me to update with the news that we receive from the doctor regarding yesterday's bone marrow check. I'm sad to say that we, too, are still waiting to hear anything. The doctor has yet to call back. They say, no news is good news. Let's continue to pray that we get a good report on Kateli's bone marrow check that was done yesterday morning.

Thank you for your continued prayers and support.

15 day check

Hard to believe that we are already 15 days into this chemotherapy treatment for Kateli. So far, so good. Katherine is doing wonderful, as wonderful as can be expected with this type of treatment anyway. Her personality has changed a little bit, she's a bit grumpy throughout the day, real needy and VERY hungry ALL the time! All of these things are expected to go away, once we stop the steroid that she is on during this first month of induction. It's not easy to see our child act so NOT herself lately. Most of the time it's a bit disheartening, but there are those other times that she manages to make us laugh. As I've mentioned before, he vocabulary is tremendous and she seems to add new words (both spanish and english) everyday; so some of her requests and sayings lately are hilarious. Let me tell you a funny story that happened this morning...

As we were rushing to get ready for this morning's appointment, Kateli of course was grouchy-- because she couldn't eat or drink until after the procedure--and said the funniest thing to me. I had just gotten out of the shower, and was picking out my clothes for the day. I pulled out a blue sweater; slipped that on. I pulled off a long blue skirt from a hanger, grabbed my boots; and walked over to the bed to finish getting ready when I hear Kateli saying "no mami, no mami". I looked up and saw that she was pointing at the skirt. I didn't understand what she meant, so I proceeded to continue getting dressed--all the while, still hearing "no mami, no mami." The "no mami", quickly became "no, mami. Off!"; her little finger stretched out and waving "no" at my skirt! I finally understood what she was saying. She was telling me NOT to wear that skirt!! I think if she had the vocab, she would have probably said something like "mami, what are you thinking? that's ugly, please don't wear it!" I was so tickled, I couldn't do anything but laugh!! I didn't change, and she stopped complaining!! But it was hilarious to hear my two year old have an opinion on my attire!! If you are not laughing, I guess you had to be there to appreciate the story....:) Then, we went upstairs to pick out her clothes! Guess, what?? She had an opinion on that as well. I dressed her in some tights, a cute pair of dressy shorts, a white waffle long sleeve shirt, and a shawl over that. She was going to be wearing her cute pink boots that Aunt Monica gave to her. Well, the whole time we are coming down the stairs she was crying and complaining that she wanted the shawl off--daddy complied and she ended up wearing just a coat. Funny yet? After that, when we were about to leave, I noticed her hair was a mess. So, I picked her up and said "can mami fix your hair?" She nodded in agreement, and we went into the bathroom. I wet her hair and brushed it down. She looked at me and said "no, mami. no wet hair." She then proceeded to say "shhhh, shhhhh, -cadora" and motion circles around her head!! I quickly caught on to that one! She was saying "secadora"--spanish for hair dryer! She wanted me to blow dry her hair, because she didn't want it wet!! Is she a girl or what? I had quite the laugh this morning!! I think the steroids are giving her that little "umph" to be a bit bolder and communicate more openly what she likes, dislikes, wants and doesn't want.

Okay, so back to serious business--this morning's appointment at the clinic. Have you ever tried keeping a 2 year old, on steroids, from eating all morning long?? If you haven't, I hope you never have to!! If you have, well, you can empathize with us!! It was horrible. She was starving, and we couldn't do anything to make it better!! The first thing they do when we get to clinic is insert the needle into the port and draw blood for labs. The needle stays in until after the procedure, when we are ready to head home. This week, same as last, Kateli had a hard time after the needle was in place. She just sat in our lap and looked so sad. She watched from far, the other kids playing around her. She had no desire to jump off my lap and go play with anything. She didn't want anything to do with the nurses, or the doctor. This morning she even took a little nap on daddy's shoulder. Her arm was drawn up to her chest, and she would not move it. They keep telling us that it's going to get better. That she'll get used to it. That she'll eventually come into the clinic, will not shed a tear, and will play in the playroom as if she were at home!! I keep asking myself, "when? When is it going to get better for her? When will she not dread the poke? When will she be okay in the playroom? When is she going to be okay with the entourage of people in the room as they prepare to do the procedure? When will she not burst into tears as someone nears her port or her arm to connect an IV or medication?" I don't know. I'm not saying that it's easy for us as parents either. It's still hard to see her go through all this, but we are handling it better with each visit.

She had good numbers on her blood work this morning. Her white counts is still a bit low, but not much different than it has been in past labs. Her ANC (absolute neutrophil count) was at 700 today. Neutrophils make up about 50-70% of the circulating white blood cells, and serve to fight off infections by destroying bacteria in the blood. Last week, Katherine's ANC was 900. This week she's a bit lower, but she's still okay. If her ANC count falls below 500, she is said to be neutropenic. Neutropenic means that she would be more susceptible to bacterial infections and without prompt medical attention, the condition could become life-threatening. So, if she ever becomes neutropenic we need to be over cautious in terms of keeping her alienated and healthy. As it is, I think we are being very cautious with exposing her to anyone that has been sick, or is sick. It's pretty scary stuff, when they tell you that if your kid runs a temp of 101.5 F, she will most likely need to be admitted to the hospital, put on antibiotics and have a 2 day stay.

The procedure itself was very quick this morning. The doctor was in and out of her room in a matter of about 15 mins. He said everything looked well. He took bone marrow samples from both the right and left side on her back, to make sure that he had captured a good sample to look at and examine. We don't know when the doctor will call back and let us know the results, but I'll update as soon as we hear anything. In the meantime, please continue to pray:

* That she's responding quickly to the treatment, and her bone marrow from this morning is clear of cancer cells.

* That this gets easier on her. I mean that the visits to the doctor become less traumatic for our little girl.

* That she doesn't have any pain from the two pokes she got in her back today.

* Kateli's been fighting off a yeast infection in her diaper area. Please pray that this clears up quickly. We've been applying medication, but the doctor this morning said that it could take a little while to clear up since her numbers (blood counts) are not that of a normal 2 year old.

* That her energy and body strength is renewed each day. She's been a little worn out lately, and she asks to take naps during the day. This is not like her, but I know that it will get better. SO pray for strength and energy for her, but also strength for me (us) to watch her go through this process.

* That the weather continues to be so beautiful as it makes our days much brighter. Please also pray that it warms up so that we can go for walks and enjoy some fresh air.

As always thank you for reading our blog and for keeping us in your prayers.

Can I just ramble?

It's 9:15 am Monday morning and I'm home with the kids. Dan left to work about an hour ago. We had a pretty good thunderstorm last night; I'm almost certain it rained all night long. I hope the gray sky outside doesn't dictate the mood of our day. I don't want today to be gloomy or gray for me and the kids. I'd much rather have a happy and fun day with them. So far it's been a quite morning. Kateli woke up at 7:15am. Joshua started talking shortly thereafter. I pumped (for Joshua's breakfast cereal, while Kateli sat in our bed eating papas! Would you believe the girl woke up at 2:30am screaming for "ham and cheese" and "agua"? Yep, believe it!! Let's just hope it's not a new mealtime that she's added to her days! :) We were up for nearly an hour. My plan was to make it to a 5:30am class at the gym this morning, but at 3:30am, when I was going back to sleep, I knew it was not going to happen.


So, now it's 9:40pm and the day is pretty much gone. Dan and I are both sitting, each on a couch, with our personal laptops. He's looking for a car, and getting caught up on the latest news. I sit here, trying to put my thoughts into words. You'll have to forgive me if this entry is super long and just a bunch of rambling, but I did warn you with the title. I feel like I've got so much to say, and not the words to express it all. I guess I'm feeling a bit overwhelmed. Not that our situation merits the feeling, or anything...I mean, why should we feel overwhelmed. We've only found out 18 days ago that our little girl has cancer and will have to endure the treatment to fight this fight! What's there to be overwhelmed about?? Well, there is a lot...

This weekend was hard. Emotionally hard for me. I didn't wake up feeling sad. I woke up with a mental list of things that I needed to get done, like go to the gym, clean the house, do laundry, etc etc. Most of those things did get done, but walking out into a beautiful day after the gym, I was so excited that we shouldn't let the day go by without taking the kids to the park. A dear friend called, and gave us more motivation to go to the park; they were going to meet us there. Zachary is one of Kateli's little friends and she's always excited to see him and "Zachie's mommy" as she calls Jacquelyn :). So, off we went to the park. Two kids in tow, my camera, the diaper bag, sunscreen, water and we couldn't forget snacks for Katherine. We had fun, while we were at the park. And then it happened. It hit me that Katherine is not the same 2 year old that she was 3 weeks ago! She's not like Zachary. She's doesn't have the energy of a normal 2 year old right now. She was worn out and it wasn't just because she had only had a short afternoon nap. Saturday, for the first time, I saw my little girl so tired and worn out that she was asking to go "home"! She fell asleep almost as soon as we got home and we had to wake her up to give her the meds before bedtime.

Yes, Katherine is special. We are a family in a special place right now. Circumstances that make it hard to find reasons to be thankful. A situation that puts us in a place where it's so easy to just feel sorry for ourselves. I've done it. I've asked the infamous, never ending "WHY?" questions..."why us?", "why our little girl?" "why does she have to endure such harsh treatment as chemotherapy?" "Why, Lord, are you using our precious child in this way?" But at the end of the day, after I've shed my tears I'm still void of answers. I simply don't know. And then I remember that we are not alone in this journey. We have a Mighty God, our Abba, and we call on Him. We call on Him to renew our strength and energy each day. We call on Him to renew our faith and trust in His work. We call on Him to protect our child, and to walk with us each day. We call on Him to carry us through the difficult days. We call on Him because we know that He loves us; because He loves our child more than we ever could. And we persevere. We march on, and fight this fight because it is worth fighting. My little girl needs me to be strong for her. I can't be strong alone. I need to surrender and fall to my knees each morning and each moment of the day when I'm feel weak.

The support that we have received from our family and friends has been tremendous. We feel blessed to be surrounded by people that care for us and that are fervently praying for our family. Thank you for your prayers. Thank you for reading our blog and for walking alongside us. I find encouragement in the comments that are so kindly left on our website.