9/30/13 Low to Standard Risk and so much more!

 

Today started with Kallia being so excited to give Gideon his BYU slippers she had bought for him.

 

Then we got ready and went to Primary's for chemo and CBC's.  Because she has been eating so much we took extra food like a big bowl of spaghetti casserole just in case.  She had already eaten lots of breakfast and taken her medicines. We arrived on time at 9:00 am.  She was in a very good mood and was chatting and talking with the nurses and her fellow oncologist.  They were amazed at what a good mood she was in considering her steroids.  And then...in the blink of an eye....she was hungry for macaroni and cheese. The Child Life Specialist knew where some was and cooked it for her and brought it in.  And.....it was too lumpy.  She threw it.  She threw her coat and her shoes.  She started screaming and then her attending oncologist came in.  Dr. Afifi tried to tell me that she had been moved from low risk to standard risk which meant she should be having a bone marrow aspirate and chemo today.  But Kallia wasn't fasting so we would have to come back tomorrow to have it done.  But we couldn't hear her because Kallia was screaming, throwing things, ripping of her arm bandages, trying to pull out my earrings, shredding the paper on the exam table, throwing markers, the list goes on.  Dr. Afifi said it might be time for valium.  Here's Kallia beyond angry.

 

 Here is the room after the Drs left.

 

And then it was over. She sat down in a chair and stopped.  After a few minutes she looked at me and said, "I got really mad didn't I?"

Um....yes?

And then in the blink of an eye she was happy again and showing me her bandage she had ripped off.

These steroids really change their mood.  And EVERYTHING revolves around food.

 

So one reason why she was moved from low to standard risk is because of a genetic marker test that came back this week.  Technology is so amazing that they can locate genes in your DNA that give them a helpful idea about how easy or hard it will be to kill the Leukemia. In a very tiny nutshell there were 4 markers they evaluate.  One marker is VERY good to have. One is VERY bad to have and two are pretty helpful.  Kallia does not have the bad marker but she also does not have the really good one.  But she does have the other two.  This does not change her prognosis only her treatment plan slightly at this point. That is why she has to have a bone marrow aspirate this week.  It is to "check" on the leukemia.  Low risk would have had this "check."

 

Once we were done in the clinic she was focused on mashed potatoes and gravy.  She HAD to have some.  We went over to the U medical center cafeteria.  I wish I had the video of when we actually walked into the cafeteria and she looked like it was her birthday with all the food!

 

Finally some mashed potatoes!

 

 

Kallia wanted to try a bite of my pita bread.  It's a starchy, high carb, white food so of course she did.  She's like a honing pigeon for that stuff.  So she eat some and thought for a minute and said, "It tastes like the air at Home Depot."  Sorry Home Depot.  I bet you didn't know you smell like a chewed up pita bread.

When we arrived home she wanted to wash her bunny tea set her grandma from Texas sent her.

She didn't have too many more meltdowns today but she stayed busy eating.  My visiting teacher made homemade tortillas for her and she LOVED them.

 

The last funny of the day was when she turned and said to me.  "Mom if I ever get so fat that I can't get out of bed anymore, can you buy me an Easy Bake oven so I can keep eating in my room?" Wow.  She's got herself covered!

 

CBC's

WBC 2.2     RBC 3.72    HGB 10.2   HCT 30.5    PLT  152    ANC  900

Weight:  53 lbs

 

9/26/13 Trying to Go to School...

This morning Kallia woke up in a very good mood.  She got dressed, eat breakfast, took her medicines without too much complaint, brushed her hair, and said, "I'm ready to go to school today."

 

How sad.  Because she can't go to school!  She was pretty upset when I told her this.  But we decided if she was still feeling good after her nurses came maybe she could go to the store to buy Liberty a birthday present.

 

She had a really hard time with the nurses.  It hurts to get the dressing changed on a pic line.  She screamed and cried.

 

After the nurse visit and lunch she was desperate to go to the store and buy Gideon and Liberty birthday presents.  Gideon's birthday is Monday and Liberty's is Tuesday.  Some friends in Steve's MBA class gave her some money to spend and she really wanted to buy her siblings some presents!

 

So after telling her the only way she could leave the house and go to a store was with a mask and gloves, we left.

 

This was Kallia's first day out since this whole thing started! She was SOOO happy to leave the house. She didn't even mind wearing the mask and gloves!

 

She had such a delightful time at Target.  I realized that this was the first time I have seen her be her true self in months.  I figured out that the last I could remember her acting so lively and happy was when we went to Lagoon the first part of July.  Even on our trip to Texas she was in and out of happiness. 

 

She spent so much time looking over presents for her siblings' birthdays.  She wanted to get just the right things to make them happy.

 

Of course when we were done shopping all she could think about was food so we stopped for popcorn on the way out.

9/25/13 Side Effects :(

Wednesday

Today was the first big side effects day. Even though Kallia has been craving garlic bread since she got home, today was the day it caught up with her. Kallia wants to eat all day long. For breakfast she had a bowl of cereal, 3 pieces of garlic bread, 2 bowls cheesy noodle casserole, and juice. Yah I know. Carbs, carbs, carbs! She sounds like The Very Hungry Caterpillar.  And that was all eaten by 11:00 am. 

We had a little lesson on side effects and the medicines making her think she's hungry but she's actually full. She completely understood and the asked for lots more food. By afternoon her whole front belly/stomach was huge and hard and painful. But her poor brain kept telling her to eat more. After a few days of eating all day long it has finally caught up with her and she has barely been able to walk since lunch time. Eh he can't stand up straight because her stomach is in so much pain. And not just after-thanksgiving-full.

Poor girl. Unfortunately this is just the beginning. 

9/24/13 The Day After LP

What a day! Kallia was in pain from her LP all day. And it took her over 3 hours to take all of her medicines this morning. My goodness she hates to take medicines. They are all liquids. She had 6 to take this morning. I guess that averages one every 30 minutes? We try everything and in the end no amount of tricks, bribing, rewards, etc will do. Sometimes she just has to be held down and they are squeezed into her mouth and she just has to swallow. It's sad. And emotionally draining.  I think both Steve and I are at the end of trying to be patient. We need a new strategy to be prepared for the evening medicines.

We didn't give her her big pain meds today because they make her hyper and awake. Just Tylenol because she is tired and needs to sleep. But boy has it made her grumpy and angry and miserable. This was one of the most difficult days yet as far as her being angry and unhappy about it all.

She said "This is my body not theirs and they are destroying me!" Well, actually they are destroying it but in a good way! That's hard to explain to a 6 year old.

So bedtime meds were much better. Steve was more firm with her about having to force them down her and she took them all in 15 mins. It sounds harsh but what do you do when your child literally has to take them or they die?

She was asleep by 8:00 thankfully. She was so exhausted. It wears a kid out to fight to not take your medicines all day long!!!

Her foods of choice today were bowls of taco soup for breakfast, lunch, and snack! And she hasn't stopped eating garlic bread since she got home! She eats a loaf of garlic bread a day! We are  told that's the meds doing that.  Our whole house smells like garlic! I guess she's preparing for Halloween. No vampires here!!

9/23/13 Lumbar Puncture and more chemo

Kallia is doing so good. She has a lumbar puncture today to check spinal fluid for leukemia and insert more chemo. Then she has blood tests and more chemo after her LP. 

*later

Her spinal fluid came back clean. Her blood counts are improving! We are hoping for the best. 

However just being back at the hospital made her regress emotionally. A few minutes after we got there she quit talking and wouldn't respond to anyone.  It's so sad to see her go from mostly happy to baby-like and so scared.  She was very afraid she would have to be admitted again. Luckily she didn't have to be.

In the clinic they flushed her pic line but it wouldn't draw blood. They had to flush it several times and then it finally worked. That scared her but it all worked out. We waited while she got her chemo treatments which was surprisingly fast. We met her new doctor, Dr. Efifi. She is from Egypt.

She was pretty sore on the way home but has been in good spirits since we left the hospital.

By evening  time she was in lots of pain. She took her pain meds but they make her hyper and alert so she didn't fall asleep until midnight!!!! 

Someone brought us taco Soup and even though we had some the day before, everybody loved it. Especially Kallia!

Long day!

9/17/13 Day 5 at Primary's: Lots of Friends, Lots of Meds, Lots of Tears

Today started out with Kallia having some fun visitors from her church Primary.

They brought some really fun toys and a giant poster made by all the kids at our church.  There were also letters and cards from the kids.  Visitors really brighten Kallia's day!!

Next came the EKG. Thankfully her heart is in good shape.

Then Kallia had a visit from a good family friend Carissa Robinson.  She brought some fun things for Kallia to do while sitting around!

Next was poking for the parents!  The research team came in and took Steve and I's blood for genetic research.  If they find out which of us is a carrier they will notify us and probably one of us will be fired from being a parent!!!

 First dad went!

 Then mom! Mom was for sure she would pass out but if her 6 year old daughter can do it over and over then I guess she can too!!!!!

After poking it was time to try and get Kallia to eat something. Luckily Chick-fil-a came to the rescue and she actually ate some chicken nuggets! But who can resist Chick-fil-a???

Our social worker came and talked to us for a while about the ins and outs of the hospital, bills, expectations of children with life-threatening diseases.  Happy, happy, happy.  :)

Samantha and Talon Walker also came to visit. And Liberty was lucky enough to miss school and spend the day with her sister.

If anyone thinks we get to sit around and read books think again!!!  After Liberty left with Steve, Alaina and her cousins came to visit. The 3 girls had lots of fun playing, drawing, and having a rainbow cupcake party!

And that was the end of visitors! Whew.  Next came the hard part.  Taking medicines.  For an hour and a half Kallia cried, screamed, squirted, and threw medicine.  In the end, all 3 syringes of meds went down her throat.  So did mom's ability to hold back the tears.  3 times a day at this isn't going to be fun.  Kallia has something I call highly-sensitive-over-active-mouth-and-nose-sensory-make-me-gag-on-anything-nasty-I-smell-and-taste syndrome.  She has 3, yes 3, Glade/Febreeze/Wallflower scents in her bathroom here and she still gags when she uses the bathroom.  And it's only getting worse with these drugs! Oh boy!

And the doctors all tell us the steroids she has to be on make kids overly moody and grumpy.  Really? Because I thought she was already like that!

And while ALL of this was going on at the hospital......a swarm of worker bees from our church descended upon our back yard and cleaned it up.  Steve's back has had a bulging disc since January and has made it very difficult for him to keep up his garden and fruit trees like he usually does. But our amazing neighborhood came to the rescue.  It's hard not to feel overwhelming gratitude when someone texts you pictures like these!!!

I mean really!!!! Who does this but the MOST amazing people in the world???? We love you all!!!

But the biggest joy of the day is that this is the FIRST day in 4 weeks that Kallia has not had a fever of 102!  That means some kind of cancer is being kicked in there!!!!!

Go Kallia! We love you!!!

Car Ride Up

This is where I get to write my own personal thoughts.  On my way up to Primary's this morning (it was my turn to sleep at home last night) I was pondering A LOT of things.  There is a movie our family likes to watch called 17 Miracles. At the end of the movie an older lady talks about the hardships of the journey traveling west and says "It will all be worth it if my children believe." Something like that. Anyway, I had such an overwhelming feeling of the same kind only it was more like this. 

This will all be worth it if my children gain a great love of service to others and from others. If they become more empathetic and loving to others. If they gain a testimony of how many miracles the Lord blesses us with each day and how much He LOVES US!  It will ALL be worth it if my children's testimony of Christ strengthens and grows into something powerful and deep and full of faith in Him.  Then it will all be worth it.

Soup Tantrums

Last night Kallia refused to eat anything.  She wasn't going to be allowed food after 11:00 pm and we told her that but she still refused to eat.  All she wanted was mom's potato soup.  Well the kitchen was closed by the time we figured this out so I tried to make something similar but it didn't go well.  So this morning when she was hungry and wanting food we told her she could eat after her lumbar puncture.  She said all she wanted was mom's potato soup.  So while she was having her procedure I was busy ordering ingredients from the kitchen to try and make it in the microwave. I guess most of us are grumpy after anesthesia! After waking up from anesthesia she was grumpy but hungry.  I had this soup waiting for her. So after scrambling for a few ingredients this is what I came up with!!! (Sariah)

 

Well it looks yummy right?  And she got a big smile when she saw it! And took one bite of it and said no thanks!  Well she didn't really say "no thank you" it was something more like "blah yuck!"  I'm told this is only the beginning of mood swings and pickiness. :) 

9/16/13 Day 4 at Primary's: Lumbar Puncture and First Rounds of Chemo

Today Kallia was scheduled for a lumbar puncture and first round of chemo into her spinal column.  but first she got to make her achievement bead necklace.

For everything she gets done she gets a bead. She has earned beads for bone marrow biopsy, bone marrow aspirate,
 

Kallia just went in for a lumbar puncture. They will first extract some spinal fluid to check for Leukemia in the spinal column and brain. Then they will inject her first round of chemo. Go Kallia!!!

9/15/13 Day 3 at Primary's: PIC Line

9/14/13 Day 2 at Primary's