Fever Week

Ania has been in the hospital for 5 days. Unexplained fevers the culprit. Fevers almost to 104 degrees at times. Touching the forehead of a person with a fever that high is really scary. Heat radiates off skin before you even really touch.  

Before all of this mess with fevers occurred, we had a beautiful few days out of the hospital after her 3rd chemo treatment. Thank goodness! The fresh air had to do some good for her before all the unexpected hospital time. 

Proudly working on a new plot of garden the weekend before.

We even got a nature hike in between chemotherapy and the fever onset.

Shhhh deer!

Little explorers ! 

The next morning, Tuesday, Ania crawled into bed with us and I felt the heat radiating. She had a check up anyways that morning but her labs came back fine so we were able to go home. I had a feeling it might go bad eventually because she was sleeping all day. In the afternoon the fever got up to 103.7 so we were told to come back to be admitted. 

Back in the hospital, several tests were run. Most test results come back within 24-48 hours so I knew it would be at least a night or two. 

Lots of snuggle time ( silly time) 

She got to play with the little friend she has seen now a few times at treatments named Makayla. She is a fellow warrior and Ania picked out a pair of purple wings to bring to her at her next hospital stay. We did not anticipate a visit so soon but it was nice to see her sweet friend again! 

Magical Butterfly wings have the power to bring joy no matter the setting, no matter the illness! Ania was so happy to see they had the same effect on Makayla as they do her! 

She rested a lot as we were confined to her room due to isolation that started Thursday while the medical team was trying to figure out what was causing the fevers. She had a blood transfusion as well on Thursday because her counts were low. They hoped transfusion would help give her a boost and fight off whatever was causing the illness. 

To stay occupied during the isolation, I knitted a butterfly pattern cloth. Knitting has become my favorite hospital past time. It's good to focus on something constructive and creative in the drawn out waiting time! Ania likes to watch me do it too. 

Ania had a few late night painting sessions since her sleep schedule was a little wacky. She thought it was pretty fun to be painting at 10:30 at night! Her window of activities was small as the fevers would come and go every 3-4 hours so if she wanted to paint late night, so be it!

Working on her fox :)

She also worked on her tattoo drawing skills! She's very good at drawing "garden life" tattoos on herself! 

Naptime after tattoo time

And baking cupcakes in bed?! That was super fun too! 

She had a couple visitors over the last 5 days. Of course daddy and Kellen came by regularly. She really enjoyed seeing her boys! 

Sibling snuggles :) 

A visit from Chicago Bear football player Charles "Peanut" Tillman

This picture just cracks me up. She was not upset about him at all - although she thought he was a baseball player. Two minutes before his arrival she had asked me to go to the playroom and I had to tell her the heartbreaking news that she couldn't leave her room. So she was in the middle of a meltdown when the charitable Bear tried to give her a little visit. He is very nice and a very good sport! She and I had a great laugh over this picture awhile later :) AND we got a signed football to give to daddy for Father's Day!

A visit from Olaf of Frozen ( in giant balloon form) cheered her up instantly! 

Madame Butterfly

It was not until Friday night that some test results came back with a conclusive reason for her fevers. She had Rhinovirus- aka the common cold. She had no cold symptoms at all- other than the pesky scary high fevers. Her last fever was at 3:00pm Friday. Amazing that a seemingly "ordinary" virus could cause all this trouble. Compromised immunity due to chemotherapy is no joke! 

As of about noon on Saturday  (today) we are home. Ania is so happy and as soon as she got out of the car, she laid down on the the front lawn of our house and said "ahhhhh". Good to be home! 

God Bless,

Erica

Chemo Cycle 3- Halfway There

Ania had her third chemo treatment this week. Halfway there- a cancer free life to come.  Chemotherapy is a journey that she alone must take, trusting only on God's given strength to complete. We, her family and friends, will continue to stand by and support her physical and emotional needs through the journey as best we can while she sails onto the other shore named "CURE!"

Here is how this round went....

Dancing in the waiting room!

We arrived on Tuesday morning to have her blood labs drawn to make sure her counts were high enough for treatment. Thankfully they were so she was admitted shorty after. She is starting to get smart about the "routine" so she was pretty pouty about having to stay. Her lovely nurse helped Ania "fly" to her hospital room- she used her lab coat as butterfly wings to get there with Ania!

Right when we arrived there was a big arts and crafts event happening and she gladly joined in.

Before chemotherapy, it is required that she have 2 hours of prehydration though her IV port. More waiting time but also more time to play before the tough stuff.

Bubbles! 

She had her treatment around 5:00pm.

The first few hours following were just fine. She was in good spirits.

And enjoyed racing with her little brother around the hospital hallway track.

About 3 hours post treatment is when her window of fun usually closes. Round three was no easy round. It was actually the hardest reaction yet. Once vomiting started, she was getting sick every 10-15 minutes for the next 6-7 hours. She was on a heavy nausea cocktail that didn't seem to help at all. Initially she was on Benedryl & Reglan. That mix helped her last round. This time, not so much. It wasn't until they added Ativan that she got one 3 hour stretch of peace and sleep. Her little body was beat up. Imagine doing sit-ups for 6-7 hours straight! 

Her Wings decorating her IV pole :( not in flight for a few rough hours. 

She slept in late through the morning. To keep ourselves busy, Mimi & I made butterflies out of coffee filters and pipe cleaners. We decided to decorate her door with "Ania's Butterfly Garden" to bring a smile to her face when she finally could wake.

Well, we made so many butterflies while she slept so we "butterfly bombed" the floor:) Butterflies "landed" on all the doors of other children staying at the hospital too! 

When Ania finally woke, she helped make some more butterflies- 

And even hung some around the floor :)

Other than the butterflies that were passed out, Ania gave more- when she was feeling up to it, our little generous butterfly delivered presents to the other kids on the floor from the abundance that she has received over the course of her cancer year. She kept saying, "l want to give to more kids!" until she said, "I run out of gas" and we returned to her room. A valuable lesson- the act of giving- she recieved this week- even in the midst of her own challenging time. 

Goal of the day: 

Once again, we stayed an extra day due to exhaustion and the lack of fluids and food Ania would eat. She was just not mentally ready after her hellacious night before. To be sure, it was decided she stay to avoid dehydration. 

More room decorating ensued:

Painted windows :) 

And visits from Daddy & brother Kellen:

We had a restful night so there was no doubt she would be released in the morning. 

Before we could go, we decided the butterflies that decorated her room must "migrate" to the playroom.

They landed for all to enjoy!

As of about 11:00am, we are home- and very thankful to be here! Check round 3 off the list. Three down, three to go! Now the count down begins to cancer freedom!

 Arriving back home!

Thanks again for all the prayers and help over the last few days! 

God Bless,

Erica

A Bold, Beautiful & nearly Bald Ballerina

I absolutely love this image of Ania. It was right before she made her return to ballet class this week- she hasn't been to class since probably March. The class is in the evening and that's a tough time for Ania as she is usually too tired to go. This week, she got a good nap in beforehand so she was full of energy and ready to go! She put on her leotard and tights and started stretching before we left for class. She is so dedicated! She didn't skip a beat and got right back into her element of dance! 

Her hair loss is hard to ignore now. It's obvious to everyone now what this little girl is experiencing. She has a little bit of whispies left. Up until now, Ania has been pretty oblivious ( or in denial) to her near baldness. She saw this picture of herself today and said " where is my hair?"...... She also saw a picture of her baby brother and thought it was her... He is pretty bald too ;) She has come to awareness I think but knows it will come back soon. She is ok with it. She is truly beautiful- even if she is bald! Beautiful, bold, & bald! 

This weekend we are going on a "mini vacation" to a beach house in Michigan. It will be an excellent chance to relax and energize our spirits before her next chemotherapy session on June 3rd. As long as her levels have risen to appropriate levels that is. She's been borderline transfusion.... And keeps getting by by the skin of her teeth. I am praying she is all good to go so we can stay on track to finish this treatment by the end of summer! 

God Bless,

Erica

A Dainty Warrior....DeLorean???

If you've been reading and following our story, you may have noticed a DeLorean  (you know, "Back to the Future" car) hanging out in the back of some if our photographs.....

Our "shipping department" is at the DeLorean Motor Company Midwest. http://dmcmidwest.com/

Ania's Mimi & Papa own & operate the Chicagoland location that sells & restores these iconic cars! For as long as Ania has been painting, they have wished for a DeLorean painting of course :) So- Wish granted!! 

We decided to do it in a fun, whimsical and colorful way! Ania said she would like a rainbow in the background and dandilion "wishes" in the grass. We also had to add a pretty butterfly to represent Ania ;) 

She was on a roll the other day and finished the entire background in one sitting! This morning she woke up and said she wanted to finish "Papa's  "Lorean"!

She's also been painting her own signature now as she has been practicing writing it out!

So here it is Papa! (and fellow DeLorean lovers!!)

Prints are now available in the Dainty Warrior Etsy shop! 

https://www.etsy.com/listing/190485132/papas-delorean-dainty-warrior-print

Enjoy!

God Bless,

Erica

 

Metamorphosis Begins

Ania put the last patch on her butterfly eye patch poster today. It also just happened by coincidence that the day she finished this chart of 50 days of patches since she had her left eye removed That it's ALSO the day we met with the ocularist for her first prosthetic eye! 

A finished butterfly! 

And a new eye!! So long patches! Time to "release" the patch butterfly :)

Ania recieved a butterfly habitat kit in her Easter basket a few weeks ago and the little butterflies began hatching out of their cocoons yesterday. Another heaven sent coincidence I think that symbolizes the major change going on in Ania's life right now! 

She will watch them for the next few days and then release them out into their new world! 

This morning we met with the ocularist and I was so excited! Ania was pretty nervous and anxious. In a conversation I had with her yesterday, she reveled that she didn't want a new eye because she "didn't want her good eye to be taken." I assured her that was not going to happen and it seemed to make her feel a little better! No wonder she has been so fearful! 

When the ocularist tried to look at her she was pretty resistant but he was able to take out the conformer that's been in place since enucleation. He took a look at her right eye to see if he could find a good match for her to wear for the next few weeks. 

Here is the clear conformer that she has been wearing since enucleation and the temporary prosthetic he chose for her to wear. Ania will wear this one for the next 3 weeks to help condition and stretch her socket. It's pretty close to her eye color- maybe a little more hazel than her natural eye. The white area of the prosthetic is also a little darker than her own, but again, the ocularist will create her "perfect match" in a few weeks. 

Preparing the temporary eye for her...,

Once he put the eye in, she seemed pretty relieved and surprised with how simple it was. She wasn't ready to look at herself in the mirror though ;) That would not happen until we were back home. 

Mike and I took her out for lunch and I just couldn't stop looking at her! I started to tear up because I was so happy to see her with 2 eyes again! I have grown so used to seeing her with only one, I didn't realize how happy it would make me feel to see her without the void. She looks beautiful- even when she kept sticking her tongue out or making silly faces at me when I told her how great it looked! 

When we got home she finally took a look in the mirror

Hmmmmm..... 

"I like it!"

So yes, my little butterfly is starting her metamorphosis to cancer free life :) By the end of summer/early fall, she will have her custom eye finished and chemotherapy will be completed. We are on our way and starting to feel the excitement of freedom from cancer!

God Bless,

Erica

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