Mercy

News from Philadelphia came today and it's not great. It is recommended that she have 6 months of systemic chemotherapy due to some concerning pathology results from the optic nerve of Ania's removed left eye. This chemo is being done as a precaution due to signs it could have spread. Since October 2013 we've already endured 4 months of intra arterial chemotherapy, eye removal and now this next part of the journey...... Mercy. 

I am still in the process of accepting this news, keeping faith, grieving and wondering what's to come for our sweet girl. We are still learning what this next course of treatment will be like for our daughter. 

I know I will gain my strength and composure for Ania but today is not really my most graceful day. I want to run away and scream MERCY at the top of a mountain far away so no one can see or hear me do it.  I don't live near the mountains so instead I turned on a children's music station while the kids ate lunch and hid myself behind the counter top and just sobbed. I know I have to keep a brave, happy, fearless face on for Ania. I'll figure out how to do that somehow soon.

 

My dear girl, who is not filled with fear of climbing trees....  May you continue to show such fortitude and bravery with cancer. 

Please keep up the prayers for Ania. Keep strengthening prayers going for her dad and I too. We are going to need it. 

God Bless,

Erica

Birthday Wish

Today is my birthday. I have a very important birthday wish. I wish for a cancer free daughter. I am still waiting on pathology reports. I was hoping for a miraculous phone call today from Philadelphia about a Ania's test results. No such luck. 

Today was a great day non-the-less thanks in big part to spending it with my loving husband and darling children. What a trying year it has been! We still have so much love regardless. So Here's to hoping the next year of my life comes bearing tidings of good health and healing!

And just because This picture makes me laugh....

Sock it to your daddy little guy! Ha! 

God Bless,

Erica

When Warriors Meet

Today we were able to meet another Retinoblastoma warrior and his mother- in person. It was such a special day for me personally because Jake and his mother Beth have been one of the biggest sources of strength, information & inspiration over the last 6 months of our journey. 

When Ania was diagnosed in October 2013, we had never heard of retinoblastoma. We were thrown into this new world of never before heard cancer lingo and treatment procedures. It's such a fog to me now as I try to recall those early days. At some point I will go back and read the first few blog posts if I feel like reliving that time frame I suppose. What I do remember most is that I had the guidance all along from someone who was introduced to me through a mutual acquaintance. I now lovingly refer to Beth as my "retinoblastoma mentor."

See, Beth is a warrior too along with her beautiful son Jake. Jake has faught a long long battle with retinoblastoma that has left him with one prosthetic eye and the other eye with very minimal vision remaining- his strong mother has been through it all with him. She has made herself an expert in parenting a child with Retinoblastoma. She has battled it out hard, doing everything she could, seeing many doctors and trusting her instincts all in the name of doing what was best for Jake. I admire her greatly! 

Through every one of Ania's Appointments, exams under anesthesia,  chemotherapy sessions, and the recent loss of her eye, Beth has been my number one, go to source for information. She would text me every time and I would ask her questions and get reassurance every step of the way.  We have cried together, laughed together, shared fears and victories together- all via TEXT MESSAGES!  That's why it felt so good to actually meet her in person today- and get a REAL hug!! :)

And there's Jake. Sweet, amazing, inspiring Jake!! This boy is just a gift- he really is! He's handled his long road of cancer in such a tough yet graceful way! I felt like I was meeting a superhero today as I anticipated his visit. This radiant boy, who has been through so much, who rollerskates and rides his bike around his neighborhood even though he is practically blind, who LOVES hockey & who shows his mom such gratitude and love at perfect moments in their lives, was an honored guest at our breakfast table this morning! I should have asked for his autograph :)

Jake and Ania, two little warriors who have inspired so many, met today. And it was delightful! Ania led him around her bedroom, he asked her about what was in her room, she described things and helped him feel around for a little caterpillar toy she made and was eager to tell him about. My favorite moment though, while they were sitting on her bed, Jake picked up a stuffed Minion character from the Dispicable Me movie and asked what it was. I listened as she told him and he moved his hands over the toy and then he asked "Does he just have One Eye?" And she replied "yes!" And the two of them just busted out in giggles! 

Two of the bravest and most inspirational kids I know!!

Thank you Beth & Jake for joining us on our own journey. Thank you so much for your friendship and mentorship. We couldn't have made it this far without you! 

God Bless,

Erica

Healing & Reveal Time

Ania has had a great week of healing time. Life as usual for the most part filled with playtime, lots of tomato soup, bread and butter (favorite foods right now), painting and ballet!

Here's a week in picture review:

Lots of snuggles!

Smiles

Rest time on the couch is better with a pretty butterfly balloon overhead!

She's Back to painting! On Sunday she asked to paint a mermaid. I enjoyed drawing this one for her for 2 reasons- for one, I have always thought mermaids were so beautiful and magestic (what little girl hasn't wish to be a mermaid at some point?!). The other reason I enjoyed drawing it maybe a little more was because it's her first painting post eye removal and it just thrills me to see her creative spirit back so soon ( 3 days after her procedure!). 

Her mermaid turned out beautiful :) Check her out in the restocked ETSY Shop.

Speaking of ETSY Shop.... I've been busy with the help of my mom trying to process over 400 orders that were placed while we were in Philadelphia. It's a great distraction and we are trying to get everything out as soon as we can. Those who are still waiting, thanks for your support and understanding as we are working through them all over the next few days/weeks. I am so thrilled to see Ania's art is so loved! The thought of her works hanging in houses all over the country just fills me with such love and joy! There is one print actually hung up in another country! We met another little girl's family who traveled from Serbia to see Dr. Shields in the waiting room the day Ania lost her eye.  This little girl, Kalina,  is just about Ania's age and was also having her eye removed the very same day. It was nice to meet her wonderful parents and we wish the best for Kalina's future!  Ania has heard all about Kalina and likes that she has a copy of the "Queen Ania's Castle" print. in her home all the way around the world!

Ania has another creative outlet- ballet. Last night she even made it to her ballet class! She enjoyed seeing her teacher and little ballerina friends. 

Today we went back to our parent/child class too at The Chicago Waldorf School.

Putting her imagination to practice at school.... 

And enjoying a knit eye patch made by a friend for her and Rosie doll.

Snuggle time with her "puppy"

And the Big reveal......

Today was also a big day. Today we went to her post-op appointment. That also meant the bandage could finally come off. Ania has been complaining about it itching her so she was happy to hear that it would come off. I was a little nervous at my own reaction but have prepared myself as best as I can for the reveal moment. She sat on my lap as they removed the big bandage. I snuck a few looks but didn't really get a good look until we were in the car. You know what? She's still my beautiful daughter of course! Yes she may look like she's been in a bit of a battle right now with the bruising etc. but that's to be expected. She has been in a battle- a battle for her life! She is such a warrior and has a few bruises and battle scars to show for it now but she still wears all those marks with a smile on her face! She smiles at me and tells me she loves me just as she did before. She paints and she dances just as she did before. She inspires me constantly just as she did before. She is a radiant child- through and through!

Bandage free!

Her eye is sewn shut with stitches that will dissolve over the next few days. There is a perminant implant sewn into the socket that her muscle tissue is attached to that will help maintain the appearance of eye movement once she has her prosthetic in place. We have to apply some ointment daily and in a few weeks once she is more healed, we can start the long process of getting her prosthetic. I'm hoping by her 4th birthday at the end of June, she will have her new special eye. I'm also hoping and praying to get the news that she is completely cancer free sometime in the next few days. Just waiting on the news from pathology that the whiteness that was seen on her optic nerve was just scarring from chemotherapy and not cancer that has spread.... One day at a time.... Healing time is a process.... That we cannot put a rush on....

And Here she is cooking dinner with her daddy tonight ;) just another normal night! 

God Bless,

Erica 

 

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Guest Post- Heart to Heart with Ania & Mimi

The following is written by my mom Julee- aka Mimi to Ania. She was with us on the Philadelphia trip and here is her account of the trip. So sweet......

Seven days of being playmate, roommate, bedtime and early morning snuggle buddy, explorer, best friend, comforter, spiritual guide, and HER Mimi...

I will never be able to describe this experience completely. I just know that I am better for having been a part of her world.

Monday was a hard day of waiting, tests, waiting, decisions, tears, and more waiting until Thursday. 

Waiting room....

On Tuesday morning after breakfast, Ania and I found a quiet hallway in the hotel and played "Doctor Ania" for quite a long time. She is a very good Doctor as she explains every step of the exam she gives-even down to being an absolute truth-teller about the "icky" medicine I would have to take and how much the "little pinch" would hurt before I got a lollipop to ease the sting. I would ask her to look at my "broken eye" and she would look very carefully. When she was done, she would say, "Now it is your turn to be the Doctor and you can look at me!" Mind you, we had no Doctor toy props...this was pure imaginative play. Our matching butterfly necklaces were our stethoscopes, our curled hands were our ophthalmoscopes, our fingers were syringes for giving icky medicine or pinches, and a hotel decoration containing several pieces of some kind of decorative fake fruit were our lollipop prizes! 

Matching necklaces used as stethoscopes 

Dr. Mimi examined patient Ania with special attention to her broken eye. I asked her if she knew that Mommy and Daddy were doing their very best to try to get her eye fixed. She said yes, but she understood that sometimes it is hard to do. "Ok! Now it is Dr. Ania's turn again!" 

Wednesday night, before her enucleation, I gave Ania her bath. While she was sitting in the tub, she was covering her broken eye. I asked her what she was doing and she said, "It is ok." I again made sure she knew that Mommy and Daddy along with Dr. Shields were doing their very best and she said, "I know...they have to take it." My heart about stopped. I asked her why they have to "take it" and she said, "Because they can't fix it." And with a little shrug of her shoulders, that was that. 

As I was getting her jammies on, she said, "Maybe in the morning we could build a "bort" (fort) and go inside!" This is something that I have done with her before by placing blankets across the space that separates two beds. I said that we would try if we had enough time before we went to See Dr. Shields. That was good enough for her. 

As it has been our custom for a long time, we read a story together and then we say our prayers focusing on how much we know God loves us and asking him to bless everyone we can think of! We prayed specifically for Dr. Shields to be blessed for the next day. We always close with singing "Jesus Loves Me" and a kiss. As she rolled over to go to sleep, I asked if it was ok if I sang the Ania song to her and she said yes. "I love you forever, I like you for always, as long as I'm living, my Ania you'll be."

Early morning fort building with Mimi! 

Thursday morning Ania was up bright and early and full of wanting to build her fort. We got right to work using blankets, pillows, and a cushion for the door. We needed some light so in went my IPhone with the flashlight turned on. As you can see by the picture, it was grand and made more special when Daddy went in and read a story to her and Kellen.  As the rest of us got ready to go, Ania spent a little more time in there by herself until we were ready to go to the hospital. You have all read Erica's beautiful account of the rest of the day.

At bedtime that night, we skipped the story and the longer prayer together. I quietly laid next to her and sang the Jesus Song and the Ania song. Trust me, I have spent may prayers asking for the Holy Spirit to make them for me as I am often incapable of clearly stating them.

Friday was a day of making Ania as comfortable as possible as we travelled home. Papa picked us up at the airport and was given the Doubletree Chocolate Chip Cookie that Ania had insisted that we save for him! Once home, we relaxed, hugged, and snuggled until Ania was ready to go to sleep. Although she didn't want me to go, she (and I) knew it was time and that I would be back. At her request, I sang the Jesus Song and the Ania Song one more time before leaving. 

Back home with her Papa

Today as I prepared to put my thoughts together for this blog, I found this Ania "selfie" on my phone. She had taken it while she was alone in her fort before her surgery. It just about wrecked me... 💘

A hauntingly beautiful self portrait of the left side of Ania's face taken just prior to eye removal 

My sweet, sweet, Dainty Warrior - as we wait for what is next on your journey, know that your Warrior Mimi loves you beyond words and I look forward to all that God has in store for your beautiful life. Look at all he has provided already!

Julee (Mimi) <><

I Will Wait for You

Ania's favorite song is "I Will Wait" by Mumford and Sons. She will sing it at the top of her lungs with such vigor and just run throughout the house. It's her superhero theme song. And it's perfect if you read the lyrics.

Today we did a lot of WAITING prior to her eye removal procedure. Lots of time spent keeping her busy and for us to contemplate what was about to happen. Agony for us. Ania, just danced and played like she always does. Without fear.

 

She wore her special butterfly wings and ballet shoes and just put on a show for the waiting room. Hardly a single complaint from her for the nearly 6 hour WAIT time. 

When we were finally called back, she started to get a little nervous and anxious but remained as brave as can be. We helped her into her hospital gown and she climbed into her daddy's lap for a little nap. While she was asleep, the doctor came in and marked her face with an arrow pointing at her left eye. War paint. A map to the war zone in her eye. 

She went back for her procedure shortly after and Mike and I took a moment to hug and reassure one another that all will be well. 

Nearly 2 hours later we were summoned back to see our girl. She looked so very peaceful and angelic- even with the large bandage covering half of her sweet face. 

Dr Sheilds came in to tell us that the eye removal procedure went very well and that removing her eye was absolutely the right decision. Her eye was full of disease- over A MILLION tumor seeds were in that eye. It gave us great relief to know we did the right thing to save our daughters life. No questions about that fact remain. 

However, one question still remains that we did not expect. Apparently the optic nerve of Ania's eye appeared white/pale and that can be a sign some the eye cancer metastasized (spread) beyond the eye.  It also could just be a sign of damage done by all the intra arterial chemotherapy she's had over the last few months. She gave us a 40% likelihood that it's still cancer and in that case, Ania would need to have 6 months of systemic chemotherapy. Not what we expected nor wanted to hear. It actually devastated us. Ania's removed eye will be sent to pathology and in 2 weeks we will find out which path the journey is taking us down. More WAIT time. I was fully prepared to celebrate a cancer free daughter today. We unfortunately don't get that celebration yet......

This information left me feeling angry and weak. The weakest I've felt through this whole 6 month experience. Thankfully Ania has not seen me at this low point because she has been sleeping/resting through it. 

When we returned to the hotel, I felt so angry and crushed. I did myself (and everyone else) a favor and put on my running shoes and went down to the hotel gym. I kept the image of Ania in the recovery room in my mind and played her "I Will Wait" song on through my headphones. I ran very hard for the length of the song. As soon as it was over, I lost it. I cried and just mourned the loss of our celebration day I was so looking forward to. After a few minutes, I felt better- and it hit me. 

"I WILL WAIT FOR YOU.... "

I will wait for my Ania. She will get her celebration day. It may be in 2 weeks or it may be in 6 months. It doesn't matter. She WILL get her day. 

"I will be bold. As well as Strong.

I'll use my head, alongside my heart."

We will get our celebration day. Just not today. It's all just part of the bigger picture and HUGE impact Ania is having on showing us what true strength is. I find peace in knowing that. It's all I can think right now as we WAIT. 

"I WILL WAIT FOR YOU.... " and I will sing it loud and proudly like Ania does... Or just run really hard when I hear it ;) - for Ania.

Ania & her special Rosie doll resting this evening.

First post-op smile :) that's my girl!!

Tomorrow we return to Chicago. We will try our best to focus on recovery and helping Ania adjust. In a few weeks we will know what's next as far as this crazy cancer journey. In 6 weeks Ania will get a new special eye made just for her. What an emotional day today was but at the end of it all, we will still take time to smile, laugh, sing, dance, run or do whatever it is that allows us to keep up our strength and bring us joy!

Thanks for all the kind words, thoughts and prayers today for Ania and for us. It does not go unnoticed. 

God Bless,

Erica 

Little Rocky & Philly Adventures

Last night, Ania and I had a sweet moment together where I was able to touch on what has been going on with her and what's to come. We were laying in bed snuggling and playing peek-a-boo. I covered her right "good" eye and left her "bad" left eye uncovered. She is completely blind in that eye so I know she could not see me. I held my hand there for a moment. When I pulled my hand away, she gave me the biggest, sweetest smile and said "There you are!" 

I felt like it was the right time to say something. Here's how it went:

I said, "You know daddy and I have been taking you to doctor so much to try everything we can do to fix your broken eye. I'm sorry, It's just not working. We will be getting you a new special eye soon."

And her amazing response? 

"Yea I know. It's hard. You have to be brave and strong." 

She is telling ME to be brave and strong. It's as if she understands that this decision did not come without much agony and tears. As if she understands that mommy and daddy have been heartbroken to have had to make this choice. It's as if she just knows it must be done in order to save her life- and she is ok with that. She is so brave and strong herself. I am so lucky to witness her strength on a daily basis.

We've had a few days to enjoy Philadelphia and I must say, it's a great city! It also helps that it has been 60 degree days and coming from Chicago this winter, that's downright tropical! Here are some picture highlights of what we have been up to: 

Meeting ABT ballerina Misty Copeland

Philly Cheese Steaks at Pats

Que the "Rocky" Music...... Here comes Little Rocky!!! 

This, by far, was my favorite experience. Ania is certainly tough like Rocky- and cuter too ;) 

And dinner at our namesake restaurant- "Moriarty's"

Today was a fun filled day too! 

Ania went incognito as we ventured out into the city- 

Started with a yummy lunch at one of our favs Chipotle- 

And spent the afternoon at the Please Touch Museum- a wonderful play museum for children! 

Kellen on the keys :) 

Dr Ania

Carousel ride :) 

Kellen & Daddy too!

Needless to say, today wiped them out... They both passed out on the bus ride back to the hotel! 

It's been such a fun past few days. The reality of why we are here though, is creeping back in. Just got word that her procedure is at 9:00am. I had a little meltdown after the phone call but I'm trying to keep my daughters words in mind. 

It's time to be brave and strong. 

Ok my sweet, warrior girl. I will listen and  I will be strong with you. Tomorrow is the start of a cancer free future. For that, I am excited. Sorry cancer. You have met your match in the Dainty Warrior- and like Rocky- she will be a champion!

God Bless,

Erica

Where We Are At

Our cancer journey is ending. Ania will be cancer free by the end of the week. Not by any miracle treatment or drug- rather by enucleation. Eye Removal. On Thursday of this week, Ania's left eye will be removed in order to make her cancer free. In order to save her life. The tumor just has left Ania's eye FULL of residual seeds that cannot be contained/destroyed/dissolved by any chemotherapy drug at this point. Dr Shields thinks she may be chemotherapy resistant and that any more treatments would be keeping her life at risk.  While we are devastated over the loss of Ania's eye, we have done all that we can do so this is where we are at. I am at peace with this solution for the most part as all I have been praying for was a clear answer from the doctor. 

We fell in love with her beautiful eyes the moment we met her almost 4 years ago. I'm sure we will mourn the loss of her eye greatly. However, we are ready for the cancer that has invaded her precious little body, gone. That eye is a threat to her life so it is time to move on. Ania will be ok. We just have a new phase starting soon- RECOVERY.

Right now, I can be thankful for the fact that we did everything we could. Ania's life will be saved. I am thankful for the clear answer from the doctor I was praying for. I am thankful for the support of my husband as we went through this tough day together and the peace we feel right at this moment with our decision. I am thankful for my mom Julee for being here with us and for giving Ania some normalcy on this strange trip. I am thankful for the friends and family who have lifted us up in prayer and hope that you all would continue to do so as we embark on this next path. 

I'm not sure how I will explain it to Ania. I'm not going to worry about it today though. I'll pray that the right words will come out when the time is right. For now, I am just going to enjoy Where We Are At.  We are at a peaceful place of resolution and a cancer-free life ahead. 

God Bless,

Erica