An Unexpected Triathalon

On October 23rd 2013 I signed up for  and began a Triathalon. I hadn't even trained for it or prepared for it mentally in any way. I didn't know it was a Triathalon at the time it started either. This race has changed it's course several times now. The terrain and elements fight back. I take it one step and a time.  It's the Unexpected Retinoblastoma Triathalon. 

In October, Mike and I started the "Swim" portion of the event. We received Ania's diagnosis of cancer and just dove right in to the trepid water. No wet suit. no goggles. No lifeguard to save us from drowning- other than faith. Our friends and family have become our spectators and cheerleaders. We dove right in to this scary water and immersed ourselves in the knowledge of becoming parents of a child with cancer. The biggest fear of any parent's life. Sink or swim. We swam through the diagnosis and got ourselves to a plan of action. We started Intra arterial chemotherapy in hopes of saving her life, her eye and her vision. We eventually caught our stride and felt comfortable in the water- felt like it was going to be ok and that she would be perfectly fine. After 4 months if "swimming" the water got choppy again. It was time to get out and start a new leg of the event. She was no longer responding to the intra arterial chemotherapy. She was totally blind in that eye. Our course outlook was dramatically changing.

We started the "cycle" portion in late February 2014. So many ups and downs.  Our journey was destined to Philadelphia to meet with a new specialist that maybe could give us new answers or new hope that Ania could finally be cancer free. Our minds and bodies were weary, tired and again fearful of the unknown. What steep mountain climbs were ahead? Whatever it took for us to get to the top and save our daughter, we would overcome and make the right choice to save her. That choice was to remove her beautiful eye. Cut out the cancer to save her. We would surely win this "event" by cutting it out of her life right? Not so fast..... There are warning signs of spread beyond her eye....

The 3rd leg has begun. The marathon run. We are running the longest distance and right now our lungs are burning and our legs feel heavy. We are building up our stamina and conditioning for the long haul. The next 6 months of systemic chemotherapy are going to be the hardest part of this  "race". It will be so hard to watch as our daughter shows any signs of sickness. As she loses her appetite and loses her hair... It will devistate us at times. Sometimes I will be the weak one and will rely on Mike to carry me on his back. Sometimes I will carry him. Sometimes only the cheers of our "spectators" & prayers will be enough to keep us going-encouraging us onward. The entire time, our warrior daughter will be enduring more agony and pain than either of us. She however, will still keep her beautiful outlook in life through it all. She is the toughest champion of all. She will continue to to motivate and inspire us and others even long after this Triathalon is over. 

Ania, our Dainty Warrior, will be the champion.... In time. 

Now, time to keep running. There is still a long road ahead. Keep the faith going. Keep the strength going. Keep the support going. Onward. 

God Bless,

Erica

A Royal Time at Medieval Times

We often drive past the Medieval Times castle on our way to grandma's house and Ania always asks to go. Today she had her chance! 

We were contacted by the Bear Necessities Pediatric Cancer Foundation a few weeks ago- they grant "bear hugs" for kids going through life threatening illness. Today's adventure was thanks to this wonderful foundation! They really pulled out all the stops! Front row seats for our whole family/extended family & a generous gift certificate for the gift shop- of course Ania picked out a beautiful pink princess dress, crown, & wand to wear for the show! Her cousin Liam also was able to get a very cool sword and shield! The two of them enjoyed running around and playing in their new dress up gear before the show! 

Lady Ania & Sir Liam 

 

 

After some run around time, it was time for the show! We were cheering for the Red & Yellow Knight.  Here are some excellent pictures from the show taken by my cousin :

 

 

 

 

Our Red & Yellow Knight! Ania kept referring to him as " My Guy" 

 

She was really into it! And loved the utensil-less meal too :)

Our Red & Yellow night ended up winning the entire tournament! He chose Ania to be his lady and offered her a "diamond tiara"..... She was a bit frightened of him when he came to offer it to her- she actually turned him down haha! Poor guy had his heartbroken by a little girl! 

 

He won the tournament but not her heart HaHa!! 

All in all, we had a wonderful time! Thanks again to the Bear Necessities Pediatric Cancer Foundation for a fun time!  

  Tomorrow is a busy day. Port placement, MRI and first round of systemic chemo. While it's not going to be easy, we will get through it. Ania will prevail and be victorious like our valiant red & yellow knight! 

God bless,

Erica

 

Latest Dainty Warrior Art Happenings

I've been so busy only writing serious and not so fun blog entries. Here is a fun one of Ania at work on some of her latest works of art!

3/24 Zebra

3/25 Firetruck

This was a special request from the Lake Villa Fire Department :) In May Ania will get to hand deliver this painting to the fire house and get to hang out at the station for some ice cream and time playing on the trucks!

They loved it! See you soon brave fire fighters!

4/2 Mama Dragon

Little Brother dabbled a bit too while Big Sister worked on her dragon!

When she finished, she told me it was a "mama dragon." ;) 

Besides painting canvas, she's been into drawing "tattoos" on herself too!

Pretty awesome Flower tat! 

The Dainty Warrior Etsy Shop is pretty much stocked with all you see here and more-  the dragon will be up in the next day or two. Also, my printer friend has been working hard on something new and exciting! Very soon there will be blank greeting cards with Dainty Warrior art on the cover! They will be the perfect stationary for any occasion! Since we have done several paintings of birds, the first avaliable set will be a box set of 10 cards: 2 peacocks, 2 cardinals, 2 pink flamingos, 2 owls, & 2 swallows! 

I can't wait to see- and use them myself!

Stay tuned.....

Oh! And we are finally all caught up on orders placed after the NBC coverage and while we were away in Philadelphia! That was hard work to get over 400 orders out! Big thank you to Dave & Julee, Tom & Marcia, Sue & Dean for all your hard work labeling & stuffing all those tubes!!! 

Tomorrow it's back to the not so fun time. We meet with the oncologist to learn about how the systemic chemotherapy process will happen for Ania.... 

God Bless,

Erica

Out of Body and in Our Garden

Out of Body....

It's a double meaning.

 I want cancer out of her little body and I feel like I am entering a new phase of this journey. It feels like an out of body experience we are about to embark on. I am about to watch my daughter fight the fight of her life....again....and this time the battle will be a lot harder. Is this really happening? Yes. All I can do is watch over her and offer her all the love I can muster. 

Yes she's had chemotherapy before but this is different. Last time it was a small dose that only traveled directly to her eye. She still appeared healthy.  This time it's 3 chemo drugs that will go through her whole body. Systemic. I will watch as she faces the decreased appetite, nausea and hair-loss..... We will have to take extra precaution to keep things clean and germs to a minimum. Limited activities. She Is going to look like a "cancer kid" in a few weeks. This is hard. I feel like I need to cover my heart in the toughest warrior armor to protect it from breaking into a million peices right now.

Yesterday the doctors office gave her this doll to help us prepare her for her future appearance......

We will make time to make things grow- 

My mind keep wandering and thinking of our happy place- our garden. This summer while in the midst of all this scariness, we will try to maintain as much normal as possible. Every summer we try to out-grow the previous summer's garden. Even though we live in the city, we get a wonderful variety of fruits and vegetables on our small city lot.  This coming summer I see us spending lots of time cultivating and watching it grow. Ania has been part of our gardening every summer of her life. This summer will be no different. I am so looking forward to watching life and growth happening in our garden more than ever. Gardening will be a welcomed distraction from the cancer that has invaded our precious family like a weed. 

Back to the NOW of Next week....

On Monday Ania will have a hearing test to get a baseline because one of the chemo drugs could cause hearing loss. Tuesday is the big day. First she will have an MRI done followed by a procedure to place a port in her body so chemotherapy drugs can be administered more easily over the course of treatment. The port stays in place for the next 6 months. After the port is placed, we will be checked into the hospital and stay there for the next day. She will have her first round of chemo on Tuesday starting with the drugs Vincristine & carboplatin. On Wednesday a 3rd drug, Etoposide will be added to the cocktail. If everything goes well and Ania is feeling good enough, she should be released that night. 

Even though I am with Ania day in and day out, this still all feels so surreal. Out of Body indeed. I still can't believe this is happening. 

Diagnosis and treatment last fall/winter? It felt real and I think We accepted it pretty well.

 Losing her eye? Ok, it was hard but it made sense. Treatment is not working so CUT THE CANCER OUT of her body if you have to.

Where we are at right at this moment? More treatment?   I can't really leave my body so I will be present and I won't leave Ania's side as she begins this next phase. She will be a survivor. I too will survive watching her endure- as painful as it might be- this is our life right now. It's not as pretty as our summer garden.... But Ania WILL still be in our lives this summer and beyond so it can't be all that bad....

God Bless,

Erica

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