A week from today

Its 7:00am. A week from today, December 4th, will feel little like Groundhog Day I would imagine as we go in for Ania's second chemotherapy treatment. I pray this time is a little easier for her. For us. I pray that the doctor finds the tumor has shrunken and we get a little sliver of hope that the end is a little bit closer. I pray that my dainty warrior stays strong and understanding. 

She is like a lion- with a pretty pink tutu mane of course!

Have a great Thanksgiving everyone! We have much to be thankful for indeed. I know I am so very Thankful for EVERY person who has kept us in their thoughts and prayers over the last month. It has kept our family so strong to know we are not fighting this battle alone! 

God Bless,

Erica

Little Warrior Boy

Always looking up to his sister. Wanting to be just like her.... 

Today I took Kellen to the retinal specialist office to rule out him possibly having any sign of Retinoblastoma. Ania came too so she could show her little brother what it was like to be brave and strong. 

We waited in the crowded office for over 2 hours. I tried to keep Kellen busy with the old magazines and small assortment of toys they had in the waiting room. Ania  was happy with her crayons and coloring books. She is quite the little pro at waiting room etiquette. Kellen, at 11 months old, only tried to eat the crayons and rip up the magazines. 

Waiting room "fun"

When we were finally called back, the nurse gave him some eye drops to start dilating  his eyes. He actually kind of laughed when she put the drops in at first. That didn't last long once the sting settled in I'm sure. He whimpered a bit so I breastfed him for a few moments.  We had to go back to the waiting room to give his eyes proper time to dialate. They called us back again and the nurse put a second and third round of dialating drops. He didn't laugh this time. He wriggled and cried. Ania stood at his feet and quietly said "Baby not like that, he's sad."  

Dr. Shaprio came in and tried to take a quick look at Ania but she hid her eyes from him.  I had told her beforehand that this appointment was for Kellen's eyes so she was holding me, and the doctor to that fact. While the doctor set up his apparatus, the nurse told me they would have him lay on the table and swaddle Kellen's arms and I should hold his feet. She then said they would give him some numbing drops and there would be some pressure applied to his eyes but he shouldn't feel anything. 

I laid my baby boy on the table and the nurse tightened the swaddle around his arms. Kellen of course screamed and writhed around like an angry crocodile.  I held his little feet and ankles in my hands.  The doctor turned off the lights completely with the exception of his special head lamp.  Ania told me she was afraid of the dark so she came and sat at my feet.  Next thing I looked up at my boy and the doctor had put some metal tool in Kellen's eye that made it impossible for him to shut his eyes. It looked awful.  He was really crying now.  I've never heard him cry so hard.  He sounded so frightened and all I could do was hold his little ankles.  Ania remained by my feet and was humming a little song quietly.  

The exam took about 10 minutes I think. He screamed the whole time.  I just put my head down on his little legs because I couldn't watch what he was going through.  Instead of being sad or crying like I would expect, I started to get this feeling of ANGER creeping up inside me! I just wanted to yell "Stop- my children have been through enough!" Through this whole ordeal of Ania's cancer, I have been pretty accepting with moments of sadness here and there. Not yet have I experienced anger- until today.  I just started thinking how unfair it was.  Both my kids have now been through exams that no kids should- and that makes me angry today! Maybe tomorrow I will feel different. Maybe tomorrow I will feel more at peace with our reality once again.  I just have to keep the faith that were are on the right path to fixing this situation.  I have no other choice.  

Once the doctor finished, he said he saw no signs of tumors. Relief. He encouraged me to call the genetic testing office ASAP so we could find out if Ania's case was genetic or not.  He also said by doing the genetic testing we can hopefully avoid putting Kellen through this ordeal ever again.  Of course we will be vigilant and keep watch over the appearance of his eyes for the next 5 years. 

Clear blue eyes- thankfully!

So he wants to be just like his sister- and in many ways he is.  In this case of cancer, I hope and pray he does not ever share in her diagnosis fate.  One thing is for sure, I have TWO very tough little warrior children.

God Bless,

Erica

We Play the Days Away

Just Before all this cancer stuff started happening, I had been in the process of sort of re-organizing my parenting style and the quality interaction I had with my children on a daily basis.  I've always been a creative person but I often found myself parking Ania in front of the tv maybe a little too much. Netflix has great children's shows but it's dangerous. Ania can be quite the little "tube head"- she would sit in front of the tv for hours if I let her. Kellen on the other hand, is a doer. He has NO interest in TV yet and likes to tinker around with objects and try to figure out how things work ( less than a year old and already showing signs of an engineer like his great grandfather, Papa, & Uncle Gary!). So since I had a little doer and a little tube head on my hands, I had to start working a little harder at keeping them not only busy, but engaged- in fun, educational and unforgettable ways!

Getting back to nature

I've always been a fan of blogger Play At Home Mom ~ there are some amazing ideas and just the sentiment of the name is awesome! I'd much rather think of myself as a "Play" at home mom than a "stay" at home mom too :) I also had started exploring Waldorf education prior to Ania's diagnosis. There are formal Waldorf schools but I'd been making an attempt to incorporate Waldorf ideas into our home. For example, this past fall the kids and I enjoyed several nature walks (yes there is plenty of nature even in a city like Chicago!) collecting natural treasures like sticks, leaves and acorns for our nature table. We've also tried to spend one day a week making bread- from scratch so it took a long time to knead and wait for it to rise! 

Kellen at our nature table

Bread making is so fun!!

I've also been weeding through our toy collection and simplifying it. When our living room was filled with all sorts of loud, brightly colored, flashy toys, I found it uninspiring. I think the kids did too- Ania and Kellen would not really play with anything- just kind of throw it around. It was cluttery and just made me want to escape my own home! I'm making a conscious effort to have simple toys that bring out creative play! Simple things like a doll house, blocks & art supplies go so much further and it's great to see what they create! Music is also fabulous! We listen to a Pandora station filled with kids music throughout the day. It's great for keeping them focused on a craft or for sparking an impromptu dance party. Kellen and Ania both have smooth dance moves ;)

A budding artist...and her brother :)

Bust a move

"Ania & Grandma" Portrait

I don't expect miracles out of myself- if I can have Ania or Kellen do some imaginative/creative play for at least an hour a day- I consider it a success. Today was a really full day with cookie cutter sugar cookie baking and creating a pirate ship from a cardboard box. Again not every day is so successful. I would consider today an "A" - most days are "C" at best!

Decorating her ship

Showing little bro "X" marks the spot

ARRRRR! Pirate Ania with cardboard eye patch (kind of ironic considering her eye cancer haha!), a hook, sword, & little satchel of "pixie dust" around her neck.  Can you tell she is way into Peter Pan right now?

So while we are learning a great life lesson through Ania's cancer diagnosis, we are certainly not letting that stop us from learning how fun life can really be if you take time to PLAY. 

God Bless, 

Erica

Know the Glow

Tonight's post is a quick public service announcement. There is a saying amongst the retinoblastoma community known as "Know the Glow." It's a simple test or observation any parent or caregiver can do to determine if a child is at risk- no medical degree required.

It's as simple as taking a photograph - with the flash on and red light feature off. That's it. 

Now, go test it out. It only takes a moment! Watch photographs of your children over time too for any changes. Ania used to take regular photos with red eye up until her cancer diagnosis October 2013. 

Healthy example of Ania at about 18 months ( December 2011)

No white glow- red eye is a good sign! 

And now Ania (October 2013)

Whiteness in left pupil: evidence of a problem.

KNOW THE GLOW. 

God Bless,

Erica

All We Can Do is Wish, Hope & Pray. And Dance :)

Ania had her second time at the lab today for blood work. She colored in her Ballerina coloring book in the waiting room and showed the receptionist how she knew how to point her toes, pirouette and plié. It was a beautiful waiting room dance recital! Once she was called in, she cried and screamed of course but as soon as it was over she asked for the apple I promised her before we went in to the office. The nice ladies who draw her blood are very fast and have an easy time finding her veins. I have a feeling I will get to know them well- one of them sweetly said "See you next week" as we left. I really wish that was not the case but nice of her none the less. 

Yesterday, out of the blue, Ania tells me "Mama, my eye is all better." Oh how I wish she is right. I have felt like my eyes have been playing tricks on me the last few days because I've had a harder time seeing the tumor in her eye. I've caught it a few times in just the right light but it's not as glaringly obvious....maybe it is shrinking already???? One can only wish...hope....and pray for those types of miracles.

Research shows that there is less likely the chance that Ania's retinoblastoma is hereditary since it's only in one eye. More than likely, her case is just some freaky occurrence.  However, just to be sure, I have to take our 11 month old son Kellen in for a exam by Dr. Shapiro (retinal specialist) on Monday November 25th. I'm guessing he will dilate Kellen's eyes and use all his fancy eye gadgets to get a good look. Holding a squirmy 11 month old boy through this sounds like it's going to be quite the challenge in itself. I will have Ania come along so she can watch and assure her little brother - plus, she is some kind of expert now right?  Let's wish/hope/pray that Kellen does not share this trait with Ania. Mike and I will undergo some genetic testing in the near future as well to see if there is any chance that we did indeed pass it on to her therefore effecting other future children or grandchildren down the line. 

Other than getting poked with a needle, Ania had the best day today she's had in awhile. She was just in the best mood she's been in in weeks! All day she's been happily singing, drawing, and dancing with a huge smile on her face. She was so eager for ballet class tonight, she asked to put on her tutu a full two hours before class time. She just waited patiently and practiced some of her moves. 

Oh and played with accessories.... She LOVES necklaces, bracelets, barrettes, headbands, tiaras - you name it - she'll put it all on at once! 

Dance baby dance :) 

God Bless,

Erica

Visions of the Sugar Plum Fairy...

How precious is this? Last night, my little dancing queen Ania fell asleep at 6:00pm with her new friend Sugar Plum Fairy Barbie. She stayed asleep until 6:30am this morning! Go Dainty Warrior go! Her body must be working so hard to defeat cancer! :) I don't think she's EVER gone to bed that early before in her lifetime! 

...With visions of the Sugar Plum Fairy, dancing in her head! :) 

Normal Life (A new normal)

Its been over a week since Ania had her first treatment.  For the most part, we are keeping up with normal life activities.  She goes to school 2 days a week for 3 hours at a time, attends her ballet class on Tuesday evenings and we have almost nightly dance parties in our kitchen while we make dinner.  That is my favorite- Daddy even gets in on the dancing action! The only thing that is not "normal" is we have to go to the hospital every Tuesday so they can draw blood for lab work.  I guess that will become our new normal since it's going to happen weekly for the next 6 months.  She cried at her first time this past Tuesday and I had to hold her tight so she didn't wiggle too much. I cried quietly too while I held her because I knew this was just the first of so many blood draws and no kid should have to be stuck with a needle and have 2 vials of blood drawn every week.  It's just going to become so normal to her I suppose. 

For the most part, she is acting like her happy go lucky self.  She does seem a little more tired and has been napping more frequently.  She had stopped napping around 6 months ago but her little body is going through so much, I don't blame her.  She seems a little more short tempered but I don't know if that is just normal 3 year old attitude issues or something more. It's hard because I know she is going through so much. I need to keep a balance of keeping her feet on the ground and giving her all the extra TLC she needs..... much harder than it sounds.

So far in the last week, Ania has had none of the possible side effects of chemo - no nausea, no redness/swelling of the eye, hair loss.. That's all great news!

Here are a few snapshots into our life over the last week...

Painting acorns and drinking green smoothies

Playing Dr. Ania with friends

 

Helping Daddy install a new toilet...in her tiara :)

Naptime with brothers (Kellen & Ebow)

Making Pizzas

Time for school!

Hanging with her brother

sd 

Playing "Robots" with her cousin 

And finally, she is getting lots of "fan mail!'

Lots of well wishes!

Thank you again to everyone following our story! I can't believe how many people across the globe have read and shared our story in the week this blog has been live- OVER 3000 hits! Again, thank you! 

God Bless, 

Erica

Ania's treatment- Round 1: November 6th

Here is an EXCELLENT video that illustrates how Ania's Intra- Arterial Chemotherapy is performed ~ take a moment to marvel at this innovative procedure HERE!

  On November 6th, we arrived at Lutheran General at 7:00am.  Ania was scheduled to go in around 8:00am. While we waited, Ania and Mimi kept busy by drawing and playing with sticker books.  Mike and I were feeling pretty good but fearful for our daughter.  When it was time, she was given a mild sedative to relax. On a side note: when Ania is of legal drinking age in 18 years, she might be a fun girl to hang out with... lord help us- she was cracking us up! Anyways.....
After the sedative was in effect, I was able to carry her back into the operating room and lay her on the table.  I stroked her golden blond hair as they placed a mask on her face and drifted off to sleep.  I shook Dr. Shapiro's hand and was then whisked out of the room and reunited with Mike and Mimi.  While we waited, a social worker came in to talk with us about how we were feeling and processing the fact that our daughter was undergoing chemotherapy.  She gave us a thick book filled with tips to handle childhood cancer and treatment. However, I was kind of discouraged by the book because it seemed out of date for our situation.  All the book mentioned about Retinoblastoma was that treatment options were enucleation or systemic chemotherapy.  I just kept thinking "This is not us. This is not Ania's case. Her procedure is different. It will work."

  We went to the cafe for a little while and ate and waited. Pretty normal life at a hospital cafe I suppose.  I often look around and wonder what other people are there waiting for.  We finished our breakfast and headed back to the room to wait. Again. Shortly after returning, Dr. Grobelny (radiologist) came in and said he had successfully put the catheter in place and now the Malphalan (chemo drug) was slowly being administered.  He left us feeling confident that things were going well and it would only be a little longer until we would be able to comfort our baby.  Another hour passed. We were transferred to another waiting room to wait for her to be brought out to recovery.  I had just made a second cup of tea and were were called back to go see her. Hallelujah!

The best sight ever...

Sleeping beauty

She looked beautiful.  Our little warrior! We just watched her sleep for almost another hour. She just looked so peaceful. Angelic even. Once she woke up she was a little confused as to why she could not sit up and why her right leg was splinted but most of all, she just seemed comforted by seeing us.  I sang "Jesus Loves Me" to her when she was upset. That always calmed her! Her right leg was splinted so she could not bend it as it was very important to keep it still so the femoral artery injection site could heal properly.  She would have to stay that way for 8 hours.  She was given some anti-nausea medication because she got a little sick just before we were transferred to her hospital room for the night.  

Once in her room and reunited with her Mimi, she perked up a little bit. 

What a trooper! What a smile!

She even had a visit from her little brother later in the evening: 

Kellen says "Hi I-ya!"

Visiting hours ended at 8:00pm so Mike, Mimi & Kellen left us for the evening.  The only thing she would eat was purple Popsicles and cherry italian ice.  

About 10 seconds after this picture was taken, she threw up all those purple popsicles...poor baby :(

After  her leg splint was removed and she was given another dose of anti-nausea medication, she fell asleep as I played with her hair. I decided it was best if I try to get some rest too.

I woke up at 2:30am to pump as I was engorged from missing my baby.  She must have heard me moving around because she woke up too.  She woke up so happy! 

Hi Mommy! Lets snuggle!

We snuggled and watched a movie.  She told me she was hungry so I scrounged up some Cheerios and she ate 2 little boxes! After her movie was over she told me she wanted to walk. I picked her up and carried her down the hall to the play room.  She loved playing with Mr. Potato Head and his family...

"Makin Tatos"

And drawing pictures of mommy :) 

By 7:00am she said she was hungry again.  We ordered food to be delivered and she chose scrambled eggs, sausage and a blueberry muffin.  She ate it ALL! Around 10:30am, a resident of Dr. Goodell's came to visit and thought Ania looked ready to go home!

Homeward Bound!

All in all, she handled it like the dainty but MIGHTY warrior she is.  I am in complete awe of my daughter.  Her strength is inspiring.  Her joy is contagious. I was a changed person when I first met her 3.5 years ago and somehow once again she has changed me.  I never knew how strong I could be but watching this little person endure all that she has thus far makes me think "How in the world did I get so lucky to have this person as my child?'  What a gift! 

God Bless, 

Erica

 

So our daughter has cancer...... now what??

Now that we had our diagnosis, it was time to take action.  Once we received word that her brain was clear, Dr Shapiro (retinal specialist) & Dr Goodell (oncologist) felt comfortable taking steps to start the Chemotherapy process.  

We were given 2 choices for treatment:
1. Enucleation- removal of the eye.
You never want to imagine what its like to decide if you should remove your child's eye. It may be shallow but the possibility of yourself and others judging a little girl for missing an eye, is real. And that stinks.  The first thing you notice about a person is his or her eyes- they tell so much about a person! They are windows into a person's soul! I'll never forget seeing Ania's blue gems for the first time after she was born! Breathtaking to say the least.  Would she still be our precious little girl even if she was missing an eye? OF COURSE. Would she still be the bright, bubbly, strong child she is with one eye? OF COURSE.  I just can't imagine it without turning into puddle of tears....
Luckily, we may not have to go down that road- although, if it goes that way at some point- I'm sure Mike and I will gain our composure and strength about the issue and do whats best to save our child's life. No doubt about it.

Just look at those baby blues! Ania at 2.5 months

2. Intra- Arterial Chemotherapy (IAC)
Again, you never want to imagine what its like to decide if you should pursue chemotherapy for your child either.  Injecting a poison into your child with hopes that it only does one thing- kill the cancer without harming her in other ways? Yikes. 
Without getting too technical- I will try to explain what IAC is and how it works and what side effects to expect....
IAC is not your conventional systematic chemotherapy.  It does not travel throughout her entire little body's venous system like you would expect.  Rather than being injected through her venous system, the drug called Malphalan, is injected into her femoral artery which travels up to her ophthalmic artery and directly to her left eye.  Basically it is a straight shot of the chemotherapy drug to the eye. Bullseye!  
Malphalan is very effective against retinoblastoma but it is not suitable for conventional systemic (venous) chemotherapy because it has a high risk to destroy bone marrow. However, in Ania's case, it is given intra-arterially at a much lower dose and targeted directly to the eye so it is much less likely to cause any severe adverse side effects. IAC has been shown to provide reasonable chances for preserving her eye and potentially some vision. This type of treatment has only been around for the last 20 years (mostly in Japan) so it is a very cutting edge type of plan we've got in place!  If you are the nerdy scientific type- check out this website to see in more detail how it is done  HERE

After the delicate 2 hour procedure, Ania will have to lay flat on her back for 8 hours so the injection site can heal properly. A 3 year old- laying down for 8 hours?? We'll see about that ;)

Dr Shapiro & Dr Goodell both felt that Ania was a good candidate for this procedure.  We feel that in the hands of Shapiro, Goodell & Grobelny- we have a good shot at saving Ania's life, her eye and potentially restore some of her vision (way down the road from that last piece).

What are the side effects/risks of IAC?
~ nausea/vomiting (although lower risk than traditional chemo)
~ hair loss generally limited to eyebrow, eyelashes, and/or nose hairs on the treated side
~ local ocular complications: swelling of the eyelid, retinal detachment, vitreous hemorrage, eye pain
~ wheezing/acute bronchospasm
~ allergic reactions
~ risk for second malignancy including acute myeloid leukemia
~ infertility (hard to say how high of a risk since this has been only around for 20 years)

While that list is not exactly great- we are going on faith that she will handle it all in stride and be closely watched by us, her doctors, weekly blood labs and check ups for a long long time after her treatment cycles are over.

How long will she have to undergo IAC?
Most likely, Ania will have SIX treatment rounds every FOUR weeks. That means, we will be doing this routinely through April 2014.

What happens if it doesn't work?
We'll cross that path when we get there.  Hopefully we NEVER get there. Just know, we will do what it takes to save her life.

My next post will chronicle how Round 1 went for our Dainty Warrior, which took place on November 6th 2013.  Let me just leave you with this teaser:

Ania a mere 3 days post Round 1 treatment. Seizing the day...and the fall leaves!

 God Bless,
   Erica



   

Timeline of Diagnosis

This is a summary of events that brought us to where we are today- parents of a child with cancer.....Wow....it still sounds weird to say..... Prior to October 24th 2013, we felt fortunate- Meaning no major life trials, good jobs, a nice house, 2 beautiful children (Ania almost 3.5) and Kellen (10 months) .  After October 24th- something new crashed into our "normal life".  A big "C" - and not the friendly "C is for Cookie monster kind of C" that we were used to.

October 24th, 2013: Ania went to a Halloween dance party at her ballet school.  She wore her adorable witch costume and danced with her equally adorable dressed up ballerina friends.  She came home with so much candy I was afraid she was going to be in a sugar coma by the time actual Halloween came around. That evening, Mike (husband/father) was doing his nightly routine of reading to her when he noticed a strange reflection in her eye.  He mentioned it to me and I just kind of said, "Huh, strange. I'll keep an eye on it".

Ballet School Halloween celebration

Saturday October 26th, 2013: While at a housewarming party of a friend, I caught the "strange reflection' for just a moment as she looked up at me in a dimly lit hallway.

Sunday October 27th, 2013: After her evening bath, she sat on the couch and looked up at me.  It was really there.  We were not seeing things.  I needed to do the "mom diagnosis" and consult "Dr Google" for more information.  Immediately, "Dr Google" bombarded me with possibilities just by typing the words, "White reflection in child's eye."  The search results were terrifying and included the following words: Cancer. Eye removal. Retinoblastoma. Life threatening. Chemotherapy.  I started shaking and felt a sense of panic.  This was every parents worst nightmare, and I did not feel like I was being a hypochondriac because the example images I was presented with online looked EXACTLY the same.  I ran downstairs to Mike and told him what I saw.  That night we tried to take pictures and get a better look, hoping we were wrong. I decided I would call my optometrist in the morning to get her in ASAP.

You can see in her left eye, the "white reflection" that is Retinoblastoma

Monday October 28th, 2013:  We met with my family optometrist at 11:00am.  The optometrist was so nice and did a great job instructing Ania how to look at the letters and tell us what she saw.  She started by doing the standard "eye chart" test where she was supposed to read the letters or a little picture of an animal from across the room.  She did great with both eyes uncovered.  The doctor then put an eye patch over her left eye. Ania recited what she saw like a pro.  The doctor then switched the patch to the right eye.  Ania just started saying "Ummmmmm....ummmmm" and thinking very hard.  She then started reciting letters- and not the ones that were being projected! She knew she was supposed to say something and to cover herself she just started rattling off numbers! While I admired Ania's perseverance, I had a sinking feeling...She could not see out of her left eye.....

After examining her eyes with all sorts of gadgets and lights and eye dilation, I finally asked the optometrist what she thought it could be.  I think her answer was just wishful thinking- and I can't blame her.  She said she thought maybe a childhood cataract but she would like to send me right away to a Pediatric Ophthalmologist.

We arrived at the Ophthalmologist around 1:00pm and were rushed back to meet Dr. Hare right away.  She entered the room and took a pretty quick glance into Ania's eye with a light.  Immediately she looked sort of frightened and sat back in her chair. "It's not a cataract is it?" I asked.  She shook her her head and said "No, I think it is Retinoblastoma."   I started to cry. Dr. Hare handed me a tissue and left the room to make a few phone calls.  I hugged my sweet little girl until she came back in. Dr. Hare returned looking like she was about to cry too. She said, "If this was my child, I would go to retinal specialist Dr. Michael Shapiro. He is THE guy for this type of thing. He is expecting you so go now."

I swung by our home to pick up Mike (who left work early upon hearing what was going on) and Kellen. Mike and I paused and gave each other a big hug before getting into the car. It was comforting to me to not have to face this final stop on our "diagnosis tour" alone and he of course wanted to be there for our girl too.  My mom also got into her car immediately to meet us at Dr. Shapiro's office so she could wrangle our wiggly 10 month old while confirming the diagnosis.

We arrived and her eyes were once again dilated ( 5 times in one day!).  Dr Shapiro came in and did the same examinations that the others did, looked in her eye and confirmed it was indeed Retinoblastoma. He asked my mom to take Ania out of the room so he could discuss what our plan was to be.

It is VERY surreal to be sitting next to your spouse, holding hands and hearing a doctor tell you your child has cancer.  He explained that basically it was a tumor on the retina of her left eye.  He hoped that it was just contained within the eye, but we would have to do further tests to confirm that.  Retinoblastoma is a rare childhood cancer that only happens to 200-300 US children a year. Not a club that most parents and children ever belong to thankfully. Once he had the confirmation that it was just in one eye and that it was contained within the eye, we could move forward with treatment. We scheduled 2 procedures where she would have to be put under so they could do an in-depth examination.  One piece of hope about Retinoblastoma is that it has a very good survival rate - over 90% if detected early, and the doctor gave us good props for acting on our instincts to get this checked out and acting so quickly.

Tuesday October 29th 2013: We brought Ania to Lutheran General Hospital in Park Ridge where Dr. Shapiro works out of.  Her procedure was scheduled for after 3:00pm and the poor little thing could not eat for 8 hours prior due to anesthesia.  She did remarkably well on that front. I think most 3 year olds would have put up a fight, but my dainty warrior understood somehow...

Waiting..a little scared...

My mom, Julee (known as Mimi to Ania), came with us and had the opportunity to be Ania's "best friend/playmate" to help keep her occupied.  It was so heartwarming to see the two of them play. I don't think Ania would have done so well without her.

Her Mimi is certainly special and a source of comfort for her! While we waited, Ania played "toss the tiger" with her little stuffed tiger named "Leap" and played with her toy retinoscope by giving us all eye exams.

Examining "Leap" the tiger

When it was finally time, they gave her a small sedative to keep her relaxed. After a few minutes and a very loopy Ania, they took her to be put completely under so Dr. Shapiro could do his extensive exam and take pictures.The procedure lasted a little over an hour. We finally ate some dinner while we waited ( we all fasted in solidarity with Ania) and I was very engorged since Kellen is still breastfeeding and I forgot to bring my pump along- oops! Self expression success in a bathroom stall for the first time (yay?)

Dr. Shapiro met with us after the exam and confirmed that the tumor was only in one eye. Very good news that it was only in one! He explained that pending the MRI scheduled for October 31st, we had 2 options for treatment.
1. Enucleation- removal of the eye.
2. Intra- Arterial Chemotherapy ( I will go into details about this in my next post)

Wednesday October 30th, 2013: Since Ania was scheduled for an MRI on the 31st, she would miss Halloween.  I put a simple post up on Facebook calling all mommy friends and kids to come on over for a pre-Halloween bash. My wonderful neighbors were prepared with candy for Ania and all 12 of her little friends.  The kids all had a blast even though it was pouring rain!

12 wet little trick or treaters! 

Thursday October 31st, 2013: Ania wore her witch hat and carried a broom into Lutheran General like the little warrior she is:

We met with oncologist Dr. William Goodell who explained the chemotherapy process.  We REALLY liked him!  He is very gentle and great at explaining the chemo process and side effects.  After that appointment, we went to Radiation department for Ania's MRI.  She had to be anesthetized again for the almost 2 hour procedure.  We were given a copy of her images and the tumor is very clearly seen in her left eye.  Its also clear that her brains look beautiful and no sign that the tumor has spread. :)

MRI - see that cloudy section of her left eye? 

Friday November 1st, 2013: Since the MRI of her brain was clear, we decided to go the Intra-Arterial (IA) chemotherapy rout.  The final doctor on our amazing team is radiologist Dr. Thomas Grobelny. He is the one who actually administers the chemotherapy drug (Malphalan). He is a pretty important guy considering the potency of this poison/wonderdrug that has the purpose of destroying Ania's tumor.  He was very confident, and even said this was an easy procedure for him to do in comparison the all of the other amazing things he is capable of doing.  He is a rockstar radiologist apparently :)

After our meeting with Grobelny, we made arrangements for Ania's first chemotherapy treatment to be Wednesday November 6th.

At the end of a very long week, she still managed to dance on Friday evening!

So, that's it. In a very large nutshell, how we learned our daughter had cancer.  My next post will be all about her treatment, side effects, and expected outcome. Thank you if you sat and read this very long post - it felt good to get it all out :)

God Bless,
Erica