Tuesday, November 12, 2013

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,


  1. You are amazing! ((hugs)) she is in my prayers as are all of you. Dance Ania..... Dance!

  2. I cried as I read this (I followed your link in the Rb moms group and wandered on the blog ;) ). She’s a beautiful little girl. I love the paintings (on the other post). Continued prayers for her and your family as she goes through treatment.

  3. I "liked" your Dainty Warrior page a few days ago, and I am so touched by Ania's journey. I am praying for her and hope better days are ahead for all of you.