Round 3 Wrap Up

In the morning we arrived a little earlier than the last 2 times for Ania's exam and chemotherapy treatment. There was initially some doubt that her treatment would take place because in the last 24 hours she had a fever, cough and beginnings of a cold. The anesthesiologist decided to ultimately move forward considering this was no ordinary procedure but more of a life saving one and considering it was due to time of year (cold and flu season), it was best to proceed. I was thankful because I was mentally prepared for today to be one more treatment crossed off our long list. 

She was given Versed (narcotic to relax) again which is always...fun... She hates the taste and tries to spit it out but man that stuff relaxes and brings out the comedian in her. I drew her a picture of a bumble bee while we were waiting to go back to surgery. After I drew flowers around the bumble bee, she would sniff them and tell us what the flowers smelled like. Her answers had us in stitches! There were hot dog, peanut butter and jelly, blueberry and pizza scented flowers! Haha! 

Stop and smell the uh... hot dog scented flowers little bumble bee ;) 

She went back for her exam and we went to breakfast and the waiting room for about an hour. Dr. Shapiro finished his exam and gave us his update. Basically, the big tumor is no longer a big mass but appears more "wispy". That is good. It is continuing to shrink. She does have still a lot of vitreous seeds ( basically mini tumors) that are floating around and they must be addressed at some point. Since they are floating around, it makes sense why some days her vision seems better than other days from that eye. The large tumor is out of her central vision but the seeds are not- therefore continuing to block some of that vision. The doctor is considering doing a cocktail chemo drug of both Malphalan (what she's been getting thus far) and introducing Topotecan which may help destroy some of those seeds.  We will learn more in the next few weeks of his plan.

She was given prednisone and Benedryl ahead of her chemotherapy treatment in hopes of avoiding the iodine allergic reaction that made last round so unexpectedly difficult. It seems to have worked as there was no complications this time and the Malphalan was administered successfully. Phew! 

We waited for her to come to recovery room. It's always so good to see her in there, breathing and relaxed! She was pretty drowsy and didn't want to wake up but we were transferred to our room for the night anyways.  She is required to lay flat for 8 hours after her procedure and today she slept through pretty much ALL 8 hours! She also had a little nausea/vomiting and 101.9 fever at one point but returned to normal once hour 8 rolled around. 

Pretty much what she looked like all afternoon.....

I got to snuggle and nap a little too :) 

After her 8 hours of naptime came to a close, she was ready and able to get up. We explored the floor and playroom of course- this time her Mimi got to stay the night and play too! 

Walking with Mimi

Hallway Hopscotch! 

First time at Foosball! 

So, Round 3 DONE! Halfway maybe? Hopefully! 

For now, good night from our hospital room! 

A sleepy Mimi & a wide awake, happy Ania! 

God Bless,

Erica

Preparing for battle!

This morning Ania went into her jewelry box and put on all her sparkliest pieces. She is preparing for battle! Tomorrow is round 3 and the Dainty Warrior lives up to her name :) Here she is flexing her muscles!

  

I will try to post tomorrow about the doctors findings and how the treatment goes. Pray for good news! 

God Bless,

Erica

Tabitha- Dainty Warrior A World Away

Recently, I learned of a little girl named Tabitha (also know as Tao Yi Li). She like Ania, is a 3.5 year old dainty warrior who was diagnosed with Retinoblastoma...and I cannot stop thinking about her. Unlike Ania though, she has no family. She is an orphan and lives across the globe in China. She was abandoned by her parents when she was just 5 months old on July 30th 2010. Police received a call about an abandoned, crying baby wearing "a pink dress and blue striped hat". Birth parents or other relatives were never located. Upon admission to the hospital, she was in good health but it was noticed that there was an issue with her right eye. It was unclear to the doctors at the time whether it was Retinoblastoma and it is also unclear why it took so long to do any course of treatment but she ultimately went through chemotherapy 2 years later in June, July, August and September of 2012. Even after the chemotherapy, it is decided that her eye must be removed to save her life. Tabitha's right eye was removed on September 20, 2012. 

I cannot get this dear little girl out of my mind because I just think about how she's been through all of this ALONE. Every exam. Every blood draw. Every treatment. Losing her eye. All with out a mother or father to hold her hand, comfort her, tell her that everything will be ok and that she must be brave.  I can only hope she had someone who cared enough to go through this with her in some capacity. I really wish I could travel across the world and be there for her.....

Meet Tabitha- Dainty Warrior of China! 

I say a little prayer for Tabitha daily and keep her in my heart everytime I've taken Ania in for a blood draw and witness my girl be oh so brave. I will certainly keep Tabitha in my thoughts as Ania undergoes her 3rd round of chemotherapy on next week (Dec. 30th). 

 I also showed Ania her photograph last week.  Immediately, Ania noticed her missing eye. She asked me her name and why her eye looked like that and I told her she was a little girl the same age as her and her eye happened to be broken like hers.  She did not seem phased by my answer and said "Doctors need to fix her eye like mine."  The next day, I noticed her drawing a picture of a person and asked her who she was drawing.  She simply replied, " the little baby with the broken eye."  Tabitha had quite an impact on Ania too! She drew Tabitha's brown eyes and one even appears to be smaller or "broken"! Again, I am in complete awe of my daughter's empathy and perceptiveness!

"The little baby with the broken eye"

Ania finished her picture of Tabitha with decorative stickers showing her dressed up fancy :) 

I share Tabitha's story with you because so many of you have prayed for us and sent us good thoughts and it has had such an impact on our strength and Ania's treatment.  It has allowed us not feel so alone in this battle.  I share Tabitha's story in hopes that maybe she will be granted the same kindness. And maybe, just maybe someone somewhere will make room for her in his/her heart and possibly life. If little Tabitha or Ania have impacted your life, feel free to share this story.  I am so very hopeful that Tabitha will have people in her life to call family soon.  Please contact me if you or someone you know might be interested in providing that for her.

God Bless and Merry Christmas,

Erica  

The Nutcracker Ballet

Yesterday was a magical day indeed! Ania and I left our boys at home to have a special "girls" day with her Mimi, Grandma & Marcie. After lunch, Daddy & Kellen dropped us off at the train station and we left the city for the suburbs for a production of The Nutcracker. She hasn't been on a train in awhile so it was almost a new experience for her.  She loved looking out the window of course and asked what the conductor was doing. As we were sitting there like 2 best friends chit chatting, it struck me how grown up she has become! This may be our first real mommy/daughter outing where I felt like I was enjoying her as a more mature person- not just looking after her as my " baby girl" if that makes sense. She is no longer a little baby for sure! What a little lady she is now at the tender age of 3.5!

Girls day! Mommy, Ania & "Rosie" on the train! 

She loved looking out the window and every stop she would say- "getting closer!" 

When we got there, she was excited to see Mimi greet us at the train station. We walked around downtown a bit and went to meet Grandma & Marcie at the show.

She could barely contain her excitement and pulled Mimi down the aisle to our seats! 

We had really great seats- Third row center! 

After the lights started to dim and music started to play, she said a few " ooohs' and "look at that!" And " that's my song!" It was quite adorable :) 

Clara and the Nutcracker Prince

She did so well and stayed attentive pretty much the whole show- until the very end when the Sugar Plum Fairy came on- Ania just wanted to dance too ;) 

After the show, Ania, the grandmas and I went out for dinner before we had to catch the train back to the city.  She was presented with a pretty ballerina nutcracker music box from all her grandmas to commemorate the special day! 

What a special occasion it is under any circumstance for a little girl to get to see her first ballet performance. For Ania, however, considering all she's been through, it's just been a little sweeter for all of us :)

After the show, waiting for the train home! A radiant, happy girl!

God Bless,

Erica

Oh- when we got home, she told Daddy " the show was not over yet" and did a recreation performance for him :) 

Magic of the Season

We've had a nice little break from cancer related "festivities" and have Christmas to look forward to! Just a few pics to show what we have been up to:

 

    

Decorating her felt Christmas tree and proud of the face she gave the tree :)

Holiday photoshoot- they are too cute!

Eating snowflakes- yum!

Making snow angels with little bro

Climbing mountains!

Making Christmas gifts 

Adorable felt and painted acorn ornaments we made! 

Visiting Daddy at work and the big magical tree in the lobby of Merchandise Mart

Ania is very excited for this weekend- as you may have gathered from previous posts, she is a big fan of ballet. This weekend Ania will be going to see a live performance of The Nutcracker with all 3 of her grandmas! I get to go too and am very excited and can't wait to see her excitement as we watch the dancers! 

So as Christmas approaches, make sure you step away from the chaos of planning,wrapping, family/life drama to appreciate the magic of the season. Try to see it through a child's eyes if you can.... 

God Bless, 

Erica 

Let it shine!

Today we saw the genetic counselor to find out if Ania's retinoblastoma case is genetic. They took a blood sample but we will not know the results for at least 8 weeks. Keep praying that it's not.....

On another very exciting note, we got some holiday pictures back from my photographer friend Eva.  She took an intriguing picture of Ania holding a string of Christmas lights. While we were choosing which photos to use for our Christmas card, we noticed in that specific photo of Ania, she is holding one tiny bulb up to her eye- her LEFT eye! The bad eye! The eye that she is blind in! This is very interesting because up until this point whenever she looked at things with her magnifying glass or through a toilet paper tube while playing "pirate Ania", she would only hold it up to her good, RIGHT eye! Interesting..... Was it just a fluke or was she seeing a little light again?!

This little light of mine.....can you see it??

While we waited in the genetic office today, I asked her if we could play a game of " How many fingers." Typically when I've asked in the last few weeks, she's said no. Today, however, she agreed to play. I covered her good right eye with my hand and Mike held up his fingers about a foot from her face and asked how many. She got it correct!! So, it seems maybe Dr Shapiro was right and her vision is returning! Part of me thinks it was just maybe another fluke but I am overjoyed that maybe it's more...... I'm sure we will know more after her next exam on December 30th but for now I am filled with such positive hope! Again, keep praying for this little light of mine :) 

God Bless,

Erica 

Strength in our Reality

Probably the comment I get most often from people is "You are so strong."  Let me let you in on a little secret- Yes, I am strong BUT I have moments of weakness. Taking showers have become my sanctuary- a place to cry alone when I need it. But I am strong most of the time because I HAVE to be right now. There are moments that I want to curl in a little ball and cry. At times Ive wished I was a grizzly bear so I could hibernate until spring. Other times Ive wanted to book an exotic world travel experience for myself to escape it all....

Reality is harsh sometimes. Sometimes you fall down. Sometimes you learn that people you love are not always who they seem to be. Sometimes you get disappointed. Mistakes are made. People have flaws. Crappy things happen. Your child gets CANCER....but Reality can be heartwarming too. People come out of the woodwork to help keep us strong. Hugs are powerful.  We've gotten countless meals, hundreds of letters and cards, car trunkfuls of toys and gifts for our little girl. She is also on prayer lists all over the world.  Lastly, reality can be funny too- I can't remember what it's like to go to the bathroom without one of my little ones coming with me to unravel the toilet paper roll or shoving their little hands under the door if I did happen to make it in alone. Funny reality is hearing your 3 year old telling you her boogers taste like strawberries..... And trying to keep her from sharing her strawberry flavored boogers with you....  ;)  

I guess my point is, until I was faced with this life altering situation I am in with my daughter and my family, I never knew I had it in me to be so mentally strong. What choice do I have though? I can not run away or hibernate . Life is moving and yes I will have moments of weakness but I will RISE to the occasion in due time. I'm ALIVE and I am going to stay true to myself in the mean time.  I'm going to pray- a lot for continued clarity and strength. I am also going to embrace everyone who has helped keep me strong and sane through all this. Lastly, embracing my husband and little ones is also important. We cannot lose each other in life's chaos. 

So I guess I am going to be like a grizzly bear who skips hibernation this season ;) 

God bless, 

Erica

Moments of Lightness Thanks to my Little Man

Today I put aside all the worry, anger, fear, and sadness felt in the last few weeks to celebrate our son Kellen. Tomorrow is his first birthday. Today we had his birthday party with friends and family. He has been such a shining light throughout this whole cancer experience and of course in the last year. Watching him grow and explore his world gives me such hope and a sense of peace. No matter what is going on around us, he is such a very bright and special little person whose existence gives me the desire to be the best mom I can be for him. Each little moment he does something that makes me smile, is a gift. I am greatful for the moments of lightness I feel thanks to my little man.

Newborn Kellen

Enjoy some highlights from our Nutcracker themed 1st birthday party today:

The sweets table

The big ONE cupcake

Sugar Plum Fairy Ania reaches for a sweet :)

Helping little bro with his cake!

Such a big boy!

Presents with Daddy

Post Party Pooped

Happy Birthday Little Man. Mommy, Daddy, & Ania love you so very much!

God Bless,

Erica

Round 2 Wrap Up

Last night Ania did pretty well. A little nausea but much better than anticipated. She stayed connected to an IV all night just to keep her fluids going due to the allergic reaction faced yesterday during her procedure. She did a little walking last night but was dizzy even though her blood pressure was fine. She and I snuggled in her bed and eventually fell asleep while watching Pinocchio.

A little bit of playtime while connected to her IV

 This morning she ate a nice pancake and fresh fruit breakfast. The doctor said she looked great and said we could be out before lunchtime :) 

We are just waiting for Mimi to come pick us up so we can get home to our beds and baby brother that we miss so much!

We are back to the weekly blood draws next week and all set for her 3rd treatment which is scheduled for December 30th. 

Oh! I failed to mention yesterday that since the tumor shrunk so much, it is no longer blocking her central vision! There is still some extra fluid in the way but the doctor said she may start to get some vision back in that left eye! Fingers crossed :) 

God Bless,

Erica

Progress with an Unexpected Battle

Waiting room artist

Ania went in at about 8:30 this morning for an exam and second round of chemotherapy.

Her friend Rosie waits....

After about 45 minutes, Dr. Shapiro came out to speak to us after his exam and was very happy about the progress that has been made. He thinks the tumor had shrunk by 50%!  He expects that a few more treatments will still be necessary though. He is focusing on destroying the big tumor right now. Time will tell if the "vitreous seeds" ( basically little spots that could grow into larger tumors) will need some special attention (chemo directly to into the eye ball itself). After his exam, Dr Grobelney could begin administering the chemotherapy medication. 

We were feeling pretty high off of the good news for a little while. One of surgical staff came in and said they were having a harder time inserting the catheder so it was going to be a longer wait. At that time we decided to nourish our bodies with food.

After we returned from our meal, Dr. Grobelny came to speak with us as the infusion was still in process. What had happened was today's catherization proved to be a bit more difficult for him.  At the conclusion of last month's procedure they saw what they thought was a bit of spasm of the artery. Just a little hiccup - all turned out well so there was no second thought or concern. 

Today, however, as the Dr. began to inject the dye (iodine based) in to the arterial artery to confirm placement, Ania began to experience an elevated heart rate, dropping blood pressure and slowed breathing. They now believe that what they witnessed previously was the beginning of an allergic reaction to the dye and what they were seeing this time was a full reaction. They treated her with steroids immediately which settled her back into acceptable ranges of her vitals.

In the meantime, Dr. Grobelny encountered difficulty with infusing the chemo drug due to poor flow pressure to the tumor through the arterial artery that is accessed through the internal carotid artery approach.

With that in mind, Dr. G decided to do a 2nd catheterization through the left femoral artery and the EXTERNAL Carotid artery (many branches that supply the face) in order to be able to place a balloon which would block those branches and create a back pressure that would then increase the flow into the tumor through the INTERNAL Carotid artery. I could imagine the wheels turning in his head as he was troubleshooting a way to deliver the necessary tumor killing drug to the intended site without harming any other structures in our precious Ania's face. If he didn't do such a great job thinking outside of the box, he would have had to abort the procedure!  Such a blessing to have this man and his God given talents as Ania's doctor

While the infusion was a success, we anticipate Ania having a more difficult recovery this time due to these complications. In addition, she had a bit of a "respiratory thing" which meant extra secretions in her trachea along with the irritation of the breathing tube so she will probably have more stomach upset in the next 12 or so hours. They gave her a breathing treatment which seemed to help clear her lungs a bit. Check it out- A dragon facemask to match the dragon tattoo she put on her arm last night ;) 

As we go forward with subsequent treatments, Ania will need to be treated in advance with meds (steroids and/or Benadryl ) to prevent another allergic reaction. It is unclear to me if she will have to undergo the dual approach for every chemo treatment in the future. One more hurdle but I hope we will jump easier in her future treatments.

Thank you for your continued prayer! I will keep you posted as best as I can. For now, the dainty warrior sleeps......

God Bless,

Erica