Chemo Cycle 1 Summary

Sending love to family before we left for the hospital...

We arrived at LGH 1:00pm on Tuesday April 8th. We spent a good amount of time with the child life worker (Kevynne is great! Thank you!). She played with Ania and brought her a doll that had a port so she could show Ania what it was like. We had a bit of a wait- did not go in until 4:00pm. Ania did not complain once about being hungry or thirsty ( she had not eaten since 9:00pm the night before!)

Learning about her port

Ania and her cancer kid doll friend....

She went in and we had our wait time. I worked on my attempt at learning to knit- it's turning out to be a long..."colorful something". It's nearly the length of my thigh. If anything, it's a record of the time spent waiting for my daughter.....

They did the surgery to place her port in her body first. The port is so they have an easy access point for chemotherapy and blood draws. After, they did an MRI of her brain to be sure it is clear of any tumors (she has not had one since last October).

They brought her to recovery and then admitted her straight to the pediatric floor for our stay. Her chemo infusion did not take place until 11:00pm. 

Post surgery, before chemo half smile & snuggles with daddy.

The next couple hours were very nerve wrecking for me. I couldn't believe she was going to be having 3 chemo drugs infused into her little body. I had to stay strong but I just felt like crumbling. At 11:00pm, Ania was getting sleepy and the nurse dimmed the lights and hooked the meds up to the machine. I sat in the chair next to Ania's bed and cried quietly. I'm sure seeing it happen will get easier over time, but this first time, was just hard. Rather then stay up and watch as 2 other drugs were added to the mix, I decided to put my emotional mind to rest and get some sleep. Ania was already sleep anyways.

We slept soundly until about 4:30am. That's when the nausea kicked in for her. From about 4:30am until 11:00am, she threw up every half hour or so. Her smile was non-existent during that time. 

My mom and I lost track of how many times we changed her sheets due to the sickness. She went through so many sets of hospital pjs that they ran out for a period of time. The zofran was not working for her so they gave her some benedryl to try to help stop the sickness. At 11:00, she finally started to appear better. 

Around 12:00 we busted out of her room and went to the playroom. She enjoyed playing instruments and riding a little toy car around the hallway. 

In the afternoon, she had some special visitors!

Cinderella, Aurora, & Ariel came to lift her spirits!

Her next and final round of this first cycle was scheduled for 8:00pm so we had to stay another night. My anxiety was a little less thanks to a break from the hospital and a quick trip home for a run and a shower. My mom stayed with her for a few hours- she rode that little pink car around the halls practically the whole time! I returned right at 8:00pm. 

The chemo bag made me think "green ecto juice" (from ghostbusters) was being pumped into her veins. Shortly after the infusion began, she fell asleep.

I followed suit not too much later. Once my head hit the pillow, I barely moved until my mind woke up at 5:00am. I looked over at Ania and she was still peaceful- no sickness this time around! 

She awoke feeling well and we were able to leave around 2:00pm. 

Oh that smile!!!

She rode that little pink car to the exit door- Freedom!!

So we are home. Home feels wonderful and it is a beautiful day to step out and enjoy some emerging flowers! 

And play with little brother

And of course have lots of mama & baby snuggles!

 

God Bless,

Erica

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