To Be Continued.....
Saturday, April 26, 2014
Wednesday, April 23, 2014
It's begun. The shedding. It's real now. Yesterday I noticed a little bit of hair loss happening. This morning when she woke up she was covered in it. She came into the kitchen and there was a "tuft" on her shoulder.
I didn't sleep well last night and was tossing and turning about how to approach this with her because I knew she would notice soon. I had decided I was just going to be real with her. Tell her about cancer and how we are making sure she stays healthy for a long time to come. We really haven't used the word "cancer" with her since her diagnosis last October. It's always been about her " broken eye" and how we were trying to first fix it. Then we couldn't fix it so we had to remove the " broken eye." Now that the eye is gone we are left with trying to explain a very complex situation to a very young girl. Why not just call it like it is with her? It's cancer. She may be young but she is a very intelligent girl. It's cancer honey, and we need to make sure it's all gone so you can be well again.
Back to this morning, she saw me brushing the bits of her golden hair off her shoulders and back. She said she had some in her mouth. I picked off a tuft and she asked what it was. I told her it was her hair falling out due to the medicines the doctors were using when we have to go to the hospital. That it was just part of what needed to happen to make sure she would be all better soon. She looked sad and whimpered a bit so I asked if she needed a hug. She said yes and we sat together on the kitchen floor hugging for a good 5-10 minutes. Not saying much other than how much I loved her and her family and friends loved her.
It was a simple but life impacting explanation we shared. The truth was unveiled to my dear child. I can't even imagine what that makes an almost 4 year old think. I WISH her life was all about enjoying little simple stories like Goldilocks and the 3 Bears. It's not. Instead it's a story where a little girl with golden hair loses her locks and an eye to a monster called cancer. Sure, she will eventually win but I can't help but fear for her. I will just keep trying as hard as I can to show her I love her and to be strong- even when I ask her to do things she hates to do- like take her medicine or get her "pinches."
Keep her in your thoughts and prayers as she sees this transformation happening. Grant her understanding and hope that in the future that most of the hard times of discomfort, anger and fear are forgotten. This is happening. Do not look at her and feel sorry for her. That only frightens her. Look at her for who she is- just Ania. Comfort her if she asks for it and give her space if she needs a moment. There is a lot going on behind this smile- and it's a very heavy weight to carry for such a dainty, yet still mighty girl!
Sunday, April 20, 2014
Happy Easter to all! Just a few snap shots into the last few days.
Making "Lizards on leashes"
And Easter Sunday-
A nice walk to church where Ania proclaimed she was the "Easter Fairy"
Wednesday, April 16, 2014
Ok so Yesterday's post was pretty sad. I was feeling drained and emotionally raw. I'm feeling a little better today and captured a few "moments" to share. Some happy, some still a little sad but, our reality.
Thanks for all the prayers, inspirational and motivational thoughts. I will be ok. Ania will be ok. We both will have bad days. And we both will move on. Moment to moment indeed.
We had another lovely morning at the Chicago Waldorf School parent/child class. Ania was feeling happy and had fun building forts and decorating wooden eggs with beeswax for Easter.
In the 3 hours she napped, Kellen and I had to stay busy.... So we played.... And made silly faces together. I love this little goofball so much! He is such a ray of sunshine in the darkest of times!!
Ania woke up pretty rejuvenated but with a slight fever. She perked up after a snack of apple slices and even got in some funny faces.
Her daddy came home from work and she was thrilled to see him ( so was Kellen). They wouldn't let him put them down :)
She actually ate dinner with us tonight- first time in a week as she has been saying her tummy hurts and that she just doesn't want to eat. After dinner We danced and smiled and my true Ania was present this evening. It was lovely!
Tomorrow we will probably take it slow and maybe pick the paint brushes back up again as she took a break from that too the last few challenging days. There is a shark & scuba diver just waiting for their colors!
Monday, April 14, 2014
Yes being a parent is hard. As soon as you learn you are going to be a parent, You start to love harder and more deeply for another human being than you ever imagined- you also FEEL deeper for this person that you are both in love with and responsible for. I literally feel pain when I hear my daughter cry out. I feel pain for her when I see her telling doctors and nurses to leave her alone. When she cries the words "that's enough!!" during an exam, want to scream "that's enough!" out loud with her. But I can't. I must hold my head up high, bite my lip and draw back the tears.
All of this "strength" I must have for her is wearing thin at times. I feel the joy being sucked out of my life when I see her flinch. I struggle to hold in my fear and keep my anger at our situation from exploding and projecting onto others. I don't have time to care for myself like I like to. Recently Ive felt so unhealthy- mentally & physically as Ania's health has taken priority. No one ever really tells you what it's like to suffer through the forced strength you must carry during your child's cancer. There is no other choice. We "warrior parents" may appear strong, capable and resilient but sometimes we crack and lose sight of who we are. But that forced strength is powerful- and it pulls us along. I really believe faith is what makes up this strength.
With a cancer diagnosis and chemotherapy treatment, I naively expected Doctors and nurses to just take care of everything and for me to just be there to comfort her. It's not that simple.
I have to give her medications. Lots of them to keep her immunity up. Ania hates taking medicine. If fact she sometimes vomits when I try to give her all the prescribed medications she has to take now that she is on chemotherapy. Sometimes she cries for me to leave her alone and says I am hurting her. Hearing that, just tortures my soul. I know she is not really in pain but I feel horrible. I watched as she screamed for the nurses to leave her alone while try to find her port hookup unsuccefully 3 nights ago in the ER for her elevated fever. There is still no explanation for the fever she is experiencing. Blood labs appear normal. Sometimes the fever disappears for a few hours and then just comes back with a vengeance up to 103 degrees. Her personality changes and she is not happy at all. My poor girl is robbed of her sparkle and joy. And so am I.
Just when I feel like I want to bury myself in my bed and hibernate, her fever will break and she will smile again. Today after 2 challenging doctor appointments, she was smiling again. It was 5pm and she has a ballet class on Tuesdays at 5:30pm that she goes to when we can. She brought up her dance class and said she wanted to go. She was so excited and I knew it was a fleeting moment so we quickly put on her leotard and got to class a few minutes late. She hasn't been to class in weeks. It was not evident! She jumped right in and didn't miss a step! As we walked to the car after class, she said to me "Mommy, I love you"
That's just what I needed. Thank you Ania for that little gift of words.
However, as soon as we got home, her demeanor changed. Her fever jumped back to 102 and medicine time approached. I was back to enemy #1 as i tried to coax her to take her medicine and take a bath. Sigh...
You know the saying "One Day at a Time"..... Well, my life is "One Moment at a Time." I'll take the good and revel in it while it's around. That will hopefully keep me charged up with enough positive energy and faith to get through the bad.
Friday, April 11, 2014
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.
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.
In the afternoon, she had some special visitors!
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.
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.
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.
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