Tuesday, September 24, 2013

I can’t believe how long it’s been since I’ve posted. The girls are doing great! They love school! It’s amazing to be experiencing a “normal” life this year. The girls are enjoying a ballet class this fall, playing on a soccer team that Jeff and I are coaching, and going to school a few days a week. I’m back to work and am really enjoying getting to know my student this year.

I’d like to say that that’s it, that we’re done, that we’re normal (without the quotes). But, it’s September and that means it’s Pediatric Cancer Awareness Month and I owe more than that to all the kids fighting this disease. I think that’s why this post has been so long in the waiting. I just don’t know what to say.

I feel this weight hanging on my shoulders all the time. I hate this month, I hate knowing what I know, I hate not being able to ever forget, I hate not ever being free. I feel like I have uncovered a truth and I can never go back to not knowing. There are very few times in your life when something changes you so profoundly. The rose colored glasses are off, the blinders are gone, and I know the truth of pediatric cancer. I feel like I’m in the middle of a whirlpool and I don’t know which way to swim. Cecylia is cancer free and happy. But, this month it’s the job of all cancer moms to spread awareness about this disease. And, it’s exhausting to try to share information about pediatric cancer because I have to stare at these statistics and know that they are real. Some of the statistics are things that we’ve experienced, like the frequency of diagnosis and the percentage of kids diagnosed at advanced stages. Some are statistics that I hope to never have Cecylia experience, like information on the side effects of radiation and chemotherapy drugs.

But, I don’t want to stop. I want everyone to know about this, I want to do something (anything) to make a difference. If it’s raising money for research or just posting facts and information on Facebook – it really doesn’t feel like I’m doing enough. I see others doing so much, and yet I feel like I’m treading water. I’m overwhelmed by emotions. It’s so hard to keep my different realities of life separate. I have my pre-cancer memories that seem so long ago. My during cancer memories that are surreal because it doesn’t seem possible for all of that to happen to my little girl. And, my off treatment experiences that leave me feeling inadequate at all times.

This off treatment stuff is crazy for me right now. Here’s why:
1. Why do I keep talking about “me” and “I” – this happened to Cecylia! I didn’t have cancer, I don’t know what it feels like… Who am I to keep talking about how this affected me?!?
2. Here I am feeling bad for what happened to Cecylia in the past and what could or could not happen to Cecylia in the future while there are kids in the middle of the fight of their lives. Some are new diagnoses, others are relapses, and still others are dealing with terrible side effects from the treatments that saved their lives.
3. Similarly, but more heart-breaking, how can I dwell on the past when Cecylia is doing so good and other kids have lost their battle with this awful disease?!?
4. I never question why this happened to me. I’m a grown-up and bad things happen to grown-ups. I’ve always just figured that I was meant to be Cecylia’s mom, because God knew I could do a good job. I’m good at advocating, staying organized, and getting stuff done. I’m good at problem solving and I feel like I’ve done a good job of taking care of Cecylia and Ainsley this year. What I do wonder and question is: why Cecylia? Why does this sweet child have to go through this? Why do any of these kids have to go through this?

So, I feel like a selfish heel when I feel sorry for myself for having to carry around this weight that never leaves me when it’s the pediatric cancer patients that have to bear the hardest things.

I want to end on a positive note and bring the focus back to how happy Cecylia and Ainsley have been in the last month! They are loving life and are acting like normal kids – playing like best friends, disagreeing like only sisters can, acting sassy, and being the sweetest little girls all at the same time. I am so thankful to God that Cecylia is healthy and I want to remember to just enjoy the present.

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Wednesday, August 21, 2013

It’s been a week since Cecylia’s port came out! She’s doing so great. She had no problems with the pain and I struggled to keep her activity down while she healed. She’s just playing, running, jumping, you can’t stop her. She feels good, emotionally, too. I didn’t realize how much she thought about her cancer. It seems, from her reaction and words, that this port removal really signified her healing. She’s been showing everyone, and I mean everyone, that her port is gone. Even a cashier at Target got to hear, from Cecylia, that, “my port is gone and I don’t have cancer anymore!” It’s been really great to see how good she feels.

I was just talking to my mom tonight about how I feel. I feel really good and am in a good place, emotionally, as well. Maybe it’s contagious. As I’ve said in earlier posts, I will always have a nagging at the back of my brain, but I’m doing a good job of staying positive. I think it would be naive to NEVER think about Cecylia’s future in terms of the challenges she may or may NOT face. But, it would also be silly and unfair to ONLY think that way. I would say I’m 90/10 when it comes to positive versus negative thinking. I feel good about that ratio, I think that’s pretty healthy (if I do say so myself)!

I’m off to work tomorrow to start the beginning of the school year stuff. Usually, that would be a reason to be a little sad. Saying good bye to lazy summer days with the girls! But, this year is so different. Last year, we were getting ready for Cecylia’s lung surgery, facing so many unknowns, and feeling so many fears. This year, we are gearing up for preschool, soccer games, and ballet lessons! What a difference a year makes. I’m so thankful to God for the many blessings we have right now.

Please keep praying that Cecylia stays cancer free. Please also keep all the other cancer kids in your prayers: the ones still fighting, the ones in remission, the ones just being diagnosed, the ones fighting side effects from treatment, and the siblings of all the cancer kids, too!

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Tuesday, August 6, 2013

It’s been a while since I posted. Here’s where we’re at… Cecylia is doing really well physically and emotionally. Her CT from being three months off treatment was great and she continues to be cancer-free! Praise God!

She and Ainsley are doing really well emotionally. They are having a really great summer! Both girls are gearing up for preschool, Jeff and I will be coaching their soccer team this fall, and I’m trying to see if we can squeeze in a dance class for them because it’s something they’d really like to try.

Cecylia started taking bactrim again. That’s an oral antibiotic that helps to prevent pneumonia. She used to HATE to take this when she was first diagnosed. She would spit it out, scream, cry, it was worse than giving her chemo! Now, she’s taking it without much fuss. She doesn’t love it, but the alternative (and what she did when she was in treatment) was taking pentamidine through her port once a month. This was fine when she was on treatment, but we’d really like to have her port removed. It’s just one less thing to worry about. Because of the port, if Cecylia gets a fever we still have to go to the hospital to make sure the port is not infected. With her first school existence on the horizon, I’m sure she will be exposed to lots of germs. So, since she’s taking the bactrim, she is scheduled to have her port removed on August 14. It’s a small surgery, but please keep her in your prayers that day. Also, pray for all of those that will be taking care of her. The procedure will be done at Mott Children’s Hospital. It could be done at our local hospital, but I wanted the surgeon that started with us at the first biopsy and has done all of Cecylia’s other surgeries to be the one to remove the port. It seems fitting, emotionally, and I just feel comfortable with this surgeon. This surgeon used to operate out of both Mott and Beaumont hospitals, but now she is only available to us at Mott. I will update everyone about how this goes. Thank you all so much for your love, prayers, and support. I’ve been reading my old posts and I can’t believe what a journey we’ve been on. I know we couldn’t have gotten through it without our amazing family and friends!

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Thursday, July 25

Best news ever! NED, no evidence of disease! Nothing new in the CT scan and the spot they think is a hematoma has gotten smaller still, so that is further proof that it is nothing to worry about!

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Thursday, July 4

I’m laying next to Cecylia as she sleeps. She had a bad dream around six, this morning, so I crawled in next to her and she went back to sleep. This has been a weird time of year for me. We are getting closer and closer to Cecylia’s cancerversary. July 12 is just a few days away. Today is poignant, because we always celebrate the Fourth of July in our city in a big way, so my memories of this day stand out a little more. Our city has kiddie parades, big parades, a fair, and big fireworks. I think about last year’s celebration and where we were. Cecylia had a fever the day before and I let all the other parents know, because I figured it was another virus. But, she woke up on the 4th feeling fine. She had no fever, and had a great day with her friends. They were running, playing, jumping on our trampoline, and sliding into our little pool. I remember when she was diagnosed thinking about everything she did this day, with that tumor inside of her. It’s a catch 22 with kids. They are so resilient that they can fight this disease so much better than adults. But, because of this same resilience, Cecylia was playing like normal with undiagnosed stage 4 cancer. I try not to think about the signs I missed and how we could have caught this earlier, because it really doesn’t do anyone any good.

I am so happy right now, that both my girls are happy and healthy. I don’t take a single thing for granted.

But, here’s the thing, I never took it for granted. I didn’t learn a lesson this year about appreciating life. I already knew this. It took us four years and a surgery on my uterus for me to get pregnant with Cecylia. The awesome news about expecting Ainsley exactly a year later was not lost on me. I was so grateful to be able to have a family. I was so thankful to God. I didn’t need cancer to teach me how to appreciate life. I remember being so happy last Fourth of July. We had a party, the girls played with their friends, they loved the fireworks. I don’t know why I remember last year so well. Maybe it’s just because it was right before diagnosis. I just remember loving my life – my little family – and being so thankful!

But, then cancer came. It almost ripped my baby away from me. And, this year, I am thankful and grateful, especially to God, for so many different (and same) reasons as last year. First, I’m just happy Cecylia is here and she made it through everything. I’m also grateful for how well the girls are doing emotionally. They are both so happy and playful. They are growing up physically, developmentally, and emotionally. I’m so proud of them!

But, here’s my secret…because I’ve always wanted this blog to let you all know a little of what it’s like to battle cancer with your child. I’m so scared! Everyday, so scared! You see sometimes I get comfortable with cancer being in our life. I see Cecylia growing and healing and I think, “Phew, she beat this, she really did!” And, that’s when I get scared. If cancer could come when I was in a place last year of really appreciating life, what could it do when my guard is down. I know this isn’t how it really works. But, this is how my brain is working right now. As soon as I start to think things are good I worry that something bad is going to happen again. Like, if I worry about a relapse, then it won’t happen. And, if I let my guard down, something bad could happen again.

Now, I know this is not how the universe really works! I know that I have to enjoy the little moments! And, I do enjoy them, I really do. But, the worry is never going to go away. Once cancer hits your child, it never goes away. It’s not over for us. We have FIVE years of scans before Cecylia is cured. That’s five years of worrying every three months that something has come back. There is a lifetime of side effects to worry about and look for. We won’t know what puberty or fertility will be like for Cecylia because the radiation to her abdomen was right by her ovaries. Not to mention, the long term effects of chemo.

But, today I am more than grateful. Words can’t express how happy I am to be laying next to my baby girl as she sleeps. I’m going to enjoy the day, the moments, and have a great day. I will TRY not to worry, but that’s the best I can do. :)

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Wednesday, June 19

We are on vacation! It was Cecylia’s wish for her and her sister to go to Disney World and meet the princesses (especial Merida). We are at Give Kids the World Village courtesy of Rainbow Connection and are having a wonderful time! We got here yesterday and we were at the Magic Kingdom today for a lunch at Cinderella’s Castle! Tomorrow, we have a special meet and greet with Merida. The girls are having a blast!

P.S. I always feel like I need to add this, because you always read about not putting your vacations on the web – so, we have a house sitter and a guard dog at home right now! :)

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Thursday, May 30

Things are chugging along. I am back at work and really enjoying it. Of course, it helps that there’s only 11 school days left before I’m done for the summer. But, it feels really good to be back with my students. Cecylia and Ainsley are totally fine with me working (I don’t know if that makes me happy or sad!). Of course, it helps that Jeff is home with them during the day. He arranged his schedule to work all nights. So, we don’t see each other, but the girls are happy and that’s the most important thing.

The girls are doing great right now. They are just happy healthy girls! Cecylia is continuing to gain weight and strength. We just found out yesterday that she will be finished with her occupational therapy soon! She has gotten a lot of her strength back in her arms and hands. She will continue with physical therapy through the summer and then be reevaluated. She has nerve damage in her ankles and needs to continue to work on getting stronger. All in all, she is moving right along.

Please continue to pray for the emotional well being of my girls – I am so happy with how happy they are lately. And, of course, please pray that cancer never comes back!

I send my love and thanks to you all! I will keep posting happy (boring!) news about the girls every once in a while. I’m so thankful we had so much support in the hard times – I hope you don’t mind if I keep sharing during the good times. I think you all deserve to hear the good stuff after helping us get through the tough stuff!

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Thursday, May 16

Cecylia is doing great! We went to Mott on Tuesday for Cecylia’s follow-up concerning her heart. She does not need a pacemaker – yay! She doesn’t have any symptoms, so there really isn’t anything they need to do right now. They did an EKG and we just finished a 24 hour heart monitor so that the doctors at U of M could see how her heart does over a day. She has no physical restrictions.

Cecylia has been getting stronger, more energetic, and hungrier with each passing day! I think she out-ate Ainsley (and that’s saying something)!

Phew, it’s crazy to finally be on this side of the journey. I felt like we’d never get here, but here we are! I’m going to start back to work after Memorial Day, and finally get back another piece of my “normal”. I was going to go back this week, but then the heart questions popped up and the first appointment we could get at Mott was for this week. I wanted to make sure we were past all of that and any possibilities of a procedure (and healing time) for a pacemaker.

I had a really reflective moment today. I cleaned out my closet (literally). This was the place I’ve been keeping things since Cecylia got sick. I looked through all the cards that I saved (I saved them all) and had a big cry. It was unreal to read the cards from when she was first diagnosed. I cannot believe how far we’ve come. I was a totally different person then. I just want to say thank you to everyone that supported us in any way! Your kind words, prayers, meals, care packages, and financial support really made this horrific experience bearable. You really have no idea what a difference you made in our lives! People ask us how we did it, but we made is through with the grace of God and the support from our incredible network of friends and family. Thank you a million times over.

Now, my nightly prayer is that Cecylia never has to face cancer again! I also pray for a lot of you that I’ve connected with along the way. When I see a call for prayer on Facebook, I take it seriously, because so many of you have done that for my Cecylia! So, please know that I pray and thank God for all of you daily.

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Wednesday, May 8

Awesome phone call today! The surgeon started with, “It’s all good news!” I really just want to thank God for this moment. I am so happy for my little girl! I have been praying for her healing, but also praying for the Lord to work through modern medicine and doctors.

The doctors are satisfied enough with these last scans, that Cecylia does not need any more imaging until August. There was a time when they wanted to follow up with an ultra sound in June. I asked a lot about this, but the surgeon that she has at U of M is considered an expert in the United States at dealing with Wilms tumors and he feels that it’s not necessary. Actually, they even said that they could remove Cecylia’s port before her scans in August! Cecylia currently takes an IV medication as a preventative measure against pneumonia, so if we can get her to start taking the oral medication the port can come out!

The next thing that needs to happen is her follow up concerning her heart rhythm. We have an appointment at Mott later this month to ensure she doesn’t need a pacemaker and then we can breathe! The doctors are pretty sure this won’t be necessary, but I am waiting to get past this last thing before heading back to work.

I’m not worrying about this appointment tonight, though. Tonight, I am enjoying the good news that Cecylia is cancer free! Please keep praying for no pacemaker and no cancer EVER :)!

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Sunday, May 5

We had an awesome day at Greenfield Village today. I’m still a total germ-phobe (I was long before Cecylia’s diagnosis and will continue to be one as she continues to get healthier), but it was so nice to not have to worry about any counts as she did different activities today. Not worrying about low platelets or neutrophils was so nice!

I will also say that this cancer experience has changed me as I am out enjoying life. We were at an event today with tons of families and I found myself noticing things I wouldn’t have before: an autistic child struggling on the carousel, a little girl in a wheelchair, a little boy with hearing aides, a young girl who’s hair was growing back in (her sister and mom had long hair and hers was super short under a ball cap – not sure exactly what was going on). I am a teacher and I grew up with an aunt that was impaired (and with an awesome grandma that raised my Aunt Diane in her home at a time when people just sent relatives “away”) so I’m not sure if I would have completely missed these families with special kids before, but I definitely noticed and reflected on it today.

I never try to compare different experiences in terms of what’s worse or harder, because you really can’t compare people’s experiences or know what life is like for others. But, it was interesting to think about other families having problems that they needed to overcome just like us. It’s hard no matter what obstacle is in your child’s way, but we are all just trying to help our kids enjoy life on a beautiful spring day! This experience has made me super paranoid and scared all the time, but it’s also made me appreciative of just how precious life is!

We are still waiting to hear back from the surgeons and what their opinions are of the spot they are watching on Cecylia’s CT scan… so please keep praying that they are happy with Cecylia’s results!

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