Monday, April 29

I don’t know how to start this post. I tried a couple different ways and nothing seemed right (it just kept feeling like I was whining about myself, when it’s Cecylia that has had to do the hard work). I’m really struggling right now with anxiety. I am so stressed all the time, I can feel it in my body. I am literally making myself sick with worry. I know I have to stop, but (believe me) if it was that easy I would have stopped by now. I am just so on edge about everything. She has her CT scan on Wednesday. We should get the preliminary results Thursday afternoon or Friday morning. The surgeons at Mott probably won’t be able to weigh in until the beginning or the middle of next week. Cecylia also has to have some specialists take a look at her heart rhythm. I haven’t mentioned it in a while, because the cardiologist hasn’t said much in a while. They just need to make sure the heart block (weird rhythm) is still not causing any other symptoms (fainting, etc) that would lead them to want to put in a pacemaker.

Cecylia, on the other hand, is feeling great! She is exited that chemo is over, having fun with her sister, and loving being a kid. She doesn’t have a care in the world – thank God!

Please pray all tests go well and please pray for peace for this mom – I really need them!

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Tuesday, April 23

Well, Cecylia’s viral swab came back positive for RSV (this can be much harder on younger babies, but for Cecylia right now, it’s an extremely bad cold) so we get to go home! The good news is that we get to go home and we know what’s going on. The not so great news is that there are no medications to help because it’s a virus. So, we just keep treating the fever with Tylenol. Her fevers are getting lower and less frequent, and when the Tylenol kicks in she feels ok. When the fever comes back she feels… well we’ve all had fevers and you just feel crummy. At least, we get to sleep in our own beds. We’ll be back at the doctor’s office on Thursday to check her out, check her counts, and give her pentamidine (the antibiotic she takes monthly to avoid pneumonia). Thanks for all the support. Please keep sending those thoughts and prayers for healing and that she is back to 100% soon!

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Monday, April 22 (Part 2)

After a dose of Tylenol, Cecylia’s fever is down. Once the fever was down, she was in great spirits. She was doing a project (you know she LOVES to do projects from morning, noon, and night when she’s in the hospital), watching movies, and making all the nurses laugh. They all just shower her with love and think she is just the sweetest kid. If only they could see the sassy girl we have at home sometimes :). No, she really is a great kid and I am HAPPY to say that she is acting like a normal, sassy, healthy four year old! Just wanted to update you all and let you know she is more comfortable now that the Tylenol has kicked in.

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Monday, April 22

We are at the hospital for the next 48 hours. Cecylia has a fever of 102+. They are doing cultures and starting IV fluids and antibiotics. They are thinking it might be a virus. We’ve all had a cold the last week. She’s been doing good fighting it, but her cough got worse today and this fever just shot up. She had a chest X-ray last week, but they are going to keep an eye on her lungs to make sure this isn’t pneumonia. Please send thoughts and prayers for Cecylia’s comfort right now, this fever is kicking her butt.

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Friday, April 19

Cecylia is doing well right now. Her last chemo was on Thursday, April 11 and she’s doing good. She had her counts today and she did not need any transfusions with this round of chemo. Our whole household is fighting a nasty cold! It’s the coughing, sneezing, congestion kind of cold. Ainsley and I seem to have gotten it the worst, but we are all finally getting better. Thankfully, it waited to hit us fully until after the girls’ birthday party! Cecylia had a chest X-ray on Wednesday because of her cough (and she needed one for her end if treatment tests) and they were clear, both of any possible pneumonia or any signs of cancer! So, that was nice to hear.

I truly believe that life is about balance and moderation. So, I am trying to balance being cautious about all these upcoming scans and being optimistic about Cecylia’s end of treatment. I am remembering to take it a day at a time. Some days I feel fine and, some days, I am still full of fear of relapse. Today was a good day, I was actually saying that to my mom as I was leaving Cecylia’s appointment. So, I will just keep taking it a day at a time. Please continue to pray for both girls as we navigate the post-chemo world. It’s been an emotional journey. Please also keep praying that the cancer NEVER returns!

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Thursday, April 11

What a day, Cecylia had her final chemo! I am so excited and proud of Cecylia and our whole family (both our immediate and extended families). We really pulled together. I am so thankful for our friends and community. So many people have come together to show support for Cecylia and our family.

This last chemo is interesting. I am seeing my little girl feel sick and tired one minute and then run around and play with her sister the next. That’s what is so great about kids. Adults would just be laying around feeling miserable, but she tried to keep going all day. We’ve never told her what “side effects” are, because kids don’t often experience all of them if you don’t describe them all. However, they do still hit her :(. It’s weird to have been on this journey. At first, watching the side effects just haunted me, then I had to just step up and be there for my baby, and on this final treatment the side effects are hitting me hard. I am watching her feel sick and just letting it all hit me. She’s felt this way 20 times! I feel like the weight of that is finally sinking in. I couldn’t let it before, because I would have been useless for Cecylia. But, now that it’s ending, I just can’t believe what this poor kid had had to endure.

I am scared today and I need your help. I have had so many prayer requests. Some were big, others small, sometimes the answers to these prayers were apparent, and sometimes not. Gosh, I have asked for help for my family, for her doctors, for the histology to be favorable, for her to not need open heart surgery, for the tumor to shrink, for fevers to go away, and the list goes on. Things did not always turn out how I wanted (she did need open heart surgery and she did need to be put on a stronger chemo protocol because her lung mets didn’t shrink quickly enough). Some things turned out better than I could have imagined (when her tumor could finally be removed in November it was 100% necrotic)!

Now, I have two simple prayer requests:
1. NO RELAPSE
2. Emotional healing for our entire family (especially Ainsley and Cecylia)

I know this journey is not over. There are going to be bumps in the road as Cecylia needs to continue to heal physically from all she’s been through. I want to thank all of you for following along, praying, sending food, sending care packages, messaging me, thinking good thoughts, etc. It has been so appreciated! It has been overwhelming to have such wonderful support. Thank you!

Next up, her CT scan on May 1. I will be updating you on her progress before then, but that is an important one. Please pray they find no evidence of disease and that the spot they are watching continues to shrink – that goes with my first request from above. Both of these things would mean the most important thing – NO RELAPSE!

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Friday, April 5

Wow! This is the longest I’ve gone without an update. Things are rolling along. Since my last update, Cecylia has had two fever scares, but they never got high enough to have to be admitted to the hospital. We are anxiously awaiting her last chemo on April 11. Cecylia turns four on Sunday and Ainsley turns three on Monday! I am so proud of both of my girls. They really are both so brave and strong. I’ve been working with a counselor to help with the emotional side of this and it feels good to be doing something about it. I have always tried to update this frequently, for two reasons. First, and selfishly, because it provides a great outlet for me emotionally. Second, I update it because I know you are all out here thinking of and praying for my daughter and I want you to know about the good and bad things as you follow her journey. I was thinking about why I haven’t posted and I really think that last CT scan took so much out of me… It was physically and emotionally draining. I have so many feelings right now, as we are coming to the end of treatment. I have heard so many happy stories of Wilms patients making full recoveries and so many sad stories about kids relapsing almost immediately. So, I am filled with hope and fear right now. That’s all I can say about that – it’s just too much to think about. As always, I am so thankful to those of you praying for my girl. Please just pray that she stays cancer-free!

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Wednesday, March 20

I received a phone call from Cecylia’s surgeon and everything is ok… The spot of concern is smaller then the CT scan six weeks ago. There is still no evidence of a blood flow, which is good because a tumor would need a blood source. It’s not conclusive or 100% that it’s not a tumor. But, just like last time (and even more so this time because the spot is smaller), it would not make sense that this is a tumor. Her histology is favorable, the pathology from her tumor removable showed that the tumor was over 99% dead. With this kind of positive reaction to the chemo, it would be odd for there to be new growth while she is still receiving chemo. The spot is probably a hematoma or seroma (basically a blood clot or some fluid accumulation). They don’t want to do a needle biopsy at this time because the spot is smaller and Cecylia is still on treatment until April. Cecylia is scheduled to have another CT scan in the beginning of May as part of her ending treatment. They will probably follow-up with an ultra sound a few weeks after that to make sure that this spot is still getting smaller once her chemo stops. Once she is done with chemo and the spot gets smaller (and it will get smaller!), it will kind of “prove” that this is nothing to worry about. So, this is good news! It’s still not 100% conclusive, unless they actually went in to check it out. At this time, they don’t feel like this is necessary. Even with a needle biopsy, they would still be using anesthesia and don’t want to put Cecylia through that since the spot is shrinking and all the signs show that this is probably fluid. Thank you all for the prayers and support – I really appreciated it all! So, we can breathe for now and will just continue to pray that the next CT results come back equally as good and eventually come back 100% sure that Cecylia is cancer free!

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Friday, March 15

Today is Cecylia’s next CT scan. This is a follow-up so that the surgeon can watch the spot that was a little suspect last time. The consensus after the last CT scan and ultra sound was that the spot was fluid, but it wasn’t conclusive, so we needed this follow-up so that we can get more information and see if there is anything else that needs to be done. Please pray that the results from this are that the spot is nothing and that it’s conclusive (so I can stop worrying)!

Cecylia was hospitalized from Monday through Wednesday this week for fevers again. All the viral and bacterial cultures came back negative, so she may have just had a fever because her neutrophils were nonexistent or she had a small virus that didn’t pop up on the viral check. Her fever was actually below the 100.5 limit our doctors follow, but she had a low grade one for over 24 hours and no neutrophils. So, the hospitalization was really just precautionary. But, better to be safe than sorry. She also needed another blood and platelet transfusion while she was admitted.

Please keep her in your prayers – I know you do – and send good vibrations her way!

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Monday, March 4

We are home! The girls are ecstatic, they just ran around and played and hugged all night. It was the sweetest thing. Inpatient chemo is a memory – one more thing off the check list.

Now, I want to share with you the reality of being a cancer mom. Inpatient chemo is not a memory for me yet. The nurses all congratulated us, sang songs, gave certificates and gifts…but I feel numb! I am numb with fear. What if what I am telling my daughter is a lie?!? What if the cancer comes back and we have more treatments in our future? I never promise her anything. I’ve read I am supposed to say things like, “we hope it doesn’t come back” instead of “it will never come back”. But, she’s three years old and thinks her days of inpatient chemo are behind her forever! What if she needs more, what then?

Now, listen, I know I have to stay positive and live in the present, blah blah blah! I do that almost all the time. But, I am being honest with you all right now, you can’t be like that ALL the time, it’s impossible. This cancer shit is scary! I tried typing crap just now and it doesn’t work. This shit is scary – day in and day out. I have faith in God and modern medicine, and I have all the hope in the world that, come April 11, Cecylia will have her last chemo drugs ever. I feel in my heart she won’t relapse. But, I am sure other mothers felt that in their hearts too! I have read that some call this survivor’s guilt – but I can’t help wondering, “Why will my kid be cured when others still struggle?” Then, I feel guilty, because Cecylia deserves to be healed so why would I think this way at all? Then, I remind myself that ALL of there feelings are normal. So, back to my original premise – this cancer shit is scary and is going to be scary for the rest of Cecylia’s life.

I wanted to share these feelings with those of you interested because having a kid with cancer is surreal. It never feels… well real. I still, after nearly eight months, have a hard time believing it sometimes. I know I am rambling. I always do when I try to share feelings rather than information. :) I always feel more comfortable sharing the details of Cecylia’s treatments, but I think it’s important for others to know the feelings that go with those treatments. The feelings are up, down, and side ways! They make no sense and all the sense in the world, all at the same time.

I am forever grateful that my daughter is doing well! I praise God for his healing of Cecylia. I am thankful to the doctors for all of their hard work in healing my child. I am thankful for the support of family, friends, and strangers that have become friends. Thanks for listening to me, supporting me, and letting me rant. It really helps me to get it out so I can leave all that here, and get back to living in the present and being positive for my girls! Most of all, thank you for praying for Cecylia and Ainsley!

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