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Ciara's Childhood Cancer Story

$11,705 of $15,000 goal

Raised by 110 people in 11 months
Created August 16, 2018
Fundraisers for Ciara
on behalf of Lesa Stutts
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This fund is for a precious little girl named Ciara. She is my sisters first born baby girl and she is only 8 years old. She is a big sister to Jaedyn and Joseph who are 7 year old twins and daughter to Jose and McKenzie Husing. A week ago she was a normal 8 year old girl excited about starting her 3rd grade school year at Allie Ward.

Her mom for the past 2 years has been begging for answers for this "bump" that randomly appeared and would not go away. It has caused this entire time horrible pain under her left knee. It has continued to grow and get larger but doctor after doctor, specialist after specialist they continued to misdiagnose her. They consistantly said she had Osgood Schlatter's Disease. My sisters motherly instincts knew that diagnosis was wrong. They have traveled to appointment after appointment looking for someone to listen and help. She finally found a surgeon who not only listened but acted. So on 08/07/18 Ciara underwent surgery to investigate this bump. When the surgeon started the procedure, he was expecting to find a basic small fluid filled cyst if anything at all. Unfortunately that is not what was discovered. A 3 cm mass was removed and sent for pathology to figure out what this mass was. This surgeon has done thousands of surgeries and has not ever seen the type of mass he saw in Ciara's leg which caused major concern. The very next day the suspected diagnosis results were given.

It was suspected to be a rare cancer called synovial sarcoma. As a family we were completely devastated because this was not what was expected. On Tuesday 8/14/18 at 3pm the final and confirmed diagnosis was given of synovial sarcoma and our lives forever changed. This is absolutely nothing that any family, parent or 8 year old little girl should ever have to experience. Ciara is now spending her days coming to term with this absolutely horrible and devistating diagnosis. Beginning at 8am the next morning 08/15/2018 3 hours away from home she had her first surgical oncology appointment to discuss options. Since that appointment she has consulted with multiple oncologists and is currently undergoing additional testing to determine what stage we are facing. Our family spends our days crying, researching and praying for answers to this rare cancer. Not only is this a rare cancer form of cancer but it is extremely rare in someone her age.

Ciaras mother is on an unpaid leave from her employer while she fights for her daughters future. This unpaid leave is a huge financial burden for this family. The last thing a mom and dad should have to worry about is how financially they are going to make these options available to their daughter. They are facing a very hard, long and expensive road which will consist of numerous doctors appointments, tests, and treatments. All of this is occurring a minimum of 3 hours away from their home and possibly further away as this battle continues. Ultimately the goal of this fund to help Ciara and her family make it through this tough time.

Every penny raised will go towards helping Ciara get the best treatment available regardless where it is provided and to keep their family afloat during this hard time.

If you can help at all please do ... no matter how big or small anything is helpful! If you cannot donate please help by sharing this message as well as continuing to pray for our family.

If you wish to follow her story you may follow on their facebook page The Husing Facebook   .

You are truly helping a family greatly in need. I will continue to update this fund along the way to show her progress. Please pray Ciara Kicks This Cancer !!

Thank you from the bottom of my heart and for taking the time to read this message!32185966_153447230083782_r.jpeg32185966_1534472328619698_r.jpeg32185966_1534472465484083_r.jpeg32185966_1534468762688238_r.jpeg32185966_1534468773649693_r.jpeg32185966_1534468787157365_r.jpeg32185966_1534468811862840_r.jpeg32185966_1534468822874649_r.jpeg
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7.14.19
(11 months post diagnosis)

We made it to the hotel in Houston late last night. We had to come in a day sooner to avoid driving in nasty weather from Abilene to Houston Sunday. It’s about 350 mile drive down here from Abilene and when the weather is yuck it makes the trip EXTREMELY long so we decided to go ahead and come yesterday. We will be here for at least 6 nights but we also have a busy week.
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It’s been a busy couple of months for us. First (before I get into the medical) Ciara had her Make-A-Wish trip to Florida in June. We had so much fun. We stayed at Give Kids The World Village in Kissimmee, FL and it was so amazing. The way they cater to the wish families is so awesome and I wish everyone could see it! If you ever have the chance to volunteer somewhere or are looking for a place to show support (like Make-A-Wish) I encourage you to check out GKTW. We also went to Disney World , Universal Studios and Cocoa Beach. Ciara had a BLAST! The weather didn’t really cooperate with our trip however we still had an incredible time.
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Now for the medical... Ciara’s knee has been feeling pretty good lately. We aren’t giving pain meds around the clock like we were. She has however complained that her knee is numb. I’m assuming it’s because she had another surgery in the same area on May 9th so what little sensation she did have I’m sure is gone now. But honestly, if it brought her ANY pain relief then it was worth it. I would rather it be numb than hurting constantly like it was. So to me this is a positive thing maybe not “good”but very little pain = good to this momma.
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She does however still have this bump/knot on her knee. The biopsy on 5/9/19 did not reveal sarcoma recurrence but it did reveal necrotic bone and tissue. Necrotic = dead. We’ve been trying so hard to not go crazy with this result and try not to dwell on it because we only know what this means when Ciara has updated scans. Chappie will be able to tell us more with these scans. We won’t know if her growth plate shut down for a few months when she hits 1 year post-op from Chappie’s first surgery which was 10-16-18. So please please pray growth plates are functioning, no recurrence, no rejection, no fractures and that we have no infection in her left knee.
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She has scans starting with a CT of her chest in the morning. I specifically ask you all to pray that this scan is looked at with a fine tooth comb and is CLEAR. I specifically ask this of you because Ciara has had this weird cough for about 6 weeks or so. Nothing really “concerning” if you look at just the cough itself and no previous sarcoma diagnosis because it doesn’t seem like she’s “sick.” Well once you’re diagnosed with sarcoma the lungs are very susceptible to metastasis. So of course my mind is going crazy worrying. I’m scared. So please just pray the cough is nothing more than allergies or something. She’s been on 2 rounds of antibiotics and even tried breathing treatments to see if it’d knock it out. No change. So Monday's scan is the one I desperately need them to say is clear and nothing concerning is there! She’s had a 2 mm nodule notated on previous scans but in March showed the same one being 3 mm. To a normal person you think “that’s growing” but to the doctor they say it’s stable and not concerning.
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For the most part Ciara has been in good spirits. Especially since we came home from Florida. ❤️ She’s even wearing shorts everyday! THIS. IS. HUGE! Her and I used to fight like crazy because she’d wear sweatpants everywhere, everyday and we live in TX. I read a publication on “desensitization” and how with children that’s one of the best ways to overcome fears. So Ciara and I everyday (and sometimes multiple times) we rub her scar. She'll come lay by me (and she loves me rubbing her back or her head) and instead I rub her scar. It only took a couple of days and then she started to do it herself. ♥️ I honestly think this is what has helped her not be afraid of her scar. She’s come a long way emotionally. So please keep praying for that improvement! Mental health plays such a huge role in the cancer world!!

Thank you for loving, praying and supporting our family! #teamCIARA forever - #CIARASTRONG
WWW.FACEBOOK.COM /teamCIARA
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Biopsy from 5/9/19 came back all clear! The last 6 days have been extremely stressful. First we had to imagine what it was going to be like if there was a recurrence and what they would bring to the table as far as treatment goes. Then when you look at the statistics for #synovialsarcoma relapse... I just couldn't imagine it. I couldn't focus on anything other than my baby. My heartaches for her. The fear and anxiety she's had since day one but especially in the past couple weeks.
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She made a promise to me the other night that no matter what the results showed, she would #NeverGiveUp #NEGU! That's when she sat down her crutches and walked down the hallway to the bathroom. She smiled when she got to the bathroom door and said "Momma it hurts to walk but I'm no quitter and when somebody is being #strong they have to #KeepGoing especially when it hurts." Yep, I cried that day because my baby shouldn't know what it's like to HAVE to be strong like that. But you know what I thank God that she understands what being strong is. Smiling through the pain. Pushing yourself when you just want to quit. Defying the odds & pushing the limits- THAT'S heart & the will to live fueled by the unfortunate #fear of a cancer diagnosis.
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She's sad about her new & bigger scar. This makes scar #3 for her poor little knee. In 269 days, 38 weeks & 3 days, 6456 hours or 387,360 minutes... however you want to look at it she's had 3 operations on her knee. Each time her scar gets bigger. She's just a little girl & shouldn't have to have these horrific scars. But to save her life, keep her safe & to be sure the #sarcoma isn't back, this is what we do. If you ever have a bump or pain that won't go away or continues to grow. Don't screw around. Go to someone who specializes in sarcomas. Let them be the ones to tell you it isn't #cancer. Help protect yourself. Don't end up like us. If one #doctor won't listen, FIND ONE WHO WILL! And don't stop until your voice is heard. We as #caregivers #parents #patients must #advocate for ourselves, our #children and our loved ones. Help spread awareness about sarcoma & #ChildhoodCancer by sharing Ciara's Childhood Cancer Story. #EndSarcoma

So we will continue to follow up in Houston with regular scans. Thankfully the weekly visits have been set back to 90 day scans! Although we will be coming back for her next regular scans the week of July 14th. I also spoke to the oncology team from MD Anderson tonight and they agree with the results after they met today during tumor board! This is definitely answered prayers. Thank you all so much for continuing to pray and send support our way.


Photo #1- Ciara, Mom, Dr Chappie and Jaedyn (Ciara's little sister)

Photo #2- Ciara & Mom

Photo #3- Ciara & Jaedyn celebrating after we got the good news
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5-12-19 Day 3 – after biopsy

We made it home safely late Fri night/Sat morning. We came home to spend a couple days with the twins & the family since it’s Mother’s Day. We’ve missed them A LOT! We also didn’t want to get stuck in Houston at a hotel paying for more days than we had to because of the weather. So we went ahead and came home when the weather updated and showed we could make it before the heavy downpour.
Ciara’s doing well & her pain is under control with around the clock pain meds. But given the fact she had a bone biopsy & that Dr Chappie messed with her allograft (not too much he said) but he did mess with it, she’s going to be in some pain for a few days. We go back to Houston Monday. The waiting for the official pathology results is awful. I can’t even explain how my mind has been racing. Sleep is something I’m getting zero of because I’m afraid to fall asleep. It’s seriously like diagnosis week all over again. It sucks because I just want this to be over. I just want her to be okay. I just want her to get to have a normal 9 year old life. We don’t realize how fortunate we are to have happy, healthy kids until something happens. Life isn’t supposed to be this complicated, sad or painful. It’s literally like riding a roller-coaster. You don’t know what’s going to happen from one day to the next. I hate this. Cancer you SUCK! It’s Mother’s Day and I just can’t shake my crappy feelings. I can’t find a smile even though I have many reasons to! And this is just me (the mom) & how I feel. I can’t imagine Ciaras thoughts & feelings. She doesn’t like to be alone even for a second because she gets scared. She went to the store with Dad Saturday to get me a card for Mother’s Day & she had to use her wheelchair. Her knee is “too heavy” to go on crutches for very long she says. She HATES her wheelchair now. I’m so glad we still have it after her last surgery. I didn’t think she’d back using it in just 4 months though. Is she always going to have to do this? Is she always going to end up with biopsies when the scans are questionable? She deserves better than this! Most people aren’t affected by cancer until they are old! Not Ciara… 8… 8 freaking years old! I don’t understand. I hate this so bad because I can’t change any of it. I can’t make it go away. I can’t erase what she’s had to experience. I can’t protect her from it. I can’t promise her that this is the last time. I’d give anything to take her place!!
We have no idea what her leg looks like this time. Dr Chappie said to leave the sterile wrap on that he put on in the operating room and do not remove it until she comes back to see him. This week can’t get here fast enough. God PLEASE let these results come back quickly. And PLEASE PLEASE PLEASE don’t let them show any signs of sarcoma! Please friends keep praying for my baby. And for her anxiety to settle down before she gets literally sick while we wait.
Thank you all for being here to show support for our family. This is awful awful awful and I wish this life on no one! When you lay down for the night you think about tomorrow. You think about going to work, the kids going to school, homework, bills, dinner, cleaning the house, laundry, etc. You think about “normal life stuff.” Us kid cancer moms who won the shit lottery… the one we didn’t even know we were playing… we lay in bed every single night worrying about what’s going to happen the next day to our child. Are they going to relapse? Have to get poked or scanned? Have to have surgery? Get new medication? It’s ALWAYS thoughts about our cancer kid. Most of us childhood cancer moms have more than one child. We can’t even focus on our other children and enjoy the little things because we live in constant fear of what tomorrow is going to bring. Its so hard for me as the mom but I know it’s a million times worse for Ciara. She has goals and dreams to grow up and do big big things in this world. It makes me cry every single time she says, “Momma when I grow up I want to…” Because it brings all my greatest fears back during that moment. I just pray this is not how the rest of her life is going to be.
So we’ll be in Houston next week & it looks like it’s going to rain again. Pray it doesn’t because this trip it’s just me & Ciara. Dad has to work & can’t take off. He has to have enough time to take off to go on Ciara’s Make-A-Wish trip. So this will be our 1st trip alone. I’ve been off with Ciara since day 1. When I take off to care for her, it’s unpaid. Thank God my manager & supervisor understand what we are going through and they communicate with HR to save my job. They can’t do anything about me having to take it unpaid but they can and have made sure that I’ve kept my job. I appreciate them so much more than they’ll ever know! But I do have to say, even though I am completely at the mercy of the company & they don’t have to work with me since my FMLA was denied, they are being understanding about our situation. I may not get paid but I still have a job. There’s a reason why God put me at BCBS. I obviously needed to know what I’ve learned from working there. It’s helped me understand & navigate through some of the hassles that comes from having insurance and a kid with a rare form of cancer that most people in the world don’t understand. So I am grateful and beyond appreciative for everything this company has done for me from day 1.
I ask you guys to please help share updates. There may be someone who needs to hear Ciara’s story to help them with their own situation. And since we’ve had multiple last minute Houston trips recently, it’s killing us financially. 350 miles one way, anywhere from 3-5 nights lodging, food, gas and parking omg parking is ridiculous. Something really should be done about the Texas Medical Center parking fees. We spent over $100 in parking in 5 days. Since Ciara’s doctors are in all different buildings/hospitals, we have to pay parking at each garage and there’s no in/out privileges. It’s ridiculous you shouldn’t have to pay 3x in one day because you see multiple physicians. Anyway, just my opinion but I’m really trying to figure out something to change this to help us & other families like ours. So if you have any ideas send them my way!
I appreciate every single one of you who take the time to like, share and comment on her updates. I appreciate and could not do this without those of you who’ve been able to help us financially. You have no idea how much we appreciate you. And our prayer warriors there’s absolutely no way we would have come this far without prayers. God has blessed us with the best support system and some of the most amazing people have come into our lives since we started this journey. You all mean the world to our family and we love you guys. Please keep praying and once I know more about the pathology results I’ll update everyone. Until then keep sharing her story. Kenzie – Ciara’s Mom

For more pics & updates follow her on Facebook: facebook.com/teamCIARA

Pic #1- Ciara giving Dr Chappie a kiss on the cheek for the first time ever right before surgery! He asks her every time he sees her if she’s ready to give him a kiss on the cheek.
Pic #2- Ciara as we arrived at the hospital
Pic #3- Dr Chappie had just told her he had to do a biopsy. She was extremely upset. He gave her a kiss on the forehead and told her he was going to take care of her. She was heartbroken that she had to do surgery for the 3rd time on her knee
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Update 5/8/19..
recent scan results:
3/28- MRI showed increased edema.
3/29- ULTRASOUND showed multiple echogenic foci w/ posterior acoustic shadowing (basically they don't know what it is but somethings there)
4/1- X-RAY showed increased lucency above tibia (where primary tumor was)
4/25- MRI obstructed view but didn't appear to have recurrence but showed increased edema
5/6- CT showed soft tissue thickening with heterogenous punctate hyperdensities (microcalcifications?) could be recurrence or post surgical changes
5/8- ULTRASOUND radiologist himself completed the test, not a technician, there is definitely something in her soft tissue but unable to determine what it is. It has gotten larger since April and become more painful to Ciara when examining via ultrasound. Recommended excisional biopsy to check for sarcoma recurrence.

We saw Dr Chappie today. The photo is Dr Chappie trying to give her a kiss to make her feel better after telling her he needed to do a biopsy tomorrow During our consult while ago we looked at scans together. She will have an excisional biopsy tomorrow at Children's Memorial Hermann Hospital (which I hate btw) @ 3pm. He doesn't feel like the soft tissue is the concerning area like the radiologist is. He's more concerned about her bone. Ciara's primary tumor was located right above her bone in the tendon. Synovial sarcoma can go to the bone. So she will have soft tissue and bone biopsies tomorrow. There will be frozen sections (where the pathologist is in surgery & gets preliminary results) so we will know a "maybe" tomorrow otherwise we won't know anything until next week. So MORE WAITING! But there is concern that the cancer is possibly back. Chappie doesn't think it is but he's not sure and he said he won't be able to sleep until he knows for sure so he wants a biopsy. So biopsy it is. I still haven't heard from MD Anderson Cancer Center on what they think. But it doesn't really matter because Chappie agrees biopsy is needed. Ciara is not happy. When he told her that she was having surgery tomorrow she cried & got off the table, onto the floor and hid under the table. It broke all of our hearts. It was so sad. She's so sick and tired of being tested, poked and cut. She just wants to be a normal 9 year old little girl. So friends please pray for her little heart to understand why this is happening. And pray for GOOD Results, no cancer in the BONE or SOFT TISSUE, a successful operation, minimal incision and a speedy recovery!!! It is planned at 3pm and she shouldn't be spending the night at the hospital. I'll update tomorrow but tonight I'm taking a break and spending time with my baby. Please share & please pray! Pray for Dr Chappie too because I know he doesn't want to do another operation on Ciara. He loves her and cares so much for her. It breaks his heart to see her going through this too. But I thank God for leading Chappie to us. I truly believe we're in the best hands possible.

I honestly don't know how much more I can take of this. My momma heart is shattered. This is her 5th operation in 9 months. So please friends PRAY!!!
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$11,705 of $15,000 goal

Raised by 110 people in 11 months
Created August 16, 2018
Fundraisers for Ciara
on behalf of Lesa Stutts
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