Honored Kid

Hailee Cunningham

Hailee Cunningham Kid Photo

Location

Ft. Branch, IN, US

Diagnosis

Rhabdoid Sarcoma

Date of Diagnosis

December 2012

Status

Passed away

Treated At

Riley Hospital for Children IU Health Proton Therapy Center

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My Story

So our journey started basically September 29. Hailee fell 4ft out of the back of a Uhaul on her face:(. She had X-rays of face to make sure nose wasn't broken and we treated her like she had a concussion just to be safe. So for 2 wks she took it easy no rough housing, video games, or sports. Then no sooner then she was back to doing everything. She started complaining of pain in vaginal area so we took her to doctor and she had a urinary track infection. This took 2 rounds of antibiotics. But it didn't help. She got to even limping on left leg. So we went to ER and had X-ray of leg and a urine test. Nothing sent us back to family Dr who then followed up with blood work which was great no indicators. So then he recommended we get a pelvic CT and left leg CT. These revealed nothing. Then we went to orthopedic specialist urgent care who then ordered another leg X-ray and a bone scan. Nothing. All this time and her pain is still there in her vaginal area and now leg has pain and her limp has progressively gotten worse. Novembwr 19 I called dr told we couldn't take anymore she was no longer wanting to walk on own. We were admitted at Gateway who then did more blood work and CT. Nothing so dr attempted to tell us that she thought is was behavioral bc Hailee wouldnt cooperate but she did not sleep Monday night and she wanted her to walk and Hailee wouldn't and threw a fit. I told Dr that my daughter was tired and hadn't slept and she was in pain. Later when picking out a movie I ran into to her and she said she was running one more X-ray/scan in belly area. I said ok because Hailee may be a drama queen but she is not smart enough to fake a limp day in and day out in the same leg and cry out in pain in her sleep. She said okay. Well thats how we got the results of a hematoma/abcess on her piriformis muscle which would need a MRI to check to see if needed drained or what. So Wednesday the MRI revealed her mass and sent us to Riley's. And wouldn't you know the Dr wasn't the one to give us this news. Thank goodness for her because she may have had to have picked herself up off the floor for telling us it was behavioral. The fall from September was a blessing in disguise because we think it shocked her system enough to start showing symptoms to get us this news. Because otherwise who knows when we would have known. December 3 2012 Hailee was diagnosed with a rare inoperable stage 3 rhabdoid sarcoma prognosis of 18 months due being in an area outside of kidneys or brain where this type of cancer usually occurs though she could very well be cured and that's what we pray for everyday. She's been responding well to chemo and started her 6 wks of proton beam radiation March 4. Hailee is on wk 15 of 30 weeks of chemo. She lives her life no differently she is happy bald and beautiful. She is our hero and inspiration. The true meaning to never take anything for granted. We are blessed and humbled beyond words of how the community has lifted us up in support. Thanks just isn't enough for everything there are no words. Due to everyone's support I have been able to be on leave from work to take care of Hailee bc she can't be in daycare and around germs due to no immune system. Though either way I would be with her regardless but with all the support of the tshirts bracelets and benefits they have supplemented my income and helped to pay for our stay in Bloomington for her 6 wks of radiation at Jill's House. Hailee finished her 30 wks of chemo in July 2013. On August 12,2013 she had her 3 month MRI and was found to be NED (no evidence of disease). Her tumor was still there just dead. She started Kindergarten the following day. We signed her up for soccer and she enjoyed her life like any normal 5 year old. October 18 we left for her Make A Wish trip to Disney World. We all had a wonderful trip, it was amazing and much needed. Hailee had some pain during her trip that concerned us so we had her 3 month MRI moved up to Nov. 1, 3 days after we returned from her trip. She had relapsed and her tumor was bigger than it was originally. We had to have another PET scan to make sure it hadn't spread. It hadn't thankfully. Her pain got bad enough that we had her admitted for pain control for 5 days brought her home for 2 and had to take her back for another 6 :( She started her chemo during these stays. Her treatment plan was 4 days outpatient chemo at Riley off 2 wks repeat. She and I stayed in Indy with my best friend during the other stays. December 30 was another MRI to see if this chemo regimen had worked. It hadn't.... The doctors needed to discuss and see if they could get a closed clinical trial drug for her to take. She was approved and she took it 7 days a wk by mouth at home. It wiped her out!!! She slept more than she was awake. She was off 2 wks and we were to start again on Feb 4 however January 31 I had to take her to Riley she had been in pain from what we thought was constipation and had a fever when we noticed a bulge in her back. This was the day before her 6th birthday and we had a huge slumber party planned for her. The doctors upped meds gave new meds and a dose of antibiotics to see if she could make it til Monday. She did somewhat.... we got to Riley and had her admitted for pain control and wanted her back checked. They did a CT on February 5. Her tumor had grown more and was now into her right buttock. Her oncologist told us it was time to make a big decision and the ball was all in our court. We chose to stop treatment and enjoy her and not make her sick anymore. We brought her home February 16 on hospice. Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. 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