Back to Blog · September 18, 2020 · Fund Leader Posts
Everyday 43 children are diagnosed with cancer. June 1, 2017 was Chloe’s day.
We drafted Chloe Booker and her family onto the WashU Women’s basketball team on November 18, 2019. We have been a part of her family and her fight ever since. We are reaching out to friends, family, and support across the WashU community to help our teammate in her long battle with childhood cancer. We set a big goal. We want to make a big impact. We want our presence to be felt. We want to send a great big BEAR Hug to Chloe & her family! Please consider joining the fight with us!
Here is Chloe’s story:
My name is Mia, I am a single mother to my three children Maurice (17), Cory (13) and Chloe Rose (7). Chloe had been in incredible pain, and for 2 months we had countless tests, scans, x-rays and bone marrow biopsies done on her to get her diagnosis and understand why she was in so much pain. Chloe was 4 years old when she was diagnosed with Stage 4 Neuroblastoma, a cancer that impacts Nerve Cells of infants and children.
After she was diagnosed Chloe received a Broviac, a tube placed in her chest connected to her heart. She received Chemotherapy, any liquid medication needed, any transfusions she needed and she also got blood draws done through this tube. Her treatment plan consists of five parts Chemotherapy, Resection of Tumor, Radiation, Stem Cell Removal & Transplant and Immunotherapy. Her doctors told me if any part of her treatment plan wasn’t completed it would cut her life expectancy by 20% per part.
She did 7 rounds of Chemotherapy beginning in June of 2017. In October of 2017 she had the largest tumor removed by surgery; fortunately she did not have to lose any major organs as they first predicted. Another blessing, she had her own Stem Cells replaced in December of 2017.
She spent 22 days in isolation before she could go home. After having a break to recover from the surgery, she did 20 rounds of Radiation in February, 2018.
Chloe then began her Immunotherapy treatments in March, 2018. Chloe’s immunotherapy treatment required a 7 week hospital stay. Chloe and I spent well over 300 days in the hospital and over 200 nights in the hospital, and away from her brothers, only 13 and 9 at the time.
I have done all of Chloe’s home care; changed the dressing on her Broviac leading straight to her heart, given her shots, countless medications, IV fluids, IV medications and NG feeds. I have admitted her to the hospital and took her to all her appointments. This has taken it’s toll on our family and my job. When everything started, I had to stop working immediately and then had to get fired so I could get my unemployment. Unemployment ran out when Chloe’s radiation started, so I returned to work part time as I still had to care for Chloe and help care for my two boys.
In August of 2018 Chloe started her 1st year scans where she was scanned every three months for one year that ended August of 2019. All of those scans where Clear. We were so excited!!! She was moved to the Late Affects Team in August of 2019, only be scanned twice a year as long as all scans remain clear.
Over the past year, the impact of chemotherapy on a little body has shown its face. Chloe now has high frequency hearing loss, has to wear glasses and has nerve damage in her right leg. She experiences nephropathy especially in the warmer months where she will get very hot, almost burning on the inside. She is in Physical Therapy for her leg, has recurring UTIs. She is on a daily antibiotic daily and an extensive retraining schedule of her bladder.
Chloe didn’t really have time to be a kid a “normal kid” before cancer came in and tried to take her from us but she is a fighter and has so much strength in her. Chloe is so loving and friendly. She loves to play with her toys, her brothers and any kid she meets. She likes to play with playdough, paint, and do art projects. At the same time she is shy and quiet until she gets to know you. She also loves to go to the park, play with animals and talk. She loves to ask questions!
Pre-COVID, Chloe completed her treatment and was what they Consider NED = No Evidence of Disease. This is a good thing, but also a hard thing. People think because Chloe looks good most days, her hair has grown back in, that she is not confined to a hospital bed or her house that she is magically fixed or better. Our financial problems did not go away in her remission, neither has the impact of cancer on her little life. We will be dealing with the impact of cancer on our family for the rest of our lives.
We had been moving forward, finding an easier routine, getting back to somewhat normal despite COVID restrictions, when, it all came to a screeching halt. Chloe had been experiencing some cheek pain and then a bump popped up on her head. It could have been a mosquito bite, we had been spending time outside. I gave it a week before calling the doctor. After a visit to the PCM, the dentist and multiple calls to the Late Effects team about the same bump, I made it clear to the doctors she needed to be seen. Managing it with Tylenol, Ibuprofen and heat & ice was no longer acceptable, and wasn’t showing improvement. I’d be lying if I said I did not already know deep down in my heart what was happening. I wanted so badly for it to be something else but a bump that has been on your body for over a month that has not changed in color, has not bruised, has not oozed, has not itched, only grew and created debilitating headaches in a 7 year old cancer survivor couldn’t be anything else.
On June 26th, 2020, I took her to see her Hemoc doctor. I could see it in her doctors eyes as he felt her head, I could hear it in his voice as he said she needed to be sent for a X-ray right away.
He informed me she had a mass on her head that has eaten through her skull. She needed to have more scans and a Biopsy done by the neurosurgeon immediately. Chloe was scheduled for an MRV and a head CT on 07/02, repeated on 07/10.
- On 07/13 Chloe was admitted to Childrens Hospital for a Brian Biopsy, a Bone Marrow Biopsy and her Broviac Placement.
- On 07/14 Chloe had Pulmonary testing done on her lungs as she has issues with those, she had a EKG & a Echo cardiogram done and her injection for her MIBG scan that was the next day.
- On 07/15 Chloe has a sedated MIBG scan and her Chest Pelvis & Abdomen CT scan.
- On 07/17 I was given the actual diagnosis of Relapse Metastatic Neuroblastoma.
- On 07/20 Chloe was back at Childrens for her 1st Cycle of chemotherapy which last all week
I’d be lying if I said I didn’t want to scream out in pain when I heard the news; Chloe relapsed.
Her survivor rate has now gone from 65% to 20%.
I’d be lying if I said I was okay, because I am far from okay. Having to come home and tell my sons that we were back in the belly of the beast was pure hell. They are heartbroken, angry and don’t understand. Neither do I.
Since this is a relapse there is no road map, no clear treatment plan, no cure. Chloe will do two cycles of chemotherapy and will be scanned again to see if the chemo is working. She still has part of the tumor in on the inside of her skull because the neurosurgeon only removed the part on the outside of her skull. After the scans we will meet with her doctor to talk about what options are next.
So here we are again, during COVID-19, trying to do the best we can to survive. My boys cannot come to the hospital to visit Chloe, so I leave my sons home alone to go to treatment and appointments with Chloe and try to ensure my boys have what they need financially, mentally and emotionally during all of this. My hearts breaks for all of them, they want to be together, to fight together, to support each other, but with COVID, it just isn’t possible. I do know they love each other, and they will fight for each other until that is not possible anymore.
Chloe will be home two weeks and then return 08/11, the day after her 8th birthday.
Chloe’s fight is starting all over again and when she fights we all fight we don’t endure her body pain but we all endure the mental, emotional physical, spiritual and financial pain of this nasty monster.
Thank you for reading our story.
Mia Bell, Chloe, Maurice & Cory