My name is Tanya Sullivan, and I am a mother of 4 children and have full time care of my 16-year-old niece. My daughter Anna is the oldest who loves dance, my 16-year-old niece Rachel loves to draw, my 13-year-old son Lee loves music and animals, my 14-year-old son Lucas loves to listen to music and use technology, and my 11-year-old son Franklin loves all kinds of sports.
In August of 2017, my husband passed away from a motorcycle accident in Illinois. Our family decided to relocate to North Port, Florida, in July 2018.
I am a Home Health Registered Nurse who worked full time until my son Lee was diagnosed with T-cell Acute Lymphoblastic Leukemia on April 25, 2019. Now Lee needs my complete care. My hope and desire is to return to work as soon as possible; experts say 18 months.
Lee has faced several complications, but we all keep on fighting…him most of all!
Here is a brief synopsis of what has taken place in Lee’s life the last 8 months…
April-May 2019: Around April 20th Lee started feeling tired with nausea, vomiting, stomach pain, leg pain, and a decreased appetite. We believed it was the flu for a couple of days. Then on April 23rd Lee started having severe right lower stomach pain with a low-grade fever, so I took him to the local ER thinking it was appendicitis. They diagnosed him with a urinary tract infection after doing several lab tests and a CT scan, even though Lee didn’t have any symptoms of a urinary tract infection. He was sent home from the ER at 3:00 AM.
I requested all of his test results before we left the ER. The next day when his pediatrician’s office opened, I took him in with his labs and test results and our pediatrician instantly sent us to Golasino Children’s Hospital where Lee was seen in the emergency room. After several lab tests and ultrasounds we got our answer. It was 1:00 AM and the emergency room doctor came in with another doctor. The new doctor was introduced to me as the oncologist. In that very moment my heart just broke as I knew what she was going to tell me. I held Lee as we were told that the doctor was almost positive he had leukemia. They just were not sure which kind and we would be admitted to the oncology floor for further tests the next day.
The next day Lee went in for a bone marrow biopsy (April 25th, 2019), and by late afternoon we had our diagnosis of T Cell Acute Lymphoblastic Leukemia. Lee underwent surgery for port placement the next day. Lee then experienced DIC (a disorder that causes your body to not clot properly). So now he was battling leukemia and DIC. It took a little over a week and several plasma, platelet, and cryo transfusions to get Lee out of DIC.
Then due to the DIC, his port site dehisced (came apart) and we had to remove his port and he had to undergo a picc line placement. The result was Lee has a severe wound on top of the leukemia.
On May 28th Lee obtained remission!
June-July 2019: Lee continued to have severe stomach pain. It turns out Lee had appendicitis and his appendix ruptured. So now Lee had to undergo emergency surgery for an appendectomy. As Lee was recovering from his appendectomy at the end of June, he became sick running temps, unable to eat, unable to walk. This resulted in a 12-day hospital stay.
July 29th - October 14th: Lee became severely malnourished and was hospitalized originally for ng tube placement for feeding, but the chemo depleted his little body so much that he could not fight infections. He then got a fungal infection throughout his blood and some of his organs. It caused his body to go into septic shock, and he ended up in ICU on life support for 3 weeks. Lee went home after almost 3 months in the hospital on October 15, 2019. After 10 days at home, he suffered fevers and neutropenia. Lee was admitted back to the hospital on October 31, 2019 .
September to December 14, 2019: Lee requires extensive physical therapy so he can gain the strength and learn how to walk again from being in ICU so long. There is damage that was done to his spinal cord from chemo. He goes to Fort Myers 3-4 times a week for physical therapy and oncology appointments.
Lee has another round of invasive chemotherapy coming up in January 2020. Then he has approximately another year and half of maintenance chemotherapy to undergo. He will also require treatment for the fungal infection for the duration of his chemotherapy.
Lee is an inspiration, warrior, and hero. Our God is an awesome God that gave my child the strength he needed to beat the odds when he was given a window of 3-5 days when first admitted to ICU in September.
I was a foster child and have no family of any kind. Thankfully some friends have come alongside us and are active in caring for our emotional needs. My daughter has been encouraged by the Awaken Church Youth Group and leaders.
My friends encouraged me to begin a GoFundMe page for Lee and my family.
I am asking you for some help for the next 18 months. I have a job waiting as I maintain my Registered Nurse credentials through all this.
As you can imagine a regular family of six would need a budget of $65,000 for 18 months. We have tightened our spending to the minimum, all sharing in the new circumstances. I intend to work part time by July 2020. Our need is a must of $48,000.
On behalf of the six Sullivan’s in our home, and from Lee my warrior, we thank you in advance.
Our God promises us He will provide all we need! We trust Him as we ask you.
Tanya Sullivan, Mother
North Port, FL
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