Honored Kid

Aniyah Byrd

Aniyah Byrd Kid Photo

Location

Lake Charles, LA, US

Diagnosis

Neuroblastoma

Date of Diagnosis

May 2018

Status

Deceased

Treated At

Children's Hospital of New Orleans

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My Story

Aniyah was diagnosed in May 1,2018 with Neuroblastoma stage 4 . One day she woke up from a nap an she was limping we didn’t think much of it til she started crying at night saying her leg hurt . I made her a doctor appointment with her pediatrician, they did blood work multiple times still nothin . Then one day we had to see her pediatrician n go do bloodwork an her doctor said we had to go to women an children in Lafayette Louisiana. After I gave birth to Aniyah’s little brother that day , their dad took her to Lafayette the next morning. That Sunday April 29,2018 I came home to being told my child has CANCER!Next day me an dad went to Lafayette to meet Aniyah n my mom an his parents. So we get there I found out that she’s going into surgery to have her port placed in . That took a few hours . After surgery was complete her doctor came in an said she wasn’t diagnosed with leukemia, she has Neuroblastoma . Aniyah started her chemo treatment May 7,2018 . We finally got to go home on Mother’s Day May 11,2018 . A week later Aniyah’s hair started to fall slowly but fast .October 10,2018 Aniyah had her big surgery to remove her primary tumor . Everything looked good we got to go home few days later . Her scar heeled perfectly . Prior to that November 20,2018 another surgery to remove her port an to place her central line in . With all this Aniyah kept going with a big smile . Her results were looking good tumors were shrinking . She had her moments when she just wanna lay down an rest but other than that she was active . July 2018 she had her stem cells remove in New Orleans at the Children’s hospital. We stayed for 5 days 12 hr a day seem like.We had to prep for her transplant in December . So now we dealing with children’s hospital in New Orleans. Every week we were there doing labs , 24 hr stays . We spent thanksgiving with family . December we’re in New Orleans . They started her on different medications and a strict nutrition diet . She couldn’t have fast food , couldn’t have anything with red peppers etc . Everything had to be store bought or food from the cafeteria. To enter her room you had to be gowned up . She wasn’t allowed out her room. Her labs were good . December 5, 2018 transplant day . It went smooth they put her stem cells back in , that only took like an hour max . We stayed the whole month of December in hospital only got to go home for Christmas.We only stayed for Christmas had to return the day after . Once we got back to the hospital we were able to move into the house off campus for families . It was very nice . We stayed in New Orleans for 3 months as out patient we went home on weekends . January 24,2019 we started radiation for two weeks . In the mist of doing radiation we still attended doctor visits everyday . February 25,2019 was Aniyah’s 3rd birthday we didn’t plan a birthday party because we didn’t know if we were going home we celebrated just us . She as excited to get her bike.We ended up moving back home an just driving to an from once radiation was completed. Now here we are doing immunotherapy 15 rounds .March 7 ,2019 we had doctor visit after labs , X-ray was completed we waited an the doctor came in extra exited an she announced that Aniyah was in remission! That moment I was excited I hugged Aniyah an cried a little . We went home afterwards.March 17,2019 Immunotherapy started our stay was 2 weeks at a time . She would have fevers from Time to time an out stay would be longer if her cultures come back Positive for Something .Here we are in June , so one day Aniyah wasn’t really drinking or going to the bathroom looking sick probably for 2 days . We ended up going to women an children’s in lake Charles . They ran test she was dehydrated they put a catheter in her and they had to airlift her to New Orleans . We had to drive to New Orleans to go meet her .June 28 ,2019 she had minor surgery to remove scar tissue that was blocking her bowels she couldn’t eat anything at all before surgery or after . They had to put her back on tpn (total parental nutrition) just until she could eat again. We had to chart everything she ate in order forHer to get off tpn .July 4,2019 we got discharged an came home without her being on Tpn . Few days later Aniyah would smile an her mouth would go to the right . We had to go to New Orleans for her doctors appointment. Labs etc was fine . I asked her doctor about it . She didn’t know so she scheduled a mri for that week .So July 18,2019 we was scheduled for an MRI so that day we waited for results . When the doctor walked in I already knew something was wrong by the way she walked in . We were told that her scan showed tumors . They scheduled a ct an bone marrow scan for July 22 & 23 for a biopsy.In the mean time we stayed in the hospital we received results the same day . July 23,2019 results said the tumors were Neuroblastoma Aniyah had relapsed. Aniyah was suppose to do her last round of immunotherapy an we would’ve been finish with treatment . But we had to start over with chemo treatments . July 25,2019 round one of chemotherapy again .No matter what she went through she kept a smile on her face . She loved her brothers . September an October 2019 was treatments an scans . Times we were home she went to school she attended Pedia trust . Pedia trust was an medical center for children. I also workedThere so it easy for us .December 1,2019 we were home playing hide an seek in the dark . Me an her would be teammates . As we were playing I put her down so she could walk while we were in the living room we both didn’t know that there was a bag on the floor , she tripped over the bag but didn’t fall . The next day she complained about hurting an how she couldn’t walk . So I gave her one of one of her meds that was for pain , that didn’tWork . I asked asked if she wanted to go to the e.r . We went to the emergency room in lake Charles. They gave her a shot an instantly she was fine an wanted to walk.But the next day December 3,2019 pain was back , I called New Orleans children’s hospital. An spoke with her team and told them what was going on . They told us to come that day to their emergency room. I started getting out things ready . Dec 4, she was scheduled for scans results came Back the same day . While waiting on her doctor , we were in the room Aniyah was playing on the tablet . Honestly I was nervous. Well doctors came in , just by how she came in I already knew it wasn’t good news .Doctors told me how the scans were looking an that there was nothin they could do for her . But they could try st Jude n continue treatment. I asked how long she didn’t wanna say . But she said a few weeks I said okay . I looked at Aniyah an asked if she wanted to stay or go home . She said go home . I decided to take my baby home .When the doctor left out all I could do was hug my baby an let her know how much I love her .I called her dad a told him the news . My daughter grandmother was heading to new Orleans to surprise us but she received the phone call about the news . I called my mom and told her I needed her . My mom came later when she got off work her an my aunt .Aniyah was still smiling being herself.The next day my mom prayed over my daughter you feel the presence of God I’m the room .The next day Dec.6,2019 we got to go home (Lake Charles Louisiana) once we arrived family as waiting at our house . Hospice came to see us and explain how hospice care work . I really didn’t need any help with taking care of her . So they only came if it was needed .

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