CSI ATHLETICS UNITES IN SUPPORT OF ALETHIA'S GOFUNDME INITIATIVE

9/7/2023 6:00:00 PM

CSI Athletics is proud to announce its support of a GoFundMe initiative aimed at rasing money for Alethia in her battle against leukemia. Last month, CSI Baseball Head Coach and Staten Island Ferry Hawks Assistant Coach Michael Mauro was joined on the field by Alethia ahead of the Ferry Hawks game on CSI Night at Staten Island University Hospital Community Park. This gave him the chance to introduce her to other Dolphins coaches and some CSI student-athletes. This introduction left a lasting impression on many within CSI Athletics, and the department came together to find a way to help support Alethia in her fight against leukemia. The result of this effort was the start of a GoFundMe page and the creation of a new banner to be hung in support of Alethia at Dolphins Soccer Park. Each CSI Athletics program will also host one event this year that will be dedicated to raising money for Alethia and her family.

Below is Alethia's story as told by her mother, Elizabeth Wilt.

It all started on November 10, 2021. We were in Harrisburg, PA at a conference. That evening after a normal fun day Alethia started to cry that her lower right side of her abdomen was hurting. I had noticed earlier that she had some bloating in her stomach but chalked it up to overeating pizza the night before. The pain in her stomach was pretty severe, enough that she could not lay flat that evening, and we had to give Tylenol throughout the night. My initial thought was gas, but by morning I was wondering if it was her appendix. We packed up in the morning and drove the 3 hours home. I called the pediatrician and took her straight in. He didn't think it was the appendix but I asked for an ultrasound to be safe. The ultrasound caused a lot of pain, but they said that she must just be constipated and dismissed it.

Throughout the next week, her bloating remained and she started having random pains. My husband went to pick her up for a hug and she screamed about her back. Her hands would randomly hurt, the same with her feet etc. On Thanksgiving day she had her very first headache and complained more about her back. That next Monday I asked for another checkup. The doctor ordered an x-ray to check for scoliosis and I asked for another ultrasound. She screamed the entire ultrasound again. I called the doctor and he got me in to see a gastrologist the next morning. My concern was that ultrasounds do not hurt, but she was in immense pain and I knew something was not right.

The gastrologist looked at both ultrasounds and saw that her liver and spleen had grown between the two ultrasounds. I am thankful that I pushed for both of those ultrasounds. His first guess was EBV which is the virus that causes mono. 90 percent of children get this with no symptoms. Blood work showed antibodies for EBV was very high so we knew that she had recently had EBV. The gastrologist assumed that is what was causing all the problems and dismissed the case to have a followup after Christmas. All week I sat and pondered one thing. "Why would her liver and spleen still be growing if she was not actively fighting a virus and why are the lymph nodes in her neck large?" I began to research and most things pointed to Lyme Disease and parasites.

On Wednesday of the next week I called the doctor and asked if I could go over the lab work in person and ask questions. He scheduled me that night as his last patient so we could have an uninterrupted discussion. Alethia's birthday was coming up, and someone had sent her stickers that day, so she sat quietly in the doctor's office and played while we talked about the labs and what all the numbers meant. I asked about the liver growth and that question could not be answered. I asked if i could see an infectious disease doctor because I wanted to rule out bad stuff since we were planning to go away for Christmas. Then, while we were talking Alethia grabbed her chest and started bawling and screaming that her "heart was spreading out in her chest." I honestly thought I had waited too long and she was dying. It was so terrifying. But then, as quickly as it came on, it went away. With tears in my eyes I looked at the doctor and said, "this is why I feel like I still need answers." "This is what is going on and I am not convinced she is on the mend."

The doctor immediately picked up his phone and called the pediatric infectious disease specialist asking him on his cell if we go be seen first thing in the morning. I didn't sleep that night. I watched her because I was afraid an episode would happen while I was asleep and unable to help. The next day we went to the infectious disease doctor and he sent us over to hematology after writing out what blood work he wanted done. He thought the issues were being caused by Lyme Diseas and parasites. The hematologist looked her over and was the first to really focus on her swollen lymph nodes. He felt her liver, looked over her blood work and became very serious yet kind. I will never forget the look of sympathy that he gave me. He asked if we would be willing to go to the hospital to get the blood work done so he didn't have to wait the whole weekend for the results. I was fine with that because I wanted answers too. He said that I was not going on vacation and that he prepares for the worst and hopes for the best. I knew that it was bad at that point.

I cried as I left the office and headed home to pack some comfort items for the hospital. I always bring a pillow and blanket as well as activities to do because hospitals take forever. When we arrived at the hospital, my pediatrician met me there. He asked if I wanted to know what the hematologist suspected. I said yes so I knew what to expect and not be blindsided. I also am a researcher and want to be knowledgeable enough to have an educated discussion with the doctor knowing what questions to ask. My pediatrician said that Burkitt's Lymphoma was suspected because there is a direct correlation with EBV. That is the fastest growing pediatric cancer and her survival was dependent on quick action. This is why he sent me straight to the hospital. Blood work revealed that her potassium was low so she was sent to PICU for the night. Potassium given through IV burns like fire so I had to rub her arm during the entire hour and a half infusion or she would scream in pain.

The next morning we were sent to our room, and the hematologist met us later that evening, December 10^th. He said that it was not Burkitt's Lymphoma but he was sure that she had either leukemia or lymphoma. At this point, we knew that she definitely had cancer. He needed to do a spinal tap and a bone marrow biopsy to determine the type and subtype. Because it was the weekend, we needed to wait until Monday when they could do the bone marrow biopsy, so we requested to go home Saturday for the night to process everything. We went back Sunday evening to prepare for the next morning's tests. The spinal tap was scary but the bone marrow biopsy was painful for days.

Monday evening we were told the official diagnosis "Acute Lymphoblastic Leukemia B-cell." We requested to be transferred to Sloan Kettering in Manhattan. It took two days for insurance to approve, and Wednesday night we were driven by ambulance to the city. The very next morning she was in surgery for port placement and the next day was her seventh birthday. She started chemo on her birthday. We were in the hospital until Christmas Eve and they sent us home where I was to administer oral chemo.

Treatment for Leukemia is long. I have known other kids that were diagnosed with a different cancer after Alethia and were done with treatment within 4 months. Treatment for Leukemia is a minimum of 2 and a half years. On her seventh birthday we were told she would be nine before treatment was over. Treatment is divided up into cycles and risk factors. Induction is by far the hardest part which is the first month. She took high dose steroids, super scary IV chemo that required an emergency kit in room prepared, and a team would watch her for an hour because so many children have life threatening reactions to it. Thankfully, Alethia handled it well, but it made her feel like she was starving. She would wake up three times throughout the night begging for food. She became bloated, her hair started falling out, and she gained 8 lbs in one week. That was just the first month.

Her risk category was dependent on another bone marrow biopsy performed at the end of the first month (induction phase) to see if they still saw cancer cells in her marrow. If they detect lingering cells the child gets bumped to the high risk category and will have a lot more chemo. If they do not find residual disease, then the child is placed on the standard risk tract and genetics determines which arm of that category. There are 4 arms A,B,C, and D. A is standard-favorable risk, B is standard-high risk, C is high risk and D is very High risk of relapse. Alethia was placed on the B arm in her case study which meant that she had some genetic factors that increases her risk of relapse. She was able to receive an immunotherapy that is proving to be a very successful treatment for Leukemia. She received two months of the immunotherapy, and during those two months she had to stay attached to an IV bag and medicine at home and everywhere she went. The bag was too heavy for her to carry so she put it in a stroller and pushed it around with her stuffed animals on top.

Frontline part of treatment lasted eleven months and included several hospital admissions as well as many different types of chemo. Hospital trips were almost always twice a week with many visits lasting twelve hours. She has had around 20 spinal taps and 3 bone marrow biopsies, She has received blood and platelets 3 times. Finally, she made it to the maintenance phase in November. This phase is divided up into six cycles, each three months. At the beginning of each cycle (except the last two) is a spinal tap, steroid pulse, IV chemo, and both nightly and weekly chemo, for the first 5 days. The rest of the three months she takes oral chemo every single night and an extra chemo on Tuesday nights. We only go in for count checks once a month so things were seemingly somewhat back to "normal-ish," but her liver numbers started going very high in cycle two.

Ever since then we have been struggling. Her bilirubin has jumped up very high twice causing hypoglycemic issues, yellow eyes, itchy skin etc. Cycle 4 steroids coupled with high liver counts caused her hair to fall out a third time. That was the first time we cried over losing her hair. The first two were expected, but this past time was not expected and hit hard. The high bilirubin has caused gallstones and now they are discussing whether or not they want to remove her gallbladder. We are still waiting on that decision. They reduced her chemo and added a medication to protect her liver. So far it has worked, but I fear with the reduced chemo it could effect her relapse possibility.

So here we are, praying that her gallbladder can be saved, and that she doesn't relapse....ever! We pray that we can get back to normal life while making memories along the way. I had to quit my job at the beginning of treatment, and we have survived off of peoples financial help and we have made it so far :). While it has been an incredibly tough and challenging journey, we have made it a point to find the joy in everything! Joy is there, everyday, and no matter how tough, there is something to be thankful for. I do believe that that has helped her stay happy through it all. God has been so good, and while there have been bumps in the road, the bumps could have been so much worse.

I am the most thankful that we still have Alethia with us. She has been given a second chance at life, and we have had a whole extra year of memories with her! Her last dose of chemo is March 3, 2024, and we are beyond excited. We plan to do her make a wish trip right after treatment ends and to try to go on a vacation to really celebrate the beginning of a new chapter in her life.

To join CSI Athletics in supporting Alethia, you can donate to the GoFundMe campaign linked in the image below. You can also share the QR code in the image so that others can access the page directly.

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