Matti’s Journey Written By His Mom:
3 weeks before he was diagnosed, it started feeling bad but didn’t have a fever or anything that concerned us too much, so we brushed it off as lack of sleep. A couple of days after that, we were dropping him off to stay With his grandparents for a couple of weeks in TN but he refused to stay until he was tested for COVID because he was afraid he had it and didn’t want to get the grandparents sick. It was late at night, so we took him to the ER in TN where they diagnosed him with severe constipation and put him on laxatives. Two weeks later, we picked him up, but he still was not feeling well. After another week home, he was no longer able to eat and looked very sickly, so we took him back to the ER. That is when they found that his pancreas was 4 times its normal size and his liver was double, and his WBC count was over 200,000. They sent him to Prisma Children’s and that is where they diagnosed him with T-cell ALL and was admitted to the PICU. He had a port placed and they started his chemo. During his first LP surgery, he almost stopped breathing so he was on a ventilator for 8 days following the surgery. He was finally moved to the oncology floor only to return a few days later because he started having seizures. 24 hours later, they sent him back to oncology, but the seizures returned. He then spent a couple of weeks in the PICU while undergoing different procedures and taking several meds to slow the seizures. He also had C-diff and e-coli during all of this.
They stopped administering intrathecal chemo because of the seizures. Rather than finishing his induction phase, they just stopped. He was unable to start his consolation phase because they believed he would not survive the treatment due to his weakened condition. Instead, they gave him a couple of weeks to recover then started an oral chemo as a bridge to consolidation.
Ultimately, he spent 69 days in the hospital, lost 40 pounds and most of his independence.
He was admitted on 6/28 and was discharged on 9/5.
Now that he is home, he takes meds 4 times a day, has bolts feeds 3 times a day and continuous feeds every night. He has in home appointments with occupational, speech and physical therapists. He has somewhat started his weekly clinic visits, but they are not quite ready to start his consolidation phase just yet because he is still underweight.
Spending months inpatient creates severe financial strain on any family. Matti’s father made the decision to leave his position after Matti had been in the hospital for over 30 days. He decided to focus on Matti’s healing full time. Bills continue to accumulate for Matti’s family while their income has taken a major hit. If you would like to help this family, you can donate here. Every penny goes directly to this family and is tax deductible. More importantly that financial support is your prayers for Matti and his family!