Since my last post Titus has spent 2 days in the hospital and begun Interim Maintenance #2.
Monday August 27th Titus complained about his mouth hurting around 5pm, by 7pm he had a temp of 102 which meant we were headed to Children’s Mercy ER. Since his ANC was still only in the 200′s, his fever got him admitted and put on IV antibiotics for two days. We are not sure but it looked as if he was getting an abcess in his mouth. He was discharged that Wednesday with his ANC almost at 500, and by Friday his ANC was high enough to begin his next round of treatment on Tuesday, September 4th.
Titus began the last round of his weekly treatments, also known as Interim Maintenance #2. Like I’ve posted previously, this consists of two lumbar punctures with intrathecal Methotrexate (first day and 32nd day) as well as IV Vincristine and Methotrexate every 10 days (approx).
Beginning sometime the end of October we will begin Longterm Maintenance (LTM) for the next 2.5 to 3 years. This will include home chemo pills daily (6-MP), lumbar punctures with Methotrexate every 3 months, IV Vincristine, and 5 days of the steroid from hell every month. Now, since Titus is participating in a study, he may be randomly selected to have the Vincristine treatment every 12 weeks, instead of every 4, but we won’t know that until we begin LTM. They are trying to determine if treating with Vincristine every 12 weeks will have the same effect but without as many side effects, I am praying that he will be put where he needs to be.
Titus’ head is getting fuzzy again with new hair growing! He’s very excited about that
We are enjoying our little family and so very grateful for all that we have been given. Thankful that through all of our trials, we have never been alone. Thankful that Titus has done so well and continues to do well.
Please continue to keep him in your thoughts and prayers…Specifically that we can keep our family healthy through the winter and that he will continue to have minimal side effects.
