A Rebirth Begins

It’s been a rough past few weeks for Matt, but today he reached an important milestone. He is officially in the monotherapy phase of the clinical trial. What does this mean? It means the chemotherapy treatments are now done, the radiation treatments are now done, and he is taking solely the DFMO medication as maintenance therapy going forward.

We met with the doctor this AM and reviewed the PET/CT and MRI scans, hearing test results, and echocardiogram results from last week. No activity being reported in the MRI of the brain and pelvis. The CT scan showed more improvement in the areas that were showing some activity in past scans. The PET scan did have a very small spot that lit up in the right lung, but the doctor was not too concerned as this could be inflammation or scar tissue from the lung radiation that happened. That spot will be monitored going forward just in case anything starts to develop. The hearing test showed no significant loss of hearing since the last hearing test which means no dosage adjustments need to be made with the medication he’s been taking. The echocardiogram showed no significant change with heart function, but we will have a call with his cardiologist this week to learn more.

Matt was low on platelets so we checked in at the Infusion Center to get those boosted back up. His ANC levels are now on the rise which is also good news as we can discontinue the daily shots. Matt is also now starting to eat solid foods again. He had gotten esophagitis from the lung radiation which is a situation where the esophagus gets inflamed making it very difficult to swallow foods. He lost over 10 pounds over the past few weeks so we are having him eat anything and everything to get the weight back on. His energy levels are starting to pick up again. You know his energy levels are low when his birthday presents from 3 weeks ago still sit unopened.

Going forward we will have weekly doctor visits for the next month as they check on Matt’s progress and vitals. Matt will continue to take DFMO daily (8 pills in the AM, 7 in the PM) for the next 30 days at which point they may increase the dosage. Sometime in the next month or so the doctors also want to remove the chemo port which has been implanted under his skin for the past 4 years.

This is all good news as things continue to move in the right direction. Needless to say it was a bit of an emotional day for Matt as he starts to process the reality of starting to get things back again. Getting back his appetite. Getting back to fishing. Getting back to hiking. Getting back to exercising. Getting back to visiting family. Getting back to hanging out with friends. Getting back to driving his car. Getting back his hair. Getting back the life he had to leave behind years ago. These are things most people take for granted. He does not. He calls it a ‘rebirth’.

On a side note as most of you know Matt is continuing to take classes at USF towards a criminology degree. He enrolled again this semester for several more classes. Unfortunately we found out the hard way that the Florida Bright Futures Scholarship he earned which pays for 75% of his tuition has been terminated on him. Apparently there is a 5 year term such that no more scholarship money is distributed once the 5 year mark hits since starting college. This is all well and good for the kids in good health, but for someone like Matt who has had to drop classes, withdraw from classes, skip entire semesters and transfer universities due to the aggressiveness of this cancer and treatment, I feel exceptions need to be made and laws need to be changed. I have emailed our local state senators and representative (Sen. Rick Scott, Rep. Laurel Lee, Sen. Ashley Moody) to sponsor a bill to extend the term period for Bright Futures Scholarship funding for children with cancer. Over 1,000 new pediatric cancer diagnoses are made per year in Florida. In fact, Florida accounts for 6 percent of all new pediatric cancer cases in the country. We need to do better for these kids. Unfortunately I have not heard back from any of our lawmakers. I will continue to pursue this.

Thanks to all who have donated and are participating in the Race To Cure Sarcoma on Oct. 3. Team Matt Strong has raised an incredible amount of money and more keeps coming in daily! I added a few buttons on the homepage regarding the race. One for general information, one which allows you to upload your fundraising/race day photos from your phone directly to the site, and one to view submitted photos.

Finally, as always our family is very grateful for the prayers you have been lifting up on behalf of Matt. Please continue to keep him in your thoughts and prayers over the next few months as we try to prevent another relapse from happening. Claiming victory over this cancer now would be like spiking the ball at the 50 yard line. Now is the time to be even more vigilant and targeted in prayer. Matt has put his body, mind, and soul through a lot of strain over the past few years. We pray that over time he can regain all that he has given up to fight this disease.

Life is fragile…handle with prayer.