Half Way There Livin’ On A Prayer

Matt finished round three of the clinical trial on 6/12 leaving three more rounds to go. Even though it seems he just started the clinical trial, Matt actually was receiving similar treatment prior to the trial officially opening which counted towards the total rounds required.

Overall the week of treatment in round three went well. We had to also fit in radiation treatment each day during the chemo sessions, but the folks at radiation are always very accommodating with fitting Matt in. His platelets were low once again so Matt had to get a unit of those on Friday.

As of this writing Matt is two weeks in with taking DFMO. So far we haven’t noticed any side effects. Though between chemotherapy, radiation, and DFMO it’s sometimes hard to tell which treatment may be causing any issues. One thing we do know is that generally a few days following this chemotherapy treatment his white blood cell counts plummet which generally give him random pains. This happened yet again this round and will most likely be an issue for the remaining three rounds. There’s a few things we’ve been trying to alleviate it, but the real relief doesn’t come until after white blood cells come back up.

DFMO administration has been going well. After three days of hand crushing 21 tablets a day I decided this is not a viable option going forward. I found an electric pill grinder on Amazon and it works great. It looks like a coffee bean grinder. Just load the pills in the top, press the button, and within seconds the pills are grinded to powder. In the morning we’ll mix it in with orange juice or apple juice, and in the evening we mix it in with lemonade or a sports drink. Matt says it doesn’t really affect the taste of things which is good.

Matt has now completed 11 days of radiation to his sacrum. Treatment will continue this week and should end on Friday finishing up the total of 15. The lung area still needs to have radiation done. That should be only 10 days and is yet to be scheduled.

Aside from having radiation done and a few doctor visits, we’re hoping this will be a week of recovery for Matt where he starts feeling better with more energy. The 21 day cycle usually happens this way where the week of chemotherapy is busy and tiring, the week after chemotherapy brings some pains and discomfort, and the second week after chemotherapy is when things start to improve for Matt.

Assuming he makes his blood counts on 6/29, Matt will start round four that day. If he doesn’t make his counts, round four will be delayed to 7/6. After round four sometime in mid July there will be a new suite of scans done to evaluate the progress.

Finally, on behalf of our family, thank you so much to all who have been sending meals, snacks, gift cards and other goodies. We are overwhelmed with your generosity. Jan and I very grateful as well to both come from large, generous families who have our back every step of the way.

Also we thank those of you have been donating to the Race To Cure Sarcoma. As of today Team Matt Strong has raised $3,885! These donations are what fuels research and clinical trials like the one Matt is currently enrolled in. Childhood cancer research in particular heavily relies on it. The sad truth is that only 4% of all government funding to cancer research goes to childhood cancer. In fact, only six new drugs have been developed for pediatric cancer in the last 40 years.

Childhood cancers are not common so they do not generate big profits for pharmaceutical companies. Without the big profits many drug companies aren’t interested in developing treatments leaving a gap for many kids and young adults like Matt.

Your donations matter.