The last 3 months have had its ups, downs, and everything in between. Since Dow began the clinical trial at KU we have been living 8 weeks at a time. He receives MRIs on this schedule. So while we have done our best to enjoy life, there has been an undercurrent of anxiety. Always waiting for the other shoe to drop when scan time rolls around.
I have learned in the last 9 months that fear of the unknown is far worse that what is known. Last summer, we had no idea what the future held for us. What I know now is that we have been able to lead relatively normal lives since diagnoses. We have been very fortunate that Dow has had minimal side effects from surgery, treatments, etc.
Last week that shoe finally dropped, and Dow’s MRI showed tumor progression. After a lengthy discussion with our local oncologist we decided to head back to Washington University in St. Louis to pursue other options. We returned home knowing we had several paths we could choose and the situation isn’t completely hopeless. After an emotionally charged weekend, we were informed this afternoon that he is not a surgical candidate at this point in time. This news is bittersweet. Another craniotomy is the best method of tumor elimination, but I’m not sure that my heart could handle such emotion again, so soon. It is now up to us to decide on which trial we are going to place our bets.
This is a horrific disease. It is all consuming, with no real treatment. It has affected every aspect of our lives and just as we were learning to accept our new reality, the consternation this development brings is devastating. We have started the grieving process all over again.
Even though this is a major setback, we know what we are dealing with. We’ve been living with a monster in the closet, but now we know what it looks like and it’s just a matter of keeping it at bay. Our 2 year-old has started noticing strange noises. When she gets scared, we remind her to see what it is, because she will feel better. This is the same way we are approaching this. The treatments may get worse, and the symptoms may be more prevalent, but we are prepared. The fear of the unknown is far worse than what is known.
A dear friend has recently started the TEAM DOW FUND in our honor. This is to help alleviate the increasing costs of treatment, medications, and now travel expenses. Below is information for those who wish to donate.
TEAM DOW FUND
608 Rosewood Circle
Raymore, MO 64083