We’re thankful Susan’s scheduled MRI last week once again showed no evidence of tumor growth. With about 18 months since her last tumor progression, she’s had a long respite that’s allowed us to tackle the lesser issues as they come along, like another recent urinary tract infection. I would have been surprised to have bad news on this MRI since Susan has been feeling better lately and doesn’t have the symptoms that would signal something’s wrong. She’ll return for her next MRI and oncology visit in June.
The weekend before Easter, we enjoyed spending time with the UCLA neuro-oncology team once again at their annual brain tumor conference. On Friday I went on my own to the lectures that have more of an academic flavor and offer tons of great info from every specialty area relating to brain tumors – oncology, pathology, radiology, surgery, radiation oncology, chemotherapy, and so on. Since a new patient or caregiver has so much to learn when entering brain tumor world, an event like this can really fill in the knowledge gaps and provide a better foundation for fighting the disease. With my third time attending, I found my knowledge base pretty well intact and didn’t need to hang on every word like before. My big take-away once again is that there are unique differences among patients with brain tumors even of the same type, researchers are learning more about them, and this knowledge will surely translate into better treatment options. Researchers like those at UCLA are gifted and relentless, so I'm confident the “cure” for cancer will be found in these individualized treatments.
On day two, Susan, Lexie and I attended some of the interactive workshops and had an opportunity to participate in a panel called “Understanding the Family Experience.” When it was our turn to share, I summarized Susan’s story and treatment history and shared that it was important for us to accept the situation early on and trust the Lord with the outcome, while praying and pursuing every avenue of healing – in fact, our hope in God is the very strength that has gotten us through. I also thanked fellow panelists Steve and Shawna (she’s also a 3-4 year survivor) for their suggestion at the 2008 conference that prompted me to start our kids with some trauma counseling. In our case it was more prevention than remedy, but it put me at ease that our kids were doing well.
Susan and I were proud of Lexie, who shared bravely on the panel about her experience and showed her maturity in handling what still is a hard situation. She spoke about the difficulty and loneliness she felt when Susan was first diagnosed and told of some of the adjustments she had to make as a college freshman immersed in a life-threatening family crisis. It was a privilege for us to share our story and comfort other brain buddies with the comfort we’ve received. Also it was good to see Lexie become reassured from being with other brain tumor patients and their families and meet some of the UCLA team who cares so well for her mom. The conference displays the best of the human spirit as patients courageously navigate their brain tumor journeys, caregivers offer aid and support alongside them, and doctors offer care and wisdom as they do their best to get everyone through it.
Tomorrow, Susan will have outpatient surgery to have her port-catheter replaced. It’s served her well for three years and otherwise could stay put for blood draws and most IVs, but it can’t handle the thick contrast solution she needs with every MRI without risk of getting clogged. She’s endured countless (because I haven’t counted them) needle sticks on her left arm that’s now loaded with scar tissue. As great as the radiology nurses are at finding veins, Susan is running out of targets. She’ll be getting a power port that can handle not just the thick contrast solution for MRIs, but also the thicker stuff for CT scans if need be. There’s some risk with any surgery, but we’ve decided since she’s feeling stronger now and will need more MRIs, this is the time to do it. As always, we thank God for keeping us and thank all who pray for and support us.
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