Prior to Duke trip 10/21/13 (sorry for the formatting, blogger is having issues)

Hello….anyone still there??!? I know I haven’t been writing much at all but in the brain tumor world that is a VERY good thing, it means things are boring and boring is always good! Since our last trip to Duke in June nothing has really changed. Rion had his local MRI in August which of course showed no new enhancement and is stable compared to the last one. He still has his mini/partial seizures sporatically but we are both comfortable with the frequency/intensity and do not want to monkey with his medication dosage to try & control them. So truly nothing new has developed. We do have a few things that we wanted to share… 1) Neurological testing: At our last appointment at Duke we pressed the PA to set up the neurological testing that was supposed to have been done some time last year. This would be to get a ‘baseline’ idea of how Rion’s brain is working to compare future tests to if we suspect there is change. It is a very lengthy & tedious process- the test is done one on one with a neuro-psyciatrist and usually takes 4-6 hours. Logistically it was almost impossible to work out- the test was going to be too draining to do in addition to our normal trip so it would involve a separate trip back to Duke sometime between June & October. In August after careful consideration we decided not to pursue the testing at this time. Logistics aside, we weren’t in a place financially to pay for another trip that we both didn’t feel was necessary. We know from the basic neurological exam that Rion has each time we see the neuro-oncologist what his strengths & weaknesses are- he has some coordination issues, his short term memory is a thing of the past & whatever you do, don’t ask him to subtract double digits in his head (we laugh about the last one because they ALWAYS give him the same math problem so he just memorized the answers which totally impressed them in June.) But physically he is great- his reflexes are good, no muscle weakness and on the outside he is still the model of good health. We may decide in the future to have the neurological testing done, specifically if an issue comes up that we are unsure how to treat, but for now we are confident in our decision to hold off. 2) Speaking of outside vs inside heath. Rion has developed a new (yay!) health problem that we assume must be a result of all of this somehow…high blood pressure. All throughout surgery, radiation, chemo his blood pressure remained great usually right under 120/80 but right after Grant was born in April it has slowly start to creep up. At first it was assumed it was due to the stress & lack of sleep from having a new born, but even as Grant started to sleep better & we feel into (kinda) a routine, Rion’s blood pressure continued to increase. At one point in August he tested it at a pharmacy one Saturday and it was 145/90- YIKES! Luckily he had an appointment at his local oncologist (who he was still seeing every month for blood work & refills on his medication) already scheduled for the following week so he brought it up then. They agreed it was probably best to prescribe him a blood pressure medication (Lisinopril 10mg) since it did not appear to be getting better on its own. In addition to the medication, we are also striving to eat a low sodium diet and limit alcohol & sugar. Striving is a good word to describe what we’re doing because with a baby & me going back to work, eating healthy is hit or miss these days. But the good news is that Rion has been checking his blood pressure periodically and so far it’s trending down. Some days are better than others but at least it’s not going up any longer. 3) I can’t remember if I brought it up on the blog before or not (and I’m too busy to look right now…) but back in December of last year we doubled Rion’s anti-depressant. He has been on Celexa since diagnosis 11/2011- always taking 20mg once a day. When his grandmother passed away unexpectedly December 2012 plus me being pregnant he really started struggling so we changed his dosage to 40mg once a day. It definitely helped but unfortunately it came with some undesirable side effects. He backed off back to 20mg about 2 months ago and while the side effects are gone, and he is not necessarily depressed, he has had a noticeable change in his temperament. He is much quicker to anger and has a pretty wicked temper. With all of the changes going on & the accompanying stress (I went back to work in August at a new job which is across town after being off work for 4 months, Rion is working full time again, and Grant is teething) it’s hard to tell what is depression/anxiety & what is normal stress. But we will talk to Duke about this and I think try to switch his medication to see if we have luck with another one. I think that is pretty much about it. Because this blog was started to document our journey treating Morton I hesitate to share much about our lives now that Morton isn’t the focal point. But I do think it’s important to point out that we ARE living a normal life for the most part. Rion is a wonderful daddy to Grant, just listen to the way he talks about him and you can’t help but notice the love and pride in his voice. From a medical point of view, the only effect Morton has on his parenting is sometimes his memory & attention span isn’t functioning at 100% (but that is probably true for most new parents.) Rion works really hard to overcome this- from making lists to making sure we keep everything in a specific place, we do a good job in making these things a non-issue. There have only been 1 or 2 instances where he did something that could have been dangerous (and nothing bad happened so it’s hardly worth bringing up.) I guess my point is that the best advice we’ve received along this whole journey was how important it was to keep living our lives like we normally would- plan for the future, don’t put off major decisions, just keep on keepin’ on!