Bad, Bad, Good!

Sally does such a good job with this blog that I have not wanted to defile it with my commentary that often but I have some things to share. First, the difficult. A few weeks ago Tate had a follow up MRI appointment and then a consultation with the doctor a week later. This was scheduled prior to his 18th birthday at the advice of Dr. Keole from Mayo Clinic in July 2018. He advised us to schedule this appointment at this particular time because insurance companies really just don’t mess with claims when it comes to pediatric oncology. They don’t necessarily auto-approve everything but they question the medical necessity of tests quite a bit less when the patient is under 18 and the tests are cancer- related. While Dr. Keole did not expect to find anything on the MRI (and don’t worry, his MRI looked really good), he wanted to run one just as a precaution and as a follow up to the cranial radiation Tate received a year and a half ago. I could not attend the MRI appointment due to work but took the day off to go to the consultation the next week which was also the day of this month’s chemo infusion. Sally was there for both appointments.

Going back to Mayo was very difficult for me. It is a beautiful building with amazing staff but physically being in that place made me almost sick to my stomach as soon as we pulled up and I have been trying to sort out why. I figure it this way, going back to places where you experienced trauma or where traumatic events occurred can bring back a lot of emotions, fear being the overpowering one for me. I have managed to keep these emotions neatly tucked away and conveniently suppressed. When things get too difficult to deal with I think it is probably normal to go into a kind of survival mode. For me I simply turn off the emotions so I can deal with the events that I must. I have always had a talent for that but it comes with a cost that you eventually have to deal with down the road. I think that is partially what I felt at Mayo this last visit and in the days that followed. I was surprised by this sickening feeling so I mentioned it to Sally who told me that she felt the same way the first week when she went there without me. She said that having me there for the consultation made it easier for her. This made me feel better and reminded me how important she is to me. While we each have our own coping mechanisms it has been so important to be able to lean on each other when we need to and I am very lucky in that regard. With our anniversary coming up next month this is my very public way of saying thank you for being there Sally – I love you.

Whoa! I thought this was supposed to be a blog about Tate. I’m not sure where that squirrel came from but I’m back on course. So part two of the difficulty of this Mayo appointment was hearing and coming to terms with the lifelong side effects of radiation. They did warn us a year and a half ago about his greater than average risk of developing meningiomas (small tumors that form on the lining of the brain just inside the skull) and the importance of routine MRI’s for the rest of his life to catch them before they get too big as well as the early onset cataracts he will almost certainly develop in his 30’s. Hearing this again when we are in a different state of mind was kind of like getting punched in the gut when you just got up from being knocked down. I think part of it is that we are starting to have conversations with his medical team about the end of treatment and survivorship and looking forward to a life without all this. Whereas when they explained it the first time we were just thinking “save our son – whatever it takes.” Of course, the silver lining here is that we are where we are now and have moved on from that other place. By no means can we relax but we are moving forward. So, on to the good part of this update.

Tate got his driver’s license! This past Friday I took another day off work to take Tate down to the DMV, wait in line forever, get yelled at by the scary lady at the counter because we didn’t have all our forms in the right order and to take his driving test. I couldn’t believe how nervous I was for him. I went outside and watched the first part of the test which involved the driving instructor having him do a few competency tests before even getting in to the vehicle. Then the instructor got in and as they were leaving the parking lot I started wondering how many driving tests resulted in collisions and how dangerous that instructor’s job actually is. They came back after what seemed like an hour and Tate was all smiles. Since the test he has driven himself to his friend’s house and to a cello lesson. Today I expect he has already driven himself to school. It is amazing to me knowing that he is experiencing the sense of freedom that we all experienced the first time we started driving on our own. It is another thing to be a little nervous about as he still needs some more experience and we have asked him to keep the trips close to home but at the same time it is a huge step forward that will only help him continue his progress. Sally is determined to continue to get him into different supervised driving conditions like rush hour traffic, downtown city driving, etc. For me, I am just proud to see him advance in another way and I hope being mobile has a similar impact on him as it did on me.

So there we are. This was mainly an update on where I think we all are mentally. It is that scary state of cautious optimism where you feel like you can start to breathe a little but not too deeply because you could still get the wind knocked out of you at any moment. Tate driving himself to cello lessons and to school is another opportunity for him to grow and learn and live and that is pretty awesome

-G