It's that time of year again - Going Grey in May - for brain tumor awareness month. In years past, we've shared pictures, we've shared statistics. This year, I thought it might be helpful to peel back the onion and give you a peek inside the life of a brain tumor family. This post will also act as an update of the last few weeks.
See, that's the first thing about us - usually no news is good news, but sometimes no news is because there's so much going on that there's no space for an update. Tumors are like that too - you get lulled into a sense of safety & normality, no news is good news, but sometimes the tumor is just regrouping to wreck havoc.
Right now, our update doesn't involve tumor news, but that is why we do MRIs so often - to try and catch a regrouping before it becomes havoc.
What our update does include seems to start with parainfluenza. Jonah seemed to have a cold, just like everyone else - maybe not even a cold, could it just be seasonal allergies? The fever confirmed a cold and not allergies, but nothing some extra rest at home couldn't fix. And then, when I woke him after his second nap of the day, it was as though he had hung a "vacant" sign in his brain. His eyes were open, but he wasn't really there. Off to the Emergency Room we went. There were labs drawn, questions asked, images taken, phone calls made - and all the while, Anna was watching and observing, internalizing things shouldn't be.
The bummer about a lights and sirens ambulance transport is that if you need it, you're usually too sick to enjoy it and probably won't even remember it.
Parainfluenza isn't the flu, it's a nasty viral infection. When you have a history that involves neurological damage, sometimes nasty viruses take unexpected turns. As if it's not enough to have someone rummage around in your brain trying to save your life, causing you to need a walker, have facial palsy and learning disabilities - the gift that keeps on giving are in all the unexpected consequences.
A weird thing that can happen when you're sick, is that your sodium levels can get out of whack. There is something to all those Gatorade commercials trying to keep your electrolytes in check. There's lot of different reasons your sodium gets out of whack when you're sick. After brain trauma though, your body isn't as tolerant of those changes. Jonah's version of the paraflu really messed with his sodiums. Low sodiums were believed to be the cause of the "vacant" sign, the reason he could sleep all day. There is great calculated risk in correcting low sodiums - leave them too low, or let them drop to fast and risk seizures. Bring them up too high, or too fast and risk brain damage.
Did someone mention seizures? When you wear such a clear "vacant" sign, especially in the face of a complex neurological history due to brain tumor, everyone thinks one of two things. Seizure or recurrence. The tricky part is that sometimes it looks like just seizure even, but with more time you see that it was recurrence. A long and stable MRI later, and 3 EEGs, which showed no seizure activity, increase the theory that paraflu has messed with Jonah's sodium and altered his mental state, but his sodiums have recovered, so why hasn't he?
Now, you might be wondering about the other kids in this brain tumor family. Fear not, going grey in May is for them too. Because of new hospital rules, they are not able to see their brother and they are devastated to not be allowed to monitor his progress through their own lens or aid in his recovery more closely. They relive a splintered family between hospital and home. They choose to hang out in the family room at the hospital instead of adventuring the city, just to be closer to being together.
As parents, we try and keep things as close to normal as possible. We enjoy time together. We lean heavily into our community to be able to facilitate soccer, lacrosse, dance, rock climbing and all the other things that keep the normal feeling around. But all the while, we know that our pictures are incomplete - that although it may be sodium issues and paraflu today, the heart of why we are not together is because of a brain tumor from 4 years ago.
And then, after 7 days in the hospital, the "vacant" sign is gone and the boy is back. Whatever inappropriate hold paraflu had is starting to loosen. But, parainfluenza doesn't fight fair, and manages to give Julia pneumonia. Perhaps, if this strain can give a healthy child pneumonia it's not beyond reason that it has been the source of our great anxiety. Could it actually be as simple as a virus causing low sodium issues and not some regrouping before the havoc?
It seems, it is that simple. On day 9 we bust out of the hospital, ready to resume normal life. Ok, mostly normal life. You see, the sodium is still a little weird, so the best way to manage it is by limiting fluid intake, but to be able to be home - this seems a small price to pay.
Reunited! The siblings no longer rely on receiving information, they can see for themselves that their brother is actually better. We can be present as a family again. There is space and time again - room to breath. We have paid a high price for these moments, and everyone bears their own scars experience and emotion - but it only builds our gratitude for the return of together.
As quickly as things turn good, they can turn bad, or at least questionable. After being back in school for 3 1/2 days, a first time case of good old fashion pink eye hits. Turns out parainfluenza really is nasty and is often linked to pink eye. How is this even possible?
But you never know what is around the corner, and pink eye isn't as bad as the days to follow. The fatigue starts to set back in. The long naps and slow responsiveness - as though there is thought of rehanging the "vacant" sign. The siblings are on edge, we have only been back together for a week, but even they can read the signs.
On a day that should be all about moms, this mom leaves behind 3 scared and confused kids to mother the one who is most susceptible to sodium changes because of his brain tumor history. You see, the tests tell us that the levels are low and going lower.
That's the update, the onion skin peeled back. Surviving a brain tumor has left Jonah with new consequences that we are just figuring out on top of the old. Surviving doesn't mean that things get to go back to the way they were. Surviving a brain tumor means that the scars are not just physical, but also emotional - it means that the scars are not just those of the survivor, but of their family too.
To complete Jonah's update - after a Mother's Day trip to the ER we are home. They gave him a small supplement to adjust his sodium, and so he safe to be at home - for now. Tomorrow will be a day of doctor phone calls and plans. It will be a day of treading into new issues and new treatment plans, as it seems these sodium problems are more persistent than we'd like.
This year, an estimated 23,820 adults in the US will be diagnosed with primary brain and spinal cord tumors. Also, about 3,720 children under the age of 15 will be diagnosed. Brain tumor and other nervous system cancer is the 10th leading cause of death for mean and women, and the 1st leading cause of cancer death in children.
Those of us who have our brain tumor survivor with us are the lucky ones. There are scores of families mourning the loss of a loved one - adult or child - taken by a brain tumor. I hope that this has given you not only an update on our lives but a little look into what it means to survive a brain tumor. It is a hard survival, which is why we need better research, treatments and a cure, but we wouldn't have it any other way because together is always better.
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