Sunday, October 18, 2015

Home stretch

Last week, Mark's labs came back looking good, he was released to normal activity at least to the extent he felt able, and was able to stop getting Neupogen shots to boost his white blood cells for now.  He's spent this last week feeling pretty good, playing on the Wii, eating a little better, and today we even saw him physically goofing around with brother Joseph for the first time since maybe back to when it all started.

Mark won a prize playing hospital bingo during his last stay.
We had to go in and get his NG tube replaced on Thursday, and he was in a great mood, friendly and charming the staff.  On the way home he asked for a Doritos Locos taco from Taco Bell.  Since he has trouble eating sometimes, I wasn't sure if he would change his mind in the ten minutes it took to get one, but he ate nearly the entire thing.

And now, at last, we are coming up to Mark's 6th and final scheduled chemo round, which starts Tuesday.  After reviewing the audiology test results, we found out that they are reducing his chemo this round by 25% or 50% so as to not cause excessive additional hearing damage.

This led me to a question. If I had to choose between no cancer or no hearing, I think we would all probably agree that no cancer is preferred. So I asked Dr. Glover about this, about why we would back off chemo to address one problem at the possible expense of not addressing a bigger one, and ended up learning a lot more about Mark's progress, especially relative to others going through similar chemo regimens.

According to Dr. Glover, many (most?) kids getting the regimen of chemo cocktails that Mark is getting are not able to finish all scheduled rounds.  You see, it is pretty common to have delays between rounds, waiting for cell counts and health to recover enough for the next round.  Although Mark has been hospitalized in between every round so far, usually for fevers, he has recovered quickly enough every time to be ready for the next one on schedule. In fact, sometimes kids start out OK but as they go on through rounds, they need longer and longer to recover from each one, yet Mark's counts recovered well enough after Round #5 that he was cleared for Round #6 a full week in advance.

Worse than delays, though, are the kids whose bodies are unable to tolerate the chemo due to other damage.  Some kids have to end chemo early due to organ failure; problems with the liver or kidneys in particular.  The point gets reached, prior to finishing the rounds, where the chance of organ failure is greater than cancer relapsing, and treatment is stopped.

For Mark, as Dr. Glover put it, he has done so well through these five rounds, and his most recent scans look so good, that the "tumor board" at the hospital feels that there is greater risk to Mark's quality of life from hearing loss than there is from a cancer relapse by backing the final round down a bit.

This is where I stop and take a breath and look around at how far we've come.  A little less than a year ago when we found out, the initial diagnosis was that Mark's tumor was inoperable.  Our daily routines of life stopped, and every other moment was a heart-wrenching realization that everything had changed.  After it was determined that surgery was an option to try to get ahead of it, 5-10 year survivability was pegged at around 50%.  Mark survived a very scary lengthy brain surgery that required two neurosurgeons, who were able to get 70-75% of the tumor out and buy us a lot more time.  From there, we were able to get Mark approved for advanced proton radiation therapy in Houston to limit tissue damage from "exit radiation".  Halfway through chemo, the tumor was no longer visible on the MRI scans.  We've become "accustomed to the water" and it is no longer a shock that keeps us from functioning.  Through it all, Mark has been strong and resilient, and has stayed healthy enough to remain on schedule, and I am sure this is largely because of his great attitude. And now the risk of a cancer recurrence has diminished to the point that the staff is more concerned with his hearing. Praise God, can I get an "amen"?

I had to reflect also on the serendipity, the blessing, of how this was discovered.  If Mark had not been the crazy outside-barefoot-with-a-hatchet kid that he is, the chances of him clobbering his head while playing would have been greatly diminished.  Without suffering that concussion, his body would have compensated for the tumor without us aware for much longer. And if that tumor had manifest nearly anywhere else in his brain than in front of the cerebellum, it would not have blocked the CSF drainage to generate headaches quite so early, again discovery would likely have been long delayed.

While these are times for hope and appreciation, we also need to remember that this type of cancer is a very nasty variety.  At some point down the road, recurrence is a good possibility.  For that reason, Mark will always benefit from your prayers and thoughts, and especially from your direct encouragement. Mark will spend the rest of his life having to pay attention to what he eats, to take care of himself and exercise well, and will need to undergo an MRI about every six months to keep an eye on things and give us the best chance of stopping a future problem.

This journey has been difficult for everyone in the family, and sometimes our frustrations and weariness causes some friction at home, but I believe this has also brought us closer and given us a greater appreciation for every day and the gifts we've been blessed with.

This journey has also gloriously revealed to us the unimaginable lengths to which our friends and family will go to help us.  Childcare, meals, hugs and messages of support, financial assistance with the expenses not covered by insurance, transportation, prayers... I am sad to know that I will never be able to remember every instance of love and compassion shown to us so that I can reward each one with a thank you note and personal appreciation. Instead, what we can do instead is make sure we pay those blessings and gifts forward, to help everyone we can in their times of need, with whatever it is we can do to help. I think we always considered ourselves the giving of help type, but these months have taught us so much about how much more we can do, and we will.

Unbeatable attitudes go a long way.
This Tuesday, Mark goes in for Round #6, the final round. The light at the end of the tunnel has appeared. We're tired, but thanks to all your help, our family will make it through this trial, and be able to use our experiences to help others in the future.

Remember Mark's wishes, to remember that the people you meet every day are not "NPC"s (non-player characters in a game), but are each real people with their own real life stories, with real problems that we don't know about or understand, but who still deserve our compassion and respect. Practice random acts of kindness and forgiveness. Be nice.

Thank you for reading.

Tuesday, October 6, 2015


Round 5 went by so uneventfully that I never really knew what to post about, but I was feeling the long delay between updates, sorry it took so long.

The chemo is taking its toll, no doubt, but we seem to be getting used to the routine. There were no surprises or complications during Round 5, it was in on Tuesday, out on Friday, and feeling good that - so far - Mark has held up well enough that they have not delayed any treatments, though the margin of tolerance was pretty thin this time.

As per usual, however, Mark had a fever start up the week after Round 5, and I brought him in last Wednesday. It cleared up quickly, Wendi and I switched out, and Wendi brought him home on Friday. It popped right back up though, and Mark was admitted again less than 12 hours later.

The hospital is great, the staff is the best, but Mark just wants to be home. Friday night was tough, and he broke down with Wendi about having to come back in again.

Right in the middle of the whole show, my car broke down on Saturday morning on my way to work, and it is still in a parking lot between work and home. But we switched again and I'm in the hospital with Mark at the moment, so I don't exactly need it right now, haha.

This morning Mark had a routine hearing test, to measure how much loss the chemo is causing, and the results showed a pretty sharp decline. Not unexpected, but still disheartening. He's not going totally deaf, but hearing aids are now pretty much a given when this wraps up.

Times like these are, as I described to one friend, adventurous tests of adaptability, and so far we are doing OK with it, but the weariness is creeping in.

We ran into Mark's neurosurgeon today, which was a nice unplanned visit. He repeated what we heard last time, that Mark's last set of scans looked pretty good, so there's that.

One more round to go. With luck and good fortune, and with the help of your prayers, we are hoping to be headed towards normalcy before his birthday and Christmas. At least what our new normal is becoming.

Thanks for reading.