Thursday, June 30, 2016

The Barbershop

It has been a very long time since I have posted an update.  For this delay I am both sorry, and not sorry.

I am sorry, because I know that many (most) of you have been faithfully following Mark's story from one post to the next, keeping appraised of his victories and challenges, and to have dropped those updates without warning before his treatment was complete was not very kind.  I am sorry.

I am not sorry, because the year of his treatment and six months of recovery to follow has been devastatingly brutal on our family, driving all of us to the brinks of emotional and/or physical exhaustion.  If we had needed to keep going, we would have, of course, but seeing a light at the end of the tunnel of this course of treatment sort of set a finish line for us, and we allowed our reserves to be expended at the finish line, and figuratively pretty much collapsed at that point.  Not even two months later we were forced to make an unplanned move when our landlord unexpectedly decided to sell the home we've lived in for seven years.  Keeping the followers appraised at that point was not a priority any more. As a family, we needed to hide and recover for a while. I am not sorry.

Thank you for understanding.

It has been over six months since Mark's chemo ended.  He has rebounded, well... remarkably.  If you had not previously known what he went through, you would not see any outward sign of his fight and his recovery.  His strength is not all the way back, but he is fully functioning again and able to take care of himself.  He's been seen to occasionally do some climbing on playgrounds and in trees.  His cognitive functions appear outwardly to have returned to normal, but internally he still gets frustrated when he tries to concentrate on something hard.  He still spends more than the normal amount of time resting, but he has been good about pushing himself to do more, and needing to rest is a reasonable outcome of that.

He is completely off of all of his medications now, his weight has returned to near normal, and a few weeks ago we got the results of his second post-chemo MRI.  Thankfully and praising God I can report that his scans are so far still all-clear.  Last week he was able to attend Camp Ukandu, a weeklong summer camp for survivors and siblings, something he really wanted to do last year but was not strong enough to participate.  He had a great time, it was a superhero-themed week.  He wore his suede shoes and apparently unveiled some notable dance moves at some point.  The camp newsletter was released with an article about "Firedrake" (Mark's camp name), and going into detail about his new dance superhero identity: "Super Suede"!  Camp Ukandu's volunteer staff is largely made up of the oncology staff of nearby hospitals and clinics, so a fair number of the counselors and camp staff were already known, something putting any new camper to ease.  Mark's primary oncologist, Dr. Jason Glover, may have had Mark's favorite camp name: "Pond Scum".

And then yesterday, for the first time since the end of Summer 2014 shortly before his diagnosis almost a year and a half ago, Mark required the attention of a barber.  Since his hair all grew back in at the same time, it was mostly normal on top but very shaggy in back.  His hair has not grown back in its original red, but rather a dark brown, more like the rest of the family. It may or may not eventually return to its original color.  I forgot to get a picture of him post-trim, but here he is just prior.  Pay no mind to the red coloring in front of his ear, that is a vestige of the paint he had applied as part of the Super Suede persona.  Several showers later, it still hasn't come all the way out yet!  Visiting the barbershop seemed mostly insignificant at the time, but when considered fully, the barbershop visit was a huge milestone.


In closing, again, sorry but not sorry for the long delay between posts, I trust you all to understand that.  But from the bottom of our hearts, please know how grateful we have been and continue to be for your support and prayers.  Mark is still not out of the woods long term, but it is nice for now to be able to exhale a while, and for Mark to get back to being a kid again.  God bless you all.  More pictures below.

Mark as a seagull in CYT's production of "The Little Mermaid",
one of several ensemble parts he played in the show.  Dancing and singing,
he was able to keep his energy up through all the shows!

S'mores with the family in the backyard of our new home.  Left to right:
Johnathan, Mark, Wendi, Jim, Gabriella, Joseph.

Joseph, Mark, and Gabriella enjoy some ice cream at Baskin Robbins on a pleasant summer day.



Saturday, December 26, 2015

Memory Stones

It has been hard for me to get this latest update posted.  Not because of bad news, but because we have all just been so exhausted.  Things are winding down somewhat now, but we won't know for quite a while if it is a conclusion or merely a respite.  It has been a long, emotional, difficult year, but with the support and prayers of so many of you, it has been a journey we were able to make to this point without falling apart.  I frequently remembered this needed to be updated, but could not work up enough emotional energy to sit down and type it out until now.  Please accept my apologies for taking so long to get to this.

Our last post was about Mark heading into Round 6 with things looking pretty good.  And true to hopes and expectations, he made it through #6 pretty well.  However after chemo was over, he hit a frustrating bump in the road where he once again tested positive for C Diff, and also was hospitalized for a new infection: MSSA.


You may have heard of MSRA (Methicillin-resistant Staphylococcus aureus), the better-known and more dangerous brother of MSSA, but with MSSA the R for Resistant is replaced with S for Susceptible.  The symptoms are no fun, he had a high fever that took longer to clear up, mouth sores, serious swelling of his face, and a variety of other problems that kept him admitted for about a week, and he was visibly tired when finally released.  But as the S for Susceptible states, this infection was susceptible to the antibiotic Methicillin and treatment was able to fight it off.  Mark was on heavy treatments at home for a long time, including IV administration of antibiotics, it was pretty rough.

Following treatment, Mark's NG tube had a problem and we removed it.  Staff wanted it back right away if Mark wasn't able to put on weight, and Mark wanted to keep it out as well.  For a couple of weeks he was able to just barely make the grade to keep it out, but it was a struggle, and at one check in he had lost weight again, so the tube was put back in.  Mark was not thrilled about it, but I think he reached the point of resignation and relief, that he would not have to try so hard to eat.  We only run it at night, so he doesn't have to lug the pump around by day, and it seems to be working well.  His energy level has rebounded dramatically since the end of chemo.

Now we begin the recovery and rehab phase.  Mark is still underweight, having lost so much muscle mass while laid up for almost a year, and his coordination is hampered by both the inactivity as well as the chemo and radiation, but he is back to dressing himself, and it was a big day when he tied his own shoes again.  He doesn't seem to have lost his touch at video games much, and they are sort of good for his fine motor control of hands and fingers.  He used to appear frail, stooped, and had some tremors when standing, but now he stands up straight, alert, and firm.  He has to be careful when navigating hazards on the floor, but the days of a walker or wheelchair are well behind him.

Last week we were privileged to be granted a stay at the Alexandra Ellis Caring Cabin, a peaceful and well-hidden retreat residence on the Oregon Coast just outside of Pacific City.  It has a separate activity building for the kids with pool and air hockey as well as a couch and entertainment center, and lots of toys, and it also has a bedroom above it.  The main house is a gorgeous getaway with high ceilings and lots of windows, which overlooks a small private lake outfitted with kayaks and canoes.  It has a master bedroom, a guest bedroom also cross-outfitted for families taking care of infants, and a brightly-colored children's room complete with a high loft and additional beds.  The game room in the house is loaded with all varieties of books and games, more than you could possibly get to in months.  We were able to bring several of Mark's friends along with us for the stay, and a lot of wonderful memories were made.  If you are searching for a good charity or cause to support, may I recommend this facility, operated through the Childrens Cancer Association, as a strong candidate?  Being able to stay there and take a break from everything was an absolute Godsend.



When you arrive at the Caring Cabin, just inside the entry you find two river stones engraved with your child's name and the current year.  You get to take one home, but the other you are supposed to place on the property, in a visible location along the path from the house to the lake.  Walking this path and seeing the memory stones is a very powerful experience.  You think about all of the trauma and trials you've gone through with your family and see that you are far from alone.  You can't help but wonder about each of the heart-wrenching stories of despair and tales of miracles, with everything in between, that each stone represents.  As you look upon each child's name, you wonder if they survived, or if this stone represents one of their final wonderful memories.  I've put down a few words to try to describe it, but no words could ever equal the experience, so I will leave you with these images... I encourage you to click upon some of them to see them full size.  God bless, and thanks for all your continued prayers and support.




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

Weariness

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.

Saturday, September 5, 2015

Updates, typical post-round hospital stay

A couple of quick updates copied from our Facebook pages for you, sorry for the delay in updating after the previous very stressful post.  Mark is back in the hospital again following Round 4, which is of course not very fun, but not quite as much a big deal as what we were worried about a week ago.

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Wendi
September 1, 6:37PM

Just realized we left everyone hanging last week. We ended up spending an extra night in the hospital so a CT scan could be done. The CT scan showed no air! The doctors weren't exactly sure what happened, but we are so thankful for everyone's prayers. We were able to come home Saturday afternoon. Since then Mark has been doing well - he had even gained half a pound when he went in to his appointment today!!! His platelets were quite low today, so he had to have platelets. He had quite a bit of pre-medication and did fine. He even managed to get some homework done today. We are so, so thankful for this period of sunshine. Love you all!


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Frank
September 2, 9:21AM

Some have asked if Mark will be back in school following treatment. Actually, he is back in already, as the school year has begun. We are keeping him in motion so that rehab back to normal speed after Christmas won't be such a marathon.



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Wendi
September 2, 4:44PM

Back in the hospital for what seems to be our requisite post-chemo "unplanned" admit. Mark woke up not feeling great. Meds helped a bit and he made it through the first part of the school day before he started to complain about pain in his stomach and head, followed by my noticing he felt warm. Fever of 100.9 around 1, 101.9 at 2, so they told us to come in. It was up to 102.8 when we got here. His counts are low, so it's an automatic 48 hour stay.


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Wendi
September 5, 12:10AM

Still at the hospital. Mark's oxygen levels dipped on Thursday and required "blow by" oxygen for most of the day. Friday his levels were better, but there was crackling in his lungs, so they ordered an x-ray. The x-ray was clear so they gave him some medicine that encourages the release of extra fluids from the body. He had what is known as wet lungs, which is when they flood the body with fluids to help bring the fever down, etc, but some extra settles in the lungs. They sound clear now, and although his oxygen levels are not back up to his typical 99/100%, they are much improved and considered passable. The doctors said there was a slight chance we might go home on Saturday, but more likely they'd keep us for the weekend in hopes that his blood counts would start coming up.


-----

As of this afternoon, Mark's fever bumped back up over 101, so Sunday or Monday is presently his next reasonable shot of coming home to recover before Round 5.

Friday, August 28, 2015

Spoke too soon

Mark was all cleared to go home from Round 4 this morning, but a few tests remained that didn't quite get wrapped up in time, pushing his departure later into the day.

An abdominal x-ray was performed yesterday that found no obvious abnormalities other than a little acid reflux, which was more or less expected.  This was part of an overall investigation to see if there was something unknown contributing to his difficulty eating and keeping food down.  Since that came up with no obvious causes, other tests were planned that didn't get done until today.

During an ultrasound done this afternoon, small air pockets were found around the veins in his liver.  We don't know much about what this means yet except that the ultrasound doctor indicated that in some cases it can be very serious depending on what caused it.

So, in order to investigate further and get a handle on the situation, Mark is being scheduled for a CT scan tonight, pushing his return home out by at least a day.

Spoke too soon about how easy things were going.  This has the potential to be a very serious complication, but we hope and pray that the outcome is otherwise.

Thanks for reading.

Thursday, August 27, 2015

Round 4

Contrary to expectations it feels like the chemo rounds are getting easier. Perhaps it is because, as we were told before, the first round or two can be bumpy as things are figured out, like what meds work, how diet goes, and learning to navigate the treatment in general.

Mind you, although his Round 4 chemo has now been administered, there is probably a complication or three coming up in the next couple of weeks.

Mark tends to sleep during his chemo days at the hospital. A new medication he is being given this time seems to be making a world of difference. He is still barely eating, instead still getting fed through the NG tube, but nonetheless is reporting barely any nausea and no pain. He was awake today for about 16 hours save for a single short power nap. His mood is very good, and he still makes the nurses laugh.

With school starting up, it was necessary for me to switch out with Wendi on Wednesday night and be the bedside parent, and we have watched movies, as well as some Dr. Who and MST3K, played some 5-card stud, he's worked on logic puzzles, and we have just enjoyed some nice chats.

One sign of too much hospital time was that when I arrived at the hospital Wednesday night, my first time back in about a month, the girl at the security desk spotted me while dealing with other people. While still talking to them, she looked up Mark's room and had my security badge ready before they left. She held it out to me as I approached, before I could say anything. I hadn't even known what room he was in until then. Hope the hospital knows she's a keeper.

All signs point to going home tomorrow, and then hunkering back down into his at-home medication regimen, and hoping the side effects remain manageable. The feel-good moments of an uneventful hospital stay will most likely give way to issues while back home, so please keep Mark in your prayers. Thanks for reading.