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.

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.

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.

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.

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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.

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.

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.

An Update and Reflections on Hospital Life

First, a quick update for those who want "the facts, just the facts". Mark and I are back at the hospital for chemo round 4 of 6. At this point he has gotten his Vincristine and his Cisplatin for this round. He will have two more days of chemo and then we should be able to head home Friday. So far, this round is quiet, although that is the norm for day 1 now that they have him on Emend and a steroid in addition to his regular nausea meds. We also so audiology this morning. This protocol requires Mark to receive a hearing test between every round because of the high likelihood of hearing loss that comes with some of the chemo drugs he's on. So far there had been no change in his hearing, but today he did show a "significant decrease" in both ears, more so in the right than the left, but only in the high frequencies. It is very common, as I understand it, for children on this protocol to end up needing hearing aids. If the hearing loss gets bad enough, they do adjust the amount of chemo, but we are not near that point yet. Otherwise, things are progressing "well".

Now, for some random thoughts...

Regularly spending multiple days at a time in a hospital is an interesting experience. I was reflecting on it this evening as I took a lengthy shower with no worries that anything was needing my attention elsewhere. There are actually a number of good things about this stays which act as a nice counter balance to the bad things. I think the good things boil down to basically two categories: more limitations and less responsibilities.

It may seem counter intuitive to speak of an increase in limitations as a positive thing, especially in our consumer-driven, always-wanting-more-choices society; but an increase in limitations brings with it a decrease in stress and time spent making decisions. When I am at the hospital, I have a limited wardrobe from which to choose. Of course, I had to make decisions when I packed, but once I'm here, I only have what's in my bag as possibilities for my wardrobe (which of my two pairs of jeans, which of my two pairs of pajama pants, which t-shirt to wear with my jeans). No sorting through multiple skirts and pants choices, trying to decide if I want to dress up or dress down today. I have what I have, and that's it. I also have a limited number of food options, which quickly shrinks to only a few choices if I want to be "good" (which I don't always want to do while I'm here, btw). There are limited options as to where to get food and when each option is available. This makes choosing what to eat much simpler. Thankfully the food here is very good, so low quality is never an issue; there is always something tasty to have. I also have limited options on how to use my time. Generally, I work if the laptop is charged, check emails if my phone is charged, stop everything if Mark needs or wants something, occasionally watch a show on my kindle (my current favorite is the show Numbers).  There is no cleaning to be done, organizing to be finished, food to be cooked, which leads to the other plus of being at the hospital. A marked decrease in responsibilities.

Here, when I want food, I order it, and someone else prepares it. When I am done eating, someone comes and takes my tray away. Our room is cleaned daily by the hospital housekeepers (who are amazing!). The nurses keep track of and administer all of Mark's meds. He is currently on ten different meds here in the hospital. For most of the month, he is getting meds every two hours, around the clock. This was something I was completely unfamiliar with before I had a critically ill child. I had no idea what life was like for families who had a child that struggled with something like this. It's a whole new world, where everything revolves around a med schedule. But when we are in the hospital, the nurses take care of it. Today I napped for almost five hours straight. I did not need to jump up and administer medicine (or find something for a child to do, or diffuse an argument, or tell someone to go back to quiet time - lol). And tonight I will sleep through the night while the nurses dutifully take care of all of Mark's needs. 

Now, this is not to say that I'd want to live at a hospital all of the time. In the morning I am awaken by the realization that if I don't get up and get dressed asap, I'll have to talk to a team of people who are not part of my family while still in my pajamas and without my hair brushed (I once realized at the end of one of these conferences that I had had stray curls sticking straight up from my head the whole time. when I noticed and tried to smoosh them back down, they started laughing). People come to your room at random times during the day for random reasons. And it never fails that if you have been waiting all morning for the doctors to come (after jumping out of bed and getting ready much earlier than you wanted), they will arrive precisely at that moment when you decide you can't wait one more minute to go to the bathroom/leave and get coffee/etc. Not to mention the greatest downside of all - not being with my husband and my other children. Our life is a lot to manage, but I love it, and no matter how many things there are to appreciate about being at the hospital, it will never outway being in my own home surrounded by the people I love the most.

God bless you all, and as always, thanks for reading my ramblings.

Sleep well.

Wendi

 

Best news so far, on an journey yet to be completed

Mark was in on Tuesday for his first MRI checkup since beginning chemo three months ago.  Things have been a little tense while we waited for this.  The uncertainty of how things are looking, compounded with fears of new growth, tumor spread, there are just so many things that can go wrong during the course of treatment even before it is completed.

Today was the big day, going in for labs in advance of Round 4, and to review the findings of the MRI.  Wendi had to deliver Jim to his first day of school, so I brought Mark in this morning, and then Wendi met us shortly afterward.  Mark was entertaining the staff with his best Assassin's Creed impersonation.

Mark has been doing so much better this time around after Round 3.  Round 2 was a wretched time, he was essentially in the hospital as much during that following recovery period as out.  The low point for Round 3 was just nosebleeds and anaphylactic reactions to blood platelets.  The reactions were dicey, to be sure, but still a cakewalk compared to all the complications from Round 2.

He still isn't eating enough, so he continues to get nutrition through his NG tube as much as his nausea will allow.  But he is frequently up, he is chatty, he is witty, and his moments of grumpiness fewer.  He has found the energy to rock out to Lego Rock Band most nights lately, which we are counting towards his at-home physical therapy.

Fingers crossed for, if not good news, at least no bad news, from the MRI.  I don't know how well we could stand a hit to our morale right now.

So, after labs were drawn, the oncologist came into the room and partly closed the door.  I think we looked calm on the outside, but my heart was in my throat.  This is what we got (click it to see a larger version):

In much fewer words: The post-surgical cyst that formed after the big procedure last winter has notably diminished in size.  Nothing else of significance was visible on the scan.

......Nothing else of significance was visible on the scan!

Now, to keep perspective and expectations grounded in reality, this does not mean he is cancer-free.  At a purely technical level it simply means that his tumor is no longer visible to an MRI scan.  It does not mean the cancer is gone, and there are no guarantees that he is or will be cured.

But, for sure, this is the most hopeful we have allowed ourselves to feel for a while.  This is, after the course of treatments Mark has gone through, the best-case scenario to hope for at this point and time.

From the deepest wells of our hearts, our family thanks you all so much for your continued prayers and words of encouragement.  Mark is not out of the woods yet by any stretch, these next three rounds of chemo will be very hard on him, as there is a little less recovery from each one before the next, but for the first time in a long while we have found reason to have some guarded but real hope.  We hope you will continue to hold him up and pray for his spirit, to help him keep up his reMarkable Courage.  God bless.

Hoping for boring

It's been a crazy couple of weeks and I keep not posting because it seems like there is too much to say, but it just becomes more each day.
The short version:
Mark's third round of chemo went remarkably better. We went home as scheduled on July 31st and had no emergencies between then and his follow up the next Tuesday. On Tuesday his platelets were low, so they have him a transfusion, which he had an allergic reaction to, gives and difficulty breathing. The good thing is his oxygen saturation stayed good. They couldn't finish the transfusion and required benadryl and a double dose of steroids to get it under control, but we were able to go home that evening.
Wednesday night at 11pm he got a nose bleed. When it hadn't stopped after 10 min we called oncology. They said to take him to the ER, so off we went. It ended up lasting over an hour, but his platelet count came back "ok" (low, but not awful), so we went home.
Thursday was quiet and Mark had a good day. That evening he began to get really tired and uncomfortable, complaining of headaches. The next morning we had an appointment early, so we just have him some meds and headed to sleep.
Friday morning he woke up very tired. He took his medicines and we jumped in the car, where he began to complain of stomach pain and extreme nausea. I knew the best thing would be to get him to the clinic asap. He began throwing I'll as we pulled out of the driveway, and then his nose began to bleed. When we got to the clinic, He was still bleeding, so I went back and asked if They could see us early (it was only 8:40 am). They figured he would need blood so they immediately put us on the day treatment side of the floor. His labs came back low for everything, which meant he'd need two different transfusions. He was also complaining of pain all along his GI track and he was starting to run a low grade fever that kept creeping higher.
They decided to admit him. Then his port stopped working, so it took about an hour to get that cleared up. Finally got his platelets, pretreated with benadryl, and only a few hives.
Moved upstairs, got red blood pretty late. Overnight his fever climbed to 103 which got us a weekend stay.
Saturday he needed red blood cells, and his stomach and throat still hurt but otherwise he felt better.
Sunday he got platelets again, this time he had a few more hives than Friday even with the benadryl pretreat.

Later in the afternoon he began to get a couple of hives again and was complaining of difficulty breathing, but his oxygen levels looked fine, so they just gave him some more benadryl and he improved. They had no idea why and I think they sort of thought he was overreacting.
Everything was on track to go home this morning. No fevers, all his bacteria cultures came back negative, no more vomiting. The only issue was his platelets were still a bit low and he'd had another bloody nose over night. Instead of having us leave and have to head back of he got another bloody nose at home, they decided to give platelets and then we could head home. He'd had benadryl a couple hours before, so they started the platelets and I got started packing. Everything packed up, I settled down to get some work done before we left. And then Mark coughed. And coughed again. "Mom, what are they giving me right now?" "Platelets" "Well, my throat feels scratchy and my eyes feel like they're swelling."
I looked up. His eyes were swollen so much they had wrinkles underneath them. Red blotches we're starting to spread over his body. I called the nurse and let her know. Nurses swooped down upon us. They gave him benadryl again. He kept getting worse. They gave him steroids. The doctor showed up. He kept getting worse. His oxygen was dropping. Another dose of steroids. The doctor and a nurse were constantly checking his breathing sounds. His oxygen levels kept going down. The nurse kept looking at his vitals then looking at the doctor, over and over, like she was just waiting. Finally she left the room. She came back and said she had an epi pen waiting and had called the respiratory therapy people from the picu. His whole body was covered with swollen red patches. More people came in. Finally the order was given to give him an epi pen.
His oxygen started to go up. Everyone began to relax. Of course, an epi pen means several hours of observation. So, here we are, trying to be uninteresting (his toes did begin to turn blue about half an hour after the shot, but they had us elevate them and they pinked up again). I've ordered lunch. They're planning to have us out of here by 7pm now. We're heading home with two new meds. Out next appointment is Thursday. Here's hoping for a couple of boring days at home :).
Hugs to you all!

Round three - almost halfway!!!

Sorry that it's taken so long to get a new post up. Life got busy at home and then back we came to the hospital for round three! After this we will be halfway through his maintenance chemo treatments!!
Mark hated his ng tube when he got it last week, but he has gotten used to it. They gave him a weighted one so that it is harder to throw up and the tubing is thinner. We spent the next several days working him up slowly from 5 ml per hour of feeds (1 tsp!) to 45 ml by Tuesday morning when we were admitted.  He did great that first night, but we did have to drop his feeds down to 25 ml per hour to help with nausea. Yesterday we dropped it again to 10 ml, which is  where it is sitting now.
This morning I met another mom whose son has brain cancer - choroid plexus carcinoma. He turns three next week. We are Facebook friends now. His name is Henry - please pray for them!
 Mark has been pretty miserable today, but he's not able to tell us what's wrong. Not sure what to do about that. He's been struggling with acid reflux and hiccoughs. They put him on a med for the acid reflux. The hiccoughs are a side effect of one of the new anti-nausea meds they put him on. They're driving him a bit crazy. His potassium has been super low, so they are suplementing that. Nothing so far, though, that should make us have to stay past tomorrow :). Thanks and hugs to you all!

Ng tube

At the hospital in day treatment. Mark will be getting an NG tube under sedation. We have some concerns about the NG tube because he has been vomiting still, but we'll see how it goes. I'll let everyone know later today or tomorrow.  He will also be continuing TPN through Friday, so we'll have both for awhile. Hugs to you all and thanks for all the thoughts and prayers!

Prayers again

We came home Thursday. I thought I had posted, but evidently not. At home we are on close to the same scheduke, except there are no nurses to help. He has been feeling stronger and happier the last two days, but tonight he is feeling very nauseated again. He tried to eat some smoothie today. Yesterday he managed that, plus a couple bites of chicken and rice. Today the smoothie has caused him to feel very yucky. Prayers that he will get better. We are trying to wean him off the anti-nausea meds, because he starts chemo again in just over a week and he was pretty much maxed out on them when we left; I moved him to every three hours last night instead of every two. Not sure it's working. But they want somewhere to be able to go if the chemo makes it worse.

Better News

Mark is feeling much better today. His blood counts began to recover yesterday. No fever since Monday. All his meds are by mouth now and he's not throwing up. Now we are just waiting for home health to be able to come and do the training for the tpn, then we should be able to go. They're going to schedule a time to put in an ng tube under sedation sometime next week.

Got to go. Hugs!

At The End of the Day

I've been blessed by more visitors in the last two days. Yesterday Amity, Catalina (with two of her sweet children), and Christine all came to visit, each bringing me a lovely treat. It made the day fly by and it was lovely to have more adult conversation.
Today all of my family (that live with me) came to visit! Frank stayed with Mark (which they needed) and I got to go with the children out and about (which we all needed). It was so nice to spend time with them. It has lightened the load and brightened my spirit. I am feeling much better.
Mark has been nauseated again today, throwing up this afternoon. He also spiked a fever again this morning. The last blood culture came back negative (meaning the fever was not from a blood infection), but they had to do another one with the new fever. We currently don't have a target day for leaving. Sigh. But right now he is sleeping soundly finally (they wanted him to stop the morphine so we hadn't been doing pain meds today, but Mark finally admitted he needed them and so he is more comfortable again).
 He also had to have another red blood cell transfusion. They're expecting him to need platelets again tomorrow because they are dropping as well (that will be his fourth platelet transfusion this round).
I'm feeling like a broken record. The doctors suggested maybe we should start weaning him off the iv meds again. I said I feel like we are exactly where we were last Monday, except now he feels worse and has a fever. They didn't push it.
One good thing, though, is his WBC was up to .2 this morning. It's been under .1 for a week, so the slight upward trend is encouraging. I think right now they're just hoping he starts to feel better as they climb.

Tangerine Trees and Marmalade Skies

Mark is doing much better today overall. He was awake for a bit this morning, playing solitaire on the tv, watching Winter Soldier, and even having one bite of French toast!

On the downside, he's begin hallucinating, which he hasn't done at length since after his brain surgery. We weren't sure what was causing it then either. There are a number of variables with all of the meds he's on. Last night we had to put the bed alarm because he tried to get out of bed a couple of times while he was disoriented - one of the times he kept "yelling" happy birthday as he struggled to get up.
The Dr got to see it today. I woke Mark up while he was in the room. Mark looked at me and at first didn't really see me, then he focused on me and startled, looking very alarmed. He reached out and touched my face and asked me what was wrong and why I had turned blue. I told him it was ok, I'd turn back to my normal color later and he could just go back to sleep and not worry, which is exactly what he did. Its strange because he's aware of what is going on but he sees other things in addition to share really here and he mixes things up. It's hard to explain. He told Frank yesterday he kept thinking the IV pole was Joseph.

Between that and his headaches they're considering doing an mri this week. We'll continue to keep you updated. If nothing else, it's definitely keeping things interesting. Hugs to you all and happy Sunday! God is good, all the time :).

Tonight

Today started with another episode of vomiting along with a long nose bleed. We changed his meds around again and he got another transfusion of platelets. Then he spiked a fever. They took blood for a culture, but in the mean time he's on a new set of antibiotics via iv for at least 48 hrs. We also asked them midday to start giving him some morphine. He's been able to rest peacefully since then; no more moaning.

Frank came to relieve me tonight. I packed up all of my stuff, briefed him on all the "important"things he needed to know, and made it as far as the door of the room before I completely broke down crying. Other than the 2 nights I was sick after his second surgery I have been with Mark for every appt, hospital stay, etc, and I wasn't ready emotionally to let go of that. I'm not sure about all of the psychological reasons, but I just couldn't do it. My sweet husband held me while I cried, called home to explain the situation (because I couldn't bear to hear disappointment in my other children's voices), and went home to look after everyone.

I feel like it's a control thing - there is really nothing we can control about what is happening to our child, but I can do this one set of things: I can sit by him, argue for him, help him, hold the vomit bag for him. I can wipe his face when he's sick and lean in close to hear his words that are barely a whisper at this point because of the pain in his throat. These are the things I can do for him, and I wasn't ready to let that go tonight.

I Get By With a Little Help...

So many great visitors today. Thank you to Jana, Gen and Chi, and Wes and Rachel (whom I haven't seen in over 15 years!) for taking time out of your busy lives to come visit. It made the day fly by and it was so nice to be able to laugh and relax for a bit. God bless you all.

Mark has been not as nauseated, but much weaker and more fatigued. Not able to do PT or watch a movie. He didn't even attempt to eat anything today. Pretty sure that ship has sailed for now.

Or Not

Mark's vomiting picked up a bit with an episode both last night and this morning, accompanied by almost constant nausea, fatigue, and weakness. That being the case, they've decided to keep us here until Monday in the hopes that once his WBC counts begin to rise he will feel better.

NPCs

"He's right," Mark says.

I am busy typing an email and have to stop to figure out what he is talking about. A song is playing and it takes me a second to place it. "What?" I ask.

As Mark is falling asleep, we are listening to his favorite Pandora channel, based on the Newsboys. The song is "Give me your eyes" by Brandon Heath. (I am putting a link at the bottom so you can listen to the song if you have never heard it.)

"He's right," he repeats. "When we see people on the street or at the store, we treat them like NPC's."

(NPC = Non-Player Character, like the random background people in a video game that are of little importance and generally ignored)

"You're right. What could we do about that?"

"Wave at them. Smile."

So that is Mark's challenge to each of you tonight. I told him I was putting this on the blog and he smiled. He wants you all to go out tomorrow and work hard to not treat others like NPCs. Smile. Wave. Make people wonder what you're up to. Do it for Mark, because you never know what that person is going through. God bless you all! Good night.

Mark's pt appointment yesterday

One day more

We were hoping to go home today, but no such luck. Yesterday was a hard day, with Mark's nausea increasing and a headache in the evening. We'd been moving to having all his meds by mouth, so we could go home. After taking his morning meds today, he became nauseated again, which lasted a couple of hours. I finally suggested he try some toast, just something light so that his stomach had something in it other than just water and medicine (he still hasn't been able to eat). He put one bite in his mouth and began to vomit. So, not a good idea after all.

The team came in a bit after that, hoping he'd be able to go home. He was just exhausted and moaning, and when they asked him if he wanted to go home, he said no, he wanted to feel better first. Back to the hall again. The doctor said (nicely) if he was going to bee miserable here, he might as well be miserable at home, that maybe going home would help. I agreed, but as we talked it seemed that the nausea had come back when we switched him off the IV meds back to oral. I explained that I had no wish to just stay in the hospital indefinitely, but if we could make him comfortable in the hospital by giving him IV meds, I would prefer that to taking him home and letting him be miserable.

We decided to use today to try a new anti nausea med and to put one of the other meds back on IV, then discuss going home again tomorrow.

After that he developed some severe pain in his legs. Once the antinausea med was switched back to IV and he had an Oxy, he began to feel better. We had a nice visit with Gen and Chi who had brought Nick, Bella, and Joe with them. He had a great PT appointment, and then he developed another headache which he rated at a 3 (which is high for him). Now he's resting again, and another Oxy is helping the headache go away. We'll see how he does over night. Maybe we'll head home tomorrow.

Hugs to you all.

And still here...

Mark has been very tired this morning. He received a platelet transfusion yesterday afternoon, but his platelet count is still only 50. They will continue to watch it overnight.

His hemoglobin fell, so he'll have a transfusion for that either tonight or tomorrow morning. Otherwise he's been ok. Yesterday he was up until around 4pm, even making it to the chair to play a couple of hands of cards, then he got tired and slept. His legs started bothering him again around 9 and he was having trouble getting back to sleep. A melatonin did the trick finally, but in the meantime he was pretty miserable.

Right now we're watching Planes. He was playing Wii a little bit ago. His energy level is still low. We're so thankful for the tpn, though, because he still hasn't been able to eat anything.

The man who brings room service just left. He knows Mark and I both by name at this point, as does the housekeeper. He said see you tomorrow as he left. And so he shall.

Still Here

We're still at the hospital today. Mark's c diff seemed to come back with a vengeance yesterday, so the doctors decided to put him on a new antibiotic. In the meantime his platelets fell too low over night, so he is currently getting his first platelet transfusion.

Yesterday he was experiencing a tickling sensation in his bones which was causing him a lot of distress. It was decided that this is probably a sign of spreading neuropathy from the vincristine (one of his chemo drugs) he is getting (it happened last week when he received vincristine as well). They said it is causing his neurons to misfire and confusing the signals. This is also the reason he is hypersensitive to touch and pressure.

Today PT brought him a walker and taught him how to use it. We will be receiving one to take home from the hospital because he is still having significant issues with balance. Even with the walker, someone has to be with him at all times when he's walking because he is "tippy".

Last night I finally took time to look at our pre-cancer family pictures taken by our friends Emma and Will. It was so bittersweet and I had a hard time getting to sleep after. Praying to see him back to his cheery self someday.

Hugs to you all!

We've added a slideshow of pictures of Mark through the years to the side bar of the desktop version of the blog.

Quick update

Mark had a great morning after the food thing was settled, but around lunch he became nauseated again. He battled it all afternoon until finally vomiting a little while ago. Still not eating anything, but they started TPN this afternoon so we know he's getting nutrition. Goodnight everyone!

Our first extra hospital stay

First, I'd like to thank all of you who come here to check up on Mark. In the past I have had a bad habit of posting quick updates to facebook and then popping over here when I had more time. I realize that makes it harder for people who are trying to follow Mark's journey from here. Largely this has been an issue of  my comfort level with the how of quickly posting here. I was finding it overwhelming. However, I have made some changes to our setup today so that this will now be easier. I have also decided to leave facebook for awhile for various reasons, therefor this will now be my main vehicle for communicating about how things are going here. I have added an option to subscribe to the feed through blogger services, so that you can have updates delivered directly to your device. There is also an option to sign up for email updates. That all being said, it also means I will not see your comments on facebook. This will be our official record, so please post and comment here. Mark will try to get on his facebook once we're home, and we will read the comments there to him as he feels up to it.

So now for the update. This will be the last time I copy from facebook (at least for awhile). If you've already read the facebook posts, please scroll down to the dotted line for today's update.
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July 3, 2:13pm

More good news /bad news.

Good news is that my awesome son-in-law, Eugene, passed his driver's test today to get his Class A CDL. He only started school about a month ago, and has pretty much been doing full-time work/full-time school ever since. We are so, so proud of him!!!!!

Bad news is Mark spent the night vomiting more than he was taking in, so we're back in the hospital, admitted at least overnight, maybe longer. He's miserable. He hasn't eaten since Monday, and he's lost three pounds so far since then. He is in pain (headache, throat, eyes, and stomach) and very weak.

July 4, 12:31 pm

I am sending this from the hospital room. We found out this morning that Mark may be getting a feeding tube today. He still hasn't eaten since Monday. He completely lost it - he feels as though this means he's failed in some way. He just kept saying, "I'm really trying" over and over again. I explained all the reasons it was a good idea, and how it's not his fault and he hasn't done anything wrong. He finally asked me to just put on Pandora with Christian music (when he's resting he usually listens to Irish Folk music). This song came on, and I had to share it.
This is an important song that really touched my heart. Our pain is real, and that's ok. God has got this. He's big enough to handle our cries. This is for all my friends and family walking hard roads right now.

Need You Now by Plumb
https://m.youtube.com/?#/watch?v=9ylnx0NA9X4

July 4, 8:40pm

It's been a hard night. Just a short update because I have to hold it together for Mark. Can I just say, having to hold your child down during three attempts to insert a feeding tube through his nose while he screams, kicks, claws and begs you to stop it (and then it never does work so we get to do it all over again in the morning), and then having to wake him an hour later so you can give him a shot that he hates and dreads but that he won't let anyone else give him - this is not my idea of a good night. I'm going to binge watch Grey's Anatomy now for a bit. Happy fourth to you all.

July 5, 9:06 am

Guess who just finished a half piece of French toast?!

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That was yesterday morning, and the last update on facebook. 

Because of the french toast it was agreed that we would wait out the day and see if his appetite might be returning. I suggested putting in a g-tube (a tube that goes directly into the stomach through the abdomen instead of through his nose and throat). The on-call doctor said she would want to see this happen again next cycle before she went that route.

After the french toast he fell back asleep. At lunch he tried to eat some chicken noodle soup, but he couldn't tolerate the noodles. We poured the broth in a cup. Nope. We asked if there was anything, anything at all that sounded good. Maybe clam chowder, he thought. But for right then, he just wanted to sleep. 

My sister came later in the day, and brought his favorite clam chowder. Early in the evening he woke up enough to try it. He took one sip. It doesn't taste the same, he said, tears in his eyes. He shook his head, laid back down, and fell back to sleep.

Later in the evening he awoke so I could give him his nightly shot. No appetite. Slight nausea. Complete despair.

Two hours of crying and distress ensued, during which I put on music, attempted to encourage and reason with him, held him, read him Bible stories, and finally resorted to silly cat videos. The silly cat videos did the trick, calming him down enough to fall back to sleep.

This morning our normal care team came to visit us. Obviously, yesterday had not panned out the way anyone had hoped, so something needed to be done. Today. They began to tell Mark that he needed to stop thinking about whether he liked the food or not and he needed to think of it as medicine, something he just had to do. I could see the tears welling up in his eyes. This had to stop. Now.

"Can we please continue this conversation in the hall." 

In the hall I explained to them that Mark was not being willful; he just could not eat anything right now. Pushing him was only going to make him feel worse and increase his already overly intense guilt complex (no idea where he inherited that from-lol). Everyone was using the same words, but they were defining them differently (thanks CC for Challenge I debate). When Mark said the food wasn't making him nauseated, he simply meant he different feel like he was going to immediately vomit after eating it. It did not mean that he was simply being picky. The food was making his stomach "uncomfortable", "achy", "not feel right". They were including all of those things in their definition of nausea, but he was not. They were not trying to make him feel bad, but he's a people-pleaser and he doesn't want to disappoint anyone ((another trait of completely unknown origin...no one else in our family is like that...ahem). The more they pushed, the more he would feel like he had failed and the worse his depression would get. I also told them there was no way he was going to allow them to place an ng tube, so that was not an option that could be tried again (i.e. don't even think about it). 

Unfortunately, since yesterday his WBC has dropped sharply, so he is neutropenic again. Our Dr. was fine doing a g-tube, but it can't be done now because of the drop. Sigh. Sounds like it will be done before we enter round 3. In the meantime, they are putting him on TPN (nutrition through his port directly into his blood stream) and an anti-depressant, which together mean another 3-5 days here in the hospital. 

Now that he knows the food thing isn't going to be pushed anymore, he is in a much better mood. He's laughing, quoting movies, and even met with art therapy briefly this morning ("They wanted me to evaluate him to see if he was depressed," she told me later. "I don't need to do art with him to tell that. It's obvious." She just shook her head).

So that is where we stand. Here in the hospital for a while longer. Thank you if you managed to make it all the way through this post. They will usually be shorter and more frequent now that I know how to post from my phone :). 

God bless you all.

God is good. All the time.

And Mark says, "Thanks for the support." Those were his exact words.

Hugs,

Wendi

P.S. If posting, please sign your first and last name so we can keep everyone straight :).

Round 2 so far

I have been posting to Facebook, but forgetting to post here. I am at the hospital alone this time, because we felt our other children really needed one of us home. Here are the updates so far:

June 29th, 9:55 am

Got to the hospital, and they couldn't find us on their list. Come to find out, our chemo visits were moved to start on Tuesdays. Since we're here, they're trying to make it work. Whoops.

June 29th 12:25 pm

Settling into our room. Lunch is ordered, things unpacked, Despicable Me 2 on the TV. So far, so good.

June 29th 2:46pm

I had been thinking about getting some watercolor pencils for Mark, just because they're cool, but it hadn't occurred to me what a gift they would be to my perfectionistic artist son who hasn't wanted to draw much since his treatment started. The art therapist had some he could use while we're here in her cart. They are beautiful and so forgiving, and he is on his second picture already. "These are so cool," he just said, smiling. And he talked to us some about how he's feeling while he was coloring. Such a blessing! Now to get some to use at home :).

June 29th 7:01 pm

You know your life has changed when you are scrolling through your news feed and see the term "My daughter's in heaven..." and your heart stops and your first thought is, "I didn't realize she was sick. I wonder how she died." My friend was speaking metaphorically, but evidently my mind doesn't work that way anymore. Cara Omanson Combs, I'm glad she was actually excited and happy :). Scared me.

June 29 10:10 pm

I know many of you are praying for Mark. He's having a really rough time this go around: nausea, vomiting, and uncontrollable diarrhea. Continued prayers are appreciated. Cancer sucks, btw.

June29 11:47pm

The power of your prayers is being felt. He is resting peacefully now, finally getting some decent sleep. Thank you everyone!

June 30th 9:30AM

The vomiting stopped last night and the nausea has abated some, but the diarrhea is still a problem, so they're testing for intestinal bacteria. Until that comes back he's on a contact alert so the staff has to gown up  to come in now. He also fell this morning while brushing his teeth, cutting two toes on his iv pole and banging his leg up a bit. And although it's better now, for about half an hour this morning he had a really hard time finishing sentences. He would say three words and then his mouth would stop working right and he would just mumble. He'd start again, get three words out, and the same thing would happen. Then he'd forget what he was trying to say. Very frustrating. But right now he's working on a crossword with the OT.

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Right now, he is sleeping. He has been talking a lot, but he's been out for a little over three hours now, which is good since he was awake at 6am this morning. His eyelids are becoming puffy from the fluid they must pump into him before and after his chemo treatments due to their toxicity, and he hasn't eaten anything since yesterday afternoon. He colored a bit for the OT this afternoon, but got frustrated with the crossword puzzle. He slept through the time allotted to see his PT. He has to have someone stand in the bathroom with him while he's going, because we don't want him to fall again.

Last night, at one point, he got angry and began telling about how much he just wished the cancer would go away. Today, when the doctor asked him if he had a,y questions, he responded with "Yah. Why am I here?" She began to explain it was so he could receive chemo, etc, but he cut her off with a shake of his head. That wasn't really what he was asking. 

--Wendi

Enough

Half an hour ago Mark's last dose of chemo for this week was started. The deceptively inocuous-looking fluid, clear like the liquid that delivers needed hydration to his small body, drips into the tubing that guides it into his chest. He had been doing well all day - sleepy, but still managing to work through most of his therapy exercises this morning and to eat a hearty breakfast. As the chemo was being set up, one of the nurses shared the joys of the local cancer kids summer camp. I explained we had decided that we'd skip this year, since Mark has been pretty tired (it's in a couple weeks). No problem, the nurse replied, next year. The kids can go for three years. Suddenly Mark's eyes began to fill with tears. We asked if it had to do with the camp discussion and he said no, he wasn't sure what was triggering the breakdown, but I had to wonder.

What was he thinking? Where had his mind gone?

Had it followed mine, thinking first about how I wish he was able to do all the things they were telling us about - archery, rock wall climbing, horseback riding. He is almost scared to leave the house most days, and as we've been in the hospital his walking has deteriorated. Then wondering about making plans for next year. Will we get there? I have faith and am hopeful, but it's hard to keep the thoughts away.

Or was he simply overwhelmed by how tired he is, how hard it is to do basic things - get dressed, walk around the unit, squeeze putty.

Maybe he was reflecting on how we're almost done and soon we'll be heading home. True he loves home, but it's also hard to be there, having to share us with everyone, having to deal with excitable energetic siblings.

Or perhaps he was just worried about the chemo. We've gotten through the first two days with relatively few side effects. Was he worried he might not make it through tonight so easily?

I don't know. He wouldn't tell me. I'm not sure he knew.

So we held him and wiped his tears and told him it is alright to not be strong sometimes and that we are proud of him no matter what and it's fine to cry. And eventually he calmed down.
Now we're watching Captain America. He's starting to enter his "happy time" of the day. I can tell by the amount of commentary coming from his bed. It will continue to increase until it's hard to hear the movie through it. And then he will suddenly get tired again and fall asleep.

A new rhythm, a new normal.

And maybe that is what the tears were for.

It's enough.