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!