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 :).