Tuesday, June 30, 2015

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.

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. 


Wednesday, June 3, 2015


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.

Tuesday, June 2, 2015


There are so many little triggers here that recall strong emotions from our two previous stays here, when we knew so little and our family's lives had abruptly changed forever.

The soft tones from medical monitors. When an alert sounds on Mark's, or from another room, and wakes you up because you're sleeping so light, and you remember what it was like to wake up before, having forgotten why you were here, and it all came crashing back.

The vaguely British female voice in the elevator. "Going down", "first floor", that reminds you of when you sometimes allowed yourself 15 seconds to break down a little when you were alone.

The view out the south side of the building, where you see passing traffic on I-5, and remember how you watched them before and wondered which ones had people living through their own major trials and which ones carried people blissfully unaware.

We are on the 4th floor right now, one underneath the PICU on the 5th. Already had the opportunity to share the elevator with parents of kids up there, with their tear-stained faces telling a familiar tale of fear and upheaval.

For us it is getting easier, and you may have seen me say before, it is our new normal. Yes your world stops for three or four days, but then it starts to go again, because it has to. It's like climbing into a tub of cold water. Very difficult, very unpleasant, and very hard to function at anything else when all you are doing is freaking out about the cold water reaching your belly button. But once you're in and accustomed to it, you can carry on a conversation again. Usually.

Mark is watching Despicable Me 2, just finished a light breakfast of pancakes, and is fighting off the expected nausea that is starting to materialize. Huddled under his favorite red blanket, we are still getting occasional commentary on the film, but he is fading out fast into a nap.

Thanks for your prayers, thanks for reading, and don't forget to consider all the trials people all around you every day are going through. Afford people the benefit of the doubt, assume a positive intention, and be kind.

Monday, June 1, 2015

Round 1, Day 1 draws to a close

This was Wendi's post to Facebook at about 6pm.
Just started today's chemo (Cisplatin) about an hour ago. We've spent the rest of the day doing labs, vitals, PT/OT, napping, and IV fluids. This chemo is a six hour push, so he'll be done with it around 11. They say it usually doesn't cause nausea/vomiting for 72 hours, but they've added two new anti-nausea meds just in case. Right now he's feeling good. Dinner is done (thanks Genny and Chi for the McDonalds), we're watching the Lego movie, and Mark is providing constant commentary. We'll post more as things develop.

Room 412

We are settling in, just assigned to room 412. Our day RN is Lyndsee, and she is very nice.
Blood work came back all good, which was expected, so chemo will commence later today.
Mark is familiarizing himself with the hospital's new in-room TV entertainment UI, has goldfish crackers in hand, and opted to watch Brave while we wait for the next thing.
Thanks for reading.

Maintenance chemo begins

We are back at RCH this morning for the first day of Mark's first round of maintenance chemotherapy. He will be admitted to the hospital later today and will be staying until at least Thursday. This is so he can be monitored closely for how he reacts, to control his blood counts, fluids, nausea.
The treatment plan calls for six rounds of this, once a month. Depending on how well his body tolerates the chemo, his stays may be shorter or longer with each treatment.  If there are no delays, that puts his last round out to starting November 1. Some kids make it through no problem, but more typically there are delays with blood counts or illnesses, and sometimes the chemo is so hard that the full number of rounds is too hard on the body and they just don't finish them all. We know this is an all-Summer and all-Fall thing, and are hoping to be done by Christmas and Mark's 12th birthday.
Anyway, now that the treatment break is over, we will likely be posting more often again to keep you all up to speed on developments. Your prayers for Mark's health and well-being over the next few days are appreciated.