Saturday, January 31, 2015


Late last night Mark had a brief good bounce and started cracking one liners and endearing himself further to Liz, the night RN, had her in stitches. I hoped we had turned the corner, but this morning he was very low again.

Nachos, breakfast of champions.
Grandma showed up, but he barely felt up to giving so much as a weak thumbs up to anything. He wasn't drinking enough, so his IV was hooked back up, further dragging on his mood. And since he was hardly eating, the topic of an eventual feeding tube came up. He did ask for nacho cheese lunchables for the umpteenth time, though, so grandma left on a mission.

The day RN, Bonnie, surmised that Mark was trying to access his stoic reserves (which are pretty depleted), and might be trying to pigeonhole his pain. We slipped an unannounced dose of morphine in, and he conked out soon after.

Visit from Debi and Tasha. Sorry, missed picture
opportunities with Darlene, and with the Myers,
who watched Mark so I could run a couple of errands.
When he woke up, there were his nachos, and he tore into it, ate the whole thing. Then a steady stream of visitors started appearing. Mark's highlight was when his MD and Bonnie conspired to creatively circumvent the rules regarding child visitors. You see, non-siblings under 18 are not permitted past the lobby, let alone allowed on any floors above.

Visit from Paul, and Groot.
Jake Rose brought his son Paul, one of Mark's best friends, into the lobby. Bonnie's other patient was reassigned, and Bonnie bundled Mark into a wheelchair and attached his associated tethers, accompanied us to the lobby, and remained on-hand to supervise her PICU patient the entire time. Mark made funny faces with his uncooperative eyes, Paul gave Mark a singing potted Groot, and the boys (and dads) had a delightful visit.

Since the morphine-assisted bounce, along with orchestrating visits and travel out of his room, Mark's mood has been 500% improved again, he is eating and drinking (and had that IV disconnected accordingly), and we will be making sure we stay ahead of his determined attempts to deny his pain this time.

Bonnie our day RN, and Liz our night RN. They have both
been amazing and serving far above and beyond!
Several gifts and cards were delivered today from many friends, thank you so much! At this point, though, I have to request no more deliveries of goodies. We have so much stuff here now we'll never get through it during our stay, and we'll need two trips with wagons to get everything to the car! This is an awesome and heartwarming problem to have.

Mark was recently morphined up again, and will wake to more nachos. It will be a good night.

God bless, thank you so so very much for your prayers and words of support. I read every comment to Mark, so he knows he is loved, and that means so much to us.


  1. Thank you for the updates! With each update, I smile and cry. Continuing to cover your family and precious Mark with prayers!

    By Pamela Crockford — Feb 1, 2015 6:23pm

  2. Wow! How great that Mark was able to see Paul! And that others have come by to lift his and your spirits!

    I'm hoping to come through on Thursday late afternoon. I'll look to drop JJ somewhere else if you'd like me to sit with Mark to give you a chance to run an errand. (Unless you think Mark was able and wanting to have another visitor, then I'd bring him along.) I also can bring or take back family members as your house is on my way... just let me know what would help.

    By Leann — Jan 31, 2015 11:12pm

  3. Oh, Mark! I hope you feel better each day. I hope you can feel the loving care you are surrounded by. And I hope you are soon well, and able to concentrate on the normal kid stuff, and not the so-serious grown up stuff. Hugs, bud.

    By Peggy & Steve Coquet — Jan 31, 2015 10:55pm

  4. Brave kid. So glad you guys were able to pinpoint what was causing him to feel down. How awful to be in that much pain. In case there are issues with morphine I found that Turadol (sp?) works wonderfully as well. (I have a major sensitivity to Morphine so couldn't have it in the IV during recovery from my C-Sections). Turadol was very expensive about 10 years ago but they might be making a generic version now.

    By Liz Phelan — Jan 31, 2015 10:44pm

  5. So happy to hear you are feeling better and I am super jelly of your singing Groot, honestly that is the best get well present in the entire world! You have so many people who love you and support you whole heartedly and I can only hope that it makes you feel special and a little better even though you are having a tough time, you are so strong my young friend, so bright and wise, you will pull yourself back up again I just know it <3 PS- we are keeping your nacho lunchables under lock and key so don't worry about those, take care sweetie <3 me and Liam

    By Tristina Yarzombek — Jan 31, 2015 10:09pm

  6. So happy to hear he got to visit friends Nachos?????? good thing I wasn't there, we would have had to fight over them!! LOL. Sending a big hug to a very strong young man. He will outsmart this tumor. He has prayers coming from all over, our friends on Agape (world wide) have him and the family in their prayers. I keep them updated. You are very much loved Mr. Mark!

    By Cooki — Jan 31, 2015 10:08pm

  7. I'm glad he got to see his friend and that he got a groot. I've never seen or heard of one before. Hey, Mark, what's his favorite breakfast? Groot loops! I love you and hope u feel even better and happier tomorrow! I'm glad you got some nachos! Yum! Hugs! ♡♡♡ God bless you. I will come see you after your dad let's me know it's OK to come visit you!

    By nancy — Jan 31, 2015 9:58pm

  8. Nachos sound wonderful! I think I'll make some. Thank you for the idea, Mark. I love you.

    By Grandma — Jan 31, 2015 9:52pm

  9. Mark, we are a CC family in New Carlisle, OH. My daughter (Lily, 6 y/o) & I pray for you every day. You are so brave! Please feel God's loving arms around you and your family! Keep up the good fight <3 With much love and many blessings coming your way from Ohio (Go Bucks ;), The Summers family

    By Kelly Summers — last edited Jan 31, 2015 9:41pm

  10. Keep it up Mark, make sure to stay ahead of the pain & most of all try and laugh at least once an hour!

    By Gene White Jr. — Jan 31, 2015 9:33pm