New Normal

I don't know where to begin but I know that I have to post today so that I can squeak in at least 1 post for the month of May. At the moment we are back in the hospital for Keith's first chemo "cocktail". We all have mixed emotions about being back on the oncology floor but at least we're only here for 30 hours. And yes, we are counting. We're also grateful that we aren't in the Intensive Care Unit which we bypass every time we use the elevator.
When we first came into his assigned room today, Keith refused to go near the bed. Too many bad memories, I guess. So we spent the first hour in the chair reading stories. It didn't take him long to fall asleep and he finally preferred the bed to the chair. We just got his feeding tube put back in since he vomited it up yesterday. So, once his feed is started, they can administer the first chemo drug. After that settles, they can run the next two IV chemo drugs. One only takes a few seconds, the other is run over 6 hours and then he receives hydration for 24 hours after that. So, technically the 30 hour countdown hasn't started even though we've been here for 7 hours already. Awesome.
At least Dad is here now and he came bearing gifts. So Keith is happily watching Kung Fu Panda with his new sword and shield.

As far as what we've been doing the last 6 weeks and how Keith is doing, I'll try to sum up as best as I can. It might take a few posts. But now that I'm hanging out in the hospital, I've got time. Lots of time.

First, Keith. Considering everything, he is doing great. His energy levels have shot up since about 2 weeks post-radiation. He has a lot less nausea, even though he is still sick, occasionally. He is happier and is back "chasing" all of us around the house. He really is almost running. And he looks less and less like a bent over old man every day. He can get up and down the stairs at-will and loves playing outside as long as it's warm enough. He has put on a little more weight. We'd like to see more, but he has gained a couple of pounds which is huge for him. Keith has begun to ask for food but has limited his contact to "tasting" and "licking" anything other than milkshakes, soup or ketchup. He's having a small amount of trouble swallowing solid food due to his brain surgeries but over time he should make a full recovery from that. For now, the feeding tube is a permanent fixture of his face. I have a love-hate relationship with it. I love knowing that he's getting adequate nutrition and that he is at the very least maintaining his weight. I hate how the tape is always pulling on his face, how the tube is always in his way when he is playing, moving and sleeping. It really is obnoxious for him and I hate it for that. But even with a noxious tube strapped on his face and a shunt-bump on his sweet bald head, he's still the most adorable little guy I've ever seen.

Cole continues to fulfill the role of "older" brother by making sure Ally and Keith have everything they need. He will often tell me what "Keith" or "Ally" want which of course has nothing to do with his own desires. He is simply helping his siblings watch a certain movie or play with a certain forbidden item. He also astounds me with his logic. For example, this weekend I told him that he needed to get dressed because cousin Caden was coming to play. He responded, "I'm just a Superhero, Mom. And so I don't need to get dressed." Makes perfect sense, doesn't it? He also sets certain "codes" for himself. Like how Batman always wears socks but Buzz never wears socks. So if he's wearing his Batman shirt he must wear socks but if he's wearing his Buzz jammies he absolutely cannot wear socks. He authoritatively explains that if he eats his grilled cheese he will turn into a werewolf or if he drinks his chocolate milk he will turn into a vampire.
The kid kills me!
I must also add that the ONLY shirt he will wear right now is his Batman shirt with the yellow sleeves. No other shirt is acceptable. So if you wonder why it looks like he's always wearing the same shirt, it's because he IS always wearing the same shirt. I choose my battles carefully. You can't expect me to defeat Batman every day, right?

Ally's infatuation with food, stickers, wearing boy's underwear and throwing back a Coke now and then continue to endear her to our hearts. Aunt Syd has nicknamed her "Homeless" because her hair and attire often question the existence of a mother.

For now, that's the update. I've got lots to cover but also lots of time tomorrow when we're letting the IV run. Thanks to everyone who's checked in on us lately. I know when I start getting emails from long-lost friends wondering if everything is okay, that I better start updating the blog. Another hint is when I start receiving threats from my family.

We are well. Really. For a few weeks while Keith was off-treatment, we almost felt normal. It's definitely a new kind of normal but normal nonetheless.

The Good Stuff

The general consensus at our house is that this week was Keith's best week yet. We started out strong with some serious playtime at "Debbie's Clubhouse"...at least that's what we call Debbie's ingenious creation in her basement.
Keith was on his feet swashbuckling, boxing and cooking up some grub.

Cole took time out of his busy cat-terrorizing schedule to box and re-decorate.

Ally did what she does best...snack.

We squeezed in a trip to the park. Keith was slightly frustrated at what he couldn't enjoy, but Brent took him on a hunt for Big Foot which greatly improved his mood, even if his search came up empty-handed.

Maybe next time.



Grandma Smart brought all kinds of fun Easter activities to enjoy. Cole and Ally were fully entertained with egg-decorating, Easter playdough, new stickers and sidewalk chalk. Keith dug in when he was up to it.

 Ally learned to multi-task: snacking AND sticker-adorning. I know. Her talents are endless.

Keith and Cole did a little bit of wrestling.

 Ally and Keith created their own game where they would hug each other, fall down and then Ally would help pick Keith off the floor. It was hilarious...and really sweet.

 



(I know what you're thinking and yes, occasionally I comb my daughter's hair.)



Keith's immune system was down again by the end of the week so he had to have shots the last 3 nights, but he took them like a man and he didn't even cry. Today he asked me if I had to get poked too and if so, did I want a Lightening McQueen band-aid or a Spiderman band-aid? Of course I had to let him poke me and I picked Lightening McQueen. I'm happy to report that my son doesn't hate me as I had feared, even though I've officially become the shot-giver in our household.

A good week was topped off with great news. Drum roll please...

Snick had their baby yesterday: Evelyn Kate Jordan. Keith, Cole and Ally have a new cousin! Of course, she is beautiful and we can't wait to meet her!

 

Overall, a good week full of good things. One of the best things being that Keith only has 5 days left of radiation to go. Phew!

The Unexpected

There are no prison breaks to report this week. Unfortunately, the only field trips Keith had this week included a 4 hour stay in Day Treatment and a night in the Emergency Room.

Keith and I weren't at his oncology appointment for more than five minutes on Wednesday before we learned it was going to be a very long day. They had drawn labs during his radiation sedation and the results were poor. Keith's red blood cells, white blood cells and his ANC (Absolute Neutrophil Count) had dipped below the safe-zones. (Good thing we got out last week while we could, right?)
This meant two things. One: he needed an immediate blood transfusion to boost his red blood cell count. Two: he needed a daily GCSF shot to aid his bone marrow in producing more white blood cells, specifically ANC.
The blood transfusion and the first shot would be done following our oncology appointment. The transfusion would take a few hours but at least it wouldn't hurt. Keith had been up since 3 AM that morning, complaining because "my pillow is too hot". (Supposedly radiation can feel like a sunburn.) So, he was very tired. Fortunately, we were able to curl up on a couch together and sleep through most of the transfusion. For what seems like a big deal to me is treated pretty casually in the cancer-treatment world. We were in a large family-room style set-up with patients scattered about the room. One patient was puking her guts out behind us while a rambunctious patient and her family ate their lunch in front of us; all while receiving some sort of treatment.
I know. Seriously. Sometimes I think I'm dreaming my way through this whole thing. Ordinarily, I would have been disturbed by the vomiting grade-schooler, but before the nurse could finish apologizing for it, I quickly interrupted her and explained that I completely understood. Just a few weeks ago, that was us: Keith was the one vomiting all over the oncology play-room--several times. I was cleaning vomit out of the sofa crevices and out of the rug and off our clothes. Fortunately, someone had donated a brand-new pair of pajamas in Keith's size so at least he didn't have to wear his insides for the rest of the appointment.
So as bad as the lounge sounds, nothing can shock me anymore. I swear one thing I've learned from all of this is that I will NEVER judge anyone ever again. You just never know what someone might be suffering under that unkempt hair, greasy face and grimy clothes. Lately, that someone is me or a member of my family.
So, anyway...the transfusion. All went well and after a good nap and some Scooby Doo, we were home-free. At least we were as soon as Keith had his GCSF shot. Fortunately, Keith only had to endure one shot while awake because they did the others while he was sedated for radiation on Thursday and Friday. I was dreading the weekend where I would be administering the shots myself at home. Not because I mind giving shots. I administered shots at an allergy clinic to help pay my way through college and I gave myself shots in the stomach when undergoing infertility treatment. Trust me. Shots don't bother me. What bothered me was being the bad guy for Keith. Again. I already give him all his meds and run his feeding tube and take him everywhere he doesn't want to go. I really did not want to add "shot administrator" to my stellar resume. Needless to say, when the clinic called Friday afternoon and reported that his ANC had rallied from the 300s to the 2000s (1500 and above is normal), I was ecstatic! No shots over the weekend. They'll continue to draw blood a couple of times a week and he will need shots here and there throughout his treatment but at least we're safe for the moment. And if there's one good thing about radiation, it's that we can do lots of things under sedation--like shots. So, we'll take advantage of the next 2 weeks.

We planned to lay low Thursday to allow Keith to recover from a long day on Wednesday and from several poor nights of sleep. (Brent and I are getting in lots of late night Scooby Doo with the K-man.) I'm pretty sure someone spiked his blood or maybe Keith is part-vampire because he was almost bouncing off the walls Thursday. The oncologist said to expect an energy increase post-transfusion, but I was pretty surprised that afternoon when Keith showed up in the entryway while he was supposed to be taking a nap. I was mostly shocked because this meant he had crawled out of bed, pulled out his feeding tube, ripped the cement-like tape off his face and slid down a flight of stairs in order to do so. I couldn't even be upset about him taking out the tube because I was so proud of him for all his hard work!

He had to get the feeding tube replaced the next morning during radiation sedation. (I told you sedation comes in handy.) But Keith struggled with the new tube all day on Friday. It was vomit on top of vomit so I was almost relieved when the tube came up with the vomit by dinner time. Rather than thread a very long, noxious tube all the way back up through his throat and nose (imagine a tube going in the nose and out his mouth at this point) I simply cut it short and then pulled a much shorter tube out his nose. The only problem then was that we needed a new tube and it was the weekend and there would be no radiation or oncology clinic open in the morning to put in a new one. (They've promised to train me but again, I'm not exactly jumping up and down at the thought of adding "tube threader" to my growing list of talents.) My only option after speaking with our oncologist was to head to the E.R.

Keith and I had a killer Friday night watching movies and waiting and waiting and waiting in the E.R. Fortunately, we did get a private waiting room since our oncologist called ahead and didn't want to expose Keith to who-knows-what floating around the Emergency Department. We were also lucky to have Grandma Smart and Darel hang out with us before their very long drive home.
It wasn't pleasant and Keith was not at all happy about getting the tube put back in. "No! No tube!" was his mantra. (Did I mention that I hate pinning him down?)
We eventually made it home by 11:15 and called it a night. I hope we can avoid that field trip in the near-future. The good news is two-fold. One: Keith is tolerating the new tube. Two: Keith was exhausted enough to sleep through the night.
Seven. Hours. Of. Uninterrupted. Sleep.
Enough said.

Uncle Bryce's visit was a huge hit for the weekend. The kids couldn't get enough of reading stories and watching movies on his phone!

Breaking the Rules

Due to radiation and now chemo, Keith's blood counts continue to be very low; meaning his immune system is unable to fight off infection easily, which means he should be at home and I should be limiting his exposure to people. Especially people who manifest the big 3: cough, runny nose or fever. I've been drilled (in a friendly way). I know the rules when his blood counts are low.
But when Keith came home from radiation on Tuesday, upset (as usual) he asked for something specific: a trip to the Children's Museum. Hmmm...That is definitely not a place he should go. It's crawling with kids and their cooties. There is no way for me to tell if anyone at the museum has the forbidden symptoms and honestly, some kids probably do.
On the flip side, Keith is sad every day.  I would shave off my eyebrows if he told me it would make him smile. Normally, this is one of our favorite outings and we used to go often. I was pleasantly surprised that he was even asking to do something that reminded him of his healthier days.
So, I thought about it for all of a nano-second, decided that his mental health was just as important as his physical well-being and we were out the door.

Keith was the happiest that I've seen him in 2 months. And on top of that he did more physical therapy in 2 hours than he's done in the past 2 weeks! He all but refused to hold hands and was bending, climbing and playing like I haven't seen him do on his own in a long time. Most importantly, he was smiling. (At least until it was time to go home.)

The next day at his oncology appointment, the nurse practitioner went over his dropping blood counts and I felt really guilty. Not guilty enough to confess. Not guilty enough to ask permission for the future. Not even guilty enough to refuse him less than 24 hours later when he begged to go again. I slathered on the hand-sanitizer every 10 minutes and prevented the kids from doing a few of the more germ-infested activities. (ie: the water station) But yes, technically, I broke the rules. More than once. I'll probably do it again. Don't judge me.


To continue the rule-breaking theme for the week and also to acknowledge the half-way point of Keith's radiation treatment, we took a trip to the Aquarium.

It was a really fun trip with G&G Burnett, Uncle Clint, Aunt Julie and Cousin Caden. The drive home taught us that we should keep most outings a little closer to home but it was still fun to get out as a family.

Ally commemorated the mid-way point of Keith's radiation by going topless and by plastering herself with 67 stickers. Don't judge her (or her mother).

Overall, we are doing fine. Keith has brought new meaning to the word trooper. He still has moments of stomach upset, but for the most part we have the nausea contained. (Thanks to a second anti-nausea medication and more on-the-job nurse training.) He has also completed spine radiation and has moved on to focused brain radiation so we are hoping that helps to counter the nausea as well. Mostly, he's fatigued. We have to respect his window of alertness and make the most of it.

Radiation countdown: 3 weeks down. 3 weeks to go.