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.

Bald for One. Bald for All.

When a chunk of Keith’s hair came out in my hand Monday afternoon, I knew it was time. The radiation oncology nurse had been “reminding” me every day that it really would be better to shave his head before it got too patchy. Monday was the day. Ready or not.

Brent insisted that if Keith’s head is going to be bald, then Cole’s head is going to be bald and Dad’s head is going to be bald, so we had a Family Night to remember.

Keith and Cole both hate regular haircuts, so we knew this would be a challenge. But Brent had the idea to allow Keith and Cole to wield the clippers on his head first and it did seem to help make it more fun. The one drawback to Brent's idea is that he looked pretty creepy until we could fix the boys’ handiwork.

Keith still was a little unsure until Brent took him into the bathroom so he could see himself and his dad in the mirror. When he saw that they looked the same and that he could rub Dad’s “fuzzy head”, his smile grew wide.

Now, none of us can resist the urge to rub all the “fuzzy heads” in our house so we might be keeping this style around for awhile.

Plus, I have to admit that I find the shaved head pretty sexy on my husband. Bruce Willis has nothing on him. Take a seat Vin Diesel. Jason Statham...Who?
(Okay. It might also have to do with the fact that I find it irresistible that he would shave his hair off to make Keith feel better about losing his.) But he does look good. There's no way around that.

And also, just for the record, these are the cutest 3-year-old bald heads I've ever seen.
And I'm not even biased.

Radiation Routine

We think Keith is getting used to the routine which goes a little something like this...
12 A.M. Administer anti-nausea medication.
1 A.M. Shut off feeding tube. Very slowly flush the tube.
6 A.M. Administer anti-nausea medication.
6:05 A.M. Start and warm car and load DVD with his pre-chosen Chip and Dale episode.
6:15 A.M. Grab Keith from bed and strap him in his carseat. He's much happier now that we have a show waiting for him to watch. It is conveniently the exact length of time it takes to get to the hospital.
6:45 A.M. Enter Radiation Oncology Unit. Read a story or watch cartoons on my phone.
6:50 A.M. Anesthesia nurse takes Keith's vitals while he resists by usually telling her to go away or asking me to get him out of there. I tell every nurse not to take it personally. Nobody wearing scrubs has a chance of winning his affection.
7:00 A.M. Anesthesia is administered through Keith's port while Brent or I hold him in our arms until he falls asleep.
7:05 A.M. We leave the room and wait.
7:40 A.M. We go to the recovery area while Keith comes out of anesthesia. Without fail, every day, the first thing he says as he's groggily waking up is, "I can't be brave. I can't be brave." Of course, the last thing we are always telling him when he goes to sleep is how brave he is, so it's pretty cute that he's continuing the conversation when he wakes up. What he doesn't know is that it's too late. He is already brave. He just doesn't know it yet.
8:00 A.M. Once Keith is fully awake and I dress him, we go back in the car and are home by 8:30.

The rest of the day is a balancing act between running formula through his feeding tube fast enough to achieve our calorie goal, but slow enough to avoid vomiting. Between the nausea from spine-radiation and from feeding tube issues, we often feel as if we're walking on egg-shells to keep him from losing critical calories. As of last Monday, Keith weighed in under 20 pounds. Scary. But despite vomiting every day last week and a few diarrhea episodes, he was still able to gain back 2 pounds by Friday. So that was a huge win. We hope as we get better at countering the nausea, he can continue to gain weight. I have a goal this week to get at least one vomit-free day for him. His mood seems pretty directly tied to throwing-up, which is still pretty traumatic for him. You wouldn't think so since he's been doing more than a fair share of it since 2011 began, but still, he's only 3 years old.
Cole is so sweet when Keith is throwing-up. He continues to repeat, "It's okay, Keif. It's okay, Keif," in the sweetest voice. And he often begs to rub Keith's back when Keith is asleep. "I'm just going to rub Keif's back for a wittle bit, Mom."

Cole has also started reading Keith stories before bed. He has matured a lot through all of this. He is incredibly thoughtful and often asks Keith if the feeding tube is bugging him. When Keith answers in the affirmative, Cole asks if we can take it out for Keith. He is his brother's keeper, for sure.
I often worry about Cole and how this affects him too, but he continues to surprise me in his handling of change. Kids really are more resilient than we would expect sometimes. His one quirk has been to start fake-sneezing whenever we ask him to do something he doesn't want to do.  He'll start sneezing uncontrollably and claim that he's too sick to go to bed or too sick to clean up his toys. If that's the worst side-effect that comes out of this for him, I'll take it. Gladly.
So, anyway, once home from radiation, the day is fairly normal, with the exception of running Keith's feeds, cleaning the bags and giving medication here and there. It does have its crazy moments, like when I'm holding the puke bowl for Keith while Cole is dancing around the bathroom half-naked, calling for help with getting his underwear on the right way and Ally is screeching at the top of her lungs in front of the fridge for food. She has developed quite a high-pitched squeal that drives us all nuts. She knows it and she's not afraid to use it to get what she wants.

Fortunately, the crazy moments are few, especiallly since I've had so much help in the form of grandma's, sisters, sisters-in-law and our Bishop's wife, Debbie. Everyone needs a Debbie, especially in moments of crisis.

Overall, we are glad week one is over. It started out rough, but definitely got better by the end. Keith's mood has improved as we have honed our nausea-combat skills. We loved seeing him smile more this weekend and doing lots more walking and playing.

One week down. Five more to go.

Slice of Normal

I am a delinquent blogger for two reasons. First, I haven't had any time whatsoever. I thought I was busy with the basic care of 3 kids 3 and under. Well, now I really know what it means to barely keep my head above water. While technically, Keith has been home for almost two weeks, we have still spent a significant time at the hospital. After tomorrow, we will have spent the last 4 out of 5 days at the hospital, with no visit lasting less than 3 hours. I'm beginning to feel like the oncology clinic is the black-hole of time. There is no such thing as a quick visit.
The second reason for my delinquency is that we are doing our best to enjoy some semblance of normalcy at home. I don't dare take any time when the kids are awake to do anything but enjoy being together. (In the interest of full disclosure, I might have slipped out for a quick run when possible.)

We've been doing our best to have Keith pursue the same activities he enjoyed before surgery, with the two huge exceptions of being able to chase and wrestle Cole. We can't wait for that to resume. But until then, Keith can color, paint, build, work with playdough and stickers, and even get out of the house a bit. (Thank you! Thank you to all those who have sent activities and/or care packages. Formal notes of appreciation are coming soon!)
He walked on his very own the first time we took him to a toy store with large toys on display. Apparently, a little motivation goes a long way! We couldn't believe how he could get from one area of toys to the other when he wanted to get there. The best weapons are helping him forget that it's difficult and helping him focus on something he wants. At home, Keith sometimes lacks confidence to get to the bathroom or to the table but you get him doing something fun and it's amazing what he can do.
Just yesterday, he heard Grandma Smart come to the front door and he appeared in the entry way all by himself, when just moments before, he had been sitting on the couch 3 rooms away! That was huge. I was beyond excited to see him take that kind of initiative at home.

Keith had another surgery this week to insert his port-a-cath which works like an internal IV. This allows the clinic to draw blood and administer chemo without having to put in an IV every time he goes in. It's a port right under the skin in his chest that has a catheter inserted into a vein close to his heart. Thirty minutes before each chemo treatment, I will put numbing cream over the port and by the time we get to the appointment, they will be able to put a needle through the skin and directly into the port to access his vein. It's pretty amazing what they can do.
Surgery went well. Keith was up and playing the next morning without any complaints. In the picture below, he's riding a car in the surgery waiting area, blissfully unaware of the pending surgery and even worse to him, the blood draw...I hope he will forget or at least forgive me for every time I've had to help pin him down while the nurses prick, poke, rip, tear, push, pull and tug at him. In my next life, I'm going to be a Dad, where I get to show up bearing gifts after the torture. 
(In all fairness, Brent has been there for plenty of torture, but being the most available parent, I do bear the majority of it.)

Keith insists on wearing his hospital band. He calls it his watch. He also cleaned out the surgery floor of their Spiderman band-aids. The kid has them EVERYWHERE.

Today, Brent and I met with the oncologist to officially decide on Keith's treatment plan. Like many cancer-patients (or legal guardians of a cancer-patient in this case), we were faced with a decision to choose the standard treatment or opt for a clinical study. I don't really feel like going into all the details here because it has been emotional for me and frankly, the decision is behind us now. Either way, there are long-term side-effects of radiation to the brain and spine. The most difficult for me to swallow is that Keith's neuro-cognitive development will take a hit. The younger the patient, the bigger the deficit and being only 3 years old and considering the area of the brain they will be radiating, his neuro-cognitive abilities will suffer. To what degree, we can estimate, but we don't know. Still we hope and pray for the best. Keith hasn't stopped beating the odds yet.
In the end, after looking at some applicable studies and engaging in extensive discussion and kneeling in fervent prayer, we chose standard treatment. We feel good about it. We're going forward and we're not looking back.

Tomorrow Keith goes in for his CT Simulation which allows the physicists to make his mask for radiation therapy. Next week he'll have another MRI. That will be the last task before the physicists make final plans for his particular radiation set-up. Keith starts his treatment on March 14. It will be Monday through Friday for 6 weeks. Because it is crucial that he hold still for several minutes at a time during those treatments, he will need to be sedated. This means fasting 6 hours prior to the appointments and an hour of recovery time after each appointment. So, with travel time, it will be a few hour ordeal every morning for a few weeks. But we would be headed to the hospital at least once a week for chemo anyway, so why not go every day, right?
In all honesty, we feel fortunate to live so close to such great care. I've talked to many parents who travel decent distances for treatments or simply displace their family for those 6 weeks or however long treatment lasts. That would be a whole other challenge that we are fortunate enough to not face.
So, anyway, this is a ridiculously long post. But I wanted to update Keith's fans. I've received a few hints from people that they like hearing how their favorite Super hero is beating all the "bad guys" out there. In this case, I suppose there's only one bad guy. But if I were him (or it), I'd watch out. Keith is on the move.