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.