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.