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.

Man Crush

For those of you unfamiliar with the term "man crush," let me explain. A man crush is when a perfectly straight man (the Crushee) develops such admiration, respect and esteem for another man (the Crush) that it borders on enfatuation. This new and exciting feeling may result from a number of admirable qualities of the Crush - athletic skills, professional achievement, personal charisma, or just plain awesomeness.

Like a teenage girl, unable to contain himself, the Crushee feels compelled to extol the virtues of the Crush to all he knows. The Crushee is often oblivious to his feelings, and only those that hang around him can identify that he is, indeed, suffering from a man crush. They know because, regardless of the topic of conversation, the Crushee finds a way to bring up the Crush and reiterate, over and over, why he finds him so compelling. Phrases that are indicative of a man crush include, "he's the man," "I love that guy," and "that guy is awesome," repeated over and over.

For example, my Dad had a man crush on Tiger Woods (pre sex scandal). My brother has a man crush on Mitt Romney. All men have a man crush on Chuck Norris.

I've always considered myself impervious to the man crush, namely because I'm the ultimate skeptic. No man is as good as he seems. Think Tiger Woods and Brett Favre. These fallen heroes were once the objects of many a man crush...lots of good men fell for them, but not me. Tim Tebow will be next.

Enter Dr. Michael Dorsen. He's the man!...and I'm smitten.

Dr. Dorsen is the lead neurosurgeon who's been operating on Keith's brain over the last couple of weeks, and let me just say...that guy is awesome. He's Australian and he definitely reinforces some of the Australian stereotypes. He's direct and to the point. He doesn't beat around the bush with bad news or good. He tells it like it is, without sugar coating and without a lot of emotion. While these are admirable qualities in and of themselves, they pale in comparison to his real talent - he has mad surgical skills.

Dr. Dorsen and his team have taken great care of Keith over the last couple of weeks and have managed to completely remove a tumor that Dr. Dorsen once characterized as "huge, ugly, malignant, and invasive." I know, he's a real charmer, but you gotta appreciate his candidness.

Dr. Dorsen was assisted by Dr. Wheby, a pediatric neurosurgeon here at Emanuel. I have a serious crush on Dr. Wheby as well. Not only is she a wicked-good brain surgeon, she's warm, affectionate, and talks with a southern drawl that soothes even the most troubled soul. The contrast between these two is evidenced in their post-surgical visits to Keith. When Dr. Wheby checks him out, she comes in, sits on his bed, rubs his back, gently lifts his head to look at the incisions and talks warmly to him and us about how good he looks. When Dr. Dorsen comes in, he bypasses Darcee and I, lifts Keith head, says "looks good," and then turns to leave. Put these two together and you have a serious Dream Team.

Those of you who know me, know that, with the exception of my wife and kids, I'm not the most affectionate guy. I'm a hand shaker, not a hugger. I don't know why, but I just don't like touching people and I don't like people touching me. Darc has asked me to accompany her on a couples massage some time, but that's never going to happen. She says it will be "relaxing." The thought of lying naked under a towel while some stranger puts their hands on me doesn't sound relaxing at all, in fact, it makes me queasy. Despite my phobia, I've had to physically restrain myself from hugging Dr. Dorsen over the last two days. Given the news that Dr. Dorsen has shared with us following the surgery and the MRI, my desire to embrace has been palpable, as evidenced by a recent conversation with Darc:

Darc: "Easy tiger."
Me: "What do you mean."
Darc: "I think this is the only time I've ever seen you want to hug a man more than he wants to hug you."
Me: "Is it that obvious?"
Darc: "Yeah...but I respect your restraint."

I've settled for handshakes on both occasions. To be fair, he's probably the one guy who's less affectionate than me. I've had to wrestle even a handshake out of him. But that's okay, I respect that.

What do you say to a guy who's saved your sons life? "Thank you?" That hardly seems sufficient. I mean, I say "thank you" to someone for putting a little extra meat on my burrito or for complimenting my recent self-done haircut. "Thank you" seems like a drastic understatement in this case. Regardless, the best I could do was to shake his hand and say "thank you."

Now that the surgery part of Keith's treatment is over, we won't be seeing much of Dr. Dorsen anymore. Keith will now be under the primary care of oncologists. Though I'm sure I'll meet many other impressive physicians throughout this journey, Dr. Dorsen will always hold a special place in my heart. He's the man and I love that guy. So, consider yourself warned, though we may be talking about football, dirt bikes, or something completely unrelated, I may find a way to bring up Dr. Dorsen and his awesomeness.

In all seriousness, we know, without a doubt, that the outcomes of Keith's surgeries are directly attributable to the blessing of a loving Father in Heaven. He has intervened on Keith's behalf to effectuate results that were simply unachievable when the doctors first looked at this tumor just 2 weeks ago. We know this is the case, and we are forever indebted to Him for the miracle that He has worked with Keith. He has answered our prayers and the prayers of so many family members and friends. Keith still has a long road ahead of him but we are so grateful for men and women like Dr. Dorsen and Dr. Wheby, whose dedication to their profession of healing allows the Lord to use their talents as a means to bring about His miracles.

Pleasant Surprises

It's been a long, good day. I'm tired, so this will be quick. Keith is doing excellent. Surgery went very well. The neurosurgeon believes he got all of the tumor except for some remnants near the cranial nerves next to the brain stem. (Obviously he didn't want to touch those. That would affect Keith's ability to swallow and affect function and feature in his facial nerves.)
The neurosurgeon is pretty confident that with radiation and chemo those residual tumor cells can be "mopped up" quite well. We certainly hope so. We'll know after the MRI tomorrow exactly where we stand, but he called it a "gross tumor resection" which are the exact words we needed to hear for the best outcome for Keith.
The pediatric anesthesiologist was impressed at the resilience of Keith and his ability to come out of anesthesia so quickly. He called him "an amazing kid" especially considering how small he is for a 3 year old.
Keith is doing so much better after this surgery than the last resection surgery. It probably has to do with the fact that he didn't need a blood transfusion this time and that the tumor was not so deep. It was also nice that he didn't have to remain sedated for a day and a half. They were able to wake him right away. He was talking to us within 30 minutes of surgery and begging for popcicles immediately. (At one point, he tore the stick out of my hand and shoved it into his mouth--showing extraordinary strength and coordination post-surgery. I was cracking up. Only happy tears today.)
He even looks great. The swelling is minimal and he is able to move and speak remarkably well. I can't express how grateful we feel for that.
His scar is unforgettable. It is exactly in the shape of a number "7" on the back of his head. I'll try to remember to take a picture tomorrow. I suppose he'll never need to wear a sports jersey, as long as his coaches allow him to be number 7 for the rest of his life.

Anyway, we are deeply humbled by the support of so many and by Heavenly Father's answer to our prayers. Considering the news that kept getting worse and worse the first few days of this month, we are truly amazed and grateful for where we stand today. We know our prayers have been heard and answered. We appreciate the physicians, nurses and other medical staff who have used their talents to bless the lives of others. We are humbled by the bravery and resilience of a special little boy and are grateful for more time we get to spend with him. Keith isn't finished teaching us yet and we still have a lot more to learn.

Waiting...again

Brent's side of our bathroom vanity is plastered with inspirational quotes. The quote wall is something I often openly mock but secretly love. The contributors run the gamut from Gordon B. Hinckley to Jack Black. Somewhere along Brent's spectrum of brilliant minds sits Winston Churchill. One quote from him caught my eye before bed last night and has been burning in my mind ever since.

"I am an optimist. It does not seem too much use being anything else."

This is my motto for today. What good does it do any of us to be anything but optimistic?

I might have wavered a bit after meeting with the pediatric anesthesiologist who went over the dangers of brain surgery and ran down a laundry list of possible outcomes including stroke, nerve damage, etc. He did call us "veterans" at this whole brain surgery thing. I'm not quite sure yet how I feel about that comment, so we'll just leave it at that.
I also might have started shaking when the neurosurgeon reminded us that "this is a big deal". "We're going to be aggressive." "This is his one shot." (Gesturing to Keith). Basically, if we don't resect a very good portion of this tumor, therapy is not going to do much good.

Brent and I told ourselves that as medical professionals the physicians are obligated to explain all the risks. And despite those risks we still feel very optimistic. Remember it doesn't do any good to be anything else.

I also feel gratitude today. While we were in the pre-surgery area, there was a young mother and a beautiful baby boy headed for a second heart surgery. The mother had a laptop in her son's crib where her husband was available via Skype since he is currently serving in Iraq. Our hearts went out to her. She did have a friend and her pastor with her but that is not nearly the same as having a spouse's hand to hold or having a spouse give reassurance like only he or she can. Sometimes we think we have it the worst but in reality, we never do. Brent and I reminded each other of that and were even more grateful for each other. I said a silent prayer for that baby, his family and his medical team.

Currently, we are waiting out another surgery. This one is not as technical as the last one but every bit as important. In order for Keith's treatment plan to remain in the "Standard risk" category as opposed to the "Moderate or High risk" category, we need to remove close to all of this tumor. The pathology results show that this is not a classic medulloblastoma but shows signs of a slightly more aggressive type of medulloblastoma. Since at 3 years and 3 months, he barely exceeds the radiation age minimum of 3 years old, we would obviously like to keep his young brain at the lowest radiation rate as possible. If the surgeons can remove enough, Keith won't have to receive those stronger amounts of radiation and chemotherapy used for cases in the "moderate to high risk" category but can remain in the "Standard risk" category.

So, we are waiting. But we are hopeful and faithful and optimistic. Thank you again to countless people out there who are praying and fasting for us and simply keeping us in your thoughts. We've received many words of encouragement from many people and in many forms. Thank you. Please know how much it means to us.

Love At Home

The Spike and the Shunt

It almost sounds like the title of a fable. (Emphasis on "almost".)

First, the spike.
Well, we didn't get Keith home today, after all. He spiked a fever this morning and it's now just hanging around in the low-grade range so we'll be here until at least tomorrow. Obviously, we are bummed but we'll get him home before surgery at some point, so that will be good. He's been pretty ornery today but I think it's a good sign. At least he's feeling well enough to show annoyance at being here. The feeding tube hasn't helped his mood, either, but I think he's slowly getting used to it. We've been up reading lots of stories and doing lots of activities today. (I can't tell who's having more fun with the new toys, Keith or his dad.) Anyway, we've made the most of a bummer deal. Our hopes are high for tomorrow.



Second, the shunt.
Keith had another surgery last weekend while I was taking a hiatus from blogging. I thought I should record it before I forget. It's not likely that I would, but here goes.

Technically this was his third surgery of the week since his first was the emergency surgery on February 1 to place the EVD tube and allow the extra Cerebrospinal fluid (CSF) in his brain to drain outside his body. After the tumor resection surgery, the neurosurgeon determined that the CSF in Keith's brain was still not absorbing properly into his spine and therefore scheduled shunt surgery for the following Monday morning. This surgery would insert a shunt into Keith's head with an internal tube that runs down his neck and into his stomach. The excess CSF from Keith's brain would then either be absorbed or urinated out.


So, anyway, when Keith was extremely uncomfortable and very swollen late Sunday night, the ICU Pediatrician decided to call our neurosurgeon at home and get Keith into surgery right away. By this time, Brent had affectionately named him the "Lemonhead baby". While some swelling was expected post-tumor resection surgery, he was swollen enough to raise the concern that his CSF was draining into his facial tissue. After surgery, the neurosurgeon said this was not the case and Keith could have waited until his originally scheduled surgery time the next morning, but at least it helped make Keith more comfortable. There was a minor complication in surgery where Keith's bowel was "nicked" with the tube. (They make a small incision in his stomach to attach it.) They had to call in a general surgeon to patch it up with a few stitches, but it barely grazed the outside of his bowel and shouldn't cause any trouble. So, if you see a large incision on top of Keith's head, that's from the shunt in his head. Luckily he has nice hair that should cover it up once it grows in after chemo. He'll still be as handsome as ever; especially when he is out of the hospital and smiling.

Super Keith

It's been a busy day for our Superhero. He's seen more therapists and specialists than I've seen in a lifetime.

First, he had to have an audiogram that they can use as a baseline before he starts chemotherapy. Apparently, hearing loss is one of the first side-effects of treatment. Keith was not super happy about it but they got mostly what they needed. They will get the rest after his next surgery. Everyone makes a real effort to make things fun, but Keith has their number. He knows they are really after performance on his part and sometimes he just doesn't want to play. I don't blame him one bit.

We also spent quite a bit of time with the occupational therapist, the physical therapist and the speech pathologist. The O.T. and P.T. were blown away by Keith's progress from yesterday. I was fighting back tears while cheering him on during therapy yesterday as I watched him struggle to do simple tasks. The frustration on his face said it all. On our way back to his room, I quietly asked the O.T. how long it usually takes kids to walk again after a surgery like Keith's and she wouldn't give me a straight answer. Finally, I said, "like a month?" All she replied was, "Or longer." Wow. Well, at least I got an answer out of her.

But after today, I'm confident we can get him walking before that, assuming the next surgery goes well. He was standing a little on his own and took a few steps with some help. He was also standing at a play-table and holding his weight with one arm while playing with the other. I was spotting him, but that was it. He wanted to keep playing but his head was hurting and we had to get him back for some more Tylenol.

I was so proud of him. I feel much more encouraged today about how things will go after surgery next week. At least I have a better idea of what to expect. The O.T. said today that if he does this well next week, he won't even need in-patient rehab which would be fantastic. Then we could get him home sooner.

The one drawback to his progress is his nutrition. Anyone who knows Keith knows that he doesn't have much of an appetite. (He didn't inherit that from us!) We've been working with the nutritionist the past few days but his caloric intake is about 1/3 what it needs to be. He'd have to eat a lot more cheetos and popcicles to reach 1100 calories! So, the nurse is going to put a feeding tube in him tonight. He will have it until he goes in for surgery again. Basically it's a tube that goes through his nose and into his stomach. During the night we'll hook him up to a machine that will feed him formula. They tape the tube on his cheek to keep it out of his way. Keith is no stranger to a feeding tube. He had one for a few weeks in the NICU, too. Even at 3 pounds he was pulling that tube out of his nose so we'll see how this goes. We'll continue to encourage him to eat real food during the day. Supposedly, it's fairly common for oncology patients his age to have a feeding tube.

We do have some excellent news to share. The oncologist has decided to send Keith home tomorrow! Even though it is only for a few days, we are very excited. We feel Keith will perk up if he is able to be at home with Cole and Ally. He will especially appreciate a break from all the poking and touching from complete strangers. Our biggest concern is how we are going to get him back to the hospital for surgery next Wednesday. I can't think of a bribe big enough! He hates this place. Today he kept hiding behind his pillows whenever anyone walked through his door. Now that his strength is starting to come back, we could have a pretty big fight on our hands next week. I'm okay with that though. I love to see him show his personality again and see him have the strength, energy and coordination to fight.

So, we're looking forward to some family time at home before his next big surgery. (A polite translation: no visitors please.) Keith needs to regain some strength and we are desperate for some family time together at home.

We are more than grateful for the cards, letters, balloons, activities and posters that have been sent for Keith that are currently decorating his hospital room. We can't wait to redecorate them on his walls at home! (even if it's just for a few days). It's my turn at home tonight and my head is spinning with ideas to welcome Keith home. Yay for good days.