Credit

I went running this morning for the first time in 8 days. It was great to feel a hint of normalcy. I felt weak running but I feel really good now. It helped clear my head a bit and after re-reading my post from last night, I realize that I should not blog at night when I am tired. The post made it sound like I'm a single parent in this whole ordeal and I most definitely am not. Brent is back working and still spending every other night at the hospital. Fortunately, his job is such that he is able to work remotely right now. That is a huge blessing. I keep trying to talk Brent into letting me take all the night shifts during the week and he can have the weekends but of course he won't. I couldn't even get him out of Keith's room for the first 4 days in the hospital.
Anyway, we are both here all day every day and one of us heads home around dinner to spend time with Cole and Ally before bed. We are so grateful to our parents for all their hard work to keep things running at home. I haven't worried about cooking, cleaning, shopping or laundry since I've been at the hospital.
Brent's dad and brother have just about finished our master bathroom remodel that was abruptly interrupted last week. Thankfully, our toilet is out of our closet and back in working order. The walls have been rolled with fresh paint where I had only completed all the edge work last Monday. We now have new faucet fixtures and soon a new light. It looks much better installed than sitting on our garage floor. (Brent's tile job on the floor and in the shower is impressive. I'll post pictures once we are home.)
My dad performed his own miracle in our yard. I'm embarrassed to admit that I still had scarecrows and a hay bale in our walkway. (One friend kindly joked that I was ahead of schedule for Fall 2011.) My dad transformed our walkway with a bench, with some new planted pots and with a few small trees while clearing out an entire truckbed of debris from around our yard.

Basically, our house looks way better than before all this happened, thanks to our dedicated families. They claim it is therapy for them but I can handle being a mercy-case for now.

Torn

I have purposely avoided blogging the past few days because I refuse to be depressing. Who wants to read a blog that leaves you feeling down?
Basically, my expectations for post-brain surgery were completely unrealistic and naive. It's going to be awhile before I get my Keith back. The surgeons had to remove part of the brain matter to get to the tumor, which throws off his coordination and balance temporarily. (We knew this would be the case.) Thankfully, his brain will learn to compensate, eventually. Isn't the human body amazing?

I've decided that the absolute worst experience in the world is watching your child suffer pain. When his distress has been at it's worst, the only way I've been able to cope is to imagine what physical torment I would rather endure than watch his current torture. I've come up with some pretty harrowing scenarios, including sawing off my appendages with a plastic knife and allowing a rat pack to gnaw off my face. I hope you are laughing because that is seriously the sickening way in which I am dealing. I would rather suffer any amount of physical pain myself than powerlessly watch him wince and have him wonder why I'm not doing anything to help. He doesn't understand that the pain is temporary or that it is for his good eventually. I just hope and pray that my presence alone is giving him some source of comfort.
OK. I know. I promised I wouldn't be depressing, so I'm going to share some good news. Keith sat upright with me in his bed so we could read stories. Physical therapists showed us some exercises to work with him on each day so he can regain some strength and coordination and I felt so grateful to sit with him and do something he really loves doing. He was the most animated he's been since before surgery. It was great!
He also started protesting again when anyone wearing scrubs or a badge walks through the door. I love to see a little fight back in him!
We took him for a little wagon ride around the floor today with Cole and Ally. Ally is a little out of sorts so it ended rather abruptly, but it was good to get Keith out of his room for awhile. Cole is struggling. He just keeps repeating, "I don't feel very good." And if you ask him what hurts he says, "My feelings." Poor kid. He has temporarily lost his best buddy. We all have. But we'll get him back.
There are going to be good days and rough days. That's just the nature of this whole experience. I really am trying to be optimistic even though I think I just depressed myself putting some of this into words. Trust me, I spared you the worst stuff. I learned my lesson last time.
I guess I'm just trying to be real. I don't want everyone out there to think I'm tough as nails and I'm just keeping it all together perfectly, because I'm not. I have a huge support system and the strength of the Spirit and that's the only way I'm making it. It's Keith that I ache for. I would do anything to help him better understand his situation and anything to relieve his pain.
Another piece that weighs on me today is knowing that we are going to start all over again next week. Keith's second tumor removal surgery is scheduled for next Wednesday morning. We will relive this recovery process again very soon. I know it is a blessing that we have another shot at removing the tumor. I keep reminding myself of that and it helps keep each of these days in perspective.
For now, it's off to bed with Cole. Brent and I swap every other night: one night at the hospital helping Keith and the next night snuggling in our bed with Cole.
One night at a time.

Miracles

The MRI results from yesterday's surgery show that the surgeons extracted more of the tumor than they thought. The goal was 90%. We were told that anything less than 90% leaves us with "dismal" results. It looks as if the surgeons were able to remove close to that golden 90%--right where we need to be in order for radiation to be successful. It could be more than that but we are at least close.

The other good news is that the remaining tumor has shifted away from the brain stem. When going over the first MRI scan, our neurosurgeon with over 40 years experience said that he had "never seen a brain stem so distorted" by a tumor that is "as big as it gets". It now looks like the remaining tumor has moved into the empty space created from yesterday's surgery. Another miracle.

This news explains the feelings of peace Brent and I felt yesterday afternoon and evening, even when we heard that only 50% was removed. We just kept saying to each other how surprised we were at how good we felt. Now we know why.

This news changes our plans for the near future. We should know the exact plan tomorrow, but we believe the plan will be to operate again within a week. Now that the tumor is in a safer spot, it should be easier and faster to remove. After this next surgery, we would evaluate how much is left, and decide on a treatment plan from there.
One unknown right now is the part of the original tumor that had surrounded the major artery supplying blood to the brain. That was deemed "untouchable by surgery". We don't know if that has shifted at all but we assume and are hopeful that it would respond well to radiation.
We should know more tomorrow.

For now, we are in awe at the the power of prayer and the hand of God in our lives. We feel like the whole world is praying for us. We feel that strength and cannot tell you how grateful we are for it. We know Heavenly Father loves us and is mindful of our needs and wants.

Clearly, we still have a long stretch ahead of us but this is a HUGE step in the right direction on that long road. We have witnessed a miracle. There may be people out there who will call it coincidence or luck, but knowing how the odds were absolutely stacked against us going in to surgery yesterday and knowing how the surgeons honestly felt surgery went afterward, I know we have witnessed a miracle. A miracle that can only happen through faith in the Lord Jesus Christ and in the supreme power of humble prayer.

"We'll live to fight another day"

These are the first words that registered from the neurosurgeon late this afternoon. They got as much of the tumor as possible before they had to stop because of the amount of blood loss. The surgeons believe they were able to remove about half of the tumor. We were hoping for more but right now we are just so grateful that Keith is stable and that the surgeons are confident they didn't hurt him. (With the tumor threatening and even encasing some vital functions, this part of the surgery caused me the most anxiety.)
We'll hit it hard with radiation and chemo and go in for another surgery on hopefully a much smaller tumor. If it's the type of tumor they believe it is, a medulloblastoma, it responds very well to radiation. They definitely didn't get enough of the tumor out for radiation and chemo to do the job completely. Therefore, surgery will be needed again. That's the plan that will unfold in the next few weeks and months.
Right now Keith is still sedated and will be until another MRI is done in the morning. This will allow us to get a look at the remaining tumor.
I am anxious for him to wake up tomorrow and hear his sweet voice and see those beautiful eyes. I hope for now he can feel me sleeping close to him tonight.
He's lightly sedated so the nurses don't want voice or touch to cause him to fight the anesthesia. But I'm here. Brent has been in the room every night while I've been down the hall. Tonight is my turn.
I'm tired but that's a good sign. It means I've relaxed after this first of many hurdles. The magnitude of this journey has really hit me today. This is the marathon of all marathons. We have a very long road ahead but I still feel optimistic and hopeful. I'm even surprised at how good I feel tonight. Thanks again to you all.
I was at home for a couple hours this evening to shower and see Cole and Ally and there were cards and flowers and food. We are in good hands. Thank you.

Waiting

This morning started off very well. We learned that another specialist will be on hand for Keith's surgery, a well-known pediatric neurosurgeon. We also learned that his spinal fluid is clear: a good sign that nothing has spread down the spine. We've all felt good today: strong and optimistic.

I sat down to post a couple hours ago in hopes that it would help me like it did yesterday. I also wanted to help pass the time as we await this 6 hour surgery. As I attempted to give the play by play of yesterday leading up until the moment, I found myself in a very bad place--reliving things that do not need to be revisited. My deeply devoted and in-tune husband literally saved me. He pulled me away from the computer and helped me back to a better place. I've spent the last 2 hours waging an internal war of emotions that I literally never imagined possible. Only through the strength of a higher power have I been able to climb out of somewhere I never want to return. Fear does not come from diety. Faith does. Faith precedes the miracle. I keep repeating this to myself over and over again. I know miracles happen. If ever I need a miracle it is right now.
My father blessed me last night with "the courage of lions and the strength of many". In order for me to have that strength, there must be "many" with whom to share this burden. For every comment I see, every text I read and every email I receive, I know that there is one more individual or family taking a portion of this burden for yourselves and relieving a weight that would crush me to pieces were I holding it on my own. Please know how much your thoughts and prayers mean to us at this time. I read them over and over again to remind me of all the prayers going up to heaven on our behalf.
It gives me so much hope. I am hopeful. I am faithful. I think I just need to write this, to say it so that I can remind myself of my true feelings. If I can post this and re-read it and draw from the strength of so many of you out there, I know that good things can happen--even a miracle.
For now we are waiting. Thank you for waiting and hoping and praying with us.

A nurse just walked in and told us everything is going well. The tumor is still being extracted and Keith is stable. More good news.

Keith: Small but mighty

The nurse who handed Keith to Brent after he was born called him "small but mighty". At 3 lbs 2 oz he was small and he's proving now like he proved then that he is as mighty as they come. He fought for life in the womb and he won and we know he can do it again.
For anyone who does not know, Keith was diagnosed with a brain tumor yesterday. The neurosurgeon has not done a complete MRI reading, but his initial words to us yesterday were that this tumor is "enormous", "ugly", "definitely malignant" and "invasive" (meaning it's in the brain stem). We'll know more details this afternoon and certainly much more once we receive the pathology reports from the actual tumor. Surgery is scheduled for tomorrow morning. We know the neurosurgeon will remove as much of the tumor as he can without disturbing the portion in the brain stem. We do not know how small or large of a portion that is yet. Beyond that, we aren't speculating much about the future. We are taking this one day at a time.

Keith is doing well. We are watching Beauty and the Beast in the Pediatric ICU. He will be here until the excess fluid in his brain is drained. (There has been spinal fluid build-up due to the tumor blocking his brain's ability to re-absorb the fluid.) Fortunately, the major pressure is off and we're just waiting for the fluid to drain. The medical team is unsure how long that will take, likely anywhere from 1 to 10 days.
Keith is in good spirits today. He keeps asking to go home and obviously at 3 years old, he does not understand why he is here. But he's anxiously awaiting a visit from Cole and Ally this morning which will be great for all of them.

Life is full of surprises, mostly good and some not so good. To think that Tuesday morning my main focus was training for the Boston Marathon and a few hours later, I was intensely focused on a much different, much harder and much more important kind of endurance test. Fortunately, Brent and I have a very strong relationship. We continue to love and support each other. We have family support that is second to nobody else I know. We have friends who love us. And most importantly, we feel the love and support of a Savior who has suffered all and knows how to best succor us at this time. In the strength of the Lord we can do all things. If anyone can overcome this it is us. It is Keith.
Thank you all for your prayers and support. We can do this.

The Snowboy, the King and the Pointer

Being the tenderhearted person that he is, Keith feels that all the "snow people" should have a song about them. Therefore, he has been singing the "Once There Was a Snowman" song about every snow character out there...Snow baby, Snow boy, Snow girl...pretty much everyone except Snowman. I think it's his way of showing his political correctness.

I also caught him singing a "We Wish You a Merry Christmas" solo in the tub Saturday night. He affectionately calls it the "tree song". Don't ask. I have no answer. Anyway, his version went like this:

We Wish You a Merry Christmas
We Wish You a Merry Christmas
We won't go 'til we get some
Now bring me some Piggy pudding
Now bring me some Piggy pudding
We wish you a Merry Christmas

I'm pretty sure those are the original lyrics. What's a figgy anyway?




(You may notice a theme in these pictures. We've been spending a LOT of time at the Children's Museum. Keith is heartbroken every time we leave.)

Over dinner tonight Brent attempted to convince his sons of their rank order in our home.
Brent: I'm the boss in this house, boys.

Cole: No, I'm the boss, Dad.

Brent: No, Cole. I'm the boss of you. I'm the boss of Keith and I'm the boss of Ally. Mom is the boss of me."

Cole: I'm the King, Dad.





Brent (recovering): I'm the Boss-King.
Cole: I want to be the Boss-King.
Brent: I'm the Boss-King and you and Keith are pawns.




When Brent named Cole and Keith "pawns", it did not go well. And then of course when he told them Ally was a princess it was all over. Cole just had to have that coveted Princess title. Father and Son compromised and Cole and Keith ended the evening as Princes. I'm pretty sure Cole still thinks he's King or Boss-King or whatever you want to call the man in charge.

Ally doesn't say many words but she makes up for it in sheer yell-volume. She also does a LOT of pointing and says "Hi" to EVERYONE. No matter where we are, she continues to say "Hi" until the person with whom she is speaking, says "Hi" in return. I think she desperately wants to be a part of every conversation and that is the only way she knows how. I don't really have an explanation for the pointing but her noise-level is easy to explain. If you want to be heard at our house you have to yell. And it has to be loud. It didn't take long for her to figure that out.