Saturday, February 28, 2009

Ben Unplugged

Today it was really great to spend the day with "Ben Unplugged".
We rode the giraffe, got pulled around in the wagon, drew pictures, ate lunch together, and played in the soft blocks. He did some business while we were at the play room. After we walked to the room and changed him he was super tired riding back in the wagon. Just as we entered the playroom again he sacked out. We headed back to the room and let him take a nap.
We got a little behind on the pain meds because of the nap and it was not pretty for a while. We will definitely be more diligent on keeping right up on the meds.

We met with the neurosurgeon for a few minutes and he said Ben is doing super. I hate to read too much into comments but his parting remark was "he looks like he is way ahead of schedule". This was as Ben was walking off down the hall to do his own rounds.

He has really been happy Ben for most of the day. He hates it when a nurse comes in wearing blue gloves because he knows some testing, poking or other is coming. For now it is just a waiting game.
Our favorite sayings so far:
- "Stupid Cancer"
- "Brain Bumps Suck"
- "It's only a brain tumor . . ."
I think we want to make at least one of these into a T-shirt . . .:)

Moving Day

We got to move out of the PICU today. Another step in the right direction. It looks like things are progressing well. As soon as he got untethered from monitors he was ready to run around. He has gone for walks inside and out, came to lunch with Cari and I and ate french fries, and enjoyed going for a wagon ride around the hospital.

We are now on the third floor room 3017.

Ben is now exploring the pull out couch, has watched a couple of cartoons and decided the spoon was too much of a nuisance so he ate applesauce with his hands. Cari just changed his diaper and Ben was trying to jump down and run away -- his favorite game at home.

We have been really worried that he would not come back with personality in tact. For now, we are excited to have our Ben back.

We are still wondering about some of the logistics and timelines. One of the neurosurgeons mentioned that we may not be kept in the hospital until Wednesday when they do the pathology on the tumor. We don't know if that means we are moved all out into the Ronald McDonald, or if we are out of there too because Ben was released. It could be a day, could be two, we just do not know.

For now we are loving playing with Ben . . .

Friday, February 27, 2009

Mail instructions

We have had a number of requests on how to send mail. We can receive mail at the Ronald McDonald House at:

Ronald McDonald House
5130 - 40th Avenue NE
Seattle WA 98105


Finally, we made it through the MRI and the wait for the anesthetic to wear off. Melissa (awesome nurse) is now his best friend because she brought orange Jell-O. He is on cup number three and still slurping as fast as he can go.

New favorites:
The blue "suzie" blanket he was given at Providence before we left Alaska (Suzie was our spotted springer spaniel in Utah. The blanket has spotted white dogs on it). He uses it to hide from the doctors and nurses when he thinks pokes and prods are coming.

Orange Jell-O, 'nuff said . . .

Preliminary MRI results

The Neurosurgeon just came in and says there is no sign of tumor left - YAHOO again!!

This is not the "official" read but he says he will be very surprised if there is any different information later.

The plan for now is to stay in the PICU tonight so that we can continue to closely monitor his sodium and swelling levels and then barring any downturn overnight we will talk about moving to the regular floor some time tomorrow.

My face is just a little swollen . . .

Throughout the day Ben has gotten a little more swollen. We are still waiting on MRI results.

Mom's new friend

Our kids have been totally jealous since the found out we are living at McDonalds . . .

folks we've met

These are the elders that helped us give Ben a blessing before his surgery. So of course I was too slow to write down their names butg the one on the right is from Cedar Hills, UT, the one in the center (Walls I think) was from Arkansas, and the one on the right from Delta, UT.

We were really happy to see them.

Plans for the day

Ben received some balloons and a teddy bear (thanks Parkinsons!!) that he likes to play with. He is kind of just zoning most of the time (go figure) but wakes up a little here and there and plays with the balloons. He has been a little light sensitive today so we have the window shades pulled to keep it less bright in the room.

Today they are watching sodium levels and swelling mainly. Ben is really groggy. He likes having his mom close and you can tell when the pain meds start to wear off because he kind of whimpers and rubs his head and immediately starts to want Cari close. He has some additional swelling in his face that they say will get worse before it gets better -- gives him kind of an alien-esque look.

We are scheduled for an MRI today to confirm that they got everything out. We thought we were "next in line" early this morning but it looks like we will get in around 3pm or so. Could bode for a long day as Ben can't eat anything until after it is over. The doctors and nurses continue to be wonderful. It is impossible to feel sorry for yourself here. You look around at all of the things going on with all of these children and feel extremely blessed.

Dad gets impatient because sitting around doing nothing (except blogging of course) gives my brain WAY too much free time. Cari is fantastic. Here mommy radar is right on. She just seems to be able to sense changes before they come and roll with them. She notices all of the little things. Yesterday she commented on how supported we have been. As we move around the hospital not everyone's phone is ringing, not everyone seems to have "someone" there. I think most of the tears we have shed the last couple of days are from gratitude for all everyone is doing for us. I can't begin to express our gratitude.

Thursday, February 26, 2009

Tender Mercies

We have truly been blessed by the kindness of many people too numerous to note. Our testimonies of angels, of loving service, and most definitely of a loving Heavenly Father and Savior have been strengthened this week and I am sure in weeks and years to come.

Elder Bednar put it most elloquently:

"We should not underestimate or overlook the power of the Lord’s tender mercies. The simpleness, the sweetness, and the constancy of the tender mercies of the Lord will do much to fortify and protect us in the troubled times in which we do now and will yet live. When words cannot provide the solace we need or express the joy we feel, when it is simply futile to attempt to explain that which is unexplainable, when logic and reason cannot yield adequate understanding about the injustices and inequities of life, when mortal experience and evaluation are insufficient to produce a desired outcome, and when it seems that perhaps we are so totally alone, truly we are blessed by the tender mercies of the Lord and made mighty even unto the power of deliverance."

A good day . . .

Ben came out of surgery. YAHOOO!!!
Short version: The surgeon said that it went as well as they could have possibly planned.

Long version:
They made a U-shaped incision starting by the ear ~ish and up arond to the middle of the head, moved back the skin, made a 3 to 4 inch hole in the skull, cut a u-shaped hole in the dura (sp?) to get to the tumor.

There was enough pressure that as soon as they started cutting the dura the tumor started to try to come out on its own so they held it in place while they finished making the incision in the dura. Again, there was a lot of pressure so they went to the back where the cyst surrounding the tumor was and began there. Once they had cut into the cyst it released a lot of the pressure and allowed the tumor to settle back in. They were able to remove the tumor. The outside was very hard and it was around 3 1/2 inches in diameter ~ish -- pretty big for a little guy.

The initial frozen look at the tumor showed that it was not completely benign. Though the outside was hard the center had a lot more "cellularity" than they would have hoped. They cleared out all of the tumor and there was also a a small part of the dura that had been invaded by the tumor. They removed that too.

Lastly they sewed everything up. They replaced the piece of the dura with a patch, sewed up the rest, replaced and sutured the skull, sewed up the scalp. We will have an MRI in the morning to ensure that they got everything. They felt very positive about that because of the hardness of the outside of the tumor but better safe than sorry.

Next will be recovery. The brain was REALLY compressed and pushed over so now it can settle back into place. There will be some swelling and they will watch that very closely over the next couple of days. There is a tumor committee that meets next Wednesday where they will go over all of the details and we will have the detailed pathology back then as well. At that point we will make some decisions regarding the next steps.

When we came into the room I think both Cari and I had visions of the worst but there lay our little boy. He was blinking and semi awake. He seemed to recognize mom a little and was moving his arms and legs around. Whew . . .

Today is a good day. . . .

Tic, Toc, Tic, Toc . . . . .

Well, Ben is in surgery now. He went in around 110pm finally. Cari carried him from the room to just outside the surgery room. They gave him some anesthetic and told us to get our kisses. Ben likes anesthetics because when I leaned over to kiss him he gave me a huge grin and giggled.

About an hour later we got an update and he had giggled and flirted the whole time they had been getting him plugged and poked for monitors, catheters, iv, etc.

Around 4pm we got another call and they said they had most of the tumor out and were working on the rest and would probably be another hour and a half or so.

Hours go by slowly but we are hopeful that all is well.

Ben loves his hoops

The morning drags on as we wait for surgery. Ben has been doing well. He decided to play hoops for a while. He has this slam dunk thing down pat. Not too bad for only having a left hand . . .

He is with us

Candice sent this great quote.

"None of us will escape tragedy and suffering. Each of us will probably react differently. However, if we can recall the Lord’s promise, “for I the Lord am with you,” we will be able to face our problems with dignity and courage. We will find the strength to be of good cheer instead of becoming resentful, critical, or defeated. We will be able to meet life’s unpleasant happenings with clear vision, strength, and power."

Thanks to all of you who continue to inspire us, love us, and make us laugh.


So here are the pictures. You can see the mass on the right side of the picture. Remember he is looking at you so it is on his left side. The picture that has the target on it you can actually see the mass and then the fluid cyst surrounding it. You can kind of also see the center line between the hemispheres that is pushed way over.

Wednesday, February 25, 2009

I'm not hungry -- I'M HUNGRY!!!!

Ben woke up hungry around 6am when I arrived in Seattle. Unfortunately, because we did not know the time for his MRI he could not eat. He got 2oz of juice at 8, at 9, at 10, and at noon. He was as grumpy and mad as he could be all day long.

Finally at 430p he got his MRI in preparation for surgery in the morning. After he came out of anesthesia we got the thumbs up for food. Three jello cups, three yogurts, and a chocolate pudding later . . .

We played nerf basketball, he laughed, it was GREAT! Can you really ever have enough JELLO??

He said...she said

So Dad pretty much got the story right but I'll add a more precise timeline.

Feb. 8th late evening Ben threw up. No signs of a cold flu or fever. Also the first time in Ben's life to actually throw up.

Feb. 10 sitting at the dinner table, Ben throws up again. Again no other signs of illness. Maybe a little sleepier and irritable at times.

Later that week Mom worries about the lack of cold/flu symptoms and the increasing sleepiness and crankiness. Our pediatricians nurse returns our call and says there is a virus going around. It's probably that. The doctor is out of town until Monday.

Monday...hey we have a well care check for Ben, Elizabeth and Nathan today! Mom forgot. Everything looks okay. Ben falls asleep after leaving the doctors office though. It's only 9:30 in the morning. He also was not his usual self with the doctor. Still just clingy from the virus?

Tuesday/Wed Mom thinks her beautiful baby looks weird. Is his eye crossing? She hopes not. The next day Dad says...his eye is crossing. Mom hadn't said anything to Dad about it... Another message is left with the pediatrician. The response is a referral to see the opthamologist.

Saturday night (Feb 21) Mt. Benjamin blows all over Mom again. Mom and Dad are a bit freaked out by the vomiting, crossed eyes, and lethargy. They consider the ER but decide on a blessing the next day instead.

Sunday, more lethargy. Ben sleeps through half of nursery. Jeremy Miner helps Johnny give Ben a blessing after church. Dad is concerned after the blessing.

Monday was a beautiful sunny day in Anchorage. Benjamin did have another early morning nap but he also wanted to go out for a walk. At 3:00 we went to the opthamologist. The Dr was not really concerned about Ben's crossed eyes at first because we have a family history with this problem. After eye dialation however, the Dr changes her mind and places a call to Ben pediatrician. Mom and Ben are told that the optical nerve is supposed to resemble a donut with an opening in the middle. Ben's optical nerves are full instead. Mom and Dad are sent to the hospital, told to check in at the front desk and then head upstairs to PICU. Mom called Dad on the way and said please come. Thanks to the Pettijons for babysitting and transportation! An MRI reveals a lesion on the brain. The solid mass is about 6 cm by 8cm, but there is also a fluid filled cyst and signs of swelling of Ben's brain. Even mom and dad can read this MRI. The thing is HUGE. Plans are made for transport to Seattle the following morning.

Tuesday morning Dad stays behind to get the kids situation and Ben and Mom head to Seattle.

"It's a tumor"

The pictures show a mass about 6cm by 8cm (baseballish in size) in the upper left front of Ben's brain. It is sitting on the brain and looks accessible. Then plans started. Providence Hospital immediately arranged for transport for Cari and Ben to Seattle Children's Hospital.

Dad headed home and packed mom a bag. Dad's lack of fashion sense was immediately obvious because I don't think I got even one outfit correct, but at least there was clean underwear . . .
Dad and siblings headed up to the hospital Tuesday night for kisses and hugs. It is all still a little surreal. The siblings all loved on Ben for a while then Dad took kids home to go to bed.


First we checked with our favorite doctor, Dr. Uncle Mike. He counselled us to get Ben to an eye doctor as soon as possible. We are grateful to our favorite Dr. for getting us on the right path quickly. As I said before, since there is only one pediatric opthalmalogist in Alaska we had to wait a few days to get in.

We decided to have Dad pedal home from work early and Mom take Ben to the eye doctor. Upon cursory glance and with the family history of crossed eyes the eye doc was not overly concerned. She wanted to confirm so they dialated Bens eyes to take a look at the nerve. This is where my vast medical knowledge and explanation might get a little hard to follow . . . I guess the nerve is supposed to look like a doughnut -- hollow. Ben's was solid.

They sent Ben to the Hospital immediately for an MRI. Mom called Dad and we began figuring out how to get to the hospital when the only car is already there and the bicycle is way too slow. The Pettijohns were lifesavers. Joy took Elizabeth, Megan, Samantha, and Nathan to babysit. Mark ran me up to the hospital. I got there and went to three different offices and finally was able to find Cari and Ben in the Pediatric ICU getting ready to be sedated and get his MRI.

After being sedated Ben got to go into the MRI. Cari went in too and Dad went to the waiting room. No metal can go in and dads wedding ring won't come off any more. After looking at the MRI the doctors were able to confirm a mass in Ben's head.


On Sunday Feb 8th Ben, Cari and I were watching some TV after the other kids went to bed. Out of nowhere Cari is suddenly covered with projectile vomit. There has been some flu going around so we didn't think much of it. A couple of days later same thing. Again, we were not really worried because of the flu going around.

Last Tuesday (2/18) Cari noticed that Ben's look just wasn't quite right. Gotta love mommy radar. Dad noticed on Wednesday that it looked like Ben's left eye was crossed. This confirmed mom's fears. We weren't too concerned because there is some family history of eye crossing. This is where living in Alaska gets interesting. There is one pediatric opthalmalogist in the state. We were able to get an appointment on Monday afternoon.