Monday, June 29, 2009

Round 3


And it begins . . .

Cari and Ben checked in this morning around 8am. That makes for an early morning getting packed, eating breakfast, and getting things ready for both living in the hospital and for visitors to arrive. They started on fluids not long after Ben got settled in a room.

The first room they got sent to was REALLY tiny. Odd because the floor is kind of a ghost town today. The crib in the room barely fit. Cari asked for another space since Ben is still on isolation and will have to stay in the room not only for the meds but to play between doses as well. They got another room without too much heartburn -- or at least that is how it was presented to me anyway. Hopefully they will be able to relax and rest some today while Ben gets his meds. He also got two new prescriptions to go along with the chemotherapy -- an antibiotic that is supposed to head off pneumonia that frequently comes with chemotherapy and an anti-fungal medication to stave off the fungi that sometimes attack the system when the defenses are down.

Cari is WAY excited to see Elizabeth, Megan, and Alaina tomorrow. All seems to be going well with getting started with this round. We continue to be grateful for all of the prayers and kindness we receive on a daily basis.

Saturday, June 27, 2009

Space Needle and such

Today was a pretty hoppin' day. We started out with the audiologist at 9am. The chemo drugs that Ben is taking have been known to impact the ability to hear higher pitches. He sat and let them put the earplugs in his hears (first time) for the testing and then when he got bored did some "field" testing for sound. The only bad news there was that Ben could hear the sounds and react and dad could not. It is not just selective hearing when Cari talks . . .

Next we went and did labs and then had a 3 hour wait until our meeting with Dr. Geyer. We wandered around some of the gardens at the hospital and then found a biker group in the parking lot that were showing their bikes to the kids in the hospital. Ben was a little torn, bikes or hippo??? He rode the hippo statue a little and then went to play on the motorcycles. Cari made the comment that if you promise to get old enough to be able to ride one, you can. The bikers said to "get that contract in writing". Cari said she was more interested in having the other half of the contract in writing -- that of Ben being around to become a biker.




After the bikers we had a great meeting with Dr. Geyer. It was a good meeting. Dr. Geyer has always been pretty straight forward about our odds in this battle. He was very positive about the labs, the MRI, the audio test, and our prognosis. I think both Cari and I left knowing we are not out of the woods but that things have been moving the direction we will continue to pray for.




As we were leaving the hospital we got a call from Uncle Reed, Aunt Kay, Brianna, Andrea, and Kathryn. They had made a special trip from Portland where they were attending a funeral to visit. It was GREAT to see them!! Ben decided he wanted to play like he was a knight. There has been lots of talk about cognitive concerns due to radiation treatments. I think he is doing okay if today was any indication of his cognitive abilities. First, he played swords with Brianna. Notice that his sword (stick) is about two-and-a -half feet long. The sword he chose for Brianna was about four inches. Not so dumb, eh . . . After easily vanquishing the dark knight Brianna and her paltry dagger he moved on to Kathryn.


Feeling that the dagger challenge was well beneath him he provided a foot long sword for Kathryn. Again, Sir Benjamin reigned victorious. He chased the girls through the maze, giggled while they pushed, and pushed, and pushed him on the swing (and pushed, and pushed, and pushed . . .). Since our travels in Seattle have been limited to walking distance we took up the offer to go and see the Space Needle with Reed & Kaye and their girls.



We piled into the SUV and headed downtown. After arriving we were dismayed to find that it costs $16 to ride the needle to the top. We were all too cheap to pay the fare to ride an elevator. You know that expense is a regular complaint when the wandering tour guide has a prepared speech about how if the cost of the needle ride had grown with inflation from the time the needle was built and the original cost during the World's Fair blah, blah, blah, blah . . .


We wandered around for a bit at the Needle. Everywhere we went there was Michael Jackson music playing -- go figure. Brianna walked ben down to a cool fountain. I think she might have been more bummed than him that he could not run in and get his tubes wet . . .
We left the Space Needle and were to meet Kelly and Mike Kinney and some of their friends for dinner. They were up from Houston on vacation. After some really bad directions from dad, Reed was able to get us through the maze of streets to the restaurant and drop us off so they could head back for Portland. We are so very grateful for the love and support of family. To drive 4 hours one way to hang out with us for a little while was truly above and beyond. Thanks Hammonds!!
At dinner, Ben splashed water, threw crayons and generally went nuts waiting for food to arrive. I guess he really was not to much to handle. Dinner was pretty good other than Cari found a bug crawling around in the bottom of her bowl. She had wondered about the delicious "raisins" in the salad anyway. The restaurant was grateful to comp the meal . . .




After dinner we went for a walk on the piers. Ben was in heaven again running with the Kinney kids. Wells, Jack, and Quincy all took turns either being chased or chasing around and around and around the pier. We walked down past the Aquarium and found a game center with a carousel. Cari commented that she wonders what carousel addicts become as adults because they are definitely one of Ben's favorite things in the world. We had green (apple) cotton candy, and donuts, and drinks.
We walked back to the restaurant and Mike drove us back to the RM house. All three of us hit the bed sound asleep. We were beat. What a great day . . .

Monday, June 22, 2009

New Digs

We have moved again. Here is the address:

Benjamin Allred B14
c/o Ronald McDonald House
5130 40th Avenue NE
Seattle WA 98105

Our social worker stepped in and arranged for us to be in the apartments. Hopefully this will keep Ben from picking anything up, germs and so forth. It is huge and I am already feeling guilty, hoping we are not keeping someone who needs it more than us from having it. It has been nice though. The kids are much happier particularly Alaina and myself. I'll post some fun pictures soon!

Wednesday, June 17, 2009

MRI

Ben had an MRI today. When we met with the doctor afterward he said that he thought it looked good. One more good test...hooray! We've still got some more testing before we start the chemotherapy.

While we wait we might as well play. Ben and I are totally enjoying having Aunt Alaina, Samantha, and Nathan here. We spend a lot of time outdoors at the park. Tomorrow we are going to try walking to the beach. Hopefully Alaina and I won't have to carry the kids....

Monday, June 15, 2009

Home Again

I think Benjamin recognized to Ronald McDonald House here in Seattle. We got "home" late last night and were met by a kind friend. We are glad to be back because it means we are that much closer to going to our real home in Alaska. (mid September maybe) Chemotherapy will not start for about two weeks. Part of the reason for the wait is so that his body can heal from the radiation treatment. They typically wait 2-6 weeks. We are going for two. The other reason for the wait is they have some tests they need to run such as a new MRI. We hope it is clea r. On a more fun note, Aunt Alaina, Samantha & Nathan will be spending a week here in Seattle with Benjamin and I. We hope to have a really fun time!

Here is our address:
Benjamin Allred A278
c/o Ronald McDonald House
5130 40th Ave NE
Seattle WA 98105

Email me if you need our phone number!

Saturday, June 13, 2009

Gong Out II


Here it is. Ben's last day of radiation. He has no idea of course. For him its just another day. We checked in at the front desk and then Ben went to have his vitals taken.




After vitals we went to the upstairs playroom to wait for his turn. They have been a couple of hours late all week so.... Today they were early!!!!! It's time to hit the gong!


Bongggggggggggg!!!!!!!!


Cheers! Hugs! Balloons! Presents! (They gave him the monkey that he has hugged, kissed, and danced with every morning.)


Nothing to be afraid of in here! Time for a little nap while the machine does its thing.



Meanwhile the food is laid out. There are at least five people gonging out today. There was fruit, bagels, muffins, kolaches, chicken minis, cheesecake, carrot cake, etc... Thanks to Kelly for putting on a great spread!

Ben is not asleep anymore! It is time to EAT!!!!! He looks a bit like a newborn pup...his eyes are closed but he is stuffing it in!


Do you like the napkin the nurse put under his chin so he didn't get his shirt dirty?



It all ended with a sponge Bob cake! It is supposed to read "Leaving for Bikini Bottom" but.... Ben and Trent didn't really care! Happy Gong Party!









Friday, June 12, 2009

Gong out

Well Ben hit the gong today signaling the end of his radiation therapy. We have left the Ronald McDonald House and are staying with Kelly for a couple of nights. On Sunday we are returning to Seattle to continue with chemotherapy. It has been a really weird and emotional day for me, (Ben's mommy). I think these transition times are times where I have to think about where we are and why. Ben has a brain tumor. Ben has a nasty brain tumor. And I get scared... And I have to remember how blessed I am to have Ben.... How happy and alive he is despite everything... But most of all I have to remember who is in charge... And then I move on.

Monday, June 8, 2009

My new look . . .










Like my new look??

Sunday, June 7, 2009

Proton Beam Radiation

When we arrive at the Proton Therapy Center each morning, we check in at the front desk before heading downstairs to do vital signs. His cute nurse, Matricia, has nicknamed him Benji. He has become so comfortable with her that lately he just walks in, sits on the chair, and lets her take his vital signs. (When we first got here we had to hold him down and try to distract him in order to get vitals done.) After his vital signs we go sit in the waiting room until the radiation team is ready for him. Sometimes it is over an hour but usually its more like half an hour. When the radiation team comes to get him, he runs smiling to them. Maybe he thinks its fun???? Or maybe he's just smart enough to know that when it's done he get to eat????
The first thing he does in the room is pick a monkey hangin from the machine. He likes the black one the best.

Then he sits down, notice he's not on my lap anymore, to get his anesthesia. Lately they have been letting him push the buttons on the machine that pushes his medicine in. Most of the time he just lets out a big sigh as the medicine takes affect. Then they lay him down on the table.
It's hard to see because this picture is so small but he is totally out of it. They are positioning him. He has to be in the exact same position every day so they do an xray each morning to make sure he is positioned correctly.
This is my favorite shot. They put this woven plastic mold on his face, again trying to hold him in the right position. They they tape an oxygen tube across the nose opening. We get to keep the mask when we are done....lucky...

Then Mommy leaves....and they do what they do to her sweet baby Ben. What a crazy life!


Wednesday, June 3, 2009

Getting a Facial

While eating yogurt the other night, Ben decided he needed a facial.... If you look closely you'll see he applied it handful by handful. You can actually see the handprints where he slapped his hand against his head and face repeatedly until it was covered. He is sooooooo almost two years old! It is funny how much energy, creativity, and curiosity he has. I managed to laugh at this latest escapade and even got a picture before cleaning him up.

I don't know if you can see the radiation burn on his head very well in these pictures but he does have some. It is getting darker and redder right at the front where he had his brain surgery. I'm not sure how bad it hurts but they have told me it is probably tender. If he can just hold out a bit longer... his last treatment is Friday the 12th!