Wednesday, December 16, 2009

Airplanes and Santa

Ben has been energetic, active, and enjoying life at home over the past three months. Yesterday was our next check in MRI to see if anything nasty has returned. We have to keep remembering that Ben's cancer is a highly recurring type and to enjoy every minute. Over the past few days Cari and I have both felt the stress of the next MRI beginning to weigh on us. Emotions tend to get pretty close to the surface and you just always wonder what will be.


We got to the hospital for the MRI at around 730am after dropping off the other kids at a friends who would take the girls to school and Nathan could play at home with their son. They put numbing cream on his wrists and gave him some versed to get him to start calming down. After they put in the IV it must have looked a lot like an airplane on his wrist because Ben started playing with the board and IV like it was one. He flew it around the bed and it crashed multiple times. Then it seemed to transform into a fighter jet or maybe Iron Man's arm because he was shooting everythig from Sponge Bob on the TV to the bed posts.


He went in for the scan just fine. Cari and I went and got breakfast and then waited in his room for him to return and then to wake up from being sedated. Again, while waiting you try to read every statement, every emotion from anyone who walks into the room while you are waiting. This time the chaplain came in to say hello. The alarms immediately went off in my head that the answers were going to need a chaplain. Then the pediatric oncologist came in and said the magic words: "It looks like it is going to be a Merry Christmas". WAHOOOOO -- three more months clear of cancer. We know they need to take the scans to the Tumor Board at Seattle Children's and do longevity comparisons, etc., etc. but we will take no baseball size tumors for now.


We celebrated by taking the kids all tubing at Kincaid Park. It was cold and already getting dark at 430pm but everyone had fun and we were all excited to have another three months together.


We love you all and Merry Christmas from Ben and the rest of us!!!

Monday, September 28, 2009

Signs point to YES . . .

We had to be at the PICU this morning at 7am for Ben's MRI, kidney function test and lumbar puncture. We got checked in and then kind of hung out while the numbing cream and Versed (a tranquilizer???) took effect so Ben could get his IV in his hand. Ben likes Versed. He gets pretty happy.


Once the IV was in (9am~ish) we walked to the MRI room and left Ben with the doctors. We had a couple of hours to kill so we got some breakfast and then went back to his room to wait for him to come back. The time went pretty quickly, but I definitely like Bob Barker better than Drew Carey on the Price is Right. Once we Ben got back they did the lumbar puncture. While the doctor was doing the puncture the doctor said something like, "I like to see the scans for myself. and "I can get the verbal report but I really like to see what is going on so I can better explain it". Immediately my mind went to the worst possible scenario. We sat around waiting for Ben to wake up for a half-hour or so. After two hours under anesthetic it took a while on oxygen before he was interested in much.

When Ben finally started coming around he was VERY groggy. Even with the enticement of french fries, he was pretty out of it. The doctor came in and we braced for the news. He said that it looked as good as it possibly can. Ben's brain has continued to fill in the space once occupied by the tumor. There will still probably be some ongoing adjustments there; his counts all were in good ranges; there was no sign of cancer cells in his spinal fluid. WAHOOOOOO!

We are extremely excited to say the least. They will send these results to Seattle for final reading and evaluation by Ben's team. One of his doctors is headed to Alaska in a couple of weeks and we anticipate having the opportunity to meet with him. We are just happy that this hurdle is over. After having this be so totally consuming since February it is a little different not to have an appointment scheduled or to know a new test schedule.


One of the negative attributes of ATRT cancer is that it has a high rate of recurrance. For now we plan to simply live every day. To that end we will probably not spend much time here updating the "wild adventure". It has truly been an adventure thus far and will continue to be I am sure, but with no immediate news (other than the hopeful return of Ben's hair) I imagine we will spend most of our time chasing kids and their various activities rather than updating the blog.

We continue to be every grateful for the love and support of family and friends. Many we have met along this journey, and many more who have just always been there when we needed them. To friend both old and new, Ben says thanks!!






Signing off - - - - It is time to go get Ben into the tub and try to scrape off the layers of cotton candy and ice cream from the celebration party we had for Family Home Evening!!


Love,


The Allreds

Monday, September 21, 2009

No more eyelashes

Well I guess Ben isn't quite done with his chemo side effects. I looked closely at him the other day and found that he has only one lower eyelash left and the top ones are getting thinner by the day. It really looks weird to have no lashes! Good thing he could care less. Ben still gets stared at everywhere we go. My favorite is going to pick up the girls from school. When classes pass by us, in a line of course, every single kid turns as they walk by to get a better look at Ben. He is going to grow up with a serious "its all about me" complex! He is so happy though and we are so glad to be home!

Wednesday, September 16, 2009

No more Tubes!!

Ben had his surgery this morning to have his Hickman Catheter taken out. I called to see if he was sore, or cranky. He had just moved the rocking chair over to the pool table, climbed up and begun to launch pool balls all over the room so it seems that he is feeling pretty good.

Friday, September 11, 2009

Additions to the team

We have been meeting with our Anchorage team members for a couple of weeks now. Good news, it looks like Ben will be getting his catheter out on Wednesday. WAHOO, no more plastic covered baths and "one-sie" undershirts that are not nearly long enough for his long torso! I think Cari was considering "dropping" some scissors nearby and "accidentally" ruining the tubes if there had been any hesitation about removing the catheter. Ben is more than ready not to be forced into maintance cleaning episodes any longer. We are scheduled for our next MRI and lumbar puncture on the 28th and will hopefully see no signs of returned cancer.

For now, Ben is loving running around with his siblings. He hates getting left out of any game or rough-housing. He has all the moves of Kung Fu Panda and can flash his lightening bolt just like Lightening McQueen. His sisters can hardly leave him alone. The only time they seem to leave him is when they are fighting to be nestled into mom's side, and with only two sides and five kids there is a significant amount of rooting, pushing, pulling and jockeying for position (and usually some tears . . .).

We are so grateful for the continued support of our family from everyone. We have truly been blessed through this experience.

Wednesday, August 26, 2009

Triumphant Return!!

Monday (8/24) Ben went in for regular labs. His platelet count was not high enough for them to remove the catheter in preparation for his return home. That was the last “to-do” left to get “to-done” before heading for Alaska. Not having been smart enough to purchase flight trip insurance when we purchased our tickets we got the opportunity to pay some exorbitant fees to Alaska Airlines when we changed flights for home. The cost of an entire new ticket and a few hours later, Ben and Cari are finally home in Alaska!

Since it was kind of a last minute change we decided to keep it a surprise for the kids. Cari and Ben arrived in Anchorage yesterday just in time to go and pick up the girls on their first day of school (or at the end of her first week for Elizabeth). Nathan and Grandma successfully navigated their way to and from the airport. Cari decided to go get the kids from their classrooms. Megan looked and just stood there because – (her words) she thought it was just a dream. Sammy took a minute and then was surprised. Elizabeth lost her mind and has not let Ben out of her sight since they arrived home.

We are extremely excited that this part of the adventure is over. Now we wait. . . .Hopefully all of these pokes, prods, stabs, and sticks have done what they were intended to do and we will not see any more signs of ATRT.

Ben let Cari out of his sight for a while and ran around the house with his siblings. All of them are glad to have him and mom home. I don’t think Ben or Cari are too disappointed either. Cari is now milking the “I don’t know where you have put anything, you’ll have to . . .”. I can’t imagine that anything has really changed in six months and one day have they?

Ben and Cari's contact information is now (hopefully for a long, long time):
7640 Jason Place, Anchorage AK 99502
(907) 243-0039

Thursday, August 20, 2009

Long Day

Today was a very long day and I am exhausted....so why is Ben sitting at the table coloring when it is nearly 11 oclock at night?



We started the day off by heading to the hospital for a blood test. After the test they called and said that his platelets were less than 5. So we needed to go back to the hospital so they could give him platelets. Before giving him platelets they gave him some medication so that he wouldn't have an allergic reaction....no such luck. The transfusion had barely started when hives broke out on his arms. They had to stop the infusion and give him some different medicine to stop the allergic reaction. Apparently the more often you get blood products the more like you are to react to them. Ben still needed to get platelets but they couldn't give them the ones that caused the reaction. We had to wait for new platelets. Fortunately no reaction this time. We left the hospital at about 6pm. If I had slept last night... I guess the good news is that his reaction was mild and they were able to give him the platelets he needed! Now if he would just go to sleep!

Friday, August 14, 2009

plane tickets

Ben is at the hospital today recieving the last of his stem cells today. Hooray for final treatment! We are so excited! They said we can leave on the 28th, barring any illness. We wasted no time buying our tickets. We can't wait to go home!

Sunday, August 9, 2009

The Last of the Chemo!

Benjamin checks in to the hospital tomorrow morning to begin his last round of chemotherapy. Hooray!!!!! It feels so good to be finishing up treatment and looking forward to heading home.
After Daddy and the siblings left on Wednesday, Ben and I were a bit sad....but it didn't last too long because we got and impromptu visit from Aunt Hopie!



Oh what fun we had!!!! We loved, laughed, shopped, and ate the yummiest cupcakes ever with our friend Carolyn. How blessed we are to have such wonderful friends and family!



We also had a visit from Ben's future wife. My friend Emily and her family were in town for a wedding and we got to visit with them both Friday and Saturday evening. Apparently all of the pictures ended up on Emily's camera so....
Again, what wonderful family and friends we are blessed with!

Friday, August 7, 2009

Better Than Ponies

You can imagine how tickled Ben was when his daddy showed up at his doctor appointment last week. As good as ponies are...daddy is better. Now just imagine the betrayal and sadness as Daddy and Ben's siblings drove away on Wednesday. Ben just loves being with them. Soon...hopefully by the end of the month...Ben will be able to go home. Ben only has only one more chemo/stem cell treatment left. Then we wait for him to get sick and then recover. There are a few tests that need to be run and his blood counts need to be good before Ben can leave. Ben may not be able to see the light...but Mommy can!

Friday, July 31, 2009

Amazing Gifts . . .

Many kind people donated their time and services to give Ben an awesome birthday party. We all headed over to one of the parking lots at the hospital where the staff had put upa big awning tent and placed straw around it and brought in a couple of ponies for pony rides for Ben and his siblings.

















Wednesday, July 29, 2009

Funny Benjamin

Nice outfit eh? Mine was just about as good yesterday. We went in to have a blood transfusion yesterday morning and he puked all over himself and me as we sat in the waiting area. My kind nurse managed to find scrubs for me and a hospital gown so we didn't have to wear our grody clothes for the next 5 hours!

This is Benjamin's latest food love. Guacamole! He'll eat it for breakfast, lunch, or dinner and he can eat the whole avacado himself!
Benjamin was putting his popsicle to bed in this picture. He lays the popsicle, wrapper still encasing it, on the pillow and then puts the blanket on top. I'm not sure where he got this idea! The other funny part about this night was this is not his bed. Note the pillows on the ground...He brought his pillow and blanket into my bedroom and set them all up. Guess where he slept that night!

And here we have Ben's favorite movie. We watched it all day everyday last week. Apparently he wanted to watch it last night before bed... this is how he fell asleep! He really is a funny dude!




Sunday, July 26, 2009

Blackberries Revisited & Mountains of Poop

I know...its a disgusting title but... it was a disgusting day. I weaned Ben off one of his antinausea medications and then got behind on the one I am still giving him so.....the delicious blackberries we picked and ate as we walked along the trail came up to say hello again. I wonder if Ben will eat them still? Then later Ben, who hasn't had a bowel movement in a WEEK, finally had a bowel movement. One bath, floor mopping, and a trip to the outdoor garbage can later.... That was seriously a weeks worth of poop! (I even threw away his undershirt!) What a fun day!

Thursday, July 23, 2009

Free Again!

Not from the hospital...at least not until tonight! But free from isolation. Hooray! Now Ben can leave his room for walks or even visit the children's playroom. It was kinda funny because as soon as they said it, he was ready to go for a walk. Do you think he hears and understands what is going on?

He got his chemotherapy on Monday and Tuesday, took a break yesterday, and then got his stem cells today. Unfortunately he has thrown up once every day. We are continuing his antinausea meds. In fact, he is using two different antinausea meds this round. He is somehow managing to keep his weight up so we haven't had to have a feeding tube. All in all, things are going as well as can realistically be expected. Who wants to be realistic though?

Wednesday, July 15, 2009

Food & Fun

Ben's favorite food lately is popsicles. You would be surprised how many he can put down a day! He is also quite picky about the flavor. He no longer likes orange. I don't know if he got too much of it or if the medicines he is on makes them taste weird.... Jello, any flavor, is also off his list.
Here's the "fun"...I don't know if it was fun for him to do or just fun for mom to clean up! Whatever the case, he is obviously proud of his latest art work. Thanks to a little help from rubbing alcohol and baking soda, this art project is a thing of the past!
Ben is feeling good this week. Monday he goes back in to start the next round....

Friday, July 10, 2009

Yuck!

I asked Johnny if the last posting sounded pitiful...he said yes. Well, sometimes I guess I feel pitiful! Fortunately that is not always the case. The funny thing was that I found out my telephone in the apartment is broken. No one had been able to get a hold of me for a couple of days! Too funny!

Yesterday was not Ben's greatest day. It seemed to start out okay. He ate a few bites of pancake for breakfast and drank a little bit of milk. We even went for a walk to the park where we played until a daycare group showed up. His day went downhill from there. He was moody and clingy. He didn't eat or drink anything. And then the diarhea started. It sounded and looked a lot like baby poop. Needless to say we spent the afternoon on the couch just watching PBS and changing clothes and diapers....his and mine...clothes not diapers! Then just after five oclock he crawled off my lap and walked over to the now cold hot cocoa I had made trying to entice, force, coerce him to drink earlier. And he drank the whole cup! I started in on some dinner. I offered him his favorite soup with crackers and a bean burrito. He took a couple of bites but was fairly uninterested. Then he opened the fridge and started looking. He wanted eggs. I thought, whatever, I'll just throw it away if he doesn't eat it. But he did!!!!! He made me cook him a second and he ate that one too! Woo Hoo! I thought we were past the worries because the rest of the evening seemed to go just fine. Then when I went to go to bed, Ben woke up vomiting. By morning I had one bed he had thrown up in, another he had leaked diarhea all over, and mine he crawled into with his leaky diaper! Oh YUCK! Thank goodness for a washer and dryer in the apartment! Thank goodness Johnny got here at two in the morning and can help!

Wednesday, July 8, 2009

Bye bye babies

Elizabeth and Megan headed back to grandma's house on Tuesday leaving Ben and mommy alone in Seattle. A day is really long when you have nothing to do. Mommy goes running, Ben goes in for labs, and they both eat....Mommy more than Ben... We'd love phone calls!!!! Daddy says he'll come see us again this weekend. That will help a little, but what we really want to do is GO HOME!

Sunday, July 5, 2009

Zoo Again

In an effort to find something fun to do while avoiding germs, we took the girls to the zoo yesterday. They really wanted to go to the aquarium, but that is indoors with crowds of people... so zoo it is! Look at this cute "chick" that just hatched!

Ben got to touch the turtle but note the lady holding the hand cleanser. We washed and washed and washed all day long!

The girls started fighting over who got to be in the wagon. They wanted to ride but they couldn't stand to do it together. Alaina and I were more than frustrated with their behavior so...we just got silly! Here she is pulling me and Ben in the wagon instead.
...And behind the wagon, Lizzie and Megan were pulling Mom's hair. That didn't last too long, but look...they are smiling!


Besides avoiding germs, Ben is also supposed to avoid the sun. Alaina bought him this great hat that pretty much covers his whole face! Sunscreen had to take care of the rest of hime!




Puke Bucket

Well so far Ben has only vomitted two times. Not fun for Mom who worries about him, but also not unexpected. For the most part Ben looks as happy and active as ever. The constant blood count checks begin tomorrow morning. Because the chemo drugs he is on right now are different than the ones he was on before, we really don't know what to expect.

Wednesday, July 1, 2009

Alligator Moons & Chicks


Ben is as energetic as ever. Here he is wrestling his blowup alligator. He is also riding "the rocket", doing puzzles, building blocks, and watching WAY TOO MUCH televsion!

I didn't dare put the moon picture on.... Ben's diaper needs to be changed about every hour or so because they have him on IV fluids. That means we go through a lot of diapers fast. Unfortunately the package of diapers they brought us are defective. The adhesive strips aren't securely attached to the diaper so we spent the day being mooned by Ben.




Here are the chicks! Alaina, Elizabeth, and Megan arrived in Seattle this morning and Ben is so happy! They spent the day in the hospital with us. We decorated flip flops, went swimming, and ate popcorn while watching a "chick flick" of course! The hard moment was bedtime. Alaina had to carry Megan out of here crying because she wanted to stay with mommy. Mommy was holding Ben who was crying and saying, "I want to go!". Mommy wanted to go too... We still long to be together as a family.



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!

Saturday, May 30, 2009

Kemah Boardwalk



We drove down to the Kemah Boardwalk today. It is a mini-amusement park, a bunch of restaurants, and shops right on the shoreline. Ben was pretty jazzed because he got to meet Sponge Bob right off the bat.
We got there about 10am and it was still very quiet. We decided to go for a speedboat ride. The boat was called the Beast. We got out past the wakeless area and the cool wind from the speed was great. Then they had the crew get in the front of the boat and slowed way down. I was sitting on the edge and got completely soaked. Ben got splashed some sitting on Cari's lap and Cari hid behind Ben. Despite this act of cowardice she was not spared and got pretty wet herself. We wandered around the Boardwalk for around 5 hours today and I never did get completely dry.
Next we found the "yee-hah's". Ben loves carousels. He must have ridden it six or seven times during the day. He really had a blast. Mom and dad took turns standing in the shade while the other rode round and round.


The next ride were the kids planes. They are designed to gho up to about 8 feet and then down to a couple of feet and round and round. You can see how cramped the quarters were for Cari. Well, dad was the first one to ride with Ben. I squished in sideways and off we went. The didn't give us a warning, however, that we were FAR exceeding the weight limit. When the other kids planes went up to 8 feet, Ben and dad's would only go up to about 4 feet. Anyway, the ride attendants, mom, and dad all got a good laugh out of it. Cari decided to rescue Ben and give him a real taste of what the ride was supposed to do.




Next was the ferris wheel. There were no other riders so it was pretty quick on and off. Except for a dough head attendant who slammed Ben's fingers in the gate when he was locking them in all went pretty well.


This is where all of the pilots who can't fly thier planes above the 5 foot mark get sent. . . . .
All in all we had a fun day. The sun was hot enough to rip the hide right off you. I have set an audition to replace Rudolph for next Christmas with my glowing forehead. Cari and Ben either wore hats or were smart enough to stay out of the sun more than I.
On the way home we drove past NASA. We would have been excited to see a rocket standing their or a shuttle or something, but no, only lots of buildings. Maybe another time. It was a really fun day for my last trip to Houston.