Thursday, April 3rd is Big Boy Night

COME JOIN US AT THE WALLED LAKE BIG BOY 800 N. Pontiac Trial, Walled Lake, MI 48390 TO HELP THE FAMILY OF KEVIN SAARELA, (RACHEL HERR), THURSDAY APRIL 3, 2008 5:00 - 9:00 pm.

Kevin is a second grader at Glengary Elementary who was diagnosed with a malignant brain tumor called Medulloblastoma. Kevin is currently going through treatment at St. Jude in Tennessee. Money raised will go towards medical, travel and living expenses. Kevin is expected to receive treatment for approximately one year.

10% of the total bill will go to the Family of Kevin.

There will be prizes/50-50 Raffle. T Shirts will be for sale.

Additional Fundraiser "Children's Coin Donation" - have your children bring in spare change to help Kevin and his family.

If you would like to make a donation please make checks out to Kevin Saarela Cancer Fund

Please mail to: 4070 Vanstone
Commerce, MI 48382

Thanks you so much.

Carole Costa

Kevin and (soon to be) Uncle Justin Shave their heads!

Kevin's hair was coming out, and not just in small patches. It took one trip to Fantastic Sam's and then I cleaned it up the next day as Kevin's shunt made the stylist a bit hesitant to shave it all off. One of the deals my (bonus) sister, (Nicole) finance, Justin, made with Kevin when he was in the hospital here in Michigan was he would shave his hair off too when Kevin lost all of his. True to his word he got news of Kevin's hair and shaved his head to. Way to go Uncle Justin!

Here is a picture of Justin & of Kevin getting his hair cut. Kevin has yet to let us take a picture of him without his hair.

NO SEDATION!!!!!!

(this post written by Kevin's Dad, Eric Saarela)
Mom has a well deserved week off, so dad has the pleasure of staying the entire week with Kevin at the RMH. I arrived on an early flight Thursday morning, and surprised Kevin when he was in the recovery room (following sedation) for his radiation treatment. He was full of hugs and I love you's....I think it was the aftereffects from the sedation talking. Thursday was his last radiation treatment for the spine and entire brain. Friday was his first treatment of about 4 weeks for radiation specifically targetting the tumor bed. Since this a localized area, each session takes only 15 to 20 minutes, 30 minutes on days they take pictures/x-rays. Friday was a significant day, as the plan was to begin the second part of his radiation treatment with no sedation. Rachel and I worked hard talking with the Dr and radiation technicians to convince them to try treatment without sedaion. They were reluctant during the first phase, as consequences were greater while dealing with the spine, and the duration of each treatment was much longer. Rachel spoke with the Child Life Worker, and she gave us a game plan. Rachel had me download some audio books on Kevin's Ipod shuffle. In a hurry I did this Wednesday night before my early Thursday morning flight (got about 3 hours of sleep). Long story short (I know, too late) Kevin did it!! He stalled at first, but once they got him to lay still, he was motionless the entire session. This being the longer session with X-rays, we were all confident that Kevin would be just fine for futher sessions. Friday he listened to Horton Hears a who on his I-pod; today it was the first few chapters of Charlottes Web. The technicians walked out with him after treatment today, and said he did marvelous. We're all very proud of Kevin. This means much more stability with his schedule, and affords him much more time for nourishment. His appetite seems better as well, without the sedation.

We all had a nice Easter. Mike and Scotty came down on Friday. All three boys got all kinds of Easter gifts, both from the Easter Bunny and the R.M.H. Scotty received Mario Cart for his Game Boy. Kevin received a Zoo game for his Nintendo DS. He's actually playing it right now, as we sit here between appointments in the cafeteria.

Kevin's received all kinds of cards and pictures from kids in his class room. He's read each and every card and looked at every picture. There are some artist in his room! Also, he received cards from a Second grade classroom from Commerce Elementary School. One of the parents use to have children that had his current teacher a few years ago. At any rate, they put together a care package, and the kids made some great cards and pictures. It's the highlight of Kevin's day when he gets mail or a package. We all appreciate the effort people make to let Kevin know they are thinking of him.

That's all for now. I'll post more updates through the week.

Sedation and Kevin

Kevin's hair is starting to come out from the radiation. He is a good sport and doesn't seem too concerned about it. He doesn't seem to be losing as much energy as some of the other kids and we think that his throwing up is mostly caused from the sedation drugs. We are hoping he can do the tumor boost radiation without the sedation today. Say a prayer that he can stay still and they don't kick him back to sedation!!! The doctors are pretty negative about him being able to be still for it but I see plenty of kids his age doing it and wish they would be more positive with him.


Rachel

Aunt Kelly & Graceland

Kevin's and Jake's Aunt Kelly came to help for a few days. I really appreciated the extra hands. It was nice to have someone to talk to during the long waits for radiation. She was a big help with Jake. I was able to go back when they have to sedate Kevin and was actually able to spend time with him. I know Kevin & Jake enjoyed having her around too.

Monday was a good day after radiation so we decided to try to do a typically touristy thing while we could (before we have to be careful about going out in public when chemo starts). So we went to Graceland. Kevin was a real sport because he didn't want to go at first, but then he was the one who wanted to stick around toward the end of the tour and listen to more 'stories' about Elvis's life.

Jake started to get up on all fours and rock back and forth this weekend, so we all know crawling isn't far away. He can kind of do the army crawl right now and is rolling all over the place when I set him down. It is kind of weird to think by the time we leave St. Judes he may be walking!

Rachel

Pictures of Family around St. Judes

Finally got an USB connection for the camera. Here are some pictures.

Kevins Last Day at School

http://picasaweb.google.com/dutcheshen/KevinSVisitToSchool

Here are pictures Kevin's Aunt Laura took at school before Kevin left for St. Judes

A Decade of Children’s Environmental Health Research

I found this interesting. I am very curious as to what made Kevin suseptable to cancer. Though this does not give a clear answer I found it a worthwhile read.

Decade of Children’s Environmental Health Research - EPA

I also changed the setting so you do not have to be a registered user to leave a comment. We will see how it goes. If we get spammers (people soliciting for business) I may have to change it back.

Rachel

Fundraisers

I feel a bit odd approaching this discussion but I guess it is better to come from me than someone else. As most of you can probable imagine cancer isn't just a horrible disease with a horrible treatment plan, it also is financially draining on the family. We are facing huge travel costs, loss of one income, unpaid leave, private tutoring for Kevin and additional child care costs we would have not incurred otherwise. We really appreciate all who have been generous already.

Some of our friends and coworkers have put together some fundraisers to help us raise the money needed so none of us have to sell our homes in this horrible economy due to this evil disease. Mike has set up a trust fund for expenses related to Kevin's medical care, this includes family (this includes Eric, Mike, Scotty, Jake and me) travel and hotel expenses to be with him. If you are interested in contributing to Kevin's trust fund please make checks out to The Kevin Saarela Cancer Fund. You can contact Bonnie Gammerath at 248-953-9682 or Mike at michigan_herrs at yahoo.com for more information.

Here are the fundraisers I am aware of:

Big Boys restaurant in Walled Lake will be hosting a fundraiser on Thursday April 3rd. I will post more information as I get it. Bonnie Gammerath can be contacted at 248-953-9682 or via email tfg at provide.net Please put Kevin Saarela Cancer Fundraiser in the title if you email her.


Bryant Bureau/Snelling Staffing Services (Eric's employer)
Bowling Fundraiser Event
Sunday - April 27, at 3:00 – check-in is from 2:00 – 2:30
$20.00 per person* includes: 3 games of bowling (9 pin no tap), shoes and 2 slices of pizza. There will also be: prizes, silent auction and 50/50 drawings.
Fountainview Lanes
34244 Groesbeck Hwy. (S. of 15 Mile).
Clinton Twp., MI 48035
registration forms are available through (or have questions please contact): Sue at snelling-jobs.com or Gail at bryantbureau.net or you can call (586) 772-6452, ask for Judy.

Thank you again to you if you have already helped out. We really appreciate the generosity, the prayers and thoughtfulness.

Rachel

Bingo Night

Tonight was Bingo night at the Ronald McDonald House in Memphis. Kevin won twice and brought back a game called Ants in the Pants and a Spiderman toy. Kevin is starting to eat a little but will only eat Chef Boy R Dee and Hagendas Ice Cream. The Chef Boy R Dee makes me cringe every time he eats it. I know it isn't good for him, but a calorie is a calorie. He is like a pregnant woman, his tastes are changing and he isn't sure what he is going to like one moment to the next.
Kevin is starting to have some of the side affects from radiation, but it is manageable right now. Jake seems to have some sort of bug and I am trying to get a doctor for him, but our insurance doesn't cover more than an emergency room. They have these social workers who are suppose to help with these types of problems, but I was told today that I really should have someone here helping me with the boys. I haven't been more offended in a long time. Like any of us have a choice; or I should choose one child over the other?!? Like I am not accepting help! This is a horrible thing no one ever expects to happen. Yes, I do see whole families here and I am not sure how they do it. There are women here with one child who has a mother or mother in-law helping them. That isn't happening here. It is no one's fault. It is just the situation. I have to deal with it, why can't they? Why does she have to insinuate I choose this situation? I am only trying to get the best care I can for my very sick child. No mother should have to choose one child over the other. Hopefully I am just being overly sensitive because I just want to give her a dirty look for being an idiot.

The Weekend in Review

Eric arrived late Thursday night. So Friday he took Kevin to his radiation appointment and I got to go grocery shopping with Jake. A snow storm hit Memphis Friday afternoon. Eric made dinner of tacos for us Friday evening. Kevin ate 2 whole soft shell tacos!!! Friday evening Mike and Scotty arrived. It was nice to have everyone here. A older brother of a patient came from Georgia to visit. His name is Chandler and Kevin and him hit it off right away. Chandler is exactly a year and a day older than Kevin. They thought that was pretty neat. Scotty of course was included and they ran around and played like normal boys. The only time I noticed that Kevin was the sick one was when they went out to play basketball. Normally Kevin has enough engery to keep up but he played for less than 5 mintues and then sat out the rest of the time Scotty and Chandler played basketball.

We also took the trolley to the Peabody Center and went to Jillians for a family night out Saturday night. Kevin was so worried about missing our stop he forgot to enjoy the short Trolley ride.

Overall it was a nice weekend. I have missed Scotty and Mike alot. I think Kevin has missed having his brother around the most. Scotty and Kev are pretty close as far as brothers go.

Hope you all enjoyed your weekend. I still have no USB to connect the camera to the laptop. Here are some pictures from my cell phone. Sorry about the quality. Most of these pictures are from our first week here. This past Friday marked week 2 for us.

Yesterdays raditation

Yesterdays radiation was in the early am. They were putting Kevin to sleep by 9:15 am and after he started to wake up we made sure to give him crackers and water right away. He didn't get sick this time but he really is having trouble getting his appetite back. I got him a milkshake from Chic-fila (those are the best) and added Whey protein to it. He drank about ½ of it. He had about 5-10 crackers, ¼ a piece of pizza and lots of water.

His radiation is at noon again today. I tried waking him up at 4 am (the last time he can eat) this morning and was only able to get him to eat about 3 bits of pb & marshmallow. UGHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Meanwhile, Back in Michigan ....

Scotty and I are flying down to Memphis this weekend to get the family back together. This video will give you an idea of the craziness that occurs here in Michigan every night before bedtime.

Mike

And the verdict is still out....

Radiation seemed to go okay. While I was in the waiting room waiting for Kevin yesterday I met a kid who hasn’t lost his hair from chemo & radiation. Pretty amazing. He looks great. Most kids lose their eye brows and eye lashes along with there hair and he had it all. So I am going to just keep praying that God allows Kevin to keep all of his hair everywhere and keeps him very healthy through the whole thing.

Kevin did get incredible sick last night but I am not sure if it is because he had to go so long without eating yesterday and when he did eat he was trying to be energetic. (I think he is losing it mentally because he has been away from his friends for so long). Kevin had to have his port accessed yesterday and last week when they accessed it he kicked the nurse several times and yelled and screamed for through the whole thing (at the top of his lungs that we were killing him). So this time I used bribery. Yes, I have been reduced to bribing my son. I promised him a $20 pack of Pokomon cards if he was good to the nurse. In the end he did do better than last week but he still made the nurse ask him over 10 times to turn around. And he did tell us several times that we were trying to kill him but at least he wasn’t screaming. So we aren’t exactly there yet but he did improve. So I told him at the end of it he earned a $10 pack because he did improve but there was still room for improvement. (The nurses all agreed with me on this one). He was not happy at first but then through out the day he figured he still had $8 left from the gift card EPD got him so he was good. As soon as he came to yesterday after radiation he wanted to go to Target and get his Pokomon cards. I tried warning him he needed to go lay down back at our room but he insisted. Sure enough he started feeling quesy at Target and then threw up in the car on the way back. Moms know nothing apparently!!!!! He did continue to throw up a couple more times after we FINALLY made it back but I think he did manage to eat ½ a hamburger and keep it down. Another mom here gave me some crackers and he ate about 10 of them. But that is all he ate yesterday. So I am still not sure about what caused this, we have another around this morning at 8:45 am so we will see...........

Radiation Starts Today @ noon (CT)

Kevin has his first radiation treatment today at noon. He will have a total of 33 treatments over the next 6 weeks. The first two weeks are the whole brain and spine and then after that it is just the tumor bed, aka where the tumor used to be. I have to admit I am so frightened of what the side affects can be. I am worried he will no longer be our quick witted Kevin. I worry about the growth hormones he may have to take after. And I hear his hair is going to thin. Some kids get sick from the radiation some just get tired. UGHH!!! Please pray that God protects his organs, his brain and just kills the cancer. In order to emotionally accept this treatment I have had to accept that if we don’t do this the cancer can come back and give his a slow painful death. It is so difficult to subject my son to a treatment that has such horrible side affects. Kevin also has had a decrease in appetite the last week. It is a battle to get him to eat. He really needs to keep working on gaining weight. Most kids lose about 10 pounds and Kevin is so skinny he can’t afford to lose 10 pounds. Hopefully God will spare him from the nausea and vomiting most people experience.

Yesterday Kevin was so energetic. He misses school and his peers so much. He started the tutoring classes yesterday and was disappointed that there would be no other kids with him, but he was happy to do some reading work. Last night was also Bingo night. Some kids from Central Michigan University have taken an alternative spring break and they are spending the week here volunteering at the Ronald McDonald house. They put on the Bingo game and each kid won at least one prize. It was a nice social event for Kevin. He won 3 prizes; 2 games and a bionicle.

Kevin loves having Jake here with him. He loves to introduce him to people as his little brother and last night Kevin was enjoying making Jake laugh for about an hour. Sometimes when Kevin is worrying about the treatments and what is going on he just likes to try to hold Jake. It somehow comforts him I guess the same way holding a baby comforts adults too.

I will let you know how radiation goes as soon as I have a chance. I understand we won’t really know what Kevin’s reaction will be until the evening. Please keep praying for him.

A post about Jake

I know most of you check in about Kevin, but for our extended family that checks to see what is happening with our little family I wanted to let you know what Jake started doing this past week. He started clapping!! He will clap at people as the walk by us when we are waiting for doctors and such in the waiting rooms.

I hope to get a movie of it & up loaded. But, also, I don't have a USB connector to download the movies and pictures yet either (the joys of a short notice move, not much time to plan what I really need). I maybe waiting for Mike & Scotty's next trip out here before I get one.

Jake also has hit another growing spurt. I brought all 3-6 month clothes and he is working on growing out of them within a week. He eats like we are starving him. He will easily go through two jars of baby food that is always mixed with rice cereal or oatmeal. Yesterday I had a baked potato for lunch; well actually, Jake had the baked potato. He almost finished the whole inside of the baked potato!