Wednesday, April 30, 2008

Kevin's Bowling Fund-raiser

(written by Eric Saarela)

The bowling fund raiser on Sunday was an enormous success!! Thank you to everybody who supported Kevin by contributing to the event. Kevin had a great time, and as many of you saw was full of energy. He enjoyed picking out the winning tickets for the raffles...I think he felt like it gave him some power or control, which is something he's sacraficed with his battle with medulloblastoma. Not only did we all have an exceptional time, but the money that was brought in was astonishing. Personally, I've always been a bit private if not reclusive, but the way several communities of people, some of which i've never met, have opened their hearts has been an incredible growth experience for me. Ron, Sue, Judy and the rest of the crew put forth so much effort. I want to give an extra special thanks to Judy Paczek. I had my speach all planned out, with a special thanks to her included, but speaking in front of 300 people turned out to be a daunting task, which unfortunately lead to me forgetting to publicly thank Judy or Kevin's mother Rachel (both of whom were a rehearsed part of the thank you). So, Judy your work will forever be appreciated. You're one of the most kind and selfless people I've come to know. I also planned on thanking Rachel for the enormous sacrafices she's made in being a constant presense for Kevin down in Memphis TN. None of this could have worked without your sacrafice and committment.

One of the most enjoyable parts of the bowling event was re-connecting with so many dozens of friends and ex-coworkers. As we get older we usually only keep a handfull of friends or so in our communicative circle. However, after seeing so many people I care about again, I regret not having kept better contact with so many of the extraordinary people I've been close to. Thank you all for attending.

Kevin and I will be returning in just shy of two weeks. Until then the objective is to eat as much as possible, so he can start his chemo off at a healthy weight. He's been with Rachel since the fundraiser on Sunday, so I'm eager to see how his appetite is over the next four days with me. Like Rachel, I too have so much trepadation with our return to Memphis. It's been so magical having Kevin home these past 2 weeks. Returning back to the world of MRI's, Spinal Taps, labs (blood drawn), and finally starting 5/23 chemotherapy. It has occurred to me that Kevin's current health is probably the best we're going to see him for quite some time. On the positive side though, I'm very optimistic that at the end of the day Kevin is going to make a grand recovery. He has the heart, courage, resiliancy, and stubborness so see this journey through. I look at him with great awe sometimes. His strength and courage makes it that much easier for me to be strong, and I suppose it's a full circle as the stronger I am the better for Kevin. I've been researching with great fervor, the upcoming chemotherapy process. I try to tempor my optimism with the reality that the treatment will be far from easy for all of us, especially kevin. I really don't think he has a grasp how tough high dosage chemo is going to be on his body. There's a light at the end of the tunnel, but we're only 1/4 of the way through the tunnel.

Everybody's support has been such an enormous booster to our attitude and optimism. Nearly 300 people in one bowling alley was an incredible accomplishment, and will forever be appreciated. It also served somewhat as a going away party for Kevin, Rachel and I. I plan on spending all of Kevin's inpatient time in Memphis with him at the hospital. At any rate, thanks again to everybody and we'll try to keep everybody posted for the rest of the journey.


Tuesday, April 29, 2008

2 weeks - thank you Eric for correcting me

Kevin & Eric will return to St. Jude Tuesday May 13th. So we have just a little under 2 weeks of our break left. I must admit to being completely scared of this next step.

When we go back Kevin will have MRI's to see if the cancer has metasized again, or if he gotten a tumor anywhere else. Please pray that there is no more tumors ever for Kevin.

Earlier this evening as I was listening to Kevin and Scotty get ready for bed, I started to get this sinking feeling, as much as I don't want it to be true I know there is a risk that Kevin may not make it through this. I can't help but worry what if this treatment doesn't work? And I am scared of how sick the chemo is going to make Kevin and I can't help but feeling this overwhemling sadness about how this is changing his body and causing other issues we will have to deal with once we are through this treatment. I am edggy about the upcoming MRI's telling me something I don't want to hear.

While researching medulloblastoma I found a little boy Mo who was dx in 2003 with medulloblastoma. The beginning of his story sounds so much like Kevin's, I am praying that for our sake it turns out different. I said a little pray for his parents. For a moment this evening I think I felt the pain they must feel. I am reminded that I am very grateful for today; that me and all three of my boys got to enjoy a 1/2 day off from school together with friends at Jungle Java.

Hopefully this is just a moment I am having. Kevin has been a little bit sleeper than normal in the evening lately & a little bit moodier but he is still going strong all day.

Take Care,

Wednesday, April 23, 2008

NY Times article & Medullo Treatment Intro

NY Times Article
My Daughters Are Fine, but I’ll Never Be the Same
Published: April 8, 2008
A child’s close call with death reverberates through the rest of a parent’s life.

Below is some information I gleened from St. Judes website. It is a very high level intro overview of treatment options for Kevin's type of cancer. I will write up a more detail explaination of the protocol (clinical trial) Kevin is apart of next week.(
Treatment Option Overview

Key Points for This Section

There are different types of treatment for children with childhood medulloblastoma.
Children with medulloblastoma should have their treatment planned by a team of doctors with expertise in treating childhood brain tumors.
Some cancer treatments cause side effects months or years after treatment has ended.
Four types of standard treatment are used:
Radiation therapy
Cerebrospinal fluid diversion
New types of treatment are being tested in clinical trials. These include the following:
High-dose chemotherapy with stem cell transplant
There are different types of treatment for children with childhood medulloblastoma.
Different types of treatment are available for children with childhood medulloblastoma. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.
Because cancer in children is rare, taking part in a clinical trial should be considered. Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI Web site. Choosing the most appropriate cancer treatment is a decision that ideally involves the patient, family, and health care team.
Children with medulloblastoma should have their treatment planned by a team of doctors with expertise in treating childhood brain tumors.
Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with cancer. The pediatric oncologist works with other pediatric doctors who are experts in treating children with brain tumors and who specialize in certain areas of medicine. These may include the following specialists:
Rehabilitation specialist.
Radiation oncologist.
Medical oncologist.
Some cancer treatments cause side effects months or years after treatment has ended.
Some cancer treatments cause side effects that continue or appear months or years after cancer treatment has ended. These are called late effects. Late effects of cancer treatment may include:
Physical problems.
Changes in mood, feelings, thinking, learning or memory.
Second cancers (new types of cancer).
Some late effects may be treated or controlled. It is important to talk with your child's doctors about the possible late effects caused by some treatments. (See the PDQ summary on Late Effects of Treatment for Childhood Cancer for more information).
Four types of standard treatment are used:
Surgery is used to diagnose and treat childhood medulloblastoma as described in the General Information section of this summary.
Radiation therapy
Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated.
Radiation therapy to the brain can affect growth and development in young children. For this reason, ways of giving radiation therapy that limit damage to healthy brain tissue are being studied.
Conformal radiation therapy uses a computer to create a 3-D picture of the tumor. The radiation beams are shaped to fit the tumor.
Stereotactic radiation therapy uses a head frame to aim radiation at the tumor only.
Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the spinal column, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated.
Because radiation therapy can affect growth and brain development in young children, clinical trials are studying ways of using chemotherapy to delay or reduce the need for radiation therapy.
Cerebrospinal fluid diversion
Cerebrospinal fluid diversion is a method used to drain fluid that has built up around the brain and spinal cord. A shunt (long, thin tube) is placed in a ventricle (hollow space) of the brain and threaded under the skin to another part of the body, usually the abdomen. The shunt carries excess fluid away from the brain so it may be absorbed elsewhere in the body.
New types of treatment are being tested in clinical trials. These include the following:
High-dose chemotherapy with stem cell transplant
High-dose chemotherapy with bone marrow or stem cell transplant is a way of giving high doses of chemotherapy and replacing blood-forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body’s blood cells.

Tuesday, April 22, 2008

Kevin's weekend at Dad's house

(written by Eric Saarela) First off the Hall Party fund raiser on Friday night was such a great time! I was able to see old friends that I really haven't had a chance to see in quite a long time. Thank you once again, Kristi, April and Denise.....We had a terrific time, as did everbody else.

Our family had a small gathering on Saturday, which served the duel purpose of a Birthday party for my dad (he wanted to wait until Kevin was home) and a welcome home for Kevin. Rachel, Scotty, Mike, and Jacob were there as well. We had a pretty simple but fun time eating pizza, opening gifts, then finally playing Kevin's new Nintendo Wii. Kevin's strength and stamina has been excellent. We played the Wii off and on all weekend, which involves a lot of movement on the part of the participants.....I think I wore out quicker then Kevin. After the party we all went to Scotty's soccer game. It was a lot of fun watching Scotty run around after the ball. He's still not 100% sure what to do once he gets close to the ball, but that will come in time, as he gains some more confidence. Kevin said he wants to help Scotty improve his game. After the game Scotty came over, and the 3 of us played on the Wii throught the afternoon and evening. Scotty was quite the boxer, and Kevin is a good bowler and can beat me in Tennis. Kevin was so happy to sleep in his bed again (well actually he slept in daddy's bed, but it was still nice). He's really using this period of time to get some normalcy back in his life. I can't help but admire his strength and determination. We also went to target on Saturday to get a second controller for his Wii. Kevin had a moment while we were eating that was a bit emotional and an opportunity for both of us to learn. Kevin's very proud and a bit stubborn regarding wearing a hat (he wanted no part in it). He figures people will have to accept him for what he is. Our only rule is he must wear a hat outside because of the sun. Any way, this works in Memphis when people are accustomed to seeing kids undergoing treatment. In Commerce Twp though it's still a bit of a shock. We had a couple of incidences in Target where people approached him directly. They were trying to be nice, but after the second episode while we were trying to eat, Kevin looked at me straight in the eyes and eloquently said "daddy, I think I want to start wearing a hat". He went on to explain that although he's proud of who he is, he wants to be treated like a normal kid. He doesn't want people making such a fuss (much less strangers) whenever he's out in public. He just wants to be normal, especially during this period of time back home before the chemo. It was a learning experience and quite the epiphany for a seven year old boy.

Sunday was a day Kevin's been awaiting for quite some time; he got to play with his best friend Kyle. Kyle had a Detroit Pistons hat and Jersey for Kevin. Kyle actually won the opportunity to be a Piston's junior ball boy, for 1 game. Kevin was touched that Kyle thought of Kevin while having the time of his life at the game. At any rate, Kevin and Kyle played and played and played from 10:45 a.m. until 7 p.m. on sunday. The played Wii, colored, board games, more wii, and played with more toys. Kevin had such a good time with Kyle, and it was hear-warming watching the smiles on both of their faces. Kevin was on his best behavior, and both of them even obediently cleaned up their multiple messes when it was time for Kevin and I to walk Kyle home. Afterward he did his homework and watched the pistons game with daddy. this was not as much fun as they lost to the inferior 76ers.

From what I hear Kevin's had a great time at school as well. He really likes his teacher Mrs. Stout (as do Rachel, Mike and I). He's felt at home in his class room, and it seems with his home bound schooling at St. Jude, he has not fallen much behind. He wants to soak in every day back home, and school is a big part of this. He had one nasuea incident his first day back, but has been good since then (he didn't take his medicine that day). Wednesday is Kevin's cub scout pack meeting. They're awarding rank badges, and the troup leader indicated kevin will be awarded his Wolf badge despite missing the last few months with his illness. Kevin's excited to see all his friends at Cub Scouts as well.

Sorry for writting so much, but I don't have the opportunity to write on this site very often, and I had a lot of updates to share with everybody. Everybody has been so terrific, and i can't thank you all enough!

Sunday, April 20, 2008

Silly String Wars

Friday we ended up having a very impromptu get together of neighbors and kids. The kids had silly string wars, water balloon throwing, pizza and we all just enjoyed each others company. One thing Kevin's cancer has really driven home to me is that everyday is a blessing and there is no promise of a tomorrow for any of us. I am trying really hard to smile more, enjoy the days God has given me and my family together, enjoy our friends, new and old. I feel very blessed that so many have reached out to us in our time of need. I know it has lifted Kevin's spirits, it has lifted my spirits when we really needed it. I could not imagine, nor do I want to, going through this feeling all alone. All of the prayers, generosity, and well wishes defiantly help to make all of us stronger, keeping us from breaking through this terrible illness. Please know that your actions matter and we really do appreciate them. I know first hand all of the prayers make a big difference. And not to say that there aren't days in Memphis when I don't feel like I am in hell. There are plenty of days when Jake is fussy, Kevin is jumping all around (or bitter & mad at me)and I am trying to understand what in the heck the doctor is trying to tell me about Kevin and his treatment through all of the noise. Or when Kevin feels ill and Jake, once again is not going to cooperate and help me out by being less demanding; Or when I miss Scotty and Mike terribly (which was a lot toward the last couple of weeks). Those are the times I feel like I am in hell. But there are the times when Kevin has to get up early to go to the hospital and he just doesn't want to get moving and I put Jake down on the bed next to him and Kevin just smiles, I can see how the bond between the two just brightens Kevins spirits. It is wonderful to see how much adding a brother means to Kevin and Scotty.

And there is something about Jake that makes me feel like our family is finally complete when we are all together, there isn't anything missing anymore, like the way I used to feel. Yes, it is a challenge and I am worried about how I am going to make it through chemo with both Jake and Kevin to take care of mostly on my own. But I wish Scotty could be there with us too and I keep trying to figure out how to get it so I can have all of my boys together through out this upcoming summer despite Kevin’s chemo and it being totally crazy and try to take care of all 3 on my own. I miss him so much and we aren’t complete without each other.

I know some people have asked about what Kevin’s chemo will be like. I will put the details of his upcoming treatment up in the upcoming weeks.

As for right now, Kevin seems to be handling the after affects of radiation fairly well. We just need him to eat lots of healthy food right now to build up his weight and get his body as healthy as can be for chemo. He spent this weekend surrounded by friends and family. Scotty is happy to have his brothers and mom home. Auntie Bonnie is doing a great job and we really appreciate how her kids have included Scotty as one of them. I really appreciate everyone who has helped out with Scotty over the last couple of months. Thank you so much for helping us try to keep it as normal as possible, (of course that is all relative when your mom and brothers are missing from daily life) but it could have been much worse if he would have had to change schools. Big THANK YOU to all who have helped and continue to help. You are my angels.

Thanks for checking on us! Take care!

Saturday, April 19, 2008

Back to School


Kevin went back to school yesterday. He had a good day. He loved being back!
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Friday, April 18, 2008

Finally Internet Access!!

I could not get the computer to connect to the network for almost a week back in Memphis but now that we are home I am up & running (thank you hubby!).

We are now back in Michigan. Kevin finished radiation and is doing great even though he lost 10 lbs. BTW Jimmy from the Radiation sedation team - send us an email, we would like to keep in touch! Radiation gave Kevin a T-shirt & balloons to celebration finishing this part of treatment.

This is Kevin with Amy from Radiation Child Life. She ROCKS! She realy helped Kevin do radiation without sedation. We are very grateful to her & the rest of the team that encouraged Kevin when he wasn't sure if he could do it.

Wednesday, April 9, 2008

Inspired by Oprah’s BIG GIVE theme

Inspired by Oprah’s BIG GIVE theme, Bryant Bureau and Snelling Staffing Services of Roseville have formed three teams and are organizing three different events coming up in April in support of Kevin and his family. Though the teams are all working toward the same goal, there is a friendly competition going on among them to see which team can raise the most money! COME ON OUT AND SHOW YOUR SUPPORT BY ATTENDING ONE OR ALL OF THE EVENTS!!

THE FIRST EVENT is THIS weekend in Royal Oak. A portion of the proceeds at
Hi-Tops Bar and Grille (kitty corner from the zoo on Woodward) will be donated to
The Kevin Saarela Cancer Fund on April 12th from 6:30 to 9:30 p.m. Raffles and drawings will also be going on so come on out and show your support.
Sponsored by Turkey Club.

NEXT is the HALL PARTY at Knights of Columbus Hall on 12 Mile Road in
Roseville on April 18th at 7:00 pm featuring a disc jockey, raffles and auction items. This also promises to be a great time! Please pre-register. Call the office and ask for Judy at (586) 772-6452 or email for further details.
Sponsored by Eric's Angels!

OUR LAST BRYANT BUREAU AND SNELLING STAFF SERVICES SPONSERED EVENT will be held at Fountainview Lanes, April 27th, on Groesbeck S. of 15 Mile Road in Clinton Twp. It is three games of 9 pin no-tap bowling, two slices of pizza, raffles, 50-50 drawings, auction items and it promises to be lots of fun as Kevin and his family plan to attend! Kevin will be home for a break during thay time so come on out and say hi. You do not have to bowl to participate but there is plenty of room at this time for yourself and/or your team; up to 5 on a lane. Pre-registration is requested so contact Judy or Sue (above) for a registration form. Sponsored by Kevin's Krew!

-Sue Daiza

Sunday, April 6, 2008

Some Angels Get Their Wings & Family Visit for the Weekend

This past week was a sad one for the Ronald McDonald House. A couple of the kids here lost their battle with cancer. It wasn't anyone we were very close with here but still we had said hello and seen them around. It just doesn't seem right these little kids have to go through all of this. Eric had played some game with one of the dads who lost his son.

Kevin is now on an appetite stimulate. It seems to be helping him eat more but it is making him tired. Scotty, my mom, Eric's mom and sister (Aunt Laura) all came in for a visit. We went to the Children's Museum in town on Saturday. It was a lot of fun for the kids. Here are some pictures from our day out. I miss having Scotty around and I know he misses Kevin, Jake and me alot. It was very nice to see him and mom (& everyone) this weekend.

Saturday, April 5, 2008

Information about Brain Tumors

For those who would like to understand a little about brain tumor cancer & treatment this is a good, easy to read article that also describes warning signs. I think it is a good read for all parents of young children.

Pediatric Brain Tumors —Overall Review

!!!!!!!THANK YOU!!!!!!!

My mom has filled me in with how many people took the time to eat dinner and participate in the Big Boys fundraiser. I am very moved so many people would come out and support our family. And I am very grateful to my neighbors, friends, Mrs. Timlin & Mrs. Stout who helped make this happen (sorry if I am missing anyone!). Mike should be posting pictures from the event sometime this upcoming week. Thank you to all who waited in line to get seated, bought T-shirts and and bracelets. Enough was raised to help cover almost a whole month of the additional travel/living expenses we are facing!!! You all are amazing and certainly our children's angels. Please know we are very grateful for everything.


PS I also heard Friday was picture day at Glengary...a BIG THANK YOU to all the parents who had to contend with kids who wanted to wear their Kevin Hope T-shirts the next day.

Lynn - thank you for sending the pictures! It is all I have seen so far.

Wednesday, April 2, 2008


Kevin is now handling radiation wonderfully since we stoped sedating him. I feel pretty strongly that it was the sedation and lack of eating that was making him so sick. W are still working on getting his appitite back. But it is slowly coming back. The dietian wants him to gain 5-10 pounds before starting chemo. Kevin is having a total of 33 radiation treatments. Then we go home for 3 weeks and then come back here to start the chemo process. I have had a couple of meeting with Dr.'s and nurses to get ready for the chemo. I will write more about it once I finish the book they gave me to read.

Here are some pictures from the past week.