NY Times article & Medullo Treatment Intro

NY Times Article
My Daughters Are Fine, but I’ll Never Be the Same
By HARRIET BROWN
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.(http://www.cancer.gov/cancertopics/pdq/treatment/childmedulloblastoma/Patient/page4)
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:
Surgery
Radiation therapy
Chemotherapy
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:
Neurosurgeon.
Neurologist.
Neuropathologist.
Neuroradiologist.
Rehabilitation specialist.
Radiation oncologist.
Medical oncologist.
Endocrinologist.
Psychologist.
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
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
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.

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!

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!
Rachel

Back to School

 
 


Kevin went back to school yesterday. He had a good day. He loved being back!

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.

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 Sue@bryantbureau.net 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

Early findings on air pollution’s effects on brain cause concern

'....fine particles like those found in diesel soot can switch on the tumor genes that many people inherit, jump-starting the disease process that results in brain tumors.' click link to read article

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.

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
TADANORI TOMITA, MD

!!!!!!!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.

Rachel

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.

Radiation

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.

Rachel

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!

Kevin's Good Day

Kevin had a great day today. He was walking upright, not all hunched over. He is working with an OT and a PT (therapists) 2-3 times a week. He actually wrestled with his dad yesterday. He hasn't done that in over a month. I am so appreciative that he is getting one normal weekend before the radation starts. There is another little girl here with the same thing as Kevin & she is a couple of weeks ahead of him in treatment & she is having a really rough time. Her name is Heather & I am sure her mom would appreciate any extra prayers.

All of Kevin’s tests came back negative so that means they have classified him as a classic average risk Medulloblastoma. So the plan is to give him standard treatment. It is the treatment part that is very frightening (after the intial diagnosis). If you are praying for him, please pray that Kevin responds well to treatment, that the radiation and chemo don't damage his body but only rid his body from any cancer so there is no relapse; I would really appreciate it.

Thank you,
Rachel

Address for Kevin

Here is the address if you want to send letters or packages to Kevin.
This address will be good for the next 6 weeks (until April 14).
================================================
Ronald McDonald House
Kevin Saarela
Room 22
535 Alabama Avenue
Memphis, TN 38105
============================================
Currently Rachel, Eric, and Jake are staying with Kevin. They moved into the Ronald McDonald house on Tuesday (Feb. 26), filling the Taurus X with so much stuff that there wasn't room for Jake and the stroller! Rachel and Jake had to take the shuttle bus over the the Ronald McDonald house separately. (It's not on the hospital campus, maybe 1/2 mile away.) That same day Scotty and I drove back to Michigan in 12 1/2 hours through rain and snow. Scotty is a great little traveler.

Kevin is undergoing a repeat of all the tests he had done in Detroit. New MRI scans, another lumbar puncture (spinal tap), and other things. The doctors here have some equipment that is more advanced, and they just want to make sure nothing gets overlooked. We are encouraged because it seems that Kevin's primary care docter here at St. Jude (Dr. Gajjar) knows the neurosurgeon who removed Kevin's brain tumor in Detroit (Dr. Sood). That should facilitate communication between the two hospitals.

I am very impressed with St. Jude's. The facility is amazing, especially with the addition of the new Chili's Care Center (where Kevin has been spending a lot of time). The people here go to great lengths to make Kevin and the rest of the family feel comfortable. The doctors dedicate long sessions to answer our questions. The radiation oncologist (Dr. Pai) even pulled up Kevin's MRI scans from Detroit and explained what they show and what they are missing (thus the need for supplemental MRI scans now that we're in Memphis).

So a radiation plan has been developed. They will radiate Kevin's entire brain and spine for two weeks starting next week (March 3). Then they will localize the radiation specifically on the tumor site for the remaining 4 weeks. All told, there will be 33 days of radiation therapy with a schedule of 5 days on, 2 days off. Each treatment will last only 15 to 45 minutes (longer for full brain and spine, shorter for just the tumor bed). The only immediate side effects will be fatigue and hair loss in the small area where the photon beam enters his head. The longer-term side effects will be cataracts in his eyes, high frequency hearing loss, reduced output from his pituitary gland, and reduction in overall intelligence. Maybe some other things that I can't remember. All pretty bad stuff.

The immediate problem we are having has to do with Kevin's port. The port was put in the middle of his chest (under the skin) and it runs right into a main artery then into the heart. It's there mainly to deliver chemo drugs, but can also be used for drawing blood. The problem is that this port is rather large and it sticks out of his chest. For the radiation treatment, Kevin is supposed to lie flat on his stomach. But it hurts to lie on the port. They tried putting a donut-shaped pillow around the port to ease the pain, but it's not working. Kevin is way too tense and bent over from fear of pain. If he even moves 1 millimeter during treatment, the radiation will not go where desired and the treatment will be compromised (not to mention the radiation might go someplace where it will do damage). So he will have to be sedated during the radiation treatments. This is not desireable, because he can't eat for 4 hours before the procedure, then he'll feel nauseous for hours after the procedure. Rachel, Eric, and the nurses will continue to work with Kevin to try to make him comfortable on his stomach, but we are a long way from that right now.

Mike

Memphis

The family is all here in Memphis. Mike, Eric and Scotty all arrived LATE LATE Friday. Technically, Saturday morning around 3 am EST or 2am CT (local time). It worked out to be about a 13 hour drive, and no one got spared from ucky weather. Yup, I don't thinking anyone will be really up for that drive just for short weekends.

I am still working on living arrangements. There was a big college basketball game in town this past weekend (something about Tigers and I am not sure of the other Tennessee team) but none the less there were no hotels available within a reasonable radius. By the grace of God, when my parents, Kevin, Jake and I first got here Thursday night we had to check in at St. Jude. While I was filling out all of the paperwork another couple with a baby came in to check in. The mom started talking to us about Habitat for Hope. Her name was Rachel, her husband's name was Mike - what are the odds of that? So Habitat for Hope has put Mike, Scotty, Jake & I up in their guest rooms of their personal house. They are a Christian outreach that is run by a family. You can read their story via the link. Eric and Kevin have been staying at the hotel run by St. Jude’s.


We all (Eric, Mike, Kevin, Scotty, Jake, and I) went to church with our host family. Kevin's class wrote down prayer requests. He wouldn't let anyone read his. His Sunday school teacher seemed very nice. Scotty learned about living water.

I need to make some dinner for these troupes. Tomorrow is a long day at St. Judes. Dr. Gajar wants to meet with all parents. We start at 8 am have an hour lunch and end at 4 pm. Hopefully the kids make it!!!!!!

Journey to St. Jude...

Hi Everyone!

Rachel, Kevin, Jake, Grandma and Grandpa Skousen joined to St. Jude this week. They left Wednesday evening and stayed with family in Ohio. Thursday they were on the road just in time to get stuck in the middle of an ice storm in KY.
They finally arrived at St. Jude at 23:30 Thursday evening. They would have been there a little bit sooner except they had a hard time finding it. From what I was told... They were able to see the building from the highway but unable to find the street - gotta love MapQuest... The directions had them looking for the wrong street...

Today Kevin had a MRI but not just any MRI... During this MRI, Kevin was shown pictures while the Doctors mapped to see what parts of his brain were activity. Sorry I forgot what the technical name of this MRI is but... that is why I'm not a doctor :-) Unfortunately they were not able to finish the MRI because as Kevin said the MRI 'blew up'... There was a mechanical failure with the MRI during the testing.... so they will have to repeat it...

In the meantime, Rach is trying to make sleeping arrangements for the family. St. Jude only allows for 4 family members but they have five. For whatever reasons, Jake is counted as if he was an adult... someone please explain that one to me??? Because I'm clueless as to how a 5 month old can be counted as if he was an adult... St. Jude is allowing them all to stay for the week but Rachel is trying to find something for the rest of their time there.

Rachel said that she would hopefully have Internet access soon. In the meantime, I'll be updating the blog as I receive information...

Please continue to keep Kevin in your prayers :-) and thank you for all the support and help. It means a lot to all of us.

Love,
Aunt Becca

Whirlwind

I only have 5 minutes to type up this update.

- Kevin’s spinal MRI came back clear, so it looks like no tumors on his spine.

- St. Jude’s called today and invited us to come down Thursday!!!!

It has been crazy today. It is bittersweet. It looks like Kevin, Jake and I will be gone for 7 weeks, come back for 3 weeks and then be gone for another 4 months. I am going to miss Mike and Scotty so much; hopefully they can make it down every weekend. I can’t imagine not having those two around all the time. I think Eric will be there are much as he can too. I haven’t even thought about how we are going to pay for all of the travel expenses and where to stay. St. Judes will cover up to 4 people including the patient, and we are easily over that on the weekends, but I am hoping (praying) when I get down there something will all work out. I can’t even think straight at this moment. We are meeting a bunch of people at Zap Zone at 7 pm tonight as a little farewell for Kevin. If you read this before 7 pm you are more than welcome to join us. It is $12 a person. It is the one in Farmington on Grand River west of Orchard Lake(northwest corner, near Big Lots).

Lumbar Puncture tomorrow (aka LP or spinal tap)

Tomorrow we have to be at CHM bright & earlier (7:30am) for Kevin’s spinal tap. This test will tell us if the cancer has spread to his CSF (?). I love it when dr.’s try to reassure me that everything will be fine, the test only carries a small risk….I understand, but I am still uneasy about it!!! Please say a prayer that this test won't harm Kevin and that he will be spared from the pain. I am really worried about this.

Hopefully tomorrow we will hear the results from Kevin’s spinal MRI too. Kevin got really sick from the sedation drugs they used on him Sunday. He couldn’t eat all day & when he could eat, he couldn’t keep it down! ;(

Scotty is trying to understand what is happening to his big brother. I can see he feels very overlooked right now and really wants my attention, or just to cuddle, when we are home. Today Scotty was a huge help as I had to take all of the kids with me as I gathered copies of Kevin’s medical records to ship to Tennessee. He carried a box in and helped Kevin get comfortable while they waited for me to make copies. BTW – Grammie & Pappy we also shipped out a box to you too.

Need a Prayer

My ped is working on getting slides of Kevin's tumor to St. Judes by this Wednesday. It has to be there by Wednesday in order for him to be considered for treatment there.

Sunday starts another week of getting poked for Kevin

Today Kevin has his Spinal MRI to see if there are any tumors on his spine. He will be put to sleep for the test because it takes 2 hours. Please pray that the test results are clear for the doctors to read and that they are negative for more cancer growth. Kevin’s lumbar puncture was suppose to be on Friday but I luckily learned on Thursday that they were hoping for an opening at 9:30am this past Friday, there wasn’t really actually an appointment. So it is now set for Tuesday. Hopefully this one is for real.

I am trying to pull Kevin’s medical records from CHM to get a couple of second opinions because as I like to say, its not like Kevin just has the flu. But for some odd reason CHM has not updated his file at all since Feb. 4th. So his last CT scan is missing, there is no operative report for his operation on Thursday Feb. 7th. Which is odd, because when I went to pull his records on Feb. 4th I was able to get his operation reports and everything else. I can see difficulty ahead.


I was really concerned and quite honestly upset with our pediatrician when Kevin was first admitted to the hospital. I felt that they weren’t interested in handling Kevin as a patient. I really felt that they had abandoned me to navigate all of this medical crisis alone. But the doctor who owns the practice has really recently step up and given me the most reassurance that it will be me, not any doctor, who will know what is best for my son. I really appreciate the Saturday afternoon phone calls she made to help me try to get Kevin’s records and talk about getting second opinions.

A couple of moms, from around the country, who’s children were also diagnosed with medullo have contacted me and are helping me understand the different treatment options and filling me in with their experience (and also a local friend who attended Medical school - thank you Abi!). It is helping me emotional get a grip and keep things moving forward for Kevin. As I have learned the hard way no one else will be a better advocate for Kevin but his own parents, and moms are good at becoming experts when their childs life is at stake. The more educated we are the better decisions we can make. Radiation is the scary thing because it can reduce a childs IQ as much as 25% but it is the only thing proven so far to kill off the cancer for good. If this cancer that has invaded Kevin’s body comes back, from what I understand, it will most certainly be lethal. Right now, hopefully we have a chance of saving him.

Happy Belated Valentines

Hope you and your loved ones had a good Valentines Day. Thank you for all your thoughts and prayers. We really appreciate it.

I Miss My In-laws

Last week Mike’s parents were here to help with the other two kids. Now that Kevin’s home, it feels like I have 2 infants and a preschooler. I love having him home, but it is very demanding. A neighbor has been a tremendous help and my MOPS groups has been great with sending meals which is helping make this all the more bearable. I think that is helping me not lose my mind.

70-80% Success Rate in about 15-20 Patients Per Year. That was the statistic I was given when I looked into CHM’s success rate with treating medulloblastoma. Sounds positive? Not if it is your child’s life. To me, that means they lost a little more than a couple of children with my son’s diagnosis. I don’t want my son to be on that end of the statistic. I want to know what I can do differently than the parents who lost their children to make sure my son makes it through this. I have read that girls seem to do better than boys through this. Hmmmm….my son is a boy. Okay, I can’t change that he is a boy (and wouldn’t), but still what can I do to make sure he survives this? I am searching for the answers to this.

Well the baby is up so I only have a few spare minutes left. Here are some pictures from when Kevin was in the hospital and the boys with the Webkinz and stuffed animals they got. Kevin & Scotty send out a BIG THAK YOU! to everyone

Finally Some Good News!

4 surgeries, 4 procedures (2 MRI’s, 1 CT scan and a bone marrow test) and we have our little Kevin home for a couple of weeks!! Kevin is tired & uncomfotable with the Broviac port in his chest and has spent the last two days curled up in the fetal position. He really worried me yesterday but the doctor has reassured me it takes 4-6 weeks for him to get used to his shunt and he probably is really feeling the pain since they stopped the morphine. We did get some good news today! Kevin’s bone marrow test came back negative so no cancer in his bones!!!! Friday Kevin will have his Spine MRI and lumbar puncture to find out if any of the cancer has spread to his CF or spine. I am exhausted more than any new baby has done to me.

Today two people from Orchard Grove church came to visit Kevin. He wasn't much into visitors at the time, but I was able to eventually coax him into opening the gifts they got him, he LOVED the Simon Says game and played it until the physical therapist insisted he put it down for his therapy session. It totally cheered him up along with all of the posters the kids did in Kids World. He also loved the movie Eragon (sp?) that the Glengary PTA included in their goodie bag. Thank you so much for being apart of Kevin's healing process.


Kevin may go back to school next week. It won't be full days at first and this isn't for sure yet but if he does, if your child goes to school with him you may want to prep them. Kevin has a large, very noticeable 'bump' on his head where the shunt is and a lot of stitches on his head. Right now his hair is shaved rather oddly because they 'are surgeons, not hair stylist.' Hopefully my sister Leslie (who is a hair stylist) can fix it tomorrow. I told him if he wants a mohawk for now that would be fine. All of his hair will be falling out eventually so we might as well make this as fun as possible. Kevin may also require a wheel chair as he is pretty weak. I think the physical changes will be the hardest for the kids (it is for me). I am worried about how the kids will react to him, but I also feel like he could really use a break from this very adult world he has been thrust into.


Thank you for all the prayers, it was so nice to get some positive news in all of this darkness.
Rachel

Friday

Kevin is very uncomfortable. He has the port for chemo in the middle of his chest, his head is still bleeding from the shunt they put in. I don’t think the stitches were done very well. He gets mad sometimes and then starts crying saying he doesn’t want to be a ‘jerk’ to others. He has every right to be mad, angry and depressed. But as he said the other day, ‘mom, getting angry doesn’t get me anywhere.’ He is so smart for seven. This is very scary. I told Kevin today that the disease we keep referring to is cancer. Sometimes when he is in a lot of pain he yells at us that we are trying to kill him. When he is calm I do my best to reassure him I am doing everything I can to save his life.

I am working on getting him fatted up before Chemo. Lots of high calorie, high protein food. I am trying to get him to drink Ensure as much as possible. If anyone has any ideas on healthy foods/meals that are loaded with calories and protein please share!!!

We meet at least a dozen or two specialist, social workers, etc. that I guess we will be working with as we go through this whole process.

I am starting to not cry as much and focus on what needs to be done to get Kevin through this. But there are moments where I just long for the time when I thought I was so blessed to have 3 healthy children. It looks like Kevin will come home for a couple of weeks, maybe as soon as next week. Each day with him is a blessing. I guess none of us have a guarantee.

rachel

Treatment Plans

The treatment Children's Hospital wants to give Kevin involves him going back in the hospital 5 days a week for 6 weeks after being home to heal from all the operations for 3 weeks. Then after that he will be in the hospital for a week once a month for treatments. It is considered a clinical trail. The actual name of the clinical trail is Comparison of Radiation Therapy Regimens in Combination With Chemotherapy in Treating Young Patients With Newly Diagnosed Standard-Risk Medulloblastoma. I found a hospital in Toledo that is participating in a clinical trail which uses stem cell treatment. I am going to look into that because it sounds like it uses less radaiation. The name of that treatment is Combination Chemotherapy With or Without Etoposide Followed By an Autologous Stem Cell Transplant in Treating Young Patients With Previously Untreated Malignant Brain Tumors.

A Day of Surgery

Kevin had the shunt put in along with a port for the chemo and some marrow taken for testing. It was a long day and the poor kid is back to being in alot of pain.

We have a meeting with the oncologist to discuss treatment. We just have to find out how aggressive his cancer is. I am trying to figure out if the treatment plan Children's is offering is really the best for him.


Rachel

Medulloblastoma

You are probable wondering 'what is Medulloblastoma?' It is a type of cancer that Kevin has. The Neurosurgeon who did Kevin's surgeries is at a conference right now and won't be back until Monday the other neurosurgeon wants to give up on trying to get Kevin's body to process the CFS (aka brain fluid) and just put a shunt in tomorrow. He will also need to get a port inserted into his chest for Chemo. I am very scared they are doing operations without fully investigating. We were originally told they were going to challenge his EVD over a couple of days. They gave it less than 24 hours. From what I have learned tonight a shunt will more than likely fail within the first two years and carries a risk of infection. There is another procedure called third ventriculostomy, I am going to ask tomorrow morning why they aren't considering this.

I had to pull Kevin's MRI's CT scans, list of procedures and pathology for insurance purposes and decided to read it over before sending it to the insurance company. I feel like I am getting more information from pulling his info than from the doctors.

Okay, happy stuff! Kevin was begging most of the day to go down to the library. He walked down there with the assistance of 3 physical therapist (1 therapist was training the 2 others). They took the walker, but Kevin on the way back said he didn't need it. I am so happy he has this determination. It is his determination that gives me most of the hope.

Rachel

Losing Track of Days

I don't know how many times I ask someone 'what day is it'?

Well I think today is Wednesday. Kevin mostly had great day yesterday. He got in a wheel chair to go to the library on this floor and get some books. That was awesome! He is facing one set back, it isn't looking good that his head will start processing its own fluid the way it is suppose to. If God doesn't will for his little brain to start taking over again, he will have to have another brain surgery. We might end up back at square one.

The his pathology is suppose to be reviewed today at the Tumor board. Hopefully today they will confirm what was said to us about the tumor after his last surgery.

We have run into some issues with our now old peditrician but hopefully I have it almost resolved and have a new one on board. I don't have time to worry about what to do about that yet.

I am sure the rollarcoaster ride is far from over. I appreciate all of the offers of help, I am not sure how I could do it without all of the help because I still have to be mom to Jake & Scotty too.

Everyones gifts and cards make a HUGE difference. It is so nice to see him laugh at the jokes the boys from his class wrote in their cards and the hearts and love the girls sent certainly made him blush. Kevin misses school and home so much. He is very brave and strong and all the love and support only makes him stronger and more determined to beat this and get home.

Thank you!!!
Rachel
(mom)

Day 5....

Hi Everyone, Kevin is started to feel a bit better. He wasn't in as much pain today as he was yesterday. Kevin was able to move his legs up to his chest to scratch an itch this evening. He's been having a lot of itches lately; mostly due to the pain killers he's on (he's been heavily medicated lately). But moving his legs is a big improvement from yesterday. Kevin also was able to eat some real solid food for the first time (if you call hospital food real food); He ate an ice cream scoop size of Mac n' Cheese. Kevin keeps asking when is he going to be able to come home. He says that he can't remember what home is like. Speaking of the home front... The neighborhood has been kind enough to all chip in to buy Kevin some Webkinz - 30 so far but the plan is for him to receive a few a day. Today he received 7. Kevin was sssssooooo happy to receive them that he flashed a weak smile and said "Tell everyone that I said thank you" in his small weak voice. The Webkins have been Kevin's focal point. We are finding that it helps to ease the pain without medication.
We would also like to send out a big "Thank You" to everyone for all the support!! It's wonderful to know that there are so many people who care and are willing to help. We can't make it through this without you... It's going to be a long process.

Love,
Aunt Becca

Kevin in the Hospital

February 2, 2008 @ 9 pm

Kevin is doing well. He's speaking and wants to eat, but mostly he's sleeping. In the 24 hours since his surgery I'd say he's slept 23 of those hours. Rachel and I stayed with him all last night, but I could hardly stay awake. I'm not much good today, either. Rachel hasn't slept more than 1 hour in that time, but somehow she's still going strong.

I am attaching a picture of Kevin at the present time. He looks pretty much the same whether he is awake or asleep. All of the doctors and nurses are impressed with his progress. He has conversations and recognizes voices (doesn't open his eyes much because he has a little double vision). All his vital signs are strong and he has movement and feeling in all his extremities. We read a lot of books to him which seems to preoccupy his mind and and keep him relaxed. (He has always liked being read to.)

He is beginning to eat solid food again, though we are easing into that slowly. He will have to stop eating tomorrow morning, again, because he will be having a second MRI in the afternoon.

Kevin has a private room and we have decorated it with all sorts of pictures, cards, and posters so that Kevin feels at home as much as possible. His brothers came to visit him today, though both have coughs so we limited their exposure. The most comforting thing for Kevin right now is the trophy he won for coming in third at the Pine Wood Derby that was held today. Even though he couldn't make it to the race, Eric took his brother Scotty and raced the car against the rest of the pack. Eric took video of Kevin's car winning one of the heats. Kevin loves to watch that. I'll attach a picture I took of Kevin's car two days before his surgery.

Mike

February 1, 2008 @ 10 pm

The surgery is over and everything went well, but the neurosurgeon is convinced the tumor is cancerous. We won't know for sure until the results come back on Tuesday from the biopsy of the tumor, but this surgeon has a tremendous amout of experience with this type of brain surgery and he is convinced Kevin will have to undergo chemotherapy. The great news is that the tumor had not spread into the brain tissue. The surgeon was able to scrape off the malignant tissue from the brain tissue. But there is still microscopic malignant tissue remaining that can only be killed with chemo. I still can't believe it. This is crushing news for Kevin who wanted this to be over today. But now it turns out we are only at the beginning. The whole family is here to support each other. I'm a wreck.

Mike

February 1, 2008 @ 4:30 pm

We are Children's Hospital in Detroit. Kevin went into surgery at roughly 2 pm. The surgery is expected to last 6 hours. So far everything is going well (we just got an update about 2 hours in).

Kevin has a golf-ball sized tumor in the back of his head. We don't know if it's grown into his brain tissue or not. We don't know if it's malignant or not. We won't know that until 3-4 days after the surgery. We are hoping that it can be removed without any loss of brain tissue. That part of the brain is linked to fine motor skills. Now that we know about this tumor, is explains a lot about Kevin this past year. It explains not only the headaches, but also his trouble with fine motor skills and even the mysterious, spontaneous vomiting spells he's had over the past year.

Mom, Dad, grandparents, aunts, uncles, and friends are all here hanging out in the 2nd floor lounge area. We also have a room at the Ronald McDonald house. We don't know how long Kevin will stay here, but right now we are assuming weeks.

Rachel is doing well today ... much better than yesterday when we found out about all this. But she--like Kevin's father Eric--is not sleeping or eating much.

Many people are asking about Scotty and Jake. Scotty is staying with friends and only knows that Kevin is in the hospital. Jake is at home with family and friends.

Mike

On the Move!

I was hoping my last baby would stay a baby a little longer so I could enjoy it a little longer, but it seems that is not meant to be. For the first time ever Jake rolled all the way over. Yes, he is now offically mobile & can roll himself right across the room should he choose to do so. Monday we also went to the Auto Show. Everyone tired out pretty quickly this year so we only made it through Ford, GM & the mini's. Scotty loves big trucks! Here are some pictures. Kevin spent MLK day with Grandpa & Grandma Skousen at the IMAX and the muesum.

Belated Merry Christmas!

Christmas was the usual crazy busy. We left the day after Christmas for Virgina & enjoyed almost a whole week with the rest of the Herr clan. It is a trip Kevin & Scotty look forward to every year. They love their time with Grammie & Pappy, Jack & Sam and all their aunts & uncles. The highlight was meeting their new cousins Dylan (4 wks older than Jake) & Liam (2 days older than Jake). It was babies everywhere!!! Mike & Scotty have gotten into making balloon things... I don't know how else to describe it. I got Mike some professional balloons for Christmas, just in case the whole auto industry doesn't work out and we need a plan B. Kevin likes to look up ideas for Scotty & Mike to work on (future boss in the making). Here is a video to give you an example of the crazines that lives in our house.

Tagged

Seven random things about the 'Queen' of the Michigan Herr's


1. I LOVE being a mom. It is the most challenging, patience building, love fulfilling job I have ever had.

2. I feel blessed to have all boys. Though I do worry about the type of world they are growing up in, the type of influences around them and the types of opportunties they will have as adults. Nothing makes my day like their smiles and small successes though.

3. I wakeboard but I don't snowboard, never quite picked it up. Odd?

4. Family is really important to me, but housekeeping?!? I am not so good at yet.

5. I have this drive I can't explain for family history, gathering, puttng it together, etc.

6. I like to share the fruits of my labor & make sure no one is left out.

7. I have an 600sq ft. organic garden in my backyard that I share with some friends.


I am going to 'tag' Becca. Bec ~If you get to it, you get to it. If not, no biggy.

Skiing

I only have a minute or two...lunches for school (that somehow wasn't cancelled despite the snow storm) still need to be made & it is late.

The boys went skiing. Kevin really has his eye on snowboarding....maybe next year. This is their 2nd time ever going...but Mike bought ski's for them Saturday so I am sure there is more skiing in their future!

Visiting Santa

WE FOUND THE REAL SANTA...! For those who were looking for him, he sems to be hiding out at Henry Ford Museum in Dearborn, Michigan. Don't ask us why he choose Dearborn but we are glad we found him! He gives the best presents just for visiting him (little Ty Christmas mouses). Really this was the BEST Santa experience ever (and I have 33 years of experience in this Christmas business).

Here is a movie of the kids visiting with him today. Kevin was so nervous about meeting the REAL Santa (he knows there is a lot of fakes out there....7 year olds know EVERYTHING already).

Thanksgiving

Before thanksgiving dinner Scotty & I had everyone write down what they were thankful for on a turkey feather, then we put the feathers on our turkey.

Hope everyone had a good Thanksgiving!

Thanksgiving Program

Things are very busy in our house since the arrival of the new baby. He cries alot and seems to get overwhelmed easily...never a good thing if you have two very active older brothers. White noise seems to help a little. Swaddling doesn't seem to help. Looking for ideas.....or hope.

Kevin @ Gymnastic's

Fall Fridays

continued...

>Here are more pics of the boys. It was a week of parties. AKA lots of candy. I secretly donated a majority of it to hubby's coworkers. Though I think he did his fair share of 'getting rid of it' ....

Hope to see everyone in their costumes when I FINALLY get to catching up!

Thanks for checking in on us.

A Peguin, Incredible Hulk and a Nija all went to a party....

And got LOTS of candy......