Happy Thanksgiving

In the spirit of giving thanks, I am really thankful for all of you who have not let us battle Kevin's cancer alone. When we faced huge bills and were struggling to keep our family together friends and complete strangers encirled our family and took care of what we could not. We have been able to keep our family together through Kevin's most intensive treatment, we were able to have help in Memphis because you all cared enough to help. So it is this that I am most grateful for. Without the prayers, help, care and support we all wouldn't have made it through this ordeal as well as we have. I am thankful for God's light and that He even in the darkness provided some light.

Happy Thanksgiving!!

Rachel

Prayers for Will

Please pray for little Will. I just spoke to his mom this morning and she told me Will had a seizure today. Will is the cutest little guy, we always enjoy having him around. Please lift his mama and grandma and brother up in prayer also as they are spending Thanksgiving at St. Jude trying to get him better. - rachel

Childhood Cancer Awareness

Some might be aware that I have been beating the pavement as best as I can trying to get anyone of our Michigan Senators to introduced bill HR 7153 National Childhood Brain Tumor Prevention Network Act of 2008 into the Senate in January 2009 and reintroduced into the Congress by my Congressman McCotter. I have not been very successfully, yet. If anyone is willing to help me I would so appreciate a partner in crime so to speak. I am planning to go to Washington in the beginning of May '09 for Brain Tumor Awareness Week. There is a big 5k run/walk at the end of the week (I think it is usually on the weekend). If anyone is interested in participating in the run/walk with me please let me know. I also plan to spending part of that week meeting with the my senators and congressman's health aids (along with some other parents). I guess the Senators and Congressman typically only meet with lobbyist personally. Activist get to meet with the aids.

But I wanted to share with you all AJ's Dad's comments to a US News Report article from the end of October. His comments were a real eye opener for me. I hope he doesn't mind me copying them here, but I think it is important for all of you to read. It has helped me to understand why something I am told is so rare, is starting to seem common.

Childhood Cancer Awareness and Funding
I've lost my Mom and Dad both to cancer. They both had good long lives. Still, very sad. But, I have to tell you, the pain and sadness of losing my 14 year old son Alex to childhood cancer simply overwhelms those losses. Orders of magnitude. Like an atomic bomb compared to a spark.


He was a happy, healthy and athletic young man. He was diagnosed on Fathers Day 2007. And he left us on January 5th, 2008. When your parents die you are an orphan, when your spouse dies you are a widow. But there are no words for parents that lose a child. And, it’s a lifelong sentence.


Childhood cancer is considered "rare". Rare has two meanings in this case, happening to your child or someone elses. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive.


It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE?


And yet, awareness and funding for childhood cancer is woefully inadequate. The National Cancer Institute's budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. And, while the American Cancer Society and others parade bald kids around, it's for sympathy only, the funding they give towards childhood cancer is the same, 3%.


Two major fundraisers for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.


While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today! And drug companies? Well, there just aren’t enough cases to make it profitable to research childhood cancer. They admit it. But boy have we got restless leg syndrome down eh?


And don’t tell me how research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.


I fight back. I am the Founder of People Against Childhood Cancer. Our mission is to raise awareness of childhood cancer. Join the fight at http://curechildhoodcancer.ning.com. Remember, it could be your kid
AJs Dad of NC
Nov 16, 2008 01:08:41 AM



Please take a moment to let that sink in.




The stats really stink....

Rachel

update

Today we had parent teacher conferences for Kevin, and yesterday was his IEP. He'll have a litany of test over the next several weeks, then we'll go from there to see what services Kevin will get at school. The parent teacher conference went pretty well. He's only been in school full time since Halloween, so he's pretty much developing towards grade level in most areas, but not quite there yet. Other then writting he's improving and seems to be catching up. We'll do what we need to do to help Kevin make the progress he's capable of making in writting. He has a long way to go, but I know I've seen solid improvement since his return. Physically Kevin's feeling well. He had a tough weekend, but I think it was a bug. Why you ask? Because I was sick Monday, Tuesday and Wednesday. I have a sliver of understanding after this stomach virus, of knowing how it feels not to want food what so ever. His hair on his head is starting to grow. His eye brows and eye lashes are back, which has brough back a good part of his facial features. He's self conscious about the ridge on his head from the shunt, so we're all happy the hair is beginning to grow on his head. We watched Kung Fu Panda on DVD today then read a few chapters of his Beast Quest series. As usual he was very open and takative in bed. It was a very good night with Kevin, then again every night is a great night with Kevin. Being sick and having to keep my distance from him was terrible. Tonight was a very good night.
Eric

Sad Day for St. Jude Friends

Please pray for the family of little Sarah Parker. This morning she passed away after nearly a year long struggle with a Muliform Glioma, Brain Tumor. They were at the RMH the same time Kevin, Rachel and I were in the Spring. There family is obviously in a tremendous amount of pain, and can use prayers and support.

Eric Saarela

weekend

Kevin wasn't feeling well yesterday. Scotty spent the night on Friday night. Kevin seemed to have decent energy Friday night. The 3 of us even wrestled for a few minutes. Around 6 a.m. I awoke to the sound of him getting sick. It's always scary when he vomits, as that's one of the symptoms of the shunt failing, as well as the presence of a brain tumor it's self. However, it wasn't accompanied by a headache, and it's not abnormal for somebody on Kevin's protocol to experience bouts of nausea for up to 6 months. Rachel came over and kept a motherly eye on him, as I took Scotty to breakfast and went to the toy store for all 3 boys. She called the pediatrician, and we're just going to keep an eye on him. He started feeling a little better through the day yesterday, and this morning he woke up early (daddy slept in) and read for over an hour in bed with me. His appetite isn't what it was a few days ago, and his energy though better then yesterday, is still pretty low. He's tired of me asking about whether or not he has a headache, and feeling around his head and pushing down on the valve on his shunt (if it's hard that could be a sign the shunt isn't working). A morning of Spongebob seems to be just what the doctor ordered. We'll keep a close eye on him and make a decision tonight about school tomorrow. He insist he feels fine and wants to go to school. We'll see.

On Thursday Kevin, Rachel, Mike and I attended a St. Jude Fundraiser and fashion show at Sachs Fifth Avenue. Kevin read an entire book to the attendees/supporters. He was very brave reading into a microphone in front of a decent size audience. I think Rachel and I were more nervous for him, then he was for himself. Tom Izzo was a special guest, and delivered a 10 minute speech. He's new to the St. Jude cause, but with his celebrity profile I hope he continues. Kevin met with him, and he signed a picture and gave him an MSU basketball which he also signed and personalized to Kevin. He was really excited about the ball. He also invited us to an M.S.U. game this year. This is probably something Kevin and I will take Coach Izzo up on. I of course was my normal foot in the mouth self. We were talking and Tom Izzo started commenting on how much tremendous sacrafice we've made. His words were well intended, but me being me had to correct him and let him know it's not sacrafice when it's your child. I wish I could give more, or even switch places with him. Short awkward pause, then our conversation moved on swimingly--lol. He seemed pretty genuine, and had a 90 + minute drive back to Lansing on a Thursday night.

As Rachel wrote yesterday, Sara Parker seems to be struggling for her life. Although her prognosis was never favorable, everybody always held out hope. Sara and her mom were one of the families we met our first go around at RMH. Our prayers are with her family, as they go through an ordeal no parent should ever have to go through.

Take Care,

Eric

Prayers for Sarah Parker

Please pray for the Parker family. Their little girl is losing her battle with her brain tumor. We met Sandra and Sarah at the Ronald McDonald House. Sandra was one of the moms who helped me learn the ropes around St. Jude when we first got there. Sarah has such a cute disposition. I feel horrible that I don't know what to do for them from so far away other than send my thoughts. Please pray that they find peace during this very difficult time. Please pray for their two young sons who have to watch their little sister's passing. Thank you! - rachel

A Glimpse of St, Jude & medulloblastoma kids

http://mench113.blog.friendster.com/2008/11/hope-against-fear/

October Happenings

So Much Candy!

We all went Trick or Treating last night in Rachel's neighborhood. As Rachel wrote, Kevin's best friend Kyle came (he lives a few houses down from me) and went with us. I was incredibly impressed by Kevin's stamina. No he didn't keep up with the other kids (they ran on ahead), but him and Kyle gutted it out and completed the entire neighborhood route. He has enough candy to open up a store! His friend Kyle was very sweet, and slowed down for Kevin as the group of 8 or 9 quickly dwindled to just Kevin and Kyle (and of course Rachel, Mike, Baby Jake, and me). Scotty and the neighborhood kids that were orginally part of our group treated this like a 5k race--lol. Kevin did very well though, and I was pleasantly surprised. We also went to his Haloween party at school. His first full day of school yesterday went with no issues. I enjoyed being in his classroom, and made sure to observe his interaction (or lack there of with the other kids). He doesn't initiate at all. The kids talk to him, and he either doesn't answer or answers back in one quick sentence. He's nervous and it will take some time. A couple of the girls in particular are very kind to Kevin (in his class), and I hope now that he's going a full day he'll feel more comfortable with his role in the classroom. His eye lashes and eye brows have grown back, so his facial features have returned some what. He's done well on his first two spelling test. His teacher told me he had no problem telling her to slow down! I thought that was kind of funny. He's also reading for pleasure more often now, which is excellent progress. I hope everybody is doing well this day after Halloween.

Eric

Cancer Sucks

UGH. What an emtional day. Mike and I attended the funeral for one of his soccer buddies wife who lost her battle with her brain tumor on Sunday. Leah left behind two young children and a loving husband. It is such a loud reminder that each day we have here on earth is a gift.

Kevin is going back to school full time tomorrow. I worry about him not getting enough rest, but he isn't taken naps after school when I pick him up close to noon. He is pretty far behind in school so we are upping his tutor to twice a week. Kevin is also feeling pretty awkward at school with all of the kids. He doesn't like looking so different and has expressed missing St. Jude because everyone was just like him. He could blend in. I think I am going to take him to a counselor to help him cope a little.

Everyone is really excited about Halloween. Kevin is so happy Kyle is coming over to go trick or treating with him. Kevin won the best costume award at cub scouts Wednesday. Last week Scotty won the craved pumpkin contest at the neighborhood Halloween party.

Thanks for checking in on us,
Rachel

full weekend

Kevin did a lot of catching up socially this weekend. My parents came over Friday night to carve the pumpkin we puchased last weekend at the Apple Orchard. He's not spent much time with Grandma and Grandpa since he returned to St. Jude this May for Chemo. He always enjoys spending time with them, and of course getting doted on by grandma. We ate breakfast at the local Coney Island, just like old times. He's eating better but still gets full and a stomach ache pretty quickly. His staple, pancakes and sausage are pretty heavy to begin with, but he did a decent job putting a dent in his breakfast. We also purchased some more fish for our fish tanks, which is always something we enjoy doing together. He played with his friend Kyle on saturday, and even felt up to going to his friend's cub scout bonfire outing. He knew all of the kids, and had a good time. Kevin missed Kyle quite a bit when gone for all this time, and they really enjoyed spending time together. We ageed to let Kyle spend the night like old times. My parents and sister, with her husband Alex, visited again Saturday evening. We all had pasta dinner and spent quite a bit of time together along with his friend. They left late in the evening, and the boys continued their sleep over late into the night. Both boys are very strong willed and use to argue quite a bit over silly things. But I think they were so happy to play together again, that their old bickering ways were replaced with compromise and enjoying the moment. Probably a mixture of missing each other and maturity. Kevin kind of bragged about going out to eat for breakfast to his friend, and they convinced me to bring them to the diner Sunday morning. This afternoon after I dropped Kevin off at Rachels he went to a Haloween party in her neighborhood. I spoke to him over the phone, and it sounds like he had a good time and felt pretty well. Right now Kevin's going to school 1/2 days, and has enjoyed it immensly. Having missed close to 9 months of school, he's obviously behind, but he's been working really hard and making progress. His mind seems to be working well, but he is still writing very slowly. We studied for his spelling test, and although we don't have the results yet, while practicing he was able to verbally spell the list of words with great success. He'll probably go to school at least 1 more week for a 1/2 day. Tomorrow he'll contine his Monday tutoring sessions with his 2nd grade teacher from last year. I hope now that he's done so much, that Kevin allows himself to slow down a little bit. He's seemingly been trying to pack 8 + months of missed time back home into these past few weeks. Overall we're seeing quite a bit of progress, but we've seen him at his worst. Part of me almost forgets what he was like (energy, appearance, sharpness, etc...) before this all happened. He was not right for months before his diagnosis. In many ways it's been over a year since he's felt close to normal. Normal is relative now, but he feels better, looks beter, and sounds better then he has in a very long time. We pray for continued progress, and of course for the insidious medullo cells never to return. On a sad note, two brain tumor patients we've been following via blog, have passed away this past two weeks. Neither went to St. Jude but I followed their blogs throughout their terrible ordeals religiously. One was a 4 year old boy named Owen who had a reocurrence, the other a wife and mother who lived here in Michigan named Leigha. Then there are those we met at St. Jude, who are having their struggles as well. A little girl named Sarah that we met at the Ronald Mcdonlad House has been battling hard with her Brain tumor, as it's metastized. We're all part of a fraternity none of us evey wanted to be member of. However like fraternity members we'll always be linked and always care what happens to one another. It's terribly late (or early in the morning) so I should sign off. Take Care, Eric

Last Weekend

I know, I know it has taken me a week to get these pictures up. It is now a new weekend and I am still playing catch up from last weekend. We are all still readjusting. Jake has taken to screaming very loudly most of the day, so my nerves and what has been left of my brain are pretty much shot. Kevin loves being back in school but feels really far behind. He has been back for less than a week and he is only doing half days for right now, so it is a situation that will be monitored.

I am taking Scotty out on his first mommy date night hopefully this weekend. Jake is such a time hog I am going to try to take the older boys out for 'date' nights so they get a little just mommy and me time a couple of times a month. Scotty is so excited about this. Scotty seems to be doing well in school. It is getting pretty chilly in these northern parts of the country and Scotty is wearing his winter jacket to school to make me happy, but slips his lite spring superman jacket into his school bag everyday. I caught him at school today out on recess with just the light jacket on!!! I didn't say anything but realized I had been tricked into thinking he was wearing his winter jacket.

Jake is into EVERYTHING and this house is pretty poorly baby proofed. I can't keep up!
Rachel

Things coming together

Kevin's still improving. His appetite has been pretty good, though he tends to get a little indigestion if he eats a lot or too fast. His stomach shrunk during chemo, so although his appetite is pretty good (gag reflex less sensitive) he does get stomach aches pretty easy. This should improve with time. He spent the weekend with Rachel, Mike and the boys, but we spent Friday evening and Sunday afternoon all together. Friday was the school's fall fair which Kevin and Scotty enjoyed. Kevin kept up pretty well. He played all sorts of games and won the prizes he was eyeing. Sunday all of us went to the apple orchard with Kevin's cub scouts. His stomach was hurting, but he did ok. All the boys enjoyed petting the goats, especially the babies. The corn maze ended up to be quite the challenge, and Kevin wasn't really up to the 45 minutes or so that it averages to get through it......so we cut it short a little. Baby Jake is walking all over the place now. He's transitioning in from of our eyes from an infant to a toddler. Having spent so much time with him in Memphis I find myself missing Jake when I don't see him several days in a row. He really seems to enjoy being home finally. Kevin officially starts school on Wedensday. The Meap concludes on Tuesday so the Principal and Mrs. Bonkowski decided Wednesday would be the best day for him to begin his 3rd grade journey. Today he received his first tutoring session with Mrs. Stout, his teacher from last year. We want to start out with something familiar so as not to add more pressure on Kevin. He's been very lucky all three years of school, having 3 very special teachers in Mrs. Mandaville, Mrs. Smith and Mrs. Stout. The best way to describe Mrs. Stout (in addition to being an excellent teacher) is a kind soul. Kevin gravitates to people like that. Kevin seems to be coming out of his "chemo fog". His writting is definitely behind, but has picked up dramatically in the past 2 or 3 weeks. He couldn't or wouldn't even attempt to write much at all at St. Jude. Hopefully with some time and hard work he'll catch up with his class mates. He's met Mrs. Bonkowski and toured the class room. We're hopefull and filled with anticipation , regarding his return to the class room. We'll start him off on half days until he feels up to extending. Kevin has also decided what he wants for his "Make a Wish". After a lot of back and forth and deep contemplation he arrived at a decision we all support. As I've written Kevin loves his aquariums. We're looking into Kevin getting another large tank to house the fish that we can't have in our current tanks. He wants larger, slightly more aggressive (possibly saltwater) fish. He has a wish list of fish that have cought his eye over the last few months, and none of them would fit into the delicate balance of our current tanks. I've always told him one day we can get another large tank and get the larger, more vibrant fish that so captivate him. He's very excited, and Rachel has started the leg work with our "Make a Wish" contacts. He's genuinely excited, therefore I'm excited. Hopefully it works out. Our first follow up visit (MRI's) is in January right after the holidays. We welcome prayers for a crystal clear MRI. It's still far enough away that I'm not too stressed, but I imagine as the time gets closer I'll be a mess. I'm still adjusting to staying in the same time zone for an entire week. I actually saw friends I haven't seen in a long time, both on Friday and Saturday this weekend. Well, I guess that's all for now.

Take Care,

Eric

The Story of St. Jude

This is an amazing story about a man who let himself believe in the impossible and made it happen. The 94% cure rate they mention towards the end is for leukemia, but 94% is not 100% and one of the girls we meet while at St. Jude is really struggling to beat the leukemia.

Continued improvement

Kevin has been feeling stronger each and every day. He has a lot of life in his voice that I've not heard for a very long time. He's been lobbying since Monday to go back to school. Rachel and I discussed it this morning, and as long as it's ok with his teacher we're going to have him start tomorrow morning. It's a great sign overall that Kevin's tired of staying home doing nothing all day. It was good for him to have that 10 days of sleeping in, but his friends are at school all day, so it's just him mom and Jake. He has his fall festival (fair) this friday. We're all looking forward to this event. We also are going to the Apple Orchard/cider Mill this Sunday as an outing for his Cub Scouts. One thing we'll need to work on is bed time, now that he's going back to school. I can't speak for Rachel, but I've been a little more lenient with him especially if he's watching a movie. He's been reading quite well, and his math seems pretty good as well. His writting has absolutely taken the biggest hit from this ordeal. We're not certain if it's from the surgery, radiation, or chemo but it's a source of frustration for him. He's actually writting at a lower level then he was in the beginning of second grade. We'll get him all the help he needs to improve. In the grand scheme of things we can handle accademic issues with not a lot of worry. Dealing with these issues seem small now in comparison to what we've had to deal with this past 9 months. We feel very blessed to have him here, with no evidense of tumor left. We know he's not out of the woods for a few years, but I choose to be positive and optimistic. In closing, we still think about those we left behind at St. Jude, every day.

Take Care,

Eric

A Video for My Boys...Love Mom

Re-adjusting

I have so many things on my mind. Kevin seems to be adjusting to being back home. I am amazed at the compassion of the children around him. They are amazing how they have handled Kevin's situation. It has to be a reflection of some very caring parents. We are all adjusting to being back, but it is a good thing. I have only unpacked 2 large bags, there is much more to still do. I am having trouble finding things in my own home because we have been gone so long, but that is just a minor issue compared to the larger picture. All of the kids have been crying alot this past week. I am sure it is just them finally letting out what they have had to live through the last 8-9 months.



I think Saturdays party went well for the kids. I really appreciate all who were able to attend and celebrate Kevin's return. It is such a blessing to get to have him back home!!!! I am still learning how to host a large party like that so please excuse any lack of social graces (for those who were there). I wish I had more time to spend with everyone who was there. I so appreciate all that came and those who weren't able to make it who have been so supportive. It is through you that I draw the strength that keeps me going and helps me not to feel so alone in helping Kevin fight this battle. I am sure what we have faced is difficult to understand from the outside but so many have extended support to us, it is very humbling and amazing.



Over the last two weeks two children with the same thing Kevin was dx with passed away, Owen and Camden. The last month of their lives sound like they were pretty difficult and painful from what I read on their sites. Their mother's have had to endure their own personal Holocaust as far as I see it. Please keep them in your prayers as they try to keep life moving on for the rest of their families. Our friend little Sarah looks like she is rapidly losing this cancer war. I know her mother has to be going through hell while trying to keep a smile on. It is this that I am having the most difficult time accepting. These children suffer terrible deaths. I can't understand why research hospitals aren't looking harder into what in the heck causes this stupid brain tumors. When we were sent home we were basically told, 'see in you in 3 months!' Nothing about how to live now so Kevin can stay cancer free. I fail to understand; why not give parents basic anticancer facts doesn't even happen after a child ends treatment? I know there is a HUGE lack of funding for childhood cancer, compared to adult cancers. Perhaps that has something to do with it. I pray none of you have even a taste of this childhood cancer world we have seen. My dream is that places like St. Jude get put out of business because there are no more children with cancer.





Onto Scotty....Why is it kindergarten is so hard for little boys? Scotty came home with the top of his hand all scraped up pretty bad earlier this week. He told me and Ms. Bonnie that some kids at school kept stepping on his hand, he kind of made up a story around the whole thing, which I found out about when I asked his teacher, who was surprised to learn about his injury, about it. His teacher asked him about it the next day after my email to her. He gave her a totally different answer. He says because he doesn't want to get anyone in trouble. When it came up again today he named names this time and was insistent that a group of kids kept stepping on his hand until it bled (which is obvious). Whatever happened it had to have hurt, it shows in his injury. The next day after it happened he begged me not to send him to school. He's never like that. Of course I am concerned. But since the teacher doesn't seem to think anything is going on I am not sure how to handle this. Do I wait to see if he comes home with any other injuries? UGHH!!!



Jake is walking more and more now. He can walk across the room if he really wants to. I think he really enjoyed the party and having all of the people around. Lisa was great at watching him, I so appreciate she was able to come babysit him during the party.



Rachel

Next Day

THANK YOU FOR EVERYBODY WHO CAME. WHAT A PERFECT DAY. KEVIN HAD A WONDERFUL TIME. I HOPE EVERYBODY ENJOYED THEMSELVE'S.

ERIC & KEVIN

Kevin's Welcome Home Party Info

I am pretty sure I overlooked inviting some people to Kevin's party though I am having one heck of a time figuring it out. So here are the details:

We are so excited about having Kevin home our families have all have chipped in to throw him a welcome home party. Please just bring your self, a dish or beverage to pass if you can, not a big deal if you can't. Please no gifts, we just want to celebrate having Kevin home for now (Kevin has to return every 3 months for scans for the next 3 years) and say thanks to all those who supported all of us through this trial.

Here are the details:

When: Saturday October 11, 2008
Time: 3pm - 6:30pm
We will be having a moonbounce, pasta and some soft drinks.


Dress appropriately for being outside. We live on a lake so parents are responsible for their own children, keep them out of the lake. Please do not just drop your kids off.

You are welcome to come whenever you can between 3 -6. Please email me if you think you will be able to make it so we can have a rough estimate of how many people (please RSVP) to michigan_herrs@yahoo.com . I will email directions back to you.

Thank you for all your kindness through this!

Kevin's Family