Thursday, November 27, 2008

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!!


Wednesday, November 26, 2008

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

Saturday, November 22, 2008

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 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....


Thursday, November 13, 2008


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.

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

Sunday, November 9, 2008


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,


Saturday, November 8, 2008

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

Saturday, November 1, 2008

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.