Thursday, December 25, 2008

Merry Christmas

I hope everybody had a terrific Christmas. Ours was great! Went to Christmas eve service last night, then had the family over my house this morning and we opened presents and had a Christmas Brunch. Santa was kind to Kevin, as well as Scotty and Jacob. Rachel, Mike, my siblings (and their spouces), and grandma and grandpa all were over. Kevin had a big smile on his face all morning long. He's going on vacation with Rachel and Mike until next weekend. Then we embark on our trip to St. Jude. My thoughts are with all the families at St. Jude who had to spend Christmas there. I know St. Jude, the Target House and the Ronald McDonald House all do a wonderful job in making the most of the Holidays for the patients and their families. Still, I know having spent some of our own holidays there, it's not the same as being home. I hope everybody has a safe and happy New Year as well

Eric

Thursday, December 18, 2008

Kevin on TV

Here is the video we got from WXYZ channel 7 in Detroit showing Kevin reading from A Flake Like Mike last Sunday, Dec. 14. It's only a few minutes long. Kevin does a great job.

Daddy Mike

video

Sunday, December 14, 2008

Kids for A Cure Wrapping in Rochester Hills Michigan

There is a fundraiser for CureSearch. CureSearch has united the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation.

Date: December 23, 2008
Time: 12:00 PM - 4:00 PM
Location:Barnes & Noble
2800 S. Rochester RdRochester Hills, MI 48307

Kids for a Cure Gift Wrapping at Barnes and Noble Bookstore in Rochester! Free holiday gift wrapping with a donation to CureSearch featuring performances by violinists Three Crowns Trio and friends http://www.threecrownstrio.com/
Contact for more informationinfo@curesearch.org248-853-9855

So Proud

Words can not express how proud of Kevin I am this morning. He did a wonderful job reading portions of "Flake Like Mike" on the Channel 7 News this morning. He was so nervous, but he pulled through and did St. Jude's and Sak's proud. The goal of course is for his participation to stimulate sales of the book, with $2 of every sale going directly to St. Jude. I was nervous for him, as I sat in the studio with the Regional St. Jude represnative. She was very helpful, as was the Sak's Executive who was on the air with Kevin. We look forward to helping St. Jude in any way we can in the future. I hope some of Kevin's friends, classmates, family, and community memebers were able to see him. As brave as he was, it still pales to the courage he and all of the other St. Jude children have shown through their battles. Saying that, I'm still very proud of him.

Take Care,

Eric

Friday, December 12, 2008

Sunday

The book that Kevin is reading and that Sak's is selling is called "Flake like Mike". Two dollars for every sale goes directly to St. Jude's. Kevin will be on at 9 a.m. unless a story bumps us. Unfortunately we won't know until the morning of. They're planning on having us on, but if there's a snow storm, or if the White House decides Sunday morning to give the Big 3 the Bridge Loan (please, please, please) then there's a possibility he won't be on. I hope everybody has a great weekend.

Eric

Thursday, December 11, 2008

Sunday News

I just want to give a quick note to those who are local (and who I didn't email)....Kevin will be on WXYZ (channel 7) News, this Sunday morning at 9 a.m. Some of you may remember he did a reading at a fashion show/St. Jude Fund rasier at Sak's 5th Avenue a few weeks ago. Now they would like Kevin to read a small portion of the book on television, to promote the cause. I feel awful, but I forgot the name of the book....I will update that soon. Proceeds from the book (it's a children's book, something about snow flakes) goes to St. Jude. He'll be on live, so I'm a little nervous for him, but I'm sure he'll do fine. I'd probably be more of a wreck then him. Thankfully it's just him they're putting on.

Also, please continue prayers for other St. Jude families. Christian Harr in particular has had a rough go of it. Please read his recent blog and send him positive wishes: www.caringbridge.org/visit/christianharr

I hope everybody has a wonderful weekend, and is excited for the Holidays. I know we are. We'll be back at St. Jude the night of January 4th.

Take Care,

Eric

Friday, December 5, 2008

General Update

Things still seem to be going quite well with Kevin. I've certainly seen great strides in school. He still struggles with writting, but is definitely making solid improvements. His math and reading seems to be very good. His hair is definitely growing back. I think by January or February his hair will just be a little bit shorter version of his friends hair. He seems to have one "kind of" crummy day for every 7 or 8 good days. A typical bad day is a little nausea and lack of energy. We all had a very nice Thanksgiving, and are looking forward to Christmas. He's been positive and pretty strong overall. Although, last night he had a terrible nightmare. I fell asleep watching tv on the couch, and he started screaming for me in the middle of the night. I ran up stairs in record time, and he just grabbed hold of me, and told me to get in bed. He held on as tight as he could for a long time. I asked what the nightmare was about, and he said he couldn't remember, but that he was so glad I was there. It was really upsetting because I haven't seen him that scared inquite some time. Hopefully it's just a typical little kid nightmare about monsters or something. Although, we've not seen anything remotely scary of late on TV or DVD. My biggest fear would be if he's starting to have nightmares relating to his cancer. I just don't want to see him suffer any more. Hopefully it was a one time deal. Probably making too much of it (it's Rachel's job to over-react---j.k. ---lol), it was just very different to see him so desperately scared. ............Other then that everythings good. We're going back down to St. Jude in January. It will be strange, because in some ways St. Jude seems like a life time ago, even though it's only been 2 months since we've been home. I'll sign off for now.

Eric

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!!

Rachel

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 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

Thursday, November 13, 2008

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

Sunday, November 9, 2008

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

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

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

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.

Eric

Thursday, October 30, 2008

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

Monday, October 27, 2008

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


Thursday, October 23, 2008

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

Monday, October 20, 2008

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

Wednesday, October 15, 2008

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

Sunday, October 12, 2008

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

Wednesday, October 8, 2008

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

Settling in

Well Kevin's been back home 4 days now. He's been settling in pretty well considering how long it's been. We had a big family dinner (both grandmas, aunts, uncles, and of course us parents) on Monday evening. I think it was probably the first time some of them have seen Kevin in months. He did pretty well, although he started losing some steam after his second piece of pizza. Today Rachel brought him to school for a little bit. He visited his class room for a bit, and sat down in the lunch room to visit some other people including his brother, Scotty. Rachel said it was a bit emotional for Kevin when he walked in to his class, but he was very surpised and excited to see so many familiar faces from last years class. This Saturday we're having a pretty big Welcome HOme party for him. He's very excited about that as well. Tonight we had Cub Scouts, and Kevin did nothing short of spectacular. He was able to do everything the group did, including a game outside that involved a lot of running around. We're staying up late (for Kevin) tonight and watching The Avengers the Next Generation. We're going to the hair salon tomorrow morning to visit our favorite Hair Stylist, Amy (Daddy needs a hair cut really, really bad). Kevin always had a cute little boy crush on her, and he can't wait to tell her his new jokes he learned while in Memphis. All in all a pleasant first week back thus far. We miss everybody who's still at St. Jude, and think about them often. I think this weekend for me will be weird not jumping on a plane, or sleeping in the Target House. If Kevin can adapt though, I certainly can.

Take Care,

Eric

Saturday, October 4, 2008

Kevin's Home!!!!!!

Kevin is offically home! As Rachel mentioned his line was pulled out on Friday. I flew down that same evening and we all packed, and packed, then packed some more. Kevin, Grandma Skousen, Jake, Scotty, Rachel and I flew back and arrived in Detroit at 9 p.m. Kevin was very happy (Mike is driving all of the stuff and their car back - THANK YOU!). It's perfect timing since he has tomorrow and Monday, when his friends don't have school. We're arranging a welcome home party for next Saturday. Details will come over the next day or two. We really want as many kids to come as possible. He's been showered with kind gestures and presents during the whole duration of his treatment. We ask people who come to just help us share the celebration of Kevin's homecoming, without the need for gifts. We're all extremely happy, and a little exhausted.

Feeling Blessed,

Eric

Friday, October 3, 2008

Going Home!

They pulled double luman catheter that Kevin had in his chest today, and I have booked our flight back home for tomorrow night. Hopefully I can have everything packed up by then!

We are so excited to be heading home finally!

Rachel

Wednesday, October 1, 2008

He's eating!!!

From memphis


Kevin is feeling really good. He is eating more than he has since radiation. We went to Chili's with a group for families from St. Jude (and one of Kevin's friends who is from Memphis). Kevin ate almost all of his pizza that night and he has been going strong ever since. We have been able to stop is odansatron. He did get a little nauseated this morning after our pillow fight (that is how good he is feeling, he attacked me with a pillow this morning.)


So we are just waiting for his platlet level to get to 50k, it was at 32k yesterday and 20k on Monday, so it is moving up. They have him scheduled to pull his line on Friday, but they told me not to expect his counts to be high enough on Friday. His hemoglobin level droped yesterday and both of those count levels have to be stable before we can pull his line. So we will just wait and see but it looks like he will be home next week.

Monday, September 29, 2008

Eating out today? Choose Chili's please!

If you were planning to eat out today, please choose Chili's. Here is why it is a big deal:



September 29th is here. It is the day to eat at any Chili's Restaurant where 100% of the proceeds are directly donated to St Jude Children's Research Hospital in Memphis, Tennessee. Click here to find a Chili's location near you. http://www.chilis.com/locations/default.asp

Kevin is doing better each day because of the wonderful work they do at St. Jude. We would not be where we are today without them. Kevin received his radiation, inpatient chemo treatments & bone marrow transplants in the Chili's Care Center. The inpatients rooms have Wii's which encourage the kids to get up and move around even when they don't feel like it. Each patient's room has an attached parent room, and since no one is allowed to use the patients bathroom - except the patient -, having their own bathroom is important cuz when you have a very sick child you really can't leave their side. When we were in Detroit we had to share one small dingy bathroom with all the parents on the 5th floor, and there were times we had to go to another floor just to use the restroom! St Jude understands (and requires) that parents stay with the patient at all times. They work hard to make accommodations.

I have to mention that our insurance originally refused to pay for Kevin's treatment. St. Jude never stopped Kevin's treatment because of our insurance refusal to pay, and if a family doesn't have insurance, they don't have to worry, St. Jude takes care of it for them. How wonderful is that?!? St. Jude held my hand through the appeal process with our insurance who eventually agreed to pay most of it.

They have an amazingly organized and efficient system, with dedicated schedulers who handle coordination of each patient schedule. Each afternoon when we are outpatient we are given a print out of Kevin's schedule for the next day. Almost everything is taken care of on campus. No driving from one end of town to the other. We get to concentrate on getting Kevin better, not chasing down doctors, making appointments and trying to be a scheduler myself. It is amazing, especially after our experience back home.
So please eat, drink, and be at Chili's tomorrow anytime. Dine in or carry out....it all goes to St Jude.

Thank you to the 50 million dollar commitment Chili's has made to St Jude's. Thank you to all the Chili's patron's who help make life a little better for the families battling childhood cancer.

Also, if you have one, bring any old cell phones too. St Jude will get $1.50 for each one regardless of its condition.

Rachel

Sunday, September 28, 2008

Jake Walking



He still isn't sure about this whole walking thing, but we got him on video taking his first steps. I of course had just gotten out of bed (Mike let me sleep in because Jake has been waking up in the middle of the night alot lately) so excuse how horrible I look.

Saturday, September 27, 2008

Coming along

Well I arrived in time on Friday to take Kevin to his 2:30 labs. Next at 3:30 we went to E Clinic to go over the results of his blood test. Dr. Gajjar wasn't there, but his Nurse Coordinator was there to cover everything. It was pretty much positive news. His ANC has gone up from 700 to 1500. This is without he benefit of GCSF that he was formerly taking to artifically stimulate his counts. This means the Bone Marrow Transplant has started to hold. They don't want Kevin to have any more transfusions unless absolutely necessary. This Sunday may or may not be necessary. He has a Lumbar Puncture on Monday morning, but his platelet count needs to be above 20 or they won't do it. Right now they're at 22, but was at 23 or 24 prior. Platelets have little to do with his body's immune system, but if they're low he could have he propensity to bleed or bruise much easier. She said often times the platelets are the last to recover. She also said most of Dr. Gajjar's patients go back to school soon upon returning home. He does seem stronger now, and we probably will have the option to go half days if his strenth doesn't allow for a full day. We'll take off a week at the very least, so he can get some much needed rest in. As Rachel mentioned he did quickly lose a pound when he was taken off T.P.N. He'll need to be monitored closely since he's so thin right now. However, his appetite has picked up some. Today for example, he had a bowl of cereal in the morning, a piece of cheese pizza in the afternoon, some yogurt later with rachel, then tonight had a bowl of pasta with me. He still gets nauseated in the morning, but after given his Ondansetron he recovers well within 30 to 45 minutes. Of course when school starts we hope he won't be so dependent on the medicine. But Dr. Gajjar's Nurse Coordinator said some kids remain on Ondansetron for up to 6 months after going home. If that's the case we'll have to give it to him the second he wakes up, so he feels well by the time he's at school. I don't think Rachel or I plan on sending him to school while he's feeling terribly nauseated. If he's late, he's late. He's improved dramaticaly since I left over a week ago. Hopefully in another 10 days his improvment is a the same degree. If that's the case I think he'll be ok. He's eating a chocolate chip cookie now, as I write this so that's 3 meals (very small portions, granted) and 2 snacks today. We need to get him up towards 1,500 calories somehow, as that's the amount he received from TPN. Finally, as Mike eloquently wrote thank yo to all involved in the fund raiser. It was nice to see friends, family and people from the community there. Kevin was excited to hear Mrs. Stout (last year's teacher) and this year's teacher Mrs. Bonkowski were there. Tomorrow we find out if he needs a platelet transfusion. Hopefully not, as it will mean we'll be stuck in he medicine room for a few hours. Not the best way to send my birthday, but at least it will be with Kevin.

Good Night,

Eric

This past week in Memphis



My youngest sister Sarah was here to help. Kevin really loved having her here and insisted on sharing her room while she was here. It was really very cute. You could tell he has really missed her. Scotty was very upset about missing a week with Aunt Sarah and upon his return reminded me again that he missed out because he had to go back to Michigan, which he is not at all happy about. "Mommy, I only had one day with Aunt Sarah, Kevin got more!" is what I heard this evening when putting him to bed. Maybe Aunt Sarah can make it up to him...(hint, hint little sis! Aren't you glad you are so loved?)

I am now on my own during the week as I think we have exasperated everyone with at least one trip, if not more, to Memphis to help me with Kevin and Jake. They have taken Kevin off of TPN (basically nutrition through a tube) which makes my evenings a little more manageable since it is just me now with the exception on the weekends, but Kevin lost one whole pound within the first 24 hours we stopped the TPN. So if that downward trend continues we may end up back on TPN. We are trying to get him to take his meds orally now instead of through his line.

I haven't been even remotely capable of keeping track of how much our travel and living in Memphis costs have been the last 9 months, but after discussing it with Mike tonight I am sure that figure is well over $30,000. The fund does not cover any loss of income Mike, myself nor Eric have endured because of this terrible cancer and with things getting tighter - it feels like each day - we really appreciate having the fund that has kept our family together over the last 9 almost 10 months. It has kept me somewhat sane as I have not had to deal with Kevin's chemo treatments and infections - with a newborn baby in tow - all on my own, far away from help of friends and family, and without this fund I would have. I know having the family around Kevin has helped him deal with all of the horrors of treatment in the security of knowing his family was around him, going through it with him, that he had a team of family who loves and cares for him. I am sure if you ask almost any St. Jude mom they feel like they are living on the edge. I don't think I will ever view life the same again. I feel like God has removed his sheltering arms and let me see the dark side of life, but please don't think that I also don't see the blessings. When nature sent us to a very dark side of life, we also got a glimspe of the good side of humanity. I am amazed and humbled by all of those who reached out to lift us all up. So THANK YOU, THANK YOU, THANK YOU!

Rachel

Friday, September 26, 2008

Comedy Fundraiser a HUGE Success

The Comedians for a Cause fundraiser at Joey's Comedy Club was a huge success last night. We had 168 people in attendance for Kevin and raised over $8000. A lot of that money came from many more people who gave contributions but could not attend. Seems like everyone who was there truly enjoyed the comedians, in particular the headliner Brad Upton.

Thanks once again to Julie Zube for pulling the whole thing together: coordinating with Joey's, accepting checks, setting up before hand. Thanks to all the people who brought the raffle items and helped set up and run the raffle, in particular Lynn Burrows, Carole Costa, Laura Dutcheshen, Art Saarela, Jan Skousen, Sarah Skousen (and her many friends ... sorry I didn't get the names). And thanks to John Bommarito for reading off the many raffle item winners at the end.

For those not in attendance, these fundraisers are the only way we can keep our family together while Kevin undergoes treatment at St. Jude. So far this year between airline tickets, rental cars, accommodations in Memphis, and parking at the airport, we have spent over $27,000. That doesn't include any of the money spent toward his healthcare. And that total continues to rise as Scotty and I are going to fly down to Memphis again in a few hours.

Mike

Wednesday, September 24, 2008

Kevin's Shunt

First off We didn't learn much from Tuesday appointment other than Kevin needs to eat!!! Kevin's Dr. wouldn't give me a definite date on releasing him as he is trying to work out some issues with Kevin's medicine. But one of the PA's told me more than likely it will be sometime in 2 weeks as long as Kevin's bone marrow starts kicking in building his immune system up. When I started asking questions the doctor started backing out of the room, I knew he didn't have the answers yet. So we are in a wait and see holding pattern. I do want Kevin's line pulled before we go home. It is just one more place for him to get an infection and I certainly will not allow him to go to school if it is still in when we return. The double luman has been a source of half of his infections through this whole thing.

When Kevin had the tumor in his head, it had been there so long and had grown large enough that it caused damage to his brain to the point where the fluid we all produce in our brains couldn't drain properly in his. So after his emergency surgery to relieve the pressure that had gotten dangerously high then 24 hours later he had his tumor removed in another surgery, a week later last February Kevin had to go through another brain surgery to have a shunt placed permanently in his head. The shunt is the bump on top of his head that everyone can see since he has no hair. From the shunt down to his stomach is tubing that runs under his skin which the fluid drains into his stomach. The shunt surgery was worse than the other brain surgery to remove the tumor. Kevin had more issues getting adjusted to the shunt, but now he seems pretty adjusted except for one big thing. He can't ride on rollar coasters or any amusement park ride for the most part as long as he has the shunt. It can kill him. About 2 years ago we took Kevin and Scotty to Cedar Point for the first time. Kevin was just big enough for the Raptor Ride. He loved it, he road it several times that day. Kevin surprisingly has a dare devil streak in him.

Yesterday as we were waiting to meet with Kevin's doctor, Kevin started talking about not being able to go on rollarcoasters. He was pretty upset about it. He was a little mad at me for not getting him an MRI sooner when he first started showing signs so that the tumor wouldn't have permanently damaged his brain and he wouldn't have to have a shunt. He also wanted me to promise no one else in the family would go on rollarcoasters since he couldn't. He was upset that whenever he goes to the boardwalk or any amusement park that all he can do now is win prizes.

I also caught him staring at himself in the mirror. I am pretty sure Kevin hates his shunt, he is just such a good kid he tries not to show it.

But this brings up another conflict. Kevin qualifies for Make a Wish since he has fought a life threatening illness. Kevin keeps picking amusement parks for his trip. It really hit me hard that going to one of those places for his wish might not be the best thing for him emotionally until he has peace within himself about his new limitations. One of the places on his list was Disney World, which I remember there being alot of rides as the highlights. The other plan was to go to California and go to Lego Land, Disney Land and San Diego Wild Park. Even though he has his wish submitted he still is uncertain about his final choice but he only had until November to change it.

So I need idea's from all of you. Kevin loves fish (him and Eric have aquariums at Eric's house), he wants to be a paleontologist when he grows up and loves being around other people. We have taken Kevin to the Smithsonian since he could walk and he seems to enjoy anyplace with a story. So please send us any vacation, destination ideas that stay away from amusement park ride type stuff. We need any and all ideas you might have. You can email (michigan_herrs at yahoo.com) them to me or post them in the comment space.

Sarah, a little 3 year old St. Jude patient is in need of lots of prayers. She has so many tumors growing inside her little head they just did an operation to put a shunt in which she seems to be struggling to adjust to. Sarah has been given until Christmas to live. Please say a prayer for her parents. They are doing a great job dealing with this nightmare of a situation they have been dealt but they are losing their daughter before their very eyes. No child should ever have to go through what these children go through. Sarah also has two older brothers who are having to go through a very grown up life situation (they are near Kevin and Scotty's age). If you can, please leave Sarah's family a short message of support. As a mom with a son with cancer I watch their situation and know that this can happen to any one of us. This just makes me sick that these kids and parents go through this.

Thank you for all of the love and support. You all have really blessed our lives.

Rachel

Comedians for a Cause

Hi All,
The fundraiser is fast approaching. The love and generosity everyone has poured out to Kevin's family is truly amazing. Starting at 7:30(so try to get there a little early to check out the stuff), we will have an auction with tickets before the comedy show begins. Tickets will be sold for $2 and $5. Some of the $5 ticket items include:
2 Lions vs Chicago Bears tickets on Oct. 5
4 Lions vs Washington Redskins on Oct. 26
2 U of M football vs Toledo on Oct. 11
4 Tigers vs Tampa Bay Rays on Sept. 27
2 Red Wings vs Atlanta Thrashers on Sept. 28
Autographed basketball by Antonio McDyess
There are many $2 ticket items ranging from restaurant gift cards, Salon hair cuts to gift baskets filled with goodies. I'm looking forward to a fun night celebrating love and hope for Kevin and his family.
Sincerely,
Julie

P.S. There are also (2) bowling parties for 16 people (a$250 value each) at Lucky's in Novi and a bowling party at Wonderland Lanes in
Commerce Twp.

You can still buy tickets to the event at the door.

Tuesday, September 23, 2008

Nearing Kevin's homecoming

I spoke to Rachel, and apparently Dr. Gajjar plans on sending Kevin home the week of the 6th (2 weeks). Kevin sounds much more energized. We've spoken a few times a day the last couple days, and he's just been real animated and conversational. His counts are up over 2,000, which helps. They will fall though, since he's ended GCSF and we must see how far they drop. The transplant should start taking hold soon. Apparently Dr. Gajjar wasn't ready to talk about what we should plan as far as Kevin's returning to school. There also seemed to be some disagreement about whether or not to send him home with his hickman. He's taking the micro-fungal for the lesions on his spleen. Rachel was pretty adament about pulling the line before he goes home. We've heard all his infections have stemmed from having plastic exposed to the elements and running into his body. We'll see I guess. Worst case scenario they pull the line in our follow up visit for MRI's.
On another note we've received some kind messages from people in Kevin's school and the community. To answer your question, Kevin would enjoy receiving the notes from school mates. He wants to be missed, and wants to know that he's not forgotten. Also, one last reminder about September 29th. Monday the 29th Chilli's donates 100% of peoples purchases to St. Jude's Children Hospital. I know my family and I are celebrating my birthday and Alex (my sister's husband) birthday there on the 29th (his b-day 29th mine the 28th).

Take Care,

Eric

Getting Coser to Going Home

Kevin is officially back under E clinic's care. He is off of the heavy duty antibotics as of yesterday. This past weekend he had to get platelets but his hemoglobin seems to be holding strong, so no word of another blood transfusion. There is talk of getting him to eat so we can wean him off of the TPN. I will post more later hopefully. Hopefully we will know more after our next appointment. Right now we are waiting for Kevin to get labs from Assestment Triage.

Rachel

Saturday, September 20, 2008

Pictures

Finally I found pictures from Kevin's birthday. There are pictures from Jake's birthday too.

Thursday, September 18, 2008

Gathering Strength

Kevin was released today from the B.M.T. unit around 3:30 We went back to the Target House and relaxed and played with his Spider Man wax figure machine. He had fun with this, while showing obvious comfort not being hooked up to his big hospital medicine pole. He has redi-meds and T.P.N for nourishment that still gets hooked up through his line. However, his TPN has a backpack and the redi-meds are 30 and 60 minutes, so for the most part he's free. His TPN is administered over 12 hours so we schedule it so he's hooked up while he's sleeping for the most part. There was a pasta dinner at the dining area at the Target House toinight. This is always nice, as we get into our hospital schedules (especially when he's inpatient) time doesn't allow us to see our St. Jude friends much. I knew Kevin wouldn't be able to eat at the dinner, but I was hopeful he could manage some soda and maybe a cookie. He had a sip of soda, smelled the aroma of the pasta and garlic bread (this is before I even made a plate) and was sick within 5 minutes. He didn't make it out of our booth. Anywhere else this would be a little embarassing and Kevin would be really self conscious---not here. This is a common occurence, and staff members were on top of it immediately. I took Kevin to the bathroom to clean up, and we went up stairs to our room until Rachel and her Aunt Lannie arrived (with Jake of course). Rachel was kind enough to bring me up a plate as well, and we all had a nice pasta dinner in our apt. Rachel and Kevin spent some quality time watching a movie, while I visited some friends downstairs. Apparently Jake became pretty moody, so Lannie walked him around downstairs and found me playing pool. Jake loved watching me play, and was appeased for a good run of 4 or 5 games. It was really nice having Lannie here to help out. I think she really enjoyed spending time with Kevin and Jake. She has a really good heart. One of my good friends at St. Jude, Ali gave me some wonderful news about his daughter Aline. She has a fairly similiar type of brain tumor that Kevin has, although it's called a PNET, since it's in middle/front part of her brain. When initially diagnosed she was found to not only have it in an inoperable area, but MRI's also show that it metastisized up and down her spine. This put her in the high risk protocol. Radiation and chemo has managed to shrink her tumor from 6 X 4 cm to less then 1 x1 in her brain. And the spine is clear except for a tiny spot at the very bottom. I've become pretty close with Ali and was so incredibly happy to hear his news as he shared the recent MRI results with me this evening. The doctors expressed that they were very pleased and have told him her prognosis has gone from not so great to quite promising. I know 99% of the readers don't know them, but a few have met her and I'm sure will share my joy. She's always full of smiles, and bats her little 4 year old eye lashes at you when you address her. Unfortunately there are some sad accounts at St. Jude, but there are many good one's as well. Also our friend Heather (according to her blog) continues to gain strength and make great strides in her transition home. We're very proud of her!! Kevin was very talkative when I put him to bed tonight and lay next to him. We had a nice private talk that was motivated 100% on his end, and it was very positive. He believes in his heart and soul that he's beat this. I choose to believe him unless told other wise, and will not tempor his optimism. He talked one by one of his friends back home, and his memories and anticipation of further good times. I leave tomorrow and am already a little sad to not be with him. But I have a pile of bills and work to take care of back home. It's getting late, and we have an 8:30 labs appt tomorrow morning.

Good Night,

Eric

Last Day

Big day today. The nurses even mentioned it yesterday, that if things go well this could be Kevin's last inpatient day at St. Jude. This is only the early stages of the journy, but I can't help but be filled with optimism. It's going to be a hard road, but all we can do is fight the fight and pray everything goes well. I'll be going home soon. Kevin, hopefully will be following in a couple of weeks. Thank you all for your support during this trying time. At this point I pray Kevin's counts are strong for his return home. I can't wait to go shopping for the fish he chooses for our aquarium. Hope all is well at home.

Take Care,

Eric

Wednesday, September 17, 2008

Childhood Cancer

I am writing this after reading another child's story. A child who had the exact same tumor as Kevin, who had the exact same prognosis, the exact same percentage chance of survival. He didn't make it even through treatment. Probably one lone cancer cell went wild and proliferated tumors wildly within his small body. Here at St. Jude I have seen children die terrible deaths. St. Jude tries to do it with dignity, but really where is the dignity with all of the morphine they have to be on and their mothers still cannot hold them because the tumors running down their back cause so much pain? I am watching children (I mean CHILDREN!) go on end of life treatment. No child should ever have to be put on end of life treatment. I am angry. No mom should ever be told, well at least you have more children. What mom would ever wants to choose to give one of her children back to God before they have gotten to live a full life? What mom would it be easier for her to lose a child she carried for months within her own body because she has another child? Yes, I have been told, well at least you have more children. Like another one of my children can replace the other. To all the moms out there....would you be able to lose one of your children and just replace them like that with one of your other children?

Just the idea of losing Kevin caused me to push forward despite almost everyone nay saying something was wrong with him in the beginning. I will never forget that night waiting for Kevin's MRI the next day and how even the residents along with family made me feel like I was wasting everyone's time, Kevin just had migraines like his dad had as a kid, why couldn't I just accept that? Just the incredibly painful thought of losing Kevin caused me to research, to reach out, to try to try find the best place, the best protocol for Kevin to get treatment. Just the thought of losing Kevin caused my mommy instincts and see through the lies the oncologist at DCH was telling us when I grilled her about her experience and the protocol they offered us. Just the thought of losing Kevin caused me to pack up our almost 4 month old baby, myself, and Kevin within 48 hours and drive 15 hours through an ice storm to make sure he qualified for this protocol, to spend almost a year away from our home. I raced like crazy to get all of his medical records, the slide of the tumor Fedex to Memphis. God sent us an angel to help us get in the door, I didn't turn that angel away.

Ask any mom who has lost a child and having another child doesn't make the pain any less, doesn't remove the hole that will be a permanent part of her heart for the rest of her life. I am a mom and though I haven't lost a child I can see that hole in any mom I meet who has had to send a child back to heaven, even if she has more children.

No child should ever suffer through cancer. No parent, weither they have more than one or not, should ever lose a child to cancer.

Please sign the petition to raise RAISE AWARENESS & FUNDING FOR CHILDHOOD CANCER . Cancer is the #2 killer of children in the united states and gets a lot less funding than adult cancer research.

Rachel

Out tomorrow

The doctors are confident they will let Kevin out tomorrow. As I mentioned his counts are coming up, and they're seeing what they want to see overall. I've had a little stomach thing the last 24 hours. I mentioned it to Rachel when I came in this evening, and we agreed we should ask the nurse if it's safe for Kevin that I stay there. Although I don't have a temperature, I've been sleeping a lot, and have not been able to eat anything without consequence (stomach thing remember). Lucky for all of us her Aunt Lannie (spelling?) is in town to help Rachel out. The nurse quickly said that I need to leave the BMT unit, especiall with Kevin still being below 500. He understood, although I was pretty bummed. Aunt Lannie will stay with Kevin tonight. She's very kind, and has several grand children of her own. She'll do just fine with Kevin, and it will give him an opportunity to get to know her better, as she lives in Utah. So tonight, I"m in the Target House and will actually sleep in a real bed for the first time in nearly a week. In other news, our friend from St. Jude, Heather seems to be making a smooth transition back home. We're very happy for her, and has set a great example for Kevin's soon-to be home coming.

Take care,

Eric

Counts coming up

We recieved good news this morning from the Nurse Practicioner. His counts are coming up accross the board. His WBC is up significantly and more importantly his ANC is up to 200 (from 0) This more then likely means his ANC will spike up over 500 tomorrow. She wasn't sure if the doctors will let us out today or tomorrow, but at least now we know it's soon. Also, his Brain and Spine MRI came back clean. This of course is excellent news. He'll get his lumbar punture soon, but typically when the MRI's are clean the results of the lumbar puncture are clean as well. He's also eating a few potato chips this morning, which is an upgrade. When he gets out of here, we need him to gradually pick up his eating habbits. Overall a great morning!

Eric

Monday, September 15, 2008

Monday Night

Today has been a pretty good day for Kevin. He's still neutropenic (low white blood cell counts); in fact he's still at 0. With that he's a little weak, doesn't really eat, and experiences nausea. However, psychologically he's doing much better. Rachel and I have some difficult decisions to make regarding school. We hear conflicting information from people we talk with. One of the BMT Doctors who's speciality is infectious diseases, said in no uncertain terms that he should get home bound schooling for a period of 1 to 3 months when he goes back home. He said although his neutrophils will be up, which will protect him from Bacteria infections (which he's suffered 4 times since chemo) that his immune system as a whole will still be compromised which will leave him vulnerable to viruses. As we all know kids bring and share all kinds of germs and viruses to the class room. So, if we go soley by his advise Kevin will be homebound schooled for a few weeks when he goes home, until he's a little more equipped to fight off illness. However, we still need to talk to Dr. Gajjarr and I'd also like to talk to Dr. Hale. We've heard of both ends of the spectrum with kids returning home. Some hit the ground running (not like others, but pretty close) and others definitely need extra time to rebound. It's not clear which category Kevin falls into. I talked to him about it tonight, and he feels if it's safe he definitely wants to return. He said maybe if necessary take a week off to catch up on sleep, but doesn't want to miss more then that. He will be a large part of the decision, but if his counts are below 2,000 there's no way he can go back. The nurses I've spoken to who are moms for the most part, and work in the BMT unit have sides with the Infectious disease doctor. Saying November or December or even January would be much safer. I asked in a way of course that was what would they do. They were hesitant to ask if it was on the record (they don't want to interfere with doctors guidance), but when asked what if it was their child they spoke candidly. We'll speak to the doctors and see how his counts rise and go from there. His counts will go up soon, first above the 500 that it takes to be let out of the BMT level, then above the 2000 which is considered neutropenic. However, it's kind of a false count as he gets daily GCSF pushes through his line, which assist the rise of his counts for the short term. The actual Bone marrow transplant is more long term, but it takes a while. So once his counts go above 2,000 for two days in a row they'll take him off GCSF. Then we wait and see what his counts do. They'll actually probably shoot up to 3,000 or 3,500 for a couple days, then once the GCSF is out of his system they typically fall back down, although not down to the critical 500 or less levels. He really wants to go back a.s.a.p to see his friends, but we're not going to rush it if it's not safe for him. We're still kind of in an information gathering and wait and see pattern. We do need to tell his school something though. If he's going to be homebound schooled at first, we need to get the wheels in motion. For now I'm pleased that he exhibited some longing again for a return to school and a return home. A couple nights ago he was in a different place. He knows he has a big family to support him every step of the way. He feels comfort in knowing that we're nervous too, which is kind of a weird thing to say I suppose. When his counts rebound he'll have even more energy and I suspect will be even more eager to get back. I think accademically he's going to be ok. He'll start off behind a little, but he does like to learn especially when given positive feedback. We did some math today, and I was real impressed, and he really fed off of that. I'm not sure when we're out of here, as his counts will come up all of a sudden usually. My guess is wednesday or thursday. I hope everybody back home is doing well.

Take Care,

Eric

Sunday, September 14, 2008

Sunday

Kevin was pretty low key tonight. Jake was getting squirmy and he needed to go for a walk and at first Kevin was going to go with us but when he sat up and started to get ready to go he started to feel queasy. So I went and got him a movie, Zanthera. He watched that while I walked Jake in the hallway until he feel asleep. Kevin and I talked about Halloween and how this one might be kind of different for him. The doctors have recommended that we drive him around for trick or treating as running around outside might be too much for him. He talked about different scenarios and he was upset at first, and then very maturely said, " Mom, if it just this halloween its no big deal, lets just try to make the best of it that we can." So that I will. This whole experience I think has caused Kevin to put life in a perspective that not even most adults have, including myself. Recently he has shown an ablility to handle tought social situations with class with one big expception, getting vitals done late at night.

Rachel

Scotty Lost His First Tooth


Here's a picture of Scotty with one less tooth. His first tooth came out today (with a little extra encouragement from Dad).

Hanging in there

Kevin's energetic mood dwindled a bit as the day went on. He experienced a little bit of nausea with Mike, and when I came in around 6:30 he was really tired. Kevin seemed to have a little bit of the blues today. This infection will turn out fine, but for his psychological state this additional inpatient stint was the last thing he needed. He's tired......In fact I think he's tired of being tired. I tried to cheer him up a bit, which isn't always easy to do. He's so sensitive to other people, he'll say what he needs to say so you stop worrying about him. I think he had a good time playing Wii with Mike today, and he did seem tuned in when we read a few chapters of a book tonight. I tried to cheer him up by reminding him we'll be going home soon. A few weeks ago he was so incredibly excited. Now he's glad to be leaving here, but said he's not as excited as he thought he'd be in going home. He started talking about how it's been such a long time and how so much has happened. We're all nervous, so I totally get it. I guess I was just hoping his excitement would pull us along with him. Kevin has immense pride. It's tough for him to come home, knowing he's the sick kid. He's excited about our fish tank, and that's honestly been a saving grace for both of us. He reads through a book I bought him (Freshwater Fish A to Z) religously. He loves pointing out a new prospect and saying "daddy do you think maybe this fish will be compatible with our tank"? It's really the only thing he mentions about home with any kind of excitement anymore. He had a really good bond with his second grade teacher and is still a little weary of the new start in his third grade class. I've assured him his 3rd grade teacher seems very nice and caring. This would not have been a good year for Kevin to have a real militant, bottom line, un-caring teacher. Thankfully it seems his new teacher is none of that. He's very self aware, and knows he's a little emotionally fragile right now. As kids get older they get more and more discerning with who they hang out with. And Kevin in no way wants to be some symbolic mascot for illness and sympathy. I think it's apparent as I've gone on here, that his blues became my blues. Writting in this blog is very theraputic for me, as I'm pretty introverted and introspective. Any way, I'm sure when he's feeling a little better he'll perk up. For the time being, I'm going to try and keep him busy with fun stuff, and not make him feel like he has to talk about things if he doens't want to. He's so much like me in that regard it's scary. He did show some brief joy when I told him Max is in his class. The combination of brain surgery, radiation, and high dose chemo has changed him in many ways...Some of which will be short term, and some not so much. We'll just have to embrace the improvements he makes and have realistic expectations. When he's on, his personality still lights up a room. That's something none of this has taken away from him. One thing he's never said is why me? I would be lying if I said that question hasn't entered my mind a few times. We will all move forward, and embrace the rewards life gives us from this point on. Sorry for the melancholy post. I usually try and stay very omptimistic, but I'm human and so is Kevin. And when your little boy is down in he dumps it's a bit contagious. We need his counts to go up, so if there are people praying for Kevin, please specifically pray for his counts to rise quickly (I know I am). We love St. Jude, but as far as being inpatient Kevin has had more then enough.............It feels better to get that little diatribe off my chest......I promise more cheerful updates are sure to follow :-)

Eric

Saturday, September 13, 2008

Marked Improvement

Good morning!

The Nurse Practicioner who's been seeing Kevin the last few days just finished her daily update. She's very pleased with how Kevin's progressed the past 24 hours. She said his fever seems gone (according to temps taken every 4 hrs) and that the infections are no longer growing on the culures taken from his line. She was very helpful with all the questions I had last night. Well, actually Terri (Heather's mom) answered the one about why he went to 24 hour TPN, which is standard protocol when they go in with an infection. First off, they have identified the second infection in the other line; it's a alpha strep strain. She said it's an infection that's often times found in the mouth. The other line as Mike had shared with me last night, is an ecoli infection. She said that within the last 24 hours both have seemed to respond very well to the antibiotics. Now that the second infection has been identified they can consider taking him off of the second antibiotic and keep him on Vancomycen. That's the doctors call though so she couldn't say for sure. Next, they all doubt his HGB was really at 6.5, but are sure it was low. She said it jumped up past 10 quicker then possible after a transfusion if it were really 6.5. Any time you see critical next to your childs lab reports, it's not a comforting feeling. This was pretty much what Mike said as well, that they were doubtfull that low of a reading was accurate. Finally, she answered my quesiton about the MRI being so soon from his last round of chemo. She indicated there really is no standard period of time as long as it's over 1 week and less then 4 since his last round. They happened to have an opening, and figured they'd get that part of the protocol over with sooner then later. However, as I wrote yesterday his HGB was too low and he wasn't feeling well. He's feling excellent thi s morning though. The Nurse Pacticioner (I thin Litza was her name) said he looks great! She said this is the marked improvement she's been waiting for with him. He was cracking jokes during the entire exam. He's watching Ben 10 Alien Force now, and even contemplating having something to eat. I wasn't here when he was feeling pretty bad, but Litza and Mike both said he was feeling pretty crummy. She said now that he's looking this well, with continued antibiotics we shouldn't have any worries. Now that everything has stabalized, we start the arduous process of waiting for his counts to come up to 500. It will be at least another 3 or 4 days, possibly more. That's ok, all good news this morning!

Take Care,

Eric

Friday, September 12, 2008

Infection

Rachel, Scotty, Jake, and I made it to Memphis around 6:30 this evening. I arrived at the hospital around 7:45. Mike said one line the infection was identified but the other one they weren't able to categorize it. He's on several different medicines right now, including an anti-fungal, 2 different antibiotics, GCSF, TPN, Zofran, and Rantadine. Mike gave me some good information, but I'm anxious to talk to the doctor tomorrow. I have some questions I'd like answered, including why they moved his MRI up to today (which didn't happen because hig HGB was so low). And, his HGB read at the critical level (6.5) which is way lower then it's ever been. Finally he's on 24 hour TPN now instead of 12 hour....I'm curious why they changed it over. Apparently he was pretty sick yesterday, but hasn't been too bad today. He won't eat right now, but he's on TPN and lipids. His counts will probably be at zero for some time, so we'll probably be here until mid next week. His spirits seem good. I'll update as I learn more tomorrow.

Good Night,

Eric

Thursday, September 11, 2008

quick update

Mike indicated Kevin's cultures were positive for both lines of his Hickman. This means he'll be inpatient until his counts return. Kevin had the exact same thing after his second round of chemo. From what I understand in my short oncology/infection St. Jude education, this is much better then the staph infection he suffered after his third round. He's on two antibiotics and alternating lines. Kevin will be fine. Rachel and I are flying down on Friday, and it looks like I'm staying until Tuesday or Wednesday.

We had the privelage of meeting Kevin's third grade teacher on Tuesday. I feel very comfortable with her, and feel it's going to be an excellent fit. She had a great idea, which is to meet with Kevin prior to him going back to school. She'll show him around the room, and more importantly give Kevin an opportunity to get to know her. Kevin can be very shy (like me I suppose), so I think this will be helpful. It's really important that Kevin feels like he can talk to her, and approach her if something's wrong. Also, this way his first day back at school, he'll at least not feel like a complet stranger to her class. We're thrilled that a couple of Kevin's friends are in his class. That's all for now. I'm update more when I'm down there.

Eric

Wednesday, September 10, 2008

Back in the Chili's Care Center

Kevin is back in the Chili's Care Center. I started packing up the bags as I put him to bed Tuesday night. His temperature was rising above 99. Then he woke up vomiting just before midnight and his temperature was 101. So now we're back on the 2nd floor in room #14 (green and orange room if you're scoring at home ... each room here has a different color scheme).

Just took a long break when I heard Kevin stirring. He vomited again. He's keeps complaining about being cold but his skin is hot. They took cultures and now he's back to sleep. He's already on antibiotics. It's past 2 am. I'm very tired myself and will try to get to sleep.

Mike

Sunday, September 7, 2008

Daddy Mike on His Own

Everyone else is gone--including Rachel for the first time in over 3 months--and it's just Kevin and I here in Memphis. Rachel, Eric, Scotty, and Jake flew out in the early afternoon. Kevin and I spent the rest of the afternoon in the Medicine Room at St. Jude waiting for (then getting) an infusion of platelets and whole blood. It's a long day (2 hrs for a blood match, 1 hour for platelet infusion, 2 1/2 hours for blood infusion) but we passed the time with some Nintendo DS and a couple of NFL football games.

Kevin is doing well, but his neutrophil count is 100 ... pretty much no immune system. So far no fever but we'll be on the lookout for that. Just hooked up the TPN. We'll finish watching a movie then go to bed.

Mike

Pictures Pappy took while he was here

Friday, September 5, 2008

Quick blog

Kevin had a good day yesterday. We had to wake up very early, which neither one of us liked very much. labs went fine. His counts are good, but will fall probably mid next week. His appetite is slowly returning, but will again probably decline when his ANC is at 0. This will be over soon. We pray he doesn't have to return for infection. We're going to be vefy careful with him when his counts are down. Mike and Scotty arrived today. Rachel, Scotty, Jake and I return home on Sunday and Mike will be with Kevin the entire week. Maybe the change will bring us better luck with Kevin regarding catching an infection.

I would like to end this noting an important day:

Eat at Chili’s on Monday, Sept. 29, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude. Chilli's is one of the biggest corporate contributors to St. Jude. In fact the building of which Kevin received all 4 rounds of chemo is the "Chilli's Center"

Tomorrow we have a quick apt. in the medicine room so he gets his GCSF to help stimulate the return of his counts.

Eric