Cancer Sucks

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

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

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

Thanks for checking in on us,
Rachel

full weekend

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

Last Weekend

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

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

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

Things coming together

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

Take Care,

Eric

The Story of St. Jude

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

Continued improvement

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

Take Care,

Eric

A Video for My Boys...Love Mom

Re-adjusting

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



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



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





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



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



Rachel

Next Day

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

ERIC & KEVIN

Kevin's Welcome Home Party Info

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

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

Here are the details:

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


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

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

Thank you for all your kindness through this!

Kevin's Family

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

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

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

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.