The Michigan Herr's Update

Do You Know that January is Manuary - Men Grow Facial Hair Awareness Month?

2011-09-01T08:54:00.009-05:00

The list of the causes we should become aware of just the first month of the year is this long:

1. Awareness Month Awareness Month

2. Be On-Purpose Month, National

3. Bird-Feeding Months, National

4. Celebration of Life Month

5. Creativity Month, International - by Randall Munson

6. Clean Up Your Computer Month, National

7. Constipation awareness month,

8. National Drag History Month,

9. National (Established by Logo T.V. to celebrate the history and role of Drag Queens in the LGBT community.)

10. Financial Wellness Month

11. Get Organized Month

12. Glaucoma Awareness Month, National

13. Hot Tea Month, National

14. Mailorder Gardening Month, National - according to the Mailorder Gardening Association

15. Manuary - men grow facial hair

16. Meetings History Month, National

17. Mentoring Month, National (USA)

18. National Clown College Month

19. Oatmeal Month

20. Poverty in America Awareness Month, National - according to the Catholic Campaign for Human

21. Development

22. Radon Action Month, National - US Environmental Protection Agency

23. Self-Help Group Awareness Month - according to the Mental Health Clearinghouse

24. Skating Month, National - according to the U.S. Figure Skating Association

25. Volunteer Blood Donor Month, National

It was a good idea in its original form otherwise it wouldn’t have gone so viral…all of this monthly awareness stuff. I need to note that I am not trying to belittle the diseases or the causes that groups are trying to educate us on, some of them are important. For example, it’s important for a woman to be able to do a self-exam. Early dection is important to teach the public, it saves lives. Manuary, well… I appreciate the snicker at the idea when I read it on the list, and I am glad whatever group, or person, thought of that one, are not pushing it too hard. (I don’t know if this list is complete, so if your cause is not up there it because I am not being through, it is nothing personal.)

I admit I used to turn off the St. Jude infomericals that were on TV (years ago before Kevin was diagnosed). I tried once to watch one and thought to myself this is too depressing and turned it off. I tuned out what eventually became my son’s saving grace. I’m glad other people didn't make the same choice I did.

I now live in a world where I see other moms post on Facebook about going to their child’s grave to visit, I hear about the newly diagnosed and those who have lived, but also live with the late effects caused by such a terrible disease. This is my normal. I never imagined it would happen to one of my children, that my life would take this turn.

Today I met more newly diagnosed as we waited for my son's follow-up appointments at St. Jude. As we waited for blood draws for labs, we met one little boy the same age of my youngest who was diagnosed with Leukemia on my oldest’s birthday. His mom is 9 months pregnant. My heart just sinks because I have a clue as to how hard the journey is going to be. Treatment is tough and scary. We, parents of kids with cancer, agree to fill our children with poisons, stuff we would normally call position control for if they ingested, to save our children. We walk with our children and hold their little hands through hell, praying they make it out alive.

It is hard not to cry at the end of the day here, despite all the amazing things St. Jude does to try to soften the blow. It is a terrible reality of life. And I hate more people are experiencing it. Cancer knows no social economic status, it knows no one faith or church, it sometimes does single out one community if they don’t protect their environment, but it is completely clueless about race.

This brings me to my quandary. September is National Childhood Cancer Awareness Month. In a way, it seems like one more thing to fill the air with, something that can be easily tuned out or turned off. I used to do it. It was too sad. So I have asked myself what is the point of making people aware of such a terrible thing? These are the answers I have come up with:

1. If you find yourself or someone you know facing cancer with a newly diagnosed child (God forbid), hopefully the stories of others will have stuck and help you make educated decisions.

2. When elections come around, if you understand what is happening (I believe strongly there is a connection between environment and cancer, in some cases) you can vote wisely.

3. This is our future. It might seem like just my kid, but it’s not. It’s one of the leading killers of children. And the kids who live through it are left with late effects.

4. I know of enough kids who have died from the disease, or the diseases they get as a result of treatment. The earlier cancer is caught the better chance a child has. Parents need to be aware it can happen and its typically the last thing your doctor will look for when a child starts showing symptoms.

5. Because I believe in my son’s vision for cancer to someday be treated like the flu; you take some medicine, your sick for a few days and then you go on with life as normal. This won't become a reality with out funding for research.

6. I hate cancer, but I especially hate it when a kid gets it.

Today we also met a man who is participating in a St. Jude survivor research project. He had cancer when he was 11. That was 23 years ago. As we both waited for our appointments in the waiting area for physical therapy, we discussed life and moving on. He was a very handsome well spoken man that looked completely normal with his jeans on. His wife, who sat next to him was bubbly, happy and appeared very supportive. But as he told me his story I learned one of his legs is a prosthetic. He lost it to cancer at the age of 11. Bittersweet, but meetings like this sometimes fill me with hope and sometimes make me so thankful for research and improvements in treatment.

A couple years ago I met a young man who had had the same type of brain tumor as my son, only 20+ years ago. He was obviously mentally challenged. As I spoke to his mom I learned that the dosages that they used to give medulloblastoma kids were much higher then and caused some mental retardation. My son did not make it out without consequence, but nothing as sever as that mother and son have to live with.

I am so thankful for the improvements made to treatment. We must keep moving forward as the invasive cancer rate for children has increased 29% over the last 20 years. Rare? Hardly feels like it to me. I wish it was more rare; I shouldn't be meeting so many people in my own community affected by childhood cancer.

So I will do my part to raise awareness this month. You can tune it out or participate, and there will be plenty of simple ways to participate. I'll be posting the upcoming events soon.

Love and Determination Wins

2011-08-30T12:38:00.011-05:00

I wrote this Nov. 2010 -- It has taken me a while to get this up here.

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Shortly after lunch my ex-husband and I had a meeting at the school to go over our son's I.E.P with his teacher and resource room teacher. His IEP (Individualized Education Plan) was put in place upon his return from cancer treatment. It is a plan that has acted as a vehicle to help him with the cognitive problems and deficits resulting from his brain surgery and treatment. Kevin missed most of 2^nd grade and the beginning of 3^rd grade.

The backstory before Kevin's diagnosis:

Kevin's dad and I started the divorce process when Kevin was 6 months old. We both have had to make compromises to give Kevin the best that we can. We have had to learn to work past hurt feelings and learn to work together in our own ways. It isn't always pretty but we have figured it out. When I married Kevin's stepfather, Mike, he was happy and eager to accept responsibility for sharing in the effort to raise Kevin. We all have our quirks, we all have our strengths and we all have our weaknesses.

So fast-forward to the time shortly after Kevin's diagnosis and brain surgery. I was an emotional wreck, as probably most mom's would be finding out that their child has cancer and requires some pretty scary treatment. I was busy negotiating and learning the hospital system as quickly as possible while trying to still care for an infant and trying to spend each moment I could by Kevin's bedside. Kevin's dad still had work to balance and he did the graveyard shift majority of nights while Kevin was at the Children's Hospital. Kevin's step-dad and I shared daytime duties some overnights when Eric needed a break, typically overlapping. As we fell into our groove, as the shock wore off, one afternoon I watched Kevin's step-dad reading to him and saw how it calmed him down. His aunts read to him when they came to sit by his bedside, his grandmothers, his grandfathers. Kevin starting going through book after book, probably enjoying the familiar voices carry his thoughts far away from a strange nightmare of a situation into whatever make believe world resided in those books.

When we signed the protocol outlining what Kevins treatment would be in 2008, we were also told that the permanent late effects from the cancer and/or treatment could be:

loss in IQ,
hair loss,
growth hormone deficiencies,
memory problems,
learning disabilities,
bladder damage,
sterility,
lung damage,
kidney damage,
hearing loss,
damage to nerves,
damage to brain tissue.

As Kevin went through treatment we tried to continue his education the best we could with weekly visits from a private teacher that St. Jude provided, trying to make it through homework despite his low blood counts, and when the blood counts were high enough and it was safe we went to historical landmarks around Memphis, museums and the zoo. I had a hunch that as we were killing neurons in his brain we could make new connections if we kept his brain active, to continue to challenge him just enough without him feeling pressured and overwhelmed. To Kevin's credit also, he hasn't been a wimp either. He has worked hard to overcome and catch up. He has set backs when his shunt malfunctions and we have to spend more time at the hospital and doctors. His dad and I have spent hours working with him, we've hired tutors. But Kevin also enjoys learning, asks questions, and seems to enjoy having his head in books all the time.

At Kevin's I.E.P. today Kevin's teacher pointed out something I hadn't grasped in my somewhat frantic effort to try to make sure Kevin still had a future – now in 5^th grade Kevin is doing grade level work - amazing! The only thing he requires is a trip to the resource room to take some tests, at his discretion. He is allowed extra time for his tests, but from the report today he isn't requiring the extra time as much. The teacher pointed out Kevin basically skipped all of 2^nd grade and apart of 3^rd and caught up by 5^th grade. That took my breath away….. because he has.

In my score sheet for Kevin, love and Kevin's determination gets a million points and cancer gets 1. Take that cancer!

In my Danish-heritage induced tendency toward optimism, I have to think that if a bunch of adults (ex-husbands, ex-in-laws, new in-laws, family, friends, teachers, strangers, etc.), some of who according to society norms are supposed to dislike each other, are able to shun "normal" and work amazingly well together (I think my ex-husbands dad is one of the best peacemakers I know) to take care of one sick child – I ask what could our country do if we only lived up to our capability to look out for one another?

I also can't help but mention, if we can all put our differences aside to help a child (or children) overcome a terrible disease, I know its on a much larger scale, but why can't our country do a better job of coming together for the good of all? How about for those facing cancer without health insurance? For those who lose their health insurance in the midst of a health crisis?

I see such contradictions in some groups where they are the first to volunteer and help; sometimes those groups are the first to vote down legislation that would allow everyone access to health care and help make our country much more economically competitive with majority of developed countries.

I may see the world differently than most; I have seen kids suffer terribly, I've watched parents lose their children in very painful deaths that can take months-- I almost lost mine this way. I also have seen the amazing power of community spirit.

In honor of what those children have to go through, the late effects they have to live with that for previous generations of survivors has made employment difficult. It is these survivors and their fighting spirit I try to keep in mind as I try to conquer Chemistry and Math (my two worst subjects). I'm well aware life isn't always fair, but that doesn't mean we should make it more difficult for those who have already been dealt difficult circumstances. Kevin was given a soft landing spot in the form of St. Jude Children's Hospital. My wish is more people have soft landing spots in the midst of their challenges, a place to support and rise back - as Kevin has with lots of help, support and understanding from others.

Rachel

All goode

2010-09-12T22:20:00.003-05:00

I know we haven't posted much on here of late, but no news is good news. Both Rachel and I are avid facebook users, so feel free to friend request us there. At any rate, Kevin has been feeling very well. Summer came and went, and unlike 3 or 4 years ago, Kevin was not pleased that his summer vacation came to a close and school began. He's changed and matured so much during his journey. He's so polite and well spoken. Rachel and I are both amazed at how he's navigated this journy and some how became a polite, humble, person who doesn't expect any special treatment. He's in 5th grade now, which is scary because in slighly less then a year he'll be in middle school......ugghhhh!!!!..........But I suppose that's my issue, he's getting older and there's nothing I can do about it. Our entire family is proud of how he's continued to gain strength, and grow (from a maturity and emotional perspective). He's now on Growth Hormone. Rachel or I have to inject him once a day every evening. To be honesty, after everything he's gone through, and with all the experience we have with TPN (nutrition through his hickman) and all his meds, a once a day injection isn't so bad. We've been told the growth hormone won't only help him rocover some lost height, but should also be helpfull towards his overall all energy. I guess people (whether children or adults) who's body's don't produce appropriate growth hormone levels suffer through a litany of symptoms in additon to lost height. Hopefully Kevin's daily injections will help him with more then just growth. Tomorrow we meet with his teacher, the Principal and other staff members. He's a precosious intelligent boy, but radiation/brain surgery/chemo has produced some challenges in his accademic endeavors. It's our job to make sure he's given every possible chance to succeed. ............On another note, Kevin's last visit in late August was the last on his every 3 month protocol. Kevin reached the anniversary of 2 years clean scans after treatment. He now will go to St. Judes every 6 months instead of every 3. We've learned to embrace every achievement small or large during this arduous process. Less school missed, less work missed, and less sleep lost over pending MRI's. ........all around a good thing.

I hope everybody enoyed their summer, and is enjoying the fall.

Eric

June '10

2010-06-12T00:05:00.002-05:00

We just completed month 27 on Kevin's protocol. This number is derived from the time Kevin was accepted into St. Judes on the SJMB03 protocol. This protocol and it's accompanying timelines and benchmarks are important parts of our live's. In the beginning, Dr. Gajjar made sure we didn't look to far ahead....This could be overwhelming, and the objective back then was simply to get Kevin through radiaton and high dose chemo in fair health (relatively speaking) and void of even a trace of a tumor. Our life was all about very short term goals. I'm happy to say that we're looking at long term goals now, and for the average, healthy child this is probably taken for granted. But when Dr. Gajjar talks about things a year away, and the Endocronologist talks about what we should prepare for when he hits puberty.........well it's a modest, yet meaningful milestone. We no longer talk about the next 3 or 4 weeks, it's now about the next several months and even years. We're not out of the woods, as it was made so painfully clear by a family we met. Their child is doing great, but they told us of another medullo patient who's had a recurrence. He's actually about 1 1/2 years behind Kevin in his protocol, and we've met them during 3 of our visits. He's a 3rd grader who is like Kevin in so many ways. He's bright, thin, precotious, inquisitive, and very, very brave. At any rate, his mother eloquently explained to me that Kevin's a role model for their son (I'm so embarassed that at this midnight hour I forgot his name........I'm sooooo horrible with names, but not faces), as they've celebrated Kevin's impressive progress, using it as a benchmark for their own son. It felt so good to be in that place, where Kevin's now a model for success and progress, as opposed to when we were haning on to anything for a glimmer of hope. Kevin's now what Steven, Ethan, and Heather (even though she was only a month or two ahead of Kevin, which is indicative of how our goals were in baby steps for a while). So in a nut-shell, life is good. We have many things to deal with over the course of the next several years, but taking everything into consideration, like Steven, Heather, and Ethan, he's doing incredibly well. I met a lot of wonderful people this last trip, who made quite the impression on me. I'm grateful for so many things, above and beyond Kevin's health.

Kevin's appt. is set for mid July for the Endocronolgist. At that point he'll start Growth Hormone. It's a bit scary, as Kevin hates needles, but it's something we'll get through. Also, Kevin's been doing ver well in school. He's a bit forgetfull in homework (we're working on this), but he's done exceptional on test. Overall, things are great.

Happy Summer!

Eric

Update early 2010

2010-01-23T20:51:00.000-06:00

Once again it's been a very long time. Happy belated New Year to everybody. We're nearly 2 years from the beginning of our journy. I've re-lived the pain quite enough though, this blog entry is about the incredible strides Kevin's been making. Today, Kevin played in his first organized basketball game since he was in second grade (when he was diagnosed). Although I'm an avid sports fan and participant, I've not pushed Kevin back to organized sports. He's been through an awfull lot, and we all wanted to make sure he was physically and psychologically ready. A few months back Kevin told me he wanted to play basketball again. We signed him up and all was set, Kevin would begin in January. In December Rachel receieved a call that Kevin's team did not have a coach. She recommended they give me a call. I said I'd coach if Kevin and his best friend Kyle could be on the same team together. This way Kevin would know one of the other kids. I called Kyle's dad (also a friend of mine) and he quickly agreed to coach with me. Neither of us have ever coached basketball before, although we both played. It's been quite the responsibility with practice every Thursday and games every Saturday, but it's really brought me joy. It was quite clear during the first practice that Kevin was physically far behind the other kids. He looked like somebody who simply hasn't played organized sports before. What he didn't look like WAS A KID WITH CANCER. He's enjoyed this adventure, and we've stayed after practice to work alone. He's in physical therapy which hopefully will eventually help his strength, endurance and coordination. Kevin last played on an 8 ft basket, in the 4th and 5th grade league it's a 10 foot hoop. The first practice he couldnt' even get the ball to hit the backboard or rim. Now he's improved dramatically and making the occassional shot. We played today and won. Kevin was so happy! He played three 4 minute shifts (each quarter is broken into two four minute periods). Kevin enjoyed playing and I'm certain will continue to improve. A couple of parents know his medical condition, but most don't. This is exactly how Kevin wants it. Gtuy and I had such a great time coaching the first game, and even met at my house more then an hour before the game to go over strategy and line-ups. Kevin didn't even care that he's behind and certainly right now the least athletic on the team......He knows what he's been through, and appreciates what he was able to do. No special treatment, no extra breaks, he ran up and down the court the best he could (often losing the guy he was supposed to guard), but enjoyed every minute of it. We won a close game in the final minute and all the boys were giddy. Kevin, Jake, Kevin and I celebrated at DQ after the game. On the medical front Dr. Gajjar is out of the country and Kevin's next appointment has been moved to March. They didn't seem concerned, and said if it made us feel comfortable we could get him an MRI at Detroit Children's Hospital. Rachel and I still haven't decided yet, and aren't overally concerned about it at this point. He's been feeling well and improving in almost all areas. He does have some post radiation cognitive delay side effects, which sort of mimic ADD. However his writting has improved greatly, and he's still getting mostly A's on his test. Well it's Saturday night and I have plans. We enjoy reading about our st. Jude friends on their blogs, and both look forward to our next visit.Eric

Kevin's Halloween Update

2009-10-28T19:32:00.002-05:00

I know it's been far, far too long since either Rachel or I have written an update. No news is good news though, right? Kevin's been doing very well. 4th grade is tough, and he (we) struggled with the tougher curriculum, but he (we) have all adapted and Kevin has gotten A's on his last 5 test. He's still behind in writting, but his attitude towards writting had done a 180, and that's a big step. He's also enjoying Cub Scouts, which is also is a lot more involved now that he's a WEBLO. We have very little free time, but that's ok, he's enjoying everything.

We've finished up our schedule here at St. Jude. We arrived Monday evening, and had our last appointment this evening at 4. The shuttle is picking us up at the Grizzly House tomorrow morning to take us to the airport. This was a short but productive visit. MRI's were clean, which obviously is our primary reason for coming here. Each and every visit gets just a little bit easier, in terms of the anticipation of the results. Kevin's now 53.6 LBS, which is a 16 LB increase from the end of last summer, when he had just finished up chemotherapy. This not only made me very proud, but the oncologist, Nurse Practicioner, and Endocronologist were all thrilled that Kevin's at a healthy weight finally. He even has a little belly. He also grew 1.2 CM since last visit 3 months ago. This is still on the slow end of typical growth for his age, but he just recently started gaining weight, which is a good sign for growth overall. Between now and January they'll decide whether or not they do the Growth Hormone Test. We recognized a few faces from recent visits, and even had the pleasure of seeing Leia and her mom. Leia is a lovely young girl who was at the Ronald McDonlad House the same time we were. Those were the orginal families we met, when we were the most scared, vulnerable, and overall unsure. It's also were we met Mary Kate, Will, Heather, Nellie, Sara, Aleen, and so many other kids and parents we'll never forget. A quick count in my head and there's more then 10 I can think of we spent time with who are no longer with us from the RMH days. I'll always remember those first few dinners at RMH, where there's a large dining area were all the family's dine together and bond. At any rate, this place will always be a part of us. I wish none of our kids were ever sick enough to be here, but once they were, I feel blessed this place was where we all ended up. No Beal Street, no Target House, no Children's Museum, or anything else off campus this visit. But Kevin did get to see his friend David Tuesday night. They played Yu-Gi-OH for hours on end. They had a really good time, and have a special bond from when Kevin was here for several months. I always feel nervous the week before coming here, but always feel whole once our visit is completed. Take care all, and Happy Halloween!!!!

Eric

Clean Scans

2009-08-02T19:21:00.002-05:00

We got back from Memphis yesterday afternoon. As expected clean scans, which I'll never take for granted. Dr. Gajjar did not feel comfortable doing the lumbar puncture (spinal tap), because he was nervous doing so when he had his valve replaced in his recent shunt surgery. He said the flow is noticably different with the new valve, so he's going to wait until next visit for the LP. All of the medical staff commented on how good he looks, though. We were pleased to see a couple families we know at St. Jude. We saw Regina, who bless her soul, is still involved with St. Jude after her daughter's (Mary Kate) passing. It was great to see her. We also saw Chris's parents, an ALL patient we got to know at the RMH. It's always great to see people we shared housing with at St. Jude.

On another note, it's looking more and more likely that Kevin's going to need growth hormone therapy. They're scheduling him for the official testing next visit. It involves putting him in a neo-Insulin shock.. While he's in this state, they're going to be testing how his body responds. There should be certain hormonal and blood responses to this, which would be lacking if he's really low on certain growth hormones. The Endocronologist assured us that in a controlled setting he'll be safe. They said he may pass out like diabetics do when they're blood sugar/insulin is off. But he won't be in danger. Everything will be fine, and we'll cross that bridge next trip.

Yesterday Kevin had a sleepover with his best friend Kyle. They also played all day today. We're thankfull for the Todd family. They never forgot Kevin when he was gone, and encourage the boys to spend time together while their schedules match. For whatever reason Kyle really brings out an energy in Kevin that's such a pleasure to see.

I hope everybody is enjoying their summer's.

Eric

Mid summer update

2009-07-19T21:19:00.002-05:00

It's been a few weeks since Kevin's surgery now. Kevin's been doing quite well. He's been enjoying the summer, and seeing his many friends. Today he spent a few hours with his friend Kyle (neighbor boy who's same age and lives a few houses away). They were riding bikes, and rough housing in the basement with light sabers and any other weapon they could get their hands on. Kyle seems to really bring the energy out in Kevin, which we all appreciate. Tomorrow Kevin goes to Cub Scout camp, which will include a lot of fun activities (day camp). He's really excited about it, and many of his friends will be there. Our next St. Jude visit is coming very soon. We fly out a week from this upcoming Wednesday. Seeing that they did CT scans before and after his surgery I'm very optimistic his upcoming MRI's will be clear. The MRI certainly is a much clearer and more magnified picture then CT scans, so nothing's a given....Saying that I'm feeling optimistic about the upcoming trip. Kevin's appearance is good sicne the surgery. You can still tell were the incision was (his hair's very thin their), but he's unbothered by it. It's to the point now that his friends don't even bring up the word "cancer" and that's all Kevin ever wanted. On a personal note I'm sleeping better, and still trying to find my path in our post St. Jude's world. Kevin and I have suffered a big loss, in that my engagement has ended. Kevin was really down for a good week or so (he really was close with Tabby, her 10 year old daughter). I couldn't help but feel terrible guilt, as he was really down for a while due to grown up issues out his control. He still misses both my ex-fiance and her daughter terribly, but he's improved significantly. I on the other hand am still stuggling, but this site is about Kevin not Eric's soap opera of a life. At any rate, all of us are going this time around to St. Jude (Rachel, Scotty, Jake, myself and of course Kevin). Memphis is still a second home for me, and I'm looking forward to going back. We're going to make sure (predicated on the MRI's) to have a good time, and go to some of our favorite places (Beal St., Pink Palace, Zoo, BW's, and hopefully the cheescake restaurant). I want to really thank Rachel, who's really helped me pick up the pieces from my recent events. She's a great mom, and the best ex-wife a guy could ever ask for. Kevin, Mike, the kids and I are all lucky to have her prominantly in our lives. I hope everybody is enjoying the summer.

Eric

Beach Vacation

2009-07-08T06:48:00.002-05:00

We were fortunate to be able to go on our annual family beach vacation. Kevin really missed it last year and during chemo when Kevin was really sick we promised him two beach vacations this summer because it is something he enjoys so much.

We drove from Michigan to northern Virgina where we stayed with Mike's sister's family and the kids enjoyed a sleep over with their cousins who are close in age to them. The next day we headed out to Maryland where we had lunch with my sister's family and then headed up to Pennsylvaina where we had dinner with Mike's grandparents, his uncle and his family. Then headed back to the Maryland and over to the Atlantic coast. We got to enjoy almost a full week of beach time. The weather was fabulous , which is unusual, there is typically one rain day. We have been going on this beach vacation (except last year of course) for 7 years.

Kevin enjoyed making sand castles, reading and flirting with the ocean's edge. He isn't strong enough for the waves of the ocean yet.

Scotty spent lots of time swimming in the ocean. And Jake loved putting his toes in. Jake even sliped away but fortunatly someone found him quickly and returned him to us. While swiming in the ocean we also saw a small brown shark come close to the shore (while we were swimming close by). We also got to see a beach rescue on the 4th. There weren't that many people at the beach until the 4th of July, then it was packed.

Overall it was a much needed vacation for all of us.

Rachel

Healing and adapting

2009-06-25T01:37:00.002-05:00

Many of you know this through phone calls, Facebook, and emails, but Kevin has been feeling much better the last 2 1/2 days. It seems the surgeon's gut was right. The prior shunt's flow was definitely slower due to the cap in the valve being clogged up. After replacing the cap, his flow sped up and his body was reacting to it. Now it appears he's adapted to the proper flow, as he's been up and around and no longer nauseated. Dr. Sood is somebody I have a lot of respect and appreciation for, to say the least. He did Kevin's two major surgeries, which was the inital external shunt (was done immediately to alleviate pressure in his brain due to hydrocephelus) and the tumor resection. We insisted he was the surgeon working on Kevin last week. He was kind enough to call both Rachel and I back on fathers day evening (a day he had off) to answer all our questions and concerns. We're very thankful to have the combination of St. Jude for protocol and Dr. Sood for surgery.

Also, today my sister's close friend Tracy Filak chaired a fundrasier at Black Finn bar and grill for St. Jude. Was a good time, and obviously a great cause. She did a great job with the event.

In closing I'd like to thank Betsy and Tabby for coming down 90 minutes from Saginaw to be with Kevin the evening before, and the day of surgery.

I may not post again for a bit, so I hope everyone enjoys the 4rth of July Weekend.

Eric

Recovering period

2009-06-22T00:05:00.002-05:00

Kevin's had some pretty rough side effects since his surgery. All he wants to do is lie down. When he moves he quickly becomes nauseated. Rachel brought him in on Friday, but the shunt was in working order according to CT Scan and a Shunt Tap. However since then, he's continued to get more and more tired. I saw him today for Father's Day, and after not seeming him since Thursday he looked beyond fatigued, and laid down on the couch, even eating on the couch for Father's Day. No big deal, since I sat there right next to him on the couch and ate with him. We've been in touch with both his Surgeon and St. Jude. The surgeon is saying there's a good chance it's a flow problem, since the failed shunt was flowing much slower. The new quicker flow may be making him feel sick, and hopefully will subside by mid this week. St. Jude wants us to be proactive (which we were already on Friday). So Rachel's keeping a close eye on him, and if he's bad tomorrow she's going to bring him in. I'm pretty hopeful it's what the surgeon said, but you can't be too careful.

Shunt Revision - Round 1

2009-06-17T10:29:00.009-05:00

Kevin and Rachel (Dr. Mominator) before surgery in the Operating room.

{I am saying round one because this is probably not the last time the shunt will need to be revised before Kevin becomes an adult. But shunt failures are serious and life threatening so it is not to be taken lightly but this feels so much more manageable than cancer to me.}

Yesterday I called the Neuro Surgeon ( who removed his tumor last year) to tell him I was concerned Kevin's shunt was beginning to fail and listed his symptoms like nauseated on and off, having small bouts of throwing up and headaches on and off. Not headaches like when he had a tumor though. He was getting car sick and he doesn't normally get car sick. Dr. Sood said to bring him into the office as soon as I could. Shortly after we arrived at Children's Hospital yesterday they did a CT scan and x-rays but everything looked normal to the nurse who was evaluating him. On the CT scan it showed his right sinus cavity full of fluid so she thought the headaches could be from the sinuses and just as she was getting ready to send us home with the all clear when Dr. Sood just happened to get out of surgery and walked by the room we were in. He pulled the nurse aside outside of the room and upon his return felt Kevin's shunt on top of his head and ran through the symptoms I had talked to him about earlier in the morning. He said it felt to him that the shunt was at the beginning stages of failing because it wasn't popping back up after he pushed on it the way it should. Same thing I had noticed at home. He sent us home telling me to call if he stays nauseated.

The whole way home Kevin was nauseated. I called the Dr. before we even pulled into the driveway to tell him I wasn't comfortable at all just letting the shunt fail completely when we can fix the problem early.

Dr. Sood, as normal, was great about returning my phone call quickly and said he would put Kevin in for surgery the next day.

Kevin is already a man in so many ways. He has handled this with maturity way beyond his years. Right now I am sitting next to him in the hospital bed and just a few minutes ago he turned to me and said, "I love you mom. Thank you for taking me to the hospital and paying attention that something was going wrong with me." I am so honored to be his mom.

Thank you for all the prayers and well wishes. As difficult and scary as this whole health scare has been the last year and a half, there have been many silver linings, many amazing blessings, and many opportunities to see the hand of God working in our lives. Sometimes bad things happen and if we are lucky we come out better for it.

Much love,
Rachel

Kevin with Grandpa an hour after surgery today.

P.S. I forgot!! The surgery went well. It took less than an hour. Kevin now has a very small wire coming out from the shunt area monitoring the pressure in his brain to make sure the shunt is working correctly. Kev woke up in a pretty good mood for just coming out of anesthesia. He has been up watching TV, already read 2 books and trying to eat but his taste buds are a little off. He will hopefully get out of the hospital tomorrow afternoon/evening. He is certainly low energy but is in good spirits. He has to come back next week to get the sutures out and for a check up.

Been a while

2009-05-18T21:54:00.002-05:00

I apologize for Rachel nor I updating the blog sooner, but no news is good news, right? Kevin has been feeling quite well. He has a great appetite, he seems to have a good amount of energy, and has picked up quite the proclavity towards hitting a baseball. I talk to Rachel often, and her and I are on the same page. We're still adjusting to our new lives, the after (traumatic brain tumor surgery and treatment) portion of our lives. I can honestly say I'm not the same person, nor am I close, compared to who I was 16 months ago. I might as well be named a different person, and I know talking to Rachel she feels the same way. We have nothing to complain about as Kevin is doing about as well as he could possibly be doing all things considering. He definitely is to the point he doesn't like his cancer to mentioned in conversations with others. I've had some sleeping problems, and we'll just say it stems from some post traumatic stress, but Kevin on the other hand wants that world to be over. God Bless him, so do we. I won't lie and say he's 'perfect. He still get's quite emotional when he feels the need, and is having some significant challenges with his writting. All in all, out of scale from 1 to 10 of what we hoped for, he's an 11. he won't talk about his cancer, but he does like to talk about St. Judes, so that's good. He realizes how special that place was for all of us. Our family is all doing well though, and Jake is growing, and growing. He's talking more, and pretty much doing all he can to keep up with Kevin and Scotty. Kevin's not growing a whole bunch, but the combo of a brain tumor, radiation, and chemo will do that. We may cross the growth hormone bridge when we get there. In closing, we were'nt close to Mary Kate like so many other were at the Target house, but not a day goes by that I don't think of her. Her passing was particuliarly hard on me, since she was such a strong virbrant young lady. At any rate, things are good, and we hope all has a happy and safe Memorial 'day Weekend.

Eric & Kevin

Finishing up our visit

2009-04-09T09:37:00.005-05:00

Today's our last day of appointments at St. Jude. Everything is going well. Most importantly his MRI was clear! Also, it was Kevin's first time doing the MRI without sedation. We are extremely proud of him! He watched a movie and didn't complain once. It's a little odd being here without knowing many of the patients. They're all new names and faces, but we've met some nice people. Overall a very good visit!

It's that time

2009-04-06T08:37:00.002-05:00

Tomorrow, Kevin, Rachel, Jake and I make the journey back to Memphis. We've all grown to love the area and the people so much, but obviously it's hard to get too excited knowing the MRIs lie ahead. Kevin's been feeling great, so I'm going to take the positive mind set that we'll hear the feedback we want to hear following his tests. This past week's been tough psychologically on the entire St. Jude family, as Mary Kate Rushing passed. Regina, Mary Kate, and Alyson were pillars of the St. Jude community. We saw Mary Kate each and every day at the Target House, more times then not filling the room with her vibrant personality. I still get phone calls and emails from my St. Jude's freinds. I truely believe we've made friendships for life down there. Hope all is well with everybody. Please have a blessed Easter Weekend!

Eric

Reach the Day - June 22-23, 2009 - Washington, DC

2009-03-31T20:31:00.001-05:00

Reach the Day - June 22-23, 2009 - Washington, DC
As many of you know, Reach the Day is an event sponsored by CureSearch, the largest childhood cancer advocacy group in the country. CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through its mission to cure childhood cancer. Reach the Day is an annual event that brings the childhood cancer community together in one place on one day to raise our voices for all children with cancer and for those children who no longer have a voice. CureSearch arranges for personal meetings with Congress, giving you an opportunity to speak with one voice to raise federal funding for research. You can learn more about Reach the Day here.

My fellow cancer warriors, let me know if you are interesting in joining me there!

http://www.curesearch.org/

St. Jude Friend

2009-03-30T08:06:00.003-05:00

Today is sad day for our St. Jude's family. Mary Kate lost her battle with Leukemia, and has earned her wings. She was a year older then Kevin, and stayed at both the RMH and Target House the same time we did. Please pray for her mother Regina and sister Alyson, who obviously are in an enormous amount of pain. Mary Kate's father also lost his battle with cancer a few years ago.

Eric

Rolling along

2009-03-29T13:28:00.002-05:00

It's been almost 3 weeks since our last post. For me that's a good thing, as I often use this forum to get out some of my thoughts and concerns when things were rough. Kevin's been improving in all areas of his life. His writting has improved, as has his endurance and strength. His fine motor skills are probably the thing that looks (for now) to be the longest term of the side effects. He still has challenges with things that most kids his age take for granted, such as buttoning his pants, twisting off bottle caps, or even cutting his food. He's trying in all these areas, and if he has time he can usually complete the task by himself. His writting has improved dramatically, so for that we're pleased. He's been making friends at school, the neighorhood, and through both Rachel's and my friends children. His hair has gone from the Chia-Pet looking style, to the softer combable style that most kids have. It's still uneven in some areas, but looking at this point if you're a stranger looking at him, you'd never think he's been through 9 months of intense radiation and chemo. He's still a bit sensitive and reactionary, but he was like that somewhat before his ordeal. Our next trip to St. Jude is on April 7th. It sounds like it's just me and Kevin at his point, which I'm a bit torn about. It will be nice to have alone time with Kevin in Memphis, but as far as the MRI's themselves it's always been nice to have somebody there for support. We'll see what develops as the date gets closer. For the most part Kevin and I are both looking forward to our trip back to Mephis. I also wanted to say we enjoy being kept abreast of all of our St. Jude's friends through their blogs.

Eric

Monday at 99.5

2009-03-12T14:58:00.004-05:00

Our local country station is getting ready for a Make A Wish Radioathon and asked Kevin if they could record his story. Kevin did a great job. But what was even more surprising is how interested he was in the DJ's job. Kevin loved playing with the mic and watching the waves go up and down on the monitors as he spoke. The DJ was a great sport about letting Kevin check out the equipment. I was told Kevin's story is suppose to air April 9th. I will let you all know when I get the MP3 copy.

Rachel

Fun Sunday

2009-03-08T18:20:00.002-05:00

Kevin and I finally took Coach Izzo up on his offer to come to a Spartan Basketball game. We had a wonderfull time. I've never seen Kevin have so much fun at a Sporting event. We were 6 rows behind the Spartans Bench, where family members of the players primarily sit. We could specifically what Coach Izzo was saying when he was yelling at the refs or his players....was kinda funny. Kevin was into each and every play. In fact I was looking through the program, and he got mad at me and told me to pay attention to the game!!! My sister and her husband saw on us on TV when the camera panned to the Spartans bench. Afterward we had took full advantage of the passes to the lockeroom area. Kevin was a bit shy, but did get to see most of the players. He also got to talk to Coach Izzo again. I took a picture of Kevin with the Big Ten Championship trophy in the lockeroom. I kept asking him if he was ready to leave, and kept stating he was having too good of a time.

Other then that everything has been status quo. Kevin continues to improve in school, and has seen his energy return to near normal levels. His coordination is still a little off, but that was never his forte anyway. We had one ice day on Friday, and we took full advantage. I picked Scotty and Kevin up from school then we got ice cream, then went to the park, where Rachel and Jake met us. Everything is going well, and we go back to St. Jude on April 1st.

A Night of Hope

2009-03-01T22:33:00.003-06:00

We were honored to represent St. Jude families at the Night of Hope at the Ren Cen Saturday evening. It was a beautiful event that raised alot of money for St. Jude. Everyone was incredibly kind and open to meeting Kevin and Kevin did well until about 9 pm. They had us speaking at 9:30 pm and I think by then Kevin was ready to head home. He is used to going to bed at 9. Eric did a good job telling about Kevin's inital diagnoises, I handled arriving at St. Jude and radiation. And Eric closed it out.

It was beautiful and what an honor to be surrounded by people who give so much for families like ours.

Rachel

Busy Weekend

2009-02-22T21:56:00.004-06:00

We enjoyed a fun weekend with Aunt Becca, Uncle Mike and Liam.

Kevin is writing his first big report in his school career. What a lot of work that is! Kevin HATES writing. It is like pulling teeth to get him to sit down and work on it. After getting him to work on it, he constantly asks, 'when can I be done?' and tries to negotiate his way into shortening the time he has to spend spend on it. But I can see his handwriting improving as we work on it.

Scotty and Kevin are at that wonderful phase of CONSTANTLY trying to get on the others nerves. I don't know how many 'he pushed me first' arguments I am breaking up a day. Fun, fun, fun!

Scotty has been saving very diligently for one of those Air Hogs remote control cars that can drive up the walls and ceiling. I have been really impressed because he just donated all of his birthday toys to St. Jude's treasure boxes. They were empty again when Kevin, Eric and I went in January. But none the less, Scotty saved and saved to get one of those Air Hogs cars and when he only had two dollars more to go he asked me if I would give it to him. No way, no how, but I told him he could earn it by doing something above the normal chores that are expected of him. One of those things was helping me fold the laundry that was sitting in a basket near the couch. I went to go make Jake something to eat and returned to find all of the towels already neatly folded!!!!! At first I was in disbelief. But there wasn't anyone beside me, Jake, Kevin or Scotty home. Kevin, I adore him, but clearly has no clue how to fold. So now I am thinking JACKPOT!!!! I hope he needs to earn more money soon. I have clean clothes in the dryer. Now if only one of my kids would pick up on putting the clothes away. Kevin is good with cleaning up toys. Maybe Mike will pick up on making dinner and life would be good! ;-)

Rachel

Be a Hero, Become a Donor

2009-02-16T14:42:00.000-06:00

Make an on-line slide show at www.OneTrueMedia.com

My Favorite Recent Movie

2009-02-03T04:07:00.004-06:00

Weekend

2009-02-01T18:45:00.006-06:00

Quick update regarding all the aforementioned (prior post) activities this weekend. Kevin did a marvelous job with his joke telling at the school's variety show. The crowd, parents and kids both laughed throughout. Of all the times he practiced, including rehearsals, his best performance I saw was the big one. The Pine Wood Derby went well too! He didn't place, but his car was plenty fast, finishing 12th out of 30. The highlight for him was that he won 1st place in one of his heats (6 cars race every heat). This was his first derby, and he really enjoyed it. Scotty's b-day party seemed to go well too. Kevin really liked the cartooning artist they hired. I'll make sure to order some cartooning booklets from the guy. Scotty had plenty of friends there, and eveyboy seemed to have a good time. Finally, Kevin got his report card, and he did very well! I think his teacher may have been a little generous (or forgiving, perhaps) with his writting grade. However, he is making solid progress in that area too, according to his teacher, tutor, and writting resource specialist who sees him 3 times a week.

I hope everybody is enjoying the Superbowl. I played some cards during the day, but decided to go home and watch the game quitely by myself (Kevin's at his mother's house). I think I was ready for something low key, after such a busy weekend.

Take Care,

Eric

Almost a Year Later

2009-01-30T05:11:00.024-06:00

Tomorrow marks the one year anniversary of the day I called our pediatrician yelling at the poor receptionist. I told her loudly,firmly, with tears, that Kevin could not wait two more weeks for an MRI. I was in the car on my way to meet my boss (to prepare to return to work from my maternity leave). Kevin's 'headaches' were eating me alive. The pain was unbearable, having to watch my son suffer was too great. I knew something was terribly wrong with Kevin, I just didn't know what. I called my friend Carole in tears and asked her to go to the ER at Children's Hospital with me. I needed someone strong there with me as I demanded for my son to get an emergency MRI. The week before they had sent us home telling Eric, his dad, and I it was migraines, 'give him some Tylenol'. Carole had lost her husband to a brain tumor and she was the voice that kept reassuring me, over the days leading to this,that something was wrong with Kevin. I wasn't crazy.

Kevin never had the sudden headaches when he was with Eric or his mom. I really thought I was doing something wrong or seeing things. That is, until we had friends over for movie night and Carole saw Kevin have one of his headaches. It took me a couple of days, but finally, I said enough was enough. I pulled Kevin out of school. I called my friend Allison and asked if she could take Scotty home from preschool and keep him until Mike got home from work. Within an half an hour, I picked Carole up and headed to Detroit with 3-month-old baby Jake in tow. After 4 hours in the ER, Carole and I convinced the ER doctor to get a neurologist team to come down and evaluate Kevin. They saw one of Kevin's sudden headaches first hand. I think they knew right away, but didn't say. They just ordered an immediate MRI. Unfortunately, we had been letting Kevin eat while in the ER room, so they had to admit him and do the MRI the next day. The residents as they were admitting Kevin were back to saying, "oh, its probably nothing". I felt like I was wasting every one's time, but my son was more important than my sanity status. The next morning they found a golf ball sized tumor at the back of his brain. I will never forgot the doctor who had to tell us, "your son has a tumor, we have to do emergency surgery because the pressure in his brain is dangerously high".

We didn't leave that hospital for almost 3 weeks. But Kevin did leave Children's Hospital walking, talking and with little obvious consequence of the brain surgery. The 5th floor nursing staff along with Dr. Sood's work were amazing. They were all very kind to us, incredibly understanding, and amazing with Kevin, who can be like an old grumpy man in his little boy body at the worst of times, but who can blame him? Kevin had to be poked at all day and night long. After his surgery, Kevin had a lot trouble walking and huge balance problems at first. But once he learned there was a library on the same floor as his room he moved from a wheelchair to walking with some assistance within a week (his head still had a tube coming out of his brain that drained into a bag on an IV pole he had to take everywhere with him). Kevin's determination to be normal and not let this hold him back is amazing.

I have to stop here because I have this powerful memory of Kevin, in a hospital gown, with blood still stuck in his hair from the surgery, and just barely enough balance to sit in a chair. It was dark outside, so probably evening, and our family was gathered around Kevin. We were surrounded by a ton of little stuffed animals and gifts family, friends and strangers had sent. Someone had just brought in the cards his 2nd grade class had made for him. There my son sat, in a chair maybe for the first time since his surgery, reading the cards his classmates made for him. I will never forget the smile I saw as he read the cards. One of the little girls even signed her name with 'Love, so-and-so'. I saw Kevin's spirits rise in that moment. Those little handmade cards meant the world to him. They gave him power I couldn't, the doctor's couldn't, his dad couldn't. Only his classmates could and did.

Within days of Kevin coming home from the hospital I was racing around collecting Kevin's medical information and tumor samples. By the grace of God the right moms stepped in and helped us get Kevin into St. Jude. (Not as easy as you would think to get into if you don't have the support of your local oncologist.) But St. Jude offered a protocol with better survival rate than the protocol offered by Children's. Plus, all of their equipment is used only on children there. I had less than 72 hours to make arrangements for Scotty, pack up baby Jake, Kevin and myself and head to Memphis - through a ice storm of course. Thank Heaven, my parents made the drive with us at the last minute.

St. Jude was the right place for Kevin and what an amazing place. The doctors and staff are great, but what I think really makes St. Jude amazing is all of the contributors who support St. Jude. I think it is awe-provoking that a hospital can run on donations, with the average donation being $23. Yet, their daily cost of operating the place is over a million a day. Those who do have insurance, they do ask the insurance company still to pay for treatment and some do and some don't. We didn't have the issue with bills like we had at Children's Hospital. I think the story of Danny Thomas is so inspiring. The whole thing says alot about the society that we live in. I feel we too often sell each other short. We are all capable of great, amazing things. We do it everyday, for some people it is because a commercial brings us to tears and they open their checkbooks and give $23.

So much has changed over the last year, and how much this year has changed me as a person. I have experienced young children suffering horrible deaths, I have lost a couple of my neighbors to cancer too. The first day after arriving in Memphis my step mom's dad passed away from a freak accident golfing non the less! I look at life so differently now. I have trouble taken things for granted and find too often I speak my mind, which is hopefully something I will get back under control but something I needed to help get Kevin the best care I could.

Last night my friend and neighbor Bonnie called. Last year, when everything was going on she stepped up and told me not to worry about Scotty she would take care of him while I was gone with Kevin and Jake. Scottys life got turned upside down last year too. He became a frequent flyer and knows just want to do to through security. He has lived along the Mississippi River for a month in the summer and almost every weekend. Baby Jake will probably not remember living at the Ronald McDonald House in Memphis, nor the apartment we eventually rented in the south part of town. He probably will not remember the long days, weeks and months at the hospital. He probably will not remember the nurses who held him while I comforted his big brother. He probably will not remember Kevin throwing up after radiation each day nor his screams each time he had to be poked. He probably will not remember each night that his mom had to prepare Kevin's TPN and pretend to be a nurse as she flushed his big brothers lines and hooked up the bag of nutrition while some new relative or friend of the week that came to help during chemo try to put him to sleep. But I can see already that Jake manifests the love that surrounded us during this time. He is the first to greet anyone at the door with a hi and a big toothy smile. He is the first to get a look of concern and give a hug when he sees someone sad. He gives hugs frequently and love often.

A year ago I had no clue what was going to be expected of me and I am sure Mike and Eric feel the same. A year ago I didn't know what Kevin was going to have to try to live through. But we didn't have to face it alone and I appreciate that.

So last night Bonnie calls me crying. She tells me she was at last nights dress rehearsal for the school Talent Show. She saw Kevin get up there on stage and spouting off a bunch of silly kid jokes with a bunch of fuzzy hair sprouting on top of his head. She was crying because she was happy he is doing so well. It is a miracle he is able to walk up there himself, remember the jokes and walk off. It is amazing he is here with us today. I think it is because of the great team that assembled around Kevin. It is the friends, old and new, who prayed for him. It is the friends of friends, the friends and family that sent cards and care packages. It is the amazing hospital staff. It is a school community that rushed in at a moments noticed. It is the moms who helped Scotty get to and from preschool for me. It is the family members who flew out to Memphis to help. It is the friends who used their vacation time to come out and help. It is all the people who attended fundraisers so our family could have a safe place to stay in Memphis and be together, and not lose our home. Even though it was harder than I ever understood cancer treatment to be, this all is still a very profound experience that will take years for me to digest.

If Kevin had gotten this 25 years ago we probably would have lost him by now. Since there is little to no survivors of medulloblastoma from more than 20 years ago we don't have a clear idea of what the future holds for Kevin. But he is a shinning example that prayers do get heard (and do sometimes go our way), that love from family and friends can heal .

So tonight, on the eve of this anniversary, Kevin with his friends and classmates, is back to being the sometimes awkward but kind and slightly mature for his age boy that he is; he will be up on the stage surrounded by part of the community that lifted him up and hopefully making them laugh.

And most importantly not thinking a thing about cancer, but just getting through his lines.

Thank you for blessing our lives.

Love,
Rachel

Busy Week

2009-01-27T12:41:00.002-06:00

This is a big week for Kevin, as well as his family. Friday is his Variety Show performance in front of the entire school and parents. This will take place at the Walled Lake Northern auditorium. He has a 90 second routine of which he's telling jokes. I can't wait to see him. This is a signficant moment, as it's one day shy of 1 year since our family was crushed with Kevin's diagnosis. I don't like to re-live the moment, but since the year anniversary has been coming upon us, I can't help to revisit that terrible day. Not much can be more devastating to a parents ears, then being told the scans show your son has a brain tumor. I personally cried so much the first two days, that I have not cried since. Life will always be divided before January 31st 2008, and after January 31st 2008. The good news is, every day there after has been a blessing, filled with positives. Yes chemo was terrible, yes the living situation wasnt' ideal, but we were filled with hope (St. Jude's motto) each and every day since his surgery. Dr. Sood who's also a professor at Wayne State University will be getting a thank you email from meon the 31st, that's a certainty. Kevin continues to improve, and as I said 1 year from the grim realization that our son has a brain tumor, Kevin will be walking on stage, head full of hair, to deliver his corny kid friendly jokes to a large audience. Even if he freezes and runs off stage, I will be so proud of him. Saturday will be the Pine Wood Derby. This also is a big day, as last year Scotty and I went in Kevin's place, as he begun his long stay at DMC, which included 3 surgeries and plenty of recovery. The participation trophy Scotty and I brought to Kevin's hospital room, meant the world to him. I think the fact that Scotty was there in his place made Kevin feel better about it. This year Kevin will get to enjoy the whole experience! Finally, after the derby it's Scotty's 6 th birthday. Last year, Kevin missed Kevin's 5th birthday party. He was so upset! The first few days was really the only time Kevin was depressed, which nobody could blame him. Kevin thought, he was getting the MRI then going straight to Scotty's b-day party. As we all know, it didn't exactly turn out that way. But now one year later, Kevin will enjoy Scotty's 6th Birthday party. I'd also like to thank Michigan Chiller's and National Chiller's author, Jonathan Rand for sending Kevin 2 signed, not yet in stores, books. Kevin is so proud of them, and actually insist on keeping them in bed with him while he sleeps. Where we are this year, this week is certainly a much better place then this time last year. For that we are incredibly thankful!

Eric

Faith, Hope, Civil Rights and Cancer

2009-01-20T12:57:00.012-06:00

Today our nation celebrates its first African American President. As I watched the Civil Rights activists (white and black) from the 1960's being interviewed on TV I was struck by their faith they held on to that this day would come; that a son of a white American women and a black Kenyan man can be president of our country. It is with hope I think my sons will grow up in a color blind society, where a person's actions count louder than skin color; where we are judged for our own words and our own actions and not where our parents came from nor the color of their skin. It is a similar faith that the 1960's civil rights activists held that I as a parent who has watched my child battle cancer, who has watched other parents lose their young children to cancer, have that one day we will understand what causes these horrible cancers and be able to not just treat cancer, but prevent it.

As I research my family, the family heritage my children; as I learn the stories of those from who we came from; some of who came over on the Mayflower, some who were apart of the Massachusetts Bay Colony, who have fought in all the American Wars, and a few made the pioneer track west to settle Utah, Arizona, Idaho and California; it is through faith that they would be free and belief that their hard work would make this a better place for their children that brought some of our ancestors to this country; it is their hope and faith that lives on through us that I know that America is a place that is capable to greatness if we choose to rise to the occasion.

I pray that anti-cancer activists can make the same difference, with the same passion and convection, as the civil rights activist started so long ago.

On a seperate note, here are a few photos from this past weekend which was a wonderful gift from Great Wolf Lodge gave our family; the gift of a weekend away and one of the best anti cancer drugs (happiness) we know of. I can't say enough good things about the staff up in Traverse City, they seem to truly understand service and do so with a relaxed smile. It is an amazing place. And what an example they have set in their generosity to the families who battle childhood cancer.

Rachel

Great Wolf Lodge

2009-01-19T10:15:00.003-06:00

This past weekend the entire family (Kevin's brothers, me, mom and Step-Dad) went to Great Wolf Lodge in travers City. We all had a blast! There were so many different things to do, and with all 3 parents there we were able to divide when the kids weren't in agreement of what to do next. They had an enromous in-door water park with, I believe, 6 or 7 different water slides. Some of them had 3 person tubes, and were almost like going on a roller coaster. Kevin enjoyed the water slides, but he gets cold very easy and his energy still isn't at Scotty's level, so we only partook in the water park for a few hours on Saturday. Scotty on the other hand was all about the water park and probably spent 7 or 8 hours enoying the slides. They had a Medieval adventure game, called MagiQuest. This was kevin's absolute favorite thing to do....We probably spent 7 or 8 hours going on different adventures, armed with our high tech magical wands. The adventure covered parts of 3 levels of the lodge, and the wands activated all kinds of different things (battles, talking animals, illuminated forest, etc..). His highlight is when he defeated the Goblin, which was a huge challenge. This trip was paid for by Children's Hospital, which is where Kevin was diagnosed and had his tumor resection and shunt sugeries. Although we were blessed to end up at St. Jude's for his post surgical treatment, we owe DMC Childrens Hospital a great deal of gratitude as well. Dr. Sood was an outstanding surgeon, who's surgical results (and lack of side effects) will always be greatly appreciated. At any rate, we had the Get Away package, which was incredibly generous. I'm not sure if the Social worker from Childrens DMC reads our blog, but thank you for putting it together. Kevin's been feeling well, and has made very good strides in almost all areas. We must have walked up and down 4 flights of steps 20 or 30 times when playing the game, and although it tired him out some, I was tired too! Which shows, when motivated, his endurance wasn't so bad. I'm sure if it was walking up and down stairs to do chores, it would have been different. We've been reading all the others St. Jude's blogs, and enjoy keeping up on them. I hope everybody has a fine M.L.K. day today.

Eric

STANDARD AMERICAN DIET (SAD)

2009-01-10T17:37:00.004-06:00

I am very blessed to have close friends who are into healthy eating. This may sound boring to some, but as we have faced childhood cancer with Kevin it has helped me feel prepared for this next part, keeping Kevin cancer free and get him growing in a healthy manner. I am so appreciative for all that they have shared with me. And for my husband who keeps me on track when I fall off and give the kids too many sweets.

I am looking into getting Kevin a nutritionist that specializes in working with cancer patients and kids who have finished treatment. Kevin does tend to eat the standard American diet otherwise known as SAD. All the information I am finding about it correlates SAD to increase the risk of cancer, heart disease, stroke, intestinal disorders. Here is the information I found today:

Ask Dr. Sears views on SAD.

http://www.nutritional-solutions.net/PDF/NJBTpresentation2005.pdf

http://en.wikipedia.org/wiki/Western_pattern_diet

Glad to be home

2009-01-10T01:05:00.004-06:00

Whew! What a busy week! Almost everything about the trip was pretty positive. We still have to watch Kevin for early puberty. It looks like his body might be trying to start a little early; indicating the radiation and chemo may have done some damage to his endocrine system. This makes nutrition and sleep very important right now as we try to get Kevin's body growing again. We know there are long term issues we will have to face. I learned something interesting about nutrition, not from the nutritionist of course but from the endocrine doctor there. Salt intake causes people losing calcium which is apart of the important minerals Kevin needs to get growing. Minerals are so important for Kevin right now and most likely for the rest of the time he is growing.

I spent some of the time (when not at the hospital with Kevin for appointments) doing all the things I can't do when the younger two are around while we were in Memphis. This means I actually used the work out room almost everyday we were there. I scrapbooked a decent size brag book for my mother & father in-law AND I started reading a book that is just for fun, nothing about cancer. I worked on our family genelogy (a project I started years ago) too! I have forgotten all I am capable of gettng done in less than a week. It would normally take a month or longer for all of this to get done at home.

It was nice to see Scotty, Jake and Mike today! This evening Mike and I played a 2 hours of Wii Rock Band after the kids went to bed. Mike must have been practicing while I was gone because he is pretty good on the bass guitar. I did guitar and vocals. The latter I would never do in public, especially to the Beastie Boys song. The game must have been created by a group of men because there is hardly any songs sung by girls.

We are so happy about the clear scans for this round. I am just praying for a cancer free life for Kevin. Thank you everyone for all of the prayers! We so appreciate all of the love and support. I think it definatly helps Kevin (& us) get through this.

Rachel
Rachel

Medulloblastoma

2009-01-06T21:54:00.005-06:00

In hopes to help other parents who have to face finding treatment (protocol) for their child with a brain tumor I am posting a link to a that shows different trials going on around the country. I highly recommend that parents research their options before signing up for the first protocol offered. Its a scarey time when your child has what only other people's child get. As I reflect on when Kevin was first diagnosised I can feel the fear still. I am so appreciative of the my friends who encouraged me to keep searching when I felt something was wrong, I appreciate the parents who reached out to us after Kevin's diagnosises and helped us navigate the difficult decisions we had to make. I am grateful to the community that came together to keep us afloat during this chaoes, whom helped keep Kevin surrounded by family when we had to make him incredibly sick to save his life. i think it was having all that family around that truely helped Kevin to get through the most difficult parts. To me, this group of people are angels I will forever be grateful for.

So here is the link: http://www.virtualtrials.com/tn.cfm

Rachel

In addition

2009-01-06T14:34:00.002-06:00

More good news. Cisplatin is a high dose chemo that Kevin took during chemotherapy. It was the heaviest of the chemo's and the one that can lead to a few longer term side effects including hearing loss. He had his audiology test this morning, and he did great! This includes the high pitches that cisplatin can especially damage. There are no guarantees she said, but a typical case of hearing loss would have surfaced in some form by now. He's showing absolutely no hearing side effects. His speech test also went well. We have some exercises to practice for both phsyical and occupational therapy. The head physical therapist said now is the time to push him a little. It's just like building up for a marathon. She recommended he particpate as much as possible in gym class, and set goals to improve on. His gym class often runs a few laps, and he should start trying to improve every week on how many laps he runs. He's in no danger, and will actually start to feel more confident as he accomplishes tangible goals. We will probably sign him up for Karate (which he participated in prior to his illness) to assist in regaining his balance, strength and endurance. We were thrilled most of all, as Rachel said that his scans are clean. This is close to 11 months since he's had an MRI showing any cancer. It's more importantly 4 months of clean scans since the end of treatment. We have a long road ahead, but each clean scan will be met with celebration and a step closer to being cured.

On a personal note it's been nice to see Ali here with Aileen and his wife. I've had a chance to spend some time with his family, which was a treat. I look forward to return home soon, and have another 3 months of normalcy.

Eric

Good News

2009-01-06T12:33:00.002-06:00

Kevin's doctor told us that Kevin's scans came back with no cancer growth. Kevin is 3 months cancer free then! We just pray that the rest of his scans come back like this.

Even though we have great news it is bittersweet as we watch all of these kids battle childhood cancer. I know of 3 kids who have suffered seizures, one little girl Abigale just under 21 months old whose left side is paralyzed and no one knows why but they think she may have had a stroke. Kayla is losing her battle with AT/RT, a type of brain tumor. Her and her family are in our thoughts and prayers daily. Along with MaryKate, and Trevor who was suppose to go home the same time we were but him and his mom are still here and not because they want to be.

Kevin got to spend some more time with his friend David last night which he really enjoyed. He also got poked again today and was really good about it.

Missing Scotty, Jake and Mike still!
Rachel

Rainy Memphis

2009-01-05T15:13:00.011-06:00

It is cold and rainy here in Memphis, but warmer than ice cold Michigan. We arrived yesteday evening. Kevin's friend David met us at the airport with his mom, my friend Celia; Kevin was so happy to see David. They were kind enough to run us to the grocery store so we have a few things other than cafeteria food and pizza to live on this week. Kevin is hoping to get to spend more time with David this week while we are here. It was nice to see Celia and the rest of the Mason family last night.

Kevin's first day is almost over. We are waiting for his MRI and LP to be done with, we might not hear anything about the results until our E clinic visit with his doctor. Today they took labs, sedated him for a full head and spine MRI and a lumber puncture (to test his CNS fluid, or in my terms, brain fluid).

Kevin handled the poke today with a few crocodile tears but over all much better than normal. They fitted him with an arm board while we went between assessment triage and the MRI waiting room. We had a long wait in the MRI waiting room and despite not being able to eat anything Kevin handled everything like the little man he has become. It is 3:30pm and Kevin is still under, it will be close to 5:00pm before we can start to try to feed him anything.

Tomorrow is more labs for the endocrine doctor this time. I am not sure about the rest of the day yet as I haven't seen the full schedule for tomorrow as of now.

Our annual Christmas trip to see Mike's family outside of DC was really nice. We all enjoyed lots of family time, Nana, Pop-pop and Uncle Ed even made the drive from PA to see us! We wish we would have had a chance to meet up with a few more friends, but hopefully next time we are in town. Jake was great for the 10+hour drive. We are blessed with some amazing kids!

I miss Scotty, Jake and Mike alot (I even had a dream about changing Jake's diapers last night; I don't think I have had more than 8 hours away from Jake since he has been born), but I am glad to be here in Memphis with Kevin through all of this.

Rachel

Happy Belated New Year

2009-01-03T00:34:00.002-06:00

Happy New Year. I am so happy to put 2008 in the rear view mirror. I hope and pray that 2009 brings good health and continued happiness to everybody. Kevin's been on vacation with mom since the 26th. I'm really excited to see him. He's sounded great over the phone, and hasn't had any health issues. We fly down to Memphis Sunday evening and he'll have his MRI Monday morning. Everybody please say their prayers and cross your fingers. He's been feeling great, so I'm optimistic.

Eric

belated Christmas Card

2008-12-26T00:04:00.000-06:00

Make a Smilebox greeting

Merry Christmas

2008-12-25T21:21:00.002-06:00

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

Kevin on TV

2008-12-18T21:16:00.003-06:00

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

Kids for A Cure Wrapping in Rochester Hills Michigan

2008-12-14T20:56:00.002-06:00

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

2008-12-14T10:32:00.003-06:00

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

Sunday

2008-12-12T17:25:00.002-06:00

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

Sunday News

2008-12-11T13:36:00.002-06:00

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

General Update

2008-12-05T10:59:00.002-06:00

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

Happy Thanksgiving

2008-11-27T19:30:00.003-06:00

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

Happy Thanksgiving!!

Rachel

Prayers for Will

2008-11-26T12:46:00.003-06:00

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

Childhood Cancer Awareness

2008-11-22T05:34:00.006-06:00

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

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

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

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

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

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

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

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

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

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

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

Please take a moment to let that sink in.

The stats really stink....

Rachel

update

2008-11-13T21:30:00.002-06:00

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

2008-11-13T12:15:00.002-06:00

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

Eric Saarela

weekend

2008-11-09T11:31:00.003-06:00

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

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

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

Take Care,

Eric

Prayers for Sarah Parker

2008-11-08T20:26:00.002-06:00

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

2008-11-08T09:49:00.000-06:00

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

October Happenings

2008-11-06T01:12:00.002-06:00

So Much Candy!

2008-11-01T12:49:00.002-05:00

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

Eric

Cancer Sucks

2008-10-30T22:27:00.002-05:00

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

2008-10-27T02:24:00.002-05:00

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

2008-10-23T22:34:00.003-05:00

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

2008-10-20T19:00:00.002-05:00

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

2008-10-15T09:57:00.002-05:00

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

2008-10-15T09:17:00.001-05:00

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

2008-10-14T01:38:00.001-05:00

Re-adjusting

2008-10-12T22:02:00.008-05:00

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

2008-10-12T15:50:00.001-05:00

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

2008-10-08T22:01:00.003-05:00

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

2008-10-08T20:34:00.003-05:00

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!!!!!!

2008-10-04T21:32:00.005-05:00

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!

2008-10-03T14:37:00.002-05:00

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!!!

2008-10-01T10:42:00.002-05:00

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.

Eating out today? Choose Chili's please!

2008-09-29T00:31:00.005-05:00

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

Jake Walking

2008-09-28T15:13:00.002-05:00

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.

Coming along

2008-09-27T19:44:00.002-05:00

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

2008-09-27T06:02:00.006-05:00

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

Comedy Fundraiser a HUGE Success

2008-09-26T12:43:00.003-05:00

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

Kevin's Shunt

2008-09-24T23:32:00.009-05:00

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

2008-09-24T05:57:00.003-05:00

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.

Nearing Kevin's homecoming

2008-09-23T14:04:00.002-05:00

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

2008-09-23T10:47:00.003-05:00

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

Pictures

2008-09-20T20:44:00.002-05:00

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

Gathering Strength

2008-09-18T11:05:00.004-05:00

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

2008-09-18T11:05:00.002-05:00

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

Childhood Cancer

2008-09-17T23:40:00.007-05:00

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

2008-09-17T21:59:00.002-05:00

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

2008-09-17T10:11:00.003-05:00

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 Night

2008-09-15T22:51:00.002-05:00

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

2008-09-14T23:27:00.002-05:00

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

2008-09-14T10:45:00.005-05:00

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

2008-09-14T01:35:00.003-05:00

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

Marked Improvement

2008-09-13T09:13:00.002-05:00

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

Infection

2008-09-12T22:54:00.002-05:00

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

quick update

2008-09-11T08:25:00.003-05:00

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

Back in the Chili's Care Center

2008-09-10T01:28:00.002-05:00

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

Daddy Mike on His Own

2008-09-07T21:39:00.003-05:00

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

2008-09-07T09:51:00.001-05:00

Quick blog

2008-09-05T22:46:00.005-05:00

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

No More Chemo Party

2008-09-05T09:36:00.002-05:00

Back at Target House

2008-09-04T21:08:00.003-05:00

Kevin's left the hospital at a very reasonable time today. He was home by mid afternoon. Rachel, Mike's dad, and Jake all hung out with Kevin at the Target House his first day back. He's feeling pretty well. He has a massive craving for potato chips, but really won't eat anything cooked. This is fine though, since each snack bag has over 10 g of fat. He had his eyes checked by the Opthamologist this afternoon. He basically said they're really dry, which is probably causing the blurred vision. He didn't realize Kevin was in the Transplant unit until the end, then he instantly assured us that it's very common for transplant patients. So starting tomorrow we have the pleasure of putting drops (basic saline solution) in his eyes. He probably won't love it, but as usual he'll grit his teeth and handle it. The doctors and nurses in the BMT unit were wonderful. I think we'll miss them all, and I say that hoping he never ever has to go up there again (no infection, please!!). Tonight we played bingo at the Target House. It was a big turn out, and we started out with all kinds of grand intentions. How did we do? To quote Kevin, "We sure do stink"! Mike's dad finally ended the dry spell. His energy's pretty good, and his sense of humor is definitely in tact. To me, his sense of humor is the biggest indicator of whether or not he's feeling well. Mike will replace Rachel here next week, as she gets to go home and see Scotty as he's now in Kindergarden. We meet with Kevin's teacher on Tuesday afternoon, and have curiculum night for 3rd grad shortly there after. It will be a little different going back to school this time, for Kevin. After Radiation he went back to his 2nd grade class room, who already knew and loved him. I'm confident his 3rd grade class is wonderful people as well, but it will be brand new to him. He's kind of going to be the outsider coming in, as the rest of the class started their routine on this week, where as Kevin probably won't start until the 4th week of September or first week of October. This will all work it's self out, but I feel incredibly nervous for Kevin. He's a very sensitive kid (always has been), so Rachel and I will do everything we can to make sure his transition back to school goes as well as possible. I've blabbed long enough....I seem to do so when I worry about Kevin. The good thing is I'm worried about his transition back to school. That's a very good worry to have considering his travels.

Take Care,

Eric

Kevin's stem cell transplant and Scotty's 1st Day

2008-09-04T04:34:00.002-05:00

Whew! It looks like we all made it through the 4th round of chemo! I think I still have a bit of my sanity in tact and not all of my hair is grey yet, just some of it. I am not fortunate enough to be blond and be able to hide any gray hairs very well. Kevin was in really good spirits this morning before his stem cell transplant. He is whiny any time he has to wear his mask but he spent most of the morning out of his bed and even tried to play a game of chase mom around the room dispite being attached to an IV pole. Before Eric left this morning we had him walk around the floor outside his room a couple of times. We handed out thank you's out to the BMT staff. Kevin got a headache once again and it appears that he is having trouble reading fine print, so we have an eye doctor appointment made for later on this week.

The stem cell transplant was at 3 pm (central time) and made him a little sick, he was not happy for about 4 hours after. We went through a whole pack of gum during the stem cell push. The whole process is a bit like mad science and makes his pee red which is a little freaky. But around 7 pm Kevin started to sit up again, think about eating and played webkinz.

I talked to Scotty and he was questioning if he had to go to school tomorrow for another full day. I guess the full day kindergarten is a bit much for him but I am sure he will get used to it. He misses his brothers terrible and really wants to be back in Tennessee. He was asking all sorts of questions like is it dark there yet? I could hear the longing in his voice to be there with Kevin, Scotty and I. He is such a tropper to put on a brave face for everyone and not crying. I have seen a number of siblings have break downs here when they have to leave their moms to have someone else care for them while mom takes care of the sick brother or sister. Cancer is tough on both the patient and the siblings. I am glad there are organizations out there that recongize that and support both the patient and the sibling. We will probably become more involved with them when we get back home.

Pappy says that Jake was pretty good for him today and they had a good time together. I really appreciate Fred bringing me dinner to the hospital each evening. We are typically there until 8 pm when Eric gets there to relieve us, I typically don't get lunch or even breakfast (other than a starbucks). I have to get Jake ready for bed as soon as I get back to the apartment and get ready for the next day which doesn't leave much time to get something for dinner even if it is carry out.

Kevin should be getting out of the hospital tomorrow evening. Hopefully earlier than later but hospital discharges can take FOREVER!

Rachel

Scotty's 1st Day of School & Pappy Visit Photo's

2008-09-03T16:48:00.001-05:00

Long slumber

2008-09-03T11:39:00.003-05:00

Kevin's just now getting up after nearly 13 hours of sleep. His vitals went very well last night, mainly because we had a great nurse who did them her self. There's a very different bed-side manner between the RN's and the NCA's. For the most part Kevin was able to get an entire night (and morning) of uninterrupted sleep. I've already met with the Doctor who said he's right on schedule to get out tomorrow late morning/early afternoon. We get to be a little lazy when he's inpatient, since all the meds go in through his line. We went over medicine's this morning, and it reminded me of the 90 minutes every morning and 90 minutes every night of hooking up his redimeds, disconnecting his redimeds, hooking and unhooking him from TPN, and of course flushes of both saline and heparin. The plan is to get him back started on TPN tonight, then as he eats more gradually ween him off of it. He gets a final Vincristine push in 6 days (which is his outpatient chemo) and that should be the end of it! He's well rested this morning, and in a good mood. His appetite is definitely not back, but after a week or so it should gradually return. We need to be very careful because we don't want him getting an infection this time around. Also, the doctor I spoke to this morning confirmed earlier reports that the marks on his spleen shouldn't be of worry as far as cancer goes. They'll continue the anti-fungal medicine and go from there, but it's their concensus that it's not something serious. I think this final round overall, has gone much more smoothly then the others. Perhaps we've just become accustomed to the daily regiment and side effects, but otherthen the middle of the night vitals Kevin's really handled everything very, very well.

Take Care,

Eric

A little weight loss, but hanging in there

2008-09-02T23:10:00.003-05:00

We are one day away from being through this (hopefully) last course of chemo. Tomorrow Kevin gets his bone marrow stem cells at 3pm central time.

Today was pretty good, he is still a little frustrated about the diarrhea that he always gets from chemo. He basically has no control over it and that is very frustrating for him, but overall I think he deals with it well, probably way better than I would in the same situation.

Kevin did physical therapy today and a little bit of school. I am a little worried that he is getting really bad headaches from any physical activity more than a short walk. His headache was so bad after PT today that as much as he tried he could not work through it and we had to cut his hour of school short. After that he rested as much as he could. He is down a little under a pound. As soon as we are through the next couple of weeks of no immune system we will start working on Kevin getting some good nutritious food in him, as it is going to be important to do everything we can to try to keep him cancer free here on out. After this it is our turn, our responsibility to get Kevin back to good health and keep him that way for the rest of his life. The American Cancer Society has a website about nutrition for cancer survivors and nutrition for cancer prevention. I hope all of those around Kevin make a point to reinforce the importance of healthy eating and lifestyle, it is going to be incredible important to his survival as just by the natural of what he has already gone through is going to leave him more susceptible than the rest of us who have not had cancer.

Jake gave Pappy a hard time once again (Jake can be a real cranky baby at times). He seems to do pretty well during the day, but as evening comes he is ready to be back with his mother. We really appreciate Fred being here to help. I am glad the kids are getting time with him, since they live so far time is precious as we don't get many visits as we would if we were close.

Scotty starts his first day of kindergarten tomorrow! I am saddened that Kevin and Scotty aren't going to school together tomorrow. They should both be getting on that bus tomorrow morning together. I feel like somehow someone made a terrible mistake and we are still here, when Kevin should be back home starting school with everyone else. Of course that is not really the case, but I guess it is just how the situation feels to me. I think Scotty feels a bit of the same, he really isn't excited nor aprehensive about starting his schooling career, he is just rather ho-humm about it. Hopefully soon next month they will be getting on the school bus together, bugging eachother.

Rachel