Update early 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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