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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Weekend

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

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

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

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

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)

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

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

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

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

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

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

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