Friday, January 30, 2009

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.

Tuesday, January 27, 2009

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!


Tuesday, January 20, 2009

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.


Monday, January 19, 2009

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.


Saturday, January 10, 2009


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.

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.


Tuesday, January 6, 2009


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:


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.


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!

Monday, January 5, 2009

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.


Saturday, January 3, 2009

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.