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Friday, April 26, 2019
Where did this last year go??? Time seems to pass by faster and faster each year. Today Shane would be 33 years old. I really have a hard time picturing him at that age. To me, I guess, he will forever be 18. The boy who loved to listen and direct music (many times while on the freeway to or from Ann Arbor I would see him in the back seat of the car directing to whatever he was listening to) …… loved watching TV (Red Green, Boy Meets World, Matlock, Quantum Leap, Game Show Network, an endless list of shows) …… LOVED the Wolverines and going to the Big House to watch them …….. loved his family and friends and anytime he could spend with them …… and he loved sooooo many more things …….. he just really LOVED life and he always showed it with his enthusiasm towards everything that he did. Through the ten plus years that he was being treated for his cancer, he always acted like his cup was still “half full”. I still hear his voice in my mind with his ‘one liners’, and quick responses to things that would happen when he was around …… after almost fifteen years without him here, he is still truly never that far away from me. This past year a very special person, Shane’s Grandma Sherrie, joined him. When Sherrie died I could imagine the reunion that was going on, all of the catching up that was being done. A couple weeks later I laughed imagining them still talking non-stop. Life really does go on, it has to, and I’m sure they are not far away cheering us all on.
There have been a few changes in our lives this past year. Kayla, Tim and Charleigh have a new addition to their family, Gallagher James. He was born on June 7th, and is such a happy, funny baby. Almost a one year old, and wanting to walk so bad. As badly as he wants to walk though, eating is his favorite pastime :D Kayla has switched jobs again and is now working at one of the middle schools in town and is liking it very much.….. Adam and Rachel are still down in Ypsilanti (so very close to Ann Arbor (which Shane would have loved)). Adam also switched jobs and is working not even five minutes from where they live, which is amazing because he misses all of the traffic problems down there. Rachel still has two years (I believe) to put in down there at St Joseph’s (also not even five minutes from where they live) before they would be able to move anywhere. They both have busy schedules, but they make it work……. Randy is pretty much retired as of a couple of weeks ago. He has a lot of vacation to still use up, but as far as getting up every morning and going to work …… he is done ……. Yaaaayyyyy!!!!........ I, on the other hand, have no plans or desire to retire. In fact, I started a new job in August working with Special Ed students again. This time at the high school in Pinconning, and I love it!!!
So later today we will be celebrating Randy’s retirement. It will be the first time in awhile that we will all be together on this day, Shane’s birthday (someone is always living out of town usually). There will be old friends, and family there to help Randy celebrate, and deep in my heart I know that 18 year old boy, to me, will be there also………. Have a GREAT day everyone …….. and don’t forget, it’s a “pizza day”!!!
Happy Birthday Shane!!!!! LOVE YOU ……. and still miss you like crazy!!! <3
Thursday, April 26, 2018 06:00 AM CST
HAPPY BIRTHDAY, SHANE!!! As I was scrolling through TV channels last night, Independence Day showed up. Definitely one of Shane's 'all time' favorite movies, so I had to watch it (I really always liked the movie too). It was a Shane moment.... or a Shane 2 hours. After the fire that we had a couple of years ago, I made sure to replace all of his favorite movies that were destroyed in the basement. It was my way of holding onto something of his I guess, plus most of them were such fun movies to watch and I'm sure I will get them out someday.
Well ..... Kayla's baby is due in a few weeks. She is having a boy this time. Charleigh would rather have a sister, but I think she will love just having a baby to take care of in the house :) They are not saying what his name is going to be until he is born, but Charleigh has named him Celery .... lol.
Thank you for still thinking of Shane, and I hope you get a chance to have some birthday pizza today!
Thursday, November 30, 2017 06:00 AM
***PICTURES ARE BACK .... YAAAAAYYYYY!!! ***
Last week I was sitting behind a truck at an intersection in town looking at his license plate. It was the Michigan plate that Shane and I use to say he designed. When he was eight, and first diagnosed, we started spending hours and hours on the freeway going to and from Ann Arbor. We would do a lot for fun/entertainment on those trips, and rating all the different state's license plates was one of them. We'd compare them, talk about what that state must be known for based on their license plate (we thought some were funny back then) …… Back then in Michigan, you either had the "all blue" plate, or the Model T plate. We didn't like either of them. Shane was such a doodler/drawer back then I told him to draw a picture of what he thought it should be. He accepted the challenge and came up with a picture of the Mackinaw Bridge connecting the two peninsulas, with an orange sky and the sun setting at the water level. When the new plate came out in 1997 it was everything in his picture (except the sun was rising not setting). We LOVED it!!! The license plate in front of me last week was that one. As I was looking at it a number came into my head ……. 2488 035 7. I hadn't thought of that number in forever. That was the number assigned to Shane at U of M/Mott the very first time he entered their doors. He had it memorized a few months after we started going and was so proud of that. When we would forget our 'blue card' he would recite the number to admissions and they would laugh at him. He would then answer when they would ask what meds and doses he was on. I would just sit there and let him answer and nod my head yes to them all. Seeing that plate and remembering that number, was definitely a ”Shane moment" that made me smile.
This past year has flown by since I last entered anything on here (other than a picture change). We had Kayla's wedding shower to get ready for in the spring, Adam and Rachel moved down to Ypsylanti in late spring/early summer, Kayla's wedding at the end of June, Kayla looking for a house and moving back to Bay City in August, her buying a house, and then the diy (mostly) remodel of that house (they make it look so easy on HGTV)……….. it's been busy around here.
I think it was early May that Rachel graduated from MSU and is now officially a doctor.
She picked St. Joseph Mercy Hospital in Ann Arbor to do her four year residency….. soooooooo it was load up the trailer (they mostly did it) and move them down to Ypsilanti In June. Adam just started his 2nd job down there and is working just down the road from where they live now. That is so nice that he doesn’t have to fight the nasty traffic during the week. He has also picked up a traveling, week-end home visit job, so he can try and get some of his student loans paid off quicker. I think between their schedules he and Rachel’s paths cross once in a while (kidding). I think they have adjusted to their crazy schedules pretty well.
Kayla and Tim were married on June 24th. It was an outdoor wedding at Dow Gardens, and besides the ‘not knowing what to expect with the weather’, it went pretty well. Two days before the wedding the monsoon of 2017 hit. I have NEVER seen so much water on our road in my life (I have lived on this road since I was 5). Our house was on an island, the back yard was almost completely under water. Midland, where the wedding was, was hit the hardest. Roads were closed, areas in town were flooded bad, the river that runs through was up so much that the water was over the crossing bridge near the office to the gardens. The garden itself that she was married in was a little soggy on the way to walk there, but was good down where the ceremony was.
The actual ceremony was a little rushed because the radar showed some bad weather close and on the way. It started to sprinkle just as she walked down the aisle, and continued during their vows. The girls standing for her got their umbrellas out to cover their hair (smile), and by the end of the vows an umbrella was being held over Kayla and Tim. Charleigh was adorable with her big, full, wedding tutu on, carrying her huge balloon in. Pictures were rushed after because you could hear the thunder approaching (we didn’t get Rachel or Charleigh in any family photos (sad face)), and after all that the storm seemed to just miss the immediate area. The reception was great, and it was so much fun watching all the kids (young adults), dancing and having a good time. The weekend was exhausting though, and it took a few days to recover from it (I think I am getting old).
In July, Kayla and Tim put their house in Fraser (near Detroit) up for sale with plans to move back here. Tim has had his job up here for almost two years and he would drive up and stay at his family’s house when he worked, then drive back to Fraser and stay when he was off. Their house sold kind of quickly, so Kayla left her job at Beaumont Hospital and she moved back in with us until they could find a house to buy here. It took a little while, and a lot of going through houses for showings, but they finally found one. It was like stepping back into time when you walked in. It’s a brick ranch and was built in 1958. They bought it from the original owner. Every room had carpet, colored carpet, old carpet (smile), but in SUCH good shape, but still old. There was a green room, a pink room, a peach room, and the carpet and walls matched (the curtains did too). It was kind of like walking into the White House with all of the colored room schemes. There was also wrought iron everywhere ….. iron pillars outside on the porch and down the front of the house, four iron pillars IN the house dividing the hallway from the living room with 2 iron gates between them, a decorative iron wall in the bathroom between the sink and the toilet (Charleigh likes that one – she says it’s for privacy, lol), an iron fence that surrounds the patio, and an iron base to the mailbox. I think that covers it all. It took forever for the paperwork to be done, then once they had the keys it was demo time. Underneath all of that colored carpet were wood floors that had not seen the light of day in YEARS! They were in pretty good shape mostly, but needed some love. The basement was dark, dingy, had old red carpet, dark paneling, drop ceiling everywhere, a wall going down the middle, with closets added on everywhere …….. needless to say, the paneling and drop ceiling are gone, the majority of the middle wall is down, a lot of the extra closets are gone, and the carpet and pad (which became ‘one’ with the cement floor) are gone (we’re still working on scraping the pad off of the cement). After three months of her living here with us (Shane would have laughed about that), the main level of their house was completed enough that they could move in. Their basement ……. well that’s a work in progress, but it’s getting there (smile).
Other Kayla news is that last week we found out that she is expecting in June. Shane would be an uncle again. I can picture in my mind he and Charleigh together at times. It would be so much fun to watch. She is such a hoot!!!
Thank you again, so much, for still coming here and checking on us……… and thinking of Shane!!!! It means a lot!!!
Wednesday, November 30, 2016 6:45 AM CST (WARNING..... sorry about the size of some of the pictures. Just when I figure out how to size them..... they change it on the program ... lol)
Another angel anniversary has arrived, another year has gone by, and I can't help but think about all of the things that Shane missed out on this year. All of the fun he would have had, all of the fun we would have had watching him during those many special occasions. In my mind I can still picture what his physical reaction would be when certain things happen, or what his verbal response would be …….. sometimes he was VERY predictable, and oh so funny. I especially pictured his reactions and responses during the U of M / Ohio State game on Saturday (lol). I LOVE that he is still close to me in that way. This time of year can sometimes be a challenge, some years more than others. But then this is the time of year when I also have so many good, fun, memories of Shane ……. I try to focus on those. During this time of the year, the year that Shane died, we were making so many trips to Ann Arbor for transfusions, chemo, and radiation. Christmas is always set up at a landscaping store that we would pass here early in October, so we stopped at it on the way home a couple of times so he could pick out a Christmas ornament for each of his out-patient nurses, Dr. Yanik, and his special Child Life friends (he had already done this for his in-patient nurses a couple of years earlier). He had a blast!!! He somehow wanted each ornament to represent how each person was to him ……. how he thought of them. He finished choosing them all 'just' before everything went downhill for him. He wasn’t able to deliver the ornaments himself, but I put a little card with each of them to explain why he chose the one he did for each of them. It was a trip that I made by myself a couple of weeks after he had died, but it was a good trip because we shared so many fun memories of Shane while I was there. I received a message on facebook this week from one of his favorite in-patient nurses, Kim. She was letting me know that she had just hung Shane’s ornament on her Christmas tree and she was thinking of us………… how special !!!!
The time since Shane’s birthday (the last time I posted anything) to now seems to have flown by. Adam and Rachel were married at the end of August. Other than a little rain, the day was perfect!!! Adam wore Shane’s class ring on a chain around his neck that day. I loved the idea. He said later in the evening at the reception that while everyone was exiting the church and giving hugs, the ring would push against his chest and cause him a little twinge of pain ……. which would then give him the feeling that Shane was right there with him (that does sound like something Shane would do) :) Shane would now have a sister-in-law, someone else his own height (lol), and someone he could challenge their knowledge on different topics with. He would love her!!!
Kayla posted the above picture of her and Adam (and all of the other bridesmaids) on her facebook page and said, "I have come to the sad realization that we look much similar than I thought." When we were all tested for a bone marrow match for Shane, Adam and Kayla came back as a perfect (?) match for each other….. Shane responded to that ….. "Of course they are" :)
Kayla, Tim, and Charleigh are still down in Detroit (Fraser to be exact). Ms. Charleigh is now two years old, and is a hoot!!! Always on the go, always talking. I told Kayla that when Shane was little he would sit on the floor in the kitchen while I was doing the dishes, cooking, whatever….. and he would just babble about anything. At times I would tell him to let me see his tongue, and after he stuck it out I would tell him that it looked soooooo tired and it needed a rest. He would pause, and then giggle like he was onto me ……. Charleigh is so much like him in so many ways. She doesn’t slow down much at all while she is here…… but something that is NOT like Shane (or any of my kids) is when she’s ready for bed, she’ll tell you she’s ready for bed, and she goes. Kayla and Tim are getting married at the end of June next year …….. that will be so much fun watching her that day.
A few months ago I decided that I wanted to try and find a little girl that we had gotten to know when Shane was first diagnosed and started his treatments. First, I just wanted to see if I could even find her, plus I wanted to see if she was doing ok. Back when we first met her she wasn’t even a year old yet and was at Mott being treated for leukemia. Jackie learned to walk in the hallways of 7 West with a lot of us cheering her on. When she was in isolation for weeks after she had her transplant, Shane and I would sit on the floor and play peek-a-boo with her through the bottom window on her door. She used to like Shane’s KoKo so much that we got her a mini version of it to have in her room. Whenever we would go to Mott and check into 7 West for a treatment, the first thing Shane would want to know was if Jackie was there……….. Well……. I found her. She is now 20 years old (I believe). I messaged her on facebook, explained who I was, how I knew her, and attached a few pictures of her that I had from back then. She is all grown up now, and such a pretty girl. Shane would love the fact that I found her.
Over the summer Shane's best friend and locker partner, Stacy, had a baby girl. Her 5th child :) She named her…… Paisley Shane. We met her last week for the first time. What a happy, cute, baby!!!! Such a special little namesake. Sometimes I'm not thinking and that was one of those times……. I didn't get a picture of her to put on here. Trust me …… she is a cutie!!!
This winter I plan on trying very hard to get my house back to some sort of order ……… I still have boxes to unpack from the fire move-out. I would say that I am going to try and get everything organized, but Shane used to say that my name, and the word ‘organize’ should not be on the same page (what do you suppose he meant by that)…….. Stay warm this winter everyone!!! I am SO looking forward to the snow after this last, hot summer !!!!
Love, love, love you ~ Shane!!!!!
Tuesday, April 26, 2016 7:24 AM CDT Well that year went by fast. Happy, HAPPY, 30th Birthday, Shane!!!! As he would say when he was younger, he would now be three decades old :) . As hard as it was last year picturing him turning 29, it's even harder this year imagining him turning 30. The big question I wonder about this year .... What would he think of all this 'race for the presidency' stuff that is happening this election season? Whatever he would be thinking, I'm sure we would ALL know about it. He was always very vocal about his opinions regarding politics :) .This last year was a little harder than some of the others in the past. There were so many special occasions that Shane missed. Weddings of family and friends, babies being born, more babies being announced for the future, graduations, wedding proposals ..... too many things that he should have been here for.
Not long after Shane's birthday last year Adam had a special day planned for Rachel. In mid May he took her to the city of Empire to a spot that overlooks Lake Michigan. With the beautiful lake in the background, and sand dunes all around (and Rachel's sister and I hiding with cameras in the bushes), he proposed to her. It couldn't have worked out any better than it did. We all had a timeline that he had written up for us to follow, and everything went exactly the way he wanted it to (Shane would have laughed his head off at all the specific planning he did). They will be getting married this August, and we couldn't be happier.
Kayla, Tim, and Charleigh, moved to their new house in June. It's a nice area, and they have a nice big yard for as close to the city that they are. Traffic is always a challenge there, but I guess you get used to it after a while. Patience is the key :) . It makes me think of so many stories that happened to Shane and I while we did all the driving that we did over the years. I would tell him "Don't look out your window when this next car goes by". He would respond, "They're going to flip us off aren't they? What did you do?". The answer was usually a 'yes', with a brief explanation. We had fun on our trips that's for sure. At Christmas this year after opening our gifts, Tim snuck back and gave Charleigh an engagement ring and told her to give it to her mom. As she was walking with it towards Kayla and looking at it, Tim was hiding outside looking through the window. Kayla saw that Charleigh had something in her hand when she got by her and asked to see what it was. Tim came in then and asked her to marry him. Adam, Rachel, Randy, and my mother didn't really know what had just happened at first. It was quite cute. That wedding will be in June of 2017. We are so happy about this wedding also.
So many happy times in our house, but still missing one special person while they happen.
Little Miss Charleigh turned one in the early fall last year. She is such a hoot. On the go all the time, repeating everything, laughing about the silliest things .... She is so much fun to have around.
A week after we had Charleigh's birthday party at our house we had a small fire there. It was a little after 10:00 at night and I was finishing up the dishes before going to bed. The dishwasher started to run funny, the lights in the kitchen blinked a little a couple of times, and then the smoke alarms started going. I checked the dishwasher, it was fine. I opened the basement door and that was fine. So I went upstairs to get Randy to get the alarms to stop beeping, thinking it was a battery gone bad. As I started back down the stairs you could then smell the smoke. I went back to the basement door and opened it. The smoke just came rolling up. I yelled to Randy that the basement was on fire. I grabbed the dog, got the keys to the car and drove across the grass to the neighbor's driveway. I ran to their door to tell them our vehicles were in their yard, the dog was in one of them, and that our house was on fire. I ran back home to start grabbing things and when I turned around, they were all in the living room with us helping to grab all the pictures that I had sitting out, and off the walls (you just can't replace some of those). They have been so great, and supportive through all of this. Three hours later the fire was out, and the fire department was gone. It was our dehumidifier in the basement that started it. It pretty much put itself out on its own because there wasn't much near it, other than a few cardboard boxes with the kids' school papers in them from grade school (of course), to fuel it. The most damage was from the smoke. Under those cardboard boxes were some Rubbermaid containers. Those got hot enough that they melted, and produced the most plastic smelling, sticky black smoke, I have ever seen or smelled. Everything in the house had a coating on it. Some of the insulation in the walls had black throughout them, so they ended up packing everything in boxes, hauling it away for cleaning, and tearing the walls down to the studs. What a mess. The basement, and everything in it was a total loss, so they said. But me, I had other plans. You can't replace, or put a dollar value on some of the things in that basement. I spent days down there with a mask on, sorting through things before they came to take it all away for trash. I kept the things that bring back a memory that I'm not willing to part with yet. Maybe someday, but not now. A special friend that I use to work with years and years ago, came to help me sort. Back when Shane was diagnosed, it had been a long time since her and I talked. We both had kids, work, busy lives. When Shane was admitted in Ann Arbor for the very first time, her and her husband (also an old, close friend), came to see us, and offer their support. Same this time. It had been so long since I had seen, or talked to her, but she came again to help and offer support. Kayla took the day off from work and came too, and we all went through a lot of papers, kids art work, toys, special treasures ..... boxing what we would try to save. What a project. Kayla, of course, kept holding things/pieces of things up, asking if it was Adam's, then saying "Oh no, another thing of Adam's is a total loss." :) Randy and I spent the next 1 1/2 months at the Holiday Inn Express (I cannot say enough good things about that place), and another 3 months in a trailer that was put in the backyard for us. We finally got back into the house the beginning of March. 200 plus boxes later...... (I'm still unpacking) :) . Sooooooo many memories in some of those boxes. Every once in a while I need to take a mental break.
I hope this last year for everyone has been a good one. I consider us very lucky for this last year. I know the fire could have been so much worse. I still have my memories of Shane, and his years with us, and because of the fire some of them are very fresh, and some that may have been forgotten are now with me again because of seeing items when unpacking. I also have two weddings coming in the future that I am looking so forward to ..... Shane would still say, ..... "Life is Good". Take care everyone .... And HAPPY BIRTHDAY SHANE <3 !!! Love, Love, Love youuuu!!!
Sunday, April 26, 2015 6:41 AM CDT Today would be Shane's 29th birthday.... it is so hard to imagine him at 29. What would he look like ¡K¡K what would he be doing with his life .... would his 'likes' and 'dislikes' be the same.... ???? Things to wonder about. Thinking back to his birthdays when he was young, sometimes getting his list and seeing what he was asking for was the fun part. He would ask for the normal Power Rangers, Ninja Turtles, Super Soakers.... but then he would also throw in a globe of the earth, a box of maps (atlas') one for every state in the U.S., a galaxy viewer that would show the constellations on the ceiling, the sun dial that I still put out every year with the saying, "Time Takes All But Memories." We had started a little memory garden in the front yard for a few of his friends that he had lost. I had bought some rusty stars that were soldered to little metal poles and we painted their names on the stars and stuck them in the ground in the garden. He wanted the sun dial to put out there also. The poor thing has been through years of sunlight and weather and it needs a paint job ..... maybe this summer. As Shane got older his birthday lists consisted of anything that was electronic, or things for the computer. He would LOVE the technology that is out there right now! I came across a couple of his old Christmas lists a while ago when I was going through things .... little treasures that make me smile. The last few years that Shane was here he switched from having a birthday cake/cookie, to birthday pizza. 'Dare to be different' were truly words that he lived by. For some reason there is a birthday picture of him from 2002 that has a candle stuck in a pizza sub. I'm sure there is a good story behind that one. I also remember one year we stuck the candles in the pizza and lit them for a picture. He had to blow them out quick because the pizza was still pretty hot and the wax was melting on it. Fun things to remember.
News around here .... Adam moved back to Bay City in February because he started a full time job at Covenant. YAAAAYYYY!!! Rachel is still in Grand Rapids finishing her school for this year. When that is done (the first part of May), she is going to stay down there to study for her big test (board test???) that is in June. When her test is done she and Adam are moving to Midland where she starts her 2 year internship at Mid Michigan Medical. Back in December, Christmas weekend, Adam stood in a wedding for one of his friends from high school. It was so nice to see that group of kids/young adults together again, and to spend time with their parents again. Where did the time go? They're all grown up.
Kayla started her new job on the Pediatric Oncology floor about a month ago. She now works with kids, and their families, while they are being diagnosed and treated for cancer. She is very happy with her new hours and she has a lot of ideas for the floor. Ms. Charleigh is growing like a weed.
She is 6 months old already, almost 7 really. I'm afraid to say though that she may have been hit with the short stick like Shane. She is all smiles the majority of the time. I can tell we are going to have years of fun with her. Kayla had something exciting happen a couple of weeks ago. A man showed up at her front door and offered her $30,000 more for her house than what she paid for it .... in cash. So after checking into it and making sure he was serious, we went house hunting .... again. They found one, put an offer on it, and found out the offer was accepted yesterday. She discovered that going out of town a little will get you more house and more yard. Soooooooo .... it looks like the month of June will be busy moving kids. We are getting so good at this :)
The first of March I made a trip down to Motts/U of M. They knew I was coming this time so passing through the check points was much easier. Shane's picture is still up in the long hallway, and I think they received a large gift of money that they will now be able to add more pictures. When you get off the elevator on the pediatric cancer floor and start walking to the actual unit, above you cannot miss the sign that says 'Coach Carr Pediatric Cancer Unit'. Shane would have LOVED to see that. He was such a big fan of his. This time, seeing that sign was sad. For all that Coach Carr and his family have done for the hospital, they still received the news that no parent, or grandparent want to hear. His 5 year old grandson (Chad Carr), was diagnosed with an inoperable brain tumor in the fall of last year. He started treatment in the unit named after his grandpa, and is now going to New York (Memorial Sloan Kettering) for treatment. Chad and his family could really use some prayers (facebook account ~ Pray For Chad Carr).
Still so many signs and reminders of Shane on a daily basis for me. I am sooooo thankful for that. He is never far from my thoughts. Thank you for still coming here, and for still thinking of Shane .... don't forget to have some pizza today :)
HAPPY BIRTHDAY, SHANE !!!!! LOVE YOU!!!!
Sunday, November 30, 2014 7:27 AM CST
Our first time going to Mott we got off of the elevator, turned right, then walked down this long hallway that seemed to go on forever with windows on both sides. At the end of the hallway was the park (play area), then through the doors to enter 7 West. That long walk down that hallway was one of the scariest times. The not knowing for sure what was wrong at the time. The not knowing what to expect, or how to explain it all to an eight year old. The reality of seeing kids with no hair playing in the park area, and knowing he could soon be one of them. Then while walking through the park I saw a teenage girl, with no hair, wearing a shirt that said, "I'm Too Sexy For My Hair" (from a song that was popular back then). At that moment I realized if a teenage girl can make light of what was happening to her, we could do this. The majority of the people in the picture above became part of our family that day when we went through those doors at 7 West. They gave us such a sense of peace and a feeling of being safe whenever we were there. Shane really never complained about ever having to go down there. If anything, he would be excited to get to see everyone. Even our 'in the middle of the night drives down because he had a fever' didn't bother him because he knew the night shift nurses would be there when we got there. He once told me he liked going down there really late because he usually was sleeping when the late shift worked and this way he would get to talk to them. Too funny! After quite a few years of his treatment being done inpatient, we switched to it being mostly done outpatient. We already knew the outpatient nurses because from the beginning you always checked in through them first, but spending hours upon hours with them daily for a week at a time, they also became part of Shane's extended family. I ended up spending extra time down there with each trip because if he was inpatient, we would have to go visit the outpatient before we left. If he was outpatient, we would have to go visit the inpatient before we left. THEN….. we would have to stop at Nuclear Medicine to visit his MIBG scanning tech, and outpatient surgery so he could visit the nurses there……… he always had someone that he wanted to see before we could leave to come home. The other special group of people that he really loved to spend time with was the Child Life team. They were his lifeline to fun and distraction from all that he was going through (his nurses were also a good source of fun and distraction). He would be inpatient getting his chemo, getting sick afterwards, but all he wanted to do was to get to the Child Life room to see what they were doing. We would push the IV pole down to the room while carrying the puke pan with us. There was no talking him out of it. The picture below is some of his Child Life friends.
This November 30th has come up pretty quietly for me. Not what I expected at all. I remember reading in one of my 'grief' books, that sometimes the anticipation of an anniversary (of anything) can bring on more anxiety then the anniversary itself. I think that was true this year for me. I know that Shane is always, so much still with me. Maybe that is why this special anniversary has been pretty easy for me so far. Whenever I hear a Blue Jay, it always reminds me of him, and camping, and all the fun that we had. I love to walk the dog during anytime of the year. Even in the dead of winter you can still hear a Blue Jay and that brings Shane right to me. This week while on a walk in the 'just above zero weather', there were more Blue Jays than I have ever seen following us down the road. Crazy me, I just kept walking because I loved seeing them and hearing them. Then reality hit when I had to turn around and walk home against the wind…. I also noticed that the Blue Jays didn't follow us back (I think it was a set up). I definitely still have moments where my emotions get the best of me and the tears come. There is no rhyme or reason to what causes them….. who would think Home Alone would bring tears to my eyes : ) but it did. I guess I feel that if I stop having those moments, then I'm losing Shane again and I don't want that to happen. I know he is with us to stay, there is no forgetting someone like him.
Since I last wrote there have been a few exciting things happen around here. Adam DID graduate from CMU with his doctorate in Physical Therapy. Dr. Rezmer……… Shane would LOVE it! I am so glad that part is over for him. He has met many good friends along the way. He has his friends from high school that he still sees. Then he has two different groups from Alma and CMU that he stays in contact with. I just hope that the cost of it all (dollar wise), doesn't get too overwhelming. He and Rachel are still in Grand Rapids and he started working there in a clinic in September. Rachel started her second year of med school in September also. Boy did they get hammered with snow last week, 24 inches I think. I told both he, and Kayla, that they should move back up here…… it always seems to miss us.
Kayla had a baby girl on October 4th. Her name is Charleigh Grace. Everything went well. They encouraged her to come a little early (induced her labor) because Kayla was really retaining a lot of water in the end, making her blood pressure go up. She has brown hair and blue eyes, and is a little cutie ….. of course. She is almost two months old and is starting to look more and focus on things. She thinks everything is pretty funny right now, hope that trait stays with her forever. Shane would definitely lover her. Kayla was home this week and she worked on her resume and a cover letter for a Pediatric Hematology/Oncology position that was opening soon at Beaumont. Well, she had just finished both when her boss at Beaumont called her and offered her the position. What are the chances of that happening? Her maternity leave ends today and she goes back to the emergency department tomorrow, but soon she will be up on the floor working with kids who have cancer………. Shane would LOVE it, and I am sure he would have a lot of advice to give her : )
I went to Ann Arbor last week for a visit. It had been awhile since I was there, and it being November, I just wanted to go down and walk around and remember. I went to the new hospital to see the nurses. That place is like a guarded fortress. I'm surprised they didn't ask for my finger prints (ha, ha). I made it past the first check point, but when I got upstairs to the floor they asked who I was there to see. When I told them I was there to visit the nurses he asked their names……. Well all I could think of were their first names. I gave him a couple of them, but he just kept looking at me, waiting for more information (last names). Finally out of the blue I came up with a last name (thank God for facebook). He then phoned back and asked permission for me to enter…… what a process. Not like the old days when you just walked in, and back. I was able to see more nurses that day than I ever have. It was sooooo nice. Shane's picture is up on one long wall that goes back to the inpatient rooms. Then there are a couple of pictures of him on a slide show on a couple of big screen tv's that are on the floor……. he is still there with them. It was a great visit!
Last night I received a message and a picture on facebook, from one of Shane's best grade school friends. She sent me a picture of a table with Shane and two other pictures on it. She was at their 10 year class reunion last night, and she said, "He's with us tonight." How special was that, just when I needed it too!
Shane, you may have left us physically ten years ago, but you are, and ALWAYS will be, right here with us!!!!
Love you……. and miss you!!! XOXOXOXOX
(and KoKo too)!!!
Saturday, April 26, 2014 7:23 AM CDT When Shane died life became like a game of numbers. One week since he was here, two weeks, three months, one year……… That game slowed down some when we reached the five year anniversary. This year the number game has returned in my head again……… 10 years. It started at Christmas remembering that it had been ten years since our last one together. Thank God for all of the Kodak moments that were taken. This past Christmas here was very low key. Sometimes I'm in the mood (too much), sometimes it sneaks up fast and I'm not ready, sometimes I just don't care……. I'm not sure what happened this last one. I know we were the last people to buy a tree at the tree farm that we go to for the season (3 days before Christmas – ha, ha). It sat in the garage for a day to let the snow melt off. We put it up, I put the lights on, then it sat there. I almost didn't put any ornaments on (lights were pretty enough…. right??), but I felt guilty and I know Shane would have pitched a fit, so I finished decorating it at 2:00 a.m. Christmas morning……… funny. So, to make up for my lack of Christmas spirit this past year, I went shopping during the 'after sales' and purchased thousands of Christmas lights. I decided that I am going to light up this house this coming Christmas so much that a certain angel can see it from heaven this year……… should be interesting : )
Saturday, November 2, 2013 7:17 AM CDT
Well today is our guy's (Special Boy, as Kayla would always call him) 28th birthday. It's hard to imagine Shane at 28. He was always such a kid at heart. I think a lot about all of the new technology out there since he died, and how he would LOVE it all (phones, computers, TVs, games, other devices……). I think my birthdays with him would have gotten very expensive over the years. I wanted to make a trip to Ann Arbor yesterday to see everyone (or those who are left), but the timing wasn't good. Shane was there for his last birthday (10 years ago). He was feeling really good since being released a couple of weeks prior from everything crashing down on him (the tumors in his head spreading), and they ALWAYS made him smile……. me too. I'll get there soon.
News around here………. in two weeks Adam graduates from college……. for GOOD!!! He will be graduating from CMU with a doctorate in Physical Therapy……YAY…… FINALLY!!! What a long, EXPENSIVE, road : ) Once he graduates he really can't get a job in that field until he passes his PT exam, which is sometime in the summer. There IS a light at the end of the tunnel. No definite plans for the future yet (unless he's not sharing them). He tells me that he is taking one thing at a time – finishing this internship, his final projects and writings, graduating, studying for his test, passing his test, then ???? Rachel, his girlfriend, is in med school at Michigan State (booooooooo – Shane made me say that – ha, ha). She still has a few years to go so I'm sure he will take that into consideration also. He is so close to getting what he has worked hard for.
More news………. I am going to be a grandma. Kayla is expecting a baby in mid October. She doesn't know what she is having yet, but in a few weeks she will be able to find out. So this would make Shane an uncle (cute thought). I wonder what kind of advise he would give this baby for living with its mother………..many things are going through my head right now that Shane might say : ) ………. He always did say that, "If Kayla ain't happy, ain't nobody going to be happy." That would probably be a good thing to share with him, or her (ha, ha). I have already begun to purchase too many things. There goes my plan to pay off some of my bills this year. She is still working at Beaumont doing her Child Life Specialist job. In the late fall last year she got the idea to be a foster mom to a mother dog and her puppies until they could be adopted out (she lives too close to a shelter down there). I think they are American Bull Dogs (or Boxers???). All I know for sure is that the mom is a bigger dog, the puppies were many (10 or 11), very cute, very noisy at times, and very messy at times. The shelter came and set up a huge cage for all of them to be in. There were tarps all over the place. Once they were old enough to start showing for adoption they started going pretty quickly. By Feb/March there were only a few left. Now she is just down to the mom, who is such a calm, good dog. I hope someone gets her soon.
With spring here I have a lot of memories of Shane from 10 years ago. It was thought at this time (back then), that he would not be around to finish his senior year because of the tumors in his head growing. Yet again, his chemo and radiation did wonders and he was able to not only go back, but go back the week that his senior class had arranged a class picture to be taken to be given to him from them. There he was, in that picture, front and center. He was also able to make the trip with the band to Washington D.C. over Memorial Day. He wanted that trip so bad, and even though parts of it were considered the trip from h@ll (not able to reach some concert destinations because of traffic), I am so glad that he was able to go. In June it will be 10 years since he graduated from high school. What a special day that was. All that he had been through, all the school that he had missed over the 10 years that he fought his cancer, and all of the times that the doctors thought that he would not live to see that day………. that day was definitely a gift.
So many memories (thank you God), so many 10 year anniversaries of things to pass (I can do this)……… Shane had a shirt that he LOVED and he wore it often. It was just a round face of a male with a ball cap with an "M" (of course) on it, with sunglasses (of course, again), big smile, his face was half blue and half gold (big surprise - ha, ha), with the words on it "Life Is Good". All the traveling, the pain, the tests, the treatments,.... he still lived his life to the fullest, and believed whole heartedly in that statement.
Since this Is Shane's 28th birthday I plan on having some pizza today (his favorite alternate birthday cake)………. I hope you will too!
Take care everyone, and keep remembering Shane <3
HAPPY BIRTHDAY SHANE..... LOVE AND MISS YOU...... STILL!!!
This was always a big day around here…….. the BIG game! The flags, the decorating, the food, the yelling at the T.V. (and each other at times)……. it was fun! I am not feeling very lucky today about this game, especially with it being an away game, but if our guys actually all show up mentally………. it could be a good one……… GO BLUE!!!!
Things around here are kind of slow right now. Kayla bought a house in Clawson (about 20 minutes north of Tiger stadium) in June. The day before we were going to start moving her things in she had some water in the basement. Not a lot…. but enough on the floor that we know it was an old problem. It passed two different inspections so who would have thought. It's been an ongoing process/battle that is not over yet. We found out that the realtor that was representing the seller at the closing, actually owned the house before the guy that Kayla bought it from. She has gotten bids on what it would take to fix the problem, contacted the selling realator to contact the person she bought it from, and is now contacting a lawyer (hoping to get them to pay at least half). Other than that it is a really cute house, in a good location, and only 10 minutes from her work. Of course she wanted every room painted a different color, so that's what everyone did for the first week after she bought it…….. taking turns going down and painting a room : ) It all turned out good…….. now she needs to get started on all of her Pinterest projects.
Adam worked the summer where I work so he could put away a little money before he started his internships. We moved him down to Grand Rapids in August and so far so good. He's working at Mary Free Bed, which I have heard a lot about the last few years as far as accident victims going there for therapy/rehab. It's too bad Grand Rapids isn't just a little closer, there is quite a lot to do down there. He didn't get chosen for his winter internship in Grand Rapids (there were 3 spots and 5 people who picked there), so starting in January he will drive from Grand Rapids to Kalamazoo every day. I can just imagine the gas bill now : )
Football season was always one of Shane's favorite times of the year, and to have Halloween fall during that time only made it that much sweeter. He would always start planning his Halloween costume right after Labor Day. Some of them were just so "Shane". Here's a blast from the past……..
Steve Urkel was one of my favorites.
Happy Fall everyone….. I Love this time of year!
AND………GO BLUE!!!
Friday, April 26, 2013 06:33 AM CDT If anyone would have told Shane when he was here, that it was going to snow 2 days before his birthday……… he would have said that they had lost their mind. But it did, and it was coming down pretty good for a while in the morning. He would have LOVED it!!!! It is so hard to believe that Shane would be 27 years old today. The pictures above are some from over the years. The one that has the cake with the cross on it is from his 8th birthday and 1st Communion that we celebrated together. Four months after that picture was taken he was diagnosed with cancer. You can tell in the picture that the Horner's Syndrome from the tumor in his shoulder/back area was already showing in his eyes. Some pictures from back then I can tell now and see the difference, in other pictures his eyes looked normal. But in all the pictures (except for his 1st birthday, for some reason), even after his diagnosis and sometimes in the middle of treatments, he's smiling in them all. That was Shane!!!
Today's birthday in heaven for Shane is a special one. He has a new friend with him to celebrate with. Someone that helped him here to cope, smile, face his fears, made him laugh, and helped him have fun. Fr. Vern was the priest at our church when Shane was diagnosed. Shane was an altar boy at the time, and he LOVED doing it. He truly liked everything about church. Never complaining about going on Sunday or going to religion classes on Monday night. I think a lot of the kids liked Fr. Vern. He was soooooo tall to them. After church he would stand in the back and give everyone a hug on the way out. The kids would laugh because they would get lost in his gown when he wrapped his arms around them. When Shane lost his hair for the first time he struggled so hard with the thought of going up in front of church to be an altar boy without his hat on. He knew that you weren't suppose to wear hats in a building, especially church. Fr. Vern talked to him and told him that he had no problem with his wearing a hat up there. He went on to tell him that a lot of men in church wear a hair piece which he thought could ALSO be considered a hat ……… then he let out a laugh, and got Shane laughing too. Shane wore his hat up there for awhile, then he just went up there with his bald head. During the winter Fr. Vern would ask if we were coming back to sled on the snow hills from plowing the parking lot. He would then get a couple pushed up pretty high for them before we came back. After church on the way out he would always bend way down and rub his bald head on Shane's bald head, telling him he was doing it for luck. Shane would laugh, then check it in the mirror in the car to see how red it was from all the rubbing....... Fr. Vern passed away on Holy Saturday. Hia funeral was at our church the week after. It was a good service, with a lot of smiles. He had retired the year of Shane's first bone marrow transplant (94) after being at our church for ten years, and moved up north to a house he had on the water. The picture below is from when we went up there to see him (the 1st, and only time the kids had boiled hotdogs (I loved them)). I had the picture enlarged, framed, and it's been in our living room ever since.
As much as he meant to Shane, words can't express what he was to me, or for me, during that time. Going to church back then for me was like going to a pep rally at school before a game. The 'game' to me being the week that started the next day. He made it that way. Thank you Fr. Vern for giving me that strength back then!
Things around here are getting to be a little eventful. Adam's lease is up next week so most of his things will be coming back here. He still has classes through the summer at CMU for his program, but he is either going to drive, or he has a place there lined up for some of the time. In August he is moving down to Grand Rapids to start his internships. The final phase of his program……. YAY!!!! If all goes according to plan he will graduate in the spring. Rachel (his girlfriend), will be starting medical school at Michigan State (Shane would NOT be happy about that), in August also. She picked the Grand Rapids campus so she and Adam would be together. Hopefully that's where they let her go. She'll find out in a couple of weeks. Time is sure flying by. Adam turned 24 on April 5th……….. HAPPY BELATED BIRTHDAY, Adam! : )
Kayla has started house hunting down in the Royal Oak area. She LOVES her job at Beaumont Hospital (Tim recently got a job at Metro Airport), and plans on staying, so she decided that she doesn't want to keep wasting money on rent any longer. House hunting has been fun, challenging, and discouraging. The houses down there are going so quickly. There are offers on them before the sign is even placed in their front yard. A lot are being sold for 'over' the asking price, really. She'll send her realtor a list of twenty that she likes. The realtor can only show us four, because all the others have offers on them already. She's placed offers on three so far, but lost out on two. The one that accepted her offer recently she just passed on a couple of days ago after an inspection on it. Back to square one…….. again!
There is a picture of Shane up right now in the new Motts hospital down in Ann Arbor, on the Wall of Life. I plan on getting down there soon to see everyone again, and to get a picture…… of the picture. I'll get it on here when I do.
So..... for Shane's birthday I am hoping to see at least ONE snowflake (I don't think it's going to happen though), that would make for one HAPPY angel. Thank you for still checking on us, and for thinking of Shane!
Don't forget to get some pizza today : )
Love you, Shane……….. HAPPY BIRTHDAY!!!
Friday, November 30, 2012 07:16 AM CST Sometimes when I write these I write some, I erase some, I delete some, I start over . . . . . sometimes the words just aren't there. This may be one of those times.
I have always had a hard time saying good-bye. When I was growing up my family would always take a 1–2 week vacation in the summer. Sometimes we would stay the majority of the time at one place, sometimes we would break it up to a couple of different places. I ALWAYS hated the end of the trip when I would have to say good-bye to the new friends that I had made. I am also bad about TV shows ending that I've grown attached to. Stores that I like going out of business, restaurants closing, the end of a school year, the end of the seasons . . . . . . good-byes have always been hard for me. When Shane died there were no good-byes. It was a topic that he refused to talk about. I really think at times that he thought he was going to live forever, or maybe because he knew that he would never really be that far from us, so there was no need to talk about good-byes. I feel his presence so much, and see/hear so many things throughout the day that remind me of him…….. he really is, still, so much with me.
The day after Thanksgiving I use to always run into Stacy (Shane's locker partner) while I would be Black Friday shopping. This year the way the stores were opened on Thanksgiving and throughout the night, I doubted that I would see her. I didn't even begin my shopping until around 10:00 Friday morning. Sure enough, before I left my first store I ran into Stacy. She looks exactly the same as she did in high school. Shane would get a kick out of the fact that she is now married and has 3 kids (2 girls and 1 boy). She has 1 daughter that may give her a run for her money and every time I hear a little story about her, I can picture Shane nodding and smiling. The picture below is of Stacy on her wedding day a few years ago, wearing a U of M garter belt. A little reminder of Shane with her on her special day.
The day after Thanksgiving was the day Shane considered the 2nd biggest football game of the season, Michigan against Ohio State. I really thought we had a chance this year to pull off a win, and it was close for awhile, but it just didn't happen. Every Saturday during football season I get balloons to take out to the cemetery. One U of M balloon, then 1 blue and 1 maize. While I was getting them on Saturday Stacy pulled up next to me. She was there to pick up balloons for a birthday party. I had Shane's grave blanket in the back seat all decorated with U of M, then the balloons were in there also. Before she saw it was me she said saw it all and thought that 'someone must be a big fan'. On my way out to the cemetery I pass a house that also belongs to a U of M fan. Right after Shane died and I started making my trips out there, it was always an emotional drive. On my way back I would pass a house with 1 - 5 Michigan flags hanging up during football season, and it would bring a smile to my face. One year I sent the resident a card thanking him (crazy, I know) for making me smile. I explained a little about Shane, my trips past his house, and added a picture of Shane's bench with it showing the U of M side. Last year when football season started the flags were out again the first couple of weeks, then they were gone a week. The next week when I drove by there was a hand written sign stuck in the yard saying something like, "Whoever took our flags, please return, no questions asked." I couldn't believe it. I also couldn't think of driving by there on Saturdays and not seeing them, soooooooo, I went to Shane's favorite store, "The Great Divide", where half of the store is U of M, and the other half is that "other" Michigan team as Shane would say, and I bought them a flag (Shane would have also said that if they had been flying MSU flags they would have still been there because no one would have wanted them, ha,ha). During the week I stuck a note in the bag with it and put it on their porch. On that Saturday when I drove by, there it was hanging in their front yard. On the way back from the cemetery I ended up stopping at the light that is right in front of their house. In front of the flag pole was a hand written sign that said, "This flag is dedicated to Shane Rezmer." How special!!
On this day 8 years ago I worked for the school district that the kids went to school at. Shane was diagnosed with his cancer just before he started his first day of 3rd grade, so by 2004, the year he graduated, there were a lot of teachers and staff that knew him, or of him. When graduation time from high school came we had just been through the biggest scare of Shane's journey with cancer. In the spring the tumors in his head had grown. He was released from the hospital on hospice (the 2nd time), and we were told that him still being with us at graduation was probably not going to happen. Even after he was able to go back to school sometime in May, deep down I knew exactly where his journey was headed. I didn't know when, but I knew. For his graduation party I decided to invite everyone. Everyone he ever had for a teacher, a nurse, a friend…….. deep down I knew it would be a "good-bye" for most of them, even if they didn't know it. They were told not to bring a gift, just themselves, to celebrate Shane's big accomplishment. It ended up being HUGE (had to send my brother for more food a couple of times). All of his grade school teachers and principal came, staff, some from middle school, and some from high school. His favorite nurse and her family stopped on their way home from up north……. it was great, and boy was he exhausted the next day. When I worked in the school district if there was a snow day, or if we needed to be closed for any reason, there was a call chain that would be followed. Everyone was assigned a person to call to inform them of the closure. It would start with the Superintendent, and then filter on down throughout all of the staff. On the day that Shane died, some of the buildings used the call chain to tell everyone. Shane would have been highly impressed (smile).
The year after Shane died his friend, Diane, was going to school at Oakland University. She was in charge of (or working on) their Relay for Life that year and asked me if I would write something to read at the opening. I am not one who likes to be in front of people (just ask my kids, my neck would get really red and blotchy whenever I had to read in church), but I said yes. I told a short version of Shane's story with cancer, how life was so far without Shane, and about how much money really goes towards childhood cancer research. There is a part of what I wrote that I read somewhere and it has stuck with me ever since……….. "When you are a child and lose your parents you become an orphan. When you are married and lose your spouse you become a widow, or widower. There is no name to describe a parent who loses a child, because it is just so unimaginable."
We love you Shane (and KoKo), and still miss you like crazy!!! Happy Anniversary in heaven!!!
Oh, and sometimes when I write these I get going and keep going, and going …….
Thursday, November 22, 2012 8:44 PM CDT So thankful for my memories : )
Wednesday, August 29, 2012 8:44 PM CDT
(I miss being able to have a slide show on here. If anyone knows of a site that I can use (for free) please let me know (my old site closed).....thanks!!)
I started writing this a few times since spring, but I always fell asleep (ha, ha) while doing it. The last time I gave it a good shot was on August 18th, the anniversary of Shane's tumor being found. I was wearing my "Cancer Sucks" tee shirt (because it was a "Sucky" day), and the Red Green Show was on. What are the chances….. it was the show that we were able to go to the taping of. Even though Shane wasn't feeling the greatest at the time, he loved being there and being in the audience. One of my biggest regrets ever, is that I didn't try to help Shane meet Steve Smith (Red Green) while we were there, and that I didn't try to get him in on the 'lodge meeting' at the end of the show. There really are no words that can express how excited he would have been : ) I love seeing this episode when they show it. Lots of memories. In the spring I had the chance to go to a performance by Red Green and meet him. I was going to go at first, then the more I thought about it, I couldn't see doing it without Shane. It just wouldn't have been right.
Well here is our news . . . . . Kayla moved back to Michigan in March because she got a job in Child Life at Beaumont Hospital in Royal Oak. She LOVED her time in Tennessee, and LOVED the children's hospital that she worked at there. Her job at Beaumont is in the Emergency Department most of the time, and then up on the floor with the kids one day out of the week. It's a brand new program there (in the Emergency Dept), so she has her work cut out for her getting it all together, running it, and being accepted. She's finding out that some people don't accept 'change' to easily. In May (you're not going to believe this one), a couple of days before Memorial Day Weekend, I found myself in . . . . . . . . . . . . . Washington D.C. Did I not go there at this time 8 years ago? Was it not the trip from @ell? What was I thinking? Kayla had to go there to take her test to be a "Child Life Specialist" (kind of like the Bar Exam for lawyers (ha, ha)). We flew into Maryland, then drove an hour to get to our hotel. Very interesting route the GPS took us on the way into D.C. ……. in the dark. The route on the way out made much more sense, and was a lot quicker. She studied for awhile after we got checked in (around 10:00), and got up early and went down for the test in the morning. While she was doing that I hopped on the subway (I LOVE riding on subways for some reason) and went over to the Washington Monument area. LOTS of walking, and I didn't have the best shoes on to be doing that. We were there and back in less than 24 hours. Even though 8 years ago our trip was considered a big bust, it was nice for me to revisit some of the places that we went to there with Shane. A few weeks after we got back Kayla found out that she passed her exam…………. she is now officially a Child Life Specialist. YAY!!!!!! Shane would LOVE it!! Kayla's other big news is that just before Easter this year, at a Detroit Tiger's game, she got engaged. She and Tim are planning a 2014 wedding so she has just started looking around for venues and ideas.
Adam has completed his first year at Grad school at CMU (1 1/2 more to go). He completed a small internship in the spring and he liked it, so I'm glad this is what he picked as his goal (Physical Therapist). Even though he is still in college, he still likes his sports and I was able to watch him play a couple different games of summer ball this year. A little hot, but still fun to watch. His room mate from Alma is getting married in the fall. He asked Adam to be his best man. He and Jake found out the summer after high school graduation that they would be room mates and team mates in football. They have been together ever since. What a duo!! Kind of like brothers. Adam and a group of others went down to Nashville a couple of weeks ago for his bachelor party (that's where Jake currently/temporarily lives). Kayla would have liked to have gone with him, but she had to work, and I know that Adam wouldn't have offered (smile).
So, the reason why I picked today to write (not just because it has been so long), is because it is KoKo's birthday. Anyone who knew Shane, or has followed Shane's story, knows that KoKo was the most special gift that Shane received 18 years ago. The fun, smiles, comfort, support. . . . . . . . all that and SO MUCH MORE he gave to Shane. Last fall I put together a book for Shane's 2nd grade teacher. It was called "The Story of KoKo and Shane". She was Shane's favorite teacher (Kayla and Adam had her also), and she was the person that gave Shane the gift of KoKo all those years ago on the 1st day of school, when he was still in the hospital from his initial surgery (I had come home for the day for Adam's 1st day of Kindergarten). The book ended up being about 30 pages long with many pictures, stories, and lots of fun memories. She had heard so many KoKo stories over the years, I wanted her to REALLY know the impact that he had on Shane's life through all the years of treatment (especially when he was young), and all of the fun memories we have of him, and to thank her for her special gift. Before I gave it to her I told her it was not meant to be a sad story, but a happy one. She got tears in her eyes when she saw who it was about, but then laughed as she went through it. It truly is a happy story.
Once again . . . . . . . life goes on. I still have my "Cancer Sucks" days, but I truly believe that it would be wrong if I didn't. This past year has seen the death of so many young children from cancer. One from our school district that was 10 years old, a little older than Shane was when he was diagnosed. September is Childhood Cancer awareness month. It is so sad to see the publicity that it gets, compared to Breast Cancer when October comes. Things need to change, and 'lack of profit' needs to stop being the reason that Childhood Cancers don't get the drug studies that they should. Just my vent for the year (sorry).
Last weekend everyone was home. On Saturday we all piled into the truck (with boyfriends and girlfriends) and went to a Tiger's game.....
(thank you God for them winning, or it would have been a LOOONNNGGG ride home). On Sunday we all piled in the truck again and went up north to my father-in-laws for the afternoon. Have I ever talked about how Kayla is not the easiest person to be in a vehicle with for a lengthy amount of time (she almost didn't make it back with us from TN - ha, ha). We had talked about her and I driving to D.C. back in May to make the trip cheaper …….. then I thought about it and woke up (smile). It was a fun weekend last week. Adam and I were talking a little while ago about how the week before school started we would always have a movie week. Shane LOVED his movies! Each day they would decide which ones we would be watching. A lot of times it would end up being a trilogy (48hrs, Rush Hour, Star Wars, 3 Ninjas………). The week would be spent pretty much together in the living room with pillows all over, pizza, popcorn, pop………. More fun memories.
Well I'm sure that I'm going to be in trouble for this entry. Adam's birthday came and went with no pictures, wishes, or updates. Kayla's birthday also came (yesterday), and went with no pictures, wishes, or updates. I picked KoKo's birthday to finally do an update (ha, ha).
Oh……….. HAPPY BELATED BIRTHDAY……. ADAM AND KAYLA !!!!! (ha, ha)
Thursday, April 26, 2012 9:30 PM CST
There are memories to write about, news to right about, and just .... stuff to write about, but I'm either too tired, not enough time ..... or something ????? I'll be back soon with an update. My big guy would be 26 years old today..... hard to imagine. Still thinking of him daily, still missing his big smile with his eyes gleaming, still missing his voice, laughter, one liners, knowledge, computer skills :) .......
Love and miss you Shane!!!
Wednesday, November 30, 2011 9:30 PM CST
Seven years. . . . . . . when you think about all that has happened in the world, and in our own personal lives, it seems like a really long time. Everything in my life seems to be broken down in three time frames….. Before Cancer….. During Cancer…… After Death. I see newer buildings while I'm driving around and I think, was that there before Shane died? Did he ever see it? I see dates while I'm working and my mind questions which time frame it falls into. In seven years Kayla and Adam have both graduated from high school and college. Kayla has moved (numerous times – ha, ha). Adam has pretty much moved. Some of Shane's friends have gotten married and started their own families, a new Mott Children's hospital has even been built . . . . . . So many things have happened and changed since Shane died and seven years is quite a long time, but for me, I still have a strong feeling of his presence everyday. It's like it was just yesterday that he was here. Maybe it was all the time we spent together, especially those last couple of years. All the hours on the freeway having fun, or just being quiet, but knowing he was there in the back seat. I knew him so well, knew what he was going to say sometimes before he even said it. Whatever the reason, I am SO glad for that feeling that I have, and SO grateful for my memories.
A couple of weeks ago I went to Ann Arbor to walk through the hospital (the current one) and visit with anyone that may have been there. I found Devyn first and had a nice visit with him. I got him caught up on Kayla and the happenings in her life. What a crack up. He always brought a smile to Shane's face, even when he was feeling bad. Sometimes just by walking into the room and not saying a word. I then went to clinic and found EVERYONE there. I think that's the first time that has ever happened, all there at the same time. It was SOOOO nice to see them all again, talk about Shane, and get caught up on their family news. When I left clinic I walked over to 7 West. I had taken my camera so I could get pictures . . . . . the 1st hallway when you get off the elevator. . . . . the park/play area . . . . . the outside to Shane's first room there ever . . . the phone booth that I spent soooo much time at before I got a cell phone...... I just needed to get a pictorial for those years that Shane spent going there before they close it off after the big move. A few days after that I went back to Ann Arbor for the Open House at the new Mott. WOW!! I only went to the 8th floor and then down to the 7th (play area and then inpatient oncology floor and outpatient clinic). Shane, I'm sure, would approve. It doesn't seem very 'nurse friendly' though. Everything is really spread out. They're going to need some really comfortable shoes on for walking when they work. The one thing that I really like is that they used a lot of colors throughout the whole building. It just brightens the whole place up.
Not a lot has happened around here. Kayla was able to come back for a few days for Thanksgiving. She is done with her internship, but she was offered a part time position at the hospital down there covering for a maternity leave. She accepted it, so she'll be there another three months at least. Adam is studying, studying, studying (according to him – lol). He will be back for Christmas break in a couple of weeks. I'm not sure what we are going to do about Christmas this year. Kayla can only come back for that weekend and then she'll have to get back to TN. Should I get a tree? Should I not? Decisions, decisions, decisions. I know Shane would have a fit if I talked about not having a tree and he were here, we'll see.
Last night as I was coming home and the snow was covering the ground for the first time this season, in my head I heard Shane singing jingle bells. The last rule for that between he and I was that he couldn't sing that song until the snow stuck to the ground. Our earlier rule was that he couldn't sing it until the first snowfall (he would sometimes start singing it right after school started just to get me going so I had to come up with some rules – ha ha) That rule had to be changed because sometimes the 'first' snowfall around here can be in October and I really didn't want to hear 'that' song in 'that' month. We had our fun times that I will always remember.
Happy 7th Anniversary in heaven Shane!!! We miss you still (and KoKo – ha, ha)!
Hey...... how about those Wolverines beating Ohio State...... FINALLY!!! (sorry Angela - smile)
Monday, October 31, 2011 8:33 PM CDT I made a trip to Ann Arbor today. It has been almost 2 years since I went and visited with anyone. I saw a notice online last week that the new Motts Children's Hospital will be opening in December and that there is an open house this Sunday. I had decided then that I wanted to go. The day after that I got a card in the mail from one of Shane's night nurses telling me about the open house also. I thought since the new hospital is almost ready to open I better get there and see the old hospital one more time before they start dismantling it, so I went today. I was lucky that I got there early enough to catch Devyn (Shane's partner in crime/Child Life then, Recreational Therapist now), before he left for the day. I had a very nice visit with him. We talked about Kayla and how close she is to her goal of being a Child Life Specialist, and just a lot of catching up. I went to outpatient surgery to find one of the nurses there that use to always call us with Shane's time for procedures and with the lists of his dos and don'ts. She would then always put in a request of what she wanted Shane to wear (I think at first it was to see if he would do it, which he did, then it was just for fun and became a tradition). When I got to the department though, I found out that she had retired on Friday. Ahhhhhh……. I was one day late. A few years ago when I had gone to visit I had gone into her office to leave her a note. Shane had already been gone for a few years then. On her bulletin board at her desk was Shane's senior picture that he had given her. What a special moment. I didn't get up to 7 West today, but I knew that the 2 nurses that are still there that I know had today off. When I got to outpatient clinic, it was my lucky day. EVERYONE was there, on the same day, at the same time. I don't think that has happened since Shane died. They weren't busy because all the patients were gone (in a hurry to leave today for trick or treating). It was SUCH a nice visit. A lot of old story telling, and reminiscing about Shane. Mary Jo, Marsha, Martha, Suzie, and of course Sheila, were such a big part of Shane's life, and mine, especially the last few years of his life. At times we felt like we lived at the clinic. The summer of 2004 Shane laughed and thought we should change our address to there (ha, ha). It was a very special visit!!! Today was the 17th anniversary of Shane's 'first ever' chemo. Yes, I am like Shane, or maybe he was like me. Life is full of numbers and anniversaries and they always seem to come to my mind. Even though it was 17 years ago, at times it seems like yesterday. Back then we knew we had to be in Ann Arbor on Halloween to start his first chemo. I had called a few of the neighbors and some family, and asked if we could bring the kids trick or treating the night before Halloween so Shane wouldn't miss out on it completely. It wasn't the same, but he was happy with it. Walking in the hallway to 7 West that day should have been scary, but it really wasn't. He had already been there a couple of times already so he had already bonded with quite a few of the nurses on the floor already. THEN he found out that he would be able to trick or treat there before his chemo started. He was then happy. That first course of chemo lasted 5 days and went off without any problems. It was the beginning of 10 years of treatment, and 10 years of friendships. Below are some of the special people from Shane's life.
Saturday, October 15, 2011 8:12 AM
Not from today, it was toooooo windy out there for pictures (this is the back side).
This is the day that we always waited for every year. The MOST important day in sports in our household. This is the day............. the day of The BIG Game!!!! Ohhhhhhh back in the day there were decorations.... food..... yelling........... it was a fun time (except for the occasional team bashing would get out of hand : ) The weeks leading up to the BIG game Shane would always have me stop at his favorite store, The Great Divide, in Flint. If you have never been to this store, it is worth your trip there. The store is divided in half. Half being University of Michigan, the other half Michigan State. From the paint and decorations on the wall and hanging from the ceiling, to the carpet and flooring. This store is great if you are either fan. There were times when it would be so busy there (especially this time of year), that we would have to park on the other side of the building. Shane would refuse to walk in the Michigan State door, and walk all around to the other side to go in the Michigan door. Once inside he would never cross over. If I wanted to show him something from the State side I would have to walk it over to the dividing line on the floor. The cash registers are right in the middle of the store and are set up so there is one on each side. Too funny!!! During test time at the hospital, especially when he was younger and would have to get an MRI, I would be half crawling up the end of the machine coaxing/bribing him to lie still for just a little while longer. Offering to stop at 'his store' on the way home usually worked. I know I've mentioned this before, but when Shane died, he had over 30 Michigan shirts that he would wear faithfully. Looking at his school pictures, he had a Michigan shirt on for every one of them from 6th grade on. The one thing that still bothers me, and I can't believe we didn't catch it, is that for his senior pictures he definitely had Michigan incorporated in a lot of them, but we weren't thinking at the time, and the picture that we picked for the yearbook he did not have his Michigan shirt on....... what were we thinking???
Sooooooo....... the balloons are out there, the TV is ready, the flags are out.......... and we (Michigan that is), are ready to win.......... So for the BIGGEST Michigan fan that I know.........
LET'S DO THIS ! ! !
Sunday, August 29, 2011 7:00 AM
Well, today KoKo would be 17 years old. Hard to imagine that. On the 18th of August I thought more than once about that day 17 years ago when we were on vacation and Shane's tumor was discovered. I still think about it, but I don't dwell on itas much as I use to. That day, and a few after that, are still very vivid in my mind. The first day of school that year Shane had to miss because he was still in the hospital from the surgery to remove the tumor. I would have stayed in Ann Arbor, but it was Adam's first day of Kindergarten and that is a day that you just can't get back. I had to be at home. I went to their school after Adam got on the bus to update everyone on Shane. While I was there I was given a large bag for Shane from his 2nd grade teacher (he was going to be starting 3rd). In the bag was this big, furry, black gorilla named KoKo. KoKo never left Shane's side when he was young and getting treatment (except when he was left in the car at the airport, with the doors locked, with the keys still inside, with Shane having to leave for San Francisco without him, and then being lost by Fed Ex for a few days trying to get him out to Shane..... funny now, but ooohhh, not then). KoKo was a comfort to a small boy when he needed it, and a good pillow to an older boy when he needed it, and a source of humor and entertainment for over 10 years to everyone around him. He and Shane are together forever!!
Miss you KoKo!!
Sunday, August 28, 2011 8:45 PM CDT
Today is our little princess' birthday. After I posted the entry for Shane's birthday, Kayla had a couple of interviews for the Child Life Internships she had applied for. The first one was in Madison, Wisconsin. She wasn't too happy about paying all of the money to go there for an interview, but she went. After spending over $200 for that one and then receiving a "We regret to inform you……" from WI, she got a phone interview with a hospital in Kentucky. While she was waiting for a response from there, she had another phone interview with a hospital in Tennessee. She was excited about the TN interview because she said they sounded more bubbly and upbeat. So she waited, and waited, and finally got a phone call back from both. Kentucky called to have her come down for a personal interview, and then Tennessee called to say that she got the position. THIS made her VERY happy. We went to Knoxville in July to find her an apartment. She and I had this plan that we would drive down (about 8 – 9 hours), get there late afternoon, drive around crossing places off of our list and adding others, then get up early the next day and find one within an hour, then be on our way back home. Hahahahahahahah……. well, it was a plan. It almost worked. It took us over 3 hours to find one, and we were starting to get worried that we wouldn't. She only needs it for 3 months, but it's a college town (University of Tennessee – Shane would NOT be happy because they are #3 for largest college football stadium, U of M, of course, is #1), but we finally did find one. We moved her down on the 19th and she started her internship at East Tennessee's Children's Hospital on the 22nd. So far, so good. She's done with orientation and now she's starting to see patients. She LOVES it down there!!! Yaaayyyyy, Kayla!!! Oh.... I have NEVER seen her bedroom here look so clean (ha, ha)!!!
There is a girl named Alice that lives in Ulverston, England. She is 15 years old and has cancer. She knows that she will not be cured, so she started a 'Bucket List' (so sad that a 15 year has to think of a bucket list). One of the things on her list was to design an Emma Bridgewater (popular in the UK) mug to sell for charity. She then wrote that she would like pictures taken of her mug around the world. How could I ignore that? I ordered and received my mug, and then sent it down to TN for Kayla to get a picture taken with it. That proved to be a little harder than we thought. She said she drove around a lot but couldn't find any signs that said Tennessee, or even Knoxville, that were low to the ground (that's why she ended up buying the t-shirt for the one picture so you could actually see the mug). I'm hoping to get them emailed to Alice this week. Here's the address to her blog - http://alicepyne.blogspot.com/
Adam is all moved into Mt. Pleasant. He has a new roommate and things are going well so far. He gets a little stressed at test times, but the summer session is over and it was a nice preview to the fall semester. Hopefully it won't get too overwhelming for him. Rachel (his girlfriend), moves back to Alma on Friday for school and then she'll only be about 15 minutes away from him. I'm not sure if that's good or not (ha, ha).
Well, I am still working so that must mean that I didn't win big in Vegas. We went and had a good time, but no one won anything really. The one thing that I wanted to do was to go to the M&M World Store, which I did. Four floors of everything M&M's. I almost spent more money there than I gambled away (not really). I had wanted to go there since we had planned to take the kids back when they were in high school during spring break. That was the trip that was cancelled for us the morning that we were to leave because Shane was having pain in his hips and ended up in the hospital. There was a group of us going, so the rest of them still went. When they got back they told us that the lines for EVERYTHING were long and Shane would have had a hard time probably. Things really did work out for the best sometimes back then. After being there this May, I think that it may have changed over the years. Years ago they were trying to get more families to go there. I don't think now I would take my kids if they were younger. It doesn't seem very "family friendly" on the strip. Maybe if you stayed off of the strip and had a car that you could drive somewhere it would be okay. This trip my mother-in-law, niece, and her husband went. It was fun and I can now say that I have been there.
I was able to see a lot of the kids from school at work this summer because we participated in a free lunch program from a local food bank. Some of those kids are so darn cute and I was able to see a lot of them everyday. There are some that have issues at school, and some that have issues at home, or even both, but given a chance and a little one on one, they become totally different kids. There's always hope : ) Every year when I worked at the schools I would have at least one kid that I would have loved to bring home with me to stay. Some were younger, some were older. Sometimes I think all they need is a change of scenery for awhile, or just some guidance, or just to know that someone cares. I'm 'still' finding those kids while working at the apartments.
Well, summer is ending and college football will begin in less than a week. Shane would anxiously be making predictions about now, especially with U of M having a new coach this year. I just hope we do better than we have the last couple of years. The balloons will definitely be out at the cemetery every Saturday (until they lose anyhow).
That's all for now. Things around here are quiet with both kids gone, but I'm hoping to use this time to get caught up on things. We'll see how that goes. I am really hoping to get down to the hospital sometime in September. It's been over a year since I was there and I know they will be moving to the new hospital sometime in the fall (last I heard). I need to make a walk through 'Shane's' hospital one more time while everything is still there. Just something I need to do for me I guess :)
HAPPY BIRTHDAY, Kayla!!!! You have come a long way, and so close to your goal….. Shane is LOVIN it!!!!
Monday, April 26, 2011 12:24 AM CDT
I have a feeling that his update is going to be all over the place. First though, our "Special Boy's" Birthday…… Shane was definitely into numbers. He LOVED math, and all of the little math games, trivia, and milestones that he could come up with. I'm sure sometime today, if he were still here, he would tell us that he is now a 1/4 of a century old. Just like he did when he was 1 decade old, 1.5 decades old …….. Thinking of those types of things still make me smile. I still wonder what he would be doing with his life now. Would he be any taller (ha, ha), would he be finished with school doing something he liked, or would he still be going because he loved school so much??? Back in January I was contacted by both U of M/Motts (with St. Judes) and San Francisco Children's Hospital within a week of each other. Both were asking if I would participate in a study regarding children's cancer, and also long term effects. One was a long paper questionnaire, the other was a 45 minute phone survey. I'm not sure how much information I gave them was useful, but it's kind of nice to know that Shane's name still comes up from time to time in the hospitals. Some of the phone questions made me laugh because thinking of Shane I wanted to answer them one way, but to be honest and accurate to the question I had to answer it a different way (ha, ha ~ Shane would not have been happy if he knew all of the funny things that I 'wanted' to say). When I think of all of the birthdays that we were allowed to celebrate together, there are a few that I remember more. There was one when he was little (4ish)and he got some Ninja Turtles action figures. He was sooooo excited and went on and on and on....(so Shane), about that's what he 'always' wanted (he loved small, simple things)! Then his 10th birthday just before his transplant. He asked for such different things that year. A little swivel rocker to take to the hospital, a garden globe (blue, for U of M of course), and a sundial with ducks flying over and the words "Time Takes All But Memories" on it. I still have it, and I still put it out. And finally, his last birthday, his 18th birthday, his last one here. I still think the best place to have celebrated that one was right where we were…….... the clinic at U of M. He was there for chemo, he had just gotten over the scare of the tumors in his head and the radiation there to relieve his symptoms, and once again he was beating the odds of what everyone had predicted only a few short weeks earlier (Adam's birthday time). He had finally made a turn towards recovering again, and they helped him celebrate his birthday there big time. It was the best place that we could have been that day, and we were home later in time to celebrate again. The things I remember keep me going, and make me smile. The things I may forget over time, hopefully, I have written them down here at one time so I can go back 10 years from now (or maybe tomorrow, ha – ha), and read them to refresh my memory.
I do believe that this was the first Christmas that I ever missed writing anything for. November was rough. December didn't get much better. My mother had back surgery before Thanksgiving and I came to the realization that my days of being a caregiver are over. I think I've lost my patience in my old age. Shane would have been yelling 'abuse' had he been here (ha, ha). I've lost my touch. Christmas came and went so fast. I think we put the tree up the weekend before, and finally had it completely decorated 3 days before. Not our usual routine.
Kayla did graduate in December from Eastern. She didn't go to the commencement ceremony (that is 'not' a Kayla thing), so we just all went out to eat on the 'would have been' night with family. She was happy with that. Shane use to always say, "If Kayla's not happy, ain't nobody happy" (he use to say that about one of his nurses in clinic too (always in fun)). Her job is going 'okay'. She calls me everyday on her way home and says that she quit. She's not too happy with it because her first goal is to be working with kids. She just got done sending out a bunch of applications for Child Life Internships around the U.S. Hopefully she'll get one of them. We'll wait, and if she gets one we'll worry then about where she'll stay and how she will do it. Until then she's saving her money (ha, ha, ha, ha – that's a funny one).
Adam is in his last season, ever, of baseball. Hard to imagine not having any ballgames of any kind to go to soon.
He's doing pretty good his final year. In March they played the U of M team, not the club team, but the actual team. It was an exciting game going 12 innings before we lost 4-3. Sometimes he struggles, but then he makes a comeback when the team needs it. He graduated from Alma on Saturday. Hard to believe another 4 years have flown by.
(He's still a dork!!!)
He handles things like this better than me. I HATE good-byes. I think it bothers me more than him that his friends from there, and especially his roommate that he kept, or that put up with him for 4 years, have already gone their separate ways. Adam has another 2 weeks there for ball before he is completely done. After that the four of us are taking off for Las Vegas for a few days to celebrate their both graduating (and to try and win back some of that student loan money – ha, ha). The day after we get back Adam moves to Mt. Pleasant to start Physical Therapy (Grad School) at CMU. Funny how Kayla went to U of M for part of her schooling (Child Life hours for Eastern), and now Adam will be going to Shane's other favorite school. I kind of shorted him for his birthday a few weeks ago on here. We've been doing some traveling during the week for ball and I look forward to going to bed when I get home (old age – again).
As soon as things slow down here, or I find that 28th hour in the day (ha, ha), I plan on getting a picture of both of them together in their cap and gown and putting it on here (if I can get them at the same destination at the same time).
I took Shane's CD case to work a while ago. I get tired of listening to the same songs on the radio after awhile. What a variety of music he had collected over the years. Listening to his CDs was nice. Music really does take you back to certain times and places. More smiles. Where would we be without all of our memories?
The days don't seem to be slowing down at all, and there is definitely, still, not enough hours in the day to do everything. Life goes on, and I just go with the flow. Auto pilot always worked best for me back when Shane was here, and it still does..... Before I end this, I want to ask that you please keep saying prayers for all of the kids and young adults who still struggle with cancer, and are in the fight for their life. There are so many....... still.
Thank you for still checking in on us, and especially for still thinking of Shane!! (my goal for the summer………. to make the grass grow at the cemetery – STILL!!!!)
Don't forget..... have a piece of pizza today, for Shane!!!
LOVE YOU!!!
Tuesday, April 5, 2011 12:00AM CST Pretty much just a picture change..... My baby is 22 today, hard to imagine. Shane would call Adam his "Little, Big, Brother" - too cute. Shane came up to about Adam's elbow, maybe a little bit higher (ha, ha). Adam has a game today down at Albion so that's where I'll be going. It's hard to believe that he only has a few weeks left and he'll be graduating. I thought his four years in high school went fast, his four years of college have just flown by. We found him a house in Mt. Pleasant to rent. He'll be moving in there a couple of weeks after he graduates. I have a feeling this next month is going to get a little crazy(ha, ha).
I'll be back again in a few weeks for Shane's birthday. I'll save all of the 'recent goings on' until then.
Tuesday, November 30, 2010 5:23 AM CST
What can I say…….. that I still miss that bald head that I could rest my chin on when I would walk up behind him. That I still miss sitting with him and watching all of his goofy TV shows. That I still miss all of our drives to Ann Arbor together with him in the back seat laughing at all of the freeway road rage (that he thought I caused). That I miss his voice, his expressions, his quick come backs, his sense of humor, his laughter……….. The years go by, but at this time of year, especially this year with the days lining up exactly the way they were six years ago (Thursday (Thanksgiving) was the 25th, Friday was the 26th…..), it just seems like it was yesterday that Shane was still here. The hurt seems to be always lurking in the background, and at times it still catches me off guard, but with each passing year those 'times' seem to be a little less, or maybe they are just more bearable to face. Again, what can I say…… we still miss Shane like crazy!
Not a lot has happened since I last wrote. Well ……….. a few things, big things, but not a lot of things. Kayla is done with her internship at the hospital in Saginaw. She applied for a lot of Child Life internships all over the U.S. (well, from Michigan to Florida and everything east), but she didn't get accepted for one of them. I think it's going to be hard for her to find one because out of all of the applications that these hospitals get, they only accept one per semester. This could take awhile, so she is onto plan B (or is it C, or D???). She will graduate from Eastern in a few weeks with her degree. While she was doing her internship in Saginaw her boss/oversee-er (ha, ha), accepted a new position at a different hospital. She recommended Kayla to fill her position once she has her diploma. The hospital agreed, and offered her the job. She starts on December 20th…… YAY!! She also has enrolled at Western University so she can take a couple of online classes that were suggested to help her maybe get accepted for one of those Child Life internships. Keep your fingers crossed!!!
Adam is still on course to graduate in April. He found out last month that he was accepted at Central Michigan for grad school. He will only have a couple of weeks off in April before his program at CMU starts. Once it starts it runs continuously for three years. Does anyone know of any cheap places to rent in the Mt. Pleasant area??? I believe he is enjoying his senior year at Alma, maybe a little too much sometimes. I know with winter just starting it doesn't seem like it, but really, his senior year of baseball is just around the corner. The end of an era.
I saved my news for last. After working as a Special Education aide for over twelve years, I decided to quit. It was an accumulation of things that made me decide. I guess the turning point for me was that I was finding that I had less patience with the kids. I never wanted to give them the chance to refer to me as the "old, crabby, teacher helper" (ha, ha). I think there were some moments that I was cutting it close (ha, ha, again). I know that Shane is up there shaking his head in disbelief that I did it. I kind of felt like I was getting myself into a negative rut and the only way out was to do something drastic. A full time secretary job opened up at the apartments that I use to work at and so I took that. I am now working until 5:00 every day, and I've given up my summers off …….. what was I thinking (ha, ha)? Really, I like it. It's busy work which is perfect for me, plus I've been given permission to take Wednesday afternoons off to go back to my 2nd grade classroom and volunteer during reading time. I really wanted to finish this year off with this group of kids, and not leave them completely in the middle of the year. The hardest part about leaving was leaving Shane, Kayla, and Adam's 2nd grade teacher that I worked with, and have known for years. It was a sad day when I told her and I will miss all of our reminiscing.
This will be a week of remembering. Today at 4:26pm I will close my eyes and take a deep breath and just wait for the time to pass to 4:27. Tomorrow I will remember ' shopping' (as we said back then that's what it seemed like) for a casket and Kayla picking a pink one because she said that's what Shane told her he wanted. Thursday and Friday will be memories of nurses and child life people making the drive here after working all day, of grade school teachers and old friends, coming to see Shane for one last time and share memories and smiles with us. Saturday will be memories of a few of Shane's special teachers, friends and family, carrying his casket for his funeral. I'll remember getting up to speak during the service, and how I wanted it so much to not be a sad reading, but one filled with smiles, because that was always 'so Shane'. And finally, of the last time I saw his face and the peaceful look he had, with a small smile to go with it. I really believe he wanted to show us that he was happy and at peace. That is the one memory that I cling onto for dear life sometimes. A lot of memories this week, I can do this.
Between now and Christmas I want to try to go down to the hospital for a visit. I've been to Ann Arbor a few times, but mostly for shopping trips. It's been over a year since I saw everyone and I miss them. I guess this time of year I miss them a lot. They were Shane's support, strength, cheering team, and family. We wouldn't have been able to do those 10 1/2 years without them.
Thank you so much for still checking in on us. When you see the snow falling outside between now and Christmas, picture in your head a cute, bald headed boy singing "Jingle Bells" at the top of his lungs. I know I will (big smile).
We love you, and miss you Shane……… still and always!!!
Saturday, October 9, 2010 ~ The Day History Is Changed!!! UPDATE....... Darn it!!!!! Our one man team couldn't do it.
This is the day! The "BIG GAME" is here!! We have a quarterback (we don't have a defense though - ha, ha)!! Come on Shane, help us out!!
Wednesday, September 22, 2010 9:34 PM
Football has started and we are 3 for 3 - YAY!!!!!! Every Saturday morning I get some U of M balloons and take them out to the cemetary. Every year I do it until they lose. A couple of years ago it was a cheap season (ha, ha). Then of course no matter if they've lost or not, the balloons go out there for the Michigan - Michigan State game. Here's hoping that the winning continues!!!!!!! GO BLUE!!!!
Sunday, August 29, 2010 11:02 PM CDT
Always the day after Kayla's birthday, was KoKo's birthday. He was our source of entertainment, comfort, and anxiety (when we he was lost by UPS on his way to Shane in San Francisco). Shane would have had a much harder time dealing with his treatment when he was younger if it were not for that monkey. What a family mascot he turned into as Shane grew older. We miss you KoKo, and all your shenanigans!!!
Top (clockwise) 1st pic together ~ X-mas with Nurse Beth ~ Being a Dr. (nametag and all), with the Dr ~ Showing off our new couch ~ Pretty in pink ~ With U of M football players (Brian Griese) ~ Happy New Year 2000 ~ See no evil, hear no evil (of course that's Shane - ha, ha), speak no evil (with Sean's KoKo too).
Saturday, August 28, 2010 11:49 PM CDT
A few of Kayla's Kodak Moments, and with Shane and Adam.
The birthday girl is 23 today, amazing!! I remember the summer that I was pregnant with her. It was soooooo hot, just like this summer. We had the brainstorm idea that summer to take Shane (who was 1) and go camping in the Upper Peninsula with some friends of ours who also had a 1 year old. Who agrees to that when they are 8 months pregnant? It was so hot when we went, and hard to sleep at night because it never cooled down. Let's face it, it's hard to get comfortable in a bed when you are due in one month, let alone try and get comfortable on the ground in a tent. Oh, and the black flies were horrible. Shane got bit on the ear by one and his little ear swelled right up like Dumbo's. I always refer to that vacation as 'the vacation from #ell.' Shane and I use to laugh and say that may be part of the reason why Kayla is the way she is. She was traumatized (by that summer's heat and trip) even before she was born (ha, ha). When we were going to Ann Arbor to either be inpatient, or just a daily clinic visit, Shane was usually asked by someone down there if he had any 'good Kayla stories'. And of course he could always come up with at least one to tell them. She was Shane's source of entertainment when he needed a smile, and definitely his interior decorator when he would be inpatient for long periods of time. In the spring of 04' we had a trip to Florida planned over spring break (I've told this story before). We had to cancel the trip the day before we were to leave because Shane had to be admitted after he aspirated during his bone marrow test and got pneumonia. It was the first time that Shane felt really bad about a trip being cancelled, but Adam and Kayla were okay with it. Kayla and her friend, Markie (she was suppose to go with us also), felt bad because Shane felt bad, so they taped pages and pages of computer printer paper together and made a wall mural for his room. They glued sand all across the bottom, painted the top blue for the ocean, put fish on it……… it was great!! They brought Florida to him. It sure was a good conversation piece when people came into his room, and it really made him smile when he looked at it………. This summer Kayla volunteered again at Camp Mak A Dream in Montana for a week (Shane's camp that he went to with Devyn back in 2000). She came back loving it again! I think she would do it every year if she could. She then spent this past week in Utah with the family that she works for. They take such good care of her while she takes care of their kids. With her doing her internship here she had to kind of say good-bye to them before she flew back (they had to stay longer because of a death in their family there). They plan on having her go down to Ann Arbor on some weekends to work and spend time with the kids. She's going to miss them a lot!!
Because of Shane, Kayla has chosen a career in Child Life. She never would have known about it if it weren't for all of the time we spent in Ann Arbor. She is done at Eastern (thank God – don't get me going on that one), and she starts her internship on Monday, in Saginaw. Yes, she has moved back home (Shane is definitely laughing about that one). Her internship will be done in December, she'll graduate, then in January she will start her Child Life internship somewhere. She applied to a couple in Michigan, quite a few in Florida, St. Jude's, and then one in PA. By sometime in October she should hear back from them. Things are moving along for her. I just hope that we 'both' make it until the end of the year, living under the same roof again (ha, ha).
Adam will be moving out and back to school on Friday (they're coming and going around here). He worked all summer cutting grass. Not a good summer to have an outdoor job, but I guess the heat didn't really bother him too much. This week he will be job shadowing a physical therapist for 40 hours. I hope they keep him busy otherwise his mind will start to wander (ha, ha – he diagnosed himself with ADHD when he was in high school). He's in the process of applying to grad schools right now. It's stressing him out at times, but he's getting it done (while being pretty vocal about the whole 'online application' process). Both he and Kayla are volunteering at a children's grief camp in September. This will be right up Kayla's alley, but it will be Adam's first time doing something like this. Hopefully he'll like it and find it rewarding in some way. I warned him yesterday that this coming week is going to get a little crazy in the morning. Kayla has to be to Saginaw by 8:30. I have to be to school Tues., Wed., and Thurs., by 8:00, and then he has to be to his place by 8:00. The mornings around here will be crazy!! His eyes lit up when he thought about it and said, "It'll be like when we were in high school." Boy those were the days. I worked at the middle school then so they would all ride with me and I would drop them off at the high school first. Shane was always so slow in the morning. Even when he was feeling good he just couldn't seem to pick up the pace around here. Adam and Kayla would be out waiting in the car, I would be following Shane around inside repeating 'come on Shane', 'come on Shane',….. when we would 'finally' get to school Kayla would always get out and tell the boys to, "Make a new friend today." That was funny coming from her back then. Socializing was not her favorite thing to do. I think we're going to need a little luck this week around here in the mornings. If not luck, maybe some patience.
My summer is pretty much over. I was able to cross off a couple things on my 'list of things to do'. I love that feeling. Shane would be happy, and surprised, that I read a couple of books. I use to always by books when he was with me, but I would bring them home and stick them on a shelf for a later time. There's an area (the triangle) at the hospital where the main hospital meets the children's hospital, and also the Taubman Center. They use to have book sales there once in awhile and I would love to go. After awhile Shane would be my conscience and tell me that I didn't need any more books, because I had my own small library at home of unread books. Every time I buy a book I think of him. A couple of weeks ago I spent over three hours at Barnes and Noble (I love that place) while Kayla's car was getting fixed. I ended up leaving with 3 more books, that are on a shelf with a bunch of others. I'll get to them someday. Last week I had to pick Kayla up at the airport at 10:30 p.m. I left a few hours before I had to and ventured down Main Street in Ann Arbor. I haven't been there in awhile. Such good memories (shopping for U of M stuff with Shane), funny memories (seeing the expression on his face when a homeless man gave me a hug and told me he loved me), and a couple of sad ones (remembering our last time there together). I still LOVE that city!!
I hope everyone had a good summer. I am really looking forward to the fall weather, yes, I am even looking forward to winter. Please keep in your thoughts and prayers all of the families that have children that are fighting cancer (one poor little girl was diagnosed with Neuroblastoma a few years ago, went into remission, but now has chemo induced leukemia (from the chemo to treat her Neuroblastoma)). How cruel is that? Also, please keep in your thoughts and prayers all of the families that have lost someone special. The changing of the seasons always seems to trigger all sorts of memories.
Take care everyone!!
Wednesday, May 13, 2010 10:07 PM (I knew this was going to be a long one)
Sunday started a very special week……… it is "National Nurses Week", or I heard someone last week on the radio call it, "National Health Care Week" (to include everyone in a medical setting).
Shane was first seen in a hospital in Ohio (while we were on vacation). The doctor we saw there I will never forget. Not just because he was the one that told me (showed me), about the tumor that was on Shane's x-ray, but also because of his compassion of how he did it, and the advice he gave after. My first thought was to drive home right away. He talked with me for awhile (Randy had dropped Shane and I off and took Kayla and Adam to get something to eat), calmed me down before I went back to see Shane, and then said to take the kids, go to the amusement park, and let them enjoy their day, which we did. Oh how he knew that our lives would never be the same after that moment. We stayed in contact with him for years after. The last time I talked to him was the month after Shane died. He said he still clearly remembered the day that he met us.
By the following evening we had driven home, gone to our pediatrician, chosen and were already at the University of Michigan/Motts Children's hospital. A decision I am sooooooo grateful for (our other choice was Children's Hospital in Detroit).The nurses that Shane had assigned to him on that first visit ended up staying with us, some for the entire 10 1/2 years. Others stayed until they left for other jobs on different floors, other hospitals, or they moved away. He went to their weddings, going away parties, out to lunch ……. his nurses made his trips to Ann Arbor, and inpatient stays, something that he truly looked forward to at times. The slide show above shows only a few of the nurses that Shane had over the years. I wish I would have taken more pictures of him with them. They were such a large part of his life. Not only his life, but of mine also. I remember asking Nurse Joy that first week how to get to the room that had books about Neuroblastoma. She gave me the best advice then saying that sometimes too much information is not always a good thing. How right she was. Had I seen back then the percentages, statistics and prognosis for Shane's cancer, my outlook on everything would have been so different. Shane beat all those odds that I would have read about back then, for a long time. At diagnosis he was given a 30 percent chance of survival for 5 years. For the longest time I didn't realize the 5 year part. I thought it was complete survival. Maybe I had heard it, but chose to not acknowledge it. I trusted his doctors from day one, and I chose to leave everything in their hands. Dr. Yanik was our rock. He stayed with us from day one. Even when we should have been dropped from his case load because of changes the hospital was making, he somehow worked his magic so he could stay with Shane. I can't imagine going through all the treatment discussions, the progressive test scans, the bad news, oh, and the good news also (I can still remember the message he left on the answering machine when Shane got his 1st 'no cancer' showing on his scans), with anyone but Dr. Yanik. More than one school report was written about him. Shane trusted him, and he always felt safe and taken care of. Plus, he wouldn't share his snacks when he was inpatient with just anyone.
Shane formed a few very special bonds over the years. One was with Nurse Kerri. She could make him laugh, and get him to do things that I couldn't get him to do while he was inpatient there. One being….. take a bath or shower. For some reason whenever he was inpatient, which was quite a bit the first few years (1 wk in for chemo, home for a few days, then up to 1 wk for a fever, then home for a couple of wks, then repeat), he didn't seem to think that he needed to do that on a daily basis. One time while he was in the playroom, Kerri went into his room and kidnapped KoKo (his monkey). When he came back he found a ransom note stating that the monkey would be returned after he had taken a bath. It worked. He laughed about that for years. That monkey was expected to go with him on every visit. That was always one of the first questions he was asked when checking in…… "How have you been? What medicines are you taking? Where is KoKo?" He LOVED it!!! Years later, Kerri would come and get the monkey (we would still take him – he was such a good pillow), and take him on rounds with her, or to the nurse's station to hang out.
Spending time with the nurses.
Another special bond that Shane had was with Nurse Beth. Shane had the gift for gab. That kid could talk, and talk, and talk. He and Beth could talk forever. Once he got on a topic, it was hard for her to get away. I use to say, 'okay Shane, Beth has to go now…… 10 minutes later, okay Shane, Beth has to go now…… Shane was discharged from the hospital the day before Beth's wedding from an infection. He was so glad to be able to go (I.V. bag hanging in the van as we drove). When he was in 5th grade he asked Beth to be his 'Special Person' on Special Persons Day. She got the time off and made the trip north to be here. They planned the night before to both wear their Motts, 7 West shirts – too cute!!! When Shane was in 8th grade Beth had already left the hospital to start a family. He hadn't seen her in quite awhile, but when we went to a football game at the Big House, who did he run into amongst all those thousands of people…… Beth. He was so excited to see her. Years had gone by after that when they didn't see each other, but sent cards at Christmas. In the spring of 04 when the tumors were discovered in his head and things were not looking good at all, Beth came to see him in the hospital. For me it was so nice, and at the same time so hard to see. Seeing them together talking and laughing made me wish we could just go back to the beginning again and do it all over. I would have gladly relived all those times, even the bad. For Shane, he had his old friend back and it was like the years of not seeing her had never happened.
Even though his night time nurses on 7 West (Janell, Diane, Connie….), worked the majority of the time that he was sleeping, they always managed to find time to touch base with him when they first went on shift. I think sometimes he loved those 3:00 a.m. drives down to become inpatient with a fever. It was then that he was given the chance to talk and catch up with whomever was working 3rd shift. When he was inpatient for 3 weeks for his first transplant, everyone said they felt bad for me because I wouldn't get any sleep. Not the case. Those 3rd shift nurses would come in, do what they needed to do, and leave sometimes without me even knowing it.
The last nurse on 7 West that Shane loved to see was Kim. They could/would talk about anything and everything. She could always get him going on one of his "Kayla" stories. Whenever he would get admitted for something bad, or if he was just feeling horrible, he always wanted me to find out first thing in the morning if he was having Kim, or Kerri for his nurse. The couple times that Shane was admitted and we were told that he might not make it out, those two nurses were my strength and sanity. There were a lot of new nurses over the years, but Kim, Kerri and Janell were our 'constants'. I couldn't have gone through all of it without them. Kim was the nurse that called on day that Shane died. She wanted to see how he was doing, and to let him know that she was expecting (he loved to tease the nurses about something being in the water on the 7th floor because it seemed like there was always more than one nurse pregnant at the same time). Kim's call came at the moment that Shane took his last breath. For a reason that I can't put into words, that will always have special meaning to me.
The nurses in clinic were the ones that we spent the most time with during his last four years. Things had changed at the hospital by his relapse and they tried doing more treatments on an 'outpatient' basis. Nurses Marcia, Suzie, Martha, and Mary Jo are so good at what they do. We would make the drive down every day during a chemo week. For Shane, trusting his nurses and feeling safe was an important thing, but sense of humor was vital. He got that, plus so much more with his clinic nurses. One day there was a room full of patients getting chemo, blood, fluids….. something. When an I.V. would beep, Marcia would come out and say 'who's beeping, raise your hand.' Shane got an idea and passed it around the room. He got his I.V. to beep (pinching the line I think), and when Marcia came into the room, everyone raised their hand. The look on her face was priceless, and we all had such a good laugh about it. One nurse in clinic, Mary Jo, was not only Shane's nurse, but also a lover of the Red Green show. He LOVED sharing his love for that show with her. In October of 04 we made a trip to Toronto to see a taping of the show. Shane brought Mary Jo back a Possum Lodge patch. He couldn't wait to give it to her, and she wore it proudly on her name tag. He would have so much fun giving her a hard time about things. She would take it, then turn around and dish it right back at him. For me, the minute we walked into those clinic doors, all of my parental rights were turned over to Mary Jo. He always referred to her as his 'other mom'.
In the slide show above I included some of the Child Life people (this is the career that Kayla has chosen to do). They play such an important part in any child's life that needs medical care. The nurses have things that they 'have' to do when any child is in the hospital, and they are not always good things. Some nurses would love to be able to sit more with their patients and play games, or go with them when they have a test done or treatment done. But time does not allow that to happen much, if ever at all. The people in Child Life do those things, plus so much more. Teresa's first day at the hospital was also Shane's first day of chemo (Halloween, 1994). Teresa worked on 7 West. On days that he was inpatient, he truly didn't spend much time in his room. With chemo bottles and bags hanging from his I.V. pole, he went to the playroom and stayed as long as they were open, so he could spend time with Teresa. On Teresa's last day at the hospital, Shane and I decided that because he was there for her first day on the job, he had to be there for her last. Teresa's husband, Brian, also worked for Child Life (they met on the job, and Shane predicted they would get together). When Shane was in for his 1st transplant (stuck in his room for 21 days), Brian came in and put tape on the floor to make a 4 square board for he and Shane to play with. They would be playing, I would be holding and moving the I.V. pole (ha, ha).
In clinic, Sheila, Lisa, and Devyn were the Child Life people. They were always there with things to do, an ear for Shane to talk to (and talk, and talk), and support. Sheila was there from the first day we started. She was calm, compassionate, and oh, so funny. Shane would tease her relentlessly about her lack of computer skills. She would retaliate by singing a song to him that she made up…… too funny. Lisa went with our group to the ranch in Colorado. Shane got to meet her husband then, and became a fan of his. When Jason finished his doctorate, Shane told Lisa that she should have to call him, "Doctor Jason." They would talk a lot about music, school…… Back then Shane liked the show Carmen Sandiego. There was a band on the show that played a lot of 50's style music. Before Lisa and Jason moved to Minnesota, Lisa gave Shane a series of c.d.'s with the same style of music. He listened to them quite a bit on our drives back and forth to Ann Arbor. I still pull them out and listen to them today.
The last person that I'm going to write about (I didn't write these in any particular order), is Devyn. Devyn was the last person that Shane met and became close with (in 2000). He was all over the place. On 7 West…. in clinic….. in the hallways, elevators….. All the years Shane had been going there for treatment, I never let him go to any of the camps that they offered. I guess I wasn't ready for him being out of my site and in someone else's care for more than a day/night at a time. Shane had other plans. In the spring of 2000 he declared that he wanted to go to Camp-Mak-A-Dream in Montana (the same camp that Kayla volunteered at last year, and will again this summer). MONTANA!!!! What was he thinking? Not only did he want to go away for a week, but to a state almost on the other side of the country. After I agreed to it, I then found out that his escort would be a new person on staff, Devyn. Devyn was great the first time we met, which was about a week before I sent my son across the country with him. He gave me his cell number, convinced me that he was a responsible person (Shane is laughing his head off about that one – just kidding), and calmed me down about the whole thing. Those two hit it off from the get go, and Shane had a GREAT time at camp. One time Devyn (I think he started it) walked by Shane's room. To get his attention he threw a condiment package at him. Next time it was Shane who threw a condiment package at Devyn to get his attention. It went on and on, every visit to the hospital. One day Shane and I were getting in the elevator on the 7th floor. The doors were just about shut when all of a sudden a handful of condiments came flying through. The one picture up above Shane was in a wheel chair because of pain in his hips. It was not a good day. Devyn came walking up with his condiments in hand (by Shane's head), and Shane was smiling. At times when Shane was in pain, all Devyn had to do was walk into the room and Shane would laugh, or at least smile about something he would do or say. It was a sad day when Devyn left the hospital. He is back now, and Kayla had the opportunity to work with him for a little while (Shane would have LOVED that one).
I could go on and on about the people that we met during Shane's journey. There were doctors and nurses, and other staff, in San Francisco, New York, and many more in Ann Arbor. I will never be able to say enough good things about them, the work that they do, or the difference they make in the families lives that they come in contact with. I know there is a special place in heaven for all of them, and many angels up there waiting for the day that they will get to see them again.
Take care everyone. I'm not sure if I'll write again until after the summer, unless something news-worthy comes up. Who knows, maybe I'll get grass to grow out at the cemetery (ha, ha), that would definitely be news-worthy.
Monday, April 26, 2010 5:46 AM CDT
For three weeks, from Adam's birthday until Shane's birthday, I was always able to say that I had a 1 year old, a 2 year old, and a 3 year old…….. then a 2 year old, a 3 year old and 4 year old ……….. and so on. Every year on Shane's birthday I would give him a hard time because I couldn't say it any longer. He would just laugh. It was fun to tease him about things because he was so quick with a comeback. Kayla and I would be arguing, or Kayla and Adam (notice it's always "Kayla" and someone – ha, ha), and Shane would yell, "Can't we all just get along." After awhile he would only get out the words "Can't we", and Kayla and I would yell at the same time, "Shut up Shane!" He would just respond with "Geez." His height (or lack of (sorry Shane)), was always a fun topic. We added onto our house in 2002. When it was done we had a good size coat closet in the family room. Shane was 16 at the time, but the bar was too high for him to reach. He stood there underneath it one time goofing around trying to jump up to hang his coat. We laughed sooo hard. I had to take him to a walk in clinic on the weekend one time for a cold. When I went to fill his prescription next door they had all sorts of gadgets for people with disabilities. I saw this mid size pole thing with a squeeze handle on one end, and these pincher things on the other end. It was for reaching things. I couldn't resist. I bought it and gave it to Shane to help him with his shortness (ha, ha). It's still up in his closet.
Shane's last few years here he started a new tradition on his birthday. He wanted his candles on a pizza instead of cake. We have a local pizza place here (B&C) that makes the best pizzas. Those were the pizzas that he wanted. Every year we still get a pizza on Shane's birthday. If Kayla and Adam are not in town, they get whatever kind is close to them. This weekend Adam could only come home on Saturday so I got his pizza and sent it back with him. Kayla was home yesterday and went back last night, so I got her one and sent it back with her. Today, I plan on just getting a slice on my way out to the cemetery. Some traditions need to be kept......Here are a few of my favorite Shane pictures (just a few).
Top left clockwise: playing the sax in clinic...Riding his horse at the ranch in CO...at Times Square...Moving day to CMU (not with the monkey)...1st Communion/birthday...With Devyn on Halloween in clinic...Sitting in his transplant chair (rocker he got to take to the hospital for his transplant to encourage him to get out of bed) with the sundial he wanted for his birthday. The words say, "Time Takes All But Memories." How special and true is that!!!
Well, last time I wrote (which was only 3 weeks ago), Kayla was to have graduated from Eastern yesterday. Now this is Kayla that we are talking about, so nothing is ever carved in stone when it comes to her. About a week and a half ago she called me to say that she had changed her mind about a few things. The first being her internship that she was suppose to start in May and work at until the end of August. She has decided to work at her job (with her 2nd family), through the summer instead, and save up as much money as she can. Then, she will do her internship during the fall semester, take her state test in October, and graduate in December. I think I have that right. I would love it if she could do her Child Life internship at St. Jude's. I think I might need a certain angel helper for that one. Mitch graduated fomr basic training on Friday (23rd). Kayla was able to fly down for it (an early graduation gift from the family that she works for) and stay with Mitch's family. They all came back on Saturday. He leaves again in about 10 days to go to New York. I am really glad that they are still friends.
Baseball season for Adam is almost over, just a few more games. He had his finals last week so the semester is finished. Because of ball he has to stay there, plus his spring term starts next week. We'll have to wait and see how his grades are. He had some tough classes this time. His baseball team is struggling this year, and he is struggling with baseball this year. There are a lot of juniors on the team that have been playing together for 3 years now. This year should have been a great year for them, but it seems to be the coach on one side, and the players on the other. They are just not on the same page, too sad. So far, Adam turning 21 is not as bad as I thought it might be (it's not summer yet though). He did do a funny thing the other night while he was home (not alcohol related). He got up to use the bathroom in the middle of the night. When he went back into his room, I think he forgot where he was (home, not his dorm). As he demonstrated when he told this story, he thought his bed was right in front of him so he kind of collapsed onto it……….. but, uh oh, his bed wasn't there. He ended up falling into his DVD tower, hitting the wall, and landing on the floor close to his closet (way past the foot of his bed). The dog jumped up and started barking, I didn't really hear it. It's a good thing he didn't need me (ha, ha).
33 days left of school (yes, I have them counted). There are so many kids that come to school with so much baggage. They act out, they disrupt, they have anger issues, they are judged …………and they mostly all have good reasons for the way that they are, really. I can't help but not feel sorry for them (unless I am doing battle with them over something – ha, ha). Some of these kids are going to be so lost during the summer. I think school is the only stable thing that they have in their lives. This summer, for me, I have big plans. Areas of my house have been neglected for too many years. Our walk in closet upstairs (we refer to it as our 'the other realm', Shane named it from the old TGIF Sabrina days), has become a big dump fest. I don't even know what's in there anymore. Adam and Shane's closet is still filled with all of Shane's things. His clothes are still hanging on the lower pole (he HAD to have the low one so he could reach them ha, ha). The shelves are full of his U of M things, sports things, and all of his other collections. It is just something that I have put off for too long now. I think it's time. And the pictures...... I have bins of pictures to go through and somehow organize (Shane always said that my name and organize should never be used in the same sentence). My summer will be busy.
My memories of Shane are still very real, and every day I still think of him at one time or another. I hope that never ends.
Happy Birthday Shane ~ we still love you, and we still miss you like crazy!!!
Have some pizza today!!!!
Oh...... I have a new game plan to get grass growing out at the cemetery. I'll let you know later if it works. Keep your fingers crossed (I'm sure Shane is LOVING this).
Monday, April 5, 2010 6:30 AM CDT Today is my baby boy's 21st birthday. HAPPY BIRTHDAY, ADAM!!!! All I can say is…….. WOW!!! So many smiles he has given us over the years. So many times he has kept me going when I really didn't quite feel like it. When Shane died there was that "lst" outing that you must do out in public. I'll always remember mine. Adam was performing with the pom pons at halftime of a varsity basketball game about 2 weeks after Shane left us. I wasn't too comfortable going out yet and seeing people. I am so glad that he did it and gave me the reason I needed to get out of the house. I decided then after he performed that he missed his calling. He LOVES his sports, but darn he was good at dancing and doing the kick line with the girls (ha, ha)!!! Shane would have LOVED it and I'm sure he would have razzed him about his hidden talent. He ended up doing the pom pon thing every year after that with a friend he had had since grade school. It was a day that I always looked forward to.
Adam and Shane had a good relationship. They challenged each other in video games constantly. They continuously compared their knowledge regarding sports stats. Sometimes they would even get in little heated arguments about those 2 Michigan college teams (Michigan State – U of M), they each were fans of. They shared a room, and at times I feel that Adam saw more than any boy his age should have to see. He saw Shane go through some pretty rough times. As Adam got older, and taller, Shane referred to him as his "Little-Big-Brother". Adam, in return, referred to Shane as his "Big-Little-Brother". What a pair they were growing up.
Baseball season has started. The first game I went to was soooooo cold and windy. It took me a day to warm up from that one. Then two days last week it was so warm and sunny I got a nice start to my tan. Adam's been struggling a little at bat, but he's starting to make a come back (I hope). School is winding down for him. Just a few more weeks and final exams will be here. He has a new special someone in his life now. Rachel will keep him going in the right direction.
Top picture: Adam and Kayla last week at the ball park
Bottom picture: Adam and Rachel ~ Easter Sunday
Kayla………we are SOOOOOOOOOO close to her graduating. This is getting so exciting. I think everything at Eastern is finally taken care of. I really don't recommend that school to anyone. Every time she contacted the counseling department she was told something different. She either needed more classes, she had enough classes, or what they said she needed each time would change. I finally took a day off and went there with her. The man at the head of counseling wasn't going to let me in, but Kayla said it was okay, so he had to. He ended up telling her that everything she had taken was good and she was on schedule to graduate in April. I asked him to put it in writing with his signature, and he did. We will see on graduation day, April 25th (the day before Shane's birthday), if her name is in the program. I may have to borrow a bullhorn from school and take it with me in case I have to announce her name myself. Wouldn't that cause her to get a little red in the face (ha, ha). She's doing pretty good on her own down there. Learning independence is a good thing, AND she is conquering her math class all by herself. Shane would be so proud (and amazed). Mitch graduates from boot camp a couple of days before she graduates. He'll be back here in time to see it all happen. I'm glad that they are still good friends.
The first signs of spring weather sure did show up at a good time for me. I love winter, but February seemed to drag on for quite awhile. In our Neuroblastoma world, we lost so many in a months period. From 21 years old, to a 1 year old. I truly lost count of how many there were, but it was a very bad time. I think that just got a little too much for me at times. Shane was definitely on my mind a lot. The warm weather just gives me the feeling of a 'new beginning'. That, and I love hearing the Blue Jays when I'm walking the dog. They make me think of Shane a lot and camping when the kids were younger. Funny how different things, or songs, take you right back to a certain time in your life. I love those happy moments. Spring break was last week for me. I didn't get as much done as I wanted to, but it was so nice to have that time off. Summer vacation is just around the corner.
Well this is all for now. It's a slow news time around here. I have a favor to ask…… if any of you live in the Bay City area and happen to see Adam out on Midland Street late some evening (or anywhere else), and if you think that maybe he shouldn't drive, call him a cab, I'll pay……. Thank You!!! No, just kidding, really, I trust him …… (Shane's in heaven laughing at me now). I put a new slide show up above. Some (just a few), of Adam's finest moments captured on camera – ha, ha!!
Sunday, March 21, 2010 Just a picture change. Today was a day that Shane ALWAYS looked forward to ~ The St. Patrick's Day Parade!!! Adam's birthday is in 15 days (I'm sure he's got it counted right down to the minute - ha, ha). I'll be back then.
Friday, February 5, 2010
No updates, just some picture changes. Please say some prayers for a young man that I have been following since a little after Shane died. He reminds me sooooo much of Shane, and has been such a fighter. ERIK is really struggling right now.
Sunday, January 3, 2010 2:47 PM CST
Another year gone. Another year without Shane with us. Just like how living with cancer in our lives for over ten years became a way of life, living without Shane with us is now our new 'way of life'. Nothing we say or do will ever change the fact that he is not here with us. For Shane, we have to just keep living our lives the best we can. Doing as many good things in our daily lives that we can. Making as many people as we can 'smile', and always looking at our cup as 'half full'. Oh, and always try new things first (tasks, adventures, movies, books….,) then decide if we like it or not (he was good at that, except when it came to food (especially vegetables… ha, ha)). There, my own self pep talk for the year. I recently finished the book "The Shack". I was told it was a good book and that maybe I would get some answers from it. It was an easy read in some parts, then a hard read in others (I don't do too good with profound things). I came away with a few new things to hold onto and think about, but definitely not the answer to some of the questions that I have. I think those will have to wait until the day that I die. I remember telling Shane on the day that he left us that when I die, HIS better be the first face that I see and that he better not make me wait. And then after that first big hug he better get the hell out of the way because I had questions that I was going to get the answers to (I'm sure in his deep sleep he was smiling and thinking "she's crazy".) I hope this year gets me back to feeling the way I use to in church. I miss that. I go, but it's just like going through the motions anymore. We'll see.
2009 was a good year for Kayla, Adam, and our extended family. Kayla is on the final stretch for school……. YAY!!!!! She has one LAST math class that she has to take this semester. I'm sure she will think of Shane more than once during that time, and wish that there was a phone line to heaven. I have a feeling that Adam is going to be getting more than a few phone calls from her this semester. We are so lucky that she found the job down there that she did. They really take care of her while she takes care of their kids. I am really grateful for her having some adults in her life while she is away from home. This week Mitch leaves for the Army (we wish him soooo much luck), so she will be on her own for the first time in awhile. Poor Mitch was her 'go with her for support' for the last two years. She's now going to have to do things by herself (go to the doctor, to donate blood, the store ……….). This may get interesting.
Adam will finish his junior year (college)in the spring. My youngest did very well during his high school years staying out of trouble. He turns 21 in April and I have a feeling he is just WAY too excited about this. I sense that I may have to stock up on the hair dye for myself. He is always telling me that he is 'responsible' and not stupid….. I'm going to keep reminding him of that. Baseball will be starting in a month, brrrrrrrr. Between that and a couple of his classes that are a little tough, hopefully he will stay 100 percent (at least 85 percent) focused on what he needs to. He really is a good kid (won't be able to say that much longer, the kid part (I hope)).
2009 brought a family gathering that Shane would have LOVED to have been here for, and was probably thinking "It's about time!!", when it happened. Shane's cousin, Mandy, and longtime (12 years) boyfriend, Nick, FINALLY got married in September. They are both such great people. They've kept on track with their goals, put themselves through college, supported themselves throughout the entire time, both gotten degrees (Mandy, in Nursing - Nick in Micro Biology), and this would be Shane's favorite, they have just moved down to the Ann Arbor area and gotten jobs at the U of M hospital. How great is that!!!!
We sure did miss Shane there that day. In Mandy's bouquet she had two white roses. One was for Shane, and one was for Nick's dad. I know that they were truly with all of us that day.
Picking a Christmas tree is always fun for us, and quick. Our goal is always to get a Charlie Brown tree, and then turn it into something beautiful when we are done. This year we could have had the "perfect" Charlie Brown tree. It truly had no top to it. It looked like it had been cut straight a crossed at the top, and then rounded off. Kayla and I felt bad for it. Randy said 'no' to that one, so we got the one next to it. It had holes and funny branches and a different top, but once decorated it was perfect. We didn't go out hunting in the woods for one this year because Kayla didn't bring the right clothes, or boots.
A few more pictures to end this with. The top one is from Christmas Day at my mother-in-laws. We started something last year that Shane would have LOVED to be a part of. We call it "Ugly Christmas Sweater Day". It's fun to shop for them. I hope no one has any of these in their closets and are offended by this (ha, ha). Oh.... Mandy got her hair all cut off and donated to 'Locks for Love' not too long after her wedding. What a girl!! The bottom few are our last Christmas pictures of the year before the tree comes down. Kayla and I like the one of Adam and Tober in their red and black shirts. Shane and KoKo are still our angels at the top of the tree.
Shane LOVED the holidays and he LOVED the changing of the decades. I didn't even realize it until January 1st that we've begun a new one (he would be shaking his head at me about that one). The two pictures below I love. They were from New Years Eve 1999. He was in the hospital and feeling crappy from his transplant. He slept the majority of the day, but he made me promise to wake him up at 11:59 p.m. so he could watch the ball drop and see the new millenium begin. Nurse Diane came in right after midnight and Shane stayed awake long enough to have some fun with her.
I hope the beginning of everyone's new year is going good. We really don't have to wait for the beginning of a new year to make all of the changes in our lives that we want to. Every day is a new beginning. Make the most of it, and keep making and taking those Kodak memories.
Love you Shane (and KoKo)!!
Friday, December 25, 2009 Merry Christmas Everyone ! ! !
Sunday, November 29, 2009 9:24 PM CST
Five years…… it really doesn't seem like it. I am SO grateful for all of my memories, and for the feeling that Shane is still very much with me. Maybe it's because we spent sooooooo much time together while he was fighting his cancer. So many hours in the car driving, or endless hours in the hospital for treatments, procedures, tests, or inpatient stays. My mind is just full of memories of the time we spent together. All of his little sayings ("Can't we all just get along", came up the other day ha, ha), the responses he would give when certain things would happen, his sense of humor, his being a walking book of knowledge and sports stats……. the list goes on and on. I hope this feeling stays with me forever.
A couple of weeks ago I went to the U of M / Purdue game. Shane would love this analogy…… every year we went to at least one football game and we never went to a game where they lost. Last year when I went to the Wisconsin game, it was a close win (upset). This year I knew it could go either way. U of M started out strong. So strong that they were up by two touchdowns by half time. I thought that was good enough to show what the outcome was going to be, so I left after the band played (I was going to meet Kayla and do some shopping), anyhow……. they were winning when I left (which quickly changed)……. so technically I haven't been AT a game when they lost………. right ???????
I sat here tonight and watched "Extreme Home Makeover". Shane LOVED that show!! Tonight it was about a boy who was diagnosed with leukemia (of course it was). I remember that five years ago Shane was able to be awake enough to see the Red Green show that we went to the taping of, and to see one more show with Ty (Extreme Makeover). Ty would always do something during the show that would make Shane smile, and two days before he died, that was still the case during that last show that he was able to watch. I'll always have that memory.
Kayla and Adam are doing good. Kayla is finishing her practicum work in Child Life at U of M. She was able to work on 7 West once, and in the infusion department once. All of Shane's nurses are still in infusion and she was able to talk with them some. I bet Shane would have had a few things to say about that (ha, ha). Adam has a couple of hard classes this semester, but he's working hard and spending more hours in the library than he probably did all through high school. Neither one is planning on being back home for three weeks. I guess finding our 'ugly' Christmas tree will have to wait until then. They are my sanity, and they keep me young at heart (ha, ha).
I still dread the month of November. I still dislike hearing Christmas music on the radio or at the stores when I shop. Tonight I remember five years ago sitting on a pillow on the floor next to Shane's bed in the living room and holding his hand all night. Tomorrow will be full of memories also. I am glad that it falls on a school day. The kids will keep me distracted for most of the day. I've learned that the anticipation of the day is worse than the actual day arriving. Each year seems to get easier. I hope that stays true. I am anxiously waiting for that first snowfall so I can hear him singing Jingle Bells in my head (ha, ha).
We love you Shane. You are always right here with us!!
Thursday, November 26, 2009 Still finding thigs to be thankful for. I'm especially thankful for all of my memories. HAPPY THANKSGIVING ! ! !
Saturday, October 3, 2009
Top: 1999 ~ Bottom: 2004
Shane is always with us on this day. The balloons are out at the cemetary. The flags are flying at home. The next thing is........ who is going to win????
Sunday, September 13, 2009
HAPPY BIRTHDAY KAYLA ! ! ! (don't tell her that it wasn't on here actually on the 28th of August - shhhhhhhh) 22 years old and doing soooooo well ! Who would have thought 8-10 years ago (during those darn "dark" years of hers), that she would be doing so well today. She didn't come home for her birthday because she was going out with friends down there. I drove down the day after and she and I went birthday shopping at the IKEA store (for over 3 hours). That place has a little bit of everything. At the end of July she escorted 13 kids out to Camp-Mak-A-Dream in Montana for a week. Shane had gone out there in 2001 with Devyn and LOVED it! She had a GREAT time and wants to do it again next summer. I am hoping she can talk Adam into going also. She started working at the hospital (U of M/Motts) with Child Life a couple of weeks ago. It's a practicum for school this semester. She LOVES it ! At the beginning of the summer she started working with Devyn (Shane's Child Life buddy), at U of M in the Rec Therapy Dept. That lasted a few weeks and then she asked for a leave because there was another girl with Devyn also (he's in great demand I think). Her thinking was that she would benefit more if she waited until that girl's time was finished and then she would go back. I guess I agree. I'm not sure when that will start up again.
Adam worked at the same place I did this summer. That was interesting. I could still boss him around a little (like at home – ha, ha). He kept busy there and the best thing for him was that he didn't have to do shift work. The job shadowing that he did for 3 weeks went by quick and he liked it, or at least found it interesting. So far he is still going to school for Physical Therapy. He spent a lot of time just being with friends this summer. What a life. This summer saw a couple of changes around here. There were no boyfriends, or girlfriends. After over three years of Kayla and Mitch, and Adam and Samantha, their relationships have now ended. They are still all able to be friends, which I am so happy about.
We passed the 15th anniversary of Shane being diagnosed with cancer. I truly believe that being able to celebrate any diagnosis anniversary is a good thing. It means you still have a fighting chance. Speaking of fighting chances, Kayla found out about the Curesearch Walk (Childhood cancer research funding) down in Rochester and had us form a team. It was a small team with only Kayla, Adam, Randy and I. We named ourselves "Team Almighty Shortman". A nickname that Shane gave himself. I had shirts made that were of course navy blue with a big ole yellow block M on the front (Randy and Adam were not happy with the choice of colors - ha, ha), and our team name on the back. There were quite a few people there. When we were in line to sign up, there was a family of 4 in front of us (mom, dad, and 2 little kids). They were asked if they had pre-registered and the man said that his daughter had died 3 weeks ago and they had just decided to come and walk in the event. The lady talking to them just reached out and gave them a hug and showed them where to go. Too sad. Each person wore bandannas that were different colors to represent either an angel, someone still in treatment or someone in remission. Kayla was our team captain since she did the organizing and all of the paperwork. Before the actual walk began they asked for someone from each team to come forward and release a gold balloon if they were there for someone they had lost to childhood cancer. Kayla looked like a deer in headlights (she does NOT like getting in front of people). We kept telling her that it was the captain's job to do, she kept making excuses, so Adam went up instead. We then told Kayla that she was fired from the captain's job (ha, ha).
I took the last 2 weeks of summer off from my summer job so I could get a few things done around here that I really have wanted to get done for awhile now. I didn't get to all of those things, but I put a dent in the list. Most of those things pertained to Shane, so he was on my mind quite a bit. The summer after he graduated from high school he started to put together songs that the band had played over the years. He was such a technical kid. He was copying the songs off of the movies that I had videotaped, saving them to his laptop, and then burning them onto a cd. He gave them to his band teacher as a gift when she announced that she was retiring, but asked for them back so he could make covers for them. Well, he never got them back to her. That was one of my goals this summer was to find them, listen to them to make sure they were okay, and then get them to Mrs. Stoddard. Listening to them brought back so many memories. The tears were flowing more than once, but more than once they made me smile a lot. Music was such a big part of Shane's life, and hearing different music makes me think of him a lot. Coming home from Kayla's, driving up the freeway that I traveled so much with Shane, I heard a new, happy little song from Uncle Kracker (Shane loved his music) called "Smile". I really love this song and it makes me think of him a lot.
……… Even when you're gone
Somehow you come along
Just like a flower poking through the sidewalk crack and just like that
You steal away the rain and just like that
You make me smile like the sun
Fall out of bed, sing like bird
Dizzy in my head, spin like a record
Crazy on a Sunday night
You make me dance like a fool
Forget how to breathe
Shine like gold, buzz like a bee
Just the thought of you can drive me wild
Ohh, you make me smile………..
Another thing having to do with music and Shane is the piano that I bought him for his last birthday. I don't buy my kids big presents for their birthdays, but by Shane's 18th birthday we kind of knew where everthing was heading. I thought the piano (kind of a keyboard style), would give him something to do over the summer if he couldn't get up and around much. We spent the majority of that summer driving to Ann Arbor for chemo and transfusions, so he didn't really get much of a chance to use it. It has been sitting in the corner of the living room for forever. I didn't want to sell it. I kind of hoped that I could find a place at the hospital that might be able to use it without having it be in a play area for kids to pound on. After calling a couple of different departments and getting nowhere, Kayla found someone in Child Life that does music therapy and he said he could use it – YAAAAYYYYY!!! I'm really happy about that, and I know Shane would be also.
Before I end this I have to say HAPPY BELATED BIRTHDAY ~ KOKO (boy, am I in trouble in heaven – ha, ha) School starting so late this year really threw me off........ Also, I have to tell a funny story that happened at the cemetery. For the last couple of years when the U of M games start I go to my favorite local balloon store (Party Pals) and buy some U of M balloons to take out to the cemetery. I do it every Saturday until they lose (last year was a cheap season – ha, ha), but I still take them out for the MSU and OSU games (those are a MUST regardless). Anyhow, I took the balloons out Saturday and some new pictures to set out because the old ones were getting faded. The frame for one broke so I leaned it against the front of the bench and slid one of the plaques in front of it to hold it up. Before I left I stepped back to make sure everything looked okay, and what I saw made me laugh. The plaque I moved had now covered up the "Cl" in "Class of 2004", so what was left to see said "#ss of 2004". For a moment I thought about leaving it that way, then I heard this Shane voice in my head saying "NOT FUNNY!!!!!" I changed it (ha,ha).
Take care everyone, and thank you so much for still coming here and checking on us!
HEY ~ HOW ABOUT THAT GAME ~ ~ GO BLUE ! ! !
Monday, May 25, 2009 7:23 PM CDT Memorial Day is definitely a time for remembering. The pictures above were taken around the beginning of May in 2002. Somewhere between when those pictures were taken and Memorial Day that year, all hell broke loose with Shane. He had been taking Fenretinide back then for over a year and a half. While on that trial his disease remained "stable". Back then, "stable" was definitely a GOOD thing. All of a sudden he started having back pain and he had to be admitted in Ann Arbor to get it under control. Some tests were taken and they revealed that his cancer was progressing again, especially in his back/spine area. It was the first time since he had been diagnosed that he had pain again. It was definitely a wake up call, "Welcome back to the real world of cancer." We had plans that year to go camping at Higgins Lake for Memorial Day. We were going to meet Shane's God parents and their kids there. Adam and Kayla were both taking a friend along, plus Adam had another friend from school that was at his cabin up there at the time. We came very close to cancelling the whole thing when Shane went in the hospital. That was the first time ever that they gave us a timeline of how long Shane might be with us (maybe through part of that summer). Shane LOVED to camp, sit by the camp fire, make pizzas over the fire, eat smores ……… he said he would be okay and he was really looking forward to it, so we went when he was released. His pain was manageable. The mornings were always the hardest. The lake was still very cold, and of course it rained while we were there (that seems to have always been a family tradition with us). Adam and his friends ganged up on Kayla while we were there and dragged her out into the lake. She gave them a good fight and it took all of them, plus some extras, to get her out into the water. Who do you think was right there helping them……. Shane. I know that I wanted to tell him to not get involved so he wouldn't get hurt, or so he wouldn't get sick from being out in the cold water, but I just couldn't do it. I figured his mind was being distracted at that time from everything he had recently gone through, and he looked like he was having such a good time picking on his sister. Here's a picture of him after I think he realized how cold the water actually was (ha, ha). Me, being the mom that I am, didn't want to interfere with their fun so I did the next best thing. I took pictures of the whole thing. I can't find them right now, but I'll get them on as soon as I find them. One more memory from that trip. This one is soooooooooo Shane....... While we were there we all took a ride to where Adam's, friend's cabin was. We promised Shane that we wouldn't be gone too long because the Red Wings were still in the playoffs and Shane HAD to be back to the trailer in time to watch the game. When we left to go back to the campground Randy took a different way (he loves the scenic route to everything, ha, ha). Shane brought it to his attention that we might be late getting back now. Randy told him that we would be back in time and (kiddingly) to not have a baby over it. Shane then replied…… "Well we all know that that's never gonna happen."………… I had wondered back then if Shane realized that all of the chemo that he was getting had made him steril. I should have known that he knew, and that he would make a joke about it. I couldn't help but laugh when he said that. The majority of my memories are still good ones. And did Shane fool the doctors back then, yes he did. That was the first time that he was put on hospice (he was put on it 2 more times after that), and he lived over 2 1/2 years past that. Way to go Shane!!
Sunday, April 26, 2009 7:05 AM CDT Today would be Shane’s 23rd birthday. I wonder if he would be any taller (than the 4’9” that he was when he died). I wonder if he would still be in school. I wonder if he would still have gone for a major in music and a minor in history. I’m sure if he were here he would find a reason to keep going to school because he liked learning so much. I’m sure he would have let his hair grow out to the long, Eric Mathews look again (from Boy Meets World). I’m sure he would still be a Red Wings fan, and still NOT a Tigers fan. And I’m sure that this weekend he would be glued to the T.V. watching ESPN and the NFL draft. He loved the fact that it fell around his birthday every year. I went upstairs in our walk in closet last night and sat on the floor going through one of many bins of pictures that are up there. I was looking mostly for different birthday pictures, but ended up pulling out various ones that I wanted to put on here for today. It was a
Adam is done with school and is back home for the summer. He has the opportunity to job shadow with some Physical Therapists this summer, so hopefully he'll find that he likes the decision about what he has chosen to go into. He has decided to not work at SC Johnson this summer and to work at the apartments instead. The shift work was not his favorite thing to do, and last summer a lot of the days he was scheduled to work seemed to be on the same day that his friends were getting together to do something. He has also decided to not play football in the fall. I'm glad. He was playing just enough to get knocked around, bruised, and wake up sore.
Kayla is taking a spring class right now and doing field work at Beaumont Hospital in Detroit. Her field work ends this week and then she gets a little break before she starts her field work with Devyn at U of M. Her lease is up at the end of June for her apartment and she is thinking about moving again to a complex that is about halfway between where she works and school. We'll have to wait and see how that goes. She did find out that she is going to escort a group of kids to the camp in Montana when she goes. She'll meet with their parents and them (I think) before they go. I remember when Devyn escorted Shane's group. Back then you could still go with anyone flying through security and right up to the gate with them. Deyvn had yellow U of M shirts for all of the kids so they would be easier to spot when he was taking them through the airports (what a smart guy). Kayla is looking forward to her trip. Adam came downstairs after cleaning in his bedroom the other day and gave Kayla the words to the camp song that Shane had saved in their closet. Shane kept everything!
Even though today is a day primarily to remember our servicemen and servicewoman, you can't help but remember all of the people in your life that are no longer here. I wish strength to everyone who struggles on days like today. Tomorrow is a new day!
Take care everyone – 8 1/2 days left of school !! : D
nice trip down memory lane.
Shane at around two months.
I would see a picture and remember the clothes and how some of those clothes were his favorites, or mine. In some of the pictures it was so obvious how excited he would get over receiving the simplest gift. A Goosebumps t-shirt, a stuffed dinosaur, a Ninja Turtle figure……., it didn’t take much to make him happy. The pictures below are of how he would rather play in a box (when he was around one, and then again when he was around two years old), or in any cupboard or end table that he could fit in, instead of with his toys.
I truly believe that he is having a good time in heaven today celebrating with all of his new friends and family (in between the draft picks though, I’m sure).
Baseball for Adam is winding down. I think they are doing a little better than last year, but not as good as they would like. Next year, and the year after that, they should be pretty good. There are a lot of sophomores on the team and this is their second year of playing together. Two more years together and they should be able to read each others minds. He ended his winter semester last week with pretty good grades. Now we just have to wait for Kayla’s final grades to come out before the “games” begin between the two of them. Adam is checking into doing some job shadowing over the summer which I am happy about. It will give him an idea if he’s choosing the right thing to go into.
Kayla starts a semester of field work tomorrow in Pediatrics at Beaumont Hospital in Royal Oak. She has to be there at 7:30 a.m., which is early (she‘ll have to leave her place by 6:00), but at least she’ll miss the 8:00 rush hour traffic. The girl has a lot of road rage when she drives on the freeway, this should get interesting because it’s a lot of freeway driving to get there. She did get some exciting news since I last posted. She was accepted to work at “Camp Make-A-Dream” in Montana for a week at the end of July. It’s the camp that Shane went to when he was 15, and the trip that he made with Devyn (Child Life) right after Devyn started his job at the hospital. Right now Kayla is not sure if she’s escorting kids there on their flights, or if she is just working with them at the camp. I’m sure Shane is shaking his head in disbelief, and laughing and saying, “those poor kids,” or maybe, “poor Kayla” (ha, ha).
Back on New Years Day we had a small family (in-laws) Christmas get-together. I had written in the Christmas post about how seeing the Alaskan quarter made me think about the project that Shane had started back in 1999 was one quarter short of being completed. On New Years Day my sister-in-law had the Hawaiian quarter with her and put it in the little booklet to complete it. Less than two months after that she was diagnosed with breast cancer (how odd is that). She has since had surgery and her first dose of chemo, with her second dose coming this week. She is a strong person, and I think she is going to do okay with all of this. I was told about a book “Any Day With Hair Is A Good Day”, from someone else I know who is also fighting cancer. I bought the book for her, but before I gave it to her I read it. It was an easy read, with a lot of good information and advice (for anyone with cancer). I really wish Shane would have put together something on paper that could have been shared with kids his age that are going through some of what he went through. It is so much easier to hear about something from people that have already experienced it.
Speaking about books, last weekend Adam went to Saginaw for something and I asked him to pick up a book for me that I had heard about. A lady wrote a book (Driving Michigan Mile by Mile on I-75) about every exit on I-75 and what you will find if you exit off on them, or just a little bit of history about the surrounding area. Would Shane have LOVED this book or what? By the time he was in fifth grade he knew every exit number and what city was at each of them. Adam wanted to know why I wanted the book and I told him that it was Shane’s birthday present (smile). Kayla is home for the weekend and Adam has a ball game today either in Alma or Kalamazoo (maybe it will just get rained out), either way Kayla and I are having our birthday pizza for lunch and getting Adam’s to him somehow later. We can't break Shane's birthday tradition.
I think that is all that I have for now. It seems like there was something else that I wanted to write about, but if I thought of it over fifteen minutes ago, it’s gone now (ha, ha).
Take care everyone. Enjoy our spring weather!!
Sunday, April 5, 2009 10:07 PM CDT
(I'm not sure what all of the rectangles are about, but I am waiting a reply from an email that I sent them)
Today is my baby boy's 20th birthday. Man, I'm getting old. If Shane were still here, right now I would have a 20, 21, and 22 year old, for three weeks anyhow. Then Shane's birthday would be here and change everything. Adam is in the middle of his baseball season. So far so good. He has 2 home runs so far - YAY !! There is a schedule of course, but they don't always follow it because of the weather and make up games. We just found out this morning at 8:00 that his game for the day down south was cancelled and that he would be able to come home. It was a nice short visit for him, and Kayla. She wasn't too happy on her way home last night when she found out that she was making the trip up for his birthday, and we had just found out that we were going to have to make a trip down 30 miles west of her for a ball game. It all worked out though, thank goodness!! He has some hard classes this term so we'll see how he does. He has a game plan for the next few years so at least he has a good idea of what to expect in the future. This semester is done the week after Easter, then his spring session (he HAS to do 2 spring terms sometime while he's going to school there) will begin a week after that. Have I said lately what a RIP OFF I think college is. Between the price of the classes and all the extra fees and charges for some classes, then don't forget the books, and then don't forget all the ridiculous classes that they have to take that do not pertain to their major at all. . .RIP OFF!!! Okay, I'm done with that vent.
Kayla goes to school till the end of April. She signed up for spring and summer classes too. She didn't have to, but some of the classes that she needs, or wants to take, are only offered once during the year. Here is another RIP OFF when it comes to going to college. She is going to start her internship soon. She has to PAY to do the internship at a hospital (not at the school, but the school gets the money), and then she has to work there for the semester for free. Leaving her not a lot free time to work at her job. During the spring term she is going to be working at U of M with Devyn (Shane's Devyn from Child Life, but is now a Rec Therapist). I am sure she is going to LOVE it! He is going to teach her a lot (Shane is probably thinking that's what we should be afraid of - ha, ha). She has a few applications that she is sending out to work at kids cancer camps this summer. One of them being the one in Montana that Shane went to with Devyn. Speaking of Devyn (again), he came to one of Kayla's classes at Eastern and talked about his work and some of his experiences. There was a story about Shane that he wanted to share, and before he started he looked over at Kayla to make sure that it was okay with her. She said yes, but later called me and wanted to know how he knew who she was out of everyone it class. I met Devyn this week for dinner in Ann Arbor and asked him. He said he just panned the classroom, and he knew that it was her. Too funny!
I received the RED GREEN book that I talked about in the last entry. Steve Smith (Red) and Mag Ruffman signed the cover saying, "Thank you for sharing Shane's journey with us." How nice is that? What's nicer is the letter that is inside the book (pg 308) from Kevin (Holli's dad), to Steve. He is telling Steve about the impact that he and his show has had on people. The part about Shane says. . . a sick boy diagnosed with cancer at a young age and led a life filled with medical challenges. One of the positive forces in his adolescent life was Red, Harold and the Possum Lodge. Each episode was an avenue that offered a youngster an opportunity to leave all of his reality behind and for a half hour, become part of the Possum Lodge. For many years his love for all of the characters and the lodge grew stronger. In his last year, you Steve, sent him some gifts, an autographed photo and a little note wishing him well. This thoughtful gift came in the post after a long hard day of medical treatment and as his mother related to me "he was giving up on that day, he cursed life and had one of the worst days of his life, but when we came home, there was a care package from the Possum Lodge filled with gifts and he later exclaimed that it was one of the best days of his life!" Steve, how could you have known? Shane was buried wearing his Red Green tee-shirt that he purchased from a studio visit, and your gifts of love were there as well. What a nice memory to have printed in a book. Shane would LOVE it!! Over the 10 plus years that he was treated for his cancer, there was probably less than 10 times that he ever complained about anything, or let anything get him down. I do remember that time that Kevin mentioned that is in the book, but I don't remember what had happened to put Shane in that "down" mood. The only thing that ever really bothered him while he was being treated for his cancer was when he had to miss something that was important to him. Other than that he was always just a happy, smiling guy.
March was our time of year when Shane's cancer progressed in his head real bad. Oh the things we went through back then. This year I think I thought about it more than I did last year. There is still no rhyme or reason to that. I know this year I skipped church quite a bit during Lent. The Lenten Season and I just didn't seem to get along. We all know where it leads, and I just didn't want to sit and listen to all of that (bad, I know). I did go to church with Adam today. Of course looking at the songs that they were going to sing I saw "Jerusalem My Destiny". One of Shane's favorites, and was the last song that was sung at his funeral. My eyes watered for a little bit just anticipating when the song would start, but all I could do was sing it and think of him, and how he use to get excited when he knew it was a song we would be singing during mass.
That's all for now. Thank you for still checking in on us, and for thinking of Shane!!
Thursday, December 31, 2008 10:32 AM CST Happy New Year to everyone!!! From the pictures at the top, plus some that are not there, it�s easy to see that New Years Eve was a fun time for Shane. From having his grade school friends over for an overnight party in the basement, to trying to stay awake to watch the new millennium begin, to going bowling, to going to Stacy�s for crab legs, he truly enjoyed this time of year!! Be safe everyone!!
Thursday, December 25, 2008 1:32 AM CST
Thankfully, the months of November and December seemed to fly by this year. It always helps to stay busy. Christmas shopping went pretty well, I ordered a lot online so I could bypass the stores as much as I could. Yesterday I did some last minute shopping and ended up leaving a bag at WalMart when I left. I didn�t realize it until after they had closed. This should be interesting when I go there tomorrow to see if they have it. Our Christmas tree shopping was fun as usual, and cold. The guy that runs the place probably thinks that we're crazy. We just run around out in his field going from tree to tree saying how about this one, how about this one. We kept our tradition going one more year and got another ugly tree. I love ugly trees. This one though is not only ugly, but huge. It was too tall when we brought it in the house (left quite a long, green line on the ceiling when we stood it up), so we had to cut some off of the top. The body of it is so big that it completely blocks the patio door. They all end up looking good though once we get the decorations on.
I�ll write more later, but I first want to say that on Monday I met with Shane�s nurse, Kim, down in Ann Arbor for lunch. She is moving next week to South Carolina and I wanted to get together with her one more time. We had a great visit, did some reminiscing, and looked through a small photo album that I took down that Shane had started when he was young. It was kind of like a time line of his journey with cancer. I ended up putting in the pictures at the end of the album, mostly because he lost interest in doing it after awhile. Those pictures brought back a lot of memories, and funny stories when we looked at them. I stopped at the hospital before I started for home. I was able to see so many people while I was there. I ran into Dr. Yanik in the hallway. I haven�t seen him in a few years. I was really happy that that happened. When I went to clinic they were truly over-busy so I didn�t get much of a chance to talk to them. I know I�ll get down there again sometime. The whole day was such a perfect day.
Well, that�s all for now. Everyone stay warm (I hear on Saturday it may hit the 50�s),
Sunday, November 30, 2008 9:05 AM
Quite a few things have happened since Kayla and KoKo�s birthday. School is back into full swing and going pretty good. For some reason I volunteered to teach a 3rd grade religion class at church on Monday nights (what was I thinking?). I think the majority of people think that girls are the talkers. Let me tell you, I have only five boys, and four of them I would hate to be in a hostage situation with. They cannot be quiet for more than a couple of minutes at a time. Bribery is starting to work pretty well though. On September 27th I met with Shane�s nurses Kim and Kerri (I really need to see if I�m spelling that right) for the Michigan � Wisconsin game. Diane (one of his night time nurses) couldn�t make it this year so we asked Shane�s Child Life buddy, Devyn (who just recently moved back to MI), if he would want to go.
(Clockwise- top left - with Kim, Kerri, Diane, and Devyn)
It was great to see everyone again!! I was given so much flak leading up to the game by my Michigan State fans at home. How I should just stay home and watch them �lose� on T.V.. How Wisconsin was going to just �kill� Michigan��� it was bad. I have to say that that was the BEST, most exciting game that I ever remember going to. The whole 4th quarter everyone stood. Shane was definitely with his Wolverines, and us that day. The final�. Michigan 27, Wisconsin 25. What an upset!!!! Speaking about U of M and football, one of their BIG games that they play each year (the other is of course against Michigan State), is their last one against Ohio State. Now, I know this could have also been an upset for Michigan, but I really wasn�t counting on it. I knew deep down that it was going to get ugly. Little Christi Thomas Christi�s site, who also fought Neuroblastoma, loved Cedar Point, traveled around the U.S. trying to find treatments that could help her, but became an angel in September of 2006, was from Ohio. Her mom, Angela, is a teacher and going for her PH.D at Ohio State. She was at the game this year and had this picture taken�
When I checked my email after the game I found an email from Angela with the subject saying �OSU/MI Game � pic for Shane�. I emailed her back saying that Shane would have thought it sooooo �not right� to see the band making that block �M� on a football field with all that �RED� around it. She said that the band pulled a good one on the OSU fans. That they had started playing a patriotic song when they came out onto the field, and that everyone was clapping with them. Then they slid into their fight song and everyone continued to clap for a little bit until they realized what they were clapping to. Shane would have LOVED that!!����� My next big news is something very special about Shane, and I truly wish that he were here for it. Shane was the BIGGEST Red Green fan. There were days when I swear, that show was the only thing that got him out of bed. It use to come on everyday at 12:30 pm. Shane would always tell me to wake him up by 12:15 so he had time to get downstairs and on the couch before show time. Back then the new shows were shown on Friday nights, and more reruns were on for two hours on two different channels on Saturday night. Shane knew them all. Even when he was feeling crappy, and in pain, those shows could still get a smile on his face. It was either the Friday before he died, or the week before that, that he was able to see the show on T.V. that we went to the taping of in Canada. I was so glad for that. Anyhow, Shane had a special friend, Holli, from back in his middle school years. He became attached to Holli�s family, and shared his love for Red Green with Holli�s dad, Kevin. During one of Shane�s hard times, Kevin sent a letter to Steve Smith (aka Red Green) telling him about Shane. Steve then sent a package for Shane that included a Red Green bobble head, an autographed picture, and other things. I cannot explain in words how excited Shane was about the whole thing. Kevin was contacted earlier this year and asked if the letter that he wrote about Shane could be put in a book that they were writing about Steve Smith. He told them yes, and he was also invited and went to a taping of a show called �We�re All In This Together� (same title as the book). At the taping he was able to meet, talk to, and get pictures with cast members of the Red Green show. HOW EXCITING!!! He said he thought of Shane while he was there, and talked about him with Steve. I know Shane was right there with him. The book is out in Canada now, and I contacted someone there that said they would send me one. I can�t wait!!
Everything seems to be going good for Kayla and Adam at school so far. I guess we�ll know for sure when final grades come out in December. Kayla is starting to do some clinical work this semester. She has 30 hours to complete, and she is doing them at the Children�s hospital in Detroit. It�s not the type of work that she is going to school for, but it is an experience in a hospital setting, and working with children/young adults. We moved her �AGAIN�, in October. We had found a nice apartment halfway between her job and school, but then found out that she would have to pay $2000 if she broke her lease at her current place. What a rip off!! Once her current place found out that she was checking into moving, they offered her a different apartment in a different building there. She needed to get away from a new neighbor that moved in below her, plus the windows and patio door in her old apartment were letting the wind blow through like crazy. Her new place is much better neighbor wise, wind wise, and the laundry room is right below her instead of a building away. She is currently writing a report, not just about Shane, but about the treatments that he received after he was diagnosed. She called me before she picked her topic and asked me if Shane was ever on any trials while being treated. I had to laugh, and then told her that �everything� that he did was a trial. She then needed the details. I started to write things down, but there were gaps that I couldn�t remember what treatments he was doing at the time. I have to say that that kind of bothered me. I told her that I would try to get some of his information from the medical records department. She wanted to know if we could just get all of his records. That also made me laugh. I�m sure Shane was up in heaven rolling around in laughter too. When we first started going we would carry his records with us from appointment to appointment. Then they started getting too heavy to carry so we would put them in a wheel chair and push them to where we were going. Then they got so big that they told us to have people call them with what pages they needed and they would be sent. I think after 10 years of going there, Shane probably has his own room for his records (ha, ha). I ended up calling down to Ann Arbor and asked if I could get copies of different things. I wanted more doctors notes from clinic appointments because I knew that they would write down the treatments that he was getting at the time. I made a mistake and wrote on the request form that I wanted all of the chemos that he had received. I meant all of the �names� of the different chemos that he had received. I was thinking about 100 pages that I would get and have to go through. When they notified me that they were ready, they said there were 738 pages. Uh oh! When I picked them up and started to go through them, they had printed ALL of his chemo orders from different times. Each day had a page, each chemo had a page, and it wasn�t in chronological order. It was crazy!! Kayla�s report has to be 10 minutes long. I don�t think she�s going to have a problem with that (ha, ha).
Adam�s football season is over. He was able to play some on the varsity team this year, and also on the J.V team. I found it kind of fun just watching him on the sidelines. He�s not the most patient person out there, always pacing around. He�d rather be out on the field knocking people around, or just running around to stay warm (ha, ha). He was home a couple of weekends ago and we were figuring out his money situation for the rest of the school year, and if he was going to have enough. It ended up that with his current balance, he would be able to spend $2.95 a day until the end of the school year. We laughed at that. He allowed himself a small amount for Christmas gifts too. After we told Randy the good news, he remembered that he had a check for Adam to reimburse him for his school books that he had bought back in August. Boy was he excited to hear that.
The first time writing November this year I cringed, and I tried to avoid writing it as much as possible after that. This month is nothing but re-living many things. Some happy, and definitely some sad. Yes, it is easier, but I HATE it all the same. Who would think that seeing the Alaska quarter for the first time would bring me to tears, but it did. Back in 1999 when the state quarters started, Shane was soooo excited about collecting them all. I knew back then that he probably would not be here in 2008 to see the project finished. My wish back then was for him to make it to 2004, so he could get the Michigan one and put it in his little binder that he bought. He was able to do that, and I was very grateful. I have been keeping up with it ever since. Seeing the Alaskan quarter made me realize that there is only one more left to collect, and then his collection will be finished. Finished, just like his life here on earth. Last week I took out the grave blanket that I had made. It is all U of Mish of course. I think this one is the best so far. I hope you like the new slide show of Shane above. Just a few more pictures of him enjoying his life that were captured. He did enjoy his life, that�s for sure.
Thank you for still coming here, and for remembering Shane!!
Love you Sweetie, and still missing you and KoKo more than words can say !!!
Saturday, October 25, 2008 I'll update again soon. What a game today. I know they were worried for awhile. GO BLUE !!!
Friday, August 29, 2009
HAPPY BIRTHDAY, KOKO !!! I really miss all of your Shenanigans! (Wow, he would be 14 years old today!)
Thursday, August 28, 2008
HAPPY BIRTHDAY, KAYLA !!! (and Randy, did anyone know that their birthdays are on the same day?) You've had quite the year doing "adult things" (as she calls them). You are officially all grown up (yeah, right! Ha, Ha)
Wednesday, August 27, 2008 10:32 PM CDT
It’s hard to believe that it has been four months since I last wrote anything here. Those four months, just like the almost four years since Shane was here, have quickly flown by. I started the summer with a small make over for myself. My hair is cut off shorter than I can ever remember it, and it is now straight. Kayla doesn’t “ever” remember me with straight hair. I’m getting use to it finally. As usual the summer has flown by. I remember in June saying, ‘it’s still June, I have 2 more months off, I’ll get to my ‘to do’ list soon.’ What was I thinking? ……All the years that Shane and I went to Ann Arbor, I never went to the Art Fair there (probably because he wouldn’t let me – ha, ha). Well, I can say now that I’ve been there. It was, I think, the HOTTEST week of the summer (that reminds me of a Shane story I’ll tell down farther). Everyone should go to the Art Fair at least once. I parked at the high school by the Big House (our favorite parking place), and took a shuttle bus downtown. Once I got there I walked and looked, looked and walked (notice, I’m not saying I bought anything). Finally I decided that I brought money to spend, I was going to spend it. I ended up shopping at the stores behind the art booths. I did find a couple, small things at the fair though. The whole thing is HUGE. Just streets and streets of booths. You can get a map that shows the layout of it, otherwise I think you would either get lost, or miss a lot. There are so many amazing (really different in some areas), things to look at there. Some of the prices were amazing also ($$$$$). I’ll probably go again sometime. Other than that I spent my summer working at the apartments.... That’s pretty much my summer.
Adam is going to give football a try again this year. He finished baseball in May (FINALLY, after 3 weeks of make up games), came home and started to work right away. He went back to school on the 17th already to start practice. His one knee was bothering him a little through the summer so he had an MRI done on it. This time he went by himself. I just gave him the only advice that everyone should get when getting that scan…..”Lay still.” It came back showing that he has a little arthritis there (he’s getting old - ha, ha). Something he’ll have to get use to. His first football game is on the 6th, with a scrimmage this week. Hopefully this year he will stay healthy, and make it through the season. Hopefully he will also do a little better in school (right Kayla? ha, ha).
Kayla, well if someone would have told me when she was in 9th or 10th grade (we refer to those as her “dark years” (Shane loved that term)), that she would be doing this well, I would have called them a liar. She finished her first semester (Anatomy and all), at Eastern and did well enough to get on the Dean’s List (YAAAYYY Kayla, right Adam?). I’m sure Shane would be wondering how she managed to do that without his help (ha, ha). In June we moved her from Ypsylanti to Saline (not Ann Arbor – darn it). She’s a little farther away from school, but closer to where she works. It’s a nice, quiet little town. Her job has turned out so good for her, and me too really. The family that she is with is almost like a 2nd family to her, and I feel that if anything came up and she needed something right away, they would take care of her (which is a big relief to me). She just got back from spending almost two weeks with them in Utah. I took her to the airport and walked in with her as far as I could. What a hoot she was leading up to the day and time that she flew out by “herself”. The family she works for went out there the week before. The anticipation of her flight out was getting the best of her at times. She made it there and back without any trouble, and had a good time. The night before she came back we were on the phone and it dawned on us that she had gone to a state that Shane had never been to. Usually it was Shane that had those bragging rights. School for Kayla starts on the 2nd. She’s starting to be able to take classes for her actual program now. I’m not sure if I’ve said it before, but she’s working towards a job with Child Life. Wouldn’t that be something? All the things that Child Life did for Shane over the years, the smiles, the fun, the friendships, and giving him the feeling of security and peace of mind….. that would be great if Kayla could be a part of that for someone.
In the beginning of July, Shane’s good friend and locker partner, Stacey, had a little baby girl. What a cutie, and a tiny little thing right now. Stacey brought her over a couple of weeks ago and we had a nice visit. I wonder what Shane would have to say about all of this. I wonder even more if Stacey would have ever asked Shane to babysit for her – YIKES, that’s a scary thought (ha, ha).
This is my story that I was reminded of earlier. The high temps every summer always remind me of the fun that I had with Shane when he was here. He truly was our conscience at times. I don’t think I have a real foul mouth, but once in awhile a ‘not nice’ word or two may slip out. Well if it happened and Shane was in hearing distance he would be all over it and come up to me and give me a swat. I bargained with him one time and talked him into giving me 1 freebie everyday (which I didn’t always need). During the summer months though, when it gets really hot, I have been known to get a little testy (I’m much better now). So during those times I talked Shane into giving me 2 freebies on days when the temperature, or heat index (I was thinking wasn’t I) got to 85 or above. I even tried for 3 freebies if it got into the 90’s, but he wouldn’t budge on that one. I could be in another room and a word would slip out, and I would hear him yell, “That’s 1.” Too funny!! He had a ball with it.
This is my last week of summer vacation before school starts and I wanted to end it right, so I went down to Ann Arbor on Monday for a visit. I ended up getting there later than I wanted so I missed some people, but clinic was pretty empty so I was able to visit with Shane’s nurses, Suzie and Mary Jo for awhile. Sheila from Child Life wasn’t there, but I found out later that she was with a group of families in Colorado at the Dude Ranch that we went to in 2000 (that was so much fun for all of us). I went up to 7 West next and got to see one of Shane’s night time nurses, Janelle (I hope I’m spelling these right). There are only 3 nurses left on the 7th floor that were there when we were going. All of the others have either moved to different departments, or left the hospital completely. On my way back down I stopped at Nuclear Medicine and Out Patient Surgery. I knew that Lhatti from Nuclear Med would be gone, but I left her a note with the tech that was there. Walking through that waiting room I remembered sitting with Shane and waiting for his MIBG scan. He had over 40 of them, and each time we went we took a movie for him to watch during the scan. Lhatti would come in and get him, and as we were walking out she would ask, “So what are we watching today.” In Out Patient Surgery I was hoping that nurse Cathie was pulling a late one like she sometimes did. She would always call us the night before Shane would get a bone marrow done with our times, and our do’s and don’ts to follow. The last couple of years that we were going down she started adding ‘requests’ of what she wanted Shane to wear (his Hawaiian shirt, certain sandals….. Shane had fun with that). She had left for the night already on Monday, so I left a note on her desk. When I went to put it down, there in front of me was Shane’s senior picture pinned to her wall. How special is that? Four years, and he’s still there. The rest of my time down there I just walked all around the hospital remembering different things. 99.9 percent of them good. As I left I drove by the new Mott Children’s Hospital that they are building. That place is going to be huge. It’s not scheduled to open until 2011 though. When I got home from my school meetings on Tuesday and Wednesday there were two messages on the answering machine from Lhatti and Cathie. It was nice to hear their voices again.
One last story before I go. Our family reunion that Shane loved to golf at was at the beginning of August. We were sitting there, eating and looking at everyone, trying to figure out who went with who, and Kayla pointed out one of my cousins. She said that he looked like what she thinks Shane would have looked like when he would have been older (40-50ish). I looked at him, and watched him for a little bit. She was soooo right. He is short, bald, walks a little hunched over (like Shane did from his cancer and treatments), walks sort of slow and cautiously, AND (what she didn’t know) he has cancer, and the outlook is very bad. In January no one thought that he would be able to make it to our reunion. It was a blessing.
Speaking of blessings, and cancer, if any of you reading this has not had the opportunity to see “The Last Lecture” by Randy Pausch, (you can google it), or read his book, I HIGHLY recommend it. What an up-lifting, inspirational story, and pep talk. All coming from a man who knew he had less than a year to live after being diagnosed with Pancreatic Cancer. He died at the end of July. Another opportunity lost for someone to make a difference in the world………Please REMEMBER, September is Childhood Cancer Awareness Month, and the 13th is Childhood Cancer Awareness Day. How many of you knew that before you read the previous sentence? How many of you will see many advertisements, or stories, pertaining to Childhood Cancer during the month of September (not many)? Ahhhhhhh, but come October, how many pink ribbons and advertisements will you see or hear ALL over the place (groceries, billboards, T.V., radio), pertaining to breast cancer? Am I bitter? Yes, just a little. All I want is equal quantity, and equal funding. That’s not much to ask, is it? So for the month of September could everyone just find 1 person at least to spread some of the statistics about Childhood Cancer (see below), and/or maybe make a donation to one of the childhood cancer organizations (Alex’s Lemonade Stand, Band of Parents, CureSearch, Children’s Neuroblastoma Cancer Foundation (CNCF)). You can google any of them for an address.
Thank you everyone for still coming here and reading. I really think this is more therapeutic for me sometimes than anything. Enjoy the rest of our warm weather! Oh, tomorrow is Kayla’s birthday, the big 2 – 1! She’s coming home and seems to think that we’re going to take her out to eat, and then buy her a drink. She’s too funny sometimes. On Friday is KoKo’s birthday. I’ll be putting pictures up for both. I hope Kayla has more or I’m sure I’ll hear about it (ha, ha).
Take care everyone!!
Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer. That’s the equivalent of two average size classrooms diagnosed each school day.
Cancer remains the number one disease that claims the lives of our children. Each year cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined.
Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
Research towards pediatric cancers (all of them) in 2006 - $179.6 million
Research towards breast cancer alone in 2006 - $584.7 million
(Sad, isn't it?)
Saturday, April 26, 2008 5:39 AM CDT
It’s hard to believe that Shane would be 22 years old today (I wonder if he would have been any taller – sorry Shane ~ ha, ha). On the 19th of April I read about the 13th anniversary of the Oklahoma City bombing. I guess you always remember where you were when things like that happen (just like when the Twin Towers fell). For me, 13 years ago on the 19th I was in a hospital room with Shane. He had already gone through 5 rounds of chemo (which was 5 different drugs running for a brief time each day for 5 days). The 6th, 7th and 8th rounds however were much harsher. They used the same drugs, but they ran continuously from day 1 through day 5. His first dose of that was the first week of April in 1995. I have to say that I think his body handled that combination worse than it did his two transplants. He spent over three weeks in the hospital, slept most of those three weeks, and ended up getting TPN (liquid food) for awhile. The bombing in Oklahoma happened during that time and all I did was sit quietly with Shane in his room watching T.V. Shane got better, and the doctors and nurses trained me well in running IV’s at home, and we were able to bring him home in time for his birthday. He never was inpatient on his birthday during the ten plus years that he was treated. He did end up down there on his birthday from time to time for outpatient chemo (the bottom, left picture up above is from his last birthday here on earth. I can’t think of a better place for him to have celebrated it at). I think it was his last three birthdays here that he gave up the traditional cake/ice cream celebration, and opted for having pepperoni pizza with candles on it. It was fun, and it was definitely something that we expected every year after he started it. So……… today sometime, I plan on getting a pepperoni pizza and having some for Shane’s birthday.
School is over for both Kayla and Adam. They haven’t seen each other since Easter. Adam said that she called him a week or so ago and said that she didn’t remember what he looked like (ha, ha). It’s going to be a couple of more weeks before their schedules will bring them home at the same time. Adam has been done for over a week now, but he has to stay through May 6th because they are making up all of their baseball games that were cancelled because of snow/rain. Out of 18 days, he has 17 days of double headers. He’s going to be one tired boy when he finally gets to come home. I think he starts his summer job a few days after that. A lesson that I do believe he learned while away at school is to maybe spend less of his summer earnings during the first semester of school (ha, ha). We’ll see !! No grades yet for him, or maybe he’s just not saying anything (hmmmm).
Kayla finished her exams this week and she couldn’t be happier!!! Between work and studying for exams, it’s been 4 weeks since she’s been home (I think the dog has forgotten about her – I doubt it). Her Anatomy class that we weren’t sure how she would do (thank GOD she didn’t have to dissect anything), she ended up with a B . Yaaaayyyyy Kayla!! She has started apartment hunting, and I hope she can find a good one for about the same rent that she is paying now, but in Ann Arbor this time. Shane would LOVE to hear her stories about how people drive down there. I can just hear him telling her that he had already lived it and drove for years in it without letting it get to him. Sometimes I think about how ironic it is that all Shane wanted to do was to go to school at U of M, and live down there. Instead, he ended up at CMU, and living in Mt. Pleasant, which he liked. Now, Kayla is living a stones throw away from Ann Arbor, and Adam is living a stones throw away from Mt. Pleasant. I think of Shane a lot every time I go to see each of them.
Before I end this I want to bring something to everyone’s attention. For one of Kayla’s classes she had to do a research paper about some type of medical topic. She chose to do hers on Children’s Cancer, Lack of Awareness, and Lack of Funding. I tried finding different resources for her to go to on the internet, and through the Neuroblastoma ACOR that I still belong to. It really got frustrating to me at times about how long I spent on the computer looking, and how little I could find. She was assigned the paper in January, and it was due at the end of March. I put together a list of kids names and ages for her that since January 1st, had either died, or their parents had been told that there was no more that could be done for them. All of them, but one, were fighting Neuroblastoma, and these were only kids that I know about through our ListServ. I’m sure that there are many more. From January of this year till the end of March there were 11 children that had died. The oldest being nine, the youngest being 2. One fighting for over 5 years, two only able to fight for seven months. One, dying one week shy of his fifth birthday. During that same time there were parents of six kids that were told that there was nothing more that could be done for them. All of them have been fighting cancer for over two years. Since the end of March, three of those kids have now died. It just seems so unfair for this to still be happening. I am SO GRATEFUL for Shane being able to fight for over 10 ½ years. I am SO GRATEFUL for all of the memories that were made, and all of the pictures that were taken during that time. I am SO GRATEFUL for all of the birthdays that we were able to celebrate together.
HAPPY BIRTHDAY, SHANE!! WE LOVE YOU, AND WE STILL MISS YOU LIKE CRAZY!!
Everyone go out and have some pepperoni pizza today!!
Monday, April 7, 2008 HAPPY BELATED BIRTHDAY, ADAM!!
Our computer wasn't working for a couple of days so I couldn't put this on here for Saturday (his actual birthday, sorry about the picture being so big). My baby is 19 now. Time has just truly flown by.
Saturday, March 22, 2008 11:46 PM
I was right about there not being much to write about. The house is pretty quiet, except for Kayla’s dog barking at everything that moves outside (leaves blowing, birds in the tree, mailman, garbage man, people walking, driving……). Hey, how did we get to keep the dog anyhow???? He’s the life of the house now.
I forgot the last time I wrote about something that I did in early December. The U of M Marching Band always puts on an indoor concert at Chrysler Arena before Christmas. Shane and I had gone one year and he LOVED it. I had decided to go, and used the trip to also haul some of Kayla’s things down to her apartment. The concert was great, and I have to say that my favorite part of it all is still when the band comes high-steppin it out of the tunnel. There is so much energy and excitement when they come out. Towards the end of the concert they were taking turns with other directors directing the band. I heard them say that the next song was going to be directed by Dennis, their old Drum Major from 04-06. I couldn’t believe it. Dennis is the Drum Major that came to Shane’s high school in April of his senior year to meet him. Shane was, and had been out at that time for awhile because of the tumors in his head. He made the trip to school that morning for the visit, and was so excited to meet them and receive the gifts that they brought for him. After the concert at Chrysler was done, I got Dennis in my sight and I worked my way through the crowd. I walked up to him, put my hand out and introduced myself, and asked him if he remembered coming to see Shane. He reached over and gave me a hug and told me that he would always remember that visit. He said that it was the very first “official” thing that he had done as a Drum Major for the band. He has graduated from U of M now, but he is going to become a doctor (I don’t know of what), so he is now starting at the hospital (I think) interning (???). He laughed and told me that it’s hard for him to leave the band, and that they still let him hang around and help out. It was SO NICE to see him.
Adam still comes home every weekend that he can. Baseball has started, but their games have all been called off so far because of all of the snow. During his spring break he traveled with them to Myrtle Beach for the week for kind of a spring training and some scrimmages. Randy went too, so I had the house to myself for a few days before Kayla came home for her spring break. I got a lot done in those few days. There are so many boxes and file cabinets full of things that I just tucked away while Shane was being treated. A lot of it I want to keep, some of it I know that it’s time to let it go. I have all the homemade cards from his days in grade school, and when he was older. To think that a lot of those kids have already graduated from college, and some from his class will be graduating from college too this year, is truly amazing to me. Sometimes while cleaning I have to just get up and walk away from it all because it gets too overwhelming. I guess I can use that as an excuse for my house being a mess at times (ha, ha). I recently went to the photographer that took Shane’s senior pictures and had them put a little collage together for me. I like the way that it turned out. I finished my picture wall in the living room. I had the picture of the three of them at Easter (the bottom one from up above), and the last picture of the three of them with Ko Ko that was taken (when Shane left for CMU) blown up. That wall is now complete. I have a few more ideas that I’m going to start working on soon.
Kayla is doing good at Eastern, and she likes it. Last year a girl was murdered in one of the dorms there and they kind of kept it quiet until after school got out. There was a big fuss, the President from last year is no longer there, and they now send student alerts for everything that happens around there. So for the first month Kayla kept calling saying that she was almost robbed, or that she was almost stabbed,…….. (alerts that she was receiving in her mail about something that had happened on, or around campus). She’s such a drama queen (ha, ha). I think parking is her biggest complaint so far (maybe one of her classes too), otherwise she likes it. She’s doing good living in her apartment. Her first gas bill for January was pretty small, February’s made up for it though. Her lease is up in July and she doesn’t plan on renewing it. She’s already looking more in the Ann Arbor area. I’m glad about that. It really is more of a safe place. She got a job a couple of weeks ago as a part time nanny, not babysitter (that is what they call it down there – ha, ha). The pay is really good, and she likes being with the kids. For someone who was, and still is, pretty shy out in the public, I give her a lot of credit for getting these jobs where she works when the parents are home a lot of the time (She still doesn’t like going through a drive thru and ordering anything though). She makes the trip home about every two weeks. While she’s here she stocks up on groceries because things are so much cheaper here. Both Kayla and Adam only have about four weeks left of school. Kayla is going to stay down there to work, and Adam has to stay at school a few weeks longer to finish the baseball season (mostly make up games). I guess that’s all of the news from around here for now.
Please think, and remember, and pray for, all of the kids who have fought the fight against cancer, who are still fighting, who are losing that fight (there are so many right now), and who have lost the fight (there have been so many young ones lately).
I hope that everyone has a Happy Easter.
Shane always loved this holiday. Any holiday really that he could get together with relatives and eat (he LOVED his dill pickles!!).
Friday, January 11, 2008 6:48 AM CST Are we glad that Christmas is over, YES, we are!!! It was a pretty non-eventful December for the most part. We didn’t go tree hunting until about 10 days before Christmas. Kayla, Adam and I ran around a yard (way out past the cemetery) looking for a tree. Then we took off to the back of their property looking (Randy stayed in the truck). We purposely looked for an ugly tree (that’s kind of our tradition around here), and ended up getting one that wasn’t as ugly as we had thought. There were some branches that stuck out a lot further than others. It didn’t have one top, but about 8-10 tops. And then we left the bottom branches dangle and branch out all over the floor. It was a softer tree than usual. so when the ornaments were put on (3 days after it was up – ha, ha), it weighed the branches down a lot. But it ended up looking like a nice tree, like they always do.
Shane and KoKo are still our angels up at the top of the tree.
Adam got home from school on the 13th. He brought a lot of his things back with him. He said that he had taken too much with him when he moved in back in August (he’s the kind of guy that just wears the same thing over, and over). He did pretty well his first semester. It is such a drastic change from high school. The expectations are so much more. He had one teacher (there’s always going to be one that I don’t agree with) that all he did was lecture from the beginning, till the end of class. His grade for the semester was on only two things. The first was a mid term exam, the second was his final exam (I really don’t like that). But it’s over, and he did pretty well in that class, and he is “THRILLED” to say the least that it is over.
We moved Kayla’s things down to her apartment on the 23rd. Does anyone remember what the weather was like on the 23rd?? While we were still at home it was 47, sunny, and windy. We knew that it was suppose to turn cold and start to snow, but that wasn’t until late afternoon. We were going to be home waaayyyy before that (right??). We had borrowed a large, covered, snowmobile trailer and had all of her things in it on Saturday night. We left by nine, so there was no reason that we wouldn’t be home by two-ish (ha, ha). Adam and Samantha drove in the truck with us. Mitch, Kayla, and the dog went ahead in their car. We all dressed light (no coats) because it was so warm when we left home. The wind on the freeway was throwing that trailer around so much we had to drive off on the side of the road at times to get it going straight again. Now I’m not the most patient person on the freeway (I am so much better than I use to be though). When your on the freeway, Shane use to say that the 1st lane was for those who drive the speed limit, or under. The next lane was for those that drive at least 75. And the last lane was for those that were in a hurry. Needless to say, we didn’t drive in the first lane very much. That day taking Kayla’s things down, the fastest we could drive without the trailer starting to sway all over, was 60. I could hear in my mind all of the things that Shane would have been saying on the way down. Once we got there Randy started backing the trailer up in the parking lot towards her apartment. He stopped then went a little forward. He stopped again and went a little forward, and then he got out. He yelled a crossed to us that he had lost reverse in the truck and that we would have to unload from there. (Oh, did I say that by noon the temperature had dropped over 20 degrees and the wind chill was unbelievably low). We had that trailer unloaded in less than 30 minutes. We were running. To make a real long, pretty funny at times, story short, the truck ended up losing drive also. We ended up calling Randy’s sister to bring her truck down, and Randy’s brother to bring his 4WD and flatbed trailer (to put the truck on) down. We had to push the truck up on the trailer (twice, don’t’ ask why), hook everything up, and then we left to come home. Adam, Samantha, Mitch, Kayla, and the dog left ahead of us. We took all back roads home to stay away from the wind again (boy did we take back roads - don't ask about our route either). After 4 ½ hours of driving we finally made it home (via Novi, Fenten, and who else knows what cities we went by - MEN! (they were just using the compass in the truck, trying to always head north)). What a day!! I pictured Shane in my head so many times during the day. Things he would have said, carrying in one thing and then sitting down for awhile before “maybe” going to get something else to carry (ha, ha). It ended up being a not so bad day really.
My life has changed again in another big way. Adam has gone back to school again, and Kayla has now left for her school. The house will be empty and quiet. When Shane was here, everything really seemed to revolve around him. Anything that happened in the house had to be planned around his schedule. His treatments, tests, when you knew he would be having good days, and when you knew he would be having bad days. Shane was diagnosed the week before Adam started Kindergarten. He died when Adam was in 10th grade. At times, the years in between those just seem like a blur. The past 3 years since Shane died seem to have flown by even quicker. There’s a country song out right now called “Don’t Blink”. The words that I think are so true are “Don’t blink, just like that your six years old and you take a nap, and you wake up and your twenty-five………” Make the most of every day!!
The Saturday before Christmas we had Christmas at my mother’s house (Shane use to love family get-togethers). That afternoon before we went, Kayla and Mitch, Adam, Samantha and I, went out to the cemetery to build a snowman. It was perfect wet snow for snowman building. We built him right next to Shane’s bench (we were careful not to roll over any of Shane’s neighbors). We put a U of M hat and scarf on him. He looked pretty awsome when we left. It rained the next day and his head fell off, but his middle has now become his head, and he still looks good. Shane is loving it I’m sure.
He looked MUCH better and bigger before his head fell off (and melted) and the rest of him melted in half.
HOW ABOUT THOSE WOLVERINE’S!!!!!! That was such a great game. I am so happy for Lloyd Carr that they won. I took some U of M balloons out to the cemetery one last time for this season, fixed the snowman’s hat and scarf, and made a huge block “M” in the snow around Shane. Every year when the kids were little (and older), I would walk around the snow and make a picture or write something to them (last week I wrote a big “dork” outside of Adam’s bedroom window (bad mom, I know), and put a distorted smiley face outside of Kayla’s bedroom window). Usually I make a big heart around Shane out at the cemetery. There’s a little airport out that way that planes fly over the cemetery quite a bit. I wonder if they can see the drawings from up there.
Well, I think that is it for now. I imagine that there isn’t going to be much to write about around here for awhile. Maybe I’ll have some good “Kayla out on her own” stories to tell next time I write. Shane would definitely be loving that. I wish everyone a Very Happy New Year!! ...... Really, make the most of everyday, and always keep those cameras taking pictures. Stay Warm!! (How about our preview to spring that we just had)
Tuesday, December 25, 2007
Thursday, November 22, 2007 Thursday, November 22, 2007
Merry Christmas everyone. I will update later this week. Miss you Shane!
Friday, November 30, 2007
What can I say about today other than three years ago a huge hole was put into my life. A hole that is, and will permanently be there until the day I die. Sometimes I feel like the hole is small enough that I can walk around it quickly, or jump over it with little effort. Other times it feels like I fall into it, and struggle to get out. Every year I wish there was a way to go from October 31st, right to January 1st, but there is not. So for two months I have good days, and bad days. When November 1st arrives I think to myself that maybe this is the year that it will be easier, and don’t get me wrong, it is easier. I recently realized that grocery shopping isn’t as hard as it use to be. I can walk past microwave popcorn, yogurt drinks, fruit gushers, and dill pickle relish without tearing up. I can drive on the freeway and smile when I see the first field full of Goldenrod (yellow flower that I’m allergic to). Shane use to always tease and say, “Hey look over there, hey look over there……, then laugh”, all the way down to Ann Arbor. I can smile when I see the first snowfall that is sticking to the ground and hear him in my head singing “Jingle Bells” to me. The RED GREEN show still makes me laugh, but I either leave the room, or change the channel when it comes to the “Man’s Prayer” at the end (I really wish that I would have pushed to get him in that scene when we were there for the taping of the show - lost opportunities that I can’t get back). Driving on the freeway in November and seeing all of the pretty fall trees is sometimes hard. It just reminds me of the ‘beginning of the end’ back in 2004. Last week I was going through VCR tapes, trying to find one that had Shane’s cousin in it when she was young (we were going to embarrass her with her boyfriend on Thanksgiving). We had taken it years ago (Mandy is now 26) to a family get together and Shane had so much fun with it. I was really surprised that he didn’t have it all labeled on the outside so we knew which one it was. Going through those tapes was fun, and a little hard at times. I have so many more to go through. Thank God for cameras.
When Shane was diagnosed with cancer, my life became a game of numbers. The first being August 18th, the day we found out that he had a tumor. From that point on whenever I see/saw a date, my mind immediately thinks, before diagnosis, after diagnosis.... Before his fist transplant, or after (in June 1996). Before his 2nd transplant, or after (December 1999). Before, during, or after his remission (98-99). Now it seems that the dates make me question more, before he died, or after he died. Shane was very much into dates and numbers too. He had it all figured out what the date was that when we came to it, he would have been living with cancer, more than he had been cancer free. He was 8 years, 23 days old when his tumor was found (if any of you knew Shane, you know that he had this all calculated out). When December 12, 2002 came along, he had cancer 8 years and 24 days. We never thought that he would have it for almost two more years after that (Dec. 2002 was the first time the doctors didn‘t think that he would make it much longer). Just recently another date has passed by. November 10th was the day that Adam has lived longer than Shane. It’s not that I dwelled on it, but I knew that it was a day that was approaching, and it was in the back of my mind for awhile now. The games that your mind plays on you at times.
A few things have changed and happened since I last posted. First, my job has been changed, again. I was at the Middle School for 7 years, and then I got transferred to Kindergarten. I thought that was the lowest grade that I could go. I was wrong. Two months ago I was transferred to Special Ed. Pre-school. Boy, that first week I thought I was going to die, or be killed. A couple of them were handfuls. Things have really calmed down since then. In the mornings we have 3 year olds, then in the afternoons we have 4-5 year olds. They are so cute, and the days fly by quickly. A few weeks ago I met 3 of Shane’s nurses from 7 West for a U of M football game again. The weather was almost identical to what it was last year. Rain, rain, and more rain. But when we got inside the stadium, the rain stopped and never came back. Last year it ended up being warm after the rain. This year we were not that lucky. We ended up leaving during the fourth quarter because it was pretty cold (we were wimps and Shane was probably shaking his head at us). After MI lost those first 2 horrible games, I started taking U of M balloons out to the cemetery every Saturday morning, and hanging Shane’s flag out our front door (for good luck). They started winning after that, which I thought was pretty funny. Yes, they lost 2 more games after that, but Shane wouldn’t have cared. I think it would bother him to know that Lloyd is leaving. He use to say that Lloyd Carr started at U of M football (1995), the same year that Shane started going to the games.
Things are changing for Kayla. After many trips to the Ann Arbor/Ypsilanti area, Kayla finally has an apartment down there. Her classes at Delta are not finished until mid December, but we had to get the apartment then (first of November) in order to get the price. We are SO glad that that is over. Her and I would go down and run to all of these complexes and hear their prices and deals, and then leave and be so confused at times. The apartment that she has is in a nice area, so that makes me feel better. I asked her what she was going to do if she ever saw a mouse in her unit. She said that she was going to call me (ha, ha, - I’m sure she will). She has her classes at Eastern scheduled, and all she needs now are her books. On one of our trips down we stopped at the hospital. It was the only time that we had gone there on a weekday. She went into clinic with me and we got so many hugs. Shane’s nurse, Mary Jo, told Kayla that she was so proud of her and what she is doing. Then she told everyone that was around us how Kayla hated high school, and how much Shane would come down and tell stories about her. She got to meet the Child Life girl that is in clinic now, and had a nice talk with her about what to expect to get her degree at Eastern (she had gone to school there also, and got the same degree). She also told her to come back when it was time to start working on her internship, which made Kayla very happy.
Football is over for Adam. He didn’t get to play because of his shoulder, but he did good pacing around on the sidelines during all of the home games. Samantha and I use to play “Where’s Waldo” when we would go, to try and keep track of where he was. He was never in the same spot for very long. Two days after they turned in their football equipment, he came home and picked up his baseball equipment. I’m glad that he has something to keep him busy over there when he’s not studying, or in class. I’m not sure how much I like his winter schedule that starts in January. He has classes on M, W, and F, but has T and TH completely off. I don't know how that is going to work out. Too much free time for him is not always good. He still comes home every weekend. I’m glad he picked a school that is close enough that he can do that.
I think that is all for now. Hopefully December will fly by. That darn Christmas song is already bothering me (Have Yourself A Merry Little Christmas). I hear it at least once a day, if not more (even while I was getting my yearly physical done the other day - that one made me smile). Take care everyone, stay warm, and please.... always remember Shane.
HAPPY THANKSGIVING, EVERYONE !!
I still have things to be thankful for, just somedays I have to think alittle harder about what they might be. Looking outside this morning, the first thing that came to my mind is that if Shane were here, he would have definitely greeted me with "Jingle Bells."....... Still VERY grateful for my memories!!
Happy Thanksgiving...... drive safe!
Wednesday, October 31, 2007
For some reason Halloween 1994 has been very vivid in my mind today. It was 13 years ago today that Shane received his first chemo treatment, ever. What a day to start it. It worked out really good for him though. He was feeling great that day, and that was hard for me to take. Most kids come in for their first chemo in a lot of pain, or feeling really bad. I knew it wouldn't be too long before the chemo would make him feel lousy. How can you explain to an 8 year old that he may be feeling good at that time, but something bad was growing inside of him and in order to make it go away, we would basically have to make him feel really sick (the chemo). His first treatment went pretty well though. He would get sick, then bounce right back up so he could get back to the playroom there. He was hard to keep up with at times back then, always on the go, always talking (ha, ha).
I'll probably do an update sometime next week (after the BIG game on Saturday)!
Friday, September 14, 2007 8:56 PM CDT
I’m a little later than I said I would be in updating. Where do I begin???? Not long after the 4th of July I did something that I really never thought that I would ever do again. I went to Cedar Point. Adam and Samantha wanted to go. I really didn’t want them to get up early and drive all the way there, then stand in long lines all day in the heat, and then turn around and make the drive back late at night, so I ended up volunteering to be their chauffer for the day. I planned on just dropping them off at the park and then going shopping and walking around Sandusky. I even thought about maybe going a little south of there and visiting Christi Thomas’ mom, Angela. We have exchanged emails over the years, but have never met in person. I went online and found a store in town there that advertised having many angel and inspirational gifts. How could I pass that up?? It was amazing to me to not only find that store online, but to find the directions to it so easy, and not far from Cedar Point. After dropping the kids off at the park I went there. I spent a lot of time inside looking at everything, narrowing down my purchases, and then spending waaaayyyyyy too much money. I’ve thought about Cedar Point many times since Shane died. I never thought that I would be able to go back there. I just thought that walking into that park without him, and not being able to see his face light up with excitement as we got closer to the gate, would be too much. I was wrong. It was a semi-emotional day for me. I waited until five to go in the park (it’s cheaper), and once inside there were more memories that brought smiles to my face than tears. My funny memory for the day was remembering how one year when we had gone Shane was STILL too short (just barely) to go on the big roller coasters. Kayla and Adam had grown taller than him by then, and his friend that went with us that year was tall enough also. Poor Shane, the look on his face when he thought that he would have to wait another year before he could get on those coasters, I couldn’t take it. We stopped at a drug store on our way to the park in the morning and bought two layers of shoe cushions to put in his shoes. It worked, thank God!! The little bar that they swung over the kids’ head back then to see if they were tall enough, just barely stopped when it got to his. Once inside this year, I ran right into Adam and Samantha just as I got inside the park and reached a main walkway. All of the thousands of people in that park, what are the chances that I would run into them right away. They were sitting on a bench looking at a map of the park, planning their next move. I had taken my camera inside to get some pictures, so I snuck a few of them when they weren’t looking (ha, ha). It was a long day, but a nice one. The next day I was checking on Christi’s site and guess what I found out??? Christi’s mom and sister (Shayla), were at the park the same time that we were. We probably walked by each other and didn’t even know it. Small world.
Stacy’s wedding was perfect. She had everything planned out so nicely. When I got to the church and was walking in the door, Stacy’s sister found me and said that Stacy wanted to see me before the wedding started. As I was making my way to the bride’s room, her brother saw me and said that he was suppose to take me to see Stacy before the wedding started. Hmmmmmm, I was wondering what was going on then. When I walked into the room Stacy was sitting down trying to stay cool (it was soooooo hot in there). She said she had to show me something that she had bought for her wedding day. She lifted her dress over her leg, and there on her leg she had a U of M garter belt. How special was that?? I had taken Kayla’s camera with me to the wedding and I took a picture of it, but Kayla can’t find her USB cord to get the pictures off of the camera (it’s probably lost in her bedroom somewhere (sorry, Kayla)). Shane would have loved to have been there.
On August 19th I moved my baby into his room at Alma. Doing the school shopping for his big move brought back a lot of memories of school shopping for Shane’s big move to CMU. It was hard at times. Going to college was something that Shane worked so hard for during high school. It was his dream. I guess that’s why it bothers me now to see kids in school just putting in their time, but not really giving it much effort at all. What a waste. Adam’s move was a little chaotic. His football camp started in the afternoon that day. We moved everything into his room right away when we could. Some of the get-togethers for football in the morning kind of ran over. All of a sudden it was time for a parents meeting, Adam’s camp started thirty minutes after that, no one had eaten……. We had to make a quick, abrupt good-bye! It was kind of bad really. His first couple of days were a little rough. The gloomy weather didn’t help, and the fact that football camp was mostly meetings (talk, talk, talk - Adam‘s ADHD that he diagnosed himself with was setting in - ha, ha (by some college law they could only practice on the field for 3 hours a day that week, the rest was verbal)), didn’t help him much at all. By his second week there, all of the freshman were now on campus and he had 1 pre-term class to go to, which made things better for him. Now he is in his second week of full, blown, college, and he is doing great………. Well sort of. Before football season officially started he was called up to play in a scrimmage with the varsity team. He played quite a bit, and was pretty excited about it. At a practice four days after the varsity scrimmage though, Adam dislocated his shoulder. They took good care of him there and took him to emergency to have it looked at and x-rayed. A couple of days after that they took him to see a specialist that the team uses. Needless to say, two more specialists, and one MRI later, and we finally know what’s going on inside his shoulder. One doctor said wait six weeks before starting rehab and playing football. One doctor said start rehab now so he wouldn’t lose strength in it, and then he could play football in six weeks, but now after having an MRI done, it shows something other than what they thought. He is now suppose to stay away from sports for three months. It seems that he put a dent in the capsule (??) around his shoulder when it dislocated, with a very small fracture, and that the tissue was also torn. The tearing and fracture will fix themselves with the time off. The dent is just something that will stay there. I think because of that (???), he was told that he will have an increased chance of dislocating it again sometime. We’re going to think positive though (My money is on that it will never happen again (that’s the nurse in me predicting that – ha, ha)). When I picked up the MRI results and read them, there was a comment that said, “limited examination due to patient motion” (that darn ADHD - ha, ha). Shane would have been laughing at that. All of the MRI’s that he had, I don’t remember that comment ever being written on one of his results. Well, I guess I should explain though that when Shane was younger and would adamantly refuse sedation, I would literally start crawling inside the bottom of the MRI machine to try to calm him down, talk him into laying still for just a little while longer, or offering him the best bribe that I could think of that would get him to lay still until the end of the test. He came out of those darn MRI’s sometimes with some pretty pricey toys or gadgets. I guess I should have gone in with Adam and maybe done the same thing with him (ha, ha).
Kayla is working on her last semester at Delta. She’ll have an Associates when she’s done. She’s then planning on transferring to Eastern in the winter to get a degree in Speech Pathology and Recreational Therapy. Somewhere during that she wants to also work towards getting a Child Life Specialist certificate. You go girl !!!! The process of getting her signed up at Eastern and finding a place for her (and Mitch) to live (it is really, really, close to Ann Arbor), I’m sure is not going to be an easy one (we’re talking Kayla here). She’s got her goals set, and she’s staying focused. I hope it all comes together for her.
I’m not sure how many of you know this, but the month of September is Childhood Cancer Awareness Month. Did you know that:
* Childhood cancer is the #1 killer of children (taking more lives than Aids, Asthma, Cystic Fibrosis, and Diabetes, combined).
* 14,000 children will be diagnosed with cancer this year.
* About 2,800 of those children will not survive.
* Only three percent of the budget from the National Cancer Institute goes toward pediatric cancer research.
I have a couple of links to share. Each has something to do with helping to fight Childhood Cancer. The first is
Money that goes to that organization is used specifically towards finding treatments for children’s cancer. They are doing wonderful things. ……….. The second one is about an important journey/fundraiser specifically for Neuroblastoma that is taking place right now as you are reading this. It is called Loneliest Road Campaign . There is a group of five fathers who are biking across the United States with the hopes of raising awareness, and money for NB. The treatment that they are specifically raising money for is the Mouse Antibody treatment at Memorial Sloan Kettering. That is the treatment that Shane was able to try exactly four years ago from this time. Many kids have such good responses to the treatment, especially for the kids who have disease in their bone marrow. Shane didn’t have any response, but he also didn’t progress at the time that he received it. Which that alone was a miracle because he had gone over two months without any chemo then. These five fathers each have a child that is currently fighting Neuroblastoma. You can use the link and follow their journey as they go from California, to Washington D.C............. My next few links are a daily reality for so many families, ours included. There have been so many kids who have died recently from Neuroblastoma. These links will take you to their sites. Please take the time and visit some of them. Yes, they may be depressing for some, but they are such a reality for so many. I can't get the links below to work (I've been trying), so you'll have to copy and paste the addresses in the address bar (sorry).
http://www.carterfinger.com/ - Little Carter, who died 8/18. He would have been in 2nd grade.
http://www.caringbridge.org/visit/lillieboyte - Young Lillie, who died 8/28 at the age of 3
http://www.caringbridge.org/visit/christopherramsey - Little Christopher, who died 8/8 at the age of 4
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=elesha – Young Elesha who died 7/22 at the age of 5
http://www.paulsaxon.com/ - Little Paul, who died 7/14 at the age of 6
http://www.caringbridge.org/visit/lydiaf - Little Lydia, who died 9/8 at the age of 2
And... Little James, who is only 5 years old and is now near the end of his fight.
http://www.caringbridge.org/visit/jamesrunde
Please remember what this month is, and please spread the word out to everyone that you know. Those links above are really just a FEW of the children who have recently lost their fight with cancer. More needs to be done. ALL children should be given the chance to reach adulthood and make a difference in the world.
I ended the summer by having a rummage sale over Labor Day Weekend. What was I thinking!!!!! I haven’t had one in YEARS. After doing this one, I now remember why. I promise you here and now, that I will NEVER again have another rummage sale. I did get rid of tons (I kid you not) of things. My walls in the living room and kitchen are bare. Yup, I sold everything. It drove my mother nuts. If anything goes up on those walls, it will be photos. I kind of like the bare look though. If you're wondering if I got rid of any of Shane’s things, not too many. Some of his clothes that he didn’t wear too much (none of his U of M shirts, or any of his favorites). As I was going through things that had been put away years ago, I kept pulling things out and putting them in a pile to keep. What I’m going to do with them, I really don’t know. I guess it just wasn’t the right time to get rid of some of his things. While we were moving things around in my mother’s garage so we could get things set up, we came a crossed some large cardboard cut outs that I had painted years ago for one of the Motts cancer picnics. The theme that year was “Grease”, and Shane was the one that designed the front of the T-shirts that year. I made Adam and Samantha, and Kayla and Mitch come over so I could get their pictures taken with them.
Thank you for still coming here and checking on us. You have been our support and extended family for so long. Before I end…………. What does everyone think Shane has been doing up there in heaven the last two Saturdays. He obviously doesn’t have as much clout up there as I think he does or the Wolverines would be 2 - 0, instead of 0 - 2. I plan on taking some U of M-ish balloons out to the cemetery on Saturday, and definitely hanging Shane’s flag outside here. Both for good luck, it can’t hurt...... Yesterday while I was looking through a book at school, I looked up the date September 13th to see what special birthdays or anniversaries were on that day. Again, what are the chances of this happening, yesterday was the 38th anniversary of the first Scooby-Doo show being aired on T.V. (September 14, 1969), AND it is also Ben Savage’s birthday (Cory Matthews from Boy Meets World - One of Shane's all-time favorite shows). That is a piece of trivia that I bet even Shane didn’t know.
Take care everyone!!
Wednesday, August 29, 2007 I had a feeling if I didn't say anything about today, things would mysteriously start falling off of walls or shelves around here (If any of you know about KoKo, you have to agree, ha, ha). I've said it so many times before, and I have to say it again, KoKo was so much more to Shane than just a stuffed animal. He was his security, comfort, and conscience with a voice for all, when Shane was 8. And he grew to be such a source of humor and relaxation (what a good pillow) as Shane grew older. He was given to me for Shane on the first day of school in 1994 by Shane's 2nd grade teacher. It was a couple of weeks after Shane had been diagnosed, and he was still in Ann Arbor from his tumor resection surgery. I had come back home for Adam's first day of Kindergarten, and Kayla's first day in 2nd grade. What an emotional day that was. Like the pictures above show, KoKo became a VERY important member of our family. And the pictures below show that he became a very important part of Shane's life, and fight with cancer.
Happy Birthday, KoKo, I really do miss you!!
Tuesday, August 28, 2007
It's our little girl's birthday today, YAAAYYYY!!! Where would this house be without the humor and mood swings (Shane made me say that), she has brought us over the years (ha, ha). Shane and her definitely had their moments, and butted heads more than once, but boy did they have their share of fun also. I can imagine a lot of things that Shane would say about her now, especially watching her interact with her dog (that is never a dull moment).
I'll update more over the weekend. I have a feeling it is going to be a long one.
Saturday, July 28, 2007
Today is one of those special days that Shane should be here for. His good friend and three year locker partner (what a brave girl) is getting married today. They met when they were freshman in band (Stacy had transferred from another school). They became good friends, and Stacy was always a constant in his life from then on. The two together were sometimes more like an old married couple then they were good friends. Shane would come home from school and tell many 'Stacy' stories, especially about how she broke various bones on her body over the years. My favorite though is about her putting his books on the top shelf of their locker one time (he couldn't reach the top shelf - ha, ha) when he had done something to her first. I can just see him trying to jump up to reach them. When Shane would miss a few days of school and Stacy knew that it wasn't for chemo, tests, or anything else planned ahead, she would call to find out how he was and if anything was wrong ........ They spent a couple of New Years Eve's together. Shane always looked forward to going to Stacy's house to eat on that night. One of my favorite pictures of Shane is with Stacy on New Years Eve of 2002 (??) (top right corner). It was one that they took themselves, after MANY tries according to Shane. Stacy then gave that picture to him to put in a Scooby Doo (his favorite) picture frame that she had bought him. The frame had a picture of Scooby, and the words "Good Buddy, 'Ol Pal" on it. That picture and frame was definitely something that we put with Shane so that he would have it forever. In September of 2004 when Shane came down with that nasty virus, Stacy was away at Big Rapids going to school at Ferris. Even though the worst was over and we knew that Shane was going to make it, Stacy insisted on coming down to see him. Her poor dad drove the 2 hours to Ferris from Bay City, then the 3 hours from Ferris to Ann Arbor. Then he had to do it all again in reverse a few hours later. What a long day they both had. The last picture of Shane and Stacy taken together is the one in the bottom, left corner. I think it was taken at the end of October after Shane had gotten home from the hospital and had officially withdrawn from CMU. I remember Stacy's very last visit with Shane very well. It was the day after Thanksgiving. I had taken Shane to the hospital in Midland for a transfusion and we had planned on Stacy and Sean (Shane's best friend from grade school) coming over when we got home. On that day though Mother Nature let loose with maybe the biggest snow storm that we had that winter. What should have been a 20 minute drive home ended up being an almost 2 hour drive. They were still able to come over, and Shane was able to visit with them for a little while. It was the very last day that he was really able to carry on a conversation with anyone. He left us 4 days later. I am so grateful that he was able to spend that bit of quality time with them. I'm sure if Shane were here today he would have all sorts of advice for Josh (ha, ha). AND if Shane were here today and Stacy knew that he wanted to give Josh advice, she probably wouldn't let him anywhere near Josh (ha, ha).
Wednesday, July 4, 2007 0:48 AM CDT
Where do I begin?????? The month of May is just a blur. It was a blur even when we were still in the month. There’s so much going on at the end of the school year. With Adam being a senior this year there was a little more added on to the already normal stuff. This time of year definitely gets me thinking about Shane more than usual. This was his time to shine. He made it to graduation. He was feeling well the day of commencements and was able to go without any problems (that was one of my big worries back then, that he wouldn’t feel well enough to go, and enjoy himself). He was feeling well, and quite the social butterfly for his graduation party (he did pay dearly the next day though with pain), and he was thinking about going away to college. Adam’s graduation brought back so many memories of 2004. I could picture Shane right in the chair that he sat in during the ceremony. I could picture him walking/hobbling up to get his diploma. I could picture him grinning from ear to ear the whole way. And I could picture everyone standing up once he got his diploma in his hand. The week leading up to his graduation party was a funny one (I can say that now). There was so much to do around here to get ready for it. At that time, deep down I knew where this was all headed. We invited everyone. Current friends, old friends, every teacher that Shane had ever had, nurses, doctors …… I was thinking that it was going to be a good-bye party for most, as much as it was his graduation party. It was almost like a send off party for him, and he definitely deserved it. I know I wrote about this back then, but getting ready for Adam’s party made me think of it again. We were all (Well, almost all. Shane was sitting on his perch watching T.V., and talking on his laptop) running around here doing yard work and cleaning the house the week before the party. Things were getting a little stressed at times (ha, ha). We did manage to have some fun though and Shane and I video taped Kayla hauling the shop vac way out to the shed after much complaining from her about it being too heavy, and that she was a “GIRL” (What was that suppose to mean? ha, ha). Once she got it out there she did the Rocky dance on the way back to the house. Shane just rolled his eyes, shook his head and laughed. The one day while I was in the front yard working in a flower garden and Shane came out and asked me if he could do anything to help. I first felt his forehead to see if he had a fever (ha, ha). He said, “Very Funny!” I then gave him the simple job of going out to the shed and bringing up a rake for me. He left to go do it, but was gone for a really long time. After awhile I went to the back of the house to see if I could see him, and there he was, standing at the shed door, still trying to get it open. He yelled that the door was locked, but I knew that it wasn’t. I walked out there and turned the knob, it opened. It was just a little hard to open. That was it for him, he was exhausted from fighting with the door knob (ha, ha) so he went back in the house to his perch (boy did we give him a hard time about that for awhile). Adam’s graduation ceremony went really well. It was a nice day outside, which made it not too hot inside. I’ve gone to graduation every year since 1999 when Randy’s niece graduated. For 2000 it was his niece’s boyfriend. The next 3 years I went to watch Shane play with the band, plus I knew kids that were graduating also. 2004 was Shane’s. 2005 was Kayla’s. Last year we went for Kayla’s friend, and this year was for Adam. All those years and it never rained during, or after the ceremony. This was the last year that I’ll be going. There were so many kids that graduated this year that I worked with in school over the years and that were friends of Adam’s. It’s was a nice year to end with. We had Adam’s graduation party the day after graduation (what was I thinking). Everything came together, but not without our little moments of stress. I was so glad when it was over. We could just enjoy going to everyone else’s after that. All of Adam’s friends that I would run into, I would tell them to stay clear of their moms, or just nod yes and smile the hour before their parties were to begin. That is such a crazy time for moms (ha, ha).
Well we did it, and it was as hard as I thought it would be. We traded in the Trail Blazer. It was a 2003, and it had over 93,000 miles on it. 84,000 miles were on it already when Shane died. The summer of 2004 was when we pretty much lived in Ann Arbor (and wracked up most of those miles). During chemo weeks we would go to clinic 5 days, then on our off weeks of chemo we would go at least 3 days for transfusions. He had said back then that we should have our zip code changed to 48109 because we were there more than we were in Bay City. I knew when it came right down to saying good-bye to the Trail Blazer it was going to be hard. It took everything in me not to cry the day we sat at the dealership and made it a done deal. At least after that part I had a few days to prepare for the final good-bye. I had wanted to drive to Ann Arbor with it one more time just to have those memories again, but I didn’t want to take a chance of the piece of molding that was just put back on (don’t get me going on that one) blowing off again and doing any damage to it. (That piece had broken off twice before, but it would never completely fall off (you have to unscrew it) because the high brake light was attached to it and the wire to that was attached inside the car. For months I had the brake light just dangling in the back of the car. It almost looked like a disco ball at night when I would step on the brake and that thing would be lit up and spinning around in the back). Anyway, last Wednesday when the new car was suppose to come in, in the morning I got into the Trail Blazer (yes, I’ve lost my mind), I drove to McDonald’s and got a sausage biscuit (like Shane and I always use to). Then I went to the Meijers gas station for some gas and a bottle of pop (like Shane and I always use to). And then I got on the freeway for a little drive. I couldn’t drive to Ann Arbor, but I drove to the Zillwaukee Bridge, pulled off on top near where you can see that church (yes, again), and just sat there and thought for a little bit. I had taken the cd’s that we use to listen to on our trips, and was playing them along the way. I could still picture Shane sitting right there in the back seat on the passengers side, and that’s the feeling that I was looking for. I came back home by way of the cemetery. As I’m pulling into the cemetery an older song started playing on the cd that I had forgotten about. It was one that I had thought about somehow playing at Shane’s funeral. It’s called Remember Me This Way, by Jordon Hill . Boy did the tears start to come then. As the song went on though, and I really started listening to the words, I realized that Shane IS everywhere to me, and I really DO believe that he’ll never leave me. I just have to keep believing. Getting rid of that car just makes it seem like I’ve lost another little piece of him. When I got home from my little journey, I got the movie camera out and took it inside the Trail Blazer so I could record all of those little messages that Kayla had put on there for Shane to listen to on our trips to Ann Arbor. He would get back inside of the car after a long day in clinic, not feeling too well, or when we would be stuck in road construction on the freeway, and not at our happiest, and I would start playing those crazy messages and they would always make him smile. After recording them I was going to erase them. And then I thought, No, let someone else hear them and think that the previous owners were really pretty crazy (ha, ha). I'll always have that image of Shane in the pictures up above, with him sitting in the back seat on the passenger side, headphones and sunglasses on. My new car………. Gets around 40 miles per gallon – YES! Better than the 12 mpg we were getting with the Trail Blazer.
Things here are slowing down just a little, and only for a little while. Our graduation parties to go to are getting towards the end (I haven’t had to cook on a weekend since school got out – YEAH!). Adam is working at S.C. Johnson for the summer. He’s working 12 hour shifts, 3 days on, 3 days off, then 3 nights on……. he’s doing pretty good with it so far. He has decided to go to Alma in the fall. If he’s going to go away, I’m glad that it’s there. It’s only about 50 minutes from here. Going with him to his orientation a week ago made me think of Shane a lot. I wish Shane could have had the college experience a little longer, and while feeling a little better. Adam is going to try to play football in the fall so he has to go to camp there on August 19th, and then school starts for him the week after that. I’m sure that will be coming up quicker than we think. His last season playing high school baseball flew by. On the weekends they played in a lot of tournaments (2 of them in Grand Rapids and 1 down in Detroit). As a team they had a great time this year. As parents, we had a great time this year. It’s sad to think that it’s all over. They ended the season around 26 W – 14 L. I made up a power point about the seniors on the team. Their moms each gave me pictures of them to use when they were little and either playing baseball, or with baseball props. I added pictures of them playing ball from this year. It ended up being 33 slides long with over 100 pictures, PLUS, I figured out how to add music to it (one of the songs being “My Wish”). Shane would be so proud of me and my computer skills (ha, ha – mostly learned by trial and error)……. Kayla is still working part time with her young girl that is Autistic. I met her last week, she’s a cutie. She’s looking for another part time job to go with her current one for some extra money. She’s signed up for classes in the fall, and then I think she’s done there. She has to decide by then what she’s going to major in, and where she’s going to go to get it. We don’t ask her too much, she gets kind of stressed out when we do (ha, ha). She’s still our source of humor around here. Her and her/my dog (I’ve taken over guardianship – ha, ha).
That’s all for now from around here. We went to the big fireworks tonight. You can’t go there without thinking of Shane for sure. There was a little boy in our area that was not liking the fireworks at all. He made me think of Shane in his younger years when he would cry so hard when they started that his hair would turn blonde (from his face being so red), and I would have to take him and leave. Thank goodness he got over that after a few years…….. I hope everyone is enjoying their summer. I for one am VERY grateful that it has cooled off a little (I don’t handle the heat very well – a little ?itchy). I’m kind of looking forward to winter already (ha, ha).
Take care everyone, stay safe, and healthy!!
Saturday, April 28, 2007 Well, Kayla didn't get to do what she wanted to at the cemetery on Thursday. So she came up with a plan "B". Plan "A" was for her to have a friend buy some kind of alcohol and she was then going to take it out to the cemetery and either set it out there (that wouldn't have been too good), or water the grass with it maybe??? I'm not quite sure what she was going to do with it exactly. When she couldn't get ahold of the friend, she went to plan "B". She took her dog out there. As she was walking out the door with him she said she was going to have him pee on Shane. Poor Shane. I guess she couldn't get him to pee in his area, but she said he went over to my dad's spot and got him instead. I can picture Shane shaking his head from side to side like he use to when she use to do crazy things.
Someone posted this on the Neuroblastomoa ACOR that I belong to (a site where parents, relatives and friends of children (and a few adults, young and old) who have NB post questions, ideas, experiences, encouragement, frustrations .....), and I wanted to share it with all of you. Not many people can actually make dreams come true for others. This dream though, for a young 7 year old boy named Shane (who is fighting relapsed ALL (leukemia)), is so reachable for him if we all just give a little effort, and pass the word around. His story is here Shane's Wish If you can't follow the link, all he is asking is for birthday cards to be sent to him for his 8th birthday on May 30. He is trying to break the record.
His address in case the link doesn't work is:
P.O. Box 484
Lancaster, Ontario
KOC 1NO
Canada
~ Thank you in advance for helping this little boy's wish maybe come true.
Thursday, April 26, 2007 7:07 AM CDT
The birthdays from the pictures up above are all still so clear to me. Shane’s last birthday here was his 18th and was celebrated in clinic in Ann Arbor. It was a REALLY special day because we were starting to see signs of the ‘old ‘ Shane again. At Adam’s birthday that year Shane had just gotten home from thehospital and wasn’t able to stay awake much during day. When he was awake, he was pretty quiet. Some of the staff in Ann Arbor thought that he knew what was happening then and was showing signs of depression. I was hoping that the change in him was the effects of all the radiation that he had just gotten to his head. He just definitely was not our smiling, chatty, upbeat Shane. During a clinic visit at that time I got his folder and looked in it ( a no-no, but I had to see it). In it from our first clinic visit after he was released from being inpatient, someone had written ‘end of life care’ and then put a sad face. After that there was a comment about how he really wasn’t himself. They really did care about him down there. The week of his birthday that year he was getting chemo, still palliative. This was the week though that we started seeing more smiles, more of those facial “Shane” expressions, and we started hearing more of his one of a kind laughter. The ‘old’ Shane was coming back which made it a very special birthday. The day ended with his requested pepperoni pizza birthday cake.
Baseball has started for Adam and they are doing pretty good. It is so hard to believe that he has only a little over a month before he graduates. We were in Grand Rapids last weekend for a tournament. A crossed the street from our hotel was the Gerald Ford Museum. Guess who we missed on Friday by only a few hours?.......... George W. Bush, Jr. He was there to lay a wreath outside. Shane would have LOVED that. On the way back home on Saturday we stopped at Shane’s favorite store in Flint, “The Great Divide”. The store is split right in two. Half of it being U of M things, the other half being MSU things (Shane would never step foot on that half - ha, ha). The majority of all of his Michigan things were bought at that store. It really worked when he was younger and I needed something to bribe him with if he was going through tests or something like that down in Ann Arbor. I remember one time pretty much crawling in the MRI machine and begging him to hold still for just a little while longer while they were scanning him. Sometimes the scans would last over an hour and he had had it after 20 minutes. That store saved me more than once. We stopped this time because Shane’s friend/locker partner’s wedding shower was on Sunday and I wanted to get her something U of M’ish to put with her other gift. Something that she could put out in her yard, and maybe think of Shane when she sees it. I found a nice rock with a carved out block ‘M’. Not a typical shower gift, but Shane wasn’t really a typical kid either.
Kayla’s school for the semester is over. She’s signed up for a couple of spring and summer classes this time. She got another job recently and was planning on keeping her other part time job (working with the young autistic girl). Her part time job family was willing to work around her new job so they could keep her. Her new job knew that she was currently working, but called her on Wednesday and said they wanted her to start her training on Thursday. No notice, nothing. She went there in the morning and tried to explain that she was halfway through the current work week already and that she picks up her girl from school on days that she works. Also, that the girl’s mother is paralyzed from the waist down, and that it would be unfair and unprofessional for her to change their arrangement on such short notice. Needless to say she didn’t go back there after her lunch because they wouldn’t work with her for those couple of days. It’s too bad because she would have been working at a day care with little kids. I told her that she did the right thing. She went to the shower with me on Sunday. While Stacy was opening her gifts Kayla asked me if she had to open them up there in front of everyone. I told her “Yes, that’s what showers are all about.” She then told me that she didn’t think she would ever have a shower if it meant that she had to get up in front of people like that. What am I going to do with her?
That’s all for now. Kayla has an idea of something that she wants to do out at the cemetery today for Shane. Adam and I just laughed when we heard it. I’ll have to let you know if she does it or not. I almost took off from work today to go down to Ann Arbor, but I’m down to 4 hours of personal time at work and Adam has some end of the year, “senior” things coming up that I’ll have to take off for. I think it’s a day that I’m just going to have to keep myself busy.
Take care everyone. Please keep saying prayers for all of the kids that are still fighting cancer, and for those that have recently died. There are so many. Shane has many new friends in heaven with him since his birthday last year. I am happy for him, but sad for all of their families.
Sunday, April 8, 2007
Thursday, April 5, 2007 9:32 PM CDT
It’s days like today that are bitter sweet. The first thing that came to my mind this morning is that Adam is now at the age that Shane was when he died. I thought the same thing when Kayla turned eighteen. Then the next thing I thought was, where did all of the time go. Over the years whenever the subject of Adam in his baby years came up, Shane would always tell everyone that Adam was a “fat, fat, baby”. He was (sorry Adam). His cheeks use to look like they rested on his shoulders. He was a bruiser that’s for sure. The year before Shane died he (Shane) came up with a new nickname for Adam. It was “Moose Boy”. I may have already told this story, but it came about one night when Adam went upstairs to take a shower. He was gone for a couple of minutes, and then came back downstairs to where Shane and I were. He had a look on his face that we knew something had happened. He told us that he leaning into the tub area as he was adjusting the water. His one hand was inside on the wall, the other was on the knobs. The wall that his hand was on gave out, and through the wall his hand and arm went. Shane and I looked at each other and said to him you're kidding. Then I ran upstairs to see for myself. Yep, he did it. His hand had gone through the tiles and left quite the cave in. Shane started calling him “Moose Boy” from then on. During the last week of chemo that Shane had gotten we stopped on the way home at a place that had Christmas ornaments. He wasn’t feeling too good, but he had wanted to get ornaments for his clinic nurses and the Child Life staff. While we were there he found an ornament for Kayla, and also one for Adam. Adam’s was of a moose. It will always be a special reminder for him.
The beginning of March I was in a cleaning mood. I went through things that have been shoved to the side for a long time now. We have a little walk in closet upstairs that we call the “other realm” (from the T.G.I.F. Sabrina The Witch days – Shane named it). It became pretty much a catch-all for things that we didn’t know what to do with. I got in there and got over half of it straightened and 'organized' (I hardly ever use that word in my vocabulary). Adam was cleaning in his room (that doesn’t happen very much ha, ha) also. I think Kayla was even up cleaning in her room (that one is pretty funny too). After awhile Adam came in and told me that he didn’t have any more room for his clothes. Okay, it was time. The dresser that Adam shared with Shane still had Shane’s clothes in half of it. Their closet was divided into four sections, two high for hanging, and two low for hanging (I bet you can guess who had which sections, sorry Shane). Shane’s clothes still hang in the lower sections. We emptied out two of the drawers and left one alone at the bottom for now. I can’t believe how many pairs of jeans and shorts that kid had. Since he was first diagnosed I had been saving some of Shane’s shirts. I want them to be made into a quilt someday. Because he had soooooo many shirts that were his favorites, I’m pretty sure I’ll end up with two quilts. One completely of U of M shirts (some of them are so small, but they were really his favorites), and one made of shirts that he got while on vacation somewhere (Cedar Point, Disney, Colorado...), shirts that were given to him, and shirts that I have pictures of him in. I got all those shirts sorted, and added a bunch more to them. It was a project that was long overdue. During that whole cleaning time we ended up taking down the bedroom set in Adam's room and giving it to his little cousin. It was a bunk bed loft type thing that they picked out when they were still in grade school. The top bed went one way, and the bottom went the other way, but could be rolled out from underneath altogether. Shane picked the top bunk right away, which was okay with Adam at the time. Poor Adam though ended up on the top a couple of years after they got it because it was too much for Shane to climb up and down after awhile. I thought it would be hard to see it go, but it really was the right time. I don’t think I could have done it much sooner than we did. I guess there’s just a ‘right’ time to deal with certain things.
I work in the morning at the grade school that the kids went to. A few weeks ago I ran into Shane’s fifth grade teacher. She said that her class had started on limericks (a five-line humorous poem with rhyme patterns – I had to look it up – ha, ha) that week. As she was reading some to her class that she had kept over the years she came a crossed Shane’s and read it. Then she came a crossed a boy’s that was a year or two older than Shane. And then a girl’s that was a couple of years older than that. She said she then realized that the three of them had all died and she started to get teary eyed (the boy from some sudden illness, the girl from a car accident). She said here she was in front of her class reading poems that were suppose to be funny, and she had tears in her eyes. She gave me a copy of Shane’s, here it is……
There once was a penguin named Phil.
He balanced by using his bill.
His walk was a waddle,
He tripped on a bottle,
He liked to roll down an ice hill.
Shane must have had a thing about penguins because when he was in first grade his favorite story was “Tacky the Penguin”, and in eighth grade he wrote a book about a penguin also named Phil. How funny! I went to see the movie Happy Feet when it came out and thought a lot about Shane. I know if he were still here he would have gone to see it (really).
I know that there is probably more to write about that I’ve missed. I’ll have to jot it down for the next time. Kayla and Adam are doing good. Adam has narrowed his college choices down to two. Baseball season officially starts next week. I hope it warms up by then. A couple of weeks ago he was in the St. Patrick’s Day Parade with the king and queens court from school.
It was the first time since Shane’s junior year that the band had marched in the parade. It brought back a lot of good memories of that last year when he was the drum major. He was so whipped out at the end of the route. It had been an above average weather day (in the high 70’s) that day, and he had walked backwards and directed the majority of the three miles, but he was so excited to be able to do it at all. I was just relieved when it was over…… Kayla surprised us and registered at CMU (for the winter semester). She’s planning on scheduling her classes so that she can commute (that’s scary). She’s going to do her fall semester at Delta before switching. Mind you this could all change a couple of times before it happens. She did get a job in February working with a girl that is Autistic. It’s part time, but it’s pocket money. She's learning a lot, plus it’s kind of ‘experience’ for her for what she’s thinking of going into when she’s done with school. A MAJOR accomplishment for her (this happened a while ago now) is………….. that she went through a drive thru AND ordered her food by herself (too funny). Shane would have loved how funny she was telling about it. We marked the day on the calendar. Did anyone notice her guestbook entry to me, see what I have to put up with. The last line that she wrote is from a song from one of our (Shane’s especially) favorite “Boy Meets World” episodes. We use to sing that a lot when we were driving.
I guess that’s all for now. Sorry there was so much time in between updates. There really wasn’t much happening around here. I really want to get to Ann Arbor soon. I haven’t been there to visit the hospital since school started. That’s way too long for me. The next thing that I have to prepare myself for is the selling of the Trail Blazer. I think that is not going to be an easy thing for me to do. There are so many memories in that vehicle. I know it is something that has to be done though since the price of gas is so high and when I checked my mileage last it was only getting 11 mpg. All I know is that when we were driving back and forth to Ann Arbor I could get there, back home, and there again on one tank of gas. That was good enough for me (ha, ha).
I know looking outside today, and at the forecast for the next few days, it doesn’t really look like spring, but it’s coming, really.
Take care everyone!!
Saturday, March 17, 2007 HAPPY ST. PATRICK'S DAY !!!
Saturday, January 27, 2007 9:33 PM CST
This time of year is always a slow time for news. Let’s face it, not much happens in January. Our Christmas tree is finally down and put away. We broke it down into a three day task. And where do you think that tree is now ???????? Yes, it is…….. it’s out back on the deck, just where Shane said it should always go. He said it was a family tradition, one that was started by accident, and then was repeated over the years. We would always seem to leave our trees up a few days longer than we should (a few days plus some – ha, ha). By the time we would get around to taking it down the needles would be falling off like crazy. There were times that it was such a relief to just get it out the patio door and onto the deck with a few needles still left on it, that we just let it sit there for awhile (sometimes until spring). I think it was after Christmas of 2002 or 2003, and for some reason we had our act together that year and had the tree down before it was too dried out to become a fire starter. I think Shane overheard me tell Adam to take it out back by the fire pit. He immediately protested saying that it was like a tradition for it to sit on the deck for a few weeks (okay, maybe more). So we have adopted, or will continue, that “Shane Tradition,” and our tree is now laying proudly out back on the deck.
When Shane was 8 and diagnosed back in 1994, he had just made his 1st Communion in the spring of that year, and had started being an altar boy at church right after that. We were very attached to our priest at church at that time. The kids liked him, and I truly looked forward to every Sunday and going to church. I think I got a lot of strength from Fr. Vern back then. I think Shane did too. When Shane’s hair fell out for the first time he didn’t want to be an altar boy anymore. He figured it was church, hats weren’t allowed, and he wasn’t ready to show off that bald head yet to everyone. Fr. Vern took him aside and talked with him. He told him he had no problem with Shane wearing his hat while he served. He also told him that he knew of some men that went to church and wore a hair piece, and that he considered those hats too (which made Shane laugh). He then told Shane that guys with bald heads were good looking (mind you Fr. Vern was bald at the time). Shane ended up staying an altar boy and only wearing his hat a couple of times before getting rid of it for good (back then it was a black one with his name spelled a crossed the front in bright teal). Shane soon decided that bald was beautiful. On the way out of church every Sunday Fr. Vern would bend way down, grab Shane’s head, and rub his bald head on Shane’s, telling Shane that he was doing it for good luck. Fr. Vern retired the summer of Shane’s first bone marrow transplant and moved way up north. Our friend Chelsea had just died, I was worried about complications that could start after just getting home from transplant (which is kind of what happened to Chelsea), and then we had to say good-bye to Fr. Vern, all within a few weeks of each other. What a time. The kids and I ended up being his sort of groupies for awhile. We would find out what church he would be subbing at (after he retired), and then go there. We traveled around quite a bit for awhile. I took the kids up to his house on the water a few times. They would have a blast playing on the beach, and swimming, and I would have a nice visit.
Fr. Vern had a stroke awhile ago. Every once in awhile he needs to come into town and get admitted for some rehab work to help him build his strength. He is very determined to be able to stay up north on his own. He is in town right now getting some much needed attention. I was able to go and visit him last week. It has been three long years since I saw him (it doesn’t seem that long really). It was again, as usual, a very special visit. One that I have needed for a long time.
Right after New Years Shane’s friend Stacy (the brave girl that shared a locker with him for 3 years), came over to visit. We did a lot of catching up. Before she left she gave me a gift. I don’t know if you remember this, but after Shane had to stop going to CMU and moved back home, he started taping every “Boy Meets World” show that would come on during the day. His big plan was to get as many as he could (he managed to tape a couple Sunday marathons of the show, plus a lot of the daily shows) on tape for Stacy for Christmas. They both loved the show. Shane, I’m sure, had seen them all more than once and knew most of the lines. I use to tease him about being an “Eric Mathews wannabe” back when he had his hair real long. Around the first Christmas that fell a few weeks after Shane had died, I took all the tapes over to Stacy and told her where they came from, and why. This Christmas time, she brought them back to me, all on DVD. There are hours of them. I love it, and am so looking forward to watching them!! That was one of the shows that could get Shane laughing, even on a bad day.
Last week I wrote to someone who recently lost her son and told her that there is “no” timeline to the “when” you should do, or feel, things after someone in your life dies. Everyone has their own time, and way of dealing with it all. I managed to take a big step forward recently. Last weekend Randy and Adam went to the U.P. to go snowmobiling. It was a good time for me, with the house to myself, to go through things in that ‘special’ corner in the living room where Shane had spent his last few weeks, and then died. There were still two boxes of medical supplies (I know, I know), and some things that hospice had brought over. I think I told before that right after he died I had tried to find a place to take all of the supplies, but no one would take them, or offer any ideas where I could take them. Back then I just couldn’t throw that stuff away. It had been a part of our lives for so long. It had to sit there, all boxed up, with his letter jacket, his U of M stocking hat, and a couple of U of M ball caps, sitting on top of it all, until it was ‘my’ time. The boxes are now gone, but they are sort of replaced with three Rubbermaid bins full of pictures (one for each of the kids). Going through pictures is a project that I have wanted to get started on also for awhile. I haven’t taken too big of a step forward though, because his letter jacket and hats are now laying on top of those bins (baby steps)…. I talked to Shane’s good friend from Child Life (Ann Arbor), Sheila, last week. It was nice to talk to her and see how everyone is doing down there. I really miss them. I wasn’t able to get there at Christmas time this year. It’s hard to get there when I get out of school so late in the afternoon. Soon though, I’m going to figure something out…… Kayla has started her winter semester at school and everything is good so far. She got laid off from her Hallmark job, but is looking for another job. Hopefully she’ll find something soon….. Adam is on his last weeks of working (he was just seasonal). He’ll be happy about that. The world of working wasn’t/isn’t something that he seems too excited about. He’s still not sure what he’s going to do next year for school. He’s kind of still looking around and checking into different ones. Training for baseball has started for him. He’s looking forward to this season.
A couple of days ago I got a card in the mail. It was from Shane’s English (speech) teacher at CMU. She wrote a little note in it saying how Shane had popped into her head that night, and she took it as a sign. She is now married, and recently had a baby girl. That being a new parent gives her a new appreciation for the deep, unwavering love that a parent as for their children. She went on to say the Shane had impacted her life, and that she was blessed to have had the opportunity to know him, even for how brief a time it was. What a special card. What a special guy.
With all of the snow that we finally have (I LOVE IT !!!), it made me think of Shane and how much fun I would have had with him if he were still here this year. Every year (starting about when he was 10) right after school would start, and we would be making one of our trips down the freeway to Ann Arbor, Shane would always start singing “Jingle Bells” (it was like once school started he thought the next big thing was Christmas). I remember him even trying to do it the first trip we made from CMU in late August in 2004. He knew Christmas songs got to me after awhile, especially when they would start playing them around Halloween. After a lot years of letting him do it, and him poking fun at me all the while, I made a bargain with him (well, couple of bargains). The first one was that he couldn’t start singing the song until the first snowfall. He agreed, but I soon realized that this is Michigan and you can have the first snowfall in the beginning of October. I then changed the bargain and told him that he couldn’t sing the song unless the snow fell, and then stuck to the ground. Boy would he have been complaining this year about the lack of snow on the ground this winter.
That is all of the news from here. I hope everyone is staying warm. I had to turn our heat up to 64 (ha, ha) a couple of times over the holidays because we were having company over. I told Kayla and Adam that we would have to turn it off completely on those nights after our company left to make up for it (just kidding). Keep remembering……… Spring is coming!!!
Tuesday, January 2, 2007 Maybe we'll show them next year (ha, ha).
Monday, January 1, 2007
(Okay, I know that it is Happy New Year, not Years, (picture up above) but it would have taken me too long to go back and fix it. Next year.)
It’s hard for me to believe that two complete years have gone by without Shane being with us. He may not be here physically, but he is definitely with me many times during my days. I hope that feeling stays with me during 2007. I can’t say that I am sorry to see 2006 be gone. It was a year of funerals for me. Two aunts, a cousin, an uncle, and a special friend all died last year. Some were expected, some were a complete surprise. Let’s not forget all of the special kids that lost their lives to cancer last year also, far too many. Shane has such great company in heaven. It truly must be a beautiful place.
I’m sure you know where we will all be at 5:00 today. Parked right in front of the T.V. watching the Rose Bowl game. U of M has got to pull this one off big time to show that they should have been the ones to play Ohio State next week. I can just hear Shane’s mouth a going had he been here when they announced the teams for the different bowl games. He definitely would have been saying that we were robbed. We’ll show them…… GO BLUE !!
Please keep saying prayers for all of the kids that are in the fight for their lives. Please keep praying that 2007 is the year that something will be found to help them.
Happy New Year to everyone!
Monday, December 25, 2006 0:09 AM
December is almost over. Believe me when I say that I am counting down the hours. Since Shane was diagnosed the month of December has always been hard. My dad had died the week before Christmas when Shane was only 4. I had finally been able to get past that, and then Shane’s diagnosis came along. It’s like every December the feeling of “will this be the last,” was so much stronger then than any other time of the year (the last time…tree hunting, putting the tree up together, Christmas day, spending a year together, New Years Eve…..). Even though I don’t have to worry about that anymore, the memories from the past still seem very fresh at times. Christmas day, and all of the other holidays, are easier for me once they are actually here. It’s the days leading up to them that can be hard. I have funny memories of old Christmas’ that help me push the sad feelings away. I use to make the kids (I still make them) sit upstairs on the landing and wait until everything downstairs was all set (gifts, cameras….). They were like little kids at times, calling down every 2 seconds to see if they could come down. In 2002 I had gotten Shane his letter jacket. It didn’t come in time, so I called a boy that was a couple of grades ahead of Shane and asked if I could borrow his. He was in band and on the swim team, and those were also the two things that I had put on Shane’s coat. I just wanted to be able to wrap it up and let Shane open it. When he got it out he was excited and was looking it over. Then he stopped and asked why “Casey’s” name was on the coat. He thought it was funny when I told him what had happened. The next year I special ordered a Joey Kocur Red Wings jersey for him. Again, it didn’t come in on time so I took his other Red Wings jersey, wrote “Kocur” and #26 on two pieces of paper, and duct taped them both in their appropriate spots (I’m always thinking – ha, ha). He opened it, shook his head and laughed at me. The picture up above in the slide show that says, "This was a gift of a Christmas", Shane had started having bad symptoms the first of December that year. We were told that he probably wouldn't live to see Christmas. When things turned around and he started feeling so much better the week before Christams, I took advantage of the gift of having him with us and the ole' camera was clicking like mad that year. I think the pictures of 2002 and 2003 are my favorites (There are so many more from every year that I didn't put on here).
Picking out our Christmas tree this year was a breeze. Between everyone’s schedule around here, and none of us being in a big rush to get one, we’ve only had it up for about a week. Instead of driving 15 miles to the place that we usually go to, Kayla, Adam, and I decided that we just wanted to go locally and get anything that we saw (Charlie Brown trees are the best I think). We got our tree and were home within 15 – 20 minutes. Randy didn’t even get out of the truck when we stopped because there were only 5 trees sitting out and he said that we wouldn’t get any of them. We showed him (ha, ha). It’s probably one of the better tress that we’ve had in awhile. Tall, and fat.
Kayla is on her break from school right now. I know she is happy about that. There’s a little issue about her final exam and grade in her one class (the class that I didn’t really care too much for the teacher). He posted her grade, but he won’t give her her test score yet. Things don’t add up right so she’s waiting to hear back from him. She is so glad that that class is over. Winter semester starts on the 6th so she has a little time off before she has to go back. She’s still working at Hallmark, but I’m sure she’ll be getting less hours now that Christmas is over………. Adam, well back before Thanksgiving he got a job. Yup, he did. The funny thing is, is that when he went for orientation he couldn’t find his Soc Sec card. He took a copy of our income tax form from last year and his ACT entrance paper, both showing his number. They said they had to have the actual card and that he couldn’t be put on the schedule until he brought it in. He ended up going to the Social Security office and filling out papers to get a new one. The store he got the job at accepted the temporary one and put him on the schedule finally (the week after Thanksgiving). Their schedule mostly consists of “call ins”. Adam has been scheduled to “call in” at least once or twice a week. He never had to go in any of those times because they didn’t need the extra help. Yesterday, on the 23rd of December, was his first day of officially working. YAAAYYY!!!! Poor guy though, he worked 4 1/2 hours and had to come home and sleep for awhile (ha, ha). On Thursday night this past week was his guy/girl pom pon routine at half time of the varsity basketball game. They did really good again. It’s hard to watch all of them though when you’re trying to tape. Someday I’ll figure out how to put something like that on here.
We had Christmas last night at my moms, and then we’ll have it again today at my mother-in-laws after church. I know Shane will be right there with us all the way…… Please will you say some prayers for all of the families that are facing their first Christmas without someone in their family, especially the families of children. Also, please will you say some prayers for the kids (and their families) that have recently found out that their cancer is progressing. Some of them are so young. They need that chance to be able to grow up like other kids.
Thank you for checking in on us……………. MERRY CHRISTMAS!! Enjoy this time with your families, make memories, and capture those Kodak moments!!
Thursday, November 30, 2006 6:09 AM CST I have started this over so many times (and I’m still not happy with it)…… What can I say about today. I know that I have reached a place where most of the time I can make myself ‘not’ think of that day 2 years ago. To even write “2 years ago” seems so unreal. For me, it truly does not seem that long ago that Shane was here with us. I am so glad for all of the Kodak moments we captured over the years. Seeing a picture always takes me back to a place and time when Shane was still with us. When I put the Thanksgiving picture up on the last entry, it was so hard for me to believe that it was taken in 2002. It seems like it was only last year that he was wearing that crazy hat. Those are the times that I like. They always make him seem not too far away. The times for me that I still find sometimes hard are….. the days leading up to the holidays. The holidays themselves seem to be okay once they are here right now …. The first, and last, days of school. Those were always such an important, and fun, time for him …. Driving south on the freeway at times.... Passing the Fenton exit and seeing our ice cream place (I still have to stop)….Grocery shopping can be such a killer. I remember all of the things that Shane would eat and have cravings for. They weren’t always healthy foods (heck, none of them were healthy foods, ha, ha). Back then if he would eat a bag of popcorn and a bag of fruit gushers, I was happy. I still have times where out of no where the tears start. That darn song, “God Bless the USA”, always stops me in my tracks when I hear it. They played that song at the laser show at Cedar Point every year that we went. The one year we were sitting on the ground with hundreds of people around us and Shane tapped me on my arm and said, “listen to all of the people singing.” That song always takes me back to Cedar Point. Another thing that I have a hard time with is that something that can make me smile one time (a song, picture, memory…), can make the tears start falling the next time. There’s still no rhyme or reason to it. Church, well for some reason it was easier going the first year than it was the second year. I have to keep remembering …..”One day at a time.”
Thursday, November 23, 2006
I can’t have this whole entry be too down (that would be so ‘not’ Shane), so I'll give a little update from around here. A couple of weeks after football season was over we had one more ‘final’ tailgate for just the seniors and their families out in our shed. We laughed and said that the parents were going through withdrawals and we should keep getting together at least once a year. Adam had a great season. He was one of the players in our area (it’s a big area) to make the Dream Team. He also made First Team All Conference, AND he was voted Most Inspirational by the guys on his own team (he’s quite the cheerleader. Oh…… he should be doing his pom pon routine at the basketball game in a couple of weeks. I really think he missed his calling (ha, ha)). Shane would be loving all of it if he were here. He was such a football fan, and I remember him just laughing and shaking his head during the pep assembly when he was a senior and Adam was a freshman, and Adam got out in front of the whole school and danced (He does a very good worm).
Something else that Shane definitely would have laughed about was Kayla and I going shopping the Friday morning after Thanksgiving. WHAT WERE WE THINKING???? We got to Saginaw and were in line (for a TV for Kayla for Christmas) at 4:05 in the a.m. (I know, I know). At 5 the doors opened. We found the TV (only 4 of them were there). Our first cart was too small (you should have seen the size of the box). Our second cart was okay, but her and I couldn’t lift it (she’s all girl). A nice elderly man helped me get it on top of our cart. We paid for it, took it out to the parking lot and…… Uh Oh… it doesn’t fit into Kayla’s car. You should have seen us out there (Randy and Adam took my Trail Blazer to Detroit for 2 days). Sooooooooo, we took it back into the store and asked if we could leave it there for a few hours until we could go back to Bay City and get the truck. Before going back for the TV we stopped at 3 other stores (having to park about a mile away from each, so Kayla says). When we got into those stores and saw the lines, we turned around and left (can you tell that we’re not good at this?). We were back at home, in bed, with the TV by 10:00 a.m.. For years I worked at KB Toys. I LOVED working the day after Thanksgiving. It was always fun to watch people. After this years shopping experience (it was my first), I’ve decided it’s much more funner (poor English, I know) to be on the side of the counter taking the money, then on the other side giving the money.
The month of November did seem to go by quickly like I hoped. I purposely stayed busy and I know that helped. One more month to get through before my mind can calm down some. Yes, I have to say that with time things get better, or easier. Maybe it just comes down to the fact that you have to live with what has happened, and there is nothing that you can do that will change that. So now, am I going to become an emotional wreck and stay stuck on November 30, 2004, or am I going to do what I know with all of my heart Shane would want us to do, and keep going forward and live our lives with him in mind? I choose the 2nd choice (with bumps in the way at times). I hope I'll never forget the feeling of sitting on the floor next to his bed and holding his hand all night long the night before he died, but I know that I also have so many more memories that Shane would rather I remember. That is what I plan to do.
Thank you still, and always, to everyone. Over the years you have been our rock, our distraction, and our little push at times when we’ve needed it. Shane was, and we are, so lucky to have you in our lives.
Shane and KoKo ~ I love you guys, and I miss you guys, but I know that you’re always really still here with us. Not a day goes by that I don't think of you.
How can I not still be very "thankful" for the 18 great years that we had with Shane. There are so many families that have had so much less time with their children. My heart goes out to all of them, especially at this time of year. The turkey hat that Shane is wearing in the pictures above was a special handmade gift from Devyn (Child Life at the hospital). It was a bet gone bad (I don't remember what it was about), and so Shane was suppose to wear the hat on Thanksgiving Day that year (It still sits up on his desk). Of course he did. He loved stuff like that. Those pictures are the "Shane" that I will always remember on Thanksgiving.
Enjoy, and treasure, the time you have with your families today, and everyday.
Sunday, November 18, 2006
WHAT A GAME !!!..... The ending could have definitely been better. I had planned to clean the house while the game was on, but instead I just kept sitting on the couch watching the whole thing.
I have to go clean my house now (ha, ha).
Friday, November 17, 2006 , 11:50 PM
I never could have imagined at this time last year, the special company that Shane will be having tomorrow up in heaven while watching the 2nd biggest game that he always looked forward to (U of M vs. MSU would definitely be his 1st biggest game). Since Christi died I had this image in my head of the two of them each cheering for their team (Christi's being the Buckeyes of course), on this special game day. Today when I heard that Bo Schembechler had died, I immediately thought of Shane, and then pictured the two of them (Shane and Bo) watching the big game together tomorrow. I bet Shane was right there waiting for Bo in heaven today, ready to talk football. (Click on the link below, ha, ha. Shane was definitely helping out with this one.)
B L U E ! !
Tuesday, November 7, 2006 9:27 PM CST
It seems like I just get done updating, and then another month flies by……. On the 21st of October I went to Ann Arbor and met three of Shane’s nurses, Kim, Karrie (sp?? – help me Shane), and Diane. We went to the U of M vs. Iowa game. All the years that I’ve been going to those games I had never gone to a late (3:30 p.m.) game before. Shane always told me that the Big House didn’t have any lights for night games. He thought that it was probably because it would take away from the “look” of the stadium (Does anyone remember the halo that went around the stadium for awhile before enough alumni complained about the “look” and it was taken down? Shane and I always liked it.). I guess I never paid attention to the light thing when we would go. Knowing that this game was going to take us into dusk, if not almost dark, I was curious about what they would do. Sure enough, coming up Main St. next to the stadium I saw these huge portable lights on wheels that would fold up into place when they needed them. Shane was right, as usual (ha, ha). We had a lot of fun. From walking through the woods from Kim’s mom’s house through the parking lot and the 100’s of cars, trucks, RV’s…. (at $30 a vehicle)at the high school, to sitting through the whole game (it definitely was a good one), it was a great day. I won’t mention who didn’t know anything about football and got a quick lesson during the game, or who actually wore Iowa’s colors instead of U of M’s, or who dropped chocolate from her ice cream bar on the seat in front of us, and then laughed when the guy in front of us sat in it…….. Shane was definitely shaking his head and laughing at all of us that day. The days leading to the game here were cold and rainy. The morning of the game it was pouring here and they were calling for rain in Ann Arbor starting in the afternoon. I stopped and bought a rain coat to take so I would just be cold, but not cold and soaked. I figured by half time (after the band played of course), that we would be ready to leave. When I got to the high school to park (a tradition of Shane’s (that place is so huge)), it was still raining and I was wondering if someone was going to have to push me out of my spot when the game was over. The ground there was a mess. As I was walking to meet Kim at her mom’s house it was still raining. We started walking to the stadium early so we would have time to shop at all the vendors that we would pass (of course). I had taken a camera, so when we entered the stadium we asked the ticket people if they would take our picture. It was funny. Someone said we probably looked like tourists. By the time we sat down the rain had stopped and the sun started to peek through the clouds. I took a picture of it because at home we hadn’t seen the sun in days. The guy behind me said I was taking it as proof that it was actually there. It then came out completely and through the rest of the game it was clear blue skies (THANK YOU, SHANE!!). Everyone was over dressed then. It started getting pretty warm after awhile and you could see people taking layers off. We’re never satisfied are we? We had a really good time and decided that we should get together for a game every year, for Shane. Thanks guys, I loved every minute of it!!
Football here is over. It didn’t end well either. Between not playing their best, to the luck of the draw, the guys ended 6-3 this year. The killer for me was losing to the team a crossed town. Adam’s group had never lost to them before. That was just a night of on-going errors. Now that football is over (he's a senior, so this is for good, sniff, sniff) he’s already getting started for baseball. I’m glad he likes to be active in things. It helps to keep him out of trouble I think. Last week I ran into the mother of an old grade school friend of his (Teal), that died a couple of weeks after they finished 4th grade. I hadn’t seen her for a long time and we talked for a while. She said that she had seen Adam at the mall recently, which made her wonder what her son would look like now. I went home and told Adam about our conversation. The next day Adam called me while I was at the store and said that he had just found out that another friend of his from grade school, Eric, who was also a senior (time, and no classes together recently had put some distance between them), had just taken his life. Wow, that just got my mind going in all directions. Remembering 4th grade and Teal, thinking of how Adam and Eric use to get together and run around outside in the woods and watch movies together…., it wasn’t a good week. Then of course I had to write “November” for the first time. It’s like starting a count down to something that I really don’t want to count down to…..I hope the kids at school can work through this.
I forgot to tell what Kayla did the last time I wrote…… She came home with a puppy. Yep, not something that I ever wanted to have happen in my life again (We had a Golden Retriever that I thought was going to out-live us all. (Shane is really grinning about that right now)). Anyhow, she came home with this little puppy that isn’t suppose to get any bigger than what it is now. It was touch and go for a little while. I can’t repeat the words that Randy said when he found out about it (after her hiding it in her bedroom for 2 days). He’s a member of the family now though. It’s a good thing that he’s small. Kayla is back working at Hallmark. Her babysitting job was good for her through the summer and she saved up a lot of money. I think she even has more than me in the bank right now. School for her is going ‘okay’. She really dislikes one of her teachers, but we won’t get going on that one (He raises everyone’s test grades by a grade because the class always does bad, hmmmm, something’s not right there don’t you think?). She’s already signed up for her winter classes. I think she finally ran out of classes that she can take in town, instead of having to drive out to the college. Remember last year she took everything in town because the college scared her (ha, ha).
On this election day I remember Shane’s excitement of being able to vote for the first time. To think that he was able to do that only 3 weeks before he died is amazing to me. He voted absentee because the election fell during his week of chemo (the last one that he ever got), and we never knew how he would be feeling on those days. He definitely didn't want to take a chance of not feeling well enough to stand in line. His LOVE for the Bush family was so cute. I had gotten online and ordered him a hat, T-shirt, pins, bumper stickers.... he loved it, and proudly wore them. I wonder what he would be thinking of all the “goings on” in the world today. Believe me, if he were here he would be letting us know. Ever since he was young (first grade was when it started with George Bush, Sr. losing to Clinton (not a good morning around here when Shane found out))it was like living with a little politician during election time. I really miss that (Shane is shaking his head "no" right now). I am hoping that the month of November flies by as fast as September and October did. I told a friend recently that I am trying to keep very busy for just that reason. Either that, or that I’m hoping that I’ll be too tired to let it bother me as much.
Take care everyone. Enjoy our little Indian Summer that we’re having right now.
Wednesday, October 11, 2006 No King here, but an 'almost' King. Adam got 1st runner up last night ~ YAAAAAAYYYY Adam!!!!!!!!! The BIG game is tonight. We're playing a team that hasn't lost a game in a few years. Help us Shane!!
Wednesday, October 11, 2006
The plane that crashed into the building in New York is about one block from the Ronald McDonald House (which is on 73rd St, in between York and 1st Avenue), and only about 4-5 blocks from the hospital (on York and 67th St.). I recognized the building because of how the top was. How scary for everyone....... The final count is in from our "Wear jeans on our 'non-jean' Friday" fundraiser......$587.05 for Alex's Lemonade Stand..... Yay Bangor Twp. Schools!!
Saturday, October 7, 2006 9:46 PM CDT
You didn’t think I could let today go by without doing an update did you?? What a special time of year this day always was. Flags hanging outside, food in the house, yelling at the T.V……. it will always be a day to remember. In the slide show below, the picture with the “funny story” caption is of Shane before we went to a game in Ann Arbor. One game Shane wanted the "M" tattoo on his bald head. I let him, but I was worried about it not washing off. He forgot his hat that day, but he wanted everyone to see the “M” on his head anyhow. That was one of my ‘bad mom’ days because a child with cancer, with no hair, out without hat for 4 hours in the hot sun….. not a good thing. Anyhow…… his head got burned bad. On Sunday before we went to church I put a wet wash cloth on his head to see if the tattoo would come off. It came off really easy, but what was left on his head made me laugh so hard……. a bright white “M” (from everything around the tattoo being burned). That white “M” stayed on his head for weeks. The best part for me of going to a football game there is watching the band run out of the tunnel, marching down the field while playing their fight song, and then the cake (?? help me Shane), that they make when the whole band forms a huge circle with the flag flying out of the middle. The "M" flag was in a couple of his senior pictures and is the flag that covered the end of his casket. We folded it up and sent it with him (he would have been mad if we hadn't) at his funeral.
I’m sure Shane enjoyed the game this year!! Not long after my last entry I went down to Ann Arbor for a visit. It was a short one because school had already started and I didn’t get there until almost 5:00, but it was still a nice one. I love sitting with Shane’s nurses and visiting. It kind of feels like ‘home’ at times. On the way there and back I noticed all of the new buildings that have gone up since Shane died. There is a huge shopping plaza that is really coming along just south of 96. Of course if Shane were here he would never let me stop (ha, ha). I have some really exciting news! In 2 weeks I am meeting three of Shane’s nurses from 7 West and we are going to a football game at the Big House. That will be so much fun. I am really looking forward to it. I can see Shane getting a kick out of it too. Shane and I went to at least one game a year after he was diagnosed. I can't see stopping that tradition (we know how he LOVED his traditions).
Where did September go? It’s hard to believe that we’ve already been in school for four weeks. Adam is on an every-other day schedule. On days that he has Advance Chem he starts at 7:00, on his off day from Chem he doesn’t start until 9:15 (those are the days he wakes up smiling). My time this year is split between two grade schools. I am with 2nd graders for two hours in the morning at the same school I was at last year (Shane, Kayla, and Adam’s old school, and, in their 2nd grade classroom and with their teacher). The rest of the day I go to a different grade school and work with a little girl there. She has seizures, so she needs someone with her while she is at school. My first week with her I wasn’t sure if it was going to be something that I could get use to. I feel so bad for her at times. I am doing better with the whole thing now. When I think about it, it’s sad to think that maybe I can get use to being with her when she has her seizures. It’s just not something that should be happening at all. Kayla is doing okay with her schedule. Her geography class is a challenge at times. She had to map out the 12 realms of the world on this map a little while ago. The map that she was to use was pretty small and the print wasn’t very clear. I tried to help her with some of the congested parts, but my eyes aren’t the best anymore. While we were looking at it and trying to figure it out we agreed that this would be a class that Shane would have loved. He obviously wasn’t sending us any heavenly vibes that night because she still got a few wrong (oops).
On September 16th I received an email from Christi’s mom, Angela. For the ‘Subject’ it read….”Shane….. we need you to welcome Christi home, please”. How sad. Christi reminded me so much of Shane. Their minds were like sponges just absorbing everything that they ever saw, or heard. Shane was our walking telephone book, homework helper, computer technician, mobile ESPN, you name it, we always asked him first. It sounds like Christi was the same for her family. Up until that email I really thought that this was one of those times that Christi would pull through again and prove those doctors wrong. Just like Shane had done himself so many times. Three days after I got the email, Christi died. I know Shane was there waiting for her (He’s got some real competition now). I had every intention of going down to Ohio for her funeral. My clothes were ready, my map was printed, the car had a full tank of gas, but Adam’s football game the night before had a 1 1/2 hour rain delay and we didn’t get home until close to midnight. I had a rough week that week because Christi, Shayne, Angela and Shayla were so much on my mind, I missed out on a lot of sleep. When the alarm went off at 5 that morning, I knew that I wouldn’t be able to make the trip. I ended up going back to sleep for awhile and then going into work (my secretary job). That was a long morning. I kept looking at the clock and thinking about what Christi’s family would be doing at that time. A song came on the radio that when I heard it the first time awhile ago it made me think of Shane a lot. On that Saturday it made me think of Shane, and Christi. I believe that they are both up in heaven singing this song for all of their family and friends.
I hope that days come easy and moments pass slow,
and each road leads you where you want to go,
and if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
if it's cold outside, show the world the warmth of your smile,
More then anything, more then anything,
My wish, for you, is that this life becomes all that you want it,
to your dreams stay big, and your worries stay small,
You never need to carry more then you can hold,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
all the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
and you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
and you always give more then you take.
Oh More then anything, Yeah, and more then anything,
My wish, for you, is that this life becomes all that you want it,
to your dreams stay big, and your worries stay small,
You never need to carry more then you can hold,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I love that song!! ~ MY WISH ~ Please keep sending prayers to Christi’s family. I know there is such a void in their life now. They need a lot of strength……..On this BIG game day for U of M and Michigan State, a couple of things have made me think of Christi and her family a lot. In our school district we (staff) have a new dress code this year which only allows us to wear jeans on ‘payday’ Fridays. When I figured out on the calendar last week that yesterday didn’t fall on a ‘jeans’ day, I panicked. How can we get in the spirit of the “BIG” game, and not be able to wear jeans? I asked our new Superintendent for permission to ‘ask’ everyone in the district for a $1.00 donation (or more if they wanted), and for that donation they would be able to wear jeans for the day. The money raised would be donated to the “Alex’s Lemonade Stand” organization in honor of four kids from our township (Shane, Erica, Kyle, and Mark), whose lives were/are affected by cancer. I was given the okay. I don’t have a definite total yet, but I know that our small district raised at least $500. Not bad for only asking for $1.00 per person. This week down in Ohio, Christi was honored on a college campus for many things. One being her lemonade stands that she held there. The next thing that made me think of Christi and her family today is that instead of Adam being home watching the BIG game, he was in Ohio at the Ohio State game (Shane would be itching like mad just thinking about it – ha, ha). It was an opportunity that he couldn’t pass up. He was able to go down on the field before the game, and take a good look around the campus while he was there.
Speaking of Adam………. my baby was nominated for Kings Court a couple of weeks ago. YYAAAAYYY!!! Homecoming week is this week. What a fun time. Last Sunday the two courts met at a park in town for pictures. A few moms tagged along (yes, I was one of them), so we could get some of our own pictures. They were having a good time. Probably too good of a time if you asked the 'real' photographer (ha, ha) that was trying to take their pictures. Four of the boys on the court with Adam have been together with him since Kindergarten. They're not little guys anymore. Thursday night we’ll find out who the King will be. Kayla and I have already told him that he’s only ‘King’ of unloading the dishwasher around here (he doesn’t seem to be able to do that anymore either ~ smile). It’s sad to think that he is down to his final football games. Time sure has flown. They won their conference again, but we have a really hard game coming up on Friday night. It will be homecoming night so hopefully they will have a lot of adrenaline and spirit built up for it.
The month of September I will always remember as the 'month of driving' that Shane and I did (This year I didn't focus on his getting the virus at the end of the month in 04, and all the bad that went with that. Small steps forward). Sometimes driving everyday of the week. Sometimes only 3 days out of the week. From CMU (Mt. Pleasant), through East Lansing, very near MSU (whenever we would start getting close to that city Shane would tell me to hurry up and get through there because he was starting to itch), across to U.S. 23 (we would always say that we were home when we got on that stretch of the trip), and finally to Ann Arbor. A 180 mile trip for me one way, and I would remind him that it was only a 134 mile trip for him. I can't imagine driving all those miles now with gas at the price that it is. Those trips were mostly done quietly (with a little road rage at times) because Shane would be in the back passenger seat with his headphones on listening to music while he did homework, or sleeping. He never complained, and most of the time he enjoyed it. If I wanted to say something to him I had to wave my hand around to get his attention. And you guys thought that he was such a sweetie (smile). Enjoy these cool weeks before the real cold sets in.
GO BLUE !!!! ………. and GO BOBCATS !!!!
Tuesday, August 29, 2006 Twelve years ago today the last member of our family entered into our lives. It was the first day of school. Adam was starting Kindergarten. Kayla was starting 2nd. And Shane would have been starting 3rd, but he was still in the hospital from his surgery to remove his tumor. When I went to talk to Kayla's teacher that morning (who was Shane's teacher the year before), I was given a large bag to give to Shane when I went back to Ann Arbor. In it was a big, black, ball of fur monkey named KoKo. I can't imagine all those years of Shane being treated for his cancer without KoKo with us. What a source of comfort for Shane when he was younger. A definite source of entertainment for Shane and all of us when he was older. And the best pillow to rest our heads on (sometimes even when I was tired and driving on the freeway either to, or from Ann Arbor, I would use him to prop my chin up, ha, ha). The story of Shane, KoKo, and some of the funny highlights of his time with us are in the Journal History under September 4th (last year).....HAPPY BIRTHDAY KoKo!! The house sure is quiet without you.
Monday, August 28, 2006
It's my little girl's birthday. A year of driving, college (today is her first day back and she wasn't happy about starting school on her birthday, ha, ha), working, boyfriend, her big vacation...... she's been busy. Shane use to tell so many "Kayla" stories when we would go down to Ann Arbor. He would always tell them that "if Kayla wasn't happy, no one in the house was happy". It wasn't that bad really, but it was fun to watch him tell some of his stories about her.....HAPPY BIRTHDAY KAYLA, you've come a looonnngggg way!!
Monday, August 14, 2006
Wow, I think that this was the longest that I have ever gone without doing an update. Shane is definitely shaking his head at me up in heaven. This is going to be an entry with visuals.....I would like to be able to tell you that during my time away I got caught up on all the things that I wanted to do this summer before school starts. The word “like” is the key word in that sentence to focus on. I’ve been getting some things done that I wanted to do. It maybe even safe to say that I put a ‘dent’ in my list of things to do, but I definitely didn’t get everything done that I wanted. With school only a couple of weeks away (I go back on the 29th, 30th and 31st. The kids go back on 5th), it doesn’t look like my list will get done. Oh well, I know it will all still be here next summer (ha, ha). I did get a few things done that I really wanted to though. I sent most of the pictures out that I had found while going through a couple of boxes. I think I ended up mailing about 20 envelopes out. I also came a crossed a ‘Will’ that Shane had written when he was in the 11th grade. The funny story behind the Will is that Shane was sharing a locker with his good friend Stacy (they lockered together for 3 years)….. (This is Shane’s version of the story)…. During passing time before the class that they also shared together that year (poor Mr. Benner), Shane was at the locker getting his things and he closed the door right as Stacy was reaching in to get her books. He swore that he didn’t see her coming. He then said that Stacy started threatening him so he ran (yeah right, ha, ha) to class and started writing his Will. His teacher that hour use to laugh at those two in class. When he had jotted down what he could in the short time that he had before Stacy got there (he had made her late then), he had his teacher sign it as a witness to his signature (too funny) to make it legal. I had found the Will in the winter and was going to do something with it then, but then I lost it. I found it again when I started going through things. Here is a copy of it….
Last week I honored some of Shane’s wishes. For each of them I gave a letter explaining the story behind the Will, and a copy of the Will also......I gave Mr. Miller (Math teacher) Shane's program discs that he had made up when he was in Mr. Miller’s class (I didn’t have a clue what they meant when I brought them up on the computer). I also gave him a couple of Shane’s U of M things. One of my favorite pictures of Shane was taken with Mr. Miller and Ms. G. (his middle school history teacher), outside of the BIG HOUSE before a game that we went to....Mr. Denay (Spanish teacher) got the U of M jersey that Shane special ordered when he was a sophomore or junior. Mr. Denay had a son, Joe, that was on the football team at U of M back then and Shane loved to see him down on the field when we would go to our yearly game. He got Joe’s number on the jersey, but because of NCAA rules he couldn’t get his last name, first name, initials, or anything like that on it. Shane decided to put “Mini Jefe” on the back. The “Mini” stood for him (short – ha, ha), and the “Jefe” means ‘Boss’ in spanish (That was Mr. Denay’s name in class). When it finally got delivered Shane LOVED it and wore it a lot. Mr. Denay didn’t get the “Kocur Jersey”, oops (another one of Shane’s favorites), we decided to keep that one (I hope that Will isn’t really considered legal – smile)......For Mr. Clyde (History teacher – Shane’s FAVORITE subject), I couldn’t give him ‘all’ of his Michigan things, that would have taken a small moving van, but I gave him some of Shane’s favorites......Poor Mr. Benner (Geography class – Shane’s other FAVORITE class), I haven’t come a crossed the box that has all of his history things in it yet. I know it’s around here somewhere. We had it all packed away when we re-did their bedroom and Shane just never got those things out again after it was done. That will be one of those things that I’ll have to get done before school starts. Oh, if you’re wondering….. Sarah didn’t get the computer, Mrs. Stoddard didn’t get his saxophones (I think she’ll understand), we took most of the Play Station games to the hospital last year (Shane would have liked that), and Shane’s whistle went with him (I’m sure he’s directing something in heaven). After seeing that Will again, I realized that having Mr. Miller, Mr. Benner, and Mr. Denay as three of Shane’s Paul Bearers was a very good idea. Shane loved them……. The funny end to the story that prompted him to write the Will is that after class when Shane went back to his locker, Stacy had put all of his books and things up on the top shelf. She knew that he couldn’t reach that high. I do believe that Stacy may have said that that part of the story didn’t happen (ha, ha, - this was Shane’s version of the story mind you). Speaking of Stacy (I hope this is okay Stacy), not too long after school got out this year Stacy received a VERY sparkly ring from a certain special guy. I do believe that there may be a special day coming up for them sometime next summer. Yay Stacy!!! Can you imagine all that Shane would have to say about this?
A few weeks ago I took Adam in to get his senior pictures taken. They turned out great, it was hard to choose. While I was there I thought about how the last time I was there was with Kayla, and Shane was still with us. Then I thought about being there with Shane, and how we had to scramble to get everything together quickly and move his appointment up because his hair had decided to start falling out in gobs 2 weeks before his original appointment was to happen. He had been on the same chemo for over a year then and never had any hair loss. All of a sudden it was falling out like you wouldn’t believe. The outdoor pictures were a little hard because there was a breeze and it would blow a piece of hair over and show a bald spot. I was running up there in between pictures to move it over and cover the spots. What a day that was. Not too long after Adam’s senior pictures were taken, really, it was the day before football practice was suppose to start and it had been in the 90’s with no sign of a break, Adam decided to get his hair cut – I told you this was going to happen……he got his mohawk.
That hair cut lasted about 2 days (long enough to be interviewed by a local T.V. station about their upcoming season (oops), and to go to church, lucky me, Samantha, and her sister). He shaved it all off now and is pretty much bald. At least his head will be cool.
Kayla and Mitch took off at the end of July to go down to Shreveport, Louisiana, to see Mitch’s sister who was having a baby. Mind you, these are 2 pre-adults that got lost going to the Palace of Auburn Hills for a concert earlier this year. How was I supposed to believe that they were going to find their way to Louisiana without ending up in California or someplace else? She had an Atlas, I had an Atlas. We ran off the directions from the internet and highlighted their route through every state. I wanted an Atlas here in case she called me saying that she was here, instead of there (I know Shane was loving every minute of this). They left early on a Saturday morning. By noon I had such a headache (I found out later in the day that my blood pressure was soaring. I wonder what brought that on, ha, ha). She was calling every few hours to let me know where they were. By early afternoon I figured they were going to be all right so I relaxed a little. They ended up getting there late Sunday afternoon and stayed the week. She called me before they left to come home and said that they were going up to Witchita, KA, to see Mitch’s mom on the way back. I told her that she couldn’t because that’s not how we had it mapped out on the Atlas for her trip home (ha, ha). They ended up printing more directions off the internet down there for their return trip (There went my blood pressure again). She called me a couple of hours after they left and she’s yelling into the phone that they’re in Dallas, and the traffic is horrible. I said, “Yeah you’re in Dallas, stop kidding.” I was wrong, they were in Dallas. The directions they printed took them right through the top of Dallas. What an adventure they had. Kayla said she only told Mitch she hated him once on the way down, and twice on the way back. Poor guy, I can’t imagine being stuck in a car with her for so long (ha, ha). She’s such a driving critic sometimes, and she’s not always the most patient person (Shane’s is nodding yes). Last week I went with her out to Delta to help her figure out what she wants to be when she grows up (ha, ha). Last year she said a Speech Pathologist (with kids). This year she has changed it to a Child Life Specialist (or a Recreational Therapist, both with kids again. At least she knows she wants to work with kids). I know that she would be good at both. She loves working with kids and she’s good with them. I think of how much the special Child Life people meant to Shane over the years and I’m glad that she wants to do this, but then I think of all the kids that those special Child Life people have gotten to know, and had to say good-bye to over the years, and I hope that she knows what she is getting into. We’ll see.
Okay, this is ending up being a small novel. I guess that’s what happens when you wait too long to update. We passed through a couple of things again without Shane. Our family/golf reunion was a couple of weeks ago. Shane would always golf with my brother, Jim, as his partner, and then they would team up with Randy and Adam. Shane and Jim’s goal was to always be in last place. I don’t think that they had to try too hard to get that title. Jim made up shirts for them one year (2003).
The front says, “Tradition since 1998” (when they started golfing together). The back says, “We suck, and we’re proud of it.” They always had a good time…… This weekend was the Relay for Life here. Every year Shane would be down there with the Student Senate from John Glenn. He love being a part of it, and he liked walking around seeing the different luminaries that people had made for him. It was definitely easier for me to go down there this year than it was last year. They lost a few teams this year compared to last. I hope that people aren’t losing interest. I saw little Emily there. She’s the little girl that was diagnosed with Leukemia the last year we were going to Ann Arbor. She recognized Shane in clinic down there one day while he was getting his chemo, because she use to go to the football games at our high school and she saw Shane directing the band. Boy does she look good. She is currently in remission and only has to go back to Ann Arbor for 6 week check ups now. YAAAYYYY EMILY!!!!!! This was Adam’s 2nd year being a part of the Relay for Life.
Friday, August, 18th, will be the 12th anniversary of Shane’s tumor being found while we were on vacation in Ohio. I know that I have told before how on every year on August 18th I would tell Shane ‘Happy Anniversary’ when I would first see him in the morning (Oh, that’s right, he slept until noon). I don’t think a lot of people understood why at the time. But I would tell them that every anniversary after being diagnosed with cancer that you can celebrate….. is a ‘Happy’ Anniversary. I think that Shane knew that too because he would always get a kick out of it…… One more important thing. Not too long after my last entry I found out that one of Shane’s classmates from high school, that also graduated in 2004, was diagnosed with cancer. It’s just never ending isn’t it? I sent a letter to their family to let them know that I was thinking of them. To tell them a little of how Shane handled his battle. To give them some of Shane’s own special “cancer fighting tips” (his 2 most important were “do what you have to do and don’t fight it, and to always try find a reason to smile, if not laugh), and to offer any support that I could. I received a nice letter back from ‘mom’ letting me know how he was doing so far (he’s going to Mayo for his doctor, but is able to get some of his chemo here). Please keep them in your thoughts and prayers. Another young person that shouldn’t be going through this………I guess that’s all for now (about time, huh?). The only other news that I can think of is that I found out last week that I will be back to full time when school starts. YAY!! What is also good is that I will be at the same grade school that I was at last year (Shane, Kayla, and Adam’s old school), again in the morning, and then I go to a different grade school for the afternoon. I definitely am happy about that. I am planning on going to Ann Arbor in the next couple of weeks before school starts. It’s hard to believe, but I haven’t been there in over six months. I can’t tell you how many times I’ve wanted to just get on the freeway and take a drive there. I really miss that place and the people so much sometimes. We are going on almost 2 years since Shane has been gone. Some days it just really doesn’t seem that long ago that he was here. I am so grateful for that feeling…….Well, I am going to end it here (really). Enjoy the final days of summer. Has anyone noticed that it’s starting to get darker out a little earlier already?? AHHHHH!!!
Take care everyone!!
Friday, June 30, 2006 10:58 PM CDT Our graduation parties to go to are over already. I guess I’ll have to start cooking on the weekends again (darn!). A couple of weekends ago I went down to Troy (‘somewhere’ in Detroit) for a “graduation/10 year cancer free” party for Brittany (our last little (now all grown up) friend from diagnosis time). Donna, (Chelsea’s mom), and Helen (Emily’s mom) were there also. It was really nice to see Donna again. I haven’t seen her since Shane’s funeral. We talked and laughed about so many things that happened back then…….Chelsea only wanting to take her medicine with a certain drink and Donna going to every floor, every vending machine to find it. Shane and Chelsea watching the Lion King together, then rewinding it and watching it again, and again, AND AGAIN the week we shared a room together…….. It was a real nice day. In the spring when Vicky (Brittany’s mom) called, she had told me about a car that Brittany had bought with some money from her grandpa. It was an old 66’ Mustang that they were going to fix up in time for Brittany to take to prom. When they realized that it wasn’t going to be done in time Vicky approached a TV station down there and told them Brittany’s story and asked for help. Help she got, and just before prom she was given back her car completely redone. Brittany knew about the car being restored, but there was a surprise for her on the trunk of the car. Her mom had asked us other moms (poor English I know) if she could have a picture of our kids painted on the trunk as sort of a memorial to Brittany’s angels. Welllllllllll……. would Shane want to miss the chance to have his picture painted on the trunk of a restored 66’ Mustang….. I don’t think so. We got to see it while we were there, it turned out really nice. I think he would love it, and I can definitely picture him telling everyone that he ran into about it. Here’s the link to the article that was in the paper, and here are a couple of pictures.
Brittany is all grown up, but she has so many problems from all of the chemo (transplant) that she had when she was younger. It’s an on-going battle I’m afraid, and I think she’s going to have to keep battling and staying strong. She’s amazing!
Adam had football camp this week over at CMU. Randy went also to help out at the campground, where they stayed, with the cooking and the monitoring of the boys. I heard a few boys are sporting some Mohawks now ~ willingly. Adam would have definitely gotten one himself, but he is getting his senior pictures taken in a couple of weeks (he knows his mom would have hurt him if he had ~ smile). After his pictures are done I’m sure he’ll be getting one also. He’s wanted one for awhile now. I think that it’s a “boy/sport” thing at their school. If Shane were here this week I’m sure he would have been telling Randy and Adam to check out this, and that, and to make sure they go here, and there, while they were in Mt. Pleasant. He’s still never far away in my thoughts. While the guys were gone I got to sit down and get a few things done that I had literally put in a box for holding until I had time to do them. I have 100’s and 100’s of pictures that I’ve taken over the years and have never done anything with except to get them out and look at from time to time. I started sorting them out by who was in them (lots of pictures of my kids’ friends from years ago), and then giving them out to their parents. I’ve gone through quite a few, but I have soooooo many left to go through. I came a crossed a group of pictures from when Shane went to Camp Mak A Dream (that’s spelled right) in MO with Devyn and a bunch of kids from U of M (Motts) back in 2001. There was a girl from Bay City that also went that year (small world) that was the same age of Shane (I think there may have been a small crush there on Shane’s part). I remembered her first name, but Devyn and I couldn’t remember her last name, and I had a bunch of pictures from camp that I wanted to send her. Well being the pack rat that he was, Shane kept all of the little notes and papers from that week in a mail bag that they made at camp (I found it a little while ago). In that bag was the name and addresses for all of the kids and counselors that were there. I made copies of some of the pictures and then sent all of them to Jennifer with a little note. One more thing done that I wanted to do. I have a few more special errands to do for Shane. As I get them done I’ll let you know.
I want to tell you a little about our 4th of July’s from the past. When Shane was little, Kindergartenish and before (and probably after), he would talk, talk, talk, about going to see the fireworks. We had friends from West Branch that would come down with their kids for the 4th. We would go with them, and meet others downtown and make a night of it before the big show. For I don’t know how many years in a row, Shane would do fine before the fireworks began. He would run around, play, have a great time. When the fireworks would start he would sit still at first, then start to squirm, then cry, then scream. Sometimes it was pretty funny. He would get going so bad that his hair actually would look blonde because his face was so red from crying. I would end up getting him and taking him to the car, or there was a restaurant in town that would be open that we could go and sit in until the show was over. The one year I remember even trying to have him wear these big headphones so the noise wasn’t so loud for him. It didn’t work. It took him quite a few years to grow out of it. Our fireworks here have gotten so huge since way back then. He ended up really loving to go to them. Me, being the mom that I am, knew that they were important to him and the day that he got out of the hospital from his 1st transplant I took him down to watch them. Chelsea had died that morning (he didn’t know), and I just wanted to do something that he would like. Never mind the fact that he wasn’t suppose to be in large crowds for 100 days (Oops, he laughed because I told him just to not let anyone spit on him – ha, ha). We went faithfully every year after that. In 2003 it was harder for him to get around, even though he wouldn’t tell you so. I think Randy had taken Kayla and Adam early that year to get our spot reserved with his family, and then my mother dropped Shane and I off about 15 minutes before the fireworks were to start. That worked out good for him, not too much time sitting in one spot. In 2004 he didn’t get to go because he was due for his chemo then and that was always a bad time for him (one of the very few times that I was unhappy at the hospital for having to put his chemo off a day because of the holiday). Last year when I went I thought a lot about Shane while I was watching them. From the days of screaming by the time the second fireworks went off, to listening to him say “Have a nice day” every time they shot off the smiley face one…….they’re all good memories now.
I hope that everyone is enjoying their summer. Make the most of every day!!
Thanks for checking in!!
Tuesday, June 13, 2006 11:54 PM CDT
I have a feeling that this isn’t going to be one of my normal entries……. The normal part ~ the school year ended really nice. The teacher that I was with this year, and I, worked on a little yearbook for all of the little kindergarteners in our class. I think we ended up with a little over 150 pictures altogether. That’s a lot of cropping and fitting into ten pages. It turned out really cute, but because of printers in our room and school not cooperating (I ended up running to my afternoon job and printing them there and then running back to school), we worked right up until the minute they were lining up for the bus the day we passed them out, getting them collated, put in folders, and fastened. Why coundn't we have just waited one more day???.....You can't tell kindergarteners that on a Wednesday they will be getting a "special" surprise to take home, and then remind them of it daily leading up to that day, and then tell them on that actual day, oops, maybe you can take it home on Thursday instead (it would have been funny to hear their comments though). What a day!! The last day of school ended up being a little teary-eyed for me for a couple of reasons. Just the fact that we had to say good-bye (you know I hate those), and because our teacher was giving this nice little farewell / keep practicing what you have learned / be safe…..uh oh, that was the one. I couldn’t hold my tears anymore, plus one of our little boys was crying by then (he was so cute). The “be safe” comment brought on a “flashback” that I haven't had in awhile. The summer after Adam had finished 4th grade a friend of his named Teal died. It was a couple of weeks after school had ended and we had just gone to the picnic celebrating the end of that baseball season. Teal was there also and all the boys had fun that night running around and getting their awards. The next morning I went to work at summer school and found out that Teal had died later in the night after he had gone home, an accidental hanging. When I got home from school I had to tell Adam. The first thing he said through his tears was that the last thing his teacher had told them as they said their final good-byes that year was “to be safe.” What a memory.
Kayla and I went to graduation on Saturday. I think I’ve gone every year since 1999. Back then it was Randy’s niece that was graduating. The next year was his niece's boyfriend, and then the years after that leading up to Shane’s graduation I went because he was playing in the band and I just had to be there to see him. Last year was Kayla’s, and this year we went for Shane’s old ‘special’ friend, and Kayla’s friend, Sarah. Wouldn’t you know, the one song that the band played that the seniors went and joined them for was “Fate of the Gods”. Most of you have probably never heard it, but it is such a nice piece. It’s also the piece that Shane's band played at one of the other graduations, also a spring concert, and that Shane had the solo in. It was nice hearing it, and it made me think of Shane a lot (with a smile). Graduation time also makes me think of two years ago at Shane’s. The excitement of him actually being able to graduate, and the excitement of him actually feeling well enough to go and enjoy it. I don’t think I’ll ever forget that feeling of them calling his name, watching that 4’ 9 1/2" (he always reminded us of that 1/2 inch) young man going up there to get his diploma, and the applause that he got the whole time he was walking up. Such a happy time.
This is where the ‘not normal for me’ part of my entry starts…… I usually stay away from saying anything about religion or beliefs when I write. This time I'm not. Since my dad died in 1990 I have gone to church every Sunday without missing (unless we were out of town (not very often), or if Shane was in the hospital (I would go to mass at the hospital once in awhile, and in New York I found the best little church by the Ronald McDonald House). In the spring of 1994 the topic for the Lenten Season was something like ‘Thanking God for what you have and doing something to show it’, or ‘Being grateful for what you have and doing something to show it’. I remember our priest at that time focusing one mass on being grateful for our health, and the health of our family. At that time I had 3 very healthy children (I thought), full of energy, full of smarts, and I was so grateful for that. My way of showing it was to give a blood sample and sign up to be a bone marrow donor. I had watched a movie back then about a teenage girl that had leukemia. Her mom, being older, had another baby hoping the baby’s bone marrow would be a match to save her sister because no one in their family that had been tested was a match. The baby's was a match, and it did save her sister. I wanted to be able to help someone like that also if I could. What a gift to be able to give someone......How so incredibly ironic is it that 6 months later Randy, Kayla, and Adam would be getting tested (mine was already on file), to see if they would be a match for Shane. None of us matched him. Kayla and Adam matched each other almost perfectly, which always prompted a smart comment from Shane whenever that topic came up. Anyhow, we kept going to church every Sunday. Shane had started being an Altar Boy that summer. After he was diagnosed he kept serving, hat and all, then later he dumped the hat. Back then he had a strong faith and would take a rosary that was given to him as a gift and hold it during mass. He loved being an Alter Boy and would jump up and run back if ever someone didn’t show up that was suppose to. He definitely had his favorite songs that he loved to sing every Sunday, and he couldn’t hold back his excitement when he would look up all the numbers that were listed at the alter, and find one of his favorites being up there for that mass. Kayla and Adam would see one up there before him, and then watch him and laugh as he found out. He would always start to elbow us with a smile on his face and let us know when there was going to be good songs being sung that week. For his funeral we HAD to pick "Jerusalem My Destiny" as the final song. That was the one that he got the most excited about when he would see that we were going to sing it. The last couple of years that Shane was with us his desire to go to church just wasn't there. I’m not sure if it was because mornings were not always the easiest for him, because he was a teenager and that’s just how they are, or because he was starting to question it all, and who could blame him. For the last 10 1/2 years of Shane’s life I looked forward to, and loved going to church every Sunday. I had so much to be thankful for. “Thank you for another week”, Thank you for Shane feeling good”, Thank you for Shane’s pain not being too bad”, “Thank you sooooo much for chemo tomorrow”……. I would be on my knees forever going through my list of things to be thankful for. Every week I would always end with the same thing, “Please just give us another week.” Prayers at night were always identical. Thanking, thanking, thanking, and then asking for one or two things for Shane, then I would always fall asleep. When Shane died, I struggled with thinking of anything that I should be thankful for other than "Thank you for having Shane for 18 years", and "Thank you for him not suffering horribly." I would ask/pray for help for other kids that I knew that were in the fight for their lives, but one by one they started leaving also, and it all just gets so discouraging. For the last 17 months I find myself just wandering into church, sitting there, and then wandering out when it is over. I still want and like to be there, it’s just so different. This week I think my faith has really been shaken, or shattered, again. I started following a sweet little boy (his site has had over 2 1/2 million visits), Jacob, over a year ago. This little guy was diagnosed with a type of cancer that adults are usually diagnosed with, back in 2004. He has one older brother, and then his other two brothers and he are triplets. It seems like everything that could have gone wrong with every treatment that Jacob ever had, did. Yet through it all this little guy smiled, and smiled, and kept fighting (You have to go to his site and see all of the pictures. They are so precious.). His brothers started kindergarten without him last fall because he was in the hospital with major problems. They went the majority of the school year, and ended the school year without him with them because he was in the hospital again. They celebrated their 6th birthday a couple of weeks ago without him being able to celebrate with them because he was in the hospital, and now they will spend everyday from now on without him (physically) because he became an angel Sunday night. His mother always ends her journal entries with a scripture writing or a devotional. I can’t tell you how many times I’ve read what she’s written, thought about what Jacob, his mother, and the rest of their family were going through, and then tell myself to STOP FEELING SORRY FOR MYSELF! Really, how many of us think at times that we have it so bad, that our life can't get much worse? I need to keep remembering the lessons that Shane taught me..... I remember the day that Shane died, whispering to him that it was time for him to rest, and that it was time for him to go to heaven, be free, and see all of his friends. I then told him that when I got there (keep your fingers crossed), that his was the first face that I better see. That he better give me a hug right away without my asking. And that he then should get the h#!! out of my way because I had questions that I wanted answers to. A couple being......just exactly WHO is in charge of the picking, and HOW, are children/adults chosen for this? Is it something so simple as it being the "luck" of the draw (as a doctor said to me one time (not meaning anything bad by it))? Is it because the child/adult that are chosen are believed to be strong enough to handle everything that goes with fighting a fight like this, or that they are "special" enough to teach everyone around them some life long lesson along the way? WHAT IS THE REASON !!!...........I really just now thought of something else that I am grateful for.....I truly believe with all of my heart that Shane now has all of the answers to all of his questions (those about his cancer and why him, and even all of his silly questions - like why the Detroit Lions ever hired Bobby Ross, why Steve Fisher still couldn't have stayed with U of M ~ smile), and I truly believe that he is happy/content with those answers (well, maybe not the Lions and U of M ones - can you imagine him up there debating those with someone that's in charge?).
Not the normal entry is it? I keep telling myself that it’s just another phase. Hopefully it’s a quick one. I’m going to end this with a verse that is on Jacob’s site today, it’s also part of what was read at Shane’s funeral. I remember when we were planning the church service and I saw this, I knew it was what had to be read.
"I have fought the good fight. I have finished the race. I have kept the faith. Now there is a crown waiting for me. It is given to those who are right with God. The Lord, who judges fairly, will give it to me on the day he returns. He will not give it only to me. He will also give it to all those who are longing for him to return."
Thank you for still checking in.
Saturday, May 27, 2006 8:01 PM CDT Wow, I had another entry all typed out, but after I read it I thought that Shane wouldn’t be too happy with it, so I deleted it. I’ll try again…….(If I can’t write ‘nothin’ that’s not a downer, then I won’t write ‘nothin’ at all ~ (words from Thumper, just changed a little))
Another school year is coming to an end. We have 8 1/2 days left. I am going to miss the kindergarteners that I am with a lot. They are the cutest bunch, and they are sooooo good. Sure, there are always a couple (always the boys (that’s what I whisper to the girls anyhow ~ smile)). It is so hard not to smile at some of the things they say or do that really are not “appropriate” as we say in class. They have grown up so much over these last 9 months. I am already looking forward to seeing them in September when school starts again to see how much they have grown over the summer. Nothing is written in stone when it comes to my job. I guess I’m just hoping to stay in the same building. It is hard for me to grasp the fact that Adam will be starting his last year in high school in September. Sometimes it seems like it was just yesterday that he was starting kindergarten. What a time in our lives back then. Time sure does fly, don’t waste a minute of it.
The same week that it was Nurse’s Week, it was also Teacher Appreciation Week. What a special week that was when Shane, Kayla, and Adam were in grade school (and after). When Shane was in 2nd grade he had found out that his teacher’s (she gave Shane KoKo when he was diagnosed) favorite pie was raspberry. He took T.A.W. very seriously. That year he asked my mother if she would bake a raspberry pie for his teacher. She did, and he ran it (snuck) over to school (we live one house away in the back) on the Friday of that week. She was surprised when she got to school and found the pie already there waiting for her. And so it began…… the following year Kayla had her for a teacher, she got a pie from Kayla. The next year though we had a gap, Adam was only in 1st grade. Shane felt bad so he asked my mom if she would bake him another pie to surprise her with. She did, and again he snuck it over there before school started (he was then in fourth grade). The year after that Adam had her for a teacher and she got a pie from him. The year after that (Shane would have been in 6th grade) he didn’t want her to go without (we were on a 4 year roll by then) so again my mother made a pie (I’ve really got to learn how to bake – ha, ha), and Shane took it over before he went to school at the middle school. This went on for maybe two or three more years after that, I’m not really sure. I think Shane was in 9th grade the last year he took her a pie. We always talked about it though during that week every year. This year with me working at their old school again and seeing their 2nd grade teacher almost everyday, I couldn’t help but think about all the fun Shane had sneaking those pies over every year. When I ran into her on Wednesday of that week we reminisced about it. So…… when I got home I pulled a Shane and called my mom and asked her if she would bake me “one” more (we’ll see ~ smile) pie for that Friday. I guess I should have paid more attention to how he use to sneak them over because on Friday morning I didn’t get there as early as I wanted to. The kids were already coming in the building as I hurried down the hallway towards her room with the pie in my hand (I could picture Shane shaking his head at me the way he use to). As their teacher had her back to me I snuck into the room and placed the pie down on her desk. On my way out, she was coming in and I said “hello” to her as I left. A little while later she came into my kindergarten room and gave me a hug and thanked me. It was a special moment. I laughed and told her I definitely wasn’t as good as Shane was at this or I would have had the pie in a lot sooner, or at least a little bit before school started. A couple of days later I got a special “Thank You” card from her, it said…… I can always remember a little boy’s face just beaming and eyes twinkling as he “surprised” me with a raspberry pie. Thank you for allowing me the privilege and honor of being your children’s teacher. So many memories with Shane, Kayla, and Adam warm my heart. P.S. It was delicious! ……. (I really do need to learn how to bake!!) That will always be a good memory!!
I guess I’m going to end it here. I’m glad that I started it over. Will you please keep sending prayers Christi’s way. She’s trying a new treatment, and I definitely believe in the power of prayer. Also, this Memorial Day Weekend please remember all of the families that struggle to accept, cope, adapt, all of the above and much more, to the loss of someone special in their lives. There is also a new angel, Zachary Allen
Have a nice weekend everyone!!
Oh, don’t let all of the green that shows in the pictures from out at the cemetery fool you. It’s mostly weeds, and I’m still not happy about it. I’ve got to get out there and do some trimming and pulling. I haven’t decided to start from scratch again ~~ YET!!
Sunday, May 14, 2006 9:25 AM CDT This poem was left in the guestbook for me by a special friend that I have never met in person, but I have been in contact with during Shane's fight. She and Shane shared a love for U of M. Her daughter, Zoe, is currently NED (No Evidence of Disease) for Neuroblastoma. WAY TO GO ZOE!!
Dear Mr. Hallmark,
I am writing to you from heaven, and though it must appear,
A rather strange idea, I see everything from here.
I just popped in to visit, your stores to find a card,
A card of love for my mother, as this day for her is hard.
There must be some mistake I thought, every card you could imagine,
Except I could not find a card, from a child who lives in heaven.
She is still a mother too, no matter where I reside,
I had to leave, she understands, but oh the tears she’s cried.
I thought that if I wrote you, that you would come to know,
That though I live in heaven now, I still love my mother so.
She talks with me, and dreams with me; we still share laughter too,
Memories our way of speaking now, would you see what you could do?
My mother carries me in her heart, her tears she hides from sight.
She writes poems to honor me, sometimes far into the night.
She plants flowers in my garden, there my living memory dwells,
She writes to other grieving parents, trying to ease their pain as well.
So you see Mr. Hallmark, though I no longer live on earth,
I must find a way, to remind her of her wondrous worth.
She needs to be honored, and remembered too,
Just as the children of earth will also do.
Thank you Mr. Hallmark, I know you’ll do your best,
I have done all I can do; to you I’ll leave the rest.
Please find a way to tell her, how much she means to me,
Until I can do it for myself, when she joins me in eternity.
Thanks Candyce, I LOVE it!!
Saturday, May 13, 2006 7:17 PM
(May 27, 2006) Now that this is in the journal history the opening page picture that showed Shane with all of his nurses and hospital staff won't be here ~ Sorry!
(This ended up being really long)
I think that if you asked any family whose child is being treated for cancer, or any other serious illness, the majority of them will tell you that the hospital and the nurses that treat their children are the “Best”. I am here to tell you now that they are all wrong, unless of course their children are being treated at U of M / Mott’s Children’s Hospital (REALLY!! (ha, ha, all you cancer moms are shaking your heads no)). From the first morning that we got off that elevator, walked down that long hallway that has windows on both sides, walked through the area in the middle of the 7th floor that they call the “Park”, entering the hallway on 7 – West for the first time and seeing our first bald headed child (a teenage girl really, wearing a shirt that said, “I’m Too Sexy For My Hair” (which brought a much needed smile to me at the time)), we were met with nothing less than very compassionate, very knowledgeable, very sensitive to our needs, very funny (a must for Shane), very emotionally strong (a must for all that they do), nurses, doctors, and hospital staff. This being National Nurses Week had me thinking of all of them. We came in contact with sooooo many nurses over the years. Some that left after a year or two because of budget cuts (Shane wrote a letter to the President (??) of the hospital saying how upset he was about that), some that left to take other positions in the hospital, some that got married and left, some that retired, and then the faithful few (it seems), that are still there doing the wonderful work that they do. The pictures above are of only a FEW of the nurses (and Child Life staff) that took care of Shane over the years. I think it would be so amazing to see, if we had a picture of every nurse that ever treated him at one time or another.
The group picture at the top of all of them is from Christmas of 94’. There are quite a few missing from that picture (plus the two at the top that I cut their heads off, sorry). His head nurse for the night shift, Janell, (with him in the next picture over in the top, right corner) sent it to him. One Christmas, a couple of years later, Janell gave Shane a big pickle ornament. One of the things that he would always eat while in the hospital was dill pickles, or dill pickle relish straight from the jar (he always proudly said that it was the only vegetable that he ate). Shane LOVED that ornament. Janell and I would talk about how Shane slept a lot with his eyes partially open. It was creepy at times…….The second picture down is of Shane with Corinne. Corinne could always get Shane to do things while he was inpatient that he would give me a hard time about. Taking meds, taking baths (Ahhhhh!!), getting dressed before noon on his off days, eating, etc. A nice surprise for us was that when Corinne left 7 West, she went to the Cancer Center on the adult side. We could stop over and see her anytime once Shane started getting his chemo out-patient in the pediatric clinic. Once he got to 16/17ish, he was allowed to get things done on her side if the pediatric side was full. That was soooo nice. The first time Shane got an allergic reaction to a platelet transfusion, it was Corinne that was there with us. He got so red with hives, and his face blew up like a blowfish. Once we knew that his breathing wasn’t being affected, I had fun teasing him about how he looked. We all had a pretty good laugh about it at the time. The next picture over is at Shane’s “Last Chemo Party”. I think they did away with some of those parties because what was suppose to be the kids’ “Last Chemo”, didn’t end up being that after all sometimes. The nurse right next to Shane in the front is Rosalee. She started at U of M right around the time that Shane started going there. Shane always loved having her for his nurse. Beth (l) and Kim (r) I’ll talk about in a little bit. The nurse in the skirt with Shane at one of the cancer reunions (the theme that year was the 50’s) is Kerri. Kerri had a special relationship with Shane and KoKo. If Shane wouldn’t do what was being requested of him (bath, eating, getting dressed…..), Kerri would threaten to take KoKo until Shane changed his mind (too funny). It always worked. Sometimes Kerri would get KoKo to do rounds with her, hang out in the nurses station, and who knows what else they did. She was there the first day we started going to U of M, and she’s still on 7 West working with all of the special kids that have to go there. They are so lucky to have her. The next picture over is of Shane with Kim. That picture was taken in the spring of 04 when we found out that Shane’s tumor in his head had grown, plus new ones had also been found there. Kim and Kerri were definitely my strength whenever Shane was admitted over the last few years of his life. I’d always meet them in the hallway, tell them what the latest prognosis was (not making it through the summer one year, until Christmas one year, 6 weeks until graduation in 04, then the nasty virus when he wasn’t expected to make it overnight in 9/04). I’d have a good cry, and then they would remind me that it was Shane that we were talking about, and that he had beaten the odds before, and that he must have his own schedule for when things were going to happen. I was always so relieved to know that they were working when we were there. Kim was also there the day we started going, and she’s still there today (part-part-time as Shane would say)…… The picture right under that one is of Shane with Diane on New Years Eve, 1999. Shane looked forward to that New Years Eve for years before it happened. He took to heart the words from the Prince song, “Tonight we’re gonna party like it’s 1999”. He and Diane were a lot of fun to watch together. I’d be sleeping at night, and those two would be talking/whispering and laughing. Diane and Janell were the night shift nurses that the last couple of years when I would see that they were working in the middle of the night when Shane would be admitted, I would feel a sense of Shane “being safe”. Janell is still working on 7 West, Diane just recently left to work in another department at the hospital……The two square pictures right in the middle are of Shane with Joy (red shirt), and Raelynn (with glasses). They were both on 7 West when Shane was first diagnosed. Joy left to go to another department in the hospital, and Raelynn moved out west, both a long time ago. I’ll never forget the advise that Joy gave me not too long after Shane was diagnosed. They had a medical library in the hospital that was available for families to go to for medical information. I had asked Joy how to get to it and she said she would tell me, but for me to really think first about going there or not. She told me that sometimes it’s not always a good thing to know “ALL”, of the details of a disease, or type of cancer. That sometimes too much information is not a good thing. I am sooooo glad that I didn’t read up on Neuroblastoma way back then. I think being in the state of mind that I was in at that time, if I would have read all of the details and prognosis of Shane’s cancer, I probably would have thrown in the towel right there and then. Over the years I did read a lot about it, but by then Shane had already beaten so many odds I just believed that every child with cancer is different, and their outcomes are never written in stone……. Raelynn was a real night time nurse. Her shift didn't start until 11:00 p.m. Shane use to stay up and watch Nick At Night a lot, and sometimes he would purposely stay up so he could see her. When she left we went to her going away party at Joy's house (I think). Shane loved being a part of the little things outside of the hospital with them. The two pictures that are towards the bottom and are separated by a space are of Shane, Theresa, and Brian (Both from Child Life). Theresa’s first day of work was Shane’s first day ever for chemo. It was Halloween of 94’. For the next 8 plus years Shane and Theresa were buddies. The picture on the left is after all of us went to a U of M game. Shane learned that day that when it came to road rage, I had nothing on Theresa. That was the day also that Shane and I thought that Brian and Theresa would make a cute couple. Were we good or what, they were married a few years later. The picture on the right is from Theresa’s last day at the hospital. I let Shane skip school that day to go down to Ann Arbor for her going away party. All Shane could say that day about the whole thing was that “it just wasn’t right” ……. The picture at the bottom, above Shane and Devyn (in that “To Die For” Halloween costume), is of Shane with Lisa (Child Life). Lisa went with our group to the Dude Ranch in Colorado in 2000. She was always so patient, listening to Shane talk and talk when we would go to clinic for chemo or transfusions. They would talk about music a lot, and who was better, “The Nylons” (Lisa’s choice), or “The Rockapella’s” (Shane’s choice). It was a sad day when she left the hospital…… Devyn and Shane, well what more can I say about those two that I haven’t already. Devyn could get Shane to smile on his worst pain day, just by walking into the room. Halloween was a day that Shane looked forward to going down to Ann Arbor for, just so he could see what Devyn was going to be dressed as.
The last two pictures on the bottom are of the other group of VERY special nurses/doctor/staff that we came to love over the years. Sheila (Child Life) is on the left (the picture’s left) of Shane. Poor Sheila!!! Shane would give her such a hard time about doing any crafts (he would always tell her that he did them every-other year, and that it was his year to be off. Even though he had been saying it every year since he turned about 14). Sheila knew how to get Shane going though. Her favorite way was to come up to him and start singing to him. The look on his face when she did it was priceless. Sheila made a special trip to Bay City from South Lyon to watch Shane direct his last home football game halftime show when he was the drum major for his band. It poured almost the whole first half, but she stayed, and told him how proud she was of him and all of his accomplishments when it was over……Down in the front of that picture is Martha (l), who was always our ‘constant’ Wednesday nurse in clinic. She always had the best luck getting IV’s started on Shane when he was refusing to get a broviac or a port put in.…… Next to Martha is Marcia. Right after Shane had relapsed and we were going to clinic, I remember Shane and another teenage boy bending their IV lines on purpose so their machines would beep and she would have to come out to fix them (nasty boys). Marcia and her family went with all of us to the Dude Ranch also. It was nice to get to know her family after knowing her for so long ….. Next to Marcia is our famous, most special, most patient and giving, quite the artist (as Shane always thought), and also quite funny, Dr. Yanik. The day he took over as Shane’s doctor (after Shane’s original tumor removal surgery), was a true gift. Shane had been with him for so long, that when it came time for Dr. Yanik to switch from Pediatric Hem/Onc to Pediatric Hem/Onc Transplants, he managed to finagle it so that Shane could stay with him (THANK GOD!!). Shane always trusted Dr. Yanik, and always gave him credit for the years that he had after his diagnosis. Dr. Yanik would always go along with special requests when it came time for scheduling things and Shane not wanting to miss something special. He would always give Shane time to ask him questions after test results came in, but Shane never did. He always suspected that Shane knew deep down what was going on with his cancer. After the conversation with him in the spring though about the tumors in his head, and then again in the fall regarding the virus, I think he started to believe me when I would tell him that Shane really didn’t think about the seriousness of it all. I remember asking him in the spring that year if he would talk to Shane and explain to him what was going on. I hated doing it to him. I wondered how many other times he had had to do the same thing with other kids/adolescents, but I couldn’t do it myself. He talked to him better than I ever could. The words that came out were so caring, so careful. Not too much information, but enough that Shane understood. In the fall he had to do it again. This time asking Shane to sign the “Do Not Resuscitate” form. By the end of that conversation Dr. Yanik’s eyes had tears in them, I was a mess, and the two Interns that were in the room were crying. What a special doctor…… The nurse on the right side (looking at the same picture) of Shane, and also with him in the next picture, is Mary Jo, a.k.a. “Shane’s other mother”. The joke was that whenever we walked through those swinging doors into Peds transfusion, I signed over all parental rights to Mary Jo. Her and Shane together were a hoot to watch. He would give her a hard time, and she would dish it right back at him. Shane gave her one of his “Possum Lodge” patches from the Red Green Show. It’s a patch of a dead possum with his feet in the air with “The Red Green Show” written around it. After seeing it clipped on Mary Jo’s ID badge that she wore around her neck, Shane suggested that she turn it upside down (so it looked like the possum was standing), he thought the other way might scare the kids that she worked with (ha, ha). Mary Jo surprised Shane, and me, by coming and bringing her family to Shane’s graduation party. He absolutely LOVED it. It made his day so much more special for him.....Two other nurses that work in clinic, but were not there the day that picture was taken are Suzi, and Brooke. They were both such a constant part of our lives after Shane relapsed. Brooke could always take Shane's vitals without disturbing him while he slept. She has recently moved to 7 West, working nights, so she can finish up her classes at U of M during the day. Shane always said that Suzi was the dependable nurse in clinic. Always taking care of patients other than her own when things got crazy there. She would always come over and talk with Shane so they could catch up with each other.......This is getting long, but I have one more special nurse to talk about.
Shane met Beth the first day we went to U of M and they connected big time. Every kid that goes there is assigned a “main” nurse for each shift. Beth was Shane’s day shift nurse (Janell was Shane’s night shift). Anyone that knew Shane knows that he was a talker. Beth would come into the room to do some small task, and end up staying in the room while Shane would talk, and talk, and talk. She would eventually get paged and that would be her ticket out of the room. When Shane was around 9 he had this hand held game thing that told fortunes. He made some signs and Beth helped to put them up around the floor for people to go to Shane’s room to have their fortunes read. How funny! Nurses, patients, and parents and siblings of patients would come to his room to get their fortunes told. When Shane was not going to the hospital as often as he use to, he would get “Beth withdrawals” and have to call her on the phone. They would talk forever. When Beth got married Shane had been in the hospital the whole week leading up to it with an infection. Her last day there before her wedding she came in to tell him that she expected to see him on her wedding day. We really didn’t think that it was going to happen, and it would have crushed him to have to miss it. He was released from the hospital the day before the wedding with IV antibiotics. I remember sitting out in the parking lot of where Beth's reception was, waiting for his IV bag of meds that we had strung up on the coat hook to finish running. Even though it was Beth and Rich’s special day, they made Shane a big part of it by letting him sit at the head table with them, and getting him out on the dance floor numerous times to dance with them. It was a big day for him. When Shane was in 5th grade he asked Beth to be his “Special Person” for the day and go to school with him. I told him not to be surprised if she couldn’t because of work, or just for living so far away. I shouldn’t have said a word, she was right there for him, both of them dressed in their 7 West shirts. I’m not sure what year it was that Beth left the hospital to be a mom at home. I remember though that it was right after one of Shane’s inpatient stays for a problem, and I was so glad that she was there at the time. It was also nice for Shane to hear the news of her leaving from her, and not showing up there one day to find out that she was already gone. While working our way through the 107,501 plus fans at one U of M game, who else could be sending each other vibes (they laughed about it later) and by chance run into each other, Beth and Shane of course. I love that picture of them together. In the spring of 04 when it didn’t look like Shane was going to see graduation, and the tumors around his brain were giving him such a hard time, Beth was told and she came to see him. We talked for awhile while Shane slept. I told her how Shane was given his prognosis at the time and he still didn’t seem to be dealing with it. He seemed to be just blocking out the whole conversation that he had with Dr. Yanik. When Shane woke up I left the room so the two good friends could talk and catch up on all the happenings. Before Beth left she told me that she had asked him how he felt about his news and that he pretty much avoided the topic with her also. We decided that was his way of dealing with it, and whatever worked for him is what mattered the most. She was such a source of fun and comfort for Shane over the years. She’ll always be a special part of our lives.
This ended up being quite a mini novel, and those are only "little" statements about the nurses and staff that I had pictures of Shane with. There are so many, many more that were an important part of Shane’s fight with cancer that were not even mentioned. I’m sure he’s up there right now saying, “You didn’t mention Connie, Connie, Heidi, Deb, Mike, Tom, Dave ……….” There’s just not enough room to say everything that I would like to say about all of them.
Okay, a little bit about what’s going on around here. Adam got his ACT score back. When I opened it (yes I opened it even though it was addressed to him. I paid for the darn thing), my eyes started to water because his score (which was awesome), could have easily been Shane’s score had he been able to take that darn test under better conditions. The day he took it was the day after having 5 days of chemo. He was nauseous, tired, and mornings were always the worst time for his pain. So after taking a Phenergan pill for nausea, 2 Vicodin for pain, and then a dropper of liquid morphine for a more immediate relief for his pain, he went to take the test. Dr. Yanik had written a small letter for him to give to the test giver, explaining his current situation, and asking that he be able to leave the room if he had to (a big no, no, during the ACT). When Shane got his score he was so disappointed. It was so much lower than any of us expected. Everyone (especially his nurses when they saw him), explained that a test like that for a normal person to take is hard. For him to take it while on all of the drugs that he was on, and for not feeling his best at all, he had nothing to be ashamed or embarrassed about. They made him feel better. Back to Adam….on Shane’s birthday Kayla had gone out to the cemetery and left a note out there for Shane. It said, “Yeah, I think Adam’s ACT score is bogus too!! Happy Birthday Special Boy!” What a crack up. She had it tucked into a picture frame that I have out there. Adam called me when he was leaving the cemetery that night to see if I knew that it was out there. KIDS!! I’m sure Shane got a good laugh out of it. Adam and Samantha went to their prom last week and had a good time. They found out 4 days before that Samantha wasn’t going to have to be out of town and they were able to get everything together that quick…..Kayla is done with school. You may have heard her shouts of excitement about the whole thing from your homes. She got all A’s this semester. That is so good for her and quite a little boost for her self esteem. She definitely worked hard for it. I’m still finding note cards with notes on them laying around the house from her speeches…… I am getting over the “Mother” of all colds. I have never had a cold like this in my life. My special little kindergarteners have learned to share everything in class, even their illnesses. I don’t know if I’ve ever mentioned that I consider myself the queen of throw up (sounds bad I know). I can spot a kid getting ready to be sick from across the room. I have the talent of grabbing the waste basket and flinging it over some heads and down in front of the one that needs it in the blink of an eye (years of practice I guess, hee, hee).
That’s all for now from here. Memorial Day will soon be here and my decision about the grass at Shane’s site at the cemetery will be made then. It’s not looking good for the grass. Maybe all of the rain that we’ve gotten lately will help. I’ll let you know. Enjoy your spring, when it stops raining of course. Thank you all for still checking in.
Friday, May 12, 2006 7:00 AM I'll have an update soon with more pictures of Shane and a very special nurse of his, plus their special story. Also a little bit about all of the pictures from above. Keep dry, and warm!!
Wednesday, April 5, 2006 8:01 PM CDT HAPPY BIRTHDAY ADAM!! Wow, 17 years ago today my baby (I use to hate it when my mom would call me that, especially out in public) was born. I’ve always been honest with Adam and told him he wasn’t the cutest newborn I had ever seen (ha, ha). He definitely had an appetite back then. I was always told by their doctor to not give any of them cereal until they were 3 months old. HA! I was giving Adam cereal by the time he was 3 weeks old (I can see Shane nodding his head in agreement now saying, “Yup, he was a fat, fat, baby.”). Before I started the cereal he would cry every 2 hours for a bottle. I needed some sleep badly back then.... As a toddler Adam always seemed to have an issue with “Peace” in the house. Shane & Kayla would be quietly sitting on the floor watching T.V., and Adam would come up from behind and either jump down in between them, or hit them both in the head and then take off (Shane is nodding his head again in agreement). His grade school years were touch and go. Touch is a key word here because he could never seem to walk past anyone without touching, poking, putting them in a head lock,... I was told more than once that, “He’s all boy.” What exactly does that mean??? (I don’t think I want to know.) I remember his last day of grade school very well. I was working at the middle school and I heard my name being paged over the intercom. I went to the office and there was a phone call for me. It was Adam. He was crying because a girl also in 5th grade had wore a sweatshirt to school for kids to sign. Someone else had signed Adam's name on it and he didn’t want it on there soooooo….. he scribbled it out. WELLLLL, the girl didn’t like that and he ended up in the office calling me to tell me that I had to buy her a new sweatshirt for her to get signatures on (oops). Adam's time at the middle school was a semi-turning point for him. He either did good (his 6th grade teachers kept him in line very well), or he seemed to be at the wrong place at the wrong time a lot, and getting called on it. Thank God for sports!!! I do believe it is one of the things that has kept his head above water all these years. Now onto him entering high school. He has matured since he started there (I hope his teachers don’t read this), but I know him all too well and I know that he gives/has given some of his teachers a run for their money. He is definitely a talker (I’m sure in class especially). He is my “one, special, child” that I find myself saying to him at times, “You’re the only one here that, blah, blah, blah...., Shane and Kayla never blah, blah, blah....”. Shane would get more excited at report card time sometimes waiting to see what comments Adam would have on his report card, then what grades he would have. When Adam was a freshman his report card had comments in the 70’s (on their report card a number means a certain thing). We had NEVER seen any comments over the teens (Shane is nodding his head yes again). My “baby” has come a LONG way!! As a brother to Shane, he was the best!! Shane was diagnosed with his cancer the week before Adam started Kindergarten. I had been in Ann Arbor that whole week before he started school because of Shane’s surgery. I left late that Sunday night to come home so I could get Adam on the bus for his first day the next morning. He really has had some chaotic school years due to cancer being a part of his life. Shane and Adam shared a bedroom, and I know at times he saw more things regarding Shane and what happens to kids with cancer than I wish he had to. They (Adam and Kayla), were really forced to grow up in some areas way before they should have. Adam and Shane use to talk sports quite a bit..... statistics, trades, who’s going to win……, some of the talks would get a little heated because Shane always had to be right. Adam would eventually back off and let Shane win the debate, even though on a rare occasion Shane would be wrong (Shane’s NOT nodding his head yes now, ha, ha). Their BIGGEST debate of course being – U of M vs Michigan State. Someday I’ll have to put pictures on here of their bedroom from when they were younger. Shane had his U of M walls, Adam had his Michigan State walls, then the actual walls were painted “RED” underneath it all. A red that really reached out and grabbed you when you saw it (they both agreed on it). They will be brothers forever!!
Thursday, March 23, 2006 Please pray for more hope for Christi and her family.
Wednesday, April 26, 2006 0:06 AM CDT
Today is, and always will be, Shane’s birthday. It is so hard to imagine him as a 20 year old. He loved being a kid so much. Last year I had gone to New York for his birthday. It was a place that he loved, and he would have loved it so much more, had he been able to get out and see more of it when we were there. It was the best place for me to be at this time last year and I’ll remember that trip, and all of our trips that we took there together, forever. The other special part of my trip last year was being able to stop in Ann Arbor on the way home from the airport on Shane’s birthday and seeing everyone. Shane and I had been there together the year before (2004), on his 18th birthday when he was getting chemo. I think the last few years that Shane was here we managed to be in Ann Arbor on his birthday. I can’t think of a better place for him to have been on his special day. He loved it there.
Shane was not like most kids when it came to birthday time and Christmas time. Sometimes he would ask for some pretty unusual things for someone his age. The bottom picture is of him with a sun dial that he wanted that year. He and I had started a memory garden in our front yard that year to remember the kids that we had met at the hospital, but that had died. Before that year (and after), I would take the kids to a nursery in the spring and let them pick out a perenial to put in one of our flower gardens. That year, Shane saw that sun dial while we were there and he wanted it for his birthday. How could I say no? He was scheduled to have his first transplant (bone marrow at that time, his stem cell transplant came later) in June as soon as school got out. On the sun dial was a picture of some ducks flying. At the bottom it said, “Time Takes All But Memories." How appropriate was that at such a scary time back then with all of the “not knowing” what would happen. Also in that bottom picture Shane is sitting in his birthday gift that we called his “transplant chair”. It was sort of a kid size version of a VERY comfortable swivel rocking chair that we got for him to take to transplant with him. I wanted to use it to encourage him to get out of bed as much as possible while he was stuck in his hospital room for so long. It worked like a charm, plus it was so comfortable for me to sit in too. Those are only a couple of his unusual gifts that he got over the years. One year he asked for (and got of course (ha, ha)) a complete set of Atlas’ for every state in the U.S. They came in 2 boxes, each state having its own huge map to unfold and each with a bunch of trivia on them. He asked for one of those colored globes (blue for U of M), that you put in your gardens one year, a machine that would put star constellations on the ceiling and teach him their names, a talking globe of the world that would ask you trivia questions about all of the countries and continents…….. He would always type up his list with the name of the store or catalog that each item that he wanted could be found at. Not that this is an unusual birthday or Christmas request, especially for him, but he would always have somewhere on his lists, “U of M football season tickets.” Pretty funny huh? What a guy!! The sun dial and blue globe still go out in our memory garden every spring.
Since I’ve shown pictures from 10 years ago, and talked about Shane’s transplant from 10 years ago, now is the perfect time to share a special story…… One day last week I ran home during my lunch to drop something off. Randy said that I had just missed a phone call from a lady that I knew from Ann Arbor years ago. The last name didn’t sound familiar at first, and then he said her daughter’s name and I knew exactly who it was. Twelve years ago when Shane was diagnosed there were at least four other families that were also diagnosed with different cancers. It seems like it happened to all of us in the same week. Our kids’ chemo schedules were pretty much at the same time then, so between the 5 days of inpatient chemo, then days inpatient with fevers after that, we all got to know each other pretty well. I’ve written about Chelsea before because she had the same cancer as Shane, and she was the little girl that we begged to share a room with one time (the time “The Lion King” became my all-time favorite movie).... Bailey was a little girl (Chelsea’s best friend from the hospital) that had the cutest pout face that I have ever seen. She use to get around the hospital a lot by riding, and holding onto her IV pole while her mom pushed it. Her mom was a very early riser and always the first one down to the shower in the morning (always by 7:00). We use to tease her that she did that so she could have a 'hot' shower with more water pressure..... The last of the foursome was Brittany. She was more Shane’s age, and getting to the playroom when they were inpatient always seemed to be their goal. I remember them sitting in there at a table one time playing games, and they were counting their IV pumps to see who had the most. They use to get so many different chemos and drugs at one time back then the nurses would have to connect the pumps side by side, and then stack them. Shane of course always wanted to have the bragging rights for having the most. Sometimes he did, sometimes he didn't. He drew a picture one time of them in the playroom with their IV poles. I’ll have to try and find it. It was pretty funny looking because he was 8 when he drew it and art was not his strongest subject (sorry Shane). Last week it was Brittany’s mom that called. I hurried and called her back and we had a nice visit. Brittany is the only one left out of the four now. A happy ending cancer story for a change. Little Bailey died in May of 96’ just before Shane’s transplant. That was so hard for me because she was really the first child that we had gotten to know that didn't make it. Then Chelsea died not long after that after being in ICU for weeks. It was on the day that Shane was able to go home from his transplant (Chelsea, Shane and Brittany all did their transplants within a couple of weeks of each other. Brittany ended up spending weeks in ICU also before being able to go home. She's still having medical problems from her transplant) I'll remember that day forever. That was such a horrible year for our friends. Since talking to Vicky (Brittany’s mom) last week, she was able to get a hold of Chelsea's and Bailey’s mom also. It’s been ten years since we were all together, but they will always be a special part of my life that I will treasure. Brittany graduates from high school this year (WOW!!, it’s hard to believe), I am so happy for her. There was a short news story about her down in Detroit a little while ago. Here is the link to see it Brittany’s Story.
I guess the big news since I last wrote is that I heard from Governor Granholm (A secretary or assistant wrote the letter I'm pretty sure, then she signed it.). Her letter thanked me for contacting her office (One of my clues that she didn’t write the letter since I handed her my letter personally), for sharing my story about Shane, for Kayla’s letter to her (it wasn’t a letter, but part of her speech), and for my interest in the new bill. She said that she supports it and will pass the message on, which is all that I really wanted out of the whole thing. One down, many more to go. We can’t give up now!!
Today I’m going to take balloons out to the cemetery, and a gift that I got for Shane that I know he would love. Others would not understand it, but he would definitely get a kick out of it if he were here. I wanted to go to Ann Arbor this week, it just seems like I should be there, but I can’t seem to fit it into my schedule. Hopefully in a couple of weeks I’ll be able to go down. I haven’t been there since January and I’m starting to feel the withdrawals from it (smile). We’re going to have a large pepperoni pizza tonight for dinner from B & C (one of Shane’s favorites, and his last birthday cake (?? ~ ha, ha)). I’m sure he is going to be with us a lot today, just like he is everyday. ~ ~ ~ HAPPY BIRTHDAY SHANE !! WE LOVE YOU, AND WE STILL MISS YOU LIKE CRAZY!!
My exciting news since the last posting is.... when I posted last I said that I was going to get more involved in getting awareness out regarding cancer research for children’s cancer. What better place to start than with the governor, right? I had heard that Governor Granholm was going to be walking in our St. Patrick’s day parade here in our little town a few weeks ago. Sooooooo, I typed her up a little letter. Now how was I going to get this letter to her?? By walking right up to her of course. Adam and Kayla thought I was crazy, but they were my accomplices. I figured that I would hang around at the end of the parade route and catch her then. They (Adam and Kayla), were watching the parade from different spots and called me from their phones to let me know where she was on the route. Kayla said she had a BIG body guard/guy walking by her and he looked like he wouldn’t let me within 2 feet of her. She said that I was going to get arrested. I told her that she was going to be my “1 phone call, and to keep her line free.” Don’t ever underestimate the determination of a mom on a mission. It worked out perfect really. I had the letter (giving her some statistics on kids cancers, a little about Shane, a little from my speech for the Relay for Life, a little from Kayla’s speech, and then a copy of the program that we passed out at Shane’s funeral), all put in a nice big envelope for her. After the noisy fire trucks and police cars, the politicians rounded the corner and ended up on the side walk that I was walking on (what luck). I immediately saw the “Big Guy”, but he was busy talking on this wire thing asking for their car to be sent up. I walked around him, walked up to the group of black coats (they really did all have black coats on), said “Hello, Governor. I have a letter that I’d like to give you to read while you’re driving back home. It’s nothing bad, really.” She said ‘hello’ back, then ‘okay’, and then ‘thank you’. That was it (Shane was definitely doing one of those ‘shaking of the head in disbelief’ things). I haven’t heard a thing. Not that I expected to, but even a computer generated, standard, acknowledgement, that she even read it would be nice. I guess she has more important things to tend to (ooooo, was that a slam on the Governor?). I have a couple more things planned to do to get more awareness out there, but I’ll wait until I’ve done them, or wait until I at least have come up with a good game plan before I say any more. Please keep passing the word on about emailing your Congressman/women, or State Representatives (using the link up above). It’s the only way that there may be some hope for kids like Christi (please keep sending prayers her way) in the future.
Happy spring (that seems like a joke today)!!
Saturday, March 11, 2006 11:45 PM CST
If you get the Bay City Times, in Saturday's Edition (March 11th) there was a special section about Alex "Izy" Izykowski (Olympic bronze medal winner in the speed skating relay team ~ he's from Bay City). Anyhow, if you go to page 12, there's a picture of Terry McDermott (also from here, and also won a gold and silver medal for speedskating back in the 60's), with some kids from the middle school. Yup, that's Shane right in the middle (with his good friend Holli from back then (2nd girl from the right)). The caption says it was from 2002, but it's really from 97 or 98 when Shane was in 6th or 7th grade. Check out the hair, he was in remission then and feeling great.
This has been such a nice weekend. Just like spring (Do I seem obsessed with spring lately?). I love winter, really I do, but it’s time for it to be over. Not a lot has happened around here since I posted last. I went and listened to the high school band play at festival yesterday (Saturday) at Saginaw Valley. Shane use to LOVE competing at festival. Shane’s old (when he was in 11th grade) girlfriend, Sarah, has really become quite the saxophone player. She switched to the sax when they were seeing each other. I’m pretty sure that it was her that had a solo today, it sounded really good. I didn’t stick around for their rating. Hopefully they got a good one. The picture at the very top is from the St. Patrick’s Day Parade in 2003. It was so hot that day for it being March. It was the last parade that Shane was in because the band didn’t march in the parade in 2004. That was a big blessing in disguise because it would have been when Shane was in the hospital with the tumors progressing in his head. He ALWAYS reminded me that he had never missed any concerts or parades due to his cancer, and that he wasn’t about to start. He was always very determined when it came to something for the band. I remember him even leading the band to the football field more than once on crutches from the high school (It’s quite a distance from the high school, past the middle school, then around to the football field in the back). He did miss a couple of football games his senior year because that's when we were going back and forth to New York. It bothered him at first, but he soon accepted it because he knew it was one of those things that he didn’t have a choice with, it was a “have to.” After listening to the band I drove out to the cemetery and took off the grave blanket that was out there. Boy did I dislike that thing this year. I’m going to have to look around a little before next winter. I can tell already that the sod that I laid down at the end of summer last year didn’t do too good. We had such a dry fall last year, and gallon jugs of water just don’t water very much when you start dumping them out there. I’ll give it a month (if I can wait that long), and see how it’s doing before I tear it up and try again.
After coming a crossed the information on the Conquer Childhood Cancer Act of 2006 (see above in red), I’m tossing the idea around of getting more involved in missions like that. I have so many things around here to do and catch up on, but those “things” have been here this long, they’re definitely not going anywhere. I’ll have to start doing some investigating. I think that I need to start doing something like that though, not just for Shane, but for all of the other kids that are in the fight for their lives, and for those that have lost their fight. I contacted a mother recently to a young boy that died from a brain and spinal type of cancer (Choroid Plexus Carcinoma). She makes Memory Bears from some of the clothes of kids (and adults) that have died from cancer. We’re going to get together some of Shane’s shirts (how are we going to decide with so many (Remember, we counted at least 45 different U of M shirts that he had been wearing when he died. That’s not even counting the ones that I had already put away on a shelf because they were wore out or too small.)), and have a few bears made. I’ll make sure I post a picture when we get them. It won’t be for awhile though.
Adam was in a baseball league down at the Silverdome for four Sundays, that’s over now. Did everyone know that they are tearing that place down soon (not positive, but very possible). It really is run-down looking inside, but they probably haven’t touched it in a while since they knew that it wasn’t going to be there much longer. One game I took Adam because Randy was working. Samantha
I guess that’s all for now. Kayla had spring break this past week, Adam and I will have it at the end of March…….Kayla got a B on her English paper about Shane that I posted last time. She wasn’t too happy with the grade. I wasn’t too happy with some of the corrections that her teacher made on it. Rewriting “there” instead of the “their” (big DUH!) that she had written, changing a couple of her sentences so much that they meant something completely different than what she was saying…. there were quite a few things that he did that were wrong. I know that, and I didn’t even major in English – ha, ha…… Adam starts baseball this week (the real high school kind). Let the fun begin.
Will you please keep saying prayers for all of the kids that are fighting cancer. Truly not enough is being done to help them. Sweet little Christi
Take care everyone, and thank you for still checking on us.
Friday, February 10, 2006 9:46 AM I was able to go to Ann Arbor right after I wrote the last entry. It was a real nice visit, one I needed badly at the time. I think that sometimes I would be perfectly fine if I just took the drive down, turned around, and came back without seeing anyone. The drive alone always gives me a million memories that I love. This visit I was able to see everyone in clinic (except Nurse Martha). Upstairs at 7 West I was able to see Kerri, and also one of Shane’s night-time nurses, Janelle. It’s really hard to see any of the nurses that work nights because they’re just not there when I’m there. Sometimes Shane and I would luck out and he would have an early test down there and we would go a little bit earlier than that so we could run upstairs to see if any of the late nighters would still be there. I haven’t seen Janelle since Shane was admitted with that nasty virus in 9/04. She had been with us since his first admission back in 8/94. Shane loved her and was always amazed at all that she could do to him in the middle of the night without waking him up. She would come in and start doing things, he would open his eyes, see that it was her, and go back to sleep and not remember waking up in the morning. At Christmas one year way back when he was young, she gave him a dill pickle ornament. He would always proudly tell people that dill pickles were the only vegetable that he would eat. He use to eat dill pickle hot dog relish straight from the jar, a jar at a time. I missed seeing nurse Diane (got to her area too late), Brooke (she’s working nights now), and Kim (had the day off), hopefully next time. After I left the hospital I went down to Main Street, parked my car, and went shopping for a couple of hours. The snow was falling and it was so peaceful (even at 5:00), walking the streets then. Coming home there was one little incident of road rage that I may have started (hee hee). I definitely heard in my head what Shane would have been saying from the back seat. It was a nice trip.
Kayla got me a little statue for my birthday. My birthday isn’t for awhile, but she bought everyone their birthday gift for this year from Hallmark, and she gave them to us right away and said we had to open them (too funny). I love mine!! It definitely reminds me of Shane. The statue is also such an appropriate thing for what I’m going to print now. Kayla had a paper to write for her English class. She chose to write about Shane, his cancer, and the affect (or effect, I get those mixed up), it had on her life. It is a great glimpse of a small portion of what she went through over the years. If you read nothing more, go down to the end and read the last line….it says it all.
Many things affect how a person turns out in life. When I was growing up, my older brother, Shane, was diagnosed with cancer. This cancer had both positive and negative effects in my life. In the beginning I had no idea what was going on, but as the cancer went away, and then came back, and Shane had good days, and bad days, I became more aware of the hardships of this disease. My brother’s situation played a big part in how I acted as a child, and the way I grew up.
Shane was diagnosed with cancer on my seventh birthday. I don’t remember much that happened during that time because I was so young; but I do remember that I had no clue what cancer was. Through the Make a Wish Foundation, my family was able to take a trip to Orlando, Florida. We were able to go backstage at Nickelodeon Studios, and we were treated like celebrities. By then, I thought cancer was some sort of awesome thing where I got free trips and hung out with famous people. However, as time went on, I realized that cancer wasn’t as easy or as “awesome” as I once had. When I watched my brother’s reaction the first time his hair fell out, as a result of his chemo, or when he threw up for hours on end after treatments, it brought me to the reality of the situation. We were in for a bumpy ride.
Most kids are able to play sports and run around outside. A lot of the time Shane was stuck in the house, while me and my younger brother, Adam, played with the neighbors. His blood counts were too low to do any outdoor activities. He also had a broviac (an IV line that came out of his chest), which restricted him from swimming anywhere that wasn’t chlorinated. He wasn’t able to go more than waist deep in lakes, so we had to leave him behind while we swam. My brother’s being different in these ways presented a struggle for me at first, but I soon grew used to it.
When I started middle school in 1997, Shane was in remission. Everything went back to normal. I never cut Shane any “sisterly” slack just because he was sick. In fact, I picked on him more because everyone thought he was “so special.” The result of his life going back to normal meant my life could go back to normal too. I had a whole family at my house all of the time, not just three days out of the week. This remission meant that favorites couldn’t be played because he was just like my younger brother and me now, but we spoke too soon.
My 7th grade year at middle school, the cancer came back. Things went right back to how they were (this was a long redundant process). My mom and Shane routinely traveled to Ann Arbor for treatments. Unlike the first time, Adam and I were forced to grow up and to start taking care of ourselves. We had to wake up by ourselves in the morning, go to school alone, come home to an empty house, and most of the time, we were alone on schoolwork. That year my mom and Shane traveled to California for a new treatment; they were gone for two weeks, leaving us alone again. On top of that, Christmas Eve of that year, Shane had a stem cell transplant. We had to decide whether to celebrate Christmas with only half of our family, or to spend Christmas in the hospital with all of our family. We stayed in the hospital. Shane didn’t ask to be in the hospital on Christmas, so I didn’t complain that I had to wake up in a hotel room on Christmas morning. To keep his morale high after his treatments, I decorated his dull hospital rooms, told jokes, and did anything to lighten the mood. This transplant stabilized my brother’s health for a year and a half, and our life; once again slowly went back to normal.
The spring of my freshmen year of high school, the roller coaster began again. Shane’s condition got worse. A lot of the time, the attention Shane received from the cancer made me angry. I was a teenager now, so my parents expected more out of me. Spending any time out of the house, even going to school, was a vacation. I lied to my parents all the time so I could leave more. A negative side of me took over, and I always made it known that I “hated” everyone, including my family. One year, I planned a family vacation to Florida for Spring Break. The year before we had tried to go to Las Vegas, but Shane got sick the day we were supposed to leave; suitcases packed and all. The same thing happened this time. Shane got pneumonia and was admitted to the hospital. He was heart broken because he knew how much I wanted this trip. With his weakening health I again began to see that Shane didn’t ask to be sick. My attitude began to change after that and I decided if Shane couldn’t go to Florida, I’d bring Florida to him. I stayed up all night and made a life-size beach with real sand that took up his whole hospital room. It was my way of letting him know that it was okay that we didn’t make it to Florida. I began to give Shane a lot more credit for what he had been through all of his life. Although I had changed my way of viewing things, I think it happened too late. During that stay at the hospital, my mom called my dad and told us to come to the hospital as soon as possible. When we got there, my parents took us into a room and told us that Shane wasn’t going to make it much longer; his cancer had spread too much. My first thought was, “Yeah right. He’s fought this long, he’s going to make it.” I was only trying to be strong, especially for my little brother.
Shane wasn’t expected to make it to his graduation. To everyone’s amazement (again), Shane made it to his graduation and received a standing ovation, showing how proud the audience was of his strength. I never liked to show much emotion or be vocal, but I was screaming right along with everyone else.
That fall Shane enrolled in Central Michigan University, and moved over there. I was surprised that he had any motivation to move there and go to school despite the day to day guessing of how he would feel each day. He didn’t get to stay one full semester at CMU because the cancer spread, so he returned home. At least he tried. We still joked, and I still treated him like the bratty older brother that he was. In October, Shane began losing the ability to do certain activities such as walking, eating, and even talking. At this time I tried to stay away from home as much as possible. I couldn’t bear seeing my brother so weak. But after I saw him lose the ability to talk, and go to the bathroom by himself, I knew there was no possible way of his health coming back. I decided to spend as much time with him as I could, and to make him as comfortable as possible. Shane passed away on November 30, 2004.
Fighting was the story of Shane’s life. My family had to adjust to chaos as soon as the cancer started, and had to re-adjust time and time again as it went away and came back. I gained a tremendous amount of strength having to deal with it all, especially when I was a young kid. Learning the correct way to deal with the situation, choosing to be positive and not negative (although a struggle at times), to tell jokes when necessary, and to keep everyone strong, helped us all deal with the disease. I don’t see my brother’s death as the cancer beating him. He fought for ten years when he could have given up at any time. In my book, that’s a draw. Above all else, hope was what got us through it all....... I learned that hope dies last.
Well, that’s a little of the ‘behind the scenes’ living with cancer. I don’t remember some of the things happening exactly the way she does (waking up a lot alone, mostly alone on school work ~ smile), but to them, that’s how it seems, and that’s what matters. I give her a lot of credit for writing it. I’m sure there will be more papers in the future.
I have to end this entry with a funny story, but before I do, please, please, please, say some prayers for Christi. She has progressed so much recently. I know so well some of what her parents are feeling right now. It is such a roller coaster ride as Kayla said. The ups from good days and no pain or complaints, and the downs from the cancer’s symptoms, sometimes visually staring you right in the face. She is getting a harsh chemo right now. Hopefully it will give her some much needed relief, and some clearing of her cancer.
Here is my story… a couple of weeks ago at church I was watching a family a few rows in front of us. If you don’t know, we Catholics hold hands (raised up a little), during the Our Father. During the Our Father that day the little brother (2nd grade), was unwillingly holding hands with his sister (8th grade). He kept trying to get his hand away from hers. She kept squeezing it tighter. He finally whacked her hand into the row in front of them, which then alerted mom and dad to what was going on (boy did he get the look). I was standing there through the whole thing, having flashbacks of my own of when Shane, Kayla, and Adam couldn’t say the Our Father without it almost breaking out into a brawl. Shane would always hold his had a different way, which Kayla didn’t like. Adam would always squeeze Kayla’s too hard, and hold Shane’s hand up too high (ha, ha, it’s not always easy being short). And Kayla just didn’t want to hold hands with either of them. So, always through the Our Father I had to keep my eyes on them. That Sunday, as the kids in front of us were struggling, I looked over to get Kayla and Adam’s attention so they could see what was going on. What do I see….. Adam, digging his thumb into the back of Kayla’s hand. When I squeezed his hand, to let him know that he was busted, he gave me a, “But, mom” look. By then the prayer was over and he then showed me his hand where Kayla had been digging him with her fingernails. Ugh! After church I went up to the family in front of us and told them my story, and told them not to be too hard on their son. After all, my kids are in college, and a junior in high school, and they still can’t say the prayer without a problem. They never grow up do they?
Two quick things….. I passed my test YYAAAAYYYY!!!!!!... and…… our gas and electric went down over $100 this month, YYAAAAYYYYY!!!!! (again). Adam went to the doctor for a cold the other day and Kayla tried to talk him into telling them how low our heat was set at, and to encourage them to call Child Protective Services again. She just won’t give up (ha, ha).
It’s staying light outside longer these days. A sign that spring is on its way (YES!). Keep warm, and please don’t forget about Christi.
Sunday, January 22, 2006 12:16 AM CST It’s been awhile. The hustle and bustle of Christmas is over. It’s scary to say that I almost miss it (did I say that?). I guess I’m really just disliking the down time write now. Not that there isn’t enough around here that I could/should be doing……. maybe it’s the winter blahs time for me. I’ve been having some long days and nights lately. Over the years that Shane was getting treated so many things got pushed aside, especially when it came to cleaning, or sorting through things (school papers, cards and letters that Shane got over the years, etc. ). I’ve been trying to go through things, especially in the basement (re-doing/fixing it up is a project that Adam and I want to get done). There are always happy memories at first when I start going through a box. Shane was such a hoot with some of his writings, stories, pictures…….I just have to learn not spend too much time at one sitting. It seems to turn quickly sometimes the other way. I found a paper from when we had gotten back from his second transplant. I was hoping that some day I would come a crossed it, it was a fun thing to find. It’s a copy of "his" school schedule that he made up. I would bring his homework home for him weekly (he was self-teaching himself at the time), and he came up with a schedule. He was scheduled to wake up at 8, with free time right away. He would then do math at 9, language arts at 10, and then at 11 he would do science every-other day, and watch Scooby Doo the other days (I'm sure Scooby got 3 out of the 5). Lunch and watching Matlock were at 12. At 1 was history, and at 2 was (this is confusing) Scooby days, science, or other days read Harry Potter for a half hour, then band for a half hour. How funny is that? We wouldn’t have wanted to interfere with his “Scooby time", now would we? The 8th grade teachers had gotten Shane the 3 (at that time) Harry Potter books that were out then. They then had one team of 8th graders write messages and sign one book each. The third book was signed with messages from all of the staff there. Shane LOVED them, and read all 3 before he went back to school that year..... There is so much in the basement, the “other realm” (as we call it - extra walk in closet upstairs), and Shane and Adam’s bedroom, that I need to go through and haven’t. I mentioned to Adam a little while ago that when we’re done with the basement I promised to get up in his bedroom and start going through Shane’s things. Everything is pretty much as he left it. We moved the furniture around a little last year, not much though. His clothes are still in the closet and his dresser drawers. His desk still has clutter all over it, and in it (anyone surprised there?). His side of the closet has the shelves packed with “Shane” things (mostly U of M, Red Wings, Red Green, and papers galore). After I mentioned it to Adam he said that I didn’t have to. I told him I know that I didn’t ‘have to’, but that I probably should (I was thinking that he might want some of it boxed up so he could have more room up there). He then asked me if it was written somewhere "when" we should do it. Wow, I’m kind of glad that he feels that way. It’s definitely not written anywhere that I know of. I guess I’ve never been one to follow what’s written anyhow. So for now, everything in his room is going to stay where it is. Maybe I should at least dust it off though huh? I don’t think that I’ve ever told about our living room and where we brought Shane’s bed down to when he couldn’t get up the stairs anymore. In that corner is now his keyboard that he got on his 18th birthday. It doesn’t really look good there, but I like it there. Next to the keyboard are still the 2 boxes with medical equipment in them that I packed up after we took his bed back upstairs. Don’t ask me why they’re still there, I really don’t know. I just don’t have the nerve to get rid of them yet. For the longest time I tried to find a place to take them (give them away), Hospice, the hospital, Red Cross….. but no one would take them because they’re ‘medical’ things. I could have ‘given’ them away, but I couldn’t/can't take throwing them away yet, so there they still sit. Someday I’ll be brave enough to do it. On top of the boxes lies Shane’s letter jacket. We’ve had it out a couple of times recently to have Adam try on and to look at. Adam got a letter jacket for Christmas, so we used Shane’s to compare the size and wording to. On top of Shane’s jacket now is his U or M stocking hat that he has on in a lot of the pictures that show up on here. He had that hat since he was in the 8th grade. There’s also 2 of Shane’s U of M baseball hats with all of that, quite the little corner of the room it is. Someday I’ll be able to take it all and put it away, I guess I’m just not ready yet. Like the answer to the question that Adam asked, there’s nothing written down as to "when" we’re suppose to do it..... It’s funny listening to Kayla tell Mitch (boyfriend) different stories about Shane. She’s writing a paper about him for her English class. There was a lot of conflict between the 2 of them at times. As Kayla said, Shane would always tell on her for things, and then she would get in trouble. He was always pretty observant about the goings on around here, and he would definitely let me know when someone was not behaving (our little conscience). We were talking about that last week and I told her some of the things that he had told me about her and what she was doing at the time (when she was in 10th-11th grade). She laughed (NOW, she would have taken him out back then had she known). She really has come a long way. A couple of years ago she was really full of a lot of anger and negativity. Kayla, Adam, and especially Shane, didn’t ask for any of this in their lives, yet they were forced to be a part of it for over 10 years. There were times when Kayla didn’t handle it well, and then something would happen to Shane (non stop vomiting, his losing his hair again, boughts with pain, or the signs of his cancer progressing), that would make her remember that he didn’t ask for any of it either. Near the end of Shane’s battle she was sort of keeping a safe distance from him. I think it was almost her way of protecting herself from the emotional pain that was about to be with us all. I had to talk with her a couple of times back then to let her know that she really should spend some time in the room with him, that she soon wouldn't have that chance anymore. Mind you he wasn’t always the easiest person to talk to at times, especially when he was watching T.V. (complete tunnel vision). She did get in there more and I’m happy for that. Adam would sit with Shane and they would talk sports a lot. Football, baseball, basketball.....Shane knew a lot of the stats for all of it. New players, old players, trades…… he was definitely our own ESPN. I’ve taken a few days off from the boxes, I guess this week I’ll have to start it up again, just not for as long at a time.
Small update ~~ 1/8/06 Yes I know that it's HAPPY NEW YEAR (not YEARS), but it was late, I was fighting with the computer that night and the computer was winning, so I left it. We'll just say that I did it on purpose and that I'm not just wishing everyone one HAPPY NEW YEAR, but many HAPPY NEW YEARS ~ (ha, ha).
Has anyone gotten their gas/electric bill lately?? We heard in the fall that the price of gas was going to be really high this year so we decided to run our heat REALLY low. We started it at 64 degrees, and that went pretty good, so we’ve lowered it to 62. It’s really not that bad. You just have to have socks, and a sweatshirt or sweater on most of the time (maybe some blankets too, ha, ha). The only time it gets bad is when we’ve had the rain and it’s damp outside, then I turn it up to 63 (smile). Kayla said she’s going to call Child Protective Services and get us in trouble (she’s pretty funny). All that, and our January bill was still $150 more than December’s bill. We may have to drop it down to 60 (that’s not going to happen).
Last weekend I was having a mild “Shane” day. I had been working in the basement and was stopping for the day. I went out to get the mail and as I was walking back going through it, there was a newsletter from Ann Arbor with a big picture of Dr. Yanik on the front of it, grinning from ear to ear. It was just what I needed to see. He and Shane were so funny together sometimes. The newsletter was about the Bone Marrow Transplant department at U of M, and how many adults and children they have go there every year for transplants. It’s really come a long way since Shane’s first transplant. This week I plan on going down there for a visit. I had wanted to go this past Tuesday, but we had gotten the big ice storm that day. I’m shooting again for this Tuesday. The last time I was there was to say good-bye to Devyn (our friend from Child Life), back in September. He emailed me a little while ago to say that he was taking a trip to NY at the end of January. He wanted to know what Shane and I had gone to while we were there. He already has tickets to the Lion King (that was our favorite thing to do). I sent him back a copy of a few pictures of Shane in NY. In each picture Shane is holding the map of NY with all the things to see on it (I wasn’t allowed to hold it – he was “The Keeper Of The Map”). I pointed that out to Devyn, and then enclosed that map that we had used back then and told him that I was passing the map onto him now, and for him to make Shane proud. I’m sure Shane got a good laugh out of that one.
Well with each day that goes by I know that we are one day closer to spring. I love winter, but this one has been such a blah one. Way too much rain and lack of sunshine for me. Thank you all for still checking in. News around here is kind of slow these days. Will you please keep saying prayers for the kids who are still fighting (especially Christi – link is listed below), and for strength for the families whose children’s fights are over.
Stay warm (you don’t want to come here)!!
Oh... remember that test (kind of like an ACT) that I had to take back in December, I still haven't gotten my results back yet. I told Randy that my score must have been so awesome that they just forwarded it on to Harvard (ha, ha).
Wednesday, January 4, 2006
I found the picture that I was looking for. It's of New Years Eve 1999 just after midnight. That was the most awake that Shane had been the whole previous 24 hours to that moment.
Nurse Diane, KoKo (love those glasses), and Shane ~ Toasting the New Year with apple juice (ha, ha).
Sunday, January 1, 2006 ~ Very early (ha, ha)
HAPPY NEW YEAR to everyone!!
I love the pictures up above. They show Shane having fun like he did every New Years Eve. Even in 1999 when he was in for his transplant. He had slept the whole New Years Eve day and night, missing all of the festivities on T.V. for the millennium. Remember all of the predictions about what would happen at midnight back then? The major computer problems, everything possibly shutting down everywhere. During the day at the hospital they were getting ready for anything. They had to really, not knowing for sure if there would be power, computers...... Shane would wake up once in a while, ask what time it was, then go back to sleep that day. His afternoon nurse that day was Connie (Crazy Connie he would call her). She was a hoot!! She had come into his room one time and was unplugging everything. His IV pumps (he had a ton of them at that time), his bed, and she had all of the cords in her hand trying to lift them over his bed to the other side without waking him up (She was going to plug them into the "Red" outlets that were the back-up outlets). Well he opened one eye and saw her leaning over the foot of his bed with all of these cords and he mumbled the question, what was she doing? Connie replied (in her ever so quiet nurse voice ~ (big ha, ha)), HONEY, THEY TOLD US THAT WE COULD PICK ONLY ONE PATIENT TO SAVE AT MIDNIGHT, AND BABY I'M PICKING YOU!! He opened his other eye, looked at her for a minute, gave a chuckle when he realized she was joking, and then went back to sleep. Too Funny!! He did have me wake him up a few minutes before the ball dropped and he ended up staying awake then for awhile. There's another picture of him with his night-time nurse (Diane), that night that I'm going to try and find to get on here. It's a really cute one. Nurse Diane always came in for the late shift. For some reason, and then after awhile on purpose it seemed, Shane would use his bed pan right at the beginning of her shift. Well New Years Eve was no exception. Not too long after the ball dropped we had to buzz for Diane. When she came in and found out what it was for she started giving him a hard time about it. He was very awake by then and gave her a hard time back saying that he was excited that he was her 'first' bed pan of the new millennium, and that no one would ever be able to take that title away from him. She came back into his room a little while later and slammed something on his bed table, turned around to leave saying, "Take them all", as she left (kiddingly). It was a handful of Imodium. He laughed. When Shane was in the hospital in the spring of 2004 with the new tumors in his head, Diane came in after he started feeling better and gave him a bed pan that she had decorated all up for him. He kept it. He said he was going to hang it on the wall. It's still upstairs in the closet........ The New Years Eves (not proper English, I know) after that he pretty much spent with his friend Stacy. He would go to her house and eat dinner, then stay for awhile. They had crab legs that night and he loved them. His last year that he was able to go over he came home with a bandage on his finger. He said that he had a fight with a crab leg, and the leg had won. The one year I know we all (Kayla and Markie, Adam and a friend, Brice (our neighbor)) went bowling when they were done eating. That was one of Shane's favorite things to do. The close up picture of the two of them together is my favorite. Shane laughed and said they had to take it a few times with the digital camera before it turned out. I think it turned out great! Stacy gave it to him later in a Scooby-Doo picture frame that said "Good Buddy ~ Ol' Pal". That was one of the things that we put with Shane when he was buried. He wouldn't have wanted it any other way (he probably would have wanted that decorated bed pan too). Stacy came over last night and we had a nice, long visit. Her mom still makes the crab legs on New Years Eve. I'm sure Shane was right there with them last night during dinner.
Well, for 2006 I'm not going to make any resolutions. I'm just going to focus on 'One Day At A Time', and not worry too much about the future. Carpe Diem (or Carpe Ductem for Red Green), right Shane?......Will you please keep in your prayers Christi (site link below). Her last tests showed that her cancer has progressed again. That is such an emotional roller coaster ride that you 'never' get use to, no matter how many times that it happens. Let's also hope and pray for some type of new treatment for Neuroblastoma in the year of 2006.
Take care everyone!!
Sunday, December 25, 2005 1:58 AM CST
I heard a song today that made me think a lot. It’s called “The Gift”. The words that stuck in my head were, “I can’t find the words to say, that I’m thankful everyday….. for the gift.” The time that the picture above (not there anymore) was taken was definitely “a gift.” It is from our last Christmas with Shane in 2003. Shane was feeling good that day, and that’s all that we really cared about. Another ‘gift’ that we had this time of year was back on Christmas Eve day, 1999. That was day that Shane received his stem cells back for his 2nd transplant (he had already gotten his MIBG treatment (internal radiation) a couple of weeks before that). Even though he was upset at first about being in the hospital over Christmas, he soon settled into his room, and we started our plans to bring Christmas to him. Teresa from Child Life found a full size artificial tree for us to put up in his room and decorate. He loved it!! It made a big difference (and helped him), that it was there. While Shane was getting his stem cells that day, I couldn’t help but think about how special of a day it was for him to be getting them back, Christmas Eve. I knew it had to mean something, and it did. I believe that transplant gave us 5 more years with Shane. What another gift.....Kayla, Adam, and Randy came down to Ann Arbor on Christmas Eve that year. Shane was pretty knocked out still from the transplant when they got there, but he came around after awhile (Kayla and Adam occupied their time by wheel chair racing downstairs at the hospital in the deserted hallways - bad mom, I know. They had fun though). Christmas morning that year Shane was feeling pretty lousy, but he managed to get his gifts opened and then fell asleep for the rest of the day. It was a short visit with Kayla and Adam, but we were able to be together for awhile…… Did you notice the pathetic tree in the picture at the top? We always manage to get the "Charlie Brown" trees each year (Randy says we do it on purpose). This tree was definitely a sad one. Adam was as tall, if not taller than it. This years tree hunting wasn't too bad. It was really cold when we went so we rushed around, said 'this one, or that one', chose the "Charlie Brown" tree again (Kayla chose this year, sorry Shane), and left with it in the back of the truck. They always look so nice though once they're all decorated.
Again, MERRY CHRISTMAS everyone. Enjoy your day with your family and friends!!
Saturday, December 17, 2005 10:11 PM CST November 30th came and went kind of quickly. Boy was it cold and windy that day. To me, Tuesday the 29th was more of the anniversary of Shane leaving us than Wednesday. I went out to the cemetery Tuesday morning to take his grave blanket out there. I’m not really happy with how it turned out (U of M colors). I've taken a bunch of stuff that they had on it, off of it, and I’m still working on it (What’s with all the snow already staying on the ground?). Tuesday afternoon I went out to the cemetery again. I couldn’t think of any other place to be. I sat out there for a little while and watched the minutes tick by until the exact time came, 4:26. Before I left I kissed my hand and passed the kiss onto Shane and KoKo’s picture. Tuesday night Kayla worked and worked on a project to take out to the cemetery for Wednesday. It was 3 years ago (2002) at this time that Shane wasn’t expected to make it to that Christmas. The chemistry classes at his high school donated money, and the teacher (Shane was in one of her classes), ordered some U of M things for him. The box that showed up at our door was HUGE. In it were a U of M bean bag chair (with arms and back to it), a U of M blanket, Lloyd Carr bobble head, U of M pillow, car magnets, and some other things. Kayla had said that the box was a Christmas present for her, until she saw Shane’s name on it. A while later another good size box showed up. Again, Kayla yelled that it was a Christmas gift for her, and again, Shane’s name was on the box. This time it was the foot stool to go with the chair. Here are a couple of pictures from back then. The first one is of Shane with some of his gifts (the hat he had already had forever). The second one is of Kayla trying to take it all over when Shane left the room for a minute. This was one of those times again when we were told to expect the worst, but he rebounded and was able to go back to school before Christmas break.
All of this “boxes showing up with Shane’s name on them,” prompted Kayla to say, “Oh, it’s for “Special Boy”.” A title that stayed with him from that day on. Kayla’s project Tuesday night was a long banner with “Special Boy” written on it, all decorated up. Instead of getting it laminated (like I told her she should do), she cut and taped a bunch of Ziploc bags over it (pretty creative, huh?). It’s still out at the cemetery up against Shane’s bench. It’s doing pretty good considering all of the snow that’s out there….While I had the house to myself for a little while Tuesday night (that doesn’t happen that often), I opened the box that I had mentioned in my last entry. In it were the things that I had bought on Shane and mine’s last day in Ann Arbor back in November of 2004. The things were so Shane. The musical box was how I remembered it. A boy and girl snowman/person on the ground, looking up to the sky and seeing a snowman/boy angel flying above them. There were also a few ornaments in the box. One was of a snowman angel on top of a blue bell. One was a snowman angel with a small blue stone on his chest (that one’s cute). There was a snowman with a blue and gold football helmet on, sitting on top of a blue and gold bell (Shane would have loved that one). The last one I didn’t remember at all, but it was a nice surprise. It’s a star, a couple of inches big, with a sleeping face painted on it. Coming out of the bottom corner are musical notes. I really love that one. I’m glad that I opened them up…….On Wednesday (the 30th), my balloon idea would have worked better if it wouldn’t have been so cold and windy. If anything, the wind took the balloons up higher than the helium in them. Adam and Kayla both made a couple of trips out to the cemetery that day, sometimes going with friends. I had gone out there a couple of times (checking on the balloon situation), running into Stacy (Shane’s locker partner) one time. There were flowers, homemade cards, special balloons, notes and pictures, left out there for Shane. By days on the calendar it’s been over a year since we last saw Shane. For me, by memories, it sometimes seems just like yesterday that he was here with us and laughing. The whole day went a little easier than I thought that it would. It ended with a phone call from Shane’s nurse Kim. She wanted to tell us she was thinking of us, and to see how we were doing. We talked for quite a while about Shane, her phone call last year on the day that he died, and how he’ll always be with us. It was a real special way to end the day.
News this time from our house is…….. We finally got Kayla’s car back yesterday - YAAAAYYY!!!! The juggling of cars was really starting to get crazy. She received a letter about the court hearing for the girl/lady that hit her. I took it upon myself to send the Prosecuting Attorney a letter. It was kind of a little vent on my part about how I had just lost a son a year ago, and how because of this person’s selfishness and total lack of responsibility (plus the fact that it was her third drunk driving offense), I could have easily lost a daughter too. We’ll see how that whole thing goes….Kayla has survived her first semester of college. There were a couple of times that I wasn’t sure if it was worth all of the complaining (kidding). I have proof-read so many papers this last month between her and Adam. I am more educated now on the history of the Lion’s football team and where they play/have played, the topic of photography as a hobby, the topic of elderly people and their driving, school budgets and millage proposals, I cant’ remember what else…….Adam once again made us proud by being a Pom Pon girl/boy last week. He did it for the first time last year, and had fun and really did a good job. He has a forever friend (they’ve been friends since kindergarten) that’s a pom, and every year they do one guy/girl routine. She’s asked Adam to be her partner the last two years. I really think he should hang up the football cleats and consider professional dancing. He’s really good at it (ha, ha (really). He must get all of his rhythm from me……This week I needed Shane badly. He would have loved this. I had to go to Delta College and take a test, kind of like an ACT test. I HATE TAKING TESTS!! I HAVE ALWAYS HATED TAKING TESTS!! I’M NOT GOOD AT TAKING TESTS!! I’ve know about this for over a year now. It’s for my job at school and the, “No Child Left Behind.” I had to take it, and pass it, before the end of this year. I had one of Shane’s graduation pictures in my pocket for luck. I pictured in my head some things he would have said when I took too much time on some of the math problems. I mostly pictured him laughing at me really. The test is over and done with. I survived….. not by much though. That was 4 looonnnggg hours. I should get the results back in a few weeks. Keep your fingers crossed.
The first of December I emailed Dennis, the drum major for the U of M band. I had wanted to go to their concert that they have indoors then, but it just didn’t work out. After going to the football game and seeing him be the drum major again this year, I wanted him to know how much of a fan of the band that Shane was, about our last game there just before Shane died when we saw him perform, and how much I appreciated he and Matt (the previous drum major) coming up to see Shane when they did. He sent me an email back a little while ago, I want to show you what he wrote…… What a guy!!!!.....
What an unexpected surprise when I received your email. Of course I remember meeting you and Shane. In fact, meeting him was my first “official” act as drum major, and holds a special place in my heart. Matt and I spent the entire 2 hour drive back to Ann Arbor talking about Shane and your family.
I was so humbled when I read about you and Shane coming to watch the band and the emotion you both felt. To think that something I have done has had some impact on Shane’s life, as well as yours, is an honor that I will keep with me for the rest of my life. I consider myself blessed to have had the chance to meet him, and words cannot express my sorrow for your family’s loss. At the same time, however, that sorrow is overshadowed by a stronger feeling of admiration, respect, and awe for Shane.
People always ask me, “What’s your favorite part of being drum major?” And in all honesty Mrs. Rezmer, it’s not the roar of the crowd, or the tradition of Michigan, or the thrill of performing. My favorite part is the influence it has on people, what it means to people…what it DOES to people. Because in the end, the position only means something if people like Shane and you think it’s something worthwhile. And your email is proof of just that. Your kind words were deeply moving and have left an indelible mark on my heart. Thank you so much, Mrs. Rezmer for allowing me to have a little part in Shane’s grandiose life. If you are ever in the Ann Arbor area and wish to sit down for a cup of coffee, or maybe just take a walk through Michigan Stadium and reminisce, you only have to let me know and I’ll be there.
And thank you…Shane.
Wasn’t that nice? This entry is getting pretty long so I’m going to stop for now. You’ll have to check back in a couple of weeks to see about my next ‘mission’ that I’m on. It has to do with the Social Security Department, Shane getting a letter in the mail from them the week of the anniversary of his death, and the letter saying that they were denying him any benefits because he didn’t have enough of a disability for him to qualify for anything (mind you we applied for this on October 20, 2004). Needless to say I was mad when I read it, so I’m gearing up to take them on. If anything, just so something like this doesn’t happen to someone else. The whole thing is crazy!!
I hope everyone has a really nice Christmas!! I'm going to be heading down to Ann Arbor within the next couple of weeks, withdrawal is setting in again. Plus I need to give them all a hug and wish them a Merry Christmas. Please keep in your prayers all of those who will be having their first Christmas without someone that they have lost this year. Especially the parents of children that had to leave too soon.
Stay warm!!
Wednesday, November 30, 2005 If anyone wants to release a balloon today to Shane, we're going to have them out at the cemetery around 11:00. It's going to be pretty cold out so I'm not sure how high off of the ground they're going to be. If anything, Shane will get a good chuckle in heaven watching the goings on down here. Whatever is left tonight when we go out there we'll just release to him altogether....Thank you everyone for still thinking of Shane
Tuesday, November 29, 2005 6:42 AM CST
I am so tired of that song already. That has always been 'the one', these last few years, that when I hear it, I either feel like screaming “SHUT UP”, or I feel like crying. It’s almost a joke anymore. It's like there’s a surveillance camera looking over the parking lot and someone calls the person in charge of the music and says, “Here she comes. She’s on her way in.” I cannot go into any store right now without hearing that song before I leave. On Saturday I had to laugh when I heard it for the 3rd time, in the 3rd store I went to. They're out to get me. I will be sooooo glad when Christmas is over!!
Even though tomorrow is officially one year from when Shane left us, to me it’s still Tuesday at 4:26 p.m.. I am doing better than I thought. The anticipating of November coming and remembering everything that led us to this day last year, was worse than November 30th actually arriving. I remember so much from last year and Shane’s last few weeks with us, I’d like to share some of that with you….. I remember that the last meal that he ate was in Ann Arbor on the Friday night of his last chemo (almost 3 wks before he died). It was a 12 inch sub from Subway, no vegetables of course, and a Belgium Waffle from Big Boy. We even bought another Belgium Waffle just in case he wanted it for breakfast the next morning before we went to the game. After the game we did stop at Mongolian Barbeque (our FAVORITE restaurant in Ann Arbor) and I got him a take out (we had to complete our ‘game day’ tradition of course). He dictated to me everything that he wanted in his bowl (no vegetables of course - again), what seasonings, and what sauces to put on it. He was VERY particular when it came to that (ha, ha). He didn't get to eat it all, but he had a few bites…….. I remember after Shane stopped eating, he did keep drinking. Boy did he drink. It was always between Pitch Black Mountain Dew, Minute Maid Lemonade, or Dasani water (it had to be Dasani ~ how could I tell him no). All of them had to be really cold before he would drink them. The Sunday before he died I remember having a glass of Mountain Dew, a glass of Lemonade, and his bottle of water all beside him. He would say water, and I would hold the bottle and he would take 1 swallow. Then he would say ‘grape’, and I would hold the glass with the straw going to his mouth (THANK GOD, for bendable straws) and he would take 1 drink. He’d then say ‘lemonade’ and I would give him the straw for that. He’d fall asleep in between sips, but when I would go to take the cup away he would wake up enough to tell me ‘not yet’. The cold lemonade would always get him to whisper, “This is really, really, good.” I think it was the fruity taste that he loved and tasted so good at the time……. I remember his talking while he was sleeping. Some of the things he said were so cute and funny, and they would make us laugh when we really needed it. The one time he hadn’t been talking very clearly for awhile, but in his dream he was out somewhere with the band. All of a sudden he yelled, “BAND, Mark Time Mark.” We all just looked at him and laughed…… I remember the non-stop nose bleeds that were just like a faucet that wouldn’t turn off. The gauze that we would roll up and have in each side of his nose to try to stop it. He would be sleeping, but would keep raising his hand up to try to knock them out. I’d have Kayla & Adam sit by him if I needed to leave the room, just so they could keep his hands away from his face…… I remember not leaving the living room very much for 3 weeks. Even if he was just sleeping, I had to be in there by him…… I remember staying home for the first time ever on Thanksgiving Day last year, but it was okay because we were all still together……. I remember Stacy and Sean coming over the day after Thanksgiving to see Shane. There was a terrible snow storm that day and we had gone to Midland for what was Shane’s last transfusion there. The roads were so bad on the way back and we got home a lot later than we thought we would. Stacy and Sean still came and I’m so glad that they did. Shane was awake enough to talk with them a little while they were here. It was really the last good day that he had……I remember Shane feeling good enough, and awake enough that same night, that we could watch Red Green together. The really special thing about that was that it was the show that we had gone to Toronto to watch the taping of. I am sooooo glad that he was able to see it, and it still brought him a bunch of smiles…… I remember two friends from band coming to see him on Saturday. He wasn’t feeling very well, and sleeping a lot, so it ended up being a short visit. He did though, manage to stay awake long enough that night to watch all four shows of Red Green……I remember he and I missing our first ever “Extreme Home Makeover” show since the show started the year before (we even watched all of the reruns every week)…….I remember having a talk with Kayla and Adam on Sunday or Monday. Telling them that it was really important for them to spend some time with Shane. Even though he was sleeping, I knew that he would know that they were there……..I remember on Monday reading “The Kissing Hand” to Shane when it was just he and I (that is such a good book for anyone who has to be away from someone that they love, for any reason ~ going to school, moving away, going to the hospital, and even for what we were going through). I remember after the story was finished, kissing his hand, then putting my hand up to his mouth for my kiss. He was sleeping heavily then, but I know his kiss was there….. I remember just sitting on the floor on a pillow next to his bed, falling asleep and holding his hand all Monday night……. I remember early Tuesday morning and the struggles that he had….. I remember calling hospice right away and asking if someone could come and stay with us for awhile……. I remember telling Kayla and Adam that they really needed to spend some time with Shane before they went to school that morning (they had been going all along, and it really was the best thing for them to do up until that day). After they each sat with him for a little bit, they decided that they would both stay home…….. I remember Karin, our hospice nurse, coming over as soon as she got my message. She sat with us until Karrey, a new nurse for us (which made me so nervous, but she was such a God send), came, and she stayed with us the rest of the day. The only thing that I wish I would have been able to do differently that Tuesday, was to have talked to Shane more. He was sleeping heavily and his breathing would get really labored at times, but when Karrey would talk to him, he would get so peaceful and calm. It seemed like when I would start to talk to him his breathing would start to get labored again. It was almost like he was crossing that line between earth and heaven, then hear my voice, and try to cross back. I couldn’t keep doing that to him so after awhile I just quit talking. I just sat there and held his hand…… The rest I wrote about last year when he died….That special phone call from nurse Kim that came in when he took his last breath. That’s a phone call that I would have loved for him to have heard about. He always laughed when he heard that the nurses on 7 West were getting pregnant. Kim was calling to check on him and to tell him that she was expecting. Last week I got an email from her with a picture of 6???? (I forgot how many and I deleted it by accident) 7 West babies all lined up on a couch. What a cute picture, Shane would have LOVED it!!!! …….. I remember going to the funeral home and telling Kayla and Adam how cold the whole process of making the arrangements was probably going to be. I should have known better. Living with cancer for as long as we had, and Shane having the sense of humor that he did, laughter, and just smiles sometimes, has been something that we have always managed to do somehow. While downstairs at the funeral home in this huge room with every kind and color of casket that you could imagine, we separated to look at them on our own and pick one that we thought Shane would like. I found one, Randy found one, Adam showed us one, and then Kayla calls us over by her and shows us the one that she picked. It was all pink, inside and out. She said that Shane had told her that that was the color that he wanted. Thank you Kayla!!! It was definitely something that would have made Shane laugh, and it definitely did the same for us…… I guess the two most important things that I want to always remember from this time last year, is the sense of relief that I felt for Shane, that his fight was over, and how peaceful he looked when I saw him at the funeral home. I just have to keep holding onto those thoughts……..as always… One Day At A Time.
Tomorrow morning, weather permitting, I am going to take some balloons (Maize and Blue of course) out to the cemetery (Floral Gardens on Cass Ave.), and fasten them to something out by Shane’s bench. I’ll also have a sharpie and a pair of scissors out there for anyone that may want to just release a balloon to Shane, or even write a little message on a balloon and release it to him. He would love it !! Whatever is left at the end of the day we’ll just tie together and release all at once. I learned from experience though that if it’s too cold outside, or if it’s raining, the balloons will definitely go nowhere but down on the ground (ha, ha – it did happen). Tomorrow morning I’ll post on here whether they’re going to be out there or not.
Shane…… a year has gone by, but most of the time it really doesn’t seem that long ago that you were here. Not a day goes by that something doesn’t happen and I can hear in my head exactly what you would have said, or imagined exactly what you would have done in response to it. It always brings a smile to my face. Thank you sooooo much for that!!!!! I miss the way I could walk up behind you and rest my chin on the top of your head. I miss giving you a kiss at night. I miss watching all of your game shows, Home Improvements, Boy Meets World, yes, even Emeril, with you everyday (I still watch Red Green every chance that I can). Everytime I watch Extreme Home Makeover, you’re right there beside me laughing at Ty, Michael and Paul. I miss your voice, your laugh, your memory of things (boy do we miss that), and the shaking of your head in disbelief when something would happen around here. I guess mostly I miss your physical presence and seeing that smile that would light up your eyes. I know you are happy and I will hold on to, and try to focus on that, forever.....We love you Shane, and we miss you!!
THANKSGIVING MORNING ~ (very early)
The pictures above are from Thanksgiving 2 years ago. The “special” hat that Shane is wearing was made especially for him by Devyn (Child Life at the hospital). I think that it was from a bet gone bad, a bargain, or a bribe, I’m not sure which. With those two though, you never really knew what was up. As always, the picture shows Shane having a great time with life.....The two pictures below are from Thanksgiving week 11 years ago. It was the first time (ever) that Shane was losing his hair from the chemo that he had received that Halloween. We thought that it might make it a little easier for him if his friends, Sean & Ben, went with us to get his head shaved. We took a hat with us that someone had gotten him. It was black with his name on it in turquoise. He loved that hat and wore it all the time (until he realized that bald is beautiful ~ smile). The top picture is from just before we left. The bottom picture is from just after we got back. What a smile!!
Some news from our household this week..... Last Friday night around 11:00 as I'm getting ready to go to bed, the phone rings. I hear Randy ask, "Did you call the police yet?" Uh, Oh..... I change back into my clothes and come out. Both Adam and Kayla were gone at the time, but Adam was just down the road at the mall for a movie. Kayla had just left to take Mitch (boyfriend) home, but he only lives a couple of miles away......It was Kayla. Her and Mitch were stopped at the red light not too far from here. She was in the middle of telling a story when all of a sudden there's an SUV stuck in the trunk of her car with their head lights in her back seat. She got rear-ended bad. They became un-stuck and Mitch got out to see if they were okay. He started to go towards them and they spun around and took off. There was a lady a car behind the SUV that saw it happen and took off following the drive-away to get their license plate number. Poor Kayla.... she handled it quite well. I'm surprised she didn't chase after them herself. The police came and got their story and said that it was a female driving the SUV and that she was drunk. The lady that left to follow her had called 911 from her cell phone and was telling them where she was driving as she was following them. They got her a couple of miles away. We're minus a car again.....Ugh!!! What a night......... Adam had his sports banquet the other night. It was really nice. Coach Miller calls all of the boys up, one by one, and says a little something about them. I like that. When Adam went up he talked about how Adam is always in the gym working out on something (weights, practicing receiving hundreds of football passes....), he then said that his teammates voted him one of the captains for next year (boy, Kayla and I are really going to have to work hard to keep him grounded now - we don't let Adam get the 'big head' syndrome around here - ha, ha). Yaaaayyyy Adam!!
Even though this is our first Thanksgiving without Shane, and we miss him terribly, we still have so many things to be thankful for, here are a few……. That Shane’s cancer was found when it was back in 94’ (before it had spread too much)……That we chose Ann Arbor to go to for treatment (Shane really considered it his 2nd home)…… For all of the great nurses that we ever had over the years (we loved them all dearly)….. For our very special doctor, Dr. Yanik (and Dr. Quinn, who we also had for a few years waaaay back)……For all of the special Child Life People.....For the grade school that the kids went to, and all of the staff there (they always took such good care of Shane, and Kayla & Adam all of the times that Shane & I were gone)…..For Shane’s high school, I couldn’t have hand picked a better one myself for him…..For all of the very special families that we have gotten to know and become friends with along the way….. For Shane being in remission for the year and a half that he was….. For Kayla and Adam having so much patience, strength, and understanding towards everything that’s been dealt to them….. For Shane’s special friends, Stacy, Stacy, Diane, and Sean (they gave him strength (and someone to talk to online))……For our families, friends, co-workers, and strangers, for always being there for support and help…...For all of the new treatments that became available for Shane after he was diagnosed……. For all that Shane was able to do while fighting his cancer (band, graduation, college, just having so much fun with life…)……For all of the special trips that Shane, and all of us, were able to take together (Florida, Montana, Colorado, Washington D.C.)….. For Shane not suffering any more than he did at the end……For our two special hospice nurses that we were so lucky to have last year.... For all of the special Angel friends that Shane has with him now…..and definitely…… For all of the great memories of Shane that we will always have (also, for Kayla not getting hurt last week (Thank God), and for Adam's new title at school).
Have a nice day with your families/friends everyone!!
Wednesday, November 16, 2005 6:39 AM CST
Before I start with my entry, if you get a chance, please go to this site Rascal Flatts (Just click the speed that you want to see it at, also, my link isn't working quite right so you have to hit the back button to get back to Shane's page when you're done watching it) to see the video for the song Skin (or Sarah Beth). What a beautiful song full of so much meaning to all of our kids that fight cancer.
Well, November is definitely here (my calendar at my afternoon job still shows October though – it does help me in a small way). Right after I posted my last entry I was on my way back to school (my morning job), kind of looking at my mail as I drove (bad, I know). In it was a card with a postmark from San Francisco, CA. Hmmmmm, I really don’t know anyone in San Francisco. Shane was treated there once, but that was back in 1996. I turned the card over to open it, and on the back was the address from UCSF with the name K. Matthay on it. Man, did the stupid tears start to flow (I was in the parking lot by then thank goodness). Dr. Kate Matthay was, or is, the doctor that is pretty much the head of Neuroblastoma research (or she was back when Shane was diagnosed). She helped us with some of our decisions along the way, and she was there for us with a treatment for Shane to try back in 96’ that was only offered there, and one place else (I think). The outside of the card said ”In one of the stars I shall be living. In one of them I shall be laughing. And so it will be, as if all the stars were laughing when you look at the sky at night.” That is definitely a Shane saying. Inside of the card, the one side was signed by a social worker that had just started working at the hospital when Shane and I were there. She said that they had just recently heard about Shane. She also said that it was a joy for her to play with Shane back then, and to hear his mature 10-year old view of the world…… I’m sure he gave her a lot of views back then too. The other side was signed by Dr. Matthay. In 2001 when Shane started to progress again, I emailed Dr. Matthay and asked her, or told her that I was hoping that she had something that Shane could try again. At that time though there wasn’t anything out there that he qualified for. She had sent back a nice email to me back then, and said for us to let Shane do as much as he could, and to enjoy our time together. She knew back then that our time with Shane was starting to run out. I really think that she was always surprised at how long he was able to live with active disease. She said in the card that she was grateful for the many years that we had with him. I really do believe that we were so lucky and blessed because of that. Medically, he shouldn’t have been with us as long as he was. It is such a special card, coming at a time when I needed to be reminded of certain things.
Last week was a long week full of memories from last year. It was a year ago that Shane was receiving his last chemo at U of M (at the time we didn't know that for sure). I remember the problems that he had started having before his chemo was started. His pain, and the beginning of losing some feeling in his foot and leg. Those problems usually would go away by the first, if not the second day of chemo. That time they didn’t though. He did get some relief, but nothing like we were use to. By that Thursday I had started already feeling like this may be the last time that we would be going down there for chemo. If his symptoms hadn’t gone away by then, it was only going to get worse. On that Friday it was such a sad day for me. I remember walking around that hospital like I was trying to take it all in, remember everything that I could. The hallways, the familiar faces, the court yard outside that we walked through many times (the trees were soooo pretty that week with their fall colors and I went out and got a few leaves to keep), remembering how they light up the trees in the court yard every winter...... it was like I was walking around saying good-bye to it all. I went into the gift shop looking for something that I could buy that would be a reminder to me of such a special place, and of Shane. Inside at that time there were many angel things, and I bought a few. I have to tell you though, for some reason I never got them out of the bag and they are still upstairs packaged the way that they were given to me that day. The only thing that I remember buying for sure is a musical thing. On it there was a boy snowman and a girl snow'person' playing outside. Up above them is a boy snowman angel flying around. Of course I thought of Kayla, Adam, and Shane then. I think on November 30th I’m going to get that bag out and see what else is in there. The end of that week last year was also the famous “week from h#ll” for us. It was when our trail blazer was backed into the pillar at the hospital by the valet parker (poor guy, I still feel bad for him). When we ended up staying at a real DIVE of a hotel, and when we were running late getting to the “Big House” for our traditional football game (because Shane was feeling so lousy) and I was pulled over and given a ticket from Officer Knickerbacher (yes, that’s his real name). Even though that football game didn’t go like all of our other football games went, Shane was able to go for awhile, and that’s all that mattered to him.......On Saturday, this past week, I went down to Ann Arbor and went to the football game at the Big House. It was something that I really wanted to do. It was a tradition for Shane & I, and I had to keep it going. The atmosphere around that stadium is amazing on game day. The people walking around with their U of M gear on, the cars that are decorated, the booths that are set up selling things is never ending. I got there an hour before the game so I had time to walk around a little before going in. The friend that I was suppose go with was sick on Saturday, so I ended up going by myself, which really worked out good for me. I wasn’t really sure how it would be going in there without Shane. Everything went fine though. My “always” favorite part of the game is when the band comes running out of the tunnel. The energy that they send out in that stadium is unbelievable. That was the only time that my eyes got watery (when the band came out), and then I realized that Dennis was the drum major again this year (He had come to John Glenn with their previous drum major, Matt, to meet Shane after the tumors in his head were found in the spring of 2004). This year you never would have known that someone was actually suppose to be sitting next to me (the empty seat from my friend being sick). Shane and I use to always laugh about that. We would already be sitting cheek to cheek with the people beside us, and you would look down your isle and see two more people with tickets coming your way. No wonder they get so many people in that stadium, you’re only allowed about 10-12 inches for each person (ha, ha ~ maybe a little bit of an exaggeration, not much though). U of M was KILLING Indiana so I left after the band performed their halftime show (sorry Shane). As I was walking out I had to stop for a moment at the gate and remember all of the games that Shane and I went to (some of the pictures from above), and all of the fun that we had there. I want to tell you that the picture at the top with Shane and Mr. Miller & Ms. G. is one of my favorites. We would always run into people there that we knew. That year (98', when Shane was 12) we met up with Ms. G., Shane’s 6th grade history teacher. That also was the game that Shane met Mr. Miller for the first time. He ended up being another one of Shane’s favorite teachers when Shane got to the high school. Mr. Miller was also one of the pallbearers for us at Shane’s funeral. The picture below is from on our way out of the Big House last year. I knew then that it would probably be the last picture of Shane taken there. I love it. This Saturday ended up being a nice day for me at the Big House, a lot of good memories.
My little Kindergarteners are such a treat to be with everyday. They definitely keep my mind on the ‘here and now’ when I’m with them. This week was teachers conferences for Adam. It’s funny how quickly you can get through those when you only have 1 child that you have to see teachers for, instead of 3. Adam has a great group of teachers this year. I am really happy about that. Next week is the fall sports banquet. It will be nice to see everyone again since football ended. I think Adam will be getting his varsity letter then. We’ll have to wait and see. When Shane got his for being on the swim team his freshman year, he wanted a varsity jacket to put it on right away for the next winter. He LOVED that jacket!!..... Kayla already has 1 class that is over, and she has signed up already for her winter classes. My, she sure is growing up isn’t she. Her and I sure do miss Shane when it’s homework time. A little while ago she had an assignment in her government class about the different levels of the government starting with our township, going all the way to the national government. We knew the big positions like the township supervisor, mayor, governor, president, but we were having a hard time with all of the ‘little people’. We knew that Shane would have known what we needed. Poor Adam takes a lot of flack from us about that. He definitely dishes it back at Kayla though when it comes to math homework, and the fact that she can’t help him either. What a bunch.
Last week was the New York Marathon. In the marathon was a special team, “Fred’s Team.” That team is made up of special people who run to raise money and awareness for cancer research at Memorial Sloan Kettering Cancer Center. A part of their money raised goes directly to pediatric cancer research, a definite must. Dr. Kushner is on the team. Shane LOVED spending time with him when we went to New York for the Antibody treatment. They would sit and talk, and talk, while I would just listen and laugh. This year the team had another special member, Christi Thomas’ dad (Christi’s link is below). The marathon is a 26 plus mile run that takes you through, it sounds like, almost every part of New York. I can’t imagine the feeling Christi’s dad must have had running those streets and remembering their times there while Christi was getting treated. Plus running past the hospital itself, and finally crossing the finish line. What an accomplishment for him. Christi’s disease right now is stable. She’s currently taking Shane’s favorite ‘Irinotecan’ plus Temodar (sp?), which gave him such a good quality of life while he was on it. For Christi, it is giving her that, plus the chance to wait for other treatments to become available. YOU GO CHRISTI !! Also at the marathon was a young girl, and also a NB warrior, Carolyn. Her and her mother made up a large poster to hold along the route right outside of the hospital. On it were pictures of some of the kids that have been treated at MSKCC, and a big "Thank You" to Fred's Team. Shane's was one of those on that poster. What a special thing to do.
That’s all for now from here. Our computer has been acting up lately, so when I can get on (when it’s free, which isn’t very often), it takes forever to do the simplest things. Hopefully we’ll get it figured out soon. Some quick responses to a couple of questions/statements that have been made to me lately...... No, Kayla's bedroom is still not cleaned up, and yes, my statement in the last entry about me driving 80 mph on the freeway was a little low (ha, ha)......Thank you everyone for checking in on us. I know that Shane will be on the minds of some of you these next few weeks. I hope that the memories that you have will only bring a smile to your face, how can they not....Stay warm everyone!!
Sunday, November 1, 2005
The fall picture above is from 2003, when Shane was a senior. He was doing a weeks worth of radiation to his shoulders at the time. Everyday when we would be making our drive, as we would go over the Zilwaukee Bridge I would look to the right and see this. I thought it was such a pretty sight (There were so many more colored trees out there, but I wanted to get the church steeple in the picture). On our 4th day going down I told Shane that I was going to bring my camera the next day and take a picture of it because I liked it so much. He laughed and said, “Yeah, sure you are”. On Friday morning as we were going out to the car I had my camera and he wanted to know what I was taking it for (short term memory loss on his part I think). When I told him that I was going to pull off on the side of the bridge and take a picture when we got there, he laughed at me again and said that I would never do it. Sooooooo, as we were heading up the entrance of the bridge my usual 80 mph speed started slowing down and he noticed. His mouth just started going in the back seat, “What are you doing?”, “You’re really not going to do this are you?”, “You’re going to get a ticket.”, “You’re going to cause an accident.”, “Kayla would be so embarrassed.” (that was a good one). He went on and on. I jumped out (I was pulled way off to the side), ran around the car and took a few pictures, jumped back in, and we started off again. Shane was in the back giving me one of those looks where he would tip his head down and shake it from side to side. It was definitely the topic of discussion on his part when we got to the hospital. Someone would see him and ask how he was, he would say ‘fine’, but she needs to be checked into (pointing at me). Then he would proceed to tell everyone what I did. I LOVE the picture not only for the beautiful scenery, but for the happy, funny, memory that goes with it……Speaking of pictures, I think this week I'm going to have to threaten Kayla with posting a picture of her bedroom on here if she doesn't get it picked up soon. This is the worst I've seen it in awhile. Many years ago when they were a lot younger, Shane had Sean over and for some reason they needed/wanted something from Kayla's bedroom. Shane refused to go in (he said it was hazardous to his health ~ more so than his cancer at the time). Sean was the brave one that 'went in', but not before getting one of Adam's baseball bats (or something) first. We told him just to walk straight ahead, count his steps, get what he wanted, then back out the number of steps that he went in. Shane and I laughed so hard while he was doing it. Check back later this week, you never know, I may have her bedroom on here. Tomorrow night we go to the high school to see Adam get inducted to the National Honor Society. We are truly blest to have all 3 of our kids get this honor. It definitely is not always easy to get good grades in school, and it takes a lot of hard work at times with everything else that they have going in their lives.....Have a good week everyone!!
Monday, October 31, 2005
This use to be one of Shane’s favorite holidays when he was younger. He could always come up with the ideas for a different costume each year. The nurses use to always look forward to seeing what he had decided on. I think my favorite over the years were his Steve Urkel and Elvis costumes. He had sooooo much fun with both of those. Eleven years ago today is when Shane received his first chemo ever. I’m not sure how many of you know, or remember this, but Shane’s original tumor was found in August of 94. At that time he was staged at a 2 because the tumor was the only "definite" spot that showed up on his tests. The “special” Dr. that we had back then ("special" is being sarcastic, he wasn't Dr. Yanik, or anything like Dr. Yanik) told us that Shane had an 80 percent chance of survival, but strongly reminded us that we could just as easily be on the 20 percent side of those chances, as the 80 percent side. Once Shane had his surgery that removed about 90 percent of the tumor, we were told that the rest of it would die off on its own. Now, let me go back to the “definite spot” part. At the time of his first ever MRI we signed a paper for the hospital to run an additional experimental part of the test on Shane. All it did was add a few more minutes onto the 1 ½ hour full body scan (that’s a story all by itself). What they did was at the end of the scan they would clip a halo type looking thing around Shane and do one more scan. Back then, the scan that they did during that part would show a small “something” in his hip. His bone marrows, CT’s, MIBG’s, PET, everything came back okay, just the tumor would light up. We were told to take him home, and again, that eventually the tumor would just die off on its own (which is what was truly believed by everyone at the time). Scans were rescheduled for a month later just to check on that process. A month later we started all of the scans again. Each one came back with only the tumor lighting up, but much smaller this time because of the surgery. Then BAM, there came that MRI again with only the experimental part showing that small “something” that was now a little bit bigger. They were all stumped. We were so VERY blessed at that time to have our first doctor leave and move onto another city (YES!!!), and in came Dr. Yanik into our lives. What a difference. Since we had our first tests from after Shane's tumor removal, they now had a base line to start comparing everything to. The only thing we could do was to go home again, schedule test again for the next month, and see what was happening then. In mid October those tests were again done with the same results (the spot was a little bigger again), so Dr. Yanik decided to do Shane’s bone marrow test himself using some of the films as a guide. A bone marrow is such a “hit or miss” test. You can stick that needle in and not get any cancer cells, but they could be in a cluster just beside where that needle was. That’s why I never got too excited when Shane’s bone marrows would come back “clean”. I always wanted to wait for a couple of times of “clean” before I would get excited. Anyhow, Dr. Yanik’s bone marrow test finally came back “positive” for Neuroblastoma. That changed everything. He was now staged at a 4, which now made his chances go to a 30 percent chance of survival for 5 years. At that moment I took what I thought was the coldest thing ever said to us from his first doctor, and said to myself that we could also just as easily be a part of that 30 percent that survive those 5 years. That is what I lived by for the next 10 ½ years. Shane was scheduled for chemo right away the next week. Wow, it just occurred to me that Halloween also fell on a Monday back then. He was devastated. Not so much about the chemo part, but he had his Zordon (from the Power Rangers) costume all set, and was going to miss his party at school. I made some very quick phone calls to some of our neighbors and asked if we would be able to come Trick or Treating a couple of nights early so that Shane could dress up and be able to go. Between our neighbors, family members of our neighbors, and then our own family members, Shane was able to go to enough houses and get enough candy which made him happy. It was so hard walking into that hospital for that first treatment because he had no symptoms at the time. He didn’t have ANY symptoms EVER after his first initial ones back in August. Those symptoms even ended after the first day that his tumor was found. I just felt horrible knowing that what we were about to do was going to knock him down. Back then chemo was one week worth (5 days) of 5 different drugs given over different hours of the day. We would come home, leave everything packed, because within 4 days of being home he would have a fever and we would have to go back. That hospital stay was usually around 3-4 days. We would come home for about 1 ½ weeks and then it would start all over again. Now you know why we came to think of Ann Arbor as our second home. Shane handled his first course of chemo great, even being able to wear his costume and go Trick or Treating at the hospital. What a memory.
With this being the end of October, and November starting tomorrow, my mind has already been starting to race around (And not always in a good direction). Let’s face it, life can sometimes be very cruel. Just as you start accepting, or maybe dealing, or even maybe putting up with, the changes in your life, here it is, time for remembering our last month with Shane. I was so wishing that we could just skip the months of November and December. I plan on NOT changing my calendar at work. It will stay on the month of October until the end of the year, if I leave it on my desk at all (pathetic, huh?). I don’t think that I could look at that big thing everyday, watching the day get closer. I want to now share with you something special. Last year in the summer I started to go to a Caringbridge site for a then 9 year old boy named Connor. Connor had Rhabdomyosarcoma, another rare form of children’s cancer, and was also losing his battle. On Halloween last year Connor turned 10 years old. The next day, November 1st, Connor became a special angel. When Shane died, it kind of gave me a sense of comfort to know that Shane had someone like Connor up in heaven that he could have fun with. We all know that Shane loved being a kid. Connor’s mom and I exchanged emails recently and we found out that Shane and Connor both loved some of the same things ~ Pitch Black Mountain Dew, Scooby Doo, and some others. Connor’s mom’s last journal entry really hit home for me. What a strong mom and dad Connor has. If you get a chance, please go and visit Connor's site.
There’s not a lot of news around here. The football team lost the first game that I talked about in my last entry, BUT………. THEY DEFINITELY BEAT OUR CROSS TOWN RIVAL ~ THE GARBER DUKES!!!!!!!!! YAAAAAAYYYYY!!!!! On Friday they had their first playoff game. They weren’t playing their best, the team we were playing was playing better than their best, in the end we lost (very sad time). What am I going to do now every Wednesday night when we use to take turns hosting a “bring a dish to pass” tailgate party for the team and their families, and Friday nights when we they use to play?? Remember, too much time on my hands is not a good thing. Kayla is sleeping, going to school, working, homework, spending some time with Mitch (he watches her do her homework a lot ~ poor guy), then maybe once in awhile getting out of the house to do something fun…… poor girl, growing up isn’t always easy...... That’s all of the news from here.
At this time of the year I am going to try hard to focus on good things. Hopefully I can think more about the Novembers from the past, and not just last years. I know yesterday in church the tears started to flow just because of a song that they were singing that was one of Shane's favorites. I could picture him on my left side as always, the expression on his face when he realized what song it was going to be, and then him singing his heart out. I love the memories, but I hate the tears. I have to keep remembering..... One Day At A Time. Thanks for checking in and for thinking of us. Please will you wish strength to all of the other families that have lost children, or other loved ones, too soon.
Monday, October 10, 2005 6:38 PM CDT
I am loving this change of weather that we’re having. It is definitely football weather. Speaking of football, I have to tell everyone (if you didn’t already know), after 7 games John Glenn’s varsity football team is still UNDEFEATED. They’ve scored a total of 293 points, only allowed their opponents 25 points, and had 4 shut-outs. For being a junior, Adam is seeing a lot of playing time and he loves it. He lives for this kind of stuff. Our two toughest games are coming up, with our last game being against our BIG cross town rival. Wish us luck !! GO GLENN ! ! !
My visit to Ann Arbor a couple of weeks ago was a nice one. After lunch with a couple of Shane’s in-patient nurses (and the new baby ~ what a cutie, and such a good baby), I stopped into clinic. That was kind of a surprise visit because usually I call ahead to let them know that I’m coming. That was a real nice visit also. I then went up to 8th floor to see Devyn and say good-bye. What a guy he is, and such a fun person to talk to. I had forgotten in my last journal entry to write about something that Devyn did to Shane during one of the last times that Shane was admitted. He was in for pain, but his chemo had been started so he was feeling a lot better. We had walked down to the Child Life room at the end of the hall so he could use their Playstation. After being down there for about an hour we went back to our room. When we opened the door, the look on Shane’s face was priceless. While we were gone Devyn had gone into the room and saran wrapped Shane’s bed. Not just the bed really, but everything that was on the bed. His U of M pillow was saran wrapped to his sleeping pillow. The pillows were saran wrapped to the bed. Poor KoKo was saran wrapped on top of them, and then the head to the foot of the bed was saran wrapped. It was so amazing looking. Shane stood there with his mouth open for a little while, then you could see the light bulb going off as he figured out who did it. He just shook his head and started to laugh. The hospital is truly going to be a lot quieter.
Friday night I went to Oakland for their Relay For Life. The weather had already changed and I felt so bad for the ones that were sleeping outside overnight. They were going to freeze for sure. The reading that I did there could have been better. The wind was blowing so hard when I got up on the stage that my pages kept blowing, my hair kept blowing in front of my face, I didn’t think I was cold until I got up there to speak and my voice was kind of quivery. On top of that I kept forgetting to breathe where I had marked on my paper (yes, I had to mark it or I would have forgotten..Oh, I still forgot)..... other than all of that…… ha, ha. The Relay itself was really nice and it’s held at a good spot. So as it grows it will just keep getting better, and better. Thanks Diane for asking me. You did a great job!! On the way home on I 75 I saw an exit sign for Fenton. I couldn't resist. I took the exit and cut a crossed to U.S. 23 (crazy, I know). I went to Shane & mine's ice cream place. They have the biggest cones there. Yummmmmm!!!
I don’t have anything else really to say, so I’m going to end here with my little speech. When I was done reading it, and everyone took a quiet lap around the walkway, I was given a T-shirt and a Cancer Survivor medal on a ribbon. The medal is such a special thing because Shane was suppose to go there last year but he wasn’t feeling good. I know he would have walked the survivors lap with everyone had he been able to go. So to me, I got the medal for him, just one year late. Here now is my speech. Please don’t think too much about the beginning and/or the middle. The ending is what I think is the most important because Shane really would want us to keep living everyday as positive, and with as many smiles as possible.
Hello. I would like to share with you just a little of how cancer became a part of my life. But first, I would like to tell you three childhood cancer facts that you may not know.
1. Each day 46 children are diagnosed with cancer.
2. One in 330 children will develop cancer by the age of 20.
3. Although cure rates are steadily increasing, 35 percent of those children diagnosed with cancer will die.
Even though those numbers and percents seem small, they are very much a reality, and they are my reality. I found out that my son Shane had cancer on August 18, 1994. He was 8 years old, and it was 1 week before he was to start 3rd grade. His cancer was called Neuroblastoma. He was so proud of himself when he learned how to spell that. At the time of his diagnosis Shane was given a 30 percent chance of surviving 5 years. He and I learned early that there are 2 kinds of cancer patients. Those that will live their new life after being diagnosed full of negativity. And those that will greet each day as a new day, and be as positive as they can with the new life they have been given. Those that are negative fight everything about cancer (and who can blame them). They fight the doctors, nurses, anyone who may try to help them, the appointments, the treatments, the tests, and all the inconveniences that go with their new life. Because of that, they make themselves and everyone around them so miserable, and that is such a waste of precious time….. Shane was the positive type of cancer patient. He took things one day at a time. What may have happened the day before that was bad….. was old news. He would start each day as a new day, and he would enter them each with enthusiasm, showing the extreme ‘love for life’ that he had. He learned early that all of the crying or complaining that he may have wanted to do wouldn’t change a thing. He would still have cancer when the crying was over, and that there were still going to be things that he truly did not want to do, but that he would have to. Him realizing that, made his years of treatment so much easier for him to do, therefore making our part with his fight against cancer, so much easier for us to do.
Over the 10 years that Shane fought his cancer there were only 2 times that he asked the question “why me?”. I remember each time very clearly. Both times though I didn’t have the answer to his question. Maybe because it was the same question that I had, “Why him?”.……… Over the years Shane received hundreds of chemo treatments, and weeks worth of radiation treatments to his back, shoulders, neck, knees, ribs and head. He also received 100’s of blood transfusions and inpatient stays for fevers, symptoms, pain and side effects. All those things resulted in 1000’s of trips to Ann Arbor from Bay City. A 110 mile trip one way for us. I can truthfully tell you that at least 95 percent of those trips were done without a single complaint, and mostly a smile on his face. Ann Arbor became our 2nd home, and everyone there became our 2nd family. Over the last 3 years of Shane’s fight he was sent home on hospice three times. In between the first time and the last time though, he was able to accomplish so much, and fulfill so many of his goals big & small. He became the drum major for his high school band his Jr.& Sr. year. Sometimes marching with, and leading the band on crutches because of the pain caused by the tumor in his back, or the cancer in his legs. He was able to graduate with honors with his senior class in June of 2004. Something no one ever thought that he would be able to do. And his proudest moment was being able to walk through the doors of his first college class at CMU last fall.
He had been fighting cancer for so long at that time that it had become a way of life for him. I often wondered if he felt left out, or deprived in different areas of his life. He was never one to complain, or talk about his cancer in a serious way. It was almost as if he felt that if he didn’t talk about it, he wouldn’t have to think about it……..Through his years of being treated Shane missed out on so much. He once said that he wished he could have participated in sports. But he knew that with all of the time he would have to miss, that that would never be an option for him. In school he always seemed to be playing “Catch Up”. And because of his desire to get good grades, he spent much of his free time doing homework…It would have been so easy and understandable if he would have stopped caring about school altogether….The saddest loss for me to watch was the distance that came between he and some of his friends over the years. He spent so much time in Ann Arbor, and missed so much school at times, it was hard to keep some of his friendships going. His doctor use to ask him if he remembered a time when he didn’t have cancer. Shane would just laugh and say “not really”.
In September of last year Shane caught a virus. He was admitted in Ann Arbor late in the night and he wasn’t expected to live through the next day. Family members were called down….. It was the 2nd time in 6 months that a phone call like that had been made. Ever since he had been diagnosed at 8, we tried to shield Shane from some of the details and the prognosis of his cancer. Our reasoning was that we didn’t want him to truly know what he was up against. We often asked him if he had any questions, especially when test results were given, but he always answered “no”. Since he was 18 last fall, we had crossed that line into adulthood, and he now had to be told every detail. That was by far the hardest time for me over the last 10 years. Before our family members arrived Shane’s doctor came in to talk with him. He explained to Shane that his cancer had spread more, and on top of that he now had a bad virus. That his body was just so tired and wore out from the years of treatment, that he didn’t believe he would be able to fight the virus off. He then explained to Shane what a “Do Not Resuscitate” form was, and asked him if he would sign it. By the end of his explanation, Shane’s eyes were filling with tears. There wasn’t a dry eye left in the room. The only thing that I could say to him at that time was that I was so very, very sorry………Shane couldn’t sign those papers. To him that would mean defeat. He had fought so hard and for so long, he wasn’t ready to give up yet. Instead, what he did was sign a Medical Power of Attorney over to us. To the amazement of his doctor and the rest of us, Shane once again rebounded and was able to go home. The virus though had taken a toll on Shane’s body and he wasn’t able to return to CMU. That was such a hard, final decision for him to make, and in the end we had to make it for him. Once again he didn’t want to admit defeat……. From then on Shane tired more easily. He didn’t get the relief from his chemo that he use to. The last 2 years we had been using it only as a pain reliever and to slow down his cancer’s progression. He now also required more blood transfusions to help him get through the week. His love for life continued though, and he was still able to do some of the things that he loved.
As a parent of a child with cancer, I can’t find the words to help you to understand really what my life has been like these last 11 years. The feelings of guilt and helplessness were so consuming at times. Christmas time became such a sad time of year because you always wondered if it would be your last one together. It is so hard to feel like you have to take a lifetime of memories, and consolidate them into a couple of years.. months… days… or even hours. I have lost count of all of the special children that Shane and I got to know and care for over the years, only to have to say a sad good-bye to them because they had lost their battle. I feel that I have cried enough tears that would fill an ocean, and I can’t begin to tell you the number of bargains with God that I made....... My wishes and prayers changed over time from, “Please don’t let my child have cancer..... to please let his cancer go away..... to please let there not be a lot of progression..... to please let there not be a lot of pain..... to please let his pain be manageable..... then finally..... to please let him die in peace.”..... Sometimes this all just seems like a dream, that Shane ever had cancer at all. And then I look around and see the way my life is now, and it almost seems like a dream that Shane was ever here with us..... It is said that “When you lose your parents you are an orphan. When you lose your spouse, you are a widow, or widower. There is no name for a parent who loses their child, because it is just too unspeakable.”..... Some of the kids with the same cancer as Shane suffer so much at the end of their life. We were so very lucky that the end for Shane came quickly. Shane took his last breath at 4:26 p.m. on November 30th, 2004. I know the time, because one of his nurses that had been with us since he walked through the hospital doors for the first time 10 years ago, was calling to see how he was doing. That call came at the moment that Shane's last breath was taken. It was a moment that I will remember forever.... In true Shane fashion, he left us without saying good-bye, or talking about what was happening..... That again would have meant defeat to him.
For me now, there are signs of Shane everywhere, and they mostly bring a smile to my face. There are times though when I am caught off-guard and the tears start to flow. But my goal everyday is to wake up and be as positive as I possibly can, and smile as much as I possibly can. That is exactly what Shane did the last 10 ½ years of his life, and I know that is what he would want us to do. I would like to end this with a quote that I remember reading years ago (this may not be word for word), but it goes something like this....
"Of all the sad words from tongue and pen, the saddest of these is 'what might have been'."
I know, and I am so happy, for all that Shane was able to do during the last 10 years of his life after being diagnosed. But no matter how many years go by, and how old I get, I will always wonder ‘what Shane might have been,’ had cancer never been a part of his life…………Thank you for allowing me to share my story, and thank you so much for all that you are doing to bring awareness to cancer, especially children’s cancer. It is so under-funded.
Thank you again!!
That's it. A short summary of my last 11 years. It was kind of hard when I first started to write it a month or so ago, but as time went on it became more therapeutic. All I wanted to do was share a little of Shane's story and to make a 'small' statement against cancer. I hope I did that.
Enjoy the NICE, cool, Fall weather everyone!!
Saturday, October 1, 2005 4:00 PM HOW ABOUT THOSE WOLVERINES !!!!!!! What a game, AGAIN!! Didn't we do something like this last year?? I took a Michigan flag that had a windmill thing on it out to the cemetery yesterday. Have I mentioned that all summer long I've been battling the weeds at Shane's site. I REFUSE to let weeds grow there. Everytime I would go out there I would pull the weeds, sprinkle some more grass seed, and just leave whatever grass had grown. Let me tell you, over the summer not much grass at all had grown there. This week I went out and dug up the dirt a little and was going to put a couple of bags of dirt down that I had bought (it was mostly clay out there I discovered). I was then going to try throwing some more grass seed out there again to see if it would grow before winter. I ran out of time the one night so I was watching the weather channel waiting for more rain in the forecast before I did it. At noon today for the beginning of the game I went there and took a maize & blue balloon, plus a mylar U of M football balloon. Just as I got in my car to leave to come home, Michigan had already scored their first touch down. I LOVED it!! After I got home and Michigan had scored the second touchdown, I called Shane's Uncle Reggie (Randy's brother). I wanted to talk to little Garrett to see if he was watching the game. When no one answered I thought that was pretty strange. They're BIG Michigan fans too. Around half time the phone rang and it was Reggie. He had been out to the cemetery laying dirt and grass seed for Shane. I guess there were a few of us thinking of him today. He definitely would have loved this game, AGAIN!!! HOW ABOUT THOSE WOLVERINES!!!
Saturday, October 1, 2005 7:30 AM
KEEP YOUR FINGERS CROSSED!! SHANE, WE NEED YOU!!!!!!!! GO BLUE!!!
Monday, September 26, 2005 6:21 AM CDT
Oops, it’s been awhile hasn’t it?? The computer never seems to be free anymore. School is in full swing. I am loving being in kindergarten this year. They are so cute and can say the darndest things at times. It’s hard to be serious with them about something that they may have said, or done (that may not have been so good), when all you want to do is just laugh. I love being back at Shane, Kayla and Adam’s old grade school. The first week of school one of the teachers came up and said to me, “Welcome home.” That’s just what I needed to hear. I had the chance to go back to full time last week. For a couple of different reasons though, plus the fact that I think it’s really important for me at this time to really like and enjoy what I’m doing right now, I decided to stay at part-time and to stay where I am at. Those kindergarteners can definitely put a smile on my face daily, and I need that right now. I had one little guy come up to me the other day and ask me if his shoes were on right. When I whispered to him that he had them on the wrong feet and needed to switch them, he crossed his feet and whispered back, “Are they okay now??” What a crack up. Adam is finally back to school too (his 3rd week), and so far so good. I do believe he his my social butterfly (during class). Shane was definitely my social butterfly any other time. Kayla was mostly quiet during her classes in high school (I’m told). She was just into the note passing big time. She seems to have settled in quite well into her college classes. No complaints so far. I’m really glad that she got them all at the planetarium. It’s so nice to have them close with the way gas prices are. I was thinking the other day as I was filling up the Trail Blazer, I can’t imagine the money we would have gone through last year driving from Bay City, to Mt. Pleasant to get Shane, to Ann Arbor, back to Mt. Pleasant, back to Bay City, if the gas prices were then like they are now. You know I would have done it though. Anything to help Shane do what he wanted to, and could at that time.
The next couple of weeks are starting to fill up. This week on Tuesday, I’m going down to Ann Arbor to meet one of Shane’s nurses and her new baby. I’m looking forward to that. I am also going so I can see, and say good-bye to, one of the VERY special people that Shane came to know and adore in Ann Arbor. Devyn became one of the Child Life Specialists in the summer of 2000. Shane had just recovered from his 2nd transplant, and was into his 6th year of fighting cancer. Every summer he had always wanted to go away to camp for kids that have cancer. Every year I wasn’t willing to part with him for that long (ha, ha). I just never felt comfortable letting him go, even though they were always in Michigan, and not too far away from home. That year (2000), for who knows what reason, I decided to let Shane go to camp. Not only was that a big step for me (just letting him go), but the camp was in Montana, and he was going with someone (Devyn), whom I had never met, and had only started working with the hospital a little bit before that. WHAT WAS I THINKING!!! It turned out PERFECT!! Devyn and Shane formed a friendship that lasted from then on. At times when Shane was feeling his worst, Devyn could walk into a room and it would instantly bring a smile to Shane’s face. The two of them were always up to something. One time while walking back to clinic we saw Devyn sitting at a table on his break at the cafe there. When Shane and I walked passed the table again later, we noticed that Devyn had left a couple of packets of condiments on the table. Shane, being the ever cleanliest guy that he was (ha, ha), thought that it was his duty to return those packets to Devyn so he could properly dispose of them. We walked up to 7 West and found Devyn in the playroom. Shane took the packets and placed them on the desk in front of Devyn, giving him a hard time about leaving them lay on the table downstairs. He and I then went and got on the elevator to leave. Just as the elevator door was about to shut tight, in came flying those condiment packets with Devyn on the other side of the now closed door, laughing his head off. Shane laughed so hard, and it was then that it began. Every time Shane went to the hospital from then on, and thought that he might see Devyn, he would put packets of anything in his pockets. He said that he didn’t want to be caught unprepared. Those two would throw them at each other a crossed a room, hallway, over the wall in clinic…… They had soooo much fun catching each other off guard. In the spring this year I was holding onto Shane's letter jacket. Before I put it down I went through his pockets hoping to find a treasure, and I did. In one of his pockets was a couple of packets of salt & pepper. Hmmmmm..... I wonder who those were meant for. Devyn is leaving Ann Arbor this week. I can’t imagine the hospital without him. He brought so many smiles to so many people. This would definitely not be something that Shane would have liked at all. Here are a few pictures of the two of them together. You would never know it, but the time that each picture was taken, Shane was in a lot of pain and not feeling well at all. The 1st one with Shane in the wheel chair, Devyn is holding two packets of sugar over his head (spring 2003). The 2nd one is of the two of them together on Halloween (Fall 2002). Shane always looked forward to seeing what kind of costume Devyn was going to make himself each year (yes, he made that). The last picture is my favorite. Devyn and his Mini-me (Fall 2004). I had wheeled Shane to the 8th floor that day because he wasn’t able to make the long walk there. It was almost a year ago that that picture was taken. Watching the two of them together always made me smile.
In a couple of weeks I am going down to Oakland University to speak at their Relay For Life (again, am I crazy or what??). Shane’s friend, Diane, asked me in the spring if it would be something that I would like to do. I’m not usually one that likes to get up in front of people and talk. I was a lector at our church for years, but that was because our priest back then had asked me to and I could never say no to him. The kids would always laugh at me because on the Sunday that I would read, my neck would always get really red and blotchy looking, and I’d always have an upset stomach. This time I’m going to be speaking to college kids (young adults I should say), I can hardly wait to see what my neck is going to look like that night. I’ve got my speech all typed. I told Diane I have to stop looking at it because I keep making changes to it. I’ll put it on here next time I update. Homecoming is coming up for Adam then also. I love spirit week. The kids always got into that big time.
This week has had me thinking again about how lucky we were with how Shane’s cancer was to him (read further it will make more sense). A boy with Neuroblastoma, whose mother I met in New York while we were there, has become paralyzed from the chest down due to a new tumor that has formed in his back. He is just beginning radiation treatments, hoping that it will shrink the tumor enough that he will get his feeling back. I hope so much that it works for him. That was one of my biggest worries for Shane. Shane’s tumor in his back had spindled into his spine a couple of years ago. It was something that was always in the back of my mind because it was something that could happen at anytime. It’s almost like a double edged sword. Being paralyzed you have no pain, and sometimes I thought that that way would be better for him. But you then have no movement, and not much freedom. That would have been too much for Shane to handle I think. Please will you keep Jonathan in your prayers. Please will you also storm heaven with prayers for Christi. She is going this week for her tests to see if her new chemo is stopping, and/or making her cancers progression better. Her mother posted a link to a news story that was done on Christi in their hometown in Ohio. I’d like you to see the cute face behind the name Christi on TV. Once you get there, in the little blue box click on the video. What a cutie!!!
This ended up being a little longer than I thought it would be. I have a habit lately of thinking back to where we were a year ago from any given day. Today it was 1 year ago that Shane had caught the virus that really started him on his decline. It was also the day that he was given all of the details of his cancer, what it was going to mean in the future, and the explanation of what a “Do Not Resuscitate” document was (he never did sign that). He ended up beating his virus, coming home, and not looking back. At times I really think that he blocked out that whole conversation with Dr. Yanik because he just kept meeting everyday head on. What a guy. I am really missing him lately.
Thank you all for still coming to Shane’s site. Where would we have been without everyone’s support over the years. You are truly not forgotten. I guess on behalf of Shane, and all the other Wolverine fans out there, could you also maybe say a few prayers for this weeks "BIG GAME". What has happened to our team????? OOOHHHHHH....... I forgot to tell everyone that Kayla FINALLY got a job!!!! Yayyyy!! (Thank you so much Diane!!)
Enjoy the fall weather everyone!!
Sunday, September 25, 2005 (It's too late to be doing this - ha, ha) The computer and I don't seem to be getting along tonight so the update that I have will have to wait until tomorrow - hopefully.
Sunday, September 4, 2005 0:28 AM CDT
This update isn’t going to be a usual one. I said in my last entry that I wanted to dedicate my next update to someone very special in Shane’s life. That’s exactly what I am going to do. Not only did we always celebrate Kayla and Randy’s birthday on the 28th, but on August 29th for the last 11 years was another special birthday in our house. On August 29th, 1994, Shane was given the most special gift he ever received in his life. He was 8 years old at the time. He had just been diagnosed with cancer. Had just had major surgery to remove his tumor, was in a hospital far from home with a bunch of people that he didn’t know, and he was still in a lot of pain and recovering. After thinking about it a lot over and over, I decided that he was well enough that I could leave Ann Arbor late that Sunday night to come home so I could get Adam off for his first day of Kindergarten. Randy stayed in Ann Arbor with Shane, but let’s face it, he’s not “mom.” There were a couple of emotional phone calls through the night just for reassurance that I would definitely be coming back to Ann Arbor as soon as I could in the morning. It was a long night in both cities. After getting Adam on the bus, me with a movie camera in my hand breaking down when the kids’ bus driver asked me where Shane was, I headed to their grade school to update everyone on how Shane was doing and to meet his 3rd grade teacher (what an angel she was for Shane that year). While I was there I went to see Kayla’s 2nd grade teacher for the year, who was also Shane’s 2nd grade teacher the year before (and also ended up being Adam’s 2nd grade teacher a couple of years later). She handed me a large gift bag before I left to give to Shane. In that bag was a large, very furry, black monkey named KoKo. I knew Shane was going to love it. She had given the same monkey to Shane’s best friend, Sean, when they were in her class together in the spring and Sean had gotten hit by a car. I knew that Shane would love the fact that they each had one. From the moment that I gave that monkey to him they were stuck together. Through thick and thin, happy and sad, KoKo was like a form of security to Shane. Especially when Shane was younger the monkey went everywhere with us. We were briefly traumatized in January of 97’ when Shane had to go back to San Francisco for retests from the MIBG treatment that he had received out there (KoKo had already gone with he and I on the first trip). We were running a little late when we got to the airport in Detroit. Randy was going with Shane on this trip because it was just tests. We flew out of the car, through the luggage check in, and were almost to the security part when I realized that KoKo was still out in the van. I told them to go through security while I ran back to the van for the monkey. Guess what I found when I got there?? Not only was the monkey sitting in the front seat where we had left him, but the keys were also in the van with the doors locked. I just started to cry. There wasn’t enough time to get him out and I knew Shane was going to be upset. Not only was his mom not going with him, but his monkey wasn’t going now too. I promised him that I would send KoKo over night express as soon as I could get him out, that made him feel better. I stopped at a friend’s house in Detroit (Angel Chelsea’s mom) and she helped me box, wrap, label, and call Fed Ex for the pick up. KoKo was scheduled to be delivered to Shane by mid afternoon the next day in San Francisco. When he didn’t arrive as scheduled I started making phone calls. The box was lost!! I was panicking and Shane was getting antsy (I had to come up with some pretty good lies). It was quite cute also because all of his teachers at his grade school knew what was happening and knew how important KoKo was to him. I had many phone calls throughout the day asking if KoKo had been found. I remember just crying on the phone to one lady from Fed Ex explaining to her how Shane had cancer, how he spent so much time away from home in hospitals for treatments, how his mom was in Michigan, he was in California, and his monkey was LOST and was needed very badly by Shane. She was such a big help and KoKo was finally found and delivered the next evening (2 days late, but at least he got there). Thank God!! From that time on whenever we flew anywhere KoKo was put in a backpack and taken as a carry on. Every inpatient visit that Shane ever made to Ann Arbor, the monkey was right there with him. There was a little girl when Shane was first diagnosed that pretty much grew up her first 2 years in the hospital. Her parents were divorced and lived out of town so she was there quite a bit by herself. When she was in isolation from her transplant, Shane and I would sit on the floor with KoKo and play peek-a-boo with her through the window in her door for long periods of time. She loved it. When she was feeling better we bought her a smaller version of KoKo. She loved hers just as much as we loved ours.
(Jackie is now around 12 years old ~ a HAPPY cancer story)
KoKo was a source of entertainment up on 7 West. When Shane didn’t bring him in the room right away when he was admitted the nurses and staff would start asking where he was. When Shane was younger, taking a bath/shower was not on his ‘high priority’ list of things to do while he was a patient. One time after coming back from the playroom instead of finding KoKo on his pillow where we left him, there was a ransom note. It said if he ever wanted to see the monkey again, he needed to take a shower. Quite funny, and it worked. As Shane got older KoKo became more of a family mascot. He still went on every vacation with us (he made an excellent pillow). Shane and I laughed about how the monkey had been to more states in the U.S. then a lot of people. FL, Washington D.C., CO, RI, OH, PA, VA, NY, even Canada (there’s probably more but I can’t remember). The nurses and the staff at the hospital tried to get Shane to write a story about “The Life and travels of KoKo.” They said he (the monkey) had had so many adventures in his lifetime and that Shane would have a ‘Best Seller’ if he put them down on paper. Shane had always talked about doing it, but he never did get it started (it was probably too much like homework for him – ha, ha). Every trip to Ann Arbor Shane would be in the back seat. KoKo would start up in the front passenger seat with me (boy did he get some looks on the freeway), and then he would end up in the back with Shane so Shane would have a pillow to put his head on. Last spring when the tumors were found in Shane’s head he had been out of it for a few days, sleeping all day long. When he started feeling better once again we went through a period of “anti-showering” (we didn’t have a shower in our room so he would have had to go down the hallway for one. That would have taken away too much precious TV time ~ ha, ha). One morning after nodding off he woke up to find KoKo gone. In his place was this note…
(The bad spelling was on purpose)
Later in the day he had been sleeping for awhile again and when he woke up he found this note….
What a crack up (the comment about FL was because we were suppose to be on vacation in FL right then). At a time when the news was nothing but bad, he had his first good laugh……. For graduation last year, Shane’s old best friend, Sean, from 2nd grade, gave Shane his KoKo that he had gotten back in 2nd grade. The 2 monkeys together looked so funny. Shane’s KoKo’s fur was no longer furry (a dryer mishap many years ago), and Sean’s KoKo’s fur was still really furry. He loved the gift. Shane’s KoKo celebrated birthdays, got Christmas presents (that drove Randy nuts), and was really such a source of entertainment and such a member of our family (strange huh??). To Shane he was comfort. Something that could get him to forget what was going on around him, and something that he could hold onto when he needed a feeling of peace. During Shane’s last couple of weeks with us that monkey was right by his side through it all. Right with Shane through his last breath, with Shane’s arm wrapped around his neck and his chin resting on the monkey’s head. Karin, Shane’s hospice nurse, knew that I didn’t want Shane to be alone when he was taken from our house. She talked with the guys from the funeral home when they came to get him and told them to make sure that KoKo stayed by his side. Even for the short time that she was with Shane and our family she knew how important KoKo was. It was really hard when Shane died, for Kayla, Adam and I to let the monkey go with Shane, but we knew that’s where he belonged. We all took turns holding him and carrying him around one last time. Before Shane’s casket was closed I gave Shane a kiss, and then gave the monkey two. That was the rule, the monkey always got one more (smile). When it came time to design Shane’s bench for the cemetery we knew that KoKo had to be on there somewhere (Picture is in the journal history for May 30th). I can’t imagine going through those 10 years without him. One final group of pictures....
HAPPY BELATED BIRTHDAY KOKO !!!!! Thank you soooo much for all the joy and comfort that you gave to Shane over the years!!! We love you and miss you too!!!
This last week kind of flew by. I worked 3 half days at my new school, which is the kids' old grade school. I'll be in Kindergarten this year (as an aide) and I'm looking forward to it. I started in Kindergarten at Bangor Central 8 years ago. It's almost like I've come full circle. It will be nice to be back there....Kayla has been going to classes for a week now. So far, so good. She likes her classes and I'm glad that she took them off campus (at the Planetarium) with the way gas prices are right now. It's a lot closer to home. No car yet for her, but we've been looking.... Adam has had 2 football games so far (They haven't started school yet. Monday though is the BIG day) and they've won both - YAAAYYYY!!!! The day after the first home game Randy asked me if I had seen the 2 new bricks that were put out for Shane at the stadium. Of course I got right in my car and drove there. The one I knew about because it was from us. It turned out great. The 2nd one was a surprise. It was in memory of Shane from his grade school. What a gift, I loved it!!!
Please keep Jamie's family in your prayers. Jamie lost his battle against his cancer at the beginning of the week. Also, for all of the children & adults, who for some unknown reason have been chosen to fight this battle.
Thank you again for still checking in on our family and for thinking of Shane.
Sunday, August 28, 2005 I'm not going to do an update. I just wanted everyone to know that it's Kayla's, and Randy's birthday today. Our little girl (where did the time go) is 18 today. A drivers license, a big birthday, first day of college on Monday....... the poor girl is going to get stressed right out pretty soon. All she needs now is........ a job!!! By mid week I think I am going to dedicate the next journal entry on Shane's Page to someone that was very special in his life. Some of you may be able to guess who, some of you just couldn't imagine. Make sure to check back later in the week.
Sunday, August 7, 2005 8:28 AM CDT I’m sorry for the long time in between updates. I guess I thought if I didn’t have anything positive to write about I shouldn’t write at all. I have to truly say that I am very glad that the month of July is over. For some reason I took some big steps backwards during that month. I am such an anniversary person. Remembering the dates and times of things that happen, happy or sad. Little Paige’s mom, Sandi, that we got to know in Ann Arbor last year kind of said what I was feeling in her last journal entry. She also is an anniversary person and she wrote that sometimes the ‘anticipation’ of an anniversary date is almost more stressful than the actual date arriving. Paige’s 1 year anniversary of becoming an angel, and her 3 year birthday a few days before that, were the first of July. Paige’s funeral was on the anniversary of the day our first, very special friend from Ann Arbor, Chelsea, had died 8 years earlier. It was also the anniversary of Shane’s coming home from his first transplant 8 (9 this year) years ago. That day always seems to be a hard one for me. This July just had me thinking so much about last year in July. All the trips we made to Ann Arbor (Shane and I laughed last year and talked about changing our address to there because we pretty much lived down there last summer). Thinking about that made me miss those guys (everyone) in Ann Arbor again. Nurse Kim (one of his inpatient nurses) had her baby a couple of weeks ago. She was the one that called at the moment that Shane had died. She wanted to see how he was doing that day, and to let him know that she had found out that she was expecting. Shane would have loved hearing that. It is so hard to have the same people in your life for 10 years. To get to know and become friends with them and their families, spend holidays with them, and then in a quick moment it’s all changed forever......Last year in July was the going away party for Shane’s band teacher and her husband, he adored them. We were also trying to truly figure out if Shane was going to be able to go away to school. A couple of weeks ago I was at Delta with Kayla helping her do her paper work for registering for classes. I kept thinking about Shane, our trips to CMU to get him signed up and everything arranged, and how he was so looking forward to it all. A friend of ours’ son was away a couple of weeks ago at CMU for drum major camp. I just couldn’t seem to get that out of my head that week. Remembering 2 years ago when Shane went and the fun that he had. My Trail Blazer died in the middle of rush traffic on a Friday night a couple of weeks ago. That by itself was fine to me (things like that just don’t get to me anymore). What got me going though was that it was something computer-wise and I was afraid of losing some messages that Kayla had taped on this recorder in there for Shane. They use to always make him laugh when he would push the button to listen to them, or if he was in the back seat not feeling good and I would push the button to play them they would make him smile (the car is fine and the messages weren’t effected). Then Randy mentioned maybe putting it up for sale……. I’m not ready to part with that vehicle yet. It’s one of the places that I still have a lot of memories with Shane, around 60,000 miles worth really. It was just a hard month altogether. I’m "anticipating" that some of August is not going to be easy, and I am already afraid of facing the whole end of the year. I have to REALLY remember, “ONE DAY AT A TIME!!”
Saturday, July 16, 2005 1:28 PM CDT YYYAAAAAAYYYYY for the NHL being back!!!!!!!! Shane would be so happy about this. Adam and I both said right away though that he wouldn’t be happy about Dave Lewis not being back for the Red Wings. What makes that disappointment better is that Shane’s favorite captain, “Stevie” (as Shane would call him), is hopefully coming back (Shane better be pulling some strings for him and Kocur (his other favorite Red Wing)). The picture above is from our trip to Toronto last October. Not only did Shane get to see the taping of his favorite show RED GREEN, but he also got a chance to walk through the Hockey Hall of Fame and see the Stanley Cup close up. He loved every minute of it!!
Please will you also add Jamie to your prayers. His mother Kelly is the person who has dedicated a lot of her time to the web site listed below (Beebo's). It has been a source of comfort to sooooo many people. It is so nice to be able to get in contact with other families that are experiencing, or have gone through the same thing as you. Some kids lately with Neuroblastoma have relapsed and died so quickly, that Kelly didn't have the chance to move them from NED (No Evidence of Disease), back to being a Warrior, before they became an Angel. Her son Jamie right now is still listed as NED on his site. Sadly, he is in his final stage of life, but is still fighting hard. Please will you also remember to keep Christi in your prayers.
Saturday, August 20, 2005
Well the last couple of weeks have gone better (Thank God!!). I’m not sure what happened in July, I’m just glad that it’s over. Our Relay For Life was last week down by the river. It is always so nice down there at night when they light all of the luminaries up. Adam wasn’t there the whole 24 hours because of football Saturday morning, but he did get in around 18 hours. He came home after football, grabbed some clothes, a sleeping bag, and took off. I asked him before he left if he needed a tent and he said he would probably just stay up all night anyhow. He did. At around 8:30 Sunday morning I heard the car pull in and he came in saying that he danced and sang karaoke all night long (when he wasn’t suppose to be walking). I guess he threw his sleeping bag on the ground at one point to lay on, but thought he heard some kids goofing around by him so he thought it was safer (smile) if he just got up. Saturday night when I went down I was walking around and I would see a luminary bag with something U of M-ish on it. Then looking closer I would realize that it was one that someone had made for Shane. There were quite a few down there for him really. Shane’s two cousins each made one for him too. One had a lot of pictures of him on it with a lot of the things that Shane loved (we all picked the same picture), the other one had some pictures from Shane’s favorite show “Boy Meets World” on it, plus other stuff. He would have loved them!! I had gone down in the afternoon to take our bags (we work best under pressure ~ Kayla was the only one that had hers done early) and I was so glad I did. On the way back out to my car I ran into Shane’s friend Steven (the real tall friend as people refer to him). He was just leaving also and I got to talk to him for a little while. He use to come over to see Shane and they would sit and play on the Play Station for HOURS. Sometimes I would just lay on the love seat in the living room and watch them and laugh. Shane and I called Steven our U of M buddy. The last few years he would go with us down for a game when we went. They would sit and talk on the way down and they always made sure to remind me that, “Whatever happens (or is said) in the van, stays in the van.” We use to have a lot of fun on a game day. The one day I remember we went to a football game in Ann Arbor, and from there I had to drive them up to Traverse City for a conference that they were having up there for Student Council members. That was a crazy day, but it was during the fall colors so it was really a pretty drive.
This past Thursday (the 18th) is, and always will be a special day for us. It will be one of those anniversary days that will be in our lives forever. For me this past Thursday was a good day in so many ways, filled with memories of the last 11 years. Shane’s primary tumor was found 11 years ago on the 18th while we were on vacation in Ohio. Obviously that day was not a good day. I remember it all so clearly like it was yesterday. It was a day that would change our lives forever. Every August 18th after that though, I would wake Shane up with a kiss, and a “Happy Anniversary.” You may be wondering how they could be “Happy” Anniversaries. It’s because every year that we could say ‘that’ after his diagnosis, it was definitely a “Happy” Anniversary. He would always laugh and say “Thank you very much.” This past Thursday started out in the BEST way………..BIG drum roll please………. Kayla got her license. YAAAAYYYYY!!!!!! She did it!!!!!! She and I have been spending sooooooo much time together these past couple of weeks getting her ready for her test. Every morning before I would go to work she would drive me around. Every night after work she would drive me around……… I told her Wednesday night when we were done driving that I didn’t want to see her for a month after she got her license. Waaayyyyy too much quality time together lately (ha, ha). She agreed, and I think even added a few more days to that. At first I thought the test giver (a guy) was going to make her a nervous wreck. He was very by the book. He loosened up after a little bit, which loosened her up a little bit. I had to sit behind her during the driving test. He said that "I" passed all of her left hand turns (ha, ha ~ I was always checking her blind spot ~ we won’t say how many Kayla passed). He then asked her why she waited until she was 17 years and 355 days old to get her license. I think she said that she was getting it now because she didn’t have a ride to school in a couple of weeks. It was quite funny. Now we need to find another vehicle………. After her test I had made plans the week before to go down to Ann Arbor one more time before school started. I didn’t intentionally plan for it to be on the 18th, but when I called down there that was the date that the most people (nurses, staff) would be there to see. I didn’t even realize until a couple days before that they were the same day. From the time I left our house to go there it was a nice trip. No tears, no road rage, no big construction back ups…. just a very nice drive with a lot of memories. Looking around while driving down it amazes me all the things that Shane and I saw built over the years. Businesses, sub divisions, huge houses, roads…… so many changes along the freeway over the years. We use to laugh and tell people that Ann Arbor (the hospital) is only 5 turns from our house (it really is), plus 110 miles one way. Once I got there I got to see Shane’s clinic nurses. His one nurse came up to me and gave me a hug and whispered in my ear asking me if this was his anniversary of diagnosis. They know us so well there. I went up to 7 West and saw his nurse, Kerri. Back in the fall I had ordered these ornaments that are shaped like a triangle (a pewter type look). The tip of the triangle has a tiny star hanging from it. The words underneath are, “Perhaps they are not stars, but rather openings in heaven where our loved ones shine down to let us know that they are happy.” At the bottom of the triangle are a few small trees and houses. The first time I saw it I thought of the nurses and doctors, and all of the kids that they have gotten to know and had to say good-bye to. I ordered one for them to hang on the windows of the office in pediatric infusion, one for them to hang in the nurse’s area up at 7 West, and one for Dr. Yanik (and one for me). On the back of the three I had engraved “Love Always, Shane & KoKo.” I finally remembered to take their ornament to them this trip. While I was at the hospital I found out some news that Shane would definitely not have liked. Brooke (Shane was always my speller of names for there. He would tell me it’s Brook without an “e” (or with), or Kerri without the “a” or “y” and with 2 “r’s”. I’m really bad at that), who has been in clinic for a long time and takes the kids blood pressure, temperature, stuff like that….. will be done next Friday. Her classes at U of M don’t work out with her work schedule. She may though, get a position on 7 West working nights (that would be great!!). She would get teased (Shane being one of them) about how some of the older boys that get their chemo there, wanted her for their Make A Wish. She has a big heart. There was another little bit of very disturbing news that Shane would have hated, but I don’t want to say anything yet about it because I’m not sure if it is too soon to tell. It would have crushed him though if he was still going down there. After visiting there a few of us went out to eat down on Main Street. It was a restaurant that Shane and I had walked by many times but never went it (he was always faithful to BD’s Mongolian Barbeque). You walk upstairs and eat outside on the roof. You can sit and watch the people and the traffic out on the street. It was very nice. I ended up staying quite awhile and not getting home until around 11:30. I’m not quite sure why, or how, but the drive back was tearless, which is a first for me since Shane died.
This week is the first football game of the season for Adam. He’s on varsity this year and he is really looking forward to Friday night. He has such a good group of guys in his grade that he hangs around with. They are all pretty much in some sport throughout the year, and they do really well with their grades. We’re pretty lucky with him when it comes to that area. Kayla has one more week before school starts. We went and got her books a few days ago. Now we need to really find her a car. There’s already been a little problem over who should get the one extra car that we do have, and on what night. AHHHHH!!!
Please, please, please, remember little Christi in your prayers. Her tests last week showed new cancer in areas from head to toe. She will be starting 4th grade on Tuesday. As of right now her parents haven’t decided on what treatment she will be doing. She is on a few different drugs (Irinotecan for one) for right now until they decide what to do. I am hoping with all of my heart that this is just a bump in the road for them.
Thank you for still checking in on us, and for still thinking of Shane. If you live in the Bay City area, for now be on the look out for a black Grand Am with a blonde female driver. If the color and/or the make of the car changes, I’ll be sure to let you all know (shhhh……don’t tell her I wrote that).
Our family reunion was today. This was the one that Shane always looked forward to golfing with my brother. He was very determined to not miss it last year and he managed to get up for an 8:00 tee time (that’s waaaaaay before his usual noonish wake up time), golf nine, and sit through a very hot outdoor get-together/meal after. Other than some sore arms for a couple of days after he really did good last year. Today’s reunion went okay. It was a nice day to sit outside and see how everyone’s year went. Before Kayla and I left to meet up with the guys I ran one of Shane’s U of M golf balls from his golf bag out to the cemetery. I thought it was an appropriate thing to do (smile). On Monday Adam “OFFICIALLY” starts football. He’s excited and really looking forward to it…. BOYS!! Kayla seems to need to do things at her own pace. What that really means is that she still doesn’t have her license or a job. What am I going to do with her????? On Saturday is our Relay For Life. Adam is on the team for the high school and I plan on going down there sometime. It is so nice and peaceful there at night down by the water. When they light all of the luminaries up, it is just an unbelievable sight. School for us is still a good three weeks away (the kids anyway, I’ll start a little bit before that). I’m looking forward to being with the little kids again at the grade school. I plan on keeping my other job too, it’s important for me to keep busy.
I know this hasn’t been a usual journal entry for me (more somber than usual). I’m finding that I’m pretty good at running away from things for awhile, then out of no where it catches up to me and hits me like a ton of bricks. It definitely caught up to me in the month of July. Will you please keep sending those prayers to Christi , and all the other kids that are fighting so hard. I really believe it helps.
Enjoy the rest of your summer everyone!!
(Shane must have pulled a couple of strings because “Stevie” is back with the Red Wings for another year. (What happened with the strings for Barry and Joey Kocur though buddy??))
There’s not a lot of news here. Summer is quickly going by. Baseball is over. Kayla is starting to drive more with me (fun, fun, fun). My brother made a deal with her that if she didn’t have her license by our family reunion/golf outing, that she would have to be his partner this year. Shane was always his partner and they took great pride in the fact that they came in last (or close to it) every year. They even made up t-shirts a couple of years ago that said “We suck and we’re proud of it.” The deal definitely motivated her. The 4th of July was a little hard to face. That was one of those holidays where we have traditions (those darn traditions) that we always do. I really was not planning on going down to the fireworks this year at all. I guess sitting on our usual hill staring up at the sky for an hour was not something that I thought I was going to be able to handle very well. At the last minute (1 hour before they were to start) I decided that if I didn’t go, I might regret it. It was pretty nice really. Shane’s cousin Brooke (7) sat on the ground by me. Every year during our fireworks they set off a few that form huge smiley faces in the sky. Every time they would go off Shane would say “Have a nice day.” Also, every time they would go off Shane’s Uncle Reggie (Brooke’s dad, Randy’s brother) would never see them and say that we were all crazy. Well this year the fireworks had been going for awhile and we hadn’t seen any smiley faces. Brooke was sitting on my lap saying that we just HAD to see one because that would mean that Shane was happy. Uh oh, that’s definitely not what I wanted to hear (thinking that we might not see one this year). So then I started thinking, and hoping, and praying, please let’s see at least one smiley face. Finally after awhile about 3 of them went off. One went off sideways, which Brooke and I thought was funny, but it was definitely a smiley face. Randy’s sister was saying “have a nice day”, Reggie was all excited because he finally saw one, and Brooke was on my lap saying that it definitely meant that Shane was happy. To top it off they then were sending off these huge double outlined red hearts in the sky. Brooke then said, “See, Shane is sending us his love now.” That was just what I needed to hear. I’m glad that I went.
Before I end this I thought I would put the pictures of our tattoos on (hopefully this works)
Kayla’s (on her lower back)
Adam’s (on his left arm)
Mine (on my left ankle)
We’re all happy with them. Half of Kayla’s green star disappeared when hers healed (very strange) so she’s going to go back in to get it fixed. Her large star was suppose to have bright blue around it but the guy forgot and there’s not enough room to do it now. She’s going to instead add a small bright blue star down at the bottom. They do look a lot better in person.
Before I end I would really like to ask that everyone that comes here and checks on us, if you would really do some heavy duty praying for some families. Not just for the families that have lost children recently (there have been so many). But for the families whose kids are in the final stages of their lives. The families whose kids have relapsed (there have been a few lately), and for the families of the kids whose cancer has progressed. The Thomas family recently found out that Christy’s cancer has progressed after being minimal and stable for a very long time. They do have a game plan, and I am praying so hard that it works for them again. Even though I have never met this special family in person, we have exchanged emails over the years. Shane came to know them fondly as the “Evil Rivals.” They are proud Ohio State fans, need I say more. Please will you keep all of them in your prayers.
Thank you for checking in on us. I hope everyone is enjoying their summer!!
Wednesday, June 29, 2005 5:57 AM CDT I had to get those pictures back up at the top. I was starting to miss them. The last couple of weeks have been filled with seeing a lot of old friends. It seems like every graduation party we went to there was someone there that we hadn’t seen in a long time. I was able to sit and talk with some of Shane’s friends for awhile. Stacy at her sister’s party, and Diane at her sister’s party. It’s always good to catch up with them. I also ran into a couple of his teachers at different parties, it was all really nice. At our church they have the kids that have graduated that year wear their caps and gowns to one mass. It was Kayla's turn this year. It made me think of last year with Shane up there with Sean and Ben (his best friends from grade school), but it was a good memory. Still a lot more smiles than tears, for that I am so truly grateful. Sean and his girl friend, Shelby (also from Shane's class), stopped over last Sunday night. Back when they were in 6th grade their class buried a time capsule in the court yard of the middle school. They tried to find it last year before graduation, but couldn't because the marker had been removed over the years. The one teacher that knew where it was was was out sick the last few weeks then. This year at the end of the year I went and talked with the teacher and her and I dug it out the week after school got out. There was quite a bit of water that had gotten inside, but there was still a lot that could be saved. Boy did it smell!! Shelby was their class president, so after everything had dried out I boxed it up and they came to get it. Some of the kids had written stories to put in, some had written a little about how their 6th grade year went. Back then making the lizards out of the beads and friendship bracelets out of string was a popular thing, so there were quite a few of those in there. Some kids didn't put as much effort into what they put in the capsule and just removed their wrist bands from their last field trip that year and stuck those in. Out of all the things that I listed above, what do you think Shane put in???? Yup, his wrist band. That was so Shane.
I mentioned in my last entry that Kayla, Adam and I did something for Shane. This is something that I have wanted to do for years but just never did. Every year we would go to Cedar Point with the kids. Every year at one time or another I would just sit on a bench and people watch (Cedar Point is such a good place to people watch). While watching people go by I would see the most amazing tattoos and always get the urge to get one (Angela, if you’re reading this, Christi maybe having these same urges when you go – smile). Well that’s what we did. Kayla has wanted one for a little while, and Adam brought it up in the fall when a couple of guys at school got one. We each wanted to get something (?????) and have Shane’s name put on it. Kayla ended up getting in the middle of her lower back a hollow star (not real big) with Shane’s name in it. Then a smaller bright pink star up above to the left, and a bright green star (smaller also) down and to the right of the bigger one. She put 86’ and 04’ on each side of the bigger one. For some reason she lost half of the coloring in the green star when it healed so she has to go back sometime and get it filled in again. Adam got a real nice looking cross on his upper arm. It has a double outline to it so it kind of looks three dimensional. The picture that he got the idea from was all filled in, but he decided to just keep his as an outline. He was going to have Shane’s name written on the inside of it, and then have the years put on each side of it. We started thinking about it though and decided that it probably wasn’t a good thing for a guy to have a guy’s name written on his arm (smile). He ended up just having Shane’s initials put inside it with 1986 and 2004 going up and down on each side. His isn’t really that big either. Mine, well I’ve always liked this picture since I saw it for the first time years ago. One of the boys that I use to work with at the middle school use to doodle a lot during class and he would draw a heart with wings coming out from each side. He would then add on a lot more, but the heart with wings was always something that I liked. Down on my left ankle I got a darkish pink heart with light yellow wings. Above it are the outline of two blue clouds. In one cloud is Shane’s name, in the other cloud is KoKo’s (I couldn’t help it). On the bottom of each side of the heart is 86’ and 04’. I love mine. It’s not too big, it’s something that I’ve wanted to do forever, and it’s Shane.
Yesterday I took the day off from work and went down to Ann Arbor. I met one of Shane’s inpatient nurses for lunch. Kim was his nurse that called the moment that Shane died. She was calling then to let him know that she was pregnant because she knew he would get a big kick out of that. At that time his other inpatient nurse, Kerri, was expecting also and due very soon. He use to say that when there was a few of the nurses expecting at the same time that there must be something in the water up there that was causing it (ha, ha). Kim is due in a few weeks so we thought we should get together before her baby is born. From lunch I ran up to the hospital to see everyone else. I was finally able to see his other inpatient nurse, Kerri, this time. She hasn’t been back too long from having her baby. Kim and Kerri were always such a source of strength for Shane and I when he would have to get admitted. Those admits the last couple of years were always for bad things, pain, progression, his virus in the fall that he wasn’t expected to make it through, but those two always could make him smile, and make me feel safe. It was always such a comfort to walk in there in the middle of the night and see his familiar night time nurses, and wake up to more familiar faces for the day. He had been going there for over 10 years so there weren’t very many still there that we had started with. I hadn't talked to Kerri since before Shane died. It was really nice to see her and pictures of her new baby. She did okay talking with me until she saw my tattoo and then she got teary-eyed (I really think that it was seeing KoKo's name on there that did it ~ her and KoKo had a "special" relationship). I give those guys (all the nurses & doctors) so much credit for what they do everyday. I think about how many times they've had to say good-bye to children that they've gotten to know. That has to get so hard at times. Yesterdays visit with everyone was something that I really needed. Shane and I pretty much lived down there last year and I can only go so long before I start to miss them.
I have to show you our new favorite T-shirts.
We got these in the spring and I love them. The day they came in the mail was the day that our friend, Erica, from Kayla’s grade died from her cancer. Kayla, Adam, and quite a few of Kayla’s friends, all wore them for the first time on the day that the kids at school were finding out that Erica had died. It was kind of a bold statement for Erica, Shane, and all the others who fight cancer everyday. I wasn’t sure how the shirts would be received at school by the adults, but they took the chance and I told them not to be surprised if they were asked to change. Clothes at schools these days (and I should say lack of some clothes (short shirts, short shorts)) can be so controversial. I’ve definitely seen worse than “Cancer Sucks”, but you never know. Kayla and Adam did okay with theirs and wore them a few times before school got out. Kayla had a couple of friends that were asked not to wear them again, and one of Kayla’s friends brothers wore his to the middle school and was told that they liked the shirt, but asked him not to wear it again. I guess I understand. We still wear them when we’re out and about and they draw second looks and always a good comment. It’s a statement against cancer and I’m all for that.
Randy and Adam left yesterday for football camp over at CMU for a few days (Randy is helping as a driver and around the camp site while they’re there). Adam is down to not quite two more weeks of baseball games (wow, what am I going to do at night then??). Kayla, well she’s funny. She definitely keeps us going around here. She doesn’t have a job yet, and she’s still not driving. What am I going to do with her?? I guess, really, I know what I’m going to be doing with my free nights soon huh? We still miss Shane terribly. The quietness in the house sometimes is so overwhelming. He was such a talker. After my visit in Ann Arbor yesterday (I did stop for our usual Strawberry Cheesecake ice cream cone in Fenton too on the way home), it helped me to remember again how lucky we were to have Shane with us for 10 years after his diagnosis. There are so many kids that only live a couple years after being diagnosed with Neuroblastoma. We had Shane for 10 great years after, they were such a gift!! Thank you, always, for still checking on us and for thinking of Shane.
Thursday, June 16, 2005 I wanted to let everyone know that Shane has another special friend in heaven with him. Jay Barnett's long fight against NB ended yesterday afternoon. He reminded me of Shane so much. Whenever we were in NY you would always see Jay all over the RMH. He was a guy always on the go. Just like Shane, I don't know how many times Jay and his mom were told that the end was near and there was nothing more that the doctors could do for him. But Jay would have other plans, and would bounce back and continue fighting. Please will you say a prayer for his mother Virginia, who has known nothing but cancer and living in NY (until recently) for the last 3 years. She is going to have such a void in her life now and will need strength ~ www.caringbridge.org/md/jaybarnett ~ (I'm sorry caringbridge, but I know Jay's mom is so proud of Jay and all that he accomplished that I know that it's okay for me to print his link).
Monday, May 30, 2005 2:56 AM CDT This weekend has me thinking a lot about a lot of things. First, definitely our trip last year to Washington D.C. It was a trip that in the spring last year we never thought that Shane would be able to make. He would have been crushed. They had put in so many extra hours practicing for their concerts there, had done so many fundraisers, if he wouldn’t have been able to go it would have truly been the worst thing to him through all of his years of fighting his cancer. Even though the trip was a major bust (98 percent of everything that they were scheduled to do they couldn’t for one reason or another), and he was so totally exhausted by the time it was time to leave for home, he wouldn’t have missed it for the world. To listen to him tell the story to people (over & over & over…) was quite comical. After Shane died one of his doctors sent me a card saying that he enjoyed Shane’s stories about his band trip to D.C. and how he seem more perturbed about a crazy schedule than having a life threatening cancer. That was so true. This weekend also has me thinking back to Memorial Day weekend 2002. Shane had just gotten out of the hospital from his first big bout of pain. He was very determined to go camping up north to Higgins Lake with family and friends. We did get to go, and he being the bullheaded guy that he was (and not wanting to be different from the others) ran out into the VERY cold lake fully clothed to help drag his sister out into the water. Despite the rain and cold weather that weekend he had a lot of fun. Finally, today while I was day dreaming at church for a little bit (I know, not good), I was thinking about all the Memorial Days in the past years and how every year I had prayed, and begged, for just one more year. I remember last year, and having the feeling of really knowing deep down then that there was probably not going to be anymore extensions. All I could do then was to pray for it to be as peaceful as possible. It is so hard to believe that it has been 6 months today that Shane was last here with us. It just doesn’t seem possible that it has been that long. Thinking back to his final days, I really think that my prayers from last year were answered. I will always be so grateful for that. Below is a picture of Shane’s bench. I think it turned out great (I wish the “M” was just a little bigger though)!!
Tuesday, May 24, 2005 5:50 AM CDT Graduation day was really nice. The weather was perfect. Cool inside the gym, sunny and warm (almost too warm), outside. Kayla’s class was smaller than Shane’s. By the time some of them were done almost literally running to their seats, or up for their diplomas, it was all done and cleared out completely by 3:00. Not bad for starting at 1:00. Kayla was one seat away from her old best friend, Markie. They are like ying and yang together, and even dressed like ying yangs (by accident) for their senior awards night (Kayla ~ white skirt and pink top, Markie ~ pink skirt and white top. Quite funny). I got there Saturday an hour early so I could get a good seat. As I was watching people come in and looking at the gym floor with all the chairs lined up, I saw the seat that Shane was sitting in last year. What a feeling that was. Thank God people were really starting to file in by then and my mind changed gears. Just like with Shane’s graduation last year, the moment of her going up for her diploma happened so fast that there was nothing but smiles for all that she’s accomplished. It was a funny moment also because an old friend of mine is on the school board and was the one that handed her her diploma. I saw that he said something to her and she laughed. When we saw her after, she said that as Scott handed her her diploma he asked her if she had gotten her license (drivers) yet. That was great!! Kayla was just starting second grade when Shane was diagnosed. She went through years of being home many days at a time without me (stuck with JUST BOYS as she would say). There were many moments that were missed, and things that she would have liked to have done but couldn’t because cancer was also a part of her life. At times she took it badly. But as she grew up and really started to understand that even Shane had no control over whatever was happening, and that it was easier to just make the best of everything that was going on, she really started to handle it a lot better. She and Shane had a love/hate relationship like most brothers and sisters. They were either close and getting along great, or fighting with each other over the silliest things. I know she misses those moments, even the fighting ones. There was definitely someone missing in the picture that we took after graduation with her and Adam.
Thursday, May 19, 2005 5:03 AM CDT This is a very special weekend coming up, and I’m sure Shane is lovin it up there in heaven. Not only is his sister graduating from high school on Saturday, but a very special couple to Shane is getting married (I’m sure he’s up there saying “FINALLY”) also on Saturday. Shane had a very special friend, Holli, through his middle school years. They were quite funny together. Talking endlessly on the phone every night (mostly watching T.V. with the phone stuck to their ear). Through that special friendship with Holli Shane got attached to the rest of her family. Cheryl (Holli’s older sister), was seeing Matt (way) back then, and Shane became a Matt “Wanna-be”. You see Matt could do something that Shane’s mother (cough, cough) would never let him do……. wear shorts in single digit weather. But oh did he try to talk me into it. Cheryl back then was a pom pon girl, and every time she saw Shane and she had her poms with her, she would shake them all over his face. It was like one of those “Shane traditions” to him. Shane also had a special friendship with Holli’s dad. They shared a great love for the RED GREEN show, and Shane was never at a loss of words when they would run into each other. Because of a letter that Kevin wrote last year, Shane received a letter from RED , and some gifts. To say he loved the surprise when it came is putting it mildly. They’re a very special family that always made Shane feel welcomed. The pictures above are from Cheryl’s graduation day 5 years ago. Wow, where did time go?? Best of luck you guys (even though I know you really don’t need it) !!! The big question is...(and Shane was definitely pulling for him, and is probably still trying to work something out)... is Matt going to be able to wear shorts on Saturday???
Sunday, May 8, 2005 4:50 PM CDT HAPPY MOTHER’S DAY
Tuesday, April 26, 2005 8:42 PM CDT First I have to say, “Thank you Adam!!” You’re hired!! He put the birthday pictures on here for me this morning while I was still gone. I’ll write a little about my trip next week sometime. I will say that my trip ended perfectly today with a visit to Ann Arbor and all of our special friends there. It was a year ago today that we were there and Shane was finally starting to be back to his ole’ self after the effects of his radiation wore off. There were many pictures taken in clinic that day and Shane was having a good time in every one of them. On the way home from there I stopped in Fenton and got a Strawberry Cheesecake ice cream cone. That was our ‘on the way home from Ann Arbor tradition’ that we did regardless of how the weather was outside. I really think they thought we were crazy at times……….. On to today and our special guy.
Friday, April 15, 2005 6:35 AM CDT Well this has been one of those weeks again, where you just cross off the days and don’t look back. Is the gusty, COLD wind ever going to stop blowing here? It sure does make watching baseball games a little hard to do. By the time Tuesday came, and my up-coming meeting about ‘would I have my position at work next year, if not, where would I be, would it be a 6 hour, would it be a 4 hour, would it ?????????’ The poor kids at school that I work with, let’s just say that I was (the nice version) a…… BEAR. It’s done, it’s over with. I was given less than 5 minutes to find out that I was out of my school, out of 2 hours (don’t get me going on that one), out of some hourly pay, then “Where do you want to go?” So..... next year I’m going to be back at Shane, Kayla and Adam’s old grade school where I started over 7 years ago. It’s kind of like I’ve come full circle, but with so many changes in between. Right after that happened and I thought things couldn’t get worse, I was close to having a pity party for myself when I heard the news that an old friend of ours had taken a turn for the worse and was now receiving hospice. Back to reality, and what truly is important. Erica was a classmate of Kayla’s when they were in 3rd grade. She later moved to a different grade school and over time they lost contact. She was diagnosed with cancer (I’m not sure of the name) a few (plus) years ago. She had surgery, chemo, it was cleared, it came back, more surgery, more chemo….. I really thought she was doing better. We saw her last at the mall at the beginning of the year and she looked good. The news was a shock and I feel bad for not keeping up. In our family room is a small vase with a single, dried up red rose that Erica sent to the funeral home for Shane. For some reason I never threw it out and it dried looking so pretty. I’ll probably hold on to it for quite awhile. Please will you send some prayers her way.
Tuesday, April 5, 2005 6:46 AM CDT We had our first family birthday party without Shane. I really didn’t think about it too much until I realized that there would be only 2 kids at the end of the table by the cake, instead of 3. Just before I lit the candles though, Adam ran into the living room and grabbed a nice close up picture of Shane and brought it to the table. So there he was, with Kayla and Adam, and cousins Brooke and Garrett, just like always.
Sunday, March 27, 2005 HAPPY EASTER !!!!!
Sunday, June 12, 2005 1:07 AM CDT
Wow, where did the last year go? Sometimes it seems just like yesterday that we were in the gym at the high school watching Shane graduate. Other times it seems like a lifetime ago, and almost like a dream. I remember the excitement that day last year, realizing the fact that Shane was actually going to graduate from high school..... His last day of school in 3rd grade (the year he was diagnosed), I remember I just cried thinking that he may not even be here to start 4th grade. Then came the last day of 4th grade and the anticipation of his first transplant a week after that. I really expected the worst back then. His last day of 5th grade was another crying day for me because I just never thought that after the prognosis that he was given when he was diagnosed, that that day would ever come. For him to be able to go to the middle school was truly a gift back then. The last day of 6th and 7th grade were pretty easy because those were the years that he was in remission. Seeing the end of his 8th grade year was especially hard for me because I was working at his school then and I had to say good-bye to that group again (I worked at his school also when he was leaving after 5th grade). They were always so much fun to see in the hallway. His 8th grade year was also when he had relapsed and missed so much school during the winter for his 2nd transplant. To think that he was going to start high school in the fall of that year was such a gift, and such a scary thing. His 9th grade year was a breeze though, even though he was still being treated for stubborn, but stable disease. I think then the kids that he went to school with almost forgot that he had cancer. The treatment that he was doing back then did nothing to his hair, and pretty much had no side effects. It was truly a good year. The fall of his 10th grade year was when it all started to progress again. It was in the spring of his 10th grade year when he was sent home on hospice for the first time. That was such a hard time for me. I wasn’t sure if I should tell him everything the doctors were predicting so he could maybe say good-bye to his friends before summer vacation started (we were told then that he wouldn’t make it through that summer). It was such a hard decision. Then at my school a boy that was in 8th grade lost his father in a car accident the last week of school. It made me think that people die everyday without being able to say good-bye to the ones that they love and care about. It doesn’t mean that they didn’t love them, or care about them though. I decided then not to tell him everything. He had always faced his cancer with such a good attitude, which I think had sooooo much to do with how long he was able to fight it. He never let it consume him. He never let it ruin his life, and most importantly he never let it take away that smile or sense of humor of his. I didn’t want the doctor’s predictions to change that, or to give up too soon. His hospice was cancelled after a good month because he was doing so well again. His junior year brought on more problems and it was thought at the beginning of December of that year that he wouldn’t be around for Christmas. The support that he got from his school and his old schools was amazing. I felt bad at times because I would call and tell them that he probably wasn’t going to be back before Christmas, or Easter. They would make up for him a big card for everyone to sign during their lunch. He would then feel good soon after that and want to go in. How could I say no? The one time that he made it in they announced on the announcements to not forget to sign the card for Shane, and there he was sitting in first hour. He laughed so much about that. The same thing happened during his senior year. In the early spring last year was when the tumors around his brain started to grow and the chance of him finishing the school year was the worst that it had ever been (2nd time home on hospice). The teacher who was the class advisor for the seniors made arrangements to have a senior class picture taken with the whole class together. They were then going to have the picture framed and signed by everyone, and then give it to Shane. The day that the picture was taken was a day that Shane had felt good enough to go to school for a couple of hours. So there he was, in the picture, right in the middle of the front row. A picture that was meant to be a surprise for him. Last year on graduation day he was feeling good (thanks to an early dose of chemo that Dr. Yanik let us get the day before). The senior members of the Student Senate were in the front row. They were to get their diplomas after the rest of the seniors had gotten theirs. The way they were lined up, Shane would be the last person out of everyone to get his. After he received it from the same family friend that had given Kayla hers this year, and he was making his way down the ramp, everyone rose to their feet. What a happy moment!! It was definitely a day I’ll remember forever.
We’ve been on summer vacation for 2 weeks now. Last week, after only being out for 1 week, there was a terrible accident involving 2 of the students from my school. They were both on a bike, and were hit by a car. One of the boys died that night. The other boy is still in the hospital in intensive care. He’s still in a coma with bad head injuries and many, many, broken bones. Could you please send some prayers to both of their families, and to Michael who will have so many hard struggles ahead of him.
Today at church they have the kids from the class of 2005 wear their caps and gowns. Kayla is having Markie go with her (she really can’t do anything by herself – ha, ha). We have graduation parties every weekend from now until the end of June. It’s really nice because I don’t have to cook on a Saturday until after the 4th of July. I’m planning on going down to Ann Arbor for a visit between now and the end of the month. I’m starting to miss them again. I definitely have to find out when Shane’s nurses on the in-patient floor will be there. It’s been too long since I’ve seen them. Adam starts his summer baseball leagues this week, plus he's throwing in some football conditioning in there too. Kayla has been out collecting job applications (just collecting them though, not filling them out and returning them ~ I’m on to her!!). Getting her license before summer is over is a MUST!! That will keep me busy. The next time I write I’ll have to let you know what Kayla, Adam and I did this weekend to remember Shane. It’s something that I’ve wanted to do for awhile. We still miss him a lot, and we still talk about him a lot, and have a lot of fun remembering.
Thanks for checking in on us!!
Oh, I’ve wanted to tell everyone about this for awhile and I always forget. Watching ESPN last night on T.V. reminded me. I don’t know how many of you watch horse racing, but there is a new horse out there that is not only winning money for his owners, but also for Alex’s Lemonade Stand. Afleet Alex won the Belmont Stakes race yesterday (a very impressive come from behind win too). Out of the $600,000 the horse won, a portion of that (a portion of all of his winnings) is given to Alex’s Lemonade Stand. Late in the winter this year I received an email from Alex's dad, Jay. He was letting me know that 2 grants were going to be made to different pediatric areas at U of M in Shane's name. How very special is that?? It is so depressing to think that research for children's cancers is so minimal compared to the amount of money that goes towards adult cancers. Yes, over time (years & years, seriously) some of the newly discovered break-throughs will eventually be used towards a pediatric cancer. The amount of time that that takes though is waaaaayyy too long for all of the kids that are suffering. I remember so vividly the run around that I was given a couple of years ago when there was a drug (Iressa), that I wanted to be released on a compassionate basis for Shane. I found the company that made it and made contacts with a few people there. They then told me it was an FDA hold up. I contacted many people at the FDA (the internet can sometimes be a wonderful investigating tool). They gave me some help, some papers that needed to be filled out, and referred me back to Astra Zeneca (the company that produced the drug). In the mean time I had contacted a doctor in the south that had run some trials on it years ago. In the long run, absolutely NOTHING came from it. Everyone passed the blame onto someone else. It is SOOOOOOO GREAT (!!) to see money going to Alex's Lemonade Stand because that money is strictly for pediatric cancers. THANK YOU SO MUCH AFLEET ALEX FOR SUPPORTING CHILDREN'S CANCER RESEARCH!! To go to Afleet Alex’s site, click on this link AFLEET ALEX’S site.. Under the title "Alex's Beginnings", the last paragraph talks about our little hero and inspiration, Alex (Alexandra) Scott.
The pictures don’t really show the true color or size of it. It’s a real pretty brown color and about 4 feet a crossed. The pictures are so much clearer in person. I think he would be very happy with it (Oh, his class ring really didn't have KoKo on it anywhere~smile).
School is out. The end of the year really wasn’t as hard as I thought that it would be. There are a few kids that I’m going to miss next year, but I’m hoping to sneak over there and see them once in awhile. I’m giving Kayla and Adam this week to take it easy and then I’ll start my “honey do” list for both of them. I’m going to start working more hours at my new job now that school is out. Keeping busy is definitely a must. Adam has a baseball game on Tuesday. If they win they keep going, if they lose, the season is over. After that he’ll be in a couple of summer leagues. Then of course we have the almighty football conditioning starting (thank God he can drive now). This is going to be a longer summer for us than we’re use to. Because of the remodeling that they’re doing at a couple of the schools here we don’t go back to school until after Labor Day. I’m sure the summer will still fly by. Hopefully the weather will straighten out soon.
Thank you again for checking on us, and for still thinking of Shane.
After graduation we went and got something quick to eat. I ended up missing Cheryl and Matt’s wedding, but I ran out there to take a small gift that I had gotten them when I was in NY. What a beautiful day for an outdoor wedding. Cheryl looked so pretty, Matt looked very handsome (and hot ~ no shorts), and Holli and the bridesmaids dresses were gorgeous. I’m glad that I ran out and saw them. On Sunday we had a little party for Kayla. She had decided a while ago that she didn’t want a big graduation party. We tried talking her into it but she refused. It ended up being just my mother, brother, Randy’s mother, brother, sister, and their kids. Kayla had passed the word around to some of her friends from school and a lot of them came. It ended up being very nice for her and I was really glad for that. After everyone left and things were pretty much put away I ran out to the cemetery. As I came around the corner I could tell that Shane’s bench had been put in. Boy did the tears start to come then. It turned out sooooo great, he would love it!!! I’ll get a couple of pictures of it and get them on soon.
That’s all for now. 3 ½ more days left of school. Boy can you tell by the way the kids are acting that they are definitely ready. One more special occasion has passed without Shane. I’m sure some day we’ll get use to it, and really, I truly feel that he was right there with us, and Kayla on Saturday. He’s probably the one that made Kayla almost slip coming down the ramp after getting her diploma. That would definitely be a moment that Shane had a hand in. Thank you everyone for checking in with us, and for still thinking of us.
Yesterday afternoon in Ann Arbor was a memorial service for all of the kids that have died over the last year. I wasn’t sure if I wanted to go, but I decided finally on Monday that I did. I think I would have been mad at myself if I hadn’t gone. It was like taking a few steps backwards for me, but I saw quite a few people there that I love to see. I didn’t recognize any of the other parents, but they weren’t just parents of kids from the cancer center, but from all of the departments at Mott. I think I would have been completely okay throughout the whole drive down and the actual service, but just before I left the house to go the cemetery called with a couple of questions about the placement of Shane’s bench. They must be getting ready to put it in. I guess it kind of hit me as I was driving down that there’s going to be some type of a feeling of closure once they get it put in. I’m not sure if I’m ready for that or not……. One Day At A Time……, I know. I am trying to keep busy (and pay off a bill that I’ve accumulated over the years), so I started another part time job after I leave school (thanks to an old friend). It works out good right now. I just go in for a couple of hours everyday after school. Then I get days off for Adam’s games and things like today’s service. During the summer I’m hoping to get more hours. I just can’t see myself staying home all summer. Let’s face it, Adam and Kayla are at the age that when I’m here, they don’t know that I’m here (computers, headphones, T.V……..). Teenagers!!
That’s all for now. I’ll probably put more in over the weekend after Kayla’s graduation. Today is her last day of school, Adam and I have another week yet. It sure is flying by. Thanks for checking in and…………. HAPPY WEDDING DAY ~ CHERYL & MATT!!!!!
Before I left for my trip to NY the yearbooks from last year (Shane’s senior one) came in (they were delayed because of some major problems). It was nice to go through and see his picture pop up throughout it for different reasons. He never seemed to be there when group pictures were taken for Science O, or Student Senate, but his name was mentioned and it was nice that he was included. His picture was in there for the mock elections and his being given the “Most Outgoing” award. He’s sitting on the girl’s lap that got it also (cute picture). There’s a picture of Mr. Benner playing his guitar and singing the song that he wrote for Shane last spring. Later on in the yearbook they printed all of the words to it and said how it was dedicated to him. In the back of the book after all of the pictures there is a section for parent adds (adds to your kids). I remember when I wrote out Shane’s and all of the things that were happening at the time. It was pretty clear back then that he may not be with us a year from then, but with him you just never knew. I tried to pick words that would be good if he was still here with us, but also that would mean a lot if he wasn’t. With it were 2 pictures. The one of him back in 8th grade with his bald head and the U of M tatoo on it. Then the one senior picture with him sitting on the floor with his U of M flag. Here is what the add said: Shane, The years have truly flown by (I do know how to spell the word truly, it was a misprint in the book). You were given a lot to deal with at a young age. However, you always meet every hurdle in your life head on, and rise above it. Your positive attitude, sense of humor, and enthusiasm towards everything, has and always will inspire us. You have so much to be proud of!! We love you!! …… I put the ‘rise above’ part because he always did rise above all of the obstacles that were ever thrown at him. I also knew that if he wasn’t here with us when the yearbook came out, that he definitely would be up in heaven (his final ‘rise above’) with no more hurdles to worry about. His yearbook is a very special thing.
Okay, a little about my trip. First (Shane would love this story), I got to NY at 9:00 Friday morning. I couldn’t check into my room until 4:00, but I knew that. They did say though that I could drop off my suitcase there and they would store it. When the cab pulled up to the front door (cab fare 2003 from the airport to our room $17, this year $30, ouch) of my hotel I thought, not too bad. Then I went in, ha, ha. Don’t believe what you see on the internet. It was very run down, very dirty, and not in a real good part of town (that part could have been worse). So I dropped off my bag and took to the road. About 5 blocks away I thought this is crazy, I’m going to take the subway (something Shane would never let us do when we were there. I think he watched too many movies and he had this visual of what it would be like down there). I bought a week pass for $21, which is really a good deal because you can get on and off as many times as you want. I bought a little book that had road maps of NY, plus things to see, plus a map of the subway. It was like my bible while I was there. I know I had “tourist” written all over me because I had that thing in my hand everyday. By 11:00 I was soooo tired. I had gotten up at 2 that morning to leave for Detroit for my flight. I really needed a place to sit for awhile and take a little nap. So where does one find a place to sleep in NY and not look like a homeless person……… the hospital. Yep, I got on the subway to the east side, walk about 5 blocks and went to MSKCC. I wanted to go there anyhow to see the new clinic so this was perfect. Where in a hospital do you find people sleeping…… a waiting room of course. I picked the waiting room for pharmacy. They’re always backed up there. Shane would have loved it. Every time we were there and they told us we had to pick up a prescription, he would start to complain because he knew it would be a long wait. I ended up finding a corner chair, laying my head on my arm, and sleeping for 1 ½ hours. Funny, huh? When I woke up I was ready to go. I got back to my hotel right at 4 and went to my room. Definitely not a Holiday Inn. It was a bed though, and a cheap one. No bathroom, no T.V., no phone. I did have a little refrigerator though, that was nice. For a bathroom you shared one down the hall with the rest of that area (about 6 rooms I think). I would do it again, it saved me a lot of money. While I was in NY I went to a lot of the things that Shane and I went to, that was nice. I also went to some of the places that we didn’t get to go to, but he had planned to when we went back. I did find the “Peanut Butter and Co.” restaurant that he had found on the internet and wanted to go to. Everything in there is made with peanut butter (Ex: The Elvis – a grilled peanut butter sandwich with sliced bananas and honey. The Pregnant Lady – peanut butter and pickle sandwich. Cookie Dough Surprise – peanut butter on one side and vanilla cream chs. on the other with chocolate chips. Ymmmm). I got the Fluffernutter (I wasn’t too brave), it was peanut butter with gobs of marshmallow cream. He would have loved it. I took a lot of pictures while I was there thinking that it may be awhile before I will be able to get back there. I did get up to the new clinic at the hospital. It is amazing!! Dr. Kushner wasn’t there, but I left him a little letter telling him that Shane was gone and why I was there. We got a nice letter back from him last week in the mail. They truly are special people. Back to the real world now.
School is winding down. I really am not one that handles the end of any school year very well. I hate good-byes. This year is even worse because Kayla will be graduating (where did the years go), and I will be leaving my building after this year. I love seeing kids grow from 6th grade to 8th grade. Hopefully this will be one of those things where I expect the worst, but it doesn’t happen. Maybe it won’t bother me as much as I think it will. Adam is still busy with ball games (it is so nice to have him driving). Kayla is down to only 9 days left of school (I really need to get her driving). The bench for Shane isn’t in yet. I think we’re still shooting for Memorial Day, but if it’s not in by then, that’s okay. I forgot to say that our friend Erica lost her battle with cancer just before I left for NY. She fought such a hard battle. She would have been graduating this year with Kayla. Also, Lexy, that I have mentioned here before, also lost her battle with the same cancer that Shane had. Both their families could use some prayers for strength right now.
Thank you everyone for still thinking of us, and for checking in on us. It means a lot!!
19 years ago today a very special boy was born. The last couple of months leading up to that special day were a little uncomfortable for me. Even back then before Shane was born he was already pretty active. So much so that my stomach at times looked like something from a sci-fi movie. Constantly rolling and shifting. Things slowed down a little for the first few months after Shane was born. That is until he discovered that by moving your arms, hands, legs and feet a certain way that you could make yourself travel. I remember having a couple of different gates set up through different walk ways in the house at the same time just so I could keep him in a designated area. It wasn’t long after that that he realized that walking could get him places faster. He was 8 months old at Christmas that year. He got a couple of those walker toys that you hold on to and walk behind. By New Years he was all over the place doing it on his own. Next (and I’m sure those of you who knew Shane will believe me with this one), came talking. He started that also at a young age. It wasn’t long before just one or two words became sentences. Once it started, it never stopped : ) I remember when he was 2, 3, 4, ……. some days he would just talk all day. By night time I would be tired, but he was still on his first wind. I’d tell him to open his mouth and stick out his tongue. I would then pretend to seriously look at it and then tell him that it looked really tired and it needed a rest. He would just giggle and keep talking. Up until Kdg. he couldn’t talk without getting so excited that he would be bouncing on his toes with his hands flapping around. Even back then everything seemed to excite him. So many simple things made him smile or laugh. Once he started grade school he started to calm down some. I remember his 1st grade teacher telling me about how in the winter for their 15 minute afternoon recess, he would be the last one outside after getting all of his winter gear on (he was starting his ‘always on the go’, but with a ‘not a care in the world’ attitude already). Just as he would get outside it would be time to come back in (I can picture it now). Back then he also loved to dress up. I’m talking a button down shirt with a tie. He was such a little politician. Ahhhhh, speaking of politician, that’s the year that George Bush lost to Clinton. To say that Shane was traumatized is putting it very mildly. They had done a mock election at school on election day and Bush had won (I know Shane had campaigned for him). The morning after election day when I told him that George had lost he cried (and cried, and cried……). He refused to get out of bed. He ended up missing the bus so I had to take him in. Still upset, still unhappy. I went back to his classroom (dragging him behind me) and explained to his teacher what was going on (both of us trying hard to be sympathetic and serious). I’m not sure who suggested it, but when he got home from school that day he wrote President Bush a letter saying how sorry he was that he lost, and how he had voted for him. We stuck that letter, and a picture that he drew, in the mail to the White House. I had copies made first and they are both priceless. I had them both out at graduation and at the funeral home for everyone to see.
I could take grade by grade, year by year, and go on forever about Shane. I guess I want you all to know that Shane kept all of those special gifts that he got at a young age (the gift of gab, wanting to always be on the go, things coming easy to him, simple things making him smile, and that laid back ‘I don’t have a care in the world’ attitude) and I believe those gifts helped him to fight his cancer as long as he did. He was never at a loss for words. If he ever was, you knew that he wasn’t feeling too well. He always found something to smile about. Even on days that he would be feeling lousy, an episode of Boy Meets World, Red Green, or Extreme Home Makeover would make him smile. Something as simple as just seeing his one special Child Life guy walk into a room could get a grin out of him, even on a bad day. His wanting to be on the go (a carefree go though) and his gift of things coming easy to him, I believe helped him to finish high school and be able to start Central Michigan. He would miss days, or even weeks from school, but be able to show up and pick right up with everyone else. Especially if it was a history or government class (His Calc. and math class last year were definitely exceptions. Way too hard to self teach those). All these gifts helped Shane to accomplish so much during his short, but well lived life here. Every year after Adam’s birthday until Shane’s birthday, I’ve been able to tell people that I have a 1, 2, and 3 year old, or a 13, 14, and 15 year old…….. This year it will end with us having a 16, 17, and 18 year old. But boy did that 18 year old fill up those years with so many accomplishments, fun and laughter, and give us so many, many memories to hold on to. HAPPY BIRTHDAY SHANE !!!
We love you with all of our hearts!!!
Adam is into the beginning of baseball season. The good thing is that it can’t get much colder than some of the games he’s had already. We were spoiled last week when the sun was shining and it was pretty warm. Kayla left this morning for Chicago with the vocal groups from school. I’m getting ready for a trip that I am so looking forward to, especially after this week. Last October after Shane had to stop going to school, he and I planned on going back to New York one more time. We had made plans for the week after his chemo in November because that was always his good week to do anything. He wanted to go back to places that we had gone to before, go see the new clinic at Sloan because we had missed the grand opening by a couple of months, visit with Dr. Kushner (he liked him a lot), and check out some places that we had missed and new ones that he had found (a restaurant that serves everything made with peanut butter). Well, the last chemo did not work as we had hoped and once again we had to cancel a trip that he wanted to do badly. I decided after Shane died that I still wanted to make that trip. I leave early Friday morning and come back Tuesday afternoon, Shane’s birthday. I planned it that way. It was 2 years ago that we left on his birthday for one of our New York trips. I know that he is going to be with me the whole time, especially when I go to see “The Lion King” on Broadway again, our FAVORITE!!!
Thank you everyone for still checking on us and for your messages. Some days are easier than others. For me, work is definitely a good distraction. Reality hits when we’re at home. Kayla and Adam still talk about Shane a lot. Kayla gives Adam a hard time about not knowing how to program something like Shane did, or being able to help her out with her chemistry. Adam comes back with how she can’t help him with his math. Life goes on, it’s just really different now.
HAPPY SPRING !!
Easter morning I got up early and made my food to take for our Easter get together in Standish with my mom’s side. Shane always loved going to those. When you get together like that (kind of a mini family reunion) 3 times a year, there’s always a lot of stories to catch up on. Before we left to go I ran out to the cemetery. It was a nice sunny day and I wanted to remove the old, now ragged looking, grave blanket. I took out a large blue (either for Bobcats, or U of M) flower pot filled with dirt. In it I stuck a John Glenn yard sign, a U of M car flag and angel statue that were with arrangements from the funeral home, and 2 pictures of Shane that I had laminated (it’s a big pot). I wasn’t too happy thinking of his site having nothing on it until his bench came in. I got permission to leave it out there that long because usually everything has to be cleared out by mid April. I’m glad that it’s out there. It doesn’t look so empty now, plus it’s “so Shane.”
Caringbridge has a new rule that you can’t have links on your site to other caringbridge sites (problems with privacy issues). I kind of understand, but it’s frustrating. I learned so much about what to expect near the end for Shane from going to other kids sites and reading how their fight ended. It made it a little easier if that’s possible. All of the sites that I have ever mentioned here can still be reached by going down to Beebo’s link (either Warriors, NED, or Angels). Awhile ago I wrote about Jay and Amanda. To young adults with NB that met while being treated in NY. Jay was, at that time, given the news that he probably wasn’t going to beat his cancer. He and Amanda had been given permission to attend her jr/sr prom last year as sophomores. Very sadly, Amanda died suddenly over the weekend. I guess I keep bringing kids up that are losing their battles against cancer, because Shane may be the only young person that any of you will ever know that had cancer, and died from it. I want to keep reminding everyone that there are so many more that lose their lives every week. It is far from over for too many.
Spring is definitely trying hard to be here. The sunshine that we’ve had lately has helped a lot with my getting through each day with a little more ease. Thank you all for still checking in, and thinking of us.
HOW ABOUT THOSE SPARTANS!!!!!! WAS THAT A GREAT GAME OR WHAT!!!! (Sorry Shane)
Sunday, March 20, 2005
Did anyone happen to see Extreme Makeover Home Edition (Shane’s last favorite new show (does that make sense?)), last week? It was about a little girl, Kassandra, who had Neuroblastoma Stage III. She asked ABC if they would paint the walls of some of the hospital rooms that she stayed in, or was treated in, with “colors”, because she didn’t like all of the white walls there. As she was saying it on TV, Kayla is yelling that she didn’t like the white walls at Shane’s hospital either. It was one year ago when Shane was admitted for pneumonia after his bone marrow test. It was also when we had to cancel our trip to Florida over spring break. It was also when Shane started having some bad symptoms and the tests showed that he had 2 new masses in his head. Kayla felt bad about Shane feeling bad for the cancelled trip. She felt even worse when she thought of the white walls in his room. So her and her friend, Markie (who was suppose to go with us to FL), stayed up all night to make this HUGE mural (5 sheets high by 15 sheets wide of printing paper) to hang on his wall. It was of a Florida beach scene. Between that, and the many collages of photos, drawings, signs, and stories that she drew, his wall was filled (picture in photo section). It was definitely entertaining for everyone that came into his room, and definitely better than the white walls. Thank you Extreme Makeover Home Edition and Kassandra for bringing a little attention to children’s cancer.
This last weekend Shane’s high school band hosted, and participated in the band festival. I volunteered to help a little because for one, they can always use help. And another, the past couple of years it was hard for me to commit to anything like that. Friday night Glenn’s band performed and they sounded really good. Shane would have been proud. Someone asked me if it was hard being there and I told them not really. I think it was harder to see a couple of the kids that have graduated already, walking around with their college band coats on. Only because I know that that was exactly what Shane wanted to do, and I know he would have been doing it also…………. Yesterday was the Science Olympiad competition that Shane loved to be in (picture in photo section). Last year was the only year that he had to miss. He was feeling pretty crappy in the hospital at the time, so it didn’t bother him too much to not be able to go. Someone at last year’s competition made a picture of a face on a paper plate (?) with Shane’s name under it. Held it up in front of their face. Then got a picture of them and Shane’s partner with the medal that they won for one of their entries. He got a good laugh out of that one. This year the teacher who is in charge asked for one of Shane’s senior pictures to put on the teams T-shirts. He would have loved it!! …………..Today is the St. Patrick’s Day parade, which is something that Shane never missed. If the band was there, he was there, no matter how he felt. Two years ago (picture in photo section) was the last time they marched in it. Shane was the drum major, so being the “head strong” guy that he was, he insisted on going even though he was having some pain in his leg at the time. The parade route is around 2 miles long. He did the majority of it walking backwards, with his arms outstretched directing. It was very hot that day (nothing like today), in the high 70’s at least. Boy did he pay dearly for a couple of days after that one.
I called one of Shane’s clinic nurses (aka – his other mother) a couple of weeks ago. It was really nice just to hear her voice. We talked for quite awhile. Now that the weather is (or was) getting a little better, I’m going to go down again for a visit. I want to make sure first though that some of his inpatient nurses will be there that day, or night, too. I guess I’m starting to get a case of withdrawals again, especially at this time of the year…….. I also called Joshua’s mom last week to see how she is doing. It was so nice to talk to her. We have a lot in common and she is the sweetest lady to talk to……… I spent a little time with Shane’s friend Stacy last week while she was home on spring break. I also saw his friend Diane a couple of weeks ago for a little bit when I was leaving school. I’ve been keeping up with them through email since Shane died. It’s nice to hear how they are doing.
We are still doing okay (fine). Waiting, sometimes not too patiently either, for spring to come. Hoping that that may help out with the blahs. Adam is in full gear for baseball. His first game is suppose to be on April 2nd. Do you think that they’ll be allowed to wear snow boots???? He is still counting the days until he gets his license. I think we’re at 16 (JOY!!). Kayla is going to start looking for a prom dress. Shopping with her is always a treat (ha, ha). She can be such a hoot sometimes. Things with my job next year are not looking good at all. The school board has voted to eliminate quite a few positions. The way the bumping process goes I’ll be bumped from my job at the middle school, down to a 4 hour position at a grade school. I’m still not going to worry about it until maybe August. If anything, I’ve been taught a lot of patience over the last 10 years.
I’m going to end here with some words to a song that I hear on the radio once in awhile. The first time I heard it I immediately thought of Shane, and thought that it would be something that he would definitely want to tell his friends, and everyone else that he knew.
I wish you strength, when times are hard.
Oh, I wish with all my heart you find just what you’re looking for.
I wish you joy.
I wish you peace.
And that every star you see is within your reach.
And I wish, you still loved me.
(I Wish (You Still Loved Me) – JoDee Messina)
We love you Shane!!
Wednesday, March 2, 2005 Since before Shane died this all seems to be never ending. There always seems to be a couple of kids that are in the final stage of their fight. When one, or both of them lose (or win depending on how you look at it), their fight, they have been quickly replaced by one or two more. That again is currently happening. Just as we learned in our NB family that Chris had died on Monday, we learned yesterday that another boy has begun his final fight. Please will you keep Jay and his mother in your prayers. Jay was diagnosed in 2002 when he was 13. To get the best treatment that they thought would help Jay, he and his mother pretty much moved to the Ronald McDonald House in New York. The 4 times that Shane and I were there in 2003, Jay and his mom (Virginia) were always there. I think at that time they had only been able to go home a few times. I remember back then seeing Jay all over the place. Hallways, elevators, lobby, sidewalks, he was so full of energy. His mother was our computer helper. She would help us to get our internet working so Shane could stay in contact with his friends back home. While at the RMH Jay met a girl, Amanda, who also is fighting NB (she's having a rough time right now and could use your prayers also). Last year Jay and Amanda got special permission to go to Amanda's prom in Ohio, even though neither one of them were juniors or seniors. What a special story. Will you please keep them both in your prayers. Thank you so much!!
Monday, February 14, 2005 Today, Valentine's Day, should be a day of kids having fun at school passing out Valentine's and having little parties with their friends. It should also be a day for parents to be able to share lots of hugs and love with their children. The last thing that this day should be is a day that any parent should have to say good-bye to one of their children. Sweet little Joshua earned his angel wings early this morning (Joshua's site). Cancer just doesn't take a day off does it? Will you please keep his family in your prayers. I know in a way that they must be feeling a sort of relief that Joshua is free from his pain and fighting, but I also know that they will need a lot of strength right now, and in the days to come. It is truly days like this that I have to remember again how lucky we were to have had Shane with us for so long with active disease. We were given so many memories to hold onto. They will always be a treasure.
Saturday, January 22, 2005 ~~ Little Joshua and his family could really use some prayers right now. Shane and I met him and his mom, Christine, when we were in New York. He's such a cute little guy that's been through a lot. Joshua's site... Also, Alexia's family has gotten some bad news and she is having a rough time right now. Could you please add her and her family to your prayers also? Alexia's site... Thank you so much!! ~~
Saturday, January 1, 2005 - Post Rose Bowl Game HOW ABOUT THOSE WOLVERINES!!!!! No we didn't win, but wasn't that a GREAT game?!!
Saturday, December 25, 2004 0:46 AM CST Well we finally got a tree. On our way to our usual tree farm we came across a guy sitting in a truck in front of a small area of ‘ready to cut’ Christmas trees. They were HUGE!! In some spots there were no rows to walk in between because the trees had grown so much they were touching (Kayla mentioned that she thought he must be giving them steroids). He told us to yell for him if we found one and that he would come and cut it. He also said that if they were too tall (which they all were), he would cut one higher off the ground for us. Walking around we noticed that most of them were cut a good 3ft off the ground. The one we got is sooooo round and fat. It had already been cut off earlier and then not taken so he gave it to us for $10. Can’t beat that!! It takes up quite a bit of room, but it looks nice all decorated. Kayla and Adam hung Shane’s ornaments this year, and for the angel on top of the tree we put a picture of Shane and KoKo that was taken Christmas Day 2002. I love that picture and it looks perfect up there…..On Tuesday of this week I gave myself the best Christmas present by going to Ann Arbor and seeing everyone. I think I was starting to have withdrawals because it’s been over a month and a half since I was there. That much time in between visits hasn’t happened in years. Shane and I had started a little project on the way back from his last chemo the first of November. There’s a plant nursery on the way home that turns into a Christmas store every year after the summer. We had done this for his in-patient nurses years ago when he spent a lot of time up on 7 West. This time Shane wanted to do it for his clinic nurses. He took each nurse, Dr. Yanik, and a couple of Child Life staff, and picked out an ornament that kind of represented them to him (He also got one for Kayla and Adam while we were there. They were a nice surprise, and a special gift for them). He was very particular and some of them were quite funny. We were suppose to then deliver them when he got his next chemo. Instead, I ended up doing it by myself and I wrote out a little card that told each one why he chose that ornament for them. For an example the one ornament was a snowman holding a mop-like looking broom. He gave it to nurse Suzi because he said she was always mopping up after everyone (ha, ha) and she was the one he could always count on to hear his IV and come and fix it. They all liked them and said that they could see him picking out who got what. It was such a nice visit. I’m glad that I went…. Last Wed. & Thurs. (16th & 17th) I went to CMU to meet 2 of Shane’s professors. I knew that their final exams were that week and I wanted to meet them (don’t ask why???) before their classes were done for the semester and I wouldn’t be able to find them. On Wed. I was able to meet his Speech teacher who was very nice. With speech being a class that they have to take, I'm sure she gets some students in there that would rather be somewhere else. She said though that she really liked the group of kids that were in his class and that they had a good semester. I can see where he would have liked being in it. On Thurs I missed Shane’s Jazz class professor because their exam was on Tuesday. On the way home I had extra time then so I stopped at the hospital in Midland to thank them for everything that they did for us the last couple of months. The 3 nurses that Shane had while he was going there really did make the transition from going to Ann Arbor for blood to there pretty easy for him to do…. Last Tuesday night (14th – have you noticed I’m going backwards?) Adam made us all proud by dancing (and doing very well) with the Pom Pons at half time of the varsity basketball game. For only practicing around 15 minutes after school for a week they really did a pretty good job. He loves stuff like and it was definitely a fun thing to be able to go to and enjoy.
Wednesday, December 15, 2004 9:36 PM CST I thought about updating a couple of times, but I guess I wasn’t in the right mood, or I couldn’t think of anything major to write. There’s just a bunch of little things that have happened that I’ll tell you about...We got the “Thank You’s” finished yesterday and dropped them all in the mail today. I never would have imagined all the people that we have seen, or heard from, these last couple of weeks. It has been amazing.... About a month ago I tracked down the address of the original doctor from Ohio that was working the day we stopped at the hospital with Shane 10 years ago. We kept in contact with each other for over 5 years after that, mostly at Christmas time. The last few years though we lost contact, and then I lost his address. When Shane reached his 10-year anniversary of being diagnosed I thought a lot about Dr. Hoh (his name) and wanted to find him. It took quite a while, and a few phone calls, but he is now, and has been at a hospital in PA. I wrote him a letter around the beginning of November and told him some of the things that Shane was able to do these last few years. How I still think of him every August 18th and the compassion that he showed us that day, and he is the one that pretty much started us on the path of “enjoy your time”. When we found Shane’s original tumor we were on our way to Sea World that morning. I thought the best thing was to come home right away, but he told me to “go to the park, tomorrow will be okay.” That’s what we did. Shane had a ball. Kayla and Adam had a ball. Randy and I were miserable. But it was something important that I learned waaayyy back then. Anyhow, the Monday after Shane’s funeral I got a phone call from Dr. Hoh. He wanted to let me know that he got my letter and that he still remembers us and thinks of us. I then had to tell him that Shane had died when he asked how he was, but it was still a nice conversation and I’m glad he took the time to call....That same Monday we went to the high school because they were having a little memorial program for Shane. The Superintendent of our district started it with a little talk about Shane. The band played their school fight song, the Hail to the Victors, and then they played the song, “Fate of the God’s”. That is the song that the band played at festival a couple of years ago. Shane had this really pretty solo in it that I just loved. It was his all-time favorite band song. Shane's teacher from his junior year, Mr. Benner (also one of Shane's Pall Bearers), sang the song that he wrote for him last year also. I love that song. He put all the words to it in the guestbook on Dec. 6th if you'd like to see them. The choir sung “I Will Remember You” while a little power point of Shane ran. They then finished the program by giving us a large picture of Shane (his senior picture with his letter jacket and Saxophone) with the poem up above printed over it. It was all very special.... We have received so many cards and letters from so many people. Two of Shane’s classes at CMU sent us a card that everyone had signed. We also got a letter from one of the doctors at U of M that we would see once in awhile at clinic. I have to share part of it with you. Back at the beginning of Sept. Shane and I were leaving clinic after he had gotten his chemo. The waiting area was empty because it was late and we had stopped to see something that was on the T.V. Dr Levine walked through and asked how Shane’s summer went, and how his trip to Washington D.C. had gone back on Memorial Day. That was the wrong question. He then sat patiently and listened, and listened, and listened, to one of Shane’s B.C. (Before Christ) time stories. It was quite funny. In his letter to us last week he wrote, “I especially enjoyed his stories about his band trip to Washington, D.C. He seemed much more perturbed about a crazy schedule than life-threatening cancer.” That definitely brought a smile to my face. Last week we also got a book in the mail from Shane's in-patient nurses that are still there. It's a kid's book called "The Fall of Freddie the Leaf." This is kind of amazing because it reminds me of how connected we were/are/?? with them. I had already bought that book a few weeks ago. When Shane and I were down in Ann Arbor for his last chemo at the first of November, I passed the court yard there everyday going to the cafeteria. There were a couple of trees out there that were sooooo orange and beautiful. I had sensed that that might be our last time going down (another story at another time), so I went outside and picked up some of the leaves that had fallen and brought them home and put them in my book. They are now in the book from the nurses. It is such a special gift....We also received a Christmas ornament in the mail from Brandon's family. Brandon is the boy that had his birthday party in the spring and had his friends bring money instead of gifts for him. He then gave Shane the money that he received. The ornament came with a really nice poem and part of the poem is engraved on one side of it. The other side has Shane's name and date of birth and date of death on it....We are so fortunate to have so many special people in our lives!!
Monday, December 6, 2004 1:18 AM CST (A link to Shane's obituary is below)
Wednesday, December 1, 2004 Shane's Funeral Arrangements:
Sunday, November 14, 2004 12:06 AM CST This has been one of those weeks where you just X the days off and don’t look back. Shane got his chemo, and I wish I could say that it took care of everything, but this time it didn’t. He started last Sunday night loosing some feeling in his right foot and up his leg some. It did get a little better from the chemo, but he still has lost some mobility and strength in it. On Tuesday his Heartland nurse (that comes once a week) had a wheel chair and walker delivered. That will make things easier for him to get around. Right now Dr. Yanik thinks that it’s the tumor in his back that spindles out to different areas. We knew last year when we were in New York that one of the spindles had entered his spine but wasn’t touching anything yet. With the pain in his back increasing, and now with his right leg acting up, it probably is branching out more and starting to come in contact with some his nerves back there. For the most part of the day though if he’s sitting down, he feels okay and is pretty much his usual self. Now, let’s get back to the rest of the week. We had been Valet parking all week. It is so much easier to get him out of the car and into a wheel chair and into the hospital, without worrying about leaving him there and then going to park the car. On Thursday we waited outside for the car to be brought up because it was so nice outside (Thank you God for finally giving us some sunshine!!). The guy brought it up to the area but couldn’t get close to us because there was a car there. I started to cross with Shane and he motioned for me to wait so he could back in closer. Well he started backing up, turned the wheel, and smacked the Trail Blazer right into this huge marble pillar that the hospital has out front. (Ooops!!) Shane and I looked at each other and said, “That didn’t sound good.” I felt so bad for the guy. He was just trying to be nice and get closer for us. They took all of our information and said someone would come out to look at it to get it fixed. The lady that took the information made the comment that I was being very calm about the whole thing. I told her that I have a son with cancer. Not much of anything bothers me anymore. On Friday we planned to stay overnight because we got 2 last minute tickets to the MI game. We had to be there early Saturday morning so I could take those 2 tickets in and exchange them for 2 in the wheel chair area. We’ve never had a hard time finding a place to stay down there, even on a game weekend. This time was different though and we ended up staying in Whitmore Lake at a Best Western (Nasty, I don’t recommend it. I had to use my keys as pliers to turn the heat on because all of the knobs were broke off). Yesterday morning when Shane woke up he wasn’t sure if he wanted to go to the game. His back was pretty sore. After some meds and him getting into the wheel chair to see if it was comfortable enough, he decided to give it a try. I told him we could always leave early. Shane has this thing about traditions. One of our traditions is that we haven’t gone a year, in the last 10 years, without going to at least 1 home U of M game. We couldn’t break that tradition now. Ahhhh, but all of the thinking it over and waiting for his meds to kick in had us running a little behind. The freeway was starting to get backed up a little so we got off to drive on this road that runs parallel to it. There was this little yellow car in front of me (that started behind me) that was weaving in and out, passing people. I was hoping that he would get caught. But NOOOOO, who got caught coming over a hill, ME!! Now this is another tradition that Shane and I have. Over the last 10 years, all the thousands of trips that we’ve made back and forth to Ann Arbor, I have never gotten a ticket. My luck ran out. Then my new friend (as Shane kept saying from the back seat), started giving me a lecture about flashing lights, when to pull over, when to stop, …… I interrupted him and said, “PLEASE, don’t give me a hard time today.” And that was that. He ended his lecture. Shane said that my ticket doesn’t break our “ticket tradition” because we weren’t going to the hospital when it happened. I like that analogy. So we finally made it to the game and to our seats in time to catch most of the bands pre game show. I was very happy about that. By half time his back was starting to flare up again so we left. It was a good game from what we saw, and it ended even better. One of our other traditions is to always go to Mongolian Barbeque after a football game. With Shane not feeling well enough to go inside, he said it wouldn’t be breaking tradition if I went in and got take outs. So that’s what I did. All of our traditions untouched. He is very happy about that!!
Monday, November 8, 2004 I'm sorry about not updating sooner. Shane is getting chemo this week. We did go in last Friday to start because he was starting to have some problems. I hate the weekend before he's scheduled to start. Something always seems to happen. This weekend was no different. Some heavy duty prayers sent Shane's way would really be appreciated right now. I'm hoping as the week goes on and he gets more chemo that things will get better. I'll update again in a couple of days. Thank you all for thinking of Shane.
Sunday, October 24, 2004 12:51 AM CDT This entry may be shorter than most of my other entries. I'm not sure if that's a good thing or not. There's just not a lot to write about right now. This week went 'okay'. The chemo Shane got during the week definitely helped him with the pain he was having last Sunday. The Temazolomide was dropped this time and his Irinotecan was increased a little. I think we were looking for a quick relief on Monday and that's why they did it that way. The other side to this now is that he has a fine line of how much Irinotecan he can get before he gets the side effects from it. I think we may have crossed that line. He's been pretty nauseated the last couple of days with an upset stomach to go with it. We'll have to play around with the dosage maybe before his next course. His pain is gone though which I'm really happy about.
Monday, October 18, 2004 7:14 PM CDT Well, last week wasn't too bad, the beginning anyhow. After getting back from Toronto it took Shane a couple of days to get rested up. By Wednesday though he had started showing signs that he was ready for his chemo to start. Before we left for Ann Arbor on Thursday for the radiation to his leg, I emailed Dr. Yanik and asked if maybe Shane could get a dose of chemo on Friday. For one, I knew if he didn't get anything that it would be a long weekend. Plus the last home football game was Friday night and he hadn't seen the band perform yet this season. It was something he really wanted to do, and something that I really wanted him to be able to do. I knew if he was able to get some chemo that he would be able to go. Radiation to his leg was a breeze as always. When we were done we went to clinic so he could visit everyone (I think he was starting to have withdrawals. It's been over a week since he was last there ha, ha). When we got home Dr. Yanik had emailed me saying that chemo on Friday was okay. YES!! So Friday morning he got a dose of chemo and Friday night he was good to go. He felt better during the game, and better still on Saturday. Sunday though for some reason everything came crashing down. I had woke him up during the night and in the morning to keep his pain meds going. The visiting nurse that we have coming (Shane and her have really hit it off) suggested that he keep taking his meds right now (especially until he gets his chemo) even when he's feeling okay. That it would help keep everything at an even level instead of having to medicate him heavily to catch up with any pain he might get. Well, it worked for awhile, but when he got up around noon Sunday he was a mess. It was his whole right side from his neck to his knee that was causing his pain this time. After a couple of phone calls and increasing his morphine and shortening the time in between doses, he was able to get more comfortable. Today couldn't have come sooner. We got to Ann Arbor, Valet parked, got him in a wheel chair and got him up to clinic. He got the room with the bed instead of a chair, and everyone was so great helping to get him from the chair to the bed and getting him comfortable. Dr. Yanik came down and saw him and asked if he wanted to be admitted to get help with his pain. He said no. As long as he was sleeping and not moving he felt okay. By the time it was time to leave (after chemo and platelets), he was already starting to feel better. It's amazing really. I think people think I exaggerate about how his chemo really does help him to feel better if he's having any problems. It's not always instantly, or 100 percent feel better, but it's better, and that's what counts. When we got home he walked into the house without his crutches, slow, but on his own. He's awake more and talking more, so for that I am really glad. We'll finish chemo the rest of the week and hope that it takes care of the rest the problems that are left. One day at a time!!
Monday, October 11, 2004 8:39 AM CDT Was it possible that we actually were able to plan something and then do it, yes it was. Our trip to Toronto was really nice. There is a lot to do and see there, but when you only have a few free hours to do it, you do what is most important. So…….the guys went to the Hockey Hall of Fame and the girls went shopping. Shane and Adam got their picture taken with the Stanley Cup. Shane was very happy about that. Kayla and Sarah finally found some stores that they could actually afford to by something bigger than a hair clip. So everyone was happy. Before leaving for the Red Green show taping that night Shane was starting to get tired from the already long day, but he kept going. Of course before leaving he had to change into a flannel shirt and khaki pants so he would fit in with Red and so many other guys that would be there dressed for the show. The taping was great and Shane laughed and laughed throughout it. It is really amazing to see how Red and the gang can be up there on stage and go from themselves to their characters so quickly. After the taping everyone exited to the right. We on the other hand went to the left so we could take a few pictures of Shane in front of a couple of the different scenes. At the scene where the lodge meeting takes place we had Shane sit on one of the benches for the members. I was just getting ready to snap the picture and a lady came up and told Shane to go back and sit in Red’s chair. You didn’t have to tell him twice. Hopefully the pictures turn out and I’ll try to get some of them on soon. When we got back to the hotel everyone pretty much crashed. Yesterday we got kind of a later start than we wanted. Still recovering from the long Saturday I guess. Shane was pretty exhausted still but we wanted to try to go up in the Space Needle first and then leave for home. Once we got there and found out that there was an hour wait though, that ended that idea. After a couple more brief stops and me bargaining with them to get out for a couple of Kodak moments (they see the camera come out and they cringe now), we were finally on our way home. A brief vacation, planned and pulled off. Who would of thought…
Saturday, October 2, 2004 Well things are back to our kind of normal. Shane got released late Wednesday afternoon after getting his chemo and he's feeling pretty good. His leg was still really bothering him but has since gotten a lot better (THANK YOU CHEMO!!). We have another appointment with Radiology the week before his next chemo. That should be when it flares up again. They said they'll radiate it then. His blood pressure has now gone from being too low, to being too high. That's more of a normal thing for him though when he gets too many fluids. We're just kind of watching that for right now. We finally have arrangements made to get blood transfusions in Midland this week on Tuesdays and Saturdays. He's not really looking forward to it (he's going to miss going to Ann Arbor). I'm going to hold off until after we've gone before I form my opinion. It's hard being the 'new' people again. You're probably wondering about school and what's happening there. He did miss all this week and I wasn't sure what his feelings were about that. He did get his books out on Thursday and has been reading in them ever since. I'm taking that as a sign that he would like to try and go back. I've told him whatever he decides is fine with us. We'll have to wait and see.
Friday, September 24, 2004 Friday, September 24, 2004
Saturday, September 18, 2004 4:05 PM CDT Oops, it’s been over a week since the last entry, sorry! This was definitely a better week. Believe it or not, Shane managed to get to all of his classes but one this week. YAY!!!!!! He still likes everything a lot. During the week of chemo there was a small mix up and he didn’t get the full amount of Irinotecan each day that he was suppose to. I didn’t notice it until the end of the week and Dr. Yanik was gone that week. I emailed him over the weekend and he checked into it when he got back. The amount missing totaled 2 days worth so we made arrangements for him to get it during the week. Tuesday was the longest day with him getting chemo, platelets and a unit of blood. We had to save the second unit for Wednesday when he was going to get the rest of his chemo. (No, things aren’t finalized to get anything in Midland yet, maybe by the end of this week.) After Wednesday, we didn’t have to go back. That’s kind of unbelievable. Before leaving Mt. Pleasant to come home yesterday we stopped at the Health Service (??) to take his blood in. I figured if it was really low we could go down to Ann Arbor today. His platelets came back at 8,000, which is pretty low, but with no symptoms we decided to wait until Monday to go down. I’m always hoping in the back of my mind that they decide to come back, even slowly, on their own. On Monday after his last class is done we’re going to Ann Arbor to have a CAT done of his shoulders, chest, back, abdomen....to the top of his legs I think. His back/side is what is giving him the most problems right now. They’re going to check to see how the tumor in his back is doing. He’s had the total amount of radiation that he can back there, but they’re looking to see if there are other areas that he may be able to get radiated to give him some relief. Here’s hoping!! On Wednesday he has a bone marrow scheduled. Dr. Yanik wants to see if his bone marrow looks strong enough to increase his chemo dosage. I’m not looking forward to that one. Those were always a breeze up until March when everything happened. They always tell you that this could happen, and that could happen when you get anesthetic. Who would have thought that after having dozens of bone marrows done, he would actually get pneumonia from the anesthetic? Crazy!!
Thursday, September 9, 2004 7:00 a.m. Did I say ‘no pain’ in my last entry? I’m a small believer in jinxes, that’s why I try not to talk about any planned vacations too much in advance. I should have known better to use those words when I wrote last. Saturday we went back to Ann Arbor for his 2nd unit of blood and he also got platelets before we left. Have I ever mentioned how much I dislike that hospital on holiday weekends? What could have been a reasonable day there, ended up an ‘all day there’. Since when does it take 1 ½ hrs to get a CBC result back, or 2 ½ hrs to get a bag of platelets? I really think there was only 1 person working both departments : ) . By the time we got home Saturday night he was already showing signs of things to come. His leg and back were starting to hurt but he managed to get upstairs for the night without his crutches. Sunday morning was a different story. It took his crutches and a bit of effort to come downstairs and then to get comfortable. We doubled his pain patch right away because as the day went on we knew that it would probably get worse. His chemo was due Monday, but because of it being Labor Day, clinic was obviously closed (don’t get me started) and he wouldn’t be able to start it until Tuesday. Of course I had taken the late 6:00 p.m. appointment, thinking that I could go to work and he could go to school first. Sunday ended up being a very looonnnngggg day. He wasn’t getting a complete 4 hour relief from his oxycodone so we started adding half a dose of morphine (liquid, under the tongue) every 2 hours. That seemed to help. Tuesday definitely seemed a lifetime away then. After a pretty restless night, Monday he woke up pretty much the same, maybe a little better. In the afternoon he still was having a hard time getting comfortable. I truly did not want him to have another night like Sunday and things usually progress as the day goes on, so I called down and asked if I could bring him in for pain management. They called back saying that he could be admitted, but he would have to go through emergency first before going up to the floor (YUK!!). I relayed that message to Shane, who I knew would then have second thoughts about going. Plus just thinking about the ride down, would he be able to get comfortable, oh, let’s not forget the holiday traffic heading south. After talking with him and telling him that only he knew how he felt, and he would have to be the one to decide, he decided to go. It wasn’t too bad of a trip really. An hour later and it would have been much worse. We just missed an accident in the construction part of the freeway that had traffic backed up for miles. Going through emergency was surprisingly smooth also and we were up on the floor around 7. It really seems like by then, everything that he had taken the last 24 hours had finally kicked in. He was pretty much off in La La Land. He would fall asleep in the middle of a sentence, wake up 15-20 minutes later continuing whatever it was that he was saying. His pain was better (figures). I think they were kind of wondering why he was even there. He was pretty funny to talk to right then. The night was a breeze and Tuesday after getting his chemo we were let go. Today will be his 3rd day getting it. He’s really not getting the relief that he usually gets, but we’re still hoping that it will kick in soon. Already he’s missed some of his classes, but I’m hoping by next week he’ll be able to get to all of them again. He’s been keeping busy reading in his books and I’ve seen the highlighters flowing quite a bit. Friday, September 3, 2004 8:19 AM CDT One week down, and I think the first semester ends around …….December 13th (ha, ha). Our trip to Ann Arbor last Friday from CMU went fine. We definitely have tacked on a few additional miles with it. For any of you who like oxymoron’s (ex: big baby, awful pretty) I have a new one. Five lane road – speed limit 55. That’s just not right!! Even a four lane divided freeway with a speed limit of 55 isn’t right. They’re both going to kill me and my lead foot. After being a little hesitant about going back on Sunday, Shane started his classes on Monday and liked them both, and his professors. We had to go back to Ann Arbor for more platelets Monday, but his classes end early on M, W, and F so it’s really not too bad. He was back on campus by 9:00. He liked his Tues. and Thurs. classes too, so we’re all happy there. On Monday I called to see if he could get into a different room sometime. I was told that they had an over-abundance of freshman this year, especially males. Some were put in with staff, some were put in rooms with 5, and that they had 8 that for now are stuck in guest rooms. After this week, and when they get an idea of which students are not coming, which ones are not staying, etc., they’ll start moving people around. Shane says now that he doesn’t care if he gets moved or not, but his room is (I think) a health hazard :). These guys are NOT the neatest. Anyone who has seen my house at it’s worst (don’t come over now), their room is 10x’s messier.
Friday, August 27, 2004 7:14 AM CDT We got Shane moved in yesterday. I'm not quite sure what to think of the whole thing, maybe next week I'll have more of an opinion. My first impression though is not a real good one. His room is definitely not the cleanest. From what I overheard walking in, and out, and in, was that was the case for a lot of them though. I think already he and I would like to and get him in a different room if one becomes available. Right now he is in with 2 Resident Assistants. It was either that or a 4 bedroom dorm with seperate bedrooms, but no freshman. A 2 room, 4 person dorm with 5 people, or where he is at with all freshman in the hall. He can move if something becomes available, and they say after the first couple of weeks is when they'll know. I think the thing that may bother him the most is that his roommates are both a couple of years older than him. We'll see. Wednesday, August 18, 2004 5:49 AM CDT Today is August 18, and it is the 10th anniversary of us entering this world of cancer. The day is still very clear. Where we were (on vacation of course), what we were doing, how it all happened. At times it seems like a lifetime ago. At other times it seems like it was just yesterday. We have been so very fortunate over the years. There are so many, the majority really, of the kids that we have gotten to know over the years with the same disease as Shane that have not made it. We truly have been very lucky.
Tuesday, August 10, 2004 Another ‘I’m sorry’ for the delay in an update. Last week finished up okay with Shane’s chemo. We ended up staying overnight one night because we got out of clinic late and then had an early appointment the next day. I really don’t like doing that because it seems like such a waste of money for the amount of time that you’re actually in the hotel room. I think the driving back and forth was getting to both of us a little that day though. He ended up getting platelets on Tuesday and we were hoping that that would be enough to get him to this week. When I took his blood in on Thursday they came back at 15,000. That’s low, but he wasn’t having any symptoms so we thought we would hold out and hope that they might come up on their own (ha, ha, right). On Thursday we made the trip to CMU and got a lot of questions answered. The girl in Admissions was with us for almost 2 hours and contacted different departments for answers to questions that she didn’t know. Through the Disability Dept. we found out that they can arrange for Shane to be picked up at his dorm and dropped off at whatever building one of his classes may be at if he wants or needs it. That was one of my big worries, all of the walking that he would have to do. The Housing Dept. explained that should he need to drop after trying this out, they would be able to refund for the days he wouldn’t be there. The only one that we’re not too sure of is for his actual classes. To get a refund on those he would have only one week to decide if he has too full of a load and would like to drop any, or if after some time it’s decided that he just can’t do this. So…… after our time there it was decided that he would try this. We go back on Wednesday for him to get his classes. Now some of you may be thinking, “Good for you Shane, you go for it.” Others may be thinking, “What in the world are you guys thinking of.” Me, I’m thinking both. We’re going to take it day by day just like everything else and see what happens.
Wednesday, August 4, 2004 Some of you may have already heard that little Alex Scott became an angel on Sunday. It was briefly mentioned on the Today show and CNN on Monday, and numerous newspaper articles have come out since then. Alex's goal was to raise $1,000,000 towards pediatric cancer research in the year 2004. She has raised over $700,000 of that goal so far. If any of you are willing to still help her reach that goal there are couple of ways. You can go to http://www.alexslemonade.com , for Alex's lemonade site or http://www.amazon.com/exec/obidos/tg/detail/-/0975320009/qid=1091500042/sr=8-1/ref=pd_ka_1/002-2181455-0655257?v=glance&s=books&n=507846 , for Alex's book. It's a very cute rhyming book and a lot of the proceeds go towards her goal (just copy and paste in your address bar). Once there you will find all of the information that you need. Alex was such a special, strong little girl. We have truly lost a strong voice for research into children's cancer.
Sunday, July 25, 2004 8:35 PM CDT The last week went by kind of fast. We were able to go to St. Helen last Saturday and had a nice time catching up with our friends at the graduation party. On Wednesday Shane needed platelets, which wasn't a surprise, but he needed them again on Friday also, which was a surprise. We were going down to Ann Arbor anyhow on Friday to have a talk with Dr. Yanik about if there was anything out there that Shane could try that was new, or if we should just keep him on the Irinotecan and maybe change the schedule or the dosage of it. Shane was in on the meeting, and at times Dr. Yanik was very straight forward. He told Shane that there really isn't any new studies for someone like him. Someone that has gone through so many previous chemos and treatments and to still be here 10 years from diagnosis with active disease is kind of rare. The biggest reason that he doesn't qualify for anything new is because his counts are too low compared to what they have to be. We kind of knew that. What we did decide is to maybe add another oral chemo (Temazolomide??) with his Irinotecan. Dr. Yanik asked Shane if he thought that his chemo now was working as good as it use to and Shane told him not really. That he use to get 3 wks relief after treatments and now he probably gets 1 1/2 - 2 weeks relief. We could start his next course tomorrow (3 wks from his last), but we've decided to try and wait one more week so his counts can come up maybe a little more. He's feeling okay right now, but still has the pain in his side. It's manageable though with his medicine and putting heat on it. He's been busy writing out "Thank You's" from graduation. I do believe he's down to the last few finally (mind you, not without complaining of getting writers cramp).
Saturday, July 17, 2004 8:25 AM CDT I'm sorry that it has been so long since I've updated. This was a long week. Everytime I thought about writing things would change slightly, so I would put it off to see what the morning would bring. It was a back and forth week. Shane's hip and leg pain were taken care of with his chemo. On Monday morning his side started hurting, which is sort of an old pain that usually starts the week after chemo for some reason (not always though). Then there's the usual nausea the week after chemo. Usually these two things gradually go away as the week goes on. You guessed it, for some reason this week they seemed to want to linger. Just when you thought it was going away, it came back. On Tuesday I took his blood in thinking if he needed it we would go on Wednesday (a good clinic day). I got a call at 5 saying they were low (platelets - 2000, yikes!) and for me to take him to the bed side (adults side) when we came. I asked why he couldn't go to the pediatric side like we always do and she said because they would be closed when we got there. The light finally went off in my head, HELLO!!, they want you to go tonight still. So, we got on the road, got him his platelets, and we were home by 10:30. It really wasn't too bad and he seemed to feel a little better. Coming home we got to drive through this huge storm that was traveling up the freeway it seemed. I love storms and this one was really exciting to watch. The lightning show was better than the Fourth of July fireworks. It started to hail pretty good as we came up to Clio so I got off at that exit and found a bank to pull into the drive through to get out of it for a bit. Shane had been sleeping through the whole thing, but after we had been stopped for couple of minutes I hear a groggy voice in the back say, "Why are we sitting at a bank", quite funny. Wednesday and Thursday it was back and forth. Yes he's better, no he's not,...... he wasn't having bad pain, just real uncomfortable at times. Then of course his meds made him sleep a lot. Thursday I took his blood in to see where he was before the weekend and sure enough he needed more. This time it was red cells and platelets so we knew it would be an all-dayer. Last night when we got home though he seemed more awake, talkative and didn't ask for any pain medicine before he went to bed. I hope that's a good sign for today when he gets up.
Wednesday, July 7, 2004 8:18 PM CDT Shane's 2nd day of chemo is over. It still amazes me the almost instant relief that he gets after receiving even his first dose. Yesterday morning it took almost a half hour to get him from the couch to the car. When we got to the hospital I had the car valet parked so I could get him into a wheelchair and inside right away. His blood tests came back showing that his platelets were at 6,000, and his red cells were at 7,000. Not very good, so after he got his chemo he got a couple of transfusions too. By the time we left there he was already feeling better. Today, not only did he not need a wheelchair, but he ditched his crutches too. It truly is amazing how quickly his symptoms sometimes go away.
Monday, July 5, 2004 Things seem a little better today. Shane is more awake, alert, and talking again. He still hurts when he goes to get off of the couch, but not like it was over the weekend. Tomorrow, and chemo, doesn't seem so far away now. **Some new pictures have been added finally**
Tuesday, June 22, 2004 7:48 AM CDT Not a lot of news here. Sometimes no news, is good news. Shane is feeling okay. Chemo last week went smooth as usual. He was told to bring in his cap and gown on Monday, which he did. Then before we left he was told to put it on to model. Can you think of a better time for some Kodak moments? He got another low dose this time so he should be feeling good for this weekend and his graduation party. That's what's keeping us all pretty busy this week. We all gave him a hard time a few days ago because I was in the front yard working in a garden and he came outside (doesn't happen that much) and said he was getting that "b" word ("Bored" - My kids have never been allowed to say that word because I've always promised them that I could find something to do to keep them busy, ha, ha), anyhow, I asked him if he would/could go out to the shed to get me a rake. He did, but came back with a leaf rake. He said the shed was locked and that one was outside. Adam went to the shed and came back with the right one saying that it wasn’t locked at all but just stuck a little. We then kind of all gave Shane a hard time about how he must have forgotten how to open the shed since it’s been so long since he’s been back there, and how we were surprised that he remembered where the shed even was. He laughed and I think he said that he was then going in for a nap because his getting the rake had overdone it for him for the day already. : )
Sunday, June 13, 2004 What a perfect day yesterday was. In the morning the weather looked like it was going to be the first 'rainy day graduation' that their school has had in years. By noon it had cleared up and it ended up being one of the coolest (temperature) graduations in quite a while. Valedictorians, the Salutatorian, and Student Senate sat in the front row. Since Shane was on Student Senate he was up there where we could see him easily. Their row was the last one to get called up, and the way they were seated Shane was the last out of everyone to get his. A long time friend of our family is a school board member so he was able to give Shane his diploma. As soon as it was handed to him everyone rose to their feet. It was a special time that happened so quick that between that and me concentrating on running the camera, I didn't have time to think a lot about it, so not a tear was shed. He was happy and fine, so I was happy and fine. After the ceremony was over they all marched out then they kind of mingled outside for awhile. Quite a few Kodak moments were captured. I'll have to add new pictures as soon as I feel up to fighting with the scanner again.
Friday, June 11, 2004 3:56 PM CDT Tomorrow is the big day!! It's been a busy week, but a nice week. Tuesday night was Baccalaureate. It was really nice to get a sort of 'sneak preview' of what graduation day will be like with them in their gowns. They had a few teachers speak and give them advice for their future. Their principal read outloud the article that she had written for their last school newspaper, then Mr. Benner was there and sang his song to Shane for everyone. This time I had my camera running. When it was all over and the kids were in the commons talking and taking pictures, Shane was presented with a large copy of the class picture that was taken a few weeks ago. It had been matted and there were signatures all over the matting, then framed. What a special gift. He made it to all 3 days of school this week. I was glad that he was able to see everyone one more time before school got out. Sunday, June 6, 2004 12:32 AM CDT The rest of the week went okay after surviving the holiday weekend in DC :(. Shane started Tuesday with his leg hurting (I'm surprised that it waited that long). Thursday we went to Ann Arbor for platelets and he told them all about his trip. Thursday night was Kayla's vocal concert and we made it back in time for that. I didn't want him to have to sit through the whole thing so he and Randy stayed home and I called them when it was close to Kayla's group and they came then. He was able to go to school all day on Friday and the band performed at the assembly in the afternoon. This week is Baccalaureate on Tuesday night, the last day of school on Wednesday, then graduation on Saturday (I am/not looking forward to this week). Dr. Yanik had already told me that we could bring Shane in sometime this week to start his chemo early (he's not suppose to start until the 14th) if he needed it to feel good for graduation. We'll probably have to take him up on that offer. This last week the last edition of the high school's newspaper came out. On the front page their principal always writes an article to the students. Below is what was in this edition. It says a lot about Shane, Mr. Benner (the teacher who wrote the song for Shane), and the students at their school.
Monday, February 28, 2005
Chris became and Angel this morning. Will you please keep his family in your prayers.
Saturday, February 26, 2005
I really seem to be having a hard time trying to figure out what to write about anymore. This whole site was set up to let everyone know how Shane was doing when he was missing school, or for friends that we’ve met along the way that we didn’t see anymore. I know that I still go to many sites of children that are Angels now just to see how their families are doing. I’m sure that’s what everyone that still comes here is doing also. We are doing ‘okay’. I should change that word and start using ‘fine’ because that’s always what Shane would say when you asked him how he was. No matter how he felt, he would always say ‘fine’. If he was really feeling good you would get a ‘Just Peachy' out of him. There’s still no rhyme or reason to when the tears come. I just make sure that I always have Visine and make-up with me at all times. The other morning I dropped Kayla and Adam off at the high school. We had been goofing around on the way there as usual. I only had to drive 300 plus feet farther to get to my school. As I made the turn to get there a Toby Keith song came on the radio and the tears just started flowing. I can’t imagine how I looked as I scrambled to change the radio station before more of the song played. It wasn’t even a sad song, but a song that Shane and I had re-written the words to on one of our many trips to Ann Arbor on the freeway. I’ve heard it since then and it did nothing but bring a smile to my face. Who knows?????
The Saturday before Valentine’s Day Kayla took her ACT test. The poor girl had to reschedule it twice before. The first time I think was last spring when the tumors were found in Shane’s head and things weren’t looking good. She was suppose to take it that weekend, so we rescheduled it then for Dec. 11th. That was one week after Shane’s funeral and I couldn’t make her go then, so we rescheduled it for this time. No scores back yet, here’s hoping!! Adam is getting ready for the baseball season. He goes once a week to Freeland for a lesson, or training. I’m not sure what they call it. He’s still into his after school workouts, plus some batting practice in there, so he’s a busy guy. I’m kind of looking forward to his getting his license the first week in April. I won’t have to do so much running then. Randy went on a little trip to Vegas a week ago with mostly family, and an old friend (Thank you Keith, ha, ha). Vegas just isn’t a place that I have the urge to see so I stayed home. He won pretty big when he first got there, so he used that money pretty much the rest of the time that he was there (that’s the way to do it). Last Friday I went out after school with some of the people that I work with. I haven’t done anything like that since the kids were born (that’s a looonnngggg time). It was a lot of fun, and it came at a good time. Last week just seemed like I took a couple of large steps backwards instead of forwards. Saturday morning though (after my night out) when I got up I seemed to have more energy than I’ve had in a long time. That was a nice change. All the little darlings at school are still keeping me busy (and entertained sometimes), enough during the day that I look forward to going to work. Figures though, now that I can work and don’t need to take time off, there’s a chance that my job for next year will be in jeopardy. It all depends on what kind of cuts the district makes and how all of the bumping goes. When you have to cut $1.5 million from your budget there’s going to be some jobs eliminated. Maybe the Govenor will step in and help us all out somehow (that’s a joke, ha, ha). I’m not one to worry about, or lose sleep over stuff like that anymore. I’ve had the worst thing happen to me in my life already. This will be a piece of cake no matter how it goes.
The mom that runs Beebo's site that’s listed below has re-done part of the site. She has the kids broken down into categories. Warriors (for those who are still fighting), NED (for those that have No Evidence of Disease), and NB Wings. She lives in the UK and has two toddler boys, so she’s busy. Jamie, her eldest son, is right now NED of Neuroblastoma. Yay Jamie!! ......That’s all for now here. Thank you everyone for still checking in on us. It means a lot. Please will you remember in your prayers all of the kids that are having a rough time right now, especially Alexia and Chris. Also, will you please remember all the families that have lost, and are currently losing their children. Not just from Neuroblastoma, but from so many other cancers also. Thank you again for everything!!
I am SO looking forward to SPRING!!
(Oh, the Christmas tree is still out back. I'm sure Shane is lovin it!!)
Thursday, February 3, 2005
It’s been awhile hasn’t it? Our daily lives here have changed so much in some ways, but in other ways they are pretty much the same. My life has definitely slowed down so much to the point where I don’t really like it on some days. Too much free time is not always a good thing (can’t kids go to school on the weekends so that I can go to work? Ha,ha!). It’s not that I don’t have plenty to do around here either. There are some areas in our house that probably have a good many years of neglect that I could/should be working on. I find myself starting things, but that’s as far as it gets. Motivation is a big problem. I’m hoping that this 'winter blah’s' feeling will go away soon. I joined a gym about a month ago and went for a couple of weeks, but then I caught the bug that everyone else is walking around with, and after that I had a small issue with my blood pressure (imagine that), so I haven’t been back in awhile. Hopefully soon I’ll get the ambition and the “I want to do this” attitude back.
The plans for Shane’s bench were sent in. We just need to wait now for them to send back their final drawings of it for our approval before they will start to make it. We’re still hoping to have it out at the cemetery for Memorial Day. That might not be possible, but we can hope. We did manage to get a little bit of everything that Shane really loved on it. The front side that will face the road will have his picture in the middle (with KoKo (we had to~big smile), it's on the photo page and was used for his obituary), on the left of that will be a saxophone and directing wand with musical notes around them. On the right side of his picture will be “Class of 2004” and “J.G.H.S. Forever” with a picture of a Bobcat in between them. That whole side is pretty much everything that he had on his class ring. I still feel kind of guilty about keeping that, but I also love having it. I guess it’s a source of comfort for me at times. The other side of the bench will have a large block “M” on it (of course). On the left of that there will be the picture of Shane at a U of M game (it's up above) when he was in 8th grade after his relapse. It has been one of my favorites forever - the hat, the sunglasses, the foam finger, the big smile. Under the picture will be “GO BLUE!!”. Last, at the top of the bench on each side will be a small Red Wings logo. We almost left it like that, but then I thought that we only get one chance to get this right, so I called them back and said that I had to add one more thing……… on the top of the bench in the middle, the words “Carpe Ductum” will be there. Not many of you have probably heard of that phrase (I could tell the person I was talking to on the phone hadn't). You’ve probably heard of 'Carpe Diem', which means “Seize the day”. That is something that we also could have easily put on Shane's bench because that is exactly how Shane lived each day of his life. 'Carpe Ductum' though comes from his favorite 'guy' show, “Red Green”, and it means “Seize the tape”. He would definitely LOVE it!!
Right now Kayla is busy filling out scholarship applications, writing essays for those scholarships, and counting the days until graduation (I’m not sure if she’s happily counting them or not). Adam is busy already getting ready for the baseball season. He has lessons (?) twice a week out of town, conditioning twice a week, batting practice, and then just weight lifting after school. He loves that stuff. It will be really nice when he gets his drivers license the first of April.
A week ago a friend of mine was going with her parents to Ann Arbor for an appointment that they had at the hospital (they could use some prayers also). She delivered a card with a note in it to the nurses in clinic for me. The note pretty much saying how we were doing and that I missed them. That same day in the mail I got 2 cards with notes from 2 people there. Since then I’ve also gotten a couple of emails from different ones there. I think at times it has to be pretty hard for them not seeing certain kids come in that they’ve gotten to really know over the years. They are such special people that I miss a lot. I think I’m definitely going to have to go down again and visit them soon. I need to get up to the in-patient floor this time though too and hopefully be able to see some of Shane’s nurses there.
Thank you everyone for your prayers for Lexy and Joshua. Please don’t stop now. Thank you also for still checking in on us, thinking about us, and the messages that you leave. Some days, hours, are hard, but for the majority of the time we are okay. It’s still just, “One day at a time”.
Oh, the Christmas tree is still in the back yard :)
Saturday, January 15, 2005
I really don’t have too much that’s interesting to write about. Kayla, Adam and I have been back to school for a couple of weeks now. We’ve also had 1 whole day and 2 hours off for bad weather already. We look forward to those days. School for me has been a nice get-a-way. I love working with the kids. Some of them were very straight forward when I got back and asked questions about Shane, his dying, and did I miss him. Some of them just said that they were sorry. They can all be so funny at times too, it’s just what I need to be around right now. This week one of the Social Workers from our hospice called to see how we are doing. While we were on the phone she asked if Kayla would want to help out at a Day Camp that they're putting on for kids (4 - 13) who have lost a parent. Kayla wants to go into something (Speech Pathology or Child Life) when she gets out of high school so this would be a great thing for her to do. I may see if Adam could be of any use to them too. They both need volunteer work hours, and I just think that it's something that they should do, and probably would like.
We have one more place to go to about the bench (marker) for Shane for out at the cemetery. We have a lot that we want to put on it to cover who Shane was and what he liked, but we don’t want to have too much on it. On the side that faces the road in the center will be a picture of Shane with his name, DOB and DOD underneath it. On the right of that we’re thinking of having a saxophone with some musical notes coming out of it. On the left side we want “Class of 2004”, and either “Once a Bobcat, Always a Bobcat” (which is what was embroidered on the inside panel of his casket, and is something his high school principal says), or we might have J.G.H.S. Forever. Which is what Shane had engraved on the inside of his class ring. On the opposite side of the bench (opposite the road) we want a large block “M” in the middle with the word “Go” on one side and “Blue” on the other. On the actual seat part we’re going to put something, but I’m not quite sure what yet. I know the one person that we talked to said that if you put a lot on the top that dirt and rain will get caught in it. We have some things to think about, and I need to see some of the ideas on paper before we decide. I know that I want to do it soon so maybe they can get it in by Shane’s birthday, or the latest, Memorial Day.
Things here are “okay”. I like that word, you’re not committing either way when you use it. I was at school the other day and I was going to bring home a Social Studies worksheet to do. I wanted to get the answers before the kids I work with came in the next day. For a moment I had a little memory lapse and thought that I would just ask Shane for the answers (History was definitely his subject). It was a small lapse and I quickly remembered that I would have to do it on my own. I’m going to have to resort to reading directions to things, and looking things up now. Shane was always the one that we would ask for homework help, phone numbers, or just plain trivia……… The last of our Christmas traditions was fulfilled when we took the tree down on Sunday. Every year when we took the tree down we hauled it out the back door so the needles wouldn’t get spread through the whole house. For some reason it would then sit out there for 1, 2, 3 weeks, months…(just kidding). Last year we took it down on a Sunday and Randy said that we had to take it right out to the road for the garbage man that came on Monday. Shane strongly disagreed saying that it was a tradition for it to be out back for at least a week. After much protesting from Randy, he still lost, and the tree stayed out back. This year Adam, Kayla, and I knew where the tree was going to go when we were finished taking it apart, but when Randy came home from work he thought that it was going out to the road again……… It is out on the deck where it belongs, for a little while anyhow (smile).
There was some good news this week in our NB family. Christi’s MIBG scan came back clean again (YAY!!). They weren’t able to do a bone marrow test (which her last one still showed a little disease) because she had the flu, but at least the test that they did do came back with good results. YAY!!!! (again)……….Please will you keep saying prayers for all of the kids who are still fighting, having rough times right now (Josh, Alexia), the angels, and all the families who have had cancer touch their lives.
Thank you so much for still checking in on us.
(Anyone that made any donations to us, or any of the foundations/organizations when Shane died, they have all been sent in and should be cleared now. Thank you so much for being so generous!!)
Saturday, January 1, 2005 11:18 AM
HAPPY NEW YEAR!!!
Does anyone think that angels are given day passes out of heaven to go to football games?? Especially if it's the Rose Bowl game, and Michigan is playing, and there's a certain angel up there that would be just itching to be there??? I think we all know where Shane's attention will be this afternoon at 4:30. GO BLUE !!!
Christmas day went a lot better than I thought it would. I think the hardest part was watching 2 kids come down the stairs instead of three. Tradition, which we did still do, is I make them wait at the top of the stairs every year until everything is just so (bad mom). Sometimes they would wait for what seemed like forever to them. Once things are in place and the camera is ready, then they come down. It definitely took less time this year before all of the presents were opened because Shane use to do it very slowly every year. He would slowly open one, look at it, comment, look at it some more, read everything that was on the outside of whatever it was, comment, look to see what the other two were doing, then get another one to open. Very funny! Church was at 10 and I wasn't sure how that would go, but I guess I was to the point where I was so sick of Christmas music that hearing the traditional songs didn't bother me. I could still picture Shane sitting on my left side where he always did. I knew the big test would be the very last song which was probably his all-time favorite church song. We even talked about how we should have sung it at Shane's funeral if we were trying to use all of his favorites then, but it's definitely a Christmas song. For a few years we participated in the kids/family choir on Christmas day. I loved it!! The last song is always the same, "Great Day in Bethlehem." Now this song is not only a singing song, but you clap at different times. I use to laugh watching Shane when he was little during this song. He would be holding the words on the handout that was given for Christmas service. When it would come time to clap he would realize it was time, try to put the pamphlet under his arm to clap, reach up to clap and realize he had missed it, grab the pamphlet from under his arm to look at only to realize it was almost time to clap again, it went back and forth like that for awhile until he memorized the song. Very funny. Anyhow, at Christmas service this year it came time to sing the song. Part way through it was starting to get to me when Kayla elbowed me, leaned over and said, "That boy next to me (Adam), thinks he's too cool to clap in church." THANK YOU KAYLA!! She brought me back. I leaned over and looked at Adam and raised my eyebrows. He kind of gave me the "What" look. I don't think he ever did clap. Once we got out to the car Kayla started giving him a hard time about it. Kiddingly telling him that he knew that that was Shane's favorite song and how it was a dis-honor to him. Gotta love teens!! Before going out to Randy's mom's for Christmas we went to the cemetery. While we were standing out there Kayla and I made Adam sing the song and clap. We could picture Shane just rolling his eyes and laughing at us. The rest of the day went well really. On Shane's birthday last year (wow it is 2005 isn't it) all of the cousins on that side of the family were over plus one longtime boyfriend. I got a really good picture of all of them together. A couple of weeks ago I found a picture frame that said "Family" on it and I made copies of the picture and gave each one one of them. For Kayla and Adam for Christmas I also made up a frame (you can do a lot with scrap booking materials) that said 'sister' with other things on it, and put the picture of her and Shane on the couch from last year in it. She's laying on him sort of and he's got his arm around her. On Adam's I put 'brother' and then 'The Big Game' up at the top and put the last picture of him and Shane with their U of M/Spartan flags in it. Pictures are definitely a treasure.
The rest of the week really did kind of fly by. I didn't get some things done that I had wanted to, but it's not going anywhere. The weather yesterday was such a nice surprise. Not only was the sun out a lot, but it got to 56 here. It was like our little preview of spring. One of Shane's friends, Diane, had gotten a hold of me earlier in the week and asked if I could show her where Shane is at out at the cemetery. She's been finding pictures that she has of Shane and getting copies to me. Thanks Diane! Yesterday was a perfect weather day to show her. We stood out there and talked for awhile. It's amazing to see the snow completely gone out there right now.
Last night was pretty non-eventful. Kayla was gone, Adam was gone, Randy had to work today so he went to bed early. Shane would not have been happy with the selection of, or lack of, shows/movies on T.V. last night. I pretty much sat on the floor going through one bin of pictures and trying to sort them somehow (ha, ha). New Years in the past, especially when they were a lot younger, the kids would each have a friend come over for the night. Shane always had 2 because Sean and Ben (his twin friends from grade school), definitely always came together. That night was always a lot of fun. The last time Shane did anything on New Years was 2 years ago he went to Stacey's to eat, then she came with us, Adam and a friend, Kayla and Markie, and Brice next door, and we all went to a bowling night/party until after midnight. He had a lot of fun. (You know, that may have been 3 years ago ??) Last year he didn't feel like going anywhere so he stayed home, watched T.V., ate, and was on the computer a lot. I think the worst part of last night was going to beebo’s site (link below) to check on some other kids and seeing that Shane’s picture had been taken off along with a few others. I knew that it was going to happen sometime, I guess I wasn’t really ready for it though.
Well that's all for now. Monday I go back to work (school). I'm not sure how that's going to go, we'll see. I know staying around here I'm not getting much accomplished. There's really not much news to report on anymore so don't be surprised if the entries start having more time in between them. Oh…… any family reading this that maybe taking their child to Sloan Kettering, keep track of EVERYTHING. Days that you go to clinic, who you see (Dr., Nurse Practioner, just a nurse), what they do (blood draw, weight, actual visual with someone), any tests, any drugs given........ you get the idea. We've (Randy) been going back and forth with them for a couple of months now for a bill from over a year ago. It showed up during the summer for the first time and it's been a problem ever since. There are doctor visits on there that I really don't think we ever had. It's back from Sept. of 2003 so how can anyone be sure. The insurance company is involved now and trying to help so that's good.
I hope everyone had a good holiday season and many Kodak moments were captured. They are a must!! Please everyone, will you keep saying prayers for the families that have lost children, for the kids that are having a rough time right now (Alexia), those kids that are doing well, but still fighting (Christi, good luck on your up-coming scans. They'll be good, believe it), and for those that are in remission (that they stay that way). We have one more Christmas get-together tomorrow at my mother's and then we are done for the year (it's hard to get everyone's schedule together). This afternoon, of course, we'll (probably not Kayla: ) ) be watching the Rose Bowl and thinking of Shane. GO BLUE !!!!!
HAPPY NEW YEAR EVERYONE!!!
(As I'm typing this entry I hear the "Victors". I look up and there is the U of M marching band on T.V. at the Rose Bowl Parade. Thank you Shane!!)
Things here are okay. It seems like there are times that you just run on auto pilot because there are things that you just have to do whether you feel like it or not. I mentioned Christmas shopping in my last entry and how it was easier than I thought it would be. I didn’t realize how much my mind must have been wandering that day until I came home and found out that I bought Adam a DVD at one store, then turned around 2 stores later and bought the same thing. I did the exact same thing with a music CD that he wanted too DA!! It wasn't even Christmas yet and I already had returns….. Shane had another special project that he started way back in September. While he was in-patient from the bad infection that he had, his friend Stacy had come to see him in Ann Arbor from Ferris. While they were talking she told him that they didn’t get the show “Boy Meets World” on her campus (Shane’s favorite show and one of her favorites too. Has anyone ever noticed that Shane had the Eric Mathews look going for his senior pictures right before his hair fell out??). Well… Shane just thought that that was so wrong and he decided that when he got home he would start taping the shows for her for Christmas. His hospice nurse would usually be over at our house during the time that the show would start, and more than once she had to remind him to start recording. It was funny. The day after Shane’s funeral I wanted Stacy to be able to go back to school with Shane’s gift. I took over to her house 3, 6 hour tapes of “Boy Meets World”. Shane would have loved the look on her face when she got them. Her mother called me later to thank me for bringing them over and said that that was exactly what Stacy had needed. She said also that Stacy had figured it out and that there should be around 36 shows altogether. Shane thought of the perfect gift for her…..
With today being Christmas, and New Years right around the corner, I find myself in the middle of this big counting game. The first Christmas, the first New Years, and on and on it will go I'm sure. But I do know, and I try so hard to follow his lead, that Shane lived the last 10 years of his life not wasting time wondering about if he was going to die or not. I truly believe that he would be the first person to tell us to not spend a lot of time grieving for him. Sometimes that’s a hard thing not to do. But when it happens I force myself to think of a happy time when he was here, or to look at one of the many Kodak moments that we have up around the house with him grinning from ear to ear, and it pushes the sad feeling away and replaces it with a smile…Still we live ~ “One day at a time.”
I am going to end this entry with a very special prayer request. A few days before Shane died a little boy named Carl, who was 4, died from NB. Since Carl there have been 8 other kids (that I know of), counting Shane, that have also died from NB. The last two were little 6 and 4 year olds (Trey and Sophia), that just died on Wed. and Thurs. I am asking that you please say some extra prayers for all of these families. We were so fortunate to have Shane with us for so many years with active disease. I really can’t imagine how families that have lost young children, especially this time of year, can find the strength that they need to get through this. Maybe your prayers can help them. If after reading today's entry you're feeling a little sad now, just look up at all the pictures at the top of the page and see Shane's (and Kayla's and Adam's) smiling face....I truly believe that all of our angels are happy. It's just that we (their families that are left here without them), need to keep remembering that.
Thank you everyone for still thinking of us.
MERRY CHRISTMAS!!
Right now we are doing okay. It is just such an unexplainable feeling to not have Shane here. To not hear his voice, or see him sitting on his perch. I still watch a lot of the shows that he use to watch (habit I guess). I started Christmas shopping yesterday. I really thought that it would be hard, but I saw so many things that reminded me of him, I just had to smile. He would have LOVED the new dvd’s of ALL of Pee Wee’s Playhouse, and the new DVD’s of ALL the episodes of Quantum Leap for one of the seasons. There were so many things I saw yesterday that brought him right back beside me, it was almost nice shopping. I bought Kayla and Adam a journal type book for them to write in last week. I told them that even though it seems like we will always remember Shane, and all our memories of our time together, over time we will start to forget some things. I asked them to try to write at least one memory of Shane a day in it. They’ll be able to go back later on and read them....We looked for a Christmas tree the other day. For those of you who weren’t at Shane’s funeral, when Kayla was asked by Sister Ginny what she wouldn’t want people to forget about Shane, she answered that he always got to pick the Christmas tree every year (she wasn’t exaggerating either (oh, also that she was his favorite)). Well I told her that she could pick whatever tree she wanted this year. It could even be a Charlie Brown tree. We left 3 places with nothing. They were pretty nasty. We laughed and said that Shane must have had something to do with it. We’re going to try again this weekend....Through the summer Shane, Adam and I got hooked on "Pitch Black Mt. Dew." It is soooooo good. I consider it my daily dose of coffee. Anyhow, it was a temporary thing, only out for a certain amount of time. Well that time is over and it has been so hard to find lately. I received a hot tip today that a nearby store was selling out of it. You could get 24, 20 oz. bottles for $4.00. I went there to stock up for the winter, and in walked Shane's hospice nurse. I haven't seen her since at the funeral home. She said she had been thinking of us today. When I pointed to the Mt. Dew and said why I was there she laughed. She knew it was Shane's favorite. We just found out that in a distant way her and I are related. My first cousin is her brother-in-law. Small world!! I guess that’s pretty much it for now. I’m sure there’s more that I missed, but my short-term memory isn’t working properly these days (I was warned about that).
Thank you so much for still checking in on us and for your messages (Stacy, you are too funny!). There have been some other deaths in our NB family recently. There are also a couple of kids who are not getting good news and could really use some prayers sent their way. Please don’t stop now.
The rest of the week went a little easier than I thought it would. Wednesday was taken up with making arrangements. Kayla and Adam went to the funeral home with us. We chose a casket that on the corners we could put these musical pages with a musical signature on it. Above his head the panel was Embroidered with a large JG, then in the corner it had "Class of 2004" and "Once a Bobcat, always a Bobcat." At the foot of his casket we would have his big U of M flag laying over it. At the cemetery we managed to move the plots that we had purchased back in 92 (The price has gone from $1600 then, to $3400 now). We now have our sites close to where my dad is buried. I was really happy about that. Wednesday night I went to church to pick out the readings and to let Sister Ginny know which songs we would like. Shane had some favorites that I wanted to make sure we sung. Thursday morning I put together a sort of program that covered the mass for his funeral, but that was also all about Shane. His favorite foods, TV shows, sports, sayings....and things we'll miss most about him. I'll try to scan it and get it on here sometime. When it came time to go to the funeral home on Thursday night I didn't know what to expect. There was no rhyme or reason to my crying, or what would get it started, so I wasn't quite sure what was going to happen during the evening showing. Kayla, Adam, Randy and I were let in first. I stayed back and let them go up for a minute. When I got up there and saw him I just smiled. He looked so at peace and had this little smirky smile on his face (Adam said it was the look he would give when Kayla would say something stupid). It really was the best I've seen him in awhile (relaxed, comfortable). The rest of the night went okay. Friday was the long day, but even that went better than I thought. The hardest times both nights were when some of his friends went up and they would have a hard time, which then ran over onto me. Saturday came and it was time to say good-bye. For Pall Bearers we asked two of Shane's good friends, 2 uncles, and 3 of his high school teachers. The reader for the mass was one of Shane's 5th grade teachers (he would have loved it), and the gifts were brought up by 2 of his dear friends, Stacy and Stacy. Shane was laying at the back of the church. He had his Red Green T-shirt on under his MICHIGAN Hawaiian shirt, jean shorts, and his MICHIGAN sandals. We had put in with him his drum major whistle, senior pictures of friends, his hospital blue card (never leave home without it), a hospital bracelet, graduation tassel, his lucky U of M ball cap, his U of M pillow, his Possum Lodge card and patch (Red Green), a picture his cousin Brooke had colored for him (She wanted to take him for Show and Tell a couple of weeks ago. He was excited about going, but wasn't feeling good that day) pictures of him, Kayla and Adam together, and of course his favorite....his monkey KoKo. Whom he never went anywhere without (except CMU, I think he missed the monkey more than us back then). While sister Ginny was doing the final blessing, I just kept looking at the pictures of the 3 of them together, goofing around and smiling, and it made me feel good inside. I read the Eulogy that I had written (most of it was written by a friend of Shane's). It wasn't all fancy or sad. It was Shane! Here is what it said:
I’ve been friends with Shane since the 2nd grade when he was first diagnosed. I can’t describe how much of an impact he has had on my life, my family and the community. I remember how scared I was when I found out that someone my age had a life threatening disease and how easily it could be me or anyone else. I thought about how I would react if it were me. Then as I got to know Shane, he was this incredibly optimistic and outgoing person, more so than anyone else I knew. I couldn’t believe it! I looked around at how selfish we all were to let little things bother us so much, when all the while, here is Shane, battling for his life, and the most enthusiastic person I know.
I remember the assemblies for Shane and the Spaghetti Dinners that brought everyone together. The time we all were allowed to wear baseball hats to school in the 3rd grade (a big no-no any other time) so Shane wouldn’t feel out of place. The countless banners and cards made in class to wish Shane the best of luck. I remember being jealous of Shane’s “Red Green Show” string art he made in Mr. Wackerle’s 7th grade class (mine didn’t turn out so good). In the 9th grade Shane was my locker partner, I recall countless conversations over various topics. In particular our excitement over the Red Wings (think they won the cup that year). I remember sitting by Shane in Hefe’s Spanish class and Shane always managing to translate “no megusta” before anyone else. I’ll always remember Shane pleading with Mr. Miller to teach FST for our junior year. I think he even wrote Mr. Miller a book on why he should! Shane always had a band story to tell and it always made me feel like I was missing out on the greatest class ever.
Along with all the particular memories of Shane, I’ll always remember his love for life and how he spread it on to everyone else. He was a born leader and was someone everyone could look up to. He always had a smile on his face and of course, who could forget his laugh, Shane’s laugh was one in a million. If you ever had a class with Shane he would always light it up and make it fun. Shane taught me just how great life really is and how easily we can take it for granted. Shane will live on stronger than ever in all of our memories and as an inspiration to all of us.
Thank you so much Josh for writing this.......I did come up with a couple of things.
The last couple of weeks for Shane were very rough, and his last couple of days were pretty bad. We watched his life being taken, bit by bit without being able to do anything for him but make him as comfortable as possible. To me that was the worst part of these last 10 years. After watching this happen, when I saw him for the first time Thursday night at the funeral home, I couldn’t help but just smile. He looks so at peace. How can we all not think of Shane without it bringing a smile to our face. Whether you picture him carrying his backpack with every book in it (making it weigh more than him), telling his stories that always started at Before Christ time, without missing the smallest detail....or seeing the simplest daily things in life like, Scooby doo, pepperoni pizza, Pitch Black Mountain Dew, anything with the block M on it, of course duct tape and Red Green, the game show network, the cartoon network, don't forget Taco Bell, and so many, many, more things.
There are no words that can let you know how thankful we are that you were all a part of Shane’s life. I'd like to thank first all of his teachers and staff. Those from Bangor Central, who were so loving, caring, and supportive of Shane while he was there, and after he moved on. I always knew that Kayla and Adam were being looked after all the times that we were gone. Right on through to his high school teachers who took him in his first day of 9th grade, (with me being so very nervous for him and his new high school experience), and made him a part of such a wonderful school. We’d also like to thank our family, friends, and co-workers. Your years of support, whether it was helping to pick up or drop off kids, help cover our jobs at work when we couldn’t be there, or just your prayers and well wishes, have made these last 10 years so much easier for us. Our final thank you, goes to everyone at the U of M, Motts’ Children’s Hospital. From that first day we walked in on August 19, 1994, you have been our 2nd family. Your knowledge, your compassion, your sense of humor, and so much more, all gave Shane the strength he needed to go down there and receive the 100’s, maybe even 1000’s, of treatments and tests over the last 10 years. He never complained of having to go down, and the majority of the time he looked forward to it. You are all such special people and I feel that you have such a gift. You made Shane’s fight against cancer so easy for him to do, which then made it easier for us. We love you so much.
Finally, I want to let all of you know, and I’m sure you will agree, that whenever you hear the Bobcat fight song (did you know that the inside of Shane's class ring is engraved with JGHS forever), or the Hail to the Victors (on Wed. we counted his U of M T-shirts, he had over 45 of them), Shane will be right there beside you singing, or directing his heart out.
We love you Shane, and you will definitely always be with us!!
The rest of the service was perfect. I had asked the organist to not play the songs slow, but peppy and full of life. That was so Shane. The readings were perfect and Sister Ginny's homily was perfect also. For only meeting Shane twice, once after church one Sunday, and then at our house a week ago (Shane kept falling asleep while she was there), she really captured quite a bit of who he was. The meal was right after and then we went to the cemetery. The line of cars went on forever. I am very happy with the spots that we picked. He'll get a lot of sunshine there. We've decided to put a bench out with him instead of a traditional marker. We have to wait until after winter though before it can go in.
I'll end this for now by giving you 2 different links to 2 articles that were in the paper. The first one is an article about Shane that was in our local paper on Saturday. The second one is an article about Shane from the paper at CMU on Friday.
For now we are okay. Seeing him fight and begin to suffer like he was, this was the very best thing that could have happened, especially before it could have gotten much worse. I know the silence of his voice (boy could he talk), the voice of his monkey telling us what to do, the bell ringing when he wanted something, and just not seeing him sitting on his perch, will catch up to us soon. Oh, let's not forget the up-coming holidays, his favorite. (BLAH!!)
As always, and now more than ever ....thank you with all of our hearts for your prayers and well wishes these last 10 years. Where would we have been without you!!
Links to articles:
Bay City Times
CMU paper
With lots of love to everyone,
Cathy
(Forever Shane's mom)
Gephart Funeral Home
201 W. Midland St
Bay City, MI 48706
(989) 686-2291
Viewing:
Thursday ~ 5:00 - 9:00 p.m.
Friday ~ 1:00 - 9:00 p.m.
Funeral: Saturday, December 4th
At St. Maria Goretti Church
2872 N. Euclid
Bay City, MI 4870
9:00 a.m. - viewing
Funeral mass - 10:00
** Please consider memorials to: **
Child and Family Life - C.S. Motts Children's Hospital.(Source of fun for kids getting cancer treatment)
Alex’s Lemonade Stand Fund (Helping to Fight Childhood Cancer)
Bangor Band Parents (for the John Glenn Band)
CaringBridge (non profit org. responsible for Shane's site being available)
Thank you for all of your messages, phone calls, food, and for thinking of us!!
Tuesday, November 30, 2004
Words that I never wanted to have to say, but deep down I’ve known for a long time that I would have to someday…...This afternoon at 4:26, Shane took his last breath. Just like a lot of things in Shane’s life, there is a story as to how I know the exact time. I was giving Shane his medicine and his breathing was a little hard. His nurse, (who was with us for the 1st time and had spent the day with us because Shane was having a rough morning (what a gift she was)), was starting to explain what might be happening when he took another deep breath but this time he seemed to hold it. At the same time the nurse and I realized what had just happened, then the phone rang. I heard Randy answer the phone in the other room and tell them that I would call them back as soon as I could. That phone call came in at 4:26 (Shane’s birthday), and it was Nurse Kim from Ann Arbor calling to see how Shane was doing. She said she had been thinking of him all day and wanted to call to check on him. How special of a story is that? (I think Shane and Kim have had some type of connection for awhile now).
I will update more when Shane’s funeral arrangements are finalized. Please know, and believe, that I am okay. For me the worst is over. It was so hard watching him slip further and further away these last few weeks and not be able to do anything to stop it. I believe with all of my heart that he is in heaven and is finally free. I know in time the silence (for those of you who knew Shane personally, and knew his love for talking) will catch up to me. For now though, I am so happy for him that his fight is finally over.
Sunday, November 28, 2004
Once again I find myself wishing I could write something different, but I can't. Last week was a little better for Shane in some areas (his throat is a little better and he was more awake), but it was also a little worse (non stop nose bleeds at times, more weakness all around, and starting to sleep more by the end of the week). He hasn't eaten in almost 2 weeks now, and as of yesterday he only woke up to get a drink and then go back to sleep. Tomorrow he was to start his next course of chemo. I think we've reached that point where the chemo just wouldn't do anything for him and would be more harm than good. I was hoping that we would never have to make that decision, but here it is right in front of us. I was blessed to be able to talk with Angel Chelsea's (our very first friend that we lost 8 yrs ago) mom, and Angel Paige's mom (our last little friend that we lost this summer) this week. They are 2 very strong people that I admire so much. It was so nice to talk to them and hear that they are doing okay (as well as they can). Life really does just go on no matter what else happens in your own life. You just have to choose how you are going to live it. ~ ~ Please keep praying for peace for our brave guy. Thank you all for checking in.
Monday, November 22, 2004
The past week has brought on many changes with Shane. The chemo that he received the week before did take care of most of his areas of pain. I believe it also helped us get him to his MI game that Saturday. It also left him though mostly drained and with no blood counts at all. Because of his low white count he then started having problems with his throat, which has left him having a hard time talking. I guess I should say more of a hard time for us to understand him at times. He’s not strong enough to walk anymore so the wheel chair that we got for him is a true blessing and makes things much easier. He was happy last week when we brought his bed down and set it up in the living room. He’s been sleeping pretty good in it compared to on the couch. This week though found him also crossing that line of not having more good days than bad. We're now hoping to just have more good awake hours than bad. His next chemo should start a week from today, but with the way things are going we may not be going back for it. Right now I don't think he would even realize if Monday came and went and we didn't go down. I kind of hope that it stays that way because it would just crush him to know that he may not be going down there anymore. He just loves seeing them so much.
For now he is sleeping peacefully quite a bit. We can tell he is having happy dreams because he talks out loud a lot while he is sleeping, so we get to hear some of what he's thinking. When he is awake he is still able to talk with us some, and still get us laughing. A debate over whose New York T-shirt he was wearing yesterday happened between him and Kayla. It was pretty funny. Then he started in on Adam and what a sorry team MSU has for their game on Saturday (I think he blocked out the fact about U of M losing). Our hospice nurse that we have come to the house is really nice and Shane likes her a lot. On days that she doesn't come she calls to see how he is doing and is always reminding me to call her for anything. We're very lucky to have found her.
This week, being the week of Thanksgiving, has me remembering last year at this time. We had recently tried the treatment in New York and had just found out that it didn't work. Shane's grade school had gotten all the kids there involved and even though they had never met Shane, or knew who he was, they had just done a months worth of fundraising for us. And we were able to spend another Thanksgiving together. Even though this year for Thanksgiving things have drastically changed, I am still so truly 'thankful' to have had another year with Shane. He has given us so many memories this last year and was able to accomplish things that no one would have expected 10 years ago. For now we still just go 'one day at a time'. Kayla and Adam are going to school because I really think they need to keep doing everything that they usually do for now. I think it's also good for them to have a 'get away from it all and be with their friends time.' It's after school when Shane is usually awake anyhow.
Thank you everyone for being a part of our lives and for thinking of Shane. Your support, prayers and well wishes, have always given us strength. Will you please continue with your prayers now more than ever. With this being the week before he was to get chemo, I'm sure his pain will start to increase. All we want now is for him to have peace. In spite of it all, we still have things to be "Thankful" for. Happy Thanksgiving to everyone!!
Shane, for the most part, is going with the flow with the new differences in his life right now. He still doesn’t say too much about any of it. He’s sleeping more than he was about a month ago, but when he’s awake he’s okay. His friend Stacy came over to see him last weekend when she was back from school. Those 2 are so funny together. I can’t decide if they act more like a brother/sister combination or an old married couple. She’s a very good friend to him. In September when he was inpatient and had his set back, Stacy wanted to come and see him from Ferris (Big Rapids). I told her she should wait a couple of days and that we would be home so it would be closer for her. Otherwise it was going to be a 3 hour trip for her one way. She said no. I was glad to hear then that her dad was going to go out and get her and bring her down. Poor guy though, that made it a 5 hour drive for him one way. When they’re together they sit and talk and laugh about school, T.V., anything.
This week we’re just going to take it day by day. I know that on Tues. and Fri. Shane will be getting his platelet transfusions. Hopefully (keep those fingers crossed really tight) this week will be uneventful. Of course on Saturday we’ll be watching the U of M against Ohio State game. THANK YOU SPARTANS for beating Wisconsin yesterday. Because of MSU’s win, when the Wolverines beat the Buckeyes on Saturday (sorry Shayne and Angela), Michigan will be the Big Ten Champions, YAY!!!!!!
Thank you everyone for checking in on Shane, and for keeping him in your prayers. Things are slowly changing here and I believe it’s everyone’s prayers that keep him, and the rest of us going. Thanks again!!
Sunday, October 31, 2004
Hey, how about those Wolverines!!
Was that a good game or what?? The house was divided, and I'm not talking about the BIG HOUSE (U of M's Stadium). Shane and I were watching it in the living room. Randy and Adam were watching it in the family room. At first I was a little upset that we just couldn't all watch it in one room. By the 4th quarter though, with 54 seconds left and the score being tied, I was glad that we were separated. That was such a good game, and that's all I'll say about that. Oh, I forgot, Adam lost a bet with one of his teachers and is suppose to wear something U of M-ish to school this week. How great is that!! The icing on the cake was when Shane found out that CMU came from behind also and beat Western. It was a great Saturday for football here (for some of us anyhow).
Last week for Shane went pretty slow. The effects of his chemo lasted a few long days. There were a couple of days last week when he didn't wake up until 3. The one day he slept until 5 when I finally went and woke him up. By Wednesday he was starting to feel a little better. I got him to go with me to the high school to get takeouts from the spaghetti supper the Student Senate was putting on. It was a nice little outing for him and he got to see some kids that he knew and a few teachers. Friday he was feeling even more better (poor English I know, 2 positive words together is a no, no. Shane always reminds me.) so I took him, Kayla and Adam to visit their old grade school. They've wanted to see all of the changes that were made to it over the summer, plus they could see some of their old teachers before they left for the day. That school looks sooooo nice and the improvements were so badly needed. The kids all had the same 2nd grade teacher so we went to see her first and they got to visit with her for awhile. She is the one that gave Shane his famous monkey 'Ko Ko' when he was first diagnosed. He took that Monkey everywhere. We still take him to Ann Arbor when Shane's inpatient because we didn't one time and got a verbal thrashing for it. The monkey has kind of turned into a family mascot now. He's been to more states in the U.S. than most people. Friday night Shane was able to get to the Glenn game for awhile. He started to get tired by halftime, so after the band played he went home. That was the most that he's done in one day in awhile.
Hey, how about those Wolverines!! (ha, ha)
This week I'm hoping goes okay (I don't want to set my sights too high). I'm hoping that Shane's not as tired as he was last week, that he starts eating a little more, and that he's able to get out of the house a little more. His transfusions in Midland are going good. They're very nice there (like they wouldn't be) and I don't think we consider ourselves 'the new people' there anymore. We missed going to Ann Arbor last week though. Halloween there is always fun. This is the first year we've missed in a long, long time. I hope they took pictures to show us next week. Tuesday is Election Day (won't everyone be happy when Wednesday is finally here) and Shane got his absentee ballot filled out Friday just in case he's not feeling good on Tuesday. If anyone knew Shane when he was in 1st grade, and remembers how upset he was with the outcome of that election, you can probably take a guess at who he's voting for at this election. If you don't know that story, check back here in a few days and I'm hoping to have a new picture on the front page.
Hey, how about those Wolverines!! (last time, promise)
That's all for now about Shane. I want to take this time to tell you some good news about Kayla and Adam. Kayla found out last week that she made the National Honor Society (one year late, but she didn't turn in her paperwork last year), and Adam's JV football team ended the season being the Conference Champs. Adam and 12 other JV players also got called up to the varsitiy team for their conference game.YAAAAYYY to both of them!!!!! Thank you so much for all of your well wishes, prayers, and messages. Please keep them coming because this is the week (week before chemo) that if Shane is going to have any problems, they'll be surfacing soon. Thank you again for thinking of Shane!!
Hey, how about...... never mind!!
Adam and I went to CMU last week and brought home all of Shane's things. It took all of 20 minutes to get it all. He never really got 'settled in' to the point where he had his stuff out and was really a part of his dorm. To me that is so sad because it is something that he really looked forward to. It seems like every week he was there I was picking him up after classes and not getting him back until around 10. It's kind of hard to get out and meet people when you're never there. This week if he's feeling better he wants to visit a couple of his classes and see his professors. Here's hoping!!
That's all for now really. Hopefully in a day or two the effects of the chemo will be behind him and he'll have some good days that he can get out and do something. Thank you for checking in on Shane and for all of your prayers and well wishes!!
Oh, for those of you who do not know who Red Green is (Diane : )), he's on everyday at 12:30 p.m. on channel 98 (CBC channel), or Friday night at 9:00, channel 98 again, Saturday night at 9:00 p.m., channel 9 (Delta), or 10:00 p.m. on channel 12 (CMU). Everyone should watch him at least one time (ha, ha).
Thanks for checking in and for thinking of Shane!!
Medical wise, last week Shane did pretty good. No pain, just kind of tiring easy it seems. His transfusion in Midland went really well. He ended up getting platelets and blood so we were there longer than we had thought we would be. He had a room to himself with a T.V. for himself (you share in Ann Arbor), plus they brought him a menu to order off of and delivered the tray right to him. Sometimes little things make us happy. This week, he’ll go back to Midland tomorrow for another transfusion. On Thursday we go to Ann Arbor where he has a few appointments in Radiology. The last one being the radiation to his leg. It’s been fine since he got his chemo, but we’re sure that it will flare up again and this is just a preventative to that. Next week he’ll start his chemo so hopefully this week , especially the end of it, will go without any problems. In a few days I’ll write an update about school and what he’s going to do there. For now though I know that he’s moving out of the dorm, probably in the next day or two. Classes………. I’m hoping that he decides and feels like going this week. I really don’t want to see him just sitting on his perch (the north cushion on the couch) and watching T.V. all day. Here’s hoping!!
Thank you all for checking in and for all of your prayers (we did make it to Toronto), and your well wishes!!
The BIG news is that it looks like it might be a go for our little trip to Toronto next weekend. RED GREEN, here we come!!
Thanks for checking in!!
Tuesday, September 28, 2004
Things are still better. He's back to eating his Taco Bell. He's going to get a dose of chemo tonight and then one tomorrow, then we'll go home and do the rest out-
patient. YAY!!!
Monday, September 27, 2004
Where do I possibly begin with this entry?? ….. Not to long after Friday’s entry Shane ran a small fever. Since it was a low grade and we were already going to Ann Arbor in the morning for platelets, we decided at first to wait it out. Right before he went to bed he started another one, this one getting higher. He told me he really didn’t want to go down then so I bargained and said we would leave in a couple of hours after his Tylenol kicked in and I had gotten things together to be admitted and taken a little nap before the drive. We checked into the ER at 4:02 a.m. exactly. You’ll know why I know this in a minute. Our last trip through the ER was a breeze, almost pleasant. This trip was definitely the trip from h#ll!! We were put in a little room with a bed for him, the door was closed, and that was it for most of the time we were there. After the 3rd person came in asking the same questions, I started to lose it. Needless to say after 1 shift change, 3 phone calls from me up to 7 West, 1 trip from me up to 7 West, me telling off 3 nurses and 2 doctors down in ER (they wouldn’t release him to go up), him spiking another fever at 103.5 this time, and 6 HOURS LATER, we finally got upstairs at around 10:30. The nurses and doctors up there couldn’t believe the mess we went through. Once we were in our room things were calm for a little while. He had started different antibiotics downstairs and they just continued them. His next fever came, about the same temp as the last one, but this time his blood pressure dropped a lot. They started rushing fluids through him to bring it back up and that helped. As his fever went away, his blood pressure came back to normal. That happened one more time and they did the same thing and it worked out the same way, so I didn’t think too much of it. One of the Interns, or Residents, or a Doctor (?? I’m not sure which title she has), came in and asked to see me in the hall. She then told me that she had spoken with Dr. Yanik and that he said his infection was a serious one because of the drastic drop in his blood pressure (I think at one time I saw 70/30). They wanted to start him on some medication to bring it back up, but they could only start it there and then he would have to go to the ICU to be monitored. Then came the question again that we’ve heard since March and his progression then, does he have a ‘Do Not Resuscitate’ form signed. Well, NO! Back then he was under 18 so it was pretty much our decision if something seriously ever came up. Once he turned 18 they wanted a document signed, but when do you bring that subject up. This whole topic has never been one that we’ve talked about with him. He was told in March about his progression and how serious it was, but he has never talked about it after that. I’ve asked him if he has any questions, Dr. Yanik has asked him, he always just says no. We’re not sure if it’s his way of dealing with it, or if he also takes the ‘one day at a time’ attitude, and as long as he’s feeling okay, he’s okay. She was very nice explaining everything to me and it was suggested that maybe when Randy came that he should bring Kayla and Adam also. Wow, what a difference a day sometimes makes. After sitting and talking with Dr. Yanik for awhile and listening to him explain that because his disease is so extreme right now (his CAT showed more progression in the same areas, and then more new areas if that’s possible), that he didn’t think he had enough fight left in him to get him through this one. That it was some life threatening infection and they didn’t think that the antibiotics alone would be able to take care of. He strongly suggested that Kayla and Adam come. We decided then that Dr. Yanik would talk with Shane about everything, and see if he would sign the forms. His blood pressure was running low then so he was sleeping quite a bit. There were 2 newer female doctors in there with us as witnesses I think, and by the end of the talk with Shane they were both getting the Kleenex. At first Shane didn’t open his eyes and Dr. Yanik kept telling him to squeeze his hand if he heard him and understood him. There was always a pause, but then came the squeeze. As the conversation went on he started to open his eyes more and more. He took the news as you would expect him to. In the end instead of him signing the DNR paper, he signed a form giving Randy and I the Power of Attorney for him. We let Kayla and Adam know what they were saying about everything and let them decide if they wanted to come down or not. They were reminded that they had been through this before in March and that it was a false alarm back then, but I didn’t want them to feel guilty about anything if things went differently this time and they hadn’t come to see him. Kayla was in Detroit with her friend Sarah and my sister-in-law (who stepped in once again for me and took her dress shopping for homecoming). They both decided to come. It ended up that he didn’t go to ICU. That they would give him as much of the medicine that they could on the floor (I guess there’s a cap to that) and hope that that would be enough. He was watching the Michigan game on T.V. and I told him that Randy and Adam were on their way. That Kayla, Sarah, and Laura would be coming. And then pretty much everyone else had decided that they wanted to come down too (grandparents, aunts, uncles). I asked him if that was okay and he said yes. Randy, Kayla, Adam and Sarah stayed overnight, everyone else was gone around 10. He talked, he smiled, and he laughed while they were all here. To think about it now, the whole turning point in the opposite direction (the good direction) happened after Dr. Yanik’s talk with him explaining everything to him. He was more awake at the end of that than he had been in hours. Dr. Yanik had said that the first 12 hours were going to be the crucial ones and he was right about that. What I am so truly happy about though is that he was wrong about him not making it through this infection. He has been fever free since then. The medicine worked and brought his blood pressure back up and he has since been taken off of it. One of his blood cultures started growing something so they can identify his infection now, and he just looks so much better than he did on Saturday.
We’re still inpatient, but may be able to leave tomorrow (Tues.) after he gets his first dose of chemo. We’re still going to use it as a pain reliever and hopefully it will continue to slow down the progression. My prayer request this time is that Shane’s pain be able to be kept managed, and that he can find the strength to handle everything, emotionally and physically, that has for some reason been given to him.
Thank you so much again, for checking in on Shane, and for your continued prayers and well wishes.
Well......this week was so-so. Shane made it to school except on Wednesday when he had his bone marrow done, and then he missed today because he is in real need of his chemo. I left school early and went and got him after he called this morning. You can tell by the sound of his voice when he's not feeling good. His chemo starts on Monday so I'm hoping that it gives him some relief. His CAT scan day was pretty easy, just a little long. Once he started drinking his pre-med stuff we had a 2 hour wait for the actual scan. We went upstairs and visited at Motts. He loves to see them. Wednesday's bone marrow was okay, at least he didn't get pnemonia this time. Since he did last time though, and since he had a Sausage McMuffin that morning right up to the exact minute of the cutoff for no food (I guess that's a no, no), they put an air tube in his throat during the procedure as a precaution. His throat is still irritated a little.
Tonight since it's Friday night football night and he's not feeling too good, we're waiting at home for a phone call telling us when the 2nd quarter of the Glenn game starts. It will be the bands first performance night since the real first home game was rained out and they couldn't play. Shane wants to really go and watch them at halftime and I'm hoping that he feels good enough to get there for that little bit. Tomorrow he has tickets to the U of M game that he got as a graduation gift. It's not looking to good for that right now, but I told him we can get tickets to another game and schedule it on a weekend when we know he should be feeling good. We're going down in the morning for platelets, and if by chance he's feeling up to it after that, we'll go to the game.
This week we look forward (very much) to chemo. I'm not sure if he'll get back to school on Monday before he gets his first dose or not. His professors are being very understanding about the missed time. We have been so lucky when it comes to missing school and everyone helping Shane with that. He was very happy that he did pretty well on his first college test this week. What a guy!! Just think what he could do if he was ever given the chance to actually go to school and not miss.
That's all for now. This week, I'm sure, is going to be a trying week for a few different reasons. That's a whole other entry though. My prayer requests this time are for Shane. That his chemo this week gives him relief for his pain. That in 2 weeks he is feeling good because we have tickets to watch a RED GREEN taping in Toronto. That will be such a special weekend for him.
Thank you for checking in on Shane, and for all of your prayers. He really needs them.
So this week is slowly filling up. On Friday we finally have an appointment for Shane to see the doctor that will oversee his blood transfusions in Midland. They won’t allow him to do anything there until after this appointment. It’s not going to be Ann Arbor (and that will take some getting use to), but I’m hoping to get at least one thing done there a week instead of all the driving back and forth south. Other than those 3 days (ha, ha), hopefully things will be sort of calm around here. The week of the 27th he’ll start his next course of chemo. All of the appointments are already made so he can go to school first. Gotta love those people in Ann Arbor for being so flexible with us (other than the holidays, sorry)
Thank you as always for checking in on Shane, and for all of your prayers and well wishes.
I guess all we can ask for is that next week be much better than this week (His new chemo that was added is so far, so good). I think my next mission in life is to push for the Cancer Center to be opened on weekends (Saturday and Sunday), and the holidays. Cancer just doesn’t take a day off. How can you go into a profession like that and not be expected to work sometimes on those days? Do policemen or firemen get those days off?? (Just venting, sorry)
That’s all for now. Thank you for checking in on Shane and for your prayers and well wishes.
So his first week went pretty well. The nice surprise through it all is that he had no pain. He even cancelled his bus rides to his Tues. and Thurs. classes because he thinks he’ll be able to walk to them. I really think that sometimes the more he gets out and moves around, the better he does. I remember all the marching he did for band the last couple of years. When he puts his mind to something, he can usually find a way to do it. Yesterday we ended up going back down to Ann Arbor for platelets and one unit of blood. We’re going to go back on Saturday for his 2nd unit because I really didn’t want to do the drive again today, then fight the vacationers heading north on our way home. We laughed last night when I got him back at school because we had started at CMU, had gone to U of M, and then on the way back we drove by MSU’s stadium (Adam had a football game in Okemos so we stopped on the way back for the last couple of minutes). Shane of course said that he had gotten itchy when we were in Spartan territory.
This week he starts his chemo. I do believe we’re going to add the Temodar this time. Hopefully he won’t get too many extra side effects from it. Also hopefully by the end of the week we’ll have everything arranged so that he can get some of his transfusions in Midland. So…… our wishes, hopes and prayers are that his 2nd week of school goes as well as his first week (with the chemo thrown in this time though).
Thank you for checking in on Shane, and for all of your well wishes and prayers!!
Already today I have to go and get him and take him to Ann Arbor for platelets. I'm in the middle of getting things together so he can have it done in Midland sometimes, but it's not completely arranged yet. They really thought he should have gone yesterday (they were at 3,000), but we were almost to Mt. Pleasant with all of his things when I found out, and he really wanted to stay overnight. I told him when I left to not do anything, just sit. Don't take the stairs, don't go out of the dorm, don't do anything that may cause a bump or cut. He laughed.
Classes start on Monday so I'm sure I'll have more to write after that. He's coming home after getting platelets, then he'll go back on Sunday. Kayla and Randy's birthday is tomorrow so we can celebrate that while he's here. Please keep wishing and praying that he can do this, it's really important to him. Oh, also that Mother Nature gives us a break with the heat. It's a little to late for it now (his dorm was pretty uncomfortable, and anyone that knows me, or lives with me, knows how I get when it's too hot out also)
Thanks for checking in.
On Wednesday last week Shane got his classes at CMU, 12 credits altogether. The girl that we were with this time was just as nice as the first one we met the week before. She made up a schedule for him that is really nice. He has at least an hour break (if not more) in between his classes. His latest class ends at 3:00 on Tues. & Thurs., and his earliest class is a Music class (Jazz-An American Art) that starts at 8 on those same days. He also has a speech class, American Experience (HST) class, and a computer class. The early one at 8 may be the problem one, but it’s also his music class so that might help. We’ve noticed in the past that if he has something to look forward to that he enjoys, he can sometimes do more than we expect him to. Move in day is the 26th, and his first day of classes is the 30th. Keep your fingers crossed!!
This week, today really, he started his chemo. He’ll go through Saturday this time so he can get all 5 days together. He was just starting to have some pain yesterday so today came just in time. We’re planning on adding the Temazolomide the next time he gets his Irinotecan. I think he could have had it this time, but I really want him to have a good first couple of weeks when school starts. We know what to expect with the Irinotecan, but don’t know what to expect when he gets the 2 chemo’s instead of 1.
That’s all for now. School for Kayla and Adam starts on Wednesday next week. My summer vacation was cut short when a letter arrived on Friday saying that I had to start back today (BLAHHH!!!!). Kayla got her senior pictures taken and the proofs came back already. Now we have to weed out the ones that we really like. Adam is still practicing for football with his first game next Thursday. Things are starting to pick up pace around here quickly. Shane, well he’s just taking it easy waiting for his move in day.
Thank you everyone for all of your prayers these last 10 years, and for thinking of Shane!!
On Saturday was one of our family reunions. It was my dad’s side and every year the morning of the reunion my aunt, uncles, some of my cousins and their kids, meet to golf. Shane golfs with my brother, Jim, and then Randy and Adam make up the other half of the team. Shane and Jim take pride in the fact that they don’t golf good, and last year Shane made up T-shirts for them saying “We suck and we’re proud of it.” Well far be it from Shane to miss anything traditional, so Saturday morning he got up at 6:45 a.m. (isn’t that waaayyy before noon??) and went golfing. They didn’t get last place like they usually do and I think they were a little upset about it. Something about ‘girls’, ‘cheating’, ‘counting’ were some of the things coming from Shane and Jim's mouths about the team that got last place. He had fun though, but his arms are a little achy from it. On Sunday I took his blood in again to see if we needed to go down yesterday (still hoping though that his platelets decided to come up on their own :D). The Resident on duty called around 4 and said that they were at 4,000. She wasn’t comfortable waiting until Monday so she wanted him brought down then. All I could think about was Sunday traffic heading south, this should be fun. It really wasn’t too bad (Don’t they teach slower driving people to drive in the far right hand lanes anymore??), a little road rage, but not too much. We got up to the inpatient floor around 7. One of his nighttime nurses was working so that was an extra bonus. He got his platelets, and we were home by 11:30, not bad. I got a phone call yesterday from one of the Oncology nurses asking me why I hadn’t brought him down yet for a transfusion. They know I don’t wait for phone calls anymore. That we usually just leave to go down in the morning after we get his counts and call while we’re on the way. I guess someone forgot to let them know that we were already there. :)
This week, other than going to CMU tomorrow, and I’m sure platelets on Thursday or Friday, there is not much planned here. Adam started football practice yesterday and he and Kayla get registered for school this week. I’m sure something else will come up, otherwise the week would be too easy. In my last entry I had asked for prayers for Simon who was not doing well. Simon became and Angel on Friday. I thought a lot about him on Sunday while we were in Ann Arbor. The last time Shane was inpatient in the spring with a fever, Simon and his mom were there visiting from Utah. Simon was sitting in the park (a play area on 7 West) watching a Power Ranger movie. I sat with him for a few minutes and told him how I use to love watching the Power Rangers with my kids when they were little. Another very strong and brave young person gone to soon.
Thank you for checking in on Shane, and for all of your prayers and well wishes!!
Sunday, August 1, 2004
I kind of lied about the 'no news is good news' thing. Monday night Shane's back started to hurt some, enough that he wanted to sleep downstairs. By Tuesday it was really bothering him so he stayed on his heating pad and took his meds continuously during the day. I ran his blood in thinking he would probably need some on Wednesday and his platelets came back at........... 1000, YIKES! He wasn't having any symptoms, nose bleeds or spots (long medical word) anywhere on his body, so that number was a big surprise. Wednesday morning when he woke up though his gums were bleeding pretty good. We valet parked in Ann Arbor again so I could get him in a wheel chair and up to clinic. While we were talking about the transfusion I asked if he could maybe start his chemo early. If we didn't his back would only keep getting worse. Dr. Yanik came in and saw him and said that starting chemo was probably a good thing to do. By Wednesday night at home he was already feeling better and had ditched his heating pad. Thursday, he walked into clinic on his own being his chatty self. They had saved a bed for him thinking he would need it again after seeing him on Wednesday and laughed when they saw him saying 'we should have known'. We've decided to try chemo 3 days this week, and then 3 days next week. We're hoping that spreading it out a little will not give him that up, he's feeling good, to down after a week or so, he's not feeling good. Maybe we can find some kind of middle line here. After chemo Thursday we went to the going away party for Shane's band teacher, Mrs. Stoddard. She has decided to retire just recently. She was with our schools for 6 years and brought the band program around to something that the kids were so proud of. They accomplished so much under her direction. We are truly going to miss her.
This week we are going to have to really decide on what Shane is going to do for college. He wants to go to CMU so bad. He's been accepted, and tells everyone that's where he is going, but what will he do with all of the time he'll have to miss. How can I let him go and live there and be able to sleep at night and not worry. It isn't high school anymore. This is such a tough decision for all of us, especially him. I think if we can't figure out a way for him to do this, he will consider it a big defeat and I really don't want him to feel that way after everything he's been through. I hope things come together okay.
I have to use this space to give someone a VERY special Thank You!! When we got back from the hospital Wednesday night after a long day, there was a Fed Ex package here waiting for Shane. Inside that package was a Red Green bobble head, signed by Red on the box. There was an 8 X 10 photo of Red, also signed. Then there was a letter written to Shane on possum letterhead from Red, Harold and the whole gang. It was the best thing and it came at the best time. Thank you so much to the special person who did this for Shane!!
This week we have 3 days of chemo left to get. I'm sure some blood in there sometime also. He should be feeling pretty good (keep you fingers crossed). There are so many kids that have lost their battles this summer. Now there are few more, who after fighting so long and hard, are losing their battle against this diesease. Would you please say a prayer for Simon (who we got to know through U of M and now lives in Utah), Alex (the little girl who by herself has inspired people to raise over $700,000 for children's cancer research this year with lemonade stands around the U.S.), and Shelby. Their families could really use some strength right now.
Thank you for checking in on Shane, and for thinking of him.
Thanks for checking in on Shane. If anything comes up during the week I'll update, otherwise think "No news, is good news".
This week I seem to have gotten the wind knocked out of me. Everything with Shane, and then Michaela died Wednesday night. What another slap of reality. She was definitely a fighter and tried everything that she could to beat this. One more beautiful angel in heaven.
Today, should Shane wake up feeling as good as he did when he went to bed, we are planning to go to St. Helen for a graduation party. It's for the son (Chris), of Shane's Godparents. Brian and Ellen stood in our wedding, they have 3 kids, we have 3 kids (pretty close in age). The plan waaaayyyy back was to get together and have the kids, and us, spend a lot of time together while they were growing up. Well, that didn't happen as much as we would have liked it to. They went from infants and toddlers to graduating. A lot of missing years in the middle.
This coming week we have no plans. I'm sure Shane will need a transfusion again sometime. We always laugh and say, "See you next week", when we leave there. It dawned on me yesterday that my first day back to work is 1 month from tomorrow, ahhhhh!!! Where is this summer going? This week we have to get Kayla ready for her senior pictures that are coming up. This should be fun :)
Will you please keep in your prayers Michaela's family. They really need a lot of strength right now. And for Simon. He's really going through more than any little guy should have to go through. I know your prayers for Shane have brought him through this week feeling better. Thank you so much for that, and thank you as always for checking in on Shane and for leaving your messages.
This week the big game plan is to finish his chemo and not plan anything else. It seems like the summer is already flying by. I still have things to put away from his graduation party. Hopefully I'll have it finished before the new school year starts. Shane is happy sitting on his perch (the portion of the couch where you can ALWAYS find him, (we always give him a hard time about it too)), reading some music books that he has and watching T.V. for now. I'll let him get away with that for a little while longer, then we'll have to think of some other way for him to pass his time when he's feeling good.
I hope you all have a wonderful week. If you would, Michaela and Simon could really use some prayers right now. They are both having such a rough time. Thank you so much for checking in on Shane, also for your thoughts and prayers. They truly mean so much.
Saturday, July 3, 2004
How quickly things can change. Thursday night when Shane went to bed his right hip to knee was starting to hurt. It's an old pain, but he hasn't had it for quite awhile. By yesterday morning it was pretty unbearable. After taking quite a long time to get him downstairs we got him going on his pain meds. His patch was doubled, he was given liquid morphine under his tongue, and then his regular oral pain medicine. After about a half hour he was able to get comfortable as long as he didn't move around. After about an hour he was out like a light. He dosed on and off for the rest of the day and I just kept giving him his pain meds around the clock. He had a friend come over in the evening and he stayed awake most of the time talking, and talking, and talking. I think a lot was from his meds. He would nod off for a minute, then open his eyes and start telling a story about something, anything. His friend and I would just smile and go along with whatever he was saying. He will definitely sleep downstairs until he's feeling better. Today there isn't much change. He's pretty much sleeping the day away. As long as he's still hurting though, I'm happy with that, at least he's comfortable then. He can't start his chemo until Tuesday because the hospital (Cancer Center) is closed for the holiday. Imagine that!! Things like that I really don't understand. Even WalMart and other department stores are open on Monday. Maybe they think cancer takes the holidays off (sorry!).
Hopefully things won't get worse before then. I did call down yesterday and they said to keep doing what we were doing and to bring him down if we couldn't keep him comfortable. I'm hoping this is only temporary, and once he starts his chemo things will get better. Today I guess is just not a good day all around. Paige's funeral was this afternoon. I ended up not going because I didn't want to leave Shane for that long. Today is also the 8 year anniversary of what should have been such a happy day for us, but ended up being one of the saddest. 8 years ago Shane was released from his first transplant. He sailed through it without any problems and was out within 21 days (a very good record back then). It also was the day that we lost our very first close friend Chelsea. She was 4 at the time and her and Shane were one of the first, if not the first, to break the rule at Mott's about co-ed room mates. We begged and won, we got to share a room for a week with both of them getting chemo (they both had NB and were almost always being treated inpatient at the same time for the first year), they had a ball together. I hope tomorrow is a better day.
Wednesday, June 30, 2004
Shane's graduation party turned out great. We couldn't have asked for better weather. Sunny, mild, clouds when you needed them, it was perfect. I don't have a clue as to how many came, but it was a great turnout. It was so nice to see Shane's grade school teachers and staff altogether again. I invited them because they were such a main part of his life when this all started, and they've continued to be such a support to him through the years. They were asked not to bring Shane anything because they have already done so much, but you know how that goes. Shane and I were so glad to see Mary Jo, one of his nurses, come in with her family. They had been hiking at Isle Royal for the week and were on their way back home. We've shared so many stories together about our families over the years, it was nice to put a face with the name. I am positive when I say that Kayla and Adam are glad that it's all over (me too!). They've worked their butts off for the last couple of weeks. They both told Shane that they wanted 20 percent of the money that he got for all of their hard work (ha, ha). I'm going to seriously try and talk them into a some sort of payoff so we don't have to do this again. I'm not to good at organizing (that's such a nasty word) and throwing parties.
Shane survived the big day and did pretty well really. It started at 3 and he stayed outside on his feet talking with people until around 8 before he came inside. There were just a few family memebers left by then. There was no rest on Sunday because we had 5 different parties to go to. We ended up missing one because we just ran out of time. On Monday he finally got his wish and was able to sleep until noon. So far this week he is doing okay. I'm pretty sure we'll need to go down for platelets tomorrow. I've asked that he be able to start his chemo a week early, which would be next week. Since he is getting the low dose, I know of other families that do it every 3 weeks instead of 4. Hopefully this will cut off any symptoms that he might have happen during that 3rd week.
I'd like to ask that you keep Paige's (www.paigerutter.com) family in your prayers. Her fight against her disease ended this morning and she is now a beautiful angel. Some of you wonder how we can be doing this for so long. Paige was diagnosed not even a year ago. She wasn't able to get all the chances that Shane has been given. She wasn't able to have her '1st day at school', her first big dance, none of those things that so many of us take for granted. One of her favorite songs was "You Are My Sunshine". I planted a lot of yellow in my gardens this year thinking of her and that song. She put up such a brave fight and was such a cute little girl. I know even after everything that Shane has gone through, and continues to go through, we are truly very lucky.
Thank you for checking in on Shane, for your thoughts, and your prayers.
I have a few prayer requests, for Paige who was able to celebrate her 3rd birthday yesterday, but is not having many good days right now. For Alex, who had her big day on Saturday with over 1000 lemonade stands across the U.S. all benefiting research into children’s cancer. She was on the Today Show and Oprah last week to promote them. On Oprah she looked so tired and exhausted, but when Oprah asked her if she was having a good day or a bad day, she said a good one. Also for Michaela (Kayla), she had the MIBG treatment in the spring and it helped her a lot at the time, but her cancer is starting to spread once again.
I’m sure Shane will need blood or platelets sometime this week. If that’s all that happens around here, this will be a good week. Thank you so much for checking in on Shane and for thinking of him.
Today started out special also with the graduates from church wearing their caps and gowns for mass and sitting in the front. There were a few missing so it left only some of the boys there. It was fun to see them together again since they grew up going to religion classes together until about 8th grade. After church we had 3 graduation parties to go to. Other than a couple of bad storms during 2 of them, they were really nice to go to and see the different kids and their parents. Another nice day!
Tomorrow we start going back to Ann Arbor for Shane's chemo. I'm really glad that we got his first dose on Friday. I think it helped him get through the weekend without any problems. Well that's all for now. I'll let you know as soon as I get some new pictures on.
Thanks for checking in on Shane.
Yesterday we went to Ann Arbor for blood, then today we went down for more blood and his first dose of chemo. I really think that he should be feeling good for tomorrow. I think now that tomorrow won't be as much of a sad day for me as it will be a happy day. It's hard to believe that this all started the week before he was to begin 3rd grade. He has come so far and he has so much to be proud of.
Thank you all for checking in on Shane, for your thoughts, and for your prayers.
"To the Graduates of the Class of 2004:
Blue Pride crops up at the most unexpected moments. I love you all, and I am constantly amazed by your goodness and generosity. I have to say, however, that I have never been prouder of you than during the assembly when Mr. Benner sang his original son, "Strong Man - Shane's Song."
I watched a group of young people who wanted nothing more than to escape into the beautiful afternoon and forget about school. Yet when our own Mr. Tom Benner began his song I felt the hush, the rapt silence of young people who knew that they were hearing something both important and true. I was deeply moved when the entire student body and staff spontaneously rose to their feet in a standing ovation.
Your class has had the honor of counting Shane Rezmer as one of your classmates. Shane shows us the way, the way to live life with enthusiasm and courage. Mr. Benner recognized this truth, as well, and wrote:
The one who knew life was a treasure to hold.
With every breath you grew and each time
You laughed I knew, I was the better for having
You near.
I believe that Shane and Mr. Benner are right. Life is a treasure. But Shane is not the only lucky one or the only strong one. We are all "strong, strong" men and women whenever we realize our power, the power to see life as a beautiful challenge and adventure.
Mr. Benner says it best in his wonderful song:
Nothing, nobody should stand in our way.
So this is the time and, yes, this is the place
For us to decide where we're headed today.
So we look to a stronger man, bolder and braver
Who shows us that we are all masters for sure.
'Cause I know that we are the lucky ones,
The ones who know life is a treasure to hold.
Thank you, Shane Rezmer and Tom Benner, for reminding us who we truly are "masters for sure". May life be gentle and generous with all of you, the Class of 2004. Be happy and strong. Peace."
By: Patti Smith, Principal
There is much more to Mr. Benner's song, but this gives you an idea of how special it was. Thank you for checking in on Shane as always. My prayer request this time is for Paige and her family. Paige is no longer getting treated and having a hard time right now. For Alex, who is such a brave girl and inspiration to all of us that know of her (http://www.caringbridge.org/page/alexscott). And for Shane, that this week he is able to do all that is scheduled, leading up to his special day on Saturday.
Wednesday, June 2, 2004 9:35 AM CDT
We got back late Monday night/early Tuesday morning. Shane did real good through the weekend, no pain, no fevers..... He probably did more walking those few days he was there than he has the last few months. To say the trip was smooth and enjoyable would not be the whole truth. Let's see.... we were in Washington D.C., it was Memorial Day weekend, they had a major dedication planned, then throw in the current President, his father, another former President, a movie star and famous director traveling through town, oh let's not forget the 100's (really 1000's) of bikers that were there for their parade, and what do you get.......CHAOS!!!!! Everytime the poor band would head out to a scheduled event or tour, they were met with road blocks, or the whole place would be closed (Arlington Cemetary, Lincoln Memorial, the WHOLE Mall and surrounding area on Saturday). They were left spending the majority of their time stuck on their buses. The weather though was excellent for them on Friday, Saturday, and most of Sunday (when they did get to get off their buses). Not too hot, not too cold. Their performance Saturday morning outside at the Navy Memorial was great. They played their hearts out. Their 2nd performance that day ran 1 1/2 hours late. By the time they got on stage they ended up playing for their parents that were there and a few people that had come in. You could tell that they were disappointed by the small crowd after knowing that earlier the place had probably been filled. On Sunday they weren't able to play at either performance. The roads going to the Jefferson Memorial were closed for the biker rally so they couldn't play there. Then there was a major mix up at the Mount Vernon site and they ended up not playing there. They were able to be a part of a wreath laying at Mount Vernon and Shane was able to be a part of that. Their cruise, dinner and dance on the Potomac River Sunday night was a success (YES!!). After that, around 11:30 that night, they were finally able to actually get down to the World War II Memorial and see it and walk around (after a 2 mile walk Shane says (I think he exaggerates)). So.....they missed more than they could actually get out and see. But they were able to see some, and can say that they were there and were at least a small part of the whole big weekend and dedication. Hopefully that will be able to be enough for them. I am just truly grateful that Shane was able to go and felt as good as he did.
Right now I have a "Thank you" that I would like to get out. When Shane started to progress more in March and we weren't sure if he would feel well enough to go to D.C., his counselor, Mr. Wallace, contacted me and said that they wanted to help us to get him there (thinking that he wouldn't be able to do the long bus ride). At first money for flights out there was talked about, but after thinking about it and all the hassels that come with having to cancel them, I decided against it. Then money to rent a motor home was brought up. After thinking about where we were going and the shortage of parking spaces for even cars there, we decided against that also. In the end Mr. Wallace's son, Dave, works (co-ops) at the local radio station "Oldies 96". There they have a DJ named Johnny Burke who has the "Johnny Burke Children's Foundation". The foundation helps area families who have children with illnesses or disabilities. We received a very nice check from them that for one, was going to pay for a large van that I had found to rent with a fold down bed for Shane to sleep on while we were driving. When Shane and I went to pick it up in Ann Arbor though after his platelet transfusion on Wednesday, we found out that it was just a huge passenger van with rows of bench seats instead. We told them they could keep it because our Trail Blazer has seats that lean back if he wanted to. So the money was used to pay for all of our gas (for all of you Michiganders, our state was the most expensive), hotel, food and a few souvenirs for Shane to bring home. We are so very thankful to them and to everyone that helped with it.
That's all for now, thank you for checking in, for your prayers, and for thinking of Shane.
Wednesday, May 26, 2004 12:12 AM CDT
We are so close to maybe pulling this one off.... Tomorrow morning we will be leaving for Washington D.C.. So far Shane is still feeling okay. He gets tired kind of quickly, but he isn't having any pain. For that I am very grateful. We should be getting there (we're staying in Arlington) sometime tomorrow night so he has plenty of time to get some sleep before his schedule starts. Friday morning we'll take him to meet the band when they arrive in D.C. around 11:00. From there it will be just letting him do what he wants to, and what he can. If he needs to take a break once in awhile, then we'll take him back to our room and let him. If he wants to stay and do everything with the band (which is what I'm sure he has planned), then that's what he'll do. Here's hoping that just being tired is the worst that he'll have happen until we get back Monday night. Keep your fingers crossed!!
Thursday, May 20, 2004 8:45 AM CDT
Two more chemo days to go!! The week is going good after a questionable start. By Monday night, after Shane's first dose of chemo, he still wasn't feeling that much better. He wasn't having any pain, but he was still sleeping a lot and still slurring his words a little. Tuesday morning though he woke up a new, and much improved person. Tuesday night was the Senior Awards Night at the high school and at one time we weren't even sure if we were going to go. We had been notified that he was going to get an award and I had thought maybe for the 'B' honor roll and for Student Senate, but we thought that it might be too long of a night for him. I am sooooo glad that we decided to go and I wish now that I now would have had Kayla and Adam go too. He went up to get his cords for being a member of the Student Senate, Then he got called up for High Honors and got gold cords to wear at graduation for that. He then received an award from the Marine Corp for "Scholastic Excellence" for academic achievement and leadership. (YAY!!) Then the last one was very special. His principal was giving out the last award of the night which is called the "Principal's Leadership Award". She started to explain it, and how she came about to her decision on who she was awarding it to. After a few moments I realized that it was going to be Shane. When she was done talking and said his name, everyone stood up and gave him a standing ovation as he walked down to get it. A very emotional moment, but definitely a happy one. I can't imagine how we would have felt if we would not have gone. That was a close one!! The day before, Kayla and Adam had received their awards for being on the Honor Roll also. We're very lucky to have kids that work so hard. The evening ended with a trip to the ER for Adam. He had hurt his hand the night before during a ball game and by Tuesday night it was still swelled up pretty good. He wasn't having any pain or I would have taken him in the night before. The x-ray showed that it was broken in one spot (just a little one) so he has a removable cast that has to stay on for up to a month. Finally, something normal in our lives (smile)!!
After chemo this week we are anticipating our trip to Washington D.C. for the Memorial Day weekend and the dedication of the WWII Memorial. Hopefully Shane will be feeling good. The band is leaving Thursday night and driving through the night. They'll get there Friday morning and start their sight seeing and getting ready for their concerts. Shane is going to ride with us there (we're leaving Thursday morning) so he's rested for Friday and the beginning of, I'm sure what is going to be, 4 long days for him. We're going to hook him up with the band as soon as they get there and hopefully he'll be able to stay with them for most of their plans. They perform 4 different times at 4 different sites (I think), so with that and their sight seeing, they're going to be quite busy. Tonight they are having another concert at school where they are going to play all of the music that they will be performing in D.C.. They sent out over 100 invitations to area Verterans inviting them to come tonight, it should be a real nice evening.
As always, thank you so much for your well wishes and prayers for Shane. They mean so much to us. Also, will you please continue with your prayers for Paige and her family. They are going through so much right now and could use a lot of strength. One last request....Someone that has been with us from the very beginning of this time spent with cancer, has always been a source of strength and given a shoulder to cry on, could now use some strength herself. Would you please add her to your list of prayers.
Thank you for checking in.
Sunday, May 16, 2004
Sleep, Sleep, and MORE SLEEP. That's about all that's been happening with Shane lately. He is whipped right out (He even slept through The Red Green Show last night). I'm putting a lot of pressure on his chemo this week to turn things around. Tomorrow morning the band has to be at school at 6:50 to perform live for a local radio station (WSGW if you live around here). Of course he wants to be there. The one thing I've going for me to maybe get him there that early is that he has to get up to go down to Ann Arbor for chemo at that time anyhow. It's not going to help that he's really not a morning person to start with (smile). Everyone have a good Sunday. YES, the sun is finally out!!!
Thursday, May 13, 2004
YAY BAND !! The concert was great and Shane was able to go. He's really tired lately so he went to school for band yesterday, then went home and slept until after the rest of us got home from school. This morning I let him stay home and sleep. Hopefully he'll feel better later after he gets more rest.
Tuesday, May 11, 2004
Well, Shane made it to school on Thursday. I had taken the day off because we had planned that he would just go a couple of hours and then I would go and get him. I got to his school early and was in the office picking up his graduation announcements when he found me and said that he was staying the rest of the day. He went again on Friday, and again I took the day off because I was sure that he would get tired out and have to come home early. He stayed that whole day too. After school we went into his World History teacher's (his junior year) room where Mr. Benner sung the song to us that he had written for Shane and had sung to the school while Shane was gone. It was beautiful, and the words were so special. I'm going to see if it's okay if I can print them on here. Shane was pretty tired both days after he got home, but I think he was glad to be back. Their prom was on Saturday. Shane didn't go, but Kayla did. The weather was horrible all day. Rain, rain, and more rain. Right before it was time for all of the couples to meet at our house for pictures, the sun finally came out. They all looked so nice all dressed up. How fast they grow up. Shane did manage to go to post prom for a couple of hours later. He took a little nap before he went so I think that helped him to stay as long as he did. He ended up getting home around 2:00 a.m.. Kayla got home around 7:00 a.m. after going out for breakfast after post prom was over and going along on a friends paper route (crazy kids!!). So needless to say there was a lot of sleeping in around here on Sunday. On Monday Shane went to school and this time I decided to go back to work (I can't sit at home waiting for the phone to ring every day), it was nice to be back. He stayed the whole day again and was there when the senior class got together and had their picture taken as a group. I'm really glad he was there for that. Today he made it to school for band (1st hour), but then he had to leave to go to Ann Arbor so he could get blood and platelets. We knew it was definitely going to be an 'all-dayer'. He was pretty tired out and slept almost the whole time we were there. I'm glad that he got everything today because tomorrow night is his 'last' spring concert and he should be feeling pretty good for it now. It's going to be a sad night watching those guys play a concert together for the last time. Some of them have been together since 6th grade. This next month is going to be an emotional one I'm afraid.
The game plan for right now is to obviously get him to his concert tomorrow night first (remember, he hasn't missed one yet (he keeps reminding me)). Next week is chemo week, (already, I know). On the 20th the band is having a concert for the Veterans (so they can hear the songs that they will be playing in D.C.). Then the following week is the actual trip to Washington D.C. (I'm getting very nervous about this one). Then when they get back there is only 1 1/2 more weeks left of school. On June 2 & 3 we are going with Shane to CMU for orientation (Ahhhhh! (he still hasn't gotten anything back from U of M and we can't just sit around waiting and not make any other plans)). Then last but not least, graduation day on June 12th (I don't even want to think about that one yet)..... So much for only thinking about 'One day at a time' huh?
I guess that is all the news for now. I have a favor to ask before I end this. I have some prayer requests for a few of our NB friends that we have gotten to know. Little Paige is still fighting to be able to do the MIBG treatment next week, but she's having a real rough time. Michaela is doing better after her MIBG treatment, but is still having a hard time with things. Little Josh that I met in NY has just relapsed after a short time of "no diesease". And Christi has her tests starting Thursday (a very trying time), and needs higher blood counts so she can continue the new treatment that she is on. Then of course for Shane, that he can get to all of these very important things to him that he has coming up in the next few weeks.
Thank you so much for all of your prayers, and all of the support that you give us and.......
for thinking of Shane.
Oh, Adam's JV baseball team is still undefeated with only 8 games left. GO BOBCATS !!
Wednesday, May 5, 2004
I think tomorrow is the day. I'm going to see if I can get Shane to school for an hour or two. We went down to Ann Arbor for platelets today, otherwise he probably could have gone for a little bit. Keep your fingers crossed.
I'd like to take this time to tell you about Brandon, the boy in the picture with Shane above. He came up with a very special idea after hearing about Shane from his brother, Aaron, who goes to the Middle School. Instead of having his friends that were coming to his 11th birthday party bring presents for him, he had them instead bring the money, which he then gave to Shane. What a special guy! Shane was also invited to his party, but it was Friday night when he was admitted, so he wasn't able to go. Thank you so much to Brandon, your friends and family!! Also, Thank you to the other students from Bangor West Elementary who have given to us recently.
Here's hoping that the rest of this week keeps going as well as it is right now.
Sunday, May 2, 2004
We made it home late this afternoon. Shane is feeling better than he was, but not quite to where he was at the beginning of last week. "One day at a time."
Saturday, May 1, 2004
Well the week didn't go as I had hoped. His side effects from his chemo kicked in hard by Wednesday and didn't let up. I guess the obvious reason is because he got the higher dose of chemo this time. Thursday morning I was able to get him up, dressed, and to his band class because there was a surprise there waiting for him. Mrs. Stoddard's assistant, Sherry, had contacted the U of M music department and their 2 drum majors (last years and this falls) were there to see him, and they were bearing gifts. They gave him an official band T-shirt signed by the members of the band, a CD of their music, a DVD of their shows from the 01-02 season, a book that has the history of the band in pictures, and a large picture of the band on the field making the block 'M' at the Michigan/Ohio State game. He just kept saying, "Oh Wow", "Oh Wow" !! Mrs. Stoddard laughed and said he's usually more talkative than this. We went off into another room with them for quite awhile and by then Shane had perked up and really started talking with them. He loved it!! There were many Kodak moments. Thank you Sherry, and thank you Matt and Dennis for driving all that way so early in the morning!! On that same day his high school was having an assembly for presenting awards for the end of the marking period. His history teacher from last year, Mr. Benner, had written a song for Shane and was going to sing it at the assembly. I was really hoping that the assembly was in the morning so I could get him to it and he could hear the song after leaving the band room. It wasn't until the afternoon though, and by the time we got back home he was truly exhausted. He was back in bed by 9:30 and woke up for a little at 2, then he was back to sleep for the rest of the day. Kayla and Adam both said that everyone liked the song and that there were quite a few teary eyes when the song was finished. I was going to check to see if anyone had taped it so Shane could see it, but Mr. Benner said he would come to our house and sing it for him there. How special is that?! Thank you so much Mr. Benner!!
Now I am up to the present day, Saturday. After Shane slept all day Thusday, and wasn't feeling any better yesterday morning, I started running fluids in him hoping that might help him feel better. He hadn't eaten in over a day and the nausea and vomiting were hanging around. By the afternoon nothing much had changed and with the weekend coming (I hate when things happen on the weekends) I called Ann Arbor and talked to one of the nurses and asked if I could bring him down to be looked at. After talking with Dr. Yanik, she told me that he would wait for us so he could check Shane (even though it was going to be later when we got there and it was his wife's birthday). I was asked to just get some clothes on him, get him to the car (no grooming), give him a blanket and pillow, and get there, but drive safe. I can do that with my eyes closed and still make good time. Ahhhhh, this time though I brought clothes just in case. When Dr. Yanik saw him (we made excellent time : ) ), Shane was so tired acting that he could hardly talk and by then he was running a low fever. We were told that he was going to be admitted because it was probably an infection from his counts being so low, which is from the chemo. All normal stuff for a change. By last night, after more fluids and a dose of antibiotics, Shane was talking and eating more than he had the past 36 hours. He's not up yet this morning (Is it noon yet????), so hopefully he'll at least feel the same, if not better.
That's all for now. Oh, I forgot, we got a phone call from home last night saying that Shane had gotten a bunch of balloons delivered there. One being a large saxophone balloon. He had them read the card and they were from the band from the high school across town (Big cross town rival when it comes to sports). Shane had met their drum major, Jenny (his grade school principal's daughter, small world), when he was at the CMU drum major camp last year. How cool is that? We'll have to get them here if he's going to be here for much longer. Thank you Garber High School!!
Thank you again for checking in on Shane, and for all of you well wishes and prayers.
Monday, April 26, 2004
HAPPY BIRTHDAY SHANE !!!
Shane's last day of chemo went good. I can honestly say he also had a good time while he was there. He was told that since he is officially 18, he is now in charge of his medical treatment (Ahhhh!) But, if he wanted, things could just keep going the way they have been. That's what he chose (whew!!). There was singing for him while we were there, there was dancing (really), there were pictures, it was a fun time for him. As soon as our scanner and I quit fighting I'll update some of the photo section. I'm still hoping that he'll be able to get to school sometime this week. I was shooting for Wednesday but his side effects from the chemo are starting already. We'll have to wait and see. I have to remember, "One Day At A Time".
Sunday, April 25, 2004
Last week went pretty smooth. Shane started his chemo on Tuesday. He will have his 5th day dose tomorrow. Since Dr. Yanik wasn't there to write the order, whoever did it just repeated what he had while he was inpatient. He usually gets 28 mcgr's, or mls, or cc's (I know the number is right I just can't remember which metric amount it is). This time, and last time, he got 68 whatever metric amount. I guess they are giving him the most that he can get for his weight right now and seeing how he does with it. That kind of helps to explain why his counts dropped so much in between treatments last time. His nurses in Ann Arbor last week commented that he is more like his old self again. He is definitely talking more, and goofing around and laughing more, it's very nice to see. Tomorrow is his 18th birthday (we celebrated today), and Dr. Yanik told us that we could wait and get his chemo on Tuesday instead. We both said that he's been down there for his last couple of birthday's so it was fine with us. I guess I feel that it's a very good place for us to spend part of this special birthday. I'm sure he will have a good time. Shane has been feeling so much better lately that I do believe he is going to make it into school sometime this week. I'm sure in a day or two he's going to get hit with his delay reaction from the chemo and have a lot of nausea in the morning. I'm hoping though that he can get back there even if it's for just part of a day or two, or maybe more. He really needs to get out of the house, and not just to go to Ann Arbor for some form of treatment.
Kayla is back from New York. She had a really good time and her vocal group was given a 1. She managed to see quite a few things that we missed when we were there. Adam's ball team is still undefeated with 4 games coming up this week. Way to go guys and gals!!
This week is just the 1 day of chemo so far. We just go one day at a time because that's all we can really do, and keep hoping that things keep going smoothly. There is a little girl, Paige, that I have gotten to know in Ann Arbor. She is 3 and has the same cancer as Shane. She just received her transplant a couple of months ago and is waiting to start the MIBG treatment in mid May. She had surgery last week for her original tumor and before she was released to go home they noticed progression on her head like Shane's. She could really use some prayers her way, that she is able to get the treatment in a few weeks. Thank you for those prayers, and for your prayers for Shane. I see him on a day like today and I know that they help.
Thank you for checking in, and for thinking of Shane.
Monday, April 19, 2004 8:57 AM CDT
Easter Sunday went really well. I was glad that he felt good enough to get out of the house. The whole week went pretty 'okay' now that I think of it. We went to Ann Arbor on Tuesday for platelets. When I took his blood in again on Thursday he needed red cells so we went back again on Friday. His platelets were border again so he got another batch of those since we were there. I think right now he is going through the side effects of his radiation quite a bit. He had to shave his hair off last Tuesday because it was just EVERYWHERE. We were very lucky that a boy's mom that's on Adam's baseball team cuts hair. She came to our house after their game and shaved it while he sat on the couch and watched TV. He's had a couple of aches and pains here and there, but nothing that can't be taken care of with some medicine. He's still gets pretty tired out halfway through the day and not talking as much as his old self, but I think the back of his throat is bothering him from the radiation he got. He does quite a bit of clearing his throat and coughing. Since Saturday and the big Red Wing win, he's been a little more chatty. Hopefully we'll start to see a lot more of that. We are not starting chemo today because they never called with an appointment. Shane's doctor was out of town all last week so the arrangements were never made. I'm hoping to get a hold of someone today so he can start it tomorrow. I would have pushed more for today if he was having any pain, but since he's not, we'll wait.
I'd like to take this time to thank quite a few people. We are very lucky to live where we do. The school district that we live in, that Shane, Kayla and Adam have always attended school in, and that I work in, is such a wonderful place. We have been doing this for so long and at times I think that people may get tired of hearing about another 'fundraiser' or 'collection' for the Rezmers, but they don't. The last couple of weeks we have been given an overwhelming amount of donations. From the employees that work in our district. From the kids and their families at Bangor Lincoln Elementary. (Shane went to Bangor Central and they had a week of fundraising earlier this school year. They have always been so giving to us from the beginning.) From a boy at Bangor West Elementary whose mother contacted me to say that her son wanted to have his friends that are coming to his birthday party bring money for Shane instead of presents to him. From Shane's high school, John Glenn, donating the money that was raised at their talent show. Then there is the school that I work at, Christa McAuliffe Middle School. They took one week and did different things on different days (wear a hat for $1.00, buy a pop for $1.00), and they ended up with an amazing amount of money in the end. WAY TO GO CMMS!!!! Thank you everyone for everything that you have done for us.
This week we are hoping that he gets his chemo and that it goes as well as it always does. We are also hoping that his throat starts to feel better and that his amount of talking grows with that. Hope, hope, hope, that seems like all we have somedays. Kayla leaves for New York for her vocal competition on Wednesday. We got to hear their songs last week and they sounded really good. Adam has a couple of double headers this week for baseball, so far they are undefeated, YAY!! GO GLENN !!!
Thank you for checking in and for thinking of Shane.
Sunday, April 11, 2004
HAPPY EASTER !!! Just a quick note to wish everyone a very special Easter. We plan on going north to Standish for lunch at noon, then down to Frankenmuth for dinner after that. Shane says he's going. He wouldn't want to miss out on all of the food and entertainment that goes with it when we all get together. This will be a little bit of a test for him since he has only gone from the couch to about 20 steps beyond that since we've been home. He's still dragging quite a bit and still losing his hair. For the amount that sticks to the sheet that he sits on and his shirts, you would think it would be all gone by now. I think he's trying to save it this time but I don't think he will be able to. I've always liked him with that bald look. We will probably be making a trip to Ann Arbor at the beginning of the week for blood/platelets. His chemo could start maybe on Wednesday if we wanted, or a week from Monday so we wouldn't be splitting it up with the weekend.
For all of the bad news that I seem to have written about lately there is some good news also. Some of the other kids with the same type of cancer as Shane have some good news happening in their lives. Michaela (Kayla) IS going to be able to start her new treatment this week (MIBG). She really needs for this to work. Gabriella is now NED (No Evidence of Disease) and getting the 3F8 in NY to hopefully help keep her that way, and Zoe just found out that she is also NED right now, YAY!!!! Christi is at the White House this weekend for the Easter Egg Roll and her picture was chosen for the cover of the activity books that they will pass out for the event.(All of these kids have websites you can find if you go down to the bottom and click on Beebo's link, then go to their name)
Once again, have a Happy Easter, and thank you for all of your prayers and for thinking of Shane.
Wednesday, April 7, 2004
Things are going just 'okay' around here. Shane's last radiation treatment was Tuesday. It took longer to park the car and walk into the hospital then it did for them to do the actual treatment on him. He's still really dragged out, and I'm still hoping that it's just a side effect from the radiation. He is starting to lose his hair again but they said that that might happen. How much, we really don't know. I guess the next week is really going to tell us a lot. His Taco Bell craving has pretty much gone away now, but he still has quite an appetite from some of his meds. I am so glad that he is a TV watcher (Thank God for the Game Show Network). He is now also anxiously waiting for the Red Wings to start their drive towards another Stanley Cup. That will keep him happy for awhile.
Unless things start to change around here I'll probably start updating less frequently (which would mean that things are going okay). Thank you for being with us through all of this. Your prayers and well wishes still mean a great deal to us. There are a few other families that I have gotten to know that are also going through some trying times. Either their kids are also progressing, or they have tests that are approaching (a very trying time for some). Will you please keep them in your prayers also.
Thank you for thinking of Shane.
Sunday, April 4, 2004
Things are going okay so far. Less stressful than he and I were anticipating I think. We had cake and ice cream for Adam's birthday today (HAPPY 15TH ADAM!!) so the house had quite a few people in it for awhile. Shane stayed awake through it all and played football on TV with his uncle. I'm not sure who won but there was a lot of yelling going on. He's felt okay the last couple of days, just gets really tired out later in the afternoon. After a little nap he seems to get a second wind for awhile. There is never a down time for entertainment around here it seems. He has radiation on Monday and Tuesday and then he's done. I guess the next couple of weeks are really going to tell us a lot. Please keep him still in your prayers.
Friday, April 2, 2004
We did make it home around 5:30 today. So far, so good. I'll update more later.
Thursday, April 1, 2004
One more day........ We decided that it would be to late to go home after radiation, then getting blood, then waiting for paperwork and prescriptions, plus having to call the home care nurse after we got home and have her come out, then the fact that his blood pressure got up to 225(?)/130 this morning (with a definite headache), plus he has to be back here at 11 tomorrow morning for radiation, we thought it best that we stay. We should be able to leave soon after his appointment is done tomorrow as long as nothing major happens between now and then.
I forgot to say how for the last week Shane has been on a couple of steroids. One has a very special ingredient in it. The combination of the two has really brought on an appetite from him. In the last 4-5 days he has gone through 30-36 tacos from a local Taco Bell. The last couple of days I've gone and gotten 6 at a time. When his dad and Adam came a few days ago they brought 6. He even had a debate with me the other day about how the way he had it figured, there should have been 1 more left in the fridge here. I kept telling him that the bag was empty, but he wanted me to go and check one more time. I'm happy that the Taco Bell at home is just down the road from our house.
I'm happy that we're going home and I know he is too. I think we're both just a little nervous that everything is not just a push of a button away. We were so lucky to have 2 of Shane's original nurses from his diagnosis working this last week. It would have been so much harder getting the news we got and not having a familiar face to talk to. They have given us so much support and they can still get Shane to smile and laugh when you wouldn't think he would want to. His eye is good enough right now that he has stopped wearing his patch. He gets tired out easily, but I'm hoping that it's just a side effect from the radiation. He is much better though from last week.
Thank you everyone for your good wishes and prayers. He could still use them and I believe that they help. Thank you also for checking in on Shane.
Tuesday, March 30, 2004
The last 2 days have been pretty calm (We LOVE calm!!). Shane's blood pressure is finally staying down for longer periods of time. He still has double vision in his one eye, but even that has improved more. The radiation to the whole area of his brain will be done tomorrow. They then said they would like to do 2-4 days of focal radiation to a certain area. We're fine with that. We may try to get out of here on Thursday after his treatment, then just drive back for the rest. We've run into a little snag with Insurance and a home care nurse coming to the house, but they're still working on that and say they will get it straightened out before we go home. Shane is feeling pretty good right now. Still a little tired during the day, but that may be from the radiation. We've been use to having good months, bad months. Even good weeks, bad weeks. It's going to take a little bit of time to get use to good days, bad days, and sometimes even good hours, bad hours. Here's hoping the good far out weigh the bad. Kayla has been busy putting together pictures and things to hang on his wall here. She said the hospital walls had to go. They do make quite the conversation piece for people that go through here throughout the day. Adam has been down a couple of times and is staying busy with baseball. I'm glad they've both got good friends to keep them busy while we're gone. Thank you again for all of your prayers, please don't stop now, and thank you for thinking of Shane.
Sunday, March 28, 2004
Friday was a pretty good day. Shane was feeling better, the headaches and sickness were pretty much gone. His eye is starting to open but the double vision is still there so we got him a patch to wear for now. The bad eye was cutting into his quality TV time :). Some of the nurses from clinic and Child Life people (those special people in charge of keeping the kids happy and entertained) came to see him and he was having a good ole' time. Early yesterday morning he started to have a couple of problems. He was having what seemed like nerve pain on the surface of his side. That made his blood pressure sky rocket (which has been the most constant problem since we got here), then a headache followed. We gave him all we could in such a brief time to give him some comfort. When they all kicked in, he was out until late afternoon.
This morning it's 'so far, so good'. He's not a morning person though so until he actually gets up around noon (teenagers), I'll just keep my fingers crossed. Thank you all for your well wishes, prayers and messages that have been left. They are appreciated more than you will ever know.
Thursday, March 25, 2004
Shane's MRI came back showing 2 masses, 1 between the lining of his brain and his skull, the other at the base. We were very lucky to be able to get him in and started on radiation to his head yesterday. We're hoping that this will help with some of the problems he's having. As of last night he was more awake and talking a little more. His vomiting has stopped and he was down to 1 small headache. His left eye is still swollen and when he can get it opened he has some double vision going on. Hopefully the radiation will take care of that. He started his chemo last night (a little early from when he should) after a little pleading from me. I'm hoping that that will ease some of the little things going on through the rest of his body. Just a lot of waiting right now, and hoping that the radiation relieves him of his symptoms. There's more to be written about, but I'd like to give the radiation a few days to see how much it is going to help. Through all of this Shane is hanging in there, sleeping quite a bit from all of the drugs and still managing to smile once in awhile. Please keep him in your prayers.
Tuesday, March 23, 2004
I'm sorry to leave you all hanging since Shane was admitted, but things change here on a daily basis so I wasn't sure exactly what to write. To tell you that Shane's pneumonia is much better, and that his scans did come back as a "no significant change" (which are both true), would lead you to believe that everything is going pretty good. All of the dear special families that also have children fighting this cancer, or any other cancer, know that things are not always what they seem to be. After Shane's breathing problems were well on their way to getting better, he started to get some headaches and some frequent vomiting. It's been a good 24 hours of both now so a head CAT scan was ordered. That scan has come back questionable, so they are now trying to get him in for an MRI sometime through the night. I truly believe in the power of prayer, so I am asking for everyone to please, please send a prayer Shane's way. He could really use them. I'll update again when I know more.
Thank you for checking in and for thinking of Shane.
Saturday, March 20, 2004 10:16 AM CST
Okay, have we not tried this before? Did it also not go the way we had planned? You’d think that we would have learned our lesson. Our trip to Florida has been cancelled. Let me back up a little and bring everyone up to date. Shane’s tests were scheduled for Tues., Wed. and Thurs. this week. On Tuesday I let Kayla and Adam get out of their last hour so they could go down with us. It’s been a couple of years since they were there and that everyone down there has seen them. Everyone in Ann Arbor has heard the stories from Shane about “Life in the Rezmer household”, but it helps to actually see the faces behind some of those stories. It was a nice, short trip. Just long enough for Shane to get his MIBG injection, and long enough for us to make it to a few different departments and floors for a quick visit. After going to a couple of different places Kayla said she felt like she was “Show and Tell”. Everyone liked seeing them and how much they’ve grown over the last couple of years. Wednesday was uneventful, just his first MIBG scan. Shane did start with some pain in his legs that day so that was our first sign of “are we, or aren’t we” going. I brought it up to Kayla and Adam that since his pain would probably only get worse as the next week and a half went on that we might not be able to go. On Thursday it seemed a little better and his MIBG went fine. We then had to go to clinic to get platelets before his bone marrow test at noon. Still, things went fine. We made it for his bone marrow 1 hr late, but everyone was okay with that because they knew where we were. I knew he was going to take awhile waking up from the sedation because the dose of benadryl that he gets prior to his platelet transfusion usually knocks him out pretty good. They let me back in recovery after about 2 hours and he was no where near being awake. Dr. Yanik had come in to see how things were going and I asked him what the chances would be of Shane just getting 1 dose of chemo on Friday. Just to help him with his pain and hopefully hold it back until we got back from Florida. He said he could do that (gotta love that guy) and he called and made the arrangements. I went to the pay phone then to call home and tell Kayla and Adam to start getting their stuff together (Randy had his done already), that we may be able to go after all. Shane was finally waking up in recovery when I got back so we started getting ready to go. We had our discharge papers in hand, he was in the wheel chair, we were oh so close to leaving, and then he started having problems breathing. He was taking short, little quick breaths instead of slow deep ones. They hooked him up to the monitor and his oxygen level had dropped to 88 percent from 100. He then spiked a fever so they ordered a chest x-ray. That came back showing pneumonia in his left lung. He had now been declared………..INPATIENT. I think that they pretty much think that it was brought on by him swallowing some fluid wrong while he was put under. We got up to our old stomping grounds (7 West) at about 8:00. No clothes other than what we were wearing, no nothing. Shane was more than willing to sleep the rest of the night. Me, I had to get back on the phone and call Kayla and Adam again. Nothing like making your kids feel like they’re riding on a yo-yo. As of yesterday though we made the final decision to cancel. They’re okay with it. Adam has baseball tryouts/practice this week that he can go to now. Kayla will probably stay busy with her friends. Since her friend Markie was suppose to go with us I told her that when Shane and I get home, if her and Markie want to go down to Detroit to the malls down there, I would take them for a day (have I lost my mind???). The earliest that Shane may get out of here would be Sunday. His fevers have to stay away for 24 hrs (there’s ways around that one though) and his breathing has to get better. He still has the tube hooked to his nose blowing air in. We’re going to maybe try to lower it a little throughout the day to see how he does. I ran home yesterday and grabbed some things. Nothing like living and sleeping in the same clothes for 2 days.
So that’s where we are as of now. I’ll do a quick update when I know about his test results. Everything was still there from what I could see. Even though we’re not able to make our trip and Shane is missing out on his Science Olympiad competition today, the kids are pretty okay with having to stay home and I’m very thankful that the band is not marching in the St. Pat’s parade on Sunday (that would have crushed him to miss that). I am most thankful that this waited 1 week to happen so that he was able to play at the band festival last weekend. Most of the time things seem to balance out.
Another very good piece of information in case some of you may have forgotten, TODAY IS THE FIRST DAY OF SPRING !!!!! I think we all could use some nice weather for a change.
Thank you all for your prayers and for thinking of Shane.
Thurs.- 11th & Sat.-13th (Revised, sort of)
Saturday - Yay!!!! Shane's band got straight I's accross the board at Festival. He also got an email from U of M saying that he could still do an audition there and for him to contact them so they could figure out a time. What a good day for him!!
Thursday - I'm sorry it's been so long since the last entry. I started to do one on Sunday and then Shane started to have some pain in his back. I thought I would wait to see if it was going to last awhile, or if it was here for just a brief visit. I'm VERY happy to say that it was just for a brief visit. He missed school on Monday & Tuesday because of that, and from feeling sick from his chemo last week. He finally got back yesterday. He didn't have much homework to make up though because we've been having quite a few bomb threats between the high school and the middle school the last couple of weeks (I think 7 out of the last 10 days???). They've missed quite a few hours of school because of it. Darn Kids!! Things have slowed down now and I think (HOPE) that we're back to business. Shane's chemo last week went good. On Monday they took his blood for counts but we forgot to check on what they were before we left. Tuesday when we got there they said he needed platelets because his had come back at 11,000 (are we bad or what). The rest of the week was a breeze.
Shane's Band Festival is Saturday morning. His band will play and get rated either a I, II, or III. The I's will go on to States, the II's and III's get a "Good job, but you're done". They have been putting in a lot of extra practice time for this so I hope they do good. We found out this week that they are definitely not marching in the St. Patrick's Day parade this year. It's the first Sunday of our spring break so there were a lot of kids that were going to be gone. I haven't mentioned this before because I kind of believe in jinxing things, but we are planning to go to Florida for that week. We've tried before a couple of times to get away for a vacation as a family but have always had to cancel at the last minute. Here's hoping we're able to pull this one off!!
This week Shane is scheduled for an MIBG test (I think his 46th since this all started). His shot will be Tuesday, then he'll get scanned on Wednesday and Thursday. After Thusday's scan he'll get a bone marrow test done. He hasn't had one at U of M in well over a year. Mostly because we know his disease is there so there really wasn't a need to test for it, and also because he was getting them done in New York everytime we went. I think they (U of M) want to take a closer look at his NB cells. A couple of days after we get back from Florida (keep your fingers crossed) he's scheduled for an MRI. We know the tests will show that his disease is still there. Each time they have been done lately they either show no change, or that things are a little bit worse. We are truly hoping that there is at least "no change" this time. Once these tests are done, the results are in, and we are back from our trip, I think it's time to start really checking into anything new that may be out there. Even if it's tied up in paperwork, and even if it means traveling again I guess. I really feel like taking on the paperwork people right now.
So I guess this time I'm going to ask for prayers to be sent Shane's way. Prayers that these tests come back with at least "no change". That would be good news right now.
Thanks for checking in on Shane, and for all of your thoughts and prayers.
Saturday, February 28, 2004 8:34 AM CST
Well, most of the week went pretty good. As it went on though you could definitely tell that he was ready for chemo. I'm not sure what day his leg started bothering him, but by Tuesday he was using his crutches. The mornings are the worst since he wakes up being really stiff. Once he gets up and gets going it usually gets a little better. He did stay home from school on Thursday and Friday but worked on things here. He has a big power point project for computers that's due in a couple of weeks. It's suppose to be about your family and friends. His his going to be titled something like, 'My 2 Families'. He's doing it on us and then everyone at U of M. Since we live there a lot too, he says they're his 2nd family (I even sign over my parental rights to his one nurse whenever we walk through the door) He's been going through the 1000's of pictures I have taken over the years and pulling out the ones he wants to use (someday I'll get them in books, ha,ha). So many Kodak Moments to go through. He did feel well enough for us to all go out to eat as a family last night. That's right, everyone's schedule allowed for it to happen and everyone agreed to go (that doesn't happen very often, the agreeing part - teenagers).
Monday we have the earliest appointment to start his chemo. Hopefully by Tuesday his leg will be feeling better. He didn't need blood yesterday. That's one week without. Go figure, when you think he would need it because of the pain and everything, he doesn't. I'm sure starting the chemo though this week he'll need some sometime. He and Kayla recently finished their Segment 2 of Drivers Ed, late I know. I'm hoping once he is feeling good this time he can get out and drive a lot and finally get his license. Kayla needs more practice :), and Adam is taking it right now. HELP!!
I hope everyone has a nice week, and that wherever you live the signs that spring is coming are there. Thank you for checking in on Shane and for thinking of him.
Sunday, February 22, 2004 12:09 AM CST
Last week went by fast, especially with having Monday off from school. Friday we made a trip to Ann Arbor for just platelets. His hemoglobin was 11.6, that's really good for him. We made it there and back in time for him to get to practice one more time for his solo ensemble on Saturday, plus he had a senior senate meeting he wanted to go to. Yesterday went for Shane kind of like the little boy in the book, "Alexander and the Terrible, Horrible, No Good, Very Bad Day". He got a II at solo ensemble, which started everything going from there. He sounded so good on Friday when he played with Mrs. Stoddard. When it came his time to play he didn't start out very strong. The song is very fast paced so some of his notes I couldn't even hear. He just couldn't get out of that rut. When we got home he started working on his Science Olympiad project. Nothing on that was working right for him so he went to the computer to play around with composing music. He couldn't find the CD to get that running so he decided to play around with his Sim City program. That refused to start up for him and after a few tries he gave up. During all of this that was going on his leg decided to start bothering him. Just the icing on the cake. Quite a day. He did end the night on a much better note by going to see the movie "Miracle" with his dad. He liked it a lot and already has said we'll have to add it to our private "Blockbuster" collection of movies that we have.
Today already has started out much better. There was a large article today in the Bay City Times about the band being chosen to go to Washington D.C. in May for the WWII dedication. You can see Shane playing his instrument in the one picture. Then also in the mailbox this morning from yesterday's mail was an acceptance letter from Central Michigan University. He was very happy about that. I forgot to say that yesterday when he went to pick up his medal, the guy that gave it to him asked him how his knee was. We looked up and it was the drum major from CMU that Shane had for camp last summer (Shane had some knee problems while he was there). He and Shane kind of bonded and Shane had me take a picture of them together before he left camp. Small world.
An old friend of ours has had her life turned upsidedown recently by being diagnosed with Breast Cancer. I thought she was probably being hit with a lot of phone calls so when I found out I wrote her a letter instead. In it I told her some of the things that Shane has been through and some of what we have learned along the way. I also sent her a school picture of Shane just after he lost his hair for the 1st time in 3rd grade. Then also one of his senior pictures. I wanted her to see how far he has come and to know that all good things are possible.
That's all the news for now. Here's hoping that his leg problem doesn't get too bad before chemo on the 2nd. We may be in for a long week. Thank you again for your messages that you leave us, and for all of your thoughts and prayers. I guess our main prayer request this week is to get through the week without too much more pain, and for any new treatments that are out there being delayed by paperwork and whatever else, to be made available soon.
Monday, February 16, 2004 8:14 AM CST
We're almost to our halfway point in between chemos and so far so good. He did need blood and platelets on Friday but it was the 1st day off on our long weekend off from school, so it worked out okay. His transfusions don't seem to be lasting very long lately. We went from not getting anything for 3 weeks, to getting one every week for 3 weeks. There's no rhyme or reason to any of it anymore. I may be grasping at straws but the cold winter months always seem to factor in on how he feels and how he does. We did notice last week on the way to school that it's getting lighter outside earlier in the morning. I don't care what the ground hog saw, I'm shooting for spring-like weather very soon!!
This week Shane will be getting ready for Solo Ensemble for band on Saturday in Owosso. These things are so nerve wracking for me, but he always stays calm. He also is working with some other high school guys on their up-coming Science Olympiad entry. Their entry is a huge mouse trap type thing that has to cover a certain amount of area using different simple machines, and also have a certain amount of chemical reactions through it (something like that). Last year they had it working good and ran a couple of test runs before they competed. When it came time for them to actually start it going everything that could have gone wrong, did. Hopefully this year they'll have better luck.
Thank you everyone for checking in on Shane. There are a few families in our NB world that could use some well-wishes (and prayers) going their way. This disease just doesn't seem to be slowing down at all lately. Shane could use a few extra prayers this week also that he feels well next weekend. His Solo Ensemble is really an important thing to him and he missed it last year. Here's hoping!!
Sunday, February 8, 2004 2:15 PM CST
Shane had chemo Mon-Wed and everything went fine. He got platelets Tuesday after the chemo was done, so we're hoping that will hold him for a little while. The chemo that they gave him early on the 31st really did wonders for the problems he was having that day. He felt good yesterday so he bowled in the morning. I went in to run him some money and he was having a ball. Makes me feel kind of bad for trying to talk him out of doing it. I still believe it sometimes causes him some early pain, but seeing him have a good time, I'll just leave it up to him from now on.
The new trial in Ann Arbor doesn't sound like it's going anywhere. It sounds like it's another case of paper-work holding things up. I'm not really sure. Dr Yanik is also waiting to hear back from the Dr in Indiana about the proton radiation. My feeling with this is if Shane can't have the radiation with chemo, then I don't think we should try it. You always take that chance of letting one area get worse while you're specifically treating another area. That's a chance that we really can't afford. So for now he'll continue with the Irinotecan until we find out more.
Good news is...... Shane found out Friday that he was voted "Most Outgoing" from his senior class. Is anyone surprised?? He definitely has the gift of gab. Anyone that has had a chance to sit and talk with him knows that some of his stories seem to start at BC time. He is quite funny to talk with. He has some pretty definite ideas and opinions on a lot of issues and he'll tell you all about them if given the chance (You have to have the time though). Yay Shane, way to go!!
Thank you everyone for checking in on Shane and for all of your 'well wishes'. Keep Warm!!
Saturday, January 31, 2004 11:14 PM CST
Well we almost made it. Almost to school for 3 weeks, almost 3 weeks in between chemos without a transfusion, almost 3 weeks without any symptoms. Thursday morning Shane's knee was bothering him, so he took his crutches and went to school. He ended up leaving late in the morning and going home because it was bothering him too much. Thursday night he was fine as long as he stayed off it. Dr Yanik called early in the evening to say that Shane's counts (I had taken his blood into our local hospital after school) came back showing he needed platelets (16,000) and red cells. Shane talked with him on the phone for awhile, laughing quite a bit, before he gave me the phone to set up the time. Well after the phone call ended, things went downhill fast. The knee pain became the leg pain. His shoulder started hurting up into his neck, he started running a low fever. He crashed. Morning came, and instead of being able to just get him into the car and heading south for treatment, I had to go to the high school and take his U of M application into the counseling office so they could fill out their part. For any of you that don't know Shane, he carries himself like he has not a care in the world. I tell him quite often that if he moved any slower sometimes (when he's feeling good), he'd be going in reverse. Never in a hurry to do anything. That includes getting his application filled out, recommendation letters written (A big thank you to the teachers that only had a 24 hour notice) and getting it in the mail by Feb. 1st.(Hmmm, wasn't yesterday January 30th??) If he would have missed that deadline he would have been crushed. What a guy! Anyhow, once we made it to Ann Arbor they gave him a dose of morphine which helped. Dr Yanik came in to see him and asked him what the heck he had done to himself since they had talked on the phone (kidingly). One of our good nurses came up with the idea that since his chemo was going to start on Monday anyhow, why couldn't we just give him a dose of it while we were there. It usually gives him such a quick relief of anything that may be going on. It was okay'd, so he got platelets, chemo, then red cells. By the time we were leaving he was doing so much better. Today he officially ditched the crutches and was feeling fine. Yay!! This week he'll finish his chemo and hopefully everything will go smoothly. We're suppose to get another storm at the beginning of the week but the freeway is usually pretty good. It's the drivers that go 20 in the middle lane that get to me more. Shane can tell you some good road rage stories that have happened over the years.
Thank you all for checking in on Shane, keep warm!!
Sunday, January 25, 2004 8:41 AM CST
One more week down and no transfusions. What's up with that?? Shane's blood has been hanging in there. He's had a couple of days with minor nose bleeds. When I take his blood in though the counts come back okay (platelets in the low 20's, but for him that's pretty good without any transfusions). We realized yesterday that he's gone to school for 2 weeks straight. That has to be a record, or getting close to it. We laughed because Adam was recognized Friday for being one of the kids that hadn't missed any school the first semester. We were wondering if Shane was on the other end of that with the most days missed. Report cards came in the mail yesterday and Shane was very happy to see some grades on it. He had been getting I's all along until he could catch up on some things. In Physics he got a B on the exam, which he was really happy with. His GPA is hanging in there and I know he was glad to see that. Kayla and Adam both did very well also. We're very lucky to have 3 kids that take school seriously, and that learning comes to them without too much of a struggle.
I heard from Dr. Yanik that the CEP-701 trial isn't ready for him yet. On Feb 2nd he'll start another round of Irinotecan. I sent him some information on the Proton Beam Radiation that has started in Indiana. The department just opened a couple of weeks ago. I have been emailing back and forth with them since the fall, getting information and seeing if it would be anything that could be used on the tumor in Shane's back. That is the one thing that is a consistent source of pain (anywhere from minor to major). He's already had his 'lifetime dose' of regular radiation there, but this is a different kind. They can pin point exactly where to administer it without it hitting any organs or surrounding area. Dr Yanik said he would check into it and get back to me when he heard anything.
Our calender for the spring is slowly starting to fill up. I hate that because we always seem to jinx ourselves then. We've learned from a lot of past experiences not to make too many plans ahead of time. I guess we're being brave this year. Thanks for checking in, and for thinking of Shane!!
Saturday, January 17, 2004 2:46 PM CST
Exams are over!! I know a few kids that are happy about that. The week went by pretty smooth really. Even though it hasn't been too long since we had our 2 weeks off for Christmas, we were really hoping for a snow day sometime. It never happened, but it did get close a couple of days. Shane made it to school all week and was able to take all of his exams. He got a couple of his grades back on them already and was happy. He has decided to go back to bowling on Saturday mornings (ahhhhh!!). He has always loved doing it and after his old team fell apart he took a couple of years off (which made mom happy). His friend Stacy (friend from band and graduated last year, not his poor friend Stacy that has patiently lockered with him for the past 3 years, ha,ha), had an opening on her team so he took that spot. His first time was this morning and so far no aches or pains, hopefully that will last. I swear his bowling ball weighs almost as much as he does. We're almost at the halfway point in between chemos and so far no transfusions. I think probably this week he'll need one though.
I'd like to take this time to thank a lot of people who have once again shown how very special they are. The staff of Bangor Central (Shane's grade school) had gotten together in the fall and planned some activities to raise money for us (a bake sale and a pop can drive I know of for sure). They are all such special people there and at times I really wish we could just go back to the kid's grade school days. With the students there not even knowing who Shane or any of us are, they all pitched in and raised a surprisingly amount of money that was given to us just before Christmas. Thank you so much Bangor Central!! Also, just after Christmas I stopped into the office at the high school to see if Shane had missed out on any important 'senior' information lately. While I was there I was given an envelope with money that the staff had collected for us. Things like that, and how the staff always asks how Shane is doing, and the other different ways that they show they care, helps to explain part of the reason why on the inside of Shane's class ring, instead of his name or initials, he put "J.G.H.S. Forever". He really does love his school, and the people that work there continue to show us some of the reasons why. Thank you John Glenn !! With the price of gas lately, and all the driving back and forth we do, this will definitely come in handy.
Within the next 2 weeks we should know more about the new trial and if his name is getting closer to the top of the list. Until then we'll keep our fingers crossed that everything keeps running smoothly. Thanks for checking in and for thinking of Shane.
Saturday, January 10, 2004 6:56 AM CST
Shane had chemo this week, which at times seemed like it was a VERY long week. Everything went pretty well except for yesterday when he decided to get a little reaction while getting it. The week after chemo is usually when he gets the nausea, and then sometimes his face and ears get fire engine red. Well yesterday morning he woke up with a real red face and ears. Then while he was getting his chemo his arms started getting really red and hot (Who knows why, just his little trademark for this I guess???), so they ended up stopping it a little over halfway through. I don't feel real comfortable with that, but I understand. His platelets were down again so he got a transfusion of those before we left. The trip driving down there this week was interesting. If the roads were clear and the sun was shining here, they were snow covered and it would be snowing heavy down there, then vise versa. The past few years Shane and I think they've gotten much more snow than we have. We talked with Dr. Yanik earlier in the week. He said Shane's counts aren't high enough for the IL12-IL2 trial. I guess it's not a big surprise, but we were hoping they might let him try it anyhow. They want his platelet count to be at over 50,000. His at a good time run in the 30,000's. He did say that he put his name in for the CEP 701 trial. That is an oral drug that he would take 2x a day for 28 days (with Sat. & Sun.'s off). It's suppose to, or they're hoping, that it blocks the signals that help his type of cancer cells to live and grow. Hopefully by the time he's due for his next chemo his name will be up and he'll be able to try it.
Exams at school are this week so there's a lot of school books laying around here right now. Shane got his results from his ACT test and was pretty disappointed with them. At the end of his sophomore year he was around the 40th (?) in his class as far as GPA. He has missed so much school now these last 2 years he's always playing 'catch up'. Up until recently (year wise) he could pretty much self teach himself when he missed. Now with classes like Pre Calc and Physics, he needs to hear the instruction that goes with it and he's missing out on a lot of that. His goal hasn't changed though. He still wants to become a band director/teacher with a secondary in History teaching. I'm hoping he gives the ACT another try. Maybe consider the first one as a practice test and see if he does any better on a second one. Give himself a little peace of mind.
We're hoping for nothing exciting to happen during the next few weeks. His back/side is still sore from before chemo, but hopefully that will go away by the end of the week as the chemo works. The kids have 3 half days coming up for exams so they're looking forward to that. Thank you everyone for checking in. Please pray for a smooth January (another month that isn't always kind to him). Spring seems so far away right now doesn't it? (Some new pictures have been added)
Wednesday, December 31, 2003 3:20 PM CST
A very "Happy New Year" to everyone. Shane is feeling okay right now and Christmas came and went without any problems. He's been working on a lot of his missing homework the last few days and has put a good dent into it. The semester ends in a couple of weeks and he'd like to get caught up so he can get some actual grades on his report card. His ACT scores haven't been posted to the Internet yet, he's been checking everyday. I took his blood in yesterday and it did come back that he needs platelets (his are 14,000). Since he's not having any symptoms though we decided to wait until Friday to go down and get the transfusion. Tonight we have no plans other than to watch the Red Wings game and movies. Then tomorrow night of course we'll be watching U of M in the Rose Bowl. Just kind of taking it easy.
I hope everyone has a safe and Happy New Year. Thanks for checking in. GO BLUE!!!!!
Wednesday - 12/24 and Friday - 12/19
Wednesday, 12/24
The day before Christmas and all I can say is THANK YOU God!! Shane is feeling pretty good right now. We went to Ann Arbor yesterday to get platelets, which we kind of figured we would have to. I took his blood in on Friday and they were at 16,000. But with no symptoms we decided to wait and take more in on Monday just to maybe see if they would come back on their own (ha, ha). They were still at 16,000 Monday, which I thought was still pretty good because they hadn't dropped anymore, but we decided to go in to get some. He had signed some of his senior pictures for the nurses and others there and had fun passing them out. Some of the things he wrote were great. A lot of laughter yesterday in clinic. We can only imagine what goes through the minds of people that are there and are just starting this whole mess when they hear us there having a good time.
Please everyone reading this keep saying little prayers that Shane has a non-eventful next 2 weeks. Little things like blood transfusions we can handle, it's the big stuff like pain, that we have a horrible time with. Also, anytime of year for this to happen is so hard, but little Jake lost his battle last week and is now an angel. For this to happen now, and that his 5th birthday would have been on Jan 2nd, I can't begin to imagine what his parents must be going through. I'm sure they could use some prayers for strength going their way.
Thank you everyone for all of your well wishes, prayers, and for being with us another year. You help to keep us going. MERRY CHRISTMAS!!!
Friday, 12/19
The last day of school is here (yippee!!). It has been a very busy week. We finally got our tree Tuesday night. It's hard to find a time when everyone can go. They were pretty much picked over, but it's still a couple of steps up from Charlie Brown's tree. The poor thing is still sitting in the family room with just the lights on. Shane this week only missed school on Monday morning (I think??) because of being queasy. He was feeling good enough to take his ACT test on Saturday. We had gone down to Ann Arbor on Friday for his 5th day of chemo and he got one unit of blood while we were there. We thought we might pump him up for his test a little. His band concert was Wednesday night and he felt good for that also (Yes!!). They sounded really good again. I took a few pictures that I hope turn out so I can get them on here. Kayla's vocal concert was last night and they did really good. Shane even went and sat through the whole thing without complaining (It's a real good thing that the Red Wings weren't playing then). Once school is over we will all be able to take it easy a little. I'm pretty sure he's going to need blood again soon, but I'm hoping we can get through the weekend without it dropping too much. We're still hoping to get through these next couple of weeks without anything major happening.
There are a couple of little guys, and their families, that could use some extra prayers. Jake and Jordan are having a horrible time right now. This is such a bad time of year for some families. I hope they find the strength that they need to get through all of this.
Thank you all again for your support and for thinking of Shane.
Wednesday, December 10, 2003 - - - The "Lunch for Life" is still moving along and word is reaching more people. ** OVER $125,000 has been raised (YAY!!!!!!).** Thank you everyone who has helped out with this. Please keep telling everyone about it. If you don't know what "Lunch for Life" is, or know and would like to contribute, please go to the Journal Entry from October 14th and you can find out everything there.
Day 3 of chemo - Shane is feeling better (Thank you God). His pain is down to just his right shoulder, and even that today is better from yesterday. I'm hoping we can add a 5th day of chemo on Friday, we haven't heard yet. On his way out of the hospital yesterday (I went ahead to get the car), he ran into a lady that recognized him from his picture on this page. Her daughter, Gabriella, has NB also and was there getting her pre-tests for transplant. Yesterday was her 3rd birthday, what a way to have to spend it. He thinks it's funny when people that he doesn't know recognize him from this. It happened when we were in NY too. A lady (Christine), came up to him in the waiting room there and introduced herself. Her son, Josh, is also 3 and with NB. He's getting his transplant in NY now, and maybe getting released soon (YAY!!). They live in South Carolina. We have met so many special people going through the same thing as us.
I'm not exactly sure what is next on the agenda. Hopefully we will know soon. I do know that the next 3 weeks feel like they could last, what could seem like an eternity. Especially if they are anything like last week, hopefully not though. If he's feeling as good tomorrow morning as he did this morning, maybe he'll be able to go to school for a few hours before we have to leave for chemo. He'd like that.
Thanks for checking in and for thinking of Shane. I'll post more when I know more.
Sun, 12/7 and Wed, 12/3
Sun, 12/7 - Shane made it through the rest of the week without having to go in. This was by far, one of his worst weeks since this time last year. Chemo is tomorrow (Thank God!!), so HOPEFULLY this will take care of everything he's going through right now. I'll post again later in the week after he's had a couple days of it.
Wed, 12/3 - If we could only turn back time. What a complete turn around since the last time I wrote. Right now, Shane is back to where he was at exactly this time last year. What is it with the month of December? He's having some pain in his leg, lower back, and shoulder/neck area. He also started running a low grade fever today. The drugs that he's taking for the pain are knocking him out some of the time, which I'm glad for. He's not due for chemo until Monday and that seems so far away right now. Yesterday we spent the day in Ann Arbor getting platelets and blood. He was better yesterday then he was on Monday, joking around, doing homework, talking his head off. He even drove part of the way home last night. This morning he woke up and was worse than he was on Monday. I did talk him into sleeping in the family room tonight so he wouldn't have to do the stairs. We'll have to watch his fever and if it gets high enough he'll have to be inpatient. Right now I really don't think I would mind.
Thanksgiving already seems like it was a long time ago. Shane was feeling great and we went north to a little country hall in Standish to eat at noon. Then went south to Frankenmuth to eat again around 4:00. A lot of driving, but it was well worth it. The kids had a good time.
My request for everyone is to please say a little prayer to help Shane get to chemo on Monday. He has his Christmas concert for band coming up in 2 weeks. Through all of these years he hasn't missed one yet. He reminds me of this often. I'm just hoping the chemo takes care of everything that's going on with him right now. We did decide that he will start the new treatment (IL12-IL2) as soon as he can after this course of chemo. I have a feeling that December is going to be a long month.
Thank you for checking in on Shane and for all your needed prayers.
Monday, November 24, 2003
I'm sorry that it's been awhile since I wrote. Last week was soooooo nice. Shane made it to school everyday and only missed a half day on Wednesday to go down and get blood (platelets). If that's the worse thing that happens to him, we are doing good. Wednesday night after getting his platelets he went to the Red Wings game and had a good time. They even won, which made it even better. Somehow he managed to get through the week without the usual nausea and being sick that follows the week of getting chemo. I had started him back on a few "natural things" a month ago. Not for the nausea, but for help with his immune system. If that's the reason, or for whatever reason he felt so good last week and now, I am truly grateful. He's due for chemo the week of Dec. 8th. The new treatment, IL12-IL2, may be ready by then. So the big question is, do we do the new treatment now, not knowing what to expect and with the holidays, concerts, and other important things to him coming up? Or, do we do the chemo one more time because we know what to expect, and hope that it gets him through the holidays trouble free? We'll have to get Dr. Yanik to answer a few questions for us before we make the decision.
At this time of year I think of how really thankful we are for so many things. For all of the people that have been with us from day one and given their support through the last nine years. For those who have joined us along the way. For the staff (past & present)at the kids schools; Bangor Central, Christa McAuliffe and John Glenn. They have always taken care of Shane, and looked after Kayla and Adam all the times we have been away. For our families, friends and co-workers for their support through all these years. Without you this would be much harder for us. One last special "how really thankful we are" to EVERYONE (past & present) from the U of M who has ever worked with Shane. He trusts you completely and knows you are there to help him. You make him feel safe, and even get him to laugh at times when he's not feeling good at all. You have made the last 9 years so much easier for him to deal with, and he has become so attached to you.
Thank you again, everyone, for checking in and for thinking of Shane.
Wednesday, November 12, 2003
The question at the top of the page is the first line of a song I heard while driving down to Ann Arbor today. How unbelievably true is that?? We're down to one more day of chemo. As usual, so far, so good. He's even made it to school again this week. His nurse told us on Tuesday that they may try something new there soon. That you would just get the first day of chemo there in clinic, then the rest you would give yourself at home (I know a family that did this in another state). You should have seen the look on Shane's face. He doesn't like that idea at all (funny, huh?). He trusts his nurses completely, plus he kind of misses them, and others, when he doesn't go down for awhile. We just laughed at him.
The last couple of Decembers haven't been very kind to him. Hopefully this chemo will carry him through to the next chemo, and the next will carry him through the holidays. Here's hoping!!
Thursday, November 5, 2003
Testing is done, but nothing will be back until next week. From the quick glimpse that I saw it looked pretty much the same from the last one in NY. For those from Ann Arbor looking at it, since he hasn’t had the scan done there in almost a year to compare it to, I’m sure they’ll see some areas of progression. For those of you who don’t know what the MIBG scan looks like, after he gets a small radioactive injection on Tuesday, he gets the first scan on Wednesday, the 2nd on Thursday. On a screen the outline of his body shows up. Wherever he has disease it lights up like mini dots of paint. The more disease, the more solid the areas of spots are. There are a few areas that automatically light up from the injection (for some scientific reason), so I always have to remember where those are so I don’t let my mind wander too much when I see them. They’re onto me there though (they know I watch the monitor), so they always turn the screen off once the scan starts (darn!!).
I talked to Shane’s doctor also today. The one new treatment we’ve been waiting for ( IL12, IL2 ), will be ready at the end of November. It sounds promising and pretty simple. It’s not a chemo agent so that would give his body a little break from that. It’s an injection that he would get every other day for 12 days. The only semi-bad thing is that because it’s a phase 1 trial and he may be one of the first at U of M to get it, he may need to be inpatient for the whole time. That’s something that his doctor is checking into. Also, another new treatment that we have been waiting awhile for is hopefully going to become available the 2nd week in January. This one is even easier because it’s an oral pill that can be taken at home (wow!!). We are very lucky to be so close to having 2 new treatments to try. For now though, chemo is scheduled to start on Monday for 4 days. He has made it to school this week when we have been home long enough for him to go. His shoulders are doing good right now and the pain in his side has gotten a little better, so this week has been pretty good so far.
Thank you for checking in on Shane, and for all of your well wishes!!
Fri., 10/31 & Wed., 10/29
Friday, 10/31 - Radiation is done. On the way down for it yesterday though I found out that he needed blood, so it was back again today. He needed platelets and red cells so it was an all-day-er. We like going down during this week each year. The doctors, nurses and staff all dress up. Some of them are VERY creative. While we were there today I realized it was 9 years to the day that Shane got his first chemo treatment. We knew back then that we weren't going to be home for Halloween (which was a very important holiday to him at that time), so I called a few neighbors around the neighborhood and explained to them what was going on. They let us go to their houses trick or treating a couple nights early. He was happy with that. I went over to the adult side this afternoon to visit, and give a hug, to one of our nurses that has been with us since day one. She could always get Shane to do things he didn't want to when he was inpatient a lot back then. She's great!! I guess a couple of other families kind of remember and think fondly of the hospital this time of year also. They had visits from some others this week that we haven't seen in years.
Shane's test is still on for next week. I'll post the results when we get them. Wish him luck!!
Wednesday, 10/29 - Shane is down to one more day of radiation. Things have gone smoothly so far. We found out today that he can get his MIBG scan done next week. He hasn't had one in Ann Arbor in almost a year. We wanted them to have a current scan there so they would have something to compare future scans to. He is scheduled to start chemo on the 10th (that went by fast). Other then some aches and pains in a few places, he's doing pretty good. He's even made it to school this week (YAY!!). Yearbooks from last year were passed out this week and a page was done on Shane. It turned out really good. I've added it to the photo page here (it may be alittle hard to read though)..... That's all for now. Hopefully scans next week will not show any "big" surprises. A "good" surprise would be nice for a change. Thank you all for checking in on Shane and for thinking of him.
Saturday, October 25, 2003
Shane felt well enough to go to practice Wednesday night. I wasn't sure how he would do once he started moving around the football field so I stayed and watched. They've come a long way since band camp and are doing so good. Thursday morning he was still queasy so he stayed home. I think if school started around 11:00 everyday he'd be okay. He really does feel better usually later on in the day. We went to radiology Friday morning and he did end up getting his first treatment (it's hard to keep up). There wasn't much traffic yet on the freeway, and not much road-rage, so we made it back in time for his pep assembly at school. He was happy about that. Friday nights game started out so nice. The weather was great compared to the night before, the seniors were all annnounced, the place was packed with people. Shane had a special surprise visitor from Ann Arbor come to watch him. Last week when he was getting chemo he was telling everyone about his last game coming up. Shelia, from Child Life (they do an excellent job at keeping the kids smiling through everything), showed up to watch him. That was so nice. Well back to the "nice" night. Just as the band was starting to perform the skies above opened up, and the Rain Gods let loose. They still played great and their last show was fantastic!!
It's back to Ann Arbor on Monday for radiation. We have the perfect schedule this week. His appointments aren't until 4:45 so he can go to school all day, I can work all day, and we should still make it there, then back home at a decent time. Perfect!!
Thank you all, again, for any contributions you have made to the "Lunch for Life". Almost $100,000, wow!! Little Sydney's surgery went well. She is still having some problems getting comfortable right now, but hopefully in a couple of days that will be gone. Thank you for your prayers and for thinking of Shane!!
Wednesday, October 22, 2003
Well, if it's not one thing, it's another. Monday Shane felt fine and went to school, but had to leave in the morning so we could go to Ann Arbor for his pre-radiation appointment. Tuesday morning he was sick (he always has a 1 wk delay reaction from chemo), so he missed school. Now this morning his side was hurting (A new/old place of pain), so he missed again. Poor guy, it's always something. He's feeling better this afternoon so he's going to try and go to band practice tonight. I found out Monday in radiology that Friday's appointment is sort of a "trial run" for the actual treatments that will start on Monday, he'll then get them thru next Friday. They decided now that he's just going to get radiation to both shoulders and no where else. I'm not sure how I feel about that yet. I'm checking again into other things that are out there, but no luck hearing back from anyone yet. Hopefully soon!! Could you all maybe say a little prayer that he feels good for his last football game on Friday night. Also, little Sydney, whose dad started the "Lunch for Life", had surgery today to remove her tumor. I'm sure she could use some good wishes too.
That's all for now, thanks again for thinking of Shane.
Friday, October 17, 2003
LATEST UPDATE - Shane finished his chemo on Thursday and so far so good. On Thursday we met with the doctor in Radiology. It looks like he will get radiation to his right shoulder, left arm/shoulder area, right knee and they're also checking into a couple of areas in his hip. They'll do x-rays of everything on Monday and make a body mold of him then. I don't think they can give any radiation to his hip though. There's too much bone marrow in that area and I think it would effect his counts too much. We'll have to wait and see what they say on Monday. His actual radiation treatments will start on Friday (the 24th). They said they can consolidate them into 5 days instead of having us go down for 10. That will be nice. The last home football game of the season is next Friday also. The seniors in football, cheerleading, poms and of course "BAND" get recognized then. We made sure we got an early radiation appointment so we have plenty of time to get back for the game. He is really looking forward to it.
Thank you for thinking of Shane!!
Tuesday, October 14, 2003 - Below is an idea from a father (Mark Dungan) of a little girl (Sydney) who has the same cancer as Shane. He has come up with a very brilliant way of raising money towards research for a cure for Neuroblastoma, which at this time is so desperately needed due to the extreme lack of options available to those children fighting it. Please read the message below, or go to his daughters website for more information: http://www.sydneydungan.com/index.htm - *** AS OF SUNDAY, 10/12/03, AROUND $67,0000 HAS BEEN RAISED*** - PLEASE PASS THIS MESSAGE ON - An update on Shane will follow at the bottom. **NEW PHOTOS AS OF 10/12/03**
LUNCH FOR LIFE, THE PLEA
The "Lunch for Life" campaign is an ambitious fundraising effort to support research towards a cure for Neuroblastoma. We ask you to make a donation to the Children's Neuroblastoma Cancer Foundation (CNCF) in the amount of five dollars - just the cost of lunch for one day. Please do it for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. It can be because of the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's. Whatever the reason you choose, please do it, and do it now. Think of it as giving up one lunch this month for a cause that is important to someone who is close to you. Or better yet think of it as paying five dollars to be a part of changing history. It is a small price to pay and we will save lives, precious children's lives. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. In the not too distant future it will be your gift that allows a doctor to sit down with a family and say "Your child has neuroblastoma, but it is okay, there is a cure." We can do this. I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for us. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked of you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful. It is a tax-deductible contribution. ** YOU CAN GIVE DIRECTLY TO THE CNCF FUND HERE - (http://www.cncfchildcancer.org) - it is a secure web site and a preferred method to make your donation or you can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
or you can call this 800 number and give your gift by phone 1-866-671-2623.
It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference. You hold the future in your hands, please make it a good one. From the bottom of my heart, I thank you. I thank you for your prayers and well wishes and I thank you for helping me change the world. It is my daughter who has given me the strength and courage but it is your kind words that have inspired me. We all have had a lot to learn from one precious little girl. I thank you all for my purpose. We will make a difference. (THESE WERE WORDS (SHORTENED) FROM MARK DUNGAN. TO SEE HIS WHOLE PLEA, OR HOW MUCH MONEY HAS BEEN RAISED SO FAR, GO TO www.sydneydungan.com)
**Please can you pass this message on to everyone you know. Thank you all!! **
Cathy
Tuesday, October 14, 2003 – Shane’s 2nd day of chemo is done and he is already feeling MUCH better. Ironic, but there are times when we really do look forward to getting chemo. The tests from New York came back pretty much the same as they were before his first antibody treatment. There was an area in his left leg that disappeared, but the disease in his bone marrow looks pretty much the same. We were really hoping for it to do more in that area. So…, we’ve decided to stick with the chemo right now and not return to New York. It just didn’t do as much for Shane as it has for others and it was a lot for him to go through some days. I will miss the energy that city has. Also, the flower stands on every other corner, the fresh fruit stands on every other block, the squeaking of bus brakes, the sirens you hear at least every hour, oh, and our favorite, the honking of horns at least every 15 seconds (no lie). Tomorrow we have an appointment in radiology to get things set up for him to get the radiation to his shoulder, then chemo after that. A treatment that I had been checking into in the spring is very close to being opened at U or M. Hopefully by the end of the month they will get the final okay to start. For now, he will finish chemo, get at least 10 (?) treatments of radiation, and get back to school finally. Thanks for checking in!!
Friday, October 10, 2003
Shane and I got back late Wednesday night (or early Thursday morning). We had a nice visit with Dr. Kushner before we left. The MIBG result wasn’t in yet since it was just done in the morning. But because of the HAMA showing up in Shane’s blood already, and the fact that because of that, future antibody treatments are on hold indefinitely, we decided to start Shane back on Irinotecan (chemo) on Monday in Ann Arbor. I’m really kind of glad about that because his leg is starting to hurt pretty good right now and the chemo always takes care of that by the 2nd day usually. We also decided to check into Shane getting some radiation done on his one shoulder where he has an area of disease that causes him some pain on and off. Dr. Kushner then said to keep sending blood samples to New York every 3 wks and they will keep checking for the HAMA to go away. This of course will all change if the MIBG comes back and shows that his disease has progressed at all, then the antibody treatment will be over for him completely. There are a couple of new chemo drugs out there that I’ll talk to Dr. Yanik about on Monday to see what he thinks. But for now, Shane is glad to be home to march and direct at the football game tonight.
A new site that I would like to add for now, has pictures and links to at least 36 children (and young adults) with Neuroblastoma. They have more to add but at the moment ran out of room due to the overwhelming response. If you can't get to it directly from this link, copy and paste it in your address bar (for those who don't know how). Then click on any picture for their story. The link is - http://beebospage.users.btopenworld.com/NeuroblastomaCommunity.html
Sunday, 10/05/03
We are in NY and Shane had his bone marrow test done on Friday. We ran into a little snag Friday afternoon though when we went back for his injection for his MIBG test. When the department supervisor came out and called our name (I recognized him from our last trip when someone asked specifically for him to voice a complaint), I figured something was up. He said that they had the wrong date in their computer for Shane and had drawn up his injection on Thursday, which by then it had expired. The earliest they can get it now is Tuesday, making his test now on Wednesday. So we’re here until then for now. He had his MRI done yesterday morning, with no complaints from him (YES!!). Hopefully something will be back on that before we see Dr. Kushner tomorrow. I’m going to wait before I give my feelings on what I think we will be doing next. I don’t think anything will be ‘for-sure’ until the MIBG results are in, probably not until the end of the week. Thanks for checking in, and a big THANK YOU for anything you can do with the “Lunch for Life”, I really think this could work.
Thursday - 10/2 and Tuesday - 9/30
Thursday, 10/2 - I ended up taking Shane to Ann Arbor yesterday like we thought we would. They gave him a good liter of fluids which, once he woke up, made him feel better. Last night I received an email from Dr. Kushner saying that Shane tested positive for the HAMA. This means that he can't start the 2nd cycle of the treatment on Monday. We are still leaving in the morning though to go and have the tests redone there. I would rather have them compare their tests to their tests, then to have them compare theirs to someplace local around here. I really think everyone has their own special way of doing these tests so that's why I'd like them to be done there again. I'm hoping to meet with Dr Kushner sometime Monday to see what he has in mind for Shane next. When I find out something, I'll be sure to write.
Tuesday, 9/30 - Homecoming week ended with the assembly on Friday. The Seniors won the Spirit Jug for the weeks festivities, which Shane was very proud of. (He did make it to school on Thursday & Friday and felt fine) The big surprise (for me, I had gone to watch with the 8th grade) and one of the highlights of the assembly games was the winner of the 'lip singing' contest, Adam Rezmer. He signed up for anything, but was hoping 'not' to get called for that one. When he did, he went down on the gym floor in his blue and white stripped knee socks, blue shorts, football jersey, blue & white hair, face painted, and instead of singing to Michael Jackson's 'Beat It', he danced through the whole thing. Quite entertaining, I didn't realize he was so limber. Shane just stood in front of the band staring with his mouth open and shaking his head, Kayla was on the other side laughing with her friends, it was fun to watch. A problem that could have been big for Shane, but never happened luckily, was that on Wed. the band found out that they were not going to play during half time. They usually play during the introductions (background music)of the queens court, then do as much of their show as they can once the queen is crowned. This would have been horrible since he's already missed one game, is scheduled to miss the next home game, and things in NY were kind of scheduled around him being able to be home for this week, and especially the game. Anyhow, it all got worked out and they were able to play. Saturday night all three went to homecoming. They all looked so nice. I'll put some pictures on when they're developed.
Shane has had a pretty crappy week so far. The queasiness kind of went away a little over the weekend, but Monday it was back and he started getting sick then too. Today wasn't any better so I called NY, who told me to call Ann Arbor, and they said to bring him down in the morning if he wasn't any better. I know for sure we're going, he can't seem to keep anything down. We're scheduled to fly out of Detroit to NY, Friday morning at 7. His first test is sometime later in the morning. I haven't heard yet if he has the HAMA in his blood that I sent last Thursday or not. If things go well, he'll start the 2nd round of antibodies on Monday. I hope he can hold out that long without anymore problems. Wish us luck tomorrow, that he can start feeling better and will be able to go to school on Thursday before he has to miss again.
Thanks for checking in!!
**I've added this part because I think it's important for people to know as many stories about kids fighting cancer as they can. Following are links that will take you to their sites. These are some of the other kids that have Neuroblastoma also.**
www.madisonelizabeth.homestead.com/madispage.html
http://www.caringbridge.org/page/austin.d
http://www.simonsplace.org/
http://www.caringbridge.org/md/jaybarnett/
www.caringbridge.org/mn/carcar
http://ussgoblin.homestead.com/winnersandwarriors.html
http://www.caringbridge.org/nc/morganbarnes/index.htm
http://www.caringbridge.org/il/zoejowolsfeld/
www.caringbridge.com/page/lance
www.christithomas.com
www.caringbridge.org/nc/hopefor
www.caringBridge.com/canada/jonathanspage
http://www.caringbridge.com/page/josh
Tuesday - 9/23/03 and Saturday - 9/20/03
** 9/23/03 - Well, Shane is slowly missing homecoming week. This morning he was pretty queasy so he stayed home. I took his blood in and it came back that he needs platelets, so we're off to Ann Arbor in the morning. He has the earliest appointment so maybe he can get to school before the day is over if he feels okay. I send a blood sample to NY on Thursday (25th) so they can check for that one antibody that we don't want him to have. Then we have our first tests back in NY scheduled for Friday and Saturday (the 3rd & 4th). They helped me with that schedule so I could see one more of Adam's football games on Thursday night. Thank you New York! Our BIG hope right now is that Shane will stay well enough, and the tests come out okay enough, that he will be able to get the second course of the treatment starting on the 6th.
** 9/20/03 - As of 10:17 p.m., we are HOME!! It was touch and go for a little while today. Not with Shane, but the cab ride to the airport. I swear (and I already told Shane this), I will not get into another cab in New York unless the driver can speak English. This guy was the worst driver yet. He didn't understand me (except for LaGuardia), I didn't understand him (except the couple of times he swore). We did get there in record time though, even in heavy traffic.
Shane is feeling fine, no more fevers as of yet. He's a little tired but nothing out of the ordinary. A good nights sleep in his own bed should be the trick to take care of it. We are home for 12 days then we'll go back. We'll either be there for a few days or for around 15 days, depending on the tests. Before you think 'that's a long time to be there', I met a couple of families that, one had been there for 20 months (only home for a month total in between). Another family will be there for 1 year. They moved up from the Miami area because the mom wanted the family together. Her 3 boys, including the one that has cancer, started school in New York last week. His treatments don't allow time in between for them to have been able to go home like we can. Then little Lucy's family, that I wrote about already, from London that will be there until around February. Lucy's big sister started Kindergarten at a school by the hospital on Thursday. You always meet people that have it worse then you do. It always reminds me of how lucky we have had it.
Thanks for checking in and thinking of Shane!
Friday - 9/19 and Thursday - 9/18
9/19/03 - Shane reacted to the treatment the same today as yesterday. So after talking to a couple of people, and slightly begging, we were released today around 7:00, with the promise that if he runs a fever tomorrow we'll go back in. If not, were leaving here for home at 6:00 pm and should be in Detroit by 8:00, Yay!!
9/18/03 - Ahhh, what a difference a day makes. I should have kept my mouth shut. Today during the time that he usully reacts to the treatment he reacted with a fever and chills. Soooo, we are inpatient. They want to be safe in case he has an infection in his line. Usually it's an automatic 72 hr stay. I think if he doesn't get another fever and his blood cultures come back negative in the morning, we'll be able to leave tomorrow. I really think it was just a reaction to the treatment. Hopefully this time tomorrow we'll be back at the RMH.
Wednesday - 9/17/03
So far this week has been easier than last week. He still has some pain or itching all over during the actual treatment. Plus at night he still has the pain in his hands and feet, but that is a good thing. It means (I'm told), that his body hasn't built up a resistance to the treatment (hopefully). Until the tests are done before he starts the next cycle, that's kind of what we go by. Speaking of tests, the tests that were done prior to starting the treatment all came back with pretty much no change from April, YAY!! His last treatment this cycle will be Friday, then we fly home Saturday night. He'll be home for homecoming week next week, I'm glad about that. We're scheduled to be back in NY on Oct. 3rd for the tests that will show if there was any change and if he can continue. I'll also be sending a blood sample to them UPS earlier that week. That will tell them if he's built up a resistance to the treatment yet or not. If everything is okay, we'll stay the 2 weeks again for the 2nd cycle. Hopefully he'll be able to get a couple of cycles in, if not all four.
That's all for now. New Yorker's are getting ready for all the upcoming rain that's being predicted from the hurricane. This should be interesting. I'm glad it didn't happen last week when they had all of their dedications and memorials for 9/11. You really got to see things a little differently about that day by being here. There are so many more stories that people don't know about.
Thanks for checking in, and thinking of Shane.
Wednesday, 9/10/03 and Monday, 9/08/03
**9/10/03 - Shane's treatment yesterday and today went better then Monday's. He still has some pain halfway through, but has managed to mostly sleep through it. In the evening it still settles mostly in his hands, knees and feet, but last night he slept through the night. While he's getting the treatment we share a room with a little 1 year old girl from London. They came here in June when she was diagnosed and haven't been home since. Her treatment schedule will keep them here for most of the winter (which they are not looking forward to since they only saw a little snow once last year in London). Little Lucy has the opposite reaction to the treatment as Shane. She has a very, very hard time during the treatment itself, but has an easy time at night when she's back at their apartment. It's different for everyone I guess. I'm still told that it should get a little easier as he keeps getting it. Hopefully!!
**9/08/03 - We arrived in New York Tuesday night (2nd) around 10 without any problems. Wednesday started our 3 days of testing, and really they were problem free also. You just need a lot of patience when you're here (waiting here, waiting there....). I guess we've gotten use to that from years of experience. We did get to see the "Lion King" musical on Broadway Thursday night, that was so amazing!! On Sunday we received tickets to the "Blue Man Group" show. I thought they were going to be percussion type music, but they were that plus comedy (silent), plus just really "entertaining". Thank you nurse Beth and her NY connections for getting these donated to us.
Today was Shane's first day of treatment. I truly hope that it's true when they say the first few days are the hardest. They can pin point on the I.V. right where the solution will be when the pain starts. They were right on target. About half way through it started in his stomach and for him it pretty much stayed there the whole time. For some kids I guess it travels up and down their bodies. After the treatment was through, and he slept a few hours from all the meds he had gotten, the pain had pretty much settled into his hands and lower legs. He went to bed for the night with it pretty much still being there. He goes back tomorrow now at 8 for the 2nd dose. Here's hoping it's a little easier.
Thanks again for thinking of Shane!!
Sunday, August 31, 2003 7:06 PM CDT
The 1st week of school is done and over with. Everything went pretty smoothly except I did forget to give them all lunch money one day. I'll have to get use to that again. Everyone likes their classes and Shane especially likes his last hour because he's a student aide for a 6th grade band class.
We leave for New York Tuesday night and should be there by 9:30. Shane will have his pre tests on Wed., Thurs., and Fri. The actual treatment should start Monday morning and continue through the week. From what I understand we should be out of there each day by the afternoon. Depending on how much pain medicine he gets during the treatment, some kids sleep a lot right after, some go back to the Ronald McDonald House and are fine. We'll have to wait and see. He'll be finished with the treatment on the 19th, then we have a flight home on the 20th. We'll be home until around the 1st of October, then we'll have to go back and redo the tests to see if he can continue or not. If he can get the 2nd round it will start on the 6th.
The first home football game was Friday night. The weather was perfect. Especially compared to last year when it either rained or was so cold you couldn't stand it. Shane and Trevor did an excellent job. The whole band sounded and looked great. You can tell they've got more members, it sounded so much stronger. Yesterday we went to the opening U of M game against CMU. It was sooooo hot there. Quite a surprise to the 68 degree weather here when we left. There was 110,637 people there and I think 1/4 of them (including us), left after the 3rd quarter because of the heat, plus they were winning 37-7. Needless to say we all (Shane had a friend go also), got sunburned pretty good, but we had fun. Of course we can't go to a ball game without stopping at Mongolian Barbeque before we come home.
That's all for now. I'll probably write again after his treatment starts to say how it's going. Again, thanks for checking in and for thinking of Shane.
Friday, August 22, 2003 10:57 PM CDT
I want to start with a little bit about last Friday in Ann Arbor without full power. The Cancer Center was closed so we were sent to the Motts, 7 West floor. For the 1st few years after Shane was diagnosed we spent more time there then we did at home. There are still a few of Shane's nurses up there and we were very lucky that 2 of them were working then so we could see them. Shane's one nurse from the Cancer Center was there also to help treat the kids that had been sent over. It's amazing how much you take for granted regarding electricity, especially at a hospital. Nothing could be sent to or from the pharmacy, or where they get the blood for transfusions. The nurses had to hand deliver and pick up everything. They did sooooo much running that day. The air conditioning went out at noon, along with the T.V.'s and room lights (the halls had lights). By 2:00 it was getting pretty hot in there. Everything worked out fine for us and we were on our way home by 5:00.
We have a date for New York. Shane and I will leave on Sept 2nd. He has his pre-tests scheduled for Wed, Thurs and Fri. The 3f8/glucan treatment is then suppose to start on Mon (9/8). This is a completely different type of treatment then anything he's ever had. It was explained to him in April (when he was suppose to get it), what to expect. I have heard from other parents whose kids have already, or are now getting it, that some days are easier than others. He'll get the treatment for 2 weeks (mornings), then we'll fly back home on Sept 20th. In time for Spirit Week, YAY! After 1 1/2 wks home he'll go back for more tests. They will decide then if he'll stay there and continue with the 2nd treatment or not.
The 1st day of school is Monday. I think they are all ready to go back. Shane is feeling pretty good right now. He had a few days on crutches this week but he's feeling fine now and looking very forward to the first home football game on Friday. We were in Ann Arbor again on Tuesday for a platelet transfusion. While we were there I realized that it was 9 years to the day that we first walked in there and Shane was diagnosed. These last 9 years seem to have flown by. Adam was starting Kindergarten, Kayla was in 2nd and Shane was in 3rd. Adam is now starting high school, Kayla is in 11th and Shane is now in 12th. Wow!!
Thanks for checking in!!
*Small New Entry* - Saturday, August 16, 2003
** Check out some of Shane’s senior picture proofs that were added to photo’s. Next entry I’ll write what is happening with him going to NY, hopefully it will be more definite by then. Also, I’ll have to write about our 7 hr day in Ann Arbor yesterday with them being on auxiliary power. Quite different, but not bad.**
8/08/03 - Chemo is done. By Tuesday night he was feeling better from his aches and pains. He ended up getting a platelet transfusion Tuesday before his chemo. From that he ended up getting a case of hives. He hasn't had that happen in awhile. Now that this week is over I'll have to contact Dr. Kushner in NY again to see what openings for the 3F8/glucan they have available. Hopefully it will fit around a couple of important dates he'd like to be home for. By Tuesday he was tired of his hair falling out all over so we made an appointment for him to get it shaved when we got back. It's cute because his face and the part from his hair got so tan last week at band camp. Now it's surrounded by pure white. I told him he needs to get outside this weekend to get some sun and blend it together. He's doing very well with his new/old look and has gone out a couple of times already without a hat. What a guy!! They were talking in Ann Arbor after seeing him bald again, about the time (4 yrs ago) when he put U of M tatoos on his head when we went to a football game at the Big House. I was afraid that they might not wash off. Well they washed off easily, but because he got so much sun that day they left white M's on his head for quite awhile. He loved it!! Proofs from his senior pictures should be in on the 15th. He's had a couple of friends come over already to show us theirs. I'm getting excited.
Thank you again for checking in on Shane. For those of you who are in this same battle and are having a hard time right now, I am thinking of you all and hoping for the very best for you. Stay strong!!
I've added this part because I think it's important for people to know as many stories about kids fighting cancer as they can. Following are links that will take you to their sites. These are some of the kids have Neuroblastoma also.
www.madisonelizabeth.homestead.com/madispage.html
http://www.caringbridge.org/page/austin.d
http://www.simonsplace.org/
http://www.caringbridge.org/md/jaybarnett/
www.caringbridge.org/mn/carcar
http://ussgoblin.homestead.com/winnersandwarriors.html
http://www.caringbridge.org/nc/morganbarnes/index.htm
http://www.caringbridge.org/il/zoejowolsfeld/
www.caringbridge.com/page/lancewww.christithomas.com
www.caringbridge.org/nc/hopefor - Chanda & Jake
www.caringBridge.com/canada/jonathanspage
Friday, August 1, 2003 11:18 PM EST
Band camp is over!! It was a long week for them. The weather, other then rain today, was pretty good for them. As the week went on it did get hotter though. By Thursday it finally took its toll and I brought Shane home a couple hours early. He slept for a couple of hours and then was fine. He's having a little leg and arm pain, but is still planning on golfing tomorrow at our family reunion with his partner Uncle Jim. Adam, and dad make up the rest of the team. Shane & Jim's goal every year is to be the "high" scorers. They usually have a good shot at it (ha,ha). After they were finished golfing last year, and before we went to the reunion part of the day, Shane came home and made up 2 T-shirts for he & Jim that said, "We suck and we're proud of it". They have too much fun.
He made it for senior pictures this morning with enough hair that they should be fine. It's still falling out but it just looks really thin (fine) right now. We'll have to see if it's going to keep going or stop. He may have to go back to the bald look again. I'm excited about his pictures. They took so many, outside, inside, of course with a U of M and JG band theme in a few. Proofs will be in on the 15th.
That's all for now. Chemo is next week. That's pretty sad when you look forward to your child getting his chemo, but I know his aches and pains will go away after getting it. I want to let you know that little Christi ended up not having her 2nd surgery. Everything that was wrong cleared up during the night before it was scheduled. Little Madison got to go to Disneyland last weekend and meet Cinderella. She is doing radiation right now so she could still use some good wishes going her way.
Thanks for checking in!!
Monday, July 28, 2003 9:16 PM EST
Band camp has started and the first day went well. They've added about 20 students this year so they are now up to almost 70 total. They've come a long way since only having 32 in his freshman year.
I received an email last week from New York that said Shane would be able to get on their 3F8/Glucan study. The only problem was the first available date wasn't until August 25th and he would not be able to have chemo for 4 weeks prior. He is due for chemo next week. After thinking about how he might need it badly after this week of camp, and how he would not be able to get it in order to go to New York, I contacted Dr. Kushner and he agreed that he could start the treatment there at a later date. I'm not sure when though, but he will be getting his chemo in Ann Arbor next week.
Right now we're having a small dilemma here. For some reason, after being on the Irinotecan for 17 months, his hair is starting to fall out badly the last couple of days (very bad timing). I called the place where he's getting his senior pictures taken and they're squeezing him in Friday morning. Hopefully, he'll still have some hair left then, and that it's just thinning out like it did when he was on a different chemo before.
That's all from here. If you would, would you please say a prayer for little Christi who had her surgery last week to remove her tumor. She was having some problems after and now has to go into surgery again tomorrow to try to fix it. In the mean time, she is going without any treatment and it is so important to keep things going. Also, a prayer for a little girl named Madison who has had it really rough the last couple of months. The next few weeks don't look like they will be much easier for her either.
Thanks for checking in and for thinking of Shane.
Monday, July 21, 2003 3:20 PM CDT
Shane made it through the whole week of camp. I got to the stadium at CMU a little early for the show. All the drum majors and color guards were out on the field doing their final practice for it. Shane says there was about 210 of them altogether. They were all wearing khaki shorts and camp shirts. Most of the girls had their hair pulled back and most of the boys were wearing hats. I thought it would be easy to pick him out out there, you just look for the shortest one (smile). It wasn't as easy as I thought. Trevor's (our other drum major) mom and dad came and we all started looking. We finally found Trevor, but not Shane still. Finally I was looking around and saw him sitting down in the front on the sidelines. I went and talked with him and he said he was going to sit out the show because his knee was bothering him. He was okay with it. After seeing where he would have started at the beginning of the program, then where he would have ended up at the end, and all that he would of had to do to get there (he had to go about 40yds in 32 counts, to hear him tell it is quite funny), I was kind of glad about his decision. It was soooo hot down on the field and they had to stand there and move for so long, I felt bad for them. When it came time for them to demonstrate their directing abilities, the girl who ran the sick room and looked after Shane during the week, went over and had him go out with everyone for that part. I'm glad that he got to do that much. He had nothing but good things to say about the whole week. From his room mates, Trevor was one of them, to the food (which is a surprise because he is so picky), he had a great time. He seems to have done a good job with his dressing changes and flushing his lines, I guess he's got a new job now that he's home. Last night though as I was putting some of his things away, I came across both of his patches that he was suppose to change during the week. Still packaged ever so nicely, with the days written on them for when he was suppose to put them on. Hmmmmmm, maybe that would have helped a little with his knee pain.
There's nothing new to report as far as any new or different treatments. New York said there is chance that he could get the 3F8 antibody sometime in August. I'm not going to hold my breath, just wait patiently and see what happens with that one. The other treatment is still on hold from what I understand. I may contact that doctor again this week to see if there's any more news regarding it.
If you have time, please check out the links below to Christi's, Jonathan's and Jake's websites. Christi is having surgery on Thursday on her tumor that's around her aorta. She is just getting back on Wednesday from her Make A Wish trip to Japan and Hawaii (wow!). She did get good news while she was gone that her scans after doing her 4th, 3F8 treatment showed signs of improvement... Jonathan has been taken off the 3F8's after 3 treatments. One of his tests showed positive after being negative before. They are deciding what to do next.... Little Jake is currently doing the 3F8 and is having a hard time with it. Hopefully something good will come out of it for the tough time he is having.
Thanks again for checking in and for all of your well wishes!!
Thursday, July 17, 2003 - 10:00 a.m. EST
I saw Shane yesterday to steal some blood from him. He looks pretty good. He sounded really tired Monday night, but to see him yesterday you wouldn't know it. He's having a good time and the walking all over campus doesn't seem to be bothering him too much. I did go and get him an elastic knee brace for his good knee while I was there. He said he kind of twisted it doing a turn, I can see that happening (smile). Blood counts were okay, so he's all set for that. He's been wearing his hat backwards while he's there so now he has this white stripe going across his forehead. Senior pictures may have to get put back a little (ha, ha). He performs Saturday morning then they are done. It's going so much better then I thought it would.
**** 7/12 - Chemo is over and it went really well. It seems like there are more kids his age down there now then there have been in the past. Not for his type of cancer, but a variety of cancers. Before, it use to be more toddlers and young grade schoolers that you saw more of. His MRI results came back and they show stable disease (no change), compared to the previous MRI. To us that is great news!! His tumor is more long and flat with extensions and runs along his spine the length of 2-3 of his vertebrae (?). The big relief is that no part of it came any closer to his spinal column. I'm still checking into a few things, one being NY again. Another is the new treatment that hasn't started yet and has been on hold for a long time, the last is a different type of radiation for his tumor that is done in California. When I know anything I'll get it posted.
Well, Shane leaves for Drum Major camp tomorrow. He's been doing his dressing change himself this past week so hopefully he's ready for this. I guess the main thing is if remembers to do it at all, teenagers. I've decided to stay home and just go and check on him a few times during the week. He'll have the cell phone and he better call every night, if not more. This is where the forgetting usually happens. Adam found out today how long he's going to be gone and what his (Shane's) "new" responsibilities for the week were (the medical stuff). He just shook his head and laughed. This is going to be interesting.
This morning Shane got a package in the mail. If you remember, he was in the 'All Star Band' at Western MI in April (the worst ice/snow storm of the winter happened that day). The week after I wrote the guest conductor, David R. Holsinger, thanking him for giving Shane the oportunity to be a part of that, and that he had a new fan. This guy is soooo great as a person and a conductor!! Well today, he got this big enveolpe with 8 of Dr. Holsinger's CD's in it, and a picture with a message written on it for him. He was totally thrilled.
This coming week is going to be busy with Shane at camp, me driving to check on him, Thursday & Friday night Adam has a ball game (he made one of the All Star teams, yeah Adam) in Hamtramck (where the heck is that in Detroit), so we won't be bored for sure. **If you would, would you please say a couple of prayers for a couple of kids in Ann Arbor who will find out this week if they've relapsed. The girl, who is 18, couldn't graduate from high school this year because she missed to much school this year and was short some credits. She was okay with it, and was looking forward to playing another season of basketball in the fall. The boy is around 10. His hair is almost as long as Shane's and they were laughing about it yesterday.**
Thank you everyone for all of your support and well wishes that you send us. Check out the top two new pictures from our trip to Ann Arbor on Wednesday.
Thursday, July 3, 2003 11:42 PM CDT
Shane's leg is much better this week. His MRI on Tuesday went well. We went down late in the afternoon on Monday and got a room at the Red Roof to use before the appointment. Then of course we went to the Mongolian Barbecue to eat, we love that place. After his test we came home. It ended up being around 6:00 when we pulled in the driveway, but we got to sleep in our own beds. We haven't heard back on the results yet. Probably next week when he goes down for chemo. I guess I'm not in to much of a hurry for this one. He did get platelets and red cells today. He was really looking white yesterday. That ran pretty smooth other than they were really, really busy and traffic coming back north on the way home was pretty bad.
Some good news, Shane and another senior (Trevor), are going to co-drum major this year (I hope I have that right). I'm glad that they're sharing the responsibilities. He is scheduled to go to CMU now from the 12th - 17th for drum major camp. I'm not sure what I'm going to do about that one. I may stay in Mt Pleasant some place during the week to be close by, I haven't decided yet. That's it for now, chemo next week, test results next week, then camp the week after that. Pretty soon it will be time to go back to school (ha, ha).
Friday, June 27, 2003 11:30 PM EST
Thank you Dr. Yanik and Northwest airlines!! We found out that we will get a refund on the tickets that we had to cancel in May. That's one less thing to worry about.
This week Shane's right leg has bothered him some. It started Sunday, the day after he worked at the car wash. He may have washed one to many cars, but he was feeling really good so he wanted to be there. It seemed a little better today so maybe he's almost through with it. If not, he's not due for chemo until 7/6, which will make for a long week coming up. Well I got a surprise call from U of M today. They have scheduled an MRI for 3:00 a.m., yes A.M., for Tuesday morning coming up. I had emailed the Dr. in New York earlier this week, just to remind him that we were still here and waiting for anything new that may become available. He did email me back (he is always good about that) and asked how the tumor in Shane's back was. I responded by telling him that the tumor really hasn't given him any problems (we know it's still there) since his radiation there 1 1/2 years ago. I planned on asking Dr. Yanik next time we see him if we could check on it again soon. I guess I won't have to now.... Test time, I hate it!! Those of you that are also doing this battle know exactly what I mean.
Last thing.... I took his blood in on Wednesday and he squeaked by again. His platelets are hanging around in the low 20's, his Hem. was 10.2 (pretty good for him) and his ANC was 1.1 (not bad also). He almost seemed a little disappointed. I think he may have been planning a little road trip down there to goof around with some nurses. It's kind of funny that when you go down there a lot, you get tired of it. But, if you don't go down for a while, it seems like he kind of starts to miss them (smile).... Hope for at least "no change" on his test Tuesday!!
Saturday, June 21, 2003 5:10 PM EST
We are officially on summer vacation (it's about time!)!! Shane made it to school both days last week for his exams. He took most of Monday's though in one of the counseling offices because he was feeling sick. I'm glad he was able to stay to do them. He hasn't heard yet officially on who made it for Drum Major. The band had their 1st car wash today (first of many) to start raising money for their trip to Washington D.C. next Memorial Day. They've been invited to play at the WW II Memorial dedication. They are all very excited about this. Shane is still feeling good and was able to work at the car wash for a few hours. He has been driving up a storm lately. I think he wants to get those hours in so he can take segment 2 before school starts. We just squeaked by for not having to get platelets on Friday. I'll have to take his blood in again early this week to see where it's at. Keep praying that he stays feeling this good!
Sunday, June 15, 2003 1:42 PM EST
Chemo is done and so far so good. He is really feeling pretty good right now. He played at graduation yesterday with no problems at all and he was up early enough to go to church with Kayla and I this morning. For those of you reading this that have children with cancer, you know what I mean when I say I hope this isn't the quiet before the storm.
Try-outs for drum major were at the end of last week. There are quite a few trying out that would be so good at it. He should find out Monday or Tuesday if he made it. I have to call this week and get an appointment for him for his senior pictures. Wow, it's hard to believe that it's that time. This all started the week before he began 3rd grade. Through the majority of it all, time seems to have flown by. Adam was starting kindergarten then, he will now be in high school next year. **Good news, 1 1/2 more days of school!!**
Wednesday, June 11, 2003 8:29AM EST
Chemo is going good so far. I think we may have gotten out of there in record time yesterday. We left here at 11:30 and were back around 5:30. He's going to get 4 days again but I'm hoping we can skip Thursday so he can go to school the last full day, then go Friday after his half day of exams. With all of the school he's missed, exams should be interesting this time. He usually does pretty good, we'll see. If anything, I'd like to use them as sort of a marker to let us know where he's at with everything. His cold is still hanging on. He's down to 2 pills so I may have to try and get him something else before it gets worse. He has taken an interest in driving again. He's been behind the wheel more this last week then he has the last year. He forgets to put the seat back though when he gets out. So when we go out there we have to reach around (there's no way we can get in with his seating), and turn the key so we can slide everything down and back before we can begin to get in. 2 more days of chemo, 3 more days till he plays at graduation, and the best one, 3 1/2 more days left of school!!!!!
Thursday, June 5, 2003 1:21 PM EST
Shane made it back to school today. He's still not completely better, but a lot better then he was. It's mostly down to just a constant cough right now. Tomorrow morning at school the band is performing at the assembly, he's looking forward to that. I've heard that another little boy from Ann Arbor is on his 2nd week of treatment in NY. I'm anxious to hear how he does with it. It's back to Ann Arbor for us for chemo next week. 8 days left of school!!! Can you tell we're excited!!
Monday, June 2, 2003 5:12 PM EST
Well, he's now missing school because of a Nasty(!) cold he woke up with yesterday. He had been fine on Saturday, playing games on the T.V. with a friend for hours, but woke up Sunday totally plugged up and coughing. I started him on some medicine yesterday right away, so hopefully he'll get better quick. He's due for chemo again next week. Those 4 weeks went by fast. Nothing new on the 2 new treatments we're waiting for. When I look them up on the Internet they both still say pending for one reason or another. **** 11 days left of school!!!!!!
Friday, May 30, 2003 11:30 AM EST
The concert last night was great!! Shane as been feeling good and has gone to school all this week except for getting blood on Wednesday. Last night during their song "Respect", he was on stage, shirt untucked, no tie(along with the others), looking very relaxed and "getting down" while he played his sax. While this was going on, two other male band members, dressed as very pretty females, sang the song. It was something to see. He was called up at the end to get a trophy for being the Drum Major this year. What an accomplishment for him.
Tuesday, May 27, 2003 11:38 PM CDT
Well he made it to school today, even stayed after for band practice. His side and neck are okay, his leg was a little sore, probably from all the walking he wasn't use to. I took his blood in and he does need some red cells. You can really tell by his color. His platelets are still around 30,000, very good for him, so he won't need those tomorrow. Figures, he's finally feeling good enough to go to school and he has to miss already. This should get him all pumped up for his concert on Thursday. He even did some driving tonight, something he hasn't done in a looonnngg time!!
Monday, May 26, 2003 6:06 PM EST
It looks like school is a go for tomorrow. He's feeling much better. He might need blood sometime this week, he's looking a little white. If that's the worst thing we have this week, we'll be all set. The big band concert is Thursday night. I know he definitely won't miss that. Down to 16 days left of school!!
Saturday, May 24, 2003 1:30 p.m. EDT
Shane is feeling better today. Moving around more, not sick as of yet. We did go to Ann Arbor Thurs. and managed to see Theresa & Brian before they left. I had made copies of pictures that were taken of them together through the years. They were quite cute. Most of them were from the reunion picnics they have down there in June. It's a nice way of everyone getting together for something fun, instead of seeing each other just during a treatment. We came up with a picture for every year except the last few and made sure we took a couple more before we left. They talked about so many stories that I had almost forgotten. One was, one morning we had car trouble going down during 8:00 traffic. We were almost there and we got a flat. It was pouring, traffic was crazy, and we had a day packed with pre-transplant tests. We got out to walk to the Rest Area we had just passed and a man pulled up and offered to let us in out of the rain and use his phone. I went to get in, Shane was only 9 and he said he didn't want to because the man was a stranger. So we're out on the side of the freeway in the pouring rain, traffic flying by, and I'm trying to explain that sometimes it's okay to trust a stranger. It's funny now.
We're going to miss seeing them a lot!!!
Wednesday, May 21, 2003 2:28 PM CDT
Shane hasn't been to school since Friday. Sunday he started being queasy and getting sick. He usually has that right after his chemo. His neck started hurting then too, but his leg is all better. Now his neck is better, but his side hurts. It's hard to keep up on where he wants the heating pad put. He's feeling better sickness-wise today. I'm taking his blood in for counts later, he looks like he might need some. That would work out good because then while were down there he can see Theresa before she leaves. I've been reading about quite a few other families having problems in NY. One family showed up for their 1st day of treatment and found out it had been moved back a week. They ended up staying 3 wks instead of 2. Another family found out via email that theirs was cancelled after they had made arrangements for the 2 wks already. I don't know what's going on there. I know the ones that are getting it, it seems to be helping some. I hope they get it straightened out.
Sunday, May 18, 2003 5:14 PM CDT
Shane's chemo went really well this week. He went in on crutches Mon and had gotten rid of them by Tues. It is so much easier now that he has his broviac in. They just hook him up and let it run. He made it back for last hour at school on Thurs., then was able to go all day Fri. While we were in Ann Arbor we went over to the hospital to visit. We found out that Theresa is leaving next week. She is in charge of keeping the kids happy, busy and entertained while they're inpatient. She does such a good job of it. Her 1st day on the job was Shane's 1st day of chemo. We have a picture of them together that day. It was halloween in 94'. Theresa was dressed like a Wizard and Shane was someone from the Power Rangers. It's quite cute. We're thinking of going down Thurs for her last day. Shane figures he was there for her 1st day, he should be there for her last. Her husband Brian use to volunteer up on the floor also. When Shane had his 1st transplant, Brian came in the room (Shane couldn't go out of it) and they used tape and made a 4 square board on the floor. They would play and I would hold the IV pole so it wouldn't fall over. We're really going to miss her.
I sent out a bunch of letters to different Dr's yesterday to see if there may be something out there. Dr. Yanik is checking into a couple of different things also. Maybe we'll come across something. There are a couple of families going to NY for tests to get on that new study. I really hope they have better luck then we did.
Friday, May 10, 2003 9:30 PM CDT
After many phone calls yesterday between Midland, NY, and Ann Arbor, I know for sure the MRI report got there. Dr. Yanik called tonight and said he did talk to Dr Kushner and he didn't mention the MRI report, but he did explain that there was another study going on that had recently been closed by the FDA(?). They need openings for those kids to continue the treatment that they've already started (the 2 treatments, the one closed & the one Shane was going to start are similar I guess). So there were more kids then there were open spots(?). They felt they would benefit more from it then Shane. I understand that, but it doesn't make it any better. Dr. Yanik is going to check into a couple of other things that may be out there. In the mean time Shane will get his chemo next week for 4 days instead of 3. He's a week past when he would have gotten it and his right leg is showing it.
Wednesday, May 7, 2003 10:00 PM CDT
What a difference a few days make. Around 5:30 tonight Dr Kushner called. Part of the conversation is just a blur, but the bottom line through the whole thing is that they have cancelled Shane's treatment in NY. His reasoning from what I could understand, is that he never received the report from the MRI, and that was holding up the whole process. They are wondering about an extension coming off of the tumor in his back, and how close it goes to his spine. To say he caught me off guard does not even begin to explain what I was feeling during that conversation. I think I ended up hanging up on him, I'm not even sure. I plan on calling Dr Yanik tomorrow to see if he knows what's going on. I did start making phone calls to Midland to track down the report.
Saturday, May 3, 2003 1:57 PM CDT
Yesterday after school I got a phone call from Ann Arbor saying that Dr Kushner wants Shane to get an MRI done. Ann Arbor couldn't get us in for 2 wks so they called Midland and got us in for 12:30 a.m. last night. He was not happy to say the least. MRI's have been his worst test through these past 9 yrs. Probably because they're so long and he has to lay so still. After him protesting for a few hours we got there and they were all very nice and great with him. He got to take in a CD that they played so he could hear it (U of M Marching Band CD of course). That was a first. Plus it being so late and him being tired (we didn't get home until 4:30 a.m.), I think that helped a lot. We have our flight through Northwest again out of Detroit. We never seem to have enough notice to get an Angel Flight or other discount flights. Once he starts the treatments though we will have a schedule for the next few months. That will help. We've been put in for the RMH and they usually don't have problems with that. Now it's just getting things ready to take for 2 wks, and getting things ready for home for 2 wks.
Thursday, May 1, 2003 9:00 PM CDT
Well we made it home. We stayed in Ann Arbor last night because Shane had a rash on his chest from his broviac, so we went into the hospital this morning to get something for it. His tests went better this time then in Jan. Things were running more on schedule this time. The weather was much better too. On Tues. we finally ventured out. Nothing is explained there or labled as far as the subway or bus systems, or even buildings or land marks. I think they just assume you should know. We came out of the hospital when we were done for the afternoon and just decided to start walking. Shane didn't want to take the subway. I thought we could be adventurous and just get on one and see where it would take us. We were going to try and find Central Park, St. Patrick's, Times Square anything. We walked 40+ blocks west and came upon the United Nations bldg. A few blocks past that you could see the top of the Empire State bldg. By then it was hot and we were getting tired so we started back by a different route. Every intersection we came to you would look both ways before you step out. No one pays attention to traffic lights there. We came to 33rd(?)and Park Ave, looked right, that was clear, looked left and there was this HUGE bldg. going across the street. There was a place through the middle of it to drive through. We thought it might be Grand Central Station, but by then we were to tired to walk the one more block to find out. A little farther down the road they had a section blocked off because they were taping "Sex in the City". Didn't stick around for that either. Once we got back to the RMH (Ronald McDonald House) we saw on a map that Central Park is only 5 blocks to the left of our front door. Then right there also is St. Patricks, Radio City Music Hall, and a few other things. Crazy!! I told him we would venture out again when we go back for the treatment. We did get our starting date while we were there. It's going to be Mon, May 12th. One week later then I had hoped but that's okay. He's a little upset because he knows he's going to miss playing at graduation now. I'm just glad we finally have a date.
Sunday, April 26, 9:00 p.m. CDT
Shane's birthday was yesterday. Happy 17th!!! He sure has come a long way from the beginning of all of this. We had an early birthday party (noonish) because Shane and I had to leave for the airport by 5:00. He's not the best at helping to get things together to go away anywhere. He's good at letting you know what you've forgotten though once you're on the way. This time going to NY was a little more chaotic. When we were just past Flint, (already running 45 min later then I wanted) Adam called to say we left the bag with all the shampoo, tooth brushes, brushes, blow dryer..... at home. NICE!! When we got to the airport I realized that I didn't bring any coat, sweatshirt or anything long sleeve for Shane. The hospital is 5 blocks from the Ronald McDonald House, when it's cold it seems like 10. So, I ended up buying him a sweatshirt there because our flight didn't land in NY until 10:30 and I wasn't sure what would be open. We made it to the RMH around midnight. One thing about that city, you can order pizza almost anytime of day and they deliver by bike.
Tuesday, April 22, 2003 6:56 AM CDT
The broviac is in. He got it done today instead of yesterday. His platelets weren't as high as they wanted them to be so he got 1 unit yesterday, then another one this morning. Yesterday he got 2 units of red cells also so he should be all pumped up now. He needed an ultra sound done before they could do the surgery. Between that & getting blood, he was running late. I sent him on his way so they could start the height, weight, and everything else they do before, while I stayed behind to get the report from the ultra sound. When I got to surgery I waited out in the waiting area for him to come out. After awhile I peeked in because I thought he was just visisting with Nurse Kathy. He wasn't there, and had'nt been there yet. She laughed about it and we took off looking for him. 20 min and 1 mile later we found him in Nuclear Medicine visiting with the tech that he hasn't seen in a few months. What a crazy day. His blood counts they took before we left clinic came back with his platelets at 75,000. They ran a copy for me and highlighted it. We're thinking of framing it since we haven't seen that number (it's only temporary) in a couple of years. That's a good joke down there.
Thursday, April 17, 2003 8:56 AM CDT
This has been a different type of week. Shane's leg started hurting Monday morning, so I told him he could stay home and to keep off of it for the day. He happily said yes. It was alittle better when I got home from school and Sarah came over later and it was a lot better by then. By that night he was running (really) around chasing Adam, and goofing around. Tues he got up, it was fine, and went to school. Tues night it started hurting again and by the time he went to bed he was back on the crutches. He stayed home Wed & today mostly because of his leg (thigh area) hurting. Last night though before he went to bed he sounded like he was starting a good head cold. His throat was starting to hurt and he was running a low fever. We've had some bug in our house it seems like for months now that we just keep passing around to each other. I got a hold of his Dr at U of M and he called something in for him. He has an appointment on Mon to get his broviac put in. Hopefully that will make things alittle easier as far as blood draws, transfusions and anything else he needs.
Sunday, April 13, 2003 9:39 PM CDT
Shane's chemo was last week and it went well. He sure has missed a lot of school this year. He did get back on Wed. though in time for the last 2 hours. We have appointments for his tests in New York on the 28th, 29th, & 30th of April. His birthday is the 26th, so we'll leave the day after. He has decided to get a broviac (central line) put back in. He's been doing all of his chemos and transfusions through an I.V. that they start each day we go (he doesn't like to leave them in overnight). After the tests in NY, I'm told the 3F8/Glucan treatment can start in 1-2 wks. Then we'll be there 2 weeks, home 2 weeks, there 2 and so on, up until 4 treatments (unless there is progression, then he's taken off). We're hoping to start the week after tests. That way if he's feeling okay through this, one of his "off" weeks will be when his band concert is. I was informed by him that he has "NEVER" missed a concert yet. I hope it works out for him. If we do get on that schedule we're hoping for though, he'll miss the last 2 weeks of school, but he would be back for graduation (not his but another important day to him). With us now going to school until the 17th, he would be back for those final 2 days of school also. We really shouldn't be making any sort of plans as far as all of this goes, that's usually bad luck. We really don't have any control over when the whole schedule will start, and once it does we're locked in.
Saturday April 5, 2003 9:26 PM CDT
It's Adam's birthday, Happy Birthday Adam!! Since the last entry Shane got some red cells and platelets. I'm kind of glad because he was feeling great for the Band Day at WMU yesterday. It was a little disappointing though because, of all things, the weather was horrible so the rest of the band couldn't go. School was called off so they had to stay back. Shane got a notice at the end of last week saying he had been picked to play in the "All Star Band". It's made up of kids from all different high schools around Michigan and they have a guest director, plus the director from WMU direct the 2 songs they will play. He was sooooo excited about it. We left at 4:30, Friday morning, spent all day there listening to different concerts from different bands. The band that Shane played in had a couple of practices during the day for their concert at 7:30. They sounded great!! There was over 100 of them and they played so well together. The weather of course turned bad on the way home, again. We finally made it around 2:30. What a long day.
Wednesday 3/19/03 9:17 PM CDT
Shane is back to school and his arm is back to normal. He wore a sling for a couple of days to baby it and that seems to have helped a lot. He had an x-ray done on it to make sure there wasn't a fracture in it (I was told that happens sometimes if they have disease in that area), but that came back okay. His next big event that he wants to be able to go to is the Band Day at Western Michigan on 4/4. That will be right before his next chemo so that's usually not the best time to plan for anything, here's crossing our fingers, again!!
Monday 3/17/03 9:04 PM CDT
Well, he made it to the parade and he did great. The weather was good, almost too good. It ended up being 70, so with their uniforms on the kids were really hot. Their band was more to the front of the parade this year so that was a plus. I think he walked backwards for the majority of the 3 miles. They played quite a bit through the whole thing so today his arm and shoulder are really bothering him from all of the directing. We had a "fog" day today, which turned into a "sunny" day by 10:00, so it was a nice day off.
Sunday, March 9, 2003 9:10 AM CST
Well, band festival is over and it was pretty disappointing for them. After all of their before school, after school and night time practices the last few weeks, they ended up getting a 2. They really sounded better then that performing. Their 1st march was excellent. The sight reading judge (who had given them a 1), when he found out what their final score was said, "How the h*ll can you get a 1 in sight reading, and a 2 for your performance." That made them feel a little better.
Shane is due for chemo tomorrow, Tues & Wed, just in time. His arm and knee started bothering him on Fri, then he started with a nasty sore throat Fri also, which didn't help. We did make it through this last chemo regiment without any transfusions, that's a first in a long time. His next important thing he wants to feel good for is the St. Patrick's Day Parade on 3/16. It's 3 miles of marching and I told him if his legs were bothering him then maybe someone could push him in a wheel chair in the front of the band, or we could get a 4 Wheeler that he could ride on the back and he could direct that way. Well of course that was out of the question, his quote as usual, "I'll be fine, don't worry." Cross your fingers everyone.
Sunday, February 23, 2003 11:38 PM CST
Shane has been feeling pretty good. He and Sarah went to Sadie's last Sat. (2/15), and from the sounds of it had a good time. He also managed to finish his "Mouse Trap" (he had a partner that worked on it too), in time for the Science Olympiad competition yesterday. They ran through it once after they got there to make sure everything was working, and it was, but when it was time to compete, or show it, almost everything that could go wrong, did. Needless to say they didn't place, but he had a good time anyhow. Their school placed fourth over-all, one up from last year, so that made the day better. Now he starts working on getting ready for their band festival competition on 3/8.
Wednesday, February 19, 2003
Shane finished his 3rd day of chemo. It went quite easy and quickly. So quickly even that he made it back to school for last hour (and he thought he would get the whole day off).
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