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The purpose of this site is to keep people updated on Beth and her progress since her surgery on December
19, 2002 for a medulloblastoma brain tumor. We are so thankful to have so much support from family and friends and hope this will keep you informed. This page will also give you an opportunity to send email messages directly to Beth by clicking the link and the bottom of this page.
As of 12-19-02, Beth has undergone brain surgery to remove her malignant tumor. The followup MRI scan
shows that the doctor at the Children's Hospital of Michigan (in Detroit) removed all of the tumor! There have been lots of doctors and nurses in and out of her room since the beginning and especially after surgery. There is a drainage tube called an EVD installed in the top of Beth's head to minimize the pressure in her brain as it heals. This tube drains the cerebrospinal fluid until her brain can handle it all again with no help. Should her brain not be able to handle the dispersement of this fluid...she will require an internal shunt. We are praying this is not necessary. Beth has been a trooper through all of this and has been heavily sedated for the first week after surgery. It took awhile (7 days) for her to eat anything...but now she has returned to her old "chow hound" ways :)
Today 12-30-02, Beth had to endure a series of "staging" tests. These tests determine the grade of the
tumor she had and provide a guide for followup chemotherapy and radiation treatments. These tests included a lumbar puncture, commonly referred to as a spinal tap, to extract and examine her spinal fluid for the presence of tumor cells. Next, a bone marrow aspiration was performed by taking a "plug" of bone from her pelvis. The doctors also examine the marrow for the presence of tumor cells. Lastly, a "medi-port" was put into Beth's chest. This enables easy and quick access for IV hookup and also chemotherapy. Basically, a small port was put under the skin in Beth's chest. One end is inside a major artery and the other is a port just below the skin. A needle is poked through the skin and into the port to administer fluids of any sort. Beth just got back from these tests and she is NOT happy. Fortunately, these are the last tests that have to be done.....so all there is to do now is heal up, feel better and go home!!! We do not yet know when we will receive the results of the tests or when Beth can go home.
We have a long road ahead of us. Radiation will begin in a couple of weeks. It will overlap with chemotherapy
towards the tail end....so as you can imagine.....Beth is not going to feel very well. I'm told radiation will last for six weeks......it goes everyday, Monday through Friday....with a break on Saturday and Sunday. Yep....that means a daily drive to Detroit! Chemotherapy will also be weekly. After a couple of months it will be three weeks on and then three weeks off. Once every few weeks a two or three day hospital stay will be required. Chemo will last for approximately 18 months.
This page will be updated with information as it is received......so keep checking back. You can send Beth an
email by clicking the link below....I know she would love a little note from you. Beth is very tired and will be for awhile........so.........we ask that everyone send an email and that you dont stop by unannounced as she may not be up for a visit. Thanks for understanding!
Just got the news today (New Years Eve). All of the Bethany's tests (spinal tap, bone marrow and spinal MRI)
came back officially NEGATIVE on the pathology report. This is the news we were praying for. Her little body is cancer free. Radiation and chemotherapy will be employed to make sure! Bethany is one sore little puppy today...complaining most about the medi-port installation. Keep us in your prayers....we have a long road ahead of us with the followup treatments.
To all of you who have helped us in so many different ways...thank you from the bottoms of our hearts. You
know who you are. Many of you have expressed concern about our financial wellbeing....not to worry thanks to our understanding and generous employers / coworkers. Both of our places of work value the concept of "family first", for which we are eternally grateful. To all the folks at White Lake Twp. Police Department (Mike's work) and Bill Wint / staff at Wint Funeral Home (Jenni's work) thank you so much for all of your support. You have given us the greatest gift of allowing us to be with Bethany during this terrible ordeal. We will never be able to find a way to repay you. You are all true friends. Thank you.
Today was another step taken towards going home. The doctor removed the EVD (fluid drain) from
Bethany's head. She has been handling all the cerebrospinal fluid herself for almost two days already........it appears that NO shunt will be necessary. We are very happy about that.....because a shunt is a lifetime thing once it is in. Bethany is getting back to her old self......last night she got the "artsie craftsie" bug and broke out the markers. She made four pictures.....one of which was a rainbow (symbol of hope). On it she wrote "I was scared. But now I am not. Because I feel strong!" She's baaack!!! Thank you all for understanding that she still does not want visitors.....we ask her often and are not sure why....but we are honoring her wish.
Were home!!!! The doctor discharged Bethany on Friday 1-3-02. We had our Christmas that evening when
we got home. Man............is it nice to be home. Beth has been doing pretty well. Had a little scare today though.......Beth had a pretty good headache with some vomiting. So..............you guessed it.............the doctors told us to pack it up and head back to the hospital for some tests. The CT scan showed that everything looked fine. We were very relieved that a shunt was not ordered. We met with the chemo people and got everything in order. The side effects of all these treatments are VERY scary. Beth is officially in the "low risk" catagory for which we are so thankful. The doctor sent us home for the night to see how things go. We are still not out of the woods on the shunt.....which still may be necessary............only time will tell. Included a couple of pictures this time so those of you across the country who have sent well wishes can put a face with the name!
On 10-14-03 Bethany had been having bad headaches and nausia all day. The doctor told us to bring her in
for a CT scan on 1-15 @ 6 A.M. It got so bad that we loaded up at 3 A.M. and headed to the hospital in Detroit. A CT scan revealed that Bethany had hydrocephalus (fluid building in the brain). The doctor recommended immediate surgery to relieve the pressure. We though a shunt was certain but he ended up doing a ventriculostomy. Basically...a ventricle in the brain was not working so it was surgically opened from "the floor of the ventricle". The doctor said that scar tissue formed as a result of healing from the first surgery which ended up causing the blockage. Now the fluid can get where it needs to go to be properly absorbed by her brain. We just have to wait and see it her brain will do this. If not.....it's shunt time. We are hoping this will do the trick though. Beth is resting comfortably with morphine but complains of head pain when it begins to wear off. She is still experiencing major nausea from the anesthesia given at the time of surgery. Bethany is scheduled for an MRI scan at 5:45 P.M. today to ensure that everything is working as it should in her brain. Awwww.....I'm updating this site while sitting next to Bethany's hospital bed. I just got an unprompted "I love you daddy" right out of the blue :) I will try to update reference the MRI as soon as possible.
1-19-03 - The MRI looked good according to the doctor. Beth had a much better day today. Her eyes, which
in the past got almost black and raccoonish from the pressure, look much better today. Beth has felt better today as well. We took a couple of strolls around the hall in her wheel chair (thanks so much for that Chuck!) and even down to the cafeteria where she had some soup. It always takes about three days for the nausea caused by anesthesia to subside. The doctor says that he will order a CT scan in the morning and it is favorable and if she continues to do well then he may discharge sometime tomorrow. WooHoo!!!!
Jen and I are very anxious to get back to work. It will be the only part of our lives for awhile that will be as
they were before all of this. That will be good for both of us. As long as no major snafu happens...we should both be back to work sometime this week. A big shout out to Chief Stephens for approving duty sweaters and dickies! |
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1-26-03
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1-26-03
We have been overwhelmed by all the love and support of everyone. This week both Mike and I went
back to work. It has been good for everyone, including Bethany & Mikey. Mike and I both work for and with incredible people / friends. Helping others is therapeutic for both of us. Beth has been unusually tired, quiet and withdrawn, rarely accepting phone calls and still not wanting visitors. We don't understand why, but have come to realize that she needs to do whatever helps her cope. She does receive a lot of letters, cards and gifts which always bring a big smile! She has been getting on the computer more often to read all the emails you all have been sending her. Please continue to remember her in the months to come. She has 18 months of treatments ahead of her and will really need the support then too. Right now she is mostly tired. She is frustrated with her vision. Beth wears an eye patch over one eye because if she doesn't then she sees double. Monday she starts radiation daily and Wednesday she starts Chemo once a week. In one sense we are dreading the treatments and all the scary side effects and in another sense we just want to start them so they can be over sooner. We really don't have a choice........do we? Beth and I met some kids her age at a radiation appointment last week and it was so SAD. They were so sickly and down. It was depressing for both of us. But we are trying to be positive....it could be so much worse. But sometimes the "why's" sneak in and pull you down. There are so many people on this earth (and beyond, I think!) praying for our Bethy girl....that really helps. Please continue. I pray (more like PLEAD) with the Lord constantly to help her through treatments, to not let it ever recur and to give us strength as parents. Please make that part of your prayers as well. Beth is excited for Monday because after radiation her 4th grade teacher will be coming to our house for a weekly tutoring session. We are so happy Mrs. McDowell is willing to help Beth in this way. School has always been Beth's greatest love, so keeping up with her class will be so important for her self confidence. We are working on getting a recent picture of her on the website. She has lost a lot of weight, but when I see her up walking around, I have to be so thankful because she had two brain surgeries within the last month and she's up and about! That is incredible, isn't it?! Thank you for caring enough to read this website! - Jenni |
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1-28-03 - Well...Beth had her first radiation treatment today. She was more afraid of the unknown
than she was of the treatment. She had a hard time because the mask they made which securely holds the head to the face cradle was to small. So tight in fact that they re-did it yesterday because the first one was almost cutting into her skin. The radiation treatment went fine. I couldn't believe how fast the treatment was. Just a few minutes and BAM....we were out the door. Chemo starts tomorrow......her first dose of vincristine. We have lots of awesome anti-nausea drugs so I'm hoping the sickness part will stay at a minimum. We do have some great news though! Beth has been seeing double at anything beyond a three foot range. Yesterday we were driving and she lifted her eye patch to itch her eye and said "Hey dad.....I dont see double anymore!". We both laughed and cried at the same time. A little relief when we really needed it. I will post again tomorrow to update you all reference the chemo. Keep praying! |
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1-30-03 - Beth had her first chemotherapy treatment yesterday and her third radiation treatment today.
The chemo consisted of a single injection of a chemical called vincristine. Jen takes Beth on Wednesdays and therefore gets the lengthy task of the weekly chemo. There are three words to describe chemo.....wait, wait and wait! First you have to wait to have your vitals taken. After that you have to wait to have blood drawn. Next, you have to wait for the blood to be analyzed. Then you have to wait for the doctor to write the prescription for the chemo after which you wait for the pharmacy to fill it. Finally, with Beths medi-port having been accessed during all this, the chemo arrives in a little syringe and ....Ta Da....the nurse injects it in only a few seconds and off you go! Beth & Jenni are going to learn patience sooner or later!! We have met a couple other kids battling the same circumstances...it's heartbreaking but encouraging to see other people coping with this awful thing called childhood cancer, too. Beth is starting to get tired mid-day and naps....which is out of the norm for her. She hasn't become sick at all but does complain of heartburn at night while lying in bed. Jenni has been cooking alot lately.......heh heh. Treatments are off to an encouraging start with a very long road ahead. We have been receiving tons of emails, cards, meals and HUGS. Thank you all so much. Many of the cards we receive, we can't even figure out how we know the senders. Friends of friends telling friends to pray for Bethany...it's awesome! Beth feels like a celebrity every time we open the mailbox. It's really hard for all of us to keep looking forward and not back. Your heart wants so bad for it to be the way it was before Dec. 17, but we know reality-we have this to face our entire lifetimes. Keep praying for us all. |
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2-3-03 - Well.......the first week of radiation and first chemo treatment has come and gone. So far so
good. Beth has not been sick at all....only tired. She has a great appetite! This may be because of the steroid she is on. Beth only has a couple more days on it until she is through...so we are thinking this may affect the appetite. Beth has gained most of the weight back that she lost post-surgery during recovery. Mrs. McDowell, Beth's teacher, came to the house today for Bethany's home schooling. She said Beth is doing fantastic with her work (is that any suprise?) and that she worked Beth hard today for about two hours. We started the second week of radiation today and the doctor says to expect hair loss to begin towards the end of this week or the beginning of the next week. I guess we will deal with that when it happens. Beth is aware of it and will be ok.....however difficult it may be at first. We just have to remember that its the cure making it happen....not the disease! It's much easier to handle if you think about it like that....at least it is for me. Note there are a couple of new pictures at the bottom of this page. Well.......things are pretty standard and uneventful so I'm running out of things to say. Stay tuned! |
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2-9-03 - Beth made it through her second week of radiation and chemo with flying colors. We are
learning the timing of the quirky side effects such as sore throat and stomach pain. The day of chemo and the two days after are when she has most side effects and fatigue. It's still a fight to get her to take a mid-day nap. A nice back rub with lotion usually does the trick when I can find a time when Mikey is not being a typical three year old and demanding my attention. Beth's hair has slowly started to come out. She noticed a bit in the bathtub drain last night and also on her pillow. I told Beth that I would take her if she wanted to get her shaved in lieu of endouring the gradual, patchy hair loss. It's what I would do. Jenni brought it to my attention that it might be nice for Beth to have control over at least one aspect of this ordeal. It hit me like a smack in the face! She's right. My idea of control would be taking my hair before something else has a chance to....but that's not necessarily what Bethany's idea of it is. Oh man......it'll drive ya crazy if you think about the psychology of it for an extended period. The MRI office called yesterday. They are already booking Beth's post radiation MRI scan. Dont worry.....totally routine (it was my first question). Beth has four more weeks of radiation and then only chemo for the next year or so. I dont think I ever mentioned which regimen she is on for chemo.....its vincristine, ccnu and cisplat. Keep the prayers and thoughts coming, it's the glue that's holding everything together! |
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Beth wrote a short letter....or as I prefer to call it...a statment of facts. So here ya go!
"I don't miss the nurses coming in every hour....I don't miss the cafeteria food either. It's so good to be
eating regular food!! But I do miss their speghetti! That was sooooooo good! What I don't miss the most is the hotdogs and pizza from the cafeteria."
As you can probably tell....she thought alot about food when she wrote this. She was on a steroid called
Decadron and it really peaked her appetite. Now that she is off the steroid there has been a marked decrease reference the amount of food she eats. While on the steroid she gained back all of the weight she lost after surgery......which was about 10 pounds. Jen and I were glad she was packing it in....getting strong and ready for radiation and chemo! I am hearing some complaints that I dont update this page often enough. Well......getting to bed at 1 A.M. and then getting up early to drive to Detroit everyday takes its toll.....so please be patient with me....I'm tired ;) |
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We apologize for not updating this sooner. We have been really struggling getting through day to day. We are
finally half way through radiation- the last day of radiation is march 11th, so we are really counting down the days. It is overwhelming for Beth to even look ahead a month. She has been feeling pretty rotten-physically and emotionally. She has been through three chemo treatments-side effects being nausea, heartburn, sore throat and of course, hair loss. As most of you know, last week, our wonderful friends from White Lake Police and Groveland Fire Dept had a get together where they shaved their heads for Beth. It was the same day she had gotten her head shaved, so it was a really emotional day for all of us. She now looks the part. It ended up being a lot bigger than we thought-channel 7 news did a nice story and the Oakland Press did a really nice write up, too. Thank you to all of our friends who were willing to put their vanity aside for Beth. She was quietly taking it all in-didn't say much during the "shave off"-we got a couple smiles out of her. In the car she quietly said : 'that was really nice of all of them to do that for me." She's uncomfortable with all the extra attention and just wants "things to be the way they were". Don't we all. She also made it to her class valentine party. All the kids, teachers, parents were super. She had a bad stomach ache, but made it through the whole party. They all made her a beautiful personalized quilt-she loves it. Her bus driver, another wonderful person, made a sign on the side of the school bus "We love you Beth" and Beth saw it drive by the house. Ms. Leah, the bus driver, even took pictures of Beth's "bus family" and the sign on the bus and gave it to Beth at the valentine party. It was a great day. There is truth in the "good days/bad days". Bad days are awful. She doesn't want to live…she says she's sick of fighting…she's mad at us…unconsolable…its awful and we feel helpless. She hardly smiles at all. Just when were feeling totally hopeless, she'll look at you with those beautiful green eyes and tell you quietly she loves you. So far there have not been many good days…it's the little things that make our day, like her eating a whole cookie or sharing a bath with Mikey peacefully. Its so hard for us to keep positive ourselves, let alone help her keep upbeat. Mrs. McDowell, her 4th grade teacher, is coming once a week and that is one of the few times we see the upbeat side of Beth we miss the most. Beth really looks forward to seeing her teacher. Please keep praying for us to be supportive helpful parents and for Beth's wellbeing. Please pray that the cancer will not recur. We are becoming big believers in the power of prayer…thanks to all of you for your love and support.-Jenni |
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We apologize for not updating this
sooner. We have been really struggling getting through day to day. We are finally half way through radiation- the last day of radiation is march 11th, so we are really counting down the days. It is overwhelming for Beth to even look ahead a month. She has been feeling pretty rotten-physically and emotionally. She has been through three chemo treatments-side effects being nausea, heartburn, sore throat and of course, hair loss. As most of you know, last week, our wonderful friends from White Lake Police and Groveland Fire Dept had a get together where they shaved their heads for Beth. It was the same day she had gotten her head shaved, so it was a really emotional day for all of us. She now looks the part. It ended up being a lot bigger than we thought-channel 7 news did a nice story and the Oakland Press did a really nice write up, too. Thank you to all of our friends who were willing to put their vanity aside for Beth. She was quietly taking it all in- didn't say much during the "shave off"-we got a couple smiles out of her. In the car she quietly said : 'that was really nice of all of them to do that for me." She's uncomfortable with all the extra attention and just wants "things to be the way they were". Don't we all. She also made it to her class valentine party. All the kids, teachers, parents were super. She had a bad stomach ache, but made it through the whole party. They all made her a beautiful personalized quilt-she loves it. Her bus driver, another wonderful person, made a sign on the side of the school bus "We love you Beth" and Beth saw it drive by the house. Ms. Leah, the bus driver, even took pictures of Beth's "bus family" and the sign on the bus and gave it to Beth at the valentine party. It was a great day. There is truth in the "good days/bad days". Bad days are awful. She doesn't want to live…she says she's sick of fighting…she's mad at us…unconsolable…its awful and we feel helpless. She hardly smiles at all. Just when were feeling totally hopeless, she'll look at you with those beautiful green eyes and tell you quietly she loves you. So far there have not been many good days…it's the little things that make our day, like her eating a whole cookie or sharing a bath with Mikey peacefully. Its so hard for us to keep positive ourselves, let alone help her keep upbeat. Mrs. McDowell, her 4th grade teacher, is coming once a week and that is one of the few times we see the upbeat side of Beth we miss the most. Beth really looks forward to seeing her teacher. Please keep praying for us to be supportive helpful parents and for Beth's wellbeing. Please pray that the cancer will not recur. We are becoming big believers in the power of prayer…thanks to all of you for your love and support.-Jenni |