Journal History

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Saturday, August 28, 2010 6:37 PM CDT

Hello friends.

An update after almost a year.

It's been three years, since Maggie passed, but I know that for myself, and so many people, she affects us every day.

Around this time of year, I spend alot of time remembering the path we all took while helping her fight Ewing's. I think of her every day, but at this time of year sometimes I wonder what our lives would have been like without that journey, or if she hadn't relapsed. This is not something I usually do, because it is so futile. But to think of her getting ready for her senior year of high school seems unreal.

Enough of all that. On to the update. Betsy is starting her clinicals for her nursing degree at Mount Mary College/Columbia College of Nursing. She had an outstanding academic year this last year at Mount Mary. Two more years until she graduates with a Bachelor's in Nursing. Full time school with a part time job at the Cheesecake Factory keeps her very busy. We see each other at least every week and do movies, meals out and at home, and some shopping.

Tuttie has continued to enjoy her life at Eastcastle Place on Milwaukee's East side. Her lung disease continues to make itself known. She is wearing oxygen full time.

Phil and Paul are on their way home after a summer at Manitou Lodge. Phil had some major surgery this spring at Froedert Hospital. We managed to feel Maggie's spirit through a trying time, and she continued to inspire us. I quickly fell into my role in transportation and logistics.

I am continuing to work for Columbia-St. Mary's at the Urgent Care at River Woods. I learn lots every day, get the cerebral challenge I need, and have great co-workers. I also keep in contact with my hosptial co-workers, and attended my 35th high school reunion last fall. The summer has brought lots of manual labor for me, as I have been re-landscaping my back yard. I have a tiny lot, but it is still a lot of work.

I also have had weekend visits from two of Maggie's closest camp friends. It was good for all of us. Watson, the wonder cat, even ventured out to meet Emily. (There was a thunder storm and he was scared.)

Thanks for checking in on us.

Cindy

Sunday, July 26, 2009 9:02 PM CDT

Hi all,

Yesterday, I (with some help from friends) held a lemondae stand for Alex's Lemonade Stand. This is a foundation to fight childhood cancer started by a young warrior a few years ago. It is now a large foundation dedicated to fighting the beast. I have hoped for many years to try and give back to the pediatric oncology community that helped Maggie, myself, and the rest of the family during her fight. I have wanted to volunteer at her camp, but have been unable to make that step emotionally. So this is my beginning step on that journey. It was a huge success, as it was held as part of our block rummage sale. I hope to do this annually.

Friday was Betsy's 26th birthday. She is transferring schools to Mount Mary College this fall, where she has been accepted into the nursing program. She has three years of school left, and will have her Bachelor's of Science in Nursing when she is finished. I am so proud of her.

I have been busy with work and friends. Tuttie has had some challenges concerning the progression of emphysema. She draws on Maggie's strength and resillience as examples in courage.

Phil and Paul are in Canada, at the fishing camp, where they have had a very cold summer.

I see Chris and DeAnn, and am proud to report that DeAnn has finished her RN degree and passed her nursing boards. So in a few years we will have 3 RN's in the family.

August 18th will mark the second anniversary of Maqgie's passing. She is with me every moment of every day.

Thanks for listening.
Cindy

Saturday, March 7, 2009 8:03 PM CST

We've had a long, cold, snowy winter. Betsy and I celebrated this in January by taking a vacation, our first since our trip to Hawaii with Make-A-Wish 5 years ago. We went to Mexico for a week and had lots of sun and fun.

I continue to be so sure I made a good decison with the job change last summer. Urgent care is interesting, challenging and quick paced. I am learning lots and have great co-workers.

Last week, Betsy and I went to the Wisconsin Humane Society and I adopted a 3 year old cat. We have named him Winston. He is very sweet. When Maggie and I moved in to this house, she wanted to make the back of her closet into a playground for a cat, called "Cat Land". She always had such a great sense of imagination and fun. I know she's glad that I have a new feline companion.

The 31st of this month will be Maggie's 16th birthday. I am overwhelmed sometimes at the size of the hole in my heart. It's like a cut that starts to heal, but when it gets roughed up it seems to hurt even more than in the beginning. What I know the most is that I am so glad to have each and every memory of her that I do. The good, the bad, and the sad. They are all intertwined.

So, light a candle for Mags on the 31st, and know she is with all of us every day.

Peace,
Cindy

Saturday, October 25, 2008 1:38 PM CDT

Okay, it's been so long since I've updated that I alomost couldn't remember the password. And a few hints in guestbook.

It has been a delightful fall here. Betsy and I have gone for drives the last couple of weekends to look at the trees. We know Maggie is groaning at us. Last weekend we went up to the shack and had a beautiful day with Paul's family. Nick and Clay, his nephews bring alot of joy to our lives. Clay is just a few weeks younger than Maggie. I get to sort of live the life of a 15 year old vicariously through him.

My new job feels like the right move for me. I find it interesting, challenging and fun. And my commute is under five minutes.

I traded in Humphrey, the car that was the conveyance for Maggie and I for most of her treatment. Cleaning it out was sad. I found lots of things from CHW; parking passes, masks Mags wore after the transplant, wrist bands. I moved some stuff to the new car, like a guardian angel pin Maggie had put on one of the visors.

Betsy is very busy with school and work. Tuttie seems to be the busiest of us all. Tuttie, Phil and I had lunch together on Thursday. Phil is enjoying his retirement.

Maggie is with me every moment of every day. I will open a notebook and find notes she wrote me years ago. She touched the lives of so many in her 14 years with us.

Peace
Cindy and Team Maggie

Friday, August 22, 2008 10:23 PM CDT

Monday the 18th was the one year anniversary of Maggie's death. Betsy and I spent the day together. We went out to the cemetary, and saw the marker that has been installed. We think Maggie likes it, because it is just different from the rest of the family that is there, but just similar enough, too. She is buried with my dad, my brother (who died when he was 13) and my stepfather. She would like to be surrounded by boys. We left some beautiful flowers there, and when we drove off, we could see them on the top of the small hill in a ray of sunshine. We spent the rest of the day shopping and going out to eat....more Maggie approved activities.

I received many messages from friends lending their support during this time of our lives. We appreciate all of them, and all of you.

Maggie's best camp buddy,Emily turned 16 on the 18th. I haven't had a warning yet to avoid the roads in Naperville.

Work continues to go well. I helped hostess a baby shower for a friend from the ICU last weekend. It was delightful to spend a day with the gang.

School starts this week for Betsy. She is taking a very heavy courseload. Macroeconomics, microbiology and chemistry.

A friend that Maggie and I made at CHW, Jessie, who also has Ewing's Sarcoma, has relapsed. I didn't find out until recently. So please add her to your prayers. She is a delightful 8 year old girl from Beaver Dam. She will be having a stem cell transplant at CHW.

Thanks for your continued support
Cindy and Team Maggie

Thursday, July 24, 2008 12:50 AM CDT

Happy Birthday Betsy.

Today is Betsy's 25th birthday. Recently, I think because we are nearing the first anniversary of Maggie's passing, with every day I remember where we were last year. This was especially true with the beginning of Maggie's camp on the 5th of July. I know she was present in memory and spirit with all of her buddies. She loved camp so much. It was so important for her to spend 2 weeks there last summer even though she was in alot of pain. Camp gave her strength and wisdom, but most importantly, surrounded her with love.

Phil and Paul are busy in Canada. Before they had customers this summer, they did lots of repairs (like roofing cabins and putting in a new dock). I get exhausted just hearing about it.

Betsy is taking the summer off from school. She is working at the Cheesecake Factory at Bayshore.

Tuttie had cousins from Ohio come to visit last week. Her cousin Bill and she look so much alike it's sort of spooky. People have always told me that both of my daughters look like me.

Chris was over yesterday to fix some plaster for me, and do a long list of repairs I don't feel qualified to do. He has a handyman business. We spent some time looking at this year's yearbook from camp (it had last summer's pictures in it) and reminiscing about Maggie.

I have been keeping out of trouble (most of the time) by working in the house and the garden. After a lot of contemplation, I transfered jobs with in the hospital system I work for. I had worked in the ICU for 17 years. Now I am working in an Urgent Care center. It was very diffucult to leave the co-workers who have been so supportive to me over the last number of years. But I needed a change. After two weeks on the job (definetly still in the honeymoon phase), I think this was a really good move for me. I plan to pick up some extra shifts in the ICU when I am done orienting.

We are going to one of our favorite restaurants tonight to celebrate Betsy's birthday.

Please send some prayers and karma to Maryah in MN. She has an important MD visit today

Cindy and Team Maggie

Friday, June 20, 2008 11:28 AM CDT

Sometimes when I load pictures on the computer, and use a different program than I am used to, it baffles me to get them on the Caring Bridge Site. This morning, I sat down and made myself figure it out.

The beginning of summer, after a week of torrential rain, has been delightful. I feel Maggie's presence with me all of the time. I have added some things in the garden for her. A small garden gnome, a bunny plaque, and lots of her favorite flowers. Betsy and I went to the cemetary yesterday. It is peaceful and calm there, but I feel her more at home than anywhere else.

The ceremony at the Middle School was very touching. Some students, teachers, and I spoke about how fitting it was to combine school and art for Mags. They had Maggie-appropriate snacks. All of the family came. One of Maggie's camp buddies and her mom stopped in from Cedarburg. I told her to play some pranks at camp in Maggie's honor. Camp starts the Saturday after the 4th of July. I am sure that Maggie wants all of her camp family to have lots of fun for her.

Chill out....
Cindy and Team Maggie

June 23.....so I finally could get my imaging software to resize the picture. Thanks for putting up with my technical problems.
Cindy

Friday, May 30, 2008 8:31 PM CDT

Spring finally seems to be here. I have been putting lots of things in the garden the last few weeks. And I have been putting lots of Maggie touches out there too. A turtle planter, some of her favorite flowers, a couple of bunny plaques. And last night a beautiful peacock figure showed up on the front porch. Most of the perenials I put in last fall made it through our rough winter.

The yearly report from camp came this last week. It reminded me of the generosity of so many in her honor.

On Wednesday, June 4th, at 3:15, a mural painted in honor of Maggie will be dedicated at Whitefish Bay Middle School in the Media Center. I invite anyone who would like to come. It is so fitting to have art in her memory.

Tomorrow, Betsy and I are going up to the shack for the day to spend with friends and family.

Cindy and Team Maggie

Sunday, April 20, 2008 2:11 PM CDT

I better leave a message before the search parties come out.

Maggie's 15th Birthday, on March 31st, was, as expected, difficult for all of us. She left such a huge void in all of our lives. I know that things will get easier as time passes. Some days are just simply more challenging than others.

So we press on. Betsy is very busy with school and work. Tuttie continues with a huge amount of activities. Phil and Paul are starting to gear up for the summer, and their migration to Manitou Lodge. Phil is continuing with his plan to retire at the end of this school year. I am busy with work, good friends, hobbies and now that it is finally spring, the garden. I am making slow progress in dealing with Maggie's belongings. It gave me great joy recently to give some of her clothes to a friend's daughter.

Cindy and Team Maggie

Monday, March 10, 2008 1:34 PM CDT

A snowy, cold month and a half in our neck of the woods. Maggie surely would have needed those little crutch grippers this winter.

I keep on at work. Some days are better than others, but isn't that how it was before all this crap? Betsy is taking a full course load at MATC and working. She has been staying with me a couple of nights per week to concentrate on her studies (and I think to keep her mom company, but she denies that).

Phil has put in his retirement notice with the Oconomowoc Schools. People keep asking him what he is going to do. Our original plan was that he was going to be the transportation provider and help with Maggie's appointments. Now I think I can find plenty of tasks around this house to do. I have boxes of stuff in the basement that have never been unpacked. (From Sept 2006)

Tuttie was here this morning and helped me clean out a drawer of Maggie's. The hat drawer. When you are bald for most of 5 years you end up with alot of hats and scarves. I am going to make some crazy quilts using some of Maggie's clothes and scarves.

I spent 3 days in Naperville last week, with Nick and Clay, so that Ted(Paul's brother) and Claudia could go on a trip they had planned. I chickened out on seeing Emily. I am trully sorry, sweetie.

Maggie's birthday is the 31st of this month. She will be 15. Please think of her that day, and light a candle in your home for her. Thanks

Cindy and Team Maggie

Monday, January 14, 2008 2:34 PM CST

For over two weeks, on my "to-do" list has been to update the website. Now I can finally cross it off.

The holidays were understandably difficult for all of us. I worked a 12 hour day on both Christmas eve and Christmas day. Betsy went with Chris and DeAnn and her daughters, etc for Christmas day, and then she came and watched a movie with me. Between Christmas and New Years I broke a tooth, which progressed to an abcess and a root canal. I think that was my dental emergency for the year. I worked on New Year's day, also. So after the holidays, I congratulated myself on how well I did, and then fell apart. It doesn't help that it is January in Wisconsin and that the sun likes to hide. I'm doing better, but this has reifnforced to me that I need to deal with things. So sometime this year I will tackle Maggie's room.

Chris, DeAnn and Betsy are in Utah until Thursday. I had a call from Bets on Saturday, and they had been skiing at Alta. She is having a good time with all of her family there. Her grades were excellent last semester, and she is taking a heavier course load this semester. We are all so proud of her.

I am working night shift this month. I can't seem to figure out what I want to do when I grow up. I know I will always be a nurse. My co-workers are very supportive and kind. The work is challenging and rewarding.

Phil and Paul went to Florida for a week over the holidays, and then up to the shack for New Years. They were over to visit yesterday.

Tuttie is busy with her friends, bridge, and life in general. She is having all of us for dinner next Monday to celebrate Phil's bday (jan 23) and hers (feb 3).

Please continue to keep Maryah in Minnesota in your prayers. She has many challenges to face.

GO PACK GO!!!!!!

Cindy

Tuesday, December 18, 2007 6:01 PM CST

Check out the camp website (link at the bottom of the page) and see the Holiday cards they are selling this year. There is one by a artist we all know and love. I got a bunch of the cards last week, along with a note from a counselor from camp. I knew the artwork was Maggie's right away....so distinctive. She is also in the MACC fund calender for 2008, a small beautiful picture and blurb.

I've been busy with work and dealing with all of the snow. We have had over 2 feet of snow this month. Last year, Maggie and I were going to patent little grippers for the bottom of her crutches for the ice and snow. So she is sending us lots of snow to tell me she can run and ski and play in all of it in Heaven.

Family is coming for dinner this Friday night, Phil and Paul go to Florida on Saturday. I am working on Christmas Eve day and Christmas day. Betsy will be with Chris and DeAnn and her girls. Tuttie has plans, too.

Through Caring Bridge, I follow other warriors as they fight Childhood Cancer. I ask for extra prayers for Maryah in Minnesota, who has new hurdles to face. She is in 8th grade, and has an infectious smile. Like someone we know.

Merry Christmas
Cindy and Team Maggie

Thursday, November 29, 2007 7:14 PM CST

We had a very nice Thanksgiving at the Shack. Phil is a great cook. We talked about how Maggie was with us last year, whipping cream with Betsy. After dinner, we had a huge bonfire and we all put letters in to mail to Maggie in heaven. A full moon, snow on the ground, a cold and crisp night. She was there with us.

I decided not to put up the Christmas tree this year. Maggie loved every bit of the ritual of decorating for the holidays, and she and Betsy have lots of ornaments I have given them over the years. I can't bring myself to open the boxes this year. Betsy is understanding of this, and will help me next year.

Betsy is going to Utah with Chris and DeAnn in January for a vacation, to ski and visit with family. She is very excited about her trip. So lets hope for lots of snow out there in January.

Thanks for all the good wishes.
GO PACKERS!!!!
Cindy and Team Maggie

Saturday, November 17, 2007 2:13 PM CST

I just came in from raking leaves. When I've been doing this, I come across beautiful bright red maple leaves from a neighbors tree, a few doors down the street. Maggie loved the leaves from that tree. As a little girl, she would be over visiting Tuttie, and she would go out and collect these and bring them in to share with her. It makes me feel her presence to see them.

Work is going well. I am exhausted (but in a good way) by the end of the day.

We are going up to the shack for Thanksgiving. I know every holiday will be difficult this year. I am glad that I can spend this one with my family. I will be working on Christmas eve and Christmas day.

Thanks for the love and support. I think I will keep the website going until spring. Who knows.

Cindy and Team Maggie

Tuesday, October 23, 2007 2:45 PM CDT

The choir concert last week was wonderful. It is good to see Maggie's classmates, but sometimes it is hard for me to interact with them, too much emotion. Chris, Betsy, Tuttie and I went to the concert. They dedicated the concert to her, and especially the song "You Lift Me Up."

Work is going well. Different kind of busy from when I worked night shift, but I hope it will be better for my sleeping issues and general health. It is great to see my friends at the hospital, and they are all very supportive. At present, I plan on working two 12 hour shifts a week, and maybe going up to three in the future. Still lots of stuff to do around the house. I have lots of Maggie things to take care of, but am successfully putting those off for awhile.

Betsy, Phil, Paul and I went out for dinner last night. We had a great time. Betsy is very busy with work and school, but we manage to get some mother/daughter time in every week. We are all very proud of her commitment to school. She is doing very well. She plans on studying nursing when her prerequisites are out of the way.

I am thinking of closing the site down before the end of the year.

Thanks for checking in
Cindy and Team Maggie

Wednesday, October 10, 2007 10:48 AM CDT

Yeah for the Bay Attitude kids. They raised over $1400.00 for Camp One Step at the car wash. I went early and dropped off some of Maggie's favorite snacks for the kids to eat.

I got a call last night from one of Maggie's friends asking if they could dedicate the WFBHS choir concert to her on Monday night, and the freshmen will do a song in her honor. Of course. Betsy and I already have made plans to go.

Last weekend, Betsy, Peter, and I went up to the shack, Phil's cabin near Manitowoc. It was a glorious fall day, with lots of color and sun. Paul, Ted, Claudia, Nick and Clay were there also. We ate alot, talked alot, sat in the sun, watched the Badgers lose:(, and took some nice walks in the forest. Some of Phil's current and former co-workers had donated a tree in Maggie's memory. It is in the middle of the field in front of the shack, and is a Fall Fiesta Maple. Stupendous.

I start back at work next Monday. I have spent some time the last few weeks getting my paperwork at the hospital up to date. The biggest change will be that I am going to be working 12 hour day shift, after 16 years of 12 hour night shifts. I am trying to get my very worn out brain and body on a regular sleep/wake schedule.

All of Team Maggie is doing their best to move forward. I have checked out this thing where you can have a blog put into a book for a keepsake and I will be doing that with this webpage in the next few months. Thanks, Leigh (and the pancake bunny) for clueing me into this.

Cindy and Team Maggie

Monday, September 24, 2007 8:23 PM CDT

Last fall, a local teenage community service group held a car wash fund raiser for Camp One Step. They are holding it again this year, to raise money for camp, in Maggie's honor.

BAY ATTITUDE CAR WASH
Saturday September 29th
6260 N. Lake Drive
2 to 4 pm

We are all honored that these kids have undertaken this again this year. At this point, the weather forecast for Saturday is for sunny seasonable weather.

I will be returning to work the week of October 15th. I am very nervous to do this, as my co-workers have always been such a support, and I get very emotional when I see them.

Cindy and the rest of Team Maggie

Tuesday, September 18, 2007 7:16 PM CDT

Thanks to everyone for their messages of support. It is hard to accept that it has been a month since Maggie passed away. It is one of those things that seems like ages and yet like yesterday.

We are all trying to get on with our lives. Betsy and DeAnn both have work and school to keep them busy. Uncle Phil has been busy with school and keeping an eye on his sister (me). Tuttie has been a huge help to me. Chris, like myself, has good and difficult days. Everything reminds all of us about our brave warrior.

I took treats out to radiation oncology, HOT clinic, and the HOT unit today from Maggie. Krisp Kreme donuts. She always knew what people liked.

Team Maggie

Friday, September 7, 2007 2:38 PM CDT

People keep telling me to update the page, but I'm somewhat resistant, but will do so, as I don't want search parties sent out.

Things are diffucult for all of us. We are all being very supportive of each other, and remembering how much Maggie loved us all and what a special person she was helps. There are just times when the grief washes over you like a tidal wave and you can't help to succumb.

Chris came over to visit Betsy and I here last evening. Betsy and I had framed some of Maggie's fashion designs for DeAnn, and we sent that home with him. I spent most of yesterday afternoon planting a beautiful perenial garden we had recieved in memory of Maggie. That is not work to me, but therapy. But due to all of the rain we had at the end of August, the mosquitos are very thick and very hungy. They forced me in after awhile.

I did have a birthday earlier this week, and while I will aknowledge the years, I find it hard to be festive. We did go out for a superb dinner and I wore a dress Maggie had picked out for me last summer.

Thanks for checking in on Team Maggie
Cindy

Monday, August 27, 2007 8:45 PM CDT

Our family is overwhelmed by all of the kind thoughts, cards, prayers, flowers and words from all of you.

Visitation at the funeral home was packed. As was the memorial service on Saturday. Uncle Phil spoke with kindness, love and tenderness about Maggie.

All of Chris' siblings and his parents were able to make the trip here for the services. Tons of school friends, my work friends, Chris and DeAnn's friends, community friends and camp friends showed us all what a tremendous impact a very special 14 year old has had on all of our lives. I can't begin to mention the people who came from all over to honor Maggie. Archbisop Dolan came to the funeral home to pay his respects.

Tuttie, Phil, Paul, Betsy, Chris, DeAnn and I thank everyone from the bottom of our hearts. Maggie has made us all better and kinder people by being a part of our lives.

Team Maggie

Tuesday, August 21, 2007 1:45 PM CDT

Visitation at Feerick Funeral home, 2025 E. Capitol Blvd, Shorewood, Wisconsin on Friday August 24th from 4 to 7pm.

Celebration of Life (Memorial Service) on Saturday August 25,2007 at 11:00 AM at North Shore Congregational Church 7330 N. Santa Monica Blvd. Fox Point, WI.

Tuttie, Chris, DeAnn, Betsy and I have spent the last few days making arrangements, doing some photo boards and feeling numb. Phil and Paul will be home from Canada on Thursday afternoon. A large group is flying in from Utah.

Most of all, I feel how loved Maggie is, how full her life was, and how courageous she was. None of this is news to me, but it means so much to read the online tributes to her here and on the facebook page.

Counselors from the middle school and high school will be at the services.

I moved photos around this morning on the page. Look at the photo page.

Peace
Cindy and Team Maggie

Sunday, August 19, 2007 12:27 AM CDT

Here are the details for the services to celebrate Maggie's life.

Visitation at Feerick Funeral Home 4-7pm Friday August 24th. Memorial Service at North Shore Congregational Church 7330 North Santa Monica Blvd., Fox Point. The Memorial Service will be Saturday at 11AM.

The Death Notice in the Sunday Milwauke Journal had a few errors in it. It did not mention Maggies Beloved grandparents, Estella Pedersen and Albert(Nina) Schumann and the listing for COSI (the people who run Mags cherished camp) is wrong. These will be corrected in the Monday paper.

Maggie's friends have set up a Facebook page in her memory.

A million thanks for all of the kind messages

Team Maggie

Saturday, August 18, 2007 11:48 AM CDT

Maggie had a somewhat restless night, but Mom got some sleep. As I was talking to the hospice nurse, Dave, who had spent the night, she slowed her breathing down and started her passage. Betsy came in and joined us, and Maggie slipped peacefully away. A peaceful and calm ending to a very full and courageous life.

Family, the hospice people, and the palliative care team, along with Susie have been here all morning. The funeral home will be here in a minute, and we will go make some more plans.

I will update the site as we finalize our plans to celebrate the life of a kind, brave warrior.

Cindy and the rest of Team Maggie

Friday, August 17, 2007 2:43 PM CDT

Yet another girls night last night. Maggie was restless and uncomfortable until about 8AM, and then she got comfy, her breathing is a little less labored, and she seems to be sleeping. The palliative care team made a house call this morning, along with the hospice nurse. Adjusted the morphine some more. They are all very kind and caring.

I finally have agreed to some overnight nursing care help. It will start tonight through the hospice agency. I'm hoping to sleep some while they are here, and consequently, I'm sending Tuttie back to her apartment for the night. Betsy will be here with me. Chris and DeAnn have been here most of the day. A huge help. We all take turns being with our team leader(Maggie). She continues to have periods where she is spunky and funny.

Thanks for all the messages

Team Maggie

Thursday, August 16, 2007 2:28 PM CDT

I thought that Maggie had a little more peaceful night last night, but it seems that was only because I slept for a little bit. We had another girls night. But no TV, just some CDs and I sang Maggie some of her songs she loved as a toddler. But she is NOT interested in having me sing to her again. Hmmmmmm

Michelle, the hospice nurse was here this morning, and talked to the palliative care team at CHW. Increasing her pain meds, which is for help in breathing. Maggie tells us whenever we ask that she is not in pain. But she can't catch her breath. Crap.

We all appreciate the support and prayers.

Team Maggie

Wednesday, August 15, 2007 2:58 PM CDT

A long night, but Maggie was a little more comfortable with the new medications. The hospice nurse was here earlier today and they increased the morphine dosage to try and get her more comfortable. We didn't get too wild with the girls night, just all of us together does the trick. We tell Maggie how much we love her, rub her back and sometimes listen to tunes or watch TV. She is still spunky enough to tell us when to leave her alone.

Kind friends dropped off a whole refrigerator full of food this morning. Thank you very much.

The weather here matches my mood. Dark and rainy. Thanks for all the prayers, support and messages. They help all of us.

Maggie, Cindy, Betsy, Tuttie, Chris and DeAnn

Tuesday, August 14, 2007 7:47 PM CDT

Not able to get to either hospital today. Too short of breath...........So I called the hospice nurse and she came and then in the afternoon, Susie, Maggie's nurse practioner came to see us here.

Maggie got started on a morphine IV to help with the shortness of breath, and we got other medications changed to IV that I can give her if needed. Tuttie was here most of the day, went home and has come back for the night. Betsy is going to spend the night also, so it will be a girls party. Chris and DeAnn have been here all afternoon.

Thanks to all of the supporters out there. I tell Maggie about all of the messages. It's a good thing she likes to hear her mom drone on and on.

Maggie and Cindy

Monday, August 13, 2007 8:23 PM CDT

A weekend of "flying under the radar", as I like to call it. Staying home, spending time with family, and Maggie got lots of quality sister time. Quality sister time can be spent with your sister lying in bed with you watching a movie, your sister making brownies for you, or just listening to music together.

Michelle, aka Peacock #1, was here on Sunday for a visit. Maggie's face lit up when she saw her. Michelle is a counselor from camp, and a sister of another cancer warrior.

Today, Maggie was supposed to go out to Froedert for radiation therapy, but I vetoed that, as she was too weak and short of breath to get to the car. Chris has been carrying her up to bed the last couple of nights. The hospice nurse, also named Michelle, was here this afternoon, and we got some more things ordered. Breathing treatments with a home nebulizer, some other medications to help with the work of breathing, and some oxygen tanks for transportation (ie going to and fro from the hospital).

Tomorrow Maggie has radiation therapy scheduled in the morning, and then an appointment in oncology clinic in the afternoon.

Betsy just called and she is coming over again tonight. She was here for a couple of hours this afternoon. Tuttie is going with us to the hospital tomorrow.

Maggie and Cindy

Saturday, August 11, 2007 7:41 PM CDT

Chris's family came Friday morning for a last visit before they headed back to Utah. It was great to see everyone, and Maggie (and I) especially enjoyed having Angie's 7 month old baby to hold and play with. Babies and toddlers have always loved Maggie. We will be in the elevator at the hospital and they look at her and smile. I do too.

Michelle, the home hospice nurse was here in the afternoon on Friday. She is very kind and patient in explaining everything to Maggie. She is a huge help to me, as it is just too hard to be the nurse all of the time.

Betsy and Maggie are upstairs watching "Friends" right now. Big surprise. Tuttie and Chris and DeAnn have all been here today. Phil called while I was in the middle of typing this entry.

Another Michelle (aka Peacock#1) is in Chicago this weekend for a wedding and is coming to visit for a bit tomorrow. So pancakes will be later in the day. I LOVE the picture of the bunny with the pancake on his head.

Maggie and Cindy

Thursday, August 9, 2007 8:46 PM CDT

Maggie has had two great visits with part of her family from Utah. Grandma and Grandpa Schumann, Aunts Kathy, Cheralee, and Lanet and Maggie's cousin Angie along with Angie's daughter Daea, have been here in Milwaukee for the last few days. On Wednesday they all went over to Bayshore and met Betsy and had lunch at the Cheesecake Factory.

Today Mags was going to go to the movies with the family, but wasn't feeling up to it. She has been using some oxygen here at home, and wasn't sure she would be able to sit through a movie. So everyone came here for a visit.

On top of the continuing radiation therapy, Maggie is worn out. Tuttie has been over to visit every day.

We continue to have "Friends" therapy every evening. Some nights are better than others.

The lurkers term comes from "Friends" from the episode when they are in Las Vegas and the little old lady is lurking around Phoebe at the slot machines. It applies here to the people who check on my warrior all the time, but don't sign in. I know they are there, though, because I can feel their love and prayers.

Thanks for checking in
Maggie and Cindy

Tuesday, August 7, 2007 6:31 PM CDT

It's hot and humid here, I guess we fit in with the heat wave.

Maggie and I are trying to recover from Uncle Phil withdrawl. It was great to have him here. He told Maggie some stories from our childhood while she was getting her radiation treatment yesterday. He is enroute to the camp right now. He will be back at the end of the summer.

Today Maggie and I went out to Froedert for her radiation treatment (Chris met us there), and then over to Children's for an appointment with Susie in oncology clinic. Maggie got her port reaccessed, as I had deaccessed it this morning after her fluids were finished in preparation for having the needle changed today.

Tuttie was over this afternoon, and we all had fun going through a box of costume jewelry I had found in the craft room when I was cleaning it out a few weeks ago. There was stuff from her grandmother, mother and alot of 60's and 70's stuff in there. Some of the earrings were from the 80's and were absolutely huge.

We have had lots of visitors over the last few days. Mags and I are both beat tonight. Radiation every day for the rest of the week.

Maggie and Cindy

Sunday, August 5, 2007 7:32 PM CDT

Maggie has spent the weekend getting lots of Uncle Phil time in. We decided against the pancakes yesterday morning, as she was too nauseated to eat. I gave her some IV zofran last night and this morning, and things are better. Still no appetite. Tuttie and Phil and I did have waffles this morning.

Betsy spent the day here yesterday. I did go out for awhile and relax some. Chris and DeAnn have been here both days this weekend. Chris' family left from Lehi, UT today and will be here tomorrow or Tuesday.

I came back from Target this afternoon, and Phil had trimmed the tree in my backyard for me. He is such a great brother and uncle. He always knows what to do to help. Tomorrow he is going to radiation therapy with us before he heads back to Canada for the rest of the summer. Maggie and I have visits with the Hospice nurse and the hospice social worker in the afternoon. Then a friend of hers is coming over so that they can discuss the new Harry Potter book and the movie. We all loved movie.

Time to head upstairs.

Thanks for checking in.

Maggie and Cindy

Friday, August 3, 2007 7:48 PM CDT

At about 1pm today, Maggie and I got the wonderful gift of having Uncle Phil come. He is back in Milwaukee for a visit until early Monday morning. He and Maggie spent alot of time being close this afternoon. Paul's family from Naperville also came up for a quick visit. Tuttie was here for dinner this evening. Chris and DeAnn also stopped by.

It will be nice to have a two day break from radiation this weekend. All of the people associated with radiation oncology at Froedert are so kind and thoughtful.

Maggie is very beat this evening. I think we will head upstairs soon. Uncle Phil is coming over in the morning to make waffles for us.

Thanks for signing in, all of you lurkers and you regular visitors.

Maggie and Cindy

Wednesday, August 1, 2007 5:43 PM CDT

After the decision to get home IV fluids, Maggie's stomach has calmed down, and we've been able to get her medications in. It is important to keep her pain in control, and we've been fortunate to have a great team working with us to do so.

Tuesday afternoon, the hospice care team came to the house to meet Maggie and I. They will be helping me to keep her IV medications ordered, and provide a full range of services that we aren't ready to use yet.

Today we went to clinic after Maggie's radiation therapy and had a quick check over. Then home. Tonight Maggie, Betsy, Peter, Chris and I are going to see the new Harry Potter movie. I am looking forward to seeing the movie and eating a huge tub of popcorn.

Tomorrow, after radiation, Emily and her mom are coming from Chicago to visit for awhile. Emily is a dear friend of Maggie's from camp.

We are looking forward to Uncle Phil on Friday.

We love the lurkers signing in.

Maggie and Cindy

Monday, July 30, 2007 8:02 PM CDT

Another long day at the hospital.

Maggie had radiation treatments to the spine tumor on Saturday and Sunday. She continues to have alot of vomiting and nausea. Along with no appetite and little energy. She did have enough spunk to finish the Harry Potter book. On Sunday night, I noticed another bump on the top of her head. She said that she had noticed it on Saturday, but just didn't want to deal with it. I can't blame her.

She had Dr. Firat look at the bump this morning, and he feels that it is probably progression of this horrible disease. He plans on widening the beam of the radiation to include this area.

This afternoon, we had a meeting with Dr. Warwick (oncology), Susie(nurse practioner), Sheila (social worker) and Dr. Humphrey (palliative care). Maggie had her port accessed so that I can make sure that some of her meds get in her and she can get some IV fluids. The hospice team will come and meet with us tomorrow here at home.

Uncle Phil is flying in on Friday for a quick couple of day visit from Canada and Chris' parents and some of his sisters are coming to visit next week.

One of Maggie's stepsisters and DeAnn's twin, Leanann, came to see Maggie on Saturday along with Jeannie's children. It was fun to have some little kids in the house for awhile. Tuttie was here both days this weekend, and stopped by today, but we were at the hospital.

I appreciate all of the kind offers for help, but I am overwhelmed at the moment. We do need all of the lurkers to sign in to keep our spirits up.

Please keep Maggie in your thoughts and prayers.

I especially like the note from Maggie's teacher about her Harry Potter themed dream.

Maggie and Cindy

Oh!!some good news....Betsy applied to MATC and got her acceptance letter on Saturday. We are all thrilled and proud of her.

Friday, July 27, 2007 4:55 PM CDT

It's been a long and challenging week. On Tuesday, Maggie had simulation (plotting) and started radiation to the tumor on the top of her head. We (Maggie, Chris and I) met with Susie in the afternoon and talked about how terrifying it is that these tumors are growing so fast. After we finished, Maggie looked at me and said "I think we need some retail therapy", which we had already planned, as we needed to get birthday presents to celebrate Betsy's birthday that night. So we went to Mayfair and found some good things, and I ran into an old and dear friend from work and got an uplifting hug. Betsy and Peter came over in the evening and we had takeout for dinner. Can you believe Betsy is 24?

Wednesday, Betsy went with us out to Froedert for the radiation therapy, we got some lunch, and then Maggie and I went to Tuttie's to get her computer working. I managed to score some more good daughter points when I found something she had misplaced. Go Cindy!!!

Thursday was radiation and then a clinic visit. Over the last few days, Maggie has had decreasing strength in her right hand, so Susie and the oncology docs wanted her to have an MRI of her spine. We had to wait a couple of hours for the test, but spent them knitting (Cindy), napping (both of us), talking with the psychologist (both of us), and talking..... The MRI showed a tumor that is compressing her spinal cord in the thoracic region, and they wanted us to stay overnight on the HOT unit and get radiation started on it today. Which we did. It was helpful to see lots of reassuring old friends on HOT, but come this morning, after the planning and treatment, we were so pleased to come home. Maggie is curled up in a chair reading Harry Potter. Chris was here earlier so I could fill some prescriptions and go to the grocery store. He and DeAnn spent a long time with us on the HOT unit last night.

So, frankly speaking, we have had way too much crappy news this week. Maggie also has an abcess in her mouth. She got started on some IV antibiotics yesterday, and now is on the oral ones.

In order to get the tumor in the spine under control, Maggie is going to get radiation this weekend.

I don't know what else to say right now. We are going to get some Friends therapy tonight and have a steak on the grill. Maggie's pain is in good control at present.

Thanks for checking in
Maggie and Cindy

Monday, July 23, 2007 11:31 PM CDT

We did lay low over the weekend. Maggie was exhausted from camp and spent alot of time napping. Today she was very nauseated, which progressed to vomiting and then a trip to clinic. She has a new bump on her head on the top in the middle. Plus the inside of her left arm is numb and an area on her face is numb.

So she got her port accessed, a liter of fluid given, and a 24 dose of zofran given. Then we went to radiology for a CT scan of her head, chin and chest. We met with Susie and Dr. Jogal and Dr. Firat afterwards and found out that there is a new tumor there and that the tumors in her lungs appear larger. Back up to clinic for a dose of IV decadron, a steroid that is specific for brain tissue. Tomorrow morning she will get simlulated and a new mask made for cranial radiation. We're not sure what time that will be at. Or if we will have to go to clinic to get the decadron IV. We're hoping her stomach may calm down enough to get her oral meds in.

We still haven't made any decisions about treatment. Radiation still works well on these tumors, but it is impossible to treat all of them or to treat the ones in her lungs. These new events let us put off those decisons a little longer and reinforce our feelings that we want Maggie comfortable in all possible ways.

Please keep my brave warrior in your thoughts and prayers
Maggie and Cindy

Saturday, July 21, 2007 1:36 PM CDT

It is so nice to have the camper back home. She is totally and utterly exhausted. She was able to stay awake for the car ride home, and she told Betsy and I about some of the activities she was able to take part in.

The best part of going to camp for Maggie is to be with other kids and counselors who understand the cancer world. I don't mean to say that other people don't, but it is important to have a place where you really feel normal. She raved about the staff, said all of the counselors, old and new, are so kind and work so hard. She had lots more to say this year about the medical staff, as she was involved with them more this year. She said that they made it possible for her to be able to stay there for the whole two weeks. Her camp family is such an integral part of who she is.

A kind friend picked up a copy of the new Harry Potter book at a release party last night and dropped it off here, so I had it with me when I picked her up. She is trying to read it now, but is having a hard time staying awake. Tuttie was here this afternoon and Chris and DeAnn had stopped at camp this morning on their way to a weekend vacation. It helps us all so much to see how happy Maggie is and how much she loves camp and camp loves her. Enough gushing.

Going to lay low and get some Maggie time in this afternoon, and perhaps tackle the mountain of laundry. We are going to have our Sunday morning pancakes with Tuttie tomorrow. Monday will bring radiation therapy, and a visit with the oncologist on Tuesday.

I'll try and post some pictures tonight
Thanks for checking in
Maggie and Cindy

Saturday, July 14, 2007 7:54 PM CDT

I got a wonderful letter today from the camper. Although she continues to have pain in her shoulder she has been able to participate in the watersports progam. She says that the diving program is "utterly exhausting".

Best of all she is having a great time with her friends. She said she has had some great talks with them. I am so pleased she is there taking part in all that camp has to offer. She will be there until next Saturday.

Busy working on the craft room. It's turning out well. Today I hung some of Maggie and Betsy's artwork in the room.

Thanks for checking in.
Cindy

Wednesday, July 11, 2007 10:09 AM CDT

Well, I got a phone call from Maggie yesterday afternoon wanting to know if I'd sent a box yet, because there was something she wanted put in it. She sounded great, said she was feeling good, and is having a great time. She said that she had passed the swim test for scuba dive training. They were having her do hers in the pool, swiming ten laps and then treading water. You know how some people are floaters? Maggie and I are both like human corks. We just float away on the surface. I am so pleased she is there and feeling good enough to relax and have fun!!!

I'm working on the fourth bedroom; our plan has been to make that into a sewing and crafts room. I would love to be done when she gets home. Today I am also getting a badly needed trip to the hairdresser in and going out for dinner.

Cindy

Monday, July 9, 2007 6:03 PM CDT

Maggie is at camp. On Saturday morning, I wasn't so sure we'd get there. After she got up, she got nauseated and started to vomit. "Do you still want to go today?" and the answer was a resounding YES. We got there and got as far as the medical check in where she went to a bed in the back and got ill again. Betsy and I finished checking her in and getting the luggage in the right spot. Went back to medical and gave her some more TLC(she was already getting lots of that from Susie and the other Medical staffers). We left after awhile hoping it was just nerves and it would get better without us there.

Sunday, when we got there for the lunch, she was still in the medical unit, but feeling a little better. We did make it to the ceremony for about 5 minutes, and Maggie watched us eat lunch. Her color and energy were better than on Saturday. When we left she was lying down in the med unit.

I got 2 calls this afternoon. She checked out of the med unit on Sunday evening and joined her cabin. Susie called me and said she looked great, was holding her food and meds down. The medical director called also and told me the same. Maggie had wanted them to call because she knew I would be worrying about her. Me?

I know that camp is the very best place in the world for Maggie. Her camp family all love her and care for her and make her feel normal in ways her regular family can't.
I feel so lucky to have such a special place for her.

I have kept busy doing some chores and watching some bad TV. Betsy and I had a great day together on Saturday.

Cindy

Saturday, July 7, 2007 9:39 AM CDT

Maggie is upstairs, getting dressed before we head off to camp. The fourth was low-key. Maggie has a new area of pain in her left scapula. Thursday morning she told me, "I want to go see Susie in clinic today." So we did. And we added a new medication and adjusted some of the others. Susie asked Maggie if she wanted her to investigate the source of the pain, or just treat it and get her to camp. Maggie was quick to choose the latter.

She did go to the wonderful Whitefish Bay fireworks at Klode park with Chris and DeAnn. She had a great time.

Radiation on Thursday and Friday. They are done with the arm, so after camp she will get the last of the treatments for the groin and maybe finish up the leg. The burn on her leg is healing well.

Just a few last things to add to the suitcase, and then off we go to Lake Geneva. We will stop for lunch on the way there. Betsy is going with us. I have the camera in my purse already.

Tomorrow is the pork chop dinner that welcomes kids to camp. I don't think Tuttie will be able to go, as it is supposed to be in the 90's and very humid. Bad breathing weather. The rest of us will be there.

We talked to Uncle Phil in Canada last night. They have special guests in camp right now....Paul's dad, brother and nephew.

Thanks for checking in
Maggie and Cindy

Tuesday, July 3, 2007 5:37 PM CDT

On Sunday, for our pancakes, we got a great surpise when Betsy came and joined us. We had regular pancakes with strawberries and blueberries and bacon. Betsy and I spent the early part of the afternoon cleaning out our cars and I washed mine. Something so gratifying in a mindless activity. Maggie and I spend so much time traveling in the car to and fro for her appointments. I found all kinds of stuff in there; old french fries, straws, wrist bands, pencils, the odd coin. A real archeological treasure.

Radiation on Monday, along with a trip to the dollar store to finish getting "stuff" for camp. (Glow necklaces and a nerf football). Today we had labs, a clinic appointment, the photo session out in Waukesha and then radiation. They have decided to stop treating her leg so that the skin irritation will have a better chance of not progressing. Still treating the arm and the groin.

Not sure what we will be doing to celebrate the fourth.
Have a good and safe holiday.

Maggie and Cindy

Sunday, July 1, 2007 9:29 AM CDT

It is always a good thing to have the weekend off from radiation therapy. Maggie is starting to have skin discomfort from the therapy. Lots of lotion. It is hard to believe that a week from now she will be at camp!!!!

The fireworks on Thursday were spectacular. It was a little breezy and cool on the patio, but Betsy, Maggie and I huddled together. Tuttie ended up watching from inside.

Frfiday was radiation and 2 units of blood transfusion. We watched Talledega Nights and got some good laughs in.

Yesterday we went to Target to get some last camp supplies (snacks, cameras, sunscreen, bug spray) and then Maggie went with Chris to see a movie in the evening. Topped off by a Betsy visit. A great day.

Tuttie will be here at 11 for the Sunday pancakes. I have a pot of coffee brewing, so I better go do some quality control on it and have a couple of cups.

Thanks for cheking in.

Maggie and Cindy

Thursday, June 28, 2007 5:31 PM CDT

Well, Wisconsin continues to have it's usual unseasonable weather. A couple of days ago it was in the 90's, and right now, at 5:30pm it is 61. Tonight we are going to see the fireworks for the opening night of Summerfest at the Milwaukee Art Museum. Tuttie, Betsy, Maggie and I will head down to a party at 8, and the fireworks are at 10:30. We will be having dinner at the party. We've been looking forward to this for a couple of weeks.

Tuesday, Maggie had to cancel the photo session, as she was feeling crummy. We were able to reschedule for next Tuesday.

Yesterday, she had radiation in the morning and then a clinic appointment. Her hemoglobin is on the low side, and her white count is elevated, so they type and crossed her for some blood, and drew blood cultures. Chris and I also talked to Susie about the treatment options that have been presented to us. We have not made any decisons yet. Our immediate goal has been to get Maggie to camp, and get the pain under control. Her pain is much better, and she is needing little of the break through pain medication. She continues to be on a large maintence dose of pain medication. The radiation is also helping the pain.

Tomorrow, we will go to radiation at noon, and then over to clinic at CHW so she can get a transfusion of red blood cells.

Don't you wish this program had spell check? Or is it better for me to try and recall some basic spelling rules......

Thanks for checking in
Maggie and Cindy

Tuesday, June 26, 2007 3:19 AM CDT

A very subdued weekend. I guess it had to be after all of the excitement of Hollis and and Emily's visit on Friday and then Lexi coming on Saturday. We did manage to get in our usual pancake breakfast with Tuttie on Sunday. A great way to start the week. While she was here, I went out and ran some errands.

Yesterday was a trip around noon to Froedert for radiation. They decided to start radiating the femoral area, as she is now having pain there. The area on the top of her head is stable, and still barely shows radiograpically. (big word, eh?) Then we came home and went over to BayShore and hit the bookstore.

Someone left a framed copy of a picture of Maggie and her buddies from the graduation dance in our front door last week. Thank you. She loves it.

Today will bring a trip to Froedert for radiation and then we go to Mortenson Photograpy in Brookfield for Maggie to be photographed for the MACC fund calender. Betsy is coming along for the fun and sister time.

Thanks for checking in.

Maggie and Cindy

Saturday, June 23, 2007 5:06 PM CDT

Maggie's camp friends (from the Chicago suburbs)came Friday at 10:30. I said hi to them quickly and then told them she was upstairs.....and off they dashed to giggle, tell stories, plan for the upcoming session and smile. Emily's mom and I gathered them up at about 11:45 and we went over to Bayshore and got some lunch. Then the girls hit a few stores until we had to leave to get Maggie to her radiation therapy appointment. Such good therapy for all of us. Betsy joined us while we were having lunch and spent the rest of the day and evening with us. Maggie needed a break late in the afternoon, but she did great. She said that it makes her more positive about going to camp and being able to be a part of things.

Today we are just chillin', I cut the grass and did some power washing of the patio. Tuttie came by for a visit, and another of Maggie's camp friends (this one lives in Grafton) stopped in. It is 70, sunny and breezy here.
She has needed less of the short acting pain medication today and slept well last night. So all in all, it is a wonderful day.

When we were at CHW on Thursday, Maggie and the team did decide that she would do a course of oral VP-16 chemotherapy prior to camp, while we are looking at the other options. So she started that yesterday. It is five days long.

Can you believe all of the messages? I love it and it means so much to all of us. Thanks everyone.

Maggie and Cindy

Friday, June 22, 2007 0:16 AM CDT

Thursday, Chris, Maggie and I went to Froedert for the radiation treatment and then over to CHW to meet with Dr. Warwick, Susie, Amy, and other members of Maggie's team.

They told us about options that are open for treatment of the tumors. They include some studies at the NCI in Maryland, a study here at CHW, another drug, and more. It is all way too overwhelming. We don't really have any idea what our choice will be. Somethings we need to think about alot and discuss at length. Plus ask more questions.

This evening, Maggie is hurting quite a bit, and having a hard time getting to sleep. I came downstairs to stop putting pressure on her. Tomorrow, two of her camp buddies are coming for a visit. We had hoped at first to do an overnight, but I don't think Maggie is strong or comfortable enough for that at present.

I am overwhelmed by and appreciative of all of the support. It helps so much.

Maggie and Cindy

Wednesday, June 20, 2007 8:36 AM CDT

Wow, the request helped. Last night was the first night that Maggie has slept through the night in over 2 weeks. And she had a better day yesterday. The long-acting pain medication, plus the radiation seem to be helping. When we got home from radiation, she wanted to go to the grocery store with me (Trader Joes) for a quick trip to get some neccesities (milk, juice, bread, cereal) and some not so necessities (pizza bagels, cookies). The weather was beautiful, and I loved having her with me.

Today we will be at CHW at 11 for yet another CT scan. She has a bump on the top of her head that is tender and visibly growing. We had Dr. Firat look at it yesterday. Tuttie told Maggie about going to the park in Wabash; catching fireflies in a jar with holes in the lid.

Keep the energy flowing.

Maggie and Cindy

Monday, June 18, 2007 7:04 PM CDT

Thanks for checking in. Pain continues to be present for Maggie. We had her pain medication adjusted early Sunday morning. We have been working with the Palliative Care team to get the beast under control. This afternoon on our way to Froedert for radiation therapy I saw a glimpse of a smile, laugh and a bit of an appetite. (mine is just fine, thank you) Betsy was with us for the trip which helps. The radiation should start helping with the pain this week too.

Tomorrow they will start radiating the area on Maggie's arm also. Tuttie is coming with us tomorrow. The technologists are looking forward to seeing her and hearing more stories about the farm she lived on in the summer in Wabash, Indiana with her grandparents. Maggie likes us to talk to her while she is getting the treatment.

Send Maggie some good karma, thoughts, prayers.

Maggie and Cindy

Saturday, June 16, 2007 9:55 AM CDT

Thanks so much for all the messages of support and love. They mean alot to both of us.

Thursday, Maggie had simualtion (plotting) for the radiation and the first treatment in the afternoon. In between, we came home and Maggie and Chris went over to Bayshore and had lunch at Cheesecake Factory, with the best server/sister in the world.

She had another treatment on Friday. A rough night last night, with lots of pain. We plan to lie low this weekend.

A special shout-out to Carol Cochran and family for a great supper on Thursday. Homemade personalized fortune cookies were the highlight. Big beaming smiles and laughter from Maggie, Cindy and Betsy. The very best medicine there is.

No further word on when we will meet at CHW nest week to discuss other plans/results. That's okay because this is all I have on my radar at the present.

Maggie is really looking forward to going to camp on July 7th for 2 weeks. We will do everything possible to get her there.

Maggie and Cindy

Wednesday, June 13, 2007 7:51 PM CDT

A tumultous couple of days.

As I mentioned last week, Maggie has had increasing pain in her right leg, in the femur area. So Tuesday when we got to clinic they sent her for an MRI of her leg, and CT scans of her head, chest and abdomen. We met with Dr. Warwick and Susie afterwards and were told that Maggie has new active tumors in her femur, both lungs, and questionable areas in the orbit of her right eye and her right femoral area.

This morning we were back at CHW for an MRI of her head, an ultrasound of her femoral area and a bone scan. These tests showed that the area in the orbit of her eye did not enhance and may not be a tumor. The area in the femoral region is either an old tumor that is dying or may be an infected lymph node. But an area on the upper part of her right arm enhanced, as did an area on the top of her skull. She has not had pain in the arm, but that is the arm that she had the venogram on about 6 weeks ago. She has had some pain at the top of the skull, but had attributed that to the wig and getting accoustomed to that. So to top off the day, she had an MRI of her arm.

Tomorrow we have a 9AM appointment with Dr. Firat, the radiation oncologist who has seen Maggie in the past, for a discussion about treatment for the tumor in the leg. They will be unable to radiate the lung tumors. The main goal of the radiation will be for pain control.

Chris went with Maggie and I both yesterday and today for the appointments. He plans to come to Froedert tomorrow. Tuttie is planning to come over tomorrow afternoon after we come home. Betsy is here watching a movie with us as I type this. We have talked to Uncle Phil and Paul a couple of times on the phone. They left for Canada yesterday morning and are in Dryden right now.

Dr. Warwick is investigating other chemo regimes, and we will meet with her next week to discuss them.

We are all scared, angry, and sad about these devlopments. Every one will do everything in their power to help Maggie fight.

Maggie and Cindy

Saturday, June 9, 2007 8:09 PM CDT

I was so proud of Maggie and her whole graduating class yesterday evening. She pushed herself to go to the activity day on Thursday, and went for the whole day on Friday. I had a couple of conversations with Susie, Maggie's Nurse Practioner to try and get her pain medication adjusted to help her be part of these activities. They wanted her to come out and get some IV pain medication on Friday afternoon, but she was very resistant to this, as she had some primping to do. And with very good results......as the picture at the top will attest to.

Tuttie, Betsy, Phil, Chris, DeAnn and I were all there to cheer Maggie on. She got a huge round of applause as she crossed the stage. We made a very brief appearance at the reception afterwards, and then left Maggie with her buddies.

I did manage to get to the dance a little early and was so pulled back 36 years. Same gym, lots of kids having a good time.

Needless to say, Maggie has had alot of down time today. I'm not sure if she will get to school on Monday. She is due for admission for the next cycle of chemo on Tuesday.

Thanks for checking in
Maggie and Cindy

Thursday, June 7, 2007 9:25 AM CDT

Maggie is at her 8th grade activity day as I write this. She has been at school so much in the last month. I am very proud of her. The class is going to the RecPlex in Racine for the day. She was insitent on going even though she is having some increased pain. She just wants to be a part of everything.

Labs on Monday were good for where she is in her chemo cycle, and no interventions were needed. Betsy went with us for our trip out to CHW on Monday and what should have been about an hour round trip turned into a 2 hour trip due to a semi overturning on the freeway and backing everything up. We used the extra time to sing and dance in the car.

Last night Betsy, Phil, Paul, Tuttie, Maggie and I went to California Pizza Kitchen at Bayshore for dinner. Maggie and Uncle Phil were in charge of ordering for the table and they did a good job. Phil and Paul leave early Tuesday morning for Canada for the summer.

Tomorrow night is promotion at the High School Auditorium, a reception after, and then the 8th grade has a dance. Plus a day of school before hand. Maggie also has a couple of small parties to attend. Oh, what a social whirl.

I'd like to ask for good thoughts, prayers and such for Tim. He is Maggie's friend Michelle's brother and his brain cancer has recurred. He had surgery a couple of weeks ago and is recovering well, but now will start chemo again.

Thanks
Maggie and Cindy

Monday, June 4, 2007 0:04 AM CDT

Quick weekend update. Labs on friday showed decreased platelets, so Saturday morning back to CHW for a platelet infusion. In the evening we watched "Night at the Museum".
I would want to move all the stuff in the dioramas around.

Today we had our morning pancakes (blueberry this week) with Tuttie. In the afternoon I did a bunch of chemo mom chores and we had lots of visitors. Phil, Paul, Chris and DeAnn were all here. Maggie and Uncle Phil are having anticipatory grieving regarding their upcoming 10 week seperation while he is in Canada.

The whole family is getting together for a dinner on Wednesday night.

Maggie has labs tomorrow. What was I thinking hoping for a week off?

Happy June
Maggie and Cindy

Friday, June 1, 2007 11:09 AM CDT

I don't know where she pulls the energy from, but Maggie has been at school every day since she got discharged from the spa on Tuesday. I am exhausted just thinking about all she does. Today is Civil War Day. Due to my advancing age, I forgot to get the materials for a hoop skirt for Maggie, but a wonderful teacher is going to lend her one. We did have some long skirts (from some fad in the 70's) tucked in a closet here, but they just didn't pass muster.

Which brings me to another thing (other than my failing memory) that I hadn't mentioned. Maggie had decided to get a wig. Due to the cranial radiation she had last fall, it appears that a spot on her head will never re-grow hair. Between some cycles of chemo this spring she had some fuzz and we were able to determine this. So she got fitted for a wig, we got it last week, and she wore it to school on Weds and Thursday. When we were in the hair salon where we got the wig and they were fitting it to her, it was such a surprise to see her with hair past her chin. She looks even more like me. I am very proud of her, as it is scary to change your appearance. Especially when you are 14. She got loads of compliments from her peers and teachers and my friends and family.

Summer has finally come. It is hot and muggy here. Chris installed a ceiling fan in the den for us the other night and it is wonderful. We do have central air, but I prefer a fan when it isn't too muggy.

A friend of Uncle Phil's came over last evening to show Maggie his new puppy. A beautiful black lab. Maggie is a real animal lover.

Out to CHW for labs today, and then hopefully a week break, until the 12th, when Maggie will be admitted for her next chemo cycle.

Thanks for checking in. Thanks for signing in you lurkers.
Maqgie and Cindy

Tuesday, May 29, 2007 7:08 PM CDT

Home again, home again. Amy, the nurse practioner who sees Maggie when she is inpatient, came in this afternoon at 4:40 to see if we wanted to go home, and we got her port deaccessed, packed and were out the door in aoubt 15 minutes. A land speed record obtained partly because Uncle Phil was walking in the door on his way home from school and he took our stuff home for us. And then he ran to Fitzgeralds and picked up Maggie's antibiotics for us.

They had told us yesterday that she would probably have to come home on IV antibiotics, but they changed their minds, woo hoo. Of course we have strict guidelines for calling. It is great to be here. Chris was over this afternoon, and Paul had stopped by earlier to water my garden for me.

Maggie is already talking about going to school tomorrow. We'll see.

Sign in you lurkers!
Cindy and Maggie

Sunday, May 27, 2007 7:47 PM CDT

It seems odd to be updating twice in the same day, but I'm not sure if last night/early this morning counted as yesterday or today. My body thinks yesterday, my mind says today. Enough semantics.

The resident came in the afternoon and let us know that one of the blood cultures is positive. These are the ones that were done in the ER. So that tacks at least one more day if not more onto the stay. Maggie was started on an antibiotic in the ER yesterday. She is bummed by this, as that negates a discharge tomorrow.

I will probably run home tomorrow for a bit to get some more clothes. And I forgot to pack a season of "Friends". How can you possibly survive in the spa without that?

There is a nice patio near the dining room on the lower level where Maggie and I went for lunch. Got a little bit of the nice weather. We had scored some Brewers tickets for tomorrow when we were in clinic on Friday, so I gave those to one of the nurses .

Happy Memorial Day
Maggie and Cindy

Sunday, May 27, 2007 4:42 AM CDT

As far as a clinic visit goes for 2 units of blood and a pack of platelets, Friday was very quick. We got there around 9:30 and we were home by 3:30. In time for me to get the last of the plants in the garden and for a quick Uncle Phil visit on his way to the shack. He helped me deal with the results from when a really large bottle of liquid laundry detergant leaks all over the basement floor. Sometimes I need a calming influence when a little something like that pushes me over the edge. Thank heavens for Phil.

Maggie slept in on Saturday morning. Just as I was getting ready to go out and cut the lawn, she told me she really wasn't feeling well, with a headache and fever. Sure enough, she was 101.1, so I packed a quick bag, and here we are at CHW. She simply doesn't have enough white cells at this point in her cycle to fight any type of infection, so she needs to be here.

We did manage to pack some movies, and last night we watched "Vanity Fair". I think we're done with period pieces for now.

I'm going to check my email and try and get a little more sleep.
Maggie and Cindy

Thursday, May 24, 2007 8:41 PM CDT

Another day, another change in temp here in Wisconsin. We went out to CHW after Maggie went to school today for labwork. We got the call when we got home that she has to go back first thing in the morning for a unit of platelets and 2 units of blood. Pack a lunch and a video.

Uncle Phil was here this afternoon and helped me put screens in Maggie's room. This is an older house with seperate screens and storms. Luckily the windows in Maggie's room have the screens on the interior and the windows crank outwards.

We came home this afternoon to find a new garden ornament of a butterfly in the front garden. Like Maggie's butterfly Pat. (look at the picture page) Thanks, Mary.

On the way home from CHW today, Maggie told me that she had emailed a radio station and nominated me for "Working Woman of the Week" for my job as a chemo mom. Doesn't that just make you go ahhhhhh. It is a job that I wouldn't wish on anyone, but one that has so many rewards.

Thanks for peeking in
Maggie and Cindy

Wednesday, May 23, 2007 7:33 PM CDT

The MRI of Maggie's brain shows nothing new that could have been causing our rough nights recently. And the other Xray was better than the one last week. So we keep on.

She got to school today for the whole day, and lots of people here this afternoon. Susie (Maggie's nurse practioner) lives in our suburb, and she drove by and saw me digging in the garden and stopped in for a visit. Phil and Paul also came by. I was putting basil plants in. I love to putter in the garden.

Chris was here this evening and installed a new light by the back door for us. Another friend just stopped by to look at Maggie's outfit she wore in the fashion show.

Beautiful weather the last few days. I hope it stays over the long weekend.

Thanks for checking in
Maggie and Cindy

Tuesday, May 22, 2007 8:32 PM CDT

Maggie got to school on Monday for the whole day. She never ceases to amaze me. Then out to CHW for labs, which were good. But unfortunately, a rough nite late in the night.

So today we went out to clinic, and Maggie had an MRI of her brain and some other Xrays. Plus a clinic visit. They have to get her old MRI's out to compare them, so no results yet. I managed to get a visit in to the dentist before we went out to CHW. Thanks to Tuttie for coming and staying with Maggie while I went there.

Home about 3 this afternoon, and I got busy putting more plants in the garden. Maggie and I had a great supper on the grill, and some visitors. Uncle Phil, Chris and DeAnn were all here. I just came back in the house from a quick walk around the block. I think we will turn in early tonight. At least I will.

Thanks for checking in, and signing in, you lurkers.
Maggie and Cindy

Sunday, May 20, 2007 1:29 PM CDT

As wonderful as a trip to the spa is, it is always better to be home. The nurses at the spa are truly the best in the world. But I think that one of our faves, Evelyn, is eluding us. Maggie and I haven't seen her in a couple of admissions. She is the nurse who likes to dance with Maggie in the middle of the night.

We came home, put the bags in the house, and I promptly went outside and cut the grass, cleaned out the garage, and did some other garden work. Maggie was a great supervisor, telling me where to put some yard statues and lights. So today it is 45 degrees out.

Betsy is over right now with her kittens for a playdate. Tuttie was here this morning for pancakes. We shift the morning pancake time around depending on other things to do, so if you lurkers are thinking of dropping in for them, you never know the time they will be served.

I can't believe how quickly things are moving. Maggie's next round of chemo will be delayed a week so that she can participate in the 8th grade promotion activities.

We had a rough night last night, so I need the lurkers to sign in and cheer us both up.

Thanks,
Maggie and Cindy

Wednesday, May 16, 2007 8:37 PM CDT

Hi from CHW. Nurse Katie says "hi" to everyone. Last admission, she gave Maggie a pair of nursing shoes to decorate that she had deemed "too white" to wear. Maggie spent alot of her free time the last few weeks working on the shoes with a box of multicolored sharpie markers. So tonight Katie has the shoes on and is the star of the HOT unit.

Second day of chemo is over, yeah. Tuttie, Uncle Phil, Betsy and Chris were all here today. Maggie is getting settled in right now to watch "Lost". Katie and I are plotting how to annoy her during it.

Thanks for checking in
Maggie and Cindy

Sunday, May 13, 2007 8:24 PM CDT

HAPPY MOTHER'S DAY

I just finished leisurly picking up the kitchen after a wonderful Mother's Day dinner. Phil cooked brats and italians on the grill. Tuttie, Betsy and Paul were also here. We had a very nice dinner. My daughters got me nice sappy cards and wonderful presents. Maggie made me breakfast this morning. I puttered in the garden this afternoon, too.

Continuing to keep an eye on Maggie's hand. It is intermitantly dusky. ??????? Tuesday is the spa with some extra tests prior to admission. An echocardiogram, and pulmonary function tests.

Maggie plans to go to school tomorrow. She has been to school more in the last few weeks than in a long time. I suppose I better go make her lunch!!!

Thanks for checking in
Maggie and Cindy

Thursday, May 10, 2007 6:54 PM CDT

So last night, Maggie and I were finishing our supper about 7:30 and whe said, oh mom, did I tell you I have a rash on my hand? I looked at her hand and it had lots of petechiae (small red dots, a sign of poor circulation). And her hand was slightly swollen. And it was dusky. So I called the Hot unit, they called the doctor, and we had to go to the ER for evaluation.........they were worried that she had a clot in her port or really low platelets.

Blood counts were okay, so we were home about midnight. Today Susie calls to tell us they want to do a venogram of that arm to rule out a clot, so back to CHW around noon today for more labs, a venogram (a radiology study to check flow in the arm), and a clinic visit. The venogram was fine, but her hand remains slightly swollen and a little dusky. We are to keep our ever vigilant eyes on it.

Maggie was annoyed to miss school today, but is at her choir concert tonight. I have been a little under the weather yesterday and today, so I had Chris provide the parental duties of transportation and admiration and I think I may hit the couch for a bit.

Hopefully no visits to CHW until Tuesday, when Maggie is scheduled for admission for chemo.

Maggie and Cindy

Tuesday, May 8, 2007 6:27 PM CDT

Another 2 days, another two trips to CHW. Yesterday for labs, and today for some platelets. Thank you to blood donors.

But the better news for the last two days is that Maggie went to school on Monday for the whole day and for half a day today (she had to leave at noon today for the platelets). She plans to go tomorrow. Maybe it is the beautiful spring weather or the fact that there are alot of end of the year things going on. Tomorrow the 8th grade spanish classes are going to La Perla for lunch.

I put some of the flowers in the garden today, and did lots of errands. Uncle Phil was here helping Maggie with math homework tonight.

Thanks for checking in.
Maggie and Cindy

Sunday, May 6, 2007 10:58 PM CDT

It is cold and chilly here. I was going to do some gardening today, but got just a little done.

Thursday's trip to CHW for labs brought a full day in clinic on Friday, so Maggie could get a transfusion of platelts and 2 units of red blood cells. We packed a movie, snacks and games.

Saturday was beautiful out, so we went over to Bayshore to run some errands. Maggie went to a birthday party for one of her buddies in the evening. I went to a Cinco de Mayo party.

We had our Sunday pancakes with Tuttie this morning, went grocery shopping (Maggie went with me, she usually doesn't), and then had Uncle Phil and Paul here for a short visit this afternoon. Paul brought me 4 flats of annuals to get planted in the garden. He starts them from seed in his greenhouse at the shack.

Labs on Monday and Thursday this week. Next scheduled admission is on May 15th for another cycle of chemo.

We watched the excellent Discovery channel special "Living with Cancer" tonight. They mentioned blogs, and how helpful they are. To all of those involved. I second that feeling. Feeling concected to the different communities that Maggie and I are part of has helped both of us and given us strength.

Thank you for being part of our community
Maggie and Cindy

Wednesday, May 2, 2007 8:49 PM CDT

I was thinking as I was signing in to update the page that Magggie needs to take back some ownership in this rather than just reading the updates and guestbook......I think I'll have to apply a little motherly pressure.

So today was a great day to be Maggie's mom. She and I were models for a fundraising lunch for Gilda's club. I didn't love the whole bit about being a model, but I did love seeing everyone tell Mags how wonderful her outfit was. She and her sewing teacher designed and crafted a beautiful outfit. I also loved the pampering bit with getting my hair done, and both of us loved getting our makeup done and meeting lots of new and caring people. We had lots of Maggie supporters in the audience. My heart was brimming with pride to see her enjoy herself so much. Enough gushing. Thanks everyone.

So back to the everyday life bit. Almost a full day of school on Monday and then a half day on Tuesday. She is beat tonight from all of the fun.

Tomorrow sometime will bring a trip to CHW for labs. Maybe some more school too!!

Thanks to everyone (especially Tuttie and Uncle Phil) for all you do every day to help us both. We are very lucky to have such a great family.

Maggie and Cindy

Saturday, April 28, 2007 12:50 AM CDT

What a glorious day to be home. The sun is out for the first time in a few days. It is in the high 6o's. And we got sprung before 11:00 this morning. We drove home and I got the bags in, opened the doors and went outside and pulled some weeds. The pleasures of being home are not lost on us.

Maggie is up taking a shower right now. She wants to go over to BayShore and get some lunch. She doesn't feel totally crummy yet.

Perhaps Nora Fitzpatrick's guestbook entry got lost in cyberspace because she has been blinded by the huge Happy 40th Birthday sign in her front yard!!

Thanks for checking in.
Maggie and Cindy

Thursday, April 26, 2007 11:47 PM CDT

It's cold and rainy here. We are on the 8th floor of the hospital, so usually I have a great view. Not so today.
Tuttie came out for lunch, and Uncle Phil and Chris stopped by this evening. Hump day with the chemo is over, and we're hopping to be home from this visit to the spa by 2 or so on Saturday.

Maggie and I had a two disc "Friends" marathon this afternoon. Never fails to make me laugh. The one where Rachel makes the dessert for Thanksgiving and put beef, onions and peas in the trifle.

Thanks for checking in on us.
Maggie and Cindy

Tuesday, April 24, 2007 9:42 PM CDT

After a blissful weekend, Maggie went to school for most of the day on Monday. Today was back to the real world, when we were at CHW by 8:30 for labs. Then to the cafeteria for breakfast, where Maggie picked out table for prime viewing location of people going to and fro. We saw Ann, the art therapist; Dr. King and his PA, Heather; and Katie, one of Maggie's fave nurses. We had her for Maggie's nurse in clinic today.

Up to the HOT unit by 3, then an eary afternoon of visitors, with Uncle Phil, Betsy, and Chris here. I went to Mayfair to get some supper, and brought a ice cream cake back for the nurses.

Mags is watching "Friends" right now. I'm most definetly ready for bed.

Thanks for checking in
Maggie and Cindy

Saturday, April 21, 2007 8:36 PM CDT

Maggie and I had a simply delightful day at the Shack today. Paul's brother and his family were up from Chicago, and some other friends from Manitowoc came out for the day. As usual, Phil and Paul cooked up a storm, and we ate brats and sat on the deck in 70 degree weather. It is always so good to see Ted, Claudia, Clay and Nick. Maggie and Phil took a ride on the quad runner. I took a couple of long walks in the woods.

Yesterday, Maggie made it to school for part of the day, went to a friend's house for dinner, to a dance at school, and another friend's afterwards for awhile.

Tomorrow, we have our Sunday morning pancakes with Tuttie. Monday morning is a meeting with Maggie's guidance counselor at the High School. Tuesday morning we go to clinic and Maggie will be admitted from there for her next cycle of chemo.

Thanks for checking in
Happy Spring!!!! (Finally)
Maggie and Cindy

Wednesday, April 18, 2007 1:00 PM CDT

Mags came home from school with a really bad headache yesterday. By 4:30 she was vomiting and in really bad shape. We tried some medication and she got a couple hour nap, from which she awoke vomiting again. So out to the ER at CHW at 8:30 last night.

They gave her some fluids and some meds, did a quick CT scan of her head, and told us that she probably had a migrane. We were in the ER until 1:30 and got home around 2AM. She slept well the rest of the night and most of this morning. She's visiting with Tuttie right now.

We had been prepared to spend the night or a few, so it was great to come home. I had even packed a bag. Perhaps that is the trick to coming home, to be more prepared.

Thanks to our family for all of their support during a long night. I appreciate each and every one of you so much.

We have a hopefully quick visit just for labs tomorrow.

Maggie and Cindy

Tuesday, April 17, 2007 1:30 PM CDT

Yesterday was a long clinic trip so that Maggie could get the 2 units of blood and a pack of platelets she needed. She already has more energy, and went to school this morning. Almost every day that she has gone to school this year, I tell her to call me any time if she needs to come home. She only has a few times.

She is in for a surprise this afternoon, because Betsy called me a few minutes ago and she is going to surprise Maggie and pick her up at school. She will be thrilled.

While we were finishing up at clinic yesterday, Phil was here and turned on the water outside for me, got the hoses out, etc. Then when we got home, he went and got some supper for Maggie and myself. He is the best brother and uncle in the world.

We go back to CHW on Thursday for labwork. Next admission is scheduled for next Tuesday.

Thanks for checking in
Maggie and Cindy

Sunday, April 15, 2007 4:26 PM CDT

We've had a nice relaxing spring break. Aside from the seven inches of snow that we got on Wednesday that melted the next day, we've had some sunshine and I think that maybe spring is on it's way.

We have been successful in the hunt for the very important 8th grade graduation dress, and the shoes. Accomplished in only two days of shopping!!

Maggie had labs on Thursday, and Friday we spent a long morning out at CHW so she could get a platelet transfusion. We watched the first Spiderman movie. She has labs tomorrow, and my guess is that she'll need some more blood products. But I've been wrong before.

Tuttie was over this morning for our Sunday pancake ritual. Maggie is playing with her Nintendo DS right now, waiting for Uncle Phil to stop in on his way home from the shack, where he's been for his spring break. A week without an Uncle Phil fix is a long time. Chris is also coming over to see Maggie and hopefully they will finish her science project. ( I do know what to delegate.)

Happy Spring
Maggie and Cindy

Tuesday, April 10, 2007 7:29 PM CDT

We had a wonderful Easter Sunday at the shack. Betsy and Maggie drove up in Betsy's new (to her) car, and Tuttie and I drove up together. Betsy had to leave early in order to go to work, so we had a great dinner prepared by Phil and Paul at 1pm. Then we lazed around for awhile, sitting in front of a roaring fire (it was about 30 degrees out), and watched some wild turkeys mill around the cabin. They were huge!!

Maggie and I got home soon enough that we had a fire in the evening, too.

Monday we went out to CHW in the mid-morning for blood work, and then hit Mayfair for the beginning of the search for a middle school graduation dress.

Maggie's labwork was good, so no visit needed to CHW until Thursday. Tuttie came over today, and Maggie had a buddy over this afternoon. She is at her sewing class tonight.

This is spring break, so no school this week.

Thanks for checking in
Maggie and Cindy

Saturday, April 7, 2007 2:05 PM CDT

Home again, another cycle of chemo under Maggie's belt, or veins I should say. The HOT unit moved up to the 8th floor on Tuesday, so we got to be part of the hubbub of the whole deal. The HOT unit on 5 is being remodled and will open back up in the end of the summer. Maggie was lucky enough to have almost all of her favorite nurses working and taking care of her during this hospitalization. It makes things smoother and the time go quickly.

Last week, when Maggie was in Illinois, Betsy and I went used auto shopping and got her set up in a newer model than she had had. The very up-side of all of this is that she could come out to visit Maggie at CHW without relying on others for transportation. She came out last evening and snuggled with Maggie and they watched some nature shows on TV. We had watched the new movie "Marie Antoinette" in the afternoon.

I have the car unpacked, we had lunch, and Mags is having a snooze on the couch. Tomorrow we are going up to the shack for Easter. I have bulbs about to bloom in my garden, but it is snowing today. And 26 degrees. Maggie told me she is tired of winter. I'm happy to be home with all of it's comforts.

Thanks for checking in.
Happy Easter
Maggie and Cindy

Wednesday, April 4, 2007 3:23 PM CDT

Sunday and Monday were absolutely beautiful days here in the land of quickly changing weather. We had a wonderful family dinner on Sunday, with all of the family there. It was lots of fun for all of us. Tuttie thought that she got the space at the head of the table, but I overruled her, telling her that the deed to the house was in my name now. I always like to see the humor in things.

Maggie has been having some new pain in her leg, so we addressed alot of issues in clinic on Tuesday, prior to her admission. She almost wasn't admitted for the chemo, as her white count is elevated, showing that she might be fighting an infection. We are going to be keeping a close eye on this.

She got the first of the five doses of chemo yesterday afternoon. She is in the middle of the second dose right now. The orthopaedic oncologist came to see her this morning, and she had some pelvic Xrays this afternoon. Tuttie came out for lunch.

Thanks for all of the good birthday wishes. One of the nurses told Maggie she looks older. At what age does that finish being a compliment?? Uncle Phil was here yesterday afternoon, and will be here soon today. We are going to the shack for Easter dinner on Sunday if Maggie is feeling up to it. Chris was here last night. Thanks also to Paul for the flowers he planted in my front yard.

Now we have flurries and high winds.
Maggie and Cindy

Saturday, March 31, 2007 8:18 PM CDT

Maggie called early this afternoon, and said that the bus would be in early, at 3:15. I was there only a half an hour earlier than that.

She had a wonderful time. They met the Illinois governor, slept over at the Governor's mansion, saw the Illinois state government in action, toured the Abraham Lincoln library and museum, swam, went to an arcade and had lots an lots of fun. Memories, friendships, caring, being "normal". That what camp is about for Maggie. I am so glad she was able to go on this trip.

Today is her 14th birthday. I guess that they celebrated all week. She had cake, presents, cards, the whole bit. Tomorrow night everyone in the family is coming here for a birthday dinner. Maggie picked the menu; we are having Parmesean Chicken, mashed potatoes, and green beans. Chris and DeAnne are bringing the birthday cake.

Tuesday we go inpatient at CHW for 5 days of chemo.

It's good to have my warrior home.

Maggie and Cindy

Monday, March 26, 2007 3:20 PM CDT

Maggie and I were up bright and early this morning and she is off on her trip to Springfield, IL with One Step Camp. We got her checked in for the trip with one of the nurses going, and chilled for a bit with some of her friends, but I left before the bus came. (She wanted me to go)

Saturday she got a transfusion of platelets at CHW to get her in the best shape possible for her trip. She was very excited last night, I know I was asleep before she was.

Yesterday, she spent the afternoon with one of her girlfriends here, and in the evening we packed. Both yesterday and today are gorgeous, weather wise. Rain is in the forecast for later this week, but I doubt Maggie will even notice.

I'm having dinner with family this evening. Lots of stuff to do this week, but mostly just regroup.

Thanks for checking in,
Maggie and Cindy

Thursday, March 22, 2007 8:11 PM CDT

Maggie got the okay in clinic that if she remains symptom free she can go to Springfield on Monday with OSAAT!! This is very good news for her, as we had worried with the positive RSV this weekend that the trip would be off. They feel she was just finishing shedding the virus, and as her counts are rebounding and she has no symptoms, she can go. The bus leaves at 10 AM from CHW.

Since she got home from the hosptial on Monday, we have just concentrated our efforts on getting well enough to go on this trip. This involved lots of high counts dances and many emails to her friend Emily from camp who is also going on the trip.

I have managed to finish up the painting and other work I was doing on her bathroom, and she has moved all of her girly stuff back in there and is enjoying the waterfall showerhead I installed as I write this entry.

Lots of family visits the last few days. Chris was over this evening to finish putting a handrail in by the back door.

Today was sunny and warmer (60's), so we drove home from CHW along Lake Michigan.

Maggie informed me a couple of hours ago that "I am going to school tomorrow."

Thanks for checking in
Maggie and Cindy

Monday, March 19, 2007 6:01 PM CDT

Maggie continued to do the no-fever dance, and added the white count dance to show the nurses on 8. And it worked. She got a unit of platelets this afternoon, and we came home about 5:00.

We got word yesterday that she is still carrying the RSV virus. Unable to know if that is current or from the previous time and she has been unable to shake it due to her overworked, decreased and stressed out immune system.

We have to go to clinic on Thursday to check counts and get an okay for the trip next week.

Great news to hear the WFBMS Forensics team won the state competition on Saturday. I'm bummed about the Badgers losing in March Madness on Sunday.

It's great to be home. It's back in the 50's and the sun is out.

Thanks for checking in, and for all of the good thoughts.
Maggie and Cindy

OH!!! Happy Belated Birthday to Julie Schleck.

Sunday, March 18, 2007 10:35 AM CDT

So, Friday, when we came out for labs, Maggie needed a platelet transfusion. Quick and easy in clinic. We stopped at the Middle School on the way home to make plans for her to go to the state Forensics competition as a worker on Saturday.

Then Saturday morning she wakes up feeling lousy and working on a fever. We did the no fever dance, drank lots of water, but to no avail. By afternoon we were in the ER at CHW and she was admitted last evening. The HOT unit is bursting at the seams, so she is on the 8th floor, which is HOT overflow. Newly remodled, this spot used to be HOT clinic. She has had lots of cultures done, and got two units of blood last night. Still feeling pretty lousy. And very worried she won't be able to go to Springfield next week. My thoughts are we'll only be here a couple of nights, max, and when here white count rebounds from the last chemo she'll feel better and be roaring to go.

Thanks for checking in.
Maggie and Cindy

Thursday, March 15, 2007 8:55 PM CDT

So much for our great weather. It is in the 30's again, but the sun was out today.

Maggie went to school Tuesday and Wednesday, and tried this morning, but I had to pick her up at 10. She was nauseous, lightheaded and just feeling terrible. Nothing that a 2 and a half hour nap didn't help. Her labs on Tuesday were excellent, and we go tomorrow again. I think we will go in the morning before school.

I've been productive too, it must be the spring like weather.

Maggie goes to Springfield, IL with her camp the last week of the month for a trip to teach about advocacy and government for the cancer survivor. She and her camp friends have been busy emailing plans for the trip.

The Tuesday after she returns (April3) she goes back in for another cycle of chemo. She will have scans done sometime after that cycle.

Thanks for checking in
Maggie and Cindy

Tuesday, March 13, 2007 7:51 AM CDT

The sun is out, it's already 50 degrees, and Maggie is at School. She had her mind made up yesterday that she was going to go, and visits from some friends in the evening only reinforced that that was where she was going to be today. We've been doing the no-fever dance, and it must be working. We go out to CHW for labs after school today.

I have been getting some of the painting stuff done, but have to take a break to get my taxes ready for the accountant today. I'm going to jump right into them after I sign off so that hopefully I can play a little today too.

Maggie and Cindy

Saturday, March 10, 2007 3:33 PM CST

It's always so nice to be home. After Maggie gets her port de-accessed and she is in her wheelchair and we have left the HOT unit she and I always sing "Born Free."

We had a great surprise this morning, before we even were awake, when Betsy came to visit on her way to teach a class at the Cheesecake Factory at Mayfair. She came back after she was done, and then came home with us for lunch.

Lots of family visitors in the hospital all week. Tuttie made it out twice. Uncle Phil stops in every day on his way home from work. Plus Chris and Betsy. Maggie had two of her most favorite nurses last night, and we were out the doors at noon today.

I've already looked through the mail, patched some plaster upstairs so that I can hopefully start painting tonight, and basically just blissed out on the fact of being home.

Maggie will be going to Springfield, Illinois with her camp at the end of March for a trip about goverment and advocacy for the childhood cancer survivor. So her next round of chemo will be postponed by a week again. After that round she will have scans to see where things are at.

So, hopefully, no visits to CHW until next week for labs. She is beat this afternoon, and is resting on the couch in the living room. I think I'll go light the fire for her.

Thanks for checking in
Maggie and Cindy

Wednesday, March 7, 2007 3:35 PM CST

After a fortifying breakfast at our favorite place, Jo's Cafe, Maggie got admitted for her chemo yesterday. We ate huge plates of yummy breakfasts, pancakes and sausage for Maggie and eggs, hash browns and bacon for me. That is one of our favorite ways to start an admission, with good food at a place where everyone is so friendly.

Maggie got her chemo at 7 last night. They are hoping to move it up by 3 hours every day so that we can get home by a decent time on Saturday.

Yesterday we had big fluffy snowflakes, but today the sun is shining. I went to Sam's club this afternoon to pick up some needed things, and snacks for the nurses, too.

Phil and Chris were here yesterday, and Tuttie was here for lunch today. Maggie has already done some art projects with Ann.

I talked to Susie about Maggie's fatigueablity (sp?). She is going to have a PT evaluation and get set up for for outpatient PT while we are here.

I brought a bunch of Maggie's new pictures with me, and have given them all out already. She is one popular lady.

Thanks for checking in
Maggie and Cindy

Monday, March 5, 2007 9:02 PM CST

Maggie just looked at me and said, "Are we packed for the hospital yet?" Not to worry, I have the laundry done, and a list I keep of all of the essentials. We are due to be there at 11AM tomorrow. I hope she is healthy enough to get her chemo.

We did finally bust out of the house on Friday for a little road trip to the outlet mall in Kenosha for about an hour. Then spent the rest of the weekend at home. Tuttie was over for pancakes yesterday. Lots of other family visitors.

Today, Maggie went to school for the first time in over a week. This is the only day she will get there this week, so she stayed after for art club, and made a full day of it. Our excitement for the evening involved Uncle Phil and I helping a neighbor get his car out of his driveway, it had been snowed and iced in for a couple of weeks. Phil and another neighbor were pushing, but they needed my sheer body mass involved to get it free.

It is cold again here, but sunny. That makes all of the difference in the world.

I just had to post tonight to thank everyone again for all of their good wishes and to share Maggie's photo with everyone.

Stay warm
Maggie and Cindy

Wednesday, February 28, 2007 7:55 PM CST

Would you look at all the messages of support in the guest book. Maggie and I are floored. Thank you all very much.

We had a quick little visit to CHW on Monday for labs. Maggie's counts have recovered enough from the last chemo that if she didn't have this nasty RSV she could have had chemo this week. Both sound icky to me. She has been home from school all week, and won't get there tomorrow with the virus. She has a rotten cough and big time head cold. Our goal for the week has been to keep Tuttie and Cindy from getting the virus. Because Uncle Phil works with this age group, we probably would be asking too much to keep him healthy too.

Betsy was over Monday and Tuesday evenings, and Uncle Phil has been by also. Tuttie dropped in this morning. She said she couldn't drive by the house and not stop in. I rewarded her with banana bread and a cup of coffee. She and Maggie sat on opposite ends of the living room and talked.

I finally got my butt in gear about getting the bathroom painted today and did some prep work. Sanding, hardware removal, etc. Which led to me getting some more boxes in the basement unpacked.

Let's get Maggie healthy enough to get her chemo next week.

Thanks for checking in.

Maggie and Cindy

Sunday, February 25, 2007 5:44 PM CST

Thanks for all of the support. Maggie is still fighting the RSV, has spent all of the weekend lazing around. She has a nasty cough and lots of congestion. But, knock on wood, no fever. She is busy drinking her water and watching the Oscar fashions on television.

Friday night we had a nice girls night. Betsy cooked my chicken and dumpling recipe so that she could master it, we watched a movie, and had snacks. She made pancakes for us in the morning which was great to come in to, after I had finished using the snowblower.

We didn't get as much snow last night as we were supposed to, but got a nice layer of sleet on top of the snow this afternoon.

No school for the beginning of the week for Miss Maggie. We have to go to CHW for labs tomorrow.

Maggie and Cindy

Friday, February 23, 2007 3:11 PM CST

Welcome from the house of a bummed-out 13 year old. Susie called a couple of hours ago to say that Maggie's cultures are positive for RSV. It is unsafe for her to travel and for other immunosuppressed kids to be with her.

Maggie handles most bumps in the road well, but this is a huge dissapointment for her. The counselors, her peers, the staff at the National Abilities Center, the volunteers; all come together to make this trip a time in her life where being an amputee and having cancer aren't so unusual.

I don't let myself indulge in anger too often, but I'm there today. Not about the fact that she can't go on the trip as much as the basic fact that she has cancer.

Tonight Maggie will get some TLC from her mom and big sister. We are having a sleepover here. I just went out and bought some snacks. Always have snacks.

Maggie and Cindy

Thursday, February 22, 2007 8:01 PM CST

Last night, we had a great dinner with Tuttie and Uncle Phil. Maggie was feeling punky and had a sore throat. When we got home she decided to spike a fever to 102, so at 10:30 last night we were at the ER at CHW. If it is an unscheduled trip to the ER, I don't think it qualifies for spa designation. She got some fluids, blood and throat cultures, and some platelets. Because her hematology work showed that her white count was on it's way back up, we didn't have to be admitted, and we were back home by 4:15 AM.

Slept in a bit this morning, and then a fever spike again, so off to clinic for nasal-pharyngeal swabbing for the flu, more fluids, more bloodwork, and a dose of tamiflu.

Susie thinks that Maggie may have the flu, but we won't have the results of the nasal swab until tomorrow mid morning.

All of this throws a huge monkey wrench in Maggie's planned trip with camp to Park City, Utah on Saturday. I am in the process of trying to get ahold of the leader of the trip to let him know that Maggie may not be able to leave on Saturday. Susie thinks that it may be possible for Maggie to join the group later in the week. We are doing all that is possible to get her healthy enough to go. We also have to take into account that alot of the other campers are immunosuppressed, and protect them from anything Maggie may have.

So, lets get some good karma working to get her well enough to go, and that she doesn't have the flu. Time will tell.

Betsy, Uncle Phil, and Chris were all here this evening. Thanks to Phil for running to the pharmacy for a script for Maggie. He's the best brother in the world.

Maggie and Cindy

Wednesday, February 21, 2007 11:14 AM CST

So we were off to the spa bright and early on Monday, where Maggie got a transfusion of 2 units of red blood cells. Her platelet count was on the borderline, so we got to skip those. Mags had a nice long snooze during the transfusion (slumber therapy?) and I read a book.

Yesterday she got to school but felt crappy all day. Did she call me for an early ride home? No, she said she slept during her study hall. Sounds good to me. She went to her sewing class in the evening, but came home with such a headache she got sick to her stomach. But off to school this morning.

Tonight we are meeting Uncle Phil for dinner with Tuttie at Eastcastle. He has had parent-teacher conferences the last two nights so we haven't see him since Sunday. Tomorrow after school a trip to CHW for labs, and then if she needs any interventions, they will do them on Friday.

Betsy was able to get her schedule at work changed, and she will be going with us to O'Hare bright and early on Saturday morning. Maggie is thrilled about this. Me too.

Thanks to all the lurkers for signing in, it makes both of us smile to see old and new names.

Maggie and Cindy

Sunday, February 18, 2007 11:32 PM CST

So we spent Friday out in Tosa, at the spa (CHOW) so Maggie could get some platelets. She wasn't too symptomatic as for her red count, so we're doing the wait and see. By Friday evening I knew she should have gotten the blood. Saturday she had a hard time getting up a flight of stairs, had a headace, and winded easily. All signs she needs a transfusion. So we will be at CHW bright and early tomorrow morning.

But we did get to fit in a few fun things this weekend. We went to the movies on Saturday and saw "Because I Said So." and today we had lots of visitors. Tuttie was here for pancakes and the afternoon, Phil was here, Susie (Maggie's Nurse Practioner) stopped by and Chris was here this evening. I need a new hot water heater. I had to get one for the old house about a year ago. Nothing I want to do on a yearly basis. Chris will take care of this tomorrow for me.

Maggie leaves for Utah on Saturday. I had my dates wrong and thought it was on Sunday, big surprise this evening when I re-read the letter. I think I know where most everything she will need for the trip is.

I plan to strip the wallpaper in the main bathroom while she is gone and paint that room. I went to the library today to get some books on painting and repairing plater walls. I have only ever worked on sheetrocked walls before.

Tomorrow is supposed to be in the high 30's. The first time over freezing in Feb.

Hopefully Maggie can get some days in at school this week.

Sing in you lurkers!!!!!
Maggie and Cindy

Wednesday, February 14, 2007 9:28 PM CST

As I was going through my email this afternoon, I got this picture forwarded to me from Maggie's science teacher. They do bear a striking resemblance to each other, don't you think? When I picked her up from school this afternoon, I asked her if there was any reason I would be getting emails from Mr. Yannish. It was great to make the teenager squirm for a minute.

We had a couple of inches of fluffy white light snow last night. It is beautiful here. Maggie didn't get to school on Monday, but has been there yesterday and today. Tuttie was over early this afternoon, and Betsy and Chris were here this evening. Maggie had a valentine's card and gift for me this morning first thing when we got up.

Tomorrow we go out for lab work after school. Her color has been really good so far this week, so I'm hoping to skip at least the red cells on Friday, but this chemo has been so hard on her platelets that I bet she has to have a transfusion of those on Friday.

A week from Sunday she goes to Utah for a week with Camp One Step to ski with the National Abilities Center, have fun, and be with her peers. The best medicine for Maggie is Camp.

It's about time to ask the lurkers to sign in.

Happy Valentine's Day
Maggie and Cindy

Sunday, February 11, 2007 7:11 PM CST

I updated last evening, it must be lost in cyber-space somewhere.

We got home from the hospital about noon on Saturday. Even though we had some nice spa treatments..... Hydrotherapy (a shower), IV therapy (chemo), and solar therapy (sitting in the sunlight on my bed there), it is nice to be back here. Maggie wore her robe all yesterday evening and today. She had to show it off to our visitors today.

Tuttie came for pancakes at noon, Betsy was here for part of the afternoon, and Phil was here for a wonderfully long visit this afternoon also. Maggie's favorite part of the day was when I had too much coffee (as if there is such a thing) and told the girls and Phil some story about a final exam in college where I fell asleep. They loved the story, but Phil pointed about that perhaps I shouldn't have had that last cup of joe.

So I've gotten the laundry done, made a pot roast we had for supper, and glanced at the mail. Tomorrow will bring some more chemo mom duties and hopefully school for Maggie. She has art club after school on Mondays and hates to miss it.

It remains cold here.... I'm glad I bought a new car battery this fall.

Thanks for all of the support.
Stay warm
Maggie and Cindy

Thursday, February 8, 2007 10:42 PM CST

This evening, a hospital messenger brought us a basket of spa goodies that had been dropped off for us. Hence..........This quote from Maggie "Thank you, you wonderful people whoever you are. I love all my spa goodies and especially the robe with a heart and my name embroidered on it. Mom had to tear the robe off of me at bedtime. I just want them to know I am so grateful to have such wonderful people who care about me."

Maggie and I appreciate all eveyone does for us. I sometimes get overwhelmed by the kindness of people. I told Maggie that she inspires people because she is so brave. She said she doesn't feel brave. I know differently.

So, day 3 of chemo is over. She did some art projects with Ann; 2 stepping stones, some Chinese lanterns and other projects. I skipped out of the hospital for a bit and went to the Home Remodeling show at State Fair Park. It was senior citizen day so I felt very young.

Phil and Chris were here this evening. It's about time to hit the hay. Still cold here, but sunny... a high of 17 today.

Stay warm
Maggie and Cindy

Tuesday, February 6, 2007 7:50 PM CST

Can you believe how cold it's been?? School was cancelled on Monday due to the low temps. Sunday Maggie and I stayed in our jammies and in the warm house all day.

School was cancelled today too, but we were off to CHW bright and early this morning. Maggie had an 8 AM appointment in the lab. Then breakfast in the deli and clinic at 9:30. Maggie got her chemo in clinic and we were admitted to the HOT unit at 2PM. Uncle Phil stopped by on his way home from work. We're watching American Idol right now.

Last night the whole family got together at Pandl's in Whitefish Bay for Phil and Tuttie's Birthday dinners. In spite of the frigid weather we all had a delightful time.

So we're at the spa until Saturday. Maybe it'll warm up a little by then.

Stay warm,
Maggie and Cindy

Sunday, February 4, 2007 12:54 AM CST

When I took Maggie to her 7AM bus for her forensics tournament yesterday, it was four degrees out. Today, at noon it is -3 degrees. I started baking a little bit ago. This house has radiator heat, and seems much warmer than our old house. Plus the sun is out and shinning brightly on the snow. A good day to stay inside and count my blessings.

Maggie went to school every day this week, except for Monday when she got platelets. Her counts were good on Thursday. Hopefully her platelets will be good enough on Tuesday to start the next cycle of chemo.

Yesterday was Tuttie's 80th birthday. Betsy, Maggie and I had a delightful dinner with her at Eastcastle last night. We go out for a family dinner on Monday to celebrate her birthday and Phil's. It is still supposed to be very cold on Monday.

Maggie is sort of bummed about having to go back to the "spa" (CHW) so soon. Last time I didn't bring enough diversionary activities for both of us, so I have been planning ahead. I got some great yarn, and will pack the laptop also.

Thanks for checking in on us.
Maggie and Cindy

Monday, January 29, 2007 5:01 PM CST

BRRR...........it's cold here. When we headed out to CHW this morning Maggie put a coat, scarf and gloves on. Thirteen year olds sometimes think they are invincible and don't have to dress for the weather. It is very blustery in the parking structure which adds to the fun.

Maggie got a big old bag of platelets this afternoon. I had forgotten our bag of entertainments so we just watched TV and Maggie got a snooze in.

She was up bright and early on Saturday for the Forensics meet in Oconomowoc. Sunday Tuttie came for lunch and a visit, and then Uncle Phil came. I celebrated the cold snap and the fact that we got more snow on Sunday by firing up the grill and cooking out.

Maggie plans to go to school tomorrow. I have plans for coffee and a haircut. She has to go back to CHW for labs on Thursday. Then planned admission on next Tuesday for 5 days of chemo.

Stay warm
Maggie and Cindy

Thursday, January 25, 2007 8:51 PM CST

As predicted, Maggie did need blood products today along with her trip to clinic. She got 2 units of packed red blood cells and a unit of platelets. Her white count is non-existant, so we are busy doing the no-fever dance. Maggie is sitting next to me chuging some water to ward off a fever as I type this.

So we had a 9 hour round trip to CHW today. Maggie did get to see Ann the art therapist and lots of other people on her team today. We made Valentines and Maggie made a bobble head doll with Ann. And we watched a movie and chatted with lots of friends.

Tuesday night was the choir concert at the High School. Betsy and Peter went with me, and Chris and DeAnn were there also. The concert was so good.

Saturday Maggie is planning to compete for the Middle School in a forensics competition at Oconomowoc Middle School. The bus leaves at 6:30 in the morning. EEK!

Next lab work is on Monday. Earlier if we have to hit the ER this weekend or if Maggie is symptomatic.

Stay warm
Maggie and Cindy

Tuesday, January 23, 2007 0:08 AM CST

HAPPY BIRTHDAY UNCLE PHIL!!!!!

So today, Tuesday is Phil's birthday. All I need to say about age is that he is older than I (Cindy).

We will celebrate his birthday with Tuttie's in the beginning of Febuary. Maggie has a choir concert tonight.

She went to Chris and DeAnn's for brunch on Sunday and saw all of her step-sisters. It was good for her to get out of the house. Today she went to school and lasted the whole day. I did some chemo mom activites.

Next appointment is Thursday. They had us make it for the morning, and to plan to stay for blood products. Pack a movie and snacks.

We had lots more snow on Sunday. It finally looks like January in Wisconsin. I guess we're having a cold snap the middle of the week too.

Keep Warm
Thanks for checking in
Maggie and Cindy

Friday, January 19, 2007 8:10 PM CST

At 1:30 this afternoon, Maggie got her port deaccessed after finishing this latest round of cytoxan/topotecan, she hopped into her wheelchair, and out the door we were. The sun was shining so brightly that I had to wear my sunglasses to drive home, and we had the sunshade for the sunroof open in the car. Maggie said it was great to be outside. We had some more light snow over the week, so it is white and bright outside.

I must have asked her 25 times during the hospitalization if it was better being inpatient than doing the chemo outpatient. She finally got so tired of me asking the question that she decided she will let me know next week. So the jury is out for awhile.

We had a great surprise from Maggie's Spanish class while she was inpatient. They sent dinner out for us and a great card. Very Yummy Nachos. We had HUGE plates of them and then gave the rest of the box to the nurses who loved it also. I know how important it is to feed the nurses. They are so wonderful.

Maggie spent lots of time with Ann, the art therapist. We all made lots of fun things with Model Magic. I am great at making snakes. I think that is because they are so easy. I don't have an artistic bone in my body. Both Betsy and Maggie are very artistic.

Tuttie came out to the hospital on Wednesday. Her arm is getting better, but she is still in the sling. We ran into Maggie's orthopaedic surgeon in the cafeteria, and he just shook his head in disbelief.

Lots of kind people came by to see us. The psychologist, child life, lots of family visitors. Uncle Phil, Betsy and Tuttie were all here this afternoon. We had a fire in the fireplace and I went to the grocery store to get stuff for the weekend. And three new movies from Netflix....how great.

Have a good weekend.
Stay Warm
Maggie and Cindy

Tuesday, January 16, 2007 1:19 PM CST

Hello from CHW. Maggie was admitted yesterday for her chemo cycle. They are getting ready right now to hang today's dose. Every day they move the chemo time up by two hours, so she should be done Friday morning. And barring any other problems, we should be home friday afternoon or evening.

The PET and MRI scan results show no new tumors. Yeah. The previously treated tumors are still there, but are decreasing in signal intensity. Good news.

We also worked out with Susie the next chemo cycle should be in three weeks, and then we will delay the cycle after that by one week so that Maggie can go on the ski trip to Park City with OSAAT.

Last night we watched the Golden Globes on television. Uncle Phil stopped by on his way home from work. Chris came out this morning, and a friend of mine stopped by with lunch for us. Maggie still has an appetite, and she was eagar for hers. Sunday evening Maggie went with Betsy to see Dreamgirls.

Thanks for all of the support. It means alot to us.

Maggie and Cindy

Sunday, January 14, 2007 3:34 PM CST

Winter made a little appearance last night, about an inch of snow, along with colder temps the last few days. We are supposed to get a moderate snowstorm tonight. I'll get up early, as we have to go to the hospital to start chemo tomorrow. Maggie requested last week that week we go inpatient for the treatment this time. Whether or not that is possible or practical we will know tomorrow. I will pack bags tonight to take with us to be on the safe side. Plus you need things to do while having chemo.

Maggie got to school every day she could last week. We were at CHW all day on Friday for the PET scan and the MRI. Susie called in the evening on Friday with the preliminary results from the MRI. The dictated report said that the enhancement from the previous tumor is stable. The PET scan will not be finished being read until sometime the beginning of this week, and is more definative.

Tuttie came over during the day on Saturday, and then I took her car out for emissions testing and filled it up with gas for her. It is diffucult for her to do these things with her sling on. She and Maggie had a nice visit while I was gone. Maggie and I went for a late lunch/early dinner at the Cheesecake Factory in the afternoon. So we could see Betsy.

Today Maggie is laying low, sad about starting the IV chemo again tomorrow. It's hard to anticipate something that will make you feel so crappy.

OH!!! Maggie got asked to go on the One Step At A Time ski trip to Utah in the end of February. WOO HOO. We will do all we can to get her there.

Thanks for checking in and signing in.
Maggie and Cindy

Tuesday, January 9, 2007 8:26 PM CST

We had a great Friday evening, hitting the mall, seeing people we know, having dinner. Bayshore has been remodeled, for you out-of-towners, and is now a huge shopping "Town Center", with lots of restaurants. Streets in the middle, like the BayShore of my youth.

Saturday, Maggie had one of those days where you don't get out of bed until the afternoon. Not because she was feeling good; lots of pain and fatigue. I was worried that she had overdone things, what with school for the week and our hijinks at the mall. We had a fire in the fireplace in the evening, and were sitting and talking when we noticed she has a new and sore bump on her head. Thats a worriesome thing when you have had a tumor near there before. Maggie is already scheduled for a PET scan this Friday. I talked to Susie this morning and let her know the recent devlopments. She wanted to see Maggie today, but Maggie wants to wait until our regular appointment next Monday, so that we can have the scan results and so she can get some school in this week and prepare herself physically and emotionally for the week of chemo next week. If Maggie or I want to see her this week, Susie said that she will get us in right away. We will be at CHW all day Friday for the scans.

Today, after school, Maggie and I did the drive to CHW for her labs, which are good. We came home and had one of her favorite suppers, Hamburger Stroganoff. Uncle Phil came and dined with us. Then homework and now she is in the shower. I just finished paying bills, and will head up in a few minutes.

So lots of good thoughts and prayers, karma, and everything else for Friday and Monday.

Thanks bunches.
Cindy and Maggie

Friday, January 5, 2007 2:24 PM CST

Another full week of school (not counting leaving early or arriving late due to tiredness). What a great achievement. And I've been able to do some normal mom type nagging about picking up one's room and getting the homework done. How sweet is that. Labs on Tuesday were good, no blood products needed.

Tuttie also had a doctor's appointment on Tuesday. He feels she will be able to get the mobility she had prior to the break back without surgery. The shoulder right above the break has been troublesome for years, and Tuttie has been trying to avoid having a shoulder replacement. We saw the doctor on Tuesday that she had seen for this shoulder before.

I'm not sure what the weekend has in store. Maggie has some gift cards burning a hole in her pocket. She has had them since Christmas, and due to camp and school has been unable to spend them!! There are lots of good movies out. The weather here has been unseasonably mild. Right now it is 51 degrees.

Maggie has a PET scan and an MRI scheduled for the 12th of January, one week from today. She is scheduled to start chemo on the 15th. Labs on Tuesday the 9th.

Thanks for checking in.
Maggie and Cindy

Sunday, December 31, 2006 10:27 PM CST

Maggie is home from camp. She was able to stay awake for most of the car ride home, but fell asleep as we hit downtown Milwaukee. She had a wonderful time. They celebrate New Years Eve on the night of the 30th with a dance and then a movie marathon, and everyone camps out in the big gathering room of the One Step Lodge. I saw lots of her friends at camp when I went to pick her up. Kids in all stages of treatment, from all over Southeastern Wisconsin and Northern Illinois. They did go skiing and doing winter sports at the Grand Geneva Resort. Maggie played cards, did crafts, lots of talking and hanging out. They unfortunately don't have the adaptive skiing equiptment that she uses when she is Utah.

They also went to a waterpark one night, a minor league hockey game in Chicago and lots of other things she can't even remember right now.

Today was a number of naps, a trip to the fabric store for an upcoming sewing class, and some TV. It's nice to have her back home. We are going to Eastcastle to have lunch with Tuttie tomorrow. She is eager to see Maggie. Her arm is healing very slowly. She has an appointment on Tuesday with the orthopod.

Maggie does not have a scheduled appointment at CHW until the 12th, except for lab work. She does have a cold. We are going to do the no fever dance for good luck tonight.

Have a safe and Happy New Year.
Thanks for checking in on us.
Maggie and Cindy

Tuesday, December 26, 2006 4:55 PM CST

As usual, I am putting a new entry in the journal to delay doing something productive. In this case it is to get Maggie packed for camp. It will probably only take a half an hour or so, as we have all of the essentials here in the house. Cameras, film, makeup, clothes, mad libs, lots of paper and drawing stuff. She got a sleeping bag and small suitcase from Tuttie for Christmas that can hardly wait for a trip to Lake Geneva.

We went to clinic this morning and Maggie started the chemo that she is getting this week. She will be taking 5 days of Etoposide. We stopped and filled the prescription at the pharmacy, and she had today's dose around 1pm. Her counts were very good this morning. She will have to get blood drawn on Jan 2 to see how the chemo affects her. In three weeks we will go back to the IV Cytoxan/Topotecan. Right before the next chemo they will do scans to see what is going on.

We had a great Christmas celebration with the family on Friday. Christmas Eve Maggie and I had dinner with Tuttie at Eastcastle. I went there on Christmas Day while Maggie and Betsy were with their dad and DeAnn and stepsisters.

Tuttie continues to have huge amounts of pain from her broken arm. She will be seeing an orthopaedic surgeon tomorrow. Unfortunately, I will be unable to take her to the appointment, as that is when I have to deliver Maggie to camp.

Maggie is due home from camp on December 31st. I pick her up at 8:30AM, and if I remember correctly from last year, she will have been up the whole night before, and will sleep all the way home in the car. I don't think she gets alot of sleep at camp in general. Too much fun. Let's hope she doesn't get the respiratory infection she usually gets while she is there.

Have a happy and peacful New Year.
Maggie and Cindy

Friday, December 22, 2006 1:46 PM CST

I just went to type this new entry, and for the life of me I couldn't remember what the password was for me to get on to be able to do that. I think I haven't had enough coffee today. Perhaps I will remedy that in a minute.

Maggie got to school today, a little late, but there. She loves school, but so many days her body just won't that little mind of hers get there.

Wednesday night, after the drama of the morning, taking Tuttie to the ER and all, I had a wonderful visit from some of my dear friends at work. Not being able to go to work is very hard for me. I miss the job (Intensive Care Nurse, Night Shift), I miss my co-workers, I miss the money, and I miss the intellectual stimulation. My friends brought a beautiful gift basket filled to the brim with things for Maggie and I. It is very hard for both of us to accept help from others. I have to say from the bottom of my hear Thank you all so very much. We love all of you.

The best part of the girls coming to visit was that they stayed for a little bit and drank some wine and talked. I have never had a problem with either of those two activities. It was a VERY fun night. Just what Maggie and I needed. I felt like I was surrounded by love.

Enough gushing.

I have some errands to run, and then the family comes here tonight for dinner. Some of Maggie's friends are coming over after school for a bit.

Merry Christmas
Maggie and Cindy

Wednesday, December 20, 2006 5:46 PM CST

I am so glad that Maggie had such a good week last week. A bright spot in our travels. She came down with a cold on Sunday, and has been unable to go to school this week, as of yet.

Monday we went to clinic. Surprisingly, her counts had rebounded enough to get chemo, but we had already made the decision to postpone for a week, so that she can go to winter camp next week, and not have to come back to Children's for blood products. She will be taking an oral chemo agent next week, starting on Tuesday, and will be taking it at camp. Camp is the 27th through the 31st, and is held in Lake Geneva. She is really looking forward to this. She will have two weeks off of chemo after this week of chemo, and then will resume the IV chemo. It is so important for her to go to camp, and I am glad that Dr. Warwick and Susie can re-arrange her chemo so she can attend.

Yesterday was mostly hanging around the house. Uncle Phil was over in the evening so that I could walk over to the mall to get closer to finish my Christmas shopping.

This morning I got a call from Tuttie that she had fallen during the night and broken her arm. I went down to Eastcastle this morning and took her to the ER at Columbia. She has broken the top of her humerus, the bone in the upper part of her left arm. Do you think our family has orthopaedic doctors on call? She is in a sling, got pain medicine, and is back at her apartment. They feel it will heal well, and we don't have to go back to the doctor until Jan 2 unless she has some problems.

We are having our family Christmas celebration on Friday night, because Phil and Paul go to Florida on Saturday. Of course we will be getting together for Christmas Eve, and the girls will be going to Chris and DeAnn's for Christmas Day.

Stay warm.
Merry Christmas
Maggie and Cindy

Saturday, December 16, 2006 4:08 PM CST

Here I am, at the computer, with a big smile on my face. Maggie has had a great week. She got to school all five days, and only had to leave early on Tuesday for a clinic visit, and on Friday, when she was just plain worn out. But in a great way. On Thursday I met with her guidance counselor and the principal to review her educational plan for the rest of the year.

In clinic on Tuesday we discussed with Susie and Dr. Warwick upcoming chemo plans and how they would mesh with Winter Camp. So there a couple of things we may do to assure that she gets to camp. It is at her regular camp in Lake Geneva between Christmas and New Years. I'll post more about the chemo plans when we finalize them.

We also got some Christmas baking in, and Maggie got to use the new set of cookie cutters she got as an end of radiation present from the techs. We are going to do more cut out cookies tonight.

Right now, Maggie is over at Bayshore with two girlfriends. They pushed her wheelchair over and I will go pick them all up in an hour or so.

Her burns are almost all healed. She said they aren't painful anymore. To temper this great week is a new area of swelling on her ankle. We have an appointment on Monday morning in clinic.

Lots of visitors over the last few days. Maggie awoke from a snooze on the couch yesterday afternoon to a Betsy visit, the very best medicine in the world.

It is very mild here. Temp 49, but cloudy. Now that I said that it will probably storm.

I think I'll go pick up the disaster area that is my kitchen. Maybe put laundry in too, for added fun on a Saturday night.

Maggie and Cindy

Monday, December 11, 2006 7:57 PM CST

Maggie and I are having "Friends" therapy right now. It is one where they are imagining their lives if they had made different choices. I love those.

Friday, Maggie ended up getting two units of blood and a unit of platelets. We were at CHW for the whole day. It is amazing how much energy she gets from the transfusions. Saturday it was go, go, go all day. We went over to Bayshore and had lunch at Cheesecake Factory, so that we could have the best waitress in the world (Betsy), and then we did some Christmas shopping. We ran into a couple of old friends. We saw a friend from CHW and his mom. He got a mohawk haircut at camp this summer, and I wanted to see the progress in growing out. Not bad.

Sunday, Tuttie came over and spent the day so that I could do some more retail work. She and Maggie watched the Packers win and wrapped some gifts. Uncle Phil stopped over in the evening.

Today Maggie went to school!!! Susie said that even though her white count is really low, the highest risk for infection is from her own germs. She was very exhausted at the end of the day, and came home and had a nap. Betsy came over for dinner.

Tomorrow, Maggie wants to go to school in the morning, and then we have a visit for labs and clinic at CHW in the afternoon. I think she may need some more blood products this week.

I did some housework today and then met a friend for coffee. I have always felt that coffee is a major food group.

It has warmed up a bit. Enough to get some of the ice out of the driveway from a few weeks ago.

Stay warm. Thanks for checking in on my brave warrior.
Maggie and Cindy

Thursday, December 7, 2006 8:27 PM CST

WOO HOO! Radiation is done! Maggie and I got there this morning for her treatment at 11:45, after stopping at CHW for blood work, and they did the final treatment. Maggie and I took two trays of homemade cookies to the wonderful people in Radiation Oncology. They are so kind and patient. They treat such a diverse population there, from infants on up, and they seem to make all of their patients comfortable and take care of them so well.

Tuesday Maggie had an appointment at CHW after her radiation. Susie talked to us about the next round of chemo. She doesn't think that Maggie's counts will have rebounded enough to get the next round of chemo on the 18th when she would be scheduled. So we may have to delay some in the process. Wait and see. Her next group of scans will be some time after the holidays.

Tomorrow, Maggie will be going to CHW in the morning to get platelets and red blood cells. Her counts today showed she needs those. They also told me that if she shows any signs of bleeding to bring her in right away tonight to the ER. Another good reason to stay in and lay low. Plus it is 14 degrees out and windy.

Betsy went with us yesterday for Maggie's treatment, and then came back here for sister time. Uncle Phil came over yesterday, as did Tuttie. Uncle Phil and Chris were here tonight.

Stay warm.

Maggie and Cindy

Monday, December 4, 2006 8:10 PM CST

It's snowing again here in Wisconsin. I just finished getting caught up since the storm last week, so that's okay. I went to the hardware store today and got some more snow melter and windshield washer stuff, so here we go.

Saturday brought two of Maggie's camp counselors to visit. They drove up from Chicago, and stayed for a number of hours. At first I thought that there were some dinasours dancing upstairs, but it was simply the girls playing a card game called Egyptian Ratscrew. When Maggie went to bed that night she told me her face hurt from smiling and laughing so much. How great is that.

Yesterday we had lots of family visitors. Betsy spent most of the evening here, and tucked Maggie in before she left. Maggie's burns on her legs from the radiation are getting worse, and she is in alot of pain. Radiation is scheduled to be done this week. The effects of the radiation continue for at least two weeks after the treatments end. So the burns will continue to get worse for awhile.

Consequently, no school today. Tomorrow is more radiation and labs and a clinic appointment in the afternoon. Uncle Phil and Tuttie both were here today. Uncle Phil, even in his walking boot for his broken leg, managed to do some things to help me. I'd be lost without him.

Right now, we are having some "Friends" therapy courtesy of TBS. We have all ten seasons on DVD to fall back on.

Stay warm.

Oh!!!! The lurkers term comes from the episode of "Friends" where they all are in Las Vegas and Phoebe has to deal with the little old lady lurker at the slot machines. My favorite character is Chandler (I think because he is such a smart-alek). Maggie can't decide right at this moment.

Maggie and Cindy
Sign in the rest of you lurkers

Friday, December 1, 2006 7:40 PM CST

Hmmm.I tried to update this earlier tonight, but lost the message in cyberspace. I am so glad that I found the snowmen background, because we got socked by over a foot of snow last night and this morning.

So, I was up early to go shovel a pathway to the car for Mags so we could go out to CHW and Froedert for treatment. As I put the garage door up, my neighbor, Judy, who has lived next to this house since I was in college, said "Do you need to get Maggie somewhere?". When I told her yes, 5 neighbors appeared with their shovels and proceded to shovel my driveway, sidewalks and front porch out. When I told Sheila, Maggie's social worker about this in clinic today, she said "it takes a village." How right she is.

On Sunday, 2 of Maggie's teachers from grade school came over to visit. Yesterday, a balloon and cookie boquet came from a whole group of teachers and staff from Richards School.

This week has been very hard on Maggie. I don't know if it is the chemo, the radiation, her burns from the radiation, the fact that she can't go to school as often as she would like, or all of the above. Visits from Nonnie, Betsy, Uncle Phil and Chris have helped. As has our usual "Friends" therapy.

Tonight we went to a Christmas party with Betsy at Eastcastle, Tuttie's new lodgings. It was wonderful. But it is always good to be home. It is 25 degrees out now. But the sun finally came out this afternoon as we were driving home from Froedert. It was beautiful with all of the new snow.

Tomorrow, 2 of Maggie's camp counselors are coming to visit. One of the infamous Peacocks, and Flip-Flop.

Maggie has been on continuous IV therapy all week. In a couple of hours I get to stop it and de-access her port. She is looking forward to that so she can sleep on her right side tonight.

I think that I need to ask the lurkers to sign in. Last night we watched the episode of Friends where that term came from.

Stay warm and dry.
Maggie and Cindy

Monday, November 27, 2006 7:16 PM CST

Whenever I am typing a long message on the computer, Maggie asks me if I am updating the page. I always ask for her input. Let's see if she has anything to say tonight. She says, "Hola." I can tell the eigth grade spanish is at work. She is wiped out from the visit with her grandparents, aunt and uncle. From how tired she was yesterday afternoon, I didn't think her counts would be good enough to get chemo today, but that shows you how much I know. She started her chemo this morning.

We were up bright and early and to the hospital for our 8:30 appointment, with labs, a practioner visit, hydration after her port was accessed, other meds, and then her cytoxan and topotecan. Plus darbopoetin and a flu shot, and then we were off to Frodert a little late for the 2:45 radiation therapy.

Then home, a visit with Uncle Phil, mom went to the grocery store, and then Betsy came over. Right now Mags is watching some TV while I check my email and update this.

Phil had hurt his foot on Wednesday up at the Shack, and he went to the doctor today, and found out that he broke a bone in it. He is in an orthopaedic boot similar to the ones that both Maggie and Tuttie have had. Never a dull moment.

Maggie had a great time with her visitors this last week. She slept most of the day in clinic today. Tomorrow she doesn't have to be there until 11:30. And radiation at 2:45 every day. She has a bad burn on her stump, so she isn't having radiation on it for a few days. She 8 more treatments after today. Woo Hoo.

Thanks for checking in on my brave warrior.
Maggie and Cindy

We also got some of the Christmas decorations up yesterday!!

Friday, November 24, 2006 6:17 PM CST

We had a very delightful Thanksgiving at the Shack, Phil's cabin near Manitowoc. The weather was beautiful, the ride to and from was uneventful, the company fun, and the food was tasty. Maggie and I made pies and spinach dip. In the above picture, Betsy and Maggie are taking turns whipping cream.

Maggie spent Tuesday night at her Dad's with her aunt Cathy, Uncle Mark, and Grandma and Grandpa who are visiting from Utah. They went to the Art Museum on Wednesday and then took her to her radiation therapy appointment. She went with them today, and she and Betsy are having a belated Thanksgiving dinner with them tonight and she is staying overnight again.

Monday we have clinic at 8:30, and if Maggie's blood counts have recovered enough, they will start her next round of chemo. The hair loss fairy has visited her again this week, and her curly locks fell out. This is always a difficult point in therapy.

I have been out and about a little in the last few days, and have run into so many people who wish Maggie and our family the best, and tell me how they remember us in their thoughts and prayers. Every bit helps.

Maggie and Cindy

Monday, November 20, 2006 6:47 PM CST

Maggie went to school today for the first time in a month. She made it the whole day, and is quite bushed this evening. I am very proud of her. I picked her up at the end of the day and we headed out to Froedert for radiation therapy, where Uncle Phil met us, and then home. I used my new grill again tonight, and Chris came to visit.

Saturday evening we went to see "Happy Feet" at the Fox-Bay with Betsy. It was cute, but I thought it was too sad in parts. Sunday Maggie went out for lunch with a counselor from her camp who came up from Chicago to visit. We had lots of other visitors on Sunday, with Tuttie, Uncle Phil, Paul, and Chris all here.

I put Phil to work and we got some stuff up to the attic, out for the trash, and other household stuff done.

Tomorrow is hopefully a morning of school for Maggie, with labs, clinic and then radiation therapy in the afternoon. She would be due to start more chemo the end of this week, but we decided to postpone until Monday. Hopefully, the chemo will be done outpatient in clinic.

We plan to go up to the shack for Thanksgiving.

Thanks for checking in. I forgot to mention that on the day we met Donald Driver, we had even more important visitors, when Jessie, a young Ewing's Sarcoma survivor we have known for many years came with her mother and sister to see us. She is in kindergarten this year. It meant alot to me that they came to see us when they were at CHW for clinic.

Happy Thanksgiving
Maggie and Cindy

Friday, November 17, 2006 9:46 PM CST

So nice to be home, running into people to give me hugs at the grocery store.

I forgot to mention that when Maggie was in the hospital this week, on Tuesday she got to meet Donald Driver, the fantastic Green Bay Packer. He donated his day off to come and meet the kids at CHW. He posed for pictures with all of them signed lots of autographs, held babies, and impressed me with his kindness and genuineness. He even came up to see some of the kids on the HOT unit who were in transplant isolation. A very memorable experience for all the people who were there.

Thursday we went out to CHW for labs, then kicked around Mayfair for awhile, and then over to Froedert for radiation. Today Maggie had a platelet transfusion in clinic, and then to radiation. We had great visits from Tuttie both days, and we saw Uncle Phil, Betsy, Chris and DeAnn this evening.

Maggie's bone marrow seems to really have taken a beating from this last chemo. Her white blood cell count as of Thursday was still only 0.3. We have a clinic appointment on Tuesday, and next week we are lucky enough to have radiation moved up to 4pm.

We have plans to go see a movie tomorrow with Betsy, and Maggie has a camp counselor coming on Sunday to see her. All of this is dependant on how she feels.

Right now I will get us both off to bed. I am not available to fold laundry for others tonight. Tee Hee.

Thanks for all of the support.
Maggie and Cindy

Wednesday, November 15, 2006 7:05 PM CST

This morning, the attending physican and fellow came in and asked if we would like to go home. Of course!! Her cultures are negative, and white count is slowly moving upwards. She got a red blood cell transfusion on Tuesday, so she was definetly more perky. And no fever in over 24 hours. They got us in at Radiation therapy early (12:45) so we got checked out from CHW, and then went over to Froedert and then home.

Tuttie, Phil and Chris all came to visit yesterday. My wonderful friend and old roomate from college, Kate, came in the evening. Today Phil, Betsy, and Chris were all here. I have done some laundry and we just finished dinner.

Maggie will be unable to go to school this week. She is very bummed about this. Tomorrow we have to go get counts checked in the lab, and possibly a platelet transfusion. Then radiation therapy at 5:15.

Radiation therapy was fun today, we got to see alot of the therapists who have treated Maggie over the last few months. Barb, one of the therapists, is getting an adorable ginger tabby next week, and she showed us a picture of her.

Maggie is sitting out here in the den with me, we hate to admit it, but we are watching the finale of Dancing with the Stars.

I think I'll go clean up the kitchen and fold a load. Thanks for checking in.

Maggie and Cindy

Monday, November 13, 2006 12:56 AM CST

Hello from Children's Hospital. Maggie had a fever yesterday(Sunday) evening, so I called in and they said to come to the ER and pack a bag and plan to stay. To say the least, Maggie was very bummed about not being able to go to school. She is at the nadir, or the lowest point where her counts will probably be after the last chemo.

We got to the ER at 7, and up to the HOT unit at 11. Maggie got her port accessed, blood work done, antibiotics, and then some platelets. There is talk of her getting a transfusion of red cells today. She had a fever again this morning, so we'll be here at least another day or two.

I ran out to the grocery store this morning to get some frozen treats for Mags, as she also has mouth sores from the chemo. And I managed to get some yarn to knit her a scarf for the new coat she got in Chicago.

Prior to the trip out here, we had a good weekend. Being bums, a trip to the new Trader Joes at Bayshore, some unpacking for Cindy. We went to see Tuttie Sunday and watched the Packers WIN there, and Phil, Paul, and Betsy were all over in the evening prior to the trip to Wauwatosa. Paul brought Maggie a beautiful small potted pine tree decked out in ribbons and lights from the shack. It is in the back yard, on our little patio.

Radiation every day this week at 5:15pm. At least I don't have to drive out here again today.

Maggie and Cindy

Saturday, November 11, 2006 11:42 AM CST

Well, I must say that yesterday, despite the horrid weather here in Wisconsin (sleet, freezing rain, high winds, slush and sleet) was the best day Maggie has had in a long time.

We were up fairly early, did some stuff around the house, and then Tuttie came for a visit and lunch. She headed off to a bridge game (big surprize there) and Mags and I went to Target.

Then home for a bit and then out to Froedert for radiation. Due to the aforementioned weather, it took a little over an hour to get there. The freeway was a mess. Coming home was easier. We stopped at Culver's and got some dinner. Maggie was less tired, less pain, and more alert and than she has been in awhile. She had a package from a teacher in the front door when we got home with some things from the DC trip. How nice to remember her when they were far away.

Thursday she had labs done and her red count is okay, platelets okay, but sort of a non-existant white count. Not unexpected after the chemo and with the radiation. Maggie REALLY wants to go to school on Monday, so if no signs of a fever or infection this weekend, I will let her go.

As usual, I can't go without telling everyone how much all of the support means. It helps Maggie keep fighting, and me to keep on with my support staff services. (That's my role in all of this). Off to do laundry and go to the pharmacy.

Maggie and Cindy

Thursday, November 9, 2006 11:14 AM CST

There is no place like home. You forget how great it is to be able to get up at 2AM and wander around the house, or do some theraputic vacumming.

Mags is wiped out from the chemo and the new pain meds. Plus the radiation. We have radiation at 5:15 pm this week and next and then we move up to 4pm. Today Maggie has to go over to CHW prior to radiation to get some labwork done. We don't have a clinic appointment until Tuesday, unless she needs blood products or there are problems.

Right now, Maggie came downstairs, and said she has an appointment with some cheesecake. Yesterday we went to the Cheesecake Factory at Bayshore Town Center and had the best server in the world. Betsy. So this is Maggie's third try at finishing this one piece of cheesecake. Her appetite is poor.

Tuttie stopped over yesterday and this morning. Betsy was here tuesday and wednesday, Uncle Phil comes every day. He met us at Froedert yesterday for the radiation therapy.

We have had delicous and nutritious dinners delivered the last few nights. Thanks so much. And my leaf raking angels (thanks, Cochrans and Knippers) don't like to take credit.

Maggie did get to her sewing class for a bit on Tuesday evening, but no school this week. Hopefully next week. They had testing three days this week that thankfully Maggie was exempted from.

Maggie and Cindy

Monday, November 6, 2006 8:33 PM CST

I feel as if I have clicked my heels three times. Oh, but it's great to be home. Maggie had the last of the chemo this morning, got her darbopoetin and neulasta shots, and was deaccessed from her port. Then we loaded up the car and went over to Frodert for the radiation treatment that they squeezed in for her and then home again, home again.

I had a wonderful surprise as I pulled up to the house, that some GREAT people had raked the leaves. What a nice thing. We came in, had some lunch, and then had some great visitors. Tuttie, Chris, Uncle Phil and Betsy were all here. Tonight one of Maggie's classmates and her mom brought over a sketchbook with some pages decorated by her art class. They found me organizing kitchen cupboards. Because Chris and Phil got my new microwave put in this afternoon. Woo hoo.

I got a call from the middle school today that chicken pox has been diagnosed in a student, so Maggie will need to stay home for awhile.

The new pain meds have my warrior much more comfortable. Plus the radiation and the chemo are decreasing the swelling in her stump.

Tomorrow's schedule only has a trip to Froedert for radiation in the early evening. Thursday Maggie has to go to CHW for labs plus the daily radiation. No more chemo for 2 weeks. They expect her counts to really bottom out from this chemo.

I am going to go put a few more things away in the kitchen. Then off to sleep in our own beds. Thanks so much for all of the support.

Maggie and Cindy

Sunday, November 5, 2006 10:35 AM CST

Well, between the new medicines, chemo, radiation, all of the great people here at CHW, and our huge network of support, Maggie is feeling somewhat better. She successfully got her radiation on thursday and friday, with her stump in a different position, so that the pain would be manageable. She has just finished the 4th of the 5 days of chemo. She says that the pain is okay. We watched two DVD's of Friends last night and got some great laughs in.

So, it has been a very productive time here at CHW. The most important thing was to get her pain in control. And it seems as if they have been successful at that. She has had this cocktail of chemo meds before, right after her lower leg was amputated, and it makes her feel terrible, but managable with meds. If I remember correctly, she did need a fair amount of blood products for support in between the cycles. She did get a darbopoetin injection on Weds, that will hopefully help with red cell production. And after the chemo is over she will get Neulasta, to help boost white cell production.

Uncle Phil has been here every day after school. He is up at the shack for the weekend, but will be here this afternoon. Tuttie came for a nice long visit yesterday and she and Maggie did some work with watercolor pencils. Chris and Deanne were here friday night, while I popped out for dinner. Betsy has been working her little hennie off with the opening of the Cheesecake Factory restaurant in Bayshore Towne Center. Maggie had a nice visit yesterday from some of her best friends.

It is cold and sunny today. Good November weather. I should be raking leaves or unpacking boxes. I think I'll just keep Maggie company instead.

Thanks for all of the messages.
I love all of the support and the lurkers (tee hee)
Maggie and Cindhy

Friday, November 3, 2006 11:05 AM CST

Even though it was hard psychially to be back on the HOT unit, I have been totally convinced it was the right thing to do, as Maggie's pain is better (not gone by any means) and lots of people are working hard to get it under control.

Tuesday and Weds her pain was too intense for the needed radiation treatment to the stump. Her stump is very swollen from the new tumors and very painful to straighten. So last night they reconfigured the treatment plan for the time being and did the treatment with her leg bent. All of this reinforces my feeling that the entire team is a team, working on Maggie's behalf to get these tumors OUTTA HERE!!!!

All of the people who check her book, and pray and give us good karma and wishes are part of the team, too. Can you tell that the sun is out today????

Paul, Uncle Phil, and Chris all came to visit yesterday. Plus lots of phone calls. I ran home to rewash the laundry I left in the washer on Sunday, and get a few things I forgot.

Thanks for all of the good wishes. They are very important to all of us.

Time to hop in the shower.
Maggie and Cindy

Thursday, November 2, 2006 9:56 AM CST

I just typed a whole entry, and then lost it. I'll try again. I don't think it will be the same.

Maggie was admitted to the HOT unit yesterday evening for pain control issues (Increasing pain, unable to get her radiation treatments due to the pain, unable to get the pain under control), and to start chemo today. She will be getting cyclophosphomide and topotecan chemo agents.

Monday we came out to clinic for the fever (which they think is from the disease) and the pain issues. They hydrated Maggie and drew cultrues and changed up her pain medication. She had the first radiation appointment.

Tuesday, we had a great visit from Betsy for the day. She went with us out to Froedert for the treatment. Maggie was in alot of pain during the treatment.

So yesterday, we came to clinic earlier and she got hydration and pain meds prior to radiation, but was unable to get her stump radiated due to the pain in it. Uncle Phil came with us over to Froedert for the treatment. Chris came in the evening while I ran home to pack a bag.

Another team is working with Maggie on the pain control issues. We are lucky to have so many resources available to us.

Right now Maggie is doing a ceramics project with Ann, the art therapist. And discussing Project Runway.

Thanks for all the good messages. Maybe the lurkers could sign in and give me a boost.

Maggie and Cindy

Sunday, October 29, 2006 10:18 AM CST

As nice as it is to go away for a bit, it is always great to come home.

Maggie and I had a great time in Chicago. Most definetly, the high point of the trip was the performance of Wicked that we went to on Wednesday. It was spectacular. Our seats were in the 6th row from the stage. The staff at the Oriental Theater was very accomadating of the wheelchair, and directed us right to the seat and the accessible restroom when we needed it. We did a little retail therapy before the show. Maggie got a great new hat.

Then we went to the hotel out in Deerfield, and had dinner. Maggie is having alot more pain where the new tumors are. It is a good thing that we stocked up on extra pain medication before we went.

Thursday we went to the Art Institute of Chicago in the morning, and shopping in the afternoon. It was raining all day on Thursday.

Friday we skipped the educational stuff and went straight to the malls. I also took a trip down memory lane and drove by my grandparents old house, and my grandmother's old condo.

Yesterday we went back into the city into the Lincoln Park neighborhood, and to a design shop that Suzy had told us about where you pick out fabrics and details, and they fabricate a purse for you. Very fun. Then a very windy drive home with a stop at Gurnee Mills.

Maggie had a fever last night, and after a phone consultation with the charge nurse from the HOT unit, I decided not to take Maggie to the ER, but to keep an eye on her and see how things are today. It was great to get an extra hour of sleep last night with the daylight savings time change.

Monday afternoon Maggie starts radiation therapy to the new tumors. We meet with Suzy on Weds afternoon to discuss chemo options.

Keep my girl in your thoughts and prayers. She is feeling kinda punky today. I hope it is just a virus.

Maggie and Cindy

Tuesday, October 24, 2006 6:36 PM CDT

The sun came out today, for the first time in over a week. It is amazing how much it helps my spirits.

We were off bright and early for an appointment with Dr. Firat, the radiation oncologist, at Froedert. Maggie and I decided that he needs to be bottled and sold, because he is so reassuring and calming. They did the radiation simulation and plotted the treatment that will begin next Monday. They will be radiating her right leg in the stump site, as that is where the new tumors are. There is also an area of suspicion abover her knee in her left leg. Dr. Firat is going to examine the PET and MRI scans of that leg to determine if it needs radiation.

From there Maggie and I went out for breakfast, and then did some window shopping until our afternoon appointment at Children's. Just a check up and some more discussion about treatment. Dr. Warwick is still looking into treatments, and exploring clinical trials for Maggie. Maggie also met Kristen Bingen, who will be working with both of us as a psychologist, now that Suzanne has left.

Tonight Maggie is at her sewing class. We will leave in the morning for 3 nights in Chicago. We have great tickets to see Wicked at 2pm tomorrow. To get handicapped accesible seating, you have to call a special office that organizes that ahead of time. We are lucky enough to get very good seating. We are both looking forward to that alot. We also plan to do lots of shopping and go to the Art Institute. Maybe the Field Museum or the Shedd Aquarium too. We have to play it by ear. All of this depends on how Maggie is feeling.

Thanks to everyone for all of the positive messages, calls, dinners and everything else. It's hard for my aged brain to remember everything.

I am going to go get a load out of the dryer, and fish some suitcases out of the piles in the extra bedrooms.

Maggie and Cindy

Thursday, October 19, 2006 7:59 PM CDT

When I sit down to type journal, sometimes it is hard for me to remember where in the saga I left off.

Monday was such an emotional day and night that Maggie didn't feel well enough to go to school on Tuesday. We spent the day making appointments, and then at 2 Maggie, Chris and I headed out to CHW for the MRI of Maggie's head and spine. We got home about 5, had a quick supper, and then Maggie went to her sewing class from 6:30 to 8:30. Betsy was here most of the evening.

Wednesday morning we were up at 6, so that Maggie could have an MRI of her legs at 7AM. From there she went to school for the day (Good thing it was a late start day). She came home from school exhausted, and took a couple of hour nap on the couch. Uncle Phil came over in the evening, after Tuttie had been here.

Today was school and some errands, a visit from Tuttie, and then a great dinner I cooked on the new grill. Uncle Phil has parent-teacher conferences.

Tomorrow night Maggie is going to a social at school, and I think we will spend the weekend sleeping in and enjoying fall. Watching the Packers win.

Suzy called tonight with the MRI results. The tumor in her head is still present, but has not grown. So the radiation kept it from getting larger. Nothing shows up in the areas we were concerned about in her spine, and the MRI of her legs shows the new tumors.

Tuesday morning Maggie will meet with Dr. Firat at Froedert to get going on the new course of radiation. We have an appointment at CHW in the afternoon.

Wednesday afternoon, Teacher's Convention starts. Maggie had been scheduled to go to Washington DC with her class, but I feel it is more prudent for her to be closer to CHW. She does not have the stamina to make the trip, which is disappointing for her. She and I have made alternate plans to go to Chicago to get some shopping and sightseeing in. We have tickets to go see Wicked, plan to go to the Art Institute, and hit the Miracle Mile. Sometimes you just gotta do some retail therapy.

Thanks so much for all of the positive messages. It helps both of us to know how many people are pulling for Maggie.
Monday was the four year anniversary since she was initally diagnosed. It seems like years more on one hand, and mere minutes on the other.

Maggie and Cindy

Monday, October 16, 2006 7:26 PM CDT

When I called Suzy this morning to check on the progress of results from the PET scan, she told us to come at our scheduled time. So I picked Maggie up from school at 11:45 and we headed out to CHW for labs and conference. The tumor in her shoulder is gone, the one in her left leg is almost gone, and the results about the brain are inconclusive. Plus there are 4 new tumors in the leg that had the amputation, right above the stump site. Plus there is an unidentifiable spot in her lumbar spine, where Maggie has been having alot of lingering pain. Not the news that we were hoping for. Dr. Warwick and Suzy spent a long time explaining the options for treatment.

So tomorrow afternoon, Maggie will be having an MRI of her head and spine. To try and figure out the unidentifiable and inconclusive things.

Then later this week, we will have a meeting with Dr. Firat at Froedert about more radiation therapy, as Maggie's other tumors seem to have responded well to radiation. She may start more radiation as soon as next week.

Dr. Warwick and Suzy feel that the type of chemo that Maggie has been getting does not seem to be the one for her, as she has new tumors while getting this chemo. So they are looking at other options, but Maggie wants to take a break from chemo for a week or so, so we will talk about this next week. This will also give them time to review the MRI results, confer with Dr. Firat, and talk to other physicans in the Children's Oncology Group.

We had lots of visitors this afternoon. Betsy, Tuttie and Phil were all here. Maggie is scared, sad and disapointed. I second those feelings, plus add some anger.
We will keep fighting.

Keep my brave warrior in your thoughts and prayers.
Maggie and Cindy

Friday, October 13, 2006 8:31 PM CDT

The PET scan went smoothly today. Suzy, Maggie's Nurse Practioner called yesterday to let us know that they probably won't have the results of the scan until Tuesday. I am to call her on Monday before our scheduled appointment to see if the results are in. If not, we will go out to meet with her and Dr. Warwick on Tuesday. Chris, Betsy and I all went along for the scan, and Betsy went into the scanner with Maggie. Afterward, we went for lunch at Mayfair.

Then Maggie and I came home, got her morning pills in (at about 2pm), and then headed off to the bookstore so that she could get the newest Lemony Snicket book that was released today to read over the weekend. She is about half way through with it already.

This week, when Maggie has had a hard time getting to sleep at night, she has taken advantage of a new service offered to her. We pick up the phone and call Tuttie for a story. Tuttie is the best storyteller I have ever known. What a wonderful gift for both Maggie and Tuttie. By that time of day my imagination is in the "off" position. Tuttie stopped over a number of afternoons this week. Phil was here almost every day, and last evening we christened my new grill with some inagural hamburgers.

I still can't find some things since the move. Who needs makeup anyways. It has gotten cold here, and Maggie and I had a fire in the fireplace this evening.

Maggie is trying to watch a cooking show on TV, read her book, and eat some chocolate at the same time. Talk about multi-tasking.

Thanks to helpful friends for dinner, snacks, a ride for Maggie (when I had a dead battery earlier this week) and lots of good wishes and support.

Maggie and Cindy

Monday, October 9, 2006 11:01 AM CDT

Thanks, as usual for all of the positive messages. Maggie and I both look forward to them.

Maggie had a movie filled weekend. Friday after her chemo she wasn't feeling good enough to go to the Homecoming game as she had looked forward to. She was sad and disapointed about this, but some sister time with Betsy and watching a chick flick helped.

Saturday I continued to unpack some boxes. I forsee being done with this in about 2010. Maybe later. Maggie went to the movies in the evening with her dad to see " The Guardian". Sunday was a visit with Suzanne, Maggie's psychologist and friend who is moving to Chicago :( She came to pick up some boxes for her move. Then in the afternoon Maggie went to the movies with Betsy and Peter and saw "Open Season" (I think that was the title.)

It was a glorious Indian Summer weekend. This morning the weatherman was talking about snow in a few days!! Tuttie came over for supper last night, and Phil and Paul were here to work on assembling the beautiful stainless steel grill they got me for my birthday.

At first, waking up in the house felt different. Now it feels comforting and cozy.

Today we go out to CHW after school for lab work only. Then on Friday, Maggie has her PET scan in the morning. On Monday we have a clinic appointment to talk about the results.

Thanks for checking in.
Maggie and Cindy

Thursday, October 5, 2006 12:30 AM CDT

Yesterday, the community service club from WFBMS and the BayAttitude service group donated the money from the car wash and treat selling to Camp One Step. Sheila, Maggie's Social Worker from CHW, who is on the board for camp, was present to accept the donation. She was floored by the amount of the donation and the enthusiasm of the kids. Tuttie and I were both there to watch. They saw part of the informational video about camp. You can follow the link at the bottom of Maggie's page to see the video yourself.

If you look around the first floor of the house (but not in the cupboards or closets) you may think we are fairly moved in. Not so. But I am making progress every day. Friday night some girlfriends came over to arrange furniture, drink beer, and eat pizza. Phil and I do a couple of boxes every day.

Friday night, on our way to bed, Maggie informed me that the "bump" on her head is back. We talked to Margaret (the NP who is covering for Suzy while she is out on a family leave) and she told us that it is probably what we fear it is. It is in the exact spot where Maggie got her radiation. Maggie has her next PET scan scheduled for the 13th of October, but Margaret said she could have a CT any time before that if we want to, but that it wouldn't change the current course of treatment. Our feeling right now is to wait. Maggie had her port accessed on Monday in clinic, labs drawn, she got a liter of fluid because she was dehydrated, and she got her chemo. The rest of the week she has gotten her chemo at home. I will deaccess her port on Friday after her chemo, and give her Neulasta shot on Saturday.

Maggie is definetally (sp?) more worn out this week. She only made forty five minutes of school on Monday, but has gotten there the rest of the week. She also has managed to fit in her sewing class, lots of visits with family, and she wants to go to the high school homecoming football game on Friday.

Keep those prayers, thoughts and good wishes rolling.
Maggie and Cindy

Thursday, September 28, 2006 11:03 AM CDT

I just came home from the closing on the old house. Sort of sad, but I am very glad it is done. The last few days have been a flurry of packing. I am very lucky that I have some great friends who come on a moment's notice and roll up their sleeves and help. I would be lost without them. The movers came at 8 on Tuesday and left at 8 that evening. There are boxes everywhere. But last night I got the bed made, and that was a great thing to collapse into.

Monday Maggie had her appointment at CHW for labs, port accessing and exam, then a quick Xray of her back (because of the pain there) and chemo. Clinic moved on monday to the second floor at CHW, and we were there for 6 hours. It is a beautiful new clinic. We go back on Monday, and on October 13th, Maggie will have her next PET scan. Chemo will be at home, after school for the rest of the week, and Tuesday through Friday next week.

Tonight we are having dinner at Eastcastle Place with Tuttie and Phil. I hope to fix her DSL line while we are there.

Uncle Phil deserves a special shout-out for going above and beyond. Last night, just after he had left from helping me unpack some kitchen stuff, I found a very dead and old bat in the radiator cover in my bedroom. I called him, and he came right back and took care of it. It had gotten in the house a couple of years ago, and then it disappeared. It was stuck on a sticky mouse trap. We all thought it had just flown out. What a great brother and uncle he is. Give him a hug if you see him.

I will stop now, having given you the most recent installment in the adventures of Maggie and Cindy.

Maggie and Cindy

Saturday, September 23, 2006 6:57 PM CDT

Such a busy week. It started with the wonderful car wash on Sunday that benefited Camp One Step. Monday and Tuesday Maggie went to school in the morning and did radiation therapy in the afternoon. Tuesday was the last session. While it is wonderful to have "graduated" from radiation, the therapists, doctors, nurses, other staff, and patients that we met there have left a big impression on both Maggie and myself. Maggie brought Krispy Kreme (her fave treat) donuts and coffee to the staff. And she had picked out beautiful silver necklaces for Danielle and Eliza. They had made Maggie a gorgeous purple and pink multistranded bracelet. We all got misty eyed, and everyone said how much they will miss the stories from Tuttie.

The rest of the week was spent helping Tuttie pack for the big move that happened yesterday. She is very lucky to have a friend/designer who helped with furniture placement, and supervision. Her apartment looks spectacular. I was with her all day yesterday, and Maggie came after school. I got most of the technology hooked up, but I don't have her DSL line working yet. I had to get back here today to work on my own house. If I sit and think for too long, I tend to freak out. How unusual.

Monday we have an appointment at CHW at noon to start the next 2 week course of chemo. They will leave her port accessed until Friday, and she will get the other four days of chemo at home. Tuesday is our big day, I think the moving van will be here at 8:30 EEK!!!!

Julie Schleck and family, we are so sad about Monkey. He can chase mousies in cat heaven with Tigger.

Maggie and Cindy

Monday, September 18, 2006 10:50 AM CDT

I should be packing boxes right now, but I had to express my pride and gratitude to the great kids who took part in the car wash yesterday to benefit Camp One Step. I even remembered to take my camera, so I can sucessfully post a picture. They raised $1021 for camp!!!!! Maggie came home with a smile, went to bed with a smile and woke up with a smile. The very best medicine of all.

2 more days of radiation, a clinic visit on Tuesday after the last radiation appointment. Then we might get a few days off from driving out to Wauwatosa!!!!

Tuttie is moving on Friday, and next Tuesday we do it. Tomorrow morning a friend is bringing her dad's pickup truck over to help schlep all of the stuff in my garage down the street. If anyone wants to pitch in, I think we'll be starting around 9am. I have to pick up Maggie at 12, so it will be short and sweet.

The weather for the carwash was perfect. Sunny and 80. Today is much cooler. (how I like it)

Now I will try and post a picture of the kids on the top. I am still working on getting a tiara picture on the picture page.

Maggie and Cindy

Sunday, September 17, 2006 10:56 AM CDT

GO TO THE CAR WASH TODAY!!!!!!
6260 N. LAKE DRIVE!!!!!!!!!!!!

Thursday, September 14, 2006 7:23 PM CDT

Woo Hoo! Maggie only has three more radiation treatments left. She had the last treatment to her leg on Tuesday, and today was the last treatment to her head. She brought home the mask made for her that was clipped to the table during the treatment. The last two treatments have seemed shorter, and today the sun came out for the first time in the last few days.

Continue to make some progress in getting ready for the move. Tuttie moves a week from tomorrow. We move on the 26th into her house. I am looking forward to all of this being completed.

Tuesday Maggie had clinic with Suzy. We talked about Maggie's continuing low back pain, problems sleeping, and other issues. As radiation therapy continues to work for two weeks after treatment ends, they are planning on doing her next set of studies in about 5 weeks. Her hemoglobin was high enough that she got to skip the darbopoetin shot. That was good news.

Maggie is very tired from all of this medical hoopla plus going to school for a half day every day. She plans on trying to go to school for the full day after radiation ends.

As happened last time, Maggie is getting some burns from the radiation treatment. We are applying some salves and she is taking some extra pain medication. She says the worst part is that it itches. She is also having some continuing GI issues.

Betsy came over on Tuesday after she had a root canal. Paul had a tooth pulled today. I had my tooth issues last month, and hope to skip this month.

Thanks for all of the good wishes for my milestone birthday. This morning I felt all of my 50 years when I got up.

Sunday, the Community Service Club from WFBMS is having a car wash to benefit Camp One Step, the camp Maggie attends in the summer. I am very proud of these kids, and honored that they are choosing her camp to benefit. It is at 6260 North Lake Drive from 2 to 4pm. Suzy asked Maggie if she would be there, and Maggie told her she would wash her car for her.

Come on you lurkers, make an old lady happy and sign the guestbook.

Maggie and Cindy

Monday, September 11, 2006 9:11 AM CDT

Every week on Friday, Maggie and I have been saying, "Another week of radiation over." The radiation therapists at Froedert are so kind and sweet and fun, I will miss them when Maggie is done, but the drive out there every day and now that she is really getting burns, I will be so pleased when we are done.

Another cycle of chemo under her belt too. Pat, Maggie's home health nurse came on Saturday to give the last chemo of this cycle, and then last night I gave her Neulasta shot.

Maggie has had a lot more homework so far this year. Her revamped schedule has been working well for her. She is exhausted by the end of the day. I work to keep her awake, or limit her nap in the afternoon, so that she can get to sleep earlier at night.

We got lots of packing done this weekend. Betsy was over on Saturday. Sunday evening we went out to dinner with Tuttie, Phil, Paul, and Betsy to celebrate Paul and my birthdays. I chose not to wear my tiara to Pandl's. Sunday we also moved some furniture from Tuttie's to a friends house, and then my dining room set went to another person's house. Tuttie is leaving me her dining room set. Lots of logistics.

Radiation every day this week at 1:15. Clinic appointment on Tuesday.

I must go pack a box or two.
Maggie and Cindy

Wednesday, September 6, 2006 8:21 PM CDT

What a huge day Tuesday was. Maggie and I were up bright and early for her to get off for her first day of 8th grade. I went and met a friend for coffee and then off to Wal-Mart for some necessities.

Then back to get Maggie for the daily trip to Wauwatosa. I make it sound like a huge distance away, but round trip it is only 25 miles. First radiation at Froedert and then labs, clinic, port acessing and chemo over at CHW. All of the nurses and doctors came in to sing Happy Birthday to me.

When we got home at 6, a group of my friends, Betsy, Tuttie and Phil were all here for a surprise party for me. I don't like being the center of attention, but I must admit that I loved every minute of it. Margaritas, mexican food, and birthday cake. Thanks everyone for taking time out of a very busy day and making mine so special. I feel very honored. It's true that you don't turn 50 every day. I feel this year like I've earned every single one of those years. I wore a beautiful tiara with those noticeable numbers right in the middle. I may take to wearing it at all times.

Today was school, radiation, and chemo. We did fit in the wonderful drive home along the lakefront of Milwaukee. Cool chicks that we are. Tuttie came over tonight looking for some leftover birthday cake. She closed on her apartment today. Lots of changes!!!

Thanks for all of the love and support.
Maggie and Cindy

Monday, September 4, 2006 3:56 PM CDT

Happy Labor Day (or in my book, Happy Day Before School Starts)

Mags did great finishing the week with the chemo and radiation. It is wonderful to have three days off for the long weekend. Her head is starting to burn from the radiation. She is only missing hair on one side, so far. So if she has her bandanna off, and you get a right side profile, it isn't noticeable. But on the left there is a totally bald patch about 4 inches in diameter.

Saturday, Maggie and I went to the wedding ceremony for Lisa and Junior. Lisa is a nurse I work with. It was so great to see some of my co-workers there. I miss them alot. The wedding was beautiful, and Lisa was breathtaking. Maggie and I both loved her wedding dress.

Saturday evening, we got some work done at Tuttie's, unpacking some of the boxes I had taken there before I put my house on the market, and then packing them with Tuttie's crystal.

Things are progressing on the moving front. I had a moving company here on Thursday to give me a bid, and Friday the appraiser for the buyers was here. Yesterday, Betsy was here for most of the day, and she worked on her room, Maggie worked on her room, and I did laundry and got the hall closet packed. Every where you look there is something that will remind all of us of Tigger.

Tonight Phil, Paul, Betsy, Peter, Maggie and I are going out for a sandwich. Phil needs to get ready for his first day with students, and Maggie needs to gear up for her first day of eighth grade. She also gets to have radiation, a clinic visit and chemo and her sewing class starts again in the evening. Whew. I am merely transportation and support services for these activities.

Thanks for checking in on my brave warrior.
Cindy and Maggie

Thursday, August 31, 2006 8:48 PM CDT

A beautiful day here. Cool, sunny and breezy. For the last few days, on the way home from Maggie's radiation treatments at Froedert, we have driven home along the lakefront, with the windows down, sunroof open. Pretending we are cool.

Chemo started again on Monday with a trip to CHW for labs, a clinic visit, and the chemo infusion. While Maggie was getting her chemo we watched a copy of "My Fair Lady" that a friend had brought Maggie from China. Before I got the machine straightened out there were Chinese subtitles. Pretty neat.

Then over to Froedert for the radiation treatment. The rest of the week, Maggie has had the treatments at her ususal time (1:15) and then the chemo here at home. I give her the oral Temozolomide at 3 and then the home care nurse comes and gives her Zofran and the Irinotecan at 4. I unhook her from the chemo and flush her line. The needle stays in her port for the whole week. After tomorrow's treatment she will be de-accessed, and they will access her port on Tuesday in clinic for the second week of the chemo. During the second week she only gets the Irinotecan. Plus lots of other oral meds, but not the oral chemo drug.

We continue to gets lots of nice messages from people regarding the death of Tigger, our 20 year old cat. Thanks alot.

School starts on Tuesday. Maggie will only be going for a half day for the first month while she finishes her radiation treatments.

We got semi-serious about filling some boxes this week. Betsy was here last night and will come tomorrow night to help. Uncle Phil has been busy helping Tuttie out. He comes over every day to see Maggie, plus he had to work three days this week.

Tomorrow Tuttie is coming to the radiation treatment. She will get to tell the stories over the microphone. She is going to continue the stories about her summers in Wabash at her Grandparents farm.

Have a great last few days of August.

Maggie and Cindy

Saturday, August 26, 2006 8:23 PM CDT

Thanks to everyone for all their messages of kindness regarding Tigger. Maggie and I talk about him all of the time. I think it is going to take a long time to adjust to a cat-free home. We do plan on getting another cat in the future, but need to wait awhile until things calm down in our lives.

On Thursday, Uncle Phil came with Maggie and I to her radiation therapy appointment. Friday her appointment was canceled, due to continued problems with the table she is on for the treatment. We did get a call later in the day that it fixed, so we are ready to go for Monday.

Friday morning we did get a few things done at Tuttie's house. One would think with the impending moves I would have my butt in fast forward, but it seems to have stalled me.

Friday afternoon we went to see Tuttie's new apartment at Eastcastle Place on the east side of Milwaukee. It is beautiful. I don't know how else to describe it.

Today Maggie went to a Bat Mitzvah ceremony for a friend of hers, followed by a brunch. Tonight she is at the party, and I am getting my fill of home improvement shows on television. I should be packing a few boxes, but think I'll pass. It is too late in the evening to start now.

Monday brings 8 AM appointment at CHOW for labs prior to chemo. The rest of the week she will get her chemo here at home. But out to Froedert every day for radiation.

We had a meeting with the principal and Maggie's guidance counselor on Friday morning to rearrage her schedule to accomodate her chemo and radiation. Suzanne, the psychologist that Maggie and I see at CHOW also came to help me remember the issues I wanted to address. I am pleased with the plan that they came up with.

Thanks again for all of the kind messages. Especially nice to get some of the lurkers to sign in.

Maggie and Cindy

Wednesday, August 23, 2006 10:47 PM CDT

Another tough day. Maggie spent last night downstairs on the couch having a slumber party with Tigger, because he was too weak to get up the stairs. This morning we all decided it was time to let him go chase mousies in cat heaven, and tonight he was put to sleep. Maggie and Betsy and Chris were all here, and we all wispered to him how valued a part of our family he has been.

Maggie started losing her hair yesterday. So by tonight she had a bald spot where she is getting the radiation. Who knows if it will fall out all over or not.

The table in the radiation room was acting up, so we had to wait for over an hour and a half for her treatment. Just one of those days.

But we did have a very anticipated and much loved visit from Uncle Phil this evening. He will be coming to Maggie's treatment tomorrow. It seems like forever since he went to Canada in June. We are all thrilled to have him and Paul home.

Cindy and Maggie

Tuesday, August 22, 2006 8:44 PM CDT

A very long day today. We were up fairly early, and then went downtown to my hairdressers for a little maintence for me. For Maggie it was a chance to read some trashy magazines and visit with Emmy. From there we went for lunch at Bruegger's in Wauwatosa and then off to Froedert for Maggie's radiation therapy. The therapists are so kind and gentle to Maggie.

Then over to Children's Hospital for labs and an appointment. Maggie was due to get a darbopoetin shot today, but had great news that her hemoglobin level was high enough that she didn't need a shot. Anne, the art therapist brought back the ceramic pieces that Maggie had glazed a couple of weeks ago, they had been fired, and looked wonderful. Suzanne, the psychologist, also came in to see us.

Our big news for the week seems to be that we have accepted an offer on the house. Tuttie has a moving date to her apartment of September 22nd, and we will be moving in there the next week. We went over there tonight and worked on a closet.

Phil and Paul are on their way home from Canada. We talked to them tonight, and they were in Minnesota. Yeah!! On Friday they will be coming to radiation with us, and then to see Tuttie's new apartment.

Busy couple of days ahead. Radiation continues every day, and Thursday Maggie has to register for school. Friday we have a meeting at school with the principal and her counselor. Thursday afternoon the house is being inspected for the sale.

We are asking for lots of good thoughts for Tigger. He is not doing well. Maggie has spent the last hour petting him and scratching behind his ears.

Betsy and Peter came over to see us last night. We had a great visit.

Chemo will start again on Monday for two weeks. Radiation will be every day Monday through Friday until the end of September.

Thanks for checking in.
Maggie and Cindy and Tigger

Friday, August 18, 2006 7:54 PM CDT

After awhile, you sort of get to know the other families of patients who are getting radiation treatments at the same time your loved one is. As we were going in to Froedert today, going across the skybridge from the parking garage, a young woman who is receiving radiation and her friend who transports her to and from the treatments, made sure to get our attention and tell us to have a good weekend. The kindness and thoughtfullness of strangers has always amazed me and given me a view of the world outside of ours.

Pat, Maggie's butterfly, has been busy. She dropped off a beautiful figurine for her the other day, and I noticed a poem from her in the guestbook. Amazing.

Tuttie came with us and told Maggie stories about her childhood when she spent summers on her grandparents farm in Wabash, Indiana. The techs love the stories too.

I keep meaning to mention that Maggie has finished the first in a series of books that a secret admirer dropped off at our house.

I did manage to get a visit in to the dentist this week for a root canal of an abcessed tooth. I guess I am back to my tooth grinding.

No big plans for the weekend. It seems to be a full time job to keep the house picked up for showings. Maggie is worn out from radiation by the end of the week.

Right now Tigger and Maggie are on the couch watching TLC. We got our movie in earlier. We are all looking forward to Uncle Phil and Paul coming home from Canada next week.

Thanks for checking in on us.
Maggie and Cindy and Tigger

Monday, August 14, 2006 6:44 PM CDT

Today's radiation therapy at Froedert went very smoothly. After a short wait, Maggie got on the table, told them what order she wanted the spots treated in, and listened and giggled while I told her some stories during the treatment. One of the radiation techs put different masks on every time he went in the room to reposition her for a different spot. There was a sponge-bob mask and a Chicago Bears mask.

Then we went to Mayfair so Maggie could finish spending some money she had burning a hole in her pocket. First we went to Crate and Barrel, where she got some birthday presents for Paul and Mom. Paul's birthday was last month, and we usually celebrate his with mine in September.

Speaking of Phil and Paul, they are due to be back from Canada the middle to end of next week. Maggie and Uncle Phil have been burning up the phone lines between GoldRock and Milwaukee.

Tigger has had Jungle Kitty time the last few days. He loves the cooler weather, especially when I leave the main doors open and he can peer out the screen. Last night I was taking some yard waste to the curb and looked towards the house to see his little cat head poking up over the bottom of the front screen door. Guarding the house, I think.

Tomorrow is a trip to the dentist for me, then radiation at Froedert at 1:15 and clinic at CHOW. The house is being shown in the afternoon, so I need to get to my friend the vacuum and get busy.

Keep those positive thoughts and prayers coming,
Maggie and Cindy............Tigger too

Saturday, August 12, 2006 5:55 PM CDT

Maggie has finished the first cycle of her chemo!! It went well with the home health nurse coming in the morning and hooking her up, giving her the zofran and the irinotecan. After the irinotecan finished, I would unhook her, flush the line, cap it off, and we got ready to go to Froedert for radiation therapy.

On Thursday they added her shoulder to the spots being irradiated, so now all three tumors are getting zapped. Friday Tuttie went with us, and she told Maggie stories about the pet raccoon we had as children. Never a dull moment. Then over to CHOW for the darbopetin and neulasta shots, and she got her port deaccesed.

We got to combine the two trips to CHOW that were scheduled for Thrusday and Friday afternoons into one on Friday, so Thursday we went and I got a pedicure and Mags had a manicure and pedicure. What girly fun.

The house was shown today, so Maggie and I went for a visit to Tuttie's and had Kopp's for lunch. This afternoon we both took naps, and another dear friend dropped over to visit.

We have beautiful cool summer weather yesterday and today. The windows are open and Maggie and I are going to have some leftovers from a dinner brought over by people earlier this week, and watch a movie. Tonight I think it will be "How to Lose a Guy in 10 Days". It is nice to have the weekend off. Two weeks off of chemo, but radiation every day, Monday through Friday.

Thanks for checking in on us.
Maggie and Cindy

Tuesday, August 8, 2006 8:29 PM CDT

Every time Maggie and I are in the yard and we see a Monarch, Maggie says "There goes Pat". We have lots of butterflies this summer.

Maggie had her chemo at home with a visiting nurse on Saturday for the first time. It went well. We had Sunday off, and on Monday she had radiation at 1:15 and then we went over to CHOW for chemo. They accesed her port and got the chemo. Lots of people in to visit. I ran into Diane, her PT when I went down to get us a snack, and brought her back to see Maggie.

This morning she had her chemo at home and then we went out to Froedert for radiation. We had to wait a bit, so she took a nap in her wheelchair in the waiting room. Yesterday they started radiation treatment on her head in addition to the tumor in her leg. I just asked her if the tumor felt any smaller, as you can feel it on the outside of her skull. She said that it does!! She also said that it hurts less!! She will have chemo at home the rest of the week in the morning, then out to Froedert for radiation. On Thurs and Friday we have to go to clinic after radiation for darbopoetin and neulasta shots. The nurse practioners in clinic have been working hard to get these injections approved by insurance so that I could give them at home. No luck yet. But as long as we have to be next door for radiation, not so bad. Just a long day. These injections will stimulate her bone marrow to produce red cells and white cells.

We went to Target after radiation today to do the back to school supply shopping. Last year we waited too long, and had a hard time getting all of the neccesties, like matching folders and notebooks. Oh, to be in 8th grade.

I just finished paying bills online and now we have to head upstairs for a shower for Miss Maggie. She thinks just because she is doing chemo, she should sleep in:)

I love all of the messages in the guestbook. Today I told Maggie stories while she was in radiation about the crazy cat I had when I was a young adult(?), and stories about some old and dear friends dogs and cats. Marsha, what was the name of your cat?????

Keep those thoughts and prayers coming
Maggie and Cindy

Tigger went out twice today for the first time in a number of weeks! He likes our cooler weather.

Friday, August 4, 2006 6:26 PM CDT

Welcome to (almost) the end of Maggie's first week of treatment.

I think I last posted on Wednesday morning. That afternoon she had her second round of chemo. Thursday and Friday she had 12:15 radiation therapy and then 1:30 chemo. The radiation is at Froedert Hospital and the chemo is at Children's.

Maggie got nervous during the radiation treatments, so this afternoon I talked to her during the treatment over a microphone into the treatment room. She loves to hear stories about when she was a baby and little girl. She calmed down and was able to finish the treatment. At present she is only having the tumor in her leg irradiated, they will add the other spots later.

Then over to Children's for the chemo. They have left her port accessed for the week, and she comes home with it capped. She gets a 24 hour dose of zofran, a great anti-emetic before the chemo is infused.

The chemo is 5 days a week for two weeks and then two weeks offf. To get the fifth day in this week she will get chemo at home tomorrow from home health care nurses. The home care company is due to drop off supplies within the next hour.

Monday we have to go out to clinic after radiation therapy for a visit so she will get her chemo there on Monday and then at home for the rest of the week.

We renewed our Netflix subscription this week, just in time to have DVDs to watch during the chemo. On Weds we and Thurs we watched some teen romances, and today we watched, for all of you have been waiting for us to finally break down and do, "Pride and Predjudice". Very Good. Maggie read this in English this spring, and was so pleased to be able to help me with the storyline.

When we were leaving for our trip to Wauwatosa this morning, there was a package in the back door for Maggie. Some anonymous admirers left a good book for her. What fun!!

Thursday in clinic Ann, the art therapist, brought Maggie some great art projects to do. She also brought Maggie a monarch butterfly chrysalis. It was in a clear box and came with information and directions. She named it "Pat" because you can't tell the gender until it hatches. Well, Pat hatched overnight, and this morning Maggie came down and let her go. How wonderful.

Tomorrow Maggie will have the chemo here, and on Sunday we plan to do a little work at Tuttie's house while there is an open house here.

Tonight Betsy will be coming over to visit. Some good sister time is in order.

Thanks to everyone for all of their support and messages. I love to read all of the messages.

Tigger seems to be on a stable course these days. He does not like the hot weather, and has not had Jungle Kitty time in a couple of weeks.

Maggie and Cindy

Wednesday, August 2, 2006 9:33 AM CDT

Thanks for all of the positive messages. It helps so much.

Yesterday was radiation simulation and the first chemo. In radiation simulation they plot the angles they will use for radiating the tumors and make molds of devices to hold Mags in the same position for each treatment. For the mask that they use for the radiation of the head, they heat this plastic mesh sheet up and them stretch it up from Maggies neck to the top of her head while she is lying on the table and fasten it to the table while they plot the coordinates. She had the mask on for about 20 minutes and never complained once. During treatment, the mask will not be on as long. I would have been freaking out and screaming if I had to have it done.

She will be starting radiation therapy on Thursday and it will be every day, five days a week until September 25th.

Then it was over to Children's for chemo, with a stop at the deli for lunch. Maggie had a lot of questions for Suzy about how she is feeling (new pain, no appetite, very sleepy) and Suzy patiently answered all of the questions. Then we consented to the chemo and it began. We got home about 6pm after getting to Froedert at 11:15. Then I went to Fitzgeralds and filled prescriptions.

We got a call from Tuttie telling us that Channel 4 was doing a piece on the 10 O'clock news on One Step At A Time camp. It was great. People might be able to catch it at noon today or the 5 o'clock news.

The chemo drugs Maggie is getting this time have alot of the same side effects that the previous ones did. Plus some extra bonuses. We highlighted Maggie's hair this weekend. I usually wouldn't let a 13 year old color her hair, but when it is going to fall out again, you better appreciate it while you have it. Maggie wanted blue or purple highlights, but we could only find white or fuschia. We did fuschia last time, so white it is. She didn't want to spend too much time looking for a kit, as she knows it will start to fall out soon.

Keep our brave warrior in your thoughts.
Maggie and Cindy

Monday, July 31, 2006 7:46 PM CDT

Hot and humid Wisconsin is even more hot and humid today.

We were up at 5:15 this morning for Mags to get her pills in. Then she went back to sleep for a bit while I got ready for our trip to CHW. We were at Day Surgery a little before 7AM for Maggie's port placement. She also had the bone marrow biopsies while she was under general anesthesia. Everything went well, but Mags was very sleepy afterwards. Thats okay. We left the hospital at 2:45. Chris was there for the whole day, and Tuttie came out for a couple of hours. Maggie woke up while Tuttie was visiting and she got the biggest smile.

A slight change of schedule for tomorrow. Instead of clinic first, we will go for radiation therapy simulation at 11:30, and then over to clinic for the first chemo. Suzy was kind enough to get the schedule changed so that we won't be so rushed.

There is a showing of the house scheduled while we are out in Wauwatosa tomorrow. Good timing.

This evening Maggie is very sore. She is watching "Friends", which has always been great therapy for us. The reruns on TBS are from the first season.

Thanks for checking in on my brave warrior.

Maggie and Cindy

Saturday, July 29, 2006 3:32 PM CDT

Hi maggie here!

If you want to read about all the medical hooplah going on tomorrow and the rest of the week, look at the entry before this on the history page, cause i dont want to say it all again!

I just wanted to say that Tigger also needs your thoughts and prayers, he has had a little infection that is clearing up but his renal faliure is stable but still not great.
Tigger is still adorable though!

Sign in you lurkers!

maggie cindy and tigs

Wednesday, July 26, 2006 7:55 PM CDT

Hello from hot and humid Wisconsin.

Thanks to everyone for all of the support and good wishes.

We went to clinic yesterday morning before Maggie was scheduled to go for the bone marrow biopsies. As she was starting to show symptoms of a sinus infection and conjunctivitis, Suzy decided to postpone the biopsies until Maggie has these infections under control. So she will have her medi-port replaced on Monday, and will have the bone marrow biopsies while she is under the general anesthesia for that.

Dr. Warwick and Suzy met with Maggie, Chris and myself and talked to us about the chemotherapy they are proposing to treat the new tumors. The current plan is that she will have Irinotecan and Temozolomide. She will recieve both of the drugs for 5 days, have 2 off, then have only the Irinotecan for 5 days, and then 2 weeks off. She will get the medication in clinic and go home at night. One of the meds comes in a pill form, and the other will be given IV. It will only take an hour for the IV to be administered.

As this is her third (or fourth if you count the chemo before the stem cell transplant)course of chemo, there is a increased risk of bone marrow suppression and the need for blood products between rounds of chemo. She will probably get Neulasta to boost white blood cell production and Epogen to boost red blood cell production after each round of chemo.

In the afternoon we all met with Dr. Firat at Froedert for a consultation regarding radiation therapy. He plans to irradiate all three tumors. Maggie will have radiation simulation next Tuesday where they make the forms to immobilize her during the radiation. Dr. Firat reviewed her scans with us, and showed us where the tumors are. This was our first chance to see the scans, and while it was scary to see them, it gives me a chance to visualize the beast and give me something to direct my thoughts towards.

Maggie's pain is in much better control since her medication was changed before she went to camp.

We took Tigger to the vet on Monday, as he seemed to have something wrong with his mouth. The vet confirmed that he is in worsening renal failure, but is okay for a 20 year old cat. He is now on the same antibiotics as Maggie. He has perked up since the meds were started. (Maggie wants me to clarify that they are not sharing meds. She is getting big pink horse pills and he gets a small amount of liquid via a dropper.)

Sunday we celebrated Betsy's 23rd birthday a day early. We had a beautiful outside brunch. Maggie and I took a cake to her at work on Monday.

I need the lurkers to sign in. It makes me smile.
Thanks for the support.
Maggie and Cindy

Saturday, July 22, 2006 2:42 PM CDT

Right now, Maggie is near the end of a long nap on the couch, with Tigger curled up right behind her knees. She missed him terribly while she was at camp, and he just couldn't figure out where she was. When I left at 7:30 this morning to drive down to Lake Geneva to get her, I told him that she would be with me when I came back. He answered with a "mew".

Maggie had a wonderful time at camp. She formed stronger bonds with people she had known before, and made new friends. They did a slew of activities, including archery, softball, dances, field trips, swimming, boat day and more. I have a sneaking suspicion that there were more then a few pranks pulled. Her wheelchair came home covered in a flour paste mixture. And I guess they had tried to clean it there a number of times. I think I will haul out the pressure washer this afternoon and have a go at it.

Maggie did tell me she missed a few things because she was too tired or had too much pain. I am so amazed that she made it through all two weeks of camp. She came in the house, took a look around the first floor, and curled up on the couch in the living room for a nap.

The house is being shown this afternoon, so in a few minutes I will haul her down to Tuttie's, so we can go through a few more cabinets there. Tomorrow the realtor is having an open house. We will be out for brunch during that time. We are going out to celebrate Betsy's 23rd birthday, which is on Monday.

I kept busy getting the house on the market while Mags was gone. It went on the market over a week ago. The night before it went on the market some great friends brought over dust rags and Martinis and helped.

Tuesday morning Maggie will be having bone marrow biopsies and in the afternoon we meet with the radiation oncology physican. I will try and keep the page updated. We are both scared and nervous about all of this.

Thanks so much to all of the people who continue to support our family on this journey.

Sign the guestbook, you lurkers.
Cindy and Maggie and Tigger and Betsy and Tuttie

Saturday, July 15, 2006 4:17 PM CDT

Hello People! It's Maggie here from camp in Lake Geneva. I was able to snag some time online but I couldnt get to my email so this is my only way of communicating. First to mom, Hi!! Im fine! Love U! Give Tigs some QKT! To everybody else, Hi! Camp is going so awesome! It is wicked hot here, it really makes me appreciate AC. Today new campers came (it was the end of first week) and we got to know them. I am super busy so I gotta get off and eat my pretzel. Love You All!!

Maggie

Thursday, July 13, 2006 3:52 PM CDT

First of all, thanks to everyone for their messages of support and concern.

I decided to wait to update the page until I heard from Maggie at camp. Finally I got a letter today, Thursday. She says that she is having fun at camp. And that Suzy, her nurse practioner, checked her surgical site and said that she can swim. Woo Hoo!! It is very hot here, in the 90's today, so I bet a dip in Lake Geneva feels good.

There were the ususal requests about sending a care package, which I have already done, and for me to show Tigger some lovin' for her. He is baffled by all of the goings on and checks her room constantly at night for her.

I have been busy cleaning. The house goes on the market tomorrow, and was listed by the agent on the Internet today. The sign is up too. I have 2 showings tomorrow and one on Saturday, so I better get off of the computer and dust and vac.

Thanks for the prayers and posititve energy
Cindy

Friday, July 7, 2006 6:54 PM CDT

As part of the Indium scan on Thursday, Maggie had a bone scan. We got a call on Thursday afternoon from Suzy, her nurse practioner that the bone scan shows three new tumors. One in the leptomenigeal area of her brain, where the headaches have been, one in her left leg, again where she has been having so much pain, and one in her left scapula. She has been having intermittant pain in that shoulder, but had attributed it to the way she was grabbing on to the flagpole in front of school to round a corner.

This morning Maggie had the rest of the Indium scan, which has ruled out infection for the cause of these problems. She also had a PET scan, and CT's of her head and chest.

We rallied the troops (our family) yesterday afternoon. Uncle Phil wanted to fly home from his fishing camp in Canada, but we want to wait on that a bit. We had a meeting with Dr. Warwick (the oncologist), Suzy, Suzanne (the psychologist), Tuttie, Chris, Betsy and myself this afternoon. Maggie's biggest concern is that she wants to go to camp tomorrow as planned. We all are in agreement that this is the absolute best thing for her. Suzy will be on staff the first week of camp.

When Maggie returns from camp, she will have bone marrow biopsies. We will meet with the radiation oncologist that day also, to talk about radiation therapy. Dr. Warwick will be busy for the next two weeks confering with her collegues in the Pediatric Oncology world about the best course of chemo for Maggie. She will have to have her port-a-cath replaced at some point in time.

We have shed a lot of tears in the last two days regarding this devlopment. Maggie is determined to fight again. I vow to do all I can to help her.

Right now we are going to finish packing for two fun filled weeks at camp. Suzy adjusted Maggie's pain medication yesterday to try and get better control of it. It seems to be working.

I ask again for your thoughts and prayers.
Cindy and Maggie and Tigger

Wednesday, July 5, 2006 4:35 PM CDT

Hey People!! Maggie here with a update from the hot yet fabulous (as always) Wisconsin (The True Dairy State- so there California!)

Anyhoo, we went to go see dr. King today after we had an MRI the other day. He took out my stiches (ow!) and then had us look at the MRI results. For all you non-medically informed people (be thankfull you dont have to be)with an MRI result, you get a bunch of pictures like an X-Ray. Well, so in my left leg's tibia, there is a inflamed or prominent or something like that. As Dr. King put it, "You have one angry tibia." Not good. So they are going to squeeze in some more tests before camp (3 days!!!!!!!!) that just sound complicated and painfull to me. So there we go, and I'm sure Mom (a.k.a Cindy) will post later explaining this in more correct terms.

Talk To Ya Later,
Maggie

Sunday, July 2, 2006 9:08 PM CDT

Hello from hot and humid Wisconsin.

Maggie continues to recover from the surgery she had in June. She has been bothered with lots of pain in her unaffected leg. We saw Dr. King, the orthopaedic oncologist last friday and he did X-rays on that leg. It continues to show stress fractures that are inflamed. Due to her history, he wants to get an MRI of that leg. We were lucky enough to get an MRI time for tomorrow at 1PM.

Then we have an appointment with him on Wednesday, and an appointment in oncology clinic on Thursday. I work on Monday night, and Friday will be spent getting ready for Maggie to go to camp.

On Saturday the 8th Maggie will go to camp at Camp One Step At A Time at George Williams University in Lake Geneva, Wisconsin for 2 weeks.

I am hoping to have the house go on the market on the monday after Maggie goes to camp. We are hoping to move into Tutties in the middle of September.

Maggie also has a visit to Utah planned in August with her dad and DeAnn to visit her family there. She is all wound up tonight about both excursions. Silliness and such. And a pottery class and a sewing class in between her trips.

Tuttie is feeling much better since her little trip to the hospital in May. Now she is starting to feel panicked about the move. I tell my daughters that the next time I move after this time will be into a retirement facility, and that they will have to take care of it. That should be enough to get them on their toes.

Stay cool,
Maggie and Cindy

Tigger update is that we seem to have found a food he loves, and he is getting chubby again. YEAH!!

Saturday, June 24, 2006 6:16 PM CDT

Hello there.

Maggie's surgery to remove the bone growth from her amputation site went well. We were in the hospital until Monday, and got to come home that afternoon. She has done well, but continues to have a significant amount of pain. We went to see Dr. King for a checkup yesterday, and he is pleased with her progress. He wants her to start physical therapy next week.

I have been off of work since before Maggie's surgery, and I return to work on Monday night. Since we have been home I have been making some headway in getting the house ready to go on the market. Maggie's main job for this is provide moral support and verbal encouragement. When I am carrying boxes of stuff into Tuttie's house she says "Go, Go GO!!". Right now she is taking a nap in the chair in the den with Tigger. I did yard work earlier today and he got some jungle kitty time.

Tonight we will watch a DVD and call Uncle Phil in Canada. I need to wake Maggie up now so she can sleep tonight. She was up until 2AM last night, unable to sleep. I hate to wake up sleeping children, but I need her to sleep at night.

Summer in Milwaukee has been cool so far. I love it.

Maggie and Cindy

Thursday, June 15, 2006 3:58 PM CDT

Well, we were able to proceed with the revision of Maggie's leg, above the amputation site, so it was done today. She is resting comfortably in her room, with Chris and Betsy by her side. Tuttie was here also, and she got the biggest smile of all when Maggie came out of the recovery room.

Lots of Maggie's friends from other hospitalizations have stopped by to see us. She is on the orthopaedic floor instead of the HOT unit, but it still is all very familiar.

The cytology and DNA studies done on the spinal fluid that was collected during the spinal tap last week have come back negative for any sign of Ewing's. Good news. They are still unsure what this spot on her brain is. Diane, her physical therapist thinks it is a sign of the rocks Maggie has in her head.

We had the interior of the house painted earlier this week, in anticipation of it going on the market next month. Tigger was quite freaked out by having extra people in the house and new smells, and the furniture out of place. Maggie hugged him goodbye this morning and told him all will be back to normal soon. I think he understood in his little cat way.

We may only need to be in the hospital for 3 days, Dr King said today. That was good news. I am off all of next week from work to take care of Maggie. Tomorrow night I am getting together with my bunch of girlfriends from college/high school. We are going to Lucille's Piano Bar. For the dueling pianos. I just need to see my girls.

Got to get back to Maggie
Cindy

Friday, June 9, 2006 3:39 PM CDT

I think every day, I need to update the page, but don't get to it. Here goes.

Today was Maggie's last day of seventh grade. I think we are both ready for the summer break.

Last weekend, her friend Michelle (aka Peacock #1) came to visit for Saturday. They had a great day, but Maggie was a little subdued. She told me in the afternoon that she had a headache. We talked more about it, and she said that she was a little light headed, and felt that things "just weren't right." We had a clinic appointment already for Tuesday, so she went to school on Monday and Tuesday she went for the morning.

At clinic on Tuesday, Maggie shared with Suzy, her nurse practioner, her symptoms. They decided to be extra cautious and Wednesday morning Maggie had an MRI done of her head. We also talked about other reasons for the headache, like dehydration, sinus infection, stress.

Wednesday afternoon Suzy called with the results of the MRI. Maggie has a sinus infection, plus there is an area of abnormal enhancement. We don't know what this area is. Is it from all of the chemo? Is it an infection? A virus? Or a reoccurance of the cancer. (Least in likelihood). So Maggie is on antibiotics, and yesterday she had a lumbar puncture so that they could send her CSF (cerebrospinal fluid) off to be studied. They will be doing bacterial, viral and cytology studies. All of these will take awhile.

We aren't sure if they will be going ahead with the surgery next week, because of the sinus infection.

Tuttie was in the hospital last week with low blood pressures, renal failure (which reversed!!! yeah!!) and some other issues. Uncle Phil and Paul left for Canada this morning for the summer.

Right now Maggie is at an end of school party. I need to go pick her up.

Keep us in your thoughts and prayers.

Cindy Maggie and Tigger

Friday, June 9, 2006 12:48 AM CDT

Okay- long time since I got around to updating the page- {this is Maggie in case you were wondering} lots has gone on and school is finally out!!!! Yipeeee!! Anyhoo, I had been having really bad headaches on the left side of my head, so we had an MRI done to see what was up. So we got the results back, and it turns out that I have a sinus infection. (Big Surprise} Well, thats not all that they saw from the MRI. Turns out there is a prominent spot near the back of my head. (eww) So yesterday (Thursday) I had a spinal tap done (ow!) A spinal tap is where they take some fluid that circulates through the brain and test it for infection, bactieria, etc. So after they did the Spinal Tap, a doctor looked at it and didnt see any cancer cells, so the chance of it being a tumor is at the bottom of the list. (good) The most likely cause is from the sinus infection, and hopefully it can be taken care of with antibiotics. We havent gotten official results from the spinal tap yet, so we will give you the 411 as soon as we here it.

talk to y'all later,
maggie

Friday, June 9, 2006 12:48 AM CDT

Okay- long time since I got around to updating the page- {this is Maggie in case you were wondering} lots has gone on and school is finally out!!!! Yipeeee!! Anyhoo, I had been having really bad headaches on the left side of my head, so we had an MRI done to see what was up. So we got the results back, and it turns out that I have a sinus infection. (Big Surprise} Well, thats not all that they saw from the MRI. Turns out there is a prominent spot near the back of my head. (eww) So yesterday (Thursday) I had a spinal tap done (ow!) A spinal tap is where they take some fluid that circulates through the brain and test it for infection, bactieria, etc. So after they did the Spinal Tap, a doctor looked at it and didnt see any cancer cells, so the chance of it being a tumor is at the bottom of the list. (good) The most likely cause is from the sinus infection, and hopefully it can be taken care of with antibiotics. We havent gotten official results from the spinal tap yet, so we will give you the 411 as soon as we here it.

talk to y'all later,
maggie

Tuesday, May 23, 2006 3:23 PM CDT

Hello People!

Maggie here with a brand new- never before seen update!!( It's about time);) So, here in the wonderful town of Whitefish Bay, nothing incredibley exciting has happened. I managed to choose Pride and Predjuduce as a novel for school, and am seriously having doubts. Who knew that Jane Austen could go on for pages about well, nothing?!? Anywhoo, I am scheduled for surgery on the leg (to remove excess bone) for sometime in early June (Maybe the fourteenth???) And then I get to go to Camp One Step At A Time for two weeks in mid July. OSAAT is a truly awesome camp for kids who have had or have cancer and this will be my fourth (gasp) year! Check out the camp website for more info- www.onestepcamp.org And then, in August, my dad and I will be flying out to Utah, picking up my grandparents and various other relatives, and driving up to Yellowstone for a few days. After that we will drive all the way down to Lake Powell in southren Utah for a week or so. So much fun! So much hooplah! So much crazieness!

talk to y'all later
magggie

p.s Tigger is helping me write (a.k.a sitting on my wrists) and is being very adorable at the moment :)

Tuesday, May 9, 2006 7:14 PM CDT

Maggie had her scans on last friday, May 5th. She was originally scheduled to have them today, but they called from the hospital at the end of last week to say there was a shortage of the radioisotope that they use for her bone scan, and could we come in earlier, while they still had some? Sure. They did lots of extra xrays after the bone scan, as the scan showed some stress changes in the bones in her unaffected leg. I got the call from her nurse practioner, Suzy, on Friday night that there is no visible sign of cancer.

Saturday I picked Maggie up from a slumber party and took her to a Bar Mitzvah. In the evening she went to the party part of the Bar Mitzvah.

Saturday night Maggie woke up with severe pain in her left (unaffected) leg. The pain has continued through today. Luckily, I had some pain pills stashed away from when she had her port removed in January. The pain is worse when she bears any weight on the leg. She has been unable to go to school for the last two days. We had a clinic appointment scheduled for this afternoon or I would have taken her to the emergency room. They did more Xrays of her leg today that don't show any sign of a tumor or fracture. So we will wait and see if this improves. If not, they will do more investigative work.

She is very upset about having missed two days of school.

I guess I haven't posted about a few upcoming items. Maggie will be having surgery on June 15 to address the issues on her affected leg where the tibia has continued to grow and is causing her pain. She wanted to wait until school was out to have the surgery, but it is very important to her to be ready to go to camp the Saturday after the fourth of July.

Towards the end of the summer, Tuttie will be moving to Eastcastle, an apartment complex adjoining the Protestant Home on the east side of Milwaukee. It is new construction. It is very close to Phil's condo, and the hospital where I work. Maggie and I will be selling our house and moving in to Tuttie's house. This is the house that I grew up in. Mom has lived there since I was 4. It is on the same street where Maggie and I now live, and in the same suburb and school district. We never have a dull moment around here.

Happy Mother's Day to all my fellow moms.

Tigger just walked by and said "meow".

Cindy and Maggie

Tuesday, May 2, 2006 4:03 PM CDT

Hey Maggie here. Just thought I'd right an update since it has been forever from when we updated the page. Tigger at the moment is yowling, looking for attention. Anyways, we scheduled surgery to fix that bone for the week after school gets out. That way I wont miss any school but will be fine for camp! I heart camp in a really big way!!! (camp-ism) Now Tigs is sitting on the computer table with me. Friday night I am going to a sleepover, but have to leave early the next morning to go to a Bar Mitzvah. Busy Busy.
Happy May,
Maggie (and Tigger too!)

Monday, April 10, 2006 3:39 PM CDT

It is a beautiful spring day here, temps in the 60's. So we will probably have snow later this week.

I successfully made it through Betsy's teenage years, so I am confident that I can pull on those memories when I want to pull my hair out. Maggie is so proud of herself for being a teenager. Considering where she was last year, having just had the amputation, and looking forward to the chemo and then the stem cell transplant, I am astounded. Last year we had a quiet family dinner at home. This year we went to Zaffiros for delicous pizza and salad last Monday, the 3rd. On Friday we went to Buca di Bepo for a more teenage girl party. Lots of fun, but very loud. Perhaps that is my advanced age showing. Betsy and a friend of mine (who is a mom of one of the girls) went along. We came home for cake and gifts.

We saw the orthopaedic oncologist a few weeks ago. He said we can delay on the stump revision surgery until Maggie feels ready. She and I are talking about the beginning of summer vacation. She doesn't want to miss school.

Tigger just walked across the computer table while I was typing. I guess it is a shortcut between the chair he was on and the couch. He needed to look outside and check on the bird action. He had outdoor kitty time earlier this afternoon.

Friday we go to clinic at Children's for the monthly checkup thing. Maggie is out of school for spring break starting on friday and all of next week. No big plans, just some dental visits for Maggie, another trip to CHW to see the psychologist, and maybe a trip to the shack. I work Sat and Sun this weekend, so she will spend Easter with Chris and DeAnn.

Happy Spring
Cindy and Maggie

Wednesday, March 29, 2006 5:24 PM CST

Finally, an update from Maggie herself! NOTE TO ALL: I WILL BE A TEENAGER FRIDAY!!!!!!!!!!!! yes! Friday night we plan to go to Zaffiro's for pizza with Betsy, Nonnie, Paul, and Uncle Phil. Yum! We went to Dr. King (orthopedic oncologist) today and he said that the bone has grown more (not good) but it is nothing to worry about. School is going well, but I am so ready for spring break. The ski trip was awesome, and skiing on that wonderful Utah powder was a dream (so much bettter than Colorado!!!) Anyways, spring is approaching fast here in Whitefish Bay but who knows? We all might wake up to a foot of snow tomorrow. I mean, we live in Wisconsin, right? Land of unpredictible weather.

All for now,
Maggie

Tigger Update- Tigs will be 20 on April 16th!!!!!! :)

Monday, March 6, 2006 8:20 PM CST

I have been such a slacker!! I was trying to get Maggie to update her page before she went on her ski trip, and then I tried to get her to do it after she came home...... but I just had to do it tonight.

Things are going well. Maggie went to Park City, Utah for a week, and came home on Saturday, March 4th. I was thrilled to see her so happy and healthy when I went to pick her up at O'Hare. She had a great week with everyone from camp. She was able to go sit-skiing 3 days. They had one day planned as an off day, and they were rained out one day. She was totally pumped up when she came home. Lots of other activities, like a Mardi Gras party, sleigh ride, swimming, movie night, tubing and a ride on the Ice Rocket. The Ice Rocket is on the Olympic Bobsled run. Maybe Maggie will be the luge champion in the family.

When we took her to Chicago the week before, I took Tuttie to Ikea. She has wanted to see the big box store that Maggie and I love to shop at.

During the week that Maggie was gone I got to do some great stuff with my girlfriends and family. I went out for dinner a few nights, drank my share of wine, and went to a baby shower for a good friend. Plus a fish fry on Friday with Betsy and Tuttie. And two nights of work!!

Maggie went out for brunch with Betsy yesterday, and then over to her apartment to play with her kitties.

Today she was up bright and early for school, but I got a call at 11 to come and pick her up. She couldn't stay awake. She came home to take a nap and did some math with Uncle Phil this evening. I think the fun from the week has caught up with her. This seems to be the case since the transplant this summer. She gets fatigued easily, but fights it, and then crashes.

I will try and post a new picture sometime this week. That is Tigger at the top, not Mags and Uncle Phil.

Tigger is VERY happy to have Maggie home. He doesn't leave her side. He yowled alot while she was gone. Asking where she was. I do not speak cat very well, or his 20 year old brain can't retain what I tell him.

Maggie and Cindy

Sunday, February 12, 2006 4:39 PM CST

During the last Winter Olympics, Maggie was being silly and drew a picture of "Mom on the luge". Now I see that there is a 52 year old woman competing (the only competetor for her country on the luge) in this Olympics. Do you think I will be able to train for the next one? I'll probably have to move to some obscure country and fund it myself, but who knows?? I'll send out some press releases if I do decide to pursue this goal.

Back to everyday life. Mags did fine with her port removal. She still doesn't have the stamina she used to. She missed three days of school. She did get to school last Friday and then to the forensics tourney last weekend.

A full week of school this week was capped off with a full day forensics tournament on Saturday from 6:30 AM to 5 PM. She qualififed for the power round, and medaled in that. Woo Hoo.

Maggie started the most recent installment in her sewing class this Tuesday. They are making closet organizers.

I had a run-in with a very nasty stomach virus this week. It knocked me flat for a couple of days. I did rebound enough to drag Maggie to the home impovement show on Friday evening.

This week Maggie has her monthly visit to Children's on Tuesday morning. A chest X-ray and CT scan, blood work, and her clinic visit. They are planning on doing the bone scans less frequently now to reduce the radiation exposure.
I have to work Monday night so Chris will take her out there and I will meet them.

Right now I have Maggie up in her room, picking things up and folding laundry. It's important for me to keep my children working.

I can't find Mr. Cat at the moment. He must be upstairs supervising.

Maggie and Cindy

Wednesday, February 1, 2006 4:56 PM CST

Hi everyone, Maggie with the update today. Yesterday the port came out and it went well, but I feel pretty horrible today. Hopefully school tomorrow, I have an art (my fav subject) project that needs to get finished before Friday!!
We have this hillarious page-by-day calender that is from the book "Bad Cat" and everyday it is a new "bad cat" who has commited some cat-ish crime. It is a hoot to see what it is each day, and they always make us laugh! My fav so far is a pic of a cat in a big silver bowl, and the caption is " I've already greased the bowl." funny funny. Speaking of bad cats, Tigger is not doing his job and keeps jumping off my lap to go do whatever it is that is a higher priority to him than paying his dues as lap warmer. Also, Happy Birthday to Uncle Phil (Jan. 23rd) and Nonnie (Feb. 3rd)! Just so you know, 23 days until I leave for Park City, UTAH!!!!

Happy February 1st,
Maggie, Cindy, and Tigs too.

Monday, January 30, 2006 11:49 AM CST

When I haven't posted for awhile, it seems like life is getting back to more normal ways. My first few nights back at work were hard emotionally, but the last 2 weeks have gone really well. It is so great to be back with my co-workers and to get a paycheck. Maggie stays at Chris and DeAnn's house and he gets her to school in the morning. I ususally don't get home from work until around 8 AM.

Last weekend, Maggie went to her first Forensics competition, at Oconomowoc Middle School. Uncle Phil taught at that school for a year a few years back. Three bus loads full of kids competed. She is competing in the impromptu reading category. She has another meet this coming weekend.

Tomorrow we have to be at Children's Hospital of Wisconsin at 7:15 in the morning for her day surgery to have the port-a-cath removed. Another step forward. She is nervous about this. The older she gets, the more nervous she is about procedures. She has scans on the 14th of Feburary, but those are like second nature to her.

I am going to go give bunny-bunny a bath (in the washer) to get him all spiffed up for the trip to CHW tomorrow. He always goes into the operating room with Maggie to keep an eye on things for us.

Tigger says "meow". I washed his pet bed last week and he is upset that I can't get the cover back on just right, so he is sleeping elsewhere.

Maggie and Cindy

Thursday, January 19, 2006 2:26 PM CST

Winter has returned to Wisconsin. We had a couple of really cold days. The sun has been out, though, which helps my body relearn this business of going from working all night then being a "regular" person on my days off.

Maggie had a three and a half day weekend from school. On Friday there was an activity day in the morning for the middle school. Her grade had just finished a fantasy unit in literature so they went to the Fox-Bay to see "The Chronicles of Narnia". They had the afternoon off.

Maggie left on Friday afternoon for a weekend trip to the Wisconsin Dells with Chris, DeAnn, and her stepsisters and their families. They went to a water park at the Wilderness Lodge. She had a great time and came home Sunday tired and happy. We bummed around on Monday.

Tuesday we had our monthy visit to Children's. Maggie's blood work continues to show improvements from the transplant. She is not quite ready to come off of the medications she has had to be on since the transplant, but maybe next month. She is scheduled to have her port-a-cath removed on January 31st through day surgery. We also got her paperwork completed for the One Step at a Time Camp Utah Ski Trip. She will be going to Utah for a week of skiing on Febuary 25th. Tehy work with the National Abilities Center for ski instruction. She went on this trip last year, but it was right before we knew the tumor had come back, and the subsequent amputation and treatment. So skiing will be different and more challenging this year.

Maggie also met with Suzanne, the psychologist she has seen throughout the relapse treatment. Maggie wanted to talk with her about her hesitancy in using her prosthesis. She wants to become as independant as possible, but is still adjusting to all of the changes from the last year. Bottom line is, we (all three of us) think it is going to need a little more time. Enough said. As I have said before, we are so lucky to have such great people to work with at CHW.

I need to go pick her up from school.
Cindy and Maggie

Mr. Cat (aka Tigger) does not like it when Maggie is gone overnight. He goes up to her room and looks for her and then comes and cries to me, as if asking where she is.

Tuesday, January 10, 2006 12:54 AM CST

Okay, so I have been a slacker. I aplogize for not updating sooner. I think I will blame it on going back to work. I had conviently forgotten how hard it is to work nights and flip back to days on your days off. I've only been working straight nights for 15 years.

We met with Dr. King (the orthopaedic oncologist) and Heather (his PA) on Tuesday. They feel that her leg needs to be revised, but that it can wait if we want to. I made sure that we discussed what the recovery period would be like. So I think we will wait awhile. Especially because Maggie is no where near finished growing, and it might have to be done again. Maggie is going to have some counseling sessions with Suzanne, the psychologist, to talk about why she is having problems with the prosthetic.

I worked Friday and Saturday night, so Maggie spent the weekend with Chris and DeAnn. She and DeAnn are working on sewing a quilt. At home, Maggie is working on sewing a purse.

The sun is out today, after 17 overcast days. I can't tell you how good it is to see it.

Tonight is another session at Children's on living with long-term effects of childhood cancer treatment.

Going back to work is a good step towards normallacy. My co-workers are the best. I missed all of them so much. They have been a great source of support for Maggie and I.

I must go sit in the sun like the cat does.

Maggie and Cindy

Saturday, December 31, 2005 5:43 PM CST

I got up early this morning and drove to Lake Geneva to collect Maggie from camp. She is very exhausted, tired and very happy. Camp is a wonderful place. I don't have words to describe what a positive experience it is for Maggie to interact with all of these people. She is at the beginning of a cold, which is usual for the end of camp. I wondered if she would have one after 4 nights, but I think it is being with all of those people, in such tight quarters, with little sleep.

I spent the last few days down at Columbia Hospital getting ready to go back to work. I work Tuesday, Friday and Saturday nights next week. I am looking forward to going to work, taking care of the patients, and seeing my friends. Also getting a paycheck. That will be great.

Suzy, Maggie's nurse practioner, called yesterday evening. They are thinking of combining the medi-port removal with the surgery that will need to be done on the end of her amputation site. I will schedule an appointment with Dr. King (the orthopaedic oncologist) next week to discuss this.

I want to say something profound about the journey that we all have had during the last year, but words escape me. (That is most unusual.) So I think I will just thank everyone for their love, support and prayers. It all means so much to all of us. Thank you from the bottom of our hearts.

Tigger and Maggie are having some quality kitty time right now. They missed each other.

Happy New Year
Maggie and Cindy

Sunday, December 25, 2005 8:45 PM CST

Merry Christmas to Everyone!!

We actually did our big family celebration on the 22nd, before Phil and Paul left for a Florida vacation. Everyone came here for dinner, and I had one of those wonderful moments at dinner, looking at everyone, with the candles lit, and thinking how wonderful it is to be together. Every year I vow to cut back on the presents, but this year I did well until last week. Maggie's big "WOW" present was a sewing machine of her own from Tuttie. She was speechless, and we all had overflowing eyes. Maggie is such a creative girl, and it is great she has so many ways to express herself.

Right now we have the machine set up in the dining room on the table. I am sure we will be braving the post Christmas crowds tomorrow so that Maggie can get some more fabric. We are also busy getting ready for winter camp, at the George Williams YMCA camp in Lake Geneva, where she goes during the summer. She will be there from the 27th until the 31st.

For Christmas eve we went to Tutties, lit a fire, and had a very mellow and nice time. Betsy and Peter came over here later so they could all watch "Elf". This morning Betsy and Peter were here again for our stocking opening. Maggie had left a nice assortment of cookies for Santa.

The girls went to Chris and DeAnn's for brunch at 11 this morning, and then Maggie called to ask if she could go with them out to one of her stepsister's houses for more hoopla. She will be beat but happy by the time she gets home. It's almost 9 now.

Maggie and Cindy

Friday, December 16, 2005 3:59 PM CST

After a week or so where I haven't had the best time with technology (car repairs, phone going out, oven breaking, etc) it seems like I am on a good streak today.

Things have been refreshingly stable and busy here. Maggie is busy being a 7th grader. Tonight she is going to see the holiday decorations at the Milwaukee Zoo with a friend and her family. Betsy and I are going to do more Christmas shopping. She has school until next Thursday. She hopes to go to Winter Camp with One Step At A Time in Lake Geneva from December 27th until the 31st.

We have a clinic appointment next week. It seems like ages since we have been there. This is the longest interval between clinic visits that we have had since she relapsed last spring.

I am planning on returning to work in the beginning of January. I talked to my boss this week, and there are a number of things I have to do to get updated before I return to my two 12 hours nights per week. Maggie will stay at Chris and DeAnn's house on the nights I work. This is what we had worked out before she relapsed, and it worked well.

Maggie and Uncle Phil were baking spritz cookies here the other night. Lots of fun.

Stay warm
Maggie and Cindy

Sunday, December 4, 2005 10:10 PM CST

Busy week. Thanks for the positive messages regarding Maggie's recent scans. I haven't talked to Suzy yet, so I still haven't had my questions answered. That's okay, I just add more questions to the list every day.

Winter is here to stay in Wisconsin. We have had 2 or 3 good snowfalls that haven't melted. My shoveling muscles are in good working order. I did get the snow blower out for the driveway this afternoon. It just adds to the challenges of getting around for Maggie. We were wondering if they make little ice grips for her crutch legs. She did take a good spill on Saturday, and landed on the knee of her shorter leg. Nice bruise.

School is busy for her. She has been healthy since the cold she had a couple of weeks ago. Her overprotective mom relaxed a little and let her go on a sleepover Friday night. She was quite beat on Saturday, but in a good way. I went out for dinner with Betsy on Friday night.

Today, Betsy came over for most of the afternoon and brought her 2 five month old kittens with her. They are adorable. We closed the doors to the den and let them loose. Tigger was surprisingly good while they were here. He got extra quality kitty time tonight so that he doesn't feel like we have neglected him. He was upset Friday night about Maggie being gone and was quite vocal all night while he was looking for her.

I need to go make her lunch and set up her pills for the week.

Stay warm
Maggie and Cindy

Monday, November 28, 2005 10:47 PM CST

A quick update tonight. I talked to Maggie's Nurse Practioner, Suzy, late this afternoon and was told that the scans that she had last week were good. Whew. I manage to get very worked up around these times, so I hope to sleep tonight.

Maggie is pleased we don't have to go to the hospital for a few weeks. So am I. I am planning on having a phone call with Suzy later this week to further rest my mind.

Betsy and Uncle Phil were here this evening. Betsy hung "her" ornaments on the tree.

Maggie and Cindy

Sunday, November 27, 2005 9:49 PM CST

Another great and very busy week.

Monday we went to see Kandace, the prosthetist. Maggie and Kandace worked on some of the issues that Maggie has had with using her prosthesis. She is still having some pain issues. And other issues.

Tuesday we had the 100 day post transplant workup at Children's. We got stuck in a huge traffic jam on the way to the hospital. We got there and Maggie went to Nuclear Medicine and had her port accessed, blood drawn, and the radioisotope injected. Maggie is so involved in all that is going on. She asks such appropriate questions. Then to Xray for regular films, and a CT scan. Lunch and then a bone scan. Followed by clinic.

We don't have any results from the tests yet. The Thanksgiving weekend has probably delayed us getting results. I will call tomorrow morning to remind them to call me.

Wedsnesday Maggie and I made the pies and a dip for Thanksgiving.

For Thanksgiving, we went up to the Shack, which is about 90 minutes from here. There was about 4 inches of snow on the ground up there. Betsy and I took a nice walk in the woods. We saw turkey, deer and bunny tracks. The girls got in the hot tub twice. It was a wonderful day. Tuttie and Betsy hadn't been up there since the new deck with the hot tub and greenhouse had been added, and the floor redone on the north porch. It is such a special place. While we were having our pie and coffee, we saw a huge flock of wild turkeys about 10 feet in front of the cabin. I went rushing to the window to see them and managed to scare them away.

We spent the rest of the weekend doing a little Christmas shopping, putting up decorations, and relaxing. Maggie is still battling a cold, and I have managed to get it. Uncle Phil brought us a beautiful wreath for the front door this evening. We have the tree and village up. More to do yet.

Let's hope for good reports tomorrow.

Ohhh, Tigger always gets kittenish when the Christmas tree goes up, but this year he has decided to sit under the tree and look up at the lights and ornaments. He likes the soft tree skirt. When I go to get the camera to take his picture he dashes away. (As fast as a 19 year old cat can dash)

Maggie and Cindy

Sunday, November 20, 2005 7:56 PM CST

Just when I think all of the bugs are out of the site, something new comes along to confound me. Case in point, when I sign on AOL as me I see one set of pictures on the picture page. If I sign on as Maggie or Phil, I get the current updated pictures. I can't explain that one at all.

Busy week. We had parent-teacher conferences on Wednesday. Maggie is doing well in school. I am very proud of her for getting caught up and staying caught up in school. The middle school is a great place.

Thursday night Maggie and I went to the 11:59 PM showing of "Harry Potter and the Goblet of Fire" at the Fox-Bay. She didn't have school on Friday because of conferences. The movie was very good and lots of fun to be there for the first one. We got home at 2:45 AM.

Friday we went out to Mayfair with Betsy in the evening.

Yesterday we went to Target with Tuttie and then out for supper. Maggie went to the Middle School musical, "The Fiddler on the Roof" with some of her friends.

She has a sore throat and the start of a cold today. I'm not sure if she is going to school tomorrow. Tuesday is her day for her 100 day post transplant work-up. We will be at CHW all day. She doesn't have school Wednesday on. We are going to the shack for Thanksgiving with Tuttie and Betsy. Maggie and I are making the pies (pumpkin and pecan) and an appetizer.

Chris came to visit this afternoon, and Uncle Phil stopped in on his way home from the shack.

Happy Thanksgiving.
I can't begin to count my blessings, they are too numerous. I feel the support and prayers of all of our friends and family. They help me so much. Thanks to all.

Maggie and Cindy

Monday, November 14, 2005 1:28 PM CST

I tried to update pictures and text last night, no success, it seems better this afternoon. Maybe I was too exhausted from the excitement of Peacock Fest 2005. But then, the activities are not open to me, as I am not a peacock. But there was lots of whooping, some Olympic events, and tons of laughing going on. I raked leaves.

We got in to see Kandace at the end of the week, and she made some adjustments to "Bob", but Mags is still having lots of discomfort and pain. She will be doing some desentitization exercises and next week along with her scans they will X-ray the residual limb.

Very busy weekend, with all of the Peacock activities. Saturday night Maggie and I went to get fabric for her current sewing class. Sunday she felt sort of rotten in the morning, but perked up enough to go see "Chicken Little" at the Fox-Bay with Betsy in the afternoon. Uncle Phil stopped by on his way home from the shack and Chris and DeAnn came over in the evening. Plus homework to do.

Frost outside this morning. Tigger isn't interested in being Jungle Kitty when his little paws get cold. He is in his basket in front of the heater, or on someone's lap most of the time.

I moved pictures around and added some new ones on the picture page.

Maggie and Cindy

Tuesday, November 8, 2005 9:43 PM CST

I'm hoping that my problems in getting journals entered are over. So here goes.

As I mentioned last entry, Maggie has been having more pain at the amputation site. Dr. King has fused the tibia and fibula together there to give the leg more stability. But Maggie's tibia is deciding to grow along with the rest of her. We had clinic today, and he came up to see her. We will try and get the prosthetic adjusted where it is more comfortable for her. If that isn't possible he will have to operate on her leg and shave off some of the extra bone growth.

It is a great and wonderful thing that Maggie is continuing to grow, especially with all of the chemo she has had. She just likes to be different, and make people scratch their heads.

In two weeks she will have her 100 day post transplant scans, and some extra Xrays of her leg. I will call Kandace in the morning and try to get in earlier than our scheduled appointment next week. Her lab work today continues to be stable. She saw Diane, the PT, to work on some endurance and strengthening exercises.

Then home for homework, dinner, and her sewing class. Betsy also stopped by.

This weekend the peacocks are coming. I don't know if I should alert the police to be on guard, or move breakable objects out of the way.

Today was another beautiful fall day.

Maggie and Cindy

Sunday, November 6, 2005 7:29 PM CST

I'll try and update tonight. No promises on whether or not it will work. It has been a week since I have updated. Maggie continues to get to school every day. They had standardized testing for three days this week. I liked the no homework aspect some, but I guess I do like it when she has work to do in the evening.:)

It was great not to have to go to clinic this week. Tuesday is our busy day, with clinic, PT, and Maggie's sewing class. She finished her skirt in sewing class on Tuesday night. She wore it with pride to school on Weds, as did some of her friends who are in the class. This section of class ended last week, but tomorrow I will go sign Maggie up for the next session.

We have stayed busy with tasks here in the house and enjoying the beautiful fall weather we have been having. We went out for breakfast with Tuttie this morning, and it was windy and very chilly. I got to have my fall fix of pumpkin pancakes.

Maggie has been having some more pain with her prosthetic. We have an appointment with Kandace next week, but we may have to go sooner. I think there will be continuing adjustments with the prosthetic, especially as Maggie is continuing to grow.

We spent the afternoon with Betsy, going to a Christmas boutique. Uncle Phil stopped over this evening. Chris came over to see Maggie and help me get a mattress upstairs yesterday. I have taken the bed out of the dining room, and have the dining room table back in place. Since Maggie came home from the hospital after the transplant, she hasn't slept downstairs.

Stay warm
Maggie and Cindy

Sunday, October 30, 2005 12:58 AM CST

continue to have problems getting the journals to enter on Caring Bridge. Please bear with me.

Maggie had a great visit to clinic on Tuesday. She gets to go to every two week appointments now!! Then we went to Physical Therapy with Diane, where she and Maggie had a chat about Maggie doing her exercises on a consistant basis. Diane is very pleased with the amount of time Mags is wearing her prosthetic.

Wednesday was an activity morning for the Middle School, prior to Teacher's Convention. Maggie took a book along for the roller skating acitivty, but I think she did very little reading, and a lot of socialilzation. She wore "Bob", and took her crutches and not her wheelchair to the activity. Afterwards, she went out for lunch and then over to a friend's house.

Thursday we went out for lunch with Betsy and Tuttie. Then Tuttie, Maggie and I went to the Milwaukee Public Museum for the chocolate exhibit. We also went to the streets of old Milwaukee, and the butterly wing.

Friday Maggie had an appointment with Kandace, the prosthetist. She made some adjustments to "Bob."

Saturday we went up to the shack to see Phil and Paul and get some hot tubbing in. The colors were beautiful. I had a nice long walk in the woods. Followed by great Wisconsin brats on the grill. (Eat your heart out Julie Schleck)

Today is trick or treat. Our block is having a get together during the trick or treat time. Maggie was going to stay home and hand out candy, but now she is planning on doing some canvassing of the neighborhood with a friend.

Happy Halloween
BOO
Go Badgers!!!
Maggie and Cindy

Sunday, October 23, 2005 9:28 PM CDT

Sorry it has taken me so long to get the page updated, but either my computer is messed up, or the Caringbridge server is having trouble. I think we could blame it all on Wilma. (The Hurricane)

Maggie had a good week at school. She continues to build up tolerance in the prosthetic wearing. When we went to clinic on Monday the nurses were very excitied to meet "Bob". Mags was thrilled to have her PICC line pulled, but not so thrilled about the flu shot.

She had her sewing class on Tuesday night. Betsy came over for dinner that night and we took advantage of the beautiful fall weather to cook out. The trees have been amazing. There is a tree that I drive by on my way to and from WFBMS that looks like it has been dipped in crimson.

We continue to make slow but sure progress finishing Maggie's room. I got a few more things hung this weekend, and we found a chair at Pier One. Thanks to Tuttie for going and scouting it out and funding that addition to the room. I have to get it all finished, because I was informed tonight that the peacocks are coming to visit in the beginning of November. The Peacocks are counselors of Maggie's from camp.

The weekend has been cold and rainy. We had Tuttie and Betsy over for pancakes yesterday morning, and then we went to a craft fair at Dominican High School. Maggie wanted to do crafts all day after we got home.

While I have been out and about during the last week I have run into alot of friends who have told me that they use the website to check in on us all of the time. I am so thankful to have this method of keeping people up to date. Now I will try and get all of the lurkers to sign the guestbook again!!

Go Badgers!!
Maggie and Cindy

Wednesday, October 19, 2005 6:29 PM CDT

Hello Hello! Maggie here. The server for caringbridge is all goofed up, so here is another try at getting an entry in. First of all, (transition ms. Lynch!) we went to Children's Hosp. a day early (Monday) because we my PICC line cracked. When we got there, they said just to have it taken out. So they did and after the pain was done being inflicted (not on purpose) (Vocab word Ms. Lynch!) They decided that they might as well give me the flu shot while we were there (oh joy) and I am still sore in my arm, 3 days afterwards. Monday, Tuesday, and today I have woren Bob, the prosthetic, (intergection, I think.)to school. Betsy was just here helping us decorate Halloween cookies. We might go see the movie Elizabethtown later this week. (Orlando Bloom!!!!!!!!!!!!!!!!!!!) Thats it for now.
Happy Fallish weather,
maggie

Sunday, October 16, 2005 9:51 PM CDT

What a beautiful fall weekend. Sunny and breezy. Crisp.

Saturday, Maggie went to the movies in the afternoon with Betsy. They went to see "Corpse Bride" at the Fox-Bay. Then they went over to Chris' to have him check something on Betsy's car. I ran to Wal-Mart and then came home and finally got the Halloween decorations up. Betsy stayed here for dinner and we watched yet another chick flick.

Today we made some headway on finishing up Maggie's room. I had been stalled at getting pictures hung and the mirror up. Tuttie came over and helped arrange things. It is always better to have some extra help. Then Betsy and Maggie went to dinner at Chris and DeAnn's. Tuttie stayed and had supper with me, and Phil stopped in on his way home from the shack.

This evening we had a surprise when Maggie's PICC line started to leak above the cap. I clamped it off, called the HOT unit, and was told we can wait until the morning to come in and have it checked. It seems like we always have things happen on Sundays.

Today marks three years since Maggie was diagnosed with Ewing's Sarcoma. It seems like an eternity somedays, and then others it feels much shorter. I know that our lives have changed in many ways. I also know that the support we get from our family and all of our friends (including our Caring Bridge friends) has made this journey better. Thank you.

Maggie and Cindy

Friday, October 14, 2005 9:22 PM CDT

Today was a delightful day. It was sunny and in the low 70's. We went out to Children's Hospital of Wisconsin this morning and Maggie had a session with her physical therapist, Diane. She was very impressed with how well Maggie was doing with her prosthetic.

Then Maggie went to school for the rest of the day with Bob(which is what she has named her prosthetic). She took the wheelchair, due to the logistics of negotitating the hallways with her crutches, Bob, and the ever present 20+ pound backpack.

Tuttie stopped over this afternoon, and we enjoyed the beautiful fall weather and had a glass of wine out on the wonderful patiolette. Betsy came over this evening and we watched a chick flick. She just left.

The nausea continues to come and go. All of the lab work that has come back so far has been negative. That's good.

Tigger spent the evening sitting between his two favorite people, Betsy and Maggie.

Here's to a restful weekend.
Maggie and Cindy

Wednesday, October 12, 2005 8:57 PM CDT

During our visit to clinic yesterday, Suzie did alot of poking and prodding, added some more labs, and tried her best to figure out the reason for Maggie's increased nausea. I am getting up earlier in the morning to give her some Zofran, and then letting her sleep for a half an hour for it to kick in before I get her up for the day. This morning she said the nausea was "a little better." Due to the nausea, she was unable to get her IV fluids stopped and her PICC line pulled, as we had hopped. And her PICC line was clotted again, so she had to have TPA instilled into it, and then wait an hour. I think a trip through Childhood Cancer is a true lesson in patience.

I ran Maggie home from the hosptial, and she had her dinner that we had phoned ahead to our house for Uncle Phil to pop in the oven. I was there about 10 minutes before Chris came, and then I turned around to go back to Wauwatosa for the Lance Armstrong Foundation sponsored presentation on survivorship issues. A very good program. There will be three more programs sponsored by this grant dealing with long term issues for survivors of childhood cancer.

Maggie went to her sewing class over at Lydell, and Chris picked her up and brought her home and got her tucked in bed. That was a big help.

Maggie went to school today, had a Community Service Club meeting after school, and then she went to the faculty/student soccer game. Then home for homework, and visits from Uncle Phil and Betsy. Can I say again how much help my family is?? Immeasurable. (Is that a word?)

Maggie's appointment tomorrow with the prosthetist is after school. Friday morning out to Children's for Physical Therapy. Whew.

Tigger got out this morning when I was getting the newspaper. He had a hard time deciding if he wanted to be Jungle Kitty in the drizzle. The allure of the grass to nibble on won out. (For about 2 minutes) He has now decided that the best thing to do if someone is on the computer is to sit on the keyboard. That's one way to get some attention.

Ohhhhhh Ahhhhh (that's me looking at the trees changing colors)

Maggie and Cindy

Tuesday, October 11, 2005 12:50 AM CDT

Sorry for the late update, but I have had trouble getting on to the update page for Caring Bridge.

After our little trip to the ER on Friday, we just came home and hit the hay. Mags was very brave for the shots of the VZIG. Her favorite ER nurse, Emily, who used to work on the HOT unit, was her nurse, which made it bearable.

Saturday, Maggie went out for breakfast with Chris and DeAnn, to a movie in the afternoon with Chris, and she and I hit the bookstore later in the afternoon. Then we came home and watched another Netflix movie, Sahara.

Sunday was homework and hanging out until we went out for dinner at Roots with Tuttie, Betsy, Phil and Paul. Paul's birthday is in the summer while they are in Canada, and mine was during a hectic time, so this was to celebrate our birthdays. We had lots of fun. Maggie wore her prosthetic and impressed all of us. The restaurant had lots of stairs and she did them like a pro. She still is using crutches while walking with the prosthetic.

Yesterday was school and mom stuff for me. Today Maggie woke up with pain in her leg and generally feeling yukky. She stayed home from school. We will be leaving in about 10 minutes for our weekly appointment at clinic. She has had intermittant problems with nausea and vomiting this week, so I am glad to go. Tonight Maggie has a sewing class through the Rec dept, and I am going to a Lance Armstrong Foundation progam at Children's about issues of childhood cancer survivorship. Chris will come over to get Maggie to her class and bring her home.

Maggie and Cindy

Friday, October 7, 2005 9:34 PM CDT

Hello There! It's Maggie with the "exciting" news that I've been exposed to chicken pox!!! I came home from school where they had given us all notices saying that there was someone at school who had Chicken Pox. Oh Joy. We called the Oncology Clinic and they said to come to the E.R. Again, Oh Joy. So we went and it turns out that I needed to get 3 shots that were intermuscular (if that is the proper term, whatever it was it went in pretty deep and I'm pretty sore) I guess whatever it was that they stuck in me was some kind of thing thats kinda like a vaccine but not really because I cant get that for a year or something. Dont you just love my terminology? My language teacher is going to talk to me about it tomorrow, Im sure. After (a transition for Ms. Lynch) we left the E.R, we decided to get some dinner at Panera. There we ran into my dad and my stepmom, DeAnn. (appositive for Ms. Lynch) We ate with them and then headed home. Thurs. we go out to Hanger to see the prosthetist. (is that what that job is called???) and Tues. we go to Onc. Clinic. Fun Fun.

Happy Weekend, (SLEEP IN!)
Maggie

P.S- Tigger coaxed Cindy into turning the heat on today so I guess he is Persuasive Kitty now.

Thursday, October 6, 2005 2:13 PM CDT

This is the third time I have tried to enter a journal today. The first time, Tigger was trying to help by sniffing my hands and the keyboard and he exited me out of the program. The second time, I hit the wrong button. I hope that the third time is a charm. He has wanted to be with me all of the time today, sitting on the computer table while I was on the computer, helping me to do laundry. I think that it is because it got cold overnight with temps dropping from the 80's to the 50's and he wants me to turn the furnace on. No way.

The Caring Bridge server has been overloaded in the evenings also, so daytime is a better time for me to type.

Tuesday Maggie had a good appointment in clinic. Her lab values continue to remain stable. We are trying to get her off of the IV during the night, and she and Suzie (the nurse practioner) and I made a verbal contract about fluid goals for this week. Once she gets the IV at night stopped, she can get her PICC line pulled.

This morning we went to see Kandace, the prosthetist. Maggie got to bring her finished prosthetic home. Now she will need some physical therapy. We go back next week to have a check on things.

The trees are starting to turn here. Even driving to the appointments is good, because I get to see the fall foliage. I have always made my daughters nuts with the ooohs and aaahs I do over the changing trees.

It's the least I can do to make them crazy. (Tee Hee)

Maggie and Cindy

Monday, October 3, 2005 12:35 AM CDT

I tried to get on the Caring Bridge site to update last night, but the server was too busy!!

Yesterday we went to the Celebraiton of Life, sponsored by Children's Hospital of Wisconsin for Childhood Cancer Awareness month. This is the third year we have gone to this celebration. It doesn't seem fair that there are so many kids affected by cancer, but when you realize that they are all survivors, it means alot.

We spent the rest of the weekend rather low key. A friend had given us a Netflix membership, so Maggie and I got to watch two fun movies. We really liked Uptown Girls, and Cheaper by the Dozen was a good laugh too. We are going to try and watch lots of movies during the month long membership!!!

Maggie still gets very tired from a full week of school. And she still has episodes of nausea. We had a rerun of her pills on saturday morning. I wonder why I still have buckets all over the house and in the car. Hmmmm.

Betsy and Peter went to the celebration with us. Tuttie was over on Sunday morning, and Chris and DeAnn came by Sun night.

We have clinic tomorrow afternoon, and Thursday morning an appointment at the prosthetist.

Beautiful fall weather makes for a kitty who thinks he is a kitten again. He wants to go out in the evening and be Jungle Kitty. In the evening he is more brave about where he will go. We have decided he needs to be in direct observation when he is outside. Maggie is worried about him getting hurt. He is so old his vision is very poor.

Maggie and Cindy

Wednesday, September 28, 2005 6:46 PM CDT

Yesterday, it seemed as if we would never catch up with the clock.

Due to traffic, parking, someone being a little late coming out of school, we were about 15 minutes late to clinic. But it was a good thing I brought a book, and some homework for Mags. We were there from 1:15 until 4:20. Her PICC line had clotted off in one lumen, so she had to have TPA to bust the clot. We were able to see alot of friends while we were in clinic. On Sunday is the Celebration of Life for Childhood Cancer Awareness Month. Lots of Maggie's old and new friends will be there. It is a chance to catch up with people, have fun, and dance to a great DJ. The DJ is our friend Jessie's dad. We look forward to seeing people there.

Other than the fact that Maggie has some cold/allergy action going on, her clinic appointment went well. We are back with our friends in the oncology clinic. Another step forward.

Today Maggie went to school (of course). I went over to Tuttie's and installed DSL for her. Then I ran Maggie's leg out to the prostetetist to be laminated. We get it back next week. I came home and did some housework and waited for a delivery from the home care company of Maggie's IV fluids. Then my housecleaning team came. So the house looks great!!!

Uncle Phil came over this afternoon, and Betsy came after work. She is still here spending quality sister time. Maggie said that in one of her classes they get to share good things that have happened to them, and she always shares after a visit from her sister.

Here's to nice fall days.
OH! A Tigger update is needed. He loves fall, and going outside. Tigger was a very sleepy kitty this morning. He said "Meow" when Maggie left for school.

Maggie and Cindy (Betsy and Tigger too)

Monday, September 26, 2005 10:11 PM CDT

Can you tell what we did today from the picture at the top of the page? Maggie did a great job at her fitting for her prostetic today, and we had a great surprise and support when Uncle Phil came to watch and cheer Maggie on. She got to bring the prosthesis home today to keep until Wednesday when it has to go back for some more adjustments.

Using the prosthesis will take some getting used to. Just getting in the car after the fitting was fun. Maggie isn't used to having the bottom part of that leg or the foot to swing in the door, so bang! She wore it for a couple of hours this afternoon, and another hour this evening when Chris and DeAnn came over.

We have a 1pm clinic appointment tomorrow, so Maggie will get to go to school for the morning.

We had a very rainy day yesterday. I may have to cut the grass one last time! Today was beautiful fall weather.

I added another picture to the picture page.

Happy Fall
Maggie and Cindy

Saturday, September 24, 2005 8:17 PM CDT

Maggie did a great job going to school for the whole week. She (and I) were both exhausted by the end of the week.

We slept in until about 9:30 this morning and got up and had breakfast. Maggie had some money burning a hole in her wallet, so we headed out to Mayfair to do some girl shopping (makeup, look at shoes, clothes, and jewelry).

Betsy came over on Friday afternoon, and she and Maggie went to the pet store to get some things. Betsy is getting two kitties, and wanted to get some food and toys. Maggie had heard in school about some volunteer rescue people who are going to help in the South after the hurricanes. She spent some of her money on things for the animals.

Betsy came over this afternoon and the girls had sister time watching a movie. Chris was here this morning. The girls are going over to his and DeAnn's for dinner tomorrow.

Monday we have a fitting for the prosthetic leg. Tuesday is clinic.

Thanks for the feedback about the new main page picture. I posted a very cute one on the picture page also.

Maggie and Cindy

Thursday, September 22, 2005 7:51 PM CDT

Maggie continues to plug along, going to school every day. I can tell by today (Thursday) that she is worn out. She is having a hard time getting her homework done tonight. Everything is just taking a little bit longer. It is a good thing that the weekend is coming up so we both can sleep in.

Last night we had quite a thunderstorm. It was very noisy in the middle of the night. I was awake for a couple of hours and watched some TV coverage about Hurricane Rita. When I went back to sleep I dreamt about a friend's daughter who's name is Rita. She is a very petite girl, and somehow in my dream I couldn't figure out why such a petite girl could generate such a large hurricane. My dreams are always very entertaining. Sometimes the nurses at Children's wanted to know what I was dreaming about because it is always good for amusement.

Uncle Phil came over this afternoon while I ran to the grocery store. Chris was here this evening.

Every where I go, the last few days, I run into parents of other WFBMS students. They all tell me how proud they are of Maggie and how good it is to see her at school.

Today's Tigger update tells of a kitty who went outside this afternoon, and was VERY scared by the wind. And the height of the little bit of green grass I have left.

Thanks for checking in.
Maggie and Cindy

Tuesday, September 20, 2005 9:40 PM CDT

Clinic went well this morning. Maggie is able to have her IV fluids stopped while she is in school, so she won't have to take the pump and backpack with her. She had to promise to drink plenty of fluids. She did very well with that today. We were at clinic at 9, and I dropped her off at school by 11.

Her labwork continues to improve. Lynnette said that as long as Uncle Phil is not showing any signs of infection he can visit. Which is good, because he and Maggie needed to get a visit in this afternoon. I had to run to the drug store to get a snack for Maggie's STAR (homeroom) party for tomorrow.

Betsy also stopped over this evening. I managed to unload some leftovers on her. I had made hamburger stroganoff last night, and cooked like the old days. (When Betsy lived here and Maggie had a good appetite). Maggie's appetite is improving every day, but she still has issues with some things not tasting right.

The trees are starting to turn.

Maggie and Cindy

Monday, September 19, 2005 8:16 PM CDT

Hello there.

Mags went to a full day of school, while her worthless mother did nothing productive other than go to the grocery store today. I hope this was a one day event, I just can't get too relaxed.

I talked to the health aide at school today about any viruses going around. Just one with a sore throat, fever and headache. I think that is what Uncle Phil is still suffering from. Plus he got a note in his mailbox at work that he has been exposed to whooping cough (pertussis) by one of his students. It is a good thing we have that clinic appointment in the morning.

Maggie had a friend over after school. No homework gets done, but alot of socialization takes place. Hmmmm. Like mother, like daughter.

Today's Tigger update tells of a kitty who seems to have adjusted to Maggie going back to school. He just follows me around all day.

Maggie and Cindy

Ohhh I finally got a link to the article that was in M Magazine in July. It is the second one on the links below.

Sunday, September 18, 2005 6:56 PM CDT

A nice smooth weekend here, clouded only by the Packer loss. Maggie is not a huge football fan, but we are trying to win her over. How can you live here and not love the Packers?

Saturday, our friends, Ted and Claudia, along with their kids Nick and Clay stopped in to visit on their way up to the shack for the weekend, and to go to the Packer game today. We had a very nice visit.

Maggie and I went to Target in the afternoon for a few essentials. We stayed in in the evening and watched the Trading Spaces that was filmed in Milwaukee. Why didn't they come here?

Today Tuttie came over to visit, and I did some neccesary evils, like changing beds, trash out, and the like. Uncle Phil is supposed to be stoppping by momentarily. Maggie hasn't had an Uncle Phil fix since Thursday. He has a sore throat, so he has to keep his distance.

School is on the schedule for tomorrow. Maggie assures me that she is "pretty much" caught up in all of her classes. I am not sure how much we will have to go to the hospital this fall. I think Maggie will be working extra hard to stay caught up.

Clinic on Tuesday.

Tigger has taken to sleeping at night on top of the backpack that houses Maggie's IV pump and the two liter bag of fluid. Maggie says he thinks it is a water bed.

Maggie and Cindy

Friday, September 16, 2005 9:35 PM CDT

Maggie continues to amaze me with her determination to get better. We went to CHW for a clinic appointment this morning. We were there from 9 until 11, and she was back in school by 11:30.

At clinic, her blood work continues to look good, even though it shows rather low WBC's as her new immune system continues to work. Her chemistries are all good. We were handed back to the oncology service for her future management. We go back to clinic on Tuesday.

Betsy came over to visit this evening. She and Maggie love to be with each other.

School went well for Maggie. She is very tired this evening. She just asked if we could go upstairs and go to bed. She probably will get a second wind as soon as we get up there.

Today's Tigger update tells of a kitty who has loved our recent temperate days. He has much more energy when it is not too hot or too cold out. Much like me.

Maggie and Cindy

Thursday, September 15, 2005 6:58 PM CDT

Today was another super day. MAGGIE WENT TO SCHOOL!!!!!!!! Only 2 weeks after the start of school, when we thought it would be much longer. She continues to amaze me. I made her promise to call me and come home if she got over-tired. I was also worried about the IV, and the logistics with that and the wheelchair. No need to worry, Maggie handled it all. Luckily, when she was in the hospital for the transplant, she got a better wheelchair. The one she had before shimmied at any rate of travel. The new one is much better.

After school, one of her friends came over to do homework, I don't think that much homework was done, but lots of chatter. That is also important.

I did four loads of laundry, some cleaning, paid bills, and went out for lunch with Betsy.

Uncle Phil came over after his haircut this afternoon, and helped the girls with their math homework. I use that term loosely.

Tigger had lots of Jungle Kitty time this morning. I think he was outside looking for Maggie to come home.

Maggie and Cindy

Wednesday, September 14, 2005 7:57 PM CDT

Today was a very momentous day. Maggie got to try on her prosthetic leg and walk!!! She was between a set of paralell bars and walked back and forth about 20 times. I had goosebumps, was crying, and got "all mushy". Maggie had the hugest smile on her face. Due to the weight she has lost during the transplant process, they will have to refit the top part. We knew this was a possibility. They rescanned her leg with the laser today to do that. So the new one will be ready in about 2 weeks. Kandace, the prosthetist, was so happy to see Maggie all smiles. They had called us this morning to delay her appointment from 10 am until 1pm as they were waiting for the foot to arrive. When we pulled in the parking lot there, the UPS truck was pulling in to drop it off. Great timing.

Maggie is doing very well the last few days. She still has some issues with her stamina. We go to clinic on Friday morning.

It has finally cooled off here. It is my kind of weather. Tigger thinks it is great Jungle Kitty weather too. He managed to get outside 3 times today. I was doing some yard work this afternoon, and he took advantage of me coming in and out.

Drop us a message.
Maggie and Cindy

Tuesday, September 13, 2005 8:21 PM CDT

Oh, it's so wonderful to be home. We left the hospital around 1pm today. It is so nice to have my mom closeby. She came over and stayed with Mags while I went to fill new perscriptions at Fitzies. The staff at the pharmacy are so helpful and concerned about Maggie. It helps alot. They go out of their way to do things for us.

Maggie got started on a new antibiotic for the UTI, and they feel the skin issues she has been having for the last week are a late effect of the high dose chemo. The dermatology team rememebered Maggie from her earlier interactions with them, and they were glad we got to go home.

We were supposed to have rain tonight, but not enough.

There was a surprise gift basket for Maggie on the front porch from the Whitefish Bay Garden Club. How sweet. With lots of fun things in it. We will have a movie night this weekend. I still don't know where the patiolette chairs appeared from.

The nurses on the HOT unit are so great. They understood how disapointing it was for Mags to be back in the hospital. They are kind and compassionate and lots of fun!!!!

Here is to a nice night in our own beds.
Maggie and Cindy

Tigger update. He is pleased to have us home. He was sitting on the stairs watching all of us this afternoon, when Uncle Phil stopped over.

Sunday, September 11, 2005 11:55 PM CDT

I did enter an update sometime yesterday, but it is lost somewhere in cyberspace. Today is day +27.

Maggie started with symptoms of urinary tract infection early this afternoon, so we were steered to the ER at Children's by the HOT nurses around 5pm, in hopes for treatment and discharge. Unfortunatley, she had to be admitted to the HOT unit, for IV administration of Amphotericin, a strong antimicrobal drug.

On Friday in clinic, Maggie had gotten the okay to start school tomorrow from the transplant doctor and nurses. She is very disappointed, to say the least, in being hospitalized.

I ran home about 10pm to get some stuff, and Tigger gave me update material when he escaped while I was taking a suitcase out to the car. Tuttie reminded me of the old trick to shake the cat treats to get the cat to come in. Works every time. With the cat I had as a little girl, you only had to run the can opener to get him to come out of hiding. Tigs has always been a dry food cat, but the sound of a can of treats being shook did the same trick, and brought him out from under the bush where he was being jungle kitty.

Let's hope this clears up soon.
Maggie and Cindy

Thursday, September 8, 2005 7:21 PM CDT

Just another day in paradise. Meaning our house. It is so wonderful to be home. It's even nice to do housework.

Maggie's appetite is improving today. Betsy came over to have lunch with us, and Maggie ate some with her, had a snack while Uncle Phil was visiting this afternoon, and had a small but decent dinner. All her pills in on time. A very good day.

The home care company dropped off part of the order at 10AM and said the second part of the order would be here within an hour. It arrived at 4:30PM. It was nice to have other visitors to break up the day.

Mags did more homework this afternoon. She is doing some crafts and watching TV right now.

Today's Tigger update tells of a kitty who has Maggie well trained. He got her to open the blinds in her room so he could look out the window, and gets her to adjust the shower door just so so that he can drink the water in the shower door track. I just fed him, and gave him fresh water.

Maggie and Cindy

Wednesday, September 7, 2005 9:01 PM CDT

While Maggie's appetite was the best it has been so far for dinner tonight, it was the only time she ate today. I've never been a person who has to push their kids to eat, so this is a new experience for me. Maggie was never a picky eater until she had chemo the first time.

Maggie is watching "Lost" on TV right now. I've never been one for scary movies or television. I think real life can be scary and interesting enough.

Tuttie stopped over this afternoon, and I took that opportunity to run to the middle school and pick up Mag's homework. She and Uncle Phil started in on the math tonight. I am so lucky to have such a helpful family. And that Phil is a schoolteacher is an added plus.

Tomorrow we have to stay home and wait for a delivery from the home care company of Maggie's IV fluids and heparin. Friday we go to clinic.

While Phil was here this evening I ran an errand and went to the grocery store. One of Phil's co-workers sent another turtle for her collection. Tonight I paid bills. Wheeeeee!

Today's Tigger update tells of a kitty who decided to go outside and be jungle kitty when I was bringing the groceries in. It was the only time in the last two weeks it has rained. I asked him if he knew enough to come in out of the rain. He said "Meow".

Maggie and Cindy

Tuesday, September 6, 2005 7:42 PM CDT

Day +22 on the transplant calender.

The day started exceptionally, with a call from linen services at CHW stating that they had found the lost Bunny-Bunny. YEAH!!! They sent him to clinic and we picked him up at Maggie's 11AM appointment. Maggie's labs were all stable. Her platelets remain stable at 30, but still no signs of bleeding so they will wait on transfusion.

Nothing else was changed, with the exception of adding one new medication. I went and picked that up this afternoon when Uncle Phil, Chris and Betsy were all here to visit.

After clinic, Maggie and I picked up the last of her needed school supplies. She talked to her guidance counselor on the phone, and they will have school work for me to pick up tomorrow for her to work on.

Maggie's appetite is unchanged from yesterday. Maybe tomorrow will be better. Everyone in clinic was so happy to see Maggie, and so proud of her that she made it home so quickly. Me too.

I think we will all sleep better tonight, with Bunny-Bunny home.

We go to clinic Friday.


Maggie and Cindy

I almost forgot a Tigger update. He is simply worn out from the festivities yesterday. Maybe getting dressed up with the ribbon was too much for the elderly kitty.

Monday, September 5, 2005 8:37 PM CDT

Today marks the 21st day since Maggie got her cells back in her autologous stem cell transplant. She has done amazingly well, and continues to kick cancer in the butt and move forward in her life.

Tigger tells everyone, Meow, and thanks for all of the positive support for the daily Tigger updates.

Maggie contiues to show improvement everyday. She had a good appetite for dinner tonight. We had a family dinner, with Tuttie, Phil, Paul, Bob, and Betsy. Tigger got dressed up with the green ribbon in honor of my 49th birthday.

We have an appointement in clinic tomorrow morning. I think that she might have a platelet transfusion, but you never know.

I got the pictures of the cat today, worked on finally unpacking from the hospital, and not much else. I will continue to try for some pictures of the glorious new bedroom.

Thanks for all of the support. Maggie is using her IPod as I write this. She has been very busy today, reading, using her computer and listening to music. Plus meds and other stuff.

Maggie and Cindy

Sunday, September 4, 2005 9:03 PM CDT

We were up early this morning for a trip out to CHW for Maggie to have a look over by the on call MD, and labs done. Her platelet count is 30, and I am to bring her in for any sign of bleeding. She will go to clinic on Tuesday.

Betsy was here when we got home from the hospital. She stayed with Maggie while I ran to the grocery store. Then the three of us sat down for a breakfast of pancakes and bacon. Maggie ate a slice of bacon, half a pancake, and some blueberries. The largest amount she has eaten since the transplant.

Tuttie came over this afternoon. Maggie and I did some serious picking up of the downstairs this afternoon. Tomorrow I think it will be the upstairs. Chris and DeAnn stopped by this evening.

We continue to be so thankful to be home. Nearly a month in the hospital, plus all of the recent world events, surely make you appreciate your blessings.

I don't know how to put it any other way than this, but in response to all of the wonderful people who have offered us meals, I have to refuse. Maggie continues to be on restrictions placed by the doctors about her diet. I appreciate all of the offers and kindness so much.

Thanks for thinking of us and checking in on us.
Maggie and Cindy

Saturday, September 3, 2005 8:19 PM CDT

A couple of times today, I nearly had to pinch myself to think we are home. I am so proud of Maggie. After we went to bed last night, I had to get up and go give her an extra hug and cuddle because I am so very proud of her.

Up and down a couple of times during the night, but so nice to sleep in our own beds. This was the first night she has stayed upstairs in her newly refurbished bedroom. I wanted her closeby in case the IV pump alarmed, and she didn't wake up. But it all went smoothly.

Chris and DeAnn came over for a visit, and Betsy was here almost all day. She is very proud of her sister too. The two of them watched a movie this afternoon.

Not much progress on the appetite front. Maggie has tried a few things, but continues to have no appetite, and her taste buds are fried. Not a problem for me, though.

And now for a Tigger update...... He is just so happy to have us home. He has spent most of the last 24 hours curled up next to Maggie.

Maggie and Cindy

Friday, September 2, 2005 8:26 PM CDT

We left the hospital at 4:30 and were firmly in the house by 5:15. It is so nice to be home, but a little scary. Maggie has two IV's running in a backpack pump. She has to stay on the heparin drip until she is 28 days out from the transplant. This is to prevent veno-occlusive disease. She also has to have 2 liters of IV fluids a day. As it has been a big breakthrough to be able to get her oral medications down over the last few days, I am not pushing the oral intake bit. They told us upfront that she will have to be on home IV fluids for a month at least.

No news on the lost stuffed animal front, but I guess there is a notice posted at Goodwill Industries Linen Services where CHW sends their laundry to be done. I talked to the evening supervisor a few hours ago and they are looking for our treasured item. When he is found, we will drive out and fetch him.

Tuttie stopped over tonight to see us, and one of my friends came by. I still don't have any clue as to the mystery donor of the beautiful chairs on the patiolette.

I'll get working on new pictures tomorrow.

We have to be at CHW on Sunday at 9:30 for labs and a visit with the doctor on call for the weekend. Clinic on Tuesday.

Here's to a good night's sleep in our own beds.

Thanks for the support
Maggie and Cindy

Thursday, September 1, 2005 9:28 PM CDT

Day +17

It looks as if Maggie and I will be heading home tomorrow. She did a great job getting her oral meds down, although we did see one capsule a second time. We have been trying alot of different beverages.

I went home and filled Maggie's discharge prescriptions, went to the grocery store and washed the linen on her bed that is in the dining room. Tigger was VERY happy to see me, but he kept looking for Maggie. I let him outside twice (for about 3 minutes each time) to be Jungle Kitty. He followed me around the house, and basically wouldn't leave me alone.

Uncle Phil came by after school, and Betsy and Chris were out tonight. I went to Krispy Kreme while they were here and got donuts for the nurses.

We have had a crisis tonight, as we can't find Bunny-Bunny, Maggie's oldest and dearest stuffed animal friend. Her nurse is summoning the laundry people right now to search for him.

Wish us luck
Maggie and Cindy

Wednesday, August 31, 2005 8:27 PM CDT

Today is day +16.

Maggie shows improvement today. Dr. Margolis is ready to send her home as soon as she can take her meds orally. She will have an IV running at home, and he will give her a trial off of TPN to see if her taste buds can kick in. So this afternoon we went out on a pass to Target to get some types of beverages to try and stimulate the appetite and taste. We also picked up some more dress up items. Maggie and one of her nurses like to put on weird costumes and prance around.

So tonight we gave in and watched the other dancing show of the summer. I think we are hooked now.

Tuttie, Uncle Phil and a friend of mine all stopped in. Paul was at the house to water for me and said that Tigger is very lonely. I know he is wondering where Maggie is.

I need to get our camera out to snap some pictures of Maggie and her nurse Katie.

Thanks for checking in.

Maggie and Cindy

Tuesday, August 30, 2005 8:48 PM CDT

Day +15

Maggie's white count and platelet count continue to hold steady. A good sign of engraftement. Her mouth and esophagus sores are healing, but we are still having the problems with everything tasting different. She is slowly trying different beverages, but without much success.

She took a walk, with a mask on of one length of the hall. She was exhausted afterwards.

Uncle Phil came to visit this afternoon, and earlier, a friend of mine I used to work with at Columbia who works here now came to visit. She had pictures of her baby to show us. Lots of phone calls this evening.

The washer on the unit broke, and I needed clean clothes, so I went to the laundromat tonight. You forget how convienent appliances are.

I am planning on hitting the hay soon. Tuttie's procedure went well, she is coming to visit tomorrow.

Maggie and Cindy

Monday, August 29, 2005 10:13 PM CDT

Today is day +14.

Maggie started the day with a trip to radiology for a CT scan of her sinuses, to check on the status of the sinusitis she had before the transplant and see if she can come off the antibiotics she has been on.

The drug rash she had from the other antibiotic has almost completly disappeared. She says the itching has gone away.

The dentist who takes the video pictures of the progess of her mouth sores said they are healing very well. Maggie's taste buds took a hit from the chemo, and while it is easier for her to swallow, nothing tastes right.

Phil, Paul and Chris came to visit. Chris brought a new installment of the Tigger diaries for Maggie to watch. He also taped a bunny that was visiting in our backyard. He probably was admiring the new chairs and wondering where they came from.

We are still aiming for going home the end of the week. Maggie has to be able to take her meds orally and do some nutrition. They are planning to give her a trial off of the TPN at home to see if her appetite will kick in there.

Maggie is in House 2 in school. We still are unsure as of when she will return to school. One step at a time.

Tuttie is having a small basal cell carcinoma removed tomorrow morning. Say a little prayer for her.

Maggie and Cindy

Sunday, August 28, 2005 10:31 PM CDT

Day +13 of the transplant voyage.

After all the excitement, and perhaps too long of a "Friends" session last night, Maggie slept in until noon today.

Phil and Paul came to visit this afternoon, along with a visit from Tuttie. Mom had also picked up some prescriptions for me and brought them out. Thanks.

Tonight we are busy watching the progress of Hurricane Katrina on television. Maggie and one of her nurses, Katie dressed up like pirates earlier and went out in the halls. Maggie has to wear a mask, but it is so good to see laughing with the great nurses here. Evelyn did a cartwheel for our enjoyment in the back hall. It has been two weeks since Maggie was out of the room.

Maggie's white count is up to 6.1!!!! Her visitors don't have to wear masks anymore, but she has to if she leaves the reverse airflow room. They stopped the nightly GCS-F doses, so her white count will probably drop a little over the next few days.

Seeing Phil and Paul, plus our rousing game of beach ball volleyball tuckered her out, so she had a nap this afternoon. It will take quite awhile to get her stamina and strength back.

Keep leaving us messages. Maggie is spending more and more time on the computer during the day, as she is feeling better.

Here's to a great week. If all contiues to go well, we might be able to go home by the end of the week.

Maggie and Cindy

Saturday, August 27, 2005 9:35 PM CDT

Lots of exciting things on day +12 of our journey!

Maggie's white blood cell count, which is one of the parameters they will use to measure engraftment, took a big jump today from 0.2 to 2.4. She continues to get nightly infusions of Growth Colony Stimulating Factor, which is the Neupogen I had to give in a shot after her previous chemos.

Maggie is also feeling better, although it is hard for her to admit it. She still is unable to eat, due to the sores in her mouth and esophagus.

The highlight of the day was the return of Uncle Phil from Canada. Maggie spotted him in the hall and said, "I get the first hug." What a great thing.

Tuttie, Betsy and Chris also came to visit. All of the visitors help to make the day go faster.

Any one have any info about the who/what/where/when/why of the new patiolette chairs???

Maggie and Cindy

Friday, August 26, 2005 8:40 PM CDT

It is day +11 on the MS Schumann.

Maggie seems to be improving and getting stronger a little every day. Her WBC count is measurable at present, which is better than a few days ago. She felt good enough to spend some time on the computer today, read a couple of magazines, and spend some time laughing with Betsy.

Chris was here this morning so that I could go register Mags for school. She won't be able to start or go to school for awhile, but it is great to know her schedule and have her counselor working on a tutor for her.

After I went to middle school, I went home to pick up a few things and have quality Tigger time. To my surprise, there are two new wicker chairs on the patiolette. I have no idea how are where they came from. If any one knows, would they drop me a line? They are beautiful.

I talked to Uncle Phil a couple of times today, and he is at the Shack tonight. Maggie and I look forward to seeing him tomorrow.(Paul too).

Tigger is busy shedding at the house. He looked everywhere for Maggie when I was there.

Maggie and Cindy

Thursday, August 25, 2005 9:19 PM CDT

It is nice to be in the double digits of day +10.

Maggie's rash is worse today, has spread all over her back and onto her chest and face. The dermatologist and the transplant doctors both feel that this is a drug rash, related to one of the antibiotics she has been on.

Her throat pain is somewhat worse today. She hasn't had as much energy today as yesterday. Her physical therapist brought some pictures to share with her from when she went to camp last weekend with her dog.

The highlight of both of our day was when we got a call from Uncle Phil saying he was on his way to Milwaukee from Canada, and would be here by Saturday. Maggie's face absolutely lit up.

Tuttie was here for most of the day. Maggie and I appreciate this very much. Chris and Betsy both called. Tomorrow morning Chris is coming to stay with Maggie while I go and register her for school.

As usual, thanks for checking in.
Maggie and Cindy

Wednesday, August 24, 2005 9:59 PM CDT

Today is day +9 on the MS Schumann route to beat Ewing's. We have been at CHW since August 8th, except for a 6 hour pass home on the 14th. Our room feels like a home away from home.

Maggie has had a good day today, but with some interesting devlopments. She was out of bed the most she has been since right after the transplant, but she has devloped a very itchy and horrible rash. They have stopped the morphine and switched to a different pain medication on her pump, and tonight they decided to hold an antibiotic and have the dermatologist see her tomorrow. She is very beat this evening.

Tuttie was here for a nice long visit, and I took a meander around Mayfair, and went to the bank.

This evening Chris brought out installment two of the Tigger diaries. He looks furry and very happy to see someone. Which is how he ususally is. That is comforting to both of us.

We stay and wait for Maggie's mouth and esophagus sores to heal and for some WBC's.(White blood cells) She is getting the medication she did after her other chemos to boost their production. But luckily for her, I don't have to give her a shot, she can get the Neupogen in her IV.

Thanks for all the messages.
Both Maggie and I will miss Megan's bunny Freckles.

Maggie and Cindy

Tuesday, August 23, 2005 10:26 PM CDT

Ahoy there shipmates!! Today is day +8.

Maggie says the pain is worse to day than yesterday. The pain is from the mouth and esophagus sores as a result of the high dose chemo, and the fact that her bone marrow is currently non-functioning. Hopefully all that will change within the next week as her stem cells engraft in her bone marrow.

While her bone marrow is non-functioning, we were warned that she will need blood products to replace those that her bone marrow is unable to replenish at present. She had a platlet infusion tonight.

Tuttie came for most of the day, Betsy came after work an brought my mail out to me. Chris came this evening and brought Maggie a video he shot this evening of Tigger. She loved watching that.

I hope that as Maggie starts to feel better that we canget some serious room decorating done for our current nautical theme.

We both love all of the messages. I read them to Maggie during the day, and she checks the computer herself if she is feeling well enough. (She didn't today.)

Wish us calm seas.
Maggie and Cindy

Monday, August 22, 2005 9:46 PM CDT

Cruising along on the MS Schumann day +7.

Maggie says that the pain is worse today than yesterday when you ask, but she never complains. One tough cookie. She sure doesn't feel well, but brightened up enough this evening to read her email. She mostly spends her day in bed, but she has PT, lots of nursing stuff, the TV, and mom to keep her busy. She doesn't feel good enough to do her usual plethora of arts and crafts. I spent the last few days reading a cheesy novel. It was a nice escape.

Her nurses from the clinic upstairs come to visit every day. Everyone tells us that this is the hard part, waiting for the white cells to come in. She has so few white cells, that they were reported on her morning lab work as <0.1.

Chris has Tigger and mail duty this week, so he called from the house while he was there giving Tigs some quality cat time, and Maggie talked to Tigger. He said Meow to her.

Maggie and Cindy

Sunday, August 21, 2005 10:12 PM CDT

The captain of the ship MS Schumann, Maggie, asked me to say hello to everyone tonight. Her throat is very raw from the mucositis, and it hurts to talk, or do anything. Thats how thing are on the MS Schumann on day +6 on transplant schedule.

Maggie is so involved with everything going on. She ahd good questions for the doctor when he came in to see her. She wanted her pain medication slightly decreased so that she isn't so sleepy. She can still push a button to get more if she needs it.

Tuttie came out and spent the day with us. Betsy and Peter, and Chris and DeAnn also came by. Uncle Phil called from Canada. He and Paul are due back a week from today. Maggie misses them terribly.

I did some knitting, some reading, and our laundry. Mostly I just spend time with my Maggie.

Thanks for checking in on Maggie.
Keep leaving us messages.
Maggie and Cindy

Saturday, August 20, 2005 8:09 PM CDT

Welcome to day +5 on the MS Schumann cruise through stem cell transplant land.

Every day I think she will have bottomed out in the feeling rotten department, and every day I am wrong. The mucositis is quite horrible, and they increased her pain medication to help. She is very stoic, and won't ask for pain medicine often, so they are giving her a low dose at a continuous rate. She is still unable to eat, so they started TPN and lipids through her IV line today.

Good things though; she is feeling better since the increase in pain meds, and went on her computer this evening for the first time in a couple of days. Betsy, Tuttie, Chris and DeAnn all came to visit today.

Maggie's daily blood work is showing the results of the high dose chemo. This morning she had very few functioning white cells left in her system. Now is the waiting game for her stem cells to engraft in her bone marrow and start to work.

You should see the smile on my face every time I read a message from a lurker.

Cindy and Maggie

Friday, August 19, 2005 8:27 PM CDT

Maggie's spirits are a little better tonight, I think because she had a nice long visit from Betsy. We decided to make the room into a cruise ship. The MS Schumann. Betsy painted the windows accordingly. We think we are in dry dock right now getting a tune up to the ship's immune system, and then we will sail away. Maggie said that her upset stomach is really seasickness.

Tuttie was also here today. She brought out my mail for me.

Maggie has mucositis, which is a side effect from the high dose chemo. She is shedding the inside of her mouth, and throat. Ugh. So she is in too much pain to eat. And has no appetitie. They will probably start IV nutrition tomorrow. She has spent most of the day in bed. It is very hard to see my cute little Maggie so miserable. We were watching TV coverage of the tornado in Stoughton WI last night, and we both got choked up when a lady found her daughter's cat in the rubble of her house. The cat was alive, but very scared.

I have added a new link to the bottom of the site. It is for Marrow.Org. I was looking for some answers last night, and found this easy to understand site. Check it out.

And for those of you who did't do this before, check out this.www.thesurvivormovie.com

Thanks for checking in on us
I love it when lurkers sign in
Cindy and Maggie

Thursday, August 18, 2005 7:21 PM CDT

Today is day 3.

After I finished the entry for last night, Maggie had an episode where the chemo showed it's full force. She continues to feel terrible all day. She has no energy, and is very sad. It's okay to be sad when you feel so rotten. She is also sad to be missing the beginning of school. Today was registration day. School starts on September 1st. I have already talked to her guidance counselor about the need for a tutor at the beginning of the school year to keep her on course with her classmates.

A friend from camp popped his head in to say hi today. Lots of phone calls. Tonight there is a tornado watch, so Maggie and I can watch the progression of that on TV.

Tuttie is coming to visit tomorrow.

Cindy and Maggie

Wednesday, August 17, 2005 10:13 PM CDT

Welcome to day +2 from stem cell transplant land.

I was having lunch with my dear friend today, and I had to confess that keeping this journal, which is helpful to our friends, is also very theraputic for me.

Mags was feeling pretty rotten this morning, but perked up this afternoon when I came back from my outing with some snacks that are approved for her food saftey issues. We also found out it was spa night on the HOT unit, and after I got a massage, one of the Neroli people came in, masked up, and gave Maggie a manicure. She was delighted.

Tuttie was here almost all day, and Chris and Deann came out to watch a movie with Maggie this evening. I went over to Mayfair and tooled around.

We both adore all of the messages. Thank you Colleen for the Tigger update. I bet he loves having you being his designated feeder this week.

Cindy and Maggie

Tuesday, August 16, 2005 8:13 PM CDT

Maggie and I are watching the Teen Choice Awards on TV and kicking back. Some of the days here seem longer than others, but I have to remind my self that this is just the beginning.

This is day +1 since the re-infusion of Maggie's stem cells. She is getting weaker from the chemo and all of the business that her body has to attend to in order to have those stem cells engraft on the bone marrow that has been wiped out by the high dose chemo she recieved.

Tuttie and Chris came to visit today. Tuttie and I have taken to walking over to Froedert Hospital for lunch for a change of scenery and cuisine.

Maggie had Physical Therapy in the room today with Diane, the PT who has worked with her in the past. They are trying to keep Maggie's strength up and prevent any complications from being in bed so much.

There are lots of other things to fill our day; oral cares to prevent mouth sores, pills to take, phone calls, vital signs, and arts and crafts.

Tomorrow I am going out for lunch with my friend Julie Schleck who is coming in town to see me. She is in Madison from Salt Lake City to see her dad. Tuttie will be staying with Maggie while I go to see her. I haven't seen Julie in a couple of years. I have been looking forward to this all summer.

I am glad I got some of you "lurkers" to sign the guestbook. Thanks for checking in on us.

Cindy and Maggie

Monday, August 15, 2005 10:07 PM CDT

Today is day 0, for transplant day. Maggie was premedicated before the infusion, and at 12:30 this afternoon she got her stem cells reinfused. She slept through the whole deal, while Tuttie and I and Maggie's nurse, Theresa, all kept a watchful eye.

The side effects of the high dose chemo are evident, with a loss of appetite, and lots of nausea for Maggie.

She had some great good wishes from all of the staff here that know her so well. Whenever I was out in the hall today, another one of the staff would wish me good luck on Maggie's big day. The HOT unit is very busy.

A dentist affiliated with the study Maggie is on for use of light to treat and prevent mouth sores came and took pictures of the inside of her mouth today. He will be back to take serial pictues. He said this treatment is proving to be very effective.

We have had our "Friends" dose for the evening. We were laughing so hard at one of the gag reels my sides hurt.
That is very good therapy.

Sign the guestbook!!!
Cindy and Maggie

Sunday, August 14, 2005 9:01 PM CDT

Today is day -1 on our autologous stem cell transplant schedule. Tomorrow, Maggie will get her cells reinfused. These were the cells that were extracted from her with the apheresis machine and then spun down and stored at the Blood Center of Wisconsin in May.

Maggie and I slept in this morning, and then got ready for the hightlight of our day. We got to go home on a pass for about 5 hours. Maggie and Tigger took a nap together, we had lunch from Kopps with Tuttie and Betsy, and Chris and DeAnn came over for a visit. It was a great day. On the way back to the hospital Maggie thought it would be a great idea to go to the drive-through at Krispy Kreme for doughnuts for the HOT unit nurses. They thought it was a great idea too.

I'm not sure what time they will do the infusion tomorrow. Or what all that involves.

Thanks for the positive messages.

Tigger update: He was such a happy kitty today with Maggie home. He knew right where to nap this afternoon. Curled up with Maggie.

Cindy and Maggie

Saturday, August 13, 2005 9:52 PM CDT

The chemeo has begun to take it's toll on Maggie and she feels sufficently pukey. A long day, brightened by our nurse securing a pass for us tomorrow. We will get to go home tomorrow for a few hours after Maggie's noon antibiotic. She will have to be hooked up to an IV, but that is minor. She needs a Tigger fix. I was planning on going home for a bit tomorrow afternoon, and it will be wonderful to have Maggie with me.

We are watching a movie on the closed circuit movie channel that CHW has. She had her light therapy earlier.

After the stem cell re-infusion on Monday, Maggie will be isolated in the room for a long time. It will be great to go home for a bit.

We love all of the messages. Tomorrow night you will get a Tigger update!!

Cindy and Maggie

Friday, August 12, 2005 9:21 PM CDT

(early Sat am correction) Maggie will get her cells back on Monday, notTuesday as I started below, guess I needed some sleep!!

We were up at 7:30 this morning, and the day has seemed really long to me, but Maggie's spirits are still excellent, and she is still feeling good. Not good enough to venture out of the room very much, and food is less appealing, but good enough to give people the business, and joke with everyone.

Right now she is watching a movie with Chris and DeAnn. Nellie and Tuttie came to visit today. My college roomate, Kate, came and brought her world famous brownies. I plan to run home on Sunday for a bit when Tuttie comes to visit. Get in some quality kitty time with Tigs and pick up a few things that we forgot.

I did our laundry today. There is a machine right across the hall from Maggie's room. Which is a good thing, because I am such a slob. And anytime one of her stuffed animals hits the floor they have to be dried in the dryer for 30 minutes to kill germs.

Dr. Margolis said this morning that the chemo that Mags will get tomorrow, Melphalan, is less well tolerated, nausea wise, than the one she is getting now. He expects Maggie to feel pretty rotten by Tuesday. He said that she will know by then that she is here for the transplant. And I thought this was our summer vacation:)

I am going to sign off now, and do a little reading. My attention span has limited me to magazines of late, but I am trying to get into some books. Maggie and I have both always loved to read.

Plus I need to order up some positive thoughts and prayers for Tuesday. That is day 0, when she gets her cells back.

Cindy and Maggie

Thursday, August 11, 2005 9:09 PM CDT

Today is day -4 on the schedule for Maggie's Stem Cell Transplant. On day 0 she will get her own stem cells reinfused. She has one more day of the Busulfan chemo and then she will get the Melphlan for one day and then a day of rest before the infusion.

She has been allowed to go out of the room so far, because her counts have not started to drop to badly. She is still feeling pretty good. She started on a Light Therpay study tonight that is supposed to help her mouth lining regenerate sooner to help with the mouth sores.

They had a Packer season kick-off party this afternoon. Maggie had some snacks, did some crafts, and got a great Packer Tshirt. The MACC fund supplied the stuff for the party.

A friend came out today with some Kopps for Maggie while she can still have outside food. After Maggie's counts drop she can only have hospital food or food prepared by me. Or commercial food; this is for food saftey issues.

I went out this afternoon for a drive while Maggie stayed with my friend. It helps to get out of the hosptial for a few minutes. It reminds me that there are other things going on in the world.

Thanks for all of the messages.
Cindy and Maggie

Wednesday, August 10, 2005 10:03 PM CDT

I just asked Maggie how she was feeling so that I could post it on the page, and she said "okedoke". She is certainly more tired than she was the other day. But she did stay up until midnight up to hijinks with her nurse.

Her levels of the chemo she got were "perfect" according to Dr. Margolis. We do like to be perfect.

We had lots of visitors today, while we still can. Tuttie came and brought lunch, Betsy came after work, and Chris came this evening.

I can't say enough good things about the care that Maggie recieves at CHW. The nurses answer all of my questions very patiently, and they are great with their patients. The last time Maggie went through chemo, I felt that it changed how I practice as a nurse. I know it has affected me even more this time.

Thanks for listening, and checking in.
Maggie and Cindy

Tuesday, August 9, 2005 10:31 PM CDT

First day of chemo is almost over. Maggie did really well, but they tell me this drug has different side effects than the ones she has had previously. She had all kinds of blood work drawn at different intervals this morning to check the levels. I guess these are sent to Seattle for monitoring. I ask so many questions that I drive everyone crazy.

Maggie is in the room that she will stay in for the whole transplant procedure. Until her counts start to plummet, as they will from this high dose chemo, she can go out to the playroom and the common area. So she spent most of the afternoon out there doing her ususal ton of art projects. She wove a basket, painted another ceiling tile, thought up a whole complicated game, and entertained alot of people.

She also doesn't have the food restrictions that she will have later and post transplant, so she enjoyed some delicous fast food items.

Betsy landed a new position as a secretary at the construction company that is remodling Bayshore Mall. Yeah!!!

Tuttie is coming to visit tomorrow. We had lots of phone calls today. If you want our direct line to the room, call me on my cell phone, and I'll give you the number.

When Maggie hits the intense phase of the transplant, she will be in Transplant isolation. She is in a negative air flow room, and and only healthly adults who okayed by the staff will be allowed to visit.

Thanks for checking in. We check the messages a couple of times a day, they mean alot to both of us.

Cindy and Maggie

Monday, August 8, 2005 11:06 PM CDT

We are settled into room 5518 on the HOT unit at CHW, having our bedtime dose of "Friends". Old habits die hard.

Betsy stopped over on her way home from work this morning to see Maggie and wish her good luck.

We got to Clinic at 11, had labs drawn, and then unfortunately learned that they were running behind in Interventional Radiology. Maggie's PICC line that was scheduled for 1 was done at 3PM. From there we were admitted to the HOT unit. Maggie took a nice nap this afternoon from all of the nice meds she got during the line placement.

She got started on Dilantin this evening to guard against seizures that can be one of the side effects of one of the chemo agents they are going to use.

Tomorrow she will be started on more meds to protect her from infection during this long process. She will also be started on IV heparin to ward off veno-occlusive disease. She will also begin the chemo drug Busulfan. She will get that every six hours for 5 days.

We talked to Tuttie and Uncle Phil tonight. Tuttie has a doctor's appointment tomorrow, but will be here on Wednesday.

Keep the prayers and good thoughts coming. Thanks for all the positive messages.

We also had lots of learning tonight about infection control, medications, and lots of other transplant stuff. My brain is soooo tired.

Maggie misses Tigger already. They had a nice long cuddle this morning. She had the cat hair on her clothes to prove it.

Cindy and Maggie

Sunday, August 7, 2005 7:51 PM CDT

Maggie and I have spent the last couple of hours packing our voluminous bags, getting ready for the long haul at CHW.

Peacock #1, Michelle, came to visit today from Oakbrook, a Chicago suburb. She and Maggie had a great day, lots of laughter. Our neighbors had brought over some shiskabobs for us, so Tuttie came by and we had a wonderful lunch.

Tuttie continues to have alot of pain and discomfort from the case of shingles she had about 8 weeks ago. They talked to Maggie about being vigilant in taking her meds post-transplant, or she could break out in shingles. As we have so recently experienced, they can be quite horrible. Maggie said "don't worry, I know I don't need that on top of everything else."

We go to clinic at 11AM. If all goes as planned, she will have her PICC line placed at 1PM. I guess we get a pass for the afternoon, but she will need to be in the hospital Monday evening to get started on an anti-convulsant, as one of the chemo agents can cause seizures. Then 6 days of chemo, a day of rest, and then she gets her cells back. This chemo will be stronger than she had before, to knock her bone marrow out completly, so that her stem cells can take over and engraft in her bone marrow.

Wish us luck and send us prayers.
Sign the guestbook

Cindy and Maggie

Saturday, August 6, 2005 9:47 PM CDT

Right now, Maggie and I are watching a cooking show on TV, biding our time until her 11pm antibiotic. Then we will crash in our respective beds.

I think we are spending the weekend trying to cram lots of fun in before the long hospitalization. After the morning dose of antibiotic, we went out to Mayfair and met a friend for lunch at the Cheesecake factory. Yum. Then we hit the mall and spent a long time at Sephora looking at girly stuff and trying on makeup and perfume. Lots of fun. Maggie and I came home smelling really good.

We had another antibiotic and supper, then this evening I did some disenfecting and packing. All items going with us to the hospital have to be wiped off with disenfectant wipes. Clothing just needed to be washed as usual. I am glad that I am trying to do all of this in a little less of a rush than last weekend.

Tomorrow, the Peacocks are coming to visit for the day. I am so thankful for these great friends that Maggie has.

Tigger has decided to show his love for us by constantly being underfoot. Maggie was coming downstairs this evening after her shower, and he thought that it was entirely unnecessay to move from the center of the stairs, where he was sprawled. He just looked up and said "Meow".

Cindy and Maggie

Friday, August 5, 2005 10:18 PM CDT

We went to CHW this morning. Her lab counts show that her infection is responding to the antibiotics. Good news. As of right now, we are still on for Monday. She still isn't feeling the best, but things are getting better every day.

We came home from the hospital, had antibiotics, and waited for a delivery from the home care company of more supplies.

Then we went to the craft store. Then a trip to wander around TJMaxx, and a stop at Best Buy. We ran into a friend of mine from Columbia there. We got a lock for the laptop, I got the new Faith Hill CD, and a few other things. We stopped on the way home and got a made to order pizza to cook for dinner.

Mags took a nap while she got her 5pm dose of antibiotic, and then we enjoyed the pizza. She has been busy planning a peacock party with 2 of her counselors from camp who are coming up to see her on Sunday. Watch out Whitefish Bay!!!

Todays Tigger update. He has been sitting on his astroturf rug almost all evening. Do you think that is because he likes to be Jungle Kitty?

Maggie and Cindy

Thursday, August 4, 2005 10:13 PM CDT

Maggie says she is feeling "not great". I am glad that we have an appointment in clinic tomorrow morning. I don't know if it is just from the surgery, or if it is the antibiotics, she just is still sort of icky. But then again, when we were upstairs this evening so she could have a shower, she was being very silly. That's my girl.

Doing the antibiotics here is working well. Maggie fell asleep before I finished up the 11pm dose, and slept through the 5am dose alltogether. I dozed on the couch for the hour while it was infusing, and then went upstairs and back to sleep for a number of hours when it was done.

Tuttie stopped over this afternoon, and Betsy came over this evening for dinner. A very helpful friend came and stayed with Mags today while I went to pick up some meds at the pharmacy and went to the grocery store.

9:30 labs and 10:00 clinic in the morning. Then home to wait for the home care company to drop off more doses of the IV antibiotic and other supplies for the IV.

Let's hope things stay on schedule for Monday
Thanks for checking in

Oh!!!!! I almost forgot a Tigger update. He is asleep on the den floor right now. He had jungle kitty time today, and kept the friend who stayed with Maggie entertained. He was having a very vocal time. She didn't realize that meant he wanted to be fed.

Cindy and Maggie

Wednesday, August 3, 2005 8:45 PM CDT

Maggie has improved steadily throughout the day, although she says she still feels like she has jelly legs from the anesthesia. We were discharged from CHW at 2:15 this afternoon.

Tuttie came over right after we got home with some soft foods for Mags. Ice cream sandwiches, blueberries, pudding, raspberries. We are very lucky to have my mom so close to us. We live on the same street, only 5 blocks apart.

The home care company dropped off Maggie's supplies a little before 5 and the home health nurse came to help with the IV pump for the 5 pm antibiotic. She will get an IV antibiotic every 6hours. It will take an hour to infuse, and then I can cap off the attachment to her port and she isn't hooked up to the pump all of the time.

We have a clinic appointment and labs on Friday morning. I hope to go back to sleep after the 5am antibiotic and catch up from the last few days.

Chris and Uncle Phil phoned to check up on Maggie this evening.

Tigger is a very happy kitty this evening. Not knowing how long we would be gone when we left on Sunday, I had reset the thermostat up to 85 degrees, not wanting to air condition a cat for a month. (Cats like warmer weather) I guess it was a little too hot. The air conditioner has been running non-stop since we got home, and Tigger was sprawled out, instead of how he is usually curled up in a ball. He has spent the entire afternoon and evening on Maggie's lap.

Cindy and Maggie

Tuesday, August 2, 2005 9:09 PM CDT

It has been a very long day, but Maggie is sleeping and feeling "less horrible" as I type this, so we are moving forward.

She was up and about this morning, and we had Betsy and Tuttie to keep us company. Betsy had to leave before Maggie left for the operating room, but Tuttie stayed with me to see her off.

She had her maxillary and ethmoid sinuses opened and cleaned out with fiberoptic endoscopic sinus surgery. They sent cultures to the lab for testing. It takes a couple of days for the final reports on those.

We went to anesthesia holding at 4pm, she went in at a few minutes before 5, and she was back in her room on the HOT unit at 7:25. She said she felt horrible, but she has had some nausea medication and some pain medication through her IV and now she is sleeping. Evelyn, one of her favorite nurses is here tonight, taking excellent care of her.

So we will head home tomorrow (hopefully) on IV antibiotics and come back on Monday. They already have her PICC line placement rescheduled for Monday afternoon.

Betsy went to feed Tigs this morning, and she said he is lonely. I bet he is busy shedding.

Cindy and Maggie

Monday, August 1, 2005 3:22 PM CDT

Hello from Children's Hospital of Wisconsin.

This morning Maggie had another CT scan done of her sinuses to check on their progress. They are worse, so she will have surgery tomorrow to have them cleaned out and cultures done for the definitve definition of the particular bacteria that is being so troublesome. The ENT physican who saw her last week is on vacation this week, so Dr. Flannery will be doing the surgery late in the afternoon.

The plan is then to send her home on IV antibiotics until next Monday when we come in for the PICC line placement and the start(hopefully) of the stem cell transplant process.

Dr. Margolis says that he has had to do this type of thing with other patients pre-transplant and that it makes for a less chance of infection post transplant and a better overall course of events.

Mags and I have been up since 8 this moring, and we had a long night last night. Lets hope for a better one tonight.

This afternoon she has been busy with the art therapist and some other patients in the dayroom doing tons of projects.
It helps her pass the time, and art is her favorite thing to do.

Cindy and Maggie

Sunday, July 31, 2005 7:21 PM CDT

This morning, I was trying to wake Maggie up to take her morning meds, when I noticed that she was hot. We did our ususal fever reduction methods (drinking water, deep breathing), but to no avail. She had a fever of 102.2. I certainly wished then that I had packed yesterday, but luckily, Betsy was over and she helped me put a few things in suitcases.

So Maggie was admitted to the HOT unit this afternoon and started on stronger antibiotics. We don't know yet how this will affect the planned start of the stem cell transplant process. We will know more tomorrow.

I had a pleasant surprise when I went to type this message, and Maggie's laptop computer detected a wirelesss network for us to use. No dial up for us!!

Keep us in your thoughts and prayers.
I'll keep you updated.
Cindy and Maggie

Saturday, July 30, 2005 9:25 PM CDT

Betsy is over visiting her little sister right now, they are hugging goodbye. It is so sweet.

Maggie and I went to see "The March of the Penguins" this afternoon at the theater. I am definetly in procrastinate mode about getting ready for the hospital. I know that it is a futile wish, but I wish I knew for sure if we were going in or not on Monday. It all depends on how Maggie is feeling (whether or not her sinus infection has cleared). I guess I just need to face the facts that I have to get ready.

I have all of the laundry done, people lined up to cut the grass and feed the cat. I just need to pack.

Betsy is in the middle of moving this weekend. We always like to keep things lively.

Tigger is busy getting lots of lap time.

Cindy and Maggie

Friday, July 29, 2005 9:25 PM CDT

We started the morning with a trip to the doctor for Cindy, of all people. Time to get my sinus infection treated.

Maggie and I were doing some more work on her room this afternoon (hanging curtains, putting books in bookcases) when they called from BMT clinic to let us know that the whole process has been moved up a day. We will be admitted on Monday now, for the PICC line placement and then Tuesday will start the chemo. Of course this is all dependant on whether or not Maggie's ear and sinus infections have resolved by then.

Nothing like a little more pressure to get me mobilized. Thank heavens a friend stopped by with a Cosmopolitan for me this evening.

Today's Tigger update:)He just scurried (and he can still scurry, even at 19) upstairs, because I had to do a little vaccumming. Now the truth is out. I like to vaccum when I'm stressed.

It's a beautiful summer evening.
Cindy and Maggie

Thursday, July 28, 2005 8:41 PM CDT

Maggie and I both think it is just "one of those days". I had a four paragraph entry typed, hit the wrong button, and deleted it. EEEEEK!

This morning, we had a call from Dr. Margolis. He had reviewed the CT scans that Maggie had yesterday, and was concerned about the severity of her sinusitis. He had started her on antibiotics for it and an ear infection on Monday. He had reviewed the CT scan with an ENT doctor at CHW, and he wanted to see her this afternoon to make sure she wouldn't need surgery before the transplant.

So we went out to see Dr. Kirchner in the ENT clinic at CHW, where he took a fiberoptic endoscopic look up Maggie's nose, after numbing it first. The good news is that her sinuses are open and draining. But he is not sure that the infection will have totally resolved by next week.

So we have our appointment with Dr. Margolis to get the final check on Monday. If everything looks good, then we proceed on Tuesday.

After today's trip to Wauwatosa, we went to see Tuttie. She had finished up a roll of film this morning and gotten it devloped. I will put a picture of our cute little patiolette on the picture page this evening.

Tomorrow I have an appointment with my doctor. I have managed to get Maggie's cold, and resultant sinus infection. Plus, my asthma has kicked in. I need to be healthy if we go ahead with the transplant as planned next week.

Tigger was a patient kitty while I wrote this the first time, but now he wants to be fed.

I also need to get my but in gear about getting ready for the hospital. I work best under pressure. If you have any doubts about that, ask my college roomate, Kate.

Cindy and Maggie

Wednesday, July 27, 2005 8:28 PM CDT

We were out in Wauwatosa, at CHW, by 8:15 this morning. First Maggie got her medi-port accessed and some more blood drawn, and then she was injected with Technicium for the later bone scan.

Then a chest X-ray, and two glasses of oral contrast to prep for the CT scans. Next, Maggie had CT scans of her sinuses, chest, and abdomen. We topped it all off with the bone scan. With the amount of times that Mags has had all of these procedures, alot of the Radiology staff is well aquainted with her. They are all pulling for her.

We went over to Froedert Hospital, next door to CHW, for lunch and a change of scenery. They have Starbucks coffee in the cafeteria, which makes my day. Maggie and I sat in the cool and breezy sunshine outdoors on their patio for awhile.

Then we (plus Chris) met with Dr. Margolis and went over all of the risks and benefits of the stem cell transplant. Maggie asks very appropriate questions. Chris and I are just scared. Maggie, Chris and I all signed the consent forms. Maggie will also be involved in a study for the use of a special light treatment for the mouth sores she is almost certain to get as a result of the chemo.

We have an appointment on Monday with Dr. Margolis to make sure Maggie is in top form for the transplant. If she is, the plan is to admit her on Tuesday, have the double lumen PICC catheter placed that morning, and go from there. She needs to have three places for central Intravenous access for the transplant procedure.

Mags and I hit Target on the way home for some hooks for her closet. Then I came home and did yard work. Betsy came over to visit with Mags and they went to the Fox-Bay this evening to see Willie Wonka.

Maggie is matter-of-fact about all of the side effects and risks of treatment. I guess I am too. I feel it is her best chance of beating the beast.

Tigger update: Maggie and Betsy had him out this afternoon for Jungle Kitty time. When he gets scared (usually by a breeze or a car driving by) he runs to the door and waits to be let back in.

Send us some good wishes and prayers.
SIGN THE GUESTBOOK!!!!!!!

Maggie and Cindy

Monday, July 25, 2005 9:05 PM CDT

We had a long and tiring day at CHW today. We started off at 8:30 in clinic, where Mags had her port accessed, and lots of labs drawn.

Then to Physical Therapy for an evaluation with Chris, the Physical Therapist who has worked with Maggie before. She has things planned for Maggie's long hospitalization to keep her strength up.

Next were Pulmonary Function tests, where Maggie was in an "isolation booth" type of contraption for awhile. We thought it would be a good idea to flood it like on Fear Factor. Too bad I forgot my camera.:)

We progressed to an Echocardiogram to study her heart function, and then she had a psychological/cognitive evaluation.

To round out the day, Maggie had an appointment with Lynette, the Nurse Practioner for the BMT (Blood and Marrow Transplant) Clinic. Dr. Margolis also came in to see her. They think her cold has progressed to a sinus infection, and decided to start her on antiobiotics. She also had the fun of a nasal culture. This is to rule out any nasty types of viruses or infections lingering in there.

Due to the cold/virus/sinus infection there is a chance they will postpone admission next Tuesday for the transplant process. We will know more later this week. We go back to CHW on Wednesday for CT scans, a bone scan, X-rays, and more labs.

Lynette also talked to Maggie about her being an active part of her transplant process. Maggie is very involved and knows all that is going on with her health care. I know that this will be to her benefit.

Today's Tigger update tells of a kitty who was much better behaved last night. He kept his job as Maggie's foot warmer. He doesn't like the hot weather we have been having. He isn't interested in going out to be Jungle Kitty.

Cindy and Maggie

Sunday, July 24, 2005 9:03 PM CDT

Happy Birthday Betsy!!!!

It's so nice to have my Maggie girl home. She is worn out from all of the fun at camp. And with a cold to boot.
She went to Chris and DeAnn's for a bit this afternoon, and came home for our birthday celebration for Betsy.

Betsy, her boyfriend Peter, and Tuttie came over for dinner. We had tenderloin, green beans, corn on the cob, fruit salad, and birthday cake. Maggie had made some great presents for Betsy when she was at camp, and she got her some charms when we in Chicago last month. I got her some kitchen items, and Tuttie got her LOTS of great stuff, like soaps, a gas card, a wallet, and many more. We even had a phone call from Uncle Phil to talk to his nieces.

We have to be at Children's at 8:30 in the morning for a full day of workup for the Stem Cell transplant. On the schedule for tomorrow are labs, pulmonary function tests, an echocardiogram, a cognitive evaluation, a nutrition evaluation, and an exam with the nurse practioner for the Blood and Marrow Transplant Service. We will be up bright and early.

We have Tuesday off, and then lots of radiologic tests on Weds.

Today's Tigger update tells of a kitty who was in lots of trouble last night. He came into my room twice in the middle of the night looking for Maggie. He even jumped up on my bed. My room and especially my bed are definetly off limits for the mischevious cat. This afternoon he has been napping all of the time. Probably to rest up for more hi-jinks tonight.

It is very hot and humid here.

Cindy and Maggie (and Tigger too)

Saturday, July 23, 2005 10:07 PM CDT

Maggie is home from camp, exhausted but happy, having had a wonderful time, and having made alot of new memories. Camp is such a positive experience for her. I am so thankful that there are such places as COSI, with all of it's wonderful volunteers, that give their time to all of these kids.

She has a cold, which she usually manages to get at camp. I think that the two weeks of fun and and little sleep can tire anyone out.

While she was gone, I had some great visits with friends, many dinners out, and spent alot of time working on Maggie's new room. She came home to all of the new furniture assembled and the floor refinished. Chris put a custom closet in for her. We moved some of her belongings in there this afternoon.

Betsy was here when Maggie got home, and Chris and DeAnn came over to visit. Tuttie stopped by this afternoon.

We are celebrating Betsy's birthday tomorrow. I can't believe she will be 22.

Tigger is so happy to have Maggie home. He jumped up into her new bed this afternoon, and christened it with cat hair.

I will update tomorrow with our plans for the work-up this week.

Thanks for checking in.
Cindy and Maggie and Tigger

Sunday, July 10, 2005 7:31 PM CDT

As you can see from the top of the page, Maggie is happily in peacock land at camp. The picture on the top is of Maggie and Michelle, her favorite counselor.

We had a nice overnight trip to Lake Geneva, complicated only by a case of food poisoning (Cindy). Never a dull moment. Maggie was so happy to see all of her camp friends, and all of the staff. Alot of the medical staff this year is from CHW, which makes me much more relaxed. Some campers and staff hadn't known about Maggie's relapse and were saddened at this news.

Betsy was a huge help for Tuttie and I, getting Mags settled in her bunk, talking about how much fun camp is, and getting to know all of Mag's friends. Today she got to come to the world famous pork chop dinner.

We got back early afternoon, and I started right in on some cleaning I wanted to wait until Mags was out of the house for. Tomorrow morning, the man comes to refinish the floor in her new room!

I'm off to drop Maggie a line, and get some sleep. I am going to call Uncle Phil too, and fill him in on his niece.

Cindy

I put some new camp picture on the picture page too!

Thursday, July 7, 2005 8:11 PM CDT

I'M GOING TO CAMP IN 40 HOURS!
And so the countdown to camp begins, with Maggie updating the journal tonite.

Yesterday we began packing and I finally fixed my Ipod. Way too much technology in that thing. Betsy was over for a few hours, and we went to Panera with her for dinner. Chris and DeAnn stopped by that evening.

Today we finished packing the important stuff, like snacks and cards. :) Then the floor people came over and said that they would be able to do it all on Monday. Then we were off to Physical Therapy for Cindy's knee. But the main attraction of the day was me getting two fillings in my teeth. That was not fun. They numbed it up at 4:15 And I just got the feeling back in my lip. Not a pleasant experience. But I did get a chocolate malt from Kopp's out of it though.

Have a happy (and hopefully not to humid) summer!
Maggie and Cindy

Tuesday, July 5, 2005 8:51 PM CDT

The Fourth of July was very rainy here in the morning, but it cleared up later in the day. At 3pm, Mags went with Chris and DeAnn to Racine to go to Jeannie's house for supper and then to the Racine Yacht Club for fireworks. I had her take her EMLA with her to put on in the car on the way home, and then I gave her shot when she got home. She was all wound up when she came home, and had a hard time getting to sleep.

Today we went to the Dentist for part of the Stem Cell Transplant work up, then out to Children's for blood work. I talked to CHW in the afternoon, and we can stop her shots, but she has to go back in on Friday morning for a platelet count, because her platelet count remains low.

We also got the okay for Mags to have two cavities filled on Thursday. She has to have antibiotics beforehand as a preventative measure. They are concerned about messing with her gums and releasing bacteria in an immunosuppresed patient. So the dentist's office was also in contact with the BMT nurse. (Blood and Marrow Transplant). I again have to thank the people at the dental office. They go out of their way to take care of Maggie.

This afternoon, I had a physical therapy inital evaluation for my lingering knee issues. I will go twice a week until Maggie comes home from camp.

A great friend dropped dinner off for us tonight. And some other friends dropped in to visit. I need all the support I can get right now. Thanks.

This evening has been filled with more camp prep. Duffle bags down from the attic, making sure Maggie has enough of her meds, planning a final Wal-Mart run for the morning. I would love to go to Target (it's my fave place) but that ususally ends up being too expensive.

Sign the guestbook!!!!!!!!!!
Cindy and Maggie

Tigger update......He had about four trips outside this afternoon. It is cool and breezy and makes for a kitty thinking he is a real tiger. We know better, as sometimes he gets scared by the wind.

Sunday, July 3, 2005 8:00 PM CDT

Today is a beautiful day here in the land of cows and cheese. Still on the less active side, due to low counts. Maggie had some friends come over and visit this afternoon. I like being the mom who gets to ask "hey, what's going on in there?" when I hear the girls squeal. It is a different mom feeling than the mom telling Maggie to drink more, take her pills, and get ready for her shot.

We also went to Fitgerald's pharmacy to pick up more Neupogen, and then stopped over to see Tuttie. Her shingles are slowly healing. She is still having lots of pain. We also managed to get a visit to the coffee shop in.

No further signs of the raccoon family. Chris checked for them this afternoon when he came to see Mags. Maggie just told me she had smushed two bugs in the last few minutes and declared that she is the bug smushing wonder. She still calls me to do it if they are big and crunchy.

I almost forgot the Tigger update. He was jungle kitty again this afternoon. I had to open a new bag of cat food when I fed him this evening, and so now he is a very contented cat. Does a fresh bag of cat food really make that much of a difference?

Happy Fourth of July
Cindy, Maggie and Fat Tigger Cat

Saturday, July 2, 2005 8:38 PM CDT

Right now, Maggie and I are watching the Tour de France on television. She emailed me the picture of Tigger and herself from her computer to mine, and I managed to get it on top of the page. Sometimes I am amazed at how easy the computer stuff is, and then the next day I can't set up a sprinkler for Tuttie's lawn. Go figure.

Maggie still is having a hard time getting and staying asleep at night. It should get better in the next few days. It is from the steroids she gets with the chemo.

Today Maggie is a media star. There is an article about her on page 67 of M magazine (Milwaukee lifestyle-northshore edition) and there is a picture of her and a quote in the newsletter that came today from her camp.

We went swimming at Nellie's house this morning. I said we would stay 30 to 40 minutes and we were there 2 and a half hours. Some of my old co-workers came to visit. It was so nice to see them. One of them brought some dinners for Maggie and I. We had one this evening. It was delicous.

Maggie is going to spend the 4th of July with Chris and DeAnn. The crowds at the celebration in Whitefish Bay would be too much for us. Mostly for me, worrying about her with her low counts.

Tonight's Tigger update: He is thrilled to have his picture on the home page of the website. So thrilled, that he had to take a nap. Remember he is an elderly cat. (19)

Cindy and Maggie

Friday, July 1, 2005 9:36 PM CDT

Last night, while I was waiting for Maggie to come home from Chris', I went to get something out of the garage, and was surprised by a large (to me)animal. I had Chris check it out when he brought Maggie home, and it seems that a momma raccoon and 2 of her offspring were living in the rafters of my garage. We got the mamma to leave (via a hole in the soffit), but she went back as soon as we went inside. This afternoon the whole family is gone. Always excitement at our house.

This afternoon we went to have Maggie's first meeting for her prostesis. Kandace, the prosthetist, spent lots of time with Maggie, with suggestions for desensitizing the end of the leg, and talked to Maggie about the types of things she likes to do, to get a better idea about the type of prostetic she needs. We go back next Friday for another appointment. Betsy went with us for the appointment today.

Yesterday we got the schedule for the transplant workup. It will take place on July 25th and July 27th. We will do the consent meeting on either July 29th or August 1st. She will be admitted to begin the transplant process on July 2nd. There will be 5 or 6 days of intensive chemo followed by a day a rest prior to the reinfusion of her stem cells that were collected in April.

Tonight's Tigger update. He managed to get two trips outside in today. During the first he played Jungle Kitty again. The second time he was Scaredy Cat. He wanted to come in after a few minutes. Now he is all tuckered out, and sleeping on top of a chair in the den. Maggie just had her shot. It is cool here, we are sitting in the den with the windows open.

Happy Fourth,
Cindy and Maggie

Thursday, June 30, 2005 8:25 PM CDT

The highlight of our day on Wednesday was finding some Peacock feather earrings. Maggie has a great relationship with a counselor at the camp she attends. They call each other Peacock #1 and #2. Maggie and I had spotted some peacock feather earrings in a magazine, and we thought that they would be the perfect accessory for the two of them for camp. We went over to Bay Shore last night and got the last pair at Claire's, but they called the Mayfair store and they held the last pair there for us and we got them today.

So today we went to CHW for lab work and then over to get the earrings. Now, I think Mags has everything she needs for camp. She is so excitied she wants to start packing this weekend. We probably will. Her white count is almost non-existant, so we have to be careful. Not many platelets, too. We need the Neupogen to kick in to get some white cells.

Tonight she is at Chris and DeAnn's for dinner. She was looking forward to seeing her stepsister's daughter. I did some work in my flower garden. In a few minutes I think I will head outside to sit on the patiolette.

When Tigger had his outdoor time yesterday, it had been over a week since I had cut the grass. It hadn't rained too much, so it wasn't that tall, but he was stalking a bug like he was in the jungle. Jungle Kitty. Then I rolled the lawn mower out, and he ran to the back door, and cried until I let him in. I hadn't even started it yet.

Thanks for all of the messages.
Cindy and Maggie

Tuesday, June 28, 2005 10:07 PM CDT

Maggie and I slept in and then went over to Nellie's house for a swim. I was so good about getting sunscreen all over Maggie, especially her noggin, but of course I forgot myself. I am a little pink tonight.

Betsy was here when we came home, so we all had lunch together, and then we hit Wal-Mart for some last few things for camp. As Maggie has started doing scrapbooking, and had such rave reviews for the one she did from the ski trip, she wants to take lots of pictures this summer.

While we were at the store, there was a big summer thunderstorm. But it didn't cool off, and was more muggy afterwards, if that is possible.

Tuttie went to the dermatologist this afternoon, and got the okay to see Maggie. Yeah. She still isn't feeling up to par, whatever that is.

Maggie has been watching all of the specials on the Discovery Networks about Lance Armstrong. Tonight there was a special about people inspired by him which showcased a young man who had an amputation at about the same site Maggie did. In turn, these people inspire us. While sometimes all of the stuff on TV can be so mind numbing, I am so glad that people who are fighting this beast are valued for the hard work that they are doing. My little piece for the night, thanks for listening.

TIGGER UPDATE: At present, Mr. Cat is all curled up on the top of a chair in the den. His ears twitched when I whistled and called his name. Now he is headed downstairs for his bedtime snack.

Stay cool,
Maggie and Cindy

Monday, June 27, 2005 6:57 PM CDT

The chemo caught up with Maggie today. I had taken the car in for service this morning, and when I got home with the loaner she wanted to go to our friends restaurant for breakfast. You have to do a U-turn to get to the restaurant, and she was green and gagging when we pulled up. I thought perhaps we should skip it, but she wanted to go in. If I have learned anything, it is that the usual rules of when and when not to eat just don't apply during chemo. She ate some of her breakfast, but then we had to pull over on the side of Watertown Plank Road before we got to CHW to leave a deposit on the side of the road. She has had lots of nausea, but no vomiting with this type of chemo. Oh well. 25 minutes later she had a juice at Barnes and Noble at Mayfair. And her appetite tonite is great. Thank heavens for Zofran. It is a great anti-nausea drug.

We came home after getting some more (!!!!!) craft books, and I went to pick up my car. Then I did some phone calls, internet stuff, and we had dinner. Maggie will have her shot of Neupogen in about an hour.

Tigger has been very awake today. He is currently in the back hall looking at a wall. I said he was awake, that doesn't necessarily mean interactive.

Thanks for all of the messages. We both love them.

The other patient (Tuttie) sees the doctor tomorrow. I have not been a great nurse for her.

Wouldn't spell check be good on this program? I think part of the problem is my lousy typing skills.

Stay cool if you can,
Cindy and Maggie

Sunday, June 26, 2005 8:45 PM CDT

Busy weekend. Sort of laid low Saturday during the day, getting some odds and ends done around the house. Maggie went to a birthday party Saturday night from 6 until 10. She came home very tired, but very happy. When we were getting in the house you could hear the rain coming down the alley towards us. Great big drops. And smell it. I love the smell of a summer rain.

This morning we went over to my friend Nellie's house and took a dip in her new swimming pool. Maggie was worried about adjusting to swimming without her lower leg (even though she won't admit that now), but she did superbly. It was very relaxing and fun. Thanks Nellie and Paul.

Chris and DeAnn came over to visit this afternoon, and then Betsy came over. The three of us went to see "Bewitched" at the Fox-Bay. It was a fun movie. I loved the TV show.

Then we came home and painted our nails, more girl time. We called Uncle Phil and talked to him in Canada. What a fun day.

I saw Tuttie again yesterday. Her shingles are in the process of healing. I must admit that it was the biggest shingles outbreak I had ever seen.

Tomorrow I take my car in for service in the morning. We have to go to CHW for labs sometime during the day.

Maggie just had her Neupogen shot, and we will be calling it a day soon. She is doing the IM thing with some of her friends on her computer.

Today's Tigger update tells of a very happy cat. He got to see all of his favorite people today. I did have the scary vacuum cleaner out, though.

Thanks for checking in on us.
Cindy and Maggie

Friday, June 24, 2005 5:29 PM CDT

Oh, as I've said many a time before, there's no place like home. They told Mags this morning that she could go at 2:30, and we were getting on the freeway by 2:45. How's that for punctulaity!!

Yesterday, Maggie and Jill, the Child Life Specalist, did alot more art projects. She likes to keep busy when she is feeling good enough to go out of her room. Chris and DeAnn visited in the evening, and Maggie played video games with them. Chris brought her dinner from Culvers.

Summer is back with a vengance. It is in the high 90"s, with high humidity. Since we've been home, Betsy came over and I went to the grocery store. I also stopped to see Tuttie. You know you have a bad case of shingles when you can make the ICU nurse gasp. My family always states that I am hard to impress in the health department.

Maggie has her first appointment for fitting of her prosthesis next Friday. Dr. King and Heather came to see Maggie yesterday.

Next week will bring trips to CHW for lab work. They want to get her counts really tuned up before she goes to camp.

Camp is July 9th to the 23rd. The next week, Maggie will be at CHW outpatient for multiple tests as a workup for the stem cell transplant. They hope to admit her for the tansplant process either the end of that week, or the beginning of the next week.

Now for everyone's favorite, the daily Tigger update. It tells of a very happy feline. Maggie is lying on her bed right now, and Tigger is right up there with her. He was upstairs sleeping when we got home, and came trotting down the stairs, very vocal and happy to see us.

Cindy, Maggie and Tigger:)

Wednesday, June 22, 2005 9:19 PM CDT

Another day, another dose of chemo over. Maggie is now feeling pretty rotten. We were up alot in the night and we did manage to sleep in this morning.

We met with Dr. Margolis, the transplant doctor this afternoon. He went over the plan for the chemo Maggie will get and talked to us about our expectations for the stem cell transplant. He has been in contact with some physicans who have a study being relased on July 1 regarding transplant in Ewing's Sarcoma patients. What this meeting really did for us is strengthen our perceptions that this is the best course of action for Maggie.

We are hoping to go home by early Friday afternoon. We have a friend bringing dinner over that evening. Saturday night Maggie will be going to a birthday party in the evening, but, as usual, I will not let her stay overnight. I sincerly doubt she will feel well enough to do that anyway, that soon after chemo.

We watched Dancing with the Stars this evening and wondered if Tigger had it turned on at home. It is hard to do that without opposable thumbs. Operate the remote control, that is.

I talked to Tuttie twice today, and she is starting to feel the medicines for her case of shingles kick in, and is feeling a little better. We just don't know how we will deal with her case of Maggie withdrawl though.

Betsy and Chris came this afternoon for the meeting, and stayed for awhile and played some video games with Maggie. Betsy had baked some cookies at my house yesterday afternoon and she brought them for us.

I am entering this journal on Maggie's lalptop in our room. I think the computer will be a big help for her when she has the transplant.

Leave us a message.
Cindy and Maggie

Tuesday, June 21, 2005 9:31 PM CDT

Maggie has finished her second day of chemo, and has fallen asleep in the middle of our nightly "Friends" marathon. I will have to wake her up in a bit to take her pills. She has been feeling so good the last week, it is sad to see the chemo start to hit her and her start to feel so crummy.

She did lots of arts and crafts again today. She had painted a ceiling tile for the hallway in the HOT unit, and she finished it today, and they put it in. She likes having something she made on display. It is a turtle.

We had some friends come and visit this afternoon after I got back from the hairdresser, and Maggie and Andie played some games.

I promise to post a picture of Maggie's room when it is finished. I think it will be wonderful.

Tuttie has come down with a case of shingles. She started feeling poorly on Sunday, and it was confirmed today when she saw the dermatologist. I wish I was at home to help her. Due to Maggie being immunocompromised, they will be unable to see each other for at least a week. That will be hard for both of them.

Today's Tigger update is that Betsy went over to feed him and bring in the mail. He was her birthday present when she was three, so he is really her cat. She is the one who got him accoustomed to sleeping in a people bed. He comes right to her when she calls him, even if it has been a couple of weeks since she has seen him.

Thanks for all the messages.
I need the mail to feel connected to the world when we are here.

Cindy and Maggie.

Monday, June 20, 2005 8:30 PM CDT

We were up at 7:15 this morning and out of the house by 7:40, enroute to CHW. The lab was deserted, which is unusual. Then we went to Bruegger's on Bluemound for bagels and coffee (juice for Maggie). Then back to clinic for a 10am appointment and we were admitted to the HOT unit by 1:30pm.

Betsy came and brought lunch from Culver's and some fun surprises for Maggie from Winkie's. Her reasonsing was that Uncle Phil isn't here to provide fun for Maggie. She stayed and did arts and crafts and played video games with Maggie until 5:30.

We talked to Tuttie and Phil on the phone. It's great that he can give moral support from Canada. Chris is here to visit right now.

Tomorrow I am going to get my hair colored (oops, maybe you thought that was my real color) but will only be gone for an hour or so.

No Tigger update. He is probably looking for us right now. Or sleeping. Or shedding.

Leave us a message in the guestbook.
Check out this website if you haven't already. www.TheSurvivorMovie.com

Cindy and Maggie

Saturday, June 18, 2005 8:47 PM CDT

We had a very tiring and busy trip to Chicago, and lots of fun. Thursday we set out about 9:30 am, and drove to Schaumburg, and some of our favorite stores. Definitely the highlight of the day was meeting Maggie's counselor, Michelle for dinner at Joe's Crab Shack. Michelle (Peacock #1), is a sister of a childhood cancer survivor, and a college student. She and Maggie have become very close over the last few summers when Michelle has donated her time to Camp One Step at a Time. They talked about the fun they have had the last few years and the fun they will have this summer.

Friday we went to Ikea right when they opened, at 10 am,(actually, we were out of the hotel by 9 and used that as a excuse to go to the nearby PetSmart and look at the kitties that were up for adoption). We had a great time picking out stuff for Maggie's bedroom. We got a bed, dresser, desk, bookcase, curtains, and lots of accessories. Our biggest challenge of the day was getting the pallet and cart through the checkout. It is hard to believe that all of that stuff could fit in my car. All of the furniture comes flat packed, and you assemble it at home. Chris and Betsy came over and carried all of it upstairs for us after we got home. The floor in Maggie's room still needs to be re-finished before we assemble and move in the furniture.

Today, Maggie and Betsy went over to Chris and DeAnn's for a Father's Day lunch. Then Maggie stayed to visit with some of her stepsisters and Xavier, Joanie's son. She is bushed this evening. A couple of big days. I cut the grass, edged, weed-wacked and did laundry. Then I sat in the sun on the patiolette as a reward.

Today's Tigger update tells of a very snuggly kitty. It is much cooler here, in the high 60's.

Monday will bring labs at 8 am and clinic visit at 10. Chemo for 5 days. We meet with the transplant team on Wednesday.

Cindy and Maggie

Check out this wonderful website.
www.TheSurvivorMovie.com

Wednesday, June 15, 2005 9:07 PM CDT

Maggie and I are getting ready for our two day trip to Chicago. To add to our excitement, one of Maggie's counselor's from camp is going to meet us for dinner. Peacock #1 is so cool, and she and Maggie have planning to do for camp.

Great news from our trip to Froedert today. Maggie's wound is healed!! Hopefully no more trips for dressing changes. Dr. King will see us next week when we are inpatient for a quick check. She got the go ahead to shower without covering the wound and to swim. I want to check with the oncologists about swimming.

We went over to see Tuttie this morning. She was worried that Maggie would forget what she looked like because she hadn't seen her in a week. We had to remedy that situation.

Time for the Tigger update. Tigger is being the scaredy cat again. After 10 min being the jungle cat, the wind scared him and he was crying at the front door.

Cindy and Maggie

Tuesday, June 14, 2005 8:39 PM CDT

This afternoon the weather changed enough that is was breezy and cooler, in the 70's. Maggie and I were able to sit out on the patiolette this evening. All my pots of flowers are in bloom out there. It was gorgeous. I was able to turn off the a/c and open the windows.

Maggie continues to have a little bit of a cold/allergies. We have an appointment at Froedert tomorrow with Dr. King to have him check my dressing changing abilities. The wound is all closed and not draining at all. Let's hope for a good visit. Dr. King and Maggie have a great relationship. She gives him the business and keeps him on his toes. You can tell he thinks she is the tops. We are so lucky to have him as her physican.

We started getting things ready for camp today. Snacks, disposable cameras, sunscreen, bug spray, lip gloss, cards, purple hair spray. Things are a little different than when I went to camp.

Phil and Paul have arrived at Manitou Lodge in Canada for the summer. Phil called this morning and he and Maggie told each other how much they miss each other already.

We are hoping to go to IKEA and Woodfield on Thursday and Friday. We have hotel reservations for Thursday night. Big muscles for Cindy.

Today's Tigger update tells of a kitty who has been getting into all kinds of places he shouldn't be. Into closed rooms, under beds, trying to get out the back door. Right now he is sitting by the front door, looking out the screen.

Cindy and Maggie

Sunday, June 12, 2005 8:59 PM CDT

Maggie had a busy weekend. On Saturday her friend who lives in Finland and is back in WI for a visit came over. I took the two of them to see the movie the Sisterhood of the Traveling Pants. The girls had a nice visit.

Saturday afternoon we went to Michaels for some craft supplies. You never can have enough craft supplies, as far as Maggie is concerned. She went to a party at another friends house in the evening. She was having such a good time when I went to pick her up at 9 she conned me into staying an hour longer.

Today we slept in and then she went to Chris' house for supper. She likes to see her stepsisters, and they had the pictures from Jody's wedding to look at. She was there from 2 until 6. I did some chemo-mom stuff and a little yard work. It has been very hot and humid here, but no rain. I have lots of flowers in the garden this year, and they are very thirsty.

Right now Maggie is on the phone with her grandparents in Utah.

Maggie still has a lingering cold/allergies. She just doesn't have any stamina these days. This frustrates her very much. She wants to be busier, but gets exhausted easily.

Today's Tigger update tells of a kitty who is showing his age this weekend. It is so hot and humid he is not even interested in going outside.

Cindy and Maggie

Friday, June 10, 2005 8:53 PM CDT

School is finally out for the summer. Maggie went yesterday and today. They signed yearbooks this morning and got out at 11. Then she went to a friend's house for a last day of school party. She also had her picture taken for a article for M magazine that she was interviewed for last week. It will be in the July issue. She came home tired out but happy.

Paul and Uncle Phil came over to say goodbye before they leave for Canada for the summer in the morning. Maggie and Uncle Phil are very close and it will be hard for them to be apart this summer. Betsy and Maggie still have their phone card to use to call whenever they want.

Maggie still has a little bit of a cold. She is rather worn out. Still another good reason for her chemo to have been delayed.

Tonight's Tigger update tells of a cat who is being uncooperative with having his picture taken at present. Maggie is trying to use her digital camera to take some pictures of him. Cats sort of do whatever they want. Maybe he is worn out from all the ballroom dancing.

I got the wireless card for the computer today and it works!! I almost feel like a technical wizard.

Cindy and Maggie
Maggie and Cindy

Wednesday, June 8, 2005 8:03 PM CDT

Maggie and I are watching the summer reality series, Dancing with the Stars. She has told me that she and Tigger regularly compete on the professional dancing circuit, and that he looks really good in a tuxedo. I wonder how he pays for his dry cleaning bills to get all of the cat hair off.

Maggie got to school today. It is great that they are delaying the chemo so that she can go to camp. Sixth grade must be better than I remember, even though I was a geek and loved school, I can't rememeber liking it this much.

I got some stuff done, and met a friend for coffee this afternoon. After I picked Maggie up at school, we came home to find Betsy putting the last of my flowers in the garden for me, and a great surprise. My co-workers from Columbia had dropped off a wonderful gift basket with things for us to use during the hospitalization for the stem cell transplant. My co-workers are great people and I miss them so much.

Mags and I are about to do the dressing change for the first time. Wish us luck.

Cindy and Maggie

Tuesday, June 7, 2005 8:42 PM CDT

Today involved a trip to Froedert this morning for a dressing change, where Dr. King and Heather (his PA) handed the duties over to me, saying, "it's time, Maggie". Maggie finally had to consent to me (Cindy) changing the dressing. It is almost all healed up. Should be within a week or two. Hopefully before Maggie goes to camp.

Then Tuttie came over this afternoon so that I could go to the doctor myself regarding this lingering knee issue. He feels that I pulled a tendon and that I have tendonitis. I will call tomorrow to schedule physical therapy for myself. It really is feeling better than it did last week when I hurt it, but I got concerned because it was so swollen.

Maggie hopes to go to school for the last two and a half days. I think that would be great. Her cold is on its way out.

Mags just had a shower and has crawled into clean sheets. I changed mine while she was in the shower, and plan to hop in the shower in a few minutes and then get some sleep myself.

Tigger was jungle kitty again this afternoon, but got scared by a bird and had to come in and take a nap to soothe his nerves. His name is now changed from Traitor Kitty to Scaredy Cat.

Cindy and Maggie
Sign the guestbook!!!

Monday, June 6, 2005 7:33 PM CDT

We got to clinic this morning and Suzie, Maggie's Nurse Practioner, told us they had decided to delay Maggie's last cycle of chemo for 2 weeks so that it is closer to the stem cell transplant. As Maggie is fighting a cold, and plus the fact that they are scheduling the transplant so that Maggie can attend camp, we thought this was a great idea.

So the last cycle of chemo has been delayed until June 20th. We will meet with the transplant team on the 22nd in the afternoon to have our pre-transplant meeting.

Summer arrived in Milwaukee with a vengance yesterday. It was 85 yesterday and 86 today with very high humidity levels. Phil came in yesterday and informed me I needed to fire up the A/C. I did as requested, and feel much better.

I would you to read yesterday's entry to get the Tigger update. Don't forget to sign the guestbook.

Cindy

Sunday, June 5, 2005 9:12 PM CDT

We are just finishing up packing for planned hospital admission tomorrow for chemo. Labs at 9 and clinic at 11. We are also supposed to meet with the transplant team to discuss the stem cell transplant.

Maggie has come down with a cold. I don't know if this will delay the admission. She feels pretty pathetic at present.

Yesterday Maggie and a friend went to Star Wars-Episode III at the Fox-Bay. Today we slept in and Tuttie and Betsy came over before the afternoon Uncle Phil and Paul visit. They leave for Canada next Saturday for the summer. Maggie is already misssing them.

Paul brought me another planter of flowers for the patiolette. The patiolette is the tiny little patio Paul and I put in the back yard last fall. I love it. It has 2 redwood folding chairs and 4 big planters of flowers.

Tigger is still exhausted from the jungle kitty routines of late. He is in Maggie's room upstairs having a catnap.

Cindy

P.S (by Maggie) Hi! I just need to make it known that that furball of a cat Tigger does not know where his loyalties lie. The last two nights he has slept in my room instead of downstairs with me. His knickname Jungle Kitty has now been changed to Traitor Kitty. I'll have to show him that he needs to earn his keep by keeping me warm!!!

Thanks for all the love and support (and keep putting messages in the guestbook, even when we are inpatient- they are so awesome to read when im not feeling so great and need a little comfort) lots of love, Maggie

Friday, June 3, 2005 8:49 PM CDT

Rocket Day was a blast. I just had to say that. We went to Bong Recreational Area and the kids set off the rockets they had built. They all got three launches. It was quite spectacular. About 200 kids, lots of parents and teachers. Then an outdoor lunch. It was cloudy and cool all day. But the rain held off. And my knee held out. Maggie had to go up a big long outdoor flight of stairs, but did very well. She was on her crutches out in a field helping to retrieve rockets with her classmates. A kind unknown dad hauled her wheelchair up the stairs for us, and I prevailed on another dad, who is a friend of mine from grade school to bring it down. It was a great day. I'm so glad we went.

We left the outing a little early to get to Froedert for a dressing change. Dr. King is very pleased with how the wound is healing. So are we.

Today's Tigger update tells of a kitty who is worn out from all of the sniffing and exploring he has been doing. He has had to sleep all evening.

Cindy

Thursday, June 2, 2005 7:45 PM CDT

I can't believe that I haven't updated Maggie's page since Sunday. Monday we spent around the house, with Phil, Paul, and Bobbie visiting in the afternoon. Paul brought me 2 flats of flowers he started from seed and 3 pots. They incude the biggest hanging basket of petunias I have ever seen. They are in the back right now, but will get rotated around.

Maggie went to CHW for blood work on Monday with Chris. We went to Froedert for a dressing change on Tues, and more lab work over at CHW. Maggie's platelets were very low, and we needed to get them checked to make sure she didn't need a transfusion of them.

Wednesday I had a fabulous work crew here. We washed the walls in Maggie's room, painted the ceiling, primed and painted the walls, painted the trim and pulled out the carpeting, padding, and nail strips. Whew! Plus we drank coffee and soda, ate pastries and salad. Plus a wee bit of gossip. The room turned out beautifully. A little bit of disapointment regarding the shape of the wood floors, but I wavered only a little before deciding to have the floor professionaly re-done. A hardwood floor is much safer and healthy for Mags. Maggie went right up there after school and is thrilled with how the room looks, and is so pleased with her color choice.

Today she had school and more blood work at CHW after school to make sure she is going in the right direction before chemo next week. She is.

Tomorrow is Rocket Day for the 6th grade at WFBMS. Chris was planning on going on this activity. Unfortunately, he is ill, and we have been scrambling for the last few hours deciding what to do. I wrenched my knee on Sunday, and don't feel it would be a wise move to be on an outdoor excursion for the day.

Today's Tigger update is that in the spring he is a very sniffy cat. Right now he is sniffing the carpet in the family room.

Cindy

Sunday, May 29, 2005 8:37 PM CDT

Hanging out, enjoying the long weekend. Paul's brother Ted, his wife Claudia, and nephews Clay and Nick came to visit today. It was so great to get to know people who have always been pulling for us behind the scenes. They were on their way up to the Shack for the rest of the weekend.

Maggie and Betsy went to Jodie and Steve's wedding reception on Friday and had a great time. I relaxed on my little patio, had a glass of wine and read the newspaper.

Tuttie came over yesterday so I could run to the pharmacy for more GCSF shots and today she picked up some items at the grocery store for me. Thanks.

This is the point in Maggie's cycle where her white count bottoms out. She is tired, but has more energy than last time, due to the transfusion she had earlier this week.

Wednesday is still on for painting and carpet ripping out. Call Carol Cochran if you feel a need to help. CarolCo@wi.rr.com.

Tonight's Tigger update tells of a cat who has been very vocal (meowing) alot today. He comes right in whenever people come over and introduces himself.

Cindy

Thursday, May 26, 2005 9:53 PM CDT

Now, it is important to note, that after the Uncle Phil visit on Wednesday, and the all-important math lesson, that Maggie did very well on her math homework. Whew, important to get that off my mind.

We went to both Froedert for a dressing change, and CHW for lab work at 11 this morning. Her hemoglobin is much better, but her white count, and absolute neutrophil count, which measures the functioning and devlopment of the white cells, is very low. That is on schedule for how this combo of chemo drugs has been hitting Maggie. She continues to get the nightly GCSF shots to stimulate her bone marrow to produce white cells.

Not alot of luck so far with the router application. I may have to break down and get a 6th grader to help.

I got some plants put in today. Getting ready for the painting and carpet ripping out next week. Call or email Carol Cochran if you want to help. It is wonderful to have such great people to rely on. I told Carol what I need organized, and she is taking care of it. CarolCo@wi.rr.com.

Tomorrow one of Maggie's stepsisters is getting married. Maggie and Betsy will be going to the reception in the evening.

Today's Tigger update tells the story of a cat who escaped outside again this afternoon (I sort of let him go out for a few minutes, he doesn't really escape) and then he gets scared by a bird or a person and is cowering by the back door pleading to be let in.

Cindy

Wednesday, May 25, 2005 4:33 PM CDT

I am trying to get Maggie settled down to do her homework, but she feel so much better since the transfusion yesterday, and has so much energy, it is hard. I may have to get a lasso out. I actually just looked that word up, to make sure I spelled it right.

She was late getting to school today, but had a great day. One side effect from the chemo is that she gets large doses of decadron, a steroid, to help with the nausea, and afterwards she has trouble sleeping. She spoke with the psychologist, Suzanne, yesterday, and they worked on relaxation techniques and a bedtime routine for her.

I think she is also excitied because she hasn't seen Uncle Phil for 2 days, and he is due any minute.

I have been trying to install the router for her computer, and have been unsuccessful. I need to go to the Dell help site and get some help. Do they do laundry at the Dell help site.

Next Weds, people are coming over to help me pull the carpet out of Maggie's new room and to paint it. Call Carol Cochran if you want to be on the work team, or email her at CarolCo@wi.rr.com. I have been busy stripping wallpaper and now I have some cracks to patch and to wash the walls one last time.

Todays Tigger update involves the fact that he was keeping me company while I was taking wallpaper glue off the walls, and he can still jump up into a window. Pretty good a 19 year old cat.

Cindy

Monday, May 23, 2005 8:54 PM CDT

Maggie spent the rest of the weekend,after we got home, mostly in bed, feeling lousy. That is what chemo will do to you. She did come outside on Sunday while I was doing yardwork and washing the car. It was a marvelous day here. Between the lilacs, the lily of the valley and my neighbors crabapple tree, it smells delightful here.

Saturday and Sunday evenings we had wonderful suppers brought over by friends.

Today Maggie got to school, late, but got there at 9. She had to leave at 2:15 for a Froedert appointment and then labs over at Children's. The tract wound at the bottom of her incision is healing very well. But her hemoglobin is already very low. She will leave school tomorrow morning to go out to clinic for a transfusion.

Chris took Maggie for her appointments today, so that I could wait for the UPS man and sign for her laptop computer that arrived this evening. YEAH!!!! The router for the wireless internet will come in the next few days. You should have heard Maggie. She was doing a song and dance when it arrived.

This morning I had a friend come over and help me move some furniture and put some stuff in the attic, get the fans out. Now winter will come back. Actually it is already colder since I got them down.

This afternoon, my old boss and another friend came over to visit. Then the afternoon visit from Uncle Phil and Betsy was here this evening, going through the refigerator. I made the first rhubarb crisp of the season. Yum.

Tigger, as always, is a lump of fur. A very lovable lump of fur at that. We think he gained some weight while we were in the hospital. He now looks something like a mini cat-zilla.

Good night, Maggie and Cindy

Saturday, May 21, 2005 12:36 AM CDT

We left the hospital at the end of this cycle of chemo at 10:30 with Maggie's promise to drink 2 liters of fluid in the next 18 hours. She is taking a nap right now, but will work on it in a bit. Of course, Tigger is taking a nap with her. He is very happy she is home.

The five days in the hospital are hard on Maggie physically and emotionally. She doesn't like to miss school, and the chemo makes her feel terrible. She said she feels like she has been beat up. She is weak and tired.

But we don't have to go to Wauwatosa until Monday. I am going to cut the grass in a few minutes while Mags and Tigs are snoozing. One of my friends from work is bringing our supper over tonight. Thanks so much. Tuttie will be here this afternoon so I can go to the pharmacy, and Betsy said she is coming over also.

Cindy

Thursday, May 19, 2005 3:27 PM CDT

We were able to get a room on the HOT unit on Wednesday evening, and Maggie moved at about 6pm. We both slept well last night in more familiar surroundings. Maggie has finised the 3rd chemo of the cycle, and will have the fourth tomorrow moring and we plan on going home on Sat morning. She feels pretty awful, and has spent most of the day in bed reading and watching movies. I stay busy knitting, reading, pacing and watching tv also.

Yesterday afternoon Tuttie and Uncle Phil came to visit, and I went and ordered a laptop computer for Maggie. I think it will help her feel connected to the outside world during the transplant. I know it will help me. The money for this gift was donated by an anonymous angel from North Shore Congregational Church.

Chris came and visited during the evening.

Maggie has a picture of Tigger taped to her IV pole, so that she can keep an eye on him. I opened a new bag of cat food for him before this admission, and I bet he is gobbling it up. Fresh Iams brand weight control with hairball prevention. Doesn't it sound yummy?

Cindy

Wednesday, May 18, 2005 11:37 AM CDT

Monday night, we were called and forewarned that there were no beds available on the HOT unit. Maggie and I discussed out alternatives at length, and we decided to be admitted to another untit, rather than driving home each night after the chemo.

So yesterday, we were admitted to 4W, the intermediate care unit, following her chemo in clinic. Mags was a little freaked out by the difference in the unit at first, but she did manage to sleep a little on and off during the night.

Good news, her bone scan and chest CT from yesterday are clear. That means that there is no current sign on mestastasis. Our tenative plan right now is to have the next cycle of chemo starting on June 6th, and then have a month break afterwards before the stem cell transplant so that Maggie can go to camp. We have a meeting scheduled with Dr. Margolis, the transplant doctor, for June 6.

Uncle Phil and Chris came to visit yesterday. Tuttie will be here soon.

Cindy

Sunday, May 15, 2005 9:11 PM CDT

Maggie and I are watching the season finale of Survivor and hanging out in the family room right now.

Saturday I spent doing yard work and working on the house. Tuttie came over for awhile and she brought Maggie some blueberry cake. Maggie loves blueberries. We went to a GM Dealer in the afternoon to try and win a car with their hot button promotion.........no luck there. We went to Target and picked up subs on the way home.

Today Maggie and Betsy went to the Milwaukee Public Museum to see the Pearls exhibition. They said it was wonderful. I did some more housework. Phil came over this afternoon and helped me get my lawnmower going and helped Maggie with some homework. Chris and Deanne came over this evening.

Maggie is going to school tomorrow, I plan to continue with some more "Chemo Mom" activities.

She has a bone scan, CT scan, and labs in the morning on Tuesday before a 1:30 clinic appointment and the first of five days of chemo.

And now for tonight's Tigger update. He is upstairs on Betsy's bed right now, a new favorite spot, as evidenced by the large amount of cat hair deposited there. He will be down to sleep with Maggie soon.

Here's hoping for clear scans.

Cindy

Friday, May 13, 2005 8:39 PM CDT

We have had two whole weeks where Maggie has gotten to school every day. This week she missed part of the day on every day except Thursday, but all in all, this constitutes a great week.

We went to CHW this morning for lab work, then over to Froedert for her dressing change. Heather, the PA for Dr. King called Suzy for us and we got the good news that her counts are rebounding enough to stave off the transfusion.

I gave Maggie a couple of places to choose from to either pick up or go eat breakfast, and she chose Jo's. This is a small family restaurant run by good friends of ours. You would have thought that Maggie was a princess from the loving and royal reception we got. And the food! We are so lucky to have such great people pulling for us. All of the people there know her and cheer us on. It was simply the best place on earth for us this morning. Thanks, guys.

This evening Maggie and Betsy went to Chris' for his birthday dinner. I looked at laptop computers and got even more confused, then came home and did some laundry. That's a machine I understand.

Right now, Tigger is being Maggie's foot warmer. He really doesn't mind it when you stick a foot under him. He is just the right weight for this activity. He is the warmest cat we know.

Cindy

Thursday, May 12, 2005 10:17 PM CDT

Why did I start the last entry talking about our beautiful spring weather? Now it has been cool and rainy.

Weds we went to Frodert for the late afternoon dressing change. Then to Mayfair to pick out a birthday gift from Maggie to Chris. Uncle Phil, Chris and Deanne all stopped by.

Today, no hospital visits!! Betsy and I had gone out for a late lunch and she went with me to pick up Maggie at school. Maggie's face lights up like fireworks when she sees Betsy. Then the two of them ran a few errands. Mags settled in for her homework, and an Uncle Phil visit.

Tonight she had the spring choir concert. The sixth grade preformed first. Maggie had a stool to sit on in the curve of the risers. She can't stand for that long. She looked gorgeous up there, in a fuschia sweater and black skirt. She wore her cute green striped hat. They sang some great songs, and Maggie had a part ringing a bell. Tuttie and I had great seats. It was in the High School auditorium. I love the choir concerts, and Tuttie does also.

Tomorrow morning we go to CHW for blood work to see if Maggie's counts have rebounded. Then over to Froedert for a dressing change. If she needs a transfusion, we will go back over to CHW and have that after the dressing change.

Tomorrow night Betsy and Maggie are going over to Chris and DeAnn's for Chris' birthday dinner.

Tigs does not like the cool weather. He is in his basket in front of the heat vent waiting for the heat to cycle.

Cindy

Tuesday, May 10, 2005 8:46 PM CDT

Spring seems like it is here to stay. Maggie went to school with a short sleeve shirt, and without her hoodie on yesterday and today. We went to Froedert for a dressing change on Monday at lunchtime and then back to school. Uncle Phil came over after school and we went out in the evening during a true spring cloudburst.

Mags went to school today and then we scooted out to CHW for labs. Her white count is high enough that she can stop the GCSF shots for this cycle of chemo, but her hemoglobin and platlets are still very low. We will have them rechecked on Friday morning and then she will have a transfusion if they haven't rebounded. She is very pale and I need to watch for dizziness, bruising, etc. She doesn't want to miss any school or activities for the amount of time it will take for a transfusion. She will be admitted next Tuesday for the next cycle of chemo.

A dressing change tomorrow afternoon at 2:45 at Froedert and one on Friday morning also. She has a choir concert on Thursday evening.

The open area at the bottom of her incision is healing slowly.

I am cleaning out my spare bedroom to move Maggie in there. The bedroom she has had is very difficult to get around in. A very helpful friend took about 15-20 bags to Goodwill for me today.

Maggie's nurse practioner in clinic, Suzy, listened to me and gave me some great reassurance this morning when I was having a little panic episode. She is so much help to both of us. We are lucky to have her.

Cindy, Maggie, and Tigger, who thought he was an outdoor kitty today, but got scared after about 30 seconds. Maggie says that being jungle kitty is just too much. The other night he was out in the tall grass in the backyard after dark. It must be the tiger in him.

Sunday, May 8, 2005 8:09 PM CDT

Happy Mother's Day to all the moms out there.

Maggie spent the weekend laying low. When her counts are down, she generally feels pretty awful, and has no stamina. Yesterday Tuttie (my mom) came over so I could go for a drive, and this afternoon we went to Tuttie's house for a Mother's Day supper. Phil and Paul were there also.

Tomorrow we go to Froedert for a dressing change and to CHW on Tues for more blood work. Mags just finished brushing her teeth, has had her shot, and I think we will both turn in early tonite.

Cindy

Friday, May 6, 2005 10:59 PM CDT

This is the first week that Maggie has gone to school for all five days since she relapsed in March. We went to CHW for labs and Froedert for a dressing change this morning and she was at school by 9:30. She didn't miss any other school this week.

But the chemo is showing it's effects on her. Her white blood cell count is down to 0.5 today. Her red count and platlet counts are also down. She came home from school and took a 2 hour nap.

Today was the Medieval Feast at WFBMS. When I got to school to pick her up this afternoon, I did see all sorts of lords, ladies, gypsies, knights, jesters plus a few people with (fake) boils on their faces. It must be the plague. I did see a hunchbacked person running out of the school this morning. All of the teachers had appropriate attire also. Maggie had her wheelchair decorated when I got there.

She went to a birthday party this evening, but her mean mother nixed the sleepover part of it. She is at home right now, feeling lousy and trying to ward off a fever. Drinking lots of water. Tigger is lending emotional support, and Maggie says he is doing a good job of it.
She wanted me to add that he is the perfect kitty. I hope all of this praise doesn't give him a big head.

Early Happy Mother's Day
Cindy

Wednesday, May 4, 2005 7:20 PM CDT

Two more full days of school. WOO HOO!! Tuesday we went to Children's after school for labs and today we went to Froedert for a dressing change with Dr. King.

Today Maggie and Uncle Phil went shopping at Placesetters after school for a gift for one of Phil's co-workers who is retiring. I think a gift and china shop is a great place for Phil and a 12 year old on crutches.

We grilled out for first time this spring tonight. Mags and I split a steak. Yum. With garlic mashed potatos and green beans.

Tomorrow we have a day off from hospitals, and Friday we will go early and hit both places, for labs and a dressing change. Then Maggie has a big day at school for the Medieval Feast. The social studies classes have each person in the class assigned to the different classes of that time. There will be nobles, serfs, religous people, gypsies, people with the plague and others. The people with the plague will have to sit at a segregated table. Maggie will be going as a gypsy. I sewed a cool costume skirt for her and one of her friends. I will try and get a picture of the two of them tomorrow when she comes over to get the skirt adjusted. Maggie is very excited about this activity day.

Special thanks to Bayshore Dental for getting me in quickly and taking care of my newest dental dilemma. The people there care alot for Maggie.

Maggie just finished getting her shot and giving a telephone interview for the camp newsletter.

Cindy

Monday, May 2, 2005 8:48 PM CDT

A very good day in our world. Maggie went to school for the whole day. She was nervous this morning, as she is now wearing a hat all of the time. Her hair is very sparse. And the few wisps that are left are fuschia:)

After school we went to see the orthopaedic oncologist at Froedert for a dressing change. The area at the midpoint of the incision that opened up has a sinus tract that he is packing and changing the dressing every few days. He was very pleased with how it looks today. He also picked off a few more of the internal vicryl sutures that have worked their way to the surface. Her body just does not like them.

Then back home through the Marquette interchange. For those of you who don't live here, the Marquette is a big north/south/east/west interchange in the middle of downtown right near Marquette University. This is the year that they are doing major reconstruction and rebuilding of the ramps and bridges. Everything changes every few days. It just adds to the unpredictabilty of our lives. As I have worked night shift for the last 14 years, and have worked very near to our house, I was never one for the traffic reports on the radio. Now I am. Just another reminder of how our lives change.

Maggie had her shot this evening. Some friends brought over May baskets, and some more brought over a dinner for the freezer. Uncle Phil came and helped Maggie with her math. Plotting equations on a graph. Never a strength for me.

Tomorrow we go to Children's after school for labs. Weds we go to Froedert after school for a dressing change.

May is a chilly month so far.
Cindy

I read Maggie this entry, and she said, "You're not going to mention your dental incident?" Lets just say I will be calling the dentist tomorrow bright and eary to get in ASAP.

Sunday, May 1, 2005 9:06 PM CDT

Well, I didn't get a nap yesterday afternoon, but Maggie did. She felt pretty horrible all day. She did perk up some after her nap. I did get my laundry and a little bit of yardwork done.

Today, Betsy came over and we all went to Target. I loaded up on some neccesities, and we had fun looking at the spring clothes. The girls managed to get me to spring for some skirts, tops and sandals. I am a sucker for cute clothes for my cute daughters. Maggie had a gift card she bought a very fun purse with.

Phil and Paul came over this afternoon and turned my outside water on. DeAnn brought Xavier, Maggie's nephew to visit. He thought Tigger was very soft.

A special thanks to the mystery person who left us a great May basket with pansies and a card on the front porch. We are blessed to have such caring people around.

Maggie hopes to get to school tomorrow. We need to get in to see Dr. King at Froedert sometime tomorrow.

Happy May
Cindy

Saturday, April 30, 2005 12:39 PM CDT

Oh, it's so nice to be home. Maggie said that coming home is so much better if you know you don't have to go back to the hospital the next day. We left at 11:30 AM and we were home in a half hour.

Maggie got her chemo at 7:30 this morning. We were just finishing up, around 10:45, when DeAnn and Dina, Maggie's niece came. Dina is almost 2 and a half. She climbed right up in bed with her and talked about Maggie's owie. They watched a cartoon together and Dina rode out of the hospital on Maggie's lap in the wheelchair. Very sweet.

Right now Maggie is reading a book in her bed with Tigger snuggled up right next to her. I am going to throw a load of laundry in and do some yardwork.

Maggie needs to see Dr. King on Monday at Froedert and we have labs at CHW on Tues and Fri.

Maybe I'll take a nap this afternoon.

Cindy

Friday, April 29, 2005 12:07 AM CDT

Thursday we went out at 9am and Maggie got her chemo at 11:30. She was able to work with the art therapist during the afternoon. We left at 4:30 with the assurance that a bed would be open for us on HOT by 6 or 6:30 pm. We went over to Mayfair Mall and met Uncle Phil for supper. Maggie wasn't feeling all that great and we headed back to the hospital at 6pm, where we got admitted. They have been so busy on the HOT unit that I don't think anyone has time to breathe.

We settled in for the night and Chris and Deanne came and visited. Maggie's wonderful nurse came in and cheered her up and we were alseep by 11pm.

Tuttie came a while ago with my favorite sandwich, and I am going to run to Mayfair and see if I can get something done about my roots. EEEEEEK.

It means so much to all of us to have all of these positive messages and caring for us in the guestbook. Thanks to everyone.

Cindy

Wednesday, April 27, 2005 6:50 PM CDT

Back at CHW this morning at 9, Maggie got prehydrated and then got her chemo at 11:30. We had varying opinions about whether she would be able to be admitted, but there was not a bed to be had on the HOT unit.

So we left at 3:30, and were able to get right home. Maggie got a big dose of Vistaril right before we left both days, which makes the car ride home more tolerable. It's hard to get chemo and then get in a car. Vistaril is a antihistamine that also doubles as an antiemetic. She gets a 24 hour dose of Zofran before the chemo, along with Decadron for the nausea.

Maggie was feeling very blue this afternoon after we got home, but her spirits were lifted by mail and most importantly by a visit from Uncle Phil and Betsy. Betsy stayed and had some supper with us. She is always able to make Maggie feel better.

Chris is coming over soon.

We go back at 9 in the morning for another try and more chemo.

Cindy

Tuesday, April 26, 2005 9:15 PM CDT

We were at CHW at 9AM for labs this morning. Right before we left the house, I had gotten a call from the clinic saying that there weren't open beds on the HOT unit, and that Mags might have to delay her chemo or do it on an outpatient basis. We had gotten this call a few times during her prior treatment, 2 years ago, so we decided to try.

At ll, when she had her clinic visit, we found out that there were no beds to be had, and they wanted Mags to do her chemo on an outpatient basis. She was none too happy about this, because she doesn't like being hooked up to an IV here, saying that home is where you are supposed to feel better. So we hit a compromise, and Maggie had her chemo outpatient, but has her port accessessed but capped off for the night here. We got home about 6:30 pm and we are scheduled to be back at 9am.

Lets hope that there are beds available tomorrow.

Chris came while we were at the hospital, and Uncle Phil came over and made Mags supper.

She is in bed now, meds taken, trying to get comfortable.

Cindy

Monday, April 25, 2005 8:27 PM CDT

We are in the middle of getting ready to go to CHW in the morning for Maggie's second round of chemo. She will get five days of Topotecan and Cytoxan. Same as the first round. I hope to talk to the bone marrow transplant nurse and try to get a rough timeline for the transplant.

Maggie went to school today. She was up and ready by 7:20, off to talk to her teachers before the day began. She missed the whole last week of school.

I had a nice day, running errands. It was sunny and warm here all day. But prime allergy season.

Maggie started losing her hair over the weekend. I asked her if it was harder for her this time than last time, and she said that it was, because she still had hope that it wouldn't happen. Now we are starting to wonder what color it will be when it grows back in. It is darker and straighter now than before her previous chemo.

We have 9AM labs and a 11AM clinic appointment. We think we will go to the City Market for breakfast in between.

Cindy

Sunday, April 24, 2005 7:01 PM CDT

Maggie and I just finished our Sunday night supper. She is showered and in bed (her bed is in the dining room) reading a book and watching TV. She likes home improvement shows and is watch Extreme Makeover, Home Edition right now.

Yesterday she had some friends over for the afternoon. They ate pizza, popcorn, drew and watched a movie. Lots of fun.

Tuttie and Betsy were also over yesterday. I got up in the morning and came downstairs to find Betsy and Maggie snuggled up together in Maggie's bed. What a good thing for a mom to see.

Tigger had his obligatory Sunday morning sunbath, with me brushing his fur today. He loves all of the attention. He was in bed yesterday morning with Betsy and Maggie.

Maggie hopes to go to school in the morning. We need to be at CHW at 9AM on Tuesday, so that will be school for the week.

Uncle Phil stopped by this evening on his way home from the shack. He and Maggie love spending time together.

Cindy

Friday, April 22, 2005 8:15 PM CDT

We had a 9:45 appointment at Froedert to see Dr. King. We got in quickly, but then had to wait for an hour to get some supplies for the dressing change. So we got home about 11:30. Maggie was not feeling up to school this afternoon, so Tuttie came over and stayed with her while I ran errands. Mags had a good snooze while I was out.

Uncle Phil stoppped over on his way up to the shack for the weekend. One of my friends brought over a great dinner.

Tomorrow, one of Maggie's friends is coming over for the afternoon. It already seems like too soon to be going back to the hospital for admission on Tuesday.

Thanks for all the good wishes.
Cindy, Maggie and Tigger

Thursday, April 21, 2005 9:11 PM CDT

Maggie the all-star stem cell producer and I got to come home this afternoon. She got some platlets this morning prior to having the Mahukar removed. She did really well with having the catheter removed and then had to lie flat for 2 hours afterwards.

It is so nice to be home. A friend from work dropped off dinner this evening to keep in the freezer. But Maggie, Betsy and I felt a need to have the garlic mashed potatoes and heated them up. Yum.

Chris stopped by this afternoon while we were all having a little snooze. Betsy, Maggie and Tigger were in Maggie's bed and I was upstairs. Uncle Phil came by early this evening. Uncle Phil had stopped over yesterday afternoon and filled up our freezer with all kinds of goodies.

Tonight one of Maggie's classmates stopped by to drop off the rubber bracelets that they ordered to raise money for the HOT unit. I am so proud of these kids for their charity towards others. Maggie's classmates have always been a great support to us.

A trip to Wauwatosa tomorrow to Froedert to see Dr. King for a dressing change, and then hopefully no hospitals until Tuesday when Maggie is scheduled for admission for her next cycle of chemo.

Betsy, Maggie and I were all laughing so hard this evening we had orange juice coming out our noses. What a wonderful thing.

Cindy

Wednesday, April 20, 2005 11:11 PM CDT

Today was a long but productive day. Mags went to Interventional Radiology first thing this morning and had the Mahukar catheter placed. She tells me that the last thing she remembers going into the procedure was hugging me goodbye. While she was in the procedure I ran into some friends in the radiology waiting room. It was a great way to pass the time.

They started the stem cell collection at about 11:30. The staff from the Blood Center of Wisconsin were very patient with all of the questions we had. They explained everything to us. The collection ended about 4pm and off the bag went to the Blood Center downtown to be seperated and counted. Tuttie was here with us most of the day and then Chris and Uncle Phil came.

I went over to Mayfair and had some chinese food for dinner while Phil was here. Tonight we got great news from the nurse practioner for the bone marrow transplant team. They had been shooting for 5 million total stem cells over the course of the collection, and Maggie's collection had 12 million today. So hopefully tomorrow she will have the Mahukar pulled and we will go home. She is dizzy this evening, with low blood pressures again, and is getting some extra IV fluid as I write this.

We will have to come out and see Dr. King on Friday and then she will be admitted on Tuesday for the next cycle of chemo.

The art therapist, the child life therapist, and the psycholgist all spent time with Mags today to help the process go quickly. I feel that everyone's help keeps us fighting this horrible stuff.

Thanks everyone.
Cindy

Tuesday, April 19, 2005 11:15 PM CDT

No fever since admission, and negative cultures so far, along with increased white counts mean that Maggie can have the stem cell harvest tomorrow. She is very nervous about having the line placed, but they are doing it first thing in the morning. She is sound asleep as I write this, and lets hope she is able to sleep through the night.

The unit of blood that she got yesterday seemed to perk her up by this afternoon. Tuttie came to visit this afternoon, and I ran home to get a few things, give Tigs some quality cat time, and take a good shower. Uncle Phil, Betsy, Chris and Deanne came tonight.

Maggie had a 13 yr old Ewing's survivor named Lexie come to visit this afternoon. She had a successful stem cell transplant 8 years ago. It was so encouraging for us to meet with her and her mom. Maggie's social worker Sheila arranged for this.

Lets hope for a smooth procedure tomorrow. The apheisis machine is waiting in the hall outside of Maggie's room.

Cindy

Monday, April 18, 2005 8:11 PM CDT

Remember when I said that Maggie wasn't feeling so well over the weekend? When I went to get her up for school this morning she wasn't feeling well enough to go. Then later in the morning she had a fever of 102.0. So off to CHW we went and we were admitted to the HOT unit from clinic. She got some extra IV fluids for low blood pressure, and then had IV antibiotics and a unit of blood. She also had all kinds of lab work and blood cultures drawn.

If her blood cultures come back negative for 2 days in a row they will go ahead and plan to do the stem cell harvest on Wednesday. So we are likely to be in the hospital for the whole week.

Uncle Phil was here earlier, and now Chris and Deanne are here to visit. All of the nurses on the unit love her pink highlights.

Tuttie is going to come out in the morning, and I will run home to get a few things. I threw a bag together quickly and didn't do a good job of packing. Mags also needs her IPOD for the stem cell harvest. She now has some books to listen to loaded on there.

Lets hope for good news, no infection.
Cindy

Sunday, April 17, 2005 4:30 PM CDT

It has been a beautiful weekend here in WFB. Yesterday, Maggie and I went to Mayfair and tooled around. She had recieved a gift card to the Limited II and she bought some cute accessories. Yesterday evening we laid low and Betsy, the wonderful older sister came over and visited. She had gone to the Pearls exhibit at the Milwaukee Public Museum and got Mags a cool souvenir.

We went to Children's early this afternoon to have blood work done in anticipation of admission for the stem cell harvest tomorrow. Unfortunately, her white count isn't high enough for them to do the harvest tomorrow, so it will have to be postponed until at least Wednesday. The good news is that Maggie will be able to go to school for part of the day tomorrow. We will have to make an appointment to see Dr. King sometime during the day.

Maggie will have to continue to have the GCSF shots at the triple dose until after the harvest is completed.

With her counts so low, she has been feeling very tired this weekend. Hopefully, she will perk up as her counts improve. Some classmates came over to visit this afternoon.

I got some yardwork done this afternoon, and I did other chemo mom tasks like bed changing and laundry.

Cindy

Friday, April 15, 2005 10:08 PM CDT

Maggie and Tuttie went to Bridging the Generation Gap Day at school today. Tuttie had nothing but rave reviews for the day. The grandparents went through a shortened schedule of classes for the day. Then there was a reception for the students and grandparents. The day was over at 12:30.

Then Mags and I headed to CHW for labs, bone marrow transplant clinic, and to see Dr. King. She also met with Suzanne, the psychologist for the HOT unit. Maggie has been very anxious about the procedure on Monday, mostly about having the Mahuker catheter placed. She asks alot of very good and appropriate questions. She also listens intently to what everyone tells her and retains every little bit of information. All of the doctors and nurses take their time to really listen to her and explain everything so that she understands what is going on. The interventional radiologist who will be putting the catheter in had us come down to the radiology department and made Maggie feel much more relaxed about the procedure.

Then we stopped at Mayfair and bought some really cute hats in preparation for the hair loss that is starting. Maggie and I also browsed through the cosmetics department. That was lots of fun.

This evening she has been feeling very tired. Her GCSF injections were tripled in dosage this evening in order to get her bone marrow working extra hard to produce extra stem cells for the harvesting procedure on Monday. So she had to endure 3 "pokes" this evening and was very brave during this. She is probably more tired tonight from her body working so hard.

The support we get from every one we meet and who interacts with us helps tremendously. I am very proud of Maggie for being so involved in all that is going on. To me it is another sign that she is going to win this battle that she is fighting.

I just wish I had an internal spell checker when I get this tired!!!

This weekend is supposed to be beautiful weather here. We go back to CHW on Sunday for more lab work.

Cindy, Maggie and Mr. Cat (aka Tigger)

Thursday, April 14, 2005 8:23 PM CDT

Hello to everyone.

Good day here. Maggie went to school for the full day, which constitues a great day for us. Her leg is draining a small amount from the incision site, but far less than it was the other night.

I did some very theraputic spring cleaning and other "Chemo Mom" chores. Last night Maggie told me that I was a very good Chemo Mom and we decided that could go on my resume', under all of my other attributes.

Uncle Phil and Chris came over this afternoon, and Maggie had Uncle Phil make her dinner while I went out for a drive.

Tomorrow is "Bridging the Generation Gap Day" at WFBMS, and 6th grade students bring their grandparents for the day. Tuttie has been looking forward to this day all year. It is a shortened schedule from 7:40 until 12:30.

In the afternoon we go to CHW for labs, bone marrow clinic, and to see Dr. King.

Thanks for all of the positive messages. These mean alot to both Maggie and I.

Cindy, Maggie and Tigs

Wednesday, April 13, 2005 6:22 PM CDT

Almost right after I finished doing last night's entry, Maggie was getting settled for the night in bed. We noticed that her pajama bottoms were damp at the site of her incision. When we investigated further, took the dressing off, we saw a small drainage site at the very middle of her incision. It had saturated all of the dressing, the guaze pads at the bottom of it, and the ace wrap around it. Made a quick call to the resident on call for Ortho at Froedert, explained the situation to him. He said to re-dress the site, elevate the leg and come to clinic in the morning.

So I ran the protective elastic tube through the washer (that oxi-clean stuff really does take blood out) and dryer and redressed the leg. Maggie was very traumatized by all of this. She had to call and share this devlopment with her dad, Betsy and Uncle Phil.

This morning at clinic he packed the drainage area (it is about as deep as the head of a Q-tip) and wants to check on it on Friday. Of course this is not the best thing to have happened, but he is confident it will heal well. Just take a little more time.

Mags went to school for a couple of hours this afternoon, had visitors, and is now working on her homework. She'll have her shot in a few minutes. We are both beat. I hope it will be early to bed for both of us.

Special thanks to my family, for listening to Mags when she gets so scared.

Cindy

OH!!!!! I put a picture of Maggie with her new fuschia streaks on the picture page at the bottom. The general concensus at WFBMS was "cool".

Tuesday, April 12, 2005 8:54 PM CDT

Very busy day today. We were up at the first time at 4AM. Maggie couldn't sleep so we got up and had breakfast early. I read some of the paper and made my pot of coffee. Then we went back to bed.

Up for the day at 8. Nine o'clock labs and then a 9:30 clinic appointment. Dr. King came and changed Maggie's dressing while we were in clinic. He thinks that the drainage at the incision site is from where she is expelling some of the sutures from the first layer under the skin. We go to Bone Marrow Clinic on friday to get ready for the stem cell harvest on Monday. Dr. King will come and look at her then.

Then we came home and Maggie had her lunch time meds and got off to school. She fell in the driveway getting into the car and hit her stump right on the incision. Needless to say, the pain took her breath away for a bit. Mine too.

Then off to school for the rest of the day. I ran some errands and came home and did laundry and changed the beds (gee, what an exciting afternoon cindy).

After school, Maggie did her homework, Uncle Phil came to visit, and then this evening she and I did some serious fuschia highlighting to her hair. Quite marvelous, if I do say so myself. She talked Chris into getting a small spot of pink in the front of his hair. She even applied it. I wanted some fuschia highlights too, but she vetoed that.

I will get a great picture tomorrow of her fabulous do.

Cindy

Monday, April 11, 2005 7:51 PM CDT

Hello and Good Evening! Maggie is here updating the page tonite. I absolutley love all the great messages in the guestbook. They are always a great source of inspriation and they give me hope plus a way to keep in touch with my friends that I dont see everyday. Today I woke up at 6:00! I was so excited to go back to school that I could not get back to sleep. School is such a great enviroment for me because there are so many people who care and are ready and willing to assist me in any way that they can. Everything is always so positive and encouraging. There is no way I could do this without all of the delightful people that really care about how I feel, mentally and physically. Tomorrow we have a clinic lab appointment at 9am, and Dr.King will come in to look at the site and change the dressing. Hopefully this wont take to long as I am itching to get back to school! Today we bought some more pink hair color, so hopefully we will do that tommorrow night and they will turn out bright and beautiful. Tigger is still the best pet companion anyone could wish for. He is truly a multipurpose cat. A lap warmer, loving friend, and someone who is always there to talk to. This is so much more than I usulally write, and my mira-lax just arrived. Oh Joy. Something gross to drink. Thanks to everyone! Keep up the messages, because they are so AWESOME and so are YOU!

Love,
Maggie, Cindy, and Tigger the overweight cat.

Sunday, April 10, 2005 8:42 PM CDT

Another beautiful spring day in WFB. Maggie lazed around, spent some more time with Tuttie (while I went to the grocery store), and we went to Barnes and Noble this evening with Uncle Phil for Maggie to use a gift card that had been burning a hole in her pocket. She is reading a book about cats and kittens right now, freshly showered, meds given and ready for bed.

She hopes to go to school tomorrow. The chemo makes her very fatigued and she has had a headache all day. She says the headache is better if she is distracted.

Tonight I will try and post a link at the bottom of the page that will try and explain the autologous stem cell transplant that she will be having after the chemo.

Don't forget to sign her guestbook!!!!

Cindy, Maggie and Tigger the cat

Saturday, April 9, 2005 9:18 PM CDT

After a long Friday evening, Mags slept very well that night. Today was a beautiful day, very springlike. Maggie had a shower this morning, spent some time with Tuttie this afternoon, and early this evening she ventured outside and chatted with some neighbors and sat on our little patio in the backyard.

This evening she had her first GCSF injection following this chemo cycle. This is a medication that stimulates her bone marrow to produce the white cells that get knocked out by the chemo. These are very painful injections.

Our plans are hopefully for school on Monday, depending on how she is feeling, and clinic and labs, with a dressing change on Tuesday morning.

At the end of next week, Maggie's nightly GCSF injections will be tripled in dosage to prepare her for the stem cell harvest that is scheduled on the 18th. She will be inpatient for at least 3 days for this collection. Then the stem cells will be cryopreserved for the transplant. They hope to collect 5 million stem cells for the transplant. Wow.

Thanks to everyone who is helping us with their good wishes and prayers. I think my co-workers know I would rather be there than doing what we are. It seems forever since I have been there.

Cindy and Maggie and Tigger too

Friday, April 8, 2005 9:50 PM CDT

As I have said so many times in the past, there's no place like home. We got home about 6:10 pm this evening. Right now, I am getting Maggie's bedtime meds organized. Our local pharmacy, Fitzgerald's had everthing ready for me when I got there at 6:30. Phil had dropped off the scripts for me on his way up to the shack after school.

Maggie had her last chemo of this cycle at noon. Then post hydration and meds. Dr. King came about 4:15 to take the sutures out of her incision from the amputation. Even with some pre-medication, having the sutures removed was painful and anxiety producing for Maggie. She did very well.

Tuttie had a great dinner waiting for us. Everything is just better at home. It must either be the ambience or the cat hair.

Chris and Deanne also came over to visit.

I'll update more tomorrow.

Cindy and Maggie

Friday, April 8, 2005 2:48 AM CDT

Sorry for the late update, couldn't get to a computer earlier. Fourth day of chemo over smoothly. Magge is beginning to show signs in her skin; she is very pale with black circles around her eyes. I hope a couple of nights at home take care of that.

She spent alot of time this afternoon with the art therapist. Ann is a person that Maggie idolizes. I think she's great, plus she makes my little girl happy.... what could be better.

Uncle Phil and Betsy came this afternoon. A good friend of mine brought Maggie and I lunch from Culvers; never has a burger and conversation been better. Betsy stayed while I ran out. I had an acute case of cabin fever. Chris came this evening.

We are planning on 12:00 chemo tomorrow and Dr. King wil be by sometime to pull her surgical stiches. Then hopefully we will get sprung. We have a clinic appt Tues.

Cindy

Wednesday, April 6, 2005 8:55 PM CDT

Maggie is resting in bed, watching a season of Friends on DVD right now. She had her Chemo at 4:30, and did well. You can tell the chemo is starting to take a toll on her, as she is tired and fatigued. But she enjoyed all of her visitors this afternoon, and watched The Incredibles with Tuttie this morning, while I ran out to get a breath of fresh air.

She also worked with Physical Therapy, the Blood Center came to evaluate her, and the Psychologist who has been meeting with her stopped by. The Blood Center nurse was here to evaluate her to see if perhaps she could get by without the Mahuker catheter for her stem cell collection. They feel it will be necessary due to her size and the fact she has already had a course of chemo and tons of blood draws.

Tuttie, Uncle Phil, Chris and Deanne and some of my friends from work came to visit today. She and I also spent about a half an hour traveling around the HOT unit, getting rid of cabin fever. She had a great shower this evening, is in clean sheets, and has some wonderful cucumber melon lotion on.

Much less nausea with this combo of chemo drugs so far than last time. We will wait and see until I finalize my feeling on that.

Thanks for all your support.
Cindy

Tuesday, April 5, 2005 9:12 PM CDT

If you had asked me this morning, I would have told you that time has moved at a regular pace this hospitalization.
Tonight, I would deny I had ever thought such a thing. The nights and evenings always seem forever here.

Tuttie, Uncle Phil, Chris and Maggie's personal fave, big sister Betsy were here today. She also got some belated birthday presents which were a huge hit.

Chemo gets moved up two hours a day every day, so it started at 6:30pm. So it is all over now, and Mags is feeling rotten. I came out to type this and left her with the job of taking all of her nighttime meds, a huge cupful.
She slept really well last night, and her pain is better today, but is a little worse at present.

We had spring in Wisconsin today, it was in the 70's. Betsy, Maggie, Uncle Phil and I sat in front of the hospital for a little bit this evening. It was delightful.

My friend Makenna did well with her surgery. Keep her and her family in your thoughts and prayers.

Cindy

Monday, April 4, 2005 11:48 PM CDT

First day of chemo is over. Maggie was all nerves last night and this morning, but her big fear was about having her stiches removed from her incision. Dr. King decided to wait to do that until the end of this week. So we got down to the Hot unit from clinic at about 5:30, and chemo started about 8:30. Two chemo agents this time, Cytoxan and Topotecan. She had Cytoxan during the last chemo protocol. Maggie's nurse from clinic, Kathy, was very patient with Maggie's nerves with getting her port accessed again and all.

The transplant nurse came and gave us some literature and talked to Maggie about the stem cell collection that will happen in about 2 weeks. Most likely she will have a Mahuker catheter ( a large double bored type of dialysis catheter) placed in her neck that morning in Interventional Radiology. They will remove the stem cells from her blood using a plasmaphersis unit on the Hot Unit. She will most likely be inpatient that admission for about 3 days or so.

Everyone is pleased with Maggie's mobility and how well she can flex and extend her leg. Especially me.

I just finished tucking her in her bed, and came out to update her page. Thanks for thinking of us.

Tomorrow is my friend Makenna's surgery. She is the 20 month old daughter of a good friend from work. Please keep her and her family in your thoughts and prayers.

Good night
Cindy

Sunday, April 3, 2005 7:47 PM CDT

Alot of nerves here tonight. Maggie is feeling some because of the chemo that is to begin tomorrow. I am feeling some because I wish I could make all of this stop.

Our plans are for an echo, to check cardiac fuction, at 1pm, and then a clinic appointment at 1:30. She will have her port accessed in clinic and they will draw her labs up there. We are to have Dr. King paged from clinic and he will come up and see her there. He said he has meetings all Monday and would be happy to leave them to come see Maggie.

Maggie has such a case of nerves that she wants to skip school in the morning before we leave for the hospital. This is most unusual.

During this hospitalization we will meet with the transplant team to start planning for the stem cell transplant.

Keep us in your thoughts and prayers.
My good friend, Lisa S.'s daughter is having heart surgery on Tuesday at CHW. Send some her and Makenna's way too.

Cindy

Friday, April 1, 2005 7:28 PM CST

It's April Fool's Day my friend Joan Y's birthday - I think she is 30 this year.

We had a fun birthday party. Betsy had to work yesterday evening, but everyone else came for a nice dinner. Maggie also recieved some wonderful surprises from some dear friends.

This morning, Uncle Phil went with us for an appointment with the orthopaedic oncologist at Froedert. Her surgical site is nice and pink. She is not showing any signs of infection. He is somewhat concerned about a small amount of drainage from the site. He put off removing the sutures from the site until Monday when he will check it at Oncology Clinic at Children's before she starts chemo.

This afternoon we went to my hairdressers to have some pink highlights added to Maggie's hair. They are not quite as bright as Maggie envisioned, but just as her mom likes. I guess I never thought my 12 year old would have pink highlights. Special circumstances call for special measures.

I added a picture from the hairdressers to the picture page. I had to leave the Maui Maggie picture at the top of the page because it is so special to me.

Cindy

Wednesday, March 30th 9:19PM

I apologize for being tardy with updates, but I have had server or computer problems, or whatever.

This week, we have sort of laid low. Uncle Phil came over a couple of times at the beginning of the week so that I could get some errands done, including my taxes to the accountant. I also went down to Columbia to sign some paperwork for my FMLA, and collected on some hugs from my co-workers.

Today involved a trip to the orthodontist for Maggie's retainers and a trip to the fabric store this afternoon for Maggie and one of her friends. They need gypsy costumes for the end of the year medival feast.

Friday has a trip to Froedert for a dressing change with the orthopaedic oncologist, and the final go-ahead for chemo on Monday.

Tomorrow is Maggie's 12th birthday. We have a small family celebration planned.

Thanks again for all the support.
Cindy

Saturday, March 26, 2005 6:49 PM CST

Busy little bees, that's us. On Thursday, Maggie got her braces off, and is thrilled to have a smooth smile. We stopped in at the Dental office too, they always root for Maggie. They were all pleased to see her.

Thursday afternoon, Maggie and I went to the craft store to get a last few thing for the scrapbook she is doing about her ski trip to Park City with One Step Camp. She has been working at it alot the last few days, and she is doing a wonderful job.

Friday was a trip to Froedert to see the orthopaedic oncologist and have her dressing changed. The site is looking good. Still planning on admission on the 4th in the afternoon for chemo. Mags wants to go to school in the morning.

Friday afternoon, Maggie, Betsy, and I went to get manicures. This pampering stuff is great. Maggie wore a sweatshirt "hoodie" that she got from an online shop that states "I'm busy kicking cancer's butt". The people at Froedert thought it was excellent.

Maggie uses crutches exclusively inthe house. She and Tuttie are planning to color Easter eggs tonite, so the wheelchair is inside to make that activity easier.

I am having supper with some very old and dear friends. It will be nice to see them, but Maggie and the path she has to travel are never far from my mind.

The transplant team nurse has been contacting me with more things regarding the stem cell transplant. I will post some more when it all gels in my mind a little better.

We are so lucky to have friends, family, and a community that is so supportive of us. I know I couldn't make it without the help. Thank you one and all.

Cindy

Wednesday, March 23, 2005 8:29 PM CST

We got up at 6:30 this morning and Maggie got to school on time. She takes the wheelchair to school. I was concerned about some logistical issues, but Maggie, with the help of her friends, was able to take care of everything. I got to meet a friend for a cup of coffee.

This afternoon, Maggie is just plain beat. She is having more pain in her leg and knee, probably from being up in the wheelchair so long. I'm glad there is no school tomorrow. She gets her braces off at 10AM.

Amy, the Nurse Practioner from the HOT unit, called today to set up plans for Maggie's chemo. Right now they plan to admit her on the 4th of April for the 5 days of chemo. She will stay in the hospital for the chemo the first run. She will have 4 cycles of chemo with Cytoxan and Topotecan. The cycle will be 5 days of chemo with then 16 days off.

14 days after the first day of chemo they plan to begin the autologous stem cell harvest. They will preserve her stem cells to give back to her after the chemo is done, along with all the other parts of the stem cell rescue.

School was great for Maggie. I'm so glad she got back there before she starts chemo.

Uncle Phil, no ponies in WFB!!!!!!

Cindy

Tuesday, March 22, 2005 7:35 PM CST

This morning, Maggie said "I'm going to school this afternoon." And sure enough, she did. Not without some trepidation on the part of her mom, but she is gutsy. As we were riding the elevator up to the 6th grade house, I could hear all kinds of voices saying, "Maggie's here!".
I came home and worked on her room. I need to get it really clean before she starts chemo.

She came home and did her homework, and it felt so good to be nagging her about something normal.

Betsy and Uncle Phil were both here this afternoon. Tuttie came and stayed with Maggie this morning. Maggie, Tuttie and I were supposed to go to NYC this Thursday for a vacation, and I had bought Lion King tickets. I was lucky enough to be able to sell them on EBay. So I went and shipped them this morning.

Maggie is planning on going to school for the whole day tomorrow. Thursday is an activity day for the 6th grade. She will be having a much anticipated activity of her own, getting her braces off!!!

Cindy

Monday, March 21, 2005 10:10 PM CST

Maggie continues to amaze me with all of the progress she has made. Today she was the stupendous crutch user. It has been harder for her to use her crutches than the walker, due to having her port placed on her right side, and the pain she has had at the operative site.

Well today, she used her crutches almost all day. We drove out to Froedert Hospital, where the orthopaedic oncologist, Dr. King is based for him to check her leg and change the dressing. She did very well. She still uses the wheelchair for any long distance. She did the stairs in the house for the first time today.

She is still very anxious to go to school soon.

Dr. King gave the tentative okay for her to start chemo two weeks from today. That is the day that spring break ends for her school. I plan to talk to her guidance counselor tomorrow to get working on the school work.

She is nodding off in a chair right now. Thanks so much for all of the good wishes and prayers. We need all the help that we can muster to "kick cancer's butt".

Cindy

Sunday, March 20, 2005 8:41 PM CST

It is certainly nice to be home. Maggie and I are sleeping better. We have walkie-talkies so that I can sleep upstairs in my bed and she is down in hers. Friday night was tough, but last night was much better. Maggie had some visitors both days. Her favorite visitor is her sister Betsy. She was just here.

Maggie was up and about all morning, on the computer and visiting with friends. She was worn out this afternoon, and both of us had a needed nap. I woke up to the Fabulous Uncle Phil washing windows in my house.

Chris and Deannne came by this evening. Tigger is an equal opportunity shedding cat, and he goes from lap to lap.

We have an orthopaedic clinic appointment tomorrow at one.

Probably will start chemo in 2 weeks.

Keep those prayers and good thoughts coming.
Cindy

Julie Schleck may say she is 39, but I know differently.

Friday, March 18, 2005 8:54 PM CST

Right now, Maggie is having a little snooze on the couch, following a long day here. She has successfully navigated the first level of the house, and got her wheelchair around the kitchen and living room this evening.

Her pain improves every day, but she continues to have alot of it. She gets very tired from the amount of work that it is just to take care of ones every day life. I am continuing to be so proud of her for facing this challenge.

Our community continues to be very helpful. I called a neighbor this morning to ask him to take care of my walks, as we had 4 inches of snow. He was out there in a few minutes. Some friends went grocery shopping for me, and another brought over dinner. I appreciate all of this, so that I can be as much help to Maggie as possible.

Maggie got to the computer in the family room this morning and was amazed at all of the messages in her guestbook. Thanks to everyone.

Cindy

Thursday, March 17, 2005 8:47 PM CST

Hello from Whitefish Bay. Yes we're home. We got home about 6:30 pm tonite. The hardest part for Maggie was getting from the car into the house. She did really well. Betsy and Chris were here to help. Chris had moved a bed into the dining room for Maggie this afternoon for Mags to use until she feels more steady doing the stairs to her bedroom.

Then I ran over to our local wonderful pharmacy, Fitzgerald's, and picked up Maggie's prescriptions. She had some supper and is watching the Apprentice right now. She had a representative from her STAR group bring over Mr. Piggy to keep her company.

Many thanks to Tuttie for support and to the Fabulous Uncle Phil for bringing our stuff home for us and running the scripts up to Fitzies. We have the best family in the world.

Here's to a restful night.
Cindy

We have a clinic appt on Monday afternoon.
Tenative plan to start chemo in 2 and a half weeks.

Wednesday, March 16, 2005 10:49 PM CST

This morning was very tough on Maggie, with lots of pain and muscle spasms during her Physcial Therapy session. The pain service docs, along with the oncologists, changed the meds around and she had a great afternoon session, learning to do the stairs with one crutch. Lots of work to do to get ready to go home.

She was worn out this afternoon, and practically slept through the visitors she had. She really appreciates all of the wishes from her classmates, and has her new IPod charging for lots of listening pleasure tomorrow.

We are still aiming for going home friday. I am going to dash home tomorrow for a bit to get some things ready. My hot water heater was shooting water out it's side when I went home for a bit on Sat, and Chris replaced it yesterday.

The staff from the Neroli spa came and donated massages and manicures to the HOT (Hematology/Oncology/Transplant) families and patients this evening. I have Nordic Nites nailpolish on, like the Viking woman I am, and feel like a new woman.

Cindy

Tuesday, March 15, 2005 10:48 PM CST

The strength and resilence that Maggie continues to demonstrate keep me going. She worked with her physical therapist this morning on exercises to strengthen her quadraceps muscle in her leg and to keep the knee straight so that she has optimum use of the prosthetic. She practiced them a number of times during the day. She walked with the walker to the window and back.

It helps that the pain team and the oncologists are contiually looking at ways to help manage the pain that she has at the surgical site. Tomorrow morning we have a date with PT to work on stair climbing.

Maggie had two very important groups of visitors, apart from the usual family visitors like Uncle Phil, Betsy and Chris. A group of her friends from her school brought her an extremely generous and very appreciated gift of an IPod. They had it all loaded up with messages, music and video images. She has spent all afternoon and evening enthralled with it. It will be a huge help during her chemo and stem cell transplant.

Two of Maggie's counselors from her summer camp, called One Step at a Time, came up to visit from Chicago and brought some more diversional activites and lots of postive memories of camp and plans for hijinks this summer.

I am going to change one of the links at the bottom of the page to one for her camp. This camp has been such a positive place for Mags. Her picture from 2 summers ago is on one of the pages. They sponsor the ski trip she went on a few weeks ago.

We are so fortunate to have such a great place as Children's Hospital of Wisconsin and the support from Maggie's school, friends, and our friends and family. Thanks again.

Cindy

Monday, March 14, 2005 8:58 PM CST

Today was a long day for Maggie. She has been up and out of bed numerous times, and worked hard during physical therapy. The most challenging part of the day was when she had her surgical dressing changed and the drain at the site pulled. The site looks good, and the dressing will not have to be changed for another week.

Lots of visitors, from which Mags is exhausted tonite. I am still planning on some serious shower time for her. I think Maggie would agree that it is more difficult when your mom is a nurse.

She did make it out to the computer room and checked all of the messages in the guestbook. We all appreciate the support and encouragment. You probably can tell this program does not have a spell check for a very tired mother to use.

We still hope to go home at the end of the week sometime.

Thanks for all of the prayers and positive thoughts. They keep us both going.

Cindy

Sunday, March 13, 2005 8:09 PM CST

Maggie has had a big day today. Out of bed three times so far. She had the epidural catheter for pain control removed this morning, and she is having lots of pain when she gets up, and even at rest. With the help of the physical therapist, she used the walker to get out to the halway and back. She is eating and drinking.

One of Maggie's stepsisters and her husband and child came to visit this afternoon, along with Chris and Deanne. Uncle Phil and Tuttie were also here. Betsy is at work.

Maggie also had two friends from school and their moms come to visit. She did very well with this.

Maggie's goal for tomorrow is to get out to the computer room to read her guestbook. She has had to rely on me delivering the messages secondhand, and that just doesn't do the trick.

It means alot to all of us to get all of these messages of encouragement and good wishes. Thanks everyone.

Cindy

Saturday, March 12, 2005 7:11 PM CST

Maggie has made lots of improvements today. She sat on the edge of the bed twice, despite lots of pain and anxiety. She is simply the strongest person I know. She still has the epidural catheter in for pain control. The pain service doctors came by this morning and said that they will take it out in the morning. She is eating some, and much less nausea this time. She had another fever last night, but it came right down with some tylenol.

She had her first visitors outside of family this afternoon. Some of my co-workers stopped by while I was at home doing laundry and shoveling. And a school friend and her family came this evening. It is hard for her to see people, and I think she handles it all gracefully.

Chris was here for most of the day so I could run home and Betsy is here right now. She helped me sit Mags on the side of the bed. She is very impressed with how strong Maggie is.

We hope to go home sometime the end of this week. Tigger misses Maggie.

Must go, Archbishop Dolan just came to see my special girl.

Cindy

Friday, March 11, 2005 3:05 PM CST

Maggie told me about an hour ago that she would like to have visitors. I knew that all I needed to do would be to post it on her site, and that people will come. Remember that she is still very tired from all that has gone on, and in is a good amount of pain. But her pain is much better this afternoon than this morning.

She had a long night, with a fever and decreased oxygen saturations, probably from the pain medication. She has a catheter in her back (epidural space) to a pump she can push for pain medication. The anesthesia service runs a pain service here, and they have checked on Maggie twice already today, and ordered things to help her out.

Her leg is in a cast from above the knee to below the incision to keep the knee straight in order to keep her quadraceps muscles in good order. That will stay on for a few days.

Keep the prayers, good thoughts, and messages coming. They help us all more than you know.

Cindy

Thursday, March 10, 2005 8:39 PM CST

Maggie just returned to her room on the HOT unit from surgery. She had an amputaion of her right lower leg about 3 or 4 inches below the knee and her mediport replaced. Her port is an indwelling IV catheter for giving chemo meds and blood draws.

We will probably be in the hospital for another week or so. The physical therapist started woking with Maggie before surgery on crutch walking and this will continue next week. She will be fitted for her first prosthesis in about 5 or 6 weeks.

Maggie will have more chemotherapy after her incision heals and the current plan is for a stem cell rescue after that. I will post more info about that later.

Tonight I just wanted to let everyone know that she has made it through surgery safely. We had lots of friends and family here today. Maggie did a slew of art projects this morining for distraction before she went to the operating room. She contiues to be the bravest person I have ever had the honor of knowing.

Thanks to everyone for all of the support. It means so much to all of us.

Cindy

Wednesday, March 9, 2005 9:51 AM CST

Dr. King, the orthopaedic oncologist, was in this morning and told us that we have a 2:30 time for surgery tomorrow. He talked to Mags a little more about the recovery process from the surgery. They will also place a Medi-port during the surgery. He plans to do the surgery about 3 inches below her knee.

Maggie felt sick to her stomach all day yesterday, but kept some snacks down late last night and this morning. She will have nothing by mouth after midnight tonite in preparation for the surgery tomorrow.

All of the positive messages from everyone mean a tremendous amount to both of us. Thanks everyone.

Cindy

Tuesday, March 8, 2005 1:03 PM CST

We are on the HOT unit at Children's. Maggie had a biopsy of the new tumor and bone marrow biopsies yesterday. She spent a long night feeling pukey. Dr. King met with us right after surgery and said that the tumor is Ewing's and has strongly recommended a below-knee amputation. Mags is aware of this, and wants to get it over with. We hope to proceed with that by the end of this week. We are going to stay in the hospital until the surgery.

The bone tumor board at Children's meets tomorrow and will have some reccomendations for the further treatment that will be needed.

Dr. King says that Maggie will have more mobility with a prosthesis, and a much higher chance of cure, than if the bone was resected. I'm not sure if I am making much sense with all of this.

Keep the prayers and good thoughts coming
Cindy

Saturday, March 5, 2005 7:36 PM CST

Yesterday afternoon we met with the orthopaedic oncologist and the oncologist. We looked at the MRI scan where the new tumor is very visable.

Maggie will have a biopsy of the tumor on Monday afternnon, along with bone marrow biopsies. She will be admitted through day surgery and stay overnight. Mags and I both hope we get to stay on the HOT unit, where we feel at home.

After the results of the biopsies come back, we will meet again to determine what will be done. The doctors feel sure that there will be more surgery, along with more chemotherapy. A stem cell rescue is being considered.

Maggie and I went and visited Phil and Paul at the Shack today for some diversion and relaxation. We tested out the new hot tub. There is a good foot of snow on the ground up there. It was delightful, and Phil cooked us a wonderful lunch.

Please continue to keep Maggie in your thoughts and prayers.
Thanks
Cindy

Friday, March 4, 2005 10:40 AM CST

Hello,

Cindy here.

For all the people who check in on Maggie, I need to let you know that we were told yesterday (3/3/05) that she has a new tumor. This was found on her routine follow up scans on Tuesday. We will meet with the oncologist, Dr Warwick, and the orthopaedic oncologist, Dr. King this afternoon to talk about what will happen next. Suzy, Maggie's nurse practioner, has told me that there will be chemo and surgery. I will let you all know as we know more.

Please keep Maggie in your thoughts and prayers. She wanted to go to school this morning, trying to keep things normal. We go to Children's at 2 this afternoon.

Cindy

Friday, January 28, 2005 8:43 PM CST

Miss Maggie Loo Who again! All is well here in snowy Wisconsin, with about 2 to 3 feet of that wonderful white stuff. Happy Birthday Uncle Phil!! Hip Hip Horrray for the best Uncle ever! Woo Hoo!
Nothing New Here,
~Maggie

Friday, January 21, 2005 8:14 PM CST

...And once again... it's Maggie with the weather report!
It's snowing here in WI, and 7-12 inches are on the way!

No sign of the right ankle sprain remain,
and I am really getting excited about the Utah Ski Trip!! Only 3 weeks until! ( can you tell than I'm counting)
Well, thats all I've got to say!
Love Maggie

P.S (tigger is snoring now)

Saturday, January 15, 2005 9:12 PM CST

Hi!! Maggie doing the page again.. and you better check often 'cause I'm changing it every few days!!! The right ankle sprain is feeling alot better... I was able to go inner tubbing out at Sunburst Fri. It was about 18 below (with wind chill) but we were all bundled up to keep nice and warm! ( no frostbite here!) I'm still wishing for a big snowstorm... I sure hope it comes soon! I really don't think it's right to be -18 with no snow. It's just wrong. I am really gettting excited to go to Park City, Utah in February on a One Step At A Time trip. (summer camp) We will be there the 12th to the 19th... good thing we have a few days off school then so I won't miss much!! Tigger (cat) is doing well, as he is sitting by my side like the wonderful cat he is. We got him a new basket for Christmas that is deluxe! He is so old (19) that we got a bed with "Orthopiedic Polyfoam Lining". He spends 75% of his time inside it. He really is the cutest cat ever. Did you know that at the Pet Supplies Plus on the Port Road now has kitties from the Humane Society in the back??? There is one that is 1 year old that has been there since Dec. 18th that really wants to go home with someone!!!!!!! If anyone is looking for a loving gray and orange female (spayed) tabby cat that is slightly pudgy ( lack of exersize) please go look at her! please! I really want someone I know to adopt her!
Take care everyone,
Maggie (and Cindy) (and Tigs) (and Betsy)

Wednesday, January 12, 2005 3:37 PM CST

Hey ya'll! It's Maggie again with an update.
Yesterday was a clinic appt., and all went well!
The bad news is that I sprained my ankle ( being a klutz again)but it wil heal in a week or so. It's really not horrible. I say that because mom is a worry wart whenever something happens in the ankle region.

Now we go to Maggie's Weather Report!
- Snow is on the ground here in WFB
- Last night there was rain, but I hope there is more snow!
- And Fri. our class is going sledding for a half day!
-Brrr!
-EEK! i just heard thunder!

--stay safe!--
Love, Maggie

Saturday, December 25, 2004 3:36 PM CST

Merry Christmas everyone!

Here's another opportunity that I have to thank everyone for their hope, prayers and support. Thank You SO MUCH!
I hope that everyone has a happy and safe holiday.
************ Wish for snow!****************
Love, Maggie

Friday, December 3, 2004 5:44 PM CST

Hi!!!!!!! Its Maggie! I absolutley love looking at all the messages on the guestbook... its so awesome. Michelle wanted to hear more about camp soooo......
CAMP!!!

-Camp One Step at a Time is a camp especially for kids who have cancer or who have had cancer. This summer was my second year, and i cant wait to go back! The camp has something for everyone and makes sure that no matter what disabilities there might be. Camp is just so much fun... its so awesome. Michelle is one of my friends from camp! PEACOCKS ROCK! (he he he- michelle)
All for now...
HAPPY HOLIDAYS!
maggie

Wednesday, November 17, 2004 10:25 PM CST

On Monday, November 15th, Maggie had her one year off treatment scans, X rays and lab work done. We had her clinic appointment on Tuesday, and are thrilled to report that she remains in remission. Big milestone, reaching a year off treatment.

We get to cut back our appointments to every two months, and scans are every four months now. So our next clinic appointment isn't until January 11th, 2005!!!!!

Maggie does so well with the scan days, she likes to see all of the people at Children's who have made all our sojurns through there the best they can. I continue to be so thankful for every person and all that they do.

May you all have a peaceful and Happy Thanksgiving. I know that we are blessed.

Cindy and Maggie

Saturday, September 11, 2004 9:21 PM CDT

A few weeks ago, Maggie had her 9 month off treatment scans, which continue to be good. Her bone marrow has a "normal signal" on the MRI.

She started school on September 1st at Whitefish Bay Middle School, which is for 6th through 8th grades. Her most astute observation is that it is all a blur. She is trying to do her best to fit in, and she ran the track during PE, but had pain in her ankle for a few days afterwards. Walking is more her style at this point in time. She has been walking home or biking home from school every day.

Phil and Paul came home from Canada the weekend before school started. Maggie and I are thrilled to have everyone home for awhile. Betsy moved in with two friends on August 1st, right after she turned 21. We all went out for dinner last week to celebtrate my birthday and Paul's which is in the summer.

Tomorrow, we hope to attend the Celebrate Life picnic sponsored by Children's Hospital in honor of Childhood Cancer Awareness Month. Maggie has a great time at these activities, and it makes me so thankful for her health.

I am trying to scan in some new pictures tonight. Wish me luck.

Happy Fall
Maggie and Cindy

Tuesday, July 13, 2004 9:55 PM CDT

Happy Summer to All...

Sorry it has taken me so long to get the page updated. I have no good excuse, just busy.

Maggie's last scans, in June continue to be stable. She still has intermittant pain in her leg where the tumor was, and she continues to have monthly appointments at the Oncology Clinic.

She went to Lake Powell, Utah in June with Chris and Deanne. She had a wonderful time with all of her cousins, Chris' parents, and his brother and sisters. Betsy couldn't get another vacation this spring, and stayed here with me.

Then she was back home for a few weeks. Maggie was enrolled in the Summer Band through the Community School and was in the 4th of July parade. She also volunteered at the picnic, painting faces.

Saturday, July 10th, Tuttie and I took Maggie to camp at Camp One Step At A Time at the Y camp on Lake Geneva. She is going for the full 2 week session this year. Last year she only went for one week, and told me the day I picked her up that she planned to go for 2 weeks this summer. Tuttie and I stayed overnight in Delavan, and went to a picnic lunch the next day at camp. She was having a wonderful time already. She is in a beautiful new cabin this year, with air conditioning!!! Which is great because this wonderful camp has kids in all stages of treatment.
We have had a very cool and wet summer until last weekend, when the temps shot up.

I know I should change the picture at the top, but I love the turtle, and just can't bring myself to do it.

Happy Belated Birthday to Kate Wealton.

Thanks for the continued support.

Cindy, Maggie and Betsy

Saturday, May 29, 2004 4:15 PM CDT

Happy Memorial Day Weekend.

Maggie gave us a little bit of a scare this week. She had her scheduled monthly appointment at Children's on Weds. am.
She has bben having pain where the tumor was at night for the last few weeks, so I made sure she shared that with the nurse practioner, as that is how all of this started. She is scheduled for her next set of scans on June 14th, but they whisked us off to MRI right then and there, and she also had some extra plain Xrays of her ankle and fibula. Then 2 days of waiting for results. Friday morning, her nurse practioner, Deb, call to say that the scans are stable. What a relief. Meanwhile, I had managed to get the old worry machine back up into full swing. I am very good at it. I need to extend a big thank you to all of my friends, family, and co-workers who help me out when the worry machine is in overdrive.

Today, Maggie is with Chris for the afternoon, as Betsy, Tuttie and I went to the memorial service for Tuttie's father's cousin Edith. Maggie chose to go to a wedding instead of the memorial service. Edith was 102 and lived at Alexian Village.

Yesterday we had spring like weather, but today is cold and rainy. We have had a very wet spring. Paul leaves for Canada this week and Phil goes in 2 weeks. It's been a quick year.

So we have the rest of the tests on June 14th. Maggie's last day of school is on June 11th. She will go to the middle school next year, so it is goodbye to wonderful Richards School. Her plans for the summer include summer band, a week in Utah with her dad, 2 weeks at camp in Lake Geneva. Plus the new Harry Potter movie comes out next week.

Plus a big 50 for Mary Lou Ketterhagen next week!!!!!!

Smiling at everyone,
Cindy, Maggie, Betsy, Tuttie and Tigger.

Monday, April 26, 2004 3:33 PM CDT

Monthly checkup at Children's this morning. Maggie took her photo album from Hawaii with her and proudly showed her pictures to everyone. Jen, the wonder nurse, from the HOT unit is now working in clinic, so Mags was thrilled to see her.

Our Make-A-Wish trip to Hawaii was such a special and wonderful trip. What a great organization. Maggie's big wish was to see sea turtles. The second day there, while we were buying a sea turtle window ornament at the Dole Pineapple plantation, the nice saleswoman told us how to find a beach near the North Shore of Oahu where the sea turtles have been coming ashore to bask in the sun. So off we went in the car, pulled off the road at this unmarked beach, and sure enough, there were three sea turtles up in the shallow water. Betsy, Maggie, and I went tearing down there, and the girls got to see these magnificent creatures up close. Tuttie came down to the beach and saw it all too. This moment will live in my heart forever.

We had a very busy, but great trip. When we were on Maui Maggie, Betsy and I went on a cruise with Maui Classic Charters, and Maggie was brave enough to go snorkeling with me. We saw sea turtles out in the ocean, and whales off in the distance.

Scans in two months. Maggie's hair is about 3 inches long. I need to borrow a scanner from someone so I can scan in some pictures from the trip. I won't tell you about the accident I had with my camera when the waves knocked me down.....no small feat.

Happy Spring
Maggie, Cindy, Betsy, Tigger and Tuttie.

Tuesday, March 30, 2004 8:18 PM CST

HOORAY FOR GOOD SCANS.

Tigger has found a new spot to watch the birds and stay warm. He likes to sit on top of the hard drive. Maggie snapped this picture the other day.

Scans and lab work done on Monday show that Maggie remains in remission. Wonderful new for the day before Maggie's 11th birthday.

Tomorrow we are going to Phil's condo on the East Side and then to Zaffiro's for pizza for Maggie's birthday. She is having a small party on Sunday for her friends.

Then we pack for our trip. We are going to Oahu and Maui. Maggie's biggest hope is to see sea turtles in the ocean. Her wish granters from Make-A-Wish brought her an underwater and a regular camera to capture her trip on.

Thanks to everyone for their support.

Maggie and Cindy

Friday, March 26, 2004 7:19 PM CST

Hi everyone. We leave for Hawaii two weeks from today. To say that the excitement is building is an understatement. Tomorrow the planners from Make-A-Wish come to fill us in on the details.

Maggie had a fever last Sunday afternoon of 102.8, which prompted a visit to the ER at Children's for a check and blood work, but not an admission, because she looked so good, and doesn't have her port in anymore. She got to go to the dentist for the first time in two years today. It was another step in the right direction. She had an appointment scheduled for the day after she was diagnosed in October of 2002, but the oncology doctors prefer that she waited until her chemo was over and her port was out to have any dental work done.

Monday Maggie has scans and an appointment. We will have to have her bone scan later in the week due to a scheduling problem.

Wednesday is Maggie's 11th birthday. YEAH.

We want to wish a Happy Birthday to our friend Colin on the 30th.

Think good thoughts.
Cindy and Maggie

Monday, March 1, 2004 3:12 PM CST

Things seem to keep moving in the right direction. Maggie had her port removed on Friday, and it all went smoothly. She did manage to come down with a cold on Friday night and spent most of the weekend feeling pretty icky. Her port site was sore and she had a low grade temp.

We went for a clinic visit, Chest X-ray and labs this morning. Scans in 3 weeks.

Maggie and Betsy had a fun time in Utah the 19th through the 23rd of Febuary. They loved seeing all of their extended family out there.

April 9th, Tuttie, Betsy, Maggie and I go to Hawaii for a week, courtesy of the Make-A-Wish foundation. Maggie is very excited about being such a world traveler. Tuttie and I were there in April of 1974 for a high school graduation trip for me. I am thrilled that we all will be able to share this trip together.

Our snow is almost gone, but it is only March. I expect one more storm before the winter is really over.

Don't forget to sign our guestbook.
Maggie and Cindy

Tuesday, February 3, 2004 8:42 PM CST

Hi Everyone. Happy Birthday to Tuttie today.

Maggie had her monthly appointment in clinic yesterday. We had enough time beforehand to hit the Krispy Kreme shop and take treats for Valentine's Day to the staff on the HOT unit and to Clinic. Maggie loves to take treats.

Chest Xray and Clinic. She got her labs drawn when they flushed her port, so we were back to Richards School by 10:30 am. Suzy, her nurse practioner, called yesterday to say her labs were good and chest X ray is clear. We have scheduled her port removal for the 27th of Febuary.

Lots of great 5th grade stuff going on. Maggie will compete with 24 other 5th graders on Thursday in the Richards School spelling bee. She had a sleepover Friday night here with two of her best buddies.

Tuttie had successful cataract surgery last week. It looks like 2004 is our year.

Betsy and Maggie are flying to Utah in 2 weeks for a long weekend when Chris is getting re-married. They are looking forward to seeing their family there.

January 23rd was Phil's birthday, and Maggie made him a trinket box at a ceramic shop with her Girl Scout troop.

We've had a real Wisconsin winter. Lots of snow, freezing temps. Maggie loves to play in the snow. Betsy is snowboarding with a friend this evening.

Warm wishes to all,
Maggie, Betsy and Cindy

Monday, January 12, 2004 3:51 PM CST

Happy January!!!!!!

Maggie's scans from last Monday, 3 months off treatment, were good. I could get used to all of this good news buisness. I'll call her nurse practioner this week to talk about getting her medi-port removed. Last week was the quickest and smoothest of all of the outpatient scans yet. I even dozed off in the room with her while she was having her MRI! That machine is so loud she has special headphones on and I wear earplugs. But it was dark and warm. We were still at the hospital for over 7 hours.

Maggie's hair is growing back in. She has her eyelashes, body hair, and eyebrows all back in, and her hair is about a half an inch long. She has worn a bandana to school every day since September. Last week she started taking it off for short periods.

We had some beautiful lake effect snow on Friday and Saturday. Light and fluffy. Maggie did some snow sculpting in the back yard this weekend. Right now she and Colleen are in the kitchen doing homework and having a snack. I am going to try and get the Christmas decorations down in the next 2 days. I worked last night and am off until Thursday night.

Stay warm,
Maggie and Cindy (Betsy and Tigger too)

Monday, January 5, 2004 6:37 PM CST

Hi, It's Maggie with the update today! Scans went well, but we won't get the results until a few days from now. We were in and out of Children's Hospital in....Oh, about 8 hours. (Thats quicker than usual!) We stopped by the HOT unit for a minute to visit my nurses on our way out of the hospital. The snow really came down yesterday, and we got about 5 or 6 inches! :) I played outside last night until around 7:30 or so and today played outside for 2 hours! Tomorrow I will go to school and play in the snow some more. - Hope everyone had a good holiday and we send wishes for a happy new year!

Thank you for the support, Maggie, Cindy and Betsy.

P:S Feel free to sign the guestbook again!

PP:S The picture is of Betsy, Me, and Paul

Monday, December 29, 2003 3:34 PM CST

I hope everyone had a Merry Christmas!! While the New Year will be ringing in, Maggie will be at her Dads, and I will be working. Seems so normal, doesn't it.

On the 5th of January, she will have her bone scan, MRI, CT and X=rays along with a clinic visit. Busy day. We tried to get in over her break, and especialy before the New Year for insurance reasons for the tests, but they were booked solid.

Right now Maggie is playing her new Cat-in-the-Hatopoly game with Tuttie, and I am checking my email. We went up to the shack for the 20th to celebrate early with Phil and Paul. They are due back from Florida on the 31st. I worked on Christmas Eve and the girls went to Chris's for dinner and on Christmas we had dinner here after Betsy got home from work.

Think good thoughts on the 5th. Love and Peace to everyone.
Maggie and Cindy

Tuesday, December 9, 2003 4:49 PM CST

Yesterday Maggie had a clinic visit. We were in and out very quickly. She showed her incoming fuzz to a few select people, and was asked by her social worker, Shelia if she would meet a family with a 3 year old girl with Ewing's Sarcoma. We both met the family, and my heart is heavy thinking of the long journey they have just begun. It was nice to see some of Maggie's friends that she has made on the HOT unit, and to show this other family that treatment ends and life goes on.

Maggie will have her next set of scans the last week of December, and our next office visit on January 5th. If all goes well, we will discuss removing her port then. She had her port accessed and blood drawn and her port flushed.

We went to Mayfair after the hospital and met Emily, one of Maggie's nurses from the HOT unit for lunch and some shopping.

School is going very well for Maggie. Her teacher is wonderful. (Aren't all teachers and nurses?.

We love all the positive messages, and I wish the same happiness to all.

Maggie and Cindy

Sunday November 30,2003 5:35pm

Hi!!! Maggie has decided to update the page!!- First of all.... YEEAAAHHH!!! I am FINALLY in remission!!! YEEAAAHHHH!!!!!!!!- If you have not checked the page recently... At the top of the page there is a thingy that says "read journal history"-click on that and the entry my mom wrote awile ago will pop up. Thank you for all the nice messages in my guest book and we need ideas on what to do with the page now that I am done with chemo. My mom is back to her 2 12 hour nights a week now and is enjoying it. I had a bad cold for a few days this week and have been feeling MUCH BETTER lately.

Happy winter (Brrr) and have a fun and safe holiday.
Much love to everyone, Maggie and Cindy

P:S- don't get too cold!! :)

Tuesday, October 28, 2003 9:23 PM CST

Do you like Hermione and the Cat in the Hat?? (AKA Colleen and Maggie) This was for trick-or-treating on Sunday Oct 26th.

Today was the big scan day at CHW. 11 AM appointment to be injected for the bone scan went down the tubes when they weren't able to access her port, and we had to go up to Oncology Clinic and wait for a nurse to be available to access her port. So Maggie got injected at 12:30 and we came back at 3pm for the scan. Then MRI took much longer than usual, pushing everything back. We got home at 9pm. I worked last night and am operating on no sleep, so it just seems longer to me. Right now Maggie is eating a turkey and cheese sandwich, freshly showered, and about to get in bed.

She only has a half day of school tomorrow, and then we are going to Chicago for an overnight for Teacher's convention Thursday to Friday. We are going to American Girl Place for tea, doing some serious shopping and going to IKEA. A fun break for us girls. Betsy has to work, and is especially sad to miss IKEA.

I must go to bed. As us old nurses say, my dogs are barking.

Hoping for good scans,
Maggie and Cindy

Tuesday, October 21, 2003 11:50 AM CDT

I added a new picture to the top today, so that people can see some of the wonderful nurses at Children's who helped Maggie during her hospitlizations.

Yesterday, we got to stop the G-CSF shots for hopefully the last time.

Maggie's scans are scheduled for the 28th of October, and will take the whole afternoon. She and I are going to Chicago for a couple of days on the Thursday and Friday of that week during Teacher's Convention.

This week is the book fair at Richards School. Tonight and tomorrow night are the Family Fun Nights. Some of the 5th graders are doing some short plays for entertainment. Maggie is in a play called "Captain Castaways Captives." This is her first time doing a play. She is also playing the clarinet this year. Uncle Phil is going to come to the play, but Tuttie has to skip it because she has pneumonia.

We hope that during Maggie's next clinic visit we finally get to say that she is in remission. Our family and friends have been so much help during this year. Maggie was diagnosed on Oct 16th,2002. It seems like yesterday and years ago at the same time.

Happy Fall,
Maggie and Cindy

Saturday, October 11, 2003 1:14 PM CDT

Do you like the new background? Maggie saw it on her friend Colin's page and had to have it. I thought it was too scary. She is in the middle of putting all of the Halloween/fall decorations up in the house. Betsy is at work. Maggie and I went to a pumpkin sale at her school this morning and got some great pumpkins, some gourds that she had painted in art class and donated, and some great baked goods. Obviously she is feeling better after her chemo. Her counts on Thursday said she needed to continue the G-CSF shots, so we will check again on Monday.

We are having unbelievably delightful Indian Summer weather in Wisconsin. I am tring to convert Maggie to loving fall as her favorite season, as it is mine. This kind of weather makes it an easier sell.

Our van is in the shop, we had to follow it there yesterday. It died on Thursday night as I was backing out to go to work. Chris has lent me his car to use until mine is fixed. I am so lucky to have my Mom close by to call in an emergency. She drove me to work and picked me up on Friday morning after she took Betsy to work. And she had given me a AAA membership for my birthday, so they came to tow the car.

Maggie and I love telling people when they ask how she is doing that her protocol is done. She seems to know people every where we go. Thanks to Alice Anderson, a teaching friend of Uncle Phil's, she has been reading the newest Lemony Snicket book this weekend. Next week are Iowa tests at school. I work on Tuesday night.

Focusing our energy on good scans and tests,
Maggie and Cindy

Monday, October 6, 2003 11:00 PM CDT

One more dose of MESNA to hang, the fluids to run until about 1pm tomorrow, and then Maggie will have completed her chemo protocol. I can't believe that it has almost been a year since she was diagnosed. 10/16/02. Right now, she is asleep in my bed, all tuckered out from a long day of chemo and clinic. She took Krispy Kreme donuts and coffee to the staff of the clinic and the staff of the HOT unit.

So we will have scans the last week of October and our next clinic visit is on November 6th, and we will review the scans, lab values and all. If everything is good she will be declared in remission. We have every reason to believe that this will happen.

No school today or tomorrow, and she wants to be there so badly. Uncle Phil managed to catch us in the clinic, and Maggie loves seeing him. Tomorrrow evening we start the G-CSF shots until her shite count comes back up.

All of the literature I have read about Childhood Cancer in the last year recalls how ending treatment can be a scary time. But nothing has prepared me for how proud I am of my daughter. She has taught everyone alot about courage.

Lots of smiles,
Maggie and Cindy

Saturday, September 27, 2003 6:11 PM CDT

Happy Saturday. Fall is really here in Wisconsin, cool, breezy, and rainy. I broke down and turned the heat on Friday night. I always have the excuse that I have an immunosuppressed kid in the house, not that I am a wuss.

Maggie had a good week. She got to school everyday, and her counts were good enough on Thursday that she got to stop her G-CSF until after her next chemo. She has been having some pain in her leg, but she has been more active with school, and everything. We will check it out at clinc before her next chemo.

Speaking of her next chemo, it will be her last one of the protocol. It will be a year on October 16th since she was diagnosed. It has been such a long year, and then again, such a short one. Our friends and family have been such wonderful support to us. If Maggie's scans that will be done three weeks after the last chemo are clear, then we finally get to say that she is in remisssion. We are both looking forward to that day, but I am scared, too.

For the next year, she will have scans and lab work done at least every three months. She will be followed for the rest of her life with scans and labwork, for any reoccurence of the Ewing's sarcoma, or any other type of cancer.

Tonight, Maggie and I are watching some home decorating shows, and relaxing. We will be going out for breakfast with Tuttie in the morning for pumpkin pancakes. Betsy is working in the morning.

Maggie and Cindy

Thursday, September 18, 2003 6:22 PM CDT

Hi!!! It's Maggie typing the message today. Outpatient chemo went well altough I did not feel great afterwards. Uncle Phil stopped today and helped me study for my spelling test tomorrow. What a great uncle:) The weather here has been nice and you can tell that fall is almost here. There hasn't been much new lately here so I apoligize for such a short entry. There will be a more detailed entry from my mom soon so don't worry. Remember: I really enjoy it when I find a new entry in the guestbook so you can sign the it as many times as you want!!!
thanks a bunch,
Maggie

Monday, September 15, 2003 8:46 PM CDT

Outpatient chemo today. We got to clinic at about 9:15 and left at 4:45 pm. Pre-hydration, chemo, Mesna and post hydration. We came home with the IV running and I have already given one more dose of Mesna, with a second one due in 15 minutes.

Maggie got to see her picture that is hanging in the Skywalk gallery, and was thrilled to see it up. It is of a cat, naturally.

The Celebrate Life celebration at Hart Park yesterday was great. It was wonderful to see patients, families, and staff from CHW outside of the hospital atmosphere. Maggie, Betsy, Tuttie and I went.

Phil and Paul were lucky enough to see the Packers kick the Lions butts yesterday at Lambeau. Phil came over tonight to see his sweet little niece.

Off to give Mesna. Maggie's camping trip with her Girl
Scout Troop on Friday night was wet but fun. Her cough and cold are lingering, but what can you expect with all of the activities a 10 year old has??

Here's to a nice Fall (my favorite season of the year)

And yes, Julie, I am older, but wiser than you...........
Maggie and Cindy

Friday, September 12, 2003 2:36 PM CDT

In the last month and a half, Milwaukee has had 0.25 inches of rain. We need it badly. So, this afternoon, as Maggie is getting ready to go camping with her Girl Scout troop in platform tents, with no electricity, the dark storm clouds are gathering. Should be an exciting night.

Except for her lingering cold, and some allergies, Maggie has had a great week. She loves being back in school, and is having a great time in the 5th grade. I went to orientation last night at the school, and Mags spent some time with Tuttie. Uncle Phil had been over in the afternoon and they had done her math homework together. Thank heavens. Maggie's math program eludes me entirely.

Betsy is donating blood right now, a great thing to do. I am very proud of her. Sunday we are going to a Celebrate Life picnic sponsored by the Oncology Services at Children's at a park in Wauwatosa. Maggie will get her labs done at CHW while we are on that side of town. Then on Monday she has her second to last chemo. YEAH!!!!!

Sending good wishes to the Girl Scout Leaders and Chaperones.....you are appreciated very much.
Maggie and Cindy

Tuesday, September 9, 2003 12:42 AM CDT

We had the kind of weekend I call "flying under the radar".
We have to go to CHW if Mags temp goes to 38.5. She peaked over the weekend at 38.4 (This is Celcius).She got a cold and cough, too, and the ankle she had scraped on Weds at school was angry looking. So we went to Clinc yesterday morning to get checked out. Well, her counts have rebounded greatly, thanks to the GCSF, and she could even go back to school yesterday afternoon. Yeah!!!!

The cold is still bugging her, plus it is a horrible allergy time in Wisconsin. But school is the best place for her. She did play with Uncle Phil and do her homework with him after school yesterday. I work tonight, so Maggie will be at Chris' house.

Plans for the rest of the week include picture day at school, orientation on Thursday night, a Girl Scout campout on Friday night, and a Celebrate Life Picnic at CHW on Sunday. The picnic is in honor of Childhood Cancer Awareness month.

Then admission to Clinic on Monday for outpatient Chemo. She will come home with the IV running. And I will finish giving her meds here and deacccess her port.

Please sign the guestbook. Mags checks it every day!!
Thanks for all the love, support and prayers.
Maggie and Cindy

Saturday, September 6, 2003 6:49 PM CDT

Maggie made it to school for 3 days, but had to stay home on Friday because her white blood cell count and ANC (absolute neutrophil count) were too low. She was very bummed to miss school the first week. :( Tuttie stayed with her last night, and I went out for dinner with some dear old girlfriends.

This afternoon Maggie and I played Scrabble and for the first time SHE BEAT ME!!!!!!!! Good vocabulary for my little girl. She is doing a little gloating as I write this. Keeping a close eye on her temp, she is feeling kinda icky.

Lets hope for some great white cells and platelets on Monday.

Sign out guestbook!!!!!!!
Maggie and Cindy

Tuesday, September 2, 2003 12:58 AM CDT

I wish all of you could have seen Maggie on the playground at school this morning, with a whole pack of her friends, everyone excitied about the first day of school. Laughing, smiling, being a real 10 year old. She and her friend Megan wore the same outfit in an attempt to mix up the teacher.

Betsy and Maggie had a great time at the Justin Timberlake and Christina Aguilera concert last night. Good sister time. Betsy is very protective of her little sister.

Uncle Phil starts teaching 7th grade today. His school district transfered him to the Middle School. It is nice to have Phil and Paul back in Milwaukee.

This is the week where Maggie's white count usually bottoms out. We have lab work on Thursday to check. She gets the G-CSF shots every evening to stimulate her bone marrow. They hurt alot, and Maggie has gotten much braver with them over the last year.

My house seems so quiet today. This is Maggie's last year at Richards School. It is a very special place. I am biased though, as it is where I went to school.

It is 70 here, sunny and breezy. My kind of day.
Happy September
Maggie and Cindy

Saturday, August 30, 2003 7:14 PM CDT

We came home Friday evening at about 8pm. Friday, Maggie's chemo started at 7am, finished at 10am, and then the rest of the day is post hydration, Mesna, and other meds. Early to bed last night and today was unpacking, laundry, grocery store and catching up. Maggie is still feeling nauseous and tired. Tonight we are watching Trading Spaces and I am making baked beans for our block party tomorrow evening.

We were fortunate enough to be offered two tickets for the Christina Aguilera/Justin Timberlake concert on Monday night from a child-life specialist at Children's. A donor had sent them to her. I work on Monday night, so Betsy and Maggie are planning on a great Sister Night. Tuttie will come over on Tuesday morning when Betsy goes to work, and then I'll be home in time to get Maggie off to her first day of 5th grade.

Right now, Maggie is putting on her EMLA cream so I can give her Neupogen shot tonight.

Happy Labor Day, and an ever happier Beginning of School!!!!
Maggie and Cindy

Thursday, August 28, 2003 8:46 PM CDT

We have finished the fourth day of the last inpatient stay for chemo. Maggie had a reaction to the VP-16 on Wednesday, where they had to stop the chemo, give her more Benadryl (she had been pre-medicated with it already) and Tylenol and then run then chemo slower. Today they gave her the usual dose of Benadryl and some Tylenol and then ran the chemo at a slower rate. She did fine with it today, but was nervous and edgy throughout.

We did get to go out on a pass this evening for 3 hours. We went to Mayfair and ate dinner and then did some serious window shopping.

Maggie gets very blue and tired during these long hospitalizations. She is looking forward to going home tomorrow evening.

Have a nice and peaceful Labor Day weekend.

Maggie and Cindy

Tuesday, August 26, 2003 6:08 PM CDT

Day two of chemo of the last inpatient chemo for Maggie's protocol is done!!!!!!!!!!!!!! She has done really well with both doses of chemo. One of her friends from camp is inpatient also, and they are in rooms next to each other. It is so nice to see them doing girl stuff, drawing, watching Lizzie McGuire together.

And Phil and Paul are home safe and sound from Canada. I spotted Phil yesterday, and actually broke into a run to get to him. Maggie and Betsy and Tuttie and I are all glad to see him.

School starts in a week from today. Maggie is in a class with some of her best friends. She is more than ready to go back to school.

It is hot and humid but dry, no rain for over 3 weeks here. We should be home by Friday evening.

Maggie and Cindy

Tuesday, August 26, 2003 10:43 AM CDT

Yesrterday chemo went well. I want to go home alredy but I know I have to stay. Today I will get my chemo at 1 o'clook.
Yesterday Uncle Phil came home from his fishing camp in Canada. I was so glad to see him :)
I am felling OK right now but later I will get kind of icky feeling. We will try to get a oppointment with Dr.King to see if iI can get my activity lmitation lifted before school starts. I am very excited about school starting. My best friend Megan and I are in the same class so we are going to dress up the same for the first day to seee if our teacher will get our names mixed up.( we have done this before and it has worked)Well, I think that is all that's new around here other than it hasn't rained much:(
thank you for alol your prayers and support,Maggie and Cindy

PS; THIS IS MY LAST IN PATIENT CHEMO!! :)

Wednesday, August 20, 2003 6:10 PM CDT

Last week, Maggie had a great time at the day camp on Tuesday and Thursday at the JCC in Fredonia. Wednesday we went to see "Freaky Friday" at the Fox-Bay (which, for you former residents of WFB, has been beautifully restored, and is now a Cinema Grill).

A good weekend, but by Sunday Maggie was feeling sort of punk. We ended up with a visit to clinic on Monday to get checked out. Everything was okay. She went to the zoo yesterday with Emily, one of her nurses from the HOT unit and her husband. She has been cat sitting with her friend Colleen for our neighbors since last week. They go over twice a day and feed the cats and water flowers. Today Maggie and I went to get my hair cut, and then we went to Borders so she could spend a gift card she had forgotten she had since her birthday. A CD and a CD case. She is growing up so fast.

We will go to the hospital for labs on Sunday, and then we have a 9:30 Clinic appointment on Monday for admission for Maggie's last long run of chemo. She should be out of the hospital on Fri or Sat. Then school starts on Tues, Sept2.

Uncle Phil and Paul are due home a week from today. Watch for Milwaukee in the news on Labor Day weekend for the 100th Anniversary Celebration of Harley-Davidson. I think it will be a huge celebration.

Thanks for all of the continued support and help.
Maggie and Cindy

Thursday, August 14, 2003 10:02 PM CDT

I have been looking at old journal entries, as they are a good way to watch our progress through this long journey of Ewing's Sarcoma, and I realize that some recent journal entries have been deleted by mistake. So I will try and update things now.

Last week, Maggie had her chemo in clinic, and for the first time we went home with IV fluids running through her port on a small pump, and I gave some meds through her line at home during the evening, and then Mags got IV fluids through the night and I deaccessed her port in the morning. We only have one more long chemo (5-6 days) ahead of us and then two more of theses short ones all three weeks apart until her chemo protocol is finished.

The MRI Maggie had done July 31st showed, and I quote " no soft tissue mass and healing distal right fibula". What a wonderful thing. And Phil will be home from Canada during the middle of the long run of chemo. Maggie has missed him terribly, and is ecstatic at the prospect of seeing him and Paul.

Last week, we got to do some great end of summer things. The Wisconsin State Fair, grilling out. Maggie went to day camp on Tues and Thurs this week at the JCC camp in Fredonia with lots of kids from the oncology unit and their siblings. She is going swimming tomorrow with a friends family.

I have been to work once a week for the last few weeks, and Maggie has stayed at Chris'. All such normal things we had taken for granted.

Everywhere I go, people tell me how Maggie is in their thoughts and prayers. I know how much all of this has helped us all.

Maggie had good counts today, so she is done with her Neupogen for this round of chemo. Yeah!!!!

Happy Ides of August.
Maggie and Cindy

Monday, August 4, 2003 7:53 PM CDT

hi!! It's Maggie. Chemo went well, and I am excited to go to day camp in fredonia on Tuesday and thursday.
Uncle Phil comes home in 17 days! I miss him tons. There isn't much new going on in here at home. I am glad that I didn't have to stay in the hospital overnight.
Thanks a lot, Maggie ( and Cindy too)
Remember you can sign the guestbook more than once!!

Friday, August 1, 2003 4:34 PM CDT

AH, the joys of the internet. My computer is home and all fixed. No one is happier than Maggie, as she and her friends like to do the instant messenger thing.

Another busy week. The Sam Casey and Friends basketball camp was on Monday and Tuesday morning. Maggie had fun there, although she isn't supposed to run or jump. She just liked being with other kids and some of her friends. They had lots of door prizes. Many thanks to the people who organized it and worked at it, as well as the participants.

Tuesday afternoon Maggie, Tuttie and I went to the orthopaedic surgeon who did my shoulder repair last summer. He feels that Tuttie needs a shoulder replacemnt, but that it is down the road some.........she will be able to buy some time with steroid shots into the joint. Good news!!!!! Then Maggie and I went to the dentists office so I could have a broken tooth fixed, and so all of the staff there could fuss over Maggie. She loved all of the attention, and it makes my heart swell with pride to have all of these people pulling for this sweet child of mine.

I worked Wednesday night, 12 hours, and Mags had fun with her dad. Thursday afternoon, we went to Children's for lab work, a Chest Xray, a Chest CT and an MRI of her leg. CT results are good, and she was able to come off the Neupogen. Which is good, because she has to be off the Neupogen for 24 hours at least before we have labs done on Sunday for hopefully her first outpatient chemo on Monday morning. She will come home with her IV fluids running for awhile. I'll know more after we do it on Monday. I'll get the MRI results on Monday.

It is hot and humid on the first day of August. Happy Birthday to Charlene Berney!!!!

Love,
Maggie and Cindy

Sunday, July 27, 2003 11:55 AM CDT

Busy week this last week. On Monday Maggie appeared on the morning news with the 3 other kids whol will all benefit from the basketball camp being held at St. Monica's on Monday and Tuesday morning. Then labs at the hospital and shopping for Betsy's birthday.

Tuesday, some friends came over to see Maggie in the morning. We had a nice visit.

Weds night I worked, and Maggie and Chris went to Music in the Glen in Glendale, where Chris lives. Thursday was Betsy's 20th birthday. The three of us went to lunch and had lots of fun. Labs in the afternoon, and that evening Maggie and Chris went to the Brewer's game courtesy of a children's foundation.

Friday night Maggie had Colleen sleep over. Her labs on Thursday showed she is very neutropenic (low white count). She is not feeling all that well. From Wednesday through today, Maggie has been cat sitting for the people next door. She likes having a job.

Saturday night I was supposed to work, but was cancelled, so Maggie and Chris spent the evening together, but she came home and slept in her own bed. Tonight is a party at her friends house, the friend that is moving back to Finland. Then basketball camp in the morning and labs in the afternoon. I hope we can stop the G-CSF shots.

Maggie and Tuttie are having fun right now while I use Tuttie's computer. Mine is in the shop.

Let's hope for good counts tomorrow,
Maggie and Cindy

july 21

yeah!!!!!!!!!!!! home finally!
I am feeling good and had a wonderful time at camp. Our home computer is not working- so I am using the one at the library for now. Chemo went well with no reactions to the VP-16. There will be a basketball day camp to benifit me and 3 other kids in whitefish bay. There are flyers all over but you can ask my mom more about it. thank you for the support -maggie

Sunday, July 6, 2003 7:35 PM CDT

Yesterday, Betsy, Tuttie and I took Maggie to camp in Lake Geneva. The YMCA camp in Lake Geneva is beautiful. On our way there, we found the cabin Tuttie's parents rented when she was a youngster and teenager. It is so wonderful to have read all of the diaries of Alice (Tuttie's mom) during those years and now be able to put it into context.

Maggie had a bone scan and CT scan last week to check on the source of her pain, and they came back with no sign of the tumor or fracture. So I was relieved to know this before Maggie went to camp. One of nurse practitioners from Maggie's clinic will be at camp for the week she is there. So I am am even somewhat relaxed while she is gone.

Mags will be at camp until Saturday morning, and then we go into Children's for a long stay of Chemo on Monday the 14th.

Maggie and Cindy

Monday, June 30, 2003 3:05 PM CDT

I am at the library while Maggie is at a activity here, using the wonderful computers they have. Ours has been acting up, that is why I haven't gotten new pictures downloaded yet. Last Friday, Maggie came to a magic show here at the library and today is a craft project.

After we are done here, we are going out to Children's for labs, so hopefully we can stop the Neupogen. Maggie's skin is getting so sensitive, and now the thin occlusive dressing that we put on over the numbing medication is giving her a rash.

She is nervous about going to camp on Saturday. The camp is in Lake Geneva, at the YMCA camp just down the road from the cottage where Tuttie used to spend her summers as a child. She is excited to come with us. Betsy is taking the day off of work to come along.

I am trying to get to work more, and will go on Wedsnesday night. Maggie and I went to a party at our friend Nellie's house yesterday, it was a very relaxing and enjoyable time. Nellie is having surgery to resect her Melanoma tomorrow (Tuesday), so keep her in your thoughts and prayers.

Summer is here, hot and humid,
Maggie and Cindy

Wednesday, June 25, 2003 4:59 PM CDT

It is hot and humid today, with severe thunderstorms predicted. Maggie has been busy reading her Harry Potter book. She should finish today or tomorrow. We go to the hospital tomorrow for labs. This is about in her cycle when her counts bottom out. She is up in her room right now looking for her watch so she can go watch baseball over at Lydell.

I forgot to share some great news from the end of school. Maggie applied for, and was chosen as a peer mediation counselor for next year. She will have training in the fall.

Betsy and Maggie have their own phone card, courtesy of Uncle Phil to call him in Canada this summer. Maggie thinks this is the coolest, as she can call him any time she wants. He likes talking to her.

Be safe, lets hope for good counts.
Maggie and Cindy

Saturday, June 21, 2003 7:30 PM CDT

Did everyone see the news reports about all the Harry Potter book? Well, Maggie and I were part of all of that.
We went to the Barnes and Noble at Bayshore at 10:30 last night until almost 1 AM. They had activities, prizes, lots of kids dressed up and we got the book!!! Maggie is on page 131 of the 870 page book. Lots of her friends were there. At 11:30 I would have said that it was too late, but the look on Maggie's face at Midnight was priceless.

We got out of the hospital at noon on Thursday. Dr. King, the orthopedic oncologist wanted Maggie to have some instruction from the physical therapy department but they were unable to come and see us on Thursday, so I scheduled the appointment for Monday, when we have to go to the hospital for labs, but they called on late Friday afternoon and said that my insurance will not cover outpatient PT at Children's. I will have to find out where we can go.

Monday afternoon Maggie is going to the Whitefish Bay public library in the afternoon for a summer art program.

Right now, Maggie is on the couch in the den, trying to watch Trading Spaces and read her book at the same time.

Here's to good books,
Maggie and Cindy

Wednesday, June 18, 2003 4:51 PM CDT

Scheduled admission today for chemo. According to the protocol that Maggie is on, she is done with one of the chemotherapy drugs (she has recieved the maximum dosage), so starting in 6 weeks, when she has this cycle, it will be outpatient, with the posthydration done at home. Yeah!!!
This time we will stay overnight and leave in the morning. She has already had the other two meds, the cyclophosphomide and the vincristine, for this cycle about an hour ago.

In three and a half weeks (slight delay due to camp) she will have the 5 day inpatient cycle of Ifos and VP-16.

It is always nicer to spend nights at home.

Maggie had an Xray of her ankle today, as it has been hurting her the last few days. Nothing new showed up on the Xray. Probably just too much bike riding now that her boot is off.

I need to order up some prayers for Maggie and my friend Nellie, who was recently diagnosed with Melanoma. She has been a big help to both of us, and we care for her alot.

3 days until the new Harry Potter book,
Maggie and Cindy

Saturday, June 14, 2003 12:31 AM CDT

Well, school is out for the summer. Maggie had her transfusion on Tuesday, and went back to school on Wednesday afternoon for the end of the year fun. She gets very achey after a transfusion. School got out at 11:40 on Friday.

Yesterday afternoon Maggie went to a going away party for a classmate who is moving back to Finland with her family. They have been here since Maggie was in Kindergarten.

Yesterday evening, a big step forward for both Maggie and Cindy. Maggie went to a birthday party sleepover and stayed overnight. They went bowlilng, and the Mom and I had set it up earlier to have Mags put her EMLA cream on on the way home, and then I went over to the party later and gave her her G-CSF shot and her pills. She had labs on Thursday and her white count was somewhat better, but not good enough to stop her G-CSF. I picked her up tired and happy this morning. She is out riding her bike right now and will spend time with Chris this afternoon and both girls will spend tomorrow afternoon with him.

Next weeks plans include labs at Children's on Monday and Tuesday, and admission on Wednesday for chemo. We moved it up a day so that we will be sure to be out for the Harry Potter release party at Midnight on Friday. We are going to one at our local Barnes and Noble.

We miss Phil and Paul alot. They left for Canada on Thursday morning. Maggie and Betsy have their own phone card to call any time they want.

Maggie and Cindy

Monday, June 9, 2003 7:39 PM CDT

Nice weekend here. Some nice booming thunderstorms on Sunday. Tuttie had gone to Atlanta, and we picked her up at the airport on Sunday.

Maggie had labs done after school today. We got the call from clinic early this evening to bring her in first thing in the morning for a transfusion of red blood cells. If her temperature goes up tonite we will be admitted, or if it goes up during the transfusion. Our plan is to go to clinic and have the transfusion in the morning and then come home and recuperate. We want to have supper in the evening with Phil and Paul, as they leave on Wednesday for Canada for the summer. Lets hope all goes smoothly. Maggie's white blood cell count is very low (0.7) and her ANC is 182. They like her ANC at least 500, it has to be atleast 1000 for her to get chemo. Her hemoglobin is 7.7. She is very bummed to miss school tomorrow.

Maggie and Cindy

Thursday, June 5, 2003 4:56 PM CDT

Today was the Spring Sing at Richards. Maggie and the rest of the fourth grade were singing their little hearts out. Afterwards, the parents and kids get to have lunch on the lawn in front of the school. The top picture is Maggie and Colleen enjoying their milk.

Maggie only made a half day of school yesterday, Wednesday, as she was too tired and nauseous and had to come home.

I am learning more all the time about this technology stuff, and have added some links at the bottom of the page where you can read about Ewing's Sarcoma. Don't forget to sign the guestbook every now and then.

I can't believe school is out in a week. We had lab work today.
Maggie and Cindy

Tuesday, June 3, 2003 9:34 PM CDT

We came home this morning around 10 o'clock. Maggie, the brave, went to school this afternoon. She had painted a picture of a sea turtle for extra credit for a unit they are doing on sea animals, and she took that with her to school. She was beat this afternoon after school. Early supper, and she went to bed early.

I went to the grocery store to refill the fridge and did some lawn work this afternoon. If we don't have rain tomorrow I plan to put in a flat of flowers that Paul started from seed for me. Maggie has loved to putter in the dirt and flowers the past few years, but she is supposed to stay away from gardening this summer while she is immunocompromised, due to the molds present in the dirt.

Thursday morning is the Spring Sing at Richards School. I'll try for a good picture there.

It's great to be home.
Maggie and Cindy

Monday, June 2, 2003 6:35 PM CDT

Chemo is over for this admission, but Maggie is finishing up with the Mesna( to protect her bladder) and the 12 hours of post-hydration. We will probably get to go home in the morning. She is in her bed, having some fruit that Chris brought her right now. She wants to go home very much. She misses her friends, Tigger and Betsy.

No further problems with the chemo after the first day. She is very tired. This is week 30 of a 50 week plan of chemo. So, we are past the half-way mark. This morning we did a puzzle with her nurses, and she worked with the art therapist later. I can see how much these people care about my special kid, and for that I am very grateful.

Phil has a cold-send him some positive karma. It's hard for him when he can't come to see Mags.

I'll have to see how Maggie perks up after this chemo to see when she will go back to school. She wants to go tomorrow, of course. She just doesn't seem to have alot of reserves to fall back on.

Happy June,
Maggie and Cindy

Saturday, May 31, 2003 5:29 PM CDT

Today is the "hump day" of this 5 day chemo treatment. Maggie had a reaction to one of the chemo agents on the first day of treatment. This has happened twice before. She is pre-medicated before the chemo with IV Benadryl, and that usually does the trick. Maggie is so smart that she knows the signs of the reaction, and she let her nurse know this time. "I'm having a reaction to the VP-16." She got more benadryl, they slowed down the infusion, and she was fine. It scares all of us when this happens. Yesterday went smoothly.

Tuttie came to visit yesterday and today. It gives me a chance to get out of the hospital sometimes, and breaks up the long days.

Betsy is at home taking care of Tigger and settling in. Maggie is simply thrilled to have her home.

We've had other visitors too, Phil and Chris. And Maggie has met some more of the kids she will be going to camp with in July. The camp is called Camp One Step At A Time. All of the kids who have gone said this is a positive experience, and the staff here at Children's raves about it. She will go July 5 to the 12th.

Happy Belated Birthday to Joan Ackerman!!!!
Maggie and Cindy

Thursday, May 29, 2003 3:55 PM CDT

We were admitted this morning for scheduled 5 days of chemo. Usually Maggie has to post-hydrate after this chemo, so we should be in the hospital for 6 days. Her blood counts were good, and the chemo hasn't started yet, so she still feels pretty good.

Maggie recieved news from the Art Therapist that in September they will be opening an art exhibit here at Children's with artwork from the kids. They plan on exhibiting a painting she did of a cat. She is very proud and happy about this. She has done two more paintings today. She was not thrilled about coming to the hospital for this admisssion, so this was good news. This should be the last admission to interfere with 4th grade.

Yesterday evening, Maggie went to see her soccer team play. The most exciting news at the house is that Betsy moved home over the weekend. She has been living in an apartment since September. She is working on a medical-surgical floor at St. Mary's-Milwaukee as a nursing assistant. Maggie loves having her big sister at home.:)I do too. And Tigger thinks it is purrrrfect.

Here's hoping for a smooth run of chemo.
Maggie and Cindy

Thursday, May 22, 2003 7:22 PM CDT

Maggie was home from school on Monday and Tuesday with a cold and cough, low grade fever. She managed to meet my criteria for her being able to go on the field trip on Weds. to Madison with her class. The criteria was normal temps and not up all night coughing. She came home exhausted but very happy on Weds afternoon. I jokingly asked her if Chris Platzer (a mom friend who was chaperoning) had hovered, and Maggie said that all of the moms on the trip hovered over her. It makes me feel safe and reassured knowing how supportive everyone is of my precious little girl.

Today (Thursday) after school we went out to Children's for lab work, and got the call after we got home that her counts are high enough for her to stop the Neupogen and no more lab work until the scheduled lab work before her admission next Thursday. Yeah. Her hemoglobin is a little low, and if she gets symptomatic I will have to take her in for a transfusion.

So we have a three day weekend coming up. I have managed to catch Maggies cold, but will do my best to shake it. Betsy was over today, and Maggies face lights up when she spots her sister.

Happy Memorial Day weekend.
Have fun,
Maggie and Cindy

Monday, May 19, 2003 7:37 PM CDT

Maggie made it to school all last week, but has been laid low since Friday with a cold. Low grade temp, just flying low enough under the radar so we don't have to go to the hospital. Now she has a rattely cough too. Didn't go to school today, and will stay home tomorrow also.

Wednesday is the rescheduled field trip to Madison for her class. Mags will be hugely disapointed if she can't go.

We went to Children's for labs today. Her white count is low, and her ANC (Absolute Neutrophil Count) is low also. She will continue on the Neupogen until at least Thursday to stimulate her bone marrow to produce some white cells.

I ran out this afternoon while Uncle Phil was over to go to the pharmacy and the library, and when I got back Maggie and Phil had resumed the never-ending Monopoly game.

Maggie and Tuttie are American Idol fans, and talk to each other before, during and after the show. She needs the telephone now to make one of those all important calls

Thanks for everything,
Maggie and Cindy

Sunday, May 11, 2003 4:11 PM CDT

HAPPY MOTHER'S DAY TO ALL THE MOMS OUT THERE!!!!!!!!!!!!!!!

Maggie's doctor adjusted the chemo times around, and we were able to come home at 8pm on Friday. Not that things aren't nice at Children's, but it is always better at home.

Yesterday, Maggie treated her friend Colleen and I to the "Lizzie Macguire Movie" at the Fox-Bay. She had received some gift certificates for her birthday, and we had a great time. It is a cute movie. Then she spent the afternoon with Chris and came home for some snuggling and TV. She was pretty nauseous from the chemo most of the day and last night.

Maggie served me breakfast in bed this morning(toast and strawberries), and right now she and Betsy are at Chris' to celebrate his birthday. Tuttie, Phil, Paul, Betsy, Maggie and I will have supper here this evening.

Maggie is thrilled to be out of her boot, but she has some restrictions on her activity. Only walking, stairs and her bike. No running or jumping. The bone needs to be protected. The muscles in the lower part of the leg are weaker, but that should resolve soon. If it doesn't she will have some physical therapy.

Thanks to everyone for all of their support. I was very nervous and edgy waiting for results of the tests, and I am very lucky to have such great friends for support.

Love,
Maggie and Cindy

thursday,may 8th 2003 4:45 PM- WI time

This is Maggie typing today. Today I was addmitted for the shourt run of chemo,and the echo results are normal,so is the heart test (ekg)that i had done today. But today I have news even better than anything so far. Drumroll Please!!! I GET TO HAVE MY BOOT OFF AND CAN GO DOWN STAIRS AND WALK AND SLEEP WITH OUT IT!!!!:D No running though,but I can go to school with out it. The boot may have to go back on if it hurts too much but I have been walking around and it doesn't hurt. Well, that is all the news for now, and I am SO excited to go to school with out the boot.
thanks again,
magggie and cindy( even thought I did the message)

Wednesday, April 30, 2003 5:23 PM CDT

Home again, home again. Maggie's blood cultures were negative, and she did not have a fever after the first one when we got to the hospital, so we got to go home today.

But two devlopments.

She had a transfusion of 2 units of packed red blood cells yesterday, and tolerated it well, except she had some headache and body aches during the night. Her hemoglobin pre-transfusion was 6.5 and she was symptomatic. Tired, with a high heart rate. All better now. Her color is better and pulse is better.

AND............we got to have her scans done today, thanks to the great people at Children's, especially Jenn, the wonder nurse who called and arranged it. So we don't have to go back tomorrow. We hopefully will be called with the results on Friday. Friday Mags has to go in for blood work.

No school this week, but it is a four day week. No school on Friday.

Uncle Phil is here to visit right now, so I'll go. I hope to work on the pictures tonite.

Hoping and praying for good news.
Love to all,
Maggie and Cindy

Monday, April 28, 2003 6:33 PM CDT

Remember in the last journal entry how I was worried about Maggie's cough? She was up most of Sunday night with the aforementioned cough, and awoke with a fever on Monday morning. I called the clinic, and they said to come to clinic and pack a bag. Mags was upset about missing school, but managed to do a few art projects this afternoon. She had blood cultures, labs and a chest X-ray done. She started on antibiotics. I'm hoping it is just a scare like last time, and we are out in a few days.

Her white blood cell count is very low, as is her hemoglobin. I'm not sure if she will get a transfusion or not.

I had put a picture on her home page, and then I didn't like the layout. I will figure that out when we get back home, and I will re-post the pic of Tigger doing the puzzle due to popular demand.

Remember those prayers for Thursday.
Love,
Maggie and Cindy

Sunday, April 27, 2003 10:02 PM CDT

A very good weekend, Maggie is just tucked into bed (at the late hour of 9pm) after going to see a movie, Holes, with Uncle Phil at the Fox-Bay. She has had a dry cough for a couple of days which just gives me something else to worry about. I'll call clinic tomorrow to talk to them about it. I am worrried that it could delay her scans that are due on Thursday afternoon, as she wouldn't be able to hold still.

I went to work on Thursday night for 12 hours for the first time in over 6 months. The hard part was seeing all of my dear friends. Everyone is so concerned about Maggie. Chris stayed with Maggie until 10pm and then Betsy came over to spend the night. Maggie loved waking up with her big sister in the morning.

Today was a gorgeous spring day, sunny and warm. Maggie wanted to play outside all day, but we have to be very careful with the sun, the chemo leaves her more susceptible to it. I snapped the picture of her and Tigger at the top of this page this morning.

Labs tomorrow and Thursday, with scans scheduled for Thursday.She will have a bone scan, a CT of her chest and leg and an MRI of her leg. Plus assorted regular X-rays. I would like to order up good thoughts, prayers and some plain old fashioned good luck for that day.

Thanks to all,
Maggie and Cindy

Tuesday, April 22, 2003 2:59 PM CDT

Do I say this every time? There's no place like home. They told us yesterday that Maggie could go in the morning as soon as she woke up, so at 4:30 when she got up to go to the bathroom, she was bound and determined to leave. I had mentioned to her that we could go at 6 or 7, but we signed out at 5:15 and left at 5:30. Came home, rested a little bit, and the Magnificent Maggie went to school at 8:00. I came home and took a nap.

On Easter Sunday, the Easter Bunny brought Maggie and I both baskets (from donations to the unit). A family who has a daughter who is a cancer survivior brought a wonderful homemade brunch up to the unit for the patients, their families, and the staff. It was so nice. Maggie ate two hot turkey sandwiches. The mom from the family dressed up like the Easter bunny and visited the kids who couldn't come out of their rooms. The kindness and generosity of everyone is so welcome and always touches my heart.

Off to do some laundry and collect my amazing Maggie from school.

OH!!!!!!Maggie's next scans are on May 1st. Lots of positive energy and prayers for that day.

The sun is shining, not a cloud in the sky as I write this, so Happy Spring!!

Maggie and Cindy

Saturday, April 19, 2003 1:29 PM CDT

Today is hump day, the third day in Maggie's 5 day run of chemo. She has done very well this admission, partially because we managed to go to another party!! They had an Easter party on the HOT unti Thursday when she was being admitted, so she and I went down and had some sweets and did some serious arts and crafts.

Today another dad on the unit showed me how to make a smoothie with ingredients ordered from the room service menu. So Maggie had a smoothie made from fresh strawberries, half a bannana, yougurt, orange juice, crushed ice, and put granola on top. She was in heaven. Then the archbisiop of Milwaukee stopped in on the HOT unit and gave have a chocolate egg.

I am at Mayfair Mall(the computer at the hospital is not working) using the cable kiosk computer to check my email and update Maggie's page. If Paul was in town, I'm sure he would be here at Mayfair with me. He and Phil are in Florida until tomorrow.

Thanks for all the wonderful new messages. We both appreciate the support.

Love,
Maggie and Cindy

Wednesday, April 16, 2003 9:16 PM CDT

Just finished packing for planned admission to Children's tomorrow for Maggie's long run of chemo. 5 days of chemo plus at least 12 hours of post hydration, so usually a 6 day admission. Maggie is on Spring Break until next Tuesday, so hopefully she won't miss too much school.

Maggie has had a cold since Saturday. We checked with clinic on Monday and they said as long as no fever, with goood eating, drinking, etc and if her counts stay good to plan for the admission this week. So lets hope her counts stay good tomorrow morning. They were very good on Monday.

The bad thing about the cold is that we had our two days of Wisconsin spring:) the beginning of this week, and Maggie wasn't able to get out too much to enjoy it. We did get very creative today and have a birthday party for Tigger. By our best estimates, he was born 17 years ago. Any excuse for ice cream and a cake. Maggie's friend Colleen and her brother Max, and their mom and Tuttie came to celebrate with us. Chris also stopped by. Now Tigger has a great new assorment of catnip mice and toys to scatter around the house while we are gone. He gets upset when the suitcases are in the living room, as he knows we are leaving him. He is quite social for an old beast.

Let's hope for good counts tomorrow, and a smooth run of chemo.

Thanks for the support and love,
Happy Easter and Happy Spring
Maggie and Cindy

Thursday, April 10, 2003 10:49 PM CDT

This week has been another good one for Maggie. She has been to school every day, and didn't have to leave early a single day!! The only disapointment was that the field trip on Monday had to be rescheduled due to a spring ice/snow storm.

After each round of Maggie's chemo, she recieves injections of Neupogen(or G-CSF) subqutaneously (a short needle into the fat of her leg versus into the muscle) for 10 to 14 days, until her counts bottom out, and then are back up to certain levels. This is all predetermined by the protocol she is on. Maggie says the shots hurt alot, but she tries to be brave. We put EMLA, a skin anesthetic on for an hour or so beforehand. EMLA is a wonderful thing for kids when they have to have their ports accessed, blood drawn, or shots. It has been recalled by the FDA this spring, as it did not have childproof caps on it. It will be back this summer. To make a long story short, I was at the grocery store last weekend, and decided to check with the pharmacy there, as my wonderful local pharmacy has dispensed all they could get. I was able to get a large tube of this wonderful cream. They called my pharmacy to get my prescription and I came home feeling like I had found a million dollars. The reason I am sharing this story is to let you all know how much I appreciate every little thing that every person does to help Maggie. Our local pharmacy, Fitzgerald's has gone out of their way to order things in for her and to keep our spirits up every time we are there. Which is quite often.

And today they had a Hawaiian day at school, and Maggie was up on the stage doing the hula with the dance troop. What an amazing kid she is.

Spring is back in Wisconsin, which means it will probably snow this weekend. Maggie's counts were good enough today, when we had labs done after school, that she is done with the G-CSF until after her next chemo.

I had forgotten to embarass Julie Schleck regarding her recent 45th birthday, so now I can do it on the World Wide Web. What an amazing thing technology is.

I better sign off and go to bed, I can ramble even on the Web.

Maggie and Cindy

Monday, April 7, 2003 11:57 AM CDT

Maggie had a really good week last week. First, all of the birthday hoopla, and she was at school everyday for the whole day except on Tuesday she had to leave at 2:30 pm for an appointment with the radiation oncologist. He said, in a nice way, that he hoped to never see us again. Her burn is healing very well, and the old dead skin is falling off. Her lab work on Tuesday and Thursday was as expected, pretty good, and on Saturday she went to a Girl Scout First Aid workshop in the morning.

Betsy and Chris were over yesterday, Betsy and I did her taxes, and we had pot roast. Maggie and Betsy played with alot of Maggie's new birthday toys.

The fourth grade was scheduled to have a field trip to Madison today, but it was postponed due to a winter weather warning. It is snowing and 45mph winds. Sounds right for April in Wisconsin. Maggie was disapointed about the field trip. We will drive out to Children's after school for blood work.

Maggie is scheduled to be admitted to the hospital on the 17th for her long run of chemo. Most of that will be over Easter break. She will have studies of her leg done in about 5 weeks, to see the results of the most recent chemos and the radiation therapy. She will have a bone scan and an MRI done. Sometimes a Chest Xray also.

Thanks for the support,
Maggie and Cindy

Tuesday, April 1, 2003 11:55 AM CST

Well, Maggie is 10 and proud of it. She had a small party for some girlfriends on Sunday night, and then last night was the family hulabaloo. We also took treats to her class yesterday afternoon.

Her favorite present was a packet of coupons from Betsy for quality sister time doing different things, like the zoo, games, museum. She also received a huge assortment of gift certificates from the fourth grade families at wonderful Richards School. Fast food, the variety store, movies. She loves and appreciates everything.

Today we have a follow up appointment with the Radiation Oncologist. Her burn is all healed, just the dead skin sloughing off. Then Labs over at Children's. It is sunny and in the 50's today. Tomorrow Maggie's class has a field trip to see a play.

Hopefully no other trips to Children's this week except for more labs on Friday.

I can't begin to express to everyone how much over a thousand hits to the website or all the messages of love and support mean. We are very fortunate.

Now to try more picture loading!! Wish me luck!

Maggie and Cindy

Saturday, March 29, 2003 7:21 PM CST

Wow!! This morning we got out of the hospital the earliest we ever have been able to. Maggie's chemo finished at 12:30 AM, and then we slept through the night. We left the hospital at 9AM.

So we have laid low today, took a little snooze this afternoon, and now we are doing our Saturday night special, watching Trading Spaces.

Tomorrow is a small and giggly birthday party for a few of Maggie's friends. Pizza and a video.

Monday, on Maggie's bilrthday we are having a small family party with Tuttie, Phil, Paul, Betsy, and Chris. In keeping with the Italian theme we will have lasagna. Look for some new pictures on the web site some time next week.
Don't you love the one of Tigger doing the puzzle? Maggie set it up (with a cat treat) and took the picture herself. She is very creative.

Hopefully, school this week.

Thanks for the support.
Love,
Maggie and Cindy

Friday, March 28, 2003 12:06 AM CST

Maggie was admitted to the HOT unit at Childrens yesterday afternoon for her short run of chemo. She had a routine echocardiogram before her admission. It was normal.

So last night was settling in and getting chemo. She had some leg pain during the night in her other leg that is a side effect of the vincristine that she got. Her wonderful nurse (all nurses are wonderful) called the resident and got her some IV pain medication which worked wonders.

Right now, she is in the playroom with the Child Life Specialist, trying to find an arts and crafts project to do. We will go home tomorrow.

Maggie's 10th birthday is on Monday. She is very excitied to be in the double digits. I can't believe how fast she has grown up. I am so very proud of her.

I (Cindy) picked the new color and background today because it is very cold and dreary here. Also, this wonderful organization, Caring Bridge, just got some more backgrounds for us to try. I hope it meets with Maggie's approval.

Thanks for everything.
Maggie and Cindy

Monday, March 24, 2003 12:58 AM CST

This is Maggie typing the message again. w It feels great for radiation to be over but the skin in peeling off on the radiation burn, just like a sunburn. Tomorrow we plan on being admitted for the short dose of chemo. We plan to be home on Saturday, Sunday morning at the latest. We are in the middle of packing but we are only taking one suitcase, but I need a whole backpack of stuff to do. I felt like changing the backround again, because every one needs a change every now and then. School is great, and i'm not going to miss that much ( only two days). My teacher is really nice and when I do miss alot of school my awesome Uncle Phil helps me get caught up again.
Don't worry be happy and thanks for help and support,Maggie

Wednesday, March 19, 2003 4:00 PM CST

There's no place like home. The resident physican came in Maggie's room at 2:30 and asked if we wanted to go home. Why argue with a good idea? We can skip labs tomorrow but we have to go to clinic on Friday at 1:30. So we got home about 3:15. It is 32 degrees and pouring rain. Tigs is happy to see us.

I think Maggie will skip school for the rest of the week, so we can beef up her immmune system. There are also lots of nasty bugs going around.

So we are back to me nagging Maggie to drink more water and all of the sweet pleasures of home, like my own computer I don't have to share with 25 other families. We are very lucky to be able to have internet access on the unit. It is a lifesaver at 4AM.

Thanks for all the messages. Sign Mags guestbook and leave her a message!!!!!!!!!!!!

Maggie and Cindy

Tuesday, March 18, 2003 3:55 AM CST

We are in the hospital, as Maggie devloped a fever last night (Monday evening) and she was admitted to the HOT unit. She had cultures done in the ER and was started on IV antibiotics. She awoke with a sore throat on Monday morning.

She didn't get to go to school on Monday, as she had too much pain in her leg from the radiation burn. She can't tolerate any weight on that leg at all right now.

They say it is unusual that not to have had a fever admission by this point in treatment, but it is still discouraging. Maggie's spirits had improved since we got home after her last chemo, but she felt crummy this evening.

So, I will keep everyone up to date with this web page. I am glad to be able to share info this way.

Maggie and Cindy

Saturday, March 15, 2003 6:17 PM CST

HOORAY!!!!!!!!!!!!!! Yesterday was the last day of radiation therapy. The wonderful perople at radiation therapy gave Maggie a graduation certificate, and some special presents. Maggie had such warm,caring people working with her. She said "I want to keep going to see them, but not to get the therapy. I really like everyone."

So we had a little pary to celebrate graduation from radiation. Two of Maggie's best friends came over for pizza and cake, Uncle Phil got cute favors for the girls, Betsy, Tuttie, Uncle Phil and one of the moms of the girls came and celebrated with us.

On the down side, Maggie has a bad radiation burn on her leg. We are lucky that skin is still intact, and we put the lotions on that the doctor recommended. It hurts Maggie alot, and today we laid low and she took her pain medication. Tuttie came over and played Scattergories with her while I went out for some air. It was beautiful here in Milwaukee today, in the 60's and sunny.

Maggie did get to school for awhile on Friday, but the pain was a bit much. The burn should heal in a couple of weeks. It is supposed to get worse before it gets better.

Right now, Maggie and I are watching Arthur on PBS. We plan to have some dinner soon and watch TV.

All of the messages and hits to the Website are wonderful. I give the address to more and more people every day.

Keep us in your thoughts and prayers. Love and thanks to everyone.

Maggie and Cindy

Monday, March 10, 2003 6:31 PM CST

Maggie has finished recieving her chemo for this hospital stay, but will remain in the hospital until the morning for hydration and to recieve some medications IV that fight the side effects of the chemo drugs. This has been a very tough hospitalization for her. She has been downhearted and homesick all of the stay. It will be great to go home tomorrow. The great staff at Children's does everything they can to help, but sometimes you just have to be sad. I know my optomistic sweet girl will be back in a little bit.

She has 4 more radiation treatments to go. Today, some of the radiation techs gave her some socks with cats and smiles on them.

Maggie and I appreciate all of the supportive thoughts and prayers we are lucky enough to recieve. We are so fortunate to have such good friends and family.

Maggie and Cindy

Friday, March 7, 2003 6:56 PM CST

Maggie is in the middle of her second dose of chemo during this five day run of chemo. She had radiation all this week, but it is a good thing that she will not have it over the weekend, as the radiation burn on her leg is somewhat worse today. They took a look at it during her treatment and gave us another cream to try.

She tries all the time to be strong and brave, but this afternoon she was sad and blue. She is having a little snooze right now during her chemo, and will most likely wake up feeling better.

If all goes as scheduled, she will complete her radiation therapy next friday. Bunny-bunny goes with her to therapy every day and always is with us during admissions. All of the technologists in radiation therapy appreciate how special of a child Maggie is, and show Bunny-bunny the appropriate respect.

Thanks for your love and support.
Maggie and Cindy

Wednesday, March 5, 2003 1:15 PM CST

Maggie is at school today, and I am packing for our admission to Children's Hospital of Wisconsin tomorrow. We will be there 5 to 7 days. Maggie's radiation treatments continue every day, Monday through Friday. Hopefully, the last treatment will be next friday. All of the people in radiation have fallen in love with Maggie, and ask her about school and make sure she is doing okay every day. She does have a radiation burn on the back of her calf, but it has not gotten any worse since last week. It is like a bad sunburn. Maggie puts lotion and aloe on it every night.

Maggie's spirits continue to be mostly positive. She is very motivated to attend school where she feels the most "normal". Her friends and their families have been great. She is more tired from the radiation, and I am glad she will sleep alot in the hospital. I worry (among other things) that she pushes herself too hard to go to school.

Tuttie(my mom) has bronchitis and needs to get better before she can be with Maggie. Last night, we had a delicous dinner contributed by one of the secretaries at Richards School, the best place on earth.

I will ask during our clinic appointment tomorrow when they plan to study her leg next to see the results of the radiation.

Thanks for your love and concern, everyone.
I am going to try and update one of the pictures today. Wish me luck.

Maggie and Cindy

wendsday,February 26th 6:58PM CST

This is Maggie typing the message today with some help from Cindy. I had my 19th radiation treatment today. All the radiation specialists are very nice to me. I take my favorite stuffed animal with me every day to radiation therapy. His name is Bunny Bunny. My mom wouldn't let me go to school today because my blood counts were too low. But she said that depending on how much sleep I get tonight and how I feel in the morning will decide wheather I will go to school tomorow or not. I know that it's not her fault that I couldn't go today. I love looking at all the messages from my friends and family in the guest book. We will try to get more pictures in the photo album soon. My Uncle Phil is beating me really bad at our everlasting game of monopoly. He has some $1300 dollars and I have to have one of my propertys morgataged. I will go in for my next chemo on march 6th. It will be the 5 day chemo because I can't have the 2 day during radiation.

Thanks bunches, Maggie and cindy

Thursday, February 13, 2003 1:15 PM CST

WOW!!!!!!! Look at all of the new messages in Maggie's guestbook. Thanks to everyone for their support. Maggie glows with pride when she talks about her web page.

We were admitted to Children's on Wednesday morning for the 5 day run of VP-16 and Ifosfamide. Some mild nausea this morning, but she gets a boat load of anti-nausea medications to help with this. She slept really well last night. This morning Maggie helped deliver some Valentine's Day packets to the patients on the HOT unit that were sent by an organization to the kids. There is a Valentine's Day cookie party tomorrow morning that she is looking forward to. This afternoon she is down in the school room, using the computers. She has her Radiation Therapy at 2:45.

I finally got some pictures posted on the web site. The one with Maggie and Tigger shows what a patient cat he is.

Maggie and Cindy

Monday, February 10, 2003 7:57 PM CST

Maggie was to be admitted today for her Chemo at Children's,
but her Neutophil count was too low. They feel it will be back up by Wednesday, so we will try again. It is on its way back up after the last chemo, and is probably lower, also due to the radiation.

We had lab at 9:30, Clinic at 11:30, and radiation at 2:45. So we went window shopping at Mayfair Mall after clinic and before radiation.

On Friday, she was unable to have her radiation because the machine broke after we got there. They will add that treatment to the end of her treatments.

Betsy came over and met us for breakfast between clinic and lab, and both she and Uncle Phil came over to visit tonight.

She is going to school tomorrow. We have a 8:30 clinic appointment on Wednesday.

Cold with a dusting of snow today here. It's now 8pm and Mags and I are heading off to bed. I'm leaving the suitcases packed in the living room until we go back to the hospital.

Thanks for the wishes and support. Please sign Maggies guestbook and send her a message.

Thanks,
Maggie and Cindy

Thursday, February 6, 2003 2:13 PM CST

As of today, Maggie has had 6 of her 31 radiation therapy treatments. The technologists at Froedert who run the room she has her treatments in are wonderful to her, making sure that she isn't scared or uncomfortable. Yesterday and today, as we will tomorrow, our appointment has been at 7:30 in the morning. Mags is all business once the treatment is over, wanting to get to school. Starting next week, all of the treatments will be at 2:45 pm so that we will just leave school early in the afternoon.

On Monday, Maggie will be admitted to Children's for her next round of chemotherapy. This is the 5 to 6 day treatment. There is a tunnel connecting Children's to Froedert, so they will take her over there for her radiation therapy.

Maggie seems a little more tired since radiation began, but we have also been having some of those gray Wisconsin winter days. Today is cold but sunny.

We went out for dinner on Tuesday for Tuttie's birthday. Mags especially liked the warm brownie dessert.

We continue to be touched by all of the caring and concern shown to our family during this fight against Ewings. We appreciate our friends and family so much.

Thanks again,
Maggie and Cindy

Wednesday, January 29, 2003 at 01:47 PM (CST)

Had radiation therapy simulation this morning.This is where Mags gets in the mold that they made last week,they compare that with the Xrays and MRIS and the CT scan, and they finalilze the settings for the machine that will give her the radiation. It took about half an hour, and then Maggie wanted to go to school because they are "opening batteries in science today."

The radiation oncologist, Dr. Murray, told me today that there will be 31 sessions instead of the 30 originally planned. What's one more trip to Wauwatosa?

Tomorrow we have 7:45 radiation therapy at Froedert, followed by labs and clinic at Children's.

Maggie had a 4th grade orchestra concert last evening. She plays the cello. Betsy, Tuttie, Chris and I were there. (Phil had a continuing ed meeting.)

Maggie continues to have great spirits. She knows she is in denial about alot of this, and says, "I don't like to think about it". A very healthy 9 year old response. She is very aware of how much people care about her and are pulling for her.

Thanks for the prayers, love and support. I dont' know how we'd do it without them.

Maggie and Cindy

Thursday, January 23, 2003 at 02:04 PM (CST)

We came home from the hospital on Wednesday afternoon. Maggie did pretty well with this course (the short course) of chemo. "I only threw up once." She is one tough cookie. Today she went to school, the best place on earth. It is very cold here today, with wind chills at -30. Just a typical Wisconsin winter.

Tonight we are all going out to celebrate Uncle Phil's BIG BIRTHDAY. (I won't say the year, but I bet you can guess.) Maggie loves to be busy and she made a very special gift for him in the hospital with the Child Life Specialist.

Labs on Monday and Weds we have the last simualtion for her radiation therapy. She starts radiation therapy on Thursday, a week from today.

I'm busy reading my photoshop for dummies book, so I can get some good pictures posted.

Both Mags and I can feel all the support, love and prayers. We are very lucky to have such great friends and family.

Maggie and Cindy

Monday, January 20, 2003 at 07:20 PM (CST)

Admitted today for Chemo. Blood counts were good. Maggie is in good spirits, as she hopes to only miss one day of school this week. We will see after she gets home how she feels.

Chris, Maggie and I met with the Radiation Oncology team at Froerdert Hospital today. They are physically connected to Children's and they do all of the radiation therapy for Children's Hospital. The most recent scans show that there are still changes present in the fibula that need radiation treatment. They made the mold{form} that will hold her legs still during the treatments. Her radiation therapy will start on January 30th and she will have treatments on monday through friday of every week for a total of 30 treatments, ending on March 12th. Mags is mostly very accepting of the things she know will help her to get better.Her concern is in missing school for the treatments, but they were able to schedule most of them for late in the afternoon (2:45) or early morning(7:30) so she won't miss as much school.

Mags is thrilled with 205 hits to her site. Thanks for everyone's support.

Love, Maggie and Cindy

Monday, January 13, 2003 at 01:37 PM (CST)

Maggie was scheduled to be admitted to for chemo today, but her ANC (a number that takes into account not only her white cells, but what types of white cells they are) was too low. It has only been two and a half weeks since her last chemo, and they felt she needed the full three weeks to recover.

Her hemoglobin has recovered since the last chemo, so no transfusion for now.

They gave Maggie and I the option of coming back on Thursday for admission or next Monday. She doesn't have school next Monday, and we would have to come back for clinic that day any way, so we opted to wait the week.

Her echo went smoothly, no results on that yet. The MRI is unchanged from the one right before Christmas. The nurse practioner had a call in to the orthopedic oncologist to have him review the film.

So, a free week!!! Mags is thrilled because there is a party in school on Weds. and Thurs. is Pizza Hut Fun Lunch. These are very important when you are nine. I dropped her at school on the way home from the hospital. She got to eat a nutritious McDonald's lunch in the car.

Keep up those prayers and good thoughts.
Thanks
Maggie and Cindy

Thursday, January 09, 2003 at 01:55 PM (CST)

MRI went smoothly, as ususal. They are so good to Mags at Children's and she watched the movie Mousehunt during the scan.

White count is better, so she went back to school at 12:30. It is hard for her to stay home. She really likes school. Her teacher dropped off her homework last night, so she is fairly caught up.

Admit for chemo and the echo on Monday if her platelet count is high enough.

Maggie thinks her own web page is the coolest, and continues to love the supportive messages.

Thanks, everyone.

Maggie and Cindy

Monday, January 06, 2003 at 07:39 PM (CST)

Maggie had a clinic visit today and labwork.

Her white count was too low for her to go to school this afternoon, which made her sad. Betsy came over to visit, which helped alot. They watched a video together and beaded some bracelets.

She will have her repeat MRI on Thursday morning, when she will have her next lab work done.

She will be admitted on Monday, January 13th for her short chemo admisssion and a routine echocardiogram. This is done routinely throughout the protocol, as some of her chemo can be cardiotoxic.

Maggie enjoys checking her website guestbook to see who has visited. Thanks for all the supportive messages.

Maggie and Cindy

Monday, January 06, 2003 at 07:39 PM (CST)

Maggie had a clinic visit today and labwork.

Her white count was too low for her to go to school this afternoon, which made her sad. Betsy came over to visit, which helped alot. They watched a video together and beaded some bracelets.

She will have her repeat MRI on Thursday morning, when she will have her next lab work done.

She will be admitted on Monday, January 13th for her short chemo admisssion and a routine echocardiogram. This is done routinely throughout the protocol, as some of her chemo can be cardiotoxic.

Maggie enjoys checking her website guestbook to see who has visited. Thanks for all the supportive messages.

Maggie and Cindy

Tuesday, December 31, 2002 at 08:13 PM (CST)

Maggie came home from the hospital early this afternoon. She successfully completed her fourth chemo treatment. She had much less nausea and no vomiting with this treatment, unlike the other time she had this combination of medications. On her odd numbered treatments, she gets vincristine, doxorubicin and cyclophosphamide. These treatments are 2 to 3 day hospitializations. On the even numbered treatments, she receives VP-16 and ifosfamide. These treatments are 5 to 6 days long. She recieves other medications for nausea and some of the other side effects of the chemo, along with IV fluids, throughout these treatments.

Maggie was diagnosed with Ewing's sarcoma on October 17th of 2002. Her tumor is in and around her right fibula, the smaller, rear bone of the lower part of her leg.

The week before Christmas, she had a repeat bone scan, chest Xray and MRI of her lower right leg. It showed that the tumor is smaller, and responding to the chemo. She has not metastisized.

Maggie goes to Children's Hospital of Wisconsin twice a week for lab work, ususally on Monday and Thursday. She goes to the Oncology clinic once a week, usually on Mondays.

Maggie and I are very grateful for her to be able to have her own Web Page. She picked out the background and the ink color. Please sign her guest book, if you would like.

Sunday, December 29, 2002 at 02:32 PM (CST)

Hi. This page has been created by Maggie and her mom, so that we can keep our friends and family updated on Maggie while she is receiving treatment for her Ewings sarcoma.

Today, Mags is in the hosptial having her fourth chemo treatment. She is on day 4 of a 5 day treatment. She is tired and lonley, and wants to go home, but she knows she can't until the treatment is finished. On a positive note, for the first time, she has had no vomiting, and much less nausea than any of her previous treatments. She is a tough little girl. I will add current phot when we get home.

Thanks to everyone for all of their support and prayers,
Maggie and Cindy

Sunday, December 29, 2002 at 02:26 PM (CST)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

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