Journal History
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Tuesday, January 13, 2009 6:33 AM CST
Happy Birthday, Miss Madelyn!
Nine years ago, you entered this world and right from the start, you filled my heart the most amazing love! I have always told you and Allie that God truly blessed me with the most beautiful and amazing girls! He knew exactly what he was doing when he hand picked both of you to be my daughters! Yes, I am blessed and will thank God many times a day for both of you!
From your first breath, I knew you were perfect! Your journey in life hasn't been the easiest, but never once did you allow these "bumps in the road" define you or your heart. You have accepted these roads as a "detour" to gain as much as you can of the experience, and then get back on the right road, and apply these lessons to your life. Amazing lessons from a child who is so much wiser than her true age. You embrace the innocence of your childhood, yet you possess so much wisdom, grace, and beauty- you leave me in awe! You have taught me so much about living and about life! I hope you always continue to embrace these gifts you have- and realize the how profoundly you touch the lives of people around you! Your bright smile, your deep belly laughter, your sweet voice, your funny sense of humor, your wisdom, your faith, your innocence, your happiness, your giving heart, your serious heart to heart talks with me, your acceptance to your past, your positive nature to live life to the fullest, and to hear all of your dreams for your future....all of these make you so special.... Keep sprinkling the Madelyn love around! And keep reaching for the stars, girl!
I love you, Miss Madelyn! Happy 9th Birthday! I hope your day is filled with the most incredible love, laughter, and lots of happiness!!
I love you with all my heart and soul!!
Mom
Monday, September 1, 2008 6:44 AM CDT
8 YEARS!!!
8 years of being cancer free!! My dear, sweet, precious, beautiful, and loving Madelyn!! You are such a gift to us, Madelyn! Thank you for touching our lives so deeply- and showing us what living is all about! God truly blessed our family with such amazing daughters! You and Allie are such beautiful girls! (Inside and out! Wishing you the best as you start your first day of third grade tomorrow! You will LOVE being a third grader! ENJOY!! Congratulations on the 8 years of being cancer free, Miss Madelyn!!! We love you so very much!! Sending you the biggest hugs and kisses!!!
We love you!!
Mom and Dad
Friday, May 9, 2008 4:40 AM CDT
Happy May 9th!!
I hope y'all are having a wonderful day!! Sorry for the lack of updates. Things are really going great here. Madelyn is doing good! It's been 8 years ago today- Yes, eight years since she was diagnosed with neuroblastoma! It is a day I know I will never forget. The painful memories of the day are tucked neatly away in a place I just don't want to go to "visit." Instead, this day is a day to reflect of all the "gifts" we have received along this journey. We have met some very amazing individuals and families who have inspired, encouraged, and supported us. Many of whom are in the midst of their own battles. The friendships, the love, the prayers, the support....we will cherish it all! So to all of you, THANK YOU! Thank you for sharing this journey with us. We are so blessed!!
With Love,
Connie
Sunday, January 13, 2008 6:16 AM CST
Happy Birthday Miss Madelyn!
8 years old today! WOW!! You are such an amazing little girl! You have brought so much happiness and love into our lives!! You have this special gift of sharing all the "extras" with us and everyone around you. You bring the extra laughs, the extra love, the extra excitement, the extra smiles, the extra fun, and the extra joy- just when people need it the most. Thank you!! Again, Happy Birthday, Miss Madelyn!! Enjoy your special day!!!
Brief Birthday Update
Madelyn had her "girlfriend" party on Friday. They went to an art place and painted different art projects. Madelyn painted a birthday plate and had all of her friends sign it. I can't wait to see the final project! It was such a nice party- plus Madelyn has such great friends!!
Cute story- it has become a tradition in our house when it's your birthday, you get to pick out whatever type of cake and frosting you want. (Box or Bakery) So, Madelyn decided she wanted to order a cake. She wanted a marble cake with white frosting. On the white frosting she wanted colorful flowers everywhere- covering up the entire cake- so you couldn't even see the white frosting. (smile) And she wanted the flowers to be all different bright colors-Then, she wanted it to say, "It's Madelyn's 8th Birthday." I asked her if she wanted the traditional Happy 8th Birthday Madelyn- or Happy Birthday Madelyn- only to hear NO. She wanted it to simply say, "It's Madelyn's 8th Birthday." That's exactly what I ordered. Thankfully we know Ana at the bakery and she has learned from past Madelyn cakes, to not even bat an eye. Ana actually told me she looks forward to seeing what Madelyn orders each year. (If you remember a few years ago, Madelyn wanted "It's my birthday.") We picked up the cake yesterday and it's exactly what Madelyn wanted! Like I said before, Madelyn brings us the extras!!
For her birthday today, we have the MN Tree of Hope ceremony to attend. It's always such a beautiful ceremony. Then, after the ceremony, Angel Sheryl, her Mother, and her sister are coming over to our house for cake and ice cream! The girls are so excited!!! They are going to put on a short play for them. Madelyn made Angel Sheryl a really sweet gift yesterday!
Madelyn just woke up so I need to sign off. Have a great day!!
With Love,
Connie
Saturday, December 22, 2007 9:13 AM CST
Allie wrote the following message:
Hi Everyone!!
Madelyn is doing wonderful!! Yesterday her and her friend Taylor went outside and built three HUGE snowmen. Allie and her friend Dallas built a fort. Afterward all of them went sledding and had a snowball fight. They all watched Hairspray the Musical. They all loved it.
Madelyn is 7 years old. Her birthday is January thirteenth. She will be 8 years old. She's growing up too fast. In December she got student of the month. She's in second grade. She has lots of friend. Madelyn is a very crafty person. She spends most of her day doing crafts. One of her projects are glue bookmarks. They are very messy.
Allie is in seventh grade. She plays the flute. She loves playing the flute. She also likes hanging out with her friends. She spends some time on the computer. Allie is 12 years old. Next year she will be a teenager. She is growing up too fast. She is a very bright student. She favorite class is Reading.
Bob and Connie are doing wonderful. They love the girls very much. Kelly the dog is also doing great. Madelyn likes to dress her up in baby doll clothes. Then when Kelly is dressed she gets pushed around in a baby stroller.
Happy Holidays!!
From The Powell's
By:Allie
Saturday, September 1, 2007 6:29 AM CDT
SEVEN YEARS OF BEING CANCER FREE TODAY!!
Miss Madelyn,
You have taught me so many lessons in life- about strength, compassion, love, grace, honor, laughter, and pride in everything you do. You have touched so many lives and you continue to inspire the people around you. I am so proud of you! God has truly blessed me! Enjoy your special day!
I love you!
Mom
Wednesday, May 9, 2007 6:23 AM CDT
Good Morning! Happy May to everyone! Today is the 7 yr anniversary of Madelyn's diagnosis. WOW! Thinking back to that day brings back so many memories. All I can say is we are truly blessed. Madelyn is doing awesome! She had a wonderful check up in March!! And she is looking forward to summer!
Three years ago, I was invited to give a speech at a local Relay for Life ceremony. I realized I have never shared that on this site, so I find it appropriate to add it today. Wishing all of you a beautiful day!! Connie
Thank you to the Relay for Life Committee for inviting me to speak at this year’s ceremony. I feel honored to share Madelyn’s story with all of you. Looking around here tonight, I see there are many personal cancer stories of triumph and tragedy. I believe by sharing your stories, you show the world that people with cancer are not statistics - but rather people with hope, courage, inspiration, passion, and purpose. Madelyn’s experience has taught my husband, Bob, my daughter, Allie and I some of the most precious lessons in life.
Madelyn was born Jan 13, 00, at which time we thought she was a very healthy perfect 6lb 14oz baby. Unknown at the time, Madelyn was born with cancer. Her symptoms began to appear when she was about seven days old, when she started vomiting. Thinking it was it was the formula, we tried several different ones in hopes to find the right one. When she was one month old, her Pediatrician diagnosed her with a mild digestive problem and colic....and switched her formula again. Her symptoms persisted and at her two month appt, I explained to him that she was throwing up almost five times a day, so he prescribed her some tummy relaxant medication. At that time, we also started noticing she was not your normal baby. When you held her, she did not like any movement. If you tried to rock her, she would cry and cry. About that time, my intuition told me she was very sick, but never in a million years did I suspect cancer. I took her back when she was three months old, only to find she had an ear infection. Two weeks later, she still had the ear infection, yet I knew something else was wrong with her. I remember looking at her, and it was as if her eyes were pleading to me, “Mommy, Help me! I am very sick.” And that is the day we took her back in and demanded blood tests. The blood tests revealed her liver enzymes were elevated and the x-rays showed her liver was enlarged. She was referred to see a liver specialist the following week.
May 9th, 2000. A day we will never forget. It was the day prior to the appointment with the liver specialist; I had to take Madelyn in for an ultrasound. I was supposed to take the scans along with us to the appointment. I scheduled an appointment with her doctor, immediately following her ultrasound. (Madelyn was having these bug-like spots on her skin that would swell and then disappear all over her neck, face and tummy. We later found out it was break through cancer.) When he walked in the office, I started telling him about the spots......and I could tell by the look on his face, something was wrong. I stopped in mid sentence and said, "There is something very wrong with her." Tears filled his eyes......and that's when he painfully told me, “Madelyn is very sick. She has cancer.” As I cradled Madelyn in my arms, I thought maybe I didn’t hear him correctly, but the look in his eyes, reassured me, he said what I heard. He did not have to repeat those awful words again. I know I’ll never be able to accurately describe the feeling I felt when I heard my precious little15 week old baby had cancer. I remember watching his mouth move, but I did not comprehend a word he spoke. So many thoughts consumed my mind. How can a baby so little have cancer? How much pain is she going to endure to get rid of the cancer? Will she be strong enough to fight cancer? Is my baby going to die? And that is the beginning of her cancer journey.
We were immediately sent to Children’s Hospital in Minneapolis where we were interviewed by her Oncologist. Based on her tumor and symptoms, he suspected she had Neuroblastoma. Neuroblastoma is cancer of the sympathetic nervous system. Like most cancers, researchers are unable to determine what causes it. Tests later confirmed her cancer and her diagnosis was Stage IV, Neuroblastoma. Madelyn weighed only 13 lbs and her little body was filled with cancer. Her primary tumor, which was the size of a baseball, was located on top of her adrenal gland. The cancer had metastasized to her liver, bone marrow, the soft tissues in her head and she had break through cancer on her skin. Her liver alone, which was 99% cancer, was enlarged three times the normal size......so where ever you touched on her tummy, you were touching liver. Also, her cancer caused her adrenaline to be so high that her normal day to day functioning level was like an adult at their most terrified moment in life. The timing of her diagnosis was crucial to her survival, for her doctor told us that had it not been found, Madelyn probably would have died within a month. However, a few things were in our favor, researchers have found infants under the age of one, with favorable histology and non-amplification of the N-Myc oncogene, had a high likelihood of a long-term, disease-free survival. Madelyn went through surgery to remove the tumor. A week after her surgery, she started her chemotherapy treatments. She went through four rounds of aggressive inpatient chemotherapy treatments and did remarkably well through each round. Four months later, our prayers were answered when Madelyn was declared in remission.
Although she was declared in remission, she did not magically turn into a healthy child. Madelyn refused to put anything in her mouth, to include food. She did not like being touched nor did she like touching things. For instance, if I would put her in a sandbox to play, and the only thing she did was cry when she touched the sand. Or if I sat her down in the grass, she would try to lift her feet off the ground. She could not handle the grass touching her. Even crawling on carpet, she had to wear socks. She was referred to occupation therapy and went though months of tactile/sensory therapy. Eventually, she was able to eat and touch things. Her throwing up daily also disappeared when she was about 18 months old. However, last year, she started throwing up again. But this time, she started hiding the fact she was doing it. She was referred to a psychiatrist for therapy. And for now, that behavior has stopped. Her oncologist believes Madelyn shows signs of (PTSD) Post Traumatic Stress Disorder. He said she was too young actually remember the entire ordeal, however, the mind is a powerful thing and she may have suppressed a lot of events.
Looking at Madelyn today, you see a beautiful healthy four year old little girl. In Sept, she will reach her fourth year of being a cancer survivor. I realize this journey started with Madelyn going through a lot of pain and suffering. It still is emotionally painful to think back on those days when she was so sick. However, we put our trust in God and we feel blessed to be where we are today. Our lives have been enriched by so many family members, friends, experiences and lessons in life. I truly feel blessed. We will always live with the fear of relapse, secondary cancer or long term side effects of having cancer, but we hope, pray and continue to fight for a cure.
I commend each and every one of you who has sacrificed and suffered - but never given up. I hope we all continue to educate others about cancer and continue to fight for a cure. Your stories and strength help create awareness. And this will help advance research, treatment and hope. You inspire the world to do just that. I love this event because it is such a wonderful metaphor for life. We start walking on this journey of life, we walk the same path as others, but never just the same footsteps. We light the way for others, so they are not walking in the darkness, and they will never feel alone. We pass lights that remind us of bright spots in our lives. And when one of those lights goes out, we know it is somehow still with us because we feel the breeze that blew it out and carry the light in our heart. Thank you again for inviting me to share Madelyn’s story. May God bless you.
Wednesday, February 14, 2007 2:18 PM CST
Happy Valentine's Day!!
I hope y'all are doing great!! I thought I would log in and type a brief update. As you probably noticed, I changed Madelyn's main page photo. I also updated her photo page too!
Madelyn is doing really good!! She is in first grade, at her new school and is loving every single second of it. What a huge change since last year was so rough on her. I think I noticed the biggest change in her emotions once school got out. She started smiling and started enjoying life! Right before school started, she approached me about not telling her new teacher about the problems she experienced last year. She didn't want her teacher to know about her cancer. And she didn't want the kids in her class to know about it either. She said she didn't want to be different from the other kids and she didn't want them to think she was the sick kid. WOW!! I was so proud of her to be able to articulate her concerns to me. I had tears in my eyes! So, I made a deal with her not to have the "talk" with her teacher as long as we didn't have problems with her throwing up, and her anxiety/depression issues. She reassured me they would not be a problem. She was right! She really is thriving and excelling!! She has a great group of friends and a truly wonderful teacher, who she really respects. We are so extremely proud of her!! She is a totally different child to the one we dealt with last year!! What an amazing little girl! We have kept her busy over the winter with different activities. She was in gymnastics in the fall and in tennis during the winter. Another tennis class will be starting up in the next couple of weeks. Medically, she has her annual check up on Mar 26th at CentraCare, in St. Cloud. Children's has a Dr. that comes to CentraCare once a month, so I decided to finally switch her check ups there. Madelyn knows all of the staff there so it just makes sense. She is happy with the change.
Allie is doing great too! She is playing the flute in band. She had her first concert in Jan! I was so impressed! She really loves playing the flute. She is still in Girl Scouts too. Allie also is doing great in school as well! It's amazing to see the changes in her report card since she started at this new school! She had mostly A's!!! The lowest grade she received so far was a B- for handwriting! Last year, she was mostly a C student! WOW!! We are so proud of her!
We are going to Disney World in a few weeks!! The girls are SO extremely excited!! Well, I guess the excitement applies to all of us!! :) Two years ago, we went to Disneyland in CA. We only spent 3 days there. After a full day at the parks, we would get into our hotel room, and I think the girls were asleep before their heads even hit the pillows. We will be at DisneyWorld for 7 days so I am sure it will be a repeat of exhaustion, except this time for a week. lol! The girls are thrill seekers and love to go on the big rides. They talk non-stop of all the rides we will be going on. Especially, the Tower of Terror! I have a feeling we will be doing that ride mutiple times. That was their favorite ride in California. I will add new photos when we get back!!
Finally, thank you to all of you for your love, support, friendship, and prayers. As I have said before, you all are leaving permanent footprints on Madelyn's heart and touching us in ways that are beyond being able to express enough how eternally grateful we are. We are blessed to have you in our lives!! God bless you all!! Thank you!!!
Have a wonderful day!!!
With Much Love,
Connie
Sunday, December 24, 2006 8:47 AM CST
First, Madelyn's very first message to all of you on this site:
merry christmas everyone! i love 1st grade. i can't wait for santa. i love you all! bye madelyn
Wishing you all a very Merry Christmas and a Happy New Year!!! May your holiday season be filled with wonderful times, love, peace and happiness. And may it continue throughout the upcoming year. Please remember those that are suffering, in mind, body or spirit, that they may receive the true miracle of Christmas. Also, please pray for all of the Angel Parents that are going to celebrate Christmas without one of their children this year. It breaks my heart, and I hope that they can hold on to some happy memories to get them through.
A very special thank you to all of you.....for all your love, support, friendship and prayers. !! We are truly blessed to have you in our lives! May God continue to bless you and be with you always. Thank you for touching our lives! Happy Holidays!!
Connie
Sunday, June 18, 2006 6:06 AM CDT
Good Morning!
I hope everyone is doing great! It's been a long time since my last entry. We all have been very busy! Here's an update. We moved into our new house last December. During the winter, we unpacked, decorated, and got the inside set up. This spring, my brother poured us a beautiful patio and sidewalk in the back. I also did a lot of landscaping around the house. Right now, we are trying to establish a lawn. The front yard came in great. The back is another story. I know it will take time! Plus, we have no neighbors around us, just an open field. Hopefully, the lots will sell and new houses will be built. I am sure that will help cut down on the weeds, dust, and wind!
The girls are doing good. Both of them are playing soccer. (Bob is coaching both of their teams.) This is Allie's fifth year of playing soccer. It's helpful for her social life that seven of her best friends are on her team. They really have a great team....a lot of very talented players! This is Madelyn's first year of playing soccer. She is having a blast! For her age, they have a co-ed team of 6-7 yr olds. Initially, she was a little sad because there is only one other girl on her team. Now, she is fine with it. She is keeping up with the boys! They also have a great team! Both of the girls teams are undefeated. So, we spend four nights a week on the soccer field. It's a lot of fun!
Madelyn is doing good. She is still seeing her Dr. once a month. We have noticed a lot of her anxiety's originate from new social situations. She has learned a lot of coping techniques to deal with those types of situations. I am very thankful Madelyn tells us when she feels anxious or is having a difficult day. She does get frustrated by feeling this way and informs us she is using her coping techniques to deal with it. Both of the girls will be starting a new school in the fall. About two weeks before school starts, she will start seeing her Dr. every two weeks, just to help her through the transition period.
And finally, thank you to all of you for your love, support, and prayers. It has and will continue to be so very touching to our family; the outpouring of love, compassion, and encouragement that each and every one of you have expressed. You are leaving permanent footprints on Madelyn's heart (and ours) and touching us in ways that are beyond being able to express enough how eternally grateful we are. God has truly blessed us!!
With love,
Connie
Wednesday, February 1, 2006 5:40 AM CST
Good Morning!
I first want to thank each of you for making Madelyn's 6th birthday so special! She was having a very tough time emotionally and you all brightened her day. She has been seeing a psychologist since Dec. She had a psych eval a few days after her birthday and they diagnosed her with anxiety and depression. Since it is early into her therapy sessions, we are trying to help her without medication at this time. She hasn't thrown up or attempted to throw up in almost a month. Since she has been on her acid reflux medications, it's almost impossible for her to make herself throw up. Right now, therapy seems to be going well and she really enjoys going. She has been working hard at all the coping techniques she is learning. So, we have seen improvements, which is wonderful. This past Saturday, my Grandfather passed away. It has been tough for her but thankfully we had an appt on Monday. She was able to talk with her Dr. about the sadness and emotions she was feeling, for the loss of her Great Grandfather. Bob and I were in Mexico when he passed away and we were not there when she was told. When we returned Sunday evening and were told of his death, I immediately thought of how Madelyn was going to deal with this. The next couple of days will be very tough with the wake and the funeral, but I will hold her hand through it all. Please continue to keep Madelyn in your prayers. (((Thank you!)))
I wrote a journal entry on Thanksgiving Day a year and a half ago about my Grandfather. I copied and pasted it below. I am dedicating this entry to my Grandfather, Carlyle Knaus. I am very blessed to have had a Grandfather, friend, role model...ect as my Grandfather. He was the most gentle and loving man around. He had three great loves....God, his wife and his family. I would see him about twice a week, and he always told me how blessed he was in life to have lived the life he did. He face would light up when he talked about his wife, his children and his grandchildren. He loved us all! At 88 years old, he died a very happy and blessed man. He did have dementia but he never lost his memory. He actually died of two massive heart attacks. He did tell me before that when he dies he wants to go fast, without pain, with God standing next to him, along with his family. And that is exactly how he died when he was called home. Unfortunately, I wasn't there when he died. I did see him right before I left for my vacation. We hugged and kissed goodbye, as we always did. It is that memory, of our goodbye, I will always cherish. Our entire family is hurting but we also know how incredibly blessed we are. His spirit will remain in each of us for he taught us so much about family, about living, about loving, and about God.
Grandpa, thank you for taking the time to tell me about the "good old days" and for sharing your life and love with me. YOU WILL BE GREATLY MISSED!! We will see you again.
With Love,
Connie
Thursday, November 25, 2004 12:01 AM CST
I want to share the following with everyone. First, let me tell you a little bit about my Grandfather. He is 87 yrs old and one of the most incredible men I have met. He has always been such an inspiration to our family. He served in WWII and is the proudest Marine I know. He has always been the epitome of health! So strong physically and mentally. A few weeks after Madelyn was diagnosed with cancer, he was diagnosed with prostate cancer. He had surgery and still is getting chemo shots and is keeping it under control. However, over the past year, he has started showing signs of dementia. He has been getting progressively worse. He has been more confused and more forgetful, very normal symptoms of this disease. He is fully aware of his condition and realizes it will get worse. Anyway, this past week, he finally had his first appointment to evaluate his memory. After his appointment, I had the chance to sit with him while he was waiting for another appointment. And it is one part of that talk that I wanted to share with all. It was such a treat sitting there listening to him talk how blessed he is with his life, his health, his wife, his kids, his grandchildren and on...... and just how happy he is to be alive for the "moment." He said, "You never know if you are going to be alive tomorrow so I am thankful for everyday I am able to open my eyes and know that I am alive. I don't know if tomorrow I will be so confused that I don't know how thankful I am for this blessing so I tell everyone I can, how blessed I am for the life I have lived." Tears started running down my face.......What a Grandfather I have!! I feel I am the blessed one to have him in my life.
Friday, January 13, 2006 5:17 AM CST
Happy 6th Birthday, Miss Madelyn!!
Your special day is finally here!! Madelyn, I wanted to list a few things that I love about you!
I love:
~Your love. I love the way you love me and everyone around you.
~Your heart. You have the most gentle and giving heart.
~Your huge bear hugs. You give the best big bear hugs in the world!
~Your laugh. I love your deep belly laughs that go on and on.
~Your eyes. You have the most beautiful eyes that speak to me without you even saying a word.
~Your spirit. I have said this since you were born....
~Your braveness in life.
~Your smile. You could light up a dark room with your smile!
~Your pinky love.
~Your compassion for others
~Your voice.
~Your innocence.
~Your determination.
~Your funniness. You are one of the funniest people I know! You know how to entertain and keep people laughing.
~Your happiness.
~Your smell.
~Your twinkle in your eyes.
~YOU!
Madelyn, I love everything about you. You are such a true blessing in my life. Every day, I thank God for you. And I thank you for being such an amazing little girl who has taught me more about life and love than anyone else. I love you, Miss Madelyn!!! Enjoy every minute of your special day. Soak up all the love you feel and savor it! I hope your day is filled with SO much love, laughter and lots of happiness! As I tell you and Allie every night, "God truly blessed me with the most loving, special and beautiful daughters!"
Happy Birthday!!
With all my love,
Mom
Tuesday, November 1, 2005 6:02 PM CST
We just got back from a VERY long day at Children's in Minneapolis and then at the Gastroentrologist office in St. Paul. We have been up since 4:30am. Madelyn had an ultrasound of her gallballer and also an upper/lower GI with a bowel follow through. All the tests came back good. They did see she has acid reflux......as soon as she drank water, it came back her tube. (It was very amazing to watch the water go down into her stomach, and come right back up.) The tests went a lot faster than we were told. (They said five hours.....and she was done after almost two hours.) We went back to talk to her Oncologist and Nurse Manager. They went over all the tests from her tests last week. (Her neuroblastoma cancer urine screen came back normal as well as all of her other tests. She had a CT scan, x-rays, blood and other tests.) After leaving the hospital, we went to the Mall of America to spend a few hours before her next appt. (She also was starving! She picked Bubba Gumps to fill her tummy back up!) We thenmet her Gastroentrologist. They are VERY thorough! It was over an hour appt. They went through her history, all her results, examined her....and even had two doctors in the room, going over the plan for her. This is the plan: if Madelyn stomach feels better with less nausea, we will continue to keep her on Prevacid. (She just started it last Wed, so it's still to early to see the results. She still is complaining of her tummy hurts and she needs to throw up.) If she does not see any improvement in one week, they want to scope her and biopsy the lining of her stomach. (She will be under for this.) Hopefully, we will see improvements!! (Please say some special prayers this medicine helps her.) Also, her Oncologist recommended that we seek therapy for her anxiety issues. (Which we already had planned on doing.) So, that is the update.
Thank you for all your prayers, support and love. We truly appreciate them!!
I will update next week.
With Love,
Connie
Saturday, October 15, 2005 6:20 AM CDT
Welcome to Miss Madelyn's site!
Sorry it has been so long since my last update! I hope y'all are doing great! We are all doing fine here. Staying extremely busy....but that's normal. I thought I would write a little update.
Madelyn started Kindergarten on Sept. 1st. (The same day we celebrated her FIFTH year of being cancer free!! WOOHOOOO!!!) She is loving school and she is really doing great! Her and another little girl are the top readers in her class. They completed a 15 book series last week! She also loves math! She constantly wants us to challenge her with addition and subtraction problems. I am very proud of her.
We had to take Madelyn back into the Dr a few weeks ago. She started throwing up in school......three days in a row! On a Thursday, a Friday and on a Monday. (She was perfectly fine as soon as we got her home and was great during the weekend!) Let me say, she is dealing with a lot of different issues!!! First, the x-ray revealed she was quite constipated. (Which we were shocked to hear since she goes every day.) They also think she has reflux problems....and she is on the border line of obese! YES! You read that right! She has gained 12 pounds in six months! YIKES! (I knew she was putting on weight......but didn't realize she gained that much.) Last Sept, she was at the 25roup..and now she is above 90roup. She weighed 55 lbs. We are not putting her on a diet.....just only monitoring the portion sizes and watching what snacks she has. We did found out she was getting four cartons of milk everyday at school....we cut that back to one. Well, she is still complaining her tummy hurts so badly.....even after cleaning her out thoroughly! Since the Dr. visit, she has been back to the school's nurses' office many times. After talking to a few people, we think part of the problem is a learned behavior. Last Friday, she was sent home again. So, last weekend, we told her if she wasn't really sick, she couldn't go to the nurses' office. This past week, she would tell the teachers her tummy hurt, but would instantly state she felt better when they wanted to send her to the nurses' office. (Her teacher told us she would mope around until a fun activity would start, and then suddenly she would feel better.) We had a parent teacher conference on Thursday. We all came up with a plan, so we are on the same sheet of music. We told her if she truly is sick, she can go to the nurses' office. If not, she cannot complain of her tummy hurting. And if she does, she will not be able to participate in the activities of the day. We told her all the teachers are aware of this. (Madelyn is very wise beyond her years and is a princess of manipulation. We went through this same type of behavior at daycare. When the control is taken away from her, she seems to thrive.) Well, she wasn't very happy when she was informed all of us got together and came up with a plan. Yesterday, she went to school and did GREAT! When she got home, she was telling us how proud she was of herself for not having a tummy ache all day long! I talked to her teacher last night and she said she noticed a difference in her behavior too. Let's hope this works!
UPDATE: October 18
Madelyn had two episodes of tummy pain yesterday and two today. Her school called me and told me she was bent over crying in pain. I picked her up from school and also took her to see her Dr. We think these episodes are actually panic attack....related to her PTSD. All of her symptoms are pointing to that. I witnessed one of them yesterday and they last approx. 30 minutes and then she is perfectly fine. We are putting her on medication and also getting a referral for her to see a Child Psychologist. Please keep Madelyn in your prayers. She really is having a tough time with dealing with all these issues happening to her. Thanks!!!
Allie is doing wonderful as well! She is loving school! She is running for school secretary again. She won her class, her grade and now she competes at the school level. She made it this far last year and lost to an older kid. She typed out her speech and has been practicing it over and over. She will give her speech on Tuesday! Allie always seems to be so busy with all of her school activities, girl scouts, soccer and her friends. It's tough to keep up with her social calendar! >I know what you are thinking: Just wait until she is a teenager!< Yikes! giggle!
The Fourth Annual MN Tree of Hope is in it's planning stages again. We should be getting the flyers out in the mail in a few weeks. The ceremony is on Jan 8th, 2006 from 1-4pm, at the CentraCare Clinic in St. Cloud. The tree will be ready for display on Dec 1st, at the St. Cloud Hospital. (They have a big hospital lighting ceremony that night and have all a lot of different special trees on display.) The MN Tree of Hope is to honor children (from MN) who has or has had cancer. The tree is then decorated with gold ribbons bearing the names of the children, along with their pictures. You can also add written dedications to the child as well. It truly is a very beautiful and touching ceremony. (Email me if you want more information or want to add your child's name. It's all free!)
Well, I just looked at the time and I need to go. There was more I was going to update on, but it will have to wait.
Thank you for visiting Madelyn's website! And thank you all for your friendship, love and support!! We truly are blessed to have you in our lives. May God continue to bless you all!!! Have a wonderful day!
With Love,
Connie
Monday, September 19, 2005 6:48 AM CDT
Please pray for Stephanie and her family! They have decided to take Stephanie off the life support today at 3pm. She has fought so hard and is loved by so many. Please pray for a miracle!!! www.caringbridge.org/mn/brown_eyed_shorty.
UPDATE:
Stephanie passed away and is now at home with the Lord. Please keep her family and friends in your prayers. Thank you!
Friday, June 3, 2005 8:31 PM CDT
Hello Everyone!!
I am sorry it has been so long since my last update! I will try to piece an update on things that happened and upcoming events for the month of June.
First, Madelyn is doing great! She had her annual check up on April 15. All of her tests looked great! Next year, her oncologist wants to have an echo done on her, just to check her heart. It was such a wonderful visit seeing her oncologist again.
May 9th was her fifth year "anniversary" date of diagnosis. All day long, I caught myself looking at the clock, re-living the events of the day, as they unfolded hour by hour. The memories of that day still seem so fresh in my mind. And as painful as they are, I truly realize how blessed I am. I believe it was God's plan to lead me to this place where I could find love, peace and hope in Him. I know May 9th will always a very special day for me.
My Mom just celebrated her 60th birthday a couple weeks. We had a surprise birthday for her at her house. (She lives on Lake Vermillion......near Cook.) It was a wonderful party and she was so surprised! It was an off and on rainy weekend, but temperature wise, it was pretty nice.
Allie only has a few more days left of school. I am still in shock that she is going to be a 5th grader and Madelyn will start Kindergarten in the fall! The years have flown by! On Allie's birthday she said, "Mom, just think, in eight more years I will be graduating!" Yes, it's true, but I sure hope time goes by very slowly!
I am sure this summer will be no different than the past. We always seem to stay so busy. Allie already started soccer and has her first game next Monday. She is very excited. We are going to get them into tennis. They are very anxious for us to fill the pool! Once it gets a little warmer, we will get it all set up and running! Last year, it didn't warm up until after the 4th of July! I hope this year warms up a little earlier.
Tomorrow, we are going to Chad's graduation party. (Neighbor) He is like a brother to the girls. He is such a great kid and we are so proud of him. Congrat's Chad!! Wishing you the best always!!! Next weekend, our dear friends Tara and Darren are getting married. I am very excited for their wedding! I was so honored when Tara asked me to be a personal attendant. A very special congratulations to Tara and Darren! We love you both!!! At the end of the month, I will be a great aunt for a third time! David and Kari are due with a boy on Jun 20th! (Please say a prayer for them and the baby. During the ultrasound at 20 weeks, the Dr's thought they found a heart defect on the baby. When they went in for the follow-up ultrasound the heart was normal. PTL! But, I know they are still nervous.)
Prayer requests: Please say a prayer for all the children who are currently fighting cancer and for the families who have lost a child to the monster. Also, please say a special prayer for Jeff who is currently stationed in Iraq. We miss him dearly and we can't wait for him to return. Thank you!!
And thank you to all of you for your love and support! Angel Sheryl....the girls send their love!! Have a wonderful day and may God continue to bless you all!!
With Love,
Connie
Sunday, March 20, 2005 4:43 PM CST
Hello to all!!
Sorry it has been such along time since my last update! I will give you an update now!
January was a busy month. We had the MN Tree of Hope ceremony, which was such a beautiful ceremony! We had a little over a hundred people there, counting all the volunteers and staff. It truly was touching. Madelyn celebrated her fifth birthday. She was so excited to be five! We had a nice little party for her. Towards the end of the month, Bob and I went on our annual winter vacation. This year, we went a little farther south in Mexico and stayed at Riveria Maya. We went with our friends, Tim and Becky, who we met on vacation two years ago. While we were gone, the girls got sick with the stomach bug. (Poor things! Considering both of them had already had the same thing about three week prior to getting it the second time!) By the time we got home, they were feeling great.
February was a month of more colds, viruses and stomach bugs. Looking back on the month, I would have to describe is a sick month! Both Bob and I had to take a lot of sick days for the girls or for myself. Luckily, Bob managed to float through it all and not even get a sniffle. However, in March he wasn't so fortunate. And that takes us to March. We flew out to California on Mar 4th. We spent two incredible days at Disneyland!! The girls had the time of their lives!! (As we all did!) To see the magic, excitement and complete happiness in your children's eyes, has to be one of the greatest experiences of being a parent. Both of the girls were such troopers! We were on our feet for 12 hours on Saturday, with only a couple 15 minute breaks. Not once did they complain or even suggest they were tired. And within seconds of their heads hitting the pillow, they were fast asleep! (I am sure they were dreaming about all the encounters with the characters!) They collected autographs and were able to get 18 different ones! Kids have an "eye" for them! Our favorite ride for the family has to be Soaring Over California and the Tower of Terror. (Both of these rides were at the adjacent Disney park....called California Adventure.) Even Madelyn did the Tower of Terror, where they drop you like 13 floors in a make shift elevator. She LOVED it. There were only two rides Madelyn didn't ride, because she was too short. We really had a blast!!
On Sunday afternoon, we drove to Palm Springs to spend the next leg of our vacation with my Mom and Step Dad. It was so awesome spending time with them!! Being able to be part of their "winter" lives is very special in itself!! Bob was able to go golfing and us girls did what we do best......shopping! >big smile< However, Bob and the girls got sick during the week. (Allie and Madelyn's asthma flared up and could not stop coughing. When we got home on Saturday, they all went to the Dr, to find out they all had sinus infections. Poor things!) Even though they all were sick, they pressed on and wanted to enjoy the area. We did the Living Desert (Zoo) and the Tram. The Tram takes you up a mountain (8,000+) feet. The view was amazing!!! Oh, speaking of amazing....the weather!! It didn't rain a single drop and was in the 90's everyday!! We had planned on spending our last day in Hollywood, but since they didn't feel good, we decided against it. Instead, we went to the Santa Monica pier. The girls were able to splash and play in the ocean! They had so much fun they forgot they were sick. >>>Check Madelyn's photo page for new pictures.<<<
This past week, Madelyn had her Kindergarten physical. (She weighed 44 lbs and was 44" tall.) She had to get three shots. I didn't know if they would give them to her since she was still on medication for her sinus infection. They did give them to her. She cried when she found out she had to get them and even asked the nurse if she could take a break between each shot. Afterwards, she said, "Boy, I am glad I got them out of the way." lol!! Madelyn also had her Kindergarten screening. She breezed through that with flying colors. She is so ready for Kindergarten that I hope she doesn't get bored with it. (She started reading in January!) I know she will do great!! She was able to get into the all day class. (Around here, they have the lottery system for all day kindergarten. And thankfully, they picked her name!)
Madelyn has her Oncology appointment on Apr 15th, at Childrens. She actually is excited to go to this appt. I hope I will update her site before that but if not, I promise to update after her visit. I am sure they will say she is still doing great.
Please keep Stephanie in your prayers. Stephanie is a 19 year old beautiful young lady who just relapsed with AML. Stephanie had been in remission for a little over two years. I know every prayer will help her!!! Also, if you could keep all the kids battling cancer, their families, and for the families who have lost a child; close to your thoughts and prayers as well......I know it would mean a lot to them as well.
I do want to say a very special thank you to all of you for your prayers, your love, your support......and for all you do!! I hope each of you have a very Blessed and Happy Easter!!
With Love
Connie
Thursday, January 13, 2005 5:46 AM CST
Happy 5th Birthday Miss Madelyn!!!
Your 5th birthday is finally here! Enjoy all the love and affection that comes your way today, Madelyn. You deserve it! May your birthday make you feel as beautiful and special as you are to me. Wishing you a day filled with love, laughter and happiness! As I tell you and Allie every night, "God truly blessed me with the most loving, special and beautiful daughters!" Happy Birthday, Miss Madelyn!!
We Love You,
Mom, Dad and Allie
I have to share one cute birthday detail with you all. Madelyn normally does not eat cake. It's the one food we have identified that causes her to throw up. So, we had planned on getting a birthday pie. Well, Tuesday night, she told us she wanted a cake instead. She said she will have a very tiny itty bitty piece with lots of ice cream. We asked her what type of cake she wanted. She said it had to be a Bratz girl cake with the words, "It's My Birthday!" I asked her if she wanted it to say Happy Birthday, Madelyn? And she said, "It has to say, Happy 5th Birthday, Madelyn....and It's My Birthday! I told her okay! Thankfully, we know Anna at the bakery, so she didn't look at me funny with the request. She thought it was very precious too. She loves the girls and always makes them the most beautiful cakes. I can't wait to see how she incorporates, "It's My Birthday!" on the cake! >Big Smile!<
Before I close, I wanted to include this song.
Madelyn, I am so glad you are a child of mine!
Child of Mine
Gerry Goffin and Carole King
Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you've designed
Oh yes, sweet darling
So glad you are a child of mine
Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine
You don't need direction, you know which way to go
And I don't want to hold you back, I just want to watch you grow
You're the one who taught me you don't have to look behind
Oh yes, sweet darling
So glad you are a child of mine
Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine
Nobody's gonna kill your dreams
Or tell you how to live your life
There'll always be people to make it hard for a while
But you'll change their heads when they see you smile
The times you were born in may not have been the best
But you can make the times come better than the rest
I know you will be honest if you can't always be kind
Oh yes, sweet darling
So glad you are a child of mine
Child of mine, child of mine,
Oh yes, sweet darling
So glad you are a child of mine
Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine
Saturday, January 1, 2005 7:42 AM CST
Happy New Year!
January the first....a time of new beginnings, a time to say farewell to the past, and to old Father Time. It's a time to cherish our families and friends, to remember the loved ones who have passed away, to pray for the sick, to forgive others and make amends, and to consider the changes we want or need in our own lives. It is a new day to welcome with bright and expectant eyes which look to the future. The new year.....with new hopes, new dreams and new experiences. Wishing all of you a year filled with faith, love, laughter and lots of family, friends and fun.
Looking ahead at January, we will have a very busy month. First, it a month filled with lots of birthdays! A special Happy Birthday to our family members and friends; Angie, Howard, Barb, Madelyn, Mindy, Dad, Karla, Tara, Shane, Tom and Samuel! (And a special Happy 5th Birthday to all the kiddos in our Jan 2000 loop!) Second, we have the MN Tree of Hope ceremony on Jan 9th. If you want to honor a child from MN, who has or has had cancer, please email me. We will put up a ribbon and dedication for them. For more information: check out www.treeofhope.org. Next, on Jan 12th, my Dad goes in for his surgery. Please say a special prayer for him. On Jan 13th, Madelyn turns 5!! I can't believe our little baby is almost 5 already! Finally, at the end of the month, we will go on our annual winter vacation to Mexico. I am looking forward to just relaxing on the white sandy beaches and listening to the ocean waves gently roll in.
Madelyn has been sick with the flu (??) since Wed. She woke up at 5am and said she was feeling better. She went back to sleep and is sleeping right now. I pray she wakes up feeling really good.
Thank you all for your love, support and prayers. May God bless you with His peace and love throughout the year.
With Love,
Connie
Saturday, December 25, 2004 6:27 AM CST
Merry Christmas!
We have about an inch of snow on the ground, so technically, you could say we have our white Christmas here in MN. It has been bitterly cold, with nights dipping into the minus teens range! Bob's family is from Southern Indiana...and they just a big snow storm! They received 22" of snow! For the first time we can remember, they have a lot more snow then we do!
Santa made a special stop at our house last night. Madelyn was so proud of herself for sitting on his lap! In the years past, when Santa would walk through our door, she would get very scared. I would have to hold her in my arms throughout his visit. Santa seeing her fear, only talked to her from a distance, never invading her space. Then the minute he left, she became this incredibly big talker, saying she won't be scared next year and she will even give him a hug! It's like this little scene plays through her head for a full year, because it comes up often. And on Christmas Eve, she repeats over and over, "I won't be scared this year. I am not even going to run and hide again." So, when Santa walked into our living room last night, I focused in on her face. Instead of seeing fear, I saw the magic in her eyes. She said, "Merry Christmas Santa!" As she went over to give him a hug! Santa remembering her fear in the past said, "Madelyn, I have been waiting patiently all these years for that special hug. Thank you." Madelyn's face was beaming!! She was so proud of that moment....and now she is saying, "I knew I could do it!"
The girls opened all their presents last night. One of my favorite things to do is to watch them open their gifts. Their little faces are filled with such suspense as they unwrap their presents...wondering what is inside. Then, when they rip off the wrapping paper, the suspense is replaced with complete joy and happiness!! I always get tears in my eyes..... beautiful memories to always be cherished.
Please say a few extra prayers for all the children battling cancer, and for all the families who have lost a child to the disease.
May God continue to bless each of you. Thank you to everyone for your love, support and prayers. We truly are blessed to have each one of you in our lives!
Wishing you a very Merry Christmas and a Happy New Year!!! May your holiday season be filled with much love, peace and happiness. And may it continue throughout the upcoming year.
Before I close, I do want to say a very special thank you to Angel Sheryl! You are the most special ANGEL! I know you don't want to be recognized for all you do...but you truly give from the heart. Thank you for coming into our lives and loving us!! Thank you! Thank YOU! and THANK YOU!! The girls LOVED their presents!! (((Sending you huge hugs from us!!)))We love you!
With Christmas Love to All,
Connie
Thursday, November 25, 2004 12:01 AM CST
Happy Thanksgiving to All!!
In about a half hour, we will be having my Dad, Diane and my younger brother, Ben over for our Thanksgiving meal. Tomorrow, we will celebrate our family Christmas with my Mom, her husband and the rest of the family. It's always a busy time of the year, but I truly love being able to spend time with all.
I want to share the following with everyone. First, let me tell you a little bit about my Grandfather. He is 87 yrs old and one of the most incredible men I have met. He has always been such an inspiration to our family. He served in WWII and is the proudest Marine I know. He has always been the epitome of health! So strong physically and mentally. A few weeks after Madelyn was diagnosed with cancer, he was diagnosed with prostate cancer. He had surgery and still is getting chemo shots and is keeping it under control. However, over the past year, he has started showing signs of dementia. He has been getting progressively worse. He has been more confused and more forgetful, very normal symptoms of this disease. He is fully aware of his condition and realizes it will get worse. Anyway, this past week, he finally had his first appointment to evaluate his memory. After his appointment, I had the chance to sit with him while he was waiting for another appointment. And it is one part of that talk that I wanted to share with all. It was such a treat sitting there listening to him talk how blessed he is with his life, his health, his wife, his kids, his grandchildren and on...... and just how happy he is to be alive for the "moment." He said, "You never know if you are going to be alive tomorrow so I am thankful for everyday I am able to open my eyes and know that I am alive. I don't know if tomorrow I will be so confused that I don't know how thankful I am for this blessing so I tell everyone I can, how blessed I am for the life I have lived." Tears started running down my face.......What a Grandfather I have!! I feel I am the blessed one to have him in my life.
With that, I am thankful for my life, my family, my friends and everyday I open my eyes. Thank you all for touching my life!!! I am very thankful and so truly blessed!!
May you have a beautiful Thanksgiving. May God continue to bless each of you!!
With Love,
Connie
Friday, October 15, 2004 6:24 AM CDT
Good Morning!
I hope you are having a wonderful day! Sorry it has been such a long time since my last update. I will type a short one today.
Madelyn is doing really good. As far as her health, she is doing good. Her asthma has been under control. (knock on wood.) Her eating issues is another thing. Her daycare provider told me yesterday that she has been noticing Madelyn is eating like a bird. However, when she is home, she eats great. So, we will have to look into this and talk to her about this. She did throw up yesterday....so it's almost like when we take one step forward, we take one step back. Now for the fun news, she had such a busy and fun filled summer! The exciting news is Madelyn learned how to ride her bike without training wheels. She was so proud of herself! (And we were too!) We took a family vacation to the South Dakota. She loved everything about the trip! Her favorites included the Wildlife loop, Crazy Horse and Mount Rushmore. Cute story: We went to the lighting ceremony at Mount Rushmore. Prior to the actual lighting, they have a 30 minute presentation on all the Presidents. When they were talking about George Washington, she started crying. I was holding her in my arms, so I asked her what she was crying about. She said, "I really miss George. It's so sad he died. I really liked him." And she proceeded to cry off and on through the entire presentation about missing George. It was pretty cute. We also went to Wisconsin Dells and stayed at the Kalahari. This is our fifth year going...with the last three staying at the Kalahari. It is such an awesome place. My sister, Karla and her family, my brother, Tom, and his family, my 14 yr old brother, Ben, and our family went and spent the weekend together there. Everyone had a wonderful time!
Allie is doing wonderful! She is staying very busy with school, sports and Girl Scouts. Exciting news for her is she scored three goals in soccer, this summer! We are so proud of her!! She loves playing soccer and is really good at it. It is so much fun watching her play! She also really likes being a fourth grader and truly enjoys her teacher! We don't have to pull information from her this year. She just talks and talks about everything that happens daily at school. It is so neat to see and experience this new love for school!!
I am running out of time, since I need to get ready for work. I hope you all are doing great. Thank you for stopping back and visiting this site. We truly appreciate all the love, support and prayers you have given our family!! May God continue to watch over each of you and bless you! Have a very happy day!
With Love,
Connie
Monday, September 20, 2004 7:15 PM CDT
It is with great sorrow that I have to say that our beautiful and loving little friend, Katja Sufka, gained her angel wings on Saturday, Sept 18th at 4:30 am.
Katja will always live on in everyone's hearts, souls and memories. She will always be with us. Katja taught us how to live. She inspired us to be better people. Katja brought hope to every child fighting the cancer monster and hope to the parents of children with cancer. She taught us how to be strong when our bodies are weak. She taught us how to live.
Katja, THANK YOU for coming into our lives, even for that short time... and teaching us about life, about strength, about hope.
Please keep Aaron, Jacqui, Evan, Grandma Diane and all of their family and friends in your prayers.
With Love and Sadness,
Connie, Bob, Allie and Madelyn
Sunday, June 13, 2004 10:02 PM CDT
Hello to All!!!
I can't believe it has been so long since my last update. I am sorry for not writing earlier. I have had a lot of people telling me I need to update her site. I am warning you in advance, this might be a long journal entry.
Madelyn is doing really good!! We had her annual check up at Children's on April 17th. All of her tests came back perfect. She has grown a lot and has gained some weight!! She was 39" and weighed 37lbs! She always was on the bottom part of the height and weight charts, but not anymore. She is right on track! We had an in-depth talk with her Oncologist about Madelyn's earlier throwing up (purging) issues. (Just days prior to her appointment, she threw up a couple times.) He thinks she displays PTSD (Post Traumatic Stress Disorder.) He said she was too little to remember all of the events, however, we have no idea what her memory has suppressed. Madelyn is very articulate when it comes to her cancer. Sometimes when she says things, I wonder if she really remembers them or if she is just remembering a picture she saw.....and telling the story from that picture. I don't know? Anyway, it was a great checkup. In May, she had been having some asthma problems, so I took her in to see her regular Dr. She is doing the Pulmicort daily (via the neb) and also taking Singular (for asthma patients) in the evening. We are going to try this for three months and reevaluate. We have really noticed a difference already. She still has the Albuterol for the rescue breathing, when she is really bad. But for now, this seems to help a lot. Okay, now we got all the medical updates out of the way, lets get to the "fun" stuff. Madelyn is so happy summer is here! She loves playing outside and riding her bike! She also learned to cross monkey bars, so we are taking her to the park a lot. We also enrolled her in tennis lessons. Her class was supposed to start last Monday, but due to lack of kids signing up, her class was canceled. They are going to be starting another class at Gold's Gym, so she will be going there. She is very excited to play tennis, so I do hope the class starts soon. This fall, both girls will go to gymnastics and dance classes. Madelyn can't wait for that!
Allie is doing wonderful also. She is very happy school is out and summer is here! I can't believe my baby girl is going to be a fourth grader this fall. We recently received her scores for her 3rd grade MN Comprehensive Assessments, and we are so proud of her!! She did a great job!! She struggled in math in second grade. She had to go to "Learning Lab" for additional help. In third grade, she was tested and they thought she would do just fine without the extra help. Well, she scored above average on all parts of her testing!! Way to go, Allie!! Keep up the great work!! She is playing soccer again this year. She is such a great player! I love watching her play! She also is playing tennis again. She has lessons twice a week. She enjoys that too. Allie has a lot of plans this summer. She wants to play her sports, swim, play with her girlfriends, play sports, swim and play with her girlfriends. And as Allie put it, "It doesn't always have to be in that order either," giggle!
We have been busy around here. We finally got the pool set up and it is still filling as I type. (We started filling it at 3:30........so it's taking a very long time!) I also planted flowers today in the flower bed. My nephew, Brent, graduated from high school, so we had his graduation party here for him a couple weeks ago. It was a rainy day but his party turned out wonderful despite the weather. He is such a phenomenal young man! I am so proud of him. Him and his girlfriend, Jenny, are planning on getting married next year. Jenny's graduation party was yesterday, and they really had a nice party too! Brent and Jenny will be going to St. Cloud State in the fall. Congratulations to both of them!!!
This past Friday, we attended the Relay for Life in Kimball. I was asked to be the guest speaker for their ceremony. It was such an honor to be able to share Madelyn's story. Plus, it raises peoples awareness to Childhood cancer. I still hear the comment, "I didn't know babies could get cancer." During the last couple minutes of my speech, one of the CO-organizers for the Relay for Life, brought Madelyn out on the floor, next to me. It was not planned, but it was perfect, so everyone could see the little girl I was talking about. I almost started crying right there.
Well, I think this is long enough for now. I am tired and need to go to bed. I promise to update this soon!!
Please keep LaKota and Katja in your prayers, along with all the other children battling cancer. Also, I ask that you please say a special prayer for Jeff, who was activated and will be leaving for Iraq in Oct. He has already left the state for training. He and his unit could use some extra prayers for their safety. Thank you for all your prayers!!
Thank you again for all your love and support you have given our family. We are so blessed to have you in our lives!! May God continue to watch over you!! Have a wonderful day!!
With Love,
Connie
Monday, March 29, 2004 5:19 AM CST
Good Morning!
Just a brief entry to say hi! I can't believe it's been almost three weeks since my last update. The weather here in MN has really returned back to it's chilly state! Last week, it was in the 50's and even hit 60 one day! Today, it's supposed to be blustery and cold...in the high 30's. I hope it warms up soon!!!
Last week after work one day, I was able to get the bikes down and take the girls for a nice long bike ride. As soon as Madelyn got on her bike, she said, "Mom, you don't need to push me this year. I am a big girl now and I don't need your help." ((giggle)) She has training wheels on her bike but is really motivated to bike without them on. So, once the grass dries a little more, I will take her in the backyard and let her "learn" to bike without them!
On Friday night, Madelyn asked me if her and I could play hopscotch. It was already dark out, so I told her we would play on Saturday. Well, it rained most of Saturday. Yesterday, she reminded me that it wasn't raining and we needed to get outside and play. She had me make five hopscotch boards and we played for well over an hour! I don't think I played that much hopscotch in my life! Let me say, she is much better at the game!!
Also yesterday, I cleaned out Madelyn's room, to include her closet. Madelyn could not wait until I took all the stuff down from her shelves. As soon as I put the stuff on the bed, she grabbed the little photo album of her when she was first diagnosed. She asked me a few questions about the photos and quickly ran into the bathroom to show our contractor the pictures. (We had our bathroom gutted and are redoing it totally.) She told him all about her cancer experience and then left as fast as she entered. She was on a mission, she had to show "her" Allie the pictures too. The contractor said to me, with an amazed look on his face, "Wow, she is a very articulate little girl."
Thank you for keeping LaKota, Abby and Katja in your prayers. I do have some very sad news, on Mar 12th, Abby passed away after a long and hard battle. She is now home with Jesus. Please keep her family and Angel Sheryl close in prayers.
I hope you all have a very beautiful week! Thank you for your love and support!!
Connie
Wednesday, March 10, 2004 5:35 AM CST
Good Morning!!
I thought I would share the little scare we had on Sunday afternoon.
Allie had Madelyn were playing so nice with each other. Allie was acting like a horse, giving Madelyn rides on her back. I was watching them play, as I was talking on the phone. Suddenly, Allie sat up and Madelyn started falling backwards. So, Allie thought she would just flip her back. At this point, it was like I could foretell the outcome, so I started screaming "NO! Stop!" It happened so quickly. When Madelyn's head was on the ground, her neck snapped back, and she suddenly went limp. I picked her and she was out. She then opened her eyes and looked directly at me, as if to say, "Help me, Mom!" Then, it was like she made a gasping/gurgling sound, as if she needed air..and then went limp again. Allie called 911 and was so calm about it. I was so scared and panicking, I could not even remember our address. Allie had to tell me what it was. The operator asked, "Is she breathing?" I said, "No." All of a sudden, Madelyn came out of it and said, "Mommy, I need to puke." I hung up with 911......and Allie said something about the Ambulance. Madelyn asked if the ambulance was coming for her. I told her they were. She said she didn't want to go in the ambulance and didn't want to go to the hospital. (She was fine at that point...just scared.) The ambulance came, checked her out and said she probably had the wind knocked out of her. She was very scared for about 40 minutes after they left...... I just carried her around. When I finally put her down she said, "Hey Mom, Look! I can walk." That's our Madelyn! I was so proud of Allie being so calm, cool and collected through it all. For all of you who know Allie, knows she refuses to allow anyone see her hair messy. So, when the Ambulance arrived, she said, "I am just going to wait in my room." I inquired why, to which she replied, "Mom, I don't want them to see my hair!" lol!!
*****Prayer Requests*****
Please keep the following children in your prayers, along with all of the ones who are fighting this monster. And a special prayer for all the families who have lost a child to cancer.
LaKota~ Two weeks ago, her family found out she has relapsed with AML. LaKota is such a beautiful and precious little girl. It is very heartbreaking to hear this news. http://www.caringbridge.org/mn/laplafcan
Abby~ This little girl is extremely ill right now. Abby had a bone marrow transplant a month ago, and is having very serious complications from it. (She also is Angel Sheryl's little Princess. And looking at her picture, you can see she truly is a Princess!!)
http://www.caringbridge.org/va/abbyallies
Katja~ Katja had her second bone marrow transplant on Feb 10th. She has had several complications already, but her appetite is coming back. She is such a beautiful and smart little girl!! http://www.caringbridge.org/mn/katjas
Support Group Update: We are official now! The Gold Ribbons Support Group will have it's first meeting on Mar 22nd from 6:30-7:30. We will meet at the CentraCare Health Plaza (Woodlands entrance) in the Leonard-Street-Deinard Room. The support group is for parents of children living with childhood cancer. (It's free!) I think it will be very beneficial for parents to talk to other parents going through the same thing. For more information, email me or email us at Childhoodcancer@aol.com.
Thank you for the love, support and prayers!! We are so blessed to have you all in our lives!! Enjoy your day and God Bless!!
With Love,
Connie
Tuesday, March 2, 2004 5:29 AM CST
Good Morning!!
Happy March! I hope y'all are doing good! We have had some beautiful spring like weather here in MN. A lot of the snow is gone! I am one who is not a big fan of snow, so I get so excited watching it melt away! Spring fever has set in!
Madelyn is doing really good. She will be going back to Children's for her annual check up in about a month. This will be her first time where she won't have scans done. I will write more about her check up as the time gets closer.
I do want to share a couple of cute things from the mouth of Madelyn.
Whenever my Dad calls and talks to the girls, he always pretends he is Grandma Diane. The girls love this little game and are constantly screaming into the phone, "No, this is Grandpa!" Madelyn plays it back with him pretending to be Allie or me. Well, last night, she pretended to be Bob. It was the funniest thing hearing her talk like Bob. She didn't lower her voice, instead, she talked in a higher pitch. My Dad and I could hardly contain ourselves. She talked like Bob for about three minutes. It was very funny! Madelyn is such a comedian!
Before bedtime last night, I told her it was time to put her pajama's on. A few minutes later, she came out of her bedroom with her hands on her stomach and a very puzzled look on her face. She asked, "Mom, when the Doctor's did my surgery, did they make my belly button then too?" I wanted to giggle but explained to her why she has a belly button. She listened so intently and with the most fascinated response she said, "WOW MOM!!! I never knew that!" She turned around and went back to her room.
****Prayer Requests*****
Please keep the following children in your prayers, along with all of the ones who are fighting this monster. And a special prayer for all the families who have lost a child to cancer.
LaKota~ This past Sunday, they found out she has relapsed. LaKota is such a beautiful and precious little girl. It is very heartbreaking to hear this news. http://www.caringbridge.org/mn/laplafcan
Abby~ This little girl is extremely ill right now. Abby had a bone marrow transplant a month ago, and is having very serious complications from it. (She also is Angel Sheryl's little Princess.)
http://www.caringbridge.org/va/abbyallies
Katja~ Katja had her second bone marrow transplant on Feb 10th. She has had several complications already, but her appetite is coming back. She is such a beautiful and smart little girl!! http://www.caringbridge.org/mn/katjas
Wishing you all a beautiful day!! Thank you all for your love, support and prayers. May God continue to be with you all!!
With Love,
Connie
Saturday, February 21, 2004 6:28 AM CST
Good Morning to All!!
I hope y'all are doing good!! We are doing fine. Madelyn and Allie are staying at my sister's house for the weekend. They are having a blast there! Last weekend, we watched their children, Isaiah, Samuel and Hannah...and this weekend, they are watching the girls. Next weekend, their children will come back and spend the weekend with us. (Karla and Tom are going to Punta Cana, for a vacation!) All the kids play so wonderful together. Allie, Isaiah and Samuel will spend hours on end, playing Survivor or Alligator. And of course, Madelyn and Hannah play babies or tea party. It's a lot of fun watching all the kids play. Just listening to them all talk about different things, brings the biggest smile to your face.
We don't have big plans this weekend. I am going shopping with Tara today. And tonight, I plan on going to a benefit concert. They are having a benefit concert in memory of Cody, who passed away about a year and a half ago from Wilms Tumor. The benefit is to raise money for Childhood Cancer Awareness. Unfortunately, I never did meet Cody, but I have met his parents. They are such beautiful people!!
I do have a few prayer requests. Please keep the following three girls close to your prayers and heart.
Abby~ This little girl is extremely ill right now. Abby had a bone marrow transplant a month ago, and is having very serious complications from it. (She also is Angel Sheryl's little Princess.)
http://www.caringbridge.org/va/abbyallies
Katja~ Katja had her second bone marrow transplant on Feb 10th. She has had several complications already, but her appetite is coming back. She is such a beautiful and smart little girl!! http://www.caringbridge.org/mn/katjas
Amy~ Amy is flying to Florida today! A trip she has dreamed of for along time. The doctors recently found another tumor in her arm. She has been battling Osteosarcoma since 1999. She is such an amazing young woman!! http://www.caringbridge.org/page/amymareck/
Thank you all for you love and support!! Have a great weekend!! May God bless you all!!
Connie
Tuesday, February 17, 2004 6:41 AM CST
Kids Say the Cutest Things
Madelyn and I were just talking about her favorite blanket. (She received this blanket from her Aunt Kristi, right after she was diagnosed with cancer.) Madelyn told me she had this blanket since she was a baby. I said, "Yes, you have had it for a long time now." She looked at me and said, "Yes, Mom, but now I am growing up." To which I agreed. Then she said, "You know you are a grown up when you can reach balloons." I asked her to repeat her comment ... and she said in a very matter of fact tone, "Well, Mom, a person is a grown up when they can reach balloons in the house. You know, the balloons that go to the ceilings? Well, I am just about a grown up because soon I will be able to jump up and get them."
Wishing you all a very beautiful day!!
With Love,
Connie
Tuesday, February 10, 2004 9:17 PM CST
It is with a very heavy heart that I am dedicating this entry to Luke Sweet. Luke passed away on Sunday, after battling Neuroblastoma for the past two and a half years. Luke and his family were just returning home from his Make A Wish. His wish was to be a real cowboy in Texas. His was able to be that real cowboy in Texas, and that is where he passed away.
We were blessed with the opportunity to meet him and his family in Chicago, (at the NB conferences) the past two years. Anyone who has met Luke, will agree with me, he was filled with so much love, laughter and happiness! A total reflection of his family. Luke was an inspiration to many people and he will continue to live on in our hearts.
Please keep this special family close to your hearts and prayers. If you would like to leave a message in their guestbook for them, please go to http://www.caringbridge.org/oh/lukesweet.
Thank you!
With Sadness and Love,
Connie and Family
Monday, February 9, 2004 5:20 AM CST
Good Morning!!!
I can't believe it's almost mid February already!! Well, I will give you an update on what's been going on with us.
Madelyn is doing great! She still has a slight cough, but we have been doing daily neb treatments to keep her asthma under control. I have a feeling her cough will continue until spring arrives. She is such a comedian! We had our neighbors come over Saturday night, and what a little entertainer she is. She had us laughing for an hour straight.
Allie is doing wonderful too. She sold 165 boxes of Girl Scout cookies! I was so impressed!! Thanks to my niece, Angie and her fiance, Matt, who helped her sell quite a few of them!! She also is doing very good in school! We are very proud of her.
Bob and I celebrated our 10th wedding anniversary on Jan 24th. To celebrate, we took a 7 day vacation in Playa Del Carmen, Mexico. We went with our friends, Tim and Becky. (The same couple we met last year in the Dominican) On Jan 26th, we met at a hotel in Minneapolis.....and flew out on the 27th. We had another phenomenal vacation! We had so much fun!! We spent a lot of time on the beach, soaking up the sun, playing in the water...or just talking and laughing. We did go on a snorkeling trip that took us to three different places. The first was a lagoon area, where the fresh water and the salt water meet. Beautiful fish...and we even got to swim with a big sea turtle. The second place we went was to an underground cave. We had never snorkeled in a cave before, and this was very awesome to see. The farther you went into the cave, the lighter the water became below. And the last place they took us to was like a deep watering hole filled with lots of fish. Here, we were able to jump in off the cliff...and just play. It was really a great trip. We also went to Cozumel for a day, which was nice too. We really missed the girls and I know they were excited to have us come home. A huge thank you to Angie and Matt for watching them all week!! It's the best thing knowing your children are going to be given so much love in your absence! THANK YOU, BOTH!!
The Support group for Parents of children with cancer is coming along. We had a six hour facilitator training yesterday. We hope to have our first meeting in March. I think this support group is something very needed here in this area. More updates to come on this!!
A very special THANK YOU to Angel Sheryl!! Thank you for all the special things you do! You are an amazing woman.....and your title is so fitting! (((Thank you!!))
And finally, thank you to all of you for your love, support and prayers. It has and will continue to be so very empowering to our family the outpouring of love, compassion, and encouragement that each and every one of you have expressed. You are leaving permanent footprints on Madelyn's heart and touching us in ways that are beyond being able to express enough how eternally grateful we are. God has truly blessed us!!
With Love,
Connie
Sunday, January 18, 2004 6:21 AM CST
Good Morning!!
It is very cold here!! The weather channel said it was -7º! Brrrr!! I am not a winter fan at all. I can't wait for summer!! >smile<
Madelyn's birthday was wonderful!! It brought tears to my eyes, watching her. She soaked up all the love and happiness that was all around her and had this glow about her! What an incredible feeling it was to watch her just glow! She received a lot of great presents. We bought her the American Girl Today doll. Right after she opened it up, she had to take the doll into her bedroom and formally introduce her to all of her other babies and dolls! It was precious!! (Her exact words, "I named her Madelyn but I will just call her Maddie for short. Okay?" She cried so hard at bedtime, knowing her birthday was about to end. She said, "I want everyday to be my birthday." If only we all could feel and share that magic in birthdays.......
Today, we are celebrating her birthday with my family. Our family has a lot of birthdays in Jan. We get together and celebrate them all together in one day!! Madelyn wanted a tea party birthday party, so we will have a "side bar" tea party for her and Hannah. (her best friend and cousin) They will have all of their babies and stuffed animals in attendance. >very cute<
I took Madelyn into the Dr. yesterday, because her asthma flared up again. They put her back on Prednisolone. It works wonderful!! I am going to ask for a referral to an asthma specialist. Madelyn has had such a rough time with her asthma this winter. It seems as soon as we get it under control, she gets hit with it again. Allie is on Advair, which she takes twice a day. (They upped her dosage last spring.) This is the first winter her asthma has been under control. I hope there is something out there to help us control Madelyn's. (We do neb treatments with her, but this winter, it has not helped.) It's heartbreaking seeing her struggle for a breath, in between her coughing attacks.
Allie is doing great and staying extremely busy! She had a Girl Scout sleep over on Friday night. We had eight girls here, along with the troop leader. It was a lot easier than I thought it would be. They had such a fun time!! It's cookie time!! Allie will be selling them again this year!! Her goal is to sell 140 boxes. I think she sold 120 something last year. I think it's a good goal.
The Tree of Hope was last Sunday. It was such a beautiful ceremony!! It is a very emotional event to be involved with but, to honor these children, who are forced to relinquish so much of their innocence and childhood, it's rewarding too. It is our way of saying, we will never forget what you all have had to go through and we will never forget the ones that passed away. We have to hope and pray they find a cure ASAP, so not another child has to go through this!! Leah and I want to update the Tree of Hope webpage with photos from it. Hopefully, we can get together soon and work on it. I will let you all know when it's done.
Before I sign off, I want to wish the following people a very very Happy Birthday!! Happy Birthday to my Dad, Angie, Barb, Howard, Karla, Tom, and our Godson, Samuel!! May each of you capture that magic glow of birthdays....so everyone can see how special you feel!! Wishing you all a birthday filled with love and laughter!!Enjoy your special day!! (I love all of you!!!)
***A very special thank you to everyone for leaving the sweetest messages in the guestbook. As I type this, I have tears in my eyes......Madelyn gets the biggest smile when I read them to her. It is like she absorbs every word you write. So, thank you again!!***
And I thank God daily, for leading us to where we are today. He has blessed us with the most amazing family and friends. Thank you all for your love and prayers!! {{Big Hugs to All}}
With Love,
Connie
Tuesday, January 13, 2004 5:46 AM CST
Happy 4th Birthday Madelyn!!!
Wishing you a day filled with love, laughter and lots of fun!! I hope your day is so truly special!! Also, I hope you enjoy every single second of your fourth year of life! You have taught us so much about life and how to cherish everything about it. We love you, honey!! Have a VERY Happy Birthday!!! With all of our love, Mom, Dad and Allie!!
Four years ago at this time, we were just checking into the hospital. (I was scheduled to be induced on her due date.)
At this same exact time, my Mom was just getting in her car to drive down to be there for her birth. (My sister, Bekki, was supposed to be there also, but we had a significant snow storm the evening before.) They started the actual petocin around 7am. I really didn't feel any contractions until noon. At 2:10, my Dr. checked me, and I was dilated to a six. Since I had an epidural in, she told us it could be a few more hours. Five minutes after she walked out the door, I knew it was time to push. Of course, my Dr. had already left the hospital, in route to the clinic, so they could not reach her. Once they got a hold of her, she raced back to the hospital. With Bob and my Mom by my side, Madelyn Marie was born at 2:54pm!! (I get teary eyed just thinking about it.) Giving birth and then holding your newborn baby in your arms is one of the most incredible moments in life!!
I thought it would be special to share the next thing with you all. I wrote my Mother a letter, along with a beautiful silver engraved photo frame book, about a week after Madelyn's birth. The frame had a picture of Madelyn in my Mom's arms for the first time, engraved on the frame was "First Breath." Here is the letter.
Grandma,
January 13, 2000! The day of my birth and YOU were there! I am so happy you were able to see me being born. I know my parents are extremely delighted they were able to share the experience with you. It is an event that can be cherished in all of our hearts forever. It is so hard to express how meaningful it was......except to say....Thank you.
I may not remember the actual events of my birth, but I will always know this. You were able to share my birth with me. Your first sight of me was my head and hair. Then, you watched the rest of me, slowly enter the world. My first breath of air was at 2:54pm, on Thursday, January 13 and it was the same air you were breathing. We shared that breath and that moment-on the most special day of my life.
Grandma, you were there when my Mom was born. And you were there when I was born. I hope you can be there when I give birth to my child. I will need you there to hold our hands, like you held my moms the day I arrived. Your presence gave her so much love and strength. I will need that too.
You will always hold a special place in my heart. Thank you for being part of my first breath!
I Love You,
Madelyn
A very special thank you to everyone for your love, support and prayers. We are so blessed!! Have a wonderful day!
Again, Happy Birthday, Madelyn!!
With Love,
Connie
Tuesday, December 23, 2003 10:03 PM CST
Happy Holidays!!
I am sorry it has been so long since I updated Madelyn's site!! We have been so busy with everything. So, now for the update: (I will try to keep this brief.)
Medically speaking, Madelyn is doing really good now! She had been complaining of her tummy hurting off and on for almost month. Finally, we took her into the Dr, so he could examine her. He diagnosed her with reflux esophagitis. (After reading more into this, I found out it is another name for GERD.) She takes a pill every morning and it seems to be working. She just told me last night that her tummy doesn't hurt anymore. Madelyn is so responsible about taking it, because she no longer feels the pain. The minute she wakes up, she walks into the kitchen, and tells us she has to take her tummy pill. If her stomach starts hurting again, we will take her to a gastroenterologist for a more in-depth check up. But for now, she is feeling wonderful!!
Madelyn is so excited for Christmas!! We took her shopping so she could buy Allie a present. It was quite cute when she put a baby doll into the cart and said, "Allie is going to love this!" (Madelyn is the one who plays with baby dolls.) But, since she wanted to buy it for Allie, we bought it. Later that night, Madelyn started crying that she wanted it and didn't want Allie to have it. After much discussion, it will remain as a gift to Allie.....but I am anxiously awaiting the big moment when Allie opens it.
Allie is doing wonderful. She is now officially on winter break. I am sure she will stay busy as ever. To catch you up on her: She was sick with that nasty stomach flu. She was so sick that her and I had to stay home over Thanksgiving. We were all supposed to go to Indiana to see Bob's family but, it ended up just Bob and Madelyn. Allie and I had a lot of quality time together. We went to three movies, played a lot of games and did a lot of shopping. Allie also is looking forward to Christmas!
Bob is staying busy with his job. He had a great time going home to IN. The last time he went home for a holiday was 15 years ago! He also had his class reunion the same time so he was able to see all of his old classmates! He truly enjoyed every minute he was there!
As for me, I am staying busy with holiday preparations, my new job and the Tree of Hope. The tree ceremony is on Jan 11th. I will update more on that later. And a little over a week from now, Allie and I will be flying out to Michigan to visit my girlfriends! We are so excited!!!
I just wanted wish every one a very Merry Christmas. This is such a difficult time of year for so many families. Especially for those celebrating their first Christmas without their child. Please keep them close to your heart and prayers. And a special thank you to all of you.....for all your love, support and prayers!! We are truly blessed to have you in our lives!
With Christmas Love,
Connie, Bob, Allie and Miss Madelyn
Saturday, November 8, 2003 8:58 AM CST
Good Morning!!
It is a very chilly morning here in Central Minnesota!! And yes, we have snow on the ground! I got home last night after being gone since Sunday. I was down in Minneapolis for training. It was very precious seeing the surprised look on Allie's and Madelyn's faces when I picked them up yesterday afternoon. They were expecting Bob to pick them up. So, when I showed up and surprised them, their eyes, smiles and actions told me they missed me as much as I missed them. We played a lot of games last night and I found myself holding the girls as much as I could! I am extremely happy to be home!
It was a very draining week. Mentally and emotionally. I just accepted this new position so I had to go to training for a week. There is a lot to learn, but I really like the challenge this new job presents. I think back to a year ago when I was still a police officer. I remember the mixed feelings I felt when I decided to hang up my uniform and pursue a new career. I was very nervous about the big career change. And I handled it just fine. I have only been out of the police world for eleven months but I now realize how many doors it has opened. And I am sure this new job will be even more rewarding too! The best part of leaving the police world is that I am able to be home with the family every night and I am able to tuck the girls into bed. (I do not miss working holidays, rotating shifts, nights and weekends!!!!) I don't regret the decision for one minute.
It also was an emotionally difficult week as well. My heart has been filled with such saddness since I heard Zach passed away. My heart breaks for Jen, Bill and Brady. I cannot even imagine what they are going through. I guess it hits me the hardest when I think how blessed I am. Like for example, when I picked up the girls yesterday and felt them in my arms......as I was hugging them......tears filled my eyes thinking of how much it would mean to Jen and Bill to be able to feel Zach in their arms again. Or this morning when I was making the girls breakfast, I was thinking about Jen...and how difficult it must be only preparing one breakfast now, when before I am sure she fixed two, one for Zach and one for Brady. It is so very very sad. I really wanted to be there for them this week, for the wake and funeral, however, I could not get out of my training. That is another thing that weighed heavy on my heart all week. Please continue to keep this precious family in your thoughts and prayers.
I had a lot of alone time in the evenings to think this week. My thoughts kept going over the journey I have been on since Madelyn was diagnosed with cancer and why I continue to feel such a strong passion to be stay connected to the "world" of childhood cancer. There are times when I think it would be easier on the heart if I would try to walk away, but I know I could never do it. I know I am following my heart. I truly feel blessed to have a very happy and healthy child, yet I can see how it easy it could be to fall victim of "survivor's guilt." I know it wasn't Madelyn's time to go home and be with God. Madelyn's chemo treatments are behind her, and as I was asked at the Neuroblastoma conference by an 18 yr. old girl with NB, "Why in the world are you here?" I had her repeat her question, as if I didn't hear her correctly. She again asked, "Why would you come to this conference if your little girl is cancer free? Don't you just want to get on and enjoy life and put this all behind you?" I guess I stood there baffled. That question she asked me continues to come up over and over in my thoughts. For me, it was the biggest life changing event for me. It's not like I could get over it as if she had a cold. It changed who I was, it allowed me to have a relationship with God, it made me a better wife, Mom, friend, it made me a better person, it changed how I looked at the world, it made me realize just how truly precious life is. So in a sense, I am getting on with life and taking the experience with me and learning to enjoy every single second. Since Madelyn's diagnosis, I have felt this strong calling to do something to raise awareness for childhood cancer and more importantly is to honor those brave and precious children who have had to battle it. Yet after spending hours reading these websites and having my face drenched from tears, I ask God if this is truly the path I am supposed to be traveling. I know this is where I am meant to be for now, and I go on...... I don't know where I am going on this journey but I feel as if I have a purpose. And until God leads me on a different journey, I promise to continue on. Jen and Bill, just know, Zach and your family will be with me in my heart and thoughts every single step of the way!
Please continue to keep Jen, Bill and Brady in your thoughts and prayers. Also, please say a special prayer for another local boy, Noah and his family. Noah is a 7 yr old boy who was diagnosed with ALL about ten months ago. Earlier this week, his family was told he has about a week to live. Please pray for a miracle!!!!
Thank you all for your love and kindness!!
With Love,
Connie
Saturday, November 1, 2003 7:19 AM CST
******In Memory of Zachary Buckentine******
This journal entry is in memory of Zachary Buckentine. Zachary passed away in his mother's arms on Friday, Oct 31st.
Bill, Jen, and Brady, Please know that we will continue to pray for your family, that God will wrap His loving arms around you and give you the peace that only He can give. Thank you for sharing Zach's life with us - and for being the living testamony of what Christ can do in our lives.
Please continue to keep his family and loved ones in your prayers. www.caringbridge.org/mn/zacharyb
With Love,
Connie, Bob, Allie and Madelyn
Sunday, October 19, 2003 9:35 AM CDT
***NEW PICTURES***
Warm Fall Greetings to All!!
Welcome back to Madelyn's site!! I hope everyone is doing great! We are having such beautiful weather here. It is supposed to be in the high 70's here today!! I wish it would stay this warm year round!! lol!
Madelyn is feeling better. She has been fighting some type of virus. She started running a fever on Thursday night. On Friday night, it was 103.1! She had no other symptoms except for the fever and feeling awful. She said she felt like she needed to throw up, but never did. (How ironic, when she really is sick, she can't throw up.) Yesterday, she felt somewhat better but still had a low grade fever. This morning, her fever is gone!! Hopefully, what ever she did have is gone!! If she continues to feel well, I want to take the girls to a pumpkin patch this afternoon. I know they would love it!! So, we will see. Madelyn has been on a mission lately. She wants to learn how to write and read. So, she keeps asking us how to spell everything. She then writes down the letters and practices the words over and over. If you ask her how to spell certain words, she spells them right out. She knows how to spell, "Madelyn, Maddie, Allie, Connie, Mom, Bob, Dad and Mississippi." Yesterday, she wanted to make a sign for her babies that said, "No Smiling." Why? I don't know. Most of her baby dolls aren't smiling anyway! lol!! So, she now can spell "SMILING." She practices all of her letters all the time. From the minute she wakes up to the minute she goes to bed, she is writing in her tablets. Even when she was sick, she laid in her bed with her tablets and markers, practicing letters between naps. She is a very smart little girl!! (I scanned a picture of her writing...so check out her picture page.)
Allie is doing great also!! She has been to the roller skating rink twice this week. I took the girls on Tuesday night, for a school party. And then yesterday, Allie went there for one of her best friends birthday party. She loves skating and is very good at it. She also is doing wonderful in school! Last year, math was a struggle for her. Over the summer, we worked with her on it and it really helped. This year, she seems to understand it and actually enjoys it. We are so proud of her!! She is excited for Halloween too! She is going as a Bratz girl. The costume is adorable on her!!
Update on the MN Tree of Hope. We had a meeting this past week and confirmed the date and time for the 2nd annual MN Tree of Hope. It will be held on Jan 11th, 2004 from 1-4pm. The tree will be on display at the CentraCare Health Plaza in St. Cloud. We are trying to get it displayed at the Holly Ball, hopefully we can! Again, we will be asking families from MN to place a ribbon on the tree, to honor their brave child who has or has had battled cancer. We also hung dedication cards for the child, below the ribbons. The dedication cards contained the child's name, (last name is only printed if the parents request it) age, where they live, and type of cancer. Many families included a short message to their child or whatever they wanted to write. A lot of them also sent photos too. If you saw last year's tree, I think you would agree with me, it was so touching, beautiful and special. We are taking names and information now until the last week of Nov. So, if you know any child (even if they are adults now and had cancer when they were young) please pass this information on to them. Either email me or email: Childhoodcancer@aol.com. Also, watch for details on the website: www.treeofHope.org. (We still have to update it!)
Well, I better close for now. Thank you for coming back to visit Madelyn's site! Please pray for the kids who continue to battle cancer, and for their families. Also, remember and pray for those who have lost their child to this cancer monster. May God bless you all!! Have a beautiful day!!
With Much Love,
Connie
Tuesday, October 7, 2003 5:47 AM CDT
Hello Everyone!!
I hope y'all are enjoying this beautiful fall weather!! This will be a short update since I am going to write about a few other childhood cancer events we are involved with.
We have been staying very busy. I took the girls down to my Dad's house this past Sunday. They played with the puppies and were able to ride the horse!! They had a blast! Madelyn is doing good. She has been struggling again with her throwing up issues. In the past week, she has thrown up three times. I think it's time to make another appt with her therapist. Other than that, she is doing great!
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"Local Support Group"
I am so excited to announce that we have formed a local childhood cancer support group!! The support group is for bereaved families, children who are being treated for cancer and their families, and survivors of childhood cancer and their families. Our first meeting will be held at 6:30pm-8:00pm, on Oct 13, 03. The first meeting is for parents only, and we will be meeting in the Kremers room, at the CentraCare Health Plaza. (Use the Woodlands entrance, take elevator to Lower Level and the Kremers room is to the right.) For more information on this, feel free to email us at childhoodcancer@aol.com.
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"MN Tree of Hope"
We also will be organizing the second annual MN Tree of Hope, which will be displayed at CentraCare Health Plaza. The MN Tree of Hope was created to honor all of the children from MN who have or have had cancer. Our goal for next year is to get this tree moved down to MN State Capital. If anyone can help us in accomplishing this goal, please let us know! Leah and I should be updating the MN Tree of Hope website in the next couple of weeks. (www.treeofhope.org) ********************************************************************************************************
"LUNCH FOR LIFE"
I want to tell you about a campaign that began on Oct 1st. It is called "Lunch for Life" and the goal is to raise as much money as possible, in 10 days, for Neuroblastoma research. Most children diagnosed with Neuroblastoma Stage IV do not survive long term. It is a rare and aggressive cancer. Sadly, there is little money for research for our children currently battling Neuroblastoma.....or for the ones who will be diagnosed in the future. We want to offer hope, to give them a better chance for survival.
The idea for "Lunch for Life" came from Mark Dungan, a loving Dad of a 2 year old girl, Sydney who is also battling this disease.
Here is Mark’s story:
“The theory behind "Lunch for Life" is very simple. We are asking everyone we know to give up their lunch -- about the cost of five dollars -- and donate it to the Children's Neuroblastoma Cancer Foundation. It is really much more than this but the basic premise remains true. We have received public support with our effort and we are prepared to make a dramatic impact nationwide and internationally. We have planned some press coverage and we are hoping that a ground swell of support will take our grass roots campaign to the national press markets. Here is how it works. I am going to ask the hundreds of supporters for my daughter to help me in this crusade. Many are friends and acquaintances but many more are people we did not know until we joined in this fight against Neuroblastoma.
On October 1, 2003, I am going to ask approximately 500 of these people to do a favor for my family, for your family, and for the thousands out there yet to be diagnosed and donate five dollars to the CNCF. Furthermore, I am going to ask that they propagate this challenge by asking five of there closest friends to do the same and then continue the challenge to each new group of friends each day for a total of ten days. If we can inspire our friends and family and the thousands of others out there we can make a difference. It takes a large quantity of people and this method will get the word out. A sample of what one person could do is found below.
The mechanics:
Day 1-1 person asks 5 friends to donate 5 dollars Total: $25
Day 2-Those 5 people ask 5 of there friends to donate 5 dollars Total: $125
Day 3-Those 25 people ask 5 of there friends to donate 5 dollars Total: $625
Day 4-Those 125 people ask 5 of there friends to donate 5 dollars Total: $3,125
Day 5-Those 625 people ask 5 of there friends to donate 5 dollars Total: $15,625
Day 6-Those 3125 people ask 5 of there friends to donate 5 dollars Total: $78,125
Day 7-Those 15625 people ask 5 of there friends to donate 5 dollars Total: $390,625
Day 8-Those 78125 people ask 5 of there friends to donate 5 dollars Total: $1,953,125
Day 9-Those 390625 people ask 5 of there friends to donate 5 dollars Total: $9,765,625
Day 10-Those 1953125 people ask 5 of there friends to donate 5 dollars
Total: $48,828,125
Now, I realize that the numbers are astronomical but that is the way that it works out. Some will give much more than five dollars. Some will tell hundreds of their friends and some will not tell any. It takes every one being diligent and checking up the following day to make sure their friends have followed through, but it can work. At the very least it will raise a truly substantial amount of money and at its very best it will exceed our expectations. Regardless, in just ten days of our combined effort we will change the world of Neuroblastoma. There are enough of us.”
There you have it, one man’s idea that may affect thousands of lives in a positive way. Please accept our invitation to “lunch” and make your donation to the Children’s Neuroblastoma Cancer Fund; they are a registered 501(c) (3) organization and as such donations are tax deductible. You may use the following link to visit the IRS’ website to confirm their status, after arriving at the website, type in “Children's Neuroblastoma”
People can donate online at:
https://www.cncf-childcancer.org/donation.asp
(it is a secure site accepting Visa, MasterCard, Discover, and American Express)
People can make their pledge online at:
http://www.sydneydungan.com/Pledge_Page.asp
After providing their information, they will be contacted by a volunteer or sent a pledge card to make their donation by mail.
People can call:
1-866-671-2623 CNCF direct line
1-877-795-7948 Mark's office, volunteers will be standing by
People can fax pledge/donation card to:
1-630-351-2462
People can mail their donations to:
Children's Neuroblastoma Cancer Foundation
P.O. Box 6635
Bloomingdale, IL 60108
Your donation is tax-deductible to the full extent of the law.
And please, please, forward on this email on and invite some of your friends, families, and business associates to Neuroblastoma’s Lunch for Life.
***UPDATE ON THE AMOUNT RAISED AS OF TODAY (OCT 7th) The Lunch for Life has $30,762.00 so far!!!!
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Prayer Requests:
Please keep Zachary, Katja, Noah and all the other children fighting this horrible disease in your prayers.
Thank you all so very much!!! We are blessed to have y'all in our lives! We could have never made it this far without you! Thank you for your love, support and prayers!! Whether you are family, friends or just surfing in, we thank you for visiting Madelyn's website. Please let us know you visited, by signing Madelyn's guest book. Both of the girls love it when I read them their new messages! Wishing you a very beautiful day!! May God bless you all!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, September 13, 2003 4:39 PM CDT
***I added two new photos***
Hello to All!!
I hope everyone is doing wonderful! I can't believe it's already mid-September! Where did this summer go? It seems like it just flew by. We did have a jammed pack summer. Hopefully, next summer we can relax a little more. Well, it's time for updates!!
Madelyn is doing wonderful! She got her cast removed on Aug 25th, just in time for our vacation in Wisconsin Dells. She was so excited to have it removed, so she could enjoy all the water slides and pools. She has been in a splint since then and it should be coming off next week. It appears to be healing nicely. She also has been doing very good controlling her throwing up issues. We only had a few episodes in the past month and she talked her way through them!! Madelyn has started Preschool at her daycare center. She really feels like a big kid now. lol!! On Sept 1st, we celebrated her third year of being cancer free!! God is so Great!! Madelyn has been asking a lot of questions about her cancer lately. I think she is finally realizing that most children she plays with didn't have cancer. She also has become more articulate when telling people about her cancer story. It truly is amazing to hear a three year talk about it so matter of fact. If only the experience was as easy as she makes it sound.
Allie had a super fun summer!! She stayed extremely busy with soccer, tennis, playing with friends and all the field trips she took! She is now in 3rd grade!! She was so excited to see two of her best friends were in the same class as her! She also has started back with her Girl Scouts, which she really loves. Allie has truly matured in the past two weeks!! It has been awesome watching the changes!!
Bob is supposed to be changing work days with his job. So, hopefully soon, he will be off on the weekends. He still is staying busy with little projects around the house and preparing for the renovation project of our bathrooms, later this fall.
As for me, I am staying busy with the house, the girls and work. Recently, I went to Chicago and met two girlfriends from my January 2000 Mom's Loop. We all joined our online "loop" in May 1999 and most of us had our children in Jan 2000. Since joining, we all have formed this incredible bond of friendship. (There are a total of seven of us on our loop. However, only the three of us could make it.) We had so much fun through out the entire weekend!! To describe the weekend in one word, "Phenomenal!!" We decided to make this an annual get together!! I cannot wait for next year to come!!
Before I close this journal entry, I do want to ask you to keep the following families close to your heart and prayers.
~For Mary~ who just had a heart transplant last Sunday. Jeff, Mary's husband, and I were partners for 18 months when I was a police officer. (This family is so very special to us.)
~For 4 year old Katja~who had a bone marrow transplant in May, and now they have received a few abnormal results from their test.
~For 2 year old Zachary~ His CT scan revealed a tumor in his brain. His doctors believe it is recurrent cancer.
~For 3 year old Addison (AJ) Toivola and his family. AJ (AKA as Batman) passed away last week after a year and a half battle with Liver Cancer. We were blessed with meeting him and his family last January at the Tree of Hope Ceremony.
~For 6 year old Noah. His blast counts keep going up, meaning his cancer is still growing.
~For Dr. Kim Esterman, who recently passed away after fighting Neuroblastoma for years and years. We had the opportunity to meet this incredible woman at the Neuroblastoma Conference in Chicago last year. She will be greatly missed.
~For all children who are fighting cancer everywhere!!! September is Childhood Cancer Awareness Month!!
We can never fully express how very thankful we are for all of your fabulous support. Your words of hope, encouragement, your faith and your love.....they will never be forgotten and we will be forever grateful. Madelyn is destined for greatness and the world has much to learn from this beautiful young girl. She is a gift to us all... May God continue to bless you!
With All My Love,
Connie
Monday, July 28, 2003 5:36 AM CDT
***I added two new pictures on the photo page.***
Good Morning!!
Welcome back to Miss Madelyn's site!! Sorry it has been so long since I last updated!
I will try to make this short, but I have a feeling it will be quiet lengthy when I am finished.
Madelyn is doing good. She has been going every two weeks to see her therapist about her purging. She really has benefited from these sessions!! It has been over three weeks since she last made herself throw up or even mentioned she felt like she wanted to. She really likes her therapist, so I think it makes her work all the harder. She may deal with these "sensations" to throw up for life, she just needs to continue to work through them. We are so proud with the progress she has made so far!
This past Friday, my sister, Karla, took Madelyn on her first "ever" camping trip to Mille Lac. Her first experience ended ten minutes after arriving, when Madelyn fell off the step on her deck and landed on her arm! We met Karla halfway between here and Mille Lac. We then took Madelyn to the clinic. They took x-rays of her wrist and yes, she did break it. It is broke in two places...and it is pushing on another bone, causing it to bow out. We are taking her back into the clinic today, where they will decide if they need to do surgery to break the other bone that is being pushed out. They would have did it Friday, however her arm was too swelled. She has a temporary splint/cast on, and she will get the regular one today. The broken arm hasn't slowed her down one bit. As soon as we got home from the clinic, she asked for her roller blades because she was going roller blading. I told her she can't go roller blading. So, she said, "Well, I want my bike then, because I am going biking." She is very determined to not let this get in her way. She has mastered swinging with it on, along with a lot of other things already. She has the "It's not what I can't do, it's what I can do" attitude. She is truly amazing!
I have to tell you I cut her hair yesterday! She has very baby fine and super thin hair to begin with. Every so often, some of her hair starts falling out, and then it grows back...so we end up with all different lengths. To put her hair up in ponytails is an ordeal in itself. She likes wearing her hair down. So, I decided to trim the back! I cut about two to three inches off. After I got done, I looked at her, and asked if she wanted bangs. She was constantly pushing her hair out of her eyes.... She said yes......and away I clipped. Her hair looks so darn adorable!! I love it!! I wish we would have did this a long time ago. It changes her look so much! She looks just precious!!
Allie is doing great!! She has been staying extremely busy playing soccer, tennis, swimming and playing with her friends. Her broken toe healed very quickly so she didn't miss many soccer games. She really has been playing great and giving her 100 We are so proud of her!
We have been very busy this summer. With redoing our house to vacations and work, it seems like we haven't had a lot of time just to relax. At the end of June, we went to Chicago for the second annual Neuroblastoma Conference. What a phenomenal experience that was! They had some of the top NB researchers and doctors there! Also, the feeling you get meeting all these families who have dealt with Neuroblastoma is amazing. It seems like you bond immediately, and everyone becomes one big family! It was our second time going, and you can hardly describe how inspirational the entire conference is!! Over the 4th of July, we went to St. Peter to visit our friends we met in the Dominican Republic! We had such a blast!! And then the weekend after that, Allie and I went to Sioux Falls, to my nephew, David's wedding. It was so beautiful! Congratulations to David and Kari!! And last weekend, Lisa, Tim, Madison and Amber stopped by our house to visit us. We met them in Chicago at the conference. They were on their way back to Iowa, from a vacation at Leach Lake. They did not have Madison and Amber along with them in Chicago so it was really neat meeting them!! They are such beautiful girls!!
I just realized I am running out of time. I will update this site after Madelyn's appointment.
Thanks for all your love, support and prayers!! Have a beautiful day!!
With Love,
Connie
***Updated at 9:54PM***
Madelyn did not have to have surgery!! Her Doctor felt the cast should do the trick. The cast needs to stay on for five weeks and then she will go to a splint. Thanks for your thougths and prayers everyone!!!
Sunday, June 15, 2003 3:06 PM CDT
Summer Greetings to All!!
Sorry it has been such a long time since I updated! I hope you all are doing great!! We have been so busy! I will give you a full update on what's happening with all of us!
Madelyn is doing great! She had her first visit with the Psychiatrist last Wednesday. (For her throwing up/eating issues.) It was a good visit. He thinks it is a learned behavior from when she had cancer. (We agree with him.) The plan is to keep working with her when she expresses she wants to throw up. It's been two weeks since she has actually thrown up. Last night around 9pm, she told me she had to throw up, ran to the bathroom and put her head above the toilet. I talked her through how she was feeling and then distracted her with other things. It worked! Hopefully, these feelings will subside with time. Okay......let's get to the fun stuff. Madelyn's newest hobby is biking. (with training wheels) For being such a novice biker, she amazes us with her ability to control the bike and maneuver around objects. I am sure the training wheels will be off before long. She already possesses the attitude of a pro biker! She bikes with her head bobbing, one hand on the handle bars and the other on her hip! She cracks us up!! Since we haven't filled our pool up yet, I took Madelyn to a wading pool yesterday. She had so much fun!! She giggled and laughed the entire time!
Allie is also doing great! She went camping this weekend with my sister, Karla, and their family. Allie is so happy school is out for the summer! She is going to be a third grader in the fall. She started soccer already and they had their first game two weeks ago. They won 7-1! Allie did superb!! She was so amazing to watch! Unfortunately, last Sunday, stubbed her pinkie toe on a chair, and broke it! So, she isn't able to play for a few weeks. She was heartbroken! But, she is nursing it well so she hopes to return as the goalie in a couple weeks. Allie will start tennis in July and she is really looking forward to that as well!
Bob and I are doing good too! We are smack dab in the middle of a big renovation of our house. We had a new patio poured last month. We went with a stamped patio using colored concrete. It looks excellent! Last week, we had all of our windows replaced and added a bay window in our living room. Currently, they are almost done with the siding. Monday, they will finish siding the garage and the soffet and then they have to cut all of the new gutters. Hopefully by Wednesday they will be finished. On Thursday, another crew will come in and brick the front. It is really starting to look awesome!! We have a huge mess around our yard, but it's only temporary. Whew!
We also have been keeping ourselves involved with different cancer functions. Locally, there was a Pediatric Cancer Picnic which was really fun. Last Friday, Madelyn walked in the Kimball Relay for Life. She was very nervous until she did the survivor lap. Then, she just wore her biggest smile ever!! We also are going to the second annual Neuroblastoma Conference in Chicago at the end of the month. We are very excited to attend it again. They have recruited some of the top Neuroblastoma specialists/researchers in the US to speak!! We are blessed to be fortunate enough to attend!! I know we will learn a lot! Plus, they have a kids room for Allie and Madelyn to play in. The entertainment they had last year was phenomenal!! The girls are so excited for it again!! Almost every weekend in July is already filled, but I will fill you in on the happenings next time!! giggle!!
Well, I think I typed enough for now. I promise to update more frequently! I hope everyone is enjoying their summer!! Happy Father's Day to all the Dads!!!
Thanks for all the love, support, smiles and prayers you bring our family!! We are so blessed to have you in our lives!! Have a beautiful day!!
With Much Love,
Connie
Friday, May 9, 2003 4:36 AM CDT
May 9, 2000....exactly three years ago today. The day Madelyn was diagnosed with Neuroblastoma cancer. As I think back to that day, it immediately brings tears to my eyes. Those three words, "She has cancer." will forever be with me. Along with the series of events that followed those words. Sometimes it feels just like yesterday and other times it feels like decades ago. On this date, for the past two years, I have caught myself watching the clock and reminiscing the events that took place throughout the day. It was a little past 10:00 am when her Doctor told me she had cancer. An hour later, she was getting a CT scan. My Dad arrived right after she was done with the scan. At 1:30, she was admitted to Children's Hospital, at 3:00 she was getting xrays and another CT scan...and so on and so forth. Today, as I watch the clock and relive that day, I am going to take the time and think about the plethora of life lessons we have gained through this experience. God has truly blessed Madelyn and our family. And we would not be where we are today without His teachings and guidance and the love, prayers and support from all of you. Thank you all for touching our lives!!
Madelyn Update:
Always keeping us on our toes....she succeeds again. I went to pick her up from daycare on Monday and owner/teacher (I am not going to mention her name) told me Madelyn threw up again. (To update you, Madelyn started throwing up at one week old, due to her cancer. And continued on daily until she was about one and a half yrs old. She has an easy gag reflex, so she still throws up about once a month.) Anyway, the owner told me she had suspected Madelyn of throwing up the past few weeks, but never could find out for sure. I guess the routine is to use the bathroom before they eat. Well, for the past couple weeks, half way through lunch, Madelyn would tell them she needed to go potty. When she would return, she would eat second and third helpings, which shocked everyone with the amount of food she could eat. So on Monday, when Madelyn asked to go to potty, I guess she had that "look" like she was up to something. Another teacher went to check on her. Sure enough, when the teacher opened the door, Madelyn had her head in the toilet throwing up. Yes, my child was purging! What's even more odd, she asked me Sunday evening if she could go throw up because she was so full and wanted to eat more. I told her no, but didn't think anything about it. This is a three year old girl. The owner thinks it's all for attention, but if that's the case why is she doing this secretively and hiding it. I don't think a normal three year old would know purging is not socially acceptable. It's no secret she can make herself throw up whenever she wants, but doing it so she can eat more food blows us away. I called her Dr. and he made us an appt for Tuesday. He said he may refer us to a Child Psychologist or a Dietitian. We have talked to Madelyn about it....she just smirks, acting like it's not a big deal. This is something I should be nervous about when they hit the teen years, not now! I have no idea where she concocted this idea, but I am sure it correlates with her easy ability to make herself throw up. She does keep us on our toes!! (Have any of you heard of this behavior from children so young? Or has any other parent of a child with cancer experienced anything like this?)
I wanted to wish all the Mom's a very Happy Mother's Day!! May your day be filled with lots of love!! ((Sending you all giant hugs!)) And a very special Happy Mother's Day wish to my Mom!! I love you!!
Also, thanks to everyone for wishing Allie a Happy Birthday!! She was SO excited to read all of the messages! Thanks again for making her feel so special and loved!
Wishing you all a wonderful weekend!! Thanks again for all your love and support!! We are truly blessed to have each of you in our lives.
With Love,
Connie and family
Thursday, May 1, 2003 6:58 AM CDT
Happy Birthday Allie!!
Today is your special day!! It also is our special day as well. It was eight years ago that you were born. Your birth filled our lives with so much love, joy and happiness. You have always been such an amazing, smart and beautiful child. Your soft and gentle ways, the care and compassion you have for others, the happiness in your laugh, the sparkle in your eyes, your ability to spread sunshine to others, the curls in your hair and the brightness in your smile are just a few of your attributes that make you so incredibly special!! Allie, today we celebrate with you!! We love you so much!! Thank you for blessing our lives with so many special gifts. Wishing you a birthday filled with love, laughter and lots of fun!
Happy 8th Birthday!!
We Love You,
Mom, Dad and Madelyn
Thursday, April 17, 2003 9:35 PM CDT
We took Madelyn down for another six month check up at Children's Hospital today. We received wonderful news.......Madelyn is still cancer free!!! We are so filled with joy and happiness!! Thank you, God!
I want to tell you about her check up and her day.......
Madelyn weighs 29lbs and is 37¼" tall! She is almost back in the 50% group!! (When she was diagnosed she was in the 50% range. After chemo, she dropped down to the 10%-20% ranges.) It is great to see she is growing beautifully and back on track where she should be. She had her history and physical check up with Linda Madsen, NP. Linda did one of Madelyn's bone marrow biopsy in the beginning and then we saw her on a couple different clinic visits. It has been a while since we saw her, so it was really neat for her to see how much Madelyn has changed.
After the clinic visit, we went to Radiology for her CT scan. Madelyn told us she was kinda scared about the needle (IV) going into her hand. When we got into our room, Madelyn asked every Nurse and Doctor that walked in if they were there to put the needle in. When the one Nurse finally responded with a "Yes", Madelyn jumped up into my lap and put her arm out for the nurse to begin. She was so brave and did not even flinch when the IV went in. (She did have Emla applied 20 minutes prior so it must have helped numb it enough.) She watched them draw blood for her CBC's and then flush the line. After they capped the line, she got down and started playing again. Bob and I had to chuckle at her nonchalant mannerisms......like this is something that happens everyday.
Next, it was time for her CT Scan. We asked the Radiologist if we could try to see if she could make it through without the sedation. He agreed but had the Propofal on standby just in case. Minutes before the scan, Madelyn told me she was really hungry. I told her if she could stay really still for the scan, then we would be able to go eat right away. She told me she wasn't going to move and she just wanted to eat some chicken nuggets. And guess what? She did it!! Even when they added the contrast, she laid very still! We are so impressed how she handles everything!! She is such a brave little girl. And caring and thoughtful too!! After the scan, they kept Madelyn on the scan table, so they could check the pictures. Her body was all buckled in with her arms strapped in above her head. She looked up at me and said, "I love you, Mommy." She truly is such a precious gift!
As soon as we were done in Radiology, we walked over to the McDonalds in Abbott, so she could eat her chicken nuggets! Her little tummy needed some food!! :)
After lunch, she had her Audiogram. She breezed through that too! Her hearing is on the high range of normal!! The Audiologist was very impressed with her attentiveness and vocabulary. The Word recognition portion of the eval is a Kindergarten level and Madelyn scored a 92%.
The Audiogram completed all of our appointments so we went back into the Hem/Onc clinic to get the results. We were able to see her Oncologist, Dr. Nelson. Her blood work came back perfect and the scans remained unchanged and stable!! Madelyn does not have to have anymore scans!! And she only has to go back for the big check up once a year!! We can still send in her VMA/HVA urine tests to check her catecholomine levels. So, Dr. Nelson wants to see her back in August to just have her blood checked. Wooo Hoooo!!
Wow........what a day!! Walking out of the hospital is so much better than walking in. The days prior to her check ups; all the way up to taking the first step back into the hospital, you are filled with a lot of fear, anxiety and you feel acutely aware of the uncertainty of the future. But once you hear those words of "Cancer Free", your body goes through a magical experience. You can finally take a full deep breath of air and exhale. And all those bad feelings are replaced with joy and happiness! What a wonderful feeling it is!!! Even Madelyn had the biggest smile on her face!
A very special thank you to all of you for taking the time to let us know you were praying and thinking about Madelyn and us. Your love, support, and prayers mean the world to us! God truly has blessed us in so many special ways!! Sending big hugs to each of you!! Happy Easter!!!
With Love,
Connie
Tuesday, April 15, 2003 6:08 AM CDT
Hello!!
Spring is here! The weather was so beautiful these past few day! I hope you all were able to enjoy it like we did!! During the weekend, the girls and I spent quite a few hours at the park. Watching them wear the biggest smiles while playing in the sand, or giggling so hard when they were sliding down the slides, was such a heartwarming experience. To see they were completely happy and not a care or worry in the world, just made my face light up. To be young again........lol!
Thursday is another big day for us. Madelyn goes back for another 6 month check up at Children's. We sent her VMA/HVA urine tests in last week, so hopefully the results will be back in time for Thursday. We are also hoping to hear the inactive cancer, that is still present in her liver, has decreased. At her last check up, there was no change to her previous scan. Madelyn is not very excited about going to Children's. (And I don't blame her.) She has been asking a lot of questions or making statements pertaining to her cancer. For only being three years old, she understands so much more about cancer than you could imagine. The things she says out of the blue, makes me wonder if she does remember bits and pieces of her experience. I truly hope not. Please keep Madelyn in your prayers that all of her tests come back great.
Madelyn's funny saying of the week:
Yesterday, her little leg got scratched on a fence. The scratch was very small and didn't bleed, but it hurt. In her sweet little voice she said, "Mom, my leg is busting apart. I think we need to go to the doctor and get me a new leg."
Thank you for visiting Madelyn's site and sharing her journey with us. And thanks again for everyone's love, support and prayers. We are SO blessed to have such loving family and friends in our lives. You have a very special place in our hearts. And thanks for signing the guestbook and leaving the sweetest messages! You really brighten the girls' day! Have a BEAUTIFUL day!!
With Love,
Connie, Bob, Allie and Madelyn
Sunday, March 30, 2003 10:23 AM CST
***I added Madelyn's 3 year pictures to the photo page.***
A Journey of Blessings
The day Madelyn was diagnosed with cancer, our lives changed forever. The normal life we once knew was gone and will never return. The road Madelyn and all of us had to travel to get us to our new normal was not easy. We put our trust in God and we truly feel blessed to be where we are today. As a result of her cancer, our lives have been enriched by so many wonderful people, experiences and lessons of life.
I am sure I could write three separate novels on the people, the experiences and the lessons we have learned. But, for this journal entry, I am just going to share a few examples of how if it wasn't for Madelyn's cancer, we probably would not have experienced the following........
----Meeting Leah, Chris and Christopher. Christopher also had Neuroblastoma. Although our cancer journey has been different, meeting this family was one of the most special gifts we received. We relate on a level where only parents of children who have experienced a traumatic disease or event can understand. The saying...."Fate may have brought us together, but choice made us friends. " applies to our us. My friendship with Leah is a treasured gift that I thank God for her everyday.
----The other day, Allie was outside playing when she came running to me and said, "John Russell was here! John Russell was here!" In the palm of her hand was a heart shaped rock. John Russell was a boy who passed away after a courageous battle with Neuroblastoma. A few weeks ago, we met a very special friend of his, Shannon. Shannon shared the most precious stories about John Russell. She also told us about how he sends everyone "signs" to let them know he is okay. And one of those signs are heart shaped rocks.
----Every time the girls see an angel figurine, they refer to it as their "Angel Sheryl." Angel Sheryl has brought a lot of love and happiness to the girls through her gifts and sweet happy messages. We all look forward to meeting her one day.
----To be a part of different childhood cancer events or activities that have touched our heart and soul so deeply. To name a few: The Neuroblastoma Conference in Chicago, the MN Tree of Hope, Katja Sufka's Cancer Benefit, Children's Hospital's Holiday parties, and CentraCare's pediatric cancer picnic and art activities. Along with the endless Internet sites I have turned to for support: The N-Blast list, the POKWC boards and the Caringbridge pages. All of these sites have families who have experienced childhood cancer. I have shared their joys when their child is declared in remission or reaches a milestone on their cancer journey, prayed for all of them when things went wrong and I have cried many tears when another child dies to this horrible disease. The countless hours I have spent visiting their websites and chatting with them, I feel they are all part of my big family.
----Our lives are also enriched by the people who have never actually experienced childhood cancer, but had their lives touched after hearing Madelyn's story or of other children affected by it. I am presently seeing this through the people I work with, as we plan Katja's benefit. It has been an amazing experience to watch Sandy, Mark and Mark's wife, Kathy and their willingness to give so much to a cause I hold so dear to my heart.
I realize this journey started with Madelyn going through a lot of pain and suffering. It is emotionally painful to think back on those days when she was so sick. But, I find comfort in knowing God saw us through and continues to guide us. And I know God constantly gives us more than we can handle if we desire to grow in Him. I have no idea where this journey will take us, but I am thankful for all the gifts He has blessed us with.
I found a quote in the Candlelighters quarterly newsletter that I wanted to share:
Everybody can be great because everyone can serve. You only need a heart full of grace and a soul generated by love. Martin Luther King.
I know our family is surrounded by great people! A very special thank you to each of you for sharing this journey with us and giving us so much love and support. May God continue to bless all of you!! And may you find beauty in your day!
With Much Love,
Connie
Sunday, March 23, 2003 5:48 AM CST
Happy Spring to All!!
I hope everyone had a great week! The weather is gorgeous here this weekend! It is supposed to be 65º today!! Yesterday, we went for another long bike ride. Allie and I biked a little over six miles! Madelyn was in the bike trailer just enjoying the scenry and the ride. I was so proud of Allie biking that far and she didn't even complain she was tired. Way to go Allie!! Maybe today we can ten miles! >giggle<
Madelyn is going to sleep over at Hannah's house tonight. She has been very excited about her first sleep over party! I know she is going to have a blast. Most of her bags are already packed. And I say most because she is planning to take four or five bags of her baby stuff and toys. She also wants to pack two of her big chairs and take lots of clothes. She is only staying one night, but she might need all these things. And that's according to Madelyn!
We have a lot on our "to do" list today, so I am going to keep this short. Wishing y'all a fantastic week!! Again, thanks for all the love and support you give our family!!
With Love,
Connie
Sunday, March 16, 2003 6:36 AM CST
Welcome Back!
I hope you all are having a wonderful day! The weather has been gorgeous here. Today, it's supposed to be back in the upper 50's. All of snow has melted in our yard and spring fever has set in! Yesterday, I took the girls out for a nice bike ride. When we got home, Madelyn asked me to get her little bike down from in the garage. She was determined to master her pedaling skills on her little bike. It was very precious to watch. She told us she wanted to bike just like Allie.
We got Madelyn's three year pictures taken yesterday. They are so adorable. We will get them back in the beginning of April. Prior to the pictures, Madelyn was showing us the pose she was going to use when she had her pictures taken. She would place her hands on her hips, perfectly tilt her head, bat her eyelashes and get a huge smile on her face. After she was done holding her pose, she would start giggling and giggling. So, when we getting the pictures taken, we asked if she could do her own pose for the last shot....and it turned out to be one of the cutest pictures. It's a perfect picture of Madelyn being Madelyn.
After pictures, we also got her ears pierced. She has been telling me she wanted them pierced. I always told her no...she had to be four years old. When we were in Claire's, I asked her if she wanted them pierced. Of course she did! She picked out her little flowered earrings, sat on the chair and was so brave when the lady pierced them. Not a tear was shed. She acted like the little pain she felt was worth it, as long as she could have earrings in her ears. She loves them and they look very cute! We found her in the bathroom mirror quite a few times yesterday, admiring her new look. (giggle)
Allie enjoyed her week off of school. On Friday night, we sold Girl Scout cookies at a local college, for her troop. She had a lot of fun just being with her friends. She also spent three days at her daycare center. It was her last official time of going there. Allie will be turning eight soon, so she can no longer go there. She brought everyone treats and said her good-byes. She was sad when I picked her up. Poor girl! She has been going to this daycare since she was two years old. But, she knows she will still see the staff and kids because Madelyn is still there. So, that makes it a little easier.
Madelyn's cute saying of the week:
Ahhh....not really!
When we ask her a question, if she wants us to laugh, she will say, "Ahhhh...not really." For example, if we asked her if she is having fun playing with her dolls.....she replies, "Ahhhh....not really." It is very funny and cute. She is a silly little girl.
Madelyn's next check up is scheduled for April 17th at Children's.
Wishing everyone a wonderful week!! Thanks again for all the love, support and prayers!! And thanks for joining us as we continue on our journey. ((Hugs))
With Much Love,
Connie, Bob, Allie and Miss Madelyn
Monday, March 10, 2003 5:58 AM CST
Good Morning to All!!
Yesterday, Madelyn, Allie and I were blessed with the opportunity to meet Shannon, who is a very special friend of John Russell's. John Russell also had Neuroblastoma Stage IV and after a long courageous battle, he passed away Sept 02. Shannon was a nanny for John Russell when he was an infant/toddler. Shannon shared stories and pictures of John Russell....and you could feel the love that these two "bestest" buddies had and still have. John Russell loved tractors and always had the most precious smile to match his sparkling blue eyes. Although we only met for a little over an hour, I walked away cherishing the meeting. Heaven did gain an Angel when John Russell passed away, and I know Shannon is our earth Angel. She is an amazing woman with heart of gold. Listening to her, she has that same "calling" I feel.....that our lives have been deeply affected by childhood cancer....and we need to get more involved. When a child is diagnosed with cancer, it touches everyone. Like I said, Shannon is amazing......and I truly know John Russell and her were blessed to have each other. John Russell continues to live on through her.
Here is John Russell's website: www.caringbridge.org/page/johnrussell
We are all doing good. Just waiting for spring to arrive. It's cold here. I will write more soon.
Madelyn's funny saying for the week. (She picked this one up from the Oswald cartoon:) She uses the cutest hand gestures when she says it.
"I want two marshmellos! No more! No less!"
Leah, Chris and Christopher are in Florida on their Make-A- Wish vacation. I am sure they are having a wonderful time.
***Prayer Request*** Please keep Katja and her family in your prayers. Katja, who was in remission from AML for a year and a half, relapsed last week.
Here is her website: http://www.caringbridge.org/mn/katjas/
If you get a chance, please leave her a little message too. I know they all will love it. Thank you very much!!
Thanks again for all the love, support and prayers. Have a wonderful week!! May God Bless each of you!!
With Love,
Connie
Sunday, March 2, 2003 6:31 AM CST
Welcome Back to Madelyn's Site!!
Madelyn went in for her annual check up this past Thursday. (Well Baby/Child Visit) She weighed 28 lbs and is 37 inches tall! She is still a peanut, but is growing beautifully. Madelyn also did excellent on her developmental testing. She breezed through the three year old level test, so they gave her the four year old one. The only thing she could not do is hop on one foot. It warms our hearts to know she is above the developmental testing standards. With all she has been through, and the side effects of the different types of chemo, she continues to amaze us. One thing that was different about this visit is she did not have any blood tests. She kept saying she was so happy she did not get any "pokes" or shots. She has her next check up with her Oncologist at the end of this month.
Yesterday, Allie's friend, Amanda, came to our house to play. They all were playing babies and house. Madelyn told the girls her baby had cancer and needed to go to the doctors. Allie then said, her baby had cancer too. Amanda looked so puzzled and said, "Why do your babies have cancer?" Madelyn said in the cutest voice, "Cuz I had cancer." And off she went. It made me think.....these two girls play babies almost every day. And they always play that one of the babies has cancer. Even their stuffed animals, toy horses, Polly Pockets, American Girl dolls and on and on seem to have cancer when they play with them. I never really thought much about it until yesterday. Most kids at this age have little or no knowledge of cancer. Yet, Allie and Madelyn find ways to relate their cancer experiences in everything they do. I guess this is another example how cancer changes and impacts lives and so the journey continues....
Allie and I are flying out to California today. We are so excited to see my Mom and Richard!! It is supposed to be in the 70's today. And the high here in Minnesota is supposed to be 7! Perfect time to leave!! giggle
I found this poem posted on our POKWC message board. (POKWC stands for Parents of Kids with Cancer) I thought it was beautiful and wanted to share it with you.
God has not promised skies always blue
Flower-strewn pathways all our lives through.
God has not promised sun without rain
Joy without sorrow
Peace without pain.
But God has promised
strength for the day,
rest for the labor,
light for the way,
grace for the trials,
help from above,
unfailing sympathy,
undying love.
Kristone
Before I close, I want to wish my brother Tom, a very Happy Birthday!! Tom, you are such a special brother to me. You are one of most loving, compassionate, genuine and sincere people I have met. (And you have the best sense of humor too!!) I truly feel blessed to have you as a brother, as well as a friend. Wishing you a Happy Birthday!!
Thanks for all the love, support and prayers! We are blessed to have you all in our lives. May God continue to bless each of you!
Have a great week!
With Love,
Connie, Bob, Allie and Madelyn
Wednesday, February 26, 2003 5:40 AM CST
I just wanted to type a quick update since it's been a couple weeks since my last entry.
Madelyn is doing good! Well, she is doing a lot better then last week. Her cough returned in full vengeance so her Pediatrician put her on Prednisone. Since then, she is doing great and her cough is almost gone!! Madelyn continues to be our families comical relief act. She saw a commercial on the television recently with a jingle containing the words... "Anything you can do, I can do better. No, you can't! Yes, I can." She is all about timing........and when the situation fits for her to use this jingle......she starts singing it. For example, a few nights ago Allie, Madelyn and I were playing a game of CandyLand. I am sure most of you remember what at a difficult and challenging game it is....(giggle).....well she beat us all! And as soon as she won, Miss Madelyn started singing the jingle and doing her little dance! It was quite funny! She also sings the song out loud to herself.......and by the fifth round of "No, you can't! Yes, I can!" she is literally screaming. She is such a fun little girl to be around.......because you know sooner or later, she will say or do something just to make everyone laugh.
Allie is doing wonderful as well. We are enrolling her in one of the local youth soccer leagues today. This will be her second year playing. She did so good last season and had a lot of fun. She is looking forward to playing again. We are going to be signing her for tennis lessons too. Her best friends Mom and I talked about it and decided to sign them up for it, since they wanted to play. It should be quite entertaining watching them play doubles!! They are so silly when they are together. I know those two will have a blast!!
Speaking of having a blast, Allie and I are flying out to California this weekend to visit my Mom! She already has her luggage packed! I am really looking forward to spending some special "Mom and Daughter time" with her. She truly deserves it and honestly needs it. So, I am going to pamper her every step of the way!! And yes.......it probably will be a lot of work walking to my mom's pool......but I think I can somehow can manage taking her a few times a day..... for some swim time! (big giggle) I am confident the weather will warmer than it is here in Minnesota! It's freezing cold!!
That's about all I have for the updates. We seem to be constantly on the go around here. It must be too early in the morning to remember everything that has gone on. lol I just wanted to say we all are doing great! And we hope the same for all of you!!
Oh........I wanted to let y'all know, Leah and I will be adding the pictures from the Tree of Hope ceremony to the other website. (www.treeofhope.org.) Leah's son, Christopher, will be taking his Make-A-Wish trip next week!! They all are going to Disney World and will be staying at Give the Kids the World!! Wishing them the best vacation imaginable!! I know they will have fun!! Once they return, we will update the site!
Thank you for visiting Madelyn's page and being part of her journey. We appreciate all the love, support and prayers........and would not be where we are today without you all in our lives. We truly are blessed!! Thanks again!!
I am dedicating this journal entry in Memory of Tristan Warrington. Tristan, who just turned one last month, passed away on Saturday after a battle with Rhabdoid Brain Tumor. Please keep this family in your prayers. http://www.caringbridge.org/mn/wiggles ((Thank you.......I am sure this family appreciates it.))
Have a wonderful weekend everyone!!
With Love,
Connie, Bob, Allie and Madelyn
Thursday, February 6, 2003 6:02 AM CST
Hello Everyone!
Sorry for the time lapse between entries. We have been very busy. I hope y'all are doing great! I will give you an update on us and things that happened since my last entry.
Madelyn is doing good. She had her birthday on the 13th of Jan so now she is officially three years old. Just singing the birthday song to her, her eyes lit up and her face showed how magical birthdays are to young children. The memory of that is priceless. I took her into the doctor on Tuesday for a bad cough. They said she has asthma. We have been giving her neubulizer treatments and what a difference it has made. She can finally sleep through the night. Allie has a very mild form of it and only is present when she gets a cold, so we are hoping the same for Madelyn. (She weighed 27 lbs at this visit.) She has her first Dentist appointment on Friday. She is very nervous about this. Her cousin Hannah calmed her down yesterday by telling Madelyn about her dental experiences. Hannah is three yrs old...so they had a grown up discussion of dentists. It was very amusing.) Madelyn also has been busy with the computer. She loves to "try" to navigate herself to Nick Jr. Surprisingly, she has found it a couple times. She knows she has to click on Allie's icon, click on the web, go to her favorite places.....and find Nick Jr from there. It's like everyday she learns something new on these computers. Maybe next month, she will take over this journal. (big smile)
Allie is doing great. She is growing up before our eyes! She is doing good in school. Math is a challenge for her, but she constantly wants to challenge herself with it. As I mentioned before, she is in Girl Scouts. She received her first four badges for being a Brownie. She was very excited to get them. She also sold cookies this year. We are very impressed.......she sold a total of 125 boxes! Way to GO ALLIE!! Her personal goal was to sell 57 boxes when we started. Since we were leaving for vacation, I really didn't know if we could pull that off since we only had a week to sell them. She met her goal and then some! Thank you to all the family and friends who bought them! (I promise next year we won't knock on your door at 3am asking you if you want to buy cookies! big chuckle!)
Bob and I just returned from our vacation on Monday night. We went to Punta Cana. (The girls stayed at home with my niece, Angie. A big special thank you to her for all the love she gave them during our trip! They love you so much!! And so do we!!) Our vacation was a dream come true. The hotel was very nice and the beach was beautiful! The sand was very white and the ocean was a breathtaking color of blue. There was a reef right in front of our beach, so we snorkeled out to it quite a few times. We took some bread out to feed the fish.....that was amazing. Even after the bread was gone, all these fish still followed us around, even when we were swimming into shore. Very Cool! We did a lot of swimming, kayaking, paddle boating, snorkeling, sunbathing, relaxing and laughing. It was perfect! The hotel we stayed at was an all inclusive. All our drinks and food were included...so we did live that up too! We met Tim and Becky, a couple from St. Peter, MN, who made our vacation even better! We spent the entire week with them and we feel very blessed to have met them. They are an amazing couple and a lot of fun to be with. George Carlin has a saying, "Laugh often, long and loud. Laugh until you gasp for breath." Being with Tim and Becky......we accomplished that many times. A special thank you to them for all the laughter and fun they added to our vacation!
A special thank you to Angel Sheryl for all the special things she does!! You truly are an ANGEL!! ((Sending her BIG HUGS))
And thank you to everyone for all the love, support, prayers and friendships! God truly has blessed us and enriched our lives with the most loving people. Thank you again!
***Please say a prayer for a very special lady, Bette Jo, who is battling cancer. Thank you!***
With Love,
Connie, Bob, Allie and Madelyn
Monday, January 13, 2003 at 06:51 AM (CST)
Happy 3rd Birthday, Madelyn!
We love you SOOOO much!! We hope your birthday is filled with lots of love and laughter! Thank you for touching our hearts and teaching us so many lessons of life!! You are an inspiration to us! May God continue to bless you every single day!!
We Love You!!
Mom, Dad and Allie
My friend Cheri wrote a poem for Madelyn's first birthday, I thought it would be great to share the poem today.
A year ago the blessings flowed
Madelyn just seemed to glow
A perfect baby born that day
A gift from Heaven came our way
We celebrated her day of birth
All happiness and playful mirth
And then God sent a raging storm
Clouds and thunder and lightning formed
It was so sudden and so fierce
Sadness in our hearts it pierced
This baby child caught in the rain
What could be done to ease the pain
And then God whisked the clouds away
A gentle breeze broke through the day
Madelyn so small yet stron
Weathered the storm 'til it was gone
A tiny miracle of life she holds
In all our hearts it will unfold
Let's celebrate her first birthday
With joy and laughter all the way.
Written by Cheri Leonard
***The Tree of Hope Ceremony was so beautiful and truly a very touching event. I will update more about it soon.
Again......Happy Birthday Miss Madelyn!!
As you refer to us now........
Your Buddy Boy, Your Sugar Mama and Your Lexi Bird
Dad, Mom and Allie
Monday, December 30, 2002 at 08:59 PM (CST)
Happy New Year!!
I hope everyone had a wonderful Christmas! I just wanted to write a quick update on the family.
We had a great Christmas! Still trying to find some time to relax after all the hustle and bustle of the holidays.
I do have to tell you a cute story about our Christmas Eve. Right before we were going to unwrap our presents on Christmas Eve, Santa Claus showed up at our house. The magical look in Allie's and Madelyn's eyes; is a memory to be cherished forever. Allie ran right up to him and gave him a hug. Not Madelyn! Madelyn was so scared of ol' Santa. He had them sing a song, then passed out their gifts....and had them sing another song before he rushed out the door. Santa was only gone for about one minute when Madelyn announced, "I like Santa. I am not scared of him!" We all started cracking up because just a minute before that, I could not pry her from me." I asked Madelyn if she really liked Santa and she quickly replied, "Yes, but I am not going to sit on his lap next year!" She is our comedian!
Allie still has a few more days off of school. She is really enjoying the winter break. She has had about three girlfriends come over during the days and play with her. She really enjoys that......plus it helps with the boredom that sets in. She received a lot of beautiful gifts for Christmas.......so they are keeping her busy too.
Madelyn was sick last week with the flu. She is back to herself, thankfully. Her new toys have been keeping her very busy. She loves playing house with her new baby dolls. It's very cute!
Bob is doing great too. He is upstairs reading as I type this update. About a month ago, he bought five new books to take on our vacation......but he could not look at them anymore. I think he only has one book left to read! giggle!
I still have been doing a lot of work for the MN Tree of Hope. I wish you all could see the tree! It's gorgeous! We have almost 50 ribbons on the tree with the most precious dedications. Every time I look at the tree, I get tears in my eyes. It truly is amazing. We have the tree lighting ceremony on Jan 12th from 1-4. I hope some of you can make it! It should be a beautiful ceremony! (PS...if you know any families in MN with a child who has or has had cancer and they would like to honor their child with a ribbon, they can visit our website at TreeofHope.org. (We also are listed on the St. Cloud Hospital Website. Plus a few newspapers printed our story! I am glad the word it getting out because I know there's a lot of families out their that have no idea about it. Thanks!)
I just wanted to wish you all a very Happy New Year! May the New Year bring peace, love and joy to each one of you. May God watch over you throughout the year and may the light of his blessing shine on you. May he protect you with his love and guide you with his fortitude.
Thank you for all the love, support and prayers you have given our family. We are so blessed to have you in our lives. Thanks again from the bottom of our hearts! God Bless you! Sending you all big hugs!
Happy New Year!!
With Love,
Connie, Bob, Allie and Madelyn
Tuesday, December 24, 2002 at 06:39 AM (CST)
Happy Holidays to All!!
Sorry it has been so long since my last entry. We have been very busy around here. (I am sure like everyone else too! giggle)
I just wanted to wish everyone a very Merry Christmas and a Happy New Year!
We are so blessed to have you in our lives. May God continue to bless you and be with you. A special thank you to all of you......your love, friendship, prayers, and support will always be cherished. Thank you for touching our lives! Happy Holidays!! Sending y'all big hugs!
With Lots of Love,
Connie and Crew
Wednesday, November 27, 2002 at 3:12 PM (CST)
Thanksgiving Greetings to All!
It has been a while since I last updated. I have been meaning to get back to the site to give a brief update. Madelyn and Allie are doing great. They are very excited about Thanksgiving dinner and visiting with family. (Oh...and the wishbone!) We are having family members come to our house tomorrow. And, Bob is doing all the cooking tomorrow.....so I am excited as well. (giggle)
Please check out Leah's and my new website. (www.treeofhope.org) We have been talking for months about starting a Childhood Cancer organization here in Central Minnesota..........and we are doing it!! We are so excited! Our first project is the Tree of Hope. We are honoring all the children in the local area who has or has had cancer by placing a gold ribbon with their name on the tree. And on Jan 12th, there will be a tree lighting ceremony. So, if you know any child who has or has had childhood cancer from the Central Minnesota area, please send them the link to our website. We want every child who has had to deal with cancer to be honored.....because they are our heroes!! And if you get a chance, please stop in at Centra Care Clinic and see the tree. (It is in Woodland entrance.....by the Pediatric Specialty Clinic) If you have any questions about this, please feel free to email me.
A special thank you to our family and friends for your continued love, prayers and support. We are so thankful to have you all in our lives. And we thank God for enriching our lives with you all! God Bless You All!!
Wishing y'all a very Happy Thanksgiving!
With Love,
Connie, Bob, Allie and Madelyn
Thursday, November 07, 2002 at 10:37 AM (CST)
Hello Everyone!!
As you can see, I added Madelyn's mini movie to the main page. I made one for Allie too. I wanted to include Allie's on the website and didn't know how I could add her's......so I put it in the guestbook. Please check her's out too. I had so much fun making these "movies." I hope you enjoy them. (Let me know what you think!) I did want to mention, Zeocast is the site I used to create these movies. I wish I could remove the advertisements from the bottom of the pictures. Sadly, I can not. So, when watching these, just ignore the bottom! (giggle)
The girls are doing great. They had a blast trick or treating. We only went to about 15 houses right around our neighborhood. It was a very cold evening, so 15 houses were enough. Plus, Madelyn was not feeling very well. She is getting her two year molars in, so we thought they were causing her the fevers. (Plus, she kept saying her mouth hurt.) I took her into the Doctor to find out she had strep throat! So, she is now on antibiotics. She is feeling wonderful now!! Today, we are going to make "leaf" houses in the backyard. It is very beautiful outside! Enjoy your day!
Thanks again to for all the support, love and prayers. You all mean the world to us!! Sending y'all special cyber hugs!
With Love,
Connie
Thursday, October 24, 2002 at 11:39 AM (CDT)
Hello!!
It is another chilly morning here in Minnesota! Our ground is still white. Or I should say white with a lot of greens, browns and oranges. Our trees still have a lot of leaves on them. So gradually, they are descending and decorating the top of the snow. I do hope it warms up enough so we can get rid of all the leaves. Otherwise, we will have a big mess next spring. And if not, we will deal with then. I am not too worried.
This taste of cold weather has really made us excited for our winter vacation. We are going to Punta Cana in January. Unfortunately for the girls, they will remain at home with my niece. As most of you know, last January, we went to Puerto Plata. We had such an awesome vacation and met a lot of wonderful people. We heard the beaches in Punta Cana are spectacular, so we are very excited about going there. Hopefully, we are able to get a lot of snorkeling time in. I also would love to try to scuba dive down there. We will see. We would love to hear from anyone who has been to Punta Cana and what they thought of it.
Halloween is right around the corner. The girls are very excited about wearing their costumes and trick or treating. Allie is going to be a Monarch butterfly and Madelyn is going to be a giraffe. I was impressed with Allie's selection of the butterfly costume. Prior to the beginning of this school year, Allie has had a fear of butterflies. In school, their class had the opportunity to rear about 50 butterflies. She was able to overcome her fear and she is actually excited about catching butterflies next summer. YEA!! I am so proud of her! The Monarch costume is very simple, but also very cute. Madelyn also picked out her own costume. As soon as she put it on, she said, "Oh, it's adorable." (Which is her favorite saying lately. Everything is "so adorable".) lol! Yes, it's precious!
Sheryl, thanks for the very cute ghost graphic you added to your guestbook entry. Madelyn loved it!! And I can't wait to show it to Allie after school! In case y'all didn't notice, Sheryl adds the cutest graphics to her entries. I have no idea how she does it either. lol
**Special prayer request for Barb, who is truly like a Mom to me. Please pray for a speedy recovery after a very scary ordeal she went through last week. Thanks!!
I can't say this enough, thank you to everyone for all your love, support and prayers. God has truly blessed us.
With Love,
Connie, Bob, Allie and Madelyn
Tuesday, October 22, 2002 at 02:03 PM (CDT)
Hello!
Last night, Allie and Madelyn wanted me to read the guestbook entries to them again. After reading Bekki's entry to them, I decided to copy it and post it as a journal entry.
Little Miss Madelyn..I missed her entry into the world on January 13, 2000. I will never forget the heart breaking phone call on May 9th, the fear in my sisters voice, all the questions running through my mind, how can this all be happening to our little Madelyn. There was no way I was not going to be there for Madelyn's surgery. The hours of sitting there the hardest, the unknown, their minister there for all of us. I will have to say Madelyn's ongologist made a huge impression on me, he was the only doctor that came in and gave us updates during the surgery, which was very comforting. When he told us how big the tumor was I was totally shocked. How could anyone so little have a tumor the size of a baseball inside their little tummy. When we were finally allowed to go and see her in the intensive care unit the feeling cannot be described....so tiny...so loved....and what a fighter she was. I was so relieved to see her alive and hopefully on her way to good health. I can not even begin to imagine what Connie and Bob were feeling throughout everything. When I got home I called all the prayer lines that I could find in Sioux Falls and then turned to all my internet friends to ask them all to pray for Madelyn, as well as Connie, Bob, and Allie. Madelyn needed the prayers to heal, they needed it for the strength. The outpouring of love and prayers was incredible. To this day I am asked how she is doing. I am so thankful that I get the opportunity to watch my Godchild....my niece grow up. She is truly a miracle! I love you Miss Madelyn....I love you Allie, and I love you Connie and Bob...I am blessed to have you all in my life.
Bekki Knaus
Bekki, all my life, you have been so much more than just a sister to me. Our bond is very strong and truly amazing! You have always been there for me and for us as a family. You are a phenomenal woman! Thank you for everything! We love you so much!! (And your beautiful children!) I can't wait to see you next week!! All our love to you, Bekki! (And for anyone wondering about Bekki missing Madelyn's birth, we had a snowstorm the night before I was induced. So, the roads were too dangerous for her to travel on. But, she came the following day, which still meant the world to us!)
And thank you to every one else too!! All the continued love and support for our family is amazing. We are so blessed!!Have a wonderful day!!
With Love,
Connie, Bob, Allie and Madelyn
Thursday, October 17, 2002 at 10:49 AM (CDT)
Snow.....
Yes, it is snowing here in Central Minnesota! I am shocked because it's only October 17th. Way too early for winter! (And most of you know, I am not a big fan of Old Man Winter.)
I told Allie and Madelyn to look out the window....and once they realized that it really was snow coming down, they ran to the closet to get their boots, hats and gloves. Allie has two friends over today.......so I bundled all the girls up and out the door they went, to play in the snow. They played in the snow for almost an hour. It was so much fun seeing the smiles on their faces and hearing the sweet sounds of their laughter. They were so happy to throw snowballs at each other and just dance around in the snow. Ahh...it brought back a lot of happy memories of my childhood when I actually enjoyed snow. Playing outside with my siblings and friends. I really did have a blast. Maybe this winter, I will give the snow another chance and try to recapture the feelings I once had.
Wishing y'all a very lovely day. May you find something in the day, that takes you back to your yesterdays, and warms your heart and soul too.
God Bless you!
With Love,
Connie
Wednesday, October 16, 2002 at 05:45 AM (CDT)
Hello to All!
I hope everyone is doing great. The weather here has really cooled off. And most of you know, I am not a fan of the cold. lol! I can't believe it's already the middle of October. Where did the time go?
Last night, Allie had a school roller skating party at a local skating rink. We decided to take Madelyn along with us. As soon as she got there, Madelyn wanted a pair of roller skates on. It was the cutest thing seeing her trying to skate. (We always held on to at least one of her little hands.) She had the biggest smile on her face. Allie can skate fairly well.......so she was off with many of her friends. The whole time, Madelyn kept screaming, "I gotta show my Allie how I can roller skate." So, we would show Allie, who would quickly tell Madelyn how proud she was of her.........and off Allie would go again. Bob was so sad when he asked Allie if he could skate with her.......and she said no. She only wanted to skate around girls. I am sure most of us remember when we were kids, and hanging out with parents was so uncool. lol! I think that was our first real taste of it. (Well, his for sure. She wanted to skate with me and even asked to hold my hand. I am sure my time will be coming.) giggle!
Have a great day!! Bundle up and stay warm. Wishing all of you the best. Thanks for all the love, support and prayers. And thanks for continuing this journey with us. God Bless you all!
With Love,
Connie
Friday, October 04, 2002 at 04:26 PM (CDT)
Hello!!!
Sorry it has taken me a few days to get back on this site to give you an update. I just got off the phone with Madelyn's Nurse Case Manager to give me the final readings on all of her bone scan/CT scan and urine tests. Madelyn is doing great and all of her tests came back normal!! WOOO HOOO! We did know the preliminary results before we left the hospital but it is still nice to hear the final results.
Okay, I want to share a few things that happened when we were down at Children's on Tuesday. Before I begin to tell you about our frightening experience, which turned out to be nothing,....I have to brag about Madelyn for a minute. First, Madelyn is one brave child!! She handled everything better than I would have myself. She knew she was going to be "poked" with a needle, but I really prepared her on what to expect. Her only concern was that I hold her hand. Well, when we walked into the bone scan room, they told me to have her lie down on the table. (I told her that she would sit on my lap when they did this.) I asked the tech if she could have her sit on my lap and she said no. I could tell Madelyn was really tensing up at this point, but did not cry. So, when we laid her on the table and they put the needle in, she only had tears rolling out of her eyes, but not making a sound. I told her it was okay to cry but she refused to. The only thing she said was, "It hurts, It hurts, It hurts." Well, when I looked down, I could see the needle was not in right. So, they removed it and called a nurse in to try again. I felt so bad that she had to go through yet another poke....but she didn't seem bothered by it. When the nurse came in, she told Madelyn she could sit on my lap. You could feel the tension she had, just leave her little body. She was so calm, didn't shed a tear and watched it all! I was so proud of her! What a trooper! And to show you how sweet she is, when they were giving her stickers, she asked if she could have another one for "My Allie." Isn't that sweet? Bless her heart! The whole day, she "collected" stickers for "her" Allie, just to make Allie happy. And they were all hand picked by her, with Allie in mind. She told the one nurse, "My Allie likes Barbie stickers." So, they found a barbie sticker for Allie. She is all heart! Oh, this is wonderful news too!! Madelyn made it through her bone scan and half way through her CT without sedation!! (The Nurse and Dr. thought because she was so calm and articulate, she would be a great candidate to try without sedation.) I was SOOOO excited! Mind you, the bone scan alone is an hour long. She was so brave and patient with everything. Initially, she didn't want to do the CT scan but we talked her into it without sedation. When they were trying to put the contrast in her IV (they were halfway done with it) she started wiggling and tensing up, saying that she wanted to go home. The tech told us he needed to sedate her, since they only have one window of opportunity, and if she would move with the contrast in, we would have to come back another day. Plus, when they put the contrast it, it gives your body a warm tingly feeling, and a weird taste in the mouth. So, we agree to have her sedated. They used Propofal. (Spelling?) She did great with it. I was so proud that she made it though as far as she did. Maybe next time, she can make it the entire time without it. But, if not, that's okay too. Way to go, Madelyn! You continue to amaze us!!
Okay..now onto the story of our VERY STRESSFUL day! She had her bone scan first. When she was having it done, the lady kept going back over (scanning) the mid section of her body. They even turned her onto her tummy....which is something I have never seen. (Because the machine moves above and below the table.) When they (the bone scan techs) stepped out to have the radiologist check them, I told Bob I suspected something was wrong. I am not an expert on bone scans, but I have seen the scans done too many times and know how it is done. Plus, two interns came in when they were reading her scans. The interns were sitting in front of the scan screen, and they started whispering and pointing. At one point, one of the techs came in and pulled up one of her previous scans on the computer and sent them to the radiologist. Bob still said, they are just comparing. But, I could just feel something was not right. Well, the techs came back in about 20 minutes later....and said they needed more scans. My heart started hurting. I asked them what was going on. They said they found some activity on her pelvic area and needed more scans. I felt sick to my stomach! They did some more scans.....and about a half hour after that, they released us to go to her CT scan. (Mind you a bone scan is only supposed to be a hour....we were there two hours!) We got half way through her CT scans and I noticed one of the other oncologists (a complete different one then our primary and secondary Oncology Drs.) watching Madelyn's scans on the screen. By this time, Bob and I were about to start crying. After the scans and a short stay in the recovery room, we raced up to the Oncology office. Right when we walked in, we ran into our primary oncologist. (He was doing rounds on the floor....so we were seen by our back up Onc. Dr.) So, he comes up to us and said, "I heard you had some problems with the bone scan." We said yes. He said that he would be in to talk to us about it and he would figure it out. Our hearts hurt a little more.... So, they took us to an exam room to wait to talk to the doctor. Well, about a half hour of waiting, her back up Dr. came by and told us she hadn't heard anything on the scans and she was going to call to find out the preliminary reads of them. I guess she could tell by our faces something wasn't right. Bob told her we were freaked out by the bone scan. She left and came back out of breath to tell us it was normal. I guess what happened was this: somehow a drop of the nuclear contrast they inject her with got onto her skin, in that area. WOW.....what a relief. We already were on stressed out to begin with, so that coupled with what went on in the bone scan, it was like we were fighting for a breath of air. It is a feeling I don't want to experience again. I thank God it was nothing and everything turned out wonderful. And although we were so scared, we both could feel God's presence with us, letting us know regardless what the outcome was, he would see us through. And he did.
Since she is two years off treatment, her protocol calls for annual scans with every six month visits. However, since her inactive cancer, that remains in the liver, did not change...(no decrease or increase) he wants to keep her on six month scans at least another year....or longer. Which is perfectly fine with us!
Oh, she weighed 26.1 lbs and is 34 1/2 inches tall! Growing beautifully!!
Sorry this is SOOO long! Thanks again for all your prayers, love and support!! We love you all!! And a very special thank you to God, for blessing us with each and every one of you!! We are truly blessed to have you in our lives!! God bless each of you! Enjoy your weekend!!
With Love,
Connie, Bob, Allie and Madelyn
Monday, September 30, 2002 at 07:43 PM (CDT)
*************I posted new pictures!**************
Fear
Looking at Madelyn, you'd never know she was sick a day in her life. But, the sad truth is she has been sick too many days in her two and a half years of life. Yes, she is cancer free and I pray she never has to experience cancer again. I remember how patiently I waited for the call from her Oncologist to tell us Madelyn was cancer free. I thought once I heard those magic words, the entire experience would be behind us. How ignorant I was. Little did I realize at the time, this is something you can't tuck safely away in a box and forget about it. I wasn't that ignorant where I thought I could go on living like nothing ever happened. But, I didn't realize cancer would consume so many of my thoughts, everyday! I think people would be very shocked if they really knew how much time, everyday, I spend thinking about cancer. Not only Madelyn's experience and so many other children battling it, but also the fear of Madelyn's cancer ever reoccurring. Prior to her diagnosis date, I thought I was standing on very secure ground. And then when they told me she had cancer, it was like they pulled the rug from under my feet. And what a painful fall that was. The pain of that fall is so fresh in my mind. And the reality is, I will always remember that pain. I trust and pray that time will continue to help heal and make the “wounds” not as sensitive to the touch. But, right now, these wounds still are very sensitive. Madelyn was almost taken from our lives, and that alone scarred us deeply. I could not imagine life without her. My heart just breaks for the parents who lost a their child to this monster. I should change that and say losing a child in general. Losing a child has to be the most painful life event to deal with. I cannot even begin to imagine living without either of my girls. And that's why I thank the Lord everyday for them!!
Tomorrow morning, we return to Children's hospital for another six month check up. In my heart, I know everything is going be great and she will continue to be cancer free. But, I still am filled with fear. Every time she has an unexplained fever, throws up for no reason, sweats profusely when it's chilly, cries uncontrollably, says her tummy hurts and she doesn't sleep.....I should think these are all normal things that happen to kids. But, now that I have had experience of being a Mom to a child who had cancer, my first thought is never to think of these as normal. And that is where the fear sets in. I can never forget all the symptoms she displayed prior to diagnosis, so each time I see symptom, my first thought is always "Oh God, please no, not cancer." So, tomorrow, they will run every test again to confirm that she is still a very healthy and normal little girl. And the fear will be gone temporarily.......until she gets a fever or complains her tummy hurts. Like I said before, I pray in time this fear will disappear. It's always the hardest for us right before her check ups......and once we hear the magic words, it feels like a ton of weight is lifted off your shoulders;
allowing you to finally take a deep breath again. Fear......it stinks.
Thank you all for your love, support and prayers. And thanks for sharing this journey with us. You all are so special to us. And thank you for taking the time to sign Madelyn's guestbook. The girls' love the sweet messages. (A big thank you to Chemo Angel Sheryl who adds the cutest graphics! Madelyn goes crazy over them! giggle!) We are so very blessed to have you in our lives. May God bless you all!!
Please say a special prayer for Madelyn that all of her tests come back great. (Thank you!)
With Love,
Connie, Bob, Allie and Madelyn
Sunday, September 22, 2002 at 06:45 PM (CDT)
Hello!!
I hope everyone had a wonderful weekend! It was quite chilly here, so we did not do much. Plus, I had to work all weekend. I am off next weekend so we are planning a short day trip on Saturday.
When I started this site, I wanted to go back and share Madelyn's journey of having cancer and now being a cancer survivor. As you can see, it is not in any chronological order. I apologize for that. (I really don't think Madelyn minds either! lol) One of the first few entries I wrote was about the day she was diagnosed. The entry ended with us going to Children's Hospital. So, for the next few entries, I am going to share the first few days of Madelyn's hospital stay and surgery. (I kept a journal during that time so I will be copying a lot of what I wrote at the time.)
May 9th
Only a couple hours after hearing the heart breaking news of Madelyn's cancer, we arrived in a daze, at Children's Hospital. As soon as we stepped foot on the 8th floor, I truly knew this was the starting point of our new journey, of having a child with cancer. The nurses greeted us within seconds, for they were expecting us. They helped us get settled in Madelyn's room. It amazes me how every single nurse we have talked to offers so much love and compassion, not only to Madelyn, but to us as a family. Soon after our arrival, we met her Oncologist, Dr. Nelson. We hand carried Madelyn's CT Scans, so as soon as he came into her room, he started reviewing the scans. He told us he believed she had a type of cancer called Neuroblastoma. I remember hearing the word, thinking the word itself is so large, it sounded very intimidating and quite frightening. I am sure he could sense our fear, what parent would not be scared. But, he maintained such a positive demeanor the entire time, and reassured us her cancer is very treatable for a baby her age. I knew Madelyn was in great hands immediately. Dr. Nelson was patient, gentle, loving, knowledgeable, optimistic and exhibited a reverence for Madelyn and her cancer. Madelyn could sense it too, she gave him a big smile. God blessed us with Dr. Nelson.
The only tests they ran on her were blood and urine. The urine test results will take a couple days to get back. The rest of the afternoon and evening was filled with many phone calls, a few visitors, a lot of worries and even more tears. We are so scared but I know God is there.
May 10
First thing this morning, Madelyn was sedated so they could run tests. They did full body scans (x-rays), CT Scan and a bone scan. In the early afternoon, a surgeon stopped by our room. From the minute he rushed through the door, we didn't have a warm feeling about him. We felt he was "cold" and not very compassionate. He was direct and to the point, not really allowing any time for questions. He may have been the most skilled surgeon but it would have made us feel a lot better if he would have been more empathetic of our situation. This was a new journey for us, and we had many questions and concerns. He was paged and he left as he entered her room, in a big hurry. It was during Madelyn's CT Scan, we met Dr. Anderson, (Surgeon) who was now taking over her surgery. (We were told the other surgeon had another operation come up and would not be able to perform her surgery. Sad to say but we really felt relieved.) Both Bob and I knew from the first minute we met Dr. Anderson, he was the best for Madelyn and us. He gave us about an hour of his time, patiently explaining everything in depth, what to expect prior to surgery, the procedure itself and what to expect after. (He used Madelyn's name over and over, where the other surgeon only referred to her as "the baby.") He showed Bob and I all of her x-rays and scans, carefully explaining how in some cases, they are unable to remove the entire tumor. And told us the process if he was unable to remove it at that time. Listening to him speak, you instantly realized his passion was more then just surgeries. His passion extended to the patients and their families. We knew he truly cared too. Another one of God's blessings.
When we looked at the scans, the tumor looked so large in her little body and her liver was even larger. An immediate sense of guilt rushed through me, how could we have missed this, or why didn't I demand more tests earlier on. Madelyn only weighed 13 lbs. She had a baseball size tumor in her tummy and her liver was enlarged three times the normal size it should be. How could they miss this?? But, I knew even if we had all of the tests done earlier, the result would have been the same, cancer. Her surgery was scheduled for next morning.
That evening, my Mom, Bob's Mom and my sister, Karla came down for another visit. They also brought Allie along with them. This was Allie's first visit. It was so painful to see Allie so filled with fear. And trying to comfort her was even harder. We, ourselves, were so scared. It was difficult for her to even look at Madelyn. She didn't want to spend much time in her room, because then she would have to see her little sister looking so ill. She only requested to go to the playroom. In there, it was filled with laughter and smiles and it could temporarily take away all of her worries and fears. After they left, the hospital Pastor came up and baptized Madelyn. We were going to have her baptized at our church in June. However, after talking to our pastor, Bob and I decided to baptize her before surgery. It was a very emotional event.
Bob and I were so tired. We both had only slept a few hours since this journey began. When we went to bed, we both knew neither of us were going to sleep. I wish someone could just pinch us and tell us this was all a bad dream, but that wish was impossible. Besides being tired, scared and overwhelmed, we missed the family life we had. We just wanted us all to be together, as the family we were prior to May 9th. Looking back, life seemed so simple then. I know God had other plans for us. And I also know God will see us through this, no matter what.
(To be continued.....)
Thank you for all your love, prayers and support. We are so blessed to have you sharing Madelyn's journey with us. Have a beautiful day! ((Sending y'all big hugs!))
With Love,
Connie, Bob, Allie and Madelyn
Saturday, September 14, 2002 at 07:09 AM (CDT)
Good Morning!
It has been a few weeks. Sorry! Things here are going great for us all. We have been busy. So, here's a quick update...
Allie is back in school and loves being a 2nd grader! One of her best friend's is in her class. They were together in Kindergarten and 1st grade too. She was very happy to be with Ann again! She also loves her teacher, who is SO nice! I am going to start volunteering at the school for a few hours a week, and Allie can't wait for this. I am excited too.
Madelyn moved into the "Big Kids Room" at daycare. She was very excited about this transition also. It is so funny to see "little" Madelyn with all the bigger kids.(Most are 3-5 yr olds.) She is the smallest and youngest one in there....but because she is so mature for her 2 yrs, she does wonderful.
Bob and I are doing great too. We are going to the Vikings football game tomorrow. My dad gave me four tickets to the game. We are taking my younger brother, Ben and one of his friends. We have 8th row seats!! We are all so anxious to go!!
My birthday was on the 3rd. Bob bought me a new computer! WOO HOO!! I had a "Flinestone" model but it worked fine for my online needs. (We had no hard drive space so we could not add any more programs or download anything.) All I can say, this new computer is the best! It is shocking how more I can do and how fast it is! What an awesome gift! And I have to tell you the other present I received. Tom, my older brother, usually forgets my birthday every year and has really never given me "jack." (giggle) Well, this year he and his wife gave me Jack! Jack Thomas was born on my birthday!! He is such a precious little baby! He weighed in at 6lbs 6oz and was 20 inches long. He also has a lot of dark hair! So, a big Congratulations to Tom and Donita!! And welcome to the family, Jack!! We love you!!
Thank you to everyone for visiting Madelyn's site and sharing her journey with us. And thanks again for everyone's love, support and prayers. We are SO blessed to have such loving family and friends in our lives. You have a very special place in our hearts. And thanks for signing the guestbook and leaving the sweetest messages! You really brighten the girls' day! Sending y'all big hugs!! Have a BEAUTIFUL weekend!
**Prayer Request** Please say a prayer for my Mother. She was "attacked" by a dog a couple weeks ago. (Actually, three of them, but only one did the major biting.) She has been on medication since then, however she aquired an infection from the bites. Please keep her in your thoughts and prayers for a speedy recovery. ((Thank you!))
With Love to All,
Connie, Bob, Allie and Madelyn
Monday, September 02, 2002 at 12:18 PM (CDT)
Hello!!
I hope everyone is having a safe and wonderful Labor Day weekend! We had a blast in Wisconsin Dells, but I will tell you more about it soon. Plus, I will update the pictures.
Gina Pullen is our special guest today!! First, let me tell you a little about her and how we met. In May of 99, a special group of ten ladies and myself formed an email loop, when we found out we were pregnant. All of us had due dates of Jan 2000. And it was through the loop that I "met" Gina. Although we have not met face to face, we have spent many hours on the phone talking, crying and laughing. She is such a phenomenal friend who has provided me and my family with tremendous amount of support and love. She is such a special lady who has many "Angel" like qualities. Without further ado........here is Gina's journal entry on how Madelyn's cancer touched her.
Gina's Journal Entry........
I remember being out of town for the weekend and coming back home and thinking I just need to jump online really quick and check email. Nothing major, just a real quick peek. My mailbox was just jammed with where is Gina emails, I think there were even a couple of messages on my answering machine, but I hadn't gotten that far just yet. I was SHOCKED to read the news that Maddie had been diagnosed with cancer. I was just 4 months cancer free myself. At first I had a million things go through my mind. Just 6 months earlier I had given birth to a 30 week preemie. I was scared and felt like I was all alone, just like the day I was told that I had cancer.
I took a few minutes to collect my thoughts, told my husband what was going on and then started on a phone call frenzy to find Connie. I can remember the sound in Connie's voice when I said hi, its me Gina. Connie had no clue where to even start, she flooded me with questions asking me my opinions on everything. At this point I asked Connie to slow down give me the story from beginning to now. Then I asked her how Maddie was, Allie was, Bob was, and then finally I got to the question I really wanted answered. How was Connie?? I so remembered my days and nights in the NICU with Jack, it was all about him and nothing about me. I couldn't care less how I was doing but finally realized I had to be at my very best for him. This is the same thing I began to convey to Connie.
I don't know how my campaign to help Connie began, I think I just went on intuition. I knew I had to be there for her even though I lived in far off Kentucky. Connie and I spent hours on the phone, I even talked with Bob and Allie.
My greatest idea just snuck up on me one night. I decided to make a book for Connie and her family and send it as soon as possible. I asked the ladies that we were both friends with online and even some who had no clue who Connie was to just e mail me a few special encouraging words for Connie and her family to read. They were all told the story. Man oh man when the responses started coming in, I was flabbergasted. I didn't know who most of these people were, they had just heard through a friend and wanted to be included in this book. I had a few special poems that helped me through my cancer battle so I included those also. I went to the youth group at church and told them what was going on and asked for their prayers and for them to all make a card for Maddie for me to enclose in my box to the family.
I used to have pictures of the book on my website, but somewhere in the shuffle of the big wide Internet they have gotten lost. I remember working on this book, I had a 6 month old preemie needing special care in my house, but between feedings and nap times I was diligently cutting and pasting and working on that book. I didn't want Connie, Bob or Allie to think for one single moment that they were all alone. I wanted them to know they had bunches of people praying for them.
I remembered thinking that Allie was feeling all left out, and actually I had a great time shopping for that special little 5 year old. I was always sending Allie packages to let her know she was special and just to make her smile.
A couple of years have now passed since that one weekend I was absent from my computer. I can tell you, I now check my email every single day without fail, just in case.......just in case. My heart still sinks when I think of the moment I found out that precious little baby had cancer and my heart just jumps for joy every time Connie and Maddie get back from a check up cancer free.
Connie and I have connected more and more through the years. I know she feels like I was there all the time and I knew just the right thing to say. But to tell you the truth I didn't have a clue. I just didn't feed her a lot of BS and made her believe that anything was possible as long as you wanted it enough. I knew from going through cancer myself and from having an extremely premature baby that a positive attitude was almost all of the battle. I tried my hardest to keep Connie positive........I remember telling her I dint have time for her negativity, not at all meant to be mean, but to force her to be positive at least 20 minutes a day when she was on the phone with me :o)
Maddie will always have cancer in her life........I will always have cancer in my life......But we are both living through it and that is all that truly matters.
Gina Pullen
Gina, thank you so much for your entry! It was very beautiful. And the book she made for us, it is unbelievable! I remember the day I received the book. I was in my kitchen when I started to read it. I literally fell to the ground and cried. I sat there for almost an hour reading through all the letters of love, poems, prayers, pictures and well wishes. It was AMAZING and it will be cherished forever. And when she mentioned the phone calls to us in the hospital, she described it so well. She was so encouraging to us with her positive attitude. And after all she went through in her own life, to hear how upbeat and positive she was, I knew we could get through this too. She gave each member of our family so much individual attention and love. And I can't forget all the other special ladies on the loop who also were there for us! They formed a team and took turns calling us, emailing us, and sending us cards and gifts. It was SO incredible! So, a very, very special thanks to Gina, Arlette, Debbie, Sam, Sarah, Joy, Emily, Melody and D'Ann. Thanks again for EVERYTHING!! You will always have a very special place in our hearts, for you have touched our lives so deeply. We love you all!! We are truly blessed to have you in our lives!!!
PS~ Gina, Wishing you a very special Happy Birthday, tomorrow! As you already know, your birthday falls on the best day of the year! (giggle!)
With Love,
Connie, Bob, Allie and Madelyn
Sunday, September 01, 2002 at 02:48 PM (CDT)
Today is Madelyn's 2nd Cancer Free Anniversary! Sending everyone special cyber hugs for all their love, prayers and support! May God bless you all!
With Love,
Connie, Bob, Allie and Madelyn
Monday, August 26, 2002 at 06:47 AM (CDT)
Hello Everyone!
I hope everyone had a beautiful weekend! The weather was so nice. I had to work all weekend but I was able to enjoy the weather. I still can't believe this is the last week of August. This summer flew by! Next week, Allie starts 2nd grade. (BTW~she just found out who her teacher is and she is SO happy! Her friend, Ann, who was in her Kindergarten and 1st grade class is in her class again!) I guess with summer coming to an end means I will have to drain the pool too. :o( Yes, that is a sad face. We have had such a blast swimming in it, even though it is small! I guess it will us all something to look forward to next summer though.
Last night, we went to my Dad's house. (We also took Allie's friend, Leah, with us.) They had a little horse riding party. It was so much fun! My Dad and Step-Mom invited a couple of my cousins and their families to join us. What a special treat, since we don't see them much. It was nice visiting with them. My sister, Karla, and her family, my brother, Tom, and his wife and another family, who are like family, were there too. And of course, my younger brother, Ben was there....he lives there. (He just turned 12 last month! And let me say, he is the most special little brother in the world!) Right when we got there, we ate a wonderful meal! (Thanks Diane....it was VERY delicious!) Then, we went to the corral to ride. There were 12 kids there to ride....plus some of us adults. The girls LOVED it. I thought for sure they would enjoy riding the little pony more than riding the big horse. I was wrong! It was tough getting them off the horses. After all the kids rode, I got on and started running it. (The big horse and not the pony. lol) When Madelyn saw this, she started screaming that she wanted to run. So, I got her up on the horse with me and away we went. When we started to trot, she said, "Oh, Mom, this is too bumpy." It was pretty cute. But, little Madelyn kept laughing the entire ride. After Madelyn's turn, I took Allie out for a little "run." She thought it was great also! However, I ran it a little faster and longer than I did with Madelyn. It was fun watching all the kids having a blast!! Diane also gave all the kids a "horse souvenir" at the end of the party. How sweet! We took a lot of pictures so I will post a few soon. What a wonderful way to end a beautiful weekend! Thanks Dad, Diane and Ben for making it such a special day!! It will be a memory to be cherished forever!
When we got home, Madelyn told me she needed to call Grandpa. I dialed the number and handed her the phone. I heard her scream, "Hi Grandpa! I had FUN!" She then asked him if she could come over in the morning to ride the big horse. LOL!! I guess she wanted to make this a daily event!
Well, we are going away to Wisconsin Dells this week. I pray the weather stays nice at least for a couple of the days. We are all excited to hit the waterpark! I know we will have a great time even if it rains!
I hope everyone has a wonderful week also. Thank you for visiting Madelyn's site. And thanks again for everyone's love, support and prayers. ((We Love You All!)) We are SO incredibly blessed to have such phenomenal family and friends in our lives. You will always have a very special place in our hearts. And thanks for signing the guestbook. You really brighten the girls' day! You know how to make them feel so special and loved. Sending y'all big hugs!! Have a BEAUTIFUL day!
With Love,
Connie, Bob, Allie and Madelyn
Monday, August 19, 2002 at 10:30 AM (CDT)
First Breath
When Allie was born, we were living in Guam. We didn't have any family there to share the experience with. So, when I found out I was pregnant with Madelyn, it was very important to me to share the experience with my family. Madelyn was going to be the eighth grandchild born to my parents and neither of them had been present for a grandchild's birth. So, I asked my Mom to be there, to share the experience with us. My Mom lives four hours away, so we were nervous she may not make it in time. Well, it all worked out perfect since they scheduled me to be induced. (I also asked my sister to be there but we had a bad snowstorm the day before and unfortunately she was not able to make it.) The memory of having my Mom there to witness the birth of Madelyn will always be cherished deep in my heart. Watching the tears of joy, love and happiness flow from her eyes, through the entire birth, was very amazing and touching. To know the experience of Madelyn's birth touched another so deeply, was emotional in itself.
I wanted to give my Mom a special gift to thank her for being there and sharing the special day with us. I bought her a very nice photo album. It had a picture frame cover........and I had the words, "First Breath" engraved on the cover. The front picture was of her and Madelyn, taken shortly after her birth. It is a very precious picture! I also included pictures of Madelyn's birth, and other assorted family pictures taken the first couple of weeks after her birth. I also enclosed a letter, written by Madelyn. (Well, I wrote it, but I wanted it to be as if Madelyn did.) Here is the letter........
Grandma,
January 13, 2000! The day of my birth and YOU were there! I am so happy you were able to see me being born. I know my parents are extremely delighted they were able to share the experience with you. It is an event that can be cherished in all of our hearts forever. It is so hard to express how meaningful it was......except to say....Thank you.
I may not remember the actual events of my birth, but I will
always know this. You were able to share my birth with me. Your first sight of me was my head and hair. Then, you watched the rest of me, slowly enter the world. My first breath of air was the same air you were breathing. We shared that breath and that moment; on the most special day of my life.
Grandma, you were there when my Mom was born. And you were
there when I was born. I hope you can be there when I give birth to my child. I will need you there to hold our hands, like you held my moms the day I arrived. Your presence gave her so much love and strength. I will need that too.
You will always hold a special place in my heart. Thank you for being part of my first breath!
I Love You,
Madelyn
Waiting Room Experience
I remember sitting in the waiting room the day of Madelyn's first surgery. They were removing her tumor. Bob, my Mom, Bekki, (my sister), Connie,(Bob's Mom), and Pastor Brad were there to pray with us and give us the support we needed. I looked at my Mom and could see the fear in her eyes. It hurt so bad to see her (and everyone else, me included) so scared. My mind started thinking back to the special day of Madelyn's birth and to the letter. My Mom doesn't even know this, but I started crying with the thought of losing Madelyn. I remember the joy and happiness on my Mother's face the day Madelyn was born. And I thought, if God takes Madelyn home, I could not let my Mom be there for Madelyn's last breath. I did not want that memory to be replaced with sadness and pain. I started shaking and crying with the thought, and I remember, I asked Pastor Brad to say another prayer with all of us. Wow, that was very painful to write. I am going to stop here for now.
Thank you, God, for blessing us with Madelyn and Allie. Both of them are such beautiful girls! Thank you, Mom, for sharing her birth with us and for everything else. And to everyone else, thank you for your continues love, support and prayers! Please take a second to sign the guestbook. The girls get very excited when I read them their new messages. Have a beautiful day! Sending you all hugs!
Oh, before I end this, Allie wanted to type a little message. (She actually typed the following message!)
Thank you for your messages. I like them. Love allie
With Love to All,
Connie, Bob, Allie and Madelyn
Wednesday, August 14, 2002 at 06:00 PM (CDT)
Hello Everyone!!
My last few messages were quite lengthy and deep, so I decided to make this one short and cute.
"I'm Up!"
Yesterday morning, Allie was getting ready for her Vacation Bible School class, when Madelyn started whining that she wanted to go to Bible class. (I was listening to their conversation while I was doing Allie's hair.) Madelyn looked at Allie and said, "I am going to Bible class with you." Allie said, "No, Madelyn, you can't. You have to be four or up." Madelyn paused for a minute and said, " Allie, I'm UP!" Allie and I just started laughing!
"One Girl's Trash is Another Girl's Treasure"
We have these three delightful teenagers who visit us very often and use our trampoline. They are Kevin, Luke and Chad. Tonight, Kevin and Luke came by and brought me a rose. Isn't that sweet?? Well, Kevin told me the story behind the rose. Today, he bought his girlfriend a dozen roses. His girlfriend discovered one of the roses had broken so she threw it in the trash. Luke and Kevin decided to give me the rose and dug it out of the trash. They also didn't want me to have a broken rose. They "duct taped" it so it would be straight. Now, the "duct taped" peach colored rose sits in a vase in my house!! Thanks Guys!! As the title reads.......it's my treasure now!
I hope everyone is having a beautiful week!! Enjoy the day! Thanks again for your love and support!!
With Love,
Connie, Bob, Allie and Madelyn
Tuesday, August 13, 2002 at 11:38 AM (CDT)
Hello Family and Friends!!
I hope you all are enjoying this summer. I can't believe it is almost over with. Where did the time go? We have one last vacation planned for the summer. It is our annual trip to Wisconsin Dells. This will be our third year going. We found out the results of Madelyn being cancer free on our first trip. So, it's a vacation and a celebration, all in one. It is not for a couple of weeks, but we are all SO excited about going.
This journal entry is about our oldest daughter, Allie and her experience with Madelyn's cancer. (Yes, it's another long entry. Sorry!)
First, let me introduce you to her. Seven years ago, Allie was born on the island of Guam. Her real name is Alexandra and we call her Allie for short. Allie loves swimming, jumping on her trampoline, playing with her sister, friends and cousins, biking, reading, playing soccer and spending time with her family. This fall she will be a second grader! As you can see by the pictures, she is a very beautiful girl. She is as beautiful outside as she is in the inside. Allie is such a loving and gentle child. We are so blessed to have two beautiful girls!
When Madelyn was born, she had a very tough time dealing with the transition from being the only child to suddenly being forced to share her parents with baby. Allie has always been the model child. She is such a loving, respectful, super mannered, dream child. (Of course, she did do the normal naughty kid stuff......but that's to be expected...right? lol!) She is also a very sensitive little girl. We knew it was going to be difficult for her when Madelyn was born, so we tried everything we could think of trying to prepare her for it. However, I personally don't think anything can really prepare a child for it, except for the actual experience. Allie never acted out towards Madelyn or us, she just closed up and kept her feelings inside. The stress of it all caused her to lose a lot of hair in the beginning. It took a little while, but soon Allie was back to her normal self........and actually loved having a baby sister. She would hold Madelyn and try to make her smile. And of course, Madelyn loved watching her big sister act all silly.
Allie had just turned five years old when Madelyn was diagnosed with cancer. Allie didn't understand the word "cancer," however she did realize Madelyn was very sick. She had watched her cry in pain and throw up daily since she was a week old. We knew this was going to be very difficult on Allie also. So, we tried our hardest to keep her involved with everything and still have a normal routine. For a five year old, she understood a lot more than we thought she would. She could tell people what was wrong with her sister and pronounce the word "Neuroblastoma" like it was as easy as saying the word "playground." When Madelyn would be admitted for her treatments, we would take Allie along with us for a day or two. During the day, I would take her to visit different places around Minneapolis, like the Science Museum, Mall of America or ValleyFair. At night, she would stay with Bob in the Waise Center, which is a like a hotel room at the hospital for families.
I remember the day Madelyn was discharged from the hospital after her surgery. I was so excited to finally get home after spending almost two weeks away from Allie . I just wanted to be with her to laugh and have fun. Right after we got home, Allie and I went for a nice long walk. Of course, the walk led us around a couple parks, so we could swing and laugh together. Right before we left the last park, she picked up a rock and told me she was going to keep it. Not thinking anything about it, I told her it was fine. About a block before we got home, Allie asked me one of the hardest questions I had ever been asked. She asked, "Mom, is Madelyn going to die?" I stopped the stroller, shocked to hear what I just heard. (Never once did we ever mention that word.) I bent down, held her in my arms and told her......"No, Allie, Madelyn is not going to die. She has a tough road ahead of her and is going to be sick for a few more months. And after that, she is going to be happy and healthy.......something she has never experienced.........." She hugged me back and I started pushing her again. Allie, knowing my heart was hurting, did the sweetest thing. She said, "Mom, you know this rock I have? I am keeping it forever to remember our special day together."
Although, she appeared to be the same "happy" child, she was filled with stress and fear. She didn't have to tell us anything.......we knew. And it was very evident when her hair started falling out again. We sat down and had a "grown up" talk with her. We told her that although unpleasant thoughts and feelings can be hard to face, a good way to lessen the stress is by talking about them. She did open up to us and told us how scared she was and how she missed us all being a family. From that day on, she came to us when she was feeling lonely or down.......and she seemed to "grow" from the entire experience. She still asks a lot of questions about Madelyn's cancer. She also gets "scared" each time we take Madelyn in for her scans and check ups. And each time we return from the scans, it's like a big weight is lifted off of her shoulders, when we say Madelyn is still cancer free! She always runs and kisses Madelyn and tells her "Congratulations!" (It's very cute!) Madelyn is so lucky to have such a loving older sister to look up to. She may not realize know, but when she gets older, she will.
A couple weeks ago, I asked Allie a few questions about Madelyn's cancer and here's a few things she said:
She said she liked her two Grandma's taking care of her. They were fun. And she was very sad when they left.
When she was at the hospital, the only thing she liked to do is go into the playroom. She said she didn't like to spend much time in Madelyn's room because it was sad to see Madelyn not happy.
I asked Allie what the worst part for her about Madelyn having cancer, she looked at me like I just asked the silliest question. She said, "That's easy. Madelyn having cancer."
As for that special rock, she still has it. It is kept in her special "Angel Box." We take it down periodically and talk about that special day. It warms both of our hearts.
Bob and I are very blessed to have two beautiful and loving little girls. And we are blessed to have y'all in our lives too! We could have never made it this far without you! Thank you for your love, support and prayers!! Whether you are family, friends or just surfing in, we thank you for visiting Madelyn's website. Please let us know you visited the by signing Madelyn's guest book. Both of the girls love it when I read them their new messages!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:47 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed with the entire party...the food, the decorations, the volunteer's, the other party attendees and all the activities they had planned for the kids. WOW!! They put a lot of hard work into it, and it was amazing!! For the kids, they had a tattoo booth, a face painting area, a fishing pond, an arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! Madelyn's minnow beat Allie's minnow by a long shot! We don't think Allie's minnow had much energy because it didn't even leave the start area. lol!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs! Very creative! They also had a Police K-9 demonstration....which is always a big hit! Oh, how could I forget the dunk tank? It was very cold and rainy outside so I really felt sorry for the ones who got into the tank! ((Brrr)) One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in the dunk tank. However, he did not even have a chance to warm the seat up, he was dunked with the first throw! lol!! Poor guy! The dunk tank was a great source of entertainment both both the kids and adults! And I think the dunkee's had a blast too! :) I almost forgot to mention the food at the party! They had all types of fruit, hamburgers, chicken breasts, chicken nuggets, salads, bars, and root beer floats! It was DELICIOUS!! The table was the cutest! It was a beach party theme and the decorations were awesome! They had the silverware and plates in sand buckets....a life jacket on the table and beach shoes...it was just too cute! Very, very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! Allie and Madelyn came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so many people! Thank you for your love, support and prayers!! Whether you are family, friends or just surfing in, we thank you for visiting Madelyn's website. Please let us know you were here by signing Madelyn's guestbook. Both of the girls love it when I read them their new messages!
Have a beautiful day!
With Love,
Connie, Bob, Allie and Madelyn
PS~Please disregard all the identical copies of this entry in the history folder. I didn't think the update button was working....obviously it was! (giggle)
Saturday, August 03, 2002 at 02:47 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! Allie and Madelyn came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:47 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! Allie and Madelyn came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:47 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! Allie and Madelyn came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:49 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! The girls came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:49 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! The girls came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:49 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! The girls came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:48 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! The girls came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, August 03, 2002 at 02:48 PM (CDT)
Hello Everyone!
We just got home from the 1st annual Pediatric Cancer Beach Party Picnic here in St. Cloud! We were so impressed at all the activities they had planned for the children, the food and decorations! WOW!! It really was amazing!! They had a tattoo booth, face painting, a fishing pond, arts and crafts area, a duck pond, an octopus ring toss and a real minnow race. (Yes, they had live minnows racing in a long tube! We all loved watching that!) And a real cute game was the bean bag toss. Instead of using bean bags, they used ice packs. Cute idea! They also had a Police K-9 demonstration and a dunk tank! It was very cold and rainy outside so I really felt sorry for all the people who got into the tank! One of the oncologists from the Mpls Children's Hospital was there......and he was the first brave one to get in. However, he went down with the first throw! lol!! Poor guy! And finally......the food! It was a beach party theme and everything on the food table looked so adorable! Very creative! They really spent a lot of time decorating and planning this party!! Thanks for making our day so special! The girls came home with so many prizes and neat stuff! And the best was watching the smiles on their faces!! We all had so much fun! Thanks again!!
We are very blessed to have our lives touched by so people! Thank you for your love, support and prayers!!
With Love,
Connie, Bob, Allie and Madelyn
Saturday, July 27, 2002 at 05:08 AM (CDT)
It only took three or four words….
It’s the three or the four word phrases that come to mind when I reflect back to the beginning of our cancer journey. It is very painful to go back and talk about the day when Madelyn was diagnosed. However, these memories are so “alive” in my mind and I think it will be helpful to share these memories with you.
“She Has Cancer”
The three most painful words I have ever heard. As I cradled Madelyn in my arms, I thought maybe I didn’t hear him correctly, but the look in her Doctor’s eyes, reassured me, he said what I heard. He did not have to repeat those awful words again. I know I’ll never be able to accurately describe the feeling I felt when I heard those words, but I will try. Before I heard it, I felt like I was sitting very securely in the chair. After hearing those words, it was like someone pulled the chair and the carpet out beneath me, causing me to fall so hard to the ground that it knocked the wind out of me. And while I was down, it felt like someone else came up from behind me and clobbered me on the head, because everything became one big blur. I remember watching her Doctor’s mouth move, but I did not comprehend a word he spoke. I was an uncontrollable mess. So many thoughts consumed my mind....cancer? How? Why? How can a baby so little have cancer? How much pain is going to endure to get rid of the cancer? and on and on...Why they allowed me to walk out of that clinic alone, is beyond me. When I walked through the lobby of the clinic, I literally felt like I was going to lose my balance and collapse to the ground. Thank goodness I didn't fall since Madelyn was securely wrapped in my arms.
As soon as I got in the car, my only focus was to get a hold of Bob. I knew I was supposed to get to CDI right away, but I had to run home to get my cell phone. I tried Bob’s work cell number a dozen times, no answer. I tried his work number, no luck there either. As I said in my last entry, her Doctor beat me to the punch. He called Bob on his cell phone and told him to respond to the clinic immediately. (He probably got a hold of him before I even left the clinic.) So, that explains why I could not reach him.
"No NO! NOOO!", "No, not Madelyn!" & "I’ll be right there!"
Trying to drive to CDI was a challenge in itself. I could barely see the road, due to the non-stop flow of tears and the fogginess in my head. I also knew I could not face this alone, I needed someone there with me to hold me up. I called my Dad, who was at work at the time. The three-word phrase I remember him saying was, "No! NO! NOOO!” With the last NOOO, filled with so much pain. He told me he would meet me at CDI. The next call was to my Mom. How can one gently say, “Your Granddaughter has cancer.” You can’t. I remember hearing my mom’s voice crackle and could tell she was trying to gasp for air when she painfully pleaded, ”No, not Madelyn!” Since she lives 4 hours away, her four-word response was, “I’ll be right there!”
Once at CDI, they put me in a private waiting room. Madelyn was peacefully sleeping in her carrier. While non-stop praying, I held her precious little hands, asking God to heal her, help her and protect her. Every second felt like an hour when finally, Bob walked through the door. By this time, I had Madelyn securely in my arms. Bob and I did not say a word; we simply held each other and cried and cried and cried. We were scared to death!
“I love you”
After her CT scan, we walked out into the lobby to find my Dad waiting for us. From the look on his face, I knew he was feeling the same way for me, as I felt for Madelyn. As a parent, you will do anything you can to protect your children. There was nothing either of us could do to take the pain away from our children. (He to me and I to Madelyn) It was out of our control; it was all in God’s hands. Right before we got in the car to leave, his eyes were filled with tears, when he bent down and kissed Madelyn on the head. He softly whispered, “I love you”, which was another very emotional three-word phrase. I could feel his fear and sadness as he turned away, unable to speak another word.
“We will pray” and More
We drove home to pack our bags, not knowing what we would need or how long we would be gone. My Mom had volunteered to come down and watch Allie and take care of the household for us. Bob’s Mom caught the first available plane to MN so she could help out too. My sister’s also put their lives on hold to assist us. Everyone we called said the most comforting words we could hear, “We will pray!” Also other comments we heard included, God Bless Madelyn, God Bless all of you, What can I do to help? What do you need? We are here for you...and on and on.
“I love you, Madelyn” “I love you, Mom” “I love you, Dad”
Before we left for the hospital, we drove to Allie’s daycare. Knowing her life was going drastically change; we felt it was important we told her what was going on. We brought her into the car; all of us squished in the backseat and held her so tight. She had just turned five, so she had no concept of cancer. We told her that we needed to take Madelyn, who was very sick, to a hospital in Minneapolis, so the doctors can make her feel better. She could sense our fear and sadness. She leaned over; told Madelyn she loved her and then kissed on her lips. Then, she looked at me and said the three words I needed to hear the most, “I love you, Mom.” And finally she looked at Bob and said, “I love you, Dad.” She proceeded to hug us both so tight, and then asked to go back to daycare. After Bob returned to the car from taking her back inside, we both broke down in tears. Our precious Allie was so sweet and innocent, yet she knew this was serious and that we were very scared. (Allie, we love you so much. It breaks our heart to know how stressful Madelyn's cancer was on you!! We made it through it together! WE LOVE YOU!!)
Thinking back to that day, and to the first three words I heard, those words changed my life forever. But, it was everyone else’s three or four word phrases, that we heard in the first couple of hours, that helped us through it and turned it into a positive experience. Cancer has taught me so much. It made me stop and realize what is really important. It doesn’t matter how much money you have, how big your house is, what kind of car you drive, and so on. Each of us is put here on earth to learn, share, love, appreciate and give of ourselves. And none of us know when this experience will end...when God calls us “home.” Everyday is a gift and we need to treasure it! I realized I can't take anything for granted...for at anytime....it can be taken away. As long as you have Family, Faith, Hope and Love, then you are living a rich life!
The prayers, the love, the support, the calls, the emails, the cards and gifts, the visits, and your dedication and commitment to us………we could not have done this without you!! We will thank you all for life! ((Sending you all big hugs!!)) We thank God everyday for blessing us!
It only took three or four words to know our prayers were answered and to totally warm our heart!
On Sept 1, 00, Madelyn's Oncologist told us the four special words we had been praying to hear, “Madelyn is cancer free!” Those four words were music to our ears and a huge weight lifted from our shoulders. I know our entire family celebrated when we heard the news!!
But by far, I think the three most special words came from Madelyn's mouth many months after her journey began. When she looked us in the eyes, with a big heartwarming smile.......and told each of us, "I Love You!!" (Madelyn, we love you too!)
Thanks again for your Love and Support!!We Love you!
Connie
(And Bob, Allie and Madelyn)
Tuesday, July 23, 2002 at 01:35 PM (CDT)
As I said in the past entry, I have now included Madelyn's journey into the Neuroblastoma world. It's a very long story......just to warn you.
Madelyn was born Jan 13, 00. About a week after she was born, she started throwing up. We switched her formula.....and it didn't help. And did that a few more times. At one month old, her Pediatrician diagnosed her with a mild digestion problem and colic....and switched her formula again. At her two month appt, I explained to him that she throws up all the time, so he prescribed her some zantac along with the tummy relaxant meds. (She would throw up like an adult would......repetitively......sometimes five+ times a day.) Well, she continued to throw up even more.....so we took her back in at 3 months......and then they said she had an ear infection. I thought it kinda made sense but could tell there was something else wrong. So, after the 10 days of meds, I took her back in, and her ear infection was still there. So, they put her on another medication.
At that point, I knew something else was wrong with her......never in a million years did I suspect cancer though! The following morning, I came home from work (I worked a night shift) and asked Bob how she did through the night. He said she threw up a couple times. I took one look at her and I thought she was going to die. She looked so ill. Bob had the day off and had plans for the day, so of course he didn't want to take her in. He thought I was over reacting because she just was at the doctor the day before, and she still had an ear infection. I think he realized how serious I was and agreed to it. I told him not to bring her home without doing a blood test. He told her Dr. what I said about the blood test. Bless his heart, because we totally love the girls' doctor, but he didn't feel it necessary but agreed to do it. And thankfully he did! It showed her liver enzymes were elevated. Then, they did an x-ray and saw her liver was enlarged. The tumor was hidden behind the liver.....so at that time they did not know she had cancer. They set us up to see a liver specialist for the following week.
It was May 9,00, the day prior to the appointment with the liver specialist, I had to take her in for an ultrasound. I was supposed to take the scans along with us to the appointment. However, we never made it to it because that's when they found the tumor. I did not find out during the ultrasound.......they just told me to go upstairs for my appointment with her Dr.(Madelyn was having these bug like spots on her skin that would swell and then disappear all over her neck, face and tummy. We later found out it was break through cancer.) So, when he walked in the office, I started telling him about the spots......and I could tell he was not listening to a word I was saying. I stopped in mid sentence and said, "There is something very wrong with her, right." Tears filled his eyes......and that's when he told me she had cancer. (I am sure from a doctors standpoint, it is one of the hardest things to tell a parent, that their child has cancer. Or any life threatening illnesses, for that matter.) He told me I had to get over to CDI, (Center for Diagnostic Imaging) so they could do a CT scan. And said as soon as we were done at CDI to get down to the Children's ASAP.
Bob was not there with me at the doctors....and I could not get a hold of him on the phone. I gave the Dr. Bob's cell phone number......and unknown to me.....he called Bob and told him he needed to talk to him immediately at the clinic. That's why I could not get a hold of him, because he was with Madelyn's Dr. I never felt so alone in my life. I just received the most heartbreaking news of my life, and there was no one there with me. Not knowing what the future had in store for Madelyn, I could not hold her close enough to my heart. About 45 minutes later, Bob walked into the waiting room where we were. Neither of us spoke....we just held each other, with Madelyn between us, and cried.
We arrived at Childrens Hospital.... and immediately her Oncologist suspected neuroblastoma. Neuroblastoma arises from the neural crest cells which may be in the adrenal gland..(just above the kidney) or sympathetic nervous tissue. Her diagnosis was Stage IV. Her primary tumor was located on top of her kidney, which the tumor was the size of a baseball. The cancer had metastasized to her liver, bone marrow, the soft tissues in her head and her skin. Her liver alone was enlarged three times the normal size......so where ever you touched on her tummy, you were touching liver. And it was 99% cancer. Madelyn went through surgery to remove the tumor. She also had a port inserted during that surgery as well. A week after her surgery, she started her chemo treatments. (She was placed on and followed the CCG-A3961/Intermediate Risk Research Study protocol.) She had a total of four rounds......or 10 treatments. The chemo drugs she received included Carboplatin, Etoposide (VP-16), Cytoxin, and Doxorubicin.
On Sept 1, 00, just nine days shy of four months from the date of her diagnosis, Madelyn was declared cancer free. Right now, she is being followed with urine tests to check her Catecholamine levels every three months. And every six months, we take her down to Childrens where she gets a bone scan, CT scan, blood work and a physical.
Today......almost two years out, she is a very happy and healthy little girl. Looking at her, you would never know she was sick a day in her life.
We want to say a very special thank you to everyone who reached out to us and supported us along the way. That includes all of our family, friends, our Pastor, people we never met....and the support group we still have today!! Thank you from the bottom of our hearts. Your kindness will never be forgotten! Also, thank you to her Pediatrician and his nurse, her Oncologist and his nurse, and all the nurses at Children's on the 8th floor. We could not have did this without you!! And Thank You, God, for seeing us through this journey. You have blessed us with two beautiful children! Thank you!!
Okay........I knew this would be long. I am stopping for now! If you have any questions, feel free to email me!
**One last note** Please say a special prayer for my friend, Debbie and her family. Her Mom passed away last night. May God comfort her and her family during this very difficult time.
Much Love,
Connie, Bob, Allie and Madelyn
Tuesday, July 23, 2002
Hello Everyone!
I am just starting this journal. I will be adding Madelyn's cancer story soon. Madelyn is doing great. She is enjoying her summer with her big sister, Allie. We bought a pool this summer, so the girls are having a blast swimming in it. I am going to try adding pictures to this site soon!
I will update this site soon! Have a great day!
Connie, Bob, Allie and Madelyn
Click here to go back to the main page.
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