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Saturday, January 13, 2018 3:54 PM CST This coming Tuesday, January 16, 2018, marks what would be Maddie’s 28th birthday. This year Maddie’s birthday offers an interesting milestone. Maddie was 14 years old at the time of her death in 2004, and it has now been that same number of years that she has resided in heaven. This realization came to me as I was driving alone in my car, Bruno Mars’, “Just the Way you Are,” playing on the radio, and an image of a smiling Maddie shining brightly in my mind (these lyrics ALWAYS make me think of Maddie):
When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for a while
'Cause girl, you're amazing
Just the way you are
I often belt out tunes while driving, and today was no different. However, I noticed tears welling up as I was simultaneously smiling at the image of Maddie dancing in my mind’s eye, and I realized, yet again, how I have made room for emotions that many see as incompatible to coexist inside of me.
I contemplated the perspective I had of what 14 years meant to me as Maddie’s earthly life was nearing its end back in 2004. While she had indeed packed a ton in to her very rich life, 14 years was clearly not enough for me, her mom. She was so young and we both had so many hopes and dreams for what we had previously imagined would be a long, full life. 14 short years…
Fast forward to 2018. It has now been almost 14 years since I held my sweet girl, hugged her warm body, kissed her, heard her wonderfully mischievous giggle, smelled her hair… 14 long years.
Perspective is an amazing thing.
Friends and family who have known us for many years know that I continue to celebrate Maddie on her birthday, just as I do her siblings, Ashley, ChaChi, and Keegan, and now Ahmed and Cedric, and my grandbabies, Sami and Maddie, on theirs. Some years I have celebrated more publically with bigger parties, other years our celebrations have been quieter- it just depends on where my head is at a given moment.
As I drove around today I sat quietly “in conversation” with Maddie, looking for direction on how to best honor her on her birthday. Maddie is one of the kindest human beings I have ever known. I am sure she is pulling the levers from where she is in an effort to shift our current climate to a place where compassion and decency outweighs mean-spirited treatment of others.
So- that’s it! I am asking any one reading this who is so inclined to help me celebrate my Marvelous Maddie this coming Tuesday, January 16, by consciously looking for a way to spread kindness. Bonus points given if your act of kindness is directed at someone who you may not typically acknowledge, is a stranger, or better yet, is someone you don’t like a whole lot☺! Maybe you’ll buy the stranger in line behind you a cup of coffee. Perhaps you’ll offer to run an errand for someone, or cover a work shift. Maybe you’ll shovel a neighbor’s sidewalk. Perhaps you’ll greet someone you usually walk past, ask them how they are doing, and REALLY LISTEN to their answer. Who knows? The possibilities are endless, but I can absolutely guarantee that whatever conscious act you choose to do in Maddie’s honor will do just that! She would be thrilled by this Kindness Campaign, and she’d eagerly be cheering everyone on!!
I’d love to hear about where this goes, so if you are willing to share, you can either post here or email me (juliedornisch@yahoo.com). If you want your “gift” to remain anonymous, no need to share it with me, I get that, too.
To all who choose to participate, consider yourself an honored guest at Maddie’s 28th Birthday Party! I know she’s thrilled to have you help celebrate her special day!
Happy Birthday Maddie! I love you to the moon and back a million, zillion times!
XOXOXOXOXOXO…
Mom
Wednesday, May 6, 2015 1:09 PM CDT Missing you every second of the past 11 years, and loving you more every single day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hugs, kisses, and butterflysXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Mom
Tuesday, April 28, 2015 6:23 AM CDT Diagnosis Day, April 28, 2003
As told by Maddie Paguyo
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. "Come on," I thought. "I want to go home."
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
"We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass."
The words all ran together from there. A brain tumor? Me? Why? I can't say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream;
survival rates, treatment plans, neurological tests, tears.
The shock was so great and yet the feeling was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July.
My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew. My legs shook like a toddler taking their first steps. My mother's arm turned purple as I grasped it in my sweating hands for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try; for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I'd forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
"Mom!" I tried yelling. Nothing came out. "Mom!" I fought through my coughing.
I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
"Maddie, are you okay?" my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I'd exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. "Pontine glioma," everyone around me was whispering. The same pain was still present. "Oww, make it stop," I remember saying, or maybe it was just a thought.
My mind was rolling with "what ifs" and "how abouts". On the outside I remained calm and unbelievably tolerant. I knew in order to get better, I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me.
With a smile on my face and all that pain inside me, I felt a warmness.I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on, whatever happens, happens. We can only fight for what is ours. We can't rewind time, we can't erase chapters in our lives, we just have to live them.
12 years ago our lives were turned upside- Diagnosis Day changed things forever.
Obviously, some things were very bad; most- all- were very difficult;
but as I reflect back to the year that passed between diagnosis and Maddie's death, I smile at the memories of some very amazing transformations we went through individually, and as a family.
We miss Maddie more than any words could convey- there are still times when the physical void and pain we feel literally leaves each of us feeling utterly helpless (I have accepted there always will be). When I find myself in the depths of grief and sadness, Maddie wraps her long, slender, loving arms around me and reminds me to look around at all the love and support that she so artfully and thoughtfully helped to build- my Maddie Mo certainly had a grand plan to buttress us with all that we would need to live our remaining earthly years well-cared for. Today the many bricks that came together to build a wall of support for a young 13 year old girl diagnosed with a horrific brain tumor still stand tall and strong- a wonderful reminder of Maddie's ability not only to unify, but to LIVE, encouraging us to pass our love and support along to all those who need it. In doing so, Maddie is very much alive in all of us.
Pass it on.
With love,
Julie, Ashley, Maddie, ChaChi and Keegan
Tuesday, May 6, 2014 5:21 AM CDT !0 years ago today, Maddie took leave of her earthly body and went on to heaven. 10 years. I have missed having her physically here with us every single second of those 10 years, and I know that Ashley, ChaChi, Keegan--and scores of other family and friends, have, too.
I also know, that in true Maddie fashion, she HAS been here with us in both tangible, and intangible ways. I see her in Keegan, ChaChi, and Ashley, who have kept their sister Maddie's loving, generous, hard-working, silly spirit vibrantly alive.
I see her in her many friends: Liz, Dannie, John, Brittany, Mayumi, Cree, Amanda… who continue to draw strength and love from their own special relationships with Maddie.
I see her in our extended family and friends- many of whom didn't know Maddie directly, but have come to know her through us.
We all have pieces of Maddie- some of us carry little treasured gold nuggets, from a single encounter, or a particularly touching story-- and others carry pieces inside of us that, if we piled them up one by one, would grow the size of a magnificent mountain, stretching from this world to the next.
The week between Maddie's diagnosis (April 28, 2003) and her physical death (May 6, 2004), has been a difficult week, at best, over these many years. This year, we started a kindness campaign in Maddie's honor that has span these eight days. We have encouraged our friends and family to do intentional Acts Of Kindness, using Maddie as their guiding spirit. We call them #MaddiesAOK. This idea is pure Maddie, and it has shifted the week for us from one of complete sadness, to one of joy. We have exceeded our goal of 100 acts in eight days, but I hope that the idea continues, and the count KEEPS GROWING, serving as added proof that Maddie TRULY is AOK!
I am reposting the journal entry I wrote ten years ago when I informed you all of Maddie's journey to heaven. As I reread my words, I am once again filled by Maddie's strength and love, and I am heartened to know that, although a long and winding road these past 10 years, Ashley, ChaChi, Keegan, and I continue to be rooted in the love, generosity, and vibrant spirit that Maddie sowed so abundantly.
May 7, 2003
Hello to all,
As many of you have already heard, my sweet Madeline passed away yesterday evening at about 6:30 PM. She was lovingly surrounded by many in her family. It was a beautiful, peaceful, gentle and grace filled moment- exactly the way Maddie lived every second of her fourteen years.
I have imagined this event, feared it, fought it and anticipated it so many times over the past year. Never would I have believed that my heart could be filled with such enormous peace. (I know what many of you are thinking, "Oh, she is in shock right now- the magnitude of her loss has yet to really sink in.) I assure you all, I am not in denial here, and I will miss the physical presence of Maddie more than any words can ever describe. But, Maddie has set the tone here. She has let me know in word and action how peaceful and accepting- and actually how excited- she is to move on to this next, permanently blissful and healthy phase of life. Without giving up hope for a earthly healing, in her own words Maddie assured me that the outcome of this journey was either "Good or better." Good, if she was to be fully healed here on earth and could get on with her fourteen year old life, and obviously better if she was rewarded with total healing in heaven. She went on to say that whichever the outcome, she knew that it would be the right one for her- and because we love her as much as we do, we would have to believe that it the right one for us, too.
This journal and guestbook meant the world to Maddie over the past year. She was able to share so much of herself and her journey with so many. I am so proud of the way that she made it her own, and I can tell you now how awkward it felt to me when I started to update for her. I couldn't post last evening- not because of my grief, but because I wanted my words to at least be a faint replica of the power and love that Maddie exuded every time she took to the keyboard. I was hoping for some profound words, or some symbolic story to come to me to share with you all. Instead I awoke today with the idea that I should write exactly as Maddie would- straight from the heart.
Maddie aspired to be a teacher. Her true love of learning was cemented the very first day of kindergarten, and her career path chosen. We converted an entire room of our house to accomodate the "schoolroom" from which she taught virtually every moment for several years. Many times throughout this year it struck me that she has already achieved her goal and is the greatest teacher I will ever know. I am so happy that I told her this many times. I will draw great strength from the many wonderful conversations and experiences Maddie and I have shared.
In true Maddie fashion, we had an impromtu party here last night. Several people stopped over- many without knowledge of her death, but intending another visit with her- and the joy, sadness, laughter and stories we were able to share is exactly what Maddie would have wanted. Max, Dannie, Austin and Liz stayed the night and we had a slumber party(or should I say no slumber party) in the family room- a room filled with more love than I can describe.
I could go on and on. I will close for now by saying THANK YOU to everyone for continuing to love and support us throughout this journey. We are so happy to share this with you all. We will post information once plans have been formulated.
With great love and gratitude,
Julie and Maddie
Thursday, January 16, 2014 3:31 AM CST HAPPY (24th) BIRTHDAY MADDIE!!!
I have loved you every single second since I found out that I was carrying you inside of me over 24 years ago.
I have missed having you physically here with me every single second since you went on to heaven.
I try to live my life in a way that honors you-- one filled with compassion, patience, enthusiasm, and LOVE. Some days I am more successful than others.
Today-- and every day-- I will try again to be the example that you, Madeline Taylor Paguyo, have set for all who know you. I will carry your song in my heart; I will put your smile on my face; and I will spread your love wherever I go.
I LOVE YOU TO THE MOON AND BACK MADDIE MO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Mom
Thursday, November 28, 2013 11:58 AM CST
From Maddie...
Saturday, November 22, 2003 10:38 AM CST
Hi everybody! Thanksgiving is sneaking up on us, and boy!, do we have a lot to be thankful for here at 4441 Colfax!
As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call that you get from your spouse every day. For all the loved ones that you hold close in your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have showed me how to be thankful, and what to be thankful for. So this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same.
Thanks--and I mean THANKS,
Maddie
Monday, November 18, 2013 12:01 AM CST Whenever I clean, I come across something that delights me, distracts me, or redirects me... today I came across a treasure that accomplished all three things!
When Maddie was in 5th grade, her class did a poetry unit. At the end of the unit each child wrote their own original poem. Here, courtesy of my cleaning day, is Maddie's:
My poem is active.
My poem is a shooting star in a midnight sky.
My poem is alive, awake, never to be dead or asleep.
My poem is a basketball that is being bounced and passed around.
My poem is an everlasting lightbulb, never to be turned off.
My poem is my own poem.
-Maddie Paguyo
Maddie continues to be very much alive in our hearts and in our daily lives--
look for her, and pass her love on!
XO
Julie
Sunday, April 28, 2013 8:30 AM CDT Diagnosis Day, April 28, 2003
As told by Maddie Paguyo
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. "Come on," I thought. "I want to go home."
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
"We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass."
The words all ran together from there. A brain tumor? Me? Why? I can't say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream;
survival rates, treatment plans, neurological tests, tears.
The shock was so great and yet the feeling was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July.
My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew. My legs shook like a toddler taking their first steps. My mother's arm turned purple as I grasped it in my sweating hands for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try; for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I'd forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
"Mom!" I tried yelling. Nothing came out. "Mom!" I fought through my coughing.
I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
"Maddie, are you okay?" my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I'd exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. "Pontine glioma," everyone around me was whispering. The same pain was still present. "Oww, make it stop," I remember saying, or maybe it was just a thought.
My mind was rolling with "what ifs" and "how abouts". On the outside I remained calm and unbelievably tolerant. I knew in order to get better, I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me.
With a smile on my face and all that pain inside me, I felt a warmness.I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on, whatever happens, happens. We can only fight for what is ours. We can't rewind time, we can't erase chapters in our lives, we just have to live them.
10 years ago our lives were turned upside- Diagnosis Day changed things forever.
Obviously, some things were very bad; most- all- were very difficult;
but as I reflect back to the year that passed between diagnosis and Maddie's death, I smile at the memories of some very amazing transformations we went through individually, and as a family.
We miss Maddie more than any words could convey- there are still times when the physical void and pain we feel literally leaves each of us feeling utterly helpless (I have accepted there always will be). When I find myself in the depths of grief and sadness, Maddie wraps her long, slender, loving arms around me and reminds me to look around at all the love and support that she so artfully and thoughtfully helped to build- my Maddie Mo certainly had a grand plan to buttress us with all that we would need to live our remaining earthly years well-cared for. Today the many bricks that came together to build a wall of support for a young 13 year old girl diagnosed with a horrific brain tumor still stand tall and strong- a wonderful reminder of Maddie's ability not only to unify, but to LIVE, encouraging us to pass our love and support along to all those who need it. In doing so, Maddie is very much alive in all of us.
Pass it on.
With love,
Julie, Ashley, Maddie, ChaChi and Keegan
Tuesday, February 26, 2013 8:49 AM CST The Struggle of the Butterfly
A man found a cocoon of a butterfly. One day a small opening appeared and he sat and watched the butterfly as it struggled for several hours to force its body through the little hole. Then it seemed to stop making any progress. It appeared it had gotten as far as it could. The man decided to help the butterfly, so he took a pair of scissors and snipped off the remaining bit of cocoon.
The butterfly then emerged easily, but it had a swollen body and small, shriveled wings. The man continued to watch the butterfly because he expected that, at any moment, the wings would expand and be able to support the body, which would contract in time.
Neither happened! in fact, the butterfly spent its whole life crawling around with a swollen body and shriveled wings. It was never able to fly. What the man, in kindness and haste, did not understand was that the restricting cocoon and the struggle required to get through the tiny opening were God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved freedom.
Sometimes struggles are exactly what we need in our life. If God allowed us to go through life without obstacles, it would cripple us. We would not be as strong as we could have been.
And... we would never fly.
Maddie Mo-
You are so strong!
Fly high. I miss you and love you to the moon and back!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Mom
Wednesday, January 16, 2013 10:03 AM CST HAPPY 23rd BIRTHDAY MADDIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
23 years ago you graced this world and my life, bringing more joy and sunshine than mere words could ever describe!
Although I miss your physical presence more than anyone can possibly imagine, I carry you with me everywhere I go- and you continue to shine "on me and with me"!
Today I celebrate YOU, Madeline Taylor Paguyo- all that you are and will always be! Happy, happy birthday!
I love you to the moon and back-
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Mom
Thursday, November 22, 2012 7:37 AM CST From Maddie...
Saturday, November 22, 2003 10:38 AM CST
Hi everybody! Thanksgiving is sneaking up on us, and boy!, do we have a lot to be thankful for here at 4441 Colfax!
As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call that you get from your spouse every day. For all the loved ones that you hold close in your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have showed me how to be thankful, and what to be thankful for. So this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same.
Thanks--and I mean THANKS,
Maddie
Wishing you all a wonderful Thanksgiving-
With love,
Julie , Ashley, Maddie, ChaChi, and Keegan
Thursday, September 27, 2012 7:49 PM CDT ChaChi for University of Minnesota Homecoming Queen!!!!!!!
It's been another long stretch of time since I have come here to write. What prompts my journalistic juices to flow this evening, you may ask...
ChaChi has been selected to the U of M Homecoming court, and is one of 5 girls in the running for queen!
Any of you who TRULY know Maddie know that she would be "ALL IN" with her support of her little sister's campaign-
There would be blogging, buttons, tee shirts, posters, and fliers. Songs would be written, parties would be hosted...this would be BIG! Maddie would recruit scores of supporters and oversee everyone's work, gently reminding them to give it their all, as that's what you do when you volunteer your help- and EXTRA SPECIAL attention would be expected since this was for her beloved ChaChi. Maddie would scrutinize every single promotional item PERSONALLY, not allowing a single detail to be overlooked- quality control measures would be stringently in place, as Maddie's protective nature would ensure ChaChi's shining spirit would twinkle brightly throughout the entire campaign.
Anyone of you who really know our family also know that, although we may fall a tiny bit short of Maddie's incredibly high standards, we, too, are "ALL IN" with our support for Charlotte! Keegan has posted a message on his Facebook page; Ashley has set up a Homecoming Facebook page for Chach (if you're on Facebook, go to her page and "like" her photo!), and Ash has come up with several other clever ideas to help spread the word.
I'm not on Facebook, and I don't "tweet," but today as I was thinking about how into this Maddie really would be, I decided to use this page to be her voice- I KNOW Maddie would want to lead the charge celebrating this exciting time for ChaChi!
So, on behalf of Maddie and myself- please help us spread the word:
Vote for Charlotte Paguyo!
#VoteYo
Voting is open to U of MN students between October 7-12.
Htpp://acevote.umn.edu
Monday, May 7, 2012 9:12 AM CDT Dear Maddie,
I intended to write to you here yesterday. In fact, all day I felt that I was somehow letting you down if I didn't mark the day with a journal entry, but I simply didn't pull it together.
Before I went up to bed last night, I read a story online about a family who had cared for their 14 year old adopted son as he was dying from a brain tumor- their shared love and collective presence as a family throughout his journey to heaven reminded me of our journey together.
I remembered your love, strength, and acceptance throughout the year after diagnosis. I thought about your wisdom and kindness and unconditional faith. I reflected on how gentle but definite you were with both your actions and words as you showed me that you were OK, and that it was my job to make sure that your brother, sisters and I knew that we would be OK here.
I reflected on the determined presence each of your siblings showed to you and each other and to me- regardless of the obvious sadness and pain that they felt seeing you physically transitioning out of their world and into the next. Ashley, Charlotte, and even then baby Keegan, made sure that you felt their presence, their connectedness to you, and their forever love for you- and each of them continue to live their lives with you very much a part of their here and now.
Eight years. You have been in heaven for eight years. The shape of the number 8 kept popping into my head yesterday. Two circles connected together... the symbolism wasn't lost. Our lives, and love, and connection to each other is forever. You are indeed in heaven, and the love of your friends and family fueled your journey there- but the love you gave so unconditionally to all of us remains here, too. I know with great certainty that it isn't just memories that connect us. Don't get me wrong- I LOVE the memories. We regularly share them- sometimes laughing, sometimes with tears filling our eyes- but always thankful for how many wonderful experiences we shared together. But I also know that you ARE here. I know you would move mountains if you had to to be near us (your signature song was, after all "Ain't No Mountain High Enough")- but I am sure that's not how it works. Like the number 8, heaven and earth are connected, and just as you remain in our here and now, we are in yours.
I fell asleep last night feeling a little less guilty about my inability to write to you yesterday, certain that you knew my thoughts. And, I woke up this morning resolved to put my thoughts down in a journal entry today.
I LOVE YOU MADDIE MO. I am forever grateful that you are, and always will be, my daughter.
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Mom
Sunday, January 15, 2012 6:54 PM CST HAPPY BIRTHDAY MADDIE ADDIE!!!!
Tomorrow, January 16, 2012 marks the 22nd anniversary of Maddie's birth. I SOOOOOOOOOOOOOOOO wish she was here physically to celebrate this incredibly special day with us!
Our family kicked off Maddie's birthday celebration a bit early by attending the opening night of The Lion King's current run here in Minneapolis this past Wednesday evening. This show holds a very special place in my heart- before opening on Broadway in 1997, it debuted in Minneapolis, and my sister, Sara, and I took Ashley (then 10), Maddie (then 7), and ChaChi (then 5) to see it. I can close my eyes and remember the girls' wide-eyed enthusiasm and pure delight as the show opened with the "animals" parading down the aisles toward the stage- and each of us sat on the edge of our seats trying not to miss any of the utterly amazing activity that entertained us throughout that magical evening.
Fast forward 15 years to last Wednesday night, and we were back in the same theater in virtually the same seats- Ashley (now 24), ChaChi (now 19), Keegan (9), Sara, our dear friend, Dave, and myself. We were sure to put Keegan in a seat right on the aisle, but didn't tell him what was about to happen when the lights went down...
I sat, eyes fixated on Keegan's face with so much excited anticipation as I waited for the back doors of the theater to open so that the parade of animals could begin- and trust me, his reaction of utter amazement did not disappoint! In that moment I was consciously aware that I am so blessed to be able to connect my family and where we are today to a virtually identical moment we shared 15 years ago... and lest anyone reading my words is feeling sorry for us that Maddie wasn't able to be there this go around, I assure you she was. Thoughts of her ran through my head throughout the entire evening- I could hear her belting out every song, and I could see her smiling while she danced along in her seat. The lyrics of certain songs touched me deeply- I truly felt that some of the words were written specifically for my ears:
CIRCLE OF LIFE (Music by Elton John; Lyrics by Tim Rice)
From the day we arrive on the planet
And blinking, step into the sun
There's more to see than can ever be seen
More to do than can ever be done
There's far too much to take in here
More to find than can ever be found
But the sun rolling high
Through the sapphire sky
Keeps great and small on the endless round
It's the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life
It's the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The Circle of Life
HE LIVES IN YOU (Music and Lyrics by Mark Mancina, Jay Rifkin, and Lebo M)
Wait, there's no mountain too great
Hear the words and have faith
Have faith
He (SHE) lives in you
He (SHE) lives in me
He (SHE) watches over
Everything we see
Into the water
Into the truth
In your reflection
He (SHE) lives in you
And, of course, one of Maddie's favorite to sing, the ever-uplifting HAKUNA MATATA (Music by Elton John; Lyrics by Tim Rice)
Hakuna Matata! What a wonderful phrase
Hakuna Matata! Ain't no passing craze
It means no worries for the rest of your days
It's our problem-free philosophy
Hakuna Matata!
Tomorrow will most likely be a low-key celebration with our family, as Maddie's friends are all back at their respective colleges right now. I've planned to make a family-favorite steak dinner; we'll have chocolate birthday cake AND Cheesecake Factory cheesecake (2 of Maddie's FAVORITES) for dessert; and we have a special way that we will send our birthday messages up to Maddie. Whatever else we may or may not do, it will certainly be a day fueled by the love we share with Maddie, so it will be a beautiful day!
WE LOVE YOU TO THE MOON AND BACK MADDIE!!!!!!!!!!!!!!!!!!!!
HAPPY BIRTHDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hakuna Matata.
With love,
Julie, Ashley, Maddie, ChaChi, and Keegan
Thursday, November 24, 2011 7:47 AM CST Saturday, November 22, 2003 10:38 AM CST
Hi everybody! Thanksgiving is sneaking up on us, and boy!, do we have a lot to be thankful for here at 4441 Colfax!
As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call that you get from your spouse every day. For all the loved ones that you hold close in your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have showed me how to be thankful, and what to be thankful for. So this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same.
Thanks--and I mean THANKS,
Maddie
Wednesday, August 3, 2011 12:02 AM CDT Maddie's best friend, Liz, recently sent me this wonderful essay she wrote for a college class. I asked if I could share it here, and she agreed. It is an absolutely perfect account of this story- and it brought both smiles and tears as I relived it.
THANKS LIZ!!!
**A PHOTO OF THE CHALK DRAWING LIZ DESCRIBES IN HER ESSAY HAS BEEN ADDED TO THE PHOTO PAGE**
Liz Shay
Creative non-Fiction
Art Response
Smeared Yet Beautiful
Everybody lined up at the door. We followed our teacher, Mr. Lundberg, with our hands behind our backs and our eyes focused on the silver line on the floor. The line was simply where the floor tiles fit together, yet they also served as our tracks, as if we were little trains that needed guidance. As second graders, we obeyed the rules religiously… okay, maybe only some of us did. We had little Adam in the back of the line stepping out of position, and Jason pulling Jessica’s pigtails. Xavier and Jacob had been separated because of a fight over crayons that broke out earlier that morning. And then there was Maddie. Who, of course, was the line leader. I followed directly behind her, trying my best to imitate my best friend. She stood behind Mr. Lundberg and was the picture-perfect example of how a second grader on their way to art class should look: Head up facing the front, hands clasped tightly behind her back and her feet on either side of the silver line. I can imagine little line judges in the hall way each holding up tens to rate her performance. The entire class behind her however, would have received fives.
We arrived at the art room and everyone flew out of the single file line and into the wooden chairs that were seated four to a table. The tables were covered in crayon, glue, glitter, and paint, despite the clear rules posted everywhere to “Clean Up After Yourself!” Ignoring the dirty tables, we grabbed our chairs and waved goodbye to Mr. Lundberg, after promising him that we would behave nicely. I plopped down next to Maddie; what kind of best friends don’t sit next to each other in art class? There was a large poster of Van Gogh’s painting of sunflowers taped to the black board and I stared at it in utter confusion. There was no way our art teacher was implying that we would be drawing that. The intricate lines and impossible details stared straight into each of our second grade eyes. Our ideas of details had to do with those stamp-markers that imprinted little animals or hearts onto paper.
Ms. Zutter handed out the large white paper and said:“You only get one sheet, so you only get two tries to do this right! You can use the front and back, but that’s it.” I stared at the paper and thought, “Ohh man, I’m going to need way more chances than that to get this right…” I looked around the room to see if my classmates had similar feelings of intimidation. Chaundera and Katelynn still hadn’t sat down yet because they were fighting over the cleanest chair. Jacob had drawn a huge line through Dannie’s paper and she was frantically erasing it while yelling at him.
After I realized none of my classmates had even began to think about the task ahead I sighed and looked at Maddie, hoping she would have a similar look of fear on her face about the daunting picture hanging on the black board. Her brown eyes were fixated on the painting and in her hand orange the chalk that had been previously put on our tables. She had already begun to copy the exact chalk strokes that Ms. Zutter had started. Panic struck and I rushed to catch up. Ms. Zutter broke down the incredibly detailed painting into simple circles and lines that we as second graders could follow, yet I still struggled. I looked at Maddie for guidance when I couldn’t get something right. She’d set her chalk down, look at mine and redo one of my lines or circles. It was as if she could fix everything, because every time she did that I liked my drawing a little more.
Days later we finished the project and there were nineteen mini-renditions of Van Gogh’s sunflowers. Maddie’s, of course, stood out but surprisingly the rest weren’t bad. As he hung up our pictures, Mr. Lundberg was like a proud parent who would hang his children’s scribbles on the fridge. The only difference being that these were actually good pictures, and instead of being displayed on the fridge, they were in the hallway.
Then horror struck.
Mr. Lundberg walked into our class and we sensed like drug-smelling dogs that something was not right. He had a look of anything but happiness on his face and slowly explained what happened. A first grader walked down the hall, humming along to a tune he had just learned in music class. He had his hand out and was brushing the wall. As the boy walked along, he didn’t take his hand off the wall while passing our pictures. The chalk smeared leaving huge finger smudges on our masterpieces. We were horrified: our hard work was ruined. As Mr. Lundberg broke the news to us, he led us into the hallway to see what that little delinquent had done. I stared wide-eyed at the smeared chalk. Maddie looked at them straight on, then tilted her head to the side, and then to the other side. She then smiled and said “I still think they’re beautiful.”
Then horror actually struck.
In May of our eighth grade year, my perfect best friend Maddie was diagnosed with an inoperable brain tumor. The doctors gave her a devastating prognosis of six months to a year to live. Instead of choosing to see the deadly beast as something that was sure to end her beautiful life, she chose to live through it.
After Maddie’s diagnosis, our lives drastically changed. We lived like never before. We were excused from class to spend time with our friend, whose headaches and double vision often prevented her from being at school. Our priorities also changed radically. We no longer worried about everyday petty middle school drama, and focused on really enjoying life. We did things like went out to eat, bowled, and had fun with arts and crafts. We made crazy videos and spent hours laughing until our sides literally ached.
In eighth grade I got a call to leave class because we were going out to eat. My friend Dannie and I were excused from class. We left our art room, looked at each other, and ran down the hall. As I ran I glanced down and I saw a line. The silver line that in second grade served as my guidance now had no purpose. The line we now followed had no set destination and we were forced to live not knowing where the line would take us. For the rest of our class, the line was now a stepping place for brutal middle school girls and boys going through the awkward-fitting-jeans stage and even more awkward-boy-girl-parties stage of their lives. Dannie and I followed the line, walked outside and saw Maddie in the driver’s seat of a car, sitting next to her mom. “Cooooool!” We squealed like newborn piglets as we jumped in the back seat and watched our thirteen-year-old driver press the gas.
When Maddie was diagnosed, her doctor painted a very difficult picture for her. It was more impossible than Van Gogh’s sunflowers and instead of an enthusiastic art teacher to guide her through the daunting task, she had a man in a white coat shaking his head and a nurse making sure she knew the truth: that no one had survived this tumor. Still, she looked at the painting, which happened to be a cat scan of her brain, and focused hard while others around her imitated second graders fighting over chairs, acting in utter chaos. She looked past them and got to business as usual.
Maddie’s house, or as we called it 4441, began throwing the best parties. They already knew how to throw parties, (I had firsthand experience because Maddie and I already had been having joint birthday parties together since we were seven), yet these parties topped the charts. We celebrated anything and everything, from holidays to Thursdays. Everything was a reason to get together and we cherished every moment.
On Maddie’s 14th birthday we partied hard. The door of 4441 was constantly opening and closing. People consistently trickled in and by the end of the night the house was packed. The guests were of all ages. Our parents were all there, as well as our choir teacher, art teacher and countless of our peers. I walked in and saw Maddie’s face light up. Her aunt had just surprised her with a huge 3 ring binder, made into a scrapbook of hundreds of letters and pictures made for her by friends and family wishing her the best. The music was playing loudly in the backroom and I headed back there. I passed the dining room table which was set up with all the food. There were desserts of all kinds, pizza, pasta, chips, and candy all over the table. As I grabbed my snacks, I opened the door to the backroom and saw 10 of my friends gathered around the karaoke machine. Two of them had a microphone and the rest crowded around watching the lyrics flash across the screen. I smiled and joined in singing to Christina Aguilera’s “I turn to you”. For a moment in time everything was good. But the bittersweet essence returned quickly. I wished that we didn’t need a reason to celebrate. I wished that we could all live blissfully in ignorance as we had before Maddie was diagnosed. I wished we could worry about smudges on chalk drawings, instead of smudges in real life. Realizing that was no longer a possibility, I tried as hard as I could to enjoy every moment, and seeing how we lived like rock stars that year, I did.
I remember one of the last parties we had at 4441 when Maddie was still there. She had been rapidly losing her short-term memory and I saw her asleep more than awake. Friends gathered in the backroom as usual and we danced and sang our hearts out. We played “Ain’t No Mountain High Enough” and yelled the words, pointing at Maddie, hoping she would realize there was nothing that was going to keep us away from her. I glanced at her and she smiled. I knew what she was thinking of our masterpiece of a party.
“People are people. They are not perfect. Everyone has problems and everyone has challenges. But, some challenges just aren't worth creating. So live your life and cherish all that you have. Remember what not to get worked up about. And count each day as a blessing.” Maddie wrote that in her journal the day after her last birthday party. She loved her life, smudges and all and lived it to the fullest.
It was smeared, yet still beautiful.
Wednesday, April 27, 2011 7:03 PM CDT Tomorrow, April 28, marks the date, 8 (EIGHT??!!) years ago that Maddie was diagnosed with a deadly brain tumor. How is it that I can recall the details of this horrible day with such precision, but struggle to remember specifics of happier moments?? This past Saturday, April 23, marked Ashley's 24th birthday. As we were enjoying a lovely brunch out to celebrate, the kids asked me to tell them funny stories about each of them from when they were little. I honestly drew a blank for quite some time... and many pictures remain very fuzzy- yet this, a day in the running (on the very short list) for "most horrible day in my life," remains in hyper-focus. Crazy.
This time of year stirs up so much emotion in me.
Spring is such a hopeful season- our looooooong winter is finally over with the snow now melted- grass is turning green, leaves are budding... new life is showing itself everywhere. On a walk 2 days ago Keegan and I came across our first butterfly of the season, truly putting a smile from ear to ear on both our faces!
As I've mentioned, Saturday was Ashley's 24th birthday. (She is now one year older than I was when I had her!)
I move right from that to the dreaded "Diagnosis Day" which inevitably causes a pretty substantial emotional dip. Then May 6- another tough day- will hit, with the 7th anniversary of Maddie's death...ups and downs, smiles and tears...life.
As I've often shared, I turn to Maddie herself during some of my more trying times. I find such comfort, strength, and LOVE in her words. Her wisdom and her faith fill me when I'm empty. So, again I will share the essay Maddie wrote describing her diagnosis day, and the events that followed shortly thereafter that led her to reclaim her life and her self from the clutches of that stupid tumor.
MADDIE'S ESSAY:
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. "Come on," I thought. "I want to go home."
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
"We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass."
The words all ran together from there. A brain tumor? Me? Why? I can't say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream;
survival rates, treatment plans, neurological tests, tears.
The shock was so great and yet the feeling was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July.
My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew. My legs shook like a toddler taking their first steps. My mother's arm turned purple as I grasped it in my sweating hands for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try; for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I'd forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
"Mom!" I tried yelling. Nothing came out. "Mom!" I fought through my coughing.
I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
"Maddie, are you okay?" my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I'd exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. "Pontine glioma," everyone around me was whispering. The same pain was still present. "Oww, make it stop," I remember saying, or maybe it was just a thought.
My mind was rolling with "what ifs" and "how abouts". On the outside I remained calm and unbelievably tolerant. I knew in order to get better, I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me.
With a smile on my face and all that pain inside me, I felt a warmness.I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on, whatever happens, happens. We can only fight for what is ours. We can't rewind time, we can't erase chapters in our lives, we just have to live them.
Maddie lived each chapter of her life very well indeed.
I toy with the idea of writing down "Diagnosis Day" from my perspective some day... maybe next year.
I will try to write again next week.
With love,
Julie- mom to 4 amazing children- Ashley, Maddie, ChaChi, and Keegan
Saturday, January 15, 2011 9:51 PM CST Dear Maddie,
21 years ago tomorrow, January 16, 1990, VERY early in the morning, you burst into this world, changing it, and me, forever! I am profoundly grateful that God chose me to be your mom!
In anticipation of your birthday, we have been talking a great deal about how we can celebrate the day best to reflect your enormous, generous spirit.
I clearly remember the party we had to mark your 14th birthday- the last one you were physically here with us. Jan came all the way from Florida; Aunt Alyce put together that amazing scrapbook of messages from people near and far; and you opened our doors to EVERYONE to come celebrate your special day! We sang, ate, laughed... and then we sang, ate, and laughed some more!!!
So guess what?? In true Maddie style, that's the way we'll celebrate the 21st anniversary of your birth tomorrow night- an open house for all of our family and friends who can make it- JUST THE WAY YOU WOULD HAVE PLANNED IT! We will sing, eat, and laugh...and then we'll sing, eat, and laugh some more! We will toast you and the remarkable impact you continue to have in our daily lives. We'll share stories about you, and we'll send our special wishes up to you. We will celebrate YOU- just as I have every single day since you graced my life 21 years ago. Undoubtedly there will be a few tears, perhaps buckets of them, but I promise the day will be marked with a gigantic celebratory spirit, befitting you.
In honor of this very special day, I have written something especially for you, Maddie Mo. Here goes:
21 Things I Love About You (in no particular order)
I love:
1. that you are kind to absolutely everyone
2. your quirky, sometimes naughty, sense of humor
3. your boundless sense of wonder
4. your big brown, saucer-like eyes
5. your extraordinary intelligence
6. your bravery
7. your joyful singing (even in public!)
8. your expressive writings- what a gift you've given us!
9. your long, slender fingers
10. how helpful you are
11. your optimism- and the way you spread it
12. how hard you work to make this world brighter
13. your amazing artistic talents
14. the little freckles on your nose
15. your faith, and that you share it with me
16. your athleticism
17. the silly games you play
18. your unbridled love for life
19. your persistence
20. the way you freely show affection
21. that you convey your love for us with such strength
Maddie addie, these are but 21 items on a list that could go on and on forever- in fact it does, as I think of you multiple times daily, reflecting on how full my life is, in large part to you (and, of course, Ashley, ChaChi, and Keegan)! I truly am the luckiest mom in the world.
I love you to the moon and back, Madeline Taylor Paguyo!!!!!
I miss you more than words could ever say-
Come to us in our sweet dreams.
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Mom
Thursday, November 25, 2010 10:34 AM CST A THANKSGIVING MESSAGE FROM MADDIE:
Saturday, November 22, 2003 10:38 AM CST
Hi everybody! Thanksgiving is sneaking up on us, and boy!, do we have a lot to be thankful for here at 4441 Colfax!
As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call that you get from your spouse every day. For all the loved ones that you hold close in your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have shown me how to be thankful, and what to be thankful for. So this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same.
Thanks--and I mean THANKS,
Maddie
HAPPY THANKSGIVING EVERYONE!!!
Miss you, Maddie- we love you to the moon and back!!!!!!
Thursday, May 6, 2010 9:52 AM CDT Dear Maddie,
It has been six years since you left this earth to take your spot in heaven, and I have missed your physical presence every single day since then- what an understatement!!
Standard letters usually begin with the question,
"How are you?"
But, as I have often shared in conversations throughout these past six years, I don't have to wonder how you are, I KNOW you are MORE than fine- you are perfect, you are in heaven.
When you were born, I remember being mesmerized by your big, brown, saucer-like eyes. They are the most expressive eyes I have ever looked into. I realize now that was no accident- they served as a window into your beautiful, pure, loving, and faithful soul. God gave you those eyes as a tool to reflect his enormous love for each of us, and every time I looked into them, I got a glimpse of heaven. The peace that comes with knowing where you are will sustain me until the day I join you there.
In most letters, "How are you?" is usually followed by, "I am fine." (it's funny, we often write, "I am fine" no matter how we are really feeling) Well, Maddie-mo, the truth is, I REALLY am fine- in all honesty, I'm quite well. That's not to say that I don't get sad sometimes- of course I do! No matter how sure I am that you are right where you are supposed to be, I'm human- I'm your mom, and I can't help wishing you were physically right here with me! But, I also know that God gave us a heart to feel a rainbow of emotions- that's part of being human. It is only by feeling joy and sadness, pleasure and pain, love and loss... that we have the perspective necessary to TRULY appreciate our lives. I allow myself to feel whatever it is I am feeling in the moment, aware that to deny myself that would diminish the richness and depth of the life I've been given.
I owe a great deal of thanks to you, my sweet girl, for my perspective. You lived your life so fully, shared of yourself so generously, and loved so completely, that when you went to heaven I knew you possessed the peace and joy you needed to fuel your flight. Throughout your 14 years you gave so much of your loving self to me that a part of you stayed right here, living in my heart. I often find myself easily conversing with you- asking your input, advice, or ideas about one thing or another, and actually hearing your answers. I know that I can count on your promise to always be by my side, as I truly feel your presence.
Just as you live in me, I see you in Ashley, ChaChi, and Keegan.
Ashley shares your deep compassion for others. Like you, she is committed to making this world a better place for everyone. I bet you are traveling right now with her throughout Africa, a smile from ear-to-ear, meeting so many amazing people, seeing such beautiful land, and experiencing so many new things! Please keep those big eyes open for Ashley, helping her and her companions to steer clear of danger. (remind her to wear her bug repellent, too!)
ChaChi shares your wit, and your ability to immerse yourself completely in whatever occasion before you. ChaChi's silliness often brings a great deal of laughter into our house, and her friendship with Grace reminds me so much of you and Liz. Always quick to wear the most outrageous costume, decorate a theme-fitting tee shirt, or make the perfect poster for an event, she took the title of "Most School Spirit" this year- an award I imagine you would have proudly accepted.
Keegan shares your social ease- he makes friends readily, and is kind to absolutely everyone. Like you, Keegan makes whoever he is with at the moment feel as if THEY are his very best friend in the world. And, like you, he has impeccable radar when it comes to me and how I'm feeling, instinctively knowing when I may need a kiss, hug, or a gentle back rub. He is my special buddy, just like you.
I know you are proud of your sisters and brother, and I'm quite certain, knowing the enormity of your love, that you will continue to guide them, support them, and accompany them, as they walk their journey on Earth.
I know that you are with all your family and friends, who love and miss you so dearly.
"Love is a gift of one's inner most soul to another so both can be whole."
-Tea Rose
In closing, Maddie-addie, you gave each and everyone who shared in your life your inner most soul, and in doing so, you left us all more whole than we often realize. You are a gift to us all.
I love you, I miss every inch of you, and I can't wait until I am reunited with you eternally. In the meantime, send us butterflies and visit us in our sweet dreams.
Love, love, love.
Mom
Friday, April 23, 2010 8:27 AM CDT Another LOOOOOOONG stretch since my last update... certainly that isn't because there hasn't been a lot going on- there ALWAYS is A LOT going on- just procrastination on my part.
Today's journal entry is going to be short-and-sweet. I will update at greater length in a few days. Today I am focusing (almost) my full attention on my darling daughter Ashley. It is her GOLDEN BIRTHDAY- it is April 23, and she is 23 years old today!!!!!!!!! I can't believe that it has been 23 years since she was born, but I do know that my life changed the instant she came into my world. We all spend a great deal of our lives hoping to find our purpose... mine became crystal clear on April 23, 1987. I am blessed to be Ashley's mom (and, of course, Maddie's, ChaChi's and Keegan's, too) and I could not be happier with the purpose God gave me!
Ashley is currently traveling throughout eastern Africa with an organization called The Kickabout, so she is not here physically to celebrate her GOLDEN day with us. This, of course, does not sway me from the urge I have to mark the day in celebration, so I have invited some of her dear friends to come to Ashley's birthday party tonight at our home, knowing she will certainly be with us in spirit (hopefully we will be able to SKYPE with her!).
HAPPY BIRTHDAY TO YOU.
HAPPY BIRTHDAY TO YOU.
HAPPY BIRTHDAY DEAR ASHLEY.
HAPPY BIRTHDAY TO YOU!!!!!!!!!
I encourage everyone to go to thekickabout.org to read up on Ashley's amazing adventure, and to leave her happy birthday wishes.
And, if you are reading this Ashley...
I love you to the moon and back... a zillion times, and I miss you soooooo much, and I am sooooooooooooooooooo proud of you!
Be safe, be you, and have a blast!!!!!!!!!!!!!
With love,
Julie-Ashley's, Maddie's, ChaChi's, and Keegan's mom
****Loving wishes for Maryah (caringbridge.org/mn/maryah),
Emma (caringbridge.org/visit/emmafogarty), and
Cari (caringbridge.org/visit/carihadac)****
January 16, 2010 Happy birthday to you, happy birthday to you, happy birthday dear Maddie, HAPPY BIRTHDAY TO YOU!!!
Today you would be 20 years old... UNBELIEVABLE! We love you and we miss you sooooooooo much!!!!
Visit us in our sweet dreams, Maddie.
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
***Follow Ashley on her adventure at thekickabout.org***
MERRY CHRISTMAS!!!!!
Wow... it's been AWHILE since I've sat down to type a journal entry! As I've already shared, I check this site EVERY SINGLE DAY, but it takes everything aligning just right for me to write...
Every year since Maddie's death, quite a bit of thought goes into making our family Christmas card. The trick for me is to find a way to include Maddie in the card, and I'm happy to say, that each year I've managed to come up with a concept that I'm very pleased with- this year is no exception. I stumbled across a quote some time ago that I immediately KNEW would be the message that I would build the card around:
Children will not remember you for for the material things you provided, but for the feeling that you cherished them.
-Richard L. Evans
We used an array of photos showing us loving each other over the years and put them into a collage-front and back- on the card. I'm honest enough to share that I shed many tears as I went through hundreds of photos to narrow our choices, but through the tears there was also great joy remembering all the wonderful moments and stages that we have shared together as a family. Ashley did a FANTASTIC job formatting the card. This is the holiday project that means the very most to me personally.
I can honestly say that since becoming a mom I have known how blessed I am to fulfill this role that God has entrusted me with- every single day of those almost 23 years has been a gift to be cherished. That's not to say that it has always been easy, peaceful, happy... but even in the most difficult of times, I have carried a joy deeply rooted reminding me how truly fortunate I am to be the mom of Ashley, Maddie, Charlotte, and Keegan.
The year that Maddie was sick we had plenty of wonderful conversations in which Maddie would tell me how much she loved her life- her family and her friends were so very dear to her, and she was so good projecting an attitude which left no doubt for anyone in her life how much she truly cherished them. As she reflected on things, her focus was never on "the stuff," rather it was always on the shared experiences and the love and joy that those experiences brought. I take great joy in knowing that Maddie knew how greatly she was cherished, too.
This holiday has been wonderful.
Charlotte and I have spent a couple late nights and EARLY mornings alone together kicking around at the mall looking for the "perfect" gift and the best bargains for the people on our lists. I realized when we were out late the other night how special this time really is- ChaChi is a senior in high school this year, debating where she'll be attending college in the fall, so who knows if we'll have that opportunity next year??
I'm happy to say that she has heard from the schools that she has applied to (so far), and has gotten in to each of them, so she has several great options. She seems genuinely excited to be on the brink of this next phase of her life.
The sweetest holiday moment I experienced this year was shared with my now 7 year old, Keegan. He asked if the two of us could go out shopping for his sisters. We walked into Target and he headed first to the jewelry department. After looking around for awhile, he said that he would "keep a couple of things in mind," but would like to look around some more. So, we walked through the entire store; looking at clothing, electronics, gadgets, and toys... after almost an hour, he said that he'd like to go back to the jewelry department. Once there, he picked up a sterling silver ring with peace sign carved into it. He walked up to me and announced that he had made his selection for Ashley saying, "I want Ashley to have this. It means that there will be peace on earth, so she'll be safe in Africa." (more on that tidbit in the next paragraph about Ashley) I told him what a beautiful thought that was, and suggested that he write that in his card to her. Next he chose a pair of sparkling hoop earrings for ChaChi. He told me that he would write to her that "the earrings sparkle like your personality"- but after much internal debate, decided to tell her that they "sparkle like your heart." Needless to say, my heart swelled with pride and joy for my beautiful boy, and tears filled my eyes. Keegan is truly one of the kindest, gentlest, loving souls you could ever meet.
About Ashley and Africa...
I have not had a lot of time with Ashley as of late- she has been working quite a bit and trying to find time to see her relatives and friends before she leaves on January 10 for a 6 month trip, driving overland through Africa. Actually, the trip begins in London, where the group will pick up the specially equipped vehicles, and then they will work their way to Cairo and travel along the Nile, reaching Johannesburg, South Africa in time for the World Cup in July, making several stops along the way. She is going with "The Kickabout"- a very small start-up nonprofit group, that is riding the wave of enthusiasm that the World Cup has brought to Africa, with the intent of using soccer as a way to bring awareness to the rest of the world about the wonderful people of Africa and the challenges that many face every single day. Ashley is a fabulous writer, and a big adventurer, so she jumped at the chance to go along as the "resident blogger." While I am thrilled for her and the amazing, life-changing opportunity this presents, I have reminded her that I will not sleep a wink the entire time she is gone... I'll make sure she posts how you can follow her blog here before she leaves. (Now you understand just how precious Keegan's gift to Ashley really is!)
I am really well. I continue to work as a substitute teacher- often with Charlotte and her friends as students- and work with a friend's 11th grade son as a private tutor. I love what I'm doing, and it offers enough flexibility that I am able to volunteer a fair amount in Keegan's classroom, which he absolutely loves.(as do I) Life is good- AND I miss Maddie's physical presence. It's a balancing act, to be sure. Thankfully, we keep Maddie very much in the present by talking about her, sharing stories, looking at photos, wearing special clothing and jewelry of hers...I bought a gift for someone that came with a quote that sums up perfectly how I feel about my love for Maddie- and Ashley, Charlotte, and Keegan:
"Love is the place in the heart where we cannot know where we end and the one we love begins"
Thank you for continuing to check in on us.
We cherish the gift of each of you in our lives.
With love,
Julie, Ashley, Maddie, Charlotte, and Keegan
Thursday, August 13, 2009 8:50 AM CDT WOW!!!
It's been quite a long while since I've sat down to journal. I come to this site every day- some days several times- and I've reminded myself on more than one occasion that I should take a few moments to update, but I've drawn a blank again and again.
Today isn't really much different- other than that blank or not, I've decided to write...
6 years ago we were living a "summer-on-steroids". Not literally, Maddie, having been diagnosed in April, was enjoying a bit of a "honeymoon" period. The tumor had responded well to radiation therapy; meaning it had been stunned enough to allow Maddie a solid chunk of time virtually free of symptoms of that dastardly beast. Taking only the non-toxic alternative treatment we were trying, Maddie was free of all "make-you-feel-crappy" medicines; no chemo, no steroids. I refer to 2003 as our "summer-on-steroids" because of how we lived that particular summer- BIGGER, FULLER, more URGENTLY.
Thinking back, I recall how hopeful we were. This cannot be understated, as I think most of you understand by now that the diagnosis we received was horrific- conventionally speaking, NO hope of survival- somewhere between 6-12 months. Period. Yet, when I reflect back, I can see in my mind's eye the broad smiles on our faces- I hear the silly chatter and the robust laughter we shared- I remember the countless "everyone's invited" parties we threw with wonderful music, scrumptious food, and love and friendship filling every corner of our house; and I think to myself, "How blessed we were to find a way to fill ourselves with HOPE and FAITH." Not ignorant to what the doctor's had told us- simply believing with all our hearts that we were going to be blessed with our miracle. We chose to LIVE: BIGGER, FULLER, URGENTLY- and I'm so thankful we did.
I remember a conversation Maddie and I had with one of her healthcare providers who was under the impression that, as joyful as we were, we couldn't possibly have grasped the prognosis we had been given. She felt it was her job to clarify things for us- she couldn't allow us to remain blissfully ignorant of this beastly tumor that was going to rear its ugly head sometime very soon, certain to take Maddie's life. Maddie did not waiver- she stated her complete faith that things were going to be OK. I responded that we understood the diagnosis and its prognosis completely, but that every one of us gets to choose how we are going to live- diagnosis or not. We can live with fear strangling our hearts, or we can allow our hearts the freedom that comes when we fill them with faith, hope, and love. We had simply chosen the latter, and by our estimation, it was a far better way to live.
The other night I had dinner with a very good friend who I have not spent much time with this past year or two. So, as friends typically do, we caught each other up on our families. She is the type of friend who will always bring Maddie into our conversation, knowing that for me, Maddie is a part of my every yesterday, today, and tomorrow. I'm blessed to have friends like her. As I reminisced about the year of Maddie's illness and the time that has transpired since she died, I told my friend how thankful I am for God's grace. I am human-and probably more flawed than most- yet there are so many distinct moments during that time period where I know God filled me with His grace and gave me the words, or the patience, or the strength... that I needed at that exact moment to handle what for my flawed human self would have been impossible. The conversation above- and even more significantly, the fact that we were able to push that darn diagnosis aside and live so fully- are two great examples of God's grace.
6 years ago, Maddie was about to enter her 8th grade year. ChaChi was about to join her at the middle school as a 6th grader. Ashley was about to begin her junior year of high school, and Keegan was not even a year old.
Today, Ashley is a COLLEGE GRADUATE, ChaChi will start her SENIOR YEAR on September 1, and Keegan will begin 1ST GRADE! The kids are well. Ashley is a bit overwhelmed trying to chart her course post-college. She's not sure what she really sees herself doing and she feels pressed to figure it out. She has a bill-paying job, but not a career job yet. In addition to her paid job, she has just begun a part-time internship with a PR agency (her degree). As stressed as she feels, I feel completely confident that she will find her way to a path that will lead to a happy life. She is smart, passionate, beautiful, and kind-hearted. She has all the tools necessary to have a wonderful life.
ChaChi is thrilled to be a senior. Just as I've reported over the years I've been journaling, she balances social, soccer, and school life well. Where I've shared that Ashley is pressed to chart her course, I'd say Chach may not be stressed enough to chart hers. She seems very laid back in her approach to the college search. I'd love to see a bit more fire and passion from her in regard to this, yet I do appreciate that her personality lends itself to being far more relaxed. I'm trying to impose some urgency on the process. We'll see how successful I will be...
Keegan is a joy. He is ready for 1st grade both academically and socially. He has become an excellent reader, has a great sense of humor, understands things quickly, and makes friends easily. He's a good little athlete, and his dad and I will again be coaching his soccer team this fall. He is a strong-willed boy- one of those "let-me-do-it" kids- which I'm sure comes at least in part from spending so much time with his much older sisters and their friends. He also has a heart-of-gold. He is compassionate and kind, and he is so in-tune with my feelings, showing his love for me and his family readily.
Life is good. I miss Maddie. That's how it is. My joy and my sadness walk hand-in-hand. There is room for both, and for all the other emotions that life brings. My heart is big enough to lovingly hold my old memories, while constantly making room for new ones. It's a relief to realize that although a piece of me went along to heaven with Maddie, I kept part of her right here with me- and since she was so full of love, the part of her that I kept with me more than compensates for the part of me that traveled with her.
“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.”
-Pericles
Maddie is woven deeply and completely into my life.
With love,
Julie- Ashley's, Maddie's, ChaChi's, and Keegan's mom
Wednesday, May 6, 2009 8:38 AM CDT
A butterfly lights beside us like a sunbeam...
and for a brief moment its glory
and beauty belong to this world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all.
-Author Unknown
Maddie,
It has been 5 years of missing your physical presence- your silly sense of humor, your gentle confidence, your sympathetic shoulder, your generous embrace, your boundless energy, your uninhibited joy, your incredible intelligence, your effortless ability to give of yourself, your earthly beauty, your grace, your unshakable faith...
When I close my eyes I can see your broad, beautiful smile (with the special tooth); I see those big, beautiful brown saucer eyes; I see your long, delicate fingers; the wispy baby hair that frames your face; I see the ears you inherited from me; that teeny, tiny waist of yours; your slender arms, and long, lean legs...
When I get real quiet I hear your wonderful giggle; I hear you belt out a song; I hear you playfully telling Keegan to always remember you; I hear you say "I love you" to us all; I hear, "I'm fine mom, keep going, don't stress"...
When I lie in bed at night, I can feel you- I think of all we were able to do when you were here, and I smile, laugh, and cry. I feel you filling me with strength... It's as if you are taking those long, slender arms of yours, and reaching down from heaven to wrap them tightly around me, enveloping me in your calm peace, your abundant faith, your boundless hope and your unending love...
I am so blessed to be your mother. You have given, and continue to give, me so much.
I'm often asked the question, "How many children do you have?" And I proudly answer that I have 4 amazing children. Some who hear this exchange get a bit fidgety both by the question and the by my response... but for those who TRULY know us , who TRULY know you, the answer rolls right out-
You know I will never leave you, and I know you will never leave me, or Ashley, ChaChi, Keegan- or your countless family and friends... we carry each other inside of us, permanently intertwined...
As Keegan says, every night, while he and I blow you our goodnight kisses, "We love you Baboo, come to us in our sweet dreams; your mother misses you, our whole family misses you... even... Jude."
Love you Maddie T-
xoxoxoxoxoxoxoxoxo...
Mom
Sunday, April 26, 2009 4:43 PM CDT Hello.
Today marks the 6th anniversary of Maddie's diagnosis, and May 6 will mark 5 years since Maddie's spirit took its heavenly flight.
Unbelievable.
We just celebrated Ashley's 22nd birthday. She will graduate from the University of Minnesota on May 17. She is waiting to hear back on a few internships she has applied for- one would take her back overseas...
ChaChi is winding down her junior year of high school. Spring soccer has just begun for her. Between schoolwork, soccer, friends, and working, she is a busy, busy girl.
Keegan has almost completed kindergarten. He is such a fun kid- smart, funny, active and sweet, all rolled into one!
I'm hanging in there. I'm on a bit of an emotional roller coaster- missing Maddie, yet thrilled for Ashley, Chach and Keegs with all their joys and accomplishments. This time of year is especially trying.
I thought I'd share Maddie's essay as tribute to her and her unbelievable handling of the hand dealt her. I love her and miss her with every fiber of my being.
******************************************************************************
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. "Come on," I thought. "I want to go home."
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
"We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass."
The words all ran together from there. A brain tumor? Me? Why? I can't say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream:
survival rates, treatment plans, neurological tests, tears.
The shock was so great and yet the feeling was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July.
My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew. My legs shook like a toddler taking their first steps. My mother's arm turned purple as I grasped it in my sweating hands for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try; for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I'd forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
"Mom!" I tried yelling. Nothing came out. "Mom!" I fought through my coughing.
I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
"Maddie, are you okay?" my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I'd exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. "Pontine glioma," everyone around me was whispering. The same pain was still present. "Oww, make it stop," I remember saying, or maybe it was just a thought.
My mind was rolling with "what ifs" and "how abouts". On the outside I remained calm and unbelievably tolerant. I knew in order to get better, I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me.
With a smile on my face and all that pain inside me, I felt a warmness.I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on, whatever happens, happens. We can only fight for what is ours. We can't rewind time, we can't erase chapters in our lives, we just have to live them.
******************************************************************************
Thank you for continuing to check in. I'll update again very soon.
With love,
Julie, Ashley, Maddie, ChaChi, and Keegan
Monday, January 5, 2009 8:14 AM CST January 16
HAPPY BIRTHDAY MADDIE!!!!!!!
I was remembering how fast you came into the world on January 16, 1990... almost didn't make it into my hospital room. I wonder now if you already secretly knew that you had a LOT to do in a short time...
WE LOVE YOU AND MISS YOU!!!
XOXOXOXO...
Mom, Ashley, ChaChi and Keegan
Happy 2009!
Stretches between updates are getting longer and longer... I still plan to keep Maddie's an active site(relatively speaking), but writers block often prevents me from updating.
I come here daily, just as I have since Maddie's CaringBridge page was first established in April of 2003. It connects me- to the many friends who we have made since this journey first began on April 28, 2003, when Maddie was diagnosed; to a bevy of memories- both happy and challenging-that have been chronicled here; and to Maddie herself. When she was alive, this was Maddie's site. She owned it. She kept us informed, she shared incredible insight, and she drew so much strength from the number of visitors who checked in on her and from their encouraging words. Just as it did for Maddie, this site stregthens and comforts me.
The holidays, and the two week break ChaChi and Keegan enjoyed from school because of them, have come and gone (Ashley is off from school until January 20th). As a family, we spent quite a bit of time together and managed to find several fun things to do with our extended family and friends. This year we decided to try to get back to the true essence of Christmas, focusing on shared experiences. We went Christmas caroling, bowling, ice skating (Keegan's first time, and he wants everyone to know that he didn't use the double-runners- he was up and moving very well on single blades in no time!), and spent a ton of time at home playing Jenga, Connect Four, Guess Who... and having "Dance Offs" in the family room. Ashley, ChaChi and Keegan have developed wonderful relationships with each other, and I feel truly blessed to be their mother.
As lovely as our time together can be, there is a constant ache that even heightens for me this time every year. I MISS MADDIE, every day, every second. The New Year holiday is especially painful for me... there is something about moving into yet another year without Maddie that hits me like a ton of bricks. I manage, every year, to do the whole noise maker, watch-the-ball-drop, stroke of midnight "Happy New Year" thing; but every year there is a gnawing in my stomach and lump in my throat as I do so.
I came across a Buddhist tale in a book that sums up pretty succinctly where I find myself, almost five years after Maddie's death.
The tale is about a woman who is in agony over her daughter's death. Having heard that Buddha was capable of miracles, she went to him, begging for her daughter to be brought back to life. Buddha promised he would help her- but only if she could bring him some mustard seed from a home that had known no sorrow.
The woman set out on her search, filled with hope. But as she knocked on door after door, she heard one sad story after another. The mother realized that suffering was universal. No human on earth could escape sorrow and loss.
This brought the greater understanding that what happened to her, painful as it was, was an inevitable part of life.
As the author of the book summarizes, "She was now able to accept the blow life dealt her- not fearfully, angrily, or passively, but simply, with all the fullness of her genuine grief. Her pain might continue to throb for the rest of her life- but it no longer determined her thoughts or actions. She found some freedom, and ultimately, some joy- not in spite of her pain, or even because of it, but simply along side of it."
I am this woman. I am consciously aware of the suffering of so many. I continue to stay connected to many friends who have also lost their children, and their pain is palpable. I check in on friends whose children are nearing the end of their earthly journey, and their agony becomes mine. I follow many whose children are doing very well, post-diagnosis, and their constant fear of the disease returning is a fear I recognize all too well, and it zaps my energy.
As we rang in 2009, the gnawing in my stomach and lump in my throat was clearly there. I fought back tears... but I did so consciously aware of the twinkle in Keegan's eyes, pleased as punch that he had managed to stay up until midnight (and beyond) ; aware of ChaChi, still dressed beautifully from her earlier outing, wearing glittered "2009" glasses and "Happy New Year" hat, snapping photo after photo to mark the moment; knowing that Ashley had also dressed herself up and gone out to celebrate with a good friend...
Ashley, Charlotte, Keegan and I all miss Maddie more than any words could describe. But we, too, manage to find joy- not in spite of our pain, or even because of it, but simply along side of it.
Maddie's birthday is January 16. She would be 19. We will find a way to celebrate her life, as we have every year since she graced this earth in 1990.
Wishing everyone a very blessed new year.
With love,
Julie, Ashley, Maddie, ChaChi and Keegan
Monday, October 27, 2008 8:13 AM CDT Good Monday morning!
Another long stretch of time has passed since my last update. For those of you who check in on us, we are all doing well- busy, busy, but well.
Keegan started kindergarten in September and he absolutely LOVES it! Following in his sisters' footsteps, he is an enthusiastic and quick learner, a social butterfly, and a delightful, respectful child. He enjoys all areas of school, but when pressed, he'll tell you he's most excited about science class. His current plan is to be an archaeologist when he grows up. He is reading every sign, comic strip, magazine cover... he sees, sounding out the tough words as he goes. Although having very specific personal attributes, he does remind me so much of Maddie at the same age.
Keegan's dad and I coached his fall soccer team- all 3 of us enjoying it thoroughly. Keegan is quite an athlete, so in addition to spending "fun" time with him, it also allowed for some "proud parent" moments. Having cheered for Ashley, Maddie and ChaChi for years and years, I know Keegan's athletic endeavors will provide me with entertainment far into the future, allowing for plenty more of those prideful moments.
ChaChi's junior year of high school is in full-swing.
I've always believed that we learn a lot about who we really are by how we choose to react to adversity. ChaChi worked so hard this summer, going to extra training sessions whenever she could, to prepare to take the field as a real leader on her high school soccer team. In the very first scrimmage she rolled her ankle, spraining it severely, taking her out of the mix for almost a month. Instead of leading on the field, she found a way to lead off- cheering from the sidelines, attending every practice, patiently resting her ankle to allow for proper healing, and then working hard to get back on the field to contribute the last part of the season. I am so proud of the positive attitude she maintained- I can't say I would have been so patient.
ChaChi has also begun testing the college waters. Last weekend, she went with a group to tour several schools in Chicago. She enjoyed the experience immensely, and came back with some solid ideas about what she will look for when she begins the application process. It's absolutely unbelievable for me to think she's as old as she is. She got her license right after her birthday in August (first try!- she's a very good driver!), and she started a job at Target last week. As busy as she keeps herself, she still manages good grades AND plenty of sleep... if I could just get her to keep her room clean she'd be the perfect child!
This is Ashley's SENIOR year of college- yes, I said my daughter will graduate from college this May. I've been going through a lot of family photos lately, and I honestly remember her as a "little Ashley" as if it were yesterday. Talk about a time warp. Her plan is to start a foundation in Maddie's honor, but she's also informed me that she'd like to travel for some time after graduation, before joining the "real working world"- something about studying dance in Africa, yoga in India... you get the idea- the way I hear it, it amounts to another of many sleepless months in my life since becoming a mom!
Ashley continues to be very socially and politically motivated- treating this election season as if it were Christmas, her enthusiasm so great. She just got home last night after meeting up with several friends in Chicago for a "fun" weekend, and managed, after a 9 hour bus ride, to pull an "all-nighter" to prepare for school today. Needless to say, she, too, has a healthy balance of work, school and fun... now if I could just get HER to clean up after herself, SHE would be the perfect child...
I am doing quite well, myself. I am back substitute teaching, and I love it. I teach quite a bit at ChaChi's high school, and when I do, she always comes and eats lunch with me. I love the ever-changing nature of my job, and enjoy working with children of all ages. Every day is exciting. I am also doing a great deal of private tutoring, so I am happily busy.
My sister, Sara, who we live with, has decided to do some home renovation. So, when I'm not at work, I'm busy moving furniture, rolling carpets, cleaning floors... you get the idea... and as the rooms come together, home is feeling quite nice- which is wonderful, as the temperature outside is changing rapidly and drastically, ensuring many indoor hours ahead.
I met a very special girl last week, and I encourage you to stop by her web page to read her story and offer your support. Her grateful, positive attitude reminds me of Maddie's. caringbridge.org/visit/emilytucker.
Maddie remains a part of my every day. The other night, after we had blown her our nightly kiss, Keegan wrapped his arm tightly around my neck and asked, "Mom, do you remember when you used to cry ALL the time?" I told him that I did, and that although I still miss Maddie terribly, I've learned to contain my tears, keeping them more and more to myself, trying to allow for as many joyful moments for everyone as I can. He stayed quiet for a moment, then he told me, "Mom, it's OK with me if you need to cry when you're with me." As tears rolled down my face, I thanked him.
We thank you for continuing to check in on us, and for keeping Maddie's undying spirit alive in your lives.
With love,
Julie- Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, July 1, 2008 8:06 AM CDT Writer's block. That's what it's called. I've been stumped regarding what it is I should write about, therefore the delay...
4 years ago, when Maddie died, she was a 14 year old girl nearing the end of 8th grade. That next fall, her friends entered high school; Ashley began her HS senior year; Chachi moved on to 7th grade; and Keegan was 3 months shy of his 2nd birthday. I was a grieving mom, uncertain not only how, but if, I would be able to keep moving into the future caring for Ashley, ChaChi and Keegan well, while missing Maddie so desperately.
Here we are, 4 years later. Maddie's friends just graduated from high school, have gone through the exciting (sometimes agonizing), process of selecting a college, and are preparing to make the move from home to campus. Ashley will begin her senior year at the University of Minnesota. She will graduate with a journalism degree, focusing on PR and Marketing. Her plan is to open a non-profit in Maddie's honor, where she will help other families confronting challenges similar to ours. ChaChi will settle into her junior year- the one I consider to be the most academically challenging- with soccer and socializing as cornerstones to provide necessary fun and balance. Keegan, who is now 5, will be cruising on to kindergarten. Growing up with so many people loving him, he has all the confidence, social skills, as well as physical and cognitive abilities, needed to guarantee a wonderfully smooth transition.
I am a grieving mom. Still. Always. Maddie's illness and death steered me from my pre-brain tumor path to the one I find myself on now. I willingly allow my grief to hold hands with all of the other emotions and experiences life brings my way. To deny it would be foolish- to allow it to totally consume me would be disastrous. I miss Maddie's physical presence with every breath I take; but I simultaneously celebrate that of Ashley, Charlotte and Keegan. I am tremendously blessed by my relationships with my family and some amazingly wonderful friends. And I am exceedingly blessed by Maddie and the many gifts, both tangible and intangible, that she left me with.
After the death of one of her Caringbridge friends, Maddie left the following guestbook entry:
"Reading all the guestbook entries today just confirms the beautiful ways Julia is among us, as a butterfly, an angel, or what not. Sometimes, when I am all alone, I feel as though I am not. You know that feeling? I know she is here with me, with us. I can almost sense her, angel wings and all, watching over me, watching over all of us. I know it must be terrible to not be able to hold her, to see her, but I believe she is holding you at this time, and she is watching you too."
Thankfully, through the unbreakable bond that Maddie and I share, I truly know the feeling she described.
So, we keep moving. Maddie took part of me with her when she went to heaven, and I kept a part of her here with me. We are permanently cemented, and I know, with great certainty, that I will keep on keeping on.
Have a beautiful day.
With love,
Julie- Ashley's, Maddie's, ChaChi's, and Keegan's mom
Thursday, March 27, 2008 10:59 AM CDT UPDATE APRIL 23
21 years ago (did I say TWENTYONE?!!!)
I became a mom for the first time when Ashley Ryan Paguyo entered the world... on that day my purpose in life was revealed through this tiny, perfect, amazingly beautiful little girl. I am so proud to say that she has grown into an awesome young woman- chock full of beauty, brains, compassion and grace.
HAPPY BIRTHDAY, ASHLEY!!!! I am a so glad that we were paired to walk through this world together!
I love you to the moon and back!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Mom
Another long overdue entry...
The prologue to "The Alchemist," by Paulo Coelho, tells the story of Narcissus, a boy who knelt daily beside a lake to contemplate his own beauty. He was so enthralled with himself that one day he fell in and drowned. The story goes on to say that the goddesses of the forest went to the lake and discovered that its fresh water had been transformed into a lake of salty tears. When asked why it was weeping, the lake replied that it cried for Narcissus. The goddesses answered, "...it is no surprise...for though we always pursued him in the forest, you alone could contemplate his beauty close at hand." The lake responded, "I weep for Narcissus, but I never noticed that Narcissus was beautiful. I weep because, each time he knelt beside my banks, I could see, in the depths of his eyes, my own beauty reflected."
How wonderful that both Narcissus and the lake had found a means to discover their own beauty- yet how unfortunate that intent on searching solely for their own beauty, they missed out on experiencing the greater beauty of their surroundings.
Reading this tale got me thinking a lot about Maddie- highlighting, yet again, how greatly her life has blessed mine.
I am quite certain Maddie was aware of her own beauty. However, unlike Narcissus, it was a humble awareness- not an ounce of conceit or boastfulness, just a quiet self assuredness- Maddie radiated gentle strength, grace, joy... love, and her immense beauty- both inward and out- was evident to all.
From the moment I laid eyes on her, I was mesmerized by Maddie's beauty. Looking deep into her gigantic, dark brown eyes was like looking through a window to her sweet, generous soul, and every time I did I saw my own beauty- her love so pure and encompassing she stretched my heart and elevated my capacity to love.
Maddie's wonderful life, and her untimely death, has given me great perspective and appreciation for how fleeting our time here really is, and for the necessity to make that time meaningful and beautiful. Ashley, Charlotte and Keegan each possess their own unique beauty, blessing me with three more pools to see my own reflection in.
Many of you know of the tile painting Maddie initiated. Curiously, one of the last words Maddie chose was "reflect". She painted the word perched on a lily pad,with its reflection in a pond below. As I watched her paint, I thought she had chosen this word because she was reflecting on the life she was about to move on from. Now as I look at the tile, I see it as something else. Maddie's beauty lives on in all of us- she shared herself so willingly and so abundantly and we are a reflection of her love. We have been enlisted, by Maddie, to continue to use our lives as a beautiful pool of water, allowing all who kneel beside our banks to see their own beauty and pass it on.
BEAUTY IS ETERNITY GAZING AT ITSELF IN A MIRROR.
-Kahlil Gibran
From my beautiful family to yours-
With love,
Julie, Ashley, Maddie, Charlotte and Keegan
Thursday, February 14, 2008 7:20 AM CST
I LOVE YOU ASHLEY, MADDIE, CHACHI, KEEGAN
OH YES I DO
I DON'T LOVE ANYONE
LIKE I LOVE YOU
WHEN YOU'RE NOT NEAR ME
I'M BLUE- BOO HOO
OH ASHLEY, MADDIE, CHACHI, KEEGAN
I LOVE YOU!
OH YES I DO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Happy Valentines Day to the loves of my life-
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Mom
Wednesday, January 16, 2008 8:13 PM CST HAPPY BIRTHDAY TO YOU,
HAPPY BIRTHDAY TO YOU,
HAPPY BIRTHDAY DEAR MADDIE,
HAPPY BIRTHDAY TO YOU!!!!
Happy 18th birthday, Maddie! We love you and miss you sooooooooo much, and are thinking about wonderful YOU today, as we do every single day.
Love you bunches and bunches...
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Thursday, November 22, 2007 8:53 AM CST
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity... It turns problems into success, the unexpected into perfect timing, and mistakes into important events.
Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow."
-Melodie Beattie
This Thanksgiving I find myself celebrating without the physical presence of THREE of my four children. Keegan has gone to Florida with his dad to visit his Grandma and Granddad, Ashley, who is studying in Madrid this semester, is spending her Thanksgiving holiday in Morocco!!!, and Maddie, of course, is experiencing yet another blissful day in heaven.
ChaChi and I are "holding down the fort" here at home.
When I first began imagining this time several weeks ago, I thought it was going to be unbearable if we weren't all together. I would often say, out loud, how hard the holidays will be this year.(ChaChi and Keegan will trade places at Christmas, when it will be ChaChi traveling to Spain to visit Ashley, and Keegan here alone with me.)
Then one day I had an epiphany. Of course I will miss whoever is not here with me- anyone who really knows me knows that I am most content when all of them are near. BUT, I also love my children enough to realize that their lives will be truly enriched by each amazing experience that they are afforded, and I feel so blessed that they are all confident enough in themselves, and in our unbreakable family bond, to venture out and grab the opportunities presented them, knowing that we all travel together in spirit. I look forward to hearing their stories, seeing their travel photos, unwrapping their souvenirs- and more importantly- hugging them when they return... knowing full well that other adventures await each of them... they are growing up, and I am so thankful for what wonderful children, and people, Ashley, Maddie, ChaChi and Keegan are!
I am also incredibly grateful for my parents and siblings, who continue to love and support me and my kids both in word and in kind action- I can never express fully just how much they do for us.
I so appreciate the many friends who rally around us, and who so lovingly and gently let us know that we are never alone- even when we are the only one home. I know, always, that a dear friend is only a short car ride or a phone call away, and carrying you all in my heart brings me more strength and peace than you can imagine. There are so many people who bless our lives in so many ways, we have much to be thankful for!
From our family to yours- HAPPY THANKSGIVING!
With love and gratitude,
Julie, Ashley, Maddie, ChaChi and Keegan
Monday, October 15, 2007 11:15 AM CDT Good Monday morning!
Wow, it has been a bit since I last updated... thank heavens for those of you who give me gentle prompting through the guestbook.
Where to begin...
Let's start with some BIG, WONDERFUL, EXCITING, JOYFUL news...
Susan, Mark and Colton Griffin (Jake's mom, dad and little brother), have welcomed TWO new members to the family!!!
Katherine Jude (Kate) and Cannon Thomas were born on September 26 increasing the noise level, diaper count and sleep deprivation to unimaginable heights, I am sure, but more importantly bringing even more love, happiness and contentment to one of the most wonderful families you could ever know!
Maddie and I first "met" Susan, Mark and Jake shortly after we received Maddie's diagnosis, which Jake also shared. Our friendship grew as we spent countless hours on the phone and email getting to know each other. Maddie grew to love Jake and his parents very much, and when Jake died, just one month before her, Maddie was gifted a "little brother" in heaven to take good care of when she joined him. At the time of his death, Jake was the only child Mark and Susan had. Colton came along almost two years ago, and now Kate and Cannon have added immeasurably to their joyful chaos. Susan commented only recently how crazy she thought I was- with FOUR children and all that entails- when we first met. Now she has joined the ranks of my club, and I could not be happier for her and Mark!!! Please stop by their site to congratulate them! caringbridge.org/visit/jakegriffin
Alright, now on to a quick update on our family...
Ashley, a junior in college, is studying this semester in Madrid- and from her emails and phone calls, she is having a FANTASTIC time and taking full advantage of her experience. The clever girl that she is, she figured out right away how to schedule her classes so that she is finished on Thursday every week, ensuring that every weekend is a 3 day stretch.
She is taking quite a few mini trips with the time she created, traveling throughout Spain, to Portugal and, just this past weekend, traveling to Norway. I THINK she is attending classes and doing homework, as well, but regardless, these experiences will add to her ongoing education of life, and I am so very happy for the opportunity she has so fully embraced.
ChaChi just finished her high school soccer season. While the team wasn't as successful as I am sure they hoped to be, she had a great time and really enjoys the girls she plays with. Winter soccer training begins in November and she will be playing high school basketball again this year, but is taking this week off before diving both feet into that season. Homecoming was last week, and she was named the tenth grade princess. Keegan thought it was pretty neat to see her riding in the parade- especially enjoying the extra handfulls of candy thrown his way! Chach has definitely seen an increase in challenge and amount of homework this year, but true to her personality, she finds a healthy balance of schoolwork, sports and social life- my house frequently filled with the loud chatter and laughter of teenage girls and boys!
Keegan is doing so well. He is in school now 5 mornings a week, and really enjoying it. Many of his new classmates do not speak English as their first language, and I am so proud of the way he has figured out how to communicate with them through other means. I volunteer at least once every week in his class. It is so wonderful to see how happy and proud he is to have me there, and I am grateful for the time I get to spend both with him and with his friends. Some of you may know that I went to college with the intention of being a teacher, and when I am in a classroom environment I feel quite at home. Keegan continues to be a sweet child with a great sense of humor and a compassionate heart- as he continues to grow up and find his independence he does at times assert his will (which is sometimes quite strong)- but he always finds a way to circle back and let me know how much he loves and appreciates me.
The "Humor to Fight the Tumor" event that Maddie was honored at took place Sept. 28, and it was such an amazing and highly successful evening! There were over 500 people in attendance, and our family and friends were well represented- we filled 3+ tables- one entirely with Maddie's friends. Having worked on the planning committee and with Maddie being recognized, I wore two very distinct hats.
Thankfully, both felt very comfortable. At one point, I had to go up on stage to talk about a special fund that we were hoping to create through additional donations that night. Keegan sat next to me throughout the dinner and program, asking frequently when it would be my turn to speak. I let him know that it was about to be my turn, and he insisted that he was going up on stage with me- now remember, there were over 500 in the room with us! I explained that he could wait with one of his aunties, and he asked if I was talking about Baboo (Maddie)- saying that if I was, he was going up with me... so up to the podium we went. I have to say, feeling Keegan's hand on my back throughout my talk turned what was uneasy nervousness into a steady calm. I spoke clearly, confidently and passionately about Maddie and our journey, feeling, through Keegan's gentle touch, the collective love and presence of all four of my children, my family, my friends and the countless people we have met through this experience. The audience responded with unbelievable generosity, establishing a solid place from which to launch a program that will help to emotionally buoy and uplift families as they navigate through the challenges illness inevitably brings. The next morning, I found myself alone with Keegan, recounting the events of the past evening. When I mentioned how proud I was of him for going up onto the stage with me in front of sooooo many people, he responded, "Mom, I knew you were nervous, so I wanted to do that for you- and I wanted to do it for Baboo, too!" I'm telling you, he is a very special little boy!
I continue to challenge myself to find ways to share Maddie's wonderful spirit and story with others. This event was a great vehicle for me, and I am very grateful for that.
As always, thank you for checking in on us. We truly appreciate your love and support.
With love,
Julie-Ashley's, Maddie's, ChaChi's and Keegan's mom
Thursday, August 16, 2007 6:03 AM CDT "Keep your faith in all beautiful things; in the sun when it is hidden, in the spring when it is gone."
-Roy R Gilson
This particular journal entry has been percolating in my head for sometime. In spite of- rather because of- ongoing personal, local, national and world-wide challenges and tragedies, I think it necessary to remind myself that beauty truly is all around us, and if we can keep our eyes, minds and hearts open, it is revealed even in the most difficult moments. Never was this made more clear than the days leading up to Maddie's death.
As you can imagine, watching Maddie physically decline was heart wrenching for me- words could never possibly communicate the pain, sadness, helplessness and complete devastation that I felt. As I type these words, I am reliving those feelings all over again. For those of you who followed our story back then, you probably remember that we spent the last weeks of Maddie's life almost exclusively in our family room- the true heart of our home- surrounding Maddie, and each other, with constant love, attention and support. As the reality took hold that our time together with Maddie was fleeting, we savored every second that we had together- I remember consciously trying to etch certain images permanently in my brain...
I thank God for the time we had together in Maddie's waning days. The moment I first became a mom, over 20 years ago with Ashley's birth, I felt so blessed and privileged to be entrusted the care of my precious children. That blessed privilege took on miraculous new meaning as I cared for my dying daughter. Some of the most beautiful experiences in my life took place the last few weeks of Maddie's. As her physical strength weakened, Maddie needed help with virtually everything. I devised ways to help her eat and drink so as not to choke, learned ways to best help her up if needed, kept her blankets clean and smelling fresh, her pillows plumped... and Ashley and Charlotte watched me attentively, gaining comfort and strength so that they, too, could share in her physical care. Throughout her illness, Maddie loved me to massage her hands and feet with special lotion, and her scalp with a specific tiny comb every night as she would prepare to sleep. Desperately needing ways to show her my love, I thank God for that established ritual, as it provided me and her sisters an ongoing sensory avenue to lovingly connect with her. Watching Ashley and Charlotte care for Maddie with such devotion truly was a thing of beauty.
The last 5 days of Maddie's life she was in a coma. Our house was constantly filled with my kids, extended family, and friends stopping by to offer us their support and to see Maddie- each visit knowing that it may be their last with her. One rare morning, I found myself alone with just Maddie and Keegan, who was only a year and a half at the time. Keegan and I were playing together next to Maddie, who was lying peacefully motionless on the couch. I left the room briefly to refill my coffee cup in the kitchen. I walked back into the room to witness one of the most beautiful events I have ever experienced... Keegan was standing at the head of the couch, tiny comb in hand, stroking Maddie's hair, ever so gently, as he had obviously observed me and his sisters doing countless times before. Although just a baby, he, too, felt compelled to physically connect with his sister, obviously wanting to impress his love for her in a concrete way. Truly amazing...
One last moment of beauty I will share took place in the wee hours of the morning, just days before Maddie's death. I'm pretty certain that I didn't sleep at all the last few weeks of Maddie's life, not wanting to miss a moment, and Ashley was a fairly regular companion of mine while the rest of the house slept. This particular night, Ashley was sitting at the computer and I was lying next to Maddie when I began to observe the most amazing physical transformation. Admittedly, I am a biased mother, and I have always thought my children are the most beautiful in the world... Just days away from dying, rather than looking worn and sickly, Maddie's appearance took on a greater beauty than ever before- I actually called Ashley over and asked if she saw it, too, which she did- it was if Maddie was illuminated, all of her features softer and more beautiful than you can imagine. Another blessedly beautiful gift.
"Never lose an opportunity of seeing anything that is beautiful, for beauty is God's handwriting- a wayside sacrament. Welcome it in every fair face, in every fair sky, in every flower, and thank God for it as a cup of blessing."
-Ralph Waldo Emerson
A quick family update-
Ashley leaves in less than 2 weeks for her semester abroad in Madrid. She is so excited- I am freaking out a bit at the thought of her being so far away for so long, but am truly thrilled for the opportunities and experiences that lay ahead for her.
ChaChi is in the throws of high school soccer tryouts- exhausted and anxious, as the teams will be set in the next few days. I think she is excited to begin her sophomore year, happy to no longer be the youngest in the school.
Keegan is a year off from starting kindergarten, not turning 5 until late November, but he is enrolled in a program that mirrors the 1/2 day kindergarten calendar exactly, and he is quite excited. I took him over to his new school the other day to play on the playground and he was thrilled.
I am working on a fundraiser that is taking place on Sept. 28th that raises $ for brain tumor research, awareness and patient/family services. Maddie is being honored at the event, so I am simultaneously passionate and emotional in this endeavour.
So we press ahead to the start of another school year and all that that entails.
As always, we appreciate your continued love and support, drawing strength from it often.
With love,
Julie-Ashley's, Maddie's, Charlotte's and Keegan's mom
Saturday, June 30, 2007 8:55 AM CDT For those of you still checking in on us, I apologize for the overdue journal entry.
I have found myself in several settings in the past two months that have encouraged me to share Maddie and our story with new audiences. Introducing Maddie and the rest of my family through snipits of our life together, I am reminded of how immensely Maddie continues to impact others- even those who are meeting her for the very first time, three years after her physical death- and I am certain that it is our responsibility and privilege to continue to share her amazing spirit with others throughout our lifetimes.
There is a never ending list of things that evoke an immediate, physical connection to Maddie: the smell of "Johnson's Bedtime Lotion"; the taste of filet mignon; an image of Princess Diana; school supplies; a butterfly... and two songs, more than any others- "Ain't No Mountain High Enough"- specifically the original version, sung by Marvin Gaye and Tammi Terrell, and "Over The Rainbow/ What A Wonderful World" as performed by the Hawaiian artist, Israel "Iz" Kamakawiwo'ole.
In 2001, while in 5th grade, Maddie and her girlfriends painstakingly choreographed a dance routine to "Ain't No Mountain..." to perform in the school talent show. From that point on it became her signature song. My friend, Joelle, shared with me an ironic connection to this song- Tammi Terrell, who I've mentioned sang the original version of this song with Marvin Gaye, died in 1970, only 24 years old and at the height of her career, from a malignant brain tumor.
In 2002, while watching an ER episode, Maddie became hooked on Iz's version of "Over The Rainbow/ What A Wonderful World." This song played in the background while the character of Dr. Mark Greene, who was dying from an inoperable brain tumor, stood in the ocean, scenes from his life flashing through his mind. Maddie loved this music so that she burned copies of it for everyone.
When making Maddie's memorial video, we selected "Over The Rainbow..." as the perfect opening song, placed two additional inspirational songs in the middle, and closed with Maddie's musical signature, "Ain't No Mountain High Enough." Whenever we hear these songs, there is an immediate, powerful connection to Maddie- Keegan referring to them as "Baboo's Songs."
This September, Maddie, along with 3 brain tumor survivors, will be honored at a local fundraiser, "Humor to Fight the Tumor." This event, now in its 4th year, is the brainchild of a wonderful woman, and now a very good friend, Joelle Syverson.(caringbridge.org/mn/joellesyverson) Joelle was diagnosed in 2001 and lives with an operable, but incurable brain tumor- clearly the source for her decision to raise $ to help fund brain tumor research, awareness and support services.
A few weeks ago, Keegan and I went to a gathering of honorees and families, set up to introduce us to each other and to talk a bit about the videotaping that would be done as a vehicle to share our stories to those attending the gala this fall. To make us a bit more comfortable with the storytelling piece, videos from the past three years were played. As the first one began, Maddie's version of "Over The Rainbow..." filled the room. Keegan, both wide and teary eyed, looked at me and said, "Baboo's song!" I could barely hold it together. We left there and the two of us headed to a street festival that I knew would be fun for him. The minute we got there, we found the ticket booth, located right by the performance stage set in the street, so Keegan could get quickly to the giant slide he had spied. Just as we got to the front of the line, a gradeschool choral group began to perform on the stage next to us. Their angelic voices belted out the words to "Ain't No Mountain High Enough," and Keegan and I froze, almost paralized by the moment and our desire to completely take in our connectedness to Maddie. Once the song past, we enjoyed an incredible day filled with rides, cotton candy, games and more.
We are blessed by these ongoing physical connections to Maddie, as they offer such comfort and remind us of the unbreakable bonds of true love.
"What is there to do when people die- people so dear and rare- but bring them back by remembering?"
-May Sarton
As always, with love,
Julie-Ashley's, Maddie's, ChaChi's and Keegan's mom
Sunday, May 6, 2007 7:29 AM CDT Madeline Taylor Paguyo
January 16, 1990 - May 6, 2004
THE DASH
I read of a man who stood to speak
at the funeral of his friend.
He referred to the dates on her tombstone
from the beginning...to the end.
He noted that first came the date of her birth
and spoke of the second with tears,
but he said that what mattered most of all
was the dash between those years.
For that dash represents all the time
that she spent alive on earth,
and now only those who loved her
know what that little line is worth.
For it matters not how much we own;
the cars, the house, the cash.
What matters is how we live and love
and how we spend our dash.
So think about this long and hard,
are there things you'd like to change?
For you never know how much time is left,
(You could be at "dash mid-range.")
If we could just slow down enough
to consider what's true and real,
and always try to understand
the way other people feel.
And...be less quick to anger,
and show appreciation more
and love the people in our lives
like we've never loved before.
If we treat each other with respect,
and more often wear a smile,
remembering that this special dash
might only last a little while.
So, when your eulogy is being read
with your life's actions to rehash...
would you be pleased with the things they have to say
about how you spent your dash?
...Linda Ellis
Maddie lived her life sharing unsurpassed joy, incredible humor and wit, extraordinary compassion, amazing grace, unbelievable intelligence, powerful strength, assured faith and PURE love...
She spent her dash very well indeed.
With love,
Julie-Ashley's , Maddie's, Charlotte's and Keegan's mom
Tuesday, April 17, 2007 11:06 AM CDT "Nothing can make up for the absence of someone we love... It is nonsense to say that God fills the gap; God doesn't fill it but on the contrary, God keeps it empty and so helps us keep alive our former communion with each other, even at the cost of pain... The dearer and richer our memories, the more difficult the separation. But gratitude changes the pangs of memory into a tranquil joy. The beauties of the past are borne, not as a thorn in the flesh, but as a precious gift in themselves."
- Dietrich Bonhoeffer
Today as I checked Maddie's guestbook, I read a message from Julie Sample, Jeffery's mom.(caringbridge.org/fl/jeffery) Jeffery passed away just one month ago after living with a brain tumor for several years. Julie commented on how specific my memory of certain events is, and how fuzzy her memory is right now. What Julie cannot possibly understand at this stage in her grief is that time has given me the perspective I now have- and additional time will allow that perspective to continue to evolve. Just as the writer I have quoted suggests, my memories of Maddie, which are dearer and richer than I can express, make our physical separation extremely difficult for me, her siblings and all who love her so deeply. When Maddie first died, my pain was not only gigantic, but excruciatingly raw as well, and I know I felt like I was living in a thick fog. With time I find that although my grief and sadness have not diminished, they have learned to walk hand-in-hand with peace and tranquil joy. I recognize the beautiful gift my memory of past times Maddie was physically here with us is, and today those memories come to me readily, the fog having lifted.
We are coming up on a few monumental dates in our family's life.
April 23 is Ashley's 20th birthday... Did I say 20?! How can that be?!!! She is finishing up her 2nd successful year of college, and is planning on spending fall semester abroad in Madrid- exactly what I did the fall semester of my junior year! Maybe my perspective is still a bit askew, as I feel sometimes like there is NO WAY that much time has elapsed since I was in college myself! I could not be prouder of the amazing daughter and person Ashley is, and I am genuinely excited to see all the wonderful things this next decade of her life holds in store for her.
April 28 is diagnosis day. Four years ago on that date our lives were turned upside down and inside out. I remember virtually every detail of the day... enough said.
May 6 marks the 3rd anniversary of Maddie's death.
Keegan and ChaChi are doing well. (except for the 3 or 4 staples Keegan had put in his head yesterday after an unfortunate encounter with a coffee table!) Keegan is getting so big, he has boundless physical energy, a wonderful sense of humor and is very compassionate. He is truly my "best buddy."
ChaChi heads to Iowa this weekend for a soccer tournament. She is also playing spring basketball, continues to do extremely well academically and manages a very healthy social life- OK, that ever swinging perspective pendulum has shifted already... there is NO WAY I could possibly muster the energy her youth provides!
A dear friend of mine is partnering with me to finally get Maddie's book off the ground. I have intended to compile her words post-diagnosis for some time- letters, poems, essays, guestbook entries to others offering encouragement and love- and we have resolved to get it done.
Keegan and I are planning an event together, too. We have decided to plan "Keegan's Karnival"- date still to be determined, but work already in progress. Many of you know my past experience planning school carnivals, and Keegan and I think it will be fun (on a smaller scale) to have one in our own back yard! While we're still kicking around ideas, I'm thinking we may do it as a small fundraiser for the scholarship fund we have establised in Maddie's name.
Watch for upcoming info!
That's it for now.
We are tremendously grateful for the onging love and support you provide.
With love,
Julie-Ashley's, Maddie's, ChaChi's and Keegan's mom
Tuesday, March 13, 2007 11:22 AM CDT When we come to the last moment of this lifetime, and we look back across it, the only thing that's going to matter is
"What was the quality of our love?"
- Richard Bach
Just a month before Maddie died, I took my three girls and two of their friends to Las Vegas- Maddie's Wish Trip was supposed to be to Paradise Island, but it was obvious we weren't going to make it to that, so with the help of some very generous friends, we created our own "Wish Trip."
I look back on that trip now amazed by all that transpired in 4 short days. Maddie's health was clearly fading. Her left eyelid was heavy, her short term memory shot and she was moving very slowly...
We arrived at the Minneapolis airport to depart and found ourselves in first class- much to Maddie's delight.(I still have no idea how that happened, as I booked the tickets, and traveling with a party of 6, DEFINITELY did not pay for the upgrade!) We were off to a great start.
The friends that had gifted us the $ for the trip made sure that we had enough to stay at one of the nicest hotels Vegas has to offer- "The Hotel at Mandalay Bay." The suite was incredible, we ate the finest meals, had access to the swanky "Four Seasons" pool- where they sprayed cool Evian water on our faces and served us chilled fruit poolside- I said "yes" to any/everything the kids asked for- it was as incredible a trip as you could imagine, yet one of the most challenging times in my entire life, with some very poignant moments.
It was on that trip, one morning very early as the other 4 slept, that ChaChi and I strolled the grounds and I explained to her that Maddie was dying. As obvious as her progression was to me, Charlotte was only 11 and was convinced that Maddie was going to somehow get better. I walked a tightrope- telling her what I was seeing and feeling, but also saying that I would continue to do EVERYTHING humanly possible to try to help Maddie get better physically. I told her how much I love her and her siblings- with every fiber of my being- and how the immense love we share, combined with that of our family, friends and God was going to sustain us throughout whatever was to happen. It broke my heart to literally watch as the realization that she may very well lose her beloved Maddie took over ChaChi's expression.
Another wonderful friend had gifted us all tickets to see "Blue Man Group" while we were in Vegas. Maddie was simply too exhausted to go. Luckily, one of my girls' uncles who lives in CA had driven to surprise us with a visit, so I sent him with the others- telling Maddie that I was really pooped myself, and an evening alone with her, ordering room service and watching "American Idol" in bed sounded absolutely perfect.
SEVERAL times while we were alone Maddie asked where everyone had gone. Each time she thought she was asking for the very first time, so each time I tried to answer as if she was. I didn't want to frustrate her, and truth be told, I would have gladly answered the same question a million times...
Finally, she picked up on the fact that she might be repeating herself, and she said, "Have I already asked you that?"
I hesitated for a moment, and then told her that yes, she had. I explained that it didn't bother me at all, but asked if her short term memory loss was difficult on her. She replied that it was, saying that she couldn't remember from one moment to the next where she had been, what she had done... if she had even eaten or not. Again, internally my heart crumbled, but instantly a grace that must have been God given took over.
I told her not to worry about the "wheres" and the "whats"- as her mom, that was my job, and I would be absolutely sure to help her, and the rest of us, live in the moment, making the absolute most of every single second.
After acknowledging what she couldn't remember, I asked her the most important question of all.
"Maddie, can you remember all the people who love you and who you love, and how powerful that feeling of love is?"
In an instant, the look of frustration that she had when explaining how difficult it was to struggle with her memory was replaced by pure contentment- of course she could remember the names and faces of every single person who she loved so very dearly...
When we come to the last moment of this lifetime, and we look back across it, the only thing that's going to matter is "What was the quality of our love?"
- Richard Bach
I live every single moment missing my beautiful daughter's physical presence. I also live, every single moment, profoundly grateful that her incredible spirit continues to grace my life. I am blessed to share a depth of love with her, her siblings, my family and some very special friends that runs deeper than words can express.
How fortunate I am to have shared Maddie's moment of reflection of the quality of the love she knew in her earthly life. It is a moment I will never forget.
With love,
Julie- Ashley's, Maddie's, Charlotte's and Keegan's mom
Wednesday, February 14, 2007 3:05 PM CST
I love you Ashley,
Maddie,
Charlotte,
Keegan
Oh yes I do
I don't love anyone
Like I love you
When you're not near me
I'm blue (boo-hoo)
Oh Ashley,
Maddie,
Charlotte,
Keegan
I LOVE YOU!!!!!!! (oh yes I do)
You are the BEST valentines anyone could ask for!
xoxoxoxoxoxoxoxoxxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Mom
Tuesday, January 16, 2007 9:22 AM CST
"A butterfly lights beside us like a sunbeam...
and for a brief moment its glory
and beauty belong to this world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all."
-Author Unknown
HAPPY 17th BIRTHDAY MADDIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Your light continues to shine brightly in each of us who love you so very much and the glorious beauty you shared throughout the 14 years you were physically here with us will never be forgotten.
I love you, I love you, I love you...
XOXOXO...
Mom
Friday, December 22, 2006 7:37 AM CST THE PHOTO HAS BEEN ADDED TO ALBUM
"All God's angels come to us disguised."
-James Russell Lowell
When Maddie was about 5 we attended a birthday party at "The Discovery Zone"- one of those "human habitrail" places where kids climb through tube mazes, dive into ball pits and jump in "moon walks." While climbing through the tubes, Maddie crawled to a domed window, caught my attention, and I snapped a seemingly "ordinary" photo of her enjoying herself. The picture became an obvious favorite of hers- making its way into several school projects and onto many decorated book covers and collages in the years that followed.
When creating Maddie's memorial boards, Ashley had to narrow her selection from hundreds of photos- that "ordinary" photo again made the very selective cut, being enlarged and placed centrally on one of the 4 absolutely incredible boards that Ashley artfully, thoughtfully and quite lovingly pieced together.
After the memorial service, one of my very good friends was commenting on Ashley's beautiful work and the unbelievable number of memories we as a family had captured on film. She then asked if she could get a copy of the "angel picture." I asked which one she was speaking of, and she walked me over to the photo boards and pointed to the "ordinary" birthday party photo. At that moment something EXTRAORDINARY happened. For the very first time, I saw a perfectly placed golden halo above Maddie's head and a pair of equally obvious wings on either side of her...
Looking at it now, I have no idea how I missed it- it is that blatant. There is probably a simple technical explanation- dome reflecting light from flash... for what occured in the photo, but as another good friend said to me, its significance, and the fact that it went unnoticed until after her death, is nothing short of miraculous. The photo, along with the quote at the top of the page, is the cover of our Christmas card this year. Any of you reading this that have received our card can testify to the fact that it is no "ordinary" photo.
I put much thought into the making of our holiday card- my personal challenge is to significantly include Maddie every year. After selecting the "angel picture," I searched for the perfect quote to convey what I have always known in my heart- angels are truly all around us. They are "ordinary" people who affect us in "extraordinary" ways.
As the inside text of our card suggests, I am blessed to be mom to 4 angels who touch my life every single day. They often behave like very "ordinary" kids- arguements, demands... but the gifts each one brings to my life are most definitely "extraordinary."
I am abundantly fortunate to be touched by many angels. Several family and friends have been unwaivering with their love and support throughout these past 3 1/2 challenging years- some throughout my entire life. Who could argue that they are my angels? Some dear old friends have resurfaced recently, bringing much appreciated new perspective, coupled with comfortable familiarity, at a very critical time in my life. Angels. Some new people have recently joined the ranks of my greatly cherished friends, offering the freshness that new relationships bring, combined with a sensitivity to my grief that is astonishing. Angels. Some angels have touched my life and left a permanent mark on my heart and have flown on to do their work elsewhere, and I am profoundly grateful... others have yet to introduce themselves.
"All angels come to us disguised."
My holiday wish for all of us- heck, my daily wish- is that we quiet our minds and open our hearts to be available to welcome the many angels God sends into our lives.
With love and appreciation,
Julie and my angels,
Ashley, Maddie, Charlotte and Keegan
Monday, November 6, 2006 3:56 PM CST Today marks 2 and a half years since Maddie's death...
on some levels it feels like an eternity, on others like it was just yesterday. I often feel like I am seeing life through a thick fog.
"Real grief is not healed by time... If time does anything, it deepens our grief. The longer we live, the more fully we become aware of who she was for us, and the more intimately we experience what her love meant for us. Real, deep love is, as you know, very unobtrusive, seemingly easy and obvious, and so present that we take it for granted. Therefore, it is often only in retrospect- or better, in memory- that we fully realize its power and depth. Yes, indeed, love often makes itself visible in pain."
-Henri Nouwen
2 and a half years ago...
Keegan was just 1 1/2- this month, November 27, he turns 4. When Maddie died, he was barely talking. Of course his vocabulary included some very important words, "Baboo" being the one he developed on his own that still sticks today. He is an extremely thoughtful child, driven to learn, with tons of energy and a silly sense of humor- he reminds me of
Maddie. He is very aware as we check on children's websites of the challenges they are facing. Driving to and from preschool 3 times each week he asks many questions as we pass a cemetery. His latest plan is to help me make a "headstone" for the box of Maddie's ashes we keep with us.
Chachi was just eleven, completing her first year of middle school. She is now in the ninth grade, her first year of high school. ChaChi is now experiencing what Maddie was anticipating her last year. She has embraced the high school experience with open arms- just having finished her school soccer season she is at basketball tryouts as I type. She is doing well academically and the social piece has NEVER been a problem. She, too, is a very thoughtful child. She does keep her emotions outwardly in check, but I know they run very deep.
Ashley was just finishing her junior year in high school. Today she is very much a second year college student- juggling multiple responsibilities- academics, living on her own, working, tending to her social and emotional well-being... she has always been an extremely passionate and compassionate human being, and losing her beloved Maddie has only heightened these aspects of her personality. I observe her trying to find a measure of resolution with some of the challenges life has thrown her way- she exhibits a depth of understanding of the need to do so that astonishes me.
Maddie's best friend, Liz, remains very present in our lives, as many of her friends do. Liz was just completing her eighth grade year when Maddie died, she is now a junior in high school. Following her life, I am constantly reminded of the milestones Maddie would be experiencing if she were here- drivers licence, dances, dating, sports, beginning the college search... and I am acutely aware of the huge void Liz feels not having Maddie here to share those milestones with.
We all miss Maddie's physical presence immensely and intensely and we are painfully- and gratefully- aware of the power and depth of the love that we share with her, and with each other.
Thank you for your continued love and support- it has meant more than I could possibly convey since we began this journey, with Maddie, 3 and 1/2 years ago when she was first diagnosed.
With love,
Julie- mom to 4 fantastic children- Ashley, Maddie, Charlotte and Keegan
Wednesday, October 25, 2006 10:41 AM CDT Hello.
After sharing Maddie's incredible letter in my last journal I've been stumped to come up with my next entry.
Today, Maddie has again provided me with the words I should share here.
As I was cleaning out the room that I intend to make Keegan's bedroom, I came across a printed email from Maddie to me, dated Feb. 6, 2004- exactly 3 months before her death. I am quite certain that I have never seen this note before- she must have written it, printed it and stuck it in a folder for me to find at a later date...
The subject line says "hey" and she adds nothing to the beginning or end of the poem.
Angel by Your Side
May you always have an angel by your side,
Watching out for you in all things you do.
Reminding you to keep believing in brighter days.
Finding ways for wishes and dreams
to take you to beautiful places.
Giving you hope that is as certain as the sun.
Giving you the strength of serenity as your guide.
May you always have love and comfort and courage.
And may you always have an angel by your side.
May you always have an angel by your side.
Someone to catch you if you fall.
Encouraging your dreams.
Inspiring your happiness.
Holding your hand and helping you through it all.
In all of our days, our lives are always changing.
Tears come along as well as smiles.
Along the roads you travel,
May the miles be a thousand times more lovely than lonely.
May they give you the kind of gifts that never, ever end:
Someone wonderful to love
and a dear friend in whom you can confide.
May you have rainbows after every storm.
May you have hopes to keep you warm.
And may you always have an angel by your side.
-Emilia Larson
We continue to appreciate the love and support of all of you. We are blessed to have you in our lives.
With love,
Julie- lucky to have my angels, Ashley, Maddie, Charlotte and Keegan, always by my side
Monday, September 18, 2006 8:02 PM CDT Well, the last 3 or 4 days have been excruciatingly difficult "I Miss Maddie Days" for me- lots and lots of tears and no one thing that triggered this funk- reread the start of my last journal entry where I liken my life to riding a rollercoaster blindfolded- I often find myself overwhelmed with sadness, but can't anticipate when or what will cause the grief to be so debilitating- so all I can do is react to it.
I often reread Maddie's words. Tonight I am sharing the second goodbye letter my sweet daughter wrote to me. The first I have posted at the top of this home page. As I explained when I first posted it, Maddie wrote this the very week she was diagnosed, I found it quite by accident, and I did not tell her that I had found it until shortly before she died. I can't tell you how many times throughout Maddie's year long illness I would secretly go back to that letter, drawing my strength from the depth of her strength and love. That letter is such a gigantic gift, and I am so fortunate that Maddie could communicate her love so powerfully. I am in awe of the fact that having been handed such a devastating diagnosis she turned her thoughts to me and had the presence to write such eloquent words, her concern for me so great.
Remarkably, this was not her only amazing letter. About 2 months AFTER Maddie died, Ashley discovered some letters she had hidden in a file on the computer. The last time she edited the file was late March, just over a month before she died. She was well aware how the disease was progressing. Again, her concern turned to me and her siblings, and how we would live after her death. My unbelivable daughter wrote these words to me...
Mom,
I can't even begin to express my love for you... You are the Bang in my kok, the jump in my step, the beat in my heart. I love you more than you could imagine, and I wanted you to know that!
I never want you to stress out over me. I am fine. From heaven, there are some great views and I plan to watch over you from all these clouds. I'll snuggle with you every night, don't forget that, Mom. I'll always be with you and I'll always be in you. Being apart doesn't mean anything to me, because we will never be apart. Don't forget that, we're always together and you will never leave my heart and you will never wander from my thoughts!
You mean the world to me and I only have one more favor to ask. I ask that you not shed another tear on me, that you are strong for the family. I ask that you continue my fight, you keep winning, you help others in their own fights, if you would. You have something so special about you and I think it is crucial in some people's battles. I want you to be there for others as you were here for me. I ask you to develop a closer relationship with ChaChi and Ashley. They need you more than ever and I really need you to be there for them. Keegan and Rich as well, they need to be part of your life, so let them in. I know you can, Mom. I know your strength.
You are the closest and deepest part of me and I wanted to thank you for that. You have given me so much more than food and shelter, you have given me something that can't be explained. A gift so large- the present of never leaving my side. You have given me life, health, unconditional love and praise. You have given me EVERYTHING the happiest princess could get. Thank you, thank you Mom! Do not ever regret a a thing you have done for me. I turned out perfect because of the perfect mom I have.
So let's close this. Do not say that you love me more than I love you. Do not wonder what you could have done instead. Don't ask why. Do not wish for different things. Do not long to be with me, you are. Do not get stressed over me. Do not question the "What-ifs." Do not have any regrets. Do not forget all the times we had, good and bad. Concentrate on the present, not the past or the future. Let go of your little stresses and be there for my sisters and Keegan. I LOVE YOU JULIA CAROL DORNISCH!!! Do not ever forget that!
Sing to me every night, and I to you...
I love you mommy, Oh yes I do,
I don't love anyone like I love you,
I am so near you, Do-do!
Oh mommy, I love you!!!
Love XOXOXO(more than you can imagine),
Maddie, your daughter, your best friend, your angel
I have no words to add, only extreme gratitude to Maddie- and to Ashley, Charlotte and Keegan who display their love for me and for each other- sometimes through words, other times through acts and simple gestures- every day.
My gratitude extends to our family and friends who continue to love and support us- sometimes through your kind words, and sometimes, when words elude you, through kind acts and simple gestures- all reminding us that Maddie's life matters and that the love she exuded connects us all.
With love,
Julie-blessed to be mom to 4 real angels; Ashley, Maddie, Charlotte and Keegan
Sunday, August 27, 2006 8:46 AM CDT Happy Birthday to you
Happy Birthday to you
Happy Birthday, Dear ChaChi
Happy Birthday to YOU!!!
Happy 14th- Wishing you a year filled with love, happiness, adventure, friendship and fun!
I love you,
XOXOXOXOXO...
Mom
Tuesday, August 22, 2006 11:15AM
Life is certainly like a roller coaster ride... ups, downs and everything inbetween- the difference being, if my memory serves me well, when you are truly riding a roller coaster, you can see the track in front of you, allowing you to ready yourself for the next climb up, the next big drop or the next big twist. Real life doesn't give you that perspective. It's more like riding blindfolded, reacting rather than anticipating.
The past few weeks have been filled with many ups, downs and twists. I have been very emotional. Without going into great detail, Keegan had been complaining, off and on over the course of the past 3 or 4 weeks, of some unusual aches and feelings. I tried to shake the maternal feeling that something serious was up, but as it continued to creep into his communication with me, my emotions escalated. The Internet Age also serves as both a blessing and a curse. Armed with a couple of odd symptoms to "Google" you discover a host of yet-to-be-thought-of potential causes, many quite alarming. A trip to the pediatrician and one to Children's Hospital for xrays behind us(and the fact that Keegan has not complained of anything odd in a week), I am now confident that he is fine. A week ago I was a wreck. This is the world I live in. 3 years ago I was a much different mom. I believed, like most parents, that kids are resilient, doctors can fix most anything and there is a natural order to life. My innocence was taken in an instant when we were given Maddie's diagnosis. I continue to challenge myself to live like Maddie: in the moment, finding joy and hope in every situation. Sometimes I am more successful than others.
ChaChi has very exciting news! She, along with 3 of her good friends from her club soccer team, made the high school varsity team as 9th graders! Not to be outdone by her brother, last week's tryouts provided for MANY high and low points, culminating in yesterday's announcement that they are officially VARSITY PLAYERS! Congratulations Chach, Via, Lizzie and Bonnie! Breathing easier, Chach is now looking forward to getting the competitive season underway, to HIGH SCHOOL starting on the 5th, and, even sooner, to this Sunday, August 27th, her 14th birthday! I am so excited for her, and all that she is about to experience with this next phase of her life. She is a really neat kid- plenty of confidence, intelligence, spunk and cuteness, but possesses great compassion and strong values. I am very proud of her, as I am of all my fabulous kids.
Anticipating this next chapter in Charlotte's life is very exciting. It also has brought on some feelings that I wasn't ready for. Chach is about to embark on what Maddie was anticipating the last year of her life. She is now moving past where her big sister was in life, and I can't help but feel a twinge of sadness with this realization. I want Maddie to be with her that 1st day of school- the big "junior" that she should be- to show her little sister around campus. I want to go to the soccer games to see Chach, who plays more defense or in the middle, passing the ball up the field to Maddie, who always played up top, the goal scorer that she was. I will never forget the application process Maddie went through selecting her desired high school. Maddie was a fantastic student- off the charts intelligent, but also a kid with a real passion for learning- just the search for knowledge made her happy. 8th grade was a bit different for her. While seemingly unaffected in most academic areas by her treatment and/or tumor, I remember her math retention was altered. She remained in the highest math class, but, for the first time in her academic life, she struggled. Those tears she shed over her frustration with this change are some of the very few I remember surrounding her year post diagnosis. I clearly remember the day she received her acceptance letter for high school. Pure elation- and relief. Where there was never a question in my mind that she would get into the very academically rigorous program she had selected, there certainly was in hers. Of course I felt great pride for her- as I had for Ashley before and ChaChi since- upon receiving that letter. I also knew that it was unlikely that Maddie would ever get to be a high school student. So many emotions...
Ashley is about to move into a house near campus with 5 other girls, ready to start her 2nd year of college. She is so thrilled. She has been collecting household items- dishes, furniture, accessories... all summer, and can't wait to put the house together. She is heading over to a journalism meeting today, an area of study she is thinking she may pursue. All so exciting and grown up- hard for me to believe she is already at this point in her life, I can still picture her so clearly in my mind as a little girl.
Keegan will also be packing his lunch box and heading off to preschool 3 mornings/week. I have decided, with some reluctance, that he will benefit greatly from some time with kids his own age(sometimes I think he really thinks he is somewhere between 14 and 20, as he hangs with his sisters and their friends). I love having him with me ALL the time, but I need to allow him the same opportunities and experiences his sisters loved so much.
The kids are all growing, learning and most importantly, LIVING. They continue to bring real joy and depth to my life. I miss my Maddie's physical presence soooooooo much, but am comforted by the real knowledge that I carry her with me every second of my life.
Again, too long of a journal to give Maddie's words the proper stage they deserve. I'll update again soon...
As always, thank you for your continued love, support and reminders that my sweet daughter lives on in your hearts, too.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Saturday, July 29, 2006 11:08 PM CDT It's been another stretch between updates, and since I have to stay up until I can switch ChaChi's basketball gear from the washer to the dryer(she just told me she hadn't done it herself, and she needs it for an early morning game), I thought I would use the time to journal.
Summer has been chugging along. Charlotte's summer soccer season just wrapped up last weekend with her team winning their championship game in the USA Cup out in Blaine. The girls played fantastic soccer and it was a fitting end to a great season. This past week she has been practicing basketball with a group of girls she played traveling ball with last fall/winter- they signed up to play this weekend in a outdoor tournament called "Hoop it Up." She loves to play, but with the intensity of her soccer training(basically all year round), she doesn't get to play as much as she would like. The weather here is unbelievably hot- temps hovering right around 100 degrees and incredible humidity- so playing in a outdoor tournament is tough. She seems to be enjoying it though- both playing and hanging out with some girlfriends she hasn't spent much time with lately- and they won one game and lost one today. They have a guaranteed morning game tomorrow, and I believe their success with that will determine whether or not they play on. With all her physical activity, you would think she'd be too exhausted to do anything else. Not my ChaChi, she still manages a healthy dose of movies and hanging out with friends. She begins captain's practice for her high school(Oh my, did I just say HIGH SCHOOL?) soccer team already on the 7th of August, so there is no real "down time" for her. Oh, to have that youthful energy...
Ashley has been working a fair amount for a friend of mine with two teenage children- driving, some tutoring and light housekeeping and errands. I have another friend who I have been helping quite a bit with a house move, moving sale, etc. these past 3 weeks, and Ash has pitched in to help me whenever she can with that, too. She, along with Chach and my two sisters, has also been a big help keeping Keegan occupied while I've been gone organizing things for my friend, which has allowed me to really focus on the task at hand. Ashley, like Charlotte, has also managed quite a bit of fun time, too- the beach, parties with friends... so I think it's safe to say she has enjoyed summer break so far as well.
Keegan remains the sweetest little boy I have ever known. He constantly has a kiss, a hug or a loving comment for me just when I need it most. He never likes to see anything go wrong for any one of us, and looks to encourage us whenever he sees frustration or sadness creeping in. This past week my sister, Paula, and her 3 kids came from Omaha for a visit. All the kids and I walked down to the playground to play a pickup game of basketball one evening- boys against girls, except Keegan, of course, who wanted to play with his mom and sisters. Well, I took a shot that was a complete airball, and my sweet boy, without a second of hesitation told me, in the kindest voice imaginable, "That's all right mommy, you just need to practice a little more." Yesterday, Ashley was looking for her misplaced cell phone and was getting a bit agitated. He told her, "Ashley, you just need to stop, think and take a deep breath." These are just 2 small examples of the joy and comfort our little guy brings to our lives constantly. The other day I heard him tell his dad, completely out of the blue, that he misses Baboo(Maddie). He went on to say that he just doesn't know where she is...
Missing Maddie is a constant for all of us. The enormity of the void her physical absence has created cannot be put into words. Last weekend I attended a fundraiser for brain tumor awareness and research. It was an amazingly well organized event and was incredibly financially successful, and I truly admire the young woman who founded the event 3 years ago as the result of her own brain tumor diagnosis. She continues to work tirelessly on behalf of this cause. I went alone and it was far more difficult than I imagined. Maddie's photo was included with others in a section entitled "In loving memory." There was also a section of "Survivors" photos. I am honored to have Maddie's story told. She is the bravest, strongest, most selfless person I will ever know and her story provides a great deal of strength and inspiration for many. And although I faintly remember the time that Maddie's picture would have hung in the "Survivors" category- that stretch between April 28, 2003 and May 6, 2004- and even though I truly appreciate the bravery of each and every one of those "Survivors" photos and truly have a great understanding of their struggles and I am rooting hard for each of them- standing there last Friday evening, looking at the 2 distinct categories, "In loving memory"/"Survivors" I recognized how very close, yet how extremely far apart they are and how much I long to be back, with Maddie standing right next to me, in that time when her picture would have hung in the "Survivors" category.
Originally when I started this journal entry tonight, I was planning on sharing another one of Maddie's beautiful writings that I have yet to post here. I have been popping on and off the computer to finish laundry, etc. and it is now almost 12:30. Chach and I have to head downtown for her game tomorrow at 8:00 am, so I'd better save that as my next entry and get to bed. Having said that, I promise to write again much sooner than has been the case over the past few months.
As always, we truly appreciate your continued thoughtfulness and support. Your messages remain a helpful reminder that Maddie's spirit lives on in your lives, which does bring real comfort.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, June 20, 2006 10:02 AM CDT I know the stretches between journal entries have gotten longer- it is a challenge to know exactly what to share here.
I think the most frequently asked question is "How are you doing?"
The kids and I are fine. We are living our lives. Ashley had a very successful first year college experience. Charlotte just completed middle school last week and is now officially in HIGH SCHOOL and Keegan is an energetic, humorous and very sweet 3 and a half year old little boy.
Our grief has begun to become less externally obvious. We live with it every second of every day and it deepens with each breath, but to most on the outside, it may be hard to detect. Grief has taken up permanent residence in our hearts, but it has not completely taken over our hearts. We share a love with Maddie, and with each other, that is bigger than anything else. We live much like anyone else- soccer games, trips to the park, grocery shopping, house work, parties, homework... we just have to take our uninvited resident along everywhere we go. We do not hide our grief, we LIVE with it. We miss Maddie's physical presence- her fantastic humor, her silliness, her gentle spirit, her intelligence, her demonstrative love... but she is us and we are her- we are so entwined- she, too, holds permanent residence, and we've given her and our love for each other the biggest house in the neighborhood.
One week ago we attended Charlotte's 8th grade "Completion Ceremony" from Anthony Middle School- the same school both Ashley and Maddie attended. The school has created the "Madeline Paguyo Award" which it will continue to give out every year to recognize students who exemplify the same qualities- courage, perseverence, love, kindness, good citizenship, commitment to academic excellence and love of life- that Maddie demonstrated. This year ChaChi was honored with this very special award. (Trust me when I say it was not a sympathy vote, I can think of no one more deserving of the recognition.) The award reads:
"In the sixth grade, and at the very tender age of eleven, Charlotte suffered the monumental loss of her sister. For the past two years, Charlotte has courageously faced her grief and sought a balance between finding herself and remembering her beloved sister. Through all of this, Charlotte has moved forward excelling academically(earning straight A's), standing out as an athlete(soccer and basketball) and being a great friend to many at Anthony."
I am so proud of ChaChi, Ashley and Keegan. Each of them have suffered the monumental loss of Maddie, each at their own unique stage in life. Not only did they lose Maddie, which is the obvious loss, the impact that has had on EVERYTHING- family dynamics, faith, holiday traditions, beliefs, choices, friendships... literally EVERYTHING- has challenged each of them daily to make adjustments to a new "normal" that none of them chose or could have ever imagined to be so challenging and redefining. The kids are managing to adapt to their lives in a way that both honors Maddie and acknowledges their losses, while pursuing their own continued development. Individually and collectively they are fantastic children and people and I am so very blessed to be their mom.
Thank you for continuing to check in on us. Your love and support continues to be very important to each of us.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
***Keegan is officially potty trained!!! Watch for an invitation to his "Potty Party" very soon!!!***
Friday, May 5, 2006 1:13 PM CDT "A butterfly lights beside us,
like a sunbeam... and for a
brief moment its glory and
beauty belong to this world...
but then it flies on again, and
although we wish it could
have stayed, we are so
thankful to have seen it at all."
-Author unknown
I've been trying to compose another journal entry for some time. Last Friday, April 28, marked the 3rd anniversary of Maddie's diagnosis. The day my motherly innocence-"I can kiss it and make it all better"- was turned upside down and inside out, morphing, over time, into an understanding that while a mother's kiss may not be able to control the outcome, if I used the boundless love I have for my children as my compass, much happiness and beauty could be discovered along the way, and precious memories, memories that we will hold onto forever, were created. Tomorrow, May 6, marks the 2nd anniversary of Maddie's death.
Rather than try to inadequately convey all that my heart holds so dearly and feels so deeply, I think I will tell our butterfly stories. I have often written that butterflies have become a powerful symbol of Maddie's spirit for our family. Many of you have heard these stories, some have heard bits and pieces. Woven together they create a message of love, comfort, peace and unbreakable bonds. We know our connection to Maddie is permanent and that we will see her again.
I'll start with the beginning of July, 2004. I had gone to the grocery store to pick up a few things so that Ashley, Keegan and I could have a picnic. Ashley was sitting on our front stairs reading, while Keegan(just 1 1/2 at the time) was playing near her in the front yard. She noticed Keegan had become very quiet, so she glanced up from her book to see what he was doing. To her amazement, he was crouched over his paper plate turned frisbee, looking down at an enormous, beautiful butterfly. When he caught Ashley's eye, he motioned excitedly for her to come closer, saying "Baboo, Baboo" repeatedly as he pointed to the butterfly. Ashley asked if the butterfly was really Maddie, and while shaking his head yes, he said, "Dachi!, Mom!" indicating he wanted her to run and get us so that we, too, could enjoy Maddie's visit. Ashley began to cry as she explained that neither Chach or I were home- and, after some time, the butterfly flew away, Keegan blowing kisses and saying Baboo's name as it went. When I pulled up with the groceries, both Ashley and Keegan were standing in the yard sobbing.
Two days later, the kids and I decided we'd head down to the Farmer's Market to kick around. Ash and Chachi were waiting in the car, while I raced around with Keegan on one hip, grabbing diapers, wipes, juice, keys, $... for our excursion. As Keegan and I approached the car, he spotted a butterfly on the boulevard and without hesitation said, "Ahh, Baboo." I froze. Then I called to Ash and Chach to get out of the car, as apparently Maddie had made another visit.(Ashley told me later that since the first butterfly experience she had shared with Keegan, she had been pleading with Maddie to please come back, if it really was her.) The 4 of us stood huddled together as the butterfly moved between us. First it landed on me, its proboscis(the kids told me the correct name for it)"licking" my hand. Gently, it moved up my arm, stopping to perch on my shoulder, then flit to my ear and on to my cheek. It repeated a similar dance on both Ashley and ChaChi, flying near, but not landing on, Keegan, as if it knew that would scare him.This went on for at least 45 minutes.I ran to get a camera to take a picture of ChaChi holding it in her palm, wings outstretched. An image of Maddie flashed brilliantly in my mind. I had taken this exact photo in September of 2003. Only instead of Charlotte, it was Maddie holding a beautiful monarch in the palm of her hand, and she was telling me that she was positive the butterfly was a little girl named Julia. OK, let me back up here.
Maddie and I had flown out to Pennsylvania in Sept., 2003, to attend a picnic with other cancer survivors who had chosen the same alternative therapy we had. We were combining it with a visit with my parents. During our planning Maddie was excited to meet a couple of children who shared her diagnosis who would be at the event. Sadly, shortly before we were to go, Julia, one of the girls Maddie was to meet, passed away. Maddie and I had some time alone on our trip, and we decided to explore my parent's neighborhood. We stumbled upon a monarch, and Maddie picked it up. It seemed completely content to sit endlessly in the palm of Maddie's hand, and I snapped many beautiful photos of it. Maddie, with the same certainty that Keegan expressed, said, "Oh, it's Julia." Amazingly, almost one year later, I was reliving this remarkable moment Maddie and I shared with Ashley, Charlotte and Keegan.
We called my mom and dad and shared our story.
Two days later, Tuesday, July 6, 2004, on the 2 month anniversary of Maddie's death, clear across the country, my parents received a very similar, very intimate visit from Maddie in the form of a butterfly.
There have been many other, less dramatic, additions to this story since these first, very powerful experiences. Cleaning off my shelves one day a year or more ago I came across a big flat rock, obviously painted by a child. The image is that of a butterfly, flying toward the sun. When I turned the rock over it reads, "Maddie, 1998." I don't remember ever looking at it before. Last summer while preparing for a garage sale, I was up sorting through the attic. I reached into a dark green bag to see what era the clothes that I "just had to save" were from. The first thing I pulled out was a handpainted t-shirt, signed by Maddie, with a big blue butterfly and 3 stars on it. From the size of it, she was probably 6 when she made it. Today, as I was searching for a very specific photo, I came across another of her when she was 5(I'm sure of the age because she's sporting a bright pink cast) and she's dressed in her Halloween costume- A white and pink butterfly...
As I have said on countless occasions, I am so blessed to be the mom of all 4 of my children. Each are wonderful children, and are such compassionate people. Ashley is so deeply passionate, Maddie so graceful and generous, Charlotte so confident and kind... and Keegan with his pure heart and unencumbered mind, able to lead us right to Maddie.
"What the caterpillar calls the end of the world, the master calls a butterfly."
-Richard Bach
Thank you for your continued love and support.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Thursday, April 13, 2006 8:08 AM CDT *** Shortly after updating this morning, I was contacted by my friend, Nadine(caringbridge.org/ny/troy) with some difficult news regarding our friend, Andrea.(caringbridge.org/ky/ryanbrown). Andrea, who lost her sweet boy, Ryan, to the same diagnosis as Maddie, just delivered her 3rd child, Lucas, this past Saturday ("big" sister Elizabeth is just a babe, too), was airlifted last night to Vanderbilt Hospital, where she has been diagnosed with heart problems-fluid surrounding her heart. Her husband, Phillip, is currently in Iraq. Please keep their entire family in your prayers.
While I'm asking for prayers, Nadine's baby boy, Hunter, was born prematurely, and has yet to make it home. If everything continues to go well, Monday is homecoming day for him. Please keep their dear family in your prayers, as well.
Hello. We returned from our visit with Susan, Mark, Colton Jake and LaLa Kitty late Sunday night(technically, it was already early Monday morning). Our vacation was absolutely fantastic- the weather was BEAUTIFUL; Colton is a handsome, HEALTHY 4 month old; ChaChi, Liz and Kristina were perfect travelers, guests and helpers; Keegan was a dream, enjoying every single moment; it was wonderful to see and talk with Mark; and for me, the highlight(or at least one of many) was spending so much time with Susan- she is an unbelievable friend and a incredibly gracious hostess. It was one of those rare vacations that I actually got to RELAX- coming back home with my batteries recharged. The only drawback to the trip was that my oldest daughter, Ashley, wasn't there, as her spring break was 2 weeks earlier than our trip- and, of course, we were missing Jake and Maddie's physical presence every single second. Susan and Mark, "Thank you" seems inadequate. We appreciate you, and your extreme generosity, so very much! We're already anticipating our "Third Annual" with great excitement!
Today Cameron's family is coming to visit and we are really excited!(caringbridge.org/ct/cameron) Cameron and Maddie shared the same diagnosis, and the very first time I visited his site, Cameron, with his million watt smile and the positivity he radiated, climbed right into my heart. It has only been 2 months since Cam made his heavenly flight. As his mom, Carla, and I were speaking yesterday, I was transcended back in time, remembering vividly some extraordinary things we experienced at the 2 month mark- as well as the raw pain. It truly is amazing the way our memory works- you never know what the triggor will be- the beginning of a song, a whiff of a familiar smell, a photo, a taste... and instantaneously you find yourself back to an exact moment with the full emotion that the original experience evoked. Thank God for our memory. It allows the comfort and familiarity of our past to walk hand in hand with our present and future. Maddie is with me every single second.
Alright, I'm going to cut this short for now. Guests are coming, and there are a few preparations to be made. Whatever the holiday it is that you and your family are celebrating- Passover, Easter...- I hope it is joyous. (Keegan has been practicing hiding and finding Easter eggs for quite some time, he is so excited!)
As always, your love and support is so appreciated.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Monday, March 27, 2006 12:40 AM CST I know, I know... it's been a loooong time since my last update. As any parent on this side of the illness will tell you, frequent updating is far more difficult now than it was when our children were still alive.
A lot has been going on in our lives...
Ashley and her friend, Justine, traveled to Puebla, Mexico to visit some very good family friends for their spring break. From the looks of her beautiful tan and her humorously retold stories, they had a fantastic time! I am so glad they both had an opportunity to relax and refuel- I know Ash is in the midst of a very challenging second semester, and the vacation was both needed and deserved- she works very hard on her academics. She has also been doing some modeling this past year. Saturday she spent the day with a photographer and our good friend, Jamie, a make-up artist, shooting tons of photos to update her portfolio. I got to view several of the pictures, and I am always amazed by Ashley's beauty. I think all 4 of my children are exceptionally beautiful, and because I know that their beauty radiates from the inside out, I could not be prouder.
On the 17th of March, Keegan had dental surgery. He had a fair amount of work that needed to be done, and being so little and with some dentist/doctor anxiety, we decided the only way to do the work effectively and efficiently was in same-day surgery. I was a bundle of nerves... he sailed right through, with no recollection of the procedure. All he remembers is playing with great toys at "Children's West," and he frequently asks when he can go back to play.
I have been feeling extremely sluggish, with a bunch of other symptoms that led me to finally go in 2 weeks ago to have bloodwork done to check my thyroid function. Just as I expected, the results show hypothyroid (we have a family history), and I am thrilled to have both a diagnosis, and to have started on some medication that is already helping with several of the symptoms. I leave this Thursday with Charlotte, Keegan, Liz and Kristina for our spring break in Florida, and I am so happy to be regaining some of my energy before heading to the land of sunshine. (trust me, whether they know it or not, the kids are thrilled at this upbeat turn, too!)
ChaChi has been counting down the days until our vacation. We made our obligatoy Target run last night, and it's truly amazing how much "stuff" we "need" for our trip... We don't travel very often, so when we do everyone's excitement is hard to contain. I can't wait to see Susan, Mark, Colton Jake and LaLa Kitty (www.caringbridge.org/page/jakegriffin)- truth be told, I've been counting down the days, too- ever since we left them last year! Jan, Harris' mom (www.caringbridge.org/florida/harris), is planning on spending some time with us, too. I met both of these families through Maddie's illness, and now I count them among my closest friends in the whole world. It really is unbelievable the number of blessings that have come from this very challenging journey.
Another exciting piece of news... as some of you know, last year Southwest High School raised some money, in Maddie's memory, to be donated to Children's Hospital. (Ashley graduated from SW last year, Maddie would be in her sophomore year there, and Chach is headed there this fall)
I have met on a couple of occasions with a woman from Children's foundation to figure out how to best appropriate the funds. This past Wednesday we had a meeting with a wonderful physician who has been hired by the hospital to expand their pain management, palliative care, hospice and integrative health programs. They all will fall under one umbrella now, and every word that this gentleman spoke in regard to this expansion was so exciting and made such perfect sense to me. Not only do I whole heartedly support the $ raised in Maddie's name to be directed here, I have decided to volunteer my time and energy to raise additional $ to see his plan realized as quickly as possible. I am so happy to know that Maddie would be thrilled with my work on this.
Wow- the news just keeps on coming... I am also anxiously awaiting a visit from Cameron's family.(www.caringbridge.org/ct/cameron) Thursday, April 13th, Cameron's mom, Carla, sister, Charli and Aunt Toni will be coming to Minneapolis. They will be here for 5 days, staying at a hotel quite close to our home. We have plans to spend as much time as we can getting to know each other even better than our email/phone/website communication has allowed for. I have enjoyed every minute I have spent talking with Carla, and ChaChi is quite excited to finally meet Charli- they are the same age, and appear to have several things in common. Chach is already envisioning trips to the mall, movies, a party introducing Charli to her friends... lots to pack in to 5 days!
Whew!... I'm tired!!! Check back again- we'll update, with our fresh suntans, when we get back from our "just can't wait to get there" vacation.
Thanks for checking in, and for your continued love and support.
With love,
Julie- Ashley, Maddie, Charlotte and Keegan's mom
Friday, February 10, 2006 2:45 PM CST February 14,2006
To my Valentines:
I love you Ashley, Maddie, Charlotte and Keegan,
Oh yes I do,
I don't love anyone like I love you.
When you're not near me, I'm blue(boo-hoo).
Oh Ashley, Maddie, Charlotte and Keegan-
I Love You!!!(oh yes I do!!!!)
I love the 4 of you to the moon and back!
Happy Valentines Day.
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
-Mom
Wow... over one month since I last journaled... It's not that I haven't thought about sitting down to write several times, simply that I prefer to use Maddie's page as a upbeat, inspirational vehicle, and I haven't felt that way much as of late.
Where to begin?
The last time I journaled we were about to celebrate Maddie's and Liz's 16th birthdays. The party went quite well, and we collected a huge amount of toys to donate in Maddie's memory to very deserving children. Maddie is certainly quite happy with our efforts, I am sure. I am humbled by the extraordinary love Maddie's friends continue to demonstrate both for her, and for our family... she was a keen judge of character, and created an amazing circle.
On the family front, there have been plenty of ups and downs.
Ashley continues to push herself academically. She is quite serious about her studies, and focuses plenty of time and attention on them. As I last wrote, her first semester went quite well, and I received written confirmation of this recently via a letter stating she had made the dean's list. She also has found a real passion for dance, and took several classes over winter break. She has added a for credit african movement class to this semester's schedule, and she loves it. She plans to visit very good friends of ours in Mexico for her spring break.
Charlotte's schedule is hectic, just as she likes it. Her school basketball season finishes next week. Her traveling basketball season goes into March, and, as she has every year since she was 10, she continues to train year-round for soccer. She is a talented athlete, but somehow manages to be equally talented academically and socially... I've always been a bit jealous of her "do it all well" ability. It's hard to believe she'll be in high school in the fall- she's certainly ready, just not sure I am...
Keegan is my sweet boy. Don't let the word "sweet" fool you too much, he definitely is all boy, and all 3- pushing the envelope frequently to see how much control he really has over how things go in his life... and yet, I could not ask for a better buddy. He is thoughtful and compassionate far beyond his age, funny and bright, too. He and I have traded back and forth a few bugs and viruses over the last month or two, but- knock on wood- we both seem healthy right now.
I am sad. That's not to say I don't experience happy moments, I certainly do. I am thrilled to participate fully in Ashley's, Charlotte's and Keegan's lives. Motherhood is a privilege unequaled by any other. I simply miss Maddie every single moment. The true peace I have is KNOWING she is well- I was lucky enough to see that through her eyes before she left this earth. I am certain we will all be reunited. It's just that this May we will hit the 2 year mark since her physical presence graced this earth, and it feels like an eternity since I touched, smelled and kissed her beautiful body. If two years feels like an eternity, I can't imagine what the next 30, 40, 50... will feel like.
These last few weeks 3 more children sharing Maddie's diagnosis who I have come to know have died- Sydney, Cameron and Sam. Sydney's site is pass coded, so I won't share that- but please keep her family in your kind thoughts and prayers. Cameron's site is caringbridge.org/ct/cameron and Sam's is caringbridge.org/visit/samwalsdorf. Your words really do help- please stop by.
Yesterday marked the one year anniversary of my friend, Denny's, death. Charlotte and 2 other friends had an overnight with her darling daughters, Amanda and Allison on Wednesday, and I, along with some other friends, met up with them at her gravesite yesterday. It was a simple, lovely gathering on a beautiful, snowy day. I am honored to continue to be part of the girls' lives. I hope that I can do my part to keep Denny's spirit quite alive for them. Denny's site is caringbridge.org/mn/dennys.
Charlotte, Keegan and I will be heading back to Florida to visit Susan, Mark and Colton Jake again this year for spring break. Liz and another good friend, Kristina, will be joining us. We are all looking forward excitedly to warm weather, and, more importantly, time spent with dear friends. I can't wait to finally get to smooch that sweet little boy...
Thanks for checking in. Your continued love and support is so appreciated.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Wednesday, January 4, 2006 12:39 AM CST ****PARTY UPDATE****
Open House to celebrate Maddie's
and Liz's 16th birthdays
When: this Sunday, January 15th, beginning at 5pm
Where: Maddie's house, 4441 Colfax Ave. S., Mpls., MN. 55419 612-823-7933
The details: We are having a toy drive, in Maddie's honor, so bring a toy for any age child, boy or girl, that will be donated in Maddie's name to very appreciative children.
For ideas for a gift for Liz, email me at: juliedornisch@yahoo.com
We truly hope you can make it- we all know how much Maddie loves to throw a great party!!!
**************************************
"The life given us by nature is short, but the memory of a life well spent is eternal."
-Cicero
As we turned the calendar last year to bring in 2005, I wrote of a "cautious optimism," anticipating a year of possibilities. Many of these have been realized- Ashley has begun college- she actually has her first semester quite successfully behind her; Charlotte is enjoying being "top dog" as an eighth grader; and Keegan is growing up- he turned 3 November 27th- his loving and funny personality communicated clearly through his ever expanding vocabulary. My resolution to create Maddie's foundation has yet to really take flight. My desire has not waivered, the vision is just not completely developed. I have remained close to many families who have also lost children to this tumor, and I continue to support families who are currently battling it, hopeful for their miracles. I know there is a purpose for me to discover that will be of real help to others, that will also honor Maddie's gigantic spirit.
Now, as we begin 2006, the optimism I wrote of last year still exists. Ashley will continue the pursuit of discovering her academic interests, while also embracing the freedom and opportunity college life provides for personal discovery and development. ChaChi, my very social, athletic and academic eighth grader, has completed the high school application process, and is anxiously anticipating her leap to that next phase. Keegan, my boy who NEVER stops talking or moving(unless asleep or watching a favorite dvd-lol), continues to entertain and comfort us through a combination of gentle kisses, loving thoughts about "Baboo" and silly actions. I am thrilled to witness his continued development- no doubt his unbreakable bond with Maddie will have great influence on him. I am acutely aware of the gifts each of my children bring to my life. Missing Maddie's physical presence is excruciating, but my awareness of our connectedness has only been stregthened since she took heavenly flight. I don't have to imagine what she would think, say or do in any given situation- I KNOW it in my heart. What an amazing gift- connection without boundaries. My resolution is to continue to share the lessons Maddie taught so lovingly, purely and generously- through whatever methods I can. I know, with great certainty, that Maddie remains close to each of us. She is holding our hands, providing the courage we need to continue on this journey until we are all permanently reunited.
Switching gears, we have a VERY important date coming up. January 16th marks Maddie's 16th birthday. A huge milestone in any child's life, but one that holds obvious added significance for our family. Growing up, Maddie liked to joke about the kind of car I would present her with when she turned 16- pointing out that it being her "Golden Birthday"(16 on the 16th), I was SURE to get her a REALLY nice car! Now, as we look to celebrate this very special day without Maddie's physical presence, we can't help but feel the pain of this enormous void. Maddie's best friend, Liz, will be turning 16 on the 18th of January. Since becoming friends in kindergarten, they have celebrated their birthdays together. Liz wanted to continue that tradition last year- our first without Maddie- and has decided that the tradition will continue this year, too. Unless you know us very well, it would be hard for you to firmly grasp the extraordinary bond Liz and Maddie share, and the HUGE place Liz holds in our family- she truly is like a daughter/sister. We are still firming up our plans(plan for an Open House some time on Sunday, January 15), but we do know that the tradition we started last year to honor Maddie will continue- we are asking that presents be given for any age child- boy or girl- that we will donate in Maddie's name to an organization that will give the gifts to children who will truly appreciate them. Last year we took 2 carloads of toys to the hem/onc clinic at Children's hospital. This year, we are kicking around a few different organizations to donate to- Liz, Ashley, ChaChi and I have discussed how Maddie would want to reach out to as many children as possible. As far as gift suggestions for Liz goes, you can email me, as her mom has shared some thoughts on that(juliedornisch@yahoo.com).Our goal is to celebrate GIGANTICALLY both Maddie's and Liz's special days, to honor our love for each of them, their incredible love for each other, and Maddie's eternal memory, as her's definitely was a life well spent.
I'll update the specifics as soon as we have them set.
As Maddie wrote in her journal update dated January 4, 2004:
"Happy New Year! Count your blessings everyday and remember what's really important in life,
Maddie"
As always, thank you for your continued love and support.
With love,
Julie-Ashley, Maddie, ChaChi and Keegan's mom
*Two caringbridge sites that I find very insightful and inspirational are: caringbridge.org/il/rory
caringbridge.org/canada/cameryn
I invite you to stop by for a visit.
Thursday, December 8, 2005 9:53 AM CST FRIDAY, DECEMBER 9, PLEASE GO CHECK OUT www.caringbridge.org/page/jakegriffin, FOR SOME WONDERFUL NEWS!!!!
Good December morning to you all!
It's a chilly day, and anyone who knows me knows how much I love the frigid winter temperatures... at least the sun is shining, so from inside our toasty house, with a cup of hot cocoa to warm my insides, I can pretend it's not so bad...
I've had quite an emotional go of it. Without spending too much time on the "why" of it, it's just a combination of many things- the holidays are an obvious trigger, missing Maddie is a constant, and, I've come to realize, there are many other losses I am also trying to come to terms with. This thing we call life sure is interesting. Growing up, you have such concrete ideas about the way things are "supposed" to evolve, and then real life gets in the way of those plans. That may be the single biggest loss I grapple with- the loss of my innocent dreams.
On the homefront, the kids are doing well. Ashley is working very diligently on her college course work. She is also working some to gain some spending $, and seems to be establishing new friendships, while maintaining old, at school. She is such a supportive daughter, and I love the fact that she enjoys talking to me, sharing her developing ideas on life.
ChaChi has just spent the last 3 days "shadowing" freshman friends at the area highschools she may attend. OK, the truth is she is pretty well set on one in particular, but she wanted to bust out of school to check out the other 2 for fun. I actually encourage these experiences- if I've learned nothing else, I am well aware of the "no guarantees" rule, and sometimes you just have to allow for fun to help balance you emotionally. Chach does a good job of this, probably doesn't need my encouragement...
Keegan had a fantastic birthday. He is such a joy- perpetual motion, interesting conversations, loving and protective of us all, funny... all around a blessing. I know he was definitely part of a bigger plan- the contentment he exudes and the pure love he gives is so helpful for us all.
I have a birthday coming up. The reason I mention it is that the wonderful image of the last one I celebrated keeps replaying like an old movie reel in my head. It was 2003. My 40th birthday. Rich, Keegan's father, had planned a larger celebration, combining my 40th and his annual holiday party. I have never been one for big parties for myself, always celebrating with just my immediate family, and I explained that this year that was particularly important. With Maddie's prognosis, this very well may have(and was) my last birthday with all 4 children physically with me. So, we canceled the larger party and celebrated, Rich, my kids, my dad and one sister, and the Reynolds-Goetz family. We ordered chinese, had a wonderful fire, laughed, chatted, and at one point, we all bundled up, just as Maddie had requested, and went caroling through Rich's neighborhood. I can feel Maddie's arm interlocked with mine, and I can see her radiant smile. We had so much fun- it truly was my best birthday ever.
I hope you are all anticipating the upcoming holidays with a true sense of peace and joy. I have been thinking of, and talking about, Maddie incessantly- she taught such amazing lessons of love and strength and generosity- and did so in such a unassuming manner- and it is from her gifts, as well as those of Ashley, Chach and Keegan, that I draw my peace and joy.
I will journal again before Christmas. Until then, thank you for your continued love and support.
With love,
Julie-Asley, Maddie, Charlotte and Keegan's mom
Thursday, November 24, 2005 7:45 AM CST Added Sunday, November 27:
Happy Birthday to you,
Happy Birthday to you,
Happy Birthday dear Keegan,
Happy Birthday to you!!!
Keegan is 3 today! We will be celebrating with family and friends- of course his friends include Ashley, Maddie and ChaChi's friends, so it will be a full house!
From Maddie's 2003 Thanksgiving journal entry...
"As Thanksgiving rolls around again, I ask you to give thanks for everything in your life. Thank God each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment your child asks for help with. For every basketball game you get to watch your son or daughter playing in. For each call you get from your spouse every day. For all the loved ones you hold close in your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything. Cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have shown me how to be thankful, and what to be thankful for. So this Thanksgiving thank God for everything that matters to you! Even the smallest things. And encourage others to do the same....
Thanks--and I mean THANKS,
Maddie"
Wishing you all a very happy Thanksgiving.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Sunday, November 6, 2005 1:54 PM CST Today marks 1 1/2 years since Maddie left us physically and took her heavenly flight. We miss her more with each passing day, and recognize, through the immense void we feel, the enormity of the gifts she shared and those gifts she continues to bless us with. Plain and simple, we miss you, Maddie, sooooooo much... and there is really nothing plain or simple about that...
Rather than a family update today, I will simply share a couple of quotes that strike a chord with me as I continue to press forward, trying to find my way.
"And if I go while you're still here...
Know that I live on
Vibrating to a different measure
Behind a veil you cannot see through.
You will not see me,
so you must have faith.
I will wait for a time when we can
soar together again
both aware of each other.
Until then, live life to its fullest!
When you need me, just whisper
my name in your heart...
I will be there."
-Colleen Cora Hitchcock
And the quote, more than any other, that I connect the blessing Maddie's earthly life is to me- Maddie herself used this quote to soothe the pain of another grieving mother upon the passing of her precious daughter:
"A butterfly lights beside us, like a sunbeam...
and for a brief moment its glory
and beauty belong to this world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all."
-Author unknown
Maddie, we are missing your physical glory and beauty, but continue to be enriched by the everlasting spiritual glory and beauty you provide.
Loving you and your sisters and brother more with each passing day...
Thank you to all who continue to support and love us, I cannot possibly tell you how much that means.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
PS- Check in on my friends Nadine, John and Hayley. Their son/brother, Troy, went to heaven just over a year ago, on Nov. 2. Nadine's journal expresses so well how many of us missing our loved ones feel. I think her journal is well worth reading, and I know they as a family will appreciate your supportive thoughts.
caringbridge.org/ny/troy
Tuesday, October 18, 2005 1:37 PM CDT UPDATE MONDAY, OCTOBER 24
I just returned home after spending wonderful time with 2 very special friends of ours, Amanda and Allison Seaburg. Today is their mom's birthday. This is the first one the girls have had to celebrate since Denny went on to heaven. Please stop by her Caringbridge site and let her girls know you are thinking of them.
www.caringbridge.org/mn/dennys
THANKS.
UPDATE ON BONNIE
At the bottom of this journal entry I ask you to keep my friend, Bonnie in your prayers. She was recently diagnosed with breast cancer, and underwent surgery, having a double masectomy on Tuesday. The pathology report has come back, and she has received the best possible news! The 3 tumors were all encapsulated, no cancer has spread to the lymph nodes, and she will NOT have to have chemo/radiation. She will be monitored by her oncologist, with some much milder ongoing meds a possibility.
GREAT NEWS!!! Bonnie has regular mammograms, and it is for this reason that things were detected early.
YEAH BONNIE- I love you!
Thanks to all of you who keep checking in, encouraging an update. It really is wonderful to feel the support of so many.
"To change one's life: start immediately,
do it flamboyantly.
No exceptions."
-William James
There has been a lot going on in all of our lives lately.
ChaChi has been dividing her time between school, soccer and socializing. She has been doing phenomenally keeping up with her schoolwork and receiving top-notch grades. Her fall soccer season is coming to a close this weekend with a tournament up north- and it has been a fantastic experience! Her team did well, and as a player, her skills and confidence in herself have again grown immeasurably. In addition to her commitment to train year-round with her club team, she has begun training through the O.D.P.(olympic development training) program, in the hopes of gaining some regional experience. For some diversion from just soccer, she will also be playing traveling basketball- with my sister, Tricia, having agreed to be her team's coach.(for those of you who don't know- this is a BIG deal, as Tricia has successfully coached at the college level for many years- not to mention that it will considerably decrease MY driving obligations!-lol) Somehow, she does it all, without allowing her to miss many- if any- social happenings. Her English teacher put it to me well when we met for parent-teacher conferences- to paraphrase: "She turns in all her work, on-time, interesting, thoughtful, neat and very well organized... there are other students who do this, too, but usually it is at the cost of a vibrant social life. Somehow Charlotte manages both exceptionally well."
As her mom, I can't tell you how happy- and relieved- I am to see the passion in that girl. Of course, she is sad missing Maddie. But my vibrant Charlotte is alive and well, and I couldn't be happier or prouder with the person she is.
Ashley, too, continues to amaze me. She and I have a wondefully open relationship, and are able to communicate so well. I just got off the phone with her, and she was able to relay how a moment in time took her through a whole range of emotions- something that happens to me with great frequency. A question posed by her math insructor reminded her fondly of a story she and Maddie shared- even causing her to laugh out loud. That thought then snowballed into how much she misses her- then the thought of Maddie's next birthday, Jan. 16, being both her 16th and her "golden" took that laughter full circle to feeling profoundly sad. This is how it is for all of us. We have many happy memories of our Amazing Maddie, but our happiness always has an underlying sadness to it, too. Plain and simple, we miss her soooooo much. As I often say, our sadness is a exact reflection of our love- and we love deeply and completely.
Ashley has taken to college life like a fish to water. She is doing so well with her class work and she has a very active social life, too. She has added a regular amount of exercise through some dance classes she is taking. She seems to be taking a very active role in keeping herself in a good place physically and emotionally. Ashley's personality is more like mine than ChaChi's, so it really takes working consciously on that.
That brings me to myself and Keegan. Some big changes are in store for us.(refer to quote at the top of this page)
I have decided to take a full-time(32 hours/week) management position with a bigger retailer here in Minneapolis. The company is just shy of a year old, so it is still very much in its growing stages. The opportunities it will allow for me professionally are many and varied- exactly what my creatively racing mind needs. My new employers understand my need for flexibilty with my kids- I have been very clear that they are, always have, and always will be my first priority. Keegan will not be coming with me- but it has been a great struggle to get him to come to my current job, as I posted in my last update. My neighbor, Elena, will be my go-to gal for help with this. She has a boy, Soren, who is just a tad older than Keegan, and a little guy, Nicco. We are very good friends, Keegan loves the boys, and our parenting styles are similar. She needs some income, I need a place I will feel good about taking Keegan, and I am so happy we can marry the two. Keegan spent his first unscheduled day there yesterday- he flatly refused to go to work with me- and it went off brilliantly.
I am also commited to adding regular, and rigorous, exercise back into my life. Before sitting down to write this update, I went for my first-in-a-very-long-time run. It was hard, yet energizing at the same time.(refer to quote at the top of this page)
I am also meeting with some people about an idea we have in regard to my getting going on the foundation.(refer to quote...)
I have completed my annual exam, and am scheduled for my annual mammogram and a much overdue dental exam.(refer to... with a dear friend's recent breast cancer diagnosis, I STRONGLY encourage you all to do the same, as far as "well checks" go)
I am reintroducing some socilizing back into my life.(refer...)
OK, I think you get the idea. I am not so naive to think that there won't be occassional setbacks, but I am dedicated to make some changes in my life- immediately, flamboyantly and without exception.
Before closing, I ask for your thoughts and prayers to be directed to a few of my dear friends.
First off, my friend Bonnie, is at the hospital, preparing for surgery- double masectomy- as I am typing. I will be heading to the hospital soon to see how everything is going.
Next, my buddy, Cameron, is experiencing some horrible symptoms from the same type of tumor Maddie had. Stop by to say hello to him and his fantastic family.
www.caringbridge.org/ct/cameron
Finally, our good friend, Maryah,(www.caringbridge.org/mn/maryah) is back fighting with great confidence and enthusiasm, a recurrence of ewings sarcoma. Please stop by to add your upbeat encouragement for her and her lovely family.
As always, thank you for your love and support.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, September 27, 2005 10:58 AM CDT We've had very intermittent internet service over the past month- and none at all for the last week or two- and I am going through CaringBridge withdrawal. Not only do I come to Maddie's site to read the messages left in the guestbook and reread her past journal entries for insight and strength, but I follow many children who are battling their own illnesses and have grown to love them and their families and I miss my daily "visits" to their sites.
The day to day grind continues. I have settled into a work schedule of M-W-F, 10-5:30. That leaves two weekdays and the weekend free to do housework, run errands, play, soccer games... it seemed like a good arrangement- some added $, with Keegan- but not full-time... until Sunday night. Keegan asked before bed if we were working Monday, and when I answered that we were, he announced, in no uncertain terms, that he did not want to go to work. I thought that he may forget about it after a good night's sleep- but no such luck. He woke up with the mindset that we were staying home. I convinced him- after much prodding and many additional toys packed- that a day at work might be OK...until we arrived. He threw a fit (in front of a customer) like one I have NEVER seen from him. Luckily, his dad was working from his house and was willing to pick him up and have him there for the day. Keegan has gone from having me all to himself, at home, doing pretty much whatever he wants to do all day long- to working 3 very long days, in a very confined space, without all his toys, etc...
He has done so very well most days, and Monday he flexed his almost 3 year old muscles and said, "No way." Needless to say, I think the lustre of working has worn off...
Charlotte and Ashley both seem to be doing pretty well. Charlotte is keeping up with school, soccer and socializing. She just read one of my favorite books, "Forever Ours," by Janis Amatuzio, for her mid-quarter english project. I read her paper before she turned it in, and it was so wonderful to see the insight and peace she gleaned from reading the book. As a family, we work every day to find some peace and positivity amidst our incredible grief missing Maddie. I'm always so relieved when I see the kids in a good moment...
It was a soccer-filled weekend- both a practice and a game each on Saturday and Sunday. Sunday night, Chach could really feel the extra workouts in her very sore thigh muscles...
She even managed to attend a friend's Friday night birthday party. She does a great job of taking care of all aspects of her very busy 13 year old life.
Ashley attended her first U of M football game (against Purdue) on Saturday. (Minnesota won, in double overtime- although Ash was so tired she left at halftime, missing much of the excitement.) It was so funny to talk to her- she told me she didn't understand football. After further questioning, I came to understand what she really meant was that she didn't understand the fan protocol- it seems that there are routines everyone does depending on what is happening on the field- one thing if it's a first down, something else if a touchdown is scored, something completely different for a sack... she referred to the fans as being in a "cult", and it being her first game, she has yet to have been indoctrinated...
She continues to love college life- the classes, the new friends, living on campus... just not the dorm food, and being so close I am able to run down some home cooking on occasion- and, at times, we go down as a family and take her out to eat. Last Thursday we did just that. She had arranged a dinner date with Keegan and Rich (Keegan's dad). Rich had agreed to take Ash to get a U sweatshirt to wear to the Homecoming game, and she had "invited" him to take her to dinner, too. Charlotte and I decided to join them. (good move on Chach's part, as she got a U of M soccer sweatshirt out of the deal!) Anyhow, after a nice evening of shopping, eating and spending time together, we drove Ash back to her dorm and decided to stop in briefly. (nice for me, as I was able to use her internet connection to check email!)
Walking behind Ashley, ChaChi and Keegan, I unexpectedly found myself in one of those moments that literally takes my breath away. Ashley was carrying Keegan on her back, and she and Chach were walking with arms interlocked. Unable to breathe, with tears filling my eyes, I was struck both by their immense love for each other and their ability to demonstrate it so openly, as well as by my profoundly intense grief, missing the sight of Maddie's arm interlocked with her sister's. This pain was one I chose not to share with the kids, as they were having a lovely evening just being together- and I was able to pull it together before we got into the light inside... it is a constant juggling act...
With all the turmoil going on in our personal lives, in the lives of so many both nationally and internationally, I have decided to close today with this quote:
If there is to be peace in the world,
There must be peace in the nations.
If there is to be peace in the nations,
There must be peace in the cities.
If there is to be peace in the cities,
There must be peace between neighbors.
If there is to be peace between neighbors,
There must be peace in the home.
If there is to be peace in the home,
There must be peace in the heart.
-Chinese Philosopher Lao-Tse- 6th Century
Continuing, daily, to search for peace in my heart...
As always, we truly appreciate your continued support and love.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, September 6, 2005 10:55 AM CDT September 6, 2005.
16 months. 1st day of school. 16 months. 1st day of school...
So many emotions filling my head and heart.
"Some people come into our lives and quickly go. Some people stay for awhile and leave footprints on our heart, and we are never, ever the same."
-Flavia Weedn
Maddie's physical presence left us 16 months ago today. Her enormous spirit dances in our hearts without ceasing. Thoughts of her fill our every day- bringing smiles, laughter, warmth and tears. As individuals and as a family, we press ahead, embracing the opportunities that each new phase of life presents, including Maddie in every aspect that we can- at the same time missing all that her physical contribution meant to our family- her calming, steady emotions, her quirky sense of humor, her unconditional love of family and friends, her ability to see the best in everyone...
Maddie had the smallest feet of all of us- a tiny size 5- yet the footprints she has left on our hearts are GIGANTIC, and we will never, ever be the same.
The first day of school.
"There is always one moment in childhood when the door opens and lets the future in."
-Deepak Chopra
Maybe today Ashley and/or Charlotte will find themselves in that moment. We moved Ashley into her dorm last Thursday. Carrying all that she had accumulated in preparation for the move into a single room, I was struck by how tiny the space was. Last night ChaChi and I stopped down to visit and I realized just the opposite is true. Yes, the actual space is quite small, but this time in Ashley's life, and all the opportunities that come with it, is HUGE. For the first time in her life, she is steering the ship. She has taken that little room and infused her creative personality and love for her family and friends into it. It is absolutely darling. She is ready to embrace the unknown of college life. Last week, when I came home after getting her settled, I found a letter on my pillow from her. It read:
"Mom,
It's time to set me free into the world!-... Rest assured that the knowledge, wisdom, morals and values you shared and taught are deep within my heart!..."
I have always said that our single biggest responsibility as parents is to give our children the firmest grounding we can- so that when it is time, they can spread their wings and fly, secure in the knowledge that they are loved and have been given the tools needed to soar. I am so happy that Ashley recognizes that this is her time- and that she knows that we are all cheering for her and remain right by her side to help and encourage her as she begins this part of her journey.
Today I drove Chach to her first day of 8th grade. 8th grade. Charlotte and her friends are finally top dogs, and boy are they ready! She looked adorable- had carefully selected just the right outfit to convey an image of trendy sophistication. She is already talking about her science fair and history day projects. She seems to appreciate the opportunities being the "biggest" presents, and is aware that this year will prepare her for high school- WOW, did I say HIGH SCHOOL?! She is growing up to be such a neat kid- looser than her older sister, Ashley, more "girly" than her older sister, Maddie... social, caring, confidant, and still my baby girl. I'm excited to see the evolution to high school student that will take place throughout this year.
Keegan is two and a half months shy of his 3rd birthday. He continues to be such a joy in all of our lives. He presses the boundaries a bit- just enough to test what he should and shouldn't do- but remains a happy, silly, smart, loving, compassionate boy. In a conversation I had last week, a friend pointed out the many similarities he and Maddie share- I loved that realization- Maddie's spirit really IS alive in Keegan. Keegan and I have taken on a part-time job. We are working at a children's clothing store- Spirit Kids- up on 50th and France, where my business was for 15 years, just up until his birth. He is soooo good while we work. We pack a lunch box for him, and a backpack filled with toys, movies, books and color crayons to keep him busy. He has worked several 7 1/2 hour shifts, without so much as a complaint. It is a good compromise for me- a little added income, an environment that I am quite comfortable in (for those of you who didn't know me "pre-diagnosis", my sister and I had a great retail business specializing in children's clothing, home accessories, jewelry and gifts), without giving up precious time with Keegan. It has been good, but difficult, getting out of the house- a mixed bag.
"The family is one of nature's masterpieces."
-George Santayana
How true is that?! What a masterpiece my family is- full of a rainbow of colors, shapes and expressions that make us uniquely us. I am aware of how blessed I am that God chose me to have the 4 wonderful children I do, and all the experiences that come with them.
I encourage you all to reflect on your blessings- I sometimes find myself so caught up in sorrow that I forget to do just that- and to send prayers of support to all facing extraordinary life challenges.
As always, thank you for your continued love and support.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Friday, August 26, 2005 6:46 AM CDT Good Morning!
Just a VERY quick update to let you know that we are doing OK (I've had a few private emails expressing concern, as there have been no recent updates).
We are all busy packing in all that end-of-summer, beginning-of-school brings. Ashley is moving into her dorm Sept. 1st now- so she is hurriedly gathering school/dorm supplies. ChaChi is also preparing for school and fall soccer, and Keegan and I are... WORKING!!! Yes, you read that correctly, Keegan and I have taken on a part-time job- I'll fill you in on the details in my next update.
Right now I am dealing with a really crummy summer cold- it has made it through the rank and file, ending up with me! I haven't slept in 2 nights (truly), but I've had lots of extra time that way to pull the house together for Charlotte's birthday party. She will be hosting 50 friends tonight to celebrate her entrance to TEENAGE life tomorrow, August 27. The party actually starts around 1:30 today, with a group of her friends going with us to do a service project. The onslaught of kids arrive at 6:00 pm, and then I believe about 15 will slumber(not!) here, as well. So, needless to say, by 1:30 tomorrow I should be thoroughly exhausted!
That's all for now- housework/ party planning is calling my name...
I promise to update soon.
Thanks for checking in- we truly appreciate your love and support.
With love,
(a very tired)Julie- Ashley, MAddie, Charlotte and Keegan's mom
Monday, August 8, 2005 9:15 AM CDT I have been in a funk lately, thus another stretch without an update. There are several identifiable contributors to this state, and countless I am not able to put my finger on, I am sure. For some time I have gone to bed thinking, "Tomorrow I will journal," and then tomorrow becomes yesterday...
in any event, I think it helps to put my feelings into words, so here goes...
Saturday, August 6, 2005, marked my parent's 5oth wedding anniversary. 50 years- truly amazing. 8 children, countless foster children and foreign exchange students, 12 grandchildren- and all that nuturing so many relationships brings- goodness knows how many grocery runs, doctors appointments, parent-teacher conferences... filling the role of protector, referee, provider, supporter, consoler, advisor, confidante...
Growing up, my night time prayers often included a plea for my parents to stay together- providing so much for so many took tremendous strength, and at times the toll it took on my parent's relationship was evident. What my youth and inexperience couldn't clearly recognize during the challenging times was the depth of commitment that my parents have- for one another and for each one of us kids who they daily made extreme sacrifices for.
There have been numerous joys and sorrows that my parents have endured throughout their married lives. As an adult, I now recognize the depth of their commitment to support the other completely and without condition. Enduring love doesn't just happen- it takes extraordinary effort- but if you find a partner willing to ride the ride with you- happy, sad and everything inbetween- how truly fortunate you are.
Happy anniversary, Mom and Dad. Your loving example is truly inspiring.
Saturday also marked 15 months since Maddie took her heavenly flight.
Not a day has passed that her physical presence has not been profoundly missed. I know, with great certainty, that she is fine and is blissfully experiencing something my mind cannot even conceive- Thank God, beause without that certainty I don't know where I would be.
Knowing this does not ease my personal pain. I am so grateful for the wonderful children I have, and for their willingness to demonstrate such love for me and each other. I enthusiastically embrace their lives, their milestones, experiences... I know what an extreme priviledge motherhood is.
There is, however, an underlying ache with each breath. 15 months. Seems, on some levels, like a significant amount of time. Many of the people who surrounded us early on have resumed their "normal" lives- which is very understandable, life does go on and there are jobs, children... and yet, this is a new "normal" for me. I will never again be the person I was when the words "pontine glioma" did not exist in my vocabulary- and I remain very much in the infantile stage of my new "normal."
In her essay I remember Maddie writing that early after diagnosis she felt as if she were a foreign visitor to her own thoughts and emotions- how insightful. I find myself feeling awkward in my own body at times. I was a person who used to "take the bull by the horns" and now I feel almost paralyzed sometimes, uncertain of how to move forward, and yet recognizing that I must. Maddie quickly found a way to claim this new life as her own, not allowing this unchosen path to steal her joy for life. My speed dial is obviously set at a slower pace. I came across a quote that resonates with me:
"The difference between holding onto a hurt or releasing it with forgiveness is like laying your head down at night on a pillow filled with thorns or a pillow filled with rose petals."
-Loren Fischer
On a lighter note, Ashley, ChaChi and Keegan are well. Ash will move into her dorm (sigh) on September 3. She is excitedly shopping, gathering sheets, towels and other supplies to put her style stamp on her new living space. She is also looking forward to the new friendships and experiences she is about to embark on... truly a world of possibilities.
ChaChi is about to take the reigns as the "biggest" in middle school. That's right, watch out, because Chach and her friends are now the EIGHTH GRADERS. Whoa- am I in a time warp, or what? It seems like only yesterday that I was walking her, daily, into kindergarten, and sitting in the room with her while she went through separation anxiety... now she is my most social, running out the door to her next adventure, barely looking back over her shoulder as she calls out, "Love you, mom!" She turns 13 on August 27th... another teenager...
Keegan is a doll. He lights up every room he walks into, and has every single one of us wrapped around his sweet little finger. I am soooooo glad that I have some time before he's running out the door to school- my heart aches even thinking about that day.
As always, I thank you all for your continued love and support- it means so very much.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Update added Wednesday, July 13, 8:30 PM My Uncle Paul, my dad's brother, died unexpectedly this week. Although growing up our visits were infrequent, he made a huge, positive impression on me and my siblings- the kind of goofy, play-with-the-kids uncle that every child dreams of. Ashley, Maddie and Charlotte spent many summers visiting my parents in Pennsylvania, and a highlight of every trip was spending time with their Great Uncle Paul on his farm- when we got the news, I sat with Ashley and listened to her rattle off some of his standard jokes and watched as she demonstrated many of his silly tricks. It is wonderful to see how his vibrant personality has also impacted my children so enormously. My uncle was an organ donor, and was in incredibly good health- how great that his generous spirit will live on, continuing to infuse that sunshine that surrounded him in so many more lives...
Uncle Paul had only one child, my cousin Martin. Their relationship is not just that of father and son, they truly are best friends. I know that Martin and my Aunt Dolly are going to miss his physical presence so very much. In addition to them, there are his siblings, their spouses and children... and so many extended family and friends whose hearts are aching. I pray for peace and strength for all of us.
Losing Ryan and my uncle this week has given me much need for reflection. I have read Maddie's poem many times in the last few days, and think it's worth posting here again.
What if the sun didn't shine tomorrow?
What if we didn't ever waken?
What if our lives were ended?
What if our lives were all taken?
Would you be happy with your life?
Would you rest in peace?
Would you leave with no regrets
If you were suddenly deceased?
Don't go to sleep tonight
With regrets for tomorrow
Never go to bed angry
Don't fill yourself with sorrow
Kiss all your family before you sleep
Wish everyone a prayer
Because what if there wasn't a tomorrow?
We can't tell the future from here
Try not to fight (and if you do)
Always be ready for a following kiss
It's just not worth it to leave this world angry
Or cry for someone you miss
So tonight go to sleep happy
Because tomorrow isn't guaranteed
And anger sorrow and tears
Are not what you need
-Madeline Taylor Paguyo
As some of you already know, my little buddy, Ryan Brown, won his earthly battle yesterday afternoon and four wheeled it to heaven. I care deeply about so many families who are challenged by illnesses, but I save a very special place for those who are dealing with pediatric brain tumors, more specifically diffuse pontine gliomas, because it was this diagnosis that so dramatically changed our lives on April 28, 2003. The bond that I have with Ryan and his wonderful family is one that runs very deep. I have grown to love them, feeling their pain, anxiety, exhaustion... as well as their joy, committment, hope and love throughout the past many months. While I truly am happy for Ryan, as he has now achieved that which we all aspire to, I know that this trying journey continues for his mom and dad, Andrea and Phillip, for his baby sister, Elizabeth, for his Nana Sherry, and for the countless extended family and friends who are left here, missing him. Please continue to stop by his site and offer your love and support. www.caringbridge.org/ky/ryanbrown
I often look to Maddie for her wisdom when I am struggling. There is a guestbook entry that Maddie left for another child and her family when this child was nearing the end of her earthly life. I find such peace in her words that I thought I would share them again.
"Why do certain people go through things like this? Why do these kind of things happen to great people? I've spent the last several months trying to figure out the answer to that question. The truth is no one should have to go through things such as this. I gave up on there being a reason after telling so many people that there was...
But even though we may give up on there being a reason, maybe there really is one. Maybe no one knows that reason exactly except for (Ryan) and (his) new friends. Maybe there's another page to the story that we are soon to learn...
I know this doesn't heal all the pain that you are feeling, but it could possibly help. I know there's a reason to life, but what is it? Why do you live if you are just going to die? Just like we don't have a definite answer to that, we don't to suffering either. Though we don't have an answer, we have to accept that there is sure to be a reason behind it... we just may not know it..."
"Even in the desolate wilderness, stars still can shine."
-Aoi Nozami
-Maddie
Praying that we will see those shining stars...
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Monday, July 11, 2005 8:04 AM CDT As some of you already know, my little buddy, Ryan Brown, won his earthly battle yesterday afternoon and four wheeled it to heaven. I care deeply about so many families who are challenged by illnesses, but I save a very special place for those who are dealing with pediatric brain tumors, more specifically diffuse pontine gliomas, because it was this diagnosis that so dramatically changed our lives on April 28, 2003. The bond that I have with Ryan and his wonderful family is one that runs very deep. I have grown to love them, feeling their pain, anxiety, exhaustion... as well as their joy, committment, hope and love throughout the past many months. While I truly am happy for Ryan, as he has now achieved that which we all aspire to, I know that this trying journey continues for his mom and dad, Andrea and Phillip, for his baby sister, Elizabeth, for his Nana Sherry, and for the countless extended family and friends who are left here, missing him. Please continue to stop by his site and offer your love and support. www.caringbridge.org/ky/ryanbrown
I often look to Maddie for her wisdom when I am struggling. There is a guestbook entry that Maddie left for another child and her family when she was nearing the end of her earthly life. I find such peace in her words that I thought I would share them again.
"Why do certain people go through things like this? Why do these kind of things happen to great people? I've spent the last several months trying to figure out the answer to that question. The truth is no one should have to go through things such as this. I gave up on there being a reason after telling so many people that there was...
But even though we may give up on there being a reason, maybe there really is one. Maybe no one knows that reason exactly except for (Ryan) and (his) new friends. Maybe there's another page to the story that we are soon to learn...
I know this doesn't heal all the pain that you are feeling, but it could possibly help. I know there's a reason to life, but what is it? Why do you live if you are just going to die? Just like we don't have a definite answer to that, we don't to suffering either. Though we don't have an answer, we have to accept that there is sure to be a reason behind it... we just may not know it..."
"Even in the desolate wilderness, stars still can shine."
-Aoi Nozami
-Maddie
Praying that we will see those shining stars...
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Sunday, June 26, 2005 4:54 PM CDT ****Update, Wednesday, July 6th
PLEASE send extra prayers, positive thoughts, wishes... out to my little buddy, Ryan and his family. He is having a very difficult time physically, and I know the hearts of all those that love him are breaking.
www.caringbridge.org/ky/ryanbrown****
Wow-
It's certainly been a long time between updates- life certainly has a way of clicking by at such a fast pace...
The Sioux Falls soccer tournament I last wrote about turned out to be a ton of fun- and quite successful for ChaChi's team. They played beautifully throughout the weekend, advancing all the way to the championship game. Although they lost that game, they not only took 2nd place, they gained the respect of so many other players and spectators, as their very skilled, controlled style of play is not the norm at their young age. As a group, the girls are delightful. If they can hang together as a team, we will see remarkable soccer accomplishments throughout the years. Preterra, Keegan and I used the weekend as a mini vacation, and in addition to having fun together, we spent time connecting with quite a few of the families and players who had also made the trip. Keegan and his charming personality drew many people in, adding greatly to our experience.
Ashley's graduation party was also a huge success. My brother, Jude, decided to undertake the construction of a new backyard deck just shortly before the event. He worked very hard, and despite my doubts, we were able to unveil the newly built, largely expanded deck for the party. The weather cooperated, and a beautiful outdoor evening was shared with many wonderful family and friends- from teachers, classmates and parents dating back to Ashley's first grade year, to newly developing friendships, to countless people who have joined in Ashley's life throughout the years. The food was fantastic, the life-sized photos I had done of the kids were a huge hit, the amazing photo boards Ashley put together were stunning and memory filled, the slide show Rich made celebrating Ashley's life-to-date was amazing, and all the help my sisters, Tricia and Sara, gave to pull it all together was tremendous. Throughout the evening, I could feel Maddie's presence and I truly sensed her delight that our life celebrations continue in such fine fashion.
Yesterday, Charlotte and I attended a gathering for our friend, Denny. For those of you who have been following my journaling, you will recall that Denny died in February, after having battled cancer for many, many years. Yesterday, on a gorgeous summer afternoon, many of her family and friends came together to reflect on, recount and celebrate her life- a life very well lived. The spot where her ashes are now buried beautifully catches the morning sun and is just 2 blocks away from the home she lived and raised her 2 gorgeous girls, Amanda and Allison, in- close enough that you can probably smell the fragrances that rise from the amazing garden that she planted and so lovingly tended. I miss my friend's physical presence greatly, but I have been given ongoing reminders of her continued spiritual presence, and for that I am grateful.
There are two children I have been keeping you updated on and asking your support of.
The first is my buddy, Ryan Brown, from Kentucky. Ryan shares Maddie's diagnosis and has bravely and joyfully battled for 15 months- a length of time almost unheard of with this diagnosis. Sadly, symptoms that indicate tumor growth have been increasing over the past several weeks and grave complications are showing their ugliness. In spite of this, Ryan, his mom and dad, Andrea & Phillip, his Nana Sherry, baby sister, Elizabeth, and the rest of their extended family and many friends refuse to allow that darn tumor to win. They refuse to allow it to steal their joy and take over their hearts. This is a family who truly grasps the concept of living life to its fullest- they understand both the gift of life and its fragility. I count them among my very closest friends, and again ask for you to extend your love, prayers and support to them. www.caringbridge.org/ky/ryanbrown
I have struggled over the past week with how, or if, I would relay this next information. I've thought a lot about how Maddie would handle this...
The other child I have been updating you on is Kaidrie, from Utah. Her mother, Amber, and I have been communicating via phone and email for sometime. Kaidrie also shared Maddie's diagnosis and her time frame is almost identical to Ryan's. It was brought to my attention a week ago, and verified throughout the week by an ongoing investigation, that this story is completely fraudulant- there is NO Kaidrie, there is NO Amber... the story, in its entirety, was fabricated by a woman, for reasons completely unknown to me, who doesn't even have a daughter. Initially I was outraged and felt quite emotionally violated- having shared intimate details of Maddie's illness and death. I personally know several of the other families who this woman also contacted- all families either grieving the recent loss of their children, or families currently fighting overwhelming odds to find earthly healing for their children. This woman also befriended Mary, from Tumbleweed(www.tumbleweedfoundation.org), and tapped into her enormous heart, using both Mary's compassion and connections to reach more people with this make-believe story. I am so very sorry for any hurt this woman's dishonesty has caused any of my dear friends.
Reflecting on how Maddie would handle this, my initial anger has been transformed.
Consider:
** We can all be happy to know that there is one less child who has been diagnosed with this deadly tumor.
** As I explained to "Amber," I share my story in the hopes that it may help other families traveling similar roads- in helping others, I am also helping myself to heal.
** Throughout this ordeal, I have had many occassions to speak with Mary from Tumbleweed. She and Maddie had corresponded some throughout Maddie's illness, and I know Maddie really appreciated Mary's efforts to honor Julia(www.caringbridge.org/pa/julialevy) by reaching out to children and their families who are battling various illnesses. Mary's unselfish and tireless efforts are to be commended, and as a result of these unfortunate events, I believe new focus and energy will be cast on Tumbleweed, bringing many more capable volunteers to advance its wonderful work.
** Finally, the woman who concocted this story is obviously not without many serious problems. She tapped into a community of many loving people. My mantra this week has been, "She contacted the right people, but used the wrong vehicle." Anyone of us would have readily lended a sympathetic ear and compassionate support to help her with her real life challenges. I truly hope she gets the loving and urgent help she needs, and that collectively we can find it in our hearts not to throw stones, but to offer forgiveness.
The genuine friendships and continued support our family has received through sharing our story and opening our hearts is unquantifiable. We will continue on in this manner.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Thursday, June 9, 2005 10:02 PM CDT It's been a loooooong day and I am tired- but I thought I should write a quick update before turning in tonight.
First off, I have a little buddy who has been weighing heavily on my heart and mind. He is just shy of his 5th birthday, he shares Maddie's diagnosis, he is almost(lol) as cute as my own children, he has a courageous and loving personality... and he has climbed right inside and grabbed hold of my heart. Ryan,(www.caringbridge.org/ky/ryanbrown) has developed many of the symptoms that come along with tumor growth, and his strong, feisty little body is slowing down. PLEASE stop by his site to offer your awesome love and support to him and to his amazing family. I cannot express to you just how much a kind message means as we navigate these unthinkable waters. Ryan, Elizabeth, Andrea, Phillip and Nana Sherry- We love you, and we are keeping you very close to our hearts!
Today was a big day for our family. I began my day by attending Anthony Middle School's 8th grade "Completion Ceremony." My role today was to award the "Madeline Taylor Paguyo Award" given to the eighth grade student who most exemplified the "courage, perseverance, love, and kindness... citizenship at school, commitment to academic excellence and love of life..." that Maddie had demonstrated throughout her time at Anthony.(throughout her entire life, really). Anne Brooker was the recipient of this first annual award, and I couldn't be happier with the selection. Please go to her website to learn more about this inspiring girl!(www.dragonflyproject.org).
Today was also graduation day for my daughter, Ashley. That's right, we watched my first baby GRADUATE from high school tonight. Keegan got a little restless and we had to step to the back of the auditorium to allow him to run a bit. I bumped into a friend of mine who finds himself in a similar family situation (older children, and now toddlers, too!), and he reminded me of the fact that we first met when our bigwig graduates were toddlers themselves... truly, in so many ways it feels like a blink of the eye... I am soooooo proud of the person Ashley has grown up to be. In addition to her stellar academics, creativity, sensibility, passion, inner and outer beauty, fantastic sense of humor... she is really one of the nicest people I know, and I am so fortunate to have her as my daughter.
WAY TO GO, ASHLEY!!!!! I LOVE YOU SO MUCH!!!!!!!!!!!!!!!
Today was Charlotte's last day of school! Yippee!!!!!!!!
We LOVE summer vacation at our house- not a lot scheduled, but a lot of r&r and time spent together. I am so happy to have the girls home with me and Keegan. Tomorrow, Charlotte, Keegan and I will be heading to Sioux Falls, South Dakota for a soccer tournament that ChaChi's team will be playing in. Preterra(Charlotte's friend), will be joining us. Ashley is taking a pass so that she can hit the many Open House parties that her friends will be having to celebrate graduation. The trip should be fun- please let the weather be nice! And Ashley, have a great time and be careful.(I know she's 18, but I'm her mom!!!)
Next week, Saturday, June 18th, from 6-9 pm we will be having Ashley's Open House. If you are in the area and would like to drop by, we'd love to see you.
That's it for tonight. This momma is going to hit the pillow and get some much needed sleep.
Thank you all for your continued love and support.
I'll let you know how we fare in the tournament.
GO KELIIX!!!
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, May 17, 2005 10:13 AM CDT Good Morning!
Another cold and rainy day here in Minnesota- it appears that since we were spoiled by a relatively mild winter, the weather gods are making up for it with this ridiculous run of cold, wet days! Keegan and I had been spending a lot of time outdoors riding his tricycle and car- even had the wading pool out a couple of days- but for the last few weeks it has been inside fun...
We have had a lot going on in our lives since I last updated. May 6 was the one year anniversary of Maddie's flight to heaven. The 2 weeks leading up to that day were really hard for me emotionally- I was surprised, actually, by how difficult. That day I woke up happily. It was if Maddie herself was holding me, reminding me of how happy and well she is now. Instead of the overwhelming sadness that I expected to feel, I felt peaceful. It turned out to be a beautiful day- full of sunshine and warmth- and we spent it just as we should have- together as a family, surrounded by so many of Maddie's fantastic friends, celebrating her life from breakfast all the way through into the night. Thank you to everyone who continues to support us. Your physical presence, the cards, flowers, phone calls, prayers, kind thoughts and positive energy... we are so blessed to have the love that surrounds us and we are grateful for the many ways that love is demonstrated.
The girls are busy finishing projects as the school year winds down. Between homework, soccer, and her social life, ChaChi has little time to squeeze in sleep- just the way she likes it! In addition to her own games, she has been asked to play "up" on the U14 team for some of their games, so soccer fills many of our days... if only I could get those weather gods to lighten up on the cold rain- I LOVE to watch her play, but I am a weather wimp... I come home from many a game and jump right into a HOT bath, as I am chilled to the bone! This Thursday, Charlotte and I will be going, with a group of her friends and their moms, to see "Lion King." I took all 3 of my girls many years ago to see it- it previewed here in Minneapolis before it began its' run on Broadway- and it is easily the best show I have ever seen. I am looking forward both to the show, and to some mom-daughter time with Charlotte. Next week, her choir class is putting on the musical, "Music Man." Every year since Ashley was in 7th grade, I have looked forward the the musical. Ms. Quehl, the choir teacher, has become a dear friend to me and all of my girls. She astounds me with the shows she coordinates year after year- she gets the kids to really give their all to these performances.
Ashley is busy... senior year is coming quickly to an end. In addition to end-of-the-year projects, papers, finals... there is graduation and her graduation party to plan. She put together the most creative party invitation- anyone who knows her well would expect no less. She has decided on the U of Minnesota for school next year- and there is paper work to fill out, orientation and scholarship receptions to attend... and I must say, she has been quite organized in her handling of it all. Last Friday was prom. Ashley and her boyfriend, Max, went together again this year. Last year prom took place 2 days after Maddie's memorial service, and I did very little to help Ash get ready for it. This year I was a little more helpful, and it was fun to be a part of it all. Of course, they are a stunning couple and they looked fantastic.
Keegan is my best little buddy. Growing by leaps and bounds(check out the photo on the photo page to see how LONG he is!)- he continues to delight everyone with his words and actions. He is so sensitive, yet he shares the same mischievious sense of humor his sisters have... his sly grin reminds me so much of Maddie- who he continues to speak of and send kisses to every single day.
Here is the third butterfly poem I promised...
BUTTERFLY CHILD
When I first saw you
Standing in the morning dew
Butterflies were dancing in your hair.
Holding you seemed
As impossible as a dream
As I reached out to touch you,
you were no longer there.
How could I know
That I'd ever let you go?
The butterflies and
you were much too rare.
You fluttered away
And I couldn't make you stay
The call of the wild was
much too strong to bear.
Butterfly child
You're running wild
Up in the air, lovely and rare
Gentle and mild.
-Author unknown
As I've written often, I frequently go back and read Maddie's writings as a source of inspiration and a connection to my beautiful girl. On September 3, 2003, Maddie ended her journal with a prayer for us all. She clearly recognized the power of prayer and encouraged us all to realize how great a force our prayers and positive thoughts can be. I will sign off today, thanking you all for your love, with the same prayer.
May today there be peace within.
May you trust your highest power that you are exactly where you are meant to be...
May you not forget the infinite possibilities born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you...
May you be content knowing that you are a child of God.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Thursday, April 28, 2005 10:46 AM CDT (NEW PHOTO ADDED TO PHOTO PAGE)
As promised, I will share another
of the poems that Maddie shared with Judy, grieving for her daughter, Julia.(caringbridge.org/pa/julia)
His Butterflies
Too many heartaches to fathom
And roads too rocky to tell
But God reaches out to be our friend
And bids us rest a spell
He sends us a butterfly
A kiss from Him
A message from the sky
We know not when this road will end
There may yet be another bend
But when we cry
He sends us a butterfly
He sees our every struggle
And tears fill up His eyes
You're not alone, you're almost Home
My arms are open wide
He sends us a butterfly
A kiss from Him
A message from the sky
We know not when this road will end
There may yet be another bend
But when we cry
He sends us a butterfly
-author unknown
Butterflies have come to symbolize so much for our family- peace, grace, beauty, life... Maddie. I am so happy that spring has arrived(more or less, for those of you who live in Minnesota), because with this season comes the return of the butterfly. Frequent reminders of Maddie's gifts present in our lives.
Today is another of those significant dates in my family's life. Two years ago, April 28, 2003, was diagnosis day- one of those days that has been etched so deeply in my mind, heart and soul, that I can literally see, hear, smell, taste and touch it. Maddie wrote an essay about the day and weeks that followed for an 8th grade English assignment. I have shared it before in this journal, but it's message is again very fitting for this day. Maddie's ability to take you through all that she experienced- to really allow you to get inside her- is amazing, and the evolution she takes us through leaves another of her many gifts for all- PEACE.
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. "Come on," I thought. "I want to go home."
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
"We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass."
The words all ran together from there. A brain tumor? Me? Why? I can't say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream;
survival rates, treatment plans, neurological tests, tears.
The shock was so great and yet the feeling was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July.
My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew. My legs shook like a toddler taking their first steps. My mother's arm turned purple as I grasped it in my sweating hands for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try; for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I'd forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
"Mom!" I tried yelling. Nothing came out. "Mom!" I fought through my coughing.
I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
"Maddie, are you okay?" my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I'd exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. "Pontine glioma," everyone around me was whispering. The same pain was still present. "Oww, make it stop," I remember saying, or maybe it was just a thought.
My mind was rolling with "what ifs" and "how abouts". On the outside I remained calm and unbelievably tolerant. I knew in order to get better, I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me.
With a smile on my face and all that pain inside me, I felt a warmness.I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on, whatever happens, happens. We can only fight for what is ours. We can't rewind time, we can't erase chapters in our lives, we just have to live them.
The many chapters Maddie lived in 14 short years didn't create a novel- they built an entire library. Frequently I find myself browsing that library researching how to successfully navigate through life. Maddie did it so well. She exuded true joy and generously shared it with everyone she could. When confronted, at such a young age, with the biggest challenge anyone can imagine, she stared it right in the eyes, told the tumor to take a hike, and chose happiness. Simple as that. She chose to live, and every one of us who were priviledged by her presence in our lives lived right along with her, learning from her example.
I again thank you all for your love and support. I miss my Maddie's physical presence so very much, but I continue to be blessed every day by the many gifts she and her siblings give to me.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, April 19, 2005 7:47 AM CDT I've been trying to compose an update since returning from our spring breaks, but I've been flooded with so many emotions, so it has been difficult to focus my words. I will start with a brief recap of our trips and see where my writing takes me...
I traveled to Florida with Charlotte and Keegan, Preterra(one of ChaChi's best friends) and Liz(Maddie's best friend since kindergarten). Our primary destination was Palm City, to finally physically connect with Susan and Mark Griffin, Jake's parents.(www.caringbridge.org/page/jakegriffin) Susan and I first started speaking by phone in June of 2003 and our relationship has evolved to such a close friendship- it seemed only natural for us to spend our vacation with them. The apparent ease between us was confirmed immediately upon connecting at the airport, and that genuine comfort was felt by all the kids, as well. We spent a laid back week together, enjoying pools and ocean- and sharing both laughter and tears as we eagerly told stories about Maddie, Jake and Susan's mom, who had died unexpectedly just one week before I would have met her, too. All 3 were obviously present with us every moment. It was so much fun to see the ocean through Keegan's eyes- he loved collecting seashells with all of us, and running full speed from the shore into my waiting arms in the water- and the girls had a blast together jumping the waves
and catching the sun.
Mid-week we spent a lovely day with Jan, Harris' mom(www.caringbridge.org/fl/harris) in Miami. We met her wonderful friend, Sandy, with whom we spent the night-kicked around Bayside trinket shopping- where we were also able to catch a bite to eat with our dear friend, Jackie- and we ended the day with a short tour of South Beach- enough time to realize there is never enough time to take in the full experience of that place!
We returned to Palm City late Thursday, as we really wanted to spend all day Friday the 8th(the 1 year anniversary of Jake's death) with Mark and Susan. The girls were extremely thoughtful in their efforts to lovingly recognize the day, and I am left to marvel at how they have taken so many of Maddie's lessons to heart, have made them their own, and now share them with others as freely as she did.
Saturday evening, the Finestone's, another Caringbridge family, stopped by Susan and Mark's to spend some time with us.(www.caringbridge.org/fl/zacharyfinestone). Zach and Chach beat Liz and Preterra in a soccer match(a point of debate, if you ask Preterra), and as we baked cookies, we adults chatted. It was so nice to connect with yet another family we have followed since shortly after beginning this journey with Maddie. I could go on and on, but the main points of the trip for me are these:
1. I could not have traveled with 4 more delightful children than I did- you guys are all so terrific, and I really do love you all.(you girls were FANTASTIC help with Keegan)
2. The biggest blessings to have come out of this very difficult journey are the incredible friends I have made. Jan, I look forward to your promised return to Minneapolis. Mark and Susan- your generosity is both overwhelming and greatly appreciated. We all hope to see you both again very soon, and Susan, you definitely have hot bunz!
Ashley spent her break with several of her good friends in Playa del Carmen, Mexico. I missed her not being with us, but also am so happy she had this "Senior Trip" to reconnect with her friends one last time before they all head off to different colleges and new experiences. With all that Ashley has had to deal with these past 2 years, some of her friendships were strained, and this trip allowed for some of that to be acknowledged, while also providing much fun and sun. She said it was a fantastic trip, and I think it better that I know that, without being exposed to every single detail...(lol)
We are coming up on quite a few important dates/events in our lives. First, this Friday, April 22nd, Southwest High School is holding an event, in Maddie's honor, to raise funds to be donated to Children's Hospital's Cancer Kids Fund. Maddie would be absolutely thrilled that her story would prompt such an act, and I am thrilled that she lives so vividly in so many people's hearts and through such kind actions. Saturday, the 23rd, is Ashley's 18th birthday. 18!!! I know it sounds cliche, but in some ways it seems like only yesterday... I clearly remember everything surrounding her birth and bringing her home from the hospital... April 28th is diagnosis day, a day that stole any innocence I still had left... May 6th is the 1st anniversary of Maddie's new life, and June 9th Ashley graduates... breathe, just keep taking deep breaths...
I have been quite emotional lately, more so than has been the norm- probably a now conscious realization of all that has transpired. Anyhow, when feeling this way I like to go back and find Maddie's words for comfort. That she would make her presence known through butterflies should have been quite obvious to me sooner- thank heavens for Keegan's clear vision- Maddie used them often to send comfort to grieving families. In one journal entry she left for Julia Levy's family(www.caringbridge.org/pa/julia), she posted 3 beautiful butterfly poems with this message:
"Judy... I was thinking about it and I thought it may help to think about Julia's death this way: Butterflies fly away in the winter, but you are going to see them again some day. Julia flew away, but you are sure to see her again some day."
The poems she shared are all so powerful. I will post them in upcoming journal entries. Today I will share the first of three:
A BUTTERFLY LIGHTS BESIDE US
"A butterfly lights beside us, like a sunbeam...
and for a brief moment it's glory
and beauty belong to this world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all."
-Author unknown
As I share just a glimpse of Maddie's rare insight and grace, I imagine you who didn't know her well may be forming a deep understanding of the immense void we who love her so dearly are feeling. It is indescribable. I am ready to begin working on a foundation in Maddie's honor. I invite anyone who would like to help me focus on accomplishing this to contact me either by phone or email. 612 823-7933/ juliedornisch@yahoo.com I am especially interested in speaking to other dpg families- although my interest is not limited only to those families. Anyone who has a passion and/or skills that you want to share in this endeavour is sincerely appreciated.
As always, thank you for your continued love and support.
Julie-Ashley, Maddie, ChaChi and Keegan's mom
Tuesday, March 22, 2005 12:36 AM CST It has been a difficult stretch of time, both emotionally and physically, so another delayed update. I thought I should attempt one today, for those of you who still check in.
I have REALLY been missing Maddie. This statement implies that there may be times when that's not the case, which is absurd- every second of every day I miss Maddie's physical presence- lately that void feels even more intense, if that's possible...
The kids and I have been sharing a horrible virus. I think it started with ChaChi. Keegan got slammed with it last Monday, and it's still hanging on. I joined him Friday night, landing in bed(for the most part) for the entire weekend and into Monday. Today I'm feeling a bit better, and Keegan is actually eating some- which is a HUGE improvement. Ashley hasn't officially "got it" yet, although faint symptoms keep popping up. I'm crossing my fingers that she'll dodge the full impact, and that the rest of us are well on our way to full recovery. We're due for a healthy go of it!
Ashley has been quite busy. She performed in the school musical, "Man of La Mancha", in a dancing role and the play just wrapped this past weekend. I took ChaChi and her friend, Brittany, to last Thursday's show and it was awesome! She has also been busy filling out scholarship applications and financial aid forms for colleges. She is, at this time, still undecided as to where she will be going in the fall, but I am very happy to say that she was accepted to all 3 universities to which she applied. Way to go, Ashley!!! She was fortunate to go with her spanish class to Costa Rica in February and had an unbelievable time. She has continued to work hard on her studies(no "senior slide" as of yet), and she seems to have found a peace(most of the time) dealing with so many different issues simultaneously. I am so proud of the person she has grown up to be. She loves her family and friends deeply, and shares her thoughts and experiences so openly with me. Her passion, insight, creativity, humor... truly makes my heart swell with pride. She is looking forward to a spring break trip in Playa del Carmen with several of her very good friends and a couple who agreed to go as chaperones. She'll be closing out her senior year with a dance trip to Boston. Yes, she has been given several wonderful opportunities, and yes, she really does appreciate them.
Charlotte continues on her very social path without missing a beat. She, too, has worked hard in school, but she also manages a social calendar that leaves my head spinning. Her friends fill my house frequently, which I love. They are all so fantastic with Keegan, and he loves them and their attention. She just attended her basketball banquet over the weekend and was named "Rookie of the Year", a well deserved honor for how hard she played. I was sorry I was just too sick to go and see her win her award! She has continued soccer training(indoors) all winter long, which has been the source of some aggravation, as she practices every Friday night(big inconvenience socially speaking), as well as Saturday and Sunday afternoons. With the arrival of spring, practices will change to being outdoors on weeknights, freeing up some of that beloved weekend social time... until games start up!!! The challenges of being a social butterfly AND a gifted athlete... She is looking forward to our spring break trip. I am taking Charlotte and Keegan, along with one of ChaChi's best friends, Preterra and Maddie's best friend, Liz, to Florida! We'll be there from April 3-10 visiting my friend, Susan(www.caringbridge.org/page/jakegriffin). For those of you who don't know, Susan is Jake Griffin's mom, the first other child we "met" through Caringbridge who had the same diagnosis as Maddie. Since meeting back in late June of 2003, she has become one of my very closest friends- and yet we have never physically spent any time together! She has graciously(crazily?) invited us to come and stay with her and her husband, Mark. Of course we never travel without a bonafide party, so the 5 of us will descend upon the Griffin household in less than 2 weeks! We plan on seeing my good friend, Jan, Harris' mom(www.caringbridge.org/fl/harris), who braved cold Minnesota's winter last January to celebrate Maddie's 14th birthday with her and us, too... and if schedules allow, we'll try to hook up with Kathy, David's mom, too!(www.caringbridge.org/fl/david) We are all so excited about this trip!!!
Keegan, aside from this past sick week, is fantastic. He is the sweetest little boy with a wonderful sense of humor. He is speaking more and more, and I had forgotten what an amazing time this is as a parent, watching your child develop so tangibly right in front of your eyes. He continues to be my best buddy and his sensitivity to me and my emotions is amazingly comforting. What a blessing he is in all of our lives. He continues to speak of his "Baboo" on a daily basis, and not a day goes by that he doesn't send many kisses and songs heavenward to her. I'm a bit warn out after a long week, but I must say that just looking at him makes my heart sing!
Before wrapping this up, I thought I'd share a couple of things that I have read recently that struck me as powerful. I was reading the post a husband made on his wife's caringbridge page thanking people after she had died. He wrote, "...You taught my family and me many important lessons over the past weeks and months- Mainly, don't wait to love! You sent that card, that email, that meal... It will never be forgotten..." What a wonderful lesson for us all to be reminded of. How fantastic it would be if we all tried to incorporate that thought into our daily lives, not just when faced with extreme circumstances. Ashley shared an experience she had over the weekend that demonstrates this so well. A friend came up to her, prompted by nothing but his sincere desire to share a beautiful observation that he had of her. I won't get into the details, but it, as Ashley told me, was the most genuine compliment she has ever received and one that lifted her spirits greatly by this friend's unselfish motivation.
The other thing I'd like to share is a quote I came across:
"The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away."
-Barbara Kingsolver
There were so many people who surrounded us during Maddie's illness and in the early months that followed. Many fell away quite quickly. Thank you to all who continue to reach out to us, your support continues to mean more than words can convey.
Have a happy Easter!
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, March 22, 2005 12:36 AM CST It has been a difficult stretch of time, both emotionally and physically, so another delayed update. I thought I should attempt one today, for those of you who still check in.
I have REALLY been missing Maddie. This statement implies that there may be times when that's not the case, which is absurd- every second of every day I miss Maddie's physical presence- lately that void feels even more intense, if that's possible...
The kids and I have been sharing a horrible virus. I think it started with ChaChi. Keegan got slammed with it last Monday, and it's still hanging on. I joined him Friday night, landing in bed(for the most part) for the entire weekend and into Monday. Today I'm feeling a bit better, and Keegan is actually eating some- which is a HUGE improvement. Ashley hasn't officially "got it" yet, although faint symptoms keep popping up. I'm crossing my fingers that she'll dodge the full impact, and that the rest of us are well on our way to full recovery. We're due for a healthy go of it!
Ashley has been quite busy. She performed in the school musical, "Man of La Mancha", in a dancing role and the play just wrapped this past weekend. I took ChaChi and her friend, Brittany, to last Thursday's show and it was awesome! She has also been busy filling out scholarship applications and financial aid forms for colleges. She is, at this time, still undecided as to where she will be going in the fall, but I am very happy to say that she was accepted to all 3 universities to which she applied. Way to go, Ashley!!! She was fortunate to go with her spanish class to Costa Rica in February and had an unbelievable time. She has continued to work hard on her studies(no "senior slide" as of yet), and she seems to have found a peace(most of the time) dealing with so many different issues simultaneously. I am so proud of the person she has grown up to be. She loves her family and friends deeply, and shares her thoughts and experiences so openly with me. Her passion, insight, creativity, humor... truly makes my heart swell with pride. She is looking forward to a spring break trip in Playa del Carmen with several of her very good friends and a couple who agreed to go as chaperones. She'll be closing out her senior year with a dance trip to Boston. Yes, she has been given several wonderful opportunities, and yes, she really does appreciate them.
Charlotte continues on her very social path without missing a beat. She, too, has worked hard in school, but she also manages a social calendar that leaves my head spinning. Her friends fill my house frequently, which I love. They are all so fantastic with Keegan, and he loves them and their attention. She just attended her basketball banquet over the weekend and was named "Rookie of the Year", a well deserved honor for how hard she played. I was sorry I was just too sick to go and see her win her award! She has continued soccer training(indoors) all winter long, which has been the source of some aggravation, as she practices every Friday night(big inconvenience socially speaking), as well as Saturday and Sunday afternoons. With the arrival of spring, practices will change to being outdoors on weeknights, freeing up some of that beloved weekend social time... until games start up!!! The challenges of being a social butterfly AND a gifted athlete... She is looking forward to our spring break trip. I am taking Charlotte and Keegan, along with one of ChaChi's best friends, Preterra and Maddie's best friend, Liz, to Florida! We'll be there from April 3-10 visiting my friend, Susan(www.caringbridge.org/page/jakegriffin). For those of you who don't know, Susan is Jake Griffin's mom, the first other child we "met" through Caringbridge who had the same diagnosis as Maddie. Since meeting back in late June of 2003, she has become one of my very closest friends- and yet we have never physically spent any time together! She has graciously(crazily?) invited us to come and stay with her and her husband, Mark. Of course we never travel without a bonafide party, so the 5 of us will descend upon the Griffin household in less than 2 weeks! We plan on seeing my good friend, Jan, Harris' mom(www.caringbridge.org/fl/harris), who braved cold Minnesota's winter last January to celebrate Maddie's 14th birthday with her and us, too... and if schedules allow, we'll try to hook up with Kathy, David's mom, too!(www.caringbridge.org/fl/david) We are all so excited about this trip!!!
Keegan, aside from this past sick week, is fantastic. He is the sweetest little boy with a wonderful sense of humor. He is speaking more and more, and I had forgotten what an amazing time this is as a parent, watching your child develop so tangibly right in front of your eyes. He continues to be my best buddy and his sensitivity to me and my emotions is amazingly comforting. What a blessing he is in all of our lives. He continues to speak of his "Baboo" on a daily basis, and not a day goes by that he doesn't send many kisses and songs heavenward to her. I'm a bit warn out after a long week, but I must say that just looking at him makes my heart sing!
Before wrapping this up, I thought I'd share a couple of things that I have read recently that struck me as powerful. I was reading the post a husband made on his wife's caringbridge page thanking people after she had died. He wrote, "...You taught my family and me many important lessons over the past weeks and months- Mainly, don't wait to love! You sent that card, that email, that meal... It will never be forgotten..." What a wonderful lesson for us all to be reminded of. How fantastic it would be if we all tried to incorporate that thought into our daily lives, not just when faced with extreme circumstances. Ashley shared an experience she had over the weekend that demonstrates this so well. A friend came up to her, prompted by nothing but his sincere desire to share a beautiful observation that he had of her. I won't get into the details, but it, as Ashley told me, was the most genuine compliment she has ever received and one that lifted her spirits greatly by this friend's unselfish motivation.
The other thing I'd like to share is a quote I came across:
"The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away."
-Barbara Kingsolver
There were so many people who surrounded us during Maddie's illness and in the early months that followed. Many fell away quite quickly. Thank you to all who continue to reach out to us, your support continue to mean more than words can convey.
Have a happy Easter!
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, March 22, 2005 12:36 AM CST It has been a difficult stretch of time, both emotionally and physically, so another delayed update. I thought I should attempt one today, for those of you who still check in.
I have REALLY been missing Maddie. This statement implies that there may be times when that's not the case, which is absurd- every second of every day I miss Maddie's physical presence- lately that void feels even more intense, if that's possible...
The kids and I have been sharing a horrible virus. I think it started with ChaChi. Keegan got slammed with it last Monday, and it's still hanging on. I joined him Friday night, landing in bed(for the most part) for the entire weekend and into Monday. Today I'm feeling a bit better, and Keegan is actually eating some- which is a HUGE improvement. Ashley hasn't officially "got it" yet, although faint symptoms keep popping up. I'm crossing my fingers that she'll dodge the full impact, and that the rest of us are well on our way to full recovery. We're due for a healthy go of it!
Ashley has been quite busy. She performed in the school musical, "Man of La Mancha", in a dancing role and the play just wrapped this past weekend. I took ChaChi and her friend, Brittany, to last Thursday's show and it was awesome! She has also been busy filling out scholarship applications and financial aid forms for colleges. She is, at this time, still undecided as to where she will be going in the fall, but I am very happy to say that she was accepted to all 3 universities to which she applied. Way to go, Ashley!!! She was fortunate to go with her spanish class to Costa Rica in February and had an unbelievable time. She has continued to work hard on her studies(no "senior slide" as of yet), and she seems to have found a peace(most of the time) dealing with so many different issues simultaneously. I am so proud of the person she has grown up to be. She loves her family and friends deeply, and shares her thoughts and experiences so openly with me. Her passion, insight, creativity, humor... truly makes my heart swell with pride. She is looking forward to a spring break trip in Playa del Carmen with several of her very good friends and a couple who agreed to go as chaperones. She'll be closing out her senior year with a dance trip to Boston. Yes, she has been given several wonderful opportunities, and yes, she really does appreciate them.
Charlotte continues on her very social path without missing a beat. She, too, has worked hard in school, but she also manages a social calendar that leaves my head spinning. Her friends fill my house frequently, which I love. They are all so fantastic with Keegan, and he loves them and their attention. She just attended her basketball banquet over the weekend and was named "Rookie of the Year", a well deserved honor for how hard she played. I was sorry I was just too sick to go and see her win her award! She has continued soccer training(indoors) all winter long, which has been the source of some aggravation, as she practices every Friday night(big inconvenience socially speaking), as well as Saturday and Sunday afternoons. With the arrival of spring, practices will change to being outdoors on weeknights, freeing up some of that beloved weekend social time... until games start up!!! The challenges of being a social butterfly AND a gifted athlete... She is looking forward to our spring break trip. I am taking Charlotte and Keegan, along with one of ChaChi's best friends, Preterra and Maddie's best friend, Liz, to Florida! We'll be there from April 3-10 visiting my friend, Susan(www.caringbridge.org/page/jakegriffin). For those of you who don't know, Susan is Jake Griffin's mom, the first other child we "met" through Caringbridge who had the same diagnosis as Maddie. Since meeting back in late June of 2003, she has become one of my very closest friends- and yet we have never physically spent any time together! She has graciously(crazily?) invited us to come and stay with her and her husband, Mark. Of course we never travel without a bonafide party, so the 5 of us will descend upon the Griffin household in less than 2 weeks! We plan on seeing my good friend, Jan, Harris' mom(www.caringbridge.org/fl/harris), who braved cold Minnesota's winter last January to celebrate Maddie's 14th birthday with her and us, too... and if schedules allow, we'll try to hook up with Kathy, David's mom, too!(www.caringbridge.org/fl/david) We are all so excited about this trip!!!
Keegan, aside from this past sick week, is fantastic. He is the sweetest little boy with a wonderful sense of humor. He is speaking more and more, and I had forgotten what an amazing time this is as a parent, watching your child develop so tangibly right in front of your eyes. He continues to be my best buddy and his sensitivity to me and my emotions is amazingly comforting. What a blessing he is in all of our lives. He continues to speak of his "Baboo" on a daily basis, and not a day goes by that he doesn't send many kisses and songs heavenward to her. I'm a bit warn out after a long week, but I must say that just looking at him makes my heart sing!
Before wrapping this up, I thought I'd share a couple of things that I have read recently that struck me as powerful. I was reading the post a husband made on his wife's caringbridge page thanking people after she had died. He wrote, "...You taught my family and me many important lessons over the past weeks and months- Mainly, don't wait to love! You sent that card, that email, that meal... It will never be forgotten..." What a wonderful lesson for us all to be reminded of. How fantastic it would be if we all tried to incorporate that thought into our daily lives, not just when faced with extreme circumstances. Ashley shared an experience she had over the weekend that demonstrates this so well. A friend came up to her, prompted by nothing but his sincere desire to share a beautiful observation that he had of her. I won't get into the details, but it, as Ashley told me, was the most genuine compliment she has ever received and one that lifted her spirits greatly by this friend's unselfish motivation.
The other thing I'd like to share is a quote I came across:
"The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away."
-Barbara Kingsolver
There were so many people who surrounded us during Maddie's illness and in the early months that followed. Many fell away quite quickly. Thank you to all who continue to reach out to us, your support continue to mean more than words can convey.
Have a happy Easter!
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Tuesday, March 22, 2005 12:36 AM CST It has been a difficult stretch of time, both emotionally and physically, so another delayed update. I thought I should attempt one today, for those of you who still check in.
I have REALLY been missing Maddie. This statement implies that there may be times when that's not the case, which is absurd- every second of every day I miss Maddie's physical presence- lately that void feels even more intense, if that's possible...
The kids and I have been sharing a horrible virus. I think it started with ChaChi. Keegan got slammed with it last Monday, and it's still hanging on. I joined him Friday night, landing in bed(for the most part) for the entire weekend and into Monday. Today I'm feeling a bit better, and Keegan is actually eating some- which is a HUGE improvement. Ashley hasn't officially "got it" yet, although faint symptoms keep popping up. I'm crossing my fingers that she'll dodge the full impact, and that the rest of us are well on our way to full recovery. We're due for a healthy go of it!
Ashley has been quite busy. She performed in the school musical, "Man of La Mancha", in a dancing role and the play just wrapped this past weekend. I took ChaChi and her friend, Brittany, to last Thursday's show and it was awesome! She has also been busy filling out scholarship applications and financial aid forms for colleges. She is, at this time, still undecided as to where she will be going in the fall, but I am very happy to say that she was accepted to all 3 universities to which she applied. Way to go, Ashley!!! She was fortunate to go with her spanish class to Costa Rica in February and had an unbelievable time. She has continued to work hard on her studies(no "senior slide" as of yet), and she seems to have found a peace(most of the time) dealing with so many different issues simultaneously. I am so proud of the person she has grown up to be. She loves her family and friends deeply, and shares her thoughts and experiences so openly with me. Her passion, insight, creativity, humor... truly makes my heart swell with pride. She is looking forward to a spring break trip in Playa del Carmen with several of her very good friends and a couple who agreed to go as chaperones. She'll be closing out her senior year with a dance trip to Boston. Yes, she has been given several wonderful opportunities, and yes, she really does appreciate them.
Charlotte continues on her very social path without missing a beat. She, too, has worked hard in school, but she also manages a social calendar that leaves my head spinning. Her friends fill my house frequently, which I love. They are all so fantastic with Keegan, and he loves them and their attention. She just attended her basketball banquet over the weekend and was named "Rookie of the Year", a well deserved honor for how hard she played. I was sorry I was just too sick to go and see her win her award! She has continued soccer training(indoors) all winter long, which has been the source of some aggravation, as she practices every Friday night(big inconvenience socially speaking), as well as Saturday and Sunday afternoons. With the arrival of spring, practices will change to being outdoors on weeknights, freeing up some of that beloved weekend social time... until games start up!!! The challenges of being a social butterfly AND a gifted athlete... She is looking forward to our spring break trip. I am taking Charlotte and Keegan, along with one of ChaChi's best friends, Preterra and Maddie's best friend, Liz, to Florida! We'll be there from April 3-10 visiting my friend, Susan(www.caringbridge.org/page/jakegriffin). For those of you who don't know, Susan is Jake Griffin's mom, the first other child we "met" through Caringbridge who had the same diagnosis as Maddie. Since meeting back in late June of 2003, she has become one of my very closest friends- and yet we have never physically spent any time together! She has graciously(crazily?) invited us to come and stay with her and her husband, Mark. Of course we never travel without a bonafide party, so the 5 of us will descend upon the Griffin household in less than 2 weeks! We plan on seeing my good friend, Jan, Harris' mom(www.caringbridge.org/fl/harris), who braved cold Minnesota's winter last January to celebrate Maddie's 14th birthday with her and us, too... and if schedules allow, we'll try to hook up with Kathy, David's mom, too!(www.caringbridge.org/fl/david) We are all so excited about this trip!!!
Keegan, aside from this past sick week, is fantastic. He is the sweetest little boy with a wonderful sense of humor. He is speaking more and more, and I had forgotten what an amazing time this is as a parent, watching your child develop so tangibly right in front of your eyes. He continues to be my best buddy and his sensitivity to me and my emotions is amazingly comforting. What a blessing he is in all of our lives. He continues to speak of his "Baboo" on a daily basis, and not a day goes by that he doesn't send many kisses and songs heavenward to her. I'm a bit warn out after a long week, but I must say that just looking at him makes my heart sing!
Before wrapping this up, I thought I'd share a couple of things that I have read recently that struck me as powerful. I was reading the post a husband made on his wife's caringbridge page thanking people after she had died. He wrote, "...You taught my family and me many important lessons over the past weeks and months- Mainly, don't wait to love! You sent that card, that email, that meal... It will never be forgotten..." What a wonderful lesson for us all to be reminded of. How fantastic it would be if we all tried to incorporate that thought into our daily lives, not just when faced with extreme circumstances. Ashley shared an experience she had over the weekend that demonstrates this so well. A friend came up to her, prompted by nothing but his sincere desire to share a beautiful observation that he had of her. I won't get into the details, but it, as Ashley told me, was the most genuine compliment she has ever received and one that lifted her spirits greatly by this friend's unselfish motivation. The other thing I'd like to share is a quote I came across:
"The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away."
-Barbara Kingsolver
There were so many people who surrounded us during Maddie's illness and in the early months that followed. Many fell away quite quickly. Thank you to all who continue to reach out to us, your support continue to mean more than words can convey.
Have a happy Easter!
With love,
julie-Ashley, Maddie, Charlotte and Keegan's mom
Wednesday, February 23, 2005 12:17 AM CST Words have been elusive, so another stretch without an update...
Just over one year ago, on Feb. 20th, Christie Blackwood died after a long, hard fought battle with leukemia. Christie, who was also 14 at the time of her death, was the cousin of Charly- one of Maddie's best friends. Maddie had followed Christie's fight even before her own diagnosis, and was so impressed by her courage and optimism. Christie was never far from Maddie's thoughts as she battled her own grim prognosis with a pontine glioma. Maddie lived with such positivity, generosity and grace, determined not to allow cancer to steal the joy, the complete love for life, that filled her heart and soul and radiated from every inch of her body.
Christie's death was a pivotal turning point for both Maddie and myself. Subtle symptoms of the tumor occupying space in Maddie's brain had returned. The reality that an earthly healing for Maddie was unlikely became more apparent. I felt overwhelmed, sad, frantic... helpless. Maddie felt... peaceful. I kid you not. The evening after attending Christie's memorial service- a beautiful celebration of the life of a beautiful girl- Maddie and I snuggled in bed together, as we did every night. I knew, instictively, that Maddie had much on her mind that she wanted to share, but that she felt conflicted, not wanting to upset me. I had to give her permission. I had to allow my daughter, my child who literally makes my heart sing, to talk with me about her own death, heaven... a conversation no mom should have to have with her own child, and yet a conversation for which I am profoundly grateful.
It was with the same boundless joy that Maddie embraced her life here on earth that she spoke of her life in heaven. Her peacefulness was not feigned. It, too, radiated with such intensity from every inch of her being... and her total trust only grew throughout her remaining 2 plus months here with us- helping to show me, and countless others, a way to better accept that, as she herself told me, "The outcome was either good or better." Good, if she was to be fully healed here on earth and could get on with her 14 year old life, and, obviously better if she was rewarded with total healing in heaven. She went on to say whichever the outcome, she knew it would be the right one for her- and because we love her as much as we do, we would have to believe it was the right one for us, too. We should rest assured in the knowledge that, in time, we will all be permanently reunited. I can't say that this acceptance comes easily- in fact, there are frequent occasions it seems to elude me completely- but if I allow myself space and time for quiet reflection, I can feel Maddie's peace.
Here we are, one year after this dramatic turning point, and so much has happened. On Feb. 9th, just a few short weeks ago, my very dear friend, Denny, died after a very long, hard fought battle with lymphoma, and, more recently, leukemia, too. Her darling daughters, Amanda and Allison, at only 13, are left to navigate a lifetime of experiences without their mother's physical presence. I pray they will always feel the enormous love and unbreakable bond they share with her- and that that, combined with the love and support of family and numerous friends will sustain them both throughout their lives.
So many new friends fighting their own battles have entered our lives... several have achieved the "better" outcome that Maddie spoke of, while others press on fighting for their earthly healing... all have touched our hearts and given us additional experiences and perspective to draw from. As individuals and as a family, we are changed forever. We miss Maddie desperately, but are truly reminded daily of the gift she continues to be in our lives. Thank you all, for the continued love and support you share with us- your friendship is also a gift.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Monday, February 14, 2005 1:37 PM CST To My Valentines-
I love you- Ashley; Maddie; Charlotte; Keegan-
Oh yes I do
I don't love anyone
Like I love you
When you're not near me
I'm blue (boo-hoo)
Oh- Ashley; Maddie; Charlotte; Keegan-
I LOVE YOU!!!!!!!! (oh yes I do!)
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Mom
Thursday, February 3, 2005 8:44 PM CST Hello Everyone!
It's Charlotte, updating for my VERY busy mommy! She has been down at the hospital a lot lately, supporting Denny and her two daughters, Amanda and Allison, two very dear friends of mine! I have been down there a couple times myself! Today, I left school early to go down there with Amanda and Allison to support them and let them know that I am here for them! We all had a good time, as best as we could under the situation, singing silly songs for Denny, eating beef jerky and drinking coke! Oh yeah! You can't forget jumping in the elevators! well...at least until a crabby lady came and said, "Oh, you guys scared me man! I am one of those people who are scared of elevators!" and then stormed off! Allison made a very good point after she left, that there are some very safe stairs that, that lady could take! I am asking you all to have them in your prayers! If you would like to, Denny, also, has a caring bridge site! www.caringbridge.org/mn/dennys
The rest of my family is doing okay! Keegan's vocabulary has sprouted a LOT lately and is VERY funny! After my basketball game today, my friend Britney came over to hang out, and my mommy said "Hey, will you guys blow bubbles for Keegan, while I get ready to go down to the hospital?" Of course we said YES because who wouldn't want to play with that cute little boy? Britney blew some bubbles for him and after a while she got bored of it and set them down. Keegan very cutely said to Britney "Oh, Brinee, you bwo moe bubbles fo teegy?" How could anyone say NO!?!? Ashley, has been very busy with all her homework...well when she feels like doing it! I have had basketball and soccer everyday in the week except for Saturday and this weekend we start Saturday training for soccer! I had a basketball game tonight, actually! We played REALLY hard but lost 17 to 26! Soccer and Basketball have taken over most of my time! But that doesn't stop my social life!
Well, I'm off to watch Napoleon Dynamite! "It's pretty much the best movie ever made!" :Gosh, Charlotte, no one could ever really know that!: It's flippin AWESOME! hehe! If you haven't seen it...well then you aren't as SWEET as me! hehe! I love you all to the moon and bacK!
~!*Charlotte Paguyo*!~ (Maddie's sister!)
Sunday, January 16, 2005 5:48 AM CST Celebrate Maddie's and Liz's birthdays with us today from 2-5PM at Maddie's house: 4441 Colfax Ave. S.
612-823-7933
Check out "past journal entries" for more specifics
Dear Maddie,
15 years ago, at ten minutes shy of 6:00AM, you, Madeline Taylor Paguyo, were born, and to quote you, "The world started to turn." You're not too far off... I'm going to rewind time two years and say that when your big sister, Ashley, made me a mother for the first time, my world started to turn- and then along you came and that world grew bigger and turned faster with each shared experience- and then, bigger and faster still with ChaChi's arrival- and, let's face it, by the time Keegan came it had grown so large and was spinning so fast, it spun right off its' axis!
There is NOTHING that brings me greater joy, satisfaction and awe than being your mom. When I try to "put my finger on it," I can't, exactly. It is EVERYTHING: happy or sad, quiet or loud, big or small... and, in all honesty, there are no "small" moments being mom to the 4 of you.
The "ta-dah" moments are fun... parties, vacations... but when I search my mind for what is truly special, I flip through an unending photo album of snapshots of you all, at varying ages... singing silly songs; putting on plays in the living room; arts and crafts- and school projects, done so creatively and with such tenacity- on the dining room table; snuggling on the floor in the family room or in my big bed, watching a show- you and your sisters giggling shamelessly when you tricked me into watching something scary- and you, through that sly grin begging me not to leave and trying to comfort me by reminding me "it's not real, only a movie..."; boatloads of friends gathering at our house to play, dance, eat... laugh; I hear you playing the keyboard, belting out a song; I see your gorgeous face... those deep, beautiful, storytelling eyes... your long, delicate fingers and your light-up-the-room(and my heart) smile... I could go on and on...
And, each picture, each memory, each warm feeling, brings a smile... and often a flood of tears. You see Maddie Mo, as I have come to understand, my grief missing your physical presence reflects the gigantic love we share. I liken it to a well worn path through the forest to a wonderful, familiar, happy place(maybe a cabin, a favorite spot on the beach, a path worn up a hill to a peaceful place with a spectacular view...) Just as each of you- your unique and incredible spirits, your individual talents and amazing gifts you share so freely... your love, is etched deeply and permanently in my mind, my heart, my soul- so, too, is my grief missing your physical presence.
So, what am I to do? Continue on that well worn path, revisiting all our happy memories, while creating new ones,
remembering to embrace the many lessons you so gracefully taught and continue to teach, celebrating you and your siblings and your beautiful lives, and rejoicing in the undying love that we share and your continued presence in our daily lives as a result of that unbreakable bond.
Today we celebrate you, Madeline Taylor Paguyo- you have touched countless lives and taught many awesome lessons simply by being you and living with such quiet strength and courage, giving so unselfishly, trusting so unconditionally, loving so gigantically, and infusing just enough of that incredible humor of yours along the way to "keep it real." When I grow up, I want to be just like you!
To quote a VERY famous author, "You are the Bang in my kok, the jump in my step, the beat in my heart- I love you more than you could imagine- and I wanted you to know that!"
HAPPY 15th BIRTHDAY, MADDIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I LOVE YOU, I LOVE YOU, I LOVE YOU!!!!!!!!!!!!!!!!!!!!!!!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Mom
Sunday, January 9, 2005 4:19 PM CST *****It's a PARTY and you're ALL invited!!!****
Next Sunday, January 16th, is Maddie's birthay. Tuesday, the 18th, is her best friend, Liz's birthday. For several years, they have held a joint celebration, and we're celebrating #15 together, too!
Here's the deal...
The party will be at Maddie's house,
4441 Colfax Ave. S. Mpls., MN. 55419
from 2-5 PM.
In true Maddie fashion, we'll eat, sing, dance and celebrate the amazing friendship Maddie and Liz share. I know it's polite to say, "No gifts", but we have something special in mind...
This is a difficult year for Liz without Maddie's physical presence and she deserves to be remembered.
In memory of Maddie, we are asking that you bring a gift for any age child- infant to teen, boy or girl- and we will be donating them to Mpls. Children's Hospital, "From Maddie."
Please email your RSVP to: juliedornisch@yahoo.com
HOPE TO SEE YOU NEXT SUNDAY, JANUARY 16TH!!!!!!!!!!!!!!!!!!
Wednesday, December 29, 2004 7:50 PM CST **Added January 6th**
Maddie Mo,
8 months today, and missing you more than ever!!!
WE LOVE YOU, MADDIE!!!!!!!!!!!!!!!!
As the New Year approaches, I can't help but reflect over the last 2 years and the impact our experiences have had on how we face 2005.
We welcomed 2003 with great enthusiasm. With Keegan just over one month old, we, as a family, were beginning to experience together all those wonderful "firsts". Our sorority now permanently infiltrated, we embraced our sweet "Brother Bear" with all the wonder, innocence and brightness that new life brings. April 28th, our lives were drastically rerouted with Maddie's diagnosis. Her conventional prognosis grim, we hit a low the depths of which I had never known. Our wonderful extended family and amazing friends rallied their support. We were quickly directed to some alternative treatments with which came renewed hope. With Maddie's unwaivering grace, strength and quiet courage as our compass, we pitched our despair and consciously decided to embrace life, to enjoy each other and our time together. Reminded boldly of the fragility of life and its' lack of guarantees, we found frequent occasion to celebrate, and celebrate we did with countless numbers of family and friends. Our familial bonds grew even deeper, our established friendships too, and newfound relationships blossomed rapidly.
Ringing in 2004 was a family affair. Though small in size, the celebration was gigantic in spirit. Maddie's continued good health, our focus on optimistic living and our immense love for each other was cause enough to celebrate. Six short days later, subtle symptoms recurred and our blind faith and hope were again interrupted. My internal anxiety heightened, outwardly I attempted to appear calm and positive. Maddie was not fooled by my amateur acting skills, and her gift to teach elevated to superhuman-like heights. She found countless occasions to remind me that "Whatever happens, happens. Whatever doesn't, doesn't." "No need to stress, as it is out of our control"... "The outcome is either good or better..." "We carry each other firmly in our hearts... we can never be separated"... My unbelievable daughter. Her heart so filled with unconditional love and trust that God has it all under control, and that we should simply live every second we are afforded. Our hope for an earthly healing now needed to share space with our determination to live every second that we were granted fully. Her health declining slowly, we lived, rather than focusing on dying. Driving lessons, a trip to Vegas, busting sisters and friends out of school to play with us... scrapbooking, audiotaping our "story", eating ANYTHING we wanted, as often as we wanted... talking about everything, laughing, crying... we lived, and I am so grateful that we were given that time as a family to do so. Maddie's death in May created a physical void so great no words could adequately describe it. Her life and the lessons she continues to teach leaves a unquantifiable legacy. The remainder of 2004 has been about transition. Trying to move on as a family without the daily presence of our "glue". Ashley and ChaChi, learning to be sisters without their steel bridge- Maddie. Keegan, finding ways to include "Baboo" in his daily life- whether through photos, song or loving air kisses blown heavenward. Me, as a mom, so distraught over my incredible loss, and yet, truly aware of the amazing blessings Maddie brought to my life- blessings that will remain with me for the rest of my life. And, although this journal has been most frequently used to highlight Maddie's inspiring life, it cannot go unsaid that the experiences of the past 2 years have also allowed the true gifts that Ashley, Charlotte and Keegan possess to magnify immensely, making me more aware of, and more grateful for, the beauty all 4 of my children bring to my life. The depth of our grief is simply a reflection of the enormity of our love, and our love is GIGANTIC.
Now, with 2005 fast approaching, we look forward with cautious optimism. Our lives forever changed by Maddie's life and death, we embrace her simple lessons and vow to honor her by living fully and loving gigantically. A year of possibilities awaits... Ashley will graduate from high school and begin college... ChaChi will complete 7th grade and take the helm as the "biggest" when she begins 8th grade... Keegan's world grows larger daily as he and his vocabulary expand in size... I am resolved to create Maddie's foundation and allow my desire to help others on similar journeys to take flight... I am certain that Maddie will be right there, holding each of our hands and giving us the courage we need to continue here on this journey until we are all permanently reunited.
We wish all of you the Happiest of New Years, and we thank you sincerely for the love and support you continue to provide.
With love,
Julie- Ashley, Maddie, ChaChi and Keegan's mom
Please continue to check on my friend, Denny, as she continues on her very difficult road to recovery. www.caringbridge.org/mn/dennys
Wednesday, December 29, 2004 7:50 PM CST As the New Year approaches, I can't help but reflect over the last 2 years and the impact our experiences have had on how we face 2005.
We welcomed 2003 with great enthusiasm. With Keegan just over one month old, we, as a family, were beginning to experience together all those wonderful "firsts". Our sorority now permanently infiltrated, we embraced our sweet "Brother Bear" with all the wonder, innocence and brightness that new life brings. April 28th, our lives were drastically rerouted with Maddie's diagnosis. Her conventional prognosis grim, we hit a low the depths of which I had never known. Our wonderful extended family and amazing friends rallied their support. We were quickly directed to some alternative treatments with which came renewed hope. With Maddie's unwaivering grace, strength and quiet courage as our compass, we pitched our despair and consciously decided to embrace life, to enjoy each other and our time together. Reminded boldly of the fragility of life and its' lack of quarantees, we found frequent occasion to celebrate, and celebrate we did with countless numbers of family and friends. Our familial bonds grew even deeper, our established friendships too, and newfound relationships blossomed rapidly.
Ringing in 2004 was a family affair. Though small in size, the celebration was gigantic in spirit. Maddie's continued good health, our focus on optimistic living and our immense love for each other was cause enough to celebrate. Six short days later, subtle symptoms recurred and our blind faith and hope were again interrupted. My internal anxiety heightened, outwardly I attempted to appear calm and positive. Maddie was not fooled by my amateur acting skills, and her gift to teach elevated to unhuman-like heights. She found countless occasions to remind me that "Whatever happens, happens. Whatever doesn't, doesn't." "No need to stress, as it is out of our control"... "The outcome is either good or better..." "We carry each other firmly in our hearts... we can never be separated"... My unbelievable daughter. Her heart so filled with unconditional love and trust that God has it all under control, and that we should simply live every second we are afforded. Our hope for an earthly healing now needed to share space with our dtermination to live every second that we were granted fully. Her health declining slowly, we lived, rather than focusing on dying. Driving lessons, a trip to Vegas, busting sisters and friends out of school to play with us... scrapbooking, audiotaping our "story", eating ANYTHING we wanted, as often as we wanted... talking about everything, laughing, crying... we lived, and I am so grateful that we were given that time as a family to do so. Maddie's death in May created a physical void so great no words could adequately describe it. Her life and the lessons she continues to teach leaves a unquantifiable legacy. The remainder of 2004 has been about transition. Trying to move on as a family without the daily presence of our "glue". Ashley and ChaChi, learning to be sisters without their steel bridge- Maddie. Keegan, finding ways to include "Baboo" in his daily life- whether through photos, song or loving air kisses blown heavenward. Me, as a mom, so distraught over my incredible loss, and yet, truly aware of the amazing blessings Maddie brought to my life- blessings that will remain with me for the rest of my life. And, although this journal has been most frequently used to highlight Maddie's inspiring life, it cannot go unsaid that the experiences of the past 2 years have also allowed the true gifts that Ashley, Charlotte and Keegan possess to magnify immensely, making me more aware of, and more grateful for, the beauty all 4 of my children bring to my life. The depth of our grief is simply a reflection of the enormity of our love, and our love is GIGANTIC.
Now, with 2005 fast approaching, we look forward with cautious optimism. Our lives forever changed by Maddie's life and death, we embrace her simple lessons and vow to honor her by living fully and loving gigantically. A year of possibilities awaits... Ashley will graduate from high school and begin college... ChaChi will complete 7th grade and take the helm as the "biggest" when she begins 8th grade... Keegan's world grows larger daily as he and his vocabulary expand in size... I am resolved to create Maddie's foundation and allow my desire to help others on similar journeys to take flight... I am certain that Maddie will be right there, holding each of our hands and giving us the courage we need to continue here on this journey until we are all permanently reunited.
We wish all of you the Happiest of New Years, and we thank you sincerely for the love and support you continue to provide.
With love,
Julie- Ashley, Maddie, ChaChi and Keegan's mom
Please continue to check on my friend, Denny, as she continues on her very difficult road to recovery. www.caringbridge.org/mn/dennys
Tuesday, December 14, 2004 9:29 AM CST Hello,
10 short days until Christmas Eve. This year has such a different feel from any other... sadness, missing Maddie more than any words could convey, anxiety... combined with such love for Ashley, Charlotte, Keegan and, of course, Maddie... wanting to celebrate the season and our incredible bond with one another, but not really knowing what that word, "celebrate", really means right now...
I often go back and read Maddie's journal entries. Last year, about this time, she wrote:
"I can hardly wait for Christmas. Family, friends, food, gifts! Yeah! This year though, it's not about the presents, it's about the love and the laughter that we are blessed to share with our wonderful family and amazing friends. Thanks so much to all of you for making this holiday season truly special!"
Last year was such an amazing celebration. Not just the holidays, but every moment from shortly after Maddie's diagnosis all the way through to her memorial service- and beyond. We embraced life and learned to appreciate the "little things" as well as the "big" ones. Long before Maddie's illness we were a family that loved to celebrate- always- but with her diagnosis and grim prognosis came a greater resolve to truly enjoy our time together and to include anyone who wanted to join us on our journey- thank you to everyone who participated in any way- you may never completely understand how much all those parties and gatherings meant to Maddie, but I do.
As hard as it is to imagine this Christmas without Maddie physically here to drive the festivities, I have a few surprises to make sure her presence is well felt by all. Obviously, I can't reveal them right now, but it is these special ideas that have come to me that I am most excited about. One idea I will share is the stocking "dilema." It never occured to me that I wouldn't hang Maddie's stocking along with the other kids'. I have spoken to many other parents who have lost children who have expressed concern over what to do... hang it, leaving it empty?... don't hang this child's?... don't hang any?... fill it?... My idea came quite easily. All 4 stockings will hang, as always. In Maddie's, I will place a very special gift, "from Maddie", to each of her siblings- I have really had a wonderful time coming up with what Maddie would want to give to each of them. This new tradition is one that I will look forward to each year.
The kids, like me, are struggling missing Maddie. It's so hard every day, but the additional expectations and stresses that this time of year brings heightens our feelings. We are very much together dealing with the range of emotions, and I thank God for the strong bond that we all share.
My friend, Denny, is struggling through some to-be-expected side effects of the bone marrow transplant she received right after Thanksgiving. Although they are a necessary evil in her recovery, it is hard to see her fighting so hard to get better. I know she, along with her beautiful daughters, Amanda and Allison, would really appreciate your prayers and support. A new caringbridge page has been set up for her: caringbridge.org/mn/dennys.
In closing, I would like to share another quote I came across. These words ring so true of my Maddie, and could serve as a positive reminder to us all:
"When you were born, you cried and the world rejoiced. Live your life so that when you die, the world cries and you rejoice."
-Cherokee Expression
Maddie Mo, through my tears missing you, I do rejoice in the knowledge that you are well and happy. I miss you and await the day that we are all permanently reunited.
Thank you all for your continued love and support.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Saturday, December 4, 2004 9:35 AM CST Another day. They do keep coming... Every year it startles me how quickly the time goes from Thanksgiving through the New Year. This year I'm caught in a time warp... picture something like clocks whisking over my head, then slamming into a cement wall. The kids and I LOVE this time of year. I've always loaded them into the car, driving endlessly looking at the beautiful holiday lights diplayed. Singing Christmas carols at the top of our lungs, over and over. Decorating the tree (OK, that task is only fun for awhile and then it becomes a bit of a burden- we put HUNDREDS of ornaments on our tree- but it is BEAUTIFUL). Talking anxiously about the surprises we would buy or make for gifts- always with such extreme thought about what would be "perfect" for the person who was to receive it. The family Christmas photo to be included in the cards that each one of us would sign by hand...
This year is different. Thanksgiving was very hard for me. I stayed in bed most of the day. My sisters took care of preparing the meal here at the house, and Rich, Keegan's dad, had offered a quiet escape to his house where he also prepared a meal for us. I appreciate everyone's sincere attempt to help us through a difficult day, but nothing felt "right". The kids came in and out of my room all day to snuggle in bed with me. We talked about last year. Maddie was so alive and seemingly so healthy. She loved Thanksgiving- not just the wonderful food,(but I bet she would admit to that meal, with all the trimmings, being her very favorite)- but she also truly loved the wonderful, uncomplicated family time that this holiday allows for. No presents, just truly giving thanks for all we have- most importantly each other. It also was Keegan's 1st birthday. So much to celebrate. To sit at the table having her seat vacant was just too much for me to handle this year, and yet I know that she wants us to keep celebrating life- to keep celebrating her and each other. I'm trying to imagine Christmas, New Years and her birthday in January joyfully. I will try to allow for a balance of joy and the immense sadness that we feel missing our incredibly joyful Maddie.
"This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good. What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever, in its place is something you have left behind... let it be something good."
Author Unknown
Maddie could have written these words. She lived them. We should all do the same. I will try- my children and I deserve no less.
The kids are doing OK. One week ago, Nov. 27, was Keegan's 2nd birthday, and we had a wonderful party. He doesn't know many two year olds, so instead his guestlist included family and Ashley, Maddie and Charlotte's friends- all who adore him and were only too happy to attend his celebration. He had so much fun. We all did. He exudes such happiness and love for all of us. He is a super active child- can be a tad "naughty" at times- but he has the warmest, sweetest heart you can imagine.
ChaChi continues her balancing act of school, athletics and a VERY healthy dose of socializing. Her schedule makes me dizzy, but I am so happy that she seems to be doing so well. She is beautiful, confident and extremely funny.
Ashley is so busy keeping up with schoolwork. Her classes are advanced, and the focus and discipline it takes to keep up with it all is daunting. I know it is difficult, as there are days that my far more simple tasks go undone. I am so proud of her. During what should be the most carefree time of her life, she is dealing with so much with grace and compassion for others. She, along with her siblings, is my best friend. We can, and do, talk about anything. As I have said over and over, I am one very blessed mom.
Please keep a very dear friend of mine, Denny, in your thoughts and prayers. She is battling more than one cancer simultaneously, and yesterday she received the bone marrow transplant that she desperately needed. She has two beautiful girls who are ChaChi's age. Amanda, Allison and Chach have been great friends since kindergarten and their family is so very dear to us.
We continue to appreciate the love and support we receive from all of you very much.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's mom
Friday, November 19, 2004 9:39 AM CST Hello everyone,
Another stretch of time without an update. Some days the words flow freely, others I feel I don't have much to say. Thanksgiving is less than one week away, thrusting us full tilt into the bustling holiday season. This will be a much different experience than in years past. My children LOVE the holidays- sure they enjoy the fantastic food and the excitement that comes along with receiving presents- but even more, they are so happy spending time together- decorating, signing Christmas cards, the annual holiday photo, "baking"(usually cut-and-bakes,lol), shopping for, or making the perfect gifts for each other, singing every carol we know hundreds of times, the "Christmas Show" my children put on with their cousins on Christmas Eve... it's difficult to imagine doing it all without Maddie physically here.
My friend, Melanie, has come and gone already. I met Mel through Caringbridge. Her wonderful son, Isaac, was diagnosed with the same type of brain tumor as Maddie, and we followed each others stories closely, offering each other support along the way. We met as a result of unfortunate circumstances, but our friendship has grown to be so comfortable and loving. Mel, her husband Gary and their son, Lucas, planned a Thanksgiving vacation to London, where Gary's older daughter lives. Melanie left a few days ahead of "the boys", detouring through Minneapolis to spend time with me. We had a wonderful time together, and I miss her already. Thanks, Mel.
(www.caringbridge.org/wa/isaac)
The kids are doing pretty well. Ashley is busy with school, college applications(she's already been accepted at the UofM), working on various committees at school... She's planning on going on the Spanish class trip to Costa Rica in February and we are trying to decide on a Spring Break vacation as well. Charlotte is my social butterfly. This girl fills EVERY free moment with one activity or another. In addition to parties, sleepovers, shopping and movies, she continues her soccer training and will be trying out for her school's basketball team. She is keeping up well with her school work, too. Keegan is my buddy. I love spending every day with him- watching him grow and develop is such a joy. He is a sweet natured child, showering his mommy with lots of hugs and kisses. Now if I could just get the concept across that he is only supposed to draw on paper... Next Saturday, Nov. 27, is his 2nd birthday. Two years. So much has happened...
With Thanksgiving almost here, I thought I'd share something Maddie wrote in her Caringbridge journal last year. Again, her insight and her words are far more powerful than anything I could write.
"As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call you get from your spouse every day. For all the loved ones that you hold close to your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have shown me how to be thankful, and what to be thankful for. So, this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same....
Thanks-and I mean THANKS,
Maddie"
"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."
-Martin Luther King, Jr.
I am in awe of where Maddie stood at this time of great challenge. Such courage, grace and strength. Such an unselfish outporing of love. She truly "got it". Her lessons are far reaching and will guide me throughout my life. When I am feeling sad or angry, I need to look no further than my own heart to hear her loving words.
I am so thankful for the many gifts in my life- the biggest being my incredible children, Ashley, Maddie, Charlotte and Keegan.
Thanks-and I mean THANKS,
Julie
Friday, November 19, 2004 9:39 AM CST Hello everyone,
Another stretch of time without an update. Some days the words flow freely, others I feel I don't have much to say. Thanksgiving is less than one week away, thrusting us full tilt into the bustling holiday season. This will be a much different experience than in years past. My children LOVE the holidays- sure they enjoy the fantastic food and the excitement that comes along with receiving presents- but even more, they are so happy spending time together- decorating, signing Christmas cards, the annual holiday photo, "baking"(usually cut-and-bakes,lol), shopping for, or making the perfect gifts for each other, singing every carol we know hundreds of times, the "Christmas Show" my children put on with their cousins on Christmas Eve... it's difficult to imagine doing it all without Maddie physically here.
My friend, Melanie, has come and gone already. I met Mel through Caringbridge. Her wonderful son, Isaac, was diagnosed with the same type of brain tumor as Maddie, and we followed each others stories closely, offering each other support along the way. We met as a result of unfortunate circumstances, but our friendship has grown to be so comfortable and loving. Mel, her husband Gary and their son, Lucas, planned a Thanksgiving vacation to London, where Gary's older daughter lives. Melanie left a few days ahead of "the boys", detouring through Minneapolis to spend time with me. We had a wonderful time together, and I miss her already. Thanks, Mel.
(www.caringbridge.org/wa/isaac)
The kids are doing pretty well. Ashley is busy with school, college applications(she's already been accepted at the UofM), working on various committees at school... She's planning on going on the Spanish class trip to Costa Rica in February and we are trying to decide on a Spring Break vacation as well. Charlotte is my social butterfly. This girl fills EVERY free moment with one activity or another. In addition to parties, sleepovers, shopping and movies, she continues her soccer training and will be trying out for her school's basketball team. She is keeping up well with her school work, too. Keegan is my buddy. I love spending every day with him- watching him grow and develop is such a joy. He is a sweet natured child, showering his mommy with lots of hugs and kisses. Now if I could just get the concept across that he is only supposed to draw on paper... Next Saturday, Nov. 27, is his 2nd birthday. Two years. So much has happened...
With Thanksgiving almost here, I thought I'd share something Maddie wrote in her Caringbridge journal last year. Again, her insight and her words are far more powerful than anything I could write.
"As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call you get from your spouse every day. For all the loved ones that you hold close to your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have shown me how to be thankful, and what to be thankful for. So, this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same....
Thanks-and I mean THANKS,
Maddie"
"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."
-Martin Luther King, Jr.
I am in awe of where Maddie stood at this time of great challenge. Such courage, grace and strength. Such an unselfish outporing of love. She truly "got it". Her lessons are far reaching and will guide me throughout my life. When I am feeling sad or angry, I need to look no further than my own heart to hear her loving words.
I am so thankful for the many gifts in my life- the biggest being my incredible children, Ashley, Maddie, Charlotte and Keegan.
Thanks-and I mean THANKS,
Julie
Sunday, November 7, 2004 8:40 AM CST Hello to all,
Yesterday we hit the 6 month mark since, in Maddie's own words, she "Won the battle", and left us physically to be in heaven, a wonderful place we are left to imagine until the day we each join her. My faith and belief in this concept grew incredibly during Maddie's illness. It was a gift to see things through Maddie's accepting and peaceful eyes. I clearly remember a difficult, yet inspiring, conversation I had with Maddie shortly after attending her friend's memorial service- just over 2 months before Maddie's death. Maddie had watched Christy's own very courageous, very positive and confident battle against leukemia for almost 1 1/2 years. She loved Christy's upbeat attitude and love for life, for her family and for her friends. The service was absolutely beautiful- packed with personal touches and very much a celebration of a life well lived. Later that evening, as Maddie and I were snuggling together in her bed, I commented on the amazing tribute to Christy, instictively knowing that Maddie wanted to talk. Her beautiful, brown M&M eyes lit up, a smile from ear to ear crossing her face. She told me then that if I ever needed to plan a service for her, she wanted it to be just like Christy's- upbeat, happy, celebratory. I shared with her my sadness over the idea that she may leave me, but the peace in knowing that Christy would be there with her. Maddie then shared with me her plans- with Christy, they would run a "Club Kid" for all the younger children she had grown to love so dearly. It would be so much fun, all of them together, blissfully healthy. We assured each other, as we did on many occasions, that we would never truly be separated, as our beings are literally permanently entwined. Seeing the absolute certainty that Maddie embraced eternal life with gave me a wonderful peace for her. As I continue to say and believe, Maddie is OK- actually, more than OK- she is perfect. It is for those of us left here that I am sad. Missing Maddie is incredibly painful, even with the knowledge she gave me about her well-being.
I picked up a wonderful book entitled, "Forever Ours", by Janis Amatuzio. It is a lovely compilation of stories she has collected since med school, through today in her work as coroner for Anoka County in Minnesota. This collection of stories reveals a beautiful glimpse of the transition between earthly life and the life beyond. It is a very quick read, and left me contemplating some of our personal experiences before and since Maddie's death that could easily be additional chapters for this book. I'd like to share a quotation noted at the end of the book:
And if I go
While you're still here...
Know that I live on
Vibrating to a different measure
Behind a veil you cannot see through.
You will not see me,
so you must have faith.
I will wait for the time when we can
soar together again
both aware of each other.
Until then, live life to its fullest!
When you need me, just whisper
my name in your heart...
I will be there.
-Colleen Cora Hitchcock
6 months. Just over 1 1/2 years since that dreadful day Maddie was diagnosed. So many emotions and stories, happy and sad, etched page by page vividly in my mind. The one thought that rises above all is how dearly Maddie loved life, her family and her many friends- how purely she trusted and how unselfishly she gave of herself. I have not been so perfect on this journey. Some already fragile relationships have become casualties under the weight of my overwhelming grief- other relationships have been immeasurably strengthened and many new people have entered my life who I now count among my closest friends. There is no script to work from, so I "write" it as I go. Thank you, again, to all of you who continue to stand firmly by our sides- for some of you closest to me, it can't always be easy, making your loving support even more meaningful.
Before closing today, there are 3 very dear friends of mine who I would ask you to keep in your thoughts and prayers. First, I will mention Harris' mom, Jan. Jan and her husband, Hank, just celebrated the one year anniversary of Harris' journey to heaven. She has just updated Harris' site with a beautiful story, and I am sure she would appreciate your stopping by to lend support. www.caringbridge.org/fl/harris
Next I want to direct you to visit my friends, Susan and Mark. Their "Jakey Bear" died a month before Maddie from the same type of tumor. November 16 is their sweet boy's birthday, and I know this is a month filled with painful milestones for them. www.caringbridge.org/page/jakegriffin
Isaac's mom, Melanie, will be here, at my home, in one short week. She arrives one day after Isaac's birthday- again, I encourage you to drop a note of support in Isaac's questbook for Mel, her husband, Gary, and Isaac's little brother, Lucas.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's lucky mom
Sunday, November 7, 2004 8:40 AM CST Hello to all,
Yesterday we hit the 6 month mark since, in Maddie's own words, she "Won the battle", and left us physically to be in heaven, a wonderful place we are left to imagine until the day we each join her. My faith and belief in this concept grew incredibly during Maddie's illness. It was a gift to see things through Maddie's accepting and peaceful eyes. I clearly remember a difficult, yet inspiring, conversation I had with Maddie shortly after attending her friend's memorial service- just over 2 months before Maddie's death. Maddie had watched Christy's own very courageous, very positive and confident battle against leukemia for almost 1 1/2 years. She loved Christy's upbeat attitude and love for life, for her family and for her friends. The service was absolutely beautiful- packed with personal touches and very much a celebration of a life well lived. Later that evening, as Maddie and I were snuggling together in her bed, I commented on the amazing tribute to Christy, instictively knowing that Maddie wanted to talk. Her beautiful, brown M&M eyes lit up, a smile from ear to ear crossing her face. She told me then that if I ever needed to plan a service for her, she wanted it to be just like Christy's- upbeat, happy, celebratory. I shared with her my sadness over the idea that she may leave me, but the peace in knowing that Christy would be there with her. Maddie then shared with me her plans- with Christy, they would run a "Club Kid" for all the younger children she had grown to love so dearly. It would be so much fun, all of them together, blissfully healthy. We assured each other, as we did on many occasions, that we would never truly be separated, as our beings are literally permanently entwined. Seeing the absolute certainty that Maddie embraced eternal life with gave me a wonderful peace for her. As I continue to say and believe, Maddie is OK- actually, more than OK- she is perfect. It is for those of us left here that I am sad. Missing Maddie is incredibly painful, even with the knowledge she gave me about her well-being.
I picked up a wonderful book entitled, "Forever Ours", by Janis Amatuzio. It is a wonderful compilation of stories she has collected since med school, through today in her work as coroner for Anoka County in Minnesota. This collection of stories reveals a beautiful glimpse of the transition between earthly life and the life beyond. It is a very quick read, and left me contemplating some of our personal experiences before and since Maddie's death that could easily be additional chapters for this book. I'd like to share a quotation noted at the end of the book:
And if I go
While you're still here...
Know that I live on
Vibrating to a different measure
Behind a veil you cannot see through.
You will not see me,
so you must have faith.
I will wait for the time when we can
soar together again
both aware of each other.
Until then, live life to its fullest!
When you need me, just whisper
my name in your heart...
I will be there.
-Colleen Cora Hitchcock
6 months. Just over 1 1/2 years since that dreadful day Maddie was diagnosed. So many emotions and stories, happy and sad, etched page by page vividly in my mind. The one thought that rises above all is how dearly Maddie loved life, her family and her many friends- how purely she trusted and how unselfishly she gave of herself. I have not been so perfect on this journey. Some already fragile relationships have become casualties under the weight of my overwhelming grief- other reationships have been immeasurably strengthened and many new people have entered my life who I now count among my closest friends. There is no script to work from, so I "write" it as I go. Thank you, again, to all of you who continue to stand firmly by our sides- for some of you closest to me, it can't always be easy, making your loving support even more meaningful.
Before closing today, there are 3 very dear friends of mine who I would ask you to keep in your thoughts and prayers. First, I will mention Harris' mom, Jan. Jan and her husband, Hank, just celebrated the one year anniversary of Harris' journey to heaven. She has just updated Harris' site with a beautiful story, and I am sure she would appreciate your stopping by to lend support. www.caringbridge.org/fl/harris
Next I want to direct you to visit my friends, Susan and Mark. Their "Jakey Bear" died a month before Maddie from the same type of tumor. November 16 is their sweet boy's birthday, and I know this is a month filled with painful milestones for them. www.caringbridge.org/page/jakegriffin
Isaac's mom, Melanie, will be here, at my home, in one short week. She arrives one day after Isaac's birthday- again, I encourage you to drop a note of support in Isaac's questbook for Mel, her husband, Gary, and Isaac's little brother, Lucas.
With love,
Julie-Ashley, Maddie, Charlotte and Keegan's lucky mom
Monday, November 1, 2004 11:54 AM CST
Hello,
Today I begin with the news that our dear friend, Cheyenne, died early Saturday morning. Cheyenne was diagnosed with the same type of tumor as Maddie in July of last year. Maddie was a great source of encouragement for her, sharing both her own practical knowledge, as well as uplifting support. She loved and cared for her in a very special way, and I know Cheyenne had a strong connection to Maddie, as well. I have grown quite fond of the entire Fiveash family, and I am so sorry for their loss. I cannot put into words what I know all too well they are going through. This new journey, the one where they are left to navigate through life without the physical presence of their "Pumpkin", or "Little Stink", as her father, Roy, affectionately calls her, is by far the hardest thing I have ever had to do in my lifetime. I pray for peace and guidance for her loving family and friends. Please join me in sending her family- Roy and Donna, sister, Diana, and brothers, Christopher and Michael- your support. www.caringbridge.org/tx/cheyenne5
In 5 short days my family will hit the 6 month mark since Maddie won her battle and moved on to eternally blissful life. 6 months. A lifetime since I last kissed her, heard her sweet laugh and wise, loving words... and yet a blink of an eye as far as our grieving process goes. We miss her so very much, but find comfort in the abundant gifts she has shared, and continues to share with us. I thank each and everyone of you who has stood close by our sides- it is our love for each other, combined with that from all of you, that will help us continue forward.
The holidays bring quite a few emotions out... last year, the kids ALL dressed as Mariachis and took Keegan out for his very first Halloween. Maddie was thrilled, and my little Mexican band was absolutely adorable. This year, ChaChi came up with a wonderful idea... they would all dress as butterflies. For those of you who don't know, shortly after Maddie's death Keegan identified a beautiful butterfly as Maddie. Being just 1 1/2, this came to him all alone- and we have had a few very extraordinary experiences with butterflies as a family since that first one. Keegan without hesitation has accepted that this is the life form Maddie now occupies, and I have to believe that there is some significance to his pure and uncluttered ability to see her so beautiful and so alive. So, Ashley(17), ChaChi(12) and little Keegan(along with a few of ChaChi's friends who couldn't resist participating) put on their beautiful wings and went out as "Baboo"- Keegan's name for Maddie. It was a wonderful way to include and celebrate Maddie, and Keegan had a blast collecting a bucket full of treats.(he actually dumped the mound of candy beside him and slept with it in his bed!) This capped off another packed weekend- Charlotte had a Halloween party on Friday that 55-60 kids attended, and believe it or not, it was a lot of fun, even for ME!!! Thanks to Ashley and Maddie's best friends, Liz and Austin, for hanging out with me and helping!(Ash and Liz-your karaoke performances were awesome!)
In two weeks, Isaac's mom, Melanie is coming for a visit. Isaac also had the same diagnosis as Maddie, and died a short while after her. Melanie and I have developed a very comfortable friendship and I can't wait to spend time with her. Ashley jokingly refers to Mel, Susan and some of the other parents as my "internet friends", but I have to say the bond I share with them is indescribable, and one I hope those of you reading this who can't relate, never will be able to.
Ash and Chach are finishing their first quarter of school this week- lots of projects due and tests to take- and then Friday off to breathe. They continue to manage reasonably well, although we all have our moments. Keegan is pure joy and the positive focus is so helpful for us all.
We appreciate your continued love and support- be well, and remember, VOTE tomorrow!
With love,
Julie
Monday, October 18, 2004 11:50 AM CDT
Hi,
It's been awhile since we last updated...
I thought I'd share another "Maddie story" today.
My younger sister, Tricia, has a very good friend, Bridget, who I have known since they were in grade school. Bridget received a "prayer box necklace"- one of those where the pendant opens and you are supposed to tuck a prayer inside- and at some point in the year post diagnosis she asked Maddie to please write a prayer for her to place inside. Without reading it, Bridget wore that necklace with Maddie's prayer safely secured.
The evening Maddie died, Tricia phoned her very dear friend to tell her the news. Of course, Bridget headed right over to be with her. Some time that evening, she remembered Maddie's prayer, which she had worn daily around her neck. For the first time since it had been written, she took it out and read it. There, on this incredibly small, tightly rolled piece of paper, in Maddie's handwriting, said, "I pray the health and happiness of those around me is restored." Amazing... both in life and in death, Maddie's love and concern for her family and friends is absolutely gigantic and unfailing. (Thanks to Bridget, who gave the original prayer to me to keep.)
I can't say that this prayer has been realized- I can say that we are working toward it's realization. I can also say that I know there isn't a luckier mother than myself. The enormity of my love for my children cannot be quantified. The ability my children have to demonstrate their love for me and each other is rewarding beyond words. We are profoundly sad for ourselves that Maddie is not physically here with us- at the same time, there is not a doubt in my mind that Maddie is well and in a wonderful place that we are left only to imagine for now.
Please continue to check on our friend, Cheyenne, as she is experiencing many diffficult effects from the same tumor Maddie was diagnosed with.(www.caringbridge.org/tx/cheyenne5) She and her family will appreciate your prayers and encouragement.
Thank you for your continued love and support.
With love,
Julie
(Check out the new photo of ChaChi and Keegan on the photo page!)
Wednesday, October 6, 2004 12:24 AM CDT Maddie Mo,
5 months today...
Ain't no mountain high enough, ain't no valley low enough, ain't no river wide enough to keep me from getting to you, babe.
We love you, we love you, we love you!!!!
Mom, Ash, Chach and Keegs
Thursday, September 23, 2004 11:00 AM CDT Here it is, another Thursday- 2 weeks since Ashley last updated. I have been reluctant to change the journal entry- a combination of loving the story Ashley shared and how well it was written(if you haven't read it, you should), and the fact that we've all been in a bit of a "funk" here. From the very beginning, Maddie used this site to convey positivity, humor and generosity, and we have tried to continue on in this fashion. We are all feeling the enormous void that not having Maddie physically here with us has left, and sometimes committing words here, for all of you to read, is difficult. While visiting another caringbridge site, I came across the quote, "To take the sorrow out of death you would have to take the love out of life." Well, I would never trade the gigantic love that we all shared with Maddie to take any of this pain away.
As I have suggested, we are all struggling with our grief. I think of the enormous responsibility Ashley and ChaChi have with the start of a new school year. You see, it has been 4 months since Maddie died, and their friends have gotten on with their lives- that's not to say they aren't supportive, it's just not with the intensity that it was 4 months ago. While this is a distant memory for many, our grief is actually more intense today. We are dealing with all the "firsts" without Maddie; the reality that this was not just a bad dream; the fact that we have become close to many families who have terminally ill children who have died since our own great loss; the connection we have to many who are continuing to battle unbelievable odds... all this and they are getting up every morning expected to go to school, focus on their studies, do homework, take tests... I can't imagine, because I know my emotions are all over the map and my focusing skills are greatly impaired. I am so proud of the effort they are both making, of the new bond they are continuing to forge and the great honesty and perspective they are both using to confront and deal with their grief. I really do have unbelievable children.
Ashley is finding herself quite busy with school activities. In addition to being in NHS and on it's executive committee, she has started a club to motivate kids who are old enough to vote, she has joined student council, is helping to organize an asian club, has started a math study group, is on the committee planning the Sadie Hawkins dance... wow, I just got dizzy writing all of that down, and I've left off several things she has her hand in to keep this believable!!! I love her passion, her incredible wit, her willingness to open up to me, her deep understanding of the bigger picture.
Charlotte continues to be the most social child I know. In addition to working the phone and the computer every moment she can, her life is filled with sleepovers, movies, shopping and, of course, soccer. She played her first game of the fall season last Sunday, and while the result was a 2-0 loss, I am not exagerating when I say she played an excellent game. She is an incredible athlete, and did I say cute? Oh my goodness, she was in to see our favorite stylist yesterday, had her hair cut and highlighted, and left looking a tad older than her 12 years... she is missing Maddie tremendously, but she, too, is talking openly about it. I love her beautiful smile, her slighty mischievious way and her perfect balance of princess and tomboy.
Keegan is our ray of sunshine. His vocabulary expands every day, and he is so delighted with his new found ability to communicate with words. He loves all the activity that surrounds his life- time spent with his sisters and their friends(all of whom absolutely adore him), hanging with mommy or daddy, playing with Auntie Tricia("Tee-ta") and Auntie Sara, visiting with Uncle Jude and Uncle Tim, running after Lulu and the cat... this is a child who wakes up happy, goes to bed happy and pretty much stays happy all day long. He has yet to see a ball, a club or a bat he doesn't like, and his perpetual motion is a wonderful distraction. I love his unending energy, his complete joy and the unconditional love he gives so freely.
When I am feeling really down, I often go to some of Maddie's favorite caringbridge sites and search for the messages she left on them. It's a great way for me to connect to her and to be reminded of the incredible positivity and generosity with which she lived. Today I was thinking about my good friend, Jan, who is Harris' mom, so I went to their site. We met Harris near the end of his earthly life; one look at his huge smile and melt-your-heart eyes and we were hooked! Upon seeing Maddie's picture on her web page Harris told his mom, "She is one hot tomato!" Maddie then affectionately nicknamed him her "Sizzling Green Pepper." Following is a message Maddie left for Harris' parents at the start of 2004:
Jan and Hank,
... As we enter the year of 2004, I wanted to thank you for sharing Harris' story with all of us. The stories, the laughs, the pictures, and the tears, I cherish every last one of them. Harris was an amazingly special boy that will never lose a place in my heart. His body is getting a rest, but his spirit, his love for life, his personality, his determination... that all remains.
May love, laughter and joy fill you both and lift your souls past the clouds. Hugs and kisses.
Maddie www.caringbridge.org/mn/maddie
Sunday, January 4, 2004
I frequently picture Maddie surrounded by the many children she loved so immensely here on earth who are now with her in heaven. I imagine her and her friend, Christy, running the "Club Kid" she talked about... laughing, playing... free of any pain or stress. I know she is blissful and healthy, it is us who remain here who struggle. She continues to teach and guide me without fail, now if I could just be a better student...
Before closing, I would again ask for your prayers for our dear friend, Cheyenne. It is her 13th birthday today, so if you can, stop by and wish her a happy one. She is dealing with quite a bit trying to fight off the same tumor Maddie had.(www.caringbridge.org/tx/cheyenne5)
Harris' mom misses that sweet little boy so much. His web site is www.caringbridge.org/fl/harris. Stop by and say hello. Finally, my dear friend, Denny, continues her own battle. Please pray that her cancers stay in remission long enough for her to get the bone marrow transplant that she needs, and that the transplant is successful.
Thank you all for your continued love and support.
With love,
Julie-Ashley, Maddie, ChaChi and Keegan's mom
Thursday, September 9, 2004 10:12 PM CDT **Watch Maddie on HGTV's "Decorating Cents"!!!
When: Monday, Sept. 13, 8:30PM ET
7:30 Central
Tues., Sept. 14, 12:30AM ET
11:30PM Central
Sat., Sept.18, 3:00PM ET
2:00PM Central**
Hey there, yet again!
We're back at it! School! Summer always seems to fly by and the first day of school sneaks up on us every single year! As we try to get back to "normal," back into the swing of things, we are faced with problems on a daily basis. Some days it's as minor as a misplaced notebook and some days it's difficult to get out of bed and face another day of school without the enormous physical presence of Maddie encouraging us on. We knew returning to school would be difficult; it was always what Maddie looked forward too. Chach and I always dreaded it, but to Maddie it meant many more opportunities to both experience and learn about life. I'm not going to lie, back-to-school shopping was something we all looked forward to: I enjoyed buying new clothes, Chach liked to shop for shoes and Maddie was in heaven cruising the isles of the office supply stores...okay, so we were all motivated by slightly different things, but leave it to Maddie to get excited about the newest type of White Out! Oh Maddie-mo, her school supplies always had to be color-coordinated according to class, and if she wasn't satisfied with the selection of notebooks at one store, we would simply move on to the next until all of her English necessities were blue, etc.
We don't have much current news to share with you today, so today I would like to share another one of Maddie's stories about school from her first month of First Grade...
As many of you know, Maddie knew from the first day of kindergarten that her aspiration in life was to be a teacher. From that moment on our sun room was turned into a classroom filled from top to bottom with school supplies. If a stranger had wandered into our house and stepped inside this room in the front of our house, they would have assumed that the children that lived in this house were home schooled. It was that detailed and that damn good! Posters covering the walls, an easel was set up for morning meetings...she had her details down.
At first Maddie was able to find people to use as pretend students. They ranged from Chachi to Liz to me to Susie, basically anyone she could get her hands on. Well, very early on Maddie made it clear that she was the teacher and was unwilling to share this position with anyone else. Soon after this rule was established, attendance at Maddie's school began to dwindle. Finally, she found it difficult to find any live beings to play with. This most certainly would not stop her.
Maddie created individual work books and labeled each and every one of them with all of the names of fellow classmates in her class. At home, she took the role of teacher AND student, doing the same work in every single work book!
She even took to displaying work and art on our mantle, or the "hallway" as she liked to call it. One day, Grandpa Al noticed the work in the "hallway" had been changed. On top of the mantle were 8-10 different school buses, all similar but slightly different. After inspecting each bus, Grandpa turned to Maddie who was diligently correcting "papers" and asked, "Maddie, I noticed this school bus, here, isn't quite as good as the others. Why is that?" Maddie simply answered, "That's Justin's. He has special needs." Aaaaaahahaha! My poor grandpa just lost it! Not only was she completing the work of 20 some students, she was also doing the work to their individual ability!
Maddie,
Although you may not have graduated with your teaching license, you have taught more than you'll ever know. Your teaching went beyond facts and figures, and taught us life lessons that I feel are more important than anything I will ever learn in school. Even without your physical presence you teach me more about myself, more about life, more about beauty every single day. I love you, I love you, I love you!
Before I conclude this journal entry, I encourage you to continue to both visit and pray for our dear friend Cheyenne. www.caringbridge.org/tx/cheyenne5. Also, September 10 marks the day that "Butterfly" Julia earned her wings. Please stop by and leave her family some words of encouragement. www.caringbridge.org/pa/julialevy
Love,
Ashley (proud daughter of Julie, and Lucky sister of Maddie, Charlotte and Keegan)
Monday, August 30, 2004 8:15 AM CDT Hello everyone,
Well, it's been awhile since I last journaled. For no particular reason last week was the hardest emotionally for me so far. Tuesday I didn't even get out of bed. First time in almost 4 months, so relatively speaking, I'm doing well- it was inevitable that I would have a day like that sooner or later. Thankfully, as I always try to communicate, I have some really amazing kids. Ashley recognized my need to rest and she took ChaChi and Keegan for a fun day of shopping, so their day was enjoyable. Wednesday and Thursday were both pretty tough, too, but by Friday I was coming out of my "funk"- just in time to celebrate Charlotte's real birthday.
I think it's safe to say that Chach had a great 12th birthday. At 10 AM our friend, Terrell, arrived at the house to spend a few hours with us. After rallying the troops, we headed to PF Chang's for birthday lunch- ChaChi, Ashley, Keegan, Terrell, Emma, Dannie, Liz, Austin and myself. Great food and great friends. Then, Auntie Tricia had scored 4 front row seats to the Viking-49ers preseason game from her friend, Laurie. Laurie knows how much this game would mean to ChaChi- Terrell is the strength coach for the 49ers- and her seats are directly behind the visiting team's bench! So, Ashley took Chach and two of her friends, Lizzie and Emma, to the game. They had a blast! They made it on the jumbo screen a few times, were given footballs, programs and at the end of the game one of the players also gave them his glove! They said they were having so much fun singing, dancing and taking in all the other sites that they missed much of the game!!!(which, like last year, found San Francisco on the losing end of the deal) Oh well, no matter... in our eyes "everyone is a winner"(lol).
After such an eventful, and late, evening, Ashley and I decided to wait 'til the next day to give ChaChi her gifts. In addition to all that she had received from her admiring friends and other family, Ashley, Keegan and I wanted to give her some very special things. Of course there was the obligatory piece of clothing(Charlotte is a fashion queen), but we had received a beautiful sterling heart necklace and bracelet set from Maddie's benefit auction, and we decided to engrave the hearts with Charlotte's initials on one side and Maddie's on the other for her. Also, Ashley came up with the beautiful idea of finding a piece of jewelry with a butterfly- a symbol we have come to recognize as Maddie, after some pretty amazing occurances this summer- as a way of really including Maddie in the gift-giving. We found a lovely necklace- a diamond heart with a little pink sapphire butterfly- the perfect gift, and one I told ChaChi she may have to let me and her big sis borrow sometimes!!! Not having Maddie physically here with us was difficult, but we really could feel her all around us and my princess, Charlotte, received the royal treatment and had a very special birthday.
School begins in two very short days. Charlotte is going up to school today to help our good friend, Cindy Quehl, her choir teacher, get her room ready. She is planning on staying into the evening for orientation to receive her schedule and meet her new teachers. I'll stop in and say hello, too. Ash spent a little time helping her dance teacher last week, so I guess you can say that they are both getting their "feet wet" before diving back in. It's going to be a big adjustment for me and Keegan not having them with us all day!!! I'm really going to miss spending so much time together, but Keegan is such a good little buddy, we'll find things to keep us busy!!!
Thanks again to everyone who stops by. Your continued love and support is so helpful, and your messages are truly appreciated.
I am going to keep Maddie's letter posted. Eventually, I think I'll move it up to the top of the page and keep it there permanently.(if you haven't noticed, I added a quote of hers there today) Maddie's words are so beautiful, and have touched so many, it seems fitting to leave them here longer so a wider audience can enjoy them.
Today I have decided to share a very special letter Maddie wrote to me the week she was diagnosed. It was found quite by accident, and I chose not to tell her I had found it until shortly before she died. That was almost impossible for me to do, because it is so beautiful. I am sharing it today because so many of my dear friends have lost their children this past year. While this message was written by Maddie to me, I believe that these other children felt similarly, and were either too young or unable to write their feelings- so I share this with you, my dear friends whose children have died, as a vehicle for them to communicate their love for you.
I can't even begin to express my love for you. It is so great, so big. A lifetime of love, just like my love for my sisters and Keegan. If I began to describe it, it would go on and on around this world and throughout the universe. I love you so much and I couldn't have grown without you. Know that, always know that.
Everyone has a time to come and go. My time to come was on a cold morning on January 16, 1990. That was the day you gave me life, that I began this journey called Life. Sadly, today is my day to go. And know that I am in peace. You couldn't have done anything different to change the fact of it. You did everything the best mother could do. Never, ever forget that. I am in a place where I can relax now.
Mom, you gave me life fourteen years ago. Never once have you stopped loving me or supporting me in that time. When many could have let go, you were there, strong at my side. You are the sunshine of every one of my days. Know that wherever life takes us, you will never stop shining, on me or with me.
As you and I understand, we are best friends. Of course, we can tell each other anything two friends could say, or any secret. I want you to know my biggest secret is how fast this has come upon me. You already know this of course, so you know most things about me. Know that I have not left you with a single secret about myself. Know that you know every single thing there is to know about Madeline Taylor Paguyo. Know this.
I cannot begin to thank you for this life. If I were to start, it would go on just as my love for you. I could never stop thanking you. Wherever you are to go, know how deeply appreciated you are. Know how much you are thanked for your deeds of kindness. Thank you, thank you, thank you.
Mom, after all the requests and needs I've had to have, I have one additional one. I need you to move on. Cry as much as you want today, but you have no idea how strong and bold you have to be tomorrow. It would be silly to shed another tear on me. I am waiting for you. I will always be with you- just as you have with me. I will never leave your side. You can be strong for Ashley, and Charlotte, and Keegan though. I know you. I know all the events you have moved on from in your life, and I know you can move on from this. I love you.
Tami, Jeremy, Melanie, Gary, Lorri, Russ, Susan, Mark, Aleta, Karla, Bruce, Jan, Hank, Kim, Steve, Lorraine, Judy, Jarrod... and all who have children who have died- I pray you find comfort in these words, and in the knowledge that you do not walk this road alone. We are all holding each other's hands, offering the love, support and compassion that only someone who has gone through this can completely grasp. I truly hope my list of names grows no longer.
Maddie, you and your siblings continue to be the sunshine of every one of my days. I love you so much and as I have told you, I am the luckiest, most blessed mommy alive.
With love,
Julie- Ashley, Maddie, Charlotte and Keegan's mom
Thursday, July 29, 2004 7:01 AM CDT **It is with a profound sense of sadness that I am writing to share that at about 1:45 AM, today, August 3,
our dear friend, Celeste, took flight to join Maddie, Jake, Isaac, Christie, Corinna, Nolan, Julia, Harris, Sara... in heaven. Celeste is finally free to soar- but her family and friends are now faced with the overwhelming task of continuing to live without the physical presence of their beautiful Celeste. Please stop by her website and offer your support.
Tami, Jeremy, Grant, Ella and my shining star, Celeste- We love you and hold you in our hearts now and always.
Thursday again. 12 weeks. We appreciate your checking in on us, and your messages of support and shared memories and thoughts of Maddie left in the guestbook continue to strengthen us. Thank you.
The kids and I have had a low-key week(by our standards) since I last updated, but it has been nice. Lots of time spent together- a Kerry/Edwards party with a live band; more long walks; a family friend's backyard carnival, with the funds raised being donated to Children's Cancer Research; hanging out in our yard by "the pool"(Keegan's wading pool), watching him literally belly flop in... and our biggest news of the week, and the biggest consumer of our time... we got a PUPPY!!!!!!!!! She joined our family on Monday and she is absolutely ADORABLE!!!!!!!!!! Her name is Lulubelle- Lulu for short- and she is a "Goldendoodle."(her mom is a golden retriever, her dad a standard poodle) The kids are having a lot of fun getting to know her. Hopefully, someone will show me how to update the photo page and we can post some pictures very soon.
We are doing well. We speak of Maddie all the time; looking at photos, drawing pictures, writing poems and stories, journaling, sharing stories and dreams are all ways we continue to help each other and ourselves as we keep on keeping on. I love to see Ashley and Charlotte use their creative talents as vehicles to process their feelings. We hear Keegan talking to Maddie frequently, and as I have previously shared, not a day goes by that he doesn't send many kisses, hugs and high-fives heavenward to Maddie. I am a lucky mom, as all four of my children are truly AMAZING!!!!!!!!!
Since I last journaled, I have gotten the ball rolling on my business concept and have had some conversations with my friend, Susan, about a foundation that will both honor our two children and have a profound, positive influence in the lives of children diagnosed with brain tumors and their families. Hopefully, Susan and I will meet in person very soon to give this project some very deliberate attention. I am also working on Maddie's book project- so you could say my plate is very full!
Before swithching gears and sharing another of Maddie's friend's speeches with you, I need to again ask for your support of some very dear friends. Please keep my friend, Denny, in your thoughts and prayers. I have known this wonderful woman since her twin daughters, Amanda and Allison, were in kindergarten with my daughter, Charlotte. She has been battling lymphoma as long as I have known her. This year, things became much more advanced, and recently, things have become even more complicated and critical. Also, please remember to stop by and check in on Isaac's family. I can tell you that overt support dwindles once your child dies. Families really need to know that their loved one, and they, are not forgotten. Isaac's awesome family is preparing a wonderful celebration of his life- and since we can't physically be there to support them, a message sent their way would be great. Cheyenne is experiencing some difficulties as she continues to battle this beast of a tumor, and she could use your well-wishes. And finally, my sweet friend, Celeste, is experiencing many of the devastating effects of this damn disease. Maddie and I met her and her beautiful family last year when we traveled to Pittsburgh, so I have an even more personal connection to them. In addition to Celeste's obvious needs, her family is also in great need of our love and support as some of them are struggling so much just to hang in the fight.
www.caringbridge.org/wa/isaac
www.caringbridge.org/tx/cheyenne5
www.caringbridge.org/pa/celeste
Finally, I will share the lovely speech Maddie's friend, Dannie, gave at the memorial service. Dannie has been a very good friend since early in elementary school, and she was amazingly supportive of Maddie throughout her illness- and continues to love and support us now. I love you, Dannie!!!
There are so many things to say to you Maddie, but all that comes out is 'I love you, I love you, I love you so much.' Those words mean a lot to me because they're so true, but I'd like to say a little more. "The Next Place" is a book by Warren Hanson that gave me a comforting way of knowing you are okay in heaven. My mom gave this book to me after Christie's memorial service, and I want to share some with you. "The Next Place I go will be as peaceful and familiar as a sleepy summer Sunday and a sweet, untroubled mind. And yet it won't be anything like any place I've ever been, or seen... or even dreamed of in the place I leave behind. I'll glide beyond the rainbows, I'll drift above the sky, I'll fly into the wonder, without ever wodering why. I will travel empty-handed. There is not a single thing I have collected in my life that I would ever want to bring. EXCEPT... the love of those who loved me, and the warmth of those who cared. The happiness and memories and magic that we shared. Though I will know the joy of solitude, I'll never be alone. I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one, and the circle of our spirits will shine brighter than the sun. I will cherish all the friendship I was fortunate to find, all the love and all the laughter in the place I left behind. All these good things will go with me. They will make my spirit glow. And the light will shine forever in the next place that I go."
MADDIE, I know you will always be with me, and that will comfort me as I await patiently for the day that I can see you. I'll miss you like crazy, but I know when we meet again you'll tell me about your trip, and there'll be Maddie smiles all around and the fun will never end. Maddie, I love you, I love you, I love you so much.
Thank you all for your support and friendship.
With love,
Julie
Thursday, July 22, 2004 9:16 AM CDT Please continue to stop by other caringbridge websites. I can't tell you how much we all appreciate your uplifting messages. 3 children who are extremely special to me are Isaac, Celeste and Cheyenne. These amazing kids were all diagnosed with the same tumor as Maddie, and she supported them through phone calls, emails and cards while she was here. They, and their families, have become very dear friends. I am so sorry to write that Isaac passed away sometime late last night or early this morning. From personal experience I know that while his family is relieved that he is no longer suffering from the effects of this horrific tumor, they are in great pain as they try to imagine their life without his physical presence. Please stop by and visit all 3 of my special friend's sites and leave them a message. Thanks.
www.caringbridge.org/wa/isaac
www.caringbridge.org/pa/celeste
www.caringbridge.org/tx/cheyenne5
Good morning to all,
Wow, how can it be that time flies by, yet stands still? I look at the calendar and see the date and wonder how it can be. In some ways it feels like Maddie was physically right here yesterday- and in others like it has been an eternity since I had her lying in bed with me, giggling as she and her Brother Bear, Keegan, rolled around hugging and kissing each other. Eleven weeks today. Thursdays can be hard for me.
Let's see. A lot to quickly share... ChaChi is back from camp. She had a WONDERFUL time. Many friends were there with her, and of course she returned having made many new ones. She did mention some homesickness, and more specifically missing Maddie. So many people there were well. aware of the situation, so she had fantastic support. This past weekend she finished her summer soccer season- and we now have 2 WHOLE WEEKS before the fall season begins!!! I say that a little tongue-in-cheek because basically soccer is a year-round commitment for her. Charlotte has become an excellent player- heck, she's a terrific athlete- and it's really neat because none of her teammates are schoolmates, so her circle of friends has expanded considerably through this experience. I love the girls she plays with, and many of their parents have become very good friends of mine.
Ashley is having a very quiet summer- maybe more quiet than she would like. She is working- "babysitting" for 3 different families on a regular basis.(I say "babysitting" because 2 of the 3 families have children who are really old enough to be alone, but having Ashley and her ability to drive affords them more flexibility. They are all family friends, so it's pretty easy and enjoyable work.)
Her friends have not been around much, so she is spending much of her free-time with me. That's been really nice for me, but maybe a little boring for her. We have taken to going on long walks- 6-8 miles at a time- and Keegan rides in his stroller happily. She is also very motivated to work on the Kerry/Edwards campaign, and it's great to see her enthusiasm come through. Ashley is a very passionate person, and her passion has been a bit smothered by her understandable sadness. I love to see it shining through.
Keegan is, as always, terrific. Happy, active and so full of hugs, kisses and "thumbs up" for all of us. Not a day goes by that he doesn't send kisses and hugs up to heaven to Maddie- he loves to look at pictures of her, and is so animated in his thrill when he watches videos of her. We are so lucky to be able to see things through his eyes- so uncluttered.
I am mentally very busy. I am back working on a business concept that I had two years ago. Maddie was super supportive of the idea, as were my other girls, and it is on my mind a lot, so I know I'm supposed to get my butt in gear and get on it. I also am energized to get working on Maddie's foundation. I am hoping to collaborate with my friend, Susan, on some ideas to really bring much needed attention to pediatric brain tumor treatment. In addition to my obvious passion regarding this issue, Susan is that kind of rare friend that you just know you are supposed to do great things with. I'm excited to have some direction now, as I have been feeling paralized. Today I could go on and on, but I will shift gears now and share with you a poem, written by a very good friend of Charlotte's, Emma Forschler. ChaChi and Emma play soccer together, and Emma quickly found her way into my heart. She is so funny, but also very sincere. Our entire family loves her very much- Ashley is always thrilled when she hears Emma is coming over, and Keegan is the luckiest kid alive when she is here because she truly adores him. Emma emailed me this poem shortly after Maddie died.
Tomorrow I will see her
And I just can not wait
She is the bravest in the world
Death is no longer my fate
Because I know
When I go
I will see her
Playing, laughing, loving
We'll be doing each others hair
Because up there
High in heaven
All hatred from Earth is gone
Just like the night's darkness, changing into brightness of morning's dawn
I know she'll be there
When something good can occur
I know she'll be there
When all clouds clear the sky
I can see her fly
When I hear the rain raining
She's simply just right there
When the winds blow through my hair
She's watching in humor,
When a young child laughs
She'll be there for the happiness in a second and a half
She's here, She's there
Helping, wishing, loving
I will see her tomorrow
Tomorrow I will see her
We appreciate all who continue to check on us and support us on this journey.
With love,
Julie
Sunday, July 11, 2004 5:49 PM CDT Please stop by the following websites and leave an uplifting message of support for our very dear friends and their families:
www.caringbridge.org/pa/celeste
www.caringbridge.org/wa/isaac
www.caringbridge.org/tx/cheyenne5
Thank you- these messages mean so much- more than you'll ever realize!!
Good evening to all,
As promised, I will continue to share with you all many wonderful things written by and about Maddie. Today, Liz, Maddie's best friend since kindergarten, came over to spend the day with us. She was one of the six friends who spoke at Maddie's memorial service. All of Maddie's close friends are very dear to me, but Liz holds a very special place in my heart- she truly is like another daughter to me.(I know her mom will take no offense to my saying that- Liz and Maddie have been inseparable since they were five and there were long stretches during summer vacations when her poor mom would have to swing by my house on her way home from work just to have a visit with her own daughter!!!!)
Tonight I will share with you Liz's tribute to Maddie.
Maddie and I were friends since kindergarten, but we weren't just ordinary friends. I wouldn't really say that we were best friends because that would be an understatement. We were more than that. We were the type of friends who did everything together and I mean everything. We had hundreds of sleepovers and I would spend weeks at her house during the summer. We would stay up late at night and talk about everything from our favorite new songs to John Licht, who was of course the cutest boy in school. We went on each others family vacations, had joint birthday parties since 2nd grade and played the craziest games such as school, royalty, olden days, Judge Judy, church, Barbies,tornado and business. I feel like I'm the luckiest girl in the world to have spent that much time with her and have her as my closest friend. I'll never forget all the amazing times we've had together and everything Maddie taught me. We'd always say that we'd be best friends forever and some things never change. I love you, I miss you and I can't wait to see you again.
-Liz Shay
Liz, your's truly is a friendship that knows no boundaries, and you and Maddie are connected for eternity. Thankfully for me, Ashley, ChaChi and Keegan, you are part of our family forever, too. I love you!!!
Thanks to everyone who continues to check in on us!
With love,
Julie
P.S.: ChaChi comes back from camp tomorrow... we can't wait, we've REALLY missed her!!!!!!!!!!!!!!!!!!!!!!!!!!
Thursday, July 1, 2004 6:29 PM CDT **Added Monday, July 5:**
I took ChaChi over to Mount Olivet's parking lot this morning to put her on a bus for a week away at camp. I must say, the house is going to seem very empty without her- she is quite a wonderful, big presence. Poor Ashley, I may not let her leave to go out with friends the entire week!!!(lol) Thank goodness Keegan(1 1/2) still relies on me for his social life!!
Have fun, Chach!!!! We'll miss you tons and tons!!!!
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Hello,
It has been exactly eight weeks since Maddie's spirit took flight on it's "most amazingly awesome journey", as Ashley has said to me. I must say it has been an incredibly difficult eight weeks- full of so many losses for me and the kids that at times I am overwhelmed. Fortunately, Maddie infused so much of herself in me before she physically departed that if I focus really hard, I can find the compass she left for me and guide myself back on track. Her incredible energy, combined with the steadfast love of my family and many friends has been even more valuable and necessary than the support that so many gave while she was still here. Maddie exuded love, strength, grace and positivity(to name a few attributes). Even as her body was tiring, I felt her continuing to teach, direct and support me, and all those around us. She and I told each other, many times, that we would never be apart, because we truly carry one and other in our hearts- but to all of you who help to pick me up when I am feeling so sad from the physical void- THANK YOU!!!
I have posted that nightime was extremely special for me with Maddie. Often times Charlotte and Ashley hung out with us, Keegan was usually a sleepmate, but Maddie and I were ALWAYS sleep buddies. Our activities usually included me giving Maddie a hand and foot massage; talking incessantly about anything and everything; reading to Keegan if he was with us(and TONS of hugs and kisses between Maddie and her Brother Bear); and we always prayed out loud together. Maddie rarely asked God for anything relating to herself. She did, however, try to remember as many of her sick friends and their families as she could. Tonight I will share a prayer she wrote as she spoke it- very much "on the fly". I can't remember exactly when it was written- clearly some time ago as many of the children mentioned made their amazingly awesome journies before Maddie.
Tonight we gather here to share,
All our hopes and heartfelt prayer.
We ask for happiness, health and peace,
Love, kindness and forgiveness to ease.
Sometimes life can take its toll,
But gracious friends have helped fill the hole.
We pray for the health of Sara, Celeste and Jake,
Katia, Dylan, Cheyenne and Corrina for their own sake.
Dave, Luke, Kody, Hayley and Chris,
Julianna, Sam, Isaac and all that I've missed.
All of my family; to feel love and support,
We whisper these prayers to you, my Lord.
For cancer and illness to flee from all,
And you, my Lord, to stand worthy and tall.
Without being too selfish, I ask for your good deeds,
Especially for two friends, Denny and Christie.
For their bodies, souls, for their minds,
Their complete recovery, that's been hard to find.
Stay with them tonight and ease their pain,
For their bodies are feeling drained.
For the families of the Angels to feel comfort and peace
In the resting of their loved ones now at ease.
For the Angels up there to feel joyful and free,
Marissa, Julia, Harris, Nolan, Maddie and Ashley.
My last request, for cancer's defeat.
Physical recovery soon to meet.
We close with this prayer to send-
Health, happiness, joy- Amen.
I miss my beautiful Maddie more than I can explain- nightime is often excruciatingly difficult- but on a couple of very special occasions, sweet Maddie has come to me- VERY vividly- in my dreams, and I am reminded how very close she really is.
I continue to keep all of you friends who have, and continue to be, a part of this journey in my prayers.
Thanks for checking in on us. Enjoy the long weekend and be safe.
With love,
Julie
P.S.: Please continue to keep all our caringbridge friends in your thoughts and prayers. I am again asking for special wishes to be sent to three EXTREMELY EXCEPTIONAL children, who Maddie cared a great deal for. I consider them and their families to be very good friends.
www.caringbridge.org/pa/celeste
www.caringbridge.org/tx/cheyenne
www.caringbridge.org/wa/isaac
Saturday, June 26, 2004 6:28 PM CDT Hello to eveyone,
Last night, Ashley, Charlotte, Keegan and I joined our good friends, the Fenns, at Pamela Park in Edina for "Relay for Life." Because it was a last minute deal, we didn't do our typical "rallying the troups"- however next year I'd love to get a big team of friends and family together to honor Maddie's memory. It was a lovely Friday evening, and it was comforting to be among so many wonderful people out to raise funds and awareness for cancer research and prevention. Keegan loved having free run of the park and the girls and I spent a great deal of time decorating luminary bags that lit the walking path. The many bags were placed in honor of loved ones lost to this horrible disease, in support of people currently battling this beast, and in celebration of those who have beaten it and are now living cancer-free lives. We made several bags for Maddie, and then tried to make one for each of the many wonderful people we know who fall into one of the three catagories mentioned above. As I sat there amongst paper bags and magic markers it struck me how profoundly our lives have changed since April 28, 2003. At the time of Maddie's diagnosis I had ONE good friend with cancer. The girls and I sat calling out names so as not to forget anyone, the list growing bigger and bigger- and I realized that while it was cancer that brought these many people into our lives, the love and admiration I feel for them and their families is much bigger than cancer. I am now both happy and sad to say that the ONE friend has grown to MANY.
Today I will share another guestbook entry Maddie made to Judy, Julia Levy's mom, after Julia had died. Maddie puts into words, very well, the feeling I have about her presence in my life.
Judy,
Reading all the guestbook entries today just confirms the beautiful ways Julia is among us, as a butterfly, an angel, or what not. Sometimes when I am all alone, I feel as though I am not. You know the feeling? I know she is here with me, with us. I can almost sense her, angel wings and all, watching over me, watching over all of us. I know it must be terrible to not be able to hold her, to see her, but I believe she is holding you at this time, and she is watching you too.
Maddie
-Sunday, September 28, 2003
Maddie is right. What I would do to be able to kiss and hold her, to hear her laugh, to visually soak in her radiant beauty- and yet, I do feel her enormous presense. She is right here- to look to and to lean on whenever we need her amazing insight, her strength and courage, her unconditional love and trust- she is right here.
Thanks for your continued love and support.
With love,
Julie
P.S.: Please visit the caringbridge sites of our following 3 friends. Each one of these children were diagnosed with the same type of tumor as Maddie. All 3 are experiencing various symptoms, indicating that the tumor is growing, and all of them and their families could use your uplifting messages and prayers. These 3 children were very special to Maddie, and I have continued to follow their stories very closely, as she did.
www.caringbridge.org/pa/celeste
www.caringbridge.org/tx/cheyenne5
www.caringbridge.org/wa/isaac
Thursday, June 17, 2004 8:22 AM CDT Hello to all this Thursday morning!!!
Today marks 6 weeks since Maddie physically left this earth. I have spoken often as of late about the comfort I take in knowing that Maddie had no doubt that she was going to heaven, and that this would be a wonderful, permanently blissful and peaceful place. Last week I spent 2 days reading through many of the messages of encouragement Maddie left for others on their caringbridge websites. Many were notes cheering kids and adults through their own battles, others were letters of comfort she wrote to families after the death of their loved ones. All of her messages were incredibly positive and insightful. Today Maddie's Uncle Paul has left a message to Ashley and Charlotte highlighting two of these notes that Maddie sent to the family of Julia Levy, a beautiful little girl who battled the same tumor as Maddie. I think they are more than worthy of a wider audience, so I am making them the journal entry for today.
Why do certain people go through things like this? Why do these kinds of things happen to great people? I've spent the last several months trying to figure out the answer to that question. The truth is no one should have to go through things such as this. I gave up on there being a reason after telling so many people that there was...
But even though we may give up on there being a reason, maybe there really is one. Maybe no one knows that reason except for Julia and her new friends. Maybe there's another page to the story that we are soon to learn...
I know this doesn't heal all the pain that you are feeling, but it could possibly help. I know there's a reason to life, but what is it? Why do you live if you are just going to die? Just like we don't have a definite answer to that, we don't to suffering either. Though we don't have an answer, we have to accept that there is sure to be a reason behind it... we just may not know it.
"Even in the desolate wilderness, stars still can shine."
-Aoi Nozami
Maddie
-Saturday, October 25, 2003 10:41 PM CDT
A Butterfly
A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly.
He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly.
What the man in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life.
If God allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as what we could have been. Not only that, we could never fly.
Maddie
-Monday, November 10, 2003 7:31 PM CST
I find myself constantly in awe of Maddie's incredibly trusting and peaceful spirit. Maddie had some limited religious instruction and was raised by me, very much a "wandering" catholic. We did pray together, out loud, every night. She was one of those pure souls that is capable of embracing the unkown with complete trust and genuine enthusiasm. She believed in a God who has a beautiful master plan. Her beautiful, shining light will continue to illuminate my path for the rest of my life- I'll just have to remember to look for it when I find myself lost in the desolate wilderness.
With love,
Julie
Monday, June 14, 2004 11:40 AM CDT Hello to all on a beautiful Monday in Minneapolis,
We have decided to continue using stories and speeches to update the website for awhile. Maddie, her sisters, friends and other family members have provided a wealth of resources that we really think are wonderful and worth sharing with you all.
Six of Maddie's very good friends spoke at her memorial service and all of them did an amazing job. Today I will share Austin's speech with you. It so clearly illustrates one of many of Maddie's personality traits that I hold so very dear.
Dear Maddie,
Hey Maddz, how are you doing? I guess that's kind of a stupid question since you are in the perfect paradise now. You should know how I'm doing because I would hope that you would be watching over me and keeping me on track. Hey you know what I was thinkin' about the other day when I was laying next to you on your couch?... After all the sleepovers and fun times, the one time that makes me laugh out loud and think of you just being you. It was that one night when I came over and you had planned the WHOLE night for us. Do you know what I'm talking about? You had that little pink piece of paper that had four things for us to do that you had planned out. Each one had a little box next to it, to check off ater we had done it. First, we dressed up, one as a frog and one as a panda bear- of course you got to be the pretty panda. We went and played in the rain and ran up and down your block making funny noises! After that we came back inside and on that piece of paper we checked off: Playing in the Rain. Next on the list, now Maddie I know you remember making those gingerbread houses for about five hours and we barely even finished them! That was a little crazy Maddz, but it was fun. There, we had two down and two to go so we went right ahead and had our spa time. We did facials, manicures, pedicures, make-up, everything! It was great but we still had one lonely box that had not yet been checked off. You looked at it and it said: Bedtime. Check. So we went to bed and you read and told me stories and even tucked me in with a kiss goodnight. I love you tons and tons Maddz, know that. You've givin' me so much more than any friend could ever ask for. But I was just fine with the privilege to be so close to you, and you being such a great part of my life. We spent so much time together doing the weirdest things, but it was just so Maddie. I can't wait to see you again, I miss you! Thanks for everything. It was amazing. YOU ARE AMAZING.
I love you,
Austin
Thank you, Austin. Your recollection brings a big smile to my face. As I have said many times before, the friendship you and Maddie share is an awesome one and I know you know how much she loves you.
If you have not read the previous journal entry- which is a story that Maddie's older sister, Ashley, has written, and a poem that her younger sister, Charlotte, wrote and read at the memorial service- I encourage you to go back and read it. They both convey so much of the love and admiration they have for Maddie in their writings.
We all continue to do well. I must say that a bit removed now from all the hubub of planning the service, visitors all gone... it has hit me how profound the loss of Maddie's physical presence is. I miss her more than any words could ever convey. I am so thankful for all she was and continues to be in my life, and for the amazing strength and peace she showed me. It helps to know that she has achieved what we are all working toward- but I do miss her like crazy.
Thank you for continuing to check in on us.
With love,
Julie
Sunday, June 6, 2004 12:00 AM CDT Hello to all!
I'm sure you're all giddy as we anxiously anticipate the start of summer vacation. I write to you today because, as most of you know, it has been exactly one month since our Maddie-mo-mo ascended into heaven, smiling the entire way as she floated upward through the clouds. Although we miss her like crazy, we remain both proud and in awe of the legacy, love and life lessons she left us with.
Throughout the past month, Maddie has paid visit to many. She travels in many different forms. Sometimes as a cardinal, sometimes as a song and even (my personal favorite) as a shining star. That's our Maddie! Always keeping us guessing! These encounters are always exciting and are her special way of reminding us that she is always with us!
When I returned to school, one of the first projects I was assigned was the task of writing a children's book for my Spanish final. I knew of this assignment prior to Maddie's passing, but could not possibly think of a single concept as the basis of my book. After she passed, the idea came to me and seemed only obvious. My book, titled "Su Hermana, Su Estrella", is my attempt to teach Keegan a tiny bit about his SuperStar of a sister. I have translated it so that I would be able to share it with all of you.
"Your Sister, Your Star"
By Ashley Paguyo
Dedicated to BrotherBear. Never forget DabooDEE's hug!
Long, long before your time, far far off in the heavenly skies, chaos broke loose. Out of a cosmic whirlwind emerged a single star. This star shone so brightly that everything in its path stopped to watch in wonder.
Far, far below the heavenly skies sat an expectant mother gazing up at the night sky. Unable to sleep, the anxious mother knew her baby was on its way.
The baby was on its way and on its way fast. As her husband drove her to the hospital, the mother could not help but notice the single star in the night's sky. This star was strange. It seemed as if it were smiling down on her.
The baby was delivered safely as morning broke. Ten to six, to be exact. As the mother rocked her baby, she scanned the skyline for the unusual star. It was no where to be found.
The years passed by and the child grew and grew. Her name was Madeline. Madeline was a star in her own right. She loved learning and was bright beyond belief. When she smiled, it sparkled and her eyes twinkled. Her personality illuminated the hearts of many.
One day, Maddie started experiencing headaches and nausea. Her worried mother took her to the doctor and they discovered she had a rare brain tumor.
Just a week after diagnosis, Maddie participated in her school's production of "Sound of Music." Everyone assured Maddie she need not participate if she did not feel up to playing the role of "Mother Abyss." Maddie did not even consider such a thing! She had no intentions of letting a brain tumor stop her. She showed everyone she was fine as she lit up the stage!
Maddie packed in more wisdom, love and life into her fourteen years than most others are capable of. She died the way she lived; full of grace and complete peace, surrounded by the love of her family.
As her spirit drifted upward through the blue sky, a single star could be seen directly above her family's home. When you miss her, all you have to do is look to the sky for the brightest star and wish upon it. Close your eyes tightly and listen for her laughter filling every corner of the night's sky.
"To be a star, you must shine your own light, follow your own path and not worry about the darkness for that is when stars shine the brightest" -Author Unknown
El Fin
Our star has returned to the sky and is smiling down on all of us! Celebrate each day that is granted to us! Today and everyday I encourage you to look to the sky, find the brightest star and sing to it at the top of your lungs! Check in on Maddie as she continuously checks in on us.
Well, Maddie-mo-mo, I love you like a HUNK-A-SMUNK!
Sincerely, Ashley (Maddie's older "sissy")
***************************************
My Great Sister
By Charlotte Annabel
A great sister loves,
A great sister cares,
A great sister hugs her sister just like a bear!
A great sister helps wherever there is a cry,
A great sister’s heart is as big as the sky,
A great sister helps there sister in need,
A great sister teaches by taking the lead!
My sister is a great sister and more,
She inspired me while I watched her soar,
My sister is a great sister,
Does she ring a bell?
My sister is Maddie,
Couldn’t you tell?!?!?!
Maddie~
I LOVE YOU LIKE A FAT KID LOVES CAKE!
Wednesday, June 2, 2004 8:27 AM CDT Hello all,
This is Maddie's sister, Charlotte, today! I am updating now to share a poem that I wrote to Maddie and read at the memorial service.....so here it is:
My Great Sister
A great sister loves,
A great sister cares,
A great sister hugs her sister just like a bear!
A great sister helps wherever there is a cry,
A great sister’s heart is as big as the sky,
A great sister helps their sister in need,
A great sister teaches by taking the lead!
My sister is a great sister and more,
She inspired me while I watched her soar,
My sister is a great sister,
Does she ring a bell?
My sister is Maddie,
Couldn’t you tell?!?!?!
Maddie~
I LOVE YOU LIKE A FAT KID LOVES CAKE!
Thanks for all of your love and support!
-Charlotte Paguyo
Monday, May 24, 2004 10:36 PM CDT Hello to everyone,
I thought tonight I would share with you all a poem, written by Maddie, that we included as an insert to the program for her memorial service. I have no idea exactly when Maddie wrote this- sometime in the past year after diagnosis- I found it in a notebook of hers before she passed away.
What if the sun didn't shine tomorrow?
What if we didn't ever waken?
What if our lives were ended?
What if our lives were all taken?
Would you be happy with your life?
Would you rest in peace?
Would you leave with no regrets
If you were suddenly deceased?
Don't go to sleep tonight
With regrets for tomorrow
Never go to bed angry
Don't fill yourself with any sorrow
Kiss all your family before you sleep
Wish everyone a prayer
Because what if there wasn't a tomorrow?
We can't tell the future from here
Try not to fight (and if you do)
Always be ready for a following kiss
Because it's just not worth it to leave this world angry
Or cry for someone you miss
So tonight go to sleep happy
Because tomorrow isn't guaranteed
And anger sorrow and tears
Are not what you need
My Maddie. So wise and beautiful. She truly lived by her words and I am trying hard to follow her example- it's not always easy, though.
My wish for all of us is that we find the pure peace that radiated from my incredible daughter.
Have a wonderful night and thank you so much for continuing to check in on us.
With love,
Julie
**My father is still looking for your help in collecting stories, thoughts and observations about Maddie and all aspects of her life. Teachers, coaches, friends, family... anything you can share with him would be greatly appreciated. Grampa Al is looking for info from all stages of her life. Thanks so much for your contributions to his project. You can contact him at #814-772-5333, email @ bigowl@alltel.net, or write him @ Al Dornisch 428 Lookout Av., Ridgway, PA, 15853.**
Thursday, May 20, 2004 9:04 AM CDT Good morning to All,
"How are you all doing?" is a question frequently asked. We are doing better than can be expected. That is not to say that we do not miss Maddie's physical presence- we do, and we are very sad. There are times when I walk into the family room or out to the car to give rides to school and I truly believe she will be there- sadly, I am disappointed not to see her- and yet I feel her presence everywhere.
Keegan is a bit confused, I imagine. During the past year he slept with me and Maddie more often than not. Every night before falling asleep and every morning upon waking he would climb over me to get to Maddie to give her hugs and kisses. Maddie and her "Brother Bear" had so much fun together, especially after she stopped going to school. Every day was an adventure. Keegan called Maddie "Daboo" before she died. He has now added an extra syllable, "DabooDEE", emphasizing the "DEE". We talk to him about Maddie and show him lots of photos every day. He points and in his sing-song voice identifies his "Daboodee." He is so darn cute.
Charlotte is hanging in there. I am so proud of the way she has opened up and is talking about how she is feeling. The week before Maddie died Charlotte wrote her a beautiful letter telling her how much she loved her. We were able to read it to Maddie, and the two of them were able to say "I love you." I am sure that Charlotte will hold onto these words, and the countless memories of shared experiences in which their love and admiration was so obvious, for the rest of her life. I am also amazed by the poise that Charlotte demonstrated at the memorial service when she got up in front of everyone and read the beautiful poem she had written about Maddie. She is really growing up, and my love for her grows every day- if that is possible. She is back at school.(kind of) If she is feeling sad or too overwhelmed ChaChi goes and hangs out with Ms. Quehl. I have to say, the school has been fantastic and we are so blessed to have so many loving friends there. Charlotte is also back playing soccer on her traveling team- she is quite an athlete and it is so much fun for me to go and see her play.
Ashley is also doing well. Two days after the service was her prom. I am not overstating it when I say how stunning she looked- really like a greek goddess- and her boyfriend, Max, could not have been a more handsome date. They were crowned "Princess" and "Prince" of the prom. These titles are but a faint tribute to the remarkable people Ashley and Max are. They have both handled this unbelievably challenging time with such maturity and grace. I love you both and am so very proud of you. Ashley is also back in school, trying to do as much of the work as she can. She is obviously in a different boat from ChaChi, as junior year is so important. Again, the school has been very supportive and I think we have everything worked out.
I am tired and have caught a doozy of a cold. This past year has been packed with so much action and such a range of emotions. These past two weeks have been a whirlwind. The memorial service was so beautiful, such a fitting tribute to Maddie's amazing spirit. I could never thank by name everyone who helped to make it the event that it was- so I will simply say THANK YOU to every single one of you who participated in any way- you have my sincere love and appreciation. I know I just said that I wasn't going to single anyone out, but I want to convey special thanks to Maddie's friends who got up and spoke. You girls and your friendships meant the world to Maddie. It was obvious by your desire to speak, as well as through the gentle yet powerful words you shared, how much you love Maddie. Each of you carry a part of Maddie with you, so through you, I will get to see Maddie grow up. I am so thankful to have you all in my life. I love you very much.
My dad wanted me to say again how much he needs your help. He is writing Maddie's story and is looking to everyone to help him collect as much information as possible. He is asking teachers, coaches, friends, family and acquaintances to send any stories, insights, thoughts or observations to him. No information is too big or too small. Please direct this to: Al Dornisch, 428 Lookout Av. Ridgway, PA. 15853, phone # 814-772-5333, fax # is the same, but call ahead-the fax is not always turned on, email: bigoel@alltel.net.
Finally, there is a benefit being held TONIGHT at Anthony Middle School in Minneapolis from 5-8PM. Many people helped to organize this to help with bills and to get a great start on the foundationn we are in the process of establishing as a living memorial to Maddie. Again, I cannot begin to thank you all by name, but I must single out Linda Shay, Liz's mom. Linda came to me about 1 1/2 months ago with this idea and has worked tirelessly on the event since then. I know how much you love Maddie and our family, and that love is mutual. I consider you all as family.
Thank you all for your continued love and support. I feel Maddie's presence in every kind word and sweet action.
With love,
Julie
Friday, May 14, 2004 3:33 PM CDT Dear Folks,
This is Maddie's Grampa. I am writing to all of you hoping you can help me fulfill a promise I made to Maddie's spirit and to myself. I shall write Maddie's story. In order that I may do justice to this project I need each of you with any kind of input to communicate your thoughts and ideas to me. Please include any insights, impressions and other information about Maddie that can add to a complete Maddie story. I also desperately need any/all of Maddie's messages to you and/or to your loved ones. Obviously I do not request anything that you believe to be too personal for this endeavor.
I recognize that there are those among you have suffered through much of what Maddie, Julie, her family and friends have experienced during this past year. To the extent possible I shall make every effort to add as much universality to that phase of the story as I can.
Also, since this is a story of Maddie's life, much of what will be written preceeds the diagnosis and what followed. Therefore, those of you who have recollections of Maddie in her earlier years are asked to convey any/all that you are able to me. Remember that even the smallest of information can lead to a development that can add much to this effort.
Please convey all information to me:
Al Dornisch, 428 Lookout Ave., Ridgway, PA 15853; Phone: 1(814)772 5333; Fax: 1(814)772 5333 [Please Note: Call before faxing since we do not always have the fax activated.}; email: bigowl@alltel.net
Friday, May 7, 2004 7:17 AM CDT ********** MEMORIAL SERVICE ***********
Thursday, May 13 2004
12:00 noon
Bethlehem Lutheran Church
42nd & Lyndale Ave. S.
Visitation 1 hour prior to the service
and reception immediately following at the church.
***************************************
Hello to all,
As many of you have already heard, my sweet Madeline passed away yesterday evening at about 6:30 PM. She was lovingly surrounded by many in her family. It was a beautiful, peaceful, gentle and grace filled moment- exactly the way Maddie lived every second of her fourteen years.
I have imagined this event, feared it, fought it and anticipated it so many times over the past year. Never would I have believed that my heart could be filled with such enormous peace. (I know what many of you are thinking, "Oh, she is in shock right now- the magnitude of her loss has yet to really sink in.) I assure you all, I am not in denial here, and I will miss the physical presence of Maddie more than any words can ever describe. But, Maddie has set the tone here. She has let me know in word and action how peaceful and accepting- and actually how excited- she is to move on to this next, permanently blissful and healthy phase of life. Without giving up hope for a earthly healing, in her own words Maddie assured me that the outcome of this journey was either "Good or better." Good, if she was to be fully healed here on earth and could get on with her fourteen year old life, and obviously better if she was rewarded with total healing in heaven. She went on to say that whichever the outcome, she knew that it would be the right one for her- and because we love her as much as we do, we would have to believe that it the right one for us, too.
This journal and guestbook meant the world to Maddie over the past year. She was able to share so much of herself and her journey with so many. I am so proud of the way that she made it her own, and I can tell you now how awkward it felt to me when I started to update for her. I couldn't post last evening- not because of my grief, but because I wanted my words to at least be a faint replica of the power and love that Maddie exuded every time she took to the keyboard. I was hoping for some profound words, or some symbolic story to come to me to share with you all. Instead I awoke today with the idea that I should write exactly as Maddie would- straight from the heart.
Maddie aspired to be a teacher. Her true love of learning was cemented the very first day of kindergarten, and her career path chosen. We converted an entire room of our house to accomodate the "schoolroom" from which she taught virtually every moment for several years. Many times throughout this year it struck me that she has already achieved her goal and is the greatest teacher I will ever know. I am so happy that I told her this many times. I will draw great strength from the many wonderful conversations and experiences Maddie and I have shared.
In true Maddie fashion, we had an impromtu party here last night. Several people stopped over- many without knowledge of her death, but intending another visit with her- and the joy, sadness, laughter and stories we were able to share is exactly what Maddie would have wanted. Max, Dannie, Austin and Liz stayed the night and we had a slumber party(or should I say no slumber party) in the family room- a room filled with more love than I can describe.
I could go on and on. I will close for now by saying THANK YOU to everyone for continuing to love and support us throughout this journey. We are so happy to share this with you all. We will post information once plans have been formulated.
With great love and gratitude,
Julie and Maddie
Tuesday, April 27, 2004 12:16 AM CDT ***NEW UPDATE (but, as requested, the essay will remain on the page!!! and in response to the numerous questions regarding printing the essay, go right ahead! it's printer safe!)***
Hello everyone,
Today I thought I would share with you a story, written by Maddie as an english assignment back on January 20, 2004.
I sat in a cold room waiting. The walls were grey with a border on them. As the clock ticked, the walls seemed to close in on me. My growing anticipation filled each corner of the room. Come on. I thought. I want to go home.
The door opened and in walked two women. One woman spoke and introduced herself. The other woman sat next to us with a white look on her face.
“We found the cause of your headaches. We believe they are caused by a brain tumor; a fairly large mass.”
The words all ran together from where. A brain tumor? Me? Why?
I can’t say I believed the doctor when she told me. It was only certain words and actions that confirmed this was not a dream; survival rates, treatment plans, neurological tests, tears. The shock was so great and yet the feeling of fear was so present.
A throbbing pain in my throat and chest developed. I wanted to burst open and scream as if I were a firework on the fourth of July. My mom, who sat next to me, wrapped her arm around me tightly. The couch we sat on suddenly felt small. I began to sweat and that ball in my throat grew.
My legs shook like a toddler taking their first steps. My mother’s arm turned purple as I grasped it in my sweating palms for support.
From then on, it was like running a marathon. Appointments every day, pills every hour, needles and pokes every week, and fear and anxiety every second of every day.
I tried my hardest to be strong and calm, trying to act like I was fine, like I was healthy, like I was normal. I knew in order for everyone around me to be comfortable, I had to be. So I gave it a try, for my family, for my friends, for my doctors, my classmates, my teachers, for my own sake.
Soon enough, I’d forgotten my fear. I had gotten so wrapped up in masking it that I was almost a foreign visitor to my own emotions.
A few weeks passed until I was reminded why I was ever scared. I had been napping when I woke up gasping for air.
“Mom!” I tried yelling. Nothing came out. “Mom!” I fought through my coughing. I heard footsteps quickly moving on the floor, the floorboards creaking with every step.
“Maddie, are you okay?” my mom asked.
It hurt so much. Every time I inhaled, it felt like a rock grew in my stomach. When I’d exhale, it felt like the rock exploded into a million pieces, slamming throughout my entire stomach.
I recall waking in an ambulance. “Pontine glioma,” everyone around me was whispering. The same pain was still present. Oww, make it stop. I remember saying, or maybe it was just a thought.
My mind was rolling with “what ifs” and “how abouts”. On the outside, I remained calm and unbelievably tolerant. I knew in order to get better; I possibly had to get worse. I rested in comfort knowing that everyone around me was doing everything they could to help me. With a smile on my face and all that pain inside me, I felt a warmness. I was alright. Everything would be okay. I was the winner, not this brain tumor. It had no right to be in my body. I win.
From then on, I no longer had to mask my fear. It no longer existed. I knew from that point on that whatever happens, happens. We can only fight for what is ours. We can’t rewind time, we can’t erase chapters in our lives, we just have to live them.
It is in this spirit that Maddie and her family and friends will continue to fight on.
With love,
Julie and Maddie
Monday, May 3
***Hello Everyone! A quick update from Maddie's big sister, Ashley.
(this is my first time writing a journal update and, yes, i know, mine will not be nearly as profound as Maddie's... hard act to follow! bear with me!)
Yet another weekend has passed us by. Like Max has stated, "Oh my gosh! Is it really that late already! This place is like a black hole!" Okay, "black hole" has some negative connotations, but the time DOES just seem to go around here, but in a good way! We (Maddie, Mom, and I) spent our entire weekend on the "love couch." For those of you who are unfamiliar with the "love couch," I am referring to the new furniture arrangement in our back room. We have pushed our loveseat up agaisnt our long couch so that Mom and I can sleep right next to Maddie. It's nice and cozy, and reminds me a bit of the giant bed in Charlie and the Chocolate Factory with ALL the grandparents in it. Although Mom and Maddie and I never left the couch, we had multiple guests visit the "love couch." Keegan and Rich paid a visit to enjoy the Timberwolves game with us Friday night. Keegan took the game VERY seriously, watching VERY intently. Looks like his intensity paid off! GO WOLVES!
Maddie spent her weekend resting up, surrounded by lots of family and friends. She spent a lot of time Naked!By Naked! i mean that she has found a new favorite smoothie made by a brand called Naked! The bottle claims a whole pound of fruit in a single bottle! Hmm...that's a lot of fruit! As I said to Mom before, "How do they get all that fruit in SUCH a small bottle?!?"
OH MY GOODNESS! I CAN'T BELIEVE I ALMOST FORGOT!!! You will be all happy to know that Maddie's History Day group, having advanced to the State level, made it onto the second round and received honorable mention!!! Congrats to Dannie, Amanda, Maddie, and Liz!
Sunday, April 25, 2004 11:26 AM CDT Julie and Maddie updating again. Maddie is making me do most of the work, but I have asked her for at least one thing that she wants to say to all of you, and that one thing is... "My mom is SO annoying right now!!!"(no offense taken- I LOVE to see her humor and sarcasm- let's me know that Maddie is alive and well!!!)
We have personal messages for two of our favorite people-
HAPPY BIRTHDAY, TERRELL!!!! We wish you were here to celebrate with all of us. Have a fantastic day!!!
Thank you, Julianna Banana!!! Maddie received a wonderful surprise from you yesterday- a card filled with your beautiful pink wishing bracelets!!! She has claimed three of them-"love", "hope", and of course, "Julianna". Maddie will share the others with some of her family and closest friends. We will think of you and all the wonderful friendships that have come out of this yucky illness. It is true, every cloud really does have a silver lining.
Maddie's challenges remain the same as I have previously posted. The good news is that no new symptoms have shown up and she is more herself when she is awake(although her waking time is still limited). She has been engaging more in conversation, has been playing cards, and I have seen some genuine smiles in the last few days- something that I haven't seen in awhile. Awake or asleep, I love every moment with her. Keegan climbs all over her, giving hugs and kisses. Charlotte's first stop upon arriving home is always to check on Maddie and to say, "I love you." Ashley calls several times a day from New York to check in. It is so obvious how much my children love each other, and they are so capable of demonstrating that love. I am so proud of all four of them!!!
Ashley has had an incredible time in New York- I am so glad that she went and had fun, and am looking forward to my now 17 year old's return tomorrow. We missed you, Ashley!!!
Charlotte's team lost both games yesterday, and we haven't yet heard how they did today. Although I was unable to attend the games, I have been told that they really did play quite well. It's just the first tournament of the season, and I am sure they will continue to improve with each practice and every game.
Our family and friends continue to love and support us without fail. We are so fortunate to have you all in our lives. Your prayers, dinners, helping to transport ChaChi, cleaning, Keegan duty... You have been so helpful, and think of things that I didn't even know I needed!!!!
The start of a new week means daily visits with Chunyi. He has arranged his schedule to spend even more time working with Maddie. We love him and are so appreciative of all he does on our behalf.
Thanks for checking in on us.
With love and gratitude,
Julie and Maddie
Thursday, April 22, 2004 4:27 PM CDT Hello to all,
It's Julie, Maddie's mom, updating today.
Maddie is resting comfortably right now. She had an awesome visit with Chunyi Lin this morning, and we look forward to seeing him again tomorrow. He has made some additional suggestions for Maddie's treatment, and we are so thankful for his direction and optimism as we continue working toward Maddie's recovery. Maddie loves Chunyi and I know his calm approach and genuine affection toward her has influenced Maddie's attitude greatly. We are coming up on a year since diagnosis next week and Chunyi has been with us since the very first week. I cannot thank him enough.
Thank you to all of you who celebrated Maddie's TV debut with us on Tuesday night. Whether you were physically here with us, or here with us in spirit, we appreciate your continued love and support. It was also wonderful to know that friends and family across the US were hosting viewing parties simultaneously with us!!! We had about 50 people at our house to watch- too many to thank by name, but your presence, the food contributed and flowers given... thank you, thank you, THANK YOU!!!!!!!!!!!!!!!!!
Grandma Carol left last night to go back to PA- we miss her already, and appreciate ALL her help!!!! I know she was torn about leaving, but Grandpa Al really misses her when she's gone.
Ashley left last night on a bus trip to New York with the school dance/choir/band classes. 24 hours on a bus?!?! I hope she has a great trip... really... wish I was making that trip... really. In all seriousness, she, too, struggled with leaving. I am so glad that she was able to go. Maddie told her she should go, and really meant it. Ashley will have the opportunity to take a dance class, see a Broadway show, go to some museums... have a blast... and will be celebrating her 17th birthday there tomorrow. Happy Birthday, Ashley- have fun, and know how much we love you!!!
Keegan and Charlotte are doing well. Keegan remains an absolute bundle of energy. He loves to play outside every waking moment. Thank you to everyone who helps with him- I appreciate it and I KNOW he loves you for it!!!! Charlotte is an awesome soccer player and plays on a team that trains year-round. All that hard work is about to be put into practice this weekend when they tackle their first tournament. I hope to be in attendance for some of her games- I really enjoy watching her- and yes, you can call me a "Soccer Mom". I can hoot and holler with the best of 'em. Thank goodness my kids put up with my "enthusiasm".
The days have been filled with visits from many friends- your creativity, generosity and flexibility is awesome. Again, too many names to list- and I don't want to forget anyone- thanks to all, near and far, who continue the journey with us. We have always had an open door policy and it feels right to continue this way. Whether she is wide awake, fast asleep, or somewhere in between, Maddie has always enjoyed lots of activity. I know she is being energized, both physically and emotionally, from all the love that your visits and well wishes bring.
With love,
Julie and Maddie
Monday, April 19, 2004 6:41 PM CDT Hello to everyone!!!!
It's Julie, Maddie's mom, updating again. I know many of you check in frequently, so I will try to post every few days.
Maddie is spending much of her days resting/sleeping as of late. As stated previously, her eyes and short term memory are two of her biggest challenges. In addition to that, this increased fatigue is significant and she is much quieter these days. Even so, Maddie continues to communicate a strong faith and a sincere peace and calm. While I miss much of the activity that was so familiar, I am so happy to really KNOW how comfortable she is. We continue with those things which have been the cornerstone of Maddie's well care throughout this past year- Prayer, regular visits with Chunyi Lin, Maddie's Qigong healer, and Protocel, the nontoxic treatment with which many have had successes nothing short of miraculous. We will stay this positive course and invite you all to continue with us- your prayers and support are greatly appreciated.
This past weekend was yet another that reflected how blessed we are with loving friends and family. Grandma Carol is still here from PA. She and Aunt Tricia are doing a fantastic job of organizing the house, cooking, cleaning and distracting Keegan. Keegan spends EVERY waking moment outside playing, so Aunt Sara has logged plenty of her own hours running after him, too. Saturday, our friend, Terrell, spent the entire day with our family. He flew in from San Francisco late Friday, and had to return early Sunday. He gave our family his undivided attention the only day he had here- and I have to tell you, we are so grateful for his wonderful friendship. In addition to the obvious love and admiration he has for Maddie, he has taken a genuine interest in the whole family. When Maddie tired and needed to sleep, Terrell spent a great deal of time chatting with, and getting to know Ashley and Charlotte. Words cannot express how much his unwaivering support means. Rich took over dinner duty for the weekend- his meals are always yummy, and noone can argue with someone who is willing to grocery shop, cook it and clean everything up- Thanks, Rich!!! Dannie and Brittany were back again to spend the day with us yesterday. Brittany came again with a wonderful project- they made a mosaic platter for Maddie. She wasn't awake for much of it, but it will be a beautiful keepsake!!! Although Dannie was a bit of a slacker on the project(lol), her steadfast friendship demonstrates a maturity beyond her years- her love for Maddie is evident in every kind gesture, every sweet word- thanks, girls. On behalf of Maddie and myself, we love you.
Finally, Maddie's debut on HGTV is tomorrow. We are still inviting you all to come- just be prepared that Maddie MAY snooze through it all. Even so, I know she can feel the love that we constantly surround her with- and it is from that love that we draw our strength to continue the fight.
With love and appreciation,
Julie and Maddie
Friday, April 16, 2004 1:36 PM CDT Hello everyone!!!
It's Julie again, Maddie's mom. Maddie is within earshot of me and we thought we should collaborate on another update.
Before we get any further though, please check out the info typed above today's journal entry- it details the dates and times for you to view Maddie's prime time debut on the HGTV show, "Decorating Cents". We invite anyone who can to our house next Tuesday to watch along with us.
Since we last updated, Maddie's health has stayed much as I last posted. We continue working with Master Lin, Maddie's Qigong healer, as well as using Protocel. We also have an incredible faith in God, and know that Maddie could not be in better hands.
This week has been one filled with rest, family and a few wonderful surprises. If you have been following Maddie's updates, you may recall that she lost her coin purse some time ago. Well, it wasn't just any coin purse, it was a Loius Vuitton purse that our fiend, Jan, had given her. This week, a surprise arrived from Saks... instead of replacing the little coin purse, Jan chose to send a larger hand bag- much more difficult to misplace!!!!! Thanks, Jan, you brought a smile to Maddie's face!!!! The next day a large box arrived... Maddie's friend, Terrell, is due at our house for a visit tomorrow. As a little reminder of his upcoming visit, he sent a basket FILLED with the best candy and treats you could imagine!!! The note said to save some for him, but he'd better HURRY!!! On Tuesday, Maddie's friends, Liz and Brittany spent the day- Brittany brought over jean jackets and patches to decorate them with. What a fun project!!! Wednesday was Cree's turn- in addition to a picnic out on the front lawn, Cree did a great job running after Keegan!! Thanks, Cree!!! Thursday Maddie was stuck alone with me(sigh!!!). She and I did some scrapbooking together, which is always fun. Also, a preview copy of Tuesday's show arrived, and we just couldn't wait to see it- believe me, Maddie is adorable on the show!!! Today, Dannie, Austin and Cody are here. Family Feud, baking cupcakes and a failed effort on the pottery wheel provided the entertainment in between Maddie's naps. Thanks to our AWESOME friends and family for your continued love and support!!!!
The weekend is upon us, and I'm hoping Maddie feels well enough to enjoy all that comes with it!!! A visit from Terrell, Grandma Carol here from PA., and the regular fun and craziness that we know as life.
Thanks to all of you for your happy thoughts and prayers. Please remember to send those wonderful wishes to all our friends battling their own illnesses, as well as their families who need the support, too.
Oh, I almost forgot... Maddie's dear friend, Hanne, is performing the lead in her school's play, "The Wizard of Oz" this weekend. As the say, "Break a leg", Hanne!!! We love you!!!
With love,
Julie and Maddie
Sunday, April 11, 2004 11:49 AM CDT HAPPY EASTER TO YOU ALL!!!!!!
This is Julie, Maddie's mom, updating today.
First of all, if you check out above the journal entry, we have posted the dates and times to see Maddie's room transformation on the HGTV show, "Decorating Cents." We hope that those of you who can will join us for a viewing party detailed above. Maddie LOVES her new room, and we'd really like to thank Krista, Teresa, Jeff, Joan and all the wonderful people associated with the amazing makeover!!! You guys have been so kind!!!!!!!!!!!!!!!!!!!
This past week has been a equal balance of rest and time spent with family and friends. Thanks to Dannie, Austin, Liz, Brittany, Cindy Quehl and the entire Reynolds-Goetz family for all the fun and companionship you provided this week!!! Maddie, and our entire family, is truly blessed to have such a remarkable support system!!!!!!!!!!!!!!!!!!
On the health front things remain much as I have posted earlier. Maddie's biggest challenges remain her eyes(both double vision, and a very heavy left lid), her short term memory(which is pretty much nonexistent) and some increased fatigue. Even so, as has been her unwaivering approach, Maddie continues to live life in the most positive of ways. She has a sense of calm, faith and optimism that sets the tone for all who love her.
It is with great sadness that I share with you the death of our dear friend, Jake Griffin. It was through Jake's caringbridge page(www.caringbridge.org/page/jakegriffin) that we first learned about Protocel, the nontoxic treatment that Maddie is using. Jake had fantastic results with Protocel, but being such a little boy when he was diagnosed(just under 3), the radiation therapy that he needed to slow the tumor growth came with great risk of long term side effects. It was one of those effects- radiation necrosis- that was the cause of Jake's death. Even so, Jake had a wonderful life with his loving parents, Mark and Susan, for 2 1/2 more years after diagnosis. Jake's mom and I have become very dear friends. We speak almost daily, and up until very recently I would hear Jake's spunky voice and infectious giggle in the background. The obvious joy that Jake had for life climbed right through the telephone line and into my heart. The love and permanent bond he and his parents share is undeniable. The string that ties their family to mine is one that will last forever. My sadness is for my friends, Mark and Susan- Jake is the center of their universe, and they are now left with the challenge of going on through this life without the physical presence of Jake. "Jakey Bear", as his mom liked to call him, or "Big Jake", as he prefered to be called once reaching the "Big Boy" age of 5, has certainly joined the many other beautiful angels in heaven, where he can run, play, chat and giggle once again. He will remain in the hearts of so many of us until we, too, will join him for eternity.
With love,
Julie-Maddie's mom
Tuesday, April 6, 2004 3:51 PM CDT Hello everyone! Since my last update, I have pretty much been up to nothing. I've been ggetting a l ot of rest here at home and hanging out with Mom ad Keegan during the days. Exciting? Not really!
Other than that, I've been feeling pretty okay. I still lack the memory of a normal 14-year old. Radiation effects your short-term memory..but who needs that anyway?!
These past few days have all been spent at home resting. Somedays I feel well enough to get up and moving, other days I kind of just lay low. These days, my biggest problem is with my short-term memory. If that's my biggest problem though, I'll take it!
Well, that's all for now. Thanks for checking up on me!
Maddie
Sunday, April 4, 2004 7:09 PM CDT Hello everyone,
Thanks for checking up on me.
Mom's helping me with the update today. I'm being lazy and watching the women's final four games- Minnesota's up next against UConn... GO GOPHERS!!!!! Take it from here, mom...
We appreciate everyone checking in on Maddie, and thought you'd like an update. We put together a last minute spring break trip to Las Vegas- left on Monday and returned home Thursday. The travel group included me(mom), Maddie, Ashley, Charlotte, Ashley's boyfriend, Max and Maddie's best friend since kindergarten, Liz. As much as we love him(and missed him), it was a good decision to leave Keegan back with his daddy and Aunt Tricia taking care of him.
The trip started out well- when we got to the airport the ticket agent informed us we were in first class... OK, now we're talking. The flight was extremely comfortable- more leg room, better food and lots of attention!!! Our good luck continued upon arrival at our hotel in Vegas. We stayed at Mandalay Bay. They actually have 2 hotels, and unknowingly, we were booked in "The Hotel"- their 5 star hotel(absolutely beautiful!!!!). Max's mom also traveled to Vegas, and had a room at the Four Seasons right next door to us- and gorgeous hotel with a luxurious pool. This allowed us use of both pools. We quickly decided to choose luxury over the craziness of the pool at our hotel- how can you argue with people misting you with Evian, bringing ice-cold towels in the heat of the day, treating you to fresh orange slices.... as Max's mom put it, "Living in the lap of luxury!" I can't think of any kids more deserving of the pampering!!!
The girls' Uncle Paul drove from LA to meet us, too. It was great to see him, and it also allowed us to split up when needed. Our friend, Terrell, arranged for tickets to see "The Blue Man Group." Maddie was too pooped to go, so Paul took the other kids and Maddie and I stayed back, relaxed and ordered room service. All in all, it was a trip filled with great food, relaxation and fantastic kids!! I am one lucky mom and want to thank everyone who helped pull this together!!!
Maddie continues to do pretty well. As we have shared earlier, her eyes are funky- they have a hard time staying focused and her left lid is heavy. She uses a patch to help with this. Her short term memory is a problem- I'm sure a result of the radiation therapy, and she is more tired. Through all of this she remains my inspiration. Maddie stays incredibly positive and radiates a peace and grace that leaves me in awe. I am humbled every single day by the strength, love and generosity she exudes.
We will continue with the updates, and really appreciate all you prayers, support and love. Our good friend, Corinna, earned her angel wings yesterday. Corinna, her mom, Lorri and her dad, Russ stayed with us in Feb. We hold them close in our hearts and invite you to stop by Corinna's site to offer your support. www.caringbridge.org/wa/corinna9.
The Gopher game is calling...
Love,
Julie and Maddie
Tuesday, March 23, 2004 3:35 PM CST Hello, hello!!!
Thought I'd write and update you all on how I'm feeling and what I've been doing.
First off, I am feeling good. My short term memory isn't the best, and my eyes are kind of funky- my left lid is droopy and sometimes I get double vision. But overall I'd rate myself a "B+" in how I'm feeling.
It's hard to remember everything that I have been doing, but with mom's help, I'll try to recreate the past few days.
On Sunday, my mom, Sara and I went to paint more tiles for our ongoing project. Later that evening, mom, Ashley and I met the Reynolds-Goetz's at one of my favorite restaurants, Big Bowl, for dinner. While we were there we ran into my favorite former babysitter and "basketball STAR," Molly. It was nice to see you, Molly!!!
Yesterday, Charlotte wasn't feeling great, so she decided to stay home from school with me. We were joined by two of my best friends, Liz and Dannie. Mom took us all out to lunch and to a parking lot for another driving adventure. Everyone got a chance at the wheel, but I still reign as "Queen of the Wheel!!!!" The rest of the day was spent low-key... watching movies and catching up on what I've been missing at school.
I continue to work with Chunyi frequently. I saw him both yesterday and today, and will see him again on Thursday. Tomorrow he will be at the Mayo Clinic giving a talk. He continues to firmly believe that I am on the path to complete recovery. It's so wonderful to have Chunyi as part of my treatment.
Today was a restful day with lunch and a trip to the craft store thrown in. Aunt Tricia, Keegan, mom and I really know how to live it up!!! It's Tuesday, and any of you who know us well know what we'll be doing tonight........
AMERICAN IDOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I think mom is craziest of all of us about not missing that show!!!!
Tomorrow it's back to "Doin the Dishes" with about 30 of Ashley's classmates to paint more tiles!!!! Should be a party for anyone reading this who wants to play hooky!!!
Some of my friends and their families also are in need of your prayers... www.caringbridge.org/wa/corinna9, www.caringbridge.org/page/jakegriffin, www.caringbridge.org/pa/samspage. Stop by and leave them a note, it really does brighten all of our days to receive your messages!!!!
Thanks for continuing to check in on me. Your love and prayers are really appreciated!!!!
Maddie
Saturday, March 20, 2004 5:51 PM CST Hello to all friends and family!
After a few days, I'm feeling pretty darn good. Not AS great, but we'll take good!
I've been getting plenty of rest here at home. The other day my choir teacher Ms, Quehl, came over and took me out shopping. It was nice to get out of the house with her. I got a shirt and a hat for my Make a Wish Trip.
This week has been sepnt mostly in be resting. Our friend Cynthia stopped over yesterday and brought DVD galore along with a handheld DVD player, which will be lots of fun. She also brought us dinner yeterday. Thanks Cyn!
I haven't been feeling 100%, but I have been doing pretty well. I'm having a little trouble swallowing which isn't a good sign so keep me in your prayers!
Love,
Maddie
Tuesday, March 16, 2004 8:29 AM CST Wow! What a few days can do to you....amazing!!
Since my last update, I've been dragging around the house looking for my wallet...bad news, didn't find it. Instead, John, a classmate of mine showed up this morning at my house. He left an envelope. In the envelope were gift certificates galore! Thank you so much to Lori and John! That means so much to me.
I've been feeling pretty stressd out. At age 14, losing a wallet can be a pretty stressful situation ; ) ! But with the awesome friends and family I have, I don't miss that LV wallet or anything in it a bit!
I've been feeling pretty good otherwise.. I haven't been to much school but I have been doing pretty well. I have a great appetite, I have been out of the house plenty, yesterday Dannie and Liz skipped their morning classes and hung out with me. We went out to lunch and went bumperbowling! My school friends have been trying to get something arranged so someone is here with me most of the time. A rotating schedule or something so when I miss school, so does someone else and we get to hang out together! Thanks guys!
Today I see the healing touch therapist again. Last week after my appointment, my eyelid jumped wide open which we don't see it do alot, so that was exciting!
Other than that, today will be spent relaxing and taking it easy. I figure everyone needs some days like that.
Well, that's all. Thanks for checking up on me and thanks for keeping me in your thoughts and prayers!
I HAVE THE BEST FRIENDS AND FAMILY!
Maddie
Sunday, March 14, 2004 3:04 PM CST Sorry to keep you all waiting but I have been going, goin, going!
This weekend my cousins; Kyrie, Brennan, and a friend, Narrita, from Nebraska came up. We went to both Mall of America and SOuthdale, which were both fun. We went to my cousin's birthday party. Happy birthday Quinton!
Keegans been Mr. Sick of the weekend. It wasn't pretty. He had a few barfing on mommy times...some red face tired looks....and some smelly, watch-out pooopy diapers. None of that has been all that fun!
So I've gotten some shopping done for Make a Wish and spent some money. Though spending money is never a problem for me, hanging on to my wallet is! YEsterday while we were out, I missplaced my wallet along with about $300 worth of money and gift certificates in it! I just hate these kinds of days- going crazy looking for it...
Other than that, I've been feeling pretty well. I'm not as tired as before and Ihaven't had any headaches in quite some time. So that's good news!
Well just wanted to update real quick on my weekend! Thanks for checking up on me!
Maddie
Tuesday, March 9, 2004 1:35 PM CST Hello to all! JUst a quick update today!
This weekend was spent resting, scrapbooking, and all around relaxing! Just what I needed!
I've spent lots of time in my new room this weekend. I have added tons of pages to my scrapbook. I am still cathcing up in school, doing as much work as I can when I feel well enough. Movies are a must these days, so we've been renting tons of them. School of Rock, Duplex, Anger Management, They've all been a lot of fun in my sluggish days.
We've been to the tile-making shop three times this week! We have some great new tiles for our frame, so that's real exciting!
On Sunday, Ashley got home safetly from Argentina. THanks for all the prayers for her fun and safe trip. She had a blast! (oh and guess where we took her the night she got home...Doin' the Dishes!!)
Monday I had an appointment with the cranio@!#%$ (sorry don't know spelling) we've been seeing. That was very relaxing. From there, we took Keegan to the indoor park at Edinburough. He loved just running around and not having to worry about glass lamps and pointy edges. I got a nice workout chasing my BrotherBear around on my feet and on a scooter. Later we went out to dinner with our friend, Bonnie. (or maybe that was Mon/Sunday) THanks Bonnie!
Today we met with Tanya, a healing touch therapist. Some of our friends had been working with her and just love her. It felt good...mostly just relaxing. Afterwards, me, Mom and Keegan went out to Sidney's for lunch! Of course Keegan didn't make it throughout the morning without bonking his head. He has a huge bump on his eye that the pediatrician will love to question Mom about tomorrow!! =)!
THis afternoon I am going to have a massage. Other than that, there's not much going on with us these days. I try to get ready for school and go, but I just get too tired and headachy. SO until I feel GREAT, mom and I think it's best for me to just be comfortable.
Well, that's all for now! THanks for checking up--
Maddie
Saturday, March 6, 2004 2:31 PM CST Hello to all friends and family!
Since my last update, things have continued to go smoothly. I feel a little worn out again today, but kicking the butt of a diffuse intrinsic pontine glioma isn't easy!!! ;-)
Since my last update, I've spent some time pretty low-key. I haven't been to any school, but I did find out which highschool I will go to. Next year, I will be attending the SOuthwest International Baccalaureate program. I have recieved my acceptance letter and I couldn't be more proud!
This week, I have been taking things easy and catching up on my rest. Things have caught up with me and I'm not feelling 100%. Although, after getting somefresh air today and going to the craft store, I am feeling better.
Thursday Mom, Keegan, and I went out to lunch with Susan and Greta. Thanks Susan!
Thursday night I had a birthday party to go to. Dannie, a very good friend of mine, is 14! Happy Birthday, Dannie! And thanks for having me over!
Last night, Friday, Mom, Charlotte, Sara, and I went out and added a few tiles to our collection. We hahve been painting inspiring words on tiles, and they are beautiful hanging in a Decorating Sense-made frame. It was fun, although I forgot an "L" in "reflect". Oh well!
Today I woke up feeling real crumby and overall kind of sluggish. I got my blood moving when Liz came over and Sara took us to the craft store. NOw, I'm feeling better.
A scrapbook-watching movies-crafting-and-resting weekend is beginning and I am up for it all! Thanks for checking up on me-
Maddie
Monday, March 1, 2004 2:27 PM CST Hello Friends and Family!
Check out the picture of my new room by Decorating Cents. I'll let you know when the program is scheduled on TV!
Since, Wenesday, I've been Miss Busy Bee. On Thursday, I went to a full day of school with Charly, who was visiting from Montana. It felt good to be there, but took a lot out of me. After school, I walked to Mary's house with some friends. After a long day I came home and crashed!
On Friday I didn't make it to any school, but I was feeling pretty well. Instead, I spent the day in my new room resting
for a long night. Then, I went over to Cody's house with Mary, Charly and Liz and spent the night there. We played games, caught up, and had lots of fun! They all helped me by being Jr. Nurses and Doctors. We dosed Protocel and took all the right pills. How'd I do Mom??
Charly left on Saturday. It was nice to see you Charly! Grandma got back to PA early Thursday morning. Thanks for coming Grandma! And Ashley is having tons of fun in Buenos Aires, Argentina!!
Saturday evening was my room unveiling party. It was lots of fun! Afterwards I hit the hay for a long, peaceful rest!
Sunday was a low-key day. I scrapbooked and rested for the day. I went on some runs with Mom and Tricia as well. All around, it was a very relaxing day.
Today I'm out of school. We just returned from a Cranioalsacral appointment. It was my first time, and it was very relaxing. Thanks for the referal Aunt Liza!! Oh, and before the appointment, mom took me to an empty parking lot and gave me my first driving lesson!! She said I did very well- a "natural." Look out, here I come !!!
Well that's about all for now. Keegan's left a smelly present for Mommy, so it's about time to switch rooms!
Love,
Maddie
Wednesday, February 25, 2004 5:06 PM CST **************************************
NEWLY ADDED! PLEASE READ
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Party:
Where? 4441 Colfax Ave. S.
When? TOnight, Saturday the 25th?
TIme: 6:30 PM or later
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NEWLY ADDED PLEASe READ
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Dear Friends and Family,
The last couple days have gone well. Mom says I look better than I have in weeks. I feel well too. I haven't had any headaches return since the steriod push, so I'm thinking it was only swelling causing them.
Homeschooling hasn't really began yet. I've been in and out of school, hours at a time. I haven't been to a full day in sometime, but I plan to tackle one tomorrow. I don't think I'm missing too much so that's good. LIke Mom says, we rent good movies and we go out to good lunches...what 14year old wouldn't want that?!
I had a good appointment with CHunyi this morning. Grandma came along and got a feel for what Qi gong was all about.
Today, Mom and I took some of my friends and went to Christie's service. It was nice to see her family and some of our old friends. Throughout the entire service, there were times when I felt I could just break down and cry, but I didn't. Christie was there with all of us, and she didn't let me cry. It is her smile that's not here, not her optimism, her love for her family and friends, her will to go on.. That was all with me as I sat through the service. Thanks Christie, I needed some of that today! Join me in celebrating Christie's new beginning! www.caringbridge.org/mn/christie
Like always, something good came out of something bad. Charly, Christie's cousin and also a best friend of mine, is here from Montana for a few days. I got to see her today and tomorrow as well. Through these hard times Charly, know that I am here for you and all of us are as well! I love you!
Tomorrow, Ashley leaves for Buenos Aires, Argentina! She is going with some Spanish classmates and will be gone for two weeks! Have a great time Ashley! We all pray for a safe flight and a fun time!
Charlotte and Keegan are both great! Charlotte is occupying the telephone full time these days being Miss Busy Bee...then add instant messaging, soccer and movie dates, and she her schdedule is full! Keegan is pulling on me as I write. He's such a handfull these days, but such a joy. There is just something in those puppydog eyes of his that youo have to love!
Mom, Rich, Aunt Tricia, Aunt Sara, and all other 17 aunts ;) are doing well also! Mom is busy working the phones and mastering her computer skills gathering all sorts of treatment options. Rich is busy at work...Tricia wrapped up her coaching season last week and now, we can have her all to ourselves (hehe)... Sara and I continue our weekend shopping sprees... and everyone else is doing GREAT!!
Thanks for checking up on me! Love,
Maddie
PS Decorating Cents pictures to come!
Saturday, February 21, 2004 7:07 PM CST Hello to all friends and family! WHat long, fun-filled weekend I've had already!
Yesterday Corinna, her mom, Lorri, and her dad, Russ, had a lay over here in Minneapolis. They had been at Duke exploring treatment plans and they happened to fly through here. I was so happy to meet her and her wonderful parents. Corinna and I had fun talking, joking, swimming, and playing card games all day and night! It was so great to meet her. SHe is such a joy and I am proud that I can say I met her! www.caringbridge.org/wa/corinna9 . After a fun day, she flew out tonight. Thanks so much for coming Corinna!!
Last night, "Decorating Cents" finished my room. After a suspenseful couple of days with wandering thoughts about my new room, I was so excited to finally see it! It is awesome and it all was such a great experience! Deep thank you's go out to Krista, Joan, Tereasa, and all the others that helped participate in such a great deal! I love it! Next Saturday, February 28, we will be having a viewing party for anyone that wants to stop by and see the new room. I don't believe the tape will be ready et, but you will all love taking a look at the finished product! Details to come!
Since last week, I've been back on decadron, the steriod that can help take away the symptoms (headaches, nausea). We have also switched back to Protocel 23, which we are now taking 7 times a day. It's been a push with decadron, and a slide on Protocel...a perfect combination to feel a little better, just very tired! Then add in the packed week and weekend and I am one tired girl tonight! We hope to tinker off the steriods in the next few days. If the symptoms disapear, it was probably just swelling from Protocel 50, and if they don't it could be something else. But, I'm going with the first choice.
I also had two more surprise guests this weekend! Grandma Carol came in from Pennsylvania! I was so excited to see her. Thanks for letting her out of your sight for a week, Grandpa. We love it when Grandma comes! ALso, Marsha, the University of Illinios women's assis. bball coach came and visited for a night. THanks for coming Marsha! I had a nice time at lunch. So, double thumbs up on the visitors for this weekend!
On another note, I got some terrible news last night. Christie, a caringbridge friend, who has been battling leuekemia, left us last night to go be with the Lord. Christie, wherever you are, please know that I send my deepest thank you's to you. You showed us all what a true champion is, and I am so grateful that I can be called your friend. Save a spot for us all up there. You deserve the best! www.caringbridge.org/mn/christie . Please keep her wonderful family in your thoughts and prayers through these hard times.
Thank you for checking up on me. It's been a roller coaster of a week. I haven't made it to school, but I am pretty sure we are getting a plan in place for a more stress-free school environment. Tonight, I'm going to get some much needed rest and get settled back into things. Prayers and wishes,
Maddie
Tuesday, February 17, 2004 1:57 PM CST Hi everyone! It's been a long morning and I'm looking foward to updating you all on.
A few days ago I finished power dosing. We went back down to 1/4 of a tsp. 5 times a day (we were going 4 times a day before power dosing) to not give this tumor any chance to get back on its legs. But I wasn't feeling great, and we decided it was more important to give my body a break. So now we are dosing 4 times a day 1/4 tsp.
This morning I woke up feeling like crap. My stomach hurt, I was having headaches, and all around it stunk! I think I have been lysing a bit...email me for details... It could just be that all this Protocel inside me is finally getting to me.
For the past 6 weeks, I've been having spells of double vision. This is where one eye will kind of freeze and the other will continue to move.The exophitic compontent of my tumor (the part that extends from the pons region) is in a place that is critical to my vision. So, growth could be causing this...but also could swelling, radiation damage, or just being in Algebra and Advanced English where you have to read so much! After getting there at 11:15, and leaving at 1:40, we both agreed it was a LONG DAY!
Yesterday we had the day off of school due to President's Day. I haven't close-to-perfect attendence these last couple weeks, so me and MOm plan on talking to the school conselour and figuring something out. Whether it be just not coming to school, or coming when I'm 100 here, or Mom homeschooling me a bit, we are not sure. But we have both decided rest and health is more important than school!
I'm planning to rest up for my big weekend! I have Decorating Cents coming to redecorate my room, and also Corinna ocmine to visit! I am so exccited so I have to make sure I feel well! www.caringbridge.org/wa/corinna9
I talked to my friend Cheyenne last weekend. She is doing very well- she's had a confirming MRI- and she still has double vision! Me and Cheyenne are a lot alike, so if you like me (hehe) you'll like her! Visit it her sire at www.caringbridge.org/tx/cheyenne5
Love,
Maddie
Thursday, February 12, 2004 6:00 PM CST Hi to all friends an family!
Since we've started this "power dosing" there has been a little change here and there, not as much as we were expecting. The first few days that I was power dosing, symptoms actually seemed to disappear. But we were pretty sure it would hit us, and we were right on. I missed school yesterday and came home early today. I've been having hot spells, nausea, and some headaches and double vision. After tonight, we will go down to 5 times a day for 2 weeks and then back up to power dosing.
We saw Chunyi on Wednesday, and as always he sees great things for me. He did a test and he believes that I may have a symptomatic winter, but as spring and summer roll around, I will be a normal, healthy 14 year old going off to high school! Yeah!
I have a big week for me, so I have to hurry up and feel better! Next THursday and Friday, I will be getting my room redesigned by "Decorating Cents with Joan Stephen". I am so excited and can't wait to see the finished product. I will tell you when it will air once I know more.
Also, next Friday, my newest Caringbridge friend, Corinna, will be staying with us. Corinna and I have the same diagnosis and instantly struck a friendship. We have been corresponding through the internet and phone, and I am so excited to see her! Corinna, her mom, and her dad have a lay over here in MN and fly out late Saturday. We look foward to seeing her! www.caringbridge.org/wa/corinna9
Also, Christie is off the vent! Yeah! She is still in a dazed place, as the morphine hasn't yet worn off. Please keep her in you prayers thoughout these next weeks. www.caringbridge.org/mn/christie
Well, that's about it! Love,
Maddie
Sunday, February 8, 2004 6:14 PM CST Hello, hello! This weekend has been a low-key weekend, catching up on well-deserved rest. It's been a pajama weekend for me!
Since the scan, my mom has spoken to tons of people. Elonna (www.elonnamckibben.com) told my mom of a treatment that she did. She took Protocel 50 7 times a day for 5 days. And then went back to regular dosing for 2 weeks. Then 7 times a day for 5 days, and went back to normal dosing. Her cancer was gone within 3 months...
So, we're going from 4 times a day to 7 times a day for 5 days. We started two nights ago. I call it "Protocel power dosing". Elonna says she was flat on her back for those 5 days, feeling yucky, but getting all of that crap out of her body. If this is what will get that horrible beast out of my body, then I'll do ANYTHING! So far, I've felt great, but am starting to feel pretty tired all of the sudden.
Today I ask you to pray for little Katia. Katia just got her bone marrow transplant earlier this week. Congrats and happy "birthday" Katia! She is such a sweety...www.caringbridge.org/fl/katia_leukemiapage
I don't know if I'll feel well enough to update these next few days, so I wanted to make sure and get one in.
With love and blessings,
Maddie
Friday, February 6, 2004 7:27 PM CST Hello to everyone! I've had a long day, and I'm glad to be getting it off my chest.
This week, my mom schduled an MRI. They were able to get us in today and we took it. We didn't want all those pre-MRI jitters, so we chose to keep our desicion quiet. At 1:30, I was busted out of school.
We first stopped over at the Abbott Oncolgy Radiation Unit. After saying hello to Julie, Mark, and all the other great staff, we headed over to Children's to have a neurlogical check and just a meeting with Dr. Bendel.
At 3:30, we headed down to the MRI, and waited until about 4:30. The scan took about an hour, and I did very well. Afterwards, I rummaged up a few snacks from a vending machine while waiting for results from Dr. Bendel. We haven't gotten the Radiologist's Report yet, but we got an outline of what Dr. Bendel saw. She said that it was stable, no real change, nothing bad, nothing great. At first, she mentioned the part that extends beyond my pons (exophitic) enhanced more, showing either tumor activity, inflammation, or radiation effects. But after comparing it to my previous scans, it appeared to be a collapsed cyst. Either way, it didn't really effect Dr. Bendel's whole sum of it. She sees it as stable. Stable. Stable. And after 10 months of a diffuse intrinsic pontine glioma, that's great news!
Of course I was hoping for great change, but I'll take stable for now. I'm not going to lie, I am disappointed, but if I could have a "stable" tumor for the rest of my life, I'd sign up today! There are some people out there, that get bad news every single day for months and recover. This isn't "bad" news but I know that I can recover as well.
After the MRI, I was reflecting on this whole journey. Today, I sat in the same diagnostic chair as I did on April 28 and I didn't have that same feeling in my gut. I know I'm going to be fine, and I didn't think I'd be then.
So, here I go, another day, a new day, a fresh one. Smile is on my face, my winning attitude is back in my head, so here I go!
With love,
Maddie
Wednesday, February 4, 2004 6:53 PM CST Hello to all! I hope you're all having good weeks!
On Saturday, Mom, Sara, Charlotte, Keegan, and I went shopping. It was nice to get out and get some fresh air and move around a bit. On Saturday night, Mom and I watched "Bend it Like Beckham" and "Bringin' Down the House". Both were very cute and made us laugh, just what we needed. But headches, neckaches, double vision, and tiredness increased. On Sunday night I got all my homework together and laid an outfit out. I got in the car and was driving to school but when it was time to get out, I just couldn't go. Too tired, too achy, so it was another homeday. Keegan, Mom, and I ended up going out to Target. I bought valentines gifts for some of my friends. I ended up feeling a lot better.
Early Tuesday morning, we had a visit with Chunyi; just to see what he thought was going on inside my head. He sees no blockage in the brain, but some in the neck. He touched a spot to show my mom where the blockage was, and it hurt sooo much, I scooted out of his reach. Chunyi Lin is amazing. From there, I hurried to school to take the MBST's...Minnesota Basic Standard Test. As stressed out I was with everything else, Ms.Quehl, my choir teacher and also a good friend, let me take it in her room without any other students. So, that was much more comfortable. Thanks Ms. Quehl!
Today I had a good, full day at school. I got my semester grades and guess how I did!? All A's and At's, thank you very much!
Make-A-Wish called, and they unfortuantly cannot grant my #1 wish, going to Atlantis in the Paradise Islands, in the month of March, which is when my spring break is. We cannot miss a ton of school with all of our conflicting schedules, so I am probably going to make another wish or wait until this summer. Any ideas?
This week has been an up and down week; emotionally, physically, and mentally. Every day, families are faced with these "cancer" desicions they should never have to make. What treatments to do, when to scan, how to react to surprising results or new symptoms. But, as Chunyi says, whatever happens, happens, whatever doesn't happen, doesn't happen. So we just keep on chugging along. Whatever comes along, we fight through it. Whatever doesn't come along, we don't fight. We just keep on keeping on.
Today I ask you to pray for Corinna. Corinna is my latest friend. She is such a cool kid, and I encourage you to go to her site - www.caringbridge.org/wa/corinna9 -.
With love,
Maddie
Saturday, January 31, 2004 9:39 AM CST Hi to everyone!
Wednesday I was at school the whole day. I got some double vision, but the student teachers in Choir let me lay low in there for a few hours.
Thursday and Friday I stayed home with Mom and Keegan. On Thursday, I just needed a break. I felt good, but I needed a day to just stay in my pajamas and lay around. Liz and Dannie, being the great frinds that they are, took the morning off and spent it with me. So we had a pretend snow day, playing games, watching 'Finding Nemo', eating. It was lots of fun. Thanks Linda and Eileen for allowing Liz and Dannie to come over! On Thursday night I laid all my clothes out and got all my homework together, but on Friday morning when I woke up, I had some more double vision and headaches. We called Chunyi and he still says all blockages are clear in my head, so it must be that PROTOCEL 50!! Friday night me, Mom, RIch, Aunt Tricia, and Keegan went out for Chinese at 'Rainbow'.
We are still making plans for today. I haven't been out of the house much these last few days, so that may be first on my list.
A few days ago, McKenzie earned her angel wings and is now up in heaven zooming through the clouds with Harris, Marissa, Julia, Maddie J, and all the other angels. Rest in peace McKenzie! www.caringbridge.org/wv/mckenzie
Have a good weekend! With love,
Maddie
Monday, January 26, 2004 12:21 AM CST Aww! How the weekends pass and suddenly I find myself back in school!
This weekend was a real low-key one. I spent time resting and fighting a bad cold along with some Protocel "funkiness". It was just what I needed!
Today we hoped for a snow day but instead woke up early for school. Today I'm feeling real tired so Ms. Quehl is given me a break and I'm sitting out of choir. Thanks Ms.Quehl!
I ask you to pray for Christie. She is in Intensive Care with some kind of lung fungus. Please visit your site if you have a free second- www.caringbridge.org/mn/christie.
Just a quick update today, I'll try to get to journaling a little more frequently! ; )
With love,
Maddie
Monday, January 19, 2004 5:01 PM CST Just a quick journal asking for your prayers for Christie. Christie received her bone marrow transplant on Sept. 11th but this last week was readmitted for the 5th time. She has an infection in her lungs and is on oxygen and several antibiotics. Please, whenever you have a spare moment, say a quick prayer for our dear friend Christie. Thank you.
Saturday, January 17, 2004 10:26 AM CST
Do I have a lot to update on today, or what?! The birthday was a success and I'm feeling like a million dollars!
Yesterday morning, Suprise #2 was unveiled. Mom dropped us off at Target Headquarters with Aunt Alyce. "So, what is this surprise?" I asked Alyce. "Well, we are going to see someone perform," she answered. We kept walking and then I saw a sign that said -Ruben Studdard- . Nothing really clicked until she actually confirmed it. We were going to see the American Idol perform! My aunt signaled to someone and before I knew it we were backstage getting an autographed CD and photo poster. Plus, they were both made out to me! We watched him sing with about four feet in between us. I thought that if I reached my hand out, I'd be sure to touch something ;)....What a teddy bear. THanks Alyce.
The party began and there were tons of people in and out. Thank you to everyone that came and an extra thanks to everyone that brought cards and gifts. The party was three thumbs up :) and was a night that I am sure to remember. Thank you for everyone that had something to do with it and to all of you that couldn't make it, you were with us in spirit. I had a fun time celebrating with loved ones, and strangers. Aunt ALyce then came over with a scrapbook. In it were all different letters and pictures from all of you. It is so dear to me and I will have so much fun looking back in it in 20, 30 years. To everyone that contributed to this, a warm thank you from the bottom of my heart. To those of you that didn't you can still send them or email them. I cherish each one and I am so lucky to have friends and family like youa ll!
This birthday was for sure a different birthday than I've had ever before. It wasn't looked at like just another year, but being thirteen was something I'll never forget. I was faced with so many challenges, pain, joy, so many changing friendships, and a changing person myself. Thank you to all of you that helped remind me of my year through your letters. Sometimes I forget how fortunate I am, how fortunate others are, And we'll complain and talk about how this boy turned you down, or how you don't have enough clothes. In the skeme of things, just ask yourself if all your stresses are really something to get stressed over. I think that if I can get just one person to think this way, I will have do so much more than I could probably ever do. People are people. They are not perfect. Everyone has problems and everyone has challenges. But, some challenges just aren't worth creating. So live you life and cherish all that you have. Remember what not to get worked up about. And count each day as a blessing. Because each day someone lives is truly a miracle!
Jan is here until Sunday morning. What a loving women she is. Thanks so much for visiting Jan! You are the most caring surprise of them all!! www.caringbridge.org/fl/harris
With love,
Maddie
Saturday, January 17, 2004 10:26 AM CST Do I have a lot to update on today, or what?! The birthday was a success and I'm feeling like a million dollars!
Yesterday morning, Suprise #2 was unveiled. Mom dropped us off at Target Headquarters with Aunt Alyce. "So, what is this surprise?" I asked Alyce. "Well, we are going to see someone perform," she answered. We kept walking and then I saw a sign that said -Ruben Studdard- . Nothing really clicked until she actually confirmed it. We were going to see the American Idol perform! My aunt signaled to someone and before I knew it we were backstage getting an autographed CD and photo poster. Plus, they were both made out to me! We watched him sing with about four feet in between us. I thought that if I reached my hand out, I'd be sure to touch something ;)....What a teddy bear. THanks Alyce.
The party began and there were tons of people in and out. Thank you to everyone that came and an extra thanks to everyone that brought cards and gifts. The party was three thumbs up :) and was a night that I am sure to remember. Thank you for everyone that had something to do with it and to all of you that couldn't make it, you were with us in spirit. I had a fun time celebrating with loved ones, and strangers. Aunt ALyce then came over with a scrapbook. In it were all different letters and pictures from all of you. It is so dear to me and I will have so much fun looking back in it in 20, 30 years. To everyone that contributed to this, a warm thank you from the bottom of my heart. To those of you that didn't you can still send them or email them. I cherish each one and I am so lucky to have friends and family like youa ll!
This birthday was for sure a different birthday than I've had ever before. It wasn't looked at like just another year, but being thirteen was something I'll never forget. I was faced with so many challenges, pain, joy, so many changing friendships, and a changing person myself. Thank you to all of you that helped remind me of my year through your letters. Sometimes I forget how fortunate I am, how fortunate others are, And we'll complain and talk about how this boy turned you down, or how you don't have enough clothes. In the skeme of things, just ask yourself if all your stresses are really something to get stressed over. I think that if I can get just one person to think this way, I will have do so much more than I could probably ever do. People are people. They are not perfect. Everyone has problems and everyone has challenges. But, some challenges just aren't worth creating. So live you life and cherish all that you have. Remember what not to get worked up about. And count each day as a blessing. Because each day someone lives is truly a miracle!
Jan is here until Sunday morning. What a loving women she is. Thanks so much for visiting Jan! You are the most caring surprise of them all!! www.caringbridge.org/fl/harris
With love,
Maddie
Wednesday, January 14, 2004 5:38 PM CST Wow! A week of surprises still rolling...
Last night, my first surprise was revealed...All the way from Miami, Jan (Angel Harris' Mom), came to visit me! We stayed up sharing stories of everything and anything. She is such a sweet woman. So much love and strength from one woman, she's amazing. Not only did I get a feel for who she is, but I now have a real image of the sweet and brave boy that her son, Harris, was and is. Please keep his wonderful mother and father in your thoughts and prayers through these hard times. At www.caringbridge.org/fl/harris , you can get a feel for his spunky attitude.
Today, I got out of school early to go to the Mall of America! The Illinois women's basketball team has kind of adopted me, and they are playing the Gophers tomorrow. I have a Choir Concert tomorrow though, and will not be able to see them play. So, I met up with Marsha,(assistant coach), Coach Grentz(head coach), and the rest of the Illinois pack. Mom, Jan, and Keegan came also, so Jan got a taste of the MOA.
Now, we're back home and waiting for the next event. Tonight, I'm supposed to meet up with the team again for dinner at Buca. Tomorrow night, I have a Choir Concert, and then on Friday no school AND the party!
Where? 4441 Colfax Ave. So.
When? Friday the 16th, at 6pm
If you need the directions, call 6128237933 or email Mom at juliedornisch@yahoo.com
Thanks for checking in on me. The guestbook entries are greatly appreciated, if you sign once or a thousand times! The cards, and birthday gifts are also very much enjoyed by the whole family! Take care,
Maddie
Monday, January 12, 2004 7:29 PM CST Hi Everyone!
Wow! Another weekend has already gone by.
On Friday I babysat with my friend, Hanne. It was nice to see her after it being so long. It was a lot of fun. I got a headache and got tired, and before too long, I was back home going to bed. Saturday I went to St. Thomas' womens game. They won. Good job Tommies! Afterwards I went to run a few errands with AUnt Tricia and then out to dinner at Big Bowl with my family and friend, Liz. That night Liz slept over and we were up until 2am. The next morning I had a massage. On Sunday it all caught up with me and I was back in bed resting, and fighting the bug that's going around. I felt pretty BLAH!
This morning I slept in and went to school late. I felt good all around and afterwards, I was treated with a massage. Thanks Liza!
Only two more days left this week. Then comes a four day weekend! Yeah! Plus, Mom and my sisters have surprises planned for the whole week. I can't wait!
Friday is my 14th birthday and we will be having a party!
Where:Maddie's house 4441 Colfax Ave. S. Minneapolis 55409
When:Friday the 16th.
Time: 6pm
If you need directions, call 6128237933 or email my mom at juliedornisch@yahoo.com. Thanks!
I hope to see EVERYONE here! Thanks for checking in on me and thank you for all of the birthday cards, and presents I've been getting. They all are greatly appreciated.
Today I ask you to visit Katia's site. Katia is waiting for her bone marrow transplant but there has been a new delay. When doing scans preparing for the BMT, they noticed something on her lungs. This morning, Katia had lung surgery to biopsy what was growing. Hopefully it is just fungus on both lungs and that they can go on with what is planned and do the transplant by the end of this month. Please stop by her site: www.caringbridge.org/fl/katia_leukemiapage and wish her the best in beating this stinkin' leukemia!
Love,
Maddie
Thursday, January 8, 2004 8:44 AM CST Hey Everyone! Quick update before I'm off to school.
This past couple days I've had some double vision for the first time. It was real scary. I got taken out of school to work with Chunyi. After working with him, he sees no blockage in my head, but a blockage in my neck. He believes the car accident may effect my neck and when I move it, I may be pinching a nerve. We'll go with that and Protocel lysing!
That's really the only medical news. Thanks for checking in on me!
Today I ask you to pray for Madisen's family. Maddie became an angel after a long and hard fight. Her website is www.caringbridge.org/mn/maddiej
Next week, January 16, is my birthday! We'll be having a party that night for anyone that wants to come. Thanks!
Well, that's all for now! Love,
Maddie
Monday, January 5, 2004 6:16 PM CST I had another great weekend. Just a low-key one, but a fun one!
I was definitly noticing nausea this weekend. I had a few headaches. But mostly an hour after I've taken Protocel 50. We aren't worried about them, because they are so routine after Protocel. Hopefully, that's whats causing them. We've also noticed lysing, so that's a good sign.
Today, I'm mostly updating with both good and bad news about my other Caringbridge friends:
Julianna, a little girl who has ALL, has relapsed. Julianna Banana is not only as cute as you can get, but her site is a funny one. Please visit her site at www.caringbridge.org/canada/julianna . She is sure a sweety and needs all the prayers she can get.
Go Chunyi, it's your birthday, we're gonna party like JAKE GRIFFIN! Since Jake's nnot-so-good MRI, he's begun to work with CHunyi. It just so happens that he is doing great today, using his left side, walking, and jumping like a normal guy! As everyone saw, Big Jake is about to be the next 50 cent! Visit him at www.caringbridge.org/page/jakegriffin.
Thanks for taking the time to check in on my and an extra thanks to everyone that has been signing the guestbook. An extra extra thank you to those of you who have been linking off to all my friends. I really appreciate that.
Love,
Maddie
Friday, January 2, 2004 2:38 PM CST Friends and family,
I have had a great 2 weeks off of school and truthfully, am not excited about going back! ; )!
The day before New Year's Eve, two volunteers from the Make a Wish foundation came to interview me about my wishes. They brought presents for my siblings and I. My number one wish is to go to Atlantis in the Bahamas and stay in Paradise Island hotel, whish is where "Holiday in the Sun" was filmed. My second choice was Disneyworld. According to all my Caringbridge friends who have taken this trip, it is a very fun and memorable one. My last wish that had to be a nontrip wish was to sink into my own hottub in these cold Minnesota winters. Thanks so much Make a Wish! I can hardly wait!
Thank you all for all the well wishes for the New Year. My family was lucky enough to take in the new year with our friend Kelly and other close family. All in all, the night was pretty fun.
New Year's Day me and Mom went to visit Aunt Sue in the hospital. My Aunt Sue had a brain tumor as a child and has lived mentally challenged, but fairly healthy, ever since. The doctors predicted their may be something wrong with her shunt. They were even throwing around the idea of emergency brain surgery. After an MRI and many blood tests, we were able to throw out all the serious possiblilites. Sue went home from the hospital yesterday and is back to her normal self. Our first day of the New Year was a blessed day for sure! Keep her in your prayers over the next few days.
Today Mom, Chachi, Aunt Sara, Keegan, and I went to Doin' the Dishes. This is a place where you can paint your own ceramics and they can glaze them in the kilm. My family and friends are working on tiles for my room. We're not sure what we are going to do with the tiles yet, but we have been painting tiles with words of inspiration on them. It's been a really fun project. After we met our old babysitter, Molly, and Aunt Tricia at Champps for lunch. It was real nice catching up with Molly. Thanks For lunch Tricia!
Well, that's about it for now. Today I ask you to pray for Celeste. I had the pleasure of speaking to her Mom and Dad yesterday for a short time. Celeste has the same diagnosis as me and would love to hear from you. www.caringbridge.org/pa/celeste
Again, thank you for checking on me and thank you for linking off to my Caringbridge friends. It means a lot to them.
Happy New Year! Count your blessings everyday and remember what's really important in life,
Maddie
Tuesday, December 30, 2003 7:45 PM CST Happy New Year to all!
This week has been full of fun and creating lasting memories.
My Aunt Paula and cousins headed back to Omaha after a fun time had by all. We shared lots of laughs. We don't see them that often so it was nice to see them! Kyrie is still the sweetest 3rd grader around. Brennan can make anyone laugh. And Cam, well you have the best voice of all! Thanks for sharing your week with us!
Grandma and Grandpa safely made it back to Pennsylvania. 18 hours in a car. As predicted, Grandma and Grandpa put smiles on all of our faces. It was a great week for family.
Well everyone had to go back home, and so did one of my best friends, Charly. She spent most of the week at our house visiting from Bozeman, Montana. It was real nice to hang out with her. Thanks for coming!
Last week we almost had to put down our dog, Thatcher. She was sick as a dog...hehe. She ended up returning from the vet with pancreatitis (or something like that). I was very sad with the whole concept. Thatcher is a nice dog and everything, but I wasn't sad about my dog dying, but just about imagining a parent having to deal with the loss of their son or daughter. Or a brother or sister dealing with the loss of their sibling. Or a son or daughter dealing with the loss of the parent. You can truly not even imagine the "death" of someone you love without really actually being in that position. There's no way.
On the 27, Max passed away after a hard battle to AML. Please join me in praying to lift his family with the support and love they need at this terrible time. www.caringbridge.org/mn/madams
Christie was readmitted at 4 am this morning due to flu-like symptoms. Her counts have dropped again as well. After a great visit with her cousin Charly, Christie also tripped and fell on the stairs. Please pray for her to be out of the hospital as soon as possible and back to her normal self! www.caringbridge.org/mn/christie
Thanks! Have a great New Year celebration,
Maddie
P.S. We are having a party tomorrow night. Join us if you do not have any plans. We'd love to see you all here! 4441 Colfax Ave. S. Minneapolis
Friday, December 26, 2003 7:28 PM CST Dear Friends and Family,
The Christmas holiday has passed, but is still stuck in my head. We had a wonderful Christmas Eve, along with a great Christmas Day. Christmas Eve Day we went to an event that my uncle threw. Actually, he literally did throw it! For the grandchildren's gifts, he tossed about $600 worth of coins and let us go for it. We all pretty much got equal amounts. It was an "interesting" game, but a fun one!
Afterwards we came back home and went to mass. After church my moms family came over and we opened presents. I got a digital camera and photo printer, some scrapbooking gear, and some clothing. It was lots of fun. Christmas morning we woke up and opened gifts from Mom, Rich, and Santa. I got a foot and back massager, clothes, a new coat, and more. And the fun didn't stop there. We went out to the Paguyo's to open gifts from my dad's family. I got some more scrapbooking gear, a purse, money, a frame, and more. We came back to have Christmas dinner.
At about nine o'clock, my friend, Charly, from Montana came over. I haven't seen her for about 6 months so it was real nice! She spent the night and we hung out like she'd never even left.
Today, my cousins and Aunt got in from Omaha. We've been hanging out today, catching up, that kind of stuff.
So, I have pretty much summed this week up. Love, presents, family, caroling, eating, laughs, entertainment, and health! Oh and did I forgot no school?! I've had a few doses so we've been tinkering with the dosing still. Me and Mom also think I'm entering another "Protocel funk" because we're seeing lots of lysing.
TOday I ask you to pray for the families of all the precious Caringbridge children who have become angels recently. It's been a hard year for many Caringbridge families. Keep praying for everyone fighting these horrendous battles.
With love,
Maddie
Saturday, December 20, 2003 11:49 AM CST Hi everyone! WOw! Two whole weeks of break! Yeah! Merry Christmas! Feliz navidad! Happy Chanuka! Happy Kwanza! Happy New year!
This week went really well. On Wednesday we had an appointment with Chunyi. OUr appointments with him always go very well, and this one wasn't any different. I felt great after working with him and have been going strong ever since.
On Thursday I went to clinic to get my flu shot. We happened to see my primary oncologist in the waiting room and she was very pleased to see how I was doing. I toughed out my flu shot with my friend Cody beside me and Mom didn't even have to see it! Thursday night we were pleased to see my Grandma Carol and Grandpa Al. They drove all the way from Pennsylvania with their whole car filled with gifts! We love it when Grandma and Grandpa come. Not only do we get Gramma's homemade cooking every night, but we get Grandpa's sarcastic jokes!
On Friday I went to the Mega Party at school. We had to sell a certain amount of items off our fundraiser to attend this. There were blow up slides, wrestling rings, obstacle courses and jumpers! It was pretty fun, but I left a little early to go hang out in Ms. Quehl's choir class.
Last night me and my friend Austin went to our friend, Liz's basketball game. Liz did really well but her team ended up loosing. I got to see Liz's grandma and grandpa, aunt, and cousin also, so that was a real treat. Afterwards, all three of us went over to our friend, Dannie's house and slept over. There were like 5 other girls over also, so it was lots of fun.
Today we are celebrating my mom's 25th birthday ( ; ! We are getting together with the Goetz's tonight for dinner and celebration! I can hardly wait! Tomorrow is her real birthday, so make sure to leave her a message in the guestbook!
I can hardly wait for Christmas. Family, friends, food, gifts! Yeah! This year though, its not about the presesnts, its about the love and tha laughter that we are blessed to share with our wonderful family and amazing friends. Thanks so much to all of you for making this holiday season truly special!
New Year's won't go uncelebated at this house! We are having a party! Come for dinner and partying! My mom has a phobia of driving on New Year's Eve, so if you share this, she says you are more than welcome to stay the night! RSVP in my guestbook! The more the merrier, the merrier, the better!
Well, that's about all for now. I'll make sure to journal right after Christmas, if not before. I had a complaint from my Grandpa Al that I don't journal enough. So i'll try to more often. Don't forget though, I check up on the guestbook everyday, sometimes more than once a day, so if you can, leave a message! I'd love to hear from you or just even know that you stopped by!
Love,
Maddie
P.S. This year mom, we weren't sure what to get you. Here's some of your present though:
Mom I want to tell you, how much you mean to me,
How lucky I am to have you,
And how much it's you that I need.
Since that cold day in Januray, I started on my way,
You never left my side,
You were with me day by day.
The scare at the end of April, brought tears to my eyes,
We both cried together,
And you told me you knew I'd be fine.
You told me you'd protect me, you told me it was worth a big try,
You said that as long as you were my mom,
That you wouldn't just let my spirit die.
You pushed me to be the person who I am,
I'd agree that I'm a masterpiece,
And I owe it all to you mom.
So on your birthday, I wish you laughter and delight,
Happiness and joy,
On this very special night!
This year have lots of fun, let your energy pound,
So what? You're not old yet!
You're the youngest 30 year old around!
Sunday, December 14, 2003 9:53 AM CST Hi everyone! Just a quick update about my week!
School has been going really well. I talked to my counsler and he is all for cutting homeroom off my grades, which would take a lot off of me! This week, I was honored to attend Mortan's Steakhouse with 23 of my schoolmates to meet Wally Szerbiac and his agent, Eric. It was lots of fun and for lunch, steak! Nothing can beat getting out of school to eat steak ;) !!
This week we met with a lady that did some muscle testing. She tested me on everything I'm taking right now, including Protocel 50 (I'm taking Protocel 23). I tested way better with Protocel 50. My mom and I have been getting a feeling that I should probably be on 50 also. Since then, my mom has been working the line, talking to people about which formula they thought. We've made the switch and it's my 5th day on it and so far, so good. I've had a few headaches and some nausea so we're still tinkering with dosing.
On Friday I got out of school early to go to the practice of St. Thomas Women Bball, the team Tricia coaches. After practice, the team and I did crafts! Everyone made something or other. It was lots of fun!
We've been clearing our Christmas lists over here. Mom and Keegan have been busy shopping and cleaning. We're all real excited, and spent the day yesterday holiday shopping. I worked on my science project for awhile and slept in today, if you can call 9am sleeping in! Today I am riding the bus with Tricia's team up to St. Cloud to see the game. My friend, Liz, is coming with so we should have lots of fun!
Lots of people to pray for today!
Christie is doing great and in REMISSION still! Yeah! Stop here- www.caringbridge.org/mn/christie - and say congrats!
Cheyenne has also switched to Formula 50. She's doing great also, but has some classmates that don't get it! Log onto her site - www.caringbridge.org/tx/cheyenne5 !
Jake had a not so good MRI but is still my Protocel DPG hero! www.caringbridge.org/page/jakegriffin
Haley is a new friend of mine! She is so beautiful inside and outside. www.caringbridge.org/nv/haley
Well, this quick update is turning into a long one! Continue to pray for not only me, but all my Caringbridge friends! Thanks!
Love,
Maddie
P.S. Remember to clear your calander for New Years! We're having a party! Make sure to leave a note saying that you can come in the guestbook! Thanks!
Sunday, December 7, 2003 8:21 PM CST Hey everyone. Another weekend has passed me by! Eighteen more days until Christmas! Other than hitting my head on the refrigerator and being left with a huge bump on it, I'm feeling great!
Well this weekend was another lowkey one. It was another family weekend (they're not so bad, Mom). We watched a few Christmas movies, went to Aunt Tricia's basketball game (she's the coach for St. Thomas' womens basketball team), and hung out. Today me and Hanne went to "Love Actually". It was really good! Other than that, I've worked on a my science project. The topic is "Alternatives vs. Conventional therapy in treating cancer". Oh, and Tricia's team won! Go Tommies!
Eighteen days until Christmas means 24 days until New Years Eve. Over here at 4441 Colfax, we are planning a party and inviting all of you to attend! So if you don't have plans already, put it on your calendars! We'd love to see you here.
Today I ask you to pray for April. April stopped by and left me with a message in my guestbook, and brightened my day with a new friend. Stop by her website -www.caringbridge.org/tx/aprilnicolehuff- and leave her a message! Thanks!
Again, I want to thank everyone who come and leaves messages to me via my guestbook and email. It means the world to me knowing that you all are so involved in my recovery. I check the website every day, so if this is your first time visiting, or your thousandth, make sure to sign, even if it's just to let me know you've stopped by! You have no idea how much it means to me! Thanks you, thank you, thank you!!
Maddie
Wednesday, December 3, 2003 9:18 AM CST Hi everyone! What an awesome week so far!
We finished off the weekend with a lttie shopping, and a little sledding. It was a great Saturday and Sunday.
As I told you last time, my school choir tried out for a gig at the Ordway (for any of you that don't know what the Ordway is, it is a beautiful theater that not most 13 year olds get to perform at). Well, we got the chance to perform with an a capella band, Ball in the House (www.ballinthehouse.com). They came to our school on Monday and rehearsed with us for two hours. They were all really cool guys and we all learned a lot from them Yesterday, Ms. Quehl (our director) was for sure a brave soul yesterday. She took 45 of us on a field trip from 9:30 am to 10:00pm! At 7, we performed for over 1,100 people. Thanks so much Ms. QUehl! It was a lot of fun!
This morning I had an early appointment with Chunyi. It went very well, but my body has caught up with me and I am zonked! I have a dentist appointment later today, but I probably will take the whole day off.
Today I ask you to pray for my friend, Jake. Jake and his parents have been so helpful the whole way through our Protocel experience. With the same diagnosis as me, Jake is 2 years out. He had an MRI last Tuesday that wasn't exactly what we were all predicting; It said growth. MRIs aren't always 100 ccurate, and we know Jake will be just fine. His story is truly a miracle, and the miracle doesn't end here! Please, visit his website and leave him and his parents some encouragement, www.caringbridge.org/page/jakegriffin !
Thanks, and have a great day,
Maddie Paguyo
Thursday, November 27, 2003 11:01 AM CST Hi everyone! Just a quick little update before I get caught up in the Thanksgiving holiday.
I'm feeling great! We had an appointment at clinic on Tuesday. We saw a doctor who we all really like. She supports me in every way and is really interested in everything that I am doing-- something most doctors are not. She said she could find NO neurelogical thing wrong with me! Yeah! We're still debating when to do an MRI and when to get this port taken out.
As far as this week went, my school choir tried out for a gig at the Ordway, and we got it! It was a great two day week. My friends Austin, Kaija, Liz and Grayce came over Tuesday night. We worked on more cards and took Keegan sledding for the first time! It was a lot of fun. We packed in a lot of sledding in the last couple days though, so I am sore! FYI: WINTER IS NOT MY FAVORITE SEASON...
Last night I babysat BrotherBear, Keegan, who turns one today! HAppppppppy Birthhhdayyy Keeeeegan! I remember last year when my sisters on our friends went down to the hospital and waited for little Keegan to be born. Ashley and her friends watched the actual birth, but me and Chach checked out for that one. Whenever people look at pictures of all 4 of us, they see 3 dark skinned, dark haired girls, and this light skinned light haired boy!! He doesn't match our tones the best, but he sure has fit into this family well! Busy as can be, funny as can be...even a bit naughty! I love you Bubba!
Have yourself a merry THanksgiving! Remember to give thanks for everything that matters to you today!
Maddie
Saturday, November 22, 2003 10:38 AM CST Hi everybody! Thanksgiving is sneaking up on us, and boy!, do we have a lot to be thankful for here at 4441 Colfax!
This week went well. I missed two days of school but was able to get caught up with everything. This week was a low key week in both school and at home, just what I needed to recover from my cold. I'm feeling much better today.
Last night, all of my friends already had plans, so Mom and Rich took me, Chach, her friend Allison, and Keegan to "Cat in the Hat". It was really cute. For a PG movie, I'd say it's not really for little kids. But it was real funny!
As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call that you get from your spouse every day. For all the loved ones that you hold close in your heart. Even for your messy
house that you hve to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking you for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have showed me how to be thankful, and what to be thankful for. So this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same.
This week there are a few special things going on with my
pontine glioma family. Celeste, www.caringbridge.org/pa/celeste, is having an MRI done today. Since meeting Celeste, I've shared a close bond with not only her, but her family. So today, pray for not only Celeste and her MRI, but her family as well. ALso, Jake, who holds nothing than extreme hope in our eyes (and a few laughs hearing about his days at school), is having an MRI this next week. He is the one who we found Protocel from, and we owe a lot to his Mom, Susan, and Big Jake. Please join us in praying extra hard for him in the days to come. www.caringbridge.org/page/jakegriffin
Thanks--and I mean THANKS,
Maddie
P.S. I also just read Christie's update (www.caringbridge.org/mn/christie) and she is doing great with 100 onor cells engrafted and 100 n REMISSION! Yeah!
Wednesday, November 19, 2003 5:35 PM CST Hey everyone! My grades have been recieved..drum roll please....three A's, three A+'s and only one D...
Monday and Tuesday I was home with Mom and Keegan with a cold. I was pretty congested and had a sore throat, so I played hooky and relaxed at home in a warm cozy bed. I'm feeling much better today, after working with Chunyi this morning. I was back at school today, as strong and healthy as ever! Chunyi says that I am doing great still! I'll see him again in two weeks.
Okay, If I fooled you the first time, my report card has only A's and A+'s. Like I told Mom, this last quarter was the hardest that I ever had to work for grades like these, both mentally, physically and emotionally. I have always passed, but this time around, I passed with flying colors-- and real hard work too!
Today I ask you to pray for my friend Sam. I met Sam at the Protocel picnic, and let me tell you- he is a tornado of giggles and strength and you MUST check his page out-- www.caringbridge.org/pa/samspage --. Thanks! Also, keep those supportive cards coming. I am putting a package together for Angel Harris's family and need all the cards that I can get! Not only would his family appreciate it, but I really would also. Thank you. (4441 Colfax Ave. S. Minneapolis, MN 55409)
Love,
Maddie
Sunday, November 16, 2003 6:57 PM CST * If you don't see the new background, click on your refresh button*
Hi! Other than a cold, I'm feeling great! Ready to start a new week? I am definetly not and have no idea how Mom will pry me out of bed to go to school tomorrow! :)
On Saturday, me and Mom attended Chunyi's, Spring Forest Qigong meeting. There were hundreds of people there. Some people looking to teach, some looking to help, others just looking to learn. Our friends Hanne, Susan, Sara (www.caringbridge.org/mn/sarajohnson), and her sisters Amy and Lisa all joined us and later our friends Denny and Sara's daughter, Rachel came too. The day went something like this-- We had a few lectures, both from Chunyi and from other people affilliated with SFQ. We did a couple group meditations that Chunyi walked around in and heal for the time span of about an hour. We also learned a 6 syllable chant that we did as a group (Ong, Ma, Li, Be, Me, Hong). The group of about 300-400 people focused some time on those who were suffering from cancer or other severe problems. Sara, Denny and I all got to go to the front of everyone and had some special attention and healing. Hanne and I had a private healing with Jim, another healer. The meeting was both Saturday and Sunday, but we only went on Saturday. We had a great lunch and an all in all a really fun and informing day!
Since it was at a hotel, I was really looking to foward to staying over, going swimming, ordering room service, all the other things that hotels bring... So I gathered a few friends and made a plan! Well at the last minute, the two I invited got sick and one remebered she already had plans. "Okay," we thought, "that's okay, there's other things for me and Mom to do, right?" With our swimsuits we walked down to the pool to find out that it had closed ten minutes earlier! "Well, this stinks but let's go call Ashley, Aunt Sara and Sahar and see what they're doing." Yeah! We called them and they're bringing down card-making things and maybe a few games. Oops, when they showed up they forgot those things! AHHH! They ended on coming back with them later, but ironically I'd already fallen asleep...What a night! Thanks so much Mom for cheering me up. Whenever we ran into another dead end, she always had another idea!
Ashley ended up staying over and Mom made us both laugh when she started putting on puppet shows with the free soap they gave us over the ledge in our room. We still did order room service, and actually got a real good sleep in without Keegan there to wake us up!
This morning when passing by the room of the convention, Jim (the healer I worked with) stopped her and told her that he sees my energy in a much better place then before. He also told her that working with me is such a gift for him and that he never experiences the effects of working w/ me with anybody else.
Ashley, Mom and I met Sahar and Sara at the hotel restaurant. We had a really good breakfast and a whole lot of laughs. We managed to sneak a few chocolate covered strawberries out of the buffet with many giggles..!!
Later today, Mom took Ashley and I back to the Hyatt for another session with Jim. Again he expressed the positive things he sees happening in me. Tonight I've kind of blown off my homework and will catch up tomorrow. I've been so relaxed this weekend that I can't start getting stressed out with homework!
Today I ask you to scoot on over to Haley's website-- www.caringbridge.org/nv/haley--. She is one cute girl and deserves all the prayers, thoughts, and Caringbridge messages as she can get! I have another friend, Isaac, who has a similar tumor as me. Go and check him and his brother Lucas out at www.caringbridge.org/wa/isaac !! If you can't sign them both today, sign one today and save one for tomorrow. Not only would they appreciate it, but I would too!
Thanks! Have a great week!
Maddie
P.S. Today is my Auntie Tricia's 29th birthday ;) - please join me in wishing her the happiest birthday ever!!!
Friday, November 14, 2003 4:34 PM CST Hey everyone! I'm doing great and I made it through an entire week!
This week has gone well. A little bug has passed through the house but other than that, nothing much has been going on. I began to get a sore throat a few days ago but today, I'm feeling much better.
Someone asked if I wasn't doing well because I wasn't updating as frequent. Actually, it's the complete opposite! I'm doing so well and living such a normal life that sometimes I loose track of how often I update. I do check the guestbook though, everyday, sometimes even two or three times a day. So make sure to leave a message!
Today I ask you to pray for the coolest Dylan I know. Dylan is a real trooper and has been fighting real hard now for quite some time. His website is www.caringbridge.org/page/dylansworld.
If you are able to, please send a card to me for the family of Harris. Harris passed away last week and I am putting something together for his family. (4441 Colfax Ave. S. Minneapolis, MN 55409) If you are unable to either make or buy a card, write a note in his guestbook-- (www.caringbridge.org/fl/harris)
Thanks!
Love,
Maddie
Monday, November 10, 2003 5:16 PM CST Hi everyone! I had a low-key, but fun weekend. I did a lot of resting, just what I needed!
This morning I had a phone appointment with Beth, a medical intuitive who picks up on my energy over the phone by asking me questions. My readings were a lot better than when she took them in May. A healthy person would have their readings up in the 50's and almost all of mine were in the 30's-40's :)!!
Today I ask you to continue praying for Harris's family. If you can, take a few minutes out of your day and send me (4441 Colfax Ave. So. Minneapolis, MN 55409) a card for his family. I am putting together something and need all the supportive cards as I can get. Thanks.
Today is "Daddy Richy's" birthday! I got a little idea from Julianna Banana's site...because today Rich is 48! hehe ;).... Thanks Rich for everything that you do for me and the family. Face it though, Susan is kinda right, sometimes you do look like a baby in those jeans! Just kidding! Hope you have a great year..
Love,
Maddie
Friday, November 7, 2003 4:53 PM CST Hi everyone. Another week down.
Well I didn't win the election, but that's okay.
On Wednesday I had another great appointment with Chunyi. We'll be seeing him every other Wednesday now. It was a really early morning however, and I ended up staying home from school. Thursday I tried going to school but I came home about 2 hours into it. Me and Mom think it's another "Protocel funk". Today I woke up feeling great and went to a full day.
On Wednesday we lost my Sizzling Green Pepper aka Harris. He left peacefully and without pain. Please visit his website --www.caringbridge.org/fl/harris-- and leave a supporting message for his family. Please join me in supporting his family at this time and send a card for his family to me (4441 Colfax Ave. So. Minneapolis, MN 55409) and I will foward them all. Thank you.
Maddie
Sunday, November 2, 2003 12:37 AM CST Hi everyone! I've had a great weekend so far, and I still have two more days of it!
**********NEW PICTURES******************
Wednesday we had a meeting with Chunyi. He had both good and bad news. The good news is that he sees no more blockages in me and he thinks he only needs to see me once every other week. The bad news is we won't get to see him and the family every Wednesday anymore! Me and Mom agreed that there are people that need his healing more than us right now but that we'd drive out there every week just to say hi to everyone and maybe even catch some of their home's energy. After this Wednesday's appointment, we'll have a standing every other week appointment.
Thursday was school elections. We'll find out who got elected on Tuesday, because we don't have school on Monday.
Friday we dressed Keegan up in a mini Mariachi costume. When Ashley went to Mexico last year, she brought home a costume that included a vest, pants, jacket, and hat. We put him in that and Mom painted a little mustashe on his face. Me and Ashley dressed up in our other Mexican costumes and took him to a few houses. Afterwards Liz and Dannie came over for awhile. All around, it was a fun night.
Yesterday day, we ran some errands. Then, I went to Liz and Amanda's Halloween party. All my friends were there. It was a lot of fun. I left kinda early because I was pretty zonked.
Today Maury came over to get some information about Protocel. Maury has had Prostate cancer for 10 years. We sent him home with a little Protocel for a test he was doing. Please keep him in your prayers. Right now, I'm about to go to lunch at Asia.
Today I ask you to visit Katia's website. She is such a sweety and is waiting for a BMT. If you can, go on over and leave her an encouraging message. www.caringbridge.org/fl/katia_leukemiapage
Thanks!
Maddie
Tuesday, October 28, 2003 5:02 PM CST Hi everyone! I hope everyone has gotten off to a good start this week like me!
Other than a cold that has passed through 4/5 of my family, I've had a pretty good couple of days. Nothing interesting has really been going on with me. This week is school elections and I'm running for Vice President so hopefully that will go well. Tomorrow our team is going on a field trip to Fort Snelling. It's going to be VERY cold so hopefully I won't get any sicker than I already am!
Here's a quick update on the rest of the family!
Charlotte has just ended her fall soccer season and is soon already beginning her winter season. She has really gotten good and she's pretty intimidating around the house (she's threating to beat me in soccer. But I'm not THAT dumb to actually play her...)! She loves the new school, mostly because she gets to be with me all the time. She's just recovering from a cold but isas "Chachi" as ever!!
Ashley is starting her junior year at Southwest IB. Last night she was up all night making signs for me and the campaign. Thanks Ash! She continues to grow in her skills of football (hehe) and is well prepared for the "Powder Puff Football game" next Spring. She hasn't yet caught the bug but I gotta say, no one can live in this house without catching a cold that someone else has! By the way, fellows, Ashley is currently on the market. So, feel free to give her a call!
Keegan (or BrotherBear) is such a sweety these days. He has mastered walking and is now working on our 13 stairs! YIKES! He is just recovering from a cold but is just as lovable! Every night he gives everyone a kiss and every morning, a smile. On Thanksgiving, Keegan turns one! If anyone is planning on sending anything to him, please make EVERYTHING (should be something his big sisters enjoy) out to me! Hehe. Just kidding.
Mom still has a cold, unfortunatly. She's been up the last two nights with Keegan since they both aren't feeling that great. She's still the hero of our house-- running around for each one of us, helping with homework, cooking dinner, cleaning, AND assisting others in their own battles. I think we've limited her computer and phone time that has anything to do with Protocel or other cancer conversation down to about....4 hours every day!
Well, that's about all I have to update today. Please visualize Harris home and out of the hospital for Halloween!! Abra-cadabra Hocus-Pokus...KIZZAM! Sizzling Green Pepper is home! Hehe! Visit his site if you can: www.caringbridge.org/fl/harris! Thanks! Remember, Christie is out of the hospital so if you can, leave her a message too! www.caringbridge.org/mn/christie
Talk to you later,
Maddie
Saturday, October 25, 2003 9:31 PM CDT Hi everyone! I've had a great weekend so far, and my energy has been strong!
On Friday, Charlotte had a Halloween party. My cousins, Brennan and Kyrie also suprised us for a couple of hours. It was real nice to see them. She had lots of fun with all of her friends, and to admit it, so did I! Liz came over and made it more fun. We spent the night at Aunt Tricia's. This morning me, Liz, and Tricia went out to breakfast and then began to film my very own tape that we'll be sending to the University of Illinois Women's Basketball team who have "adopted" me. We got some good clips and look foward to putting the finishing touches on it so we can get it sent.
Afterwards, I spent the rest of the day with my friend Hanne, and her family. We went to the movie School of Rock. It was okay, kind of goofy though. After, we all went out to dinner at the Big Bowl. I had a very good time. Thanks Goetzs/Reynolds!
More to celebrate! This week my cousin Cameron and Grandpa Al celebrate their birthdays! Cam turned 15 years old and Grandpa turned 29! Hehe! Hope you guys have great birthdays that bring all your birthday wishes!!
And there's more...Sara has started Protocel!! Yeah! We all are so glad to hear this great news. Soon, she'll be on the other side of it all helping others with their journeys with Protocel! www.caringbridge.org/mn/sarajohnson
Well that's all for today!
Maddie
Wednesday, October 22, 2003 6:23 PM CDT Hey everyone! I've started out a fresh, and new week and already have a lot to update you on.
School has been going well. I'm beginning to find time for both homework and Caringbridge work, and it's balancing out pretty good. The homework load isn't as heavy, or maybe I'm just getting used to it...
This morning I had a great appointment with Chunyi.He only has good news to report about what he feels is going on inside me.
In fact, last Friday I had an MRI scheduled and I decided against it. I'm doing so well, and I don't need some scan to tell me that, or some dumb doctor to lie to me about it like she did last time. I think some extra time won't do any harm..it can only do good.
I know I've told you once, but this is important enough to tell you again: CHRISTIE is OUT of the hospital! Yeah! www.caringbridge.org/mn/christie
Also, this cutie, Julianna Banana, stopped by my website the other day. She is a very advanced author for her age (hehe) and I'm picking up that she likes pink..and may be looking for older men. But, hey, what do I know? Hehe. Visit her site and leave her a message-- www.caringbridge.org/canada/julianna --
Well, Thanks for checking up on me and my friends!! Lotsa Love,
Maddie
Sunday, October 19, 2003 6:49 PM CDT Hey! I had another great weekend filled with family and friends.
As you know, my grandma Carol visited this weekend. She's already on her way back tomorrow but we had lots of fun. On Saturday me, Mom, Rich, Dad, Ashley, and Keegan went on a picnic. We played football, enjoyed the weather, and had lots of fun! Saturday night, Rich, Mom, Ashley, and I got dressed up and went out to dinenr at Chino Latino. We ran into Aunt Sara, Guaylon, and Sahar and had a really fun night. Today, sure enough, we were back up again and on the run. Mom, Rich, Charlotte, my friend Austin, and I, took Keegan to his first time at the zoo! It was lots of fun. Keegan loved seeing the fish and dolphins in person. He's addicted to his Baby Einstien video "Baby Dolittle". We had a great day in the beautiful sunshine. This weekend was a very good one. Good weather, good celebrations, good friends and family. They all equal good times!
On Thursday, I was happy to see Sara and her daughter, Anna at my Protocel party. This weekend they are away at their cabin. GO over to her website-- www.caringbridge.org/mn/sarajohnson -- and wish her well!!
Thanks! Love,
Maddie
P.S.
Hope you had a happy birthday Austin! Thanks so much for being such a great friend!
Saturday, October 18, 2003 12:07 AM CDT Family and Friends,
Hey! What a HUGE success the party was! 100 days of Protocel was celebrated on Thursday evening and boy, did I have a good time! I mean love, support, and pizza?! Who couldn't have had fun? I was surrounded by all my great friends and family. We played games, sang karaoke, ate, talked, and laughed! It was lots and lots of fun and I'd like to thank everyone that came. I'd also like to thank my mom for putting this all together, and my friends who rewarded me with a presents, and those who congratulated me with love. ALl around, I'd like to thank everyone!
And for some more good news, CHRISTIE IS OUT OF THE HOSPITAL! After 7 weeks, Christie is back home and sleeping in her own bed. YEAH! Way to go Christie! Visit her website-- www.caringbridge.org/mn/christie --and congratulate her!
Well, the sun is shining and I'm off to start another day! Cya!
Maddie
Thursday, October 16, 2003 2:48 PM CDT 100 days and counting! Time for a party...
(That means that I have drank that gross stuff more than 5000 times! You've gotta give me some credit)
Saturday, October 11, 2003 8:58 AM CDT PARTY*PARTY*PARTY*PARTY*PARTY*PARTY*
NEXT THURSDAY, OCT.16, MARKS 1OO DAYS USING PROTOCEL, AND WE'RE HAVING A 100 DAY PARTY TO CELEBRATE!!! COME ANYTIME, 5:30 OR AFTER FOR DINNER AND FUN!!! HOPE TO SEE YOU THERE!!!!!!
Hi everyone! I've just woken up to another weekend! Yeah!
Since I last updated, I've had an appointment with Chunyi, a couple ups and downs in how I'm feeling and much, MUCH more!
On Thursday after school my friend, Cody, had her birthday party. A limo-bus picked us and a bunch of our friends up after school. We rode down to Gameworks and played all sorts of arcade games for about an hour. Afterwards, everybody else went to a movie, but I decided to go home instead. Happy Birthday COdy!
Yesterday I walked to my friend, Mary's house, after school with friends Liz, Chandler, and Brittany. We hung out and then headed to the Washburn Homecoming game. It was a lot of fun, but I got tired and left halfway through.
Anyways that was my Thursday and Friday in a nutshell. A couple other people had great days too, including Christie and Rosie! Christie has received 100 doner cells!!!! This is great! Her counts have also began to rise!! Yeah! Rosie's counts are up even higher and she has been able to leave her room for the first time in a month! Visitors get to come too! Isn't this great news for both of them?! Finally some good coming out of all the nights they spent fighting this!
Hope to see you at the party!
Love,
Maddie
Tuesday, October 7, 2003 8:15 PM CDT PARTY*PARTY*PARTY*PARTY*PARTY*PARTY*
NEXT THURSDAY, OCT.16, MARKS 1OO DAYS USING PROTOCEL, AND WE'RE HAVING A 100 DAY PARTY TO CELEBRATE!!! COME ANYTIME, 5:30 OR AFTER FOR DINNER AND FUN!!! HOPE TO SEE YOU THERE!!!!!!
Family and friends,
Hi! So far this week, it's been so-so. Breaking into another week is always hard, cancer or no cancer, you always start out a little tired. Today I had my first clinic visit since early August. It went pretty well, however I'm kind of confused on my doctor's (actually nurse practiciner) intentions. She still isn't a believer on Protocel, which I understand, because she was taught that was. She doesn't think one thing can cure all sorts of cancers, even though it can. She gave me the "when this doesn't work" talk so that I wouldn't be too let down if it doesn't. In fact, she told me that a positive attitude combined with prayers doesn't work and not to depend on those two things too much to be cured. AHHH! Overall though, she knows how healthy I look and responded to all of her "touch my finger, touch your nose" tests. I just think doctors never want to get my hopes up too much, because they don't actually believe I'm going to beat it. To do what they are doing, treating of hundreds of people each week, I think they need to have a little more confidence in what they are doing...
Well, other than being a little frusterated with the doctors, I'm feeling great. Me, Mom, Rich, and Keegan went out to dinner with our friend Bonnie tonight. Tomorrow I meet with Chunyi.
Next Thursday, Oct.16, marks my 100th day on Protocel! This is another huge accomplishment! We're having a party to celebrate, so keep Thursday evening open! Come at 5:30 for dinner! Hope to see you all there!
Maddie
Monday, October 6, 2003 8:51 AM CDT Hi everyone. I had another jam-packed weekend!
On Friday we had school off. First we went to conferences. My teachers say I'm doing great. Phew.. Then I went with my Aunt Tricia to meet Coach Grentz, the University of Illinios Women's basketball coach. It was great to meet her. THanks Coach! Friday night I went to a little party with my friends. THat was a lot of fun too.
Saturday I woke up and my aunt had arranged for someone to come over and give me a pedicure. Thanks Aunt Alyce and Sonya! Later my friends Cody and Amanda came over to work on our Native Americans Project. Then on Saturday night we went over to the Goetz's. My mom and I also got to meet their friend, Sara. She is a very nice lady with two children and her husband. Remember to keep her in your prayers- www.caringbridge.org/mn/sarajohnson -.
TOday I ask you to visit Harris's website -www.caringbridge.org/fl/harris -. He's on Protocel but is back in the hospital. Thank you--
Maddie
Thursday, October 2, 2003 5:00 PM CDT Yeah! I have nothing but good news to update on today!!
Another school week down! We have tomorrow off due to conferences so we will be enjoying a long weekend. I've felt pretty good all week and am looking foward to a rewarding weekend!!
Also, Cheyenne just received GREATTT news after an MRI only following 12 days after radiation! Cheyenne has the same kind of tumor as me and has been taking Protocel. There is HUGE shrinkage and on some of the scans, the tumor looks completely dead!! I'm so anxious for those scans to tell me that great news too! Stop by her website - www.caringbridge.org/tx/cheyenne5 - and congratulate her!!
Yeah!! Have a great weekend!!!
LOve,
Maddie
Wednesday, October 1, 2003 9:29 AM CDT Hi everyone! Hope all you Minnesotans are enjoying this chilly autumn weather!
On Monday I took the morning off of school. I was really tired from my jam-packed weekend. Yesterday I went to all of school and then after, went out to eat with my Uncle Jef, Aunt Brynn, my cousin Kina, Dad, and my sisters. My uncle bet us $30 each that we couldn't finish our 1/2 burgers. Me and my sisters took him on and sure enough, we each had $30 by the end of the night! It was great to see them all. Thanks Uncle Jef!
Today I woke up exhausted but luckily, I had an appointment with Chunyi! When we arrived, I really woke up and had an awesome visit. Now I'm just getting ready for school.
Today I ask you to pray for my aunt's friend again, Cammie. She was diagnosed with breast cancer but it has recently metastisized to many places. She had surgery, and it revealed a lot more than they were planning on. Thanks.
Well, that's all for now!
Maddie
Sunday, September 28, 2003 2:13 PM CDT Wow! What a wonderful weekend I've had!
If you don't know, this summer I met the strength coordinator for the San Fransisco 49ers, Terrel Jones. We became friends and he even invited me to the 49ers vs Vikes game and the 49ers practice the day before. Yesterday Mom, Rich, Keegan, Aunt Tricia, Hanne and I went to the practice. We had so much fun! We toured the locker room, met a lot of the players, and of course played around! Me and Hanne stood in the center of the field and sang the national anthem, and ran the field and dove into the end zone. It was tons of fun! We also met Terrel's sister, Kim, who is beating breast cancer. Please keep her in your prayers.
Today Mom, Chachi, Aunt Sara, Liz, and I went to some of the game. Our seats were up the highest they could be and we felt pretty uncomfortable. So, we walked around the metrodome eating and poking our heads in ever so often. Knowing us, we turned it into a lot of fun. Once the Vikings were up 28-0, we decided it wasn't very fun to watch anymore and went home.
Terrel, thanks SOO much for everything you did this weekend! It was a TON of fun! I can barely wait until next year! I know the guys will kick their butts then..
In addition to praying for me and Kim and everyone else I've told you about, I ask you to pray for Caitlin. She has the same type of tumor as me, but is also on Protocel and has had GREAT results! Her website is www.caringbridge.org/ny/caitlintaylorgunn. She'd really appreciate if you could go leave her a little message!
Love,
Maddie
P.S. The pictures from the Lynx game are now up. SOrry they are so blurry.
Thursday, September 25, 2003 4:52 PM CDT Hi everyone. Another week is almost over and I have lots to update on!
School has been going well other than me feeling a little overwhelmed with all the work. I'm thinking about dropping a class to eliminate some of the work, but we'll see.
I've been feeling great too. I've had a few Protocel headaches here and there but nothing terrible! I've felt very rested this week. Yesterday I got to see Master Lin. Everything went so well! I can't wait until I see him again next week!
Today I have a few people I ask you to pray for. I learned a few days ago that little Marissa was given her angel wings and has flown up to her home. She will be deeply missed but never forgotten. Please leave her family comforting message at this time-- www.caringbridge.org/ks/marissa. Also, Sara, from previous prayer requests now has a website set up. Please visit her site -- www.caringbridge.org/mn/sarajohnson -- and leave her and her family a message also. Thanks so much. You don't know how much this means to them and their families, and to me.
Love,
Maddie
Monday, September 22, 2003 5:57 PM CDT Hi everyone! We're back from a WONDERFUL time in Pennsylvania! We had so much fun and learned so much!
While staying with Grandma and Grandpa, we visited with our relatives. First cousins of my mother, second cousins of mine, aunts and uncles of hers, and of course second aunts and uncles of mine! It was nice to see them, and so great to see my grandparents! Even though we missed everyone here, it was a very nice break for me and mom, as well as a fun change of tempo!
Yesterday, the Protocel Picnic was more than we could have asked for! Mom, Grandma Carol, Grandpa Al and I drove to Hermitage, PA. We met so many wondeful people and were able to put faces to everyone we've sent and recieved emails with. We met Celeste (www.caringbridge.org/pa/celeste), who has the same diagnosis as me, and her amazing parents and siblings. We met Sam Mills , who's been battling a brain tumor as well and has recently been diagnosed with Lyme's disease on top of it all!, and his family. We met Janice, a small cell cervical cancer survivor (and trust me, there are NO survivors of her diagnosis), and her husband, Ralph. Zach Finestone (www.caringbridge.org/fl/zacharyfinestone), who has a brain tumor, and his family. Steve Finney, a brain tumor survivor. Elonna Mckibben, a Stage IV Glioblastoma survivor, and her family. Alicia, a brain tumor patient, and her family. Dr. John, a holistic practiciner. We met, Tony Bell, a chemist who has studied protocel, Tony Preston, a pancreatic cancer survivor, and Protocel manufacturers! We met so many survivors, beginners, users, families, and friends. This only gave us more confidence, and more reassurence that we are going in the right direction and making choices!
Afterwards, we spent the night at a hotel where a few people that we had met stayed at. It was great! I had a muscle resistence test that gave us new outlooks on the medications and my dosings.
The whole trip was all around great! We found so much comfort and support at the Picnic, and so much relaxation getting away! We are happy to be back home and happy to see the family!
All I can ask today is to pray for all our new Protocel friends and everybody else we have come across! Thank you so much for all of your support! Make sure to sign the guestbook, I love reading them!
Maddie
Thursday, September 18, 2003 8:28 PM CDT Hi everyone! We made it to Pittsburgh safely. The flight went well and the drive also. I'm feeling a TON better than yesterday. I was getting headaches, nausea, and pretty much feeling all around BLAH! Luckily, I had both a Chunyi visit AND a massage, and by this morning was back to my good ol' self! I decided to take a break this morning from school since I was still kind of tired.
Today I ask you to keep little (brother-bear) Keegan in your thoughts. The poor thing was up all night with a terrible cold. He was very congested and had trouble breathing, especially when he drank his bottle. We called Rich tonight, and Rich says the night has already started out rough.
Anyways, more to update tomorrow! Love,
Maddie
Tuesday, September 16, 2003 8:49 AM CDT Hello everyone. I woke up bright and early this morning ready to start another day of school!
I've started to loose some hair again. It's been quite awhile since chemo, so it probably won't all go, but since radiation continues to work for months, it may be from that. It's been kinda scary seeing clumps of hair on my shirts and pillows, but hey, hair doesn't matter, as long as I'm being healed!
Only two more days until me and Mom are off to Pittsburgh!
Today I ask you to pray for Rosie. She is preparing to have a bone marrow transplant, just like Christie has had. Please keep her in your prayers and visit her site-- www.caringbridge.org/mn/rosie -- if possible!
Thanks!!
Maddie
Saturday, September 13, 2003 8:09 PM CDT Hi guys and gals! I finsihed off this week strong, other than a tiny problem with a teacher. To make the story short, I turned in a field trip slip signed in pencil, and she wouldn't accept it. After my mom spoke with the teacher (and if you know my mom, you know she TOLD her! hehe) and the principal, the principal agrees that that is a ridiculous rule that she must have kinda made up. Anyway, the field trip only allowed for 67 people to go, I was number 61 when I turned mine in, and now, I don't get to go! Teachers, teachers! Lol..
Last night I went to "Dickie ROberts" with my friends Cody, Liz, and Caroline. It was really funny! Today I took one my messy room and helped my sister with her disasterous room too. Tonight my friends Mayumi and Hanne may come over, otherwise I'll catch up on some rest.
Whoever doesn't know, on Thursday, Mom and I are flying out to Pittsburgh for a Protocel Picnic. We are so excited to meet all the cancer survivors that have used Protocel (the alternitive treatment we are on)!! We get back on Monday. We will also have a chance to stay with Grandma Carol and Grandpa Al, they live about 45 minutes from Pittsburgh.
Today I ask you to pray for my friend Kody. He is quite the boy with quite the site. He is what you call a real fighter. Please visit his site --www.caringbridge.org/fl/kodysstory/ -- if you have a second.
Thanks!
Maddie
Wednesday, September 10, 2003 6:52 PM CDT Dear friends and family,
I just discovered that Julia earned her angel wings and is up in Heaven cancer-free. She faught so hard and now finally is getting some rest. Please visit her site -caringbridge.org/pa/julialevy- and leave her family some support. They have also faught so hard for their baby Julia. Remember them in your prayers.
This morning I woke up feeling very, very tired. I decided to stay home the first few hours and catch up on my rest. Once I got to school I felt pretty good, but still kinda tired. Now, I'm feeling great, probably because I only got half the homework I had last night!
While praying for Julia tonight, please also pray for my friend, Christie. If you have been following her story, you have probably discovered that tomorrow is her transplant day. This is a HUGE day and a HUGE step towards recovery! Best of luck, Christie!
Thank you for all your continued prayers for all of my friends, all the Caringbridge families, everyone on Protocel, and all around everyone that is struggling with cancer, or a similar situation.
Love,
Maddie
Tuesday, September 9, 2003 9:23 PM CDT Dear family and friends,
Hi! A fun Sunday on the boat with Mom, Rich, and Keegan, led into a good start at school. We had our school pictures taken on Monday and our entire nights taken tonight. What I mean is a few of my teachers don't understand that when I come home, I like to check up on all my Caringbridge friends, not do 5 hours of homework. Even if they don't understand, I stick to my routine. I come home, check up on all of my friends and then do homework. My healing and the healing of my friends comes before schoolwork. Me and Mom have decided I shouldn't get stressed out about work, there's plenty of other things in life to be stressed out about.
Anyway, when I came home today and read a few of my friend's journal entries, I was left in tears. A few of them are not doing to well and are in need of prayers now more than anytime before. Poor Julia is still holding on. That sweet little girl is so strong and has faught so hard. Please, remember her -www.caringbridge.org/pa/julialevy- in your prayers, as well as Katia. Katia is fighting to get back into remission for a BMT but is oh so uncomfortable. Please remember her -www.caringbridge.org/fl/katia_leukemiapage/- in your prayers as well as all of my friends. Thank you so much. You can't imagine how much of a difference your prayers and support make.
Also, I have recieved something that can really not go without a thank you. As most of you know, many basketball, a few soccer, some baseball and football teams from all around the county have been sending me stuff; t-shirts, signed balls, jerseys, and more. A few days ago I recieved a envelope full of others. The whole University of Illinios Women's basketball team and staff (my friend coaches there) each sent me a letter. This really made my day. Thanks guys.
Love,
Maddie
Saturday, September 6, 2003 7:10 PM CDT Hi everyone! Today I had another great day! Heres the update:
First of all, yesterday's riddle was as follows- I have experience climbing hills and plants taller than trees. I don't eat fat to stay nimble. What's my name?-- the answer is Jack. Think about it, Jack and Jill, Jack and the Beanstock, and Jack Be Nimble.
Moving on.. Today me, Mom, Ashley and Aunt Sara took a Level I Qi Gong class from Chunyi at St. Thomas. It was very interesting and all in all, a lot of fun. Early on in the day, I was very nausous and had to leave the class for a few minutes, but it quickly passed and I was able to get back to learning. There were a few loose screws in our class (you had to be there to really understand) but I had a good time anyway. It was from 8:30am this morning to 5:30pm this evening. Even though it was long, it's much better than school! I think since I completed this, I should be called Master Paguyo. What do you think? Hehe. Again, if anyone is interested in taking classes as well, tell us and we can get you the possible dates. I've said it once and I'll say it again, it's an amazing form of healing that more people should know about.
Tonight will be a low key night for sure. I am zonked. I feel like the Energizer Bunny who keeps going and going and going and going.... Tomorrow sounds like it's to be a scorcher so we'll either hit the pool or go out on the boat.
Today I ask for prayers for my friend Mckenzie. She has a pontine glioma as well and has recently began Protocel. Her website is http://www.caringbridge.org/wv/mckenzie/. If you have time, please pass by it and leave a message. Fighting cancer sucks, but through your entries we all are reminded we're not alone and that we have your support.
Thanks so much! Last, September is Childhood Cancer Awareness month. Please be aware of all the children battling cancer and keep every one of their souls in your daily prayers. Visit www.childhoodcancerawareness.org/ for more information.
Love,
Maddie
Friday, September 5, 2003 6:28 PM CDT Hi everyone! One week of school down! Only 9 more months to go...
How about a riddle to start it off today? Charlotte brought this home for homework last night and we finally found out the answer!
I have experience climbing hills and plants taller than trees. I don't eat fat to stay nimble. What is my name?
(answers will come tomorrow)
This last week has went pretty well. I've woken up a few days this week barely able to get out of bed, but once I get going, my energy level is pretty good. The good news today is...NO HOMEWORK!
Tomorrow me, Mom, Ashley, and Aunt Sara are taking a Qi Gong class from Chunyi. He gives classes through the end of June, so if you're interested, tell us and we can get you the forms.
Today I have more friends to ask you to pray for. My Aunt Paula's friend, Kammie Preston was just diagnosed with metastic breast cancer and has gone through it once before. Please remember her and her three young children in your prayers. Also, Julia Levy is still holding on, but it's been very hard on her and her family. Please visit her site, www.caringbridge.org/pa/julialevy, and leave her words of support. Two new friends signed on today and yesterday that I ask you to pray for as well. Jessie, a 7th grade girl who has been fighting liver cancer, www.caringbridge.com/pa/jessiespage, and Connor, a brave boy who relapsed with rhabdomyosarcoma but is still fighting hard! www.caringbridge.org/tn/connorhunley/. Also, another friends' friend's water broke almost 5 months early! Please pray hard she can hold on a while longer until the baby is strong and big enough to be born. Last, I ask you to pray for Litte Katia. She is having a hard time right now and could use some extra prayers. www.caringbridge.org/fl/katia_leukemiapage--Thanks. If you or someone you know, cancer or noncancer related, ever needs prayers, please tell me so I can inform all of you. With all of our prayers, they shall be answered.
May today there be peace within.
May you trust your highest power that you are exactly where you are
meant to be....
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love
that has been given to you....
May you be content knowing you are a child of God....
Love,
Maddie
Thursday, September 4, 2003 9:14 PM CDT Hello everyone! These last two days of school have been overwhelming, yet great at the same time.
Okay, first the "overwhelming" stuff. This year the teachers are doing a whole different grading system than in the past. You either get an A, a B, or an I, which is basically an F. I've always been an A student, but this year to get an A you need to complete extra credit work, and an extra project, for every class! Ahh! How much time do these teachers think we have? I mean, on the second day of school, I was up until almost 11 finishing homework! I wonder what January will look like!!
Then the "great" part. It's felt good to get back in the swing of things. I've been reunited with a lot of friends and teachers that I missed over the summer.
Today I ask you to pray for my friend, Ronnie, or the Gooch. He's been fighting ALL, is in remission, and just finished his last round of chemo. He has quite the website and I advise you to go check it out. Check the Gooch out at www.caringbridge.org/page/gooch/. He even has a link to a "cancer-smash game"!
Thank you for your continued prayers for my healing along with all my friends healings.
Love,
Maddie
Tuesday, September 2, 2003 8:04 PM CDT Hi everyone! Here we go again, ANOTHER SCHOOL YEAR!
Charlotte started her first year at Anthony as a 6th grader, Ashley is at Southwest I.B. as a junior, and I am still at Anthony as a big 8th grader! Today, school went pretty well. We didn't do anything of great excitment, but it was okay. I look foward to actually beginning the year, but not the "reviewing the rules" and stuff! Anyway, all in all school was great! Charlotte and Ashley also had good days. Keegan and Mom on the other hand had nothing to do with themselves all day! When I returned home, I was happy to see Keegan's smiling face up on his chubby legs standing all by himself! Even though it's only for 10-15 seconds, he has another trick!
Today I ask you to pray for two of my friends that you probably already know. Brittany became one of God's angels yesterday night. She faught a long and hard journey and she has finally got some rest. Her family needs your prayers at this time especially as her mother battles her own fight with cancer --www.caringbridge.org/fl/brittanyzipter--. Also, Christie went into "lock down" tonight. To prepare for her transplant, she has to be 110% healthy, so to prevent germs and infection, she cannot leave the room or have any visitors until her counts come back up, which will be after the transplant. Please say a prayer for her and her family. www.caringbridge.org/mn/christie.
Thanks! Love,
Maddie
Monday, September 1, 2003 2:09 PM CDT Hi everyone! Happy Labor Day!
I've done a lot in the last two days. Two nights ago, I went to "My Bosses Daughter" with my friends Cody, Chandler, and Nikki. It wasn't the best movie, but it was a lot of fun. Yesterday we spent most of the day over at a friend's house swimming. Later on in the night, my friends Austin and Mayumi joined us. Charlotte, Austin, Mayumi and I went for a late night swim in the pool as warm as a bath! Afterwards, we headed over to Rich's house for a sleepover! We rented Chicago. It was pretty good. Mayumi, Austin, and Charlotte were up for watching the Lizzie Maguire Movie afterwards, but BOY was I tired! Anyways, I don't think I would have enjoyed that one. Hehe.
After a fun-fullied night I was happy to wake up and get to go and see Chunyi. Charlotte, Austin, and Mayumi accompinied me and my mom. They were amazed with the session as was Chunyi. Master Lin says my blockages are almost completely clear! So far today my family's been running around getting our last minute things for school! Ahh! School! I'm excited and not excited at the same time. It seems like this summer has gone by so fast in some ways, but in other ways it seemed to last forever!
Today I ask you to pray for my friend, Zach. He is also using Protocel and is doing very well! His website is www.caringbridge.org/fl/zacharyfinestone.
Thanks!
Maddie
Saturday, August 30, 2003 2:47 PM CDT Hi everyone!
Yesterday me and Aunt Tricia went on a little road trip. She had some recruits to talk to in Ohamaha and along the way. Best of all, we got to see my Aunt Paula and cousins Brennan and Kyrie. I also got to see my Grandma Carol and Grandpa Al who were visiting Paula! We had a lot of fun!
Also, thank you for all your prayers for me and my friends. A couple days ago, I told you about Sarah. Unfortunatley, the glitch on her lung is not mucous, but cancer. It has spread to her brain, leaving her with almost 20 tumors. It is such hard work with one tumor, I can't imagine how she must be feeling. Please continue to pray for her and her family at this hard time. Also, my friend Katia relapsed with leukemia this week. As she undergoes another fight, please keep her and her family in you prayers also.
http://caringbridge.org/fl/katia_leukemiapage/
On a lighter note, Marissa is doing a little better. She is home. She is still in critical condition but is feeling much better than before. Also, Julia is feeling more like herself more and more each day. Luke enjoyed his Hulk birthday and Cheyenne is doing great with radiation. Christie has a few days off and will be admitted Tuesday night. Her transplant is schdeuled for the 11th!
Thank you again,
Much love,
Maddie
Thursday, August 28, 2003 9:52 PM CDT Hello all. Today was another low key day. I felt really good though, and had a lot more energy!
This morning I had clinic. The doctor was impressed with me and very happy about how I was doing. Everything looked great and our worries about the bump above my port were confirmed. It's only the cord, and since I've lost a little weight it sticks out a tiny bit farther. We also decided to keep my port in in case we ever go back to treatment so we wouldn't have to put it again and weaken another blood vessel. Blah, blah, blah!
Today I ask you to pray for one of my friend's friends, Sarah. The doctors found a problem on her lungs and it looks to either be lung cancer or fungus build-up. Please pray that it is only a minor something and that everything can be resolved quickly and safely. Also, PLEASE keep thinking and praying of little Marissa who has the same type of tumor as me. She was rushed to the hospital a few nights ago after spiking a fever of 107.8 and having a seizure. From another site, I read: Doctors say that she has pneumonia. Unfortunately the newest update we've gotten says that yesterday she had several seizures and is unresponsive. Please keep praying for her and her family as they recover from this difficult time. www.caringbridge.org/ks/marissa
Thank you,
Maddie
Wednesday, August 27, 2003 1:10 PM CDT Happy birthday to you,
Happy birthday to you,
Happy birthday dear Charlotte,
Happy birthday to you!!
Hope this year brings all your birthday wishes little sis!
Family and friends,
Today I'm feeling good. I didn't have a great night. I have a cold, my neck bothers me on and off, and we just bumped my dose of Protocel up, leaving me with some headaches and BLAH feeling. This morning I met with Chunyi. I left his house feeling 50% better than when I entered it. Then, me, mom, and Keegan met Chachi and some of her friends, and Aunt Tricia at the Mall of America hotel where they stayed last night. We swam for awhile before we came home. Today may just be a low key day.
Thank you for your continued prayers for me and my new friends!
Maddie
Tuesday, August 26, 2003 10:49 AM CDT Hi guys! What a day I had yesterday!
This summer I was sent free passes to Camp Snoopy, Underwater World, The Grand MOA Hotel, and given discounts to certain stores. Yesterday me, seven or eight of my friends, my mom, and my brother and sisters all went to the Mall of America. We rode on some rides, did some back to school shopping, and trekked through underwater world! We even got to pet sharks! Later on Rich, Tricia and her friend Julie, joined us. Rich took Charlotte, Keegan, and Ashley home and all f us and Aunt Tricia went to dinner. After Tricia and Julie left, me, Mom, and my friends headed over to the Grand Hotel. We slept on the Concierge level. It was lots of fun!
This morning I woke up energetic and feeling good! My friends all decided to stay at the Mall of the Universe instead of coming swimming with me. This morning, Mom, my sisters, our friends, Susan, Mary, and Greta and I are going to be at the pool!
Also, thank you for all your prayers for me and my friends. Please continue to pray extra hard for these people:
Christie just started on Monday at the U. After she undergoes a week of radiation and chemo, she will have her BMT. --www.caringbridge.org/mn/christie--
Nolan flew out of this world on Sunday unto a better place where he is finally cancer free. Please pray for his family at this time. --http://nolans_hope.tripod.com/--
Priyanka also earned her angel wings and went to be with God. Please pray for her family as well. -caringbridge.org/mn/priyanka-
Brittany continues to make improvments!
-www.caringbridge.org/fl/brittanyzipter/-
Marissa spiked a fever of 107.8 two nights ago and was taken to ER via ambulance. She is stable but needs your prayers. --www.caringbridge.org/ks/marissa--
Julia is doing alright also but still needs your prayers, as does her family. -http://www.caringbridge.org/pa/julialevy/-
Cheyenne continues to do well with radiation. Luke is celebrating his fourth birthday today!! Jake, Kaelei and Stephanie are doing great!
Again, thank you soo much for all your prayers! Love,
Maddie
Saturday, August 23, 2003 3:47 PM CDT Hi everyone!
Yesterday I had another massage. The masuosse said she massaged "twice as deep as last time" so it left me pretty sore, making last night, not a sleep-filled night. Anyways, before my restless night, my friends Austin, Liz, Cree and her mom, Julie, came over for game night! Me, my mom, Aunt Tricia, and all of our friends played Apples to Apples, Scatagories, and my mother's favorite, Blurt! It was a lot of fun!
Today I woke up feeling good other than a sore neck. Soon enough I was back to my old self and swimming with Mom, Rich, Ashley, Keegan, Charlotte, and Aunt Sara. Again, we had lots of fun. I was surprised to see my friends Dannie, Liz, and Austin in the bathroom when I opened the door to enter. SURPRISE!
Also, today is another special day! It is my cousin's birthday. Brennan is 13!
Happy birthday to you,
Happy birthday to you,
Happy birthday dear Naughty Brennan,
Happy birthday to you!
Today I ask you to pray for my new friends, Kaylyn--http://www.caringbridge.org/sc/kaylynmei --and Lindsi--www.caringbridge.org/mn/lindsileanna. Kaylyn is Marissa's(introduced earlier) Dianbai China Sister. Lindsi happened to be a nurse on the 8th floor at Children's, which is the Hematology/Oncology floor. If you could visit their sites and leave them your prayers, that would be great. Thanks!
Love,
Maddie
Friday, August 22, 2003 8:48 AM CDT Friends and family,
Yesterday I had an Ion Cleansing. My mom, Liz, and Hanne came with. Hanne, did it with me so we could compare what our products looked like. You sit with your feet in a bowl of water and salt. They turn a machine on that does the pulling. An Ion Cleansing pulls toxins out of your whole body, and they come out of the pores in your feet. By the end of the session (which lasts about 30 minutes), my water was a brownish, orangish, greenish with chunks of toxins floating on the top. Yuck! Hanne's was completely different. Hers was a yellow with black and blue specks floating on the surface. Icky! A thanks to Janice who directed us to this! (oh yeah, pictures are on the way!!)
Afterwards, I was pretty zapped. They said it would take a lot out of us and it sure did! The rest of the night was a low key night!
Also, I forgot to tell everyone about my new cousin, Baby Deanna Rose. Congrats Uncle Peter and Aunt Joanie! Please say a special prayer for the new bundle of joy and their family tonight. Thank you!
Well, that's all for now!
Love,
Maddie
Wednesday, August 20, 2003 9:44 PM CDT Hi everyone!
Last night the Hanne nd her mom, Susan, came over along with Liz. We played games and had fun! And yes Susan, I like Menonite Scrabble, especially since I beat you and Chach! Hehe. It was a lot of fun.
This morning I woke again feeling great! Liz came over and we worked on my project, the family room! My mom helped us get a path through all of the junk and eventually we got it pretty cleaned up. Then I had a massage. Relaxed and feeling good Austin joined me and Liz for a sleep over. So far, we've done some crafts. Well, I better get back to those girls!
Today I ask you to pray for my friend, Brittany. She is in need of our prayers. Please visit her website -- caringbridge.org/fl/brittanyzipter -- and leave her your prayers and thoughts. Thank you for the continued prayers for me and all of my friends.
Love,
Maddie
Tuesday, August 19, 2003 6:38 PM CDT Hi guys!
Yesterday I wasn't feeling any better then the day before. My mom called Chunyi for an "emergency" session and after a massage and a Chunyi visit I felt much better.
This morning I woke up without the blah-yuck-ick-ish-argh-kinda feeling. My neck felt better, I had no nausea, no temp, and no discomfort at all! In addition to feeling great, I got to go see Chunyi again! Afterwards, I even couragously took on cleaning the messy family room. After a few hours of cleaning I took a break and went shopping, and returned home to finish my mission. Tonight, Liz is over and our friends, the Goetz's are coming over for a very relaxing, no-sicknesss, and fun night.
Today I ask you to pray for my friend, Stephanie, who is in remission after being treated for leukemia. Her website is caringbridge.org/mn/brown_eyed_shorty. Please stop by and offer your thoughts and prayers. Also, I have a friend named Sam who really needs your prayers right now as well. We don't remember his site, but it will come soon. Thank you.
Love,
Maddie
Sunday, August 17, 2003 0:16 AM CDT Hi everyone. Today was not a great day for me.
I woke up with lots of pain in my neck. For those of you that don't know, I was in a car accident a couple weeks ago. Ever since, my neck has hurt on and off. Anyways, the pain could be from that, it could be from toxin build up, and it could just be sore muscles! The pain got so unbearable it got hard to do much of anything. My mom took my to the spa for a massage and afterwards I felt a lot better. The masuosse said my muscles were really locked up and she knew she hadn't gotten it all. Sure enough, a few hours later the stiff neck had returned, but not nearly as bad. Anyway, after about 999 different muscle "relievers" and plenty of rest, I feel a a lot better and my neck hardly hurts. Me and my mom decided I need a massage everyday until the pain goes away!
Well, now I've been sleeping a lot of the day and am thinking it may be a little bit hard to get back to sleep at this hour!
Today I ask you to pray for Christie and my other friend, Julia. Christie just got GREAT news, she is in remission, at home, and preparing for the U. Please stop by her site--www.caringbridge.org/mn/christie--and wish her well with the BMT. I'd like everyone to pray extra hard that they find a cord blood match very soon and that she can continue on her road to recovery. Thank you. Julia has a DPG as well, and has recently began protocel. At this time, she is having a hard time and needs your prayers. Please stop by her site as well --www.caringbridge.org/pa/julialevy-- and let her know she is in your thoughts and prayers. Please find time in your busy days to stop by and leave a message in each of their guestbooks. Thank you,
Maddie
Friday, August 15, 2003 3:06 PM CDT Hi everyone! I have so much to tell you about!
Yesterday evening, as I mentioned before, Jackie, Aunt Tricia, Liz, Hanne, Charlotte, and I, all went to the Lynx game against the Sparks. It was reallllly fun! We shared lots of laughs and got to know Jackie. We also saw our friend, Steph with her mom and sister. We had a blast. This morning Jackie had to get back to work in Miami. Though she only stayed for a day, we look foward to visiting her in Miami!! Anyway, thanks A LOT Jackie. Oh yeah, Go Miami!
Today, me, Mom, and Charlotte went and ate lunch with my choir teacher, Ms. Quehl. She's very nice and I really enjoyed seeing her, after all, I did miss her. We also met her cute puppy, Lizzy! I look foward to returning to her class in the fall! Thanks so much Ms. Quehl! You rock!
Today I ask you to pray for my sister Charlotte. After we visited Ms. Quehl, she started feeling kind of sick and she got an earache. Please pray she feels better soon! Thanks!
Love,
Maddie
Thursday, August 14, 2003 2:55 PM CDT Hi everyone. Today is the first day I've felt better! The last time I posted, I must have jynxed it again. Anyway, when I was feeling sick, my friends Liz and Hanne were there to keep me comforted. Thanks guys!
Last night, Jackie came in town. Jackie is a friend of Tricia's, but also of Terrell's (oh yeah, Terrell, Thanks for the box full of goodies!), and another friend of ours, Marsha. For any of you that don't know, basketball teams from around the country have been sending me things since my diagnosis. Jackie coach's Miami women's basketball, and was one of the coaches that sent me treats. Anyway, since she had so many different connections to me, she and I wanted to meet. This morning, she took me, Chach, and my AUnt Tricia to the Lynx shoot around. I got to meet all the players and have my picture taken with them. It was lots and fun. And there's more to come! Tonight, Jackie is taking, me, Chach, my Aunt Tricia, and friend's Liz and Hanne to the game! I'm so excited. Thanks for everything Jackie!! Go Miami!
Well, I think that's all the news for now!
Today I ask you to pray for all my friends I've talked about so far. You really don't know how much one guestbook entry means to all these children. I check all my friends guestbooks and look for all of your entries. If you have time and you haven't signed their guestbooks and left a note of support or encouragment, please do. Thanks so much!
Love,
Maddie
Tuesday, August 12, 2003 12:40 AM CDT Hi everyone. Unfortuantly, right after I signed off yesterday, I started getting that BLAH!!-like feeling back. To describe yesterday -headaches, nausea, temperatures, tiredness ahH!- the whole nine yards. Anyway, today I'm feeling much better, but, I don't want to say too much and then jynx it, now do I?
This morning I saw Chunyi! It felt really good and he still sees almost no blockage. Since he thinks I'm doing so well, he said I didn't need to be seen twice this week. While those words are always good to hear, I'd love to see him again. After CHunyi, we went over to Abbott for our 6 week post radiation Follow-Up. Dr. Kim thinks I'm doing great. I also got to see my old radiation techs and some more of my friends down there! It went great!
Today, I'm not sure what I am going to do yet, but trust me, I will do something with my day since I'm feeling so much better!
Also, today I ask you to pray for a little boy named Luke. He just finished radiation treatment. Please stop by his site and congradulate him. www.caringbridge.org/fl/luke.d
Monday, August 11, 2003 10:57 AM CDT Hi all. I just got back from the U of M Fairview hospital. We had a consult with Dr. Hall, a neurosurgen that performs a special chemo treatment at the University called the Blood Brain Barrier Disruption, or the BBBD. This is what it looks like:
Every month for a full year, I go to the University for this process. I go in the night before I'd have this done to be hydrated. The next morning I am put to sleep and the doctors thread a catheter through my femoral artery all the way up past my blood brain barrier (which is what surrounds your brain so drugs like chemo can't get in). They open my blood brain barrier with a sugar concetrated substance, called mannitol. They then administer three types of chemo through directly into my tumor. I stay in the hospital for another day for follow up, and then I'm out.
So, there is that treatment plan in a nutshell. Dr. Hall said he has enjoyed some success with treating pontine gliomas, but as he told us his stories, most of them ended in "and then recurred 2 years later" or whatever. Though this treatment is impressing and me and my mom know someone who is doing very well undergoing this treatment, I truly believe Protocel, Chunyi, all of everyone's thoughts and prayers, God, and drinking water (hehe) have already beat this thing. This isn't to say we won't consider it and possibly do it, but who knows? Maybe this thing is already dead!! Maybe? Of course it is!
Today I'm feeling much better than the past couple days. I'll still have some not-so-good moments but most of my moments are good ones. I'm already through one bottle of water and only have about...hmm...a million more sips to go! Tomorrow, we meet with both Chunyi and our radiologist. I'm excited for both! Dr. Kim and the raidiolgy doctors were probably my favorite so far!
Today I ask you to pray for two people. Earlier this week, I forgot to inform you that my Aunt Sara had a seizure. She's felt fine ever since. She is hopefully going in tomorrow to get everything checked out. Please pray that everything is normal and that sshe doesn't have any more seizures! Also, please pray for my friend's, the Kaput's, friend named Mary. She was recently diagnosed with cancer, but because it's in so many places, they haven't diagnosed anything specific. Please pray for her and her family.
Also, be sure to check out my cool online quilt of love made by Angel Becky! Thanks Becky! Also, if you haven't seen my other one its down there too. Thanks Angel Chris for that one!
Thanks so much for all your prayers! They're working!
Love,
Maddie
Sunday, August 10, 2003 10:42 AM CDT Check out the new pictures! They're a little big but it was the best Rich could do - Thanks Rich!
Hi everyone! A few days ago I started feeling a lot better, sooo...this is what I did:
Game day didn't really fall through, only three of my friends, Liz, Austin, and Krista came. So instead, we went out and did a little back-to-school-shopping. What says friendship better than that? Afterwards, I went to my friend, Jenny's party. It was fun, but the strobe lights and blairing music were a little too much for me and I ended up with a little headache because of it.
The next day me and Mom picked up my MRI films from Children's. Since we were so close, we visited Karla, Christie's mom, and my old radiation tech. It was good to see both of them. They are both such nice ladies. Well, I was feeling good early on in the day but I started to feel not-so-good as the day went on.
Finally yesterday, I woke up feeling okay. Not real good but not terrible. I was running a low grade temperature, a lysing sign of Protocel, but Keegan was too and he's not taking Protocel. So it was either because of pcell or me and Keegan caught a little bug! The morning was a little hard for me. My mom and aunt are kind of concerned about my water intake. I should be drinking alot of water with Protocel, and I've only gotten close to my recommended intake. It's been hard, especially not feeling so good. I just got a little frusterated with all the "Drink your water"'s and "Three more bottles". But it quickly passed and I was able to get out again for a little more shopping with my mom, and aunt's Tricia and Susie. WHen we were shopping, my mom didn't think I looked so good so we decided to come back and rest.
This morning I woke up feeling tons better than before. Yesterday my mom lowered the frequence I take pcell. I now take it every 6 hours and wake up in the middle of the night at 2 to take it too. I'll still get a headache here or there but not nearly as bad as with every 4 hours.
Today I ask you to please pray for my friend Kaelei. She is anxiously awaiting the new school year and doing well. Please leave her a note in her guestbook letting her know she is in your prayers. Her website is www.caringbridge.org/ar/kaelei. Thank you for you continued prayers for all my friends and I. They are greatly appreciated!
Love,
Maddie
Thursday, August 7, 2003 9:43 PM CDT Hello everyone,
Great news!! I finally threw up today!!!
I'm sorry I haven't updated for a couple of days, but I have been feeling nauseous and have been taking it easy. Today was day #5 since we added my extra dose of Protocel and I threw up twice. Under normal circumstances this would be a bummer, but it really felt good to get it out, and it only confirms what we already know- Protocel IS doing it's job! I'm still not feeling 100%, but am improving. I've also had a couple of headaches these last two days- nothing horrible, just bothersome enough- so my mom is keeping a careful watch to make sure they don't get too bad.
OK- some more great news- I had a session with Chunyi today, and it was terrific! He and his family were in New York on vacation, so it had been a little more than a week since I last saw him and boy did it feel good! He is so encouraged by my progress. He told me today that he sees very little blockage remaining!
Tomorrow, a few of my friends are coming over for "game day". I'm looking forward to hanging out with them and if you're reading this and are bored, come join us. (early afternoon)
That's it for now. I'd like to ask you to pray for my friend, Jake, and his family. We found out about Protocel through his website and his mother, Susan, has provided us with so much information and support. Please sign his guestbook- www.caringbridge.org/page/jakegriffin- and let him know you're a friend of mine. Please continue to pray for me and Christie, too. Your prayers and messages mean so much.
Love,
Maddie
Tuesday, August 5, 2003 2:28 PM CDT Hello everyone! Yesterday wasn't the best day of my life, but it just brings good news, Protocel is working! Most of the day yesterday, I spent sleeping. I had a lowgrade fever and a pretty bad tummy ache but no matter how hard I tried, I couldn't throw up! Me and my mom think all this nausea is from bumping my dose of Protocel up.
This morning I woke up, not feeling a whole lot better, but excited to see Chunyi! Chunyi has been in New York for a week and is coming back today. Anyways, we got out to Chanhassen and there was a note on his door apoligizing, for his flight had been being cancelled. Though we were disapointed, I sat on his steps for awhile. Hopefully some of Chunyi's healing energy passed through my body! Returning home, I started to feel a little better. When we finally got home, I didn't feel as good. I decided it may feel good to get out, so I'd stop thinking about it. So, we went to Target, my best friend! I got some supplies for school, and Keegan got a brand new Baby Einstien video! Then we went out for lunch at Panera. Since I didn't eat anything yesterday, it felt good, and my soup calmed my stomach. Right now I'm feeling good but think I'll just take it easy and get a little rest!
In addition to praying for me, Christie, Cheyenne, and Marissa, I ask you to pray for a little girl named Priyanka, who is not doing very well at this time. Please stop by her site- www.caringbridge.org/mn/priyanka- and offer her family words of support.
P.S. For all of you that are interested in some new pictures, I'm working on it! My scanner has been down for a few weeks but trust me, they'll be here in no time!
Thanks for checking up on me!
Maddie
Sunday, August 3, 2003 8:11 PM CDT Hi everyone. I hope everyone is enjoying their summers as much as they can before fall comes along, bringing...ahh...school! Though I am excited to return to school, I wish we just had a LiTTLE more itme before we have to go back.
On Friday, we had a small little get together with a few friends and family. It went pretty well, and Brennan and Kyrie enjoyed it. This morning, they left for Ohmaha. I hope they had lots of fun, I know I did! Though we'll miss them, my Aunt Paula and cousin Cameron missed them too and were ready to see them again!
Today I tried to go to Mall of America with some friends, but had to come home shortly after we arrived because I started to feel pretty sick. I would have liked to stay longer, but I felt better after coming home and taking a nap. I'm feeling a little better but plan to just take it easy for awhile.
Today, I ask you to pray for two of my friends. Christie, who is getting herself ready for a bone marrow transplant still needs your prayers. Her website is www.caringbridge.org/mn/christie. Also, please pray for www.caringbridge.org/ks/marissa/. She has a pontine glioma also, just began protocel, and is not doing very well after her treatment at St. Judes. Please visit both their sites and leave a message of support.
P.S. View my SmileQuilt by clicking on the link at the bottom of the page! You'll love it! Thanks Angel Chris and everyone else at SmileQuilts!
Thank you,
Maddie
Friday, August 1, 2003 6:24 PM CDT Hey everyone! What an day I had! A bunch of fun stuff today ended leaving me kinda shoke up!
Today, my Aunt Alyce took my sisters and I, and our cousin Kyrie, to work with her. She works downtown with Target. First, we headed to the Wyman building and got a tour of Target's photo studio. We even got to dress up in bullseye wear and strut our stuff in front of the camera. It was lots of fun. Then we rushed over to Target Plaza South, where my aunt works, and met with a fashion designer, Mariette. She is a senior designer of Xhiliration. Boy, does she have a fun job! First she goes out and purchases things she likes, things that could inspire her own work, pretty much anything she darn-well pleases! She travels all over the world to do so. Wow! How about that for a job? After that we ate lunch and then headed over to attend the rehersal of Glamorama!! For any of you that don't know what this is, it is a huge fashion show ("The" Fashion show of the year highlighting fall trends) downtown that a lot of people attend. It's said to be the biggest horray-horrah the whole year in fashion! Tracey Uulman was the host, Uncle Kracker sang, and a whole bunch of 6 feet tall, 9 inches across models modeled! We were going to backstage and even get our own makeup done, but time didn't allow and it was time to take my protocel. Even without it, We had sooo much fun!
On the way home, we were in stop and go traffic, but I guess not everyone on the freeway realized it. From behind, someone hit us and caused us to hit the next car ahead of us. Turns out the person that hit us was an illegal alein and had no license and a fake insurance card...We all luckily had our seatbelts on and it was just a minor fender-bender, and no one got hurt. Thank God!
I'm feeling great and enjoying these last couple days with my cousins. Just to celebrate them coming up, we're have a little get together. Though it's short notice, we invite anyone who'd like to come to stop over for dinner. Come around 5! Thanks!
Since I can't put all the caringbridge families on my website that I pray for, I will highlight someone new I'd like you to add to your prayers and visit their website to leave a message of support. Today I ask you to pray for Cheyenne. She was diagnosed with a pontine glioma on July 9th and has started her radiation and chemotherapy, and also Protocel. She is one brave girl! Please stop by her site, www.caringbridge.org/tx/cheyenne5 and offer her some words of courage. Thank you!
Love,
Maddie
Thursday, July 31, 2003 7:39 PM CDT I'm feeling a lot better today, other than a tad bit tired. But anyone would be in they went to sleep at 2am and woke up at 8am, right? Hehe.
Last night, after Jillian's, me and my cousins stayed up awhile before calling it a night. Today was kind of a relaxing day to get caught up on our rest, even though I never ended up falling back asleep!
This morning I woke with energy and excitement to begin another day. Tonight, Brennan, Aunt Tricia, and I started to go on a bike ride before the rain started pouring on us!
Thank you for all your continued love and support. Please continue praying for me, Christie, all the children using protocel, the Caringbridge families, and anyone else going through a similar time in their lives. Thank you!
Love,
Maddie
Thursday, July 31, 2003 0:07 AM CDT Hi everyone. Last night I had a fun time on the boat. But a fun time turned into a nauseating night and a throwing-up night turned into a sit-in-front-of-the-toilet kinda day. After I took a little nap this afternoon, I felt better just in time to join Charlotte, my cousins, and my Aunt Tricia at Jillian's at the Mall of America. Jillian's is an arcade/bowling alley/retaurant. It's pretty fun! Well, that's all for now! Talk to you later!
Love,
Maddie
Tuesday, July 29, 2003 2:42 PM CDT Hey! Hope you are all enjoying your summers as much as I am!
Yesterday, my sister, Charlotte, and cousins went swimming with Sara at a friends house. After a wave of nausea, I felt better and was able to enjoy the rest of the day. Last night me, Charlotte, Brennan, Kyrie, Mom, Rich, Keegan and Hanne all checked into a nice hotel just for some out-of-the-house fun. We went swimming, watched movies, hung out and more!
This morning after checking out we retuned home to catch some rest for our big afternoon. Later today we will be taking the boat out on Lake Minnetonka for a an evening cruise. Sounds like fun, ey?
Other than a little stomach ache here and there, I am feeling good and getting my strength back more and more each day!
I am about to fill out my first Make a Wish forms. I am thinking either a family vacation to Hawaii or to Atlantis in the Bahammas (if you have ever seen the Olsen twin flick "Holiday in the Sun", it would be there, at the same hotel the movie was filmed at). Oh yeah, for those of you that don't know what Make a Wish is, it is where children fighting life-threatening illnesses or children undergoing six months of treatment or more, get to make a wish that the Make a Wish Foundation tries to fufill. You get untill you are 18 to make your wish.
Well that's all for now! Talk to ya later! Remember to leave me a message in my guestbook if you can.
Lotsa Love,
Maddie
Monday, July 28, 2003 11:07 AM CDT Happy birthday to you,
Happy birthday to you,
Happy birthday Auntie Sara,
Happy birthday to you!
Happy birthday Sara! Thanks for everything you do!
3 months down!
Maddie
Sunday, July 27, 2003 9:38 PM CDT Hi everybody! Other than being a little worn out, I feel great!
Yesterday we all went to the Albertville Outlet mall. We all found a few things and had a wonderful time! Then we went swimming at my aunt and uncle's house. It was lots of fun!
Today we started the day by going to the milk carton boat races at Lake Calhoun. It was interesting to see all the cool boat designs! We also got to see the sand sculptures. Some of those sculptures were amazing, I tell you! Then my Aunt Paula and cousin Camoren headed back down to Nebraska. My other cousins, Brennan and Kyrie ended up staying and will leave next Sunday. It was really great to see them because we don't see each other often, so I'm excited about Brennan and Kyrie extending their visit. After they left, my friends Liz and Dannie came over. We (cousins and all) played outside for about 3 hours! We played tennis, frisbee, basketball, and tag. I haven't been that active since diagnosis, so it was good to get some exercise.
Tomorrow, July 28, I will have known about the tumor for three months. As my aunt Sara said, these three months have been scary, and amazingly great. For those of you that don't understand how I could call these months great, I will try to explain. We have come across so many good things in all of this. We have met so many people along this path that we never would have known existed otherwise. We have been given loads of support and love through every day of our journey. We have learned of many new things (Protocel, Chunyi and Qigong...). But greatest of all, these last three months have opened me up to what really matters in life. I have become such a better person than I have ever been. They have changed life as I know it and I feel so fortunate for things so good to come out of a thing so bad.
Thanks,
Maddie
Friday, July 25, 2003 8:24 PM CDT Hi everyone! I've had a couple really fun days with my cousins!
Yesterday, after Chunyi, we all went to Doin' the Dishes for awhile. It was lots of fun! We also went to Southdale and did some shopping.
Today, I had clinic! The doctor is very pleased with me. They haven't yet called with my blood counts, but we're pretty sure they have come up. Afterwards, we went swimming! Then we went shopping again, and drove playing silly games around the lake.
At clinic today we got the summaries of our first and second MRI. In the second MRI, the tumor was described as less dense and there is a substantial change in the pressure on the fourth ventrical of the pons. This is very good news that the doctor must have forgotten to leave in...Doctors, doctors, doctors!
That's all for now! Thanks for all the prayers, thoughts, and support!
Love,
Maddie
Thursday, July 24, 2003 12:08 AM CDT Hi family and friends! I've had another great couple of days that I must update you on.
Yesterday me and my friends, Mary, Liz, Cody, and Jenny, all went on a picnic at the Rose Gardens! It was a lot of fun, except all the bugs... Then my cousins from Omaha, Nebraska arrived! Camoren, Brennan, Kyrie, and my Aunt Paula are staying here until Sunday. A big welcome to them!
Today, I started my day day off with a Chunyi visit. Wow! It went very well. He had VERY positive things to say and says he sees almost no blockages in my body! What great news! For the rest of the day I'm not sure what we have planned. My cousins are always lots of fun, so we could do anything and have a good time.
Thanks! Have a great day!
Maddie
Tuesday, July 22, 2003 4:01 PM CDT Hi friends and family. I would just like to thank everyone again that came to the party Sunday. It was really fun! Everyone, feel free to stop over whenever, just call first. I love having visitors and catching up with all of you! Also, when you visit and read my journal entries, feel free to leave a guestbook entry! I love reading them, and the whole family finds a lot of love and support in each message.
Today, I had another great session with Chunyi. On the way home, I started to fell kind of sick to my stomach. I came home and tried to take a nap but the nausea wouldn't disappear. After throwing up, I felt better. I still don't feel great, but know this is just the Protocel working!
Love,
Maddie
Sunday, July 20, 2003 8:42 PM CDT Hello everybody. Yet another long day filled with fun! Wait till you hear what all I did.
This morning, my friends, Dannie, Mayumi, and Hanne...I mean Mary and Liz (hehe) accompanied me on the Teen Boat Cruise, sponsered by the Children's Oncology. We had a chance to meet other kids with cancer, and their friends. We were all brought to the boat by limos! Once on the cruise ship we drew, talked, sang karaoke, played cards, and won prizes! We had lots of fun! A special thanks goes out to Vicki and all the other people at Children's that helped organize this fun event!
Then, we went up to the 8th floor and briefly visited Christie. We weren't there long, but Christie, you look great(even drugged up)!
After our visit, I returned home just in time for the party! My fabulous friends and family attended, and again, I had a blast! We played games, ate yummy food, played outside and more! Thanks to everyone who came. You guys are the best!
Though I've had a pretty packed day, I'm still not through. Dannie, Mayumi, Krista, Hanne, Liz, and Mary, are all sleeping over!
Thanks for all your support and prayers! One of the reasons I'm doing as well as I am is because of your support! So, thanks for all the guestbook entries, all the emails, all the praryers and well-wishes, all the cards, all the time spent coming over and seeing me or talking to us on the phone, all the presents, EVERYTHING!
Again, thank you and I love you all!
Maddie
Saturday, July 19, 2003 8:14 PM CDT Hey everybody! I hope you have marked tomorrow on your calanders and are planning to stop over for the party! It's at five, hope to see you there!
Today, I went to my friend Hanne's and helped with her little sister, Greta's, birthday party. Happy Birthday Greta! Then, Hanne and Mayumi came with my mom, sisters, aunt, and I to my little cousin's birthday party! Happy Birthday Ally! We swam, ate cake, and watched a movie. It was really fun!
Don't forget about tomorrow! See you there,
Maddie
Friday, July 18, 2003 7:29 PM CDT Hi everyone! Everything's going great! I feel well and am having a fun summer.
Yesterday my friends Hanne and Mayumi came over. We watched movies, talked and did other normal girl stuff.
Today, I hung out with my little sister and her soccer friends. We played outside for some of the day, and then went to my moms friend's house with a pool. Then, they all left for her soccer game and my friend, Dannie came over. Right now, we are deciding what we shall do tonight!
The party is still on for Sunday at 5 o' clock. Hope to see everyone there!
Thanks,
Maddie
Thursday, July 17, 2003 10:33 AM CDT Hi everyone! I hope everyone's enjoying their week as much as I am!
Yesterday, my friend Dannie came back in town. She came over and me, her, and Charlotte went biking! I remember when the doctors told me I probably wouldn't be able to balance on a bicycle. Well I proved them wrong! Then we met up with my other friend Mary, and we went to Doin' the Dishes, a place where you can paint your own dishes! I closed my night doing Qigong meditation that Chunyi recommends.
This morning, I just got back from Chunyi's. We had another great session and he still has very positive things to say about my progress! I'm still seeing signs of lysing, which is good. One of the signs was my headaches that I had prior diagnosis. Since these are pretty painful, my mom cut back my dose of protocel but just by a little. Today, I'm not exactly sure what I'm going to do, but I'll fill you in tomorrow!
Oh and I forgot to tell you about my wonderful lunch on Tuesday. Ron, my old basketball coach, invited me and my mom to meet him at work for lunch. He works at Best Buy headquarters. Wow! That building is cool! It's like a city in there!
Well, that's about all for right now! Oh wait, no that's not all. The votes are all in, and we say it's time for another party! We're thinking Sunday @ about 5! Everyone's invited. Hope to see you there!
Love,
Maddie
Tuesday, July 15, 2003 9:53 PM CDT Hi everyone! After the "disapointing" news yesterday, I learned the news was NOTHING to be disapointed about! No growth is very good, I was just expecting more, oh well! Yeserday I had another great day! First, I saw Chunyi. He said he sees things before xrays and MRIs do. He sees I'm recovering and close to healed. I finally went to Legally Blonde 2 with Mom, Aunt Tricia, and my friend Hanne! It was really funny! Almost as good as the first, but not quite as cute. Also, I'm already beginning to see signs of lysing (signs its working) from the protocel! Though these signs may appear to be setbacks, kthey are really the opposite! That's all for now!
Love,
Maddie
Monday, July 14, 2003 6:01 PM CDT Hello Everyone!
I'm back from my MRI. The results were different than we would have hoped for. The tumor hasn't shrunk and the aggressive cells still light-up, but on the bright side, it has not grown! I'm a little disappointed, but I feel better than I have in some time, like the same old Maddie! I will continue on Protocel, visits to Chunyi and regular check-ins with the doctors, but have decided not to do anymore chemo right now.
Keep me and my friend Christie in your thoughts and prayers.
Maddie
Saturday, July 12, 2003 6:56 PM CDT Hi everyone! I had another great day! This morning, me, Mom, Ashley, Charlotte, Rich, Keegan and Max (Ashley's boyfriend) got our pictures taken from Peg! Thanks Peg! Then, I went to watch my team play soccer, and to then Charlotte's game right after! I must be good luck because they both won! After, me, Ashley, and my dad went to Southdale and to The Cheesecake Factory! Yum! Tonight, I plan to lay low and prepare for another fun day tomorrow! My MRI is on Monday, so continue to pray for me! Also, keep Christie in your prayers as she fights to get back in remission for her bone marrow transplant! Thank you!
Love,
Maddie
Friday, July 11, 2003 4:07 PM CDT Hi Everyone!
Protocel day #3. The Protocel makes me a bit tired and nauseous, that's why I didn't update yesterday. I am feeling better today. I started the morning with a visit to Chunyi. He says I am doing great. After that, I headed down to clinic to get my blood counts. The counts are on there way back up, slowly but surely. We went to Southdale after clinic to pick up a new shirt for family photos we are having taken tomorrow by our favorite photographer, Peg, who's in town from Wyoming. After that, I went to get my hair trimmed and it looks great and feels even better.
Besides family photos this weekend, I plan to go to watch my soccer team's games, a trip to the movie theater to watch Legally Blonde, and if the weather cooperates, a boat ride on Minnetonka.
Thanks for keeping me in your thoughts and prayers!
Maddie "l'il Mimi" Paguyo
Wednesday, July 9, 2003 10:26 AM CDT Hi everyone! I had a great last couple of days! At Charley's cabin we canoed, kayaked, boated, swam, laughed and much, much more! Then, I returned just in time to go to the American Idol 2 Concert at the Excel Energy center! We had a blast!
This morning, I worked with Chunyi. I will see him again on Friday, before my MRI on Monday, and then on Tuesday, right after my MRI. He (along with many others including myself) is excited to see the MRI results!
Today, I have a massage. I may go to a movie after! I also started Protocel, a nontoxic alternative therapy that we have heard lots of good things about. To learn more about it, check out www.caringbridge.org/page/jakegriffin and click on the links his mother suggests.
That's all for now! Thanks for all your thoughts and prayers!
Love,
Maddie
Sunday, July 6, 2003 7:42 PM CDT I had another wonderful weekend filled with my wonderful family and friends. We spent the 4th on Lake Minnetonka, on Rich's boat. After, we had dinner and watched fireworks with the Goetz's! Thanks for having us Goetz's! It was a very fun 4th of July. On Saturday we went swimming at my aunt Carrie's house. Thanks Carrie! Then, my Uncle Jef and Aunt Brynne cooked a 7 course meal for me, Mom, Rich, Chach, Ashley, her boyfriend Max, my friend Hanne, and her sister Mary! One word, YUM! Thanks Jef and Brynne! Same time tonight?
Today was a low key day. I needed a break after all that fun! Tomorrow I'm going up to Charley's cabin but will be back on Tuesday, just in time for the American Idol concert! Well, I hope your 4th was as enjoyable as mine!
Take care,
Maddie
Thursday, July 3, 2003 5:17 PM CDT Today was another great day! This morning I had my weekly clinic visit. The doctor thinks I look great! We asked for a sooner MRI than we have scheduled, even though it could take months for radiation to show its full effect. I probably will have a MRI either next week or the week after, so continue to pray and visualize. My blood counts have dipped but should be on their way up soon, since chemo was two weeks ago. Then me, Mom, Rich, Ashley, and Keegan went swimming at my mom's friend's house. It was lots of fun! Other then being kinda tired, I feel good! Talk to you later!
Thanks,
Maddie
Wednesday, July 2, 2003 12:51 AM CDT Wow! What a wonderful party last night filled with my wonderful family and friends! Thank you to everyone who shared their evening with me! I had a blast. No more radiation! Thank you Mark, Julie, Dr.Kim, Dr.Pence, and everyone done at the Abbott Radiation Oncology department!
Today Charley and I visited Christie at the hospital. She wasn't in great comfort so our visit wasn't long. Good job with everything Christie! It isn't easy!
Keep both of us in your prayers! Now, it looks like too much of a nice day to sit on the computer! I'll see you later! Thank you!
Love,
Maddie
Monday, June 30, 2003 8:17 PM CDT Hi everyone! Only one more radiation treatment to go! Today after radiation I came home and slept until 1! Wow, I must have been a tired girl! Then we were blessed to see Chunyi once again. As always, he sees good things! Since I'm more tired these days, I came back and rested. I felt a little nauseous but am feeling better now! Don't forget about the party that you're invited to! To celebrate being done, we're having a party! Come anytime after 5:30! Hope to see you there! Well, it's getting close to my 19 pill taking time. I'll see you tomorrow!
Love,
Maddie
Sunday, June 29, 2003 8:37 PM CDT Yet another weekend filled with my friends and family supporting me. A special thanks to all the friends and family that shared the weekend with me!
I hope everyone had as good of weekend as myself! On Saturday, (after sleeping in) I went to my cousins' (Jeremiah and Samantha)birthday party! Jeremiah's now six years old and Samantha is just one! After the party I came home to babysitt with Liz for the neighbors. Nick and Logan had lots of fun with us! On Sunday, Mom, Rich, Ashley, Tricia, Sara, Keegan, and I took the boat out on Lake Minnetonka! We had lots of fun swimming, eating, and laughing in and out of the sun! Tonight, I'm planing just to relax and get ready for another day of radiation! Thanks!
Love,
Maddie
P.S.
I hope Tuesday was free on your calendar, because it's not anymore! Tuesday's my last day of radiation and we're gonna have a party! Everyone is invited so PLEASE, everyone come! Come at 5:30, or whenever you can! So come on over and PARTY (and see my beautiful quilt!)!
Friday, June 27, 2003 7:25 PM CDT I only have 2 rounds of radiation left! We'll be having a party on Tuesday to celebrate. I think around dinnertime, but we'll keep you posted.
Today after radiation, I came back and relaxed with my friend, Liz, my mom and my brother Keegan. Then we went to clinic. The doctors think I'm doing great and my blood counts are still good! After clinic we ate, and then we (Liz, Mom, Ashley, Tricia) all went to Doin' the Dishes, where you can paint your own dishes. I painted a starbox and a tile. Tonight I don't know what I'm doing, but right now I'm hungry and want some dinner!
Love,
Maddie
Thursday, June 26, 2003 10:38 PM CDT With only 3 days left of waking up at 7 (every morning Mon.-Fri.) for radiation, I feel great! No nausea at all today!
This morning my grandma Carol headed back to PA. Thanks for everything Grams! Also, Charlotte left for camp. She'll be gone for a week. The party last night was really fun! Afterwards, Charley, Liz, and Dannie slept over. Today, I spent the day with my marvelous mother, super sister Ashley, awesome Aunt Tricia, and my fabulous friends, Liz and Dannie (and Charley until she had to leave). We hung out, played games, and watched movies. Then, Tricia and Mom took Ashley, Liz and me out for lunch and ice cream!
After dinner, I was overwhelmed to see my healing quilt for the first time! It is amazingly beautiful! Pictures of it are on the way! Thanks to everyone who contributed squares! And a BIG special thanks to Kim for all the time and energy she put into making it! Then, I had a relaxing but energizing massage. After my massage, a friend of my Aunt Alyce's, Barb, who came to pray for me when I was sick in the hospital came to pray with us again. Thanks Barb for all your generosity! Now, I've finished taking all my medicine and am getting tired! Good night!
Oh yeah, this coming Tuesday it's my last radiation treatment and we are going to party! Everyone is invited on over to celebrate and see the quilt! Think dinner time, I'll post the specifics soon!
Wednesday, June 25, 2003 1:49 PM CDT Hi everybody! Only 4 rounds of radiation left, and I'm feeling good! Even though I'm a little tired, I was blessed to see Chunyi today. As always, he had positive things to say and I feel great!
*** New Pictures***
Today, Dannie and Liz are over. We are about to play a fun game! Hopefully, Mary and Charley will be over also, after they finish some of thier plans. Tonight I plan to go to a party and party hard!!!!!
Q: What do you get when you cross a camera and a crocodile?
A: A snapshot!
hahaha just thought I'd add some humor to your day! Have a good day!
Thanks,
Maddie
Wednesday, June 25, 2003 1:49 PM CDT Hi everybody! Only 4 rounds of radiation left, and I'm feeling good! Even though I'm a little tired, I was blessed to see Chunyi today. As always, he had positive things to say and I feel great!
Today, Dannie and Liz are over. We are about to play a fun game! Hopefully, Mary and Charley will be over also, after they finish some of thier plans. Tonight I plan to go to a party and party hard!!!!!
Q: What do you get when you cross a camera and a crocodile?
A: A snapshot!
hahaha just thought I'd add some humor to your day! Have a good day!
Thanks,
Maddie
Monday, June 23, 2003 7:40 PM CDT Hi everyone! On Sunday, I hung out with Liz, Dannie and Chachi. Since I was kind of tired again, we watched movies, played games, and other normal girl things. After feeling a little nauseous, I was excited to have Liz sleep over!
Only 6 radiation days left! We also met with Dr. Kim, the radiologist. He said I'm doing great! Then, we had another visit with Chunyi! He also thinks I'm doing great! After that, I came home and Liz, Chachi, Mom and I watched 2 Weeks Notice. Tonight, Gramma, Tricia, Sara, and I had a fun girls night out. That's about it for now!
Love,
Maddie
Saturday, June 21, 2003 3:11 PM CDT
Hi everyone! Chemo yesterday went very well. C harley, Liz and Mary came down and were with me the whole time! We made frames, saw a cool dog, took lots of pictures, and more! I was out of the clinic by 2 o' clock feeling good. Then, to celebrate another round being done, Liz, Mary and Catherine slept over! Today, I'm kinda tired, so me and Liz are just gonna lay low. Thanks for all your ongoing support!
Thursday, June 19, 2003 6:31 PM CDT
Hi everyone! Yesterday and today were again, both very good days! Charley's party was a blast! Radiation went well this morning! Only 8 rounds left! Today I went swimming and I feel great! Oh yeah, and my Grandama Carol from PA came home. Tomorrow is my second round of chemo, so please keep me in your thoughts and prayers. Thanks!
Wednesday, June 18, 2003 5:00 PM CDT
Last night, I didn't sleep very welland after radiation, I could barely keep my eyes open. Well, after another great session with Chunyi and a really nice afternoon with Terrel Jones, the strength coordinater for the 49ers, I'm not tired at all! Tonight is Charley's going away party, so I'll be there! Thats all for now!!!
Tuesday, June 17, 2003 10:17 AM CDT
Only 10 rounds of radiation left, and I feel great! Today after radiation, we stopped by Children's and got to meet Karla, Christie's mom, who was very nice. Today, Charley is going to hang out over here, and maybe a couple other of my friends. Then, I'm going with Charlotte and my mom to Southdale. They're meeting some of Charlotte's friends and their moms to go shopping for camp! Thats all for now! Thank you for your prayers for Christie and her family, and thank you for your prayers for me!
Yesterday, I messed up on what Christie's website is. It is www.caringbridge.org/mn/christie Thanks!
Monday, June 16, 2003 10:49 PM CDT
Today, we got some bad news after the movie. If you don't know her or have never met her before, Charley is one of my closest and best friends. Her cousin, Christie was diagnosed with leukemia last year. After being in remission for five months, she relapsed. As you continue to pray for me, please pray for Christie as well. I haven't actually met her but I've heard how strong she is as well. She also has a website and email. Please check it out.
www.caringbridge.org/christie/mn
Monday, June 16, 2003 6:03 PM CDT
Hi! This morning the machiene at radiation wasn't working so we had to come back later to get #19 done! We also had a great session with Chunyi. Then, mom took Chachi and her friend Emma, and me and my friends Charley, Mary, and Liz! Were just having dinner now and tonight (cross ur fingers ill be awake!!) I;m gonna try to go to a movie with some more of my friends!
Sunday, June 15, 2003 5:28 PM CDT
Hey! I had another funfilled weekened with my aunts and Ashley. We went out to eat, we swam, and we went out to eat again! Today, Ashley and I went out to our grandparent's house to celebrate Father's Day. My mom and Chachi got home safely this afternoon as well. They both had a good time but are glad to be home! Charlotte also wants everyone to know her team won 2nd place! Tonight will just be a low-key night. Radiation again tomorrow, but also Chunyi! That's all for now!
Friday, June 13, 2003 2:30 PM CDT Hi everyone! Sorry for the late update but I've been busy with lots of fun things! Today was radiation number 18! I also visited the clinic and they said I looked great! My blood counts were also normal. My mom and Chachi and Keegan are in Sioux Falls for Charlotte's soccer for the weekend. Tricia and Sara have some fun things planned, but if you're bored, give us a call! Thats all for now!
Wednesday, June 11, 2003 8:04 PM CDT Today was a very good day! First, we had radiation #16 and met with the radiologist. Then over to Mcarthy Gym for Tommie Basketball camp!!! I had to leave at 10:15 though so we could go see Chunyi. We didn't actually work with Chunyi, which in the end worked out fine. He was very busy and there were a TON of people waiting. We saw Jim Nance, who we've seen once before. I felt some of the same things with him as I do with Chunyi! The same things, but in a different kind of way. After that, me, my momma, and Keegan had some lunch. Then, Cody, Mary, Charley and I went scrapbooking from about 2 - 5:30. It was so fun! It felt like 30 minutes too! After that hooray-hoorah Mary, Charley, and I got manicures and Mary and Charley got a pedicure too. I was rushed home to attend to my massage (it felt really good). Dinner followed and now this! That's all for now! Thanks!
Monday, June 9, 2003 4:30 PM CDT Today was #14! It went well and I feel great! Then off to school! I recieved a pile of rewards and certificates and we did some other activities. Then, we ate lunch and walked down to Minnehaha creek and back!
I feel good and the day went great! Tomorrow marks the last day of school, but also I'm halfway through radiation!
Friday, June 6, 2003 4:54 PM CDT Another week of radiation done! Actually, I'm almost halfway done! Today was a very good day! I went to all of school, took some tests and school (work) is done! Now we get to do the fun end of the year stuff!
Tomorrow, Saturday, I'm inviting anyone who really wants to learn Qigong (Chunyi Lin) over. Come for dinner and a Chunyi video! FOR ACTIVE PARTICIPANTS ONLY! (~Julie hehe)
Thursday, June 5, 2003 12:43 AM CDT Hi everyone! Today I had radiation number 12. Then I treated myself to a belguim waffle with strawberries. We had a clinic visit shortly after. We waited...and talked and waited..and waited... Then we had my blood drawn and my blood counts look great!
After clinic, I met with the intuative today over the phone. What she said was very promising. So far, we've had a great day! I'm eating lunch right now and then we'll see about getting back to school!
On Saturday, anyone who wants to learn Qigong is invited over to do so. This will benefit everyone! So come over for dinner and a little Qigong video!
Tuesday, June 3, 2003 8:08 PM CDT 10th day of radiation! I feel great. I went to all of school, had a yummy couple of dinners (haha) and did some homework... Tomorrow I see Chunyi! That's all for now!
Monday, June 2, 2003 8:41 AM CDT
Hi everybody! Sorry I haven't updated you for awhile but my computer is down! This weekend I went to the farmer's market, Charlotte's soccergame, and of course my favorite place, the grocery store. Then we had a big quilt sqaure making party with lots of our friends and family. We had lots of good food and lots of good laughs. On Sunday I had friends over to do homework (yuck) and then we went swimming (yay!).
Today we had radiation number 9. Everything went well, but I'm ready for a nap! Hopefully I'll get to some school but at 3:20 today, I get to see Chunyi! I'm so excited! Well, that's all for now~
Friday, May 30, 2003 5:17 PM CDT Hi everyone! Today I had radiation and a clinic visit. Everything went great! Then I went a little late to school but stayed the full day. Right now I have Liz, Charley, Mary, and Amanda over and we're playing with Keegan. Dinner's cooking! So excited! I think tomorrow we're planning to take the boat out on Lake Minnetoka. We'll have to see. Hope you have a great weekend!
Thursday, May 29, 2003 5:40 PM CDT One long day down! Today I had my 7th day of radiation. It went good! Then we stopped by school and dropped some work off. Keegan got to spend a couple hours in fifth grade with Chachi's teacher while my mom and I went to visit Chunyi. I also met with Jim Lance, another healer who teaches children. With Chunyi, my mom mentioned the little difficulty I had swallowing. Within five minutes of seeing him, my mouth had produced so much saliva I had to swallow several times. It is now easier to do so! I also felt a pulling in my head. It was very cool! After Chunyi Tricia, Keegan (we picked him up), my mom, and I all went out to lunch at Lucia's. It was yummy! After that we got some really cute hats at Urban Outfitter's. Then me and my mom took Keegan off to the Goetz's and headed to St. Paul to meet with Margery Wells again. We are still debating whether we will continue to see her, but everything went well! Tomorrow after my 8th radiation, I have my blood taken for the first time. That's where they my measure blood counts, which chemo will make drop. That's all for now! Love you!
Wednesday, May 28, 2003 8:16 AM CDT H everyone! I'm back from my 6th day of radiation and feeling good! I'm kind of tired but I plan to go to school today. Everythings going well!
Tuesday, May 27, 2003 8:27 AM CDT Hi everyone. It's Tuesday and I just got back from radiation. I'm feeling good and have a big day ahead of me! I'm going to go to school for awhile to say hi to everyone. At 2:45 I have a clinic appointment to make sure my lungs are strong. Then at 4:00 I meet with Master Lin. I'm so excited to see him again! Well, here we go!
Sunday, May 25, 2003 11:18 AM CDT Hey everyone! Today is Sunday and I'm back home! I came home on Friday and just been too tired to update anything. Today I'm feeling good. Yesterday Mayumi and Hanne both came over and we watched movies and just had kind of a low key day. Today I want to be up and moving! If you feel like coming over, call ahead and come on over! I'll update you soon! Hope to see you all!
Thursday, May 22, 2003 5:09 PM CDT
Good news! Well, today was just as boring as yesterday but I felt good! I had my third day of radiation and it went well. Tomorrow I have another round and then I get chemo shortly after. I have another chest xray tomorrow and that's it. After chemo though, I get to go home! I can't wait! Everyone that was planning to come down tonight or tomorrow, still do! I'm excited to see you!
Thursday, May 22, 2003 4:39 PM CDT Great news....Maddie is well enough to be discharged from the hospital tomorrow after her first chemotherapy treatment in the morning, so we are excited to have her home for Memorial Weekend! The doctors are very pleased with Maddie's progress since Monday. Thanks to everyone for their postitive thoughts this week to get her over this small hurdle. She passed the test with flying colors!
Wednesday, May 21, 2003 6:50 AM CDT
Hi everyone! Today I'm already up at 7 and ready for my second day of radiation! I'm feeling 100% than before Monday and best of all I have my appetite back! I checked off riding in an ambulence on my things to do and feeling like dirt. Hopefully that's all done. I got moved to the eighth floor last night which is a TON better than that other room in Intensive Care.
I just wanted to thank everyone for all the love and support throughout this bumpy road. We needed somewhere to start building from and this must have been it! So, we've put the cement down and now were ready to start on building!
I also wanted to invite everyone to visualize radiation shrinking and getting rid of the tumor at 7:45 every morning. We started yesterday but anytime will do. If you would be willing to pray with me at 7:45 to about 8:00, please feel free to! Sorry for the short notice! Well, I have another day to prepare for! Thanks!
Tuesday, May 20, 2003 8:12 AM CDT Maddie is feeling OK this morning but had difficulty breathing late yesterday afternoon. She hadn't felt well all day and by late afternoon was rushed to the hospital. Her oxygen intake was way below normal and she was admitted into PICU (Pediatric Intensive Care) last night at Children's. She was given a chest x-ray and it turns out she has pneumonia which contributed to the breathing problems. She was given a variety of antibiotics and IV 'stuff' and had a CT scan to see if there had been any changes in the tumor and that proved negative.
Within an hour of being at the ER, her breathing was back to normal, although she was on oxygen. They chose to keep her overnight and she is OK this morning. Ironically this had nothing to do with the radiation that was supposed to start yesterday morning. The Doctors were going through the last adjustments on the 3D Conformal machine and there was a problem matching the computer generated plan with the actual administration causing the beam to be mis-aligned. They were to make adjustments and we were re-scheduled for this monring (Tuesday). Depending on how Maddie feels will determine if we start the treatment this morning. We're hopeful for a better day today.
OK, I just spoke with Julie (who stayed overnight at the hospital) and she tells me the pneumonia is now gone (I'll try to find the name of that drug!!!) and that Maddie is feeling a lot better so she is starting radiation at 9am and I need to get down there - we'll keep you updated...
Friday, May 16, 2003 2:21 PM CDT Hi everyone! Today is Friday and I'm taking a day off of school! I didn't sleep very well last night and I am very tired! If you didn't here, we met with Margery Wells yesterday. She is a practicinar of traditional oreiantal medicine. She did some acupuncture and acupressure. She also completly altered my diet! No kind of food is a good present anymore. Thanks! On Monday I start radiation. I'll keep you posted!
Wednesday, May 14, 2003 3:49 PM CDT Hi! I just got back from camp and it was a ton of fun! I did the ropes course too! Tomorrow I'm being "entered" long-distance from this Chinese holy person. Haha. Right now I'm just eating and relaxing and feeling good!
Saturday, May 10, 2003 1:56 PM CDT Hey! It's Saturday and everything's going well! I just got back from lunch with my sisters and uncle from California and I'm about to go watch Charlotte play soccer. Tonight I'm going to a dinner party at my Aunt and Uncles. Should be fun! I'm still eating as we speak...yeah, this medicine has definently increased my appetite! I'm eating like a pig! On MOnday we go to Audubon! I'm so excited! Thanks everyone for all the messages and if you stopped by the bbq too! I had fun!
Thursday, May 8, 2003 4:54 PM CDT Hi! I'm just on my way to another MRI. Today I had a cat scan and 3-d picture taken or something. After the MRI, I'll know a lot more but for now I just wanted to invite EVERYONE over tomorrow night for a barbaque! So, come on over. Stop over, or come and eat! You can just come, you don't need to call or anything. Hope to see you here at the house!
4441 Colfax Ave. So.
Wednesday, May 7, 2003 4:05 PM CDT Hi everybody! As you all know, the musical was last night and it went pretty well! Today I met with Chunyi again. I do tomorrow as well and then I have a cat scan and MRI with the radiologist afterwards. I'm feeling good and I'll be at school for only awhile tomorrow. I'm so excited for Audubon!
Monday, May 5, 2003 12:31 AM CDT Hi everyone! I just got back fm Chunyi Lin's house again and I am going to the radiologist soon. I'm feeling good and I just wanted to thank everyone for all of the cards and flowers and messages and everything! Thanks! Next person to say anything about the chocolate chip cookies gets it though! I'm warning you!
Sunday, May 4, 2003 1:27 PM CDT Hi guys! Today I went to this spirtual healer guy's house. His name was Chunyi Lin. It was kinda cool how he did it and stuff. I'm feeling good and hopefully I'll be able to come to school for awhile tomorrow! Im gonna go take a nap. Cya!
Saturday, May 3, 2003 7:31 PM CDT Hey! Today me and Hanne and Mayumi all went to a spa! I got a facial and manicure and little makeover done. It was lots of fun! I'm feeling great and we're all hanging out here watching our new cable! I'm soon to go to Charley's house and see some of my friends! Cya. Thanks! xox
Friday, May 2, 2003 9:37 PM CDT
Hi everyone. I just got of surgery a few hours ago and I'm home on a new labtop computer watching cable tv! I'm a little sore from the stuff but I'm okay. I got this little port put into my chest so they can give me medicine without always having to poke me. Thanks for all the support so far! We're a day closer to the end of this!
Friday, May 2, 2003 3:01 PM CDT During the last few days we have researched the disease and treatment options through the Brain Tumor Consortium, including Mayo Clinic and Children's Hospital. We are in the final stages of deciding the course of treatment which will include radiation and chemotherapy. Maddie is currently undergoing minor outpatient surgery to implant a main-line to ease the administration of therapy. She picked out the latest Harry Potter video to view in the recovery room! Maddie seems in great spirits, considering the circumstances, and we think her experience this week has made her want to be doctor when she graduates from college. Maddie has insisted that no treatment start until at least next Wednesday, as she has a role as a nun in the school musical on Tuesday evening - the Sound of Music. We just heard that she is in the recovery room after surgery and need to sign off to be there when she wakes up.
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