History

Wednesday, April 10, 2013 12:59 AM CDT

Hello family,
Just saw this definition of the word "perseverance" and BOTH meanings fit Maryah perfectly.

per·se·ver·ance
/ˌpərsəˈvi(ə)rəns/Noun

1.Steadfastness in doing something despite difficulty or delay in achieving success.

2.Continuance in a state of grace leading finally to a state of glory.

Especially love the 2nd one!

Faith, hope, love...
Zach, Maryah's Dad...and (retired) Ringman

________________________________________

“What the caterpillar calls the end, the rest of the world calls a butterfly.”

-Lao Tzu

Thursday, January 5, 2012 10:10 AM CST

If you are reading this...you are well connected. Thank you for choosing to stay connected.
________________________________________________________________________________

“What the caterpillar calls the end, the rest of the world calls a butterfly.”
Ż Lao Tzu_____________________________________________________________________________

"When Great Trees Fall"
Maya Angelou

When great trees fall,
rocks on distant hills shudder,
lions hunker down
in tall grasses,
and even elephants
lumber after safety.

When great trees fall
in forests,
small things recoil into silence,
their senses
eroded beyond fear.

When great souls die,
the air around us becomes
light, rare, sterile.
We breathe, briefly.
Our eyes, briefly,
see with
a hurtful clarity.
Our memory, suddenly sharpened,
examines,
gnaws on kind words
unsaid,
promised walks
never taken.

Great souls die and
our reality, bound to
them, takes leave of us.
Our souls,
dependent upon their
nurture,
now shrink, wizened.
Our minds, formed
and informed by their
radiance,
fall away.
We are not so much maddened
as reduced to the unutterable ignorance
of dark, cold
caves.

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.

Thursday, October 13, 2011 9:25 AM CDT

Good morning,

I can't quite express the swelling of grief this morning that has arisen simply because of a change in the Caringbridge "set up".

Obviously as time moves on technology changes and becomes faster, "easier" and more appropriate for the times. In this case it has brought an extreme amount of sadness that in fact time is moving forward when I still feel stuck in time.

Since Maryah's diagnosis in 2004 we have viewed many friend's CB pages and have noticed the change in format and it was inevitable that this would be the permanent change. It simply reinforces the permanancy of her absence today.

This is a reflection of the many changing emotions during my days. Some days you simply go with the flow and other days you come to a screeching hault when you realize "Holy cow...forever? Really? It has to be forever?" Those moments are hard to hurdle most days and take me down almost every time. It means nothing how extremely productive or motivated I was just the moment before that thought hit...it's done...gone and over. I can no longer function past the pain in my chest that comes each time I think that she won't be calling me today to say "I love you, Mom". These are the days when I yell at Him and want answers..."WHY? How could you take my mother and my daughter? HOW could you let me hurt this deeply again and expect me to live through it." I find myself negotiating with God during these moments "I will do anything you need from me, I will serve you every moment of my life if you will just insure that my passing comes before anyone else I love". I am sure that sounds ridiculous but nothing about grief seems sane quite honestly. Sometimes after my logic returns I remember that God's Grace is His gift to me no matter what I do or don't do to please Him. Thank you God! If it weren't for your Grace...well...who knows where I would be today.

I wish time would stand still for me, for all of us that grieve Maryah's loss and the loss of our other loved ones. I wish that some days we could just stand still, all of us and simply relish in the memories of peaceful and joyous times.

As I am studying with Morgan for an upcoming Science test this week, we are reading about the different types of motion one type of motion is constant motion and on this Earth, in this world we are in constant motion. It will not stop just because our mind tells us it should. Our hearts are in constant motion even when they feel completely broken. Then there is variable motion which slows down, speeds up, turns right and left, forward and backward and although the world I am on is in constant motion...I am in variable motion and they seem to resist each other at times.

The expectation that grief begins to lessen after a year or so...is not a realistic expectation when you have lost your child. The grief is as strong as it's ever been. Unlike the Caringbridge format...that will not change.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, September 15, 2011 9:12 AM CDT

It has been some time since I have brought myself here to share. It seems like such a distant part of my day-to-day routine even though it feels that Maryah was just with us yesterday.

In this past month we have learned that another student at CDH has a bone sarcoma and will be enduring chemo to try and rid her body of the cancer this fall. We will be praying for her complete healing during this time. Also, the Watters family has had to say "see you later" to their adopted son, Victor and only two days after laying him to rest they find they are facing another cancer "scare" with their son Eric as he has a mass on his lymph node located in his neck. They are in deep need of our prayers and for all to hold that family up as a whole but especially Eric.

We celebrated with the Children's Lighthouse of MN "crew" at the annual Children's Music Festival this month as well. It was a lively celebration where kids were laughing and dancing and having fun and parents perused the silent auction and helped raise money for this very important mission. We heard family stories that help us understand the great need to open this hospice/respite center for children and their families. An old school friend of mine passed away this week as well and I am thinking of his family and their enormous loss. School has begun, dance is back in full swing and the weather has changed dramatically overnight. It seems that yet another year is coming nearer to a close and some chapters of our lives are closing along with it. With that being said my faith allows me to believe that there are more chapters to be written in the months and years to come. I only hope I can be the author my mother so wanted me to be.

Recently, Morgan and I spoke about Maryah and why she had to leave us so soon. Many times in my life I have realized after I spoke to someone that God had spoken through me by giving me the words that would eventually help me see the grand picture and also help the person I am talking with. One time I vividly remember this is when I was sitting with Maryah in the bathroom the night of the biopsy and having to explain that she had cancer. God spoke through me then because I had no logical explanation in my own mind. This conversation with Morgan was another time that I will vividly remember as a time God spoke to my child through me. I began the conversation by telling Morgan that Maryah had a job to do here on Earth. I asked her "wasn't Maryah lucky that she KNEW her job and she was able to do it so well?" Morgan agreed she was in fact lucky. I explained that God gives us ALL a job to do but some of us just need to work a little longer to figure out just what that job is that is intended for us during our earthly life. I explained to her that Maryah had learned her job early on, even before she was diagnosed with cancer and she began her work at a very young age and had been able to bring SO many people back to their faith, to unite so many people in faith and to remind everyone around her what is truly important...the gifts of faith, hope and the greatest of these LOVE. I let Morgan know that I feel Maryah did her job well and when she had done all she could do for the Lord he brought her home to Him to rest and we could be happy that she did that job so well and that she finally got to rest.

I went on to explain to Morgan that since we each have a job and we still need to learn what that job is (myself included) we should pray every morning when we wake and are getting ourselves ready for the day. When we pray we should just simply ask "What would You have me do today Lord?" I told her that I was glad that we were still here and able to work to glorify Him but that I will be equally as happy when it is time for me to rest. I told her that we must be focused enough on Him to "hear" him when he directs us to what he would like us to do to serve Him. I think she understood. I think she spends some time daily trying to understand her work here and what she is supposed to do for herself and for others. I know at least, that she is thinking about it and for that I am grateful. It has kept me mindful as well.

My words are never perfect, my grammar sometimes fails to come to mind, my spelling leaves something to be desired but my mother asked me to write, she named me an author and asked me to write. I get a gentle nudging now and again to write and I have to imagine that it is Mom alongside our Creator letting me know I have a job and this may be part of it whether it be writing on paper, journaling/blogging or simply helping to "write" the chapters of my life. It is fun to see when people figure out their jobs and flourish...my sister the creative artist, my brother the teacher and coach, my husband the fixer...I hope that I am focused enough to hear His direction each day so that I might serve Him well. I hope that I have provided a sense of peace for Morgan around Maryah's passing in that she can be confident that Maryah's work is complete and now she is resting peacefully.

I pray today for each of you that you would begin to realize YOUR job and that you are able to serve Him well.

I believe the Lord's plans for us are great, I believe still that absolutely everything happens for a reason. I believe...

Love and Blessings,
Rachel/Mama
Ma Perez

Monday, July 25, 2011 11:00 AM CDT

There's a student at Cretin-Derham Hall named Cole in Maryah's grade - Senior this year - who, for his Eagle Scout project, provided leadership in organizing a group to collect items and build a butterfly garden in Maryah's honor. He ordered a plaque that will go on or near the bench and birdbath.

It's a beautiful, quiet space; a place that Maryah would love to go...to just BE.

Cole - on behalf of Maryah and our entire family..."thank you". You're a gentleman and this project is a reflection of your heart and mind. I hope to raise my son to be such a man. Job well done.

As Maryah would say, "Enjoy this day...God bless". This butterfly garden is a blessing and we will spend many hours 'enjoying'.

Zach/Maryah's Dad & Ringman (retired)

Check out 38 pictures of her garden at:
http://www.facebook.com/photo.php?fbid=10150241098388869&set=at.10150240452993869.320807.610278868.1507737236&type=1

Thursday, June 30, 2011 10:44 AM CDT

It's been so long since I have come to write here. I feel strange sometimes since this is so often where I came to write to describe the fight in all of us. Now I feel so defeated and rather useless at times. I know that this is not the case but never-the-less I still feel this way. There are so many stories that I would love to share and lately I have been writing them in a different forum so I am glad that Zach is sharing also.
One of my favorite memories was from the day that Maryah was born. I had dreamt about Maryah and Morgan both before they were born. When I dreamt about Maryah I dreamt about this grand bouquet of pink baloons in the hospital room. Zach was there, my mom was there and we were happy and the sun was shining.
On May 7, 1994 it was a sunny day, it was warm and the flowers were blooming and that afternoon (she was born in the morning)as I was relaxing with her in my arms there was this glow about the room and there beside my hospital bed was my picture of my mom, Zach was resting near by and in walks Maryah's Godfather, Sam. He was carrying a VERY large bouquet of balloons. In fact, there were so many of the helium filled balloons that he set off the hospital fire alarms. Seeing as a hospital is first response...well all the fire trucks came blaring up the avenue. I had no idea it was because of those balloons until a Nurse told us. I then hid them in the bathroom! We knew then that our life would be a wild ride with lots of fun and funny times. Maryah never ceased to make me laugh from the time she was a little baby until the very day she passed. I found a poem that I can relate to and I thought I would share:

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Author Unknown

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, June 30, 2011 10:44 AM CDT

Monday, June 20, 2011 2:13 PM CDT

Here is a string of gifts that Maryah tied to us...and I'd like to tie it to you now.

When Maryah was 2 or 3 years old she got so excited when we drove past the Cathedral that she shouted "CHUUUUURCH!" from her car seat. That first time I may have swerved a little since I was not expecting my baby girl to scream suddenly from the back seat. As time went on this became a tradition. Little did she know, at that time, the humble pride I felt a few years earlier when I stood on those back steps at our graduation and held her in one arm and my diploma in the other. Though I knew THAT was NOT the order in which to do things (have a child, then graduate), we knew that Maryah was bound for greatness!

Whenever she'd shout this we'd wonder what it was about the Cathedral that would make her get so excited.

Maybe, just maybe, from somewhere deep within she knew, with respect to the Church, the Cathedral was to be/become a monumental reminder not only of faith, but how to LIVE our faith.

For years, including the last time we drove by the Cathedral together, we all shouted "CHUUUUUURCH!" together. To this day, including when by myself, I/we shout when passing by the Cathedral...and my girls chime in to help continue this lovely ring of excitement that all began with Maryah Therese.

Living without Maryah physically here is something we endure daily. I guess this is part of the cross we must carry. There are so many memories that keep us company and I know you cherish yours as we do ours. If or when you feel moved, please keep sharing your memories...or its okay to keep them for yourself. Either way, thank you for continuing to be part of Maryah's life. Faith, hope, love.

Zach/the Champ's Ringman (retired)/ and STILL Maryah's Dad

Friday, May 20, 2011 12:11 AM CDT

One year ago today was Maryah's "celebration of life" (as Morgan insists we call it, not a funeral).

Maryah wanted to have her celebration at the Cathedral. For years we'd take drives usually around sunset and when weather allowed we'd have the windows down and loved the wind blowing through our hair...or over our bald heads.

Over time we'd always end up at the Cathedral. A few months before Maryah passed we pulled into the parking lot and Maryah recalled the story of how, after our CDH graduation ceremony at the Cathedral in 1994, with Maryah about two weeks old, Rachel and I walked out onto the back steps, and as our class cheered and celebrated, throwing their caps in the air, I stood quietly and held Maryah in one arm and my diploma in the other. Maryah tied her life, that moment, the grace and thankfulness we felt, and the celebration with what was to come by stating, "we should have my funeral here". So, with the help of Father Steven Adrian at St. Matthew's on the West Side of St. Paul, who baptized Maryah, we were able to help Maryah reach this mountaintop where we could all gather - well over 3,000 of us - to feel God's presence and truly honor Maryah's life and how she taught us to live fully. Her message to the world..."faith, hope, and love and the greatest of these is love".

We enjoyed one of Maryah's favorite gospel songs, "Precious Lord, Take My Hand", a moving rendition of "Nearer My God to Thee" on the violin and cello, and the Cantor who sang "Ave Maria". The two other priests, along with Father Adrian, were Father Forlitti (a long-time family friend), and Father Johnson from the Cathedral. Father Adrian drew a parallel between St. Therese and Maryah Therese, how they both lived faithfully, both suffered greatly, passed away at a young age, and yet reminded us of living fully in moments large and small. After the celebration we all walked out the back doors, Rachel and I carrying her remains paused for a moment before everyone followed, and we acknowledged that moment 16 years before at graduation when we stood on those same steps with her for yet another mountaintop experience. As everyone filed out of the church we played Bob Marley's "Don't worry about a thing...cause every little thing gonna be alright"...while Brother Michael Lee read some of Maryah's favorite quotes that I found by her bed the morning after she passed; quotes she had written to help stay focused on what truly matters in life...and we released seven doves...like Ryah wanted.

For those who want to feel closer to the Champ, I would highly recommend going to the Cathedral when it's quiet just to pray. Maryah loved going there to pray...we'd walk, or roll, in the doors along Selby and sit in a pew and just BE for a little while. Then we'd kneel down and say a prayer. Then we'd walk around in back of the alter and starting from left to right see St. Anthony, St. John the Baptist, St. Patrick, St. Boniface, Ss. Cyril and Methodius, and last but not least St. Therese. We'd stop and say a prayer WITH St. Therese. (As Catholics just to clear up any questions, we don't pray TO Saints, we pray WITH Saints for prayers of intercession for we believe even in death we are still connected with each other through the Body of Christ - some people had questions about this and wondered also about the Rosary we recited before Ryah's celebration began). It was a sight for sore eyes to watch Maryah refuse help and to slowly kneel down on her left knee while having to straighten her right leg to the side after a surgery or while battling through the pain of tumors to pray with St. Therese. I wish I had a picture of that...like we have of her sitting in her wheelchair praying with St. Therese (see first picture here in album).
Now, when I go, or when Mo and I go, we walk the same path as we did with Ryah. You can also see a very moving, exact replica, of Michelangelo's "La Pieta" in the back of the church that Ryah also loved. It depicts Mary holding the body of her son; the Son of God. Rachel, Dan, and I and others who have experienced being there and holding our child like Mary relate to this beautiful work.

We will never forget! As Maryah would say, "Enjoy this day...God bless".

Zach/Maryah's Dad/Ringman (retired)

Thursday, May 5, 2011 8:25 AM CDT

Happy Cinco de Mayo!

Growing up on the "West Side" of St. Paul, today was/is a big day in my life and the life of my friends. We had a lot of fun which I tried to carry on into the lives of my children.

Last year on this day Maryah was already settled in to Our Lady Of Good Counsel Hospice Center and since it was a little more difficult for her to get out I couldn't do much to celebrate the day but I did have a dear childhood friend set us up with some amazing authentic Mexican food for dinner. It was like going back to my childhood days of hanging out at friends houses where there mothers would cook and feed us all while we lazed around being teenagers. God love all those mothers that put up with our shenanigans! So a year ago today we ate good food together, we enjoyed each others company and we remembered the day of celebration.

Within those few weeks that Maryah was at OLGC she developed a great love for chocolate/custard filled bismarks. This has been one of my favorite memories of her last weeks. She would call her Dads (Zach AND Dan) every night that they were coming to stay with her for the night, to stop at SA near by for the 7:00 p.m. delivery of fresh donuts. Each time they would stop, the guys would clean SA out of these donuts before they even reached the case. I think SA started to "get it" and ordered more...too bad for SA, that just meant the guys would then buy MORE donuts for her!

Maryah didn't eat much at this point but she LOVED those donuts. She ate them one after another getting chocolate on her mouth and fingers and she would lick each finger clean after she finished. She would then proceed to wash them down with a diet coke or a sweet tea from McDonalds. These were her drinks of choice.

This was always a humorous thing for me to witness because Maryah was generally pretty concious of what she ate and watching her weight. At this point, she didn't give a darn! She ate them happily and even woke up in the middle of the night on occassion to reach for a donut and eat one if she couldn't sleep. While sleeping in the bed across from her one night I heard the rustling of donut bags so I looked over and there she was reaching for the bag, just out of her reach. So...at 1:30 a.m. I got up out of bed and we had a donut together followed by some laughs, some diet coke and more sleep.

The next morning I remember telling her that she had probably devoured about seven dozen donuts in the past 10 days and she looked at me with this look of pure "I don't give a crap" on her face and said "MOM! I would rather have it in my obituary that I died from a donut and diet coke overdose than have it read that I died from cancer!" WELL OK THEN! That shut me right up! That girl never ceased in making me laugh! God love(s) her!

This year Maryah's birthday week is the same as it was the year she was born. She was due April 30th and we waited patiently until I went into labor early Friday morning May 6th. Late that night we ventured to the hospital and at 10:05 a.m. on Saturday, May 7, 1994 Maryah Therese Emerson Tift was born at 7lbs. 11oz. and 21.5" She had beautiful jet black hair, a whole head of thick hair. She had blue eyes and beautiful skin. She was tiny and perfect and she lit my heart on fire forever thereafter! The very next day, Sunday, May 8th I celebrated my first ever Mother's day. She made me a mama! I am so proud!

This year, in honor and celebration of Maryah's 17th birthday on Saturday, May 7th I invite you to enjoy donuts of your choice and maybe even a diet coke or sweet tea (if you can muster it) for breakfast. It truly is the breakfast of CHAMPIONS!!!!! Our Champion!! We will be enjoying our donuts as a family that morning and dinners later in the evening. We intend to celebrate this day in style and exactly as we always have for 17 years...as a family and with great and pure joy, laughter and love!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, April 12, 2011 3:46 PM CDT

It was one year ago yesterday that I went to pick up Maryah and Mo from Rach and Dan's house for their week to be with me...little did we know that was Maryah's last time there.

It was a beautiful, sunny day and we enjoyed a drive with the windows down...and wound up meeting Twila and the girls at Creamy Cone for some ice cream. Champ asked to stay in the car so I backed into a spot where she would be right next to the picnic tables so we could all be together. I ordered some treats for all the girls and brought the shake to Ryah. As we sat there enjoying time in the sun with our ice cream I noticed Maryah take a bite and have trouble swallowing. Twila said Mo could stay with her and the girls and play and I started to drive Maryah back to our home...but when I asked her how she was doing and she didn't respond right away we burned rubber to the ER.

We rushed in and they attended to her right away, using a tube to suck out her spit, which was making it difficult to breathe. After what seemed like an hour, Ryah was okay and breathing better. That was the first time I could not talk in the hospital...I thought she was going right then and there. After things calmed down I remember her laying in the emergency room, holding that tube and listening to the sounds, machines beeping, with a look of thankfulness and relief on our faces. While we stayed there for observation, and until a room opened up on 5B, we played the video that Kayla made of our bucket list trip over and over on the giant flat screen TV they had hooked up to the computer...and THAT brought us more thankfulness and relief.

After that we got into a room, then eventually into the big adopt-a-room again where we were for the next few weeks. Even though these memories can be painful...I/we are thankful we didn't lose here on that day...only to still have her with us for the next month and four days.

Love and grace,
Dad
________________________________________________

The last week that Maryah was with me at our house was such a great week. I feel the hurt and sting from the memories of Zach's post and learning very quickly that sunny Sunday afternoon last April, Maryah wouldn't join us back at home. I also remember that the week prior to arriving at the U of M for her final stay we had the most glorious, fun-filled, joyful week. We began our week with a family dinner at Red Lobster to celebrate Maryah and Dan's b-day together. Dan gave Maryah her gift before we left, the matching tattoo he got with her name wrapped on his wrist so he would always have her with him. The hugs shared and the tears were amazing and priceless. The following evening when we spent almost three hours in one of Maryah's favorite places with her favorite people...DDs Dance Studio. Maryah sat chatting away with her BFF Kayla and watching her sisters dance while laughing and visiting with everyone.
We went on to get our nails done that week, we spent a full afternoon out at Auntie Jo Jo's house, watching movies and hanging out with Dorian too! We went out and about a lot that week including spending the entire day at a dance competition where she not only got to watch Tori dance but her dear friend Allie.
I remember the sting...like it was yesterday and that pain that would follow and has continued through this very moment. I am choosing to also let the joy of that week before she started her transition as one of the best weeks of our lives together as mother and daughter.

"Dad, Mom's got this...she's tough...where do you think I got it? We're doing great! Don't worry!" - yes, my darling we are tough and we had it...always did and always will. You make it easy.

Love and Blessings,
Mama/Rachel
"Ma Perez"

Friday, March 18, 2011 10:35 AM CDT

Happy belated St. Patrick's Day. Here is an Irish blessing as well as a song that are appropriate for Maryah's caringbridge and the times:

The song is from Riverdance. A little over ten years ago, way before our battles began, when the show was in town, I was given two tickets in the eighth row, center. Rachel generously passed up the chance because she wanted me and Maryah to be able to go together. Rach did Ryah's hair and she wore a beautiful dress. We went to the show full of music and dance. When this song came on, tears would not stop streaming...and I got frustrated because I didn't understand why they would not stop...though I remember thinking I better never lose my girl. The song is titled Caoineadh Cú Chulainn. Caoineadh means “Lament”. Lament means a cry of deep sorrow or grief, or to mourn. Cu Chulainn is an Irish mythological hero who died an early death.

That connection is why the tears…then…and now

http://www.youtube.com/watch?v=6VyytjsiNJQ

- Remembered Joy -
Don't grieve for me, for now I'm free!
I follow the plan God laid for me.
I saw His face, I heard His call,
I took His hand and left it all...
I could not stay another day,
To love, to laugh, to work or play;
Tasks left undone must stay that way.
And if my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss...
Ah yes, these things I, too, shall miss.
My life's been full, I've savoured much:
Good times, good friends, a loved-one's touch.
Perhaps my time seemed all too brief—
Don't shorten yours with undue grief.
Be not burdened with tears of sorrow,
Enjoy the sunshine of the morrow.

As Maryah would say, "Enjoy this day...God bless".
Zach/Ringman (retired)/and STILL Maryah's dad

Thursday, February 24, 2011 10:59 AM CST

One year ago today - right now - Maryah, Mo, Kayla, and I were flying comfortably with Pat and Damon to the waiting arms of Aunt Sheri and Uncle Jim in Arizona for Champ's bucket list trip...to go to the mountains and the ocean.

People ask if holidays or anniversaries are difficult. My response is no, not more than any other day, because every day is hard. Today is different...it is harder because memories of Maryah on this very day are so vivid. Brother being in New Orleans but with us in spirit. Waking up early, going to the clinic for platelets so Ryah's blood counts would be up so she could get the trip with enough energy, loading up the car with luggage, her wheelchair, and walker, seeing the bid smiles on Maryah's, Mo's, and Kayla's faces, meeting Pat for the first time out in front of the airport and knowing this man whom we had never met was giving us a gift that keeps on giving, seeing Maryah get giddy with excitement seeing Sean and his buddies see her off. Boarding the plane was incredible - getting seated, Pat showing us where the food and controls for the Bose stereo system were. After take off we played Sade and Whitney Houston...loudly I must say. Those speakers bump. Watching Maryah settle in physically...then spiritually. Something truly amazing and unique. Knowing Maryah was going to pass and that was our last trip was ever present and yet we were in the moment, cherishing every second.

Later today my dad "Papa", Denise and Hannah joined us and we relaxed in the sun, followed by our favorite meal of crab legs and shrimp, before making our way to the mountaintop...and the excitement of going to ocean eased us into our slumber as we drifted off to sleep that evening. THANK YOU, GOD!

For a recap watch http://www.youtube.com/watch?v=O6V0wxRoLEo

Thank you Brother Michael, Pat, Marilyn, Damon.
Zach/Dad

Saturday, January 22, 2011 5:59 PM CST

On Thursday I woke up and from the moment my eyes opened my heart was SO heavy. I have these days regularly where I cannot walk through my day without reliving all my memories of Maryah's last months, weeks, minutes and it hurts my heart beyond anything I can express in words.
On Thursday afternoon I was participating in a meeting at work. We all eight sat in the dining room of the Nursing Home where I work. Part way through the meeting a man walked through the hall with a Dalmation puppy who struck me at that very moment as the most gorgeous dog. Now, I am a dog person but I do not usually go out of my way for any dog. I gasped, interrupted the meeting and I'm sure made everyone wonder if I was of sane mind. Later, I went to my office and upon coming out to leave for the day the gentleman with the dog was approaching. I stopped, the dog was licking me, wagging her tail and was pretty interested in making sure I knew she was there. I pet her and commented on her "happy butt" and how beautiful she was. The gentleman responded "Thank you, this is Mariah"..."excuse me?" with a shocked look on my face...just taken back by how she comes to me to let me know SHE is happy so I should be happy as well. Maryah made sure to let us know each and every time we had Chinese food that she was the dog under the Chinese zodiac and of course Dalmations are known for saving lives...couldn't have been a better reminder for me to pull it together and understand that she is happy...so must we all be!

This is still one of my very favorite "notes" from God that I keep hanging at my desk for daily reminder:

I asked God to take away my pride. God said "No, it is not for me to take away, but for you to give up."
I asked God to make my ill child whole. God said, "No, her spirit was whole, her body is only temporary."
I asked God to grant me patience. God said, "No, patience is a byproduct of tribulations; it isn't granted, it is earned.".
I asked God to give me happiness. God said, "No, I gave you blessings, happiness is up to you."
I asked God to spare me pain. God said, "No, suffering draws you apart from worldly cares and brings you closer to me."
I asked God to make my spirit grow. God said "No, you must grow on your own, but I will prune you to make you fruitful."
I asked God for all things that I might enjoy life. God said, "No, I will give you life so that you may enjoy all things."
I asked God to help me love others, as much as he loves me. God said, "Ahhh, finally you have the idea!"

Thank you Maryah...for EVERYTHING! We miss you and love you but we KNOW you are happy.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, January 6, 2011 2:30 PM CST

Seven years ago today - January 6th, 2004 - our journey officially began with a diagnosis of Ewing's sarcoma at the U of M Fairview hospital.

Rach and I knew what we were facing seven years ago yesterday when we brought Maryah to Central Peds to get her leg checked out since she had been up the night before crying because the pain was so great. Dr. Jaeger started the ball rolling, after an initial x-ray on the 5th, followed by a CT scan and an MRI.

Dr. Roby Thompson did the "bibopsy" (for those of you who've seen "My Big Fat Greek Wedding" - which we watched frequently while Maryah had chemo). We have so many thoughts, each accompanied by emotions...which branch out into an infinite web of connections. Initially I was going to share a step-by-step playbook of Maryah's journey those first few days...but have decided to share something Maryah taught me this morning instead.

Every morning my first conscious thoughts focus on holding God's hand with my left, Jesus' hand with my right, the Holy Spirit wrapping around my shoulders like a blanket, and hugging Maryah...simply saying, "Good morning Ryah. Love you (with three kisses like we'd always do - and like me, Mo, and Azaria STILL do). Let's ALL BE and work together today". Then I can begin my day. This morning began the same. However, afterwards I felt anger - of course not with Maryah, not with God, not with anyone...just that we don't have Ryah here with us physically. I miss the tangible things. After some time feeling this...Maryah spoke and said this:

"Daddy, I AM here physically". Somewhat annoyed I thought "Yeah right...you're just trying to make me feel better. Thank you Champ but we're tired of having you here in our hearts but not really having you here; tired of always having to rearrange our pain by seeing things differently in our minds when our hearts hurt like they do. It hurts to not be able to hold you. I want you. You know...tangible".

Then Ryah said, "You KNOW how we LOVE music? Think of a really good song and sing it". Too focused on wanting to sulk to actually sing, I let her know I'm still open to the lesson. Maryah then said, "So when you sing a song, you are not the composer, nor are you the original singer. But YOU can still sing along with the song you hear in your head - the song you have on your heart - and that song when sung IS tangible. I'm right here".

Like a familiar song that easily slips over our lips as we remember the words and the beat...when we speak of Maryah it is familiar and tangible as we recall.

Yep...you get it Champ! Thank you honey.

Keep singing...
Zach/Maryah's Dad and (retired) Ringman

Thursday, December 30, 2010 9:58 AM CST

Good Morning,

As I sit here I find myself reflecting on 2010 I am honestly wishing that I could stay where I am instead of launching into this new year.

The new year for me brings a lot of hard firsts again and I think that I would much prefer to stay within the year that we started believing Maryah would live, would thrive would beat cancer. Stay within the year that I last saw Maryah, that I last held her, kissed and hugged her and felt her sweet hand in mine. I would prefer not to celebrate and bring in this new year without her.

However, I do know that the rest of my family is going to move forward into this new year. They will grow, they will learn new things, they will turn 1, 4, 8, 11 and 15 this year and get closer to being "big kids" instead of our babies. I know that along with each difficult moment there will be a positive moment parallel to it.

It is with mixed emotion that I ring in 2011 knowing that no year going forward will ever be the same without my sweet daughter laughing, smiling, singing and dancing through life here on earth.

I pray for peace for 2011 for me, for our family, for the kids, for Maryah and for all of you. That's really all I can do is continue to give it all to God and trust in his grace and mercy.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, December 10, 2010 1:56 PM CST

Today at Cretin-Derham Hall students and staff hosted a blood drive in honor of Maryah. Special thanks to Memorial Blood Center, Patty and Hannah, and all of the other students and staff who helped organize this drive. I was told their goal - which was the largest in the Twin Cities - was 166 units of blood. Usually they like to nudge people to donate by drawing them in with small gifts or treats...but they were proud to inform me that after Brother Michael Lee said Maryah's name at an auditorium gathering earlier this week that they had 180 people sign-up.

As I walked into the gym to donate I was greeted with a genuinely warm reception. You can tell a lot about your children by how others interact with you as their parent. There were no awkward exchanges...people were enthusiastic about giving in honor of Maryah. They had a wheel chair with pictures of the Champ, pictures of butterflies, and a copy of St. Therese's prayer which they read for morning prayer today.

To Maryah's friends who donated while I was there - it was SO good seeing you! Maryah was our connection initially, however, she instilled life-long connections...so don't be strangers. Call us or drop an email. If you don't have it but want it, ask someone. Keep giving. People say to us that Maryah inspired, and continues to inspire, so much...and yes, these are gifts that will keep on giving...so remember this, "to whom much is given, much is expected". We are called to serve..."faith without works is dead". I applaud your energy and desire to do what is right. This isn't meant to be preachy, it's meant to help us continue to connect with each other and others so that we can live fully like Maryah taught us.

BE well, enjoy this day, and God bless...
Zach...(still) Maryah's Dad...and retired ringman

Monday, November 29, 2010 5:01 AM CST

There have been many thoughts reminiscent of Christmas' past this last month or so now. Many know the heart ache of a "first" Christmas without a loved one. I have been thinking and reflecting a lot on many of the friends we have met through Caringbridge or other avenues who lost their children to this beast we call cancer and I remember thinking around this time of year, just how impossible the season must be for them. I would wonder how they could function at all? I remember tears pouring down my cheeks as I would read their messages and pray that I would never be writing about Christmas without Maryah.

Here it is December already this week and I am writing about my Maryah and trying to understand yet again how this could have happened to us...things like this happen to other people. Right? No...it happened to our family. It happened to Maryah.

There were many times when Zach and I would somehow mentally prepare for the day..."just incase" we would talk so that we could prepare if God forbid she were to pass. We always started those conversations with that disclaimer "I know it's hard to think about and God forbid it should ever come to light..." It's how the Bob Marley song came to be played at the funeral...I dreamt it. Yes, I dreamt about Maryah's funeral a LONG time ago...how do you share that with anyone? I never do know how others will take this information and process it...did I want her to go? Is that what they will think? I guess I don't really mind the judgment because only God and her parents could possibly know why these conversations took place, why we thought about it all...God was preparing us, helping us to be able to continue living in her absence, knowing we will never be "ready" but that we couldn't die with her.

One thought I never had was Christmas without Maryah...since the 1st Christmas in 1994 to Christmas 2009 we celebrated together. From the day after Thanksgiving until New Years day! We would plan, decorate, celebrate, shop, hug, dance, laugh and be happy together. This was the case then and it must be the case now.

In every moment she will be with me, with her family...laughing, bringing us extra joy to get through the holiday and enjoying Christmas through us. I will not let her down. Her stocking will be hung, her presents, although different will be there, and we will celebrate WITH Maryah, not WITHOUT.

I hope and pray that all of those who have lost a child, all of those who have had a child battle cancer or still have a child battling cancer...will find ALL the joy of this Christmas in their lives. I hope and pray that the tears will be overcome with laughter and joy.

With much love and many blessings this holiday season,

Rachel/Mama
"Ma Perez"

Thursday, November 11, 2010 1:01 PM CST

Maryah's Lucky Number 7

This group is in memory of Maryah and in effort to raise money for Children's Lighthouse of MN. Children's Lighthouse of MN will be the first Children's Hospice Home in MN. Please read Maryah's story to find out about her amazing strength, compassion, and fight:

http://childrenslighthousemn.org/maryah-champ-therese-emerson-tifts-story

Please read about Children's Lighthouse of MN to find out about the mission:

http://childrenslighthousemn.org/mission

Maryah's favorite number is "7" and we ask that if you are able, to make a donation in her name and have a "7" in the donation amount.

Donations can be made online at:

http://www.childrenslighthousemn.org/civicrm/contribute/transact?reset=1&id=1

or email with questions and for more options at:

maryahs7club@hotmail.com
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Maryah's Necklace:

Margaret Palmer is a dear woman and the mother of a student who attended Cretin-Derham Hall with Maryah. Margaret has designed a line of jewelry including the cancer pearls collection. Amongst the cancer pearl collection there is "Maryah's Necklace" which was designed with Maryah as the inspiration.

Margaret has generously offered to donate a percent of the proceeds for Maryah's necklace to Children's Lighthouse of MN in honor of Maryah.

Our family is working very hard toward raising sufficient funds to open this much needed children's hospice/respite center in MN. We hope that you will find that you would like to donate to the mission as well.

Thank you all for you continued thoughts and prayers and for following our family as we begin to mend our hearts and heal. It is a VERY slow process and we have a very LONG way to go but with Maryah smiling down on us we are motivated to push forward to acheive important goals such as this one.

Love and Blessings,
Mama/Rachel
"Ma Perez"

Thursday, November 4, 2010 4:14 PM CDT

"The Master stays behind;
that is why she is always ahead.
She is detached from all things;
that is why she is one with them.
Because she has let go of herself,
she is perfectly fulfilled."

This is an excerpt from Tao Te Ching by Lao-tzu. The contemporary english translator brought the honor and justification (rightly so) of the historical context of everything male and evolved this piece to female...as it should be. When we read this we can see Maryah clearly...again...in addition to the many other ways we see her.

Enjoy this day and God bless,
Zach and (still) Maryah's Dad

Wednesday, October 6, 2010 4:17 PM CDT

Here is something I jotted down off the cuff a few months before Maryah was going to pass. Maryah was teaching us then, in that moment, what we would need in this moment. Enjoy...

God is love
"God made us out of love
We are called to love God and others
As we love God and love others…grace is what comes back to us…

Allow ourselves to “be” with God...
...and we can do so by simply loving others…and God’s grace does return.

When we’re struggling and we’re not experiencing God’s grace, perhaps we can remember we have more listening, more holding, more “snugguming” as Maryah used to call it when she was little, more laughing, more praying, more suffering, more letting go, more crying, more saying what we need to say, more appreciating, more loving..."

There is ALWAYS more...

Zach...and STILL Maryah's Dad

Also, check out the new picture under "view photos". Its huge, I still haven't figured out how to size it, but you'll see the two Therese's
__________________________________

Picture is re-sized now...too beautiful not to see it!

We encourage you to visit this link to Maryah's Necklace created and introduced by Margaret Palmer. Margaret is the mother of one of Maryah's CDH classmates. It is truly a beautiful tribute. A donation will be made to Children's Lighthouse of MN for each necklace purchase.

www.margaretpalmerjewelry.com

Love,
Mama/Rachel
"Ma Perez"

Saturday, September 25, 2010 1:42 PM CDT

Good Afternoon,

We have officially entered fall and along with the new season comes the new school year, the new dance season, the new volleyball season and a lot of things that keep us busy on many days.

Each day that goes by brings deeper heartache that I never knew was possible. The loss seems to be getting harder to bare and my thoughts are with Maryah far more every moment that passes.

I knew that this would be the most terrible pain, the most terrible event, the most terrible heart wrenching loss in my life. There is simply no way to prepare for it and in the end it is far worse than anything my mind could have tried to grasp.

There are so many memories from the moment Maryah was born to the moment she died that flood my mind day in and day out. I have a small idea today of the amount of people she touched and all those that felt close ties to her because of how she treated everyone around her and everyone that was blessed to part of her life, including me. I am never far from amazed and humbled by this realization.

We are working with the Founder and the Board of Directors for Children's Lighthouse of MN (a future children's hospice and respite center). We are volunteering and recruiting volunteers and donations to open this center and keep it running for many years to come. Where there has never been a children's hospice/respite center in MN there will be soon and it will be a beacon of light and hope for many families who have been in similar situations as our family has with Maryah. We are supporting this effort to honor Maryah and her amazing life and death. She has taught us so much and I only hope that her memory will bring thousands together to help this home to open.

Tomorrow, Sunday, September 26th at Como Lake Pavillion/Black Bear Crossing Children's Lighthouse of MN is hosting a Children's Music Festival. All proceeds from the event will be used for Children's Lighthouse of MN. I hope you will join us in honoring Maryah.

I pray each day for all of you that have followed and supported, I pray for each of my children that they feel Maryah surrounding them every day, I pray for us, her parents that we may some day simply feel peace and joy rather constant grief and sorrow, pain and heartache.

Thank you for your continued visits to this site. Thank for your continued prayers, love and support.

Maryah Therese Emerson-Tift I LOVE YOU and I MISS YOU and I wish I had a million more opportunities to tell you that and to hug you tight. Rest well my sweet baby.

Rachel/Mama
"Ma Perez"

Wednesday, September 1, 2010 1:52 PM CDT

Hello family...

From time to time people ask us questions about Maryah...hesitantly...and so from time to time we'll share. Here are a few updates because in talking about Maryah we continue the same interconnectedness with each other that she shares with us.

The first is a personal story I shared with a friend who asked me if Maryah has visited me. I couldn't answer her question in person because all that came out were tears...so I said I could write it. Here is what was shared:

You asked me if Maryah visits me…and at the time couldn't talk…though I said I could write. She visits is differing forms. Here are a few examples. This Saturday morning as Twila and I sat with some morning coffee I looked down and on our wooden table water from Twila's cup was in the shape of an M. Water...in the shape of an "M". I took a picture of it!

Maryah told us many times that whenever we see a butterfly "flutterby" that it's her coming to check on us and see how we're doing. Sometimes I can hear her voice, especially her squeals of excitement and joy…which she did frequently.

As of yet, the time she came and visited me in person was when I escorted her physical body from the funeral home to the place where she was to be cremated…which just happened to be at the cemetery where most of her remains were going to be planted…even though the funeral home and cemetery were many miles away from each other. I followed the van and as we drove from place to place I prayed and listened to music…like we had done many, many times together...doing my best to remember this simple yet profound moment; to LIVE this one last and final drive. We enetered the cemetary and pulled around to the back of the building. I got out of our car and went to the van. I helped move her body from the van to the table that was on wheels; the table that was to bring her to cremation.

It is important to note that I was shown a vision some time ago I would do this…that I would hand her off in the last and final physical act of Maryah's transition. I was shown that I'd be the one in the family to do this and so the preparation for that moment had been happening for some time. Earlier that day Twila, Rachel, and Dan had all planned on being there though, through situations arising, none were able to join…and so the vision that had been shared came to fruition. Forwarding through some details of this story…I sat and watched from outside of the building what I thought was Maryah's remains being cremated…seemingly alone. Yet talking to her, not knowing what to do with that moment, I said, "Maryah, I don't know how I'm supposed to feel about this…watching you being cremated" with vivid images of memories of years of holding, hugging, cuddling (snugguming as she called it when she was young, and we've called it that ever since), kisses, all the hand holding since she learned how to walk…and the enormity and finality of something wonderful transitioning before my eyes…like a cocoon transitioning into a butterfly…free…and truly LIBERATED. I told her, "Champ, I need your help on this". Just she came and appeared to me...she sat right next to me in our car – Chief X -…still bold (yes BOLD) and beautiful with twinkling eyes and her radiant smile. In our shockingly warped sense of humor that can only be learned on the battle fields she looked at me, smiling BIIIG, and said in her joking and chiding yet confident voice, "burn baby burn!"…I was shocked at the directness of her chosen words…and yet her look and tone and posture with her smile and laugh made me laugh…. Then she said, "Daddy, my body is only PART of me…but THIS IS ME"..."That burning right now is the cancer...and what is left are my remains...I will remain". And with that she went. Through the tears I looked down and in my hands I found myself holding a box of "HOT" tamales. Though I don't recall picking them up…the sarcastic irony didn't escape the moment and she departed that time with one more funny joke on dad.

Love that GIRL!

Here is also an update about the CLM:
Katie from CLM (http://www.childrenslighthousemn.org) and I just had lunch with, and gave a presentation to, the Exchange Club of East Minneapolis (aka NE Minneapolis). Katie gave a wonderful overview of CLM and I shared some of our family's experiences as we built a case for the need for a children's respite and hospice home in Minnesota. Katie has done her work and so there wasn't a question that she could not answer. It is our hope to continue spreading the word about the need for a sacred place where children and families can go to LIVE FULLY.

Enjoy this day..."Pray hard, walk tall, do right"
...still Maryah's Dad...Zach
_______________________________________

This week was the first week back to school for CDH. Maryah’s classmates are back walking the halls of one of her very favorite places. I have great faith that Maryah will “present” herself to each of them in her own very special way. She will let them know she is close by and watching over them. She is not only watching over them she is enjoying being back to school as a Junior this year.

I will still not forget the day that we found out Maryah would be going to CDH. It was a day to remember forever…”I’M GOING TO CRETIN!!!!!!!?!?!?!?!?!!!!!!” she screamed. She was more than a little excited about the opportunity. Little did we know at that point just what an important role the CDH community would play in all of our lives. Maryah had it correct when she said that CDH was the best school she could have gone to. We were correct in thinking it would be the environment where she would receive nurturing and compassion as she fought through MANY battles. True to the CDH team spirit…we fought as together as TEAM MARYAH!

Today, I remember that I still have a beautiful daughter who is a JUNIOR at CDH!!!! Yes, Maryah…I DO know you go to CDH! The Tift/Perez clan wishes you all a wonderful, fun, exciting and safe year at school.

Rachel "Ma" Perez

Sunday, August 15, 2010 8:16 PM CDT

Although today, August 15th marks another month since Maryah has been gone it isn't much different then any other day that is filled with thoughts of her and how much we each miss her.

When asked "how are you?" I can easily answer "fine". When asked "how are you doing?" it's easy to respond "I'm doing fine". I do just fine...I feel garbage on the inside however.

I have realized over these months that you can put on your "game face" day after day and do your job, take care of your children, go to the grocery store, greet neighbors and friends with a smile all while feeling like your heart is being squeezed so hard it physically hurts.

I have realized that there are many people (unfortunately) who do know what it feels like to lose your child. Some people out there can relate and somehow it helps me so I don't feel so alone some moments.

Mostly it just feels sad and lonely. Mostly it just feels like there is a hole that will forever be in my heart just the size of my baby girl.

I have realized that I think Morgan is good at this too, putting on her "game face" and doing what is necessary to move forward rather than standing still and crying all of the time. She is such a good girl and I am so proud of her, I wish she never had to know what it feels like to lose a sister, a best friend. The second greatest heartache I've known as a Mom is knowing Mo has a broken heart that I cannot heal. Not being able to heal cancer and protect my child from it and now not being able to mend a broken heart...it's a very helpless feeling.

I wish I could give a happier update today but honestly I'm just lonely for Maryah and I can't fake it today.

So many out there who have and continue to support and I am so grateful. Thank you for checking in simply because it's part of your daily routine or because you are looking for an update or just because it's a habit...thank you.

Love and Blessings,
Rachel/Maryah
"Ma Perez"

Saturday, August 7, 2010 7:11 AM CDT

Good Morning!

I am so grateful for Zach's words. His love for our girl resonates and it fills the page and beyond. My words sometimes just dump out on the page in a random slur of thoughts and emotions so I am glad one of us is making sense!

It is a quiet Saturday morning and I am relishing in the quiet and a good cup of coffee as my family sleeps soundly this morning (late I might add at 7:15 a.m).

It is in these moments that I feel Maryah around me the most. Our quiet times with so many unspoken feelings around all that would be happening in our lives both good and bad. As I reflected on some pictures of her last week at home I saw that smile that she wore on her face and remembered that no matter what she faced on any given day she ALWAYS did it with a smile. Of course there was an occasional grimace when told to stop texting at the dinner table or that she had to pick up her room. On most days before this past January Maryah was a very "normal" teenage girl with chores and friends and shopping and many, many things that made her both happy and irritated. We argued like mothers and daughters do at times and we cried and hugged and loved each like crazy too. It is in these times that it is so quiet in the house that I remember the "normal"/non-cancer filled moments so vividly. I half expect her to come dragging down the steps, hair a mess, groggy eyed asking "what's for breakfast?" or asking me to get her a cup of coffee while she found her comfy spot in the big chair in the living room to wake up and get going.

I am happy when I think of these times and how much she smiled and cherished life even on the "normal" days when she didn't have the cancer thrown in her face at the moment. She didn't need that reminder not to take life for granted... she just never did!

Someone recently said to me "...losing your child is a mother's worst fear..." Yes, I suppose it is but we never feared anything, we didn't fear that Maryah would die. Without even knowing it we were all living Corinthians 13:13 Faith, Hope and Love. Our faith was unshakable, our hope never ended not even after Maryah took her last breath and our LOVE is stronger than ever. Our love for her, for our families, for our friends for life. I am forever grateful that Maryah taught me to live in this manner.

Maryah's one request of each of us was that we take care of the others. She managed to cover everyone by asking for one or the other of us to take care of someone else. We are all taking care of each other. We are honoring her requests and doing it how she would want us to...with a smile on our face (most days).

Thank you for continuing to check in and support our family. The road has not come to an end just another beginning.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, July 26, 2010 1:49 PM CDT

Many of us STILL struggle...

As life moves on, it seems some may be waiting for a supernatural event, or a mind shift where our brains will suddenly switch off the grief, or a destination, or an epiphany that will help lessen the pain of Maryah not being here with us physically.

Maryah and I talked about it many times, that there will be a moment each of us will experience when it is our time to go "home", and the heavens will open to us...and for the “Precious Lord [to] take my hand”...and EVERYTHING will make sense, maybe not to others...but to us we'll see clearly.

In that moment we will be able to see all the reasons for, and the necessity of, the pain and joy we and others are experiencing now. I believe this wholeheartedly...Maryah believed this...and regardless of our differing spiritual, religious, and other beliefs...we can all gain some comfort in knowing one day, when this moment happens to each of us, this – and other hardships - can all make complete sense.

Some of us may experience this clarity before our final days...a BIG piece of me knows Maryah had things figured out a long time ago.

Look at her pictures, see how she shared love, hear her squeals of excitement, her laughter and her voice, remember any memory, recall any story you heard of her...and we find solid, tangible proof that things made sense to her...because she saw things as they truly are. And we see things with more clarity because she shares in LIFE with us...STILL...

When you want a little pick-me-up and to feel Maryah, go for a walk around a lake, or just sit by water, and feel the wind. "Always be watchful of the little things around you" as her Nuna told her. Her favorite time of day is the last hour and a half or so before the sun sets...so enjoy this time always. And whenever you see a sunset, just know "that is what God painted for you"...then say “thank you God”…Maryah always did.

...still...
Maryah's Dad

*(Precious Lord take my hand is a song Maryah loves, which Minister Tranese sung at her celebration of life at the Cathedral - see http://www.youtube.com/watch?v=bJwUpW7ioiA
for Kelly Price's rendition - Maryah listened to it over and over and over during her final days of physical life)

Thursday, July 15, 2010 6:42 AM CDT

Good Morning,

After two months some days it feels like an eternity has passed since Maryah went Home and other days it feels like it was seconds ago. The hurt that we carry is no different than it was the moment she left.

I have been thinking a lot about change and how things have changed or not changed in these past two months. Soon Morgan will be changing schools. After a long process of gathering information Morgan made a very solid decision to make this huge change in her life and we are all supporting her in that decision. I think it may be harder on the adults who worry about her than it is on her. She's very confident...she very much reminds me of Maryah in this way.

With this change there will come others and each one will be difficult in their own way. Most times in my life I have welcomed and honored change...recently I feel it's a burden and it scares me and I wish things would stand still for a bit. Unfortunately when you have such a tragedy, the world just keeps turning and you have to find a way to move with it.

I think quite a bit about Nuna and how much her life has changed. I think about how life changed when she committed many years ago to taking care of Maryah so Zach and I could keep our jobs and what that change brought for her and her family. I think about how it is for her now and how life must somehow change again for her since her time is now "available" and she must find a way to move with it. I think often about this because my "available" times are the hardest times for me.

HUGE changes have taken place already and there have been huge paradigm shifts for many of us. Living our new life with Maryah is so incredibly different and this is a change that has changed us.

This next change for Morgan will be good and it will be the first BIG change we've had since Maryah's passing. I am glad that Morgan can be the one to experience this and I hope and pray that she will continue welcoming the newness of possibilities.

In the near future we will begin sharing specific details of a new and much needed venture in which our family and some of friends are assisting. We were contacted, and have met with, two visionary and dedicated women who are working diligently to create and maintain a Children's Hospice center in MN. Just to put it into perspective, there are NO hospice homes for specifically for children in Minnesota. In fact, there are two that we know of in the entire nation. Two! Not coincidentally, the two are in Arizona and California...the states where we traveled that were on Maryah's bucket list. More so, the UK - which we were told is about the size of Maine - has 40 hospice homes for children that are each funded by their local communities! We were completely blown away when, with a few months of Maryah's life left, we learned there aren't hospice homes for children where children and families can go to "BE" during this sacred time...but with the support of you, us, and many, many more...there WILL be!

The center will be Children's Lighthouse MN. They already have quite a bit in place and we are just jumping in to start helping with the footwork to get this wonderful and much needed place open. Our family is wrapping our arms around this project and knows that Maryah is leading and inspiring us as we participate. We will help bring this vision into fruition because of who she is and how she continues to move with us.

THIS is a much needed change that we can all feel good about. They will be launching their website soon so keep your eyes and ears peeled. www.childrenslighthousemn.org

We will look forward to sharing more information as developments progress. Thanks to all of those in our support network who are ready and willing to get on board.

With much love and many blessings...
In Faith, Hope and LOVE,
Rachel/Mama
"Ma Perez"

Wednesday, July 7, 2010 12:19 AM CDT

Maryah's favorite number is 7...probably because she was born on the 7th of May. In an attempt to find meaning, we often look to symbolism and numbers as a means to interconnectedness and meaning.

So we'll share something that was special to Maryah. She found wonderment in wanting to get married 7 years from today...on 7/7/2017. As my spiritual brother Adam says..."I'm sure there's something spiritual there...not sure what it is...but there's something". Maryah had her reasons and this date appealed to her heart.

We'll see what today brings...and we'll see what 7/7 brings 7 years from now. Something wonderful is bound to happen.

We love and miss you like crazy, Champ!
Dad
_______________________________________

I have to add to this of course because throughout the years we have looked at these numbers for symbolism. For Maryah it is 7. My mother, Mary was born on Feb. 7th. Maryah was born on the 7th day in the month of Mary (May). The one and only picture I have of my mother and I together was taken on May 7th when I was in the 7th grade. After Maryah was born her Grandfather, Neil gave me a picture of the Virgin Mary holding baby Jesus. It was an old version and he gave it because the child looked like Maryah, I was astounded by the similarity to Mary and my mother Mary (when she was a young woman). At some point I looked in an old prayer book that belonged to my mother. She kept cards (the kind you get at a funeral with pictures of Jesus, Mary or a Saint on them and info on the back for the person who died). This was her history, her family records in this book. I opened to May 7th and there was a card with the exact same picture that I speak of.
Zach was drawn to the numbers 8 and 5 and our family to the number 3. Maryah died at age 16, 8 days and 35 minutes from the time she was born.
This is just a small portion of the symbolism we have encountered over the years and I wanted to share. When Adam says there is something spiritual there...I agree. There is, it is far bigger than all of us and gives me great faith in God's grand plan. Thanks for letting us share. Cannot wait for 7/7/2017.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Wednesday, June 30, 2010 6:21 PM CDT

Just the other day I was crying, no, sobbing because I could not find a book that Zach and I used to read to Maryah over and over and over again until she finally memorized each page, each careful word of the entire book at age three.
I was so sad knowing that even though I could simply find a new copy of the book I could not hold and read Maryah's copy, the worn, used and loved book. This was three days ago...I found it just now and I am again crying for joy...thank you Maryah!

The Turtle and the Moon by Charles Turner

(Inscription on inside cover: To: Maryah on HER BIG 3 BIRTHDAY- Always be watchful of the little things around you- I love you, Nuna; There is an illustration of a butterfly where Nuna signed her name).

The turtle lived alone in the tall grass beside the lake.
Every day he went for a walk and then he took a nap, and then he dived into the water and went for a swim.
Then he took a sunbath and went for another swim.
Sometimes the turtle got lonely because there was nobody to play with.
At the end of the day, even before the sun went down, the turtle would draw himself into his shell and go to sleep.
But one restless night he woke up and poked his head out and saw something (this is Maryah's favorite part and she would repeat it to my belly later on when I was pregnant with Morgan) SO BIG and SO ROUND and SO STRANGE that he snapped at it.
The moon- for that was what it was- slid behind a cloud. "I'm sorry I frightened you," the turtle said. "Come out and I promise not to snap at you again."
But the moon did not come out.
"Come out and let's go for a swim," the turtle said.
But the moon did not come out.
"I bet you CAN'T swim," the turtle scoffed (Maryah loved the word scoffed).
And the moon peeped out.
"I'll race you," the turtle challenged,
and he turned and lumbered toward the lake.
But when he poked his nose thorugh the all grass, the turtle was surprised. The moon was already in the water, waiting for him.
The turtle threw himself into the shining lake -plop!-
and suddenly the moon was splashing around,
playing hide-and-seek and tag,
diving down here, bobbing up there,
shimmering in every direction.
"Show-off," the turtle said,
and he began to show off too,
swimming in circles,
ducking his head,
kicking up his heals.
When the sun edged the horizon, the turtle and the moon were very tired and very sleepy. The turtle drew himself into his shell and slept.
The fading moon drifted to the other side of the lake,
to the other side of the world...
Not a trace of it was left when the turtle woke up.
The turtle went for a walk as usual, (Maryah pronounced this as OOO SUALL)
and then took a nap as usual,
and then he dived into the water and went for a swim and took a sunbath and went for another swim, as usual.
But that evening the turtle did not got to bed before dark as usual.
That evening, he waited for the sun to go down, for night to fall, and for his friend to come out and play.

The End

I can picture her light, brown bouncy curls and sparkling blue eyes (they were much more blue as a toddler) while we would sit and read this again and again first one of us would read to her and then eventually she began reading it to us each time. I miss this time.

I love you Maryah and thank you for helping me find the book! I am SO happy!

Love and Blessings,
Rachel/Mama
Ma Perez

Monday, June 21, 2010 10:39 AM CDT

Rachel and I have been exchanging thoughts about Maryah...and something an old friend and mentor, Sam Grant (who taught me the art of loving to learn), shared with his students is the principle of "ubuntu"...and I want to share it with you because Maryah understood and possesses this quality.

Ubuntu

"In an African context it suggests that the person one is to become by behaving with humanity is an ancestor worthy of respect or veneration.

Those who uphold the principle of ubuntu throughout their lives will, in death, achieve a unity with those still living."

Maryah's Dad & Ringman (retired)
_____________________________________

Good Morning,

I have had so much time to think about my memories that include Maryah and honestly it still isn't enough. There are so many from the time she was born until May 15, 2010 and even more after that... it's amazing when I stop to really think about it all. It just blows me away.

I am writing today because for the first time since Maryah's passing I genuinely felt happy this morning. There are many people who know Maryah and have been touched by her. I have had the opportunity to talk about her a lot to many people we know. However this morning, upon dropping Libby off at VBS for her first day I ran into a woman that works there who I have only spoken to on the phone and it was so nice to put a face with a name and chat for a few minutes. You know... that friendly chat about the summer, the weather, the kids and their activities, etc, etc. However today the conversation led to children and how many kids do I have? My answer has been and will always be SIX, I have SIX kids, four that I birthed and two that I did not but none the same I have SIX. Today for some reason I mentioned that our oldest daughter had passed about a month ago after a long battle with cancer. This is something I hate saying, I don't say to anyone hardly ever and I really much prefer to just tell anyone who asks that I have SIX! Today though...there was a reason. The woman I was talking to quickly said with excitement in her voice "Are you Maryah's Mom?" and my response was just as excited "YES, I am!" It feels so good to me to be able to talk about Maryah and her journey and to hear how she has touched people. She continues to bring us together in Faith, Hope and LOVE...

I cannot begin to explain how much I miss her, I miss everything about her and especially the ability to just hold and cuddle her. The pain seems to get more intense with time rather than getting better and I am sure that no amount of time will ever make this better. I mentioned to Zach that this pain has become my roomate and it will always be here alongside every other emotion I feel. It will never move out but eventually I may just become more used to it's presence.

I hope for more of these opportunities to meet folks that know Maryah and to talk about her and how amazing she is to so many. I am thankful for that moment of happiness today!

I hope that this message finds all of you well and that today you can think of your own memories of Maryah and how she may have touched your life. I hope these thoughts make you smile!

As Zach mentions above we love the philosophy of Ubuntu. Here is a description given by the South African Nobel Laureate Archbishop Desmond Tutu:

It is the essence of being human. It speaks of the fact that my humanity is caught up and is inextricably bound up in yours. I am human because I belong. It speaks about wholeness, it speaks about compassion. A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share. Such people are open and available to others, willing to be vulnerable, affirming of others, do not feel threatened that others are able and good, for they have a proper self-assurance that comes from knowing that they belong in a greater whole. They know that they are diminished when others are humiliated, diminished when others are oppressed, diminished when others are treated as if they were less than who they are. The quality of Ubuntu gives people resilience, enabling them to survive and emerge still human despite all efforts to dehumanize them."

In Faith, Hope and Love,

Rachel/Mama
Ma Perez

Tuesday, June 15, 2010 12:51 AM CDT

One month ago today...still can't believe it.
Love you Champ!

Here is a prayer by St. Therese that was comforting to Maryah and this prayer continues to be comforting to us. Remember, St. Therese was a young woman who endured physical suffering, loved simply yet profoundly, and passed away at a young age. Faith, hope, LOVE...

May today there be peace within.
May you trust that you are exactly
where you are meant to be.
May you not forget the infinite possibilities that are
born of faith in yourself and others.
May you use the gifts that you have received,
and pass on the love that has been given to you.
May you be content with yourself
just the way you are.
Let this knowledge settle into your bones,
and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.
_______________________________________
Ecclesiastes 3:1-8

“To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love...” (had to end it on LOVE).

As we go through the motions of Maryah not physically being here, let us embrace the uniqueness of each of our own moment-to-moment thoughts that whisper, sing, and scream our inner prayers, hopes, and intentions.

Let us find comfort and reassurance that, despite none of us knowing what another is feeling exactly in that moment, our emotions DO intersect frequently. Somewhere in knowing we’ll meet at the crossroads is comforting.

TIMING is key. So to those of us who've been hurting deeply without knowing how or when this pain will lift because the hurt is SO great, read the scripture above again and again. As we allow ourselves “time” to accept there is a "time" for what we’re experiencing...perhaps we'll be able to move more easily throughout the days and nights knowing others are going through it too, just at another pace.

The intention here is not to take any of the pain away – none of us can do that no matter how hard we may try - the hope is that we can replace the pain with something greater. We'll see each other at the crossroads...

Now is "a time to..."? - (you fill in the blank!)

Faith, hope, love…
Zach/Maryah’s Dad & Ringman (retired)

Friday, June 11, 2010 11:19 AM CDT

Here is a prayer by St. Therese that was comforting to Maryah and this prayer continues to be comforting to us. Remember, St. Therese was a young woman who endured physical suffering, loved simply yet profoundly, and passed away at a young age. Faith, hope, LOVE...

May today there be peace within.
May you trust that you are exactly
where you are meant to be.
May you not forget the infinite possibilities that are
born of faith in yourself and others.
May you use the gifts that you have received,
and pass on the love that has been given to you.
May you be content with yourself
just the way you are.
Let this knowledge settle into your bones,
and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.

_______________________________________
Ecclesiastes 3:1-8

“To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love...” (had to end it on LOVE).

As we go through the motions of Maryah not physically being here, let us embrace the uniqueness of each of our own moment-to-moment thoughts that whisper, sing, and scream our inner prayers, hopes, and intentions.

Let us find comfort and reassurance that, despite none of us knowing what another is feeling exactly in that moment, our emotions DO intersect frequently. Somewhere in knowing we’ll meet at the crossroads is comforting.

TIMING is key. So to those of us who've been hurting deeply without knowing how or when this pain will lift because the hurt is SO great, read the scripture above again and again. As we allow ourselves “time” to accept there is a "time" for what we’re experiencing...perhaps we'll be able to move more easily throughout the days and nights knowing others are going through it too, just at another pace.

The intention here is not to take any of the pain away – none of us can do that no matter how hard we may try - the hope is that we can replace the pain with something greater. We'll see each other at the crossroads...

Now is "a time to..."? - (you fill in the blank!)

Faith, hope, love…
Zach/Maryah’s Dad & Ringman (retired)

Tuesday, June 1, 2010 9:36 AM CDT

Good Morning. This Memorial weekend was particularly difficult for all of us. It seems strange to come and type here this morning. It seems strange to be here without typing words of hope, encourgagement, faith and belief. I know what all "cancer cannot do" but let me tell you that it has made me feel very defeated and lost none-the-less. I come from a long line of STRONG, smart and loving women...as did Maryah but you would never know this about me right now. This mother who could once juggle 77 things per day cannot even muster enough energy and enthusiasm to complete one chore that needs to be done.
I did however, manage with my loving husband's help to get our children's bedrooms rearranged so that Morgan would have a space to sleep that wouldn't make her so sad. Morgan and Maryah shared a room their entire lives together. Morgan has been unable to sleep in their room for the past couple of weeks. We now have made some changes which brought a storm of emotions and tears for me, for Dan, even for the dog who we found sleeping on the suitcase where Maryah's clothes had most recently been. Anyway...I have not much to say so I thought I would let Maryah's words be what comes to the page today. I found this written in one of Maryah's folders next to her bed while cleaning:

I believe in God.
I believe in Love.
I believe miracles can happen.
I am a dancer.
I am a daughter.
I am a sister.
I am a friend.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, May 15, 2010 11:22 AM CDT

We would like to let everyone know that if you are attending the funeral and would like to wear your Team Maryah t-shirts...GO FOR IT!!! It is more than appropriate and she would be honored. There is no need to be dressed up, hot and uncomfortable, Maryah would of course want you to be "fashionable" but comfortable...that was always the goal! Her only request is that everyone wouldn't be all dressed in black! :)

Mama
____________________________________
Funeral is on Thursday, May 20th at 10:30am at the Cathedral of Saint Paul (239 Selby Avenue Saint Paul, MN 55102). Prior to the funeral we will pray the Rosary starting at 10:00am for all who want to join. For those who are not familiar with the Rosary, you are welcome to still join us for quiet prayer as we continue turning to God together.

In the weeks prior to her passing, Maryah would often pray the Rosary at night, or she'd awake and either pray in her bed, or, if she felt well enough, she'd ask me for help into her wheelchair and bring her to the chapel that is there at Our Lady of Good Counsel, to sit queitly and pray...which we did...and so we ask for your presence during this prayer time that Maryah loved/loves so much.

Immediately after the funeral, there will be a procession to the cemetary, followed by a gathering at her high school - Cretin Derham Hall. All are invited.

Faith, hope, & love...
Dad
_______________________________________

It is a with a heavy heart that we announce to you - Maryah is home. Maryah "The Champ" Therese Emerson-Tift's last and final round was this morning...with the good fight officially coming to an end at 10:40am. She had been in retirement for the last few months, but yesterday, as she had trouble breathing, she told us between breaths, "I...am...not...done...fighting...yet". So she hung on and spent the rest of yesterday, all of last night, and precious hours this morning with her immediate family.

She was comfortable and, near the end, wanted to go. We prayed a prayer of release, and, while holding hands, asked God to open the heavens to her. Always being the big sister, she waited until her favorite person in the entire world, little "Sissy" morgan, left the room.

As I write this entry we're sitting bedside and Maryah looks peaceful. We've been holding her, kissing her, and now we know she is in a better place...one without pain and full of love, grace, peace, comfort, and joy.

Here is a writing from Henry Van Dyke that, over the past few weeks, has crossed our path comfortingly...and we'll share it with you.

Gone from My Sight -

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

The someone at my side says: 'There, she is gone!"

"Gone where?"

"Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me, not in her. And just at that moment when someone at my side says: "There, she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"

And that is dying.

She made it to her sweet 16th birthday and did everything on her bucket list she wanted to do. Now she's free to dance and run...and she's with family.

Funeral arrangements will be forthcoming. Remember how she lived and know that even in death, she lives in faith, hope, and love...and the greatest among these is LOVE...

Zach/Maryah's Dad & Ringman (retired) and Rachel/Mama "Ma Perez"

Thursday, May 13, 2010 7:24 PM CDT

Hello family,

Maryah has begun the transition...she's winding down. She's sleeping most of the time, her breathing is slowing, and she's not talking much. Be assured, she's comfortable.
We've been cuddling with her and holding her. Only God knows when...and whenever it is time just know she is ready and at peace.

We're all in this together. Though some may feel a sense of distance during this hard time, inherent within this experience are beauties of stillness and serenity...so our challenge is to search for and find our own, unique joy, calm, and quiet. We don't have to "do" anything - just sit still and "be". It is in this space, place, and time, we'll "be" together.

We'll update soon.

We pray a piece of our family prayer...that we all continue to seek, feel, and share God's love, grace, peace, comfort, and joy.

With love,
Zach/Maryah's Dad & Ringman (retired)

Tuesday, May 11, 2010 1:04 PM CDT

Good Afternoon,

I absolutely dislike entering a journal after Maryah has put one up in her own words. I would much rather she keep doing the journal entries EVERY time.

In the mean time I see how many hits there are on this site each day and know that many of you are out there waiting for an update and are thinking about Maryah and wondering how she is doing.

Maryah did in fact have a lovely sweet 16 birthday celebration Friday. Maryah and Morgan spent the morning shopping online in bed while I did their nails. They picked out many, many things they wanted from many, many stores...then I went as their "personal shopper" and picked it all up. This was quite a task for a woman who hates to shop! I managed to get everything on their list however and returned with bags lined on both of my arms for them to go through and enjoy! Morgan was kind enough to help me and was thrilled to get her ears pierced along the way! Even though we couldn't make it to the Mall of America they still shopped their hearts out! I think there was smoke coming from the laptop!

Saturday brought baby Danny's baptism at the hospice center. Maryah was able to be up and present for the ceremony and lunch afterward. That was so nice and we had a really good visit with our family.

Sunday was of course, Mother's Day. I enjoyed the day with Maryah and Morgan and we spent a quiet day watching movies and soaking up the beautiful sunshine and fresh, cool breeze. I couldn't have asked for a better day!!!!

As we come into this week Maryah has been resting quite a bit. She finds it much more calming to be sleeping and so that is what she is doing and we are helping her to rest comfortable with the help of some meds.

Her pain is very much under control and she is completely comfortable. We will continue to update you as much as we can and when/if something changes.

Thank you for following our journey. Maryah is happy, she is peaceful and she is completely relying on God to guide her (all of us) through this time.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, May 3, 2010 11:09 PM CDT

Hey Everyone!

I am sorry it's been so long since I myself have done a Journal but I am sure you can all see as to why;
Like my mama said in her last update I am currently living in a wonderful hospice center Although It is hard for me to make that move...that really big move, I am enjoying my stay here completely, I wake up every morning to a lovely nurse for my morning meds and then make my way to the chapel for for some good prayer and the rosary that one of the most amazing nurses, I have to say she is my favorite made for me. It is a very special and personal rosary made with an M for Maryah, The Blessed Mother Mary, and my Grandma Mary who passed when my mom was just 16 and meant a great deal to our family.
Now moving to a bit of a happier subject, my birthday is on Friday, just less than 4 days! I am so excited. I plan on spending Friday with my mom, dad, and gorgeous strong beautiful sister morgan at the mall of america doing one of my favorite things! SHOP! hahaha.
Speaking of Morgan I would like to give her a little shout out; She has been so brave, strong, and most of all helpful to me and what I am going through. I love her with all of my heart and truly could not live without her; She is one tough girl and I ask that you keep her in your prayers as well.
I have have had a long and busy weekend and have very tired so I am going to rap this up but I want to thank you all for your love and continued support throughout this long and hard process.
I wish you all a wonderful week and I will update again as soon as I am up for it;
All my love and God Bless,
Maryah/The Champ

Saturday, May 1, 2010 9:39 AM CDT

Good Morning,

Another update to let you know what's new with Maryah this past week.
On Tuesday morning after a long drive around town with Dad, Maryah moved to a wonderful hospice center in St. Paul.

After a bit of paperwork and getting to know the nice people who are working here Maryah wanted to make a trip to Target for a little retail therapy. This has always been her favorite past time! She got a few things to spruce up her room and I think we have managed to decorate up to her standards now!

Maryah and Zach also got out for a bit on Thursday for a walk around the lake and to get nails done! Another of Maryah's favorite things to do...she really is NOTHING like her Mom! :)

The nurses and others who work here are truly angels and they take such good care of all not just Maryah but Zach and me too. It is pretty hard however to relinquish our role as the caregivers and let others do most of Maryah's care. We still jump to do whatever she needs and they keep telling us to sit and let them do it. Well...I don't think that instinct will ever change.

Maryah celebrated her "sweet 16" last night with her friends thanks to some great ladies whom I am blessed to call friends, Megs, Lisa, Brooke and Ali and had a great time getting all gorgeous (not hard at all since she is already gorgeous)! We had a great time prepping for the party and now today she is resting, resting, resting. It was a big day and it wore her right out!

I imagine that she will nap lots today! Although Zach usually spends nights while I spend days and Nuna fills in some afternoons, Dan and I get the great opportunity of sharing this weekend both days and nights with Maryah. We are having quite a bit of fun! There are movies, late night laughs and "shopping" online this time but shopping none-the-less! In just six short days Miss Maryah will actually turn 16 and I couldn't be more thrilled. She is such a genuine young lady with so many remarkable qualities! How do parents get so lucky?!?!?! God is good!

We will continue to keep you updated but for today, Maryah is pain free, happy as a clam and has been smiling all morning. We are enjoying our time as a family and thank you for your support.

Enjoy your weekend, the sunshine this morning, your family and loved ones and remember to smile...it's amazing what a smile can do!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, April 26, 2010 12:42 AM CDT

--------------------------------------------------------------------------------
Monday, April 26, 2010 12:30 AM CDT
Good Afternoon,

As of today it has been decided that Maryah will move to a hospice center in St. Paul. She is happy with the decision and very much took part in making it. She feels she will be comfortable in this place.

Maryah's sister, Morgan and I toured the home last week and we both felt it was very peaceful and serene. Morgan particularly liked the flowers, gardens and nice people. I was struck by how much this place reminds me of my mother, Mary. She would have loved it and in fact it is very similar to a place where she used to retreat with her dear friends annually. It makes the decision seem that much more like the "right decision". Sometimes God places signs in front of us so we know we are on His path...for me He has done that with this place.

We know that ultimately this will be the place that Maryah will go to stay until she is called to her true Home with God. We are grateful that this place is being offered to us and that we are able to get her someplace with such a peaceful calm where they are trained and specialized in caring for those that are dying and their families.

Maryah will move tomorrow morning and I would just like to reiterate that our request for private family time still stands. We certainly realize that so many of you still really would like a visit and time with Maryah but it is not always feasible. We are very grateful to you for respecting our space and wishes. That has been the most tremendous gift during a difficult time.

We will keep updating as much as possible and continue to be grateful and thank you for your loving support and care for our family.

Maryah is such a precious gift to us all and I am so grateful that God has chosen Zach and I to be parents to her. We are saddened by facing such a huge loss. He has chosen this path for us and our complete faith is in Him and His plan for our family.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, April 23, 2010 9:45 PM CDT

Good Evening,

We hope you are heading into a relaxing and refreshing weekend!

This past week Maryah has been stable and overall fairly good. She has had lots of medications to help resolve the sinusitis and with round the clock nursing care she has been doing very well given her current circumstances.

In the last couple of days we have been faced with some decisions about whether Maryah will stay at the hospital, leave the hospital and stay at a hospice residence in St. Paul or possibly come home with full-time nursing care. Our options became more limited as we recognized that the home care would not be covered by insurance and certain services not available at the hospice residence.

Zach and I have been working through some decisions with Maryah as to what might be our best option. The main issue is that if there is no medical reason to keep Maryah at the U of M the insurance may decide not to cover her stay...so we need to consider that and make any necessary changes.

With a fever and antibiotics necessary currently she is okay to be at the U of M for now. We will know more about where she will be staying early next week.

We will keep you updated as we know more but rest assured Maryah is feeling pretty good, she is happy and she is enjoying time with loved ones.

We are grateful for the staff at the U of M and they are really wonderful with Maryah and with us. We know that if the need arises that they will be there to take things on for us but for now...Maryah is stable and well and there is not an impending need for her to be at the U of M. She says she doesn't feel she is dying yet, Zach and I would have to agree. She has some things on her agenda yet and we are ready to move ahead. I am more than happy she is making a liar out of me and everyone else who has said she is not doing well...it's not our timing...we are learning yet again!

More updates to come.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, April 17, 2010 0:14 AM CDT

Good Morning,

Just wanted to get a quick update out. Maryah had worked on a journal entry yesterday however it got deleted somehow. Unfortunately her work/writing is what I know you would all prefer to read but you are stuck with me for now.

Maryah is still at the U of M today and we have been working with the doctors dilegently to help make her comfortable and help her through the problems she has been experiencing.

The symptoms of sinusitis are still a problem and swallowing has become more difficult making eating more difficult as well. Zach and I have been having to lift Maryah since her legs have grown weaker and even more so this week Zach has had to do almost all of the lifting as her legs are nearly useles to her. Her vision has become a little blurry again also.

These are all difficult things to write about and even more difficult for her to experience. Worse than that we can't take them away so sitting idly by being helpless just simply stinks beyond words.

There are discussions happening about whether Maryah will come home with much more care from her hospice team in place or possibly stay at the U of M where she is familiar and has great care. Eventually as the time nears that Maryah will pass she will be at the U of M. This is a decision that we have made as a family already for a multitude of reasons. The discussions now are to determine if now is near that time enough for her to decide to stay. Maryah's decision is to stay and that is what she is vocalizing to the doctors. It is a decision I can respect and appreciate given the difficulties she endures.

I want to assure you that these family decisions have been difficult to make and although I am sure there are many opinions about how we will handle these days with Maryah it would be greatly appreciated if you would keep those opinions. I apologize if that sounds harsh but there are are a few that have chosen to share their opinions with me and honestly...we don't need that now.

I want to also ask you in advance and thank you for your cooperation for not bombarding this family with requests to visit Maryah. She is resting most times and she herself does not want a ton of visitors. We are letting her direct this aspect and we ask that you do not text HER or contact her directly about a visit but rather you talk to Zach or me about it.
It is difficult to choose who should come and go at this point and avoid this becoming the "three ring circus" it could and keep it serene and peaceful like it should be.

We always feel hesitant to post that piece because we've had such undying, gracious support and to turn people who love us, love Maryah away is difficult. We hope you will understand this and support Maryah with these decisions.

We thank you for your support, for your love and for your continued kindness and caring of our family, most especially our precious daughter.

This is a difficult time, it has been difficult since January 5, 2004 when she was diagnosed. We are all trying to work through the pain, sadness and even happiness that comes with death and although we have been very open and honest about all things there always comes a time for privacy, quiet and peace...we are calling for that time now.

Much love and many blessings,
Rachel/Mama
"Ma Perez"

Thursday, April 15, 2010 6:36 AM CDT

Good Morning,

Just a quick update to let you know that Maryah is still at the U of M. We aren't quite sure what the plan is yet. Yesterday brought a swallowing test to determine if there is any problem. There appears to be some difficulty but we are working with the doctors to figure it out.
Maryah has had a lot of trouble with the thick mucous and crud that comes with sinusitis.

Between Maryah's two Moms and two Dads as well as Nuna we are all working on taking care of our big, crazy family and being there for Maryah so she can feel calm and peaceful. There isn't a day that doesn't bring it's challenges but we are all working to make sure things run smoothly.

Maryah's pain is under control and she is getting the quick attention of docs and nurses while she is at the "hotel" and that's helpful when she feels miserable.

We are hoping and praying this too will pass quickly and she will feel much better very soon.

We will keep you updated as anything else comes up.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, April 11, 2010 8:11 PM CDT

Good Evening,

Just a quick update on Miss M. This past week has been a great one. Maryah has been up and at 'em. She decided at the beginning of the week she wanted to do all things she thought might be fun, including seeing friends and going some places she wasn't sure she would be able to make it to again since she has grown a bit weaker. The week started with going to the dance studio on Monday to visit friends and watch her sisters, Morgan and Libby dance. We stayed and enjoyed visiting for about two-three hours. The fun continued with a visit to Auntie Jo's house mid-week. The drive out was beautiful on a warm, sunny day and we enjoyed ourselves very much.
After a restful but fun day/evening with family on Friday night Maryah attended her sister, Tori's dance competition on Saturday. We had fun at the tail gate party with all the dance girls and watched ALL of our friends rock the stage at Bloomington Kennedy H.S. Maryah cheered them on and had a "perma-grin" pasted on her face as she watched the dancers and enjoyed the love of her life, DANCE! She was officially made a member of the "Senior Dance Line" at DDs when she was presented her b-day gift, a Senior Line sweatshirt with the name TIFT on the back! Tori did fantastic as always and had a blast dancing. We had a blast watching her!

This morning was a restful morning and then...

well, it can't all be great unfortunately. Maryah was admitted to the U of M after a trip to the ER this afternoon. Upon getting ready to go to Dad's with Mo for the week she was having some trouble swallowing due to some crappy cold junk going on. Turns out she has a very bad sinusitis that was causing her difficulty with swallowing a very thick mucus (sorry for those that have a weak stomach). This is an "in the moment" problem according to Dr. Weigel and she is cofident that we can clear it up without a problem.
We aren't sure how many days she will stay at the hospital but we are glad she is there and getting some help with this "problem".

It's so great that we had lots of fun before this speed bump. We hope that you are all enjoying the warm weather and having lots of fun of your own.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, April 3, 2010 5:11 PM CDT

Dearest Maryah,

This journal has been a place to keep our friends and family up-to-date on what is going on with you day-to-day. Today I have been thinking a lot about our time together for the past 16 years and I have decided to use this journal to speak directly to you and share some of my thoughts as a "journal" and part of your/our "human story".

When you were born I was SO young, I had no idea how to be a good mom, no idea how to be any kind of a mom but you made learning VERY easy. You were such a sweet baby, an easy baby. You slept sweetly and snuggled regularly, you were quiet and calm (most days) and when you weren't you had good reason and your "problems" were easily fixed. I remember sleeping with you in the nursery and how warm and snuggly you were but how absolutely tiny you were at just a little over 7lbs and how afraid I was to break you.
I have been thinking a lot as the weather warms up about when we moved to our apartment on Ford Parkway and how you and I would eat our supper and then get the stroller ready and go for our nightly walk. We would walk down Ford Parkway across the Ford Bridge and over to Minnehaha Falls where we would swing for an hour or more and watch the pretty falls over the bridge. Then we would walk back and on the way we would always stop at the little play ground at the church down the block from our apartment. You would play, mostly on the slide and then we would walk home, you would take a warm bath, get into jammies and sit on my lap while I read you a book. Then it was off to bed to "snuggems" until you fell asleep every night. Every single morning I would awake to you over your crib railing (and eventually standing next to my bed) quietly yelling "Mama, MAMA" until I would get up and come to get you.
I remember in that same apartment when you would run as fast as you could into the kitchen, stand by the wall then turn around and run at full speed back to the futon where I was sitting and JUMP into my arms where I would flip you backwards. You did this for hours on end and you would laugh each time as hard as you had the first time I did it. I remember how excited you were when you first saw "our bunny" outside the apartment window and how excited you would get every time he came back to "visit".
I remember when you and I saw the ocean, both of us for the very first time when we traveled with Nuna to the East Coast to visit Great Grandma and Grandpa Allen for their 60th wedding anniversary. I remember that the moment we crossed over from the parking lot into the sand of the great Nauset Beach you saw the water and you ran at top speed directly toward the water. You had on your ivory turtle neck with the little tiny pink flowers and your bright pink, courderoy Osh-Kosh overalls and your pink and yellow fleece jacket (it was late September so it was pretty chilly by the water). You ran all the way to the ocean's edge and sat down where the waves washed up over your lap and tummy. You LAUGHED so loud I could hear you as I was running to retrieve you before you got wet! I was too late, you were soaked and smiling ear-to-ear. I picked you up and you wrapped your arms around my neck and laid your sweet head on my shoulder all before I could take in the sight of the ocean (which I had never seen in my life). I was in awe of the beauty of it and how absolutely amazing it felt to stand beside the ocean and especially with you wrapped around me! It was one of the best days of my life. I keep that picture where I can see it every day! It's one of my very favorites!
Some of my best memories with you involve us playing in the waves at the ocean's edge, Cape Cod, Cocoa Beach, the Florida Keys, California when we went to visit Uncle Richard and Aunt Joanne.
There are memories of us going to the cabin with Auntie Jo and Uncle "Nums" and swimming in the lake, going for pontoon rides and you and Dorian riding around in the golf cart...the golf cart...that reminds me of the first time Dan and I brought you and Mo to the camper when you ran the golf cart into the deck and spilled out...it was kind of hard not to laugh. Sorry kiddo but you have to admit it was funny! This of course reminds me of the many bon-fires we have sat and cuddled around and the fun we have had as you have grown into a young lady. The many laughs we have had and the many good times we've shared.
I cannot even begin to list them all here today but this is just a small portion of the incredible memories you have given me in my life and I wanted to share. I hope you always know how you have touched my heart, changed my life and made me into the woman I have become. You made me a Mama (Mom,Mommy, Ma, Ma Perez, Old lady, etc, etc). You taught me patience (some anyway), unconditional love, strength, kindness, empathy, compassion, grace under pressure, great faith and how to be good even when I don't feel like it! Thank you for always being here with me, for me and making life fun, interesting, lively and full of joy!
Thanking God for you today and everyday. Just wanted to share my thoughts with you. Most of them I share when we talk but today I thought I would share with everyone...hope that's okay my love.

All my heart,
Mama

Tuesday, March 30, 2010 7:04 PM CDT

The update part of this entry is Maryah is in the hospital. After non-stop coughing for a few days and cough medicine not working too well, low energy, not being able to swallow meds, and some difficulty walking, Maryah was admitted to the hospital yesterday. She is rest and doing well. She wants to be clear though that she is NOT dying. Not now!

The story part of this entry is yesterday morning Morgan and Azaria woke up and came out to the living room where they woke me up - after crashing on the couch - with laughter and hugs. As the girls were getting dressed and ready for the day, Maryah was still sleeping, which was pretty unusual for her. Nuna came over to stay with Maryah while I went to work. Maryah heard me yell from the living room for Morgan, who was in the girl's room, to hurry up because we had to go. So Morgan ran out of their room, stopped suddenly in the hallway, ran back in the room, gave Maryah a kiss on the forehead, whispered "I love you", then ran out to me. Maryah just smiled to herself, then shared this story with me last night...so I had to share this with you because it speaks volumes of the deep connection and love M&M have for each other.

Gotta get back to the Champ...take care and God bless!
Zach/Maryah's Dad and Ringman (retired)

Sunday, March 28, 2010 8:20 AM CDT

Good Morning,

I continue to appreciate all of Zach's wonderful updates. I have taken to hiding during the past couple of weeks since we have welcomed Maryah's new baby brother Daniel Thomas Perez Jr. (Danny) into our big, crazy family! The kids have all been enjoying the baby and Maryah particularly. We are grateful for the time she has gotten to meet him and spend some time really loving him up and enjoying him. I am so grateful for that!

Recently I have received an e-mail from a woman I met along this journey. Her daughter had Ewings and she and Maryah had really followed a very similar pattern of treatment and recurrence. She would go through it and then Maryah would. This young woman passed in October and that was a really hard kick to the gut for me. This lovely, supportive woman shared in this recent e-mail that this is really no longer about cancer it is simply now a human story. Much like Zach's most recent post...this journey, march, fight is Maryah's human story.

I have chosen to "hide" these weeks so that I could enjoy and get used to being a new mom again and to enjoy my time with Maryah. It's hard to share her with everyone daily and not have time to have conversation and time shared. So we made up for some of that this weekend. One of the things we talked about is that cancer has NOT won...cancer NEVER got the best of Maryah, she is the truest form of survivor. It certainly doesn't make this easy for her to accept and deal with the very real fears and sadness that anticipation of passing brings. We have great faith and Maryah knows that God is waiting for her. This brings some peace but it doesn't take away all of our sadness about loss.

With this said...we are happy and we are having WONDERFUL times together. We are having great conversation, we are making memories, we are loving and hugging the heck out of each other and we are learning to NEVER take our days for granted.

We are grateful for the open support and love, prayer and kindnesses that are coming from our very LARGE community surrounding us. I can't say that enough. I also need to offer thanks to all for allowing us to have some time alone, without visits, to be able to surround ourselves and Maryah with family. When sharing this human story so openly it has been hard to pull back a bit from others who so naturally want to visit with and be part of Maryah's life. We just simply are grateful for this private family time.

Hoping you are enjoying the entrance of spring. We are SO enjoying the warm sunshine and warmer weather. Spring is one of our favorite times. Of course for Maryah because it's birthday time. She will turn 16 on May 7th!

Love and Blessings,
Rachel/Mama

Friday, March 19, 2010 1:10 PM CDT

"People who live the most fulfilling lives are the ones who are always rejoicing at what they have." - Richard Carlson

Maryah vowed to live life fully...and we are fulfilling this vow because we rejoice and cherish all we have and all we will continue to have. We know we cannot rewind time, but we can replay the good times by rewinding the memories. Thank you all for being part of our memories and our collective story...
Z

____________________________

It's been a while since we've updated. Our apologies...

We had to stop radiation on the brain tumor. Maryah still needs two more sessions of radiation for that tumor, but that's on hold. Earlier this week she couldn't lie down for radiation - the pain was too intense. There is nothing like hearing your child crying out of excruciating pain from behind closed doors and knowing you can't do anything about it...except to pray for their comfort. The doctors were great though. They immediately stopped radiation and we made a plan.

We were able to bring her back in the next day for an MRI -she was sedated - and that showed tumors in her spine pushing down on her spinal chord, causing pain, numbness, and other side effects. So, for now, she's sitting up while they radiate her spine. She had three sessions this week. Next week she'll probably be able to lie down because she usually responds really well to radiation and the pain won't be so intense. Once she can lie down they'll be able to resume radiation for the brain tumor.

There - that is our logistical update.

Emotionally - it's a constant ebb and flow from one end of the spectrum to the other...like an ocean's high and low tides. We're in a place where we go with it and allow ourselves the freedom to drop tears, and the liberation to believe those tears are watering blessings that are all around us just under the surface.

Weeks ago the Champ said she was done fighting. As her dad it seemed like every part of me was yelling against that idea...though as her Ringman I knew it was time to listen to what she wanted. So that means we're not putting on the mental/emotional armor that we used to. For now, we're cherishing life and being in the moment. We're having very real and open conversations about transitioning from where and when we are, to after life. One part that has been difficult for Maryah is knowing "when we pass, that is forever...and Daddy, forever is a long time". So that night - one of those middle of the night conversations - we discussed what this means as it ties into our faith...and through our talks we were reminded that everyone dies, we just die at different times...and we now think a reason we all die at different times is so God can personally welcome us "home". And since heaven is home, everyone, at some point will return home some day, so there is little need to miss anyone because eventually we'll all be together again. This time on earth is just a little blip in the passage of time. Having this story-like conversation brought comfort to Maryah and, I have to admit, brought reassurance to me. Sometimes just winging it and having fun with a child-like imagination can bring comfort and peace...and having a piece of mind in the middle of the night is priceless.

To those of us who may need to say a few more prayers to get to heaven - Tift's and Emerson's...git to it! It ain't too late!

Seriously though, may our days and nights be filled with love, grace, peace, comfort, and joy.

Zach
Maryah's Dad...and Ringman (retired)

Thursday, March 4, 2010 3:40 PM CST

Good Afternoon,

If you haven't gotten a chance please take a minute to go backward and read Zach's entry about the trip to AZ and CA!

Today has been a very busy day and I wanted to update you about Maryah and what's going on currently. A lot fo people have asked and we haven't necessarily been keeping you updated on the day-to-day situations.

Today we went in for a routine visit to get a platelet transfusion and as Maryah talked with her docs and explained she was experiencing some double vision in her right eye we started to notice that her eye lid was a little droopy. Well, that got everyone thinking and to make sure that she is comfortable and able to maintain good vision and other important function we decided to consult with Radiation Oncology.

We did an MRI this morning and determined that there is in fact tumor growth in her head and one tumor in particular that is directly in between and behind her eyes that is affecting her vision and causing other symptoms that are aggravating. So...we are going to do about 10-15 sessions of radiation to irradiate the tumor and some other small spots for symptom relief. Maryah has always had a positive reaction to radiation so we are all confident that this will be helpful.

We will keep you updatated as we go along but for now please know that Maryah is in good spirits, she is enjoying time with friends and family, her pain is under control and she is getting help for other aggravating symptoms.

Thank you for checking in and we will be back to post more soon!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, March 2, 2010 12:20 AM CST

A thousand 'thank yous' to Brother Michael Lee, Pat Sweeney, Captain Damon, and Ms. Marilyn for the many gifts on this amazing trip. Everything came together perfectly. When God orchestrates something, it's done all the way.

Pat and Damon flew into St. Paul's Holman Field and picked us up, brought us to Glendale Airport (only 15 minutes away from where we stayed), and my Aunt Sherri and Uncle Jim picked us up. We went back to their house and my father and his family joined us for relaxation under the palm tress and the sun on our face, followed by our favorite dinner of butterflied shrimp and crab legs. We then drove to South Mountain where we spent time on the mountaintop and watched the sun set and marveled at the lights of Phoenix.

The next day Maryah bought us lunch at a famous little Mexican joint, and then we took off to Santa Monica where they flew us by the Hollywood sign and landed at a small airport and had a van waiting for us to drive only 15 minutes away from the beach-front hotel (look up http://www.shuttersonthebeach.com). We had two adjoining rooms so it felt like a huge suite. The beds and pillows were the most comfortable we've EVER slept on! The rooms had whirlpools and balconies that overlooked the ocean. Brought the girls shopping on Rodeo Drive. Maryah got some cute things, and then we went back to the hotel and ordered room service - dinner and desert.

The following morning Maryah was in pain so she booked a message for her and Kayla...they both loved it! My cousin Rob - God bless him - who lives in California, just far enough from where we were staying to fly, met up with us. Rob, for years, has offered to teach us how to surf since he caught wind that Maryah and I used surfing as a visualization to help ease pain and calm us. Maryah was not up for surfing, though we had plenty of excitement at the ocean. It was fun having Rob with us while at the beach. Maryah loved having her feet in the water. The ebb and flow of the waves were followed by shrieks of excitement as the cool water rushed in and surprised Maryah. Some waves wouldn't reach her, and then out of nowhere waves would come in and rise almost to her hips as she sat in her wheelchair. I'll never forget the look on her face and the sound of her excited shrieks amidst the waves, seagulls, and Mo's constant chatter (said lovingly). Kayla and Morgan had fun in the water. Mo got blasted and knocked over by an unexpected wave. Being the comedian she is, she had us cracking up with her dramatic antics of coughing and fake blindness caused by the saltwater. Kayla had to guide her back in to us where she continued to put on a show. I have pictures and I will hopefully be able to post this episode. Maryah sat in her chair, feet in the water, and soaked up God's love and grace in the sun and ocean with family. From there we walked down a little ways to the Santa Monica Pier with Rob to meet up with Pat and Damon, shop, hang out, and watched a break-dancing crew; they were very good and had a good message for kids about staying in school. Maryah was in the mood for a corn-dog and while getting them we saw they had funnel cakes - which we've never had before - with raspberry sauce. Yeah...we loved it! That evening I wanted to take them to an Italian Restaurant we'd I'd been years before. On our walk there I wanted to stop at a tree where I met a man 14 years ago who helped change my life. His name was Damon. Society would probably view him as a dirty old bum, but to me he symbolized, while I was growing up, what I thought Jesus was like. Fourteen years ago Adam Delisi and I were in Santa Monica and we hung out with Damon on-and-off for three days. That was the beginning of my spiritual awakening...so I wanted to bring the girls to the tree where I met this man whom I have spoken of since Maryah was a year old. As we approached the tree I looked up and he was there! We hugged, I introduced the girls, and we talked. As we caught up on what's going on, and shared spiritual lessons in life we've learned, Maryah reached in her purse and put some money in his cup. He smiled gently and we continued talking. I have to say, so as not to perpetuate negative stereotype of those who experience homelessness, Damon never asks out loud for money. He doesn't have a sign. He doesn't even look people in the eye. He sits or stands perpendicular to the way people walk down the sidewalk and shakes the change rhythmically in his hand or cup. Later, after we walked around the corner, I asked Maryah how much she gave. She smiled...but didn't respond right away...so I asked again. She gave a $100 bill. That's Maryah. Years ago Damon told me that once in a while someone will give $50...and with that money he goes to the store and gets canned food, then goes to the mountaintop for "a long time". Wonder what he's doing now...

The rest of the trip was fantastic...we relaxed in comfort, ate incredible food, and Pat treated us like royalty...making us lunch on his personal, fully-stocked Lear 60 Jet (the biggest, nicest, and fastest of the Lear Jets). I don't say this to sound arrogant...I say this to display how much of a gift we were given.

While on the trip...on the plane rides, on the mountaintop, on the ocean, during five o'clock in the morning prayer time while listening to the crashing waves, through the evenings, and in conversations with Maryah and the girls...we gathered ideas for a timeless message to be shared at a later time. One component that I will share now is that of "tangible love". Love is often an abstract, even confusing, concept because it's used in so many ways and love comes in so many different forms. The love we have with our spouse is far different from the love we have for our children...which is different from the love we feel for our family and friends. And yet through all of these different kinds of love there is a common thread through all of these...a thread that connects us all. All of us are loved by someone...and we know this through "tangible love"; love that is not just a concept...but love that is tangible through acts of kindness.

So, on behalf of Maryah and our family, we 'thank you' Brother Michael Lee, Pat Sweeney, Captain Damon, and Ms. Marilyn for sharing this 'love' with us.
Zach/Maryah's Dad & retired Ringman

Wednesday, February 24, 2010 12:28 AM CST

Good Morning!

What a beautiful, sunny morning it is! I want to take just a moment before updating on Maryah to thank Zachary for continuing to journal and keep everyone updated. You see my daughter is far stronger than I, far wiser and far more able to handle life with a smile!

While we have had to disseminate this news over the past several weeks we have also had to take it in and process it ourselves. We have had many talks as a family, we have done much planning, more talking and mostly a lot of loving, leaning on each other and remembering that God is really in complete control and that is good!

On many days it has been hard for me to even consider publically discussing this change of events, it has been difficult to share just how angry, sad, frustrated, etc I am. I have chosen to take these few weeks to just "be" with God, with my family, with Maryah and not share for once in six+ years. I am grateful Zach has been able to share and that where one of us is having difficulty the other can pick up and help. We have all been a great team and will go on to be even better. For that I am more than a little thankful! Thank you for your patience and for being here to offer us loving words of support as you always have!

This morning Maryah along with Zach, Morgan and Kayla boarded their plane with smiles bigger than I've ever seen and geared up for their adventure to the mountains and the oceans. Today will be the day they spend in Arizona amongst the mountains and family enjoying each other and what I'm sure will be a meal prepared with all the love her great big teddy bear of an Uncle can muster! :) He is a fabulous cook and I must admit I am just a tad bit jealous (hint hint Uncle Jim)! They will enjoy the sunset and city lights from the mountain top and then as if to "cast the mountains into the ocean" (Matthew 21:21) they will be off tomorrow heading to the Pacific Ocean.

I imagine (knowing my daughter to be much like her Dad and I) she will spend the majority of her time with her feet in the sand and surf taking pictures, soaking up the sun and the scenery around her. I imagine the laughing, the joy and the serenity.

This trip is truly a gift unlike any other and I am truly humbled by the kind and generous people who have given Maryah this amazing gift. Zach and I were unsure how to make this happen and felt so defeated when it was something she so wanted and we didn't feel we would be able to make it happen. Now, here we are and she is off, traveling as I type!

After taking a ginormous amount of pictures this morning I was walking to my car and watching the plane leaving the ground. In the background, as if God needed to remind me of His grand plans the church bells from my family's church set atop the bluff overlooking the airport were ringing clearly in the distance! This is the church where Maryah was baptized as a baby. As if I could ever forget who is in charge!

Thank you for your continued support and love. I am overwhelmed by just how many loving, kind and generous people are out there and willing to wrap their arms around our family.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, February 21, 2010 1:55 PM CST

Maryah wants me to share some exciting news!

Due to the extreme kindness of Brother Michael Lee at Cretin-Derham Hall and the generosity of his friends...Maryah, Morgan, Kayla (Maryah's best friend), and I are able to experience the top items on Maryah's bucket list - "go to the mountains and the ocean".

Wednesday morning we are flying from the St. Paul airport to Arizona where my Aunt Sherri and Uncle Jim will pick us up. We'll be in the sun and listen to the whisper of palm trees. My father and his family will join us for Maryah's favorite dinner (shrimp and crab legs). After dinner we're going to drive up to one of the mountaintops to watch the sun set and the lights of Phoenix.

The next day we are flying, upon suggestion, to Malibu where we'll have a van waiting for us...then we'll be staying at a place overlooking the ocean. We'll have coffee in the mornings from a balcony while smelling the ocean air.

Maryah wants to "be" at the ocean most of this time. Since she began making this bucket list, the ocean has been on top. During one of our MANY middle of the night conversations, before we found out of this gift, she told me she wasn't sure if we would be able go but how much it would mean to her. Now that we know her dream is becoming reality she keeps saying over and over again how thankful she is to be able to go to the mountains and ocean...and how this journey is calming her spirit...how she is feeling more and more comfortable with the process of passing on. The Champ feels like the journey is helping her to let go amd to feel 'serenity'...letting go of the fight; letting go of the pain; letting go of worries...and is balancing her concerns with the joy of God's love and grace.

"To whom much is given, much is expected"...and so we understand this blessing is bigger than a trip. We understand that this blessing will continue to reverberate outward and impact us all through our interconnectedness. On this trip we will outline a message to the world, inspired by this gift of love and grace; a gift which will allow us to see what there is to see from the mountaintop, and experience peace and liberation from the ocean.

We'll update more soon. Love, grace, and warmth to each of you...
Zach/Maryah's Dad & Ringman

Sunday, February 21, 2010 1:55 PM CST

Maryah wants me to share some exciting news!

Due to the extreme kindness of Brother Michael Lee at Cretin-Derham Hall and the generosity of Patrick Sweeney (CEO of Fargo Jet), Maryah, Morgan, Kayla (Maryah's best friend), and I are able to do the top items on Maryah's bucket list - go to the mountains and the ocean.

Wednesday morning Mr. Sweeney will pick us up in his personal Lear Jet at the St. Paul airport and personally co-pilot the flight to Arizona where my Aunt Sherri and Uncler Jim will pick us up. We'll be in the sun and hang under the palm trees while swimming in their pool. My father and his family will join us for have her favorite dinner of shrimp and crab legs. After dinner we're going to drive up to one of the mountaintops to watch the sun set and the lights of Phoenix.

The next day Mr. Sweeney will pick us up and, upon his suggestion, fly us to Malibu where he'll have a van waiting for us...he's putting us up for two nights in a room over-looking the ocean with a balcony, right on the Pacific Coast Highway.

Maryah wants to "be" at the ocean most of this time. Since she began making this bucket list, the ocean has been on the top. During one of our MANY middle of the night conversations, before we found out of this gift, she told me she wasn't sure if we would be able go but how much it would mean to her. Now that we know her dream is becoming reality she keeps saying how thankful she is to be able to go to the mountains and ocean...and how this journey is beginning to calm her spirit and how she is feeling more and more comfortable with the process of dying. The Champ feels like like journey is helping her to let go in the ways of 'serenity'...letting go of the fight; letting go of the pain; letting go of the tiredness...and is balancing her concerns with the joy of God's love and grace.

"To whom much is given, much is expected"...and so we understand this blessing is bigger than just a trip for us.
We understand that this blessing will continue to reverberate outward and impact us all through our interconnectedness...on this trip we will outline a eulogy...a message for the all of us, inspired by this gift of love and grace; a gift which will allow us to see what there is to see from the mountaintop, and experiences in the ocean.

We'll update more soon. Love, grace, and warmth to each of you...
Zach/Maryah's Dad & Ringman

Monday, February 8, 2010 12:23 AM CST

...find a comfortable pair of shoes.

Over the last week Maryah kept talking about a pair of shoes she wanted and asked if I could bring her to the store and she'd buy them with her own money. She kept on and on about how much she wanted these shoes. I said I'd bring her, but it puzzled me why she was so adamant about these shoes. Then, after a few days of hearing about them, she said, "Dad, I've heard you say for a while you'd like some black boots, so lets get them...it’s a metaphor for walking together, we'll need them".

Maryah is saying to us, despite the news from 12 days ago, the journey isn't over. There are many of us and there is strength in numbers. In the last 12 days there have been nearly 13,000 hits on this webpage. The news has hit each of us in our own way and we will keep going together...so put on your comfortable shoes and keep walking with us.

We went and got the shoes; they are very comfortable running shoes. You guys, despite some physical limitations the Champ still wants to, and feels like she can, run! We have come to this space, place, and time that is full of uncertainty and yet she reminds us of the fierce urgency of now to keep going...to keep living. The docs said we are out of "medical" options". So!...she is wearing RUNNING shoes!

This is no time to engage in the luxury of cooling off or to take too much time to feel down and out - feeling depressed. Speaking from experience. Honestly, lately I've been angry about all she must endure...and I know I am only angry because of what I fear. She and Morgan helped me pick out some boots so I can march on over that fear. Maryah is leading this walk. We must rest when we have to, bring our pain and give out thanks to our God, then lace-up. The Champ used to lace-up her gloves, but she retired from the ring and now is excited to lace-up her shoes.

Now is the time to make real the promises of LIVING. Now is the time to rise from the lonely and desolate valley of sadness to the sunlit path of "faith, hope, and love". Now is the time to lift ourselves from the quicksands of doubt and worry to the solid rock of God's grace. Now is the time to "BE" and by doing so we allow ourselves TIME to walk together.

Love and comfort...
Zach/Maryah's Dad & Ringman
"Pray hard, walk tall, do right"

Wednesday, February 3, 2010 1:54 PM CST

It has been eight days since we had the big talk with Maryah's primary doctor; eight days since Maryah wrote her journal entry, when she put words to what we've feared daily for over six years; eight days to allow those same words of hers to comfort us as we witness the strength of her truth and the grace of her spirit; eight days for us to go to God to come to a deeper understanding; eight days of foreseeing the rippling effects of this news that will reverberate through the ages; eight days to grieve the realness of this challenging pain to God and for God to convert our pain into Blessings; eight days for "The Champ" to make the distinction she is NOT giving up...rather to decide she is done fighting - retiring from the ring - and "Hanging up the gloves"; eight days to accept that God ultimately is the One to call her home; eight days for this Ringman to finally write and update you and to apologize for it taking so long.

Just so you know Maryah's pain is under control (for the most part). The Champ is taking the news head on, talking about her feelings, saying the things she needs to say, accepting it, "snugguming" (how she used to say "snuggling" when she was little), and enjoying making plans for her "retirement" from the ring.

May we continue to pray for those of us who are suffering in any way...that we continue to seek, feel, and share God's love, grace, peace, comfort, and joy...
Zach/Dad/"Ringman"

Wednesday, February 3, 2010 1:17 PM CST

It's been eight days since we had the big talk with Maryah's primary doctor. Eight days since Maryah wrote her journal entry when she put words to what we've feared daily for over six years. Eight days to allows those same words of hers to comfort us as we witness the strength of her truth and the grace of her spirit sink in. Eight days for us to go to God to come to a deeper understanding. Eight days to try and forsee the rippling effects of this news that will reverberate through the ages. Eight days to give the realness of this challenging pain to God and for God to convert our pain into Blessings. Eight days for "The Champ" to make the distinction she is NOT giving up...rather to decide she is done fighting and retiring from the ring by "Hanging up the gloves". Eight days to simultaneously accept that God ultimately is the One to call her home. Eight days for this Ringman to finally write and share this with all of you.

Just so you know Maryah is taking the news really well, talking about her feelings, saying the things she needs to say, accepting it, "snugguming" (how she used to say "snuggling" when she was little), and enjoying making plans for her "retirement" from the ring.

May we continue to pray for those of us who are suffering in any way...that we continue to seek, feel, and share God's love, grace, peace, comfort, and joy...
Zach/Dad/"Ringman"

Tuesday, January 26, 2010 8:31 PM CST

As my Dad and I sit here to write this entry, words are hard to find. I want to share what we were told by my primary doctor today...and that is my battle is coming to an end...there are no more medical treatment options.

I don't want to "beat around the bush" and for us all to know I will eventually die.The doctors are not sure when this will happen but are anticipating that I will be here for no longer than a year. There, it was said. That is the reality I've faced every single day for over six years...and now - in the ways of grace - there is a sense of relief about it being said out loud. Although the thought of dying scares me more than anything I am trying to look on the bright side of passing on. Such as seeing my amazing grandma Mary (whom I have never met but heard amazing stories about).

The news is hard. The saddest parts for me are when I think of all of my sisters and brothers and not being there for them. Especially Morgan to whom I am particularly close since knowing her when she was just a few hours old...and all we've been through together, like traveling back and forth with her from moms to dads home every other week. She is an amazing young lady and she has helped me go through so much by helping me with every last little detail when I am not feeling well or even when im feeling great. My other siblings are great too and have been helpful.

I am getting very sore and am going to go back to my "hotel room" to get some rest but when I am home which will hopefully be tomorrow anticipating my pain stays under control my mom, dad, or I will update you all again and let you know how things are.

Thank you all for your love and prayers. All my love. God Bless

Maryah/ always THE CHAMP!

_____________________________

We're all so proud of how Maryah has fought! And how she will continue to battle on. As we all know that fighting a good fight is not just physical...it's mental. As the crowd cheering her on I sense we might need something to pick us up to help us get back into the mental focus we need to continue...so watch "The Champ is here!" chort clip - http://www.youtube.com/watch?v=ipHv9Xdj-Oc&feature=PlayList&p=F955437974DA0174&playnext=1&playnext_from=PL&index=25 . Anytime you see Maryah...just know "The Champ is here!".
Zach/Dad/Ringman

Monday, January 25, 2010 9:22 PM CST

Usually we wait to update until we have already gathered all of the details, confirmed what we've been told, made a plan, and have had time to process. However, exigent circumstances allow for openess during this time.

We were told by doctors that they are seeing some tumor growth in her hips and legs - and scans are showing it is also in the marrow. Maryah and Morgan both know that the #1 rule is 'never panic' - and now is no different. This is not good news, however, Maryah is taking this latest challenge head-on and vows to continue living life fully.

We're not exactly sure what this means. This news can be hard to accept. For now, we ask for some space while we figure out next moves. We will keep you updated. Tomorrow we'll meet with her primary doctor and figure out those steps.

There is a chance that she may not be able to continue in this clinical trial. If verified that it is in her marrow, then her blood counts probably won't come up on their own. Her primary doctor already told us she would not recommend a bone marrow transplant - her body couldn't handle the stress. Chemo and radiation were already taken off the table.

But rest assured Maryah is hungry...and we're cooking with the best ingredients to life; love, grace, peace, comfort, and joy. These ingredients fuel us to pray hard, walk tall, and do right together.

Peace be unto you,
Zach/Dad/Ringman
_______________________________________

I am grateful for Zach and his ability to put some information out there for you all to keep up-to-date. After several phone calls and text messages this morning I just need to remind folks that at the moment we just need a bit of space to breath and take in this information. There are more meetings with doctors, questions to be asked and answers to be sought. We are not firm on any information yet and therefore have given just the preliminary information which we know is difficult to hear/read.
We know that so many of you are invested in this journey with Maryah and you have been our constant support and have brought us so much help and peace. We also know that there are many who want to visit, send their love and support and we want that, just after a bit. It's hard to know how to "make this work". We will figure it out as we go so please be patient and know that we are here updating you because we care about all of you and want you to continue this journey with us. When there is a good time to visit, call, etc we will be right here to let you know when/where/how.
We have nothing but gratitude for all of your love and support. Thank you for being here with us and for inveting so much in our family, in Maryah.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, January 22, 2010 10:20 AM CST

Good Morning,

Today I remembered how fortunate I am to work in a Christian based organization that allows for us to pray at the start of each day, to have devotions with each other, to pray as frequently as we would like to publicly or privately, to pray together, for each other and with each other, to pray before we do virtually anything. This is such a blessing because we get to be God centered throughout each day allowing us to remain focused on the tasks that we are here to do in His name. It also allows us to know eachother personally and to share our needs, our thoughts, our burdens, our joys, etc...

This morning at our first meeting of the day we prayed for Maryah as we do most days although I asked for very specific prayers for her and I thought I would come back here to this site and ask for all of you out there praying to focus your prayers on some specifics. I understand that through God absolutely anything in His will is possible so...these are the specifics I am requesting prayers for:

1. Please pray that Maryah's platelets recoup to over 50,000 by next Thursday morning and stay up each week so she can remain on the clinical study.

2. Please pray that Maryah continues to show positive progress on this study so she can continue.

3. Please pray that Maryah's pain decreases to little or nothing so she can go about life as she would really like to.

4. Please pray that Maryah can get discharged from the hospital today or tomorrow at the latest and come home with no complications.

5. Please pray that Maryah can remain out of the hospital, feeling well and be able to attend school.

6. Please pray that our family (all of us) have peace, calm, ability to find joy in each day and a rest from the trying times.

7. Please pray for God to perform a miracle in Maryah's life so that she may continue to live life to the fullest and continue to bless each of us that she has touched.

8. Help us to offer praise for all the wonderful and remarkable blessings he hs already given us!

Forgive me if I ask too much but I have great faith in God and His ability to work within us and I know He hears us, all of us!

Thank you and have a great weekend! We will keep you updated.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Wednesday, January 20, 2010 8:47 PM CST

Good Evening,

Just a quick update to let you know that Maryah was admitted to the hospital this afternoon. She is in extreme pain and had a fever. Her platelets are low and she needs a platelet transfusion. Unfortunately that means she can't have her scheduled infusion tomorrow because she has to have a platelet count of 25,000 or more and hers are currently 11,000.

Hopefully with a little luck she will be able to recoup her platelets by next week so she can continue her infusions. We are also praying for quick pain relief so she can get home quickly.

Maryah has had a really great five weeks and we hope that she will continue to have good pain control and that the fever is nothing more than pain induced.

We will keep you updated as things change. Thank you for checking in and for all of your support and prayer.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, January 5, 2010 6:15 AM CST

CHECK OUT http://www.youtube.com/watch?v=K4nlOw5gLms TO SEE A CHRISTMAS VIDEO FOR MARYAH FROM THE CRETIN-DERHAM HALL FAMILY!

Good Morning,

Just a few minutes ago Maryah was up and out of bed promptly to head out with her sister and brother in the blustery MN cold to attend school for the first time in many months!

With multiple hospital stays since July and pain that has given her great limitations she is finally feeling well enough to get in amongst her friends and community at Cretin-Derham Hall and get back to work!

This is significant and one more way Maryah has decided to face cancer head on and remember that it cannot cripple us. Today, January 5th, 2010 is six years to the day that our world was changed forever, the initial diagnosis of Ewing's Sarcoma given to us by Dr. Roby Thompson at the U of M. It was a cold day then, it was a sad day and a day of many unknowns. TODAY however may be cold but it is not sad, and although there are still many unknowns there are far more things we know. The most important thing we know today is that cancer doesn't get to take control of us! This is apparent by the fact that Maryah left this house walking on her own two legs, with her bald head held high (covered with a hat because of cold today though), a smile on her face and excitement in her heart! She beamed at me this morning as she stated "I'm SO excited to go back to school today, I cannot wait to see my friends!"

Although tears have been brewing in my heart for days now, for no real reason other than the significance of this date, I no longer feel the urge to cry in pain but to cry in joy and pride for my daughter's strength and courage.

Six years is a long time to battle, to march, to journey...whatever we may call it day-to-day but in six years Maryah has won each battle she faces. Some have been long and excruciating, some have been shorter but just as difficult, overall Maryah has to keep fighting this war but she is ahead by farther than we could have imagined. Today, we do not celebrate the bad news we received six years ago...today we celebrate Maryah's life, her victory, her character, her love for life and we can cheer for this day. This day has served to teach us all so very much. I thank God for his divine plan in each of our lives and I thank Him for all that we have learned and how much we have grown. I thank Him for Maryah and all she has brought to this world and those of us she has touched so greatly.

Have a blessed day! I already am!!!

Love and Blessings,
Rachel/Maryah
"Ma Perez"

P.S. On this day we are also praying hard for our friend Kayla. She has had some complicated medical situations for a long time that need answers and treatment. Please remember her in your prayers too. She is Maryah's dearest friend and part of our family in many ways. We love her dearly and really hope that she and Maryah didn't need their own episode of HOUSE MD. LOL!

Monday, December 28, 2009 10:53 AM CST

Good Morning,

We had a lovely Christmas. Christmas Eve was celebrated with family and friends and then a quiet Christmas day spent in PJs (well at least I was in PJs...poor Dan was clearing snow)! Can't ask for much more!

This week brings a new year, a new decade and a time for new beginnings. I am faithful that Maryah's clinical trial is going to prove successful this year and that she will make positive progress.

Many folks I know make new year's resolutions...honestly, I have stopped doing that. My only resolution is to live each day to the fullest and remember not to take anything for granted. If I can manage to get through each day without too many difficulties...it has been a successful day! That's all I hope for!

Maryah had her 5th infusion last week on Wednesday and will have her 6th this Thursday. She has been doing quite well with pain issues getting under control more easily at home. She has been able to spend time with friends and family and enjoy herself.

I will keep posting updates when there is more to post. For today, I post simply to wish you all the kind of year we are wishing for in our home...peaceful and full of joy!

A little "story" I have posted in my office at work:

Today, when I awoke, I suddenly realized that this is the best day of my life, ever!

There were times when I wondered if I would make it to today; but I did! And because I did I'm going to celebrate!

Today, I'm going to celebrate what an unbelievable life I have had so far; the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God's seemily simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I'll make someone smile. I'll go out of my way to perform an unexpected act of kindness for someone I don't even know. Today, I'll give a sincere compliment to someone who seems down. I'll tell a child how special he/she is, and I'll tell someone I love just how deeply I care for him/her and how much he/she means to me.

Today is the day I quit worrying about what I don't have and start being grateful for all the wonderful things God has already given me. I'll remember that to worry is just a waste of time because my faith in God and His Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I'll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow is going to be the best day of my life, ever!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, December 15, 2009 10:10 AM CST

Just a quick update to let everyone know that we received results from Maryah's PET/CT scan yesterday and Dr. Weigel is optimistic and states that "she is getting better". There is less activity and her tumors are shrinking. This is the best Christmas gift we could've asked for. We are thrilled and praising God for his great works in Maryah's life and our lives!

Also, please pray for my friend from H.S., Jason Flanagin who lost his wife, Jami last Friday after rare postpartum complications. Jami leaves behind a loving husband and four lovely children including their newborn son. This family will need many prayers and support.
_____________________________________
Good Morning!

We are getting nearer to Christmas and the hustle and bustle is all very exciting. I remember clearly that as a child this was my very favorite time of year as my Mother prepared food for family gatherings and I "helped" her adding spices and a little of this and a little of that around the kitchen table. We had fun wrapping gifts and listening to Kenny Rogers and Dolly Parton's Christmas album (we still listen to it each year). There were always neighborhood friends at the door with snow sleds and boots waiting to run to Cherokee or Baker Park and sled down the hills until our noses and toes were frozen solid or until it started to get dark! The radiator was always nice and warm to sit on when we got inside and after we warmed our tush and hands the mittens and scarves, socks and hats all got laid out on top of that radiatior to dry. Dad would build a fire in the fireplace and we would play games and cards. Everyone in the house was happy and laughing anticipating Christmas! Wow! What warmth those memories bring to my heart.

In our home each year this is the same atmosphere we try and repeat for our kids. We are all anticipating Christmas and enjoying all the fun that comes this time of year. Family gatherings are sneaking up, I am preparing food and goodies and the kids are laughing and excited all of the time! In a house with five kids this is the most amazing feeling in the world. I am so grateful.

Maryah is home, the pain is manageable, she will enjoy the holiday gatherings and we will all be together. It is the best gift I could've asked for this year!

Tomorrow we head over to the U of M for Maryah's fourth infusion. Monday she will have a PET/CT scan that will tell us if her disease process is stable or better (those are the only two options in my mind so I am praying for one or the other). Provided that prayers are answered Maryah will continue her infusions after Christmas again.

Christmas is a time for many types of miracles and the best miracle I can think of (besides the one already given to us in Christ's birth) is for this infusion to be working for Maryah! Please help us pray!

From our home to yours we wish you a blessed Christmas season. Here's hoping you can draw from your good memories and feel the joy of the holidays all around you.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, December 10, 2009 1:07 PM CST

Good day family!

Though I know you want to really hear from Maryah (she isn't by a computer this week at my place), it's still important we update so you all can stay connected and informed.

The Champ will receive the third infusion of her clinical trial in a few hours. I'm taking off from work now to bring her to first meeting with Dr. Carter, the pain management consultant to see about hopefully getting her off the steroid (which she doesn't like) as well as to make any needed adjustments. Then we'll meet with Dr. Weigel, her primary doc...then it's trial time!

Part of this journey is sharing with all of you the logistical updates. From time-to-time we're finding its also valuable to share some of what we're going through. Allowing ourselves to be open and honest is freeing and humbling, and its especially important to be open when situations can seem like they're boxing you in. We encourage you to do the same as we walk together.

The last few nights while I woke up Maryah for meds, we've stayed up talking. We'll talk and pray...confront our fears, shed tears...hold her and just 'be'. It's during these times that we're reminded of all the blessings we have. Maryah, Mo, and I watched the evening national news and they showed parts of Kenya where they've been in a dought for 9 years and had a piece on how precioous water is. Maryah was deeply moved by how fortunate we are...just to have water. Take just a moment to really let that "sink" in (bad pun intended). We walk over and flip on the faucet. Despite all of the struggles, we're thankful for the seemingly small things...like water. This week Maryah has been really thankful for the small things. She keeps saying, in a quiet, sincere voice, "thank you for a warm house", or "thank you for our car". We're thankful for having faith, hope, and love; that we live in a country where we have access to excellent medical treatments; that we have family and friends to help us continue to "pray hard, walk tall, do right".

Gotta run now to get the Champ to her next fight. Love and peace...
Zach/Dad/Ringman

-excuse any errors, two hours of sleep can do that

Thursday, December 10, 2009 10:32 AM CST

Good Morning!

Maryah has been home for a week now! That's fantastic! We are ever grateful for each and every day at home and not in the hospital!

Pain has been up and down a bit but mainly under control. She will meet with her pain doc today, Dr. Carter and he will likely be able to help us steady those ups and downs. Maryah is also scheduled for her third infusion in the clinical trial today. She will then have one more next Thursday and then scans on Monday, December 21st to see how she is responding. Praying hard for fantastic results!

We are anxiously hoping and praying that Maryah's pain stays under control so she can attend upcoming family gatherings to celebrate Christmas. We have much to look forward to and we so enjoy celebrating Christmas around family and traditions.

We will keep you updated as new things arise. It's nice when life is boring and we have nothing to update on!

Wishing you and yours a beautiful holiday season. With our fresh snow fall it looks and feels more an more like Christmas now. Blessings to each of you and please remember how very thankful we are for your undying support of our family.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, December 3, 2009 8:15 AM CST

Good Morning,

Well Maryah made it home yesterday by 3:00 p.m. which was record quick for a hospital dishcarge.

We have a good pain plan in place and plenty of help and resources in place to help us keep her at home.

Her first night home was excellent. She had minimal pain, is able to get around well and is enjoying time with her family again. It's SO good to have her home again!

Today we will head over to the U of M (OUTPATIENT)for her 2nd infusion for the clinical trial (keep praying).

I have encouraged her to update on her own today so you can hear from whom you really wish to hear from!

I would also like to thank all of you who helped at the hospital, at home, etc with all sorts of things that made life easier for us. As Zach said, there was such an outpouring that it would be difficult to list everyone so please know we are grateful for you and all you have done! What a blessing to each of us.

As we begin this Advent season and remember the reason for this very blessed season we will remember also those that surround us with love, peace and support in absolutely everything we do. We pray with you, we pray in thanksgiving for you and we wish each of you a very blessed holiday season!

With much love and many blessings,

Rachel/Mama
"Ma Perez"

Wednesday, December 2, 2009 11:37 AM CST

Maryah is going home today!!!!

After two full weeks in the hospital Maryah is getting out of the hospital. It's been a good fight and she is returning home and is looking forward to spending quality time with family and friends. Yet another VICTORY for the Champ!

We have a good pain management plan in place that consists of dilaudid, kedamine, and methadone. We'll stay on top of the pain so she can relax and just "be".

We want to thank those of you who helped us during our stay. You know who you are. Too many to list.

Hopefully Maryah will be up to writing an update soon. May you continue to seek, feel, and share God's love, grace, peace, comfort, and joy.

Zach/Dad/Ringman

Monday, November 30, 2009 9:37 PM CST

Good evening family,

Thought I'd update since there are hundreds of hits on Maryah's website daily and it's good to keep everyone posted with fresh info.

My mother "Nuna" is with Maryah while Rachel and I work -and she does a great job so thank you Nuna. She said the Champ had kind of a tough day physically and emotionally. Yesterday we spoke with a team of doctors and made a tentative plan at that time to begin switching her over from IV pain meds to oral; to start the same regiment here in the hospital that we will do at home...then to watch her for 48 hours to ensure pain is fully under control.

So initially we thought, if this plan worked, she'd be able to go home Tuesday (tomorrow). However, today Maryah tried to stand on her own and the pain rushed back in her hip so badly that she will probably not go home tomorrow. She is disappointed, as is Morgan (who misses Maryah greatly), but we know it's better to be here where they can manage pain quickly. As of now we have a hold on plans to return home. The last two times she was in the hospital we've ended up right back in the ER because of pain, so this time we're fine staying put until we find a plan that works.

It's not ideal to be in the hospital, though it really helps just to have this quality time together...and to "snuggums" (as she used to call it when she was a babygirl). For those of you who are reading this and may be feeling a little down in life, I STRONGLY encourage you to just hold the ones you love. If you're the one who needs to be held, like Maryah, then ask the person whom you want to hold you to do just that. Time is precious so be direct. Maryah has always taught us a lot about life...and during these times she is showing us how to be open by simply saying what is needed. When she wants to pray, we do. When she wants to cry, we do. When she wants to laugh and dream and plan and "be", we do. The Champ is focused on healing AND saying the things she needs to say...and she STILL finds the balance of this experience fulfilling.

So live life fully and deeply. Allow yourself to feel and share. Be open. And know that there is faith, hope, and love...and the greatest among these is LOVE.

We want to wish Azaria Sky a HAPPY 3rd Birthday! We love you "Boogie".
Zach/Dad/Ringman

Tuesday, November 24, 2009 8:53 PM CST

Maryah started the clinical trial about an hour ago (Friday, around 12:00)! She is receiving it right now and will be done shortly. No adverse effects as of yet. We of course will keep you posted, but I was too exctied to wait and had to share with you that the Champ is fighting the good fight right now! She will win this bout, along with the many others...and will remain undefeated!

________________________________________

Good news family! Maryah is offically eligible for the clinical trial and her spot has been reserved!!!

We had some serious concerns whether or not we could even get her into a trial - let alone choosing a trial that works - but we've gone through a lot of ups and downs, and the important part is we made it in. Facing the facts, this trial is our only 'medical' option right now, so we are relieved and VERY thankful we have this opportunity.

As you may remember, last week docs told us that chemo and radiation were no longer options, which left us with the only option of a clinical trial. A clinical trial just means the FDA hasn't yet officially approved this medication as a treatment option in the U.S. and so research is needed to see if it works, possible side effects, duration of med, etc.

Last week there were three trials to consider, though it was too early to reserve a spot. So we had a little time to contemplate about choosing the right trial, because if that one didn't work, she wouldn't be eligible for the other two and we'd be left with basically no other options. So, due to the seriousness of timing and the weight of the responsibility to choose correctly, we of course turned to God for guidance. A few days later docs informed us two of the trials were no longer options...so our faith teaches us the one trial with which we were left was God's answer.

Maryah was initially scheduled to begin this trial today. However, a few days ago we learned she couldn't begin today because we had just increased a much needed steriod to reduce inflamation to help ease immense pain in her back. We weren't sure if waiting would put her at risk of losing her spot, and also put her at risk of growing more tumors. Our only option was to focus on possibly starting a trial this Friday - the day after Thanksgiving.

THEN yesterday her blood sugar was way too high to start the trial (the mid 120's) and we were told if we couldn't get it down to 70-100 by TODAY, she couldn't begin Friday, which again would put us at risk of possibly losing our spot. But we cut off a medication - which she needed for pain control - but the cost/benefit was worth it. We just had to shift her other meds. She also didn't eat and we gave her water and plenty of fluids (saline) overnight to flush out her system. By this morning her sugar level was down to the 80's.

BUT THEN docs told us, after the good news of her blood sugar level being down, that she'd have to have a CT scan of her head - because if there was a head tumor, which she has already had a few of, it would automatically disqualify her from the trial. So Nuna advocated to the woman who took the scan who, in turn, pushed the radiologists for an immediate answer...and they all concurred the scan came back clear!

So today, with the relief of good news, Maryah can finally rest comfortably knowing she is 'cleared' for take-off. She called me while I was at work and with tears in her voice - yes, in her voice - shared the good news...and we teared up together. So, as promised, we are passing the good news onto you.

We are reminded to stay strong in faith and to thank God for everything we are going through, especially in times of challenges and extreme struggles. Because God is not good just some of the time, God good ALL of the time! We are resting now and getting geared up for literally the fight of her lifetime! Maryah is "The Champ" and we know all of you - family and friends (whom we consider family) - are the crowd cheering her on. You are all in her corner. As her Ringman I have a humbling and unique opportunity to coach "The Champ" and to watch Maryah fight from an excellent viewpoint...day-in and day- out...and she tells me how much the crowd - you - plays a part in the fight. So keep on keepin' on; keep cheering; keep praying; keep thanking; keep giving; keep receiving; keep hoping; keep faith strong; and most of all KEEP LOVING!

Despite being knocked down, knocked around, and exhausted, ya'll KNOW she is UNDEFEATED!!! The Champ fights on. She keeps getting back up through determination and grit. Ever since they were little I raised both Maryah and her "Cut-man" Morgan with the #1 rule in a seemingly dangerous situation; "never panic". As her Ringman I can tell you she is prepared. She is strong; spritually, physically, and mentally. I know and wouldn't lie to you. Look, this her fight. This is her time! So pray through this "crisis" and rest assured "Christ IS"! She is a strong, skilled, and determined fighter who is a proven veteran. Each and every one of you must stay strong, and by doing so she feels encouraged. Cast any possible doubts aside, the Champ has this one.

Much love, grace, peace, comfort, and joy to each of you...
Zach/Dad/Ringman

Monday, November 23, 2009 7:42 AM CST

Good Morning,

Thanks to Zach for the last entry. It was touching and helpful to hold that visual of our girl.

It's been a busy week since Wednesday trying to get pain under control and get Maryah feeling better.

Today is Morgan's NINTH birthday and it's amazing to watch her get so big, so fast. We are grateful for her graciousness after so many years of living with this disease and for how much it has impacted her world. She has learned much from Maryah including her great strength.

In working with the six docs Zach mentions in last week's entry we began to hit Maryah with lots of different meds that we thought would help with pain relief. This included an increase of steroid. Well, Friday I received a call from her primary Oncologist, Dr. Weigel to discuss the fact that the increase in that dose made her ineligible to begin the clinical trial until Friday. We had scheduled her to begin tomorrow, however now we will need to wait. She must be on a steady or decreasing dose of that particular drug for one full week prior to the beginning of the trial.

I guess we could have gotten mad, yelled and been upset over it but as I have always tried to remind myself throughout my life...everything, absolutely everything happens for a reason. Although sometimes we don't understand the reason there is great faith that God is leading our journey daily.

Since then we have tried a range of different pain medications and dosages (none of which affect the trial) to get pain control. Some things have worked well and other things have not. Right now Maryah is able to rest comfortably with the help of the medications and she is in good spirits when awake.

Yesterday she was up and around and showering, reading magazines and putting on make-up (always a good sign).

Today Maryah has made the decision to allow her nurse to insert an NG tube through her nose to her stomach. She has a HUGE air pocket in her tummy that is causing her a great deal of discomfort. We are unsure how it got there to begin with but the air needs to be released. She is aware it will not be comfortable to do this but it shouldn't take more than a few hours of having the tube in to release the air. She shows great persistence and bravery in making these decisions for herself. We are ever proud of her ability to think logically and determine what things are best for her well being.

On the current regimen of medications she is on, it is not likely we will get home until we can lessen the amounts and frequency. Even if Zach and I were super human it would be round the clock care we couldn't possibly keep up with.

Although we don't wish to spend a holiday in the hospital, it will not be our first Thanksgiving inpatient and we STILL have SO much to be thankful for!

We will update you after we begin the trial and until then we ask that you pray for minimal side effects and MAXIMUM benefit for Maryah at the very start of and throughout the trial.

We are thankful for each of you, for your prayers, your good thoughts, your support and love for our family, for Maryah. We are thankful this week especially as we remember our many blessings.

Happy Thanksgiving! We will be back to update again soon.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, November 19, 2009 11:28 AM CST

Please excuse any errors in this message. We're all tired. Last night Maryah had pain in her left arm - which is new pain this time around - as well as pain in her back, hip, and left leg...so much pain that she had to go to the ER where they admitted her to get on top of the pain.

We just met with six doctors - including her primary doctor, Dr. Weigel - and we've decided we'll try methadone, on top of the dilaudid and kedamine (sp?) to knock out this pain. Maryah is having an xray soon just in case she injured her arm somehow. She is reporting the all-too-familiar tumor pain in her arm. This is the cause of most of her pain right now. Remember, Maryah has not had anything to fight off cancer in over two weeks so it could be popping up in other places.

So here is the short and skinny of where we are:

Maryah has spots up and down her spine, on three ribs, both hips, and left leg. Chemo and radiation are out. Chemo is no longer an option because Maryah was already on chemo when these spots occured. Plus, she has already had so much chemo - over 70 total rounds - she cannot keep having more. Radiation is no longer an option because there are so many spots. So now we're getting her into a clinical trial, which she'll begin Tuesday. We sort of feel like we're racing the clock by getting to this clinical trial before more tumors are able to show up. This clinical trial has shown very positive results.

Initially, Dr. Weigel said we'd choose one of three clinical trials and that we'd have to choose wisely because if we chose one that did not work Maryah would not be eligible for the other two. This clinical trial is sort of our last medical option. We've been praying for help choosing which trial - because that is a lot of responsibility to shoulder - and today Dr. Weigel said only one clinical trial is open. So there is our answer from the Big Guy upstairs! Thank you God!

Maryah just had all of her pain meds and is resting comfortably...which is why I'm writing this now. Just before she dozed off she asked me to hold her hand...and for us to pray. I asked her who she wanted to pray and without hesitation SHE began to pray aloud. Family, when times get hard, find a quiet place, and get this image into your hearts and minds. Envision Maryah and hold her hand. And hear her voice quietly asking God to help her get through this pain and through these tough times. When she was done she quietly drifted off to sleep.

We'll keep you updated as we know more. I'll share part of our family prayer with you that Maryah enjoys..."We pray for those of us who are suffering; that we continue to seek, feel, and share God's love, grace, peace, comfort, and joy". As always, "pray hard, walk tall, do right".

Zach/Dad/Ringman

Monday, November 16, 2009 4:45 PM CST

Good Evening,

We met with Dr. Weigel today to discuss a treatment plan for Maryah.

Over the weekend Maryah made a trip to the ER because the pain she has been experiencing is excruciating and kept her from walking without assistance from her Dad. They were able to give her a new med she hasn't had yet that is apparently a WONDER drug. She is getting this new med IV four times per day and it helps her get around and feel well enough to participate with most things day-to-day! It's really quite incredible.

During the ER visit Dr. Weigel shared with us that Maryah has tumors (or spots that we assume are tumor) in more places than just ribs and vertebrae. There are some in the lower vertebrae as well as the upper vertebrae near her neck, some in her left ribs, left leg and both hips. This is likely where all the pain is originating.

As of right now it seems that our traditional options (chemo/radiation) are not working the way we would like them to. So...we are turning to clinical trials. There are several available with the use of IGF-Antibodies. These are promising trials and we are praying they will bring positive results!

We will continue the pain meds to help Maryah through the trying times in the beginning here.

We will have to wait until next week (when Maryah is three weeks out from any chemo treatment) to begin a trial. We will meet with Dr. Weigel again next Monday to see which of the three trials has an opening and then begin the enrollment process. We will likely start the actual treatment Monday after Thanksgiving.

We will keep you updated as best as we can during this time. Thank you for all of your continued prayers and support. We will need it in the coming months. We are praying as a family that this trial is the miracle we are waiting for.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, November 10, 2009 8:42 AM CST

Good Morning,

Maryah made it home yesterday afternoon! She had a PET/CT early in the day and then after organizing meds for home and receiving a final once over from the Docs we were out of there.

We will meet with Dr. Weigel next Monday to discuss how we'll fight off the three tumors on her ribs and on her vertebrae. Dr. Weigel will have ample time to go over the PET/CT results and determine treatment options. Right now we're likely looking at radiation and hopefully a clinical trial or new and improved chemo treatments. Until then Maryah can relax.

It is difficult to wait for answers from doctors, though we look to God for comfort. We will get a plan in place and work through it soon.

We'll keep you updated as we know more. For now we just ask for prayers for her to stay healthy and HOME for a while!

Thank you to Megan, Amy "Bomb", Grandma Sue, and the Wyckoff's for food at the hospital!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, November 8, 2009 11:26 AM CST

Good Morning,

Today Maryah is feeling a little better. We talked with Doctors this morning and they have confirmed through a culture that Maryah did NOT have shingles but rather another form of cold sore. Thankfully the medicine they gave her still helps that heal up quickly so as not to be contagious. This means she can get out of her room and go outside a bit! She took a short trip outside with Auntie Jo and Dad last evening and we will go out some more today too. It's beautiful outside, wouldn't want to miss it!

Maryah is pretty nauseated today so we are working on getting that under control. We will work on getting pain meds turned over from IV to oral and make sure all of her medications she will need are being given orally too. This means....she can come home soon!

After they have monitored her oral pain meds for 24 hours they will likely be able to discharge her home. She will have to have her PET/CT tomorrow to help them develop our treatment plan for the recurrence but then she should be able to head out!

This is all good news and Maryah is happy but she wants to be sure she will stay home this time so we are making sure all of our ducks are in a row first.

I am grateful! This has been a long stay. If all goes well it will end at 9 days. Keep praying for our girl that she will be much less nauseated, pain under control and feeling up to going home!

Thank you for food, snax, comforting words, prayers and love.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, November 6, 2009 12:59 AM CST

Good Afternoon,

Finally another update. Yesterday and this morning threw us for a bit of a loop with some unanswered questions and unpredictable symptoms. Today we have more answers...

Today we know that Maryah has shingles and they are treating her with an anti-viral medication. I would not suggest visiting if you have never had the chicken pox. Any visits now must be short and you would not be allowed to touch, kiss, hug Maryah. Using standard precautions is a good thing in this case.

We also know through a bone scan done yesterday that Maryah has another recurrence of Ewings. The lesions are being seen on three of her ribs (one on each of the three ribs) and one possible lesion on her vertebrae. This is not good news but we are feeling somewhat relieved (if that makes any sense) to have some answers.

Today the Docs will begin staging Maryah again. They will do a brain MRI (also looking for any inflammation that could be caused by the Shingles virus) and a spinal MRI. They will look into doing a bone marrow biopsy next week. After these tests are done we will consider our treatment options and make a decision. Clearly we have stopped the chemo she has been getting because it wasn't working to prevent the tumors. We know that radiation works well for Maryah and we also know there are clinical trials that may be available now. We are still NOT out of options.

We know how to fight this beast, we know how to handle the shock, we know how to plan day-to-day with this but none-the-less we are all still very saddened by the news and of course we are frightened. This is disheartening to say the least. We are a strong bunch, Maryah is a strong girl but we are at our weakest when these huge blows come and knock the wind right out of us. We find strength as we go and motivation in many things including the love and support we receive from our friends and family.

Thank you for checking in today. Now that we know what is going on we will likely not update until early next week when we know more about staging and treatment. Unless something changes that we feel we would need to share.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, November 5, 2009 10:04 AM CST

Good Morning,

I will likely update a couple of times a day if there is new information but for now just once per day.

I appreciate being able to come here and give complete information so as to avoid taking up my time that could be spent with Maryah making/taking phone calls. Forgive me if you have called and I haven't called back, forgive me if I seem to have fallen off the face of the earth. My priorities through this are GOD first and foremost and Maryah and of course the rest of the kids and Dan and then work, which cannot be let go too long as well. So there is a lot on our plates each day. Please hang in there with us and remember to look here for information. We will post whenever there is something significant to share.

The preliminary results from yesterday's spinal tap were negative for bacteria. Bacterial meningitis should surely be ruled out as long as the cultures don't grow anything. They are testing the fluid for viral meningitis as well as MANY other things that could be causing infection, fever, pain, etc and those tests will take much longer to get results. Some will be back in 48 hours and other will take up to four days.

There is no plan to discharge Maryah at this point. It makes more sense to keep her inpatient with resources at hand until we can get some answers.

Someone asked today if they could come to the hospital and sit with her so Elaine, Zach and I could get a break. The only problem there is that the three of us spend every waking minute with her and then some. We have the answers the Doctors need when they come in to round with Maryah throughout the day. The only time Doctors are not coming in is overnight. Although it is appreciated and certainly would be nice, we sort of look at ourselves as her three man/woman nursing team. We each take shifts, some are shorter and some are much longer but we report off at the end of our shift, we each know the complete picture that the others have gotten during their shift and therefore anyone of us can interchange and take over when the need arises. There is six years of history with this disease to be recalled and so we act as her three walking medical charts. So...thank you for that offer, some days we wish that it was possible but for now, during a critical time of finding answers it is not.

What you CAN do...if you have time to bring healthy, small meals/snax (Zach and Maryah always appreciate sweets) in throw away containers for the caregivers "on duty" that saves us time away from the room as well as the outrageous amount of money it costs to visit the hospital cafeteria. Beyond that, there isn't much healthy and yummy offered there! :) Maryah still likes to have a SHORT visit from friends and family. She is tired often and sleeps mostly but she knows you are there and is happy you have come! I will ask however that if you have even the slightest hint of a cold, sniffles, possible exposure to H1N1, any germs that we may not want shared...please don't visit. We love you, we just don't love your germs. :)

We also have other kids to think of. Their activities and needs are equally as important so offering rides or time with them is a huge help. We don't like to shuffel them around too much, their routine and structure is extremely important to us but sometimes even just a short play date or trip out for coffee or cocoa is fun! They have dance classes that sometimes they need transportation too and from. These simple tasks can become difficult when we are spending a lot of time running back and forth from the hospital. I am looking for a massage therapist who will donate a short bit of time to come to the hospital and offer Maryah a massage as well as us as caregivers. It gets hard to sit in those hospital beds/chairs for hours at a time. Magazines, a good book you've read and want to borrow out, I asked my sister for her crocheting bag, etc...all good things to help keep us busy during quiet times.

It is VERY difficult to ask for things/help when the chips are down. When friends/family are asking what they can do and want to help I know that I need to ask anyway. So for those of you that find that you have the time and energy and want to help, the above are ideas.

We are determined to push for answers, good answers and good/effective treatment and we are working very hard each day to get Maryah exactly what she needs. The hardest piece of this past few months is just not having any good answers. Whenever we think we find one, we find we haven't dug deep enough. It's tiring. We find motivation in each moment that Maryah feels good and has good days! We will continue to fight along with her!

Thank you to all of you who are out there praying, supporting and loving our family. We couldn't fight this battle without you.

Much love and many blessings,
Rachel/Mama
"Ma Perez"

Wednesday, November 4, 2009 2:18 PM CST

Good Afternoon,

Maryah is resting comfortably with the magic of good medicine. It has been a long day already, Maryah began to experience some severe neck pain earlier today, she has continued to spike high temperatures. There was a concern with the Docs that we should look at the spinal fluid for a variety of things but primarily spinal meningitis. This is a very difficult piece of information but we are hoping that we get good news and they are still able to find answers.

Maryah is in quite a bit of pain and is in need of lots of prayers. The Doctors have a lot of ideas and are working on treatment and different antibiotics that should cover a wide range of problems.

Again, there was a steady stream of Doctors in and out all day and all ask A LOT of questions. It gets overwhelming and tiring for all of us.

At this point no final results are expected from the tap for three to four days. Maryah will remain inpatient until they are able to find some answers. I am glad she is here, her pain is being controlled, she is being closely monitored and we are able to have immediate access to the resources we need to figure out the problem at hand and fix it!

We will keep you updated as things move along. Thank you for your support. We are all in need of all the support we can get right now.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Wednesday, November 4, 2009 7:40 AM CST

Good Morning,

It has been a very long night for Maryah. She is in the hospital again (or still) today. She was discharged yesterday at 4:30 and was admitted again last night through the ER after having spiked another high temp. She continues to spike high temps today and we are working with the team of Docs to determine what is going on. Right now all is a mystery. It's all a bit disheartening and we are all a little nervous about what could be wrong. It's difficult to not have answers. We do know that she has sinusitis and that explained some symptoms, what we can't explain is continued fevers even after getting two different antibiotics. That's the mystery. We will try a new antibiotic today.

I need to ask for your concentrated prayers for Maryah and a complete recovery so she can rest, have peace and come home to be with her family.

I will keep updated as I know more throughout the day or tomorrow.

Thank you for your continued love and support.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, November 1, 2009 7:32 PM CST

Good Evening,

Just a quick update to let you know that Maryah is inpatient at the U of M again. She went in to the ER today for a high fever. She has also been experiencing headache pain again. She is being treated with Tamiflu for the 2nd time now, to hopefully prevent H1N1 after an exposure last week. We are praying that she avoids the dangers of H1N1.
Tomorrow the docs have ordered some scans of her head and neck to try and determine where the headache pain is originating. Hopefully we can get some good answers.

This past week we have decided to do four more rounds of chemotherapy for Maryah. She has had four thus far and this will take her treatment into mid-January. Our hope in doing another four rounds is to give her a long break to rejuvenate and rest her body! She really needs a break to recoup.

This past week also brought good/fun news for our family, we are expecting another baby BOY in March! We all thought the baby was going to be a girl but as we all sat patiently and watched the ultrasound the girls were hooting and hollering when the tech told us it was another boy. Nick doesn't quite understand yet but I'm sure he will later on when he has a buddy (that isn't a sister) to play with. We are all very happy and feel very blessed.

Overall it's been a rough week but we are always keeping things in perspective that life can always be worse and for some it is, so we will just keep smiling and finding a way to live our best lives throughout all else that goes on!

Offering up prayers this week for those that need them: Dan, Ruth, Jill and family, Littler family, Grandma Teri, the Dunlap family and all others that are suffering or struggling in any way. We continue to pray for a cloak of cover from H1N1 in our family!

Thank you for praying with us and for us. We are forever grateful as it is the best gift you can give.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, November 1, 2009 10:57 AM CST

This week Maryah was in the ER twice and she was just admitted into the hospital with an excruciating headache, neck pain, and a fever. They're giving her an antibiotic and some pain meds.

We have great doctors and yet one lesson we've learned is sometimes we have to grab the bull by the horns and make things happen by utilizing common sense.

The last time she got cancer she had an unexplained fever and many scans, but scans kept showing no signs of tumors...but after a biopsy results showed there was indeed cancer. In an effort to share - not scare - we are doing scans on her neck to see if that area is the cause of headaches and fever. Maryah is soooo tired of being in pain and we're tired of not knowing the source of much of the pain.

Rachel called and spoke with the docs and got them to see the need to do scans on her neck so in a little while they will visit with her and will make a plan.

That's it for now. We'll keep you updated. Thank you to Mike (aka Chief) and Dene who had Morgan last night while we were in the ER.

Dad/Zach/Ringman

Monday, October 19, 2009 3:18 PM CDT

Good Afternoon,

Although I hate to update over Maryah's updates I thought I better get some information out since there are folks wondering what has been going on.

We got the "all clear" on scans on Monday, October 12th. Later that evening at dance Maryah had complained to her Dad and I that her headache (one she had been having on and off for over a week) was "really bad". She even opted to sit in the car rather than watch the younger girls dance. That was not like Maryah so needless to say there was some worry. When Maryah and Dad left the dance studio Maryah was complaining of her pain being at a "9". Since she hasn't had anything over a 7 except after they removed her femur we were obviously worried enough to bring her to the ER. She was admitted that night to the U of M for pain control.
Maryah ended up staying at the "hotel" until Thursday afternoon. They were able to control the pain with some medications. There was no concern of tumor after the brain MRI and head CT. That was good news of course! The Docs ended up treating her for a migraine. We are still unsure as to what caused it since she's never had one before but we are looking into preventing it from happening in the future.
Overall it was a long, rough week but Maryah has since been discharged, gone home to Dad's, had some fun with friends and is back to school today!
We will be off to dance again tonight and hopefully we have a better evening in store with no trips to the ER!

Maryah is in her 2nd week of round 4 of chemo. Hoping and praying her nausea will be limited and she can enjoy her week.

Friday, Maryah and Morgan and I will be spending the afternoon at Nuna's where we will have the opportunity to meet Melissa Gilbert from "Little House on the Prairie". Being that this was one of my favorite childhood TV programs I am very excited. Ms. Gilbert is in town performing in the Little House musical being held at the Ordway. Morgan and Nuna were planning to go to the show on Sunday anyway so it will be a nice opportunity for Morgan to meet her before the show. Maryah is pretty excited for the whole event also.

Please say prayers for Maryah to maintain good health. In our house we are praying for a cloak of cover from H1N1 and we are praying for our friends and family that are ill, recovering or have recently passed.

We would like to request extra prayers for our special friend, Ruth Gregory who was recently diagnosed with lung cancer. She could use as many prayers as possible. She has been a wonderful friend to our family and an amazing support to Maryah over the years.

We hope you are having a beautiful fall and that this update finds you well!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, October 11, 2009 10:58 AM CDT

ALL CLEAR!!! Scans look good! Thank GOD!
_____________________________________
Hey everyone!!!

Maryah here! I had a free minute here to sit down and update so I thought I would!
The last couple of weeks have been extremely busy for me and my family so I'm sorry I haven’t been able to update! I have been sick with a bad cold and fever for a while and am just now starting to recover a little bit. I missed a couple weeks of school due to being sick and was very nervous to return back on Monday thinking I would have two weeks of homework to make up but my teachers and very helpful and just gave me the big stuff to make up which thankfully only took me one night to complete everything!
This week has been a GREAT off week of chemo. Although I hate going through chemo I know that it is helping me to heal but I do look forward to these off weeks to spend time with family and friends!
Wed night I went to So You Think You Can Dance at the Target Center with my little sis Morgan. We had a blast! Tonight I am going back to the Target Center to attend the Taylor Swift concert (my favorite country singer/song writer) with my good friend Allie! I'm really looking forward to it!
I hope you all are enjoying your weekend and have a blessed up coming week! Thank you for continuing to check in! All my love!

~Maryah/ The Champ (:

Sunday, October 4, 2009 10:34 AM CDT

Good Morning,

It is a lovely fall morning. I am glad the rain has stopped for now. The cool, crisp air is familiar and it reminds me of so many good memories. This is our favorite time of year.

We are looking forward to upcoming trips to the Apple Orchard/Pumpkin Patch where we were married just over a year ago and spending the day collecting goodies and pumpkings to carve!

We have celebrated homecoming, and now look forward to birthdays and an upcoming appointment where we will all go along to find out the sex of our new baby due to arrive in March.

So many fun things going on and so many fun things yet to come!

Maryah has just finished her third round of chemo. We tried an IV version of the oral drug she's been taking to see if it would relieve any of the nausea she's been experiencing. Unfortunately it did not really improve. We will decide this week if we will continue with IV treatments or go back to the chemo/cranberry cocktail.

Maryah is scheduled for and MRI and PET/CT on Friday, October 9th. We will then visit with Dr. Weigel on the morning of the 12th for her results. We are praying that all scans are clear and the chemo is doing it's job. I expect after the scan results that we will determine if she will continue chemo for a few more rounds or stop now. Preferably we think it might be a good idea to go a few more rounds with this and make sure we knock it out for awhile. In theory this is how it's worked in the past but we are always in new and uncharted territory with this darn disease. It makes for very uneasy feelings!

Maryah has missed school these past two weeks unfortunately. The first week due to having a nasty cold which we ended up testing for H1N1 twice at ER visits. We can never be too sure and as dangerous as H1N1 can be for her we were perfectly comfortable heading in for swabs. All tests negative it turned out our family caught a seasonal cold and we are all starting to be on the upward mend. Morgan seems to be the last one and she's feeling a bit better now also.
The second week of missed school was due to the fact that many, many kids at CDH were out of school either with flu-like symptoms or the actual flu (H1N1 or not is to be determined). Maryah plans to return to school tomorrow and hopefully we can keep her influenza free.

She did manage to make it to the homecoming game and dance last weekend however and enjoyed herself very much. We were in a waiting game to determine if she would be fever free for 24 hours prior to the game. If not she wouldn't be able to go...well, I think she willed herself well! :)

This week she will attend So You Think You Can Dance with sister, Morgan and her crew from DDs Dance Studio on Wednesday and then the Taylor Swift concert on Sunday! Big week ahead!

So, that is the update for now. I will get back on and update after we receive scan results and have a plan in place.

I hope that all of you are enjoying this beautiful fall and preparing for the upcoming winter, it will be here all too fast I'm afraid!

Thank you for your continued love and support. We are so very fortunate to have so many people surrounding us throughout this battle. As much as we might wish for a "normal" life without cancer it is such a blessing to know true friends and true compassion.

We are grateful!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Wednesday, September 9, 2009 4:59 PM CDT

Good Afternoon,

I just realized it's been a long time since Maryah updated, or what seems a long time anyway! Maryah started her Sophomore year at CDH on 8/31 and has been enjoying being back to school. She is busy with school work, catching up with friends and unfortunately chemotherapy as well.

Maryah is currently in the middle of round #2 with about 4 rounds left to go. I expect we will scan her again near Christmas time and see where things are at that time.

Right now things feel pretty "normal" despite nausea and some other annoying side effects. Life is busy as always but such a pleasant harmony of kids all being back in school and talking about their daily experiences, the starting up of a new dance season, participation in new sports and groups. It's all really quite fun and the organized chaos of our life is really like the beautiful harmonization of a sweet tune. It's what I've always wanted in life; a big family. Maryah, being the oldest in both my family and Zach's, sometimes sits back and looks at it all wondering how it all came to be and wondering how she went from one sibling to many! When we talk about it though she is happy and has a wonderful perspective. The support she receives from all her siblings who love her and teach her little life lessons, as well as just how much she loves each of them, and sets the example for them, is really a lovely piece of life to experience.

Zach and I regularly discuss how even after a divorce we just built a bigger family and have expanded that family to include many now. It's really fortunate that we are so blessed to still be such dear friends.

Life is truly a blessing and we are all so fortunate to be here and even through the tough days we are blessed to be together and living life...whatever it may bring.

Thanks for following and continuing to check in. We hope that everyone is enjoying the close of summer and getting prepared for the fall days that await us.

We always appreciate the continued prayers and support. They do help!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, August 22, 2009 4:06 PM CDT

Hey Everybody!

Maryah here! Ah, it's been sooo long since I have updated! Sorry about that! Between my busy summer and then all of this crazy hospital stuff I have had zero time to even check emails. But I have just spent about an hour here on Caringbridge reading all of the great notes you all are leaving me and I really want to say thank you for all of the prayers. They sure are helping. I have come a long way since being home and out of the hospital. I am now up and moving...back to doing dishes this week at dad's house(; Tonight I am evening hoping to make dinner which I love doing before I sit down for my chemo/cranberry cocktail...as my mama would call it.

I am going to go and enjoy the BEAUTIFUL day outside, as I hope you all are doing as well. I'm soo happy the rainy days have passed! Have an amazing weekend and thanks again for all of the prayers!

All my love,
Maryah/ THE CHAMP!!!

Monday, August 17, 2009 1:25 PM CDT

Good Afternoon,

Maryah was able to be at home all weekend and enjoy some time with family. The unfortunate downside was that she was extremely nauseated and unable to keep anything down or move around a whole lot.

So that meant lots of movies, hanging together in the living room laughing and teasing! That was fun though!

She was finally able to keep down 1/2 a PB&J last night along with some Sprite and a chocolate chip cookie. That helped a little!

Poor kiddo went to the doc this morning and got some fluids to avoid dehydration. She will likely get set up at home with some IV fluids and meds to help with this issue. Pain is under control now and chemo is underway.

We will continue to work on the nausea so she is up to par to begin her Sophmore year at CDH in a couple weeks.

Please pray for relief of nause for our girl. We will keep you updated!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, August 15, 2009 10:39 AM CDT

Good Morning!

We're home! Maryah had a good first day/night home. We sat poolside and had a nice dinner together. The kids swam and played all evening together.

Today and tomorrow Maryah gets a short break from chemo meds and then back to it on Monday!

In just a short while after finishing some yard work and chores we'll be running out to get school supplies. Time to get prepared for the upcoming school year since it is very quickly approaching.

Hopefully it will be a peaceful and relaxing day together! I am sure there is more swimming in the immediate future. Tonight we will grill and enjoy more family time. It's so nice and I still never really realize just how much I take that time together for granted!

Thank you for continuing to check in on us. We will update this week again.

Maryah will be in radiation therapy for a couple more weeks and chemo until at least January to help combat these nasty recurring tumors. Praying for an easy run without any complications or set backs.

Have a wonderful weekend and enjoy time with your own families and friends!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, August 13, 2009 8:36 PM CDT

Good Evening,

It has been a long week for all of us. Between work, hospital, making sure all kids are getting everything they need, it's been crazy.

Tonight we put up Maryah's Friday goals (a routine we have had this week). The #1 goal - GO HOME!

We are expecting discharge tomorrow afternoon provided all goes well between now and then.

Maryah is drinking her chemo/cranberry cocktail as I type and I am still at such a loss when watching her do this. It brings such pain. chemo is such a love/hate relationship! UGH!

I am grateful for the prospect of bringing Ry home to her own bed tomorrow. I am grateful for the outpouring of support from friends this week. It's been so helpful.

I hope tomorrow to update again from home.

Thank you all as always for all you do for our family!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, August 11, 2009 9:34 PM CDT

It is pure hell to watch your child, no matter how strong they may be, drink poison.

That's all. Goodnight.

Sunday, August 9, 2009 5:08 PM CDT

Good Evening,

Unfortunately Maryah was in fact admitted to the U of M yesterday afternoon. She had spiked a high fever and was in extreme amounts of pain.

After being admitted they have been able to better control the pain and do some blood cultures around the spiking temperatures.

She was able to have radiation today which normally only happens during the week days. Hopefully that will start to help alleviate some of the pain issues.

After talking with Maryah's Doctor, Brenda Weigel today we were able to determine that this is really where Maryah needs to be until we can get a consultation from the pain team on how to best ease her pain at home, figure out the source of the fevers and possibly begin her chemo regimen here while inpatient. This plan all makes sense and although we never want to stay inpatient we all agree, even Maryah that it is better to be here and be on top of her symptoms.

This morning Maryah's nurse Corrie (great lady) helped get her moved to one of the fancy "Adopt-a-room"s here on 5B. It's a much larger room with different calming lights, large flat screen TV, etc. It is really self contained in that there is a fridge, freezer, microwave and coffee pot as well as the computer I am typing on. It's a much more calming and peaceful environment than the 8x8 room we were in last go 'round! I guess if she has to be here this is a good room to be in.

We have no idea right now how long this visit will last, only that it won't just be a night or two. We really need to figure out these fevers and treat them appropriately.

There is much to be determined but overall Maryah is better today than yesterday. She anticipates writing her own journal entry later tonight so keep your eyes peeled.

We will update you any time we receive new information. Hopefully Maryah can update you herself!

Thank you for continued prayers and support.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, August 8, 2009 1:58 PM CDT

Good Afternoon,

Just got a call from Zach that Maryah is on her way back to the U of M Emergency room. Likely they will admit her into the hospital again.

She is experiencing horrible pain and spasms in her back, she has a high fever and her heart is racing. Not sure what all of that means but do know that she needs some attention.

I will work to keep you posted as I know more throughout the day.

Wishing some days were easier and maybe we could find a little bit of a break somewhere.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, August 7, 2009 8:38 AM CDT

Good Morning,

Maryah has had a week with undivided attention from Dad! How nice. As Zach is transitioning into a wonderful new job he has been blessed to spend the whole week with Maryah. This was particularly good timing since Maryah has been feeling less than wonderful. The pain is still there, the nausea is not controlled and she has not really been able to eat at all!

Yesterday Zach brought Maryah to the U of M for fluid hydration, blood transfusion, IV nausea and pain meds. All of which was helpful.

Today is Relay For Life- South St. Paul. Maryah and her team the DDs Dancing Frogs will be there with bells on (even with the rainy weather) and walking to support a cure for cancer! Maryah will be walking the survivor lap just as she planned. Although she may not be able to stay the night and walk the track all night she is still planning on going, supporting and making her important lap! I will be there with video camera! Thanks to many Maryah has reached her fundraising goal for this walk and is proud to Support this very worthy cause.

Maryah went through radiation simulation on Tuesday and began radiation treatments yesterday. This is an important first step. Historically Maryah gets very quick relief from her tumor pain when she receives radiation. I would expect by mid-next week she will be getting some relief. Also, we have agreed we will begin chemo therapy using the drugs we know have been successful in the past rounds. We expect to work at it a little longer this time, maybe six rounds instead of just two. The hope is she can have a longer period of rest without recurrence with more chemo at the onset.

We are happy with the U of M and thier decisions and plans. They work with us and consider our input at every step. My greatest hope after putting this plan in place is that Maryah can get into a routine that her body is comfortable with so she can feel well most of the time, attend school, hang out with friends and not be in the position she is this week.

Thanks for continued prayers and support for Maryah and our family. Zach, Dan and I are forever grateful for the many, many people who spend their time and energy not only praying but preparing food, helping with the other children, checking in on us, walking with us closely each day. It's a humbling experience and we are so blessed by each of you.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, August 4, 2009 1:30 PM CDT

Good Afternoon,

Just got off of the phone with Dr. Weigel who confirmed that the biopsy results are showing confirmed tumor. It's unfortunate but it is what it is. It is certainly not the news we wanted to hear quite honestly and were praying for something flukey and different. I think we all knew in our heart of hearts that this is what we were dealing with though.

Maryah is on her way over to the U of M with Zach for radiation simulation. Radiation is the first piece of our plan we have put in place. We know it has been successful in reducing tumor size and pain for Maryah in the past. We will then begin discussing chemo vs. clinical trials.
If the U of M is nothing else...it is effecient. They have appointments scheduled, people calling, getting us answers, making themselves available to us. It's all very helpful when we get ready to fight to have our resources in play already!

Maryah is sad today. She is having a hard time (as we all are) swallowing this news of yet another recurrence. That does not mean she is giving up. She has no intention of letting cancer win now! As one of her proud "team members" We have no intention of letting her fight alone either. We will be in her corner fighting along side her. Dad is her ringman, I am her coach and Dan is her funny man!

There are always going to be things that will bring us down in life but when we rise again and stand tall and say "NO" we refuse to let those things take over our lives of happiness, love, caring and kindness. We have no intention nor does Maryah of letting anything get us down. We will be jumping back up with a spring in our step and asking "What's next?"

On a side note, we have exciting news yet again in the Perez household. We are expecting a new bundle of joy in early March. Totally unexpected and unplanned but a blessing none-the-less. We certainly like to keep things from getting boring! The girls are all very excited and Nick doesn't really get it yet but he will as he gets a new little playmate. So...bringing our total to six kids in the family...Dan and I are happy to bring you this news. Maryah has been excited about this news and has been planning and plotting all during her hospital stay. She has wanted me to share the news so now is the time for both sad news and joy filled news!

We will keep you updated as we continue to put a plan in place and we ask that you maintain your posts in prayer and pray specifically for Maryah's strength, resiliance and happy moments to overcome the struggles. We continue to pray in thanksgiving for all of you who are following, supporting and caring for our family! Zachary, Dan and I are forever grateful.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Saturday, August 1, 2009 1:31 PM CDT

Hi! It's Monday and there were no results from the biopsy as expected today. They aren't quite done processing the bone sample. I expect to hear from Dr. Weigel tomorrow on the phone. Everything else is well for now. Trying to wean off some meds so maybe we can ease up the nausea!

Thanks for checking in. Sorry it took me so long. I'm crazy at work trying to get caught up from last week!

Love and Blessings,
Rachel/Mama
"Ma Perez"
_______________________________________

Good Afternoon,

Well we are home and settled in now. Just in time for afternoon meds and a nap for our girl. She looks pretty worn out from the trip home so a nap is definately in order!

I am so glad to have her home and be back to "normal" or whatever you call it! It's still always good to be home!

We will go in on Monday morning to visit with Dr. Weigel and review the biopsy results. Maryah had a fever in the middle of the night and the docs almost changed their mind about her coming home but we convinced them that we have handled much worse at home and we could handle this too!

We are comfy now and hoping to get some rest. I am going to make some lunch now and will keep you updated after our Monday appt.

Hope you are all enjoying your weekend!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, July 31, 2009 7:39 AM CDT

Good Morning,

Just a quick update before I have to get out the door this morning.

Maryah is now scheduled for her biopsy today at 11:00 a.m. They are running a lot of other tests for viral and other stuff to determine where the fever is still coming from.

I am still working diligently to get her home ASAP. She has still got considerable pain however that is something we can manage at home. Everyone feels better at home!

I will update again today or early tomorrow once I hear the biopsy results.

Thank you for your support and prayers!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, July 28, 2009 3:44 PM CDT

Good Afternoon,

By now most of you have read yesterday's journal entry and if not, you may want to get caught up!

Today, I have been thinking alot about being positive, hopeful, faithful and overall the circumstances of life.

I found a quote that really hit home for me:

"Having a positive attitude is not about ignoring the negative and pretending things are perfect when they are not. Being positive is about your approach to life."

At no point in this war Maryah is fighting has she ever approached life with anything more than pure gusto! She has had moments of sadness in the not so perfect moments, she has cried out in fear and in pain as have the rest of us but she has taken the approach that nothing is bad enough to make her quit. Nothing is bad enough to make her quit her positive approach on life!

There have been many circumstances throughout my life and the lives of those close to me that were far less than perfect. Loss of parents too soon, loss of children, loss of marriage, loss of health, loss of all things normal. The amount of suffering I have experienced both myself and for those around me who have suffered is immense.

It is in these times that I have realized that our approach to life after the unthinkable slaps us right across the face is what makes it all feel better! If we all sat down and gave up there would be no hope and hope is really the foundation of every struggle. It's what brings us through to the positive!

In turn when that positive approach to life is there I find that it is a shorter time, an easier road to make it through to the side of more "perfect" things.

When life hands you lemons...make lemonade right? Easier said than done some days but I do believe this quote in full. I do believe that how we deal with our circumstances, how we find a smile amidst the tears, how we support those that struggle no matter how small or large that struggle maybe helps us to support our own positive attitude.

Maryah has the most positive approach to life in all it's imperfection that I have ever witnessed. For that I am blessed! I have learned from my ever so young daughter how to live and approach life with GUSTO! I intend to take that lesson and share it for the rest of my days.

This week is far from perfect, it brings more speed bumps, more heartache and more trials than any of us should ever be able to handle...I expect to change my approach this week and jump at the chance to help Maryah fight this battle in her journey to win this war!

I hope that whatever your struggle this day that you can find a positive approach, live with GUSTO and hope like crazy, knowing that there are more positive things to come after the clouds part for you.

I am off to make sloppy joes now! Time to get dinner ready for my brew so I can get down to the hospital...Maryah will be happy for her sloppy joes since they are her favorite! This will be one positive in an otherwise crappy day! So...I'm off...I have hope and smiles to bring!

Love and Blessings,
Rachel/Mama

Monday, July 27, 2009 4:47 PM CDT

Good Evening,

Just a quick update before I leave to get down to the hospital for the night.

Maryah had a bone scan today and it turns out there is some inflamation of the right hip that they need to biopsy.

They think that it could be a recurrence of Ewings. I guess it is a blessing that she is at the hospital, we are finding this quickly, diagnosing it quickly and getting a plan in place quickly if needed.

I expect the biopsy to be within the next two to three days. They are not able to schedule it immediately because it's a highly technical biopsy that they will complete using a CT machine. They need to get to the lining of the bone.

Maryah is very sad, having a hard time understanding all of this, as are we. It's not really fair and although no one ever promised us fair I surely wish that a fair turn of good health would come around for my baby.

We will keep you updated as we learn more.

Thank you for your continued strength and support. We are grateful for the many prayers, thoughts and positive vibes coming Maryah's way.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, July 27, 2009 8:31 AM CDT

Good Morning,

Well, we are at Monday and Maryah is still in the hospital. She continues to spike temps over 102 and that is not a great sign for getting released.
Thus far, all cultures are coming back negative which leaves us with a bit of a question mark hanging over our heads.

This morning Maryah will have a bone scan to look at her hip. She is still having considerable pain in her hip and some in her back. We are really unsure what is causing the pain. Unfortunately the pain seems to get worse with rising fevers so we have a lot to keep under control.

I certainly wish we could find the right answers. The antibiotics clearly are not working. Perhaps I am just frustrated by the lack of speed in getting her out of there when in fact I should be happy she is there being taken care of. Perhaps I am just frustrated that in this new place the docs still talk to us like we are novices in this battle when in fact they can communicate with us as though we are one of them! Perhaps I am just angry as hell that she is there to begin with after we just got fantastic news about her clear scans. Perhaps I should stop writing before I spill my guts completely! :)

Praying for Maryah today, praying for answers, solutions and quick recovery and for her to come home! Please pray with me.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, July 24, 2009 11:58 AM CDT

Good Afternoon!

Just a quick update on Maryah since I am having difficulties getting back to e-mails and phone calls due to some issues that need my attention at work.

Maryah is in the hospital at the U of M today and has been there since late yesterday afternoon. She is not happy about it but it was necessary.

Maryah has developed a pocket of fluid in her hip area that is possibly infected. She has been running a temp and has had severe back pain. She will have the hip tapped shortly here and then they will culture the fluid to determine if it is infected.

If the fluid is infected they will start a course of antibiotics but it will also require that she have a small surgery to have the area cleaned and sterilized. This will force a short hospital stay and some Physical Therapy.

I am grateful that this may be an easy fix and it is not tumor related.

Please say some extra prayers for our girl today. She will need them.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, July 17, 2009 11:44 AM CDT

Good Afternoon!

It is a good day!!! Maryah had her scans on Wednesday. Let me begin by telling you that we spent a good deal of last week and weekend frightened at the possibility that the tumors had not only returned but in multiple locations. Maryah had been complaining of a deep pain in her head, she complained of pain in her right shoulder, left ankle and wrist and most recently developed a very prominent lump on her forehead that was visible to the naked eye. We were expecting to walk into Dr. Weigel's office yesterday only to hear that the cancer had returned with a vengence and we would need to make a plan. We were ready for that fight but weary and sad over the possibility.

Yesterday, there was an unbelievable amount of prayer that took place. There were many prayers sent up by many people. During my workday yesterday morning a group (large group) gathered in my office. We prayed, we wept prayers and gave thanks all while packed into the small space. It was powerful, very powerful.

Yesterday we visited with Dr. Weigel and the first news we received was "there is NO bad news today". The scans were clear. The PET and head CT were completely clear! They decided since she was having the most pain in her head and this visible lump to do an MRI of her brain at 4:00 p.m. with the promise to call with results today.

This morning I recieved word from Dr. Weigel's office that the brain MRI is completely clear as well. They have no explanation for the pain, for the lump, for anything. They could only tell us that it was "all clear".

The relief, the gratitude, the power of miracles all have me smiling ear-to-ear today. I am always humbled by the power of prayer and the works of God but this goes beyond anything I've experienced before. I was feeling fairly angry with God and He knew that I guess because He restored my faith and provided a miracle this day!

With this good news we are able to go into this weekend of family celebrations with joyful hearts. Tonight is Nicholas' 2nd birthday celebration and tomorrow the Emerson family reunion at Square Lake. This is a tradition that dates back long before I can remember. It is a fantastic time and we are all really looking forward to it.

Thank you ALL for your prayers, for having faith and intervening for me when I was fresh out of prayer. Thank you for your continued support and love. Our family is forever grateful.

Maryah's next scans will be in two months. We will update you with the summer's events as we go along!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, July 5, 2009 1:27 PM CDT

Good Afternoon,

It has been an awesome holiday weekend with a trip up North, bbq with good friends and fireworks last night, today the kids are playing in the pool and soaking up the sunshine and having a grand time!

Next Sunday Nuna, Maryah, Morgan and I will be hopping the train to visit Great Aunt, Connie and Cousin, Cari in Mequon, WI. We are all looking forward to the trip!
It will be a first for the girls and me to ride the train.

When we return Maryah will have scans at the U of M to help determine where things are at for her. We will meet with Dr. Weigel on Thursday and we will update you with results and information after that. We are praying diligently that she is completely cancer free and can go on with her summer as she has been!

Maryah has been learning to drive, hanging with her family and friends and is looking forward to even more of that as the summer continues.

On July 20th our family will again participate in Rein In Sarcoma. This is the fundraiser that first brought our attention to Sarcoma the summer before Maryah's diagnosis. The event is held at Como park where you can ride the carousel, visit the silent auction, get your face painted and enjoy good music and lots of fun! The event information can be found through the link below. Remember that Sarcoma patients and there families are invited to a picnic prior to the main event. There is more information about the picnic on the site as well and it requires that you sign up! Hope to see you there!

On August 7th Maryah will be participating in South Saint Paul's Relay for Life. Along with her teammates, DDs Dancing FROGs, she will be participating in the walking and fun activities that come along with an overnight event like this! As always her family is very proud of her participation and her ongoing efforts raise money for cancer research. If you wish to make a donation on Maryah's behalf for the American Cancer Society's Relay for Life you can follow this link which I have also posted below: http://main.acsevents.org/goto/Maryah. It's a cause Maryah and our family feels very passionate about.

In a couple of weeks we will celebrate our Emerson family reunion as we do each year which always brings hours of fun and well...adventure! We are never a dull bunch! That same weekend, little brother Nick will turn two and we will also have time with family in celebration of that event.

Although we are already into July we have so much of the summer left to enjoy. We hope that your family is enjoying it as much as we are. Blessings in your journey wherever this message may find you.

We will update very soon. Take good care and thank you as always, for your continued love and support. We thank God for each of you daily!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, June 14, 2009 10:30 AM CDT

Good Morning!

Another beautiful, sunny day and the temperatures are finally above those we usually see in the fall!

The girls are enjoying the beginning of the summer and besides a fun girls day we've been hanging outside as much as humanly possible.

Maryah has been hanging out with friends and family and having a great time!

There is still so much to do and so much fun to be had!

Maryah will finish radiation tomorrow and also be working on finishing up her Driver's Education classes by Wednesday. Keep your eyes peeled and stay off the roads...here she comes!

We will re-scan her in one month and then determine where we are at with the tumors. We are giving her body a break from treatments, scans, etc since she has been going through so much!

I will update again when we have a date scheduled for scans.

I would like to put out a request for prayers for a couple of special people in our lives.
The first of which is "Grandma Butch". Butch is Maryah's cousins' Grandmother and after losing her husband just a few short weeks ago she is struggling with some health issues and needs prayers of healing and peace.
Also, our dear and long time family friend MaryKay Parks is struggling through cancer treatment and we would like to request prayers of complete healing and peace for her. I would also like to pray for her family, especially her husband Max.

Thank you for your support, for praying with us, and for your continued care!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, June 5, 2009 4:34 PM CDT

LAST DAY OF SCHOOL!

Maryah is officially a Sophmore! After a fun-filled and challenging Freshman year she is going onto her Sophmore year at CDH in the fall! Not before a wild Summer '09 however!

Three of four of our girls finished school today giving us a household with a Sophmore, 7th grader, 3rd grader and 1st grader...not to mention wild Mr. Nicholas who is entering the terrible twos!

Even though it is her first official summer night Maryah has taken a babysitting job and so we will spend the rest of our weekend celebrating the end of the school year and getting ready for the upcoming months.

Just two nights of chemo left and one more week of radiation! We are well on our way to summer fun!

Thanks for checking in. We'll keep you updated on scans which will likely be around the third or fourth week in June!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, June 1, 2009 10:07 AM CDT

Good Morning,

Happy Monday! We are beginning the last week of school for the kids, well...all except Miss Morgan who doesn't finish until the end of July.

Maryah will officially be a SOPHMORE at CDH in the fall! Way to go Ry! This has been a good year for her and the community at CDH has been tremendous in their support for her. We have had the opportunity to meet new friends, re-connect with some old friends and all around it's been a lot of fun!

This week Maryah will start week two of her chemo. She will finish this round on Saturday night. Radiation will be done two weeks from today. So far Maryah has been feeling pretty cruddy with nausea and fatigue and it's been hard to attend school for a full day if at all. I am hoping that will all subside soon. I am certain that after everything has wrapped up that we will do another set of scans to see where we are at. We, of course, are praying like crazy that this is doing the job and the cancer will be gone so Maryah can go about her summer and enjoy it!

We are hoping to celebrate the finish of school this weekend and look forward with joy for the vacation ahead! We will keep you updated as soon as we know anything more.

Thank you for checking in and for continued support for Maryah and our family.

Love and Blessings,
Rachel/Mama

Wednesday, May 20, 2009 1:27 PM CDT

Hello again!

Another hot and WINDY day here! It's lovely though and I am excited to be outside with the kids enjoying the warmth.

Today brought a game plan for Miss M. We will be proceeding with more radiation of the one spot remaining in her left leg. We will accompany that radiation therapy with one round of chemo (same drugs).

With any luck this will take care of the problem and Maryah can go about enjoying her summer of sun bathing and hanging with her friends.

Thanks for checking in again today. We will keep you updated with our progress in the next few weeks. Looking forward to the tail end of this fight!

Have a nice, safe holiday weekend!

Love and Blessings,

Rachel/Mama
"Ma Perez"

Tuesday, May 19, 2009 1:45 PM CDT

Good Afternoon,

Just updating briefly with the information I know for now...

Maryah had her PET/CT yesterday evening. It went well. Talked to her CNP, Kandee today who has been communicating with Dr. Weigel. There is one very small area of disease still lingering in the left leg. It is just outside of the area which we radiated. It may call for more radiation and a couple more rounds of chemo to make it effective.

Of course we hoped that it was completely gone but if it's not this is the best case scenario.

Dr. Weigel will be talking with other docs at the U of M to help to determine what they are looking at by comparatively looking at the older scans and the newer scans. This will help them come up with the best game plan.

As I just told Maryah this is not the worst news possible. All else in her hip/leg looks just fine. Things have improved a great deal and this is just one minor road block! I know she will be just fine and that this next little bit of treatment will only interrupt her summer plans to lounge in the sun and hang with her friends a little, tiny bit!

God loves this child! She is the champ of all champs!

Thank you for checking in...we'll keep you posted after we know the final details.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, May 14, 2009 5:15 PM CDT

Good Evening!

Just one week from Maryah Tift day and we are finding some normalcy to our routine again this week and that includes doctor's appointments, school and other things that don't seem near as fun as the events of last week and weekend!

Maryah had an MRI on Tuesday to determine where we are at with the tumors in her skull as well as her left hip/femur region.

Today we met with Dr. Weigel at the U of M who gave us some results. Maryah's tumor in her skull seems to be completely gone. There is some residule scarring but seems good! The left hip/femur area is harder to read. Maryah has irregular bones due to all of her surgeries, radiations, etc. It's not very easy to read her scans. When her doctor has to pull in the Chief of Radiology and Nucleur to help read scans it MUST be difficult. They have determined that we need another PET/CT on Monday to look at that area. The previous MRI and PET did show some area of possible disease but it was never confirmed around the area that WAS confirmed (if that makes any sense at all). There were some "spots" that we could visibly see on the scan but it was undetermined as to whether or not it was disease. If we get another PET and it doesn't look to be active we can be nearly 100ositive it is not!

We will talk with Dr. Weigel on Tuesday to get further results and plan our attack going forward. I will be updating more just as soon as I know more.

In the mean time...Maryah had a grand time at Prom! She had fun dancing in her recital and Maryah Tift day/her birthday was fantastic!

Thank you SO much to all of you who participated and had fun along with us!

Well...off to make dinner now! It doesn't get much more normal than that!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, May 7, 2009 6:20 AM CDT

Dear Family and Friends,

Today is Maryah Tift day in the city of St. Paul. This is the city where Maryah grew up and where I grew up. The city her father came to know and love as his home and it is an honor for all of us that St. Paul has recognized this day for Maryah for her courage and resilience throughout her battle with cancer. She is a true survivor and yet only one of many fighters that so deserve to be recognized in the biggest of ways!

Today is not only Maryah Tift day in the city of St. Paul it is my baby girl's birthday! Fifteen years ago today at 10:05 a.m. at United Hospital in St. Paul I was blessed with the most amazing Mother's Day gift anyone could hope for. It was a beautiful spring day, sun shining, the beginnings of daffodils, tulips and the new life of spring.

This day was special in so many ways and as Maryah has grown into a strong and loving young woman she has shown that she truly is special. She has integrity, compassion, empathy, and insight beyond her years. She is all any mother could hope for and I am grateful for the fine example that the rest of her siblings have to look up to!

When Maryah was diagnosed with cancer over five years ago at the tender age of nine I was beside myself with devastation. We all were, her entire family stood astounded that something so tragic could happen within the strong walls of our family. We had done all we could to keep her healthy, protect her from hurts...what had we done wrong? That was the question that flooded my brain. It took no time at all for me to realize that as hurtful as this diagnosis was that Maryah had peace and understanding about it that none of us had. She was embracing the path God had laid for her. That night she asked me if she had cancer. As I spoke to her and confirmed her fears she slowly settled herself and looked into my eyes and said something I have never forgotten..."I think I have cancer so that other people can learn things from it". And so God spoke to this mother within the walls of my bathroom as I sat on the edge of the tub talking to my little girl. A simple woman in the presence of one of God's angels on earth. My heart completely warmed and there was no question what we were to do. We would fight, we would teach, we would embrace others with struggles and help heal hurts, we would pray and remain faithful regardless of the circumstances. None of us are afraid to admit our faults and weakness throughout all of this and despite our faults and weakness there have been so many of you surrounding us to pick us back up that it has been impossible to lose faith, strength and courage.

The undying support and love that is poured out by each of you to Maryah and to our family is so amazing that it is hard to put words to it. It brings such humility for all of us to have that support. It is truly difficult to find the right words to say thank you for a gift so immense so I hope today you will accept just those simple words but try and feel the immense power behind them..."THANK YOU". I so wish that I could find the time to send a personal thank you to each and every one of you. I hope my simple words will do and that you will feel the love and appreciation from our family.

On this day I also wish to recognize the following businesses/friends for their support of Team Maryah. We hope you will support these folks in our community as they have supported Maryah:

KEYS CAFE: www.keyscafe.com - please visit their website for menus and location information - Maryah LOVES to eat here! Okay...we ALL do!

LATUFF BROTHERS AUTO BODY: 880 University Avenue, St. Paul, MN 55104 - www.latuffbrothers.com - (651) 224-2828 - This is the awesome body shop Dan works at and they are environmentally friendly!

SCHUSTER CO.: Mike Brask- 1642 Carroll Avenue, St. Paul, MN 55104 - http://www.ljschuster.com - (651) 645-3991 - Supplied all of the Team Maryah tees!

DDs DANCE STUDIO: Dianne Martin and all her dancers! - 3090 Courthouse Lane, Eagan, MN 55121 - www.dddance.com - (651) 452-5480 -Long time family friend and dance teacher to me and my girls!

GOOD SAMARITAN SOCIETY STILLWATER - 1119 Owens St No, Stillwater, MN 55082 - www.good-sam.com (651) 439-7180 -By far the best staff in Long-Term Care I know!

CHIANTI GRILLE: 2050 North Snelling Ave., Roseville, MN 55113 - www.chiantigrill.com - (651) 644-2808 - Owned by our special friends that are forever supporting our family!

CASPER & RUNYON's NOOK - kitty corner from CDH on Hamline Ave, St.Paul, MN 55105 - www.crnook.net - Thanks Mike for buying our Team Maryah members lunch on Maryah Tift Day! We loved it!

I would also like to thank CRETIN-DERHAM HALL and ST. THOMAS MORE for their continued support of Maryah and our family. They have always gone above and beyond to support us. It is so clear why we have entrusted the care of our daughter to these schools and their compassionate faculty and staff. It is their caring and nurturing nature and teaching of faith that have made a lasting impression for Maryah and all of us who have had the privilege to be involved in these great communities!

Last but not by far the least I would like to thank our friend Megan Barrett-Martin for all she has done and continues to do to help honor Maryah and assist our family in difficult times.
Megan has been Maryah’s constant cheerleader keeping her happy and distracted when all else seems too rough to handle. She has arranged this special day for Maryah and organized the creation and sales of the Team Maryah t-shirts. Thank you Megan for all you do every single day to make our lives that much easier. You are a warrior for cancer kids everywhere and without you the world would not be quite so bright! I thank your dear husband, Bryan and daughter, Allie also for their constant support of you and all you do for others!

As we begin this day of celebration in honor of a fine young woman and all of her wonderful attributes I ask that you say a prayer with me:

"Lord, please bless Maryah today as you do every day. Please wrap your loving arms around her and bring her continued peace and understanding along with the strength and courage to continue battling this disease. I ask you to bring complete healing to her body and rid her of cancer for good. I ask that you are with us today as we celebrate Maryah's birthday and Maryah Tift day bringing your peace and joy into all the celebrations and conversations this day. Please bless each and every person who surrounds this child and family with their love and support. Bless them in mighty ways! Thank you for this day. In your son's name. Amen."

Once again, many thanks! I send love to each of you and hope you feel just how grateful we are. Have an amazing day! Hug your parents, your children, your siblings, anyone you love and remember to tell them how important they are to you today. Today is a gift!

Love and Blessings,
Rachel/Mama
"Ma Perez"

_______________________________________

Check out this link for our local CG paper. They have printed the story and will be following up with an interview and story again next week:

http://www.facebook.com/ext/share.php?sid=94970294026&h=1limp&u=yxs-m&ref=nf

Wednesday, April 29, 2009 1:03 PM CDT

Good Afternoon Family and Friends,

There is so much brewing in the Tift/Perez clan. We are all excited for our girl's upcoming events especially her 15th birthday next Thursday on May 7th. It's so hard for me to believe that my baby girl is going to be 15!!!On this special day the Mayor of St. Paul has declared Maryah Tift Day! Many of you are already aware and have purchased your "Team Maryah" t-shirts. I want to thank Megan for contacting the mayor's office and for getting t-shirts created and organizing the sale of those t-shirts. What an excellent way for this HUGE team supporting Maryah to show their support! Thank you to all of you that have purchased a t-shirt. Again, your loving and generous support are helping our family tremendously. I feel richly blessed as I know Maryah does as well!

There are many local businesses that have participated and I hope that you will come visit the site on May 7th when I will post their information as a "thank you" for their support. I hope that we as a community can support their businesses in the future.

Maryah has been invited to Prom by a nice young man from CDH. This is another experience that we are really looking forward to on May 9th. The preperations have been very fun and I am once again humbled by my lovely daughter and feeling very honored to share these special memories with her. It always brings my heart joy to watch her when she is happy and excited!

Maryah, Morgan and Tori will be rehearsing and preparing for their dance recitals this week and next as well so there are so many fun things going on!

Today marks the beginning of week two of Maryah's chemo. She has had a two day break and now is back on for five. Thankfully her chemo schedule left a week of recoup time before the b-day, recital and prom. Radiation ended last week and since then the effects have really kicked in making Maryah very tired. That usually wears off after a couple of weeks so I'm praying it is sooner rather than later. When she is so tired and sometimes nauseated it makes it harder to spend an entire day at school, although she has continued to go as much as possible.

After this round of chemo Maryah will have another MRI on May 12th to determine where we are at with disease. If she has been responsive to the radiation and chemo we will begin discussions around a clinical trial that may be suitable for Maryah. I expect we will have made a decision shortly after we get her MRI results. Dr. Weigel feels very good about how well Maryah is responding to chemo and radiation at this point. She is really doing quite well very quickly so hopefully these clinical trials will be the way to go as far as less side effects, great response and kicking this disease out for good!

Today Maryah is at the U of M Masonic clinic to get some fluids. She is a bit dehydrated and experiencing some headaches. It's hard to drink a lot when you have an upset stomach as it is. The fluids should help her to feel better however.

We will keep you updated as we move through this. Thank you to all of you who are calling, e-mailing, praying and supporting us in so many ways. Your continued support is a blessing and helps keep us afloat.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, April 3, 2009 6:40 PM CDT

UPDATE - APRIL 7, 2009 1:24 p.m. -
We received news on the final results of Maryah's PET/CT scan today. Kandee informed us that the PET is clear of any further disease other than we have already detected in her left hip/femur area and top of the skull! Praise GOD!

Love and Blessings,
Rachel/Mama
"Ma Perez"
_______________________________________

This is Megs doing the update this time...so if you have any questions...call or e-mail ME :)

The City of Saint Paul has declared May 7, 2009, Maryah Tift Day!! (which happens to be her birthday!!). In honor of this day, we are selling -BECAUSE LIFE IS WORTH THE FIGHT - TEAM MARYAH t-shirts. All proceeds will go directly to Maryah's medical fund. T-shirts are $20.00 and we ask that everyone wear them on May 7! As a special gift to Maryah, we ask that you take pictures of your group wearing your shirts on May 7. Please e-mail the picture to : teammaryah@yahoo.com We plan on making a photo album for Maryah, so she knows how many people support her!! So, pass this on, make sure everyone has a Maryah t-shirt on that day!!

IF YOU WOULD LIKE TO ORDER A T-SHIRT, PLEASE SEND ME YOUR E-MAIL ADDRESS(email: teammaryah@yahoo.com ) AND I WILL SEND YOU A FLYER!!

T-shirt orders and payment must be turned in by Thursday, April 16th. I will have the t-shirts ready to distribute on Weds., April 29. If you would like your t-shirt mailed, please include $4.00 for shipping and please note that you would like your t-shirt mailed to you. If you would like to pick your t-shirt up, I'll send out another e-mail in a couple weeks letting everyone know where and when you can pick it up. I will make sure everyone has their t-shirt in time for May 7, 2009, MARYAH TIFT DAY!!

CRETIN-DERHAM HALL STUDENTS..PLEASE ORDER YOUR T-SHIRT FROM MARY JO GROELLER AT CDH. CDH WILL BE HANDLING ALL OF THE STUDENT T-SHIRT ORDERS AT CRETIN-DERHAM HALL. MAKE SURE YOU AND YOUR FRIENDS ORDER ONE!! :) T-SHIRTS FOR CRETIN-DERHAM HALL STUDENTS WILL ALSO BE DISTRIBUTED AT CRETIN-DERHAM HALL!!

Any and all donations go directly to the Maryah Tift Fund. All donations are welcome :) Donations & t-shirt orders can be sent to:

Megan Barrett
250 Dakota St
West St Paul, MN 55118

(Make checks payable to "Maryah Tift Fund")

THANKS EVERYONE!!

Megan Barrett
teammaryah@yahoo.com
651-260-1861 (cell)

Monday, March 30, 2009 4:52 PM CDT

Good Afternoon,

After a long day at the U of M we have a plan in place. We met with Dr. Weigel first this morning and she showed us the films so we can see the tumor spots that are of concern. The tumor in Maryah's skull is at the top of her head and measures around 2cm. It is currently pushing on her brain but not IN her brain. It is giving her terrible headaches however. The area in her hip may extend further into her femur than originally thought and so it is causing extremem pain. She is really having a lot of difficulty with pain today especially.

We then met with Dr. Reynolds in Radiation Oncology. The plan we made there is that we will begin radiation therapy on Wednesday. Along with that she will also begin taking the same chemo drugs as she did the last time. Ironotecan and Temadar. Specifically these drugs are radiation sensitizers so they will help enhance the positive effects of the radiation. She will have 15 days of radiation and approximately two "rounds" of chemo and then we will re-vist and scan to see if there is improvement. At that time we may be able to determine eligibility for a clinical trial. Currently Maryah is not eligible for the trial because of the spot on her head.

The good news is that she can now take BOTH chemo drugs orally whereas last time around the Iranotecan was IV infused. This will be more convenient although side affects are the same.

We got some more pain meds in place to help get her through but the hope is that the radiation will alleviate some of the pain she is experiencing.

There is a lot to take in after this appointment and a new routine to put in place. We are working on changing things up and will just go with the flow of things.

Friday, Maryah will have a full body PET scan to determine if there are any other areas of disease in her body. We will not be doing a bone marrow biopsy this time around because it won't change the course of treatment regardles the results. One less surgical procedure to go through this time around.

Dr. Weigel is still positive about our options as are we. The U of M is a new animal for us and we are working on finding our way around over there. New Pharmacy, Radiation, clinic, lab, Radiology, etc. It is big and there are A LOT of people around. Although it seems a little less personal it is good to be there and have all options available to us. Dr. Weigel and her CNP were so amazing about getting things in place and ready for our appointment today. There was no guessing and all the information and answers were in place as were necessary appointments for this week. I was pleasantly surprised by this and by the fact that they had done their research and they put all the pieces together. This time around we didn't have to piece things together ourselves. That was refreshing and helpful in a time of high anxiety.

We will keep you updated as we get new information and if anything changes. I am hoping Maryah will get on and update the page herself when she is feeling up to it.

Thank you for checking in and for all your prayers and support. You are all wonderful and it is such a peaceful feeling knowing there are good people who are out there looking out for our family and helping any way they can.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Wednesday, March 25, 2009 11:58 AM CDT

Good Afternoon,

Well we finally have all the phone calls taken care of and the back and forth to get answers is complete.

The doctors at the U of M have confirmed that we are looking at disease in both the left hip and the crown of her skull.

Overnight Maryah developed a rather large and outwardly visable lump on her forehead. They are unable to determine from the MRI that there is anything there. I am pushing for a full body PET/CT within the next week to determine if these two spots are the only ones we are dealing with.

With the help of some stronger pain medication Maryah is able to walk better on her own today and needs only limited help getting around. Thank God for good pain meds!

We will meet with Dr. Weigel when she returns to MN next Monday at 9:00 a.m. At that appointment we will discuss our options and decide on a game plan to fight this.

It's never a question as to will we fight rather the question is how will we fight? That question will have an answer soon and then the next round begins! I am betting on The Champ to win this round TKO!

Care to join us in the winning corner?

Love and Blessings,
Rachel/Mama
"Ma Perez"
________________________________________
For those who may want comfort or are looking for reasons why this is happening, please allow me to share some personal thoughts that have been taught to me. These lessons are some that have kept me company as our Champ has battled through many struggles. I ask for your forgiveness if this sounds preachy. They are very simple yet profound reminders:

God is LOVE...and God made us in His Love...we are called to live His Love...and His Grace is what comes back to us for comfort, peace, and joy. God is in everything...and is all encompassing and so we can praise God in advance. We can, if we so choose, to not operate on our own strnegth, rather to surrender all our fears, sorrows, and hurt unto Him, THEN we have an opportunity to fully rely on Him. "For His grace is sufficient for us." When we follow God...we believe everything else will follow.
Love and Grace,
Zach/Dad/Ringman

Monday, March 23, 2009 10:49 AM CDT

Good Morning,

Seems when I speak of a normal life things begin to change! Darn it all!

Maryah is presently at the U of M with Zach getting a CT and tomorrow morning I will be bringing her back to the U of M for an MRI.

She is experiencing excruciating pain in her leg and some pain in her arm as well as a painful lump on her skull.
Of course I'm not sure what we are dealing with yet and I always hope for the best. I won't know results until much later tomorrow or even Wednesday.

The most positive thing to remember right now is that we are familiar with the drill should we be put to the task we will handle it as we always have. We also have "lots of options" as Dr. Weigel told Maryah when we first began to work with her, should the cancer return.

We are at that familiar 9 month mark and unfortunataly we are experiencing scary and heart wrenching things again today.

Maryah is scared and we are all scared too. Zach and I remain prayerful in this time and as Dan says we ALWAYS hope for the best.

Please pray for Maryah's pain to be alleviated today and that we get positive news that is easy to deal with.

With many outside distractors facing our family it is only by God's will that we get through. It is through support and prayer and the help of all those of you that care, help and walk through this journey with us that we can keep our heads above water and keep fighting on.

Thank you to all of you supporting us! We send our love. Thank you for your prayers they are much needed today!

Love and Blessings,
Rachel/Mama
"Ma Perez"
_______________________________________

CT says there is something on her skull but need an MRI to verify. MRI for hip tomorrow morning and then MRI for head on Thursday evening. This means it's not likely to get results until at least Friday. Still praying although Maryah and I are taking it in and planning our attack!

_______________________________________
Tuesday, March 24, 2009 1:05 p.m.

Ry had her MRI of the hip this morning and by the grace of God and I'm sure lots of prayer she will get in for her head MRI this afternoon at 2:30. That is good. We know there is about a 2cm mass on her skull right now and that is all we know. Maryah and I have acknowledged together that the Ewing's has returned and we are ready to fight again. We will keep you posted. Thank you for checking in again today.

Friday, March 20, 2009 11:31 AM CDT

Hello to all friends and family!

I am sorry I haven't updated is so long but as most of you know high school is a very busy time! Between School, homework, dance, family and friends there is not a lot of time for anything else(: But I am really enjoying my freshman year of high school. I love Cretin-Derham hall. I don't think I could have asked for a better school. Over the last four years I have missed out on doing stuff with friends and school activities so it has been nice catching up on all of that. Hockey games, hanging out with friends most weekends, church! I love it all. It's nice not to feel trapped in the house and not feeling well.

I hope all is well for everyone! I will try and update again soon! All my love and God Bless.

~Maryah/The Champ

Tuesday, February 24, 2009 1:07 PM CST

QUICK UPDATE (INFO):
For those of you who would like to join our family in volunteering to help with the Rein In Sarcoma Party In the Park (Monday, July 20th) please feel free to go to the website and get more information www.reininsarcoma.org. The "kick off" planning meeting is on Thursday, March 12th at the U of M Masonic Cancer Center. I know they would love new energy and talents to assist with this wonderful event!

_______________________________________
Good Afternoon!

You are correct Megan the month is nearly over and I haven't even updated (nor might I point out has Miss M)! That must mean that all is well! It is in fact, Maryah is doing well this month. School is going smoothly with finals coming up this week and next. Life in general for Maryah is going just as it should for a Freshman girl.

Maryah will be taking drivers ed next month. We have come to find out that she will have to go through specialized behind-the-wheel training with adaptive equipment since she will need to drive with her left foot. This was very defeating news for me as a parent since the cost to make that happen is enormous and I need to find a way to make it happen. It's such a simple request that she makes...I want to learn to drive...what almost 15 year old doesn't? I know I can make it happen but sometimes I just wish things could be a little easier! :) Don't we all?

Enough about all of that, a simple road block. Maryah has dyed her hair blonde, will be participating in an upcoming dance competition, has been spending time with her sisters and friends and all-in-all she is a happy girl.

I keep looking at her and remembering every minute of what she has been through and I stand in awe at her strength and grace. As a mother you never want to see your kids suffer the agony I have watched Maryah suffer. However having seen that side of suffering and then now, the side of healing and joy I can honestly say I have seen the grace of God.

Maryah is the ultimate defender of her body and soul and I am so proud of her strength and commitment to this battle. She helps me affirm my committment each day and each time she soars ahead! I aspire to be more like my daughter when I grow up! :)

Heavenly Father today I pray for Maryah that she has complete healing in her body, that the cancer stays away, that she continues to find strength within her to not only fight the battles she encounters but to remember the piece of her that loves, cares, exudes kindness and compassion and helps others to remember and find their faith. I pray that she continues to practice true forgiveness, kindness and love for others before herself and that she lives her entire life with the tremendous integrety she has found within herself. -Amen

Please pray with me today and remember that my prayers include you all (our support system) each day!

I am a proud Mama and a thankful one too. God Bless your day! I hope to not update again for another month! :)

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, January 30, 2009 3:16 PM CST

Good Afternoon!

Well it's been a good day! Maryah, Zach, Nuna and I went to see Dr. Clohisy to talk about what we can do for Maryah's leg to fix the length differential, to fix the pain she's having and possibly fix the stiffness so she can bend again.

We decided there isn't any surgery that can correct those three things at this point! Dr. Clohisy is not convinced that Maryah is ready for an amputation which is the only thing that would resolve all three issues. He told her a story of a woman who he treated when she was a young girl. She had a tumor in the same location as Maryah. She is 26 today and married with children. She has come to him to ask for an amputation because she has had enough of the pain. He felt that if Maryah was truly serious about it she would offer him a compelling reason! I thought that was very perceptive.

He told Maryah that she has overcome so many things they wouldn't have expected her too thus far. Like three recurrences and a major infection amongst other trials and struggles. He feels she has a "fine leg" and that it will be a good leg for her.

He is going to look for some second opinions and advice from Maryah's other Doctor, Dr. Robi Thompson and then also from a friend of his in Washington. He says he is 99% sure that there is no way he can correct the entire four inch leg length differential but maybe one inch and that would take up to 12 surgeries to get there. Not really a grand idea!

I am comfortable with the fact that we really didn't have a solution at the end of our appointment today. I am happy to know that we can save Maryah's leg right now and that she can continue to dance, walk and even drive just how she is. We have some meds for pain now (non-narcotic thank goodness) and we will look into a shoe lift to help alleviate some of the difference sometimes.

All good information and all very calming. Maryah said on our way home today "Mom, this is the first summer I won't have chemo, extra school or anything to do...except get a job!" I thought that was very sweet and also very refreshing!

Thank you for checking in and keeping up with us. We'll be updating as we continue regular scans and check ups with Dr. Weigel.

Love and Blessings,
Rachel/Mama

"Ma Perez"

Tuesday, January 27, 2009 3:44 PM CST

Good Afternoon!

Just a quick update to let you know we are going to visit Dr. Clohisy at the U of M on Friday morning. We will discuss Maryah's leg and options he can work with. We will try and make a decision about what we will do and when.

It will be a struggle to try and continue in dance this season and have surgery in conjunction with the dance season. However, pain is the priority and something that needs to be relieved right away.

I will update after the appointment and let you know what our plans are!

Thank you again for prayers and support!

Love and Blessings,
Rachel/Mama

"Ma Perez"

Monday, January 12, 2009 5:56 PM CST

Good Evening!

Although today has been very stressful both in waiting for news and driving in this muck...it has come out for the better! Maryah's MRI shown no sign of tumor.

The doctors feel it is likely aggravation of the hip that we are dealing with due to the added stress on her left side from walking with such a leg length differential.

We will meet with Dr. Clohisy on 1/30 to discuss how to proceed to relieve that stress. This means we need to make surgery decisions sooner rather than later. Although we can acheive pain control on a short-term basis it is not a very good long-term solution.

We hope to make a decision and run with it now that we have the option. Without current tumor activity that is a goal we can meet.

We will continue with scans as usual to monitor for tumor activity.

As we meet with Dr. Clohisy and we learn more information we will keep the site updated.

Your many prayers and endless support are appreciated beyond any words I can type here.

Thank you all so very much! Please pray this day for Maryah's Great Grandma Hozempa who has passed at the very young age of 103. She has finally made the journey Home. I am very certain she is thrilled to be there!

Love and Blessings,
Rachel/Mama
"Ma Perez"

P.S. I will post pictures soon as Dan is taking Maryah to her CDH Father/Daughter dance by request of Zach who will be out of town in NY for a short time. Although Maryah will miss going with Dad she is equally as happy to attend with Dad Perez.

Friday, January 9, 2009 5:17 PM CST

Good Evening,

I did speak with Dr. Weigel at the U of M today and although she seemed positive she doesn't have definate answers for us.

She did say that no matter how she manipulated the CT scan she couldn't see anything wrong with the bones in M's hip. She did however say, much like the Radiologist's report that we cannot ignore the "hot spot" from the PET scan AND of course the immense pain Maryah has been in this week.

We are going to have an MRI done on Monday early. Maryah will then meet with Dr. Weigel for an exam. That will help us determine if we are looking at tumor in the hip or Bursitis. An MRI shows joint space and soft tissues as well.

In the mean time Maryah has some pain medicine to help her now and she should be able to rest more comfortably tonight.

She is having a party tomorrow for her dance friends that will be held at the Perez house and quite honestly I am looking so very forward to a house full of gitty, teenage girls. I hope they all have fun!

I will update more on Monday!

Love and Blessings,
Rachel/Mama

Tuesday, January 6, 2009 3:20 PM CST

Good Afternoon!

I did receive a call from the CNP at the U of M this afternoon.

She says that the scans are ALL CLEAR. There is a "hot spot" in the left hip area however that could be simply from the weight bearing on this hip that is due to the leg length discrepency.

Dr. Weigel will be returning to the clinic on Friday and so both she and Dr. Clohisy can wiegh in on the scan results and this "hot spot" then. Once I have gotten final word from them I will return with an update.

I am not at all worried about this "hot spot" because with all the prayer warriors at work out there praying for this "all clear" it simply has to be just that.

I am happy to come here today with what I interpret as good news.

Thank you for your constant prayers and support. We send our love to each of you and ask that you continue to pray for the final "all clear" on Friday.

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, January 5, 2009 9:50 AM CST

Goodmorning!

Well...Maryah began writing this and has now handed the computer to me because apparently today is the day for "Plan B" in all areas!

It started with arriving at the U of M only to be told that someone had "mis-communicated" and had scheduled Maryah for a PET scan TOMORROW at 7:00 a.m. instead of TODAY as they told us. The clinic had planned to see us at 11:00 today but the PET folks got things mixed up. SO...we left there (a little more upset then when we arrived)and decided to have a little breakfast.

When we arrived at Copper Dome we realized it is Monday and Copper Dome is in fact closed on Mondays. So on to "plan B" again, we went to the St. Clair Broiler.

We have now decided that a movie would be just right for this day we all have scheduled off, so Maryah, Nuna and I are heading off shortly to see Marley and Me.

Tomorrow Dad will take Ry to get her scan. Unfortunately Dr. Weigel is out of town the rest of the week so we may get results from her CNP on Wednesday. As soon as we have results I will be here to update you!

Thank you for all the love and support you have shown. Please keep praying just go to "plan B".

Also, please extend your prayers to our friends in South Dakota the Hudelson Family. I heard from Lorie on Saturday that her daughter Amber lost her battle with cancer. They are having services tomorrow and Wednesday. We are sending out all of our love and prayers to their family.

Love and Blessings,
Rachel/Mama

Tuesday, December 30, 2008 4:09 PM CST

Merry Christmas and Happy New Year to everyone! Christmas is such a blessed time of year. We have enjoyed family time, traditions and the many blessings we have to be grateful for!

January 5, 2009 marks the fifth "anniversary" of Maryah's orignal diagnosis. Much like five years ago it is the day she is to return to school from Christmas break and that brings similarities that are uncomfortable and bring hard, hurtful memories to our family. The irony is that I called to schedule scans and they called back only to tell me that they had scheduled for January 5th. This of course strikes fear in our hearts and we are praying extra hard!

When I came here today to journal I didn't expect to put words to those fears and that anxiety. I try to be upbeat and carefree on this site most times. This is however something I cannot ignore apparently. Sometimes we "fake it 'till we make it" and that works. Faith keeps us going even when we are weary. Faith will continue to keep us going.

I will not hesitate to ask for all of your spare moments. Please devote them to praying for clear scan results for Maryah next Monday. I will not even consider telling you that I am not afraid nor that I am anxiety ridden over this beast we call cancer daily. I will not tell you that I don't need anything, that we don't need anything, that we are fine! We are not. None of us are even though we are faking it pretty well.

I can't begin to imagine how Maryah must feel even though she hasn't voiced her concerns. We are strong in all of our weakness! We still need prayer, support and care. I ask that of you yet again.

I want more than anything to go into 2009 with a cancer free daughter!

I will be sure to update when we have results. In the mean time...please pray!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, December 29, 2008 9:08 AM CST

MERRY (LATE) CHRISTMAS EVERYONE!!!

~Maryah

Thursday, December 11, 2008 12:13 AM CST

Good Afternoon!

I wanted to get a brief update out regarding our appointment with Dr. Dahl yesterday.

He is obviously a well respected physician. Those that we spoke to within Gillette yesterday seem to have complete faith that this man is nothing short of a miracle worker!

He spent quite a bit of time going through Maryah's priorities and then going over the options to resolve her most priority problems.

There were options that aren't really what we looking at as the "best" options. For instance we can grow bone to fill in the 32 cm that Maryah is missing but it would take around 4 years to recover completely and the recovery would be very tormenting.

There are other options that may be more feasible however. Maryah has a difference in her gait of 8.5cm (approximately 3.5 inches). This is causing bursitis in her hip area which can be very painful.

One option we are looking into is an internal femural prosthetic. Her knee would not be hinged and so she would be required to have a brace on her knee at all times to help her control the knee since she will be missing ligaments and tendons that you and I use to kick out our knee. She can use muscle to bend her prosthetic knee however. She will still only be able to bend about 70 degrees due to scar tissue. This would allow her to drive, dance, and correct the difference in leg length. This option will allow Maryah to salvage her leg and continue fighting for that limb!

The other option is an above the knee amputation with a prosthetic. This would be a good option and she could still drive, dance (with some limitations), ride bike, etc. This however is not the favorite option consider how hard we have been fighting to keep her leg!

These are big decisions and difficult decisions. We continue to fight for Maryah and Maryah fights for herself!

This visit was an emotional one but we cry not because we feel sorry for ourselves but because we do get weak sometimes in this battle, we do feel sad, afraid, hurt, angry...the spectrum of emotion is grand. We are happy with the visit, Maryah likes Dr. Dahl very much and we are glad to be armed with information so we can move forward!

Thank you for following the story! We will have more information soon and January 5th will bring scan results. I hope to be back with GREAT NEWS!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, December 9, 2008 6:00 PM CST

Good Evening!

Tomorrow Maryah will visit Dr. Dahl at Gillette Children's to discuss the possibility of a surgery to lengthen her right leg. This is something that must happen before she can receive a new prosthesis to replace the rod that is currently in place.

Maryah is still hoping and praying for a new femural prosthetic along with knee joint. She is planning to work very hard even if she can only get a little bend.
It is her goal to drive someday soon and this is a necessary move.

We are praying for good news from Dr. Dahl and since this is his specialty we think it is possible for him to help Maryah.

Maryah will be scheduled for scans again as well. I spoke with Dr. Wiegel's office at the U of M and we will plan for January 5th (after the holidays) to do any further scans. Again, we are praying for the ALL CLEAR!

So...I ask that during this time of gathering information and checking in on Maryah's body that you all join us in prayer for only the very best news. I have faith that it is in God's will to help Maryah through this. She will continue to fight the battle and stay on top!

First trimester grades show Maryah is doing excellent in all of her subjects and needless to say, we are very proud of her accomplishments!

We hope you are all enjoying the holiday season and as always we are thankful for you and wish you a blessed and peaceful Christmas and New Year!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Tuesday, November 25, 2008 7:29 PM CST

Hey every one!

Maryah here! Oh my goodness this week was very long and stressful at school. I had Finals Friday, Monday, and today (Tuesday). Although it was long and took a lot of time and work it is over now and it feels really good to have completed my very first finals in high school!
My little sissy Morgan just had a birthday on November 23rd. She is now 8 years old and is getting so big! We celebrated her bday by having her cousin Shayna over and friend Allie from dance to have a slumber party with cake and ice cream. She really enjoyed it and is loving being 8 years old now!
I hope that you all have a wonderful Thanksgiving and enjoy the rest of your week! I am thankful for each and every one of you and I really don’t think I could have made it through these last couple years without all of you there to support me so thank you all sooo much!
All my love and God Bless!

~Maryah/The Champ:]

Tuesday, November 18, 2008 11:29 AM CST

Heyyy Everyone!

Maryah here. Ahhh I am so sorry I haven't written in so long! Life has been VERY crazy. School is taking up so much of my time but I am really enjoying it! After missing so much school over the last couple of years its really nice to be back in the game and learning all sorts of new things and being with friends! Speaking of school I am actually here right now so I'd better get back but I will write again as soon as I can find the time and of course right when we make a plan for my surgery. Thank you all so much for writing to me. I still love reading all of your guestbook entry's:] I hope you all have a great rest of your week and a fabulous Thanksgiving!!! All my love and God Bless!

~Maryah/ The Champ!!!

Saturday, October 25, 2008 9:10 PM CDT

ALL CLEAR!!!! NED!!!

Good news!!!!

We will update when we know which option we choose for Maryah's leg!

YAY!!!!!!!!!!!!!!!

Love and Blessings,
Rachel/Mama
_______________________________________

I love you homegirl Megs:]]
~Maryah

Thursday, October 23, 2008 7:38 AM CDT

Good Morning!

After a very long afternoon/evening at the U of M yesterday Maryah has completed her scans and we should be getting results as soon as Monday when Dr. Weigel returns from out of town. A little bit of a wait but not too terrible.
We met with Dr. Clohisy on Tuesday to determine options for Maryah' leg. There were several that he gave her: 1) Do nothing (not an option). 2)Use cadaver bone and she would have a straight leg permanently AND it takes three months or greater to heal from this surgery (not really an option either). 3) Get a new prosthetic knee after consulting with Dr. Dahl at Gillette Childrens, he is a limb lengthening specialist. Maryah's right leg is three+ inches shorter than her left at this point and would not only require a prosthetic replacement for the rod but also an extreme lengthening to get her gait corrected (this seems the better option).
We are awaiting a call from Dr. Clohisy's nurse who is scheduling an appointment for Maryah with Dr. Dahl to determine if he can help her. She also had x-rays to determine her current bone strength to find out if she can handle a prosthetic replacement. Remember the rod she has is driven into the bone that remains in her upper femur and then through the tibia almost all the way to her ankle. This may have caused some bone weakness during the years this rod has been in place. We are hoping not!
There is a lot to look at. We have to determine if the pain Maryah is having is anything we should worry about or need to treat and then we can determine where to go with the leg issues.
What I will say is that Maryah is here, doing well, thriving in fact and she is ready to continue moving forward. We are here to support her while she is doing the fighting. Like Zach says she is the champ we are just the ring men! She has quite a bit of tenacity and I am proud!

Thanks for checking in and keeping up with Maryah. We always love hearing from you and we always appreciate your continued prayers and support.

Maryah still checks the site daily and is always encouraged by the positive messages!

Love and Blessings,
Rachel/Mama

Friday, October 3, 2008 7:10 AM CDT

Good Morning!

Just a quick update on plans for Maryah. We will be making an appointment with Dr. Chlohisy for Maryah to go in and discuss a new prosthesis for her leg. She will be looking at a new knee as well and all that comes along with that. We know that it will require extensive physical therapy to get her back to good but she is up for the challenge and she has lots of support from all of us!

Maryah will have her next PET/CT scan on October 30th at the U of M. We will keep you posted.

School is going well and she is enjoying all of her classes and making all sorts of new friends.

There is much to be thankful for and we truly appreciate your continued prayers, messages of encouragement and support and love for our daughter. Thank you all so much!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Thursday, September 25, 2008 6:46 AM CDT

Good Morning!

What a glorious couple of weeks of weather we've had! This fall has been just amazing, warm, cool, warm and sunny...it's really nice!

I am excited to say that my sister, Joanne's surgery was successful and there is no longer of fear of cancer. I was a bit fearful to say that there was a fear. I have learned that just speaking the beast's name out loud can give it way to much power. Anyway, she is fine and recovering at home now after a very invasive surgery.

Secondly I am so very glad to report that Amber is feeling well enough to make the trip from SD to MN today to visit with Dr. Weigel and find out what other options they have to treat her Ewings. We are so thankful that she is feeling well enough to come and they will even be driving! Go get em' Amber! We're rooting for you at the Perez house and all those that read this are rooting for you too young lady! (www.caringbridge.org/visit/amberhudelson).

After a long week (yes already) I have reflected on life and why God gives us the challenges He does. For many of you who know me and know the history of my life, I have been very challenged since the age of 16 when my mother passed away. Since then through choice or no choice I have been handed struggles to make it through. I assumed at some point I would pass the "character test" being given to me and I would be done and life could be normal. As recent as this week the challenges continue to be put in front of me and I have gotten so upset each time until I pray on it and realize that God will never stop testing my character and my faith. He will continue until I am at his doorstep to make me worthy of being welcomed home. I have always said "I never wish for a lavish lifestyle just some normalcy". What I have had to come to realize is that God trusts my loyalty and my faith enough to bless me with the many challenges in my life. I feel incredibly blessed by that honor. So today although times are occassionally dark I am thankful for the honor that I am blessed with. I pray for all those that need prayers today. The unspoken and the spoken prayers.

Thank you for helping our family each day to cope with Maryah's struggles. She is also building her character and I cannot wait to see just how amazing she has yet to become! We both have a long road to travel and I'm glad we can do it hand-in-hand.

Have an amazing day!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Sunday, September 21, 2008 9:33 PM CDT

Good Evening!

It feels too long since we've updated here again and I wanted to get back here and make sure you all have an idea of where we are at!

First off with the good news of more clean scans Maryah is continuing to enjoy high school. She has reported very good scores on Math tests and is enjoying her Values class a great deal. She is currently looking into some volunteer opportunities with at risk children, volunteering at Dorothy Day and other possibilities that have peaked her interest. I am very proud of her spirit and sense of dedication to helping others!

Secondly I want to request yet again some prayers from all of you fellow prayer warriors out there. I have two requests:

1. For my sister Joanne who is having surgery tomorrow, pray that the surgery goes smoothly and all comes out well.

2. For our new friend Amber Hudelson and her family (www.caringbridge.org/visit/amberhudelson). This is a wonderful young lady with Ewing's Sarcoma who will be traveling here to the U of M next week for a second opinion from Dr. Weigel. We are hopeful and prayerful that this wonderful family will receive some hopeful answers and lots of OPTIONS!!! :) Keep them in your prayers for hope, spirit, strength, wisdom and traveling mercies! They are coming a long way.

Thank you for always helping us and the others around us who need your prayers and good vibes!

We are happy to give wherever we can whenever we can as so many have given to us!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Friday, September 12, 2008 10:42 AM CDT

Good Morning,

I am here with good news to report! Maryah had her PET/CT scans at the U of M yesterday and again they were "ALL CLEAR". We are celebrating the joy and thanking God!

Maryah can now go into the weekend and Homecoming without this hanging over her head!

Tonight is the big game. GO RAIDERS!!!!!!!! Maryah will be enjoying that with her cousins and her friends.

Tomorrow night she is going to the Homecoming dance and I'm sure will look stunning so we will be sure to get some pictures up ASAP! I am sure Megan will help me with getting them into the book!

Thank you for your support and all the encouraging messages. We certainly appreciate the prayers and thoughts.

Have a wonderful fall weekend and cheer for the CDH Raiders tonight as they take on the Woodbury Royals!

Love and Blessings,
Rachel/Mama
"Ma Perez"
________________________________________
Hey Everyone!!

Maryah here!! I am at school right now and have a little bit of free time on the computers so I thought I would just say hey!!

I am so excited that my scans are still clear...GO NED!! haha

As my mom wrote above this weekend I will be enjoying the homecoming football game tonight and the homecoming dance tomorrow with my two cousins Kaitlyn and Dorian!! I am very excited and cannot wait for the big Raiders game!!!!

I hope you all have a fabulous weekend and I will try my best to keep on top of the journals with my new busy schedule and all!! All my love and God Bless!!!

~Maryah
_____________________________________

Guys!
Many of you know for the last few years I've wanted to do a photo shoot with Maryah with her bald head and have the tagline read "BOLD is beautiful". We haven't done it yet. But check out this woman who did a photo shoot with Kenneth Cole. She has the same spirit as Maryah. Go to her website at baldisbeautiful.org . Her name is Sharon and she's an inspiration...

Time to celebrate the good news from her scans!
Love to all and God bless,
Zach/Dad/"Ringman"

Thursday, September 4, 2008 10:39 AM CDT

*****CHILDHOOD CANCER AWARENESS MONTH*****
**SEE THE BOTTOM OF MY ENTRY FOR IMPORTANT INFORMATION**

Good Morning!

What a beautiful crisp morning! I so enjoy the fall, it is my favorite season. Changing leaves, crisp mornings, fall air, jeans and a sweater, kids starting a fresh school year! It's all just so awesome!

Maryah began her first year at CDH on August 25th. She is acclamating well and enjoying herself. I think she is enjoying being a high-school student!

We are preparing for dance to gear up next week and getting hectic schedules on a routine again! I don't know what I would do without some sort of chaos in my life...having five kids and now a puppy brings lots of it but I think life would be fairly dull without it!

Maryah will be having PET/CT scans done on September 11th to make sure we are still all clear. Dr. Weigel wants to keep close tabs on Maryah so if anything comes up we catch it early on and get her involved in one of the open trials. We are praying that there is no need however! I will update you with results by next Friday. Dr. Weigel is very good about getting us results quickly!

I wanted to make you aware of the fact that it is CHILDOOD CANCER AWARENESS MONTH. In light of this there is some information that was sent to me that I would like to share and some directions for you to help raise money (without even opening your wallet) for research.

Here is the excerpt I was sent that I will pass on through this site and through my e-mail address book. I hope you will copy and paste the information and send it to everyone you know:

Help raise funds for Pediatric Cancer Research without opening your wallet.

September has been designated as Childhood Cancer Awareness Month. HopeKids is proud to announce they are commemorating this month by partnering with Children's Cancer Research Fund in an interactive web campaign titled CompleteTheCure. The goal of the campaign is to bring awareness to the childhood cancer experience and the progress and the challenges.

CompleteTheCure.com will feature six short video clips about childhood cancer. For each video clip viewed, a corporate sponsor will make a donation in support of pediatric cancer research. The more times the videos are viewed, the more funds that will be raised to help advance promising childhood cancer research. You can visit CompletetheCure.com, watch the videos and watch the money add up that will go to research.

*****Mark this as your home page and watch the clips daily this month!
*****Send this info to everyone you know
*****Put the info on your own CB sites or any other site you host!

Thank you, as always for your support and caring. We are ever grateful for your continued messages, prayers, and presence in our lives!

Love and Blessings,
Rachel/Mama
"Ma Perez"

Monday, August 18, 2008 4:31 PM CDT

Although I added a new journal entry just a little while ago...I thought this one to be more important. I want to make sure and get information out in support of the new license plates that Brooke, Shelley and Megan are working to get out in MN. Please read the following blurp taken from Aleena's website and help support this very worthy effort:

Our next venture is turning our thoughts and hopes for the license plates into a reality. Any help we can get is very welcomed and much appreciated. Please help by forwarding the word on to everyone you know.

LICENSE PLATE AND BILL INFO:
Some new information that we need in addition to everyone sending a letter to their Representative and Senator is for anyone who is really interested in purchasing these license plates once they are made, to email me with a confirmation that you would purchase. You are not purchasing at this time. This is just to help us get an idea of how many people will be willing to buy them once they are made and gives us the backup we need to show the people who need to see it, how this will do and just how many people care about this cause and are willing to help. Please email me at the address at the bottom of this page with your response! Also please forward this on to everyone you know and ask them to do the same.
We need ANYONE and EVERYONE in the state of Minnesota to contact their local Representative and Senator and ask them to SUPPORT our bill!! This can be done by email or snail mail which ever you have access to. You need to go on the website and you can actually type in your zip code and it will show you who your Representative and Senator are!
In your email you need to put "SUPPORT PEDIATRIC CANCER LICENSE PLATES" in the subject line. And in the body of the message you send you need to put the Bill # and ask them to support and CO-AUTHOR the bill. Any personal stories of how childhood cancer has affected you or your family send a much harder punch!

****BILL INFORMATION****
BILL # SF3834

WEBSITE ADDRESS FOR THE BILL: https://www.revisor.leg.state.mn.us/revisor/pages/search_status/status_detail.php?b=Senate&f=SF3834&ssn=0&y=2008

WEB ADDRESS TO FIND YOUR REPRESENTATIVE AND SENATOR:
www.house.leg.state.mn.us/

This takes you right to the Minnesota Legislative site. Here you can find your Rep. and Sen. and email them directly. PLEASE take the time to do this. This will help tremendously in making our dream to help fight Childhood Cancer!!

Monday, August 18, 2008 3:15 PM CDT

Good Afternoon,

Just getting back into the swing of working this week after Maryah and I spent the most of last week house training our new puppy...who by the way is still not quite "getting it". Oh well...she is still a baby!

As you saw on the previous entry the Neuro Radiologist gave the final "all clear" on the CT scan. Anything they could see on the skull was residual to radiation therapy and her previous surgery to resect the tumor in her skull back in 2005. They think all looks good.

Tonight Maryah is babysitting for Angie. She is already working to save money for all the fun high school events that will be coming around the corner very soon!

With her uniform pressed and ready to go she is all ready to begin her freshman year at Cretin-Derham Hall next week! She enjoyed her weekend at Auntie Jo and Uncle James' cabin thoroughly and is ready to get started now!

I'm so excited that things are going along smoothly and continue to pray that it will go along like this for good!

It is always such a blessing when Maryah is healthy and happy and able to enjoy life to the fullest with no interference or road blocks. It helps all of us realize our goals and look ahead to the future.

As I look ahead into the future I realize that likely I will continue to pursue a career in the Health Care field because of all that I have learned and my desire to keep helping those that struggle with cancer. It will be extreme change from Human Resources/Employment Law which I love but I am excited to look at all my possibilities for Nurse Management or Nurse Practitioner. Thankfully my employment in the health care industry has prepared me for the journey ahead. It's finally time to jump in and take advantage of all of the medical background this adventure has brought my way! Maryah intends to be an Oncology Nurse or Nurse Practitioner as well so maybe we will make it a family business!

There is so much to look forward to and I thank God every day for all of our blessings. It is sometimes hard to look at the wonderful things that come from such struggle but all that has happened has gotten us to where we are today. Maryah is going to be a freshman at an excellent high school and has become a strong, self sufficient, caring and empathetic champion, Morgan has learned so much about caring for others and still being strong in adverse times. She will go far with her loving ways and ability to hold a conversation about anything! She keeps us entertained.
Zach is ready to finish his degree and pursue his advanced degrees and pursue his many goals to help others.

We are all in a better place as hard as that might seem to imagine some days! I am proud of all of our family members, all of us have pulled together and found the best parts of ourselves and made them even better! We will continue to thrive whatever this adventure might bring.

With the love and support of all of those out there we have made it even further! Thank you for always supporting, always praying, and always caring for us! You have helped to mold our family and pave our road as well! You should feel proud and joyful as well!

I look forward to future updates that are nothing but positive! As Zach says in the synopsis above...in our quiet times we pray for each of you.

Love and Blessings,
Rachel/Mama
(Ma Perez)

Thursday, August 14, 2008 6:31 PM CDT

Good Evening,

The appointment for Maryah's CT scan went well today. Dr. Weigel feels very confident with the preliminary Radiologist's report that there is nothing on her skull to worry about. She is however having a neurological Radiologist take a second look just to get a final "ok" on the scan. She felt the exam was just fine and that Maryah may have had an infected hair folicle as her hair has just started to grow back. Apparently this is common in people going through regrowth after chemo.

I expect that we will get an "all clear" from the neuro rad too!

Maryah is off to the cabin for the weekend with Auntie Jo and Uncle James for a weekend of R&R. Well deserved I might add since she is constantly helping me around the house with everything from dinner, dishes, watching Nick, helping her siblings and now helping to train and watch out for the new puppy! She's an amazing girl and she deserves a nice vacation from all life's challenges!

Today Maryah and I unfortunately witnessed a very tragic accident on Interstate 94 near Interstate 35E that looked to have ended in a fatality and as we drove past we offered up a prayer for the man who lost his life as well as his family and friends. We ask that you do the same.

Thank you for your support and love we are so happy to have good news to report!

Love and Blessings,

Rachel/Mama
(Ma Perez)

****UPDATE - AUGUST 15, 2008 2:37pm****

Dr. Weigel just called to tell me that the Neuro Radiologist gave the "all clear". There is no abnormalities on Maryah's skull. Still cancer free!!!!

Wednesday, August 13, 2008 6:45 PM CDT

Good Evening,

We are enjoying our warm summer days and cooler summer evenings and mornings.

We have a new addition to our crazy family of seven making us a family of eight...her name is Isabel or "Izzie" for short and she is a miniature beagle puppy!

The kids are really enjoying her and although I think she is just as cute as a button and loveable as can be she is most definately stubborn and challenging as well!

After spending every waking moment training her since she arrived home last Friday evening I am finally returning to the world of work and adults (not puppies)! Honestly I'm looking forward to it.

Tomorrow afternoon will take us to the U of M where Maryah will have a CT scan of her head. She recently developed a bump on the back of her skull that was not captured in the PET/CT scan. We will meet immediately after the CT with Dr. Weigel to get results. I will know exactly what we are looking at by tomorrow evening and will update ASAP!

We hope that you are enjoying these last days of summer. It sure has flown by and as we approach the beginning of school it becomes all to much of a reality that winter is just around the corner again...UGH!

Thank you again as always for checking in and the constant prayers and support. We are ever grateful!

Love and Blessings,
Rachel/Mama

(or as Maryah so lovingly refers to me now Ma Perez)

Tuesday, August 5, 2008 12:14 AM CDT

Just 4 more days until Relay For Life South Saint Paul!!!

Join the DDs FROGS at Lincoln Elementary School in South St. Paul for Relay For Life!

The DDs FROGS have been working hard to raise money for the American Cancer Society's Relay for Life South St. Paul.

This is an event that Maryah has participated in for the past two years with the DDs FROGS!

It is sure to be a fun-filled evening and night with all of the dancers and families walking the track for a cause!

Friday night you will find us along side the FROGS for a special event!

Join us!

Love and Blessings,
Rachel/Mama

Monday, July 28, 2008 4:21 PM CDT

In all my life I have never known or had a desire to learn medical terminology or medical facts, or cancer research facts, almost five years ago Zach, Maryah, Elaine and many of us fighting in this battle had to learn a whole new vocabulary describing all things cancer! Do you want to know the most incredible acronym and disease terminology I have ever learned?

NED

It means NO EVIDENCE OF DISEASE!!!!!!!!!!!! It means that my beautiful, heroic, strong, dedicated, loving, inspirtional, AMAZING daughter has NO EVIDENCE OF DISEASE!!!!

The cancer has left the building! Maryah has kicked cancer's ass yet again and we now pray that this time it is for good! Maybe the cancer finally sees just how determined this young woman is, just how faithful and beautiful she is and just what a full life she has ahead with goals and aspirations to help others and make life easier for others with cancer! Maybe just maybe this time the beast will understand it has not won and walk away from this battle!

NED

Learn it, love it and enjoy it with us! Today we celebrate with GUSTO!

Maryah will be monitored at the U of M each 6-8 weeks to insure we are still on the right track and Dr. Weigel's message was "God forbid, if we should have to intervene again there are LOTS of options for Maryah". We will be watching out over her but having faith that GOD is good!

Love and Blessings,
Rachel/Mama

Thursday, July 24, 2008 6:58 PM CDT

Good Evening!

I thought I would put an update on the site tonight while the information we received today was still fresh in my mind.

Zach, Elaine and I took Maryah to visit with Dr. Brenda Weigel at the U of M this afternoon. The visit was refreshing and informative.
There was a bundle of good information that she provided us on different options that are available for Maryah. We discussed some clinical trials that are open, some that are not open but could come open soon as well as some commercially available options to treat Maryah.

We have decided that we are all a little confused with the current level of disease that Maryah has in her body. We are unsure there is active disease and so we need to do a PET/CT scan tomorrow to make that determination.

After hearing all of our current options Zach, Maryah and I decided on a clinical trial that offers an IGF-Antibody that is given every other week through an IV infusion that takes approximately one hour. She will be monitored throughout the process and if she were to develop active disease during the antibody treatment we would go to our next option.
The antibody treatment has no side effects like chemo and Maryah should be able to be normally active, feel well and even possibly go ahead with surgery to put a new prosthesis in her leg.
This particular antibody was initially tested on dogs who had osteosarcoma and it was successful it has also been successful in a handful of people in clearing up any sign of disease. This is a strong positive and we are excited to get started.

If the PET/CT shows no evidence of disease (NED) tomorrow we will not begin antibody treatment and instead stop doing chemo, stop treatment all together to give Maryah's body a break and then keep monitoring with an option for the antibody treatment later if needed.

This is a new piece of the journey we are embarking on and we will not be treating at St. Paul Childrens for this leg of the journey. Dr. Weigel and the other staff members at the U of M are wonderful and we are looking forward to getting to know them and working with them closely as we work toward a cure for Maryah.

I can say most definately that the optimism that was shown today was AMAZING and it took a wieght off of my shoulders that I was unsure would ever go away again. I feel very light and happy again.

I hope to have more information no later than Monday after we get PET/CT results. I will update you with the definitive plan after I hear.

Thanks for following, loving and supporting our family! Maryah is doing well, she is happy and feeling optimistic herself!

Love and Blessings,
Rachel/Mama

Tuesday, July 22, 2008 9:07 AM CDT

Good Morning,

Another beautiful day in Cottage Grove, MN! The sun is shining, the sound of lawn mowers running, the smell of fresh cut grass. I love the summertime...almost as much as the fall!

Rein In Sarcoma was EXCELLENT! The turnout was amazing and my hope is that the dollars they brought in are equally as amazing. This was the biggest turn out yet that I can recall. The girls had lots of fun as did Nicholas on his very first carousel ride. He was all smiles!

This week we have made the decision to hold off on chemo therapy to give us the opportunity to go and meet with Dr. Brenda Weigel at the U of M. We will meet with her on Thursday afternoon to discuss the options of clinical trials that are currently available for Ewing's Patients. We will determine if Maryah is eligible and then go from there. She has spoken with Dr. Slomiany, reviewed Maryah's Volumes of Medical Charts and is ready to arm us with all the information we need. We had the opportunity to meet her last night on a much more informal basis. She is a sweet woman and really a breath of fresh air. More to come on this note...

On our way now to go get Tori from Little Falls and return my niece Kaitlyn to Little Falls! My brother and I swapped kids so they could play with the cousins their own age! It was fun for all.

So...it's time to hit the road. I will be back with an update after our appointment on Thursday!

Love and Blessings,
Rachel/Mama

Monday, July 14, 2008 11:00 AM CDT

Good Morning! What a beautiful July morning in Minnesota!

If you haven't had a chance to catch up on journal entries there is some good news about high school and some other news about scans to read if you would like to go to "read journal history" up top!

This journal entry is a story...

Six years ago this time of year Nuna began taking Maryah and Morgan to Cafesjian's Carousel at Como park. This is the old carousel that was at the MN State Fair Grounds that I would ride on over and over again with my Dad each year when we would go to the State Fair for the day! I love this carousel and so do my girls. It has been refurbished and brought to Como Park. So as a tradition my girls would venture to Como with Nuna and as a special treat they would ride the carousel. Sometime in July that year Nuna called me on the phone and told me about a fundraiser that a friend brought to her attention that would be going on at Como. If you made a donation you could have unlimited rides on the carousel. This friend knowing Elaine and the girls traditionally did this together thought it a great idea and so did we...

That evening we all went to the park and made our donation to the Sarcoma research fund with very little knowledge of what we were donating to and rode the carousel. That evening as we walked back to our cars Maryah and Nuna ran quite a distance and then made plans to begin running together around Como lake...

October came and Maryah complained of leg pain, "it's just growing pains" we would tell her. November came with a few more complaints, December came and brought Christmas and Christmas break from school as well as more consistent complaints of this "leg pain".

January 5th after a routine trip for an x-ray to the pediatrician, an MRI and a bone biopsy (along with so much angst and heartache) we learned that Maryah had Ewing's Sarcoma. She had a large tumor in her right femur, thus the persistant pain. Maryah would not return to 4th grade after Christmas break.

The following months brought a regimen of chemo therapy, small surgeries, medications, nausea, fear, anxiety, a large and painful surgery to remove the femur and knee and then July came and we again participated in the fundraiser at Como Park. This year we not only particpated because we wanted to ride the carousel, this year we participated because Maryah was a Sarcoma patient. She sat amongst others that were patients, survivors and the many others who have been so deeply touched by Sarcoma. The irony is almost unbelievable.

Today Maryah is still a Sarcoma patient and a survivor of five years. Nuna has been working on the Board for Rein In Sarcoma the fundraising group that holds the annual event I've mentioned and has help raise hundreds of thousands of dollars to fund Sarcoma research and has helped raise awareness.

This year Rein In Sarcoma will participate with the International Sarcoma Awareness week and in honor we will again be attending and Maryah hosting the picnic, riding the carousel and helping raise money for a cause that so deeply and unexpectedly touched our family.

Please join us at the annual REIN IN SARCOMA Party In the Park!!!! We would love to see you there and this is a very worthy cause. It's a fun filled night and a night to just live in the moment and enjoy how far we've come and the support that surrounds us daily.

Visit www.reininsarcoma.org to register for the picnic and get details of the evening! You may also click on the link below to get more information. We look forward to seeing you there!

Love and Blessings,
Rachel/Mama
_______________________________________

July 14, 2008

Hey everyone!

Maryah here! I am spending the day at Angie's today with all the little munchkins and of course my super cute baby brother! On Thursday we will be celebrating little Nick's 1st birthday (my brother)! I am very excited...I love watching all of my little siblings grow up...that is the best part of being a big sissy!
As my mom wrote in her last journal they saw another spot on my collar bone…not the news that I was hoping for but I believe in God and I know that everything happens for a reason.
This week and the beginning of next week is going to be a busy fun filled week! On Thursday evening I am taking of to go out to my aunty Jo Jo's house, then on Saturday we have our Emerson family reunion, and on Monday we have Rein In Sarcoma!
Well I am going to go bake some chocolate chip cookies!...yummm:) I hope you all have a good week! All my love and God Bless!

~Maryah/The champ!!

Friday, July 11, 2008 1:01 PM CDT

Hello again!

If you are wondering about the fabulous purple and gold color scheme check out the last journal entry regarding our good news! Maryah has received a scholarship to Cretin-Derham Hall where her father and I went to school back in the day.

Maryah had a bone scan on Wednesday morning and yesterday late afternoon we received word from one of the Hem/Onc docs that she does have a small "spot" on her collar bone that was not previously there. We really don't know much more than that because unfortunately her primary Doc, Dr. Slomiany is out of town and won't return until next week.

At the point that we talk to him Zach and I have some more questions such as:

1) Are the other "spots" shrinking or still the same?

2) Is the current chemo regimen working or should we look at possibly making some changes in treatment?

3) Is this "spot" on her collar bone tumor or not?

If we need to look at other options the clinical trial at the U of M is still open and if Maryah has a biopsy of one of the spots she would be eligible. It might be something to look deeper into. We will have to discuss in detail with Dr. Slomiany.

We always have hope that does not change we just may need to tweek our plans a bit to keep Maryah going in the right direction.

Thank you for checking in. We will keep you updated as we learn more.

Keep cool on this very hot day! Maryah I'm sure is swimming with her sisters in the cool lake at her Aunt Jannie and Uncle Jim's cabin up North. She's having a great summer with lots of fun things to do! We are looking forward to our Emerson family picnic at Square Lake in a couple of weeks where we always enjoy the day with family and good food and splashing in the lake.

Enjoy your weekend!

Love and Blessings,
Rachel/Mama

Tuesday, July 8, 2008 11:05 AM CDT

Today we received great news from Cretin-Derham Hall...they accepted our request for a scholarship for Maryah!

Maryah cheered when she heard the news. In fact, she was receiving chemo when we told her and she hasn't stopped smiling since because she is so happy. She can't wait to get her uniform and supplies. This news floored us. We are very humbled and thankful for this amazing gift from CDH.

For those outside of the state and country, Cretin-Derham Hall is a private Catholic school where faith, education, ethics, and good works are intertwined daily. CDH is even better than *Benilde-St. Margaret's High School. My family's priest from 25 years ago - Father John Forliti - is the Chaplain now and so this will a homecoming for us.

Speaking of homecoming...we look forward to all the school dances and events. Note to the boys: I know the Principle, Priest, Brother Michael Lee, Brother Michael Rivers, many teachers, the layout of the school, Maryah's crazy Godfather "Uncle Goo-Goo" and his mother Mrs. Groeller who both work there, and I live within a mile of school so I expect you to respect her and for you to be on your best behavior. Note to Maryah: Learn from your parents...and with that said, "go get 'em girl".

CDH is where Maryah's mother and I went to high school and so Maryah will be walking the halls of faith, family, friends, and familiarity.

Thank you CDH! Here she comes!
God bless,
Zach...Maryah's Dad/Ringman

*That was a shot at my Godfather Uncle Bob who, upon hearing the name Cretin-Derham Hall, always says, "do you know what 'cretin' means?" then proceeds to bore the crowd with a memorized yet forgettable definition. He is the President of Benilde and so there is a friendly rivalry.
______________________________________
July 8th - 12:14 p.m.

Way to go CDH!!!! I love the colors Zach...nice job! Oh and by the way Uncle Bob...Cretin-Derham Hall is most definately the best Private Catholic in MN! :) Love ya!

What an honor it is to know that we can send Maryah to the school we once walked the halls of. I am so proud of the young lady Maryah has become and can't wait to see just how much more she will be able to accomplish with the strong academics and faith that is exemplified at CDH every day!

Awesome news finally! As Nuna said today it's about time we got some GOOD financial news. We are so blessed and humbled by those that continue to help us through this journey. Thank you again!

Love and Blessings,
Rachel/Mama

Thursday, July 3, 2008 7:33 AM CDT

HAPPY INDEPENDANCE DAY!

Another early morning where I can actually catch a few moments to update the site. Nicholas is playing contently for a few moments and Maryah and Morgan are cleaning up their room before we get going for the day.

The mornings are always my favorite time of day. The sun beaming through the big window, the early morning chill, the smell of dew and warming sun beginning to deteriorate the signs of the night.

Today we get ready for our busy weekend and start our day with home care getting chemo for the day. We will venture off to Nuna's house in just about an hour to not only get chemo under wraps but celebrate her big 60th birthday! One of the best gifts that Nuna has given us is the ability for Zach and I to continue to work! She has virtually taken on the primary care giver role for Maryah during the days so we can continue to make a living for families. It is the greatest gift a grandmother could give. The second greatest gift is that she has been an AMAZING mother-in-law to me. She has put me in my place when I've needed it, hugged and comforted me just as much and more, sat and talked with me through all of lifes day-to-day things as well as the curve balls life has brought my way. We are blessed to have her be such a big part of our lives! Happy Birthday Mom!

We will be busy baking, cooking, making salads, beer boiling brats and packing up our gear to head up North tomorrow morning. As soon as Maryah finishes chemo with home care we will be taking off! It should be an interesting weekend since it will be the first time we've had ALL of our five kids at the camper together. Not much space for such a big family! It will be that much more fun though! The girls love to bring their ghost story books, I make them their cocoa in the travel mugs, they get a blanket and sit outside in the hammock and scare the heck out of eachother! Oh! To be that young again!

Tomorrow celebrates not only our greatest National holiday but Maryah's great Grandfather "Chief" otherwise known as John Heddens Tift birthday. He was the most patriotic man I have ever encountered and we will be thinking of him tomorrow as we celebrate the day. We certainly miss him very much!

On Wednesday next week Maryah will have a bone scan so we can see how the tumors are progressing (praying they have shrunk or are gone completely) and also to determine what's going on with some new leg pain Maryah is experiencing.

Next Thursday we will join the Moreno family to release baloons for Aleena's birthday on the 9th. For those of you that didn't follow her story she did gain her angel wings just over a month ago. We will be releasing purple balloons in honor of Aleena's birthday. You can get details by going to www.caringbridge.org/mn/aleena.

From our family to yours, Happy 4th of July! Have a safe and fun weekend and we will keep you updated as to next weeks scan results. Thanks for checking in.

Love and Blessings,

Rachel/Mama

P.S. I have a prayer request for Megs and Will Roth, they lost their daughter Tori last year and have since had a new addition to their family. Just last Saturday their son, Frankie was born into a wonderful family. He will be undergoing some surgery this Saturday and I would love if my fabulous prayer team could take good care of him and his family as well! www.caringbridge.org/visit/frankieroth. Thanks!

Sunday, June 29, 2008 8:48 AM CDT

Hello again!

What a wonderful weekend we've had, even with the rain it's been beautiful. Blazing hot Friday to cool and rainy on Saturday and now a cooler, sunny day today! I'm sure it's going to warm up later!

Last night Maryah enjoyed a Twins game with the Hope Kids group. Dad took the gang to the game and it sounds like they had a ball! Thanks Hope Kids for a fun event. It was the first time Maryah was able to participate and it was a great experience.

Today will be a nice day to recoup before going back to work for a long week and before beginning this next round of chemo. We have a nice holiday coming this week so that makes the week go by fast. This weekend we will be taking the kids up North for a short get away!

Hope you all have a terrific 4th! As always we are so glad you stop by and leave messages! It's always nice to know you are there!

By the way if you haven't left a message recently you will find out when you do that there is an extra meausure of protection each time you enter so we can avoid the links that were posted recently! Thanks for your patience.

Love and Blessings,
Rachel/Mama

Sunday, June 29, 2008 8:48 AM CDT

Tuesday, June 24, 2008 7:34 PM CDT

Good Evening,

I have come to the site tonight after receiving a several phone calls stating that there was links in the guestbook that someone had entered to pornographic sites.

I assure you I do not know what it takes for some sick and demented individual to put this information on Maryah's site. I would hate to have to block visitors from this site with a password since this is a great source of support for Maryah and our family but it may become necessary. If that occurs I will notify friends and family of the password so you will be able to continue and access the site.

Currently we are working with Caring Bridge and other authorities to determine where these entries came from. Thankfully they have the resources to trace most guestbook entries.

I apologize for any trouble this may have caused and I hope that you and your kids will feel comfortable continuing to come to this site to follow Maryah's journey. It is a sad day when parents and children who struggle and fight cancer have to fight the jerks who make such crappy decisions to post information as they have.

It is my priority to follow this through until those that have posted this information are caught and that this information stops being posted on this or any other site. You have my word.

Thank you for stopping by. Maryah will begin a new round of chemo next week and in the mean time she is enjoying her summer break. Although not always feeling the best she continues to put on a smile and encourage us all! HOPE is something unbeatable.

Love and Blessings,
Rachel/Mama

Thursday, June 12, 2008 3:10 PM CDT

Hey Everyone!!

Maryah here! Well I have not updated in a while but even though school is out I have still been really busy these last few weeks with being in the hospital, 8th grade graduation, and my Mom and Dan's wedding!!

As my mom had wrote in her past journals I was in the hospital and had lost a lot of weight but am just about feeling back to normal which is really nice so that I can enjoy my summer hanging out with my friends and not feeling so bad!:)

This weekend my Mom and Dan are going on there honey moon and Mr. Nick will be spending the weekend out at my aunty Jo's...I have to admit she is very brave for doing this! I will also be joining her this weekend to give her an extra hand knowing that my cute little brother can sometimes be a bit of a handle!

I hope everyone enjoys their weekend and HAPPY FATHERS DAY to all the Dads!!!!!

All my love and God Bless!

~Maryah/ THE CHAMP!

Tuesday, June 10, 2008 6:57 AM CDT

Good Morning!

It's a brand new week and we officially start our first week as a family (oficially).

Maryah begins a new round of chemo this week and most of the kids are out of school for the summer!

We had a lovely little wedding on Saturday and as you can see in the picture book Megan posted some pictures and the girls looked just stunning. We all had a wonderful time and the day was a blessing.

Maryah was feeling so good last week it was hard to believe she is the same gal that was laid up in the hospital last week feeling so crummy!

She went in to the clinic on Thursday last week and she had put some wieght back on with the help of an appetite stimulant. She was happy and jumping around and excited for the wedding. It was so nice to have my girl back.

So, with all the big events, graduation, wedding, etc behind us we can begin our summer and maybe even relax! It's been a long time since we could just enjoy a summer season and spend time together as a family.

We hope that you enjoy your summer and each of your families. We will keep updating as we go through chemo. The plan is to continue as long as it continues to work for about a year. If something should change we will let you know right away!

Love and Blessings,
Rachel/Mama

Wednesday, June 4, 2008 8:36 AM CDT

Good Morning!

Well I am happpy...no ecstatic to report that Miss M is feeling right back to her perky, peppy self. She has regained her sass and spunk! I LOVE it!!!

She came to work with me yesterday and she is at home today cleaning the house for me (as a wedding gift). She is such a big help!

She is going to clinic tomorrow to get counts done and then get wieghed. The doc last week prescribed an appetite stimulant and it is working nicely. She is eating and drinking more. The new anti-nausea drug is working well to combat nausea too. Of course it helps that we are taking another week off chemo this week so she can recoup.

I am so glad she is feeling well and will be able to enjoy herself at the wedding this weekend!

Love and Blessings,
Rachel/Mama

Thursday, May 29, 2008 2:24 PM CDT

Good Afternoon!

We are in much better shape today and as I type from the Family Resource Room at Children's Maryah is in her room spunky and perky as usual! She is happy and joking and although she doesn't feel 100% yet she is getting there. I am thrilled!

We will be at graduation tomorrow night with bells on! She will be enjoying herself and hopefully feeling MUCH better!

Thank you for all of your prayers and love! We are ecstatic that this has all been a temporary road bump.

Maryah had a head CT this morning and we were given an "all clear" with that. No tumors or anything to worry about causing dizziness. All tests say things are okay she was/is just severely dehydrated and malnurished. She hasn't eaten in so long and has lost so much weight that she just needs the nourishment and energy that food will bring. She did eat part of a Subway sandwich I brought for her this afternoon and of all things ate crab legs and part of a Whopper last night! Wierd combo but she's eating!

Well...I am off to get back to the girl. We are looking forward to our little wedding next week and even more now so that Maryah is doing better.

Thank you again for your concentrated prayers!

Love and Blessings,
Rachel/Mama

Wednesday, May 28, 2008 11:40 AM CDT

Good Morning!

I am just throwing a prayer request out there for Maryah. She went to clinic this morning and they are planning to admit her to the Hotel 4200 for some R&R. She needs to get nausea, dizziness, vomiting, dehydration, etc. under control and this is the best way to do it.

Although we wish the timing was better we hope that she will be well enough to be out soon and make it to her 8th grade graduation! Equally we are hoping that she will feel GREAT for the wedding next Saturday!

It has been hard this last few weeks to see Maryah so out of energy, out of breath and just in a general state of malaize. She has been so spunky and fun even throughout her chemo these past months that this is a turn we weren't expecting.

We hope that this is a temporary turn and we will keep you updated. We have no results from Tuesday's x-rays but will get those to you ASAP.

Please keep praying for my baby girl. She needs the prayers and the healing. I know she will get everything she needs from the people who take care of her best at Children's.

Thank you and I will keep you updated as we know more!

Love and Blessings,
Rachel/Mama

Monday, May 19, 2008 6:41 PM CDT

Good Evening!

Well no x-rays today! They are now scheduled for next Tuesday. The unfortunate part of being on this journey for so long is that sometimes you encounter hospital folks that are a little more complacent then others. The x-rays never got scheduled as they were supposed to and so now we must wait.
Maryah started week two of this round of chemo and she is feeling rather nauseated. She has not been eating very much unfortunately and has lost a considerable amount of wieght! I told her tonight she could have a Big Mac from McD's if she wanted one! I told her that it wouldn't hurt to have it or some peanut butter or chicken or other protein filled foods! She is eating a fruit roll up as we speak and that seems to be settling along with the chicken, corn and potatoes we had for dinner! Hopefully she's on the upswing and will be feeling better in no time.
She is finishing up her last seven days of school at IHM-St.Luke's where she will graduate from eighth grade next Friday night. Then it's off to CDH for HIGH SCHOOL!

Well before that I guess we have a few things to do this summer like HAVE A BLAST!!!!

Lot's of fun things to do this summer and I'm sure you'll be able to find Ry and her friends hangin' by here by the pool and chillaxin' as she says!

Well...I will update when we finally get those x-ray results.

Love and Blessings,
Rachel/Mama
________________________________________

FYI - Last night a Red Sox pitcher - a young man who battled through cancer just two years ago - pitched a no-hitter! Truly inspiring.
Dad/Ringman

Tuesday, May 13, 2008 6:47 PM CDT

Good Evening,

Well Maryah had a very fun week of birthday festivities. The celebrations started with Dad and Abbey and Abbey's family and Dad's famous chicken divan. Then it was on to Mom and Dan and all the sisters and Nick also celebrating with a special request dinner of chicken divan. Wednesday Maryah got a special Happy Birthday during dance rehearsal from all of her dance friends. Friday and Saturday brought the dance recital and then on to a very special SURPRISE birthday party organized and thrown by Megan, Kaitlyn and many of Maryah's other dance friends and their parents. Thank you to all of you who helped put together one heck of a fun slumber party.
So after all night of gabbing with the girls, laughing hysterically and eating yummy froggie cupcakes and other fun foods we celebrated Mother's Day by relaxing with some movies.

Maryah is moving back into school mode and chemo mode this week! She is beginning this new round of chemo and will also be having x-rays on Monday to determine what the "activity" is that they are seeing on the bone scan in the right arm and pelvis. Could be more tumors or nothing at all. I guess we deal with it when we know more!

Either way we are still in fight mode and we are just waiting to put the gloves back in the air and have another TKO.

Maryah is an exceptional young woman and I am a lucky woman to have such a special daughter (daughters). Thank you to all of you who help us day-in and day-out to make life work on so many levels! We are more appreciative than we could ever express in words!

Love and Blessings,
Rachel/Mama

P.S. See the picture book on the home page for some new fun pics of Maryah's surprise party on Saturday!

Wednesday, May 7, 2008 4:01 PM CDT

Good Afternoon!

I have been sitting all day reflecting on my memories of Maryah's birtday fourteen years ago! After a LONG labor and delivery Maryah was born and we couldn't have been happier at this little 7lb. 11oz little girl with JET BLACK hair and the most beautiful eyes you've ever seen!

The day was sunny and still a little crisp, the tulips and daffodils had started to bloom I remember. It was the perfect time of year. It was also the day before mother's day! My first mother's day couldn't have been more perfect!

Maryah had MANY visitors this day. My favorite was when Uncle "Goo Goo" (lovingly called this because he always made faces and said "goony goo goo" to Maryah as a baby) came by the hospital. Sam as the rest of us know him is Maryah's Godfather and he came into the hospital with about 25 helium filled baloons in a bouquet. Little did he know that you can't bring helium baloons into a hospital because the static electricity causes the fire alarms to go off. So needless to say the fire alarms went off, the fire trucks arrived and we "hid" our baloons in the bathroom! No harm done but he had to take the baloons with him!

After all the grandparents, aunties and uncles, friends and family had come through I remember sitting looking at my dark haired little princess and thinking "she will be something special" and that she is. She is the CHAMP! She is an inspiration to me. She is smart, funny, compassionate, giving, loving, considerate, thoughtful, kind to everyone, crazy, comfortable, cool, collected, graceful, beautiful, charming, stunning, confident and classy! I'm not sure that I covered everything but who would have ever thought before she came that I would be SO VERY BLESSED!

Thank you Miss Maryah Therese Emerson-Tift for making me a Mother, for teaching me grace under pressure, for reminding me that I always need to pray (especially in thanksgiving), for being my shining light, for giving of yourself, your time and your things at any given moment!

If I might go on...I would like to share a little something about my incredible daughter (so I am biased).
Every morning that Maryah is with me she wakes up (on her own), gets ready for the day, comes downstairs and takes her pills, then she is off to helping Morgan get breakfast, once she has done that she is downstairs to get Nick so I can finish getting ready for work. She entertains him, gets his coat on and makes sure he is ready to leave when I am. When all that is done and I am ready to leave she picks up my coffee, my purse and any other miscellaneous things I am bringing with me for the day and carries them out to the car with my keys. She unlocks the car and gets Mo in, gets all my things and her own into the car, gets in and starts the car for me and does this all so that we can leave by my requested time of 7 a.m. sharp! Can you ask for more?

I could go on and on about the rest of my blessings (Dan, Tori, Morgan, Libby, Nick and the rest of my family and friends but this gives you a small window into my life of beauty. I am grateful for everything we've been through. God has decided to work through our daughter to touch many (especially me) and I am forever grateful for that!

Happy Birthday Maryah! I love you with all of my heart!

Thank you all for reading and letting me go on and on!

Love and Blessings,
Rachel/Mama

Tuesday, May 6, 2008 6:03 PM CDT

Good Evening,

This the eve of Maryah's 14th birthday I remember that I was in labor 14 years ago today waiting patiently (well maybe not so patiently) for her to be born. It took us until 10:25 a.m. on May 7th for her to enter the world after 18 and a half hours of labor! Well worth every moment!

Maryah had her routine bone scan today which showed no real changes in the tumors (no smaller, no bigger). There is some "activity" in the right arm (where we are treating for Lymphodema) and the pelvis so we will get x-rays to see what's going on there. I am certain it is nothing to worry about.

Today has been day filled with good news and happy memories. Maryah and I shared breakfast at the Capital View Cafe in my old stomping grounds. After breakfast I drove her around the old neighborhood for a tour of the places I've played and spent some of my favorite childhood moments. We ended up at our old house on Englewood to check on things (it is still on the market) and we shared more memories.

It is a good day as we anticipate the big birthday tomorrow. I am in the midst of making my chicken divan for supper tonight and we will celebrate with an ice cream cake and all the girls home tonight. We decided to celebrate as a family tonight while all the girls are home together. I think Nick is anticipating one of his sisters sharing a little cake with him! He's being very cute in hopes that will win him some brownie points.

So...goodnight and thank you for checking in. We will update if there is any more news on the "activity".

Love and Blessings,
Rachel/Mama

Sunday, May 4, 2008 4:22 PM CDT

Hi and happy new week!

We begin this week with anticipation and excitement. Maryah will be 14 years old this week and she has so much to celebrate, we all do!

Maryah got to choose dinner from both Dad and Mom and wants us both to make Chicken Divan...well...Zach taught me how to make it but I've put my own secret recipe together based off of his original thoughts and I still think mine is better. Maryah will be her tactful self and tell us that we both made it "fabulous". I guess I have to give Zach the credit of teaching me to make such a yummy meal!

So along with two nice meals we will have some cake and ice cream and celebrate with family and friends this week. We also have dance recital this weekend so we have lots to do!

Maryah and Morgan were STUNNING in Nikki's wedding yesterday and both glowed with pride. I so enjoyed watching them have fun. I love watching Maryah be elegant and Morgan be so social. They bring me such pride!

It will be a fun week and we will be busy, busy, busy! We'll be getting new pics up ASAP from D.C. and the wedding.

I will be back to share website where you can view Nikki and Justin's wedding pictures online where you'll see LOTS of pics of Morgan and Ryah.

Have a GREAT week!

Love and Blessings,
Rachel/Mama

Monday, April 28, 2008 10:04 AM CDT

Good Morning!

It is the start of a new week. It was hard last week as each day we lost someone that we cared about about but we know that with each new day begins new life and renewed hope and joy.

We are starting a very busy month ahead and in fact it is going to be so busy Zach and I have decided that we will have to discuss schedules week-to-week in an effort to keep track of everything going on.

This week Maryah will meet with the folks at Sr.Kenny to treat the Lymphodema (or at least that's what we think it is) in her arm. Then both Maryah and Morgan are in their "Auntie" Nikki's wedding this Saturday so they have big plans for the rehearsal dinner on Thursday, nails on Friday, hair (or non-hair) appointments on Saturday morning right into the wedding at 3pm.

That will lead us right in to Maryah's 14th BIRTHDAY next Wednesday! I cannot believe I am the mother of a 14 year old! I also cannot believe how very lucky I am to have such an amazing, smart, classy, thoughtful, loving, helpful, compassionate, funny, beautiful 14 year old! One of our family traditions is that whomever is having a birthday gets to pick their favorite meal and I will prepare it. Maryah has picked her favorite Chicken Divan which she says I make the best (get over it Zach) because I have special secret ingredients that I use!

Although life will be busy it is good because it will make the time pass quickly until our little wedding in June when Dan and I have the girls stand up for us! Can't wait...it's getting closer and closer!

We hope that you will continue to pray for our friends and family after the loss of their loved ones. We also hope that each new day brings joy and peace to your lives and homes.

Thank you for continuing to leave messages and support. We always appreciate it. In the middle of the "normalcy" we are still battling cancer and it is a beast. It is scary and difficult and all I can say is I am ever so grateful to be taught the way by our brave and courageous warrior, our CHAMP!!!

Love and Blessings,
Rachel/Mama

Friday, April 25, 2008 12:51 AM CDT

Good Afternoon,

Sorry not better news but we have lost another friend. Aleena passed away yesterday morning. This week has been full of loss and even though there still seems hope and encouragement through all of it.

Please pray for Aleena's family. This will be a tough road for them and many adjustments to be made to resume some "normalcy". Hold them up!

Thanks for all of your prayers this week!

Love and Blessings,
Rachel/Mama

Wednesday, April 23, 2008 10:50 AM CDT

Congratulations Cari! We are proud of you!

There isn't much of an update with Miss M today. She is on day three of her 1st week of chemo. She is doing quite well. We are working on getting she and Mo ready for their "aunt" Nikki's wedding next weekend. They are both going to be in the wedding (although Mo thinks she's marrying Justin).

We wanted to take a minute to let you know of some of our family that need prayers right now in hopes that all of you out there that continue to follow our journey will lift them up in prayer.

Last night "Grandma" Lou died peacefully around 6p.m. This is Nikki's grandmother and was very dear to us. She was 81 years young and fiesty as ever. Pray for her daughter Caroline and son-in-law Gene and all her grandchildren and great grandchildren that they will find peace and comfort.

This morning Uncle Cliff passed as well. Connie and Cliff Pukaite are Great Aunt and Uncle to Maryah and Morgan and have been a large part of our lives. He has been battling bladder cancer for some time and it had metastisized. Suffering some other health issues he quietly passed on early this morning. His wife Connie will without a doubt feel his absense. Cliff was funny, good natured and loving, this is a great loss.

We a still praying for Aleena and her family as she is still hanging on but actively dying. This is a trying time and hard for this family. Please pray for them!

Thank you for following! We are grateful to have each of you with us ont this journey and we are more grateful to have a positive update on Maryah's current health.

Love and Blessings,
Rachel/Mama

Monday, April 21, 2008 10:18 AM CDT

Good Morning!

It is a little chilly at just 46 degrees in Boston right now!!! Cari checked in at the 5K mark of the Boston Marathon at 29 minutes and 34 seconds. Her projected finish time is 4 hours and 9 seconds.

I am sitting here on my day off with Nicholas and we are tracking her through the Marathon. I might not be standing at those check points but I am sitting here with Nick cheering each time we get some info on the tracking screen.

If you would like to track Cari too you can go to the Boston Marathon home page (just do a google search) and look for bib #22461 or last name Harsh. You can click on her and track her progress through the marathon.

Here's to you Cari! Here's to a cure for cancer!

We love you and are cheering all the way from MN!!! GO CARI!!!! GO DANA FARBER!!!!!!!!!!

Love and Blessings,
Rachel/Mama

Way to go Cari!!! Here is the info from the Boston Athletic Association where I have been tracking Cari's progress all day:

22461 Harsh, Cari G. 32 F Hopkinton MA USA
Checkpoints 5k 10k 15k 20k Half 25k 30k 35k 40k
0:29:34 0:59:25 1:30:04 2:01:30 2:07:57 2:33:28 3:08:11 3:44:33 4:20:16
Finish Start Time Offset Pace Projected Time Official Time Overall Gender Division
- 0:10:33 4:36:20 19038 7465 4148

We are SO proud of you!!! Wish we could be there to celebrate with you! CHEERS!!! You did it!!! Sending big hugs your way. Much excitement and cheering from MN!!!!
_______________________________________

Hey Everyone!! :)

I am back from D.C!!!! I had so much fun! Like my mom said in her past journal the first day we were there we walked close to 14 miles! My leg is a little sore today and I am very tired so I decided to take one extra day off of school and just rest!

Today I will be starting up chemo again! YAY!! I am so excited! haha (I am being VERYY sarcastic!)

Well I just wanted to stop by and say hello and let everybody know that I had a wonderful time in D.C!! I hope you all have a wonderful week and I will update again this week when I have some time! All my love and God Bless!

~Maryah/The Champ!

Saturday, April 19, 2008 10:29 AM CDT

Well...Maryah is home!!! She arrived later last night around 9:30 and called me at 10:00 sounding like she could fall asleep standing up.

I think she will be resting a lot this weekend and her updates will have to wait until she regains some energy!

I'm sure we'll be hearing lots of stories about what she saw and learned.

Please pray for our friend Aleena Moreno today. Her time has come nearer to go "home" and her family is preparing for that. I ask that you keep Shelley, Leo and their children in your specific prayers today that the Lord might wrap his arms around this family in a time of such uncertainty, angst and mourning.

Love and Blessings,
Rachel/Mama

Thursday, April 17, 2008 10:50 AM CDT

Good Morning!

I heard from Maryah last night and she is having a ball!!! She has seen so much. They may attend a Papal mass with the Pope being in D.C. today. I think that is pretty cool. I had a dream once when Maryah was a young girl and she had an audience with the Pope...not that she will now but it was a cool dream and she will be that much closer.

After talking to Michelle (Mom and Chaperone) and hearing from Maryah that she walked 14 miles the first day I was glad to hear that Michelle got her a wheelchair to use. She will need it over the next two days to keep up with the group and not tire out. She is stubborn like me and doesn't want it but she does need it.

She will likely spend a good deal of the weekend sleeping to catch up on energy but it will have been well worth it! It makes me so happy to hear her so excited about all she is seeing and doing!

One more thing before I sign off...it is just a few short days before our cousin Cariann runs the Boston Marathon again to raise money for cancer research at Dana Farber in Boston!
Cari has worked SO hard to prepare for this after having a baby and going through her own struggles having her son Kyle! She is just dollars away from reaching her goal. If anyone is able and interested in making a donation in honor of Miss M please visit her site at:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=225656&supId=98443599

We won't get the opportunity to be in Boston at the finish line this time but we will be rooting Cari on from good old Minnesota!!! Go Cari!!! I hope you hear our voices across the states!!!

Love and Blessings,
Rachel/Mama

Tuesday, April 15, 2008 8:00 AM CDT

Good Morning!

Well...she is finally on her way. Flying overhead right now! She spent the night with good friends Addie and Mom, Michelle (thanks guys). She got through security after about 1/2 hour she said. I have gotten several text messages and one phone call this morning.

Maryah is expressing her independence a great deal. She called me over coffee with her friend from Dunn Brothers. She is excited about sitting in a window seat on the plane and states her leg is really "just fine" (that was a concern).

I am proud of Maryah and rejoice for her independence for lots of reasons (thanks for the call yesterday Auntie Ginny). I am really happy for Maryah. I know she will enjoy her trip. Although I am a bit nervous about her being far away I am equally as excited that she gets to be that far away.

I'm sure she'll have lots to update after she gets back and spends some time resting.

Love and Blessings,
Rachel/Mama

Friday, April 11, 2008 9:36 AM CDT

Good Morning!

What to think about this weather! Some days I have to wonder why we still live in MN? This is a little ridiculous. Last night there was thunder and lightning and it was windy and raining/sleeting/snowing! UGH!

Maryah is going tonight to the school dance. She is excited to go even despite my attempts to keep her at home resting up for D.C. next week!

She leaves Tuesday for her big adventure and thankfully the moms and dads that are going with have assured me they will be watching over her while she is away. This makes me feel better.

Thanks for your prayers for the Stolp family and for the Moreno family. I appreciate it and I know they do to!

Hope everyone is staying dry and warm in this weather...bring on SPRING!!!

Love and Blessings,
Rachel/Mama
_______________________________________

Hey!!

Maryah here!! Just one last update before i take of for the big D.C! I am super excited! I will be sure to take lots of pictures!

Like my mom said thank you so much for keeping our friends in your prayers! It means a lot!!

Well i am getting chemo now and the nurse has to take my temperature and all that jazz so i gotta go but i will update as soon as i get back from D.C and let you all know how it went!! All my love and God Bless!

~Maryah/The Champ

Wednesday, April 9, 2008 10:44 PM CDT

Good Evening!

Today we have had Tyler Stolp on our hearts. For good reason...he passed this afternoon just before 2pm.

Tyler is who Maryah ran into a few weeks back at the soup shop. She wrote a journal entry (March 27th) about him saying he is on the top of her hero's list and to pray for him. Please continue to pray for Tyler and his mom Dawn and sister. The loss they must feel is tragic (I can't begin to imagine). My heart is broken for this family as it is for each family we have met that has lost their beautiful child. I wish that we could find a way to take this away from the children. It is hard enough when adults suffer cancer but these children are so innocent and sweet and they don't deserve the suffering.

Obviously this brings a great deal of emotion. It also makes me just that much more grateful for the gift of time. I am grateful for all of my blessings this moment and I am grateful for all of our experiences. I wouldn't be who I am and I wouldn't know such great HOPE without all Maryah has been through.

Pray also for our friend Aleena and her Mom and Dad (Shelley and Leo) as well as all of her siblings. They have made some decisions and are taking care of Aleena at home with no further treatments. The heartbreak they must experience daily also makes me hurt for them.

Lord, watch over these families. Please wrap your arms around them and let them feel your loving grace as they go through each day that they might know your presence and feel some peace.
Thank you for the gift of life you have given Tyler and Aleena and may you watch over them always. In Jesus name I pray. Amen.

Good Night and God Bless,
Rachel/Mama

Tuesday, April 8, 2008 11:59 AM CDT

Good Afternoon!

Wow it is already afternoon. This day is flying by! That is good I guess since I'd really rather not be working today! I should be thankful for the blessing of a job however! :)

Maryah had her MRI yesterday afternoon. It is sort of frustrating to stop and think just how much time we have spent in waiting rooms over the past four years and how much time we have spent in an office waiting for a doctor to see us or someone to come back with something they said they'd be back with 1/2 hour ago...I have to say that I think it would all add up to days. Days of our lives we have spent waiting on others. I know sometimes there are good reasons for this and for those I can be patient and other times it is just out of sheer ego that we wait for others! I know I am ranting but we spent an unneccesarily long time waiting for the MRI last evening only getting out for Morgan to be able to attend a little under half of her dance class which she loves so much! I get irritated by these things now-a-days! UGH! Okay I am done ranting now!

Maryah's MRI results came just a little bit ago over the phone from Dr. Messinger. He is such a wonderful, patient and thorough Doctor and I so appreciate his style. He told us that there is nothing concerning in the MRI. We may be dealing with an infection and we are treating her already for that. She also may have some Lymphodema from the radiation which is easy to treat over time and we will talk about that AFTER D.C. She is fine and she is on for her trip with no worries! Praise GOD!

Well, with that said I have to get back to work. I wanted to get the update out. We will be spending this week preparing for the big trip next Tuesday! I'm sure we will have new pictures to post and lots of stories from Miss M!

Have a great week!

Love and Blessings,
Rachel/Mama

Friday, April 4, 2008 7:14 PM CDT

Hello! Sorry it has taken me so long to get back here and update. It's been a busy week for all of us.

Maryah went into clinic for chemo today. She is finishing up week one. She made the trip to clinic because she has been having some signifcant pain in her arm and today when she woke up it was swollen and red and she was in a lot of pain.

The docs have looked at it, done an ultrasound (for blood clot) and taken an x-ray to look for tumor. She is not showing anything on x-ray and the ultrasound does not show a clot so they have given her an antibiotic to take this weekend to attempt to clear up an infection if there might be one. On Monday she will go in for an MRI to determin what it is they think they might be dealing with.

Anytime something happens that throws things up in the air we have fear. I especially get nervous because Ry and Mo are with Dad this week so I haven't seen them since Monday! It sure does stink and I feel so helpless. Of course, I know Zachary is taking the best care of all of this and helping Maryah, keeping an eye out for anything strange but I always feel so distant when she is away like I cannot do anything to help (even more so than normal).

I will update again as soon as we have an idea of what we are dealing with. Please keep prayers coming so Maryah can be healed of whatever is ailing her. She is really looking forward to her trip to D.C. in two weeks.

Thanks for continuing to visit and support us. It means a lot to Maryah and to all of us!!!

Love and Blessings,
Rachel/Mama

Thursday, March 27, 2008 2:27 PM CDT

Hey!

Maryah here! Today I am spending the day with Megan at her work! We are having so much fun together! I love spending time with aunty Megs!!
Today for lunch we went to Edingtons for lunch and ran into a friend of a friend...His name is Tyler, he is nine years old and has stage 4 neuroblastoma and is putting up one good fight however he needs our prayers so if you wouldn't mind adding one more person to your list of prayers it would mean a lot to me! He is one tough little boy and is one of my heroes...he is definitely at the top of my "Hero's" list!!!!
I was very excited when we got the GOOD news! It makes me feel so much better to know that the spots are getting smaller and that the chemo is working!
Well I just wanted to write and say hi...I am not sure once I get back to school on Monday how much time I am going to have to do updates but if I don’t write again before I go to DC then I will write as soon as I get back and let you know how much fun I had! All my love and God Bless!

~Maryah/The Champ!

PS. If you would like to read more on Tyler you can stop by his page at
www.caringbridge.org/visit/tylerstolp
Thanks!

Monday, March 24, 2008 12:15 AM CDT

Hey everybody!!

Happy Easter!! I am a day late but i hope you all had a wonderful fun filled Easter!! This morning I woke up at 6:00am to get down to the hospital by 7:15 for my bone scan! I am really tired!! Hahaha

Right now i am at work with my mom...The receptionist is gone for the day (sick) so I am here answering the phone's!! I better get back but I wish you all a wonderful day! All my love and God Bless!!

~Maryah/The Champ!!
_______________________________________

The scans brought good news. The chemo is working and the "spots" are smaller and some are gone.
We are so pleased! Thank you for the prayers! They have done the work to take care of our girl once again! She is happy and so are we!
Maryah made a wonderful Receptionist at work for me today. I was very proud of her and what a responsible young lady she has become!

SO GLAD FOR GOOD SCANS!!!!

Another round of chemo and then off to Washington D.C. for Maryah!

Thank you again for your prayers and your support!

Love and Blessings,

Rachel/Mama

Tuesday, March 18, 2008 11:09 AM CDT

Good Morning!

How about the snow cover we got this morning? As pretty as it was in this "winter wonderland" I was a little sad that we are getting closer to spring yet! I am very ready for the warm weather and sunshine...especially for the kids sake. They are all so darn sick of being cooped up!

Miss M will be finishing this round of chemo on Friday and will be having a bone scan on Monday morning. We should have some results shortly after that. We are looking to see if the chemo we are using is shrinking the bone lesions we have seen on previous scans. I am praying very hard that we are making progress.

Maryah is ready for her trip to D.C. in just a couple of weeks. They are geared up for Easter and spring break is just around the corner.

Lots to do and lots going on! We are all happy and although struggling with colds we are all doing quite well. Thank God for small miracles (or maybe really big ones)!!!

Happy Easter to everyone!

Love and Blessings,
Rachel/Mama

Monday, March 17, 2008 2:27 PM CDT

On this day, let us remember the suffering that inspired the one whom we call St. Patrick. Around the age that Maryah is now, St. Patrick was kidnapped and taken as a slave to Ireland...and it was through those hard, lonely, and trying times that he developed his deep love for God.

Suffering is an opportunity for us to be/become closer to God. If you believe this then you know Maryah and God are mates. I think part of the reason Maryah inspires so many of us is she shows us how to LIVE our faith. This faith is within each and everyone of us...sometimes we have to look for it, sometimes it comes to us, but we must always hold on to it.

So continue to "pray hard, walk tall, and do right".
Happy St. Patrick's Day,

Dad/Ringman/Zach

Tuesday, March 11, 2008 11:33 AM CDT

There is a new song by Alicia Keys called "Superwoman"...so besides "Champ" this is another nickname for Maryah.

"Even when she's a mess,
she still puts on her vest,
with an 'S' on her chest,
oh yes...
...she is Superwoman".

She is on her 44th total round of chemo and still goes to school. She has her head held high yet she is humble. She walks with the confidence that "BOLD IS BEAUTIFUL". She has a wonderfully easy laugh yet is not doing it to hide the pain. She dances in a ring of fire yet throws off the challenge with a shrug (Jim Morrison). She is a big sister to many and teaches the children "to get up after the night of grief and despair, weary and bruised to the bone" (Oriah Mountain Dreamer) and to fight the good fight. She teaches us there is strength in weakness. She has endured 81 sessions of radiation and despite alllll of the challenges and struggles she radiates love, grace, comfort, and sincere joy. She is Maryah. She is indeed a Super Woman.

Dad/Ringman

Thursday, March 6, 2008 11:54 AM CST

Good Afternoon!

I haven't been here to update in a VERY long time! I'm so sorry. I know when I come to people's sites and don't see an update for a long time I either worry or I think "oh that's fabulous, they must be doing so well that they aren't thinking about this site!".

Well we have been just fabulous and not thinking about this site. Not that we don't think about our friends and our support here but busy day-to-day activities keep us away sometimes and that is really just fine. It helps remind us that outside of cancer we all have a beautiful life to live and take advantage of.

Maryah is on round three of chemo right now and will be getting more scans after round 4. She has been having some minor aches and pains in areas of her body so we've had some things checked on and as of right now they are okay.

Maryah signed up for classes at Cretin-Derham Hall this week and is geared up and ready for HIGH SCHOOL! I can't hardly believe it. When we started this guest book and this journey Maryah was only nine going on ten! Now she is going into HIGH SCHOOL...oh wait did I shout that already? I guess it is a sudden shot of reality that I am getting older and my daughter is about to attend her parent's alma matter. Wow! Big stuff.

Maryah is also getting geared up for the eighth grade trip to Washington D.C. leaving on April 15th. She made the docs at Children's order that her Dad and I DO NOT COME WITH! I guess we can't go! She will have a great experience and I can't wait to hear all about it.

Maryah was great in the fashion show and looked stunning as she did her little twist and turn out on the "cat walk". It was very fun!

Angie from the GAP in Woodbury Lakes was gracious enough to give her the outfit she was modeling on behalf of the staff at GAP. As I have said before for those of you Minnesotans who visit here SHOP AT WOODBURY LAKES GAP!!! They are the most devoted and kind group! I love them and will promote their business any day!

Thanks for putting the new pics up Megs! Love them and hope everyone enjoys them!

Well...back to living life! Hope everyone is well and living their beautiful lives too! Enjoy the warm up we are supposed to get! Keeping crossed fingers for that one!

Love and Blessings,
Rachel/Mama
_____________________________________

Nice jounal mama!! I love you!!

Hey Everyone!
I am sorry that I have not updated it a while!! Between school, Chemo, and friends I have been SUPER busy!! I am in the middle of doing homework right now so i cant make this to long but i just wanted to let you all know that i do read all of your guestbook entrys and i thank you all sooooooo much for taking the time to write to me!! They make me smile everyday so thank you!! All my love! God Bless!

~Maryah

Monday, February 25, 2008 10:24 AM CST

Good Morning,

Thought I would change the journal entry because the last one wasn't much fun!

Maryah is going to participate in the Woodbury Women's Guild silent auction tonight. The fashion show raises money for Children's Hospitals of MN. For those of you who remember she participated last year and was given the opportunity to model for the GAP. She will be doing that again this year thanks to Angie Beech at the Woodbury Lakes GAP store!

Maryah is very excited as are the rest of us excited for her!

We are half way through this round of chemo (round #3). We will do one more round after this and scan her again. Hopefully (praying) we will see more improvement. I know she is fighting this with all her might! The rest of us are praying with all our might!

It has been Maryah's dream to perform toe ballet since she was a little girl. Well, some of her classmates at DDs are starting to practice some toe ballet. Dianne has graciously offered to bring Maryah to be fitted for her own pair of toe ballet shoes so she may attempt to participate in all things where her leg is kept straight. She is really looking forward to this as am I.

It was hard to watch her watching them practice with such longing in her eyes so it will bring us much pleasure to see her actually get to do this! You go Ry!!!!

Well, that is all for today! Hope you all have a fabulous week!

Love and Blessings,
Rachel/Mama
___________________________________

THE FASHION SHOW WAS WAY FUN LAST NIGHT!! :):)

-MARYAH,KATHLEEN AND ARI, MY AWESOME FRIENDS!! :):)

Tuesday, February 19, 2008 12:10 AM CST

Good Morning,

Just a quick update as I promised. We did hear yesterday from one doc at Hem/Onc. She said that the lesions on Maryah's skull, sternum and Left Hip are still there. She was unsure as of yesterday if they were smaller than they were at onset. I am still waiting to hear from Dr. Slomiany however so I will have more info then.
I am still very hopeful that the chemo is working on these spots and that we can keep going and get rid of all of them.
Once I have more news I will update again. I know that some were waiting anxiously for results so I wanted to get out what we know.
Maryah is bummed that these are still hanging around but we will kick them out!

Thanks for checking in!

Love and Blessings,
Rachel/Mama

Thursday, February 14, 2008 11:11 AM CST

Good Morning!!!!

It is with a happy and GRATEFUL heart that I update today!
I am coming with news from Dr. Slomiany that the PET scan showed that most all of the bone lesions are "resolved" or not showing up any longer.

They could not see the spot on the sternum or skull because of all the hypermetabolic activity in the heart and brain.

The bone scan we are doing tomorrow will show how those spots are coming along.

So, it looks like the chemo and radiation are doing their thing. It is all good news thus far.

I have prayed and prayed for a miracle for so long and right now this is the miracle I was looking for. I will update you more when I get the results from Friday's tests.
Please keep praying, it is working!

Now onto a great weekend! YAY for the CHAMP!!!! She does manage to beat the odds!

Love and Blessings,
Rachel/Mama

Monday, February 11, 2008 9:56 AM CST

Yesterday Maryah, Morgan and I went to mass at the Cathedral. During the time where we're called to genuflect Morgan was a bit antsy and stood on the kneeler so I quietly had her assume proper position for prayer. I did not require the same of Maryah because she wasn't feeling the best and because her right leg does not bend. As prayer went on I discretely opened one eye to check on Morgan and saw her AND Maryah kneeling in quiet prayer with eyes closed. I've seen Maryah do this before - kneeling in pain - at the statue of St. Therese (which is behind the alter at the Cathedral). I joined them in prayer and couldn't help but tear up when seeing this image and witnessing, yet again, the love and grace of God.

Stay prayed up!
Zach/Maryah's Ring Man

______________________________________
Prayer of St. Therese
May today there be peace within. May you trust God 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 confident knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.

Wednesday, February 6, 2008 10:33 AM CST

Good Morning!

Ash Wednesday already! Can't believe lent is right upon us. Seems that this year is already flying right by!

This has been a harder week for Maryah with quite a bit of nausea which the docs are blaming on radiation being so close to her stomach. She is getting some IV assistance for that today though and hopefully that will help her to feel better.

Tomorrow will be the last session of radiation. She will finish round two of chemo on Friday and then next week during her "off" week she will have scans to determine if the "spots" are changing, going away, getting bigger or if there are more.

Of course we are praying that the chemo and radiation are getting rid of the "spots" and praying that there are NO more than there were originally and that we are winning the battle. Pray with us please! If you need specifics for your prayers...she will have a bone scan, PET/CT scan, EKG and ECHO. We are doing the scans on Friday and will have NO results before the next week on Tuesday. I will of course post an update just as soon as I know what the details are. I am praying that my baby is kicking cancer's butt and that we can keep this beast at bay! Of course I also pray that if it is in God's will that she be cured completely.

I plan to post pictures this week or early next. We have gotten lots taken but none posted and I am slacking on my job! I will work on it...I promise!

Also, please offer a little prayer for my dear friend/sister Natalie and Joe for the birth of their new baby boy Carter Eugene born on Monday, February 4th at 5:57 p.m. at 7lbs. 11 oz. and 20". He is healthy and beautiful. We are all happy and excited he is finally here!
Also, for our dear friend Alesha and her husband Ron who welcomed Deacon James on Friday, February 1st at 5:30 p.m. at 7lbs. 10oz. and 20 3/4". Can't wait to see him and welcome him! Eventually he and Nicholas will be dancing together at DDs!!!

Have a great rest of your week and weekend!

Love and Blessings,
Rachel/Maryah

Friday, February 1, 2008 3:48 PM CST

Hey Everyone!!

Maryah here!! I am super glad that its Friday!! That means i get a whole two days off of school, Chemo, and radiation!! I just got back from chemo and I am not feeling that well but I just wanted to say hi to everybody and I hope you all have a great weekend!! All my love and God Bless!!

~Maryah/THE CHAMP!!

PS. Thank you so much for writing to me!! I love to read all of the guestbook entrys!!!!!!!!!!!!!:):):)

Monday, January 28, 2008 10:50 AM CST

Maryah had a good weekend. We spent most of our time "chillaxin'", as she says. This word is a combination of two words:

1. "chill" - as in "to chill", a street word, meaning to unwind, loosen up, calm/settle down, and
2. "relaxing".

Maryah was in the hospital most of last week. That stunk because it was her off week of chemo. She receives two chemo drugs for her first week, one chemo drug the second week, then the third week is her off week. But she took it in stride...even though while she was in the hospital she got the stomach yuck.

We had plans to go to Grandmere's home (Maryah's great-grandmother) but took a rain check due to her need to recuperate and "chillax". Maryah and Morgan did manage to go to the Xcel Center to watch the men's figure skating competition yesterday afternoon thanks to a generous person who volunteered his tickets.

Though her blood counts may be down a little today she still went to school. This girl just keeps getting up! That is a Champ!

Peace be unto all of you,
Zach/Dad/Ringman

Friday, January 25, 2008 3:42 AM CST

Good Morning and an early one at that! For any of you who have followed this site from the beginning you know that when I am at the hotel with Maryah I just don't sleep that well and therefore find myself on my laptop type, type, typing away.

So...I got a good jump start on my work day tomorrow answering e-mails and tying up some loose ends before I walk in the door to a huge mess. Now I am here to update and will eventually be playing a mindless game of solitare!

Here's the good news. Maryah will be coming home this afternoon sometime. We have gotten most of the side affects under control or at least enough to come home. The stomach issues are under control and she is happy and laughing and apparently making Megan laugh at random moments as well (people look at you funny even if you aren't randomly laughing Megs...lol j/k).

More good news yet....I am feeling better, Mo is healthy, Tori is better, Dan, Libby, Zach and Elaine have not been attacked (keep praying) by this bug and I had enough energy after sleeping until noon to disinfect my ENTIRE house and every piece of clothing and bedding in it. I even boiled toothbrushes! YAY!
Thank God for small miracles.

So tonight Maryah is resting peacefully while I have been tossing and turning (big surprise). Thankfully for me Nicholas has prepared me for sleepless nights and it's not such a shock to the system.
Later this morning Nuna will be back to help Maryah get out of the hotel and home again.

I am praying for an uneventful, peaceful and HEALTHY weekend. Please pray that for our families also. I think that is what the doctor truly ordered!

Hope the flu bug hasn't gotten you! Take care and enjoy our weekend warm up. Monday brings round two of chemo. We're on!

Love and Blessings,
Rachel/Mama

Thursday, January 24, 2008 7:00 AM CST

Good Morning,

It is early but I am up after I've been fighting the stomach flu for just over 24 hours. Those who said this is a 24 hour bug LIED TERRIBLY! Unfortunately this has been a two week bug putting kids and I down for more than just a day.

Tori and I ended up home yesterday lying in our beds. I'm not sure we saw eachother at all other than to get something to drink and passing eachother on trips to the bathrooms. Neither of us had any energy to move. I still am out of commission today!

The most unfortunate news is that poor Maryah came down with it yesterday afternoon too. Why should she miss out on the fun huh? UGH! As if she doesn't have enough to deal with...damn it!

We need healing and germ ridding prayers. I honestly feel that our house is one big petri dish at the moment. Doesn't seem to matter how much I clean, sanitize, wash clothing, bleach spray, clorox wipe...it just keeps coming back and claiming a new victim in our house! Nasty bug. They are saying that this particular bug is taking down school attendance by up to 50% in Dakota, Ramsey, Hennepin, Anoka and Washington counties amongst others they listed. Unbelievable! One would think with our sub-zero temps that all the bugs would die off!

Well, enough about the nasty stomach flu. Maryah is still at the hotel and that is probably fortunate since they can medicate her for her stomach issues. Hopefully she feels better when she wakes today.

We anticipate her being able to go home tomorrow and that is good news for all.

Dad (Zach) is pulling all the wieght while everyone falls ill around him and he's doing a stellar job of planning, calling, updating me and staying on top of all that's going on! Thanks Zach!

Nuna is stationed at post right by Miss M's side at the hotel while Dad works and I lay immobile in my bed. Thank God for good family and strong support.

Thanks for keeping up with us, for good wishes and prayers. We NEED them! Keep Zach and Nuna in your prayers too (I'm sure they could use a few).

Love and Blessings,
Rachel/Mama

Tuesday, January 22, 2008 8:03 PM CST

Good Evening,

Just a quick update to let you know Maryah is staying at the "Hotel 4200" tonight in order to get some meds to help with some "yucky" side effects from chemo and radiation.

She will be there tonight and possibly tomorrow but we are unsure until the docs do rounds and we see what she needs tomorrow.

I will keep you updated. We will begin a new round of chemo next Monday. After this round we will do more scans to see where things are at with the tumors.

We are on the upward mend (God willing) of all the illness in our home. Mo and Nick have both had the stomach flu that circulated to Angie's house and family and most of the other day care families so we are just trying to get everyone healthy again.

Hope everyone is staying warm and looking forward to a warmer weekend.

Love and Blessings,
Rachel/Mama

Wednesday, January 16, 2008 2:20 PM CST

Good Afternoon,

Many thanks to Zach for the beautiful entry on Friday. The one nice thing is that where one of us leaves off the other picks up. Great way for us to co-parent the girls and it is nice to know that when one can't pick up and deal the best the other can. Thanks Zach!

There is a "beautiful confusion" that comes with all of these challenges, the struggles, the happy moments the laughter and joy. There are questions and mystery yet the truest sense of belonging whatever situation we are in. I cannot say that this is anything less than the greatest gift and blessing we have.

For instance, poor Miss Morgan was terribly sick with the stomach flu starting on Monday and although she was having a rough go of it at that moment through frustration and exhaustion it just made me smile that after she finished puking in the parking lot at McDonald's Dan was right inside to come get Nicholas and take on the rest of the girls at dance while I was able to get Mo home, clean up and take care of her. Zach was one call away to help the planning for the next morning so Mo could stay home and rest with me and on, and on...this is the smooth chaos that comes in our everyday lives. It is a blessing and sometimes we just need to be reminded that in all of this there is beautful confusion. I like that.

After our news on Friday and everyone dealing with it in their own ways we came to a plan this week. Maryah will continue on the protocol for chemo we had already put in place. She begins radiation today for the spots on her skull and sternum. There are two more spots we will not radiate now but watch for growth or improvement after round two of chemo.

Maryah went to school yesterday and today and she is doing quite well despite the nausea and overall emotions of the news she has been hit with this past month. As always I am so very proud to be her Mama.

We are still laughing, hanging in each day by our fingernails and finding God in all we see and do. I am grateful for my faith and can't imagine where I would be without it.

Thank you to each of you who are "lurking" and leaving messages. I appreciate your caring and support. Thank you to all my dear friends who accepted my request to "leave me be" on Friday and even to my entitled sister who called like a psychopath until I answered just to make sure I was okay...guess what? I'm okay! We are all okay!

Love and Blessings,
Rachel/Mama

Friday, January 11, 2008 12:40 AM CST

Today we received the results back from the scans Maryah had yesterday. They said there is "activity" showing in the chest area, top of the head, and possibly two places in the left leg.

After making a B-Line to Maryah, holding her, sharing with her what is going on, and of course some tears...Maryah cracked a smile and some jokes. They were not I'm-ignoring-my-pain jokes. They were I'm-comfortable-in-my-skin-and-God-has-me-so-it's-alright-to-laugh-and-cry jokes.

I heard there is a concept in Italian that translates into "a beautiful confusion". This idea reminds us that through all of the struggles, radiation, chemo, doctors, pain, nausea, medications, worry, stress, thoughts, and all of the other combinations of experiences and emotions that we don't have words to describe...there is still beauty.

This beauty welcomes the confusion and somehow, someway helps us to make sense of this crazy thing we call life. Maryah's grandmother "Nuna" wrote to Maryah years ago..."always be watchful of the little things around you"..."for in doing so you will see the face of God".

We'll keep you updated.

Keep strong and prayed-up,
Maryah's proud father/Ringman

Wednesday, January 9, 2008 3:42 PM CST

Good Afternoon!

The final biopsy results are in and the word is "all clear" the Ewing's is not in her marrow! Thank GOD!!!!
Maryah has been adapting to the chemo rather well. She is a bit nauseated but seems to be handling it.
She has had a pain in her chest (bone) and so we had an x-ray and will do a bone scan to look at it and find out why.
Not sure what's going on there but praying it is just a fluke.
Hoping everyone is having a great week! Thanks for all of the prayers and support. We appreciate it so much.

Love and Blessings,
Rachel/Mama

Monday, January 7, 2008 8:31 PM CST

Good Evening,

It has gotten a bit late but I have just gotten the opportunity to sit down and write for a moment. Sorry for the suspense. Really, I don't know the final results of the biopsy today but the preliminary results are clear. Dr. Slomiany's words on my voice mail were "it doesn't look like the bone marrow has been invaded by the Ewing's". That is good news for today and in my book today is as far as I can see.
Maryah started her day early down in short stay and although she was tired being sedated was not her idea of a good nap! She was a bit scared and there were tears shed in the few moments before she dozed off with the magic of the medicine. Before she did however she yelled for me to keep singing in her ear...so I did. Apparently while she was under she reached out to hold the Anestheiologists hand and that must have been comforting because she seemed restful after that from what they said.
It was a bit harder to get into the right hip they figure because of the work she's had done on her right leg and her past surgery last January to remove the tumor.
After the biopsy and a few complaints and tears over pain she was up and dressed and off to the clinic to start chemo. She happily chowed a piece of pizza and watched some of her favorite "chic flicks" while we waited for everything to get situated and the medicine to flow.
After the clinic it was in the car and across the street to radiation to lay on a hard table while her back was hurting her so...she managed her way through and still ended up at dance class playing with her sisters, her brother and chasing Azaria around the studio.
She is feeling pretty good tonight with the exception of a sore lower back and a yucky stomach. Hopefully the nausea will pass as her body adapts to these new drugs. We always have meds to combat the nausea too!
Keeping our fingers crossed that the other side effects won't show their ugly faces.
We will be wrapping up radiation next Tuesday and during that time she will receive her chemo in the clinic. After that we will begin to do it at home or at Nuna's house with the home care nurses in place to help. That will be a little easier.
Maryah was very pleased to learn that she would not have to have a "back pack" with saline fluids running at all times while she is having her chemo.

Once I have recieved the final results from the biopsy I will return with an update. In the mean time things are going along and Maryah is handling things well.

Thank you for visiting, signing the guest book and just being here for support in general. We appreciate it deeply.

Love and Blessings,
Rachel/Mama

Wednesday, January 2, 2008 4:55 PM CST

Hey everyone!

I am at Angie's house right now and am playing with the kids so I am not going to stay and write a ton but i thought i would wish everyone a happy new year! I hope that everyone has a great 2008!! Thank you all for the prayers...they are working!! We will let you know how the first day of chemo goes on Monday. All my love and God Bless.

~THE CHAMP :):)
________________________________________

Quick recap and update:
-Wednesday - we met with Dr. "Slow-pants" and decided to give a new chemo concoction a try. M will have 12 more rounds - in addition to the nearly 40 rounds she's had already. This will run concurrently with radiation...though she only has a few weeks left of radiation.
-Saturday is the 4th anniversary of the original diagnoses. She has battled since the age of 9!
-Monday morning the Champ will have a bone marrow aspiration, followed by her first new round of chemo, then she will receive radiation.

This girl really is The Champ!
Dad/Ringman

Friday, December 21, 2007 10:43 AM CST

Good Morning and Happy Friday! It's good to be at the end of this week and rounding the corner to Christmas. It's such a blessed time of year and I always find peace as I remember the season and what we are celebrating. The Christmas lights, the little kids that are coming in and out of the Nursing Home where I work singing Christmas carols. They are so filled with joy and anticipation.
Dan and I have been enjoying watching the kids get ready for Christmas and admiring their giving spirit as each one of them searches frantically for one of their prized possesions to give to one of their sisters. They are all teaching Nick about what he is seeing around him and antogonizing each other about who know what gifts are under the tree.
Somehow they know that there is so much more than the gifts and I feel so blessed that each one of them has this extraordinary ability to give of themselves before they consider what each one wants. None of them seemed bothered when we told them that Christmas would be slim and that was a wonderful gift in and of itself. We've taught them for many years that Christmas is not about gifts anyway. I guess maybe they do hear us!
This is a season for miracles and I am a FIRM believer in miracles. Thank you to each one of you out there praying for Maryah and for our family. The strength that prayer brings is priceless and it is the one thing that we can all do that costs us so very little. I have been to my knees in prayer daily and once again I have been blessed with a peace I cannot explain.
My time with our children and all those we love is the best gift this Christmas brings. I wish for each of you that you are blessed with that gift as well.
On a medical note...Maryah went through scans and simulation for radiation yesterday. They marked each of the four spots and unfortunately marked an area where we fear there may be two more spots to deal with. I don't have confirmation on those spots as of right now but when I hear back from Dr. Farniak I will let you know.
Dr. Slomiany and I are still researching our options for treatment in combination with radiation. Zach and I will be working with he and Maryah to make some decisions about treatment.
With all that said I am signing off for the weekend and wishing you all a Merry Christmas and Happy New Year!

Love and Blessings,
Rachel/Mama

Tuesday, December 18, 2007 10:26 AM CST

Good Morning,

Well it is with heavy heart that I post today's journal entry.

Unfortunately I do not get to post again that we have clear scans since the results that we received yesterday show that Maryah has four lesions showing on her PET scan. There are two in her right arm in the proximal and distal humerous, there is one in the left proximal humorous and one in the left sacrum/illiac.

Dr. Slomiany gave us the results and is now trying to contact the U of M to discuss radiation possibilities and he and I will be doing research today to determine our best medication options.

Maryah is quiet,and sad as are we all. This is not the news we wanted but it is the news we have. Just as we have always done we will stand up and fight and do all that we can to beat this horrible disease. We have been strong and fought hard in the past and will do the same now.

Maryah has had such a great year and has had the opportunity to do so many fun things. Those opportunities will continue into this next year as she approaches her eighth grade graduation and prepares for high school. We have so many things to do including a school trip to Washington D.C. in April. Better yet, Christmas is right around the corner and that means lots of fun time with family and there is nothing that makes us happier.

So with a sad but grateful heart I thank you for all of your continued support and I thank the Lord that I have all my beautiful children to hug and hold this Christmas.

Wishing you and your family a wonderful Christmas filled with love and joy.

Love and Blessings,
Rachel/Mama
_______________________________________

Hey Everyone!!

It's Maryah! Yesterday was a pretty crapy day (pardon my language). haha. We got some news that we wern't expecting but I am feeling better today. I went to school just like a normal day. It was really nice getting all the support from my friends. Well I am not going to stay to long but I just thought that I would add a little something to my mama's. I hope you all have a great rest of the week and I will write again soon. All my love and God Bless.

~Maryah

PS. Just to let everyone know, give you all a heads up I am going to beat cancers A$$!! (AGAIN)!!!! haha.Pardon my language! Agian.

Saturday, December 15, 2007 2:57 PM CST

Hello everyone!!

This is Maryah!! Once again I am sorry for not being able to write but I am always super busy with school and a lot of homework and when I am not doing all that then I am spending time with my friends and family. Like my mom wrote in her last journal we set a date for my surgery which will take place on January 10th, 2008! I am a little bit nervous but I know that it will all be ok and I will be able to hopefully bend my knee at least a little bit which I have wanted to do for so long.
School is going sooo well! We just finished our first trimester and I am still doing well in math which has always been a struggle for me so I am very excited and proud to say that I am getting an A-!
I just had my scans done Yesterday so on Monday or Tuesday when we get the results my mom or i will for sure let you all know what the results are. I hope everybody has an awesome weekend! All my love and God Bless.

~Maryah

PS. There is a new picture!! We will post more soon!

Monday, December 10, 2007 3:56 PM CST

Hello and Happy Holidays!

It is time for another update. It has honestly been nice to not have much to report although I do apologize for not being better about updating this journal. Baby Nicholas has kept me very busy and when he and our other four kids aren't keeping me busy I am busy with working full-time and the holidays that seem to be approaching far too fast once again.

Maryah visited with Dr. Clohisy at the U of M on Friday to discuss an upcoming surgery to give her a new prosthesis that will replace the steel rod she was given a year ago November with antibiotic spacers.
The surgery has been scheduled for January 10th and at that time we will be doing a total knee replacement. Before that we will be determining what will be the best femeral replacement for her. Our goal is to get her leg length equal to her left leg and give her something that will be sturdy for a good length of time.
Dr. Clohisy gave Maryah the option to do a bone fusion and give her a permanently straight leg with no knee joint. She didn't favor that idea and although it would give her a permanent fix with no further surgery it would also require two years at minimum for total healing and recovery with no wieght baring for up to six months. That doesn't seem like the best option for an active 13 year old girl.

We hope that whatever we decide to use will be pain free and helpful in her physical abilities.
It will be another hospital stay and another period of recovery but in the long run it will be better for her.

Maryah is fairly nervous about all of this but she is handling it with her normal grace and style.

To ease her nerves a bit Dan took she and Tori to see Taylor Swift on Saturday at the Mall Of America and they had a blast. That on top of our 16 girl sleepover on Friday night to celebrate Tori's birthday!!! Intersting! Thank goodness 10:00 a.m. came quickly.

We also put the Christmas tree up last night and that is one of Maryah's favorite things to do. So all-in-all it was a nice family and fun filled weekend with lots to distract her from her worries.

Please pray for the surgeons to find the best options for her and for a quick and pain free recovery.

Thanks for continuing to check in. We wish you and your families a very Merry Christmas and Happy New Year! We will keep you upddated.

Love and Blessings,
Rachel/Mama

P.S. I forgot to mention that Maryah will be having her PET/CT scan on Friday 12/14 (stay prayed up). I'll let you know when we get results on Monday how things are lookin'! Of course they will be just fine!

PPS.There is one new pic of me and Nick!! we will post more soon!!
~maryah

Wednesday, November 28, 2007 9:56 AM CST

Maryah's middle name is Therese and so quite naturally we've prayed to St. Therese many times. At the Cathedral in St. Paul, behind the alter, are statues of Saints. Going from left to right we find St. Anthony, St. John the Baptist, St. Patrick, St. Boniface, Sts. Cyril and Methodius, and last but not least St. Therese ("The Little Flower and Patroness of Missioners). Whenever we go to the Cathedral - whether after church or during the week - we make the walk behind the alter to stop and say quiet prayers with St. Therese. Maryah shares many qualities of her namesake. On one visit after leg surgery Maryah was in a lot of pain but still knelt down on one knee to pray and give thanks for the small things. Below is a prayer by St. Therese that we've also prayed many times...and it was sent to me by a good friend - a brother - Adam Delisi (Uncle Adam) who's wonderful grandmother just passed away yesterday morning. This is to be shared with all of you.

"May today there be peace within. May you trust God 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 confident knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

Know this, feel this, live this!
Peace be unto you,
Zach/Dad/Ringman

Wednesday, November 21, 2007 11:23 AM CST

HAPPY THANKSGIVING!!!!

Thank you for continuing to come and check in on Maryah. We are thankful for all of the continued support and prayers!
There is really SO much to be grateful for this year.
Have a wonderful family and fun filled day tomorrow!

Love and Blessings,
Rachel/Mama
___________________________________

Hey Everyone!!

Maryah here. I just wanted to tell you all to have the best Thanksgiving ever!! I am thankful for all of you! All my love.

~Maryah

Friday, November 9, 2007 1:04 PM CST

ATTITUDE

There once was a woman who woke up one morning,
looked in the mirror,
and noticed she had only three hairs on her head.

Well," she said, "I think I'll braid my hair today?"
So she did and she had a wonderful day.

The next day she woke up,
looked in the mirror and saw that she had only two hairs on her head.

"H-M-M," she said,
"I think I'll part my hair down the middle today?"
So she did and she had a grand day.

The next day she woke up,
looked in the mirror and noticed that she had only one hair on her head.

"Well," she said,
"today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.

The next day she woke up,
looked in the mirror and noticed that there wasn't a single hair on her head.

"YEA!" she exclaimed,
"I don't have to fix my hair today!"

Attitude is everything.

Be kinder than necessary,
for everyone you meet is fighting some kind of battle.

Live simply,
Love generously,
Care deeply,
Speak kindly.......

Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain

I got this story in an e-mail and felt very humbled. I sometimes forget to choose my attitude or maybe just forget that it is a choice.
As I have watched Maryah enter the 8th grade, develop her friendships, regain her confidence both academically and socially I have been blessed.
Our mother/daughter relationship has bloomed and we are not having to struggle through the nurse/patient relationship at this moment. It is such a blessing to me to feel that bond re-created all over again and in such a different way.
Most complain about the teenage years and how God awful their teens can be, never fear I have some "teen issues" to deal with too...THANK GOD!!!

Enjoy the beautiful snowflakes and hug your family today!

Love and Blessings,
Rachel/Mama

Wednesday, October 31, 2007 8:14 AM CDT

Happy Halloween!!!!

Hoping everyone has a safe and spooky Halloween. Enjoy your day and keep warm this blustery and windy evening while you are out tricking and treating.

Maryah, Morgan, Tori and Libby will be making the rounds in Cottage Grove tonight and I am sure Nick will be hanging out with Mom in his bat costume handing out candy to all the neighbors.

Should be fun!
Be safe and enjoy!

Love and Blessings,
Rachel/Mama

Thursday, October 18, 2007 8:58 AM CDT

Good Morning!
It would only be better if there was sunshine in the forecast. The rain is wearing heavy on everyone and a little sunshine could do everyone a lot of good. I know the kids would all really enjoy getting outside a bit before the snow flies to ride bikes and go for long walks.
There isn't a lot of new news but a few things that I think are worth writing about today:

1. Miss Maryah began participating in a dance technique class on Monday evenings while Morgan is in her class and she is SO excited to be dancing again!

2. We are working with Dr. Clohisy to determine when/if we can can do surgery to give Maryah a new prosthesis.

3. Maryah finished her last Etoposide pill on Monday night and began her Celebrex routine last week.

4. Maryah informed me yesterday that she is getting an A- in her Math class!!! This is particularly exciting since Math has been a struggle since even before chemo took place. She is still working to get caught up in some other subjects but she is really determined and very dedicated this year to her studies and that makes me very proud! Of course Uncle Greg (my brother the Math teacher) will be just as proud!

As we approach the holidays once again this year there is SO much to be thankful for and I am ever so thankful for another year of happiness and even struggles. I heard a song played on the radio this morning and the lyrics are:

Que sera, sera, life goes on,
Whatever's meant to be will always be
And baby what don't kill you will make you strong
Just love the journey that you're on
In all you do, I'll pray for you.

I thought it was a sweet song of a mom's message to her daughter. It really applies to us all!

Love and Blessings,
Rachel/Mama

Tuesday, October 9, 2007 6:10 PM CDT

Hello!!!!

I just got back from the doctor. MY SCANS ARE ALL CLEAR!!!! YEAH!! I am so excited. I have been on chemo for nine months now and it just so happens that every nine months I have a recurrence and this is the first time that I have not had a recurrence. Dr.Slow said that I should be done with the chemo that I am currently taking now and go to a different medicine so I am moving from Etopiside to Celebrex. I am so excited and will write again soon but right now I am about to leave to go to dinner for some celebrating!!! I hope you all have a great rest of the week. All my love and God Bless.

Maryah

Tuesday, October 2, 2007 5:12 PM CDT

Hello everybody!!

How is everyone doing?? I am sorry I haven't updated in so long but like my mama wrote I have been very busy with school, homework and fiends and then a lot of other side stuff on top of that. I am loving school!! It has been a great start to the year so far. My grades a pretty good, I have a ton of awesome friends and I have my new little bro Nick who always puts a smile on my face (along with my other sissy's). It has also been really nice not having a ton of doctor's appointments to go to. There are occasionally one or two here and they’re just for blood draws but other then that not a whole lot. On Thursday I have scans, so I will have a PET and a CT. I am praying for good results but I have no doubt in God and I am sure he will be watching over me. Well, I will try and write again on either Thursday or Friday to let you all no how the scans went. I hope you all have a great rest of the week. All my love and God bless.

Maryah

PS. We will post new pics soon!!

Friday, September 14, 2007 5:50 PM CDT

Well it has been FAR TOO LONG!!!
I apologize for my lack of updates. I guess truthfully it is a good sign.
Maryah began the 8th grade at IHM-St.Luke's. She was so excited to begin and she is truly enjoying every moment (even homework if you can believe it).
It is by the grace of God that I have had the priveledge to witness my lovely girl spend her summer playfully, joyfully and with TONS of energy. I know that each time that I say "she is doing great" to someone asking I feel a slight hesitation, a cringe and an urge to quickly pray that my words don't bring back the pain and struggle we have faced.
It feels so good to watch her this way and to have so much fun. She is such a presence in my life and I can't explain the amount of peace I feel when she is feeling good.
The chemo is still in place and she is still taking her pills daily but she is tolerating them well. Her hair has come back in a beautiful, curly, light blonde and it makes her look so young and care free. She is golden, sun kissed from the summer sun and the many days she swam hard and fast in our pool.
I know through experience that we are yet so vulnerable and we face many uncertainties but we will be okay as we have managed to be okay for these past years.
I am excited to report all is well and I hope that everyone else is well and enjoying the new school year, the new crisp season.

Love and Blessings,
Rachel/Mama

Friday, August 24, 2007 4:08 PM CDT

Hello everybody!!

This week I have been at my cousin Kaitlyn and Arielle's house. I came up here this past sunday and have been here all week. Tomorrow is the Emerson family reunion up and Square lake and then afterwards I am going home. It has been so much fun. My cousin Kaitlyn and her friend Brandi and I just got done watching the movie Disturbia. It was sooooo scary. I am really looking forward to Square Lake tomorrow. Anyone and everyone that is an emerson will be there. Well, I am going to go and hang with Kaitlyn and Arielle. I hope you all have a great weekend. All my love and God Bless.

Maryah

Thursday, August 9, 2007 1:36 PM CDT

Good Afternoon!

I thought I would update the journal again since I am finally feeling a bit better and able to sit up at the computer with a moment of peace while Nicholas is taking his afternoon nap.
Maryah has been so busy it's been tough for her to update also. She will participate and walk the survivor lap at the South St. Paul Relay for Life on Friday/Saturday. It is being held at the Lincoln Elementary track if anyone is interested in venturing down that way.
I am still having a tough recovery and won't be able to make it out this year but Maryah will be there with bells on and she will be staying over night with Megan and Allie. She is very excited to be particpating again.

Soon Maryah will be going back to school to finish out her 8th Grade year at IHM-St.Luke's. She is excited to be getting back but not TOO excited! Typical school kid (boy isn't that great)!

Maryah has been a FABULOUS help to me over the past couple of weeks as have all the girls. They have been holding Nicholas and trying to work at calming him down when he is fussy. They are all enjoying new little brother. I am such a proud Mama.

Nicholas is the most handsome little man I've ever seen (next to his Daddy of course). I am enjoying being Mama to a newborn again and of course memories of sleepless nights and fussy babies come flooding back in a big hurry too.

Although sleep deprived and sore I couldn't be more proud of my family especially our little champ! She is proving to be a finer young lady than I could have ever hoped for (not that I didn't already know this :)
I am so proud of her accomplishments, generosity, happy and positive spirit and even through boughts of teenage snippy syndrome she is a fantastic gal!

Hope everyone is enjoying our summer as it is coming to an end much, much to quickly!

We will update more and I am sure you can count on our dear Megan to put up pictures from Relay once they are ready!

Love and Blessings,
Rachel/Mama
_________________________________

Hey Everyone!!

Maryah here. This is one of the very first days this summer that i do not have anything going on and can just stay home and relax so i thought while I have a second that I would do a quick journal. Nickolas is so cute its not even funny. Just in this past week when I was at my dads he has gotten so big. This weekend we are thinking about going school shoping. I can't believe that school starts up in just a couple of weeks. I am so excited to see all of my friends and meet all of the new teachers that are coming. It's going to be awesome. Well, I am going to go and hang with my new little bro. All my love.

Maryah

Thursday, July 26, 2007 5:39 PM CDT

Hello,
Auntie Jo here again. Just thought I should add a bit
on how the "Mama" is doing. She has had a hard week, with
a good amount of pain. She was very nervous for the procedure, and told me she would never again tell Miss Maryah to not worry before any surgery or procedure again!!
Dan (proud dad!) and all the girls are being very helpful. So, life in Rachel and Dan's household is hectic, but a beautiful sight. Maryah has been a tremendous helper to mom...thank you beautiful girl!!!

Rachel and Dan...congratulations on such a sweet bundle!!

Will add more pictures with Rachel and Maryah's picks, a.s.p.

Love and Blessings to all!!!
Joanne/Auntie Jo

Tuesday, July 17, 2007 3:25 PM CDT

Hello... Auntie Jo here!
Just uploaded a new picture of the newest member of the clan!! Go to photos for a picture of Nick!!
He is one handsome little guy,
and we have all fallen in love
with him!!
Congratulations Maryah on your
new little bro!!

Hello Everyone!!

I figured I’d better update and tell everyone the good news. As of today July 17, 2007, at 7:53 in the morning Nicholas Perez was born. He was weighed at 9lbs 1oz and I think about 20in. He is defiantly a big boy. I talked to my mom just a little bit ago and she is doing very well, she is still in a lot of pain from the porcedure but is toughin’ it out. She says he is very very cute and I don't doubt that he isn't. I can’t wait to see him!! Well, once I do see him I will update again and give you all of the details. All my love and God Bless.

Maryah

PS. When my mom gets home and we are all settled in we will post pic’s.

______________________________________
Wednesday, July 18,2007

Hello again!!

Yesterday shortly After I updated everybody on our newest addition I went down to the hospital to see my new little bro Nick. He is soooooooooo cute it’s not even funny. I saw him and automatically fell in love with him. As I said in yesterday’s journal he was weighed at 9lbs 1oz and 20in long so he is defiantly a big boy but that just makes him so much cuter. He has a ton of hair and the chubbiest little checks. It’s so cute. I hope you all are having a good week!! All my love.

Maryah

Friday, July 13, 2007 8:42 AM CDT

Good Morning!

I figured I better get one last journal entry in before I may not be able to update for a bit. I'll be handing that duty over to Zach and Ry for a while since Tuesday I am scheduled for a c-section. Apparently Mr. Nicholas has decided that he prefers to be head up and feet down and no matter what we have tried he just seems to not feel like budging! So therefore...we go in for the c-section.

The girls are so very excited and can barely stand the anticipation. I'm not far behind although with just slight hesitation for the surgery and recovery.

Anyway, enough about me. Miss Maryah has been having an excellent summer. It is nice not to have to write these journal entries for a bit without angst and fear hanging above our heads. I love that we can have an enjoyable summer. Maryah does too!

Tutoring has been very successful and in fact Maryah just told me on our drive home yesterday that she feels she has learned more in the last few weeks than she has in a long while. She feels she is finally really comprehending her subjects. I am so very proud of her for getting up at the crack of dawn every day and getting on that bus, going to school and working very hard to get caught up. Way to go Ry!

Each day I am thankful for the "normalcy" we are experiencing because I still follow so many CB sites where kids/our friends are doing miserably and they are in such turmoil. I cry for them, I pray for them and I feel for them each day. There is not one moment that goes by that I don't feel thankful for the time we've got.

Thank you for continuing to stop in, read and leave messages. Maryah loves getting them and still checks in to see who has been to visit all the time.

I will encourage her to update more so you can hear right from the source!

Enjoy your summer and this beautiful weather we are having.

Love and Blessings,
Rachel/Mama

Thursday, June 28, 2007 2:59 PM CDT

Good Afternoon!

What a wonderful day and night last night after the exhausting heat we've had. I have to say 8 1/2 months pregnant in this heat is NOT fun!

Well....here it is (drum roll please)...Maryah, Allie and Alli recieved a High Gold award for their dance in the Masquerade National Finals on Tuesday night.
Morgan danced Wednesday morning and received a Gold!!! All the girls from DDs did an AMAZING job at competition and it goes without saying I am very proud.

It has been a busy but fun week and now Maryah and Mo are finally settled back in St. Paul at Dad's house where they are getting prepared to leave for Boston next Tuesday. Dad, Abbey, Maryah, Mo and Azaria are heading out to the farm for a big family reunion, some fun at the beach and they will get to see cousin Cari and baby Kyle! They will have a great time I'm sure!

Maryah began summer tutoring on Monday and unfortunately through the end of July she will not get to sleep in since her bus comes at 6:28 a.m. Yuck! That's no fun! Well...at least she will get a little vacation in next week and then again for the entire month of August. Not too bad!

There were scans today (PET and CT). We won't have results maybe until Monday. They take a little longer when we are waiting for the PET/CT fusion. Dr. Slomiany will get back to us ASAP with results.

Maryah is having a great summer and I am SO GRATEFUL! What a blessing it is that both girls are having fun, swimming, playing with friends, dancing, loving life and SMILING all the time!!!!
It is so different than the sick, nauseated, crappy days we have struggled with for what seems like a lifetime. I thank God every day for these days we have and I will never ever take them for granted.

I hope you are all having a wonderful summer and smiling as much as you can!!!

Love and Blessings,
Rachel/Mama

FRIDAY, JUNE 29, 2007 4:40PM

MARYAH'S SCANS ARE ALL CLEAR!!!!!!!!!!!

Tuesday, June 19, 2007 3:37 PM CDT

Hello!!

Maryah Here. I am so sorry I haven't written in so long I have been so busy ever since school has gotten out and have not been able to find the time to sit down and write but I happened to have a couple minutes so I thought I better stop and do a quick update. This week I am at Angie's helping her out with the little ones. They are so cute. She has a 5-month-old baby and so I have got the pleasure this week (and last week) to take care of her. I actually just got done feeding miss Lucy some rice cereal and pea's and for desert bannana’s. She is the cutest thing ever. I have been waiting for this week to come because this is the very first week at my new house in Cottage Grove. We spent our very first night there last night. I love it there and cannot wait to start a new family with Dan, Tori, and Libby oh and of course we can't forget little Nick who will be here in just a couple weeks. I can't wait! Well, I am going to go and play outside with the kids. I hope you all have a great rest of the week and I will try to write again next week. All my love and God Bless.

PS: Just to let everyone know I will be performing my solo/Trio at the St.Paul River Center on Tuesday June 26th @ about 6:00pm. All my love God Bless (again).

Maryah

Monday, June 11, 2007 11:28 AM CDT

Well...it is officially summer break for Miss M. She is spending this first week at Angie's helping out where she can with the kids and doing a little work before getting ready to start summer classes.
We've been busy with our move and working on getting Maryah and Morgan's things moved over to Dan's this past weekend. It's been slow going but it will get done before we know it.
Maryah is scheduled to have more scans on June 28th and we should have results the next day if not the same day. She will be having the PET and CT scans done.
We continue to give her the oral Etoposide and it seems that everything is going rather well.
This week is a turning point for Maryah as she is off of any type of pain killer for the first time in over a year and a 1/2. This is remarkable and rather joyful that she is in no pain! We are so thankful for this accomplishment.
Maryah is also going to be performing in her first Dance Competition in four years on June 26th at the River Center. Morgan is actually dancing in her first EVER competition on June 28th at the River Center. It will be a busy week and then the girls are off with Dad, Abbey, Azaria, Nuna and family to the farm out East for a big family reunion. They should have lots of fun and excitement.
So far it has been a fun and busy summer and we are looking forward to all the summer has yet to bring with new baby Nick joining the family and getting settled in to our new home in Cottage Grove (by the way for those who were concerned...Maryah and Mo will remain in their St. Paul schools since they live with Dad every other week in St. Paul).
We hope you and your families are enjoying the summer as well. Be well and have fun!

Love and Blessings,
Rachel/Mama

Tuesday, May 22, 2007 1:49 PM CDT

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Hi all!

I haven't updated since before the recital but thought I would get a message out. Miss M my social butterfly has been quite busy at school, dances, baseball games and rehearsing for dance competition at the end of June. Dianne surprised Maryah at last Saturday's recital by telling her that she had entered her dance in the National dance competition at the St. Paul River Center. Maryah is very excited!!!
We are preparing for the summer and our move to Cottage Grove. As most of you know Dan and I are getting prepared for the newest member of our family. Dan and I are expecting our son to arrive in the end of July and some time prior to that I need to sell my house and get things prepared at Dan's house for our move. Maryah and Morgan are a bit sad to leave the house we have lived in for the past nine years but they are excited for all the fun we will have as we increase the size of our family.
Nine years ago Maryah and I together on a drive home from daycare/work saw a "For Sale by Owner" sign and followed it to what is now our house. When I saw it I knew it was the house I wanted to start out in. It was just perfect and very nicely set up for our little family. I remember pretty clearly that Maryah said "I like that house Mama, can we get it?" and I knocked on the door that very moment. I went through it and decided the very next day to make an offer and quickly taught myself how to buy a house without a realtor since that was the only way the seller would accept my bid over the other three he had.
Clearly someone was watching out for me because I managed to muttle my way through and several months later we were moving into our little house.
So, it is with a great deal of emotion and many, many fond memories that we say farewell and look ahead to the new memories and joy filled days in our new house.
Maryah is also preparing for a summer study program and all the other fun and exciting things she will do this summer.
I am proud to say in this journal entry that for this short period of time our life has felt like just the normal version of chaotic. It's nice and although there are never any guarantees it is still nice that we have eachother and that Maryah is mainly healthy, happy and enjoying life.
I continue to pray for Maryah's strength and healing. I pray that the cancer will go away and stay away forever. I pray that life will feel like "normal" for her each and every day. Please join me in that prayer!

Thank you all ever so much for continuing to visit and leave your messages. It is so encouraging and gives me such great comfort to know that you are each out there supporting our family.

I will get Maryah back here soon so she can update you herself. I will also work with Megan (the new Caringbridge guru) to get a slide show of the FL pictures up.

Have a fun and safe holiday weekend!

Love and Blessings,
Rachel/Mama

Friday, May 11, 2007 12:09 AM CDT

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NOTE THE CHANGE IN TIME FOR TONIGHT'S SHOW!!!! IT'S 6:30 P.M. START TIME!!! SORRY FOR THE CONFUSION.

In case you did not know...all scans were clear!!!

Tonight (6:30pm) and tomorrow (3pm) is the recital at Sibley High School in Mendota Heights. This event is the culmination of many emotions and hard work and we invite you to attend.

Maryah started dancing at the age of three. Going every Saturday to her dance class was my absolute favorite part of the week for years...and then when she was nine she got cancer and could no longer dance the way her spirit needed. We watched her battle through the worst type of pain - bone pain. We sat with her as she quietly wished to be free from limitations and to just be a dancer. We listened as she cried and said "I just want to dance".

Then she got better, they said the cancer went away, and she helped teach dance class to the little ones that she was in years ago...only to learn nine months later the cancer came back a second time. BUT Maryah would watch her little sister "shake it, shake it" in her dance class, give her big hugs afterwards, and tell her she did great. She was very supportive of Mo and lived through her moves, but you could see in her eyes that she missed it.

Fast forward past the third diagnosis and surgeries and treatments and pain and all the daily nuances and struggles...SHE IS DANCING!!! Maryah will be performing a SOLO dance at the recital and receiving a 10 year award.

"She dances in a ring of fire yet throws off the challenge with a shrug". She changed cancer to dancer. Keep dancing baby!

Dad/Ringman
-We'll post pictures

Thursday, May 10, 2007 10:20 AM CDT

Good Morning!

I thought I would update again to give some quick information that I forgot to update on earlier.
Maryah did have a PET and CT scan on Tuesday this week. As of right now I do have an "all clear" on the CT but we are waiting to hear from Dr. Slo on the PET results. I expect to hear from him today so hopefully he will get back to me soon and I will get a note up to let you know.
It's been a good but hectic week as I have been fighting a terrible sinus infection for the last 7 days and we have TONS to do between the big 13th birthday and preparing for recital it's been a little busy.
Thank goodness for help from family and friends. I am finally getting back on my feet again today and am back to work trying to get done here what has been waiting since before vacation. UGH!
I am still having a hard time believing that I am a mother to a teenager but it is slowly sinking in and as I find it harder to get out of bed in the morning without groaning over some ache or pain I guess it becomes all that much more realistic...I'm getting OLD! Lol.
As Zach posted on the site my M&Ms have their recital this weekend at Sibley High School both Friday (7pm) and Saturday (3pm). Mo will be doing several dances and Maryah will be doing her dance as well (so cool to watch). It's amazing what that crazy "bad" leg of hers will do! You'll just have to come and see.
Of course Dad and Mo Mo are dancing together and I'm equally as excited to see Zach on stage. It will be loads of fun!
Hope to see many of you there. Have a great weekend and I'll come back and post a P.S. when I have results for the PET scan.

Love and Blessings,
Rachel/Mama

___________________________________

P.S. ALL CLEAR ON THE PET SCAN TOO!!! YAY!

Monday, May 7, 2007 11:23 AM CDT

Happy Birthday to you, Happy Birthday to you, Happy birthday dear Maryah, Happy Birthday to you!!!
Well, it was thirteen years, 1 hour and 20 minutes ago that my life was changed forever. For that I am forever grateful. I can't hardly believe that Maryah is a TEENAGER and yes that does make me feel older for sure!
I am so blessed to have such wonderful kids and I am looking forward to these upcoming years of challenges and surprises with Miss M and the others. I can't wait to see what lovely things this year will bring for our girl.

Thank you Maryah for changing my life, thank you for teaching me as much as you have. Thank you for making me smile and yell and always remember to never take for granted! Thank you for teaching me to be a mother. If not for you I would not be the person I am today. I hope that I make you as proud as you make me.
Thank you for being my daughter, my friend, my sunshine and my great joy!
I look forward to today and every day this next year! You are my champ and my right hand gal.
I love you with all my heart and so do all of your family and friends. You have touched all of our hearts. Don't forget to keep helping, giving, loving and being yourself. You are an amazing young lady.

Love and Blessings,
Rachel/Mama
______________________________

We would like to invite you to Maryah and Morgan's dance recital this Friday (7:00pm) or Saturday (3:00pm) at Sibley High School in Mendota Heights. Tickets are available. Maryah will be doing a solo dance and Morgan and I (dad) will be doing the parent/child dance. Hope to see you there.

Friday, May 4, 2007 3:05 PM CDT

Hi again!

We are back in action here in Minnesota with lots going on and lots to update!
First off I will be working to get pictures up very soon from Disney. We had an EXCELLENT trip and were on the go pretty much the whole time.
Let me mention that being on the go that much is not so easy when you are seven months pregnant!!! Thank goodness the kids have short legs and moved slowly so Mr. Long Legs (a.k.a. Dan) had to slow down for us.
We visted the Magic Kingdom and Epcot at Disney World, we visited Sea World, NASA and Cocoa Beach. All were fun in their own unique way.
Give Kids The World Village is EXTRAORDINARY!!!! I have never experienced such a place. The people were outgoing and helpful and were there to do nothing other than help us be comfortable and have fun.
The girls ate ice cream at the the all day ice cream palace twice while we were there, they rode the carousel, played in the castle, the pool and rode the train as well as went on a horse drawn carriage ride.
There was so much to do and see in just five short days. It was really hectic but we all had fun. We all agree that NASA and going to the ocean were our favorite times.
For Tori and Libby it was thier first trip to the ocean and they loved it. All the girls had fun as the splashed and played in the waves and collected many seashells. We all laughed alot and had a great time. We are equally as glad to be home again.
Since we've been home Maryah has made a decision along with her Dad and I that she will not be having surgery to replace her prosthesis in June. She has made the decision to wait until the winter months when she really has to be inside anyway. This was a great decision on her behalf because Maryah has recognized that this is really her first summer where she can just be a kid and enjoy the weather and her friends all summer. Dr. Clohisy had given her an option to have this surgery and had told her a while back that it is not necessary because the rod in her leg is sturdy and will serve the purpose for quite awhile. The prosthesis will ultimately allow her to have two legs the same length and possibly some bend in the knee (very limited) but it is most certainly not something she HAS to have done. So...I am proud of her for making a decision for herself that makes her happy. That is really what quality of life is all about right?
Next on the agenda...Maryah will be DANCING again after four+ years of not being able to actually DANCE on stage for recital Maryah will be performing a trio with her friends Ali and Ali at Sibley High School this coming weekend.
Of course Morgan will be dancing as well, not only with her class but with her big, goofy Daddy. Maryah and Morgan will both dance two days. The first show is Friday, May 11th at 7pm and the second is Saturday, May 12th at 3:00 p.m.
Tickets are on sale at the door when you arrive and you are welcome to come and enjoy the show if you wish.

Sibley High School is located on the corner of Hwy 110 and Delaware. If you need further directions get in touch via e-mail with Dad at zacharytift@yahoo.com or me at racheltift@yahoo.com.

I hope the week has been good for all! Thanks for coming by and checking in again. We are so happy and grateful you do!

Love and Blessings,
Rachel/Mama

Thursday, April 26, 2007 10:45 AM CDT

Good Morning!

We are off to Florida/Disney tomorrow morning!!! This has been a long awaited trip. Many of you will remember that Maryah was set to go to Disney with her dance crew at DDs for National Competition last June but was unable to attend after they diagnosed the infection in her leg. It was saddening and unfortunate but now we are here a year later getting ready to get on the plane and go see Mickey!
There are many people who made this trip possible but I would like to remind you about our dear friend Megan who once again came through and made this happen...not only made it happen but made sure it will be an EXTRODINARY trip for all of us. Through working with our friend Ron Stanchfield at Miracles of Mitch they have made sure that this trip would happen and be a blast!!!
I called Megan the day of Maryah's last biopsy showing that the Ewing's had returned in her hip. I simply cried and said I need to get my baby to Disney...I want her to have fun. That was all I needed to say. It was within days that the wheels began turning and the trip planning was in motion. I am so grateful and blessed to have someone (well, really so many people) that do so much work every day to insure that our family is comfortable and happy and that we are able to live life as "normally" as possible.
So...thank you! Thank you to all of you who are out there behind the scenes and making life livable for all of us. I'm not sure how we would do this otherwise.
We are off...Maryah, Tori, Morgan, Libby, Dan and I are going to get on that plane tomorrow and come back on Tuesday after the trip of a lifetime.
I can't wait to see the smiles and hear the laughter...it is long overdue!
Have a lovely, warm and sunny weekend. I agree with Maryah your messages are always uplifting to us. Thank you for continuing to leave them.

Love and Blessings,
Rachel/Mama

P.S. Thanks for your prayers for Cariann's little guy, Kyle. Keep praying that he will get to come home with mom and dad tomorrow healthy and happy!

Saturday, April 21, 2007 8:47 AM CDT

Hello everyone!

I just got back from Wolf Ridge yesterday. I had so much fun. I was really proud of myself because I made it the whole five days without having to leave. I was also really proud of my self because I did the Ropes course and the rock wall. The ropes course is this bridge about 30 feet off the ground and you have to walk across it and I'm sure you all have probably heard of a rock wall before. Anyway , it was a blast! Well I am going to go and hangout with my family. All my love.
Maryah

PS.I wanted to thank all of you for taking time to write to me everyday. It really means a lot to me. God Bless.

Sunday, April 15, 2007 3:08 PM CDT

Good Afternoon and what a BEAUTIFUL spring day!!!

We are getting Miss M packed up for her trip with her classmates to Wolfridge (or for those of us who are a little older and more familiar with) ELC. She will be gone for five days with her class to learn about the environment and wilderness of beautiful Northern Minnesota.

Thankfully Maryah is able to go on this trip. We weren't sure since it is rather strenuous and there still will be pieces she won't be able to participate in fully but she will be able to be there thanks to Nuna Elaine accompanying her. Nuna is not only her grandma but Nurse, caretaker, and environmentalist amonst many other of her talents. Since she is able to go along with Maryah she can administer all her meds and help her along if there are events that she can't participate in.

I remember when I was in sixth grade (boy that was a LONG time ago as Maryah reminds me) I attended Wolfridge/ELC also and I was soooo worried I would be too homesick to have fun and then I had a FABULOUS time and I have some very fond memories of the trip.

I hope that Maryah will have that same FABULOUS time and her own great memories.
So as we finish our packing and getting all ready for her early morning departure we are wishing for an uneventful and happy trip for Maryah.

As far as the cancer crap goes...I suppose I should give an update...

Maryah is still doing the daily oral chemo and will do more scans to check things out on May 8th (day after her birthday).

When school is out she will have surgery to replace her prosthesis if the infection is gone from her leg (keep your fingers crossed). After surgery she will have to really work hard to get walking on her "new" leg and working to bend the knee joint even just a little bit. She will never be able to get a full bend again because of all the scar tissue but even a little bend is far better than none at all as I am sure she can attest after having this rigid leg since November.

After surgery and recovery we will look at possibly doing another regimen of chemo (two new drugs). If we don't do that we will look at keeping her on the oral chemo for a longer time.

We were given another option that has been successful. It is a five drug cocktail but one of the drugs included is Thalydimide. If you've ever heard of this drug it is very dangerous to a pregnant woman. It was given to pregnant women back in the 60s for treatment of nausea. This drug caused severe birth defects and even fetal death.
I would not even be able to handle the drug to administer it much more it would be very dangerous if Maryah became ill or even just used the bathroom in the same house as me. We all agreed it is not a good choice right now. It is something we may look at later down the line however.

So, there is the update on the good and the ugly! I always like to accentuate the postive but there is that ugly side of cancer that is unfortunately still a part of our lives to update you on too.

Thanks for all those that continue to check in. We are still in a battle and although things seem very normal and nice we still storm the day knowing that each day we have a beast lingering that we need to destroy. I am forever confident that we will and each day will end with good overtaking the bad!

Have a lovely day and week! I will ask Maryah to update upon her return with news of her trip to Wolfridge.

Love and Blessings,
Rachel/Mama

P.S. Stay prayed up for cousin Cariann's new addition Kyle. He was born this past Wednesday a bit earlier than expected. He was 6lbs 5oz and 17.5" long. He needed a little help with his breathing due to the early arrival but he is doing well and holds the same fighting spirit that his cousin Maryah does. Mom is on the Boston Marathon route for the best viewing tomorrow. Please keep Kyle, Cariann and Aaron in your prayers!

Thursday, April 12, 2007 4:05 PM CDT

I have it on my heart and mind to express how proud I am of Maryah and how amazed we all are at who she is and how she moves through life despite hardships she endures. I am writing this here because I know you all share my sentiments.

"She dances in a ring of fire, yet throws off the challenge with a shrug". - Jim Morrison

I love this quote because the images of dancing in a ring of fire - this ring of fire - brings up feelings of a deep seeded need and desire to keep moving even though there is perceived as well as real danger; that even though others see some danger, she moves with conviction because even within danger there is opportunity; that even though there may be very real danger, she prays the blues but her light reaches that which she sees and feels; that even though the situations or times may be unnerving, the clash of a multitude of emotions perpetuates her further around her life circle; that as her life embraces who she is and where she is within this circle of life she can show others how to dance freely; that there can be an ebb and flow to life and as she progresses she carries us through the dance; and the more she gets to learn other dances, she knows God is love and grace and this is enough to throw off the challenge with a shrug.

We love you Maryah,
Dad

_______________________________________

Saturday, April 14, 2007 11:45

Just got back to Auntie Jo's from Dorian's karate class. He will be black belt very soon!
Later we will be going to my "sister"
Libby's brthday party. We might miss most of it because we have another birthday party for Shayna's friend, Olivia. We will be cosmic bowling at the Mermaid. Then back to Dan's.

I slept over at A. Jo's last night cause I haven't seen her in a million years!! I missed her and Uncle James, Dorian, and Shayna tons!

Thanks for the nice words Dad...you mean so much to me too!

Well, gotta run and get ready to go. Take care and God Bless you all. Have a great rest of the weekend.
Love, Maryah

Sunday, April 8, 2007 7:50 PM CDT

Hey everyone!

Happy Easter!! How is everybody?? I am so sorry I haven't written in so long. I have been so busy I can't even begin to tell you. April is a very busy month for me. Today is also a very busy day for me. We woke up this morning and went to mass then after mass we went to the Olive Garden for Easter lunch and then over to Abbey's Parents house for desert. It was a very good day. Anyway, I am going to go hang with my family. I Promise I will write agian this week. All my love. God Bless and Happy Easter!
Maryah

Sunday, April 1, 2007 9:58 PM CDT

Good Evening!

It has been a fun filled busy weekend for us. We started our weekend with a rainy bar-b-que on Friday night that brought some fun and exciting news for Maryah, Morgan, Libby and Tori. Turns out that Dan and I will bring yet another new addition to the group! Our fifth will be here in July. Dan and I have been jumping out of our skin with excitement to tell the girls but just needed to wait for the right time. Well...it was good timing. They were all so excited, screaming and yelling and talking to my tummy.
It's been fun to hear how they plan to initiate the baby into our family. More to come I guess!!!
Saturday brought another rainy day but we had a blast inside at the Shrine Circus. What fun. I haven't been in years and niether had Dan so we enjoyed it just as much as the kids. We had a nice supper with Grandma Sue and John and then went off to home to end our night coloring Easter eggs. Off to bed early for our big day today.
We left early after breakfast to get to Little Falls for cousin Arielle's First Communion. It was a nice family filled day and I always enjoy mass on Palm Sunday. With Easter just a week away we had an Easter celebration with my family. We were only missing Auntie Jo Jo and Uncle James who are in Florida with Shayna and Dorian for ten days. They had to go prepare FL for our family!
So it's been a long and busy weekend but full of fun and excitement.
Maryah will be on Spring Break this week from school so maybe she will get in here and update the journal a bit herself!

Hope you all had a great weekend too!

Love and Blessings,
Rachel/Mama
________________________
Hey everyone!
Maryah

Wednesday, March 28, 2007 9:40 AM CDT

Hello,

Right now I am at school learning how to use naturally Dragon speaking. Today it is working kind of strange. I think it will help me a let in the future. If it works right. Right now I am showing my teachers how to use it. I think that all the teachers think that it's kind of neat.

Next week I am on spring break. I don't have any plans yet. I think I'm going to spend the week with my Nuna. Mo really wants to go to a movie so we might do that too.

I am going to be staying with Nuna over spring break and we will probably do some really fun baking. We usually make bread and cookies. My Nuna really likes to go for walks, so we'll probably go on many. Since I will be at my Nuna's over spring break I will probably be able to sleep in, in the mornings.

Well, I am going to get back to school now. I hope you all have a great rest of the day. All my love. God Bless.

Maryah

Monday, March 19, 2007 11:25 AM CDT

Good Morning!

I just thought I would get an update in before the week gets too hectic.
I wanted to let you know how proud I am of Maryah. Although difficult Maryah made the decision to shave her head again on Saturday night.
We did not expect her to lose her hair but with the amount of chemo left in her system it's likely she just had residule side effects.
Maryah's hair began to fall out dramatically last week and by Saturday it was coming out in clumps. It was hard for her to watch and hard for me to be positive that it would stop. So....she mentioned doing it and then I asked her to go take a shower, wash her hair and think about what she really wanted to do.
Maryah came downstairs after her shower and stated "I thought about it hard, I prayed on it and I want to shave it off...I just can't watch it fall out like this."
I respect Maryah's strength and dignity so much. It makes me so proud that she can make such a difficult decision with such strength and grace.
We shed a few tears as Dan took the clippers to her hair but in his light and caring way he made some jokes about leaving half or a strip of her hair for fun. We were all able to laugh a bit and it made it a little easier. By the next morning we were used to that beautiful bald head again and other than Libby staring at Maryah like "what did you do with my Maryah?" (she was sleeping while the shaving ceremony took place) it was fine.
Maryah has complained of her head being cold again but I doubt that will last long as the warmer weather rounds the corner.
We are all getting psyched for our Disney trip and even more psyched for the warm weather. We all have a bit of cabin fever and it will be good to play outside in the sunshine and warmth.
Maryah will meet with Dr. Clohisy this Friday afternoon to determine if they will continue the new antibiotic through surgery time or if she will be done after this week.
She is back on second round of oral chemo starting this past weekend and she's feeling a bit tired and nauseated but not overwhelmingly so.
Radiation is done as of Tuesday this week. We are thankful that is at least coming to an end.
I will update if anything changes other than that I'll be back with more next week.
Hope you all have a beautiful week!

Love and Blessings,
Rachel/Mama

Wednesday, March 14, 2007 10:06 AM CDT

Hi again!
I am finally getting time to sit and update the journal after a busy week running, running!
Last night Morgan had her first practice for her parent child dance. I stood in for Zach for the class and it was rather humorous. My dance teacher who now teaches my lovely girls had to ask me if I actually remembered my steps...it's been A LONG time! It was funny and Morgan got a kick out of it.
I also had another proud parent moment when I got to then go to the other room at the dance studio where Maryah danced for the first time in several years. Alesha was teaching her new steps for a dance she will perform in this years recital. She will be dancing in the recital for the first time in almost four years. She did so well and it was so fun to watch. She hasn't lost her grace or style one bit! I was proud and reduced to tears (of joy of course).
Although we've had a busy week we are each so glad for the return of our warmer weather. It makes us all happy to remember that summer will be here soon and the warm weather here to stay.
Thanks to a lot of hard work by Megan and the generosity of many including the Miracles of Mitch foundation we will have the opportunity to take Maryah and the kids to Disney at the end of April. If you remember Maryah was supposed to go to Disney last summer with her dance studio for the competition. Unfortunatly those plans changed when we learned of her staff infection and the necessary treatment.
This will be quite an adventure and we are looking forward to it. We'll keep you posted as we near our departure date and of course we'll post pictures when we return.
Maryah has unfortunately begun to lose some of her hair. I am not sure at this point if it will all fall out or if she is simply thinning quite a bit. I am hoping for the latter and I know she is too.
We will have her scanned soon and make sure all is going okay with the current treatment plan. Maryah will be done with radiation very soon (within the next week or so). It went by very quickly and now we will just continue with the oral chemo to try and keep the cancer away.
Keep praying we will need the prayers!
Hope you are all having a great week! Enjoy our warm up!

Love and Blessings,
Rachel/Mama

Thursday, February 22, 2007 12:05 AM CST

Hi all!

It is Thursday already! This week has simply flown by. Between work and running kids to this and that thing we've all been very busy! I'm sure you can relate.
So news for the week: Maryah is in a fashion show tonight that was set up by one of her favorite nurses in radiology, Mary Kay down at Childrens. The show is part of a larger third annual fundraising benefit being put on by a women's guild to raise money for Children's hospitals.
Maryah was given a trememdous opportunity to model for the GAP. She was treated like royalty by a lovely sales woman named Angie at the Woodbury Lakes GAP and picked her final outfit last evening. I won't tell you about it because I plan to post pictures of the evening for all to see. Trust me she looks like a rockstar! I'm amazed by how beautiful she is each time I look at her (of course I have mommy bias).
So tonight is her night to shine like the star she is. We'll be there to cheer her on!
Also, big news!!!!! Dr. Clohisy gave Maryah the ok to put some wieght on her leg. She will finally be able to do some walking without crutches for the first time in over a year. She is thrilled and went right to it like she never stopped. She has a limp from her leg lengths being different but that certainly didn't stop her from quickly walking right up to Dad's door last night after the fashion show rehearsal. Great news!
Next, I got a question from Maddie's friend Christine in the guest book and I have gotten lots of questions in person so I am going to try finally to explain our family dynamics for everyone who isn't closely involved with us.
Zachary and I have Maryah and Morgan from our relationship/marriage of 11 years. My dear friend Zach and I were not quite in a good place to be married and we decided to split ways about four years ago. We remain the dear friends and co-parents to our beautiful girls. As of recently we have added on to our family. Zach has met a wonderful woman and beautiful soul named Abbey and they share a gorgeous baby girl named Azaria who was born just this past November. I have met my love Dan who is just the light of my life and his beautiful daughters Tori(10) and Libby (3)this past summer. We have created our little "family" of four beautiful daughters on our end.
So....Maryah and Morgan have this HUGE support system and wonderful, loving family all around them all the time. That family of course includes so many more, grandmas and grandpas, aunties, uncles, cousins and friends. This extended family extends to all reaches of the globe. How lucky are we. So this family that began long before Zachary and I continues on and we are so fortunate to be part of this big ol' "mess". The truest blessing is family and friends.
I hope that helps explain. I have talked to Zachary a bit about getting family pictures so we put faces with names.We're working on it.
Have a great rest of your week! I likely won't update again until early next week.

Love and Blessings,
Rachel/Mama

P.S. Don't forget to visit Meg's Relay For Life site through the link below. Thanks!

Monday, February 19, 2007 8:29 PM CST

Good Evening!

I wanted to get this journal entered this morning but the morning and then the afternoon slipped away from me as usual as the day became busier and busier with the meetings, projects and issues to resolve for the day!
I had help however...Miss M came along and then at lunch we were lucky enough to get a visit from our beautiful family. Dan brought the rest of the crew (Tori, Morgan and Libby) for lunch. Tori and Morgan also spent some time doing a bit of office work as my HR Assistants today. They did well and thankfully the three of them kept busy enough so we all got our work done.
After our busy, busy work day we went along to Maryah's first Radiation session. It is helpful that although she has to go daily it only lasts about 10 minutes total to get there, get radiated and get out! Not too bad.
Maryah and Morgan then went off to be with Daddy, Abbey and baby sister Azaria for the week and they were SO excited to be back with Dad! The rest of us went off for some dinner and to Tori and Libby's dance class.
We are now all home and resting finally after a LONG day! This will be the standard schedule with the exception of the gals coming to work. School/work, radiation, home, dinner, homework, bed time and start over again. Shouldn't be too bad!
Maryah also began her oral chemo today. Zach and I will be teaming up to watch for new side effects from both the radiation and the etoposide. Hopefully there will be few if any at all!
So we are on the road again, following this path well laid for us and thankful for every minute our great big growing family has together.
Thanks for being a part of our days, a part of the longer journey and for traveling a curvy road with us.
We will keep you updated as we know more and hopefully Maryah will get back to her duties of updating on her own!
Hope that everyone has a great week!

Love and Blessings,
Rachel/Mama

P.S. I have added Megan's new 2007 Relay for Life link below for anyone who is interested in checking out the DD FROGS and Meg's site. They are working to raise money for the American Caner Society. Last year Maryah had a blast being part of the relay and we are looking forward to it again this summer!

Wednesday, February 14, 2007 5:27 PM CST

Hey everyone!

Happy valentines Day! I am not going to stay long because I want to be with my family but I thought I would write quick and say Happy V-day. I hope you all have a great evening. All my love. God Bless.
Maryah

Sunday, February 11, 2007 9:24 PM CST

Hi and welcome to the new week! It is Sunday late evening and I am preparing for the upcoming week and it dawned on me that I should prepare also by sending out information about our latest news and plans for the upcoming weeks.
The final results of the bone marrow biopsy are "all clear". That was fabulous news to begin our weekend. We then went on to find out that Maryah will begin her radiation a week from Monday and we will look to start her oral chemo drug this week so we can try and diferntiate the side effects of both by starting at different times.
Hopefully the oral chemo won't cause too many side effects and it will be fairly easy.
For the first time since June 2006 Maryah is off of IV meds twice per day. That means that she has changed her IV antibiotic to an oral version and she no longer has to have her port accessed. She has had her port accessed with a needle since last June. Every day and every night with the longest break is when I or Dad change the port and she gets a few hours with out having to have it in.
No more needle! Yeah! That was equally good news to begin the weekend.
This week Maryah will return to her friends at school and get back to the life of a 7th grader. I also realized that Maryah will be a TEENAGER in just three months! AAAAHHHH!!! When did I get so old? I guess 31 isn't as old as it seems to feel to me at the moment.
Megan's poem in the guestbook about parents of cancer kids being "eggs"...right on! Can't think of a better way to describe. In fact last week I spent a week pretty miserable finding it hard to get back up after this knock down. I can feel that I'm starting to put the pieces back together again this weekend and I am sure by going back to work and getting back into my day-to-day just as Maryah is doing I will feel better.
We all break sometimes, something happens and then more comes and the stress seems never ending, the problems with no end and then you realize that no matter what life hands you if you have faith and believe there will be a better day and NO ONE and NO DISEASE can get the best of us. It is impossible if we don't let it!

Carpe Diem!

Love and Blessings,
Rachel/Mama

Tuesday, February 6, 2007 6:31 PM CST

The preliminary report said the marrow looks good! They will call me back tomorrow with the official results...hopefully it will show the same good news.

Tomorrow I'll bring Maryah to see Dr. Farniak so they can measure her hip for where the radiation treatments will be focused. We're not sure when she will start radiation but it will be soon.

Lastly, tomorrow will hopefully bring news of when M will begin oral chemo (Etopicide - not exactly sure of the spelling). They say this chemo will not make her sick like she was in the past so we want to start this asap.

Maryah's spirits overall are good and strong. Being with her makes it easier on us. She is holding us up...so Paul was right when he said "through weakness is strength".

We'll continue updating as we learn. Stay prayed up. Take care and God bless...

Dad

Tuesday, February 6, 2007 11:13 AM CST

Good Morning!

Hope everyone made it to work or wherever you had to travel to this morning safely. It certainly was slippery on the roads today.
I'm just updating to request prayers for Miss M. She is having her bone marrow aspiration this morning to determine if the cancer has spread to her marrow. We are praying it is only that one spot.
I will update you with results when I have them. Thank you!

Love and Blessings,
Rachel/Mama

Sunday, February 4, 2007 7:22 PM CST

Hello!

Happy superbowl weekend! My favorite time of the year! We are over at Dan's house right now watching. We have so much food though for just six people. Well the commercial is over now so I am going to go watch now. All my love.

Maryah

Thursday, February 1, 2007 5:16 PM CST

Hi again,

Well we've made it to Thursday. Maryah is still having some pain at her incision site but she is getting around pretty well. She's still pretty tired though. School is pretty much out for this week.
Zachary and I met with Dr. Slomiany this afternoon. We discussed what options are out there and what we will begin with to treat Maryah.
The good news is there are still options! That makes us happy. We're not just doing something to do it. Since Maryah is still on this new antibiotic and she is being treated so that we can replace her prosthesis we will keep the treatment conservative for now. We all agree that it is important to make sure the infection is gone and get her a new prosthesis before we start any combination of drugs.
The options we can look at for after that phase are

1.Antiangiogenesis - A five drug cocktail that includes two chemo drugs I am familiar with and three other drugs I am still reading about. These are all taken orally and can be taken for up to 18 months. They are currently being used on many kids in the clinic that have brain tumors and are proving successful. This combination has also proven successful with solid tumors (like Maryah's). The protocol is out of a Sarcoma center we are very familiar with in our favorite town..."Bean Town". Dana Farber has developed this protocol. The point of this treatment is to cut off cancer cell growth at any stage.

2. Two new chemo drugs that Maryah has not seen yet. One is oral given for five days monthly and the other is a daily IV. This would go in 10-12 cycles as her other chemo treatments have gone. There have been Phase II studies of these drugs that have proven successful in recurrent Ewings.

I have done some research with the major Sarcoma specialty centers around the nation and these seem to be the best options. As we go along there are always new things developing for Ewings. We have one of the best Sarcoma specialty centers right here in MN...the U of M. We are certainly lucky.

Neither of these treatments will be as harsh as Maryah's previous treatments. She will have some side effects and some not so pretty. She may not lose her hair at all and she likely would not be near as sick.
The overall goal in our conversations today was to figure out a way to treat Maryah effectively and still keep her in school and living a healthy, productive 12 year old existance. I think we may be able to do that with some of these options.

Dr. Slomiany is good at working with us and looking into things. He will do his research and we will do ours over the next three weeks or so until the prosthesis is put in and together we will decide the best avenue for treatment.
Everyone is optimistic and although they are sad to see Maryah return down at Hem/Onc...just like us they are touched by her and they too hold her HOPE high!
That is all I know for now. It has been a long week and we are ready to keep the fight going! We just need a little refueling and off we go! Join us will you?

Love and Blessings,
Rachel/Mama

Monday, January 29, 2007 4:38 PM CST

5:15 P.M. January 30th
One last message on this journal and it is a good one!!! We are GOING HOME TONIGHT! Maryah has decided to make the journey to home. She wants to watch American Idol and sleep in her own bed. I get it completely! Me too!
We're on our way home! Talk to you soon!
YAYYYYYY!!!!!!!!!____________________________________
Tuesday, January 30, 2007 7:41 AM CST
Hello, Maryah here. I'm not going write much but I thought I would write and let everyone know I'm doing alright. All my love. God bless...
Maryah
___________________________
Maryah,
After your mom came down to the hospital I went home to shower and wait to pick up Bella. It's funny how when you hurt inside that you want to run somewhere, as if going "somewhere" will help you feel better. In these times over the last three years though we have learned to not run, but to stick and stay, and stay and pray. So I turned towards the Word and when I opened the BIBLE (Basic Instructions Before Leaving Earth) and I was lead to 2 Corinthians, chapter 12, verses 8-10. In this time of you having to battle through cancer for the third time, I want you to hear Paul when he said, "Three times I begged the Lord about this, that it might leave me". God said 'My Grace is sufficient for you, for power is made perfect in weakness'. Paul replied I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. Therefore, I am content with weakness, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong".

Maryah, unearned suffering is redemptive and many people are finding redemption in your struggle, including me. You have always had a special spiritual presence about you, even at a very young age. As we move forward I will begin to share some of those stories. But for now I am calling on you to open up and talk with people about your walk, your path, your thoughts, and your relationship with God in an effort to bring us even closer to the Great Spirit. Even in times when you feel weak, THIS is the stuff that will remind us of STRENGTH.
___________________________
Maryah is out of surgery and resting. We are still waiting for the official results of the biopsy, but Dr. Clohisy and two of his colleagues think the spot is Ewings sarcoma.

Maryah had a small incision on the back of her hip and they were able to remove all of the tumor. The not-so-good news is there are not many treatment options available since she has already had 26 total rounds of chemo and 25 sessions of radiation. We are meeting with her primary doc, Dr. Slomiany, on Thursday to determine what next steps are available. The good news is the spot was small and they removed it.

She still has fight left in her...enough to fight the good fight. When she was coming to and asked if she had cancer again we told her they found something but removed it. Upon hearing the news for the third time now that she had cancer this time she did not cry, she seemed a little annoyed. Tonight I'm sure those feelings will ebb and flow and we will talk and just be with each other while the news soaks in.

We thank God for all of you in Maryah's life. I'll have Maryah write to you when she can. Take care and God bless...
Zach/Dad/Ringman
_______________________________________
We are comfortable in Maryah's room. Our last trip to the U of M in November, for the leg surgery, we toured these COOL new rooms with huge big screen plasma tvs and cool lighting effects. They have EVERYTHING you could want in your own house. Well...Maryah gets to stay the night in one of those rooms tonight.
See, when there is some bad it is always followed by blessings. I have found that each time we have thought things were such a struggle something comes to bring us extreme peace. Tonight it is as simple as this awesome room and Maryah's rest.
Zach mentioned she has fight in her...she definately has fight in her. She will fight anyway she can and we will be beside her fighting too...all of us, Dad, Abbey, Mo, Azaria, Dan, Tori, Libby, me, Nuna and all of us who have walked through this three year journey with Maryah. We are all fighters.
My mom once told me I come from strong, tough women, "tough stock" she called them...Maryah comes from that same "stock". On we fight. Upset that this disease thinks it can get the best of us. But she will fight and be the champ, yet again.

We are at peace, please be at peace also. We will update you with more news after we have a game plan. When Maryah is up to it she will be here to tell you herself just how she will fight and how wrong this disease really is!

All our love is surrounding Maryah tonight and we feel your love surrounding us. Your prayers do not go unheard...you have brought us peace tonight. Our faith stays strong!

Love and Blessings,
Rachel/Mama

Monday, January 29, 2007 4:38 PM CST

Tuesday, January 30, 2007 7:41 AM CST
Hello, Maryah here. I'm not going write much but I thought I would write and let everyone know I'm doing alright. All my love. God bless...
Maryah

___________________________
Maryah is out of surgery and resting. We are still waiting for the official results of the biopsy, but Dr. Clohisy and two of his colleagues think the spot is Ewings sarcoma.

Maryah had a small incision on the back of her hip and they were able to remove all of the tumor. The not-so-good news is there are not many treatment options available since she has already had 26 total rounds of chemo and 25 sessions of radiation. We are meeting with her primary doc, Dr. Slomiany, on Thursday to determine what next steps are available. The good news is the spot was small and they removed it.

She still has fight left in her...enough to fight the good fight. When she was coming to and asked if she had cancer again we told her they found something but removed it. Upon hearing the news for the third time now that she had cancer this time she did not cry, she seemed a little annoyed. Tonight I'm sure those feelings will ebb and flow and we will talk and just be with each other while the news soaks in.

We thank God for all of you in Maryah's life. I'll have Maryah write to you when she can. Take care and God bless...
Zach/Dad/Ringman
_______________________________________
We are comfortable in Maryah's room. Our last trip to the U of M in November, for the leg surgery, we toured these COOL new rooms with huge big screen plasma tvs and cool lighting effects. They have EVERYTHING you could want in your own house. Well...Maryah gets to stay the night in one of those rooms tonight.
See, when there is some bad it is always followed by blessings. I have found that each time we have thought things were such a struggle something comes to bring us extreme peace. Tonight it is as simple as this awesome room and Maryah's rest.
Zach mentioned she has fight in her...she definately has fight in her. She will fight anyway she can and we will be beside her fighting too...all of us, Dad, Abbey, Mo, Azaria, Dan, Tori, Libby, me, Nuna and all of us who have walked through this three year journey with Maryah. We are all fighters.
My mom once told me I come from strong, tough women, "tough stock" she called them...Maryah comes from that same "stock". On we fight. Upset that this disease thinks it can get the best of us. But she will fight and be the champ, yet again.

We are at peace, please be at peace also. We will update you with more news after we have a game plan. When Maryah is up to it she will be here to tell you herself just how she will fight and how wrong this disease really is!

All our love is surrounding Maryah tonight and we feel your love surrounding us. Your prayers do not go unheard...you have brought us peace tonight. Our faith stays strong!

Love and Blessings,
Rachel/Mama

Sunday, January 28, 2007 4:42 AM CST

Good Morning...okay...EARLY morning! I seem to be up at 4:00 a.m each day this past week.
I hope that I am awake and in the right frame of mind to type all that I want to say this morning.
Unfortunately I am suffering from a miserable cold on top being tired so forgive me if I don't get out all that I would like is some logical fashion!!!

***************GRAND TOTAL - OVER $12,000******************

The Taco Feed Benefit was AWESOME. There are just not enough words to express how humbling it is to be so blessed by our friends and family. There is generosity that poors out of these folks like you have never witnessed in your life (or at least I haven't). I watched and tried to take it all in last night. There were many that were preparing the hall, setting up, handling food, handling auction items and the auction itself, there were people furiuosly running around helping others, cleaning, filling chips and salsa all night long. I did not go through the night without seeing one of the dear mothers or fathers or friends of Maryah's working their tails off. All in the honor of Maryah and support of our family. I am still in awe.
I wonder how many of these people have their own struggles in life, need support from friends and family, have heart ache and hard decisions yet still run to the chance to help us. I can only hope there will be a day when I can return the favor with as much gusto!!!
I want to thank so many people and God forbid I forget anyone..first thank you to Mr. Pat Loften and all the staff at IHM-St.Luke's for offering the school and all of their hard work and support for the benefit. Of course I bow down to the "grand puba" Ms. Megan Barrett for organizing and suggesting that we do this. Bryan, Meg's dear husband for not only supporting her mission but standing by her side and digging in always! Of course there is no forgetting the parents of Maryah's dear school friends, my dear friends! You are the most amazing group of women and men I have come to know and I can't not imagine how I will ever repay your kindness and love. I thank all of those who donated in any way. Your generosity will help our family to an extent you cannot imagine. It not only helps us financially but it provides a piece of mind when there is no difficult decision about whether we go to work or stay to help Maryah. Lastly but certainly not least my greatest thanks goes to my beautiful daughter Maryah. We knew when you were just a small toddler that you would be a special girl. Somehow Dad and I knew that you were going to impact people, that you would touch hundrends of hearts. In almost 13 years my dear you have done just that and I couldn't be more proud of you. Keep giving of yourself always, it is the most pure form of love you can give all these wonderful people who love you. You are a spirit of joy, kindness, forgiving, love and compassion and those are gifts that you have been blessed with...continue to use those gifts. You will go on touching hearts for years to come! I also want to thank Morgan my other wonderful baby who is so loving and understanding. She is so careful and loves so huge. She especially loves her big sister and is so awesome. I couldn't be more proud of my girls.
I think I have gushed on enough and I may need to attempt a couple more hours of sleep to get over this nasty cold. Tomorrow will be a day of news. I hope to be able to get that news to you as quickly as possible. Please don't fret if it's not there right away as I do not have computer access until I am home. Maryah will have her procedure beginning at 10a.m. Pray for her, pray for the doctors and most of all pray that the cancer is nowhere in her body! There is always hope. Maryah's HOPE!

Love and Blessings,
Rachel/Mama

Friday, January 26, 2007 12:31 AM CST

Friday, January 26, 2007 12:09 AM CST

The biopsy will be on Monday. As Dr. Clohisy promised, he did call me by 12:00 and explained that they will be able to go in using the MRI while they perform the biopsy. Initially, the MRI will guide them directly to the spot, they will remove part of it, biopsy it, and if it comes back positive they will go ahead and remove the whole thing. His assistant will be calling me soon to go over the logistics.

Now we know when it will be which makes it a little easier. Its the not knowing that can be draining. So for now, pray up and rest up. We'll keep you posted.

Reminder: tomorrow (Saturday) is Maryah's fundraiser at St. Lukes 4-8. A group of very generous parents got together and planned this, then informed us they were doing this. Thank you for your continued support of Maryah.

God bless,
Zach

Friday, January 26, 2007 12:09 AM CST

The biopsy will be on Monday. As Dr. Clohisy promised, he did call me by 12:00 and explained that they will be able to go in using the MRI while they perform the biopsy. Initially, the MRI will guide them directly to the spot, they will remove part of it, biopsy it, and if it comes back positive they will go ahead and remove the whole thing. His assistant will be calling me soon to go over the logistics.

Now we know when it will be which makes it a little easier. Its the not knowing that can be draining. So for now, pray up and rest up. We'll keep you posted.

Reminder: tomorrow (Saturday) is Maryah's fundraiser at St. Lukes 4-8. A group of very generous parents got together and planned this, then informed us they were doing this. Thank you for your continued support of Maryah.

God bless,
Zach

Thursday, January 25, 2007 9:34 AM CST

Thanks Rachel for getting the (below) update out.

The most recent update is Dr. Clohisy called and the scans are not at his office yet. Dr. C is the one who will remove whatever this is near her hip so they can do the biopsy and officially determine what "it" is. He needs those scans to determine next steps. Next steps include performing the surgery WHILE Maryah is having an MRI, or having the surgery in a regular operating room.

There is only one of these MRI machines in Minnesota that allows doctors to operate while the patient is in it. Dr. C. would have to block out 3-4 hours for the surgery and this particular MRI is in high demand so we would probably have to wait a while to have the biopsy.

The other option for doing the biopsy is he could do it early next week in a regular operating room. Going in without the MRI would be a difficult task and it would be harder on Maryah based on it's location...but it is doable. The MRI could locate the spot and guide them, but he has to see the scans first. Dr. C assured me that he could and would shift his schedule early next week to get her into the OR if needed. He will call me by noon tomorrow and let me know what he recommends.

Right now we will continue to stay prayed up. Remember, there is always God and God is always good therefore we are always good. I told Maryah that its okay to worry a little but we cannot be scared and I ask each of you to do the same. God is love and grace and we are all made of these two essential ingredients. And so, in these difficult times of uncertainty, when we look deeply within us and around us we can always find God's love and grace. Peace and comfort to all of you. Stay strong
Dad/Maryah's Ringman

____________________________________
Good Morning,

I am just stopping in to update and say "no news". I am sorry. I wish it could be GREAT news but right now I have nothing to share. I know that it is hard on you all as well to wait and not know.
As of last night when Zach got in touch with Dr. Clohisy (finally) he was told that he did not have the scans that were supposed to be couriered to him on Monday. I am actually typing while on hold with Hem/Onc to find out if they did as they were supposed to and send the scans to Dr. Clohisy.
I figure if they have not all done thier jobs behind the scenes I will be showing up front and center to carry those scans to the U of M myself. It's unfortunate sometimes when the docs don't realize how hard it is to wait and they take their time. Sometimes I realize it is out of their control but there are times when they could at least call and give us some update.
It sounds like Hem/Onc sent the scans like they were supposed to so now Zach is working on getting ahold of Dr. Clohisy to see if he found them.
Here's where I am at this week. This is in God's hands and it will happen in HIS time not mine. I am pushing gently when I think it is appropriate but we also have a big celebration to be ready for in a couple days and we are trying to concentrate on that!
Love you and thank you all for supporting and encouraging us. We will have answers as soon as we are supposed to and you will all know as soon as we do.

Love and Blessings,
Rachel/Mama
___________________________

Hello!

How is everyone?? I just wanted to let you know that I just got off the phone with my dad and he said that D.C. will call tomorrow. At the latest 12:30. I hope you all have a great night! Stay prayed up! God Bless.
~Maryah

Monday, January 22, 2007 5:51 PM CST

Good Evening,

Today brought no new news regarding what is in Maryah's leg. I did talk to Dr. Slomainy this afternoon. He called to say that he will courier over the MRI films and report to Dr. Clohisy at the U of M. Dr. Clohisy will look them over and find time when he can perform the biopsy. They will remove the entire "something" that is showing up. What Dr. Slomiany could tell me is it is perfectly round. It hasn't affected the soft tissue and there is no bone erosion. He agrees that we are just about 9 months out as we were last time with the recurrence and feels just as uncertain about what this is as we do. He simply does not have the answers I desperately need to hear "It's nothing to worry about", "I am sure it will be fine". Our conversation was a short one and brought nothing that was of any real help in figuring out what is going on. He is getting us on the path for answers however and for that I am grateful.
Today brought a lovely funeral for my uncle Roger. It was a peaceful goodbye and was a celebration much like he would have appreciated...short and sweet and on to the food. That was Roger! He will be greatly missed by many.
Although I don't have any real news yet I wanted to at least get an update out on what we do know. It eats at me to wait and I am sure it eats at all of you too so I will do my best to be diligent about updating each day.
Thank you for praying and supporting us. We are looking forward to seeing many of you on Saturday at the Taco Feed at IHM-St.Luke's. It will be a celebration no matter what we hear this week!

Love and Blessings,
Rachel/Mama

Saturday, January 20, 2007 8:02 AM CST

Good Morning,

It is hard to come back to the site today and report news that isn't much news at all. The MRI did in fact show that there is a very small "something" in Maryah's illiac (sp?) bone, or rather in the marrow. It was late last evening that Dr. Chue was kind enough to get in touch with me so we didn't have to wait any longer. She told us that since all the docs were gone they would huddle on Monday and determine where, when and how to go about getting a tissue sample to find out what this "something" is. She did say that it is possible it could be Ewings. I hate to speak those words again but this is always a very real possibility in our lives.
Maryah is very scared as are the rest of us. We agree however that it is all in the Lord's hands and we try to find peace and understanding with the fact that His plan is not always what we think is best but it IS the best. I don't know what this will bring and I will continue to pray that they do the biopsy and it is NOTHING at all but some stupid scare.
I read a caringbridge friend's site not long ago, just before Christmas while they were going through a scare and I cried and cried when I read Mom's entry. I remember how awful my heart broke for them because of how scary this all can be day-to-day. I then remembered that all I can do is pray. Her scans were CLEAR and she is well. There is ALWAYS hope and we do have that.
Maryah is strong and so are the rest of us. Be strong with us and PRAY like crazy. I will keep you updated. For those of you who have called please understand that I am not avoiding you I just don't feel I can talk about this much right now. I am coping by spending my time with Maryah and as my dear friend once told me I am "letting my girls fill my heart".
Have a blessed weekend and know we will be having fun with family and playing with cousin Shayna as she celebrates her big 6th birthday!!!
Thank you...for EVERYTHING!

Love and Blessings,
Rachel/Mama

Wednesday, January 17, 2007 6:30 PM CST

Good Evening,

I wanted to get an update out. I have been a little quiet since Maryah's CT scan. There was a small nodule on her lung in the CT. We followed up yesterday with a PET/CT fusion. This showed the nodule was nothing the docs are worried about. However there is a small area in the bone where the leg and hip come together. This spot seems to be in the marrow. They are unsure what it is an have recommended an MRI to further look into it. Maryah will have the MRI on Friday late in the afternoon.
Although I am trying not to worry it is always scary to play this waiting game. I know it makes Maryah very scared as well.
We are in a spot where we are at the Lord's mercy and will be praying hard that this is truly "nothing to worry about". I'm not sure if we will have results on Friday to speak of but by Monday I will have a better idea.
I am asking for your concentrated prayers for Maryah. We all need prayers for peace, comfort and complete health.
Regardless of all that is going on we are looking forward to seeing everyone next Saturday 1/27 at the Taco Feed at IHM-St.Luke's (if you need info go back a couple journal entries).
Once again I thank you for your support and your prayers. They are priceless. We appreciate all you do for us.

Love and Blessings,
Rachel/Mama

P.S. I have another prayer request. My Uncle Roger Emerson passed away early this morning. He suffered a massive stroke this past weekend and had long ago requested never to be put on life support. His wishes were respected and he held strong for a couple days before peacefully passing in the early morning hours. We will miss him dearly and are holding his family in our prayers. He was very special to Miss M. and our family.

Sunday, January 14, 2007 9:55 PM CST

Hey everyone!

I am so sorry I haven't written in so long. It has been so crazy with a new baby sister and school, it's just nuts. Anyway, how is everyone?? I have been doing great! I am feeling well, I'm not in ANY pain and I have been able to get around much better than I used to. In school right now we are doing a huge project in science so I have been really busy doing that. It is pretty much my main focus right now. Well, I am sorry to make it short but it is my last night with my dad for the week so I am going to go and spend some time with him. I hope you all have a great rest of the weekend! All my love. God Bless.
Maryah

PS. I would like to ask you all to say an extra prayer for my great uncle. He suffered a stroke and is not doing very well right now so if you could please keep him in your prayers I know my family would greatly appreciate it. Thank you!

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