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February
16
2010

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Happy Valentines Day!

Thank you to all of you who have contacted us over the last couple of months.  We VERY much appreciate all of your continued love and support!!

Next month Uncle "Meatloaf" (Brett) is participating in an event to raise money for Pediatric Cancer Research / Treatment.  Please visit this
link to read more about the event and to participate.

Moops would be VERY proud of you Uncle Meatloaf!

January
28
2010

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Happy Birthday to you…

Happy Birthday to you…

Happy Birthday dear Morgan…

Happy Birthday to you!!!!!

Today our Morgan Angel turns 9!

It has been a year! It feels like it was just yesterday and at the same time it feels as though it has been years and years…

Morgan we miss you VERY much and think about you every single day.  Today we decorated Morgan’s grave with balloons and flowers and all kinds of fun to celebrate this very exciting day 9 years ago.

We also released 9 VERY large balloons up toward heaven for Moops.  Tied to each balloon was a “cut-out” of a character (Doggie / Kitty / Butterfly / Etc.) and a note that tells whoever finds it, about Morgan and asks them to let us know who they are by signing Morgan’s guestbook.  The note also asks whoever finds it to re-attach it to another balloon and send it back toward heaven.  We hope the notes stay aloft forever and find many, many people.

We have uploaded Pictures of the day at this link

We want to tell all of you again how much we have appreciated your love and support.  We continue to feel that even now, a year later.  Morgan received her angel wings, and left us to begin her next journey one year ago last week, one week before she turned 8, and today she turns 9.  This week will forever be marked by the incredible pain of losing her and the indescribable joy of having her arrive into our lives.

Morgan, we miss you and LOVE you!!

Happy Birthday Morgie Mo’s / Moops / Moopers / Nic-Nac / Sunshine / Baby Doll / Tiny Dancer / Snow Puff / “Dogs” / Buster Butt / Baby Bunny / And on… And on…

March
16
2009

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Tomorrow marks eight weeks without our little girl. I am trying very hard not to count the Weeks / Days / Hours since she left, but I have not found any success so far. The time has been “strange,” filled with bareness and pain, but also with memories of happiness and a strange “peace.” We go to visit with her often and are trying to learn to be a family of three.

IT IS HARD!

Thank you once again to all of you. You have kept Morgan in your thoughts, you have talked with us, you have cried with us, you have lived with us and you continue to support all of us. We appreciate it more than we can say. Thank You!

We had a perfect service for Morgan and many of you have told us of your feelings from that experience. It was truly something that Morgan participated in and you could feel her there. We have had many inquiries about the thoughts we expressed and have decided to post them here. After thinking about this decision, it feels like a correct one. You will find the Service Program and words from me along with my wife, Lisa, and Morgan’s big sister, Alexis.

I have also been able to post pictures and video from the last part of December and January. It has not been easy to do and has taken some time, but again… After thinking about this decision a lot, it feels right. You have all participated in the past year, and these are part of that experience.

I miss her terribly and find her everywhere… In my car, at my office, on the couch, in my bed, in Alexis’s face and in my arms. A very smart father and friend of mine with the same experience had some profound words for me at Morgan’s viewing after being without his little girl for most of the past year. He told me… “We miss them more than we can say and more than anyone else can ever understand. But, they have been healed and you and I get to remember them.”

He is right!

I love you Moops.

SERVICE PROGRAM

  • Family Prayer - Ron Palmer (Grandfather)
  • Prelude / Postlude - Callie Saltmarsh
  • Conducting and Obituary - Bishop Bob Lewis
  • Invocation - Jay Soelberg (Grandfather)
  • Opening Remarks – Bishop Bob Lewis
  • Musical Number –
    "A Tribute"
    Performed by Brett Palmer (Uncle)
    Accompanied by Callie Saltmarsh
  • Speaker - Lisa Palmer (Mother)
  • Speaker – Alexis Palmer (Sister)
  • Musical Number –
    "I Am A Child Of God"
    1st Verse Performed by the Highland 12th Ward Primary / 2nd and 3rd Verse Joined by the Congregation
    Accompanied by Callie Saltmarsh
  • Speaker – Brandon Palmer (Father)
    Musical Number –
    The River
    Performed by Joshua Creek
  • Closing Remarks – Bishop Bob Lewis
  • Benediction – Janice Palmer (Grandmother)
  • Dedication of Grave – Alan Bauer (Great Grandfather)

Casket Bearers

  • Brandon Palmer (Father)
  • Ron Palmer (Grandfather)
  • Tim Fullmer (Grandfather)
  • Brett Palmer (Uncle)
  • Brady Palmer (Uncle)
  • Cameron Soelberg (Uncle)
  • Vince Mendez (Uncle)
  • Phillip Barnette (Oncologist)

Honorary Casket Bearers

  • Jay Soelberg (Grandfather)
  • James Soelberg (Uncle)
  • Devin Soelberg (Uncle)
  • Matt Fullmer (Uncle)

LISA

Some of you may believe that Morgan has been dealt a terrible hand in life and that she had to spend a seemingly endless year of pain and suffering for a little girl who deserved so much better. But the real tragedy would be to look at Morgan’s life and to not understand her purpose.

Morgan came into this world for many reasons and to help many people. Morgan has given me the gift of not only knowing her but knowing what my life is all about. The lessons were disguised throughout the year of despair and pain but they were speaking volumes each and every day.

Morgan had an unselfish gift of the spirit to bring love and joy into my life and anyone who knew her. The lessons were about love without conditions and hope in the midst of despair, and courage in the middle of a storm and to have faith and courage no matter what our trials may be. I would have never learned any of these lessons if it weren’t for her as my mentor. Morgan’s lessons have shown no boundaries. Many people have been touched by Morgan even people who have never met Morgan, have shared in her pain with us and grieved with us.

My purpose I have found is to live and respond to the trial set before me; to learn to serve not to lead; to learn to give and to learn to find pure joy in giving; to learn to share my feelings with those around me; to accept support from family and friends and to find no shame in not being able to stand alone; to be a witness for hope and to forgive the lord for what seems to be an unjust punishment.

Morgan showed remarkable courage throughout the past year and Morgan’s courage was recorded through beads of courage that she received while in clinic. Morgan earned 192 beads of courage over the past 12 months. Her unique collection of beads represents her journey through her cancer.

Morgan Earned These Beads:

  • 13 for Chemotherapy = WHITE
  • 4 for PORT / PICC Line Insertion & Removal = ORANGE
  • 30 for Clinic Visit = BLUE
  • 22 for Emergency/Ambulance = GOLD
  • 1 for Hair Loss/Thinning = BROWN
  • 6 for Morphine/Dopamine/PCA Infusions = PURPLE
  • 30 for IV Starts / Blood Draws = BLACK
  • 17 for Radiation Treatments = GLOW IN THE DARK
  • 14 for MRI / = LIGHT GREEN
  • 1 for Tube Insertions (Catheter, Chest, NG, Foley) = AQUA
  • 21 for Sleep Over at Hospital / Patient Admission = MAGIC BEAD
  • 2 for Surgery = SILVER
  • 3 for Stay in the PICU = SQUARE HEART
  • 15 for accomplishing a new goal such as walking / running / throwing a ball. = SPECIAL

So in the end there are no wasted lives just many unlearned lessons. I am grateful that I have identified one of the precious spirits that is guiding my life and now I will spend the rest of my life striving to live the example that Morgan has set for me. To find strength I will not only look to Morgan but to Brandon and Alexis and all of you. I ask you to not be bitter about Morgan’s life. Find joy in it! Think of the gift we all have received in knowing her and loving her. She was an incredibly special person with a deep and ancient soul.

One day when I grow up, I want to be just like her.

ALEXIS

These are some poems that I found in my favorite poetry book that remind me of Morgan and how I feel…

WE’RE OUT OF PAINT, SO…

Let’s paint a picture with our food.

For red we’ll squeeze these cherries.

For purple let’s splash grape juice on.

For blue we’ll use blueberries.

For black just use some licorice.

For brown pour on some gravy.

For yellow you can dip your brush

In the egg yolk you just gave me.

We’ll sign our names in applesauce

And title it “Our Luncheon,”

And hang it up for everyone

To stop… and see… and munch on.

THE VOICE

There is a voice inside of you

That whispers all day long,

“I feel that this is right for me,

I know that this is wrong.”

No teacher, preacher, parent, friend

Or wise man can decide

What’s right for you – just listen to

The voice that speaks inside.

I LOVE YOU SISSY!

BRANDON

Friends:

Close your eyes with me for a moment and think about your favorite memory of Morgan… If you don’t have memories of Morgan, think about your favorite picture or video of Morgan. Let that put a smile on your face and let those smiles help me to tell you what I would like you to hear from me today.

Thank you to all of you for everything this past year. I will never be able to express my appreciation completely to you for all that has been done for Morgan and my family.

I have been very blessed to have been Morgan’s “Daddy”. I am very grateful that she chose me and spent what time she could teaching me what she has. I already miss her a great deal!

Today is my little sister’s birthday. Tomorrow is my wife, Lisa’s birthday. Tuesday will be Morgan’s 8th birthday.

One year ago today at about this same time we desperately awaited a consultation with a doctor hoping for what we knew would not come. We were given one of the world’s great doctors, whom we would quickly get to know and trust and would take Morgan into his heart.

One year ago today several hours from now… We would understand that Morgan had been diagnosed with an inoperable and terminal Brain Stem Tumor.

Several days shy of 8 years ago we anxiously awaited the arrival of a new little girl, who was intent on taking “her own sweet time” in arriving. Roughly a week over due and many hours into the inducement process, scary news that the doctor finds the “cord” wrapped around Morgan’s neck… There is great concern for several brief moments that last for days and then a baby girl appeared several shades of purple. There is no sound for several moments while frantic work is taking place, and then the wonderful sounds of baby cries and Morgan Nicole Palmer was born.

Morgan is a wonderful baby, she eats a great deal, she sleeps through the entire night right from the start and she awakes in the morning pleasant and all smiles. She grows quickly and VERY healthy. She is rarely sick and never complains about anything. She spends late nights up with daddy, watching movies, after mommy and sissy have long been asleep. She is a natural snuggler and falls asleep often holding onto daddy’s ear while daddy holds her close with her head on his shoulder.

One year ago, just after her 7th birthday, and only days following her diagnosis, while enjoying a quiet evening at home Morgan winces in pain. Mommy rushes to her side and Morgan begins to scream “my head hurts.” We move quickly to provide her relief with narcotics, but they serve only to help her sleep restlessly. Morgan is hospitalized and we learn that in just the span of several days Morgan’s tumor has already grown an incredible amount. Her medical team is very concerned. We wrestle with decisions and potential consequences between standard and very aggressive treatment. After deciding to go after the tumor with all that we can and several very scary weeks in the hospital, where Morgan comes right to deaths door, Morgan gets to come home.

7 years ago, Morgan moves with her family to Texas, where she will do most of her growing up. She is a terror as a crawler and wobbly as a toddler, but she gets the hang of things. She loves to ask daddy to get “fries” at 10 pm and to ask daddy to “swing” in the back yard at midnight. She always remembers to say “pees.”

She grows quickly and is soon running and playing and doing crafts and learning to dance. She loves her best friend sissy (Alexis) and they do everything together. Morgan speaks with a distinct accent (Boston “r” mixed with South Bronx) that anyone who knows her loves very much.

9 months ago, we learn that our aggressive approach has worked with the tumor and we discuss standard chemo-therapy care and are not impressed. We discuss a new semi-experimental chemo-therapy cocktail treatment and decide that is for us. This treatment produces immediate and profound results. Morgan begins to re-cover over the next month and in April we take the family to Disneyland and have a great time. Upon our return and after further treatments, Morgan looks back on pictures from Disneyland and realizes that she did not go on many of the rides.

After discussing with Morgan that at the time she was still not strong enough and was too confined to her wheelchair to go on many of the rides Morgan asks me a defining question… “If I get stronger and start walking again, can we go back so I can ride these other rides?”

Morgan works very, VERY hard and has a determination that cannot be described! We do lots of family vacations to southern Utah and Heber and we go camping and 4-wheeling every chance we get. In June, according to our deal and in reward for all Morgan’s hard work and determination, we go back to Disneyland where Morgan rides EVERYTHING!

The rest of the summer is filled with continuing improvement, visits to my office where the girls both decorate all the whiteboards and glass office doors and windows with dry erase creations. My office mates enjoy and welcome and even participate in each visit. We camp more and 4-wheel more and have weekenders with grandparents. We take a trip to Sea World. We go to plays and musicals, which Morgan has a special love for. We go to lots of Bees AAA Baseball games and see lots of fireworks.

Morgan loves to tease with daddy at each baseball game by cheering for the other team and by walking up and down the aisle yelling Boo Bees. Daddy tries to get her not to yell this and mommy says, “But she is so cute.” Daddy agrees, but points out to mommy that it might be best if our youngest daughter didn’t yell “Boobies.”

Through all of these activities and each of these months, Morgan goes to Primary Children’s every other Monday for a treatment that lasts all day and wipes her out. She is strong and brave and each member of her medical team loves her.

4 years ago, Morgan has grown up a lot and is continuing to dance and learn new things. She still loves her best friend sissy more than anything and is a very opinionated youngster often telling Mommy “NO, I don’t Want too!” Daddy will look over at her and with all his love ask “What did you say to mommy?” Morgan will reluctantly smile and agree to do as she is asked. Often she pouts by running to the stairs and climbing two stairs up she sits down firmly on the third stair, folds her arms, puts on her best pouty face and says “Humfffff!”

She always emerges several minutes later with a hug and kiss.

Occasionally she gets hurt as little kids will and she demonstrates her extreme independence early by saying “I don’t want you…!” to anyone offering help and running off to some corner. Quickly she emerges and wants hugs and kisses and is back on her way. She always gets back up and she always tries again.

4 months ago, things stop improving and we begin to see signs of returned tumor growth. Our experimental cocktail is no longer working. We quickly discuss other options. All of the good options are gone. We decided to participate in a Clinical Trial in Denver, Colorado. Once a week for the next eight weeks we fly to Denver, spend several hours in treatment and either stay overnight, or fly home. Each trip is exhausting for Morgan, but she recovers quickly and continues to go to school where she loves her teacher and her friends. School invigorates her and she loves to learn and she continues to be a great student.

We continue to watch Morgan deteriorate. It is very slow and the changes are very small, but they are there and we understand too well what each one means.

2 years ago, Morgan moves back to Utah just before Christmas and is close to grandparents, aunts, uncles, cousins and family again. Uncle Brady returns home from his LDS Mission to Africa shortly after followed by Christmas with family and loads of fun and good times. In January, 2007, following her return to Utah Morgan is hospitalized at Primary Children’s for several days with a mysterious immune disease called HS Purpura. She is very sick and mommy and daddy are very scared for her.

She recovers quickly and returns to her normal routines, school, crafts, singing and dancing. She still loves her best friend sissy more than anything and they do everything together. We play a lot in the snow and Morgan loves being pulled around the backyard with the 4-wheeler in the snow. Summertime comes and we do lots of camping and go 4-wheeling every time we can. During one 4-wheeling trip Morgan and Mommy have a terrible accident and roll their 4-wheeler down a hill. Morgan falls off the back of the 4-wheeler as it begins to roll and each of the many times the huge 4-wheeler rolls it misses Morgan by inches and she walks away from the accident with two or three scratches. Mommy breaks her forearm and is nearly killed.

A little over one month ago, we finish treatments in Denver and a follow up MRI shows us that the Clinical trial has not helped the tumor, it is growing again. Morgan continues to go to school and show courage I have never seen before. She loves her life and her family more than words can describe.

Several days ago, Morgan took her last breath and left her struggle behind…

Morgan has taught me not to waste any of the time we have while we are here. She has taught me more about love, courage, and determination than I have ever known. She has taught me about making this journey through our lives all it can be.

There is a song you will hear in just a moment that was very special to Morgan. We would listen to it everywhere we went. On camping and 4-wheeling trips, to and from treatment and even on our way, as fast as daddy has thought appropriate and safe, to the Primary Children’s Emergency Room. Morgan knew it by heart and took great comfort from it during many of her hard times. It has become the theme of my life.

I invite you to listen to this talented group perform it and ask you to listen carefully to what is has to teach each of us.

I miss you Morgie Moops!! Don’t ever forget how much Daddy loves you!!!

January
22
2009

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Morgan Nicole Palmer of Highland, Utah, passed away into the arms of her Heavenly Father on Tuesday, January 20, 2009, at 12:38 PM.  Seven days prior to her 8th birthday and four days prior to the one year mark since her diagnosis with a Brain Stem Tumor.

 

Morgan passed away peacefully, in her Mother’s arms while surrounded by family.She is now free from her bonds and will be running, playing and riding a 4-wheeler screaming FASTER!!

 

We will all miss her a great deal! We love you Moops!!

 

Morgan was born on January 27, 2001, at 12:09 AM at the American Fork Hospital to her father, R. Brandon Palmer, her mother, Lisa-Marie Soelberg Palmer, and her big sister, Alexis Marie Palmer.Morgan was in the middle of her 2nd grade year at the Legacy Elementary School.Where she loved to attend school, was an excellent student, and had many, many friends.Morgan was an accomplished dancer and was beginning to learn the Piano.Morgan loved the outdoors in all forms, but enjoyed 4-Wheeling and hiking most of all.

 

Morgan is survived by her parents, Brandon and Lisa and by her big sister Alexis and her two dogs Maddie and Rowdy.Morgan is also survived by her very large extended family.Grandparents, Ron and Janice Palmer, Tim and Janis Fullmer, Jay and Debbie Soelberg.Uncles and Aunts, Brett, Brielle and Brady Palmer, Cameron and Melanie Soelberg, Vince and Lindsey Mendez, Matt Fullmer, Jared and Amanda Mason, Josh and Emily Mason, Lacey Mason, James and Devin Soelberg.As well as many other extended relatives.

 

A viewing will be held on Friday, January 23, 2009, from 6 – 8 PM at the Warenski Funeral Home located at 1776 North 900 East American Fork, Utah 84003.

 

Funeral Services will be held on Saturday, January 24, 2009 at 2 PM, in the Alpine Tabernacle located on the corner of 100 East and Main (US-89) in American Fork, Utah 84003.

 

The “Morgan Nicole Palmer Fund” at any Bank of American Fork branch will continue to accept donations made in her name.

January
20
2009

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Morgan Nicole Palmer passed away into the arms of her Heavenly Father this afternoon at 12:38 PM Mountain Time. 7 days prior to her 8th birthday and 4 days prior to the one year mark since her diagnosis.

She was in the arms of her Mother and Big Sister and was surrounded by her family.

Morgan passed away peacefully and without issue after facing a year long battle with this terrible tumor. She is now free from those bonds and is, I am sure, right now running, jumping and riding a 4-wheeler screaming FASTER!!!!

We will all miss her a GREAT DEAL! We love you Moops!!

January
18
2009

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December Pics and some of January Pics are uploaded. There are lots of fun ones to look at. Click here and then click on an album cover to see the individual Pics.

I hope to get some video up soon, those take a little longer...

The past two days have continued to be hard and amazing all at once. Morgan appears to be declining pretty quickly. It is VERY hard!

Still not in much pain, so we will take what we have over what could be right now.

Morgan's right eye has quit working all together and we watch that close to keep it moist. More trouble holding still / being able to get comfortable all of the time now, not just at night.

Breathing is continuing to change. Getting shorter and harder to draw.

More medication, mostly to help Morgan rest or sleep. Doses are getting higher and we are now considering constant morphine.

Morgan keeps smiling and has very pleasant messages, when she speaks, which has dramatically decreased.

My wife and I take turns with her at night. We assume we are closer than further from the close of this chapter.

January
16
2009

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How do you prepare to say goodbye to your child? How do you face the future with the knowledge that your child will not be a part of it? What do you say to your surviving child? What should the remaining time you have together be spent doing?

These are the terrible questions that we have faced over the past year, but in particular over the past 24 hours…

Morgan will turn eight this month on the 27th. Earlier this week she decided to have a birthday party with some of her friends. Lots of pizza, presents, games and a movie. They had a great time and Morgan enjoyed it very much.

This past week has also brought with it some significant changes. The trouble we have at night has increased and started to present during the earlier evening and afternoon hours. Morgan has become much more tired and wants to rest more often. Most significantly though her right eye has stopped working normally and she is losing some more muscle control.

These are some of the signs that we have dreaded, but have kept a watchful eye for. We went to PCMC yesterday to see our Oncologist and have an MRI done. Fearing and expecting the worse, but keeping hope for the best. Morgan was her outstanding self as she went through PORT access, MRI and other procedures. Every one of the MRI technicians we have seen over the past year came out to visit with Lisa and I as we waited. Each one of them telling us how much they care for Morgan and asking how things have been.

More waiting for the images to come back and for the doc to be available… We left Morgan resting with a nurse who was reading her a story and went with the doc to an adjacent room to review the images.

The differences between this scan and the one six weeks ago was immediately apparent! The tumor masses are very large having grown 60% or more. The images are VERY bright with “uptake” indicating large amounts of blood flow to each tumor mass. Brain ventricles show hydrocephalus (swelling and fluid accumulation). Each tumor mass shows large areas of necroses (dying tissue). This means the tumor is growing so rapidly that it has overgrown it's own blood supply moving so fast that is can not keep up with itself. It is the most heart breaking thing I have ever seen.

Morgan has little pain and that is currently controlled well with oral medication. As long as that remains the case there is no need for surgical intervention. There is also nothing left to do, but wait…

We cried along with our GREAT oncologist who told us of his love for Morgan and for the miraculous example she has provided to others. We talked about time frames and discussed things to still be watchful for, took some pictures and headed for home. Since then Morgan has “stepped down” again, having some issues on the way home. It is hard to explain, but she is not “there” at moments. As Lisa held her in the back seat driving home, Morgan said to my wife… “I don’t want to lay on the couch anymore, take me to bed.” Sitting on the couch not 15 minutes ago, she told us “I want to go home…”

We are left in a place that I am not sure I can describe…

January
8
2009

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It has been a long time…

We have another new theme for the New Year and the new season. And there are many things to tell you about that I have forgotten in recent postings. You will have to forgive the length of this one…

Early in December tons of neighbors and friends descended on our home to decorate the HUGE Evergreen we have in the front yard. Ladders, lights, homemade decorations, signs, and lots of love and support. They brought with them goodies and hot chocolate and even a visit from Santa. We loved it, even though it was a very cold evening. Both Morgan and Alexis had a great time with their friends and seeing Santa. The tree, dubbed “Morgan’s Tree” with a huge sign in the front yard has been great. It is always there and brightly lit reminding us how many people care about our family and continue to have Morgan on their minds.

We have also had a Secret Santa delivering presents, goodies, and all kinds of delight for the “12 Days of Christmas.” The girls have thoroughly enjoyed waiting for the doorbell on each of those nights waiting to see what surprise happens next. Several groups of carolers have also graced our home with love and compassion sharing the holiday spirit with us.

Each grade at the Elementary participated in a holiday performance by singing several songs to a very full auditorium of parents, families, and loved ones. What a great experience to see both Morgan and Alexis take part.

The holiday season has been a wonderful time and we have felt very blessed to have had this Christmas. While at the same time, it has been a difficult time as things have begun to change. We are finished with treatments in Denver since the December MRI shows us that the Tumor is growing again. We have discussed at length all the other options that we might pursue.

It is VERY hard to express how this process feels. What do you do? How do you find a “right” decision? What is a “right” decision? I have wrestled with my soul for answers and direction. Lisa and I have spent hours and hours discussing what might be right for Morgan and where we should go. We have such a GREAT Oncologist who has been there to help us.

There is NO CURE! We have exhausted all the good options! Lisa and I have come to what has been the hardest decision of my life… We are done with treatment of Morgan’s tumor. The goal now is enjoying time and maximizing comfort.

It is hard to say what this feels like and trying to find a way to express it is part of the long delay for this update. The balance between what you want as her parents and what is best for her is one only those of you who have been through it understand. A decision like this carries the utter despair associated with giving up at the same time bringing the comfort that comes from doing all you can with what you can.

I have said before that, at least for me, I have only been able to find comfort facing these challenges knowing that I cannot change what it is. I can only affect how I am going to approach it. I am very grateful for this past year. I am very grateful that I have been blessed to be the father of both my girls.

So… Morgan is finished with treatments and we have gotten off all of the Steroids and gotten past the withdrawal phase that comes with that. We have enjoyed the Christmas season with all the family we can get our hands on. Morgan has loved all of it!

Right around Christmas Eve brought the first of the scary changes. Morgan has continued to lose mobility on her left side. Starting with her Left Arm and Hand, which she is not able to use anymore, continuing to affect her left leg and her ability to walk. However, new changes have appeared at night between 10 pm and 2 am.

Morgan will wake up with a varying degree of restlessness, confusion, sometimes pain… Lisa will be lying in bed with her and she will say “I want Mommy!” I will be holding her hand and rubbing my fingers through her hair and she will look right at me and say “I want Daddy.” She will ask to be rolled onto her back and I will smile and say “You are on your back Morgie.” She wants to roll from her side to her back to her side to her back almost instantly. Sometimes her restlessness is so great that she does not know what would make her comfortable. Sometimes her head hurts and big tears roll down her cheeks.

And while this happens to different degrees at different times at night, Morgan is very much herself during the day. Mornings are best followed by afternoons followed by evenings. Morgan is very bright and interactive. She wants to play everything, so we do lots of board games, especially flavors of Monopoly and Wii. We do lots of cooking. We do lots of crafts.

Morgan has started back to school with the rest of her friends following the break and she loves to go there each day.

We have also been able to visit with a very special family who lost a daughter to this Tumor last year. Lisa and I have communicated with them through each of our daughter’s websites, email, and phone calls for some time. I have been putting the visit off for a long time not knowing how that would affect me and my family. However, I am very thankful for the persistence and patience they have shown in allowing the time needed.

Emily, Paul and Alice, you are very special to us and I appreciate all that you have done to help me. Alexis and Morgan enjoyed visiting with Alice very much. I am glad that you and I were able to work out a visit.

Thank you again to all of you who continue to think about us and keep Morgan in your thoughts. We hope to have Pics and Video up soon.