Hello,

Another week has passed and we got through it relatively OK. Ryan went back to school and seemed to be able to hold everything together a bit better. He went to school for an 1/2 day on Monday and that seemed to work as a good transition. A friend gave him a stone to rub when he got nervous/anxious and that also seemed to do the trick. The stone is very special for it is engraved and he won't show anyone (not even me)! I am not going to argue.

We started planning Morgan's service for the 5th. So many ideas, so many things to consider. I think it will be fine. There are so many things I just don't seem to know anymore.....so I just need to trust that it will, somehow, turn out to be the way it should be. This approach has carried me so far...right? I still find it all soooo unreal that 2 weeks have passed. Two weeks without Morgan's physical presence. There are plenty of times where I feel I can "talk" out loud to her and carry on, but other times, I need to take a HUGE breath and remember that she is safe....at peace...but not in our realm of existence. The acknowledgement of the later is creeping up on me. I may need to disappear for a week or so, just to get away....not runaway...but slow things down so I can process everything that has happened in the last 5 months or so. We'll see.

I hear that things are settling down at her old school - hearts are sad, but by remembering the good times and sharing the memories, life is getting a little more "back on track". I hope the sense of community that seemed to develop through all this is still flourishing. I would hate to see that gift disappear. One of her school mates came over to the house today. It was great seeing her and she got to visit with Izzy. We got the chance to chat, exchange a few stories and re-connect a little bit. I know Izzy was glad to see her. And, yes....I heard the class' request that you all would like to see Izzy at the service on the 5th. She'll be there!

I tell ya', THANK GOD (and Kim) for Izzy B.!! She is such a reflection of Morgan...demonstrating the meaning of friendship, joy, love, acceptance as well as un-acceptance when the situation warrants. The MORE chew bones, hugs, walks...the BETTER. Izzy seems to want to run and play with the girls when she sees them, no doubt that she misses the younger feminine touch. She wants to cuddle also. I, of course, am providing plenty of cuddle time...it is sooo good for both of us! Ryan got a note from a friend of ours saying how she chatted with her father's cat and they seemed to share memories after her father passed on. That struck a cord with Ryan, for I find him huddled up with her whispering "things". I ask what's going on...and I get this shy smile. That is all I need to know.

That is about it in a nutshell. Last night we went out to dinner and Karl was joking around talking about what an expensive third wheel Ryan was (he ordered fried oysters, salmon, and a couple of sodas). On Ryan's cognitive level, he interpreted that comment differently and piped in that he needed to be because we have lost our 4th wheel. It was good to see him open and willing to talk about it while not being cynical, depressed or angry - but the truth behind his statement broke my heart (yet again). Time will heal. Talking and writing is good. She certainly will not ever be forgotten.

Thank you all for your cards, prayers, support and positive energies. There are many-a-day where I question how we are managing the way we are. I don't have to wonder too long for I know you all are carrying us right now. Please continue....for a tad longer anyway.

Take care and God Bless,
~Lisa

Hi All,

Tonight, I do not know where to begin.

This whole cancer/treatment/life/death path has been quite a journey. Right now, we are in a place of quietness and uncertainty versus the busyness and purpose that the past couple of days/months required. Thank you to those who were able to participate in the service on Tuesday...your support was wonderful. Those who gave a part of themselves through stories, pictures, flowers, song and music....you were AWESOME. We left the general layout of the service to Sarah, the pastor, and I don't think she could have done a better job in expressing the essence of Morgan. THANK YOU.

Now that the dust has settled a little, we find ourselves trying to define a new way of life. When Morgan was first diagnosed, I remember telling someone that I felt like I belonged to two worlds (home and medical)- not being a solid member of either, but having to participate (or pretend to) like I did belong. Somewhere along the way, the two worlds became one and life seemed less confusing - more integrated. Now, we are back to redefining what our world will consist of...questioning if we will ever be comfortable with it. This adjustment seems huge because it requires less interaction with our medical family and the acceptance that Morgan's physical presence is no longer with us.

The loss of Morgan is ENORMOUS. I feel the emptiness around every corner. I could conjure up tons of examples but a few are: taking a nap and being not as snug for I do not have Morgan's head resting on my shoulder; I also find myself looking up at the clock around mid afternoon, wondering if I should race to school to get Ryan or go get Morgan. Many times, I have had the feeling that I need to be doing something particular, at a particular time...only to realize that it was the time for another "shot glass" of medications...medications that are no longer necessary. It is the little things like this that are getting to me in a big way.

Tonight, Karl, Ryan and I went to the movies after a quick dinner. How strange it seemed. I really didn't want to go, but I did because I know that we need to re-establish/establish a new road map to guide us along in the right direction. This seemed like a logical, easy step. But when we got into the movies, and the movie started, I felt myself tense up because I knew the volume would be too loud for Morgan. Did I bring the ear plugs? They were probably in my purse, but did it matter anymore? No. I suppose, like in the early days of diagnosis and treatment, that we will very likely establish a new rhythm that we all feel comfortable with...but for right now, I am finding that to be easier said than done.

Ryan is probably struggling the most right now. Leave it to Morgan and the cosmos to bring about a decent ice storm the day before her funeral service, causing school to be canceled on the day of her service. With the 4 days of no school, I THOUGHT that it would be a good idea for Ryan to get right back onto his horse and attend school the day after. Man, was I wrong. I ended up picking him up early on Wednesday and will keep him out until Monday (I think). He too, is also trying to define his place in this new journey of ours. I have every confidence that he will succeed, he just needs time. We all need time.

Sooo, thank you everybody for your support, kindnesses and prayers. I'm sure that along with these good energies, with Morgan's wonderful example on how one should live life, as well as knowing that we all have a new guardian angel looking over us...I'm sure we'll find the right path. After all...Morgan sooooo knew what she wanted. I just cannot envision her wanting us to be forever sad and lost. Rather, with her and God's help, we'll find our new place - living life the way it is meant to be....hopefully with a bit more wisdom and love.

Next week, I think we'll start preparing for Morgan's community "Celebration of Life" service on February 5th...the day of her birth. If the spirit dictates, please feel free to join in, whether you made Tuesday's service or not.

Take care and God Bless,
~Lisa

Mood:  lucky

Hi,

I am finding that I am pretty numb right now, but I truly thank God that we had the opportunity to be a part of Morgan's life and to be involved with her at the moment that the angels called her into the Light.

Thank YOU all for the prayers, support, energies, medical knowledges, spiritual help....for everything! She managed to touch sooo many people in her short time and in reverse, so many kindnesses have touched us.

This probably will not be my last update...but I do feel a need to post information about her services. The dates are set, but there is a bit of ambiguity regarding the two services.

Tuesday, I would like it to be a smaller service...for family (both physical and our DHMC family) as well as close friends. Morgan, being the social being she was, made some very important and strong connections. You know who you are. If you are one of these (or has a strong tie to Ryan, Karl or myself)....then, please include yourself as a close friend. Your heart will know.

If you are on the fence, listen to your heart a bit more...if it wasn't meant for you to attend, yet you want to be a part of things, one can help on the side lines or be part of the bigger service on February 5, 2007, 6pm...the day of Morgan's birth.

Knowing Morgan, please remember that there is not right or wrong when you follow you heart.

The following is her obituary. She will be cremated, so there will be no graveside service. Some of the smaller details are yet to be worked out, but here you are:

Morgan E. Betz

Peterborough, New Hampshire – Morgan Elizabeth Betz, 7, surrendered into the Light, with her angels beside her, on January 11, 2007. She passed on, at home, surrounded by her parents and a good friend. She is now free of her valiant struggle with cancer that began three years ago.

Morgan was born in Peterborough on February 5, 1999, the daughter of Lisa (Koziell) and Karl F. Betz. She was a second-grader at Peterborough Elementary School and enjoyed socializing, swimming, arts and crafts, and dance. She was very strong willed, yet her love and light filled any room that she entered. She was a wise old soul, in a young body, that managed to live her short life to it’s fullest, touching the lives of everyone she knew. She brought many gifts for us to receive, and many of us who knew her are so very grateful to have been a part of her life.

In addition to her parents, she is survived by her brother Ryan; her maternal grandparents, Sue and John Koziell of Hancock, New Hampshire; her paternal grandmother, Constance Betz of Monroe, Connecticut; including many aunts, uncles, and cousins. Her pup, Isabella, remained ever faithful to the end.

There are no calling hours. A smaller service for family and close friends of the immediate family will be held on Tuesday, January 16, 2007, at 11 AM, at All Saints Church, 51 Concord Street, Peterborough, New Hampshire. Later, a community celebration of her life will be held on the day of her birth, Monday, February 5 at 6 PM, at the Peterborough Town House. Reverend Adrian Robbins-Cole, Pastor, will officiate at both.

Memorial gifts in her name may be made to the Make-A-Wish Foundation of New Hampshire, 66 Hanover Street, Suite 101, Manchester, NH 03101; to David’s House, PO Box 660, Lebanon, NH 03766; or to the Lunch for Life Program, Children's Neuroblastoma Cancer Foundation, PO Box 6635, Bloomingdale, IL 60108.

Jellison Funeral Home and Cremation Services is assisting the family with arrangements.

Thank you all again,
Take care and God Bless,
~Lisa

Mood:  happy
Hi,

It is 2:20 in the am....I am full of wine, so please excuse any mis types and words that don't make sense.

The emoticon is "Happy" for Morgan is now in a place that has no pain and her spirit is free...in a place of immense love and light. She passed into the light at 11:50pm on 1-11-07....3 years exactly...from when she first had her intense leg pains - thus beginning my conscious quest to figure out what could make her feel so miserable.

They put her on another med in the early evening yesterday...Verisade (sp?) to deal with anxiety. After several pumps of this and the fentanyl, she finally relaxed. I read her a book Izzy's breeder (Kim) brought..."For Every Dog an Angel". Suzanne (Morgan's pediatrician) Karl and I then talked about what Morgan's heaven would be like....tons of table space with arts and crafts supplies, going outside to swim with the dolphins and if she wanted to be thrown into the air....an orca whale would also be there... We wondered how long her hair would be and all the scrunchies, hair bands and barrets she would have....the food that she would be able to eat without gaining weight, the back bends that she could do w/o pain, the friends she would make. What it would be like going over the angel bridge and give Ryan and Liam grief when they start dating....giving Dad grief when he isn't thinking straight....telling Dr. Suzanne when something isn't done medically correct...

Then, she got herself up and opened her eyes. I was sitting with her (in her hospital bed) and told her that if she saw the angels, she should go...go and be free from the pain. She took one last breath...and let go...following the angels.

Watch out everyone in heaven...for a spit fire has now joined your ranks.

Later, Suzanne, Karl, Sarah and I then had a glass of wine..toasting Morgan life and all the gifts she has bestowed upon us.

I will update later as to arrangements when I know more.

God Bless you Morgan...you are, and will remain, a shining star in our lives. You and I will forever be connected...forever. I love you so.

Take care and God Bless,
~Lisa

The following is from Karl: (3:03 am)

Dearest Miss Morgan:

It is early this Friday morning and words alone cannot express how grateful I am to have been your DAD! I tried writing a post on December 21st, approximately 3 weeks ago when the doctors indicated that you only had a few days or so to live - I guess you showed them who was the BOSS! and lasted through an additional 3 weeks. My e-mail posting at that time indicated that I hoped you would be able to ride on Pegasus, the Greek horse, as your Uncle Todd, known also as I-Tod had written you a letter and drawn you a picture of a horse. I said at that time, "Morgan Your Chariot Awaits!" - Please feel free to enjoy the Ride! - I also said that I would miss you very deeply and that the folks that had passed on at that time were the lucky ones (as they would shortly be rejoicing and be able to enjoy everything that only Morgan has to offer) - Morgan, although you lived on this Earth for such a short period of time, you have lived a most enriching life and a life that some people are not able to achieve until they are 10 times or more your age.

As I lay on your air mattress tonight - after your passing, Tears of Joy came to my Eyes for only the Second time since you were diagnosed with your disease some 3 years ago. I realized how lucky I was to have been your father, mentor, teacher, friend and playmate. I enjoyed our time immensely over the past month and will never forget such fond memories that I have of you and of our family. You had such a PIZAZZ and KIND SPIRIT about you that you have taught myself and many others about what is really important in LIFE. The 1st and utmost important thing that you taught me is that FAMILY is the #1 priority in LIFE as we know it. The 2nd and just as important lesson is that we should not take things for granted and we need to live and enjoy life to the fullest each day with no regrets as if it is our last day here on Earth. (Stop and smell the roses, listen to the birds chirping in the morning, enjoying all that God has to offer). The third great lesson that you taught me is that it is much better to give than to receive. Although your philosophy that MORE is BETTER works in so many ways, unfortunately it didn't do as well when it came to your cancer.

I truely cherished our walks (me pushing your wheelchair) that we were able to enjoy over the past 2 weeks. Although many people have wished for snow, you certainly had a pact with the BIG GUY upstairs when it came to weather. I know that I have not in all my years seen such BALMY weather for late December and early January that you must have ordered up which allowed us to go on so many nice walks in the wheelchair.

We have been befriended by many people from Crotched Mountain daycare to people at PES to people at All Saints Parish to David's House to CHAD 5th floor and 3rd floor to The Make-A-Wish Foundation to the nurtures of Morgan (her nurses, child life specialists, technicians, doctors and teachers) to Childrens Hospital to Dana Farber to people living in Peterborough and from people from afar, people knowing Izzy, our sisters, brothers, parents, cousins, relatives, friends and the list goes on and on. Anyone who ever came in contact with Miss Morgan knows that the experience that a chance meeting may have has left quite an impact! Our family certainly appreciates all that has been done for us over the last 3 years - (All the great homemade meals, a place to stay for one of us, especially our son Ryan, the cleaning of our house, the plowing of our driveway, the mowing of our lawn, the taking of trash to the dump, the beautiful pictures on Morgan's walls of dolphins and a mermaid, the setting up of a GIGANTIC swing-set, the help in setting pillars for a garden. We were very fortunate that Morgan was able to have her wish come true in 2005 by going to Florida to swim and ride with the Dolphins at Discovery Cove. Morgan's health was great and she fully enjoyed as did the rest of us her day at Discovery Cove. YOU HAVE ALL BEEN TRUELY TERRIFIC and we THANK YOU IMMENSELY.

Her second home was Dartmouth Hitchcock Medical Center in Dartmouth where she felt right at home giving orders to everyone as only Morgan could. If it were at all possible, Morgan could have graduated with a nursing degree after all she had been through. She knew way too much for her age which always kept people hopping in a good way to serve her needs. Her compassion for people was always first rate and she always cared more for other peoples feelings right to the end then she did her own. She was truely a joy to have and a great role model for anyone dealing with sickness. There are far too many stories to recount, but one of the funniest was when we made a Cheeseburger with Lettuce, Ketchup and Pickle and French Fries out of playdough and one of the doctors took a large bite.

I could probably ramble on for days, but I have at least said enough for now.

I will leave you with 2 additional thoughts, one of which came from my cousin (He indicated that he could not wait to get to eternity and that HEAVEN would be a better place than here on EARTH. At first this thought was rather new and only stayed with me on a very low level. After experiencing our daughters passing tonight, I have learned that DEATH is not to be feared and that it is just a journey in all of our lives. I had been fearful of DEATH since I was about 10 years old and would wake up at night in a cold sweat. Morgan, if there was 1 more thing that you have taught DADDY, is that DEATH should not be feared and when it comes to ETERNITY, I and we are just a short ways away from joining you in the BESTEST AND MOST BRIGHTEST PARTY OF THEM ALL!

My cousin also indicated to me at our Aunt's funeral last week that Morgan and Lisa have been an inspiration to him. It was not until I heard him say that last week that I realize that I am truely blessed with having the most wonderful wife in the world. I did not realize until tonight how special you really are. You have always been the most giving and sharing person that I have ever met and have taught me to be as well. Our children have been raised with a good set of values and are very respectful and caring and alot of that is owed to you. You have had to endure a lot (understatement) over the past 3 years and I am sorry that I have not always been on board with Morgan's journey, maybe fear of DEATH and other things got in the way early on in her diagnosis. What we did for Morgan who as tough as nails finally asked for help 3+ hours before her passing is truely remarkable and special. If there was a way to pass from this EARTH besides being in pain, I would want the same for myself when my time comes. I love my family very much and feel very fortunate to have been a part of Morgan's life for almost 8 years.

I am signing off now at 3:50 am and hope this posting finds you well.


I am hopeful that Lisa will take all the journals and writing and compile them into a meaningful book for those dealing with cancer.

Love Karl

Mood:  hug me

Hi All,

It is now Thursday AM and she is still hanging in there. At this point, she is definitely more out than in...but her spunk comes through every now and again, completely blowing me away. I wonder what she is holding out for??? Considering the meds, and her physical condition....she is amazing everyone.

We had a bit of a bloody nose last night and thank God there was a doctor in the house. After some silver nitrate and some gauze for packing, it has stopped. She is eating less, sleeping a lot, but I have learned that I cannot assume that she is sleeping for she will repond if it is important enough to her.

Her spunk showed through, in a big way, yesterday afternoon. My sister, River, and I decided to get Isabella groomed....I took her in. When the call came that Izzy was ready, I was set to run off quickly and get her before Morgan woke up. I really thought Morgan was asleep.

Well, she heard me tell everyone that Izzy was beautiful and ready to come home. She woke right up and demanded that she go with me to get her pup. I tried to argue. Her nurse was coming, it was cold out, a few friends were over for lunch, her nose was leaky,and her tummy hurt...but that didn't matter. S She was bent on going - it was breaking my heart. Needless-to-say, Morgan won out. She took charge and ordered that Dad get her boots (only 1 though for her other foot hurt), hat and mittens. She wanted a blanket for her lap. Off we went. She got mad at Karl for adjusting the seat to a more upright position for leaning back was perfect...this way she could snooze during the 10 to 15 minute ride. Forever in charge when she wants to accomplish something!

She was sooo psyched to see Izzy!! I put Izzy near her and she laid down, with her nose on Morgan's lap, and Morgan petted her all the way home. They even put pink bows on Izzy's ears. Amazing, amazing, amazing....I don't know another word to describe it.

Periodically, Morgan mentions her angels are all around her. A week or so ago, it was 2 angels...now it is many more. Although this brings about a lot of sadness for she is getting closer...I am relieved and, even joyful, that she is indeed in the company of angels!

That's it for now. Thanks for checking in. I'll update later,

Take care and God Bless,
~Lisa

Mood:  surprised

Hi All,

How was your weekend?? Ours was a decent one. We got to celebrate Ryan's Birthday with tacos and enchiladas for dinner and a wonderful soccer ball cake. Morgan was tired after eating 1 taco so we put her to bed in the addition room. As we were singing "Happy Birthday" to Ryan, we heard a small voice...it was Morgan joining in! I tell ya', even when we think she is fast asleep, she doesn't miss much!!

Morgan's pain started increasing again, so we have upped her pain meds another 4 times since my last update. Despite the meds being enough to level a horse....Morgan is sleepy, yes, but she manages to wake up and interact when we have new visitors or she needs to accomplish something. I don't know how she does it - I truly don't. Then again, this is how Morgan is. Since the day she was born, she never wanted to miss anything and she was very open in expressing her opinion.

Her body's condition that has brought about the increase in meds has brought about other interventions to address other problems. Yesterday, they started her on oxygen. She fights it when she can, so her air cannula (tube) comes off when she's awake, on when she's asleep. Big breath...the reason why...

With so much tumor in her little body, it looks like the tumor near (on?) her heart is causing the most visible symptoms right now. Her heart seems to be working very hard, but her blood pressure and circulation is not reflecting that. Donna (her hospice nurse), says that there was a big change in Morgan's physical presentation from Friday to Monday...so Morgan's Time could be soon. Now, I hesitate to write that because "soon" has been going on for several weeks now. But looking at her.....I dunno, it could very well be soon.... Donna said though, that having her heart give out is probably the best way to go, considering all the other ways this damn cancer can present the end. This is just so unfair....

Morgan is doing everything she can to get things in order. It is like she is "nesting". She has several things to knock off of it before she'll relax. There are several people that are on that list also. If the spirit moves you to visit or call....please do....chances are, Morgan wants to see you too. She, like always, knows what she wants..and she'll let me know if it is too much. While this isn't an open invitation for everyone to visit/call, if you feel strongly about it..chances are, there is a reason - and that is OK.

Well, so much for a short update. I am still on auto pilot, doing what I need to do. Karl and Ryan seem to be OK with it all..so far. Will update in a day or two.

Thanks for checking in, the support, prayers, and positive energies.

Take care and God Bless,
~Lisa

Mood:  not sure

Hi,

First and Foremost, I want to wish Ryan a very Happy 11th Birthday!! Even though today is the "official" day, we are going to celebrate it tomorrow evening. Thanks to my Mom for baking cupcakes for his class....we were very busy yesterday so that was a huge help. I cannot believe how time flies! Morgan heard that he wanted a massage, and, given that today is his actual birthday, she wouldn't wait until tomorrow to give him his certificate for one. He was so psyched!

I was going to update yesterday, but yesterday evening found us at the local hospital for a transfusion. Her red cell count was incredibly low. This was the first transfusion locally. After a few glitches were worked out, it went well. A friend brought in some dinner and a "beverage". We sat around and talked for the duration of the transfusion....with Morgan putting in her two cents worth every so often. Thanks Donna W! Morgan's pediatrician also joined us...we had a little "party." We ended up getting back home late last night. Karl was down in MA, overnight, for his aunt's funeral.

What a couple of days. Morgan is still holding her own, even though she is very tired. They have seriously "upped" her pain meds again (and again and again) since my last update, but I think she is now comfortable. Despite the meds, she is still going outside every day, having friends visit...she even painted some pottery this afternoon. Her latest and greatest is that when she wakes up she is famished and wants food NOW or she wants to stretch her legs and walks around the house NOW. Who am I to argue??

Yesterday was crazy due to the meds and the transfusion...but it was also a hard one because Ryan and I had THE TALK. Ryan knew that Morgan is very sick...he knew that she may die.....but this talk was about taking out the "may" and "probably". I always tried to leave a decent opening for a miracle, and this may be how I kept some of my strength that folks seem to see. But...I also talk and live the "here and now".....and given that, was it fair to be telling Ryan that she would "probably" die or "may" not get any better? Probably not. In our talk, I did leave that door open a crack for there always can be a miracle, but he needed to know the eventuality of it all so that he could make peace with himself and between the two of them. Huge Breath!

Ryan took THE TALK pretty well. He was being quite the optimist versus the realist, so I'm glad we talked. He asked a lot of good questions & expressed his opinions of heaven and the spirit, just to name a few. He seems pretty grounded in the belief that we never lose contact with the spirit...for a piece of it always lives within us. This afternoon, as we were washing Izzy B., he started talking, out of the blue, that he will miss Morgan when her time comes...but he knows that "she will be in a pain free place full of love...and that would be good for Morgan". Another huge breath. He is such a good duck...I am so very blessed to have these two as my children! And who says that only adults can be our teachers??!?

Does this update mean that things are eminent? Morgan's hospice nurse doesn't think so because she is still eating, walking, playing etc....but one never knows. I guess we just take things as they come, and treasure what we can.

Well, hope you all have a great weekend....we are certainly going to try to!

Take care and God Bless,
~Lisa

P.S. Kim, I just got your most recent email, if you sent others, I'm sorry - but we didn't get them. As far as Izzy's behavior, she is with Morgan 24/7 - keeping a watchful eye out on her. Any/all of Izzy's vocal expressions of irritation is directed only towards our husky. I swear she knows that the husky annoys Morgan and Izzy wants to make sure the husky doesn't bug her more than she has too! She still remains a social, loving cuddle bug to other people :)

Mood:  spacey

Hi,

Today seemed like things resumed some 'semblance of normal for a weekday...Ryan went back to school, winter soccer games are being scheduled, holiday decorations are slowly being taken down, Karl went back to work and Morgan slept in. This is where the normalcy ends....for she and I hung out at home all day. Yesterday, she was a hurting unit so her nurse made a late evening house call and we "upped" her pain meds yet again (by another 33%). She soooo needed the extra pain relief....Thanks Donna!!

I find it absolutely incredible that she can interact as well as she does considering the magnitude of the meds and the extent of the cancer. Today, however, was a little different. I think the increase in meds (this time anyway) caused her to be groggy all day. We did have visitors, but she was in and out. Some of this grogginess may also be due to a very low red cell count. I must tell you though, that every time she got a spurt of energy...she wanted to walk or eat. If anyone has any question of the power of one's will and spirit....have them look Morgan up! I see it each and every day. One will leave a true believer in things greater than science.

Every now and again, I have mentioned her pup, Izzy. She is a total love...but now I can add another word to describe her....watch dog. Izzy is with Morgan 24/7, right by her side. If anyone is pestering Morgan, Izzy expresses her dismay through body actions and her own bark/whine/growl. Many of us humans have lost our 6th sense that most animals have and that scares me a bit because it makes me wonder if Izzy knows of something more eminent than I do. To put a positive spin on it though, I know that someone who loves Morgan is with her every second - even when we need to step out of the room.

We'll see what the next couple of days bring. She has a couple visitors scheduled and possibly a road trip to visit a friend's new arts and crafts room tomorrow. Car? Road? Bumps? If this trip does come to be, she will persevere because the spirit seems to be in control right now.

Thanks for checking in, the prayers and all your positive energies.

Take care and God Bless,
~Lisa

OH....a couple folks have asked how our friend Caroline is doing. To the best of my knowledge (I haven't talked to mom since before Christmas) they are doing well. Everyone was home for Christmas. They went ahead with chemo despite the new tumor before the holidays. All tests showed that the chemo was indeed working with the exception of this one new growth. I believe that they are heading to CHOPs sometime this month to try a new treatment that involves MIBG (a neuroblastoma specific radioactive agent) and radiation. Good luck....I'll be saying my prayers for a good response to the new treatment :) !

Mood:  a-ok

Hi folks...

How is everyone surviving the holidays?? I'm finding that there seems to be a wonderful gift around every corner this Christmas season...a lot that bring about happiness and a few that still keep me on my toes.

Morgan is hanging in there. Actually, she is doing much more than that. Despite a possible transfusion and changing her medication distribution to a pump instead of patches yesterday (and, yes, they increased her pain meds by another 50%), she is doing amazing well. At points, I forget the amount of cancer she has raging through her body because she is eating like a horse, walking around with help, dictating the way things should be done...just to name a few. It is an extraordinary thing to witness.

Yesterday, we had Karl's sister and family visit. She was tired, but managed to participate. In fact, she went outside last night, for the first time since December 11th, to roast marshmallows and make s'mores around the fire in our backyard. She was sooo elated to finally get out!

This morning she went venturing outside again, in her wheelchair, in the snow. She was so happy! Around noon, our pastor came to the house amidst a change of visitors. Right now, Morgan is sleeping on Theresa's lap...in the middle of a game of Scat...after a wonderful dinner of steamers, lobster, stuffed mushrooms and kielbasa (and, a fair amount of wine for us adults). She was looking forward to a seafood dinner for such a long time now. The Terri's came with all the fixings to satisfy everyone's taste buds and help us welcome in a New Year!

I really do treasure these moments. I am completely awed and amazed that her spirit is being so strong despite her weakening body. She just keeps going...and going...and going. While it is wonderful seeing her in little pain, my sadness kicks in when I get a reality check and realize how much we are all going to lose when her body just can't hang on anymore. Yes, her spirit will always be with us...but still...several moments during these past few days have seemed so surreal. I think she has surpassed expectations as far as how long she could endure all this. While this is a miraculous thing, it really shouldn't surprise me....knowing Morgan the way I do.

Tonight, it is Morgan's goal to welcome in the New Year at midnight. It makes me wonder what else she has to "do" before she feels her work is done. The "living in the here and now" is the philosophy for moment...we'll she what other lessons she has to teach us. Knowing Morgan, I'm sure it will be profound.

In the middle of everything this weekend, a friend sent me an email regarding the Lunch for Life program that raises money for Neuroblastoma research. I totally forgot about it. Totally and completely. It is so touching, in looking up Morgan's name on the web site, and actually SEE the support she/we have from so many people via the ornaments on the Christmas tree! While I have always felt your support through actions and prayers, it is quite another thing to actually see the tree pop out at you with all of your names under it. Thank you!!

Well, thanks for checking in, your support and the prayers. I wish you all a Happy and Peaceful New Year!!
God Bless,
Lisa

Mood:  chillin'

Hi All,

As I type this, Morgan is with 2 friends....playing Parcheesi, finishing dinner and trying to figure out how to get the Light Bright to work. Even Ryan joined in the fun!

Things here are puttering along. We are getting into a routine with meds, naps, visits etc while Ryan is busy with old friends. Even Karl went back to work on Wednesday. Back to Morgan...we did have to increase her pain meds Tuesday evening (by 33%), and she has been pretty good ever since. I think Morgan is pulling her typical "Morgan moves" that if it doesn't hurt too much, "I don't need the extra Fentanyl". This is getting her into a bit of trouble by not keeping on top of the pain, but I am learning too. I've become more persistent in having Morgan take her Fentanyl lollipop whenever she looks like she MIGHT be in any pain. We'll see what tonight brings. We may need to up her dose again tonight or tomorrow.

The social visits have been wonderful when she is feeling up to it. Tuesday was tough...Wednesday and today have been pretty good. She soooo enjoys playing with friends (even though she doesn't get up off the couch)! It is like she masks over anything negative that she feels in order to be 100% there as far as play and talking. I'm getting better at reading her in this regard also. The other day, we laid low. It is such a fine line....rest...indulging the spirit...nap...play. As I say to folks now, we are totally winging it and go in whatever direction the spirit moves us in! While this may seem like a cop out, it is amazing how everything has been falling into place. There has got to be some higher, cosmic orchestration of events for it feels like whatever transpires is the way it should be. This flow is keeping me relatively sane.

The medical world is still very involved in monitoring what is going on. Her Dr. up at DH is involved as well as her pediatrician here. The visiting nurse has been coming, but as we need it. Definitely 2x/week...but more if we need it....any day, any time. This set up is very nice!

That is the scoop for now. She finally got through all her presents this afternoon. Thank you all! Many, many of the presents, cards and visits have brought about a huge smile. I cannot even express how this warms my heart!

I'll update in another couple of days, barring any significant changes. Happy New Year everyone!
God Bless,
~Lisa