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

Mood:  celebratory

Merry Christmas!!

While Morgan vegges on the couch watching "ELF" and the guys are downstairs challenging each other on a new Play Station 3 game...I thought I would take a few minutes and type a quick update (so much for quick..I am proofing this hours later!).

Leave it to Santa to remember that he was late last year....so he came early (a couple days ago) and left his loot for "good little girls and boys". Morgan was very dismayed, at first, because "it just isn't right" that he came early. Ryan however, convinced Morgan that the lateness and earliness of this and last year evens everything out. Morgan's response was that it was OK, maybe, as long as we didn't open the other presents until the 25th - the REAL Christmas!! Despite how she is feeling, she continues to keep us straight as far as how things should go!

Santa was good to both kids. Morgan got her American Doll Bed and Ryan got a true-blue backpack. The presents of today were well received also (even though they are not all open yet). In between, we have been really low key with friends and family stopping by. Morgan really wanted to go to my folks house for Christmas Eve, but we hung out here since she was exhausted. She is soooo very happy to be home. This happiness, in itself, is a wonderful gift for me!

It is hard, sometimes, to realize how sick Morgan is because the pain meds are doing what they need to do. Other times, we certainly know where she is at. I feel as though we are walking a tight rope....there seems to be a fine balance between meds, rest, food, indulging the spirit, etc. So far, things have been OK....we are still walking on it....albeit precariously so. I am very grateful that Morgan got her wish of having the family together for Christmas. This is what she truly wanted above all.

Last night, when I was putting her to bed - she said that she couldn't go to bed yet because there was one more thing she wanted to do. My favorite part of Christmas is Christmas Eve, sitting in front of the tree, taking in all the quietness, peacefulness and enjoying the meaning/wonderment of the season. She wanted the two of us to do the same last night. This was another amazing gift. Just watching her, snuggling with her...brought about a huge amount of Joy...for both of us.

The kindnesses, gifts and thoughtfulness of so many people, during this Christmas season, has been very uplifting. Thank you to each and every one of you - it has made all the difference in keeping us sane. Another amazing gift was a short story my sister, River, wrote for us. River got the opportunity to read it to Morgan yesterday afternoon. After letting it sink in a little...Morgan said that she really enjoyed it. Right now however, Morgan wants to keep it to herself. I'm pretty sure it will be shared with others soon.

Sooo, tomorrow is Tuesday...when all the Drs and nurses resume their normal schedule. And, why is this relevant?? 3 days ago, I was afraid that the holidays would be wrecked without constant, "degreed" medical support for Morgan. Tuesday felt so very far away. But here we are on the other side, for the time being, living and enjoying yet another miracle of celebration.

Thanks for checking in and Happy Holidays.
Take care and God Bless,
~Lisa

Mood:  happy
Good evening,

We are HOME!!! I tell ya', this was a LONG haul! The Drs. up North asked me if I was ready for this...I told them "no" but we would go for it anyway. And what a wonderful, wonderful surprise we got when we got home. I don't have names...but a whole bunch of "elves" cleaned (and I mean really cleaned) and organized the house. What a sense of peace and tranquility the house has....clean, decorated, food in the 'frig etc. I almost fell over when I went to get a towel in the bathroom and even the closet was organized!! I do not know who you all are but THANKS...this was the one of the best homecomings..to have this chance to be home, in a place of CALM!

Morgan enjoyed the ambulance ride, but slept through most of it. The living room is all decorated and her hospital bed is there, along with the tree and cards from friends and family. We'll see what the next couple of days bring...but for right now....she is looking better than she has in weeks. She is so relieved to be home. I get to play nurse and be the distributor of the meds...but I think that now that we are here, it truly is the best thing. My opinion may change as the demand become more intense....but for now, I feel very blessed that we all got this opportunity.

Thanks for all your prayers, positive energies, and support. People tell me that we are being very strong. Well, I cannot agree with this opinion for I truly believe that without all of you, and your contributions and kindnesses towards us, as well as Morgan.....I don't think we'd be able to carry all this like we have. Thank you all, from the bottom of my heart. You are all very special - angels that have helped us be where we are today.

Well, I hope you have a good night. Safe travel for the travelers and hope you all have a wonderful holiday. I'll try to update in a couple days!

Take care and God Bless,
~Lisa

Mood:  d'oh

Hi everyone,

I am typing this from rm 546 here at DHMC. We got moved up a couple nights ago...literally, in the middle of the night. Over the past couple of days, we have had a nice stream of visitors. Morgan was in a decent spot to interact and enjoy the visits. Even Izzy B., (her dog) was smuggled in a couple of times. We have a nice room, but I BELIEVE that we will be checking her out tomorrow and head home.

She's is soooooo psyched to be going home in an ambulance...I'm on auto pilot, doing what I need to do. The electrolyte situation seems to be under control with the help of meds. It actually has a name....SIADH....syndrome of inconsistent anti-diaretic hormone (I think). Because of this, she is unable to receive any more chemo.

We thought she might need more radiation to her arms and she had a CT scan last night to verify or nullify that thought. She is not going to get more radiation....but in the process, it did verify that her internal organs are very compromised.

Why type this update, given the news?? It is therapeutic, for me, I guess. I have tried very hard to live in the "here and now", but it is becoming very hard not to let my brain wander. Right now, she is sitting with Karl - in bed - eating pizza. So normal, yet so very abnormal....for the calmness can change in the blink of an eye.

I am incredibly scared to be responsible for her at home...but that is what she really wants. I will somehow, someway, find the strength to do this...for her. We will have increased nursing care at home and that will be a God send.

Ryan seems to be doing OK with all this (so far) and Karl is doing what he feels he needs to do. I cannot fault any action, at this point, because everyone deals with things differently.

I'll let you all know if we truly do get home. We are going to lay low and try to enjoy what gifts there are to receive....after all, "tis the season" of love, giving, peace, compassion, and of life and re-birth.

Thanks for checking in...I'm off to get a cup of wine (yes...that too...in the hospital). Please, if you could, please send up a prayer or two that Morgan is able to make this transition as pain-free and peaceful as possible.

Take care and God Bless,
~Lisa

Mood:  incredulous

Good evening,

Very quickly here I want to let you all know that we have certainly seen the power of prayer today. For that, I thank you ALL!!

Compared to yesterday....Morgan has done a 180...she was chipper, alert, dictating to others what to do and not do, eating etc. Absolutely amazing. The electrolyte situation is getting better, not there yet though. We also need to get a better handle on the pain. We think we have it somewhat under control, and then she starts complaining again.

They were going to move her up to the 5th floor today but they had 14 admissions up there and, like I said earlier, they still need to work on the electrolytes.

Her Dr came in this am and Morgan wanted the Dr to pinky swear that she would be home for Christmas. The Dr said that she couldn't "pinky swear" to going home BUT she did "pinky swear" that she would try her best to get her home. That's Morgan for ya'!!

Sooo, that is the long and short of it! Hopefully, she can stay like this without radically changing again!!

Thank you all again...I'll update in a couple days, barring any significant changes.

Take care and God Bless,
~Lisa

Mood:  sad

Hi everyone,

Everything changes, and it seems to be changing CONSTANTLY! When you read the following, remember that everything does indeed seem to be doing just that, back and forth and up and down......nothing seems to be what it really is.

I am writing tonight's update from room 7 here at DHMC's PICU (pediatric intensive care unit). It has been a very long, hectic day....but all seems to be calm right now. Morgan is sleeping. She woke up early this AM with a very different demeanor. By 10 am or so, she had a small seizure. After another brain MRI and blood work, it was determined that some of her electrolytes were WAY low and it was becoming too complicated to treat on the main floor. The MRI? It showed nothing within the brain itself...but more neuroblastoma had developed on the inside of the skull...possibly putting pressure on some nerves. It was highly recommended that we bring her down to the PICU to see if they could bring up the electrolyte levels safely w/o doing further damage.

We are walking a very fine line right now. This all seems very surreal. Karl, in his attempt to do something, called family and everyone came up. The Dr. says that it could be dicey because her system is fragile while, in the same breath, said that she might possibly be able to go up to the main floor in a day or 2. Me? I am totally focused on Morgan in the "here and now".
.
We'll see how it goes. As fate would have it...Karl and Ryan were staying at David's House anyway, so they were able to be here all day. Right now, Karl and I are staying in Morgan's room while Ryan and his grandmother stay at David's House. Ryan even got his own circle of support when a couple of his friends arrived. What a wonderful gift!

Hopefully, it will be a good night. Thanks for the prayers and support everyone.

Take care and God Bless,
~Lisa