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HOW'S MORGAN DOING?
Thursday, 28 December 2006

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

Posted by super2/missmorgan at 8:32 PM EST
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Monday, 25 December 2006

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

Posted by super2/missmorgan at 9:39 PM EST
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Friday, 22 December 2006

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

Posted by super2/missmorgan at 9:36 PM EST
Updated: Tuesday, 2 January 2007 9:21 PM EST
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Thursday, 21 December 2006

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




Posted by super2/missmorgan at 9:46 PM EST
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Monday, 18 December 2006

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

Posted by super2/missmorgan at 10:55 PM EST
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Sunday, 17 December 2006

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

Posted by super2/missmorgan at 10:56 PM EST
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Thursday, 14 December 2006

Mood:  irritated

Hi All,

Whenever we are at the hospital, it feels like we are in a time warp.....I cannot believe it is only Thursday....considering everything that has happened since Sunday.

Yes...we are still here at DHMC. We will probably be here through the weekend into next week. I don't know where to begin or end...so please excuse my ramblings. Since Sunday, Morgan seemed to be getting a bit better. Less pain, more mobility etc. This morning, she was up at 2 AM (yes, AM) talking and wandering with the nurses, doing nails, eating pizza etc. She finally got back to bed around 6 am. I thought we were on the mend - only for her to crash and burn as the day progressed.

They did a bone scan yesterday and it confirmed some of my worst fears. The neuroblastoma has grown and invaded many parts of her tiny body. As you knew..the tail bone was being radiated, we have 4 more treatments to go. Today, they did a "one time" high dose radiation treatment to the top of both of her arms. She will also be getting radiation to her eye orbits and nasal bones (this will happen over many days). She'll start another chemo regimen tomorrow night.....getting Cisplatin 1x/week. Outpatient, every week. This should keep things at bay without crashing her blood counts.

So, needless to say, it is becoming increasing difficult to figure out what the next day will bring. The cosmos seem to be guiding and carrying us right now. Many folks have offered to help...but I honestly and truly do not know what to say but thank you for the offers. I am going from one event to another without much thought in between.

Thanks for the visits. Some how, some way, they have been wonderfully spaced and not overwhelming. While I was wicked nervous about going into the bone scan with Morgan (without family or friends), Jill called that morning and was able to go with us for the scan. Thanks so much Jill - you were truly a God Send!!!

I see the workings of God and the cosmos constantly....so I HAVE TO BELIEVE that everything will be OK....not the way I want it to turn out....but, somehow, we are being guided and will be held throughout this ordeal.

Thanks for your prayers everyone...that is what we truly need.
God Bless,
~Lisa

Posted by super2/missmorgan at 10:18 PM EST
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Monday, 11 December 2006

Mood:  spacey

Hi All,

A quick update and then I am going to try to catch up on some sleep.

Morgan had a better day....she was completely and totally zonked for the greater part of the day, but the pain is a lot less. This is a major blessing. The meds versus itchy dilemma hasn't been totally figured out yet, but it is getting there. She also got her 2nd day of radiation in. We are hoping the effects of it will be seen soon. The catheter thingy did not go well at all last night...but it did provide a huge amount of relief. She has a substantial amount of meds in her (pain meds, itchy meds, tummy meds and steroids) and it will probably take a bit to get everything regulated so her body can deal with it.

A huge step for Morgan occurred today. In the midst of everything, I believe that all of the exposures she has had in the past 2 weeks ++ on her "spiritual quest" definitely helped. It seems as though it brought about some sort of inner peace....a relief....a calmness...for Morgan. Our asst. pastor offered to come up today and Morgan was psyched to have her come. Before this, she would have said NO WAY!! This is another huge blessing.

That is about it, for now anyway. I know there will be more testing, I just don't know when.

Thanks for checking in and the prayers..I believe that they are again carrying us right now. I don't promise another update tomorrow...I did today because yesterday seemed so sudden. I feel that we are pointed in the right direction and no update probably means that all as well as can be expected right now.

Take care and God Bless,
~Lisa

Posted by super2/missmorgan at 7:52 PM EST
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Sunday, 10 December 2006

Mood:  blue
Hi,

Time for another update. I was going to do it a couple days ago, but Morgan was feeling pretty rotten and I didn't know where it would lead us.

Well, it lead us right into room 541 here at DHMC! We drove up this morning. Morgan has been in a lot of pain and we needed more powerful pain meds for her. She has had a MRI already and we think we have found the culprit causing the pain in her bum and legs, causing bladder issues, numbness and tingling in her feet, and upset belly.

Her spine is NOT compressed (Yeah!!) but another lesion was found around her sacrum (tailbone). The perimeters are a bit fuzzy, but there is something definitely there. Small, but there. Dr. Chaffee somehow worked her magic and Morgan will be getting her first radiation treatment, along with some steroids, tonight to try to shrink it (pretty darn impressive considering this has all occurred on a Sunday). It is great that they caught it...but not-so-great that it grew despite the chemo. This growth happened in a matter of 1 month. The fuzziness was not there on last month's MRI.

We now have an action plan. Radiation (her first round was just completed), steroids, pain med management and she'll have to get a catheter for her bladder. I am sooooo not looking forward to the time she truly realizes that there is another tube. Her bladder is very, very, full because they think the tumor is putting pressure on the nerves that would empty the bladder. She will feel so much better, belly and tummy wise, that I hope she can overlook the tube and realize how much better she feels. Yeah, right!

There will be more to do in the next couple of days like moderate her pain with meds that don't make her itch. Right now, she is on a morphine pump....but morphine sends her into orbit with the "itchies". Tomorrow, she will probably have a bone scan done. That is about all that I know for now. Karl is staying up here tonight but will go back tomorrow.

Thanks to friends and family that have helped us out with very little notice. I know that Ryan, the animals and things at home are being well taken care of! THANKS so very much....we couldn't be doing this without all of you!

Hope you have a good evening!

Take care and God Bless,
Lisa

Posted by super2/missmorgan at 9:44 PM EST
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Saturday, 2 December 2006

Mood:  a-ok
Hi all,

Hope you all had a nice Thanksgiving! We did. It was very low key- (and very YUMMY) at my parents' house. The next day, I ended up cooking a turkey and had a few friends over for another Thanksgiving...I must say though, that my Mothers' turkey dinner was much tastier. Now I need to start working out!

On the medical front, Morgan continues to do pretty well. She attended school every day this week. We have gotten into the relatively new routine of letting her sleep in and she goes to school whenever she wakes up. Yesterday morning was a record...she woke up at 11:35 am! Needless to say, she only spent a couple hours at school. The only transfusion she received was the Wednesday before Thanksgiving - she needed platelets. Otherwise, she seems to be holding her own. This is a good thing. The next round of chemo? I do not know yet.

Emotionally, Morgan has been on a spiritual quest, of sorts, this week. As I type this I may get philosophical and if you don't want to go there, thanks for checking in, but it is time to log off now.......


We have been struggling to provide Morgan as normal a life as possible - despite the cancer. Every mother wants her child(ren) to be happy and content...with the solid belief that they are safe and well loved. While most of these bases have been covered within the parameters that we have been given...she has had a huge fear of the afterlife, God and her role in "why" she has this cancer etc etc. She has expressed her anger towards God because "if He has a hand in everything...then He must have caused her cancer". Morgan has asked some questions that I truly don't have answers for (and some of her viewpoints I cannot fault her for!).

This was a week where I put my own fears aside in order to try to calm hers. We had a "breakfast date" with the assistant pastor (Sarah) of our parish on Tuesday. Morgan knew that a minister has close ties with God...and since she was mad at God....she had nothing to say to any ministers. Simple. Yet, those of you who know Morgan well, won't be surprised that she ended up talking the whole time. It went really well. Nothing of significant substance came out of it, but a foundation was established...a foundation that can be built upon. She was very comfortable with Sarah. This foundation is for a bridge to help her over some of her fears. The bridge is far from finished - but at least it is being worked on.

I have talked about the workings of the cosmos before...well, it is amazing what you receive when you are open to it!

After the breakfast date was set, Morgan got a card in the mail. The card was from Callie's mom, Shelley (Callie is the 12 year old who passed on from cancer right after Easter of this year - they also live in Peterborough). HUGE BREATH. Even though I could barely read the card myself that night, I read it to Morgan the next morning. It contained a very powerful offering. Shelley was offering to talk to Morgan about Callie's passage to heaven and answer any questions that she may have. She feels Callie's presence all the time and wanted to share some of that experience with Morgan. Another huge breath. Morgan was more than happy to see Shelley and the baby cows (which surprised me)....as long as I didn't go (this didn't surprise me at all). OK then......

Off we went, after school, on Wednesday. Needless to say, I was more than a tad nervous/scared...but if it could relieve her fears and make her feel safe....then it would be well worth it. At first, Morgan asked that I stay. We tried to get the attention of the calves, talked about cows etc before going into her house. Morgan and Shelley went up to Callie's room to show Morgan around and talk. I was downstairs for 15 or so minutes when Morgan came out of Callie's room, leaned over the banister, and asked if I could go home now (without her). Wow. Morgan actually came home in good spirits.

What does this all mean?? It means nothing more than a couple contacts have been made to help address some of her fears, on a spiritual level. Yet, it means EVERYTHING if Morgan is willing to listen and learn....and if it helps her to minimize her fears and replace those fears with an abundance of security and love. I believe the reason that she doesn't want me around when having these types of discussions is that she wants to protect me as well as others she doesn't want hurt. Leave it to her to look out for others! She never ceases to amaze me.....

Needless to say, this week was huge in her emotional/spiritual development. It is far from over...but the first steps have been taken. Where am I with all this?? I am deeply saddened that these discussions are occurring for the reasons that they are....but if it puts her mind at peace, it is sooooo very well worth it. The reality of it all is that "what is...is" and I want Morgan to feel some sort of security in the future....whatever that may be.

Amidst this long rambling of her past week, Morgan's Spirit and Will remains very strong. Today, after a bowling birthday party...she went to do some pottery with a friend with more activities scheduled for tomorrow. Outside of sleeping in, her hair and paleness, she really shows few signs of the war she is waging inside of her. An incredible thing to witness but I think that is about enough for now.

On another note, please add our friend Caroline to your prayers. They just found out that the chemo regimen that she was on (the same one as Morgan with 2 additional days) really isn't working. A tumor has grown, despite the chemo. They will be doing further testing next week to see the extent of the disease. My heart, thoughts and prayers are with you guys.

Take care and God Bless,
~Lisa

Posted by super2/missmorgan at 10:05 PM EST
Updated: Sunday, 3 December 2006 9:34 PM EST
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